Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Thank you to those of you who sent words of comfort and caring. What I'm going to say next is going to sound harsh to some of you, and I don't mean to minimize the replies that I have gotten, but part of me is a little surprised and hurt that I didn't get more response from the forum to my post about fighting for my life. Fortunately, I wasn't posting to get responses but to vent. Sometimes I feel like being a strong person can work against you in terms of getting empathy from a group like this (like, " Well, she seems to be doing fine most of the time, so she doesn't need as much attention when she's distraught, because it'll pass " ). I realize that many of our group are newer to the disease, and may be afraid of facing the later stages of the monster that I represent. Enough of the pity-party, but we all need validation. And I love this group no matter what... we're all just human and doing the best we can. Sometimes my sensitivity can be a curse and a blessing. Sher, One of my caregivers spends every night at my house, and 2 of the 4 of them have gotten to be pretty good friends. My " regular " friends are never more than a phone call or quick drive away. They get it much more than you'd expect for people who don't have the disease. It helps when your friends are authentic, mature, and have faced the monster in one form or another, even if it isn't IPF. It probably doesn't hurt that a few of them are retired nurses, like my dear sister-in-law. She's sort been my rock all along this journey. I am very blessed to have my support system. Sher, sats dropping despite being on 02 typically simply means you still aren't getting enough 02. Maybe your oxygen needs have increased in a hurry. Don't compare any of those numbers to how you felt when you weren't on 02, because I think you needed to be on it even though you weren't. And the numbers don't always jive with how you feel. Usually, though not always, the drop in sats corresponds to SOB. How you feel is what you pay attention to and talk to your doctor about first and foremost! Test numbers going down can be changes from one test procedure or machine to another, which is usually slight, or it means disease progression, however slight. BTW, you were NOT blessed to live in Longview. I'm sorry that's your impression of Texas. Hopefully you know Texas is not all just one big Longview!! Bruce, You're a dear to inquire, but Gwynne's Gift (the name of the organization) is in such a formative stage (baby steps) that there is no single place, address, or website to contact (and for sure not to make donations to!) If at some stage (hopefully farther down the road than I've been feeling lately) you want to make a special effort to honor me, perhaps a kind word to my 2 children about their mother would be the greatest gift to me. They are being so brave but obviously are in pain.They have great respect for their mother, thank God, but the organization has given them a chance to feel more proactive about serving the greater good as well as their mother. , Have a safe trip, dear girl. I hope your father won't be a curmudgeon after his hospital stay. Take care of you. Beth, Thank you for the special caring touch your messages always have. I wish you had been my nurse for any of the occasions I've had to be in the hospital!!!! I greatly appreciate your honest sharing and your friendship. I'm glad spring is lovely there. It's actually quite pretty in Fort Worth these days, too. Irene, I don't even pretend to get what's going on with your medical situation. I pray things move in more of a positive direction for you soon. I'm sorry your hand is acting up again - dammit! Zena, How's the skin doing the past few days? Better, I hope! Z, I'm so sorry about your daughter's lingering depression. It's hard enough to have a new baby without battling that as well. I hope the counseling will help a lot, and the meds. I'm grateful that she has such wonderful help from both sets of parents. I'm sorry, though, that you have to watch your child be in pain like that. You're in my prayers. Jane, Are you feeling stronger? I think of you often. Joyce, I'm sorry you had such a scary incident. I can't even imagine trying to manage a medication like Flolan. It isn't right that insurance won't pay for help in that area. What IS right about insurance? I was told today by an 02 supplier who doesn't want to furnish me a 15L reservoir that he " doesn't feel good about my case. " He spouted excuses about paperwork and liability, but I think he mainly feels I'm probably near death and am more effort than it's worth to accommo- date me. I hate to think there are people out there with that attitude, but it's an unfortunate reality. OMG, more sharp instruments. Well, at least you are experiencing some comfort. I'm sorry for the added tests, though. There are more I want to reply to, but my computer power's about to poop out doing the wireless thing. Hugs and blessings, Gwynne 56 IPF 7/04 listed for transplant 3-07 and 2/08 Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Hi Gwynne, Since I've started putting on the factor 50, I've had no problems with my skin, so it's obviously the sunlight, I just thought it would be a bit early for that seeing that I'm still wrapped up for winter! I know what you mean about being strong working against you. I find this attitude within my circles of friends. I'm not trying to suggest that they don't care, but that as I cope fairly well from day to day compared to some people in a similar position, coupled with them not really understanding much about PF, they think I'm better at handling it than I actually am.