Guest guest Posted June 4, 2008 Report Share Posted June 4, 2008 Joyce! You are GREAT!! you see humour in grimmest of situations. Hats off to you!! Geeta -- In Breathe-Support , " Joyce " wrote: > > > 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, As I see it there is only one solution- Lucien has to get a big sombrero and dark glasses too. That way you won't feel so alone and everyone will just think you two are movie stars traveling incognito. Sarcoid/PF 3/2006 California 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 5, 2008 Report Share Posted June 5, 2008 joyce what a shame. i agree no sombrero. i am sure we can do better than that. what about a glamorous 40s hollywood style hat with black netting making you look mysterious, aloof and all joan collins rather than a mexican cowboy. you could have the long black gloves as well. of course lucian would have to have a clark gable moustache. i knows its serious and i so get your point about the nose hose being nothing compared with what you are going through. may > > > 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 May, What a wonderful responsefor our dear Queen. Sarcoid/PF 3/2006 California Re: What a tiring day! joycewhat a shame. i agree no sombrero. i am sure we can do betterthan that. what about a glamorous 40s hollywood style hat with black netting making you look mysterious, aloof and all joan collins rather than a mexican cowboy. you could have the long black gloves as well. of course lucian would have to have a clark gable moustache.i knows its serious and i so get your point about the nose hose being nothing compared with what you are going through.may>> > 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.smileyce ntral.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, dear one. I am amazed that you display a sense of humor with all that is going on with our body! But, I imagine there are times when you are alone - it's just too much to bear you think...and some sorrow must flood your senses. I'm sorry for those times (if in deed you have those times - I would imagine I certainly would!)...I really cannot imagine all that you and some others are going through - well the good news is Hillary is caput!! My rats are cute, and fun...the sun is out there somewhere (we've had rainy days all June)...and God has you in his care. Joy in Seattle > > 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...
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