It’s been a little more than two full years since I was officially diagnosed with multiple sclerosis on December 1, 2015.
The contents of this entire blog are a summation of my struggle to accept or even understand what that information actually meant for me and serve as a kind of proof that this crazy shit is actually really happening. Let’s face it. These have been two rather shitty years. I got my diagnosis. I began to go downhill. It made me wonder if the mere function of knowing somehow made my body kick into disability mode. Like ignorance was my friend, and now that I was enlightened, my body was throwing a disease party and my entire central nervous system was invited.
Limbs were useless. Fatigue made me a living zombie. I learned, for the first time in my life, what real anxiety feels like. I changed into a completely different person almost over night. I stopped recognizing myself when I looked in the mirror. I stopped going out at night almost entirely. It was just all too hard. All of it. All of the life I had before December 1, 2015 became too fucking hard.
You guys already know all of that, but it’s important to understand the mental affects this disease unleashed on me to understand why these last few weeks have felt so downright amazing.
Formerly outgoing, see-and-be-seen Beth, the girl who could handle anything turned into home-bound, never-want-to-be-seen Beth who lived in mortal fear of somehow not being able to think let alone walk. Sometimes this was a physical thing. Most of the time if was a physical thing but I’d been ignoring the entire mental side of what was happening. I tried and failed to look at the bright side. I swung back and forth between dire despair and insane denial. Cheryl, my therapist, and me just keep reassuring each other that we just had to believe it would get better. We just had to.
Then the pain started.
I was just getting back on my feet after the Great Relapse of Summer 2017 (I call it that in my mind, like a title of a movie), when I was trying to get back into some kind of routine with my life. Getting myself to the office at least a few days a week. Trying to function. Trying to try harder. In the middle of all of that, I started to feel this intense fire in my body. I’d never felt anything like it before. I think I have a fairly high tolerance for pain, but this was something different.
I would feel it creeping up my spine around 3PM while I was sitting at my desk. I would begin to feel desperate knowing where it was heading. I knew I could rely on Sandy, my BFF who also happens to work with me, to help me get to my car but then I had to get in my house, do my daily cat chores. Get myself to bed. The mere physical effort it took to get me out of my house and to another location rendered me basically useless because my body was riddled with fire. I got a fancy new ergonomic chair! It’s amazingly comfortable but it didn’t help with this newfound pain.
I’d drag myself home. Drag myself up and down and down and up a bunch of stairs. I’d lay in bed in tears, my entire body on fire from the base of my skull to the bottoms of my feet to my fingertips. I was eating 800mg of Ibruprofen every four hours or so (way too much). It didn’t help me even a little bit. I’d start to think about how the next day was likely going to be more of the same. It was becoming pretty consistent. Sometimes I woke up in the morning with the pain already in full force.
I was starting to feel desperate. If living any kind of “normal” life led to this kind of pain, I was beginning to panic. How could I do this? I do pretty well acting normal in the real world, but I’m not that great of a pretender! I was toying with the idea of asking The Great Scott if there was something I could take for pain.
The minute that thought crossed my mind I shuddered. NO MORE DRUGS. Those words echoed in my head. I cannot take a single additional prescription medication. I mean, there has to be some point of diminishing returns, right? I take so, so many meds. I’d list them here but you’d probably have a hard time believing it. Also, pain medication just scares me. I’m definitely the type of person who would be inclined to abuse medication like that. If one pill helps, I bet two pills help so much more! I just know myself. It’s not a good idea.
I started to feel pretty dark. I think you could probably tell from the posts throughout 2017. I tried to keep my humor about me. I always reminded myself that there are people who have it so much worse than I do. That I should be grateful every minute of every day. Thinking those very true things didn’t really help much. Knowing other people are suffering doesn’t make your pain go away when your pain is a physical, menacing presence like a fire burning inside your skin that nobody can see but it feels like it might consume you. It just doesn’t help.
Friends I’d made online suggested to me that I consider trying cannabis for my pain.
I mean, I’ve read and researched a ton about this possibility and I truly believed it had merit. I already used some homemade cannabis edibles to help me sleep at night (I will never reveal where I get them but suffice to say, the person who makes them for me is a literal angel on earth).
Then there’s that one small detail I couldn’t get around. Cannabis isn’t legal here in Pennsylvania. I know we’re in the process of legalizing medical cannabis but that’s a process that takes a lot of time. I’d heard a bit about how hard it was to not only get the card you need to become a patient but then to get supplies from a very limited number of dispensaries. Oh. Also, as you might suspect, The Great Scott (my MS specialist) is 100% against medical MMJ across the board. Shocker.
But there is more to this struggle than those very factual, legal hurdles.
There is the fact, proven over 50+ years of life, that I freaking hate weed. I hate how it makes me feel. I hate how it smells. I hate smoking anything (except for that very short spurt with menthol ultra lights in my thirties when I was drinking my face off five nights a week…that was fun). I found weed basically repellent. It had a terrible effect on me.
It used to be a thing between my husband and I, when he was alive, because he smoked pot every day of his life. He knew I hated it but not because of any ethical or moral reason but simply for the fact that as soon as he took one hit of a joint he instantly became repellent to me. I can remember telling him, “You know, they call that shit dope for a reason. Gross.” And he would laugh and laugh. But I digress. Suffice to say, me and marijuana are not friends. I couldn’t really see it becoming a fundamental part of my life.
I watched how much it was helping some of my MS’er friends. Meg, in particular, inspired me. Watching her joyful face as she chronicled her daily walks on Instagram – noting that this new found joy for walking had been something she feared she lost forever! But not anymore. Meg credits cannabis with giving her her life back. You should read Meg’s blog. She knows so much more about medical MMJ and MS than I could ever share here. Check it out. But the smile on Meg’s face was making me really happy and haunting me all at the same time. I wanted to smile again. I wanted to smile again without the smile feeling like an internal grimace.
