Hi, You probably already know most of this, but if you don't, some of the information may be helpful for lupus folks.
I am somewhat of a web sleuth, and wanted to share some of the things I have found on photosensitivity on the web during the past several weeks of research. For extreme light sensitivity, I found what sun screens work and what don't. I found web pages on how to diagnose photosensitivity as well as several medical articles on the different kinds of photosensitivity. Also web pages on which food or drugs can cause photosensitivity. To protect yourself from the light, you can also purchase sun protection clothing including full body swimwear and hats. In my son's extreme case, I ended up making him a cloth mask to protect him from the sun.
HOW IT BEGAN... My eleven year old son has a case of light sensitivity. He is so sensitive that twenty to forty minutes of exposure to indoor flourescent lights cause an allergic reaction. It began with my son attending a track and field event at school. They left him outside for six hours without sun protection on bleachers, facing the opposite bleachers which were so bright with reflected light he could not even look at them. We still don't know the cause of my son's photosensitivity, but on the bright side, after six weeks, he seems to be getting better. Unfortunately, last week, I experienced a similar allergic reaction to light with swelling in my face and down to my throat (I am also allergic to bugs (bees, wasps, horse flies). Now it is my turn to wear a cloth mask :-(
ON SUN SCREENS AND SUN BLOCKS..... Total Block sun block (SPF 65) made for people with photosensitivity and blocks out all light including visible light, UV light and infrared.. Wearing a normal sun screen (SPF 30) and a straw hat, my son had an allergic reaction to light after only a half an hour under the bright fluorescent lights in the lunchroom. Wearing Total Block and a straw hat, he was able to attend school all day long (6 hours plus) without having a reaction. After trying several sunscreens on my son which did not work, I was a believer in Total Block. You can get info at www.totalblock.com, and I found it to be cheapest from www.dermadoctor.com. (I tried Total Block with my light reaction, but it irritated my already raw, sensitive skin.)
None of the locally available sunscreens worked for my son. I now have a collection of sun screens that do not work for my son: Neutrogena Sensitive Skin (SPF 30), Neutrogen Healthy Defense (SPF 45), Water Babies (SPF 45). I think the reason that they don't work is that they are designed to only block out ultraviolet light and do not block out the visible light. So for people extremely sensitive to visible light, most of the sun screens available at a local store are useless.
Non chemical sun screens containing micronized titanium dioxide and zinc oxide are safest and the least irritating to the skin, particularly for babies. BUT no one sells these sunscreens with a high SPF rating. The only thing I could find locally was Desitin, a zinc oxide diaper rash ointment, needless to say, it is white, goooey, and stinks and my son would not wear it. But the same people who make Total Block are coming out with a product called Cotz (SPF of 58) made of micronized zinc oxide and titanium dioxide. I am anxious to try it. The Total Block folks said Cotz would be coming out in a couple of weeks. Look at www.totalblock.com for its release.
Also on sun screens, I ran across an article that says chemical sunscreens may cause more skin cancer than they prevent. Also, most available sunscreens only block UV light. Many photosensitive reactions occur in UV and in visible light (blues, greens). Total Block blocks out all light, including visible, UV, and infrared. Also according to a paper in Medline, chemical sun screens are one of the leading photoreactive agents causing photosensitivity. (Talk about an oxymoron!!!! Now that I am freaking about drugs and foods that are photoreactive, the last thing I want on my skin is something that could exacerbate my photosensitivity problem.)
SENSITIVITY TO FLOURESCENT LIGHTS... Inside the tube, fluorescent lights are pure ultraviolet (UV). Passing through the coating of the tube, they change to spikes of violet, green and blue. Incandescent lights have most light in the red part of the light spectrum (away from the UV, greens and blue which cause photosensitive reactions). In my quest to relieve my son's condition, I changed out all of the energy saving flourescent bulbs in the house back to the old fashioned incandescent bulbs. That seemed to help.
