I've been thinking, uh oh......

[briarrose]

I?ve been thinking, uh oh?. Not always a good thing

With everything that we?ve been though here (as POTS patients, NCS, EDS, etc.) we?ve had to learn to advocate for ourselves, not trust doctors because they don?t always know what?s best for us or don?t have the guts to tell us that they don?t know, so we have to keep track of our own medical records, research our own problems and inquire from others who experience things that we are told are not part of our illness (funny, I usually find someone or several someone?s that experiences the same symptoms as I do.)

Anyway, my point is that we could start our own service, teaching others how to watch out for themselves in the medical community, asks questions and most of all advocate for themselves. When in doubt, keep looking. And never accept someone telling you that you?re crazy when you know better!

Who knows you better than you do?

Steph

[Guest tearose]

uh oh, you're thinking? Don't worry briar, it will pass. Or, maybe you'll just pass out! lol.

Actually, I like your idea. It will be interesting to see what the feedback is.

I know there are self help books out there dealing with chronic illness. Nothing as specific as you mention on POTS. What format would you see this POTS information in?

I think what drew me here is that there is a nearly immediate connection to people who are as challenged as I am and we support each other. I think people need to be interactive for it to work.

There aren't any dysautonomia support groups around. That seems too complicated. Maybe a hotline?

We could call it the POTLUCK line. Just being silly.

I guess my sinus infection is resolving...my sense of humor will hopefully improve too.

Thanks for the brainstorm, tearose

PS. Briarrose, I never found your "additional wardrobe list".

[MightyMouse]

A nonprofit I used to work for did this for parents of children with autism. We had an advocay training program and would offer mentoring services to those who needed help with either the medical or educational system. All the mentors were parent volunteers. Worked great--they still have it operating today...like 10 years later? Cool, huh?

Nina

[briarrose]

Tearose and MightyMouse thank you for your replies.

Tearose, it doesn?t bother me about my information being out there. People shoot me emails and ask me questions all the time and I?m happy to be their for them as they are for me when I?m struggling.

Sorry you didn?t find my post at the NDRF, I was simply stating that with this illness I?ve found that I own a second/third wardrobe (summer and winter.) Extra long johns, wooly socks, sweaters, jackets, vests (I usually wear 2-3 layers of clothes at work to stay warm.) In the summer, I bought extra lightweight clothes to keep me cool, summer dresses, tank tops, shorts, sandals and stocking-socks.

MightyMouse, that is cool about the volunteer program that you used to be a part of. I realized last month when I was in the emergency department that I was too ill to explain to the emergency doctor what was going on with me. I relied on my ex-boyfriend to advocate for me and I?m glad that he was there. He went with me last summer when I saw Dr. Grubb and understood everything that Grubb explained, so he does well explaining to others. It doesn?t matter if I was having an emergency or just having a regular office visit, if I?m not feeling well I don?t do a good job explaining things to the doctor. Some of it is probably brain fog, usually hypotension and the inability to think! It?s nice to have someone along that knows everything and can explain for you.

Steph