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Jennyfoo
06-16-2008, 03:26 PM
EEK! I was in my kitchen, doing dishes, making lunch for the kiddos, cleaning, and my 10 y/o daughter walks in and says, "Yikes, Mom, look at your arms and your neck!" Holy guacamole(as my 5 y/o says)! The rash that I get out in the sun comes out under my flourescent kitchen lighting- bare flourescent bulbs with no covers. I've always hated those lights for the glare and now I have another reason! I was wearing a tank top(only wear those indoors these days) and the rash left very noticeable lines on my shoulders, chest, and back. It's all splotchy with little red pinpricks all over. I need to pull out my winter clothes that I stashed in the back of the closet because my arms are so ugly these days I want to cover them up. :(

Saysusie
06-16-2008, 03:46 PM
Hi Jennyfoo:
Yes, we also have to avoid "hidden" UV rays that are in Fluorescent lighting! So, you also have to be careful when you shop at Walmart or Kmart, and most grocery stores .. or ANY store that uses the fluorescent light fixtures (long rectangle boxes with long tube-shaped light bulbs). Most people are unaware of the fact that fluorescent lighting gives off UV rays, unless the fixture is fitted with a special lens.
So, you should use sunscreen even when you are indoors under fluorescent lighting and keep your body covered in tight weave, loose fitted clothing!

Peace and Blessings
Saysusie

Faith
06-16-2008, 06:38 PM
Hi Jenny & Saysusie,

My Mom just told me that as of 2009 per CNN or ABC, there is a new law taking effect that only flourescent lights can be used as of 2009 and regular bulbs will be discontinued. Flourescent lights have been known to be "more efficient" and "energy saving." Personally, I would rather not be sick and pay for the little bit of electricity.

Ladies, please stock up on regular light bulbs in large amounts. I can't believe this law is actually taking effect especially with the high amount of Lupus patients across the country. How in the world did this get past the LFA?

Take care,

Faith

tintin28
06-16-2008, 08:53 PM
Hello guys,

Well, it is such a coincidence you mentioned that Faith because here in NZ the government announced that by the end of 2009 they are banning the sale of incandescent bulbs. (same in US--funny that)

I have heard that other countries are also moving ahead with this ban and EU and UK has started last year (if I remember right).

Since we can't go outdoors already so what does it mean if we can't even have light sources that are safe in our homes?

I have written to the energy minister here in NZ and I hope I get some response. From what I know, energy saving bulbs do emit a small amount of UV and if we are to live under these lights I suspect I won't be the only one feeling crook.

The other option is to install special UV blocking filters on every light fixture in the house (which sounds really bad to me--maybe look just as horrible).

It just doesn't sound like there is a cheap and safe alternative at this stage for us Lupus people if they banned the light bulb...

Faith
06-17-2008, 12:24 AM
Hi tintin28,

How are those uv tinted windows working? I haven't talked with you in a while. I hope are doing very well. I can't believe our countries are actually doing this. I am simply amazed and in disbelief. My husband thinks I am paranoid because I wear UV clothing when we go shopping at Samsclub or Costco (huge grocery warehouses with UVA flourescent lights). UVA is actually more harmful than UBV (sun's rays) from what I have read up on.

I think you are correct in that there is not a safe and cheap alternative. At work, I have open flourescent lights and my scalp breaks out and hair loss, and I have also noticed I have more headaches with the brightness. I use small lamps in each room with non-flourescent lights at home, otherwise my eyes hurt all the time. I am definately stocking up as much as I can.

I think I will write the LFA (USA) on this issue and see what the response is along with local reps. I believe in going green; as long as it doesn't affect anyones health and wellness.

At times; I think all countries go to polar opposite extremes not realizing how harmful this is to our public (i.e. environmental laws that hamper health and drilling in Colorado and off the California coast due to oil spills, etc.). We, as nations, somehow have to find a middle balance or otherwise alternative lighting and fuels. We are really sinking ourselves if we don't.

Stock up ladies and gentlemen on as much as you possibly can in the next several months. We all need to be proactive for our health.

Take care,

Faith :D

tintin28
06-17-2008, 01:23 AM
Hello Faith,

Yes, I have been away for a while--the semester start was rather busy and one of my colleagues is on sabatical leave so the workload has gone up a bit. I am just glad I can work my normal hours again. I hope you are well too?

The window tinting works wonders--the rash receded completely but I still have a little pink patch on the cheek after getting a spot of sun a few weeks ago (I had like 3-4 seconds of sun--how crap is that?)

I think it is a good idea to write to LFA--I have just written to the lupus organisation over here (it is a heck of a lot smaller than LFA in US). I suspect if you guys can lobby some sort of change in America then small countries like NZ and Australia will follow. I have also written to the radio stations so now it is just a matter of waiting and seeing what happens. I will keep you guys posted.

Faith
06-17-2008, 02:02 AM
Hi tintin,

I am sorry to hear your workload has increased; that's not too fun. Do you not have the Summer (schools) off as we in the States? Make sure you are getting enough rest. Like I am one to speak since it's 2:00 am and can't get to sleep. lol. I am glad to hear you are doing better and, the window tinting works!!

