LIVING WITH MS

I WAS OUT BY 11AM

2010-01-08T15:00:00.002-05:00

YEP, AND WENT TO GET MY MEDS THEN CAME HOME BY 1PM. DOING QUITE WELL. A LITTLE DISCOMFORT AROUND THE INSISSION AND TRYING TO GET USE TO THIS REMOTE I HAVE TO CARRY AND THE WIRE THAT IS COMING OUT OF MY BACK. HOPEFULLY THIS WILL WORK AND I'LL BE BACK IN SURGERY IN 2 WEEKS TO HAVE THE FINAL IMPLANT. LETS HOPE!!!!!

SURGERY

2010-01-07T15:06:00.001-05:00

ITS TOMORROW - THE FIRST OF 2. THE NEXT ONE IS SCHEDULED FOR THE 22ND. I NEED TO BE AT THE HOSPITAL BY 6 AM. WISH ME LUCK!

PRE OP TESTING GONE WRONG

2010-01-06T19:56:00.002-05:00

NURSE AT THE DOC'S OFFICE CALLED ME YESTERDAY AND TOLD ME I NEEDED TO GO TO THE HOSPITAL FOR PRE OP TESTING AND THAT IT WAS SCHEDULED FOR TODAY AT 1:30PM. WELL, HUBBY AND I WENT AND WHEN WE GOT THERE WE WERE TOLD THAT THE DOC NEVER ORDERED TESTS. THE NURSE EVEN CALLED THE DOC'S FFICE TO SEE WHY WE WERE TOLD TO COME IN. WELL, SHE COULDN'T FIND ANYTHING OUT SO WE TOOK A TRIP FOR NOTHING. BUMMER.

SNOW GO AWAY!!!!!!

2010-01-03T16:48:00.001-05:00

THIS WEATHER SUCKS! FRIENDS HAVING DIFFICULTY MAKING IT OVER AS PLANNED. RESCHEDULED 3xS! ALSO, I CANT GET OUT OF THE HOUSE, WHICH REALLY SUCKS!

dr appt

2010-01-01T07:18:00.002-05:00

SAW DR. ROTH YESTEERDAY RE: SURGERY. IT WAS JUST A QUICK APPT TO DOUBLE CHECK THE NOTES AND INFO. I STILL NEED TO GO FOR PRE OP AND THEN SURGERY FRIDAY. AFTERWARDS, I'LL HAVE A FEW, AND I STRESS A FEW, MORE APPTS. HUBBY WILL NEED TO TAKE MORE TIME OFF.

BABY ITS COLD OUTSIDE!!!!!!!!

2009-12-29T17:53:00.002-05:00

i WAS GOING TO GO OUT TO GET MY HAIR CUT BUT WITH THIS COLD WIND THAT IS RAPPING OUTSIDE, I'LL STAY RIGHT HERE. THE COLD BOTHERS MY TONE AND CAUSES MY MUSCLES TO TIGHTEN WHICH IS PAINFUL.
tHE WEATHERMAN IS PREDICTING A NORTHEASTER FOR THIS WEEKEND, WHICH IS BUMMING HUBBY OUT. BOTH HE AND I HAVE PLAYS WITH FRIENDS. THE WAY I SEE IT, IF THINGS NEED TO GET RESCHEDULED, THEY GET RESCHEDULED. AND WITH THIS BEING MAINE, I'LL WAIT UNTIL THURSDAY TO CHANGE ANY PLANS. THE PREDICTIONS COULD CHANGE BY THEN. NO REASON TO STRESS YOURSELF OUT.

CHRISTMAS AGAIN

2009-12-27T17:23:00.001-05:00

IN LAWS CAME BY TODAY FOR A BELATED CHRISTMAS, WHICH WAS NICE. wE WERE BETTER ABLE TO FOCUS ON OUR INTIMATE FAMILY MOMENT THIS WAY. FAMILY IS SO PRECIOUS!!!!!!!!!

CHRISTMAS

2009-12-25T16:39:00.002-05:00

WHAT A NICE RESTFUL DAY. DAUGHTER DID ALL THE BAKING YESTERDAY, AND WE ALL DID THE WRAPPING. THIS WAS THE FIRST CHRISTMAS EVE WE COULD BE IN BED BY 8PM. IN MORN WE ALL GOT UP AROUND 7AM, AND THE DAY WAS FULL OF NAPPING, VISITING RELATIVES AND WATCHING TV. NOW THATS WAT I CALL A RESTFUL DAY.

NO REACTION

2009-12-23T15:17:00.002-05:00

THERE INITALLY WAS A BURNING WHEN THE NEEDLE WENT IN, BUT THE NEXT DAY I WAS FINE

SHOT TIME

2009-12-22T08:27:00.002-05:00

HAD THE H1N1 VAC SHOT YESTERDAY. IT BURNED GOING IN, BUT I HAVEN'T FELT ANY PAINS SINCE. TAKING MEDS THAT EFFECT MY IMMUNE SYSTM IS TRICKY FOR ME. NEITHER DOCS NOR MYSELF KNOW WHAT TO EXPECT AND WHAT USUALLY IS A NORMAL REACTION FOR SOMEONE ELSE IS LESS THAN TYPICAL FOR ME. WISH ME WELL.

GREAT TIME IN NH

2009-12-20T09:42:00.002-05:00

WE WENT SHOPPING AT THE FOX RUN MALL IN NH YESTERDAY. DAUGHTERS B DAY IS TOMORROW AND WHEN ASKED WHERE SHE WANTED TO GO TO CELEBRATE, SHE CHOSE THIS PLACE. WE ALL ENJOYED OURSELVES WITH SHOPPING AND EATTING. IT FELT SO GOOD TO GET OUT AND WITHOUT MS TROUBLES.

OUT LAST NIGHT

2009-12-17T15:24:00.001-05:00

WENT OUT WITH HUBBY O DUNKIN DONUTS FOR A COFFEE. WHERE DID THE HEAT GO? MY LEGS DIDN'T WANT TO STAY BENT - WENT STRAIGHT OUT. HUBBY FOUGHT WITH THEM SO I COULD GET INTO THE BUILDING. MY LIFE WITH MS.

TIRED TYPE OF DAY

2009-12-14T18:16:00.001-05:00

I COULD'VE SLEPT ALL DAY. SOME IT WAS THE MEDS, SOME THE COLD. I'LL PERK UP SOMETIME, I HOPE.

BABY ITS COLD OUTSIDE

2009-12-12T09:51:00.002-05:00

WENT TO A PARTY LAST NIGHT THEN SHOPPING AND FROZEN MY BUM OFF. hOW DID IT GET SO COLD SO FAST. HAVING A HARD TIME WARMING UP, AND COLD STIFFENS MY MUSCLES. I GUESS I'LL JUST BUNDLE UP.

SNOW, SNOW GO AWAY

2009-12-09T14:57:00.002-05:00

OK, I LIKE TO LOOK AT THE WHITE STUFF, BUT ENOUGH IS ENOUGH! WE HAVE ABOUT 5 PLUS INCHES HERE. SNOW MKES IT DIFF FOR ME TO GET OUT. NO, I DON'T HAVE ANY PLANS FOR TODAY. I DO FOR FRIDAY NIGHT. BY THEN THE COLD WILL HAVE SETTLED IN, STORM OUT. SO I WILL BE ABLE TO GET OUT WITH HELP. HUBBY WILL NEED TO PUSH MY CHAIR OUT TO THE CAR. CAN'T DO IT EASILY BE MYSELF. BOO!!!!!!!!

PCA IS BACK!!

2009-12-07T14:59:00.002-05:00

sHE STILL HAS A SLIGHT COLD, SO WE TOOK IT PRETTY EASY TODAY. hOPEFULLY SHE'LL FEEL WELL ENOUGH TOMORROW TO COME TO WORK. gOOLD INCREASED MY HOURS TO 29 A WEEK, SO WE FIGURED OUT A SCHEDULE. I'M SO EXCITED!!!!!!!

