Re: Popping in again to say hello!

[Guest guest]

HI , so you were here in Orlando during our record breaking heat

wave...lol!. I am sure glad it is almost over. Please tell me what the disabled

oass is and how you go about getting it. I like to go to the parks, but it is a

real hassle with the oxygen and getting it to last long enough for some rides

and everything. I reallly appreciate it. thanks.

Kathy...fl

PF....4/07

Wtg for the TX call

>

>

> Hello gang,

>

> I've been AWOL again! Not intentionally though. It's just been busy.

>

> I went to Orlando to give a lecture about Hermansky-Pudlak Syndrome at

> an albinism conference. Of course, a few friends and I worked in a trip

> to the theme parks - hey, you can't be in Mickey's town and not visit

> the home the mouse - it would just be not the thing to do!

>

> We had so much fun. We had a whole gang of HPS'ers. I think it was even

> more fun than going with my own family because I didn't have to worry

> about not being able to keep up, or getting sick or whatever. We all had

> the same issues and everyone was happy to go with the flow and take

> things as they came. No pressure!

>

> We all got disabled passes - we're all legally blind and half of us have

> PF or bowel issues that make endurance an issue - so we got to go almost

> to the front of the lines. It was soooo nice.

>

> My friend and I were the old ladies - is 44 and I'm 36 -

> everyone else was in their early 20s. One of our HPS friends couldn't

> join us at Disney, but we took her to Universal. She's only 22 and very

> badly needs a lung transplant, but doesn't have insurance that will

> cover it. It's just not right.

>

> I'm not pretty much working full time for the HP'S Network and just

> operating on faith that somehow the money will come along to pay me. I'm

> also doing some freelance work again, which feels good and helps offset

> what the HPS Network can't afford to pay.

>

> My state's vocational rehabilitation program helped me get an office

> together including a new desk and new computer equipment, plus some

> adaptive tech stuff. I'm so thrilled!

>

> I'm off this week to man a booth at the American Academy of Pediatrics.

> We're trying to get them to screen kids with albinism for HPS.

>

> Even when I don't have time to post, I check up on you all. I love it

> that so many are on facebook so I can get a one-liner all the time on

> how everyone's doing.

>

>

>

> Stay well!

>

>

>

>

>

>

>

> Hermansky-Pudlak syndrome albinism 02 / PF 06

>

>

>

> www.heatherkirkwood.blogspot.com

> <http://www.heatherkirkwood.blogspot.com/>

>

[Guest guest]

,Glad your out there enjoying life! PJ in OH, 54, IPF '09, Sjogrens'95 Popping in again to say hello!

Hello gang,

I've been AWOL again! Not intentionally though. It's just been busy.

I went to Orlando to give a lecture about Hermansky-Pudlak Syndrome at an albinism conference. Of course, a few friends and I worked in a trip to the theme parks - hey, you can't be in Mickey's town and not visit the home the mouse - it would just be not the thing to do!

We had so much fun. We had a whole gang of HPS'ers. I think it was even more fun than going with my own family because I didn't have to worry about not being able to keep up, or getting sick or whatever. We all had the same issues and everyone was happy to go with the flow and take things as they came. No pressure!

We all got disabled passes - we're all legally blind and half of us have PF or bowel issues that make endurance an issue - so we got to go almost to the front of the lines. It was soooo nice.

My friend and I were the old ladies - is 44 and I'm 36 - everyone else was in their early 20s. One of our HPS friends couldn't join us at Disney, but we took her to Universal. She's only 22 and very badly needs a lung transplant, but doesn't have insurance that will cover it. It's just not right.

I'm not pretty much working full time for the HP'S Network and just operating on faith that somehow the money will come along to pay me. I'm also doing some freelance work again, which feels good and helps offset what the HPS Network can't afford to pay.

My state's vocational rehabilitation program helped me get an office together including a new desk and new computer equipment, plus some adaptive tech stuff. I'm so thrilled!

