Family

IT’S MY STROKE-AVERSARY ON SATURDAY!
PHOTO BY AIMAGE, INC: LISA SHEPARD

PHOTO BY AIMAGE, INC: LISA SHEPARD

9 YEARS AGO (ON THE 16TH), I HAD A MASSIVE BRAINSTEM STROKE – BIGGER THAN MY DOCTOR HAD EVER SEEN! A FELLOW STROKE SURVIVOR DESCRIBED A STROKE SO WELL W/THIS ANALOGY:
“… my world was 1 of those snow globes you get the airport and you shake it all up and the pieces go flying all around and eventually fall back into place they’re just not in the places they were before. “

I AM NOW 39 YRS. OLD, CONFINED 2 A W/C, BARELY MOVE, AM FINALLY LEARNING 2 SPEAK, MY LEFT SIDE IS PARALYZED, I HAVE DOUBLE VISION…NEED I GO ON? I NEVER DID DRUGS, SMOKED, DRANK ALCOHOL, ETC., & I EXERCISED: AEROBICS, BALLET & OTHER FORMS OF DANCE. BUT I NEVER FOUND OUT WHY I HAD A STROKE. THE BEST GUESSES ARE CUZ THE DOCTORS COULD TELL FROM BRAIN SCANS THAT THE ARTERIES IN MY BRAIN ARE SOMEWHAT SMALLER THAN AVERAGE (WHICH MAKES THE POSSIBILITY OF A STROKE MORE LIKELY), OR CUZ I HAD TRIED A NEW BIRTH CONTROL WEEKS EARLIER, OR CUZ I HIT MY HEAD A FEW DAYS EARLIER.

LIKE I SAID, I HAVE A VERY THIN ARTERY THAT MAY HAVE GOTTTEN BLOCKED, AND IF I’D EATEN MORE GREENS (I WASN’T A TERRIBLE EATER BEFORE MY STROKE, BUT I HAD MY FAIR SHARE OF EMPTY CALORIE FOODS, CANDY, & SODA, & REFUSED ANY BEANS & ALL FISH– IN FACT, ANYTHING GREEN & HEALTHY WAS NASTY! ), IT MAY HAVE HELPED THIN MY BLOOD. BUT I BELIEVE THAT BECUZ I EXERCISED & TOOK CARE OF MYSELF, IT MAY HAVE MADE THE STROKE OCCUR LATER IN MY LIFE (CHILDREN AS YOUNG AS 6 YEARS OLD HAVE BEEN KNOWN TO SUFFER A STROKE)! THE DOCTORS THOUGHT I WOULD ONLY BLINK THE REST OF MY LIFE, BUT I BELIEVE I’VE RECOVERED SO MUCH, CUZ I WAS HEALTHY!

BUT I COULD NO LONGER RAISE MY 3 KIDS, BE A PARENT GROUP COORDINATOR, BE A ROOM MOM OR TEAM MOM, OR TEACH MY 2ND GRADE CLASS, OR TEACH MY SCRAPBOOK CLASSES, OR TEACH THE CHURCH PRIMARY MUSIC TO THE KIDS THAT WERE 18 MONTHS-12 YEARS OLD. I HAD EVERY RIGHT 2 FEEL LIKE MY YOUTH & DREAMS WERE STOLEN FROM ME! BUT INSTEAD, I FEEL LIKE I WAS ABLE TO LIVE A VERY FULL LIFE AND HAVE THE ABILITY TO GIVE BIRTH TO 3 BEAUTIFUL CHILDREN BEFORE I COULD NO LONGER HAVE THAT CONTINUED BLESSING BECAUSE OF MY HEALTH. THIS MAY NOT HAVE HAPPENED IF I HAD TRIGGERED A STROKE AT A YOUNG AGE, OR HAD BEEN A SMOKER. MY COLLEGE DEGREE, WHICH I MAY NOT HAVE RECEIVED IF I HAD HAD MY STROKE WHEN I WAS YOUNGER, HAS ALSO ASSISTED ME IN WAYS I DIDN’T ANTICIPATE, EVEN NOW!

