A bit
of an update…
I’m in
the midst of doing testing to see which particular kind of Episodic Ataxia I
have. Because of this I am now off my beloved baclofen and it has sent my
gastroparesis flaring up.
Just a
little reminder Gastroparesis is when the muscles in your bodies digestive
system work poorly or not at all. I am very lucky I have good kind of GP I just
stay away from certain meats and whole grain foods and random things here and there
and I’m fine.
However
when I am off the baclofen it does get worse and I have to resort to a liquid
and baby food diet. Every now and then my body will let me squeeze in a chicken
nugget or processed hamburger but for the most part it’s applesauce and protein
shakes for me!
The
reason why they took me off the baclofen for the testing is they want to see
how my body does at it’s “natural state.” Then they will have a few blood tests
and hopefully we’ll have things narrowed down even more.
I’m
also very excited because the doctors have agreed to let me continue to do the
hormone therapy that swings my body into menopause. They do this because with
Episodic Ataxia and many Autonomic diseases menstrual cycles can become very
dangerous because symptoms get so much worse.
The down
fall is that I’m starting to see signs of becoming a bearded lady, and I
sometimes cry because the sun is beautiful that day.
The
powers at be are intimidated by my disease still and say I shouldn’t work, but I’m
still volunteering consistently at least 6-8hrs a week. I’m a lucky girl. For
all I have been through it seems so small in comparison of what it could be if I
were going through it alone.
Xo joami
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