Vampirism?

[BUFFY]

Hello All:

    I just started exhibiting symptoms of sjogrens this past December.   I have dry eyes, rosacea, ocular rosacea and dry skin.  I was looking forward to the summer so that my skin wouldn't be so dry and also it's more humid in the summer, thus more moisture.  Well, here it is only March and I'm afraid to go outside due to the sun!  I've always had mild rosacea, but since I've now gotten Sjogren's, it seems to have gotten worse.  Is that the norm?  I'm either turning red from Rosacea or the sun, I'm not sure which.  The only medications I take are restatis and mucinex, just plain mucinex, not mucinex d.

    Several days ago I got a little sunburned, I think, in the late morning/early afternoon, and I put some sunscreen on my face, which my face didn't like at all!  I have an appointment to see my dermatologist tomorrow and will ask her what sunscreen I should use and also talk to her about my rosacea. 

     I have had problems with my right eyelid burning when I've used warm compresses on them.  I've since given up.  Yesterday the strangest thing happened.  I was out and about, making sure that I was bundled up like the uni-bomber since it was sunny out, had a hoodie, jacket and gloves and sun glasses on, my face never flushed at all (my eye doctor told me to watch what I'm eating) but at one point, I forgot the sun glasses and had my regular transistions glasses on.  I think I only had them on for about 10 minutes or so, it was just a short ride home for me from my previous destination, then I realized when I got in front of the house and quickly put the sun glasses on.  Checked my face in the mirror, still no flushing, but later that evening, decided to check my eyes too, as I constantly have problems with them.  My right eyelid was burned!   I also noticed that my right hand seemed a little sunburned too (I had taken my gloves off as it had gotten so warm out, and I guess the sun was on my right side.)  I saw my regular eye doctor today and he told me no damage done.  He said he's never seen anything like it.  (I also have a specialist dry eye doctor too).

     I went to work today, (only my second day back to work since I've had Sjogrens - I've been out for more than two months) I hid my right eye behind the hoodie, and wearing sunglasses so essentially was driving with one eye.  I felt like a vampire!  When I came home, I drove the same way, as in the morning I'm driving east and in the evening, driving west.   I even bought a new pair of sunglasses today from an optician shop, they deflect 100% of the UV rays, and they are polarized.  Still, I'm not sure if my eyelid got more burnt, as it takes a while for the burn to show up, but I can tell you that my right eye really hurts.  Does this mean that I'm going to be stuck in the house all spring and summer???   How am I supposed to work?  How am I supposed to do anything during the day?  Do any of you have sun sensitivity like this and get stuck in the house all day?  If you don't work, what about appointments?  Have any of you ever burnt your eyelids from the sun?  I cancelled an appointment I had early this evening just because I didn't want to be out and about. 

     I'm going to see a car window tinting place that my mechanic recommended tomorrow (I'm only working part-time this week and next, but go back to full time the week after that).  I've heard the tinted car windows can reflect 99.9% of the sun's rays as well, and you can go very dark as long as you have a doctor's note. 

     This is really freaking me out, if it's not one thing, it's another!   

[Joe S.]

REI and other outdoor stores have spf 30 and spf 50 clothing. Sun glasses help. Some states have limits on tinting.

from Buffy the vampire slayer to Buffy the vampire?

Yes it is challenging when you are a morning person to live at night.

[litliwlowa]

I'm going to see a car window tinting place that my mechanic recommended tomorrow (I'm only working part-time this week and next, but go back to full time the week after that).  I've heard the tinted car windows can reflect 99.9% of the sun's rays as well, and you can go very dark as long as you have a doctor's note. 

if you live in a state that requires inspection at tag renewal, do check your state regulations on window tinting. I know NC has pretty strict requirements on that.

[BUFFY]

Yes, I just read up on it.  New York has some of the most strict laws on tinting.  However, I think I do have a legitimate need for it.  I think if I can get my dermatologist or eye doctor to write a letter for me, I should be okay.  I noticed even my hands got a little red also, the only other part of me besides my face that was uncovered.  I had taken off my gloves as it had gotten so nice and sunny out.  Was mulling over what to do until I get the tinting, perhaps white cotton gloves?  What has become of me?  Joe, I'm hardly a morning person, but I do have to work for a living, unfortunately.  I've come to the conclusion that this is a disease of (mostly) white, rich, ladies or people who were lucky (unlucky?) enough to get this disease when they were retired or were old enough to retire. 

[Joe S.]