A CONVERSATION FROM THE MOVIE, THE GOODBYE GIRL GOES AS FOLLOWS:
Paula McFadden asks,” What is that slop you are putting into my dishes?”
Elliot Garfield answers “Granola, wheat germ, soya, lecithin, natural honey. My body is a temple, Miss McFadden, and I am worshiping it. It’s what gives me my energy, my vitality and my natural disposition.…May I fix you a bowl? “

IF YOU CHOOSE THE PROPER FOODS, I BELIEVE YOU WILL HAVE BETTER HEALTH THAN YOU WOULD IF YOU ATE FOODS THAT ARE NOT NUTRITIOUS. I NOW LOVE MY VEGETABLES & SOME FISH & ENJOY SOME BEANS! I AM NOW ON A BIG HEALTH KICK, & IF I DO EVER WALK, I THINK IT WILL BE CUZ OF MY HEALTHY LIFESTYLE NOW, & CUZ OF MY LOW WEIGHT.

YOUR LIFE IS DEFINATELY SHAKEN UP DIFFERENTLY WITH A STROKE & IS NOT HOW U SAW IT, BUT LIKE THE SNOWGLOBE, THINGS FALL BACK IN PLACE, & CAN STILL BE BEAUTIFUL! I SHARED MY NEW FAVORITE SONG, WHERE IT SHARES HOW OUR “TRIALS OF THIS LIFE, THE RAINS, THE STORM’S OF THIS LIFE,ARE YOUR (GOD’S) MERCIES IN DISGUISE.” I CAN SEE HOW THAT IS TRUE FOR ME, & IF I COULD GO BACK IN TIME, I WOULDN’T STOP MY STROKE FROM HAPPENING! I AM GRATEFUL 2 GOD 4 SEEING THE BIGGER PICTURE, & ALLOWING ME 2 SUFFER, SO I COULD GROW FROM THIS EXPIERIENCE! AS A PARENT, I KNOW IT’S NOT EASY 2 LET A CHILD SUFFER, EVEN IF WE KNOW THE GOOD THAT WILL COME FROM THAT SUFFERING!

THE TEEN YEARS ARE HERE!

AN UPDATE: ZACH IS NOW A SOPHOMORE, LEARNING THE PROPER WAY 2 SIGN (NOT “JENNY-ESE”), & DRIVING. JESS IS IN 7TH GRADE, & SOPH IS IN 5TH GRADE. NEXT YEAR, I’LL HAVE NO BABIES IN ELEMENTARY SCHOOL! IT IS KILLING ME THAT I NO LONGER HAVE MY BABIES, WHO RESPECT ME, JUST BECUZ MY NAME IS “MOM.”

I LOVE ELEMENTARY SCHOOL–HECK, I TAUGHT ELEMENTARY SCHOOL! MY BABIES NEED 2 STOP GROWING! I’M NOT GOOD AT THIS TEENAGE THING, & IT’S REQUIRING ME 2 FIGURE OUT WHERE I STAND (AS A MOM) ALL OVER AGAIN…WHEN THEY WERE YOUNG, IT WAS HARD THEN, TOO, BUT I FOUND OUT THAT THEY JUST LIKED ME THERE, & LOVED ME REGARDLESS OF WHAT I WAS CAPABLE OF… LUCKILY, SOPH IS STILL YOUNG ENOUGH…SHE WAVERS, & HAS HER PRE-TEEN MOMENTS, BUT SHE USUALLY IS STILL HER MOM’S ADVOCATE!

