Next Monday is my Temodar allergy test. To get accurate results, there are many medications the allergist has asked me to stop taking. Things like Benadryl, hydroxyzine, nortriptyline. (Not that I take these things regularly, but I’m especially supposed to not take them right now for reasons I will assume are obvious.)
Medical cannabis is not on the no-no list that was mailed to me, but then it wouldn’t be. So I took myself off of it too. Because I don’t want to have to repeat any tests or suffer the consequences of inaccurate results.
So when I got up this morning stiff, sore, unrefreshed, and the most not-morning-person I’ve been in a couple of weeks, I said out loud “I miss you, Pot.”
Eating half a medical cannabis peanut butter cookie with a scoop of ice cream at 7 p.m. has become something of a ritual for me. Like being tucked in by my parents when I was five. My 1:1 CBD/THC cookie kicks in about 9:30 or 10:00 pm. It’s then you’ll find me relaxing in my recliner until I can’t keep my eyes open and I move to bed.
I sleep well until my dexamethasone hunger and the rising sun wake me up. And let me tell you, after literal years of pain-related insomnia, good sleep is perhaps my favorite thing about cannabis.
But that’s not really what this post is about. It’s just my roundabout way of explaining to you why I was up and restless last night and how I knew that Dan was awake all night long too, despite trying to shuffle quietly around the house.
“You had a rough night? You were up a lot.”
“Yeah,” he said. “This tooth.”
His tooth has been nagging at him for months now, since about the time I was hospitalized. And because Dan has this habit of doing everything for me and pretty much nothing for himself, he’s been ignoring it. Or trying. I’ve noticed the Anbesol sitting out on the bathroom counter a lot more lately.
“You’re calling the dentist tomorrow. I know we don’t have dental, but we’ll figure it out,” I said.
“You have to put the oxygen mask on yourself first and all that shit.”
“You’re no good to me dead, Poehlman.”
This happened with another tooth a few years ago, and it turned into an emergency room visit and oral surgery a few days later. (Dan takes a biologic that makes him a high risk for infection, and the tooth abscessed, and…)
He has promised to call first thing tomorrow morning. If he requires oral surgery this time too, it will mean finding someone who can 1.) sit in the waiting room while he’s under anesthesia and 2.) drive him home when he’s finished and asking staff what time the X-Men are coming over for dinner.
It will also mean asking for more money from our support system.
As everyone’s probably tired of hearing by now, we have no income at present. So in preparation for the costs associated with The Next Thing™, I’m adjusting the goal for my YouCaring campaign and asking you to consider giving—or sharing the campaign on your blogs and social media.
Sunday night was…weird. I went to bed early because I was feeling…weird.
Dan came to check on me. “What’s up. You doing okay?”
“Well, what’s wrong?”
“I don’t know. I just feel really strange. Like something’s squeezing me, but from the inside. Everything’s heavy. I feel like I can’t breathe.”
Dan tried to push me for clarification, but I had nothing. The sensations were new, and I couldn’t determine whether I was having some kind of panic attack or my worst flare up to date.
Am I panicking? Or am I just so weak I my muscles won’t expand enough for a solid breath?
I could tell he wasn’t sure how to help. “I’ve just been lying here trying to decide if this is worthy of an ER visit, but I don’t figure there’s much point in going if I can’t even explain what’s going on, you know?”
Spoonies learn quickly that ER visits are borderline pointless. Unless you can show the doctor a gunshot wound or… Well, it’s pretty easy to talk yourself out of going. They’re expensive as hell, and the doctor you end up with is a total crap shoot.
Like the one who gave me Mylanta and sent me home when I had a gallstone he didn’t bother to check for. That waste of my time cost me thousands of dollars and several more months of excruciating pain.
Ever since my doctor’s appointment on Friday, I’ve been getting weaker and weaker. And it’s not like I had all kinds of strength to start with. In fact, during the strength test part of the visit, she asked me to grab her fingers and squeeze them as hard as I could. I gripped the index and middle fingers of each of her hands and gave it everything I had.
I was thinking to myself, based on my perceived level of exertion, that she was going to say uncle. I pinched up my face and waited for her to tell me to let go.
Instead, she said, “No, as hard as you can.”
When I wake up in the mornings, my spasms are worse. I yawn repeatedly, and with each yawn my entire body tenses up from head to toe. The back of my right ear and earlobe are numb. My forearms and hands are mostly numb, but painfully so.
Whatever that means. How is it possible to be in pain and numb at the same time?
Talking triggers yawns, which triggers more head-to-toe spasms. Getting up from the couch—when I can manage to stand up—triggers head-to-toe spams too. I have to wait for the muscle contractions to stop.
Imagine you’re angry and making a fist. And you’re so angry that your arm and fist shakes in tight, tremor-like contractions until you let go of the fist.
That’s what I’m calling a spasm. Only it’s all over my body. And I can’t just think let go, and my body magically lets go. It’ll let go when it damn well feels like it, and there’s not a blasted thing I can do about it.
There’s no question the reality of my situation is starting to sink in. If you type the visit diagnosis items from Friday’s appointment (weakness, abnormal gait, clonus, restless leg) into my symptom checker app, you get these results:
Knowing what I do about my own body, I’m 99.9% certain I’m dealing with multiple sclerosis. But I can’t completely ignore that other possibility. And I’m already conditioned to fear non-answers. If the MRIs (just got them set up this morning and they are scheduled for Thursday) don’t show MS lesions or anything, what then?
Thank God for medical cannabis in Illinois. Whether Sunday night’s breathing troubles were directly related to my physical condition and spasms or my overactive, anxious mind, one quarter of a gummy helped.
In a few minutes, I felt the muscles around my chest and stomach let go. I could breathe. And then I feel asleep.
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.
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.
I have great news to report! This weekend I received the donation that got me to 100% of my fundraising goal.
I am excited and so very thankful to everyone that contributed, shared posts on social media, and offered words of encouragement.
When I first set up this campaign, I thought, “It’d sure would be helpful if I raised a couple hundred dollars.” I didn’t have any expectation that I would raise the full $685.
So much about my prolonged illness has felt like a fight — a fight with doctors, a fight with bill collectors, a fight with pain and insomnia, a fight with bad prescriptions, a fight to get out of bed in the morning, a fight against myself, a fight against the bureaucracy of the State of Illinois.
This $685 battle was one a bunch of other awesome people fought for me.
It might be a while before I have my card and am able to participate in the Illinois medical cannabis program. If you’d like to follow along with the rest of my progress, please connect with me on my blog: http://www.emilysuess.com
The Perfectly Posh fundraiser continues until September 25, and proceeds will help me pay for dispensary purchases. (As you probably know, medical marijuana is not yet covered by insurance.) You can join the Facebook event. Joiningg the online event doesn’t obligate you to make a purchase, by the way. You can just lurk and check out the products that are available if you like. https://www.facebook.com/events/885633958204043/
Thanks again to all of you.
Peace, love, medical dope! Emily
Unfortunately, Sunday was a high pain day, which means that as a matter of course it was a low mental health day. So I don’t have energy to write much more right now. Stay tuned, though, because later in the week I hope to write about some things I learned from the MedX conference livestream.