Hey Guys

[Tom]

Hello Gents, style_emoticons/<#EMO_DIR#>/wavey.gif

I was wondering how you are all doing. I was also thinking about maybe getting together once a month or so in chat. It would be nice to keep in touch and discuss anything you like (Health, family, toys, projects, etc.) Kind of a mens night out. style_emoticons/<#EMO_DIR#>/bigsmile.gif

Let me know if you are interested and I will set it up. style_emoticons/<#EMO_DIR#>/thumbs-up.gif

[Tom]

Thanks Teri, I appriciate your support.

[lauralee77]

Tom,
What is DLE? Is that discoid lupus? Just curious..

[Flyingdutchman]

I just joined in to this message board. Glad to talk to other people that Lupus
style_emoticons/<#EMO_DIR#>/wacko.gif

It is nice to be able to talk to other men that have Lupus.

[Tom]

<span style="font-size:11pt;line-height:100%">Welcome flyingdutchman, style_emoticons/<#EMO_DIR#>/shakehands.gif

<div class='quotetop'>QUOTE(Flyingdutchman @ Apr 27 2006, 04:32 PM) Quoted post</div><div class='quotemain'>
It is nice to be able to talk to other men that have Lupus.
[/quote]

I agree! style_emoticons/<#EMO_DIR#>/highfive.gif

Feel free to PM or Email me anytime. You can also find me in the chat room most nights.[/b] </span>

[butterwolf]

<div class='quotetop'>QUOTE(Tom @ Mar 27 2006, 05:26 PM) Quoted post</div><div class='quotemain'>
Hello Gents, style_emoticons/<#EMO_DIR#>/wavey.gif

I was wondering how you are all doing.
[/b][/quote]

Ive been doing well Tom, thank you for asking. I havent been on lately but expect to get on more often again. I think that having a "mens night out" is a great idea. Hopefully there wil be more men responding. I will see you in chat soon. style_emoticons/<#EMO_DIR#>/biggrin.gif
Mark

[Douglas]

Never done the chat thing but since it cannot be "immoral illegal or fattening" I am willling to try it.

[Tom]

Great, style_emoticons/<#EMO_DIR#>/highfive.gif

Now we just have to find a mutual time and date that works for all of us. Sound easy?

I am in the US, Pacific time zone. Moving toward the East coast changes to +3 hours
UK time is +8 hours for me
Austrailia is +15 to +17 depending on where in the country

I like to use this site for many reasons: http://wwp.greenwichmeantime.com/

If you like, you can click on my name and send me a PM to tell me where you are and what times work for you.

Hope to chat with you soon. style_emoticons/<#EMO_DIR#>/thumbs-up.gif

[butterwolf]

Tom, I am in the US central time zone. any evening works for me

[SoCalEric]

Hey Tom!

How am I doing?....CRAPPY!
I've been a member here for quite awhile but not really a poster. But my recent retrun of Nephritis (had it 12 years ago.....it's BAAAACK) has me lurking around again, looking for info, support, someone to complain to.
Can't say I'm much of a chatter, I barely ever get on the computer at home (still on dial up...slowww), but thought I'd say hi!


Eric

[Tom]

<div class='quotetop'>QUOTE</div><div class='quotemain'>Hey Tom!

How am I doing?....CRAPPY!
I've been a member here for quite awhile but not really a poster. But my recent retrun of Nephritis (had it 12 years ago.....it's BAAAACK) has me lurking around again, looking for info, support, someone to complain to.
Can't say I'm much of a chatter, I barely ever get on the computer at home (still on dial up...slowww), but thought I'd say hi![/b][/quote]

Hi Eric,

I'm sorry your having trouble with nephritus. My kidneys have had high numbers before, but I've been lucky so far it hasn't progressed. Just keeping an eye on them. Pain, fatigue, and brain fog seem to be my everyday battles. It's still better than the 12 years of heart problems I had before finally getting diagnosed with Lupus/APS.

