I was officially diagnosed with juvenile rheumatoid arthritis in middle school, but my joint pain had started at a much younger age. I remember going to the pediatrician when I was in about third-grade complaining of knee pain. At that time I was told it was simply Osgood–Schlatter. I wore the little band below my knee like a lot of other kids did in my gym class, but that dang knee pain would just not go away.
For the most part, I learned to ignore it, but as middle school came, pain started flaring up in my elbows and wrists. By 8th grade, the pain had spread to all of my joints, including my fingers and toes. This lead me to my first ever rheumatology appointment, which confirmed that my pain was in fact very real and was pretty dang severe.
Bloodwork showed that my inflammatory markers were elevated and upon exam, my joints were very hot to touch and swollen. We started off with anti-inflammatory medicines, including Motrin and Celebrex, but all that did was make my GI symptoms lose their ever-loving mind. After a stern talking to by my GI doc to my rheum doc, I was told to never take NSAID’s ever again and to this day I still can’t take NSAID’s…in non-medical talk, I can’t take Motrin/ibuprofen, Aleve, etc..
With the NSAID’s off the table and with the damage becoming more rampant we moved on to the next weapon in our arsenal, Methotrexate. Methotrexate is a nasty little sucker, but that’s what makes it so powerful and so needed for conditions like arthritis and even myasthenia! (side note: my mom has recently just started her course of treatment with methotrexate).
Although beneficial for autoimmune diseases such as arthritis and myasthenia, methotrexate is more widely known as a chemotherapy drug. I can confirm, that the rumors are true! Chemo meds are a nasty necessity! While killing the bad stuff, it also kills the good stuff. It was a risk that my doctor and my family discussed and felt was necessary for my treatment at the time. I was on methotrexate right under 2 years, before transferring my care to Mayo Clinic in 2013 aka in between freshman and sophomore year of H.S.
With Mayo came a lot of new diagnoses, a lot of new doctors and a lot of new/repeated tests. The rheumatology clinic at Mayo believed that by my junior year of H.S. I was in remission from my juvenile rheumatoid arthritis. The good news was that I was in remission, the bad news was that the tests were showing major joint damage.
It was evident that my body had been on fire and now we had to deal with the aftermath. The smoke lingered and hid a lot of the damage for a year or two, but eventually, the smoke cleared and the damage from the once wildfire inside of me was terrifying.
The pain was brutal, but at the same time, while we were dealing with the aftermath of what was once joints and cartilage, we found ourselves trying to put out another wildfire, this time in my GI system. Little did we know that it was only beginning to grow, but my doctors decided that arthritis medicines would just throw fuel onto the fire in my GI tract.
I can vividly remember sitting in that appointment as my rheumatologist told me point blank, “The fire is out, the damage has been done and now we have to try and clean up the mess.” He also informed that my joints were so damaged and so fragile, that although nothing was attacking them anymore, the damage would continue. He continued on to say that the only thing we could do was to wait for them to break down to where we could go in and surgically repair what was broken down enough.
There are few appointments where I remember leaving as disappointed as I was leaving this one. In the last 4 years since that appointment, I have had 2 hip surgeries and jaw surgery to try and repair some of the major damage. I currently await the clearance from my cardiologist in order to proceed with a 20 hour back surgery, both hip repairs, a total jaw replacement, and knee surgery.
Also, within the past 4 years, the wildfire within my GI tract has spread to every nook and cranny of my GI system. So, far I have had 1 GI surgery to try and control some of the fire within me, but the fire persists.
The past 4 years I have mediated between GI’s and rheumatologist as they argue over who’s treatment is more important… somehow I feel like a child whose parents are separated…both of my doctor’s say they want what’s best for me, but between all the bickering and pride I have been left without treatment/love from both rheumatology and gastroenterology. They say they want what’s best for me, but somehow I’m the one suffering.
Rheumatology can have this point because the fire really hasn’t been active in my joints for 4 years, so I will/ I did let them take a break from my care. Meanwhile, gastroenterology has gotten nowhere in 4 years and the fire is very much alive.
But, last fall I started to feel the fire reignite in my joints. I kept it to myself, but a test result for something else came back showing that my little friend, arthritis has come back to party again. My previous rheumatologist completely overwhelmed by my case asked me to find a new rheumatologist. With low expectations and after months of waiting, I showed up to my new rheumatologist’s office with a wagon filled load of records and waited to hear what she had to say…
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