PCA SICK

2009-12-05T09:31:00.002-05:00

POOR GAL - SHE HAS FINALLY SUCCUMBED. ALL WEEK SHE HAS BEEN FIGHTING THIS COLD. NOW IT HAS WON. SHE COULDN'T BE HERE YESTERDAY, BUT THE AGENCY DID FIND SOMEONE FOR ME AND IT WORKED OUT GREAT. TODAY SSHE IS OUT AGAIN, BUT FAMILY IS HERE SO i DON'T NEED ANYONE ELSE. OH WELL.

NURSE VISIT

2009-12-02T15:14:00.002-05:00

WENT WELL EVERYONE. MY PCA HOURS HAVE BEEN INCREASED TO 29 A WEEK, PLUS AN ADDITIONAL 5 HOURS A WEEK FOR CARETAKER RESPITE. tHESE HOURS ARE FOR HUBBY TO USE AS HE PLEASES, SO HE CAN GO OUT BY HIMSELF AND I WOULD HAVE MY OWN BABYSITTER (HAHAHA). THE HOME HEALTH AGENCY WILL LET ME KEEP MY GIRL FOR THESE HOURS WHICH IS GREAT!!!!!! nOW I HAVE TO FIGURE OUT WHAT MY COPAY WILL INCREASE TO.

TOMORROW

2009-12-01T16:48:00.001-05:00

TOMORROW I HAVE A GOULD ASSESSMENT TO CHECK ON MY HOME BASED NEEDS AND TO SEE IF I QUALIFY FOR MORE PCA HOURS. WISH ME LUCK!

TIGHTNESS

2009-11-28T11:23:00.001-05:00

FOR THE PAST 2 DAYS I HAVE BEEN EXPERIENCING TIGHTNESS IN THE MUSCLES OF MY HANDS AND ARMS. HAVE GONE BACK TO DOING SOME STRETCHES TO SEE IF THAT WILL HELP. USE IT OR LOSE IT, RIGHT?

NEW SYMPTOM

2009-11-26T16:40:00.001-05:00

AS OF LATE, I'VE BEEN HAVING DIFF. WITH WORD FINDING. I WILL GET THE CORRECT WORD AFTER A FEW TRIES. IT'S MORE FRUSTRATING FOR FAMILY MEMBERS THAN ME. JUST SOMETHING ELSE TO MONITOR.

STILL NOTHING

2009-11-24T15:57:00.002-05:00

I CALL THE VENDOR. IT SEEMS MY WHEELCHAIR ISN'T THE ONLY ONE AIRTRAN BROKE. THEY ALSO BROKE SOMEONE'S MOTORIZED CHAIR. THE VENDOR WILL COME TAKE A LOOK AT MINE AT THE SAME TIME AS THEY DELIVER MY NEW LIFT, WHICH HASN'T BEEN ORDERED YET. THEY NEED TO FIND A PRICE FOR IT.
I HAVE YET ANOTHER UTI. 9TH ONE SINCE JULY 4TH. I HOPE THE OPERATION HELPS SO I DON'T HAVE TO KEEP GOING THROUGH THIS.

IT'S DONE FOR ANOTHER YEAR

2009-11-22T09:14:00.002-05:00

HAD THE LAST CRAFT FAIR YESTERDAY - NOT ALOT O PEOPLE THERE. MAYBE THE BEAUTIFUL WEATHER KEPT PEOPLE AWAY. I DON'T BLAME THEM. WHAT WE HAVE LEFT(ABOUT 8 NECKLACES, 3 BARETTES, AND 8 ZUCCHINI RELISH) HUBBY TAKING TO WORK. THE GIRLS THERE LOVE IT WHEN HE BRINGS STUFF IN FOR THEM TO HAVE. LAST YEAR I MADE ABOUT 15 SCARFS HE TOOK. HARDLY ANYONE THERE HAS EXTRA MONEY AND ARE JUST GETTING BY. ANYWAY WE CAN HELP WE WILL.

ANOTHER DAY

2009-11-20T19:57:00.002-05:00

TOMORROW WILL BE BUSY. MY LAST CRAFT FAIR. THE END OF THE ROAD ANOTHER YEAR. BEEN FIGHTING A CAST OF DIARRHEA THIS WEEK - YUCK!!!!!! THE VENDOR WHO GOT THE LIFT THROUGH IS WORKING ON GETTING ANOTHER ONE THAT WILL HOEFULLY MET MY NEEDS BETTER. I'LL KEEP YOU UP TO DATE ON HOW THAT GOES. ALSO NO ONE HAS COME TO FIT THE WHEELCHAIR YET. ANOTHER BATTLE BREWS.

NOT MUCH

2009-11-17T13:23:00.000-05:00

NOT MUCH GOING ON HERE.

OPPS! MADE A MISTAKE!

2009-11-14T20:18:00.002-05:00

YESTERDAY WAS fRIDAY THE 13TH - NOT BLACK FRIDAY!
TODAY WE HAD ANOTHER CRAFT FAIR. THIS ONE DIDN'T GO WELL - NOT ALOT OF CUSTOMERS AND THEY HAD SOME KIDS PERFORMING. THE PARENTS BLOCKED SOME OF THE VENDORS TABLES. TICKED ME OFF!!!! CUSTOMERS, THOSE WHO WERE THERE, COULDN'T GET TO OUR WARES. WELL WE DO HAVE ONE MORE FAIR TO GO.

HAPPY BLACK FRIDAY

2009-11-13T16:00:00.001-05:00

THINGS RUNNING SOMEWHAT SMOOTHLY HERE. LEGS ARE WEICKED STIFF THROUGHOUT THE DAY, BUT HEAH, IT COULD BE WORSE!

PCP & NURSE

2009-11-10T18:56:00.002-05:00

PCP - I MET WITH MY PCP YESTERDAY: SHE AGREED THAT MY MOTORIZED WHEELCHAIR IS NOT WORKING FOR MY BODY TOO WELL. SHE WILL BE TIRING TO CONNECT WITH MY NEUROLOGIST TO SEE WHAT OPTIONS ARE OUT THERE FOR ME.

NURSE - TODAY MY PCP WAS OUT SICK, SO THE OWNER OF THE HOME HEALTH AGENCY CAME BY. SHE AGREED THE LIFT I HAVE DOES NOT MEET MY NEEDS AND IS TRYING TO COME UP WIGH A BETTER OPTION. SHE TIRED TO HELP ME TRANSFER WITH ANOTHER PCP TO NO LUCK. THEY HAD TO CALL IN ANOTHER PERSON. DIDN'T I FEEL LIKE A BEACHED WHALE! HOPEFULLY MY GIRL WILL BE BACK TOMORROW!

I GOT A CALL TODAY FROM AIRTRAN - I GOT A "I'M SORRY" IN REGARDS TO MY BROKEN WHEELCHAIR, AND THEY ARE GOING TO BE PAYING TO HAVE IT REPAIRED. YES!!!!!!!

OH WHAT A BEAUTIFUL DAY!

2009-11-08T11:24:00.002-05:00

WENT OUTSIDE TO SIT IN THE SUNNY - IT'S AROUND 60!!!! HUBBY AND KIDS CUTTING AND STACKING WOOD. WISH I COULD HELP. BEING OUTSIDE EVEN JUST FOR 1/2 HOUR AND DOING NOTHING TIRES ME OUT. CAME IN TO NAP.
YESTERDAY HAD ANOTHER CRAFT FAIR. SLOW START, BUT IT PICKED UP. ALMOST SOLD OUT OF JAM AND BRACELETS. NEED TO MAKE MORE BRACELETS - CAN'T MAKE MORE JAMS TIL NEXT SEASON.

