December 16: Choice: Being an adult means making your own choices. What choices were the hardest to make this year?
I look healthy.
I run marathons. I do yoga. I go to spinning. I do all the things that healthy people do. I travel; I climb mountains. I’m outdoorsy; I’m sporty.
I’m also…seriously ill. Which is not something that consumes me, but is something that is never far from my mind, either. So in March, when my rheumatoid arthritis had flared significantly enough to make it almost impossible for me to use my dominant hand, I had to make some choices.
You see, I am relatively healthy because I am conscious and I manage the disease carefully. This isn’t…magic. On average, I take 10 pills a day, sometimes more. I plan my diet to err on the side of being “anti-inflammatory” without being “triggery.” My blood is tested every four weeks. I give myself bi-weekly injections of a biological drug — a TNF blocker — to minimise inflammation and joint damage.
In other words: This is not a joke. This is not a test; this is not a scheme or a scam; nor is it “not a big deal.” This is the real thing.
But because I do manage myself so carefully, and I am already on a serious regimen of medications, my options in handling that flare were not hugely appealing. My choices were: submit to a course of chemotherapy, AND/OR change my biologic to an infusion medication.
Just so you know: biologic drugs suck. They’re miracle drugs, but they suck. Nobody quite knows what they’ll do to you in the long term, and in the short term, the side effects and risks include things like tuberculosis and cancer. And it should be a no-brainer to tell you that chemotherapy drugs suck, too.
After much careful consideration, I picked a course of methotrexate. This drug had been used in treatment of RA for a long time, but carried a number of additional risks. And In the short term, because of my medical history, it carried additional risks for me as well. But the upside was that the change in drug regimen had potential to force a remission fairly quickly. The downside was, well, see above…and also, the litany of side-effects the product packaging rattled off.
It was not a choice I ever wanted to make. It was not a good choice or a fair choice. But it was a necessary one. When I picked up the prescription, I slumped outside of the pharmacy, distraught, knowing what the medication would do to my body — how the cure might be worse than the disease.
It was…frustrating. It seemed…unfair. I was young; healthy.
Or at least I seemed that way.
And seeming that way meant that there was a lot of telling me to suck it up; deal with it; grow up; stop whining. Even when I was so sick I couldn’t stand; even when some reaction I had to the medication kept causing my blood pressure to drop and kept causing me to faint. Even when my mouth and nose were so full of sores that I could hardly eat solid food.
That was how I spent my Spring.
I’m not angry for having had to choose — if anything, I am well aware that many, many people have it worse than me. I am glad the worst of the ordeal is over; glad that the course of therapy worked; glad that the drugs forced a remission and my body began to right itself in relatively short order. I am one of the extremely lucky patients whose disease was caught almost a decade ago when it was in its early stages. My life is open to choosing a world of new treatment options as they develop; the odds that I’ll ever be seriously deformed are slim.
But I also get to choose the people with whom I surround myself, and I suppose an experience like the one I had earlier this year — fainting; vomiting; at times, physically unable to do things for myself — teaches a girl how to better hone her selection skills.