LET ME REITERATE ON MY TOPIC, NEVER ON MY CYBER FAMILY,NOR MY FAMILY,(WHICH THERES DAYS I'D LIKE TO ON THEM).
I'VE BEEN ABSENT HERE FOR SOMETIME---WELL I DO CHECK ON EVERYONE,BUT DON'T ALWAYS POST.
BETWEEN THE MS AND THE LUMBAR SPINAL DISEASE, I HAVE WENT DOWN HILL QUICK IN THE LAST 2 MONTHS.
EVERYDAY IS A STRUGGLE, I HAVE DEVELOPED SEVERE PROBLEMS WITH SMALL MOTOR SKILLS OUT OF THE BLUE.WALKING IS QUITE DIFFICULT,HECK I THINK I OWN EVERY WALKING AIDE,ORTHODIC LEG BRACES, A CANE, A WALKER AND A WHEEL CHAIR.
I THINK REALITY REALLY SUNK IN WHEN I WENT BACK TO THE ORTHODIC DR ON FRIDAY AND HE WAS SHOCKED WITH THE ATROPHY IN BOTH LEGS.
THE ATROPHY IS UNEXPLAINED AT THIS POINT,ITS NOT FOR THE LACK OF SITTING AROUND.I AM ON MY LEGS.THAT REALLY TOOK A TOLL ON ME FRIDAY MORNING.
MY VISION HAS DETERIATED IN THE LEFT EYE,WENT ANOTHER ROUND OF SOLU-MEDROL LAST WEEK FOR ANOTHER BOUT OF OPTICAL NEURTITIS.I FINALLY TOLD THE NEURO NO MORE ROIDS FOR THE OPTICAL NEURITIS.IT'S NOT HELPING.
I JUST HAD ANOTHER BRAIN MRI---MY NEURO PROMISED HE'D CALL, HE SAID HE'D EVEN LOOK AT THE MRI HIMSELF WENSDAY AFTERNOON, WELL I ALREADY HAVE THE REPORT AND I KNEW BEFORE I LEFT THE IMAGING CENTER WHAT IT SAID.I HAD A VERY LONG TALK WITH A NEURO-RADIOLOGIST THAT WAS TEACHING A CLASS WHEN MY MRI WAS DONE SO HE DISCUSSED IT WITH ME.
EVIDENTLY THE REBIF IS OBVIOUSLY NOT WORKING.I AM SERIOUSLY CONSIDERING ON GOING OFF THE REBIF.
THE REST OF THE MEDS ARE NOT CONTROLLING THE MUSCLE SPASMS AND THEY HAVE ME ON A ARSONAL OF THEM TO STOP THEM.THEY ALL PRODUCE MUSCLE WEAKNESS AND SO FORTH,SO HONESTLY CONSIDERING ON TAPERING OFF OF ALL THE MEDS AND SEEING WHAT HAPPENS.IT SEEMS AS IF THEY MAYBE COUNTER PRODUCTIVE AT THIS TIME.TOO MANY AND THEY ALL HAVE THERE SIDE-EFFECTS.
BIG ISSUE IS COGNITIVE ISSUES,I'D FORGET MY HINEY IF IT WASN'T ATTACHED.
I WENT THROUGH SOME REAL EMOTIONAL DIFFICULTIES HERE BACK A FEW WEEKS AGO.THAT WAS A NIGHTMARE, BUT I REALLY CLEANED THE NEGATIVITY OUT OF MY LIFE THAT HAS BEEN A BIG HELP.
I PUT MY FOOT DOWN AND GONNA STICK TO MY GUNS.
I DID GO BACK TO WORK IT'S ONLY 12 HOURS A WEEK BUT IT DOES MAKE ME FEEL HUMAN AND GIVES ME I THINK THE ONLY SANITY I HAVE RIGHT NOW.
