GOD UNDERSTANDS WHY I AM HERE

LORD WHY 

CAN'T PEOPLE UNDERSTAND

 I REALLY HURT TODAY

  

 BECAUSE IT IS PEOPLE

  

 CAN'T THIS DISEASE BAFFLE THE BRIGHTEST OF THESE

 IT TAKES A LITTLE WORK

  

 TO SEE  THE CHANGE

  LIKE THIS IT TAKES LONGER

 FOR ME TO GET  BRAIN WAVE 

 GOING TO MY FEET AND  HANDS

 BEFORE MY FEET CAN WALK

  OR MY HANDS CAN WORK

  

SO I AM SLID  INTO MY CHAIR

  

AND A MISSED CALCULATED

I WAS NOT TRYING TO MAKE

  

 THREE POINT TURN

 MY HAND DID NOT GET

 CONNECTED TO THE TOP OF MY BRAIN

 AND MY HAND WAS OUT OF CONTROL

 WHEN I SETTLED DOWN

 I COULD CONTROL  THE WHEEL CHAIR FINE

 DR. LAURIE WOULD SAY 

  THAT IS WHAT SPASTIC AND ALS DO THAT

   THEN THEY BECOME

MORE STIFF ALL IN THE SPACE

OF ONE MINUTE

I DON'T KNOW WHEN I HAVE CHANGES

 TO COMMUNICATE THIS

  

 BECAUSE I HAVE TO PROCESS FIRST

IN MY FRONTAL LOBE

 WHEN YOU HAVE TO PROCESS THROUGH MY BRAIN

 MANY FRIENDS WOULD SAY WHY   

THICK HEADED

, 

                     I WOULD SAY I DON'T KNOW                 

 YOU SEE THIS IS A BAFFLING DISEASE
 
 AND I TO SPECIAL CARE

 TO BE RESPONSIBLE FOR MY OWN
 
 LIMBS

 BUT LIVING IN REHAB

 I FEEL THREATENED

IF THEY DON'T KNOW WHAT I NEED.

 I GUESS WHEN I TAUGHT MY KIDS

 HOW TO DRIVE

 I ALWAYS SAID

  YOU MUST ANCIPATE

WHAT THE OTHER VEHICLE WILL DO.

 ANTICIPATORY ACTION THAT YOU TAKE

  WHEN THE OTHER PERSON DOES NOT DO.

MY SONS WOULD SAY,

I DON'T WANT YOU SAY THAT

 WORD EVER AGAIN

 AND I WOULD SAY

ANTICIPATORY

 WE WOULD GO ROUND AND ROUND

  MAYBE I SHOULD TRY THE WORD ON PEOPLE

WHO WORK WITH ME

THEY COULD BE MORE ANTICIPATORY
 
 THE ALS WRECK

 TO KNOW WHETHER  I AM

SPASTIC OR RIGID

BE ABLE TO OR NOT TO EAT

 I HAVE BEEN EATING THREE MEALS A DAY

 DON'T YOU THINK THEY  SHOULD

  KNOW BASICS

 NOTHING TO DRINK BUT,

ICE WATER ICE

 IT WOULD BE HELPFUL WITH ALS

PEOPLE COULD READ LIKE A BOOK.

IT IS COMING TO A POINT WHERE I CAN'T WRITE

  THEN I CAN'T TYPE

 OR MOVE ANY PART OF MY BODY

  I WILL ONLY BE ABLE TO COMMUNICATE WITH MY EYES


 GOD UNDERSTANDS WHY I HAVE ALS

 AND

WHY YOU ARE PUT TOGETHER WITH ME

 GOD UNDERSTANDS.US









   
                    

  

 

DEAR LORD THEY KNOW NOT WHAT THEY DO.

MY DEAR LORD CAN YOU GUIDE ME

I HAVE ALS

 AS IF YOU DON'T KNOW GOD    

 WELL LORD IT  IS THIS ALS THAT HAS GRABBED ME IN EVERY WAY

 A REAL TRICK

    

 TO GET WHAT YOU NEED

  

WHEN I CAN'T TALK

 MY HANDS ARE TOO WEAK TO SAY

 STOP, WAIT, LET ME GET MY BARRINGS

I CAN'T STAND UP STRAIGHT 

 AND FALL OVER

LANDING CROOKED ON BED

CHAIR AND TOILET.

IT IS VERY DIFFICULT FOR ME TO MOTION TO THEM

WHAT I NEEDED

 THEY CAN'T UNDERSTAND WHAT  I NEED

 NO ONE BOTHERS TO EVEN KNOW I'M

  

 TRYING  TO TELL THEM SOMETHING

 GOD WHY IS THIS DISEASE SO ALL

 CONSUMING?

 WHY CAN'T I REACH PEOPLE

 AT THE TIME I NEED IT

 LIKE WHEN MY FOOT DOESN'T MOVE

 AND TURNED AROUND FACING THE WHEEL CHAIR

 I JUST HAVE TO STRUGGLE TO MOVE MY FOOT.

 KNOW ONE SEES OR THINKS IT HURTS

  

 I AM STIFF NOT DOUBLE JOINTED.

  

 ALS HITS DIFFERENT PEOPLE DIFFERENTLY

  GOD HOW LONG HAVE SPENT CARING ABOUT OTHERS

WHY  GOD CAN'T THEY SEE I HURT.

 I HAVE MUSCLES THAT ARE GONE

 AND WHEN I SIT IN A WHEEL CHAIR AND THE BACK HAS BEEN LEFT BACK

 IMMEDIATELY LAUGHING WHEN I FALL

 THEY SIT ME ON THE SIDE OF MY BED

 AND I FALL BACKWARDS

 AND THEY GO ON TO LIFT 

  

 MY FEET ON THE BED

AND SAY SHE LOOKS CROOKED

BUT IT REALLY FEELS LIKE

I HAVE A BROKEN BACK

THEY SAY SHE NEEDS PULLED UP.

 THERE SHE IS STRAIGHTEN OUT

 GOD I AM PLEADING WITH YOU TO HELP ME

 HELP THEM.

 GOD  I KNOW WHAT I CAN DO,

 BUT GOD WILL YOU INTERVENE IN THEIR

     

 IN THEIR HEART.