Doing well; I was just recently diagnosed with Sjogren's and APS (anti-phospholipid Syndrome) which causes clotting problems (heart-attacks, mitral valve prolapse). I was expecting, at some point, Sjogrens; but the APS totally took me by surprise. Apparently they both run with Lupus; do auto-immunes ever take a break because I would love to have one!! lol.

After working for 18 years for the same company with 17 years of excellent reviews, my husband was put on a 60 day probation period; it's scarry since all the insurance is through him. I really wish I had cobra'd a couple of years ago. The economy is slow and I think the manager has been told to lay off; he's definately not going to lay off his son who has just had a newborn baby and has worked there for 4 years. If my husband is let go, we both realize he will take a huge cut in pay since he is an office engineer and not a licensed engineer. It's stressing me out, and the fun fibro has been making waves. I apologize if I sound like I am having a pity party; I am afraid of losing everything. Enough of that. I am praying, praying and praying. God doesn't give us more than we can handle, correct? This is just another test of faith that will pass.

I sympathize about the sun; I am the same and very sensitive on my hands, shoulders, arms and legs. Are you on Plaquenil 200 mg 2 per evening? That should help you build up some additional resistance. How much? I don't know since everyone is different.

So far, keep my fingers crossed, I haven't had the mylar rash. You know the script for getting rid of that rash? Any type of cream with Cortisone in it applied 3x daily (Cortaid, Hydrocortisone cream, etc.) or you can ask your doc to call in a rx for Triamcinolone cream 0.1%, applied 2-3x daily. It comes in a huge tub and will last me a full year. Stateside, it is a generic so it's $20.00.

I will definately write stateside to the LFA; it can't hurt. Maybe we can get a rally going against this new law. Let us know what happens on your end. I will make some calls tomorrow. Heading for my generic Temperpedic (comfy bed); I think I can sleep now.

Take care,

Faith :D

Oluwa
06-17-2008, 10:28 AM
No more incandescent lights? Say it isn't so. My body, my eyes have disliked the blue, eye aching, skin rashing buzzing bulbs since I can remember....

The fluorescents cost more, will use less energy, but will the electric company raise their rates to compensate from the profit loss.. :shock:

So, there probably won't be a consumer savings...

I found this..

By Eric Kelderman, www.Stateline.org

What’s the latest bright idea to save energy? Lawmakers in at least seven states want to ban ordinary light bulbs in favor of longer-lasting, energy-efficient compact fluorescents.

Massachusetts Gov. Deval Patrick (D) already has ordered state agencies to fill the light sockets with fluorescents to save electricity and cut power-plant emissions blamed for global warming.

In what could be the beginning of the end for inventor Thomas Alva Edison’s most famous achievement, even his home state of New Jersey has a bill to do away with energy-eating incandescent bulbs in state government buildings within three years. A similar proposal is up for debate in South Carolina. And legislatures in California, Connecticut, North Carolina and Rhode Island are debating bills to phase out traditional light bulbs statewide by 2012 or 2016 as a way to trim consumers' and governments' electricity bills and to help save the planet from global warming.

The incandescent light bulb isn’t on a slippery slope just in the United States. Australia already has banned it by 2010, and the Canadian province of Ontario will do the same by 2012.

The problem is that more than 90 percent of the energy used to light a thin tungsten filament inside common bulbs — using a different material but the same design as Edison in 1879 — goes to waste as excess heat, according to the American Council for an Energy-Efficient Economy (ACEEE). Several inventors actually worked on the light bulb before Edison, but he’s credited with improving it enough for safe, practical use.

Fluorescent lights use electricity to excite a gas inside a glass tube. They consume one-quarter to one-third as much electricity as conventional light bulbs and last up to 10 times longer, according to ACEEE. One downside, though, is they also contain small amounts of toxic mercury and should be properly recycled, the EPA recommends.

With an estimated 4 billion light sockets in the country, the simple gesture of changing a light bulb is seen as a big idea in a world just told by an international scientific panel that human activity is almost certainly heating up the planet. The less electricity a household uses, the less power that must be generated by coal- and natural gas-fired plants that produce carbon dioxide, one of the main gases blamed for global warming.

The California bill, which would ban the sale of most incandescent bulbs in the Golden State by 2012, was passed by the Assembly's Utilities and Commerce Committee on April 23. A competing measure would require all residential lighting in California to be 50 percent more energy-efficient by 2018.

The proposed bans in California, North Carolina and Rhode Island would bar the sale of incandescent bulbs that use 25 watts to 150 watts of electricity but would exclude appliance lighting and several specialty lamps, such as used in traffic signals, on boats or inside mines.

The Connecticut bill would authorize the state Commissioner of Environmental Protection to develop a list of inefficient incandescent bulbs to be banned.

Besides cutting consumers’ electricity bills, fluorescent lighting has potential to cut the nation's carbon-dioxide emissions by as much as 125 billion pounds a year, according to the ACEEE.

Patrick's office estimates that changing 1,000 bulbs in Massachusetts' State House will save $15,000 a year in electricity usage and reduce carbon-dioxide emissions by 56 tons. "It’s a small start, but such small starts add up to big savings — in our pocketbooks, and for our environment,” Patrick said in a statement when announcing his executive order April 18.

States aren’t alone in targeting the light bulb. U.S. Rep. Jane Harman (D-Calif.) also has introduced a bill that would require all bulbs to be as efficient as fluorescents by 2012.

