New Virginia Support Group - STOP POTS Virginia!

Due to the complete lack of local resources, I have started a group called STOP POTS Virginia.  If you are dealing with dysautonomia and or POTS in VA, or elsewhere, please connect with us!

My goal is to provide tools for patients when dealing with doctors and medical professionals who do not know about POTS and Dysautonomia. Find tips, resources, and ideas for keeping your sanity and getting the treatment you deserve.

 

Website/Blog

On Facebook: STOP POTS VA page

Email: stoppotsvirginia@gmail.com

See all the pots? Get it? 

I have big plans for launching an awareness campaign aimed at doctors, schools, and the general public (through media and literature) so others do not have to go through what I have.  I have had POTS for almost a decade, and am just now starting to find doctors willing to hep me find out why. Not acceptable!  There are too many of us out there looking for answers, being misdiagnosed, and treated like we are nuts - all because of ignorant (but sometimes well meaning) individuals. 

If enough people connect, may start a closed Facebook group for VA folks, let me know if you are interested.  Hope to hear from you! 

  

The Year I Spent In A Room Not Complaining

PREFACE:
So today marks the first day a year ago that I became seriously, life changingly ill.  I was ill before, but it was manageable. But this day last year my entire life changed, and it has not been pretty.  I debated whether or not to publish this, I've been writing it for a few days as this date loomed, but I know there are others dealing with these same issues, so maybe it will help someone.

The Year I Spent In A Room Not Complaining

My son and I snuggling with a bag of chips.

Not to be a downer, but I have to say that 2011 sucked majorly. But it also brought great joy, and I have tried to focus on that as much as humanly possible.  The birth of my daughter was nothing less than a miracle, and she is healthy and thriving.  I have an amazing family.  I have tried to remember how good I have it compared to the majority of the world, those living in harsh conditions in third world countries, people with terminal illnesses, the homeless, etc...

But really, I have been worn down by the events of this past year, and my current state of health.  And the fact that my only outings from beyond the four walls of a room have been to see doctors.  I have spent the entire year either in a hospital room, a bedroom, or on a good day - a living room. I've been on our balcony 4 times. Needless to say the four wall situation is closing in on me and had gotten old a long time ago.  Putting on a happy face and being fairly silly and upbeat is my natural tendency, not in a fake way, but because I usually really truly am grateful for my life and everyone in it, and I enjoy trying to make others laugh. But this has been the trial of a lifetime, and I have had to fight with every ounce of my being to stay sane, let alone positive.  So I am tired.  Physically, mentally, spiritually, and emotionally. 

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.

POTS, Clots, & Closing My Successful Business (Part 1)

I've had a lot of people inquiring about Bella Fora services and asking in general what happened to me (the owner - Claire). That's actually very flattering, I love that I am friends with many of my past clients and have built relationships with them and other vendors in the industry.  In an effort to write everything down cohesively, and out of a bit of selfish I don't want to have to keep typing this-itis, I've decided to share publicly what has been a very tough battle for me (and my family).  Hopefully this may educate people as well about my disease, of which very little is known, and even less is publicized.

I have developed a real affection for fainting goats.  This may seem strange, but you will understand why as you read on. I feel a tremendous connection with them, see a great short video of them in action (or inaction) here.