Before I do anything else, I’d like to take a moment to appreciate that I’m not recovering from a bronchoscopy today because I didn’t need one yesterday because my body handled that lung nodule like a boss.
I moved my appointment with Dr. Oncology a couple of weeks out, and I will use this time to be kind to my guts.
I dealt with another 5-day round of IBS-C this week, which was awful. But! I had a few days before that where I felt slightly better than what has become my usual. So I will see about extending my not-too-awful streak.
Dr. Pulmonologist said that my lung function test results point to anatomical breathing restrictions caused by deconditioning. I don’t have asthma or COPD or anything, so losing weight and exercise would probably help me. I will try.
Diet and exercise can be an excuse for some doctors not to listen, but I’m confident that’s not the case here. I continue to believe my most unwieldy medical issue is anxiety, and it’s physical manifestations are out of whack. I’m working on that, but it’s not like there’s an overnight cure.
There are a couple of specific things that plague me. I obsessively plan now. I’ve always been the kind of person that checks out the menu at a new restaurant a day ahead, but now I plan what I will wear to the doctor’s office, who will drive me there, what I will say, how much water I can drink beforehand to have decent veins but not have an overactive bladder scare.
You get the idea. It’s too much. And the kicker is that I’m too physically disabled to write it all down and I don’t trust myself to remember. That means I obsess AND then I rehearse it all. It’s bad news, but it’s unnecessary. I don’t have to do it. I need to remember that. Be like, yo, self! You’re doing the anxious shit again.
I’ve been addressing some of this with Tara Brach’s podcast, because—at least for now—appointments and schedules trigger a physical anxiety response. So I’m trying to self-soothe for now. Without the Oreos.
Things are okay this morning. The literal and figurative clouds have moved out, and I am not overly anxious about tomorrow morning’s lung function test, thanks in part to the Dirty Dr Pepper.
Several people have donated to my latest GoFundMe effort, and Beth told me about Nectar adjustable beds. Their regular prices aren’t insulting. And when they’re on sale, they are way more affordable than the Sleep Numbers. (I still don’t have the money now, but getting what I need feels possible. Mom said she’d help.)
I can’t express how much better I feel when things are possible.
I could turn this into a lecture on accessibility, but I’m trying to remind myself that assholes can’t grow ears. Anyone who’s capable of understanding will get it whether I rant about it or not, right?
In the meantime, I’m opting for a bed rail*. It’s very affordable, covered by insurance, and will hopefully help me pull myself up by my weakened right arm when my left arm is floppier than a 5.25″ disk and I need to pee.
Need more good news? I pooped today. Yeehaw!
Another good thing is that I am sipping on a Dirty Dr. Pepper from Sonic. Dan tried the last one I got and winced, saying it tastes like suntan lotion. I admit it was heavy on the coconut and lime, but that’s the thrill of getting a mixed drink for me. You never get the same drink twice. Today’s is exceptionally delicious, higher Dr. Pepper ratio than last time.
Dan can have his jalapeno-laced burrito and I can have my small Dirty Dr. Pepper and the caffeine can spur my GI tract into action and we can both be satisfied and happy.
I still have the cold sore, and my tongue and the inside of my cheeks are inflamed, but that’s pretty minor stuff. I’m confident it will get better. I usually hate a trite expression, but since I’m not in the middle of one of my IBS-C flares I’m going to use one anyway: This too shall pass.
Ope. More clouds. I’m out before things get too hurty.
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*Update: It’s here but the one the insurance company covers doesn’t fit. Sigh.
I’m taking a break from social media. I’d already cut way back on Facebook and deleted my Twitter account, but I mean from all of it. I need to take care of myself and constantly worrying on behalf of other people—from strangers to close friends—isn’t helping me do that.
I don’t mean I’ve stopped caring about actual things, but I’ve stopped making it easy for my brain to imagine horrible scenarios I have no way of verifying.
