Thursday, May 31, 2007
Trying to stay positive, but...
...it is very hard.
We had our 'date' to the hospital yesterday. Had hoped to get there early enough to visit the cafe before the appointment, but there was no parking, so we had to park a few blocks away and walk back. Such a slow process for John at the moment, even golden oldies on walking frames overtake us.
We got up to 3A, the renal consulting rooms, just in time for John to catch his breath before we went in. Along with the shortness of breath, acid reflux, muscle weakness, twitches, acne, sore eyes and needing sleeping pills, John has developed tingling in his fingers on the left hand. When he mentioned that to the doctor I couldn't help myself and said - great, add a heart attack to the mix, don't we have enough going on, is our life too boring?
The doctor laughed and said he could see why John brought me along, John said "Comic Relief".
Turns out the tingling is yet another side effect from the drugs.
The doctor did say we have had a particularly rough ride, that they only show the happy stuff on TV and having a transplant is like having a baby, all the anxiety and worry that goes along with that but you don't have a new baby to show off at the end.
Because there are no real answers just more appointments we didn't end up at the cafe after the appointment either, but headed home in the rain.
Now I'm left wondering if this is as good as it gets for John, he had 2 weeks of being his old self back in December, 3 months after the transplant, and then it all started back downhill.
It is hard to keep looking on the bright side, think positive and all of those quirky, happy little expressions. Family and friends all think the transplant fixed everything and can't understand that our lives are just stressful, there hasn't been a happy ending for us yet.
Today I have to hold it together and meet with this school teacher without reaching over the desk and smacking him silly. The letter he wrote us would have anyone thinking Simon is the worst kid in school. I really do not need this today or any day actually.
I will pull myself up by the boot straps and plan the menu for Bradley's 20th birthday on Monday. I have some cooking to do over the weekend, but will buy his cake this year as he wants a caramel mud cake and that is just too much to tackle.
John and I did find a new song we both love - Micheal Buble "Everything".
We had our 'date' to the hospital yesterday. Had hoped to get there early enough to visit the cafe before the appointment, but there was no parking, so we had to park a few blocks away and walk back. Such a slow process for John at the moment, even golden oldies on walking frames overtake us.
We got up to 3A, the renal consulting rooms, just in time for John to catch his breath before we went in. Along with the shortness of breath, acid reflux, muscle weakness, twitches, acne, sore eyes and needing sleeping pills, John has developed tingling in his fingers on the left hand. When he mentioned that to the doctor I couldn't help myself and said - great, add a heart attack to the mix, don't we have enough going on, is our life too boring?
The doctor laughed and said he could see why John brought me along, John said "Comic Relief".
Turns out the tingling is yet another side effect from the drugs.
The doctor did say we have had a particularly rough ride, that they only show the happy stuff on TV and having a transplant is like having a baby, all the anxiety and worry that goes along with that but you don't have a new baby to show off at the end.
Because there are no real answers just more appointments we didn't end up at the cafe after the appointment either, but headed home in the rain.
Now I'm left wondering if this is as good as it gets for John, he had 2 weeks of being his old self back in December, 3 months after the transplant, and then it all started back downhill.
It is hard to keep looking on the bright side, think positive and all of those quirky, happy little expressions. Family and friends all think the transplant fixed everything and can't understand that our lives are just stressful, there hasn't been a happy ending for us yet.
Today I have to hold it together and meet with this school teacher without reaching over the desk and smacking him silly. The letter he wrote us would have anyone thinking Simon is the worst kid in school. I really do not need this today or any day actually.
I will pull myself up by the boot straps and plan the menu for Bradley's 20th birthday on Monday. I have some cooking to do over the weekend, but will buy his cake this year as he wants a caramel mud cake and that is just too much to tackle.
John and I did find a new song we both love - Micheal Buble "Everything".
# posted by Sandy @ 6:04 AM 
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Sandy maybe you should smack that teacher one! it might make him sit up and listen....
It must be very hard for you and John and I am sure many a time you have wanted to give in. Just breath!
xx nise xx
It must be very hard for you and John and I am sure many a time you have wanted to give in. Just breath!
xx nise xx
Sandy just popping in to give you hugs and let you know that I am thinking of you and John. Hope you enjoyed your Mother, son outing with Bradley. Sounds as though Simon's teacher needed a good smack in the head.
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