Welcome to My Historical MS Updates

10/16/08-
MY, OH MY, HOW TIME DOES FLY. I'VE BEEN, RELATIVELY, RELAPSE FREE. THAT'S NOT TO SAY THAT MS HAS LEFT...IT JUST HASN'T REARED IT'S UGLY HEAD, OUTWARDLY. ALTHOUGH, I HAVE BEEN USING A CANE, CONSISTANTLY, SINCE 10/2007 DUE TO THE VERY STRONG "SUGGESTION" OF MY MS NURSE. EVEN IF I MAY NOT BE ON ANY OF THE APPROVED THERAPIES, I KNOW IT'S POSSIBLE FOR NEW LESIONS TO BE APPEARING. OF COURSE TO KNOW FOR SURE & HOW MUCH, I'D HAVE TO ENDURE AN UPDATED MRI...OOOWEEE-HOW FUN!
ANYWAY, LET'S KEEP HOPING THAT I'LL JUST CONTINUE AS WELL AS I HAVE, FROM NOW, ON. WORKS FOR ME. TTFN ;o)

8/1/07-
OK, YOU CAN UNCROSS THOSE FINGERS, NOW. ;o) SO MUCH FOR BETASERON BEING ANY BETTER. I HAD TO STOP, DUE TO IT CAUSING MORE PROBLEMS. YEAH, LIKE I NEEDED MORE TO DEAL WITH. I STARTED OUT ON LOWER DOSES (TITRATION), BUT I WOULD HAVE BURNING-PAINFUL INJECTIONS, BRUISED/PAINFUL/RED INJECTIONS SITES, RAISED BODY TEMPERATURES (THYROID), INCREASED WEIGHT ISSUES, ETC. THAT WAS EVEN WHILE TRYING TO LOSE WEIGHT & I HADN'T EVEN GOTTEN TO THE FULL DOSAGE, YET. NATURALLY, I HAD TO PUT A STOP TO IT ALL. I WAS MORE MISERABLE THAN USUAL. UGH! :O( I REALLY TRIED TO GIVE IT A CHANCE. I EVEN TOLERATED IT UNTIL I'D GOTTEN TO THE FULL DOSE. I JUST COULDN'T DO IT ANY LONGER. I KNOW I'M PRETTY WIMPY, BUT ENOUGH WAS ENOUGH. AS I SAID, IT WAS MISERABLE & IT WAS MAKING MY HUBBY VERY UNHAPPY, AS WELL. AS FOR WHAT I'LL DO NOW? I'VE INFORMED MY NEURO/THE MS CARE CENTER NURSE THAT I'M JUST GONNA RIDE IT OUT, FOR NOW. THEY'VE PUT ME ON A LIST, FOR POTENTIAL MS TRIALS THAT WOULD NEED TO INCLUDE THE SECONDARY PROGRESSIVE FORM OF MS. UNTIL THEN, I'LL JUST HOPE FOR THE BEST.

3/21/07-
HERE'S MY LATEST "MEDICAL" UPDATE. ;o) I HAD MY GALLBLADDER REMOVED, THIS PAST DECEMBER. WHAT A WAY TO SPEND THE HOLIDAYS, HUH? IT WAS PRETTY PAINFUL, BUT GLAD IT'S DONE & NO MORE GALLSTONES.
WENT TO MY NEURO, TODAY. HE'S CHANGING ME TO BETASERON, FROM THE REBIF. I'VE BEEN HAVING SOME, CONSISTANTLY, HIGH LIVER FUNCTION #'s. AS WELL AS, CONTINUED INJECTION SITE ISSUES, ESPECIALLY BURNING. WE'RE HOPING THAT THE LOWER ACID, IN BETASERON, WILL BE MORE TOLERABLE. UNFORTUNATELY, IT'S STILL A INJECTION. :o( I KNOW I'D SURE BE HAPPY, IF THERE WAS SOMETHING AVAILABLE IN PATCH FORM. ANYBODY ELSE, OUT THERE, w/ME? ANYWAY, A B.E.T.A. NURSE IS SUPPOSED TO GET IN CONTACT w/ME, SOON. THEN, I'LL GIVE BETASERON A CHANCE & WE'LL SEE WHAT HAPPENS. NOT TOO MANY OTHER OPTIONS WILL BE LEFT. SO, CROSS YOUR FINGERS, FOR ME.

