Saturday, September 25, 2010

Keeping Myself in the Dark

Autoimmune patients frequently are told to stay out of UV light. Lupus and Sjogren's patients particularly, although other autoimmune diseases also can result in dangerous and painful flares when sunlight damages cells and causes an immune response.

When I was younger, I would go out into the sun a lot. I'm an outside girl and I hate being cooped up inside. Even though I do actually tan very easily, I would go outside and come back in with inflamed skin that itched. Sometimes it would turn a little pink, almost like a
sunburn - but different. Not bad though. Because I had that first diagnosis of Lupus, I assumed that's what it was. Then I was *undiagnosed* with Lupus (blunder) and the rash was then a mystery. Eventually the rash turned into nasty blisters and my skin would come off in chunks - so not attractive, and surprisingly painful. My skin got thick and itching was a constant battle for me. When I was re-diagnosed with Lupus I was warned to stay out of the sun at all costs. I began to stay inside, but even then it took many months to heal and for the itching to stop. My skin is still thick along my neck and upper chest - a lasting sign of what I went through for those months.

I found I flared when going into stores for long or if I drive for more than an hour or so, regardless if I have sunscreen on. The lights in stores are very bad about producing uv light waves that hurt autoimmune patients. I already wore sunglasses because of serious intractable Migraines triggered by fluorescents and other types of lights. I began to wear sunscreen, but paradoxically found that it also made me sick - some chemical I suppose
I don't tolerate well.

Then we decided to get really serious about it. We had lived for about 10 yrs or so with 'attractive' black trash bags hanging in the windows of the rooms I frequented like the office and bedroom, in an attempt to block all the light. It worked, but just so you know, this is an extremely unpleasant way to live. I kept thinking I would get better and we could take them down and live normally again. That didn't happen so we removed all the windows in the house and had them replaced with extremely low UV, tinted windows, and for the first time in years I could open my curtains and see outdoors again! I wish I could convey the joyful feelings that went through my mind when we changed out those windows! I had always taken windows for granted, but I don't anymore.

When I go outdoors or into stores I wear my long hair down around my face (I can't tolerate hats), and long sleeves. Sometimes gloves. Never shorts or flip-flops. Although I have an in-ground swimming pool, it hasn't been used in 3 years which makes me almost want to cry as I used to swim every day from the time I was not quite 8 yrs old. I try to go
outside only in early morning or at dusk and try to keep my outdoor time to a few minutes instead of hours.

I'm always looking for new ways to be able to go outdoors or enjoy the sunshine without actually hurting myself.

How do you keep the uv rays from causing problems? What are your favorite products? Techniques? Tricks?
Comment by Amy K on September 26, 2010 at 1:27am
Truly, Ellen, you have endured so much. How you got by without the light from the windows for so long, I will never know, but I am so glad you have your windows now!

About a week ago I spent the whole day in bed, and I can't tell you how often I gazed out the window and found some comfort in seeing that the sky was a vibrant blue and watching how the sunlight sparkled on the leaves of the trees. I truly do no know what I would do without windows on days like that!

This would be such a tough challenge. I wonder if there are sunscreens that are paraben free, fragrance free, etc. that could be tolerated? Can you wear linen? That tends to be cooler than a lot of other fabrics during the warmth.

I sure wish I had some good ideas for you and the other people who suffer with this kind of sensitivity.
I have a tendency to get rashes and turn red real easily, even if I'm not burned, the sun brings out the red in me. This Summer, on more than one occasion, I had people tell me I was getting burned and that I should take cover, but it was just the redness showing up. I knew I looked funny, but the sunshine and the pool water felt so good to me! For me, the redness would fade later when I was out of the direct sun.

My heart aches knowing that so much of what you enjoy is outside and that you are unable to enjoy it like you desire!

I found this article that compares sunscreens and the three brands that seem the best suited for your needs are: JASON Sunbrellas Sunscreen, Kiss My Face and Desert Essence Organics Age Reversal Mineral Sunscreen. They have few ingredients and are both fragrance free and paraben free. Perhaps you can find out even more about them and if anyone you know has had success with them?
Comment by Ellen S on September 26, 2010 at 1:52am
OMGosh Amy, that is so wonderful! I have tried looking and asking people about what works for them and doesn't have the nasty chemicals that I seem to react to. I still am not sure exactly what it is I'm reacting to, so that doesn't make things easier. Someone told me Dr Mercola had some sunscreen that doesn't have a lot of that nasty stuff in it, but I haven't done any research on it yet and have yet to talk to anyone who has tried it.

Thank you so much for these ideas! They're the first I've gotten after all this time...
Comment by Ellen S on September 26, 2010 at 1:54am
Oh and yes Amy, I love linen :)
Comment by Amy K on September 26, 2010 at 2:29am
Ellen, I just listened to and scanned through Dr. Mercola's page that you linked to, and I have heard others say good things about him. I would be inclined to try his stuff first! Of coarse, comparing it to those others I gave you would be great, if you can compare the ingredients, etc.

Also, I know you said you do not like or cannot tolerate caps, but I wonder how you do in a big floppy woven sun hat? I can see it on you... and you look lovely. =) Just a thought!
Comment by Ellen S on September 26, 2010 at 3:02am
I haven't tried one recently, but things going on my head tend to trigger Migraine and tension headaches for me, so I avoid them. I even stopped putting my hair up in ponytails on bad hair days and when I go to sleep at night. I'm not sure that it has helped in that everyday stuff, but I do know I have to be careful. Somebody should invent a hat with an interior hat band that is soft and comfortable and doesn't trigger spasms for so many of us!
Comment by Dianne Rees on September 27, 2010 at 2:27pm
Just noting that Dr. Mercola (not an MD) has had some dings by the FDA as noted here and here. So as with all health claims on web sites, be wary.
Comment by Amy K on September 27, 2010 at 8:49pm
Good point Diana... it's very important to be wary and research the products and claims!
Comment by Amy K on September 27, 2010 at 8:55pm
P.S. I do not endorse any of the products I mentioned above, they are just products I came across in a search as I looked for a sunscreen that could be good for chemical sensitivities. =)
Comment by Ellen S on September 28, 2010 at 9:50am
Actually Dianne, I certainly don't endorse any physician personally, but do want to explain that Dr Mercola is a DO.

A DO is a Doctor of Osteopathic medicine. Osteopaths are also medical doctors, but their training goes further. Click the link above to find out more from the University of Rochester Medical Center that has a nice short description of the differences between the two. Osteopaths are highly sought because of their additional training. I think we might have 2 MD's here - all others (maybe 100?) are DO's.
Comment by Ellen S on September 28, 2010 at 9:53am
Dianne, I see that the links you provided were letters from the FDA re: labeling. Are there other things we should be aware of?

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