RE: (unknown)

[Guest guest]

Doris,

It shows you as being on the list and getting the digest... Let me

know if you don't get the digest at the rochester.rr.com addy and I'll

do some tweeking from here...

Casey

[Guest guest]

on 3/6/01 3:38 PM, J McMullen at jemscat@... wrote:

>

>> 1) As a parent (and think back to being a NEW

> parent), what would you like to see in the Manual

> about finding help for:

> -finding/getting help from other parents

>

> Parent to Parent is a wonderful organization that

> provides parents with assistance in areas that only a

> parent of a special needs child can know about. They

> have coordinators who can match up parents with other

> parents with similar struggles. These parents can

> provide assistance with educational battles, insurance

> battles, emotional support, and much more. They have

> a national 800# (which I can look up when I exit my

> mail) as well as regional chapters throughout the

> country.

>

> The CHARGE Syndrome Foundation also provides

> directories of families both locally as well as a

> complete worldwide directory to provide assistance on

> CHARGE-specific topics.

>

>

> Regarding the other services, look through your blue

> pages page for page under " Human Services " paying

> particular attention to the headings " Services for the

> Disabled " . Your local Easter Seals, ARC, and Parent

> to Parent Chapter can also steer you to your providers

> of early intervention resources. Request any

> pamphlets any organizations you speak with have.

> Often they have pamphlets that can steer you towards

> other services such as respite or legal aid.

>

> Network with as many parents as you can. Go to

> advocacy workshops to learn and network. Contact

> Parent to Parent and go to their social functions.

> You'll learn through your contacts the people and

> agencies who are particularly helpful for their

> families and who do not.

>

> Reach out to as many parents and professionals as you

> can. Press the professionals for as much information

> as you can. Social workers are often overworked and

> will often dedicate their limited time to the families

> that they deem " most needy " so you really need to

> effectively communicate exactly what your needs are

> and keep on them for answers.

>

> What things are/were most important/helpful to you?

>

> The things most helpful have been FSS funds which in

> some form are in every state. These funds can defray

> respite costs and assistive technology costs. The FSS

> case manager would have been instrumental in helping

> us obtain emergency respite care when it was a life or

> death situation. Unfortunately none of our social

> workers steered us in this direction until after the

> health crisis was over.

>

> Other helpful things: The MA loophole (nationally

> known as the Beckett Waiver) and the HIPP

> program (the state of PA pays the premiums of MA

> recipients when private healthcare is available

> through the parent's employer at less cost than MA

> (saving us much $$$).

>

> Where did you hear about any of these things?

> I learned about FSS only after we heard about early

> intervention. We only heard about EI through our

> Highmark case manager who happened to be a parent of a

> child with Downs Syndrome. I only heard about HIPP

> after 1 1/2yrs later after qualifying because of a

> mistake in my daughter's MA required a supervisor to

> repair and she steered us to HIPP.

>

>

> 2) Input on what needs to be in the Manual (and any

> useful resources you know of) on Transitions:

> - home to preschool (or early intervention)

> - preschool to school

> - one school to another

> - school to adulthood

>

> www.wrightslaw.com is probably the leading authority

> on special ed rights advocacy. He is a phenomenal

> attorney. Your deafblind agency would probably be a

> better resource than your ARC advocacy office for

> assistance because ARC will ONLY advocate for

> inclusion and our kids are so complicated that they

> often exceed the skills of ARC advocates or our

> child's needs don't fit with their political agendas

> of inclusion.

>

> I would recommend the child have frequent

> consultations with a child psychologist (every 3 mos.

> the first 2 years then every 6 mos. for 2 yrs then

> every year) to ensure that the family is taking

> advantage of every service necessary and available for

> the child's development.

>

> Jeanne

>

> __________________________________________________

>

[Guest guest]

Lynn--

From one grandmother to another, it's very hard to try to not interfere but at the same time try to figure out things so you can be prepared to answer ask correct questions and be prepared to support your children. Please keep on asking questions--

When Josh was first born, he was sucking but refluxing--had to stop bottle feeding and start tube feedings. His tube was in his mouth because of his small nostrils. After 3 weeks, we opted for the Nissen fundoplication--when the MD wraps the top part of the stomach around the distal end of the esphosgus to prevent reflux and aspiration. At the same time, Josh had a g-tube (gastrectomy tube) placed in the side of his stomach to feed him without the risks of reflux. At first it was a long yellow-brown tube that we attached a big syringe to pour his formula down it. After several months, they changed it to a Mic-key button--this is done in the office. It is like the part of the swimrings that you blow air into. You attach this tubing to it, add your syringe and place the formula in it and let the formula drain into the stomach. When you are finished, you unlock the tubing and plug off the Mic-key. Kriste changes it herself when it is required.

Hope this helps. Feel free to ask anything. Josh is now 11 months with his birthday on May 26th. We've been throught alot but are making progress every day. I get to see him once a week and he's always changing. He's got big rolly-polly legs and little fat fingers---we are so PROUD!!

Iris--mother and NaNa to chargers, Kriste, age 28 and her son Josh, 11 1/2 months

Southaven Mississippi

[Guest guest]

Lynn,

I didn't see the photo!

Can you try to email it to me directly (gweir@...), and see if that works?

THanks

Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: (unknown)

Barbara, I hate to answer your question with a question, but I am still learning about all this CHARGE stuff. As you have probably read, we aren't even sure yet if my granddaughter, Jourdan, has CHARGE Association, but she does have many of the anomalies that go along with it. My question is, what are all of these tube feeding devices you all talk about. Right now Jourdan is being fed with a tube down her nose directly to her intestines. In the past weeks, she had a tube down her mouth because first the nose was blocked and then later because of healing from the surgery. During that time the tube was first place directly into the intestines, but worked it's way into the stomach. For a time she was being feed into the stomach without any problems. Does that mean that we will not have problems with reflex? Again, I have so many questions, there seems to be no end. I am a little behind you as Jourdan is only 2 months old and still recovering from her first heart surgery. At this time we are not sure if she will go home before the second heart surgery or not. They are talking about around 6 months of age which would be 4 more months. Right now the problems seem so overwhelming. I can only hope that in a few years we will look back on this time and wonder why we were so upset. I am including a picture with the email, hoping that all on the list will be able to see. One of the ICU nurses took it for us (they are all so great and caring) and it is the best picture that we have yet. Such a beautiful smile, don't you think. I know I haven't supplied you with any information, but hope the best for you and . Thank you for listening. Lynn (grandmother of Jourdan (possible CHARGE)[unable to display image] "5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Elaine,

Istill think Jack and Jillian are related somehow!!! WHAT A CUTIE!!!!

Foley

(unknown)

>

>

>

>

> ______________________________________________

> For a fun and simple way to share photos with

> friends and family, go to www.activeshare.com!

> " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

[Guest guest]

Hello,

Pilar,... Me llamo Alisha, hermana de una "charger" de 9 anos. Para contestar sus preguntas (aunque a mi me parece que su ingles es muy bueno!) No se sabe que son las causas del sindromo Charge. Se sabe que es un gene (o varios) que estan alterados.

mi hermana es sorda, y tiene problemas de balance, nacio con labio leporino y problemas del estomago. No tengo ni idea si existe algun grupo o fundacion en espana. Este sindromo es tan raro.

