Re: Many things to report

[Guest guest]

Happy Birthday Nan.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Many things to reportTo: Breathe-Support Date: Wednesday, October 7, 2009, 9:17 AM

Hi All,

I just this morning got a call from the O2 co. My insurance has finally allowed me to keep my liquid system. With the other health difficulties, the gas system was just too much for me to handle. I see my local pulmodude on the 16th. Then, on the 19th, I see Dr. LaCamera at Beth Israel-Deaconess Hosp. in Boston. He is the co-director of the ILD Center. Needless to say, I am very excited about that.

After having the MRI on my right knee, I'm happy to say that there's no signs of aspetic necrosis. The orthopedist thinks the pain I was having was related to the rheumatiod.

I saw my new rheumy and he's wonderful. Just his manner set me at ease the moment he walked in. My legs are finally healing and the crazy rash seems to be getting better.

Tomorrow, the 8th, I'll be a 1/2 century! WOW! Never thought I'd make it! LOL

Hope all are weel and breathing easy,

Nan 49, MA

List started '84

RB/ILD '04

PF '08

Asthma '09

[Guest guest]

Good news. If the doctor prescribes liquid specifically then they just

ultimately have to give in.

>

> Hi All,

> I just this morning got a call from the O2 co. My insurance has

finally allowed me to keep my liquid system. With the other health

difficulties, the gas system was just too much for me to handle. I see

my local pulmodude on the 16th. Then, on the 19th, I see Dr. LaCamera at

Beth Israel-Deaconess Hosp. in Boston. He is the co-director of the ILD

Center. Needless to say, I am very excited about that.

> After having the MRI on my right knee, I'm happy to say that there's

no signs of aspetic necrosis. The orthopedist thinks the pain I was

having was related to the rheumatiod.

> I saw my new rheumy and he's wonderful. Just his manner set me at ease

the moment he walked in. My legs are finally healing and the crazy rash

seems to be getting better.

> Tomorrow, the 8th, I'll be a 1/2 century! WOW! Never thought I'd make

it! LOL

> Hope all are weel and breathing easy,

> Nan 49, MA

> List started '84

> RB/ILD '04

> PF '08

> Asthma '09

>

[Guest guest]

Happy Birthday (a few hours early so

I don’t forget)

Ken Baker UIP/IPF 12/05 NH

From:

Breathe-Support [mailto:Breathe-Support ] On Behalf Of H

Sent: Wednesday, October 07, 2009

12:17 PM

To:

Breathe-Support

Subject: Many

things to report

Hi All,

I just this morning got a call from the O2 co. My insurance has finally allowed

me to keep my liquid system. With the other health difficulties, the gas system

was just too much for me to handle. I see my local pulmodude on the 16th. Then,

on the 19th, I see Dr. LaCamera at Beth Israel-Deaconess Hosp. in Boston. He is the

co-director of the ILD

Center. Needless to say,

I am very excited about that.

After having the MRI on my right knee, I'm happy to say that there's no signs

of aspetic necrosis. The orthopedist thinks the pain I was having was related

to the rheumatiod.

I saw my new rheumy and he's wonderful. Just his manner set me at ease the

moment he walked in. My legs are finally healing and the crazy rash seems to be

getting better.

Tomorrow, the 8th, I'll be a 1/2 century! WOW! Never thought I'd make it! LOL

Hope all are weel and breathing easy,

Nan 49, MA

List started '84

RB/ILD '04

PF '08

Asthma '09

[Guest guest]

Happy Birthday Nan, Hope the cake and ice cream are yummy!!!!!!!!!!!!!PJ in OH, 54, IPF'09, Sjogren's'95 Many things to report

Hi All,I just this morning got a call from the O2 co. My insurance has finally allowed me to keep my liquid system. With the other health difficulties, the gas system was just too much for me to handle. I see my local pulmodude on the 16th. Then, on the 19th, I see Dr. LaCamera at Beth Israel-Deaconess Hosp. in Boston. He is the co-director of the ILD Center. Needless to say, I am very excited about that. After having the MRI on my right knee, I'm happy to say that there's no signs of aspetic necrosis. The orthopedist thinks the pain I was having was related to the rheumatiod.I saw my new rheumy and he's wonderful. Just his manner set me at ease the moment he walked in. My legs are finally healing and the crazy rash seems to be getting better. Tomorrow, the 8th, I'll be a 1/2 century! WOW! Never thought I'd make it! LOLHope all are weel and breathing easy,Nan 49, MAList started '84RB/ILD '04PF '08Asthma '09

[Guest guest]

Hi all,

Thanks for the birthday wishes. And happy birthday to Nan. The first half of

Oct. has lots of birthdays. A friend who shares my Oct. 5 b-day told me years

ago that date is the exact number of days as the human gestation period dating

from New Year's Eve! LOL.

, I'm glad you're feeling better now. I honestly didn't know things like

that could happen. Don't ask me how I got so dumb. Think it might be denial.

I've already told you all I love this board and that I'm learning so much, but I

have to be honest & tell you that I'm sorta terrified now as opposed to being

fairly resigned before. I had visions of eventually needing oxygen & a walker or

scooter & finally quietly going to sleep & not waking up. NOT chest tubes and

muscular pain; detached retina from coughing; or thin skin that bleeds as one

side effect of prednisone; etc., etc.

Have I been delusional? I read about a recent study that said people who were

recently diagnosed with PF were shocked on seeing the conditions of people

diagnosed 3-4 years earlier. One of my best friends is in the last stage of

emphysema & still keeps active in his late 70s, albeit in a wheelchair with

24-hr oxygen. Is he unusual or is that disease not as horrendous as ours?

