Recovery

WED.

I'M BACK! LOL GLAD THE NEW SCRAPBOOK PGS. APPEARED WHILE I WAS GONE, SO THEE WAS SOMETHING NEW LAST WEEK! I KNOW THE 11ST GRADE PGS. HAVE PREVIOUSLY BEEN POSTED, BUT THE NEW PGS. SHOW HOW I ADAPTED 8.5X11 PGS. MADE 4 JESS’ CLASS INTO 12X12 PGS. 4 HER BOOK.ANOTHER IDEA: IF U WANT 2 USE YOUR REG.-SIZE PRINTER BUT HAVE 12X12 BE THE FINAL PRODUCT, TRY PRINTING OUT 8.5X11 PAPER & ATTACHING IT TO 12X12 TRADITIONAL CARDSTOCK PAPER.

I ALSO MADE SOME REUNION PGS. SAT. SINCE I HAD TIME. I BOUGHT SOME SCRAP. KITS AT DISNEY–I CAN’T SCAN 12X12 PGS., SSO SOME TRA-DIGITAL PGS. WILL NOT BE POSETD.

AT THE REUNION IN FLORIDA, I DIDN'T HAVE INTERNET, BUT MARK TOTED MY COMP. THERE (ALONG W/3 WHEELCHAIRS—I DON'T PACK LIGHT: 1. ME IN MY POWER CHAIR TOOK PLACE OF THE PASSENGER SEAT, 2. MY SHOWER CHAIR; INSTEAD OF THE TRAVEL 1 I HAVE THAT WORKS, BUT FREAKS ME OUT, & 3. MY MANUAL CHAIR 4 RIDES AT DISNEYWORLD). I CAN SPEND 10-11 HRS. A DAY ON MY COMP. (SINCE IT HAS EVERYTHING: MY JOURNAL, MY HOBBY, MY WAY 2 COMMUNICATE W/OTHERS, ETC.), & ALTHOUGH I HAD MORE THAN ENOUGH 2 DO W/O INTERNET, I NEVER FULLY REALIZED–UNTIL I COULDN'T DO IT—HOW A LARGE CHUNK OF THAT TIME WAS DEVOTED 2 MY CALLING AT CHURCH & MY LIMITED INTERACTION W/THE WORLD (IT WAS SOMETIMES VERY LONELY 2 RESORT 2 1-WAY COMMUNICATION—FAMILY DINNERS WERE SOMEWHAT MY RELEASE). THOUGH I HAD PLENTY 2 DO W/O INTERNET (& EVEN MADE A DOCUMENT 2 ANSWER THE TON OF SOME OF MY UNANSWERED EMAILS), AFTER A FEW HRS., ESP. SINCE I WAS "ON DISPLAY" ON A BIG SCREEN TV & HAD NO PRIVACY, SO I WWAS LIMITED EVEN FURTHER IN MY ACTIVITIES, I WAS BORED, & C-ING ME ON THE COMP. WAS MIS-LEADING 2 OTHERS & RESULTED IN LESS INTERACTION. HOWEVER, MY COMP. WAS SET-UP LUCKILY BY WED., 6/20 (I WAS OFF 6/15 & OTHERWISE I'D HAVE HAD 4 CONSECUTIVE DAYS OF WATCHING TV, & THOUGH I HAD ANTICIPATED IT & JUSTIFIED IT WAS ONLY FAIR SINCE MARK SET ASIDE 4 DAYS OF HIS LIFE 2 DRIVE ME FROM TEXAS 2 FLORIDA,I WOULD'VE GONE CRAZY JUST SITTING, NOT EVEN TALKING 2 MYSELF OR ACCOMPLISHING ANYTHING). I HAD PLENTY 2 DO, BUT IT WAS HARD 2 C W/A LOWER MONITER. & THOUGH MOST KNEW ASL, I'D RATHER INTERACT & COMMUNICATE VERBALLY, BUT I COULDN'T. EVEN IF SOME1 COULD SIGN, THOUGH IT HELPED, I WAS STILL LIMITED & OFTEN EXCLUDED (DEFINITELY NOT ON PURPOSE, BUT ONLY SO MUCH CAN BE DONE W/SOME1 LIKE ME). THE REUNION ENDED SUNDAY, BUT 4 ME, IT ENDED TUESDAY (& I WAITED 2 WATCH A FAMILY SLIDESHOW & PLAY A GAME—DAD-ISM BINGO—WHICH MARK & I MADE 4 FRI.).

