HELLO. MY NAME IS TRISH. I AM 32 YRS OLD & HAVE AN ALMOST 10 YEAR OLD SON AND AN ALMOST 8 YEAR OLD DAUGHTER. THEIR FATHER AND I SEPERATED & DIVORCED IN 2004. I AM REMARRIED TO A WONDERFUL MAN. AND OH, YEAH, I HAVE MS--DIAGNOSED IN FEBRUARY OF 2005.
THIS POST IS IN RESPONSE TO A QUESTION I WAS ASKED IN THE MSWORLD CHAT ROOM AT THE BEGINNING OF LAST WEEK. ANOTHER MS SUFFERER ASKED ME WHAT I CONSIDER TO BE A RELAPSE....MY NEUROLOGIST HAS DUBBED MY MS AS "AGGRESSIVE RRMS." I CAN'T EVEN COUNT HOW MANY TIMES I HAVE BEEN TREATED WITH 3-5 DAYS OF IV SOLUMEDROL AND I REALLY REALLY DON'T WANT TO TRY.
THERE IS NO PART OF MY BODY THAT THIS DARN DISEASE HAS LEFT ALONE OVER THE LAST SIX YEARS. I HAVE HAD TO RECOVER THE USE OF MY LEGS & FEELING IN SAID LIMBS...TO SOME EXTENT...MY RIGHT LEG NEVER CAME BACK COMPLETELY AND FEELS LIKE FROSTNIP ALWAYS.
I LOST AND HAD TO RELEARN HOW TO USE BOTH OF MY ARMS & HANDS. TRYING TO WRITE & SIGN A CHECK FOR RENT WITH A HAND FULL OF CURLED AND USELESS CLAWS ISNT MY IDEA OF A FUN TIME.
MY SHORT-TERM MEMORY IS BEYOND HORRIBLE. MY HANDS SHAKE & MY HEAD BOUNCES ON ITS OWN AT TIMES. I HAVE ALMOST COMPLETELY LOST MY VISION TWICE AND I'M SCARED TO BUY GLASSES BECAUSE THEY ARE EXPENSIVE & I DON'T WANT TO HAVE TO REPLACE THEM IN 6 MONTHS.
I WISH I DIDN'T REMEMBER WHAT IT FELT LIKE TO HAVE BALANCE & ENERGY. I HAVE SPENT TIME BEING COMPLETELY INCONINENT AS WELL AS PARTIALLY SO. MOST OF THE TIME I FEEL PHYSICALLY BEAT...NO ENERGY, LEAD-LIMBED...BUT NOT SLEEPY.
THERE HAVE BEEN TIMES WHEN MY LOWER JAW AS WELL AS MY CHEEKS HAVE FELT AS THOUGH THEY'D BEEN DRILLED INTO WITHOUT ANESTHETIC. MANY OF THESE SYMPTOMS ARE TRANSIENT AND DO NOT CONSTITUTE A RELAPSE BY THEMSELVES. ADD ANY OF THEM TOGETHER FOR 3 CONSECUTIVE DAYS & IT MEANS A TRIP TO THE NEUROLOGIST FOR YET ANOTHER ROUND OF STEROIDS.
I SPENT THE FIRST TWO YEARS AFTER MY DIAGNOSIS ON AVONEX (THE FIRST OF WHICH I ALSO WAS GIVEN AN INFUSION EVERY 2 MONTHS OF THE CHEMOTHERAPY DRUG, METHOTREXATE).
AFTER THE SECOND YEAR OF AVONEX MY NEUROLOGIST HADN'T SEEN ENOUGH IMPROVEMENT AND SUGGESTED WE CHANGE TO BETASERON. I TOOK BETASERON FOR 4 YEARS. IT SEEMED THAT MY DISEASE HAD STABILIZED AT 1 RELAPSE EVERY 6-8 MONTHS ... TILL THIS SUMMER.
AT LEAST 3 NEW LESIONS IN MY GREY MATTER...AS OF THE BEGINNING OF JUNE...AND MY NEURO HAS NOW SWITCHED ME TO THE NEW DRUG GILENYA.
I HAVE VERY HIGH HOPES FOR THIS ONE.
TODAY WILL BE THE FIRST DAY OF MY CURRENT ATTEMPT TO GET IN BETTER PHYSICAL SHAPE--NOTHING TOO BIG, JUST GONNA GO FOR A SHORT WALK WITH MY CHILDREN. NOT GONNA GIVE UP...NOT NOW & NOT EVER.
THIS DISEASE JUST FLAT-OUT SUX. WE ALL EXPERIENCE IT DIFFERENTLY & TO DIFFERING DEGREES. SOMETIMES WE GET JUDGED BY OTHERS (FAMILY, FRIENDS, AND STRANGERS) BY WHAT THEY SEE & FAIL TO UNDERSTAND.
WE ALL (EVERYONE, NOT JUST MS SUFFERING PEOPLE) NEED TO REMEMBER THAT WE NEED TO WALK A FEW MILES IN SOMEONE ELSE'S SHOES BEFORE WE MAKE ANY JUDGEMENTS.
I KNOW THAT...BEING YOUNG AND OUTWARDLY APPARENTLY HEALTHY, PEOPLE MAKE CRUEL AND GENERALLY INCORRECT JUDGEMENTS. CAN WE TRY TO NOT DO THE SAME TO EACH OTHER?
CAN WE TRY TO REMEMBER THAT "YOU LOOK SO HEALTHY" AND "WHAT DO YOU CONSIDER A RELAPSE TO BE" ARE JUST TWO VERSIONS OF THE SAME QUESTION AND MANIFEST THE SAME DISBELIEF. BOTH QUESTIONS ARE HURTFUL AND BOTH SAY "I DON'T BELIEVE YOU'RE REALLY SICK."