THURSDAY IS FILLED WITH DRS. APPOINTMENTS.I THINK I HAVE AN APPOINTMENT WITH EACH ONE OF MY DRS. AND I'M GONNA EXPLAIN HOW I FEEL AND HOW I FEEL ABOUT ALL THE MEDS.
I COMPLETELY UNDERSTAND WHAT YOU ARE SAYING. YOU ARE READY TO STOP ALL THE MEDS THAT YOU CAN AND SEE WHAT YOU ARE LEFT WITH. THIS MAKES TOTAL AENSE TO ME. WHY SUFFER SIDE EFFECTS ON TOP OF THE REAL SYMPTOMS OF THE DISEASE?
I WISH SO HARD THAT I COULD SEND YOU SOME OF MY PAIN-FREE DAYS. YOU ARE SO REMARKABLE IN YOUR VIEW OF LIFE (YES, I KNOW THAT YOU HAVE HAD REAL DOWN TIMES AND HAVE QUESTIONED SOME VERY DEEP BELIEFS). THIS DESIRE TO DROP THE UNHELPFUL MEDS IS A VERY BRAVE AND STRONG THING TO DO. MANY OF US WOULD BE AFRAID TO DO THIS.
I'M STILL IN TOTAL AWE THAT YOU ARE LEAVING THE HOUSE TO WORK! I, WHO SUFFER SO MUCH LESS THAN YOU, DON'T EVEN TRY TO DO THIS. KNOW THAT I HOLD YOU DEAR TO MY HEART, AND THINK ABOUT YOU EVERY DAY. I SHOULD TALK TO YOU MORE OFTEN, YOU ARE THAT IMPORTANT.
AND...UH....YES, YOU ARE CORRECT THAT YOU MAY NOT LEAVE US. I KNIT A MEAN BODY SUIT AND AM STILL HAVING TROUBLE WITH THE THIRD ARM AND THE THIRD BOOB. YOU WOULD NOT LIKE IT, SISTER.
WE WILL BE THINKING ABOUT YOUR MARATHON DAY OF VISITS ON THURDAY. I HOPE THEY UNDERSTAND WHERE YOU ARE COMING FROM. YOU SEEM TO HAVE A GREAT SET OF DOCTORS AND FOR THAT WE ARE SO THANKFUL. YOU TEACH US SO MUCH, AND WE ALL NEED TO KNOW YOU ARE STILL WITH US.
ISN'T THERE A PLACE TO SEND TEENAGERS FOR A WEEK TO REGAIN SANITY?? THERE MUST BE A PLACE, YOU KNOW, LIKE THAT CANYON IN UTAH WHERE THEY HAVE THOUSANDS OF RESCUED ANIMALS? WHY NOT SHIP OFF OUR TEENAGERS FOR SOME RESPITE??? ;))
I AM IN AWE OF YOU, BEING IN THAT MUCH PAIN AND WORKING! MAYBE GOING OFF THE MEDS WILL HELP SHOW YOU WHICH ONES ARE ACTUALLY BENEFITING YOU AND WHICH ONES AREN’T. WOULD GOING OFF THEM ONE AT A TIME HELP YOU BETTER SEE WHICH ONES ARE WORKING?
ARE YOU TAKING SOMETHING FOR SPASTICITY? MAYBE YOU CAN GO OFF THAT ONE FIRST . . . I’VE HEARD THAT SPASTICITY, ALTHOUGH PAINFUL (I KNOW HOW BAD IT CAN BE) ACTUALLY HELPS US MAINTAIN AMBULATION. TOO FLAX OF MUSCLES INHIBITS AMBULATION.
HON, YOU KNOW YOU ARE ALWAYS IN MY THOUGHTS AND PRAYERS AND I AM SO SAD TO HEAR THAT THINGS HAVE NOT GOTTEN ANY BETTER FOR YOU.
