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Monday, February 25, 2013

Shrinking Heaven

I have been having a challenging time lately.   First, my caseworker is coming over this week to help me with the reapplication process I mentioned earlier.   Secondly, I had a bunch of extra expenses this month and am down to the wire until I get my next check.  And finally, for the first time in 12 years, a bottle of one of my painkillers went missing…I could see for some time I was down pretty low, but thought (KNEW) I had more.  It’s nowhere…so one of two things happened (I cleared the pharmacy): I’ve been robbed by someone or I accidentally tossed them out with the recycle.

I didn’t notice until now because I’m very conservative.   It’s a month’s worth gone and my pain doc is not too happy, to say the least.  She made me promise I’d get a lock box.  They will send me more for now, and in two weeks I renew everything.  It better be in the mail soon.  Pam has been picking them up, but the nurse told me I need a way of knowing if the bottle has been opened before it gets to me.  I’m thinking a strip of tape that once broken, can’t be fixed.  I hate thinking this.  And she knows she is under suspicion.  It will never be quite the same.  But I really trust that it isn’t her.

The pain has been brutal, and someone sent me this link; Living with a rare disease, making a difference -  (it’s a disorder, not a disease…these errors in the media drive me nuts) which talks about a new drug that is supposed to shrink tumors.  I heard about a study in mice, but didn’t know there was one for humans.  Apparently it’s a cancer drug being used off label (which is how I used Neurontin for years before it was accepted by the FAA to treat neuropathy).  So I put a call into my neurologist.  If the tumors could shrink, it would be sheer heaven.  Their growth has been sheer hell.  Alas, I just learned the trials are for a very specific tumor; Schwannomatosis

When I hear negative talk for too long I want to tear the head off the person speaking.  And right now, I can’t get one positive thought to step up to the plate.  Nothing interests me.  I heard the Oscars were on Sunday night but I literally haven’t been to a movie for over a year….the Oscars didn’t interest me much when I saw movies; now there was no need to tune in.  I don’t give a rat’s behind about not watching the Oscars, but it was another reminder of how much my life has changed.  How my tumble down the abyss is moving faster and faster.  Too fast for my higher self to catch my spirit from the fall.

I don’t know what to do anymore.  It’s too much at once.  I’m physically, mentally and spiritually buried under tons of concrete.  I know shiT happens.  I’m just not equipped to shoulder any more.  Over 30 ago, I was at a stop sign and there was this church on the corner.  On their announcement board, it read: “If your burdens are too much to bear, stop bearing them”   Guess it caught my attention for a reason.  I was in bad shape then, too and moved to tears.  It still gets me.

When I first heard this, it saddened me to be alone.  Then I listened with different ears and saw G-d

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