wow

[Guest guest]

Thank you all who responded to my venting, and Oh my Vicki's post gave

me chills and warmed my heart. I am so glad she shared the prayer. I

find myself not wanting to talk about pf with family or friends. I want

them to remember me with smiles and I like to ignore the fact I have

this monster. Since my Dad died of this in 1991 I know what I am up

against. Today I feel stronger and am prepared to fight a good

fight.Hope the rest of you are getting your strength back to. God is in

control and I just need to remind myself that I am a survivor. I have

got to get a grip because come August I am going to be a Grandma and

plan on being in Houston for the event. I never thought I'd live to see

a Grandchild and this little guy was a total surprise.My daughter had

switched pills and the rest is history.

love to ya'll

Kathy53/10-04/In.

[Guest guest]

Hi Kathy,

Have a welcome from across the pond xx

I wanted to comment about talking about PF to your friends and family. I felt the same about not wanting them to remember the monster, but I have found that the more information they have the easier it is for them. When I have more news or information that I feel they need to know, I give them the info quickly, and precisely, they will ask their questions, which I answer to the best of my ability, then we talk about other things. I feel that it is important for them to know, however hard it might be to tell them, and now I find that I have to talk about it less and less as they have plenty of info already and I can relax with them and be all smiles.

Love Ze (38) Dermatomyosits, PF (NSIP?) plus others for ages, PH 2008.>> Thank you all who responded to my venting, and Oh my Vicki's post gave > me chills and warmed my heart. I am so glad she shared the prayer. I > find myself not wanting to talk about pf with family or friends. I want > them to remember me with smiles and I like to ignore the fact I have > this monster. Since my Dad died of this in 1991 I know what I am up > against. Today I feel stronger and am prepared to fight a good > fight.Hope the rest of you are getting your strength back to. God is in > control and I just need to remind myself that I am a survivor. I have > got to get a grip because come August I am going to be a Grandma and > plan on being in Houston for the event. I never thought I'd live to see > a Grandchild and this little guy was a total surprise.My daughter had > switched pills and the rest is history.> love to ya'll> Kathy53/10-04/In.>

[Guest guest]

> >

> > Thank you all who responded to my venting, and Oh my Vicki's post

gave

> > me chills and warmed my heart. I am so glad she shared the

prayer. I

> > find myself not wanting to talk about pf with family or friends. I

> want

> > them to remember me with smiles and I like to ignore the fact I

have

> > this monster. Since my Dad died of this in 1991 I know what I am

up

> > against. Today I feel stronger and am prepared to fight a good

> > fight.Hope the rest of you are getting your strength back to. God

is

> in

> > control and I just need to remind myself that I am a survivor. I

have

> > got to get a grip because come August I am going to be a Grandma

and

> > plan on being in Houston for the event. I never thought I'd live

to

> see

> > a Grandchild and this little guy was a total surprise.My daughter

had

> > switched pills and the rest is history.

> > love to ya'll

> > Kathy53/10-04/In.

> >

>