So glad I've found you all!

[Guest guest]

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.