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?”
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.
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?
This is my fibromyalgia. There are many like it, but this one is mine.
Fibromyalgia is typically defined as “a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.” I have found this definition particularly useless when trying to explain my life to friends and family, so this is my attempt to compile an exhaustive list of what my life is like with fibro*.
I was diagnosed by a rheumatologist** about five months after my first complaints of muscle weakness and generalized, on-going pain. On a questionnaire, I answered questions about my sleep. On the same form, I was asked to shade in the parts on the human body that hurt.
“I see you shaded in your entire body, front and back,” the doctor said.
And then he pressed on seemingly random areas of my body. The pain was so intense my knees buckled and I cried out in the exam room. That was the day I learned about trigger points—the day I realized I could actually hurt worse. The day someone induced my first honest-to-god fibromyalgia flare up.
So far, I’ve received three questions about medical cannabis via my contact form. All three were variations on the same theme: Does medical marijuana make you high? I’m answering this from a personal perspective, just to be clear. What follows is NOT an answer to Does medical marijuana make one high? or Will medical marijuana make me high?
TL;DR answer: Sometimes.
The first three times I took medical cannabis, I used THC-infused Indica gummies. Each time I took one half of a gummy with food before bed, and I did not get high. The fourth time I took half a gummy on an empty stomach while ill (and probably pretty dehydrated) and I got high as fuck.
A short time ago, Dan and I traveled to Indiana for a funeral. I was sad, anxious about traveling with chronic pain and IBS, and (as usual) ignoring my body’s attempts to warn me to be kind to myself.
We were on the road at dinner time, which meant stopping for a bite along the way. I had a baked potato and a vanilla Frosty from Wendy’s. Maybe not the healthiest meal, nutritionally speaking. But at the time all I was hoping for was “not spicy” and “hopefully not tainted.”
A baked potato and vanilla shake seemed like my best options on a strip of road where burgers, onion rings, tacos, roast beef, chili, fried chicken, and 12-hour-old wilted salads were my other options.
We met up with family at the funeral home. I hugged my parents and extended family and took a seat at the back of the room, as close to the restroom as possible while still being present for the service.
Aside from my usual aches and pains and moderate vertigo when standing up, I made it through the service without incident. I hobbled down a few stairs to the parking lot, and we left for home.
The cramping didn’t start until we had been on the road home for about an hour. “Dan, you are officially being warned. Take the next exit where I can access a public restroom.” I clutched my gut and loosened my seat belt.
I prayed to no one in particular that I would make it. “Also, pull the car right up to the fucking door please.”
Dan obliged. I made it. As far as anyone else knew, I was just a regular traveler taking a break to answer the gentle (ha!) calls of nature.
(Funny story: when my IBS was at its absolute worst, I’d run to the bathroom at home, slam the door shut, and sing “Looks like we made it…” at the top of my lungs. A signal to Dan that things were going to be OK—not good, but OK—and a reminder to myself to laugh.)
We were back on the interstate. Home was less than an hour away. I sighed, relieved.
Three blocks from our house, I cried out in pain. The cramps were back. I took rhythmic breaths through clenched teeth. “I need to get home. Now.”
Dan gave the car a little more gas. We were doing 45 mph on a 25 mph street, coming up on a red light.
Turn green. Turn green. Turn green. FUCKING TURN GREEN ALREADY.
“Dammit!” I yelled as Dan brought the car to a halt at the intersection. He was doing the best he could.
Hee hee. Hoo Hoo. Hee hee. Hoo hoo.
We were moving again, but there was a four-way stop a few hundred feet in front of us. Cars were queued, waiting for their turn. There was no way Dan could just roll through this one.
“I’m not going to make it,” I said.
We were literally a block from home, and I started crying.
I showered and cleaned up on my own. The only pair of dress pants I owned went in a garbage bag. I put on my pajamas and crawled into bed. Everything hurt, I was deeply embarrassed, and I was emotionally spent. I reached for the medical marijuana, knowing it would dull the sharp edges of my pain, calm my gut, and help me sleep—just like the first three times I had taken it.
Thirty minutes later I reached for the glass of water on the table beside me. “Why is my arm doing that?” I giggled.
“Doing what?” Dan asked.
“Look. I have a Go-Go-Gadget arm. It’s reaching too far and I can’t pick up the glass.”
“Oh my god. You are so stoned right now.”
“That is so cool,” I said. “When I close my eyes the things I think in my brain are cartoons!”
“What’s so funny now?” Dan asked.
“There are strings around my lips and in my cheeks. Someone is pulling them! I can’t make my face unsmile! Turn on Bob Ross!”
“Dan? I’m having really intense deja vu. Also, how many Modern Family episodes are they showing tonight? Jesus.”
“This is still the first one.”
“I know why hippies are hippies. If we give mean people weed, they can love everyone too. Like I do.”
“Take a look! It’s in a book! A reading rainboooooooww!”
“Why can’t everyone who’s sick have weed? I want everyone to have weed. I love weed.”
“Maybe one day.”
NOTE: I have chosen not to take medical cannabis while I try to evaluate the effectiveness of the gabapentin the doctor just put me on. I still have a few posts in the queue, however.
I’m taking a break from work to browse Amazon for cervical collars. I really have no idea whether one of these would actually be helpful, but I feel like I need something to hold my head up for me. My musculoskeletal system is clearly not up to the challenge, and Dan assures me that no doctor would agree to put me in a halo brace.
Rather than re-write the horrors of this weekend, I’ll share a screenshot from a Facebook update to fill you in:
Heading into the long weekend, I was optimistic that four consecutive days off would give me time to recharge. What a fucking disappointment reality turned out to be. Sunday night the pain was so bad I was in tears. That’s when I finally decided to take 20mg of nortriptyline.
Taking 20mg is totally OK, by the way. Dr Gastro™ prescribed 30mg for my IBS and help sleeping, but I usually just take 10mg because more makes me too sleepy to function the next day. However, if I’m suffering and don’t need to brain much the next day, I will let myself take 20mg.
As pain treatments go, it’s not ideal. I mean, it doesn’t relieve the pain so much as make me unaware of it. For 8 to 10 hours I’m drugged and oblivious. I can’t not sleep. That’s why I only take it at night before bed. Daytime pain relief is currently not available to me.