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Thread: how many men are out there

  1. #51
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    Quote Originally Posted by TERIOD
    Hey Morpheus,
    yes being chained to a desk is very hard with this disease, in fact i think that is one of the factors that sent me into a major flare, although ive had to give up work for now, and it is painful to move in a regular manner it hurts not to move also.
    I agree Teroid - in this business its extremely damaging to just sit there even without Lupus. You risk deep vein thrombosis and should at least walk around for 5 minutes evey hour. This is not so easy because IT work demands full concentration for long peroids.

    I think I've made myself ill doing just that - not getting up out of my desk often enough. I've noticed some open plan environments can do that to people. Everyone stares at everone else and people cant help but notice every time you get up and move around, and which discourages you from doing the right thing for your own health.

    I've been doing 3 - 4 hour stints every week day, slowly getting more and more fatigued. Ergo, I am in bed.

  2. #52
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    ya thats kind of the way it happened to me also, when i started looking for another job the stress really set in and bam, big time flare, although it wasnt a discrimantion thing, my internship ended the stress of setting all day working and worring about employment sent me for a loop, im sure that discrimination is there but fortunatley i havent had to deal with it yet
    i have to say good luck with that,
    Fair Oaks California

  3. #53
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    i think your right there's not that many males with it and or know about this site.

  4. #54
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    Hey brandy how ya been, ok i hope :squarewink:
    Fair Oaks California

  5. #55
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    Quote Originally Posted by TERIOD
    Hey brandy how ya been, ok i hope :squarewink:
    hey how's it with you?i'm o.k. we found out in nov. last yr. that my dad has dieabetis pretty bad along with lots of other problems(he got most of his leg amputated)sience all this started we've been talking about death,him dieing,etc(he's been pretty bad at times in the hospital) so that hasnt helped.geez look at me I'm talking up a storm.

  6. #56
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    sorry to hear about your dad, if you need to jabber were here for ya, the way i see it,l thats what this forum is all about, ya everythin is bigger in texas, why shouldnt they have more to say if ya just want to talk to some one feel free to PM me if nessicary
    Fair Oaks California

  7. #57
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    well thats what they say about tx.thanks I'll let ya know if I need anything.

  8. #58
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    Hi Guys,

    Seeing as the original question asked how many men were on this forum I'm going to pipe up at this point.

    I'm 24, male, from England (London if you're curious) and I started having lupus-like symptoms when I was about 15. The doctors couldn't find anything wrong with me other than I couldn't breathe because of chest pains, had a rash on my face and was constantly fatigued.

    Last year my mum was diagnosed with lupus (what we've now learned is discoid lupus) and when reading through the symptoms she advised me to go speak to her doctor as she recognised the symptoms that I've had. I've since been undergoing blood tests every 10-12 weeks since June last year, all of which have come back indicating lupus to some extent.

    The doctor, having initially laughed the idea of a male having lupus in my face, has now started to take it seriously (I hope), but the treatment I've had, and the number of times I've been called a hyperchondriac (yes, even by doctors) has really damaged my faith in the medical system.

    I'm now hoping that with the next set of blood tests they'll be able to tell me something other than 'yes, this looks like lupus' and actually tell me what I need to do to help myself, what changes I need to make, if any, and what type of lupus I've got. etc.

    Cheers,

    JD

  9. #59
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    Hey guys,

    It has been a while since I posted here. I am 41 and live in Campbell, CA. I was diagnosed in Oct 2006 after getting severely sick. I had a kidney biopsy in Nov 2006 that went horribly wrong. After 2 weeks in the hospital, 2 months of regaining my ability to walk and a year of healing, I am doing quite well.

    I have been really blessed. My body reacted really well to Cytoxin and I am now in remission. My health (besides a few aches and pains now and then) is great. I am on maintenance doses of CellCept, Plaquenil and Prednisone.

    Although I have connected with the Lupus Foundation in the Bay Area, I find that support groups are sparse and men's support groups even more sparse. I am not big on the online chat thing but would like to connect with other guys for mutual support and friendship.

    Let me know how things are going.

    Rob

  10. #60
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    Hey Rob, I'm Rob too! It's awfully quiet here in the men's section. I'm 40, and I live in Maine. I was diagnosed with SLE in 2004. I have flare ups every 3 or 4 days. Been on Plaquenil, and was taking Prednisone after I first found out. I stopped the Prednisone before it could cause too many side-effects. Feel free to PM me if you want. There is another guy here who is really fighting an uphill battle, STJAMES13 is his user name. He writes some really good posts. I'm rather new here, but from the correspondence I've had with him, I get the impression he's been around the block, and knows his stuff. A really nice guy. Anyway, it's good to see another guy here.

    Rob

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