Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Gwynne When I got my sponge bath in the hospital, she shampooed my hair with a rinseless shampoo under a shampoo bonnet. Bet I really looked cute in that...glad on pictures. Now I'd used no rinse shampoo years ago after ear surgery but this seemed to have much more body to it. I was amazed that my hair felt clean and normal. She just put the shampoo under, the bonnet on and went wild rubbing around. Just might be an idea. Around here, I generally find such things as the shampoo at Sally's. > > Hi Judy. > I can totally relate about the difficulty with baths and > showers. As we progress, more things that take upper > body strength sap our air. But I noticed you said > your 02 is " close by " . Sounds to me like you need to > be wearing it. You're sats are probably dropping. > You're smart to have a stool. Some people dry off > while they're still sitting in the shower. I have to sit > before, during, and after I dry off. Some just put on > a thick terrycloth robe instead. It takes some > experimenting to find out what's best for you, but > it will still probably be a challenge. The sob is cruel. > > When I wasn't up to a shower, sometimes I used to > wash my hair in the sink. Now that's a problem, as > is anything that involves bending over, even washing > my face. It's all royally inconvenient and frustrating. > I oxygenate at 98 or 99% on continuous air when I'm > sitting down, but it often falls into the 70's with any > activity, even on 15L. I'm sorry you're having to > experience the exhausting, scary, and sad feeling of > a decline. It's bad enough when it creeps up on you, > but it's especially scary when it hits you fast like a > brick in the head. You are absolutely right to > concentrate on what we CAN still do, though. Our > attitudes help us when all else fails, and I can tell > you have a great one. Hang in there! > > Hugs and blessings, > Gwynne IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Gwynned thank you for those words. It makes me feel better knowing i'm not the only one having this trouble. Yesterday was my first day in the group and afterwards, I was extremely depressed. I had to give it thought and realized after hearing about others working and doing things still with the disease, it made me realize I am further along than I had hoped i was. So far, my attitude and determination has helped me and I guess realizing there will be a point when even that isn't going to save me really sucks. The bathing really is a pain, isn't it? I have always been a very clean person and to see myself opting to go another day before the task of showering really feels disturbing to me especially since i keep doing it! I find if I open a window a little and use warm water rather than hot it doesn't make me cough and choke as much. And yes, I too sit before, during and after. I even shower with a handheld shower head so i can wear the ox in the shower. as a matter of fact, when I finish this I am showering..thank you for the chance to put it off a few more minutes!! if anyone would share their story with me I would appreciate it. Just knowing you are going through similar things made me feel closer to you! So thanks again sweet lady and may god bless you! judybrown63, ipf, 04/07 sc > > Hi Judy. > I can totally relate about the difficulty with baths and > showers. As we progress, more things that take upper > body strength sap our air. But I noticed you said > your 02 is " close by " . Sounds to me like you need to > be wearing it. You're sats are probably dropping. > You're smart to have a stool. Some people dry off > while they're still sitting in the shower. I have to sit > before, during, and after I dry off. Some just put on > a thick terrycloth robe instead. It takes some > experimenting to find out what's best for you, but > it will still probably be a challenge. The sob is cruel. > > When I wasn't up to a shower, sometimes I used to > wash my hair in the sink. Now that's a problem, as > is anything that involves bending over, even washing > my face. It's all royally inconvenient and frustrating. > I oxygenate at 98 or 99% on continuous air when I'm > sitting down, but it often falls into the 70's with any > activity, even on 15L. I'm sorry you're having to > experience the exhausting, scary, and sad feeling of > a decline. It's bad enough when it creeps up on you, > but it's especially scary when it hits you fast like a > brick in the head. You are absolutely right to > concentrate on what we CAN still do, though. Our > attitudes help us when all else fails, and I can tell > you have a great one. Hang in there! > > Hugs and blessings, > Gwynne IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Dear Judy, I've found a way to read people's particular stories by going to the Web site Message Board & using the SEARCH function at the top of the MESSAGES. Just type in a person's ID...eg your own would be 'judybrowne63' & click on SEARCH GO! You will get every posting for that person & you can scroll through & pick up on their story & posting to he Board. Give it a go! in Oz IPF: Fibrotic NSIP/UIP??? Reynauds' May 2007 > >> > Hi Judy.> > I can totally relate about the difficulty with baths and> > showers. As we progress, more things that take upper> > body strength sap our air. But I noticed you said> > your 02 is "close by". Sounds to me like you need to> > be wearing it. You're sats are probably dropping.> > You're smart to have a stool. Some people dry off> > while they're still sitting in the shower. I have to sit> > before, during, and after I dry off. Some just put on> > a thick terrycloth robe instead. It takes some> > experimenting to find out what's best for you, but> > it will still probably be a challenge. The sob is cruel.