>> > Thank you to those of you who sent words of> comfort and caring. What I'm going to say next> is going to sound harsh to some of you, and I> don't mean to minimize the replies that I have> gotten, but part of me is a little surprised and> hurt that I didn't get more response from the> forum to my post about fighting for my life.> Fortunately, I wasn't posting to get responses> but to vent.> Sometimes I feel like being a strong person can> work against you in terms of getting empathy> from a group like this (like, "Well, she seems to be> doing fine most of the time, so she doesn't need as> much attention when she's distraught, because> it'll pass"). I realize that many of our group are> newer to the disease, and may be afraid of facing> the later stages of the monster that I represent.> Enough of the pity-party, but we all need validation.> And I love this group no matter what... we're all> just human and doing the best we can. Sometimes> my sensitivity can be a curse and a blessing.> > Sher,> One of my caregivers spends every night> at my house, and 2 of the 4 of them have gotten> to be pretty good friends. My "regular" friends> are never more than a phone call or quick drive> away. They get it much more than you'd expect> for people who don't have the disease. It helps> when your friends are authentic, mature, and have> faced the monster in one form or another, even if> it isn't IPF. It probably doesn't hurt that a few of> them are retired nurses, like my dear sister-in-law.> She's sort been my rock all along this journey. I> am very blessed to have my support system.> > Sher, sats dropping despite being on 02 typically> simply means you still aren't getting enough 02. Maybe> your oxygen needs have increased in a hurry. Don't> compare any of those numbers to how you felt when> you weren't on 02, because I think you needed to be> on it even though you weren't. And the numbers don't> always jive with how you feel. Usually, though not> always, the drop in sats corresponds to SOB. How> you feel is what you pay attention to and talk to> your doctor about first and foremost! Test numbers> going down can be changes from one test procedure> or machine to another, which is usually slight, or> it means disease progression, however slight.> > BTW, you were NOT blessed to live in Longview.> I'm sorry that's your impression of Texas. Hopefully> you know Texas is not all just one big Longview!!> > Bruce,> You're a dear to inquire, but Gwynne's Gift (the> name of the organization) is in such a formative> stage (baby steps) that there is no single place,> address, or website to contact (and for sure not to> make donations to!) If at some stage (hopefully> farther down the road than I've been feeling lately)> you want to make a special effort to honor me,> perhaps a kind word to my 2 children about their> mother would be the greatest gift to me. They are> being so brave but obviously are in pain.They have> great respect for their mother, thank God, but the> organization has given them a chance to feel more> proactive about serving the greater good as well as> their mother.> > ,> Have a safe trip, dear girl. I hope your father won't> be a curmudgeon after his hospital stay. Take care> of you.> > Beth,> Thank you for the special caring touch your messages> always have. I wish you had been my nurse for> any of the occasions I've had to be in the hospital!!!!> I greatly appreciate your honest sharing and your> friendship. I'm glad spring is lovely there. It's actually> quite pretty in Fort Worth these days, too.> > Irene,> I don't even pretend to get what's going on with your> medical situation. I pray things move in more of a> positive direction for you soon. I'm sorry your hand> is acting up again - dammit!> > Zena,> How's the skin doing the past few days? Better, I hope!> > Z,> I'm so sorry about your daughter's lingering depression.> It's hard enough to have a new baby without battling> that as well. I hope the counseling will help a lot, and> the meds. I'm grateful that she has such wonderful> help from both sets of parents. I'm sorry, though, that> you have to watch your child be in pain like that. You're> in my prayers.> > Jane,> Are you feeling stronger? I think of you often.> > Joyce,> I'm sorry you had such a scary incident. I can't even> imagine trying to manage a medication like Flolan.> It isn't right that insurance won't pay for help in> that area. What IS right about insurance? I was told> today by an 02 supplier who doesn't want to furnish> me a 15L reservoir that he "doesn't feel good about> my case." He spouted excuses about paperwork and> liability, but I think he mainly feels I'm probably near> death and am more effort than it's worth to accommo-> date me. I hate to think there are people out there with> that attitude, but it's an unfortunate reality.> OMG, more sharp instruments. Well, at least you are> experiencing some comfort. I'm sorry for the added> tests, though.> > There are more I want to reply to, but my computer> power's about to poop out doing the wireless thing.