My PA affects me the most in my Achilles tendons. I've yet to find a doctor
that can tell me what to do about it. I take Metho but it doesn't help my heels.
Anyone else have this problem and if so, how do you treat it? Thanks.
Christine

Shirley Duval <shenry_123@...> wrote:
HI CATHY,
I HAVE NEVER HEARD PA DESCRIBED SO WELL. I HAD TO LAUGH WHEN YOU SAID WHERE IS
WALDO. YOU HAVE A TOUGH JOB. HOW DO YOU DO IT WITH THE PAIN?

I WAS DXD WITH PA ON JULY 1, 1998. I HAD HAD IT FOR YEARS, BUT IT REALLY
EXACERBATED IN MAY OF 98. AFTER BEING DXD I REALIZED DOCS KNEW VERY LITTLE
ABOUT THIS WIERD ARTHRITIS SO I GOT AN INTERNET PLAN AND WENT SEARCHING.
NEEDLESS TO SAY, THERE WAS NOT A LOT OF INFO ON THE NET AT THAT TIME, BUT IN THE
PAST 6 YEARS THE INFO HAS INCREASED BY ABOUT 500 PER CENT. HAVE YOU DONE MUCH
RESEARCH? BEING A NURSE, YOU WILL UNDERSTAND MORE OF WHAT THEY HAVE TO SAY ON
THE DIFFERENT SITES THAN MOST OF US.

WHILE PA MOVES AROUND, IT EVENTUALLY CAN SETTLE IN SOME JOINTS AND JUST HANG ON
THERE FOREVER. MY KNEES AND BACK(PARTICULARLY SACROILIAC) HURT ALL THE TIME
NOW. MY KNEES HAVE SWOLLEN TO THE POINT I HAD TO HAVE THEM DRAINED. HAS
HAPPENED 4 TIMES NOW. HURTS SO BAD YOU DON'T CARE IF THEY HAVE TO STICK A
NEEDLE IN YOUR KNEWW. IT IS LIKE AN IV AS THEY DO NOT LEAVE THE NEEDLE IN.
THEN YOU GET A SHOT OF CORTISONE. IT IS INSTANT RELIEF. STILL SORE, BUT THE
TERRIBLE PAIN IS GONE. I HAVE TAKEN PREDPACKS BEFORE, BUT IT HAS BEEN A LONG
TIME. I LIKE THE IM STEROID SHOT AS THERE IS NOT A LIFETIME NUMBER ON THESE AND
THEY DO HELP. PAIN SO BAD FIRST TIME I GOT THIS SHOT, I DID NOT EVEN FEEL THE
NEEDLE.

DO YOU HAVE A LOT OF PSORIASIS? THE ITCHING DRIVES ME NUTS. SOMETIMES I THINK
IT IS AS BAD IF NOT WORSE THAN THE PAIN. I HAVE WOKEN UP IN THE MORNING WITH
BLOODLY FINGERS FROM WHERE I SCRATCHED IN MY SLEEP. OH SO ATTRACTIVE.

THIS STUFF IS REALLY MORE DANGEROUS THAN DOCS TELL YOU. IT IS SYSTEMIC LIKE
LUPUS AS IT CAN EFFECT OTHER ORGANS. I HAVE IRITIS IN BOTH EYES FROM THE PA.
HAVE HAD IT OFF AND ON FOR ABOUT 7 YEARS. MY SISTER AND NEICE BOTH HAVE IT
ALSO. THEY HAVE PERMANENT DAMAGE IN ONE EYE FROM THE IRITIS-PUPIL NO LONGER
RESPONDS TO LIGHT. MY SISTER IS LEGALLY BLIND IN THAT EYE FROM THE IRITIS. IT
CAN ALSO EFFECT OTHER ORGANS SUCH AS THE HEART. DON'T MEAN TO SCARE YOU, JUST
LETTING YOU KNOW SO YOU CAN PROTECT YOURSELF. WHEN I HAD MY FIRST BOUT WITH
IRITIS I HAD NO PAIN, JUST VERY SENSITIVE TO LIGHT AND ALL OF A SUDDEN I WAS
ACUTELY AWARE I HAD THIS LEFT EYE. ONLY WAY TO EXPLAIN IT. GUESS THIS WAS THE
INFLAMMATION. WHILE I ONLY NOTICES LEFT EYE, I HAD IT IN BOTH EYES. WAS GIVEN
PREDFORTE BY THE OPHTHALMOLOGIST. EVERYONE I KNOW WHO HAS HAD IRITIS HAS HAD
THIS PROTOCOL USED. CHECK IRITIS OUT ON THE INTERNET.

