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Ray and Meri,
The one thing that I keep reminding myself is that there is no such thing as normal, at least in the context of our past. I do not believe that I will ever be the same in terms of energy or relative inattention to illness or symptoms.
When I remember this, the medications, the flare-ups, the irritations become part of the new normal.
Meri, the complain more piece is important. I have become accustomed to some of my GVHD symptoms to the point that the doctor chastised me and said that my willingness to accept that level of discomfort was not acceptable, and probably not healthy. I also had a period of time where I was getting regular infections and just took it to be part of the learning curve of my new immune system - it was not - and i needed to be more cautious.
Moral of the story made short - normal is a relative term for each of us, whether we are healthy, pre-transplant, or post-transplant. Once we accept normal for each of us, then each day becomes the gift that it should be.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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