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utenutter
03-06-2007, 04:33 PM
hello all,
just out of interest how many men are on this forum, if you do reply can you say your age and where you are at.




thanks


shane

ganesha
03-08-2007, 10:38 AM
I am in Colorado. I am 35 and have Lupus Nephritis. On lots of medications right now including prednisone, cellcept, coumadin, bactrim, enalapril, and aciphex. Feel free to ask anything else.
Peace
Brent

utenutter
03-08-2007, 03:11 PM
Thanks for the reply Brent sounds like you are doing all the right things good luck with the future , i am sort off trying to figure out whether i need to look at a career change to get myself away from uv light exposure but i don't know what to look into to try next big decision for me




shane

Henry
03-08-2007, 03:42 PM
I'm 44 and live in Georgia.
I've learned a lot from this board. I have an Undifferentiated Connective
Tissue Disorder that is Lupus like.

I've been in printing or advertising for 26 years. If you can find a shop
willing to train you in estimating or customer service you could stay in the
business. Having been a pressman, you have the base knowledge to move
into either of these areas, as long as you also have some computer skills.
Many times these jobs are not advertised, but filled through word of mouth.
Look up printers in your area, and physically go to the shops and drop off your resume and fill out an application.
A stint in customer service may lead to an opportunity in sales.
On the flip side, if you can get into another business that is less stressful, go for it. Printing is full of "I need it yesterday" deadlines, as you know. We all feel better with less daily stress.
Good luck

utenutter
03-08-2007, 08:45 PM
thank you henry,
that may have to be the way i go ,but my boss is a bit stuborn and dont like changes to much , i have had experience in this side iff it before breifly, but deffinatly worth to ask the question.



thank you very much


shane

brandy74
03-09-2007, 10:41 PM
wow it's nice/odd to see a guy/guys that have it too.

utenutter
03-10-2007, 09:07 PM
brandy 74 are you male or female ,
ithink i know the answer but double checking
i know that lupus is rarer in men but it seems that not many men get on this web site and ia it true what i read about lupus affecting men different to women



thnk you for your input much appreciated

shane

brandy74
03-10-2007, 09:24 PM
brandy 74 are you male or female ,
ithink i know the answer but double checking
i know that lupus is rarer in men but it seems that not many men get on this web site and ia it true what i read about lupus affecting men different to women



thnk you for your input much appreciated

shaneI'm a female.your right i'm sure if more men came on here it wouldnt seem as wierd. i guess thats what you meant?

utenutter
03-10-2007, 09:27 PM
brandy 74


your are obviously online now

where you at?

if you dont mind me asking

shane

brandy74
03-10-2007, 09:27 PM
just wondering shane how old are?

brandy74
03-10-2007, 09:29 PM
brandy 74


your are obviously online now

where you at?

if you dont mind me asking

shanedo you mean where do i live?tx

utenutter
03-10-2007, 09:31 PM
yes that is what i mean

utenutter
03-10-2007, 09:33 PM
what country you live in

brandy74
03-10-2007, 09:33 PM
oh was you wondering becouse I dont have my location on there?

brandy74
03-10-2007, 09:36 PM
untied states

utenutter
03-10-2007, 09:37 PM
just curious i am in australia as you can probably read and it it hot i can't go out side it sucks, cant go to the beach cant go for swim i was wondering if your in the same boat cause i can feel fior others



shane

brandy74
03-10-2007, 09:41 PM
just curious i am in australia as you can probably read and it it hot i can't go out side it sucks, cant go to the beach cant go for swim i was wondering if your in the same boat cause i can feel fior others



shanetx can be really hot too when I was younger i has a really bad time with not going outside in the sun well just outside.but as i got older I'm not into getting out in the hot weather.so yeah i was in the same boat.

utenutter
03-10-2007, 09:47 PM
so are you photsensitive as well? do you get rash etc. i tell you what, this forum is good isn't it, as you can speak to people who know where you are coming from and not to people who think "suck it up and get over it"

what time is it in tx (does yhis mean texas) now cause it is 2:45 inthe afternoon here

shane

brandy74
03-10-2007, 09:52 PM
so are you photsensitive as well? do you get rash etc. i tell you what, this forum is good isn't it, as you can speak to people who know where you are coming from and not to people who think "suck it up and get over it"

what time is it in tx (does yhis mean texas) now cause it is 2:45 inthe afternoon here

shaneyes sensitive to everything.rash and all.yes this is a great fourm I just found it last night.I think the sites great becouse at least people here are not like what I've never heard of lupus.in my neck of the woods here in tx it's10:52p.m. and then the time change
so how old are you shane?

utenutter
03-10-2007, 09:54 PM
i am 31,

brandy74
03-10-2007, 09:56 PM
ah 1 yr. younger than me so do you have lupus or just something like it?

utenutter
03-10-2007, 10:02 PM
yes i was diagnosed with lupus in dec last year but since being on this site and reading some people stories i think i have had it for some time now.
i have in the past three month had to change basically my whole life, how long have you know have lupus, so you having a late night to night ? have you been out ienjoying the night life or you cant veture into that as it is to exhausting for you.

