Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 Hi Joyce, I know it's miserable, we need to keep our sense of humor and strength to get through day by day. I Hope you'll feel better soon. Thank you for the little laugh about "not life threatening. Unless I jump off a bridge to escape to the itching" Did you get the skin biopsy results yet? I Hope you get an appointment soon with the Rheumatologist. When I go out, I wear long sleeves and my whole body is covered with clothes, sometimes in winter I wear my sunglasses to avoid the sun. Sometimes, I get these weird questions from people or I'm been stared at, "It's summer time,, why are you covered up?" Because I get a lot of sun from the windows, the blinds are kept closed....until sundown. Now, I look pretty forward to rainy days Take Care & Hugs Irene ---- Original Message ---- To: Breathe-Support Sent: Fri, 30 May 2008 1:51 pm Subject: My Skin Biopsy Report Hi All, (from Mrs. Job) It has been so long, most of you have probably forgotten that I have been waiting for my skin biopsy. I am now covered from the top of my head to my ankles with sores. Not on my face, hands or feet??? And I am itching!!!!!!!! It is not a reaction to Flolan (thank God) but a Lupus Rash, which is not good, but not life threatening. Unless I jump off a bridge to escape the itching. Some of you remember that I was on Cellcept for 9 years and I credit it with saving me from dying. Well, my rhumatologist told me in December, when I was getting so short of breath, etc. that it was evidently not working. So I stopped taking it, but before I could even begin some new treatment, I became so ill with the pulmonary hypertension. Anyway, the theory is that the autoimmune system is now reacting to the absence of Cellcept and just going crazy trying to kill me from the outside in! My pulmonologist is setting me up with a new Rheumatologist who will, I hope get me lined out. In the meantime, I have to stay indoors as much as possible, stay away from windows or any indirect sunlight.....wear heavy suncreen day and night. Wear long sleeves, protective glasses, hat, etc when out. Good grief! What next. But, I went out today, got my new glasses, which are mahvelous.....I look great, sores and all. I had to go shop for all my hypoallergenic blah, blah, blah sunscreen stuff....new make up, lotion....everything. Then rewarded my self by making my husband take me to eat Mexican. Tomorrow, I will stay inside and act sick. Not today. I make a joke of everything, but this IS miserable. I am having to sit on sores on my butt to type this. OUCH! TMI????? 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 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. 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 suppose this is good news? Sort of? Kind of? In a weird way? I mean if it was a reaction to the Flolan (as I had feared) it would mean finding a way to live with it.UGH! At least since it's part of the lupus, it is, at least theoretically, treatable. I will pray that you get in to see the new rheumy asap and they can get this situation under control. Love you! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive My Skin Biopsy Report Hi All, (from Mrs. Job) It has been so long, most of you have probably forgotten that I have been waiting for my skin biopsy. I am now covered from the top of my head to my ankles with sores. Not on my face, hands or feet??? And I am itching!!!!! !!! It is not a reaction to Flolan (thank God) but a Lupus Rash, which is not good, but not life threatening. Unless I jump off a bridge to escape the itching. Some of you remember that I was on Cellcept for 9 years and I credit it with saving me from dying. Well, my rhumatologist told me in December, when I was getting so short of breath, etc. that it was evidently not working. So I stopped taking it, but before I could even begin some new treatment, I became so ill with the pulmonary hypertension. Anyway, the theory is that the autoimmune system is now reacting to the absence of Cellcept and just going crazy trying to kill me from the outside in! My pulmonologist is setting me up with a new Rheumatologist who will, I hope get me lined out. In the meantime, I have to stay indoors as much as possible, stay away from windows or any indirect sunlight.... .wear heavy suncreen day and night. Wear long sleeves, protective glasses, hat, etc when out. Good grief! What next. But, I went out today, got my new glasses, which are mahvelous... ..I look great, sores and all. I had to go shop for all my hypoallergenic blah, blah, blah sunscreen stuff....new make up, lotion....everythin g. Then rewarded my self by making my husband take me to eat Mexican. Tomorrow, I will stay inside and act sick. Not today. I make a joke of everything, but this IS miserable. I am having to sit on sores on my butt to type this. OUCH! TMI????? 