Re: ... Tons of help since Bill's death April 3rd

May 11, 2004

In a message dated 5/5/2004 10:56:00 PM Eastern Daylight Time,

MTLamar@... writes:

> . Taking care of one disabled person -- oneself -- is a full-time job. And

> you were doing it for two!

>

Thank you for that comment. I do still worry I did not do enough. Cancer

makes you feel SOOO helpless. Last year I had started researching EDS when my

online hypertension doctor told me that if my arm was like a <

> ... that I might have EDS. He is the one who told me to look

it up. From that point on it was all the other common signs of EDS that

floored me. All of this by now has convinced my doctors. Before that I thought

all

my problems was JUST ME!! Thank God for that one online professor and me being

good at describing what my doughy squishy too soft arm felt like, lol.

Later that research on EDS for me led to me seeing how Bill and my MIL fit

right into another one of the EDS types. That was a big shocker. When you add

lung cancer to that ... It was the pits.

Well, I stood by my man to the bitter end. I went as far as not buying my own

pain medicine and finally food to afford his many pain medicines. And now,

when it's all over, I am getting help. It is a shame that it took a death for

them to notice my invisible disabilities. " You husband is dying they said ...

why don't you come visit him. " Tell his mother he is dying ... what? She has

level ten pain -- always, four bionic joint replacements, cataracts, diabetes

and

is on dialysis? Gee, the whole family is sickly. Well, as you may have read,

I finally had a visit from a RN. Social Services takes forever, but when they

are ready to visit, they come right over. I think it is deliberate. She WANTED

to see me in all my messiness. I told her the dishes were undone. My laundry

undone since the last time Bill was able to do it. Well, she said that is what

she wanted to see.

My small apartment was a wreck. With my EDS, low & high BP and ADD -- HA! I

had at least a zillion jobs half done. So embarrassing. But now I am assigned a

home aide who among other things will help me with my ADD organization. Hey,

I did not know they could do that!!!! This RN said her own two brothers had

ADDH. WoW. So I guess she really believed me.

Well, thank you ALL for your kind comments. I got to unglue my fingers from

this keyboard. Caro.

Caro

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