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Deb Grabetz
Moderator
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Posted: Sat Jun 7th, 2008 18:58 |
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Hello,
Does anyone have any specific suggestions for covering up while going out in this summer weather? I am in Phase II and therefore on MP now for about 15 months.
Normally, I will wear heavy dark clothes. I happened to watch a special on TV last week where dark clothes were discussed and how the sun is more attracted to dark colors. The range of body heat went up almost 20 degrees (skin temperature). So I began questioning if my dark colors were appropriate.
Thanks much!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Carricol
Member
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Posted: Sat Jun 7th, 2008 20:00 |
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| Great question. I wonder about the same things myself. Down here in Texas this time of the year 90 degrees is a cool day. The heat can be stiffling when all covered up. Then try getting into a hot car that has been sitting in the sun. All I know is is to keep the sun from reaching the skin.
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Sarcoidosis 125D38 Ph1 Nov07, fluoxitine Lithium Synthroid 5-HTP tyrosine, NOIRs lite exp r/t commute cover up, Ph2 Jan08 25D9 Feb08
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DNStog
Member
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Posted: Sat Jun 7th, 2008 21:00 |
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I live in Atlanta where summer temps range in 90's to low 100's and this year our drought continues. 
On my first summer of the MP, I wore a widebrimmed hat, used a special coated small umbrella to cover head and help shade eyes, long sleeve turtle neck shirts, long pants, a black cape, gloves, socks with shoes. In addition Keto cream was used on face, hands, wrists and any where the sun might try to sneak a peak and, of course, NOIRS. The second summer of MP, I was able to ditch my hat for Nizoral shampoo that has Ketoconazole in it and used only my umbrella. Third summer I traded Keto cream for sun screen with zinc oxide. This summer, number four, I now wear sleeveless outfits and sandals with exposed skin wearing sun screen, regular amber colored sunglasses, and continue to use Nizoral shampoo. Not only the sun, but heat used to set off my IPs.
All of my clothes were black or dark colored cotton. The waists in all pants were elasticized which gave extra coverage. Trevor addresses the reason the color black is better than light colors and I'll send another post when I locate it on the MP site. I learned that the dark clothing wasn't a lot hotter to my sick body than the skimpier summer pastel outfits. Of course, my time outside was limited to walking to/from car to air-conditioned house/stores/doctors. Microfiber and ultrasuede dark cotton was particularly good. Lots of summer outfits are gauzey, so if I could see through the fabric, I didn't wear it. Layering worked well so items can be removed once inside a building.
Occasionally I would notice an obvious ill-mannered person staring. (Sorry but my parents taught me as a child that staring is rude.) Basically I would smile at them and go on my way. A couple of people wanted to know why I was wearing the NOIRs and I told them I had dysregulated Vitamin D which made me sick. That explanation was later shortened to "I'm allergic to the sun".  When I felt bad and had little quality time to waste, the shortest explanation was best for me. 
Wishing you all well, gently, of course. Donna
PS...See Meg's post on September 7, 2006 at this link regarding dark vs light clothing...
http://www.marshallprotocol.com/forum2/33.html
Last edited on Sat Jun 7th, 2008 23:35 by DNStog
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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laura1814
Member
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Posted: Sat Jun 7th, 2008 21:58 |
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| DNStog, thank you so much for your post. Comparing one summer to the next over your history gives me something to go by and something to look forward to!
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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marion villa
Member
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Posted: Sat Jun 7th, 2008 22:26 |
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Hi Deb:
here in mexico city has been hot, not as much as in atlanta or texas but I manage well by using a long dark cotton tee shirt, dark jeans gloves without fingers( I have them crooked, so they won´t fit in regular gloves, and a very light suede jacket( it is light brown and light weight itself) that´s my hit. Of course a good hat and scarf covering my neck and ears or an australian frillneck which is good. noirs and zinc cream. Yes people stare too here in mexico, but I don't care, maybe the think I am Maddonna or another artist hiding from paparazzi
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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Michele MBK
Member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 69 |
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Posted: Sun Jun 8th, 2008 00:22 |
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It's humid and 100 degrees in Virginia! Whew!
Does anyone have any experience with the medical clothing at this site?
http://www.sunprecautions.com/shop_catalog.asp
I'm just wondering if this special fabric is equivalent to dark clothing and worth the expense. It's nice to hear how DNStog progressed each summer!!! Hope you get some rain and break the drought!
Michele
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Lyme / RA 125D30 25D16 Advil / Vicodin or Celebrex low lux home NoIRS cover up Ph1May08 Ph2Sept08 May 09D25:6
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Jun 8th, 2008 02:58 |
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Excessive sweating is caused by the disease, and by immunopathology. It will disappear as you progress through the MP. Eventually you will see heavy clothing as insulating you from the heat - a concept that one of my academic advisers advanced to me in the 1970s, and one I never really understood until the last few years.
