I am glad to hear your wife is supportive; my husband is too. :o At times though he thinks I am being paranoid about sun and flourescent lights. :cry: It's tough to compete with a dishwasher! lol! 8)
Nylon/polyester would be great and as dark as you can get. My neighbor made the curtains (skylights) 2 sided with polyester fill in between the layers of polyester/nylon for extra protection and more depth. She used 3 expandable curtain rods across the window to keep the curtains closer to the skylight and block more light. 2 at each end and 1 in the middle with a sleeve for the middle rod. Ironically, I have always wanted to have skylights (prior to Lupus) and now I am very thankful I don't have them.
I haven't seen the flashy LED lamps yet; I will have to check that out when they come down in price. Mmmm, thanks for passing the info on.
I hear you; it's more fun to be outside than inside all the time. I was a very outdoorsy person; I adapted but still miss simple things like swimming in our pool with my children during daylight. In the Summer; my house looks like a batman cave. Dark!! lol.
I took the plunge and went and put uv film on the whole house. Not cheap--but I figured having to wear a hat and sun umbrella inside my place is just not right.
I toyed with the idea of having a uv backing for the curtains--but this would mean my wife can't open the curtains when I am around...
Yeah LED lights are the next big thing apparently. This is excellent news for those of us in countries where they are progressively banning/phasing out incandescent bulbs. These lights (on paper) were supposed to last for 150 years when used 2 hrs a day.
I took your advice and went on the coolibar website--I say I like the range of hats~!
Hey just wondering, have anyone ever bought that "face vest" from coolibar? (not the one that makes you look like Hannibal--the loose fitting one that covers the head too). It seems like the perfect thing for those nasty gardening jobs where you have to look up in the sun--is it comfortable to wear?
I am happy to hear you plunged and put the uv film on the whole entire house. It's expensive, but it gives you peace of mind and protects you at the same time, it's worth it. Your health and sanity is worth every single penney; and your wife will be able to enjoy the outside view. The curtains are expensive and yes, she would have to close them when you are around. . . . . . bummer!!! No more hybernation!!!!
I saw your other post about morbidity rates for men, etc. Stay positive, keep your 3 month check up appointments, eat healthy and take care of yourself. The three month check-ups are really the main key. What is the proposed treatment? Cellcept?? I would also really count your carbs per meal (40 max).
A really good book to read is by the actress Maureen Pratt something like "Living with Lupus" or Coping. It can be found in the local library system or on Amazon. It was an eye opener and reality check, and really forced me to get organized just in case . . . . . Thankfully, I had applied for life insurance prior to the Lupus diagnosis so if anything should happen; my family would be taken care of but hopefully that will not happen. I am thinking positive because there is no other alternative.
Yeah, I really want to see these LED lights in a lamp. I have the spot lights under my counter and they are really bright individually; though not bright enough to read a book at the breakfast bar. lol. Though, I holding out for a couple of lamps.
I am glad to hear you checked out the Coolibar website. I have a couple of their hats (August clearance) and putchase a top and pants when clearanced out. They really do help tremendously; our uv rating is so high in CA as I am sure it is in Australia. I can get out of my batman cave in the Summer. lol. Mainly, I am safe and I don't feel so isolated so I feel more confident when running to the market, etc. The clothing is very cool too in the Summer.
Keep us updated on the inflammation and treatment. I hope you get to feeling better. I am glad you decided to UV tint. Ooh, if you can get a note from your doctor that it is a medical necessity due to your illness, you may be able to write it off as a medical expense as long as it is documented on letterhead from your doctor. I would check with your CPA whom would know your tax laws. Sunscreen, UV clothing and hats, tint on your house windows and on your cars/trucks, etc. I had to put tint on both cars; it's expensive. Take it easy. Keep us updated. . . . .
I now have so many places inside my house to roam--I don't know what to do with myself. Yes, I agree, the filters are worth it.
