Tuesday, March 15, 2011

Heartache & Hope

Today has been a difficult one, and I don't think everything has completely sunk in yet. I had been planning to go on a spring break trip with a few friends. I was almost finished packing as we left for clinic this morning. We have become accustomed to clinic being a short activity. My labs have been stellar and we've had no need to linger at Phoenix Children's (which is a huge blessing in itself).

However, today, things shifted. Three doctors came in and examined me. I have lost flexibility in some parts of my body. I don't want to confuse you; I can stand, walk, and maybe even do a few a jumping jacks. Under the skin is something called fascia. Fascia is connective tissue that encompasses muscle. My fascia is very inflamed which causes me to lose flexibility near joints. It was small at first; only noticeable in my elbow and wrists. We thought we could maintain it with stretching twice daily and massage therapy. We even increased my Cyclosporine a week ago to try and contain it. However; today, as we evaluated my body, there was a significant decrease in flexibility. It has spread to my shoulders, calves, thighs, palms, fingers, and feet. My team of doctors decided they wanted to take immediate action by adding another immune suppression and three day bursts of high dose steroids. (Feel free to groan here.)

The mature, strong part of me sat, listened, and asked questions to the best of my ability as they told me the plan. I had gone from beach house to a PCH couch in seconds. From the beginning, I had never liked the idea of "maintaining".  If we could improve it, why in the world would we wait?  So from that standpoint I understand and completely agree. But I am human. I cried out for patience, found myself angry, and then overwhelmed with disappointment.  I am very unsure of how this next step in my journey will unfold (and even more uncertain of how long it will take). It seems like nothing in the medical world surprises me. Tired of being disappointed constantly; I am afraid to cling to things anymore. Nevertheless, I would much rather hope for something and get hurt than have no hope at all. Hope is one thing that my medical condition cannot take away from me.  Hope that I can inspire, hope that I can make a difference,  hope in my future, and hope in Jesus.

Oh, and my doctor gave me a script for massages twice a week. BEST IDEA EVER.


  1. Hello love, I groaned with you. Maybe you will get your flexibility back if you do the wii boxing with me. I heard you're really sore afterwards. haha just kidding I wouldn't make you do that. Maybe if we sang a little more on PS3. I like that idea because you know what they say..."A little singing increases the human flexibility" Ok well I just made that up but we will go with it. I can even help you stretch more. I really enjoyed that the other night. I like when you say ok I'm going to fight against you now...go :) That is the best part! Fight against me oh that's impossible :) You maintain your GPA, your update to all of your many graphs and charts, your match lighting ability, and a very stylish hairdoo. Maintaining things is very important sometimes. Hey I love you did you know that? If you didn't...I love you I love you I love you I love you I love you I love you I love you I love you I love you I love you I love you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  2. My dearest and darlingest Carolyn,
    I've decided I'm going to get you another doctor. But don't freak out just yet! I haven't decided on the details just yet, but here's what I'm thinking . . . Somewhere between 17-20 years of age, aspiring to be a fireman, and (although it was implied in the fireman thing) absolutely beautiful. And he will be at every clinic, every doctor thing, and his soul purpose will be for you to look at. And Chelsea says that she made up that quote, but it sounds awfully familiar, so I would consider it before it's shot down! Oh! And I groaned when indicated :) I share your hope in all those things, but more importantly, I believe in you and that you will do all those things. I mean, afterall, you are THEE Carolyn Ray Christenson. Now, most importantly, I love you more than is humanly possible! You are the sun to my shine, the lilo to my stitch, the love to my life, the swim to my suit, the apple to my sauce . . . Okay, so the last few didn't make much sense, I just am not that creative. To sum up: I LOVE YOU! And that is the most powerful thing in the world. Right after God and Jesus. But they love you, so that's triple the power! You're beautiful, dear :)
    Yours always and dearly,

  3. Dear Ceci... well you certainly have some wonderful friends to support you matey! I am glad. And to have a script for 2 massages each week... I am SO jealous. I am proud of how you are handling all this. You're an inspiration. xoxo Jules

  4. Oh Ceci, I want to do much more than groan!!! I have to tell you that you are so much more mature than anyone I have ever known going thru such a rough time. I am so very thankful that you keep "climbing". I'm also thankful that you allow yourself to "feel" that anger and disappointment; and then to keep moving on to "hope". I loved your saying "Nevertheless, I would much rather hope for something & get hurt than have no hope at all". And, let me tell you, you DO make a difference!!! You encourage and inspire so many. I love your humor---massages twice a week---you always find a positive. Always remember, we are all here behind you on your climb. Much love and prayers, Kathy & Rexie

  5. Oh man I would be happy to join you for those two massages a week!! :) and like Chelsea's quote I do think a little more singing can increase the human flexibility!!! That was such a great night :) I, like so many others, am constantly inspired by your strength. I hate to see ya disappointed but I know that God has a reason for everything, even when the timing of a trial seems not right He helps us find our way through. I am in love with the song My Wish by Rascal Flatts because it just sums up all my wishes for ya! "I hope your dreams stay big, your worries stay small, you'll never need to carry more than you can hold. And while your out there getting where your getting to I hope you know somebody loves you." We all love you so so much and are here for ya!!! Love you :)
    Love, Corinne

  6. Heartache and Hope...Not too many people could put those two words together. You are quite the young lady! You know that, right?! I'm telling ya, just when I think you can't amaze me anymore, you sure enough do! You feel all the emotions just like anyone would, but yet, then you find something to be positive about, to have hope in, like most people wouldn't. You are just amazing! I don't know any other way to say it.
    I filled out all the Be The Match information online, and I should be receiving a donor kit in the mail this week! Sorry it took me so long to do what you've been so avidly trying to encourage people to do. My only excuse is that I hadn't taken the time to do so. But "time" has such a different meaning and importance to those who need a transplant. Honestly, Ceci,... I don't think I ever would have joined the National Marrow Registry if it weren't for you; if only because I would have never thought about it. So, please realize that you are making a difference, and you are helping to save lives. I love you so much, girl, and hope to come visit you as soon as school is out if that works for ya'll! Love, Jena

  7. Ceci,
    Well dear, you truly are an inspiration to those of us who complain about stuff like the essay I'm still awake working on, well supposed to be. Anyways I am so amazed at your strength and power to keep moving forward. I would also like to announce to you and everyone else a quick confession about my fexibility issues, I Chelsey Kay Smith can hardly reach my own toes.... But the good thing about it is people like me, we dont have to worry about breaking our own noses like CHELS, Kenz and Connie! :) lucky us is what I say!!!!
    God gives us all trials and tribulations because he loves us and wants us to grow and progess to become more like him. Although at times it's easy to feel stuck in a rut and like we have nothing to turn to there is always something. Look toward you're friends, Chelsea, Naomi, Corinne, Karissa...ect., your family, and most of all your God. We are all here for eachother. It's what we all do, we also get the opprotunity to look at the amazing Carolyn and know there is a reason for everything. Our Heavenly Father is watching over us and loves us, I know that is true with every fiber of my being. Ceci i love you,you're wonderful!! <3

    Your friend,
    Chelsey Kay Smith

  8. Dearest Ceci, I am so sorry that I've been such a slacker and have not been reading anyone's blogs lately. So sorry for the continued learning opportunities, but happy you are getting some massages. We got to spend the night with our dearest mutual friend Pam in March (during Spring Break). She said you are helping her with the wedding business. YEAH! I am in Camp Verde welcoming Benson Bueler--grandchild #11. Please know you continue to be in our prayers. Love you! Hugs from Richard and Tamara