Comments for My Wife Has Lupus http://lupusfamily.com Support for individuals whose family or friends have lupus Sat, 10 Mar 2012 18:55:18 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on Moving Soon by Jeff http://lupusfamily.com/2012/03/moving-soon/comment-page-1/#comment-246554 Jeff Sat, 10 Mar 2012 18:55:18 +0000 http://lupusfamily.com/?p=552#comment-246554 I had to delete around 218,000 spam comments. I'm sorry if I deleted someone's actual comment. I had to delete around 218,000 spam comments. I’m sorry if I deleted someone’s actual comment.

]]> Comment on A Delicate Balance by 28 Below http://lupusfamily.com/2011/08/a-delicate-balance/comment-page-1/#comment-40914 28 Below Sun, 16 Oct 2011 16:20:17 +0000 http://lupusfamily.com/?p=531#comment-40914 A great post and what a wonderful blog. Thanks so much for sharing it. A great post and what a wonderful blog. Thanks so much for sharing it.

]]> Comment on Fluorescent Light Bulbs and Lupus by Jocelyn http://lupusfamily.com/2008/10/fluorescent-light-bulbs-and-lupus/comment-page-1/#comment-39950 Jocelyn Tue, 04 Oct 2011 00:21:04 +0000 http://lupusfamily.com/?p=93#comment-39950 I have Lupus and I am extremely senstive to artificial/indoor light, especially flourescent light. It burns my skin and at times I break out in the malar rash. UV light hurts my joints, causes confusion and memory loss, and makes me very tired and nautious. I read that UVB rays are toxic to some patients with Lupus and I believe it because it feels that way. Working on the computer for an extended length of time makes me very ill, causing headaches, swelling around my eyes, and a rash over my neck and chest ( even though I have a screen that apparently absorbs the UVB rays)and face. . . I rarely go to shopping malls and I try to stay away from large department stores because the extreme lighting can make me break out in a sweat.. I am currently seeking help from the Department of Rehabilitation to find a job since I cannot work under light bulbs. I can work in a room lit by sun light with the overhead lights turned off. The disabiltiy department at my university allowed me to have filters installed on the lights in the classrooms. It made a significant difference ( I still felt some effects from the light but it was an improvement and I felt better). I was able to finish school and graduate, which was huge! . The degree of my photosenstivity varies, but currently it is not too bad. At least I can turn the lights on in my house at night and they don't bother me. (I only turn on the minimal amount necessary to avoid flares). I must find fitlers for my home light bulbs (any suggestions wear I can buy them?) I have spent many evenings sitting in the darkness studying for exams wearing a tiny flashlight strapped to my forehead. But hey, it works! I seem to be more more senstivtive to flouresecent light than sunlight ( sun can make me very ill but it is rare) , although I am very careful in the the sun and I wear sunscreen daily along with a hat and glasses. I aslo wear them indoors. UV blockers on my car windows really help as well. . It was a horrible shock when I developed this degree of photosenstivity three years ago. (I've had Lupus since 2001) and I never imagined I would end up living in a world without UV light . But I have overcome my depression and I am looking forward to finding a job. I am happy today and hopeful. In January, I will be taking Belysta which may reduce the extreme fatigue and photosenstivity. ...Keeping my fingers crossed and will let you know!. I am really comforted by this site and all of your posts. . Jocelyn Los Angeles I have Lupus and I am extremely senstive to artificial/indoor light, especially flourescent light. It burns my skin and at times I break out in the malar rash. UV light hurts my joints, causes confusion and memory loss, and makes me very tired and nautious. I read that UVB rays are toxic to some patients with Lupus and I believe it because it feels that way.
Working on the computer for an extended length of time makes me very ill, causing headaches, swelling around my eyes, and a rash over my neck and chest ( even though I have a screen that apparently absorbs the UVB rays)and face. . .
I rarely go to shopping malls and I try to stay away from large department stores because the extreme lighting can make me break out in a sweat..
I am currently seeking help from the Department of Rehabilitation to find a job since I cannot work under light bulbs. I can work in a room lit by sun light with the overhead lights turned off.

The disabiltiy department at my university allowed me to have filters installed on the lights in the classrooms. It made a significant difference ( I still felt some effects from the light but it was an improvement and I felt better). I was able to finish school and graduate, which was huge! .

