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Saturday, March 15, 2014


The tricks I use to stay in the moment with this agonizing pain aren’t working today.  And lately, they haven’t been working at all.  My legs are the worst; constant stabbing up and down both legs.  And I can see the tumors have grown considerably.  The tumors in my head have grown as well, and the headaches are coming more often.   And a new NF online friend just wrote that he’s going to the doctor today because they suspect a Schwanomatosis tumor.   I’m convinced I have one too.  But I don’t want to go to the doctor anymore.  It doesn’t matter because they can’t fix me, and what they say only scares me.  Why bother?

It hurts to breathe, it hurts to move.   I am saddened beyond words that my 90 year old father lives 45 minutes from me and it’s too far for either of us to drive…well, me especially.  They are going to be celebrating his 90th birthday next week and I can’t be there.  I am tired of missing out on everything.

And I’m ready to put Vinnie on Craig’s List.  He has way, way too much energy for me.  I don’t mind him running around, but he pounces on me, knocks things over and makes it harder for me to deal, as if it’s not hard enough.  But then he looks at me like “What?” and I fall in love all over again.  Damn.

My helper came sick today and I sent her away.  I just didn’t need her coughing all over me.  Plus she’s allergic to Vinnie.  I like her and I hope it works, but I suspect she’ll bail on me, especially when she lost three hours of work because I didn’t want a sick person around me.  With all my other problems, that’s all I need.  AND, she’s taking Friday’s now because my Friday person didn’t want to work that day.  I sure wouldn’t want to be Kathy, the woman who coordinates all this.

I’ve been thinking a lot about past lives, future lives and whether or not I’ll have to return to this planet.  I pray not.  I would much rather be doing whatever work I have to do without my body.  Or any body.  I was watching “Dallas Buyers Club” last night which I recommend, though it’s not an easy movie.   If you don’t know, it’s a true story about a man with HIV and then AIDS who is a game changer in the way it’s treated.  The end is worth the difficulty in watching what he goes through.  Reminded me of a movie (whose name I forget) about the guy who was behind the formulation of the ADA (American’s Disability Act).  Hard to believe it was only about 35 years ago when access to everything from doctor’s buildings to restaurants was not available to those in wheelchairs or had limited mobility.

Anyway, while I was watching this guy struggle, I was thinking “Why is he fighting so hard to stay alive?”  This got me thinking about everyone else on the planet that fights to stay alive, regardless of their quality of life.   I can understand it if an otherwise healthy person suddenly has an issue that needs attention.  If they had a taste of all the good things in life, they fight for it.   But for years and years, endlessly, with no hope for a cure?   My mind struggles mightily to understand the why of it.   The fight, sometimes, is relentless.  But is it worth it?

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