Still Sunflowers: My life with endometriosis: symptoms

Damn, Girl, You Sleepy

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.

It's like Inception.

I need one of these.

Actual footage of my tantrum

As you may know, that ongoing sleepiness led me to finally seek help from a specialist. I endured a miserable sleep study 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..."

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.

If your dog doesn't even have faith in you, I mean, who does, man?

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.

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).

That's about it. Nothing else sounds good, and if you put it in front of me, I immediately lose my appetite.

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.)

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.

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...

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.

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.

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 Yoga with Adriene, fyi.)

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...

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.

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.

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.

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.

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...)

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.

Anyway, that's a tangent I'll probably get to in another blog post. And one I don't feel like dissecting right now.

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.

9:49 PM
0 Comments

My Very Sleepy, Not-So Immune System

symptoms

Kylo Rennnn!

Ladies and gentlemen, let me tell you the story of my life as a sleepy person.

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.

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.

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.

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.

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.

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.

But eventually, about three years ago, I got to the point where my life went like this: Wake up. Go to work. Come home from work. Nap. Wake up. Eat dinner. Nap. Wake up. Crawl into bed. Sleep. Repeat.

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.

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.

That lasted for just a little while. And then, the pain crept back. And the fatigue.

And I noticed I needed to nap every day again. And I realized I had trouble remembering things. And I almost crashed my car because I fell asleep at the wheel.

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."

That "solution" wore off, too, eventually. Nothing worked anymore.

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!)

I. tried. everything. And nothing changed.

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.

So she referred me for a sleep study.

(SPOILER ALERT: 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.)

(You know. Just didn't want to disappoint you guys.)

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.

If you're considering a sleep study, know this. YOU WILL HAVE MORE PAPERWORK THAN YOU EVER THOUGHT POSSIBLE OH MY GOD.

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.

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..."

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."

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:

"Do you snore?"

No.
"Are you sure?"
Yes.
"...are you really sure?"
YES.

"Okay. You don't have sleep apnea. Maybe narcolepsy?"

"You should have a sleep study."

Great.

(He was actually more helpful than that, but this story is getting long.)

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.

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.

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.

I also learned that narcolepsy is sometimes thought of as an autoimmune disorder, like endometriosis often is. That was a lightbulb moment for me. Once you have one autoimmune disease, you tend to have, like, twenty. So maybe narcolepsy was a reasonable diagnosis, even though I hesitated to clear the sleep medicine office to pass along the sleep study to my insurance company.

But I was desperate. I was getting more and more tired, and I needed answers.

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.

Here is my "first day of school" photo:

Note the sad dog in the window...

My sleep study would involve sleeping a night at the office and then a narcolepsy study the entire day following.

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.

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 really 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.

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.

But this was just the beginning of my study. The next part is what I later described as "a special kind of torture."

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.

Guess who didn't get two of those three essential things. Yep.

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?!

Anyway.

To assess narcolepsy, I had to take 15-20 minute naps every two hours. In those two hours, I could not 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.

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 NO HGTV or Food Network.

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.

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.

At 1 p.m., I got Jimmy Johns. This is important to mention because I love JJ's.

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.

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.

"Yes, girl, you deserve me."

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.

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.

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..."

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 properly, it's been a tough thing to deal with.

It's like "Oh, okay. I can't even have that one thing that my body was doing right. THANKS."

So I will hopefully have the results soon. And I will update with a much shorter blog post.

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 my Facebook page.

10:54 PM
0 Comments

Fatigue and the Fear of Being Found Out

symptoms

Oh, look! Is Tracy writing another blog post about being tired?

Yes. Yes I am. But I promise there's more to this one than the fact that I'm so bone-achingly exhausted lately.

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?"

My expectation of my care:

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.

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.

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!

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.

"So she can see you next month at 8 a.m. And that's it. Until the next month."

"Haha! Good one! No."

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 just 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...

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.

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.:

I've been tired for a really long time.
I can literally sleep anywhere, at any time, all the time.
I can't drive more than like a half hour to an hour without falling asleep.
I'm pretty sure I'm going to die because of the previous symptom.
I wake up in pain all over my body, and it's hard for me to even get out of bed.
I nap at least once a day because I can't function otherwise.
I can't remember anything, and my memory is usually a steel trap!
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.

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 has to be a way to fix this."

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...

This could be us, but a frog playing a banjo still wouldn't keep me awake.

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."

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.

And so, my PCP passed on the diagnosis torch to the second runner-up...