brandy74
03-10-2007, 10:07 PM
yes i was diagnosed with lupus in dec last year but since being on this site and reading some people stories i think i have had it for some time now.
i have in the past three month had to change basically my whole life, how long have you know have lupus, so you having a late night to night ? have you been out ienjoying the night life or you cant veture into that as it is to exhausting for you.you do have to change your life style do a 180.I was dieagnosted at 12/13 that I had it but i think i had it for at least a yr. before then.i'm usally up this late well most of the time.I venture out into the night time when ever the urge hits me.it's harded for me now a lot harder couse about 12 yrs. ago I had a "brainsteam'stroke so that has slowed me down.

utenutter
03-10-2007, 10:17 PM
i am sorry to here that as i say i think i have had it when i was about 13-14 years old and i think i am one of the lucky ones, i dont venture out at night that much (not really a party animal, never have been but) i love my fishing ,camping, sports etc and overall i would say that is my biggest toll at the moment, i all so have alot of problems at work at the moment that need to be resolved, but if i keep myself heathy and fit i should (hopefully) beat this for t5he next years and still give my kids a good upbring

shane

utenutter
03-10-2007, 10:18 PM
as you probably noticed i am young at this and still have to fully get my head around it yet fully

brandy74
03-10-2007, 10:24 PM
no worries your just fine.

utenutter
03-10-2007, 10:28 PM
thanks for your support it trully is appreciated

better let you go nice chatting to you maybe this is something that can be done in the future setting up a actual chat section so you can talk directly to people on line,

keep well and i will be talking to you!


shane

brandy74
03-10-2007, 10:31 PM
thanks for your support it trully is appreciated

better let you go nice chatting to you maybe this is something that can be done in the future setting up a actual chat section so you can talk directly to people on line,

keep well and i will be talking to you!


shaneanytime you need anything just holla.nice chatting with you too.we'll have to see what we can do about chatting.talk to ya soon.brandy

TERIOD
04-25-2007, 05:35 PM
not that im happy to see other people with this disease, I was finally DX in dec 06 after fighting with it for several years, and after a stroke in 2003, ive had to quit working as a mechanic and going to school, at 44 no one seems to want to hire and i have to be truthful about whats going on with me healthwise, with all the drugs im on, its hard sometimes to remember what i even went to school for!!, im six months in on cellcept therapy and there doesnt appear to be any change except for bp and proteins, has there been any luck out there with ssd, like ive read in other posts, it seems as tho many people out there dont understand what this is like, im not liking the reality of this disease, what do some of you do to get over the mindset???? :shock: :shock: :shock: :shock:

TERIOD
04-25-2007, 08:47 PM
Well i hoping that there was more movement in this forum :roll: :roll: :roll: :roll: :roll: :roll:

brandy74
04-25-2007, 08:53 PM
not that im happy to see other people with this disease, I was finally DX in dec 06 after fighting with it for several years, and after a stroke in 2003, ive had to quit working as a mechanic and going to school, at 44 no one seems to want to hire and i have to be truthful about whats going on with me healthwise, with all the drugs im on, its hard sometimes to remember what i even went to school for!!, im six months in on cellcept therapy and there doesnt appear to be any change except for bp and proteins, has there been any luck out there with ssd, like ive read in other posts, it seems as tho many people out there dont understand what this is like, im not liking the reality of this disease, what do some of you do to get over the mindset???? :shock: :shock: :shock: :shock:I think a lot of people have it for yrs. before it's diagnosed partly maybe an even bigger part is becouse it's like so many others and it's so hard to diagnose.what kind of stroke did you have?I had a "brain steam"stroke about 12 yrs. ago.I'm currently on cellept have been for about 2-3 yrs. and if i wasnt on it I think I'd be in trouble.sorry to hear it's not working for you.

TERIOD
04-26-2007, 09:03 AM
I too had a brain stem stroke,with major ringing in the ears, nausea and dizziness leading up to it, well i cant say that i dont know the cellcept isnt working since im not even sure what its supposed to be doing?? although the tests show good numbers, i still feel like ive been hit by a truck, the docs tell me ill be going through this treatment for at least a year, i guess from what you say, it could be longer tho?? do you work?? i cant seem to gain enough energy to go back to work

brandy74
04-26-2007, 03:57 PM
I too had a brain stem stroke,with major ringing in the ears, nausea and dizziness leading up to it, well i cant say that i dont know the cellcept isnt working since im not even sure what its supposed to be doing?? although the tests show good numbers, i still feel like ive been hit by a truck, the docs tell me ill be going through this treatment for at least a year, i guess from what you say, it could be longer tho?? do you work?? i cant seem to gain enough energy to go back to workOMG someone else who had a brainsteam stroke no one i've ever talked to has had one.leading up to mine I was dizzy,headaches,and paralized on one side.i was always going to the e.r. for those but they NEVER found anything and did i tell ya finally one night they admitted me and that night in the hospital I had the stroke.isnt that crazy!the main thing the celecept is suppose to do is keep the lupus under control.no, i dont work.i used to babysit my nieces&nepews.but no I've never worked after the stroke it left me with a foot drop that I never got rid of.if you dont have to DONT push yourself to go back to work.to me that just makes things for you harder(I mean more tired).

brandy74
04-26-2007, 05:15 PM
forgot to add after the stroke i had I was on cytoxin for about 18 months.they tryed it in pill form but I just dont drink water very well at all and thats one thing they said you HAVE to do so they put me on I.V. form with anti nausea med.thank-god I only had to have it every month but man talk about worn out it would take me about all that time to recop then have to go back.