So if you’re seeing less of me around the internet, that’s why.
It’s unfortunate I’m losing my damn mind while I need to fundraise, but whatever. Not the first time that’s happened and likely not the last. There’s probably some connection there, but it doesn’t serve me to dwell on it.
On Saturday I think it was, I listened to that Tara Brach podcast episode on Embodiment like six times. I’m finding a lot of stuff in there to ponder, helpful stuff. I think I’m chipping away at my anxiety. My IBS pain is going down too. I feel less like an overinflated kickball.
While contemplating my past traumas (two early psychological abuses) it occurred to me that the reason trying to heal from them now wasn’t working is that I didn’t need to. I had already done the work. Digging in again because I thought I needed to #MeToo my way out of a soggy paper bag was overkill. I was retraumatizing myself for no real reason.
See, I developed coping habits escaping those relationships that became habitualized. And that’s the actual problem.
For instance, while imagining a plan of action for dumping the first “I’ll kill myself if you leave me” guy (I was young and didn’t know) I would repeatedly have conversations in my head where I’d imagine how to escape the controlling and manipulation without being the impetus to someone’s suicide.
That coping mechanism worked back then, helping me build up the courage to end what was hurting me and envision a different kind of future. But now that overactive imagination is just a habit fueling my anxiety, not a creative way to choose a solution. It has me trapped in my own head.
I want to be clear that I’m not making excuses for any abusers. They are still assholes. But what I realize now, finally, is that there is no creative way to make an asshole listen—assholes can’t grow ears.
Anyway, this anxious imagining eventually translated to me obsessing about how best to describe my physical symptoms at doctors’ appointments. But by rehearsing my conversations in advance, I implicitly accepted a burden that wasn’t mine. I was losing a lot of sleep, and I mean that in the most literal way possible.
It takes energy to imagine. No wonder I’m exhausted.
If there’s a way to be in abdominal pain and not also spiral into anxiety, someone out there please tell me what it is. Please.
I was up at 4:30 this morning again with intestinal distress. It was a mixed bag for me, emotionally. On one hand, I understand that the reason I still feel terrible is that this is not over. On the other hand, why is this still not over?!
When I don’t feel good, which is all the time these days, I watch Bob’s Burgers a lot. I recently saw the episode where Louise has an over-night with her class at the aquarium and gets constipated. Then I saw the Superbowl episode where Gene clogs a toilet at Jimmy Pesto’s. It occurs to me someone who writes for Bob’s Burgers has IBS.
Still no fever, which is good in all ways but the diagnostic ones.
Last night there was a family thing where everyone had calzones from Sauce on the Side—one of my favorites. Not only did I forgo the calzone to stay in bed, but I didn’t even throw myself a pity party about it. That’s how miserable I am right now. Eating rich foods sounds worse than enduring another four years of high school.
The only things bringing me GI joy right now are the Creamy Coconut Outshine bars. They’re like the pudding pops of my youth, but with coconut and without the rapist spokesperson.
I sent a message to the nurse practitioner to explain my situation last night and let her know I’ve stopped taking the hydroxychloroquine—at least until this clears up.
There are a few things that could have set me off, so I’m not ready to give up on it without a medical recommendation. However, it’s certainly not helping this present darkness, and I don’t want to needlessly develop a bad association.
Seeing how I ordered myself a grocery care package from Walmart and I was approved this week for Walmart’s affiliate program, I thought I’d share what IBS relief stuff is being delivered today.
Brief disclaimer since this is the internet: I’m disabled, but not so disabled I don’t delete comments from people who try to shame me about accessible delivery services, packaging, and whatnot.
Peppermint tea is soothing for the stomach. I frequently get tired of drinking the same thing, so I like to have a little variety. That leads me to my next purchase.
I’m not a fan of tea, but I always take my medicine. Ginger and I go way back to my first round of chemo. It helps with nausea.
