tag:blogger.com,1999:blog-91503784738840644152024-03-17T03:57:08.620-04:00Still Sunflowers: My life with endometriosisA twenty-something shares her experience with endometriosis - a painful condition affecting millions of women. Despite its prevalence, few still know about the disease or have answers for its sufferers.Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.comBlogger65125tag:blogger.com,1999:blog-9150378473884064415.post-69106566493373889662017-03-08T12:35:00.001-05:002017-03-08T12:59:10.223-05:00Why Endometriosis Matters on International Women's Day<div class="separator" style="clear: both; text-align: center;">
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If you clicked on this blog post, you probably already know that today is International Women's Day. But you may not be aware that March is Endometriosis Awareness Month.</div>
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I appreciate that the two intersect today. As I've reflected today on feminism and what it means to be a woman in 2017, my feelings about my incurable illness have also come up. To me, endometriosis bisects so many issues that women collectively face - those with and without endometriosis.</div>
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When I found out I had endometriosis in 2014, I didn't quite understand just how many layers of sexism and gender inequality were packed into my delayed diagnosis. I spent 13 years - from age 11 to age 24 - looking for answers to the searing, paralyzing pain that gripped me every single month, and then more frequently as my disease progressed. So when I finally received a label, I was too grateful to be angry or absorb the injustice of my situation.</div>
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For 13 years, I wasn't trusted as the authority on my own body. Doesn't that sound familiar?</div>
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How often do we question whether a woman is "really" in pain? Enough that I'm giving a talk on it next month.</div>
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How often do we argue if a woman was "really" assaulted? Enough that few people believed I faced domestic violence.</div>
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How often do we restrict reproductive health access, as though women can't be trusted to make the best decisions for themselves? Enough that I fear losing coverage for birth control and treatments to manage my endometriosis.</div>
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Even in 2017, much of our society feels a collective ownership over women's bodies. We insult women who wear outfits that are "too revealing." We criticize the single mother or the woman who elected not to be a mother without asking ourselves about the man who was involved. We ask women "Were you drunk?" or "What were you wearing?" or "Are you sure it wasn't a misunderstanding?" when they report a rape. </div>
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We demand so much from women's minds, souls and especially bodies. But when women's health issues come to the forefront - not just endometriosis - our society doesn't seem to have the time, money or resources.</div>
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Endometriosis impacts one in ten women worldwide. There are women who will go their whole lives without knowing they have it because they lack affordable, accessible reproductive health care. And even with the best health care, no woman will ever see their endometriosis cured. Because it's still incurable.</div>
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There is little funding out there for diseases like endometriosis. Once something is labeled a "women's issue," many people in power seem to turn away.</div>
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But if we're so worried about whether a woman is a mother, then why don't we tackle a disease that is a leading cause of infertility?</div>
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If we're so concerned about a woman's ability to nurture and care for others, then why don't we confront a disease that takes away precious hours, days, years from a woman's life, lost to pain and sickness?</div>
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We ask so much of women. And when they ask back, what do we offer in return? </div>
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"Maybe it's all in your head."</div>
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"You should try not thinking about it."</div>
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"Everyone has something. You think <i>your</i> disease is so special?"</div>
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"I think you're making it a bigger deal than it is."</div>
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"Get over it."</div>
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Despite all this, I find some comfort today when thinking about endometriosis. When I was diagnosed in 2014, I had never, ever heard of endometriosis. No one told me about it in health class. I never read about it in the news. It wasn't a word remotely in my vocabulary.</div>
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But in the past three years, I have seen more coverage of this disease than I have in my entire life. And it's because of brave women speaking out about their experiences and other women giving them a platform to share those stories.</div>
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While I'm uncertain if we'll see a cure or even a sophisticated treatment for endometriosis in my lifetime, I'm grateful for the hard work of women who have come before me and those who will follow. I'm eternally thankful that endometriosis is becoming more of a household word and that more young girls will grow up knowing about this illness and understanding its warning signs.</div>
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That's the difference between a delayed diagnosis (an average of 10 years for most women with endometriosis) and years without untreated pain.</div>
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If you're looking for a place to direct your support this International Women's Day, I encourage you to start with <a href="https://www.endowhat.com/school-nurse-initiative/">Endo What's School Nurse Initiative</a>. This campaign will help ensure more young girls receive endometriosis education earlier and will learn to take charge of their health needs.</div>
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But if you can't give right now, I encourage you to keep sharing your stories and keep talking about endometriosis. This cause has already come so far because of people like you.</div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com99tag:blogger.com,1999:blog-9150378473884064415.post-85065613495187055722017-03-02T10:06:00.001-05:002017-03-02T10:06:46.788-05:00My Best-Laid Plans<div class="separator" style="clear: both; text-align: center;">
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My entire life, I have always been a planner. In college, I'd have brief anxiety attacks if I couldn't find my day planner. I wrote out everything I needed to do, to the hour. I'd lose my mind if my friends couldn't tell me the exact time we were hanging out that night or where we were going. Even now, I color-code my Google Calendar <i>in addition to</i> my paper planner.</div>
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When I found out I had endometriosis, that changed.</div>
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It's difficult to plan around a chronic, painful illness when you're not sure how you will feel from one day to the next. Or one hour to the next. Or minute... you get the idea.</div>
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When your body starts to dictate the way you eat, move, work, dress and everything in between, it rules your entire life. Whether you like it or not.</div>
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In a lot of ways, I've become the person that used to drive me up a wall. I cancel plans last-minute. I bail on obligations, even though, in my heart, I desperately <i>want</i> to do what I signed up to do. Because of that, I fear making long-term, involved commitments that I may need to roll back later. And I hate to let people down.</div>
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With the <a href="http://www.stillsunflowers.com/2016/11/a-second-surgery.html">surgery I had last November</a>, my pain level has been more manageable as of late, leading me to sign up for <i>everything. </i></div>
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You want me to mentor young women? Great. That's totally outside my comfort zone, but I'm all about that right now. Or hey, Tracy, do you want to talk to people about your experience with domestic violence? Yes. I will do that right now. Or maybe you'd like to give a talk about endometriosis? Absolutely. Let me at it.</div>
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I will be the everything to everyone! <i>Everyone!</i></div>
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I used to do this frequently, before I was diagnosed with endometriosis. I call myself a "chronic volunteer." If there is<i> </i>an opportunity out there to help, then I definitely believe they're asking me - and just me - to be the one to do it.</div>
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Taking advantage of my wellness isn't necessarily a bad thing. But even as I attend volunteer orientations or meticulously plan out a PowerPoint presentation, I worry if I'll be able to show up on the day that I'm supposed to do something.</div>
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I should sign on every dotted line with an asterisk, from now on. "*Yes, I will do this, but if my uterus hurts, I'm staying home, sry."</div>
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In some ways, endometriosis has been a good thing for my need to plan. I've become more spontaneous and more open to doing "whatever" when I feel well. It's given me less time to mull over my disease or pain or other symptoms.</div>
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But it's also made me pretty tired. And, frankly, it's been kind of expensive.</div>
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Endometriosis is a progressive disease, meaning that I can expect to feel worse as time goes on. And it's kind of hard to explain, but it's forced me to confront my own mortality, even though it's not a terminal illness. Maybe a better word is that it's forced me to confront my "able-bodiedness." (It's a word now, if it wasn't before.)</div>
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My husband, Andrew and I planned out a vacation this summer. Since we're avid concert goers, we try to do a vacation one summer and then a music festival the next. </div>
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After we booked that vacation, I found out my favorite band of all-time, U2 (don't hate) is going on tour.</div>
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Now, I like to think of myself as a fiscally responsible person, to the point of nearly being financially neurotic. I've gotten better about it over time, but I used to refuse to spend money on myself. So when I saw that U2 - a band that's "getting up there" in age - would be touring, I jumped on the tickets, even though I immediately grumbled about how "irresponsible" I was being because we <i>just</i> planned a vacation.</div>
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But I'm not promised a healthy body next year or even next month. When I was diagnosed with endometriosis at age 24, I immediately developed a feeling that I was running out of time. There will likely come a day when I can't hike through a national park or dance for three hours at a concert. And it will likely be sooner for me than it will be for most people.</div>
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Already, I have difficulty walking some days. The sciatic nerve that goes from my left hip through my left knee is the source of much of my pain, and when that flares up, even moving around my home can be difficult.</div>
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At the grocery store with my husband this week, I hunched over a shopping cart like my 100-year-old grandfather does over his walker. (He really <i>is </i>100.) I dragged my leg behind me and periodically made pained expressions while shooing Andrew away when he offered to take the cart.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">When my song comes on in the club</td></tr>
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Andrew and I want to travel and share experiences while I'm healthy and while my episodes of limited mobility are infrequent. We want to do things now before I find out I have <i>yet another</i> autoimmune disease or need <i>another</i> invasive treatment or surgery.</div>
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But in addition to that, my health has interfered with every other major life plan that one could have.</div>
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Do I want to go to grad school some day?<br />What do I want my career to look like?<br />Can I ever travel internationally?<br />Should I take up this two-year commitment?<br />Am I physically able to ever be a parent?</div>
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That's when it gets even harder to plan. When my goals cost serious cash or dramatically impact another person, I have to pump the brakes and think hard about it. Yes, I can't let everything take a backseat to endometriosis, and I absolutely don't. But there has to be a point in which I'm honest with my limitations.</div>
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This may seem like a downer of a blog post, but I assure you that it isn't for me. If anything, it's made me more appreciative of my good days. It's what pushes me to exercise, leave my house and try new things when I feel well enough.</div>
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When you feel like your days are limited in a way, you start to live a little more.</div>
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Because of endometriosis, it will probably be a little bit of time before Andrew and I stop renting and buy a house. I will probably never be a parent (my likely infertility and discomfort around children aside.) I may not be able to fit in all of the things you're "supposed" to do before you turn 40. And my planner may be filled with more "suggestions" than obligations, now...</div>
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But, at least right now, I don't feel like I'm living a limited life. As much as I wish I could plan like the next person, I know that none of us are guaranteed tomorrow. There's a tendency to feel invincible in your 20s that I've never truly felt, and in a way, I'm thankful that I learned it earlier rather than later.</div>
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So until endometriosis <i>does</i> take away my ability to do the things I love, I won't let it. And when I have to rip up my best-laid plans, I will try my hardest to limit my anguish, self-blame and disappointment. Because I know that I'm doing everything I physically can at the moment, while learning to take care of this sore and fickle body.</div>
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So yeah. Remind me I said all of this next time I have to text someone "Sorry, I can't make it."</div>
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Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com33tag:blogger.com,1999:blog-9150378473884064415.post-29100380043287732562017-02-09T10:50:00.003-05:002017-02-09T10:57:18.372-05:00Vulnerability and Presence<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-4us1DXEdZ7o/WJs5oXF5YhI/AAAAAAAAAis/pG-p1SO5W_UUfSfRv32UbBoubIVKsWt8gCLcB/s1600/IMG_0648.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://3.bp.blogspot.com/-4us1DXEdZ7o/WJs5oXF5YhI/AAAAAAAAAis/pG-p1SO5W_UUfSfRv32UbBoubIVKsWt8gCLcB/s400/IMG_0648.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sick Girl Club</td></tr>
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So the photo above represents the past few (crappy) weeks of my life. </div>
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About two weeks ago, endometriosis handed me a horrible bout of menstrual cramps, which have been weird to adjust to. Up until my surgery in November, I had been on continuous birth control for about two or three years and hadn't had a scheduled period during that time. Now, with my IUD, I get one every month - at least for a little while.</div>
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When I knew I'd once again be joining this world I thought I'd left behind, I was like, "PFFT. I'm a seasoned veteran of painful uteri. I've got this."</div>
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Anyway, no. I didn't "got" this. It still hurts, no matter how long you've gone without feeling it.</div>
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After I recovered from that week of laying around and being useless, I was hit with a double whammy. I caught a miserable cold that decided to linger as long as possible, and at the same time, my dog, Juno got really, really sick.</div>
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Juno suddenly stopped eating and spent her usually energetic mornings laying on the couch or curled up in a ball. It got to a point where I started to seriously worry, so I called our vet. This is how all of my phone calls to our poor vet go:</div>
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"Hiiii, umm, this is Juno's mom. Uhhh she's doing this thing, and I'm not sure if she's sick, but she really seems sick, and I don't know, am I crazy? Should I bring her in? Is this worth spending a ton of money on? Fix my broken dog, pleeeease."</div>
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Some things never change.</div>
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Long story short, it was a good thing I brought her in because she probably <u><i><b>would have died</b></i></u> had I not. After a few days of tests and fluids and me trying not to lose my shit over my fur-baby, our very smart and very astute vets diagnosed her with Addison's disease. This means her adrenal gland isn't producing the hormones that it should, leading her to lose energy and her appetite. </div>
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Thankfully, it's treatable, and as long as we manage it, Juno will lead a full, happy, healthy life. In fact, she seems back to her normal self right now.<br />
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But oh my god, I almost cried in that vet office like three times. Thank God our vets are wonderful people who love my dog because I probably would have lost my mind.</div>
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So. All of this is to say it's been a tough and sick few weeks. My husband, Andrew managed to stay healthy and calm throughout it all, so whatever, screw him!</div>
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After I took a long weekend to regroup from all of this, I received an email in my inbox Monday morning:</div>
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<b>"Congratulations! Your proposal has been accepted to the social justice symposium!"</b></div>
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.........I did what? </div>
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It came from one of the universities in the area, and this symposium sounded vaguely familiar. I stared at this email with my head tilted for a solid two minutes before I realized what the hell it was.</div>
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"OOOH YEAH. I remember applying to this now!"</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Some people have a fun night out, send regrettable text messages and wake up the next morning with no memory of doing so. Tracy, on the other hand, sends presentation proposals to local universities and totally forgets she ever did such a thing.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Once it all came flooding back to me, I remembered my presentation topic: the difficulty many women face in getting medical professionals to take their pain and other serious symptoms seriously.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
You know, the story of my life.</div>
<div style="text-align: justify;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-GZ-cxbtzCic/WJs9CV6Aa3I/AAAAAAAAAi8/WKX11Bq3JPElKYDc9LE3JJZoKLMlYL47gCLcB/s1600/giphy.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="120" src="https://4.bp.blogspot.com/-GZ-cxbtzCic/WJs9CV6Aa3I/AAAAAAAAAi8/WKX11Bq3JPElKYDc9LE3JJZoKLMlYL47gCLcB/s400/giphy.gif" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">1D wasn't that bad, don't @ me.</td></tr>
</tbody></table>
<div style="text-align: justify;">
In scrambling to prepare a presentation that makes me look like I know what I'm talking about, I've been thinking about how vulnerable I should be in this and in my stories about endometriosis in general. Obviously, I'm always honest about what I'm up against. But complete vulnerability has been harder.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
In an era when everyone has a voice and a platform, sometimes in multiple places, it's sometimes hard to walk the line between "helpful vulnerability" and "that was way too much information, you need to dial that shit down."</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
For example, I have vulvodynia as a byproduct of my endo, which makes exams and sex and everything else related to that <i>extremely painful.</i> But I just don't like talking about it. That's just unquestionably private for me, even though I welcome and celebrate other people who want to talk about these things. And it kind of sucks, because I think more people <i>do</i> need to talk about it! Just... not me, I guess.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Another thing I don't spend a ton of time talking about is my relationship with my body. Well, I have before, I suppose, but I don't like to post photos of my scars or bloated stomach or any of the other nitty-gritty details of living with endometriosis. (Side note: Chrome asked if I meant "titty-gritty" instead of "nitty-gritty." Yes, Chrome, that is what I meant, thanks.)</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I guess my reasoning for that is, why would I? Scars are scars, and everyone has at least one of them. I have a ton on my abdomen from surgery, face from acne and places that met asphalt from that time I fell of my bike.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I'm not ashamed of them. In fact, when a dermatologist once offered to buff out the scars on the bridge of my nose from the chicken pox I had as a kid, I yelped. "No! I like them!"</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
So, I don't know. Is there a benefit in sharing those details? Are those things that I feel the world <i>needs</i> to know to understand endometriosis?</div>
<div style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-HwJXTLxbR2I/WJtBoJ47cPI/AAAAAAAAAjU/2hjPINzpsI4rsFv08GHgijf2LaEBp5FcwCLcB/s1600/giphy2.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="223" src="https://2.bp.blogspot.com/-HwJXTLxbR2I/WJtBoJ47cPI/AAAAAAAAAjU/2hjPINzpsI4rsFv08GHgijf2LaEBp5FcwCLcB/s400/giphy2.gif" width="400" /> </a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
With this presentation, I face the challenge of not only explaining my illness and this frustrating trend in women's health. But I also have to tell them why they should give a shit.</div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
When you're consumed by a cause, that's sometimes hard to do. It seems so obvious. "Women are in pain, and no one is listening to them! Why doesn't this seem like an urgent problem that needs your attention and involvement?!" But it's, unfortunately, not always so obvious to an outsider.</div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
</div>
<div class="separator" style="clear: both; text-align: justify;">
How much vulnerability and emotional labor does it require of me to make someone believe? Not necessarily with this presentation I just remembered I signed up for. I mean in the grand scheme of my advocacy.</div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
Lately, I've been pretty consumed by the state of affairs in our world. I attended my city's local women's march last month. My grandparents were Ukrainian refugees, so I'm involved in those issues, too. And when another issue I care about pops up literally every single day, I feel like I'm spinning a bunch of plates that are rotating at supersonic speeds and oh my gosh, what was life like before this?!</div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
My news and politics obsession became so overwhelming recently that I had to have a chat with myself and take advice that I've been trying to take my entire life: <b>Choose your battles. </b>Allow separation. Allow breathing room.</div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
My thinly veiled guilt complex makes me feel as though every task, every fight is mine to shoulder. But I'm trying to remind myself, "Tracy, no one is on pins and needles, waiting for you to say something."</div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
<b> </b></div>
<div class="separator" style="clear: both; text-align: justify;">
Yes, it's incredibly important - it's vital - to be part of causes you care about. But you aren't required to wear yourself thin to do so. And the entire cause isn't going to go to shambles, simply because you didn't cram absolutely everything you wanted to or felt like you should in that blog post you wrote or presentation you gave.</div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
Anyway, this meandering blog post is more for myself than anyone, I guess. But in a time when so many people I know are fatigued, I hope someone will get something out of this, too.</div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
I celebrate vulnerability and welcome it. I think this breaks down stigma and helps people get the support they need.</div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
But as I've heard so often lately, "You cannot pour from an empty cup." And I'm trying to let that be true for myself.</div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com145tag:blogger.com,1999:blog-9150378473884064415.post-84627504805780654412017-01-13T13:33:00.003-05:002017-01-13T13:35:18.524-05:00I Was Healthy Until I Wasn't<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-LKINkEHBYrY/WHkc1Pw7zWI/AAAAAAAAAiM/PTWHoMBx69Y8xdKA3CReq7fyVeqQzLHdACLcB/s1600/14955979_10206430965407987_4110789876163771120_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://3.bp.blogspot.com/-LKINkEHBYrY/WHkc1Pw7zWI/AAAAAAAAAiM/PTWHoMBx69Y8xdKA3CReq7fyVeqQzLHdACLcB/s640/14955979_10206430965407987_4110789876163771120_n.jpg" width="425" /></a></div>
<br />
<div class="section-content">
<div class="section-inner sectionLayout--insetColumn">
<div class="graf graf--p graf--leading" id="e936" name="e936">
<i class="markup--em markup--p-em">My
health care story isn’t necessarily dramatic. I don’t have cancer. I’m
not disabled. I’m not dying. And I’m not in danger of those things any
time soon, hopefully.</i></div>
<div class="graf graf--p graf--leading" id="e936" name="e936">
<br /></div>
<div class="graf graf--p graf-after--p" id="4f74" name="4f74">
<i class="markup--em markup--p-em">But I think that’s what makes my story compelling — how ordinary it is, how easily it happened to me and could happen to you.</i></div>
<div class="graf graf--p graf-after--p" id="4f74" name="4f74">
<br /></div>
<div class="graf graf--p graf-after--p" id="e821" name="e821">
2014
was a great year for me. I turned 24. I started a job I love. I adopted
a dog. I moved into a new place. I got married. And all of that was
within one summer.</div>
<div class="graf graf--p graf-after--p" id="e821" name="e821">
<br /></div>
<div class="graf graf--p graf-after--p graf--last" id="0522" name="0522">
Just
a few months after my husband and I said “I do,” 2014 became the year I
found out what 13 years of chronic pain and other symptoms signaled. I
had an incurable illness.</div>
<div class="graf graf--p graf-after--p graf--last" id="0522" name="0522">
<br /></div>
<div class="section-content">
<div class="section-inner sectionLayout--insetColumn">
<div class="graf graf--p graf--leading" id="7965" name="7965">
Endometriosis
is a sneaky disease. It arrives at the onset of puberty (for me, age
11) and takes a chokehold of your entire body. Unknown to my teenage
self, cells that my body should have been shedding regularly through
menstruation were abnormally implanting outside of my uterus, causing
lesions, adhesions, scarring and, most obviously, excruciating pain and
excessive bleeding.</div>
<div class="graf graf--p graf--leading" id="7965" name="7965">
<br /></div>
<div class="graf graf--p graf-after--p" id="a4df" name="a4df">
But
from age 11 until 24, doctor after doctor wrote off my fainting
episodes, writhing pain that gave me cold sweats and spasms, and the
overall necessity to schedule my life around a normal bodily function as
“all in my head.” I later found out that response was par for the
course for women with my disease.</div>
<div class="graf graf--p graf-after--p" id="a4df" name="a4df">
<br /></div>
<div class="graf graf--p graf-after--p" id="c318" name="c318">
When
I left for college, I knew that I couldn’t get a degree and live like
this at the same time. So they offered me the only medication that could
somewhat manage my severe pelvic pain: birth control.</div>
<div class="graf graf--p graf-after--p" id="9875" name="9875">
The
first time I filled it, I walked to the Walgreen’s down the street from
my dorm. Up until then, my mom had managed any medications I needed, so
I had never been financially responsible for my own care. I didn’t
think much of it. My parents had never commented on how much
prescriptions cost.</div>
<div class="graf graf--p graf-after--p" id="9875" name="9875">
<br /></div>
<div class="graf graf--p graf-after--p" id="9b41" name="9b41">
The pharmacist rang up my bill. “$62.”</div>
<div class="graf graf--p graf-after--p" id="9b41" name="9b41">
<br /></div>
<div class="graf graf--p graf-after--p" id="9d63" name="9d63">
My stomach lurched. $62 on what income? The savings I’d accumulated for emergencies?<br />
</div>
<div class="graf graf--h4 graf-after--p" id="322a" name="322a">
<b>On
average, my prescription birth control to manage my crippling pain cost
anywhere from $60 to $90. For a college student who earned a small wage
through two campus jobs, it was devastating.</b></div>
<div class="graf graf--h4 graf-after--p" id="322a" name="322a">
<br /></div>
<div class="graf graf--p graf-after--h4" id="ba9b" name="ba9b">
Prior
to my endometriosis diagnosis, my interactions with the health care
system were fairly limited. I wasn’t privy to the costs of caring for my
mom’s cancer when I was in middle school or when she was diagnosed
again the summer of my sophomore year of college. I didn’t know what
“insurance premiums,” “co-pays” or “deductibles” were.</div>
<div class="graf graf--p graf-after--h4" id="ba9b" name="ba9b">
<br /></div>
<div class="graf graf--p graf-after--p graf--last" id="c46c" name="c46c">
But suddenly, at age 18, the vocabulary that comes with a chronic illness became my lingo. And I didn’t even <i class="markup--em markup--p-em">know</i> I had a chronic illness yet.</div>
<div class="graf graf--p graf-after--p graf--last" id="c46c" name="c46c">
<br /></div>
<div class="graf graf--p graf--leading" id="a468" name="a468">
Halfway
through my bachelor’s degree, the Affordable Care Act passed. At the
time, to be honest, I hated the idea. Why would I want to be responsible
for a complete stranger’s care? It angered me to think of being saddled
with the cost of someone’s acupuncture, chiropractor or some other
medical procedure I then thought was bullshit.</div>
<div class="graf graf--p graf--leading" id="a468" name="a468">
<br /></div>
<div class="graf graf--p graf-after--p" id="2e5a" name="2e5a">
But
I remember one particular day when I drove to pick up my birth control a
year or two after graduation. Still fighting chronic pain and a long
list of other endometriosis symptoms, I was still on the same medication
a pharmacist rang up for me when I was 18. Bracing myself for the cost
of my birth control, I rolled up to the drive-thru window and waited.</div>
<div class="graf graf--p graf-after--p" id="2e5a" name="2e5a">
<br /></div>
<div class="graf graf--p graf-after--p" id="e8c0" name="e8c0">
This time was different. “There’s no cost. Have a great day.”</div>
<div class="graf graf--p graf-after--p" id="e8c0" name="e8c0">
<br /></div>
<div class="graf graf--p graf--startsWithDoubleQuote graf-after--p" id="30cf" name="30cf">
“What?” my eyes widened. I snatched the paper bag from the pharmacist’s hand, and sure enough, in bold print, it said, “$0.00.”</div>
<div class="graf graf--p graf--startsWithDoubleQuote graf-after--p" id="30cf" name="30cf">
<br /></div>
<div class="graf graf--p graf-after--p" id="469d" name="469d">
I pushed a huge gulp of oxygen out of my lungs. “Thanks, Obama.”</div>
<div class="graf graf--p graf-after--p" id="469d" name="469d">
<br /></div>
<div class="graf graf--p graf-after--p" id="2230" name="2230">
This medication sustained me for a little while longer. And then my symptoms began to change.</div>
<div class="graf graf--p graf-after--p" id="2230" name="2230">
<br /></div>
<div class="graf graf--p graf-after--p" id="1188" name="1188">
No
longer were my health concerns limited to pelvic pain and hemorrhaging.
