Dec 15, 2010

Welcome to POTSgrrl!!!

Who am I?  Why am I starting a blog?

Well, I've been laying in bed sick, in and out of the hospital, for the last 11 months, but before that, I was an athletic, outgoing, energetic, environmental attorney and loving wife.  I'm still a loving wife, but most of those other descriptors don't fit me that well anymore.  After 9 months of medical hell, I was finally diagnosed (through countless hours of my own online research) with Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia, which is just a fancy way of saying my autonomic nervous system is really messed up

Over the past few months, I e-mailed updates to friends and family from my hospital bed, and many of them have told me that my way of explaining this dire medical problem is kind of funny, and that my story of getting a proper diagnosis is so outrageous, that people need to hear about it.  They keep telling me to write a book about this crazy roller coaster ride I've been on.  I don't know if I'll ever get around to writing a book, as it is difficult even for me to concentrate long enough to type this blog post.  I'm more interested in writing about this disease to help raise awareness, amongst the general public, but especially amongst the medical community.  It should not take nine months to get a diagnosis for any disease, but especially one so severe.  I live in the suburbs of New York City, and we are supposed to have the best doctors in the world here in NY, and I even though I went to the #1 rated hospital in NYC and #6 in the country, they were not able to give me a proper diagnosis.  It wasn't until I read something on the internet about POTS that made me think - "Hey, my symptoms completely match this POTS thing!"  I asked my doctors if I could have POTS - they raised their eyebrows and said they'd look into it.  Sure enough, after consulting with some other experts, they agreed I probably had POTS.  The internet may have saved my life.

I'm writing this blog in simple terms to help explain what I've learned about POTS to young people.  Many POTS patients are tweens and teens.  I'm having a hard enough time understanding and coping with POTS at 32 with 7 years of higher education under my belt, and I can't imagine how much harder all of this would be if I was still a kid.  I think everyone with POTS, no matter what their age, should try to learn everything they can about their symptoms.  The more accurate information you have and the more you understand your symptoms, the better your chances to find solutions that work for your POTS symptoms.

I also want other POTS patients to know they are not alone in their battle.  There are at least 500,000 POTS patients in the U.S. alone!  Since it is a difficult disorder to diagnose, and so many of us are undiagnosed or misdiagnosed for so long, my guess is that there are probably another 200,000 people who have it and don't even know it.  So remember, you are not alone.  We are all looking for answers to what causes this illness, and how the heck we can get rid of it and get back to our "normal" lives.

So read all of my blog posts and please feel free to post about your POTS experience.  I'd love to hear what state you're from, when you were diagnosed, what doctors were helpful to you, and what tips and tricks you have figured out that help you feel better.


  1. Hi There,
    Do you mind if I ask what NY hospital was so unhelpful? I've basically been diagnosed with POTS already but I'm going down to one next month to confirm it and want to compare notes. Please feel free to email me directly at Thanks...hope you're doing well...just found your blog and can't wait to read all the entries.

  2. Thank you so much for posting this! Lots of the information here has really helped me understand POTS. I was diagnosed only three months ago and I feel better knowing that I'm not going to die. XD I'm only thirteen, so this had made me feel much better about all this. I'm in Virginia and I went to VCU (I think that's what it's called) and I'm actually going to CHKD tomorrow to get another opinion on another possible medical condition that I might have. Here in the Hampton Roads area, it's really hard to find a knowledgeable doctor that actually knows what they're talking about.
    Thanks for posting this!