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 30, 2008 Report Share Posted May 30, 2008 Joyce... I'm glad at least that you know what the rash is so it can now be treated. I've just never heard of anyone going through what you do. You are certainly Mrs. Job ok. And, you can still joke. What a doll you are! MamaSher, age 69.IPF 3-06,NSIP 4-08. OR.Don't fret about tomorrow, God is already there! My Skin Biopsy Report Hi All, (from Mrs. Job) It has been so long, most of you have probably forgotten that I have been waiting for my skin biopsy. I am now covered from the top of my head to my ankles with sores. Not on my face, hands or feet??? And I am itching!!!!!!!! It is not a reaction to Flolan (thank God) but a Lupus Rash, which is not good, but not life threatening. Unless I jump off a bridge to escape the itching. Some of you remember that I was on Cellcept for 9 years and I credit it with saving me from dying. Well, my rhumatologist told me in December, when I was getting so short of breath, etc. that it was evidently not working. So I stopped taking it, but before I could even begin some new treatment, I became so ill with the pulmonary hypertension. Anyway, the theory is that the autoimmune system is now reacting to the absence of Cellcept and just going crazy trying to kill me from the outside in! My pulmonologist is setting me up with a new Rheumatologist who will, I hope get me lined out. In the meantime, I have to stay indoors as much as possible, stay away from windows or any indirect sunlight.....wear heavy suncreen day and night. Wear long sleeves, protective glasses, hat, etc when out. Good grief! What next. But, I went out today, got my new glasses, which are mahvelous.....I look great, sores and all. I had to go shop for all my hypoallergenic blah, blah, blah sunscreen stuff....new make up, lotion....everything. Then rewarded my self by making my husband take me to eat Mexican. Tomorrow, I will stay inside and act sick. Not today. I make a joke of everything, but this IS miserable. I am having to sit on sores on my butt to type this. OUCH! TMI????? 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 30, 2008 Report Share Posted May 30, 2008 Sher, This is Dr. Joyce's theory as to why this horrible rash....why now.....I came out of the hospital this last time with three surgical incidents in 7 days....on blood thinners. I was very anemic. The doc started me on iron but it takes time. Well, I think my resistance was down. When I came out of the hospital, I had one spot. Now, I have a million. I will do whatever they tell me to do. I want it to stop. Thing is the docs are taking thier time getting to me. I wish they had itchy bugs in thier pants. The doc was supposed to call back yesturday. No problem!!!!! Thanks for caring. I will take all the pity I can get! 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'm glad at least that you know what the rash is so it can now be treated. I've just never heard of anyone going through what you do. You are certainly Mrs. Job ok. And, you can still joke. What a doll you are!> MamaSher, age 69.IPF 3-06,NSIP 4-08. OR.> Don't fret about tomorrow, God is already there!> My Skin Biopsy Report> > > > Hi All, (from Mrs. Job)> > It has been so long, most of you have probably forgotten that I have been waiting for my skin biopsy. I am now covered from the top of my head to my ankles with sores. Not on my face, hands or feet??? > > And I am itching!!!!!!!! > > It is not a reaction to Flolan (thank God) but a Lupus Rash, which is not good, but not life threatening. Unless I jump off a bridge to escape the itching. > > Some of you remember that I was on Cellcept for 9 years and I credit it with saving me from dying. Well, my rhumatologist told me in December, when I was getting so short of breath, etc. that it was evidently not working. So I stopped taking it, but before I could even begin some new treatment, I became so ill with the pulmonary hypertension. > > Anyway, the theory is that the autoimmune system is now reacting to the absence of Cellcept and just going crazy trying to kill me from the outside in! My pulmonologist is setting me up with a new Rheumatologist who will, I hope get me lined out. > > In the meantime, I have to stay indoors as much as possible, stay away from windows or any indirect sunlight.....wear heavy suncreen day and night. Wear long sleeves, protective glasses, hat, etc when out. Good grief! What next. > > But, I went out today, got my new glasses, which are mahvelous.....I look great, sores and all. I had to go shop for all my hypoallergenic blah, blah, blah sunscreen stuff....new make up, lotion....everything. Then rewarded my self by making my husband take me to eat Mexican. > > Tomorrow, I will stay inside and act sick. Not today. > > I make a joke of everything, but this IS miserable. I am having to sit on sores on my butt to type this. OUCH! TMI?????> > 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 30, 2008 Report Share Posted May 30, 2008 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 SeattleJoy/Seattle Interstitual PF-3/2006 PAH-1/2008 HP-2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 You don't have pity my dear you've got my concern and my love. As soon as I hit send, I'm talkin' to Jesus about you. K IllinoisJoyce wrote: Sher, This is Dr. Joyce's theory as to why this horrible rash....why now.....I came out of the hospital this last time with three surgical incidents in 7 days....on blood thinners. I was very anemic. The doc started me on iron but it takes time. Well, I think my resistance was down. When I came out of the hospital, I had one spot. Now, I have a million. I will do whatever they tell me to do. I want it to stop. Thing is the docs are taking thier time getting to me. I wish they had itchy bugs in thier pants. The doc was supposed to call back yesturday. No problem!!!!! Thanks for caring. I will take all the pity I can get! 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'm glad at least that you know what the rash is so it can now be treated. I've just never heard of anyone going through what you do. You are certainly Mrs. Job ok. And, you can still joke. What a doll you are!> MamaSher, age 69.IPF 3-06,NSIP 4-08. OR.> Don't fret about tomorrow, God is already there!