In March, bulb-maker Phillips Lighting Co. announced a partnership with the Natural Resources Defense Council and other environmental groups to advocate measures phasing out incandescent bulbs by 2016.

Eyeing potential profits from energy savings and a growing market of environmentally conscious customers, Home Depot gave away 1 million fluorescent bulbs on Earth Day (April 22), said Jean Niemi, a spokeswoman for the home improvement company. Discount retailer Wal-Mart has a goal of selling 100 million fluorescents a year.

Saysusie
06-17-2008, 11:11 AM
OMG!!! Like we don't have enough to contend with! Now, we are going to be forced to use lighting that actually causes us to flare-up. So, I am going to do some research and/or contact the ADA to see what, if anything, rights we might have in our workplace to not be subjected to lighting that has ill affects on our health!
So, my blood is boiling now. I can understand trying to conserve energy. But, why are our options taken away completely! Are we going to have to get some kind of government waiver in order to use incandescent lights? If this ain't "Big Brother", I'm not sure what is!!!

M. A. H.
Saysuei

KathyW1958
06-17-2008, 11:16 AM
I think that it is terrible that they are going to force us to us flourescent lighting. There aught to be a way to fight this. I am wondering though if opaque shades over the lights help at all against the UV rays put off by them? Anyone have any answers?

thanks,
Kathy

Razzleberry
06-17-2008, 11:44 AM
Faith,

I think you can take out Cobra at any time after your husband is let go and it is good for 18 months ...not a great alternative because it's very expensive but at least it's coverage. Good luck to you ...there is just no company loyalty anymore is there?

Oluwa
06-17-2008, 11:56 AM
I am M.A.H. too. ..Saysusie...absolutely right. There should be an option, I would think....

I think they can ban it in the government sector...but in the residentials....humm. How will it be enforced....Maybe we will have to go underground market to get out incandescent bulbs...illegal, contraband.. smuggling lightbulbs..crazy..:shock:

Busted a jail cell with fluorescent lights for 30 days...

:mad:

Saysusie
06-17-2008, 12:09 PM
Oluwa;
Did you notice that I was so mad that I spelled my own name wrong??
:lol: :rofl:
I'll do 30 days for "illegal incandescent contraband!". Yes, I think I'll start an underground smuggling ring to get incandescent lights to all of my friends. We'll dig tunnels underneath the cities and get a light-bulb railroad thing going. Yes.....I'm working it all out in my mind, as we speak (or type).

Peace and Blessings
Saysusie

Oluwa
06-17-2008, 12:32 PM
I did notice the name typo and thought you were a tad upset....http://tools.digeratimarketing.co.uk/content/lb/smile/mad/mad0214.gif (http://www.fitnessfootwear.com/c-111-crocs.aspx)

Jennyfoo
06-17-2008, 01:03 PM
I've always been a big promoter of flourescent lighting. LOL! I've got nearly all flourescent lighting in my home except for the 2 fan lights that are on dimmers. MY husband will throw a fit, but I'm going back to regular lighting in anything that doesn't have a shade or filter. My kitchen lights are the big problem. There's 4 flourescent fixtures that take special flourescent bulbs- not tube lights- pot lights. Basically, I have to replace the entire fixtures or I have to find some kind of filter and jury-rig some stupid-looking solution that's gonna bug me endlessly because it's not going to look right. LOL!

I still think that flourescent lighting is a wonderful option and that the environment should not pay because there is a small minority of photosensitive people. I've always felt that way despite my personal hatred of flourescent glare that's always caused me migraines. Flourescent lighting is bad for people on the autistic spectrum- it bugs me and my 10 y/o daughter to no end, but we still use them- we both detest our kitchen lights and have begged my DH to replace them for the 3 years we've lived here.

That said, I'm against a ban of incandescent of course. It's ridiculous that the government has to decide what kind of freakin' light bulbs we can and can't use. AUGH!

mnjodette
06-17-2008, 06:43 PM
I wonder if the ADA would factor in here? Perhaps a movement to make sure fluorescent lighting in public places is shielded to protect people from UV rays? Even if they DON'T phase out incandescent bulbs, nearly every public place will probably switch to florescent lighting anyway, just for the energy savings.

The LFA is a good place to start a 'fire' to get some advocacy going. A while back I heard a radio talk show guy comment about the mandatory phasing out of incandescent bulbs and he said "what about all the people that are sensitive to fluorescent lights?" so SOME people DO get it!! Just need to find a forum for making a lot of noise about this! :mad:

I think phone calls to legislators offices work better than letters, but both can't hurt. If there is state legislation pending, those are the legislators to focus on first; then move on the the feds!

Grrrrrr.....just one more thing to stress about, huh?

Jody

Faith
06-17-2008, 11:27 PM
Oluwa,

Thank you for the research and information. I was soooo ticked when my Mom told me about this.

Again, they don't care about people, they just care about going green and being politically correct.

Who is going to set up recycle centers and who is going to pay for it? We are; they will probably set up some type of flourescent tax on the bulbs as they have with soda cans in order to recycle them. If it has toxicity, why are we using them?

