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MY BESTIE/ROOMIE WROTE THIS POEM FOR ME REGARDING DYSAUTONOMIA AWARENESS WEEK THIS WEEK!!:
Kara Jill Doering
Go Potsies, Go potsies!! When I say P.O.T.S (postural orthostatic tachycardia syndrome) You may find yourself with a ring to the eardrum. It's real I say, I see the pain in roommates' life day day. It attacks every system, like a predator in the night, deciding . . . what organ deserves my next bite! This syndrome is quite stealth, most doctors ... Read More rather not be disturbed (They all know the secret, this syndrome lacks a cure). The more we pass along what we read, someones bound to concede, wanting to fill this need for research. This week, September 14-20, is National Dysautonomia week. So find a blue ribbon and pin it on tight, it always starts a conversation, and meanwhile helps my roommates' and others fight the good fight!! LOVE YA KARA!! YOU'RE AMAZING=)
ANOTHER POEM MY DEAR FELLOW POTSy GIRL FRIEND WROTE THAT MANY OF US FEEL, BUT DO NOT EXPRESS. I BELIEVE THAT IT IS VERY POWERFUL!! MY FRIEND WOULD LIKE TO STAY ANONYMOUS AT THIS TIME.
"POTS
Heart racing, hands shaking, mind spacing, stomach knotting, and I
feel like falling.
Pale faces, wishing I could trade places, feeling weakness it's making
me speechless
Friends calling, I sit here balling wishing I had the strength to go
out while friendships start falling.
Looking normal though feeling a bit hormonal, mood changes and feeling
anxious. Trying to live a life in the middle of a fight with my own
body that I no longer have control of.
Eating tums, and there is no yum, popping pills because I'm ill,
staying home all alone, watching tv just my dog and me.
They don't understand they don't feel my bodies demand. I'm not lazy
nor am I crazy just because I'm sick and it's not visibile doesn't
mean I'm still invinsible. Being young and living on tums, constantly
tired is the going to get me fired?
I get tired of fighting, tired of laying and tired of explaining with
one question remaining.
WILL THIS ILLNESS EVER END?"
*****I ALSO WANTED TO LET EVERYONE KNOW THAT I JUST WENT UNDER AN EXPERIMENTAL/CLINICAL TRIAL PROCEDURE THAT I BELIEVE COULD HELP A LOT OF PEOPLE WITH POTS! I HAD AN ENDOSCOPY AND THEY LITERALLY INJECTED BOTOX IN THE PYLORIS OF MY STOMACH TO KEEP IT OPEN AND INCREASE MOTILITY=LESS NAUSEA********
There are many different forms of Dysautonomia, but I'm focusing on P.O.T.S. I have links to some amazing sites that give a lot of info for POTS and all other forms of Dysautonomia!
DYSAUTONOMIA;
IN A READERS DIGEST VERSION: WHEN 1or MORE PARTS OF THE ANS(autonomic nervous system)MALFUNCTION IN SOME WAY. THE ANS IS LIKE A PERSONS SYSTEM THAT "GOVERNS" OVER ALL BODY SYSTEMS. ANS IS RESPONSIBLE FOR REGULATING SUCH THINGS AS B/P, PULSE, BODY TEMPERATURE, CIRCULATION THROUGHOUT THE BODY including DIGESTIVE TRACT/URINARY SYSTEM, CONTROLS A PERSONS' "FIGHT or FLIGHT" RESPONSES,JOINT&MUSCLE PAINS, MIGRAINES,etc.
NOW THAT THE FUNCTIONS OF THE ANS WERE BRIEFLY EXPLAINED, I'M GOING TO LIST THE MOST COMMON S/SX THAT MAJORITY OF PATIENTS WITH DYSAUTONOMIA EXPERIENCE. SOME EXPERIENCE THESE S/SX INTERMITTENTLY & OTHERS IT WILL BE CHRONIC.~1: Tachycardia(fast heart beat)along with palpitations usually upon standing
~2: a lower in B/P that can result in fainting or dizziness
~3: EXTREME Fatigue
~4: visual disturbances
~5: constipation along with loose stools
~6: urinary retention/incontinence
~7: venous pooling in lower limbs(blood staying in legs/they can appear red@times)due to poor circulation
~8: poor concentration
~9: intolerance to heat(I like to call these "Tropical Experiences!")
~10:cold sensitivity
~11: migraines
~12:depression
~13:inability to exercise
~14:SOB(shortness of breath)upon exertion.
You can probably get the idea by now, that any type of DYSAUTONOMIA affects every part/system of ones' body!
I'm a 28 y/o female who has been recently dx with a form of DYSAUTONOMIA named;POTS(posteral orthostatic tachycardia syndrome) This is listed still as a RARE DISORDER most likely due to lack of awareness and research!!! Hence, why I'm trying to raise awareness regarding POTS!
I'm also a RN, but due to my s/sx from POTS, I have been out of work since April of this year! I've also been a patient at THE MAYO CLINIC in JACKSONVILLE,FL during this past April and May having every test known to man done(it seems), about 6 different consultations with Specialized MDs for those medical issues.
I'm still on my quest for finding effective treatment that will work for me! Treatment for POTS is trial/error right now and is individualized also due to the lack of awareness/research I believe!
POTS patients are usually young women, but can affect moth genders at different ages.The ration b/w women&men is 5:1. People who live with POTS are related to someone who lives with congestive heart failure and C.O.P.D.!!
Another common characteristic that many POTS patients present with is having some sort of anxiety & or depression tendency prior to POTS, but the exact link is not known at this time. Another characteristic that they are finding more common among people with POTS are those who are "Double Jointed" .
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