Wednesday, December 28, 2011

Drop It Like It's POTS

So - Someone commented anonymously on my previous post the phrase "Drop it like it's POTS", which I found hilarious for all the obvious reasons. 

1. It just works.  It rhymes.  It's catchy.  For anyone not aware, this is a reference to the Snoop and Pharrell song "Drop It Like It's Hot"

2. POTSy people (people with the form of dysautonomia called POTS) drop constantly - as in faint, or fall, or just generally run into things due to feeling dizzy.  This makes the phrase even funnier, because it is SO not hot.  But most of us don't look sick at all, and are total babes (I've seen all your pics online!).  So we are hot dammit, and that makes the doctors not take us seriously - the whole "not looking sick" thing.

3. POTSies can drop it like it's hot, because most have extreme temperature issues that exacerbate their symptoms. So we're dropping because we're hot, and our heart rates increase, some have blood pressure changes - but it's not at all attractive or taking place at the club, since most of us can't tolerate the hotness.  

Oh...the sweet sweet irony!

So in honor of my "chronically awesome" disease, here are some new lyrics:

Monday, December 19, 2011

I'm officially a charity case...

It has come to this! I am officially a charity case and raising money for our family. Here's the deal:

1.  As most of you know, I have a disabling disease.  I cannot be upright for long before passing out.  I can't even sit with my legs down in a car, because the blood pools in my legs/feet, and my heart rate and blood pressure go nuts and I pass out.  My disease is in a pretty severe state right now.  So - I use a reclining wheelchair to get around the house. Most of my day is spent with my legs up in a bed caring for my new daughter, and on my laptop while she naps. 

Saturday, December 17, 2011

You Know You Have POTS When...

I try to find humor in this ridiculous and disabling disease,  so ENJOY! 

1. You get water-boarded every time you shower from having to sit down.

2. You need a recycling bin next to your bed.
3. Sexy lingerie includes compression stockings.

4. The phrase from The Matrix "There is no spoon" has special meaning for you, and its not a good one.

5.  The thought of being in a padded room actually sounds great!

6.  The invention of Skype made you do a happy dance while sitting down.  And then your heart rate was 160.

Tuesday, December 13, 2011

Pots, Clots, and Closing My Successful Business (Part 2- Let the Humiliation Begin)

So....when we left off from my previous post (Part 1), I had just been admitted to the hospital in Virginia Beach because I couldn't see straight from crazy horrible extreme vertigo, plus all my other POTS symptoms gone wild (lightheaded, heart pounding, starting to pass out when I sat up/stood for too long, flu-ish feeling). I was very hopeful after talking to the internal medicine doc, he assured me that we would get to the bottom of this, and if he had to contact the neurologist I saw at UVA we would do so. Meanwhile I received a low dose of IV fluids, and had an MRI scan of my head with a fancy ear imaging portion to try and figure out the vertigo portion of this, which I never had in my life to such an extreme. I was also informed that there was no cardiologist or neurologist to see me at this particular hospital (awesome), and they would try and find an ENT for my vertigo.   They continued to try a few drugs for the vertigo - which didn't work, and seemed to focus on that, since no one had any clue how to treat a pregnant chick with POTS - so lets just ignore it.  Nice.