It can be surprising to learn how many get this when they are young. It does not dicriminate about race. It is somewhat sexist though. If I had the odds of winning the lottery that I do for my AI diseases, I would be very rich. AI disease runs rrampant in my family. At reunions my cousins talk of best soap for dry skin, what do you use for dry eyes or mouth, how are you managing your fibro, etc.

For a number of us, select symptoms manifested as tweenys. This made high school and college a challenge. While I have had severe problems since 1983, I am now almost 62. I have not been granted disability for this. I go on social security in September.

I was lucky to get disability from the VA for my PTSD. I was discharged in 1972. In 2013, the attorney I hired found a general with high enough clearance to look in my file. Then disability was granted.

[irish]

I don't have all those problems with the sunglasses and wear UV ones over my glasses.

The big thin I do is carry bath towels/hand towels with me in the car. I place one across my thighs above my knees when wearing shorter pants, etc and I place one hand towel over each arm. I sort of hang them over my shoulder and let them drape down over my arm. Suntan lotion on the face and top of the hands always.

I may look weird, but this has saved my life when I am driving. The face is the hard thing to deal with when the sun hints you to and from work. Maybe a smaller piece of cheese cloth tucked into the sides of your glasses would be just enough to keep the sun off but yet allow you to see. I t would only have to be a smaller strip wide and not so long. White is also good to reflect the sun also. Good luck. irish

[BUFFY]

Irish, you mean sunscreen or sunblock don't you, not sun tan lotion?  Thanks for the tips regarding the towels.  I take it you have also gotten sun burn in your car too?  Do you also have rosacea? 

Yes, I guess you're right about race Joe, after all, Venus Williams is one of the latest celebrities to be stricken with it. 

[quietdynamics]

If you need tint on windows.. there are films you can apply that are not opaque, and would only need to be applied to side windows of car. Polarized wrap-around sunglasses would be a plus. A/C blowing in face or windows down, wind dries eyes.
What has dermatologist recommended?

"Most car manufacturers install laminated windshields that filter out ultraviolet light. Rear and side windows are typically made of nonlaminated glass, which filters out UVB light, the chief cause of skin reddening and sunburn — but not UVA rays, which penetrate the skin more deeply and also cause harm. "

I have a Dx of  ocular rosacea and find taking low dose aspirin at night helps. On rare occasions I will take one during the day. The rawness and red/swelling,edema is a response of inflammation. *I learned this reading a Dermatology Journal article about roseacea.
I follow an anti-inflammatory diet. Sugar for whatever reason causes my eyes to swell, become inflamed.. so no sugary desert.

What does Rheumatologist say about symptoms?

I see a corneal specialist on April 29th.

[irish]

Buffy, Yes, I meant sun block. I use the 50 with good luck. No, I haven't had sunburn in the car for years as I always keep covered. I also will wear a mans light weight yellow long sleeved shirt to protect my arms and will use the big bath towel on my legs when I am a passenger.

I don't allow myself to be uncovered cause I know I will burn from past experience. When I get exposed to the sun I get a hot burning sensation deep in my tissues and know that if I don't cover up a burn will come. The sensation I get is painful and almost will feel like brusing also. My doctor explained it to me---seems that people with autoimmune disease have a chemical in their blood or tissues that over react to the sun. Good luck. Irish

[LeoraRufus]

Buffy (one of my favorite  shows ever btw):

I've been diagnosed with ocular rosacea for many years. I'm on disability so it didn't matter when I changed my sleeping to avoid the sun. I shop for groceries at 7am. And in the evening I do the rest. If I've been out in the sun I feel terrible for days after.

I wear hats, sunglasses, and cover up as much as possible. I make my doctors appointments in the morning.

To keep my skin from flushing I keep the temperature low. I do warm eye compresses but keep the water warm not hot.

[Deb 27]

Buffy, Before I got diagnosed with sjogrens, I swore that being in the car driving or riding, made me sick. I never knew why. I have light olive skin and don't burn easily. But recently, we got a new car and it so happened to have tinted windows. Well, I can say it's made a huge difference.

But, I have got to get some clothes with SPF. I am forever forgetting my sunscreen and the next day I wake up feeling awful. Ugh!!! I get so mad at myself. It's just easier to wear clothes with SPF, long sleeves and always keeping a hat with me.  Now that I know I have sjogrens and RA, this all makes sense.

I love the nighttime too! You can go out, enjoy the outdoors with no worries! It's so funny because when I was young, I lived outdoors in the sun. In the old days, we didn't know about sunscreen. A shame b/c I have a fair amount of sun damage that didn't show up until my 40's.