mixed medley for Kathy,Lou& Peg and Bruce

[Guest guest]

Hi guys! Hope all of you had a good Thanksgiving without too much " overstuffing "

like we all tend to do! We were at my brothers and they decided to surprise me

with a DVD of our childhood memories that they have been meaning to do for

years. It was cool to see the " movies " my parents shot for all of us when we

were kids! Wow how far we have come in technology! I had a good TG day for the

most part but overdid the timing. I started with the chills and my muscles got

rigid and I could hardly move. Then my heart was racing and didn't calm down for

a about 2-3 hours until I got home and took some meds. It all stemmed from

taking the Cytoxan the docs wanted me back on -I had taken M/T and Wed. By Wed I

almost was bedridden. It may help my lungs but for some reason attacks my

muscles the wrong way. That was the only thing left docs had to offer me-been on

everything else. Trying a little Decadron for short term now. It was a scary

end of the day for me-thought I was going to end up in the ER. I don't know how

to manage this disease to live on from here. Docs don't have any answers. They

all say since PH is secondary have to treat primary lungs-now I can't take

cytoxan so they still aren't treating PH-any suggestions??????

Question: WHo was it that wrote me in the beginning that they had PF and

Polymyositis? Wasn't sure if it was Bruce or not............Have PM questions

and I wanted to ask someone that had it as well........

Lou- Good luck and my prayers are with you when you have your eye surgery!

Peg- I hope you took everyones advice and are feeling better as we are writing!

Kathy-I'm with Sher on the " run 'idea......... I'd by a tee too! Good idea

though!

Right now in NY it's too cold for a " run " and not enough supporters... I even

tried to set up a silent auction for our local library using my business with

the chocolate fountain, and no one hardly wanted to participate!

Well hope all of you enjoy the week. Hope to be up and decorating for Christmas

when the hubby goes to work on Monday- then I can put on the Christmas music to

keep me in the mood! Thanks for all your help with the questions......

Diane NY PF,PM, Raynauds, Sjorgrens 2006/ PH 2008

[Guest guest]



Hi Diane ... just wishing you good days...

Happy decorating. So far I have put out one thing...that may even be it! lol.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

mixed medley for Kathy,Lou & Peg and Bruce

Hi guys! Hope all of you had a good Thanksgiving without too much "overstuffing" like we all tend to do! We were at my brothers and they decided to surprise me with a DVD of our childhood memories that they have been meaning to do for years. It was cool to see the "movies" my parents shot for all of us when we were kids! Wow how far we have come in technology! I had a good TG day for the most part but overdid the timing. I started with the chills and my muscles got rigid and I could hardly move. Then my heart was racing and didn't calm down for a about 2-3 hours until I got home and took some meds. It all stemmed from taking the Cytoxan the docs wanted me back on -I had taken M/T and Wed. By Wed I almost was bedridden. It may help my lungs but for some reason attacks my muscles the wrong way. That was the only thing left docs had to offer me-been on everything else. Trying a little Decadron for short term now. It was a scary end of the day for me-thought I was going to end up in the ER. I don't know how to manage this disease to live on from here. Docs don't have any answers. They all say since PH is secondary have to treat primary lungs-now I can't take cytoxan so they still aren't treating PH-any suggestions??????Question: WHo was it that wrote me in the beginning that they had PF and Polymyositis? Wasn't sure if it was Bruce or not............Have PM questions and I wanted to ask someone that had it as well........Lou- Good luck and my prayers are with you when you have your eye surgery!Peg- I hope you took everyones advice and are feeling better as we are writing!Kathy-I'm with Sher on the "run 'idea......... I'd by a tee too! Good idea though!Right now in NY it's too cold for a "run" and not enough supporters... I even tried to set up a silent auction for our local library using my business with the chocolate fountain, and no one hardly wanted to participate! Well hope all of you enjoy the week. Hope to be up and decorating for Christmas when the hubby goes to work on Monday- then I can put on the Christmas music to keep me in the mood! Thanks for all your help with the questions......Diane NY PF,PM, Raynauds, Sjorgrens 2006/ PH 2008

[Guest guest]

has Polymyositis. I don't as of today's opinion, subject

to change tomorrow.

>

> Hi guys! Hope all of you had a good Thanksgiving without too much

" overstuffing " like we all tend to do! We were at my brothers and they

decided to surprise me with a DVD of our childhood memories that they

have been meaning to do for years. It was cool to see the " movies " my

parents shot for all of us when we were kids! Wow how far we have come

in technology! I had a good TG day for the most part but overdid the

timing. I started with the chills and my muscles got rigid and I could

hardly move. Then my heart was racing and didn't calm down for a about

2-3 hours until I got home and took some meds. It all stemmed from

taking the Cytoxan the docs wanted me back on -I had taken M/T and Wed.

By Wed I almost was bedridden. It may help my lungs but for some reason

attacks my muscles the wrong way. That was the only thing left docs had

to offer me-been on everything else. Trying a little Decadron for short

term now. It was a scary end of the day for me-thought I was going to

end up in the ER. I don't know how to manage this disease to live on

from here. Docs don't have any answers. They all say since PH is

secondary have to treat primary lungs-now I can't take cytoxan so they

still aren't treating PH-any suggestions??????

>

> Question: WHo was it that wrote me in the beginning that they had PF

and Polymyositis? Wasn't sure if it was Bruce or not............Have PM

questions and I wanted to ask someone that had it as well........

>

> Lou- Good luck and my prayers are with you when you have your eye

surgery!

>

> Peg- I hope you took everyones advice and are feeling better as we are

writing!

>

> Kathy-I'm with Sher on the " run 'idea......... I'd by a tee too! Good

idea though!

> Right now in NY it's too cold for a " run " and not enough supporters...

I even tried to set up a silent auction for our local library using my

business with the chocolate fountain, and no one hardly wanted to

participate!

>

> Well hope all of you enjoy the week. Hope to be up and decorating for

Christmas when the hubby goes to work on Monday- then I can put on the

Christmas music to keep me in the mood! Thanks for all your help with

the questions......

> Diane NY PF,PM, Raynauds, Sjorgrens 2006/ PH 2008

>