Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 I would like to thank everyone for their warm welcome. This is my first time posting ever. I'm so excited to find a group that is so friendly and open minded. Well, I'm 29 years old. I have a 3 1/2 year old daughter and a 1 1/2 year old son, a husband, 2 dogs, 1 cat, and 1 fish. I started getting the first signs of Lupus back in 1998 when I was in Nursing school and working the night shift at a hospital. I kept coming home with low grade fevers every morning. Shortly after I started having trouble with my hands. I didn't go see a Rheumatologist until after graduation a year later. He diagnosed me as CTD with +ANA. My doctor is very careful about putting Lupus down on paper- for insurance reasons. He did not start calling it Lupus until this year. After each pregnancy I kept getting worse. I have Raynaud's, Sjogrens, HTN,arthritis, + anticardiolipin, I get the malar rash, and just recently- in the hot summer sun- I have become very photosensitive. I feel like a terrible mother because I cannot take my kids to the park or the zoo. Even with a hat on and loads of sunscreen I still get a flare if I'm outside more than 15 minutes. Even if I wait until 4 pm, I still start feeling bad. Texas is too darn hot!! This is mostly what I am struggling with right now- the sun is EVIL. I do not understand why I am so sensitive to the sun all of a sudden. If anyone knows of any good sun-defense products or of any tricks to ward off UV rays I would be most appreciative. I look foreward to getting to know you all better. I apoligize in advance for any delays in my messaging. I do not get to go online very ofter or for very long. Thanks, Annie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Hello, Annie! I am new here too. I live in Puerto Rico and seem to share the same photosensitivity issues you are facing. I am mom to an 11 years old boy scout into high adventure stuff... and also feel awful because I cannot join the fun and adventure with his crowd. So far, my doctors and husband have been able to explain him what's going on with my health and since he experienced first-hand my last flare ( six months in the hospital) he is quite aware of my limitations. I try to schedule my activities after five pm, the sun is setting here and less likely to hurt me. We had to get permission to put dark limo paper in our car windows. Even though, I try to wear long sleeves and a hat wherever I go, an umbrella is helpful too. As far as sun blocking products for my face I wear Faces from tone and tone Sport is quite effective too. I am in the process of consulting a dermatologist for my rash and I have been told by the other doctors he will be able to prescribe a stronger sun block. There are websites selling special sun protecting clothing, turned out to be too expensive for me but maybe it could be helpful for you. Just try a search on sun protective clothing on the web and you will find lots of references. So far the best course of action for me is try to avoid doing outside stuff in the daytime. Try taking your kids to inside fun places such as Chuck E Cheeses, the movies, as well as parks that are open through the night . As for being a bad mom for not taking your kids to the zoo, I feel bad too and left behind whenever I can't join in the fun but it is better to be able to see him grow and be part of whatever I can than not being here for him at all. And I see that my son has grown into a sensitive and caring young gentleman since my illness has turned more agressive and I know he will be a great caring husband for a lucky girl! ( mom pride, hehehe! ) Just hang on, Annie! Felícita -- 1st post I would like to thank everyone for their warm welcome. This is my first time posting ever. I'm so excited to find a group that is so friendly and open minded. Well, I'm 29 years old. I have a 3 1/2 year old daughter and a 1 1/2 year old son, a husband, 2 dogs, 1 cat, and 1 fish. I started getting the first signs of Lupus back in 1998 when I was in Nursing school and working the night shift at a hospital. I kept coming home with low grade fevers every morning. Shortly after I started having trouble with my hands. I didn't go see a Rheumatologist until after graduation a year later. He diagnosed me as CTD with +ANA. My doctor is very careful about putting Lupus down on paper- for insurance reasons. He did not start calling it Lupus until this year. After each pregnancy I kept getting worse. I have Raynaud's, Sjogrens, HTN,arthritis, + anticardiolipin, I get the malar rash, and just recently- in the hot summer sun- I have become very photosensitive. I feel like a terrible mother because I cannot take my kids to the park or the zoo. Even with a hat on and loads of sunscreen I still get a flare if I'm outside more than 15 minutes. Even if I wait until 4 pm, I still start feeling bad. Texas is too darn hot!! This is mostly what I am struggling with right now- the sun is EVIL. I do not understand why I am so sensitive to the sun all of a sudden. If anyone knows of any good sun-defense products or of any tricks to ward off UV rays I would be most appreciative. I look foreward to getting to know you all better. I apoligize in advance for any delays in my messaging. I do not get to go online very ofter or for very long. Thanks, Annie "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Hello, Annie! I am new here too. I live in Puerto Rico and seem to share the same photosensitivity issues you are facing. I am mom to an 11 years old boy scout into high adventure stuff... and also feel awful because I cannot join the fun and adventure with his crowd. So far, my doctors and husband have been able to explain him what's going on with my health and since he experienced first-hand my last flare ( six months in the hospital) he is quite aware of my limitations. I try to schedule my activities after five pm, the sun is setting here and less likely to hurt me. We had to get permission to put dark limo paper in our car windows. Even though, I try to wear long sleeves and a hat wherever I go, an umbrella is helpful too. As far as sun blocking products for my face I wear Faces from tone and tone Sport is quite effective too. I am in the process of consulting a dermatologist for my rash and I have been told by the other doctors he will be able to prescribe a stronger sun block. There are websites selling special sun protecting clothing, turned out to be too expensive for me but maybe it could be helpful for you. Just try a search on sun protective clothing on the web and you will find lots of references. So far the best course of action for me is try to avoid doing outside stuff in the daytime. Try taking your kids to inside fun places such as Chuck E Cheeses, the movies, as well as parks that are open through the night . As for being a bad mom for not taking your kids to the zoo, I feel bad too and left behind whenever I can't join in the fun but it is better to be able to see him grow and be part of whatever I can than not being here for him at all. And I see that my son has grown into a sensitive and caring young gentleman since my illness has turned more agressive and I know he will be a great caring husband for a lucky girl! ( mom pride, hehehe! ) Just hang on, Annie! Felícita -- 1st post I would like to thank everyone for their warm welcome. This is my first time posting ever. I'm so excited to find a group that is so friendly and open minded. Well, I'm 29 years old. I have a 3 1/2 year old daughter and a 1 1/2 year old son, a husband, 2 dogs, 1 cat, and 1 fish. I started getting the first signs of Lupus back in 1998 when I was in Nursing school and working the night shift at a hospital. I kept coming home with low grade fevers every morning. Shortly after I started having trouble with my hands. I didn't go see a Rheumatologist until after graduation a year later. He diagnosed me as CTD with +ANA. My doctor is very careful about putting Lupus down on paper- for insurance reasons. He did not start calling it Lupus until this year. After each pregnancy I kept getting worse. I have Raynaud's, Sjogrens, HTN,arthritis, + anticardiolipin, I get the malar rash, and just recently- in the hot summer sun- I have become very photosensitive. I feel like a terrible mother because I cannot take my kids to the park or the zoo. Even with a hat on and loads of sunscreen I still get a flare if I'm outside more than 15 minutes. Even if I wait until 4 pm, I still start feeling bad. Texas is too darn hot!! This is mostly what I am struggling with right now- the sun is EVIL. I do not understand why I am so sensitive to the sun all of a sudden. If anyone knows of any good sun-defense products or of any tricks to ward off UV rays I would be most appreciative. I look foreward to getting to know you all better. I apoligize in advance for any delays in my messaging. I do not get to go online very ofter or for very long. Thanks, Annie "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
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