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Ceredwyn
Member in Phase 3
| Joined: | Sun Jan 21st, 2007 |
| Location: | Rural, Vermont USA |
| Posts: | 47 |
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Posted: Wed Jun 11th, 2008 13:50 |
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"UV blocking is not what you need. You need to block everything, visible and IR included. the lightweight fabrics typically don't do this."
This is where I'm finding the Islamic garments really helpful. They are loose and unconfining, but made of dark opaque fabrics with close weave. Some of the tunics do require a shirt underneath to fully block all light.
I have started wearing a scarf rather than a hat today with sunscreen on my face--I'll let you know how it works compared to my 5" brimmed hat.
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Lyme FM JRA1985 endometriosis osteopenia 125D79 25D39 Ph1Mar07 ModPh2Aug07 Ph2Dec07 Ph3Apr08 Armour Thyroid, Effexor Motrin Vicoden 25D14 (Aug07) NoIRs lite exp r/t child care
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Deb Grabetz
Advocate
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Posted: Thu Jun 12th, 2008 12:39 |
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Last year was spent trying hoodies. After I saw a pic of Claire with her oh so "stylin" brimmed hat, I went out and bought one. I will say at that time it was a matter of vanity I soon found that my wide brimmed hat and scarf that I don, even in this 80+ degree weather provide me with much more protection. I do not respond with the neuro symptoms with the hat and scarf as I do with hoodies. Sometimes I will first wrap my scarf over the top of my head, cover with hat and wrap my scarf around my neck. Not so on the really hot days though! Thanks Claire for that great pic...
you inspire me!!! 
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Dr Trevor Marshall
Research Team
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Posted: Thu Jun 12th, 2008 13:45 |
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Yes, it is amazing how much radiation gets through the single layer garments. That is why we are pretty certain the Infra-red (heat) radiation is also a factor, at least with people who are pretty seriously ill... Like most of us...
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Kas
Member in Phase 2
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Posted: Thu Jun 12th, 2008 13:51 |
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I am finding success with two layers of Kabana cream on any exposed skin and the OZONE sun range of hoodies. They come in black and white ( I favour the black ones) and are not heavy, but seem very effective. They zip right up to the neck and worn with their flesh coloured gloves and Noirs and a wide brimmed hat or cap, I think you will have pretty good protection when you venture out. I dressed like this on a recent 2,300 KM daylight car trip over 8 days, and can honestly say that I seem to have suffered no light exposure effects. I was, as Dr M recommends, never more than four hours away from next dose of Beni, which I am also sure made things so tolerable.
Also, I found wonderful fit- over frames for those who wear glasses. They are stylish and not at all 'geeky' . They are made by a company called Live Eyewear and I particularly like the E series. They run at about US$ 40 on the internet and they are easily shipped wherever. I then buy the NOir blanks and hav them fitted into the frames. The only hassle here, is that sometimes the blanks crack, as the lenses have to be stretched during the fitting. It can happen and there have been occasions when I have had to order further blanks. I spoke to Noir about this and the lady said she would mention it to her bosses and also tell them about more stylish eyewear.
BTW, I have just ordered the small umbrella and can't wait for it to arrive - thanks.
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Gail
Member in Phase 2
| Joined: | Tue Jun 20th, 2006 |
| Location: | USA |
| Posts: | 167 |
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Posted: Fri Jun 13th, 2008 20:36 |
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Because I have a high Rx for my left eye and can't get the wraparound lenses and I don't have a lot of money that I can lay out for special lenses and frames, I had to come up with something that didn't look too hideous.
So, I went to Walmart and bought two pair of their $20 fit-over Solar Shields, which come in several styles and sizes (you can also get them from Walgreens, but I think the selection is a bit more limited and pricier). I then had NoIR send me a pair each of 10% blanks and 2% blanks. I went to Sports Optical (you can order from them online, but they happen to be located right here in Denver so I was able to just walk in!  ) and had them grind down the edges so the blanks fit into the frames. I also had some left over Extra Dark 5% Limo tinting (also form Walmart), which I used on some of my windows, and cut out small pieces to put on the side panels.
