June 2007 – So I’ve pretty much brought you up to date on how things are so far. So it’s time to give a little more insight into why I’ve decided to do this blog. I have a bunch of reasons.
I wanted to put our story out there for any parent who is just embarking on this journey. I well remember how overwhelming I can be to hear this diagnosis and feel completely helpless to do anything. Yes, it isn’t the worst thing that could happen to her. And yes it can be controlled with medication. And yes there is ALWAYS someone worse off than you. But anything that makes your child different or makes their journey in this world a little more difficult than most people is something that can be very hard to grasp, accept, and move on from. And I wanted that parent, who felt like they were cast out into the deep wide ocean, to feel like there was a virtual life preserver floating out there for them. I was lucky enough to find a website full of mom’s who had some “been there, done that” experience and they talked me off the ledge more than once. So I guess I wanted the opportunity to “pay it forward”.
If I educate even one person who thinks that kids can’t get arthritis, then this blog will have done it’s job! On our first trip to Disney with Amanda in a wheelchair, a very sweet couple visiting from Houston with their grandson was beside us waiting for the parade – not sure why, but we always find ourselves talking with complete strangers in Disney World! She asked Amanda why she was in the wheelchair and Amanda told her. And she said “Oh, I didn’t know kids could get arthritis!”. I don’t ever want to hear that kind of phrase again! I work at the University of Waterloo and, every March, I organize a Two for Blue day – a day across campus that folks can wear blue and pay a twoonie (a $2 coin in Canadian currency) in support of juvenile arthritis. I’ve been doing it for 5 years and we’ve raised about $4,400. But, more important than any money we could bring in, the fact that we’re dispelling the myth that arthritis is an old person’s disease is my ultimate goal.
And lastly, it’s cathartic for me. You know, Amanda has had 25 doctors appointments since January. Pediatrician, rheumatologist, joint injections, opthamologist, optometrist, physiotherapist – you name it, we’ve been there. And my friends and family all make the appropriate comments – “Oh my gosh, I don’t know how you do it!”, “That poor kid!”, etc. But I don’t think ANYONE can truly get how devastating, insidious, and all consuming this disease can be to your life, your family, your sanity until they live through it. It is completely and utterly draining dealing with this on a day to day basis, particularly when Amanda isn’t feeling well. Some days, I’d like nothing better than to toss my hands up in the air and surrender – pull my head under my blankets and block out everyone and everything. Unfortunately, for Amanda’s sake, I can’t do that. She’s shown such strength and grace in dealing with this that for me to do anything less than her would be cowardly.
So where are we now. Amand is not doing well. The last set of joint injections, combined with the weekly methotrexate and daily naprosyn, really isn’t helping relieve her pain. At our last rheumatologist appointment in April, the rheumatologist suggested we try a medication called Remicade. Couple of hurdles – the drug costs $40,000/year to be on it. Well, Tim and I aren’t independently wealthy – we are what you might call independently poor LOL – so we’ve got two avenues to pursue to get this covered. One is our insurance. The rheumatologist sent in the paperwork for insurance approval and we’re waiting to hear from them. If they reject our claim, there is an organization called the Trillium Foundation which will cover extremely expensive medications. Apparently there’s something called a Section 8 we can apply for. Not sure exactly what that is – in the army, if you’re given a section 8, you’re crazy!! – but it’s a clause for special circumstances. The medication is given by I.V. infusion once a month – which means we have to sit at a hospital for a couple of hours once a month. Fortunately, we can do it at a local hospital. The other hurdle is it can take another couple of months before all the red tape is torn through and, in the meantime, Amanda experiences daily and routine-altering pain. She’s missed quite a few days from school, simply because she is so exhausted and sore. We had a chat with the physio about this – being in constant and chronic pain is draining in and of itself, but being in a significant flare is also strength sapping. Fortunately the school year is almost over and she has plans to spend the summer relaxing and trying to regain some strength and energy. Right now, Amanda has pain in both knees, both ankles, and both sides of her jaw. Somehow she still manages to put a smile on her face.
We’ve also gotten news that something very exciting is going on for Amanda. The Arthritis Society runs a series of marathons all over the world called Joints in Motion. Monies raised go towards research. Every runner picks someone they’re running for – someone in their family or a friend who has arthritis. Well, a woman named Linda contacted the local Arthritis Society office looking for someone to run for, someone to inspire her when the training gets tough. They recommended Amanda – so Linda will be running the Athens marathon in October for Amanda! For more information on the Joints in Motion marathons, visit http://www.arthritis.ca/local%20programs/ontario/jim/default.asp?s=1
So that wraps up things for now. I’ll be updating the blog when Amanda has an appointment or if something is going on – or if I just want to say HI!