*** Moderator's note - line spacing added for easier reading. Many members have difficulty reading large blocks of text.
THIS POST IS IN RESPONSE TO A QUESTION I WAS ASKED IN THE MSWORLD CHAT ROOM AT THE BEGINNING OF LAST WEEK. ANOTHER MS SUFFERER ASKED ME WHAT I CONSIDER TO BE A RELAPSE....MY NEUROLOGIST HAS DUBBED MY MS AS "AGGRESSIVE RRMS." I CAN'T EVEN COUNT HOW MANY TIMES I HAVE BEEN TREATED WITH 3-5 DAYS OF IV SOLUMEDROL AND I REALLY REALLY DON'T WANT TO TRY.
THERE IS NO PART OF MY BODY THAT THIS DARN DISEASE HAS LEFT ALONE OVER THE LAST SIX YEARS. I HAVE HAD TO RECOVER THE USE OF MY LEGS & FEELING IN SAID LIMBS...TO SOME EXTENT...MY RIGHT LEG NEVER CAME BACK COMPLETELY AND FEELS LIKE FROSTNIP ALWAYS.
I LOST AND HAD TO RELEARN HOW TO USE BOTH OF MY ARMS & HANDS. TRYING TO WRITE & SIGN A CHECK FOR RENT WITH A HAND FULL OF CURLED AND USELESS CLAWS ISNT MY IDEA OF A FUN TIME.
MY SHORT-TERM MEMORY IS BEYOND HORRIBLE. MY HANDS SHAKE & MY HEAD BOUNCES ON ITS OWN AT TIMES. I HAVE ALMOST COMPLETELY LOST MY VISION TWICE AND I'M SCARED TO BUY GLASSES BECAUSE THEY ARE EXPENSIVE & I DON'T WANT TO HAVE TO REPLACE THEM IN 6 MONTHS.
I WISH I DIDN'T REMEMBER WHAT IT FELT LIKE TO HAVE BALANCE & ENERGY. I HAVE SPENT TIME BEING COMPLETELY INCONINENT AS WELL AS PARTIALLY SO. MOST OF THE TIME I FEEL PHYSICALLY BEAT...NO ENERGY, LEAD-LIMBED...BUT NOT SLEEPY.
THERE HAVE BEEN TIMES WHEN MY LOWER JAW AS WELL AS MY CHEEKS HAVE FELT AS THOUGH THEY'D BEEN DRILLED INTO WITHOUT ANESTHETIC. MANY OF THESE SYMPTOMS ARE TRANSIENT AND DO NOT CONSTITUTE A RELAPSE BY THEMSELVES. ADD ANY OF THEM TOGETHER FOR 3 CONSECUTIVE DAYS & IT MEANS A TRIP TO THE NEUROLOGIST FOR YET ANOTHER ROUND OF STEROIDS.
I SPENT THE FIRST TWO YEARS AFTER MY DIAGNOSIS ON AVONEX (THE FIRST OF WHICH I ALSO WAS GIVEN AN INFUSION EVERY 2 MONTHS OF THE CHEMOTHERAPY DRUG, METHOTREXATE).
AFTER THE SECOND YEAR OF AVONEX MY NEUROLOGIST HADN'T SEEN ENOUGH IMPROVEMENT AND SUGGESTED WE CHANGE TO BETASERON. I TOOK BETASERON FOR 4 YEARS. IT SEEMED THAT MY DISEASE HAD STABILIZED AT 1 RELAPSE EVERY 6-8 MONTHS ... TILL THIS SUMMER.
AT LEAST 3 NEW LESIONS IN MY GREY MATTER...AS OF THE BEGINNING OF JUNE...AND MY NEURO HAS NOW SWITCHED ME TO THE NEW DRUG GILENYA.
I HAVE VERY HIGH HOPES FOR THIS ONE.
TODAY WILL BE THE FIRST DAY OF MY CURRENT ATTEMPT TO GET IN BETTER PHYSICAL SHAPE--NOTHING TOO BIG, JUST GONNA GO FOR A SHORT WALK WITH MY CHILDREN. NOT GONNA GIVE UP...NOT NOW & NOT EVER.
THIS DISEASE JUST FLAT-OUT SUX. WE ALL EXPERIENCE IT DIFFERENTLY & TO DIFFERING DEGREES. SOMETIMES WE GET JUDGED BY OTHERS (FAMILY, FRIENDS, AND STRANGERS) BY WHAT THEY SEE & FAIL TO UNDERSTAND.
WE ALL (EVERYONE, NOT JUST MS SUFFERING PEOPLE) NEED TO REMEMBER THAT WE NEED TO WALK A FEW MILES IN SOMEONE ELSE'S SHOES BEFORE WE MAKE ANY JUDGEMENTS.
I KNOW THAT...BEING YOUNG AND OUTWARDLY APPARENTLY HEALTHY, PEOPLE MAKE CRUEL AND GENERALLY INCORRECT JUDGEMENTS. CAN WE TRY TO NOT DO THE SAME TO EACH OTHER?
CAN WE TRY TO REMEMBER THAT "YOU LOOK SO HEALTHY" AND "WHAT DO YOU CONSIDER A RELAPSE TO BE" ARE JUST TWO VERSIONS OF THE SAME QUESTION AND MANIFEST THE SAME DISBELIEF. BOTH QUESTIONS ARE HURTFUL AND BOTH SAY "I DON'T BELIEVE YOU'RE REALLY SICK."
*** Moderator's note - line spacing added for easier reading. Many members have difficulty reading large blocks of text.
Comment