These fit-overs work great and look half way decent too!!  And since I am particularly hard on glasses, if I break a pair I can just go to Walmart and get another pair for just $20, pop the lenses right in and go again.
Eventually I will go back to wearing contacts and will be able to use my non-fitover wraparound sunglasses with special NoIR insert lenses.
"It is never too late to be what you might have been." -George Eliot
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Sarcoidosis/lungs, uveitis, gallbladder, hypothyroid, palps; 125D=30/25D=14; Ph1 Sep07, ModPh2 Nov07, Ph2 Mar08; Synthroid, Allegra, Dramamime(1-2qPM), Lotemax1qOD, oxycodone, Benadryl, ibuprophen, Tagamet(2-4qday), NoIRs, all covered up
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Dr Trevor Marshall
Research Team
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Posted: Fri Jun 13th, 2008 21:02 |
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Please understand. There is a HUGE difference between commercial sunglasses and NoIR. You just wasted your money.
Please understand that if there were any alternatives we would list them - and we do list some of the expensive Zeiss prescription lenses.
The NoIRs are not an item you can cut corners on. Sorry about that. It's just the way it is...
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Gail
Member in Phase 2
| Joined: | Tue Jun 20th, 2006 |
| Location: | USA |
| Posts: | 167 |
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Posted: Fri Jun 13th, 2008 21:52 |
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Trevor...
Please let me clarify...
I have NoIR "blanks" ground to fit into my fitovers so that they are just like the NoIR fitovers, much like Kas...
I then buy the NOir blanks and hav them fitted into the frames.
The tinting that I added to the small side windows (half the size of the NoIR side windows) are within the requirements of blocking UV and IR (about 2%. I got the data from the company that makes it). If I have missed something please let me know because if I did, I need to fix it right away.
By the way, I do have another pair of actual NoIR fitovers that I sometimes wear outside over my other fitovers on big herx days. I don't wear them much, and had to do something else, because they let in way too much light...more than the ones I have been wearing.
"It is never too late to be what you might have been." -George Eliot
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Sarcoidosis/lungs, uveitis, gallbladder, hypothyroid, palps; 125D=30/25D=14; Ph1 Sep07, ModPh2 Nov07, Ph2 Mar08; Synthroid, Allegra, Dramamime(1-2qPM), Lotemax1qOD, oxycodone, Benadryl, ibuprophen, Tagamet(2-4qday), NoIRs, all covered up
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John McDonald
Administrator
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Posted: Fri Jun 13th, 2008 21:55 |
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I then had NoIR send me a pair each of 10% blanks and 2% blanks...and had them [ground] so the [NOIR] blanks fit into the [commercial] frames.
I may have missed something but it sounds creative to me. Gail, you are using NOIR lenses (blanks) in the commercial glasses aren't you or did I mis-read that. How are the side shields?
I drive quite a lot with the NOIR 907s and have noticed that I get a considerable light leak bouncing off of my cheeks and then under the lenses. It is far easier to see through the glasses if I block that light with my fingers, otherwise I get veiling glare. I have been considering taping a wee bit of blocking cloth to the bottoms of the lenses or maybe painting my cheeks with that black stuff that football players use. That should excite the bank tellers.
-john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Gail
Member in Phase 2
| Joined: | Tue Jun 20th, 2006 |
| Location: | USA |
| Posts: | 167 |
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Posted: Fri Jun 13th, 2008 22:13 |
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John...
You are correct! The side shields do block a lot of light, but I don't have to turn my head as far as I would if I had side blinders on. As far as the "cheek leak" goes...I have high cheekbones and still get light leaks, just not as much as I do from the NoIR brand frames. I too have thought of putting something on the edges to block the light and had a tech at Sports Optical tell my that foam works well. I was just about to try some of the skinny foam weather strips that already has a "peel and stick" side.
