Saturday, January 28, 2012

Who Will Hear Us?

I found this in 
This is an except from the journal article Postural tachycardia syndrome and anxiety disorders  (by Svetlana BlitshteynClinical Assistant Professor of Neurology, State University of New York at Buffalo School of Medicine and Biomedical Sciences):
"The results of the study demonstrate that patients with POTS do not have an increased prevalence of anxiety disorders compared to general population, thereby challenging a common misconception that patients with POTS are more likely to have anxiety disorders. The study by Raj et al. is in agreement with two other studies that differentiated POTS from anxiety disorders. One study showed that excessive heart rate response during a tilt table test was not due to anxiety (2), and another one demonstrated that symptoms of POTS were phenomenologically different and clinically distinguishable from panic disorder symptoms (3). Taken together, the three studies provide evidence against a hypothesis that POTS and anxiety disorders are linked either by association or causation. "
It makes me ask: when will doctors hear us as a whole?
When will be stop being forced to fly across the country to find the good ones, left with nobody at home to manage things?
When will ER trips stop becoming sources of severe fear?
When will this end?

The author in another entry spoke of how she almost died of a blood clot from her PICC because the doctors said her chest pain was ANXIETY.

One night, I went into septic shock for the third time.
I didn't know it.
All I knew is that something was really wrong.  And I really wanted help.
But I almost didn't hit my call bell, because I was afraid that they'd say nothing was wrong and that they'd literally yell at me to "stop it, stop shaking, stop whatever, you're fine."
Of course they didn't, it was mass chaos as they worked frantically to save my life.

I've had so many wonderful, AWESOME drs. Dr's I've called awesome by name. Dr's I've called by first name, Dr's who have kept me going.  and they heal me slowly from those bad ones who hurt me and cut me deeply and make it really hard to trust.

Those ones have no idea how much they take away.
and I really wish they knew.
I speak out because I have heard my story spoken so many times, by others.

POTS, dysautonomia, mitochondrial disease, ME, gastroparesis, Digestive tract paralysis, chronic fatigue syndrome, lupus, TM, MS, I could go on and on. These are all real and there is no excuse for pushing a patient away because a physician does not understand.  It's ok, in my book, to hear from a doctor "I don't know."  The doctor's I respect the most say that to me all the time!  And that's ok!  I know they're working on it, maybe one day they'll know more.  It takes a brave person to say they don't know everything.  Nobody can.

So docs out there who are willing to try hard, find answers that you can, and help us reach doctors that can help us better (its ok to fly all across the country when thats the case!) Thank you.  May the residents and med students and interns under you learn from that, and those working with you see and take something from what you are doing.  I thank my God for you every day!



  1. I want to copy and paste this !!! I love is totally me...and I almost died from a blood clot in my PICC that extended in my chest, neck and heart....but they in the ER said NO its NOT possible...then MY arm went BLACK...oops is all they said.....ty for posting this

    1. You're so welcome. Things need to be said, sometimes, even if they're hard.

      Hugs, Milly