I take ten pills, every day. In two weeks, it will be eleven, when the riluzole dosage increases.
An anti-depressant, twice a day. Riluzole. Two prednisone. Vitamin D because I live in Oregon and the sun is a rare thing. Iron because I’m always getting deferred from giving blood for low iron count. Vitamin C to help absorb said iron. Magnesium to help with the cramps. And an all-purpose multivitamin – dinosaur shape. Because fuck yeah, dinosaurs.
There are three other meds I take on an as-needed basis, ativan (which is new), ambien, and flexeril. The flexeril is for when the daily headaches I get become so horrible I just want to sleep. I don’t take that one much at all, mayyyyyybe once every other month. The ambien I’ve mostly been using because of the nighttime cramps I get. No more than twice a week, ever. And then there’s the occasional OTC pain killers for the daily headaches when they get obnoxious and I just want to take the edge off. Which is maybe once every other week, but I make a concerted effort to not take them if I can help it so as not to build a tolerance. If I took one for every headache, I’d fuck up my stomach and have no liver.
So many pills. All of them to deal with one specific aspect of the fuckery that is my body.
And speaking of bodily fuckery: of all of the symptoms of ALS, the cramps bother me the most, so far. It sucks having a hard time walking up stairs, sure, but when I am just trying to sleep and my ankles turn in and my calves craaaaaaaaaaaamp the fuck up, that is RAGE inducing. Sleep is my favorite thing. You do not fuck with my sleep. Sitting on my bed, reading comics with my cats, and a sudden random sneeze (I sneeze more often than anyone I know, and almost always in threes or fives) will cause my sides to cramp up like the worst runners’ stitch ever. A really good morning streeeeetchOWOWOWOW MY FUCKING BICEP WHAT THE HELL. I’ll sit cross legged on the floor and the muscle above and behind my knee suddenly tells me to fuck off and sit some other way. FOR NO REASON. I can just stand up, and then it’s fine when I sit back down. One time I was walking up the stairs and the back of my thigh gave the middle finger so hard I had to sit down on the stairs and wait for it to go away, which was a little embarrassing. Saturday, though, while dyeing my hair, my hands got in on the action and several times I had to stop what I was doing and press my wrists against the counter to try to unfuck my hands.
I’d hit up Dr. Goslin about the cramping in the same email as the anxiety concerns, but we got sidetracked and didn’t get back to addressing it. I sent her another email today. She responded very quickly, because she always does and is amazing, and reminded me that before we tried klonopin for the cramps (VERY BAD WOULD NOT RECOMMEND OMG), she’d mentioned neurontin. ‘It’s a medication used to treat seizures and it decreases the nerve irritability that is causing the cramps. Let me know if you want to try it. It is a very safe medication that is well tolerated except that it can make some people (but not all) feel tired or sleepy.’
And I am not sure I want to try it. And that uncertainty is ENTIRELY because of the ten fucking pills I already take every day. I have discovered that I have a real problem with this. And it’s entirely one of self-image and I need to get over myself. I’m worried about the drugs and supplements interacting, of course, but mostly it’s a problem of image – of seeing myself as Sick with a Capital S because only Sick people take so many damned pills every day, but I’m not really Sick, I just have a bit of a hard time walking so far. I mean, Sick comes later, right? It’s not now. I’m not geriatric, not clinging to a better life through chemistry. I don’t HAVE to take something for the cramps.
And I also don’t HAVE to take something for depression. I can sit around and mope and be unable to perform the simplest things like getting out of bed without a Herculean effort. That’s an option.
I don’t HAVE to take the prednisone. But it might be helping me keep some of my strength, which is helping it be JUST a hard time walking so far.
I don’t HAVE to take the riluzole. But it is extending the time I have, time while it is JUST a hard time walking.
I don’t HAVE to take the iron. I can keep getting deferred from donating much needed blood because my iron count is too low and wasting everyone’s time when I try to volunteer. And have blood like water.
I don’t HAVE to take the vitamin C. I can let the iron twist up my guts.
I don’t HAVE to take the magnesium, I can find out for myself how much worse the cramps are without it.
I actually don’t HAVE to take the multivitamin, I suppose. Or the vitamin D. I’m not sure those actually ARE doing anything, but they’re certainly not harming me and the least of my concerns. And the dinosaurs are tasty like candy.
I don’t HAVE to be a walking pharmacy and take eleven pills a day to maintain some semblance of normalcy. I am free to live without any of these things and deal with the effects of their absence.
But I also don’t HAVE to see it like that, and realize that I have the power to make my life easier in a very simple way, by just getting over myself and swallowing a couple of fucking pills.