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Sal_03

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 #1 
I find it hard to find any info about men and this bs disease.... any Guys have some good links, info, diets, etc......
Robinj

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 #2 
Hi Sal and welcome.
We have a veteran male member, DeBartolo. He is very knowledgable about lupus. I am sure he'll be able to answer some of your questions. [smile]

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Sal_03

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 #3 
Thanks robinj, and marymartha to tell you the the truth I really don't bother with the statistics of this disease anymore. I was diagnosed in June 2010 and have been seeking advice and understanding on how this affects us males but to my luck I always find the same results.... I've had some serious flare-ups in my past even one that landed me a 30 day stint in the hospital because it made my brain swell up and I was put into a medically induced coma... But all in all I'm glad I'm still alive and I thank god for this... Just tired of feeling tired not being able to enjoy the life a 26 year old usually does
Cakelady

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 #4 
Hi and welcome,

I was dx around your age. You can still do the same things you want to do or you did before but just a little differently and a little smarter.

I still go camping, many on the forum go hiking but just a little differently. Lots of sun screen, hats shaded areas etc. I love to swim so now I swim at night. I also try to garden at night or when the sun goes down. What ever you want to call it.

Listen to your body. If its screaming I need a nap then nap. Having lupus is not the end of the world. You just need to decided if you have lupus or does lupus have you.

But regardless we have your back.

Once again welcome.

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DeBartolo

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 #5 
best advice this veteran male can offer anyone, man or woman, is that they figure out a way to put together their own UVA1 phototherapy unit … for that, males usually have a leg up 'cause they usually like building things -- there’s an info thread in the treatment section ..... & if you have questions, please post them in the UVA1 thread, would very much like to keep all the info exchanges together…many thanks & welcome to the board.

in any event, 6 grams of a quality fish oil daily will help.

as will glucosamine sulfate if your knees are bothering you - note we said glucosamine sulfate, not glucosamine chondroitin, the stuff they sell in drug stores, chondroitin doesn't work, but sulfate does @ 750mg twice a day

best

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Sal_03

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 #6 
Thanks Cakelady and Debartolo!
jose01

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 #7 
Hello

My name is Jose, I was Dx 6 years ago, Have 28 now, and can tell that have some symptoms on the way. 

After trying to do all type of treatments, and According to my Doctors and my own experience, everything goes around a proper treatment and more important to have, the most Organic, relaxed and stable (emotional and spiritual) life possible. 

Eating healthy and Organic as much as you can, avoiding processed food, red meats and so (Can't deny that I love a Cheeseburger or any fast food), however, I do try to eat as less as I can, I rather now go to good restaurants or make at home the finest type of food against fast food for example.

Doing exercise at home or going to the gym is necessary (not contact sports to avoid any injury or vain cloth). I did change my regular transportation by a bicycle and move close to my work site. 

State of mind is the most important, trying to be calm all the time or relaxed, understanding the damage to the immune system caused by the stress of a regular life so better take it easy, yoga, pilates are really helpful.  

Hope this information works for you.

The most important is to be positive and count every day as unique, try to help other people as much as you can.

 Life is short even for people without LES. Best thing to do... Enjoy!  


IrishLass

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 #8 
Welcome, Jose

You offered some great suggestions. I can tell that you have a positive outlook. You were diagnosed pretty young. How did you get to be so wise? [wink] 

I'm glad you're here. I'm new here and I'm always looking for people to teach me how to have lupus. I'm very sincere when I say that. While I was diagnosed 8 years ago it wasn't until a little over 2 months ago that my lupus became serious and I became very sick. It's been so helpful reading the stories and experiences of others here. I hope you stick around.
Tmose58

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 #9 
I just joined this forum. Actually never been a forum guy. Just wanted to let you know I am a guy who has had Lupus (SLE) and all the fun that goes with it for 10 years now. My job is at an all time stress high so we will see how the next few months goes. I just turned 57 and rode my Harley almost 600 miles yesterday. Refuse to lose!
Robinj

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 #10 
Hi Tmose58
Welcome!
600 miles, wow! Do you not have sun issues? I'd love to get back on the Harley with my boyfriend, but I am terrified. The sun knocks me out.

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Tmose58

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 #11 
Hey there. Thank you Robin and Irish Lass! Robin I wear sun screen and a sun block rated breathable long sleeve shirts. I ride with a large group of current and retired Police and they watch me pretty good and make sure I take care of myself.
Robinj

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 #12 
That's encouraging.I actually was just checking out helmets yesterday. never wore one before, but the sun on my head & face would do me in! I'm looking forward to getting back on. We are going to try short rides when it is overcast and see how it goes. I am  tired of being stuck inside.
That's terrific that you have a great group of friends to watch out for you! What part of the country are you from?

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Tmose58

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 #13 
I am from Texas.  Just around the Dallas area.  I wear a half helmet but I use one with a short visor to help keep come of the sun off my forehead and nose when I ride.  I have been burned a few times and I am always sorry later.  I don't do well in heat so that affects me some but I try to fight through it.  I have a full face helmet and have never worn it.  I was going to wear it in the winter and it seemed like I was in a box and just put on some neck and face warmers and rode with my regular helmet.  I will try it some time. 
Robinj

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 #14 
I am looking at a half with a visor as well. Does it cover the nose fairly well?
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Tmose58

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 #15 
It is obvious to me when I don't wear visor. There is a difference in my sun exposure
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