Friday, December 31, 2010

A new year - hoping for good things!....

With the New Year almost upon us, I get to thinking about what 2010 has brought.  Spring started out with tons of pain for Amanda with her fibromyalgia.  Things seemed to improve a bit when things dried up.   Her summer and fall has been pretty good and her pain seems to be mostly under control.  But, just because she doesn't have enough challenges, she developed an ovarian cyst in November.  We spent the better part of two days in the emergency room before he pediatrician (who happened to be on call when we went in for visit #3) took charge and finally got her the tests she needed to give them a diagnosis.  She had an ultrasound a week later and it seems to have shunk.  She had another one this week so we'll see what happens! 

I am hoping that 2011 will bring good things for all and any kids who suffer from this terrible disease. 

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!


Monday, January 4, 2010

Hope springs eternal!...

Wow, 2010 already?? Where has the time gone!?

It's been a bumpy ride for Amanda. When she went to see the rheumy in May, she was diagnosed with fibromyalgia. Well, at least we now have a name for all the pain she's been in without any inflammation! Not that it makes it any easier to deal with. The rheumy said the most effective way to deal with it is through exercise since she's already on enough drugs. So Amanda has taken up a fibro swim class which she enjoys alot. And she's been walking home from school when she can - a good 20 minute walk but usually takes longer since she's walking with friends and she's too busy gabbing to walk quickly!

She wasn't seeing any improvement over the summer with her pain levels and, in fact, her pain worsened in the fall. When she went back to the rheumy, he said the only thing he can recommend is exercise. He mentioned that she could consider going on low dose anti-depressants to help with her sleep cycle. After a LONG discussion with the physiotherapist, Amanda decided that was the best option for her. She began them 5 weeks ago. She feels like she's sleeping better but she's not sure about the pain levels. When we discussed it with the pediatrician at her last Remicade infusion, he said that, for alot of kids, the six week mark is like someone flicked a switch. All of a sudden they notice an improvement. So we'll see!

Other than that, we had a wonderful Christmas break full of lots of reading, eating, watching movies, and hanging out with friends and family. My DH Tim will also be participating in the Joints in Motion marathon on January 9th in Disney World. Not sure how I agreed to let him go to Disney without me!!??

Hope everyone is well and pain free -- may 2010 bring improvement for all!