It’s embarrassing to have to admit you were wrong. Yet I think that’s where I’m at, now that I’m getting on board with the mainstream medical treatments for my MS.
In retrospect, there was so much confusion regarding my specific brain issues from the start that going on the disease-modifying drugs wasn’t really mentioned to me until after I had my really bad relapse in August 2017.
I chose not to go on them because I was scared of how new the Ocrevus was that they wanted to put me on. I’m still scared of that drug. They suggested Copaxone as an alternative when I balked, even though in trying to sell me on Ocrevus they had previously told me why they didn’t think Copaxone would work for me.
Considering the fact that Copaxone requires giving yourself injections and having site reactions where the tissue just dies, I was more than a little reluctant to put myself through that when they didn’t think it would be effective anyway.
So here I am about 18 months later, getting ready to go on a different disease-modifying drug. I don’t know if it will help. I have heard nightmare stories about the side effects and don’t know what the next few months hold for me. I kind of feel like I am bracing myself for the worst.
But I have to do this in pursuit of receiving disability. And what I realized is that being required to do it takes away the agonizing choice I had to make before. I was researching it to death, getting myself worked up into a state of analysis paralysis. I could find just as many terrifying things about the drugs as reasons to take them, so I just opted out.
Now that I’m looking at it from the other side though, I’m also realizing how much of my fear about the meds actually came down to a belief that I wasn’t worth it. I also didn’t have enough hope that anything at all would help me. In many ways, I think I was viewing my MS as a death sentence.
Of course, it really didn’t help that so many doctors were telling me how bad it was. I think that also contributed to my denial: how could my MS be as bad as they said it was if I could still walk?
But I’m starting to look at what it could mean if these meds work for me. Maybe I wouldn’t have to avoid going outdoors while the sun is up all summer. Maybe I wouldn’t have to predict that I would have a relapse every August. Maybe I wouldn’t spend three months or more every year recovering from a relapse.
I notice how much it challenges my long-held preferences for natural medicine, too. I used to be really big on using natural medicine for a while when the kids were little, though they still got vaccines and Tylenol and antibiotics when needed. But I’ve always been a little distrustful of mainstream medicine.
At the same time, the fact that going the natural route didn’t help me makes me feel like I failed. If only I were strict enough with my diet and exercise, I wouldn’t be sick. Why was it so hard to be strict with my diet and exercise?
That fact also makes me a sucker for documentaries aimed at people who say you can treat anything with diet and exercise. I always say I wouldn’t take that approach if I had cancer, but how is it much different with MS?
Well, I can answer that pretty easily by saying that cancer treatment is toxic but it aims to cure the disease. MS treatment doesn’t cure the disease at all, it can just slow down the progression. In theory. If you find the right one.
But I also find that even though I’m realizing the natural approach to treat MS isn’t really working, I still don’t trust mainstream medicine any more than I ever have. It seems like in order to treat one problem, it often causes another.
For example: I’ve been on an antidepressant for a couple weeks and it seems like it is indeed improving my mood and motivation. But I confirmed that it is also raising my blood sugar to diabetic levels. Since I have a history of being borderline diabetic and I avoid having a lot of sugar as a result, this scares me more than a little. So do I stay on the antidepressant that seems to be working otherwise (which is unusual that any antidepressant ever works for me) and accept becoming diabetic as a result? Or do I go off the antidepressant for the sake of my blood sugar?
What kind of unexpected trade-offs will I find with the disease-modifying drugs?
I know that at least for me, there’s no such thing as a drug that has no side effects. Most of the time, the side effects are worse than what the drugs are trying to treat. Maybe I’m just a bigger baby about side effects than the average person, but I also believe that the drugs are a partial solution at best.
I wish I could be healthy enough that I didn’t have to take anything. I honestly believe that the more meds you have to take, the sicker it makes you. But it’s sometimes hard to tell which is the real root cause, the illness or all the meds.
But this time, with the disease-modifying drugs, I don’t have a choice except to stick with it.
I just hope it will be okay.