Guest guest Posted May 14, 2008 Report Share Posted May 14, 2008 Oh my goodness Joyce!!! What next? You and Lucian continue to be in my prayers daily. Isn't life grand? As says and I say often, you never know what's around the corner. We just have to trust.... Love, Leanne uip 1/03 Illinois > > > Hi All, > > I just wanted you all to know that I am getting a little stronger every > day. I have stopped bleeding from my chest catheter (which worried me > to death). Flolan seems to be working, thank God. > > I mentioned to you all about the rash, think I called them lesions. > They look like splotches of little blisters and they are bright red. > Well, I have about a million now. My back is covered. Some larger than > a quarter. I look like I have the black plague!!!! The pulmo looked at > them when I was there a week ago....said it looked like Eczema. His > secretary made me an appt. with a dermatologist but not until June 5. > Well, I have so many new splotches since then. Last night I e- mailed > the doc to tell him that I had read online that Eczema rash was a side > effect of Flolan (if he knew this last week, he didn't say it) > so.....this morning he e-mailed back to say he is sending out a steroid > cream and that he is calling to see if he can get my appt with the derm > moved up. My big worry is that the spots are beginning to come up > underneath the sterile bandage. I can only change is once a week so how > am I to treat the spots under there with a topical cream??? > > The splotches are spreading onto my arms and legs now ..... and my head > even itches. I just look more and more beautiful every day. My face is > continually red from the flushing. I look so healthy...ha! ha! People > keep telling me how good I am looking. No need for a blusher for me. > Lipstick either....I have nice purple lips! > > Well, the saga continues and so do I. I continue to thank God for every > day. He has pulled me out of the valley of death so many times. I am > just thankful for every day. > > And, I thank God for all of you. > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Queenie, You are just to sweet. My predisone body and skin is almost to much to bare. I don't know how I got this old. I think someone is pulling a really bad joke on me.. oh well. I have made the decision to pack up my clothes that arenot wearable. They were all new when I moved in here so I may just take them to the thrift shop. most of them have only been worn a few times. Don't think I'll ever loose the fluff. ;)I think I really need church in the AM. I have had some anger issues today and I want to react but I will just behave myself. I just hate it when I can't scream when I want. All this turmoil is to upsetting. I just wanted to tell you I'll request prayer for you again in the morning. I am sorry you have so much going on. The itchingwould drive me up the wall. I love you and wish I could sit and visit with you a while. Have a Blessed Sunday.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. Yes, Peggy, they do. Then, because I am on Coumadin, they bleed incessantly. See, that's what I mean....lungs inside, fingernails outside! At least we should look great on the outside. Of course, you are pretty. You always look great.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> > > Joyce:> > > I also had severe clubbing back in June when first diagnosed. Then, > for some reason it disappeared. It has now returned in full force. > I think I could easily spade the garden without a shovel!> > > > Diane > IPF June 07> New Brunswick, Canada> > > Clubbing> > > O.K. while we are on the subject, let me complain. My fingers and > toes continue to club so that now I look freakish. Today, I wore a > pair of shoes from last year. They were so uncomfortable that I kept > pulling them off to see if there was anything stuck down in my shoe. > Finally noticed that my toes all look like ET. Weird!> > 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> > > Ask a question on any topic and get answers from real people. Go to > Yahoo! Answers.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 Joyce, I am 47 now after coloring to cover grey, first for the heck of it. I was auburn. Then I started getting grey about 42. Then I got ill, and now I no longer color at all. I do not mind. I am grey, oh well. It had to get there some day. I actually like it sometimes. I do not worry about coloring it anymore. I soon as I found out I stopped. Love your grey !! It is OK. It might irritate your scalp anyway. It says do not put on open sores or irritated scalp. I used to do hair. God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Re: My Skin Biopsy Report Thanks for the tip. We have to keep one step ahead of Father Time. 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> >> > Joyce, how in the world do you get through each day without > pulling your hair out! I'm so sorry you are so covered in horrible, > itchy bumps. I hope by now you have it under control. Do you? Happy > you enjoyed your Mexican dinner with your husband...how nice.> > Joy in Seattle> >> >> > Joy/Seattle> > Interstitual PF-3/2006> > PAH-1/2008> > HP-2007> >> Quote Link to comment Share on other sites More sharing options...
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