When I look at Jacob's knee in a picture it seems easier to see the swelling. You can see the left knee has some fluid building at the top of his knee cap. The left knee cap isn't as pronounced as the right one. It is so frustrating to see that since January being on Naproxyn, then indocin, adding methotrexate, a full knee synovectomy in March, then adding Humira back in June and it still looks like this. I know it can be worse. I am very grateful that his disease hasn't spread much beyond this. He has has finger pain, ankle pain, and wrist stiffness but nothing very noticable but this knee.
Of course the biggest and most concerning inflammation, which is completely hidden from everyones view is the uveitis. I am incredibly grateful that this is quiet.
Who would of thought that in 2004, almost 5 years later we are still fighting this disease. Time presses on and we manage it day to day.
Tomorrow Jacob starts fourth grade. Jacob will meet his new teacher. Who I have informed already about his condition. I sent in ahead of time the brochure from the arthritis foundation, Your student with arthritis, The teacher's handbook on Uveitis. And my own personal letter explaining his condition. I have found that the more informed the teacher is from the beginning the better it will be if any issues come up. With Juvenile arthritis the disease is so unpredictable.
Uveitis in itself is extremely unpredictable. Things can change with both diseases within the same day. Flare ups can come and go. Then there are the medication issues. The meds cause him to feel unwell at times and can make him tired. Then there is the risk of him catching viruses because of the immunesuppressants. When school ended in June he was just starting Humira. So now being on two immune suppressants it should be interesting.
One day at a time. One doctor's appointment at a time. A lot of playing in between, and I am very grateful for that!
OUR Purple Playas Foundation is Up and Running!
6 years ago
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