My period pain morphed into an ever-present ache that made it hard for
me to wake up in the morning, drag myself to work and do my job. My body
also started rejecting nearly every type of food I ate, so that my
after-work routine quickly turned into “eat, writhe in pain, pass out
for hours, wake up, get ready for bed, go back to sleep.”<br />
</div>
<div class="graf graf--h3 graf-after--p" id="e35a" name="e35a">
<b>
My body weight plummeted to 108 lbs. I’m 5'10".</b></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody></tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-666ON5OwyYY/WHkdOJ45jMI/AAAAAAAAAiQ/TCa8uYEqkek4m6qe4YcAeTkjCY8O-FrvQCLcB/s1600/11377080_10203683026271226_4316433540764974973_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://1.bp.blogspot.com/-666ON5OwyYY/WHkdOJ45jMI/AAAAAAAAAiQ/TCa8uYEqkek4m6qe4YcAeTkjCY8O-FrvQCLcB/s400/11377080_10203683026271226_4316433540764974973_n.jpg" width="241" /></a></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td class="tr-caption" style="text-align: center;">At my sickest</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody></tbody></table>
<div class="graf graf--h3 graf-after--p" id="e35a" name="e35a">
</div>
<div class="graf graf--p graf-after--figure" id="b52b" name="b52b">
What
followed can easily be traced through my medical expenses: an emergency
room visit; a misdiagnosis; a procession of well-meaning, but unhelpful
doctors; an unbelieving ob-gyn from whom I had to demand a diagnostic
procedure; a litany of pills; and a surgery.</div>
<div class="graf graf--p graf-after--figure" id="b52b" name="b52b">
<br /></div>
<div class="graf graf--p graf-after--p" id="c45d" name="c45d">
I still remember coming out of the haze of anesthesia and seeing my doctor peering over me. <b class="markup--strong markup--p-strong">“You definitely have endometriosis.”</b></div>
<div class="graf graf--p graf-after--p" id="c45d" name="c45d">
<br /></div>
<div class="graf graf--p graf-after--p" id="094f" name="094f">
That
same doctor spoke directly to my husband of four months (not me) when
he told me I needed to get pregnant “right away” if I ever wanted to
have children. That same doctor shuffled me out of his room without a
single pain pill or treatment plan. The doctor who had rolled his eyes
when I asked for help with my condition simply left me high and dry.</div>
<div class="graf graf--p graf-after--p" id="094f" name="094f">
<br /></div>
<div class="graf graf--p graf-after--p" id="c895" name="c895">
As soon as I received a diagnosis and a pile of medical bills, I hit a dead end.</div>
<div class="graf graf--p graf-after--p" id="c895" name="c895">
<br /></div>
<div class="graf graf--p graf-after--p" id="3174" name="3174">
<b class="markup--strong markup--p-strong">But thanks to the Affordable Care Act, I wasn’t out of options.</b>
Though many women before me had been limited in their search for an
ob-gyn, I quickly “fired” my doctor and found a new one who specialized
in endometriosis.</div>
<div class="graf graf--p graf-after--p" id="3174" name="3174">
<br /></div>
<div class="graf graf--p graf-after--p" id="78a1" name="78a1">
And
although I’d been given a nice chunk of costs to follow the money I’d
just recently spent on my wedding, I didn’t have to pay more than
necessary for my health care because of my sex.</div>
<div class="graf graf--h3 graf-after--p graf--last" id="2361" name="2361">
But most importantly, I wasn’t going to be kicked off of my insurance simply because I needed to actually use it.</div>
<div class="section-content">
<div class="section-inner sectionLayout--insetColumn">
<div class="graf graf--p graf--leading" id="7bba" name="7bba">
As
part of the “incurable” of my incurable illness, I need frequent
surgeries. Right now, the only way to manage my endometriosis is to cut
me open and burn out however many sites are able to be burnt off.</div>
<div class="graf graf--p graf-after--p" id="a573" name="a573">
Fate would have it that my second-ever surgery was scheduled the day after Election Day, 2016. I was 26 years old.</div>
<div class="graf graf--p graf-after--p" id="fab4" name="fab4">
I
stared at the ceiling as Hillary Clinton’s concession speech played in
the surgery prep room next to mine. Nurses spoke in hushed tones over it
and shook their heads as I squeezed my eyes shut and absorbed the
gravity of the situation.<br />
</div>
<div class="graf graf--h3 graf-after--p" id="196a" name="196a">
<b class="markup--strong markup--h3-strong">Two surgeries in two years. Would this be the last one I could have?</b></div>
<div class="graf graf--h3 graf-after--p" id="196a" name="196a">
<br /></div>
<div class="graf graf--p graf-after--h3" id="6869" name="6869">
Seeing
the writing on the walls before Election Day, my mind had flashed back
to the times I cried over the cost of my prescription birth control — a
cost my husband and I couldn’t afford to incur. Days before my surgery, I
called my ob-gyn in a panic. “Can you put in an IUD?”</div>
<div class="graf graf--p graf-after--h3" id="6869" name="6869">
<br /></div>
<div class="graf graf--p graf-after--p" id="4413" name="4413">
An
IUD would not only guarantee that I couldn’t get pregnant (if I can
conceive at all) as a woman with a high risk for miscarriage,
stillbirth, ectopic pregnancy and other potentially life-threatening
complications. It would also hopefully (and that’s a <i class="markup--em markup--p-em">big </i>“hopefully”) slow the growth of my endometriosis.</div>
<div class="graf graf--p graf-after--p" id="4413" name="4413">
<br /></div>
<div class="graf graf--p graf-after--p" id="2c41" name="2c41">
It
was a gamble. There was a likelihood my body would reject it. IUDs
shift out of place frequently, so it could easily perforate my
paper-thin uterus. It could cause me more problems and more expenses
than my condition offered me on its own.</div>
<div class="graf graf--p graf-after--p" id="2c41" name="2c41">
<br /></div>
<div class="graf graf--p graf-after--p" id="d87f" name="d87f">
But
at that point, I would do anything for some semblance of “peace of
mind.” An IUD would potentially last me five years. Hopefully, (again,
another <i class="markup--em markup--p-em">b</i>ig<i class="markup--em markup--p-em"> “</i>hopefully”) that would be enough.</div>
<div class="graf graf--p graf-after--p" id="d87f" name="d87f">
<br /></div>
<div class="graf graf--p graf-after--p" id="8da0" name="8da0">
This
time around, I came out of anesthesia to immediate fear. Post-surgery
pain slid around me like two snaking arms, and I shuddered from the
after-effects of my sedative. An attendant quickly administered
morphine, but not before I felt the terror that many chronic pain
patients feel. <i class="markup--em markup--p-em">“Wait. I can feel like this?”</i></div>
<div class="graf graf--p graf-after--p" id="8da0" name="8da0">
<br /></div>
<div class="graf graf--p graf-after--p" id="95dd" name="95dd">
I
thought about not being able to afford the pain medication that I take
on my worst days. Or the other pills that help me go to work, drive a
car, clean my house, sit up straight and live a normal life. I thought
about having to lose so much more of my young life than I had already
been forced to sacrifice, due to my illness.</div>
<div class="graf graf--p graf-after--p" id="95dd" name="95dd">
<br /></div>
<div class="graf graf--p graf--startsWithDoubleQuote graf-after--p" id="0647" name="0647">
“You don’t have insurance through Obamacare,” others had told me. “Why are you so worried?”</div>
<div class="graf graf--p graf--startsWithDoubleQuote graf-after--p" id="0647" name="0647">
<br /></div>
<div class="graf graf--p graf-after--p" id="3353" name="3353">
Facing
down another surgery bill that has yet to hit my mailbox, I worry about
lifetime caps that would limit how many times I could have a surgery
that is truly my only “treatment.” Or my body someday rejecting my IUD
and forcing me to pay for expensive birth control again. I worry that
the insurance provider that gave me a second chance of life could easily
drop me, when given the opportunity. I’m sick over the fact of getting
sicker and having nowhere to turn. I often think about being forced to
quit my job to take care of myself, or losing our rental home, or having
the joy I find in life completely sucked away.</div>
<div class="graf graf--p graf-after--p" id="3353" name="3353">
<br /></div>
<div class="graf graf--p graf-after--p" id="5879" name="5879">
The
truth is, I don’t expect to have the physical abilities I have now when
I’m older. I expect to get sicker. And as anyone with a chronic illness
can tell you, it’s rarely just <i class="markup--em markup--p-em">one </i>illness
that you end up fighting. It’s why I carefully monitor my body for
symptoms that signal a new auto-immune disease, a new army of doctors, a
new assortment of pills and a new list of medical bills.</div>
<div class="graf graf--p graf-after--p" id="7998" name="7998">
It’s not paranoia. It’s my reality.</div>
<div class="graf graf--p graf-after--p" id="7998" name="7998">
<br /></div>
<div class="graf graf--p graf-after--p" id="dbeb" name="dbeb">
And
I don’t just worry about me. I worry about my mom who has been fighting
stage IV cancer for nearly seven years. I worry about my sister with
autism, my friends who <i class="markup--em markup--p-em">do</i> have
insurance through the Affordable Care Act, my community of women with
endometriosis who suffer more significantly than I do…</div>
<div class="graf graf--p graf-after--p" id="dbeb" name="dbeb">
<br /></div>
<div class="graf graf--p graf-after--p" id="3eb4" name="3eb4">
But I want to do more than just worry. And that’s why I’m sharing this story— as both a plea and a precaution.</div>
<div class="graf graf--p graf-after--p" id="3eb4" name="3eb4">
<br /></div>
<div class="graf graf--p graf-after--p" id="f50a" name="f50a">
I was perfectly healthy until I learned I wasn’t.<br />
</div>
<div class="graf graf--h4 graf-after--p graf--last" id="3e1d" name="3e1d">
<b>
This
is why I’m asking Congress to please protect health care for people
like me and people not like me. I can’t survive a day without health
care coverage. And in 2017, I shouldn’t have to.</b></div>
</div>
</div>
</div>
</div>
</div>
</div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com15tag:blogger.com,1999:blog-9150378473884064415.post-46590611648832744202016-12-19T12:03:00.004-05:002016-12-19T12:52:31.241-05:00Built on Hope<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-rqeo6CiGQhM/WFgK58XzpII/AAAAAAAAAgs/22qHAHUPoUEf-ZAnoNHdQbbl2rwbep26gCLcB/s1600/15589617_10206754056525063_4073636253062425556_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://3.bp.blogspot.com/-rqeo6CiGQhM/WFgK58XzpII/AAAAAAAAAgs/22qHAHUPoUEf-ZAnoNHdQbbl2rwbep26gCLcB/s400/15589617_10206754056525063_4073636253062425556_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm certain Bowie left this shirt for me after he passed...</td></tr>
</tbody></table>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
(Fair warning: This will be an exceptionally nerdy blog post because I really. really love Star Wars.)</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
So Saturday was the two-year anniversary of me being diagnosed with endometriosis - my endo-versary, if you will. But my mind wasn't really on it or even on what it should have been, which was the fact I'd be seeing Rogue One in mere hours.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Instead, feelings of sheer hopelessness and inadequacy decided to pile up that day.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
My husband, Andrew and I drove that afternoon to a local humane society, hoping to adopt a sister or brother for our dog, Juno. I have a bleeding heart for animals and will literally take any homeless animal that crosses my path, Andrew, on the other hand, is much more rational, assessing whether the dog will thrive despite our lack of fenced-in yard, whether he or she will get too big for our rental home, etc.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
So of course, this episode led to me falling in love with a yellow lab, only to have Andrew gently (and, admittedly, correctly) tell me she wasn't a good fit for our home. In fact, none of the dogs at the shelter that day were a good fit for Juno or our small house.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I guess my heart couldn't take another "no" because when we got to the car, I silently held back tears and drove us home. Once in our living room, I curled up on the couch with Juno and cried to Andrew, trying to explain my overflowing emotions that may or may not be directly related to my IUD - WHO KNOWS IT'S A MYSTERY.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Ever since my surgery, my life has felt like a long series of "no"s or "not good enough." My best efforts to support my health, benefit myself or even contribute to my community felt like a drop in the bucket. Like I was throwing effort, energy, time and money to the wind, only to have it come back that I wasn't making a difference. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Whether it was a lonely dog I wanted to give a home for Christmas, or money donated to a cause I care about, or a new treatment that I expected to alleviate my endometriosis pain, my best intentions were continually met with "no."</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
And I consider myself fairly patient, but when I can't make any headway at all, I tend to take it personally.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I managed to get my tears together in time to grab dinner with our friend who came with us to Rogue One. If one thing can briefly take my mind off my frustration, it's Star Wars. I've been pretty much obsessed with these movies since I was six years old, so as someone who has waited 20 years to see women as THE Star Wars hero, this is a great time in my life.</div>
<div style="text-align: justify;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-2NyY-BWOCKo/WFgOlo1O7aI/AAAAAAAAAg4/RaRZ09W0DOsv7u1leqg-7RoqskErFmQgwCLcB/s1600/15542060_10206769283065717_1239245667749129352_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="398" src="https://1.bp.blogspot.com/-2NyY-BWOCKo/WFgOlo1O7aI/AAAAAAAAAg4/RaRZ09W0DOsv7u1leqg-7RoqskErFmQgwCLcB/s400/15542060_10206769283065717_1239245667749129352_n.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Girl pwrrrrr</td></tr>
</tbody></table>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
So let me start this section off by saying it is <u style="font-style: italic; font-weight: bold;">REALLYYYY</u> difficult for me not to completely lose my shit over how good Rogue One was and ruin it for you, but I will try my damned hardest.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Without giving away the movie's glorious plot, I will summarize it as this. The main characters give so much to a cause and have no idea how much their actions will impact the grand scheme of everything that happens in Episodes IV-VI. They run at it headfirst because they believe in the cause, but there's honestly no expectation that they will succeed or that it will make difference. But they do it anyway because they care and hope so. much.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
And when that realization hit me in the last 15-ish minutes of the film, I literally started sobbing. Hard. In the middle of the movie theater. While my husband laughed and held my hand.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I continued to cry through the end of the movie and intermittently until we got to the car.</div>
<div style="text-align: justify;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-Ldhd8Djq31c/WFgP8uhjM7I/AAAAAAAAAhA/m5_5gmEbSVEkV8z4jwhvJe75WmPPbCgvgCLcB/s1600/IMG_0137.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://1.bp.blogspot.com/-Ldhd8Djq31c/WFgP8uhjM7I/AAAAAAAAAhA/m5_5gmEbSVEkV8z4jwhvJe75WmPPbCgvgCLcB/s400/IMG_0137.JPG" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Proof.</td></tr>
</tbody></table>
<div style="text-align: justify;">
My epiphanies tend to happen at unlikely moments and right when I need them. At that time, Rogue One was exactly what I needed to hear.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I understood the sensation of foolhardy hope and the overwhelming, consuming need to do <i>something</i>, to not just sit there idly and let things happen. It's why I made this blog to begin with. It's why I spend an entire day carting my husband around to gather things for a cause I need to help RIGHT NOW, NO NOT LATER, NOW.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
And while I feel that talking about my uterus, arguing with my doctors and begging strangers to take control of their health aren't even blips on the radar of history, they are.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I may not live to see a cure for my disease, but I hope and believe there's one out there. I at least know there are better treatments out there.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I may not live to see the causes I'm devoted to resolve themselves or end happily. But my effort does amount to something.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
One of my favorite lines from the film, which will <i>not</i> spoil Rogue One for you, is "Do you think anyone is listening?" I love that because it's something I say to myself so frequently, especially after I launch off an embarrassingly emotional blog post or leave a crabby voicemail at my doctor's office. Or in other words, "I've done my part. Now, what will people do with it?"</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
No matter how much it hurts or exhausts me, I'll continue doing my part for endometriosis advocacy. And I'll push myself to do more. Because I know I couldn't live with myself if I did nothing.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
If you're feeling like me about something in your life, I encourage you to keep doing what you're doing and never let the fear of ineffectiveness wear you out. As pessimistic as I've been about the world over the past few months (or year?), I do sincerely believe things come together the way they should when good people work hard toward an end. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I believe in a better future for our world. And we're the force to see it through.</div>
<div style="text-align: justify;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-TLEK-AwIAok/WFgSuVbluQI/AAAAAAAAAhM/5TBpoUtfNGkFH6nP6VmmgvIy2px18LDHQCLcB/s1600/15622342_10206764352582458_4826741584344843404_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://2.bp.blogspot.com/-TLEK-AwIAok/WFgSuVbluQI/AAAAAAAAAhM/5TBpoUtfNGkFH6nP6VmmgvIy2px18LDHQCLcB/s400/15622342_10206764352582458_4826741584344843404_n.jpg" width="337" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">xoxoxo</td></tr>
</tbody></table>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com181tag:blogger.com,1999:blog-9150378473884064415.post-6488298931789045602016-12-07T12:13:00.002-05:002016-12-07T12:14:01.273-05:00Hi-UD<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-Z6qk6O_F0uE/WEg9z2w0b5I/AAAAAAAAAgc/X9d-3Ns4bWkBPFy84PcKJdBxMETjREIFwCLcB/s1600/IMG_0030.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://2.bp.blogspot.com/-Z6qk6O_F0uE/WEg9z2w0b5I/AAAAAAAAAgc/X9d-3Ns4bWkBPFy84PcKJdBxMETjREIFwCLcB/s400/IMG_0030.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I pretty much wanted to show off my new gym shoes.</td></tr>
</tbody></table>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Approximately three weeks after my surgery, I emerged the cave that is my home, shriveled in the sunlight and trudged to the gym. I was anxious to get back, and not only because my in-laws gave me a sweet early Christmas present: bright pink running shoes. I could feel my back and shoulders aching the way they do when I'm inactive. And I was feeling pain up and down my legs that I thought some cardio would fix.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
So when I finally scanned my neglected gym membership card and hopped on to the elliptical, I felt empowered. I basked in the joy of overcoming a sliver of my illness. I managed to run two-and-a-half miles (slower and with less resistance than I usually do), and I came home with a renewed sense of strength.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
In my surgery, I got a Mirena IUD placed. Given the mixed reviews women have with IUDs, I was really worried that my body would immediately reject it. (I've heard some horror stories...) But for those three weeks, my uterus cooperated, to my relief. And being able to manage the gym was a sure sign to me that my IUD was here to stay. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
...and then two days later, I spent an entire day trying not to throw up.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I had already lost six pounds since my surgery (uh what?), so I was concerned with this nausea that seized my entire body for 24 hours. I could hardly concentrate on work, and any time I sat upright, waves of sickness would overcome me. I spent that afternoon sort of leaning on the couch so that I could still work and not vomit all over my laptop.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
After work, my husband, Andrew and I went to check out a rental home we were considering moving into. As I was scanning the living room, my body said, "No, seriously. You're going to puke." </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I immediately walked away and pretended to be super interested in the yard that I had already looked at. There was no way I was going to throw up in this poor woman's house. Andrew came out to check on me, knowing I was sick, and I asked him to apologize to the landlord for me. I thankfully never did throw up...</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
On the way home, we stopped less than a mile from our home so that I could spit into the grass a few times. And as soon as we walked through the door, I flopped down on the bed with a mop bucket next to me and took a nap. I woke up at 7:30 p.m., tried to eat something and immediately realized that wasn't going to work out. So I went back to bed at 8:30 p.m. and gave up on the day.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
"What was <i>that</i>?" I wondered the next day. "Is this just a thing that's going to happen from now on? Or did I catch a 24-hour flu? Just, what <i>is</i> this?"</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
That sort of nausea, plus the new breakout of acne on top of my already scarred cheeks, wasn't something I wanted to deal with. While an IUD would potentially stave off endometriosis growth and keep me from having to worry about birth control pills, these were very inconvenient side effects... </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I messaged a few endo sisters, asking for input. They sympathized, each having their own tales of IUD woes. Of course, it was still a little early to tell whether or not these symptoms were directly related to my IUD. But I had a pretty good feeling they were...</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Here's the ironic thing I've noticed about IUDs. All of the women I know who have them and don't have serious reproductive issues LOVE THEM. They were the ones who were most vocal in supporting my decision to get one.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
But my friends with endometriosis? "Yeah, go for it, if you want."</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
That should have tipped me off that having an IUD might not be smooth sailing. <i>Of course</i> one of the limited treatment options for endometriosis would offer a slew of side effects to the women it's supposed to help!</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Again, it's still early to see whether or not my IUD will be more trouble than it's worth. But I've unfortunately had quite a few endo sisters get theirs removed after a few months. Which, knowing that most women didn't have the luxury of being unconscious during insertion like I did, <i>really, really </i>sucks.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I'm keeping an eye on my side effects, harassing my dermatologist about my breakouts and crossing my fingers that everything will balance out. I'm hoping some of this weight I've lost comes back, but I've noticed my IBS-like symptoms have crept back since my surgery, too. (That I think is just a consequence of surgery.)</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Anyway, if any of this sounds like your IUD experience, please let me know. And if you're thinking about getting an IUD, please don't let my experience put you off! Every woman is different, and it might work perfectly for you! You never know until you try.</div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com2tag:blogger.com,1999:blog-9150378473884064415.post-61741124494082870762016-11-22T12:17:00.000-05:002016-11-22T12:32:22.637-05:00I'm Not Afraid of You<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-ryPTkuSaN64/WDRxJWm3z5I/AAAAAAAAAfg/XxeRa9OUw3I70E9czX1gXoCdGt1EY2ghACLcB/s1600/15037167_10206501334407168_6043616168361963910_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="357" src="https://3.bp.blogspot.com/-ryPTkuSaN64/WDRxJWm3z5I/AAAAAAAAAfg/XxeRa9OUw3I70E9czX1gXoCdGt1EY2ghACLcB/s400/15037167_10206501334407168_6043616168361963910_n.jpg" width="400" /></a></div>
<br />
<br />
<div style="text-align: justify;">
It's a little early to be thinking about 2017. But maybe because I'm so anxious for the disaster that is 2016 to be over, I've already started planning parts of next year.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Instead of a New Year's resolution, like many people make and often break, I create mantras for my year.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
It's an idea I picked up in therapy for depression and anxiety a few years ago. When faced with a panic-inducing situation, my therapist recommended repeating a mantra to help me work through it.<br />
<br />
Her suggestion was something like "This, too, shall pass." Mine ended up being "Will I die from this? No, I won't."</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
(It was a difficult year, okay?)</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Likewise, I've crafted a few mantras over the years to help me set a tone or mindset for the new year, rather than a list of things I'd like to accomplish that I'll forget about and never do.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
My junior year of college, my mantra was "Shameless," as in, "I'm going to do things without regard to what people think of me."</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
For 2016, it was "I will wear what I want." Pretty self-explanatory. The above picture is one of the products of that mantra.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
This upcoming year, my mantra is <b>"I'm not afraid of you."</b> And I've already started to apply it.</div>
<div style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-UwYEBW00xeQ/WDRzMr1HSdI/AAAAAAAAAfo/Lw6Es2gGR78bCIL7G_OfQgdcejPF0Jj6ACLcB/s1600/giphy.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="220" src="https://4.bp.blogspot.com/-UwYEBW00xeQ/WDRzMr1HSdI/AAAAAAAAAfo/Lw6Es2gGR78bCIL7G_OfQgdcejPF0Jj6ACLcB/s400/giphy.gif" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div style="text-align: justify;">
When facing <a href="http://www.stillsunflowers.com/2016/11/a-second-surgery.html">my second endometriosis surgery</a> two weeks ago, I couldn't deny that I was scared. Not so much for the surgery itself, although anesthesia always freaks me out, but because I didn't know what it would hold for me.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Looking back, my first surgery was a cluster. By that, I mean I had a doctor so hellbent on proving that I didn't have endometriosis that I don't believe I received the care that I needed. I know I can't really say that he for sure didn't get everything out in my surgery that he could have. But it's a feeling both me and my husband, Andrew have had.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
This time around, I found that my endometriosis has migrated to another organ, my bladder. And that was frustrating to hear but, ultimately, inevitable.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I was hesitant to even have this surgery done because, honestly, I was scared. I feared the IUD and pelvic floor injections that would be added to cutting and burning off endometriosis sites. I was afraid of a longer recovery and complications. I had it in my mind that my body would <i>hate</i> my IUD and that I'd be one of the horror stories in women's health magazines that read <b>"WOMAN'S UTERUS TWISTS AROUND IUD AND NOW SHE IS JUST A HEAD SOMEHOW."</b></div>
<div style="text-align: justify;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-curybPY9rZM/WDR2vyRxTCI/AAAAAAAAAf0/KbxPGxe9fsQ8B4QXdbK7-ALla8A35NWrgCLcB/s1600/giphy%2B%25281%2529.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://2.bp.blogspot.com/-curybPY9rZM/WDR2vyRxTCI/AAAAAAAAAf0/KbxPGxe9fsQ8B4QXdbK7-ALla8A35NWrgCLcB/s400/giphy%2B%25281%2529.gif" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"BAM. SCIENCE."</td></tr>
</tbody></table>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
But for most of these scary things that I confront with my illness, I won't know if it will help me until I get over my fear of more pain and more problems and just try.</div>
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<br /></div>
<div style="text-align: justify;">
The same goes for my fear of offending or annoying my doctors. For the most part, I got over that fear pretty damn quick. Having a bad doctor and a delayed diagnosis will make you appreciate self-advocacy a lot more... </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
But I still fear upsetting my physicians and other medical professionals with my insistence and stubbornness. I dread getting frustrated and tired over playing phone tag and begging for prior authorizations. I'm afraid of alienating people who are trying to help me when I say "no" to certain treatments or ask probing questions.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
But why? Honestly, why? What can I expect from doing nothing at all, besides more nothing?</div>
<div style="text-align: justify;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-JyotSZF-qNg/WDR5GcS4gQI/AAAAAAAAAgA/35_jaW-dqhsNipVlP2TfRAK1EzAK13IVQCLcB/s1600/tumblr_lvi1po6urQ1qm4pa7o1_500.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://1.bp.blogspot.com/-JyotSZF-qNg/WDR5GcS4gQI/AAAAAAAAAgA/35_jaW-dqhsNipVlP2TfRAK1EzAK13IVQCLcB/s1600/tumblr_lvi1po6urQ1qm4pa7o1_500.gif" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I essentially just wanted an excuse to use this gif...</td></tr>
</tbody></table>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
If I can be candid, the past few months of my life have been consumed with fear and anger. These feelings turned to numbness when election results rolled in the night before my surgery. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Deep down, I am still afraid. I'm afraid for my health care and any changes that could affect treatment for my chronic illness. I fear for my friends who have bigger fears, and I fear for how things around me will change. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
But most of all, I fear that I can't do anything about it.</div>
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<br /></div>
<div style="text-align: justify;">
And that's the purpose of my mantra: to force me to act in spite of my fear. Maybe a truer mantra would be <b>"Okay, I really <i>am</i> afraid of you, but I can't just stand here paralyzed, so I'm going to do something about it."</b> But that doesn't fit neatly at the top of my day planner...</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I still think I have plenty of reasonable fears. Like "I don't want to go out tonight because I hurt, and I'm afraid of hurting further." Or "I don't want to drive three hours by myself because I'm afraid I'll fall asleep."</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