SO, I TYPED A LONG POST (OF MISC. THOUGHTS) WHILE I WAS ALONE, 4 WHEN I RETURNED:

FUNNY STORY:
THURS. NIGHT I’D PREVIOUSLY ASKED SOMETHING (WHILE MY FAM. RESTED FROM THE PARK ) 4 MISSY 2 GET. SOMETHING 4 ME. I HAD TRIED ALL DAY, BUT IT ENDED UP SHE COULDN’T DO ANYTHING UNTIL RT. B4 THE PARK WAS CLOSING. B4 SHE LEFT, SHE CHECKED ON ME–I WAS W/O POWER 2 CONTROL MY CHAIR & SHE HADN’T LEARNED HOW 2 TURN OFF THE BACK CONTRO;. I WAS JUST WATCHINNG TV, WAS STUCCK TILTED BACK, & WASN’T GOING ANYWHERE. I REALLY WANTED HER HELP AT A STORE THAT’D SOON CLOSE & KNEW I’D BE 2 SLOW 2 FINGERSPELL HOW 2 TURN OFF THHE BACK CONTROLLER 2 RETURN POWER 2 ME. I SHOULD’VE TOLD MISSY 2 GIVE MOM THE KEY & DO IT—SHE WAS THERE & KNEW HOW, BUTTT THEN THERE’D BE NO FUNNY STORY! I TOLD MISSY 2 GO. SHHE COMMENTED SHE DIDN’T WANT 2 LEEAVE ME, UNABLE 2 MOVE. I LAUGHED SOOOOOOOOO HARD! REALLY, I COULDN'T MOVE ANYWAY & WHERE WAS I GOING ANYWAY? AS LICK WOULD HAVE IT, W/IN 5 MIN., (ENOUGH TIME 4 HER 2 LEAVE THE HOTEL), AN ALARM WAS TRIGGERED IN THE HOTEL! I FIGURED IT WAS DONE BY A PUNK KID, BUT HAD VISIONS HOW FUNNY IT’D BE IF WE HAD 2 LEAVE ROOMS & AMIDST CHECKING IF ALL HAD LEFT, I WAS FOUND, UNABLE 2 MOVE OR TALK! HOWEVER,, I KNEW MY MOM WAS FREAKING OUT NEARBY 4 BOTH OF US (SO I COULD C THE HUMOR), & IF IT WAS REAL, SHE’D DO ALL IN HER POWER 2 GET 2 ME! HOWEVER. IT WAS A FALSE ALARM, AS I’D GUESSED. MISSY’S COMMENT GAINED CREDIT, BUT STILL MADE ME LAUGH!

I DOUBT THE INDEPENDENCE I DO HAVE IS KNOWN FULLY (EXCEPT BY MARK, WHO CREATED IT), SO IT'S NOT KNOWN WHAT ALL I GIVE UP WHEN I LEAVE:
1. MY ELEVATOR BUTTON IS ON THE CORRECT SIDE SO I CAN ACCESS IT & THE DOORS SELF-OPEN, SO I HAVE FREE ACCESS 2 BOTH FLOORS OF MY HOUSE.
2. MY BEDROOM DOOR (& THE FRONT DOOR, WHICH'S BROKEN, BUT I CAN OPEN SINCE WE ENSURED I COULD DO THE HANDLE) HAS A REMOTE 2 OPEN/CLOSE, WHICH'S VELCROED 2 MY CHAIR.
3. THERE IS A CAMERA IN R TOY ROOM, FACING R SPA, & FRONT DOOR, WHICH I CAN C FROM R UPSTAIRS TV.
4. I CAN ACCESS R PHONE, WHICH PLAYS A SPECIAL SONG IF MARK CALLS, &, ON SPEAKERPHONE, I HAVE A "CODE" 2 ANSWER YES/NO W/BEEPS.
5. R HOUSE LTS. R LOWER & WHERE I CAN ACCESS FROM THE RT.
6. WE HAVE WIDER DOORWAYS & HALLS.
7. REMOTES R MEANT 2 BE IN A DRAWER IN MY ROOM THAT I CAN ACCESS, BUT THE KIDS OFTEN LEAVE THEM IN THE MIDDLE OF THE BED. BUT, OCCASIONALLY, I CAN MOVE THE COMFORTER & GET IT FROM THE MIDDLE OF THE BED. (I'M SO PROUD IF I DO!)
8. I HAVE A COMP. TABLE SO I CAN GO ON THE COMP. ANYTIME I WANT W/O THE HELP OF NEEDING MY COMP. TRAY. MY MOUSE & KEYBOARD R ALSO WIRELESS, SO I'M NOT :CHAINED: 2 THE WALL.
9. LUCKILY, I CAN TAKE THIS W/ME: ONCE, I MENTIONED THE POCKETS OF MY WHEELCHAIR. I OFTEN HAVE KLEENEX 4 MY CRYING & DROOLING EPISODES. ONCE I EVEN HAD CANDY IN IT I COULD ACCESS, BUT IT'S AN AWFUL TEMPTOR.
10. I CAN WEAR A PORTABLE ARM REST & FEED MYSELF. I HATE IT 4 MEALS, BUT LOVE IT 4 SNACKS, LIKE POPCORN OR CANDY (A RARE INDULGENCE) 4 A MOVIE.