PROTECTING YOURSELF FROM LIGHTS AND THE SUN... I covered windows with drapes or blankets to block the sunlight. We bought broad brimmed straw hats for the entire family, and UV sunglasses for both of the boys. In addition, I sewed up some cloth masks, so my son could play outside. I used a dark lightweight knit (T-shirt material) for the material. My son wears the mask whenever he goes outside or rides in the car. To go into a building, he takes off the mask, and wears Total Block and a straw hat.
When nothing else works, wear a cloth mask... Now that I too am experiencing light sensitivity, I made some cloth masks for myself. Even now, sitting in the dark, with the light from the monitor shining on my face, I can feel the light on my face. So I put the mask on. I feel safe behind the mask, only holes for my eyes and my mouth. After experiencing a severe allergic reaction and having the left side of my face swell up and the swelling moving down to my throat, I went to trip to the doctor's office for a shot, I know I cannot afford to have too many of the swelling reactions or they will put me on steroids or some other horrible drugs. I have been through bug bites, and I know what happens - the swelling just gets worse with every bug bite and my sensitivity decreases. The exposure to the sun is like being bitten by bees over and over again. The mask seems to be a reasonable alternative to having a severe reaction. Wearing the mask, I can work in the garden or go outside without suffering any ill effects. The only problem is that I look like a terrorist! Well, I hope that my condition goes away very soon. If not, I can only hide out so long at home, and will have to brave the public wearing THE MASK!!! Some people have wheelchairs, some people have crutches, and I guess I will wear a mask.
SUN PROTECTIVE CLOTHING AND HATS.... www.sungrubbies.com has some great sun protection gear. I purchased a neck to ankle swimsuit for my son and some SPF 30 material to make a mask for him so he can go swimming. Sungrubbies also sells Total Block and a waterproof sunblock with an SPF rating of 50, Solbar PF. I bought the Solbar, but have not yet tried the Solbar sunblock. The site is run by a lady with photosensitivity. Looks like they have a lot of good sun protection gear including many broad brimmed hats. Another web site that looked interesting was http://www.chemosavvy.com . Australia is the leader in sun protection technology. The ozone hole over the Antartica makes Australia the skin cancer capitol of the world. A couple of Australian companies make full body swimsuits (called steamer suit): www.stingray.com.au and www.sunshell.com.au (Note www.sungrubbies.com in San Diego sells some of the Sunshell products from the U.S.)
WHAT IS WRONG WITH ME?... All kinds of things can cause photosensitivity: food, drugs, even a lemon orchard. Grocers, chefs, farm workers often get photosensitivity from handling food. People on medication can get photosensitivity from drugs. Look at the FDA's list at www.sunwellnessmag.com/articles/051medlist.pdf for photosensitive food and drugs. For a comprehensive plants and foods, go to http://bodd1.cf.ac.uk/search/all_bodd (Botanical Dermatology Database) and search for photosensitivity.
For my family, we drink lemonade like pop. Lemons and lemon oil are photoreactors. Other culprits could be celery, parsley, limes. The entire citrus family are photoreactors with limes being the worst followed by lemons then oranges. Another possible culprit causing our photosensitivity is sodium nitrate and sodium nitrite used in cured meats like bacon, corned beef, ham, hot dogs. I haven't found any correlation between nitrates and photosensitivity other than nitrate is nasty and generates free oxygen radicals which can be used by a photoreaction. Perhaps, eating home cured meats combined along with nasty well water high in nitrates may have caused some of the photosensitivity in our family. After reading all about arsenic, nitrate and a host of other nasty things in well water, we are buying a reverse osmosis system with ultraviolet treatment that will remove 99% of bacteria and 99% of other nasties like nitrates and arsenic. What is really wrong with us? I still don't know.
