Leslie

Patient Leader

NAME IS LESLIE HILLBURN I WAS DIAGNOSED WITH MS IN AUGUST OF 2003. MY SYMPTOMS ARE CHRONIC FATIGUE (SEVERE) WEAKNESS ON MY ENTIRE RIGHT SIDE, MOST DAYS I WALK NORMAL BUT ON BAD DAYS I HAVE A HUGE LEAN AND TEND TO WALL WALK! , I GET SEVERE MS HEADACHES, LEG SPASTICITY IN BOTH LEGS MORE SO ON THE RIGHT. I DROP THINGS AND SLUR ALOT. I HAVE A TOTAL HEAT INTOLERANCE WHICH MOST OF US DO! I GET SHORT TERM MEMORY LOSS NOT SURE IF IT IT AGE RELATED OR MS LOL. I DO GET SEVERE DEPRESSION AT TIMES BUT USUALLY ONLY WITH RELAPSES, I HAVE HAD 4 BAD ONES SINCE MY DIAGNOSIS AND THAT IS ONE OF THE REASONS I GAVE UP VOLUNTEERING FOR EMS AFTER 17 YEARS. I WAS BLESSED WITH A VERY SUPPORTIVE FAMILY THAT MOST TIMES UNDERSTANDS MY MOODINESS! I DECIDED TO MAKE A SUPPORT PAGE CALLED WE'RE NOT DRUNK WE HAVE MS SO I COULD MEET PEOPLE THAT UNDERSTAND ME AND WE WOULD HAVE A PLACE TO COME TO. JUST INCASE YOU WERE WONDERING WHY I PUT SO MANY TIGERS ON MY PAGE HERE IS WHY! A TIGER IS A SILENT BUT STRONG FIGHTER, YOU NEVER KNOW WHAT IT WILL DO NEXT (LIKE MS AND OUR BODIES) ONCE IT SETS OUT TO DO SOMETHING IT WILL NOT STOP! LAST BUT NOT LEAST IT NEVER GIVES UP! THAT SOUNDS LIKE WHAT US MS'ERS ARE!!!! WE WILL FIGHT TO THE END AND NEVER GIVE UP! THESE ARE MY BELIEFS! YOU KNOW OUR LIVES ARE SO PRECIOUS AND HOPE, FRIENDS, FAMILY AND LAUGHTER IS WHAT GETS US THE THE WORST DAYS OF OUR LIVES! I GET MANY MESSAGES ABOUT HOW I CAN MAKE A COMMENT ABOUT MY DISABILITY LIKE IT IS NO BIG DEAL, OR JOKE ABOUT IT. HERE IS MY ANSWER............ LIFE IS SHORT, ONLY YOU CAN MAKE YOUR LIFE STORY! I CHOOSE TO MAKE MY LIFE STORY A HAPPY ONE! I WANT MY LEGACY TO BE, THAT NUT ALWAYS SAID THIS OR DID THAT SHE COULD ALWAYS BRING A SMILE AND I WANT IT TO BE THE TRUTH. WORKING WITH EMS FOR SO MANY YEARS AND VOLUNTEERING HAS BEEN MY PASSION I HAVE HELD MANY HANDS AND WATCHED MANY LAST BREATHS TAKEN. I HAVE SEEN PEOPLE IN TOTAL FEAR OF DYING, AND MANY THAT HAVE DROPPED ME TO MY KNEES BECAUSE I COULDN'T UNDERSTAND WHY THEY LEFT SO YOUNG. WHEN OUR PAGERS WOULD GO OFF YOU GO THROUGH THE SCENARIO OF WHAT THE CALL MAY BE LIKE WHEN YOU GET THERE AND HOW YOU WILL HANDLE IT, MY FIRST REACTION WHEN I WOULD GET ON A SCENE WAS TO DISTRACT THE PATIENT TO HELP CALM THEM DOWN AND EASE SOME OF THE STRESS OF THE SITUATION AT HAND. THAT IS WHAT I WAS GOOD AT! IT LOWERS BLOOD PRESSURE, IT CAN HELP VITALS, AND IT ABSOLUTELY HELPS TO TAKE BETTER CARE OF THE PATIENT! SO SOMETIME I MAY APPEAR TO BE A LITTLE CALLUS WITH SOME OF MY JOKES BUT ONLY THOSE OF US THAT ARE TRULY LIVING DAY TO DAY WITH ANY CHRONIC ILLNESS KNOW HOW IT FEELS. FOR THE CAREGIVERS WE ARE NOT BEING SMARTYPANTS WE ARE SIMPLY COPING WITH THE MOMENT! LAUGHTER IS THE GREATEST GIFT THAT WE CAN GIVE AS HUMAN BEINGS IT SHOWS THAT WE ARE REAL AND COMPASSIONATE! I REALLY ALSO WANT TO TELL EVERY CAREGIVER/ LOVED ONE/ FRIEND/ NIGHT IN SHINING ARMOR/ HERO THANK YOU FOR BEING THERE! THANK YOU FOR TRYING TO UNDERSTAND! THANK YOU FOR YOUR STRENGTH WHEN WE ARE DOWN! THANK YOU FOR CARING! SO I HOPE THIS EXPLAINS WHAT WE ALL FEEL I COULD GO ON FOR DAYS ABOUT THIS BUT WE DON'T WANT TO NOT ONLY PULL OURSELVES DOWN WITH PITY , WE DON'T WANT TO PULL THOSE AROUND US DOWN EITHER. ANGER IS A VICIOUS CYCLE AND HARBORING ONLY HURTS YOU AND THOSE YOU LOVE. I WOULD MUCH RATHER SEE A SWEET SMILE AND EYES LIGHT UP IF ONLY FOR A MOMENT OR ACTUALLY GET TO SEE A RARE BIG BELLY LAUGH FROM SOMEONE THAT IS GOING THROUGH HELL! SOMETHING THAT ALL OF MY LIFE FRIENDS KNOW ME FOR IS THESE SAYINGS..... DON'T FORGET TO SAY I LOVE BECAUSE YOU NEVER KNOW IF IT WILL BE THE LAST CHANCE YOU GET. FLARES ARE LIKE A HURDLE IN THE ROAD OF LIFE, EVERYONE HAS THEM! I HAVE SEEN THAT LAST CHANCE SLIP BY TOO MANY TIMES. SO NEXT TIME THAT YOU FEEL ANGRY OR JUST A LITTLE OUT OF SORTS BECAUSE OF A SITUATION TRY TO MAKE A WISE CRACK APPROPRIATELY AND SEE WHAT HAPPENS! I TYPE IN CAPS BECAUSE OF VISION ISSUES AND IT ALSO HELPS THOSE ON MY SUPPORT PAGES!

Past Awards Participation

Fourth Annual Health Activist Awards

Finalist

Best in Show: Facebook Rookie of the Year

Third Annual Health Activist Awards

Nominations

Best in Show: Community or Forum Best in Show: Facebook Geek Health Activist Hilarious Health Activist Health Activist Hero Rookie of the Year Best in Show: Blog

Fifth Annual Health Activist Awards

Nominations

Best in Show: Facebook

Sixth Annual WEGO Health Awards

Nominations

Best in Show: Facebook
Leslie

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