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Sarah Jane
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| Joined: | Fri Jun 15th, 2007 |
| Location: | Alberta Canada |
| Posts: | 155 |
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Posted: Mon Jun 22nd, 2009 19:46 |
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Hello, Jerri! Welcome to the Lifestyles forums. 
When I first started avoiding D, my photosensitivity increased markedly (long before Benicar) and I wore my lighter NoIRs around the house and for TV and the computer (even with both turned to low light). Sometime after starting Benicar, I found I didn't need the NoIRs indoors, which was a great relief as I've never worn glasses and really don't enjoy the world being so yellow. 
I still need NoIRs outdoors. When I first started the treatment, I was wearing my own darkest pair, with a larger pair of lighter ones over top. Any little gap of light between my face and the glasses was like a knife slicing my eyeball. After a few months I was able to remove the extra pair of NoIRs and just wear my dark ones outside, and then about a year into the MP the dark ones were too dark and I moved to wearing my lighter ones outdoors.
All along (and even before the MP) I've found that natural light is much more painful than indoor lighting. I'll do fine with both kitchen lights turned on just as long as the shades over the window and back porch doors are closed with no gaps. But open one of those doors and it's like a hammer to the head. I don't find the effects to be very long lasting anymore (a few minutes for a flash of light, up to an hour if the natural light exposure is longer), which is another positive step in the right direction.
With my computer turned to the lowest lighting, and the TV on low-brightness (making some dark scenes very hard to see!) I don't notice any effect from either, no matter how long I choose to be on the computer or watch television, or both.
We've also found that another light to offset the TV or computer screen remarkably blunts the effects of those light sources, though sometimes it's a science as to which lights should be on or off, depending on how three of us are feeling and where in the living room we're each sitting, lol. 
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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Sarah Jane
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| Joined: | Fri Jun 15th, 2007 |
| Location: | Alberta Canada |
| Posts: | 155 |
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Posted: Fri Jun 26th, 2009 22:07 |
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| Dad got me an electric heating pad the other day. There's a slight plastic gas-off as it breaks in, but the heat is quite soothing. It works more for my back than my front (flatter surface), but I have my lovely gel pack for my front, which is still working really well for pain. The fastest relief seems to come from combining heat with my sublingual Benicar dose.
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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JanEE
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Posted: Fri Jun 26th, 2009 23:43 |
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Sarah Jane, I meant to answer this days ago and I got sidetracked. I had never heard of dispensing dried corn from a gum-ball machine for the animals, but then I haven't been to a petting zoo since my granddaughters were little. They are now grown.
I am indeed familiar with Etsy because one of my granddaughters sells her knitting and other crafts on Etsy. She's an Etsy pro too, as well as several other online things, such as her blog and Facebook. I finally joined Facebook myself so I could share their, and other relative's, fun. I also can see the pictures that they post, which I never would see otherwise. I've spent a lot of time looking around on Etsy, and have been impressed by the quality available. Are you unable to make your jewelry while on the protocol? I know it's difficult when you don't feel well to be creative, as I tried to get back to my oil painting a while back, and managed to do a little of it, but it's impossible while going through IP.
Hi Jerri, glad to have you with us. I hope you find some good ideas to use here. I know how hard it is dealing with the eye sensitivity, but before you know it it will be better. Hang in there.
Claire, I used to have opaque black construction paper taped around my lampshades, as well as low watt bulbs. It worked great. I even went so far as to hang a wide piece of it inside my refrigerator to keep those lights from glaring in my eyes when I opened the door. In fact, that's still hanging there. It might just be there forever. Its easier to see inside the fridge when the light isn't in your eyes.
I also have one of those fixtures with round lights in my bathroom. After unscrewing half of them, I scotch-taped (with a piece of double faced tape in the center) a square of black paper on the front of those too, and it worked beautifully.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1396 |
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Posted: Sat Jun 27th, 2009 02:10 |
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| When I had night lights all over the house (when I could tolerate hardly anything else), I used scrapbooking paper to create little colorful shades for all the night lights. They were so cute!
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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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JanEE
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Posted: Sat Jun 27th, 2009 02:35 |
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Cle-Ver!!! I'll bet they were cute. I was caught so off-guard by the sudden sensitivity I felt lucky to get lesser watt bulbs in, and the black paper taped up here and there. As I've said, I don't think I started out right doing the MP and should have waited a bit before beginning. I wasn't advised that this could hit so fast or to the importance of having these things in place first, and I was so desperate for help that I hadn't had time to read and understand what was going to happen. I think these things can make a world of difference in how one gets along. I guess we all make boo-boos along the way that we wish we could go back and do over---and I guess that's exactly the spot I'm in now. Time out and then start over.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Sarah Jane
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| Joined: | Fri Jun 15th, 2007 |
| Location: | Alberta Canada |
| Posts: | 155 |
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Posted: Sat Jun 27th, 2009 19:50 |
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I have a little nightlight in the bathroom that I use at night when turning on the light would devastate my brain. It's been getting a bit slower at turning on after I flick it's switch, so the poor thing might be tiring out. I think I may need to get a replacement to have on hand before it kicks the bucket or one day I'll be stranded in the bathroom in the middle of the night, lol.
