WELL...IT'S BEEN A PRETTY TRYING WEEK SO FAR...I AM STILL TRYING TO OBTAIN MY CONSULT NOTES FROM 9 WEEKS AGO. WITHOUT THESE, MY HANDS ARE TIED IN MAKING FOLLOW UP APPOINTMENTS WITH MY PHYSICIANS HERE IN SC. I HAVE BEEN IN A GOOD AMOUNT OF PAIN LATELY...AND HAVE TAKEN OUT THE TRAMADOL TO TRY SOME...BUT FOR ANYONE WHO KNOWS ME WELL..I WILL FIGHT BEFORE I TAKE ANYTHING THAT MAY HAVE WEIRD SIDE EFFECTS OR MAKE ME FEEL "OUT OF IT"...I REFUSED PAIN MEDS AFTER MY C-SECTION..UNTIL A DAY LATER..AND I WOULD ONLY TAKE IBUPROFEN....TYLENOL IS JUST NOT WORKING FOR THIS PAIN.... NEVER DOES...JUST TAKES A SLIGHT EDGE OF FOR A FEW HOURS. I HATE EVEN TAKING TYLENOL, AND PROBABLY WILL HAVE TO COME UP WITH A DIFFERENT GAME PLAN FOR PAIN MANAGEMENT B/C FDA IS NOW SUGGESTING LOWERING THE DOSE OF THE ACETAMINOPHEN IN TYLENOL. WELL THAT'S NICE OF THEM..DONTCHYA THINK? MY LIVER THANKS THEM AS WELL...ALL HUNCHED OVER AND POISONED.!!
SOMETIMES IF MY PAIN IS BAD...I WILL TAKE A HOT BATH...I USUALLY HOLD OUT AND DO THIS AT NIGHT, ESPECIALLY WHEN THE LITTLE ONE IS SLEEPING...BUT MY SISTER CAME OVER THE OTHER DAY..AND I WAS HAVING A REAL HARD TIME, AND I GOT TO RELAX AND JUST LET THE HEAT HELP FOR ABOUT 20 MINS. IT HELPED AND WAS NICE. THE PAIN I HAVE BEEN FEELING LATELY IS THE FACE AND NECK AND PAIN IN BASE OF HEAD..AND JUST OVERALL UPPER BODY PAIN. BURNING PAIN. SINCE I UNDERSTAND THE PHYSIOLOGICAL REASON WHY I FEEL THIS PAIN, I GUESS IT MAKES IT A LITTLE BETTER, THAN WONDERING "WHAT THE HELL"?! IT'S ALSO NICE TO GET MASSAGES WHEN NEEDED B/C IT DOES HELP ALSO. MY POOR HUSBAND DOESN'T TOTALLY AGREE, BUT WHATEVER HE DOES HELPS. IT'S REALLY HARD TO GO THROUGH YOUR BAD DAYS, BUT THEY GET BETTER AND BETTER AND YOU HAVE TO KNOW YOU ARE NOT ALONE. I AM LUCKY TO HAVE GOOD SUPPORT AND ESPECIALLY MY LITTLE ONE. HE KEEPS ME GOING AND PUSHES ME AND EVEN WHEN I AM HAVING A "BAD" DAY...HIS SMILE AND LAUGH..WARM ME UP. SO IF YOU ARE HAVING A BAD DAY, OR WEEK..TRY TO KEEP YOUR CHIN UP....AND KNOW YOU ARE NOT ALONE.
Tuesday, June 30, 2009
Tuesday, June 16, 2009
OPENING
WELL,
WELCOME TO MY BLOG.....I HAVE NEVER DONE THIS BEFORE, SO BE PATIENT WITH ME WHILE I GET THE HANG OF THINGS. HOPEFULLY IN ABOUT A YEAR I'LL BE AN EXPERT. WELL YOU KNOW WHAT THIS BLOG IS ABOUT AND I REALLY HOPE I GIVE PEOPLE INSIGHT AS TO WHAT IT MEANS TO BE IN MY BODY. YOU MAY HAVE IT YOURSELF..NOT EVEN KNOW IT, YOU MAY HAVE A LOVED ONE WITH ONE OR MORE OF MY DISORDERS, OR MAYBE YOU JUST WANT TO EDUCATE YOURSELF....WELL YOU ARE SO WELCOME HERE IN MY BLOG LIVINGROOM. YOU'LL SEE I WILL HAVE MY GOOD DAYS, MY BAD, AND IT'S ALL PART OF THIS EXPERIENCE.