A veces se asusta demasiado a ver su hijo nacer asi. Pero le digo que no es tan malo como se piensa. Quiero mucho a mi hermana, y es muy bonito tenerla aqui en la casa.

-Alisha

(unknown)

HELLO!!

Hi everyone my name is Pilar Ortega (cousin to Begoña a 5 months charger). I live in Spain, so my English is quite bad and it´s difficult to understand things that are said in www.chargesyndrome.com. I want to know, if it´s known, what causes charge? And if there is any association similar to charge syndrome foundation in Spain, so that I can tell my aunts to go becouse they don´t have internet, they don´t speak any English, and they don´t want to accept that they have had a charger girl. I know Susy´s page, about Sergito but if there are any others I´d like to know them. Thank you very much to every one

PILI

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Thanks !!! Beautiful story

Hugs

Sharon

(unknown)

This is a wonderful story ! 8^)

http://www.angelfire.com/ab4/1944/The_Attack.html

[Guest guest]

sharon--how you doing tonight? what a sad, sad mess. hugs, caro

[Guest guest]

BEAUTIFUL KAREN THANKS. LUV U JO

                              

http://community.webtv.net/jowaca/JOSFAVORITEPICTURES

This is a wonderful story ! 8^)

http://www.angelfire.com/ab4/1944/The_Attack.html

[Guest guest]

KAREN TRUER WORDS HAVE NEVER BEEN SAID. THANKS LUV U JO

                              

http://community.webtv.net/jowaca/JOSFAVORITEPICTURES

http://www.my-tgif.com/rainbows.htm

[Guest guest]

Thanks so much !!!!

Hugs

Sharon

(unknown)

http://www.my-tgif.com/rainbows.htm

[Guest guest]

LAUGH BIRDIE LMAO !!! I MET PPL THIS SMART WHEN I WAS IN THE SERVICE.

LUV JO

                              

http://community.webtv.net/jowaca/JOSFAVORITEPICTURES

JO! WISH I KNEW WHETHER TO LAUGH OR CRY!!! AT THIS STORY!

LOVE, ROBIN

> This was too good to not pass on

>

>

> This is a bricklayer's

> accident report, which was printed in the newsletter of the

Australian

> equivalent of the Workers' Compensation board. This is a true

story. Had

> this guy died, he'd have received a Darwin Award for sure!!!

> Dear Sirs-

> I am writing in response to your request for additional information

in

> Block 3 of the accident report form. I put " poor planning " as the

cause

> of my accident. You asked for a fuller explanation and I trust the

> following details will be sufficient.

> I am a bricklayer by trade. On the day of the accident, I was

working

> alone on the roof of a new six story building. When I completed my

work,

> I found that I had some bricks left over which, when weighed later

were

> found to be slightly in excess of 500 lbs.

> Rather than carry the bricks down by hand, I decided to lower them

in a

> barrel by using a pulley, which was attached to the side of the

building

> on the sixth floor. Securing the rope at ground level, I went up to

the

> roof, swung the barrel out and loaded the bricks into it. Then I

went

> down and untied the rope, holding it tightly to ensure a slow

descent of

> the bricks.

> You will note in Block 11 of the accident report form that I weigh

135

> lbs. Due to my surprise at being jerked off the ground so suddenly,

I

> lost my presence of mind and forgot to let go of the rope. Needless

to

> say, I proceeded! at a rapid rate up the side of the building. In

the

> vicinity of the third floor, I met the barrel which was now

proceeding

> downward at an equal, impressive speed. This explained the

fractured

> skull, minor abrasions and the broken collar bone, as listed in

section

> 3

> of the accident report form. Slowed only slightly, I continued my

rapid

> ascent, not stopping until the fingers of my right hand were two

> knuckles

> deep into the pulley.

> Fortunately by this time I had regained my presence of mind and was

able

> to hold tightly to the rope, in spite of beginning to experience

pain.

> At

> approximately the same time, however, the barrel of bricks hit the

> ground

> and the bottom fell out of the barrel. Now devoid of the weight of

the

> bricks, that barrel weighed approximately 50 lbs. I refer you again

to

> my

> weight. As you can imagine, I began a rapid descent, down the side

of

> the

> & nbs! p;building.

> In the vicinity of the third floor, I met the barrel coming up.

This

> accounts for the two fractured ankles, broken tooth and several

> lacerations of my legs and lower body. Here my luck began to change

> slightly. The encounter with the barrel seemed to slow me enough to

> lessen my injuries when I fell into the pile of bricks and

fortunately

> only three vertebrae were cracked.

> I am sorry to report, however, as I lay there on the pile of

bricks, in

> pain, unable to move, I again lost my composure and presence of

mind and

> let go of the rope and I lay there watching the empty barrel begin

its

> journey back down onto me. This explains the two broken legs.

> I hope this answers your inquiry.

>

>

>                               

>

>

>

>

> http://community.webtv.net/jowaca/JOSFAVORITEPICTURES

[Guest guest]

BIRDIE THEY JUST TOLD ME WHAT I ALREADY KNEW MOSTLY I HAVE A MESSED UP

BACK AND HAVE TO LIVE WITH IT. THEY DID SEND A REFERAL TO NUERO SURGEON

FOR WHAT GOOD THAT WILL DO ITS WAIT AND SEE AND TAKE TYENOL FOR PAIN. I

HAVE A COUPLE OF BULGING DISC AND SOME WIDENING IN SPOTS AND SOME OTHER

STUFF. THEY TOLD ME NOT TO MAKE ANY SUDDEN MOVES AS IF I DIDN'T HAVE

SENSE ENOUGH TO KNOW THAT ALREADY AND HE SENT MY RHUEMY A LETTER TELLING

HIM THE PAIN WAS NOT IN MY HEAD BUT THE STRESS OF LIVING IN CONSTANT

PAIN HAD A WAY OF MAKING ME AND ANYONE ELSE DEPRESSED. AND I HAVE AN

APPT SEPT5 WITH THE PAIN CLINIC I GOT IN QUICK FOR THE VA LOL. I ALSO

HAVE HORDED THE PAIN PILLS I GOT THE OTHER DAY SO I HAVE SOMETHING TO

HELP BETWEEN NOW AND THEN IF IT GETS REALLY BAD AGAIN. TELL JOY I AM

PRAYING SHE RECOVERS WELL AND FAST. MY AUNT WENT TO WORK TODAY AND SAID

IR WASN'T AS BAD AS SHE THOUGHT IT WOULD BE BUT THIS WEEK SHE DOESN'T

HAVE ANY KIDS BECAUSE THEY DON'T KNOW YET WHAT KIDS WILL NEED READING

TILL THEY FIND OUT WHICH ONES ARE NEW AND ALL THAT GOOD STUFF BUT SHE

HAS TO ORDER SUPPLIES AND TURN IN LESSON PLANS FOR HER CLASSES. WHAT I

DON'T GET IS HOW SHE CAN PLAN LESSONS WITHOUT KNOWING THE NEEDS OF THE

KIDS SHE WILL HAVE TO HER ITS EASY BUT SHE HAS ONLY BEEN DOING THIS FOR

34 YEARS THIS YEAR SO I GUESS THAT IS WHERE ALL THE EXPERENCE COME IN

HANDY. IF JOY IS ANYTHING LIKE MY AUNT SHE IS GOING TO HAVE A LOT OF

PAIN BUT MY AUNT SAID IT WAS NO WHERE AS BAD AS BEFORE SURGERY. LUV JO

                              

http://community.webtv.net/jowaca/JOSFAVORITEPICTURES

HI EVERYONE!! THANKS SO MUCH FOR THE PRAYERS AND WELL=WISHING!!

