Yes, I realize that I’ve pondered a pretty lengthy list of possible diseases and conditions in the past 24 months or so, including rheumatoid arthritis, Sjorgren’s, lupus, myasthenia gravis, celiac disease, small bowel bacteria overgrowth, POTS (I still feel like autonomic dysfunction is a thing for me, I have just stopped tracking my pulse for my own sanity), and others I can’t remember.
And, yes, now I’m going on about multiple sclerosis, even though I already have a fibro diagnosis.
It’s okay if you’re rolling your eyes at me right now. I’m rolling my eyes at myself.
Each time a medical professional or friend or relative says something to suggest I might be a hypochondriac, I count to five and tell myself: You don’t know what it’s like to be them; they don’t know what it’s like to be you. Then I move on to the next thing and ask, “But have we ruled out this thing yet?”
***
Unless you’re chronically sick too, you probably have no idea just how reasonable it is to question or even believe you have something it turns out you don’t have. I mean, with so much symptom overlap among all of these named autoimmune illnesses…
Ugh. It’s not like I’m researching all this stuff for the thrill of it. I’m doing it because no one else will.
***
Inevitably someone (usually a medical professional) will try to get me to accept that I have fibromyalgia and just move on. I try, I promise I do. But the acceptance never lasts long, and it doesn’t help that others with fibromyalgia say to me, “What the hell?! I have never experienced that symptom.”
For me, fibromyalgia is an undiagnosis*.
At first, it was a helpful way for me to talk about a handful of consistent symptoms without having to spell them all out every time I saw a new doctor. But now I tend to view it as a diagnostic crutch.
When I talk about things that are happening to me, they are dismissed as things that “happen sometimes” with fibromyalgia.
On a related note, why aren’t more doctors curious? All the ones I’ve dealt with—even the “good” ones—pretend, at least to some degree, that they’ve got it all sorted out.
*Operative words here are “for me.” I believe people when they say they hurt and are fatigued; but I don’t think fibro explains enough of my symptoms. Most days I suspect it’s a misdiagnosis or that something else is happening alongside it.
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.
***
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?
Which means that I was a 7 or 8 on the pain scale less than 24 hours ago, and I woke up at about a 4 or 5.
This is my shortest flare in recorded history. (Yay, iron?)
***
The second time I was in the ER with a gall stone attack (2014), the attending nurse asked me where I was pain-wise on a scale of 1 to 10.
“Definitely a 10.”
She wrote that number on a dry erase board in my room, and then asked me where I’d like to be on that scale.
“I don’t know? Like 5?”
She laughed, but she wasn’t mocking me. “I think we can do better than that,” she said. “How about a 1 or a 2?”
Then it was my turn to laugh. “Uh, okay.”
She gave me IV dilaudid and in seconds, I was totally free of pain.
***
My point is not that I want to be pumped full of dilaudid all the time, but that people who experience chronic pain will happily accept any improvement on their current circumstances—even if that’s somewhere between “nagging pain, uncomfortable” and “miserable, distressing.”
Whereas compassionate people who have no experiential concept of chronic pain will be like, “Why the hell wouldn’t you ask for a 1? Dilaudid exists for a reason.”
***
On a related note, I typically call today’s 4 or 5 “better.” And I’m actually pretty happy to be here, because relative to yesterday’s misery this is better.
But I’m still hesitant to say the words “I feel better” because that can be interpreted as “I feel all better.”
For some people saying “better” is like saying “I had the flu last week. Today I feel better.”
I don’t read near as much as I did when I was younger. Partly because adulthood means more time working and less time “hobbying” but also because fibromyalgia and its accompanying symptoms can make reading a struggle. And who needs more struggle, right?
Anyway, these are the books I got around to finishing this year. Complete with my Amazon referral links.
“This book directly challenges the notion that the election of Barack Obama signals a new era of colorblindness. With dazzling candor, legal scholar Michelle Alexander argues that “we have not ended racial caste in America; we have merely redesigned it.”
If you think everyone in jail belongs there, you are terribly misguided. If you don’t believe we disproportionately imprison people of color, you’re wrapping your arms around a fact-free narrative. This book will wake you up.
“Colm Tóibín’s New York Times bestselling novel—now an acclaimed film starring Saoirse Ronan and Jim Broadbent nominated for four Academy Awards including Best Picture—is ‘a moving, deeply satisfying read’ (Entertainment Weekly) about a young Irish immigrant in Brooklyn in the early 1950s.”
I just thought I’d read the book to see what all the fuss was about. It’s a decent read.
“Reminiscent of the edgy, offbeat humor of Chris Moore and Matt Ruff…a dark and humorous story involving a doomsday gizmo, a horde of baddies determined to possess its power, and a clever thief who must steal it back . . . again and again.”