NEURO APPT WENT WELL

2009-11-05T19:23:00.002-05:00

NO NEW ISSUES, NO NEW MEDS, NO CHANGES. YEPEE!
hUBBY AND I DECIDED I NEED TO CALL THE HOME HEALTH AGENCY RE: THE LIFT. WE BOTH THINK IT IS TOO BIG AND IT IS NOT ABLE TO GO HIGH ENOUGH TO HELP ME INTO BED. EVEN MY PCA ISN'T HAPPY ABOUT IT.
HUBBY HAD ABAD DAY, REALLY WEEK, AT WORK. THE AGENCY IS CHANGING POLICIES AND BENEFITS. CO-WORKERS AREN'T HAPPY, THE MOOD IS A BUMMER, IT'S JUST NOT A NICE PLACE TO GO TO. HOPEFULLY THAT WILL CHANGE SOON.

LIFT IS HERE

2009-11-04T13:42:00.002-05:00

AND IT'S HUGE! I DON'T KNOW WHAT THE HOME HEALTH AGENCY WAS THINKING. AND MY PCA THINKS THIS LIFT IS A WASTE OF SPACE/TIME. I'M OPEN TO SUGGESTIONS AND GIVING IT A SHOT. I JUST WONDER WHAT MY HUBBY WILL THINK WHEN HE SEES IT!

OK

2009-11-02T18:40:00.000-05:00

ALL'S WELL FOR NOW!

AND THE RESULTS ARE....

2009-10-29T18:06:00.002-04:00

I WENT FOR THE FOLLOW UP APPT WITH THE URO DOC. THE TESTED PROVED THAT MY BLADDER IS NOT EMPTYING OUT COMPLETELY. THE CHOICES ARE...1) TAKE MORE MEDS, 2) CATH, OR 3) SURGERY. WE WENT WITH #3, WHICH IS SCHEDULED FOR JAN. THE DOC WILL BE PUTTING A STIMULATOR IN MY BACK, THAT WILL BE ATTACHED TO A CONTROLLOR OUTSIDE THE BODY. THERE WILL BE A WIRE THAT WILL COME OUT OF MY BACK THAT ATTACHES TO THE CONTROLLOR. I WILL NEED TO DISCONNECT THE CONTROLLOR FOR SHOWERS. WHAT THIS EQUIPMENT WILL ALLOW ME TO DO IS STIMULATE MY BLADDER TO EMPTY COMPLETELY. THE WHOLE PROCEDURE IS DONE IN 2 SEPARATE SURGERIES, SCHEDULED 2 WEEKS APART. NOW WITH THIS STUFF, I WILL NOT BE ABLE TO HAVE MRI'S, NOR GO THROUGH METAL DETECTORS (I WILL CARRY A CARD THAT EXPLAINS THE MECHANISM I HAVE). ALSO, THE BATTERY LIFE ON THE BOX THAT WILL BE IN MY BACK IS 5-7 YEARS. NONE OF THE INCISSIONS WILL BE LONGER THAN 4CM AND THESE SURGERIES WILL BE DONE IN DAY SURGERY. HOPEFULLY, THIS WILL WORK.

FEELING A MIXED BAG

2009-10-28T16:05:00.002-04:00

MY REG GIRL OUT TODAY, SO I HAD A SUB. SHR WAS TOO WEAK TO HELP ME WITH TRANSFERS AND DIDN'T EVEN OBSERVE MY TRANSFERS. I WAS PROUD OF MYSELF, THOUGH, BECAUSE I DID THEM ALL BY MYSELF UNTIL AROUND 3 WHEN I BECAME TOO TIRED. THEN HUBBY HAD TO COME HOME EARLY TO HELP. I WISH HE DIDN'T NEED TO.

STILL WAITING

2009-10-27T15:24:00.001-04:00

YUP - FOR PCP TO WRITE THE SCRIPTS FOR THE LIFT AND WHEELCHAIR STUFF. DOESN'T IT SEEM LIKE WE SPEND 1/2 OUR LIVES WAITING FOR STUFF/PEOPLE?

BUSY PHONE DAY

2009-10-23T15:49:00.001-04:00

ON THE PHONE MOST OF THE DAY. I'M GETTING A LIFT TO HELP WITH TRANSFERS, SET UP TRANSPORTATION FOR A MEDICAL APPT., AND TRACKING DOWN OTHER EQUIPMENT. BUSY, BUT HEY, IT'S DONE!

URO TEST IN THE BAG

2009-10-21T13:06:00.002-04:00

HAD THE TEST YESTERDAY AND HAVE A FOLLOW-UP APPT NEXT WEEK. THE TEST WASN'T ALL THAT BAD, BUT I'M GLAD IT'S DONE!
RECEIVED AN INTERESTING PIECE OF MAIL - MEDICARE WILL NOT PAY FOR MY STEROID TREATMENT, BUT MAINECARE PAID 100%. WHY WASN'T I TOLD ABOUT THIS BEFORE THE TREATMENT? GOOD THING MAINECARE STEPPED UP OR I WOULD BE FACED WITH A $1200 PLUS BILL. NOW WOULDN'T THAT BE A KICKER!?!

FAIR WENT WELL

2009-10-18T17:58:00.002-04:00

WE DID THE BEST WE HAVE EVER DONE AT THIS FAIR. WE SOLD NEARLY HALF OUR JAMS, RELISHES, AND JEWELRY! AWESOME!!!! BUT BELIEVE ME, IT WAS SO COLD TODAY. ALL OF US WERE BUNDLED UP IN JACKETS AND BLANKETS. WELL, IT WAS WORTH IT!!!!
MY POOR NURSE HAD TO COME BY LAST NIGHT. MY IV LINE BLEW THE VEIN, SO SHE HAD TO RESET IT. SINCE TAKING CHEMO AND OTHER IV MEDS, MY VEINS DON'T LIKE NEEDLES. THEY ROLL. LAST NIGHT WAS JUST THE SME. IT TOOK 6 TRIES, BUT FINALLY SHE GOT A WINNER. IT'S NOT HER FAULT. JUST THE VEINS BEING STUBBORN.
MY STREGTH FEELS GOOD, BUT BECAUSE WE WERE AT THIS FAIR FOR 2 DAYS, I HAVEN'Y BEEN ABLE TO TEST IT OUT. AND NOW I HAVE HAD TO STOP MY ANTI-PEE PILLS TIL AFTER THE URODYNAMIC STUDY ON TUESDAY. HOPEFULLY THE STEROIDS WON'T CAUSE A PROBLEM WITH THE TEST. WITHOUT TAKING THE MED, I WILL BE INN THE BATHROOM ALOT! HOPEFULLY WE'LL GET SLEEP TONIGHT. WISH US WELL!

A MS WEEK

2009-10-16T20:50:00.002-04:00

SORRY I HAVEN'T WRITTEN. IT'S BEEN A BAD WEEK. THE NEUROLOGIST PUT ME ON A THREE DAY SUPPLY OF IV SOLU-MEDROL, A STEROID DUE TO INCREASED WEAKNESS. THE NURSE CAME YESTERDAY TO RUN THE LINE AND NOW I MIX THE MEDS A ADMIT IT MYSELF. I FEEL LIKE A NURSE! MY TRANSFERS WE ALOT MORE DIFF TO DO BUT TODAY I WAS ABLE TO DO 3 ALL BY MYSELF! AN IMPROVEMENT.
I"M WORKING ON TRYING TO EITHER GET A WHEELCHAIR EVAL, OR A NEW CHAIR. I REQUESTEDA DOC ORDER FROM THE PCP AND AN ORDER FOR A NEW PT CONSULT.
MY TRAVEL AGENT HAS SUGGESTED I WRITE A LETTER TO AIRTRANS ABOUT THE AWLFUL EXPERIENCE I HAD IN BALTIMORE. SHE WANTS TO TAKE THIS LETTER AND ARGUE A POINT WITH THE AIRLINE. LET HER HAVE FUN, I SAY.
WE WILL BE AT THE LOCAL COMMUNITY FAIR FOR THE NEXT TWO DAYS SELLING OUR WARES. THE CHILDREN WANTED THEIR OWN TABLE TO SHARE. HELENA WANTS TO DO LEAF RUBBING FOR FREE, WHILE TRYING TO COLLECT DONATIONS FOR THE SPCA. MIKE MADE COOKIES AND PUMPKIN BROWNIES TO SELL. THEY CAME UP WITH THESE IDEAS ALL BY THEMSELVES. SMARTS KIDS. WISH US ALL LUCK!