I AM SURE THAT THAT MADE ALL THE DIFFERENCE!!

JOY IS REALLY HURTING,

JO IT SOUNDS LIKE SHE ENDED UP WITH THE SAME KIND OF MAJOR SURGERY

YOUR AUNT DID! SHE HAD BOTH THE MULTIPLE CALCIUM DEPOSITS AND A TEAR

IN THE ROTARY CUP. SO THEY HAD TO DO ALL LOT MORE REPAIR WORK THAN

THEY PLANNED!! AND THEY PLAN ON HER GOING BACK TO WORK IN 2 WEEKS OR

LESS ALSO!! SHE IS HOME, BUT NOT REALLY WITH US, THEY HAVE HER ON

PRETTY HIGH DOSES OF PAIN KILLER! ME I AM UTTERLY EXHAUSTED, ONLY

GOT ABOUT 2 HOURS OF SLEEP LAST NITE, BUT DON'T CARE I AM SO GLAD TO

HAVE THIS OVER AND DONE WITH!!

CARO, SO SORRY TO HEAR ABOUT YOUR MOM, WILL BE SENDING POSITIVE

THOUGHTS AND PRAYERS YOUR WAY!! IT IS SO SAD WHEN ONES PARENT'S ARE

LIKE CHILDREN AND HURTING AND WE ARE POWERLESS! DONE THAT, HATED IT!!

KNOW THAT YOU ARE LOVED!

JO HOPE YOUR DOC VISIT GOES WELL, LET US KNOW MY FRIEND!

THERESA TAKE CARE OF YOURSELF AND TRY NOT TO LOSE YOUR BALANCE OKAY!!

HELEN, IF YOUR LISTENING, KNOW THAT YOUR ARE LOVED AND THAT I AM

PRAYING FOR YOU AND YOUR FAMILY!

BILLIE, WILL HAVE TO TAKE UP OUR LITTLE GAME AT A LATER DATE WHEN

THINGS CALM DOWN HER, BUT KNOW THAT I HAVE MARKED DOWN WHAT YOU SAID

AND WILL BE GETTING BACK TO YOU@LOL!!

KAREN, YOU SOUND AWFUL TIRED TO ME MY FRIEND, I HOPE YOU ARE BEING

GOOD TO YOU! YOUR PRAYERS WERE SO PRECIOUS, THANK YOU!

BETSY, WHERE ARE YOU? WOULD HAVE EXPECTED TO HEAR FROM YOU BY NOW!

HOPE YOUR SURGERY WENT WELL! LOVE YA SWEETIE!!

NICHOLE, HOW ARE YOU DOING, HOPE NO NEW DISASTERS IN YOUR

ENVIRONMENT!!

HOPE I DIDN'T FORGET ANYONE, IF I DID PLEASE FORGIVE ME, AS I AM

TYPING IN MY SLEEP!<G>

BTW; ABOUT THE TIME I WAS TAKING JOY AWAY FROM THE HOSPITAL, MY

YOUNGEST DAUGHTER WAS ENTERING THE HOSPITAL!! sHE HAS BEEN HAVING

HORRENDOUS STOMACH PAINS FOR QUITE SOMETIME AND MOSTLY IGNORING IT

(WHICH BOTH STOMACH PAINS AND USING IGNORING AS A TX RUNS IN THE

FAMILY!LOL!). SHE FINALLY WENT IN TODAY FOR AN ULTRASOUND AND THEY

DISCOVERED SOMETHING THEY DIDN'T LIKE, SO SENT HER FOR A CATSCAN!

WELL SHE HAD SOME KIND OF TUMOR NEAR HER INTESTINE. THEY DON'T KNOW

WHAT KIND, BUT ARE DOING EMERGENCY SURGERY TOMORROW TO REMOVE IT!!

ALSO HER 8 YEAR OLD SON, WHO IS MY YOUNGEST GRANDCHILD, IS GOING BACK

TO LIVE WITH HIS DAD IN PITTSBURG TOMORROW AS MY DAUGHTER CAN'T

MANAGE HIM!:-((((( HE IS SUPPOSED TO BE AT THE AIRPORT IN PORTLAND,

OREGON (ABOUT 200 MILES FROM WHERE WE LIVE) AT 8:30 AM TOMORROW

MORNING!!!

NEEDLESS TO SAY, ALL THIS HAPPENING AT ONCE IS TAKING ALL THE REST OF

THE FAMILY, THAT IS STILL ON THEIR FEET THAT IS!!:-), TO MANAGE!

WELL THAT IS THE LATEST CHAPTER OF THE ONGOING SAGA OF " BIRDIE'S

FAMILY " !!!<G>

LOVE, HUGS AND THANKS TO EVERYONE!!!

ROBIN

[Guest guest]

Smile they'll Wonder what your up too!!

Sharon

LOVE AND PRAYERS ROBIN, NOW JOYS AND YOUR SURGURIES ARE DONE YOU CAN

CONCENTRATE ON MENDING. ITS LONG AND FRUSTRATING BUT ITS ALL UP FROM

HERE!!!!!

HUGS AND LOVE

SHARON

(unknown)

HI EVERYONE!! THANKS SO MUCH FOR THE PRAYERS AND WELL=WISHING!!

I AM SURE THAT THAT MADE ALL THE DIFFERENCE!!

JOY IS REALLY HURTING,

JO IT SOUNDS LIKE SHE ENDED UP WITH THE SAME KIND OF MAJOR SURGERY

YOUR AUNT DID! SHE HAD BOTH THE MULTIPLE CALCIUM DEPOSITS AND A TEAR

IN THE ROTARY CUP. SO THEY HAD TO DO ALL LOT MORE REPAIR WORK THAN

THEY PLANNED!! AND THEY PLAN ON HER GOING BACK TO WORK IN 2 WEEKS OR

LESS ALSO!! SHE IS HOME, BUT NOT REALLY WITH US, THEY HAVE HER ON

PRETTY HIGH DOSES OF PAIN KILLER! ME I AM UTTERLY EXHAUSTED, ONLY

GOT ABOUT 2 HOURS OF SLEEP LAST NITE, BUT DON'T CARE I AM SO GLAD TO

HAVE THIS OVER AND DONE WITH!!

CARO, SO SORRY TO HEAR ABOUT YOUR MOM, WILL BE SENDING POSITIVE

THOUGHTS AND PRAYERS YOUR WAY!! IT IS SO SAD WHEN ONES PARENT'S ARE

LIKE CHILDREN AND HURTING AND WE ARE POWERLESS! DONE THAT, HATED IT!!

KNOW THAT YOU ARE LOVED!

