Still Sunflowers: My life with endometriosis: chronic pain

26 Going on 66

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.

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."

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."

It's not too late to buy me this for my birthday.

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.

Other days, I have to sit in a chair to make dinner and take breaks in between loads of laundry.

Even other days, it's hard to stay awake for two consecutive hours. Or move. Or simply exist.

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.

The fact of the matter is that I don't 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.)

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.

Thanks, bro.

There's a great song by Ben Folds that's always connected with me called "Learn to Live with What You Are."

I'm not saying the effort is a waste of time - but I

Just love you for the things you couldn't change

Though you've tried

These hours of confusion they will soon expire

Like everything

Does

There's never gonna be a moment of truth for you

While the world is watching

All you need is the thing you've forgotten

And that's to learn to live with what you are

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.

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.)

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™, 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.

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.

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.)

it me.

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,

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.

10:02 AM
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Time to Stop Saying 'I Don't Want To'

chronic pain

Wow. I knew I hadn't blogged in a while, but I didn't know I hadn't posted anything in May.

To be honest, endometriosis and I haven't been on good terms lately. We're fighting. Hard. 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.

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.

And I knew that, inevitably, I'd have to confront the way I've been feeling because, shockingly, ignoring your medical problems rarely ever gets rid of them.

But even knowing this, even having years of experience in juggling symptoms, my recent response to handling my medical care has mostly been "I don't want to."

"I don't want to get tested for interstitial cystitis. I don't want to have a scope done. I don't want to go through more treatment."

"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 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."

Don't worry. I was driving myself nuts, too.

I think this is a lovely insight into my current state of mind: an interesting mix of me being totally exasperated with the state of my endometriosis, just a little under two years since my diagnosis, but me also thinking that I clearly know everything about endo now since I've been sick for so long.

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.

Because I can see into the future and know exactly how things are going to play out.

Mmhmm. Yep.

Since I'm a psychic and I have nothing to learn from this world, I proceeded to be a complete pain in the ass 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.

How does the quote go? "If you keep doing what you're doing, you're going to keep getting what you're getting." Or something like that.

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.

I think I finally had enough of myself because I asked a fellow endo sister for the name of her physical therapist.

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 a lot, but it was time to bring in someone who actually knew what they were doing.

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.

Me, upon greeting my physical therapist

I only had an introductory appointment, but I can already tell that I like her better than my last physical therapist.

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.

Somehow, through that experience, I ended up feeling like my body wasn't my own. 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.

Probably could have used another type of therapy at the time, now that I'm thinking of it...

Now, I feel like my PT and I are figuring this thing out together. 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."

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.

Instead of viewing it as "Here's a way for me to feel better and be happier," the entire experience quickly turned into "I'm broken, and I need fixing."

No wonder I felt burnt out after a few weeks.

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.

(AND my physical therapist said I had a very strong six-pack muscle, so I'm already feeling pretty great about myself.)

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.

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.

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.

That's the part that really sucks about endometriosis. You really don't know what's going on, unless you cut someone open. And like I said in an earlier post, that's led me to wonder, "Is this it?" Just a lifetime of surgeries?

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.

And if I'm not getting answers, I have to keep looking. Stopping won't get me anywhere at all.

Hopefully, I'll be compelled to write more on this blog, despite being so frustrated and tired.

I'm leaving this gif of a beautiful Benedict here to encourage me.

8:35 PM
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The Sick Games

chronic pain

This picture was taken when I was the sickest I'd ever been...
and I still went to Bonnaroo and Third Man.

This is a topic I've wanted to discuss for a while, but I haven't really found a delicate way to approach it. I still don't think I have, so everyone hang on.

Chronic conditions like endometriosis are often called "invisible illnesses" because you usually can't tell that the person is sick by looking at them. I included a picture of me as an example. This was taken in June 2013, while I was still searching for a diagnosis and unable to eat anything or even go about my life without excruciating pain.

However, I'm standing and smiling outside of Third Man Records in Nashville en route to Bonnaroo because I was not missing Paul McCartney for the entire world. Unless you took notice of how much weight I had lost over the previous few months, you probably would have had no idea that I was sick.

That's the nature of invisible illnesses. You become really talented at faking it. You learn to ignore certain symptoms and discomfort and push forward, despite the fact that your body is slowly smoldering from the inside out.

