Does anyone else inject themselves through their clothes? Just me? OK…
I’ve come to a point (pun is very much intended) in life where I stab myself daily. That probably sounds a bit dramatic, but the statement remains unchanged. I feel like the “Jack the Ripper” of self-evisceration. After my MS diagnosis, I was started on a disease-modifying therapy. I bounced between Glatopa, Copaxone, and generic Glatiramer Acetate... I used all three, but they are essentially the same drug. It came in the form of a thrice-weekly injectable, which was self-administered. I stopped this treatment approximately 3 years ago because I started having adverse effects. I remember one instance specifically. I had just injected my inner thigh, and immediately an angry, red splotch started spreading throughout my entire leg, probably following the dispersion of the medication (Quite fascinating at the time, as I’ve never seen a reaction like that appear in real time). It almost looked like a burn, and it felt like it too. It stung horribly and was inflamed to the point of swelling. Furthermore, it’s like Satan left an assprint on my leg. Devil prints weren’t the only side effect. I also had developed some necrosis at frequent injection sites, and I now have permanent, hollowed-out sections in both of my thighs (great if you ever need a vessel to contain liquid). After careful consideration on my part and that of my doctor, we decided it was time to change therapies.
Who said chronic illness can’t be fun? Behold, Satan’s assprint. I apologize if this makes you uncomfortable.
We settled on a med that came in the form of a six-month infusion, Ocrevus. The side effects for Ocrevus, my current DMT, are much stronger and long-lived. It depletes all of your B-cells, making you immunocompromised. There is also an array of reactions that occur during the infusion and last for approximately 1-2 weeks. Not everyone has issues, but since I have been blessed with a knack for being abundantly lucky, I’ve had almost every known side effect...and some that were unknown. Interestingly enough, I had to make an official adverse reaction report. Surreal.
Ocrevus is a chemo-adjacent drug, so it’s not great to begin with, but I have to be on the longest protocol to receive it. What does that mean? It means that I sit in a chair for six hours being intravenously infused with Satan’s piss. This drug company is so good at marketing that they have effectively removed any mention of adverse reactions outside their own listing. The first time I took it, I literally thought I was going to die. During that first infusion, I broke out in hives on my face and chest, had some pretty gnarly heart palpitations, and my throat felt like it was closing off. We had to stop and restart the infusion 2-3 times, which resulted in us being at the infusion center for about 8 hours. I also failed to mention that it turns me a particularly tactical shade of green. Awesome if I need camouflage!
Later that evening, while lying in bed, I rapidly declined into a state of awful, intense misery. Severe nausea and insane back pain, paired with wracking aches throughout the rest of my body. I was lying in child’s pose to find some relief or at least appear repentant to whatever deity had cursed me with this affliction.
I have countless issues, so misery definitely loves my company. But this, this episode of anguish, was so excruciating that I felt the sweet embrace of death. It lasted most of the night, and I was utterly destroyed for days after. When I informed my care team about it, they were in skeptical disbelief. That pissed me off. I’ve talked about this before, but some health care providers love to tell you what you should or shouldn’t be feeling. When you do experience something outside their intended outcome or what they consider typical, you are often discounted. How could anything happen to a human being outside the medical norm?! I have had several doctors tell me, “Oh, you shouldn’t be feeling that; that can’t happen.” This mode of thinking was prevalent throughout my time in finding a diagnosis to what was wrong...which turned out to be MS. So, the joke’s on you! I was right, but I suppose that’s not something you want to be right about.
Today, since slowing the treatments down, I’m tolerating it much better, but I still hate this therapy. I let everyone who is “jazzed” about Ocrevus know my opinion on it. Many providers think this med is the bee’s knees. I think it’s a witches’ brew of bullshit. My problem is that every other option is just as shitty, so when my MS doc tells me I should switch meds, I gently remind her that the warnings on everything else are as bad or worse than Ocrevus. Ah well.
So by this point you might be wondering what the hell the point of this entire bitch fest is. I recently started a new medication for osteoporosis called Forteo. So far, I’m tolerating it well since I got through the initial reaction phase. The second night I took it, my face instantaneously turned a bright shade of red and was fire to the touch. It lasted about an hour and receded, so not too bad as far as adverse reactions go. The problem with this med is that I have to stab it into my abdomen daily. I have to give myself a shot every day for the next two years to stimulate bone growth in the hope that I don’t continue breaking myself from mundane tasks...like walking or jogging.
This marathon of stabbings will continue until I fulfill the obligatory timeframe of use, where I will move on to an annual infusion of bone preservation meds, which I will take for the rest of my life. I’m sure some diabetics out there are just rolling their eyes, and that’s fair. They can keep living in their awful realities; let me live in mine.
The reason for my osteoporosis, I would almost guarantee, is a result of long-term treatment for MS (eat shit, Ocrevus). Someone might say, “No, it’s probably the steroids you take to prevent reactions with Ocrevus.” OK, but I wouldn’t be taking those steroids if I weren’t on Ocrevus. It’s a vicious cycle of cascading effects of treatment. I had been diagnosed with a crappy disease, and in treating that disease, I keep accumulating more crappy diseases.
I’ll just keep stabbing myself like an idiot because I like my bones and don’t want my brain to further deteriorate. I hope that eventually we will find better ways of curing people. If you’re one of those hippies that want to tell me to start “holistic” medicine. I’ll preempt you with a “No thank you, that’s not for me.” As I’ve stated before, I don’t want to visit your hedge witch. Back to stabbin’!
Dad out.