Re: Re: Elisa

[Guest guest]

Thanks May! I know and I'm extremely grateful for my baby sister's intervention that day. I was so sick but I couldn't see the forest for the trees. I kept telling myself I just needed rest and I'd be ok. Oh denial is a very powerful thing. It very nearly killed me.

is my guardian angel. We've always been close but especially so now!

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. > > >

[Guest guest]

Beth, It sounds like you have made huge strides from that Memorial Day. Your denial story is something I can relate to as well. I know I will continue to get a grip on the enormity of this thing, but I plan to have fun and laugh every chance I get. I can't lose myself in this illness. I look forward to getting to know you better, as well as the others that are here. Thank you for reaching out to me today! Beth wrote: Thanks May! I know and I'm extremely grateful for my baby sister's intervention that day. I was so sick but I couldn't see the forest for the trees. I kept telling myself I just needed rest and I'd be ok. Oh denial is a very powerful thing. It very nearly killed me. is my guardian angel. We've always been close but especially so now! 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. > > >