"It is never too late to be what you might have been." -George Eliot Last edited on Fri Jun 13th, 2008 22:32 by Gail
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Sarcoidosis/lungs, uveitis, gallbladder, hypothyroid, palps; 125D=30/25D=14; Ph1 Sep07, ModPh2 Nov07, Ph2 Mar08; Synthroid, Allegra, Dramamime(1-2qPM), Lotemax1qOD, oxycodone, Benadryl, ibuprophen, Tagamet(2-4qday), NoIRs, all covered up
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Kas
Member in Phase 2
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Posted: Fri Jun 13th, 2008 23:10 |
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I do the same as Gail with commercial frames. I erroneously called my frames wrap arounds, when I meant fit- overs, as I also wear glasses.
I find that with the Live Eyewear frames, I am not getting any light in from the sides with the 9 series. I don't really like the llittle side bits, anyway.
I use zinc oxide cream on my face for protection there, but I at least know my eyes are being protected fashionably enough!!!
http://www.sunglassesgiant.com/lieysenisu.html
The frames are really strong and will outlast the cheaper Solar Shiled ones. You may have to replace the Noir blanks, though - mine lasted 6 months before cracking, but not so badly that they are affecting my vision.
I wondered if you covered your skin with say, Kabana cream, and then wore a thinner materialed covering, would you have adequate sun protection? I have done that and it seems to work for me, but I am not sure if it is enough. I find wearing heavy materials in the Toronto heat and humidity makes me feel really ill and overheated. I usually put on two coats of cream on my hands and when driving use the Coolibar bone coloured gloves.
Last edited on Sat Jun 14th, 2008 04:07 by Kas
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Ceredwyn
Member in Phase 3
| Joined: | Sun Jan 21st, 2007 |
| Location: | Rural, Vermont USA |
| Posts: | 47 |
| Status: |
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Posted: Sun Jun 15th, 2008 15:10 |
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Over the past week I've been experimenting with different ways to protect my face. I ordered some hijabs from this site http://www.starscarves.com/amirahijab.html. The underscarf comes down quite low on the forhead. My Noirs reach it. And I can still fit my hat over it!
So, for feeding my animals, where I spend up to an hour outside I first put suncreen all over my face and neck, then the hijab(mine is black), then my 5" brimmed hat. I look odd, but I was a punk girl in the late 80's . I don't feel bad after spending time outdoor and this is a wonderful thing
THis style is also popular with cancer pt who are experiencing hair loss according to the website.
Oh, I also found that its not uncommon for the Muslimahs to wear a damp scarf around their necks or under their hijab to deal with the the heat!
Last edited on Sun Jun 15th, 2008 15:14 by Ceredwyn
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Lyme FM JRA1985 endometriosis osteopenia 125D79 25D39 Ph1Mar07 ModPh2Aug07 Ph2Dec07 Ph3Apr08 Armour Thyroid, Effexor Motrin Vicoden 25D14 (Aug07) NoIRs lite exp r/t child care
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expate
Member in Phase 2
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Posted: Mon Jun 16th, 2008 08:57 |
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Ceredwyn wrote:
Oh, I also found that its not uncommon for the Muslimahs to wear a damp scarf around their necks or under their hijab to deal with the the heat!
Great tip!
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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LizB
Member
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Posted: Tue Jun 17th, 2008 00:51 |
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Hi Brenda,
I'm in Nanaimo (loving the cool, cloudy weather), and the cashier at my drugstore suggested something called "elta block". It's a sunblock and moisturizer with 4.5% zinc oxide. She had used it for a couple years, and really liked the moisturizer part of it. I like it so far. It's manufactured by Swiss-American Products, Inc. Their website is http://www.elta.net.
Cheers,
Liz
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Undifferentiated CTD with chronic fatigue; hypothyroid; synthroid/oxazepam/elavil NoIR's LoLux indoors mostly; looking for doc
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Shadowfeet
Member in Phase 2
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Posted: Wed Jun 18th, 2008 04:51 |
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Following a suggestion from another Aussie member, Claudia, I found denim clothing to be a reasonably cool cover-up in Summer. I bought a second-hand denim jacket and a full length denim skirt from ebay. I would wear socks and sneakers with the skirt, so that my feet and ankles were covered. This clothing still lets air circulate, and if you get a good thick denim it blocks a lot of light.