I'M BACK!!!!!!!! pART2

2009-10-12T19:46:00.002-04:00

SO, WE HAD A GREAT TIME, BUT IT WAS BUSY!!! WE WEREN'T PREPARED FOR ALL THE LINES. I WAS PREPARED, HOWEVER, FOR SOME OF THE LONG WAITS I HAD WHILE HUBBY AND THE KIDS WENT ON RIDES. DISNEY IS WONDERFUL IN TELLING FOLKS IN THEIR BROCHURES WHICH RIDES ARE WHEELCHAIR ACCESSIBLES AND ON WHICH ONES YOU'D NEED TO TRANSFER. THAT LEAVES DECISSIONS UP TO THE GUEST. YOU ARE THE ONE IN CONTROL.

THE FOOD WAS GOOD IN SOME LOCATIONS AND IFFY IN OTHERS. IT JUST DEPENDS UPON YOUR TASTE. WE ATE IN FRENCH, MONROCCAN, ITALIAN, CARIBEAN, ETC RESTAURANTS. PEOPLE MADE SPACE FOR THE WHEELCHAIR, SO THERE WASN'T ANY PROBLEM THERE. AT ONE PLACE I EVEN SAW THE CHEF COME OUT TO TALK TO A FAMILY ABOUT ONE OF THEIR MEMBER'S FOOD ALLEGY AND CAME UP WITH AN ALTERNATIVE FOR THEM. NOW THAT'S SERVICE!

ON A DIFFERENT NOTE, I WAS NOTIFIED TODAY THAT I HAVE BEEN APPROVED FOR LONGTERM MEDICAID, WHICH MEANS MY PCA HOURS WILL BE INCREASED TO 3 HOURS A DAY FOR 6 DAYS A WEEK. MY CO-PAY HAS GONE UP TO $188.00 A MONTH, BUT IT IS WELL WORTH IT AND WE ARE SO EXCITED!

I"M BACK!!!!!!!!!

2009-10-12T10:50:00.002-04:00

YEP, WE ARE HERE IN THE GREAT COLD STATE OF MAINE. AND TALK ABOUT A TEMP WARP - THERE WAS A 40 PLUS DEGREE CHANGE FROM THE TIME WE GOT ON THE PLANE AND THEN OFF. AT LEAST THE FLIGHT HOME WENT BETTER THAN THEN FLIGHT THERE. WELL, THE FLYING WAS GREAT, BUT THE WAY THE ATTENDANTS TRANSFERED ME WAS AWFUL! I HAD TO BE TRANSFERED INTO A TINY AISLE CHAIR THAT TO LOOK AT IT NO ONE WOULD HAVE THOUGHT I COULD FIT ONTO IT - I MEAN IT WAS/IS SO SMALL. ANYWAY, IN BALTIMORE, THERE WAS JUST A LADY TO DO ALL THE WORK, LIKE YEAH, SHE COULD PICK ME UP! ANYWAY, SHE ARGUED WITH MY HUSBAND, BANGED MY KNEES INTO A WALL, AND BANGED MY HEAD AND SHOULDERS INTO THE SEATS. SHE ALSO DIDN'T BUCKEL ME IN (EVERYONE ELSE USED A 5 POINT HARNESS.
THE TEMPS WERE OVER 90 EVERYDAY. TALKED ABOUTA HEAT WAVE! BUT I KEPT COOL IN AIR CONDITIONED STORES AND ROOMS. I ALSO HAVE A FAN THAT HAS A WATER BOTTLE ATTACHED. COOL.
WE WERE BUSY EVERYDAY AND HAD FUN!

OFF FOR VACA

2009-10-03T16:10:00.001-04:00

I WILL BE AWAY FOR A WEEK TO DISNEY IN FLORIDA. TALK TO YOU WHEN I GET BACK!!!!!!!!!!

LOVE MY NEW GIRL!!!!!

2009-10-01T18:29:00.001-04:00

SHE IS TOTALLY AWESOME! THE ONLY PROB IS SHE LIVES OVER AN HOUR AWAY AND DOESN'T WANT TO WORK UNLESS SHE IS IN TOWN FOR SCHOOL. SHE IS STUDYING TO BE A PCA. WE'LL WORK IT OUT.

VACA AWAITS!!!!!!!

2009-09-29T15:55:00.001-04:00

HUBBY AND KIDS ARE COUNTING DOWN THE DAYS!!!!!

MOREW LEG TROUBLES

2009-09-28T15:56:00.002-04:00

THROUGHOUT THE WEEKEND I'VE HAD TROUBLES WITH MY LEGS. THEY HAVE BEEN TIGHT AND CRAMPED UP. STRETCHING DIDN'T HELP AT ALL. I PUT A CALL INTO MY NEUROLOGIST, BUT NO CALL BACK AS OF YET.
THE WHEELCHAIR REPAIRMAN CAME TODAY AND PUT NEW TIRES AND NEW ARMRESTS ON. LOOKS AND FEELS GOOD, UNTIL I GET THE BILL.

FIRST APPT

2009-09-25T15:13:00.002-04:00

I MET WITH DR. ROTH YESTERDAY AND MY URODYNAMIC STUDY WILL BE ON 10/20 WITH THE FOLLOW UP ON 10/29. THE TEST WILL TAKE 1-2 HOURS WITH LOTS OF TUBES AND SENSORS. IT SOUNDS LIKE A BIG PAIN AND VERY UNCOMFORTABLE. HE SAID THAT NOT ALL OF MY URINE TESTS CAME BACK POSITIVE FOR A UTI - SO WHY DID THE DOCS PUT ME ON CIPRO EACH TIME? CONFUSING!

BAD, BAD MS DAYS

2009-09-24T11:09:00.003-04:00

YUP - THAT'S WHAT'S HAPPENING HERE AND DON'T I FEEL AWLFUL ABOUT IT! HUBBY HAS HAD TO LEAVE WORK EARLY 2 DAYS IN A ROW! JUST TO HELP ME WITH TRANSFERS. THESE INFECTIONS HAVE TAKEN A TOLL ON MY STRENGTH. I DID CALL THE HOME HELP AGENCY TO CHANGE MY HOURS TO THE MORNING TO SEE IF THAT WILL HELP. AT LEAST SOMEONE WOULD BE HERE TO HELP WITH THE TRANSFERS. THE AGENCY SAID THEY WOULD SEE WHAT THEY CAN DO LET'S HOPE!

WHAT A MEASURING PAIN!!!!!!!

2009-09-21T10:48:00.002-04:00

ALL WEEKEND I HAD TO NOTE WHAT I DRANK, HOW MUCH I DRANK, WHEN I PEED, AND HOW MUCH. AT THE END I JUST GUESSED THER AMOUNT - YOU GET A HANG OF IT. NEXT STEP - THURSDAY ASPPT. HOPEFULLY I'LL COME HOME WITH SOME ANSWERS AND NOT MORE TESTS.

ANOTHER INFECTION & MORE CHANGES!!!!!

