This week, Daniel chronicles two weeks in his life -- the life of a patient with rheumatoid arthritis (RA).
This week, I was at a loss for what to write about. I have been penning this column for about two years now, and that adds up to almost 60 posts. As you can imagine, coming up with topics for sixty articles can be challenging, especially since my life is more or less routine. I don’t chase after super-villains or host a game show for a living – I’m a writer, as you all well know. So, with nothing to write about, I decided to write about nothing. Just like the TV show about nothing that became a hit, I’m going to write this column about nothing in particular at all, and may be some of you will obtain some insight into just what it takes to live with R.A.
For those of you who haven’t been paying attention, my girlfriend recently moved in with me. As you can imagine, that meant packing up her apartment and moving some of her stuff into my place. The majority of it, though, is sitting in storage until we can get a bigger place together. Because we knew this ahead of time, we had to make sure all of her belongings were packed into boxes and wrapped in bubble wrap in preparation for up to a year in a dingy, damp, dirty, ten by ten metal room. This translated into a week of early mornings and late nights lifting, reaching, and re-organizing. Anyone with Rheumatoid Arthritis can tell you that lack of sleep is the quickest way to incur a flare up, and if you add physical exertion on top of it, you are pretty much guaranteed to be in pain. Knowing this, and despite the protestations of my girlfriend, I continued to help with the packing and moving until every last item was locked up in the storage unit. I was rewarded for this perseverance with a grapefruit-sized right ankle.
Now, the best thing to do once a joint acts up is stay off it for several days and ice the joint down as often as possible. Being the ever-stubborn individual that I was, I simply slapped on an ankle brace and went about my business. I even went out this past weekend for an entire day Saturday in order not to disappoint a close friend. Surely not the best plan of action, you say? Well, you are right because now I am in constant ankle pain, and a new worry is beginning to weigh upon me.
The fact that the efficacy of my medicine may be lessening is weighing upon me greatly. With spring about to burst onto the scene, it would be a fantastic gift to be able to enjoy the warmer weather one more time without limping all over the place.
As I went to therapy today, I realized that my ankle was hurting more than it should. Even though I was only giving it a small amount of rest, I shouldn’t be in this much pain, I thought. I remembered previous times that my ankle had hurt and it should have been subsiding by now. This could mean one of two things. Either I was getting sick, or my medicine was finally, and after long last, no longer functioning at its peak efficiency. I immediately started on antibiotics in order to deal with the first eventuality, but I knew, deep down, that I was not ill. That meant it had to be my medicine. “Ugh,” I thought, “after all this time, could the old curse of medicine not working for more than a year and a half be rearing its ugly head?”
As I sit here and compose this piece, the fact that the efficacy of my medicine may be lessening is weighing upon me greatly. The Kineret injections I have taken for many months have allowed me to live a semi-normal life, and led to me finding my girlfriend. Now, with the Spring about to burst onto the scene, it would be a fantastic gift to be able to enjoy the warmer weather one more time without limping all over the place. I am hoping that the last batch of injections I received may have been compromised in some way. It may have happened when the delivery service failed to provide them to me in a timely fashion and the dry ice inside the packaging evaporated. If that is not the case, I truly do not know what the next step will be. I simply cannot increase the level of my steroids again, not only because of the bloating but because the damage to my bones would be catastrophic. I am already dealing with the effects of massive osteoporosis with a height reduction of almost four inches. How much shorter can I get? Soon I will be singing Hi-Ho and carrying a pickaxe to work.
In addition to all of these wonderful problems that are weighing upon me, I have also scheduled the procedure to get my defibrillator installed. In about a month from now, I will go under the knife in order to take yet another small step toward my full conversion to cyborg. The defibrillator unit being installed, as I found out, not only consists of the unit that is inserted under my skin, but also includes a counterpart that transmits data over the Internet to my doctor whenever he requests it. Talk about keeping tabs on someone! Any time I want to transmit my vitals I simply have to press a button.
My disease is always weighing on my mind, impossible to escape. This is why people like us are always learning new ways to live with our illness, and discovering new methods of incorporating the aspects of the disease into our daily lives.
As if that weren't enough, I was also told that during the procedure, my heart would be purposefully thrown into an arrhythmia in order to test the defibrillator’s ability to stop such an event. In layman’s terms, the doctors are going to put me into a potentially life-threatening cardiac situation on purpose, just to test the batteries in my defibrillator. If it doesn’t work, well, you can guess the outcome. If it does work, though, I get a 20-joule shock right to the heart. I’ve been told it is a feeling very similar to being punched in the chest by a gorilla. Fun! Hard to tell which one is worse.
So there you have it, a simple two weeks in the life of someone like me. My disease is always weighing on my mind, impossible to escape. This is why people like us are always learning new ways to live with our illness, and discovering new methods of incorporating the aspects of the disease into our daily lives. I truly hope this helps those of you who are healthy gain some insight into just what we do all day.