Re: Hi all

[Guest guest]

Thanks Joyce. I have been missing you, too. How are you? I hope you are better. I have not made a list yet for Birmingham, but that is something I definitely will do this week. I have a questionnaire they sent me to fill out, too, and I have to do that, too. I hope you are okay. I thought that was a pretty big drop, too, from 30 mg to 20 mg, but that is what the pulmo told me to do, so that is what I did. So far okay, I guess. I am just feeling a lot more depressed than usual. It will pass, I guess. My daughter has decided she wants to leave her husband of 6 years and she has 3 sons, ages 9, 5, and 4. She is planning to tell him this weekend she doesn't love him any

more. He is going to be so heartbroken. He didn't even see it coming. She is my daughter and I love her, but I fear she is going to miss him when all is said and done. Maybe it is just a process she has to go through, and I will be behind her because she is my daughter and I love her. I can't decide for her, but I will be there to pick her up, if she falls. Not helping much with my mood having to deal with that, too, but doing the best I can. I hope you have been doing well. I am so glad to know that other people have had weight gain on prednisone and Imuran, too. I have always been kind of obsessed with my weight anyway and I am really not dealing with this very well. Helps a lot just to be able to talk about it. Thanks so much for listening!!

CaroCaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Re: Hi allTo: Breathe-Support Date: Friday, June 6, 2008, 9:48 PM

Caro,

Have been missing you. It is o.k. to wallow. It is o.k. to be nervous about the upcoming appointment. Get your list of questions ready. Be prepared and that will help you. Let us know what the Birmingham people say. Be careful going off the Pred. It can add to your pain and depression when stopped too soon. I am cutting down. 2.5 mgs a month....not 10-20. That is a killer drop.

May God be with you and I hope all your questions get answered in Birmingham.

Don't worry about the weight. It will come off. Just a fact of Pred.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Well have been away for a bit. Not having a good day today. Am > sinking more and more into depression I fear. Since starting > prednisone, I have now gained 15 pounds and still rising. No matter > what I do, the scales still go up. Have started pulmo rehab, > exercising more, eating healthy, still gaining weight. Just tapered >

the dose down from 30 mg to 20 mg on the first of June, so I am > REALLY hoping that will help with the weight. I can't wear any of my > summer clothes. Birmingham for me is a week from Monday, appointment > is Tuesday morning the 17th. I can't believe it is here already. I > am so nervous. I wish it was over. I am so tired all the time. > Today was just a BLAH day. I have done good just to make it through > the day. I so hate this disease. Having terrible constipation, > too. Have never had it this bad in my life until this year. I feel > like I am becoming laxative addicted and that scares me, too. Has > anyone else had this problem with prednisone and Imuran? I have > started on Cymbalta 60 mg for the neuropathic pain from my back and > the restless legs and she said it is supposed to help with the > depression, but I can't tell it. I have been on that since April,

> too. I do feel like it is helping with the neuropathic pain and > the restless legs, but I don't feel any help with the depression. I > feel like I am wallowing in a pity pot, because so many of you have > it so worse than me. My sats dropped again today at pulmo rehab but > not bad enough to be worried. She said we are moving up to level 4 > next week on the exercises next week so that will be more strain on > the body. I have bruises all over my legs from doing the workouts. > I can just bump something and my leg turns black and blue. I look > like somebody beat the crap out of me. My stomach is distended and I > look like I am 6 months pregnant, too. > > Ok, I guess that is enough Woe is me for today. Haven't meant to be > hiding out. I have still been reading posts everyday. I haven't > forgotten anyone, I have just been wallowing --> >

Caro>

[Guest guest]

Caro,

Careful when getting off Pred! It's OK to wallow...My dr's each time they put me on Prednisone

which I hate, they decrease it 5mg per week. All the best at your appointment, next week.

I know how you feel about the stomach being distended and the bruises...I Hope in time, the symptoms

will settle down.

