Re: IChecking in with tons of questions

[Guest guest]

Thank you Barbara. I need all I can get. I really appreciate all the support from you guys!! Don't know what I would do without you. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Sunday, March 8, 2009 12:21:47 PMSubject: Re: Re: IChecking in with tons of questions

Caro: I am so sorry that you are going thru such an avalanche of bad stuff. I can't imagine how you feel. I will keep you in my prayers.

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 12:18:21 PMSubject: Re: Re: IChecking in with tons of questions

Thanks Margaret. I guess I made it through the night. Didn't sleep much at all. Ever wake up in the morning and wishing the night before was just a dream? Well, that is how I woke up this morning. I was on the phone with my mom until nearly 1 a.m. before I finally fell asleep on the sofa sitting up with the TV on. Woke up and it was 7 a.m. and I went to bed and just woke up about 30 minutes ago. Feel totally like crap. I was planning to do some house cleaning today but it may just have to wait. I am just not in the mood. It is supposed to storm here today, also. I am waiting on a call from my oldest son, as my youngest who is the one in prison is going to have to call his fiancee and give her the news and use my oldest' phone becuase that is the only number he can call. Am worried about my oldest because he has to be the one there when he gives her the

news. Still not going to be a good day. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 6:24:27 AMSubject: Re: Re: IChecking in with tons of questions

Oh Caro, if anyone ever needed xanex, you could certainly use some now. Does one of your other local doctors have an on call number so that you could reach someone who could give you even six tablets to get you through Sunday and dealing with your other needs on Monday. You are certainly not going to become addicted or overdose on that amount. God love you, you are all in my thoughts and prayers.

Margaret 62 Anchorage, Alaska

Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08

I enjoy traveling, photography, gardening, sewing, home decorating,

playing with my toys & classical music

aka Grammie Goose

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 10:59:02 PMSubject: Re: Re: IChecking in with tons of questions

Hey, I can deal with the traffic. Lived there for 15 years. On another bad note , though. Remember when I told you all my youngest son was in jail for burglary? Well, my oldest son called tonight and he said Brent (my youngest son) called him tonight and told him he got his blood tests back on Wednesday (I guess they do that when you are in county jail), and he is HIV positiive. He was tested 2 years ago when he got arrested and he was HIV negative, so he has "nailed it down to 2 people he has been with the last 2 years." I know that HIV positive does not necessarily mean that you have full blown AIDS but this on top of the cancer findings I had myself this week is just too much!! My mom says that God won't put more on you than you can handle, but honestly sometimes, I find it really hard to believe. I am

hopefully going to get to talk to him next week and am going to tell him that Majic has been HIV positive for years and is still alive and we will get through this together as a family and I love him no matter what and that is what counts. I am so stressed out I feel like I can barely breathe. I don't care about me, but when it is my child, I am worried sick. That is all that matters to me. He was going to be sent to the coast for a boot camp, but now that they know he is HIV positive, they are going to send him to Parchman ( the worst jail in the state), so he can get medication and he will not be in general population, so at least I am glad he will be getting medication. I am hopefully going to get to talk to him next Sunday (not tomorrow) and tell him that I love him no matter what and we will get through this together as a family and that is all that matters. You

guys, please pray for me. I need it so bad. I am at my wit's end.

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 12:05:03 AMSubject: Re: IChecking in with tons of questions

Hi Caro - this all sucks. So they think the monster is there but they don't know where? Double suck. There are some really good ob/gym docs in . That is where both my daughters were born. Good luck with them. And the traffic. S, Lubbock, TXNSIP w/PF 12/2006 et al>> Hi all,> > Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I

get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in July. Then he tells me "remember when I told you that because you are so young, I thought there may be an> underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of

breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1 antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him> believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow. " I called the gyne when I got back and

the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have> to worry about it), then they are going to bring me back and scan me from head to toe to try and find

where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from> your family doctor. I

almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!> > Wow what a week.> > I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!! vent Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09> Mississippi>

[Guest guest]

Thank you Barbara. I need all I can get. I really appreciate all the support from you guys!! Don't know what I would do without you. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Sunday, March 8, 2009 12:21:47 PMSubject: Re: Re: IChecking in with tons of questions

Caro: I am so sorry that you are going thru such an avalanche of bad stuff. I can't imagine how you feel. I will keep you in my prayers.

