On Being Mortal


One of the scariest things about having a chronic, degenerative disease is knowing that said disease or some complication of said disease is going to be what kills you. The medications I take and the way I take care of my body are only slowing down an inevitable process. That process could take decades, that process could take years: there is really no way of knowing. Yes, you could say that everyone is fighting against that same battle. We are all going to die of something at some point, duh! But to actually have a name to it and be face to face with it every day is a strange feeling.

I’ve been on chemotherapy shots for over a year now to treat my psoriatic arthritis. Aside from the nausea, fatigue, and bruising it seemed to be working! My joint’s didn’t swell as often, my pain was not constant, and my skin psoriasis cleared up. Hello, wonder drug! Don’t worry about the fact that I have a cytotoxic agent stored in my bathroom, a bucket full of used needles, and I have to be 110% cautious to not accidentally get pregnant as the effects to the fetus would be catastrophic. But, hey, minor details right?? Well, it’s not working anymore. My pain is back, my joints are swelling, and that stinkin’ little patch of psoriasis by my right eye has reared it’s ugly head again.

Luckily, there are other meds we can move on to and try. And I am so thankful to modern medicine that this is even an option. I have several more medications I can move through before it gets to the point where we have ‘tried everything’. Some people say this next drug I’m going on is a ‘wonder drug’: they felt great, they had good results, etc. That’s all fine and dandy but each person is different. I could try it and have terrible side effects. I could try it and it could not work for me. I could try it and it could only work for a few months before we have to move down the not very long list of meds to treat my disease.

It’s that unknown, that darn unknown, that always gets me. I’m a planner. It would be nice if I could be like: “Ok, methotrexate worked for a year. Now we are going to do Humira for 15 years before we move onto Otzela for a while then Remicade infusions and then I’ll happily die in my sleep at age 92.” But there is no way of knowing how my body will react to each med or how long it will work for me. I try not to dwell on it, but this is big stuff. Kind of hard to ignore that crippling, debilitating elephant in the room.


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