Tuesday, July 31, 2007
Monday
A good friend told me recently that she would rather earn her RSD flare up than just get it with no effort. She knows that if she comes for a visit she'll suffer badly the next day but that she'd rather visit and enjoy her time out than miss it and be in pain anyway. As hard as this is to grasp that is life with RSD. Flare ups hit anytime, anywhere and knock you down for days. We share our friend philosophy and do our best to live life to its fullest even with RSD nipping at our heels.
Today Emily woke in terrible pain all over her body. She's in chronic pain everyday but it's somewhat isolated to her legs and never goes below a 7 out of 10. Today it reached 10 and stayed there. We knew it was coming. A Birthday weekend with big brother Zach with us was bound to bite us. Months of this have helped us prepare for these kind of days and we handle things very differently now. Out comes the flare up tray and out comes the inflatable bed. Grandmas fleece pajamas complete and the picture and we're good to go. I give her a day or maybe 2 depending how bad she feels then it's up and out before the pain sets in for the duration. Today however with the gentle coaxing of spending her Birthday money I loaded her up and we took a slow walk around Target. Sometimes she can walk from the car to the store then sits in a wheelchair and we zoom round and some days she manages a slow walk. Tonight she had her own cart, purse and spending money so I just followed her round until she couldn't walk anymore. I think she did beautifully!
Today Emily woke in terrible pain all over her body. She's in chronic pain everyday but it's somewhat isolated to her legs and never goes below a 7 out of 10. Today it reached 10 and stayed there. We knew it was coming. A Birthday weekend with big brother Zach with us was bound to bite us. Months of this have helped us prepare for these kind of days and we handle things very differently now. Out comes the flare up tray and out comes the inflatable bed. Grandmas fleece pajamas complete and the picture and we're good to go. I give her a day or maybe 2 depending how bad she feels then it's up and out before the pain sets in for the duration. Today however with the gentle coaxing of spending her Birthday money I loaded her up and we took a slow walk around Target. Sometimes she can walk from the car to the store then sits in a wheelchair and we zoom round and some days she manages a slow walk. Tonight she had her own cart, purse and spending money so I just followed her round until she couldn't walk anymore. I think she did beautifully!
The big day
Emily turned 12 on July 27 th. It's been such a difficult year it was important to everyone that she had a great day. I had a full day planned just in case she got up early and a quieter day planned if this wasn't the case. I wish I didn't have to think about RSD on a day like that but it's a fact of life for us now.
At lunchtime an excited Emily came through to the living room. We decorated it with a birthday banner and balloons :) She was so excited she could hardly contain herself. Tom bought her a beloved Sims 2 game, I think she has them all now. Pete got her a signed picture of Reba and the Reba season 5 DVD, she LOVES Reba! I decided to get her a guitar so that even on the worst flare up days she can create beautiful (OK, so not in the beginning) music. I also started a guitar pic collection.
Andy and Zach joined us for chuckie cheese and the Simpson's movie then it was home for a quick swim, some steak cooked on the BBQ at midnight and a sleepover in the living room.
Everything on that day was late. By the time we got Emily going and at a point where her pain level was under control it was already 3:30 pm. Everything got pushed back later and later and we ended up blowing out her Birthday candles at 2 minutes to midnight. It worked, she enjoyed her day but I was aware that things were far from typical. I hate that ...
At lunchtime an excited Emily came through to the living room. We decorated it with a birthday banner and balloons :) She was so excited she could hardly contain herself. Tom bought her a beloved Sims 2 game, I think she has them all now. Pete got her a signed picture of Reba and the Reba season 5 DVD, she LOVES Reba! I decided to get her a guitar so that even on the worst flare up days she can create beautiful (OK, so not in the beginning) music. I also started a guitar pic collection.
Andy and Zach joined us for chuckie cheese and the Simpson's movie then it was home for a quick swim, some steak cooked on the BBQ at midnight and a sleepover in the living room.
Everything on that day was late. By the time we got Emily going and at a point where her pain level was under control it was already 3:30 pm. Everything got pushed back later and later and we ended up blowing out her Birthday candles at 2 minutes to midnight. It worked, she enjoyed her day but I was aware that things were far from typical. I hate that ...
Monday, July 30, 2007
Thursday, July 26, 2007
Camp
Today Tom got offered a place at camp. This camp is for kids who's siblings have a chronic illness and Tom has a place. Tom has a place at a camp for kids who have brothers and sisters with a CHRONIC ILLNESS. I have a child with a chronic illness, wow ...
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