2009-09-18T21:19:00.002-04:00

YUP, NEUROLOGIST CALLED AND PUT ME BACK ON CIPRO. I HATE THAT STUFF! I HAVE MY FIRST APPT AT THE BLADDER CENTER THURS., BUT BEFORE THEN, I HAVE TO LOG IN A URINE DIARY HOW OFTEN I GO, WHEN I GO, AND HOW MUCH I GO. WHAT A PAIN!!!
ANOTHER NEW GAL CAME TODAY YET AGAIN. THIS IS GETTING TIRESOME AND I HEAR YET ANOTHER NEW GAL WILL BE HERE TUES. AM I A TEST DUMMY? THAT'S WHAT I FELL LIKE. OH WELL. INTO EVERY LIFE A LITTLE NEWNESS ARRIVES. IT'S LIKE EVERYDAY IS A SURPRISE AS TO WHO WILL BE HERE. I GUESS THAT'S THE NATURE OF HEALTH CARE. AT LEAST SOMEONE COMES BY. FOR THAT I AM GRATEFUL.

ANOTHER NEW GAL

2009-09-17T10:48:00.000-04:00

ANOTHER NEW PCA CAME YESTERDAY AND THIS ONE IS A KEEPER. I HOPE SHE STAYS!

MORE TESTS

2009-09-15T15:54:00.002-04:00

NEUROLOGIST FINALLY GOT BACK TO ME AND ORDERED ANOTHER URINALYSIS. I FEEL LIKE I SHOULD HAVE A BATHROOM AT THE LAB NAMED AFTER ME.
MY CNA DIDN'T SHOW UP TODAY. I CALLED THE AGENCY AND THEY SENT SOMEONE ELSE FOR AN HOUR. GOOD HELP IS SO HARD TO FIND.

PHONE CALL CENTRAL

2009-09-14T16:22:00.002-04:00

HAD TO CALL THE NEUROLOGIST RE: WEEKEND SYMPTOMS. STILL WAITING FOR A CALL BACK AT 4:25PM. THAT'S NORMAL FOR HIM - HE'S SO BUSY.
CALLED STATE CASEWORKER RE: THE APP. FORM FOR THE LONG TERM MAINECARE. ONCE I RETURN ALL THE NEEDED PAPERWORK, WE'LL SCHEDULE A TELEPHONE INTERVIEW. CALLED ALLSTATE INSURANCE FOR A COPY OF MY LIFE INSURANCE POLICY FOR THE STATE APP. THE STATE ALSO WANTS BANK STATEMENTS FROM FEB. 2006 TO NOW. BOY, THEY'RE NOSEY!!!

ENOUGH IS A ENOUGH

2009-09-13T10:57:00.002-04:00

YESTERDAY, ON A DOWN NOTE, I HAD PROBS WITH BOTH BOWELS AND BLADDER. WE DIDN'T LET THAT GET US TOO FAR DOWN, THOUGH. WE WENT OUT FOR AN AFTERNOON CONCERT AND ART SHOW AT LL BEAN. THE RAIN HELD OFF - JUST SPRINKLES. AND WE ENJOYED OURSELVES. TODAY I HAVE BEEN UP SINCE 2 AM WITH TUMMY PROBS, BUT THE SUN IS OUT!

FINALLY SINKING IN

2009-09-12T10:28:00.002-04:00

I'M RESIGNED TO MY NEW DESCRIPTION. HUBBY AND I NEEDED 24 HOURS PLUS TO DIGEST IT. WELL, I'M GETTING THE EXTRA HELP HOURS AFTER I GET AND FILL OUT THE STATE PAPERWORK, WHICH SHOULD ARRIVE TODAY. I RECEIVED SOME MEDICAL FORMS I NEED TO FILL OUT FOR MY APPT AT THE BLADDER CENTER WHICH IS ON THE 24TH. I ALSO NEED TO COMPLETE A PEE DIARY THE WEEKEND BEFORE THE APPT. DURING THAT TIME, I NEED TO DOCUMENT WHAT AND WHEN I DRINK, HOW MUCH, WHEN I PEE, AND HOW MUCH. I HAVE TO MEASURE MY PEE. HOW THRILLING!

GOOLD ASSESSMENT

2009-09-10T12:57:00.002-04:00

IT WENT WELL. I RECEIVED ANIMCREASE OF HOURS, FROM 6 TO 18 A WEEK. I NOW AM CONSIDERED NURSING HOME LEVEL AND QUALIFY FOR THE STATE'S LONG TERM MAINECARE LEVEL OF INSURANCE. I CALLED DHHS AND THEY ARE SENDING ME AN APPLICATION TO FILL OUT. THAT MEANS MY MAINECARE WILL BE REINSTATED UNDER LONG TERM CARE. THAT WAS A SHOCK, ALONG WITH BEING TOLD I'M AT NURSINGHOME LEVEL FOR CARE. I NEVER THOUGHT I WOULD HEAR THAT AND IT DOES CHOKE ME UP. I HAVEN'T BEEN ABLE TO TAKE MY VITAMIN D DUE TO BEING ON CIPRO FOR THE UTI, AND MY MOOD IS A LITTLE DOWN. HEARING THIS NEWS DOESN'T HELP EITHER. WELL, GOOD NEWS IS THAT ONCE I HAVE MY MAINECARE, MY MEDICAL CO-PAYS WILL BE GONE. THAT'S THE SILVER-LINING.

THE UPS AND DOWNS OF HOME HEALTH

2009-09-10T08:23:00.002-04:00

THE NEW CNA COULDN'T COME YESTERDAY - SOMETHING ABOUT A CAR SITUATION. SO, THE AGENCY SENT SOMEONE ELSE WHO I HAD MET IN THE PAST AT CHURCH. IT WAS A NICE SURPRISE AND IT WORKED OUT WELL. I'M HAVING A NEW GOOLD HOME ASSESSMENT THIS MORNING TO SEE IF I QUALIFY FOR MORE HOURS. CURRENTLY, I ONLY GET 6 HOURS A WEEK. WISH ME LUCK!

NEW CNA

2009-09-08T17:27:00.001-04:00

I MET HER TODAY AND YES SHE IS A CNA, NOT PCA. WHAT A GREAT MATCH WE ARE! I HAVE NO FEARS WITH HER AND AM TOTALLY COMFORTABLE WITH HER - AND GET THIS - HER NAME IS JEN!!!!!!

YES I HAVE IT

2009-09-05T09:18:00.001-04:00

YUP, I HAVE A UTI. HUBBY PICKING UP MED THIS MORN. WE WERE EVERY HOUR FROM 2AM ON. HUBBY IS MORE TIRED THAN I. NAPTIME, TAKE ME AWAY!

CRAZY VISIT

2009-09-04T08:39:00.002-04:00

WE WENT TO THE LAB TO LEAVE A URINE SAMPLE, AND JUST MY LUCK - THE ORDER WASN'T THERE! A WASTED TRIP. HUBBY HAS HEARD AT WORK ABOUT AN OVER THE COUNTER MED THAT MIGHT BE HELPFUL - AZO. I TRIED AND GUESS WHAT! I ALMOST SLEPT THROUGH THE NIGHT! I ONLY GOT UP ONCE. AZO HELPS WITH URINARY ISSUES AND I FIGURED I HAD NOTHING TO LOSE BY TRYING IT. I CALLED THE DOC THIS MORNING AND WAS TOLD THEY WILL REFAX THE ORDER AND LET THE ON-CALL DOC KNOW TO LOOK OUT FOR THE RESULTS. ALSO, KEEP TAKING THE AZO. BELIEVE ME, I WILL!