7/3/06-
AS OF THIS PAST JUNE-2006, I HAVE BEEN ON REBIF A YEAR. I'VE REALLY BEEN TRYING TO TOLERATE IT, BUT I STILL DON'T LIKE THOSE NEEDLES. :-( ALSO, I BECAME A EBAY SELLER. IT'S NOT GONNA MAKE ME RICH, BUT IT SURE HAS BEEN INTERESTING. SINCE I DON'T GET AROUND/OUT ALOT, IT'S AN IDEAL WAY TO KEEP ME BUSY. I MUST SAY, THAT IT'S AMAZING AT THE THINGS YOU'LL FIND, ON EBAY. I CAN JUST LIST WHAT I WANT TO SELL, GET MOST SHIPPING SUPPLIES-FREE-(USPS.COM), PRINT POSTAGE/SHIPPING LABELS FROM MY COMPUTER & SCHEDULE PICK-UP, RIGHT FROM MY DOOR, IF IT WON'T FIT IN MAILBOX. IT'S SO SIMPLE. IT'S A GREAT WAY TO GET RID OF THINGS YOU MAY ALREADY HAVE, THAT YOU NO LONGER WANT. YOU CAN ALSO FIND STUFF @ YARD SALES THAT MAY SURPRISE YOU.

1/8/2002-
HAPPY NEW YEAR, FOLKS! I HOPE YOUR NEW YEAR IS STARTING OUT, BETTER, THAN THE OLD ONE. MINE, SURE HASN'T. I HATE TO REPORT THAT I'VE HAD A SERIOUS RELAPSE, AS OF THE SUNDAY BEFORE THANKSGIVING. IT HAS BEEN WORSE THAN MY PREVIOUS ONE, SPRING 2000. MY HUBBY MISSED, NEARLY, A WEEK OF WORK, SO HE COULD TAKE CARE OF ME. HE WAS SOOO SCARED, TOO. SINCE THIS HAS BEEN THE CASE, I'M NO LONGER TAKING AVONEX. I'D DISCUSSED IT W/MY NEURO & IT WAS DECIDED THAT THERE IS NO SENSE TAKING A DRUG THAT, OBVIOUSLY, DID NOT DO WHAT IT WAS SUPPOSED TO. NOW, IT'S JUST A MATTER OF TREATING MY SYMPTOMS & WAITING. OH, I DO GET SO FRUSTRATED. IF ALL THAT WASN'T ENOUGH, I FIND OUT I'LL HAVE TO FIND A NEW NEURO...HIS OFFICE WON'T BE A PROVIDER ON MY INSURANCE, AFTER THE NEW YEAR. FUN-FUN, HUH?!
MY NEXT OBJECTIVE, IS TO FOLLOW-UP W/MY PSYCHIATRIST. I DON'T THINK THOSE MEDS ARE WORKING ANYMORE, EITHER. AS FOR OTHER MORE PERSONAL (FEMALE) ABNORMALTIES GO, I'LL BE FOLLOWING UP, THERE, AS WELL. MS CAN SURE REEK HAVOK ON YOUR SYSTEM. IT GETS OLD, VERY QUICK! LET'S HOPE MY NEXT UPDATE WILL BE A BETTER ONE.