Some people fake better than others. Some aren't able to do that due to the severity of their symptoms on that particular day, week, month, etc. But at the end of the day, no matter how "invisible" your invisible illness is, it's still there.

With these invisible (and sometimes not invisible) illnesses comes something that I like to call "the sick games" - the constant competition to figure out who truly is sickest of them all.

"We're on fire so we're, like, way sicker than you."

My sick kid cred was recently challenged because I'm able to go to the gym frequently. A few people made remarks like "LOL I wish I could even walk upstairs without being in pain" and "That must be nice to feel well enough to even think about exercising." They seemed to insinuate that maybe I didn't really feel that terrible after all.

It stung a little because I didn't understand why that somehow invalidated my sickness. This was just my experience. Yes, I know not everyone is well enough to go to the gym. So... I'm sorry?

I'll admit it. I don't hurt as severely as a lot of people with endometriosis or other chronic pain conditions. Recently, my pain level has been fairly low, but I'm well aware that can and will change soon enough. Endometriosis is a progressive disease, so right now, I'm treasuring the ability to work out, and therefore, I go to the gym as much as I can.

And maybe someone else can eat meat without going into a pain coma like I do. Maybe someone can crawl out of bed in the morning faster than I can or not fall asleep in social situations or have a not-painful love life - all of which are major, ongoing struggles for me.

But I have to ask: Why does any of this matter?

The thing I love about illness support groups is that you have the opportunity to share your experience with other people who personally understand what you're going through. People who understand why "I did it! I went grocery shopping today!" is such a big accomplishment. Or why finding a doctor who listens to you makes such a huge difference in your general opinion on life.

And the thing I hate about support groups is that, if they're not properly moderated, they can turn into an endless cycle of negativity and "I'm way sicker than you."

"My pills stopped working today, and I'm really frustrated."
"Oh yeah?! Well, my pills haven't worked in three weeks."
"Yeah, well, my pills haven't worked in months, AND I have new symptoms!"

"So? My pills have never worked, and also, my house is currently being invaded by lizard men who look like Ted Cruz."

Okay, sorry, I just... wanted some encouragement.

This isn't exclusive to illnesses like endometriosis. My mom has been fighting cancer for the past five years, and she frequently hears conversations like this while waiting to get chemotherapy.

"What stage cancer do you have?"

"Stage one."

"Oh, that's nothing! I was diagnosed with stage four cancer, and I also have this other disease on top of it!"

Why are we fighting like this? What does it accomplish? Why do we want to be sicker than other people? And why do we want to diminish the experiences and feelings of other people with diseases that we have and that we're trying to raise awareness for?

If there's anything I've learned from observing the state of our world over the past year, it's that little conflicts like this only further divide us and divert us from our goals. Fighting between sick people only makes it harder for other people with our conditions to share their stories, advocate for their disease and feel accepted and understood. And as I'm sure you know, readers, those three things are hard enough to do on their own.

The fact of the matter is that there will always be someone "sicker" than you. There will always be someone who hurts more, faces bigger hurdles and experiences more problems than you do with your disease. But you shouldn't feel guilty or invalidated because you aren't as sick as someone else.

I don't want anyone to have endometriosis. If I had it my way, this stupid, pointless, illogical disease wouldn't exist, and I wouldn't have to rant about it on a blog because not enough people know it's a thing. I don't see a point in making sickness and pain a competition when everyone is unhappy and everyone hates it.

So I'm not going to play the sick games. I'm not going to fault someone who doesn't hurt as badly as I do, and I'm not going to feel bad that I'm not as miserable as other people. I'm not going to compare my symptoms to others' and make statements like "Yeah, [insert illness] is bad, but I heard you don't hurt nearly as bad as you do with endometriosis."

Because we're all in this together. We're all spoonies. And that means we need to uplift and encourage one another. In a group of people who already feel so alienated and different from "normal," we can't further isolate each other or turn this into a competition.

So let's all resolve to end the sick games.

And now this damn song is in my head help me please.

11:47 AM
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A New Year with Endo

chronic pain

Juno and me, partying it up last New Year's Eve

If you read my last blog post, you'll know that I was at my parents' house for two and a half weeks, helping take care of my mom after a major surgery. I came home Sunday night, and my little family is finally reunited! Mom's at home now and doing really well, but she still has a long road ahead of her, recovery-wise. Thank you to those of you who have kept her in your thoughts and prayers. Please continue to do so. :)

So it's been a little while since my last blog post, and I thought I'd get a head start on the obligatory New Year's post. Since endometriosis is still incurable last I checked, 2016 will be another year with endo and all of the challenges it brings.

