How I Lost Weight, Quit Smoking, Cured Insomnia, Became Enlightened, Paid Off My Credit Card Debt and Raised Three Amazing Kids



asseenontvMy Dad sends me news bytes about the various miracle adverts he sees while watching Red Eye and even tho I’m fairly certain that the answer to anything will not come from Fox “News“, however I have only respect for my Father’s good intentions.  He loves me and wants me to feel better.  And that’s my take away when he tells me about the latest and greatest breakthrough pill-a-ma-gizzmo-protocol-program that is going to cure my life limiting illness.

So what’s the harm really in those look-at-me-and-my-success stories?  If they help one person in a thousand they have value.  If someone reads it and holds on to hope that helps them find happiness in the moment that’s terrific.  But there’s another side of the one-in-a-million, ur-mileage-may-vary case study of One that actually impacts far more people on the sidelines of the healing journey.

I remember my best friend in college went on national television on the Today show after Christopher Reeve‘s super bowl commercial aired which pictured a computer generated image of the  paraplegic actor walking.  My limbless friend wanted to remind people that not everyone will get up out of their wheelchair and walk.  She was much more articulate of course, and had several talking points supported by data that demonstrated just why she and many other people in the disabled community were appalled by the digital fabrication 1, 2, 3, 4, 5, 6, 7, 8, 

There are fewer things that spark me to dust off my soap box and stand up and proselytize these days because I simply don’t have the stamina anymore to fight the good fight.  So I don’t tend to argue in forums, I rarely discuss social issues in social media and I don’t stir up drama in the virtual worlds for they are as much my home as anything in the real realm.  But every now and Zen something stays with me and I notice that despite my best intentions … I have an opinion.  Worse yet .. I have an opinion and I believe I am right because I’ve researched the actual data and have come to informed fact checked conclusions. Ooo, those are the worse kind of right.

Recently I heard someone talking about an exercise program that cured POTS.  And I admit this has been a trigger point for me since I read one of the first discoveries about this 10+ years ago. Endurance Exercise Training in Orthostatic Intolerance, Hypertension, Winker: 2005 Mar;45(3):391-8. Epub 2005 Feb 7.  As someone trained in the scientific method and who worked in academia for 20+ years it is my nature to question the methodology, to see how the numbers are being reported and then to dig deeper and see if the conclusions drawn are supported by the study.  Call it a nasty habit I have .. I fact check.

I’ve also tried a dozen medications, a handful of exercise regimes and several of the facts and fads of allopathic and holistic cures out there.  And as I said in my video some things work for some of the time, but nothing at the moment is working very well for me.  But back to the data and well meanining people with best intentions.  What’s wrong with a sound byte that says 71% of people are cured of POTS with a three month aerobic exercise program?  Nothing if it helps a single person who becomes more active and is thus able to walk away from their disability.  Nothing at all if it generates more research that leads to more treatments and cures down the road.  But what if instead it makes it harder for seriously ill people to file disability claims?  What if more doctors dismiss the symptoms of dysautonomia and fall back to the belief that its all in our head … or we are simply lazy (not exercising enough)?

But wait, 71% of the people in this study got better!  That’s what the people are saying.  That’s the word on the street.  And who am I to try and discourage anyone from doing such a simple thing like walking more (or boot camp training) in order to completely restore their health to their remembered self!  Who am I indeed.  Well, I’m Karma.  And its already clear that I’m a bitch so let me take the soap box out and hobble up with my cane in hand.

The problem is simply 71% of the people in the study didn’t get better.  The authors/researchers never said that.  What they did do was honestly provide enough information for anyone who reads their scholarly work to do the math and realize the vast majority (59%) could not complete the study because they were unable to do the exercise protocol.   It was only 71% of the fraction of the people who could actually complete the program and then only 12% did not test for POTS in six months.

People come to POTS from various paths.  You know like the astronauts who come back to earth with severe orthostatic intolerance.  Some people experience POTS for a brief period of time after a viral infection, or postpartum, or due to a complication from another illness.  Because of the great divergence in the community there are some people who will recover.  And that’s a good thing.  It’s important for more research to be done to try and figure out who these people are so they get the right treatment early on in their diagnosis.

For some of us with underlying genetic defect in our connective tissue what works to help us on a day to day basis might look different.  For those with an auto-immune disease the key may be found in another direction or a leaf yet unturned.

So I thank my Dad and well meaning people who send articles about options that I should look into that might make my world less pain-filled.  And I promise to read them all and know that they were sent with the best of intentions and perhaps one day one will actually prove useful if not to me … to one of my three amazing kids who unfortunately share my genes.  Because I am also the parent who looks on feeling helpless because I love them and I want them to feel better.

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