how many men are out there

Morpheus · Posted: Mon May 14, 2007 12:18 am Post subject:

Hi utenutter, I think its more a case of awareness, not lots of people know about the various forums and online resources, I found this forum whil i was at university by accident, (or maybe it was just fate Wink

).

I was actually looking for any chat rooms that were lupus related.

Anyway, I still hold a full time job, Lupus hasnt affected me much where my career is concerned, I was a baker before this Smile

, which was rather strenuous, did feel it after 5 years of working in the bakery lol.

I am a web developer now.

How bout u?
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I intend to live forever, so far so good Smile

utenutter · Posted: Mon May 14, 2007 2:09 am Post subject:

yeah i still work full time, i work as a printer. lupus is starting to affect my work situation as i run a process where we use intense uv light to cure our coatings over the print and i started getting majour breakouts of the rash on my face when i run this process, i curretntly have a letter from my doctor saying i cant run it but they seem as they still want me to run, they really don't understand where i am coming from.

I am off to see my specialist tomorrow and i will have a talk to him and see if he can back up my GP's letter and present that to my boss and see what they have to say.

being a web dveloper is there much work in that? i suppose there would be considering how big the internet is these days.

shane

Morpheus · Posted: Mon May 14, 2007 2:38 am Post subject:

Yes there is lots of work in it, most companies these days are going for the web based applications, as these are easier and mostly cheaper to develop. Its not very physically straining, but sitting whole day can be tiring too <sigh> lol.
However u need some formal training and/or understanding of computer programming.
Not the same as web designing, which is much more creative driven.

all the best
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I intend to live forever, so far so good Smile

TERIOD · Posted: Mon May 14, 2007 9:25 am Post subject:

Hey Morpheus,

Ive recently gone to school for geographic information systems,which is mostly a web based program, 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. there is not a desk chair made that is comfortable enough, i sure made alot of trips to the coffe pot when i was working,
hang in there!!!
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Fair Oaks California

bunyip · Posted: Tue May 15, 2007 3:18 am Post subject:

bunyip · Posted: Tue May 15, 2007 3:30 am Post subject:

TERIOD · Posted: Tue May 15, 2007 8:25 am Post subject:

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,
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Fair Oaks California

brandy74 · Little Guppy Joined: 09 Mar 2007 Posts: 31 Location: TX

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

TERIOD · Posted: Tue May 15, 2007 7:50 pm Post subject:

Hey brandy how ya been, ok i hope #Wink2

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Fair Oaks California

brandy74 · Little Guppy Joined: 09 Mar 2007 Posts: 31 Location: TX

TERIOD · Posted: Wed May 16, 2007 5:17 pm Post subject:

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 Very Happy

if ya just want to talk to some one feel free to PM me if nessicary
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Fair Oaks California

brandy74 · Little Guppy Joined: 09 Mar 2007 Posts: 31 Location: TX

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

JD · Not So Newbie Joined: 30 Jun 2007 Posts: 9

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

Rahbuh · Posted: Sun Feb 17, 2008 2:07 pm Post subject: Hey

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

rob · Posted: Sun Feb 17, 2008 6:36 pm Post subject:

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