Wednesday, May 25, 2016

Tomorrow

I look to tomorrow with such apprehension.  I am meeting with the surgeon at Penn to discuss/schedule surgery.  A colectomy.  My colon removed.  An organ taken out of my body. Forever.  
I feel apprehension because this is such a big decision and one that has taken such a long time to come to.  A fear of the unknown - lots of questions, lots of uncertainty, lots of concern about care and maintenance, and pain, and bodily functions, and normalcy, and what will normal be.  But I suspect that these questions will be answered tomorrow.  I have written them down so I remember to ask.  

I have a love/hate relationship with my colon, for pretty obvious reasons.  It really has given me quite a run for my money over the past thirty years.  It always reminded me of this book that my Mom used to read to me when I was little - 'when it was good, it was really, really good.  When it was bad, it was horrid."  
Will I miss it?  I guess I will.  After all we have had a life long relationship.  Tumultuous most of the time, but a relationship all the same.  
I have relatives and friends that have had their colons removed.  I never asked them if they miss their colons.  I suspect not, because of how much grief their colons gave them.  I should ask them. 

Tomorrow I will know more.  I will have more information, and the start of a plan.  And those things are good.  


Thursday, May 19, 2016

Joy

I never realized that being a teacher is so much a part of who I am until recently.  I have been on medical leave since January.  Not teaching, for me, is like missing a small limb.  I really feel like something is missing, and when I get a taste of it, I feel whole again.
Yesterday I went to visit my kids.  Under the supervision of the most amazing instructional assistant, they had organized a surprise for me.  When I walked in all the kids were lined up in white t-shirts with letters on them that spelled out "We <3 love you <3 Mrs. Dauer!!.  They read letters, gave me flowers, had designed a teacher's chair, and one of the parents put together the most lovely scrapbook.  After the celebrating, I sat with them, and listened to things they had to tell me, and read them a book.  I read them a book.  Pizza for Breakfast.  I know that seems like such a small, simple thing, but it was all I wanted to do.  And it was such a treat for me.  It was a book we had read earlier in the school year, and I remember it to be a huge hit. One of the girls in my class saw the title and said, "I was hoping that you would read that again.  I love this book!".  I was overwhelmed (and still am) with joy and love and the sense that this is where part of my heart and soul belong.

I never realized that being a Mom is so much a part of who I am until recently.  I have been on medical leave since January.  I am home for my teenage children when they come home from school.  This is the first time that I have been home after school with my kids in nine years.
A few days ago, I was driving my son home from a baseball game.  It was quiet in the car.  I am sure he was thinking about all the homework he had to do, but I just kept glancing over at his mature face that has changed so much over the past year.  He shared some important information about his life with me, and I was honored that he would.  
The next day, my senior daughter came home for lunch with a friend.  I sat with them as I ate lunch and listened to their opinions about politics, and stories about school, and plans for their future, and discussions about prom, and I was so content.
Two days ago, my middle daughter had a surprise 16th birthday dinner for her closest friend at our house. She was so appreciative of being able to hold the dinner here, and have her friends over.  I sat back and just listened to them and their laughter, and appreciated the memories that they were making together.
What a treat to be able to be so present for my kids.  I was overwhelmed (and still am) with joy and love and the sense that this is where part of my heart and soul belong.  

Thursday, May 12, 2016

Acceptance

All my life I had this feeling that I was not quite accepted for who I am, that who I am is not enough. It was something I was very conscious of as a tween, then a teenager, a little less in college, and then as I became an adult it got buried in the back of my closet but I always knew it was there.  This is not to say I didn't or don't have good self esteem.  I am confident to say what I feel, and do as I should, but there is always this sense of what I say or what I do - that it is not quite enough.  I heard someone describe it this way when describing another:  She feels like a part of the puzzle but not the center pieces, somewhere along the border.  That resonated with me.  Why I care, I don't know.  Maybe others feel this way.  Maybe they care about what other people think of them the way I do.  Maybe their feelings get hurt by the littlest, inane comment.  All I know is that I work on this.  I am enough. I am beginning to see it differently.  What that person says or does or how they respond to me, has nothing, absolutely nothing, to do with my self worth.  I am worthy.  And all of these feelings of not being accepted, it is time to let them go.

Tuesday, May 3, 2016

Today I am angry.

Today sucked.  It just sucked.  Many of my symptoms are back - the ones I thought were gone and just wrote about a mere three days ago.  I was in bed for much of the day.  Or the bathroom.  I ate one meal.  I drank a lot of water.  I was exhausted.  I had pain, and all those lovely things that come with my UC.  I was napping when my kids came home from school, and I hate that because I am pretty sure that makes them worried.
This confuses some people.  How can she be getting better than all of a sudden not be getting better? How can the medicine be working than all of a sudden not working?  I wish I knew.  I wish I understood this.  Tomorrow I have to go for some lab work.  Maybe that will give me and the doctors some answers.
In the meantime I spent the day feeling sorry for myself. And then I felt guilty because I was feeling sorry for myself.  I always feel guilty about feeling sorry for myself because there are so many people out there, many whom I love and care for immensely, who have it much worse.  I have been told many times by friends and therapists alike that I don't need to feel guilty.  I am allowed to have these feelings and it is not a competition about whose life sucks more (insert snarky laugh).  I can own these feelings.  I can allow them to creep up.  So if I am allowed to feel sorry for myself, isn't it rightly so that I am allowed to feel guilty about feeling sorry for myself?
A good friend was checking in on me last night. I told her that I don't want to feel like this anymore. I just want it to go away.  And it won't.  The UC is a determined little sucker.  So today I let it win.  I let it make me feel sick and sad and sorry for myself and guilty.  All those very unattractive qualities. Tomorrow I am going to get up and feel more determined than the UC.  I am going to read my affirmations and clear my head and do what I need to do to get myself back in the right frame of mind.  Because today just sucked.

Sunday, May 1, 2016

On My Way...

I bumped into a friend today at Target.  He asked how I was feeling, and I said a lot better.  And that is true!  I am feeling a lot better.  I am not sure if it the Remicade treatments, or the adjustment to some other medications, or a combination of both.  But I am feeling a lot better.  Is it perfect?  No. This is what does "a lot better" mean to me...
It means I can leave the house pretty much whenever I want because I know I can get to a bathroom on time without having an accident.  
It means that I am still going to the bathroom a lot, and I am still a pro at finding public bathrooms.
It means that I am living with a lot less pain than I was. 
It means that I have some energy to do things like clean the bathtub, or go through piles of junk.
It means that I still feel like I have to sleep a lot more than the normal person.
It means that I went on a date with my husband this weekend and we laughed (A LOT) and talked and watched a silly movie.  And I was focused on our time together and not the fact that I would have to run to the bathroom.  
It means I can put some more energy into getting my legs stronger because my immune system isn't fighting me every second of every day.
It means that I don't have to fight to stay positive, but the positive emotions come more naturally.