> > Hugs and blessings,> Gwynne 56 IPF 7/04 listed for transplant 3-07 and> 2/08 Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Gwynne, I also get the remarks from Apria (my 02 supplier) such as you shouldn't even be going out if you require high flow....and we have too much to do, you are not our only patient. Those and other remarks from people who had no right to even say anything led me to contact regional managers, vice presidents and even the company president. Leanne also got a regional VP of Apria to help. I get the feeling from them many times that they wish I would just die and get out of thier busy day. But, I ain't done! They will just have to hustle a little more. Take shorter breaks! The regional director told me the other day that I was the only high flow patient that they had. I think they are learning a few thngs from me. I will not be ignored and neglected. I am sick and I am tired.....but I can be mean if I choose to. Gwynne, you and I have so much in common as far as our needs are concerned. You inspire me to be stronger. I think....Gwynne puts on make up and goes out....I can do that. Gwynne is strong, I can be strong. Gwynne gets discouraged on a daily basis, but recovers...I can do that! I told my husband that having you here is so very good for me because I know you are where I am. You are helping me more than you know. I pray that I help you, I want to. I am so worried about . I plan to call her today. She is not answering my e-mails. Do you know if she has been on the phone chats? 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 >> > Thank you to those of you who sent words of> comfort and caring. What I'm going to say next> is going to sound harsh to some of you, and I> don't mean to minimize the replies that I have> gotten, but part of me is a little surprised and> hurt that I didn't get more response from the> forum to my post about fighting for my life.> Fortunately, I wasn't posting to get responses> but to vent.> Sometimes I feel like being a strong person can> work against you in terms of getting empathy> from a group like this (like, "Well, she seems to be> doing fine most of the time, so she doesn't need as> much attention when she's distraught, because> it'll pass"). I realize that many of our group are> newer to the disease, and may be afraid of facing> the later stages of the monster that I represent.> Enough of the pity-party, but we all need validation.> And I love this group no matter what... we're all> just human and doing the best we can. Sometimes> my sensitivity can be a curse and a blessing.> > Sher,> One of my caregivers spends every night> at my house, and 2 of the 4 of them have gotten> to be pretty good friends. My "regular" friends> are never more than a phone call or quick drive> away. They get it much more than you'd expect> for people who don't have the disease. It helps> when your friends are authentic, mature, and have> faced the monster in one form or another, even if> it isn't IPF. It probably doesn't hurt that a few of> them are retired nurses, like my dear sister-in-law.> She's sort been my rock all along this journey. I> am very blessed to have my support system.> > Sher, sats dropping despite being on 02 typically> simply means you still aren't getting enough 02. Maybe> your oxygen needs have increased in a hurry. Don't> compare any of those numbers to how you felt when> you weren't on 02, because I think you needed to be> on it even though you weren't. And the numbers don't> always jive with how you feel. Usually, though not> always, the drop in sats corresponds to SOB. How> you feel is what you pay attention to and talk to> your doctor about first and foremost! Test numbers> going down can be changes from one test procedure> or machine to another, which is usually slight, or> it means disease progression, however slight.> > BTW, you were NOT blessed to live in Longview.> I'm sorry that's your impression of Texas. Hopefully> you know Texas is not all just one big Longview!!> > Bruce,> You're a dear to inquire, but Gwynne's Gift (the> name of the organization) is in such a formative> stage (baby steps) that there is no single place,> address, or website to contact (and for sure not to> make donations to!) If at some stage (hopefully> farther down the road than I've been feeling lately)> you want to make a special effort to honor me,> perhaps a kind word to my 2 children about their> mother would be the greatest gift to me. They are> being so brave but obviously are in pain.They have> great respect for their mother, thank God, but the> organization has given them a chance to feel more> proactive about serving the greater good as well as> their mother.> > ,> Have a safe trip, dear girl. I hope your father won't> be a curmudgeon after his hospital stay. Take care> of you.> > Beth,> Thank you for the special caring touch your messages> always have. I wish you had been my nurse for> any of the occasions I've had to be in the hospital!!!!> I greatly appreciate your honest sharing and your> friendship. I'm glad spring is lovely there. It's actually> quite pretty in Fort Worth these days, too.> > Irene,> I don't even pretend to get what's going on with your> medical situation. I pray things move in more of a> positive direction for you soon. I'm sorry your hand> is acting up again - dammit!> > Zena,> How's the skin doing the past few days? Better, I hope!> > Z,> I'm so sorry about your daughter's lingering depression.> It's hard enough to have a new baby without battling> that as well. I hope the counseling will help a lot, and> the meds. I'm grateful that she has such wonderful> help from both sets of parents. I'm sorry, though, that> you have to watch your child be in pain like that. You're> in my prayers.> > Jane,> Are you feeling stronger? I think of you often.> > Joyce,> I'm sorry you had such a scary incident. I can't even> imagine trying to manage a medication like Flolan.