> My Skin Biopsy Report> > > > Hi All, (from Mrs. Job)> > It has been so long, most of you have probably forgotten that I have been waiting for my skin biopsy. I am now covered from the top of my head to my ankles with sores. Not on my face, hands or feet??? > > And I am itching!!!!!!!! > > It is not a reaction to Flolan (thank God) but a Lupus Rash, which is not good, but not life threatening. Unless I jump off a bridge to escape the itching. > > Some of you remember that I was on Cellcept for 9 years and I credit it with saving me from dying. Well, my rhumatologist told me in December, when I was getting so short of breath, etc. that it was evidently not working. So I stopped taking it, but before I could even begin some new treatment, I became so ill with the pulmonary hypertension. > > Anyway, the theory is that the autoimmune system is now reacting to the absence of Cellcept and just going crazy trying to kill me from the outside in! My pulmonologist is setting me up with a new Rheumatologist who will, I hope get me lined out. > > In the meantime, I have to stay indoors as much as possible, stay away from windows or any indirect sunlight.....wear heavy suncreen day and night. Wear long sleeves, protective glasses, hat, etc when out. Good grief! What next. > > But, I went out today, got my new glasses, which are mahvelous.....I look great, sores and all. I had to go shop for all my hypoallergenic blah, blah, blah sunscreen stuff....new make up, lotion....everything. Then rewarded my self by making my husband take me to eat Mexican. > > Tomorrow, I will stay inside and act sick. Not today. > > I make a joke of everything, but this IS miserable. I am having to sit on sores on my butt to type this. OUCH! TMI?????> > 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> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 Joy, I don't have to worry about pulling it out, it is falling out. From the lesions, I guess. Then I am worried about what I do to cover the grey???? I am not ready for grey! I know that I am 63, but the person inside me is 40...no grey! When will you find out about your lump? I have been through all that....very scarey. My prayers are with you. You may qualify as Mrs. Job, 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>> 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...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 Joyce, Sallys beauty supply sells a water base color that is a temp. rinse. I use it when I need color and am to stinkin lazy to get'er done.. 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. Joy,I don't have to worry about pulling it out, it is falling out. From the lesions, I guess. Then I am worried about what I do to cover the grey???? I am not ready for grey! I know that I am 63, but the person inside me is 40...no grey!When will you find out about your lump? I have been through all that....very scarey. My prayers are with you. You may qualify as Mrs. Job, 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>> 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...
Guest guest Posted May 30, 2008 Report Share Posted May 30, 2008 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...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 Joyce, I loved the picture! I am so sorry you are so miserable and you truly must feel like Job! Since they now know what it is from I hope they can quickly cure you. You must be going absolutely crazy. Praying that you start getting showered with blessings instead of blisters- --- Joyce wrote: > > [scratching] > <http://www.smileycentral.com/?partner=ZSzeb001_ZSXXXXXX37> > Hi All, > (from Mrs. Job) > > It has been so long, most of you have probably > forgotten that I have > been waiting for my skin biopsy. I am now covered > from the top of my > head to my ankles with sores. Not on my face, hands > or feet??? > > And I am itching!!!!!!!! > > It is not a reaction to Flolan (thank God) but a > Lupus Rash, which is > not good, but not life threatening. Unless I jump > off a bridge to > escape the itching. > > Some of you remember that I was on Cellcept for 9 > years and I credit it > with saving me from dying. Well, my rhumatologist > told me in December, > when I was getting so short of breath, etc. that it > was evidently not > working. So I stopped taking it, but before I could > even begin some new > treatment, I became so ill with the pulmonary > hypertension. > > Anyway, the theory is that the autoimmune system is > now reacting to the > absence of Cellcept and just going crazy trying to > kill me from the > outside in! My pulmonologist is setting me up with > a new Rheumatologist > who will, I hope get me lined out. > > In the meantime, I have to stay indoors as much as > possible, stay away > from windows or any indirect sunlight.....wear heavy > suncreen day and > night. Wear long sleeves, protective glasses, hat, > etc when out. Good > grief! What next. > > But, I went out today, got my new glasses, which are > mahvelous.....I > look great, sores and all. I had to go shop for all > my hypoallergenic > blah, blah, blah sunscreen stuff....new make up, > lotion....everything. > Then rewarded my self by making my husband take me > to eat Mexican. > > Tomorrow, I will stay inside and act sick. Not > today. > > I make a joke of everything, but this IS miserable. > I am having to sit > on sores on my butt to type this. OUCH! TMI????? > > 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 > > > > > > > > > > > <http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb096_Z\ > SXXXXXX37 & utm_id=7924> > Sarcoid/PF 3/2006 California Quote Link to comment Share on other sites More sharing options...
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