I think I've really been in denial with this whole Lupus thing.. I got off my meds for about a week or two and felt and still feel like crap.. I have however, started back on them and Im doing a little better.. I had it in my mind that I wasn't really sick and don't need those meds cuz I was ok before then, well I realized that while I was on my meds I felt much better than I was before the meds, so they must be working and doing something.
I was just sitting in my office with all the lights on and was wondering why my eyes were running so much, and my body was feeling like "BLAH"... I thought hey turn off the top light (Florescent) and turn on your lamps, what a difference it made.. I really need to get myself together and start to better take care of myself.. It's hitting me that I really do have Lupus and I need to do better..
and why I have to turn on the lamps you may ask, because when I told the maintenance crew about my lupus and the florescent lights in my office were bad for me, they instructed me to use lamps, how cruel.. To have to sit in my office with 2 desk lamps and shades drawn is very depressing, but I"ll be ok I suppose.. Any suggestions for what else I can do to put a lil light in my life while i'm at work??
Hi torie. I’m kind of in the same boat-learning more about this and what triggers I have. Now that I think about it, it feels like its everything!!! I’ve only been on meds about a week now and I hear it takes about 2 months or so to really feel better. Keeping my fingers crossed! Good luck to you!
they will consider that a fire hazard.. I'm thinking of calling the maintenance to see if they can order me a different type of light bulb so I can have a lil light in my life while at work..
I went thru a phase like that, I just wasn't going to take my meds anymore. I 'forgot' to take them, yeah right.
I would imagine that your maintenance crew just didn't want to admit that they didn't know what lupus is, and moreover didn't know what to do? Have you researched about lighting, and if there's a shield or something you can use to diffuse the florescent light or alternate bulbs?
Thanks Trisha... I think because I spoke to a new lady she was clueless, i'm waiting on a call from another person I know in that area and hope she can help me..
Taking these meds are really something we have to get use to.. I sat down last night and refilled all my pills and hopefully I"m on the road to doing the right thing.. and Hopefully you have gotten better as well, lol
Trisha said:
Hi Torie,
I went thru a phase like that, I just wasn't going to take my meds anymore. I 'forgot' to take them, yeah right.
I would imagine that your maintenance crew just didn't want to admit that they didn't know what lupus is, and moreover didn't know what to do? Have you researched about lighting, and if there's a shield or something you can use to diffuse the florescent light or alternate bulbs?
Get those fake candles or christmas lights. If you get the fake candles, try not to get the lavender scented. I believe you can get it in the air freshener isle. Christmas lights just seem to bring joy any time of year. I saw where someone took wood or poster board and drilled holes in it and poked the lights throug it and attached the wood or poster to the ceilling. It makes it look like stars. It was really awesome. Maybe a small lighted fish aquarium. They are noted for reducing stress and can be really nice to look at. I hope you find some piece. Stay blessed. Also, some insurance companies cover transitions glasses if recommended by your doctor. Look into it. Good luck.
Most people don't understand that those lights can be a real trigger for us as they simulate daylight, which as we know is bad, bad, bad. However, mention the ADA (American with Disabilities Act) and the fact that they must make (reasonable) accomodations for people with disabilities, which lupus is.
Torie I went through the same thing as you. I’m also very sensitive to fluorescent lighting - my eyes, body and brain. I had a double whammy at work from the fluorescent lighting and we had huge windows letting the sunlight in. It was a daily struggle at work. The fluorescent light directly above my desk was burned out for a long time, but the others still worked. I was grateful to get a break from them when I’d sit at my desk. Only problem was that I was now exposed to the sunlight coming in from the windows. I would cut down the sunlight by partially closing the blinds. My boss didn’t mind, but one of my coworkers did. I hated having to deal with his sulking. Anyway I purchased a desk lamp to see if that would help. I hated having less light to work by. It made things harder not being able to see the details of my work. Then my boss fixed the fluorescent light above my desk so I could see better. Total disaster.
It’s frustrating, the juggling act we have to do when sensitive to fluorescent lighting. I was sensitive to my desk lamp, too which defeated the purpose of switching to a desk lamp. I got fevers, muscle aches, and bad headaches every day at work. I finally gave up and quit. This came soon after he replaced the light above my desk. He really didn’t get that I had a health problem because I looked fine.
I was in denial for the longest time, too. Still am sometimes. I try to explain away every thing my body goes through. I stopped then started taking my plaquenil again. I still like to believe all of this is just going to go away permanently one day. Despite my denial I still see the rheumie regularly.
Anyway here is a link for some shields for fluorescent lighting. Look through it. Maybe your boss would be willing to try using this.
I hope all of you still in the work world will demand that accomadtions are made for you. When I quit my job in '96 I did not go on long term disability that I had paid into for 10 years. It was indicated to me that I would be taken to court, etc if I tried. At the time I was unable to do anything at all as I knew I would have another nervous breakdown (that would have been #3) so I quit and got SSDI after about 1and a 1/2 years. To this day I wish I would have gone back and filed for the long term. They did nothing to accomadate me and when I would request certain things they would do the exact opposite and then it would go around the company that I was a trouble maker. I had to buy my own ergonomic chair, I would be put under circulating vents which always gave me the fibro pain, I would be put next to windows, etc, etc. It was a horrid situation all around and doctors where telling me I did or didn't have lupus too. I gave up. My hubby is not the kind that will help me fight such things. He helps me tons but I am the one who has to do any kind of "fighting" on my own. Please, stand up for your rights, dear fellow lupies!
I brought a couple of floor lamps that take regular bulbs for my office and used them in addition to a desk lamp because my work did the same just took out the bulbs and I was working in the dark.