Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 Jon I'm going to write two very different paragraphs. They both need to be said. First, I know it feels like such a blow and tough to digest. None of us think it can happen to us. Oxygen symbolizes something to us we don't want to hear. Life is suddenly not as we dreamed and we feel a loss. Now, once you get over the shock, you have a life to live. No, you shouldn't be nursing-just the risk of daily exposure. Yes, you need oxygen. Now, so what to both of those. Life takes turns, often bad ones. However, sometimes those turns we sense as bad lead us to even better places. My focus on living was heightened and my life is good. Yours can be good but thats under your control. Lots of things we can't do we once could. Maybe now you will have more time to minister or do other things important to you. And, stop right now thinking of oxygen as the enemy. It's your friend. It's what lets you function, perhaps even feel better than you have in a while. Oxygen is your friend. Yes, its new. But you can let what it symbolizes take you down or let what it can do for you buid you up. Yes, Sarcoid stinks.....PF stinks. So many things stink. Nursing is your first love but it isn't what defines you. If you're disabled, then you'll be free to use your time in ways you see fit to help others. Don't think of what you can't do, but what you can and what you'd like to do. Protect your own health and continue to live and find happiness. It's so possible. You may have the best years of your life ahead, if you make them that. > > Friends, > > Saw lung doc. Overnight saturation test due to see whether I will need O2. > > He stressed that my lungs are bad and will never get better. He is > declaring me medically disabled and does not want me returning to > bedside nursing. The VA must make reasonable accommodation > for me in the workplace or I must take a medical retirement. > > If not now, I will eventually need oxygen 274/7. > > I am devastated. I knew this was coming; the reality of it stinks. > Sarcoidosis stinks. I don't stink; God doesn't make junk. > > This hurts because I have worked as an aide or an RN since I was > 18. That's 32 years of bedside nursing. It's my first love, and knowing > I cannot return to it makes me cry. > > Thanks for letting me share, > jon > 50, sarcoid 1/9 > -- > Two wrongs don't make a right, > but two 's make an airplane. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 I was also put on oxygen at the moment of my diagnosis. The belief is that I should have been diagnosed around 18 months earlier. I had a CT pointing it out two months earlier but no one seemed to read that part. Thats another reason I get copies of everything now. I was a bit shocked at hearing I had a terminal disease I'd never heard of. I went in expecting at worse COPD because that was the worst I knew. However, I wish i'd had oxygen sooner, although glad I wasn't diagnosed sooner as i wasn't in a mental state to handle it. But, I've had a good year and a half since diagnosis. I had a good day today. I intend to have a good day tomorrow even if we are iced in as expected. I've already done things that I might not have done had I lived to 80. Just a simple thing like my plans for March of this year. I would have probably been working 65 hours a week and stressed out and who knows what. Instead, while I do have some doctor's appointments in March (mostly not PF related), I have a trip to Orlando planned. A pleasure trip (I travelled at least a million miles on business but never on pleasure before the last two years). I'll see a bunch of friends. I'll take two days going, be there three or four, and then take two driving back unless I decide to stop along the way. Before diagnosis, I knew there was something wrong with me not being detected. Now, it all makes sense. Now I understand why I feel the way I do. Now, I can accomodate my disease appropriately. I was closer to death three years ago than I am now, because I wasn't living. Now, i'm taking advantage of whatever life and health I have. I make more intelligent choices for myself. I use my energy for me. Living life takes some effort and thought and commitment but I'm willing to give it. I don't really figure death is going to take much from me so I'll let it take care of itself when the time comes. > > Margaret, > I had a similar experience. On Friday 5/26/06 I worked a full day and on Monday 5/30/06 I was in the ICU in congestive heart failure secondary to my lung disease. I've been on O2 24/7 since that day. > Life had changed utterly and it takes a long time to accept it. Two and a half years later, I know that life goes on, not the same but still good. > > Beth in North Carolina > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Margaret McConnell margaretmcconnell64@... > To: Breathe-Support > Sent: Monday, January 26, 2009 5:54:37 PM > Subject: Re: lung followup > > > Jon, > > Beth said it so well. I had no fore warning and went directly from diagnosis to oxygen 24/7. My mistake was wasting a year being in shock, numb and immobilized. I couldn't even cry until I started living again. I lived my life last year.This year, although my condition has worsened, I am starting to make plans and dream again. I will pray for you and remember there are many ways that you can use your skills and knowledge of nursing and be with patients other than bed side care. Take good care of yourself and let others be there for you as you have been for so many...remember there are those who love what they are doing as you have. Tears are good, they are proof that you care about life > > Margaret > > > > > ________________________________ > From: Beth mbmurtha (AT) yahoo (DOT) com> > To: Breathe-Support@ yahoogroups. com > Sent: Monday, January 26, 2009 11:32:56 AM > Subject: Re: lung followup > > > Jon, > I'm so sorry you are going through this. You're right it stinks, no getting around it. Allow yourself to grieve, be patient. I've been where you are and it feels like the world is ending. > You are not alone, never were and never will be. > > Beth in North Carolina > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Jon Egger revegger (AT) gmail (DOT) com> > To: Breathe-Support@ yahoogroups. com > Sent: Monday, January 26, 2009 3:26:38 PM > Subject: lung followup > > > Friends, > > Saw lung doc. Overnight saturation test due to see whether I will need O2. > > He stressed that my lungs are bad and will never get better. He is > declaring me medically disabled and does not want me returning to > bedside nursing. The VA must make reasonable accommodation > for me in the workplace or I must take a medical retirement. > > If not now, I will eventually need oxygen 274/7. > > I am devastated. I knew this was coming; the reality of it stinks. > Sarcoidosis stinks. I don't stink; God doesn't make junk. > > This hurts because I have worked as an aide or an RN since I was > 18. That's 32 years of bedside nursing. It's my first love, and knowing > I cannot return to it makes me cry. > > Thanks for letting me share, > jon > 50, sarcoid 1/9 > -- > Two wrongs don't make a right, > but two 's make an airplane. > Quote Link to comment Share on other sites More sharing options...
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