Frequent sickcall ... or always sick ... long vent :-

[Guest guest]

Hi all,

I have a history of looking great but being sick ALWAYS. My Mom first of

course and me like her. At some point, my medical record was SO big and fat they

had to split it. Yet, when you read through it, they typically would be saying

there is NOTHING physically wrong with me. Or more honestly they had no clue

what was wrong with me. I use to see the words 'atypical' or opposite response

to treatments or medicine. I was once told that every time the doctors saw me

I had a " shopping list " of problems.

Now, with my knowledge of typical EDS things, when I look back, almost

everything can be found on one of the EDS list(s). Like early dental caries and

soft

teeth that moved around in the jaw, early macular degeneration, your mouth

getting stuck open, BP problems, and GI problems. I had blurred vision that came

and went for no reason. I never reported any aches and pains because they

seemed to jump around my body. Every few years I had moments when I played

stretching the loose skin on my hands. Bruises? Well, Mom bruised so why would I

complain. I had stretch marks at ten. Or as a teen, you wear a bathing suit

wondering if anyone else had blue-green veins showing like me on their chest.

Now, as I tally Bills medical records for his SSD [1998-2004] and VA PTSD

[1970-2004] papers, his medical records are <

>. It is true how each of us has/had our own set of unique

symptoms. Bill told me and his doctor last year that the VA application found

under

his name but wrong, as it talked about a jaw problem. Well, I now know that when

he was on sea duty 1975-1982 or so, he had chronic ear infection, chronic URI

and TMS problems. This was complete with redness, swelling, mucus. They found

no reason for all of this and always said it was viral. <>.

In any case he was always sent back to work. He had chronic bronchitis. This

was before I married Bill so I did not know this until now. It appears to me

that he was having reactions out at sea.

For years. The military said it was viral infection. Four time or more a

month? How do you have chronic viral infections? Why did they not do something?

The other thing was his skin was so soft that his own fingernails tore his skin.

Well, I knew that but was surprised to see it documented so clearly in the

military records. He got insect bites that healed slowly. In 2003 & 2004 his

final doctors tried to make like the cancer, chemo or whatever caused his

problems. Not true. If I scratch hard, my trimmed nails do NOT tear my skin. If

Bill

scratched with his almost no fingernails he had terrible rips. Awake that was

controlled. Asleep, well he awoke with the scratches. He was allergic to

water, that is the chlorine in it. So who knows what sea duty did to him.

Has anyone out there had to prove EDS for a deceased person. If Bill was on

sick call this much ... Grrrrr. I mean, I even see records of him having BP

spikes and severe abdominal pain. He was hospitalized and later discharged

saying

they couldn't find anything. I wonder, if like me, he gave up trying to

explain his abdominal pain that never showed on the medical equipment. Even five

years ago in NYC I see records of complaints that he could not be in that much

pain.

Excuse the vent. I am happy to finish up his paper work. But we have so many

parallels it is amazing. IDEA: For those who are yet to be diagnosed with EDS

or trying to, write a list of ALL of your doctor visits, ER visits. It will

tell you al lot.

Caro.