I'm off this week to man a booth at the American Academy of Pediatrics. We're trying to get them to screen kids with albinism for HPS.

Even when I don't have time to post, I check up on you all. I love it that so many are on facebook so I can get a one-liner all the time on how everyone's doing.

Stay well!

Hermansky-Pudlak syndrome albinism 02 / PF 06

www.heatherkirkwood.blogspot.com

[Guest guest]

,

Thanks for ducking your head back in to say hi. I've been following your adventures on Facebook and on your blog. You are certainly one busy lady and an inspiration to me and I'm sure many others.

It's exciting to hear about your new office. It's great to get help and support to remain productive in the world huh?

Keep putting one foot in front of the other!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, October 14, 2009 6:54:48 PMSubject: Popping in again to say hello!

Hello gang,

I've been AWOL again! Not intentionally though. It's just been busy.

I went to Orlando to give a lecture about Hermansky-Pudlak Syndrome at an albinism conference. Of course, a few friends and I worked in a trip to the theme parks - hey, you can't be in Mickey's town and not visit the home the mouse - it would just be not the thing to do!

We had so much fun. We had a whole gang of HPS'ers. I think it was even more fun than going with my own family because I didn't have to worry about not being able to keep up, or getting sick or whatever. We all had the same issues and everyone was happy to go with the flow and take things as they came. No pressure!

We all got disabled passes - we're all legally blind and half of us have PF or bowel issues that make endurance an issue - so we got to go almost to the front of the lines. It was soooo nice.

My friend and I were the old ladies - is 44 and I'm 36 - everyone else was in their early 20s. One of our HPS friends couldn't join us at Disney, but we took her to Universal. She's only 22 and very badly needs a lung transplant, but doesn't have insurance that will cover it. It's just not right.

I'm not pretty much working full time for the HP'S Network and just operating on faith that somehow the money will come along to pay me. I'm also doing some freelance work again, which feels good and helps offset what the HPS Network can't afford to pay.

My state's vocational rehabilitation program helped me get an office together including a new desk and new computer equipment, plus some adaptive tech stuff. I'm so thrilled!

I'm off this week to man a booth at the American Academy of Pediatrics. We're trying to get them to screen kids with albinism for HPS.

Even when I don't have time to post, I check up on you all. I love it that so many are on facebook so I can get a one-liner all the time on how everyone's doing.

Stay well!

Hermansky-Pudlak syndrome albinism 02 / PF 06

www.heatherkirkwood .blogspot. com

[Guest guest]

Thanks Peggy, I have wanted to go back for a long time, but have been too

afraid.....I will try this...know you have been struggliong lately.......hope

today is easier for you.;

Do you go to the group meetings at Shand's?I hear they have moved to 3:30 to

4:40 on Wednesday afternoons. I go back on November 4th for mny 3 month checkup

(if no call for TX) and if so, we are going to stay for it.

Take care,

Kathy.....Fl

Wtg for TX call

PF....4/07

> >

> >

> > Hello gang,

> >

> > I've been AWOL again! Not intentionally though. It's just been busy.

> >

> > I went to Orlando to give a lecture about Hermansky-Pudlak

> Syndrome at

> > an albinism conference. Of course, a few friends and I worked in a

> trip

> > to the theme parks - hey, you can't be in Mickey's town and not visit

> > the home the mouse - it would just be not the thing to do!

> >

> > We had so much fun. We had a whole gang of HPS'ers. I think it was

> even

> > more fun than going with my own family because I didn't have to worry

> > about not being able to keep up, or getting sick or whatever. We

> all had

> > the same issues and everyone was happy to go with the flow and take

> > things as they came. No pressure!

> >

> > We all got disabled passes - we're all legally blind and half of

> us have

> > PF or bowel issues that make endurance an issue - so we got to go

> almost

> > to the front of the lines. It was soooo nice.

> >

> > My friend and I were the old ladies - is 44 and I'm 36 -

> > everyone else was in their early 20s. One of our HPS friends couldn't

> > join us at Disney, but we took her to Universal. She's only 22 and

> very

> > badly needs a lung transplant, but doesn't have insurance that will

> > cover it. It's just not right.

