Re: Hope

[Guest guest]

Walt,

That's not barging in, it's exactly the kind of thing I was hoping someone else would post. This disease is a no bargain and it's so easy to get discouraged and yes to lose hope. It quite literally knocks the wind out of us. It may very well have been me that posted what you remember, though others have said similar things. My diagnosis did feel like that to a large extent. I was in a job that I loathed, had unrelenting problems with my son which caused me to be in debt up to my eyeballs and then some. I couldn't leave my job....I needed my job. What is that saying? We make plans and God laughs.... it was alot like that. I came home from work on the Friday before Memorial Day weekend and by Monday I was in the ICU....ooops. Maybe I waited too long to listen to what my body and soul were trying to tell me.

I'm glad you've had a good two years....here's to 20 more!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, June 11, 2009 1:47:13 PMSubject: Hope

I would like to chime in if that’s ok? Everyone one needs hope “If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream.†I too was told by the doc’s at university of Washington that I had 3 to 5 years back in 06. I was devastated at the though of all the things I waited to do and thought would never be. My 20 year Marriage ended and I had lost hope. Then I was reading a post way back when and I am not sure but I think it was Beth that said it. (something like) (She was going along with life and God grab her by the nap of the neck shook her up) WOW that changed my life. I am 52 and have lived more in the last 2 years then I had in the last 20. Yes I have my days and there has been times that my body has

told me that I can’t do “that†anymore. Ever since that day I do as much as I can while I can. The “Crap†as someone put it that is thrown at us will not destroy my Hope. Thank for letting me barge in.

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: The importance of hopeTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 6:16 AM

Peggy,

I so agree with what you wrote in this message about hope. It is downright cruel to take someones hope away. We all need reasons to get up in the morning and keep fighting. No one has the right to take that away from anyone.

We had a member of this board who has since passed away. Joyce Dalton fought long and fought hard to LIVE. She always said she wasn't ready to die because, "I'm just so curious about what will happen next". She was and still is my hero. She had pulmonary fibrosis, pulmonary hypertension and multiple auto immune diseases and yet she got up every single morning and fought the battle. She and her husband traveled to one of our get togethers by car when she was on oxygen at the rate of 8 liters continuously. She was one of the most determined women I've ever had the privilege of knowing.

There are people like her on our board now who just keep getting up every day and LIVING THEIR LIVES in spite of the crap that keeps getting thrown at us. We draw strength from each other. I'm so thankful for every person here.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 1:28:10 AMSubject: Re: introduction

Hi Beverly,I don't think you'd like walking in the Bellevue Mall unless you like expensive stores. It is pretty crowded with self absorbed people and walking there would be tough for exercise. I know of another place that is unique and fun and you can play chess for exercise. It has a huge chess board where you move the pieces physically from one spot to another (they are light weight). It's very diverse and has a great reasonable priced food court - maybe we can go there once you get this way.I sold two homes in down markets. If you want to e-mail me at my e-mail address I can send you my phone # and we can chat about my approach to it. Both sold within 45 days and the price was good on both too. Obviously you can't sell above market but there are things that help a home show nicer than others in the same price range. I'd love to chat about that next week if you want. I have nation wide long distance and can call you or I can e-mail

you my # and you can call me if you feel more comfortable with that. I think you should show your doctor that he is wrong. I don't know where doctors get off telling people things like that. At any point you could stabilize right? Maybe next week they'll come up with a cure. We all need hope and to take someone's hope away is a crime if you ask me. I think all human beings know when it is time and they are not willing to fight any longer. For my Dad who died of emphysema (self induced huge smoker - not me though) he was totally ready and had enough of it by the end. He enjoyed the last days and still had everyone laughing and lived to be 83 inspite of 40 years of smoking 4 packs a day. E-mail me at artquilterpeg@ yahoo.com if you want to talk. I've thought about starting a business to do this but will give you my secrets for

free because I want to help others who are helping me with their support.Love,Peggy Ellis (wife, mother, quilter, tennis player, amateur comedienne and ILD 2007, 53 yo) I want to be defined by more than my disease and age! > > > > > > > > > > > > > > > > > > > > > From: artquilterpeg <artquilterpeg@ ...>> > > > > > > Subject: introduction> > > > > > > To: Breathe-Support@ yahoogroups. com> > > > > > > Date: Tuesday, June 9, 2009, 7:26 PM> > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well

and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time> > > > > > > between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> > > > > > >> >

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