FYI: Ondansetron (generic for Zofran) works well as an anti-emetic, but, girlfriend, it stops all the pipes from chugging. Give me some ginger and I’ll deal, thank you very much.)
I haven’t tried this yet, so I’m not vouching for it. It contains chicory though, so this has to be tried with forethought. It’s not time yet, but it will be waiting when I’m ready.
My taste buds prefer ice cream, but I’m trying to be kind to my intestines right now. The colder, the better even when it’s not the middle of July in the Northern Hemisphere.
Salt is just something I crave when I’m drinking a lot of water. Plus I really like the movie theater butter flavor on these. Popcorn hurts me, so I make do.
Lightly toasted with peanut butter for when I’m hungry, but not adventurously so. Dan and I both like them and just have them around anyway. This brand comes pre-sliced.
Usually I would treat myself with a package of Double Stuf Oreos, but graham crackers have less sugar. (Processed foods are a no-no, but YOLO. Also sugar is delicious but sadly a trigger for me, so I’m opting for less sugar. I’m a work in progress, okay?)
I’ve spent the last three days wondering if emergency surgery would be required to clear a bowel obstruction.
Here’s the thing. If me talking about poop troubles you in any way for any reason, you need to find something else to read. I have IBS, zero qualms, and a bag of edibles making me feel pretty bold right now.
I promise you I can’t be bothered to care whether this topic makes you squirm. Plus there are people out there who need me to write about this as much as I need to tell the tale.
Last night I went to bed near tears, my abdomen hurt so much. I spent most of the late afternoon using the shiatsu massager someone gifted me a couple of years ago on my belly. The heat and massage relieved some of the discomfort, and I was desperate.
Plus, I’d read that self-massage can relieve constipation and since I’m too weak and fatigued, I knew it was the closest I was going to get. I had to try.
I also sipped hot tea. I ate Activia. I took laxatives. I drank coffee. I threw caution to the wind and ate IBS-D triggers. Then, when none of that helped, I did the only thing I could. I panicked and let the anxiety in.
I laid in bed, staring at the ceiling and contemplating the blogger from 14 years ago who almost died because of a severe bowel obstruction. I saw her face and her hospital gown in my mind’s eye, and I pondered the worst.
Anxiety used to trigger IBS-D, by the way, but not this time. That turd wasn’t going to budge for nothin’.
I spent enough time on the toilet hoping for a bowel to twitch that eventually my legs went purple from the blood pooling around my feet and ankles.
(I have a foot rest, but after so much time even that doesn’t help.)
When I woke up this morning to take my levothyroxine, the water I sipped made me notice just how much I wanted to barf. I closed my eyes and willed away the nausea, falling back asleep for another hour. But when I woke again, the urge to hurl was still there.
I felt that familiar discomfort in my lower left abdominal quadrant where something (it was the poop) was setting off radiating nerve pain. I dug my palm in a little, pressing and pushing down toward my leg. My bowels rumbled.
“This is it! It’s happening! Finally!” I thought.
And so it was that I pooped today.
But you know what was waiting in the wings behind that IBS-C poop? IBS-D poop. That’s what.
No wonder I felt so awful. I might as well have been walking around for days with a cork up my ass.
And the best part is now I get to wonder if this is just ordinary IBS stuff or if the Plaquenil is making shit worse.
I’m so proud of myself for pooping today, I should buy myself this T-shirt.
The exacerbated nerve pain increased rapidly after the edible wore off yesterday, so I decided not to be a hero. I took a 10mg (what now?) square of the Incredibles strawberry crunch bar around 4 o’clock. I microblogged some notes and will review the Incredibles edible like the Ache Away chews. But later. I don’t feel like doing it right now.
Anyway, that’s why I took 10mg again instead of reverting to my usual 5 mg. Easier to compare notes with like dosing.
That’s my story, and I’m sticking to it.