BUT NOW IT’S A NEW BOAT. THE KIDS ARE GETTING OLDER, WHICH MEANS THEY NOT ONLY NOTICE MY WEAKNESSES, & ALTHOUGH I AM NOT A GREAT “TEEN PARENT,” I THINK I AM A DECENT PARENT (LUCKILY MY HUSBAND CAN HELP ME DO BETTER—A HUGE BLESSING 4 ME). YET I KNOW THE KIDS TAKE ADVANTAGE OF MY SITUATION—IT IS ONLY NATURAL! BUT IT DOESN’T HELP THE FACT THAT I CAN’T MAKE THEM DO ANYTHING, & CAN’T GIVE ANY SORT OF PHYSICAL PUNISHMENT (I’M JUST WORDS…& I CAN’T EVEN SCREAM, TO SHOW HOW MAD I FEEL–I CAN ONLY CRY, & THEY DON’T CARE IF I CRY!).

NOT THAT MY KIDS ARE BAD! I ACTUALLY AM SUPER BLESSED W/GREAT KIDS, SO WHEN THEY ACT UP, A LITTLE THING LOOKS BIG! BUT THEY ARE JUST EXPLORING THEIR INDEPENDENCE, & I KNOW THAT! THAT IS NOTHING DIFFERENT FROM OTHER TEENS, BUT MY KIDS HAVE AN ADDITIONAL, UNIQUE, ASPECT—A DIS-ABLED, HELPLESS PARENT! (IT IS VERY AWKWARD 2 DISCIPLINE, & THEN ASK 4 HELP!) LOL

SOMETIMES, TOO, I AM GLAD I HAVE A VOICE, SO I CAN FORCE THEM TO ACKNOWLEDGE, INSTEAD OF IGNORE, ME (“HI!,” “BYE!,” “GOODMORNING!,” “HOW ARE U?,” “HOW WAS YOUR DAY?,” “HAVE A GOOD DAY!”) BUT IT IS ALSO GOOD THAT ONLY THEY UNDERSTAND ME, WHEN I SAY THINGS LIKE “I LOVE U!” (YEARS AGO, I TAUGHT THEM A “LOVE SQUEEZE,” HOPING THAT WHEN THEY WERE TEENS, I COULD SQUEEZE THEIR HAND, & W/O SAYING A WORD, THEY’D KNOW I LOVED THEM…BUT, THAT BACKFIRED…I CAN’T GRAB THEIR HANDS UNLESS THEY ARE RIGHT NEXT 2 ME…& IT JUST ISN’T COOL BEING BY YOUR MOM, & EVEN MORESO BY YOUR DIS-ABLED MOM!, HOLDING HER HAND!)

ANYWAY, THE PBA MEDS CAME AT SUCH A GREAT TIME! THEY HELP SO MUCH W/EMOTIONAL THINGS, LIKE PARENTING! (WHAT TEEN WANTS A BAWLING/CRAZY MOM?) & WHEN ONE OF THE TEENS AT CHURCH INTERVIEWED ME FOR THEIR SPEECH CLASS, I DIDN’T BAWL, OR EVEN FLINCH, WHEN SHE ASKED ME SENSATIVE QQUESTIONS ABOUT THE DAY OF MY STROKE (I HAVE ALWAYS BAWLED B4, BUT I COULD EVEN JOKE ABOUT IT!)

& LAST WEEK, I WENT W/MK 2 HIS THERAPY/WORK CONFERENCE 4 LDS (LATTER-DAY SAINT/ “MORMON”) THERAPISTS IN UTAH. HOW AWESOME 2 NOT WORRY ABOUT MY PBA! I COULD TALK ABOUT EMOTIONAL STUFF I LEARNED, & I DIDN’T “IMPLODE” WHEN WE GOT 2 THE HOTEL ROOM, FROM HOLDING IN ALL MY PBA!