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 12:18:21 PMSubject: Re: Re: IChecking in with tons of questions

Thanks Margaret. I guess I made it through the night. Didn't sleep much at all. Ever wake up in the morning and wishing the night before was just a dream? Well, that is how I woke up this morning. I was on the phone with my mom until nearly 1 a.m. before I finally fell asleep on the sofa sitting up with the TV on. Woke up and it was 7 a.m. and I went to bed and just woke up about 30 minutes ago. Feel totally like crap. I was planning to do some house cleaning today but it may just have to wait. I am just not in the mood. It is supposed to storm here today, also. I am waiting on a call from my oldest son, as my youngest who is the one in prison is going to have to call his fiancee and give her the news and use my oldest' phone becuase that is the only number he can call. Am worried about my oldest because he has to be the one there when he gives her the

news. Still not going to be a good day. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 6:24:27 AMSubject: Re: Re: IChecking in with tons of questions

Oh Caro, if anyone ever needed xanex, you could certainly use some now. Does one of your other local doctors have an on call number so that you could reach someone who could give you even six tablets to get you through Sunday and dealing with your other needs on Monday. You are certainly not going to become addicted or overdose on that amount. God love you, you are all in my thoughts and prayers.

Margaret 62 Anchorage, Alaska

Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08

I enjoy traveling, photography, gardening, sewing, home decorating,

playing with my toys & classical music

aka Grammie Goose

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 10:59:02 PMSubject: Re: Re: IChecking in with tons of questions

Hey, I can deal with the traffic. Lived there for 15 years. On another bad note , though. Remember when I told you all my youngest son was in jail for burglary? Well, my oldest son called tonight and he said Brent (my youngest son) called him tonight and told him he got his blood tests back on Wednesday (I guess they do that when you are in county jail), and he is HIV positiive. He was tested 2 years ago when he got arrested and he was HIV negative, so he has "nailed it down to 2 people he has been with the last 2 years." I know that HIV positive does not necessarily mean that you have full blown AIDS but this on top of the cancer findings I had myself this week is just too much!! My mom says that God won't put more on you than you can handle, but honestly sometimes, I find it really hard to believe. I am

hopefully going to get to talk to him next week and am going to tell him that Majic has been HIV positive for years and is still alive and we will get through this together as a family and I love him no matter what and that is what counts. I am so stressed out I feel like I can barely breathe. I don't care about me, but when it is my child, I am worried sick. That is all that matters to me. He was going to be sent to the coast for a boot camp, but now that they know he is HIV positive, they are going to send him to Parchman ( the worst jail in the state), so he can get medication and he will not be in general population, so at least I am glad he will be getting medication. I am hopefully going to get to talk to him next Sunday (not tomorrow) and tell him that I love him no matter what and we will get through this together as a family and that is all that matters. You

guys, please pray for me. I need it so bad. I am at my wit's end.

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 12:05:03 AMSubject: Re: IChecking in with tons of questions

Hi Caro - this all sucks. So they think the monster is there but they don't know where? Double suck. There are some really good ob/gym docs in . That is where both my daughters were born. Good luck with them. And the traffic. S, Lubbock, TXNSIP w/PF 12/2006 et al>> Hi all,> > Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I

get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in July. Then he tells me "remember when I told you that because you are so young, I thought there may be an> underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of

breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1 antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him> believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow. " I called the gyne when I got back and

the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have> to worry about it), then they are going to bring me back and scan me from head to toe to try and find

where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from> your family doctor. I

almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!> > Wow what a week.> > I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!! vent Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09> Mississippi>

[Guest guest]

Thanks Sher!! I was wanting to write DAMNIT, DAMNIT, DAMNIT but didn't. How did you know exactly what I was thinkin? This disease sucks and now this with my son is just another mountain to climb. I feel like there is avalanche at the top that is going to roll on top of me and squish me or something!!

Hey, I am still breathing today, though, so may be today will be a better day. I am surely hoping and praying so. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Sunday, March 8, 2009 11:59:08 AMSubject: Re: IChecking in with tons of questions

OMG Caro! what can I say? DAMNIT, DAMNIT DAMNIT. Gee, I haven't hauled that word out for a long while.