> >

> > I'm not pretty much working full time for the HP'S Network and just

> > operating on faith that somehow the money will come along to pay

> me. I'm

> > also doing some freelance work again, which feels good and helps

> offset

> > what the HPS Network can't afford to pay.

> >

> > My state's vocational rehabilitation program helped me get an office

> > together including a new desk and new computer equipment, plus some

> > adaptive tech stuff. I'm so thrilled!

> >

> > I'm off this week to man a booth at the American Academy of

> Pediatrics.

> > We're trying to get them to screen kids with albinism for HPS.

> >

> > Even when I don't have time to post, I check up on you all. I love it

> > that so many are on facebook so I can get a one-liner all the time on

> > how everyone's doing.

> >

> >

> >

> > Stay well!

> >

> >

> >

> >

> >

> >

> >

> > Hermansky-Pudlak syndrome albinism 02 / PF 06

> >

> >

> >

> > www.heatherkirkwood.blogspot.com

> > <http://www.heatherkirkwood.blogspot.com/>

> >

>

[Guest guest]

Kathy, My Dr told me about a new DR. from Wi, I think starting an IPF clinic with all the support and goodies we could ever need but I haven't been in touchmuch about pleasant stuff. Tell me a little about it. Where is it held ? What Dr.? What do ya do? LOL Love & Prayers, Peggy Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Thanks Peggy, I have wanted to go back for a long time, but have been too afraid.....I will try this...know you have been struggliong lately.......hope today is easier for you.; Do you go to the group meetings at Shand's?I hear they have moved to 3:30 to 4:40 on Wednesday afternoons. I go back on November 4th for mny 3 month checkup (if no call for TX) and if so, we are going to stay for it. Take care, Kathy.....Fl Wtg for TX call PF....4/07 > > > > > > Hello gang, > > > > I've been AWOL again! Not intentionally though. It's just been busy. > > > > I went to Orlando to give a lecture about Hermansky-Pudlak > Syndrome at > > an albinism conference. Of course, a few friends and I worked in a > trip > > to the theme parks - hey, you can't be in Mickey's town and not visit > > the home the mouse - it would just be not the thing to do! > > > > We had so much fun. We had a whole gang of HPS'ers. I think it was > even > > more fun than going with my own family because I didn't have to worry > > about not being able to keep up, or getting sick or whatever. We > all had > > the same issues and everyone was happy to go with the flow and take > > things as they came. No pressure! > > > > We all got disabled passes - we're all legally blind and half of > us have > > PF or bowel issues that make endurance an issue - so we got to go > almost > > to the front of the lines. It was soooo nice. > > > > My friend and I were the old ladies - is 44 and I'm 36 - > > everyone else was in their early 20s. One of our HPS friends couldn't > > join us at Disney, but we took her to Universal. She's only 22 and > very > > badly needs a lung transplant, but doesn't have insurance that will > > cover it. It's just not right. > > > > I'm not pretty much working full time for the HP'S Network and just > > operating on faith that somehow the money will come along to pay > me. I'm > > also doing some freelance work again, which feels good and helps > offset > > what the HPS Network can't afford to pay. > > > > My state's vocational rehabilitation program helped me get an office > > together including a new desk and new computer equipment, plus some > > adaptive tech stuff. I'm so thrilled! > > > > I'm off this week to man a booth at the American Academy of > Pediatrics. > > We're trying to get them to screen kids with albinism for HPS. > > > > Even when I don't have time to post, I check up on you all. I love it > > that so many are on facebook so I can get a one-liner all the time on > > how everyone's doing. > > > > > > > > Stay well! > > > > > > > > > > > > > > > > Hermansky-Pudlak syndrome albinism 02 / PF 06 > > > > > > > > www.heatherkirkwood.blogspot.com > > <http://www.heatherkirkwood.blogspot.com/> > > >