 OPEN THEIR EYES

 GIVE THEM WHAT

THEY NEED TO BE ALERT

TO ANY PATIENTS NEEDS.

THANK YOU LORD

LORD I GUESS I'M STILL ANGRY

LORD I FEEL THE DIFFERENCE

I AM HERE WITH YOU

 WHEN I WASN'T WORKING YOU

 AND PEOPLE SAID

WAIT ON THE LORD AND HE WILL PROVIDE

  EVEN GREATER THAN

YOU EVER NEED IN ABUNDANCE

BE FAITHFUL AND

 HE WILL BE HERE

 WELL LORD I WAITED YEARS FOR YOU
 
 YEARS, YEARS, YEARS


 AND EVERYDAY I AM THANKFUL




 I WAS NEVER EVER DISAPPOINTED




I AND YOU SHOWED UP EVERYDAY


BECAUSE I DID NOT HAVE MUCH I HAD TO DEPEND


YOU LORD


  YOU BROUGHT MY SON FROM TH DEPTHS OF HELL


MY TWO GRAND DAUGHTERS


RICH, STACY AND GREG


 CAREERS THAT WILL GO FORWARD


 WHEN MY FRIENDS MEET SOMEONE SPECIAL


 I STEP BACK AND PROBABLY


AM A MARTYR


 I SUFFER BUT YOU ARE THERE AND GIVE ME


 A NEW IDEA POPS IN MY HEAD AND I


 START CHANGING MY COMFORTABLE LEVEL


 TO A NEW AND DIFFERENT


PROJECT LIKE "NEIGHBORHOOD FRIENDS CARE"


 I WAS DESTINED TO DO THAT AFTER I LOST  SCHOOL.




AND WAS IN SUPPORT GROUPS OF MANY ILLNESSES


AROSE THAT IDEA.


 GENE SAID, '" I 'WAS LIKE A INCUBATOR 


  I KEPT IT ALIVE FOR FIVE YEARS


THIS IS WHERE YOU AND I SLIPPED UP.


I   ALWAYS TOLD PEOPLE

BE AWARE OF A CRISIS

 A MIRACLE  IS ABOUT TO

HAPPEN

AND MANY YEARS I


  SAW WHAT GOD GAVE

HE WILL GIVE 

MORE THAN YOU EVER WOULD KNOW

I DID NOT WANT MUCH

BUT TO LIVE NEAR MY GRAND-DAUGHTERS

    

 SO I COULD HELP WHEN THEY NEEDED ME




HE ALLOWED ME KNEW STEPS 


 I WAITED


MY HOUSE PAINTED ON THE INSIDE


JC WILLIAMS WAS SENT


 AND HOUSE WAS PAINTED

 I WAITED YEARS FOE THE LORD


AND HE CAME


LORD YOU KNOW EVERY TIME I WAS HURT IN ACCIDENTS

  AND WAITED TO GET WELL,
  IT TOOK OVER A YEAR FOR OVER MANY YEARS


 AND WAITED GRACIOUSLY


FOR YOU LORD


 I KNEW YOU CAME AND ALWAYS

 GAVE DEEP THANKFULNESS
  
 ESPECIALLY FOR MY NEW CAR

 TO GET TO THE POINT

 WHERE ARE YOU LORD


 I AM RISING TO THE TOP


 OF DISEASE


 I CAN'T EAT, MY LUNGS ARE VERY BAD,






MY HANDS AND LEGS DON'T MOVE


THIS IS MY WORST


 I DON'T KNOW WHAT I AM WAITING ON A TRAKE


 I APPRECIATE  ALL THE EQUIUPMENT


 THAT MAKES THIS DISEASE EASIER


GOD I AM HAVE A TERRIBLE  


 IDEA I CAN'T
            
GIVE UP MY FAMILY


I'VE BEEN REALLY AWFUL GRANDPARENT


 I CAN'T STAY WITH THEM


 OR PICK THEM UP


ARE THE GATES OF HEAVEN


 IS WHAT  I AM WAITING ON?


BUT I AM NOT


I WANT TO AND GIVE THE WORLD THE WORLD HUG


I MEAN I WOULD  LIKE  TO  SAY
THANKS


THAT HAS TOUCHED MY LIFE


AND MY LIFE BE RICHER 


























  

MY DEAREST LORD I REALIZE YOU ARE WITH ME

DEAR LORD I THOUGHT YOU WERE HIDING

 BUT AS I GET WORSE EVERY DAY

 AND FRIENDS AREN'T CONTACTING ME

  

 OR STOPPING BY

 WHICH LEFT ME VERY LONELY

 AND WONDER

HOW ANY ONE

 COULD IMMEDIATELY STOP LIVING

AND 

LOOKING TO THE FUTURE

IT SEEMS IMPOSSIBLE IF SOMEONE ISN'T

GOING

 THROUGH A SEVERE CRISIS

 LIKE A NATURAL DISASTER

 OR

 IF ONE  CAN'T

  

 CAN'T GET OUT.

THEN THAT IS W

 I HAVE TO SPEAK MY TRUTH

 WHILE I WAS IN MY HOME 

 I COULDN'T IMAGINE NOT LIVING THERE

 I HAD A FEED TUBE  SURGERY

WHICH WAS HARD ON ME

  AND WHEN RELEASED

 MY CHILDREN SAID 

YOU NEED 24 HOURS CARE

 AND FOUND A NICE REHAB PLACE

 WHICH HAS TURNED OUT TO BE WHERE I LIVE

I CAN'T EVEN CLIMB MY

 STEPS

 INTO MY HOME.

 THE LAST THREE YEARS

 MY APARTMENT

I FINALLY GOT IT TO WHERE I LIKED IT;

HOW I WANTED TO PAINT IT
 
AND GET WHITE COVERS FOR LIVING ROOM SUMMER FURNITURE

OUT DOOR FURNITURE

 INSIDE I HAVE LABELS 

TO NAME COMPUTER WIRES AND OTHER THINGS

  .
 I GOT THE BEST BATHING SUIT I HAD EVER HAD.

WELL ENOUGH ABOUT MY HOME


WHEN I HEAR SOMEONE

  TALK  ABOUT GOING TO THE MARKET ,

   BUYING FLOWERS,

  THURSDAY FARMERS  MARKET


SHOPPING FOR CLOTHES


 PIERCED EARRINGS


 EATING ANYTHING


 DEAR GOD


 I AM HANDLING IT AND LETTING GO


 THE ONLY WAY I COULD DO THAT


IS YOUR DIVINE HELP


THAT ALLOWED


 NOT TO SUFFER THOSE LOSSES.


