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I started my symptoms early, in the late 80's. No one caught it. Eventually I got diagnosed in the 90's. It took 7 years to convince the VA I had lupus despite the lab work, letters from various physicians and pictures of my joints at twice their normal size. Being male didn't help. Being happily married did. It kept me from hitting some doctors who thought they were too smart to bother reading a recent study on lupus, or looking at the current statistics as opposed to the stats they had read in the seventies.

As to being male with lupus, here are a few things I've learned:

Testosterone isn't really used as a therapy for women with lupus, but it's worked wonders for me. I read somewhere it's generally very low in women with lupus, so I had my doc check my levels. Too low. Got a patch and felt like myself again. I don't really care if my beard gets thicker or I gain some extra muscle. The usual problems with T don't hold for me; levels are only being brought up to normal, so it's not a hazard.

I hate being weak. The last hospitalization left me unable to feed myself. You'll probably never get that bad, so no worries. But if you work out, if you exercise, it's not half as bad. Exercise is torture for me. Being too weak and feeble to hold my wife is worse. So I exercise.

Take enough meds and you'll wonder why you ever thought sex was interesting. ALWAYS tell your doc if you see changes in your libido as soon as you notice anything. This is so low on their priority list they generally don't address it till it's a problem. If you say it's a problem often enough, they'll find meds that help and don't make you feel emasculated. I like being a guy, I'm sure you do to, so don't miss out on the best parts.

I've struggled with this disease for over 20 years now. If I've learned one thing, it's to fight like there's no tomorrow, to never give up. Some choose to endure, I've chosen to fight. And I've had a damned good life despite several terminal diagnoses. Don't let this slow you down. Get a good doctor, stay on good meds, and make sure he knows you want a full, rich, and exciting life, and you won't settle for less. Quality of life doesn't require a cure, it just requires making the most of what you've got, making the life you can enjoy in your circumstances.

I've been very sick. I'm very sick now. The meds I take make me miserable, and it's even worse if I don't take them. But everyone around me knows my mantra. They remind me when things are getting out of control. "Take it day by day. If you can't take it day by day, take it hour by hour. If that won't work, take it minute by minute. Always focus on winning. The disease may win the war, but I can win a lot of battles before it does."

More power to all of you.
 

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Hi,

I'm not a man :lol: but I like your post!

I'm sure it'll be a good inspiration to some of our men here.

Katharine
 

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Hi there and welcome here.

Quality of life doesn't require a cure, it just requires making the most of what you've got, making the life you can enjoy in your circumstances.
So true. Thanks for the reminder. I needed to read that first thing this morning.

You seem to have a positive attitude and I am sure that alone has brought you this far.

You are right, despite us fighting our meds, if it gives us more quality of life, then so be it.

Nice to meet you.
 

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Nice post Erskine. As a fellow male I know the feeling. Took YEARS to get a diagnosis. Doc treated me like a hypchondriac for most of that time. I didn't get the Lupus news till Nephritis kicked in. I was diagnosed (had never even heard of Lupus) and started chemo nearly imeadiately afterwards. All kind of seems like a blurr now. Since then I've learned to live with this thing, it's a way of life. I got good days and bad......enjoy the good ones......and be lazy on the bad ones!
 

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What a wonderful post and it's great to meet you.

I love the part about winning many battles! What a great attitude to take on.

Take care...
 

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hi Erskine, remember me on chat room last night. i am very happy to meet you we had a good conversation about our animals and so on.

i loved your post as well very good advise especially for someone that gets dxd and they think their life is over. ive had lupus for the past 19 years with luckily no major problems. my symptoms started only a few months ago

and it scared me so much i went into a deep depression but now i feel alot better. I thought i wasnt gonna get better.

with the help of my family and alot of people on this site i feel alot better then before even though i have crying spells from time to time out of nowhere.

i wake up every morning thinking about lupus and go to sleep the same way
i dont want to do this, but this unpredictable disease makes me think this way, but then again life is unpredictable so who am i kidding. thank you very much for your post and stay positive thats what we all need. take care Erskine.:) :) :)
 

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Discussion Starter #10
Thanks

I read all of those replies and then felt guilty for not going to work out. So I dragged myself to the gym. Gotta stay strong.
 

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Glad this was bumped up because I really needed to read something like this right now...... I'm a male who is at an all time low .
Just thanks for now....
 

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Hi Erksine
Wow is what i was thinking when i read your post.I am so sorry you have been through h--l with your lupus but sure glad you have such a wonderful attitude about the lupus at the same time(((hugs))).I cannot imagine what it would be like to be trying to get a diagnosis of something like this the lupus.I do find myself having a fight of lately myself with this silly disease :mad: .I am a woman of course as you probably figured out lol but one that was pretty strong for a girl :p and used to work as a janitor full time before the lupus got to bad and could not physically do it anymore and i do struggle with that every day not able to help my hubby out with finances but i do not let it stop me to much when it comes to getting out and doing things and helping others if i can.I am so glad to read something like your post as it does help me to keep going.Thank you so much for such a wonderful post really and inspiring also.

Tammy:) :)
 

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Erskine, fighting ignorant doctors is the worst thing that is. I am still fighting with some of them actuallu laughing at me because I also have a "women's" disease, Sjogrens.
I think I might have some more aswell because of all my pains everyday, but I guess it will take many years until they figure it all out.

Some times I get so angry I just want to wait in the parking lot with a baseball bat after office hours... ;)
 

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Hi and you have an interesting look on things from a guy side of it. I came in here to see if males have similar problems to females. You are right about taking things as you can rather that be day by day or minute by minute. All anyone can ask is that you do your best with what you have. I figure that it is harder the fatigue for men I mean than for women as most see men at stronge providers. I wish there was something I could say that would help you to feel better. I hope you will join us in the chat room sometime and share with us women the man side of the disease. I am sure we will find that we are more alike than most think lol.
 

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Hi Erskine,

Great Post! I'm a newly diagnosed (Feb 08') Lupie Guy and I too fought with Dr.'s who thought I was just wanting some pain meds and went without a diagnosis for about 6-7 yrs. Being 29 with Lupus it's scary reading some of the stories of some of the "older" diagnosed patients. I don't want to worry about what will happen later down the road, but sometimes you can't help it.
I appreciate your positive attitude. I posted the other day stating I have decided to take control and stay positive, and I got a lot of feeback about the positive attitude mostly good, but some seemed a little aggravated that I was able to keep positive. My Dr. (who is great!) swears that your attitude toward your sickness is more than 1/2 the battle. I too have some really bad days, I actually found this site while laying on the couch last week with a flare up......swollen knees, ankles, hands, lingering fever, etc.

Anyhow, I hate to see you struggle as do some of the others who dealt with misdiagnosis for much longer than I, but keep positive. And you are right....... live life each day like it's you last and things go really good. Even the bad days don't seem too bad, with a good attitude. Me and my wife are expecting our first child next month so I have determined my sickness is going to take the back burner and my main focus is going to be our new son! :)

Keep being positive and thanks for the encouragement! It helps me realize that even though this disease may get worse, I can still stay just as positive as I am now!
GaLupie Dan
 

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Hi Folks

I just wanted to point out (in case anyone missed it) that this post dates back to November 2007. :)

Cheers
Joan
 

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Discussion Starter #17
Just checking in...

Hi all,

I haven't had a lot of time to post here lately. I've been feeling much better, so I've been spending time catching up on all the stuff I let fall apart so I could focus on my health. If anyone has any questions or comments for me, I'll be glad to respond here or via a private chat. I'll post an update on UVA1 in that thread.
 
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