This was a fun and easy read. I was even able to crank up the font size on my Kindle and read it with a migraine. Nice distraction from the pain, plus a few good chuckles.
“Read the cult-favorite coming of age story that takes a sometimes heartbreaking, often hysterical, and always honest look at high school in all its glory. Also a major motion picture starring Logan Lerman and Emma Watson, The Perks of Being a Wallflower is a funny, touching, and haunting modern classic.”
I didn’t hate it. I basically read this just to be in the know; it gets referenced quite a bit in my social media circles. It was okay, but it didn’t really grip me. Still, I see what others appreciate in it.
“Landline asks if two people are ever truly on the same path, or whether love just means finding someone who will keep meeting you halfway, no matter where you end up.”
I’m a fan of Rainbow and her female characters. This book kind of put me in the mood for the holidays with it’s Christmas timeline, too. Bonus!
“Eleanor & Park reminded me not just what it’s like to be young and in love with a girl, but also what it’s like to be young and in love with a book.”-John Green, The New York Times Book Review
Have I ever mentioned that I used to work for John Green when I was living in Indianapolis and attending IUPUI? If he recommends a book, I’m going to look into it…eventually.
“Every family has its problems. But even among the most troubled, the Plumb family stands out as spectacularly dysfunctional. Years of simmering tensions finally reach a breaking point on an unseasonably cold afternoon in New York City as Melody, Beatrice, and Jack Plumb gather to confront their charismatic and reckless older brother, Leo, freshly released from rehab.”
I picked this out because it was in my OverDrive recommendations and I didn’t have to get on the waitlist to check it out from my local library on Kindle. Not disappointed.
“If you suffer from fibromyalgia and are struggling to get help from your doctor, you’re far from alone…. In this unique resource, Ginevra Liptan, M.D., shares a cutting-edge new approach that goes far beyond mainstream medical knowledge to produce dramatic symptom improvement.”
There are a couple of other fibromyalgia reads on this list. If you only read one of them, this is definitely the one I recommend.
“Jenna Miscavige Hill, niece of Church of Scientology leader David Miscavige, was raised as a Scientologist but left the controversial religion in 2005. In Beyond Belief, she shares her true story of life inside the upper ranks of the sect, details her experiences as a member Sea Org—the church’s highest ministry, speaks of her “disconnection” from family outside of the organization, and tells the story of her ultimate escape.”
Being born into a cult. Just…damn. Excellent read.
“This book discusses research and advances in treating chronic fatigue syndrome, fibromyalgia, and the baffling, often dismissed symptoms associated with these debilitating conditions.”
I read this book after Liptan’s and don’t feel like it offered much new or different info. I think if I had read it first, might have preferred it. Hard to say though. No do-overs!
This is the self-helpiest of the fibromyalgia-related books I read. I skimmed so much of it because it just wasn’t doing it for me. However, if you’re into the life-coaching scene and don’t mind reading obvious statements wrapped in positive speak, this might be encouraging to you.
“Lawrence Wright—armed with his investigative talents, years of archival research, and more than two hundred personal interviews with current and former Scientologists—uncovers the inner workings of the church.”
Horror movies and stories have nothing on Scientology in the nightmare department. This books is fascinating. I picked it up after watching the HBO documentary of the same name.
I’ve read that it can take a couple of months for the iron-deficient anemic to feel all better. I don’t know what that means for me, exactly. I don’t think I’m anemic per se; I think whatever is wrong with my body has depleted me of essential vitamins and minerals.
So what’s my next step? To keep taking the iron.
If everything is magically fixed because of it, hooray! If it’s not, at least I feel alive now. I’m also trying the probiotic thing again. I honestly don’t know if the Align helps, but the GI doc recommended it and I’ve got four weeks of capsules left.
I’m also now officially convinced that the weight I lost over the last few months had nothing to do with my willpower and everything to do with my IBS. Reversed course on the IBS and all the weight came back. But fuck it, weight is not my first priority. It’s not even top ten right now.
So pill roll call. Maybe TMI for some, but mostly posted so my fellow fibromyalgia patients can compare/contrast.
Levothyroxine*, daily AM Tri-sprintec lo*, daily AM Ferrous Sulfate (iron) 325 mg, twice daily with meal Zinc, D3, Magnesium, Calcium combo pill, twice daily with meal Align, daily with lunch Nortriptyline, daily at bedtime Nexium, every other day/as needed (Rx is for every day, but I discovered I could be symptom-free taking it less frequently) Medical marijuana, 1/4 gummy as needed at bedtime
* Prescribed many years before I had any fibro symptoms, but thought I should be thorough.