WAS NOT ME JUST ASK CAROL ADAMS

THE WAY  I CARRIED ON WITH HER

ABOUT NOT WANTING TO LEAVE  MY PLACE

PROBABLY SCARED THE WHOLE CHURCH

IF SHE STAYS IN HER APARTMENT

 WE CAN'T HELP WITH THAT DREADED DISEASE.

SO I AM NEARLY TOTALLY ISOLATED

AND ME AS A MEMBER OF MY SUNDAY SCHOOL CLASS

 COULD EVER FATHOM SUCH A LOSS.


 LET ALONE THE LOSS OF BODY FUNCTIONING

WELL LORD

I HAVE CHALLENGED YOU INSIDE AND OUT

 AND FINALLY

 I COULD NOT TAKE THIS GRAVE LIFE


WITHOUT LAUGHTER AND JOKES


IF IT WERE NOT

FOR YOUR BELIEF IN ME

AND MY BELIEF IN YOU

THIS IS A GOD-CENTERED WORK

I HAVE BEEN SLIDING DOWN

INTO THE DEPTH'S OF DARKNESS AND LORD

YOU HAVE KEPT ME A FLOAT

PRAISE THE ;

LORD BECAUSE HE HAS DONE

A GREAT FEAT IN ME!




















































 

•  I

ALONG DAYS NIGHT, LORD I AM FAILING

LORD

I DON'T KNOW WHETHER PEOPLE  

UNDERSTAND 

HOW FAST THIS DISEASE TRAVELS.

ANYTHING YOUR FAVORITE FOOD WAS

 TO CARE LESS FOR ANY FOOD

I WOULD NOT 

LIKE

TO EVEN BE SERVED

MADE BY 

SOMEONE ELSE

IS NOT PLEASING MEET

 LORD WHAT AM I TO LEARN

FROM ALL THESE

LOSES

 YOU DON'T EXPECT

  

 LORD 

 MY INDEPENDENCE

 HAS BEEN SHOT DOWN

SOMEONE HAS TO BATH ME

 I CAN'T EVEN WASH MY OWN HAIR 

 I HAVE TO HAVE TWO PEOPLE

     

 TO GO ANYWHERE

  

EVEN THE BATHROOM.

  I HAVE A LOT

I CAN DO 

 MANY THINGS THAT HAVEN'T

 GONE  

 COMMUNICATION

  

 FAMILY, FRIENDS, PASTORS.AND GROUPS

 IT IS BLESSING  

I HAVE  MY EYES

 MY HANDS ARE ONLY SLIGHTLY

 USEFUL.

 THIS IS MY WORSE SEASON

  

 IF SOMEONE HAD TOLD I WOULD LOSE

ALL EIGHT MONTHS SINCE I STARTED TO LOSE

 IN ALL WAYS.

 USUALLY PEOPLE HAVE

 SOMETHING THEY CAN WORK

OUT THROUGH

 HEALTHY LIVING.

 NOW THERE IS NOTHING TO DO 

 BUT MANAGEMENT

 OF HOW YOU LIVE

  

 WITH ALS 

IT IS A FIGHT 

   

 TO DO ANYTHING.

 LORD THANK YOU GUIDING ME
TO ACCEPTANCE

OF MY LIFE

   I FEEL I AM BRAVE

 AND COURAGEOUS

 LORD I WISH
 
 I DID NOT WANT BE BRAVE

 OR COURAGEOUS,

 THOSE ATTRIBUTESI
 
 AT THE COST OF SOPHIE AND ANNIE

 RICH AND STACY

GREG

 BRENT
  
 BARBARA AND FAMILY

 JOHNNY AND BELKIS

 A NEW FOUND PEACE

WITH DICK

 CONNIE AND HER FAMILY

 EDIE AND HER FAMILY
 
GENE AND HIS FAMILY

AND MAYBE IT NOT WHAT I PLANNED
   

 THAT IS THE MOST PROBLEMITIC

IT'S ALL THE DREAMS AND LOVE OF PEOPLE

 "NEIGHBORHOOD FRIENDS CARE"

STYLE AND CREATION
 
 CHURCH, BIBLE DISCUSSION
  
 LORD THESE ARE NOT WHAT I AM BRAVE ABOUT

ALL THESE  I AM  STRUGGLING WITH AND DON'T TO WANT LEAVE
 
 AM I SELFISH OR  

 YOU WILL WORK IT OUT


I FEEL CONFIDENT IN YOU LORD

THAT  YOU WILL FIGURE OUT WHAT 
 I AM TO DO.





 

GOD DID I TAKE A BREAK FROM YOU OR DID YOU TAKE A BREAK

DEAR LORD I HAVE BEEN SO TIRED

I AM TRULY BLESSED 

 FOR ALL THE HELP AND FRIENDS

I HAVE RECEIVED

 I KNOW THAT IT IS YOU LORD

THAT MAKE ALL THIS OVER WHELMING

 LOVE THAT HAS BEEN SHOWN ME

BUT LORD FOR ALL THE OTHER ALS PATIENTS

 I WRITE THIS BLOG TO SHOW 

 WHAT IT IS REALLY LIKE

TO HAVE ALS

 YOU DON'T KNOW ABOUT ONE SECOND OF YOUR LIFE

 THINGS DON'T WARN YOU JUST LOOSE

STRENGTH 

IN ONE PLACE OR THE OTHER

 AND ONE CAN'T FACE IT

 LIKE I KNOW MYSELF

 I SPILL WATER PITCHER

 AND GLASS MANY TIMES A DAY OR NIGHT

 IN BED ALL OVER ME.

 I STILL DON'T WANT TO GIVE UP MY INDEPENDENCE  


 I REACH FOR MY CUP A SPILL IT ALL OVER ME IN BED

AND. I DON'T ASK THEM TO CHANGE THE BED

 I JUST ASK FOR A TOWEL AND PAT IT UP

 AS POSSIBLE.
    