TERIOD
04-26-2007, 05:25 PM
thats pretty much what happened to me, i kept going to er and they couldnt find anhy thing wrong after blood tests, ekg's, spinal taps, and anything else they could throw at me, until one day i stroked out then everything went away, no leftovers for, but for quite along time after it i did nothing but vicodin and sleep

no talk about cytoxin yet so maybe things are workin like they should

brandy74
04-26-2007, 08:16 PM
isnt that a bitch when you go in and YOU know somethings wrong but they cant fin anything wrong. :mad:

TERIOD
04-26-2007, 09:00 PM
HEHE, ya it was but overall for a VA hospital i get very decent care, the treatment and care i get so far exceeds any private organizations ive dealt with so far, i guess im one of the lucky few that havent had to deal with bad va hospitals

bitch i like the way the forum changes words

Brian0025
04-27-2007, 01:55 AM
This is Men's Forum, no?

utenutter
04-27-2007, 02:24 AM
hello

i still hold a full time job and some days it is hard but i get through.i am probably not as sever as others though, if you need to talk about any thing i will have open ears, ha a good one.


shane

TERIOD
04-27-2007, 10:22 AM
This is Men's Forum, no?

ya but i would imagine anybody's welcome

brandy74
04-27-2007, 12:15 PM
sometimes angery female??????
and yes men are welcome.well it's not my board but I'm sure anyone with lupus is welcome.

TERIOD
04-27-2007, 01:18 PM
isnt that a *sometimes angry female* when you go in and YOU know somethings wrong but they cant fin anything wrong. :mad:

like most forums when you type certain words, the forums will automatically change them to a more politically correct statement, since you dont work do you collect ssdi?? ive been denied once and am currently under reconsideration, looking for tips

brandy74
04-27-2007, 03:14 PM
yeah I collect ssi or whatever it is.

Morpheus
05-14-2007, 12:38 AM
Hi all I'm 26 from south africa, and have had lupus for nearly 12 years

utenutter
05-14-2007, 01:09 AM
Well over all there aint to many of us on here that are male, i knew it was rare in males but not this rare, unless it is just not to many males have found this website.


hello morpheus, how are you, do you still hold a job at the moment? what are your interests?


shane

Morpheus
05-14-2007, 01:18 AM
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 :), 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?

utenutter
05-14-2007, 03:09 AM
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
05-14-2007, 03:38 AM
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

TERIOD
05-14-2007, 10:25 AM
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!!!

bunyip
05-15-2007, 04:18 AM
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.

shane

Dont want to sound like a wet blanket but....

As I write I am bedridden with a classic lupus 'flare'. Here for 3 days now, or is it 4. Headache, fatigue, shaking hands, pain, depression. The usual.
I've been getting worse over the last 3 weeks, and I've had a few days off sick already.

This morning I emailed the "boss" (I'm a contractor actually) to say I wouldnt be in today (2nd day). Email reply was we need to discuss the terms of your contract.

Oh yes here we go again.

Ok so I call him up, and politely express my dissapointment at his disability discrimination (etc, etc), that I'm not in any condition to discuss anything with him, except that I would like an apology.

Him: "Umm, no. At least I want to give you an apology face to face".

Me: "But you've offended me via email, how come you cant even apologise via email?".

Him: "I like to do these things face to face".

Yeah, right. We'll I guess I've just extinguished my only obligation to resolve the matter myself before dragging him off the the Equal Opportunity Commission. My formal complaint will be emailed overnight. Of course the justice is only token - the EOC does not award damages and the financial penalties are very light ($250-$2500) compare with what this will cost me.

I spent the rest of this afternoon looking for my next contract - disability discrimination is usually always fatal to a contract. I rang up an agent at 530pm and he'll be calling me tomorrow morning for me to decide which position I'd like like. At the moment my skills are currently in high demand. So I dont have to put up with people like this (at the moment, that is).

But I really despise these cowardly scum who take my illness into account in making decisions about "our contract" :x . Its bad enough my having this condition. I dont need these people to make my life hell. Its already hell.

Nuff said for now. I'll start this in a new thread and keep you all posted.

bunyip
05-15-2007, 04:30 AM
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.

TERIOD
05-15-2007, 09:25 AM
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,

brandy74
05-15-2007, 12:25 PM
i think your right there's not that many males with it and or know about this site.

TERIOD
05-15-2007, 08:50 PM
Hey brandy how ya been, ok i hope :squarewink:

brandy74
05-16-2007, 03:11 PM
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.

TERIOD
05-16-2007, 06:17 PM
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 :D if ya just want to talk to some one feel free to PM me if nessicary

brandy74
05-16-2007, 08:11 PM
well thats what they say about tx.thanks I'll let ya know if I need anything.

JD
01-30-2008, 11:43 AM
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
02-17-2008, 03:07 PM
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
02-17-2008, 07:36 PM
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

Rahbuh
02-17-2008, 10:50 PM
We can be Rob West and Rob East! 8)

It is interesting when I tell people that I have Lupus because half of the time their response is, "Isn't that a woman's disease?" So, I can understand why a lot of guys don't want to talk about it.

So I'm curious with you being in Maine. Does the winter cold aggravate your symptoms? Being in California, the winter temps only get in the mid-30s but I feel more sluggish and get cold real easy. I feel a lot better during the summer with the hot weather. I know that someone posted at one time that it was the opposite for them. I am going to Cancun in August, so we'll see how the temps affect me there.