The degree of my photosenstivity varies, but currently it is not too bad. At least I can turn the lights on in my house at night and they don’t bother me. (I only turn on the minimal amount necessary to avoid flares). I must find fitlers for my home light bulbs (any suggestions wear I can buy them?) I have spent many evenings sitting in the darkness studying for exams wearing a tiny flashlight strapped to my forehead. But hey, it works!

I seem to be more more senstivtive to flouresecent light than sunlight ( sun can make me very ill but it is rare) , although I am very careful in the the sun and I wear sunscreen daily along with a hat and glasses. I aslo wear them indoors. UV blockers on my car windows really help as well. .
It was a horrible shock when I developed this degree of photosenstivity three years ago. (I’ve had Lupus since 2001) and I never imagined I would end up living in a world without UV light . But I have overcome my depression and I am looking forward to finding a job. I am happy today and hopeful.
In January, I will be taking Belysta which may reduce the extreme fatigue and photosenstivity.
…Keeping my fingers crossed and will let you know!.
I am really comforted by this site and all of your posts. .
Jocelyn
Los Angeles

]]> Comment on Fluorescent Light Bulbs and Lupus by Kelley http://lupusfamily.com/2008/10/fluorescent-light-bulbs-and-lupus/comment-page-1/#comment-39241 Kelley Sat, 24 Sep 2011 01:00:34 +0000 http://lupusfamily.com/?p=93#comment-39241 Tonight I went to an Old Navy store and got so sick standing on line for the register. This particular branch has circular florescent bulbs hanging over EACH register about three feet above the cashier's head. Like many others, the lights give me rashes and panic attacks. It also actually spikes my temperature and gives me drunken-like blurry vision. The skin goes red and it begins. In that moment, I want to jump out of my skin. I mentioned it to the manager. Asked her if she knew that florescent bulbs could actually make people sick. I tried to explain it to her and noted that i wasn't blaming her for the store's condition. She rolled her eyes and attempted to hold back her laughter. I just wanted to inform someone. I've been screaming inside over this issue(and over the fact that most people couldn't care less) Tonight I went to an Old Navy store and got so sick standing on line for the register. This particular branch has circular florescent bulbs hanging over EACH register about three feet above the cashier’s head. Like many others, the lights give me rashes and panic attacks. It also actually spikes my temperature and gives me drunken-like blurry vision. The skin goes red and it begins. In that moment, I want to jump out of my skin. I mentioned it to the manager. Asked her if she knew that florescent bulbs could actually make people sick. I tried to explain it to her and noted that i wasn’t blaming her for the store’s condition. She rolled her eyes and attempted to hold back her laughter. I just wanted to inform someone. I’ve been screaming inside over this issue(and over the fact that most people couldn’t care less)

]]> Comment on A Delicate Balance by Kate http://lupusfamily.com/2011/08/a-delicate-balance/comment-page-1/#comment-38560 Kate Wed, 14 Sep 2011 10:19:39 +0000 http://lupusfamily.com/?p=531#comment-38560 What an insightful post.. You put the "make believe" game into words I couldn't find. There is certainly not enough awareness regarding the effects of lupus on family members and family dynamics, or the importance of spousal support. What an insightful post.. You put the “make believe” game into words I couldn’t find. There is certainly not enough awareness regarding the effects of lupus on family members and family dynamics, or the importance of spousal support.

]]> Comment on Fluorescent Light Bulbs and Lupus by kate http://lupusfamily.com/2008/10/fluorescent-light-bulbs-and-lupus/comment-page-1/#comment-38154 kate Thu, 08 Sep 2011 05:58:20 +0000 http://lupusfamily.com/?p=93#comment-38154 How about the government quit telling us what light bulbs we use? Hello? America? Are you there? How sad to hear of so many who are getting sick trying to follow the ridiculous rules of those who don't even read the bills. I am worried about the mercury and the illness caused by such foolishness. Stop whining and call your representatives and get it together. God help this country. Get strong, get active. How about the government quit telling us what light bulbs we use?
Hello? America?
Are you there?
How sad to hear of so many who are getting sick trying to follow the ridiculous rules of those who don’t even read the bills.
I am worried about the mercury and the illness caused by such foolishness.
Stop whining and call your representatives and get it together.
God help this country.
Get strong, get active.

