When I was 18 months old I was diagnosed with Juvenile Rheumatoid Arthritis. Honestly, I don’t remember feeling that different. I grew up in a great small town, so I went to school with nearly the same kids my entire school years. My parents had the brilliant idea when I was little to use my Show-and-Tell turns to educate my classmates about Arthritis. All the kids I grew up with, also grew up knowing about my health and by learning about it at such a young age, it became normal to them and wasn’t an issue.
My parents also had the forethought to raise me not to play competitive games, but to just play for the fun of it. Which was a really good thing, cause looking back, I am able to see how I couldn’t keep up with the other kids my age, but because I wasn’t so competitive , I had lots of fun just participating. I played soccer and tee-ball, I swam, I played frisbee, I went camping, I did everything a normal kid does. I did it all with my own modifications and in my own time.
Back when I was diagnosed, the idea of children having these sort of diseases still seemed to be a baffling concept to the medical community. The doctors told my parents to “hand her the remote control and bell, put her on the couch and don’t let her move much.” Well, my parents, being of the Hippie Generation, decided that the doctors were silly and with understanding and modifications I could do what the other kids did too! Thank you forever Mom and Dad!!!
My doctors of course had a minor freak-out about my parents refusal to follow their “well documented” regiment. I still remember the doctor visit after a had learned to ride a bike. I remember the rheumy arguing with my Mother that when I was crippled, because they let me ride a bike, my parents better not blame my doctors.
My parents taught me something. They researched my health conditions rather than just bowing to the doctors orders and believing doctors are more than human and must know more. After doing the research my parents came to the conclusion that giving my joints strong muscle to cushion and lend support was more likely to allow for a healthy life than having me sit on a couch and letting my joints stiffen and calcify from lack of use and my muscles weaken to the point where they lend no support or cushioning to my joints.
It didn’t take too many years for the doctors to start noticing the major differences in my lab results and my physical work ups to those of their other patients. From what I understand, there were a few other kids with parents like mine around the U.S. at the time, and the doctors in the medical community at the time realized that they seemed to have it wrong. Well yeah, obviously, when the kids who are ignoring their orders are the ones who are the healthiest. To his credit, the doc I saw at the time, who is a brilliant man who grandfathered the study of JRA, recognized the difference between those children who remained active and those who did not and began to study these affects. Thus came some new research and studies showing that moderate exercise was indeed good for the over-all health of a juvenile chronic illness patient–actually any chronic illness patient.
Right around sixth grade, I started to have weird symptoms that I had never had before. I couldn’t get my breath. In my side, I felt what I can only describe as “the sound a plastic bag makes when you rub it together.” I was also having horrible heart pain. It would start in my arm and travel into my heart with sharp pains and pressure. I thought I was dying. I thought I was having heart attacks. My rheumy, a different doc at this point, said he had no idea what was going on and it wasn’t anything in his field, it was probably nothing at all. Apparently it was all in my head. I eventually had so many weird symptoms that I could barely make it through a day. My mother ended up having to home school me my eighth grade year.
But ninth grade is the start of high school. I wanted to try to be normal, have a normal high school career. I managed to make it through Freshman year. Sophomore year got hard. But by Junior year my weird symptoms got so bad I had to home school again.
Senior year it got worse. My school was giving me credits for for work at home in lieu of attending school so that I would still graduate, but eventually the school refused to accept that what I was doing at home was equal to what was being taught at school and so they refused to accept my home schooling for school credit.
At this point I couldn’t lie down to sleep, I would feel like I was drowning, and I couldn’t breathe. The amount of pain I was in was exponential. For every hour I was awake, I would have to nap for four.
My family doctor decided he’d had enough. He ran a series of tests for what he suspected was wrong. He sent the test results to my Rheumatologist, saying that this was his field so diagnose it! I was called in the next day to my Rheumy. I had Systemic Lupus Erythematosus and I was “dying.” The pain in my heart was paracarditis (fluid and swelling in the lining of my heart) the lung problems were pleurisy (fluid and swelling in the lining of my lungs) and I had chronic pneumonia that was not caused by a virus or a bacteria. My lungs and heart were being compromised (I would have a fever of 104 for a week at a time). They told my parents there was nothing we could do if I was going to pull through only I could make it happen.
Well, obviously I did. But it was hell. I don’t remember a lot of it, with such high fevers. I ended up dropping out of high school, with the credits they wouldn’t give me and the fact that I was “dying,” it was too much to deal with at the time. They tried to convince me to withdraw to home school, then I wouldn’t count against the drop out rates for the district. I refused to give them that, they were the ones who would not accept my credits that I worked so hard to achieve for graduation.
I was put on so much prednisone that I went from my normal weight of 100 pounds to 200 pounds in three months. I don’t know if you’ve ever gained weight like that before, but let me tell you, it’s painful. Beautiful moon-face shining on (note the sarcasm) and my tiger stripes (it’s easier to think of the stretch marks as tiger stripes!).
A year or two later, though I was still trying to figure out how things worked with Lupus. I was, in general, doing pretty well and starting to get better at avoiding my triggers. I had a bit of an advantage over most people since I grew up with arthritis so that dealing with Lupus wasn’t that different to me. They all kept telling me Lupus was different than Arthritis. But I didn’t see how.
Then I started getting more weird symptoms. I would randomly fall over. I felt so dizzy, well maybe dizzy isn’t the right word. I can only describe it as feeling suddenly like I have no idea where I was in space. Sometimes I’d be able to grab onto something, but sometimes I wouldn’t even realize that I was dizzy until I was already on the ground. Then I began to be what could only have been described at the time as absentmindedness. I couldn’t remember things, things I’d done earlier that day, things I’d done a long time ago. It was annoying, but not that alarming. Of course just to be safe we went to the doctor and once again I was told that I was pretty much imagining things and hyping up nothing. Until one afternoon, I was reading a book and I got to the main character’s name and I couldn’t read it. I tried sounding it out, but I couldn’t get it, then I figured out that it was my Dad’s name. I couldn’t remember any name to call him by other than Dad. Though embarrassed, I eventually went upstairs to his office and asked him what his name was. Obviously at that point a red flag went up for my parents. They took me back to the doctors and pushed this time for tests to be done. After lots of test and more specialists with more tests it was discovered that I had been having non-stop minor strokes for at least a year. Once again my prednisone was upped and I gained back all the weight I’d managed to lose by that point.
I finally realized, there’s a difference between Lupus and Arthritis, Lupus can kill me, Arthritis won’t.
I got better though. I deal with the “side affects” from the strokes still. I’ve had multiple other diagnoses that I “wouldn’t make it,” but more days that were filled with the normal day-to-day spoonie lifestyle (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ ). I’m not just alive I’m experiencing and my life has amazing things in it. New symptoms come all the time, but my life doesn’t stop and I never let my fun stop either. I take the health stuff as it comes. I know that I have to adjust. I figure out how I can keep living the way I want to with this new factor involved and I do it.