(I don't know what they're really called. So he will now be called Sleep Doctor.)

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.

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.

"Maybe you have narcolepsy."

(gif of me shrugging, throwing my hands out to the side and saying "Sure.")

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.

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.

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:

"I'm awaaaaaake! I'm not awake."

***

This leads to part two of my blog post: my fear of being "found out." I've tied it to this episode because I can no longer hide the fact that my illness is affecting my daily life.

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 really is in it for the long-haul.

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, the more I'm terrified that people will "find me out."

What do I mean by that?

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 so normal, despite the face that you have a chronic pain condition."

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.

But when everyone finds out that, oh shit, Tracy really is sick, then what? What will I lose? Who will I lose? That's what my fear of being "found out" is.

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.

I know that both existences are my reality. But will other people understand that?

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.

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 will 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.

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. 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.

But I'm always, always going to have this fear.

4:03 PM
0 Comments

Learning to Stand Again

symptoms

This picture was taken during the 60 minutes I actually spent outside of my house on Friday.

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.

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.

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?!

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.

Actual footage of me at that event

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.

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.

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.

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.

Like, for example, put on my own makeup. Or dry my hair. Andrew is unfortunately useless in these departments.

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.

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.

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.

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!

So sad and homeless! #adoptdontshop

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.

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.

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.

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.

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.

Now if only he could take care of that pile of laundry and dirty mirror...

10:54 AM
0 Comments

And For My Next Trick...

symptoms

On good days, I get to be a rock star.

I've heard before that chronic illness is a full-time job, except without pay or any sort of benefits whatsoever. I'd buy that. In fact, you get a nice assortment of careers with endometriosis: detective, researcher, advocate, dietitian, wellness expert and, of course, your own personal life coach.

But I'm here to talk about a specific job that endometriosis has gifted me: illusionist.

It's not even just tricking everyone around me into thinking I feel well when I absolutely don't but absolutely have to. It's also tricking myself into believing everything is fine when everything isn't.

Do not try this at home.

Lately, my role as an illusionist has been a 24-7 commitment. As I mentioned a blog post or two ago, my symptoms seem to have changed, and since I won't see my doctor until next week, I've been doing my best to cope. Or, you know, straight-up ignore said symptoms.

I've recently started experiencing pain before I even wake up, which is just downright cruel. Shouldn't that be the one place endometriosis leaves me alone? I mean, I didn't even know this was a thing.

But sure enough, around 3 a.m. every single night, I start to hurt. And then I wake up in the morning and realize it's actual, real-life, happening-right-now pain, not just some terrible dream pain. But I crawl out of bed - with some help from a dog who really wants to go outside - and tell myself that everything is just peachy.

I won't walk you through each and every one of my new symptoms, but I'll say they've been really unpredictable. The hardest to deal with, as I often say, is the fatigue. I've faced that for a long while, but it's been exceptionally irritating lately, especially when I just don't have the mental energy to even talk some days. (AND I LOVE TO TALK.)

Despite this uncontrollable fatigue, I often try to trick my body into thinking we have all the energy in the world! And that even on days when every flashing red light is going off inside of me, hey, everything is fine. Because we have things to do, and I don't have time for this.

Lately, that's shown up at the gym. I've been working really hard to stay in shape, endometriosis be damned, with varying results. Part of this is an effort to stave off some of the pain, manage my other symptoms and also keep my scoliosis from getting worse. It's also because I'm delusional and believe that even with endometriosis, I can have INSTAGRAM-ABLE ABS.

Oh hey, Thor... <3

I'm pretty happy with where I am right now, but it's taken a WHOLE LOT of work to get there. Pain and fatigue have disrupted my gym routine countless times, and when that happens, I'm pretty hard on myself. Even though I can't control my disease, part of me still likes to think I should be able to do so.

At my worst, as I've mentioned in previous posts, I drag myself to the gym when I don't feel well. I try to work out whenever I feel okay (like above a 6 or a 7 on a scale of 1 to "I'm definitely dying"), so that I can balance out those bad days. But sometimes, my illusionist self thinks it can do more than it actually can.

This happened a week or so ago. I was frustrated with a few different aspects of life to begin with that day, but I insisted that my husband, Andrew and I go to the gym anyway. I wanted to blow off steam, I hadn't done a great job of exercising the weekend prior, and I needed something I could control to regain my sanity.

Joke's on me. I don't "control" anything!

About ten minutes into being on the elliptical and watching my beloved Property Brothers, my brain went into "screw it" mode.

