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I have rheumatoid arthritis. Thanks to good treatments, most people… - Equiraptor's Journal
equiraptor
equiraptor
I have rheumatoid arthritis. Thanks to good treatments, most people don't know this unless/until I tell them. But before I started treatment, things were very different for me. I started on methotrexate in late spring/early summer of 1999. Spring of 1999 was something like this, for me. I was 16, and a junior in high school.

I'd wake up with pain and stiffness. Range of motion in my affected joints was very limited. My affected joints are: toes, balls of feet, knees, fingers, wrists, elbows, shoulders, jaw. Thankfully, my bed was fairly high. This meant I didn't need to support my weight on bent knees to get out of bed. That's huge - at this hour of the morning, my knees couldn't support any weight while bent.

I'd roll out of bed and prop myself up, and walk slowly toward the stairs. Mother always had breakfast ready and waiting. I had to go down the stairs one at a time... I'd stand on my left leg and put my right over the next step while holding onto the banister with both hands. I'd slowly lower, bending that left knee just slightly, until it buckled. My grip on the banister would keep me from losing my balance as I fell onto my right leg on the lower step. I'd then put my left foot next to the right and shift my weight to the left foot. And then the process would repeat.

Once I made it down the stairs, walking wasn't a great challenge. It hurt, but I had enough mobility in my joints to walk on a level surface. I'd get to the kitchen table and it'd be time to sit. Except at this point, I never sat down in chairs. I fell into them. Yet again, my knees would buckle if I asked them to support my weight while bent. By this time I was used to falling into chairs, though. I'd plop down and start eating. I had to cut my food into tiny bites because I could no longer open my mouth very far. Except as my fingers and wrists hurt, I couldn't cut very well / very tough things. That generally wasn't much of a problem for breakfast, though.

After breakfast, I had to get out of the chair. My knees can't support my weight while bent, though, which made getting up rather hard. I had to put my feet in just the right place, hold my knees at just the right angle, and shift my weight and push off with my arms.

Back to the stairs! Time to go upstairs so I can get dressed. If I was having a good day, I could take the stairs one at a time, with my right foot always being the one going to the next step. If it was a bad day, though, I had to sit and use both arms and legs to push myself up each step. Getting back on my feet at the top of the stairs was always an interesting process.

Then it was time to get dressed. This is where the pain in my shoulders and elbows would become a real problem. You see, I couldn't lift my hands over my head. To take off my nightgown (which typically would be pulled over my head), I had to grab it around the waist area and bend over. I'd relax my arms, still gripping the cloth, and my arms would fall. This would pull the nightgown over/under/whatever my head. I'd use similar tricks to get shirts over my head to put them on. Tying shoes tended to cause spikes in pain, too.

At school, walking to classes wasn't always easy. I had band first thing in the morning, every morning, always. This particular semester, this was followed by English. The English classes were on the opposite side of the school from the band hall. I was never late to English, but I also was almost never there before the "warning" bell (one minute before the tardy bell). I couldn't run and I couldn't walk quickly. I'd hobble from class to class, falling into chairs, bracing to get back up, until lunch. I'd pick at my food... I had no will to eat. During this time I went from weighing 125 pounds to 105.

It was at this time that I stopped being able to be a technically talented flute player. My fingers just couldn't move fast enough. But this was also when I learned to pour my heart out through my music. I had others tell me that my playing was moving... I just knew my tears. My senior year, I played Duo for Flute and Piano by Aaron Copland for UIL Solo/Ensemble. I love this piece. I'd find somewhere I could sit alone and drown myself in it.

And somehow, through this, I kept riding the horses. No amount of pain could keep me away from them. It was a real struggle for me to tack up the horses - Getting all the weight of a saddle up to the back of a horse? My shoulders and elbows protested mightily. There was one specific saddle that fit me well, and also happened to be just barely light enough for me to lift. I would use that saddle. Getting the bridles on the horses generally wasn't difficult, but if one of the horses was being a pain about it, I might have trouble.

During this time I also got a "trigger finger." There was a knot on a tendon in my left hand - the one that controlled my middle finger. I couldn't bend my middle finger without searing pain, and if I did manage to bend it, it would get stuck bent. This was extremely painful. I would have to work the very tip of the finger back and forth, causing even more pain, to get my finger to straighten out again. Soon after my diagnosis, I got a cortisone shot in that part of my hand. The knot on my tendon is still there, but it's small enough to not be problematic anymore.

Though standing hurt me, I wouldn't dare sit on the floor. The trials involved in standing back up were just too much. Washing my hair was hard. The heat from the shower loosened my shoulders enough so I could get my hands to the top of my head, but it hurt, and I had very little strength with my hands up there.

I felt like I was trapped in the body of an 80 year old.

In March of 1999, I finally went to my doctor about all this pain. He said he suspected rheumatoid arthritis, but that it could be lupus. Either way, it was highly aggressive and I needed to start treatment quickly. Even if it wasn't lupus, the RA could still attack my heart and lungs (given how aggressive my case was). I dont remember if he said what that would cause or not. I was just happy to hear this pain had a name and a treatment. My doctor - my PCP - called a rheumatologist for me. Apparently he explained the severity of my condition, because this rheumatologist had a month long waiting list, but I only had to wait a few days. I started methotrexate soon thereafter, and things improved somewhat. But even when we had me on a large MTX dose (I think it was 62.5mg), I still had quite a bit of pain. In early 2001 (I think February?) I started Remicade (infliximab). The combination of low-dose MTX and Remicade finally got my RA under control.
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