New Member Cala And All About Me :-)

[Cala]

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!

[Guest Hanice]

Nice to meet you Cala! We are pretty open here with eachother! Just today I showed everyone my boobs here on dinet! Lol!! They look rather square in those pictures lol(Mri) all hats are off amongst our POTSY possy. Good attitudes welcome :-)How old are you? Im 26.

[rubytuesday]

Hi, Cala.

Greetings and good to meet you, but not under these circumstances, but then because of these circumstances. Your assimilation to a carnival ride and from minute to minute are just how I feel--the ups and downs and surprises out of nowhere and being here one minute and then out to lunch.

With me, I think this body stays in fatigue mode most of the time just trying to sustain a blood pressure and heart rate that will keep me afloat. When this pacemaker kicks in and boots my heart rate up, (multiple times a day), then it feels as if I've had a hard aerobic workout sans exercise.

Don't be shy here. I've found everybody to be very, very helpful and we certainly can all empathize with this. I must admit--I was a long-time lurker too. I think part of it was that I was still feeling quite overwhelmed. Being able to finally have people to share with has actually been quite cathartic for me. I've seen so many good articles and posts that have helped me learn far more detail than I get in a limited office visit (where I seem to leave thinking of more questions than I had before I went in).

You seem to certainly try to keep a positive attitude and your sense of humor. That is always helpful to me. What I hate most when I have syncope is not so much as how it embarrassed me but moreso as to how it worried/paniced others. When I had the first 3 episodes I tried to rationalize the causes as being--perhaps it was because I hadn't eaten before I went out, or perhaps the shower was too warm or perhaps I shouldn't have eaten before doing something. But the fourth time it happened, I was with my little grandson who was learning to ride his bike with training wheels. I was right behind him on my bike--so it took a lot of control and stamina with the leg muscles (no problem for a gal who was riding 10 miles/day in 50 minutes). Wrong. That episode landed me a call to PCP--demanded I go right in (it was closing time for them)--then directed straight to ER and 2 days in hospital and then the whole barrage of tests and medication trials and referrals and the rest is history. I even bought a cooling vest (never used it as I simply cannot tolerate the heat and high humidity and I cannot breathe) and a soft helmet (again--makes me hotter even though it is vented, as it seems to contain the heat in my scalp/head). I got grounded off my bike, driving restrictions, gardening restrictions when hot/humid, etc. The one thing that is constant is that I have to use common sense and stick to what I know I can and cannot do. But when I do have a good day or portion of the day--it is a gift and I jump on it.

Best wishes on this roller coaster journey.

ruby

[Cala]

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?

[Lethargic Smiles]

Welcome!

[Cala]

Hanice I'm 43 and "wolf whistles" to the boob shot /giggles

[Guest Hanice]

Lol! I like your pick. Is that a hermit crab?

[Cala]

That is a spider, with a water droplet for a hat LOL I love spiders!

[Hope]

Welcome!

[Guest Hanice]

Cala

So does my daughter, Halloween is spider themed this year! :-D

[Psalm 23]

Welcome !

[Lethargic Smiles]

Which blood pressure medication do you use?

[Cala]

I don't currently other than Fludrocort .1 mg and so much salt I feel like if I went into a stable the horses would chase me around trying to lick me LOL

I was on propanolol (sp) 60mg er for a while and I honestly thought my neurologist was attempting to kill me?

Why is it impossible to get those people to answer the phone??? Anyway... My neurologist agreed quickly when he "finally" heard my numbers, "oh yes please don't take any more of those!"

My sitting casual blood pressure was normally 110/70 to start with, heart rate about 100 and to dose me with that was epic LOL.

My problem is it NEVER stays there. I stand up it jumps then drops, I lay down it bottoms.

I'm currently wearing a cardionet thingy that I'm supposed to hit whenever I feel symptoms but they didn't define what symptoms I'm supposed to worry about, I have so many LOL so I'm 24 hours in just eyeballing the thing. About to dig on the forum for some ideas.

Anyway...back to the question...man I'm easily distracted... the jury is still out on my bp medicine until I get the results of this. SO any suggestions would be welcome. My doctors sure could use a gentle nudge that's for sure.

[Lethargic Smiles]

I also have low BP. It tends to be in the 90s on top. There's no way I'd be able to take a beta blocker if I didn't also take Midodrine! After I couldn't get my BP controlled with just sodium, we added Midodrine. A few months after that, the beta blocker was added.

[corina]

Hi Cala, welcome to the forum!

[cberau]

Welcome! Hopefully the camaraderie will help you as it does a lot of us. It's always good to keep a humorous attitude about the garbage we go through lol