Cala

I think we are our own worst critics! Do I look healthy? Probably to someone who doesn't know me I look fine. To myself I can see the damage this condition does to me but I do try to go easy on myself with the criticism. Some days it's impossible and I just avoid the mirrors LOL On a totally side note here... Racer, I know you don't know me Hon but please...please limit your contact with people that tell you things that only make you feel worse. And try not to let comments that downplay your doctors care. I can't stress this enough.

I am 43 ..I think... LOL

Oh my gosh!!! That sounds awful!!! The event happening with your grandson!!! That almost made me cry! Poor child...I can only imagine his reaction to that. I'm so sorry that happened to you. I do have a question though...you mentioned a pacemaker. My blood pressure has started it's downward spiral. Or thats how my neurologist put it anyway. It's falling and it refuses to get anywhere close to even normal any more regardless of the medication. However my heart rate is still somewhat responsive (about 80 to 120) He's mentioned a pacemaker several times but I'm not wrapping my mind around how that's going to work LOL because my heart rate doesn't seem to be sputtering out on me as of yet. Was your heart rate falling low when they did the pacemaker?

I'm going to try and bump this up instead of opening a new post. I too am about to head to Vanderbilt very soon. My doctors will be Dr David Robertson for my Dysautonomia and Dr Christopher Lee for my Polyneuropathy. This is not for the research project it's an actual visit visit thingy. Any input on Vanderbilt in general would be greatly helpful as I'm a nervous wreck LOL

Everyone likes to joke and say that I am not from this planet. I am originally from mercury. Heat is my friend. I'm most comfortable around 80 to 85 degrees F "but" since I don't sweat unless I'm already overheated, I have to be careful in temperatures over 90F so I don't give myself a fever.

Hello everyone! My name is Cala and I've been lurking around the forums for a while, actually a long while...reading, getting to know many of you from your posts, and generally being a very nosy person LOL I'd have said something much sooner, but my being a complete boob, I didn't read all the instructions to becoming a member and well...it took a while to finally get told what I'd done to mess myself up this time ha ha ha but anyway, here I am! Yay! The one thing I did find out however is that I'm so very "not" alone with this crazy condition I've been dealt with. I have Dysautonomia aka autonomic dysfunction (of course you guys know this but I put it in here out of habit...) I also carry I tag of severe Polyneuropathy. This means, that all my blood pools in my feet but I can't feel it LOL yes my sense of humor is sick and twisted. I've developed that over the years as a way to survive this I suppose. IN all seriousness, I can't feel my feet and legs from just above my knees down nor my hands and arms from just below my elbows. They work alright I just don't feel sense like hot/ cold and it takes a really good jolt of pain like broken bones or 2nd degree burn to light them up pain wise. As for the Dysautonomia, it's a carnival ride most of the time. Like I've heard so many of you say, some days it's alright, some days not. Mine is hour to hour LOL I can go 0 to 60 in 2.8 seconds (the Corvette ain't got diddly on me!) There is not anything quite so amusing as retelling the story for the thousandth time about showing off your Halloween panties IN JULY in the checkout lane at the supermarket because you passed out "in" the buggy because you were just scooping out the broccoli spears... that's a favorite of my best friend bless her little black heart... I try to keep a very upbeat attitude about my condition nonetheless :-) Thanks for having me here! You guys seem so great! It's so wonderful to not be alone anymore! I'm so excited!