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