MORE CHANGES

2009-09-03T20:10:00.002-04:00

WELL, IT LOOKS LIKE I HAVE ANOTHER UTI. 4TH ONE IN 2 MONTHS! tHE DOC WAITED A URINE SAMPLE - I WENT IN, BUT THE OFFICE DID NOT FAX THE ORDER INTO THE LAB - SO NO MEDS YET. DOC IS ALSO REFERRING ME TO THE BLADDER CLINIC AT THE HOSPITAL FOR A NEUROURINALISIS. IT'S NOT SCHEDULED YET.
THERE'S GOING TO BE ANOTHER CHANGE IN MY PCA. I MENTIONED TO MY CASEWORKER MY DISCOMFORT WITH MY CURRENT PCA - SHE CANNOT TRANSFER ME. WELL, THE CASEWORKER CALLED THE HOME HEALTH AGENCY ABOUT THIS CONCERN, SO A CHANGE IS ON THE WAY. IT MIGHT BE AS SOON AS TOMORROW. I DID HAVE TO CHANGE THE TIME SHE'LL COME - FROM 1-3PM TO 12;30-2;30PM. THAT MEANS THERE WILL BE A 2 HOUR BLOCK BETWEEN WHEN SHE LEAVES AND GIL COMES HOME. SHE NEEDS TO LEAVE BEFORE 2;30PM IN ORDER TO PICK HER DAUGHTER UP AT THE BUS STOP. I HOPE THIS WILL WORK OUT.

SICKER THAN A DOG...

2009-09-02T08:21:00.002-04:00

YESTERDAY I HAD DIARRHEA ALL DAY, WHICH AS YOU CAN IMAGINE WEAKENS MY STRENTGH. I MADE IT THROUGH THE DAY WITHOUT HAVING TO CALL HUBBY TO COME HOME EARLY. DON'T KNOW WHAT I GOT INTO. BACKPAIN ALSO RETURNED AT THE SAME TIME. SO BAD IT WAS THAT TYLENOL DIDN'T TOUCH IT. BOO! BETTER TODAY.

NEW TREATMENT

2009-08-31T10:08:00.002-04:00

MOM- AS LONG AS THE SEAL IS NOT BROKEN, THE JAM SHOULD BE OK, BUT IF YOU WANT ANOTHER ONE OR TWO, JUST LET ME KNOW AND I'LL SEND IT DOWN WITH GIL THIS WEEKEND.
WELL, TAKING MATTERS INTO MY OWN HANDS, I'VE DECIDED TO DO WHAT ALOT OF MS PATIENTS ARE DOING - TAKING LARGE AMOUNT OF VITAMIN D PLUS CALCIUM DAILY. SOME RESEARCH HAS SHOWN PATIENTS DEMO LOWER RELAPSE RATES WHEN ON THIS. THE AMOUNT MANY ARE TAKING IS 15,000 IU DAILY. I PALN ON STARTING WITH 1,000 3 TIMES A DAY AND BUILDING ON THAT. HOPEFULLY IT WILL WORK!

A JAMMIN' TYPE OF DAY

2009-08-29T14:57:00.002-04:00

WE AMDE 3 BATCHES NOF JAM TODAY - BLACKBERRY, BLUEBERRY, AND LOW SUGAR BLUEBERRY. CHICKENS HAVE ALSO BEEN BUSY OFF & ON - SOMEDAYS THEY LAY 10 OR MORE EGGS, OTHER DAYS THEY LAY 1 OR 2. GO FIGURE.
THIS MAINE WEATHER IS A MARVEL. WE'VE GONE FROM 90 DEGREES DOWN TO 40. AGAIN, GO FIGURE.
BEEPA SWITCHED FROM TIME WARNER CABLE TO DIRECT TV. WE NOW HAVE 230 CHANNELS, PLUS HBO, FOOTBALL NETWORK, AND SO FORTH. NOW I ASK YOU - WHO NEEDS 6 DIFFERENT HBO CHANNELS? WE HAVE THAT, PLUS 4 DIFF DISCOVERY CHANNELS. OH WELL - WE'RE ENJOYING THEM!

MY FEAR CAME TRUE

2009-08-26T19:52:00.002-04:00

I WAS WORRIED THAT THE NEW PCA WOULD NOT BE ABLE TO HELP ME TRANSFER AND SHE COULDN'T WE TRIED 3 TIMES TO GET ME OFF THE TOILET TO NO AVAIL. WE HAD TO CALL THE HOME OFFICE FOR HELP. I ALMOST SLIPPED OFF THE SEAT! TINA, MY OLD PCA, CAME TO THE RESCUE. IT WAS GOOD TO SEE HER, BUT I WISH IT WAS UNDER BETTER CIRCUMSTANCES. ANITA, THE NEW PCA FELT BAD AND WAS IN TEARS. I COMFORTED HER, BUT WHAT WILL HAPPEN THE NEXT TIME?

MS NEWS

2009-08-26T09:14:00.002-04:00

A FRIEND EMAILED ME AN ARTICLE RE: MS AND DIET SOFT DRINKS THANKS THEA! IN THIS ARTICLE IT IS DISCUSSED HOW A FEMALE PATIENT WAS EXPERIENCING SYMPTOMS THAT HER DOC COULD NOT FIGURE OUT AND DETERMINED SHE HAD MS. THIS IS COMMON. ANYWAY, SHE DISCOVERED THROUGH A FRIEND INFO RE: THE NEGATIVE EFFECTS OF DIET SODAS ON SOME. ONCE SHE STOPPED DRINKING THIS, HER HALTH IMPROVED.
I'VE READ INFO SIMILIAR TO THIS. IT IS DOCUMENTED THAT IN SOME, ARTIFICIAL SWEETENERS NEG. INTERACT WITH PEOPLES' NEUROTRANSMITTERS, CAUSE NEG NEUROLOGICAL SYMPTOMS SUCH AS LOSS OF BALANCE, FATIGUE, MENTAL CONFUSION, NUMBNESS, AND SO ON. THIS IS THE CASE IN EVERYONE.
I CAN TELL YOU I DID STOP DRINKING LOTS OF DIET SODA. I DO DRINK IT ONCE IN A GREAT WHILE. I'VE NOTICED DECREASED NUMBNESS NOW, BUT LIKE I SAID, IT DOESN'T HAPPEN IN EVERYONE.

IN MEXICO, STUDIES HAVE NOTED SUCCESS IN MS PATIENTS WHO ARE RECEIVING STEM CELL TREATMENTS, IN MOST CASES, IMPROVEMENTS WERE NOTED WITHIN 2-4 WEEKS, AND THESE INCLUDE IMPROVED BALANCE AND STAMINA, AND DECREASED MENTAL CONFUSION. PATIENTS HAVE REQUIRED 1-2 TREATMENTS WHICH INCLUDE INJECTING THE STEM CELL UNDER THE SKIN - PAINLESS. I HOPE THE MEDICAL COMMUNITY WILL BE AS ENCOURAGED AS I AM READING THIS AND DO THIS TREATMENT IN THE STATES THROUGHOUT.