> It isn't right that insurance won't pay for help in> that area. What IS right about insurance? I was told> today by an 02 supplier who doesn't want to furnish> me a 15L reservoir that he "doesn't feel good about> my case." He spouted excuses about paperwork and> liability, but I think he mainly feels I'm probably near> death and am more effort than it's worth to accommo-> date me. I hate to think there are people out there with> that attitude, but it's an unfortunate reality.> OMG, more sharp instruments. Well, at least you are> experiencing some comfort. I'm sorry for the added> tests, though.> > There are more I want to reply to, but my computer> power's about to poop out doing the wireless thing.> > Hugs and blessings,> Gwynne 56 IPF 7/04 listed for transplant 3-07 and> 2/08 Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Joyce I just looked and she hasn't posted since the 3rd, so if you do feel like it, please do call. Or, if not, if Leanne could check. We need some sort of buddy system as I thought it had just been a week maybe since I'd read a post of hers. > > > > > > Thank you to those of you who sent words of > > comfort and caring. What I'm going to say next > > is going to sound harsh to some of you, and I > > don't mean to minimize the replies that I have > > gotten, but part of me is a little surprised and > > hurt that I didn't get more response from the > > forum to my post about fighting for my life. > > Fortunately, I wasn't posting to get responses > > but to vent. > > Sometimes I feel like being a strong person can > > work against you in terms of getting empathy > > from a group like this (like, " Well, she seems to be > > doing fine most of the time, so she doesn't need as > > much attention when she's distraught, because > > it'll pass " ). I realize that many of our group are > > newer to the disease, and may be afraid of facing > > the later stages of the monster that I represent. > > Enough of the pity-party, but we all need validation. > > And I love this group no matter what... we're all > > just human and doing the best we can. Sometimes > > my sensitivity can be a curse and a blessing. > > > > Sher, > > One of my caregivers spends every night > > at my house, and 2 of the 4 of them have gotten > > to be pretty good friends. My " regular " friends > > are never more than a phone call or quick drive > > away. They get it much more than you'd expect > > for people who don't have the disease. It helps > > when your friends are authentic, mature, and have > > faced the monster in one form or another, even if > > it isn't IPF. It probably doesn't hurt that a few of > > them are retired nurses, like my dear sister-in-law. > > She's sort been my rock all along this journey. I > > am very blessed to have my support system. > > > > Sher, sats dropping despite being on 02 typically > > simply means you still aren't getting enough 02. Maybe > > your oxygen needs have increased in a hurry. Don't > > compare any of those numbers to how you felt when > > you weren't on 02, because I think you needed to be > > on it even though you weren't. And the numbers don't > > always jive with how you feel. Usually, though not > > always, the drop in sats corresponds to SOB. How > > you feel is what you pay attention to and talk to > > your doctor about first and foremost! Test numbers > > going down can be changes from one test procedure > > or machine to another, which is usually slight, or > > it means disease progression, however slight. > > > > BTW, you were NOT blessed to live in Longview. > > I'm sorry that's your impression of Texas. Hopefully > > you know Texas is not all just one big Longview!! > > > > Bruce, > > You're a dear to inquire, but Gwynne's Gift (the > > name of the organization) is in such a formative > > stage (baby steps) that there is no single place, > > address, or website to contact (and for sure not to > > make donations to!) If at some stage (hopefully > > farther down the road than I've been feeling lately) > > you want to make a special effort to honor me, > > perhaps a kind word to my 2 children about their > > mother would be the greatest gift to me. They are > > being so brave but obviously are in pain.They have > > great respect for their mother, thank God, but the > > organization has given them a chance to feel more > > proactive about serving the greater good as well as > > their mother. > > > > , > > Have a safe trip, dear girl. I hope your father won't > > be a curmudgeon after his hospital stay. Take care > > of you. > > > > Beth, > > Thank you for the special caring touch your messages > > always have. I wish you had been my nurse for > > any of the occasions I've had to be in the hospital!!!! > > I greatly appreciate your honest sharing and your > > friendship. I'm glad spring is lovely there. It's actually > > quite pretty in Fort Worth these days, too. > > > > Irene, > > I don't even pretend to get what's going on with your > > medical situation. I pray things move in more of a > > positive direction for you soon. I'm sorry your hand > > is acting up again - dammit! > > > > Zena, > > How's the skin doing the past few days? Better, I hope! > > > > Z, > > I'm so sorry about your daughter's lingering depression. > > It's hard enough to have a new baby without battling > > that as well. I hope the counseling will help a lot, and > > the meds. I'm grateful that she has such wonderful > > help from both sets of parents. I'm sorry, though, that > > you have to watch your child be in pain like that. You're > > in my prayers. > > > > Jane, > > Are you feeling stronger? I think of you often. > > > > Joyce, > > I'm sorry you had such a scary incident. I can't even > > imagine trying to manage a medication like