I'm so so sorry to read this post and know what you're going through.

It's never to late change a dr. Can you ask ANOTHER dr to Rx Xanax or something else??

I don't know how far you are from Birmingham.. .can you see dr deA there again?

I know many here seem to have the poly/derma double whammy.

You vent all you want Caro...and then you go out and get 'em. I'll surely be .

Are your support people close around you?

A big warm hug to you.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

[Guest guest]

Thanks Sher!! I was wanting to write DAMNIT, DAMNIT, DAMNIT but didn't. How did you know exactly what I was thinkin? This disease sucks and now this with my son is just another mountain to climb. I feel like there is avalanche at the top that is going to roll on top of me and squish me or something!!

Hey, I am still breathing today, though, so may be today will be a better day. I am surely hoping and praying so. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Sunday, March 8, 2009 11:59:08 AMSubject: Re: IChecking in with tons of questions

OMG Caro! what can I say? DAMNIT, DAMNIT DAMNIT. Gee, I haven't hauled that word out for a long while.

I'm so so sorry to read this post and know what you're going through.

It's never to late change a dr. Can you ask ANOTHER dr to Rx Xanax or something else??

I don't know how far you are from Birmingham.. .can you see dr deA there again?

I know many here seem to have the poly/derma double whammy.

You vent all you want Caro...and then you go out and get 'em. I'll surely be .

Are your support people close around you?

A big warm hug to you.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

[Guest guest]

Caro...you have been in my thoughts since I read your post yesterday. I feel so helpless. I want to do something to help and there is nothing I can do...I guess not much you can do either but wait...

You may remember, DAMNIT! is what I say when I don't know what else to say.

I have a son who has AIDS. He has lived many years with it. He's been at death's door 3 different times but seems to pull through. If Brent gets on the cocktail and/or other meds they seem to be very effective. Let's ask God not to allow this disease to spread...

I'm sure you have a lot of phone calls on your list today .

Just take one thing at time and work through that and then take the next thing and do that...pretty soon you'll have done what you can with all of it!

Have you thought about contacting the Office Manager at the office where "the lady" was so rude? That is surely not professional or even compassionate.

Oh dear, lets hope SHE is not the OM...

Hang on Caro.

Love,

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1 antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

[Guest guest]

I don't think she is the OM. She is a nurse. I haven't talked to anyone else over there yet. No phone call today yet either about having my appointment moved up. I was really hoping to hear something today. I guess I will give it another few days and then I will call my doctor in Birmingham back if I don't hear anything by Thursday. I tried to think positive about Brent, too, as he has not had any symptoms at all and only found out through a routine blood test. He was tested 2 years ago and it was negative. I told my oldest son to tell him he should ask them to repeat the test just to be sure. They can make mistakes, ya know? If they didn't make a mistake then we will deal with it. At least the prison they are sending him to he won't be put in the general population (so that is a good thing) and they said they will be giving him medication while he is

there. I went on SS Disability site today and see that HIV infection is on the list, so hopefully when he gets out we can go that route to continue his meds as I know they are very expensive.

I am having trouble this week buying my own meds. Have run out of 3 of them and am going to have to wait until Friday to get them. I just called the pharmacy and she said they all totalled $97 with my insurance, so I will do the best I can to get through the week. Man, this year is not starting out well at all.

Thanks so much for listening, you guys!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Monday, March 9, 2009 11:37:18 AMSubject: Re: IChecking in with tons of questions

Caro...you have been in my thoughts since I read your post yesterday. I feel so helpless. I want to do something to help and there is nothing I can do...I guess not much you can do either but wait...

You may remember, DAMNIT! is what I say when I don't know what else to say.

I have a son who has AIDS. He has lived many years with it. He's been at death's door 3 different times but seems to pull through. If Brent gets on the cocktail and/or other meds they seem to be very effective. Let's ask God not to allow this disease to spread...

I'm sure you have a lot of phone calls on your list today .

Just take one thing at time and work through that and then take the next thing and do that...pretty soon you'll have done what you can with all of it!

Have you thought about contacting the Office Manager at the office where "the lady" was so rude? That is surely not professional or even compassionate.

Oh dear, lets hope SHE is not the OM...