WHAT KIND OF PHOTOSENSITIVITY DO I HAVE.. Best Practice of Medicine has an excellent article on diagnosing photosensitivity including a flowchart with boxes and arrows. http://merck.praxis.md/bpm/bpmviewall.asp?page=CPM02DE418 . I printed this article and brought it to my family doctor as well as the dermatologist. (Hey, the doctors don't know everything, and photosensitivity is not that common, and I am going to help them out as much as I can.) Right now, I am awaiting test results on my son for lupus and other photosensitive diseases from teh doctor.
Emedicine.com has many excellent articles written by doctors for doctors.
I have SLE and am very sensitive to sunlight and flourescnet light. I have been using this product for over a year without a reaction. It's called OMBRELLE by L'Oreal. They have SPF 15 all the way up to SPF 60.(the one I use) It was formulated for "sun intolerant" skin. It offers protection from UVA and UVB rays. It contains Titanium Dioxide . SPF 60 is a little harder to find. I live in western Canada and I can always find it at London Drugs.
"Theresa" <ther...@tombraiders.com> wrote in message
> Hi, > You probably already know most of this, but if you don't, some of the > information may be helpful for lupus folks.
> I am somewhat of a web sleuth, and wanted to share some of the things I have > found on photosensitivity on the web during the past several weeks of > research. For extreme light sensitivity, I found what sun screens work and > what don't. I found web pages on how to diagnose photosensitivity as well as > several medical articles on the different kinds of photosensitivity. Also > web pages on which food or drugs can cause photosensitivity. To protect > yourself from the light, you can also purchase sun protection clothing > including full body swimwear and hats. In my son's extreme case, I ended up > making him a cloth mask to protect him from the sun.
> HOW IT BEGAN... > My eleven year old son has a case of light sensitivity. He is so sensitive > that > twenty to forty minutes of exposure to indoor flourescent lights cause an > allergic reaction. It began with my son attending a track and field event > at school. They left him outside for six hours without sun protection on > bleachers, facing the opposite bleachers which were so bright with reflected > light he could not even look at them. > We still don't know the cause of my son's photosensitivity, but on the > bright side, after six weeks, he seems to be getting better. Unfortunately, > last week, I experienced a similar allergic reaction to light with swelling > in my face and down to my throat (I am also allergic to bugs (bees, wasps, > horse flies). Now it is my turn to wear a cloth mask :-(
> ON SUN SCREENS AND SUN BLOCKS..... > Total Block sun block (SPF 65) made for people with photosensitivity and > blocks out all light including visible light, UV light and infrared.. > Wearing a normal sun screen (SPF 30) and a straw hat, my son had an allergic > reaction to light after only a half an hour under the bright fluorescent > lights in the lunchroom. Wearing Total Block and a straw hat, he was able to > attend school all day long (6 hours plus) without having a reaction. After > trying several sunscreens on my son which did not work, I was a believer in > Total Block. You can get info at www.totalblock.com, and I found it to be > cheapest from www.dermadoctor.com. (I tried Total Block with my light > reaction, but it irritated my already raw, sensitive skin.)
> None of the locally available sunscreens worked for my son. I now have a > collection of sun screens that do not work for my son: Neutrogena Sensitive > Skin (SPF 30), Neutrogen Healthy Defense (SPF 45), Water Babies (SPF 45). I > think the reason that they don't work is that they are designed to only > block out ultraviolet light and do not block out the visible light. So for > people extremely sensitive to visible light, most of the sun screens > available at a local store are useless.
> Non chemical sun screens containing micronized titanium dioxide and zinc > oxide are safest and the least irritating to the skin, particularly for > babies. BUT no one sells these sunscreens with a high SPF rating. The only > thing I could find locally was Desitin, a zinc oxide diaper rash ointment, > needless to say, it is white, goooey, and stinks and my son would not wear > it. But the same people who make Total Block are coming out with a product > called Cotz (SPF of 58) made of micronized zinc oxide and titanium dioxide. > I am anxious to try it. The Total Block folks said Cotz would be coming out > in a couple of weeks. Look at www.totalblock.com for its release.
