RA-iversary

This month, I recognized 10 years since my Rheumatoid Arthritis (RA) diagnosis. It's obviously not a cause for celebration and is more of a marking of what all my body had been through and all I've learned over the last 10 years. For those newer to my blog, I found out I had RA in August 2013 when I was living in Charlotte (I was relocated for my job). I had been diagnosed with stress fractures that spring shortly after I relocated to Charlotte and then the pain kept extending to different areas of my body and it became more intense. I was in a walking boot for a stress fracture on one leg and then 3 months later, had pain in the other leg and the podiatrist thought I had a stress fracture in the other leg. I knew something wasn't right and had been to the doctor multiple times that summer. I sort of wrote the pain off as "getting older." But my parents were kind of alarmed when I stayed at their lake home in early August and needed my dad to carry my (small) carry-on suitcase upstairs. I wasn't physically able to do that which is odd for a healthy 32 year old woman. 

A blood panel and physical examination showed that I had RA. I happened to be in NYC visiting a friend when my primary care doctor called to tell me that my blood work showed that I likely had rheumatoid arthritis. I can still envision myself walking around Washington Square Park, crying, and trying to make sense of it all. It was probably best that I was visiting a friend that weekend because she was so kind and supportive. Otherwise I would have been alone in my apartment in Charlotte which was so not my happy place (long time readers will recall that my time in Charlotte was a very challenging time in my life). 

The last 10 years have been quite the journey. There have been times when my disease was well managed. In fact, when I moved to Minneapolis and established care with a new Rheumatologist, he commented that he wasn't sure that I actually had RA! Eventually I got a flare so it was evident I had it but I wanted to say - have you not looked at my medical records that were sent from Charlotte? I eventually changed doctors and found an amazing female rheumatologist. This spring I told her about my doubtful previous doctor and his doubt about my diagnosis and she was FLOORED by that encounter. 

There have been times when my disease was not well-managed. Like during my pregnancies. I got so many steroid injections during my pregnancy with Paul that the PA drew a picture of my hands and would mark off where we had done an injection so I could keep track of when I might be able to get another injection (you need to wait at least 6 weeks before injecting a joint again). My pregnancy with Taco was so different as it all occurred during the pandemic when only essential staff was in clinic. So I was only able to get 2 steroid injections and had to get by with high doses of oral steroids otherwise. I had flares so many places - my hands, elbows, hips, knees, and even my jaw! 

My disease went back to not so well managed last fall but I think/hope we are getting back to a well managed point. It's required maxing out my dose to methotrexate (MTX), which is a chemotherapy drug, but I've tolerated it well overall. I switched over to an injectable form of the drug this week which means I have an injection weekly and every other week I have 2 injections - MTX and my super expensive Humira. I'm hopeful we can drop some of the other medications I'm on right now once we're sure the MTX is working so we can decrease my pill burden. I currently take 9 pills/day, split between morning and night, for my RA. It's a lot and every time I fill my days-of-the-week pillbox (with am and pm slots) I feel like such a senior citizen! No shade on senior citizens - it's just that it's not ideal to have so dang many pills to manage. 

When I was at my parents' lake home at the end of July, I had coffee with my cousin who is like a sister. She asked about my RA and shared a story about a time I shared a hotel room with her when I was home in the summer of 2013. It must have been the same trip that I stayed with my parents at their lake home. She said she vividly remembered that I could not open the door of the hotel room - the reason I couldn't open it is because I could not grasp anything since I had flares in my fingers and I didn't have the strength to pull the door open because of flares in my elbows. She said she was so terrified that something terrible was wrong with me. So I guess I am glad that my health issue was figureoutable and treatable and hasn't had long lasting effects. The amazing array of drug options have prevented permanent joint disfigurement.  

So I recognize this diagnosis anniversary with mixed emotions. On one hand, I am lucky to be as healthy and active as I am. But on the other hand, I'll always have to take my RA into consideration. That means prioritizing sleep and listening to my body when I am tired. That is something we all should do but if I don't, I will pay for it. I'm not operating on a level playing field for my peer group and I have to frequently remind myself of that when I'm overtired or getting a flare. I just hope and pray neither of my kids end up with this, or a different autoimmune disease, but time will tell.