11/1/2001-
WELL, WELL. I MANAGED TO UPDATE, A BIT, SOONER. I'M SURE GLAD IT'S STARTED COOLING OFF. WHEW! STILL TAKING THE AVONEX, BUT HAVE BEEN NOTICING SOME MORE SYMPTOMS, SINCE LAST UPDATE. THE FATIGUE HAS BEEN, TERRIBLE. BEEN HAVING MORE "PINS/NEEDLES" SENSATIONS. BALANCE HAS BEEN MORE "OFF BALANCE". (LOL) ALL-IN-ALL, I'M NOT ANY WHERE NEAR AS BAD AS, SPRING OF 2000. THAT'S SAYING ALOT. LET'S JUST PRAY THAT IT WON'T, EITHER. MY HUBBY HAS BEEN HAVING ALOT OF HEALTH PROBLEMS, LATELY. SO, THE BETTER I CAN BE, THE BETTER I CAN TRY TO HELP HIM. LORD KNOWS HE'S BEEN A LIFE SAVER, FOR ME.
AH, YES, AS THE HOLIDAYS DRAW NEARER, I MAY NOT GET BACK UNTIL AFTER THE NEW YEAR. THEREFORE, I'LL SEND YOU MY BEST WISHES FOR A SAFE & WONDERFUL HOLIDAY SEASON, NOW.
TAKE CARE/GOD BLESS.

9/4/2001-
THE AVONEX SURE SEEMS TO BE DOING WHAT IT'S SUPPOSED TO. I'VE ONLY HAD A FEW MINOR THINGS, ESPECIALLY BALANCE, TO CREEP UP. NO REAL BIG SURPRISE. AS LONG AS IT KEEPS IT, AT BAY, AS MUCH AS POSSIBLE, THAT'S REALLY HELPING ALOT. THE HEAT, HERE IN FL, HAS BEEN THE BIGGEST PROBLEM. NOT MUCH OF A SURPRISE THERE, EITHER.
I'VE BEEN GETTING QUITE A FEW PEOPLE READING THIS, THAT HAVE SENT ME MESSAGES THRU THE "HUMAN CLICK" LINK. I HAVE BEEN SOOO DELIGHTED AT ALL THE WONDERFUL WORDS OF PRAISE, ENCOURAGEMENT, ETC. I GUESS I'VE BEEN DOING A GOOD THING, HUH? MANY THX TO ALL THAT READ, EVEN THO THEY MAY NOT RESPOND. KEEP UP THE FAITH & BE POSITIVE. TA-TA 4 NOW!

6/12/2001-
UH-OH. I'M WAY OVERDUE, YET, AGAIN. I DON'T HAVE MUCH OF AN EXCUSE, EXCEPT, THE USUAL. (LOL) THEREFORE, I'LL NOT BORE U. ANYWAY, I'D BEEN DOING "GOOD", UP UNTIL AROUND, FEB. WE STARTED FEARING ANOTHER RELASPE, SO I CHANGED MY NEURO & WAS ABLE TO GET STARTED ON AVONEX. IT REALLY SEEMS TO HAVE KEPT A TOTAL RELAPSE, AT BAY. LET'S KEEP OUR FINGERS CROSSED. THANKFULLY, I'D CHANGED TO MY HUBBY'S INSURANCE, THRU HIS EMPLOYER. THEY COVER THE AVONEX & THERE'S NO MINIMUM DRUG LIMIT. IT'S REALLY GREAT, SINCE IT'D COST $828.00/MO, OTHERWISE. I, ONLY, HAVE TO PAY THE $5 CO-PAY. I'VE HAD A FEW MINOR SIDE EFFECTS & MISUNDERSTANDING OF THE PROPER MIXING & ADMINISTRATION. ONCE I NOTIFIED AVONEX, THEY WERE ABLE TO SEND OUT A PROPERLY TRAINED NURSE, TO GET US BACK ON THE RIGHT TRACK, AT NO CHARGE. SHE REALLY HELPED, ALOT. MY HUBBY IS THE ONE THAT GIVES ME THE INJECTIONS & HE FEELS MORE AT EASE, NOW. HE HAS BEEN SUCH A GOD SEND. SINCE THE LORD SAW FIT TO LET HIM BE IN MY LIFE, I HOPE HE DOESN'T NEED TO TAKE HIM AWAY FROM ME, ANY TIME SOON. I'D BE SOOOO LOST WITHOUT HIM. JUST REMEMBER TO COUNT YOUR BLESSINGS, NO MATTER HOW DIFFICULT THINGS MAY BE. I KNOW THEY COULD BE MUCH WORSE, DESPITE HOW DIFFICULT THINGS MAY SEEM AT THE TIME. TRY & BE AS POSITIVE, AS POSSIBLE. THIS MAY SEEM LIKE AN EASY THING TO SAY, BUT YOU REALLY NEED TO TRY. I AM FULLY AWARE OF HOW OVERWHELMING MS CAN BE FOR EVERYONE, NOT JUST FOR THE ONES THAT HAVE MS.
I REALLY HOPE MY PERSONAL EXPERIENCES THAT I SHARE, HERE, WILL BE HELPFUL TO ALL THAT TAKE THE TIME TO READ. TAKE CARE, ALL. UNTIL, NEXT TIME. (SOONER, THAN LATER. MAYBE. ;-)