Hang on Caro.

Love,

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

[Guest guest]

I don't think she is the OM. She is a nurse. I haven't talked to anyone else over there yet. No phone call today yet either about having my appointment moved up. I was really hoping to hear something today. I guess I will give it another few days and then I will call my doctor in Birmingham back if I don't hear anything by Thursday. I tried to think positive about Brent, too, as he has not had any symptoms at all and only found out through a routine blood test. He was tested 2 years ago and it was negative. I told my oldest son to tell him he should ask them to repeat the test just to be sure. They can make mistakes, ya know? If they didn't make a mistake then we will deal with it. At least the prison they are sending him to he won't be put in the general population (so that is a good thing) and they said they will be giving him medication while he is

there. I went on SS Disability site today and see that HIV infection is on the list, so hopefully when he gets out we can go that route to continue his meds as I know they are very expensive.

I am having trouble this week buying my own meds. Have run out of 3 of them and am going to have to wait until Friday to get them. I just called the pharmacy and she said they all totalled $97 with my insurance, so I will do the best I can to get through the week. Man, this year is not starting out well at all.

Thanks so much for listening, you guys!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Monday, March 9, 2009 11:37:18 AMSubject: Re: IChecking in with tons of questions

Caro...you have been in my thoughts since I read your post yesterday. I feel so helpless. I want to do something to help and there is nothing I can do...I guess not much you can do either but wait...

You may remember, DAMNIT! is what I say when I don't know what else to say.

I have a son who has AIDS. He has lived many years with it. He's been at death's door 3 different times but seems to pull through. If Brent gets on the cocktail and/or other meds they seem to be very effective. Let's ask God not to allow this disease to spread...

I'm sure you have a lot of phone calls on your list today .

Just take one thing at time and work through that and then take the next thing and do that...pretty soon you'll have done what you can with all of it!

Have you thought about contacting the Office Manager at the office where "the lady" was so rude? That is surely not professional or even compassionate.

Oh dear, lets hope SHE is not the OM...

Hang on Caro.

Love,

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

[Guest guest]

Caro... I know, some days just seem so dark don't they. No answers at all.

We'll keep and something will turn around... keep the faith....

Hugs.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1 antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

[Guest guest]

Sher

i don't remember if i ever acknowledged your issues with you son, so sorry to hear about his illness

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: IChecking in with tons of questionsTo: Breathe-Support Date: Monday, March 9, 2009, 12:37 PM

Caro...you have been in my thoughts since I read your post yesterday. I feel so helpless. I want to do something to help and there is nothing I can do...I guess not much you can do either but wait...

You may remember, DAMNIT! is what I say when I don't know what else to say.

I have a son who has AIDS. He has lived many years with it. He's been at death's door 3 different times but seems to pull through. If Brent gets on the cocktail and/or other meds they seem to be very effective. Let's ask God not to allow this disease to spread...

I'm sure you have a lot of phone calls on your list today .

Just take one thing at time and work through that and then take the next thing and do that...pretty soon you'll have done what you can with all of it!

Have you thought about contacting the Office Manager at the office where "the lady" was so rude? That is surely not professional or even compassionate.

Oh dear, lets hope SHE is not the OM...

Hang on Caro.

Love,

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

[Guest guest]

Sher

i don't remember if i ever acknowledged your issues with you son, so sorry to hear about his illness

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: IChecking in with tons of questionsTo: Breathe-Support Date: Monday, March 9, 2009, 12:37 PM

Caro...you have been in my thoughts since I read your post yesterday. I feel so helpless. I want to do something to help and there is nothing I can do...I guess not much you can do either but wait...

You may remember, DAMNIT! is what I say when I don't know what else to say.

I have a son who has AIDS. He has lived many years with it. He's been at death's door 3 different times but seems to pull through. If Brent gets on the cocktail and/or other meds they seem to be very effective. Let's ask God not to allow this disease to spread...

I'm sure you have a lot of phone calls on your list today .

Just take one thing at time and work through that and then take the next thing and do that...pretty soon you'll have done what you can with all of it!

Have you thought about contacting the Office Manager at the office where "the lady" was so rude? That is surely not professional or even compassionate.

Oh dear, lets hope SHE is not the OM...