AT THE REUNION, WE HAD AN ACCESSIBLE HOUSE, SO I HAPPILY FOUND ACCESS 2 THE ROOMS I NEED OR WANTED, & ENJOYED WIDER DOORWAYS & HALLS. BUT I BET IT'D NEVER BE GUESSED WHAT MADE ME HAPPIEST: THE POTTY GRAB BAR 4 THE TOILET WAS ON THE CORRECT SIDE SO I COULD USE IT! I ALSO NEVER REALIZED THIS INDEPENDENCE AT HOME: HAVING MY BEDROOM TV DOWN LOW & VIRTUALLY UNOBSTRUCTED, SO EVEN IF I CAN'T CHANGE CHANNELS, I CAN TURN IT ON. WHILE I LOVED THAT THEY MOUNTED A TV ON THE BEDROOM WALL (SO I COULD C EVEN ON MY BACK ON THE BED, ALTHOUGH I'VE BECOME FANTASTIC AT RECOGNIZING VOICES & PICTURING MY OWN ACTING), IT WAS HORRIBLE IF ALL ASL-SPEAKING PEOPLE LEFT THE HOUSE W/O A TV TURNED ON OR MY COMP. TRAY ON! (I CHALENGE ANY1 TO SIT IN A ROOOM W/PEOPLE U CAN'T TALK 2 & HAS NO COMP. OR TV–JUST SIT & NOT TALK).

FINDING A FAM. BATHROOM SO MARK CAN HELP ME, IS AN EXPERIENCE. I'VE LEARNED 2 ALLOW 4 "SEARCHING TIME." SO, I WAS IMPRSSED W/ MARK'S STROKE OF GENIOUS 2 FIND A BATHROOM (WHILE DRIVING THROUGH LOUISIANNA) AT A HOSPITAL. BUT THE SEARCH WAS IRONICALLY HARDER THAN A STOP AT A JC PENNEY STORE ON THE PREVIOUS TRIP 2 OKLAHOMA!

MY CHAIR CAN BE PUT IN PLACE OF THE PASSENGER SEAT, BUT I NEED ENORMOUS AMOUNTS OF TRUST 2 LEAVE, WHICH I LUCKILY I LEARNED THE BEGININGS OF THROUGH LIFTS IN DANCE.

GREETINGS CAN BE AS HARD AS GOODBYES W/PBA. OFTEN, I JUST AVOID THEM OR, IF I DO THEM, I DISTANCE MYSELF 2 AVOID CRYING. I KNEW I'D C ¾ OF MY FAMILY AGAIN W/IN THE WEEK—NOT SOMETHING 2 CRY OVER—YET, IHAD 2 FIGHT TEARS! & I WASN'T SAD 2 BE LEAVING!

TIME

A FELLOW STROKE SURVIVOR SAID: RECOVERY DOES HAVE IT’S SIDE EFFECTS. MORE IS EXPECTED OF YOU AND YOU RUN OUT OF TIME TO SPEND ON THE COMPUTER.
I BELIEVE IT! I THINK I’M STARTING ON THAT PATH. MY WEBSIITE PUSHES ME 2 THANKFULLY WRITE, AS MY POSTS DOUBLE AS JOURNAL ENTRIES! I USED 2 STRESS ABOUT UNWRITTEN EMAILS. NOW I PICK & CHOOSE WHAT GETS A RESPONSE (NO OFFENSE IF I DON'T RESPOND 2 SOME1, BUT I HAVE 2 PICK BECAUSE MY 1 FINGER CAN ONLY DO SO MUCH!) & MY GOALS I SET R “2 WRITE 1 PARTICULAR EMAIL” SO I FEEL GOOD ABOUT MY ACCOMPLISHMENTS THAT DAY & CAN HAVE THE FREEDOM 2 RESPOND 2 AN UNEXPECTED EMAIL! A GOOD DAY IS IF I READ ALL MY NEW EMAIL & RESPOND 2 JUST 1 EMAIL! I HAVE EMAILS SAVED 2 WRITE & SEND FROM LAST AUG.! (SORRY IF U GET 1—I'M SLOWLY DELETING WHERE I CAN!) I WISH SO BAD I TYPED W/MORE THAN A FINGER SO I WAS FASTER OR COULD CALL!