JO HOPE YOUR DOC VISIT GOES WELL, LET US KNOW MY FRIEND!

THERESA TAKE CARE OF YOURSELF AND TRY NOT TO LOSE YOUR BALANCE OKAY!!

HELEN, IF YOUR LISTENING, KNOW THAT YOUR ARE LOVED AND THAT I AM

PRAYING FOR YOU AND YOUR FAMILY!

BILLIE, WILL HAVE TO TAKE UP OUR LITTLE GAME AT A LATER DATE WHEN

THINGS CALM DOWN HER, BUT KNOW THAT I HAVE MARKED DOWN WHAT YOU SAID

AND WILL BE GETTING BACK TO YOU@LOL!!

KAREN, YOU SOUND AWFUL TIRED TO ME MY FRIEND, I HOPE YOU ARE BEING

GOOD TO YOU! YOUR PRAYERS WERE SO PRECIOUS, THANK YOU!

BETSY, WHERE ARE YOU? WOULD HAVE EXPECTED TO HEAR FROM YOU BY NOW!

HOPE YOUR SURGERY WENT WELL! LOVE YA SWEETIE!!

NICHOLE, HOW ARE YOU DOING, HOPE NO NEW DISASTERS IN YOUR

ENVIRONMENT!!

HOPE I DIDN'T FORGET ANYONE, IF I DID PLEASE FORGIVE ME, AS I AM

TYPING IN MY SLEEP!<G>

BTW; ABOUT THE TIME I WAS TAKING JOY AWAY FROM THE HOSPITAL, MY

YOUNGEST DAUGHTER WAS ENTERING THE HOSPITAL!! sHE HAS BEEN HAVING

HORRENDOUS STOMACH PAINS FOR QUITE SOMETIME AND MOSTLY IGNORING IT

(WHICH BOTH STOMACH PAINS AND USING IGNORING AS A TX RUNS IN THE

FAMILY!LOL!). SHE FINALLY WENT IN TODAY FOR AN ULTRASOUND AND THEY

DISCOVERED SOMETHING THEY DIDN'T LIKE, SO SENT HER FOR A CATSCAN!

WELL SHE HAD SOME KIND OF TUMOR NEAR HER INTESTINE. THEY DON'T KNOW

WHAT KIND, BUT ARE DOING EMERGENCY SURGERY TOMORROW TO REMOVE IT!!

ALSO HER 8 YEAR OLD SON, WHO IS MY YOUNGEST GRANDCHILD, IS GOING BACK

TO LIVE WITH HIS DAD IN PITTSBURG TOMORROW AS MY DAUGHTER CAN'T

MANAGE HIM!:-((((( HE IS SUPPOSED TO BE AT THE AIRPORT IN PORTLAND,

OREGON (ABOUT 200 MILES FROM WHERE WE LIVE) AT 8:30 AM TOMORROW

MORNING!!!

NEEDLESS TO SAY, ALL THIS HAPPENING AT ONCE IS TAKING ALL THE REST OF

THE FAMILY, THAT IS STILL ON THEIR FEET THAT IS!!:-), TO MANAGE!

WELL THAT IS THE LATEST CHAPTER OF THE ONGOING SAGA OF " BIRDIE'S

FAMILY " !!!<G>

LOVE, HUGS AND THANKS TO EVERYONE!!!

ROBIN

[Guest guest]

JO, WISH THEY COULD DO MORE FOR YOUR BACK, YOU KNOW IT SURE SEEMS

LIKE THERE IS A LOT MORE THAT DOCS CAN'T DO ANYTHING ABOUT, THAN

THERE IS THINGS THEY CAN.

GLAD THAT AT LEAST THIS DOC RECOGNIZES THAT CONSTANT AND CHRONIC PAIN

IS DEPRESSING AND IS WILLING TO INFORM YOUR OTHER DOCS!!

YOU TAKE CARE OF YOURSELF MY FRIEND AND I WILL PRAY THAT YOUR PAIN

TAKE A HOLIDAY!

LOVE & HUGS, ROBIN

> BIRDIE THEY JUST TOLD ME WHAT I ALREADY KNEW MOSTLY I HAVE A MESSED

UP

> BACK AND HAVE TO LIVE WITH IT. THEY DID SEND A REFERAL TO NUERO

SURGEON

> FOR WHAT GOOD THAT WILL DO ITS WAIT AND SEE AND TAKE TYENOL FOR

PAIN. I

> HAVE A COUPLE OF BULGING DISC AND SOME WIDENING IN SPOTS AND SOME

OTHER

> STUFF. THEY TOLD ME NOT TO MAKE ANY SUDDEN MOVES AS IF I DIDN'T HAVE

> SENSE ENOUGH TO KNOW THAT ALREADY AND HE SENT MY RHUEMY A LETTER

TELLING

> HIM THE PAIN WAS NOT IN MY HEAD BUT THE STRESS OF LIVING IN CONSTANT

> PAIN HAD A WAY OF MAKING ME AND ANYONE ELSE DEPRESSED. AND I HAVE AN

> APPT SEPT5 WITH THE PAIN CLINIC I GOT IN QUICK FOR THE VA LOL. I

ALSO

> HAVE HORDED THE PAIN PILLS I GOT THE OTHER DAY SO I HAVE SOMETHING

TO

> HELP BETWEEN NOW AND THEN IF IT GETS REALLY BAD AGAIN. TELL JOY I AM

> PRAYING SHE RECOVERS WELL AND FAST. MY AUNT WENT TO WORK TODAY AND

SAID

> IR WASN'T AS BAD AS SHE THOUGHT IT WOULD BE BUT THIS WEEK SHE

DOESN'T

> HAVE ANY KIDS BECAUSE THEY DON'T KNOW YET WHAT KIDS WILL NEED

READING

> TILL THEY FIND OUT WHICH ONES ARE NEW AND ALL THAT GOOD STUFF BUT

SHE

> HAS TO ORDER SUPPLIES AND TURN IN LESSON PLANS FOR HER CLASSES.

WHAT I

> DON'T GET IS HOW SHE CAN PLAN LESSONS WITHOUT KNOWING THE NEEDS OF

THE

> KIDS SHE WILL HAVE TO HER ITS EASY BUT SHE HAS ONLY BEEN DOING THIS

FOR

> 34 YEARS THIS YEAR SO I GUESS THAT IS WHERE ALL THE EXPERENCE COME

IN

> HANDY. IF JOY IS ANYTHING LIKE MY AUNT SHE IS GOING TO HAVE A LOT OF

> PAIN BUT MY AUNT SAID IT WAS NO WHERE AS BAD AS BEFORE SURGERY. LUV

JO

>

>

>                               

>

>

>

>

> http://community.webtv.net/jowaca/JOSFAVORITEPICTURES

>

>

> HI EVERYONE!! THANKS SO MUCH FOR THE PRAYERS AND WELL=WISHING!!

> I AM SURE THAT THAT MADE ALL THE DIFFERENCE!!