AS YOU KNOW I DO HAVE SYRINGOMYELIA, CHIARI MALFORMATON AND EHLER'S DANLOS SYNDROME. HERE ARE THE OTHER CONDITIONS I HAVE AS WELL: DEGENERATIVE DISC DISEASE(LUMBAR), SPINAL DYSRAPHISM (A FORM OF SPINAL BIFIDA), AND CRANIAL SETTLING. CAN'T WAIT TO SEE WHAT I'M LIKE AT 60..HAHA..
AS IT STANDS RIGHT NOW....I AM AWAITING MY CONSULATION REPORT FROM THE CHIARI INSTITUTE, WHICH WAS 7 WEEKS AGO. MY HANDS ARE TIED WITH SEEING ANY FOLLOW UP PHYSICIANS AT THIS TIME. I DO HAVE AN EXTREMELY IMPORTANT APPOINTMENT WITH DR. FRANCOMANO IN SEPTEMBER FOR THE EDS. SHE IS SUPPOSE TO BE THE BEST IF NOT ONE OF THE BEST, AND KNOWS THE LINK BETWEEN CHIARI AND EDS, AND IS FAMILIAR WITH SM. SO UNTIL THEN I AM TRYING TO MANAGE THE PAIN AND JUST GET THROUGH EACH DAY AS NORMAL AS POSSIBLE.
SO THAT'S RIGHT NOW....LATER
WELCOME TO MY BLOG.....I HAVE NEVER DONE THIS BEFORE, SO BE PATIENT WITH ME WHILE I GET THE HANG OF THINGS. HOPEFULLY IN ABOUT A YEAR I'LL BE AN EXPERT. WELL YOU KNOW WHAT THIS BLOG IS ABOUT AND I REALLY HOPE I GIVE PEOPLE INSIGHT AS TO WHAT IT MEANS TO BE IN MY BODY. YOU MAY HAVE IT YOURSELF..NOT EVEN KNOW IT, YOU MAY HAVE A LOVED ONE WITH ONE OR MORE OF MY DISORDERS, OR MAYBE YOU JUST WANT TO EDUCATE YOURSELF....WELL YOU ARE SO WELCOME HERE IN MY BLOG LIVINGROOM. YOU'LL SEE I WILL HAVE MY GOOD DAYS, MY BAD, AND IT'S ALL PART OF THIS EXPERIENCE.
AS YOU KNOW I DO HAVE SYRINGOMYELIA, CHIARI MALFORMATON AND EHLER'S DANLOS SYNDROME. HERE ARE THE OTHER CONDITIONS I HAVE AS WELL: DEGENERATIVE DISC DISEASE(LUMBAR), SPINAL DYSRAPHISM (A FORM OF SPINAL BIFIDA), AND CRANIAL SETTLING. CAN'T WAIT TO SEE WHAT I'M LIKE AT 60..HAHA..
AS IT STANDS RIGHT NOW....I AM AWAITING MY CONSULATION REPORT FROM THE CHIARI INSTITUTE, WHICH WAS 7 WEEKS AGO. MY HANDS ARE TIED WITH SEEING ANY FOLLOW UP PHYSICIANS AT THIS TIME. I DO HAVE AN EXTREMELY IMPORTANT APPOINTMENT WITH DR. FRANCOMANO IN SEPTEMBER FOR THE EDS. SHE IS SUPPOSE TO BE THE BEST IF NOT ONE OF THE BEST, AND KNOWS THE LINK BETWEEN CHIARI AND EDS, AND IS FAMILIAR WITH SM. SO UNTIL THEN I AM TRYING TO MANAGE THE PAIN AND JUST GET THROUGH EACH DAY AS NORMAL AS POSSIBLE.
SO THAT'S RIGHT NOW....LATER
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