Re: hopeless, lonely and afraid

August 19, 2006

Oh ....God I hate reading that, knowing you're in so much pain and not being able to do a thing about it. I'd call but I'm afraid you might have gone to sleep and I don't want wake you and your family at 3 in the morning. If you are up and you see this post and you want to talk, call me. It doesnt' matter what time it is.

I can't and won't tell you how to feel. You're entitled to be angry and afraid and ticked off. Hell any of us can feel anything at all about this disease and no one who doesn't have it should blink an eye. My brother made the mistake of commenting on my need for a nap after a fairly simple trip to the drug store and then the grocery store a couple of weeks ago. He never knew what hit him. I turned on him. I don't even remember exactly what I said, but he's still apologizing, two weeks later. He's lucky I didn't knock him out with a 'b' tank.

Our lives have changed forever. That's it and we have absolutely no control over it. I do know what it's like to go from being the anchor in the family, the strong one, the one everyone went to for help to being the helpless one, the needy one, the one who can't even walk around the block without a heart monitor, an oxygen tank and a cell phone. I mean how freakin pathetic is that?

I'm not going to pretend to know how it feels to be dealing with this with such young children. I know how hard it is with my son and how I worry for him (he's not your typical young adult but that's a story for another day) but he is still 21, not 10. Watching Ashli hurt and not be able to take it away has got to be devastating.

you and I both know that your husband would rather have you with the tube up your nose than not have you at all. That's the choice and you know in your heart what his choice would be. But all the crap does put a barrier between you. It's like you're going somewhere that he can't follow and can't understand. Does that make sense? It's just a degree of separation, of distance that wasn't there before.And that hurts.

Oh , I could go on and on but it isn't going to change anything. All I can say is I'm here, I love you to pieces and I do have some idea of what you're going through. My story isn't the same but pain is pain and fear is fear and we're all walking it together.

As for how you go on when it feels like everything has been taken away or changed by this monster? Good question... one moment at a time is all I have come up with for myself. Sometimes it's just one minute to the next asking for the grace and strength to keep going and facing it.

You're still here . Things are completly different but life is still precious. Your husband and children still need you and you are still here for them. Maybe not in the same way you were but that's surface bs. You can't do all the same things that you could but you are still here to love them and will be for some time to come. Please don't give up on yourself. I'm here, we're all here to love you and support you through the bad days.

You are loved and precious Miss . None of this is right or fair or understandable. It just is and we struggle to find ways to cope. You do the best you can and the rest is up to God.

Call me anytime you need to talk (I'm sorry I missed you earlier).

Beth IPF 06/06Draw close. Hold hands. Life is short. God is good.

hopeless, lonely and afraid

it's 1:30 in the morning and i am so fucking mad i could just shoot my own fucking self and not think twice about it.today was actually ashli's birthday and i took her to a karaoe show, which is nothing unusual for me. only tonight i decided to sing to her "in my daughter's eyes" by martina mcbride. both she and i cried through the whole song. then once she got up and said she wanted to read something to me called "without my mom"she couldn't even get passed the 1st sentence for the tears.what do you do or say to a 10 yr old in that situation???i hate this damn disease! and the way it runs my life! i hate not being able to make love to my husband without a hose up my fricken nose! i hate not being able to watch one inning of my kids softball/baseball games without a hose up my nose. i hate the person i have become since this God awful disease has taken over my life.i hate the fact that i cried so

much tonight it made my husband cry...i hate this damn disease and at this very moment wish i were fricken dead because things would be so much easier for me and my family!you have no idea what it is like to go from being the absolute strongest link in your whole entire family to being the absolute most weakest link overnight. I HATE IT! I HATE IT! I HATE IT!I just want things to go back to the way they were about 18 months ago, when i was vibrant and healthy and not a damn thing stood in my way of anything!Before this disease came into my life, not only was I a better mother but a 3rd year student in surgical technology.i feel so lost and helpless I am sooooo sick of fighting to breathe and survive day to day. i do at this very moment just wish it was all over for me.I know that is a very sad thing to say but it is exactly how I feel at this very moment. zI try to be the best mom, wofe, daughter,

