I don’t think I’ve ever written down too many consecutive pieces of “my story” before -- at least, not my medical story. To know my RA, you have to know me. I typically divulge in sharing this story over years and years of time, and now I’m going to try to fit it all onto a few short pages? Hmm... we’ll see.
I suppose my story started before I was born; that’s what the doctors speculate. However, I began to be a burden around age two. One day, my mother noticed that my ankle was severely swollen. Because I was only two, and not walking around or really playing on my own yet, she was worried -- I hadn’t had any falls or accidents recently. She called my pediatrician and made an appointment to take me in to see him. He was perplexed, especially due to my young age and good record of no accidents or falls. He sent me down to be x-rayed, where I was diagnosed with a broken ankle, but not before the doctor not-so-outrightly accused my mother of child abuse. The doctor put a cast on it and told my mom to bring me back in six weeks. What likely seemed like a lifetime later (hey, I was born in 1990, the era before waterproof casts), my mom took me back to the doctor, and he pronounced me healed! No matter that my ankle was still swollen. He told my mom to give me Motrin if I was in pain, and I’d be fine.
A few days later, my left knee swelled up. My mom noticed it in the tub. She says it was the size of a softball (and I was not a huge two year old, so you can imagine how that looked). She knew there was something more going on, and that I didn’t just keep breaking joints. She took me back to the pediatrician -- lying to get me in (he wouldn’t see me for another swollen joint), and pulled up my pants so he could see my knee. He suppressed a gasp, and told my mother that I needed to see a better doctor. At least he had the decency to admit it. He told my mom to get me out of the suburbs, and into the city to see a good doctor that works out of a hospital.
I ended up at Children’s Memorial, in Lincoln Park. At first, I saw an entire team of rheumatologists. Going to Children’s was an all day affair, as the doctors were always behind. You could have a 10 am appointment and still be waiting at 2pm. That’s what specialists are like. Rheumatology and Immunology were right next to the chemo wards, which I know drove my mother crazy internally. I’ve always felt guilty that I, her firstborn, had to put her through so much shit. But she and my dad were always there every step of the way. Of course, after my first visit, they almost but not quite confirmed that I had JRA, juvenile rheumatoid arthritis. My sed rate, which measures the level of inflammation in one’s body, tested in the 90s. A normal human sed rate is in the teens or 20s. One thing stumped the doctors: I was never in any pain. I never complained, and when the doctors asked me what hurt, I’d always respond “nothing,” or reference a cut/scrape I had gotten the previous day. After countless x-rays (on which arthritis will not appear), an MRI, so so so so many blood tests, and so on, my doctors concluded that I did in fact have JRA. One of my first courses of treatment, since I was three and could not even swallow pills, was to have weekly IVs. A nurse came to my house and would prep me and sit with me for the two hours while the medicine coursed through my veins. By the age of four, all of the veins in my arms, hands, and feet had collapsed. This was after one year of treatment. Clearly, something was not working.
My rheumatologist at that point admitted that I may be a good candidate for a more invasive treatment. (My memory kicks in around the time of the IVs, but comes and goes. For instance, I remember that I got a new Disney movie every week to watch during the IV, but I couldn’t tell you which room I sat in to watch it. There are certainly holes in what I can recall.) He recommended I go see a renowned orthapedic surgeon with an office in northwest Indiana, who worked out of Children’s and was on the faculty at Northwestern. I easily got an appointment with the doctor’s referral (ha ha), and my four year old self was sitting in yet another doctor’s office, different location, but same ordeal. After some more x-rays, tests, and just feeling my joints in general, the surgeon decided that I needed an arthroscopic synovectomy on my left knee. For those that don’t speak doctor, that basically means that the tissue in my joint, instead of being flat and smooth, had balled up and was causing severe swelling in my joint. He wanted to operate as soon as possible.
I can never imagine that my parents expected this while they were planning on having children. I can’t imagine what they were thinking when they found all this out, but I never remember them crying or showing many signs of distress. I’m sure they did, but they also did a hell of a job for staying strong for their four year old little girl. They scheduled the surgery, and weeks before starting kindergarten, I had my first knee surgery.
