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Tuesday, February 28, 2012

Pain Knows no Bounds

Okay,  I know I write about trying to be positive no matter what, but I am really, really overwhelmed right now.    I’ve been holding on so tight, so hard for so long I just don’t know who or what I am anymore.  I don’t feel human half the time, feel useless most of the time and am in pain  all of the time.  I would give anything to have someone, anyone, stay with me for a while, rub my aching legs, make me meals, help with the shopping, the doctor shlepping, rub my sore shoulders and neck, etc.  I do see my healer every two weeks and she does the neck rubbing part, but that’s it.  However, if I let myself feel to much for too long, I’d really make an attempt on my life, so I just shut down.  It is worth it?  I can’t really say, since I know no alternative lifestyle. 
When I was 40 and a friend was taking me home from the hospital after my first spinal surgery, the guy who lived next door saw me and asked what was wrong.  I told him about my NF and it’s challenges.  Briefly, trust me.  He looked at me a long moment and said “Shit, I’d have just killed myself a long time ago”  I burst out laughing and said "Then it's a good thing you aren't me"  Because at the time,the idea of suicide was completely alien to me .  But that was before my brother in law took his life and I saw the shattered pieces of our family strewn from New Mexico to Minnesota, to Washington and back again.  I heard the anguished cries of the family, the stricken looks, and the comments from the ones who were not surprised.  None of us were surprised, really.  Just shocked.  It's shocking, even if it's expected. .  Still,  If I had seen my own future, I may have agreed with the neighbor.
My pain is through the effing roof; the tingling keeps moving up further and further….starts at my feet moves up both legs and is now nearing my waist.  No wonder I have digestive issues; I have lost the ability to go.  The pain, the numbness and the disappearing of feeling…it’s like I’m a tree with all it’s leaves falling down.  I’ve had all these dental issues and now I just found out I have another close to two grand problem.  I need another root canal (8 and counting) and I still haven’t done the 3rd crown that was the first round of dental problems.  I can hardly chew anymore….my jaw hasn’t gotten better either.
This is not a challenge to the Universe, so if anyone out there is listening, don’t interpret it as such.  But….HOW MANY PROBLEMS CAN ONE PERSON HAVE?  Phew.  There, I said it.  Pity Potty be damned.  Sometimes, you have to scream “Uncle” (where did that come from?) and not worry about what other people think.  The truth is, there are ALWAYS people who are worse off then you (or me).  That will never change.  You can’t pick up the paper or turn on the television or even, just look around you.  Okay, that being said, it feels rotten to feel rotten all the time.
Sick and tired of being sick and tired doesn’t touch it.  And I do plenty of “alternative’ stuff as well….if I could flush all these damn pills down the toilet I would in a split second (once I was safely off them….trust me, there is ZERO mental attachment to this crap.  In fact, I am always perplexed and astonished that people do this for “recreation”.  I get that there are back stories I know nothing about.  But if being born with NF isn’t a ‘back story” I don’t know what is.
And pain is pain, whether it’s physical, emotional, spiritual, etc.  Whether it’s self imposed or the result of the “luck” of the draw, it’s all the same in the end.  I mean, even if there is no physical “proof” of anything being wrong,  it still hurts to hurt.
Still, being in pain from spinal tumors, losing all feeling, needing things that are way out of my tiny budget and not being from a family of extraordinary means, it’s beyond difficult.  I work my butt off to find deals for this or that, forgiveness for medical bills, charity applications…whatever it takes.  I don’t think people around me know or appreciate all that I do to save a couple of thousand dollars a year.  I don’t want a medal for it anyway; it’s my job.  But eventually, I will not be able to do those things.  I don’t want it to get to that point.  I want to exit.
My financial dependence on my father has got to put an enormous burden on him…he’s got his own health challenges and is older then me, naturally.  I want out so bad I can taste it.  In the meantime, a girl can still dream, regardless of her age.


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