I see today that the barometric pressure has topped up again and the weather should be stable for a couple of days. Fingers crossed that does the trick, and this present migraine is on its way out. Or I’ll have to shake my fist at a cloud or something.
Edibles are dehydrating, in case you’re not familiar. (If you don’t know how dehydration can complicate IBS-C, congratulations for being regular. I hate you.) So I have to drink extra water while sleeping 6 additional hours a day and doing my best bipedal sloth impression when I’m awake my eyes are open.
What I’m trying to say is that dragging a cup of water to my face while under the influence isn’t easy, but somehow I managed to negotiate an annoyingly troublesome side effect of medical marijuana before things got out of hand. I feel accomplished. Don’t take pooping for granted, people. Listen to your Auntie Em.
Also iced coffee is medicinal but looks like I’m just treating myself. So next time your evil co-worker Carol comes in with that Frappe, you have my permission to assume she’s cranky for reasons and giggle your way to 5 o’clock. I’m full of great life advice today. Bookmark this post. I’ll wait.
What I’m about to write will not be for everyone, but me and the people who get it are going to have toilet church this morning. The rest of you are welcome to attend. We dare you to try and understand.
I decided on Monday that it was time to go back on rosuvastatin (generic Crestor). My primary doctor prescribed it last year for my high cholesterol after atorvastatin (generic Lipitor) caused me to hurt like the dickens*.
I’d been eating like a 20 year old, because food was one of those things I couldn’t be too thoughtful about. I frequently used up my brainpower on things like surviving 30-minute rides to harrowing medical procedures and then recovering from the three-day crash that ensued.
Consequently we DoorDashed** a lot. I ordered what I wanted, not what was best for me. Because it was the best I could do at the time.
Not exactly advisable for a forty-something.
Even a healthy one.
So it wasn’t a surprise when I got prescribed cholesterol meds. When the first one caused untenable side effects, my primary physician had me try rosuvastatin.
I’m trying not to make this tale incredibly long for all our sakes, but I went off of it while trying to figure out why my lymph nodes were huge. This week I decided it was time to go back on it because it clearly wasn’t the medicine causing my problems.
However, one of the side effects of rosuvastatin is constipation. (I think we all know where this is going, don’t we?) And in the time I’d been off it, I’d forgotten my doc told me to cut the pills in half because of my drug hypersensitivity. So I took twice my recommended dose, because: my memory. I also recently upped my fiber intake because: diverticulosis.
I repent.
Hi, I have IBS, if you’re new here. I am either constipated or… the extreme opposite of constipated. As I have told anyone who’ll listen to my gastrointestinal woes, I’d rather have diarrhea than be constipated. Though neither extreme is fun, diarrhea is acute. It’s misery for a limited time, followed by almost euphoric relief. When it’s over, clouds part and angels sing.
Constipation, by contrast, is protracted suffering. I hate it. It’s why I never finish post-operative pain meds, sometimes eat Taco Bell medicinally, and frequently shout “Demons, out!” while seated on the toilet.
Well, I think docusate sodium is better for the soul than a communion wafer. And my fiber-undigesting self believes constipation is a little-discussed circle of hell. My Senekot Sin was that I didn’t account for the rosuvastatin, let alone too much rosuvastatin.
God have mercy on my painfully bloated, immotile colon. Forgive it for all the radiating nerve pain it causes, because I sure as shit*** can’t.
* I looked this expression up. Apparently it originated in the 1500s with “dickens” being a substitute for “devil” though present-day me wonders why you couldn’t just say devil. Was it a Voldemort-like situation?
** Use this link for $10 off your first three orders of $15 or more, and I get $20 in credits.
So, where was I? Or rather, what part of the story to tell next? This is not a linear tale, if you hadn’t noticed. Basically, I am wondering about the similarities between MS and fibromyalgia.