I have also tried clothing made from bamboo fabric. Sounds bizarre, but it is very soft and comfortable! Bamboo fabric draws moisture away from the skin, and feels cool in warm weather. Bamboo has natural anti-bacterial properties, and is hypoallergenic because the crops require virtually no pesticides/fertilisers (cotton uses a lot). I have also read that bamboo fabric absorbs up to 98% of UV rays. The tops that I purchased aren't that thick, so I use them as a base layer, and wear another layer over them. There are a lot of companies now selling this clothing, I just did an online search for "bamboo clothing" to find local and mail-order shops.
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CFS thyroiditis endometriosis 125D34 25D>7Dec07 Effexor Lyrica thyroxine clonazepam OCP NoIRs limited outings covered up Ph1Sep07 ModPh2Dec07 Ph2May08
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beeletcher
Member in Phase 2
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Posted: Wed Jun 18th, 2008 05:56 |
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Hi Liz,
Thanks for the info! I just want to find something that I don't have to pay duty on.
I will be leaving for the Kootenays on Saturday, taking 3 days to travel. So I hopefully can find something as I go thru the Okanagan.
I won't start the MP until the end of August or Sept. I have a doctor and I have been accepted.
Have you been on it very long?
I have been off Vit D since April 18 and I am experiencing some IP. I want to get my 25D down before I start. The brain fog is terrible, my typing is awful and I have to correct continually. Luckily I have just retired, so there are no demands on me.
I lived in Nanaimo in 1972 when I went to the old Malispina College to upgrade before I went to BCIT for Lab Technology. My career has really helped me understand the molecular biology of the MP. I find it fascinating. My doctor is really with it and they are questioning what they say to patients about taking Vit D. To me it is deadly. The VDR is amazing and all the things it does.
Anyway, e-mail me anytime.
Hope you don't feel too bad,
Brenda
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sarcoidosis,type 1 diabetes,celiacs,osteopenia,hypothroid,will start mp in sept08
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LizB
Member
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Posted: Wed Jun 18th, 2008 19:55 |
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Hi Brenda,
I'm at the same stage you are, except I don't have a doctor lined up yet. I'm working on a couple and hoping one will come through, also hoping to start in September or so.
I too have been working on lowering my D's, since I tried a supplement the end of January and ended up with a really bad reaction, exactly the same as if I'd had a nasty run-in with the sun. And, yes, I'm definitely getting some immune pathology going on. Yes, typing  , and general brain deadness. I have my little lupus face rash that only shows when I'm in some type of flare, so I know I'm killing bugs. New IP on Monday night. Didn't sleep at all. Partway through the night, the way I was lying I could feel my pulse. When I counted the hearbeats and ended up with a rate over 100, I thought "Yeah, guess that's why I'm not sleeping." Fortuneatly I was back on track last night, and I'm off to get my throid checked tomorrow.
By the way, Knochen has a recipe on the MP site for sunscreen made with ingredients you can order on-line.
I would love to exchange e-mails. Do you know how it works? I don't remember, but I do remember seeing something about it, so I'll check into it.
Cheers,
Liz
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Undifferentiated CTD with chronic fatigue; hypothyroid; synthroid/oxazepam/elavil NoIR's LoLux indoors mostly; looking for doc
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beeletcher
Member in Phase 2
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Posted: Thu Jun 19th, 2008 02:13 |
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Hi Liz,
I have been so happy to find some BC people on the MP. I would be thrilled to e-mail you on a regular basis. I am divorced and single and have a few friends that will help me, but I am going to feel very alone. My family is a bit nervous, my daughter was really up in arms for me NOT to do it. I haven't even talked to her lately as she gets her back up. She lives in Burnaby. I am going on holidays on Saturday and need to write up a short version of the MP to give to everyone.
I actually have a doctor, she has always been into other alternative things. She has 2 kids with autism and travelled extensively to help her kids. They are perfectly normal now. So she was the one that said she would follow me. Her husband is really my doctor. I even phoned Dr. Greg Blaney in Vancouver and he is an MP doctor (he has been on it himself and is on the MP web site alot) in case I couldn't find someone. So I am very lucky.