 INDEPENDENCE


IS THE ONE THREAT THAT SCARES

 ME TO DEATH


     OTHER PEOPLE I SEE ARE COMPLETELY DEPENDENT
                GOOD
  I BELIEVE  THEY TAKE  CARE OF PEOPLE HERE

 BUT THEY ARE 90 YEARS OLD

 I AM YOUNG AND IN NO WAY

 WANT TO BE THAT WAY.

 I DON'T KNOW HOW MUCH FIGHT

I HAVE IN ME.

 I HAVE ALREADY GIVEN IN TO SHOWERS BY MY SELF

 OR GOING TO THE BATHROOM

 BY MYSELF


 I CAN'T  BELIEVE I AM THIS FAR GONE

BUT  I  SUBMIT TO IT.

 WHY LORD WHY DO I TAKE THE DIFFICULT

 ROAD

YOU ARE VERY SENSITIVE

 ABOUT EVERYTHING

THIS IS MY CHALLENGE BUT

 LORD I WANT TO FEEL YOU THERE.

 WE DROVE BY PLACES TODAY

 THAT MY FRIEND CONNIE

AND  WE VISITED IT MANY PLACES LIKE DENNY'S

WHEN I SAW IT REMEMBER

 HOW WE LIVED

AND TALKED AN ABUNDANCE OF LIFE

SUPPORTING AND EMPOWERING EACH OTHER

 PEOPLE ARE AFRAID

TO TAKE ME OUT BECAUSE THEY ARE AFRAID THEY CAN'T DO IT.

 OR SOMETHING ABOUT

 ME FALLING.

 I HAVE FALLEN MANY TIMES

 AND STILL KEEP TICKING.

 NOT THAT I WANT TO FALL BUT

 I WANT TO EXPERIENCE   
 
MY FAMILY, MY FRIENDS WITHOUT THEY DESERTING ME

I KNOW SOME PEOPLE CAN BE WITH ME

I KNOW SOME PEOPLE CAN'T  BE WITH ME

 I HAVE TO LET EVERYTHING GO

FRIENDS, APARTMENT, AND CAR

  GOD YOU HAVE GIVEN ME THE STRENGTH

  TO DEAL WITH

LETTING GO BUT

MANY THINGS  GO THROUGH MY HEAD

 IN A DAY.

 THE NURSES AND AIDES

 HAVE FUN WITH ME

 AND WE

JOKE AND JOKE AND JOKE

TO MY DEMISE AT TIMES

AND SURELY THEIR DEMISE










 






  






  

I AM IN AWE OF YOUR GIFTS D GOD THANK FROM THE BOTTOM OF MY HEART

MY DEAREST LORD

THIS DISEASE IS A REAL CHALLENGE

I FELL AGAIN TODAY

AND I BELIEVE YOU 

  

CARRIED ME AND LAID ME DOWN

SOFTLY

I DID NOT GET A SCRATCH,

AND THANK YOU LORD

FOR THE NURSES WHO COULD GET ME UP

I HAVE FALLEN SEVERAL  TIMES

AND COULD NEVER GET UP

 THANK GOD I LOST WEIGHT

THE WORLD MOVES SO FAST

 ONCE I LOSE CONTROL YOU MY AS WELL

GO WITH THE FLOW..

 PEOPLE THINK WHEN

I LOSE CONTROL OF A LEG

OR  MY FOOT GIVES OUT

YOU CAN'T KEEP MY FOOT OR LEG

UNSTABLE

YOU MUST BACK OFF AND START OVER

AND YOU MAY NEED EXTRA HELP

YOU HELP ME BE HERE

NURSES TEAM UP KNOW MATTER WHAT

LAST WEEK I WAS HURT  BADLY

TT

 YOU ARE WITH ME SEEING I WON'T

I WILL ASK FOR HELP ANY TIME

 AND WON'T GO ALONE.

 DEAR LORD DO YOU THINK I AM TIRED

 OR HAVE I LOST MY STABILITY

AND WILL SOON NO LONGER 

   

 BE ABLE TO WALK

IT IS NOT FOR ME 

 IT'S FOR GRAND-DAUGHTER

  

MY CHILDREN AND FRIENDS.

 THEY WILL BE REALLY

AFRAID TO  TAKE 

AND TAKE ME ANYWHERE.

I AM STILL LIVING

 I'VE LOST SO MUCH ABILITY

 MY HANDS ARE REALLY GOING

 FAST

 

 

.

GOD SENDS FRIENDS IN A NICK AT A TIME

I AM GOD'S SERVANT

AND 

 HE SENDS PEOPLE JUST IN S NICK OF TIME

TO KEEP ME HANGING ON.

 MOST OF THE TIME I AM FACED

WITH DAILY LOSES

 SOME THINGS ARE HUMOROUS

ZIP LOC BAGS

AND LITTLE CONDIMENT BAGS

  LIKE KETSUP

NOT OPENING ANYTHING

LIKE BOTTLES, CANS, SHAMPOO

  

 YOU GUESSED

 I DROPPED THREE GLASSES OF WATER TODAY

MY HANDS ARE A LOT WEAKER

 IT IMPOSSIBLE TO DRESS AN UNDRESS

THAT'S THE REASON  I AM LESS

LIKELY TO GET HOME A MONTH

I AM TROUBLED GOD BUT I DEPEND YOU AND MY KIDS

DICK, MULTITUDE OF HELPERS.

AND FRIENDS AND SISTER

 THE ONLY THING ABOUT LOSS

ALS AFFECTS EVERYONE.

 IF  I GET TO GO PLACES

 PEOPLE HAVE TO DEAL

 WITH LEGS

ARMS

MOUTH, SWALLOWING AND CHOKING

ALS  IS A REALLY BAD DISEASE.

 I LOOK AT PEOPLE ARE BED RIDDEN

 HOIST UP BY SOMETHING THAT LOOKS LIKE LIFT 

 GOD , I DON'T FEEL I HAVE A CHANCE

GIVE IN TO THIS DISEASE

 IT WAS DIFFICULT TO THINK LIKE THAT

UNTIL IT HAPPENS TO YOU AND
I 

 AM IN THE TROUGHS
 
 OF THIS ALS

 GOD I AM A LITTLE LESS ANGRY

 I KNOW I HAVE TO FACE MY CHALLENGE

 IT REMINDS YOU

THAT YOU CAN'T GET OUT OF IT.