Chat is not for everyone. That's why we have this forum, to ask, learn and get support from. It's nice to talk to people who understand, and there is usually someone else who has been through the same thing to get advice from. So feel free to post any questions, respond, or even complain. style_emoticons/<#EMO_DIR#>/tongue.gif
It's all about trying to help each other get through our struggles. Take care style_emoticons/<#EMO_DIR#>/thumbs-up.gif

[SoCalEric]

Thanks Tom!

The first time I went through this I was pretty alone, no computer and knew very little about Lupus (actually NOTHING!). I had the usual few years of unexplained troubles, treated one by one (doc said I was going through a "bad phase" and looked at me like I was a hypochopndriac). I was actually quite relieved when I was diagnosed with something (yay, something really IS wrong with me!) but had to call up my Mom with the medical dictionary to find out what Lupus was (doc had left a message on my answering machine). I did go to one local support group meeting, but felt kinda outta place in a room full of women. So I kinda went through my first chemo treatments without any real knowlege as to what to expect. It's great that today you can find these communities online and get so much info, really would've made my first experience with this easier.
Anyway I'll be around here now and then with a question or two I'm sure, but I've been through it before so I kinda know what to expect.

Eric

[Tom]

Eric,

I really know how you felt. A true feeling of hope finding out you had something treatable. Something with a name to explain everything we have gone through.

My heart problems we blamed on other things (Weight and smoking) but everyone said I was too young for these problems. I finally saw a doctor (By chance) that figured it out right away. He told me "I think you may have Lupus". I responded with "What's that?" I was so excited when he told me it was treatable! And later, a flood of emotions from relief to anger and back again.

Finding this site was just as important for me, it saved my sanity. I spent most of my life trying to fit into a normal world knowing something wasn't right. The people I've met here speak my language and understand completely. Nothing compares to finding where you belong.

Take care and see you around. style_emoticons/<#EMO_DIR#>/highfive.gif

[iris.phillips1]

style_emoticons/<#EMO_DIR#>/wavey.gif hi tom genette here,

hope you are well? i think its a good idea that you men should be able to vent with out all us ladys.
cause we all have ladys night in the chat room.
but dont forget that is good talking to a woman sometimes well i hope all you gents are well take care hope to speak soon love genette
style_emoticons/<#EMO_DIR#>/highfive.gif

[Douglas]

It's almost worth being sick just ot have found this website! That is great fun, and now in my favourites.
On Mountain (Daylight) Time so ...... Being retired, most anytime is good. Except I have a life that is a bit busy and... You know how it is. Set a time and we'll see. Hope you are feeling human.

[iris.phillips1]

style_emoticons/<#EMO_DIR#>/wavey.gif hay guys havent hurd of you for a while so i just thought id say hi for when you all next pop into the forum next and i hope you men are doing well style_emoticons/<#EMO_DIR#>/rotfl.gif
take care all love genette style_emoticons/<#EMO_DIR#>/goodvibes.gif

[Tom]

Hi genette, style_emoticons/<#EMO_DIR#>/wavey.gif

Doing ok here, getting ready for a well deserved vacation. See ya when I get back! style_emoticons/<#EMO_DIR#>/bigsmile.gif

[Angel_Baby]

Have fun at Disneyland Tom!!!! Yippee!!!!!
style_emoticons/<#EMO_DIR#>/hyper.gif style_emoticons/<#EMO_DIR#>/woohoo.gif style_emoticons/<#EMO_DIR#>/woohoo.gif style_emoticons/<#EMO_DIR#>/hyper.gif

[Jen79]

Tom you have a great idea men's nite on the chat. Can I come in and chat with you all ? style_emoticons/<#EMO_DIR#>/tongue.gif
Tom I am sure you are sick of all women every nite lol.

