My special dream

After you read what I'm about to tell you, you're probably going to think I'm nuts. I assure you, I am only slightly nuts!

I told you that I have 2 liters of TPN running over 12 hours while I sleep.  Well that creates a lot of urine and I have to get up every couple of hours or so.  It's just how it is.  I have been doing this for 6 years now. Most of the time, I wake up on my own but my mind has figured out a way to get through to me if I don't.

My mind creates a scenario in whatever I am dreaming about at that moment and inserts a scene where I am peeing.  I am so not kidding.  Last night, I must have been sleeping hard and didn't wake up on my own.  I remember in my dream that I had climbed up on this thing and it had a bucket like object there filled with ice water.  (hey I don't claim to know what the hell all the details mean!) I remember emptying some of the water and sitting on the bucket and peeing.  I also remember that after I was done, it had spilled over.  I took that to mean that if I didn't wake up quick, I was going to wet my bed.

I woke up.  It really doesn't matter to me if you think I am making this up.  I know the truth and I have no idea how my mind came up with this way to get through to me while I am sleeping.  But I have to admit, the body and mind are freaky things.  I am grateful that my mind does this for me.  I certainly don't want to wake up in a wet bed!

I thank you, my special dreams.......

3 years

So it's been 3 years since my last surgery.  I have not been hospitalized in the past 3 years either.  I think this is a new world record for me.  Do not be under the delusion that that means I've been healthy because that just isn't true.  The longer I go without surgery, the more sick days I get until the day I just know it's time.  I've told my MD that I will call him the day I need to be admitted.  I can't explain it-I just know when it's time. He keeps trying to give me medicine but nothing works for scar tissue!  I have had to increase my pain medicine.  I have been on the same dose for almost 4 years now and it just isn't working for me anymore.  So I guess that's a good thing right?

I think the only reason I have made it this far is because I am all alone.  I am 9 hours away from my family and I have 2 cats and no one here to take care of them should I be admitted.  I think sheer will power is the only thing working for me right now.  But I am not an optimist.  People say you shouldn't think like that.  But since 1989, I have had surgery every 3 years-that's 9 surgeries!  So it's just how it is.  That has nothing to do with optimism or pessimism.  It's just reality.  MY reality.

What happens for me, is that I eat less and less because I'm just not hungry.  I have already lost 2 lbs over the past 6 months and I'm on daily TPN to keep my weight up.  So that tells you something about my intake.  Then my intestines slow down a lot.  To be brutally honest-what comes out of my ileostomy when everything is working is water. When I'm getting close to surgery time, the consistency becomes like thick oatmeal and stuff I eat doesn't come out until the next day.

If I do an upper GI when I'm healthy, it takes 15 minutes from drinking the barium to it coming out into my ostomy.  When I am close to needing surgery, it takes upwards of 2-3 hours.  For me, I get scar tissue and adhesions that wrap around my intestine.  They go in, take all the crap out and I'm good to go for another 3 years or so.  My last surgery March 2009 took all of 45 minutes from start to finish.  Yeah it's that fast-but I still have to have staples and a month's recovery.  I don't have any paid time off so that's a month of no pay. I can't afford that.

This is my reality and it scares me that my 10th surgery is coming-I never thought when I was diagnosed in 1986 that I would be reaching double digits....