I AM ACCEPTING  THINGS AND JUST LET THE NURSES HELP ME

 TO SHOWER, PUT ME TO BED, GET ME OUT OF BED.
  
 THAT GOD IS HOW I AM LIVING

 MAY I RUN INTO A

 SUPER GADGET LADY LIKE I AM.

IT IS DIFFICULT TO HAVE ONLY SONS AND FORMER HUSBAND

 TO TAKE YOU TO THE BATHROOM
 
 THEY YELL ARE YOU OK

 WHY WOULD YOU DO THAT TO A MUTE..

 GOT TO FIGURE THAT SOON.

 GOD LOVE THEM

 THEY DO THEIR BEST

 MY HEART IS NOT ANGRY AT YOU GOD

 DO YOU BELIEVE I HAVE COME TO LOVE AND I AM WORSE THAN EVER

 I GUESS I  KNOW I DON'T HAVE A CHOICE

 THIS SEEMS LIKE A TURNING POINT

I HOPE YOU AND I CAN HEAL
 
AND
YOU HELP ME HAVE COURAGE
  
 TO FACE MY CHALLENGES

 GOD  I AM ASKING

FOR YOUR HELP TO FACE THIS;

 THIS IS JUST THE BEGINNING

  I FEEL TERRIBLE WITH MY GRAND DAUGHTERS

 SOPHIE AND ANNIE

I WANT TO READ THEM A  ONE PAGE STORY
  THAT I USED FOR SON'S

 FOR US TO STAY CLOSE TO YOU

 PRECIOUS MOMENTS

BREATHE OF AIR

DEAREST GOD

I AWAKENED TONIGHT

 WITH TOO DRY OF MOUTH

  

 I RIPPED MY MASK OFF AND STARTED TO PANIC

i REACHED FOR THE WATER AND COULD NOT PULL MYSELF UP

  

 I NEEDED A DRINK AND HALF TO SIPS

   

 OR I WILL CHOKE

 MY DIAPHRAGM DOES NOT WORK 

AND

IT DOES NOT SEND OFF CARBON DIOXIDE

 SO I NEED THIS BI-PAP MACHINE 

WORKS TO PUMP OUT THE CARBON DIOXIDE.

 NOW IF YOU ARE TAKING A DRINK AND CAN'T SWALLOW

 MORE THAN ANYTHING I WILL PROBABLY CHOKE. 

 INSTEAD I TOOK A SIP AND DROPPED THE WATER

ALL OVER THE FLOOR.

 AS THE SYSTEM SEEMS TO SETTLE DOWN 

 I STARE INTO THE DARK.

 I FEEL JUST LIKE JANE. 

THIS STUFF IS REMOVED FROM ME AS

 AS I DO WHAT   I CAN TO SETTLE DOWN. 

 LAST TIME WAS TONGUE AND TEETH

 ADD LUNGS AND CHOKING 

 AND 

 NOT BE ABLE TO TALK

THAT TAKE OF EVERYTHING

 EXCEPT MY BRAIN

 TECHNICALLY 

  

I HAVE TREMENDOUS KNOWLEDGE OF WHAT IS HAPPENING

  AND ALWAYS WILL HAVE A BRAIN TO SAY WHAT I WANT

 AND KNOW WHAT IS GOING ON. 

THIS IS YOUR GIFT TO ME LORD.

AND I VERY KNOW EVERYTHING COULD STOP IN A MINUTE

 I WANT MY FAMILY AND FRIENDS TO KNOW

 I HAVE HAD A WONDERFUL LIFE

 AND I HOPE YOU FOLLOW YOU DREAMS

 EVEN IF YOU LOSE LIKE I DID MANY TIMES.

 THIS IS MY TAPESTRY

 WITH GOLD AND  SILVER

 PURPLE AND BLACK.

 GOD PLEASE MAKE SENSE OF THIS AND HELP ME GO ON

 AND WANT TO LIVE AND BE WITH MY FAMILY


 THIS IS BEYOND THE NURSES

 THEY HAVE NEVER SEEN AN

 ALS PATIENT.

 NOT MANY HAVE IN THIS AREA

 BE STILL AND KNOW THAT  I AM GOD

 MY FAVORITE SAYING AND THIS IS THE FIRST TIME

  I HAVE BEEN ABLE TO SAY IT.

 IT IS A SIGN I AM GROWING

 NOT ACCEPTING IT,
BUT  THIS SAYING

 BUT IT IS IN MY HEART DEEP.

 GOD YOU WILL GET ME THROUGH WITH GRACE!!!

THANK YOU LORD FOR TEETH AND TONGUE AND MOUTH AND FACE

LORD,

I WISH PEOPLE WOULD REALIZE 

WHAT THEY HAVE

BEFORE THEY LOSE IT.

LORD I HAVE LOST SO MUCH FROM THIS DISEASE 

AND  

I AM SCARED

WHY LORD

 WHY IS MY TEETH

  NOT ABLE TO CHEW

  

 WHY IS TONGUE TOTALLY 

 UNCOOPERATIVE

 BREATHING HURTS

 THAT IS ABOUT THE WORSE

 AND  I GOT IT ALL

 NO VOICE

 NO SWALLOW

    

 NO CHEWING

 YOU CAN'T GET ME  BIG STEAK

 OR

 ICE CREAM 

  

 OR SIMPLY WATER.

 I AM TRYING TO RISE ABOVE IT

 BUT I CRY INSIDE WHEN,
I SEND A MEAL 

 UNTOUCHED BACK TO THE KITCHEN

 I KNOW I AM LOSING MUSCLE

WHY DID I HAVE TO GET BAD IN ALL PARTS

 YOU DID NOT GIVE ME TIME TO ADJUST

 AND COMPLAIN ABOUT 

 MY ARMS OR LEGS

YOU SHUT ME UP FIRST

 SO  I COULD NOT TALK

 WHEN I THOUGHT I WAS LIKE MY MOTHER

BUT SHE COULD EAT

 LIKE MY FATHER 

 BUT HE COULD USE OXYGEN

LORD I CAN'T EAT OR DRINK

LORD OXYGEN COULD KILL ME

 THERE IS EVEN A NAME FOR IT

 WHAT DID I SAY LORD

 CAN YOU HEAR ME 

 PLEASE LORD HELP THE DOCTORS

 FIND SOMETHING

 THAT WILL HELP 

 MAYBE

 YOU PERFORM A MIRACLE
TO OTHERS

I DON'T KNOW WHY I AM NOT BITTER

BUT I NEED TO COUNT ON YOU TO ORCHESTRATE

 MY FAMILY AND FRIENDS

 TO HELP ME LIVE.