This is also a very unpredictable disease, so it's hard for me to put together some cheesy New Year resolutions for my health aside from "just keep going," which seems to be my overall life motto...

(Actually, I recently decided that this is my motto for 2016...)

Endometriosis has a very high recurrence rate after ablation surgery, which I had in December 2014. (If you're unfamiliar with the term, it involves burning off problem areas, which are then ideally healed by scarring. Unfortunately, some endometriosis cells will almost certainly be left behind to regrow.) I can't seem to nail down a good stat for this, but most of what I've read says recurrence rates can be as high as 45 percent a year after ablation.

This is why excision is considered the best option to treat endo since it cuts away lesions to ensure they are completely removed from the uterus. But it can be difficult or impossible to find an excision specialist in your state. (Mine doesn't have one, to my knowledge.)

Even now, I can tell that my pain has changed over the past few months. My endo was found around my left ovary and Fallopian tube, but my daily pain inventories have led me to suspect that some of that has migrated to my right side, too. As I've also mentioned before, I frequently feel pain shoot down to my left knee, leading me to think that maybe there are a few spots putting pressure on my sciatic nerve.

Due to poor research and treatment options, endometriosis unfortunately involves a lot of guessing games for the women it affects. My husband, Andrew and I were recently trying to plan out the next five years, and the topic of starting a family came up. Right now, we're both ambivalent about kids with me leaning toward "noooo thank youuuu." We haven't tried for kids, so it's not a guarantee that I can't naturally conceive.... but with endo, it's highly likely.

Andrew's life motto (since we're all about them this blog post) always seems to be "We'll cross that bridge when we get there." But I pointed out that we can't do that with endometriosis. We can't wait until I'm 30 and then suddenly say, "OH! We want kids now! Oh wait. Tracy's infertile, and we didn't save any money for adoption or IVF..."

So we have to guess that I'm infertile. We have to err on the side of caution and start putting away money for fertility treatments or adopting a child. And if we go with the former, we're going to have a long road ahead of us that may possibly go on for years and years.

(And hey, if we decide we don't want kids, European vacation!)

So 2016 might look a lot like 2015 did for me. My year was full of trial and error by testing out medications, diets, exercise routines, home remedies and everything in between. Now that I have one year with endometriosis under my belt, I like to believe I have a solid foundation for managing my disease. But as I've learned, this condition loves a good surprise.

I was out with some friends last night, and someone asked me if I had my endometriosis "under control." I said that I did for the most part, but in the back of my mind, I was laughing. "Of course everything's under control! Please disregard the fact that I was late to dinner because I had to run out and get some ThermaCare heat wraps from Kroger so that I could survive the evening..."

As soon as I think I have everything figured out, my medication fails, or my symptoms change, or I start bleeding out of nowhere, even though I'm NOT SUPPOSED TO HAVE PERIODS ON CONTINUOUS BIRTH CONTROL DAMMIT.

With a chronic illness, you never really feel like you're in control. It's easy to feel like a slave to your body, constantly responding to its demands and anticipating its needs. It can suck any enjoyment out of everyday things like eating a meal or taking a long walk. It ruins plans and sometimes even keeps you from planning in the first place.

Looking forward to 2016, I'm sticking with what I know. My diet works. My medication (currently) works. My gym routine works. And when something stops working, I won't blame myself. I'll understand that I did everything I could, as best as I could. And it doesn't mean that plan B won't work, even when treatment options are limited for a disease that will certainly progress and change.

And for the things I don't know, I will be patient. I will read, research and ask questions. I'll collaborate with those involved in my care, and then I will make the best guess that I can. And I won't be too afraid or proud to go back to the drawing board when I need to.

All things considered, 2015 was a good year. And I think I'm ready for 2016.

And if I'm not, I'll just watch this gif for a few hours and then feel better...

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26 Going on 66

Time to Stop Saying 'I Don't Want To'

The Sick Games

A New Year with Endo

Love is Asking for Help

Can You Help Me? I'm Bent.

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26 Going on 66

Time to Stop Saying 'I Don't Want To'

The Sick Games

A New Year with Endo

Love is Asking for Help

Can You Help Me? I'm Bent.

About Me

My Diagnosis

My Treatment

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