> JOY IS REALLY HURTING,

> JO IT SOUNDS LIKE SHE ENDED UP WITH THE SAME KIND OF MAJOR SURGERY

> YOUR AUNT DID! SHE HAD BOTH THE MULTIPLE CALCIUM DEPOSITS AND A

TEAR

> IN THE ROTARY CUP. SO THEY HAD TO DO ALL LOT MORE REPAIR WORK THAN

> THEY PLANNED!! AND THEY PLAN ON HER GOING BACK TO WORK IN 2 WEEKS

OR

> LESS ALSO!! SHE IS HOME, BUT NOT REALLY WITH US, THEY HAVE HER ON

> PRETTY HIGH DOSES OF PAIN KILLER! ME I AM UTTERLY EXHAUSTED, ONLY

> GOT ABOUT 2 HOURS OF SLEEP LAST NITE, BUT DON'T CARE I AM SO GLAD

TO

> HAVE THIS OVER AND DONE WITH!!

>

> CARO, SO SORRY TO HEAR ABOUT YOUR MOM, WILL BE SENDING POSITIVE

> THOUGHTS AND PRAYERS YOUR WAY!! IT IS SO SAD WHEN ONES PARENT'S

ARE

> LIKE CHILDREN AND HURTING AND WE ARE POWERLESS! DONE THAT, HATED

IT!!

> KNOW THAT YOU ARE LOVED!

>

> JO HOPE YOUR DOC VISIT GOES WELL, LET US KNOW MY FRIEND!

>

> THERESA TAKE CARE OF YOURSELF AND TRY NOT TO LOSE YOUR BALANCE

OKAY!!

>

> HELEN, IF YOUR LISTENING, KNOW THAT YOUR ARE LOVED AND THAT I AM

> PRAYING FOR YOU AND YOUR FAMILY!

>

> BILLIE, WILL HAVE TO TAKE UP OUR LITTLE GAME AT A LATER DATE WHEN

> THINGS CALM DOWN HER, BUT KNOW THAT I HAVE MARKED DOWN WHAT YOU

SAID

> AND WILL BE GETTING BACK TO YOU@LOL!!

>

> KAREN, YOU SOUND AWFUL TIRED TO ME MY FRIEND, I HOPE YOU ARE BEING

> GOOD TO YOU! YOUR PRAYERS WERE SO PRECIOUS, THANK YOU!

>

> BETSY, WHERE ARE YOU? WOULD HAVE EXPECTED TO HEAR FROM YOU BY NOW!

> HOPE YOUR SURGERY WENT WELL! LOVE YA SWEETIE!!

>

> NICHOLE, HOW ARE YOU DOING, HOPE NO NEW DISASTERS IN YOUR

> ENVIRONMENT!!

>

> HOPE I DIDN'T FORGET ANYONE, IF I DID PLEASE FORGIVE ME, AS I AM

> TYPING IN MY SLEEP!<G>

>

> BTW; ABOUT THE TIME I WAS TAKING JOY AWAY FROM THE HOSPITAL, MY

> YOUNGEST DAUGHTER WAS ENTERING THE HOSPITAL!! sHE HAS BEEN HAVING

> HORRENDOUS STOMACH PAINS FOR QUITE SOMETIME AND MOSTLY IGNORING IT

> (WHICH BOTH STOMACH PAINS AND USING IGNORING AS A TX RUNS IN THE

> FAMILY!LOL!). SHE FINALLY WENT IN TODAY FOR AN ULTRASOUND AND THEY

> DISCOVERED SOMETHING THEY DIDN'T LIKE, SO SENT HER FOR A CATSCAN!

> WELL SHE HAD SOME KIND OF TUMOR NEAR HER INTESTINE. THEY DON'T KNOW

> WHAT KIND, BUT ARE DOING EMERGENCY SURGERY TOMORROW TO REMOVE IT!!

> ALSO HER 8 YEAR OLD SON, WHO IS MY YOUNGEST GRANDCHILD, IS GOING

BACK

> TO LIVE WITH HIS DAD IN PITTSBURG TOMORROW AS MY DAUGHTER CAN'T

> MANAGE HIM!:-((((( HE IS SUPPOSED TO BE AT THE AIRPORT IN

PORTLAND,

> OREGON (ABOUT 200 MILES FROM WHERE WE LIVE) AT 8:30 AM TOMORROW

> MORNING!!!

> NEEDLESS TO SAY, ALL THIS HAPPENING AT ONCE IS TAKING ALL THE REST

OF

> THE FAMILY, THAT IS STILL ON THEIR FEET THAT IS!!:-), TO MANAGE!

>

> WELL THAT IS THE LATEST CHAPTER OF THE ONGOING SAGA OF " BIRDIE'S

> FAMILY " !!!<G>

>

> LOVE, HUGS AND THANKS TO EVERYONE!!!

> ROBIN

>

>

>

[Guest guest]

OMG, SHARON!! I KNEW MY FOGGY BRAIN WAS FORGETTING SOMEONE!!:-)

HOW ARE YOU DOING SWEETIE!

LOVE & HUGS, ROBIN

> Smile they'll Wonder what your up too!!

> Sharon

> LOVE AND PRAYERS ROBIN, NOW JOYS AND YOUR SURGURIES ARE DONE YOU

CAN

> CONCENTRATE ON MENDING. ITS LONG AND FRUSTRATING BUT ITS ALL UP FROM

> HERE!!!!!

> HUGS AND LOVE

> SHARON

> (unknown)

>

>

> HI EVERYONE!! THANKS SO MUCH FOR THE PRAYERS AND WELL=WISHING!!

> I AM SURE THAT THAT MADE ALL THE DIFFERENCE!!

> JOY IS REALLY HURTING,

> JO IT SOUNDS LIKE SHE ENDED UP WITH THE SAME KIND OF MAJOR SURGERY

> YOUR AUNT DID! SHE HAD BOTH THE MULTIPLE CALCIUM DEPOSITS AND A

TEAR

> IN THE ROTARY CUP. SO THEY HAD TO DO ALL LOT MORE REPAIR WORK THAN

> THEY PLANNED!! AND THEY PLAN ON HER GOING BACK TO WORK IN 2 WEEKS

OR

> LESS ALSO!! SHE IS HOME, BUT NOT REALLY WITH US, THEY HAVE HER ON

> PRETTY HIGH DOSES OF PAIN KILLER! ME I AM UTTERLY EXHAUSTED, ONLY

> GOT ABOUT 2 HOURS OF SLEEP LAST NITE, BUT DON'T CARE I AM SO GLAD

TO

> HAVE THIS OVER AND DONE WITH!!

>

> CARO, SO SORRY TO HEAR ABOUT YOUR MOM, WILL BE SENDING POSITIVE

> THOUGHTS AND PRAYERS YOUR WAY!! IT IS SO SAD WHEN ONES PARENT'S

ARE

> LIKE CHILDREN AND HURTING AND WE ARE POWERLESS! DONE THAT, HATED

IT!!

> KNOW THAT YOU ARE LOVED!

>

> JO HOPE YOUR DOC VISIT GOES WELL, LET US KNOW MY FRIEND!

>

> THERESA TAKE CARE OF YOURSELF AND TRY NOT TO LOSE YOUR BALANCE

OKAY!!

>

> HELEN, IF YOUR LISTENING, KNOW THAT YOUR ARE LOVED AND THAT I AM

> PRAYING FOR YOU AND YOUR FAMILY!

