Yep....it makes me MADD

Well dear readers it has been a long couple weeks.
      Just last week I was in the hospital for stomach pains and other issues. All the blood work was coming back fine and the CAT scan look okay as well. The doctors were so confused as to why I was feeling this way. I just kept thinking that it was because I needed to get the IVIG but what I didn't know is that just a few extra vitamins would make such a HUGE difference.
      While I was in the hospital I had it confirmed that I definitely have more then one thing going on with me. Not only do I have JM but I also have a rare genetics disease call MADD....funny right because that's what it makes me LOL! The disease is called a Multiple Acly-coa dehydrogenase deficiency. Try saying that three times fast.Multiple acyl-CoA dehydrogenase deficiency is a rare genetic disease that involves the fatty acid oxidation. It is due to the deficiency of one of the two electron transporters: electron transfer flavoprotein or electron transfer flavoprotein ubiquinone oxydoreductase. These two transporters do not have enough energy to break down the fats that I intake. This causes the fat to store in places it should not be stored in. Usually the symptoms begin more often in childhood or in young adulthood with a multisystemic disease which can present itself in muscular weakness. This disease will be one that I will have to deal with my whole life. I have been put on large doses of b-2 which is supposed to help my body break down the fats that are not being stored in the right place and I also have to stay on a special low fat, high carb diet.

      But enough about all the scientific junk lets just focus on the positive things! Since I have been put on such high doses of the vitamins I feel so much better. I can feel myself getting stronger everyday. I can feel my legs being able to go just a little further. It feels amazing to be getting better. From here on out its only up!  I have realized how lucky I have been throughout this whole journey. To have my family, friends and all of my dedicated readers here to support me in each step that I take.
     Well that is it for now. I did therapy today and it is time to watch a GREAT movie with my boy Connor, my little sis Emily, and my Mimi. Thank you all once again for reading my blogs. I love seeing that there are people from all over the world reading MY words! Seeing the hope that I have and realizing that there is more to a person then their condition or illness. You can do anything that you want to do as long as you have faith in YOU!
Love always,
Callie

If you would like to learn more about the Cure JM foundation please visit  www.curejm.org

It's Not Easy Being Green

When we are young we learn very quickly that everyone has a place that they fit in. From being a "nerd" to being "popular" we all have a place. Once we find that place we become comfortable and we start to have our routine. We become comfortable in ourselves. But sometimes life doesn't always go as planed.
Kermit wasn't kidding when he said that it wasn't easy being green. When you become ill people seem to treat you like you are a different person. Everyone seems to think that just because you are sick that you are not the same person anymore. And in a way they are right. You are not the same. To see life through a bigger lens instead of that tunnel vision you had before. You start to realize how close minded you used to be. But just because you changed for the better does not mean that they can understand.
They think that when you are frustrated and mad because it seems like no one can give you a straight up answer that to are giving up. They think they know just the right thing to say and they also want to fix everything. I have something to tell everyone, it's okay to not know just the right thing to say and not everything can be fixed right away. Sometimes a person just needs you to be there to hold them. They need to know that you are going to be there for them no matter how bad it gets.
Being "green" for me has not been easy but I have learned a lot. Life is so much more than we know. The past couple day the sun has been shining so bright and all I wanted to do was just sit in the sun all day and let the light hit my face, but I couldn't because the sun can cause my disease to flare. Sitting in the sun is something I used to take for granted. I will never do that EVER again.  Life is to great. God is to great. We have to live and be who are. I now know that I may be "green" but I have always been "green" maybe not the same shade but close.
Being different is always good. If we were all the same then how would we live!?!? I have learned so much from this disease that I never thought I would learn. I have so many great people in my life that I would like to take a moment to thank for helping me realize that no matter what happens that they will be by my side to help me climb every obstacle.
 So first off thank you to two of the best Moms on the face of this earth, my mommy Suzette Callais and my grandmother Karen Callais. I also want to say thank you to my sisters who always know how to make me laugh,well most of the time. Thank you to the world coolest friend and best boyfriend a girl could ask for Connor Tucker. Thanks to my two biggest "#1" fans Marie Arnone and Linda Adams. Also thanks to the bestest nana a girl could ask for Mari Ann Callais. These are the people who are in my every day life that have helped me get through so of the roughest times in my life. Not only since I've been sick but throughout my whole life. These are the people I know I can count on to be there when I just need someone to tell me that they will always be there for me no matter what happens. They dry my tears when I cry.  They hold my hand when I'm hurting. And most of all they are people that treat me as if there is nothing wrong because they know that I am still the same Callie that I was before.
So thank you to everyone I have just named and the many other people who have prayed for me and my family. Being "green" isn't easy but I wouldn't want to be any other color :)!

If you would like to learn more about JM please visit www.curejm.orh