> Also on sun screens, I ran across an article that says chemical sunscreens > may cause more skin cancer than they prevent. Also, most available > sunscreens only block UV light. Many photosensitive reactions occur in UV > and in visible light (blues, greens). Total Block blocks out all light, > including visible, UV, and infrared. Also according to a paper in Medline, > chemical sun screens are one of the leading photoreactive agents causing > photosensitivity. (Talk about an oxymoron!!!! Now that I am freaking about > drugs and foods that are photoreactive, the last thing I want on my skin is > something that could exacerbate my photosensitivity problem.)
> SENSITIVITY TO FLOURESCENT LIGHTS... > Inside the tube, fluorescent lights are pure ultraviolet (UV). Passing > through the coating of the tube, they change to spikes of violet, green and > blue. Incandescent lights have most light in the red part of the light > spectrum (away from the UV, greens and blue which cause photosensitive > reactions). In my quest to relieve my son's condition, I changed out all of > the energy saving flourescent bulbs in the house back to the old fashioned > incandescent bulbs. That seemed to help.
> PROTECTING YOURSELF FROM LIGHTS AND THE SUN... > I covered windows with drapes or blankets to block the sunlight. We bought > broad brimmed straw hats for the entire family, and UV sunglasses for both > of the boys. In addition, I sewed up some cloth masks, so my son could play > outside. I used a dark lightweight knit (T-shirt material) for the material. > My son wears the mask whenever he goes outside or rides in the car. To go > into a building, he takes off the mask, and wears Total Block and a straw > hat.
> When nothing else works, wear a cloth mask... > Now that I too am experiencing light sensitivity, I made some cloth masks > for myself. Even now, sitting in the dark, with the light from the monitor > shining on my face, I can feel the light on my face. So I put the mask on. I > feel safe behind the mask, only holes for my eyes and my mouth. After > experiencing a severe allergic reaction and having the left side of my face > swell up and the swelling moving down to my throat, I went to trip to the > doctor's office for a shot, I know I cannot afford to have too many of the > swelling reactions or they will put me on steroids or some other horrible > drugs. I have been through bug bites, and I know what happens - the swelling > just gets worse with every bug bite and my sensitivity decreases. The > exposure to the sun is like being bitten by bees over and over again. The > mask seems to be a reasonable alternative to having a severe reaction. > Wearing the mask, I can work in the garden or go outside without suffering > any ill effects. The only problem is that I look like a terrorist! > Well, I hope that my condition goes away very soon. If not, I can only hide > out so long at home, and will have to brave the public wearing THE MASK!!! > Some people have wheelchairs, some people have crutches, and I guess I will > wear a mask.
> SUN PROTECTIVE CLOTHING AND HATS.... > www.sungrubbies.com has some great sun protection gear. I purchased a neck > to ankle swimsuit for my son and some SPF 30 material to make a mask for him > so he can go swimming. Sungrubbies also sells Total Block and a waterproof > sunblock with an SPF rating of 50, Solbar PF. I bought the Solbar, but have > not yet tried the Solbar sunblock. The site is run by a lady with > photosensitivity. Looks like they have a lot of good sun protection gear > including many broad brimmed hats. Another web site that looked interesting > was http://www.chemosavvy.com . Australia is the leader in sun protection > technology. The ozone hole over the Antartica makes Australia the skin > cancer capitol of the world. A couple of Australian companies make full body > swimsuits (called steamer suit): www.stingray.com.au and www.sunshell.com.au > (Note www.sungrubbies.com in San Diego sells some of the Sunshell products > from the U.S.)
> WHAT IS WRONG WITH ME?... > All kinds of things can cause photosensitivity: food, drugs, even a lemon > orchard. Grocers, chefs, farm workers often get photosensitivity from > handling food. People on medication can get photosensitivity from drugs. > Look at the FDA's list at www.sunwellnessmag.com/articles/051medlist.pdf for > photosensitive food and drugs. For a comprehensive plants and foods, go to > http://bodd1.cf.ac.uk/search/all_bodd (Botanical Dermatology Database) and > search for photosensitivity.