But I'm learning to categorize some of these thoughts as "danger." "I'm in danger of hurting myself further from this action because it's happened before, like, every single time" as opposed to "I'm afraid of hurting more down the road from a treatment I haven't tried yet that I know can be successful."</div>
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<br /></div>
<div style="text-align: justify;">
<div>
I'm self-aware enough to know the difference between one and the other. And I can no longer be prisoner to fears that keep me from doing things that will help me or that I want to do.</div>
<div>
<br /></div>
</div>
<div style="text-align: justify;">
There have always been times I've feared how people will view me. I've feared losing friends or saying the wrong thing. I've feared feeling things I didn't want to feel or looking like an idiot. I've feared additional diagnoses and being told "Well, this is all we can do for you." But I'm turning all of my fears into action, advocacy and activism, as best as I possibly can.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
This week, Andrew and I booked a summer vacation. I'm taking advantage of the able body I currently have and pushing aside my fears of wearing myself out or ending up in pain while hiking through national parks. I know that Future Tracy will thank me for casting aside these fears and allowing myself freedom beyond my body.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
And soon, I will return to the gym for the first time since my surgery. I won't allow myself to be afraid to see how far I have to go in my recovery. Or afraid of how frustrated I'll be to see how much progress I lost. Or afraid of setting the elliptical to a lower speed and accepting that I have to start over.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
This is a conversation I will have to have with myself every day for the rest of my life, probably. But for now, I will move forward, even if it's a slow crawl at the start.</div>
<div style="text-align: justify;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-r8lUEjQ96Ko/WDR9Y9LtWjI/AAAAAAAAAgM/54iuwQ56R8oA4V8pw0NZEstTKKI9y34hACLcB/s1600/giphy%2B%25282%2529.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="222" src="https://4.bp.blogspot.com/-r8lUEjQ96Ko/WDR9Y9LtWjI/AAAAAAAAAgM/54iuwQ56R8oA4V8pw0NZEstTKKI9y34hACLcB/s400/giphy%2B%25282%2529.gif" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm just a baby sloth, guys.</td></tr>
</tbody></table>
<div style="text-align: justify;">
<br /></div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com15tag:blogger.com,1999:blog-9150378473884064415.post-6008895722725014912016-11-13T22:28:00.001-05:002016-11-13T22:39:17.389-05:00A Second Surgery<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-b0Bh_wN8uxQ/WCaq8AJuukI/AAAAAAAAAec/U8OJ4TYCedEQamGuNXeJ561EivjtglUOACLcB/s1600/20161109_103009.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://1.bp.blogspot.com/-b0Bh_wN8uxQ/WCaq8AJuukI/AAAAAAAAAec/U8OJ4TYCedEQamGuNXeJ561EivjtglUOACLcB/s400/20161109_103009.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Giant hands again</td></tr>
</tbody></table>
<div style="text-align: justify;">
This week, I had the unique pleasure of having surgery the day after Election Day. (I will reserve my comments on that for a later blog post.)</div>
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<br /></div>
<div style="text-align: justify;">
If you've followed my journey for a while, you'll know my <a href="http://www.stillsunflowers.com/2015/01/my-diagnosis-part-two-just-take-out-my.html">first surgery</a> (the one that diagnosed me) was done by a different doctor. I'm no longer with him because, in short, he wanted to prove I didn't have endometriosis, didn't give me any medication after my follow-up appointment and just told me to get pregnant. NEAT.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
My current ob-gyn, despite being chronically unavailable, is pretty great. She's always willing to work with me to find a treatment I'm comfortable being on, and most of all, she <i>gets </i>endometriosis. So when her nurse called me the day before to tell me I was in good hands, I sincerely believed it and still do.</div>
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<br /></div>
<div style="text-align: justify;">
My husband, Andrew and I showed up at the hospital after driving around looking for Door 5 forever. I promise my hospital isn't as sketch as this picture looks, but Andrew and I were both wondering if it meant I'd wake up years later from a coma during the zombie apocalypse... And I was kind of cool with it, given the election results.</div>
<div style="text-align: justify;">
<br /></div>
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<a href="https://1.bp.blogspot.com/-gth31oVgCjA/WCauFoWZTaI/AAAAAAAAAeo/VgN6F7-Jlbcl8LVo1FXBGEnUQVDGjAwOACLcB/s1600/20161109_085504.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="225" src="https://1.bp.blogspot.com/-gth31oVgCjA/WCauFoWZTaI/AAAAAAAAAeo/VgN6F7-Jlbcl8LVo1FXBGEnUQVDGjAwOACLcB/s400/20161109_085504.jpg" width="400" /></a></div>
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<br /></div>
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The two of us sat in the waiting room and tried to tune out CNN until I was taken back to my room. I didn't have to wait very long before that happened, but I <i>did </i>wait quite a long time between Andrew joining me in my room and my trip to the operating room.</div>
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<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
As I grappled with the fact this hospital didn't have HGTV and tried not to fall asleep from lack of coffee, I wondered what my surgery would hold for me. The goals this time were to 1) find any visible endometriosis sites and burn/cut it out, 2) check to see if I have interstitial cystitis because I GUESS not having any symptoms wasn't good enough proof, 3) do pelvic floor injections to get my muscles to relax for once in their lives and 4) insert a Mirena IUD to attempt to slow the endometriosis growth.</div>
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<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
With any endometriosis surgery, it's a gamble. What will they find? Where will they find it? Will everything work the way it's supposed to? Will I actually have less pain? How long will I have to wait until my next surgery? </div>
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<br /></div>
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I tried not to dwell, but it was hard to ignore when my best TV option was Pawn Stars...</div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-11-pwtrK8SY/WCaxljvWpXI/AAAAAAAAAe0/aD0BV0dVFQEfsYP16rXR5IFjrnKA1UFvACLcB/s1600/20161109_095838.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://2.bp.blogspot.com/-11-pwtrK8SY/WCaxljvWpXI/AAAAAAAAAe0/aD0BV0dVFQEfsYP16rXR5IFjrnKA1UFvACLcB/s400/20161109_095838.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">When you have endometriosis, you never know what's going to come through that door.</td></tr>
</tbody></table>
<div style="text-align: justify;">
I was due for surgery at 10:45 a.m., but as it approached noon, I still hadn't been moved. The longer I waited, the more tired and sore I became. I hadn't been allowed to take any painkillers for the two weeks prior to my surgery, and I desperately wanted a heating pad... or anesthesia. I'd take that, too.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I twisted in my bed, trying to get comfortable, and fell asleep at least twice before my ob-gyn and anesthesiologist showed up to talk about usual pre-surgery things. "We're going to cut you open..." Yep. "...and get rid of what we find..." Yeah. "...and it'll be great times." Totally.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
An attendant finally showed up to roll me away, and I kissed Andrew goodbye. As opposed to my first surgery, I was pretty chill about this one, but my heart always sinks before major medical procedures. It's almost like another part of me is being chipped away and given to a disease I can't cure and didn't ask for. So as I tried to crack jokes and smile at my husband, I choked up a little bit, just simply overwhelmed by the heaviness that is endometriosis.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
My operating room was absolutely freezing, as they tend to be, and my team of doctors buzzed around the room. They got me situated on the table and made sure I had plenty of warm blankets, which is seriously the best part of being at a hospital, besides the socks.<br />
<br />
Then came the mask. "This is just pure oxygen," my anesthesiologist said. I immediately became dizzy as the anxiety hit me.<br />
<br />
"Oh, you must be nervous!" a surgeon said. "Your heart rate just jumped."<br />
"Uhh yep!"<br />
<br />
My anesthesiologist soothingly told me to think of a nice dream to have, even though I never dream under anesthesia. (Do people do that?) I took deep breaths of oxygen, trying to calm myself down as three women stared down at me.<br />
<br />
Then one of them took my hand, and it was honestly the most important thing that happened to me that day. After remaining nearly speechless for 24 hours, numbed by a presidential election and my impending surgery, I wanted to cry as this complete stranger held my hand and anesthesia flooded my veins.<br />
<br />
I fell asleep holding her hand and woke up in an instant, hours later.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-b_NLz1mFncQ/WCkma6DU-II/AAAAAAAAAfE/FoBz01fo-CgtJDBKiOlXcZQkHSjHIfWvgCLcB/s1600/20161109_145507.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://2.bp.blogspot.com/-b_NLz1mFncQ/WCkma6DU-II/AAAAAAAAAfE/FoBz01fo-CgtJDBKiOlXcZQkHSjHIfWvgCLcB/s400/20161109_145507.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Post-surgery with apple juice</td></tr>
</tbody></table>
Just like my last surgery, I woke up on my left side. My teeth were chattering from the anesthesia and my pain was pretty... uhh... painful.<br />
<br />
"On a scale of 1 to 10..."<br />
Oh, here we go.<br />
"...how bad is your pain?"<br />
<br />
Unable to talk from the tube that had been down my throat, I held up seven fingers. Seven is usually a safe bet.<br />
<br />
But as my nurses talked among themselves, my pain escalated, and I hoarsely asked to be shifted to my back. That didn't help. I held up eight fingers.<br />
<br />
"Okay, well, your doctor didn't order you pain meds, so..."<br />
<br />
...excuse me, what?<br />
<br />
You cut into my uterus, burned off stuff and... <b><i>didn't order me pain meds?!?!</i></b><br />
<b><i><br /></i></b>
The nurses quickly called my doctor as I stared at the ceiling, wondering why the hell I didn't have morphine. I thanked them as they spoon-fed me ice chips and did That situation was remedied in a few minutes, luckily, and I focused on taking deep breaths to fully come out of anesthesia. I was having a lot of trouble keeping my eyes open this time, but instead of sleeping, I desperately wanted to know what happened in my surgery.<br />
<br />
I was soon wheeled into recovery to talk to Andrew about what my ob-gyn said and to watch Arthur:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-VfcZ2IP81Z8/WCkppRY2CiI/AAAAAAAAAfM/kitNVfoyB54KQWPTlZkQvCVxTb2-vMskQCLcB/s1600/20161109_150657.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://4.bp.blogspot.com/-VfcZ2IP81Z8/WCkppRY2CiI/AAAAAAAAAfM/kitNVfoyB54KQWPTlZkQvCVxTb2-vMskQCLcB/s400/20161109_150657.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My fave</td></tr>
</tbody></table>
As I slowly sipped some apple juice, Andrew retold what my doctor said and showed me pictures of my uterus (which I'll spare you).<br />
<br />
"It was everywhere."<br />
What does that mean?<br />
"I don't know. She said they moved something, and it was everywhere. You see those black dots?"<br />
Yeah.<br />
"That's what they burned off."<br />
Oh, yeah. That <i>is</i> everywhere.<br />
"They found some on your bladder..."<br />
Oh, great.<br />
"...but you don't have interstitial cystitis. "<br />
I TOLD them I didn't have it! I TOLD THEM.<br />
"But they said everything looked great. They did the injections, and you have an IUD."<br />
So that's it?<br />
"That's pretty much it."<br />
<br />
So that's all I really know right now about my surgery. Apparently, my doctor did come talk to me, but I was completely out of it and don't remember... I guess they have to do that, even if you're not aware of the world around you.<br />
<br />
I don't really know what this means for my endometriosis, as far as staging does, but I'm not sure a label matters. My endo has officially migrated to another organ, which sucks, but I'm hoping my Mirena IUD does what it allegedly can do and slows it own.<br />
<br />
Stages, for those who don't know, don't really mean much as far as symptoms go. You can have stage I endometriosis and experience crippling pain. And you can have stage IV and experience no symptoms at all.<br />
<br />
I was diagnosed with "minimal endometriosis," but in just two years, things have progressed pretty significantly from what I can tell right now. I'll know more during my post-op in late December, but I do know that it took longer to recover from this surgery than my first, making me think they did a lot more work. (I also had an IUD, injections and am fighting an infection I had beforehand, so there's that...)<br />
<br />
I haven't had much time to absorb my surgery. My emotions have been focused on the election results, and they haven't strayed. But I think I'll have more feelings about it, when I take the time to let them come.<br />
<br />
For now, I'm focused on my recovery, which is almost over. I should be okay to drive tomorrow, and I left my house yesterday for the first time.<br />
<br />
I'm ready to face the next chapter of my endometriosis journey.</div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-26193953773511889842016-10-30T23:45:00.000-04:002016-10-31T00:19:22.655-04:00Another Time, Another Place<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-ku_N3RZ9lkA/WBaxYAfXOMI/AAAAAAAAAd0/P--w6U8-XYImkGIl-4vM8_R8QkFtHNXpACLcB/s1600/14705830_10206312956497838_6779486473197395118_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://1.bp.blogspot.com/-ku_N3RZ9lkA/WBaxYAfXOMI/AAAAAAAAAd0/P--w6U8-XYImkGIl-4vM8_R8QkFtHNXpACLcB/s400/14705830_10206312956497838_6779486473197395118_n.jpg" width="400" /></a></div>
<br />
<div style="text-align: justify;">
I was going to wait a few days to write this, but I can't get it out of my head, so I guess I'll write everything out right now.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
So basically, if you're not interested in reading this entire post, I'm going in for my second surgery on Nov. 9 - just a month shy of two years since my first one.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
And I... I'm feeling utterly, hopelessly and devastatingly defeated.</div>
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<br /></div>
<div style="text-align: justify;">
This feeling actually started a few weeks ago on a Tuesday morning. I'd spent the night prior wrapped up in my heating pad and drifting in and out of sleep on the couch. It was that kind of hazy, confused sleep in which you keep trying to wake up, but you're pulled deeper and deeper into chaotic dreams that don't make sense. And you finally shoot awake like you're surfacing for air before drowning.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Or maybe I'm the only one who sleeps like that...</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Anyway, I woke up the next morning surprisingly refreshed. I wasn't in the sickening, dragging pain that I had the day before, so I got ready for the day, made breakfast and started skimming my work emails.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Within an hour, my vision started to go blurry. My ears rang louder and louder. A cold sweat broke over my entire body. <i>What the hell? Am I passing out?</i></div>
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<i><br /></i></div>
<div style="text-align: justify;">
I managed to type out an instant message to my boss through bleary eyes. "I'm passing out. I have to take the day off. I'm fine, probably. Okay, thanks bye!" And I also composed an out-of-office message. And people think chronic illness patients can't do anything...</div>
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<br /></div>
<div style="text-align: justify;">
I collapsed onto my bed and felt a wave of nausea, pain and heat that I hadn't really felt since before I was diagnosed with endometriosis. As my brain continued to wail <i>"What the heeeeelllll???"</i> I fell asleep until 1 p.m. and then woke up to text my very worried boss that I was actually alive.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I hadn't passed out because of my uterus in a long, long time. And it definitely had never happened during work hours. So of course, I was embarrassed. I take pride in not letting my disease affect my work. But whatever happened clearly couldn't have been prevented.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
So I called my ever-elusive ob-gyn's office and pleaded for an earlier appointment than the one we have scheduled for uhh... January. They fit me in, and I just had to hang on and hopefully not pass out until then.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
My appointment was last week Friday, and I decided to take the afternoon off. I had pulled extra hours at an early morning Saturday event and a Monday conference, and I was just ready for the week to be over. There was also that foreboding feeling that my ob-gyn wouldn't have exciting news, so I figured I wouldn't be able to reply to work emails with an answer other than <b>"I DON'T CARE. MY UTERUS IS ON FIRE. GREAT, THANKS. - TRACY"</b></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
But the thing was I actually <i>felt</i> okay that day. After my fainting episode and a rough few days following, my body seemed to get over whatever the hell was bothering it. My energy miraculously came back. My pain levels were low. I think I even told my physical therapist I was at a three on the pain scale when I went to see her.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
But as I sat in my ob-gyn's office and swung my feet back and forth for a half hour, I knew that I couldn't count on that. I can never count on that. In fact, right before my first surgery - the one that would diagnosis me with endometriosis - I remember going, "I've felt fine this whole week. Why am I asking for this surgery?" And then I found out why I demanded it in the first place...</div>
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<br /></div>
<div style="text-align: justify;">
My doctor finally came in, and as usual, any frustration I had toward her for <i>neeeever </i>being available vanished. I mean, this woman is fantastic. She's smart, sympathetic and amiable, and dammit, I can't stay mad at a doctor who knows her shit.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I detailed my symptoms, mostly focusing on the month and a half of non-stop fatigue and pain. She checked me over to confirm that, YEP, Tracy hurts a whole hell of a lot and then furrowed her brow.</div>
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<br /></div>
<div style="text-align: justify;">
"When was your last surgery?"<br />
December 2014.<br />
"Do you think it's time to go back in and clean things up?"<br />
Sure, why not? Sounds fun.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Okay, I wasn't <i>that</i> eager to have a camera stuck in my bellybutton. I asked a few questions about my options, and she said what I thought she would. "Well, there's only so much medicine I can give you before we have to go back in and get rid of what's there."</div>
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<br /></div>
<div style="text-align: justify;">
As much as I thought I'd have to get another surgery in two years, I was really, really, <i>reallyyy</i> hoping I could push it off a little longer. After a fun-filled two months of trying to figure out my fatigue (and, by the way, my prior auth on that medication <u style="font-style: italic; font-weight: bold;">still has not come through yaaay</u>) I wasn't quite thrilled to have to also deal with a laparoscopy and the recovery.</div>
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<br /></div>
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But this time, this ain't your mama's laparoscopy. After my doctor cuts and burns off the visible endometrioma, we're going to check out my bladder because DAMMIT people just won't believe I don't have interstitial cystitis! And then, we're injecting some shit into my pelvic floor muscles so that they calm the eff down! And then, we'll probably throw in an IUD while we're at it because, hey, I don't want to deal with all those painful "awake" procedures if I can do them while I'm dead to the world.</div>
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(Can I just say that I love that my surgery is the day after Election Day? If it doesn't go the way I want, at least I'll be unconscious for a good few hours of the following four years...)</div>
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<br /></div>
<div style="text-align: justify;">
To be honest, getting all of that done at once terrifies me. I mean, my mom recently endured a surgery in which they <i>literally</i> took out her organs and put them back in, but I still fear pushing my body beyond its limits. I already had concerns about recovery from a surgery's second time around, but all of this at once seemed so overwhelming.</div>
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<br /></div>
<div style="text-align: justify;">
My doctor sent me on my way to scheduling, and I figured it'd be a few months until they could get me in. But when I heard "Can you make November 9th work?" my eyes got wide. This was all happening really fast. I just went from absolutely <i>never</i> getting to see my doctor to "Hey, let's cut you open in less than two weeks." I scribbled down the info in my planner, stuttered a thank you and went to sit on a bench for check out.</div>
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As I texted my husband and my mom to tell them the news, I listened to the sounds of nurses cooing over newborns that were being paraded past me. I politely smiled at the proud mothers and then gnawed on my lip as I thought about my surgery.</div>
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Another movement caught my attention, and I lifted my head to see a woman my age walk past with ultrasound pictures in her hands. She had the glowing sheepishness of every soon-to-be mom and breezily followed a nurse down the hall.</div>
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And that's when I broke.</div>
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<br /></div>
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I've never felt the compulsion to be a mom. My maternal instincts begin and end at fuzzy animals. But the procession of women with functioning uteri just gutted me. Here I was, 26 years old and about to go through another surgery that would simultaneously heal and harm my body, further reducing my ability to conceive, further building scar tissue for my nerves to coexist with.</div>
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<br /></div>
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I don't really remember checking out. I remember getting to my car and crying.</div>
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<br /></div>
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It's moments like these when I feel stupid for feeling sorry for myself and when I also want everyone to stop giving a shit about whatever they care about and feel badly for me. I spent the rest of the afternoon in a pattern of bawling, then suddenly becoming chipper again, then sobbing into my husband's shoulder, then making a joke about something irrelevant, and then letting my dog lick tears off of my face.</div>
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<br /></div>
<div style="text-align: justify;">
This mild manic-depressive episode was fairly fleeting, as I had my band's Halloween show to worry about. I broke my surgery news to the guys at practice the next day, and I have to thank them for dealing with my bizarre health issues and the fact that I sometimes suddenly discuss IUDs after concerts.</div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-eaW3P239Ph0/WBa9WAQwjjI/AAAAAAAAAeE/dMwhasw58VIn2F7nsKiNGzprpyFPY9xBwCLcB/s1600/14915236_10206407139692359_8035699318645049578_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://3.bp.blogspot.com/-eaW3P239Ph0/WBa9WAQwjjI/AAAAAAAAAeE/dMwhasw58VIn2F7nsKiNGzprpyFPY9xBwCLcB/s400/14915236_10206407139692359_8035699318645049578_n.jpg" width="221" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My husband's and my "Stranger Things" Halloween costumes</td></tr>
</tbody></table>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
With a very successful show and an offer to play someone's wedding ("YOU WANT TO PAY US?!"), I didn't have much time to cry over my busted organs again. But in a silent afternoon today, I mulled over what lay ahead of me.</div>
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<br /></div>
<div style="text-align: justify;">
I always remind myself to be thankful for difficult medical procedures, and honestly, I am. I have great health insurance. I live in a country where I can get this surgery. But the other half of me is angry that I have to endure it in the first place. Furious that my best treatment is surgery after surgery until I die some day or something.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Just how long will I be able to go before my next one? Another two years? Less? </div>
<div style="text-align: justify;">
Just how much damage will they find when they cut me open?</div>
<div style="text-align: justify;">
Just how much more will I have to sacrifice and suffer for something I didn't ask for?</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
With my surgery coming up much faster than I anticipated, I'm trying my best to stay positive. My goal is to be as physically active as possible over the next week and a half, so that I don't bitch and whine from my couch about how "lazy" and "fat" I'm being throughout recovery. (This is a personal problem I'm still trying to work out...) </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Honestly, I don't want people to feel sorry for me. I want them to see the hurdles and complete roadblocks to effective health care for women and feel angry for me. I want them to help me work toward a day when surgery isn't the "best treatment" for an incurable disease that affects 1 in 10 women - one that so many don't even feel comfortable talking about.</div>
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<br /></div>
<div style="text-align: justify;">
My righteous anger will subside. I recovered quickly from my last surgery and will likely breeze through this one.</div>
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<br /></div>
<div style="text-align: justify;">
But for now, I want to feel the suffocating injustice that I've tried to be chill about lately. I want to be sad and frustrated and defeated and whatever I need to feel.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Because if I don't feel it now, I'll feel it later. And I need that time to overcome.<br />
<br />
<i>Bright morning lights</i><br />
<i>Wipe the sleep from another day's eye</i><br />
<i>Turn away from the wall</i><br />
<i>And there's Nothing at all</i><br />
<i>Being naked and afraid</i><br />
<i>In the open space of my bed</i><br />
<i>- "Another Time, Another Place" - U2</i></div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com2tag:blogger.com,1999:blog-9150378473884064415.post-57565934531997112592016-10-05T21:49:00.001-04:002016-10-05T21:53:20.595-04:00Damn, Girl, You Sleepy<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-OzwAHpvUhEk/V_WmdWcrP1I/AAAAAAAAAc4/tgctrd-H15In9taPvV5tc6G8EsvX-o3RgCLcB/s1600/14124997_10205947013989504_6593581754700761368_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: inherit;"><img border="0" height="360" src="https://4.bp.blogspot.com/-OzwAHpvUhEk/V_WmdWcrP1I/AAAAAAAAAc4/tgctrd-H15In9taPvV5tc6G8EsvX-o3RgCLcB/s640/14124997_10205947013989504_6593581754700761368_o.jpg" width="640" /></span></a></div>
<span style="font-family: inherit;"><span style="font-family: inherit;"><br /></span>
</span><br />
<div style="text-align: justify;">
<span style="font-family: inherit;">So last month was really tough. In addition to some above-normal pain, I spent a lot of September in a kind of fuzzy, not-really-aware zone in which I have to do things to double-check that I'm actually awake. </span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;">It's like Inception.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-9zixxiXGvrY/V_Wm2_enfoI/AAAAAAAAAc8/YGmyL_eHDiI_hKynPDIRbIlBTdf1hifswCLcB/s1600/giphy.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: black; font-family: inherit;"><img border="0" height="166" src="https://2.bp.blogspot.com/-9zixxiXGvrY/V_Wm2_enfoI/AAAAAAAAAc8/YGmyL_eHDiI_hKynPDIRbIlBTdf1hifswCLcB/s400/giphy.gif" width="400" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;">I need one of these.</span></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-jp50-doiDXo/V_WpifQwrtI/AAAAAAAAAdY/0so55iDFUpIF3yRywtuVU49n7hxNjP1fACLcB/s1600/giphy%2B%25282%2529%2B%25281%2529.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: black; font-family: inherit;"><img border="0" height="182" src="https://2.bp.blogspot.com/-jp50-doiDXo/V_WpifQwrtI/AAAAAAAAAdY/0so55iDFUpIF3yRywtuVU49n7hxNjP1fACLcB/s320/giphy%2B%25282%2529%2B%25281%2529.gif" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;">Actual footage of my tantrum</span></td></tr>
</tbody></table>
</div>
<div style="text-align: justify;">
<span style="font-family: inherit;">As you may know, that ongoing sleepiness led me to finally seek help from a specialist. I endured a <a href="http://www.stillsunflowers.com/2016/09/my-very-sleepy-not-so-immune-system.html">miserable sleep study</a> at the end of August, and two weeks later, I got some vague test results that essentially said, "Yeah, you're sleepy, but we're not really sure why..."</span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;">I wouldn't get detailed results for a few more weeks in my follow-up appointment with my doctor. So in the meantime, I struggled through days in which I fell asleep sitting up at my laptop, jerked myself awake from spontaneous naps after work and in which my dog totally gave up on me waking up with my first alarm.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;">If your dog doesn't even have faith in you, I mean, who does, man?</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-uc2wVn57jtY/V_WocfrtpkI/AAAAAAAAAdM/1zo2hQ4VGU0rzwOi9MNNSZHIh4QfNhtAACLcB/s1600/giphy%2B%25281%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: inherit;"><img border="0" height="263" src="https://1.bp.blogspot.com/-uc2wVn57jtY/V_WocfrtpkI/AAAAAAAAAdM/1zo2hQ4VGU0rzwOi9MNNSZHIh4QfNhtAACLcB/s320/giphy%2B%25281%2529.gif" width="320" /></span></a></div>
<div style="text-align: justify;">
<span style="font-family: inherit;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;">I was starting to get impatient. It was clear to me that I was tired because my body was in pain, and my body was in pain because I was tired. There! I diagnosed myself again; now, please give me a treatment plan thx.</span></div>
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<div style="margin: 0px;">