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Markt9452
Member
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Posted: Sun Jun 8th, 2008 03:49 |
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That's interesting Trevor - I'll have to try that.
The problem where I live isn't just the heat.
It get's really hot here in South Western Ontario but the high humidity here is particularly brutal ....
Essex County Ontario has gotta be the hottest most humid place I know of in Canada.
Maybe I'll get one of those air conditioned suits like the NASCAR drivers wear.
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Th1 Lyme 125D20 D2510 Ph1Feb08 Ph2Apr08 daily lite exp covered up NoIRs| MyStory|
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Jun 8th, 2008 04:09 |
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When I was ill I used to buy the capilene thermal underwear from Patagonia. For example: http://tinyurl.com/6n9htg and http://tinyurl.com/5jydjb
This stuff wicked away the sweat beautifully, so that it didn't collect and stain. Additionally, it didn't rot like the cotton undies did.
I still wear the stuff. You might have noticed me walking around Stockholm in my shirt without showing any signs of cold. Now you know why... The interesting thing is that it is brilliant in both hot and cold weather, so I wear it whenever I travel...
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beeletcher
Member
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Posted: Sun Jun 8th, 2008 05:28 |
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Dear Michele,
I won't start the MP until Sept, but I am getting ready and one of the things I did was order some clothing from Sun Precautions.
I am really happy with it. I live in Canada, so it took longer for me to get it and I had to pay $39 duty, even though the package said "medical device". Oh well, it is worth it.
I bought the Womens' Ultra Athlete full zip shirt, which is like a light jacket. Even on a hot day, it is really cool, as it has hidden webbing that air blows through. It is very stylish.
I also bought the Women's Ultra Athlete Pants, I haven't tried them yet. I will go biking tomorrow all covered up.
The hat is the Ultra Athlete Shade Cap. It has a wide brim and a neck drape. I love it. I am wearing my Noirs as I can't go without them because of light sensitivity. This clothing blocks 97% of UVA and UVB rays.
I am trying to find some Canadian suppliers of zinc oxide suncreen. Can anyone help me with that?
Good luck Michele,
Brenda
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sarcoidosis,type 1 diabetes,celiacs,osteopenia,hypothroid,will start mp in sept08
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DNStog
Member
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Posted: Mon Jun 9th, 2008 02:32 |
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When in Phase I, II and the beginning of Phase III, the use of a Cakoon UV brella made dodging the sun and heat much easier. According to their advertisement when I purchased my first one, it blocks UVA, UVB, and infrared.
A silver metallic like coating covers the umbrella which lowers the temperture by at least 10 degrees when under it. Below is a link for all of the different sizes. My favorite was the small one that is 6 1/2 inches when folded. It was really easy to use by manually extending it just enough to go from car to building. My daughter, who is not a patient, loved the large one for sitting in the sun at baseball games, etc.
Here's the link for those interested.
http://www.sun-uv-protection-products.com/umbrella_uv_brella.html
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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beeletcher
Member
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Posted: Mon Jun 9th, 2008 07:44 |
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Dear DNStog,
Thanks for the link.
I haven't used an umbrella for years as it is pretty sunny where I live. But one day it was raining and I liked how it cut the light and made me feel protected.
Brenda
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sarcoidosis,type 1 diabetes,celiacs,osteopenia,hypothroid,will start mp in sept08
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Deb Grabetz
Moderator
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Posted: Mon Jun 9th, 2008 11:26 |
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Donna,
Thank you very much for this link. I have used an umbrella at different times as added protection, how great to find something like this that will actually give adequate block. I have an aunt who has lupus and does her best to avoid outdoor exposure...this would also be wonderful for her!
Feel Great! Deb
p.s. Site easy to use, just ordered my umbrella and they accept PayPal, so no concerns either with a non-secure site! Thanks again, Donna.
Last edited on Mon Jun 9th, 2008 21:14 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1396 |
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Posted: Tue Jun 10th, 2008 01:41 |
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Like Donna I use a specially treated sun umbrella if I am going to be out in the sun longer than it takes to walk from my car to a store. And if it is miserable out, I use it even then.
I wear a black leather jacket and silk lined black leather gloves in the summer.
Like Trevor says, I find the dark leather insulates me from the sun. As long as it is not humid out, I think I feel much cooler than other people on the hottest days. It's the humidity and being surrounded by leather that makes wearing leather difficult. I sort of make up for that (and find the leather better than say a jean jacket) by wearing a pigskin jacket (the leather is sort of stiff and sits away more from the body) that is a couple sizes too big. It doesn't look huge on me or anything.