11/08/2000-
WELL, IT LOOKS LIKE IT TOOK ME ALOT LONGER TO GET BACK TO THIS, AFTER ALL. SORRY.
ANYWAY, I'VE STILL BEEN DOING PRETTY GOOD. I'VE NOT HAD TO USE MY SCOOTER, OR ANY OTHER AIDS, SINCE THE FIRST PART OF SEPTEMBER. THE WEATHER HAS EVEN BEEN SO NICE, THAT WE HAVEN'T HAD TO USE OUR A/C, IN OVER A MONTH. THEREFORE, YOU MUST KNOW IT'S BEEN MUCH COOLER.
I'VE BEEN ABLE TO GO FISHING, WHEN IT'S BEEN POSSIBLE. OTHERWISE, I SURF THE 'NET, ALOT. I'VE REALLY BEEN ENJOYING MY COMPUTER. NOW, THAT I'VE BEEN WORKING MORE ON MY WEB PAGES, IT'S BEEN SO MUCH EASIER. IT STILL TAKES ALOT OF TIME, THO. I DO TRY TO DO THEM, AS MUCH AS MY EYES, FINGERS, BRAIN, ETC., WILL LET ME. CERTAIN SYMPTOMS ARE ALWAYS, EVER PRESENT. IMAGINE THAT! (LOL)
TIME SURE FLYS, DOESN'T IT. IT'LL SOON BE THANKSGIVING, THEN CHRISTMAS. I GUESS I BETTER START DOING SOME SHOPPING (ON INTERNET), REAL SOON. SOME OF THE BEST SITES I'VE FOUND ARE-www.amazon.com & www.overstock.com- THESE SITES HAVE SOME GREAT DEALS, FOR ALMOST ANYTHING. I'VE REALLY BEEN PLEASED. SPEAKING OF WHICH, MAYBE I SHOULD GO THERE, NOW. HOW 'BOUT YOU?
IF I DON'T GET BACK HERE BEFORE THE HOLIDAYS ARE OVER, I WOULD LIKE TO WISH EVERYONE A SAFE & WONDERFUL HOLIDAY SEASON. TAKE CARE.

8/21/2000-
I KNOW, I KNOW. I TRIED TO GET THIS UP, SOONER. I AM DOING MUCH BETTER. I'M WALKING UNAIDED. ;-) YIPPEE! AIN'T IT GREAT?! I DO STILL NEED TO LIMIT MYSELF, SO I DON'T GET OVERLY FATIGUED. OF COURSE, JUST THE HEAT ALONE WILL WIPE ME OUT. THEREFORE, I STAY INSIDE WHERE IT'S COOL. MY A/C & I, ARE GREAT PALS. (LOL) EVEN IF I HAVE SEVERAL ANNOYING SYMPTOMS, IT'S NOTHING COMPARED TO A FEW MONTHS AGO. LET'S HOPE I'LL STAY THIS WAY FROM NOW, ON. I'M HOPEFUL, BUT ALSO REALISTIC.
UNTIL NEXT TIME. OH, WAIT! I ALMOST FORGOT TO MENTION THAT I'D GOTTEN A COMPUTER. IT'S A GATEWAY PERFORMANCE 800. DON'T WORRY WEBTVers, I WILL STILL CONSIDER U WHILE UPDATING MY PAGES. I'LL NEVER FORGET MY WEBTV. EVEN IF USING A COMPUTER, IS AMAZING. TTFN!