LAST YEAR THE WORK CONFERENCEFOCUSED ON PORN, BUT I STILL LEARNED STUFF, & WAS MENTALLY STIMULATED–& I NEVER AM MENTALLY STIMULATED! PLUS, THE FOOD WAS AWESOME, SO I AGREED 2 GO. TURNED OUT THE TOPIC WAS “FORGIVENESS.” AWESOME! (I EVEN TOOK HAND-WRITTEN NOTES!) ANYWAY, I HAVE A LIST OF 151 REASONS WHY I LOVE MK, & I REALIZED THAT THE LIST OF WHY I LOVE MK, HELPS ME BE MORE 4GIVING (THEY COMPARED 4GIVENESS 2 A BOAT W/HOLES, & INSTEAD OF SEEING HIS 1 BIG HOLE, OR THE MANY HOLES IN HIS BOAT, I SEE MY HOLES TOO)

I HAVE NOTICED, THOUGH, THAT I CRY MORE NOW…& IN UTAH, I HAD A LAUGHING EPISODE. I HAVE WONDERED IF I’M “GETTING USED TO THE PBA MEDS,” OR JUST IF WE HAVE STARTED 2 FORGET HOW HORRIBLE THOSE PBA EPISODES WERE. I DON’T THINK WE HAVE 4GOTTEN HOW IT AFFECTED OUR LIVES, JUST HOW SEVERELY IT AFFECTED US.

I ALSO THINK PART IS THAT I LET MY GUARD DOWN:
1. IN THE BEGINNING, I EMPLOYED MORE OF THE TRICKS I HAVE LEARNED 2 PREVENT CRYING, SIMPLY BECUZ THE MEDS MADE IT SO MUCH EASIER TO CONCENTRATE ON THOSE TRICKS…
2. IN THE BEGINNING, I HAD A MENTALITY, I THINK, WHERE I RESISTED PBA MMORE, SIMPLY W/WILL POWER, BELIEVING THAT I COULDN’T CRY, BECUZ THAT WAS WHAT THE MEDS WERE FOR! BUT EVEN THEN, I STATED THAT I STILL COULD HAVE PBA EPISODES, THEY WERE JUST SHORTER! (& IF I CRY/LAUGH, IT STILL IS MUCH SHORTER)
3. I LET MK & I TALK ABOUT THINGS THAT WERE TOO EMOTIONAL B4, SO THEY WERE EITHER NOT DISCUSSED, OR I EMAILED ABOUT THEM.

MY SPEECH & MY YW CALLING

IT’S BEEN A CRAZY SUMMER, BUT THINGS ARE SLOWING DOWN A BIT.
II HAVE 2 TELL U HOW MUCH THE SPEECH PROGRAM, SENTENCE SHAPER, IS HELPING ME, EVEN THOUGH THE SUMMER HAS BEEN TOO CRAZY FOR ME 2 USE IT! WHAT IT HAS TAUGHT ME IS THAT MY WORDS RUN TOGETHER, MAKING ME SOUND LIKE THE TEACHER ON CHARLIE BROWN! BUT IF I SAY THE WORDS SLOWLY & SEPERATELY, LIKE I DO FOR SENTENCE SHAPER, I MAKE SENSE!
MY DAUGHTER, SOPHIA, CAN SOMETIMES FIGURE ME OUT WHEN I SPEAK FAST (AMAZING), BUT IF SHE CAN’T, SHE HAS ME BREAK IT UP WORD-4-WORD, LIKE IN SENTENCE SHAPER. IN FACT, THE OTHER DAY, SHE WAS IN HER CLOSET & COULD NOT SEE ME, BUT WE HELD A CONVERSATION. IT WENT LIKE THIS:
ME: HI
SOPH: HI! HOW ARE U?
ME: GOOD. (PAUSE) DO
SOPH: DO
ME: YOU
SOPH:YOU
ME: KNOW
SOPH: KNOW
ME: I(F)
SOPH: IF
ME: YOUR
SOPH: YOUR
ME: (P)IANO
SOPH: AGAIN? (SHE CAME OUT TO SEE MY LIPS)
ME: (P)IANO
SOPH: WHAT WAS THE 1ST LETTER?
ME: I SIGNED “P”
SOPH: OH! PIANO! SAY IT AGAIN?
ME: PIANO (PAUSE) TEA(CH)ER
SOPH: TEACHER
ME: I(S)
SOPH: IS
ME: LD(S)?
SOPH: LDS
THEN SOPH ANSWERED MY QUESTION.
AT THE END OF MAY, I STARTED HAVING “NO SIGNING DAYS”, & I CAN ONLY TALK FOR 6 HOURS DURING A DAY/TIME THAT I PICK. I HAVE QUITE A BIT OF ANXIETY, SO I HAVE HAD A TOUGH TIME, BUT OCCASSIONALLY, I AM “ANXIETY-FREE” & HAVE EMPLOYED THIS SAME TECHNIQUE WITH MY OTHER 2 KIDS, & HUSBAND. IT WORKS EVERYTIME!
SOMETIMES I LIKE NOT BEING UNDERSTOOD, BUT FEEL SATISFACTION SAYING IT (LOL)…BUT IF I WANT 2 BE UNDERSTOOD (& I WASN’T UNDERSTOOD), I SLOW IT DOWN, & TRY 2 PAUSE BETTER BETWEEN WORDS! (I LEARNED THAT FROM SENTENCE SHAPER)
IN OTHER NEWS, IT HAS BEEN A LONG TIME SINCE I’VE READ THE ARTICLE I PUBLISHED IN THE LDS (MORMON) CHURCH MAGAZINE, THE ENSIGN (SEPT. 2008, Primary Songs Blessed Me):
http://www.lds.org/liahona/2008/09/primary-songs-blessed-me?lang=eng&query=jennifer+lynn