<span style="font-family: inherit;">To add to that, my endometriosis goes in a cycle in which I'm in significant pain and nausea for one week out of the month, and then the following week, I can't eat anything. Okay, I can eat like five things, and they're mostly terrible for me: pizza, cereal, macaroni and cheese, grilled cheese and Jimmy John's (xoxoxo). </span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-kT0KRLA3-Bg/V_Wo71U5uBI/AAAAAAAAAdQ/I0nzqd0ZQ8M6tqBkcPZ69pRcFMUNHCpogCLcB/s1600/giphy%2B%25282%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: inherit;"><img border="0" height="170" src="https://4.bp.blogspot.com/-kT0KRLA3-Bg/V_Wo71U5uBI/AAAAAAAAAdQ/I0nzqd0ZQ8M6tqBkcPZ69pRcFMUNHCpogCLcB/s400/giphy%2B%25282%2529.gif" width="400" /></span></a></div>
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<span style="font-family: inherit;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;">That's about it. Nothing else sounds good, and if you put it in front of me, I immediately lose my appetite.</span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;">This time around, my flare-up week and my eat-only-processed-cheese week were especially rough. So adding that to my inexplicable fatigue, I spent most of September being, as I put it, useless. I could barely concentrate at work, I think I maybe did laundry once, and the two times I tried to work out at the gym failed miserably. (There was, however, one day when I was hit with a sudden burst of energy, cleaned my entire house and then died or something.)</span><br />
<span style="font-family: inherit;"><span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;"><br /></span>
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<span style="font-family: inherit;">All of this culminated into a slightly embarrassing episode in which I was trying to style my hair, as I'm still getting used to not having a pixie cut for the first time in six years. I progressively got more and more frustrated with my thin hair, until I exploded about how I'm always fighting my body, how it never cooperates with me, how everything is terrible, etc. and then I cried. </span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;">My husband, Andrew and our dog, Juno both had to coax me off of my metaphorical cliff, and then I later remembered I hadn't taken my antidepressant that day. Funny how that works...</span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: inherit;">Anyway, despite my melodrama, there was a lot of truth in my tantrum. I hadn't felt in control of my body in a long time, and the fatigue just made me angrier about it.</span><br />
<div>
<span style="font-family: inherit;"><br /></span></div>
<span style="font-family: inherit;">But after my little meltdown, I realized that something had to give. And unfortunately, in this case, it had to be me. I had to stop fighting and take a seat on the bench for a little bit.</span></div>
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<span style="font-family: inherit;"><span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;"><br /></span>
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</span><br />
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<div style="margin: 0px;">
<span style="font-family: inherit;">So I gave in. I stopped forcing myself to feel better. Instead of dragging a tired and sore body to the gym, I scaled back to walks and yoga. (My new favorite YouTube instructor is <a href="https://www.youtube.com/user/yogawithadriene">Yoga with Adriene</a>, fyi.)</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div style="margin: 0px;">
<span style="font-family: inherit;">And I slowly started to feel better. While my energy didn't magically come back, the stress subsided, and that made a major difference. I know endometriosis and stress don't get along, at least in my case, but I tend to forget that and then get further stressed out when I remember...</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div style="margin: 0px;">
<span style="font-family: inherit;">It at least held me over until my appointment with my sleep doctor last Monday. He told me that while I exhibited a lot of the symptoms of narcolepsy, they couldn't officially diagnose me through my sleep study. On average, it took me five minutes to fall asleep during the 20-minute naps they scheduled for me every two hours. (Completely unsurprising to me. I am the queen of naps.) But I never entered a REM cycle - or, in other words, started dreaming - which meant that they couldn't confirm I had narcolepsy.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div style="margin: 0px;">
<span style="font-family: inherit;">They were able to officially rule out sleep apnea and restless leg syndrome, which I already knew I didn't have, and put a penciled-in label on me called "idiopathic hypersomnia." In other words, "Yeah, you super sleepy, but you sleep just fine." It's thought to be a neurological condition, and like all of my other conditions, there's not really a cure.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-FBV97aAFr48/V_WryUtGkBI/AAAAAAAAAdk/zSUQtTFsRG49VxI7DbTt1tw7lMBwkY3SgCLcB/s1600/giphy%2B%25283%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: inherit;"><img border="0" height="179" src="https://1.bp.blogspot.com/-FBV97aAFr48/V_WryUtGkBI/AAAAAAAAAdk/zSUQtTFsRG49VxI7DbTt1tw7lMBwkY3SgCLcB/s400/giphy%2B%25283%2529.gif" width="400" /></span></a></div>
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<span style="font-family: inherit;"><br /></span></div>
<div style="margin: 0px;">
<span style="font-family: inherit;">There is, however, treatment. ...treatment that I have yet to receive because of insurance, but treatment! My doctor prescribed me a stimulant that should help keep me awake throughout the day, and I reluctantly accepted it.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div style="margin: 0px;">
<span style="font-family: inherit;">I say reluctantly because I feel like I'm on a ton of medication. While I'm actually down from where I was a few months ago, I can't help but worry about the long-term consequences of taking multiple pills, every single day, for years and years.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
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<span style="font-family: inherit;">Even my doctor offhandedly said, "You probably don't want to get pregnant while you're on all of this medication." (Yeah, that's not going to happen, friend, but I appreciate the concern...)</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div style="margin: 0px;">
<span style="font-family: inherit;">It really sucks to have another diagnosis handed to me. It sucks to exhaust all of my home remedies and have to surrender to the professionals. And as addiction is so frequently in the media, it sucks a third time to be "one of those people" who pops pills in meetings and whose purse clatters with all her meds.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
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<span style="font-family: inherit;">Anyway, that's a tangent I'll probably get to in another blog post. And one I don't feel like dissecting right now.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
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<span style="font-family: inherit;">For now, I'll see how this treatment goes. I'm hoping I won't have to stay on it forever, but given that fatigue is practically synonymous with chronic pain, and given that I've fought this for years without relief... I'll probably have to be.</span></div>
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Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-47410794412472349192016-09-12T13:29:00.000-04:002016-09-12T13:37:41.855-04:00Endorse Me!Friends, Still Sunflowers has been nominated for the WEGO Health Activist Awards. If you feel so inclined, please click the button below that says "Endorse Me Now." This will help push me toward being a finalist.<br />
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I think you can only endorse me once, and endorsements run through Oct. 21.<br />
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Thank you so much. But I especially thank you for reading my little corner of the internet.
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Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-76347669074795037762016-09-11T21:53:00.001-04:002016-09-11T21:56:02.528-04:00Resilience<div class="separator" style="clear: both; text-align: center;">
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I should be eating dinner or taking care of chores or doing a myriad of other things, but I'm really pissed off, so I can't go on with my life until I write it all down right here.</div>
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So unless you've managed to escape every discussion about the election, you've probably heard candidates' health come into question on both sides of the aisle. And before I get into this, I'm going to try to stay as non-partisan as possible, and no, I'm not telling you who I'm voting for. Because that distracts from what really bothered me about the past few weeks of political news. </div>
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And also, I don't know if either candidate has a serious illness or disability, and I frankly don't care. Which is kind of the point of this blog post.</div>
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As I skimmed through the news and tweets on candidates' health, something really killed me about the language being used to discuss this issue. Something about the way both journalists and your average internet troll questioned the ability of someone to manage themselves with an illness. Something about the way someone said to me, and I quote, "I don't want a diseased retard running this country to the ground."</div>
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In short, it's <b>ableism.</b></div>
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If you're reading this, and you, like me, have endometriosis, I'm sure you've experienced ableism in one way or another. </div>
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"Should you <i>really</i> be lifting that heavy box?" </div>
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"Hi, Tracy's husband. How is Tracy's health, even though Tracy is right here?</div>
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"Maybe you should take a break."</div>
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"It must be really nice to take an hour from work to go to the doctor every week."</div>
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"You shouldn't be doing that if you're sick."</div>
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"You know what, you actually don't <i>look</i> sick to me."</div>
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The list goes on... and if you have a disability, it goes on even longer.</div>
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What it boils down to is <b>an assumption that you understand an ill or disabled person's ability better than they do. </b>And in that assumption is usually the belief that an illness or disability automatically limits you.</div>
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And when that's put on blast at a national scale, it's a very revealing insight to how our society views people with disabilities or illnesses. When words like "incapable," "inept" and "incompetent" are thrown around next to diagnoses from armchair physicians, what does that tell people with health challenges? What does that say to our professors, employers and coworkers who work with us? What signals does that send to people who see the man in the wheelchair, the child with a prosthetic or the woman with an "invisible" illness and don't stop to actually know them?</div>
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<i>We spend our whole lives fighting to be treated like anyone else. And now, of all things, the election is setting us back.</i></div>
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This afternoon, I was talking with an endo sister about how I've recently felt that I've been skating by on sheer luck. That I've been able to recover and press on through my illness, and that my education or work have never suffered because of a disease I've carried for 15+ years. But that it's all luck, and eventually, it'll all catch up to me.</div>
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But it's not luck. <b><i>It's resilience.</i></b></div>
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If there's one thing I've learned by connecting with and talking to people with disabilities and chronic illnesses, it's that they're the most resilient people I've ever met. They're the hardest workers, not only because they "have" to be, but because they <i>want </i>to be. They're the most compassionate and understanding people. They're the first to offer to help. They're problem-solvers, negotiators, ambassadors and forecasters. They're unbelievably patient, see all sides of the issue and, above all, they bounce back faster than anyone from the lowest possible points.</div>
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If I were picking a president, I would want a chronically ill person.</div>
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There are some who wring their hands and pull their hair and screech, "But I don't want a sick person who could die in office!"</div>
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First of all, anyone could die at any point in time ever, so that's a really nonsensical argument. Having an illness or disability doesn't necessarily make you <i>more</i> likely to die than an able-bodied person.</div>
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But secondly, <b>chronically ill and disabled people understand their abilities better than anybody</b>. If there were something I could not do, I would be the first person to admit it, and I'm sure others with endometriosis feel the same. If I couldn't do my job, I would know it before you did. I trust that others know their bodies, too. (And it's my sincere belief that if someone can handle a campaign trail, they sure as hell can handle a political office. But I digress.)</div>
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Yes, there are low points. And yes, I have days when I can't function as well as I'd like. And there are times I have to tap out and take care of myself. (Why is that a bad thing, again?) </div>
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But I've never, <i>ever</i> let that affect my work or education. And I've never given myself excuses. And I've never left a job incomplete. But on a day when one of those critical armchair physicians was in bed with the sniffles, I was managing a couple hundred people at a work event with a heat wrap for pain, a Tramadol and healthy dose of resilience.</div>
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<b>It's not up to you, a person on the sidelines, to decide for people with physical limitations what they're capable of doing. </b>You don't deserve a list of their accomplishments or failures, just because a doctor stuck a label on their body. And no one owes you an explanation for every ache, pain or symptom that their illness produces.</div>
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Did your employer ask for your medical records when you got your job?</div>
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That's what worries me, though. I worry that the more we fuel stuff like this, the more that a person's health will take a spotlight. What if we start pushing out people with illnesses and disabilities from their jobs, simply because of a diagnosis? What if we take away their autonomy completely, and not just kind of, like we seem to be doing? What if we choose for that person where they can live, travel, do and enjoy? Why do the able-bodied get to speak for everyone else?</div>
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Instead of speculating about a person's health when you're not their doctor, why don't you ask yourself why you view people with disabilities and illnesses as inferior to you? What do you know about my life? What do you know about what I can do or can't do? </div>
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Because I'm sure if you filmed me 24/7 like a presidential candidate, you'll see me in pain. You'll see me stumble. And you'll see me struggle once in a while.</div>
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<b><i>But above all, you'll see me overcome.</i></b></div>
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Now if you'll excuse me, I have two-and-a-half miles to run.</div>
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Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-90094068304236236802016-09-07T22:54:00.002-04:002016-09-07T23:39:06.171-04:00My Very Sleepy, Not-So Immune System<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Kylo Rennnn!</td></tr>
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Ladies and gentlemen, let me tell you the story of my life as a sleepy person.</div>
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Sleep and I have always been friends. As a kid, when left to my own devices, I would sleep as late as my body would allow. In high school, I developed two personalities - my normal one and my early morning bitchy make-people-cry personality. </div>
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Endometriosis made me especially appreciate sleep, before I even knew I had this disease. During my period, it was the one and only place I didn't hurt, until a few years ago.</div>
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It's probably not surprising to most people that my sleep cycle went to shambles in college. Like most students, I stayed up very late, usually 1 a.m. or 2 a.m. on school nights and even later on weekends. I slept about five or six hours and spent the rest of the day cramming as much activity as possible into my awake hours.</div>
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But despite all that, I was functional. In my first year out of college, I was still functional. And then, right around the time I knew I was sick but didn't know I had endo, everything came to a screeching halt.</div>
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Sure, I expected my ability to survive on mere hours of rest to finally wear out. But I didn't expect to stumble through the middle of the day like a zombie. I didn't expect to sleep for eight, nine, ten hours and never feel rested. I definitely didn't expect to need a nap every day, fall asleep in social situations or skip out on events because I'm just way. too. tired.</div>
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Chronic pain and fatigue often go hand-in-hand. I knew that, and it makes sense. Your body spends all day fighting itself. So yeah, it's going to be exhausted at the end of the day.</div>
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But eventually, about three years ago, I got to the point where my life went like this: <b>Wake up. Go to work. Come home from work. Nap. Wake up. Eat dinner. Nap. Wake up. Crawl into bed. Sleep. Repeat.</b></div>
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It wasn't a life. It was an existence ruled by pain and fatigue. I hardly had a life outside of it - just a hollowed-out husk, simply surviving.</div>
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Once I was diagnosed with endometriosis, had surgery, got my symptoms mostly under control and made some lifestyle changes, my pain improved and so did my fatigue. I thought I had my life back, and I was thrilled to no longer be ruled by a sleepy body.<br />
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That lasted for just a little while. And then, the pain crept back. And the fatigue.</div>
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And I noticed I needed to nap every day again. And I realized I had trouble remembering things. <b>And I almost crashed my car because I fell asleep at the wheel.</b></div>
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I needed help. But overwhelmed by my other health needs, I put it off as long as I could. Instead, I supercharged my body on long, frequent road trips with caffeine, trail mix, loud music and everything in between. My husband could drive when we went somewhere together, but for my work trips, I was on my own. And I was too proud to call my boss and say, "Hi, I can't come to that event. I'm sleepy."</div>
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That "solution" wore off, too, eventually. Nothing worked anymore. </div>
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And before you ask, "Did you try-?" YES. I tried everything! I woke up early. I woke up late. I went to bed early. I went to bed late. I ate more. I ate less. I worked out more. I worked out less. I drank more caffeine. I drank none (BAD! BOOOO!) </div>
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<b>I. tried. everything. And nothing changed.</b></div>
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I had to admit defeat, so I met up with my primary care practitioner. A blood test showed some slight vitamin deficiencies but nothing that could explain my all-encompassing sleepiness that was draining me in every way possible.</div>
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So she referred me for a sleep study.</div>
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(<b>SPOILER ALERT: </b>This blog post won't tell you the results of my study because I have no idea what they are yet. So if you're on the edge of your seat, anxious to know just how sleepy I am, you'll have to wait for the sequel.)</div>
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(You know. Just didn't want to disappoint you guys.)</div>
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So yeah, I first set up my consultation to determine whether I actually needed a sleep study, which I was pretty skeptical about. But I showed up early, as asked, which I thought was funny because uhh you're dealing with sleepy people.</div>
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If you're considering a sleep study, know this. <b>YOU WILL HAVE MORE PAPERWORK THAN YOU EVER THOUGHT POSSIBLE OH MY GOD.</b></div>
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Don't go and tell me, "But Tracy, I had this one surgery/ER visit, and I had so much stuff to write out." NO. NO YOU DID NOT. YOU DID NOT HAVE SLEEP STUDY PAPERWORK.</div>
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Sleep study paperwork is like "Do you sleepwalk? Do you ever think about sleepwalking? Do you know what sleepwalking is? Have you ever met someone in your life who sleepwalks? If you could sleepwalk right now, where would you go? Seriously, that's it? You'd just go get pizza? Well, okay, I would have figured something more interesting than that, but hey, it's your sleepwalking..."</div>
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And as you fill out these pages, sleep techs will come by and take them out of your hands and bring them to your sleep doctor. And then they'll come back like "Did you fill out the 500 questions about dreams?" And you'll be like "NO, DAMMIT, I'M STILL ON CAT NAPS, GIVE ME A MINUTE, CHERYL."</div>
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Anyway, after my wrist fell off, I was escorted to the doctor's office. He reviewed my mountain of dead trees, and our conversation essentially went:</div>
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"Do you snore?"</div>
No.<br />
"Are you sure?"<br />
Yes.<br />
"...are you really sure?"<br />
YES.<br />
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"Okay. You don't have sleep apnea. Maybe narcolepsy?"</div>
K.<br />
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"You should have a sleep study."</div>
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Great.</div>
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(He was actually more helpful than that, but this story is getting long.)</div>
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If you're not familiar with narcolepsy, it's when your brain can't adequately process sleep-wake cycles. So as a result, you have excessive daytime sleepiness and uncontrollable episodes of falling asleep in the day.</div>
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I chatted with a close friend who has narcolepsy about the condition, completely sure I didn't have it. I mean, I don't have sudden, overwhelming sleep attacks, in which I'm making breakfast and then all of the sudden on the floor. </div>
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But my friend doesn't either. What I learned is that sleep disorders, like narcolepsy, are a spectrum. Some people do have very serious and scary sleep attacks, in which they don't remember falling asleep. Other people, probably like me, are just really, really tired all the time.</div>
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<b>I also learned that narcolepsy is sometimes thought of as an autoimmune disorder, like endometriosis often is. </b>That was a lightbulb moment for me. Once you have one autoimmune disease, you tend to have, like, twenty. So maybe narcolepsy <i>was</i> a reasonable diagnosis, even though I hesitated to clear the sleep medicine office to pass along the sleep study to my insurance company.</div>
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But I was desperate. I was getting more and more tired, and I needed answers.</div>
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So two days before my wedding anniversary, I packed up a random assortment of things I need to be a Tracy into my college backpack and got ready for my sleep study.</div>
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Here is my "first day of school" photo:</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-661O75dYdoU/V9DKDRM29gI/AAAAAAAAAa4/D_U9cLduQKUGeLyxm_rz0eMRoDMmP1KbQCLcB/s1600/14080014_10205995779528612_8402501413951114597_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://4.bp.blogspot.com/-661O75dYdoU/V9DKDRM29gI/AAAAAAAAAa4/D_U9cLduQKUGeLyxm_rz0eMRoDMmP1KbQCLcB/s400/14080014_10205995779528612_8402501413951114597_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Note the sad dog in the window...</td></tr>
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My sleep study would involve sleeping a night at the office and then a narcolepsy study the entire day following. </div>
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I showed up, had an hour or two to myself and then, I was hooked up to a billion sensors and plugs and whatever else you call those things. There were a ton stuck to my head, which meant my hair was full of this sticky, white goop for an entire night, morning and afternoon. There were four on my legs, to monitor kicking, and two on my chest, to monitor my heart. Belts were wrapped around my chest and stomach to track breathing, and the worst were a few stuck to my chin to see what my mouth does while I sleep. I also had tubes up my nose. I was very pretty.</div>
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Perhaps unsurprisingly, I slept terribly that night. I usually do when I'm in hotels or somewhere I don't usually sleep, but I slept <i>really</i> badly. In fact, I'm pretty sure I got four hours of sleep, tops. At 5:30 a.m., the sleep techs who could listen to and see everything I was doing in my windowless room (creeeepy) woke me up.</div>
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Between that and the fact I wasn't wedged between my unmoving log of a sleeping husband and a 15-lb. dog who somehow takes up half the bed, I was already unsure how well this would assess my "normal" sleep. Nothing about that night was normal. </div>
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But this was just the beginning of my study. The next part is what I later described as "a special kind of torture."</div>
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I can't function without my morning routine: breakfast, coffee, shower. If I'm missing one of those things, I'm in disarray - completely uncomfortable, cranky and just unpleasant to be around.</div>
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Guess who didn't get two of those three essential things. Yep.</div>
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<a href="https://2.bp.blogspot.com/-HGEE1U_Z7is/V9DM4h5v83I/AAAAAAAAAbE/KY-aZsxidZYXdBr1A2wG7tU1z61E0N7lgCLcB/s1600/giphy%2B%25285%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="220" src="https://2.bp.blogspot.com/-HGEE1U_Z7is/V9DM4h5v83I/AAAAAAAAAbE/KY-aZsxidZYXdBr1A2wG7tU1z61E0N7lgCLcB/s320/giphy%2B%25285%2529.gif" width="320" /></a></div>
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I figured I wouldn't get coffee, since that's pretty much cheating on your sleep study. But I couldn't shower, and I had goop all over my face and hair that kept the sensors attached to me. I could feel my face breaking out underneath layers of that stuff. I wanted to pull out the hair that was sticking to every part of my face and tangling with wires in every direction. Just thinking about this still makes me cringe. Why didn't I wait to grow out my pixie cut?! How did I survive three days of Bonnaroo?!</div>
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Anyway.<br />
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To assess narcolepsy, I had to take 15-20 minute naps every two hours. In those two hours, I could <b><i><u>not</u> </i></b>fall asleep, or my goopy hair would be for naught. So I sat in an uncomfortable chair and tried to read Harry Potter, but that quickly made me drowsy. I pulled out my journal and started to write, until my penmanship looked like my American History 101 notes from falling-asleep-in-class Tracy.</div>
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I was reduced to watching the tiny TV in my room. And guys. Don't cry for me, because it already happened. But there was <b>NO </b>HGTV or Food Network.</div>
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<a href="https://4.bp.blogspot.com/-CYiZ6bSWa2s/V9DOoYPyrdI/AAAAAAAAAbQ/R6JaIiOLD0U5uklDVphZTlQXcz5Do6B9gCLcB/s1600/giphy%2B%25286%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="181" src="https://4.bp.blogspot.com/-CYiZ6bSWa2s/V9DOoYPyrdI/AAAAAAAAAbQ/R6JaIiOLD0U5uklDVphZTlQXcz5Do6B9gCLcB/s320/giphy%2B%25286%2529.gif" width="320" /></a></div>
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I had about ten channels to choose from, all of them with the worst of morning TV. Like, worse than what I remember watching on my rare sick days from school. The best thing I watched all morning was Arthur (awww yeah) and in between whatever Good Morning America or Dr. Phil were going on about, I played on my phone and whined about how terrible sleep study life is. I couldn't call anyone because the sleep techs would hear my entire phone conversation, so I let Twitter hear my complaints.</div>
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As far as the sporadic torture naps went, I fell asleep in (I think) half of them. Maybe less. Definitely the first two. I know that being able to fall asleep at the drop of hat, which I've always bragged about being able to do, is a narcolepsy symptom. But it depends on whether or not your body enters REM sleep, which I'm not entirely sure I did.</div>
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At 1 p.m., I got Jimmy Johns. This is important to mention because I love JJ's.</div>
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This nap cycle went on until about 4 or 5 p.m. when the sleep study finally concluded. I was so desperate to be clean that as soon as all the sensors were untangled from my hair and body, I jumped into the tiny shower in my room with terrible water pressure and managed to bathe myself. I thanked my sleep techs and practically pranced out the door with joy.</div>