WE CURRENTLY HAVE VISITORS—MARK'S PARENTS & A NEPHEW. I’VE REALLY ENJOYED THEM BEING BEING HERE & HAVE TAKEN ADVANTAGE OF IT! IT’S AMAZING HOW MUCH TIME IS DEVOTED DAILY 2 FIA PLAYING, LISTENING 2 STORIES, ETC.–I’M SURE IT ISN'T REALIZED, SINCE I'M OFTEN ALONE, SOME1 LIKE POOR MARK OR CARA (WHO'S MY HANDS & FEET) GETS INNUNDATED W/EMAILS FROM ME ON A GOOD DAY (SOMETIMES I'VE BEEN WRITING A SENTENCE HERE & THERE, ON SEVERAL EMAILS 4 DAYS, THEN A GOOD DAY HITS & THEY GET ALL THOSE EMAIKS), & I SEEM 2 ALWAYS SIT AT THE COMP., BUT A LOT GOES ON THAT IS PROB. NOT AWARE ARE OF! SO I’M TOTALLY TAKING ADVANTAGE OF HAVING CO. 4 MY KIDS HERE! I GUESS THIS IS MY VACATION! I DESPERATELY NEEDED IT!

NEXT WEEK MY FAMILY HAS A REUNION AT DISNEYWORLD, SO I'M UNSURE IF I'LL WRITE, BUT MAYBE I CAN POST SOME SCRAP. PGS. (2 WERE A JOKE & I HAD 2 HURRY & DO THEM & 2 I MADE WHILE TEACHING DIGI. SCRAP.). MARK & I R IN CHARGE OF THE REUNION & MARK'S KINDLY DRIVING SOLO 2 ORLANDO! (FLYING IS HARD ON NE 4 SEVERAL REASONS I WON'T GO INTO!)

SAT.

A WHILE AGO, FIA PROCLAIMED, "I'M SO GLAD I HAVE A MOM!" MARK'S RESPONSE WAS PRECISELY WHAT I WAS THINKING: "'4 A WHILE, U ACTUALLY HAD A CHOICE!"

I HAVE THOUGHT ABOUT THAT COMMENT. IS SHE STILL GLAD SHE HAS A MOM, IF I CAN'T TALK, WALK, ETC. ? OBVIOUSLY, YES. IS IT JUST BECAUSE I SIT W/HER WHILE SHE PLAYS COMP.. OR PLAY THINGS LIKE T"EA PARTY" MORE, SO SHE GETS MORE "QUALITY TIME?" IS IT JUST HER NUTURING NATURE? OR DOES SHE EVEN KNOW ANY BETTER?

SOON AFTER HER COMMENT, WE HAD A BREAK-THROUGH. MARK WAS BUSY AT DINNER & ASKED ZACH 2 GIVE HIS MOM WATER 2 DRINK. I WAS SHOCKED ZACH SAID OK (& HE DID REALLYWELL—BETTER THAN SOME, BECAUSE IT IS AN "ART FORM"). BUT BOY DID BOTH GIRLS BEG 2 DO IT! I THINK THEY WERE GLAD 2 HAVE A MOM THEN.

2DAY WE DID SWIM THERAPY. HAVE I MENTIONED "STAND UP HUGS?" THINK SO, BUT IN CASE: THE KIDS LINE UP IN THE POOL 2 GET A HUG FROM MOM, WHO'S STANDING. REALLY, I STAND & DO THERAPY ON LAND 2, BUT THE POOL IS SPECIAL & THE KIDS LOVE IT. I THINK THEY ARE GLAD 2 HAVE A MOM THEN, DESPITE EVERYTHING.

STROKE SHOW ON SAT.

