First off... my name is Robert, and I live in Panorama City,
California. I'm 40 years old now and it has been 6 years since I had
SLE: 3 years of symptoms without knowing what was wrong and 3 years of
living with the realization.

But before I continue, let me tell you this in advance. I tend to
write long. It is so because I want to have my reader picture my
thoughts better. You are free though to cut me short whenever you feel
like it. Only tell me why I should! :P

Anyway, I guess it will take more than a nudge for men to admit they
have this disease. And like what some online articles suggest, 'since
Lupus is more known to afflict women, men would try a lot of things
just to tell themselves "the diagnosis must be a mistake"'. It
certainly takes time to embrace something as serious as this. But
while you're thinking somewhere else and not focusing about this
change in your life, what would you do when the disease finally begin
manifesting its presence?

It's hard to understand it simply, you know. It's a good move to read
a lot about it. Not everyone with Lupus have like-symptoms. But as the
disease progresses in your body, some things that you read from
another are likely to happen with you, one way or another.

I thought I wouldn't experience the so-called "butterfly rash" on my
face, but only 2 weeks back I was cautioned by my primary doctor to
take things easy and avoid prolonged exposures to the sun because I'm
having a mild case of that right now. I've always enjoyed going out in
the sun, as long as I can find big trees to cool myself. What I don't
know is that, even under that shade I am exposing myself to elements
that will affect me later.

I know I have the disease yet, I'm always trying to do normal things
anyway. I guess my idea of "enjoy things now before you can't later"
is often my answer to that. I know a lot of people with Lupus are
often expected to do what their doctors tell them, for their sakes. On
the other hand, I do what I think is a good adventure! Not that I love
playing against fate but, while I can, I would.

I was advised by my doctor to take up biking or swimming, as both can
be beneficial to my well-being. Having osteoporosis due to Prednisone
exposure meant 'no weights or my bones will break'. I have to take
care not getting sprains or other bone/joint-related problems to avoid
being bedridden for life. And I can feel how weak my bones are each
time I do short distance trekking or strutting.

Back in college, I had my time dancing punk-style! Where you can swing
your arms around like a wild top and kick your legs out, hoping no
other dancer gets hurt with your moves. I guess that was when I truly
enjoyed myself. I have always been a lazy lout. No love for sports or
outdoor activities. Except for some biking around the neighborhood, I
guess that's about what keeps me elated.

I tried basketball but learning playing rules made me lose interest.
I'm more into daydreaming all my life. That and reading JRR Tolkien,
Anne McCaffrey, Star Trek and Eric Van Lustbader stuff. I guess it's
no wonder that the first symptoms of arthritic discomforts began with
my hands.

Then the pain travelled through both arms to my shoulders, down my
back to my hips, and spread to my legs and feet. By then I was like a
robot losing its oil. Every movement was painful and my mind couldn't
understand what was happening. I'm not sure though if my inactive
lifestyle helped awaken this disease!

But you know what? It helps to know others are like you. And right
now, I'm having this itchy problem on both lower cheeks (near my
jawline) that always crop up during the hottest part of summer or the
coolest part of winter. I only use what topical ointments my doctors
suggest I try. Most will not work, of course. And if one does work, it
won't the next time you use it.

Having Prednisone in one's system also prevents other medicines with
corticosteroid elements to work on you, topically. Anything can be
related to this Lupus. What you take can also add up to the overall
discomfort you'll be going through your life. Yet there's nothing you
can do about it.

Sometimes, I even skip my many medicines, out of exasperation. But
mind you, I know that's a bad thing I do for myself. Don't do it, if
you can help it. Lupus will never go away, that's a given. It can only
be suppressed but never cured. I hope one day, the science of medicine
will find a safer way to deal with this silent disease. I hope I won't
need a kidney transplant any time in the future. My doctors are doing
their best to rejuvenate my weak pair and tests results suggests that
I'm in my best form at this time. All are within normal limits, save
for the (getting higher) protein present in my urine. A better diet is
the only answer to this.

Weight gain? In the course of 3 years following my treatments, it's
fortunate that I managed to keep back too much unwanted weight. I only
gained an additional 22 pounds in 3 years' time, from my normal gain
of 170. For my 5 foot 7 inches height, I should weigh 145 pounds. But
I went to 170 because of liquid retention (one of Prednisone's side
effects). Add the 22, so now I've got 192 pounds. One of the reasons
of this weight control is due to my cutting off snack time and eating
half of the meals I usually take. And the diet? A little of everything
to best enjoy what is now.

Fried food and any form of milk gives me tummy trouble so I veer off
from such. I still can't do away with sodium though. That's something
you can't tell Pacific Islanders to avoid. It's been a part of our
kitchens all our lives. :) I don't know much about what you guys have
for healthy eating but I do mine the way I want them. I try to
moderate some of my practices to avoid lasting consequences.

I can go on and on about myself but, what about you guys? It would be
quaint to find others like us sharing their thoughts, huh! Feel free
to open up for a change. It truly helps. Don't let your fears get the
better of you, okay!

Take care and try avoiding Potassium-rich food & drinks. Your kidneyys
will suffer if you can't moderate that. :D

~Rob

--- In menwithlupus@yahoogroups.com, "Pam" <xbeepx@...> wrote:
>
> Welcome to this brand-new group. Now that there are two of you,
> hopefully you can introduce yourselves and conversation can begin :)
>
> I'm going to be working hard on getting the word out about this group
> over the next few months, so there should be more of you soon enough.
>
> Hugs,
> Pam
>