Re:

[Guest guest]

, when I had pain like that it was my pancreas, you might wanna check

that out. I have had so many attacks that now I just figure when they put me

in the hospital they just have me rest it for a few days and not eat or

drink, and heck I can do that at home. Except of couse that they have better

pain meds and I dont have to do laundry there, LOL!

a c

[Guest guest]

Who wants a puppy!!!!!!!??????

Not that I want one I already have three too many, but what kind of puppies do you have?? Just curious.

Take care

Carlasue

[Guest guest]

Carolyn,

It would be great if you can find out where she is. I sent one card to her,

but we shouldn't let her think that we've forgotten about her.

Dolores

Re:

> --Dolores, Last time I talked with her which was about a month ago,

> that next Monday she was going to an inpatient rehab at a Hospital in

> Portland Oregon and I can't remember which one, but I will get on

> line and find it. I told her I would try to get ahold of her there. I

> just haven't done it yet. I can't remember how long she was going to

> be there. I might have to call her home and try to get some

> information about her whereabouts. did that last time and I

> don't know if she knows anything or not. Carolyn- In PLS-

> FRIENDS , " Dolores Carron " <d.carron@w...> wrote:

> > Is back on line (or does anyone know her

> whereabouts)? The

> > last I knew, she was in a rehab facility. That was quite awhile

> ago. I

> > hope all is well.

> > Dolores

>

>

>

>

>

>

[Guest guest]

Hello , My name is Flora and I have PLS. Sorry about your dx but you

sound like you are ready to battle this yucky disease. Your attitude I think

is what gets us through a lot of the difficult times. You will find this group

a loving and caring group and full of knowledge so ask us anything you care

to discuss...........

Flora

[Guest guest]

Welcome to our group, . I am sorry about your diagnosis, but hope that

you'll continue to have a positive attitude. That is important. Hopefully

your " fight " will be a successful one and for a very long time. We all

continue to pray for a cure, too. Is there anything that you'd like to ask

about? You'll find that the name PLS " Friends " is an appropriate name.

Everyone is willing to share their experiences and knowledge, and even their

recipes and jokes.

Dolores (PLSer in CT)

> Hello,

>

> My name is Granger and I am 43 years old. I was diagnosed with ALS

in January and am happy to be joining a support group. I know I have a

tough road ahead of me but I'm a fighter and have hope that a cure for this

disease will be found soon.

>

> Thanks for having me.

>

>

>

>

>

[Guest guest]

Hi :

Welcome to the kindest, most informative group around. Glad you found us

but sorry it had to be because of a diagnosis of ALS at such an young age.

You have one very good thing going for you and that is that you are a

fighter. I believe a positive attitude when you are facing any serious

illness can only help us and also others around us. That doesn't mean we

are not allowed 'down days' it just means that after those days we pick

ourselves up and move ahead and hang onto the hope that they will find a

cure in the near future.

Will look forward to seeing other posts from you.

Jo (Canada)

> Hello,

>

> My name is Granger and I am 43 years old. I was diagnosed with ALS

in January and am happy to be joining a support group. I know I have a

tough road ahead of me but I'm a fighter and have hope that a cure for this

disease will be found soon.

>

> Thanks for having me.

>

>

>

>

>

[Guest guest]

,

I also have ALS. I want to let you know that there are others on this group

with ALS. I am also on the living-with-alsyahoogroups (DOT) ...

E-mail Address(es):

living-with-als you subscribe to that the same way you

subscribed to the PLS group. You will find it a helpful group also. It is

moderated and so is slower to see your posts. Another site is called

www.Braintalk.com got there and sign in . Go throught the necessary steps to

get to the ALS group. There is good information there. They are way ahead of

most of the ALS sites on trials and tests.

Feel free to email me personally also if you would like to.

Sherrykbeau@...

You will need all the support you can get.

Sherry

Sherry Ketzbeau

Lindenwood Acres

http://lindenwoods.tripod.com/index.html

-----

From: Granger

To: PLS-FRIENDS

Sent: Sunday, May 25, 2003 9:44 PM

Subject:

[Guest guest]

HI RACHEL,

WELCOME TO THE GROUP. I AM SO SORRY FOR YOUR DX.

