The last few months have been pretty bad. Certainly not the worst we've had, but a challenge for sure.
Getting R diagnosed is definitely the hardest part. She has pain everyday-her neck, hips, ankles and knees. She experiences numbness in her fingers and toes. She is so stiff in the morning, but as time goes by, she is moving around like nothing is wrong. Every night at the same time she gets a flat painless, itchless, pink rash on her back and legs. We cannot deny it, something is wrong.
However the Rheumatologist disagrees. She thinks R looks perfect. This is extremely frustrating for me because I see the limp, the warm, red, swollen joints, the rash, and I have to see her in pain. I decided to take matters into my own hands and take some advice from other JA moms. I joined a Facebook group for children with arthritis. These amazing ladies have taught me so much about JA, and the more I learn, the more convinced I am that R has it. They told me that children with arthritis have both good and bad days. When I say good, I mean no pain. That is R! Most days she is in agony, but the odd day comes where she feels 100% back to "normal." Unfortunately (and ironically) she was having a quote on quote good day the day of her rheumatology appointment. One lady told me everything appears normal on a good day, and sometimes even bloodwork cannot get a child diagnosed. This makes me feel hopeless. I just want the pain to stop! Orthopedics appointment the the first week in January. I am not sure if we can make it that long. I am journaling all of R's symptoms and taking pictures of swollen joints in hopes it helps the doctors find out what's up.
In the meantime, I am beginning to really worry. R is beginning to experience issues with her vision, particularly in her right eye. She says it is foggy and blurry, and even with her glasses on (she's near sighted) she still cannot see much. She cannot read up close and She is also experiencing light sensitivity and headaches which makes me nervous because I know all about uveitis, and the thought of it makes me sick. I am going to make her an appointment with her optometrist ASAP because it is almost time for her yearly checkup anyway, so it is best to get that checked out.
In the midst of all this, R is in physiotherapy. She has gone a couple times and hasn't complained, so
that's a good thing. Her rheumatologist also recommended swimming, which I think is a great idea! She was on the swim team for years, but let it go after a coaching change. I would love for her to get back into it. She also wants to try skating, re-take piano and gymnastics. I told her no for gymnastics until we figure out what is wrong. We wouldn't want to do more damage! She also has stretches her rheumatologist gave her, so she is busy!
After all this, she is still in pain. Nobody knows why, but we just continue on like always. I am hoping they make a diagnosis in January. But then again, we may be going back sooner if the pain persists. I am just grateful for an amazing children's hospital, and I am hoping to find answers soon!