Wednesday, October 13, 2010

OK, time for an update!....

As a fellow JA mom reminded me, it has been some time since I updated this. As I'm sure you all experience, life sometimes gets in the way.

So here's where things stand for Amanda. Right now she's doing alright. She had an absolutely awful spring. Her fibromyalgia really kicked her ass. She misssed more school than she attended but she still managed to have an 80% average last year! She got into a vicious cycle - she was too sore to exercise but exercise is supposed to help. The chiropractor didn't work. And the low dose antidepressants to help her sleep help somewhat but not enough. When thigs warmed up and dried out, she noticed an improvement.

She had a pretty good summer. We visited Disneyland in California. She spent most of it in a wheelchair but that was preventative as well as reactive. She had some pain and we didn't want it to get worse so using a wheelchair helped with that. Disney service is incomparable most times but out of this world when you have someone who needs a little help!

Amanda started grade 10 and seems to be off to a pretty good start. She's had a couple of weird things. First off, her chest hurts. Apparently there's a joint in the chest and pain there is often a teenage girl sympton but seems to be unrelated to her arthritis. Then her hands have been shaking. Not sure what is happening there but it seems to be increasing in frequency. She is scheduled for her next Remicade treatment in a couple of weeks so we'll discuss that with the pediatrician.

Her uveitis has been under good control as has the pressure. We're hoping we've turned a corner with this because it's been a rough battle. After the last surgery in November 2008, it took a long time to get things calm again. I know God isn't supposed to give you more than you handle but He really bit off more than I can chew sometimes! But Amanda has managed to face it all with her usual grace and strength. She amazes me sometimes. Now, I'm not saying she's perfect - on top of the pain, there's the teenage girl thing that can make things difficult. But she's usually able to keep a smile on her beautiful face.

The 6th annual Amanda's Cruise for Juvenile Arthritis was a success! We had a beautiful warm and sunny day and 50 cars joined us. I'm not sure what the total was for raised but I think it was over $2000. It's alot of work and I wish we could get a better turnout but Tim loves doing it and we have a lot of fun.

Amanda also began something new - it's called Bowen treatment. It's like they press on pressure points in the body to get the nerves to "reset". Amanda finds it very relaxing and often falls asleep during it. Now it hasn't completely taken away her pain but I think it's taken off the edge. I'm hoping it'll help her have a more normal spring. If she has another rotten spring, she may be taking a couple of courses through correspondence. She'd take two at school and two via correspondence. Not ideal but certainly an option.

So I guess you're now brought up to date! We have a rheumatologist appointment next month so I'll try to update after that. And I promise I'll try to be more regular about this. And I apologize to the couple of legitimate comments posted. I got so many spam messages that your posts got lost. To the person mentioning the Arthritis Foundation, we are in Canada and have used the Arthritis Society as a resource. Amanda has a physiotherapist who visits regularly from there. To the person mentioning the conference in July -- we would very much love to try to come to one of them. But again, we're in Canada and the travel can get expensive.

So adieu and {{{{{HUGS}}}}} to all of my fellow JA moms!



Amy Cunningham said...

So glad for the update! So glad Jo kicked your butt :b I have Fibromyalgia so I know all too well they agonizing pain and fatigue. Exercise...yeah right. I can't walk to the toilet but I should exercise. Gotcha.We are pretty sure Bean has it too. Glad that Amanda is getting some relief! Stay strong Amanda!!!

MitchB said...

Amy, are you on anything for your fibro? The pediatrician mentioned another drug - the name escapes me now - but the rheumy didn't have any kids on it so we decided not to go with it.

Gavin's Story! Living with Juvenile Arthritis... said...

I am trying to figure out how to follow your blog. My son has JA and uveitis. Our blog is
I wish you all Health and Happiness in the New Year! Happy 2001