Hang on Caro.

Love,

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

[Guest guest]

Caro

venting is important

hope things work out for you with the various doctors

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: IChecking in with tons of questionsTo: Breathe-Support Date: Saturday, March 7, 2009, 8:32 PM

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

[Guest guest]

Caro

venting is important

hope things work out for you with the various doctors

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: IChecking in with tons of questionsTo: Breathe-Support Date: Saturday, March 7, 2009, 8:32 PM

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

[Guest guest]

Caro

you and your son are in my thoughts

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Re: IChecking in with tons of questionsTo: Breathe-Support Date: Sunday, March 8, 2009, 3:59 AM

Hey, I can deal with the traffic. Lived there for 15 years. On another bad note , though. Remember when I told you all my youngest son was in jail for burglary? Well, my oldest son called tonight and he said Brent (my youngest son) called him tonight and told him he got his blood tests back on Wednesday (I guess they do that when you are in county jail), and he is HIV positiive. He was tested 2 years ago when he got arrested and he was HIV negative, so he has "nailed it down to 2 people he has been with the last 2 years." I know that HIV positive does not necessarily mean that you have full blown AIDS but this on top of the cancer findings I had myself this week is just too much!! My mom says that God won't put more on you than you can handle, but honestly sometimes, I find it really hard to believe. I am

hopefully going to get to talk to him next week and am going to tell him that Majic has been HIV positive for years and is still alive and we will get through this together as a family and I love him no matter what and that is what counts. I am so stressed out I feel like I can barely breathe. I don't care about me, but when it is my child, I am worried sick. That is all that matters to me. He was going to be sent to the coast for a boot camp, but now that they know he is HIV positive, they are going to send him to Parchman ( the worst jail in the state), so he can get medication and he will not be in general population, so at least I am glad he will be getting medication. I am hopefully going to get to talk to him next Sunday (not tomorrow) and tell him that I love him no matter what and we will get through this together as a family and that is all that matters. You

guys, please pray for me. I need it so bad. I am at my wit's end.

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 12:05:03 AMSubject: Re: IChecking in with tons of questions

Hi Caro - this all sucks. So they think the monster is there but they don't know where? Double suck. There are some really good ob/gym docs in . That is where both my daughters were born. Good luck with them. And the traffic. S, Lubbock, TXNSIP w/PF 12/2006 et al>> Hi all,> > Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid

July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in July. Then he tells me "remember when I told you that because you are so young, I thought there may be an> underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/

dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1 antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him> believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow. " I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE

TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have> to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently

waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from> your family doctor. I almost laughed!! I am like, lady, I

take 15 medications a day!! How much more addicted can I get!!> > Wow what a week.> > I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!! vent Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09> Mississippi>

[Guest guest]

Caro

you and your son are in my thoughts

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Re: IChecking in with tons of questionsTo: Breathe-Support Date: Sunday, March 8, 2009, 3:59 AM

Hey, I can deal with the traffic. Lived there for 15 years. On another bad note , though. Remember when I told you all my youngest son was in jail for burglary? Well, my oldest son called tonight and he said Brent (my youngest son) called him tonight and told him he got his blood tests back on Wednesday (I guess they do that when you are in county jail), and he is HIV positiive. He was tested 2 years ago when he got arrested and he was HIV negative, so he has "nailed it down to 2 people he has been with the last 2 years." I know that HIV positive does not necessarily mean that you have full blown AIDS but this on top of the cancer findings I had myself this week is just too much!! My mom says that God won't put more on you than you can handle, but honestly sometimes, I find it really hard to believe. I am

hopefully going to get to talk to him next week and am going to tell him that Majic has been HIV positive for years and is still alive and we will get through this together as a family and I love him no matter what and that is what counts. I am so stressed out I feel like I can barely breathe. I don't care about me, but when it is my child, I am worried sick. That is all that matters to me. He was going to be sent to the coast for a boot camp, but now that they know he is HIV positive, they are going to send him to Parchman ( the worst jail in the state), so he can get medication and he will not be in general population, so at least I am glad he will be getting medication. I am hopefully going to get to talk to him next Sunday (not tomorrow) and tell him that I love him no matter what and we will get through this together as a family and that is all that matters. You

guys, please pray for me. I need it so bad. I am at my wit's end.

