Saturday, April 28, 2012

Nominate a POTSy Mom or Dad!

Hey everyone!

My munchkins <3
With Mother's Day and Father's Day fast approaching - consider nominating your favorite POTSy parent for local and national "Best Mom" or "Best Dad" !

I know loads of amazing parents caring for their kids that have POTS, as well as POTSy parents trying to raise kids while battling this condition.  We know how hard both are!

That person may win a cool prize AND get some much needed publicity/awareness for POTS!

Saturday, April 21, 2012

What Is Causing Your POTS? And Why It IS A BIG DEAL: A Printable, Sourced Guide.

Many of us hear by our doctors that POTS is "no big deal." 

Or they just plain have no clue what it is.  

Or, "you just have POTS."

Why do they think this?  Why don't they know what it is?  If an estimated million people have it, and even more have dysautonomia in some form, why don't they know?

As  patients (and hopefully the caregivers that see how sick we can be on a day to day basis), we know how big of a deal it is.  We know what a struggle POTS is, and how unpredictable and disabling it can be, even if it is generally mild and flares occasionally.   So why is this the view by so many in the medical profession, and why is it so unheard of?   I have been contemplating and compiling this list for a while now, and in light of the people we have lost recently in the POTS community, I thought this may be useful for those of us trying to find the cause of our POTS.  Also to explore why it is a big deal, even if POTS per say will not kill you, and why, in my opinion, it is absolutely necessary to find out what is causing your POTS.  Not only to rule out the really dangerous stuff, but to avoid the medication merry-go-round, as I like to call it.     

Monday, April 9, 2012

Keep Calm, It's All In Your Head...


Keep calm and carry on. Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition? 

Um, yes!  Here it is....

Sunday, April 8, 2012

#HAWMC Day 8: Best POTS Convo Ever

WEGO HEALTH ACTIVISTS WRITERS CHALLENGE: Best conversation I had this week. Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

"We have a great new drug for you to try, it cures POTS and dysautonomia." --Doctor

"Really?  You can't be serious." --Me

"And (dramatic pause), we figured out what was causing all your random food reactions, and you can now eat whatever you want." --Doctor

"This can't be real." --Me

"You will be walking, then running, and able to scuba dive and snowboard again. You'll be able to care for your kids, have wild nights out on the town (and indoors) with your husband, and you can eat out wherever you want." --Doctor

Saturday, April 7, 2012

I'm Angry and I Know It (wiggle wiggle wiggle): Day 7 WEGO Challenge

WEGO Health Writers Challenge Day 7: Health Activist Choice! Write about what you want today.

I'm Angry and I Know It (Wiggle Wiggle Wiggle)
Well then, this will not win me any "she has such a great attitude" points, but today I want to write about how much I hate my life and am angry right now.  Because it sucks.  I am pissed, and there will be swearing- oh yes, there will - and you have been warned. This is not a pity seeking post, its an explanation of what life is like, and how you can better understand and be there for any person you know with a chronic - or LONGTIME - illness.  Not to be confused with the flu or allergies you have been bitching about on twitter.

Friday, April 6, 2012

Updated Article Library!

LIBRARY: Articles For A Doctor/ER Visit

I have found that many of my local doctors have very little (if any) knowledge about POTS and Dysautonomia.  I usually try and bring at least one journal article with me to give them, and I stress that these are peer reviewed journal articles, not just random stuff from Google or Wikipedia.  They are research studies published in medical journals, and should give you credibility in the doctor's eyes, and if you are lucky, won't bruise their ego :) 

I have categorized them by issues common to POTS sufferers when trying to obtain treatment from both general practitioner doctors, specialists unfamiliar with POTS, and ER doctors.  Most are full text - but some are only abstracts, your doctor should be able to use it to look up the full article if they feel it's relevant.  It is a starting point - I DID NOT CITE THESE IN PROPER SCIENTIFIC CITATION FORM INTENTIONALLY.  Hopefully they are more accessible this way and you can pick and choose which one's you need. You may want to add the most relevant articles to your POTS Binder. If you have any to add or topics you'd like covered, please leave a comment or contact me. 

General POTS Info/Treatment:

1.  The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management (this in my opinion is by far the best synopsis of POTS for any unfamiliar doctor, and the complete article is free) by Satish R Raj, MD MSCI, Autonomic Dysfunction Center, Division of Clinical Pharmacology, Departments of Medicine & Pharmacology, Vanderbilt University, Nashville, Tennessee, USA
2.  Orthostatic Intolerance (an AMAZING guide to all the forms of OI, including POTS, NCS, etc...) Dr. Stewart, Associate Chairman of Pediatrics, Director, Center for Hypotension, Westchester Medical Center; Professor of Pediatrics and Physiology, New York Medical College.