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My head had been pounding since 2 p.m. from lack of coffee. I only drink one cup a day, but as I said, it's my life fluid, and I don't understand people (i.e. my husband) who can live without it. And thank God Starbucks was across the street because I probably would have caused a state of emergency for my city, trying to get to the nearest source of caffeine.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-Ou3dRTFUftw/V9DQfsqYyUI/AAAAAAAAAbc/xPTj41K5u54f5czbte_GEC2q9cpPc0qBgCLcB/s1600/14021670_10206001714436981_3343047307231247412_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://3.bp.blogspot.com/-Ou3dRTFUftw/V9DQfsqYyUI/AAAAAAAAAbc/xPTj41K5u54f5czbte_GEC2q9cpPc0qBgCLcB/s400/14021670_10206001714436981_3343047307231247412_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Yes, girl, you deserve me."</td></tr>
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You'd think that taking a day off and spending the entire time sleeping would be a great experience, but NO. IT'S NOT. I HAD THIS DREAM AND I'M HERE TO SAY GET A NEW DREAM.</div>
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It's hard to say right now whether or not this bizarre episode in my health history was worth it, since I don't have my test results. But whatever they say, I'm happy to have at least eliminated a few things. While I'm still not sure I have a sleep disorder (maybe just chronic fatigue), I can at least move on to the next chapter of getting myself the help I need.</div>
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This is certainly the "dumbest" thing that's ever happened to my health (and I was run over by a car I was already in once... great story for another time.) I feel kind of stupid being like "What's wrong with me? Oh, I'm juss sleepy sometimes, that's all..." </div>
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But I know this is related to my pain and affects my overall health. And I know it's just yet another thing to add to my unending list of health-related issues and obligations. It's frustrating because sleep has always been a refuge to me. And now that I hurt while I sleep and can't even sleep <i>properly</i>, it's been a tough thing to deal with.<br />
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It's like "Oh, okay. I can't even have that one thing that my body was doing right. THANKS."</div>
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So I will hopefully have the results soon. And I will update with a much shorter blog post.</div>
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<b>If you have endo or a similar condition and a sleep disorder, I would LOVE to talk to you about it. Please comment here or on <a href="http://www.facebook.com/sunflowers.still">my Facebook page</a>.</b></div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-7525729096322590292016-08-24T19:18:00.001-04:002016-08-24T19:25:32.299-04:00Survival<div class="separator" style="clear: both; text-align: center;">
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I wanted to write this for a few reasons. The first and most important one is for you, the woman with endometriosis or maybe another painful illness who doesn't want to keep fighting anymore. Who has grown tired of being tired. Who is worn from yet another day of waking up completely in pain.</div>
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But it's also for me. Because even though I don't feel that way right now, and even though I have faith in my ability to fight, and even though I still find joy in my life, every single person with this disease has wanted to, at one point or another, give up completely. And when I ultimately feel that way again - and I will - I want to remember how I felt before.</div>
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If chronic pain hasn't made you want to give up on your life, I don't think you're being honest with yourself.</div>
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The reason I chose to write this today is because this week, I've heard more than one woman say she's wanted to end her life over her endometriosis. It's definitely not the first time I've heard this. I've read heartbreaking stories of women who have committed suicide because of endometriosis, and I can't judge or fault them for wanting a way out of their pain.</div>
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I'm sometimes asked how I manage to stay positive despite my illness, which makes me laugh a little because I don't consider myself a particularly optimistic person. In fact, if you asked me to be honest about my own outlook with endometriosis, it's a little bleak. I expect to feel worse, as the disease progresses.</div>
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So what do you do when your disease gets the best of you, when all you can do is survive? How do you wake up every morning? How do you find the desire to keep going?</div>
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Here are a few things that have helped me. They might not be realities for you, but I hope something I say helps you.</div>
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<b>Changing the demands I put on myself.</b></div>
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Of all the things I've had to accept with endometriosis (and I'm still learning), this has been the hardest. I'm a pretty ambitious person who likes to challenge herself, and there are times when my brain is ahead of my body. And as a young person, it's been difficult to not compare myself to other twenty-somethings who are traveling the world, running marathons, taking on non-traditional jobs and doing other things that I always thought I'd be doing right now.</div>
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But I started to understand that these expectations were only ones that <i>I</i> was putting on myself. No one else was asking me to be something I'm not. So I stopped trying to be.</div>
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I've found other means of self-fulfillment through music, my job, writing and advocacy. I've been more gentle with myself and focused on the things I <i>can</i> do, not the things I can't. I've celebrated my tiny victories - like waking up right when the alarm goes off or making a new recipe - so that I can work toward bigger victories.</div>
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I don't expect less out of myself. And I don't make excuses. But I refuse to spend my time wishing I could do things that I can't when there is so much I still can do.</div>
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<b>Adapting my environment to work with me.</b></div>
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I've been blessed with a job I love that lets me work from home. This has helped me better cope with the pain and fatigue that limits my body, which have forced many women with endometriosis to quit their jobs to get at least some of their lives back. I know that working from home isn't a reality for a lot of women. But even outside of work, I've made efforts to make sure my environment is working with me, not against me.</div>
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I mentioned the <a href="http://www.stillsunflowers.com/2016/07/learning-to-stand-again.html">bar chair</a> I bought to help me cook and clean when endo pain makes it difficult to stand. I've also stockpiled things that comfort me and make me feel better on bad pain days, like blankets, pillows, socks and pajama pants. Oh, and <a href="http://www.stillsunflowers.com/2016/07/finding-joy-in-caring-for-yourself.html">cinnamon coffee and bath products</a>.</div>
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But it's not just about objects or things that you can buy at a store. I've also made a point to get better at telling the people who love me what I need and how they can help. Before my illness, and still sometimes, I had trouble asking people to do things for me or get me something that I need. But I've found that most people <i>want</i> to help you. They <i>want</i> to love you and care for you and be there for you. </div>
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<a href="http://www.stillsunflowers.com/2015/10/love-is-asking-for-help.html">So let them</a>. And don't force them to read your mind and figure it out on their own. Tell them how they can help and specific things they can do, right now, to make your life easier. Maybe it's a night in with a movie instead of a night out downtown. Maybe it's putting off a phone call another day. Whatever it is, show you love the people in your life by letting them love you.</div>
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<b>Reclaiming my body through self-expression.</b></div>
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This has been a big thing for me lately. I've always valued self-expression, but since being diagnosed with endometriosis, it's been even more important.</div>
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When you feel like you're being rejected by your own body, <a href="http://www.stillsunflowers.com/2016/06/the-skin-im-in.html">it's hard to feel like you have ownership over it</a>. And when so many standards and "rules" are imposed on us as women, it's even harder to feel like you have any say in what happens to your body at all.</div>
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In January, I decided I wanted a tattoo. (Hang on, Mom. I know you're reading this.) I haven't gotten it yet, but I know I want it. My anti-tattoo husband didn't quite understand its importance and why I felt so adamant about it. I didn't really either, and then it suddenly dawned on me one night.</div>
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"You know what?" I said. "I think it's so important to me because I want to reclaim my body. I want to do something, just because I want to do it. I want to prove that this body is mine."</div>
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Maybe your form of self-expression won't be as extreme as mine. Maybe you want to dye your hair the color you always wanted, or wear an outfit without worrying if others like it, or something else completely different. Or maybe, like me, you want to keep <a href="http://www.stillsunflowers.com/2015/12/fitspiration-for-chronically-ill.html">going to the gym</a> on your good days, even though the bad days might soon be ahead.</div>
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Or maybe self-expression for you has nothing to do with your body. Maybe it's writing and music, which I spend time doing. Whatever it is, I encourage you to find a way to reclaim your identity - the one you had before "endometriosis" was even a word in your vocabulary,</div>
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<b>Finding joy in the journey.</b></div>
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This is almost an impossible task, especially when you're feeling miserable. How do you find joy when your whole body feels like it's falling apart?</div>
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For me, it's been some of the things I've already mentioned. In other ways, it's been this blog. There have been many times I've wanted to give up writing here because I felt I was rambling into the internet void or that what I was doing didn't have an impact. But every time I feel that way, someone sends me a message to say they love my blog or they read my story on another website. And that encourages me and brings me joy.</div>
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I've found purpose and joy through endometriosis by telling my story, advocating for others with my illness and sharing why women's health is so important. My illness gave me something to work toward and another way to help people. And through that, I have value.</div>
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At the same time, I've found joy in the simple knowledge that better days, truly and honestly, are ahead. There is so much music left to discover. There are so many places to explore that I haven't seen. There are experiences to share with my husband, cute dogs to be a dog-mom to, goals to achieve that I don't even have yet... There is so much left to be done that only I can do.</div>
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<b>Letting people carry my burden with me.</b></div>
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I talked about this a little bit earlier, but more specifically, I encourage you to be an endo sister to another woman with endometriosis. Chronic illness is already alienating and lonely enough on its own. When you're constantly fighting to be heard by doctors and insurance companies and everything in between, it's so valuable to simply have someone who gets it.</div>
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When I was first diagnosed with endometriosis, I immediately sought out a community. I don't think I'd feel nearly as confident and assured as I do now without these women. I don't have to explain myself. I don't have to apologize for symptoms I can't control. I don't feel the need to be anything except myself. And when you feel the need to make others around you feel comfortable about your disease, it's a relief to have a place where that's not necessary.</div>
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I know that there will always low points. There will be times I want to crawl into a hole and never come out again. There will be moments of anger, anxiety, despair and depression. I will run a gamut of emotions I didn't know I could feel, all because of endometriosis.</div>
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But I find comfort in the sun rises that tell me nothing is permanent. I find grace in a husband, family, friends and coworkers who love me. And I refuse to let endometriosis take away more than it already has.</div>
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And even if you don't have faith in yourself, please know that I do. Because I know women with endometriosis have incredible strength and are capable of amazing things. And as an endo sister, you are, too. And your fellow endo sisters will fight and support you, every step of the way.</div>
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You deserve that love. You deserve tomorrows. And the world deserves you.</div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-81034673627231281572016-08-16T16:03:00.004-04:002016-08-16T16:04:47.953-04:00Fatigue and the Fear of Being Found Out<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-wP3iW9jT8eA/V7Nfy9cbXtI/AAAAAAAAAYg/jFs_EdyeuKQZqZD7GF5zUR8wLSpL1Xb6QCLcB/s1600/pexels-photo-129062-large.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="426" src="https://3.bp.blogspot.com/-wP3iW9jT8eA/V7Nfy9cbXtI/AAAAAAAAAYg/jFs_EdyeuKQZqZD7GF5zUR8wLSpL1Xb6QCLcB/s640/pexels-photo-129062-large.jpeg" width="640" /></a></div>
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Oh, look! Is Tracy writing another blog post about being tired?</div>
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Yes. Yes I am. But I promise there's more to this one than the fact that I'm so bone-achingly exhausted lately.<br />
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This week, I decided to begin a whirlwind adventure with the health care system by posing the question: "HEY, DOCTORS. Why am I so unceasingly tired, and how are you going to fix it?"<br />
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My expectation of my care:<br />
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<a href="https://4.bp.blogspot.com/-o7TbivyKyEU/V7NhWuI6ZkI/AAAAAAAAAYo/_cTCsFrhpgMvbRkcVbd01Gz5RcM7BzazQCLcB/s1600/giphy.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="215" src="https://4.bp.blogspot.com/-o7TbivyKyEU/V7NhWuI6ZkI/AAAAAAAAAYo/_cTCsFrhpgMvbRkcVbd01Gz5RcM7BzazQCLcB/s400/giphy.gif" width="400" /></a></div>
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My reality is, well, not that. At least not yet! It's still early, so there's still time to beat a diagnosis out of me.</div>
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I started by attempting to meet with my ob/gyn. My first appointment was about two months ago or so, and I used my valuable lunch break to sit in a waiting room. I always try to be incredibly patient with doctors because I know I'm not their only patient and I'm definitely not their only patient with a chronic illness. (Hold up. Patient... patient? I GET IT.) But after sitting in an uncomfortable chair and listening to the worst soft rock imaginable for quite some time, I started to get a little restless.</div>
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Before I could get up and try to reschedule, one of the nurses came over to tell me that my ob/gyn was, at that moment, delivering a baby. UGH. BABIES. Ruining everything again! </div>
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Of course, I didn't put up a fuss because, I mean, you can't tell that baby to hang on for a few minutes while I complain about my uterus making me sleepy. Instead, I met with another nurse to reschedule and try again, oh, maybe next week.</div>
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"So she can see you next month at 8 a.m. And that's it. Until the next month."</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-mztMdKBRHbo/V7NkfoJAjjI/AAAAAAAAAY0/AfsKJ6uFjnYmZM5aIqpT2JuxqosNJ-8OwCEw/s1600/giphy%2B%25281%2529.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="215" src="https://2.bp.blogspot.com/-mztMdKBRHbo/V7NkfoJAjjI/AAAAAAAAAY0/AfsKJ6uFjnYmZM5aIqpT2JuxqosNJ-8OwCEw/s400/giphy%2B%25281%2529.gif" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Haha! Good one! No."</td></tr>
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Yeah, uhhh there were at least three reasons that wasn't going to work for me. Which leads me to wonder if anyone out there is <i>just</i> a gynecologist and not dealing with babies on the side, too. If such a rare creature exists, they're apparently not in my insurance network...</div>
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Anyway, I decided that another doctor could carry the diagnosis torch, so I called up my primary care doctor. Who, by the way, is a doll and a big departure from my previous PCP who was 1) convinced I had an infection I didn't have, 2) made me get my urine tested every. single. time. I visited her, and 3) was alarmed every time my vitals ever so slightly shifted. </div>
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My current PCP got me in pretty quickly and asked about my fatigue symptoms. Here is an overview, in case you missed my prior rantings on this topic.:</div>
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<ul>
<li>I've been tired for a really long time.</li>
<li>I can literally sleep anywhere, at any time, all the time.</li>
<li>I can't drive more than like a half hour to an hour without falling asleep.</li>
<li>I'm pretty sure I'm going to die because of the previous symptom.</li>
<li>I wake up in pain all over my body, and it's hard for me to even get out of bed.</li>
<li>I nap at least once a day because I can't function otherwise.</li>
<li>I can't remember anything, and my memory is usually a <i>steel trap!</i></li>
<li>I don't feel rested after a full night's sleep, and it makes no difference if I wake up later/go to bed earlier, etc.</li>
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Most of these symptoms aren't new. Even before I knew I had endometriosis, I had trouble with staying awake. But in the last few months, these symptoms have worsened to a point where I finally said, "Okay. There <i>has</i> to be a way to fix this."</div>
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The biggest point of concern is the driving thing. I travel out of state pretty frequently and often by myself. I can usually stay awake if I have someone to talk to while I drive, but that's not always a possibility. And really, I shouldn't be falling asleep at the wheel, so...</div>
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<tr><td class="tr-caption" style="text-align: center;">This could be us, but a frog playing a banjo still wouldn't keep me awake.</td></tr>
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Anyway, I was pretty convinced I had a thyroid issue or a vitamin insufficiency, the latter likely due to being vegetarian. (Oh-so noble, yet oh-so occasionally vitamin-deficient.) And a quick blood test said, "Eh, sort of. Not really."</div>
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No, my thyroid-hormone levels were fine. I could use a little more iron and vitamin D, yeah... But none of this was severe enough to explain why I was so exhausted.</div>
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And so, my PCP passed on the diagnosis torch to the second runner-up...</div>
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(I don't know what they're really called. So he will now be called Sleep Doctor.)</div>
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PSA: If you ever schedule a consultation for a sleep study, get there as early as possible. Like, pack a lunch. Reroute your mail to the doctor's office. Sell your house. You will have so. much. paperwork. beyond anything you've ever experienced. You are not prepared. You have no idea.</div>
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After I crawled from the mound of dead tree, Sleep Doctor called me in to hear a replay of my symptoms. He gave me a look that I now know as the "Pffft I don't know, but let's try this" face.</div>
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"Maybe you have narcolepsy."</div>
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(gif of me shrugging, throwing my hands out to the side and saying "Sure.")</div>
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To be honest, I'm not convinced. A good friend of mine has narcolepsy. If you're not familiar with it, basically, it means your brain can't process your sleep cycles normally. People with this condition experience excessive daytime tiredness and then sudden attacks of sleep they can't control. Sure, I have that. But I don't really have the night insomnia, sudden loss of muscle function or hallucinations that come with it.</div>
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Some people also think narcolepsy is an autoimmune disorder, which would make perfect since with endometriosis, given that you're at a higher risk for autoimmune disorders. And once you have one, you have like five.</div>
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But Sleep Doctor, who would like to diagnosis me with a sleep disorder, ordered me a sleep study. I'm currently waiting to hear back from my insurance company to find out if they'll cover this and how much it will cost to find out if this is my true self:</div>
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-IycE0Rpb_I4/V7NravAfN2I/AAAAAAAAAZU/OKLsdPvkzekeBHqJxeGiwi4f-T2d_STCQCLcB/s1600/giphy%2B%25284%2529.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-IycE0Rpb_I4/V7NravAfN2I/AAAAAAAAAZU/OKLsdPvkzekeBHqJxeGiwi4f-T2d_STCQCLcB/s400/giphy%2B%25284%2529.gif" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"I'm awaaaaaake! I'm not awake."</td></tr>
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***</div>
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This leads to part two of my blog post: my fear of being "found out." I've tied it to this episode because <b>I can no longer hide the fact that my illness is affecting my daily life.</b></div>
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Up until now, I've done a fairly good job of saving my painful flare-ups and endless symptoms for my home, my close friends and this blog. But as I begin to skip out on more and more social events, and as I schedule more doctor appointments, and now that I've had a conversation that went, "I cannot drive that far. I'm afraid I will die." there's no denying that my illness <i>really is</i> in it for the long-haul.</div>
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I knew that. At least, I was told that. But the more my body makes it agonizingly clear that it's not going to play nice, <b>the more I'm terrified that people will "find me out."</b></div>
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What do I mean by that?</div>
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One thing I frequently hear that both comforts and makes me laugh is that I'm very "optimistic" and "brave" in the face of my condition. Although I know these people mean the best, I sometimes wonder if what they're really saying is "Wow, you manage to be <i>so normal</i>, despite the face that you have a chronic pain condition."</div>
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My ability to adapt and hide my illness gets me gold stars and nice words that not everyone with a chronic illness or a disability gets. The fact that I can get myself together enough to stay out late with my friends most of the time means that I'm doing something right with my condition.</div>
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But when everyone finds out that, oh shit, Tracy really <i>is</i> sick, then what? What will I lose? Who will I lose? That's what my fear of being "found out" is.</div>
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And what really messes with me is that these symptoms and my feelings are so inconsistent. When I can muster up enough energy and strength to make it to the gym or when I celebrate exercise as a way to manage my condition, I feel like a fraud. When I go days without leaving my house or when I choose sleep over the treadmill, I feel like a liar.</div>
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I know that both existences are my reality. But will other people understand that?</div>
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It's easy to tell me not to worry about what other people think. But it's honestly impossible, no matter how much you try to tell me that you don't care about others' opinions. I do care.</div>
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What I worry most about being "found out" is that people won't get the whole story. I'm not incapable of doing things. It's just going to take me another route to get it done. But I <i>will</i> get it done, perfectly and on time! I just may need to have you take the steering wheel, or I may have to sit in a chair while I cook dinner, or I may have to work from home. But I'm entirely, 100 percent capable.</div>
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It's a fear that I think everyone with a chronic illness faces. And it's one that grows every time I have to chase a diagnosis or dig around for a new treatment.<b> And I'm so incredibly grateful for the supportive family members and friends and coworkers who have helped and understood me, every step of my disease.</b></div>
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But I'm always, always going to have this fear.</div>
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Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-55759452820148558882016-08-11T12:00:00.002-04:002016-08-11T12:25:12.591-04:00The Tired You Can't Shake<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-cfePqALpi6k/V6yY7lWLyiI/AAAAAAAAAXw/-wGnHtdMiTwNOSVKNurIvAoKrA_NgrI_QCLcB/s1600/pexels-photo-27335.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="425" src="https://1.bp.blogspot.com/-cfePqALpi6k/V6yY7lWLyiI/AAAAAAAAAXw/-wGnHtdMiTwNOSVKNurIvAoKrA_NgrI_QCLcB/s640/pexels-photo-27335.jpg" width="640"></a></div>
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So this post is slightly off-topic, in that it mostly has to do with the fact I'm back in mental health counseling for what I suspect is post-traumatic stress disorder (or, at the very least, trauma.) But I wanted to talk about it here because I feel like physical health and mental health go hand-in-hand. Well, I <i>know</i> it does. I have a lot of experience in both of these areas.</div>
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Anyway, I came to the realization I needed to go back to therapy a few weeks ago. I'd been thinking about it for a while, but given that I'm a generally happy person and didn't feel as though I was being sucked into a soul-crushing abyss like I did when I had depression, I thought I didn't need it.</div>
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But around this time last year, I started having nightmares. An event came up in my life when I would be forced to see my abusive ex-boyfriend (easiest way to explain our complicated relationship), and he made a few attempts to contact me. And although I considered myself "over" the situation as much as one could be, and even though the event came and went without incident, the nightmares lingered, hovering over me all day and prodding me with guilty feelings and self-doubt. The particularly elaborate nightmares would also tie in an incident of harassment I experienced in college - a situation I never really came to terms with.</div>
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I have particularly vivid dreams, so in coming out of them, it would take a while to get my bearings. I thought I was still in my college dorm and that I'd be forced to face these people again. But I'd roll into my sleeping husband and nudge our dog at my feet and remember. "I'm 26 years old. I'm married. I graduated college four years ago. I have a job. I'm fine."</div>
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You'd think that would be enough to calm my nerves, but unfortunately, it really wasn't. The nightmares always filled me with a mix of emotions - the same ones I felt when these situations were happening to me. And as much as I tried to push these thoughts away, they'd stay.</div>
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I tried to keep this inside and downplay it as much as possible. Until one night, I burst into tears and told Andrew that I was too afraid to go to sleep. </div>
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With chronic pain and endometriosis, sleep has always been one of my few respites. Even before I knew what was wrong with me and crippling, blistering pain would shake my entire body, I could always find peace in sleep. Now, I woke up in pain and in distress. My fitful sleep was probably contributing to my worsening fatigue, which I'm currently undergoing tests to solve. (I'm pessimistic about my treatment options.)</div>
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Even still, I didn't think I needed therapy. For god's sake, these incidents happen six to eight years ago. I'm an adult. I'm married to a man I love. None of this should matter anymore, and yet, it did.</div>
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I think that I thought "growing up," and getting a job, and finding a husband would make everything that hurt me go away. Rather than learning to confront my feelings of abandonment, betrayal, self-doubt and everything in between, I simply buried them under introspective essays and lots of music. I confused my willingness to talk about the abuse I endured as coming to terms with what had happened. But as soon as I had to look my abuser in the eye or hear his name pass my friends' lips, my mind just completely shut down. And I returned to that place where every "what if" and "why didn't you" and "how could you, Tracy" swam around me.</div>
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As I continue to battle physical fatigue that fluctuates from "pretty bad" to "I'm not leaving my house today," my mental fatigue deserves its own treatment. I realized that I could never fully fight my physical symptoms, if my mind wasn't even at a place to do it. Regardless of how happy I am or how little I think about these incidents on a daily basis, the fact is that they're still there.</div>
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Even when I walked into my therapist's office, I felt stupid. I wasn't a college student anymore, and my doubt about my emotional maturity and ability to cope with life crept up. But I know in my heart that I should never doubt those aspects of myself. I know who I am. And honestly, it's a sign of "being a damn adult" that I booked a therapy appointment to begin with.</div>
