It started for us in August 2015. My oldest was "complaining" (literally whining 24 hours) that his knee hurt. After a few days of noise I realized that I had to take him in. I dragged him to the doctor assuming it was "school-itis" and maybe he would get a Lyme's test. His pediatrician didn't agree and sent me to Rheumatology with him.
I'll never forget the visit Timothy was diagnosed. He had 17 joints actively flaring, in pain, and could hardly walk. I was told reaching "medical remission" could take 2 years. Those 2 years were filled with ups and lots of downs. Our lives were turned upside down. It effected my family in every way you can imagine and lots that you can't. Throughout I held tight to the knowledge that it could (& did) take 2 years of almost monthly medication increases to reach what is referred to as "medical remission".
Unless you have lived it, imagining what it's like to have your child diagnosed with Juvenile Arthritis is impossible.
30,000 kids in the US are living with Juvenile Idiopathic Arthritis. Why don't you see it more? The kids living with it are all around you, but often JIA is an invisible illness. That's hard for the kids who battle this awful condition.
What can you do? Visit Kids Get Arthritis Too and take 10 minutes to educate yourself. Knowledge leads to compassion. Every single one of the children living with this deserve that.
After over 2 years of living with Juvenile Arthritis, my boys and I have learned. We each have our "elevator pitch" and can sum up what JA is and how it has effected us in about 2 minutes. The key points:
- It does more then hurt just joints it also make you exhausted and just feel lousy overall.
- When the joint swells, it's not the same as other swelling, the fluid that is making the joint swell burns. It's a different level of pain.
- Our minds are still the same and because we live in our own bodies we know what we can do. Please listen to us and don't try to tell us what is too much or too little.
- All your ideas are awesome. We are happy to listen but if it's not something we don't seem excited about right now, you gave us the knowledge. Let it go now.
Juvenile Arthritis might never hit your life but knowing that you can have empathy because you have knowledge means you can help someone around you who is faced with this. Everyone encounters someone with Arthritis and most of us will one day encounter someone with Juvenile Arthritis one day. It's great to know that you can help them to learn where to find support.
In addition to The Arthritis Foundation, as a Mom I am always happy to speak/listen to other families struggling or thriving through this awful condition.
My favorite part of blogging is getting to show you not just the HAPPINESS we find but the tough crap we deal with and push aside.
Want to stay on top of our day to day, sometimes inspiring, always hysterical journey, follow on instagram now!