Winning a Stiff Battle

28 Sep

It was the beginning of my freshman year that I started to experience pain. Things were new and things were changing. I was taking a heavier class load which involved a heavier backpack and, unfortunately, back pain. I was told to simply take OTC pain medication and to keep an eye on it. Try to carry less on my back and possibly consider investing in a backpack with wheels. Were they kidding me? High school was tough enough, let alone trying to move around with a backpack on wheels. I took the first option, only carrying the basics for each class, but the pain wouldn’t go away.
Then it happened. I got sick. I went on a trip to New Mexico for a competition and came back with Scarlett Fever. Did that even exist anymore? Well it did and I got it. I had to take a week off from not only school but also practice. It nearly devastated me because the state championship was that following weekend. I had lost a lot of weight and had a horrible rash. I was able to heal by visiting the doctor and taking time to relax and refocus, but the back pain was still there.

Then I went to exercise with my best friend. We ran on the treadmill and worked out using weights. I was having fun with minimal back pain. Okay, maybe not minimal, but I did start to ignore the constant pain. After the weights, my friend and I decided to try the rowing machine. “Good for the back,” they say, except when I got done my ankle swelled up to the size of a baseball, was a deep red, and was warm to the touch. I was in extreme pain and couldn’t walk. That weekend I went to the hospital. They told me it was inflamed and to rest my ankle. I did, but the swelling never went down. Even after elevating, resting, and taking time off from competitions, nothing seemed to ease the swelling. One thing did happen though‐ my back pain got worse. Now I really couldn’t walk.

After visiting several doctors, I saw a foot specialist. He insisted I wear a huge ugly boot. It’s one of those boots people wear after surgery or after having a cast removed. I had to wear it around school but no one understood why I had to wear it. I didn’t have surgery, and I didn’t limp awkwardly. Telling them that the doctors didn’t know what was wrong with me and that I was still having pain wasn’t a suitable answer for most.

That summer I went on vacation with my family to California. By this time it hurt to walk for long and that’s all we were going to do for our vacation‐ walk, walk, walk. So, my family decided to rent a wheelchair. Here I was, barely 16 years old and in a wheelchair. People stared at me. I could see them wondering why I was in a wheelchair. “You’re totally faking it,” or “What’s really wrong with this girl?” We were able to visit all the attractions and amusement parks. I still remember my sister saying that the best part was me in a wheelchair because we moved to the front of the line. I do have to admit that was the best part, but at the end of each day I was sore and stiff from not walking. Now this time I knew it wasn’t the backpack.

At the next doctor’s appointment I told them about my pain. They decided to give me a cortisone shot in my ankle and that eased the pain. I could finally walk on it and things were looking up until right before a competition when my ribs started to hurt. My back was in immense pain, and I knew my next shot was coming up soon. Why was my body reacting this way? Stupid cold weather. So, I did the next best thing in order to keep up with the rest of my team. I taped my ribs. I had to keep them mobile. It did the trick, until I couldn’t turn. Why was this happening to me? From that moment on, I really hated that stupid rowing machine, which at the time I believed to be the culprit.

At the next appointment, I told the doctor about my pain and taping my ribs. Not seeing anything damaged in my ankle, wearing an air cast for 6 months, and nothing broken or snapped, he decided it was time to do surgery. He would have to dig around in my ankle to figure out the problem. An X‐ray, cat scan, and every other type of scan out there was done, but he still couldn’t see anything. The next best option‐ surgery. I was terrified. It didn’t help that the doctor said that the surgery might not help and could even make my ankle worse. WORSE? Was he kidding me?

I cried every day because I couldn’t deal with the news or the pain. I remember screaming at my family because they didn’t know what was wrong with me. I just wanted to run again…forget that…I just wanted to WALK again. I wanted to feel like a normal teenager. To run, jump, bike, hike, and ski. I wanted to feel like I could move without excruciating pain. WHAT WAS WRONG WITH ME?! They couldn’t answer the question. I knew they felt bad because they did everything they could to get me the best treatment available. With all the crying and stress, I got sick again. It was a week before my surgery. I lost 20 pounds and couldn’t sleep. I was absolutely miserable. We went to see my pediatrician, and she told me my weight had been fluctuating for several years now. 20 pounds on, 20 pounds off. That year I saw the doctor every 2 months‐ 6 times in one year! She recognized this in my chart and said it would be best to have a blood test done. What was the harm? Sheesh, I was about to go into surgery. A little blood was no big deal.

