Saturday, June 5, 2010

A Lovely Realization

Oh, life you are so confusing. I realize that's a very broad statement, but that seems to sum it up. Emotionally, physically, mentally, and's all confusing. There are moments I feel like nothing could get harder or more overwhelming and then they do. Yet, there are moments that I feel at peace with the ways things are. It's strange.

Just when I thought I had done all of the "soul searching" I could possibly do; let's just say I found some more soul to search. We will never be done growing and learning here on this earth. It's been quite a week. I don't know how to sum it up honestly.

Medically things are all over the place. They are constantly changing medications and routines. Which is very stressful for a girl who likes things organized. I dealt with "petty symptoms" all week. They just pile on top of each other. Charlie horses, headaches, warm to touch, toothaches, nausea, dizzy, weak legs, itching, heavy eyes, extreme fatigue, etc. The majority of the symptoms were attributed to low magnesium and electrolytes, but there are so many contributing factors. My blood sugars are still fluctuating, but are improved! I haven't had to take insulin four mornings this week because my level was in the target range! My tacrolimus level was upped to 5ml. That is the largest dose I've been on. Since we are getting farther away from the posaconozale, it hasn't shocked us that it is being metabolized so quickly. Oh, and I am absolutely thrilled to report that we are down to 10mg twice a day on the steroids! Uh huh, oh yeah.

I always complain about being tired and after thinking it through my Dad realized that I haven't gotten more than 4 hours of consecutive sleep a night since January. I wake up about 3-4 times a night to go to the bathroom because of the 10 hour infusion of fluids I receive. Plus, on steroids; falling back asleep isn't the easiest thing to do. He brought it up at clinic and they came up with a solution. We changed the type of infusion to three hours. I wouldn't mind a better nights sleep. This was a welcome change. We have used three different forms of IV fluids this week; the pump, the party ball, and the dial pro. Hopefully, the dial pro will be a nice fit for both my medication and my sleeping schedule. To be quite honest; I have no interest in learning how to use another form of IV fluids.

It's very clear that I like food. Specifically that of the chocolate and sweets variety. So much so that my Grandpa coined the nickname "Sweet Girl". (He always said it was becuase my personality, but I think it had to do with food). I had been using the excuse of steroids to consume large amounts of food. I would even dare to say I ate for comfort in those rough two weeks. Well, it's the complete opposite as of late. After one of my "aha moments" I realized I would have to face my own problems and feel my own emotions rather than drown them in a bowl of ice cream. (That and I had to start carb counting). I am so proud of how I've been eating. I am on a proper diet. It's beyond strange to me. I eat lots of vegetables and my big splurge is a bowl of ice cream. Like I said, if you know how much chocolate I used to eat you'd realize how far I've come.

We had a photoshoot about a week ago with our friend, Annie Gerber. She is an amazing photographer who wanted to capture this phase of my journey. It was so much fun! We spent an hour at a bird park here in Gilbert. You should check her blog out:

I've struggled this week with the fact that I go to clinic twice a week and have 4 people sit in a room and decide what I do, when I do it, and who I do it with. I'm sixteen years old. I don't really like scheduled naps. My phone alarm went off and the doctor joked about it being a boy trying to get ahold of me. That shouldn't just be a joke. I shouldn't be worried about meds, shots, carbs, and insulin. I wanted to scream. I wanted to get out of that room immediately. It wasn't supposed to be like this. But you know what I realized? Right now, I don't have all of those things, but God still gave me the chance in the future. Yes, my situation sucks, but I'm still here and I can handle this. I can suck it up and get through it. There are so many other families who don't get that second chance. I'm so thankful for it. The next time we catch ourselves complaining about something small and petty; let's all promise to stop and realize that we could have it a whole lot worse.

I want to make one thing clear: I'm going to keep going. You don't have to remind me to "keep hanging in" or "we're going to get through it". I know that. I believe it whole heartedly. Right now; I'm just trying to manage everything being thrown my way. My suffering is for a greater purpose. I'm not sure what it is, but my pain is not pointless. God's got a plan. And that gives me the ability to push on.


  1. You are AMAZING! My dear friend Glenn Friedman from Chicago (who commented a few times on yourblog and shares many things with you) returned home last week--one day before his 59th birthday. I know God has a plan for each of us. You are helping us realize more and more about our individual plan and how we need to make certain that GOD is an integral part of it. Hugs from WA!

  2. I love your new photos! You are so beautiful. It's obvious that it radiates from the inside out. Life is a journey for all of us and we all need to stop and be thankful for God's gifts more often. You continue to inspire even if you don't realize it Ceci. You open our eyes to the important things in life and I am thankful for that. Have a fabulous week! Love, Kindra

  3. Heather DriggersJune 8, 2010 at 2:16 PM

    I'm so glad you posted!!! I look so forward to your posts because you inspire me!! You give me great morsels in each of your postings. You may just be an inspirational writer/speaker after this is all done! Love you!! Hate it that fluid thing didn't work out! :(

  4. Great pictures!! Love the ones with your Mom.
    You give us all inspiration overload :)

  5. Oh Ceci! God is going to use you in big, big ways!! He's already using you to touch every single person's life that knows you, that reads your blog, etc. But by the time you've made your entire "climb", I just know that your faith and your story are going to be a witness to more people than you could have ever imagined! You may not think about being a role model to people older than you, but let me tell ya, you are one of my role models. You have handled this situation with such grace, and I am in awe of you for that. I think about you a lot, and pray for you even more, but this past week, it's like you've hardly ever left my mind. Please know how important and special you are to me and so many other people. Love ya, Jena

  6. I learned something this weekend at church camp and that is that God has a plan for everyone. God has perfect timing for you and he will never forget about you. Even though it seems like he isnt there sometimes he is and it is just another part of this amazing plan for us. I agree life is so confusing sometimes but this weekend I just prayed and prayed and it helped- a lot. Well now we need to work on decreasing that Tacro. I pray about it every night. i love you so so much!

  7. Way to go Ceci!! I love you girl!! <3

  8. Cute, cute pictures, Ceci! Looked like you had fun, too. I sure agree with you that we will never be done growing & learning here on this earth----lots of ups & downs----then that wonderful God given peace--isn't it sweet....and you are sooooooo very sweet and determined and uplifting. I think you could preach. (Wouldn't your Granpa be proud?) Really, you are touching so many lives with your wisdom and encouragement. We all refuel our lives just by reading your posts. Thank you for being you and sharing who you are. Much, much love. Kathy & Rexie

  9. I absloutely love your pictures! For some reason, that tricky thing I call Facebook was not allowing me to comment on them, but they are all so precious! Your knowledge on everything (Medical terms, school wise, and most importantly life) is incredible. You always remind me to enjoy life and know that everything will turn out how God has planned. The Sorensen household continues to pray for you!
    Love always and dearly,

  10. Ceci,
    I kow just about everyone has told you this, but i'm going to say it again. You inspire so many people it is ridiculous. you are an absolutely amazing girl, and i'm glad i got to know you last year. Many people are going through a rough time right now, but you coninue to remind us that we could all be worse off. thank you for being such an amazing light and reminding us al what God has given us. i will continue praying for you!