What about all the flourescent lights that are thrown in the trash cans around the world, and end up in our ecosystem (the landfill)? If they are toxic; that means that we will eventually be drinking it at some point. Doesn't sound very smart or healthy all in the name of going green and global warming.

I work 3.5 hours per day under flourescent lights that constantly cause migranes, outbreaks on the scalp, joint pain, and hair loss. I hate THEM!!!!!!!!!!!!!! I have asked about covers and was told there are currently no covers available to cover/shield the UVA rays due to the built-in design in the ceiling.

Saysusie; please let us know if there is anyone we can contact in the ADA or local/federal government. Can we petition this? I too can understand conserving energy; but to increase illness in photosensitive people? I am with you on the underground lightbulb railroad. Let me know when to start digging along with coordinates. I noticed your mis-spelling too; I am glad that I am not the only one upset about this ridiculous idea. Please keep us updated; we don't need any more pain and suffering than we already have. Unfortunately, opaque shades will not stop the UVA rays.

Take care,

Faith :mad:

Faith
06-17-2008, 11:50 PM
Hi Razzleberry,

Thank you for the info on Cobra; it is coverage and very expensive. I would probably have to not take meds in order to afford it. Ironic or what? I am worried about not being able to afford my meds (16+). We don't have state insurance as some states do for the chronically ill or pre-existing conditions.

You are right; there is no such thing as company loyalty. I have contacted the local FEHD and made an appt after the 60 days just in case . . . I would definately alledge age discrimination and get a right to sue letter. The only problem is proving discrimination; I understand it is difficult to prove.

It's just too depressing!! I get very upset, mad, and then cry. My husband has worked soo hard and many countless lunch hours (unpaid) in order to get projects out on time and then to get this ugly discriminating review is insane to say the least. After reading the review, one would think he had no experience whatsoever in this field. To top it off, the manager doesn't believe in computers and wants everything on paper first which is extremely time-consuming and inefficient at best.

I was a designer for 10 years and it is technology deficient to not use a computer. An example would be having someone take your computer away and giving you an old typewriter from the 1800s to type up everything on perfect each and every time without spell check, making revisions, etc.

Sorry, I didn't mean to rag on. I am tired, disgusted and upset about this, and then to top it off on the whole entire lightbulb "green" theory based on energy efficiency in the environment while it's okay to continue poisoning ourselves when people throw toxic flourescent lights in trashcans.

Take care,

Faith

Jennyfoo
06-18-2008, 02:13 AM
The problem is people don't realize you're supposed to RECYCLE flourescents through special recycling programs and centers. They're not supposed to be thrown in the trash due to the chemicals including mercury. This info needs to get out there and the idiots(legislators) who are pushing the ban on incandescent lights need to be responsible for making convenient and safe disposal of flourescents as well.

I'll admit, I'm a tree-hugging, sun-worshipping, dirt-loving, animal-loving hippy and humanist. I'm all for whatever can be done to protect the environment as long as it is not to the detriment of the general population's health and safety. I wouldn't expect stores to only make their shelves go 3 feet in height so as to be fair to people with dwarfism, so why should I expect stores to cater to the small minority of people who are photosensitive?

I went shopping at Target today- everywhere here in CA is lit by flourescents. The rash came out bright red again and I got a horrific headache, low-grade fever again, and I've been in tons of pain this evening- after feeling better the past 2 days. I think I'm going to have to start wearing long-sleeved shirts and sun hats indoors when I go out shopping.

Oluwa
06-18-2008, 06:52 AM
I have to weigh in on the impact on the environment and health, going beyond the photosensitivity issues. Though which I believe should be an option for those who are sensitivity. We accommodate many other adversities.

But first, I have to be an advocate for those inflicted with photo sensitive issues....dwarfism and photosensitivity....apples and oranges. One can say can you please reach that for me....can one say could you please turn the lights off while I shop.

I found this that is pretty much my opinion on this topic on banning...while the bulbs are extremely energy-efficient, one problem hasn’t gone away: All CFLs contain mercury, a neurotoxin that can cause kidney and brain damage.

The amount is tiny — about 5 milligrams, or barely enough to cover the tip of a pen — but that is enough to contaminate up to 6,000 gallons of water beyond safe drinking levels, extrapolated from Stanford University research on mercury. Even the latest lamps promoted as “low-mercury” can contaminate more than 1,000 gallons of water beyond safe levels.

There is no disputing that overall, fluorescent bulbs save energy and reduce pollution in general. An average incandescent bulb lasts about 800 to 1,500 hours; a spiral fluorescent bulb can last as long as 10,000 hours. In just more than a year — since the beginning of 2007 — 9 million fluorescent bulbs have been purchased in California, preventing the release of 1.5 billion pounds of carbon dioxide compared with traditional bulbs, according to the U.S. Environmental Protection Agency.

“Using them actually reduces overall emissions to the environment, even though they contain minuscule amounts of mercury in themselves,” said Mark Kohorst, senior manager for environment, health and safety for the National Electrical Manufacturers Association.

Public, agencies ill-informed of risks
As long as the mercury is contained in the bulb, CFLs are perfectly safe. But eventually, any bulbs — even CFLs — break or burn out, and most consumers simply throw them out in the trash, said Ellen Silbergeld, a professor of environmental health sciences at Johns Hopkins University and editor of the journal Environmental Research.