ANOTHER SCAREY THING - SURGERY. I HAD SURGERY FOR A ROUTINE HYSTERECTOMY IN
2003. THIS WAS ON THE 9TH, ON THE 17TH I WAS BACK IN THE ER WAITING TO SEE A
SURGEON AS I HAD GANGRENE AND NECROTIZING FASCIITIS OF THE ABDOMEN AS WELL AS
BEING SEPTIC. SURGEON, WHO IS A FIRST CLASS DOC, TOLD MY HUSBAND HE DID NOT
KNOW IF HE COULD SAVE ME. WELL, OBVIOUSLY HE DID SINCE I AM SENDING YOU THIS
EMAIL. LOST ALL MUSCLE ON RIGHT SIDE OF ABDOMEN. HAD HOME HEALTH CARE WITH
WOUND VAC AS THEY COULD NOT CLOSE THE INCISION. COULD STICK YOUR FIST IN RIGHT
SIDE OF ABDOMEN AND YOUR HAND UP PAST YOUR FINGERS FROM SURGICAL SITE UPWARDS
TOWARDS DIAPHRAGM. ENDED UP WITH HERNIA SIZE OF SOCCOR BALL AND WENT BACK FOR
SURGERY IN JULY OF 04. LEFT ME OPEN AGAIN FOR FEAR OF A REPEAT OF LAST TIME.
HAD DEEP WOUNDS AND ONCE AGAIN I WAS ON THE WOUND VAC. NEEDLESS TO SAY, MY
ABDOMEN IS DEFORMED. THE OB/GYN WHO DID THE HYSTERECTOMY WAS A QUACK. WITH
THE GANGRENE, I SMELLED TERRIBLE AND BROWN PUS OOZED FROM ME.
HE TOOK HIS FINGER AND RIPPED OPEN THE SURGICAL SITE IN HIS OFFICE. KEPT
SCOOPING OUT ALL THIS BROWN NASTY STUFF FROM MY ABDOMEN. GAVE MY HUSBAND NON
STERILE GAUZE AND GLOVES AND TOLD HIM TO SOAK GAUZE WITH PEROXIDE AND PACK ME
WITH THIS. I BECAME PSYCHOTIC DUE TO THE SEPSIS. TALKED CRAZY STUFF. THE NEXT
DAY MY HUSBAND TOOK ME BACK TO THIS QUACK WHO CLEANED THE BROWN STUFF OUT, WROTE
RX FOR ERYTHROMYCIN AND WAS GOING TO SEND ME HOME. THIS WAS A FRIDAY AND I WAS
TO RETURN ON MONDAY. MY HUSBAND PULLED HIM OUT OF THE EXAM ROOM AND TOLD HIM HE
KNEW GANGRENE WHEN HE SAW IT AND SMELLED IT AND I HAD GANGRENE. DOC RELUTANTLY
CALLED OUR FAMILY SURGEON. HAD MY HUSBAND NOT RECOGNIZED WHAT WAS WRONG, I
WOULD HAVE DIED. I WOULD NOT HAVE MADE IT THROUGH THE WEEKEND.

NOW, YOU MIGHT ASK, WHAT DOES THIS HAVE TO DO WITH PSORIASIS. STREP AND OTHER
GERMS, AS I AM SURE YOU KNOW, LIVE ON THE SKIN AND DO US NO HARM. BUT WHAT
HAPPENS WHEN FLAKES GET IN SURGICAL WOUNDS. I AM CONVINCED A PSORIATICS SKIN
IS MORE INVOLVED THAN JUST WHERE THE OBVIOUS PSORIASIS IS. I SAY THIS BECAUSE
IF YOU TAKE AN EMERY BOARD AND RUB IT LIGHTLY ON OTHER PARTS OF YOUR BODY, THE
SKIN FLAKES EASILY. NOT SO ON PEOPLE WHO DO NOT HAVE PSORIASIS. PLUS, WHERE
YOU HAVE WOUNDS OF ANY KIND YOU CAN DEVELOP PSORIASIS. THERE IS A NAME FOR IT
BUT I CAN'T REMEMBER WHAT IT IS. CALLED ________________ PHENOMENON. I GUESS
WHAT I AM SAYING IS TO BE YOUR OWN ADVOCATE IF YOU HAVE SURGERY AND WATCH OUT
FOR NECROTIC TISSUE WHERE THE WOUND IS CLOSED. ONLY ONE AREA WHERE A STAPLE WAS
SHOWED NECROTIC TISSUE. THANK GOD FOR THAT THOUGH. MY HUSBAND SAID WHEN HE
GAVE ME A SHOWER HE PUSHED ON THAT AREA AND BROWN PUS JUST OOZED FROM THERE,
SAID IT WAS LIKE A GEYSER. IT ACTUALLY SHOT A STREAM OUT
MY ABDOMEN WHERE THE ONE STAPLE HAD NOT CLOSED THE INCISION DUE TO THE NECROTIC
TISSUE THERE.