> For my family, we drink lemonade like pop. Lemons and lemon oil are > photoreactors. Other culprits could be celery, parsley, limes. The entire > citrus family are photoreactors with limes being the worst followed by > lemons then oranges. Another possible culprit causing our photosensitivity > is sodium nitrate and sodium nitrite used in cured meats like bacon, corned > beef, ham, hot dogs. I haven't found any correlation between nitrates and > photosensitivity other than nitrate is nasty and generates free oxygen > radicals which can be used by a photoreaction. Perhaps, eating home cured > meats combined along with nasty well water high in nitrates may have caused > some of the photosensitivity in our family. After reading all about arsenic, > nitrate and a host of other nasty things in well water, we are buying a > reverse osmosis system with ultraviolet treatment that will remove 99% of > bacteria and 99% of other nasties like nitrates and arsenic. What is really > wrong with us? I still don't know.
> WHAT KIND OF PHOTOSENSITIVITY DO I HAVE.. > Best Practice of Medicine has an excellent article on diagnosing > photosensitivity including a flowchart with boxes and arrows. > http://merck.praxis.md/bpm/bpmviewall.asp?page=CPM02DE418 . I printed this
That was fascinating reading! For years after spending hours gardening at a time always wondered why I felt so *drunk* and heat stroked etc ... my tolerance for sunlight has dramatically decreased over time to the point of even hanging a few bits of washing out on the line now is dicey. In Australia where I am it is pretty bright with lots of UV rays too (hole in the ozone layer and all that). Can't remember a time I didn't go outside with my sunglasses on too, use polarised lenses that give good visibility in even in low light. The food and photosensitivity link is interesting, will be making some enquiries into that now!
Thanks Mike, I checked out your tip on Ombrelle SPF 60 sun block. From http://www.ombrelle.com/en/produit/60.asp "...permanent or temporary skin sensitivity. Specifically formulated for sun-intolerant skin, Ombrelle SPF 60 combines a high content of the best known filters, including L'Oréal's patented Mexoryl® SX and stabilized Parsol® 1789 (Avobenzone) to deliver maximum UVA/UVB protection. It provides protection throughout the UVA range, as well as 60 times your natural defense against UVB rays with Titanium Dioxide, a physical sunblock. "
It contains a lot of titanium dioxide to provide 60 times the protection against UVB. Titanium Dioxide is a physical sun block blocks out everything (UV, visible and infrared) and that is what I am looking for. I think I will order some. :-) (I tried Total Block sun block today for a trip to the store, but it bothers my skin. I just washed it off.)
This is another sun block that looked promising from the UK. http://www.auravita.com/products/LORE11470.asp Ambre Solaire Total Screen By L'Oreal (maybe the same product?) Sun Protection Factor 60 for Sun Intolerant Skin; anti uva-uvb; photostable; water resistant; hypoallergenic; fragrance free
Also here is a page on which sun screen ingredients block what wavelengths of light. http://www.dermatology.org/skintherapy/stl0205.html Most sunscreen ingredients only work on the UV bands of light. Only physical sunscreens, titanium dioxide and zinc oxide work on the UV and visible bands of light (290-700 nm). UVB (290-320nm) UVA (320-400 nm) visible (violet to red) or 400 to 700 nm (some photosensitivities occur in blue and green.)
Sunscreen substances that can cause photosensitivity *benzophenones (Arimis, Clinique) cinnamates (Arimis, Estee Lauder) dioxbenzone (Solbar Plus) oxybenzone (Eclipse, Presun, Shade) PABA (PreSun) *PABA esters (Block Out, Sea & Ski, Eclipse)
Here is a study of people using sunscreen and not using sunscreen (SPF15). http://www.dnd.ca/health/hs_staff_sites/drug_review_fed/Engraph/DR_Su... ssp_e.asp "The investigators' conclusion was that "there was no harmful effect of daily use of sunscreen in the medium-term study". While they found no harmful effects, there was no clear benefit (i.e. reduction in skin cancer). " Argghs! Although I am sure using sunscreens with SPF 60 ratings have benefits, most sunscreens fail to prevent skin cancer.