]]> Comment on Back to Basics by lupusadventurer http://lupusfamily.com/2011/07/back-to-basics/comment-page-1/#comment-37334 lupusadventurer Sun, 28 Aug 2011 05:03:00 +0000 http://lupusfamily.com/?p=515#comment-37334 It's nice to read a husband's perspectives on the lupus experience. I have just started Benlysta also, and will be interested in following you wife's response to her new treatment. Thanks! It’s nice to read a husband’s perspectives on the lupus experience. I have just started Benlysta also, and will be interested in following you wife’s response to her new treatment. Thanks!

]]> Comment on Back to Basics by Denise http://lupusfamily.com/2011/07/back-to-basics/comment-page-1/#comment-36692 Denise Wed, 17 Aug 2011 20:30:20 +0000 http://lupusfamily.com/?p=515#comment-36692 You have a very nice and informative site. I'll be checking back to see how your wife is doing on her new meds. I have an adult son who has been living with most of the symptoms for the past five years. He is unable to keep a job due to fatigue and has not been accepted for SS disability. He is trying to get on state aid and has temporary medical but really needs long term due to the prescriptions he needs. Keep up the good work. You are helping others. You have a very nice and informative site. I’ll be checking back to see how your wife is doing on her new meds. I have an adult son who has been living with most of the symptoms for the past five years. He is unable to keep a job due to fatigue and has not been accepted for SS disability. He is trying to get on state aid and has temporary medical but really needs long term due to the prescriptions he needs.

Keep up the good work. You are helping others.

]]> Comment on Holistic Medicine by Gayathri.S.P http://lupusfamily.com/2008/03/holistic-medicine/comment-page-1/#comment-35679 Gayathri.S.P Sun, 07 Aug 2011 04:53:48 +0000 http://lupusfamily.com/?p=46#comment-35679 Hi, I am Gayathri from India I am also having the SLE it is identified in 2004. Then start my treatment in different systems year(Ayurveda, homeo,etc) then I can feel my symptoms are cure in the natural way then i can select the holistic way and also i am study in the BNYS . thank you for your sharing Hi, I am Gayathri from India I am also having the SLE it is identified in 2004. Then start my treatment in different systems year(Ayurveda, homeo,etc) then I can feel my symptoms are cure in the natural way then i can select the holistic way and also i am study in the BNYS . thank you for your sharing

]]> Comment on Fluorescent Light Bulbs and Lupus by Kay Sumner http://lupusfamily.com/2008/10/fluorescent-light-bulbs-and-lupus/comment-page-1/#comment-34672 Kay Sumner Thu, 21 Jul 2011 04:40:59 +0000 http://lupusfamily.com/?p=93#comment-34672 I had an interesting experience with flurorescent lighting in a lamp this past week. I went to a friend's house to play Mahjongg and sat most of the afternoon by a lamp with a fluorescent bulb in it. My face started to feel hot but no one else complained of the heat so I didn't say anything. Then the lady across the table from me made the comment that my face was extremely red. I decided to turn off the lamp and gradually the redness started to subside. The same thing happened the following week to another lady who sat in the same chair with the same light near her. Neither one of us has been diagnosed with lupus and don't seem to have any specific health problems although we're both close to 70 years old. A couple of years ago my husband put fluorescent bulbs in the fan above my computer. I started having problems with my eyes so had him take them out and my problem went away. I guess one doesn't have to have lupus to have a reaction to those bulbs. I dred the day we can't get incandescent bulbs so I am also stocking up on them. I had an interesting experience with flurorescent lighting in a lamp this past week. I went to a friend’s house to play Mahjongg and sat most of the afternoon by a lamp with a fluorescent bulb in it. My face started to feel hot but no one else complained of the heat so I didn’t say anything. Then the lady across the table from me made the comment that my face was extremely red. I decided to turn off the lamp and gradually the redness started to subside. The same thing happened the following week to another lady who sat in the same chair with the same light near her. Neither one of us has been diagnosed with lupus and don’t seem to have any specific health problems although we’re both close to 70 years old. A couple of years ago my husband put fluorescent bulbs in the fan above my computer. I started having problems with my eyes so had him take them out and my problem went away. I guess one doesn’t have to have lupus to have a reaction to those bulbs. I dred the day we can’t get incandescent bulbs so I am also stocking up on them.

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