I AM SO LUCKY TO BE ALIVE. I KNEW I WAS IN BAD SHAPE. THE SURGEON DID
EMERGENCY SURGERY ON ME. I CAN REMEMBER BEING ON THE TABLE IN THE OPERATING
ROOM AND ALL I COULD THINK OF WAS MY TWO CHILDREN. I THOUGHT, HOW UNFAIR TO
THEM. THEY ARE ADOPTED FROM RUSSIA. HAD ALREADY LOST ONE SET OF PARENTS, NOW
THEY COULD LOSE THEIR MOTHER. FUNNY HOW I WAS NOT AFRAID TO DIE BUT JUST KEPT
THINKING ABOUT THEM. GOD MUST HAVE LISTENED TO ME. FOR SEVERAL DAYS, THE
SURGEON SAID I WAS NOT OUT OF THE WOODS. THEY BLASTED ME WITH IV ANTIBIOTICS
AND KEPT THE SITE CLEAN WITH A CLOROX SOLUTION. I WENT HOME AFTER A WEEK AND
WAS FOLLOWED BY HOME HEALTH UNTIL THE END OF JUNE. THE WOUND VAC WORKS GREAT.
WITHOUT IT I WOULD HAVE BEEN MONTHS HEALING WITH HOME HEALTH COMING TWICE DAILY
TO CHANGE THE WOUND DRESSING.

I TRIED TO SUE THE SOB BUT GOT NO WHERE AS HE HAD PUT IN HIS NOTES IT WAS HIS
IDEA TO CALL THE SURGEON. EVEN THOUGH I KEPT THE RX FOR ERYTHROMYCIN HE HAD
GIVEN ME THAT DAY WHICH I THOUGHT PROVED HE WAS GOING TO SEND ME HOME. WHY
WOULD YOU GIVE SOMEONE AN ANTIBIOTIC RX IF YOU WERE SENDING THEM TO THE ER TO
SEE A SURGEON AND WHY WOULD YOU PRESCRIBE ERYTHROMYCIN FOR GANGRENE. I HAVE
BEEN THROUGH HELL THE PAST TWO YEARS AND I JUST HAVE TO LIVE WITH IT. NO
COMPENSATION, NO NOTHING. IT IS EXTREMELY HARD TO SUE A DOC IN VA. THE DIMWIT
CLOSED HIS OFFICE IN MAY, 2003 AND TOOK A POSITION WITH THE VETERAN'S HOSPITAL
IN THIS AREA. IS HEAD OF WOMEN'S CARE FOR OUR VETERANS. MAKES ME SICK. THE
ONLY THING I CAN DO IS MAKE A COMPLAINT TO THE VA LICENSING BOARD. HE HAS
ALREADY HAD ONE COMPLAINT WHERE HE WAS SANCTIONED. THERE ARE OTHERS HE MESSED
UP TOO. HOPEFULLY HE WILL LOSE HIS LICENSE. HE WAS ONLY IN VA FOR A YEAR AND
THERE ARE MULTIPLE SUITS AGAINST HIM.

SORRY BOUT THE LONG EMAIL, BUT I THOUGHT YOU MIGHT WANT TO KNOW. THE ONLY WAY
WE CAN PROTECT OURSELVES IS THROUGH KNOWLEDGE. I DON'T HAVE MUCH FAITH IN
DOCTORS ANYMORE. ESPECIALLY SINCE THE NEUROSURGEON WHO HAD PERFORMED SURGERY ON
MY HUSBAND'S NECK TOOK OUT A GOOD DISC AND LEFT THE BAD ONE THERE. HE HAS
PERMANENT NERVE DAMAGE IN BOTH ARMS AND HANDS. COULDN'T SUE HIM EITHER AS HE
LISTED DOUG ON HIS BANKRUPTCY EVEN THOUGH DOUG HAD NEVER BEEN AWARDED ANYTHING.
HAVE BEEN TOLD BY SEVERAL LAWYERS HE COULD NOT DO THIS BUT APPARENTLY OUR LAWYER
THOUGHT HE COULD.

OH WELL, NO WONDER I AM NUTS. GLAD I WAS A CLINICAL THERAPIST SO I RECOGNIZE
THE SIGNS.

HOPE YOU DO WELL WITH WHATEVER TX THEY GIVE YOU. HOPE TO HEAR FROM YOU.

HUGS,
SHIRLEY IN PORTSMOUTH, VA - NEAR VA BEACH

Cathy <tiggertown@...> wrote:

Hi all.
I was diagnosed last year, and have been doing ok till about a month
ago. One day I got very stiff and painful all over, was put on
steroids for a week and did great.
Last night I woke up with arm pain and tonight have severe stiffness
in that hand.
What a weird disease..............kind of like where's
waldo........never know what or where it will pop up.
Look forward to meeting you all here.
I am an RN in gastroenterology.

Cathy





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