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The Sun is my worst {{{{{{ENEMY}}}}}}!!!

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Posted 1/13/2011 10:43 AM (GMT 0)
Hi everyone I’m new here my name is Johnny I am a Minister in the Philippines where the sun is very hot and very strong for at least 6 months at a time than comes rainy season where we basically stay sick with the flu or something for 6 months. Well as most of you know if we Lupus patients go out in the sun for any length of time at all were going to have to pay for it in one way or another well I have to travel very far for about an hour and a half into the city to preach on Sundays in jeeps without windows than by Monday or Tuesday I feel like am dying to put it nicely! Sometimes I think death would feel much better,

I am 51 years old and have been dealing with SLE Lupus since 2003 I have no major organ involvement yet thank God!!! But if I don’t stay completely out of the sun I am afraid that something bad will eventually happen! I can’t move to the city because it’s too expensive and I am only a missionary/minister which cannot afford it! My group of believers is few and dirt poor so no support there, but ministry is my life/passion so excuse the expression but it’s like I am darned if I do or am dammed if I don’t!!!

I would like to hear some I can’t take the sun story’s and just how it effects you and for how long???

I love you guys
God bless
Johnny

No Sun
nono
Posted 1/14/2011 1:40 PM (GMT 0)

Hi! Johnny,

 I know just what you mean about no sun. I think being able to sit out in the sun, (i live on a small lake in NY), is one of the things about my life with lupus that I miss the most. I get the sickest I ever get, with terrible flares triggered by even the briefest of sunlight, and within 20 minutes I am rashed and sick with even indirect sunlight. I once drove for 3 hours into the late afternoon sun coming through my windshield, and had to pull over to cover up with the car quilt tented over the steering wheel. Could you grab a shade tarp, canvass with some grommets and a few lengths of rope to keep in a traveling tote with you? If your jeep doesn't have windows, maybe you could tie the cover over your seat using the car frame and roll bars? I have to plan ahead, and take a white flannel sheet with me whenever it is warm out. Plus hat, plus sun barrier jacket with long sleeves, plus dark, dark sunglasses, (think Audrey Hepburn) and drag a chair into any shade I can find. Thank God for beautiful weeping willow trees. Sunscreen does NOT help, the itching and burning rash is worsened by any I have tried. I often wear hooded sweatshirts, too, and am grateful that I love being warm. Prayers for your ministry, and glad you are posting with us.

suetoo

Posted 1/15/2011 7:38 AM (GMT 0)
Bless you Sister

Thank you so very much for your prayers for me and my ministry, Wow I am so sorry that you are going through all of this horrible mess also, I think I have CNS involvement to because I cannot think straight at all anymore many times I am preaching and completely forget what subject I was preaching on! And the sun makes it so much worse!!! I do not own a jeep; I use the public long jeep buses here in the Philippines! Can’t really explain it but they have no windows!

Just keep trusting in our heavenly Father and he will make a way where there is no way!!!

Shalom and thanks again my Sister
Johnny
Posted 1/18/2011 4:49 AM (GMT 0)
Hi sorry to hear your having such a rough time with the sun. With me, I can spend a little time in the sun before I get all tired and just worn out. Does indirect sunlight bother your lupus too? Maybe try sitting on the "shaded" part of the jeepney, and of course covering up. I know how hot it gets there but even just putting something like a blanket or jacket over yourself to keep the sun directly off you, I know that helps me sometimes.
Good luck!
Posted 1/22/2011 12:59 AM (GMT 0)
Hello Thewatchman777, I am also sorry to hear you are having such a hard time dealing with the effect of the sun and lupus, and to live in the Philippines to boot, wow! I will send prayers out your way, I know how hard the sun can be and effect us, I am in michigan and if it were not for winter and gloomy days to break up the summer months I would feel terrible 24/7, I pretty much hibernate in the summer, and dream of the day that I can can move to Alaska where it is pretty much dark or dusk most of the year. But untill them, keep covered, I will be outside in 90 deg weather wearing long sleves and completely covered, I have had people give me looks and/ or comment, but hey its all about feeling well, and being well. good luck to you and hope you find some comfort. Oh and lots of vit D

God Bless

Kat :)
Posted 2/3/2011 4:58 AM (GMT 0)
I too spend a lot of time out in direct sunlight. (I live in Phoenix, AZ)  My friend gave me one of those newfangled umbrellas that are supposed to block out the harmful-to-Loopies rays by 20%. Unfortunately, I am very tall and the umbrella did not cover me completely.  My husband recently got me a regular umbrella, but one that is about three or four feet in diameter. I'm not kidding; we call it my "eclipse." 

This has really helped me a lot. There is even room to spare.

 

Posted 2/5/2011 3:04 PM (GMT 0)
The weird thing with me is that some summers I get no rash and some summers I get rashes.....crazy!

I like the summers where I get NO RASH as I can go out fishing, hiking, riding bike, etc.,

Anyone else have summers whereby the sun does not affect their Lupus?
Posted 2/5/2011 6:56 PM (GMT 0)
I get rashes most of the time, but whether or not I get a rash, I always feel nauseated in direct sunlight. If I continue to sit in the sun for more than a few minutes, I begin to feel exhausted, like my energy is draining out of my toes. If I'm in the sun too long, I end up with strange attacks of chest pain that land me in the hospital.

Yesterday we drove 3 1/2 hours one way for me to see two of my doctors in Southern CA (we now live on the central coast). I keep a shiny white folder in the car to hold between me and the sun, and even so, I ended up in bed as soon as we got home from sheer exhaustion. I slept for about 14 hours. I don't feel well at all today, but this is normal for me if I've been out.

Johnny I'm so sorry that you're going through this! You are definitely not alone, and the others have given you good advice about covering up. That's really all we can do.
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