sister...... that i can be. i just feel like everything is closing in around me and i HATE the fact thati have absolutely no control over it.i was a smoker before all of this came about and i sometimes wonder why i ever gave it up. i'm as good as dead anyhow right?!?!?!i can't bicylce anymore, or skate, or body surf or coach little league or help save lives....what in the hell is left for me?!?!?!?i try to be the rock for everyone around me, everyone i know, when is someone going to be that rock for me? when will my pain and fears end? when and how will i ever be able to sit my children down and let them know what exactly is going on with their mother and how i feel? and how much i love them and have sacrificed for them? who will comfort them in their time of need? who will be there to show me the way?i HATE what this disease has done to me as a person, as a whole, to my family, to my

friends..... ......... ..how do i find the strength to keep battling and dealing with it?hopeless in houston,jaime PF 10-05

August 19, 2006

Hi , I am so sorry we are sick. Your post got my desk top wet. We all love you and pray that you will learn to be strong for your family. It breaks my heart for someone as young as you with young children to be so sick. I am an old sinner but I will pray for god to give you strength to fight this disease and enjoy your family. I know what it is to be depressed. May god bless, Grey IPS 10/05

hopeless, lonely and afraid

it's 1:30 in the morning and i am so fucking mad i could just shoot my own fucking self and not think twice about it.today was actually ashli's birthday and i took her to a karaoe show, which is nothing unusual for me. only tonight i decided to sing to her "in my daughter's eyes" by martina mcbride. both she and i cried through the whole song. then once she got up and said she wanted to read something to me called "without my mom"she couldn't even get passed the 1st sentence for the tears.what do you do or say to a 10 yr old in that situation???i hate this damn disease! and the way it runs my life! i hate not being able to make love to my husband without a hose up my fricken nose! i hate not being able to watch one inning of my kids softball/baseball games without a hose up my nose. i hate the person i have become since this God awful disease has taken over my life.i hate the fact that i cried so much tonight it made my husband cry...i hate this damn disease and at this very moment wish i were fricken dead because things would be so much easier for me and my family!you have no idea what it is like to go from being the absolute strongest link in your whole entire family to being the absolute most weakest link overnight. I HATE IT! I HATE IT! I HATE IT!I just want things to go back to the way they were about 18 months ago, when i was vibrant and healthy and not a damn thing stood in my way of anything!Before this disease came into my life, not only was I a better mother but a 3rd year student in surgical technology.i feel so lost and helpless I am sooooo sick of fighting to breathe and survive day to day. i do at this very moment just wish it was all over for me.I know that is a very sad thing to say but it is exactly how I feel at this very moment. zI try to be the best mom, wofe, daughter, sister......that i can be. i just feel like everything is closing in around me and i HATE the fact thati have absolutely no control over it.i was a smoker before all of this came about and i sometimes wonder why i ever gave it up. i'm as good as dead anyhow right?!?!?!i can't bicylce anymore, or skate, or body surf or coach little league or help save lives....what in the hell is left for me?!?!?!?i try to be the rock for everyone around me, everyone i know, when is someone going to be that rock for me? when will my pain and fears end? when and how will i ever be able to sit my children down and let them know what exactly is going on with their mother and how i feel? and how much i love them and have sacrificed for them? who will comfort them in their time of need? who will be there to show me the way?i HATE what this disease has done to me as a person, as a whole, to my family, to my friends................how do i find the strength to keep battling and dealing with it?hopeless in houston,jaime PF 10-05

August 19, 2006

Hi , OK Let me see, I know you are feeling a little better blowing the

top off this monster. I wish I were there to hold you and tell you

everything is going to be alright. And it just might. You will get a

new lung and things will return to somewhat normalcy. I talked to a fellow

that had a transplant (64) he is up and out like a 25 year old. Made me want

to go on with it. Keep your spirit up as much as possible, your children

will never understand at their age, we don't, I can't imagine last night.

Breaks my heart.