6/20/2000-
YES, I KNOW IT'S BEEN AWHILE SINCE MY LAST UPDATE. I RECEIVED THE 5-DAY INFUSION. AFTER ABOUT A WEEK, I DID START TO RECOVER, A LITTLE BIT. WE DID GET THE 3-WHEEL SCOOTER. (NO HELP FROM INSURANCE FOR IT OR TO GO TO THE MS CLINIC.) SO, I WON'T BE GOING THERE UNTIL INSURANCE GETS SET UP. THE MRIs SHOWED NEW LESIONS. BIG SURPRISE, HUH? THANKFULLY, I'VE BEEN ABLE TO WALK, SOME, WITH HELP FROM SOMEONE OR BY HUGGING THE WALLS. I DO USE THE SCOOTER IF I'M GONNA BE SOMEWHERE THAT REQUIRES MUCH WALKING. THE HEAT & FATIGUE ARE ALWAYS A FACTOR. WELL, I HOPE MY NEXT UPDATE WILL NOT TAKE SO LONG. BUT, SOMETIMES I JUST DON'T HAVE THE ENERGY.

4/14/2000-
WELL, I'VE BEEN WHEELCHAIR BOUND SINCE 4/3/2000. I'D BEEN ATTENDING OUT-PATIENT PT, BUT MY PT SAID I WAS DOING SO BADLY, THAT SHE RECOMMENDED IN-PATIENT REHAB AT A HOSPITAL THAT IS NEXT DOOR TO A MS CLINIC. OF COURSE, THE HOSPITAL ISN'T LOCAL, EITHER. MY NEURO HAS POSTPONED THAT, UNTIL AFTER I'VE FINISHED A 5-DAY TREATMENT OF SOLU-MEDROL. I JUST HAD MY 3rd INJECTION, THIS MORNING. SO FAR, THERE'S NO DIFFERENCE. ACTUALLY, I THINK IT MAY BE INTENSIFYING MY SYMPTOMS... TEMPORARILY, I HOPE. ALSO, MY NEURO PRESCRIBED A SCOOTER. UNFORTUNATELY, MY INSURANCE DOESN'T CO-OPERATE. SO, IT LOOKS LIKE WE'LL HAVE TO COUGH UP, TO GET IT, OURSELVES. I SHOULD HAVE IT, TODAY OR TOMORROW. ONE CAN ONLY HOPE. (LOL) I HAD A SERIES OF MRIs DONE, YESTERDAY. BOY, WAS THAT AN AWFUL 2hrs. UGH! :-(
THIS ABOUT DOES IT, FOR NOW. AS IF THIS WASN'T ENUF!

4/1/2000-
I WENT TO MY NEURO, AGAIN, ON MON. 3/20. NOW, HE SAYS I'M CHRONIC PROGRESSIVE. I STARTED PT, TODAY. I SURE HOPE IT'LL HELP. I'VE BEEN HAVING ALOT OF SYMPTOMS, SINCE THIS PAST FRIDAY. MY LEGS FEEL LIKE THEY WEIGH A TON. PLUS, I'VE BEEN FALLING DOWN, MORE. BUT, I'LL STILL FIGURE OUT A WAY TO CATCH FISH. ><)))'>

