And my arm. Bumps on my arm.
Let me back up.
I’ve said before that I wish I’d started this blog sooner, perhaps before and during the diagnosis process, so that you could all come along on this journey with me and experience things as I experienced them. Instead, I started this blog last November–after three years of wearing the MS label and after the absolute circus that was finding the right doctor and treatment plan.
Well, the day has come. There’s a new curveball and I’m about to serve up some realness.
As you may have read in my post about treatments I’ve already tried, I’ve been on Rebif since last June, with a couple dosage adjustments along the way. Out of everything I’ve tried, I’ve been on Rebif the longest and I thought I finally found the treatment plan that is right for me.
This past weekend, I started breaking out in a weird hive-y rash thing on one of my forearms. It flared up twice–both times, two days after injecting–and it’s never completely gone away. It’s not nearly as bad as the ear-to-ankle welts that Tecfidera gave me–not even close–but…it’s still far from optimal.
I figured it can’t possibly be due to the Rebif. I mean, my body surely is used to it after nearly a year, right? Even with the fairly recent increase in dosage, I feel like my system should be fully acclimated by now.
So I poked around Rebif’s website and found this little nugget:
I try to keep this blog uplifting and I think I do a pretty good job of that…but right now, I’m a little scared. Or maybe “discouraged” is a better word to use. I feel like I’m running out of viable treatment options and it is so taxing to switch to a new medication. Yes, things could be so much worse, but this is just really starting to get old.
Virtually any system in your body is fair game for MS to attack and people with diseases like MS are prone to having more than one autoimmune disease. FANTASTIC.
So it’s a never ending game when new things pop up. Is this an MS relapse? Is this an adverse reaction to my medication? Is my immune system getting bored and is this a symptom of some other freaky disease? Or is this just a simple circumstantial and temporary inconvenience like normal people get?
This is why things like Walk MS and other large fundraising events are so important to me. We are so fortunate to have as many treatment options as we do–so many more than the generations before us–but they don’t work for everyone. We need more research and more options (If you are interested in donating and would like to sponsor me in this year’s walk, you can do so here.).
Anyway, please don’t misinterpret this post as a “poor me” call for sympathy. As I said, I try to keep these positive. I’m just…tired. And frustrated. And writing in the moment. Allow me this poopy day.
Installments to follow.
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