>

> BILLIE, WILL HAVE TO TAKE UP OUR LITTLE GAME AT A LATER DATE WHEN

> THINGS CALM DOWN HER, BUT KNOW THAT I HAVE MARKED DOWN WHAT YOU

SAID

> AND WILL BE GETTING BACK TO YOU@LOL!!

>

> KAREN, YOU SOUND AWFUL TIRED TO ME MY FRIEND, I HOPE YOU ARE BEING

> GOOD TO YOU! YOUR PRAYERS WERE SO PRECIOUS, THANK YOU!

>

> BETSY, WHERE ARE YOU? WOULD HAVE EXPECTED TO HEAR FROM YOU BY NOW!

> HOPE YOUR SURGERY WENT WELL! LOVE YA SWEETIE!!

>

> NICHOLE, HOW ARE YOU DOING, HOPE NO NEW DISASTERS IN YOUR

> ENVIRONMENT!!

>

> HOPE I DIDN'T FORGET ANYONE, IF I DID PLEASE FORGIVE ME, AS I AM

> TYPING IN MY SLEEP!<G>

>

> BTW; ABOUT THE TIME I WAS TAKING JOY AWAY FROM THE HOSPITAL, MY

> YOUNGEST DAUGHTER WAS ENTERING THE HOSPITAL!! sHE HAS BEEN HAVING

> HORRENDOUS STOMACH PAINS FOR QUITE SOMETIME AND MOSTLY IGNORING IT

> (WHICH BOTH STOMACH PAINS AND USING IGNORING AS A TX RUNS IN THE

> FAMILY!LOL!). SHE FINALLY WENT IN TODAY FOR AN ULTRASOUND AND THEY

> DISCOVERED SOMETHING THEY DIDN'T LIKE, SO SENT HER FOR A CATSCAN!

> WELL SHE HAD SOME KIND OF TUMOR NEAR HER INTESTINE. THEY DON'T KNOW

> WHAT KIND, BUT ARE DOING EMERGENCY SURGERY TOMORROW TO REMOVE IT!!

> ALSO HER 8 YEAR OLD SON, WHO IS MY YOUNGEST GRANDCHILD, IS GOING

BACK

> TO LIVE WITH HIS DAD IN PITTSBURG TOMORROW AS MY DAUGHTER CAN'T

> MANAGE HIM!:-((((( HE IS SUPPOSED TO BE AT THE AIRPORT IN

PORTLAND,

> OREGON (ABOUT 200 MILES FROM WHERE WE LIVE) AT 8:30 AM TOMORROW

> MORNING!!!

> NEEDLESS TO SAY, ALL THIS HAPPENING AT ONCE IS TAKING ALL THE REST

OF

> THE FAMILY, THAT IS STILL ON THEIR FEET THAT IS!!:-), TO MANAGE!

>

> WELL THAT IS THE LATEST CHAPTER OF THE ONGOING SAGA OF " BIRDIE'S

> FAMILY " !!!<G>

>

> LOVE, HUGS AND THANKS TO EVERYONE!!!

> ROBIN

>

>

>

[Guest guest]

THANKS BIRDIE !!! I HAVE OVER THE YEARS HEARD THAT SO MUCH I KNOW ITS

COMING BEFORE THEY EVEN SAY IT !!! I HOPE JOY AND YOUR DAUGHTER ARE BOTH

DOING GOOD TONIGHT. LUV JO

                              

http://community.webtv.net/jowaca/JOSFAVORITEPICTURES

JO, WISH THEY COULD DO MORE FOR YOUR BACK, YOU KNOW IT SURE SEEMS

LIKE THERE IS A LOT MORE THAT DOCS CAN'T DO ANYTHING ABOUT, THAN

THERE IS THINGS THEY CAN.

GLAD THAT AT LEAST THIS DOC RECOGNIZES THAT CONSTANT AND CHRONIC PAIN

IS DEPRESSING AND IS WILLING TO INFORM YOUR OTHER DOCS!!

YOU TAKE CARE OF YOURSELF MY FRIEND AND I WILL PRAY THAT YOUR PAIN

TAKE A HOLIDAY!

LOVE & HUGS, ROBIN

> BIRDIE THEY JUST TOLD ME WHAT I ALREADY KNEW MOSTLY I HAVE A MESSED

UP

> BACK AND HAVE TO LIVE WITH IT. THEY DID SEND A REFERAL TO NUERO

SURGEON

> FOR WHAT GOOD THAT WILL DO ITS WAIT AND SEE AND TAKE TYENOL FOR

PAIN. I

> HAVE A COUPLE OF BULGING DISC AND SOME WIDENING IN SPOTS AND SOME

OTHER

> STUFF. THEY TOLD ME NOT TO MAKE ANY SUDDEN MOVES AS IF I DIDN'T HAVE

> SENSE ENOUGH TO KNOW THAT ALREADY AND HE SENT MY RHUEMY A LETTER

TELLING

> HIM THE PAIN WAS NOT IN MY HEAD BUT THE STRESS OF LIVING IN CONSTANT

> PAIN HAD A WAY OF MAKING ME AND ANYONE ELSE DEPRESSED. AND I HAVE AN

> APPT SEPT5 WITH THE PAIN CLINIC I GOT IN QUICK FOR THE VA LOL. I

ALSO

> HAVE HORDED THE PAIN PILLS I GOT THE OTHER DAY SO I HAVE SOMETHING

TO

> HELP BETWEEN NOW AND THEN IF IT GETS REALLY BAD AGAIN. TELL JOY I AM

> PRAYING SHE RECOVERS WELL AND FAST. MY AUNT WENT TO WORK TODAY AND

SAID

> IR WASN'T AS BAD AS SHE THOUGHT IT WOULD BE BUT THIS WEEK SHE

DOESN'T

> HAVE ANY KIDS BECAUSE THEY DON'T KNOW YET WHAT KIDS WILL NEED

READING

> TILL THEY FIND OUT WHICH ONES ARE NEW AND ALL THAT GOOD STUFF BUT

SHE

> HAS TO ORDER SUPPLIES AND TURN IN LESSON PLANS FOR HER CLASSES.

WHAT I

> DON'T GET IS HOW SHE CAN PLAN LESSONS WITHOUT KNOWING THE NEEDS OF

THE

> KIDS SHE WILL HAVE TO HER ITS EASY BUT SHE HAS ONLY BEEN DOING THIS

FOR

> 34 YEARS THIS YEAR SO I GUESS THAT IS WHERE ALL THE EXPERENCE COME

IN

> HANDY. IF JOY IS ANYTHING LIKE MY AUNT SHE IS GOING TO HAVE A LOT OF

> PAIN BUT MY AUNT SAID IT WAS NO WHERE AS BAD AS BEFORE SURGERY. LUV

JO

>

>

>                               

>

>

>

>

> http://community.webtv.net/jowaca/JOSFAVORITEPICTURES

>

>

> HI EVERYONE!! THANKS SO MUCH FOR THE PRAYERS AND WELL=WISHING!!

> I AM SURE THAT THAT MADE ALL THE DIFFERENCE!!