I remember telling some of my MS friends, “I wish I could get the benefit of the relief without the high! I’d do that in an instant.” Um. Guess what?
You totally can!
We’ll stop here and I’ll admit that I’m not entirely comfortable writing about this. I haven’t told many non-MS friends about this. It makes me feel funny – even though I’m doing something completely legal and non-psychoactive, it still bothers me. I haven’t broken this news to my mom or members of my family. I’ve told my closest friends, the ones I trust the most, but I’m not sure why this feels like such a dirty little secret.
I’ve been using CBD to relieve my pain and it’s hard for me to admit this in writing but it’s starting to really change me in all the very best ways. I started this whole exploration looking for relief from the pain and I indeed found that relief.
But I got a lot more too. Let’s start at the beginning.
I started with CBD oil from CW Hemp in Colorado. I had seen a story about these guys on CBS Sunday Morning years ago. Here’s a link to an excerpt from a CNN documentary that tells the story of Charlotte. This kid was having 300 seizures a week. The story is heartbreaking but it had a very interesting and happy ending. The CBD oil made by the Stanley Brothers in Colorado changed Charlotte’s life (hence the name of their company in her honor). It was worth squirting some pricey, nasty tasting oil under my tongue a few times a day to see if it could help my pain. AND IT DID. It took a while to come over me, but about a half hour after taking the oil, I felt the pain get quiet. It didn’t disappear immediately, but it got better. I started with their “everyday” product but it wasn’t strong enough for me. I progressed quickly to “everyday advanced” and that was much better.
Better was enough for me to dive into more research.
I discovered that for my kind of pain, the degree and severity, ingesting CBD oil is not the most effective way to get the Cannabidiol into your blood stream. By the time the oil is ingested and processed in your digestive system, through your liver etc. it’s down to something like 15% CBD. I’m fudging numbers here a bit but the reduction in concentration was distinct. I had to find another way to get the cannabidiols into my system without using the oil as the mechanism so the cannabidiol concentration would be higher.
This led me to another (100% legal) product called CBD shatter. Shatter is crumbly. A clear solid that breaks up into little pieces. To get the CBD into your blood stream most directly, I had to get a vape pen to use with it. Here was another hurdle! I know I had that short stint as a smoker in my thirties but it sucked. Literally. I hate smoking anything. I know I’m vaping (not technically smoking) but it feels essentially the same to me. I inhale vapor that comes from heating the CBD shatter in my vape pen. It looks very much like “dabbing” weed concentrates – but this is devoid of THC so there’s no psychotropic effect. I had been really skeptical about that so when it turned out not to get me high, I was super relieved. I found another form of even more highly concentrated CBD in the form of a wax.
Here’s the thing…I will share info with anyone that wants it in messages or emails, but I don’t want to do that here. I’m obviously not a doctor nor an expert on anything related to CBD vaping. But I am here to tell you that I’ve felt happy for the first time in a months these past few weeks. I haven’t thought about taking a pain medication of any kind in over a month. I was buying Advil liqui-gels in bulk! Not anymore.
There was an even better after-effect of my new practice. That constant churn in my head. The fear that nothing will ever be the same. The constant “what ifs” that fly around my head quite literally 24 hours a day, even finding their way into my dreams. The ever present and sometimes crippling anxiety about what my future could hold…it’s quiet. It’s so very quiet.
That anxiety voice is still there, I know it is. It will probably never go away completely. I mean, when you have a disease that is chronic and degenerative that’s kind of the deal. Especially one as unpredictable as MS where literally things can change from day-to-day, even minute-to-minute. Having that yoke hanging around your very unstylish neck is a difficult business. Things that make that voice quiet have eluded me completely. And I’m a therapy expert! Ask Cheryl.
CBD vaping is helping me. It’s helping me a lot. I hate doing it. It still feels wrong to me even though I know it’s not. I hate how it tastes (some people actually love it! Go figure.). But I’m doing it three to four times a day to help me maintain my calm, quiet mind. To help me keep the fire in my body at bay. Even to help me loosen up these ridiculously spastic muscles that prevent me from moving around in a more natural way. It helps…nearly everything.
So there you have it. My dirty little secret. It’s really not dirty at all! I wish I knew why I’m so judgey! Mostly of myself. Maybe Cheryl will cure me of that some day but until then, I’m just trying to learn to accept things as they are.
And yes, I will be discussing this entire development with The Great Scott and I am already steeling myself for the medical debate that will surely ensue.
But here’s the thing. I’m on the mac daddy of MS drugs right now (Ocrevus). It’s not been the life changing experience I had been told it would be. It’s been just…meh. If something else helps me want to open my eyes every day, maybe leave the house a bit more, embrace the damn cane (sorry Stanley) and perhaps shower a little more often? I’m down with that. In all of my research I can find very little down side to vaping CBD. I’ve experienced exactly zero side effects. None.
It might not work forever. So I’m going to enjoy it while it lasts. I’m going to deal with the fact that I can’t really carry it around with me – it might be legal but it doesn’t LOOK legal – so I can only be pain free for several hour intervals but hell, that’s more than I had before! I’ll take it.
I feel like that little tree, up there in the picture, a lot of the time.
I try to keep things light and airy but I don’t often feel light or airy. I make the jokes and brush off the badness. But I feel dark and alone so much more of the time (even while surrounded by people who love me, both near and far).
A little ray of light seeping in is most welcome! Even if I have to suck it in through my lungs. I’d eat rocks right now if someone told me they’d make me feel better. You can bet on that.