> > > > When I wasn't up to a shower, sometimes I used to> > wash my hair in the sink. Now that's a problem, as> > is anything that involves bending over, even washing> > my face. It's all royally inconvenient and frustrating.> > I oxygenate at 98 or 99% on continuous air when I'm> > sitting down, but it often falls into the 70's with any> > activity, even on 15L. I'm sorry you're having to> > experience the exhausting, scary, and sad feeling of> > a decline. It's bad enough when it creeps up on you,> > but it's especially scary when it hits you fast like a> > brick in the head. You are absolutely right to> > concentrate on what we CAN still do, though. Our> > attitudes help us when all else fails, and I can tell> > you have a great one. Hang in there!> > > > Hugs and blessings,> > Gwynne IPF 7/04 listed for transplant 3/07 Texas> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Thanks gina, will do! > > > > > > Hi Judy. > > > I can totally relate about the difficulty with baths and > > > showers. As we progress, more things that take upper > > > body strength sap our air. But I noticed you said > > > your 02 is " close by " . Sounds to me like you need to > > > be wearing it. You're sats are probably dropping. > > > You're smart to have a stool. Some people dry off > > > while they're still sitting in the shower. I have to sit > > > before, during, and after I dry off. Some just put on > > > a thick terrycloth robe instead. It takes some > > > experimenting to find out what's best for you, but > > > it will still probably be a challenge. The sob is cruel. > > > > > > When I wasn't up to a shower, sometimes I used to > > > wash my hair in the sink. Now that's a problem, as > > > is anything that involves bending over, even washing > > > my face. It's all royally inconvenient and frustrating. > > > I oxygenate at 98 or 99% on continuous air when I'm > > > sitting down, but it often falls into the 70's with any > > > activity, even on 15L. I'm sorry you're having to > > > experience the exhausting, scary, and sad feeling of > > > a decline. It's bad enough when it creeps up on you, > > > but it's especially scary when it hits you fast like a > > > brick in the head. You are absolutely right to > > > concentrate on what we CAN still do, though. Our > > > attitudes help us when all else fails, and I can tell > > > you have a great one. Hang in there! > > > > > > Hugs and blessings, > > > Gwynne IPF 7/04 listed for transplant 3/07 Texas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Hand held makes a lot of sense, but even if under a shower head, you can still wear the oxygen. These hoses just aren't that fragile. We're at all stages and all have different issues, Judy. But rest assured you'll see incredible strength and courage in those further along than you. The best examples to me are Gwynne and Joyce. I've had the good fortune of meeting Gwynne. What an incredible two and a half hour lunch. Of course she and I knew the facts on each other but had I not, I never would have believed it. Those further along are my role models as I get there. They are also my mentors. Gwynne even led me to a great oxygen provider, and the oxyview glasses may follow. I may follow her to the same transplant center. But I see Joyce at Christmas, I see Gwynne, I gain so much strength and courage for the future. Do I worry about them both? Oh yes, very much. But I feel so blessed to know them. They serve as reminders not to miss any opportunity to make the most of things in my current condition and they serve to let me know that even as it worsens life can have quality and value. I'm glad they share the bad as well. One I want to just hug and support them and let them cry on my shoulders and cry with them. But too, it shows me the whole picture and helps me prepare for reality, not what I wish reality was. While my oxygen requirements are relatively low, I realize, as I think you're sensing on yourself, that I was probably diagnosed later than most. But, all I can do is live in the present and enjoy it as much as possible, then try to do the same at each stage. Our diversity here in every respect is so valuable. > > > > Hi Judy. > > I can totally relate about the difficulty with baths and > > showers. As we progress, more things that take upper > > body strength sap our air. But I noticed you said > > your 02 is " close by " . Sounds to me like you need to > > be wearing it. You're sats are probably dropping. > > You're smart to have a stool. Some people dry off > > while they're still sitting in the shower. I have to sit > > before, during, and after I dry off. Some just put on > > a thick terrycloth robe instead. It takes some > > experimenting to find out what's best for you, but > > it will still probably be a challenge. The sob is cruel. > > > > When I wasn't up to a shower, sometimes I used to > > wash my hair in the sink. Now that's a problem, as > > is anything that involves bending over, even washing > > my face. It's all royally inconvenient and frustrating. > > I oxygenate at 98 or 99% on continuous air when I'm > > sitting down, but it often falls into the 70's with any > > activity, even on 15L. I'm sorry you're having to > > experience the exhausting, scary, and sad feeling of > > a decline. It's bad enough when it creeps up on you, > > but it's especially scary when it hits you fast like a > > brick in the head. You are absolutely right to > > concentrate on what we CAN still do, though. Our > > attitudes help us when all else fails, and I can tell > > you have a great one. Hang in there! > > > > Hugs and blessings, > > Gwynne IPF 7/04 listed for transplant 3/07 Texas > > > Quote Link to comment Share on other sites More sharing options...
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