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Thursday, June 7, 2012


I’m laying here wondering why it is so hard to just be who we are.  Or why it’s hard to be who I am.  Don’t want to point fingers at anyone!  I think it’s because I am so afraid to reveal how terrified I really am of this disorder.  I put up a front, but it’s been breaking down quite a bit lately.  I’m in so much pain, and so ready to see my neurosurgeon again that I didn’t think about the week next week when I made the appointment.  It’s actually the week after next, but as soon as I hung up, I knew they’d call back to tell me I’d need an MRI first.  And two hours later, they did.

So next week is a big one for my family.  My niece graduates high school, my dad will be in town, and I feel so horrible all the time I just don’t know how I’ll make these events and see him as well.  So the MRI was scheduled for next week…a long process because they do the whole spine and my brain (what’s left of it) so it will be two hours and they need to sedate me because the pain is so bad I lay there that long.  They had to stop it last time and I was sobbing my head off when they pulled me out.  So sedation and painkillers will be welcomed.   

Only no one can take me that day.  It’s just a bad week.  So after HOURS of trying to make it work, I had to cancel the whole thing and will start over tomorrow.  They were very, very nice about it, thank heaven.  She was surprised they got me in that fast in the first place (the scheduler/nurse).  I hope I don’t need to reschedule the doc appointment.  I hope they can get me in before the date, because if they can’t I need to reschedule that as well.

In the meantime, the bowels are not working again….on again, off again. I try and work it so on days I have things scheduled I’m more likely to be constipated but these plans are stupid.  They don’t work.  Nothing works in me anymore.  Nothing much works in my anymore.

But, I practice letting it all go, and sometimes I succeed, sometimes not.  I give it up to the Highest Power and it’s like air being let out of a balloon.  I feel it in me instantly.  Wish I could hold onto that all the time.

This life isn’t for the faint of heart.  That Vietnamese man with the 200 pound NF tumors has a smile that stretches across the world.  He amazed me.  I didn’t see the show, but I saw the preview on YouTube or HuffPost or something.  It saddened and encouraged me.  Saddened me that his Lot in life is to be living somewhere that is not equipped to help him, even when it was smaller (the tumor) and encouraged because his strength gives me strength.   I pray that the doctor who is flying there to treat him is successful, and that it does not grow back (it did once already, they often do.) and he lives the rest of his life the happy man he is today, only mobile!


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