I had a check up with my rheumy on Friday. She was talking to me about taking DHEA. She said that a lot of Lupus patients who take it say that it helps to reduce their symptoms. She said that it helps with the fatigue. I want to start working out again to get back into shape (especially for cardio). I was thinking of trying it to see if it helps any. Ever heard anything about it?

By the way, the same goes on PM for me.

JohnnyBGood
07-02-2008, 05:42 AM
I am 39 and live in Mississauga, Ontario, Canada and I have SLE.

I don't know any other people that have or have admitted to having Lupus.

Saysusie
07-02-2008, 09:08 AM
Hi JohnyBGood :lol:

Welcome to our family and to the Men's Forum. I'm sure one of the guys will be in to chat with you here. Just wanted to let you know that you are welcomed to this family where everyone admits to having this disease :lol:

Peace and Blessings
Saysusie

JohnnyBGood
07-02-2008, 10:19 AM
Thank you Saysusie. It's good to know that I am not alone and that I have friends out there that I can ask random questions too and who understand.

I am sure you've seen me around asking questions in other forums on this site.

StuwiW
10-21-2008, 02:12 AM
Im 23, had lupus since I was 17, Im from South Africa

Saysusie
10-21-2008, 10:56 PM
Hello and Welcome StuWiw;
I see that you've already participated in some of the other forums here and that you've met Rob, our moderator. He is a wealth of information from a man's perspective and he is a cherished member of this family. I'm sure that you can call upon him and find that he is always ready and willing to help. Otherwise, every single member of this family is here to help you in any way that we can. I hope that we can help you whenever you need it!!

Peace and Blessings
Saysusie

StuwiW
10-21-2008, 11:31 PM
Hi Saysusie

Thank you soo much, I can see that you guys are wonderful. I will surely make more posts here as i have lots of questions.

TobyJug
01-30-2009, 07:46 PM
ehhh I have not read through the whole thread but thought I answer to the original question..... :lol:

I am TobyJug a 27 year old male, currently residing in the UK and have lupus amongst some other things.....

Be good to be able to talk to some blokes in the same situation.....

scubagramplit
01-31-2009, 05:43 AM
you are right, not to many guys post here, I do a bit of checking through the rest of the site on occasion to see if some topic jumps out at me that I am also having trouble with. welcome.

TobyJug
01-31-2009, 05:56 AM
you are right, not to many guys post here, I do a bit of checking through the rest of the site on occasion to see if some topic jumps out at me that I am also having trouble with. welcome.

mm weird that really that us blokes are not really talking about it..
specially as mentioned before people understand it less because they think it's a womans decease.... They just think u look fit and healthy..

also being a bloke and a lot of the time not being able to do what u used to or want is not easy.... not easy to do and not easy to explain... (well I just don't explain anything to anyone... ) lol

I wudda thought that wud be a good reason to chat with other people in the same situation......

scubagramplit
01-31-2009, 06:54 AM
Yea check, I am blessed in the fact that I get a lot of understanding from my family, friends and coworkers however there are a lot of time that I am apprehensive. never knowing how you are going to feel from day to day and hour to hour.

TobyJug
01-31-2009, 06:59 AM
Yea check, I am blessed in the fact that I get a lot of understanding from my family, friends and coworkers however there are a lot of time that I am apprehensive. never knowing how you are going to feel from day to day and hour to hour.

Yeh I know that feeling... I am getting support from family and gf but I don't think people really understand what its like....

I don't tell many other people or friends because when they read up on it they feel sorry for u....
and I don't want that so I just pretend I am fine.... lol

Most of the time that works well I can hide pain and stuff no problem does take it out of u tho.....

What kinda work do u do?

scubagramplit
01-31-2009, 07:12 AM
I am a lineman for a local utility, I work as a serviceman which basicly means that I take care of a designated area. I run by myself. it could be a lot worse however in storm situations it sure does take a tolle on me now, I used to be able to go 24/7 for four or five days strait, that aint happnen any more.

rob
01-31-2009, 07:28 AM
Hello,

I'm Rob, and I'm a Moderator here. Most of the time it's only myself and one or two other guys who are here and active. It's good to see more men become members. I love the ladies here, but sometimes you just have to talk guy talk.

Anyway, I was diagnosed with SLE in 2004, and MS just last year. I used to own my own business. I worked in the field of smallarms design. After the SLE diagnosis the business, fiancee, and most everything else ended. I moved back to my childhood home in Maine to start a new life, and so far so good. I'm on full disability now, and that's OK. I know my limitations.

We do get quite a few men who become members here, but they don't seem to be much for talking, and for whatever reason they don't stick around. It's good to see some new faces here in the mens forum. Welcome to our group, and feel free to hang out, vent, or just B.S. for awhile.

Rob

TobyJug
01-31-2009, 08:33 AM
scubagramplit:

yeh I think I know what u mean regarding the whole used to go 24/7 thing I used to be like that..... but no go now....

Glad to hear u are still in a good job tho...
Sounds like an interesting job too that....

Hey Rob...
Sorry to hear about your MS too mate, that is a bummer....

Yeh I saw that there are over time loads of new people who after a few post just seem to give up...
I was browsing the forums for a bit.... :twisted:

I think that a lot of men think that forums like this are not for them...
I frequent a few offroading forums too and am a stayer on here me thinks.... :P so the forum better get used to the Jug..... lol only joking...

rob
01-31-2009, 10:50 AM
Hey Toby,

Sounds like we have a common interest. I have an 88' Toyota 4wd truck that I have been off roading with for many years now. I went to college in Colorado and have driven just about every high altitude unpaved mountain pass in the state. Lived in Arizona for 15 years and pretty much drove every dirt road there. My Toyota is pretty much stock except for the paint job and the tonneau cover on the back. Added a big brush bumper to the front for tooling around in the bushes.

