Diane

[Guest guest]

Diane,

I agree, never is a very long time, isn't it? When I was in the hospital back in 06 no one asked me if I wanted to be treated with steroids, they just started the iv and added the SoluMedrol. They were trying to save my life and thank God they were successful. I'm very happy to still be here.

Not everyone is faced with a life and death decision when it comes to steroids but it can come to that. Like you, if I have a choice of trying the prednisone or dying, I'll try the prednisone!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

So glad I've found you all!

Dear lovely people,My name is and I just turned 52. I live in Mansfield, TX and I'm a 6th grade teacher in my last three weeks of school. My story is long and I'm hoping one of you can give me some help and guidance. I am great at giving the same, and hope that I can reciprocate in the future.I've been reading hundreds of past posts for two days seeking answers I wasn't given in this miserable month since diagnosis. In Jan.2007, I had a major coughing spell and had a breathing treatment the night of my dad's visitation at the funeral home. Not having a regular doctor at the time, I went to one of those "doc-in-the box" places where I liked the doctor. Then, last summer, I had a horrible cough and fever twice and was diagnosed by the same doctor both times with bronchitis and put on antibiotics. She never would do a chest X-ray. Flash forward to Dec. '07 when the cough came back in

spades. I had also started losing weight. I went to another clinic and had X-rays, but no pneumonia. Repeat of this in early January. I did get a couple of asthma sprays, cough meds w/codiene, and nose spray, but coughed day and night. By March, I finally made an appointment with a "good" doctor. He also went the allergy route on the treatment, even though I said I'd had fever many times. I had lost 20 lbs. since November '07. By mid-March, I came in demanding that I needed help. He X-rayed me and said I had pneumonia (same DRY cough) More antibiotics, one horrible drug reaction to Cipro, and probably more damage done. Two weeks more and I went back for a follow-up. I said to him that I thought I had Lupus (my internet research) because I was having numb fingers, (Reynaud's, I now know)weight loss, and coughing. No, he said. Then...he did an X-ray, heard the crackles, came back in stricken looking.

He said I might be looking at an autoimmune disease and interstitial lung disease or some infiltrates. WHAT????? Can't anybody see this on X-rays?? He got me in for a sinus scan and set an appt. with a pulmonologist. The pulmonologist ran a RA panel and I tested high in the whole panel, but I only seem to have symtom's of Sjogren's. I had 84% pulmonary functioning. I then had a CT done and an asthma test(of course, negative). This doctor was the worst! He read the CT scan for the first time in my presence (had it two days) and didn't happen to see "severe pulmonary fibrosis" or just didn't care enough. No treatment plan was given, no information except lung scarring from autoimmune disease. He stood the whole time like he was in a hurry. He told me to see a rheumatologist as soon as possible. The next week when I saw her, the nurse read those words to us and I was shocked. I have been on prednisone

for three weeks and feel like I have been thrown out in the water by the medical profession, totally in charge of figuring out what to do physically and mentally. The pulmonologist has since left the location, cancelled all appointments, and in his new location has appointments in June. My PCP has sent all info to UT Southwestern in Dallas to get me on with a great doctor. It could be weeks. Meanwhile, I've had pain and anxiousness, and the need for information. I have been back to PCP, but he does not want to order a scan knowing how much I've been radiated. He told me to watch for signs of a blood clot. I guess I would go to the emergency room with extreme pain. I don't know about exercise, breathing exercises, food to eat, how to sleep at night to maximize breathing, or how to quit obsessing about dying in the next ten years. This has been like a new full-time job. I have friends and some family,

but feel like I'm on a downward spiral.If you've read to the end here, bless your caring heart! I am an English teacher on steroids, so I wrote a lot! Thanks so much for any advice, prayers, direction you can throw my way.

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