YET DESPITE IT ALL, YOU SHOW YOUR COURAGE AND STRENGTH ONCE AGAIN. I TOO WISH I COULD SEND YOU PAIN FREE DAYS. THE SIDE EFFECTS FROM ALL YOUR MEDS MUST NOT BE FUN AND MAYBE GOING OFF THEM WILL GIVE YOU A LITTLE RELIEF FROM THAT AT LEAST.
I HOPE THINGS GO WELL THURSDAY WITH YOU AND KNOW THAT YOU ARE ALWAYS IN MY HEART.
SISTER QUIX, WHEN THIS FORUM STARTED HECK IT WAS YOU AND I AND A HAND FULL AND LOOK HOW ARE FAMILY HAS GROWN.
MY NEURO IS AT HIS WITTS WITH THE SPACTICITY AND THE PAIN. THEY THOUGHT THEY WERE GONNA PUT A SPINAL CORD STIMULATOR IN , I TOOK ONE LOOK AT THING AND ASK , JUST WHERE IN THE HECK DO YOU THINK YOUR GONNA PUT THAT, HE SAYS BY YOUR HIP, WELL DON'T THINK SO, AIN'T NO FAT ANYWHERE.
I'VE BEEN ON EVERY MED FOR SPACTICITY THATS ON THE MARKET AND STILL NOT GETTING RELEIF, SO I'M GONNA TAPER OFF AND SEE WHAT HAPPENS.
WORK KEEPS MY SANITY AND MAKES ME FEEL PRODUCTIVE.IT'S A MENTAL THING I GUESS.
MY 2 TEENAGERS DON'T GIVE MUCH PROBLEMS,THEY ARE VERY HELPFUL,IT'S MY 2 ADULT CHILDREN THAT NEED A REALITY CHECK.
I HAVE NO INTENTIONS OF LEAVING THE FORUM,THERE'S TO MANY BOUNTY HUNTERS HERE.
I'M SURE MY DRS. WON'T BE HAPPY WITH MY DECISIONS,BUT I GOTTA FIND OUT IF THEY ARE CONTRIBUTING TO THE MUSCLE WEAKNESS AND SO FORTH.
GUARENTEED THEY AIN'T GONNA COME TO MY HOUSE 3 TIMES A DAY AND PLAY DENNIS THE MENNIS WITH ME,WITH A SLING SHOT AND SHOT THEM DOWN MY THROAT.
THE RADIOFREQUENCY ABLASTATION WAS A 50-50 SHOT.I HAVE NOT LET THEM DO THE RIGHT SIDE YET.WILL SEE THE DR. THURSDAY TO DISCUSS THAT.
IF I GIVE UP WHAT DO I SHOW MY KIDS,LIFE NEEDS TO GO ON REGARDLESS,THERE'S OTHERS WORSE OFF.
HONEY THEY HAVE ME ON AN ARSONAL OF SPASMATIC MEDS,---BACLOFEN,SOMA,VALIUM AND QUALIQUIN.I TAKE THEM ALL TOGETHER 4 TIMES A DAY.PLUS DILAUDID 8MGS 4 TIMES A DAY FOR THE PAIN.PLUS NEURONTIN FOR THE NEUROPATHIC PAIN.
BESIDES THE MS , I ALSO HAVE AN INCURABLE NERVE DISEASE IN THE LUMBAR SPINE SO THEY FEED OFF EACH OTHER.
WE'LL SEE HOW MY DRS. REACT.
I WILL TAPER OFF THEM , NO COLD TURKEY,I'D NEVER GO THROUGH A WITH DRAWL PERIOD.THATS TO HARSH ON THE BODY AND ABRUBTLY STOPPING 2 WILL CAUSE SEIZURES.
Thanks for talking this through out loud with us as witnesses. The thought about going off your drugs makes perfect sense to me and I'll be curious to se e what your drs think as well. If you are responsible for helpnig Quix get this haven started, thank you!!! My best to you, Lulu
SO YOU'RE PART OF THE ORIGINAL CREW THAT STARTED THIS WONDERFUL FORUM; THANK YOU SO VERY MUCH!
