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tintin28
12-28-2007, 04:08 PM
Hello all,

This is the first time I've posted on the net--guess it is also the first time I've had Lupus so everything is oh so new. I've read almost all the posts here and I am feeling more positive about things.

I am 28, male and had MCTD since I was 21. Before July this year I only ever had pain in my lungs and my joints--I felt I was managing it. I went to the gym regularly, felt great and have come off all meds for 2 years. This July, my wife and I went out to an outdoors spa and soaked in the sun and sulphur pool for 2 hours. Right after that, I had the malar rash, fever and my ears looked like they were peeling off my head. Not nice.

After 2 weeks my doctors told me I now have Lupus (SLE) and I am highly photosensitive. I am now on pred, plaquenil and calcium.

I went through a period of low--especially when I had to look in the mirror. Yes, although I'm a bloke, I have to say I do care what I look like. I am a university academic and so having to stand in front of 200 or so people with what looks like to be plague isn't very nice at all. Luckily my students are understanding and mature about it all (something I can't say for the general public, considering the types of crap I hear people throw at me).

I have now accepted the fact life is going to be different and it's a matter of managing my symptoms.

I do have a few questions I hope someone to shed some light on:

1) I found that driving in the car can give me a rash--so now I have installed lovely UV filters on the windows and things are great. The problem is my house--we bought the place for its lovely natural lighting. Now I am stuck in my dark study (boarded up with cardboard) for most of the day until the sun goes down. UV filters for the whole house isn't possible as I have a lot of windows--and they cost a bundle.

My first question is whether fabric curtains do anything when it comes to UV blockage? I have researched on the net and all I found was a study in the 1980 that compares UV penetration of cotton and polyester (close knit polyester won btw). What sort of window treatment do you guys use? I am just confused because I know even though the curtains may be "blockout" for visible light--the UV may still be coming through. Is my cardboard dungeon really stopping the UV? Surely--someone has investigated UV penetrative strength through different materials SOMEWHERE (I've seen more obscure research in my time)~!

My second question is about discoid lupus lesions. I know what they look like and what sort of damage they can do. I wonder if a prompt treatment of steroids can usually prevent permanent scarring (e.g. Betamethasone cream...)? I already take all the precautions I can take--sunscreen, hat and avoid bright areas (and that's when I am INSIDE my home~!!!)

Thanks for reading my rant--I can't help but go into the long winded lecture mode. Anyhow, it's a little late for a Merry Christmas so I'll wish all of you a happy new year instead~!

Saysusie
12-29-2007, 10:51 AM
Awnings over your windows will cut down on heat levels in the interior of your house and will also block UV rays. They are much less expensive than doing entire window treatment with UV material. Window awnings that are made from solid, outdoor roofing materials provide the highest UV protection. However, most window awnings are made from canvas like materials and the UV protection level will depend on the tightness of the weave, the color ov the awning and wear and tear on the awnings. Should you choose this option, try to find a label or guarantee of a UPF 50+ for any awning material. Shrubbery and Trees can also help to lessen UV rays in the home.

I've heard that shutters on the windows work well also (They need not be real wood). They can be turned up to let in light, but block UV rays. I cannot guarantee this, I've just heard others say that it works for them!

With reference to discoid lesions, the treatment usually includes steroids along with hydroxychloroquine (usually Prednisone and Plaquenil). Plaquenil takes several weeks before you see its benefits. Therefore, doctors prescribe Prednisone to speed up the process. The two drugs together are generally very effective and often, the lesions do not return. Depending upon the type of lesion, sometimes scarring cannot be avoided. However, over time, the scarring can lessen until you cannot see them unless you are looking for them (mine are almost invisible now!).

I hope that I've answered your questions. Let me know if you need anything further, I will try to help you as much as I can.

Peace and Blessings
saysusie

tintin28
12-29-2007, 01:23 PM
Wonderful~! Thanks for your reply--I will investigate the awnings . I remember having things called "roller-blinds" in Australia--they work great--like a metal shell over the windows. I am now living in NZ (just moved here)--and because of the cold--houses here have all their windows arranged for maximum sunlight (I am guessing they have areas in the States that are the same). My place had no curtains--so it's a greenhouse at this time of year (our summer)

I have shutters for some of the windows--unfortunately the shutters all have gaps where direct sunlight pass straight through. Sometimes I end up with weird vertical and horizontal rashes sitting in front of one. :)

I guess I am still trying to work out how much sunlight I can take--I remember when the flare began just a flash of sunlight on my skin is enough to get me feeling crap--along with the rash the next day. Reading the posts here makes me think this improves with time.

As for the meds--I have learnt the lesson--I'll not go off my meds again. I guess if I didn't stop the plaquenil back when I had MCTD--it is less likely for it to evolve into full blown Lupus. I guess if there are people here with MCTD or undiff CTD--I advise to stay on the plaquenil even if you feel like you can bench press a truck--and stay out of the sun~!!

Numpty
12-29-2007, 04:32 PM
I'm not much help! Am still waiting for a diagnosis of whatever's wrong with me but can so sympathise with the feeling of having the plague. People treated me like a leper when I first got my rash on my face (although my dermo has apparently never seen anything like it ~blinks~).

Also, I live in Scotland where it rains most of the time and heavy curtains and window blinds are usually deployed to keep out your nosy neighbours more than anything else :lol: so am not much use on advising you on window coverings on your side of the world!

But I wanted to leave a note to say thank you! Reading through both your posts made me laugh (ahem, so sorry if you werenít meaning to be funny :oops: ). You seem to have such a light-hearted approach to things and I think itís a lesson that I could do with remembering from time to time when I feel down about all my symptoms.

