Wednesday, July 27, 2016

The story of the ant and the camel

I once read a book to my first graders about an ant and a camel.  The ant was on a journey and in order to get to his destination he had to climb over these very large mountains.  Unbeknownst to him, the mountains that he had to climb were actually the humps of a large camel.  The story was a folktale.  I can't remember the moral, but I have been thinking about that book today.
My GI tract is feeling great.  It still amazes me that I can eat a meal and not have pain in my colon immediately afterwords.  (It helps that I don't have a colon anymore).  I can get in the car with a snack and not worry about where the nearest bathroom is.  For me, after 30 years of living with that necessity, it is nothing short of a miracle.
That is the first camel hump.  That part of my body is healed and I am comfortable living with an ileostomy.  This will be okay.
Yesterday I went back to the neurologist and he informed me that I have some sort of neurological disease/condition/or something that is progressive and making me weaker and my neurological system less responsive.  He is sending me to a specialist at Columbia Presbyterian for a second opinion.  He is very concerned.  I need a spinal tap before I go in order for them to see my spinal cells.
This is the second camel hump.  Right now I am the ant stuck between the humps. Once I received this information, I immediately fell into that abyss.  I am desperately trying to pull myself out of it by being proactive and positive.  I went back to PT this week, and I have new exercises to make my muscles stronger.  I am trying to focus on the good things that we have coming up in the next few weeks - Sarah's graduation party, a short family trip to the beach, and a night away with Adam.  But all I can see is the looming other hump.  I am having trouble seeing beyond it, and how I am going to get to my destination.

Wednesday, July 13, 2016


Sitting on the bleachers at my son's baseball game late last night, I was listening in on a conversation two friends were having about a recent "sabatical" from Facebook.  One friend was explaining that she felt as though when her kids were younger, she spent a lot of time living through experiences with them and just seemed happier, but now she feels like she spends her time documenting the experiences and is not as happy (maybe not her exact words but my impression of the conversation). I thought about that a lot last night.  I spend an enormous amount of time on Facebook right now.  And I really have been since last November when my UC started to control my time away from other things in my life.  And I can see my friend's point.  I feel like I am documenting my life at times rather than living it.

Sometimes looking at Facebook makes me feel bad about all the things that I am not doing this summer.  My time hop memories come up every day and I look at our previous trips to Ocean City, or playing miniature golf.  And those are things that I have difficulty doing now, and it kind of bums me out.  Or I see the exciting trips and adventures that friends are on, and I get a little envious of their ability to be out and about, moving quickly and freely through their life while I am struggling to walk down the driveway.

I realize that right now, documenting my life is living my life.  I am documenting my journey - my trip - in order for me to see the progress that I am making.  In order for me to inspire and support others I am documenting my trip down the driveway, or a simple trip to the movies.  I feel success in driving to see friends and going out to dinner with my family.  This is my journey right now.  Though it doesn't involve a plane ride, or a trip to the beach, or even miniature golfing, it is still my adventure.  Eventually those things will happen again.  Right now I have to be content with the small steps.  So I will continue to document my life through this blog and on Facebook, and read about the exciting things that my friends are doing.  I might feel a little envious, but that is okay.  I am on my own journey.

Monday, July 11, 2016


I joined two Facebook support groups.  I am not sure how I feel about this.  I recognize that many people join these groups and reach out when they are at their lowest, or they need answers to some serious problems.  Some of the posts are hard to read because I am not there emotionally or not having those problems.  That can be scary at times.  I am trying to weed out what I need.  And if I post a question, there are a lot of people around the world who can give me an answer.  User based answers, not doctor based.

I have been connected to a friend of a friend who has UC.  She is going to have the same surgery I had in one week's time with the same surgeon!  I am finding that this is more reassuring and giving me more support than anonymous support groups.  We don't really know each other, but we are emailing back and forth and writing about our fears and accomplishments.  I feel like since I am a few weeks ahead, I can help her, and that makes me feel good.

Support has come in all forms.  Dinners from friends, cards in the mail, my kids bringing the walker up and down the steps, apologies, my daughter sending me the exact right blog post at the exact right time, text messages, catching up at Paneras, visits, honors, flowers that don't die, the greetings I get from my kids' friends, and the expectation of normalcy in my everyday life.

Tomorrow will be three weeks post op.  I am feeling really good.  I am down to ibuprofen in the morning and something a little stronger at night.  The pain is totally manageable.  More so than I imagined at this point in time.  I am drinking a lot of water and have introduced iced tea into my repertoire which I am handling well.  I am still eating a pretty basic diet, but I have eaten pizza!  I love pizza!  And it seems okay so far.  I am nervous to eat fruits and vegetables, but I'll get there.  I am changing my bag independently, and my care has become routine.  It is interesting, but this whole process has made me slow down.  Slow down when I eat, slow down when I walk (well that is for other reasons), slow down when I get ready in the morning.  I am not rushing to get things done, because I can't and because I need to care for myself in a way that takes time and patience.  Time and patience is how I can support myself.