Yesterday was the day. I wasn’t sure I would remember…. with Caitlin being away at Camp, and with her doing so incredibly well right now. But I did remember. Yesterday was the anniversary of her diagnosis. It’s been 11 years since she was diagnosed with systemic juvenile idiopathic (formerly rheumatoid) arthritis. She was only three. (I always meantally add “Damnit!!” to that sentence in my head.)
There’s a part of me that will always travel back on that anniversary. Part of me that will feel the fear all over again, the anger, the disbelief – the fatigue. I remember those days in the hospital and all the tests, the smell of the alcohol, the endless alarms on all of the monitors, the constant parade of doctors and nurses and specialists. And that hopeless frustration will visit me anew, and anxiety and nausea that settles on me like a wet blanket too heavy to lift off.
But as the years roll on, there is another greater meaning to this anniversary. With the benefit of hindsight, I get to see how far she has come… how much progress has been made. How much hope there is for the future. And that this disease, while being a large part of our lives, is no longer the monstrous prison it once was.
That’s easy for me to say right now… where we are. No symptoms. No inflammation. No side effects. No meds.
However, because I have so many friends in this arthritis family – I am reminded everyday of the awful ongoing truths. There is not yet an identified cause. There is not yet prevention. There is no cure. Kids I care about are struggling, in and out of the hospital, failing medications left and right while they live with daily pain. The battle rages on. And it is almost one hundred percent likely that Caitlin’s disease will return as well someday – and we have no idea when.
So – in honor of Juvenile Arthritis Awareness month – I made this short commercial. It’s really difficult to tell the story of JA and keep it short – because how can you fit all of the meds, treatments, pain, history, fears, and statistics into something short? I guess you probably can’t. So, I just tried to make something that will get people to think a minute and maybe challenge their thinking. Just because you can’t see something, doesn’t mean it isn’t there. And arthritis is not just an “old person’s disease”, nor is it always only degenerative. It can be auto-immune and it can attack your whole body. And of course, Kids Get Arthritis Too.
If you have a JA story to tell, this would be a great time to do it!
- Actemra – Tocilizumab
- Alternative Therapies
- Arthritis Camp
- Arthritis Walk
- Awareness / Advocacy
- Biologics – Enbrel
- Dealing with the public
- Dentist / Mouth Issues
- Juvenile Arthritis Conference
- Overcoming obstacles
- PT – OT
- 94,601 hits
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