Let me be honest: I find side effects totally insulting.
Most of us with chronic illnesses take a whole lot of medications. Most of those medications come with a long list of side effects. As patients, we are forced to decide (more often than most people) whether the risk is worth the reward. We must choose whether possible liver problems are worth relief from joint pain and swelling, whether mood swings are worth relief from inflammation. Constant choices. It’s exhausting.
I have learned to read ALL of the patient information on my medications. I google them all and check multiple websites. I make sure I know the rare side effects as well as the common ones. I check for medication interactions before I take anything new. Oh sure, I believe my doctor is smart and knows what the best treatment is for my RA and fibro, but I also believe mistakes happen. I believe that my health care is ultimately my responsibility. So I research, double check, triple check. That too is exhausting.
But neither of those is why I find side effects insulting. I hurt all the time. I am tired beyond tired. I am weak. I get depressed. So I take medication to help with those things. Sometimes the medications help a lot, sometimes not at all. But…all of them come with great big side effects that I must learn to live with.
So, on top of being in pain, being tired and weak, having depression, I now also: have difficulty sleeping (side effect of Welburtrin AND prednisone), have mood swings (prednisone), am a bit foggy brained for part of the day (Lyrica), have fish burps (fish oil), have occasional stomach issues (naproxen), and most fun of all, have a day or two of horrible fatigue and nausea (Methotrexate).
Those are my regular side effects from my medications. What about the possible long term ones- hair loss, bone depletion, liver failure, kidney problems, ulcers, cancer. Fun!
Is all that worth it? Yes, probably. I am not sure how I would feel without all the chemicals. Probably horribly depressed and unable to actually move. So yeah, the side effects are better than that life. But here’s the thing I wonder, the thing that makes me get upset and insulted:
if scientists can figure out how to make these meds, can cure cancer, can find ways to travel to space, can do all the amazing things they can do, why in the hell can’t they make medications that don’t make us so miserable? I know I’m asking a lot. I really do. But wow, those of us who have to take so many medications, so many really strong medications, have too many side effects. It is TOO much, and I think scientists and/or drug companies should start thinking about chronic illness and chronic care in a different way. Don’t make a pill that trades joint pain for cancer!
Ok. Rant over. As you might have guessed today is my post-MTX day, aka day from hell. Day of fatigue, nausea and headaches, despite doubling my dose of folic acid. But…I will stick with it. Because if MTX works (in another two months, we may know!), it will likely be worth one day of hell if it gets me six days of functional.
And now I am going to bed.