New Autonomic Clinic Opening in Norfolk, VA (NEAR ME!)

So for any Virginians (and other East Coaster's) that haven't been able to get a full autonomic work up - I have great news!  (Insert happy dance while seated!)

I met with Dr. Chemali, who just came to Norfolk, VA from the Cleveland Clinic, and specializes in Dysautonomia, and has worked with some of the best minds in the field.  As we all know, Mayo, Vanderbilt, and Cleveland Clinic are where you go to get quality autonomic testing done.

Well, he is opening a full lab right here in Norfolk!  It will be located in the new Heart Hospital of Sentara Norfolk General.  My understanding is that it will be fully up and running in September.

This is a God send for me, and I think many others.  There is a SERIOUS shortage of proper equipment to diagnose Dysautonomia in Virginia, and even more so there is a shortage of specialists. Some facilities may have a few tests they can run, but their doctors don't really diagnose and treat the big picture that is dysautonomia.   I was shocked when Hopkins had no one to help me while I was there.

My hope is that Chemali will train up a few doctors and get the ball rolling, or maybe bring in another specialist or two, and start seeing patients and doing clinical trials/research like crazy.

Here is a link to Dr. Chemali and the Neurology Group's Info.   No one else in his group treats dysautonomia of any sort (I've seen a few - don't bother), so make sure you ask for him.  His nurse and the staff are very nice.  This is very exciting!

Now; a quick illustration/exploration of various happy dance options (modified to work with your POTS of course):

the nun happy dance

the Calvin and Hobbs happy dance

the robot with no arms happy dance

the cool turtle happy dance

the all time classic Snoopy happy dance

Hope everyone is having a great and unPOTSy day!
--Claire

What The Hell is POTS?

I made this based on a pole of the experiences of POTSies in the ER, and hopefully as a funny educational tool.  It is a bit PG13, the only bad language is "freaking" and "hell" said many, many times.  Feel free to share.  Enjoy!

Skype Meet Up Tonight! 8PM EST

Hello VA/DC/MD (and beyond!) POTSies!

Tonight is our first try at a Skype meet up!  Until we get enough people participating that we can split up geographically - I opened this up to anyone anywhere affiliated with POTS - including parents, caregivers, etc...

In order for you to participate, I need you to send me a contact request so I can add you to the conference call group "Team STOP POTS".

Here's how to do this:

1.  Get a FREE Skype account at www.Skype.com

My Guest Post of Living With Bob: Staying Sane With A Chronic Illness

I was honored to have this article published by Rusty Hoe on her popular blog - that I adore - Living with Bob (Bob is Dysautonomia).

 If you haven't checked it out, you should!  Her writing and sense of humor dealing with this maddening disease are amazing.

Monday, 12 March 2012

No Need For Padded Walls: Staying Sane With Chronic Illness

Fourteen , count 'em - FOURTEEN - months either at home or in the hospital/doctors offices for me, with no social outings.  And I'm not the only one, or even close to the one with the longest record of time spent indoors.  I had been feeling a bit overwhelmed by the lack of outdoor time, and constant focus on my illness, my kids (with no break), and searching for ways to get better.  Life is about balance (insert "oooommmm" yoga zen breathing pause for effect here).  Even if you are not completely bed or home bound such as myself, you may be severely limited by your illness, and going a bit bonkers being indoors more than the average healthy person, not to mention being sick.

 

So how the heck do we all stay sane?  I REALLY want to avoid the padded walls of a psych ward, even though the padding wouldn't do much good - as I can't walk far enough to run into them.  Padding on the floor would be great though, in case of random face planting incidents. And as sexy as helmets can be - I'm trying to avoid those too.  But just in case, here are a few stylish options, for those of you that unintentionally share my love of hugging the floor and have a fear of the sharp hard edges found in bathrooms:

From Battling the Grinch, to Battling the Bulge; Cooking Healthy for a Month

This is going to seem really tame and maybe boring after the excitement of the last week or two with the "Battle of the Grinch" as I've come to call it. By the way,  Dr. Levine (who coined the term Grinch Syndrome) wrote a response to the excellent article on About.com about POTS and the Grinch controversy, featured here.   Levine danced around the issues, and you can see my thoughts in the first comment listed if you care to.

From "Battle of the Grinch" to "Battle of the Bulge," and I do like a dramatic transition - I have been struggling with blood sugar swings, and eating out of a cooler of pre-made/pre-packaged food daily that my husband kindly puts together for me (I can't sit up long enough to make food or last long enough in the kitchen to prepare anything).  Add to that being gluten intolerant, having random anaphylactic reactions to foods/smells (possible MCAD), and you have a recipe for linited and fearful eating habits. Not to mention fat thighs and a post baby belly that looks like my daughter could still live in there at 6 months old.  My son actually told me I have a big butt tonight.  He was being silly, but kids don't lie!  Talk about a reality check.

The ABC News Aftermath; Junk Reporting and THE GRINCH Making Life Harder for POTS Patients

As many of you in the Dysautonomia community know, ABC recently aired a segment on World News Tonight with Diane Sawyer about POTS (on 2/29/12).  Leading up to that broadcast, a series of events took place that amazed me and reinvigorated my faith in the power of patients as a community.  We mobilized.  We complained. We used every connection we could.  And it worked - sort of.

Here is a breakdown of the history of, and problem with "The Grinch Syndrome", along with a timeline of what took place over the last week.  I also include a call to action (once again) from our amazing POTS warriors to force change that is long overdue.  

THE GRINCH PROBLEM

There is a researcher out of Texas named Dr. Levine who proposed that POTS be renamed The Grinch Syndrome.  He did this based on his study that was published in the Journal of American College of Cardiology in 2010 called Cardiac Origins Of The Postural Orthostatic Tachycardia Syndrome. The presumptuous name of the study is the first clue as to how preposterous this "study" and its "conclusions" are.  Levine and his researchers claim that, "These results suggest that POTS per se is indeed a consequence of deconditioning and that carefully prescribed exercise training can be used as an effective non-drug therapy for POTS patients."