The entire surgery team at Children’s was great. They let my mom stay with me until after I had “fallen asleep” for the surgery. They also let me keep my teddy bear with me (I’m guessing they took him off the table during the surgery, but my four year old self didn’t think so), and were right there waiting for me when I woke up. During the surgery, the doctor realized that all of that balled up tissue in my knee had actually forced my patella (kneecap) out of it’s proper place, and onto the side of my knee joint. That’s right, for all intents and purposes, it wasn’t really attached or being an active part of my leg. I’m not sure how I was able to walk or run around and play, but honestly no one had any idea -- I never complained that it hurt.
After my surgery, my doctor told my parents that if I had to have another knee surgery before age 10, I wouldn’t be able to walk. Again. Ever.
As a matter of fact, I proved him wrong on this point. I had a knee surgery every two years from age 4 to about 15 (six surgeries total, if I recall this correctly -- they sort of start to blur together after 3-4), and I can STILL walk around. There’s been hardly any indication that I won’t be able to walk “ever again” to this day.
I got ahead of myself there. After my surgery, my parents brought me home. I was on crutches (ever try teaching a 4-5 year old to use crutches?) for the first three days. After that, I started physical therapy right away. That was brutal. My therapists were honestly great, for the most part, and tried to make the process “fun” by making up silly games for me to exercise my knees and ankles. I paid close attention to everything that was going on around me. I exercised at home, with my mom (and sometimes little brother, when he was old enough). I went to therapy three times a week. Therapy was a 40-45 minute drive one way from my house, and I was there for an hour minimum. My mom made after school appointments, which meant that some nights we couldn’t eat until 7pm or later. She would bring snacks for my brother and I, though.
The next ten or so years were riddled with cycles of surgery/therapy/recovery/surgery, and many disappointments. The few times I was in “remission” only led to a more major disappointment a few weeks or months later when I could barely walk. I was teased at school by some of my classmates, but that died out before 4th or 5th grade. I excelled in school and genuinely enjoyed learning. I did have to sit out of gym class, though, and I usually read books during recess. I had a couple close friends, but otherwise kept to myself. My teachers enjoyed having me in class, because I was bright and helpful, but I don’t think they fully understood what was going on inside my body. The one year I tried to do PE, in 7th grade, I received my first “B” on my report card. Until that point, I had straight As for my entire elementary school experience. When I asked my teacher why I received a B, he said, “Well, you tried your best, but you couldn’t run, so I had to take off points and that lowered you to a B.”
I had never felt so disheartened. I was so excited to actually be able to interact with my peers in a non-academic way, and I felt ashamed once again for not being able to “do it right.” The following semester, I once again asked my doctor for a note to get me out of PE. I didn’t want to risk another B on my report card. I sort of expected comments from my peers about how I was able to walk or run (or how I wasn’t able to), but I thought my teachers would be understanding. Unfortunately, that was just the introduction to how people really handle people that differ from them.
I thought high school would allow me the chance to “start over,” so to speak. I was told that everyone in high school was more mature, and more understanding. I’m not sure who told me that, but I sincerely hope I get the chance to punch them in the face some day. I went off to high school with a really open mind, ready to share intricate details about my life, and I was met with... what’s the opposite of understanding?
I do have to say, many of my teachers in high school were more understanding. They were just more wordly in general and had experienced more of life than my elementary teachers had. The students, my peers, however, were about the same. One guy I dated in high school literally asked me if he could catch JRA by kissing me or holding my hand. (No.) What about oral sex or regular sex? (No. What do you think this is, an STD? This is an autoimmune disease.) The more I studied science, the more I was able to learn about myself and explain my situation.