NEW PCA AND BAD BAD WEATHER

2009-08-23T18:41:00.002-04:00

I MET THE NEW PCA LAST FRIDAY - SHE IS SHORTER THAN I AND MIDDLE AGE. WE DON'T HAVE ANYHING IN COMMON, BUT I'M GOING TO GIVE IT THE OLD COLLEGE TRY. I JUST WORRY IF SHE'LL BE ABLE TO HLP ME PHYSICALLY WHEN I NEED HELP TRANSFERING OR IF I FALL.
FRIDAY WAS FUN. THE SKY TURNED BLACK AT 5:30 PM WITH HIGH WINDS. WE WERE ON OUR WAY TO KMART IN AUBURN AND NEEDED TO STOP FOR GAS. HUBBY GOT SOAKED, EVEN THOUGH WE WERE UNDER AN AWNING. WHILE THERE, WE WERE IN A VORTEX. THE PEOPLE IN THE STATION SAID THEY SAW A FUNNEL TOUCH THE RIVER BEHIND US!
WE DID MAKE IT TO KMART TO SHOP FOR BACK TO SCHOOL. HUBBY DROVE THROUGH A LARGE PUDDLE THAT NO ONE COULD SEE WITH THE RAIN AND WIND. THIS PUDDLE WAS SO LARGE THAT IT RIPPED THE PLASTIC COVER OFF THE SPARE TIRE THAT WAS UNDER THE FRONT OF THE CAR. WE DRAGGED IT AROUND UNTIL THE NEXT DAY WHEN HUBBY, MY DAD, AND ONE OF MY COUSINS HAD TO WORK TOGETHER TO GET IT OFF.
WE FOUND AT KMART, MOST OF THE PRICES WERE CHEAPER THAN WALMART, SO WE PUT STUFF ON LAYAWAY.
JOEY - YES I'M STILL READING ALOT. RIGHT NOW I'M READING THE DAVINCI CODE, WHICH I LOVE. I READ ANGELS AND DEMONS AND LIKED THAT TOO. I'M GLAD I READ THAT ONE FIRST BECAUSE ITI IS THE PREQUEL TO THE DAVINCI CODE.
THID HUMIDITY HAS ZAPPED MY STRENTGH. WE ARE GOING INTO WEEK 2.5 WITH ONLY 2 DAYS A BREAK THROUGHOUT. HOPEFULLY THIS WILL END SOONER.

IT WAS GOING TO HAPPEN SOONER OR LATER

2009-08-19T16:13:00.002-04:00

IT'S JUST A BUMMER EITHER WAY - MY PCA IS TAKING A DIFF JOB! IT'S GREAT FOR HER BUT HARD FOR ME. SHE'S GOING TO BE WORKING IN THE COMPANY'S MAIN OFFICE. SHE WILL BE HELPING FIND HER REPLACEMENT WHICH IS GOOD BECAUSE SHE KNOWS MY NEEDS. I'M JUST BUMMED OUT.

aWAY TO BEAT THE HEAT

2009-08-16T19:22:00.002-04:00

WE WENT TO SEBAGO LAKE YESTERDAY AND TODAY WHEN WE HEARD TH TEMP REPORTS - 90. IT FELT COOLER AND THE FAMILY LOVED THE WATER. THEY TOLD ME IT WAS WARM AND COMFORTABLE. I AM SO JEALOSE! I REALLY MISS THE WATER. IT SOMETIMES IS DIFF TO WATCH EVERYONE SWIM WHILE I SIT BACK AND READ. AT LEAST I WAS COOL IN THE SHADE.

BUSY ONCE AGAIN

2009-08-14T11:06:00.002-04:00

TO ANSWER JOEY'S QUESTION, MIKE DID NOT TAKE PHOTOS, BUT DID TAKE VIDEO. HE GOT A CAMERA THIS PAST CHRISTMAS AND LOVES IT!!!!!!
THE CHILDREN HAVE BEEN YELLING AND FIGHTING THIS MORN, SO I'VE KEPT THEM BUST - ME TOO I GUESS. WE CUT FLOWERS, DID PRESSINGS, AND MADE BOOKMARKERS. MY DAD TOOK THEM OUT FOR LUNCH - A BREAK!!!!!!!!!

BIG SURPRISE!!!!!!

2009-08-13T08:22:00.002-04:00

I GOT A YESTERDAY FROM OUR TRAVEL AGENT - SHE LET ME KNOW WE WERE GETTING A CREDITY OF A LITTLE OVER $900.00! WE HD PAID FOR A MEAL PLAN, AND NOW DISNEY IS RUNNING A SPECIAL WHEREAS THIS DEAL IS FREE WHEN STAYING AT ONE OF THE RESORTS. SURPRISE SURPRISE!!!!!!!!!!!!!!!!!!!
YESTERDAY THE CHILDREN WENT ON A WHALE WATCH. HELENA FORGOT TO TAKE HER MOTION SICKNESS PILLS AND SLEPT THROUGH THE VOYAGE. MIKE SAW A COUPLE OF WHALE AND SOME DOLPHINS.
I AM INVITED TO A WORK-RELATED REUNION PARTY SAT. I HEAR IT IS SUPPOSE TO BE HOT, SO INSTEAD OF THE PARTY, WE'LL TAKE THE FAMILY TO A BEACH WHERE IT WILL BE COOLER. PROBABLYA BETTER PLAN. I HAVEN'T SEEN ANYONE FROM WORK IN ALMOST 4 YEARS.

TRYING TO STAY COOL

2009-08-11T19:49:00.002-04:00

WHICH ISN'T EASY! THIS HUMIDITY SUCKS!!!!! AND I KNOW THAT IF I DON'T STAY COOL, MY MS WILL COME BACK AND THAT WON'T BE PRETTY. I KNOW, TAKE IT ONE MOMENT AT A TIME, AND I'M TRYING. MY NERVES JUST GET SO FRIZZLED.

PARTY HARDY!!

2009-08-09T11:00:00.002-04:00

I HAVEN'T BLOGGED A LOT LATELY BECAUSE I WAS AFRAID TO LET THINGS SLIP. YOU SEE, WE HAVE BEEN BUSY PLANNING HUBBY'S PARENTS 50TH WEDDING ANNIVERSARY PARTY. WE HAD THE PARTY YESTERDAY AND IT WENT WELL!!!!!! THEY WERE TOTALLY SURPRISED. ALL OF HUBBY'S HARD WORK WAS SUCCESSFUL! WE HAD BEEN BUSY ALL WEEK COOKING, PLANNING, FINALIZING, AND SO FORTH. I AND THE CHILDREN DID WHAT WE COULD, SUCH AS MAKING CONFETTI AND A SCRAPBOOK, CUTTING UP VEGGIES, ETC. AND IT WAS SO WELL WORTH IT. WE ALL CAME HOME AND WENT TO BED AFTERWARDS!!!!!!

PT NO MORE

2009-08-06T07:52:00.001-04:00

I'VE BEEN DISCHARGED FROM PT. SHE BELIEVES MY STRENGTH HAS IMPROVED. GOOD THING SHE CAME ON A COOLER DAY! I'M NOT UPSET ABOUT THIS. I'LL KEEP DOING MY EXERCISES AND I REALIZE THAT WITH MS, STRENGTH SOMETIMES GOES UP AND DOWN. I JUST HAVE TO KEEP IN MIND.

BIKE MS

2009-08-02T14:50:00.002-04:00

WE SPENT THE WEEKEND CHEERING ON CYCLISTS AT THIS EVENT. WE WERE REWARDED WITH A LOBSTER BBQ. IT WAS NICE TO RECONNECT WITH OTHER MSERS. DO YOU REALIZE THAT MAINE'S MS PREVALENCE IS 70% ABOVE THE NATIONAL AVERAGE? YOU WOULD THINK THAT THE GOVERNMENT WOULD DO SOMETHING ABOUT THIS!

HUMIDITY BREAKING????????

2009-07-31T08:27:00.001-04:00

WHO KNOWS? HUBBY HAD TO STAY HOME WITH ME YESTERDAY - TRANSFERING INDEPENDANTLY WAS OUT DUE TO THE HUMIDITY. TODAY IS SUPPOSE TO BE DRIER - I STRESS SUPPOSE TO BE. ONLY TIME WILL TELL. THE WEATHER HAVE BEEN WRONG BEFORE!

cramping sucks!!!!!!!!!!!!!!!!!

2009-07-29T09:18:00.002-04:00

I THINK ITS' BECAUSE OF THE HUMIDITY, BUT MY RIGHT LEG IS ALL CRAMPED UP! IT MAKES IT DIFF. TO TRANSFER.
OT WAS HERE YEATERDAY AND SUGGESTED WE PUT A LONG POLE, CEILING TO FLOOR BESIDE THE TOILET TO HELP WITH TRANSFERS. GREAT - THEN I WOULD BE ABLE TO DO POLE DANCING AFTER PEEING! SOMETHING TO LOOK FORWARD TO - NOT! AS IF!!!!!!!!!!!!!!!!