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It's always been easy for me to admit to a doctor that I don't know what I'm doing and need help. But even though this is my third time talking with a therapist, I still had trouble finally throwing up my hands and passing the torch to someone who knows what they're doing. I even said to my therapist, "I'll do whatever you think is best. You're the professional."</div>
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So I guess I wanted to say all this because I know mental health is a tough thing to talk about. Even in writing this, I'm like, "Should I really publish this?" But why? If I'm so open talking about my physical health, why not my mental health?</div>
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And I know that conditions like endometriosis come with their own emotional burdens. And maybe my therapist will want to talk to me about those things I carry. </div>
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And I hope you know it's okay to admit that you feel defeated or sad or tired or worn to pieces by your disease. It doesn't make you less of a fighter. It doesn't invalidate all the times people told you that you're "inspiring" or "brave." You still are. And nothing can take that from you.</div>
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I'm still happy. I'm still competent. I'm still in love with my husband. I'm still a capable adult. I just have one more responsibility to manage.</div>
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Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com1tag:blogger.com,1999:blog-9150378473884064415.post-5749042189442043932016-07-28T10:02:00.000-04:002016-07-28T10:09:56.743-04:0026 Going on 66<div class="separator" style="clear: both; text-align: center;">
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The day after my 26th birthday last week, I woke up and my back ever-so briefly locked up. Like I do with any new symptom, I sharply inhaled, froze and assessed the situation. But as soon as I noticed the pain, it disappeared, and I heaved a sigh and laughed at my brief panic.</div>
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Also like any funny little moment in my life, I told Facebook, teasing that it was "all downhill" from 26 years old. A few friends chimed in with comments like "You're still young" or "You're a baby."</div>
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As much as that may be true, most days, I don't quite feel 26. My husband jokingly put it like this the other day: "You may be 26 years old, but your body is a member of AARP."</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-1d_rTfaTQic/V5oKnSXESVI/AAAAAAAAAXM/2eCQbu3ExB4-kwk2pJDntVz5d1R0uEg5QCLcB/s1600/giphy.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://1.bp.blogspot.com/-1d_rTfaTQic/V5oKnSXESVI/AAAAAAAAAXM/2eCQbu3ExB4-kwk2pJDntVz5d1R0uEg5QCLcB/s320/giphy.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It's not too late to buy me this for my birthday.</td></tr>
</tbody></table>
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That's the funny thing about chronic pain conditions like endometriosis. On some days, I can do what I'm doing in the picture at the top of this post: climbing up rocks, walking around in the heat and enjoying my life the way it's meant to be lived in my 20's.</div>
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Other days, I have to <a href="http://www.stillsunflowers.com/2016/07/learning-to-stand-again.html">sit in a chair to make dinner</a> and take breaks in between loads of laundry.</div>
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Even other days, it's hard to stay awake for two consecutive hours. Or move. Or simply exist.</div>
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Again, this lends to the "invisibility" of invisible illnesses. I'm sure I've had acquaintances scroll through my social media posts, wondering how I could be in so much pain but still manage to do x, y and z. </div>
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The fact of the matter is that I <i>don't</i> live a day without at least some pain. I don't wake up with energy, and it's a rare day that I skip a nap. (Whether I mean to or not. I can literally sleep anywhere at any time.)</div>
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But for the most part, after more than 10 years of enduring this disease - the vast majority of it spent not knowing what was wrong - I've taught myself to be a person.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-BQlDHBg1fq0/V5oLJD858rI/AAAAAAAAAXQ/IT_WIf_QdWg3706oTUyiCI4B-pgfatnBgCLcB/s1600/giphy%2B%25281%2529.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="174" src="https://4.bp.blogspot.com/-BQlDHBg1fq0/V5oLJD858rI/AAAAAAAAAXQ/IT_WIf_QdWg3706oTUyiCI4B-pgfatnBgCLcB/s320/giphy%2B%25281%2529.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thanks, bro.</td></tr>
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There's a great song by Ben Folds that's always connected with me called <a href="https://www.youtube.com/watch?v=yF_doTsG4t0">"Learn to Live with What You Are."</a></div>
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<i>I'm not saying the effort is a waste of time - but I </i></blockquote>
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<i>Just love you for the things you couldn't change</i></blockquote>
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<i>Though you've tried</i></blockquote>
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<i>These hours of confusion they will soon expire</i></blockquote>
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<i>Like everything</i></blockquote>
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<i>Does</i></blockquote>
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<i>There's never gonna be a moment of truth for you</i></blockquote>
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<i>While the world is watching</i></blockquote>
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<i>All you need is the thing you've forgotten</i></blockquote>
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<i>And that's to learn to live with what you are</i></blockquote>
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The most challenging part of endometriosis hasn't been anything physical. It's been learning to accept that it's part of who I am now, and I'll never escape it. I have to live with it.</div>
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A lot of people talk about not allowing a disease or disability to "define" you. And that's a great thing. I don't want to limit myself before I try something because my body might choose to be a total asshat. (That's the best word I could think of to describe it, to be honest.)</div>
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But at the same time, I don't want to do myself a disservice by not recognizing that yes, I do have limits, and yes, everyone does, and no, I'm not a sham of a feelgood, carpe diem millennial<span style="background-color: white; color: #545454; font-family: "arial" , sans-serif; font-size: x-small; line-height: 18.2px;">™,</span> just because I don't have it in me to travel everywhere, remain in constant motion or commit to 90 different things like I used to force myself to do. </div>
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At 26 years old, it's time to do the big, scary, adult thing and accept myself - no matter how I may physically or mentally feel that day.<br />
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As I'm sure I've said before, I'm always going to struggle with this. On most days, my body can't keep up with my mind and everything that I want to do but just can't. And I hate to say "I can't," as I've always been the type of person who wants to keep trying until she gets the hang of it. (Unless it's golf or drawing a picture of literally anything, then no, sorry, I tried.)<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-KF7RUCZCkC0/V5oONZiKB0I/AAAAAAAAAXg/SFE6i9DQ77wweiLCyhn5wu34gS1wHfb1QCLcB/s1600/giphy%2B%25283%2529.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://2.bp.blogspot.com/-KF7RUCZCkC0/V5oONZiKB0I/AAAAAAAAAXg/SFE6i9DQ77wweiLCyhn5wu34gS1wHfb1QCLcB/s1600/giphy%2B%25283%2529.gif" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">it me.</td></tr>
</tbody></table>
But "can't" isn't always a bad word. To me, it means, "This is great, but I have only so much energy, and I need to use it on other things that are more a) important, b) fulfilling or c) needed." It's not that I don't want to or am not interested or anything else. It's just... I can't,<br />
<br />
So maybe I am internally 66 years old. I mean, I do enjoy things like naps and being warm, and I recently got way too excited about the planner I bought. But I don't think I'm ashamed of that anymore (at least today). As long as I'm happy and living a life in which I find joy and fulfillment, which I do, then I'm who I am supposed to be.Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-46504061333323584042016-07-14T10:54:00.000-04:002016-07-14T10:55:11.546-04:00Learning to Stand Again<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Yo4gRIW63gE/V4efOpGgiCI/AAAAAAAAAWI/9Fo0Tzvi0xEYwJ7YAIfq1L_xnMqv7-nigCLcB/s1600/13626379_10205685366288475_1568563353091982681_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://1.bp.blogspot.com/-Yo4gRIW63gE/V4efOpGgiCI/AAAAAAAAAWI/9Fo0Tzvi0xEYwJ7YAIfq1L_xnMqv7-nigCLcB/s640/13626379_10205685366288475_1568563353091982681_n.jpg" width="427" /></a></div>
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This picture was taken during the 60 minutes I actually spent outside of my house on Friday.</div>
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I woke up that morning in a state of pain and fatigue I hadn't experienced in years. Knowing that working at the office was out of the question, I crawled to my home office and set up shop at my desk. But as I tried to compose emails and actually do my job, my heavy eyes began to close, and my body contorted as it tried to find a comfortable position.</div>
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I knew I was completely useless. I made it a whole two hours into work before messaging my boss that today just wasn't going to happen. I rarely call in sick, but on Friday... I just hadn't felt like that since before I was diagnosed with endometriosis.</div>
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Immediately, I went back to bed, only waking to put some food in my system and then go back to sleep. Despite painkillers and a heating pad, my whole body shuddered with pain, and I reached behind me to grab onto our non-existent headboard for support. What was going on?!</div>
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There was a brief respite around 5 p.m. when I left the house for a whole hour to attend an event I was obligated to be at. (And look how nicely I cleaned up!) But the whole time, I felt nauseous, and I hunched over where I stood, as my body tried to sort out every awful symptom.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-ZzgpgPOMo8A/V4ejiFbmnvI/AAAAAAAAAWU/i1oMrvmGxiEdJqsUzDgZHqj18ixe8SvLgCLcB/s1600/giphy.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://2.bp.blogspot.com/-ZzgpgPOMo8A/V4ejiFbmnvI/AAAAAAAAAWU/i1oMrvmGxiEdJqsUzDgZHqj18ixe8SvLgCLcB/s320/giphy.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Actual footage of me at that event</td></tr>
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I lasted there as long as I could before returning to my dark and cool bedroom, where bright lights wouldn't further irritate my pain.</div>
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Now a week later, I still have no idea what set off such a severe flare-up. Had I been in just a little more pain, I probably would have had to visit the hospital. When I was a kid and experienced early endometriosis symptoms, nothing but sleep would ever ease up my crippling pain that coursed through my entire body. That's how I felt on Friday - for the first time in years.</div>
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All of that is to say that, unsurprisingly, I haven't felt that great yesterday. I have a lot of things I wanted to pack into one blog post, but I thought I'd talk about just one of them for now.</div>
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As I've been dealing with abnormal amounts of pain and fatigue lately, it's been irritating to also deal with the list of things I have to do and my desire to actually get them done. My husband, Andrew has been amazing at picking up for my slack around the house while I sort my body out, but there are some things that I just have to do for myself.</div>
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Like, for example, put on my own makeup. Or dry my hair. Andrew is unfortunately useless in these departments.</div>
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<a href="https://4.bp.blogspot.com/-htNfiXottVU/V4eklAk7T2I/AAAAAAAAAWc/RYqe2GpTNW4vTPACD1XuaYp_PuPBtEilACLcB/s1600/giphy%2B%25281%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://4.bp.blogspot.com/-htNfiXottVU/V4eklAk7T2I/AAAAAAAAAWc/RYqe2GpTNW4vTPACD1XuaYp_PuPBtEilACLcB/s320/giphy%2B%25281%2529.gif" width="320" /></a></div>
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These really shouldn't be difficult tasks. Neither should making my dinner or cleaning off the counters be such challenges. But what makes them so hard for me is the fact I have to stand in one place while my entire pelvis is on fire.</div>
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Moving around and walking honestly aren't as hard for me. I think it's why I can sometimes (but not recently, obviously) manage a work out, even if I've been hurting that day. But standing... nope. Can't be done.</div>
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After talking to my mom about this, she had the perfect suggestion, and I have no idea why I didn't think of it on my own. Mom, being a cancer patient, has the same issue with standing that I do. So to make it possible to get things done in the kitchen, she got a bar stool.</div>
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Immediately, I jumped onto Facebook Marketplace to see what I could find. And lo and behold, someone was giving away for free this poor abandoned bar chair!</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-f2SOx5F4ENM/V4elwwrKKZI/AAAAAAAAAWg/LnEapwkYtfIxw0JPhuF8boSnqflfXIQYACLcB/s1600/13512162_10153890461549332_6937563014566738778_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://1.bp.blogspot.com/-f2SOx5F4ENM/V4elwwrKKZI/AAAAAAAAAWg/LnEapwkYtfIxw0JPhuF8boSnqflfXIQYACLcB/s400/13512162_10153890461549332_6937563014566738778_n.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So sad and homeless! #adoptdontshop</td></tr>
</tbody></table>
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Andrew drove off to rescue the chair and bring it back to our loving home. I don't think he quite understood initially why I needed it, but as always, he was willing to do what I needed to make myself feel better.</div>
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The chair - which I've affectionately named Tony for absolutely no reason whatsoever - is now stationed in my kitchen, ready to report for duty. So far, he's helped me put on makeup before my physical therapy appointment and make dinner last night. Knowing that I have a chair to support me makes it easier to even start these tasks when I'm in pain and when moving doesn't seem like a fun things to do.</div>
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I felt a little ridiculous needing a chair - at 25 years old - to do routine chores. But I got to a point where I just wasn't being productive anymore, and I didn't enjoy having to shout recipe instructions to Andrew from my place on the couch. I want to do these things myself. I want to take care of my home and enjoy making food and do my hair and makeup in the morning.</div>
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So if I want all of these things, I can't be too prideful anymore. I have to meet my body halfway. And I can't be ashamed of what it needs.</div>
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I won't need Tony every single day or every single week. But it's good to know that, like my actual supportive husband, he's here for me when I do need him.</div>
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<a href="https://3.bp.blogspot.com/-jmC4HLTYmYs/V4enixhkpDI/AAAAAAAAAWs/gvqefkETVBMLpuU-2rgVzPl-yBLWGFqvgCLcB/s1600/13664799_10205712163998401_989404680_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://3.bp.blogspot.com/-jmC4HLTYmYs/V4enixhkpDI/AAAAAAAAAWs/gvqefkETVBMLpuU-2rgVzPl-yBLWGFqvgCLcB/s400/13664799_10205712163998401_989404680_n.jpg" width="263" /></a></div>
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Now if only he could take care of that pile of laundry and dirty mirror...</div>
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Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-4969534327851521362016-07-03T14:18:00.002-04:002016-07-03T14:41:40.148-04:00Finding Joy in Caring for Yourself<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-x0zEHmuYHAg/V3lKx0svecI/AAAAAAAAAVI/3AjObQ92I5w8ZiYZP2ZAkeSHQOBIIfvzQCLcB/s1600/13528714_10205648024674958_4186841900540177781_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://2.bp.blogspot.com/-x0zEHmuYHAg/V3lKx0svecI/AAAAAAAAAVI/3AjObQ92I5w8ZiYZP2ZAkeSHQOBIIfvzQCLcB/s640/13528714_10205648024674958_4186841900540177781_n.jpg" width="313"></a></div>
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<i>Before I get into my stream of conscience, two things that might interest you. FIRST, a <a href="https://tinyletter.com/traceoddity"><b>newsletter</b></a> for those who want to read more of my writing outside of this blog or see what I'm reading this week. And SECOND, if you weren't already aware of it, <b><a href="http://eepurl.com/bHfsV9">another newsletter</a></b> that sends updates from this blog to your email inbox.</i></div>
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<i>Thank you for your time.</i></div>
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<i>---</i></div>
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As anyone with a chronic illness knows, taking care of yourself is exhausting. Whether it's the day-to-day wake up, drink coffee, shower, get dressed, drink additional coffee, or finding the energy to do things just because they're fun and you enjoy them, it's honestly tough. </div>
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When you're fighting pain and fatigue, managing <i>that </i>becomes your priority - and rightfully so.</div>
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I've talked about the idea of self-care and taking time for yourself before, but I've found sort of a different approach to it. Rather than going out of my way to care for myself, I'm trying to find joy in my daily rituals.</div>
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I wake up in pain most days of the week. While I lay in bed until the last possible second, and my dog paws at my face, it's not always easy to motivate myself to face the morning. </div>
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I mean, my limbs seriously can't move. Or at least not without causing more pain. And if I roll over and pull my heating pad off the floor, the warmth will quickly lull me back to sleep before I have a chance to rebound from my pain. (I also have blackout curtains in our room, and I have no idea why I made this terrible decision.)</div>
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<a href="https://1.bp.blogspot.com/-r7KuWJwsrdY/V3lPOuPGd-I/AAAAAAAAAVU/MAPJwvgQe7cpJX40-Ho-VQCmgckgGfe-QCLcB/s1600/giphy%2B%25281%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="224" src="https://1.bp.blogspot.com/-r7KuWJwsrdY/V3lPOuPGd-I/AAAAAAAAAVU/MAPJwvgQe7cpJX40-Ho-VQCmgckgGfe-QCLcB/s320/giphy%2B%25281%2529.gif" width="320"></a></div>
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To give myself incentives for waking up and being an adult, I started laying out clever Tracy Traps. These come in various forms.</div>
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<b>1. Good coffee</b></div>
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<a href="https://4.bp.blogspot.com/-80DD4OYDJDE/V3lQr6_UMyI/AAAAAAAAAVg/pqKCVcni6Z8eCWuIuol_wZ8KegJN1O27QCLcB/s1600/giphy%2B%25282%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="163" src="https://4.bp.blogspot.com/-80DD4OYDJDE/V3lQr6_UMyI/AAAAAAAAAVg/pqKCVcni6Z8eCWuIuol_wZ8KegJN1O27QCLcB/s320/giphy%2B%25282%2529.gif" width="320"></a></div>
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I have yet to teach myself to appreciate coffee on its own. So for me, cinnamon-flavored coffee is my morning mug of choice. I even have an assortment of fun little mugs that bring me joy. (You know those Starbucks "You are here" mugs? Yep, those!)</div>
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As I'm trying to crawl out of my blanket cocoon, it's comforting to know that I have something - however small - to warm me from the inside out. And I can't possibly have coffee without my breakfast, so I get extra gold stars for actually feeding myself something healthy and taking my medication.</div>
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<b>2. A comforting shower</b></div>
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<a href="https://2.bp.blogspot.com/-AgRbCoWNt6s/V3lSqVAEMPI/AAAAAAAAAVs/eDEKbTb-rIwTRxMRkLK9bSQdLHddXtD_wCLcB/s1600/giphy%2B%25284%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="280" src="https://2.bp.blogspot.com/-AgRbCoWNt6s/V3lSqVAEMPI/AAAAAAAAAVs/eDEKbTb-rIwTRxMRkLK9bSQdLHddXtD_wCLcB/s320/giphy%2B%25284%2529.gif" width="320"></a></div>
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Somehow, showers are one of the most exhausting things ever. I think it's the fact I'm standing in one place for awhile. And I don't have time for a bath in the morning because, as I said earlier, I'm too busy being pawed in the face by a dog who would like me to wake up and take her outside.</div>
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To motivate myself here, I picked up better quality shower gels and lotions from Bath and Body Works. (PSA: Their semi-annual sale is amazing, and I get a year's worth of stuff for like $30.) For whatever reason, this helps me find joy in something that's unfortunately a chore for many people with chronic pain. Maybe it's because I like everything around me to smell wonderfully all the time? It would explain my candle obsession...</div>
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<b>3. Clothes I actually like</b></div>
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<a href="https://2.bp.blogspot.com/-Z_BAaG2rkZg/V3lUZNgC_kI/AAAAAAAAAV4/VOHcKKJhk4Q0IW2J_mvyDxTcXrfjCD9GQCLcB/s1600/giphy%2B%25285%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="226" src="https://2.bp.blogspot.com/-Z_BAaG2rkZg/V3lUZNgC_kI/AAAAAAAAAV4/VOHcKKJhk4Q0IW2J_mvyDxTcXrfjCD9GQCLcB/s320/giphy%2B%25285%2529.gif" width="320"></a></div>
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On days when I'm not obligated to be a real person, it's easy for me to put on something purely with comfort in mind. And I really enjoy and need that some days, but I've also found it can keep me stuck in a rut. There's something empowering and energizing about simply wearing clothes I look nice in, blow-drying my hair and putting on makeup. (That last one is the absolute hardest, and I'm still not sure why.) </div>
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For a while, I didn't really understand how someone could find joy in clothing. I wore things I liked, but I always played it safe. Lately, I've challenged myself to wear things that are a little bolder and little less mainstream because that's how I've always wanted to dress. (If you know who <a href="http://67.media.tumblr.com/76d79218f05050d8958775e858815f43/tumblr_o493fbzjRm1uklwx9o1_1280.jpg">Noel Fielding</a> is, he's been my inspiration to break out of my comfort zone.) And I end up being proud of myself and finding joy in something that's hard to do when you're fighting pain and fatigue.</div><div style="text-align: justify;"><br></div><div style="text-align: justify;">I also get literally 90 percent of my clothes from thrift shops, which is a joy on its own for me. </div>
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You may not find joy in the same things I do. It might not even be "things" for you and might be experiences or people or feelings or something else. But whatever it is, I encourage you to find ways to weave them into your daily routine. It makes self-care a lot less daunting and much more natural.</div>
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Comment on this post or my <a href="https://www.facebook.com/sunflowers.still">Facebook</a> page, and tell me what you do for self-care.</div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com1tag:blogger.com,1999:blog-9150378473884064415.post-81429466409931833712016-06-21T11:50:00.004-04:002016-06-21T11:52:33.780-04:00The Skin I'm In<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-qxd7IYJ2iqY/V2lWfnDk5iI/AAAAAAAAAUE/JVGKALFot8kHnWDuf3igETLKA7xeMgx1gCLcB/s1600/13325509_10205496239440422_7483560548748349145_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="398" src="https://4.bp.blogspot.com/-qxd7IYJ2iqY/V2lWfnDk5iI/AAAAAAAAAUE/JVGKALFot8kHnWDuf3igETLKA7xeMgx1gCLcB/s400/13325509_10205496239440422_7483560548748349145_n.jpg" width="400" /></a></div>
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<i>(TW: disordered eating, body image, etc.)</i></div>
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So once again, my life's insistence on being in constant motion has kept me from writing. This is kind of a weird time for me, both work-wise and otherwise. I feel like the pressure and stress have eased up a bit, but I'm still pretty busy. (As an illustration, my pup, Juno and I toured the entire state of Illinois last Tuesday through Sunday, and she's still sleeping off that trip.)</div>
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Luckily, my husband, Andrew and I were able to take some time away from life and go to a music festival in Cincinnati, which is where the above picture of me was taken. Unlike Bonnaroo, which we hit up a few years ago, Bunbury is pretty low-key. We saw a bunch of bands I'd been waiting a long time to see (The Killers and Grimes, to name my favorites), but we didn't have to endure camping in the hot sun for a whole weekend.</div>
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But I still took naps on the grass during sets I didn't care about to manage my endo pain.</div>
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<a href="https://3.bp.blogspot.com/-BZGF9gzkiLQ/V2lXvVhCJ7I/AAAAAAAAAUQ/wcMMUc0CDosdkM8pgbYOAC1kDv0IuK5VgCLcB/s1600/giphy%2B%25283%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="293" src="https://3.bp.blogspot.com/-BZGF9gzkiLQ/V2lXvVhCJ7I/AAAAAAAAAUQ/wcMMUc0CDosdkM8pgbYOAC1kDv0IuK5VgCLcB/s320/giphy%2B%25283%2529.gif" width="320" /></a></div>
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While my endo pain mostly stayed away, I was forced to confront another issue that I regularly deal with: my body image.</div>
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Before I hear a chorus of "Ohhh Tracy! But you're so thin!" let me say that I know. I've heard that my entire life. And honestly, I don't think I took issue with my body until after I graduated college and started living on my own. It wasn't necessarily <i>because</i> of endometriosis, but it happened to coincide with it.</div>
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When endometriosis really made its presence in my life known, it added a new layer of discomfort with my body. Obviously, its pain and fatigue are difficult to deal with. But when your body rejects certain foods and drinks, or when it bloats without warning, or when it just doesn't want to do other things it's "supposed to" do, you start to lose confidence in your body. You start to feel like it isn't yours. And then, if you're me, you kind of resent it.</div>
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I think that when you start to view your body as a foreign place, you start to feel cramped and anxious inside of it. That feeling intensifies for me when I'm out of my routine and my comfort zone - like I was at Bunbury.</div>
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On day one, I felt great about myself. I was wearing a crop top for the first time that summer and prancing around with music-festival-induced joy. By day two, I was tired and not eating the way I usually do, so the body dysmorphia started.</div>
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In our hotel room, I stood in front of a mirror and picked at myself, grabbing at my sides and neck and anywhere else I determined there was "fat." Andrew chided me with "Would you quit it? You look beautiful." But I didn't want to hear it.</div>
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You see, no matter how often I hear "You're thin" or "You're pretty" or whatever, it doesn't connect with me. It's like in my brain, I know they're probably right. But in... my heart? My other brain? It doesn't connect.</div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-MPKt0dpjbeY/V2laQJo445I/AAAAAAAAAUc/Z1GRl3QtvnksJG5UnAj-1N6eeaiMEbZqACLcB/s1600/giphy%2B%25284%2529.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://1.bp.blogspot.com/-MPKt0dpjbeY/V2laQJo445I/AAAAAAAAAUc/Z1GRl3QtvnksJG5UnAj-1N6eeaiMEbZqACLcB/s320/giphy%2B%25284%2529.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Like this Pomeranian</td></tr>
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I've never had a full-blown eating disorder, but I have had bouts of disordered eating. I think they label it as "orthorexia" - when you try to eat so healthily that you end up depriving yourself of adequate nutrition, calories, etc. When I was first diagnosed with endometriosis - and in the months prior when I knew I was sick but didn't know why - I'd go through a few weeks of that, stop for months and then pick up again.</div>
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It's almost like I was fighting a body that I thought was failing me. And whenever my energy runs low and my pain runs high, and I can't make it to the gym as frequently as I want, or I can't eat the way I want, these issues start up again.</div>
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It's especially frustrating to be dealing with all of this at a music festival. Aside from the fact that, I mean, I'm supposed to be having fun, I'm surrounded by people in crop tops, cute sundresses and short shorts. And seeing them makes me pick apart my body again.</div>
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Andrew took a few pictures of me that weekend, and in between sets, I'd zoom in on my imperfections, as if staring at them would make them go away. If Andrew caught me doing it, he'd gently tell me to put my phone away or try to tug it out of my hand. But as soon as he wasn't paying attention, I'd open up the picture again and stare.</div>
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I know I hold my body to high standards. Despite having a chronic illness with painful and frustrating symptoms that always fight my best intentions, I push my body to a level no one expects out of me - except for me. For a while, I forced myself to go to the gym five times a week, regardless of how awful I felt or how much pain I was in. I’m all for fitness, and exercising does immensely improve my endometriosis symptoms. But I was practically abusing myself.<br />
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I spend a lot of time scrolling through Instagram and comparing my stomach and muscle tone to others'. I can't help but say to myself every time I see someone stronger and thinner than me, "Look at that person. If she can do that, so can you."<br />
