Thursday, May 6, 2010

Define Busy.

I've been complaining about not being busy, but I’ve come to realize the thing that upsets me is the lack of pleasurable things I do to keep busy. I had this idea (that I thought was brilliant) to make a pie chart and presentation to show the doctors how much free time I had. I had my business outfit picked out and everything. I sat down and looked at the numbers I had come up with. When did I have time for anything before? There is no way I fit sports, school, homework, and a social life in. I’ve come to find out maintaining your body consumes a lot of time and energy. The way I think about it is that the average teens job is to go to school. Right now, my job is to focus on my body. Needless to say I won’t be showing the doctors that chart.

We saw Dr. Adams Monday and she sensed my frustration. So of course we had to talk about it. The best way of explaining where I feel I’m at emotionally is that it is very, very slow process, but my health is improving. So many answered prayers and hopes. Boys, clothes, high school, driving, and sports will be there when I get better. It’s hard to accept, but I'm working on it. The stupid steroids like to mess with my personality; which I'm not digging so I'm looking forward to tapering those. It’s not that I just want to do one thing like go to one movie. I want it all back. And I’m learning to accept that right now that isn’t ideal. I’m in a good place though. I can honestly say that. Give me twenty minutes; it’ll change. Then I’ll change back. Then again. That's the beauty of steroids.

We are trying to make sure we differentiate between boredom and fatigue. We are focusing on filling my cup back up...with enjoyable things! I've been doing a lot of computer work. Chelsea turned sixteen and I planned her a birthday surprise. Plus, I got permission to venture onto the tennis court. It was the first time in fourteen months I'd held a racket in my hand. I had batting gloves to protect my hands and the first swing I missed the ball by about a foot. It was interesting. I didn’t know what to expect. I can’t completely straighten my arm from the infiltrate last June, but I wasn’t too bad. My feet were incredibly slow and I lasted for ten minutes of my Dad on the other side of the net hitting the ball directly at me. But it was a nice release of frustration. It felt natural.

Concerning the medical world my GVHD has been acting up. We’ve been moisturizing constantly…coconut oil, Aveeno lotion, Neutrogena oil, Tacrolimus cream, and steroid cream. You name it; I probably have to use it. It’s not too bad though. Might as well come out of this with well-moisturized skin! And when my Dad is willing to massage my feet every night; how can I complain? Monday, my glucose levels were sky high. I was informed that it wasn’t my fault. It is a temporary side effect of the steroids. I was so upset; “Don’t take my ice cream! It actually makes me happy.”, was the tune of my response. They said I could eat sugar free. Score! So I spent an hour and a half online looking for sugar free brands. Poor Mom, my grocery list was ridiculous.

Gamie took me to clinic today. It's the first appointment my mom hasn't gone to in fourteen months. That's crazy! She and my Dad left for the Arnett state baseball tournament. I wore my Wildcat shirt to clinic to show my support. Let’s go Wildcats!! I am home from clinic with news that my liver functions are on the downhill trend. They are slowly decreasing. No leaps and bounds. We are going to adjust one medication that is known for irritating the liver. We want to make sure we are treating the right problem. My Tacro level wasn’t therapeutic and the change in medication could lead to a faster rate of metabolism of the Tacrolimus. So that was upped ever so slightly. My other labs are looking beautiful. My glucose is still elevated, but was lower than the outrageous level it was Monday morning. All great news.

I wanted to end by saying thank you for being a part of my journey. Whether you listen to me complain and vent, pray for me, or even just think about me; I appreciate it. The love I’ve received is extraordinary. I am so thankful. We just stopped to get baked Doritos and I believe they are calling my name. Until next time…keep climbin!

I had this blog ready to post when I received the most wonderful news. My chimerism results came in..well part of them. My whole blood is 100% Ryan and 0% Carolyn. I'm sobbing tears of joy. Miracles do happen. I want to shout it from the roof tops. The sheer joy and relief that has been placed upon my heart tonight is indescribable. Thank you, thank you God!


  1. Congratulations!!! YOU and your family DID IT...but will still continue the prayers:)

  2. YAY RYAN! I love that last paragraph! wow you are one busy girl! you definitely would make a pie chart that is totally you! Well poor liver but everything sounds good which is always a good sign :) I am so excited now 100% WOW! I love you you will always be in my prayers and thoughts :) keep a climbin!

  3. Ceci, I love the shirt you're wearing in your pic! I'm wearing the exact one right now:) It was so good to see your mom and dad at the ballgames. Wish I could've been seeing you, too, but your mom gave me a hug for you, so I guess that works;) Hooray for the chimerism results!! That is awesome!! The other night I was praying, and I just told God that I really wanted to see a miracle, and I do believe, that you, Ceci, are going to be that miracle! I have that faith and I know you do, too! Keep Climbing! Love ya, Jena

  4. What great news. I am so excited for you and will continue to keep you in my daily prayers. Hang in there. You are amazing !


  6. Yeah! We are celebrating! I'm finally reading this on Mother's Day and can't think of a better present ever. 100% Ryan! Way to go! Hugs from WA! Tamara and Richard