Re: Trials & Tribulations

[Guest guest]

Bruce,

I think I can understand where you are coming from. I too have been through many trials and tribulations; losses and sufferings so deep and painful that if you could die from them I thought I surely would have. Mental wounds so severe and long lasting that I begged and pleaded God to please take it away.

But now I can see that all of my sufferings actually prepared me for the next trial, this cruel diagnosis. I was shocked and terribly scared. When the doctors told me there was no cure and that the scarring would be progressive and all they could was to help slow down the process I felt devastated. I cried and grieved for myself and my children that they would have to go through this with me. But, you know, it seemed like these feelings only lasted for a moment of time. And then I just did what I always do...I got busy...doing what I have done for the past 35 years of my adult life adapting and rearranging my life to what it is now.

I started learning about the disease (which is ongoing); I love research and learning, so that came easily. And I knew I needed people... to help me through this so I found this support group; and believe me when I say I have been to a lot of counselors and groups in my lifetime and this one is the BEST! I just wish I could meet everyone in person some day!

I also feel confident and comfortable in my physicians and the care I receive and that was important to me. The doctor's didn't give me false hope or promises, but said they would help me to have as normal life as possible and for some reason that made me feel better.

Strange, but I can honestly say, I don't feel alone in this aflfiction.

All-in-all I feel ok and fairly up-beat most of time. I'm good today, right now at this moment, this stage, whatever it is.

I always tell myself that things could be worse and believe it!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Tue, December 15, 2009 7:51:41 PMSubject: Re: Peggy and Bruce

DyaneI struggled through the mental and emotional challenges before beingdiagnosed with PF. I've experienced the downs and the anger and thedesperation. It's one thing that makes the disease easier for me becauseI can honestly say I've been through worse. The thing I do know is thatno physical illness can rival mental illness and no physical sufferingwill ever equal the depression or anxiety or hopelessness we can feel.Thats why I'm so firm when I talk about managing the mental andemotional aspects of this disease. Ultimately, if we do that, we liveand find happiness within it all.I'm also fortunate that as soon as I was diagnosed I hit the internetand I found support groups here. I visited and I read and I absorbed andlearned. I saw people so much further advanced than I was but stillliving life to its fullest. When you're on 2 to 3 lpm but a friend getsup, dresses, drives and meets you

for lunch and is beautiful andcharming even though she's on 10 lpm or even 15 lpm ultimately whenwalking, it makes an impression. When you know she's going home in timefor her physical rehab (therapist to here home) then its hard to makeexcuses for why I can't exercise or can't get out and walk.I've gotten so much practical advice here. Yes, I came here before myVATS and I've read about diagnoses and prednisone and all the otheroptions. But, I've also learned far more about life and living with adisease like this. Yes, friends have been lost but I do rejoice far morein their lives than any mourning. I smile when I think of them, evenlaugh sometimes. Ultimately, the ones I feel sorry for are all those whohaven't found an online or local support group and are wading around ina deep pool of confusion and ignorance, not understanding the disease orthe life they can have with it. I have an uncle who got

COPD and spentthe last 30 years of his life in his recliner or in bed. No one told himhe had a choice. I know there are so many diagnosed with PF every dayand being told basically to go home and sit on the sofa and wait to die.Those are the ones I hurt for. We're a very small percentage of thosewith PF. We're the lucky ones.>> Peggy/Bruce>> Between the two of you, you've managed to make me cry and laugh at the> same time>> Peggy - you continue to be an example to us all on being gracious and> loving. I wish so much I could make it to Florida to meet you.>> Bruce - I will print and post your post in large letters on my> refrigerator

and at work. You continue to astound me with yourability> to put what we want to express in such clear and rich language. Your> peace is palpable even through a computer.> Dyane, 54, Phoenix, IIP 02 now UIP? 09, Breast Cancer, Psoriasis,> Lipodermatosclerosi s, Diabetes, and now a RA like autoimmunecomponent,> yadda yadda yadda.>>> "Life is not a journey to the grave with intentions of arriving is a> pretty, well-preserved body, but rather to skid in broadside,thoroughly> used up, totally worn out, chocolate in one hand, Margaritas in the> other, loudly proclaiming "Holy **** What a ride!".">

[Guest guest]

,

You put that into words beautifully and said pretty much exactly the way I feel about this and how I've approached it.

