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Tuesday, December 11, 2012

Another Fun Day at the ER

I feel like what I imagine a tennis ball feels like, if a tennis ball can feel.  I tend to personify everything from my cat (naturally) to food products talking back to me, spurring me on to eat more of what I shouldn’t be eating.  Those bad chocolates, they ought to be put away.  Maybe later.

So I had nothing but horrible constipation last week, and the week prior, nothing but diarrhea.  This yo-yoing back and forth cannot be healthy.  A bulimics dream, or nightmare, however you want to look at it.  But it’s got to wreak havoc on my electrolytes.  The best sport drinks in terms of electrolytes are ridiculously high in sugar….and I was drinking one with no sugar, but a sugar substitute which I think may have caused the problem to return.   So now I drink Coconut Water, which may not be right either….no one knows.  But there is zero sugar, no sugar substitute, doesn’t taste bad and is super high in electrolytes.

No matter how many times I tell the doctors that fiber makes it worse, they want to plug my nose and force fiber into me.  Not much of an exaggeration.  So I was in the ER nine hours…they were very busy.  They finally did a CT scan to check for a blockage, but found none.  They couldn’t see my appendix because of all the tumors so I’m guessing they may have missed a blockage.  They had only my white blood count and the fact that I was afebrile to go by.  Fine.  If I died from a burst appendix, hopefully it will be quick.  I spoke to my pain doc nurse the next day and she read a report to me from the Digestive Disease clinic and they said my problems were NF related and my colonscopy was fine.  That was eight months ago, and those of us with NF know how fast the tumors can grow.

If I want to die so bad, why am I fighting so hard?  Fear, that’s why.  Even though the known is horrific, the unknown is scarier.

So they wrote a script for this stuff called ‘go lightly’ which is for bowel cleansing before a colonoscopy.  I said, isn’t’ this the same as Miramax….she said no.  Meanwhile, it’s seven in the evening and my pharmacy is closed, so I went to the ER pharmacy with the friend who pricked me up (G-d Bless my friends….the one who took me and the one who fetched me) and when we got to the pharmacy, he said my insurance rejected it because I just had it filled.  I looked at what he was showing me and the order read Miralax.  I told him it was for go lightly.  So he had to call upstairs and we finally got it….but I started to think of all the serious mistakes that happen on a daily basis….thank heaven I was quick enough to catch it, but what if it was for some drug I never heard of and I got the wrong thing?  Scary

So it’s in that big jug which you fill almost to the top, but the powder in and chill it.  Doesn’t tastes bad; actually, it kind of tastes like coconut water.  But they told me to stop taking it as soon as I had some results.   It took 5 glasses of the stuff before I had any movement and I sure don’t’ feel cleared out….but I dumped the rest. 

I feel sick and tired and tired of being sick and tired.  I am so so grateful for the loving fiends who take me to hospitals, wait for me, bring me home, get me treats….I’m grateful for the help I get through DSHS, 15 hours a week is wonderful beyond words; I’m grateful for the food in my belly and the access to my needed medicines.  I’d be dead without all of those.  And that’s the irony, isn’t it….being grateful but praying for death every single day.  You love me enough to make sure I get something out of lie but you don’t want me.  I just want out of this body…and I pray its better.  Elsewhere.

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