REMEMBER I SAID I WAS TIVOING A STROKE SHOW SAT.? I DID. HERE'S MY THOUGHTS:

THIS WAS MENTIONED:
F = FACE Ask the person to smile. Does one side of the face droop?
A = ARMS Ask the person to raise both arms. Does one arm drift downward?
S = SPEECH Ask the person to repeat a simple phrase. Does the speech sound slurred or strange?
T = TIME If you observe any of these signs, then it's time to call 9-1-1.

THAT'S NICE & EVERYTHING, BUT I DON'T C IT AS VERY PRACTICAL. I'M ALL 4 EDUCATING YOURSELF, BUT I MUCH PREFERED THE ADVICE THAT THIS CAN HAPPEN WHEN U R YOUNG. I'M ON A YOUNG STROKE STROKE SURVIVOR SUPPORT GROUP, & 24 SEEMS THE COMMON AGE 4 MANY "STROKEES." HOWEVER, WHEN WE COME 2 THE ER, DOCTOR'S COMMONLY SAY, "(S)HE'S TOO YOUNG TO HAVE A STROKE!" WWHATEVER. WHEN WILL THEY LEARN???

MARK HAD IMMEDIATELY RECOGNIZED THE SIGNS & ACTED–& ALL FROM A PHONE CALL, YET DOCTORS KEPT LOOKING & WASTING VALUABLE TIME, CERTAIN I WAS TOO YOUNG TO HAVE A STROKE. I, HOWEVER, WAS EXTREMELY UNEDUCATED & CLUELESS WHAT WAS HAPPENING. IT HAPPENS FAST—1 MIN. U R FINE, THE NEXT U R NOT. IT'S NOT LIKE I COULD'VE USED "F.A.S.T." I GUESS U COULD USE IT IF U WERE THERE EXACTLY WHEN IT HITS, BUT I THINK IT WAS OBVIOUS 2 EVEN MY YOUNG GIRLS THAT MOM WAS "NOT OK."

I COULD RELATE 2 SEVERAL PARTS OF STORIES FROM STROKEES ON THE SHOW, BUT IT SURPRISED ME 2 NOT HEAR ANOTHER COMMON PHRASE UPON WAKING AFTER U HAVE STROKED—"I WAS IN A NIGHTMARE." (IT'S SO SUR-REAL, I THINK A YR. WENT BY W/ME WANTING 2 "WAKE UP.") PERHAPS BECAUSE THEY INTERVIEWED MILD STROKE CASES, "FIT 4 TV." NO1 W/A TRACHE SCAR OR IN A W/C WAS WAS INTERVIEWED—EVERY1 SEEMED 2 HAVE A "MIRACULOUS RECOVERY," HAD IT HARD, BUT WAS FINE. THIS INFURIATED ME—2 TRIVIALIZE MY DAILY LIFE! THIS SHOW WAS 2 EDUCATE, SO WHY NOT SHOW THE VAST SCOPE 4 RECOVERY OR THE RECOVERY STAGES? I, PERSONALLY, HOPED 2 HEAR OF SOMETHING NEW ABOUT THE RECOVERY. I WAS DISSAPPOINTED.

1 QUES. REMAINED THOUGH: HOW 2 EDUCATE PEOPLE LIKE ME—B4 MY STROKE, I WOULD HAVE FLIPPED BY & NOT CHOSEN 2 WATCH, & DEFINITELY WOULDN'T HAVE TIVOED IT!

Epictetus

"Make the best use of what is in your power, and take the rest as it happens."
Epictetus , A Greek Philosopher

I HEARD THIS QOTE & LOVED IT. SO MUCH IS A MATTER OF PERSPECTITIVE. I'D BE LYING IF I SAID I NEVER HAVE A "PITY PARTY." IT'S EASYIN MY LIFE 2 FOCUS ON INABILITIES & SHATTERED DREAMS—BUT I DO TRY 2 MAKE THE MOST OF WHAT I CAN DO. IN FACT, I TEND 2 BE 2 OPTOMISTIC OF MY ABILITIES, SO I'M INCREDIBLY BUSY. (I TEACH DIGITAL SCRAP. AT MY HOME, I DO TONS 4 THE ACTIVITY DAY GIRLS AT MY LDS CHURCH, CORRESPONDING W/PEOPLE IS IMPORTANT 2 ME, POSTING ON THIS BLOG/WEBSITE—REMEMBERM EVERY LETTER IS TYPED 1 AT A TIME, I STILL HAVE FOUND—THOUGH IT CAN BE TRICKY—A WAY 2 BE MOM, WIFE & SISTER, ETC.) "It’s not what happens to you, but how you react to it that matters."
Epictetus