Re: ... Tons of help since ... tiny good vent on invisible disability

May 9, 2004

In a message dated 5/8/2004 11:37:37 PM Eastern Daylight Time,

moondancer@... writes:

> Since 1998- dang- you would have thought long before now they'd have done

> something.

Well, actually I had been on disability on and off every year for the last

decade or more. It was always the same. I had malignant hypertension but nobody

could find a reason. Helloooooo. It was my " stretchy " DNA! I suppose I did not

look like an EDSer because of the hydration of my two stretchy colons or

persistent cloaca. [The cloaca part is IMHO! I am fed up with having the

symptoms

but doctors claim they cannot find a reason. To me my symptoms fits. Once they

consider I have a condition that should have been noticed immediately after

birth -- unless you have a " twinned " GI sysmtem :-<.

Anyway, thanks for the good thoughts. Well, it is just me now and I am back

to having to stand on my own two feet and explain me. All my coaching to get

Bill to be my spokesman is gone. But, I will continue. From now on I intend to

try to keep what I want to get across written down. I do not speak well when my

BP is over 250/150. And I get worse when I stand and get a severe drop in BP.

And that is now, as of 2/2004 known to be mainly because of the colon

duplication.

Then this April 2004, my own current EDS knowledgeable doctor forgot about my

BP problem and stood in front of me saying I was not making any sense when I

was talking to him about Bill's autopsy. I was so stressed I could not explain

myself ... you can imagine what my BP was. I tried going to the hospital with

a wheelchair attendant but I still had my transient aphasia.

Then there is the EDS skin thing we have all talked about in the EDS groups.

We mostly look good for our age. I do not wish to look sick but I sometimes

look so healthy that this is part of my so called " invisible disability. " Then,

being a little moody over cooking for one and eating healthy hospital type

meals. So, I lost weight. I am down to 179 pounds. That is great. My clothes

look

like sacks on me. Yet, at 5'4 " the weight lost is great. Another controlled

thirty pounds who know, my BP will be better and I feel have skin dragging on

the ground. I hope that is a joke Lol.

In my case this could eventually be a good thing. Supposedly weight loss

could mean a lower baseline BP. Or not. My skin is more EDS like and softer --

Grrrrr. Caro

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