Welcome

[Guest guest]

Welcome from Iowa,

You sound like a text book case! I suffered with chronic pain

syndrome after a 2nd. back surgery failed to allieviate my pain

which steadily over the years [20+] got worse..While on the

tylenol#3 I learned to use it to help me through my children

childhood...sports, music, etc. but after they graduated and I

had 'dilent' at home times...there was nothing to take my mind off

the pain..tho I started on various projects to help fill in the

time...but after a fall from a ladder that put me in a wheel chair

for almost 3 months [fractured my heel 3/4ths of the way thru and

broke my arm] there was no goiong back to the tylenol #3....I

started seeing my Dr. monthly..then weekly..and the meds we

tried...all meant to help me deal with the pain but not 'for' the

pain.....Which is how most Dr.'s treat pain now a days..and will

continue until they are made aware of FIBRO..Too bad we don't have a

spokesperson lobbying for us or at least and ad or two on TV to make

them wake up and smell the roses...Fibro isn't cancer...it doesn't

show up on an X-ray...or blood work...You aren't hurting yourself by

using the limb that hurts...so.....trying to treat pain with no

diagnosis scares Dr.'s.......because they can't see,feel, or find a

cause they think it's " In our heads " ...My Dr. thank Heaven is

updated or suffers from it himself..had a back injury that needed

surgery...plus his wife became addicted to pain pills...But when he

sent me to the rheumatoid specialist and the diagnosis was

fibro....My world changed for the better....He decided to treat the

PAIN. My daughter has also been diagnosed with fibro..she takes pain

pills trmadal and trazadone to sleep at night...prior to bein

gdiagnosed she had a cupboard full of meds all to treat her reaction

to pain...a small fortune in pills. She's 23 and not able to work

but there's hope now for her. If possible and you think your

daughters have fibro get them diagnosed now. We both know the he--

we went thru don't let them wait and have to fight for help later.

Life's too short, don't let pain curtail their youth.

I sleep on a waterbed that has the mattress you can walk across

and not upset a glass of water..during the winter it's a great help

for joints and achy muscles.

Just Me K

[Guest guest]

Norah, Wasn't his name .....No, I'm serious..I'm sure

that was his stage name.I can see his face...don't you just hate

that? !! Just Me... K

In Fibromyalgia_Support_Group , " Norah Bleazard "

<norah.fibroyahoo@b...> wrote:

> ... we do have a spokesperson. I just can't remember his

name... He

> was the actor from the TV show CHiPs. He was the blonde

motorcycle cop.

> Darn I can't remember his name... but he is the official celebrity

> spokesperson from what I saw on a Fibro web site somewhere.. oh

no.. now I

> can't remember the web site either... what's my name again???

>

> hugs,

> what's her face :-)

> Welcome

>

>

> continue until they are made aware of FIBRO..Too bad we don't

have a

> spokesperson lobbying for us or at least and ad or two on TV to

make

> them wake up and smell the roses...Fibro isn't cancer...it

doesn't

>

>

>

[Guest guest]

Larry Wilcox

> > ... we do have a spokesperson. I just can't remember his

> name... He

> > was the actor from the TV show CHiPs. He was the blonde

> motorcycle cop.

> > Darn I can't remember his name... but he is the official celebrity

> > spokesperson from what I saw on a Fibro web site somewhere.. oh

> no.. now I

> > can't remember the web site either... what's my name again???

> >

> > hugs,

> > what's her face :-)

> > Welcome

> >

> >

> > continue until they are made aware of FIBRO..Too bad we don't

> have a

> > spokesperson lobbying for us or at least and ad or two on TV to

> make

> > them wake up and smell the roses...Fibro isn't cancer...it

> doesn't

> >

> >

> >

[Guest guest]

>

> Hi,

>

> We've had some new people join us and I just wanted to

> say " welcome " . This is a group for patients with pulmonary

fibrosis

> to share what's going on with them after the diagnosis of

idiopathic

> pulmonary fibrosis and pulmonary fibrosis. This is an open forum.

> Sometimes the thoughts and feelings aren't the most pleasant, but

> it's part of the process of dealing with this diagnosis. We're

here

> to seek answers to questions, be an " ear " to listen, a shoulder to

> cry on, whatever is needed at the time. We even crack jokes

> sometimes!! We hope you find it to be a support during this time

in

> your life.

>

> Also, if you could sign your name and diagnosis with date after

your

> posting so we can better understand where you are in this journey,

> it would be helpful.

>

> This is our support group. We welcome suggestions for improvement

> and constructive critisism. Thank you.

>

> Leanne ipf 1/03

> Moderator

>

Thank you for the welcome letter and for the group that you are a

part of. I have searched for a while for a group to talk to and get

support from. No matter how they try those that do not have this

dreaded disease can not understand how we feel. My husband and

children try to be supportive and they are, but my children have

their own families and I do not expect them to stop their lives just

because I am in the end stages of IPF and require more that they can

give. My husband has stopped going fishing and everything else

because he doesn't want me to be alone. No matter how I insist that I

do not want him to hover over me he insist on hovering,yet he still

will not talk to me about the disease and its progression. How do I

get him to talk to me about this. My children are the same way. It is

almost like they think if we don't talk about it it will just go

away. If you are anyone else have any ideas on how I can handle this

matter please let me know.

Barbara IPF 2003