Wednesday, June 29, 2016

Sleeping on my side

I am one week post op.  My colon is gone.  I have an ostomy bag.  I have stitches, and bruises.  I have a walker.  I am limping less.  I will have scars.  I do not have ulcerative colitis.  I have phantom feelings like I have to go to the bathroom like the average person does, but I don't, because I don't go to the bathroom that way anymore.  I have bottles of drugs in my bathroom that don't really belong there.  I am learning to manage my pain.  My sense of smell and taste have changed, though I am told that this is temporary.

I have been struggling to write this blog post because my feelings are changing so rapidly.  One minute I am strong and feeling like "you've got this Deb!", and the next I am sitting on the couch crying.  I struggle to put my feelings into words because I am sure that within the next hour they may change.  I am told that all of these things are normal, and I need to be patient with myself.  Patience. I have no trouble being patient with 24 first graders, but when you ask me to be patient with myself, well that is another story.

I am worried about unfamiliar things - things that I never had to worry about before.
I am a little afraid to leave the house, though I know that tomorrow I will force myself to do it.  At least for a little while.  Maybe 30 minutes.  And then maybe the next day an hour.  And then maybe I will have some of my friends over to visit.  And all of this will help me begin to feel like me.
I wonder what is in the space that my colon used to be.  Does the small intestine now get to stretch out a little?  Is it just an empty void?  Will I feel hollow?

I think that before the surgery I had this feeling that I would no longer be me after the surgery.  That somehow I would change.  And that upset me, because at 48 years old, I have finally gotten to the point where I really like me.  I am comfortable with who I am.   And I am slowly coming to realize that though my body has changed, the essence of who I am is really no different.  It hit me a few days after the surgery in the hospital when Adam was visiting.  I had to practice my breathing using the spectrometer.  Inhaling and making the ball move up and down.  And like two pre-teens we were laughing about balls and blowing - the same things we would have laughed at before my surgery.  It felt comfortable and normal.

Last night I slept.  I woke up in the wee hours of the morning and I realized I had slept on my side. Not my stomach like I used to, and not my back like I thought I would have to, but on my side.  So for right now, that is good enough.

Monday, June 20, 2016

Sleeping on my stomach

I like to sleep on my stomach.  I know, it is not so great for your back, but it is the way I have almost always fallen asleep, except of course, when I was hugely pregnant with my kids.  I am pretty sure that will be difficult now.  But I have been liking it to when I was pregnant.  It was a very small sacrifice that I made in order to have something better in my life.  Similar situation.  I am going to have a better life.  And this may be temporary - or not.  But its okay.  Because I am going to feel better.

I like to eat.  A lot.  I never really cared that much about food, but then I married into the Dauer family, and you kind of need to like to eat.  It really is a good thing, because Adam and his family taught me to have gusto about my meals.  I like that.  I know I have said before, that I have had this love/hate relationship with food, but it really never stopped me from loving to eat.  I am not sure what I will be able to eat, or how much I will be able to eat, or if I will feel the same way about food, or love it even more (!), but that relationship will change somewhat.

I am feeling nervous and scared, and every minute of every day I am changing my mind and about whether or not I feel this is the right decision.  I am texting friends, and talking to friends, and crying, and trying to explain my feelings to my loved ones when I am not really sure I understand them myself.  I have received the most wonderfully supportive emails, texts, words of encouragement, as well as the most well-intentioned unsolicited advice.  I have friends that have undergone significant medical turmoil of their own, who have told me they can relate to my words and that makes me happy.  All with love.

I am going to continue to write about my experiences and it might be too much information for some, but I have finally decided I really don't care.  I am not going to qualify that anymore.  This is cathartic and helpful to me, but in the long run it might help another.   Maybe this is just another journey that I am supposed to take.  Maybe this, along with being a daughter, sister, Mom, wife, friend and a teacher, is a role that I am supposed to have in order to build understanding.  Maybe it is time for me to sleep on my back.

Monday, June 13, 2016


It has been a few weeks since I have blogged.  Not because there hasn't been anything going on - quite the opposite.  I just didn't feel like I could put into words all the things that are running through my head.  And let me tell you, there are A LOT of things running through my head!  So today I am just going to ramble on about all these thoughts and concerns and emotions and hope that they come out in some semblance of order.

Surgery.  My surgery is now nine days away.  And everything I do feels like the last.  Today was the last major food shopping I will do before my surgery.  Today was the last time I will see Lisa and Abby before my surgery.  Tonight I cooked the last chicken parm. Friday night was my last date night with Adam. I am going to do these things again in my life, but I feel a finality about June 22nd that I can't quite understand.  Maybe because my body will take a long time to recover and I will be so different physically.  Not sure.

My body.  I have been looking at my stomach more than the normal person lately.  My belly. Abdomen.  The muffin top.  It is squishy and soft, like that of a 48 year old woman who has a few extra pounds.  But it is smooth and really without scars or marks.  And in nine days I will have a scar and an extra hole in it!  So weird.  I want to take a picture of it so I remember what it looks like. What the hell is wrong with me?!  I am sitting here crying over taking a picture of my belly!

Crying.  I cry all the time!  But as ALL of my friends and family will tell you, that is nothing new.  I have always been a crier.  More so lately.  I think the emotions of impending change, and my oldest child graduating high school, my middle child having her religious school confirmation, and my youngest graduating 8th grade are all compounding the emotional roller coaster I have been on. There are days when I am unsure that having this surgery is the right choice, and that sets me on another crying spell.

Neuropathy.  Weakness in my right leg, a drop right foot, and loss of balance which requires me to wear a MOFO (brace) for support, so I can walk around.  I went for some neurological testing last week with a doctor that I really like and respect.  He is confident that I should go through with the surgery, but wants me to come back and meet with him when I feel up to it so we can discuss and move forward with a plan to help with this issue.  It is not enough that I have ulcerative colitis (which is one auto immune disorder), but it now it appears that I have a second unknown auto immune disorder that is causing this neuropathy.  This realization caused me great sorrow and a day where I felt really bad for myself.  I am pretty much okay with it now, as what choice do I have!?  My friend Karen (who is one of the bravest people I know) often says you must continue to fight because you don't have a choice.  So that is what I will do!

Family and Friendship.  The amount of love and support I am receiving from all the people in my life is just overwhelming!  I am so lucky to have love and kindness coming to me from all these different directions.  This is what will sustain me in the days ahead.