Hidradenitis Suppurativa USA

HS-USA

KELLY


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Joined Jan 18 2013
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FEMALE
53 years old
California
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Hidradenitis Suppurativa USA

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About Me

I AM A 49 YEAR OLD WHITE FRUSTRATED FEMALE WHO HAS BEEN BATTLING THIS DISEASE SINCE I WAS 20 YEARS OLD. I WAS DIAGNOSED IN MY MID THIRTIES. I HAVE BEEN CUT, BIOPSIED, TOLD TO WASH MORE AND EVEN HANDED A HANDFUL OF SCAPLE BLADES AND TOLD TO LANCE WHEN NESSESSARY. IT STARTED ON MY CHEST, HOWEVER OVER THE YEARS IT ACTUALLY SEEMS TO MOVE. BUTTOCKS, BEHIND THE EARS, UNDER MY BREASTS AND BETWEEN MY LEGS. I AM SCARRED IN ALL OF THOSE PLACES. AT ONE POINT I WAS TAKING 500MG OF TETRACYCLINE AND FOR ME THIS KEPT THE ERUPTIONS AT BAY, WITH ONLY OCCASIONAL ERUPTIONS. AS I BECAME FRUSTRATED WITH THE INSURANCE COMPANIES AND DOCTOR APPOINTMENTS ( I HAVE A VERY DYNAMIC WORK SCHEDULE) I STOPPED ALL MEDICATIONS OVER TWO YEARS AGO. THIS WAS AN ERROR ON MY PART. IN THE LAST YEAR I HAVE HAD MANY ERUPTIONS UNDER MY BREASTS AND AT TIMES IT BECOMES VERY PAINFUL TO WORK. ( I AM AN INDUSTRIAL ELECTRICIAN AND WELDER ) SO LAST WEEK I DECIDED TO MAKE AN APPOINTMENT WITH A NEW DERMATOLOGIST IN MY TOWN, DR. ZANG. AS I HAVE BEEN VERY DISAPPOINTED IN THE PAST SOLUTIONS, I TRIED TO REMAIN OPTIMISTIC AND PRAYED THAT THIS DOCTOR WOULD SEE MY SKIN AS A CHALLENGE AND TRY WITH PASSION. I WAS IN HIS OFFICE FOR LESS THAN 10 MINUTES. HE VERY KINDLY TOLD ME THAT, THIS WAS COMPLETLY OVER HIS HEAD AND I SHOULD GO BACK TO MY PRIMARY DOCTOR. WHEN I ASKED FOR TETRICYCLINE, AS IT HAS WORKED IN THE PAST HE TOLD ME THAT I SHOULD ASK MY PRIMARY DOCTOR. WHEN I AM NOT WORKING, I AM NOT MAKING MONEY. I AM A STRONG LADY, HOWEVER AFTER HE WISHED ME A GOOD WEEKEND AND LEFT, I CRIED. I AM NOT A CRIER. WHERE DOES ONE TURN TO NOW? RIGHT AFTER THIS EPISODE, I FOUND THIS SITE. AND I WOULD LIKE TO THANK THE PERSON WHO HAS MADE THIS SITE, "THANK YOU"

I DO NOT KNOW WHERE TO GO? I NEED TO CHANGE MY PRIMARY DOCTOR, SHE IS AT A LOSS. I AM THINKING ABOUT WRITING THE DERMATOLOGY CLINIC AT STANFORD UNIVERSITY. I AM FULLY AWARE THAT THERE IS NO CURE, AS OF YET. BUT I AM LOOKING FOR A DOCTOR WHO IS AT LEAST IS AWARE OF THIS SKIN ISSUE.

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1 Comment

Reply KELLY
9:55 PM on January 25, 2013 
WOW~JUST WOW~ I HAVE JUST STARTED TO READ THE POSTS IN THE FORUM~ AND QUITE FRANKLY I FEEL BLESSED. TWISTED TO FEEL COMFORT IN THE FACT THAT THEY ARE MANY OTHERS OUT THERE WITH THIS NIGHTMARE.