Saturday, June 2, 2012

New diagnosis and telling friends...

So we are adding Orthostatic Hypotension (also called orthostatic intolerance, OI) to the list of my diagnosis. So now we have tallied up PVC, IST, POTS (new doc isn't 100 % on POTS) and OH. Saw a Neurologist and within one visit he was able to confirm the issue of OH but we are still at a loss as to what is causing me to have all of these autonomic issues. So I will start Florinef (Fludrocortisone) and pray that I don't hit every side effect along the way, like rapid weight gain... SERIOUSLY!?!? Sierra has been taking it for some time without any side effects so I am going to be hopeful.

The kids are all doing well, they know some of whats going on, Dysautonomia is an invisible chronic illness... until you start sweating profusely, get dizzy, have tremors and or pass out... so with that said it would be kind of hard to not talk to the kids about it. They have all seen some form of my episodes.

Even though I blog about it I have not told most of my friends. I am not really sure how, I mean they don't make a 'I just got diagnosed with a chronic illness but I still want to go to lunch' card. Maybe those who read it should send me a 'hey I saw you got diagnosed with a chronic illness want to go grab lunch' message! 

I don't know how to bring it up to casual friends, especially new friends that I would like to get to know better. I don't want to drop it too early and become some downer that people feel kind of sorry for but on the same note I don't want people to find out because we went to dinner, I stood up and pass out either. Hmmm advise on this one is welcomed...

1 comment:

Kathryn said...

I understand your frustration. My environmental (invisible) illness is the chemical sensitivity and severe mold allergy. It is next to impossible to go anywhere with my friends. Some have never offered to come visit me and others make the accommodations necessary to do it.

It is hard to explain to someone you have just met that, "Oh by the way, I can't go into the restaurant to have lunch or go to a movie." It is hard but you will find your way.