The repertoire went (and still goes) something like this:
I have JRA (now just regular old RA). Arthritis is an autoimmune disease. That means that my body’s white blood cells attack my joints, instead of waiting for a virus or other sickness to come along. White blood cells normally only attack things that are NOT supposed to be in your body. Mine can’t tell the difference, unfortunately. It’s due to a DNA abnormality. No, it’s not my fault, and it’s not my parents’ fault, either. No, it’s also not genetic, so no, NO ONE ELSE has it in my family. My brain/DNA tells my body to do the wrong thing. I can’t control it, no. Realistically, no one can, or there’d be a cure. Yes, it hurts, but not all the time. And no, I can’t tell you when it will hurt and when it won’t hurt. I have good days and bad days. Why do I limp? Because unfortunately it started attacking my legs. Currently, I can identify arthritis in my right ankle, both knees, my hips, my elbows, a finger, and a toe. Some joints are worse than others, and they rarely all hurt at once. Yes, I can walk. No, I can’t (really) run. (Can you run at all? What if you were being chased by a bear?) Yes, of course if I were being chased by a bear, I would try my damnedest to outrun it. Would I succeed? I guess that would depend on the power of my adrenaline kicking in. (Will it ever go away?) I don’t know if it will ever go away. Personally, I doubt it. I think it might go into remission again, but that’s really like a sense of false hope that I don’t want to submit to, per se. I’ve needed a knee replacement since age 11, so even if “it” goes away, there will still be a lot of damage done to my body.
As far as medicine goes, I’ve been on anything and everything. I mentioned those IVs before. Those were chalked full of steroids. I’ve been on methotrexate and a butt load of NSAIDS and other medications. I’ve been taking ibuprofen on a daily basis since age 3. The only times I’ve ever missed were when I was prepping for a surgery and you can’t have your blood too thin for that. Recently, I was on a drug called Enbrel. My parents decided to put me on that when I was 14 or 15 years old. Within the last year, after having been on it for five to six years, my rheumatologist informed me that longitudinal studies have shown that will probably put me at a greater risk for cancer at some point in my life. That’s right, after five years of Enbrel killing my immune system, and literally CHANGING my DNA in hopes that it would make functional white blood cells, I find out that what I had been doing may cause me a ton of problems. After that, he gave me a medicine called sulfasalazine. I took it for about a year. Recently, I stopped taking it, and I haven’t seen a huge increase in my pain, or a huge decrease in my mobility.
Some people ask me if I’m upset that I have arthritis. I tell them that it’s easier to lie and tell people I don’t have it, that I was hit by a bus or shot as a child, and that’s why I don’t look or walk normally. I definitely have lied about it, especially to people I don’t know, and I’m usually not content with that decision. It’s taking the easy way out. If you’re still reading by this point, though, you’re aware that this is nothing easy to explain to folks. Am I upset that I have arthritis? No. Having arthritis has had a lot of positive benefits for me. Primarily, it’s made me more open-minded, and less judging of others. I hate hate HATE the “judging looks” I get from other people, and I make it a point to never give them when I’m out and about. It’s also made me “smarter,” or at least more aware of what’s going on. I knew what a PPO and a deductible was before I knew what a pokemon was. I could just as easily tell you about Sonic the Hedgehog as I could about synovial tissue. There’s something to be said for that. It opened me up to a world of learning. I suppose the part I’m upset with is the “future” part. The part that says, if and when I have kids, I might not be able to chase them around the house or yard. The part that says, because I’ve been on so many different medicines, I might not even be able to have kids. The part that says, by age 30, I might not be able to walk. The part that absolutely necessitates I have insurance at all times -- and GOOD insurance, too. I am upset with the part that makes me unattractive, the part that dictates that I’ll never have a sexy stride with which I can enter a room and capture people’s attention. I’m upset at the limited number of sex positions I can handle, because of my “inflexibility.” I’m upset with the fact that I can never just stay at a friend’s house randomly, because I know the next morning I will need my medicine, and it won’t be with me.
I could go on. But you know what? None of those things are huge issues. One great thing about growing up with JRA is that it has taught me to compromise. I can’t run, but I CAN walk. I won’t be able to chase my kids around, but I WILL marry someone who can. I might not be able to walk, but I WILL talk and contribute to the world. I might not be able to be on top, but being on the bottom IS just as good. I don’t live a perfect life, and I don’t know anyone who does.
The question I’ve been asked the most, historically, has been “Will it ever go away?”
Being that I am not a higher power, not omniscient, nor do I believe in anything that is, I can only do my best to answer, “I don’t know, but probably not.” My dad used to say “There’s a 50/50 chance it will go away - either it will or it won’t!” I like that perspective of looking for it. Any more conclusive statistics will just get my hopes up (or down), and I don’t want to do that. I’ve taken a long time to come to accept what I’ve been dealt with in life, and giving me more or less is not the answer. Finding my own way is.