Flolan. > > It isn't right that insurance won't pay for help in > > that area. What IS right about insurance? I was told > > today by an 02 supplier who doesn't want to furnish > > me a 15L reservoir that he " doesn't feel good about > > my case. " He spouted excuses about paperwork and > > liability, but I think he mainly feels I'm probably near > > death and am more effort than it's worth to accommo- > > date me. I hate to think there are people out there with > > that attitude, but it's an unfortunate reality. > > OMG, more sharp instruments. Well, at least you are > > experiencing some comfort. I'm sorry for the added > > tests, though. > > > > There are more I want to reply to, but my computer > > power's about to poop out doing the wireless thing. > > > > Hugs and blessings, > > Gwynne 56 IPF 7/04 listed for transplant 3-07 and > > 2/08 Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Babs... I think it bears repeating that we don't all read posts in the same forum so we are surely going to miss some once in awhile. We'll have to come up with some sort of icon so when we need support we can 'flag' our post... Take care. Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: misc. Gwynne, I have to second what our Scilly said. I too don't feellike I belong here as I'm only on 2 lpm of O2 and still holding fairlysteady. Am I sick enough to be here? I guess, but I'm not nearly tothe stage that you and Joyce and a few others are at. I can't have atransplant, so on that subject I never know what to say. I'm notwaiting for that life saving phone call. I won't insult you by sayingI know what you're going through because I don't, and I never will asfar as the transplant situation goes. But I will be at end-stageeventually with this disease, and on that score I can tell you that Ifully understand how you feel. And it scares me. And it freaks me out.And I can't talk to my family or friends about the boogey man calledPF that visits me late at night and makes me cry. But here, on thisboard, I know that you all "get" it. I probably come across as one ofthose people who is strong and is a shoulder to lean on. Most days,that is me. But some days I need a friend, and this board providesthat. So I do understand where you feel like we let you down.The other thing I want to express is that this is such a busy supportboard. I belong to another PF board that is not anywhere even close tothis busy, and it's far easier to get in a reply or to post and knowthat the others will see it. There have been numerous times since Ijoined this board that I have felt overlooked or ignored but I try notto take it personally. I assume that others have the same problem Ido, and just can't catch up with the thread or feel that it's too lateto reply.I love this board. I love each and every single person on this board,but I have a hard time keeping up with all the posts and even moretrouble in replying to them all. I could easily spend hours here everyday and that is just a physical impossibility for me. And especiallywith the time change and warmer days coming, I will be out in my yardas much as possible, and not on the board.So, what my long-winded response means is this: I think of you everyday. I think of every single person on this board every day. I prayfor all of you (yes,each and every one of you) every night. My prayershave become so long that God must be scanning and listening to thereally important parts only. :)Gwynne, I'm so sorry if I didn't reply to your post. I truly am. Iwould never intentionally hurt another persons feelings, ever. But Iknow that I haven't posted to some people and I hope they don't feelthat I'm being snotty or snarky. On the flip side, they haven't postedto me either. and it's ok. Eventually we will have something to sayto each other.So please don't take it personally. I adore your spirit and yourfortitude. I pray every night that the phone will ring and you will begranted a new life. I see the friendships that you have built on thisboard and it makes me jealous. I want to know this wonderful woman whoinspires so many of us in our lives. I want to be "in" on all thejokes and such, but I know that it takes time to build the relationships.So in closing (and you thought I would never stop, right?) please knowthat I care deeply about you and how you feel. I want that stupid damnphone to ring for you. I wish I had magic powers so I could make thathappen. The only magical thing in my life is the support and caringI've found amongst my PF friends. So, I guess I DO belong here (and sodo YOU Scilly ) and I will try to at least acknowledge in thefuture any posts that you have. WE LOVE YOU GWYNNE! From me, to you, Hugs bigger than the Texas sky!Babs>> > Thank you to those of you who sent words of> comfort and caring. What I'm going to say next> is going to sound harsh to some of you, and I> don't mean to minimize the replies that I have> gotten, but part of me is a little surprised and> hurt that I didn't get more response from the> forum to my post about fighting for my life.> Fortunately, I wasn't posting to get responses> but to vent.> Sometimes I feel like being a strong person can> work against you in terms of getting empathy> from a group like this (like, "Well, she seems to be> doing fine most of the time, so she doesn't need as> much attention when she's distraught, because> it'll pass"). I realize that many of our group are> newer to the disease, and may be afraid of facing> the later stages of the monster that I represent.> Enough of the pity-party, but we all need validation.