I was referred to a pediatric rheumatologist who would oversee my care for the next year or so. She explained this condition to me. It was an autoimmune disease that caused (among other symptoms) pain, swelling, and stiffness in my joints. I remember being confused. I remember asking my parents if I was allowed to tell my friends at school about my diagnosis. I know I didn’t understand the idea that there were illnesses from which you would not recover… because they had no cure.

Pre-Diagnosis

My parents tell me that when I was very young, about two years of age, I would complain that my feet hurt every time we went on long walks. They took me to our family doctor who could find no medical reason for my alleged pain. He referred me to a foot specialist who didn’t find anything wrong with me either. My complaining continued and eventually my family doctor decided it must be a ploy for attention on my part. My younger brother had been born recently and this explanation seemed to satisfy everyone. To be fair I was not very happy to be a big sister. Apparently when my parents first brought him home from the hospital I said “He’s nice. You can take him back now.”

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This photo really captures my enthusiasm about becoming a big sister.

I was told to stop complaining about my foot pain because there was nothing wrong with me. I did stop complaining. I guess I figured what I was feeling was normal and I adjusted. As I got a bit older I would always walk a bit slowly, dragging my feet as I went along.  My father would always tell me to “walk with a purpose!” I grew so tired of hearing this phrase. I was walking with a purpose! I was just slow and bad at sports!

One summer day, when I was about 7 years old, we were spending time at my grandparents house. I was sitting on the front steps when my father came outside and noticed that my knee looked incredibly swollen. I didn’t know what he was talking about, I felt fine. Within the next few days I was brought to the family doctor who could find no explanation for this swelling. I don’t remember this process very clearly considering I was 7 years old, but I know that eventually I was referred to a specialist at the Mayo Clinic.

I vividly remember having my knee drained at the hospital there. It was the first time I had a medical problem really. When I was very young, again about 2, I was diagnosed with psoriasis (which my father has) and would get very bad rashes on the left half of my stomach, but that was really it and I had no recollection of that. This knee draining was the first sort of medical ‘procedure’ I’d had beyond booster shots and the blood tests I’d just had. It was strange and scary and painful. I remember sitting very still as I watched the yellow fluid being drawn from my knee. I remember being told I was very brave.

Diagnosis

My diagnosis was a process of elimination. My blood tests were inconclusive and I there was no infection that could explain my symptoms, therefore it was likely JRA (Juvenile Rheumatoid Arthritis). I was referred to a pediatric rheumatologist who would oversee my care for the next year or so. She explained this condition to me. It was an autoimmune disease that caused (among other symptoms) pain, swelling, and stiffness in my joints.

I remember being confused. I remember asking my parents if I was allowed to tell my friends at school about my diagnosis. I know I didn’t understand the idea that there were illnesses from which you would not recover… because they had no cure. Being told at 7 that you have a condition you’ll live with for the rest of your life just doesn’t make sense because you don’t have much concept of “the rest of your life.” At 7 an hour is an incredibly long time to wait for something, 16-year-olds seem like adults, and the idea of becoming a teenager yourself is hard to grasp because it’s a lifetime away.

My condition quickly worsened and I learned about arthritis as I experienced it. It seems that in addition to my left knee, I had arthritis in my left hand, both my feet and ankles, and my jaw. I would sleep with my legs curled up and each morning I would wake being unable to straighten them. That’s what morning stiffness meant. I would scoot on my butt into my parents room and they would draw me a bath. The warm water helped me loosen up. It was very painful getting my legs straightened out in the mornings so I quickly began physical therapy. I would go three days a week and had to miss school to go. I also had water therapy (which was so fun, like a swimming lesson), occupational therapy (where I got to play with clay), and regular visits with my rheumatologist whose office was over an hour from the house so it was usually a day trip. I missed a lot of school…

Treatment

I tried a whole slew of medications! I was on methotrexate which would make me sick to my stomach often causing me to miss school. I was on vioxx which is no longer on the market because oops it killed people. That caused me to develop a stomach ulcer but once I stopped the medication it was small enough that it went away on it’s own. I was on prednisone every now and again. They don’t like to use it for long periods of time unless they have to because it’s bad for your bones and can cause you to develop osteoporosis early.

I was on IV’s of… I think it was remicade or steroids or both? That was the worst because I had to go into the hospital to have the medication administered and the whole time the IV was in your arm you would get this horrible metallic taste in your mouth. I would always bring those caramel apple lollipops because those were my favorite and it helped to suck on something sweet. I have an aversion to them as a result.

 I remember every time I would get up to use the restroom I would have to wheel the thing that held my bag of fluids with me. That always made me feel like one of the sick kids you see in movies. When people were sick they wore hospital gowns and wheeled around these things and now I had one (minus the gown). Just like in madeline when she has her appendix out.

The nurses started to have a hard time getting the IV to go in because my veins were being poked so often from IV’s or the regular blood tests I had to take. I remember the day they considered getting me a port. That involves a surgery where they put a port in your chest so they have a way of easily administering IV medication without having to poke your arm every time. I really did not want this surgery. I remember the nurse saying, “I’ll try one more time and if I can’t get your vein, we will have to talk about the surgery.” Thank god the needle went in! Most stressful needle poke of my life to date.