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<a href="https://4.bp.blogspot.com/-J2Wchw99lWM/V2lfT2wzS2I/AAAAAAAAAUs/B8CHMlyNJVArDOvl4p5OeL5rBrNGbXbVgCLcB/s1600/giphy%2B%25285%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="223" src="https://4.bp.blogspot.com/-J2Wchw99lWM/V2lfT2wzS2I/AAAAAAAAAUs/B8CHMlyNJVArDOvl4p5OeL5rBrNGbXbVgCLcB/s400/giphy%2B%25285%2529.gif" width="400" /></a></div>
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All of this is rooted in fear. I know I'm afraid of losing complete control over my body, when I've already lost so much. I'm not entirely sure why I seem so convinced that will happen, but it's probably because my family has a long history of complicated, ongoing illnesses. And so I guess I've always been waiting for my turn, and well, it came with endometriosis.<br />
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But the good news is that after a while of being frustrated with my body, I eventually hit a respite. And that came in the form of Grimes' set.<br />
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After a few hours of silently hating myself at Bunbury, Andrew and I crossed to the other side of the park to finally see Grimes. Up until then, I’d only really considered myself a casual fan of her music. I knew her most popular songs, but I hadn’t ever seen her live or delved into her lesser known music. But even still, I know she’d put on a killer show, and I wanted to see it, no matter how terrible I felt. </div>
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The pre-show music cut out, and the crowd around me erupted as a trio of dancers came out on stage to synthesizers and strings. I felt genuinely excited for the first time that day and craned my neck to see any sign of Grimes. Minutes later, she pranced out with a huge smile and a sprite-like energy that immediately captured her audience and set their feet to dancing.</div>
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Grimes couldn’t possibly care less about what you thought of her appearance. She was clearly wearing an outfit she thought was fun and fabulous, even though I’d never find it on Pinterest. She wasn’t wearing makeup, while I put on a full face that would only melt under the sun. She grinned and glittered with every button she hit, even though she apologized several times over for hitting the wrong one with the lights hard to see under the bright sky. But she never seemed to falter. She flowed.</div>
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Or as Andrew put it, “I feel like she wouldn’t give a shit if no one was here. She’d keep doing what she’s doing. She’s doing this for her.”</div>
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I decided that day that I wanted that.</div>
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<a href="https://1.bp.blogspot.com/-2rOpVz9Tm8E/V2lhiD3M36I/AAAAAAAAAU4/V6-2eE1MCBEzkvNNKMqcBelH5p30b_quACLcB/s1600/giphy%2B%25286%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="184" src="https://1.bp.blogspot.com/-2rOpVz9Tm8E/V2lhiD3M36I/AAAAAAAAAU4/V6-2eE1MCBEzkvNNKMqcBelH5p30b_quACLcB/s320/giphy%2B%25286%2529.gif" width="320" /></a></div>
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As I finally threw caution to the wind and showed off my sick dance moves, a line of women about my age pushed their way out of the crowd. One of them suddenly grabbed my arm, and I bent my head down to hear her. “You look so cute.” </div>
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Flustered and mildly embarrassed, I stuttered a thank you without returning the compliment. In my moment of Grimes-inspired vulnerability, no one shamed me. No one screeched at me to cover up the parts of my body I was ashamed of. No one mocked my dancing. In fact, it was celebrated. </div>
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Grimes’ show ended a few minutes after it was supposed to, but I wanted more. I wanted to stay in that state of vulnerability and acceptance and actually loving my body for what it was. But I decided it didn’t have to end after the last song or the last day of a music festival. I wanted to take it home with me. </div>
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I’ll always struggle with accepting my body. Now well into my 20’s, it’s ingrained in me. But it doesn’t have to be my resting place anymore. I can remember the way I felt watching Grimes, awestruck and inspired by her I-couldn’t-give-two-shits music and persona. That’s something worth wanting to emulate — not some touched-up abs on Instagram. </div>
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There’s nothing wrong with wanting to better yourself. I'll always want to do that, especially with my endometriosis. But there is something wrong with wanting to be something that isn’t yourself. Today, I choose vulnerability. Today, I choose me.</div>
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<i>This was adapted from <a href="https://medium.com/@TraceOddity/naked-at-a-music-festival-30610727c4db#.3j31qrrm2">a piece I wrote on Medium</a>.</i></div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-76220921167366772422016-05-17T20:35:00.001-04:002016-05-17T21:14:13.522-04:00Time to Stop Saying 'I Don't Want To'<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Qna__n3e9zc/Vzu5bIsteaI/AAAAAAAAASs/HQIfsKWRWVcoSyB__KSkABuXGYD44eXOACLcB/s1600/doing-science-photo-u1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://1.bp.blogspot.com/-Qna__n3e9zc/Vzu5bIsteaI/AAAAAAAAASs/HQIfsKWRWVcoSyB__KSkABuXGYD44eXOACLcB/s320/doing-science-photo-u1.jpg" width="320" /></a></div>
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Wow. I knew I hadn't blogged in a while, but I didn't know I hadn't posted <i>anything</i> in May.</div>
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To be honest, endometriosis and I haven't been on good terms lately. <b>We're fighting. Hard. </b>And it's made me not really want to talk about endo or my life with it because I'm just not sure how to process everything right now.</div>
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For the past three-ish weeks, I've felt like complete crap. I've been hurting in new places and new ways. I've been tired and crabby. I've been discontent and unsure what to do with anything I was experiencing. </div>
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And I knew that, inevitably, I'd have to confront the way I've been feeling because, <i>shockingly</i>, ignoring your medical problems rarely ever gets rid of them.</div>
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But even knowing this, even having years of experience in juggling symptoms, my recent response to handling my medical care has mostly been <b>"I don't want to."</b></div>
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<i>"I don't want to get tested for <a href="http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/definition/con-20022439">interstitial cystitis</a>. I don't want to have a scope done. I don't want to go through more treatment."</i></div>
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<i>"I don't want to go back to physical therapy. I don't want to give up hours a week and be even more sore and exhausted. I don't want to be poked and prodded all day, only to have it not even help."</i></div>
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<i>"I don't want to go back to my doctor. I don't want her to change my medicine. I don't want her to suggest Lupron."</i></div>
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Don't worry. I was driving myself nuts, too.</div>
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<a href="https://1.bp.blogspot.com/-1nU7_iRwXAY/VzupEl1GMzI/AAAAAAAAARs/4qetBgk9-7w2Jg05NAk7be61BrAteYx1ACLcB/s1600/giphy.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="317" src="https://1.bp.blogspot.com/-1nU7_iRwXAY/VzupEl1GMzI/AAAAAAAAARs/4qetBgk9-7w2Jg05NAk7be61BrAteYx1ACLcB/s320/giphy.gif" width="320" /></a></div>
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I think this is a lovely insight into my current state of mind: an interesting mix of me being <b>totally exasperated</b> with the state of my endometriosis, just a little under two years since my diagnosis, but me also thinking that <b>I clearly know everything about endo now</b> since I've been sick for so long.</div>
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I obviously know exactly what my experience will be when I try physical therapy again. Or when I'm diagnosed with another condition. Or when I visit my doctor.</div>
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Because I can see into the future and know exactly how things are going to play out.</div>
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Mmhmm. Yep.</div>
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Since I'm a psychic and I have nothing to learn from this world, I proceeded to be a complete <i style="font-weight: bold;">pain in the ass</i> for a few weeks while I whined about my body. I felt totally beat up after multiple weeks of traveling. My pain got in the way of my gym routine. I even lost my appetite for whatever reason, resorting to mostly eating stuff I could microwave in under one minute.</div>
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How does the quote go? <b>"If you keep doing what you're doing, you're going to keep getting what you're getting." </b>Or something like that.</div>
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However it goes, I needed to understand it long before I actually did. I wasn't going to feel better if I kept trying things that weren't working.</div>
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I think I finally had enough of myself because I asked a fellow endo sister for the name of her physical therapist.</div>
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I knew it was time for me to go back to a PT. I needed to stop putting it off and thinking I could self-manage my pain with exercise and diet. Yeah, both of those things help me <i>a lot</i>, but it was time to bring in someone who actually knew what they were doing.</div>
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So this week, I finally got an appointment, screamed at myself in a mirror for a few minutes to get myself psyched up and met with my new PT.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-cSMHpCKK4ys/VzuxPw7uQdI/AAAAAAAAASI/TFTLApAjGk84gqwybe0aNz-_GyROPTa_wCLcB/s1600/giphy%2B%25282%2529.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://4.bp.blogspot.com/-cSMHpCKK4ys/VzuxPw7uQdI/AAAAAAAAASI/TFTLApAjGk84gqwybe0aNz-_GyROPTa_wCLcB/s1600/giphy%2B%25282%2529.gif" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me, upon greeting my physical therapist</td></tr>
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I only had an introductory appointment, but I can already tell that I like her better than my last physical therapist.</div>
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Before, I didn't only dread physical therapy because it made me feel physically miserable. It also made me feel miserable about myself. I don't blame the PT's because they were obviously doing their jobs by helping me. But I felt talked down to and like I was having my hand held through the process.</div>
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Somehow, through that experience, I ended up feeling like <i style="font-weight: bold;">my body wasn't my own.</i> I felt totally removed from it, almost like I was rejecting it. I guess I was just so frustrated and defeated, and I wanted nothing more to do with it. I spent an hour a week being told what else was wrong with me, being put in more pain and feeling like this was as good as it was ever going to get. </div>
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<i>Probably could have used another type of therapy at the time, now that I'm thinking of it...</i></div>
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Now, I feel like my PT and I are figuring this thing out <i>together</i>. It's a team effort more than a "Here are all the things wrong with you, Tracy. Please put up with me fixing you while you just hang out."</div>
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While I "graduated" from physical therapy, I didn't feel like the effects were long lasting. I'm sure a good chunk of that was my fault for not doing enough homework and at-home exercises. But truthfully, my heart wasn't in it. My brain wasn't in it. </div>
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Instead of viewing it as "Here's a way for me to feel better and be happier," the entire experience quickly turned into <b>"I'm broken, and I need fixing."</b></div>
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No wonder I felt burnt out after a few weeks.</div>
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So now, I'm seeing my new PT twice a week, starting next month. I most assuredly will be sore and exhausted and, at times, defeated again. But I'm bound and determined to view it more positively.</div>
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(AND my physical therapist said I had a very strong six-pack muscle, so I'm already feeling pretty great about myself.)</div>
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<a href="https://1.bp.blogspot.com/-1VCPUKa9IWs/Vzu2uq59gPI/AAAAAAAAASY/jer7UZQbAxI_9EIfDCkFutHxFiIpsshhACLcB/s1600/giphy%2B%25283%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-1VCPUKa9IWs/Vzu2uq59gPI/AAAAAAAAASY/jer7UZQbAxI_9EIfDCkFutHxFiIpsshhACLcB/s320/giphy%2B%25283%2529.gif" width="320" /></a></div>
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That's, of course, not the end of it. I still have to confront my doctor. While my PT is pretty sure I don't have interstitial cystitis, there's still something out there that's making me feel so miserable.</div>
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This is the scary part for me. I like my medication that I'm on now, but I guess I need... something else? Something additional? I don't know.</div>
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My last ultrasound didn't show an immediate need for surgery. But it didn't rule it out. It's been almost two years since the surgery that diagnosed me, and a lot could have changed in me since then.</div>
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That's the part that really sucks about endometriosis. You really don't <i>know</i> what's going on, unless you cut someone open. And like I said in an earlier post, that's led me to wonder, <b>"Is this it?" </b>Just a lifetime of surgeries?</div>
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At some point, I have to accept the cards that I'm dealt. I have to admit that I can only do so much on my own. I have to surrender to the care of people who went to school for years and years to treat me.</div>
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<b>And if I'm not getting answers, I have to keep looking. Stopping won't get me anywhere at all.</b></div>
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Hopefully, I'll be compelled to write more on this blog, despite being so frustrated and tired. </div>
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I'm leaving this gif of a beautiful Benedict here to encourage me.</div>
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<a href="https://1.bp.blogspot.com/-7omwypQkyAY/Vzu46NGhWLI/AAAAAAAAASk/NnUYJJxTUnESj04nRO6CMWuR67Bs0KZMwCLcB/s1600/giphy%2B%25284%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="157" src="https://1.bp.blogspot.com/-7omwypQkyAY/Vzu46NGhWLI/AAAAAAAAASk/NnUYJJxTUnESj04nRO6CMWuR67Bs0KZMwCLcB/s320/giphy%2B%25284%2529.gif" width="320" /></a></div>
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Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-25103015194963351662016-04-25T15:03:00.001-04:002016-04-25T23:01:52.176-04:00I Am (Probably) Never Having Kids<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container tr_bq" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-yx02xPyB1c4/Vx5NS-vnJ5I/AAAAAAAAAQE/jlODm4Y5AGAEVZ_UXJKHaQe6SmfMHDZDACLcB/s1600/12376322_10205073083621791_4616350631159294497_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://2.bp.blogspot.com/-yx02xPyB1c4/Vx5NS-vnJ5I/AAAAAAAAAQE/jlODm4Y5AGAEVZ_UXJKHaQe6SmfMHDZDACLcB/s400/12376322_10205073083621791_4616350631159294497_n.jpg" width="320"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My little family</td></tr>
</tbody></table>
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<i>(TW: lots of talk about infertility, miscarriages, IVF, etc.)</i></div>
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Dear friends, family, colleagues and other persons of interest,</div>
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<b>I am never having kids.</b></div>
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No, I probably won't "change my mind." No, I'm not the least bit sad about this. And yes, I've thought this over for a long time.</div>
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So let me repeat myself. <b>I am never having kids.</b></div>
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My husband, Andrew and I reached this conclusion a few weeks ago, and I decided to use<b> <a href="http://www.resolve.org/national-infertility-awareness-week/home-page.html">National Infertility Awareness Week</a></b> as a time to talk about it. Because while most of our decision centered on a general aversion to raising a baby, it also involved <i>1) my questionable fertility, 2) our poor alternative options and 3) my overall health.</i></div>
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Before I get into my story, please note that <b>I am absolutely not trying to talk you out of having kids or going through fertility treatments.</b> I am <i>all for</i> women making their own decisions and choosing what is best for them. This is just a play-by-play of how I came to my own personal choice, and my tone will probably come off as sarcastic and vitriolic because that's how I do. But <i>please, please, please</i> don't take medical or financial advice from me, and please do your own research before coming to a conclusion.</div>
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Okay. Glad we settled that.</div>
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So once upon a time, I was figuring out finances for our household. I am a big saver, and I like to plan ahead for things. Having come to the realization at a young age that <i style="font-weight: bold;">literally anything can happen at any given moment</i>, I secured a solid "emergency fund" for us and then moved on to our next big future expense - a house.</div>
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As I started to map out how much we needed to save to afford a down payment on a house, a little voice in the back of my head said, "Yeah, okay, but what about your uterus?"</div>
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<b>"What About My Uterus?" </b>should honestly just be the title of my autobiography. It comes up in <i>every. major. decision.</i></div>
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<a href="https://3.bp.blogspot.com/-z1px7T4yCG0/Vx5SfAjsD4I/AAAAAAAAAQU/084h3h6-ftQH8mKH0F2MQjn-Djw_m9nVgCLcB/s1600/giphy%2B%25282%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://3.bp.blogspot.com/-z1px7T4yCG0/Vx5SfAjsD4I/AAAAAAAAAQU/084h3h6-ftQH8mKH0F2MQjn-Djw_m9nVgCLcB/s1600/giphy%2B%25282%2529.gif"></a></div>
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You may know by now that <i style="font-weight: bold;">endometriosis is a leading cause of infertility among women</i>. Typically, this is because scarring and adhesions block the Fallopian tubes, making it difficult to impossible for a woman to conceive. But other times, the general quality of a woman's eggs are depleted because of endometriosis, so an egg may never develop into a fetus.</div>
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On top of that, tube blockage can cause ectopic pregnancies (in which the egg implants outside of the uterus), miscarriages, stillbirths and other pregnancy complications. </div>
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Looking at my likely infertility, I knew that Andrew and I would have to start saving money. The lovely thing about infertility is that <b>it adds insult to injury.</b> </div>
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"Oh, you can't have a baby on your own? That's fine. How about you try in vitro fertilization?"</div>
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Full disclosure: I've never tried IVF. I have friends and Twitter buddies who have, with mixed results. But from talking to my friends, reading a lot and delving into other resources, I've learned four things about IVF: </div>
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<ol>
<li><b>It costs thousands of dollars.</b></li>
<li><b>It's probably not even slightly covered by your insurance. </b></li>
<li><b>It most likely won't take the first time. </b></li>
<li><b>It's emotionally and physically painful</b></li>
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According to this <a href="http://www.forbes.com/sites/learnvest/2014/02/06/the-cost-of-ivf-4-things-i-learned-while-battling-infertility/#57b5a3d32a79">Forbes article</a>, IVF costs approximately $12,000 per cycle <i>before</i> medication, which runs between $3,000 - $5,000. Other parts of the process can costs thousands of dollars more, and choosing to "freeze" your eggs or embryos can add to that.</div>
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I've heard through various article, blogs, website, resources, etc. that <i><u>three</u> </i>is the magic number when it comes to IVF cycles. Women are often 66 percent more likely to conceive after three IVF cycles. </div>
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So. Three. That's three times you have to pay the aforementioned thousands of dollars.</div>
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Let's say it cost you $20k a pop. So $20k times three = <b><i><u>$60,000.</u></i></b> That's more than my student loans from my private liberal arts college. (Which are, you know, also in the tens of thousands.)</div>
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<a href="https://4.bp.blogspot.com/--2lZ4ZQu8xs/Vx5X8pYwFRI/AAAAAAAAAQk/KY3HJWorhusc_pdxNPH8lmVNWMur8d9LgCLcB/s1600/giphy%2B%25283%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="220" src="https://4.bp.blogspot.com/--2lZ4ZQu8xs/Vx5X8pYwFRI/AAAAAAAAAQk/KY3HJWorhusc_pdxNPH8lmVNWMur8d9LgCLcB/s320/giphy%2B%25283%2529.gif" width="320"></a></div>
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And if/when IVF <i>does</i> finally take, please keep in mind that you're adding the cost of actually giving birth to that child to your approximately $60,000. Luckily, health insurance will cover part of that... but probably not all of that.</div>
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There are many states out there that require varying levels of health insurance to cover fertility treatments. My state, however, is not one of them, leaving women to figure out the fun part of <i><u>"how am I actually going to ever afford this?"</u></i></div>
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You do have some financing options, albeit complicated ones. If you'd like to learn more about them, check out <a href="http://www.resolve.org/family-building-options/making-treatment-affordable/">Resolve's resources</a>.</div>
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So at 25 (me) and 30 (Andrew) years old and less than two years into marriage, Andrew and I can't really afford three rounds of IVF. I mean, I <i>honestly </i>don't really know anyone our age who can. </div>
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But let's pretend I could handle the financial burden and physical pain of IVF on top of my already chronic physical pain and other health-care costs.</div>
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The emotional pain of IVF... that's something I'm definitely not ready to handle.</div>
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Unfortunately, just because an embryo comes out of IVF does not always mean it's going to be viable. It doesn't always mean the baby will survive to term. And while three cycles may be the magic number for IVF, it's frequently more for many, many women.</div>
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I like to think of myself as an emotionally strong person. But that doesn't mean I don't crumble into a ball and cry because <i style="font-weight: bold;">a major organ in my body isn't functioning in any way, shape or form that can be described as "normal." </i>I hate it. I really, really do. And I really don't think I can deal with more frustration and feelings of failure.</div>
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That's the insult to injury. <i>Young women are robbed of so much with conditions like endometriosis - things they never expected to lose.</i> And after navigating the agony and frustration that come with these diseases, women who want to have a baby then also have to face the pain and disappointment that usually accompanies IVF and other fertility treatments.</div>
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<b>In their prime fertility years, these women are force to navigate their health, and their developing career, and now additional financial burdens, and now their ability to have a kid. To me, it's injustice.</b></div>
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It just... it just sucks, guys. There's nothing else to say. It just make me <i>so. angry. </i>for these people.</div>
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Anyway, where was I?<br>
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<blockquote style="text-align: justify;">
"Hey, Tracy! IVF may not work, but have you thought about adoption?"<br>
"Yeah, that's like <b><i>$40,000 on average</i></b> and can take years, and also, adoption credits suck."<br>
"Oh, okay. Uhhh surrogacy?"<br>
"olol."<br>
"Uh. Fostering?"<br>
"Well, uhh that's not a guarantee that I'm going to be able to adopt said child."<br>
"..."<br>
"..."<br>
"..."<br>
"...you see my problem here now, right?"</blockquote>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-bzD2rizPiOk/Vx5dZ8OgS_I/AAAAAAAAAQ0/5VD9iEyJVwE07QY4hLrodrD69pAxJB6TwCLcB/s1600/tumblr_mxz4zoaBX01sm9s3lo1_400.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://3.bp.blogspot.com/-bzD2rizPiOk/Vx5dZ8OgS_I/AAAAAAAAAQ0/5VD9iEyJVwE07QY4hLrodrD69pAxJB6TwCLcB/s1600/tumblr_mxz4zoaBX01sm9s3lo1_400.gif"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Actual footage of my non-existent baby throwing my money out a window</td></tr>
</tbody></table>
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"Alright, Tracy. So maybe all of that isn't going to work out right now. Have you ever thought of, you know, just trying to see if you can have kids naturally?"</div>
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<b>Well, that was part two of my inner turmoil over babies.</b></div>
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I recently visited my ob/gyn, who tossed around the idea of sending me through another surgery to remove any endometriosis growth. Again, <u>this is a progressive and incurable disease</u>, so it's likely that a second surgery wouldn't be my last surgery. At this point, I'm not going in for one any time soon, and I'd like to put it off as long as possible. Since, you know, I'll likely be doing these for the rest of my life, unless an excision specialist suddenly moves to my state and is in my network.</div>
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The thing about surgery is that it <i>is</i> helpful when dealing with general endometriosis symptoms... but it can cause more fertility problems. Scarring = more blockage = fewer babies</div>
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It's why my first ob/gyn wanted me to get on Lupron as soon as possible - <i>to temporarily shut down my uterus, stop the endo growth and preserve my fertility for a little bit. </i>I won't get into it in this post, but Lupron is a total mess of a medication that I am not anxious to be put on. But DO Google it, if you'd like to learn about its heinous side effects.</div>
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<b>So now, my overall treatment was a question mark. Was I willing to sacrifice my future kids in order to have surgeries and ensure that I could lead a healthier, happier, less painful life? So that I could keep working, traveling and doing the things that I love? So that I could live the way I want to?</b></div>
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I mean, am I even in good enough health to be a mother? Do I have the strength and energy to do this every single day? Can I even go through with giving birth? My mom had pregnancy complications. What's going to happen to me, when I'm already at a high risk for more complications?</div>
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After considering all of this, I realized something. <i>"If these are major, life-altering concerns for me, I am absolutely not ready to have children."</i></div>
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I pretty much knew that I didn't want kids ever, even when I was young. I'm honestly terrified of being pregnant and giving birth. And I've had an aversion to small children ever since I was a small child.<br>
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For a little bit, I decided I would just wait until I'm 30 and then decide. But as my first ob/gyn reminded me, I don't have that luxury anymore. <b>I needed to decide, like, right now.</b><br>
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And this long conversation with myself confirmed my suspicions. I didn't want this for my life.</div>
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If I were wringing my hands over money and chance and statistics, then I wasn't ready to go through with any of this. At all.</div>
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At this point, I did what I usually do when life becomes too overwhelming. "<i>Annnnndreeeeeewwww!</i>"</div>
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I stomped over to my husband, flailed my arms in the air and dramatically detailed all of these concerns.</div>
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<i>"Andrew I know you want kids but I'm not sure if I do and I don't even really like them and we have so many student loans and we want a house and how can we afford fertility stuff if I need it and what if- what- what if I need more surgeries I PROBABLY WILL and I am really stressed out about this because we are not rich and GOD I HATE MY UTERUS WHAT IS WRONG WITH THE WORLD WHY DOES IT HATE WOMEN."</i></div>
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Andrew somehow found room in between my run-on sentences to say, "Why do you keep worrying about this kids thing?"</div>
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<i>"BECAUSE, Andrew, we have to plan ahead we have to have money we don't have enough money and $$$$$$$$$ and I just don't know what we're going to do and ALL THIS STRESS IS MAKING MY UTERUS HURT EVEN MORE and I have so many feelings right now and"</i></div>
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"Okay, but, I don't even really want kids."</div>
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"...wait. Really?"</div>
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In the span of a few short years, Andrew had gone from super wanting kids to not really at all, and I guess just forgot to tell me. The whole time, I'd been on the fence, leaning toward "Haha no," which served as the basis for a lot of my fertility-related stress. I knew Andrew had been alright with not having kids for the next five years, but I was so relieved to know he was with me on just not being parents ever.</div>