Hugs Irene

PF 03/07 Raynaud's Disease 09/07

Crohn's Disease 03/95

Re: Hi all

Caro,

Have been missing you. It is o.k. to wallow. It is o.k. to be nervous about the upcoming appointment. Get your list of questions ready. Be prepared and that will help you. Let us know what the Birmingham people say. Be careful going off the Pred. It can add to your pain and depression when stopped too soon. I am cutting down. 2.5 mgs a month....not 10-20. That is a killer drop.

May God be with you and I hope all your questions get answered in Birmingham.

Don't worry about the weight. It will come off. Just a fact of Pred.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Well have been away for a bit. Not having a good day today. Am > sinking more and more into depression I fear. Since starting > prednisone, I have now gained 15 pounds and still rising. No matter > what I do, the scales still go up. Have started pulmo rehab, > exercising more, eating healthy, still gaining weight. Just tapered >

the dose down from 30 mg to 20 mg on the first of June, so I am > REALLY hoping that will help with the weight. I can't wear any of my > summer clothes. Birmingham for me is a week from Monday, appointment > is Tuesday morning the 17th. I can't believe it is here already. I > am so nervous. I wish it was over. I am so tired all the time. > Today was just a BLAH day. I have done good just to make it through > the day. I so hate this disease. Having terrible constipation, > too. Have never had it this bad in my life until this year. I feel > like I am becoming laxative addicted and that scares me, too. Has > anyone else had this problem with prednisone and Imuran? I have > started on Cymbalta 60 mg for the neuropathic pain from my back and > the restless legs and she said it is supposed to help with the > depression, but I can't tell it. I have been on that since April,

> too. I do feel like it is helping with the neuropathic pain and > the restless legs, but I don't feel any help with the depression. I > feel like I am wallowing in a pity pot, because so many of you have > it so worse than me. My sats dropped again today at pulmo rehab but > not bad enough to be worried. She said we are moving up to level 4 > next week on the exercises next week so that will be more strain on > the body. I have bruises all over my legs from doing the workouts. > I can just bump something and my leg turns black and blue. I look > like somebody beat the crap out of me. My stomach is distended and I > look like I am 6 months pregnant, too. > > Ok, I guess that is enough Woe is me for today. Haven't meant to be > hiding out. I have still been reading posts everyday. I haven't > forgotten anyone, I have just been wallowing --> >

Caro>

Ask a question on any topic and get answers from real people. Go to Yahoo! Answers.

[Guest guest]

,

What a relief!! I'm so happy it was good news. Congratulations!!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Hi all

The bone growth biopsy was today and it seems to be all good news. We won't actually have results for a couple of weeks but it looked like a tori and not a cancer growth plus it was a little smaller than before and cancer growths don't do that. My oral surgeon was practically jumping around he was so excited at what he found. And the pain is not terrible.The specimen has to be broken down by acid or something so they can test it and that takes time.SO I am winning the cancer bingo still - only 1 positive and 4 negative since then.It is all good! Thanks for all your prayers and support. S, Lubbock, TXNSIP w/PF 12/2006

[Guest guest]

,

What a relief!! I'm so happy it was good news. Congratulations!!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Hi all

The bone growth biopsy was today and it seems to be all good news. We won't actually have results for a couple of weeks but it looked like a tori and not a cancer growth plus it was a little smaller than before and cancer growths don't do that. My oral surgeon was practically jumping around he was so excited at what he found. And the pain is not terrible.The specimen has to be broken down by acid or something so they can test it and that takes time.SO I am winning the cancer bingo still - only 1 positive and 4 negative since then.It is all good! Thanks for all your prayers and support. S, Lubbock, TXNSIP w/PF 12/2006

[Guest guest]

S. I'm glad to see a post from you and hey, you could have at least said "goodbye"... . Now I'm teasing... a little bit. Don't drop off again without a little wave, ok?