> JOY IS REALLY HURTING,

> JO IT SOUNDS LIKE SHE ENDED UP WITH THE SAME KIND OF MAJOR SURGERY

> YOUR AUNT DID! SHE HAD BOTH THE MULTIPLE CALCIUM DEPOSITS AND A

TEAR

> IN THE ROTARY CUP. SO THEY HAD TO DO ALL LOT MORE REPAIR WORK THAN

> THEY PLANNED!! AND THEY PLAN ON HER GOING BACK TO WORK IN 2 WEEKS

OR

> LESS ALSO!! SHE IS HOME, BUT NOT REALLY WITH US, THEY HAVE HER ON

> PRETTY HIGH DOSES OF PAIN KILLER! ME I AM UTTERLY EXHAUSTED, ONLY

> GOT ABOUT 2 HOURS OF SLEEP LAST NITE, BUT DON'T CARE I AM SO GLAD

TO

> HAVE THIS OVER AND DONE WITH!!

>

> CARO, SO SORRY TO HEAR ABOUT YOUR MOM, WILL BE SENDING POSITIVE

> THOUGHTS AND PRAYERS YOUR WAY!! IT IS SO SAD WHEN ONES PARENT'S

ARE

> LIKE CHILDREN AND HURTING AND WE ARE POWERLESS! DONE THAT, HATED

IT!!

> KNOW THAT YOU ARE LOVED!

>

> JO HOPE YOUR DOC VISIT GOES WELL, LET US KNOW MY FRIEND!

>

> THERESA TAKE CARE OF YOURSELF AND TRY NOT TO LOSE YOUR BALANCE

OKAY!!

>

> HELEN, IF YOUR LISTENING, KNOW THAT YOUR ARE LOVED AND THAT I AM

> PRAYING FOR YOU AND YOUR FAMILY!

>

> BILLIE, WILL HAVE TO TAKE UP OUR LITTLE GAME AT A LATER DATE WHEN

> THINGS CALM DOWN HER, BUT KNOW THAT I HAVE MARKED DOWN WHAT YOU

SAID

> AND WILL BE GETTING BACK TO YOU@LOL!!

>

> KAREN, YOU SOUND AWFUL TIRED TO ME MY FRIEND, I HOPE YOU ARE BEING

> GOOD TO YOU! YOUR PRAYERS WERE SO PRECIOUS, THANK YOU!

>

> BETSY, WHERE ARE YOU? WOULD HAVE EXPECTED TO HEAR FROM YOU BY NOW!

> HOPE YOUR SURGERY WENT WELL! LOVE YA SWEETIE!!

>

> NICHOLE, HOW ARE YOU DOING, HOPE NO NEW DISASTERS IN YOUR

> ENVIRONMENT!!

>

> HOPE I DIDN'T FORGET ANYONE, IF I DID PLEASE FORGIVE ME, AS I AM

> TYPING IN MY SLEEP!<G>

>

> BTW; ABOUT THE TIME I WAS TAKING JOY AWAY FROM THE HOSPITAL, MY

> YOUNGEST DAUGHTER WAS ENTERING THE HOSPITAL!! sHE HAS BEEN HAVING

> HORRENDOUS STOMACH PAINS FOR QUITE SOMETIME AND MOSTLY IGNORING IT

> (WHICH BOTH STOMACH PAINS AND USING IGNORING AS A TX RUNS IN THE

> FAMILY!LOL!). SHE FINALLY WENT IN TODAY FOR AN ULTRASOUND AND THEY

> DISCOVERED SOMETHING THEY DIDN'T LIKE, SO SENT HER FOR A CATSCAN!

> WELL SHE HAD SOME KIND OF TUMOR NEAR HER INTESTINE. THEY DON'T KNOW

> WHAT KIND, BUT ARE DOING EMERGENCY SURGERY TOMORROW TO REMOVE IT!!

> ALSO HER 8 YEAR OLD SON, WHO IS MY YOUNGEST GRANDCHILD, IS GOING

BACK

> TO LIVE WITH HIS DAD IN PITTSBURG TOMORROW AS MY DAUGHTER CAN'T

> MANAGE HIM!:-((((( HE IS SUPPOSED TO BE AT THE AIRPORT IN

PORTLAND,

> OREGON (ABOUT 200 MILES FROM WHERE WE LIVE) AT 8:30 AM TOMORROW

> MORNING!!!

> NEEDLESS TO SAY, ALL THIS HAPPENING AT ONCE IS TAKING ALL THE REST

OF

> THE FAMILY, THAT IS STILL ON THEIR FEET THAT IS!!:-), TO MANAGE!

>

> WELL THAT IS THE LATEST CHAPTER OF THE ONGOING SAGA OF " BIRDIE'S

> FAMILY " !!!<G>

>

> LOVE, HUGS AND THANKS TO EVERYONE!!!

> ROBIN

>

>

>

[Guest guest]

In a message dated 10/22/2001 12:44:47 PM Pacific Daylight Time,

mikeseither@... writes:

> Well, that's a thumbnail. I AM DIFFERENT FROM YOU.

> So don't exactly expect your system to mirror mine.

> However... if your story seems similar to mine, then I

> heartily recommend you try what I've done and let

> me know how you make out. I hope my blurb can help

> you.

Mike,

THANK YOU so much for posting all your information.

I've been in what must be vagal afib for a little over 5 weeks

now. When I told the doctor my afib was vagal and what

he first prescribed was contraindicated and I stopped it......he

said vagal was just a theory so far......right!!! Now things are

going a bit better.

Sometimes I inventory stores for extra money and this morning

was the first morning one since my afib began...... although I made

it, it seemed harder to have the energy early in the morning instead

of how I feel doing an evening store. I guess it is somewhat like

exercise, although hiking or running might be more pleasant. I spent

about 7 hours on my feet this morning.... Saturday night I walked a

store for 9 hours.... very tiring.

The ideas about what to eat are very much appreciated and I will

be experimenting with those.

Let me share what happened with me.....it helped greatly although

may sound crazy and not sure about it working with anyone else.

When this first began I had terrible problems sleeping at night.....it

seemed like I could not get enough air. I would wake up in the middle

of the night starving for air. Usually I would drink a little juice and some

water and try sleeping again. My abdomen hurt and my digestion was

not too good. One night we had some grape juice mix that actually

seemed to make it worse so the next time I decided to try some

Noni Juice that I had from a networking company called Neways. I had

discovered I still had a couple bottles. A while ago I had tried some

at night but it seemed to give me too much energy.

This time I just took less than an ounce of the Noni with some water.

Now this may sound crazy...okay....but as soon as I drank it

it seemed my throat or esophagus relaxed......and I slept for five

hours straight.. I felt better in the morning. The next night I tried

it and I slept straight through till morning. I no longer feel like I am

starving for air. I sleep better. A lot of my abdominal problems are

gone or lessened. So I guess I will stick with drinking some

of that Noni juice, although now that part of my symptoms seems to

be gone.

Best wishes.

Bill Utterback

South San Francisco

[Guest guest]

Re: (unknown)

<<< When this first began I had terrible problems sleeping at night.....it

seemed like I could not get enough air. I would wake up in the middle

of the night starving for air. Usually I would drink a little juice and

some

water and try sleeping again. My abdomen hurt and my digestion was

not too good.