 LORD THIS IS REALLY GETTING OLD

 RELEASE ME FROM THIS AWFUL DISEASE

 AND GIVE ME BACK MY LIFE

 I PROMISE I WILL GIVE EVERYTHING I HAVE

 TO HELP OTHER PEOPLE.

 WHY THE PERSON WHO LOVED PEOPLE 

  

 GETS SHUT UP 

SHUT DOWN

AND I NEED HELP TO GET IN AND OUT OF BED

 HAVEN'T I SURRENDERED

 WHAT MORE DO YOU WANT

 JOB HAD SOME GOOD THINGS

 I FEEL LIKE I AM SLIDING DOWN A STEEP SLOPE

 AND ALTHOUGH YOU WILL BE THERE TO CATCH ME

 I WANT THE JOURNEY 

 MY WAY

 WHAT IS WRONG 

   

 WITH ME WANTED IT MY WAY

 DON'T I DESERVE SOMETHING 

 MAYBE FREE DRINKS OF WATER

  MAYBE A CHEERIO 

  MY TONGUE CAN CATCH

OH GOD YOU KNOW WHAT WILL GIVE ME PEACE BETTER THAN I DO 

  

 I AM JUST GRASPING AT STRAWS

   

NOBODY KNOWS THE TROUBLE I SEE GLORY ALLELUIA

MY DEAREST LORD

 I SEE TROUBLE COMING THE LONGER 

   

 I STAY HERE.

 IT IS DIFFICULT TO THINK

  

 WHEN YOU ARE IN AN ENCLOSED AREA.

  I AM COMPLETING

MY OT/PT ON MARCH 28, 2011

I AM GETTING WORSE AND NOT IMPROVING 

  

 SO I DON'T WORK ON THE PROBLEM.

  

 THE REASON I HAVE COOPERATED HERE

IS BECAUSE I HAD PLACES TO BE

AND 

THINGS TO WORK ON

TO HELP MY SELF

WHEN I AM NOT MOTIVATED,
I TEND TO WITHER

YOU CAN ASK PEOPLE TO BE INTERESTED IN YOU REALLY.

BUT THEY ALL HAVE THEIR OWN LIVES.

 I AM NOT EATING WELL

 AND NEED TO FIGURE THIS OUT MYSELF.

THEY SAID GET YOUR  HAIR CUT WITH BANGS

 WE ARE AFRAID YOU WILL FALL.

I AM TOLD THINGS THAT WILL MAKE MY LIFE EASIER 

 THAN IT IS NOW

  

 BUT NOTHING CHANGES THIS ILLNESS

IT IS GETTING WORSE WALKING

  

 AND I PRIMARILY

USE A WALKER TO GET AROUND.

 I KNOW,
  I NEED THAT IN MY HOME.

IF I SELL MY HOUSE AND SPEND THE MONEY

 ON MY BILLS.

 THEN I WOULDN'T HAVE TO WORRY ABOUT BILLS.  

 I DO KNOW I WILL BE ABLE TO LEAVE

 FOR A COUPLE DAYS

THAT SOUNDS FAIR 

 BUT CAN I GO HOME

 I AM LOSING WEIGHT AND HATE EATING.

 I DON'T KNOW WHETHER IT IS HERE

 OR  

 I WILL DEPEND ON THE FEED TUBE ALONE

 THAT SCARES ME.

 MORE DEPENDENCE.  

 LORD,
I WAS INDEPENDENT
AND 

  

 GOT TO BED BY MYSELF OR GET UP BY MYSELF

  I HAVE TO HAVE HELP TO DRESS MY LOWER HALF.

SOCKS AND SHOES ARE HELL.

THIS HAS BEEN IN THE LAST TWO WEEKS

 I PARTICIPATE  IN 

 

"PATIENTS LIKE ME"

 AND 

"CHAT WITH ALS PATIENTS AROUND THE WORLD"

 I RECOGNIZE COMPARED TO OTHERS 

   

 I HAVE A VERY BAD 

 CASE OF ALS

 MY SWALLOWING AND BREATHING

ARE THE MOST LIFE THREATENING

BUT FALLING AND ANY SURGERY 

 COULD DO ME IN. 

 SOMETIMES I AM IN A RUSH TO DO EVERYTHING 

 AND  

 SOMETIMES I DON'T CARE

SEE THE TROUBLE I SEE

 GLORY ALLELUIA

 GOD YOUR ARE ON MY SIDE

 I KNOW YOUR THERE 

BUT WHY DO I FEEL YOUR ABSENCE

 IS IT THAT I CAN'T LIVE WITH  FAMILY

IS IT A MOVE TO BRING ME HOME TO YOU. 

 I KNOW YOU LOVE ME,

BUT I CAN'T FIX THIS TROUBLE I SEE.

LORD I NEED YOUR PEACE TO ENVELOP ME.

  PLEASE I FEEL I AM FIGHTING EVERYWHERE

 I KNOW YOU ARE THERE

  

 PUT A HEDGE OF PROTECTION AROUND ME 

SO THAT THIS DISEASE DOESN'T EAT ME ALIVE.

WHAT WE CAN DO IN A DAY IF WE HAVE OUR HEALTH

MY DEAREST LORD

I FEEL LIKE THIS A HUNDRED TIMES A DAY

 IT DRIVES ME CRZY

   

 BUT SHAME ON ME

YOU HAVE PROVIDED ME WITH 64 YEARS OF WHAT I WANT TO DO.