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<b>After talking everything over, we decided not to actively try to have children. But if a baby just so happened to appear, we would raise it.</b></div>
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<tr><td class="tr-caption" style="text-align: center;">Hey uhh someone please explain this gif to me.</td></tr>
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"You're going to change your mind, Tracy."</div>
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No, I'm probably not. And if I do, then we'll cross that bridge when we get there.</div>
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"Aren't you going to regret not having kids someday?"</div>
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I really don't think so. I think I'll be happy not having all of these concerns about fertility and money and my health hanging over my head. I already have enough to deal with, to be honest...</div>
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"Who is going to take care of you when you're old?"</div>
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I mean, having a kid isn't a guarantee they're going to take care of you when you're old... I'm sure I'll figure that out just fine.</div>
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"But raising kids is so much fun!"</div>
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Stop lying to me.</div>
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"Don't you think that's a little selfish?"</div>
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Good.</div>
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"You're not really a woman until you-"</div>
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Don't make me commit a crime right now.</div>
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And so, dear readers, I've reached that milestone in my life when a lady says, <b>"Dog babies before regular kind of babies." </b>I've decided not to have kids, and I feel great about it.</div>
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I chose to talk about it during National Infertility Awareness Week because I want people to understand the thought process that many women are forced to go through when determining if they can/should have kids. Honestly, infertility isn't something that's really talked about. I never heard about it in school, and I never thought I was at a risk for it.</div>
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<b><i>So we need to start talking about it.</i></b></div>
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It really sucks that infertility played such a major role in my choice not to have kids. And it's even worse that there are women out there who are just like me, except they really, really DO want kids. <i>And we truly need to do better as a country in helping these women become loving mothers. </i>I think everyone deserves that opportunity, regardless of how unreliable their reproductive organs are.</div>
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And if you are one of those women, please know that I am so deeply sorry you have to face infertility. Please know that I love you, and I hope you have a little baby to smother with love some day soon. Please know that I'm on your side, and that I think motherhood is an incredible, amazing thing, and you're going to be great at it.</div>
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And I'm so thankful that I can be at peace with my own decision.</div>
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<b>But of course, regardless of my decision, this won't stop people from asking me when I'm carrying on my husband's lineage.</b></div>
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Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com2tag:blogger.com,1999:blog-9150378473884064415.post-6528491763722606472016-04-10T19:25:00.003-04:002016-04-10T19:29:48.408-04:00To My Teenage Self<div class="separator" style="clear: both; text-align: center;">
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<a href="https://2.bp.blogspot.com/-7WOMteCOQBs/VwrYGU7VtfI/AAAAAAAAAPY/g77NftlUwSgcb-PRC-jkIkzbXVrerx4iA/s1600/196735_1002316913240_7583_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="" border="0" height="480" src="https://2.bp.blogspot.com/-7WOMteCOQBs/VwrYGU7VtfI/AAAAAAAAAPY/g77NftlUwSgcb-PRC-jkIkzbXVrerx4iA/s640/196735_1002316913240_7583_n.jpg" title="" width="640" /></a></div>
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Dear Teenage Tracy,</div>
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You are not crazy. You are sick.</div>
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I know. It really, really sucks. I'm sorry you're sick, and I'm sorry you'll never be cured. </div>
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But please take comfort in knowing that there's a name for what you have. For the sinking feeling you get when you realize your period has started, completely unscheduled. For the creeping sensation that happens right before the world gets hazy and pain begins to crush your abdomen. For the searing, crippling agony that radiates through your entire body, until you fall asleep from exhaustion. For what's kept you from countless classes, social events, obligations and a feeling of security.</div>
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<b>There's a name. And there are people who have what you have.</b></div>
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Your life with endometriosis <i>isn't going to be easy</i>, but I promise that a diagnosis will make it easier. You'll have a surgery and probably more than one, and your scars will just become another casualty of finding solutions to your symptoms. </div>
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You'll take a myriad of pills and have an equal number of doctors, poking and prodding you for the rest of your life. You'll know more about your illness than some of those doctors will, and you'll get frustrated and weed some out before you find one you can trust. You'll argue with insurance companies and become everyone's go-to person for medical advice. You hate doctors now, but you'll get used to them.</div>
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And you'll be shocked to know how much you'll talk about your uterus some day. You're going to <i>blog </i>about your uterus, and people are going to <i>read</i> it. I'm sorry. Please don't be embarrassed. It'll be great. I promise. You need this to hang onto your sanity.</div>
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<i><u>I should probably tell you that you might not have kids.</u></i> You might not be able to conceive on your own, and if you do, you might have trouble carrying that baby to a full term. But I want you to know that you're still going to fall in love and get married. And your husband is never going to hold your likely infertility against you. "Family" might not look the same to others as it does to you, but <b>it's going to mean the same.</b></div>
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You'll have to give up some of the busyness that you thrive on, so that you have energy to do the things you truly love. You'll have to prioritize reasons to leave the house, so that you can travel that weekend or attend a party without being exhausted or suffering a flare-up. Oh, and please start letting go now because <u>you're too young to be so stressed</u>.</div>
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<a href="https://4.bp.blogspot.com/-EmDs2FerW8Y/VwrdHQTZVgI/AAAAAAAAAPs/TQwxoRQG4ws4abuBKGIEB6pbb-wh0yQYQ/s1600/200472_1002237351251_8961_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://4.bp.blogspot.com/-EmDs2FerW8Y/VwrdHQTZVgI/AAAAAAAAAPs/TQwxoRQG4ws4abuBKGIEB6pbb-wh0yQYQ/s320/200472_1002237351251_8961_n.jpg" width="320" /></a></div>
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<span style="text-align: justify;">But you'll still have fun. You'll survive college. You'll move to a new state. You'll get a job (and another one!) in your field. You'll make new friends. You'll be in a band. You'll go a lot of places. You'll fall in love with writing again. You'll save up your energy so that you can unleash all of your emotions at a crap-ton of concerts and music festivals. You'll have a lot of incredible experiences <b>that not even endometriosis can take away from you.</b></span><br />
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I know you're probably scared now and wondering how you're going to do all of this on your own. But don't worry! <b><i>You're not going to be on your own.</i></b></div>
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You're going to have an amazing husband who will make you food or take care of chores when you're too sick and tired. Who will hold you and watch your favorite TV shows, even if you fall asleep in the middle of them. Who will sit in all of your major doctor appointments and listen to you rant about feeling like crap, despite the fact there's no distinct point to the ranting. Who will still think you're beautiful when you spend days in pajamas with no makeup.</div>
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You'll have a great family to be there for you, even though they live in another state. They'll pick up the phone and listen to you recite the doctor's orders. They'll adjust meal plans to accommodate your vegetarian diet. (Yeah, get this. You'll really love veggies some day. Right?!) They will be ceaselessly optimistic about your health, even when you're certain that there's nothing to look forward to. <i><u>They'll love you despite that.</u></i></div>
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You'll also have the sweetest little dog to curl up next to on the couch. Who will snuggle under your electric blanket and lick away your tears. Who will be a bigger support to you than most humans, even though she has no idea what's wrong.</div>
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Even your job will be great! You'll work for a cause you care a lot about. You'll have coworkers and managers who will understand that working from home is easier on your body. And when you need to take a day off for surgeries and doctor appointments, you'll have a great team you can count on. You'll even have work friends who read that uterus blog I mentioned and say nice things about it! Again, don't be embarrassed. This is all great!</div>
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And you'll have a ton of great friends who will support you from day one. <b>You'll even have friends with endometriosis</b> - both at home and across the country! You'll have shoulders to cry on and people who will listen to your probably-too-graphic recounts of your latest procedures. But they'll always be encouraging, even if they don't always understand.<br />
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<a href="https://2.bp.blogspot.com/-oGWMnkrwf5o/VwrdaIjeTWI/AAAAAAAAAPw/xONOptgjhS8JJ1jd_GEBOvQ5aeZHN_6yw/s1600/188219_1002731643608_9234_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://2.bp.blogspot.com/-oGWMnkrwf5o/VwrdaIjeTWI/AAAAAAAAAPw/xONOptgjhS8JJ1jd_GEBOvQ5aeZHN_6yw/s320/188219_1002731643608_9234_n.jpg" width="320" /></a></div>
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There <i>will</i> be people out there who don't understand. A lot of people will say cold and callous things. <u>And I <i>know </i>you'll take it to heart</u>. You'll wonder how people can be so ignorant, how they can't sympathize with something they can't experience. You'll become a feminist and a women's health advocate, so you better strap yourself in for a lot of Twitter rants. (You'll understand this later.)</div>
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But please try to disregard the criticism. Please know these people can't see. And please know you're doing everything right, <i>even if it doesn't always feel like it.</i></div>
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<b>Endometriosis is going to be one of the most incredible and most terrible things that's ever happened to you.</b> It's going to take away a lot that you thought was certain, but it's going to teach you so much about yourself. </div>
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You'll find out who really cares, what really deserves your attention and how you should take care of yourself. It's going to be a constant learning experience, years and years of trial-and-error. You're going to feel like you'll never get it right, never reach a point of serenity and understanding. But you know, I think those are myths anyway, and you're going to be okay without them.</div>
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Teenage Tracy, you can do all of this. It'll absolutely seem overwhelming at first, and sometimes, even years into your diagnosis, it won't make sense. You'll get mad and cry and want to give up, but you won't ever give up. You'll keep going - not just because you have no other choice, but because <u>it's who you are.</u></div>
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I'm proud of you already. And the best is yet to come.</div>
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Love,</div>
Tracy<br />
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<a href="https://1.bp.blogspot.com/-hcgVi3PIQoA/VwrdGJelyVI/AAAAAAAAAP0/9TYsD0fX8RwJ5B-LRlLz9NykxS1mdrqOg/s1600/200820_1002119908315_1238_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://1.bp.blogspot.com/-hcgVi3PIQoA/VwrdGJelyVI/AAAAAAAAAP0/9TYsD0fX8RwJ5B-LRlLz9NykxS1mdrqOg/s320/200820_1002119908315_1238_n.jpg" width="320" /></a></div>
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Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-62329850043888134082016-03-25T14:57:00.002-04:002016-03-25T15:15:35.004-04:00I'm Tired<div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Life motto.</td></tr>
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I really didn't want to write a blog post, but it's been a while. And I think I needed to be honest with myself and all of you lovely readers. I often try to hide frustration behind an irritating optimism that's constantly at war with my unrelenting realism. But I can't do it right now.</div>
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<b>Because I'm tired.</b></div>
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I'm just really, really tired.</div>
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I've been knowingly fighting endometriosis for about a year and a half, but it's truly a battle that I've blindly navigated for 14 years now. Even though there's a name for what I have, not a whole hell of a lot has changed in the long-run.</div>
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Yes, I have medications to haphazardly treat my pain and other inexplicable symptoms. Yes, I can find support groups of women who get me. And yes, I feel that I can speak more openly about my illness.</div>
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Okay, I guess a lot <i>has</i> changed. But in the end, regardless of what I know or what I do, <b><i><u>I can't win this war.</u></i></b> I really can't. There isn't a cure. There isn't a solution. I just keep going until I run out of options, I guess.</div>
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I've heard people say "Everyone has something" when it comes to sickness. Really? Every single 25-year-old has a chronic illness like this? Mmmm I don't think so. If that were true, I would think we'd be chatting about a global health crisis, not a "woman's" health issue.<br />
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I think everyone has a battle. But I'm about ready to throw in the towel with mine.</div>
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I recently became beyond overwhelmed with endo when my symptoms changed a month or so ago. My ob-gyn began suggesting surgery again, and I wondered if this was all I would ever have to look forward to - just surgery after surgery for the rest of my life. </div>
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And she started throwing around the term "interstitial cystitis," (IC) which is a common sister condition to my endometriosis and vulvodynia that causes bladder pain. So great. Now I have <i>another</i> incurable disease to add to my ever-growing list?</div>
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I was pretty convinced I didn't have IC, based on the symptoms list. It really seemed unlikely, and I was <i style="font-weight: bold;">definitely not</i> into the idea of getting a scope done without anesthesia. But I allowed my doctor to schedule me for an ultrasound to determine if I had a cyst or mass near my uterus that required immediate surgery.</div>
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To make a long story short, I don't. My husband, Andrew and I took a day off of work to sit in a hospital and be told that everything looked fine. Yeah, that <i>is</i> great news. But now, I have no resolution. No surgery. No other treatment.</div>
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<i>Sometimes, you just want answers, even if they're bad.</i></div>
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I do have a painkiller though! One that numbs my brain whenever I take it and piles more sleepiness onto my chronic fatigue. The first time I took Tramadol, it took me two hours to get through a really, really basic work assignment. It's been better lately, and I only take it as needed, so I really shouldn't complain too hard, I guess.</div>
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Oh, but did I mention that IC doesn't look so unlikely after all? In the last few days, my body has been like "OH! You think you know best, huh?" and given me a few other symptoms to keep the wheels in my brain spinning and lead me to wonder <b>if absolutely all of my organs are rebelling against me.</b></div>
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Dude, I'm complaining hard, and I'm not even sorry right now. I'm so, so tired. (That's my excuse for these poorly strung-together paragraphs.)</div>
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I'm tired of going in circles and thinking too hard. I'm tired of waking up tired, going through my day tired and going to bed tired. I'm tired of being in pain <i style="font-weight: bold;">while I sleep and while I'm awake.</i> I'm tired of arguing with insurance companies, explaining myself to everyone and fighting to be heard.</div>
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I'm tired of being brushed aside and being told I don't have it that bad. Because yes, you're right; there are countless people out there who suffer worse than I do.<i> But my body has rioted against me and robbed me of any control since I was a child. </i>I have a right to be angry, and I have a right to be tired.</div>
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Hah. Sometimes, when it's a weekend, and Andrew asks where I want to go out to eat, I explode with "I don't even care! I've made non-stop decisions all week! YOU pick!" Poor guy.</div>
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It's Endometriosis Awareness Month, and I've hardly participated because I'm just tired of fighting. Writing out my internal screed is hardly "fighting," but it's what I can do at the moment. I can be a voice, if I can't currently be a decision-maker or action-taker. I can use my tiny corner of the internet to tell people why they should give a crap about my uterus and other women's uteri or just chronic illness in general because <b>we shouldn't have to constantly knock down walls to get the care we need.</b></div>
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(I'm going to be honest. I've never heard of this nonsense happening to a man. But I know a <i>ton</i> of women personally who have similar stories to mine.)</div>
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So all of these feelings - and there are a lot more I haven't found the words to describe - just piled up and made me not want to write. I've actually spent a ton of time playing Pokemon and <i>not thinking</i> <i>at all</i> when I'm done with work. (Not to brag or anything, but I have a Charizard now.) I've cut down my gym time a little to make sure I'm giving myself space to be idle - something I'm not very good at doing. I've started spending a lot more time with Andrew and my dog and just being still.</div>
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When I'm feeling better, I'll return to my old routine. But I <i>have</i> to let myself have downtime. Even self-care has started turning into a chore and something I "have to do," rather than something I enjoy doing. So clearly, I'm doing this whole "care" thing wrong...</div>
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Anyway, I don't want anyone to feel sorry for me. I'm incredibly frustrated, but it'll pass. I'll find resolutions, and I'll be less tired. If I'm anything, I'm resilient. I am what Daryl Dixon would call a "little ass-kicker," even though I'm not a baby in the zombie apocalypse.</div>
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But for now, I want to own these feelings and recognize them. And understand that they're okay.</div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com0tag:blogger.com,1999:blog-9150378473884064415.post-15128631177928109062016-03-02T11:37:00.002-05:002016-03-02T11:37:42.207-05:00You Cut Me Open and I... Still Need Surgery<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-hdk5nvCec_M/VtcJpNfKiUI/AAAAAAAAANk/0Yy07uHS_AU/s1600/12795348_10204885002999893_6725060622900664364_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://2.bp.blogspot.com/-hdk5nvCec_M/VtcJpNfKiUI/AAAAAAAAANk/0Yy07uHS_AU/s320/12795348_10204885002999893_6725060622900664364_n.jpg" width="256" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chronic fatigue has clearly dulled my senses, so I bought reading glasses.</td></tr>
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(I didn't know what picture to use for this, so I used one of me in my new reading glasses. After 25 years of perfect vision, I think my eyes are finally going. Either that, or chronic fatigue has officially dulled my senses.)</div>
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First of all, <b><i>happy Endometriosis Awareness Month</i></b>, everyone! If you're doing anything really cool to promote awareness in March, let me know in the comments. I just submitted a letter to the editor to my local paper that I hope gets picked up.</div>
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I kicked off this month right by visiting my ob-gyn this week. Fun times all around! If you've been following my recent posts, you'll know that I haven't been feeling well lately. </div>
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I described my pain ever-so-eloquently to my husband, Andrew the other day as "It feels like someone took a needle and <b>just stabbed my uterus all over</b>. And then, they went to my right ovary and punched it a bunch of times. And then, they grabbed everything and squeezed it in their giant hands. And then, they probably poured rubbing alcohol over it or something, and now, I'm upset."</div>
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<i>It's obvious that I'm a writer.</i></div>
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So it was clear I needed to see my doctor. I actually tried to get in earlier than this week, to no avail. As I sat in the waiting room, I ran through all of my symptoms in my head, trying to rehearse what I was going to say. It's hard to remember everything when endometriosis has such a variety of side effects that, in my case, like to change from week-to-week.</div>
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<i>"Okay, so I have to mention the stinging because that's new. And if she asks how much pain I'm in, on a scale of one to 10 (ugh such a great question...), I'll say an eight. Oh, and I can't forget to say what happened two weeks ago because that was important. And..."</i></div>
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My ob-gyn walked in as her normal, chipper self. I appreciate her optimism in the face of my frustration, especially when the advice I got from my previous ob-gyn was <b>"Just go have a baby, and that'll fix it."</b></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-UlTONlusnuo/VtcP6FEwmgI/AAAAAAAAAN8/6cIwVs0mORE/s1600/giphy%2B%25281%2529.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://2.bp.blogspot.com/-UlTONlusnuo/VtcP6FEwmgI/AAAAAAAAAN8/6cIwVs0mORE/s1600/giphy%2B%25281%2529.gif" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Actual footage of my reaction to this suggestion</td></tr>
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My current doctor always seems to have some sort of idea or another thing we can try when my medication finally fails me. But when I began to describe my new symptoms to her, she frowned for the first time ever.</div>
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The first thing she did, unsurprisingly, was offer Lupron. I immediately shook my head and said, "No. I don't want to do that." </div>
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If you're unfamiliar with Lupron, it shuts down your uterus and sends you into a brief menopause to help manage endometriosis. Unfortunately, it comes with a slew of just <i style="font-weight: bold;">awful and horrifying side effects</i>. I know that's a bit of editorializing on my part, but I haven't heard a single good thing about this medication from anyone who has taken it. Most experience things like like bone pain, weight gain, additional pelvic pain (lolwut) and your traditional menopause symptoms. And yet, it's often offered as a cure-all for endo. (READ: It's not. Endo can still grow while you take it...)</div>
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Thankfully, my doctor respected my decision to not take Lupron. But she then said, "Well, I've been treating you for about a year now. And usually after a year, if medication isn't working anymore, I'd like to do a surgery."</div>
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<b><i><u>Surgery.</u></i></b></div>
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<a href="https://1.bp.blogspot.com/-LPCz1ugM3pI/VtcOSqjwPRI/AAAAAAAAANw/3BFsh2sawQM/s1600/giphy.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="179" src="https://1.bp.blogspot.com/-LPCz1ugM3pI/VtcOSqjwPRI/AAAAAAAAANw/3BFsh2sawQM/s320/giphy.gif" width="320" /></a></div>
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I had a feeling this was going to happen soon. But I had <i>really, really</i> hoped I could push off a surgery for a little while longer. My first (and most recent) one was when I was diagnosed in December 2014. So now, just slightly over a year later, my endometriosis has likely grown back and, judging by how I feel, spread.</div>
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My doctor noticed my discomfort and said, "Well, excision is the only real cure for endometriosis." ...wait, what? Yes! YES! I have a doctor who actually <i style="font-weight: bold;">recognizes that!</i> </div>
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If you don't know a lot about endometriosis care and treatment, it's often hard to find a doctor who actually recognizes the importance of excision surgery. (This involves removing growths and scar tissue while preserving as much of the surrounding organs as possible.) Many doctors recommend hysterectomies to women even younger than I am, which, believe it or not, <b><i>does not cure endometriosis.</i></b></div>
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Now, if my doctor is an excision specialist, I'm not aware because I'm dumb and didn't even think to ask. (But trust me; I will.) But just knowing she understood the value of doing this procedure made me feel a little better.</div>
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But still, is it <i>really</i> time for surgery again? Right now? I really thought I had another year or two to go.</div>
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<a href="https://2.bp.blogspot.com/-pWEOAxl3JH0/VtcQvFXwELI/AAAAAAAAAOE/2jngJ10WYF0/s1600/giphy%2B%25282%2529.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://2.bp.blogspot.com/-pWEOAxl3JH0/VtcQvFXwELI/AAAAAAAAAOE/2jngJ10WYF0/s320/giphy%2B%25282%2529.gif" width="320" /></a></div>
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I left my doctor's office with a prescription for the painkiller, Tramadol (FINALLY!) and an appointment for an ultrasound to see if I did need surgery right away. This would detect any major nodules, cysts, tumors, etc. that would need immediate removal and, if there are none, would help determine if I wanted to have surgery now. Also, she tossed around the idea of testing me for interstitial cystitis, which is a bladder condition that often accompanies endometriosis. I'm pretty sure I <i>don't</i> have it, but HEY! Let's check for <u><b>ALL THE THINGS</b></u>.</div>
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To be honest, I felt a little defeated after all of this. I mean, I got answers and a prescription for a painkiller, which I've never, ever been given. (I've been fighting pain up until this point with Aleve and heating pads. It's super, sometimes, rarely effective.) So <i>that's</i> good!</div>
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But it's so, so frustrating to know that virtually the one and only treatment for my disease is surgery.</div>
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So, what now? I have one surgery a year for the rest of my life? <i>That's</i> expensive. And diminishes my already decreasing chances at having kids, if Andrew and I so choose.</div>
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And on top of that, <b><i>what will that mean for my quality of life, long-term</i></b>? It's a minor surgery, yes, but if I end up having five, six, seven surgeries some day, will I be able to do things the way I want to? Will I be able to keep up with my fitness and enjoy going to the gym like I can currently? I can live with a scarred-up abdomen, but will I eventually regret the internal scars these surgeries leave?</div>
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I never thought this is what I'd end up doing with my health and my life. But as my mom said, <b>we do what we have to do for our health</b>. And I really, really shouldn't feel sorry for myself, but ugh, seriously? I'm 25, and I have a lifetime of this ahead of me?</div>
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It just <i>sucks</i> that this is all we have to offer young women. "Sorry about your uterus. Here's something that will help for a little bit and then not help anymore." Sure, if I see an excision specialist, it would be more effective than having just any ob-gyn perform my surgery. But will my insurance even cover a specialist in another state if my state doesn't have one? And I mean, I'll eventually have to do this again, right? Is it worth the money?</div>
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And of course, I don't have good answers to these questions at the moment.</div>
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Right now, I'm <b>desperately trying </b>not to get too far ahead of myself. I have great health-care, a decent health savings account and an ob-gyn who believes in me. That's a lot better than many women out there have because yay, endometriosis is poorly researched. </div>
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So I'm taking it a day at a time. I'll face this ultrasound, and then I'll go from there. And if it involves getting frustrated or angry or crying, then I'll let myself have my moment, pick myself up and do what I have to do.</div>
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At the end of the day, I just want to feel well. I know I'll never be "normal." <b><i><u>But I'll settle for "normal enough."</u></i></b></div>
Anonymoushttp://www.blogger.com/profile/08004487109957520056noreply@blogger.com126