“This is an enormous amount of mercury that’s going to enter the waste stream at present with no preparation for it,” she said.

Manufacturers and the EPA say broken CFLs should be handled carefully and recycled to limit dangerous vapors and the spread of mercury dust. But guidelines for how to do that can be difficult to find, as Brandy Bridges of Ellsworth, Maine, discovered.

“It was just a wiggly bulb that I reached up to change,” Bridges said. “When the bulb hit the floor, it shattered.”

When Bridges began calling around to local government agencies to find out what to do, “I was shocked to see how uninformed literally everyone I spoke to was,” she said. “Even our own poison control operator didn’t know what to tell me.”

The state eventually referred her to a private cleanup firm, which quoted a $2,000 estimate to contain the mercury. After Bridges complained publicly about her predicament, state officials changed their recommendation: Simply throw it in the trash, they said.

Break a bulb? Five steps for cleanup
That was the wrong answer, according to the EPA. It offers a detailed, 11-step procedure you should follow: Air out the room for a quarter of an hour. Wear gloves. Double-bag the refuse. Use duct tape to lift the residue from a carpet. Don’t use a vacuum cleaner, as that will only spread the problem. The next time you vacuum the area, immediately dispose of the vacuum bag.

All people are not careful...all people are not safe, all people are not conscientious of all things that matter..and who says what matters. I do know... there will be an accident just as there has always been. More fluorescent lights, means more chances of that pin drop amount being unaccounted for ....a scary thought. We lose no matter what...but who is to say what is really safer, the safest...Al Gore, FDA...legislators, Mum...

It should be a choice...

Every time one exercises their rights we infringe on anothers...eh? :shock:

What's a girl to do?
Oluwa

Faith
06-18-2008, 09:32 AM
Well said Oluwa,

I think you are totally correct; it should be a choice. Thank you for the additional research on water contaminates, etc.

We are in one of the counties in California, ironically, that are on water rationing; though our water district states we have 50 years of water in storage. I think we all take water for granted; I know I did until it effected our rationing and city development. Water is a very precious resource and we really need to protect it!!!

I guess we are selling our water to Los Angeles and Sacramento (due to the smelt issue) since they are on a short supply. Water is quickly becoming a big issue in California.

In our county, we had three large developers cancel building projects because, by law, they have to provide water for 20 years; it's not currently possible because we are selling all our water to outside counties and then placed on water rationing because of it. It doesn't make any sense; it should be across the board rationing for everyone.

This really hurts our economy; not that I am for a lot of development mind you, though I understand there are other areas that require water and I would never wish anyone to do without water. Development is now being based on how much water can be supplied for 20 years in CA. In Arizona, it's required water be available for 100 years per builder.

I am all for going green as long as it does not effect our health, water and environment in that order. We are huge recyclers in our home, cans, milk and med containers, etc. In our city, we do not have recycle centers for flourescent light bulbs; so there is no choice but to throw them in the trash. I am sure this is the case with many cities. I think Home Depot and Wal-Mart should have recycle centers in their stores since they are handing out millions of flourescent lights.

Our Pastor was recently talking about one of the most valuable resources in the Bible, water, without it no one can survive. We need it to drink and also to harvest crops to eat. It is becoming expensive and rare; we need to protect and treasure it. Throwing mercury flourescent lights in our landfills will not help our health, water supplies and environment.

Take care,

Faith 8)

Oluwa
06-18-2008, 10:57 AM
Faith..

You are welcome..

Hey , are you working at a desk, in a cube..with a direct fluorescent light over head? Maybe they can pull the bulbs and you can use a desk lamp...

Enjoy this day,
Oluwa

Faith
06-18-2008, 12:36 PM
Hi Oluwa,

I work in a computer lab classroom all lit with flourescent lights. I turn half of the room's lights off; but still have exposure. I wish I could take a lamp in and sit it in one spot.

Good idea; I appreciate it. Though, I have bought several lamps at estate sales and placed in different rooms including the bathroomd due to hte lights being too bright and hurting my eyes. The lamps really do help. Sorry for the typos; the brain is not connecting with the fingers today. grrrrr

Take care,

Faith :P

Jennyfoo
06-18-2008, 03:28 PM
Very well said Oluwa, and I am in complete agreement. I know the dwarfism thing was a bit far off, but just an example of how industry is not going to cater to a small minority of people. Besides, if they did, then they'd have people like me and my hubby who are tall(5'10" and 6'3") pissed off at them. LOL! "You can please some of the people some of the time, but you can't please all of the people all of the time." It seems no matter what people and businesses do, they have to step on someone's toes and somebody gets offended these days. IT sucks that we react to flourescents in this way, but what can be done about it? Shopping centers aren't going to cater to us, so all we can do is protect ourselves the best we can with clothing and sunscreen. We certainly can't ask God to turn off the sun for us either. :lol:

One of my kids broke a flourescent bulb last year and it scared the bejeesus out of me. Now we buy ones from Ikea that are wrapped in some kind of outer-layer film that keeps the contents inside if they are broken. I'm switching out my flourescents in my bathroom for the old incandescents and the pot light above my computer desk. Unfortunately, it's up to my hubby to do something about the kitchen lights.

tintin28
06-18-2008, 08:34 PM
Hello everyone,

Faith I am really sad to hear about your husband's job--engineering consultancies are horrible when it comes to treating employees right. (btw, I am an engineer too...what type of engineering is your husband in?). I am hoping that things work out for you and please take care and remember that things have a way of sorting themselves out (somehow). Your health must be the number one priority. :)

As for the light bulb issue--man, I thought I was the only one getting upset by this--now it appears I am not crazy.