HOWEVER, THERE WAS A PART THAT STOOD OUT 2 ME:
“We may not always understand why the Lord has given us a particular assignment. Even so, we must trust the Lord and put our faith in Him and His promptings. “

WHEN I WAS GIVEN THE ASSIGNMENT 2 TEACH THE YOUNG WOMEN (YW), I HAD NO CLUE HOW I’D DO IT—I COULDN’T TALK & I COULD BARELY MOVE, BUT IT WAS MADE CLEAR 2 ME THAT THIS WAS AN ASSIGNMENT FROM THE LORD. & I HAD THE FAITH THAT GOD WOULD FIND A WAY TO MAKE IT WORK….& HE DID!

I DON’T THINK I’VE EVER ATTEMMPTED 2 EXPLAIN HOW I TEACH THE YOUNG WOMEN (12-18 YEAR OLD GIRLS), ONCE A MONTH, BUT I WANT TO DO SO NOW:
GIRLS VOLUNTEER 2 BE MY TRANSLATOR THAT MONTH. THE TRANSLATOR SPEEAKS & ACTS 4 ME (WRITING ON THE BOARD, HANDING THINGS OUT, CALLING ON PEOPLE TO ANSWER QUESTIONS, CLARIFING WHAT I AM TRYING TO SAY, OR ADD INPUT TO THE LESSON AS WELL.)

SINCE I WAS A TEACHER PRIOR 2 MY STROKE, & SINCE AM “HYPER-ORGANIZED,” I HAVE A VERY DETAILED, COLOR-CODED LESON PLAN. (WHAT THE TRANSLATOR SAYS/DOES IS 1 COLOR, WHAT I SIGN IS ANOTHER COLOR, ETC.) I TYPE OUT WHAT I PLAN TO SAY, BUT IT CAN CHANGE, SO THE GIRL’S REALLY DO READ MY SIGN LANGUAGE!

HOWEVER, WE HAVE A PRACTICE THE WEEK B4, SO THEY ARE FAMILIAR WITH THE LESSON, WE CLEAR UP ANY QUESTIONS OF WHAT THEY’LL BE DOING, & THEY KNOW MY MESSAGE. I ALSO TRY TO LIMIT MY SIGNING BY:
• USING THE SPEAKING MACHINE ON MY IPAD (IT SITS IN MY LAP, W/SPEAKERS ATTACHED 2 MY CHAIR) TO ASK QUESTIONS
• I OFTEN HAVE A POWERPOINT OR A VISUAL ID THT “SPEAKS” 4 ME
• THE GIRLS READ A LOT FOR ME (STORIES, SCRIPTURES, & SOMETIMES THINGS ON THE POWERPOINT SLIDES)
• AS MY SPEECH IMPROVES, I TRY 2 USE MY VOICE MORE