MY HUSBAND ALSO HAS ALS. HE STARTED OUT WITH A PLS DX. IN 2000 AND LAST

YEAR WAS CHANGED TO ALS. DO YOU HAVE HELP.

DON IS GETTING PRETTY ADVANCED. HE NOW HAS A FEEDING TUBE. FOR LIQUIDS. HE

IS ABLE TO EAT SOFT FOODS YET AND THICKEN LIQUIDS. WITH SOME EMAGINATION I

HAVE BEEN ABLE TO ADJUST MOST EVERYTHIG SO THAT HE IS ABLE TO ENJOY HIS

FOODS. I USE BABY CERIAL TO THICKEN MILK BASED FOODS. RICE LEAVES LESS OF

A FLAVOR BEHIND. INSTANT POTATOES WORKS WELL TO THICKEN SOUPS. AND THICK

IT FOR JUICES. HE'S HAD SOME OTHER HEALTH PROBLEMS CAUSED BY THE INABILITY

TO MOVE LIKE BEFORE. AND HE HIS W/C BOUND. WE JUST GOT A VAN WITH A

LIFT WITH A LOT OF HELP FROM SOME FRIENDS. AFTER ALMOST A YEAR OF BEING

HOME BOUND IT IS SO NICE TO BEABLE TO GET HIM OUT AGAIN.

RACHEL, IF WE CAN BE OF ANY ASSISTANCE PLEASE DON'T HESITATE TO ASK. YOU

MAY CONTACK US ON AN INDIVIDUAL BASIS IF YOU WOULD LIKE. BLUCAS @WINESBURG

COM

HANG IN THERE.

LOVE

BONNIE CAL

DON PAL DX 9/03

--

Hello,

My name is Granger and I am 43 years old. I was diagnosed with ALS in

January and am happy to be joining a support group. I know I have a tough

road ahead of me but I'm a fighter and have hope that a cure for this

disease will be found soon.

Thanks for having me.

[Guest guest]

Carolyn,

I have an idea. If you can come up with 's home address, we can send

cards and letters and the post office will send them to her forwarding

address. Even if she is unable to respond, at least she will know that she

is not forgotten.

Dolores

> I called her house and the number has been disconnected. I assume it

> has been sold as she told me it was up for sale. Last time I talked

> to her which was a couple of months ago she told me she was going

> into a hospital in Portland, Ore. for inpatient re-hab. I tried to

> remember the name, but can't. I don't think they would give me any

> information because of that new privacy act. I guess all we can hope

> for is someday she sill write us here again. Carolyn

>

>

>

>

>

>

[Guest guest]

CAROLYN,

SEND A SHORT NOTE TO EACH OF THE HOSPITALS WHERE YOU THINK SHE IS. MAKE

SURE YOU INCLUDE YOUR RETURN ADDRESS. IF IT DOESN'T COME BACK YOU PROBABLY

FOUND HER. IF YOU DO GET SOME BACK IT WOULD MEAN SHE ISN'T THERE. IF SHE

WAS THEY MAY FORWARD IT TO HER.

GOOD LUCK

LOVE

BONNIE

[Guest guest]

Would Jane King please e-mail us at: JunePGray@... ref Vicodan (my

husband takes it for pain). Please write us or call us at:

Thanks,

June in Tallahassee I have lost your e-mail.

[Guest guest]

June,

Yes I do take Vicodan for pain. I only take it at night 5mg.

It makes me sleepy so try not to take it more than once. My legs are really

acting up. If you can't get me by computer call me at .

Jane Anne King

Re: Re:

> Would Jane King please e-mail us at: JunePGray@... ref Vicodan (my

> husband takes it for pain). Please write us or call us at:

Thanks,

> June in Tallahassee I have lost your e-mail.

>

>

>

[Guest guest]

Jane, I am so sorry to be soooooo late in responding, but it seems my life is

always 1 yr. behind lately. Charlie takes Vicodan (5 mg) and 1 10 mg of

valium when he has a lot of pain and spasms. His prescription says 1 tablet 3

to

4 times a day for severe spasms and he takes it when he is in so much pain or

his legs are jumping or jerking and he also takes mirapex too. We look

forward to meeting ya'll one day soon. Call us sometimes. June

and

Charlie Gray in Tallahassee, FL

[Guest guest]

I sent a card and letter to more than a week ago. It has not been

returned, so hopefully, she has it or at least it is on its way to her (via

the post office or family member).