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 12:05:03 AMSubject: Re: IChecking in with tons of questions

Hi Caro - this all sucks. So they think the monster is there but they don't know where? Double suck. There are some really good ob/gym docs in . That is where both my daughters were born. Good luck with them. And the traffic. S, Lubbock, TXNSIP w/PF 12/2006 et al>> Hi all,> > Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid

July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in July. Then he tells me "remember when I told you that because you are so young, I thought there may be an> underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/

dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1 antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him> believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow. " I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE

TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have> to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently

waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from> your family doctor. I almost laughed!! I am like, lady, I

take 15 medications a day!! How much more addicted can I get!!> > Wow what a week.> > I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!! vent Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09> Mississippi>

[Guest guest]

Thanks Pink. I really appreciate that. I am so worried about him I can barely stand it. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Monday, March 9, 2009 8:00:05 PMSubject: Re: Re: IChecking in with tons of questions

Caro

you and your son are in my thoughts

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund. org

From: Carolyn Wade <carowade4444@ yahoo.com>Subject: Re: Re: IChecking in with tons of questionsTo: Breathe-Support@ yahoogroups. comDate: Sunday, March 8, 2009, 3:59 AM

Hey, I can deal with the traffic. Lived there for 15 years. On another bad note , though. Remember when I told you all my youngest son was in jail for burglary? Well, my oldest son called tonight and he said Brent (my youngest son) called him tonight and told him he got his blood tests back on Wednesday (I guess they do that when you are in county jail), and he is HIV positiive. He was tested 2 years ago when he got arrested and he was HIV negative, so he has "nailed it down to 2 people he has been with the last 2 years." I know that HIV positive does not necessarily mean that you have full blown AIDS but this on top of the cancer findings I had myself this week is just too much!! My mom says that God won't put more on you than you can handle, but honestly sometimes, I find it really hard to believe. I am

hopefully going to get to talk to him next week and am going to tell him that Majic has been HIV positive for years and is still alive and we will get through this together as a family and I love him no matter what and that is what counts. I am so stressed out I feel like I can barely breathe. I don't care about me, but when it is my child, I am worried sick. That is all that matters to me. He was going to be sent to the coast for a boot camp, but now that they know he is HIV positive, they are going to send him to Parchman ( the worst jail in the state), so he can get medication and he will not be in general population, so at least I am glad he will be getting medication. I am hopefully going to get to talk to him next Sunday (not tomorrow) and tell him that I love him no matter what and we will get through this together as a family and that is all that matters. You

guys, please pray for me. I need it so bad. I am at my wit's end.

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 12:05:03 AMSubject: Re: IChecking in with tons of questions

Hi Caro - this all sucks. So they think the monster is there but they don't know where? Double suck. There are some really good ob/gym docs in . That is where both my daughters were born. Good luck with them. And the traffic. S, Lubbock, TXNSIP w/PF 12/2006 et al>> Hi all,> > Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I

get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in July. Then he tells me "remember when I told you that because you are so young, I thought there may be an> underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of

breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1 antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him> believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow. " I called the gyne when I got back and

the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have> to worry about it), then they are going to bring me back and scan me from head to toe to try and find

where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from> your family doctor. I

almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!> > Wow what a week.> > I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!! vent Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09> Mississippi>

[Guest guest]

Thanks Pink. I really appreciate that. I am so worried about him I can barely stand it. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Monday, March 9, 2009 8:00:05 PMSubject: Re: Re: IChecking in with tons of questions

Caro

you and your son are in my thoughts

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund. org

From: Carolyn Wade <carowade4444@ yahoo.com>Subject: Re: Re: IChecking in with tons of questionsTo: Breathe-Support@ yahoogroups. comDate: Sunday, March 8, 2009, 3:59 AM