I READ ABOUT YOUR THURSDAY APPOINTMENTS AND GOT ALL WORN OUT! I GUESS THAT'S BETTER THAN GOING BACK AND FORTH ON SEPARATE DAYS. I HOPE THEY ALL GO WELL FOR YOU, AND THAT YOUR VERY STRONG AND BRAVE PLAN FOR FINDING OUT IF SOME OF YOUR MEDS ARE WORSENING YOUR SYMPTOMS THROUGH THEIR SIDE EFFECTS BEARS FRUIT QUICKLY.
I HOPE AND PRAY THAT YOU GET SOME RELIEF. I'LL BE THINKING ABOUT YOU ON THURSDAY.
T-LYNN, I ONLY WANTED TO SAY THAT YOU INSPIRE ME, I AM HOPING TO PULL THINGS TOGETHER AND GET A PART TIME JOB... IF YOU CAN DO IT I CAN TOO. I HAD A VERY DOWN WEEK AND THIS WEEK-END I WAS IN THE DUMPS, I CRIED MORE THIS WEEK THAN I HAVE IN MY WHOLE LIFE, BUT I THINK IT'S LOOKING UP, AND I'M THANKFUL FOR POSTS LIKE YOURS (EVEN THOUGH YOU WERE VENTING) THAT INSPIRE ME TO PUSH ON AND UP. THANK YOU!!
YOU ARE IN MY THOUGHTS, AND I'M THANKFUL THAT YOU NOT ONLY HELPED START THIS GREAT FORUM, THAT YOU HAVE STUCK WITH US AND STILL DROP BY TO GIVE US 'NEWBIES' HOPE... THAT WE CAN STILL HANG IN THERE NO MATTER WHAT.
IT REQUIRES SO MUCH ENERGYTO POST, SO DON'T FEEL THE NEED TO RESPOND TO ME TOO, WOMAN!
JUST WANTED TO SAY THAT I TOTALLY UNDERSTAND WHY YOU ARE DOING THIS, AND I KNOW THAT EVEN THIS "DECISION" HAS GIVEN YOU MORE STRENGTH. I COULD FEEL POWER IN YOUR RESPONSED TO OTHERS LATELY (well they are always full of power - but this was different), AND NOW I KNOW WHY.
WILL BE HERE STANDING TALL WHY YOU AND YOUR DRS WORK ON A WAY TO TRY THIS. MY GOSH, THE DILADUD ALONE, NOT TO MENTION THE OTHERS IS ENOUGH TO LAY ANY OF US FLAT. IT SLOWED MY BREATHING TO AN ALMOST HAULT IN THE HOSPITAL ONE TIME.
GOOD LUCK TO YOU THIS WEEK W/YOUR APPTS. HOPE THE DRS. DON'T PUT UP TOO MUCH OF A FUSS - THEY SHOULD KNOW YOUR ARSENOL BY NOW.
They told me a long time ago and it kept me sober for a long time "You help yourself by helping others" and i sure what is happening here in this forum. I was only going to read the forum today, but i guess you inspire me to write a little. I am new to the forum and also not diagnosed yet, but i am pretty sure how i feel. I am trying to stay out of the hospital with pneumonia, so my dr. says. I do feel awful and couldnt sleep because i had a hard breathing, which i do anyway, but this was worse.
Glad to hear you are staying around too, it sounds like i am not the only one who needs you. Good luck on Thursday !
May god bless , and guide you in all your desisions, and May He also open your doctors minds to complete understanding,.
i'm trying right now to wean off my pain meds,via doctors plans of trying a "new "program.
Its been rather hellish 5 days, with drawels have been hard.tomorrow hoping to go see an older family doctor to get his seconds on "her' program.
Please know your in my prayers, and do be careful weaning down and off.
You are very brave and strong! humming4u
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