Dolores

> Hi everyone,I wrote a long letter yesterday. I will send it

> to her old address and hope it will be forwarded. I told her that

> everyone is wondering about her and about the cookbook. I also told

> her to call me collect. I hope I find out where she is located. I

> seem to think she may be in an adult foster home somewhere. I don't

> think she would still be in the in patient facility. I will hope for

> the best. Carolyn

>

>

>

>

>

>

[Guest guest]

Hi Donna,

I go today for my last reduction. Then, since I'm doing so well, my

physiatrist wants me to try two months off the stuff.

I've missing really down lately because of my nephew. So I'm trying

to work on fun stuff, like my quilt square. Keep my mind off things.

I don't know about you, but I'm definately going to dance again.

Thomson

[Guest guest]

I really hope you and everyone else in PLS-Friends dances again.

Keep us posted about the meds. and I hope you can go without them.

May God Bless You Richly,

Donna

> Hi Donna,

> I go today for my last reduction. Then, since I'm doing so well,

my

> physiatrist wants me to try two months off the stuff.

> I've missing really down lately because of my nephew. So I'm

trying

> to work on fun stuff, like my quilt square. Keep my mind off

things.

> I don't know about you, but I'm definately going to dance again.

> Thomson

[Guest guest]

In a message dated 6/10/2003 11:03:29 AM Eastern Standard Time,

jthomson@... writes:

> I don't know about you, but I'm definately going to dance again.

> Thomson

>

, You lucky you have a physiatrist. I called my hospital for a

referral, and they gave me three names. I called all three and asked for some

type of " treatment. " They all said we don't do that. All they want to do is

EMG's. I've had enough of them. I hope you and all of us get to dance

together.

Connie

[Guest guest]

Connie, How many emg's have you had?

Re: Re:

In a message dated 6/10/2003 11:03:29 AM Eastern Standard Time,

jthomson@... writes:

> I don't know about you, but I'm definately going to dance again.

> Thomson

>

, You lucky you have a physiatrist. I called my hospital for a

referral, and they gave me three names. I called all three and asked for

some

type of " treatment. " They all said we don't do that. All they want to do

is

EMG's. I've had enough of them. I hope you and all of us get to dance

together.

Connie

[Guest guest]

In a message dated 6/10/2003 7:21:53 PM Eastern Standard Time,

mrsbill@... writes:

> Yesterday I got my first

> AFO.

Sorry..., but what is an AFO. Some of us are kinda DUH!. Especially me.

Connie

[Guest guest]

Bonnie,

Have you looked into a differant doorknob? got stuck in the garage

this winter I also was unable to hear him had I not decided to check on him

who knows what may have happened. I soon went out and purchused a lever

doorknob. All he has to do is push down on the lever with his hand and it well

open

for him. I was able to put it in myself. Hope this helps. Thanks Shirley

[Guest guest]

Boy have I missed the chatter I need a fix too!!........Glad we're back on

line. Thanks Mark...............Flora Brand

[Guest guest]

Boy have I missed the chatter I need a fix too!!........Glad we're back on

line. Thanks Mark...............Flora Brand

[Guest guest]

and I probably have virtually nothing in common other than both

ending up here. However, I consider her a friend and such an upbeat

role model even though we're impacted by different diseases. She is

upbeat, determined, crazy (in a good way), and uses the word " lucky "

so often. While I'm not about to get on her Harley, I definitely hope

to meet her sometime. When I see one younger hit by misdiagnosis and

then a serious disease and through it all she doesn't complain but

just moves forward, living life to its fullest, I can't help but

finding myself energized and motivated.

> > > >

> > > > Hi All,

> > > >

> > > > My $.02 on this subject.

> > > >

> > > > The reason for biopsy is to help you and your medical " team "

> determine

> > > > the " most " appropriate course of treatment for your disease.