At this point I think you should talk to your Dr. and tell him exactly how

you feel. You still have to row this boat to the dock... Who knows but God

where that dock will be, BUT you have to FIGHT this thing. Don't let it

invade your soul. You know how to live and live well. The hose is just a

thang..(jaime quote) Ashli is not old enough to carry this burden much less

Nick. You don't have a choice but to make their lives as full as possible.

" , I'm telling you God can help you so very much. When things get as

dark as they were last night, Try try try to just talk to Him.. He will hear

you and give you peace. " Jesus is our guide and our comforter. Please lay

this at his feet.

I love you honey, I feel like your mine.

Please let us know that you are alright

" God hold close. "

Much Love and Prayers, Peggy 9/04 ipf

> it's 1:30 in the morning and i am so fucking mad i could just shoot

> my own fucking self and not think twice about it.

>

> today was actually ashli's birthday and i took her to a karaoe show,

> which is nothing unusual for me. only tonight i decided to sing to

> her " in my daughter's eyes " by martina mcbride. both she and i cried

> through the whole song. then once she got up and said she wanted to

> read something to me called " without my mom "

>

> she couldn't even get passed the 1st sentence for the tears.

>

> what do you do or say to a 10 yr old in that situation???

>

> i hate this damn disease! and the way it runs my life! i hate not

> being able to make love to my husband without a hose up my fricken

> nose! i hate not being able to watch one inning of my kids

> softball/baseball games without a hose up my nose. i hate the person

> i have become since this God awful disease has taken over my life.i

> hate the fact that i cried so much tonight it made my husband

> cry...i hate this damn disease and at this very moment wish i were

> fricken dead because things would be so much easier for me and my

> family!

>

> you have no idea what it is like to go from being the absolute

> strongest link in your whole entire family to being the absolute

> most weakest link overnight. I HATE IT! I HATE IT! I HATE IT!

>

> I just want things to go back to the way they were about 18 months

> ago, when i was vibrant and healthy and not a damn thing stood in

> my way of anything!

>

> Before this disease came into my life, not only was I a better

> mother but a 3rd year student in surgical technology.i feel so lost

> and helpless I am sooooo sick of fighting to breathe and survive day

> to day. i do at this very moment just wish it was all over for me.

>

> I know that is a very sad thing to say but it is exactly how I feel

> at this very moment. zI try to be the best mom, wofe, daughter,

> sister......that i can be. i just feel like everything is closing in

> around me and i HATE the fact thati have absolutely no control over

> it.

>

> i was a smoker before all of this came about and i sometimes wonder

> why i ever gave it up. i'm as good as dead anyhow right?!?!?!

>

> i can't bicylce anymore, or skate, or body surf or coach little

> league or help save lives....what in the hell is left for me?!?!?!?

>

> i try to be the rock for everyone around me, everyone i know, when

> is someone going to be that rock for me? when will my pain and fears

> end? when and how will i ever be able to sit my children down and

> let them know what exactly is going on with their mother and how i

> feel? and how much i love them and have sacrificed for them? who

> will comfort them in their time of need? who will be there to show

> me the way?

>

> i HATE what this disease has done to me as a person, as a whole, to

> my family, to my friends................how do i find the strength

> to keep battling and dealing with it?

>

> hopeless in houston,

>

> jaime PF 10-05

>

August 19, 2006

Hi Gray, s post broke my heart. The tears come pretty easy these days.

I just wanted to tell you that once you've ask forgiveness ALL your sins are

covered by the blood of Jesus..NEVER to be recalled by Him again. So have

heart and stick to your faith.

Much Love and Prayers, Peggy 9/04 ipf

> Hi , I am so sorry we are sick. Your post got my desk top wet. We all

> love you and pray that you will learn to be strong for your family. It breaks

> my heart for someone as young as you with young children to be so sick. I am

> an old sinner but I will pray for god to give you strength to fight this

> disease and enjoy your family. I know what it is to be depressed. May god

> bless, Grey IPS 10/05

> hopeless, lonely and afraid