  JUST A LITTLE WHILE AGO ,

I COULD HAVE DRIVEN TO THE POTOMAC BEAD COMPANY  

AND ENTERED A CONTEST

AND MADE A PIECE OF JEWLERY

WHAT DOES THIS TELL ME

 THAT  I HAVE BEEN GIVEN JUST ENOUGH 

AND

MY NEW JOURNEY WILL BE ENOUGH

IT DOES NOT MATTER THAT I HAD NOT GIVEN ENOUGH

 MY HEART WANTED TO LEAP WITH MY GRAND DAUGHTERS

SOPHIE AND ANNIE

 I WANT TO BE THERE FOR THEIR SUCCESS AND FAILURES

I WANT TO GO ON VACTION 

WITH ALL MY SONS

AND STACY AND SOPHIE AND ANNIE,

PLEASE LET ME LORD

  I THANK YOU FOR A PLACE TO LIVE

AND A NEW CAR

  

 EVEN IF ONLY FOR A GLIMPSE OF TIME

 I HAD SO MANY SET BACKS

 SCHOOL, MARRIAGE, SMALL JOBS

BUT I HAD THE BEST GIFT IF ALL, 

I GOT TO STAY HOME WITH MY SONS, 

FOR THEIR YOUNG LIVES

I WILL NEVER FORGET TAKING THEM TO 

OR THREE DIFFERENT  GAMES OR PRACTICES

 AND WATCH EVERYONE.,

PRACTICE OR GAMES 

IT WAS MY SON'S UP THERE GIVING THEIR ALL

AND GOOD OLE MOM WAS THERE.

I GOT MORE GRASS STAIN OUT OF UNIFORMS

I GOT TO WATCH MY SON'S

SIT UP, 

TAKE THEIR FIRST STEP 

AND 

SAY THERE FIRST WORD

WHAT A GIFT LORD

I THANK YOU LORD 

FOR A LIFE FILLED WITH LOVE

 NO MATTER WHERE YOU LED ME  I SAW LOVE

 IT WAS MY INTENTIONAL LOVE

BECAUSE A LOT DID NOT DESERVER

 MY LOVE AND CARE

  

 EVEN THOSE WHO STOLE FROM ME 

 I DID NOT PUNISH AND FORGAVE 

I DON'T EVEN KNOW HOW HOW

  I GUESS YOU SAID TURN THE OTHER CHEEK

 THANK YOU LORD FOR RELIEVING ME OF ALL THE HATE IN MY LIFE

AND GIVEN ME

LOVE

THIS IS A TERRIBLE DISEASE

   

HELP ME TO HANDLE IT WITH GRACE

 WHICH ISN'T INDICATIVE OF TONIGHT

 THIS HAS BEEN A REAL TEAR JERKER FOR ME. 

 TO GOD'S LOVE

  

 

LORD I AM AT IT AGAIN BAWLING REACH ME PLEASE

DEAREST AND LOVING LORD

PLEASE PUT YOUR ARMS AROUND ME.

  THIS IS SO DIFFICULT

TELLING SOMEONE NEW

 I TRY TO BE BRAVE

 AND ONE MINUTE AT TIME

 I TRY MY BEST

  TO COOPERATE AND NOT CAUSE TROUBLE 

 BUT IT NOT FAIR 

THE THEY ARE TREATING ME ABOUT MY WHEEL CHAIR

IT HURTS ME MORE THAN I WOULD EVER HURT SOMEONE..

I HAVE A MIND TO FOLLOW DIRECTIONS

 I DON'T NEED TO BE PUNISHED

OR HURT ANYMORE

  

 SOON I WILL HAVE TO HAVE SOMEONE ELSE DRIVE ME

 I AM LOSING STRENGTH IN MY HANDS

 AND IT IS ONLY A MATTER OF TIME BEFORE I LOSE

 ALL STRENGTH  AND CAN'T STEER THE WHEEL CHAIR.

 WHY DON;T I JUST GIVE IT BACK.

 THE WHEEL CHAIR THAT IS.

 DEAR LORD WHERE IS THE SERENE PEACE

THAT I BELIEVE A TRUE BELIEVER WOULD HAVE 

 AM I FAKE CHRISTIAN?

 WHY CAN'T  I REACH YOU

PLEASE LORD HOLD ONTO ME 

 THRASHING AND BAWLING

 OUT OF CONTROL

YOU DID NOT PROMISE ME A ROSE GARDEN

 

BUT THAT YOU WOULD WALK BESIDE OF ME

HEY, HEY LORD I BELIEVE YOU NEED TO CARRY ME

FOR A LONG WAY

  THIS ROAD IS REALLY RUGGED.

AND MY FEET ARE VERY GENTLE

PLEASE LORD BE WITH MY CHILDREN

AS IT IS HARD ON THEM

TO SEE SUCH ANGUISH

 LORD I AM BECOMING CLEARER  

I KNOW YOU HAVE THE PIECES 

TO KEEP ME WHOLE WHEN I AM  

SPIRALING OUT OF CONTROL

I AM BEGINNING TO FEEL YOUR PRESENCE

I KNOW YOU HAVE A HOLD OF ME

HOLD ME TIGHT I BREAK LOOSE

 THIS IS A TRUE MERRY-GO-AROUND

 I CAN GO TO BED AND HAVE PEACE

AS I KNOW YOU ARE UP WITH ME

  DOWN WITH ME

THIS WRITING IS FOR ME TO FEEL YOUR PRESENCE!

YOU WILL HELP ME SEE 

THE LITTLE DAY IN THE MIDDLE OF THE NIGHT

AND I WILL BE BLESSED

 

LORD I TRY TO BE PRESENT

LORD TEACH ME TO HANG ON

I AM STRUGGLING WITH EVERYTHING

 MY HEALTH WHICH IS DIFFICULT IS GETTING WORSE EVERYDAY

BUT i STILL HAVE MY WISHES AND DREAMS

I LIKED TO GO TO HOME SHOWS AND CRAFTS SHOWS

 THAT WAS NOT SOMETHING BIG.

 THE TIME I WENT I GOT A MOTEL ROOM TO GO. 

 I HATED TO CALL BARBARA, RICH OR  GREG,

  CAN I COME DOWN THIS WEEK AND DO?

 NOW I WOULD GIVE ANYTHING TO ASK CAN  I COME DOWN

I AM SURE IT WOULD NOT BE A BAD WEEK-END

 I WANTED STACY AND THE GIRLS TO COME UP

AND STAY WITH NANA

SO THEY WOULD

  GET TO KNOW NANA'S PLACE

. I WANTED TO GO ON A FAMILY VACATION

 AND EVEN PAID FOR IT

AND 

WE COULD NOT GET IT TOGETHER.