Hey, I can deal with the traffic. Lived there for 15 years. On another bad note , though. Remember when I told you all my youngest son was in jail for burglary? Well, my oldest son called tonight and he said Brent (my youngest son) called him tonight and told him he got his blood tests back on Wednesday (I guess they do that when you are in county jail), and he is HIV positiive. He was tested 2 years ago when he got arrested and he was HIV negative, so he has "nailed it down to 2 people he has been with the last 2 years." I know that HIV positive does not necessarily mean that you have full blown AIDS but this on top of the cancer findings I had myself this week is just too much!! My mom says that God won't put more on you than you can handle, but honestly sometimes, I find it really hard to believe. I am

hopefully going to get to talk to him next week and am going to tell him that Majic has been HIV positive for years and is still alive and we will get through this together as a family and I love him no matter what and that is what counts. I am so stressed out I feel like I can barely breathe. I don't care about me, but when it is my child, I am worried sick. That is all that matters to me. He was going to be sent to the coast for a boot camp, but now that they know he is HIV positive, they are going to send him to Parchman ( the worst jail in the state), so he can get medication and he will not be in general population, so at least I am glad he will be getting medication. I am hopefully going to get to talk to him next Sunday (not tomorrow) and tell him that I love him no matter what and we will get through this together as a family and that is all that matters. You

guys, please pray for me. I need it so bad. I am at my wit's end.

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 12:05:03 AMSubject: Re: IChecking in with tons of questions

Hi Caro - this all sucks. So they think the monster is there but they don't know where? Double suck. There are some really good ob/gym docs in . That is where both my daughters were born. Good luck with them. And the traffic. S, Lubbock, TXNSIP w/PF 12/2006 et al>> Hi all,> > Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I

get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in July. Then he tells me "remember when I told you that because you are so young, I thought there may be an> underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of

breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1 antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him> believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow. " I called the gyne when I got back and

the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have> to worry about it), then they are going to bring me back and scan me from head to toe to try and find

where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from> your family doctor. I

almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!> > Wow what a week.> > I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!! vent Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09> Mississippi>

[Guest guest]

Thanks Pink. I really appreciate that. I am so worried about him I can barely stand it. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Monday, March 9, 2009 8:00:05 PMSubject: Re: Re: IChecking in with tons of questions

Caro

you and your son are in my thoughts

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund. org

From: Carolyn Wade <carowade4444@ yahoo.com>Subject: Re: Re: IChecking in with tons of questionsTo: Breathe-Support@ yahoogroups. comDate: Sunday, March 8, 2009, 3:59 AM

Hey, I can deal with the traffic. Lived there for 15 years. On another bad note , though. Remember when I told you all my youngest son was in jail for burglary? Well, my oldest son called tonight and he said Brent (my youngest son) called him tonight and told him he got his blood tests back on Wednesday (I guess they do that when you are in county jail), and he is HIV positiive. He was tested 2 years ago when he got arrested and he was HIV negative, so he has "nailed it down to 2 people he has been with the last 2 years." I know that HIV positive does not necessarily mean that you have full blown AIDS but this on top of the cancer findings I had myself this week is just too much!! My mom says that God won't put more on you than you can handle, but honestly sometimes, I find it really hard to believe. I am

hopefully going to get to talk to him next week and am going to tell him that Majic has been HIV positive for years and is still alive and we will get through this together as a family and I love him no matter what and that is what counts. I am so stressed out I feel like I can barely breathe. I don't care about me, but when it is my child, I am worried sick. That is all that matters to me. He was going to be sent to the coast for a boot camp, but now that they know he is HIV positive, they are going to send him to Parchman ( the worst jail in the state), so he can get medication and he will not be in general population, so at least I am glad he will be getting medication. I am hopefully going to get to talk to him next Sunday (not tomorrow) and tell him that I love him no matter what and we will get through this together as a family and that is all that matters. You

guys, please pray for me. I need it so bad. I am at my wit's end.

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 12:05:03 AMSubject: Re: IChecking in with tons of questions

Hi Caro - this all sucks. So they think the monster is there but they don't know where? Double suck. There are some really good ob/gym docs in . That is where both my daughters were born. Good luck with them. And the traffic. S, Lubbock, TXNSIP w/PF 12/2006 et al>> Hi all,> > Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I

get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in July. Then he tells me "remember when I told you that because you are so young, I thought there may be an> underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of

breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1 antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him> believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow. " I called the gyne when I got back and

the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have> to worry about it), then they are going to bring me back and scan me from head to toe to try and find

where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from> your family doctor. I

almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!> > Wow what a week.> > I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!! vent Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09> Mississippi>