> > > >

> > > > There are over 200 different ILDs.. Some of are treatable

some

> are

> > > > not. Some are primary diagnoses, some are secondary or co-

morbid

> > > > diagnoses. If you are at the point of considering biopsy then

> it is

> > > > more likely that PF is a primary DX.

> > > >

> > > > If you are at this point it is my belief (and I'm not a

medical

> pro.)

> > > > that the only questions remaining are:

> > > >

> > > > 1. How experienced is the surgeon?

> > > > 2. Which procedure to use (VATS or OLB)?

> > > > 3. Am I physically able to withstand the rigors of the

> procedure?

> > > >

> > > > Each of us will choose for ourselves depending on our

> perception of

> > > > our needs.

> > > >

> > > > After biopsy (OLB) my DX is Usual Interstitial Pneumonitis in

> the

> > > > clinical context of Idiopathic Pulmonary Fibrosis. Secondary

to

> UIP is

> > > > Pulmonary Langerhans Cell Histiocytosis.

> > > >

> > > > Treatment? The PLCH is resolved (in remission) and the UIP

does

> not

> > > > respond to pharmaceutical intervention.

> > > >

> > > > OK OK So it is $.03.

> > > >

> > > > Peace.

> > > >

> > > > UIP/LCH 5.06 CA

> > > >

> > >

> >

>

[Guest guest]

You stated your opinion !!! Last I heard that was still allowed......you haven't offended me......life is too damn short !! jim IPF 05 alaskaPeggy wrote: Group you will need to read from the bottom post up. This is a puzzle to me. PLEASE let me know what to say.. Have I offended anyone here? Please let me know. I sure do not want to loose what little patients I have if I am wrong. Thanks. Peggy I am posting all this as I

see these posts do not post on the board. Peggy ... what's your opinion??? ... are you saying the group should mold itself to accommodate you??? Janine California From: Peggy <pac1773cfl (DOT) rr.com> Subject: Re:

FUNNY FUNNY FUNNY Date: Mon, 19 Nov 2007 16:48:51 -0500 To: Janine <breathe-supportattheplaza> WELL, I guess you have your opinion too. Love and Prayers, Peggy ipf 6/04 Florida "Worry looks around, Sorry looks back, Faith looks up." Peggy, the point is NOT everyone on this group is motivated to write ... and when they are they should be encouraged to write NO matter what the length to express themselves ... Just because long posts make you antsy is NO reason to deny others ... your lol hints to NOT write long posts is detrimental to the group as a whole ... do you see my point??? Janine California From: Peggy <pac1773cfl (DOT) rr.com> Subject: Re: FUNNY FUNNY FUNNY Date: Mon, 19 Nov 2007 13:54:10 -0500 To: Janine <breathe-supportattheplaza> Nope, I don't agree.. Funnys are entertaining. Long posts make me antsy. So I hardly get to the end. I am getting better. LOL You are welcome to delete the funnys if you want. Love and Prayers, Peggy ipf 6/04 Florida "Worry looks around,

Sorry looks back, Faith looks up." Hi Peggy, If you have time to read these long funnies you have time to read long posts ... don't you agree??? ... then again you can skip a long post and read it when you have time ... Have you noticed disappeared??? ... now we are NOT getting the benefit of her knowledge ... I was looking forward to her breathing exercises info ... Please pray for her return ... Janine California Love and Prayers,

Peggy ipf 6/04 Florida "Worry looks around, Sorry looks back, Faith looks up." Love and Prayers, Peggy ipf 6/04 Florida "Worry looks around, Sorry looks back, Faith looks up."

Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how.

[Guest guest]

, selfish ?? No way, you're my hero - a shining example of perseverance and determination. I can't believe what you have overcome and still maintain a positive attitude through it all.

I don't normally post - simply "lurk" in the background listening, learning and observing but your post really affected me. I can't believe the attitude of that "caregiver". She needs to look up the definition of care - and take it to heart. Oh, maybe that's the problem - no heart.

You continue to hang in there. Your life has meaning and you inspire many of us to not give up. Enjoy your holiday and continue to make the best of everyday.

Dunn, NJ

diffuse systemic scleroderma 1/07

pulmonary hypertension 7/07See what's new at AOL.com and Make AOL Your Homepage.