Closer To Fine

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Medical setbacks are commonplace for those of us with chronic autoimmune disorders.  I have lupus and my life is often derailed with flare-ups from this disease.  Lupus affects millions of people.  My story is not unique.

The last couple weeks have been hell for me with a recent flare affecting my skin and the small vessels in my legs.   “Mind over matter” doesn’t work for me when it comes to pain.  I feel disfigured, vunerable and isolated.  Friends and family can be thoughtful and supportive when  lupus attacks, but I don’t expect them to really understand.  I’ve screamed and cried until I could hardly breathe.  I totally avoided going outside.  I chased down a truckload of Xanax with a couple bottles of wine.  I researched all the current criteria for SSI disability and was pissed because I actually qualify.  I spent sleepless nights watching inane movies or trying to read a book.  I called in sick from work and sat in bed for 13 hours.  Every time I looked in the mirror I was disgusted with my entire body.  The phone hardly rang, so I was mad about that.  And when a few brave souls did call to talk, I spewed self-indulgent diatribes of hopeless bullshit at them.  Lately, the glass has not been half full or half empty.  I smashed it on the floor into a thousand tiny pieces.  Literally.  Except it was a plate.

This is what lupus does.  It’s ugly and angry and frustrating and sometimes unrelenting.  This is the nasty underbelly of this chronic, incurable, insatiable disease.  It can attack the brain, the heart, the lungs, the kidneys, the skin, and everything in between and nobody knows why.

How are things now?  I’m able to pull my prednisone-bloated body together and go back to work.   I can write about how I feel.  In the movie A Beautiful Mind , John Nash struggles to ignore the delusional people that haunt him throughout his life.   In my recent flare with lupus, I am trying to ignore the voices of despair and anger in my head.  To that end, I’ve been able to spend some quality time with a handful of people I trust.  With them, I don’t feel so ugly or limited.

I continue to look for sanctuary, or inner peace, or spiritual guidance, or comfort, or whatever you would call it.  Maybe there isn’t a word for what I’m seeking when I feel bad.  I really don’t know.   Somehow, I feel a little better.  Just a little.  People often describe their life journey as a landscape of hills and valleys on a map.  Lupus appears in my mind’s eye as a series of crooked roads going nowhere.  Either way, I’ve had enough of the screaming and angst and sleepless nights.  I don’t want to look at the map right now; the hills and valleys and roads are just too much to deal with.  For  now, I want quiet time without tears and heartache.

There’s a song by Indigo Girls that I like a lot.  Aptly, it’s entitled Closer To Fine. It speaks to how I currently view the battle between my spirit and my disease.

I’m trying to tell you something about  my life

Maybe give me insight between black and white

And the best thing you’ve ever done for me

Is to help me take my life less seriously

It’s only life after all …..

Well darkness has a hunger that’s insatiable

And lightness has a call that’s hard to hear

I wrap my fear around me like a blanket

I sailed my ship of safety till I sank it

I’m crawling on your shores …..

I went to the doctor, I went to the mountains

I looked to the children, I drank from the fountains

There’s more than one answer to these questions

Pointing me in a crooked line

And the less I seek my source for some definitive

The closer I am to fine …..

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8 responses »

  1. All this just makes me want to scream FOR you so you don’t have to add sore throat to the rotten list of things that Lupus does to you. I can’t understand all that you are going through but I do understand the part about how it makes you feel ugly and even how it can make you think ugly things and behave in ugly ways. But that is not YOU, that is how the disease affects you. Do you belong to any Lupus support groups? My sister does and it seems like those would be the most likely places to find the most up to date information and news. I wish I could do more for you. But the least I can do is stand here and keep handing you as many plates to smash as you need. (Plate smashing is also one of the destructive things that I find very satisfying when I’m at my wit’s end – the sounds of the dish breaking is very cathartic – glad I’m not alone).

  2. For what it’s worth, I will tell you that the image you see is not the one I do. And I’m not talking about “looking through the eyes of friendship…” although that’s true. I’m saying you look nice and healthy even while lupus does its thing, and your hair looks nice too oh by the way.

    Sometimes, a good hair day is enough 🙂 And I’m not increasing the dose of the stupid drug that made it fall out in the first place!

  3. I totally understand your feeling ugly and such. I really do. There have been times in my life….

    Teeni is right in that you should find a support group and join it (if you haven’t already). If anything, it is comforting to talk and listen to people going through the same things. Keep smashing plates… get yourself a baseball bat and beat things. Whatever works to vent your anger is good. And as always, there are many of us who are here to lend you an ear any time you need it.

    Simply allowing myself to vent is a big step forward for me. Support groups help, too; I haven’t found the right fit yet, but I see a therapist and that helps. Sometimes nothing works when times get tough … except for plates! I’m trying to move on. Maybe take up the drums? 🙂

  4. Well I can certainly relate to how you’re feeling, i’ve been feeling dark and angry myself lately…but PLEASE don’t chase down xanax with wine!!! You’re too smart for that!!! Anyway, there is a lot of support online- have you checked out http://www.butyoudontlooksick.com?
    God bless you my dear, God bless us all…there has to be a reason, I keep looking for reasons, and I find them, because otherwise I would go mad…

    Yeah, the drugs and wine option wasn’t one of my finest moments. Trust me when I say that particular tantrum won’t be repeated anytime soon. I appreciate your concern and yes, I’m a fan of The Spoon Theory, as well as the site! Bless you, too. There is a reason … and I have faith to keep searching.

  5. Throwing it all out and having a rant is one of the best medicines, chased with wine never good but sometimes we just got to rebel… I have never gone through what you and Psych and others go through each single day of your lives but on some levels I can relate and when I do I know that your pain is a gazillion times worse both spiritually and physically.

    I know no words will make your load lighter, all I can offer are hugs, big huge ones. Hang in there, you are one incredible human being. I was once told that only the awesome incredible special amazingly beautiful humans are put through such harsh trials, that people who have it easy don’t know true life at all nor do they know the truth of love, real life, real love.

    Hopes you are doing better today and that wine was at least south african! tsk

    I’ll take the hugs 🙂 Thanks for caring!

  6. Beating a drum – what a great idea!! So…..I think you should join a drum circle!!!!!!!!!!!!!! Or a support group, whatever.

    I don’t have Lupus but, I have alot to “bang” about too – I love someone who is living with Lupus….and I am powerless as well.

    Maybe we can beat the drums together my dear sister!

    xxoo

  7. You know, drumming isn’t a bad idea at all. You’d be surprised at what you work out and through playing the drums. For me, it’s like opening the flood gates, so you might want to seriously consider it.

  8. Hey Susie, Judy is right.

    “I don’t have Lupus but, I have alot to “bang” about too – I love someone who is living with Lupus….and I am powerless as well.”

    Remember, your little brother is here for you the next time you want to rant, or scream, or smash stuff or just let it all go!! (Or want another shoulder to lean on….)

    xoxo

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