Hi Sal, Glad to help out and thank goodness for the web, because if we only listened to our doctors, we would all think we were crazy. (My own family doctor would not believe me about my son. A major fight between the school and my doctor. I threatened to either fire my doctor or get my son kicked out of school. It worked, I got the note from teh doctor for the school that I needed. My doctor is really an okay guy, but this was way out of his field. Even the dermatologist was more than happy to read the article on how to diagnose photosensitivity. ) Remember you can eliminate the light or the photoallergen. If you can't eliminate the allergen, eliminate the light. If you have a photosensitive disease, you may have to learn to live with it. As I have told my son, "You may have to learn to live with it." He was not very keen on the idea, but he is not very keen on being a shut in and neither am I.
For real life experiences, do a search on www.google.com and pick the newsgroup tab.
Also look a phytophotodermatitis or something like that, it lists plants and foods that cause reactions. But most food/plant reactions are topical (i.e. apply lemon juice or lime juice to skin and get a reaction like discolored skin. I.e. Parents squeeze lime juice then touch their kids and are accused of child abuse from the finger marks left on the kid's skin.) Both my doctors scoff at getting a photoreaction from drinking lemonade. But, they could be wrong. I am still at a loss as to what is causing our reactions. Perhaps a combination of drinking lemonade and eating cured meats???
While I am at it, here is another sun block that looks interesting. LA ROCHE-POSAY ANTHELIOS "L" TOTAL BLOCK. I have not tried it.
"Anthelios "L" 60 SPF is total sunblock lotion. It has been rigorously formulated to ensure an extremely high level of protective from the sun, thanks to an original, patented filter, whose protective action corresponds exactly to the UVA rays which trigger reaction, and a combination of UVB-UVA filters. The regular use of this product over the years may help reduce the chance of premature aging of the skin. 50mL. Active ingredients: 4-methylbenzylidene camphor 5%, titanium dioxide 4%, butyl methoxydibenzoylmethane (PARSOL 1789) 3%, terephthalylidene dicamphor sulfonic acid (mexoryl SX) 3.3%. Non-medicinal ingredients: water, cyclopentasiloxane, C12-15 alkyl benzoate, glyerine, sorbitol, triethanolamine, aluminum starch octenyl succinate, octyl cocoate, stearic acid, PEG-100 stearate, PVP/eicosene copolymer, potassium cetyl phosphate, glyeryl sterate."
>It contains a lot of titanium dioxide to provide 60 times the protection >against UVB. Titanium Dioxide is a physical sun block blocks out >everything (UV, visible and infrared) and that is what I am looking for. I >think I will order some. :-) >(I tried Total Block sun block today for a trip to the store, but it bothers >my skin. I just washed it off.)
You can buy plain, cosmetic grade titanium dioxide from places that cater to soap and lotion makers. I mix a small amount of the pigment with water (it only takes a few drops), then add it to a lotion base that I have already tried and know is safe (in my case, Curel unscented). Done this way, it's not goopy, though if you add too much pigment it'll look like you're wearing clown white. ;}
This particular place also has really good prices on nothing-added jojoba oil.
-- Lee M.Thompson-Herbert l...@retro.com KoX 1995, SP4 Head Muso, White Rats Morris Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. "A head-on collision between Morticia Adams and Martha Stewart"
Theresa wrote: > []. In my son's extreme case, I ended up > making him a cloth mask to protect him from the sun.
