Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Zena, Consider yourself hugged!!!! I'm glad that you're still around and still reading even if you don't feel like posting. You use the board in whatever way best suits you at any given time. Making an informed decision on transplant is one of the most important decisions you'll ever have to make. It's overwhelming and there's so much information to sort out not to even begin to mention the emotional piece of it. Just know that we're here when you want and we're on your side completely and totally. Wish I could help you move (alot of help I'd be dragging my oxygen tank behind me LOL) Give Lili a hug from me! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Ze's group hug Hi All I haven't been around a lot, but I have been trying to keep up with the posts. There's a lot of newbies here, so I will say a group hello to you all, but am sorry that you have had to find us. I'm 38, mother of a 5 y/o and living in England. I have dermatomyositis, anticardio lipin/antiphospho lipids, pulmonary fibrosis (probably NSIP) Bronchiatisis, pulmonary hypertension and am desperately trying to lose weight so that I am ready for a transplant. I need to lose at least 42lbs before they'll consider me. It's very hard work as I am still on steroids. I've been away because I've been trying to deal with my head. It isn't doing me any favours at the moment and I just want it all to go away (not my head I'm quite attached to that lol). I know I don't have a date stamp on me, but I've still had to come to terms with the reality of my prognosis in my docs opinion. This is information I need to make an informed decision on transplant. It's not great, but I have proved the docs wrong in the past, I'll just have to do it again. On top of everything I'm having to move house soon, which although will be a positive thing in the long run, it's quite daunting in the short term, we'll probably be getting a smaller place than I'm in now which will be easier for me to look after, but moving itself is going to be difficult for me. We will have plenty of help, but I'm not capable of sitting back and watching others do everything. I may have to go away while they do it all for me. I want to say a massive thanks to May and Peggy for letting me rant off site and start to sort my head out. Where's ? I've not seen a post from her for a while. Sending much love and strength and great big skwishy (((((hugs))) )) to everyone who needs them Love Ze xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Z, One thing I failed to tell you. prednisone is a BIG mood changer. It can put you in a big ol' funk.Are you on anti-depressant ? Oh I just hate that feeling. BUT Love YOU. Kisses to Lilly. Peggy, ipf 6/04 Florida  ♡Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. Hi AllI haven't been around a lot, but I have been trying to keep up with the posts.There's a lot of newbies here, so I will say a group hello to you all, but am sorry that you have had to find us. I'm 38, mother of a 5 y/o and living in England.  I have dermatomyositis, anticardio lipin/antiphospho lipids, pulmonary fibrosis (probably NSIP) Bronchiatisis, pulmonary hypertension and am desperately trying to lose weight so that I am ready for a transplant. I need to lose at least 42lbs before they'll consider me. It's very hard work as I am still on steroids.I've been away because I've been trying to deal with my head. It isn't doing me any favours at the moment and I just want it all to go away (not my head I'm quite attached to that lol). I know I don't have a date stamp on me, but I've still had to come to terms with the reality of my prognosis in my docs opinion. This is information I need to make an informed decision on transplant. It's not great, but I have proved the docs wrong in the past, I'll just have to do it again. On top of everything I'm having to move house soon, which although will be a positive thing in the long run, it's quite daunting in the short term, we'll probably be getting a smaller place than I'm in now which will be easier for me to look after, but moving itself is going to be difficult for me. We will have plenty of help, but I'm not capable of sitting back and watching others do everything. I may have to go away while they do it all for me.I want to say a massive thanks to May and Peggy for letting me rant off site and start to sort my head out.Where's ? I've not seen a post from her for a while. Sending much love and strength and great big skwishy (((((hugs))))) to everyone who needs themLove Ze xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Ze....I fret over you and these decisions that face you. Of course the decisions are all about Lili in the long run and I know that too. Uggggg. Moving. Yes it is a huge task. I think you have a good idea to just leave and let others do it for you. I'm just like you are and I'll have to do the same whenever we can finally find a DOWNSTAIRS apt. (We've been looking but don't want to live in a family unit with lots of kids and can't afford market rent. Have to have a subsidy so our choices come few and far between.) is with family, with a niece, Casey who is in very serious condition in the hospital. I'm sorry I can't remember the name of what happened to her. It is life threatening....someone else jump in here and tell Ze what mama forgets! Hugs to you too and I know God will help you make your decisions. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Ze's group hug Hi All I haven't been around a lot, but I have been trying to keep up with the posts. There's a lot of newbies here, so I will say a group hello to you all, but am sorry that you have had to find us. I'm 38, mother of a 5 y/o and living in England. I have dermatomyositis, anticardio lipin/antiphospho lipids, pulmonary fibrosis (probably NSIP) Bronchiatisis, pulmonary hypertension and am desperately trying to lose weight so that I am ready for a transplant. I need to lose at least 42lbs before they'll consider me. It's very hard work as I am still on steroids. I've been away because I've been trying to deal with my head. It isn't doing me any favours at the moment and I just want it all to go away (not my head I'm quite attached to that lol). I know I don't have a date stamp on me, but I've still had to come to terms with the reality of my prognosis in my docs opinion. This is information I need to make an informed decision on transplant. It's not great, but I have proved the docs wrong in the past, I'll just have to do it again. On top of everything I'm having to move house soon, which although will be a positive thing in the long run, it's quite daunting in the short term, we'll probably be getting a smaller place than I'm in now which will be easier for me to look after, but moving itself is going to be difficult for me. We will have plenty of help, but I'm not capable of sitting back and watching others do everything. I may have to go away while they do it all for me. I want to say a massive thanks to May and Peggy for letting me rant off site and start to sort my head out. Where's ? I've not seen a post from her for a while. Sending much love and strength and great big skwishy (((((hugs))))) to everyone who needs them Love Ze xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 We have council housing here, I believe your equivalent is project housing? Anyway, the property is government owned and the rents are comparatively cheap, but you have to give them all the info to get listed and they will decided your priority. Thing is on the medical form they've only given me about an inch of space where it asks me to list my problems and how it affects my everyday life, and they've only given enough room for one consultant! Ha! they're going to have a shock as I'm going to have to put in supplemental notes for each question that there isn't enough room. It's going to end up like a journal! I suggested to Rob that I go away when we move and he laughed and said I'd never manage it, I'd be back to organise everyone! I saw that about , lovey, I hope all is well, sending much love and strength to you and your family xx Peggy, I know that about pred, I've been on it for years, but it usually only affects me when I'm coming down off of a high dose and I've been stable at my current dose for a few months now. Still it might be worth seeing if something else will work. Love Ze xx>> Ze....I fret over you and these decisions that face you. Of course the decisions are all about Lili in the long run and I know that too.> Uggggg. Moving. Yes it is a huge task. I think you have a good idea to just leave and let others do it for you. I'm just like you are and I'll have to do the same whenever we can finally find a DOWNSTAIRS apt. (We've been looking but don't want to live in a family unit with lots of kids and can't afford market rent. Have to have a subsidy so our choices come few and far between.)> is with family, with a niece, Casey who is in very serious condition in the hospital. I'm sorry I can't remember the name of what happened to her. It is life threatening....someone else jump in here and tell Ze what mama forgets!> Hugs to you too and I know God will help you make your decisions.> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!> > Ze's group hug> > > > Hi All> > I haven't been around a lot, but I have been trying to keep up with the posts.> > There's a lot of newbies here, so I will say a group hello to you all, but am sorry that you have had to find us. I'm 38, mother of a 5 y/o and living in England. I have dermatomyositis, anticardio lipin/antiphospho lipids, pulmonary fibrosis (probably NSIP) Bronchiatisis, pulmonary hypertension and am desperately trying to lose weight so that I am ready for a transplant. I need to lose at least 42lbs before they'll consider me. It's very hard work as I am still on steroids.> > I've been away because I've been trying to deal with my head. It isn't doing me any favours at the moment and I just want it all to go away (not my head I'm quite attached to that lol). I know I don't have a date stamp on me, but I've still had to come to terms with the reality of my prognosis in my docs opinion. This is information I need to make an informed decision on transplant. It's not great, but I have proved the docs wrong in the past, I'll just have to do it again. > > On top of everything I'm having to move house soon, which although will be a positive thing in the long run, it's quite daunting in the short term, we'll probably be getting a smaller place than I'm in now which will be easier for me to look after, but moving itself is going to be difficult for me. We will have plenty of help, but I'm not capable of sitting back and watching others do everything. I may have to go away while they do it all for me.