Guest guest Posted June 4, 2008 Report Share Posted June 4, 2008 Holy Moses Joyce....a sombrero? Or some sort of huge floppy hat. I guess I didn't realize the extent of the no sun restrictions for you. Oy this would be a tough one for me, no sitting on the porch with my coffe in the morning. No hanging out outside with my nieces. I'm so sorry about this huge additional restriction! But once again your amazing sense of humor comes through. I'm glad you're going to be back on the Cellcept. Hopefully now your skin will gradually clear. Consider yourself hugged! Love you tons! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive What a tiring day! I saw my new Rheumatologist at 8:20 a.m. this morning. Driving into the city during rush hour was fun, but not as much fun as getting up early enough to get all my meds and slather itch cream and sunblock all over my body. Anyway, I really like this doc and he was so smart. I really like smart. He is putting me back on Cellcept, said it should not have been stopped in December.... that this whole skin outbreak was a result of that. He is also having me take Plaquenil. I have taken it in the past and had no problems. He was reassuring and kind. Then this afternoon I saw the Dermatologist and got stitches out of my back. Ouch. He said that I should wear sunblock all day every day and reapply when I went out. But try to stay in rooms with no sun access. When I go out, I am supposed to wear a huge hat....like a Sombrero, he said....so that no sun gets on my face or neck. Now, let me tell you that I am not going to wear a Sombrero.... good grief!!! I am in the pits of humiliation as it is. In a wheelchair, tubes running out of my chest and nose, hair falling out, sores all over and now a Sombrero. He said that if there was any light coming into a room, it was poison to me. I am extremely allergic to the radiation from the sun. So, not only can I not go out, I cannot even look out. But, I have to get out to go to doc appts, etc. So, I am supposed to wear a big hat! Mercy! What a spectacle! At least with my big dark glasses and big hat.....no one will recognize me. Except for the fact that my husband will be there. So, anytime you feel self conscious because of your 02 tubing, etc. Please know it can get worse.....much worse. I guess if I wear a Sombrero, I can stop worryng what color my hair is, huh? Good Grief! 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 June 4, 2008 Report Share Posted June 4, 2008 Joyce, you made me laugh a bit about the Sombrero hat. I'm glad you like your new Rheumatologist and you're so right about having a dr who's very smart. It's always great to have a medical professional who knows exactly what he has to do. I hope the stitches didn't hurt so much when he was removing them. Question: Even though you have to stay in rooms, with no access to sunlight, can you at least have the windows open for the breeze and air to come into the room? I Hope my new Rheumatologist that I'm seeing in 2 weeks, has good patient manners.... Hugs Irene PF 03/07 Raynaud's Disease 09/07 Crohn's Disease 03/95 > > > I saw my new Rheumatologist at 8:20 a.m. this morning. Driving into the > city during rush hour was fun, but not as much fun as getting up early > enough to get all my meds and slather itch cream and sunblock all over > my body. > > Anyway, I really like this doc and he was so smart. I really like > smart. He is putting me back on Cellcept, said it should not have been > stopped in December....that this whole skin outbreak was a result of > that. He is also having me take Plaquenil. I have taken it in the past > and had no problems. He was reassuring and kind. > > Then this afternoon I saw the Dermatologist and got stitches out of my > back. Ouch. He said that I should wear sunblock all day every day and > reapply when I went out. But try to stay in rooms with no sun access. > When I go out, I am supposed to wear a huge hat....like a Sombrero, he > said....so that no sun gets on my face or neck. > > Now, let me tell you that I am not going to wear a Sombrero....good > grief!!! I am in the pits of humiliation as it is. In a wheelchair, > tubes running out of my chest and nose, hair falling out, sores all over > and now a Sombrero. > > He said that if there was any light coming into a room, it was poison to > me. I am extremely allergic to the radiation from the sun. So, not > only can I not go out, I cannot even look out. But, I have to get out > to go to doc appts, etc. So, I am supposed to wear a big hat! Mercy! > What a spectacle! At least with my big dark glasses and big hat.....no > one will recognize me. Except for the fact that my husband will be > there. > > So, anytime you feel self conscious because of your 02 tubing, etc. > Please know it can get worse.....much worse. > > I guess if I wear a Sombrero, I can stop worryng what color my hair is, > huh? > > Good Grief! [Cinco De Mayo 3] > <http://www.smileycentral.com/?partner=ZSzeb001_ZSXXXXXX37> > > 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=ZSzeb113_Z\ > SXXXXXX37 & utm_id=7921> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2008 Report Share Posted June 4, 2008 Joyce, you made me laugh a bit about the Sombrero hat. I'm glad you like your new Rheumatologist and you're so right about having a dr who's very smart. It's always great to have a medical professional who knows exactly what he has to do. I hope the stitches didn't hurt so much when he was removing them. Question: Even though you have to stay in rooms, with no access to sunlight, can you at least have the windows open for the breeze and air to come into the room? I Hope my new Rheumatologist that I'm seeing in 2 weeks, has good patient manners.... Hugs Irene PF 03/07 Raynaud's Disease 09/07 Crohn's Disease 03/95 > > > I saw my new Rheumatologist at 8:20 a.m. this morning. Driving into the > city during rush hour was fun, but not as much fun as getting up early > enough to get all my meds and slather itch cream and sunblock all over > my body. > > Anyway, I really like this doc and he was so smart. I really like > smart. He is putting me back on Cellcept, said it should not have been > stopped in December....that this whole skin outbreak was a result of > that. He is also having me take Plaquenil. I have taken it in the past > and had no problems. He was reassuring and kind. > > Then this afternoon I saw the Dermatologist and got stitches out of my > back. Ouch. He said that I should wear sunblock all day every day and > reapply when I went out. But try to stay in rooms with no sun access. > When I go out, I am supposed to wear a huge hat....like a Sombrero, he > said....so that no sun gets on my face or neck. > > Now, let me tell you that I am not going to wear a Sombrero....good > grief!!! I am in the pits of humiliation as it is. In a wheelchair, > tubes running out of my chest and nose, hair falling out, sores all over > and now a Sombrero. > > He said that if there was any light coming into a room, it was poison to > me. I am extremely allergic to the radiation from the sun. So, not > only can I not go out, I cannot even look out. But, I have to get out > to go to doc appts, etc. So, I am supposed to wear a big hat! Mercy! > What a spectacle! At least with my big dark glasses and big hat.....no > one will recognize me. Except for the fact that my husband will be > there. > > So, anytime you feel self conscious because of your 02 tubing, etc. > Please know it can get worse.....much worse. > > I guess if I wear a Sombrero, I can stop worryng what color my hair is, > huh? > > Good Grief! [Cinco De Mayo 3] > <http://www.smileycentral.com/?partner=ZSzeb001_ZSXXXXXX37> > > 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=ZSzeb113_Z\ > SXXXXXX37 & utm_id=7921> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 Joyce... the picture of the sombrero is priceless! As I told you about my grandmother using an umbrella when she went out.......would this possibly be an alternative to the 'sombrero'? I do understand the necessity of avoiding rays...grandma hated going outside. Guess it's sure a personal call. What's worse, the hat or an umbrella? I'm glad you like the Dr you saw. You sure need that. God's Blessing on you today! MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! What a tiring day! I saw my new Rheumatologist at 8:20 a.m. this morning. Driving into the city during rush hour was fun, but not as much fun as getting up early enough to get all my meds and slather itch cream and sunblock all over my body. Anyway, I really like this doc and he was so smart. I really like smart. He is putting me back on Cellcept, said it should not have been stopped in December....that this whole skin outbreak was a result of that. He is also having me take Plaquenil. I have taken it in the past and had no problems. He was reassuring and kind. Then this afternoon I saw the Dermatologist and got stitches out of my back. Ouch. He said that I should wear sunblock all day every day and reapply when I went out. But try to stay in rooms with no sun access. When I go out, I am supposed to wear a huge hat....like a Sombrero, he said....so that no sun gets on my face or neck. Now, let me tell you that I am not going to wear a Sombrero....good grief!!! I am in the pits of humiliation as it is. In a wheelchair, tubes running out of my chest and nose, hair falling out, sores all over and now a Sombrero. He said that if there was any light coming into a room, it was poison to me. I am extremely allergic to the radiation from the sun. So, not only can I not go out, I cannot even look out. But, I have to get out to go to doc appts, etc. So, I am supposed to wear a big hat! Mercy! What a spectacle! At least with my big dark glasses and big hat.....no one will recognize me. Except for the fact that my husband will be there. So, anytime you feel self conscious because of your 02 tubing, etc. Please know it can get worse.....much worse. I guess if I wear a Sombrero, I can stop worryng what color my hair is, huh? Good Grief! 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...
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