> HOW IT BEGAN... > My eleven year old son has a case of light sensitivity. He is so sensitive > that > twenty to forty minutes of exposure to indoor flourescent lights cause an > allergic reaction. It began with my son attending a track and field event > at school. They left him outside for six hours without sun protection on > bleachers, facing the opposite bleachers which were so bright with reflected > light he could not even look at them. > We still don't know the cause of my son's photosensitivity, but on the > bright side, after six weeks, he seems to be getting better. Unfortunately, > last week, I experienced a similar allergic reaction to light with swelling > in my face and down to my throat (I am also allergic to bugs (bees, wasps, > horse flies). []
All good but shouldn't you and he be seeking diagnosis first? What if you both have Lupus or some of the other sun-sensitive illnesses (that can also affect/attack the organs)? J- wishing she'd saved the list she posted here once.
Just wanted to point out that the latest LFA newsletter is *full* of excellent photosensitivity information. If you don't have it, you might try to get a copy from your chapter or if you're overseas (or not) you could probably talk some unwitting kitty cat into sending a copy. :-) I can probably get a few extras from the office and send them out...
> I'll add more of my respected opinion later <SEG>
> Just wanted to point out that the latest LFA newsletter is *full* of > excellent photosensitivity information. If you don't have it, you > might try to get a copy from your chapter or if you're overseas (or > not) you could probably talk some unwitting kitty cat into sending a > copy. :-) I can probably get a few extras from the office and send > them out...
Thanks! It does seem odd with all of the companies making sunscreen that we have to resort to making our own. For home made sunscreen, I ran across this.
Home Made Sun Block- To make your own sun-block You will need USP grade titanium oxide or zinc oxide available from compounding pharmacies. You will also need some almond oil (or other good oil) and beeswax. Make in proportion of 1 cup oil to 1 oz beeswax and 1-2 Tablespoons zinc or titanium oxide. Heat the oil just enough to melt the wax (grate or chop it first), then add the titanium or zinc oxide. From http://www.ultrasw.com/cheryl/Products.htm
I did some more searching and found Mustela Total sun protection lotion, a mineral sunscreen, SPF 25. It uses zinc oxide (5%) and titanium dioxide (9.8%) as physical blockers. Hypoallergenic and sold in many baby stores. Information is at www.mustela.com and I was able to find a local store. I just put it on my face and so far it feels good and doesn't irritate my already irritated skin. (I hope it works, because at the rate I am buying sun screen, I will be able to open my own store of slightly used sun screens. :-) )
Mustela Total Sun Protection Lotion SPF 25 (Pricey, with tax, almost $20 US for 4 oz) INGREDIENTS: Water, pentaerythrityl tetraethylhexanoate, titanium dioxide, cyclomethicone, zinc oxide, C12-15 alkyl benzoate, glycerin, dicaprylyl ether, cyclopentasiloxane, ethylhexyl dimethicone ethoxy glucoside, propylene glycol diethylhexanoate, sodium chloride, PEG-45/dodecyl glycol copolymer, PEG-30 dipolyhydroxystearate, glycine soja (soybean) oil unsaponifiables, dextrin palmitate, phenoxyethanol, C1 77492, hydroxypropyl guar, aloe barbadensis leaf extract, iron oxide, methylparaben, dimethicone/vinyldimethicone crosspolymer, disodium edta, zinc gluconate, butyparaben, tartaric acid, ethylparaben, propylparaben, C1 77491
My son went in for about five tests to rule out things like lupus and probably some of the other things you mentioned. We should find out the test results at the next doctor's appointment.