> > I want to say a massive thanks to May and Peggy for letting me rant off site and start to sort my head out.> > Where's ? I've not seen a post from her for a while. > > Sending much love and strength and great big skwishy (((((hugs))))) to everyone who needs them> > Love Ze xx> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Sher, they keep changing the rules here for family housing needs. In some areas the housing is so restricted that they think a family in a one bedroomed property is fine as they can use the living room as a bedroom! They've also changed the age that male and female siblings need to be in separate bedrooms, which considering children are generally developing sooner is somewhat daft! So I know it sounds a bit grabby, but with needing medical equipment in the house should entitle me to an extra room and having a child under the age of 12 and a mobility issue should entitle me to a garden. I know I'm ignorant with how housing is across the pond, I had a quick google to appear knowledgeable! > >> > Ze....I fret over you and these decisions that face you. Of course the decisions are all about Lili in the long run and I know that too.> > Uggggg. Moving. Yes it is a huge task. I think you have a good idea to just leave and let others do it for you. I'm just like you are and I'll have to do the same whenever we can finally find a DOWNSTAIRS apt. (We've been looking but don't want to live in a family unit with lots of kids and can't afford market rent. Have to have a subsidy so our choices come few and far between.)> > is with family, with a niece, Casey who is in very serious condition in the hospital. I'm sorry I can't remember the name of what happened to her. It is life threatening....someone else jump in here and tell Ze what mama forgets!> > Hugs to you too and I know God will help you make your decisions.> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > Don't fret about tomorrow, God is already there!> > > > Ze's group hug> > > > > > > > Hi All> > > > I haven't been around a lot, but I have been trying to keep up with the posts.> > > > There's a lot of newbies here, so I will say a group hello to you all, but am sorry that you have had to find us. I'm 38, mother of a 5 y/o and living in England. I have dermatomyositis, anticardio lipin/antiphospho lipids, pulmonary fibrosis (probably NSIP) Bronchiatisis, pulmonary hypertension and am desperately trying to lose weight so that I am ready for a transplant. I need to lose at least 42lbs before they'll consider me. It's very hard work as I am still on steroids.> > > > I've been away because I've been trying to deal with my head. It isn't doing me any favours at the moment and I just want it all to go away (not my head I'm quite attached to that lol). I know I don't have a date stamp on me, but I've still had to come to terms with the reality of my prognosis in my docs opinion. This is information I need to make an informed decision on transplant. It's not great, but I have proved the docs wrong in the past, I'll just have to do it again. > > > > On top of everything I'm having to move house soon, which although will be a positive thing in the long run, it's quite daunting in the short term, we'll probably be getting a smaller place than I'm in now which will be easier for me to look after, but moving itself is going to be difficult for me. We will have plenty of help, but I'm not capable of sitting back and watching others do everything. I may have to go away while they do it all for me.> > > > I want to say a massive thanks to May and Peggy for letting me rant off site and start to sort my head out.> > > > Where's ? I've not seen a post from her for a while. > > > > Sending much love and strength and great big skwishy (((((hugs))))) to everyone who needs them> > > > Love Ze xx> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Zena, Thanks for the HUGGGGGGGGGGGGGGGG. Felt is all the way across the pond. Here's one coming your way, too!! HHHHHUUUUUUGGGGGGGGGGG. How come you have to move? Leanne uip 1/03 Illinois > > > Sher, they keep changing the rules here for family housing needs. In > some areas the housing is so restricted that they think a family in a > one bedroomed property is fine as they can use the living room as a > bedroom! They've also changed the age that male and female siblings > need to be in separate bedrooms, which considering children are > generally developing sooner is somewhat daft! So I know it sounds a bit > grabby, but with needing medical equipment in the house should entitle > me to an extra room and having a child under the age of 12 and a > mobility issue should entitle me to a garden. > > I know I'm ignorant with how housing is across the pond, I had a quick > google to appear knowledgeable! [:-B] > > > > > > > Ze....I fret over you and these decisions that face you. Of course > the decisions are all about Lili in the long run and I know that too. > > > Uggggg. Moving. Yes it is a huge task. I think you have