Please don't anyone stop sharing your pain on this board to save my " delicate

sensibilities. " I'd much rather be knowledgeable & prepared than ignorant &

surprised. And you can bet when those things start happening to me, I'm sure

going to share them. We're all here to support each other & I take that

seriously.

OK, let me deliberately change the topic and answer 's question.

, the name Cees is just a nickname. It's really Celia, but nobody ever says

it right so during my freshman year in high school, several classmates started

calling me Cees. ( & that was short for the nickname Cecil, as in the Seasick Sea

Serpent. Anybody remember that one?) I'm the one who decided on the spelling

because it made the most sense to me. I've met some other Celias since then who

go by Cece or Cec, but those spellings always reminded me of the cartoon.

Having explained all that, the answer to your question is yes, I actually do

have some Dutch in me. And Irish and English and Spanish and French and . . . .

My mom always said we were " Heinz 57 varieties. " I just call myself a mutt

(which everybody knows is the best kind of dog, right?)

And speaking of dogs, since I know there are lots of dog lovers out there, that

powerful story by HubGarageBruce about how your dogs watch over you while you

sleep brought me to tears. If we do get around to writing a book, I sure hope

you'll give permission to use that beautiful story. ( & never, EVER worry about

grammar & spelling. That's what we editors are here for.)

Thanks to all of you for being there.

Cees, S Calif

dx PF 10/08

>

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> Subject: Re: Many things to report

> To: Breathe-Support

> Date: Wednesday, October 7, 2009, 5:07 PM

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> Nan, I'm THRILLED to hear that you have no aseptic necrosis!!! I could not be

any happier. That's such good news.

> It sounds like things are looking up a bit and I'm happy for you!

> Hope you have a wonderful birthday tomorrow!!

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

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> From: H <truromntc (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Wed, October 7, 2009 12:17:27 PM

> Subject: Many things to report

>

>  

>

> Hi All,

> I just this morning got a call from the O2 co. My insurance has finally

allowed me to keep my liquid system. With the other health difficulties, the gas

system was just too much for me to handle. I see my local pulmodude on the 16th.

Then, on the 19th, I see Dr. LaCamera at Beth Israel-Deaconess Hosp. in Boston.

He is the co-director of the ILD Center. Needless to say, I am very excited

about that.

> After having the MRI on my right knee, I'm happy to say that there's no signs

of aspetic necrosis. The orthopedist thinks the pain I was having was related to

the rheumatiod.

> I saw my new rheumy and he's wonderful. Just his manner set me at ease the

moment he walked in. My legs are finally healing and the crazy rash seems to be

getting better.

> Tomorrow, the 8th, I'll be a 1/2 century! WOW! Never thought I'd make it! LOL

> Hope all are weel and breathing easy,

> Nan 49, MA

> List started '84

> RB/ILD '04

> PF '08

> Asthma '09

>

[Guest guest]

Cees..just as well I asked about your Name...I now know you're a GAL..Cees is a male name in Holland! promounced with a Hard 'C'..as in CASE!

I presume your's is a soft 'C' as in Sess/Sass or summat! It's a tricky thing picking up pronunciation from text sometimes!

Yes the reports from this Board do get scary at times. It's important to remember there are many different ways of experienceing this journey. So much is affected by co-exisitng health problems...underlying causes of the PF etc etc.

I regard myself as being in the 'Honeymoon' Phase still.. I have started using O2 but in fits n' starts & probably not as often as I would be wise to. As a 'sometime user' it's easy to tell oneself that it's too much hassle to go get it, fiddle around putting on the nose hose..just to make the bed or do the vaccuming or hang out the washing....of course it IS worth it & I really must get it together just so I can keep the Honeymoon lasting even longer!

If I'm in a rush to get out the door I find myself bargaining with my 'lazy' self over whether to take extra time to go get the POC to have it with me when I'm pushing to supermarket trolley back to Vonnie Van....once I'm driving & working hard getting the Van around the Roundabouts I know I SHOULD've made the effort!

I'm thinking of putting a Sign on my Back Door to jog my sensible self to make the Right decision!

One day of adjustment at a Time I reckon!

Cheers,

in Oz (GIO)

> > > > > > From: Beth mbmurtha@> > Subject: Re: Many things to report> > To: Breathe-Support > > Date: Wednesday, October 7, 2009, 5:07 PM> > > > > > > > > > > > > > > > > > > > Nan, I'm THRILLED to hear that you have no aseptic necrosis!!! I could not be any happier. That's such good news.> > It sounds like things are looking up a bit and I'm happy for you!> > Hope you have a wonderful birthday tomorrow!!> > > > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > > > > > > > > > > > > From: H truromntc (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Wed, October 7, 2009 12:17:27 PM> > Subject: Many things to report> > > > > > > > Hi All,> > I just this morning got a call from the O2 co. My insurance has finally allowed me to keep my liquid system. With the other health difficulties, the gas system was just too much for me to handle. I see my local pulmodude on the 16th. Then, on the 19th, I see Dr. LaCamera at Beth Israel-Deaconess Hosp. in Boston. He is the co-director of the ILD Center. Needless to say, I am very excited about that. > > After having the MRI on my right knee, I'm happy to say that there's no signs of aspetic necrosis. The orthopedist thinks the pain I was having was related to the rheumatiod.> > I saw my new rheumy and he's wonderful. Just his manner set me at ease the moment he walked in. My legs are finally healing and the crazy rash seems to be getting better. > > Tomorrow, the 8th, I'll be a 1/2 century! WOW! Never thought I'd make it! LOL> > Hope all are weel and breathing easy,> > Nan 49, MA> > List started '84> > RB/ILD '04> > PF '08> > Asthma '09> >>