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