a good idea > to just leave and let others do it for you. I'm just like you are and > I'll have to do the same whenever we can finally find a DOWNSTAIRS apt. > (We've been looking but don't want to live in a family unit with lots of > kids and can't afford market rent. Have to have a subsidy so our choices > come few and far between.) > > > is with family, with a niece, Casey who is in very serious > condition in the hospital. I'm sorry I can't remember the name of what > happened to her. It is life threatening....someone else jump in here and > tell Ze what mama forgets! > > > Hugs to you too and I know God will help you make your decisions. > > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. > > > Don't fret about tomorrow, God is already there! > > > > > > Ze's group hug > > > > > > > > > > > > Hi All > > > > > > I haven't been around a lot, but I have been trying to keep up with > the posts. > > > > > > There's a lot of newbies here, so I will say a group hello to you > all, but am sorry that you have had to find us. I'm 38, mother of a 5 > y/o and living in England. I have dermatomyositis, anticardio > lipin/antiphospho lipids, pulmonary fibrosis (probably NSIP) > Bronchiatisis, pulmonary hypertension and am desperately trying to lose > weight so that I am ready for a transplant. I need to lose at least > 42lbs before they'll consider me. It's very hard work as I am still on > steroids. > > > > > > I've been away because I've been trying to deal with my head. It > isn't doing me any favours at the moment and I just want it all to go > away (not my head I'm quite attached to that lol). I know I don't have a > date stamp on me, but I've still had to come to terms with the reality > of my prognosis in my docs opinion. This is information I need to make > an informed decision on transplant. It's not great, but I have proved > the docs wrong in the past, I'll just have to do it again. > > > > > > On top of everything I'm having to move house soon, which although > will be a positive thing in the long run, it's quite daunting in the > short term, we'll probably be getting a smaller place than I'm in now > which will be easier for me to look after, but moving itself is going to > be difficult for me. We will have plenty of help, but I'm not capable of > sitting back and watching others do everything. I may have to go away > while they do it all for me. > > > > > > I want to say a massive thanks to May and Peggy for letting me rant > off site and start to sort my head out. > > > > > > Where's ? I've not seen a post from her for a while. > > > > > > Sending much love and strength and great big skwishy (((((hugs))))) > to everyone who needs them > > > > > > Love Ze xx > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2008 Report Share Posted May 20, 2008 Zena, I don't know how you get your mind to accept this devastating disease at such a young age. I have a difficult time at 63. Transplant is a hope and a terror all wrapped up in one. Gwynne has given hope to so many through her recounting of her successful transplant. Zena, we miss you when you are not here. But, it is understandable that you have down days and just need to escape. Hug that sweet little girl and take all the time you need. We love you. has a neice who is seriously ill and she has traveled to be with the family. I miss her too. 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>> > Hi All> > I haven't been around a lot, but I have been trying to keep up with the> posts.> > There's a lot of newbies here, so I will say a group hello to you all,> but am sorry that you have had to find us. I'm 38, mother of a 5 y/o> and living in England. I have dermatomyositis, anticardio> lipin/antiphospho lipids, pulmonary fibrosis (probably NSIP)> Bronchiatisis, pulmonary hypertension and am desperately trying to lose> weight so that I am ready for a transplant. I need to lose at least> 42lbs before they'll consider me. It's very hard work as I am still on> steroids.> > I've been away because I've been trying to deal with my head. It isn't> doing me any favours at the moment and I just want it all to go away> (not my head I'm quite attached to that lol). I know I don't have a> date stamp on me, but I've still had to come to terms with the reality> of my prognosis in my docs opinion. This is information I need to make> an informed decision on transplant. It's not great, but I have proved> the docs wrong in the past, I'll just have to do it again.> > On top of everything I'm having to move house soon, which although will> be a positive thing in the long run, it's quite daunting in the short> term, we'll probably be getting a smaller place than I'm in now which> will be easier for me to look after, but moving itself is going to be> difficult for me. We will have plenty of help, but I'm not capable of> sitting back and watching others do everything. I may have to go away> while they do it all for me.> > I want to say a massive thanks to May and Peggy for letting me rant off> site and start to sort my head out.> > Where's ? I've not seen a post from her for a while.> > Sending much love and strength and great big skwishy (((((hugs))))) to> everyone who needs them> > Love Ze xx> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.