[Tom]

Thanks Angel! I will try just for you. style_emoticons/<#EMO_DIR#>/wink.gif

Jen, I never get sick of talking to all the women here. Heck, you know more than I do! style_emoticons/<#EMO_DIR#>/doh.gif Oh well, if everyone was the same it would be really boring! As far as joining a mens chat time, I guess you're mostly stuck with me for now. I hope you all don't get sick of me every night. style_emoticons/<#EMO_DIR#>/aww.gif

Douglas, I am mostly in chat at night right now. Somewhere around 8 Pacific time and you are welcome to join in. When enough guys come around, we will concider a special time if there is enough interest. I agree with you about finding this site. Not a club I ever expected to be part of, but it's been the best part of having Lupus for me.

You all take care, I'm going to finish packing! style_emoticons/<#EMO_DIR#>/bigsmile.gif

[vincent]

HI to all,
Got diagnosed three weeks ago. I am a teacher, so summer is rest time anyway for me, although I am scared of being too bad to teach in september. The hardest part is to get mentally there, to admit that I have a chronic illness that has changed my life forever, to adjust to that. I am also worried about my two sons, because my wife also has an autoimmune disease, a Hashimoto (thyroid). I wonder what are their chances of getting ill sooner or later. I tried to up my life insurance, but got rejected. Anyone had success with life insurance? What company works better?
I am trying to find out all I can about lupus and how it affect men differently, or not. Most studies I read do show poorer prognosis for men, higher incidence of renal problems and hemolytic anemia. Contrarely to what is said on this site, men do not seem to take longer to be diagnosed, but one study say that men are more often non compliant, that is to say that we would be resisting doctor's advice more than women, or maybe neglect to take the pills. Any truth in that? Do any of us have issues with hormones? Anyone taking DHEA?
Also interested to find out about your experience with fish oil. I take 16 gr a day, which is a lot to swallow, but I do not have a definite take on the optimal dose or how long it takes to help, if at all. My rheumatologist was sceptical about fish oil, but I found several reasons to take it:
1. It is supposed to alleviate symptoms of sle and inflammation
2. Lower LDL and tryglicerides
3. Lower hypertension
4. Lower fibrogen and thrombosis, anticoagulant, does not interact with aspirin or coumadin.
5. Lower vasculitis
And it does not seem to have side effects. But maybe the benefits are so marginal that they are not worth it?

Also I read that you can learn to recognize the signs of a flare? How do you know it is coming your way?
what have triggered flares for you?
well. style_emoticons/<#EMO_DIR#>/thumbs-up.gif
Let me know what you have learned.
Vincent, in Michigan

[Tom]

Welcome Vincent, style_emoticons/<#EMO_DIR#>/shakehands.gif

Lets start with working. I worked until I knew I just couldn't do it anymore and that was a long hard battle with myself. Finally getting dx'd helped me a lot since I had already worked 9 years after bypass surgery caused from Lupus/APS. There is a lot to think about when you look at not being able to work anymore. Income for starters. It will be 2 years since I applied for SSDI and I'm still waiting for a hearing. Take the time to look into your options now so you can prepare if it comes to that. Many people with Lupus can still funtion in the workforce, you just don't know for sure how it will affect you.

I take a multivitamin with my daily meds and I do feel a difference. That's how I judge most of what I take, if it helps or causes problems. If fish oil makes a difference for you, it's worth it. I tried it for a while but didn't like it, made me queezy.

It wouldn't hurt to check your hormone levels next time you have blood tests done. Some men with lupus have had very low testosterone levels and needed to go on treatment. I had mine tested and it was normal. It was good to know for sure.

Signs of a flare I think is a little different for everyone. It comes with learning how your own body acts and reacts to things (Sun, foods, meds, allergies, etc.). Learning what you need to do to prevent them is important, you have to find your triggers.

There is lots of info on past postings, just use the search with key words (ie, fish oil).

