Re: Popping in again to say hello!!!!

[Guest guest]

it is always good and makes me smile to see your posts.. WOW you have been one BUSY lady. I have been peeking at your facebook. I just can't figure out all the ins and outs of that site guess I'm to old for that stuff.. lol kidding.Anyhow sounds like you had a good time. REST..... Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Just wanted to pop in to say hello - I feel so badly that I haven't posted anything in months, although I have been keeping track of some of you on Facebook. It's been a very busy, but very exciting, few months. My SSDI got approved - yahoo! Never thought I'd be so thrilled to make so little money. I'm still fighting with the long term disability insurance carrier on that part - groan. Who would have ever guessed that I'd get SSDI before the insurance I paid for to cover the gap between having to quit working and getting SSDI. I also never thought I'd be so happy to be legally blind either - it made getting the SSDI easier - only took me seven months. Geesh! I was at NIH in May for my visit in the Pirfenidone drug trial - everything was okay - my numbers had been down in January and they were the same in May. The good news is they aren't bad. But, after I went into the study my FVC went up 25 points and now it's back to where it was when I went in the study. I can't complain - really - I can't. After a week at "club Med" I went to Chicago. We did a huge community outreach for Hermansky-Pudlak Syndrome. We spoke at several hospitals and clinics and even churches etc. Then we went to San Diego for the American Thoracic Society meeting. I was crushed because I wanted to hear the actual presentation on Pirfenidone, but I was a patient speaker for pulmonary fibrosis at a basic science session that was at the same time. One of my friends went, and they were somewhat disappointed with what they heard. Then we were back in Chicago for Digestive Disease Week. WoW! That meeting is so huge! It makes ATS look like a family picnic - and I thought ATS was huge! Then we were in Washington for the public meeting of the National Heart Lung and Blood Institute. It was my first time, and it was a very interesting meeting. I was very pleased that they're spending some of their economic stimulus money on PF research. Yippee! I stayed an extra week with my brother, then came home. I'm so sorry I don't post more - by the time I've updated the HPS Web site, blog, and managed the two HPS listservs (and the one I have for Chediak-Higashi Syndrome, another albinism-related syndrome) - I'm just out of steam. Now that I'm sort of caught up, I"ll try to do better! Kirkwood Director of Outreach, Vice President Hermansky-Pudlak Syndrome Network One South Road Oyster Bay, NY 11771 1 (800) 789-9HPS www.hermansky-pudlak.org Personal blog: www.heatherkirkwood.blogspot.com Search the Web at www.goodsearch.com and choose the HPS Network as your charity!

[Guest guest]

,

I'm so glad to have you pop back in! Been watching your travels via Facebook and sometimes it makes me want to take a nap....don't know how you do it. I get tired just reading about all that you accomplish.

Check in when you can, always happy to see you post!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, July 2, 2009 10:50:59 PMSubject: Popping in again to say hello!!!!

Just wanted to pop in to say hello - I feel so badly that I haven't posted anything in months, although I have been keeping track of some of you on Facebook.

It's been a very busy, but very exciting, few months. My SSDI got approved - yahoo! Never thought I'd be so thrilled to make so little money. I'm still fighting with the long term disability insurance carrier on that part - groan. Who would have ever guessed that I'd get SSDI before the insurance I paid for to cover the gap between having to quit working and getting SSDI.

I also never thought I'd be so happy to be legally blind either - it made getting the SSDI easier - only took me seven months. Geesh!

I was at NIH in May for my visit in the Pirfenidone drug trial - everything was okay - my numbers had been down in January and they were the same in May. The good news is they aren't bad. But, after I went into the study my FVC went up 25 points and now it's back to where it was when I went in the study. I can't complain - really - I can't.

After a week at "club Med" I went to Chicago. We did a huge community outreach for Hermansky-Pudlak Syndrome. We spoke at several hospitals and clinics and even churches etc.

Then we went to San Diego for the American Thoracic Society meeting. I was crushed because I wanted to hear the actual presentation on Pirfenidone, but I was a patient speaker for pulmonary fibrosis at a basic science session that was at the same time. One of my friends went, and they were somewhat disappointed with what they heard.

Then we were back in Chicago for Digestive Disease Week. WoW! That meeting is so huge! It makes ATS look like a family picnic - and I thought ATS was huge!

Then we were in Washington for the public meeting of the National Heart Lung and Blood Institute. It was my first time, and it was a very interesting meeting. I was very pleased that they're spending some of their economic stimulus money on PF research. Yippee!

I stayed an extra week with my brother, then came home. I'm so sorry I don't post more - by the time I've updated the HPS Web site, blog, and managed the two HPS listservs (and the one I have for Chediak-Higashi Syndrome, another albinism-related syndrome) - I'm just out of steam.

Now that I'm sort of caught up, I"ll try to do better!

Kirkwood

Director of Outreach, Vice President

Hermansky-Pudlak Syndrome Network

One South Road

Oyster Bay, NY 11771

1 (800) 789-9HPS

www.hermansky- pudlak.org

Personal blog: www.heatherkirkwood .blogspot. com

Search the Web at www.goodsearch. com and choose the HPS Network as your charity!

[Guest guest]

-- what country do you come from? just curious! or nosey!