So, thanks again! Hope you get your house sorted out soon and best wishes for 2008!

C x

tintin28
12-29-2007, 09:54 PM
Hey Numpty--thanks for your reply~!

Oh yeah--the plague-look is in--when it was in full swing I reckon I would fit nicely in a zombie movie. Only my lifestyle is more like a vampire at this stage.

Your DERMO has never see the lupus rash? Man, that is a worry. I haven't been to a GP in NZ until I got my flare--and no offence to young doctors (I am "young-ish" myself)--but my young GP told me it was a fungal infection and said my ears must been a bacterial infection. I figure I musta been one of the luckiest blokes alive to have picked up TWO different infections from one dunk in the thermal springs. (wow--and my head wasn't even IN the water)

Yeah--sometimes you just have to laugh at things. Someone obviously thought life was just way too easy for me and decided to raise the difficulty level. I have tried moping around feeling down--somehow it just doesn't help. If I am gonna be stuck with this lupus thing, I would have as much fun living with it as I can...

Hey, it's a perfect excuse for sleeping in~! Doesn't get me out of chores though.

Scotland? All my students told me I should move there, nice and cloudy. The Aussie/NZ sunshine is not looking all so lovely anymore.

Faith
12-29-2007, 11:41 PM
Hi tintin28,

I have to agree, I was laughing while reading your posts and, almost on the floor rolling. We have all been there. lol. There is a material by the name of Suntec (or Suntect) that Coolibar makes their clothing from. I have seen this material on ebay. If it were me, I would purchase the fabric and find a seamstress to make window covers for them. The other option is anything out of nylon is also sun protectant.

Possibly another option to escape from that lonely, dark cave of a study, is to hire someone to put on UV window tint. lol. It allows maybe 2% of light in. I live in California and ended up having all my windows and sliders with uv film. The only description I can give you is when you look at the film/door, my reflection is mirrored on the tint. It apears as if I am looking in a silver mirror.

I hope this has helped. I hope you can escape your dark room soon, and wish you the best of luck.

Take care,

Faith

mnjodette
12-30-2007, 05:03 AM
Tintin28, you have my sympathy! I'm not super photosensitive, but am still very cautious about exposure to sunlight. I live in northern Minnesota (in the US) and we also build our houses to face South with lots of windows - that's just what we did 10 years ago. Had to cover up a wall of windows about 18 feet high; 30 feet wide after I got sick. Used some honeycomb blinds with a uv filter lining on the outside. (They look white outside; a deep burgandy inside.) Not cheap, let me tell you! But, you gotta' do what you gotta do!

tintin28
12-30-2007, 12:47 PM
I have managed to convince the wife that living in a dark study--especially over Christmas and New Year is not ideal--so we are forking out for some UV filters for the living room and the bathroom. At least I have somewhere else to sit~! I can't wait~!

As for my bedroom and my study, I have to stick with my cardboard dungeon and thanks to Faith I now know what material to use as curtains. :)

I see all these precautions at home as "saving" up my UV quota for doing the stuff I really like~!!

Faith
12-30-2007, 07:35 PM
Hey Tintin28,

I am glad you talked to your wife and have convinced her to cover those skylights. It's really hard for spouses to understand unless they have been through the flares, break outs, etc. Honestly, nylon material will work just as well as the Suntec material. You could probably find a solid color of nylon that your wife likes to make into covers; also the darker you go the better. I have a neighbor that used the spring curtain rods in her skylights and had the covers made to fit exactly the correct size. Check out the Coolibar website if you like venturing outside without the skin reactions and it lists the material type they use (Suntec).

Do you react to uncovered flourescent lights? I ended up changing mine out to regular light bulbs due to my reaction to uva/uvb light. I found out it's not worthing saving a couple of pennies per month compared to having a flare.

Let us know when you have the covers in place and how well it works out. It sounds like you are on the right track; I hope you escape your dark study soon. I really enjoyed your sense of humor!!

Take care,

Faith

tintin28
12-31-2007, 01:59 PM
Hi Faith,

My wife has been wonderful but the uv filters are going to set us back a grand or so--hence the long decision. I am competing with a new dishwasher so it was touch and go at one stage.

I think I am going to the fabric store and getting the blackest piece of close knitted nylon/polyester I can find and use that as the curtain backing.

I used to react to fluro lights early in the flare--over time it has gotten better. I try not to sit under them for too long but sometimes being in a meeting is unavoidable. I turn off all the fluro lights in the office and also at home--I don't use those energy saving bulbs and went back to the good old incandescent ones.

I am waiting for those flashy LED lamps to become more affordable then will purchase a few around the house. They are single wavelength so are perfectly safe and energy saving.

Sometimes--especially with regards to uv I am not sure if I am being paranoid. Now with all these modern (squishy) houses--you cannot avoid sitting close to a bright window all day--living at home is just as bad as running around outside--but a heck of a lot less fun. :)

Faith
12-31-2007, 10:57 PM
Hi tintin28,

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.

Take care,

Faith

tintin28
01-03-2008, 07:04 PM
Hey Faith,

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?

Faith
01-03-2008, 10:06 PM
Hey tintin28,

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. . . . .

Take care,

Faith 8)

tintin28
01-04-2008, 02:39 PM
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.... :)

tintin28
01-04-2008, 02:40 PM
PS Over here we can't claim medical expenses off our tax.....sucks eh?

Faith
01-06-2008, 06:01 PM
Hey Tintin,

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)

tintin28
01-06-2008, 06:30 PM
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.

Faith
01-06-2008, 07:03 PM
Hey Tintin,

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.

Take care,

Faith 8)