I've had severe stomach pains--gastritis-endoscopy--meds--scan and now waiting on scan results. Won't go into all the details or the whole board will flee w/o a goodbye to me! Enough discussion about it has passed. lol.

So, are you feeling good now, no physical complaints going on? Do you think the NSIP/PF is gone?

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Hi all

I fell off the map for a while but now I am back. I went into a big denial phase. My lung capacity went up to 80% and I stopped needing oxygen. My lungs are stable. So I went out of the lung disease world for a while. Turns out we can run but we can't hide. My lungs are still good but I've had a URI I can't seem to get rid of. So I saw a weekend doc yesterday who gave me some levaquin and tussinex (now that is the stuff) and hopefully will get better. It sucks to have tonsillitis at 50!But the thing is he looked at my medical records with a fresh eye and announced that probably what is the root of all evil in my body is mixed connective tissue disease. And from what I read and feel I am pretty sure he's right. I will probably have the tests done at some point but not yet. I don't know why in particular I tuned back in tonight but was saddened to read 's post. Godspeed, .Missed you guys! Bruce, Leanne, Mama-Sher, Z, Babs, Joyce, -Beth, and all my peeps. I hope you have been well and happy. S, Lubbock, TXNSIP w/PF 12/2006

[Guest guest]

Hi Kim,

Happy birthday for last weekend. Are you the 12th too? Sorry I missed it. Yay, another cancererian on the board

I'm sorry to hear you had a bad turn. Unfortunately it can happen, and although your mum was in a different part of the store, at least she wasn't too far away. It might be worth finding out which shops do have wheelchair support so that you know for the future. Just for a confidence thing. You don't have to use it, but just knowing that it's available if you need it can be a help.

I know what you mean about not always being able to find the words to respond. I sometimes find I just don't know what to say. It doesn't mean I don't care, just that what I'm trying to say in my head just doesn't come out right when it's typed out.

Take care

Love Ze xx>> > Hey everybody, I had a alright birthday last weekend. Thanks to everyone> who wished me well. > > Today hit the nail in the head with showing myself how bad shape I'm in> My mom took me to Best Buy because both my parents wanted to see me out> of the house for a little while. I started out okay in there, browsing> the video games like I always do. I had a portable tank with me and my> rescue inhaler. My mom went to another part of the store. (At the time> we didn't know they had wheelchairs, and this BB is a decent sized one).> Anyway, I started to feel my enegry slump, started to get short of> breath, I started to feel hot and sweaty (I was alright when I first> entered the store..) & my legs felt like they were gonna buckle from> under me; so I got myself out of the way and I had to plop myself on the> floor and just sit there. Feeling pretty embarassed but I didn't feel> good one bit so I sat there catching my breath for about five minutes> and turned the dial up on my tank... By the time I stood up and got the> games I wanted to buy togheter at the check out I felt even worse a> manager came by with a wheel chair he saw how much trouble I was having.> So after I checked out and left my mom was able to wheel me to the car.> (At least we know next time they have a chair...now I'm assuming most> places have wheelchairs avaiable?). By the time I got home I had a> migraine -- now is gone I promptly fell asleep on the couch for a few> hours.> > I didn't think I could feel so horriable. This made me realize how> serious this disease is, even more. Friends/Family will have to> understand I won't be able to do what I used to...even walking around a> shopping centre. It's grasped on a little, my dad has been easier with> me on "chores" if he gives me any. I also realize work is far cry out, I> don't think I will see it for a long long long time.> > I see my lung doctor on Monday, I'm going to tell her what happened> today during my little adventure out. On the way home someone noticed my> mom's front tire had a nail in it so she has to get her tire> checked...hopefully I'll be able to keep the appointment. But I don't> really want to get in a car accident cause the tire blew on the> interstate on the way to the hospital either.> > I've been reading all the posts, I just am not sure how to respond to> most of them. But I am thinking of everybody everyday in my thoughts and> sending lots of love/hugs and lots of friendship!> > /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~> Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to> chemotherapy 06/2008 ~.>