Hi,
I just wanted to send you my best wishes. I have not lost any one close to me yet and I'm very grateful for that. When my mother was very ill and we thought we were going to lose her, I just felt so helpless. I couldn't help her and I couldn't console my father. I am grateful every day that she pulled through.
On a more practical note. When I was very sick and was told that I might not survive, I was appreciative of any little thing that was done to make me physically more comfortable. Anything from brushing my hair to wiping my face with a lovely cool scented cloth. My back was sore from staying in bed and it was wonderful when family or friends lightly massaged my back for me. I loved the foot massage that I got. Most of all, I appreciated not only the presence and love of my family and friends, but their intuition in knowing when I needed time by myself, to rest or just think things through. I would not have liked to have to tell them to leave me alone for a while.
My thoughts are with you.
Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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