I'm also into off roading on a small scale with R/C vehicles. I race a 1/6 scale 2wd gas buggy and a 1/8 scale 4wd gas CORR truck at a local track. I'm also into R/C aircraft. Now that we are getting a few more guys here, I'm thinking about posting a topic for us to talk about our respective hobbies and interests. Can't talk about Lupus all the time, it gets depressing! Is the truck in your avatar a Toyota or Nissan? Is there alot of good off-roading to be had in the UK?

Rob

TobyJug
01-31-2009, 12:33 PM
Nice...

Yeh it's an '90 pre-facelift 2nd generation Toyota Hilux Surf....
Japanese import.. the 2.4 TD..... Not a bad truck but pretty broke at the moment.... :( I love it really.... love the surfs... but I am going to look at a Land Cruiser 2mo ('95 4.2TD Amazon)

I did a lot of offroading in Australia when I lived out there and even more here in the UK..... if u like mud then it deffo is good offroading here..

I love the model ones but have no money at the moment.... but when the cashflow pics up I will be getting myself a nice tamiya....

Good Idea about the new forum/topic.... I agree with u might get more blokes talking too..... :o

Here is a few pictures of me in the truck......

oh I can't post links yet.....

utenutter
02-02-2009, 02:06 AM
hello all,
where did you live when you were in australia? i use to be in to the 4wd for years but have moved of them for a bit, still own one but more keen on my fishin at the moment,i want to purchase another rc car as well i think there great fun.
shane

TobyJug
02-02-2009, 03:05 AM
hello all,
where did you live when you were in australia? i use to be in to the 4wd for years but have moved of them for a bit, still own one but more keen on my fishin at the moment,i want to purchase another rc car as well i think there great fun.
shane

I had my home base in Perth and surrounding area...
seen a lol of the country like but Perth is my home.....I have traveled since I was 16 and never been homesick until I had been to Perth.... Since I left that area.... I know what homesick is....

I drove the 4x4 tours through the Kimberly's....

How come u gave up 4x4?
Saying that I love fishing too but not been fishing for a long time way to cold here in hte UK

utenutter
02-02-2009, 02:29 PM
hello.
Well i haven't actually fully given it up,i still get offroad when i can but when i was younger and only just got my licence after that for the next 5 - 8 years i would be offroad any spare time i had, i would be on the way somewhere,home from work,going anywhere i would find some sort off mud to play in, then a little later after that i moved to property and had my own playpen in the back yard and it was great, but now with my kids, they are a little bit worried about offroading so they get scared and makes it harder to get out,untill they get over it we will get back into it, my wife and i were looking to buy a camper trailer by the end of the year so we will hit the sand and trials heavily after that, so it will come back to me for sure, but at the moment when i get a chance i try to get out fishin, i am only a 25min boat trip on a calm day from moreton island and when the fish are there it is great fun.
so where you born in auatralia? i have realitives that live in the uk i plan on going over there sometime for a visit, never left aussie b4 so it will be good to see that part off the world.

shane.


Teriod if you read this how things mate, hope all is well.

rob
02-02-2009, 10:30 PM
Hello Toby,

It's funny that you mentioned Tamiya. I'm working on two different Tamiya kits right now. One is the new 1/10 scale Toyota Hilux. It has a very realistic ladder frame, oil shocks, low and hi range 3 speed manual transmission, and the coolest part, you can lock the front and rear differentials remotely on the fly. It has an led light package as well. Fun stuff. The other is a 1/16 scale R/C Leopard Tank with full sound package, gun recoil, engine sound, the works.

Tamiya products are pricey, but they are the best, and worth every penny. Anyway, I hope all is well on your side of the pond. I see you have snow. Rather unusual to see that. Talk to you later.

Rob

TobyJug
02-07-2009, 03:31 AM
hey guys...

nope not born in Aussie I am from Holland actually....
But when I went to Australia I felt home...

I love the fishing over there.... I did a lot of fishing in the Kimberly's during the trips..... DINNER.... :lol:
The whole of Europe is not great at the moment mate stay in Aussie... lol

Hey Rob, nice.... I am going to board out the loft soon so that I can have a little place to hide lol my pc's, Ham Radio's and sticker machine are going to be up there and thinking of starting a Land Cruiser and Hilux Tamiya kit then.... :P
Leopard tank ay... nice..

Yeh some snow here but not to much on this side of the country I am in...
We had some but not to much.....

rat
02-17-2009, 04:29 AM
yo I am still around, which is my answer to the original question, having a few problems with lupus, appears that I am building up scar tissue in my abdomen and rapidly losing muscle mass.
Lupus related? no idea.

