It's Been a While

Just call me a slacker! I had written one post since December, but I suppose I did not save it properly and did not feel the need to come back and retype it. Ah, the life I lead!

Since December I've had my ups as well as my downs. I substituted solidly for two months at one school as a one-on-one aide in a learning support setting, and another two months in a life skills classroom before being bumped again. It was a trying time because I had grown attached to the students and a regular schedule. When you sign up to sub, you have some expectations. You assume you will travel between different buildings and school districts, but you don't think about just what that entails. Brand new policies, procedures, classroom expectations, student interactions... you wear many different hats as a sub, and you have to be ready to replace one with another in a matter of seconds. It's enough to make your head spin. Forget a regular schedule and say hello to exhaustion! These last four months have shown me a side of education I had not had prior experience, and I am grateful. My time in a Life Skills class showed me how much of a difference I could do, far beyond what I thought possible while student teaching.  When I was a student, I was keeping my head above water with lesson plans and reports. I didn't have the time to sit back, enjoy the learning my students were doing, and notice how I impacted their lives (and hopefully I helped some). With special education, it's completely different. You see where they have come, how much work you have to do, and what the student has achieved. In my heart, I feel like this is the right thing to do. I'm feel confident and sure that this is what I was meant to do. I hope I'm just not convincing myself to go back to school for the hell of it and that I turn out to be a good special educator. I'm going to try my hardest.

With all the subbing, it was hard to set schedule for my pills, but I am proud to say I've stayed on course. Only a few times did I falter and forget to take my pills, but I'm back on the wagon. I'm beginning to find a balance in my life. I've started working out at the college in hopes of losing weight, I'm taking my pills, and I'm trying to diet. I know I need to try harder for me to see any progress, but I'm making steps that I otherwise would not, and for that I am proud.

My disease seems to be under control for now. In May, I took a 24-hour urine test (yes, it's as gross as it sounds!) and the results were positive. My copper level in my urine was very high, meaning my body is binding the copper together and expelling it from my body. With only a few minor slips, I've stayed away from all my restricted foods (oh chocolate... I miss you so!), so no new copper has been coming in. My doctor advised me to remain on my aggressive treatment plan for at least another 2 years, and possibly, if I reach a plateau, I can only take zinc.  My blood tests also show positive signs of improvement, with my liver enzymes returning to normal.  My body is getting rid of the copper, and my liver is healing (very very slowly, but surely). I'm so grateful for the news. I could even cry just thinking about it. As long as I stay on the right course, take my medicine, and exercise I should live a long and healthy life. Thank God!

I'm so grateful for my life and my support system. My friends have been wonderful, constantly asking how I am feeling and what they can do to help. They are sensitive to my new restrictions and share in my triumphs. My parents have been my main supporters, taking me to every doctor appointment and waiting hours with me while I have tests done. I'm sure there's a million things they'd rather be doing than listen to the news on a tiny television in a microscopic hospital room.  You never know what amazing people you have in your life until your eyes have been opened by a new challenge.

In short, I'm happy, healthy, and grateful. :)

Chapter 1: Brand New Start to an Old Concept

Lately, I've felt the need to share my thoughts and, sometimes, my emotions with a friend, a parent, hell--I'll even settle for a disciplined animal so as to not become overwhelmed or crazy. For twenty-three years my life has been simple, predictable, and safe. I graduated college with a Bachelor of Science degree in Secondary English Education. I have a wonderful boyfriend. I love to read. Within the last month, however, my life is spinning out of control.

            My brother has been diagnosed with Wilson's Disease, a genetic disorder in which the liver cannot process excess copper from his body. After vials of blood drawn and a liver biopsy taken, I discovered I also have the disease. It seems so unreal to log on to Facebook and read status updates or watch the hilarity of Jim Parsons on Big Bang Theory--things I did before I was "sick." A year ago I was speaking with my practicum professor about lesson plans and K-W-L charts. Now, I'm speaking with a liver specialist about copper coagulant drugs and the cirrhosis of my liver.

           I keep telling myself it could be worse. I could have cancer, I could be blind, I could lose the ability to think and live on my own. Luckily, the disease hasn't progressed that far, and I hope it never will.  I just can't help looking at this disease, a disease that showed no symptoms, and think that this thing is harming me. It's hard to imagine mortality when you're young. Anytime I leave my house, my mom always reminds me I'm human and to be safe while driving, but no one thinks something can happen to you until it does. It did.

           I don't want to be a burden to my loved ones. They have enough in their lives to handle. My brother has his own disease to maintain and my parents are beating themselves up about our diagnosis. We all have problems to deal with, so that's why I'm turning to this blog for help. I doubt anyone will read this, but it will be nice to let all my thoughts out. I'm starting this blog to keep track of my life, my thoughts, my disease, a snapshot of who I am. I hope it can serve as a teaching tool and that I read earlier postings with pride because I have come so far. I'm an optimist and a teacher--I believe everyone can learn something new for their greater good. Sue me.