A few days later, my doctor called me. She told me I had an indicator in my blood and I needed to go see a rheumatologist. A what? What was that? Not another doctor. Luckily enough my mom knew. She said it was a specialist for bones. Bones? What was wrong with my bones? We weren’t entirely sure yet, but called off the surgery until we were. Immediately she called the doctor and by doing so saved my ankle.
A week later I saw the rheumatologist. He told me I had something called Ankylosing Spondylitis, which is arthritis. What? I didn’t know kids could get arthritis. Well, they can, and they even get their own special kind, but I had AS. It affects the lower joints. This includes the lower back and with little exercise, the lungs. My hips, ankles, knees, and toes would be affected if we didn’t start treatment right away. FINALLY…TREATMENT! I was thrilled.

Except that was just the start of my journey. After talking with my rheumatologist, it took a year to find the right drug, or what I like to call, pain reducer. I started taking pills, so many each day. They made my stomach upset and I always forgot to take them. Hey, I was 16. Give me a break! I think it was my subconscious telling me not to take them. They made one pain go away, but gave me another.

Then I tried Enbrel. That was a life saver. I didn’t have any side effects, but I had to take it twice a week. The downside was I had to give myself a shot twice a week. A shot? That’s when I stopped being afraid of needles. I remember traveling with the medication on the airplane. I had to take extra precaution because of the needles, but also because it had to stay refrigerated. Nobody believed me that it was medication for arthritis, let alone a young girl being able to have it. Only old people got arthritis. “Actually, they don’t.” I told the airline agent. “Otherwise, do you really think I’d be carrying this around for the fun of it?” They backed off once they realized I was serious.

I got sick again. I caught a bad cold…or the flu. Something that I couldn’t get over. A month later I had had enough. I was missing school and I felt like I would never get caught up. My doctor suggested I stop using the Enbrel until I got well again. Two weeks later and in extreme pain, I was “healthy” enough to take my medication. But there was one problem‐ it didn’t work the same way. I had to start taking OTC medications again to get rid of the pain in my back. My ankle swelled again. I was not going to go through this again. I did this already. Why was I on an extreme drug and still taking OTC medication? This was not right.

The next option was Remicade, an IV infusion that is received only at a doctor’s office every 8 weeks. I could do that. However, there were extreme side effects and the doctor was worried since he knew of my reaction to the pills. What choice did I have? I had to walk. I wanted to hold a job in my life; I wanted to LIVE!

I’ve been on Remicade since July 2001 with very few side effects and thankfully avoided being allergic to the medication. I only get the occasional sinus infection (a treatable condition that I’m used to having anyway). My doctor informed me that if I got sick, I wouldn’t be able to stop using this medication. My immune system would be depleted. I’d be stuck with the medication and therefore stuck with the cold until it passes. If I got sick towards the end of the 8 weeks then I could take a ‘break’. I’ve had to do this very few times since the start of this treatment.

I had learned how to exercise with my AS in addition to eating healthy. I was motivated though, even as a 17‐year‐old. Why? If I gained weight, it would make the pain worse. My rheumatologist said “You must keep moving because it will prevent the joints from stiffening, especially your rib cage because once it freezes, you can’t undo the damage.” That was motivation enough. All this time I’d wanted to exercise and was now being told by my doctor to do so. I have to take vitamins and minerals daily, about 10 pills to be exact, in order to maintain my immune system, as it is weakened by my Remicade medication. I’m used to needles; I’m used to swallowing pills. That’s nothing compared to what I’ve lived with.

I’m currently 24 years old, married, and working a wonderful job. In the back of my mind I’m always thinking how what I’m doing is going to affect my arthritis. I’m currently fighting insurance companies to cover my drug. I’ve tried to claim disability but they won’t cover me because I’m working. Well, if it weren’t for the Remicade, I wouldn’t be able to. I’m also at the peak of childbearing age. I have not made the final decision, but I do know it will be tough. Trying to get pregnant, stay pregnant, and then raise a child with my arthritis will present some challenges. I know a lot of women have done it previously, but I’m still concerned. I have to pace myself, take frequent breaks, and wash my hands regularly. Most people would consider this disease a nuisance, but I find it a challenge that I work on every day, and it helps improve my life as a result. It’s not an option to avoid exercise or healthy food. I must remain diligent.

I’m a huge supporter of the Arthritis Walks, and I’m currently the co‐chair for the 2009 Denver Arthritis Walk. I’m extremely pleased to announce that the previous 2 Denver walks are merging into one large group and will be take place on Sunday, May 17 at Washington Park. Please make a donation or join my team to help fight the disease of Arthritis. If we all work together we can find a cure and stomp out the stiffness!

Edited by Maria Mickiewicz


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