MY DAUGHTER, JESS, TURNED 12 IN FEB. SHE READS MY ASL FAST & CAN HELP IF THERE IS THE NEED, & SHE IS A “BACK-UP TRANSLATOR,” BUT SHE HAS ONLY BEEN NEEDED ONCE AS MY TRANSLATOR!

I ABSOLUTELY LOVE THIS ASSIGNMENT, & I AM LUCKY 2 WORK WITH THE GIRLS 1-ON-1, SO I GET 2 KNOW THEM! I AM SO GLAD THAT I ACCEPTTED THE ASSIGNMENT, EVEN THOUGH I HAD NO UNDERSTANDING OF HOW I WOULD ACCOMPLISH IT!

PBA

8/8 WAS MY BIRTHDAY, & I REALIZED THAT IN 10 YEARS, & BEFORE I AM 50 YEARS OLD, ANY OF MY 3 KIDS COULD MAKE ME A GRANDMA! GOOD GRIEF! I SURE DON’T FEEL THAT OLD, BUT I GUESS A GRANDMA IN A WHEELCHAIR WOULDN’T BE SO ODD…BUT I SECRETLY HOPE I’LL CONTINUE PROGRESSING, SO IT MAY BE A LITTLE UNUSUAL IF I’M STARTING 2 WALK OR SOMETHING! LOL

IN NEWS: ON MY B-DAY (A GIFT?), ZACH GOT HIS DRIVING PERMIT ON MY BIRTHDAY. I ADDED ANOTHER BLESSING 2 MY LIST OF BLESSINGS SINCE MY STROKE…I’LL LET U FIGURE OUT THE BLESSING!

ALSO, I CAME HOME FROM OUR THIRD TRIP AT THE START OF THE MONTH. WE DROVE YET AGAIN…MK HAS EARNED HIS “TRUCKER WINGS!” I AM SO IMPRESSED THAT HE COULD DO IT, & I FEEL SO LOVED, BECUZ I KNOW HE WOULD’VE PREFERRED 2 FLY, BUT DROVE 4 ME!

THIS TRIP WAS DIFFERENT. IT HAD SEVERAL THINGS THROWN AT IT, TRYING 2 “MUCK IT UP,” BUT MY MENTAL ATTITUDE WAS DIFFERENT, & I ENJOYED THE TRIP. THAT’S A BIG DEAL 4 ME.

I THINK THIS WAS HELPFUL IN CHANGING MY MENTAL ATTITUDE:

IN JUNE, I POSTED ABOUT HOW I FELL OUT OF MY WHEELCHAIR, BUT A TRAGEDY BECAME A BLESSING, BECAUSE I FOUND A NEUROLOGIST! AT THE TIME, I WAS UNAWARE OF HOW HUGE OF A BLESSING THIS WAS! NOW, I’M TEMPTED 2 SAY IT WAS WORTH IT!

1 MONTH AGO, JUST B4 THE CRUISE, THE NEUROLOGIST STARTED ME TAKE NEUDEXTA, THE NEW DRUG FOR PBA (PSEUDOBULBAR AFFECT/EMOTIONAL LABILITY/EMOTIONAL INCONTINENCE), I HAVE FORTUNATELY HAD NO SIDE EFFECTS.
& THE RESULTS HAVE BEEN LIFE-CHANGING, & HAVE SEEMED 2 ALLOW ME 2 PUT INTO PRACTICE THINGS I HAVE LEARNED FROM MK &/OR THE HOLY GHOST:

• I HAVE A MORE CAREFREE, RELAXED MOOD
• I AM MORE POSITIVE, LESS DEPRESSED, & LESS ANXIOUS
• MY BRAIN SEEMS “UNSCRAMBLED,” & LESS “CLOUDY”
• I STILL HAVE LAUGHING & CRYING EPISODES, BUT THEY ARE SHORTER & MUCH LESS FREQUENT!
• I HAVE ACTUALLY CONTROLLED A FEW EPISODES, & FELT THEM STARTING, BUT WAS ABLE TO STOP THEM!
• I HAVE BEEN ABLE TO FEEL THE SPIRIT MORE.
• I HAVE SEEN AN INCREASE IN MY SPEECH ABILITIES
• I CAN MOVE QUICKER & SEEM STRONGER

INTERESTINGLY, PBA TENDS 2 HAVE A “CYCLE,” SO THE MEDS SEEM TO HAVE A “CYCLE” AS WELL. (SO, 4 EX., I WAS SPEAKING AMAZINGLY WELL—FULL CONVERSATIONS, EVEN–ON OUR LAST VACATION, WHICH WAS AT THE END OF THE MONTH. I BELIEVE THERE ARE A LOT MORE REASONS FOR THIS, BUT AT THE START OF THE MONTH, TRY AS I MAY, I COULD HARDLY SPEAK A WORD! AS THE MONTH HAS PROGRESSED, I HAVE SPOKE BETTER FOR 15 MIN. HERE & THERE, & BY NEXT WEEK, I HOPE I AM SPEAKING ALMOST AS WELL AS LAST MONTH!)

ON THE RIGHT, UNDER “SPECIAL,” “I” WILL BE POSTING AN ARTICLE ON PBA THAT I’VE BEEN WRITING FOR YEARS (IF I EMAILED ABOUT PBA 2 SOME1, I COPIED IT & PUT IT THERE. MY OLD CAREGIVER CATEGORIZED IT, & I KEPT ADDING. THEN I CHANGED THE WORDS, SO IT MADE SENSE, & DID SOME MINOR EDITING…) . IT’S NOT PERFECT, NEEDS MORE EDITING, & I REPEAT A LOT, BUT IT’D TAKE ME EVEN LONGER 2 DO THAT, & I JUST WANTED 2 GET IT OUT THERE! (IT HAS BEEN LIKE 5 YEARS IN THE MAKING! LOL)

A PERSONAL NOTE: PBA IS AS MUCH A STRUGGLE 4 MY FAMILY & HUSBAND! I WANT 2 PUBLICALLY THANK THEM FOR DEALING WITH THIS! THE BATTLE IS NOT OVER, BUT I TRULY FEEL THAT THIS MEDICATION IS A BLESSING FROM GOD, FOR ALL WE HAVE ENDURED!

FAMILY REUNION

IN MY LAST POST, I MENTIONED HOW ON VACATION IN JUNE, I FELL OUT OF MY W/C & BEAT MYSELF UP PRETTY GOOD…PHYSICALLY, I’M SOOO MUCH BETTER–ALMOST COMPLETELY HEALED (2 MY POST-STROKE/”NORMAL” STATE)! HOWEVER, MENTALLY, I’M MESSED UP (THOUGH I’M SO FORTUNATE & BLESSED 2 HAVE MY HUSBAND BE A THERAPIST!).

I’VE ALSO SEEN THE NEUROLOGIST & I STARTED TAKING THE NEW DRUG 4 PBA, & IT IS AMAZING!!! I KNOW THERE HAVE BEEN COMPLAINTS ABOUT IT’S INCONSITENCY IN WORKING (WHICH I HAVE EXPERIENCED EPISODES/DAYS WHERE IT DOESN’T REALLY WORK, THOUGH THE “EPISODES” ARE MUCH SHORTER), BUT OVERALL I AM HAPPIER & MORE RELAXED, & WHILE I MAY FEEL CHOKED UP, I CAN WATCH A MOVIE W/O CRYING! IN FACT, I CAN ACTUALLY GO THROUGH A WHOLE ENTIRE DAY W/O A HUGE FLARE-UP!