I guess the thing I've become best at in my life is adapting to all kinds of circumstances and situations. This in many ways is just another circumstance to which I must adapt.

I have been determined to not allow this to rob me of my happiness and so far it hasn't!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, December 17, 2009 10:23:37 PMSubject: Re: Trials & Tribulations

Bruce,

I think I can understand where you are coming from. I too have been through many trials and tribulations; losses and sufferings so deep and painful that if you could die from them I thought I surely would have. Mental wounds so severe and long lasting that I begged and pleaded God to please take it away.

But now I can see that all of my sufferings actually prepared me for the next trial, this cruel diagnosis. I was shocked and terribly scared. When the doctors told me there was no cure and that the scarring would be progressive and all they could was to help slow down the process I felt devastated. I cried and grieved for myself and my children that they would have to go through this with me. But, you know, it seemed like these feelings only lasted for a moment of time. And then I just did what I always do...I got busy...doing what I have done for the past 35 years of my adult life adapting and rearranging my life to what it is now.

I started learning about the disease (which is ongoing); I love research and learning, so that came easily. And I knew I needed people... to help me through this so I found this support group; and believe me when I say I have been to a lot of counselors and groups in my lifetime and this one is the BEST! I just wish I could meet everyone in person some day!

I also feel confident and comfortable in my physicians and the care I receive and that was important to me. The doctor's didn't give me false hope or promises, but said they would help me to have as normal life as possible and for some reason that made me feel better.

Strange, but I can honestly say, I don't feel alone in this aflfiction.

All-in-all I feel ok and fairly up-beat most of time. I'm good today, right now at this moment, this stage, whatever it is.

I always tell myself that things could be worse and believe it!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Tue, December 15, 2009 7:51:41 PMSubject: Re: Peggy and Bruce

DyaneI struggled through the mental and emotional challenges before beingdiagnosed with PF. I've experienced the downs and the anger and thedesperation. It's one thing that makes the disease easier for me becauseI can honestly say I've been through worse. The thing I do know is thatno physical illness can rival mental illness and no physical sufferingwill ever equal the depression or anxiety or hopelessness we can feel.Thats why I'm so firm when I talk about managing the mental andemotional aspects of this disease. Ultimately, if we do that, we liveand find happiness within it all.I'm also fortunate that as soon as I was diagnosed I hit the internetand I found support groups here. I visited and I read and I absorbed andlearned. I saw people so much further advanced than I was but stillliving life to its fullest. When you're on 2 to 3 lpm but a friend getsup, dresses, drives and meets you

for lunch and is beautiful andcharming even though she's on 10 lpm or even 15 lpm ultimately whenwalking, it makes an impression. When you know she's going home in timefor her physical rehab (therapist to here home) then its hard to makeexcuses for why I can't exercise or can't get out and walk.I've gotten so much practical advice here. Yes, I came here before myVATS and I've read about diagnoses and prednisone and all the otheroptions. But, I've also learned far more about life and living with adisease like this. Yes, friends have been lost but I do rejoice far morein their lives than any mourning. I smile when I think of them, evenlaugh sometimes. Ultimately, the ones I feel sorry for are all those whohaven't found an online or local support group and are wading around ina deep pool of confusion and ignorance, not understanding the disease orthe life they can have with it. I have an uncle who got

COPD and spentthe last 30 years of his life in his recliner or in bed. No one told himhe had a choice. I know there are so many diagnosed with PF every dayand being told basically to go home and sit on the sofa and wait to die.Those are the ones I hurt for. We're a very small percentage of thosewith PF. We're the lucky ones.>> Peggy/Bruce>> Between the two of you, you've managed to make me cry and laugh at the> same time>> Peggy - you continue to be an example to us all on being gracious and> loving. I wish so much I could make it to Florida to meet you.>> Bruce - I will print and post your post in large letters on my> refrigerator

and at work. You continue to astound me with yourability> to put what we want to express in such clear and rich language. Your> peace is palpable even through a computer.> Dyane, 54, Phoenix, IIP 02 now UIP? 09, Breast Cancer, Psoriasis,> Lipodermatosclerosi s, Diabetes, and now a RA like autoimmunecomponent,> yadda yadda yadda.>>> "Life is not a journey to the grave with intentions of arriving is a> pretty, well-preserved body, but rather to skid in broadside,thoroughly> used up, totally worn out, chocolate in one hand, Margaritas in the> other, loudly proclaiming "Holy **** What a ride!".">