Today’s post is gonna be a first of its kind. Today, I’m interviewing a friend of mine. Given everything going on these days, and how so much of this can and does tie into disability, I just felt that I couldn’t in good conscience ignore it. Especially when my friend first told me this story. Now, for privacy and for safety, all names have been changed to Wheel of Time characters. Taking the place of my friend will be my favorite Wheel of Time character, Min Farshaw (don’t @ me, Min is f*kin adorable as hell and could kick your ass if she wanted). I shall play the bold and dashing Thom Merillin. I’ll fill in any other names I may need to along the way with other, lesser characters.
What’s The Background To Know Ahead Of Time?
For starters, my dear friend Min lives in Ohio. And unfortunately, due to the absolute train wreck that’s the current Supreme Court, Ohio now has some incredibly, well, awful laws surrounding abortion. Furthermore, Min is quite chronically ill, just like yours truly. But more on that to follow.
And Now For What You’ve All Been Waiting For…
Thom: So, Min, can you please tell us some about your background with chronic illness?
Min: Yeah, of course! So when I was 16 I was diagnosed with EDS, Ehlers-Danlos Syndrome. Basically, what this means is that I have a lot of joint problems, to put it lightly. I’ve had a couple surgeries to try to correct some of the more major issues, I’m almost always in physical therapy for one thing or another, and I’m almost always wearing at least two different braces, usually wrists, knees, elbows. I even have some mobility assistive devices like a few canes and even a walker. I’ve got a few other things, too, but I’ll get into some of that more later on.
Thom: Besides the obvious implications of these new laws being passed, can you tell us some about how you’re affected directly by it, as someone who’s disabled?
Min: Absolutely. So one of the medications I’m on to help with my health issues, primarily my EDS, is a medication called methotrexate. For those of you who don’t know what methotrexate is, it’s a super common medication to treat a bunch of autoimmune diseases, like EDS. I’ve been on it now for I think maybe like three years ish? I don’t remember exactly. Anyways, it’s been a while. And methotrexate isn’t a cure. It hasn’t wiped out my EDS. But it’s helped me SO much. It’s a lot like you with your infusions- it didn’t cure me, but it let me have some semblance of a life back.
Thom: So, Min, tell me about why it’s suddenly an issue for you to be on methotrexate.
Min: Okay so one potential side effect for methotrexate is a miscarriage. It’s not a super common one, but it is a potential side effect. And so, due to Ohio’s new laws, my pharmacy is refusing to fill my prescription of it due to that side effect, paired with the fact that I’m 28, what they call medically “child-bearing age.” So, because I’m of an age of someone who could potentially have children, my pharmacy won’t fill my prescription because if I were to somehow be pregnant it could potentially cause a miscarriage.
Thom: So you’re telling me that you’re unable to get your life-altering medication that in no way has to do with abortions, just because of a potential side effect?
Min: Yes, exactly.
Thom: So what else can we do in this situation?
Min: Know that my situation isn’t unique. This is happening all over the country. I’m sure eventually my doctors and I will figure out some other treatment that works, but that could take literally years. Years I could continue to be on something we KNOW works. I don’t need a million people suggesting alternative treatments to me, I’ve done the reading, I know my illness. But still, these types of meds take time to have an affect, and there’s every likelihood that one won’t work, or won’t work as well. This was my “miracle drug,” it wasn’t a cure, but it let me live my life. I don’t really know at this point what we can do besides to tell people to pressure their politicians and to vote. Honestly, right now, what we can do “bigger picture” isn’t my biggest concern, I’m in the middle of survival mode, just trying to stay afloat now that I’ve got less than a week of my meds left before I’m then dumped back to square 1 of not having a treatment that makes it so I’m not in constant debilitating pain, where I can barely get out of bed or walk across the room or even do things as simple as take a shower or cook myself dinner.
Thom: Is there anything else you want us all to know?
Min: There’s actually part of this that’s really funny, where when I first went to the pharmacy I didn’t know whether I should laugh or cry because of this thing. Like I said earlier, I’ve got some other health issues too. One of those is PCOS (poly-cystic ovarian syndrome). I’ve been infertile since my late teens. Even if I WANTED to get pregnant, I wouldn’t be able to.
Moral Of The Story.
Laws have consequences we often don’t think of. And more often than not, those of us who are disabled get the short end of the stick, because our needs aren’t even considered when new laws are being passed. We weren’t considered in any old ones, either, but that’s for another day.
We also can’t always fight for ourselves. Our health sucks. So we need all of you who don’t have a flaming trash can of health to stand up for us. Now, more than ever, disabled and chronically ill people need those who aren’t to stand up and fight for them. Because our health is at risk in more ways than you know.
Until next time.
-Nick
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