==== I assume you were in afib at the time?, which would explain the lack of

oxygen? === I used to drink oj or grapefruit juice at night and take

vitamins and that stiumlated me so bad and caused acid reflux AND elevated

my blood sugar, all of which trigger the afib. I lay off juice at night.

Of course grape juice is high in natural sugar and sugar is a definite

trigger. Behavior alteration takes time.

One night we had some grape juice mix that actually

seemed to make it worse so the next time I decided to try some

Noni Juice that I had from a networking company called Neways. I had

discovered I still had a couple bottles. A while ago I had tried some

at night but it seemed to give me too much energy.

This time I just took less than an ounce of the Noni with some water.

Now this may sound crazy...okay....but as soon as I drank it

it seemed my throat or esophagus relaxed......and I slept for five

hours straight.. I felt better in the morning. The next night I tried

it and I slept straight through till morning. I no longer feel like I am

starving for air. I sleep better. A lot of my abdominal problems are

gone or lessened. So I guess I will stick with drinking some

of that Noni juice, although now that part of my symptoms seems to

be gone.

======== I'll look it up. Thanks for the tip. And Bill, good luck. Let me

know if I can help.

Web Page http://groups.yahoo.com/group/AFIBsupport

For more information: http://www.dialsolutions.com/af

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[Guest guest]

(unknown)

Mike, what do you do about dinner? Something lighter than the

Stouffer's stuff? Avoid eating before going to sleep?

Good question. I realize I left out a few things in my haste. I have

attempted to make my meals of a reasonable size and lay off things

that cause acid reflux and adrenal stiumlation. Fried food is hard to

disgest. So is greasy food. Fruits and fruit juices are acidic and

stimulate you. Its pretty much a standard low fat, high fiber diet with

grilled chicken or fish, a starch (obviously complex is best) and a

veggie. I love cookies but have cut back a great deal and chocolate is

out altogether. I still sneak a couple of cookies but try to keep the

sugar level down as much as possible. Fruit juice also has a high

level of natural sugar. I still have a glass of milk (low fat 1% or skim)

because milk doesn't typically upset my stomach but it can easily be

a problem for some people.

I feel strongly that the minerals I am taking are helping me.

Especially the potassium and magnesium. If you supplement

calcium, you deplete your magnesium automatically. These minerals

form electrolytes which convey the electrons from one cell to the other

in the heart and cause it to beat. I think it gets nervous when these

minerals are not in balance. Soda pop, with carbolic acid prevents

mineral absorbtion in the stomach, so lay off the soda, diet or no

caffeine or not. Again, I'm also off of vitamin supplements and I think

this has helped too.

Let me know what you learn too and good luck and best wishes.

Mike

Web Page http://groups.yahoo.com/group/AFIBsupport

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[Guest guest]

(unknown)

Mike,

Thanks very much for posting that info. What you say tallies with

some of my experience and I am going to try your ideas.

It is really useful when people take the time to post detailed

success stories like this.

=== I was always encouraged by the postings of others and by the fine

websites people maintain to help us. It was critical for me to get this

information which was contrary to most afib problems which are directly

heart related. This always confuses my cardiologist whose heart (ha ha) is

in the right place but is unfamiliar with solutions to proxymal lone afib

(other than goofy stuff like ablation, which is a last resort technique, in

my opinion)

One item - I think the citrical plus d you mention is actually half

that dose.

===== You are absolutely correct. I didn't read the bottle very carefully.

I have read that supplementing calcium automatically depletes magnesium.

The more calcium you take, the more magnesium you will need to supplement

too just to offset the loss of the magnesium. Because I ran and had muscle

cramps my doc always wanted me to have plenty calcium but I see BALANCE is

so important. The potassium supplement seemed to level me out the best.

One banana a day and two potasiums and bingo, it calmed me down. Course all

the other stuff, in concert was necessary too.

In fine print on the bottle it says " serving size two

tablets. " I have been taking that but am currently seeing what

happens if I omit it (along with omiting vit c and vit e) due to

discussions in here about supplements and calcium causing problems.

==== I am still taking one citracal but along with the three magnesiums. Of

course too much magnesium loosens the stool but I think 750mg is a pretty

safe amount. My wife is taking 1000mg because she has migraines and its

helping her.

Good luck Trudy.

Let me know if you have a break-through.

Mike

Web Page http://groups.yahoo.com/group/AFIBsupport

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[Guest guest]

Hi Andy. It's possible that red wine could bring on afib sometimes in some

people; you will have to do your own experiment. How do you like that for a

completely non-answer. I have noticed that what may appear to be a trigger on

one occasion is not a trigger on others. It's one of life's great mysteries.

My very first afib episode came on after drinking a St. i Girl beer. I quit

drinking after that...until a few years later at a dinner I allowed myself a

fine white wine and thoroughly enjoyed it. Now I partake when a festive

occasion arises, but certainly not like in the distant past when every occasion

was an opportunity to drink. I wonder if years of alcohol consumption

contributed to the afib, but mostly I am in denial over the possibility since of

course I hate to blame myself. I have heard that red wine has salubrious

qualities, though for me the tannins in red wine aggravate my allergies. You

are in a very interesting business, and I suppose that tasting is an integral

part of it. Sandy

(unknown)

Hi Guys

I would like to start out by saying thanks; I'm new to afib and

your comments to my posts have really helped. I'm in the wine

business and I know that we should stay away from alcohol, will one

glass of red wine once or twice a week bring on afib.

Thanks Andy!

[Guest guest]

My experience has been that if I sleep on my right side (completely avoiding

the left side) my Afib is much better - some nights I don't get it at all.

Sharon in El Paso

[Guest guest]

Hi Andy,

I have the same feeling all the time of the " gerbil " running around for 5-10

seconds at a time, which I think are short bursts of afib, and I also have it

when I am in afib for hours at a time. I guess it's just part of having afib.

I'm sure there is an elaborate physiological description of what is happening to

cause this feeling. I know the atria are quivering, for one thing. I also have

MVP, which causes certain sensations in my heart, but they are more like single

extra beats from time to time, rather than the gerbil scrambling around in

there. It probably wouldn't hurt to to ask your cardiologist about what you're

feeling. Keep us posted as to how you're doing! Thanks, Sandy

(unknown)

On Dec. 8th I went into Afib it felt like a gerbil was running around

in my heart and then my heart started beating fast I went to the

hospital and spent the night in the ICU. I converted on my own about

10 hours later. Last night I got that gerbil feeling again for about

5 or 10 seconds and then it stopped, I did not get the racing heart.

Was that Afib? Is this something I should be concerned about? Has

anyone else had this feeling? I have MVP my cardiologist has me on

toprol 25mg I just had a stress echo done and everything was fine.

Thanks Andy!

[Guest guest]

I spoke to last week. She's between houses and computers at the moment. SHe was doing pretty well. Looking forward to getting her house on the beach. She will be back on board as soon as she can be. Leanne uip 1/03Peggy wrote: Does anyone know anything about Randel ?

Sponsored Link Mortgage rates as low as 4.625% - $150,000 loan for $579 a month. Intro-*Terms