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Popping in again to say hello!!!!To: Breathe-Support Date: Saturday, July 4, 2009, 12:40 AM

Did you mean do I have someone living with me to help? No, I've lived on my own since I left home at 18 to come to the United States to go to school. I would very much like to move to the Washington DC area to be close to my brother and his wife (and the NIH - evil grin). But, right now I don't think I can afford to live there. Maybe someday it will be possible.

Hermansky-Pudlak Syndrome albinism 02/ PF 06

>> ... you have been one busy gal! Your head must be bulging with so much info.> I did not know you are legally blind. I'm very sorry to read this.> Do you have someone living you to be help?> Keep on keepin' on.> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Popping in again to say hello!!!!> > > > > > > Just wanted to pop in to say hello - I feel so badly that I haven't posted anything in months, although I have been keeping track of some of you on Facebook. > > It's been a very busy, but very exciting,

few months. My SSDI got approved - yahoo! Never thought I'd be so thrilled to make so little money. I'm still fighting with the long term disability insurance carrier on that part - groan. Who would have ever guessed that I'd get SSDI before the insurance I paid for to cover the gap between having to quit working and getting SSDI. > > I also never thought I'd be so happy to be legally blind either - it made getting the SSDI easier - only took me seven months. Geesh! > > I was at NIH in May for my visit in the Pirfenidone drug trial - everything was okay - my numbers had been down in January and they were the same in May. The good news is they aren't bad. But, after I went into the study my FVC went up 25 points and now it's back to where it was when I went in the study. I can't complain - really - I can't. > > After a week at "club Med" I went to Chicago. We did a huge community outreach for Hermansky-Pudlak

Syndrome. We spoke at several hospitals and clinics and even churches etc. > > Then we went to San Diego for the American Thoracic Society meeting. I was crushed because I wanted to hear the actual presentation on Pirfenidone, but I was a patient speaker for pulmonary fibrosis at a basic science session that was at the same time. One of my friends went, and they were somewhat disappointed with what they heard. > > Then we were back in Chicago for Digestive Disease Week. WoW! That meeting is so huge! It makes ATS look like a family picnic - and I thought ATS was huge! > > Then we were in Washington for the public meeting of the National Heart Lung and Blood Institute. It was my first time, and it was a very interesting meeting. I was very pleased that they're spending some of their economic stimulus money on PF research. Yippee! > > I stayed an extra week with my brother, then came home. I'm so

sorry I don't post more - by the time I've updated the HPS Web site, blog, and managed the two HPS listservs (and the one I have for Chediak-Higashi Syndrome, another albinism-related syndrome) - I'm just out of steam. > > Now that I'm sort of caught up, I"ll try to do better! > > Kirkwood> Director of Outreach, Vice President> Hermansky-Pudlak Syndrome Network> One South Road> Oyster Bay, NY 11771> 1 (800) 789-9HPS> www.hermansky- pudlak.org> > Personal blog: www.heatherkirkwood .blogspot. com> > Search the Web at www.goodsearch. com and choose the HPS Network as your charity!>

[Guest guest]

.... yes, I was asking if you had a live-in helper. I really admire you for all you do and doing it legally blind.

Bless ya gal!

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

Popping in again to say hello!!!!> > > > > > > Just wanted to pop in to say hello - I feel so badly that I haven't posted anything in months, although I have been keeping track of some of you on Facebook. > > It's been a very busy, but very exciting, few months. My SSDI got approved - yahoo! Never thought I'd be so thrilled to make so little money. I'm still fighting with the long term disability insurance carrier on that part - groan. Who would have ever guessed that I'd get SSDI before the insurance I paid for to cover the gap between having to quit working and getting SSDI. > > I also never thought I'd be so happy to be legally blind either - it made getting the SSDI easier - only took me seven months. Geesh! > > I was at NIH in May for my visit in the Pirfenidone drug trial - everything was okay - my numbers had been down in January and they were the same in May. The good news is they aren't bad. But, after I went into the study my FVC went up 25 points and now it's back to where it was when I went in the study. I can't complain - really - I can't. > > After a week at "club Med" I went to Chicago. We did a huge community outreach for Hermansky-Pudlak Syndrome. We spoke at several hospitals and clinics and even churches etc. > > Then we went to San Diego for the American Thoracic Society meeting. I was crushed because I wanted to hear the actual presentation on Pirfenidone, but I was a patient speaker for pulmonary fibrosis at a basic science session that was at the same time. One of my friends went, and they were somewhat disappointed with what they heard. > > Then we were back in Chicago for Digestive Disease Week. WoW! That meeting is so huge! It makes ATS look like a family picnic - and I thought ATS was huge! > > Then we were in Washington for the public meeting of the National Heart Lung and Blood Institute. It was my first time, and it was a very interesting meeting. I was very pleased that they're spending some of their economic stimulus money on PF research. Yippee! > > I stayed an extra week with my brother, then came home. I'm so sorry I don't post more - by the time I've updated the HPS Web site, blog, and managed the two HPS listservs (and the one I have for Chediak-Higashi Syndrome, another albinism-related syndrome) - I'm just out of steam. > > Now that I'm sort of caught up, I"ll try to do better! > > Kirkwood> Director of Outreach, Vice President> Hermansky-Pudlak Syndrome Network> One South Road> Oyster Bay, NY 11771> 1 (800) 789-9HPS> www.hermansky-pudlak.org> > Personal blog: www.heatherkirkwood.blogspot.com> > Search the Web at www.goodsearch.com and choose the HPS Network as your charity!>