Rigor

One day when I was 20, I woke up achy all over. I thought I'd slept funny--I had kind of an uncomfortable bed at the time--, and didn't give it much attention. The next day, the pain was still there, but again, it happens, some times muscle pain lasts a few days. This didn't quite feel like any muscle pain I'd had before, but I couldn't think of anything else it might be, and it was mild enough to not seem to warrant any additional attention.

The pain never went away, and it got worse as time went by. My joints would swell up in the morning--my fingers and toes felt like sausages. I started walking slower. I was having trouble getting to the second floor at school and having to take the elevator. I had piano class first thing in the morning, and it was torture. I still didn't go to the doctor, not sure why. I'm sure the fact that I was really depressed played some part, but I wonder if I didn't think that I was just lazy or something. Who knows. About a year later, I finally mentioned it to my doctor, who referred me to a rheumatologist, who ran a bunch of tests on me, and declared it rheumatoid arthritis.

Rheumatoid arthritis is a fun condition where, basically, for reasons unkown, your immune system decides to start attacking your joints. This was kind of baffling to me; all I really knew about arthritis was that it was a disease affecting the joints, and that it affected older people (and getting enough calcium, etc., throughout your life helped so you would be less likely to suffer from it). That's of course an entirely different type of arthritis, but I think this is what most people think of when someone mentions arthritis. It now seems a bit odd to me, but I accepted the diagnosis without any denial or anger or anything. Might have been the depression--when I'm really depressed, I have three moods: numb, sad, and suicidal--, might have been just the way I am--my general attitude towards life could be summed up as "kind of amused." My parents, however, were an entirely different story. How could their 21 year-old daughter have an old person's disease? How was it that, living in the US, people didn't know what caused it? Surely there must be some cure, this is not some third-world country. My own feelings at the time were just a mildly curious "huh, arthritis, chronic disease. Huh."

I didn't go back for treatment though. I don't remember why, probably put it off as part of my strict regimen of Not Doing Things Because of Depression. I didn't realize at the time that I was depressed--not in the clinical sense, anyway--and this was the year that it all came to a head. But that's another entry--for now, all that matters is that depression had seeped into every part of my life, paralyzing and stripping me of even the most basic of impulses. The RA got worse. I dropped out of school, and had no insurance. I didn't see a doctor for over another year.

I got married just before turning 22, and then got insurance coverage through my husband. By this time, doing anything was a very painful ordeal. Walking was this odd slow-motion activity with tiny tiny steps. Getting in the car meant walking my pathetic walk to the door; opening the door; aiming my back towards the seat; throwing myself in, stifling a scream of pain, and dragging my feet inside.

I found a great rheumatologist. She put me on antiinflammatories (steroids) right away, and it was an incredible rush. But of course you can't--or rather, you shouldn't--stay on on those for very long. You have to find some medication to actually control the disease and maybe reverse or stop the damage. We tried medication after medication. Nothing worked. And arthritis medications have nasty side effects--because it's an autoimmune disease, the medications weaken your immune system, which means you're more prone to catch all kinds of other things. At one point, I was taking an arthritis medication, something else to prevent possibly getting tuberculosis, and then something else to counteract a peripheral neuropathy (damage to the nerves on my legs, in this case) caused by the TB medications.

We finally found something that worked. It involved going to the hospital once a month and getting an IV infusion, and it was amazing. It was almost like I didn't have this insidious disease at all. And then, of course, I started having an allergic reaction to it, and had to stop. It almost seems like a dream now.

We tried a bunch more things, nothing worked. In November of last year, I caught a cold that lasted through the start of the year, and went into my nastiest bout with depression since being diagnosed at 21. My arthritis flared up to the point that often I couldn't get out of bed and had to miss work. I also developed fibromyalgia--my body's threshold for pain plummeted and my muscles went to hell from lack of use, meaning I was in constant pain not only in my joints, but also on every bit of flesh in between joints. I'd fall asleep through the day, because at night I'd wake up every two or three minutes because of the pain.

There was basically one more medication to try out, and then we'd, as silly as it sounds, just run out. This one involved injecting myself once every two weeks. It seemed to do nothing. I was feeling desperate at last. My doctor decided to add another medication that I had tried before, but that I'd had nasty side effects from, and luckily I tolerated it fine this time. It was very slow going though--it took a long time before I actually started feeling a difference. Not feeling "normal" by a long shot, mind you, but only mildly stiff and swollen on my best days, and able to move around, for the most part.

I have been on prednisone (the antiinflammatory) for about three years now, on relatively high doses. This has done all kinds of nasty things to my body. Even on good days, I'm usually not able to bend down, or do simple things like put on my own shoes and socks. On medium days, I can't stand for any length of time or take a shower. On bad days, I can't stand at all, can't get out of bed, and am confined to laying there and listening to the radio, because I can't even hold a book to read.

I often feel like I have no meaningful frame of reference. When my doctor asks me how I'm doing, I stare blankly and try to figure it out. Luckily she understands. I've lost all sense of what being a healthy person feels like.

My Saturdays start now with 12 pills of various arthritis medications and a shot (not to mention the myriad daily pills for depression, etc.).

But I'm at work.

On good days, I can chase my dog (walking fast) halfway across the living room.