***
It was Tuesday morning that I contacted the folks at Illinois Neurological Institute about being evaluated for MS. That was after the Walgreen’s incident where I had to lift my leg into the car and also after a few casual “Have the doctors ruled out MS yet?” conversations. But it was before I recalled any of the episodes I detailed in Part 1 and Part 2 of this series.
***
“Before we can see you,” the representative from INI explained, “we’ll need a referral from your primary doctor and all of your records including lab work, scans, exams. We need someone from that office to call us so we can fax them a form to tell them what to fax back to us.”
“Um, OK. So first step is just to have my doctor’s office call you guys?”
“Yes.”
Great, I thought. There are about four too many steps for it to happen without my having to micromanage the whole damn process. Fuck. Fuckity fuck.
With the phone to my head, my laptop battery dead, and no paper nearby, I pulled a leg of my pajama pants up and wrote the needed info on my knee.
***
My primary doctor’s office said she would be out until January 4—which meant a whole week to second-guess myself. Of course, I started immediately.
See, when you’ve seen as many doctors as I have and you’ve suffered through dozens of medical tests that all come back negative, you start to wonder if you’re what’s wrong with you. I asked myself if I was being ridiculous and dramatic for wanting to see MS specialists.
Will it be worth the trouble of getting my records to them, traveling to Peoria, submitting myself to more tests? And what about when all of those tests come back negative? Will it have been worth it then, or will I wish I had just accepted my circumstances?
***
That’s when I decided to visit MSSociety.org and read some patient stories. They all talked about problems with vision, and I remembered that this was the thing that made me decide not to ask my doctor about MS tests several months back.
I have never had problems with my vision. I know it says that 3% of patients don’t have them, but I still don’t think… Oh. My. Shit.
In the middle of that thought, I remembered that time in 2005 when I was watching TV and there was a hole in my vision. And because I’d linked that moment to my vision-blurring migraines between 2011 and 2013, those memories washed over me too.
What if the start of my decline wasn’t in 2014? What if it goes all the way back to 2005? What if those were episodes of optic neuritis or whatever-the-hell?
Last month marked the second anniversary of my fibromyalgia diagnosis. And even though the ICD code has been following me around for a while, I’m still having a hard time pinning down what that means for me, exactly. What does patient advocacy look like for me?
I haven’t yet developed an elevator pitch for talking about my fibromyalgia because it’s just too damn complicated to sum up. The next best thing, it seems, is to just blog about whatever I need to put “out there” whenever I’m able and inspired.
Writing about my condition and my day-to-day happenings helps me sort out my own thoughts and feelings while giving me an opportunity to honestly answer a question I get asked all the time.
How are you doing?
Though the words that come out of my mouth might say otherwise, the reality is that I am never OK. There’s always a caveat. This is where I get to talk about the caveats.
Blogging has other advantages too. It lets me vent about what’s wrong while giving my husband a break from the sometimes hourly updates about what hurts and what is and isn’t working right. (Why is no one ever as excited as we are to have a good poop?)
It serves as a sort of patient log, helping me identify patterns and theorize about the cause of my flares. And sometimes it helps me accept that there is no pattern or discernible cause, that my condition just is.
My blog connects me to a large support group of other Spoonies and fibromyalgia patients, giving us opportunities to discuss what helps. Because, let’s face it, chronic patients are perpetual targets for anyone with a pill, a book, or a scented candle to sell. We have to look out for each other.
And it’s that “looking out for each other” thing that really motivates me to write candidly about my experiences. (Yes, even about medical marijuana and IBS.) Don’t get me wrong, this blog is for me, first and foremost. But I also want it to help other patients find ways to talk with their friends, family, doctors, and coworkers about stuff that’s next to impossible to put into words.
I want these conversations to meaningfully change our healthcare system, change the way we view and accommodate disabilities, and improve the lives of every patient with chronic illness.
Because laughter is cool and all, but empowerment is the best medicine.
This post is part of the Health Activist Writers Month Challenge (#HAWMC).
Prompt 1: What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism?
