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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