I agree with JennyFoo in that I understand the general public is not going to do things to cater for everybody HOWEVER, the issue here (I think) is not whether this is a good environmental move but whether all of us have a basic human right to safe lighting in our own HOMES.

The key problem is that there is NO SAFE ECONOMIC ALTERNATIVE as soon as incandescent bulbs are banned.

Do we have a right to safe lighting in our own homes--like everybody else? Or is it because we have lupus we have suddenly lost that right?

KathyW1958
06-19-2008, 02:22 AM
I have a serious problem with Flourescent lighting too and I have one in my kitchen. We put an opaque shade over it and that helps a lot, plus I keep the light off a lot of the time. I think that it is terrible if they do not give us a choice between flourescent lights and incondescent lights. I wonder if anyone has broght this problem to the government or what. I don't know if the schools have changed or are they still using the florescent lighting without opaque covers, because I know when I was in highschool years ago the lights would make me very sick and everyone thought that it was all in my mind. I did not know anything about Lupus back then in the 70's. I hate going to the grocery stores and department stores because of the lighting in there as I get bad headaches from them. I avoid shopping if I can. Oh well.

Kathy

Faith
06-23-2008, 01:20 AM
Hello everyone:

tintin28, thank you for the kind thoughts and compassion. My husband is an office engineer in civil engineering (development, commercial and residential). What type of engineering are you in? I used to work in mechanical, structural and electrical engineering as a CADD designer. I am hoping and praying everything sorts itself out. I am stressing over not having health insurance.

I have an apptmt to see a neeruologist in July. I am uneasy about it.

I am sad to hear almost everyone has the same flourescent light issue. I am glad that everyone is upset about it.

We all need to make phone calls to our representatives and maybe ask them if the government would like to pay for the repeated dematology appointments, biopsies, and meds to go along with it? That would be an expensive endeavor since there are a lot more of us than senators and council voting on it.

now falling asleep at computer. . . snnnnnnnooozze

Cheryl

TracyDawn
06-25-2008, 09:43 AM
I had to use a lamp in my office for a couple of months after my doctor told me I was never going to feel better or get rid of the awful rash on my back, neck and in my hair (along with my hair falling out) unless I got different lights in my office, since I am sitting in my chair all day long. My boss hated the lamps cause my office is small so it became the bat cave. I did a google for Lupus fluorescent light covers and came up with two good websites. We ordered the "sheets" that you put in the light cover so the bulbs are not affecting me. They have other kinds that go over the tubes but those really make me cringe because of the heat factor. I have had the sheets in here for about a month and a half and I have to say the rash is gone from everywhere! My headaches are better as well. Achiness is still there but I also have Fibro and am finishing my last class to graduate with my associates so lots of stress (adding in a hubby and a 10 year old ;) ). The sheets aren't cheap but they do work. Edited to add: since it was a medical issue and potentially disability related my work paid for the sheets so it never hurts to ask.

Razzleberry
06-25-2008, 11:04 AM
I am thinking that if this is the way things really do go and all incandescent bulbs are banned maybe they'll make them available to people like us via Rx. Could be a good solution for everyone.

Everytime I shop I get a brght red malar rash and I feel so tired so fast. I just thought I was over doing the "getting out and trying to be normal" thing. Maybe it's the lighting instead?

Faith
06-25-2008, 01:37 PM
Hi Razzleberry,

It's the lighting, I have it went I shop at Samsclub. Then the fatigue is worse and the joint pain just nags all day.

It would be awful to have to get an Rx for regular lighting. They would definately be making money off of all of us. lol.

Take care,

Faith

Oluwa
06-25-2008, 07:10 PM
Hi Razzle...

The lighting does....times I am okay with it...but many times I am not. Headaches, eyes burn...nausea. Liken to a good whiff of chemicals...egads.

And how are you and life across our northern border?

Hugs,
Oluwa

Jennyfoo
06-25-2008, 11:35 PM
EEK! I MADE hubby come on in the kitchen and take a look at what those dang lights do to me tonight! I was cleaning in there for about 1/2 hour after the kids went to bed and I'm beet red and splotchy all over my arms, shoulders(tank top)- look like I have a sunburn. The malar rash is beet red on my face and now I've got a whopper of a headache. What will it take to convince him it's worth the $100 or so and few hours of labor to replace those lights? I swear if he doesn't do it in the next week or two, I'm calling an electrician.

KathyW1958
06-26-2008, 02:41 AM
Hi Jenny
I am wondering if you have tried opaque shades over your lights. I have a flourescant light in my kitchen and boy oh boy that thing about drove me nuts. My mother-in-law owned the house before she passed away and we bought the house. I made my husband put an opaque shade over it. The shade seems to help a lot. Before I would get a really bad headache from only being in the kitchen for 10 minutes or so. I am just wondering is all.