Can see an end to my working life so have started importing products from china to sell on ebay, looking good apart from a few people I purchased from who think they can bs you but I have found a few reliable suppliers, so when the wheels fall off my working life a have something to fall back on, only takes a couple of hours a week so don't have to sit here for to long.
Will start to check in more often if there are people to speak with on this forum.
cheers to you all.

rat

ssingh
02-19-2009, 03:14 PM
I am new to this forum. I am 39 years old in bayarea california. I was diagnosed 12 years ago with SLE. I been through all drugs so far. Has anyone tried MIRAC?
And reply to rat's post, recently I been losing muscle mask and weird stomach issues.

rob
02-19-2009, 03:41 PM
Hello Ssingh,

I'm Rob, I'm 41 and I live in Maine. I was diagnosed with SLE five years ago. I'm not familiar with MIRAC. I assume it's an acronym for either a condition or treatment? Anyway, make yourself at home, and don't be afraid to jump into the conversation. Most of the talk here happens in the area called "Lauri's Lounge". Welcome to our group.

Rob

ssingh
02-20-2009, 03:51 PM
Hi Rob,
thanks, here is what I am talking about MIRAC
check this site out "lupusremedy"

I like discusss what I have tried so far and what worked best me or for some one else. By the way I have one sister with LUPUS as well.

rob
02-20-2009, 06:08 PM
Ssingh,

I did a little reading about this product called MIRAC. The manufacturer wanted to post ad's for Mirac on the Lupus Foundation of America website. The LFA medical council did a study on the product and denied the request for the ad. The council came to the conclusion that there is absolutely no scientific evidence whatsoever supporting any of the manufacturers claims as to what this product is supposed to do.

Also, the manufacturers website says MIRAC stops, or "attacks" the cause of Lupus. Since nobody knows what causes Lupus, that statement in itself is very misleading, and untrue. This stuff is just the same old snake oil, with a different name and label. I'd steer clear of the stuff.

Rob

ssingh
02-20-2009, 07:33 PM
Rob
I am currently on Prednisone, Cellcept, Plaqunil and few months back I had IV Cytoxan. Luckily So far none of my organ are involved but severe Fatigure, weakness, weight loss, arithritus, Malar Rash few other things... Any advice? I like to discuss Anti double standard DNa test. I always high on that but ESR is arround 2. as you know not many men have lupus, what were or are your symptoms and what medications or such if you like to discuss. I have family history as you do and about the same age. I like to send you PM with more detail if u OK it. I like to find how SLE behaves in MEN. I was told it is worse in MEN as symptom wise.

rob
02-21-2009, 01:53 PM
Hi Ssingh,

If there's anything you want to talk about away from the public boards, you can certainly PM me anytime. I'd like to discuss the technical stuff you mentioned, but right now I can't think clearly or remember very well. Brain fog has me bogged down right now. Hopefully it will lift soon.

Rob

ssingh
02-21-2009, 02:09 PM
thanks, I will PM you. Brain fog sought of weired feeling hard to explain sometimes fear kind of uneasy feeling has been lately been my problem along with fatigue and muscle pain and somejoint and weight loss. I feel just it is not me. My backround is quite technical(engg.) I have the best doctor available in bayaream, Prednisone 7.5, cellcept 2000, plaqunil 400.

Grime
02-26-2009, 10:27 AM
Hi,
I am a 64 year old male, living in Port O'Connor, Texas. I got the report today that I have Lupus. I have more test up and coming with the VA in San Antonio.

Do we have any VNV here on the board? I served from 67/68 down in the delta.

I have found a new love, Sailing. I don't have a big sail boat but she is nice. I sail in Matagorda Bay and had plans on doing a lot of coastal sailing. If I keep covered up and sunscreen on can I still sail.

I don't want to live the rest of my life in a cave.

Take care all,
David

TobyJug
02-27-2009, 01:32 PM
Hi,
I am a 64 year old male, living in Port O'Connor, Texas. I got the report today that I have Lupus. I have more test up and coming with the VA in San Antonio.

Do we have any VNV here on the board? I served from 67/68 down in the delta.

I have found a new love, Sailing. I don't have a big sail boat but she is nice. I sail in Matagorda Bay and had plans on doing a lot of coastal sailing. If I keep covered up and sunscreen on can I still sail.

I don't want to live the rest of my life in a cave.

Take care all,
David

Hey Dave,
first of all welcome to the forum mate...
I love sailing not been on a boat for a while but I love it...
I am sure u will be fine with sunscreen and a hat...

just enjoy it deffo don't go hiding in a cave.... :P
anyway mate nice to see another male added to the group, don't be a stranger now that u have found us.....

Grime
02-27-2009, 01:42 PM
Thanks for the welcome, Giving up sailing is not going to be a option.

TobyJug
03-01-2009, 05:11 AM
yeh I know where u coming from...
I do a lot of off-roading and never giving that up either...
I always suffer after a day but well worth it.... :D

ssingh
03-13-2009, 12:52 PM
anyone tried Whey power protein for muscle weakness or for weight loss?

richie
05-13-2009, 05:39 PM
hi im richie am 47 had lupus since I was 17.I am from florida

rob
05-13-2009, 06:15 PM
Hey Richie,

I'm Rob, and I was diagnosed with SLE five years ago. I'm 41 now. I live at the opposite end of the east coast up here in Maine. We have a small, but dedicated group of men here who post here on a regular basis. Welcome to our group!