I also lined the crown of my dark cotton summer hat with the crown of another hat for extra protection when I'm not using the umbrella. And I find a window screen on the driver's side of my car to cut down on some of the heat is helpful. (In some states it is against the law to have certain window screens.)
People stare, but so what?
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Alayne
Member
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 579 |
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Posted: Tue Jun 10th, 2008 02:24 |
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I just looked up the Cakoon umbrellas that Donna suggested. Then, because I am who I am, looked on Ebay. Right now, the 56" umbrella is going for $29.95 + shipping (I saved $15 - had to also pay California tax).
The 56" umbrella can fit two people under it, which means it's large enough for an MP person to stand/sit under at a game, outing, etc., with more coverage. It also folds up to 13", which isn't bad.
I think the smaller 40" Cakoon umbrella sounds great too, Donna . I'm going to test the larger one out first, then see if I need the more portable one.
One can also order an adjustable umbrella holder from the Cakoon website that attaches to outdoor chairs. It's out of stock at the moment, so have no idea what it costs. However, it sounds great for folks who are able to spend some time outside.
The person selling the 56" umbrellas on Ebay has 5 left.
Will let you know how the umbrella works for me. I'll be heading for a parental visit (very bright) for the month of August. Wonder if the umbrella will blind my family, as it's so shiny. Hmmm.
Cheers! Alayne
Last edited on Tue Jun 10th, 2008 02:41 by Alayne
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CFS/FM Sick 30+yrs. NoIRs/Zinc oxide. 6/05:25D-34, 1,25D-69; 11/07:25D-8 1,25-37. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3. 4/09-10/09 weaned off abx. Benicar q4-6h. Heavy metal chelation as recent adjunctive therapy.
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Ceredwyn
Member
| Joined: | Sun Jan 21st, 2007 |
| Location: | Rural, Vermont USA |
| Posts: | 47 |
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Posted: Tue Jun 10th, 2008 13:20 |
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I have started wearing tunics from this website: http://www.islamicoutfitters.com.
They're made in the Pakistani style and go well with jeans. I bought swim tights and a swim shirt from Coolibar.com I've found that even indoor pools have skylights an covering up is best.
I started looking into Islamic clothes because I originally come from Detroit where its pretty common to see Islamic women. I figure that they must have some idea of how to do it. Interestingly, I find these styles are more comfortable than the Western styles I started out wearing. I wear a wide brimmed hat rather than a face drape.
It is worth noting that Arabs, Indians, and Asians tend to wear more clothing in the heat than Westerners. A friend of mine visited India last summer and brought back several saris--just acres of fabric to be wrapped as one sees fit with an under layer of trousers and top.
Fads and fashion aside, form tends to follow function where clothes are concerned.
I get some interesting looks, but nobody except the kids at my son's school have asked about it.
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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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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Jun 10th, 2008 13:40 |
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It is the West who, in the 20th century, developed a liking for exposure to the sun.
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ginariggio
Member
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Posted: Tue Jun 10th, 2008 14:11 |
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Hi. I just bought some stuff from this website:
http://www.sungrubbies.com
The woman who owns the company has a friend who is on the MP and says that she uses their products as well. (I know this because I wrote to her regarding the article on her company site about Lupus and she responded...small world!)
Anyway, in addition to clothing, hats, etc for both men and women, they also sell 98% UV blocking fabric by the yard. its 60" wide so you can make a lot from a yard. I made UV-blocking curtains for my room in a nice powder-blue color and will probably try to make some dress pants, too.
I was happy with what I purchased from them so I thought I'd pass their name along.
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dx: Ulcerative Colitis 5/2003, 3/15/08: 25D-9 & 125D-66, temporarily on hiatus from the MP.
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Jun 10th, 2008 19:04 |
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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.
Take a look at
http://marshallprotocol.com/forum2/2566.html
and
http://marshallprotocol.com/forum2/1743.html
..Trevor..
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expate
Member
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Posted: Wed Jun 11th, 2008 07:29 |
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I've gone through many phases wondering what to wear without the benefit of being on the MP (start date July 16, but currently reduced D throught diet and light exposure). I've looked at nun's habits and burquas and have found (for women) the caftan to be an interesting choice. I've ordered a few and find we have much to learn in dress from our middle eastern sisters. One caftan I have (from jpeterman.com), while not of the best material (mid-heavy cotton but in a light color), has a wonderful construction which keeps it off away from your body. If you seal the "edges" with a scarf, gloves, socks, you get a lot of air circulation, ie. not hot/cling to your body stuff.
Looking forward to investigating the various links provided here. I do think lifestyle questions are so important to being compliant.
Thanks for this forum!
Odette
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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), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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