3.  The neuropathic postural tachycardia syndrome . Robertson D., Jacob Recanati Autonomic Dysfunction Center and the Department of Internal Medicine C, Rambam Medical Center, Haifa, Israel.

Wednesday, April 4, 2012

Why I Write About POTS: #HAWMC Day 4

Day 4 WEGO Health Challenge:
I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping.

The main goal of this blog was to create resources for patients and awareness for the public for POTS.  I had none when I was diagnosed, I don't want others to go through the same.  I write on my personal blog over at Bye Bye Bella Flora for therapeutic and personal reasons, but this site was created to help others, and by doing so it helps me as well.

In my pre-POTS days, I wrote for scientific publication as a marine biologist, and enjoy reading and researching, and hopefully sharing that info with others.  I have no desire to be profound or poetic, I like to link out to others that do that for me.  I don't normally post inspirational quotes like the one on the right.   I'm more science minded - and I want patients and families to have a place to find resources for dealing with everyday life: tools for dealing with family, friends, employers, DOCTORS, and medical professionals as a whole, because my journey has been a bit rocky with the MD's.  

I also have a passion for silliness, and the best way I've found to cope with this ridiculous disease is to make fun of it sometimes.   Laughter is how I have survived the last decade, and especially my nine months of confinement in the hospital, and now seven months at home with no outings.  This blog gives me purpose for now, at least I feel I'm trying to do something, instead of rotting in bed doing nothing. 

I've been a bit lax recently in posting new links and resources because of the new BIG project I'm helping found, and I can't wait to share more with everyone.  The next few years are going to be very exciting, and changes - they are a coming!  For the better.

Sending love and thoughts of upright posture.....

Tuesday, April 3, 2012

Great Video: Managing Orthostatic Intolerance/POTS/CFS by Dr. Rowe at Hopkins

Wanted to share this - it was posted on Dinet and I found it very informative.  There is a lot of research about the fatigue that accompanies POTS/Dysautonomia and the overlap with CFS, and according to research, people with POTS have more intense CFS (Chronic Fatigue) than those without.

On a personal note, Dr. Rowe was the only doctor to step up and recommend treatment for me while I was at Hopkins and pregnant, and consulted with my team that had no idea what to do for me, even though he is a pediatric doctor.  He personally responds to emails, even though he is so busy he is no longer taking new patients.

Here is the most recent paper published on the subject:

Clin Sci (Lond). 2012 Mar;122(5):227-38.

Increasing orthostatic stress impairs neurocognitive functioning in chronic fatigue syndrome with postural tachycardia syndrome.

Monday, April 2, 2012

Day 2: Yoda Does POTS (favorite quote)

Challenge: Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

Well, this was a really really easy pick for me - I have an absolute favorite quote that I have both a love and hate relationship with in terms of my chronic illness, POTS.

 Drum roll......

My quote comes from a little green man who has inspired me my whole life. His name is Yoda.

"Try not. Do, or do not.  There is no try."

I even found a nice graphical illustration for the quote:

Why I love this quote:

It's completely true.  There really is no try.  You either do something, or you don't.  I'm not TRYING to oversimplify, I actually AM oversimplifying.   

The definition of try is (according to the The American Heritage® Dictionary of the English Language):

try  (tr): To make an effort to do or accomplish (something); attempt: tried to ski.

Why I hate this quote: 

It leaves no room for excuses, and I admit I still fancy a good excuse once in a while.

"Trying" to me implies failure.  

"Did you do your physical therapy exercises today?"

"I TRIED, but I wasn't able to." 

What that means in my life is that I actually DID three or four reps, felt like my heart was pounding out of my chest and my muscles were spasming painfully, and I stopped.   So I didn't just try, I did it.  I did not fail.  I did not complete the entire task or goal, but I DID something.

If I skipped doing my PT all together, than I did not try, or DO any PT.  And there is nothing wrong with that.  Some days I can't even get out of bed for much of the day, and can barely make it to the restroom.  I have to consider what to spend my limited energy on, as I have a 7 month old that I care for alone while my husband is working, and a four year old that I like to be functional enough to hang out with in the evening when he gets home.

I know that on bad days, "trying" much of anything will land me in even worse shape for a week afterwards.  I have learned to trust my body, and push my limits when appropriate, and DO when appropriate - but I have finally gotten to a place where I am ok with not doing as well.  

And there is no try.    Simple as that.