Re: PF from radiation-Dawn & Cees

[Guest guest]

Hi Dawn & Cees,

I'm 42 years old & was diagnosed 10/08. The hardest thing 4 me is that i forget that i can't breathe...everytime i get up or move it is then that i am quickly reminded. Before i was diagnosed i knew there was something wrong w/me but had no idea that this is what it was.

Last year, when i got lung biopsy-i almost died..i mean i died. So to be here now is TRULY a blessing for ME. I thought, how can i live like this, what good am i? I can't even make my own bed. I can't even cook hardly without having to stop every 2 seconds. I can't walk anymore, i'm supposed to be here to help my disabled mother...how am i supposed to help her?I mean we live together..what's gonna happen to her? Who's gonna provide for her? who's gonna feed her? I unlike YOU, have never been married, no children, no boyfriend...i've never had the luxury of being loved personally or have the blessing of being touched even just to have someone hold my hand, stroke my hair, touch my face. Thank God for my massage therapist that at least rubs my back , my head, my feet-some sort of physical contact (female of course). And of course my baby great niece that does give me kisses & hugs

whenever-they bring her to visit.

Anyway, i think what happened...all these years i've been waiting for my prince charming? to have kids? to have a life? To grow old with someone? Well, after last years diagnosis...that completely changed. I mean who's gonna want me...a disabled girl? NOONE. I certainly won't even dare to have children to pass on this horrific disease to. Then, ONE DAY i heard a voice say.. & WHO TOLD YOU YOU COULDN'T GET MARRIED? AND WHO TOLD YOU YOU WOULD NEVER HAVE CHILDREN? OMG, it gave me such hope. For many many months after my Pulmo Dr. told me-you have 2-5 years & maybe w/lung transplnat 15-20-i mean this all happened the 1st day i met him-SHOCKER! It was soo very hard & sometimes still is...to not think about death EVERYDAY. BUT, when you start LIVING & start DOING I MEAN like do things that make YOU happy-it helps-I laugh so hard watching frazer & the Nanny, funny movies..i LOVE

to eat!! Chocolate-yummy, ice cream!!. I have devoted & vowed to enjoy WHAT life i do have. AFter the lung biopsy, which is A LONG STORY..(26 day stay-4 surgeries later-2 collapsed lungs-horrible horrible experience) i said to myself (and yes we sometimes have to talk to ourselves) i might not be @ my best quality of life...but I AM ALIVE NOW! And for that I am THANKFUL! I dont' want to die & i'm glad that even though it's coming & it does come to & for us all...i'm not there yet & neither are you or anyone that is reading this right now. THANK GOD! So, for the little breath that i have, & all the struggles we all face daily...thats what keeps me going. I'm glad i'm here to chat with you guys & i'm glad that you guys are sharing with me too. Our families really don't get us...but we get each other & its WONDERFUL! So thank you to everyone in this group & thank you DAWN & CEES...keep writing NO MATTER

WHAT....we're here to listen & well just know that WE'RE HERE!!!!LOVE YOU GUYS! GOD BLESS YOU ALL!

Dot/uip 10/08/42/sa,tx

Subject: PF from radiationTo: Breathe-Support Date: Sunday, November 8, 2009, 6:54 PM

Hi, I'm new here and need to hear from others who feel as old as I do. I'm only 43 but my body is about 20 years older. I've battled Hodgkin's Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on oxygen 24/7, use a bi-pap and get out of breath with any movement. I am in a rehab program 3x a week and was told I have a week diaphragm too due to being laid up after some stomach surgery, so I am going to try singing lessons to help me breath differently. I am so tired from breathing, it takes so much energy. I am in a support group for the cancer and in private therapy for everything else. But when does your quality of life take priority over trying endlessly to beat all these health issues? I have a king of a husband and a huge loving support system but none of that can help me breath any better. Sorry for complaining so soon, it's just so tough and I know someone out there has walked in my shoes, I just need to know how do you keep

on walking???

