Tuesday, August 9, 2016


I found this article under "rare diseases" which is probably problem number one…however the article itself is very informative on how the United States really re-named Myalgic Encephalomyelitis to Chronic Fatigue and put all the emphasis on the "fatigue" where all of us living with this disease already know the Fatigue is like the tiniest piece of the puzzle….

Rare Diseases Article…really Rare???

I know for myself yes the fatigue aka mind numbing exhaustion is always a re-bound effect…however the reactive airway disease, constant sore throat, difficult digestion issues, insane food allergies, chronic pancreas pain that waxes and wains, headache with the slightest temperature increase, the sensitivity to smells, irritation with noises….the list goes on and on.

Every day I just can't believe I can not find a solution to get out of this situation.  Most of all it steals living…you have moved into surviving and fake living with the utmost dedication.  Everything is managed and highly controlled and the person you once were is a distant memory to yourself.

When you have an illness there is this desire for our society to remind you then you must "carpe diem" - but a unrelenting chronic illness the only way to seize a day is to find a moment and to work really hard to save up for that moment.

What I miss most lately is eating.  I just got the invitation for my friend's daughter's Bat Mitzvah and I thought mother fucker I am going to miss out on all that good food.  I'm not Jewish but have managed to amass a large number of Jewish friends - and I think in part for my ability to devour brisket and kugel and my happy indulgence of the Jewish mother feeding me.

Unless you have food allergies you can't imagine when food now has become a war zone of land mines.  The basic necessity of life has betrayed me…how to you begin to fix that?


  1. Oh yes, I know what you mean...all those yummy foods we have to miss out one. I'm guessing you are gluten sensitive? This is the biggest one for me.

    1. hmm…okay wil try and reply again since thought i did! Well you would think…but nope like Alice in the Looking Glass everything upside down - gluten and dairy I can handle…potatoes , potato starch, peas carrots…most root vegetables most fruits…basically most things good for you !!! so good to hear from you Gail - sending you lots of love ! xo h


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