[Why can't I find a gif of Jonathan taking a hammer to a wall or something?!]

"What am I doing here?" I thought. "Why am I doing any of this? It's pointless. As soon as I feel sicker, I'll have to stop working out, and my body will go right back to where it was. None of this is worth my time. I can't manage my symptoms, my disease is progressive, and it doesn't even have a cure, so why am I bothering?"

I realized I didn't want to be anywhere except curled up in a ball at home. I got off the elliptical and went to find Andrew.

When we got home, I broke down into tears. I'd had a stressful week to begin with that was further complicated by just how awful I was feeling. I ranted to Andrew how I didn't want this to be my life, how I was so scared this was as good as I was ever going to feel, how I knew there were only a few treatment options even available to me, and how eventually I'd run out. How I'd need to go into surgery again at some point, how that wouldn't even matter because the endometriosis would grow back again, and how oh my gosh if we want kids some day how will we ever afford fertility treatments or adoption or anything.

This quickly led into my next spiral, which went something like this: "I don't want people to think I'm sick. I don't want to look sick or be sick or anything. I don't want it to get in the way of me doing things that I want to do. I don't want to disappoint people or let them down or miss out on things or-"

Andrew interrupted with "Why won't you just accept that you have a chronic illness?"

He wasn't accusatory or mean or exasperated at all. He said it in the most loving and kind way imaginable. By saying this, Andrew told me that it was time for me to give myself permission to be sick.

You would think that I'd done that already, given this blog and how vocal I am about endometriosis. And when I'm mentally at my best, I do a good job of accepting my illness. But when things get bad, I start to resent my body, as if being angry will change my circumstances. When, really, it probably just puts more stress on my body and makes me feel worse.

The truth is that my inner illusionist tries its hardest with myself. I try to outsmart my own disease, forcing my brain to ignore what it needs some days so that I can travel, run errands, exercise or sometimes do really dumb, pointless things just so that I feel personally accomplished that day.

I've never been good at allowing myself to rest or take any sort of break. Just look at how many days off of work I don't take, and you'll see that I do not make time to just relax and exist and, you know, be a person. I see it as idleness or laziness, rather than an essential part of managing my illness and my sanity.

If you've been following my blog for a bit, this isn't news. It's a constant struggle of mine, and I'll probably come back in four months (or less) and write a similar blog post to this one. But hopefully by typing it all out, I'll force the illusionist to take a vacation and let my body take its own mini holiday.

In chatting with one of my college friends the other day, I reminisced about an old redheaded heartbreak. (There are actually two from my college years. This one is the latter of the two. Hah.) I said, "It's good we never worked out. I really don't think he'd ever accept my illness." But how can I expect other people to accept and understand endometriosis when I don't even let myself do it, most days?

This isn't a message to me and other people with chronic illness to just give up on ever feeling well, forget about going outside and stop trying to take care of yourself. Not at all. This is permission to feel like complete crap. Permission to spend days in a row on the couch. Permission to cry and be frustrated and then watch HGTV re-runs all day because endometriosis is terrible. Permission to let yourself be sick. And permission to do all of that without guilt.

You spend so much of your time managing your chronic illness to begin with. Let's cut out the magic tricks.

And here's another gif of attractive men to send you off.

10:47 AM
0 Comments

Turn and Face the Strange

symptoms

Why is my body deformed?

If you want proof of how quickly endometriosis can turn around and bite you, look no further than this photo of me jumping in a trampoline park last weekend. I also kind of look like an overjoyed demon, so that's cool. I had woken up feeling pretty okay that day and decided to be an adult with my husband, a fellow endo sister and her husband by jumping on trampolines all day.

Fast-forward 24 hours later, and I was down for the count. I thought that maybe it was just from trampolining for an hour, which (shocking to me) kind of feels like running a marathon but jumping all of it. My husband and I made the mistake of buying a two-hour pass the first time we went to this place...

But one day turned into two... which turned into a full week of pain. And then I realized something. This pain feels different than usual.

Okay, don't panic. Take a symptom inventory.

Stomach? Ehhh same ol'.

Left ovary? Also about the same, although it hurts a little more than usual.

Right ovary? Ouch. Owww owww it's radiating down my leg. Uhhh that's certainly new...

Rest of the uterus? WHY DOES MY ENTIRE UTERUS HURT?! ALL OF IT?!?