I DON’T CARE IF I HAVE A FEW “EPISODES” STILL. 2 ME, HAVING WAY LESS EPISODES IS WONDERFUL, & A WELCOMED RELIEF—HOWEVER, I AM GRATEFUL 4 THE SKILLS I HAVE DEVELOPED, SO I CAN BETTER MANAGE MY PBA, WHEN THE PILLS DON’T WORK…!

PABLO PICASSO SAID “I AM ALWAYS DOING THINGS I CAN’T DO, THAT’S HOW I GET TO DO THEM.” I RECENTLY GOT HOME FROM OUR FAMILY REUNION: WE MET 4 A FEW DAYS AT UNIVERSAL (WHERE I RODE EVERY RIDE MY HUSBAND, MK, DID–EVEN THE INTENSE HULK ROLLERCOASTER!) & WENT ON THE DISNEY DREAM 5-NIGHT CRUISE 2 THE BAHAMAS. IT WAS THE BEST TRIP EVER–I WAS ACTUALLY NOT WANTING 2 LEAVE, & I NEVER MISSED CHECKING MY EMAIL…SO IT MUST HAVE GONE WELL!

I CAN FLY ON AN AIRPLANE, BUT PREFER NOT TO, SO I CAN TAKE MY BIG WHEELCHAIR, & TILT, FREELY USE A BATHROOM, NOT DEAL W/MY EARS, ETC. BUT MY HUSBAND DROVE 2 FLORIDA, 4 ME! (TALK ABOUT LOVE!) SO WE DROVE TO FLORIDA FOR 2 DAYS….

THE ROOMS WERE DOWNRIGHT AMAZING, & I FELT LIKE ROYALTY! DISNEY SURE KNOWS HOW 2 MAKE THINGS ACCESSIBLE (IT WAS LIKE NIGHT & DAY WHEN WE VISITED A BOHEMIAN ISLAND W/NO ADA LAWS), SO MY FAVORITE THING BY FAR IS THAT I COULD PUSH A BUTTON & THE DOOR OPENED! (NOT THAT I WENT PLACES ALONE–I’M TOO SCARED–BUT I HAVE AN AUTOMATIC BEDROOM DOOR OPENER, & HOTEL ROOMS DON’T HAVE THAT, SO I AM USED 2 LOSING INDEPENDENCE ON TRIPS–NOT GAINING IT!)

THE OTHER THING I LOVED WAS THE RAMP ON THE BALCONY (I CAN NEVER ACCESS BALCONIES!)…WHEN I NEEDED A REFUGE FROM THE COLD ROOM, OR JUST WANTED 2 WATCH THINGS GO BY, I COULD ACCESS A VIRTALLY COVERED PATIO, & FEEL THE WARM AIR & SMELL THE OCEAN!

I ADMIT THAT THERE WAS 1 DAY WHERE I WAS SAD ON THE TRIP. MAYBE MY PILLS WERE NOT HELPING, BUT I WAS FRUSTRATED ABOUT A FEW THINGS, & HAVING A “PITY PARTY.” BUT AFTER PAUSING AN AUDIO BOOK TO TAKE SOME TIME 2 THINK, THEN TALKING 2 MK & MY SISTER-IN-LAW, I EMPLOYED SOME RE-FRAMING (AS MK CALLS IT), & THINGS WERE BETTER AGAIN.

ON THE WAY HOME, WE GOT A FLAT TIRE, & WHILE I WAS OUT OF THE CAR, SO WE COULD CHANGE IT, IT STARTED 2 RAIN. 2 TOP IT OFF, I HAD 2 POTTY REALLY BAD, & NOTHING WAS AROUND FOR MILES! BUT WHAT WAS AMAZING WAS THAT NO1’S ATITITUDE FALTERED, & WE MANAGED 2 SEE THE BLESSINGS DURING THE TRIAL.

“The happiest of people don’t necessarily have the best of everything; they just make the most of everything they have.” Epictetus