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Monday, August 27, 2012

Counter Intuitive Actions

I’m trying to practice being grateful for the small amounts of time I feel well enough, that is, not in agony from the pain of the tumors on my spine or the bowel discomfort, to go out for an hour and get groceries with the woman who helps me.  I’ve never been very organized and always just ran out when I needed something.  But that’s not an option anymore.  I’m afraid to drive any further than to get my mail these days, the pain is so bad.  And since I never know when it will ratchet up, when my feet will disappear on me, or when I’ll need a bathroom immediately if not sooner, driving anywhere seems crazy.  I can’t believe how fast this turned on me, never to turn back again, as it used to do.

 I wake up in a panic and until my anti-anxiety meds kick in, it’s hard to meditate or do anything else.    And trying to gain weight is a horrific challenge.  Ensure and all the other kinds of weight gaining products make me sick to my stomach, even the “lactose free” kind.  I AM lactose intolerant, but there is something in the lactose free ones that make me sick.  Every one of them has that effect on me.  While in the hospital, they gave me “Ensure Enlive” which is clear and comes in a couple flavors.  Not as high in calories, but I can drink a lot of those without getting sick.   So today, I went online (having called six stores unable to find the stuff) and found it.  I went to order it and guess what?  DISCONTINUTED!!!  Of course….what’s life, without seventeen challenges every sixteen minutes?  Kidding.  The guy was very helpful, and said that “Boost” has replaced it and is actually higher in calories.   So I was going to order about three cases and then decided I should probably make sure I like it and he said he would not charge me shipping for the first case.  Yea!!!!  Nice guy.

I don’t think I timed getting help any better than I could have.  I would NOT be able to apply for it now because I would not be able to get myself where I need to go to get the application done correctly.  I could barely do it when I did, a few months ago.  That is how fast it went for me; from barely being able to do it at the end of May, to NOT being able to do it now, the end of August.  Very scary.  I was heartbroken when I lost my first helper, Amanda, but I really could not have done better with Pam.  She stepped up to the plate big time last Monday (a week ago??) when I called the ambulance, and I am forever in her debt.  I look forward to seeing her, she works like crazy, running around getting me what I need, cleaning, etc.  And she has suggestions for me too.  She knows of a great butcher nearby, and I normally don’t eat much red meat, but I’m trying to change my diet and add more protein and against my doctors (several) wishes, LESS bulk.   I don’t have the muscle to push it out….so all that bulk and all those laxatives just sits there making noise, going nowhere.  Very frustrating, and I know I am not alone.

My friend Ted called from the nursing home this weekend…he sensed something was wrong….he has always been very intuitive.  He told me he eats very little fiber, and my friend Becky, whose daughter Ashley has NF, has the same issues as well.  I’d like to get all of us in a room with all the doctors tied up with their mouths taped shut so they could just listen and hopefully UNDERSTAND what we tell them.  It feels so hopeless.   Too much fiber is not a good thing for someone like me.

I don’t want to play anymore.  I want to take my bats and balls and go HOME.  Is anyone there?  Anyone at all?  Hello?

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