My Life With Chronic Pain

Living with Celiac Disease means living at a higher risk for other autoimmune diseases. I, unfortunately, have two others: autoimmune pancreatitis and rheumatoid arthritis. I am younger than the average RA patient; this disease does not discriminate and can still strike at most any age. Without a doubt, RA is the hardest condition that I have to live with each day. It also seems to be very misunderstood by those around me. For those who may not know about RA it is an autoimmune condition that causes the body to attack it's joints. This causes inflammation and pain in the joints which and can lead to permanent joint damage. It can affect any joint from your jaw to your toes; it also causes exteme fatigue and muscle weakness. The disease often goes into remission where no symptoms are present, when the disease is active, it is referred to as a flare.

It's easy to read a description like that; however, the ins and outs of the disease may not necessarily sink in. Having to live RA day in and day out is a very trying feat. The first symptoms I showed were what I called "sausage fingers". My hands were swollen to twice their normal size and I could hardly hold onto anything. Simple every day tasks such as tying your shoes or even holding a fork were unbelievably painful. Slowly I started to notice pain and swelling in other joints. Walking became painful, stairs were excruciating, even chewing hurt. At the same time I became extremely fatigued. Fatigue is not just a symptom of not getting a full eight hours of sleep; and I get consumed by it. It makes me not feel like doing anything. I don't even want to get out of bed to eat, I just want to sleep. Getting up and dressed or doing anything productive seems impossible.

Since my RA diagnosis a few years ago, I have had more than one severe flare. One in particular that stands out; it was the first time reality really started to sink in... That the disease was limiting my ability to function like a normal, healthy person. After church on a Sunday morning I went with some friends to Outback Steakhouse for lunch. I was starving and ordered my favorite salad. When the food arrived I tried my best to eat but I just couldn't. The silverware was to heavy for me to hold, my fingers were in excruciating pain trying to stab pieces of lettuce. It took all the strength I had not to completely lose control while I was sitting at the table. I don't think I even ate ten bites of salad before I gave up. By the last bite the fork was so heavy and my fingers were hurting so bad it made my hand shake; my bite barely made it to my mouth. I waited until I got to my car and then the tears came. I felt frustrated and hopeless.

It is events like this that are overlooked when discussing rheumatoid arthritis. Being in my twenties and having the outward appearance of good health makes it hard for some to grasp my condition. I have had to learn that when I start to get fatigued or when I start to have pain and swelling, that it is essential for me to slow down or even stop what I am doing. For some people it gives the appearance of being lazy when in reality, I am quite literally preserving my mobility. If the damage my body is causing to it's own joints gets bad enough I will loose function of those joints. Joints like fingers, wrists, hips, knees, and ankles. Loosing function of those joints meaning I can loose my ability to write, walk and even grip things with my hands. Considering the fact that the disease began at such an early age potential loss of mobility will also strike at an earlier age if the disease is not controlled.

Part of my treatment plan to prevent further progression of the disease are immune-suppressants. One particular medication is methotrexate, this medication requires giving myself weekly injections. Methotrexate, in larger doses, is used to treat leukemia; the side effects are similar, though not as extreme in lower doses. This is included but not limited to hair loss, brittle nails, and being more susceptible to other infections. I have been on it for two years now and I still get hand fulls of hair in shower after my injection. It has also caused me to have acne worse than I ever had, even when I was in high school. It is severe enough it has begun to scar my face. Not many things are more embarrassing than terribly blemished skin at twenty-five. My skin even starts to bleed if I accidentally scratch my face.

Living with rheumatoid arthritis is a daily battle. Sometimes it's a battle just to get out of bed in the morning. And everything from the symptoms to the treatment cause a host of pain and frustration. The day to day pain can be unbearable at times. It's triggered by everything from stress to the changes in the weather and the only thing that can be done is to suppress the immune system and treat symptoms. My general prognosis is years of medications, pain killers, surgeries to remove joint deformities, joint replacements, and canes and wheel chairs. I already have joint damage in my right thumb that will require surgery to correct. For now I have put it off until I loose complete mobility in my thumb, but it is inevitable. Living with RA doesn't usually lead to a bright happy future. The harsh reality is that it is part of the long painful road that I call life.