3/27/2000-
I FINALLY MADE THE REMOVEABLE WHEELCHR COVER. SOMETHING WAS WRONG w/MY MAMA's SEWING MACHINE, SO I HAD TO BORROW ONE. SHE SHOWED ME HOW TO OPERATE IT, THEN I WAS ON MY OWN. IT MAY NOT BE PERFECT, BUT I MADE IT. EVEN THO IT WAS DONE OVER A FEW DAYS, IT WAS REALLY ONLY ABOUT 10hrs. NOT BAD, FOR A BEGINNER, HUH? ;-) THE MAIN THING IS, THAT IT DOES WHAT I WANTED IT TO. MATTER OF FACT, I WAS SO INTO IT, THAT I MADE A POUCH THAT HANGS DOWN THE BACK. I'VE EVEN HAD SEVERAL PEOPLE TELL ME THAT I SHOULD TRY TO MAKE/SELL THEM. HOW 'BOUT THAT?!
MS MAY INTERFERE w/ALOT OF THINGS, BUT I'M AN ANGLER GAL & IT'S GONNA HAVE TO GET ALOT WORSE TO KEEP ME FROM FISHING. ;o) I GREW UP FISHING, IN FRESHWATER, ONLY. BUT, MY (CURRENT) HUBBY, BRAD, HAS TURNED ME ONTO SALTWATER. HE, NOW, SAYS HE'S CREATED A MONSTER. (LOL!) LET ME TELL YOU, LORD WILLING, ALL THEM FISHES BETTER, "LOOK OUT!". OF COURSE, I HAVE TO BE CAREFUL TO NOT GET OVERHEATED. HA! SOUND FAMILIAR? (LOL) LIVING IN FLORIDA ALL MY LIFE, YOU'D THINK I'D BE MORE AWARE. SOMETIMES, YOU CAN BE FEELING WELL ENOUGH, THAT IT JUST CREEPS UP ON YOU. ENJOYING LIFE IN THE SOUTH CAN BE REALLY FUN, AS LONG AS YOU BE CAREFUL. HA! FAMOUS LAST WORDS.
UPON MY LAST, SEVERAL, VISITS TO MY NEUROLOGIST, HE'S TRIED ME ON PREDNISONE (w/NO LUCK), SUGGESTED PT (PHYSICAL THERAPY), SENT ME FOR BLOOD TESTS (B12 & FOLATE - WHICH CAME BACK AT "NORMAL" LEVELS), & HAS TOLD ME I'M, NOW, STEADILY WORSENING. MAYBE SO, BUT I'M GONNA MAKE THE BEST OF IT. HE EVEN SUGGESTED BETASERON, A WHILE BACK, WHEN I WAS R/R (RELAPSING-REMITTING). EVEN IF I WAS STILL R/R, I'M UNABLE TO TAKE ANY OF THE ABC DRUGS, BECAUSE THE COST IS SO HIGH. HERE, IT COSTS ABOUT $900.00/MO. INSURANCE HAS A $1200.00/YR PRESCRIPTION LIMIT. SO MUCH FOR THAT, HUH? SINCE I DO TAKE MEDS FOR HBP (HIGH BLOOD PRESSURE) & DEPRESSION, IT USES THAT UP. I TAKE AVAPRO-300 mg (HBP) & SERZONE-600mg (DEPRESSION). I TAKE MECLIZINE (ANTI-VERT) FOR MY BOUTS w/VERTIGO, WHEN NECESSARY. I'VE TRIED ALOT OF THE USUAL MEDS, FOR OTHER SYMPTOMS. NOT MANY HAVE HELPED. I GUESS SOMEONE HAS TO BE DIFFICULT. SO, IT'S USUALLY ME. (LOL) ;o)

3/3/2000-
I HAVE A GREAT IDEA FOR A REMOVEABLE COVER (for WHLCHR). I'VE GOT THE MATERIAL & VELCRO. I EVEN HAVE MY MAMA'S OLD SEWING MACHINE. THE ONLY BAD PART IS, I DO NOT KNOW HOW TO SEW. (LOL) OOOOH, IT JUST IRKS ME TO HAVE SUCH A BRILLIANT IDEA, BUT KNOW, NO WAY, TO MAKE IT HAPPEN. OH, SURE. I CAN TRY TO FIND SOMEONE TO HELP ME. I WAS SOOOO HOPING I COULD FIGURE OUT A WAY TO DO IT, ALL BY MYSELF. ANYONE ELSE EVER FEEL THAT WAY?