I am keeping my monthly appointment with my specialist. Currently I am just on prednisone and plaquenil--the doc told me the kidneys were a little inflammed at the beginning, but he didn't mention it again so it might have gotten better.
I will head off to the library and look for that book. :)
I am thinking of a wrap around on the coolibar site--it's a little freaky looking but at least I can prune those trees without frying myself. It's made out of that suntec material so it might be worth a shot.
Thanks also for the encouragement--I will keep healthy and have as much fun as I can.... :)
PS Over here we can't claim medical expenses off our tax.....sucks eh?
Don't you just love how can you are free to roam anywhere you want and anytime? I am glad you took the plunge.
Glad to hear you are keeping your appoint with the specialist; keep it up and stay consistent. I know it's not fun; it seems like my leash gets shorter between dr visits with my GP & Rhuemy.
I hope you are able to find the book by Maureen Pratt. It is very enlightening and it took me back a little because it made me think of having everything in order "just in case" it gets worse or better.
Go for the wrap around on coolibar, so it's a little "freaky" and not so "in style and cool" (lol) but do you want "style and fried and inflammation" or "freaky and in good health, less prednisone?" (lol). In the Summer, when it's 112+, I am covered in coolibar or nylon clothes from head to toe to go to the market.
At first it bothered me when everyone else is running abound in shorts & tank tops. After several flares and crawling from my bed to the bathroom, I am covered all the time. I don't care if I am freaky. lol.
I am shocked you can't claim medical expenses off your tax. . . . hmmm. Do you have something like a cafeteria pre-tax plan? Where you have $$ taken out for insurance, etc? If so, you might be able to utilize that?? We have it in the US; not sure about Australia.
Take care and wonder in your house to your hearts content!!!! :) :) 8)
Faith 8) 8)
Oh yeah--it's like moving into a new house all over again. I love it. Living in constant fear of being fried inside my house isn't good for my stress levels. I am back at work today and my head of department told me to go ahead and install filters in my office windows and well as all the fluro lights I am likely to sit under. The windows are not small mind you--so I am very fortunate to be working here.
I am definitely going to buy myself those wrap arounds. I figured in cold weather--they just look (IF YOU SQUINT A LITTLE AND USE stacks OF IMAGINATION) like some sort of fancy scarfe to keep warm...there are situations where we cannot avoid looking into the sun--pruning those trees (oh fun), riding on a plane etc.
It's best to be protected. I used to get upset when people stare or make comments. I remember the first time I had to go to the market with my wife--I got so much crap from people. (I had a sun umbrella). I am trying to cultivate a thick skin so that when they stare--I just stare back (friendly-like mind you--not like pscho-I-am-gonna-rip-your-head-off-like). Hey I figured--I have nothing to hide--I know why I am doing what I am doing--if they are so interested, they should come up and ask me why--it'll save all of us a lot of staring.
I used to look away or feel ashamed--but I think the more I act like there is something wrong with the way I am behaving--the more crap I will cop from people.
It's a culture thing--in Asian counties it is normal for both male and female to be completely paranoid about sun exposure. Not in macho Oz and NZ--where getting skin cancer is cool...especially if you are a bloke.
Way to go on the filters in the office; I am impressed since most public institutions won't pay for filters. Congrats. You are very blessed and fortunate.
I remember taking my son to a batting lesson, it was 102, in the Summer. His mouthy trainer stated "if you weren't covered from head to toe and slacks and a long sleeve shirt you would be more comfortable." I stared in a friendly way (grrrrrrr, I wanted to rip his head off, not worth it) and locked my jaw shut. I would have put him in his place, I didn't want everyone within a 10 mile radius knowing I had Lupus, and FM.
You are right, we have nothing to hide; we know why we are using protective clothing, and equipment. I am trying to develop a thicker skin; not always easy in California where in the Summer I stick out like a sore thumb fully clothed with hat when everyone is running around in trunks and bikinis/shorts. lol.
It sounds like you are more comfortable and happy with the filters. I am very happy for you. Keep up the humor and the imagination. lol. Keep us updated.