Claire, I love that you used different colours to shelter your nightlights, that's so creative!
Jan, on most days I'm still able to create jewelry. Intense pain IP days, or flattened-brain IP days I can't, but it hasn't been an issue until a few weeks ago. I have my Etsy shop in Vacation Mode at the moment not because I couldn't make the jewelry (though I haven't made many new things lately, and photographing them is the biggest hassle), but because I couldn't package up orders to send out. There's a variety of steps involved, including polishing and drying the piece, attaching it to a bit of stiff paper if warranted, sealing it in a small plastic baggie, including the necessary cards with care instruction, etc, wrapping it prettily in tissue paper and tying it with ribbon, adding a business card with a thank you note written on the back, finding and properly addressing the bubble envelope, and organizing someone to go and mail it for me.
The packaging alone can take me an hour, especially on a bad day, and I really like being able to get a person's order together swiftly and have it mailed the next day (ideally without having to sacrifice something like my evening yoga to get it done). Being unable to do so caused a lot of stress with my last earring order, and that's when I decided that a bit of a "vacation" was warranted. I miss looking at all my pretty items (I had nearly 100 in my shop- the listings still exist, they're just hidden), but I have found this break to be a great relief. Not worrying about my shop in general (never mind filling an order!) has been a surprising wake-up call that I actually thought about my shop and what I was doing for/about the various aspects to an astonishing level. My mind seemed always to be pondering where/what I could improve and whether or not I had the time/energy/wherewithal to actually do it. 
In the meantime, I have created a few new pieces. A pair of pearl earrings that were a gift (my dad was dropping them off so no envelope needed), I managed to get boxed and ready to go. I have another pair of earrings that need to be mailed, and those I'm trying to get done today for mailing tomorrow. I also have an order that an Etsy friend placed (she has CFS, so she understands me needing to take my time with it), though she wants the earrings hammered from fine silver and all I have is sterling, so I'll probably need to order some fine silver for her.
I feel like I'm rambling... lol. Boy, get me started talking about jewelry, eh? *wink*
I am sorry that you haven't been able to paint. I used to paint with watercolours (I think I mentioned that in another thread...) but haven't in years. I would like to get back into it, but haven't been able to yet. I was going along fine until we bought our house before this one and started doing renos on it. We moved in, lived there nearly two years, then bought this one and moved here and have been here for over a year and a half. So I think it's about 2005 since I last painted (I've done a bit here and there, but it's been a struggle).
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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JanEE
Member
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Posted: Sat Jun 27th, 2009 22:07 |
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Sarah Jane, one tends to not think about the behind-the-scenes things that need to be done when owning your own business, but it can surely entail a lot of extra work. And it sounds as though you put as much effort into your packaging as you do the jewelry. My youngest daughter just started her own online business also and is constantly busy packaging and mailing things, as well as photographing them, and record-keeping, etc.---all while trying to work another job in container planting.
I enjoy reading about your projects, so feel free to "ramble". My whole family is involved in creative things and we're always talking about all our different pursuits. Sometimes there is time to work on them, and sometimes there is not. When that happens, we enjoy hearing about others. Life still happens, like the MP, when we'd like to be doing other things, but sometimes there isn't always the time or energy.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Thu Jul 2nd, 2009 18:52 |
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I so don't have the energy, I had to put my etsy shop on hold also. Unfortunately, I still am working on my last order and with brain fatigue.... it's a nightmare. Knitting is very unforgiving of lapses in focus.
Today I am destroyed by a gas spill exposure (someone spilled on their car when filling up) combined with warm damp off wet ground. So I'm wearing my winter clothing of double socks, long sleeve shirt over an undershirt, and warm fuzzy soft pants. It's amazing how much comfort feeling wrapped in softness and warmth feels like when you're under the weather.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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JanEE
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Posted: Thu Jul 2nd, 2009 19:25 |
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Boy, isn't that the truth! Every time I used to climb into bed when first starting the protocol I used to say (out loud), "Oooh, I love my bed". And then I would snuggle down into it and just relish the comfort until falling asleep. I still feel that way.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1396 |
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Posted: Thu Jul 2nd, 2009 20:49 |
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I've spent much of the day in my big, pink furry winter bathrobe Juanita. And so I am with you getting comfort out of softness. Hope you recover from the gas spill soon.
Hugs, 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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