The best day getting my IV was the day someone brought in a puppy for me to hold. I was a huge animal lover and this absolutely made my month. They had to take it away when it started chewing on my tubes but the 60 seconds I got to hold a freaking puppy were the best 60 seconds I ever spent in that hospital.

I’m sure I tried some other medications like Naprosyn and other pills for pain and swelling. I also had an aunt who was a chiropractor and practitioner of homeopathic medicine. My dad thought it was kind of hippy dippy but my mom was willing to try anything to help me. So my aunt  gave me a lot of vitamins and herbal supplements to take.

I got really good at swallowing pills. It was funny because my mom isn’t and makes a big production out of it come allergy season when she has to take antihistamines. She’ll gag and choke and complain. I took them just fine but there were so many, once my aunt got involved with my care, that my mother would open up the gels and pour the contents into my chocolate milk. I drank this horrible chocolate milk concoction every day for the longest time.

My aunt also gave us some cream that I was supposed to rub on my knee. My mom read the label and since it was really supposed to be used on cows… she didn’t it was appropriate for use on her daughter. My grandma was in town at the time and she took my aunts medical advice VERY seriously. (I think that’s mostly because she really doesn’t like going to the doctor and has discovered an out in relying on her daughter instead.) Anyway in an effort to help relieve her granddaughters pain, my grandma snuck into my room and put the cream on my knee. About 20 minutes later I developed skin irritation. Very minor skin irritation, just a little bit of itching, but I told my parents and I remember that being a big deal amongst the adults.

Finding the right medications took some time and until we got it worked out I started seeing an orthopedic doctor. He got me some orthopedic shoes and monitored my growth. Since I had undiagnosed JRA for so long, I had been favoring my left leg when I walked. Apparently your body interprets that as “oh crap we must have made it the wrong size, lets make it longer.” But that really only gives you a leg length difference that throws off your spine. Mine wasn’t that bad. The biggest difference that’s actually noticeable is that now my right calf muscle is bigger than the left one since I used it more during my development.

I didn’t mind the orthopedic doctor. He gave me lots of x-rays which I thought were fun. I liked looking at the pictures of my bones and they always give you stickers after. Then everyone decided that it would be in my best interest to wear a freaking leg brace like Forrest Gump.  I was supposed to wear the leg brace at night to help me keep my leg straight so I could walk in the mornings but it was painful and uncomfortable. I went through 3 different leg braces over the course of my childhood. The first one was an atrocious metal contraption that I hated and refused to wear to school… but the other two were made from casts. I loved those because I got to choose a color and plus getting it made was all the fun of being casted for a broken leg without the broken leg! Dragging your leg brace to slumber parties is an absolute pain, though most kids find pink casts to be pretty cool. I was one of the lucky ones. Never a broken bone, always an awesome pink cast.

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I also had little wooden crutches for my bad days. We even got, because I didn’t want a wheelchair, one of those jogging strollers for bigger kids. It was a custom made chair that had wheels so it could move… it was a wheelchair. But it was cool and purple. I really only  used it for longer walks like if we were going to the mall or something (don’t forget in Minnesota it’s the Mall of America so it actually was THAT big). At school though I would get creative. At recess I would have my friends pull me along in a waggon or a sled depending on the time of year.

image2I appear to be balding in this photo because I was also diagnosed with alopecia during this time.. Those autoimmune diseases… always inviting obnoxious neighbors to the party.

All of these medications and the whole dealing with a chronic illness thing as a kid has an effect on a person. I was already a kind of bizarre creative kid and when you threw chemicals and a genuine life struggle in there, things got a little weird. I was pretty hyperactive from the steroids so I didn’t sleep very much. I remember watching a lot of late night TV. The old black and white shows like Gilligan’s Island. I was also prone to emotional breakdowns. For example I forgot a souvenir pen at a hotel room on a family road trip and cried for literally 4 hours. One of my friends offered to do my classroom chore for me and I cried for two hours. I forgot a beanie baby at my cousins house and cried for 1 hour. I think this is what inspired many of my middle school life choices…

Then they came out with “The Miracle Drug” Enbrel. Downside? I had to learn to self inject by age 10. Upside? It made my arthritis virtually disappear. I began taking this medication and I was able to walk. I could sleep at night with no leg braces and get up in the morning. I still had occasional flare ups where my symptoms would come back full force, but my day to day life significantly improved. I was finally managing my condition on medication. I never went into remission (where you don’t have any disease activity), but I was living a pretty normal life all of a sudden. I still struggled with fatigue, and as Enbrel is an immunosuppressant I got sick a lot, but I was a world away from where I was when I first got diagnosed.

Today

Now, after ten years of taking this miracle drug, it has stopped working. I started flaring regularly and nearly had to get my knee drained a couple of times because it swelled  up so much. It’s fine, my partner really enjoys the impromptu late night hospital trips…Fortunately they have a number of newer medication options for me to try now. I have switched to Humira which seems to be working so far. A chronic illness is a never-ending adventure in many ways. It’s a good thing to know about me because it’s a big influence on who I am, and I mention it casually from time to time.

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