A.S. Face 0008 : Hedy Francois

MY LIFE WITH “ AS “

I AM A 64 YEAR OLD FEMALE, WHO HAS BEEN DIAGNOSED WITH ANKYLOSING SPONDYLITIS 7 YEARS AGO. WHEN I WAS YOUNGER I HAD SYMPTOMS OF BACK PAINS ETC. ETC. BUT ALWAYS THOUGHT IT WAS JOB RELATED, BEING A NURSE.

WHEN WE LIVED IN EUROPE IN THE 70’S, I HAD UVEITIS, THERE AGAIN I THOUGHT IT WAS BECAUSE WE TRAVELED THE UNDERGROUND IN LONDON AND ALL THE DUST PARTICLES COME IN YOUR EYE AS YOU ASCEND THE ESCALATORS. I ALSO HAD SEVERE SCIATICA.

WHEN WE RETURNED TO THE STATES I HAD TERRIBLE PAINS IN MY COCCYX  AREA, THAT WAS RELIEVED BY COCOA BUTTER SUPPOSITORIES.  ALWAYS THERE WERE BACK PAINS. BUT THE DOCTORS DIDN’T SEE FURTHER NEED OF BLOOD TESTS ETC. TO FIND OUT WHY I HAD BACK PAINS.

I STARTED TO HAVE  A LOT  OF PAINS WHEN I WAS TAKING CARE OF MY ELDERLY PARENTS IN THE LATE 90’S. I SUFFERED FROM TENDONITIS,PAINS IN MY RIGHT ARM AND SHOULDER, BOTH FEET AND TOES WERE IN PAIN. I HAD SURGERY ON MY RIGHT ARM FOR A RIGHT ROTATOR CUFF REPAIR. SURGERIES ON BOTH MY FEET AND TOES AND HEELS IN EARLY 2000.

IN 2004, I BEGAN TO HAVE EXTREME PAIN IN MY HIP JOINTS AND SACRO-ILIAC AREA. I WENT TO A DOCTOR FOR  PAIN MANAGEMENT, AND HAD 2 SPINAL INJECTIONS, BUT AFTER 2-3 MONTHS THE PAINS WOULD RETURN. I FINALLY WENT TO A RHEUMATOLOGIST AND HE AFTER HEARING ALL MY SYMPTOMS HAD BLOOD TESTS DONE, AND ONE OF THEM WAS FOR THE GENE HLA-B27. HE PERSONALLY CALLED ME AT HOME TO TELL ME THE RESULTS OF THE TESTS.

I WAS POSITIVE FOR THE GENE! HE STARTED ME ON BEXTRA, AND THEN OTHER “NSAIDS” THAT I CAN’T RECALL AT THIS MOMENT. I HAD TERRIBLE PAINS JUST BY TOUCHING THE SACRUM AREA.

IN 2005 MY LEFT HIP JOINT WAS BOTHERING ME VERY MUCH , RESULTING IN A LEFT TOTAL HIP REPLACEMENT.  THE DOCTORS WERE AFRAID OF IT FUSING BEFORE THEY COULD GIVE ME A NEW HIP JOINT. NOW MY RIGHT HIP NEEDS TO BE REPLACED AS WELL.

I  HAVE PAINS IN MY NECK AND SHOULDERS, AND WEAR A NECK BRACE TO BED BECAUSE MY NECK VERTEBRAE ARE BEING NOW AFFECTED BY ‘AS’.  I HAVE ‘CRACKLING POPPING’ SOUNDS IN MY NECK AND BACK.

LATELY MY PAINS HAVE BEEN EXCRUCIATING 24/7. HAVE BEEN ON MOBIC. HAVE TRIED THE HUMIRA INJECTIONS IN ’08-’09, BUT DUE TO MY IMMUNE SYSTEM BEING LOWERED SO MUCH, I CAUGHT EVERY COLD THAT TURNS INTO PNEUMONIA.

NOW I AM ON CELEBREX TWICE A DAY AND ALSO HAVE THE ZYNEX “TENS UNIT” THAT I USE FOR PAIN MANAGEMENT. I TRIED TAKING TRAMADOL, BUT DID NOT FEEL BETTER AFTER TAKING IT. SO I AM NOT ON ANY PAIN MEDS. EXCEPT FOR TYLENOL  ARTHRITIS.

MY LIFE HAS CHANGED DRASTICALLY, I CAN’T DO THE THINGS I USED TO DO. I CAN’T DO ANY GARDENING, CAN’T BEND DOWN ALL THE WAY. I CAN’T GO ON WALKS, WALK IN THE MALL TOO LONG. I STILL DO ALL MY OWN HOUSEHOLD CHORES, BUT IT TAKES ME LONGER TO ACCOMPLISH THEM.

