Choices – Living with Rheumatoid Arthritis
Written by Daniel P. Malito on February 15, 2011
Everyone knows that living with a disease like Rheumatoid Arthritis is a day-to-day struggle. It is common knowledge how things can go from bad to worse in the span of a few hours, but it is hard for those of you who don’t suffer from chronic illness to grasp just how much that affects a person. All the factors that go into one tiny decision can boggle the mind. Hopefully I can give you some insight into how it works.Originally, I had planned to write today’s column on another subject, but over the last two days I have been on one of those oh-too-familiar rollercoaster rides that goes hand in hand with RA.
Surgery – for me the word always brings a mix of relief and doubt. I know that the procedure is going to help me in the long run, but with the medications I take it can also be fraught with complications.
The story begins many years ago when I inadvertently fractured my left foot. I think. Even though a fracture seems to be something one would remember, I have to take the doctor’s word because I don’t remember. One of the unfortunate side effects of taking a high dose of narcotics on a daily basis is that your threshold for pain increases exponentially. Add that to the fact that my feet and ankles were always one of my most active areas of arthritis, and you can begin to see why I might not have noticed injuring my foot.Fast forward to about two years ago. My left foot had always been a bit misshapen, but suddenly the deformity started to accelerate. My foot went from being slightly curved towards the right, to being bent just like a banana. In addition, the top of my foot developed a mound of bone over the old fracture, and the left side of my foot developed a protrusion next to my pinky toe. It got so bad that I was unable to fit into shoes any longer. I had to wear slippers, sandals, or a pair of sneakers I had cut holes in the side of.The general consensus is that the prednisone somehow affected the bone re-growth when I originally fractured the foot. When I began to take a much higher daily dose of the steroid a few years back, it caused the accelerated abnormal growth and deformity. Whatever the cause, it became a problem I could no longer ignore. Most of you take it for granted that you will be able to find shoes that fit your feet and never think twice about it. Well, if you were unable to find anything at all to wear as shoes, what would you do? Not an easy question to answer, is it?My first visit to the podiatrist was uneventful. The doctor was reluctant to turn to surgery as the first option, so he referred me to a prosthetics maker who designed molded shoes. Well, to make a long story short, not only did the shoes look like Frankenstein’s work boots, but they cost over two thousand dollars as well. Needless to say that option was not viable. So, I returned to the podiatrist and we decided to schedule surgery. The procedure was going to take care of both issues – the bone mound on the top of the foot, and the protrusion on the left side of the foot. Surgery – for me the word always brings a mix of relief and doubt. I know that the procedure is going to help me in the long run, but with the medications I take it can also be fraught with complications. The wounds often received during surgery represent a trauma to the body, and all the internal systems must work in concert to heal the breach quickly and correctly. Well, when you take drugs every day that suppress the immune system, recovery can be tricky. That’s not even considering the chance of after-surgery infection. Sufficed to say that I am the person who should avoid surgery at all costs.Well, I had the procedure done. The bones of my left foot were “de-bulked,” as the surgeon called it. Because of the danger of complications, I had to suspend my rheumatoid medicine for a week before and after the surgery. This is always a crapshoot as past experience has taught me that the longer you take a break from medicine, the less chance it has of working when you restart treatment. Unfortunately, I have to weigh the options and decide which has less of a chance of actually happening – surgical infection or my medicine not being as effective as it was before I stopped taking it. I chose the latter, and stopped my medicine a week or so before the operation. This meant a seven-day-long test of pain, stiffness, and the low-grade fevers that go hand in hand with RA. It wasn’t the most pleasant week I’d faced, but it was better than a possible infection. The few times I’ve had to deal with infection, they had been six-month long nightmares.Now we are here, a month after the operation. My foot is not healing as fast as we had all hoped it would, and it looks like there may be an infection stirring. I immediately began treatment with antibiotics, and my foot seemed better for a few days. Now, though, I can feel the changes in my body that happen when I am getting sick. Since I am already on antibiotics, my only choice is to stop the Rheumatoid Arthritis medications once again. The immuno-suppressants need to be removed in order to give my system a boost to kill whatever bug is festering inside. Other than checking myself in to the hospital for high-powered intravenous antibiotics, there is not much else to do.Do nothing and risk serious problems or cut out the medicines killing my immune system and hope it’s enough may seem like an easy choice, but there are so many other factors to consider. I know when I stop the medicine, my immune system will come back tenfold. Since my body knows it usually has to pump my immune system up to level 10 just to get a small response, it does so once again. Except this time, there is no medication to stop my immune response from reaching level 10. This translates into a sustained fever that lasts for hours, extreme soreness in and around all of my glands, and a mild nausea that never seems to go away. But, it’s still better than an infection. Right?I hope I was able to convey how much thought goes into a decision as small as the choice to take a few days off from my meds. It took the entire space of my column just to fill you in on most of the factors involved in such a choice. If I was to detail every single part of my checklist when making a judgment such as the one described above, it might take three column’s worth. Every single thing I do has to be checked and re-checked for its effect on my illness. Sure, you learn to live with it, but it gets tedious at times. Now, if I can just decide what to have for dinner…