Okay, I have been just terrible at posting and documenting my recovery.  I will not offer up any excuses.  I will only say that my productivity has been riding a roller coaster and it seems that I’ve been stuck in the low end of the tracks.  Well, its time to pull myself up and stay committed to sharing my story.

Soooooo, since I’ve last written, many things have been developing but I will start with today and work my way backward.

Today marked a urological milestone.  Back in August 2011, while under the care of a UCLA urologist, I had a supra pubic tube inserted just below my belly button.  Because of my lack of mobility below the waist and my inability to move my legs or lift myself, I was unable to use a catheter (insert a tube into my bladder via the urethra) to empty my bladder.  Because of increased strength and mobility, I am now able to perform this task and my new urologist (Loma Linda University) felt it was now time to remove the tube.  So today was supra pubic tube removal day 🙂  I feel very anxious and scared about this because my safety net has been removed.  I now have the task of completely managing the voiding process.   One of the ways in which TM negatively impacted me was that I ended up with a neurogenic bladder.  This means that I can not urinate on my own because the signals to and from the brain that control this process have been interrupted.  To make matters worse, my bladder has decreased in size and therefore I have little to no holding capacity, which in turn means that I have to empty my bladder almost every two hours.   This was very maddening initially when I was first learning how to self cath.   I can only now look back at my learning process and laugh whereas before there were tears.

I only had a general idea of what I was suppose to do to self cath.  I was relying on the knowledge I had from when I was at the neurological rehab unit in November 2011.  The nurses there showed me this process so that I would know when they released me to go home.   I also relied on YouTube instructional videos.  When both of these sources failed to help me, I decided that I had to have a nurse come out to my home and help me.

Let me tell you that it is very humbling to have to spread your legs for a nurse so that you can fumble around and find your own urethra while she holds a flashlight – lol.   I thank God that the nurse is the one that comes out to my house monthly to change out the supra pubic tube.  (I love you Cindy)  She was very patient and very helpful and didn’t make me feel stupid or uncomfortable.

Anyway, this is a huge next step for me and I am trying to be positive.   Noooo, I will be positive!