> And I love this group no matter what... we're all> just human and doing the best we can. Sometimes> my sensitivity can be a curse and a blessing.> > Sher,> One of my caregivers spends every night> at my house, and 2 of the 4 of them have gotten> to be pretty good friends. My "regular" friends> are never more than a phone call or quick drive> away. They get it much more than you'd expect> for people who don't have the disease. It helps> when your friends are authentic, mature, and have> faced the monster in one form or another, even if> it isn't IPF. It probably doesn't hurt that a few of> them are retired nurses, like my dear sister-in-law.> She's sort been my rock all along this journey. I> am very blessed to have my support system.> > Sher, sats dropping despite being on 02 typically> simply means you still aren't getting enough 02. Maybe> your oxygen needs have increased in a hurry. Don't> compare any of those numbers to how you felt when> you weren't on 02, because I think you needed to be> on it even though you weren't. And the numbers don't> always jive with how you feel. Usually, though not> always, the drop in sats corresponds to SOB. How> you feel is what you pay attention to and talk to> your doctor about first and foremost! Test numbers> going down can be changes from one test procedure> or machine to another, which is usually slight, or> it means disease progression, however slight.> > BTW, you were NOT blessed to live in Longview.> I'm sorry that's your impression of Texas. Hopefully> you know Texas is not all just one big Longview!!> > Bruce,> You're a dear to inquire, but Gwynne's Gift (the> name of the organization) is in such a formative> stage (baby steps) that there is no single place,> address, or website to contact (and for sure not to> make donations to!) If at some stage (hopefully> farther down the road than I've been feeling lately)> you want to make a special effort to honor me,> perhaps a kind word to my 2 children about their> mother would be the greatest gift to me. They are> being so brave but obviously are in pain.They have> great respect for their mother, thank God, but the> organization has given them a chance to feel more> proactive about serving the greater good as well as> their mother.> > ,> Have a safe trip, dear girl. I hope your father won't> be a curmudgeon after his hospital stay. Take care> of you.> > Beth,> Thank you for the special caring touch your messages> always have. I wish you had been my nurse for> any of the occasions I've had to be in the hospital!!!!> I greatly appreciate your honest sharing and your> friendship. I'm glad spring is lovely there. It's actually> quite pretty in Fort Worth these days, too.> > Irene,> I don't even pretend to get what's going on with your> medical situation. I pray things move in more of a> positive direction for you soon. I'm sorry your hand> is acting up again - dammit!> > Zena,> How's the skin doing the past few days? Better, I hope!> > Z,> I'm so sorry about your daughter's lingering depression.> It's hard enough to have a new baby without battling> that as well. I hope the counseling will help a lot, and> the meds. I'm grateful that she has such wonderful> help from both sets of parents. I'm sorry, though, that> you have to watch your child be in pain like that. You're> in my prayers.> > Jane,> Are you feeling stronger? I think of you often.> > Joyce,> I'm sorry you had such a scary incident. I can't even> imagine trying to manage a medication like Flolan.> It isn't right that insurance won't pay for help in> that area. What IS right about insurance? I was told> today by an 02 supplier who doesn't want to furnish> me a 15L reservoir that he "doesn't feel good about> my case." He spouted excuses about paperwork and> liability, but I think he mainly feels I'm probably near> death and am more effort than it's worth to accommo-> date me. I hate to think there are people out there with> that attitude, but it's an unfortunate reality.> OMG, more sharp instruments. Well, at least you are> experiencing some comfort. I'm sorry for the added> tests, though.> > There are more I want to reply to, but my computer> power's about to poop out doing the wireless thing.> > Hugs and blessings,> Gwynne 56 IPF 7/04 listed for transplant 3-07 and> 2/08 Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Mama-Sher, I agree. I don't read mine from my email, I come to the site and peruse them here. But definitely there are times I miss some, and sometimes I get interrupted and forget to come back, and sometimes I just forget that there was a post I wanted to reply to....lupus fog on my brain, y'know. I want to reiterate that I would not ever, ever, ever hurt anyone's feelings on this board by ignoring a post directed at me, or that was obviously a cry for help. After all, this is a support board and that's what we try to do, offer support. Maybe we need a code word in the subject line.....like Code Blue for having the blues..... Love you! Hugs! Babs > > > > > > Thank you to those of you who sent words of > > comfort and caring. What I'm going to say next > > is going to sound harsh to some of you, and I > > don't mean to minimize the replies that I have > > gotten, but part of me is a little surprised and > > hurt that I didn't get more response from the > > forum to my post about fighting for my life. > > Fortunately, I wasn't posting to get responses > > but to vent. > > Sometimes I feel like being a strong person can > > work against you in terms of getting empathy > > from a group like this (like, " Well, she seems to be > > doing fine most of the time, so she doesn't need as > > much