Kathy

Jennyfoo
06-26-2008, 09:51 PM
they're can lights- pot lights. There are no covers available that we can find for them- we even asekd the builder when we moved in. IT looks like Hubby will have to pull down the lights and install new ones that take Incandescent bulbs.


I went to Wal-Mart today to get new glasses- YAY for my new transitions lenses that my insurance covers. WOOT! We did a little shopping too and after sitting and walking under flourescents for 2 hours I have scalp sores that feel like blisters in the back where my hear is thinning. They HURT- probably because I didn't know what the heck was up and scratched them. The malar rash is nice and bright- shining through my makeup and my arms look horrible. I really need to get Hubby to get up in the closet on the shelves and get down the winter clothes bin so I can get my long sleeved shirts out. Fun idea. Long sleeve shirts and long pants in 100+ degree Sacramento area summer. GAH!

Saysusie
06-27-2008, 09:31 AM
And don't forget, you should wear a hat when you are in department stores, to protect your head. :lol:

Peace and Blessings
Saysusie

Jennyfoo
06-28-2008, 12:11 AM
ya, I know- I was an idiot and forgot my hat. I think I need to just put one in the car and keep it there. It's bad enough tying to get out of the house with 4 kids, remembering the baby stuff, my cell phone(forgot that when we went out today), etc. It's not uncommon for us to have to go back home because something was forgotten. gah!

mnjodette
06-28-2008, 04:49 AM
My brother is a retired captain on the fire department. He still runs the FD credit union, and his assistant has lupus. He had ALL the fluorescent lights covered which these sleeves to shield her from the UV rays. And this was in the entire FD headquarters (except the engine bays, I expect.) He said it was an ADA thing, and he felt that it was the least they could do to accommodate her. I thought that was pretty forward-thinking. Wish all employers were so sensitive.

Jody

KathyW1958
06-28-2008, 05:36 AM
Hi Jody
I think that it is great of your brother to be thoughtful of the lady that has Lupus and cover the flourescent lighting for her. I had my husband put an opague shade on my kitchen light as it is a flourescant bulb and that has helped tremendously. I wish that the department and grocery stores would do the same, but I doubt that they ever will. I hate shopping, because of the lights. I dislike getting horrendous headaches. I am glad that your brother is that thoughtful and realizes that it is an ADA issue.

Hugs,
Kathy

hatlady
06-28-2008, 09:31 AM
And don't forget, you should wear a hat when you are in department stores, to protect your head. :lol:

Peace and Blessings
Saysusie

THANK YOU Saysusie! I've been so busy lately this is the first chance I've had to see the thread. Thank you for picking up my refrain! 8)

We've switched many of the lights in our house to the flourescent, I'm not quite as badly bothered. But the reading light by my chair MUST remain incadescent - that does bother me.

At work - I have good north light in my office so rarely turn on the lights. At stores - well, I AM Hatlady after all... :wink:

The mandate to go to flourescent is such a mixed blessing. I appreciate the lower energy costs, but what I've read here makes me wonder if we're just switching one devil for another.

Now, I'm off to look up those UV screens for the lights. Sound like a fabulous idea!

Oluwa
07-06-2008, 09:52 PM
Faith....

This was the last place you posted..wondering how you are, how was your 4th.

Thinking of you....

Love..hugs,
Oluwa

Faith
07-07-2008, 01:08 AM
Hi Oluwa,

I have been mia for a while. I have a lot of catching up to do in the next few days. My 4th of July was good; how about yours? My hubby set off fireworks for the kids and we ate watermelon. Yummy!! I am stocking up on lights as much as possible.

How are you doing? You always think of everyone . . . what would we do without you? I don't want to even think about that; too scarry.

I have an appt Tuesday for an MRI of the brain, and next week an appt with a neurologist to review MRI reports. I have had a couple moments where I was light headed and felt as if I was going to pass out. I was there; but not there just hanging on by a thread. I have been diagnosed with Anti-phospholipid Antibody Syndrome or APLS.

Joint aches are worse than normal and muscles and back are hurting more. I think it's due to the hot weather???? I am not complaining by any means as it could be a lot worse. On a good note, I found a new med used to treat Fibromyalgia for break away pain. It's called Soma 375 (generic). It works without making you sleepy; Yippeeeeeee! Wow, what a difference.

How are you doing? I hope you are well and not in a flare. How was your 4th of July? I could picture you like a little kid eating watermellon. How did you celebrate?

Take care,

Faith 8)

Oluwa
07-07-2008, 05:16 AM
Hi Faith...Morning...

Boy it is coming at you from all directions...head hugs.

I hope the MRI doesn't reveal anything at all...that is is just the medication, combination....

I was having bouts of light headiness where I felt very faint. I would lose my balance and go whoa like I was in an earthquake. You know like aftershocks.. I thought it was my pills or hormones. Happened for months and it went away. Hoping yours is a result of something similar..or do you think it is the APLS? I know very little about APLS...

That is great...a new find, pill and with alertness too. I wish I could find one that doesn't produce muddle thinking. My brain, my thinking feels like I am trying to swim through pea soup in the dark to find my words, thoughts...

4th...domestic. Baby Back's on the grill, velvety Yukon mashed potatoes from the stove. Cruised about the area, getting lost. Had an abundance of leftover fireworks from last year...I sat on the porch while my husband snapped them off. No watermelon...though I do enough those. Fresh whole pineapple, was my fresh juicy fruit that day.

