Wonderful people wander into our lives. Some stay for years and some only for seconds. Each day you experience a multitude of moments that make their imprint on your life. Like a flitting dragonfly, skimming so close to the water, we traverse through our routines each day. We pay no notice to the beauty of chance instants…the instants that make us exhale, make us smile, give us joy for a brief twinkling.

Today I begin to share my moments with you. Today I promise to savor my moments.

Monday, August 29, 2011

What Is Lupus and Who Wants to Know...Really Wants to know

I have had Lupus for 7 years now, diagnosed for 7 years, that is.  Compared to other people with Lupus that I now know through my support group, it's been a breeze for me and so I shouldn't complain, huh?

Lupus is an autoimmune disease whereby your immune system attacks your healthy cells with no differentiation from the unhealthy, bad ones.  Besides the serious damage that it can do to your body's organs, it leaves you suceptible to every virus and bacteria running around in the real world. 

You know, so many people have asked me about Lupus and what it is.  I give the explanation that I just gave here.  Do you know how many, after I answer, have then said, "Oh, you don't look sick..." I love that someone once commented to that, "Thanks, and you don't look insensitive, hmmm, guess looks can be deceiving."

The reality is that people with Lupus often do not "look" sick.  They only look sick when they have strokes, congestive heart failure, pleurisy, kidney failure, liver disease, horribly painful rashes, seizures, etc.  Other than that we "Lupians" look just fine...almost normal, very tired normal people, usually. 

Since I posted a couple days ago my angry post of learning my Lupus is starting to "show out" again, I have received emails, comments, questions and remarks from so many people. Over the weekend I have thought about the fact that I mention my Lupus to friends and family from time to time, but I never just BE in it.  I think I have felt that if I talk about it, the Lupus will hear and wake up and grow. 

For seven years I have ignored talking about it, except this last 8 months in my support group.  Even then, I have not discussed it with anyone else on a regular basis except my doctors.  My mom doesn't really know what to say other than oh my and I'm sorry.  My son tunes out as it's something he just doesn't want to think about or deal with because he doesn't want to think of me sick or not around in the future; I get that. My husband never accepted that anything was wrong with me that I can't just snap out of if I put my mind to it.  Again, I didn't "look sick" until I had flares.

I have looked at having Lupus as being a weakness I should hide. I have recently dealt with an eating disorder and through doing that I have seen how secretive people can be about their eating illnesses.  I have used that same behavior with my Lupus.  I've only admitted to it when I have had to due to the down time flares have caused.  I don't talk about running down to the point of sleeping 16 hours, or being so tired I can't pick up my dinner plate and carry it to the sink.  I don't mention that I'm only good for about an hour of shopping and then I get a fever and have to rest.

I have to admit that this online journal has helped. I have always been a visual person and prefer to organize my thoughts in black and white.  Once it's on paper, the thoughts are out of my head and officially dealt with; I don't have to replay them.  So, when I journaled about my Lupus recently, I released the specific anger I had that day and I was also responded to for the first time in a positive manner, an inquisitive manner, an appreciative manner.  It was a new experience.  As I've thought about that I've decided it is time that I embrace my disease of Lupus and not hide it while trying to hide from it.  I think I'm now mad enough and determined enough to face it head on and, that fact, I am ready to shout from the hilltops!

Today I go for my hepatitis screening.  Thursday is the ultrasound on my liver.  Then comes the specialist.  And I am ok.  I am not freaking out.  I am not a sobbing mess of Why Me?  I am the gal who gets up and goes to work and oh, btw, has to stop by and do this or that for her health. Yep, not for the Lupus, but for my health.

I have heard Lupus referred to as a life-dimenishing disease. I am NOT good with that!  I mentioned at the beginning that compared to other people with Lupus my experience has been a breeze and I shouldn't complain in that respect.  I have complained, let me tell you.  However, I'm through with complaining.  Seriously, I'm bumping it up a notch and getting flat out mad that something is trying to run my life and shorten my life...mad enough so that if the Lupus does hear me, IT will be too scared to show up!

Peace and Health, People!

People you've heard of, but didn't realize they have/had Lupus:
Toni Braxton
Ferdinand Marcos
Flannery O'Conner
Jasmine Guy
Trick Daddy
Terri Seymour
Snoop Dog's daughter Corey Broadus
Lady Gaga (borderline tests)
Louisa May Alcott
Tim Raines
Michael Jackson
Charles Kuralt

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