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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

ANOTHER RECOVERY UPDATE

I WROTE ABOUT MY RECOVERY ON WEDNESDAY, & THOUGHT I’D SHARE AN UPDATE: SINCE THEN, MOST OF THE CUTS HAVE HEALED, MY LIP CUT IS TONS BETTER & SMALLER, & I ONLY HAVE 1 BLACK EYE! I HAVE BEEN EXHAUSTED 2 THE POINT WHERE I’M IN AUTOMATIC MODE & DON’T WANT 2 THINK. (IT STINKS 2 FEEL BORED, BUT FEEL TOO TIRED 2 THINK OF SOMETHING 2 DO!) I HAVE NOT EVEN HAD THE ENERGY NEEDED 2 VOCALIZE. (BUT I SEEM BETTER 2DAY—AT LEAST I’M THINKING!) I THINK I HAVE BEEN HEALING SO FAST, THAT MY ENERGY HAS BEEN PUT THERE! SO, THXS 4 THE PRAYERS!

THE WAY I’M HEALING AMAZES ME DAILY! I HAVE INJURIES FROM ALMOST 20 YEARS AGO THAT ARE STILL SCARS & TOOK YEARS 2 HEAL! IN FACT,, WHEN I HAD MY STROKE, I HAD 2 BROKEN TOES FOR A YEAR, & THEY PROBABLY ONLY HEALED FROM LACK OF USING MY FOOT!

ABOUT THE HOSPITAL INJURIES:
1. I MENTIONED HOW I WAS A HUMAN PINCUSHION, WHERE THEY NOT ONLY POKED EVERY ELBOW & WRIST & A BICEP, BUT WIGGLED THE NEEDLES AROUND, SEARCHING 4 A VEIN–DESPITE KNOWING THAT I WAS ALREADY A HARD STICK, & DEHYDRATED (WHICH MAKES IT EVEN HARDER 2 FIND A VEIN)! & I ENDED UP DRINKING ORALLY ANYWAY! (BUT, AT LEAST I WASN’T STRIPPED NAKED, POKED IN THE GROIN, & LEFT NAKED—WHICH HAS BEEN DONE!) SSOMEHOW I STILL HAVE BBRUISES FROM THIS! LOL
2. THEY PUT ME ON THIS WOOD BOARD 2 KEEP MY BACK FLAT, BUT MY BACK WAS CURVED, W/MY HIPS ANGLED SO MY BODY WEIGHT WAS ON MY TAILBONE. THE AVERAGE PERSON COULD MAKE THE NECESSARY MINOR ADJUSTMENTS, BUT I NEEDED HELP, WHICH THEY REFUSED. DESPITE BEING A WIMP IN MY CHILDHOOD, I AM NO LONGER A WIMP (-I HAD 3 BABIES W/NO EPIDURAL, I WAS AWAKE & FELT MY THROAT SLICED WHEN I HAD TRACHE SURGERY, ETC.) SO I ENDURED 30-45 MIN. THAT WAY, AS WE DROVE TO THE HOSPITAL, WINCING W/EVERY BUMP. BUT ONCE WE ARRIVED AT THE HOSPITAL, & THEY MOVED & JOSTLED ME, I WAS IN AGONY! I STARTED 2 CRY, & MY PBA TOOK OVER & I SCREAMED! I WAS TOLD THAT I COULDN’T COME OFF THAT STUPID BOARD UNLESS I CALMED DOWN, WHICH I CAN’T DO (PBA MEANS THAT I CAN’T CONTROL MY EMOTIONS!) LUCKILY, JESS WAS THERE, SO I SIGNED THAT I HAVE PBA & CAN’T CALM DOWN, BUT IF MY BUTT WAS MOVED DOWN, I’D STOP CRYING! THE STUPID LADY—U’D THINK SHE’D KNOW WHAT PBA WAS, BUT SHE WAS CLUELESS & STUBBORN ABOUT NO1 MOVING ME, SO MY TAILBONE GOT BRUISED. I CAME TO THE HOSPITAL TO BE HELPED, BUT I WAS HURT AS BAD AS WHEN I FELL!

SO ONE MAY ASK, “WHERE WAS YOUR GOD THEN?” WELL, I BELIEVE HE WAS RIGHT THERE. I HAVE BRUISED MY TAILBONE BEFORE, & IT CAN BE TONS WORSE (B4, MY BUTT HAD 2 USE A DONUT PILLOW 4 MONTHS, & I DON’T NEED 1 NOW!) BUT WE ALL HAVE FREE AGENCY 2 CHOOSE, SO THE DOCTORS & NURSES MADE THEIR CHOICES, & THEN THE CONSEQUENCE FOLLOWED, BUT GOD HELPED ME—WHETHER 2 LESSEN THE INJURY, OR WITH THE ABILITY 2 FIGHT THE PAIN.

MY RECOVERY SO FAR…

MY INBOX HAS BEEN FLOODED W/WELL-WISHES, & SINCE I CAN’T TELL U ALL HOW I AM DOING, I JUST DECIDED 2 POST ABOUT MY RECOVERY SO FAR:

I AM JUST LETTING MY INJURIES HEAL & NEED REST. IF U WANT 2 DO SOMETHING 4 ME, U CAN PRAY!

I CAN’T GET OVER HOW I’M HEALING SO FAST. A FEW SPOTS WERE INFECTED, BUT MK ROCKS AS MY DOCTOR. (I SWEAR HE HAS DONE MORE 4 ME, THAN THE HOSPITAL OR ANY DOCTOR!) MK DEFINITELY HAS AIDED IN MY SPEEDY RECOVERY. & IS IT A COINCIDENCE THAT ISTARTED 2 HEAL ASTER WHEN PEOPLE KNEW & POSSIBLY ALL THESE PRAYERS ARE WHEN I STARTED HEALING SO FAST?!?)

MY BROKEN NOSE ONLY HURTS IF TOUCHED! UNTIL 2DAY, IT HAS BEEN HARD 2 BREATH, & I THOUGHT THE SWELLING MAY HAVE GONE DOWN, BUT I SWEAR MY NOSE IS LESS CROOKED TOO! & I DON’T EVEN FEEL THE BLACK EYES THAT CAME FROM THE BROKEN NOSE… I THINK THE LORD IS HELPING ME AS I HEAL BY TAKING AWAY THE PAIN, BECUZ MY PAIN IN NO WAY MATCHES WHAT I SEE IN THE MIRROR!

I ONLY HURT ON MY LIP & NECK:

I WAS CHECKING OUT MY INJURIES WED. NIGHT, & ON THE INSIDE OF MY LIP IS A DECENT CUT–OPPOSITE A CUT ON THE OUTSIDE OF MY LIP , THAT SUPPOSEDLY WENT THROUGH MY LIP. HOW I KEPT MY TEETH IS A MYSTERY–IN FACT, MY 2 FRONT TEETH TINGLED, SO IT WAS DEFINATELY A MIRACLE THEY NEVER HURT OR FELL OUT.
AS 4 MY NECK, THERE’S JUST A STUBBORN KNOT, LIKE I SLEPT ON IT WRONG!

SLEEP HAS BEEN AN ISSUE, & I TEND 2 GET EXHAUSTED IN THE AFTERNOON…& TUESDAY I FELT LIKE A TRUCK HIT ME, BUT I GOT MY PAIN MEDS (I JUST HAD TYLENOL UNTIL THEN), & THEN I SLEPT BETTER!