My endometriosis was found on and around my left ovary and burned off fairly easily. But since I did not see an excision specialist, there is a high likelihood of recurrence and of the endo spreading. I'm honestly not even sure if there is an excision specialist in my state... But if you happen to know a good specialist in the Midwest, hit me up.

I knew that, which is why I'd been holding my breath ever since my one-year endo anniversary came and passed. I looked at myself as a ticking time-bomb, and it's partially why I've devoted so much effort and energy to working out. If I can stave off the pain - which exercise often can do - then maybe I won't need another surgery. At least not this soon.

So anyway, up until recently, my pain had mostly hung out around my left ovary with occasional pain in other places. Oh, and with pain shooting down to my left knee. That leads me to believe there's a spot putting pressure on my sciatic nerve, but hey, I'm no doctor. I just diagnosed myself on Google...

Another fun fact. Endometriosis can spread to organs outside of the reproductive system. Oftentimes, implants accumulate on the bladder, bowel and other nearby areas. Without subjecting you to gross details since I do that enough, I'm pretty sure the endo has spread to my bowel.

What really sucks about endometriosis is that I can have a laundry list of symptoms, and I still will have absolutely no idea what's going on until someone cuts me open. As I learned the first time around, ultrasounds and pelvic exams will generally reveal absolutely nothing about the present state of my condition. Only a laparoscopy.

So I spent a lot of the week laying on the couch, trying not to feel sorry for myself. But finally, I broke down last night after feeling too crappy to make it to the gym for the third or fourth time that week. I didn't cry, since at that point I was too cranky to do so, but I threw a pillow off the couch, dramatically flopped my arms over my eyes and so eloquently ranted:

"Ughhhhh WHYYYY is this disease so stupid and pointless?! It makes NO. SENSE. A lot of illnesses are just because your body is confused, it's like, (insert high, squeaky voice) 'Ohhhh! I'm just trying to make new things for you because I'm a good body, and I think you need this!' But NO! NOT THIS ONE. It's seriously the dumbest disease EVER. It's all, 'Here! Have some endo because I don't want to be a normally functioning uterus anymore! I want to be in pain ALL the time, and also, let's NEVER make babies and be forced to pay a crap-ton of money to making sure I function like a normal organ should! IT'S. SO. DUMB.'"

My supportive husband listened sympathetically while trying not to pay attention to the much more interesting and well-written show that was on TV. I couldn't blame him. I was being a bit over-dramatic. There are plenty of people I know who are sicker and have more to complain about than I do, although I never like it when people say that about their own conditions to me.

But I had enough that week. I was exhausted. It was a fight to get out of bed every morning, and I'd probably have kept sleeping if it weren't for my dog gnawing at my hair and pawing my face. And I had work obligations that suddenly became harder to deal with, now that my changing symptoms were taking over the majority of my mental energy. (I also was pretty pissed about my state defeating a tampon tax exemption that morning, but that's another story for another day...)

I'm an impatient person sometimes. I get frustrated when my emails aren't answered within minutes. I yell at traffic jams, and I roll my eyes very obviously when people walk too slowly. I also apparently belittle my uterus when it's not being a productive member of the House of Tracy. I don't deal well with ambiguity, and I hate not having all the information that I need.

But that's the reality of endometriosis and other chronic illnesses. In fact, this blog post doesn't have a happy ending where I learned something about myself and resolved to be more positive and a better sick person. I'm still angry. And it's okay to be angry, as long as you don't stay there forever.

So I'm getting ready for this weekend and next week, picking up some disposable heating pads and hoping that Aleve will get me through until my ob-gyn appointment because it's the only painkiller I have. It's hard to stay strong when the odds are so stacked against you, and you've been "strong" for way too long. But sometimes, you don't have a choice. You just keep your head down and power through.

And if that fails, that's why there are electric blankets, ergonomic pillows and naps. And David Bowie records.

Pages

Damn, Girl, You Sleepy

My Very Sleepy, Not-So Immune System

Fatigue and the Fear of Being Found Out

Learning to Stand Again

And For My Next Trick...

Turn and Face the Strange

Enjoy the Silence

Facing the Daily Can't's, Maybe's and Not Today's

It's Working! It's Working!!! ...Wait, Nope. It's Not.

About Me

My Diagnosis

My Treatment

Like Me

Subscribe to Me

Recognition

Blog Archive

Popular Posts

Like us on Facebook

Pages

About Me

My Diagnosis

My Treatment

Like Me

Subscribe to Me

Subscribe to Me x2

Recognition

Blog Archive

Popular Posts

Like us on Facebook