HUMIDITY THE PITS

2009-07-27T08:35:00.002-04:00

DIARREHEA FINALLY GONE. NOW THE HUMIDITY HAS ARRIVED. I DON'T KNOW WHY SOME FOLKS LOOK FORWARD TO THIS STUFF. IT MAKES ME TIRED AND MAKES IT DIFFICULT TO MOVE AROUND. WITH MS, WE'RE SUPPOSE TO AVOID HEAT, BUT THE DOCS DON'T SAY ANYTHING ABOUT THE HUMIDITY. BREATHING ALSO BECOMES DIFFICULT. JUST TAKE SALLOWER BREATHES I GUESS. THANKFULLY WE HAVE CEILING FANS!!!!!!!!!!!!!!

STILL NO UP TO PAR

2009-07-24T10:48:00.001-04:00

WOKE UP WITH MORE DIARREHEA. YUK!!!!!!!!!!!! AND THIS RAINY WEATHER ISN'T HELPING MY MOOD!!! SUNSHINE PLEASE!

DAY DIDN'T GET MUCH BRIGHTER

2009-07-23T19:58:00.002-04:00

STRENGTH DID RETURN, HOWEVER, I DEVELOPED DIARREHEA AS THE AFTERNOON WORE ON. WHEN I GET THIS, I GET EXTREMELY TIRED, SO I RESTED THROUGHOUT AND RELIED ON HUBBY TO ASSIST WITH TRANSFERS WHEN HE GOT HOME. NOW, I JUST WANT TO SLEEP, SO I'LL LISTEN TO MY BODY.

I'M BACK!

2009-07-23T08:35:00.002-04:00

I REALLY MISSED THIS SITE, SO.....I'M BACK!!!!!!!!
THIS MORNING WAS AN MS MORN. I HAD TO CALL MY HUBBY TO COME BACK HOME (JUST MINUTES AFTER HE LEFT FOR WORK). I COULDN'T GATHER ENOUGH STRENGTH TO LIFT MYSELF OFF THE TOILET. IT HAPPENS EVERY SO OFTEN. I HATE IT WHEN IT DOES!!!! BUT AFTER A REST BREAK, MY STRENGTH RETURNED. THANKFULLY!!!!!!!!

AN MS LIFE

2009-05-25T16:09:00.001-04:00

I have a new blog site, as people have stated they had trouble with the last one. The new address is "anmslife.sosblog.com". Join me there!

PT VISIT

2009-05-21T15:51:00.002-04:00

Everything went fine. Just one visit and I already see a difference. My legs are looser and easier to move. I have another visit a week from tomorrow.

SHOULDN'T COMPLAIN

2009-05-19T09:44:00.001-04:00

No I shouldn't, but I do. One of the gals at hubby's work had a client fall untop of her and snapped a ligament in the knee. Can you say OUCH!!!!! She has an MRI today. That situation is alot worse than my leg stuff. Another proof that we should be thankful for what we have.

LEGS, LEGS, LEGS

2009-05-18T10:06:00.002-04:00

My legs cont. to give me trouble. I can hardly wait for PT to begin Wed!!! They cont to be stiff, tight, and crossed. Painfull? No. And I am thankful for that. They're just bothersome.

BUSY LIFE

2009-05-14T09:22:00.002-04:00

That's what I call and it's not always fun. We have had something planned every night this week - all kids' stuff (concerts, chorus, baseball). Even this up coming weekend. Oh the life of a parent! Also this week - my son lost our tv remote, so I haven't been able to use the Wii. Now no physical movements and believe me, that's no fun! PT starts next week.

YEAH! NEW WHEELCHAIR PAD IS IN!

2009-05-12T13:21:00.002-04:00

Yup - it was delivered this AM! I tried it on my motorized chair - it made the seating too high for my liking, but the pad is for the manual chair. We bought it particuliarly for our trip to Florida. Can't wait!

HAPPT MOM'S DAY

2009-05-10T12:05:00.000-04:00

MED CHANGE

2009-05-07T09:15:00.001-04:00

Well, I slept through the night with no problems. My only concern is that my leg tightness was worse in the morn. I'll need to keep an eye on this.

DOC VISIT

2009-05-06T10:21:00.002-04:00

Things went well yesterday. Doc did increase my muscle relaxant - doubled nighttime dose. He also gave me a script for PT for my trunk and legs. Now I need to find a PT - hopefully locally and one that takes Medicare. Wish me luck!

FINALLY FEELING BETTER

2009-05-02T10:30:00.002-04:00

Just have a stuffy nose every now and then. Everyone else in the house is doing better. The sunny days also help elate the mood.
I have a neuro appt Tues. so that means I need to start getting my list together of complaints and concerns. Hopefully more research has been done to help us msers.

STRENGTH SLOWLY COMING BACK

2009-04-29T18:46:00.001-04:00

Able to move and transfer easier today. Believe me I'm happy about that.

ONE DAY OFF

2009-04-28T17:56:00.001-04:00

Well I was one day off with the MS walk. We arrived at the correct location, but one day late. I'll just need to mail-in the money. I hate being wrong.

SICK OF BEING SICK

2009-04-27T10:14:00.002-04:00

Although I have been down for one day plus with thus cold, I feel that is long enough! When I get sick, my strength goes out and I need assistance with transfers. Loss of independence sucks! I know it is only for a short time, and I need to keep reminding myself that. In the meanwhile, just grin and bear it.

A SAD DAY IN MUDVILLE

2009-04-24T12:37:00.002-04:00

Today ends a small era in our household. We concede. Buddy the pig has a new home. He was somewhat difficult at times for me to handle from my chair. His new owner will be by to pick him up this evening and I know this is a good thing. She, the new owner, has had pigs before so she knows what she is doing. We wish them both well.

IT'S SPRING FEVER TIME

2009-04-22T10:54:00.002-04:00

And I don't mean because of the weather. Hubby came down with it first last Thursday. Scratchy throat, headache. then came the runny nose and body aches. Helena got it next on Fri. Their weekend was a mixture of sleep, coughing, sneezing, etc. Also fevers. They're both doing better now, just occassional coughing, runny noses. I got the throat issues now that started yesterday. And am very tired. Trying to head it off with cold meds. If I get what they have/had I'll be down for weeks. Wish the best!

FIRST ONE OF THE SEASON

2009-04-18T09:31:00.002-04:00

Yesterday was near 70! So I went outside in the afternoon with a book to read. Well, I fell asleep which is common. What isn't common is I was in the sun and you guessed it, I got my first sunburn of the season. Not a bad one by any means. When I got inside I realized how warm I was so I pushed the fluids. Well, the legs became weak for about 1/2 hour, but I rebounded quickly and the rest of the day went fine.

BEING THE CENTER OF ATTENTION

2009-04-15T09:48:00.002-04:00

At my son's band concert, my legs started jumping. It caught the eyes of some nearby kids, who just stared. I'm use it this by now. I even laugh it off. I just wish if they have questions, they'd ask.

BUSY EASTER

2009-04-13T09:16:00.002-04:00

We started the day by giong out for breakfast. I was worried that because we were giong early that my stiffness would make life interesting, but the meds kicked in and ) probs occured. Then for the rest of the day we played new Wii games to get our exercise. I discovered that there a few games that the disability makes impossible to play. That totally bummed me out and I forced myself to get away from the games for a while. That way I was able to get my head together.

LEG DRAMA

2009-04-10T09:45:00.001-04:00

I've had acouple of relaxing days with my leg stiffness, but today it has come back full force. I woke uo with stiffness in most of my joints throughout. Not sure if it's due to the meds and am checking into it.

MS WALK

2009-04-09T12:06:00.000-04:00

The walk is set for April24th throughout state.