Confessions of a Lupus Rebel

I was reminded the other day that there is a significant element of my life that I avoid talking about with most people.  I disdain it so much that,  like most normal folks in denial, feign it’s existence on a daily basis and simply behave as if it is not there at all.

The trouble is it is there, and it has a way of reminding me of that in a rather abrupt and unpleasant way. In fact, it seems the more I try to deny it, the more it pokes it’s nasty finger at me as if to say, “hey, who are you fooling?”

Even writing the truth of this is unsettling and frustrating at a most basic level.  As difficult as it is to admit, as much as I’ve tried to fight it over the past few years, there it remains.  I have Lupus.

SLE to be exact (code for never-going-away) Ever since the doctors told me this I have rebelled and resisted, doing whatever I could do to try and fight it on my own, determined that I would have the last word in it’s demise.

It is, unfortunately, still with me.

It’s painful to say that. It feels like somehow I’ve lost. Maybe I have, I’m not sure.

I’ve always been of the mindset that I would not allow this (or any other illness) to affect my life, that somehow I would be the healthy and active person I’ve always considered myself to be and no matter what I was told, I was in control of what happened to my body.  I didn’t want to be viewed as ‘sick’, cringing at the doctor’s use of that word whenever he reminded me that it was something I had to accept.

If you know me at all, you know when someone tells me I have to do something, I most often do the exact opposite.

I’ve never accepted it, not really. Just merely shrugged it off as one of those mistakes someone else made, not anything I’d ever really have to deal with. Besides, it could be way worse, and maybe if I pretend it isn’t there it will just go away.

It didn’t.

Until now I haven’t been really been willing to write about, because somehow when you write about something it becomes more real, if you know what I mean.

I can no longer ignore the fact that it’s impact upon me is beyond my control at this point, warranting my attention and acknowledgment, lest I fall into full and utter disengagement with reality.  I’ve always believed that difficulty is most often much more bearable once we decide to face it’s existence, I so suppose that is what this is.

If you’ve been following me for a while, you might remember that roughly two years ago I wrote about my experience with a 5 week series of infusions I had to get after finding out my iron was not only depleted after months of iron supplements, but nearly non-existent.  https://fairydustales.wordpress.com/2013/01/24/the-infusion-chronicles/

That is about the time I was told I had Lupus, and approximately the beginning of my rebellion against it.   Since that time (and before) I have experienced a number of what I would classify as purely ‘obnoxious inconveniences’, nothing more.  Exhaustion, lack of appetite, annoying body rashes/itching, lung collapses, heart issues, frequent infections and night-sweats/fevers on a weekly basis.

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Infusions.

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lung collapse, aka spontaneous pneumothorax
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one random, unsightly rash

   

Like anything in life when you have no other choice, I adapted to and dealt with it as best I knew how, doing what I could to live with it or around it.Eat well, stay active, stay positive, drink lots of water, go off gluten (which I hate, by the way, I miss my bread)  etc etc etc.

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Recently it’s taken a nasty little turn and has decided to also set up camp in my bones. I’ve never had bone pain before, so I’ve never thought much about it.  I never would have imagined how much of an impact it can have.
It’s sort of like smoke in the air, touching and changing everything around it.  I’m not sure exactly what it was about this last development that hit me so hard, but for the first time since this all began, there is something in me that feels like giving up.

I don’t even know what that means, really, it’s just how I feel. I am tired of being trapped in a body that seems so normal in so many ways, and yet is so limited that it has become a constant reminder that I am not in full control of my body. I am tired of pretending I feel ok when my body is giving out, and hiding away so no one has to know what is really happening.

Have I lost the battle?

Perhaps, but probably not in the way I think I have.  All I’ve really lost is the deceptive illusion that I can actually control outside forces that may impact my life, that my body is immune to things that may limit or destroy it.   We tend to do that; create facades for ourselves to make it feel like we hold such power, but the truth is we are never really in control in the first place.

I don’t like that, and yet I know there is something valuable in it’s recognition. I can’t say I understand what most of this means,  or if it means anything.  But it’s part of my story nonetheless, and even the most unpleasant chapters of a story need to be told.

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Hearts buried in cyber-wars

Sometimes Facebook just makes me feel very tired.

It’s not that I don’t want to know how my friends are doing or what they are thinking about these days.   It’s actually those things I enjoy seeing the most.

I think where I begin to tune out is with the barrage of imperious links telling me why-I-must-fight-this or whats so-stupid-about-that or the-only-way-to-be-a-good-mom-is-to-feed-your-children-food-from-your-hyperallegenic-garden, and to-hell-with-anyone-who-takes-medicine-you’re-all-going-to-die.  I thinks the last one I saw had something to do with suggesting that children with measles to all go soak themselves in ice buckets while providing them with the rights to bear arms if over the age of two.

Or something like that.

Don’t get me wrong, I’m all about having passion for what you believe and caring enough about something in life to try and make a difference in it. I just wonder sometimes if social media is the best place for all that.

I don’t know about you, but when I am surrounded by fanatical opinions yelling at me from every inch of my screen​, I am not exactly inclined to join in or become immersed in a hostile cyber-space war.

​All it really makes me want to do shut down my computer, get some fresh air, and pull my hoodie over my head.
​Everyone seems to have an opinionated opinion about something these days, and I can’t help but wonder why.  Do people really care that much about how inflated a couple footballs were or what Renee Zellwegger may or may not have done to her face, or is something else going on?
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I’m inclined to suggest the latter.  When I talk to people in real life and listen to what they actually care about, I’m not hearing all that. Rather, I’m catching a lot of desire and need to be a part of something bigger than themselves, valuable in a way that extends past a lot of random propaganda and ill-structured logic and emotional responses to things that don’t actually matter in the grand scheme of things.

I wonder if social media has become an outlet for an inborn desire in people to live out a cause worth dying for.  I mean, all you have to do is scroll through some of the forum discussions online to find extremist language and explosive emotion being evoked by seemingly small matters.  That is coming from somewhere, and I suspect it’s a little deeper than we sometimes assume. Perhaps I am giving us all too much credit, but at heart I think people are much more than what we’ve settled for.
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I see it when people go to war, or when houses burn down or the innocent are hurt.  People in crisis suddenly see what matters and everything else seems to fade to the backburner.  Once hostile differences and debates are forgotten and we band together towards a common goal because it’s suddenly quite clear where our duties lie.
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I think there exists in humans a natural and valuable desire to be part of something bigger than themselves and fight for something they believe in. I wonder if in our current culture and privileged state  we have lost direction on where to express that.  There is so much we have to be grateful for, and everything we need is just a click away….or so we’ve come to believe.  Most of us aren’t having to fight for our lives or the lives of others on a daily basis, we don’t have a physical or clear manifestation of a cause, so we find one.Or two or three or a hundred.We find something to debate about and fight for because something in us is meant for more than we have.  The trouble is, we think we have everything.
And maybe thats the problem.