Fibromyalgia · Medical Cannabis

Fibromyalgia Med Check

assorted-pills
By Ragesoss

The second week on iron supplements has not been as dramatically fabulous as the first week was.

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.

Fibromyalgia

Power to the Patient

empowerment-is-the-best-medicineLast 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). If you want to learn more about the 30-day writer’s challenge or sign up, you can do that here.

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?

Fibromyalgia · Medical Cannabis

Pot, Protein, Pumpkins

halloween-carved-pumpkinI’m a little better now than I was at the end of last week, having had the weekend to do absolutely nothing. I took one-quarter of a cannabis gummy on Friday and again on Saturday and slept nearly 12 hours each night.

I know that the goal is to sleep just 8 or 9 hours every night and sleep well every night, but I can’t do that unless medicated. And if I’m medicated, I am so sleepy I can’t think straight. And if I can’t think straight, I can’t work.

So, at least for now, weekdays equal suffering and weekends equal sleeping.

***

Both my primary doctor and The Fibro Manual have suggested that I try to increase the amount of protein in my diet. Something about cells burning energy inefficiently in patients with fibromyalgia.

Blah, blah, mitochondria. Blah, blah, don’t skip meals.

I’m working on swapping some of my carbohydrate calories for protein calories…incrementally. Since I’ve been logging what I eat in My Fitness Pal for more than a year, I can quantify this change. Yay, numbers! Yay, data!

Looking back at my nutritional reports, it was pretty common for me to get less than 10% of my daily calories from protein. My first goal is to bump that to a consistent 15%, or about 62g of protein, daily.

I’m a meat eater, but not an exuberant one. Most of the additional protein comes from non-meat sources. I mix in a little protein powder with my Greek yogurt. Opt for the protein-packed cereal. Ask Dan to make pasta with Barilla’s high-protein penne and throw in some cannellini beans.

Long-term, I’d like to get to 25% protein. That may require giving up carb-heavy Gatorade, and I’m just not ready to do that yet. (God knows I’m not giving up dessert. I know my limits.) Gatorade’s one of those things I started drinking because one of my medicines was so dehydrating, and it’s been a huge help for that and more.

Baby steps though.

***

Happy Halloween! We didn’t carve a pumpkin this year (the one above is from 2010), and I’m not feeling up to answering the door, but I did manage to keep one Halloween tradition alive this year—ordering a custom Christmas ornament on Etsy!

Fibromyalgia

Isn’t That Stigma Something?

social-stigmaFor most of yesterday, I sat at my computer wondering why I hurt so bad. I figured that if I was going to have a bad day this week, it would have been Monday (my first day back to work in three weeks).

Nope. Because nothing health-related can ever make sense in my world, the flare had to visit me Tuesday. By the time the clouds had gathered, I was an 8 out of 10 on the pain scale. I saw it coming, but there was stuff to do.

By the time work was over, my body was involuntarily L-shaped. I had been so focused on work that I couldn’t unbend myself or get out of my chair at quitting time. I was sad, achy, stiff, cold, and anxiously jumping to worst-case scenarios in no time.

What if this time it gets so bad I have to stop working for good? What will happen to us?

Then I remembered the cannabis gummies sitting on my nightstand, and I took one-fourth of one.

***

I recently read that chronic pain patients don’t take pain meds correctly. Instead of staying on top of their pain and keeping it muffled and bearable, they wait until their pain is so obnoxious they can’t function to seek relief.

There are likely a few reasons for this, ranging from “I am tougher than this pain, I’ll keep pushing” to “I don’t have enough medicine to handle my pain, I’ve got to ration this shit in case things get worse” to “I’m really tired of my government, my doctor, and my pharmacist treating me like a junkie.”

***

As the cannabis made me comfy, I decided I’m going try not to label people that need relief from pain as anything other than people that need relief from pain.

Me included.

Fibromyalgia

Being Sick is Scary… For a Lot of Reasons

scared.jpg“Just so you know, Dan, I read that quitting Gabapentin can be rough. Withdrawal symptoms include suicidal thoughts. So, keep an eye on me.” He paused in the doorway on his way to the kitchen.

“Okay, I got your back,” Dan said. “Need anything while I’m up?”

“Yeah, could you bring me a knife?”

***

The number of nights I’ve had bad dreams in the last nine days is exactly equal to the number of times I’ve taken Gabapentin before bed. At first, the bad dreams were pretty typical. But in the wee hours on Saturday morning, I woke up from a bad dream and couldn’t move anything. Not my arms, not my legs, not my fingers, not my toes.

The paralysis only lasted a few short seconds, but that didn’t really minimize how scary it was for me. Much scarier than the bad dream I’d just had. (My parents were throwing me a birthday party, but no one came and my parents had looks of pity on their faces. I know, but trust me: It was brutal for someone who wants to be honest about her struggles but also not be pitied.)

