LOVE THIS GROUP/

[Guest guest]

HI :

I can't say enough good things about this list or the work those

associated with it have done - like the EDNF and CEDA websites, EDS

Today, etc. Without these resources, I would have still been thinking

EDS was just hypermobile joints and stretchy skin (that's what the 1st

doc told me). Now because of info on the websites and discussions I have

seen here, I have been able to take these to a doctor. Now there are

about 40 problems I have blamed on t he EDS or the EDS is a contributing

factor. I have met some wonderful people I would not have otherwise met.

I also would not have a website so others could read my story, look at

home modifications and my splints if it weren't for 2 people here. In

turn, the website has a helped others with EDS with ideas to go to their

doc, OT, physio, etc with.

I also am in a small town and the local internist when she could not

seem to grasp what other docs have, thought I was just WANTED to be

sick!!! Right...SO I understand your labeling problem all too well. It

is hard to get people to understand. Thank God most in town seem to, but

you only need one to upset you. So many have nothing to compare EDS to

or even chronic pain and fatigue. I try to educate people but some you

just have to write off and say the heck with them. You can't make

everyone happy and don't waste energy on those ones. FOcus on the people

and activities who or that will help you. Like the doctors who are good

(not the idiots), the friends who try not the ones who label...

You never know what tidbit might be in an email that may make you

stop and think about something in your own life. Even, if like me you

are perpetually behind! Like you mentioned, people understand if they

don't hear from you. Other lists I am on, I rarely post because it seems

one person is always at it with someone else and you have to be sooooo

careful how you word everything. Like the Fibrom-L list and the Canadian

CFS list. I can't stand discord in person and hate to see it on lists

where people aren't feeling well.Maybe because EDS is rare and we know

how much we need each other that everything just flows in a more

positive way.

When docs suggest I look on line for a support group, I tell them

about this wonderful list and they just think it is great. There are so

few in NOva Scotia with EDS (I have met 3 people in person) so it is

hard to have a support group in person. PLus the docs here have so

little experience/ training with EDS that it makes it hard to get all

your problems identified and treated, so the list members help a great

deal. A perfect example: for years I suspected there was more to my

atypical Asthma. Thanks to Debby Keenan posting about her daughter's

visit to a respirologist who thought the EDS was part of the problem, I

was able to take this idea to my respirologist who agreed. SO I have

gone from being treated like a freak or a fake (by a handful, but a

handful is too many) when I would go to EMerg - to now knowing my

airways are collapsing. This is also why I have the sleep apnea. I found

out 3 years ago, my first admission for asthma in 1990, the

respirologist, who was not one I had ever seen before, wrote " query

Munchaussen's syndrome " as the diagnosis. He ignored the elevated white

blood cell count, the positive sputum culture and the poor peak flows to

label me with something I never had. If I had only had the EDS diagnosis

and info then. There is now a letter on my chart in 2 places saying I

don't have Munchaussen's. That is the ultimate insult - when you are

really sick, rather than trying to look beyond one's own experience and

knowledge, pull out the psychiatric diagnoses. The respirologist I saw

in 1999 and last month saw this guy at a conference and told him about

his misdiagnosis. I guess the color literally drained from his face. I

was also able to call someone's internist in New York and got some ideas

and explanations to go to my docs with. To me, this help is priceless

and there would be no other way to get it.

Rather than splitting the list, maybe just being very specific in

the subject headings would help.

Hugs,

Joyce