I know this is choppy, but my mind is all over the place right now.
If you don't already know, I have a "milder" form of the same disease Bee has, as does DS. I gave it to them. would have preferred to give them large trust funds, but what can you do? After Bee was diagnosed, they backtracked to see if my "odd" medical issues might be related... they were.
The disease is degenerative, Bee was referred to hospice last year (but is doing VERY well - all things considered). In the last 5 years, we have seen too many children that we know either irl or online be taken by this damn disease. The first of them was E, and his mom and I became close (the children were seen at the same hospital). I have been noticing progression in myself, but have been trying to dismiss it as aging/stress/fatigue/being less than perfectly fit etc.
The last few weeks have reinforced that it is definitely disease process, but there is nothing I can do about it, so why stew over it?
E's mum, like me, was diagnosed after E was. She died on Thursday. She was 2 years older than me, and left behind 3 more children (who all have the same disorder in varying degrees).
I am heartsick, and scared for myself and my family.
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Sick, scared and not fond of reality right now
20 replies
BeeMom · 29/06/2013 16:17
OP posts:
PolterGoose ·
29/06/2013 17:13
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zzzzz ·
29/06/2013 23:19
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