It's been awhile since I've told my story of how Juvenile Arthritis (JA)/Rheumatoid Arthritis (RA) stopped in for a visit and brought all of its lovely BFF's. I thought I'd take a minute and write up my story so anyone new to me or this blog will know exactly how things went down.
I was 2 years old when I was diagnosed with Juvenile Arthritis (JA) (yes, back in the dinosaur age when they treated JA with aspirin...lots and lots of aspirin). My knees and hands started to swell and I used to roam the house at night (not a great thing for a 2 year old). Eventually, my parents had to put my crib back up with a volleyball net over the top because I was climbing two gates to get out of my room (I might have hurt but I was determined).
Finally my parents could deny it no longer, there was definitely something wrong with me, and they knew exactly what it was. I wasn't the only one in my family that had swelling and pain in their joints. There is a long history on my Dad's side, I have two great aunts, a second cousin and my dad (he was diagnosed with Psoriatic Arthritis (PsA) 10 years after my diagnosis) and all of them had RA. My mom says she used to watch my aunt climb up the cement stairs outside my Nana's house (she was very stubborn). When she was confronted with the idea of my having what my Aunt had she was really horrified. Her worst fears we're realized when I was diagnosed by my Orthopedic Surgeon. I ended up in the hospital so they could do some testing and try to figure out how much aspirin my little body could handle (36 was way to many), they decided that 13 was the right number and sent me home. Miraculously, I was sick for about 6 months and then went into remission until I was 12.
When I was 12 it was my knee again (which is odd because they are my most quiet joints). This time they were excited to try a new coated aspirin, Ecotrin (I still have the ringing in my ears from this particular drug). We tried pretty much everything, I went gluten free (this was when the food was horrible, expensive and more like a science experiment, it felt much more like chemicals than food). Sadly, that didn't do much for me and as a 12 year old I didn't follow it nearly as well as I could have. We finally drained my knee did a cortisone injection and back into remission I went
I floated until I was 18 and in college. I don't think my parents were very happy at the thought of me going away so I went to college close to home. While I was there I tripped while walking on the side walk and fell on my elbow. Long story short, ER, torn rotator cuff, PT and eventually I moved home at the end of the semester. My one regret in this situation was not finishing college, my parents were very over protective and I wish the situation had been different, even if they had only insisted on community college. After I moved home I immediately found a job I really liked, made decent money and was planning my escape when I woke up with my foot the size of a football.
I went into my rheum to see what was going on and he immediately sent me to my Orthopedic Surgeon. I knew that wasn't good. I ended up in a cast for 10 weeks during the summer unable to drive. So yup, I ended having to quit my job and live at home for another 6 months. We did all kinds of injections and wraps in the cast, and good old NSAIDS (I'm pretty sure I have tried them all). I wanted surgery to just be done and my surgeon refused to do it (I"m so happy that he refused to this day, he knew what he was doing).That magic 6 months came along and poof, back into remission.
Since this is a little longer than I had planned I will do this in two posts. Stay tuned for my more recent years a lot more crazy stuff has happened that will show just how scary RA can get and how my body is holding up 42 years after being diagnosed.