Monday, July 25, 2011

Inner Beauty

For attractive lips, speak words of kindness. For lovely eyes, seek out the good in people. For a slim figure, share your food with the hungry. For beautiful hair, let a child run his/her fingers through it once a day. For poise, walk with the knowledge that you never walk alone. People, even more than things, have to be restored, renewed, revived, reclaimed, redeemed; never throw out anyone. Remember, if you ever need a helping hand, you will find one at the end of each of your arms. As you grow older, you will discover that you have two hands; one for helping yourself; the other for helping others.

-A wonderful poem Audrey Hepburn wrote when asked to share her 'beauty tips.'

Thursday, July 14, 2011

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.
Melody Beattie

Tuesday, July 12, 2011

EXTRA! EXTRA! Read All About It! The Pulmonary Fibrosis Research Enhancement Act in Congress

Bi-Partisan Congressional Coalition Reaches Across the Aisle to Introduce the Pulmonary Fibrosis Research Enhancement Act in the U.S. Congress

Landmark Legislation Will Coordinate and Expand National Research on Pulmonary Fibrosis
CHICAGO, July 12, 2011 /PRNewswire/ -- The Pulmonary Fibrosis Foundation (PFF) announced today the re-introduction of the Pulmonary Fibrosis Research Enhancement Act (PFREA). Bi-partisan Lead Sponsors, Senators Christopher Coons (D-DE), Mark Kirk (R-IL), Michael Crapo (R-ID), and Patty Murray (D-WA) and Representatives Erik Paulson (R, MN-3) and Tammy Baldwin (D, WI-2) made the announcement during a press conference from Capitol Hill.
Also attending the press conference was Former Representative Mike Castle (R-DE)—an original co-sponsor of the PFREA together with Former Representative Brian Baird (D, WA-3, Ret.). Representatives and members of the PFF also attended.
The Pulmonary Fibrosis Foundation has committed to making passage of PFREA their top national legislative initiative of 2011.
An estimated 40,000 people pass away each year from PF – one person every 13 minutes. There are currently no FDA approved therapies to treat PF. Incidence of pulmonary fibrosis grew by more than 150% since 2000, to an estimated 200,000 cases, and the number is predicted to continue to rise as diagnostic strategies improve and the population ages
PFREA authorizes the creation of the first national patient surveillance registry for pulmonary fibrosis (PF). That registry will aid researchers in accumulating comprehensive data from PF patients, giving them badly needed baseline tools to help in the creation of effective treatments - and someday a cure - for PF.
Multiple peer-reviewed research findings support the creation of a national patient surveillance registry as a means for legitimate progress towards better understanding PF and finding new treatments. To learn more about the pressing need for a national surveillance registry in PF, please visit
PFREA would also establish a national PF advisory board, call for a national PF education and awareness plan, and amend the Public Health Service Act to encourage the National Institutes for Health to expand, intensify, and coordinate the activities of the Institute with respect to research on PF. PFREA ended the 111th Congress with 150 bi-partisan co-sponsors in the House of Representatives and 8 bi-partisan co-sponsors in the Senate.
Daniel M. Rose, MD, the Pulmonary Fibrosis Foundation’s President and Chief Executive Officer stated, “we are grateful for the efforts of Washington, D.C.-based law firm Hogan Lovells, pro bono counsel to the PFF, for its legislative initiatives in Washington, D.C. As a relative of three people afflicted with pulmonary fibrosis, two of whom passed away from the disease, I am proud to be in a position to help others affected by PF and assist in leading a national advocacy initiative on this issue.”
The Pulmonary Fibrosis Foundation is appealing to every PF patient, family member of a patient, or anyone who has been impacted by pulmonary fibrosis to help secure additional co-sponsors for PFREA. PFF supporters can contact their U.S. Senators and U.S. Representatives in the coming weeks and organize in-district meetings during the August Congressional recess while congresspersons return to their home states. Complete information on this advocacy effort is available at Interested advocates without Internet access can contact the PFF directly at 888-733-6741 to learn how to contact their Senator or Representative.
About Pulmonary Fibrosis
According to the National Institutes for Health, PF is a condition in which over a period of time the lung tissue becomes thickened, stiff, and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don't receive the oxygen they need. In some cases, doctors can determine the cause of the fibrosis, but in most cases, there is no known cause. When there is no known etiology for the fibrosis (and certain pathologic criteria are met) the disease is called idiopathic pulmonary fibrosis or IPF. IPF affects approximately 200,000 individuals in the US, and the annual mortality is estimated to be 40,000. At present there are no FDA approved medical therapies.

About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation is to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis community both locally and in Washington D.C., promote disease awareness, and provide a compassionate environment for patients and their families. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. From December 1-3, 2011 the PFF will host its first international scientific conference, IPF Summit 2011: From Bench to Bedside, in Chicago. The Pulmonary Fibrosis Foundation is the international resource for the pulmonary fibrosis community. For more information visit or call 888-733-6741

Thursday, July 7, 2011

Anger Management

Diary Entry:  Arrrrrrrrrrr!!

Not that there was ever a time that I would imagine my husband ever being sick with more than a cold; but in this illness, Pulmonary Fibrosis, our personal process of dealing with this disease goes beyond what I could ever imagine. 

In a strange way, it's kind of like how I imagined having my baby.  It would be difficult, but at the same time there would be a sense of serenity and love along with a deep connection.  Having my babies was a beautiful experience -but,  let me tell you, if you were in the room at the time, you would have never have called it serene! 
Oh, people warn you ahead of time that having a baby hurts, but I never really understood it until I was smack-dab in labor...  I probably looked like the picture above :)

Going through this process with my husband is very similar.  The hard part is that we are both "in labor" at the same time.  He gets angry at the situation.  Who can blame him? 
It is very difficult to understand what it is like to struggle for every breath. 
For my own sake, I am going to list the reasons that I think he is angry... He is angry that he has lost the body that he has always known.  He is angry that he took his health for granted.  He is angry about loss of freedom -that every, tiny, little movement must be thought out ahead of time. 
The loss of a future that he anticipated. 
The control of others in his life... nurses, doctors, pharmacists, and wife.  He is angry that he is angry.  Although to his defense, I believe that this can be a natural and understandable, but the steroids (prednisone) he is on, certainly doesn't seem to help in grumpyness! 

I am angry, too.  Strangely for many of the same reasons that he is.  The loss of our freedom, dreams of our future, his body that I once knew, the control of others in my life...nurses, doctors, pharmacists, paper-work, health insurance and government agencies -helpful as they may be. 
Sometimes, I am mad at him.  There.  I said it. 
I am mad at him because there is no way he can know how much I love him and how much this hurts me, but maybe it is better that way.  
This is not about me. 
Lastly, I get angry at myself that I feel this way in the first place.