The Sacrifices We Make To The Medication Gods

I’ve been a bit absent from blogging lately because I’ve been waiting to get some closure on some issues I’ve had with Methotrexate (MTX).

MTX is the first medication from which I’ve seen tangible improvements in my arthritis. My pain is greatly diminished, and my joint mobility has visibly increased. So you’re probably wondering, is there a “but”? Yes, unfortunately, there is…

My rheumatologist’s office called me a few weeks ago to tell me that my white blood cell (WBC) count was low. Then they called last week to tell me that my WBC count was still low and my liver levels were up.

So off the MTX I went. A week and a half off of it, my elbows won’t bend all the way, my fingers are stiff and swollen, and my right hip is back to hurting on a daily basis.

I’m not going to lie. Being on MTX hasn’t been all butterflies and rainbows. There’s the tell tale nausea and dizziness. And I’ve gotten to a point where I wonder whether sleeping my life away is worth not being in pain. It causes the kind of fatigue that no amount of coffee can kill, the kind of fatigue that you have to submit to because it’s too great to fight it.

That’s why this situation has been all the more frustrating. Aside from marked fatigue, I have felt pretty good. So why couldn’t things, just once, go smoothly? It’s so frustrating to find a drug that actually works in some ways, but is simultaneously killing you…

So I’ve been going to the hospital once a week for the past six weeks to get my labs drawn. That’s not the ideal thing to try and diminish the primacy of illness in your life. It gets really old, really quick.

(And to add insult to injury, my doctor’s office somehow managed to give me the wrong lab requisition form, so I had been getting the incorrect labs done for several weeks. But that’s a whole other story…)

I am certainly not someone who loves to be on meds, especially the heavy duty ones I am currently taking. But I know that I wouldn’t be functional without them. Every time I have a flare, I’m reminded of just how bad things can get, and the meds seem like a small price to pay.

And oh, there are the sacrifices that come with prednisone. But the thing is, as much as I hate the side effects, I am always reminded of its wonders when I’m experiencing crippling pain – and I finally have to concede and take it. A few hours after I take it, I no longer feel like my body is made of lead. I know that prednisone doesn’t work this way for most people, but for me, I can take 10 mg. every once in awhile and I seem to be able to fool my body into thinking that it’s going to be getting more soon, but it doesn’t. And I always feel like an immobilizing weight has been lifted off my shoulders.

It also seems to me that any medication that says it will cause lack of appetite has that effect on me. Or causes really weird food cravings like my fixation with baked Cheetos, boxed macaroni and cheese, and orange juice – viva la orange – which thankfully, has finally gotten to the point where the combination is no longer appetizing and just makes me nauseous. Because that was a weird phase for awhile.

And lately, I have been so spacey. I can only hope that blaming it on MTX is truly the problem. In my first few weeks on MTX, I screwed up the appointment days/times of four appointments. That is not like me at all. But maybe my brain has ceased to function when it is not working on overdrive to cope with pain.

What I wish healthy people understood, is that none of these drugs are a cure. Every medication has its pros and cons, and I don’t think it’s ever an easy decision to make to start a new medication, especially one that is more aggressive than anything else you’ve tried.

It’s like, if the disease doesn’t kill you, the medication will. But society doesn’t view people who are on a lot of medication, for whatever reason, in a positive light. I was particularly frustrated watching “The Biggest Loser” a few weeks ago. The main doctor on the show made the main goal of achieving health to be being on as few medications as possible. It’s a nice thought, but in reality…

And all everyone seems to want to know is when I’m getting off MTX. I don’t know, and honestly, right now, I don’t really care. Yes, I would very much like to get off the meds, all of them, but right now, to me, feeling good is more important than some lame goal of banishing as many medications as possible from my medicine cabinet. I need to get my health in a stable place, which it hasn’t been in for the past several years.

I wish I could have the illness disclosure conversation and say that lupus and rheumatoid arthritis rear their ugly head once in awhile, but other than that, they don’t mean much. But that’s not the case. So for right now, for me, living well means taking a bunch of pills everyday in the vain hope that I can lead a semi-normal existence.

I heard from my doctor’s office yesterday that my labs (finally) came back normal. What a relief!

So for now, I’m back on MTX, and redoing labs in two weeks. We’ll see how long this love affair lasts…