attention when she's distraught, because > > it'll pass " ). I realize that many of our group are > > newer to the disease, and may be afraid of facing > > the later stages of the monster that I represent. > > Enough of the pity-party, but we all need validation. > > And I love this group no matter what... we're all > > just human and doing the best we can. Sometimes > > my sensitivity can be a curse and a blessing. > > > > Sher, > > One of my caregivers spends every night > > at my house, and 2 of the 4 of them have gotten > > to be pretty good friends. My " regular " friends > > are never more than a phone call or quick drive > > away. They get it much more than you'd expect > > for people who don't have the disease. It helps > > when your friends are authentic, mature, and have > > faced the monster in one form or another, even if > > it isn't IPF. It probably doesn't hurt that a few of > > them are retired nurses, like my dear sister-in-law. > > She's sort been my rock all along this journey. I > > am very blessed to have my support system. > > > > Sher, sats dropping despite being on 02 typically > > simply means you still aren't getting enough 02. Maybe > > your oxygen needs have increased in a hurry. Don't > > compare any of those numbers to how you felt when > > you weren't on 02, because I think you needed to be > > on it even though you weren't. And the numbers don't > > always jive with how you feel. Usually, though not > > always, the drop in sats corresponds to SOB. How > > you feel is what you pay attention to and talk to > > your doctor about first and foremost! Test numbers > > going down can be changes from one test procedure > > or machine to another, which is usually slight, or > > it means disease progression, however slight. > > > > BTW, you were NOT blessed to live in Longview. > > I'm sorry that's your impression of Texas. Hopefully > > you know Texas is not all just one big Longview!! > > > > Bruce, > > You're a dear to inquire, but Gwynne's Gift (the > > name of the organization) is in such a formative > > stage (baby steps) that there is no single place, > > address, or website to contact (and for sure not to > > make donations to!) If at some stage (hopefully > > farther down the road than I've been feeling lately) > > you want to make a special effort to honor me, > > perhaps a kind word to my 2 children about their > > mother would be the greatest gift to me. They are > > being so brave but obviously are in pain.They have > > great respect for their mother, thank God, but the > > organization has given them a chance to feel more > > proactive about serving the greater good as well as > > their mother. > > > > , > > Have a safe trip, dear girl. I hope your father won't > > be a curmudgeon after his hospital stay. Take care > > of you. > > > > Beth, > > Thank you for the special caring touch your messages > > always have. I wish you had been my nurse for > > any of the occasions I've had to be in the hospital!!!! > > I greatly appreciate your honest sharing and your > > friendship. I'm glad spring is lovely there. It's actually > > quite pretty in Fort Worth these days, too. > > > > Irene, > > I don't even pretend to get what's going on with your > > medical situation. I pray things move in more of a > > positive direction for you soon. I'm sorry your hand > > is acting up again - dammit! > > > > Zena, > > How's the skin doing the past few days? Better, I hope! > > > > Z, > > I'm so sorry about your daughter's lingering depression. > > It's hard enough to have a new baby without battling > > that as well. I hope the counseling will help a lot, and > > the meds. I'm grateful that she has such wonderful > > help from both sets of parents. I'm sorry, though, that > > you have to watch your child be in pain like that. You're > > in my prayers. > > > > Jane, > > Are you feeling stronger? I think of you often. > > > > Joyce, > > I'm sorry you had such a scary incident. I can't even > > imagine trying to manage a medication like Flolan. > > It isn't right that insurance won't pay for help in > > that area. What IS right about insurance? I was told > > today by an 02 supplier who doesn't want to furnish > > me a 15L reservoir that he " doesn't feel good about > > my case. " He spouted excuses about paperwork and > > liability, but I think he mainly feels I'm probably near > > death and am more effort than it's worth to accommo- > > date me. I hate to think there are people out there with > > that attitude, but it's an unfortunate reality. > > OMG, more sharp instruments. Well, at least you are > > experiencing some comfort. I'm sorry for the added > > tests, though. > > > > There are more I want to reply to, but my computer > > power's about to poop out doing the wireless thing. > > > > Hugs and blessings, > > Gwynne 56 IPF 7/04 listed for transplant 3-07 and > > 2/08 Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Mama-Sher, I agree. I don't read mine from my email, I come to the site and peruse them here. But definitely there are times I miss some, and sometimes I get interrupted and forget to come back, and sometimes I just forget that there was a post I wanted to reply to....lupus fog on my brain, y'know. I want to reiterate that I would not ever, ever, ever hurt anyone's feelings on this board by ignoring a post directed at me, or that was obviously a cry for help. After all, this is a support board and that's what we try to do, offer support. Maybe we need a code word in the subject line.....like Code Blue for having the blues..... Love you! Hugs! Babs > > > > > > Thank you to those of you