Jon and friends

[Guest guest]

Jon,

I want to share something with you. Fifteen years ago my

husband committed suicide. I had filed for divorce, and my

children were 8 (my daughter) and 12 (my son). Ever since

that day, his earthly pain was over but his family's pain was

just getting started. He didn't have God in his life. There was

a spiritual void in him that allowed him to loathe himself. I

spent a harrowing two years in court trying to undo a hand-

written suicide note (although I lost both the case and an appeal),

which was like having a full-time job at a time when all I

wanted was to comfort my grieving, confused children, who

kept saying, " I thought he loved me. " When I said he did, they

always said, " not enough. " This is only a partial list of ways

his children were directly impacted by his final choice: night

terrors, post-traumatic stress disorder, bulimia, drug use,

alternative and therapeutic boarding schools, juvenile court,

difficulty trusting others, etc. When you make a choice like that,

the people who love you continue to pay the price for your pain

in countless ways from now on. I've even wondered if my IPF

didn't take root during those terrible days that were so filled

with pain and anguish, or by the rage that consumed me for

8 years afterward.

I know your family and friends love you with good reason.

You didn't choose to have this disease, but you can choose

to turn your depression and brokenness over to God, who

loves you even more. Please, please give yourself permission

to be human and I'll bet you'll see yourself more as others

do - a good, decent, and caring man who is walking a very

difficult road in this life but who nonetheless has been given

the gift of life, which is not ours to take away. Thank you for

your honesty sharing with us. The reason your words touch so

many of us is because we can relate. I pray for God's peace

to touch you, because you are more than your disease, and

love is greater than the darkness which you are feeling now.

Vicky,

Apparently ER's are much the same everywhere you go.

It's appalling how you were treated - I hope your pain

and your frazzled nerves are much relieved today.

Bonnie,

Things sounds really hard for you right now. I pray that

somehow you will manage to get an expedited hearing

and that you and your husband will be able to rest easier

soon. He sounds like a good man, and we want you to

take good care of yourself.

Kathie,

Thank you for your inspiring words. Practically every day

I get the validation that attitude is a crucial part of the

battle, but sometimes it takes everything I've got.

I admire your strength, and the courage of all of us living

with this monster, even though at times it seems to swallow

us up whole.

Hey Gang...

My VATS path report said that I have UIP. But my doctors

have all said that I have IPF, and from that & everything

I've read, I thought IPF and UIP are the same thing. Am

I wrong?

So far they know there is a familial (hereditary) form if IPF

but I didn't think they know enough about it to narrow it

down to one type. I know they've made a lot of headway

isolating the genes that are present in families where IPF

shows up in more than one member. But as with everything

else connected with this disease, studies are being done

and what is unknown is greater than what is known. My

son and I have both given blood, filled out forms, and met

with Dr. , who will speak at the upcoming

CPF-sponsored seminar and is in charge of a UT Southwestern

(my tx center) study on familial IPF.

Love and prayers,

Gwynne IPF 7/04 listed for transplant 3/07 Texas