WHAT IS THAT NOTION HE WHO LIVES IN THE WILL OF GOD WILL BE GIVEN MUCH, 

 WELL LORD I DON'T HAVE MUCH TIME

 AND 

 

I GUESS I AM IN FOR A BIG SURPRISE

A PROMISE IS A PROMISE.

 THIS PAPERWORK AND 

 FILING FOR A NURSING HOME HELP

 IS A KILLER.

 I CAN'T  EAT VERY MUCH AND DON'T HAVE STRENGTH

 BUT THANK YOU FOR THE FEED TUBE.

 I GUESS THAT WAS GIVING ME MORE THAN I COULD EVER WANT.

LORD YOU GAVE ME SOPHIE AND ANNIE WHICH I TREASURE 

 AND I ENJOYED MY APARTMENT

AND 

THE NEW COLORS WHICH 

JC HELPED ME DO.

I WAS HOPING MY MARRIED FRIENDS WOULD START ASKING OVER MORE TO PLAY

GAMES SO I COULD EXPRESSED MY SENSE OF HUMOR.

I KNOW IT IS NOT GONE BUT I WANTED TO DO THAT.

AND WAITED PATIENTLY

 BEING A SINGLE WOMEN IS A REAL HAZARD OF LIFE

IT SHOULD NOT BE THAT WAY BUT IT IS.

  

I BELIEVE YOU KEPT ME BACK FROM SEEKING A PARTNER.

 SOME HOW I KNEW WHEN I DID SOMETHING THAT WOULD BE THE ONLY TIME

I WOULD DO THAT ESPECIALLY IN CHURCH..

THAT IS THE REASON I TRIED TO DO MY BEST 

AND 

CONSIDERED IT AN HONOR TO

SERVE THE CHURCH

IT WAS PERHAPS ONE OF THE MOST IMPORTANT

 THINGS I DID FOR YOU.

 LORD I LOVE THE CHURCH AND PRAY FOR IT TO DO WELL

 GET INVOLVED IN NFC AND SEE WHAT HAPPENS TO THE CHURCH

 I WANTED THAT TO HELP FOR ALL CHURCHES

 I KNEW WE HAD TO GET OUT OF OUR COMFORT  ZONE.

 LORD THE CHURCHES IN THE AREA ARE

 SUFFERING, AND I KNOW NFC WILL HELP.

 WHY DID  I HAVE TO GIVE UP MY PASSION

I KNOW YOU HAVE IT IN THE VERY BEST HANDS

 AND IT WILL WORK FOR THE GLORY OF ALL GOD'S PEOPLE

 AND THE PEOPLE SAID AMEN

HOW LORD HOW DO YOU BURY INTERESTS

LORD THIS IS THE 20TH CENTURY

COMPUTERS HAVE OPENED UP MANY NEW AVENUES.

 I SIGNED UP FOR MANY HEALTH NEWSLETTERS

 BUT NOT ONE PERTAINS TO ALS

   

 

MAKE-UP ULTA AND SEPHORA

HOME SHOWS AND CRAFTS SHOWS

MANY LIGHT HEARTED SHOWS I FOLLOW

THEN THERE ARE POLITICS, FINANCES, ECONOMY

DIET, FOOD STUFF  AND ADVICE TO MAKE YOUR LIFE BETTER

APARTMENT INFO LAND LORD ADVICE

BEAUTIFUL ART AND DECORATING

CHURCH , BIBLE , LOVE AND PASSION

   

 I MADW FOLDERS FOR ALL RHWSW INTERESTS AND MANY MOREIF I WIPE IT ALL OUT 

LIKE DESIGNER CLOTHES

IF I WIPE THAT ALL WHAT IS LEFT OF ME. 

I CAN'T LOOK AT THEM AND DELETE THEM.

THERE IS SO LITTLE WRITTEN ABOUT ALS

THESE THINGS I AM INTERESTED IN I WANT TO SHARE BEFORE I LEAVE

 IT'S THE BEST OF THE BEST

BUT NOBODY CARES AND i DON'T EITHEER

 I AM STRUGGLING TO LIVE 

BUT IT IS DIFFICULT TO DEAL WITH YOUR LOSSES

GOD YOU NEED TO SHOW ME THE SENSE IN THIS

 HELP ME  DO WHAT I HAVE TO DO

 

LORD THERE IS NO GUARANTEE IN LIFE

LORD THERE IS NO GUARANTEE IN LIFE

I WONDER WHY I HAD A ROUGH DAY

LORD IF I AM GOING TO LOSE A LOT OF MY BODY’S FUNCTION

WHY DO I HAVE TO BE A LITTLE SICK ON MY STOMACH

I AM GIVING YOU A BREAK

A LOT SICK IN MY STOMACH THAT I STOPPED TAKING MY ALS MEDICINE

YOU ALLOWED ME TO ACQUIRE

THIS HORRIBLE DISEASE

AND I HAVE NOT CRIED ABOUT MY LOSSES TO MY BODY

 

AS LONG AS

HAVE MY FAMILY AND FRIENDS

THAT I CAN SEE AND SHARE WITH.

THIS STOMACH STUFF KILLS MY SENSE OF HUMOR

I DON’T THINK I HAVE CRACKED ONE JOKE OR MADE ANYBODY SMILE

PEOPLE ARE KIND TO ME

THEN MY ROOM MATE COMPLAINS

LORD I AM NOT TRYING TO MAKE ANYONE ELSE'S LIFE MISERABLE

WHY DO MY ROOMMATE AND HUSBAND SAY ALL KINDS OF THINGS ABOUT ME.

I CAN’T TALK, I CAN’T WALK WELL, I MAKE NOISES WITH MY BREATHING

BUT OTHERS HAVE OTHER THINGS

 YOU DID NOT PUT ME ON THIS EARTH TO BE A DOORMAT

BUT TO HONOR ALL KINDS OF PEOPLE

WHY DID YOU PULL THIS ONE OUT AT THE END

TO HAVE ME TURN IT AROUND TO A POSITIVE

I HAVE ENJOYED THAT ALL MY LIFE

BUT LORD

THIS TAKES THE CAKE

WHY NOW WHEN I AM LEARNING HOW TO BREATHE ON MACHINES,

AND CHOKE ALL THE TIME

WHY COMPLICATE MY LIFE

IS NOT ALS ENOUGH?

WHY DO I HAVE TO HAVE A VERY DIFFICULT ROOM MATE