Rob

bte
07-03-2009, 08:06 AM
yes, i am out here

bte
07-03-2009, 09:00 AM
i am 52, live in nc. along with lupus, i've got sclederma,raynauds(amputation of rt. index finger-last digit). also, have diabetes, diabetic neurtrophy. and am on 4 liters oxygen. at nighi to combat my sleep apeana, i wear a bipap,using 8 liters. on 7/1 my wife and were rear ended on the interstate. her dr, diagonsed her with whiplash. i go on 7/6 to the dr. since i take several pain medications, i don't know what to say to the dr. any suggestions?

kbwitme
07-22-2009, 12:06 PM
Hey everyone new to this website. It's great to see others who are going through the same thing as me. Well I mean it's not great, but it's nice to see others who understand. My name is Kyle I am 31, I live in Oklahoma City, I was diagnosed with Lupus almost 4 years ago. I have 7 of the 11 symptoms that go along with Lupus. I have my good days and bad days, but depression is my main issue that I deal with.

Grime
07-22-2009, 12:25 PM
Hi Kyle,
Glad you found this site. The members here have helped me a lot more that my doctors have.

A long time ago I got real depressed to the point of no return. I turned to my maker for help. On January 8th 1980 my depression left me for good. Now I just get mad and change the things I can and forget the things I can't change. I can't change the fact that something is wrong but I can surely live the best life I can and enjoy the good days and tell the bad day to go somewhere else. They are not welcome here.

Find something that give you enjoyment and go for it. I have a sailboat that gives me the enjoyment.

jfal
08-01-2009, 07:49 AM
After reading thorough the whole thread...well, not really, I have come to the conclusion...Geez, this forum needs a Shoutbox.

I'm John, 43 male living in Guadalajara Mexico. Diagnosed recently with APS secondary to Lupus.

Joint pains, Brain fogs, dizzy spells and worst of all, "Pins and Needles".

I am the national sales manager in a company that sells hydraulic, electric and mechanical parts and systems. Which means that I sit at a desk using a computer all day.

Edit: Too bad I'm married. A lupus forum is a great place to meet women... ;)

Troy Blair
07-07-2010, 09:41 PM
Troy 39 Edmond,Ok dxd 2yrs ago SLE,RA And AS

jmail
07-08-2010, 01:49 PM
Troy, what medz are you on? Ever hear of infliximab (http://en.wikipedia.org/wiki/Infliximab)? I was just reading that article the other day. A fellow I work with gets it for his Crohn's...

Troy Blair
07-24-2010, 12:24 PM
Troy, 39 OKC,OK SLE, RA, AS

eastman
09-03-2010, 05:10 PM
Hi my names chris and just got diagnosed with sle lupus, but im thinking that I have been dealing with it for a long time and I tell you its good to hear from some more guys cause I can't find any around me. Im 27 living in boring Oregon with my wife and my one and half year old daughter

hating_that_pred
09-22-2010, 11:24 PM
Im 19 years old from Australia with SLE (lupus nephritis). Recently had my third kidney biopsy in 1 year which showed I am experiencing a relapse. Have tried Cellcept, Prednisone, neoral (cyclosporin), however I never seem to remain in control with flares occuring way to often. So im currently recieving an IV infusion of Rituximab over 2 weeks. Two 800mg shots spread over 2 weeks.

wadenvk
01-17-2011, 07:43 PM
Just wanted to say hi to every one here. My name is wade, I have been diagnosed(Lupus SLE) for 8 years, during a flare I have about 8 of the symptoms. I am 40 years old. I work road const, Run a hot mix plant. Some of the things i love to do are fishing snowmobileing and four wheeling. I havent been to my dr. in a few years now everything just got to confuseing for me. I have flares all year long, I have been in one now for two weeks. I dont let it slow me down though not saying its not hard to do. I really dont know anyone that has lupus so nice to be able to read what others go through and compare to myself. well that it for now.
Wade.

scubagramplit
01-26-2011, 06:53 AM
Greetings Wade, sounds like you are doing good being able to continue working. This all started with me about two years ago, I also was determined to keep working however this disease had other ideas. Where do you live? I also love to snowmobile however I think I am going to have to sell my sled. I physically cannot handle it any more but I love it so much that I still try to ride like I was in good shape. A good recipe for disaster. I only went once this year and it about did me in. It was a blast though:~}

wadenvk
01-26-2011, 04:18 PM
Thanks for the greet scubagramplit. I live in northern Minnesota. We ride quite often lot of snow here, I really hate to see the road that lupus can take a person, I am very thankfull that I still work and can do the enjoyable things also, and I know that the time may come that I will not be able to. I have high hopes that it wont get that bad but we will see. Again thanks for the greet and it is nice to meet you.
Wade.

steve.b
03-10-2011, 12:18 AM
hi this is steve.bryce. i am 49 and living in western australia. been diagnosed for 2 years, but suffered for over30.

forty2
05-12-2012, 09:39 PM
42 yo, currently in South Texas, but from Houston. Active Law Enforcement Officer, diagnosed SLE and Sj in 2011. Any other police officers here working through SLE?

EricG
05-15-2012, 05:57 PM
Im 25 out of Minnesota. I love my job but having been thinking that I should possibly change my career as well cause of UV light, I am a welding/fabricator/mechanic im surrounded but UV from welding or having to work on vehicales outside.

forty2
05-20-2012, 01:47 PM
Im 25 out of Minnesota. I love my job but having been thinking that I should possibly change my career as well cause of UV light, I am a welding/fabricator/mechanic im surrounded but UV from welding or having to work on vehicales outside.

I think environmental issues are a huge factor in how long we can remain in the workforce. Interior UV lights, outdoor UV, and communicable diseases (even minor ones like the flu) are of particular concern to me. I moved to another area of my profession before I was diagnosed because I couldn't recover from otherwise minor injuries (which were just part of the job)..