I found the following things helpful:
http://bacteriality.com/2008/05/07/mpintro/
Amy tells what the MP is for 85 mins. I will tell my family to watch.
Also I ordered the DVD's. I did donate $40 to them. They came in 2 weeks and I have given them to my doctor.
I have printed out a Herx chart and record how I feel on it. Isn't it amazing that all these things I have felt all these years are ABNORMAL!!!!
I have seen many patients in my 33 years as a lab tech with "autoimmune" diseases, most are on Methotrexate, prednisone etc. It is terrible. The lupus patients are always in pain, same with rheumatoid. I assume you have a collagen disorder. You must be in pain also.
You talk about your nights. Last night I slept well. I am 56 and get lots of hot flashes, although they say it is the inflammation. That would be great to get rid of those. Then of course I have such bad chills. But one night I had a feeling that someone was in my 750 sq ft apartment!! I knew there wasn't but I had to get up and check a couple of times. So I know I will get neurological problems. I am never depressed so I hope this doesn't happen. I am also not a crier so it will be interesting to see what happens.
Anyway, write soon!
Brenda
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sarcoidosis,type 1 diabetes,celiacs,osteopenia,hypothroid,will start mp in sept08
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Deb Grabetz
Advocate
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Posted: Fri Jun 20th, 2008 20:41 |
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Hi all..
I received my UV/IR block umbrella that Donna had suggested. It's a great lightweight and very attractive umbrella that folds nice and neat. I would suggest that anyone who might be considering ordering, buy the larger size though as the smallest size is a bit smaller than a regular size umbrella. The larger would be more versatile and would give more coverage!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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beeletcher
Member in Phase 2
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Posted: Fri Jun 20th, 2008 20:56 |
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Thanks Deb!
It sounds great!
Brenda
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sarcoidosis,type 1 diabetes,celiacs,osteopenia,hypothroid,will start mp in sept08
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Ceredwyn
Member in Phase 3
| Joined: | Sun Jan 21st, 2007 |
| Location: | Rural, Vermont USA |
| Posts: | 47 |
| Status: |
Offline
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Posted: Sat Jun 21st, 2008 14:39 |
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I posted this on my blog, http://www.longtrailwithlyme.blogspot.com, but its also appropriate here:
I don't mind if people ask me questions in an honestly curious or sympathetic way, but its amazing how many people feel the need to be rude to me. These are, I am sure, the same people who feel the need to appoint themselves fatpolice.
So here are the answers to the sun protection FAOQ (frequently asked obnoxious questions) :
Yes, I can see just fine with these glasses.
Even driving
Even indoors.
I have three pairs of glasses 40%, 10%, 2% (meaning that this is the amount of visible light that they allow to reach my eye) or dark, darker and darkest.
Yes I really do need them. They are, in fact, medical devices that block UVA, UVB and infrared.
No they are not fashionable. But then, medical devices are not known for their sexiness.
Yes, Its hot.
No, I am not dressed for the Arctic/skiing/sledding.
Yes, I am aware of what month it is
Yes, I do need gloves.
No, I am not a bank robber/terrorist.
No, I have not changed my religion. Muslimahs do not let their hair show and do not take off their hijabs when they sit down to dinner in a public restaurant
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No, I am not wearing a burqa. Those cover the whole face
Yes I do know how weird I look.
No, this is not a lifestyle choice, a fashion statement, or a bid for attention.
No sunscreen will not do it. I apply sunscreen under my clothes, in fact.
No, lack of sunlight is not making me depressed. Actually having my symptoms begin to resolve is making me pretty happy.
No, I am not worried about osteoporosis(well not from this anyway).
No, I don't know how long I have to do this, but eventually I will be less sun- sensitive. You, on the other hand, you will probably still be an insensitive boor who asks personal questions of people they hardly know in a less than polite fashion.
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Lyme FM JRA1985 endometriosis osteopenia 125D79 25D39 Ph1Mar07 ModPh2Aug07 Ph2Dec07 Ph3Apr08 Armour Thyroid, Effexor Motrin Vicoden 25D14 (Aug07) NoIRs lite exp r/t child care
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