Tuesday, April 3, 2012

Most of you know me as a 15 year old sophomore in high school, doing school and other things, just enjoying life so far. However, in addition to the normal stresses and problems facing high schoolers, I’m also dealing with an incurable disease, which has changed my life completely.

This is my story, so far.

After coming back from Spring Break in my freshman year, I started having weird symptoms and pains that affected everyday life. I began work up for a rheumatologic disease. I continued to finish school, having to play softball on and off through the season, depending on how I felt. At this time I had fevers often, headaches, stomach aches, joint pains, muscle weakness, muscle pain, shortness of breath, chest pain, extreme fatigue, and dizziness as daily symptoms. But life kept going and soon school was finished and it was summer. I continued to go through many, many tests, and doctors. We began slowly ruling out one disease at a time, in attempt to find what was causing these problems by elimination. The doctor appointments were not fun, and the tests were painful a lot of the time, but I made it through. In the summer I tried to prove that I could still do sports and I was strong enough to continue my life the way it was, so I joined a hockey camp. On the first day I couldn’t make it past the first 15 minutes of warm up skating, and had to cancel all sports plans for the summer, and was banned from physical activity by my doctor.  Soon fall came, and school again. Starting up again was rough, and I began missing a lot of school.

For my health situation however, it has been continually worsening and although we are closer to figuring out what disease(s) is attacking my body, we don’t know for sure yet. Unfortunately, being as we have no definitive diagnosis, no treatment or attempt for treatment can be given, just a few pain medications to try to help me get through the day. My symptoms have increased to, including the ones that I started with (which have also worsened considerably), now I have been losing weight, I lost my appetite, my gut can no longer process food correctly and I depend on medication to eat. When I eat I have awful stomach pains which can last a long time. I often can’t sleep at night, my eyes swell up and are very painful, I have difficulty swallowing food or water, my heart rate is often way above what it should be, my temperature now goes from a fever to being hypothermic, I have extreme Reynauds in my hands and feet, my lungs have been getting much worse, and I have muscle atrophy. I think that’s a pretty complete list.

I can’t explain how difficult it is to go to Cranbrook, to try to live a normal life, and to be struggling with a potentially devastating disease, knowing that there is a chance you might live through it. Every day is a fight to get out of bed, and I find I have to often force myself to suck it up and go to school. Life is complicated; there are so many different parts that make up your life. School, family, friends, your circumstances, and how you choose to live it. For me, slowly the different parts of my life, and what I thought made me, me, have been taken away. I have been banned from all sports, which were what I enjoyed so much, and I miss them completely. I’m not even allowed to do a push up. My grades, what used to be As, are now all falling consistently, which is hard to deal with especially when I know what I can do. I have also had to give up my instrument, and almost all social activities outside of school. I find I barely have the strength to make it through five days of school, and if I try to do extra things during the week, I can’t finish. As of right now, I have not made it a full five days of school since November. I have missed atleast one day each week. It’s crazy, and trying to make up all the work and catch up in class discussions and keep up with what we are learning is almost impossible.

I also struggle with even the easiest things. Such as, when I wash my hands, a lot of times I have to rest my arms on the sink because I don’t have enough strength to hold them up. When I go up the stairs sometimes I have to sit down half way up because my heart is beating extremely fast, I feel like I’m going to faint, and my legs are giving out.

Coping with the drastic changes and dealing with what my life has become is almost impossible it seems. Having such a normal life has turned into a huge challenge. By sharing this with you, I do not want to complain or get sympathy; all I want to do is encourage you. Life is unexpected, incredibly hard, and sometimes impossible, but enduring what comes and pushing through makes you the person you are. Never give up hope, and always press on.

Thank you for reading. 


  1. Dear Anna,

    No doubt you have inspired many while growing up and will continue to touch other people's lives and inspire them with the story of your life. You have chosen to live your life surrounded with love, sharing your love, facing your struggle head on with courage and determination. You are an amazing young woman, and one of the bravest I know.

    I love to see your pictures (your mom posts on FB) with your beautiful smile. You certainly make this world a brighter place!

    Our prayers are with you.


  2. nice blog, chu better keep it updated at least once a week dawg.

    live long and prosper
    keep fighting, stop struggling
    aim high.

  3. Anna, by writing this you have brought hope to many. You have had to grow up quickly to face these challenges. Please know that you are in the prayers of many. God bless.

  4. Praying for you! And you are bring a lot of hope, keep it up and stay strong in the Lord.

  5. Anna, all the Grimes' are praying for you. You are a great reminder to love & trust God in all circumstances. I'm so sad that you are going through all of this, yet am so encouraged by your courage. We will continue to pray in earnest for you!

  6. The Scott family is thinking of you and sending hope and strength.

  7. Dear sweet Anna! Thank you for allowing so many into your world. Thank you for still being you...you ARE still you. Sports and grades never have defined you, and you have handled this life change most graciously. What will never change is that you are a daughter of the King, and you love and depend on Christ - that's who you are, and nothing can harm your soul. I agree with Valerie about your courage, supernatural courage as you look to the God who gives it, and we are seeing the testimony of His extravagant grace in your life. As our pastor loves to say, you are a trophy of God's grace! What an example you are to everyone, of all ages - God is being glorified. And your smile makes us all smile, as it spreads the love of Christ in you. God bless you, dear heart...love you and praying for you!! Mr. and Mrs. Nagle

  8. Your the most strongest and the most beautiful person I know. Keep fighting and don't give up!
    From Stu

  9. ay i know your life has been like a roller coaster for like the past year or so. But i just want you to know that you life story has touched and inspired so many people. Your being a great light for Christ through all of this buddy. God knows exactly what he has planned for your life and im sure it's going to be something AMAZING!!
    Hang in there whiz,

    http://www.youtube.com/watch?v=thUggnyMI6c&feature=relmfu Gods gotchu covered :)

  10. Hi Anna!

    I am sorry to hear of your daily struggles. I too have scleroderma. I was the youngest person to develop the illness when I was 15 as well. I was diagnosed when I was 16.
    My life was given 5 years. Anna, I am now 41 in May! Man did I fool the doctors!
    Continue to fight, but remember to be happy for what you have and what you can do. Do you have a local Sclerodema Support Chapter near by? They are helpful, as well you can provide help to the other fighters!
    Stay Strong and be possitive....dont let SCLERODERMA win....its your fight, you decide who wins!

  11. You're an inspiration! Stay strong :)