who sent words of > > comfort and caring. What I'm going to say next > > is going to sound harsh to some of you, and I > > don't mean to minimize the replies that I have > > gotten, but part of me is a little surprised and > > hurt that I didn't get more response from the > > forum to my post about fighting for my life. > > Fortunately, I wasn't posting to get responses > > but to vent. > > Sometimes I feel like being a strong person can > > work against you in terms of getting empathy > > from a group like this (like, " Well, she seems to be > > doing fine most of the time, so she doesn't need as > > much attention when she's distraught, because > > it'll pass " ). I realize that many of our group are > > newer to the disease, and may be afraid of facing > > the later stages of the monster that I represent. > > Enough of the pity-party, but we all need validation. > > And I love this group no matter what... we're all > > just human and doing the best we can. Sometimes > > my sensitivity can be a curse and a blessing. > > > > Sher, > > One of my caregivers spends every night > > at my house, and 2 of the 4 of them have gotten > > to be pretty good friends. My " regular " friends > > are never more than a phone call or quick drive > > away. They get it much more than you'd expect > > for people who don't have the disease. It helps > > when your friends are authentic, mature, and have > > faced the monster in one form or another, even if > > it isn't IPF. It probably doesn't hurt that a few of > > them are retired nurses, like my dear sister-in-law. > > She's sort been my rock all along this journey. I > > am very blessed to have my support system. > > > > Sher, sats dropping despite being on 02 typically > > simply means you still aren't getting enough 02. Maybe > > your oxygen needs have increased in a hurry. Don't > > compare any of those numbers to how you felt when > > you weren't on 02, because I think you needed to be > > on it even though you weren't. And the numbers don't > > always jive with how you feel. Usually, though not > > always, the drop in sats corresponds to SOB. How > > you feel is what you pay attention to and talk to > > your doctor about first and foremost! Test numbers > > going down can be changes from one test procedure > > or machine to another, which is usually slight, or > > it means disease progression, however slight. > > > > BTW, you were NOT blessed to live in Longview. > > I'm sorry that's your impression of Texas. Hopefully > > you know Texas is not all just one big Longview!! > > > > Bruce, > > You're a dear to inquire, but Gwynne's Gift (the > > name of the organization) is in such a formative > > stage (baby steps) that there is no single place, > > address, or website to contact (and for sure not to > > make donations to!) If at some stage (hopefully > > farther down the road than I've been feeling lately) > > you want to make a special effort to honor me, > > perhaps a kind word to my 2 children about their > > mother would be the greatest gift to me. They are > > being so brave but obviously are in pain.They have > > great respect for their mother, thank God, but the > > organization has given them a chance to feel more > > proactive about serving the greater good as well as > > their mother. > > > > , > > Have a safe trip, dear girl. I hope your father won't > > be a curmudgeon after his hospital stay. Take care > > of you. > > > > Beth, > > Thank you for the special caring touch your messages > > always have. I wish you had been my nurse for > > any of the occasions I've had to be in the hospital!!!! > > I greatly appreciate your honest sharing and your > > friendship. I'm glad spring is lovely there. It's actually > > quite pretty in Fort Worth these days, too. > > > > Irene, > > I don't even pretend to get what's going on with your > > medical situation. I pray things move in more of a > > positive direction for you soon. I'm sorry your hand > > is acting up again - dammit! > > > > Zena, > > How's the skin doing the past few days? Better, I hope! > > > > Z, > > I'm so sorry about your daughter's lingering depression. > > It's hard enough to have a new baby without battling > > that as well. I hope the counseling will help a lot, and > > the meds. I'm grateful that she has such wonderful > > help from both sets of parents. I'm sorry, though, that > > you have to watch your child be in pain like that. You're > > in my prayers. > > > > Jane, > > Are you feeling stronger? I think of you often. > > > > Joyce, > > I'm sorry you had such a scary incident. I can't even > > imagine trying to manage a medication like Flolan. > > It isn't right that insurance won't pay for help in > > that area. What IS right about insurance? I was told > > today by an 02 supplier who doesn't want to furnish > > me a 15L reservoir that he " doesn't feel good about > > my case. " He spouted excuses about paperwork and > > liability, but I think he mainly feels I'm probably near > > death and am more effort than it's worth to accommo- > > date me. I hate to think there are people out there with > > that attitude, but it's an unfortunate reality. > > OMG, more sharp instruments. Well, at least you are > > experiencing some comfort. I'm sorry for the added > > tests, though. > > > > There are more I want to reply to, but my computer > > power's about to poop out doing the wireless thing. > > > > Hugs and blessings, > > Gwynne 56 IPF 7/04 listed for transplant 3-07 and > > 2/08 Texas > > > Quote Link to comment Share on other sites More sharing options...
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