Re: Re: [new and scared

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Hi and Eileen, First let me assure you, you will not die this or next week. I have IPF/UIP. I am now 66 years old..  I was diagnosed in June 2004 so I think that speaks to the issue of dieing quickly. I have been on 02 24/7 for four years now. I started on 2L and can sit without it. BUT when I get up and mess around slowly I use 6L then walking or anything active I use 8L. I do know this is scary to you... shoot it is scary to all of us. You will adjust. It is a monster of a disease. The majority of us (that are on the board a lot) go to University Hospital Clinics for treatment. I was on prednisone for a year. Won't do that again.. The only thing I take now is wellbutrin, ambian for sleep. I use an inhaler for the tight chest times. I am glad I am not on a lot of meds because I just am NOT a good pill taker. I saw one of you went to Shands in Gainesville. I have been going there since I was diagnosed in 2004. LOVE my Doctor. I live in Silver Springs. It is about an hour from me. I have a nephew that lives in Baton Rouge, He is the music director for Jimmy Swaggart. Well it is really late and i am headed to bed.. Rest easy ladies. Take one day at a time. Take control of YOU..God Bless.Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Hi Eileen, my name is laura, I was diagnosed too with Pulmnary fibrosis, then i got the diagnosis of pulmonary hipertension, it got worse pretty fast, because i was dagnosed with scleroderma about two ears ago, and then my lungs didn't look nearly as bad as they do now.  I have great hopes, I pray everyday for  a miracle, i have three sons, my oldest son is 19 years old, my other son is 11 and the youngest is autistic his name is Robby, As you can see my little son is the one who needs me the most, and I wish i could stay with him for many, many more years. Only God knows if I would be able to live many more years. In the meantime we are trying hard to make ends meet, my husband is retired and we are living on Social security benefits, my insurance is the high risk insurance because no other insurance company would take  me with a preexisting condition, anyway, the monthly payment for my insurance went up tp more than 300 por month and the deductible is 2000, and well is very complicated. I wasn't born here, i am mexican and I came here about three years ago on a K-3 visa, and later I got my permanent resident card. In fact i was diagnosed in Mexico for scleroderma, because the reumathologist here would not see me without insurance, then finally we were able to ge the state insurance. I was working as a PCA but when i was diagnosed with the pulmonary hipertension the doctor told me I coulnd't work anymore. and the company i was working for, woulnd't let me go back to work whitout the doctor's permission. Im not a citizen and I don't think i qualify for disability benefits. Things are getting really tough, my husbad and I are very worried. My illness seems to be getting worse everyday, Im on oxigen 2lt, and at times i need 3lt. We live in Baton Rouge Louisiana. And here in town I only know another lady who has the same diagnosis as I do. She refered me to the doctor im seen now, and she assured me that doctor will help me. I sure hope so, aparently that doctor actually saved her lfe, that is why she trust him so much. I want to trust him too.  The greatest doctor is my father God, and he will make his will on me.happy new year everyone.--- On Wed, 12/31/08, Sher Bauman <bofus (AT) wbcable (DOT) net> wrote:From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: new and scaredTo: Breathe-Support Date: Wednesday, December 31, 2008, 11:03 AMHi Eileen... I'm sad to hear of your dx (diagnosis) but if you must deal with it then you are in the best place you can be. This is an extremely supportive board and there is always someone to respond to a question or talk to. Beth is our moderator and she is very good to reply.I sure understand you being scared and tired. We all have had to deal w/fear, for different reasons and tired goes w/the territory I think.Tell us your age, where you live and is the "we" you mention husband and kids?I know the market is awful for housing now.You may be able to apply for disability.. .I have no idea your circumstances but we will get acquainted as you post more.Go to the web page and click on Files where you will find lots of information as well.Take things one at a time, one day at a time...WelcomeMamaSher, age 70. IPF 3-06, OR.   NasturtiumsDon't fret about tomorrow, God is already there!  new and scaredHi My name is Eileen. I was diagnosed w IPF/UIP in May 2007. I have actually been doing very well till this Thanksgiving. I got the flu and my oxygen dropped. The doctor put me on 02 temporarily saying he thought I would go back up but I have not. Monday he told me I have to face the possibility my fibrosis has worsened and I will need to stay on 02. I happen to be off from work this week so I am trying to take it easy but I am scared. I am so tired. How am I going to keep working? If I don't work we will lose our house. Not a good market to have to sell now. I am just scared and need someone who knows what it is like to talk to.