DanTheWolfman.com
09-11-2012, 09:16 PM
been 4 months since last post, any dudes out there?

35, diagnosed SLE and probably Sjorgens almost 3 1/2 yrs ago.
Think I have been different entire life, sick too often, hypochondriac etc since forever and pain, since atleast 16. Would crash bad if I went into super hard MMA training mode for too long, be in bed 7-10 days with "viral infection".

Men get low testosterone often, high estrogen around my age, but my testosterone so bad, think lupus wrecked my hormones. If you haven't, check them. My Estrogen was high, DHEA super low (common in woman with SLE, my theory is that most are post menopausal, woman are low in DHEA anyway, and the extra testosterone this gives (as well as estrogen) when it converts would give them percieved boost is my guess. Super High pregnenolone, top specialist doesn't know why (many men with low test are low, not 3 times normal range like me.....though I did find one source this could be cause inflammation perhaps or combating it)
Anyone TRT HRT out there????

been scared lately, last month the off and on tingling/numbness in my entire left arm/left pec, and a bit to my big toe, my first symptom actually, is going on. Does the tingling getting worse mean anything? common?

Horrible hand pain, have to sleep with hands between pillows hard to fall asleep.

Still try to remain active, MMA/Grappling/Combatives etc, but can't push too hard. I spend my time in bed or online days between training pretty much. Is all I know, hard to live the life I want.

Getting more pour, worse hand pain over time, more tingles.

only on plaquenol, ....tramadol 2 time per day for pain, muscle relaxer at night, lots of suppliments now including DHEA etc.

Any men on TRT or into martial arts heavily, can email me danthewolfman@hotmail.com

Thanks

n.mac
09-12-2012, 02:20 PM
Hello Dan
Lupus sure has a way of slowing us down! I am 51 and still work construction full time. I still do alot of climbing,toteing and packing LOL- but not like I used to.
I work out using a bow-flex-more for flexability than strength training.

I am on plaquenol and cellcept.

I certainly understand about pain and trouble sleeping.Sometimes my arms and legs ache so bad I have trouble falling asleep and staying asleep!

I would caution you to be carefull about supplements-I started taking a mens vitamin (mega-mens) about a year ago-it actually made my arm and leg(not just muscle but bone pain as well) worse!
DHEA is a imuno stimulant-which is the last thing us lupies need. I quit taking it and felt better soon after.

The mayo clinic website has a list of drugs and supplements us lupies should avoid or better yet ask your dr.

Take Care Niall

jmail
09-13-2012, 02:28 PM
I was looking for that list the other day for another post, Niall, and can't find it, but I did find
http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/
which is John Hopkins. I'm almost certain there's one that's longer, and in table format... Maybe it's in the "stickies" here... hmmm

Slightly low B12 does the neuropathy-like symptoms for me, but I can't keep up with it (the B12) anymore, and have to have injections. I can't do MMA, even just "plain" Tae Kwan Do or Kung Fu anymore. Just the "warm-up" does me in anymore. (I now live vicariously through my oldest boy... tic) I had to quit dirt bike racing and even "play" riding back in 1992, and now I'm left with the recumbant bike and simple "core" exercises. But I'm 56, and really shouldn't be doing dirt bikes anyway... I was dangerous to trees, rocks & dirt, even at my best... lol - The "having to slow down", as opposed to "wanting to slow down" is the hard part for me.

mercante
11-28-2012, 05:22 AM
hi,im 48 male in melbourne australia

DonnyJM
05-17-2013, 10:26 AM
Hi there - I'm a newbie bloke aged 43, based in the UK, married with 2 great kids.
I've been suffering with various symptoms over the years and never connected them all until a recent operation showed a couple of additional pointers and was sent for a load of blood tests.
The tests came back thebther day and most I tested positive for ANA (incl screen test showing speckled) and RF. So I have not had the 'official' diagnosis but will be seeing my GP next week who will probably refer me on to a specialist.
I suspect that it will take some time before I get a diagnosis but I have spent my whole life in the shadow of my mothers SLE as she was diagnosed after a PE when giving birth to me and it is a clear autoimmune of some sort.
I love sports and have more and more found it increasingly difficult to fnd the energy to do anything but I keep percevering and definitely have to rest afterwards...

Cheers,

Don

rob
05-18-2013, 06:35 AM
Welcome to WHL Don!

michael1990
08-01-2013, 11:58 PM
I am Michael 41 and I have SLE and Anti clotting lupus. from Texas

benfica01
08-14-2013, 01:22 AM
32 and Lisbon Portugal .. I have Sle, ddd and other back issues as well as mitral valve prolapse.. I am on 12 meds :)

hating_that_pred
12-14-2013, 01:29 AM
I'm 22 from Australia and I have Lupus Nephritis. Had a horror 3 year period but health is going well now.

SFBill
03-11-2014, 12:37 PM
Hi All:

I'm 57 years old with SLE and Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (such luck!). I hail from San Francisco, California.

Bill

Saysusie
03-12-2014, 08:58 AM
Hello and Welcome to all of our male members. I am sorry that this forum is not very active. However, please be assured that if you post anywhere in WHL, we will respond to you as soon as we can and we will provide as much assistance, understanding, comfort, and information that you need.

Again....Welcome!!


Peace and Blessings
Namaste
Saysusie

bestellen
09-25-2014, 04:49 AM
I'm Alex from Eastern Europe.