I've been swimming about the pool....no woes about IT really. My spin is in spine pain. I took 4 - 500mg Tylenol yesterday, nothing...Popped 3 Darvocet, gone. They say it is inflammation...my previous surgery had cause a straight cervical spine, a bit of instability from the fusion, transferring pain to my middle spine...now I notice the pressure on my lumbar. I had two surgeries prior there.

I feel like my spine is going to collapse and my head's weigh is too much...so I've only posted snippets of me these past few days. Too much pain with head hanging down while arms up typing..wow who knew that bit of movement requires alot of muscles...an orchestrated movement to type....

It's Monday...new week to unfold. I hope it is filled with good things.

Be well...hugs.
Love,
Oluwa

Saysusie
07-08-2008, 11:18 AM
Hatlady;
I think that you and I have been cojoined for years about our hats!! :lol: All shapes, sizes, colors, materials, etc.
How did you do shopping for UV screens for your lights?
I hope all is going well with you. I'm always happy to see your posts when you are able to drop by!

Peace and Blessings
Saysusie

Saysusie
07-11-2008, 09:25 AM
Hi Everyone;
I'm posting the following just FYI

Peace and Blessings
Saysusie

LFA's July 2008 Webchat

Join us for the "UV Light & Lupus" chat with guest expert Dr. Victoria Werth on Thursday, July 17, at 3 p.m. Eastern, and get your questions answered.

Dr. Werth is chief of the Division of Dermatology, at the Philadelphia Veterans Administration Hospital. She is also a Professor of Dermatology and Medicine at the University of Pennsylvania School of Medicine.

Oluwa
07-13-2008, 04:11 PM
Hey Saysusie...

Is there a site, a link to the webchat?

L.,
O.

Faith
07-13-2008, 11:00 PM
Hi ladies,

I emailed my local LFA in CA and received the following reply for the flourescent light issue:

The Lupus Foundation of America’s National office would like to show Members of Congress what impact CFLs and other fluorescent light bulbs have on people with lupus. The LFA Government Relations Department is collecting stories from people that are affected by fluorescent light bulbs so we can share these personal experiences with Congress. If you are interested print and fill out the attached disclaimer and send us your story. Please make sure to include specifics and factual details in your story. Unforunately, I am unable to attch the form; but if you call your nearest LFA office asking for a release and tell your story.

Please feel free to give me a call at 877-225-8787 if you have questions.
Our mailing address is:
Lupus Foundation of America – California Chapter
840 Hinckley Road, Suite 246
Burlingame, CA 94010

laurid8967
07-14-2008, 08:03 AM
Good for you Faith, for taking action...Its only due to people like you that anyone knows of our struggles with this disease.
Thank you,
Lauri

mnjodette
07-23-2008, 09:12 AM
This morning I received this info in an email from the Lupus Foundation of America. Many of you probably did, too, but thought I'd post as an FYI:

"Ban of Current Incandescent Light Bulbs

On December 19, 2007, President Bush signed the Energy Independence and Security Act of 2007 (Public Law No: 110-140). Under the new law, all light bulbs must use 25% to 30% less energy than today’s light bulbs by 2012-2014. Since today’s incandescent light bulbs do not fit the energy efficiency standard, there will be a phase-out of current incandescent light bulbs. The phase-out will start with 100-watt bulbs in January 2012 and end with 40-watt bulbs in January 2014. By 2020, bulbs on the market must meet the 70% efficiency standard.

Compact fluorescent light bulbs (CFLs) already meet the 70% efficiency standard, which means that most public spaces and homes are switching to CFLs. As you may know, some reports suggest that there may be enough UVB radiation in fluorescent light bulbs to cause photosensitivity in people with lupus.

The LFA government relations staff has been working with other groups affected by this legislation to form a coalition: Sjogren’s Syndrome Foundation, National Psoriasis Foundation, Epilepsy Foundation, MAGNUM, and American Academy of Neurology. The LFA government relations staff and this coalition have scheduled meetings on Capitol Hill and are working with the light bulb industry to determine whether a new incandescent light bulb will be released before January 2012."

tintin28
12-08-2008, 01:48 PM
Hi guys,

I am sorry for being out of it for months, I hope all of you are well. I know this is an old thread but thought I should give you guys an update on how the incandescent ban is coming along here in the forgotten corner of the globe.

I have been hassling our MPs regarding the light bulb ban for months and I received no useful response from the leader of the green party. I was told that it is RARE for people with lupus to experience effect from CFLs. (doesn't seem that rare to me if I am affected--or maybe they are saying I am nuts?)

Luckily, instead of a protracted battle, the government has since changed over and the new government has reversed the incandescent bulb ban (thank god). Governments should allow people to choose what they use in their homes--bans like this suggest that they think we are too stupid to make good decisions on our own. I think if there is a viable and eco-friendly alternative everyone will switch over--the reason why there is a reluctance to do so for many years is because the ecobulb technology is not at the stage where it can replace incandescent bulbs.

Hi Faith, how are you? Have things improved since our last post? I am a civil engineer too--but I teach fluid mechanics at the university here. The recession has hit the construction industries hard and many of my students are feeling the pressure.