Good luck & Take care. style_emoticons/<#EMO_DIR#>/thumbs-up.gif

[iris.phillips1]

style_emoticons/<#EMO_DIR#>/wavey.gif hi there vincent,
i would just like to welcome you to the forum,
even though most of us are women on here you are always welcome to chat with us it is always nice to meet new people.
you take care and i hope to speak to you soon

love genette xx style_emoticons/<#EMO_DIR#>/woohoo.gif style_emoticons/<#EMO_DIR#>/goodvibes.gif

[Joandublin]

Bienvenue to the site Vincent! style_emoticons/<#EMO_DIR#>/flowers.gif

Nice to meet you in chat last night. If you have any other questions you can post your own topic on any of the forums. That way it wont get lost amongst other topics. Just go into the particular forum and click new topic at the top right of the page and fire away....

Hope the meds start to kick in soon and you begin to feel better. Enjoy the vacation

Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

<div class='quotetop'>QUOTE(vincent @ Jul 5 2006, 05:08 PM) Quoted post</div><div class='quotemain'>
HI to all,
Got diagnosed three weeks ago. I am a teacher, so summer is rest time anyway for me, although I am scared of being too bad to teach in september. The hardest part is to get mentally there, to admit that I have a chronic illness that has changed my life forever, to adjust to that. I am also worried about my two sons, because my wife also has an autoimmune disease, a Hashimoto (thyroid). I wonder what are their chances of getting ill sooner or later. I tried to up my life insurance, but got rejected. Anyone had success with life insurance? What company works better?
I am trying to find out all I can about lupus and how it affect men differently, or not. Most studies I read do show poorer prognosis for men, higher incidence of renal problems and hemolytic anemia. Contrarely to what is said on this site, men do not seem to take longer to be diagnosed, but one study say that men are more often non compliant, that is to say that we would be resisting doctor's advice more than women, or maybe neglect to take the pills. Any truth in that? Do any of us have issues with hormones? Anyone taking DHEA?
Also interested to find out about your experience with fish oil. I take 16 gr a day, which is a lot to swallow, but I do not have a definite take on the optimal dose or how long it takes to help, if at all. My rheumatologist was sceptical about fish oil, but I found several reasons to take it:
1. It is supposed to alleviate symptoms of sle and inflammation
2. Lower LDL and tryglicerides
3. Lower hypertension
4. Lower fibrogen and thrombosis, anticoagulant, does not interact with aspirin or coumadin.
5. Lower vasculitis
And it does not seem to have side effects. But maybe the benefits are so marginal that they are not worth it?

Also I read that you can learn to recognize the signs of a flare? How do you know it is coming your way?
what have triggered flares for you?
well. style_emoticons/<#EMO_DIR#>/thumbs-up.gif
Let me know what you have learned.
Vincent, in Michigan
[/b][/quote]

[iandelta]

Hi Tom my names ian 48 from uk i have sle great idea;) let me know and i will b there

[iris.phillips1]

:grhug: hay guys,
just thought i check in and say hi and hope you all are well,
and not to painfull in this heat,
well guys take care

love genette xx:flowery: :flower2:

[Angel_Baby]

Hiya Tom, wanted to drop by and say... HI!
haven't seen you for awhile, guess I keep missing you in the chat room. Hope everything is going ok for ya.
(((hugs)))

[BEEBEE]

Tom
I guess we will have a women's night out style_emoticons/<#EMO_DIR#>/tongue.gif
hello tom and teri even tho i havent met teri yet. tom if u remember me im beebee the walking pill. or thats what my mom thinks of me anyway. its hard cooping wit lupus at the age of 18. when i 1st found out that i had it i was turning 17. my ankles had a red spotted rash that started to swell and be4 u know it i was having seizure after seizure. 17 seizures in 2 days, a stroke on the left side of my brain,heart failure and murmur,kidney failure.im on 30 pills a day and i take aranesp shot once a week because im anemic. thx 4 listening. -beebee :hehe: