miss POTS...a dysautonomia blog

And here we are...

I'd like to welcome you all to the miss POTS blog. However, if you're here for the same reasons I am, a welcome really isn't what's in order. If I could give you a nice pile of dishes that you could throw against a wall - feel them smash, hear them break - I'd rather do that. I'd love to do that myself right now, actually.

miss POTS is a blog for people concerned with, interested in, have POTS - Postural Orthostatic Tachycardia Syndrome. It's a form of Dysautonomia - dysfunction of the autonomic nervous system. And it's a syndrome because no one knows what causes it nor cures it.

Lovely...just lovely...

My reasoning behind the word 'miss' is quite simple. If you have POTS like me, you've lived through the explanation already: POTS is so easily, so frequently misdiagnosed, you'd think the medical community as a whole was still practicing medicine as opposed to knowing what the hell they were doing...

Oh, yeah. They are practicing.

Misdiagnose me again. Misinform me again. Misenrage me again, why don't ya! I'll pay through the ears for something, anything, to blame for the way I feel...

I was misdiagnosed for years - aka: told I was simply hyperventilating, told I was just anxious, told I was depressed, go see a shrink. I've had heart monitors, lung x-rays, EKGs, EEGs, MRIs...I've seen a myriad of doctors who've performed every blood test imaginable, only to come up with one simple unanimous conclusion:

I'm perfectly healthy.

My heart is perfect. My lungs, perfect. Brain perfect.

Then why can't I breathe? Why do I have roaring in my ear? Hair falling out? Why am I always dizzy? Foggy? Have an elevated blood pressure the moment I wake up? Feel like I haven't slept in days? Can't think straight? Am so fatigued I feel like I'm walking through a sand pit all day long? Breathing through one? Why does walking to the mailbox tax me like a marathon? Why can't I run without my face going numb? Stand for more than two minutes without my arms going numb? Why can't I retain salt? Why am I so dehydrated that I've been to the ER and almost died because no one could figure out what the hell was wrong with me?

WHY WHY WHY?

And all the doctors say...

Because you are perfectly healthy...

Well, shit. That's just about enough to make anyone go nuts.

Hence this blog. I need somewhere to vent. To purge. To complain! I feel so damned geriatric 90% of the time, and I'm only in my early 30's! I have a family. A business. Aspirations. Dreams. But instead of loving life to the fullest and taking care of everything the way I want to, need to...instead... I feel like I'm dying.

Maybe in my venting, researching, complaining, thinking things through, I'll find some ways to make myself feel better. Maybe I'll help someone out there help their doctor get a clue because they have the same symptoms I do and all they've heard so far is, "your just depressed. take this pill."

I don't want to be sick. I want to be vivacious. I am alive, aren't I? I love my life! But this stupid assed POTS...I'm going to figure it out. I'm pissed off and determined. I guess that's what it's going to take.

So maybe together we can find a reason, a cure. I'll post everything I feel and find, okay? You do the same. The only way to get better, I've found, is to be your own advocate. Your own researcher. Doctors aren't working 24/7 for you. YOU have to. I have to. And that's how we're going to figure this shit out.

Alrighty then.

Miss POTS, over and out.