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AnnMarie
01-06-2008, 08:23 PM
Hi everyone,

I am got the DX. I have a question about fluorescent lighting. It really bothers me and contributes to the rash...oh I hate the nasty rash. Anyway, I am starting to go in remission but I have been avoiding fluorescent light because it contributes to my decline in health. My problem is I am back in college for a new degree in Fine art. I absolutely love it. The problem.... the college studios are lighted w/fluorescent light. Does anyone know how I can continue to stay in studio classes for 6-8 hours at a time and protect myself from this toxic lighting? Does sunscreen help? I will take any suggestions for I really do want to follow my passion which is art. It is a source of comfort for me...except for the darn lighting.

Thanks to you all....Oh yeah, does anyone know if I am eligible for financial aid to pay my college bill due to my new DX?

Ann

Saysusie
01-07-2008, 12:48 PM
When working on my master's degree, I had the same problem. I did use sunscreen as body lotion (I lathered it on everywhere). Minimum SPF of 50! I also wore UV protective sunglasses (yes, I kept them on in class) as well as a hat. I made my instructors aware of my situation and many times, when the weather permitted, the would turn off the overhead lights for me and the class was nice enough to work with just the light coming in from the sun (I still wore protection because we have to be careful with sun exposure also).

I joined the "Disabled Student's Union" and, as such, was allowed many accommodations to help me! If you have such a program in your school, it might be helpful for you to join so that you can get help!!

Peace and Blessings
Saysusie

Faith
01-07-2008, 05:40 PM
Welcome AnnMarie,

I think Saysusie covered it all. I wear Sunscreen 50 and clothing from Coolibar (Suntec and nylon) along with a hat.

Take care,

Faith

AnnMarie
01-08-2008, 06:40 AM
Thank You,

I appreciate your responses and will take your suggestions....even though it is not what I wan to hear....I am still digesting the diagnosis and hate to think that I have to make these changes. I know they are for my own good. I'm still trying to swallow this sour pill of a DX.

With Great Respect,
Ann

Sienna
01-13-2008, 08:21 AM
Hi AnnMarie,

I too have SLE, with the sun & Flourescent sensitivity condition;
sorry to learn you have it too, but real nice to learn of someone
else who is also effected strongly by it & has been having to make
adjustments to help improve it.

I tried to pm you, but my pm is not working yet; & I not able to
visit the board as often as I'd like, ... like I used to years ago. ;-(
So, if you would like to keep in contact; feel free to email me at -
brek452 (AT) yahoo (dot) com

Have a great day & feel good in the meantime; until we can
catch up to each other! Lol

Sincerely,

*Sienna~

==========================


Thank You,

I appreciate your responses and will take your suggestions....even though it is not what I wan to hear....I am still digesting the diagnosis and hate to think that I have to make these changes. I know they are for my own good. I'm still trying to swallow this sour pill of a DX.

With Great Respect,
Ann

Phoenix
03-26-2008, 09:52 PM
I have extreme sensitivity to the sun and fluorescent lighting as well and I get the rash and all that fun stuff. My main problem is that my church building has fluorescent lighting. I go on Sunday morning, Sunday night and Wednesday night and so I spend quite a bit of time there and I don't feel right wearing my usual sunglasses and hat. Any ideas? Thanks. :) I am very new to this all.

Numpty
03-28-2008, 02:53 PM
I have the same problem to the point that after two days at work the rash appears in a diagonal line across my face from where the line of the light falls. I sit almost directly under a strip light at work so it catches me full on the right side and partially on the left.

I tried asking my boss if we could keep the light off and work using our desk lamps but apparently that would be breaking health and safety regulations (~mutters~). So now I have to buy a hat to wear but also had to check they would allow me to wear it.

Did the glasses help lots too Saysuzie? I have really dry eyes but even with the drops/ointment they still always dry out.

Am going to take a look at the Coolibar clothing stuff to see if they have any nice hats!

C x

Saysusie
03-28-2008, 08:30 PM
Hi Numpty;
With reference to using a desk lamp at work, I (with the help of my union) got the ADA involved and my job had to accommodate me in this area. I was allowed to use a desk lamp at my work station until I started working from my home. Even then, when I went into the office for meetings etc. I was still allowed to use a desk lamp.
My doctor wrote a letter to my job explaining whey overhead lighting was detrimental to Lupus Patients..that with the involvement of the ADA pretty much put my job on notice that they were required to make accommodations.

The sunglasses helped me immensely, especially in the classroom where there was no way I was gonna get the entire class to use a desk lamp :lol:
Make sure that you sunglasses have a high factor UV protection. The glasses with the hat served me quite well during the 1-2 hours that I had to be in the classroom. Even now, when we go to certain places, I will not take my sunglasses off. People can think what they want, I don't care!!

I hope that you are able to find some remedies and relief!

Peace and Blessings
Saysusie

sick n tired
03-29-2008, 07:42 AM
Hi Ann marie,

Sunglasses, sunscreen and protective clothing has seemed to help me in the past months. I discovered from Faith that there is a place called coolibar for protective clothing and I have availed myself of it.

I do hope that this can help. Look at it this way...wearing sunglasses in the classroom might make you the cool one. :)

take care,
Karen

jesseyleigh
03-29-2008, 08:37 PM
ive started wearing hats and sunglasses all the time and it helps me a ton! I get the funny she thinks she is too cool looks but i really dont care anymore

sick n tired
03-29-2008, 08:54 PM
Jessey,

When they give you the funny, "she thinks she is too cool", looks, you just give them the "yes, I know I am cool" look right back. 8)

take care,

Karen

sits_inthe_corner
03-30-2008, 01:07 AM
jesseyleigh

Just give a heavy sigh and say sorry I dont give autographs when I'm not working. And walk away hahahahahahaha.

rob
03-30-2008, 04:29 AM
Just tell them that you don't "think" you are too cool, you ARE too cool. This whole thinking thing is for amateurs!

AnnMarie
04-03-2008, 07:32 PM
Thank folks,
hey there are some really cool hats out there w/brims. You were all correct. I look artsy and maybe even fit in better with those youngsters in my class. They think my hats are cool. I also where make up w/sunscreen. I am slowly adjusting.

Ohhhh, but summer is around the corner......I will have to come up with a strategy while bouncing around on the boat. Who knows, maybe a few times out there and me not feeling to good will straighten me out.

Life is a test.

Annmarie

jesseyleigh
04-06-2008, 12:58 AM
Im telling you when i was in college the disabled student union was my best friend. They even got me ergonomic chairs in every class, a tape recorder when i couldn't deal with writing and they controlled the temperature in every classroom, and force professors to give me extensions on work i simply couldn't get done because i couldn't stay up all night to complete it. I bet they can work something out for the classroom light.

And thank goodness i only give autographs at work (they do look at me odd when princess fiona is on the bottom of my credit card receipt and i cant blame them for that)

Amber13
04-09-2008, 07:32 PM
well to protect my eyes i wear my regular glasses which have uv protection, crazy amounts of sunscreen and long sleve shirts with hoods to most of my classes. i also have uv protective tinting on my car windows which provides 300 spf! :D this has made huge improvments in my health and also in that unsightly rash

jesseyleigh
04-09-2008, 08:50 PM
ooo where did you get that tinting??