I have been very frustrated since it all began. It took four days to figure out what was happening to my son, by then the doctor had him on Dexamethasone (impacts his immune system for twelve months). On Dex, my son felt like he was going to vomit and the emergency room doctor took him off of the steroids. We, not the doctor, figured out the photosensitivity, and then I needed a note from school and the doctor wouldn't even believe me (our family doctor since the kids were born!) I had to threaten him that we would go somewhere else. I have spent a great deal of time on teh web trying to learn about what is going on with my son. I have been through bad doctors with my back, suffering for four years because I believed the damned doctor. After seeing a doctor who knew what they were doing, I now live without pain most of the time (except for when I use shovels too much). I won't let the same thing happen with my son. I truly believe learning as much or more about what is going on as I can. When seeing the dermatologist, the sun block (Total Block) I had found on the web was better than the dermatologist was using. Anyway, enough ranting about doctors. Theresa
I too got my 2 copies of the newsletter and it is excellent photsensitivity issues and skin involvements... everyone should support theirs and other countries' support groups in order to get the money raised toward research and the like! I'll get off my pedestal now ;)
> On Thu, 13 Jun 2002 19:26:16 -0700, "JRogow" <JRo...@Ridgenet.net> > wrote:
> >If you can't you have my address, or did you toss it?
> pro'lly. but don't send it just yet - let me try to scan and dig > around in my "files" (a bag in the closet) for your addy.
I had a chance to educate some people about Lupus today.
Also, unfortunately, I also found out that a friend lost her Lupus sister last winter. They are native American, one of the most susceptible groups for this disease.
I slathered #60 sunblock this morning, it seems to have worked.
I'm shooting better than I had thought, but still towards the bottom of my class, and definitely the lowest in our posse (it's full of some of the best men shooters, I'm the only gal).
You'd laugh to see me with my full garb - and a bright red Solumbra golf umbrella! It clashes with my hat, but, oh well<g>.
Fortunately, every stage has a sun shelter, so I only need the bumbershoot between stages or walking to the car.
My back hurts and I'm really tired, we're going to a cowboy poet event tonight, so I'm gonna take a nap now.
On Fri, 14 Jun 2002 17:04:58 -0700, "JRogow" <JRo...@Ridgenet.net> wrote:
>I had a chance to educate some people about Lupus today.
Good.
>Also, unfortunately, I also found out that a friend lost her Lupus sister >last winter. They are native American, one of the most susceptible >groups for this disease.
:-( I'm sorry. while it's not the norm - it's still a tough reality to face sometimes with this DD.
>I slathered #60 sunblock this morning, it seems to have worked.
Gut again.
>I'm shooting better than I had thought, but still towards the bottom of my >class, and definitely the lowest in our posse (it's full of some of the best >men shooters, I'm the only gal).
so - if you were in Scotland you'd be tossing the caber (sp?) right? :)
> On Fri, 14 Jun 2002 17:04:58 -0700, "JRogow" <JRo...@Ridgenet.net> > wrote:
> >I had a chance to educate some people about Lupus today.
> Good.
> >Also, unfortunately, I also found out that a friend lost her Lupus sister > >last winter. They are native American, one of the most susceptible > >groups for this disease.
> :-( I'm sorry. while it's not the norm - it's still a tough reality > to face sometimes with this DD.
I know - but she was doing so well last time I saw her.
> >I slathered #60 sunblock this morning, it seems to have worked.
> Gut again.
Yep, I'm hooked on the stuff - although I sorta missed hearing my skin saute.
> >I'm shooting better than I had thought, but still towards the bottom of my > >class, and definitely the lowest in our posse (it's full of some of the best > >men shooters, I'm the only gal).
> so - if you were in Scotland you'd be tossing the caber (sp?) right? > :)
> Glad that your scores are better than you thought...but as long as you are > having fun that is what counts.
> Hope you had a great time at the cowboy poet event.
It was wonderful, he (Richard Elloyan) is fantastic. A truly magic evening.
I'm really fighting for the lowest scores - there's another gal who is having a bad shoot, she is neck and neck with me for the "broken bucket".
So far, I feel better than I have in quite a while. I'm being SO careful to stay out of the sun and not obsess over missed shots. I'll probably end up paying for this - but it will be worth it (I hope<g>).
Gotta go and take a nap then get togged out for the dinner/awards tonight. This isn't most people's idea of fun - but it sure works for MOTH and me!
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