***

Sleep does not come naturally to me anymore, probably because fibromyalgia is characterized by an always-on stress response. If something I do or some medicine I take further impedes my body’s ability to get restorative rest, I drop it fast.

While Dan was helping me walk down the hallway that afternoon, I announced, “I’m not taking Gabapentin anymore.” I didn’t take it before bed Saturday evening.

***

Sunday morning, about 2 am, I had what I’m calling a night terror. I’m assuming as a result of Gabapentin withdrawal.

I dreamed that I was awaking from sleep in the guest room because inanimate objects in my home were attacking me. A lamp. The shower head. A paper towel.

I screamed and screamed and screamed for Dan to come help me. But it was a nightmare, so naturally I couldn’t scream loud enough.

I kicked and flailed and screamed some more, until Dan finally came into the room to comfort me.

Only he wasn’t actually there; I had begun another dream. The Inception-level dream within a dream shit was already a few layers deep at that point, and the more I tried to wake myself up, the further down the rabbit hole I fell.

I did finally wake up for real, sweating and clenching my chest. I was breathing, but it felt like I was suffocating.

I closed my eyes; I had only been asleep for two hours and was physically exhausted. Two hours was no where near enough rest for the night. But as soon as my eyelids fell, the panic swallowed me again. I opened my eyes, and reminded myself that it was just a bad dream. My eyelids got heavy again; the panic swallowed me again.

That’s about enough of that.

***

I got up and went to the master bedroom to find Boomer snoring soundly on my side of the bed.

“Something wrong?” Dan asked. My stumbling into walls had apparently roused him from sleep.

“Just another bad dream. It was so…”

But before I could complete the sentence Dan was snoring again. I curled up in the top left corner of the bed and closed my eyes…only to be swallowed by the panic. Again.

I got up and went to the living room, turned on an accent lamp, played Farm Heroes Saga to keep myself awake, and vowed to wait it out.

***

Being chronically sick is scary. Of all the ways I react in response to fibromyalgia, fear is the thing that takes up the most space in my brain and the thing I talk about the least.

When a flare begins, I fear it won’t end this time.

I fear falling because I know I can’t get up on my own.

I am terrified of addiction to drugs like Gabapentin (even after taking it for just nine days!) and am scared of the inevitable withdrawal symptoms I will face when I decide to quit taking it.

I am scared of drug side effects.

I get scared that my fibro fog will lead to big mistakes with severe consequences.

I worry that I’ll collect more symptoms. I worry that those symptoms are a sign that something else is wrong. I worry that my health care providers will miss it—or worse, won’t care. I worry that I’m misdiagnosed. I’m scared that a misdiagnosis would mean I’m not treating something bad, and that the longer I go without treating the real thing the less treatable I become.

I fear that spending to much time being afraid will make me sicker.

***

Dan handed me the knife, and I started cutting a gummy into quarters. I’m off of Gabapentin and using small doses of medical cannabis to keep the proverbial elephant off my chest and sleep without being terrorized while my body adjusts.

Medical marijuana might be the only thing I don’t fear right now. I want to hug it.

Fibromyalgia · Medical Cannabis

The First Time I Got High

medical-cannabis-gummiesSo 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!”

***

“Dan?”

“Yeah?”

“Why can’t everyone who’s sick have weed? I want everyone to have weed. I love weed.”

“Maybe one day.”

“Dan?”

“Yeah, Love?”

“Nothing hurts.”


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.

Fibromyalgia · Medical Cannabis

Got My Illinois Medical Cannabis Card

illinois-medical-cannabis-cardIt’s here! My Illinois medical marijuana card is here!

I went to the Medical Cannabis Outreach mobile clinic on August 13, 2016 for help with my application and fingerprinting, and I received my card in the mail on September 26, 2016.

That’s 44 days from start to finish.

I am relieved that marijuana is now available to me, particularly after fighting through some very difficult days in the past couple of weeks.

The plan is to write about my experiences, which promise to be enlightening. You see, not only will I be able to write about them from a patient perspective, but also as a new user.

That’s right, folks. Aside from a couple of contact highs in college, I have absolutely no experience with recreational marijuana. That’s because when I was growing up about all you could do was smoke the stuff, and that didn’t appeal to me. (For better or worse, no one ever offered me a brownie.)

Also, I had a very real fear of Satan, demon possession, jail and criminal records. So, yeah.

Anyway, my hope is that writing about using medical marijuana to treat my fibromyalgia will accomplish two things: 1.) opening a patient-to-patient dialogue that helps me and others discover what works, and 2.) showing non-patients on the fence about medical marijuana that it’s not something to fear.

Please feel free to use the comments section of any post or my contact form to ask questions along the way.

UPDATE: It wasn’t fibromyalgia. It’s a brain tumor.