I WAKE UP IN THE MORNING FEELING LIKE A TRUCK RAN OVER ME.  I AM STIFF, BUT I THINK  OF ALL THE PEOPLE IN THE WORLD WORSE OFF THAN ME. I GET UP WITH A HALF-SMILE ON MY FACE TO TACKLE  ANOTHER DAY IN MY “AS” LIFE.

MY HUSBAND HAS BEEN MY ROCK, AND HE FULLY UNDERSTANDS WHAT “AS” IS. I HAVE TAKEN HIM WITH ME TO MEETINGS ETC. SO THAT HE IS AWARE THERE ARE PATIENTS OUT THERE THAT HAVE THE SAME ILLNESS.

MY FATHER DIDN’T CARRY THE GENE, HE HAD ARTHRITIS IN ALL HIS JOINTS. MY MOM PASSED AWAY BEFORE I KNEW I HAD “AS”, SO IT’S TOO LATE TO KNOW WHETHER SHE HAD IT, SHE NEVER COMPLAINED ABOUT BACK PAINS ETC.

I  HOPE AND PRAY THAT OUR DAUGHTER AND GRANDDAUGHTER WON’T HAVE THIS TERRIBLE ILLNESS.

FOR US ANKYLOSING SPONDYLITIS PATIENTS THERE IS ONLY “HOPE” THAT ONE DAY SOON THE MEDICAL WORLD WILL DISCOVER A CURE FOR “AS”. “HOPE” THAT DOCTOR’S CAN TREAT AND DIAGNOSE PATIENTS IN TIME, AND NOT MISDIAGNOSED. THE ANKYLOSING SPONDYLITIS ASSOCIATION OF AMERICA IS DOING THEIR UTMOST BEST TO MAKE THE WORLD AWARE OF THIS DISEASE, BUT WITHOUT MEDIA EXPOSURE, DOCTOR’S AWARENESS OF THIS DISEASE, AND SUBSEQUENT LACK OF FUNDING, WE WON’T GET VERY FAR.

LET US HOPE FOR A CURE, ALL WE HAVE IS HOPE!!

“ HE WHO HAS HEALTH HAS HOPE: AND HE WHO HAS HOPE HAS EVERYTHING.”

THANK YOU, HEDY FRANCOIS

MISSION VIEJO, CALIFORNIA UNITED STATES OF AMERICA


8 Responses to “A.S. Face 0008 : Hedy Francois”

  1. Thank you Hedy for your story yes I agree we do have to make people and the medical profession more aware of AS That’s why this site is so good true facts from people who know.

  2. Dear Hedy,
    Thank you so much for sharing your story with us. I agree and my hope is that this site does help bring awareness to making a difference in our medical society, and in our own lives as well. Thank you again.

  3. Dear Hedy, I know that you have that disease, you told me a while ago, and I have never heard it before . The way you described ‘AS’ is very very painful and I can imagine that it takes its toll on you and your family.
    You have a husband who loves you very much and is able to help you wherever he can. Your granddaughter is the Apple of Your Eye, and she brings you joy and happiness, and life is brighter than. God gives you comfort through your daughter and granddaughter.
    I hope and pray that an early diagnosis will be available for future AS patients. Love, Melie

    Melie Rietveldt said this on October 11, 2011 at 3:36 am

  4. wow, your story was so sad, im glad you wake up with a smile on your face because that now makes me stronger. I know there are people worse off than i am but like you my life has changed so much. I have a husband that supports me so much i love him to death. I am 52 and have been misdiagnosed for 18 years, always went to the doctor for things but he always said nothing was wrong with me. Now that i know i am happier, love cathy MJ

  5. I have read everything you posted about AS and am still learning, yet also still confused as to what causes it, how does it start, and other questions that I am sure you also wonder. I love you very much and am saddened that I never knew this before. You always seem so strong and happy…well that is because you are. Your Spirit does not have AS and that is the Tante Hedy I know. You are a loving, strong, beautiful woman who has been in my life for as long as I can remember. I am not that far away and please know that you can call on me anytime. Love to you!

  6. Thank you Hedy and I am so glad that you have family support…Empathy is a word that is highly undervalued. Bless you…
    Gillian AS face #0645

  7. I am also a nurse
    Your case sounds just like mine…great fun we are having
    I have not had the hip replacements yet, but still in my 50’s, they
    are working their way to that point. Swimming saves me thus far!
    Best wishes

  8. great story, all the very best.

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