Joyce Rudy

[Guest guest]

Joyce,

I've been thinking alot about your recent posts. The things you wrote about denial and being unwilling to believe you have this horrendous diagnosis...these are things all of us have gone through to one extent or another. I was in denial for about a year and a half before I was diagnosed. I had every excuse in the book for my fatigue and shortness of breath. I was overweight, out of shape. I told myself I was allergic to my dog and my cat (turns out I was not). I told myself that I was under tremendous stress with a job that I loathed and a son who I loved but was driving me insane. Most of these things were true to one extent or another but the one thing that I chose not to face was that I was truly ill. I came damn close to killing myself with denial. My O2 saturations when I was finally in the hands of paramedics in my living room were in the 70's. And I was just sitting on my sofa. I was in severe

congestive heart failure and a day or two from death.

Thanks to my sister (and the grace of God) my denial was abruptly terminated. She called me on my own bullsh*t and dialed 911. I was in the ICU a couple of hours later. Nearly 3 weeks in the hospital, a ton of Lasix and other meds to stablize my heart, a course of IV solumedrol and an open lung biopsy later, I had some answers. I was sick, down but not out. I went to pulmonary rehab later that summer and I fought my way back. And I do mean fought. We had another Joyce on the board not too long ago. She did battle with this disease every day that I knew her. She fought to live and she did. For 12 long years, she fought and I'm inclined to believe she won that battle even though she has since passed away. She had pulmonary fibrosis but it never had her. She retained her humor, her compassion and her sheer joy in living till the very end.

My point in all this is to let you know that we've all dealt with this in some way. We all had a life we expected to live that was seemingly ripped away from us. But we are not left with nothing. Life is changed but it is still good.

You joined this group I'm assuming to gather information and receive support. We've given you both. I know we've said things that you're not ready to hear. But we're speaking from our own knowledge and experience. We've been on the road that you're on and we get it. You seem to think that no one here could possibly understand what you're going through. The truth is we do understand, much more than you know.

Please, please, please look after yourself carefully. You don't understand the damage that you are doing by not using the oxygen the way it's been prescribed. We do understand it which is why we all become so upset when you tell us what you are doing. This is my last word on the subject, I won't bring it up again. I just felt the need to try to break through that wall you've built one more time.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

[Guest guest]

My one little addition here too. When I first went on O2 I was still in denial about my dx. I didn't WANT O2 and did not like dragging a cylinder over my shoulder (it was hard to do with arthritis) ...so I didn't.

I even went as far as to have all the equip picked up by Apria (former provider). I didn't like them and used them as an excuse for "Just come and get everything"....

Of course my sob got worse and I felt worse and didn't have O2 when I knew I needed it.

I had to start all over again plus answer questions like "why don't you have the O2 that was Rx".... felt like a damn fool telling them I didn't need O2.

NOW I am really grateful I can turn on my concentrator whenever needed for as long as needed. Take it with me when we travel and the little cylinders too. Lincare bends over backwards to meet ANY need I have.

I think about ML on her 25L and I'll never complain again! I remember Joyce Dalton too and she continued to encourage the board right up to the time she died. And Ginger.

But I won't bring it up again either MB/Rudy.

MB, you are a warm caring moderator!

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Joyce Rudy

Joyce,

I've been thinking alot about your recent posts. The things you wrote about denial and being unwilling to believe you have this horrendous diagnosis...these are things all of us have gone through to one extent or another. I was in denial for about a year and a half before I was diagnosed. I had every excuse in the book for my fatigue and shortness of breath. I was overweight, out of shape. I told myself I was allergic to my dog and my cat (turns out I was not). I told myself that I was under tremendous stress with a job that I loathed and a son who I loved but was driving me insane. Most of these things were true to one extent or another but the one thing that I chose not to face was that I was truly ill. I came damn close to killing myself with denial. My O2 saturations when I was finally in the hands of paramedics in my living room were in the 70's. And I was just sitting on my sofa. I was in severe congestive heart failure and a day or two from death.

Thanks to my sister (and the grace of God) my denial was abruptly terminated. She called me on my own bullsh*t and dialed 911. I was in the ICU a couple of hours later. Nearly 3 weeks in the hospital, a ton of Lasix and other meds to stablize my heart, a course of IV solumedrol and an open lung biopsy later, I had some answers. I was sick, down but not out. I went to pulmonary rehab later that summer and I fought my way back. And I do mean fought. We had another Joyce on the board not too long ago. She did battle with this disease every day that I knew her. She fought to live and she did. For 12 long years, she fought and I'm inclined to believe she won that battle even though she has since passed away. She had pulmonary fibrosis but it never had her. She retained her humor, her compassion and her sheer joy in living till the very end.

My point in all this is to let you know that we've all dealt with this in some way. We all had a life we expected to live that was seemingly ripped away from us. But we are not left with nothing. Life is changed but it is still good.

You joined this group I'm assuming to gather information and receive support. We've given you both. I know we've said things that you're not ready to hear. But we're speaking from our own knowledge and experience. We've been on the road that you're on and we get it. You seem to think that no one here could possibly understand what you're going through. The truth is we do understand, much more than you know.

Please, please, please look after yourself carefully. You don't understand the damage that you are doing by not using the oxygen the way it's been prescribed. We do understand it which is why we all become so upset when you tell us what you are doing. This is my last word on the subject, I won't bring it up again. I just felt the need to try to break through that wall you've built one more time.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08