Most people walk around and fear what might happen. When you live with autoimmune disease you fear what’s going to happen.
Last time, we had some laughs. It’s always nice to take a break from real life and blow off some steam. Unfortunately, though, as it often does, responsibility comes crashing back in. It’s always easier to deal with it, though, once you’ve taken a break, and it’s a good thing I had one. Therapy, my R.A., the bills, and life in general were waiting for me to pick up where I left off.
This week I want to talk about fear. I‘m not sure why, but my gut says it’s because I am getting older and closer to parenthood, marriage, and all things “adult.” It may just be me, but if I were a betting man, I’d bet that fear is universal in some form or other to all of us who have suffered with disease.
Being chronically ill for a substantial amount of time comes with a multitude of dangers. These dangers vary widely and include things like an increased risk of infection and the inability of modern medicine to treat your disease effectively. I have been harping on one specific danger lately, though. Usually I’d educate myself to help put the fear at east, but there is not much information available on the subject.
Medicine. To those of us who suffer from chronic autoimmune disease, there are not many words that can inspire as much dread, fear, joy, pain, or anxiety, as the word “medicine” can. Today there are countless medications that can be used to treat our type of illness – in fact, there is an entirely new class of drugs that wasn’t available a mere 15 years ago. My point is that there are so many different choices of medication today, doctors have a full toolbox when it comes to keeping the symptoms at bay, and even if none of the drugs work by themselves, the doctors start mixing and matching until an effective combination is found. What we don’t have is a cure.
Since I have been fighting this wretched affliction for almost 26 years now, it means I was a mere nine years old when the stink of autoimmune disease reared its ugly head. Within a year the doctors had me on Tolectin and Indocin, two different high-powered NSAIDs. Gold shots happened not long after (a treatment that has been mostly discredited as of today), and the immuno-supressants followed. My point is that medication has always been the mainstay of the fight against this disease and even if the meds didn’t perform as advertised, they still did something.
A quarter of a century is a long time to be shoveling caustic chemicals down your throat. Even if I had simply kept on using the high-powered NSAIDs, there would be consequences for their long-term use. Taking drugs like Tolectin, Indocin, Vioxx, and Celebrex for years can lead to ulcers, problems with the esophagus, and stomach and digestion issues. Unfortunately for me, I have been prescribed so much more than simple NSAIDs during my tenure with R.A. The list is too long to enumerate, but sufficed to say, if it’s out there, I’ve tried it, and I truly mean it.
Fighting a horrible disease like Rheumatoid Arthritis certainly gives you a serious lesson in dealing with and controlling pain and it also gives you perspective on emotions like happiness, relief, and especially fear. One of the most primal, most basic, and most unwelcome emotions, fear is something people like me deal with every single day.
Now, some of you may think that you know fear because you build skyscrapers or you swim with sharks, and I’m not going to tell you that your fear isn’t real – it is. It’s just that when you are ill, you feel fear on such a different level that it’s connected to the very definition of what it means to live with disease. Most people walk around and fear what might happen. When you live with autoimmune disease you fear what’s going to happen.
As I said, lately I have been thinking a lot about what is going to happen to me later in life when all the medicines I have been pumping into my body catch up with me. I have been prescribed and have seriously tried over 30 different R.A. medications – I did an informal count. Over thirty different toxic chemicals and bio-agents have entered my bloodstream and have done God knows what to my body. Sure, a few of them helped to make the Rheumatoid Arthritis a bit easier to live with, but as I grow older I keep asking myself “was it worth it?”
Anyone who is ill can tell you that when you have a disease everything is a trade-off. You are always weighing your options based on what’s good now and you don’t think about what happens later on. If your arthritis is out of control and you need to tamp it down, you take a few doses of prednisone. You don’t think about the osteoporosis that the steroids may give you later in life. If your Methotrexate stops working, you switch to Imuran. You don’t think about the fact that it may give you cancer when you are 50. You trade the immediate definite results for the future possible consequences. Don’t get me wrong – it’s not as if there is a better way to do it, it’s just the way it is now leaves many of us open to the unknown as we get older. This is why I think about it more and more each day, have I traded away my golden years for a few more days out shopping with my sweetheart? Have I given up ten years of my life so that I could spend more nights out doing nothing? If nothing else, the fear makes you want to make every day left count for something, and I suppose that’s a good thing. Lately, though, I keep feeling like I have to rush to get my life to the point where I’m making great money and I’m using my legions of fans to change the world before my time is up.
I truly hope I live to see 100 years old, but I probably won’t. My tests always indicated that my liver and other organs were doing fine, but I still suffered a heart attack. Supposedly due to the arthritis and its tendency to leave arteries looking like years of bacon sandwiches and Marlboro cigarettes have taken their toll, it came out of nowhere. Am I going to be watching my son or daughter graduate from high school one day and suddenly trip over my own liver as it falls out of my bellybutton because I took gold shots when I was ten years old? I truly don’t know, but I’m going to find a way to cope with it, just like everything else. It’s just what we do. In the meantime, I might spend a few less days doing nothing and a few more doing everything else