[Guest guest]

A great book that I read when home with my herniated disk was "Anatomy of an Illness" by Norman Cousins

he had some "fatal" disease

he decided that laughter and vitiamin C would cure him

so he started watching funny movies in the hospital, the laughter would provide endomorphins to enable him to sleep, i forget what what the vitamin c did

at any rate, he lived and was able to write the book

the book also talks about other people with a variety of illnesses and how they dealt with them

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: PF from radiation-Dawn & CeesTo: Breathe-Support Date: Monday, November 9, 2009, 1:06 PM

Hi Dawn & Cees,

I'm 42 years old & was diagnosed 10/08. The hardest thing 4 me is that i forget that i can't breathe...everytime i get up or move it is then that i am quickly reminded. Before i was diagnosed i knew there was something wrong w/me but had no idea that this is what it was.

Last year, when i got lung biopsy-i almost died..i mean i died. So to be here now is TRULY a blessing for ME. I thought, how can i live like this, what good am i? I can't even make my own bed. I can't even cook hardly without having to stop every 2 seconds. I can't walk anymore, i'm supposed to be here to help my disabled mother...how am i supposed to help her?I mean we live together..what' s gonna happen to her? Who's gonna provide for her? who's gonna feed her? I unlike YOU, have never been married, no children, no boyfriend... i've never had the luxury of being loved personally or have the blessing of being touched even just to have someone hold my hand, stroke my hair, touch my face. Thank God for my massage therapist that at least rubs my back , my head, my feet-some sort of physical contact (female of course). And of course my baby great niece that does give me kisses & hugs

whenever-they bring her to visit.

Anyway, i think what happened...all these years i've been waiting for my prince charming? to have kids? to have a life? To grow old with someone? Well, after last years diagnosis... that completely changed. I mean who's gonna want me...a disabled girl? NOONE. I certainly won't even dare to have children to pass on this horrific disease to. Then, ONE DAY i heard a voice say.. & WHO TOLD YOU YOU COULDN'T GET MARRIED? AND WHO TOLD YOU YOU WOULD NEVER HAVE CHILDREN? OMG, it gave me such hope. For many many months after my Pulmo Dr. told me-you have 2-5 years & maybe w/lung transplnat 15-20-i mean this all happened the 1st day i met him-SHOCKER! It was soo very hard & sometimes still is...to not think about death EVERYDAY. BUT, when you start LIVING & start DOING I MEAN like do things that make YOU happy-it helps-I laugh so hard watching frazer & the Nanny, funny movies..i LOVE

to eat!! Chocolate-yummy, ice cream!!. I have devoted & vowed to enjoy WHAT life i do have. AFter the lung biopsy, which is A LONG STORY..(26 day stay-4 surgeries later-2 collapsed lungs-horrible horrible experience) i said to myself (and yes we sometimes have to talk to ourselves) i might not be @ my best quality of life...but I AM ALIVE NOW! And for that I am THANKFUL! I dont' want to die & i'm glad that even though it's coming & it does come to & for us all...i'm not there yet & neither are you or anyone that is reading this right now. THANK GOD! So, for the little breath that i have, & all the struggles we all face daily...thats what keeps me going. I'm glad i'm here to chat with you guys & i'm glad that you guys are sharing with me too. Our families really don't get us...but we get each other & its WONDERFUL! So thank you to everyone in this group & thank you DAWN & CEES...keep writing NO MATTER

WHAT....we're here to listen & well just know that WE'RE HERE!!!!LOVE YOU GUYS! GOD BLESS YOU ALL!

Dot/uip 10/08/42/sa, tx

From: Dawn <dawn.urso (AT) yahoo (DOT) com>Subject: PF from radiationTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 8, 2009, 6:54 PM

Hi, I'm new here and need to hear from others who feel as old as I do. I'm only 43 but my body is about 20 years older. I've battled Hodgkin's Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on oxygen 24/7, use a bi-pap and get out of breath with any movement. I am in a rehab program 3x a week and was told I have a week diaphragm too due to being laid up after some stomach surgery, so I am going to try singing lessons to help me breath differently. I am so tired from breathing, it takes so much energy. I am in a support group for the cancer and in private therapy for everything else. But when does your quality of life take priority over trying endlessly to beat all these health issues? I have a king of a husband and a huge loving support system but none of that can help me breath any better. Sorry for complaining so soon, it's just so tough and I know someone out there has walked in my shoes, I just need to know how do you keep

on walking???