And When I Get Where Im Going

        Last week we talked about my latest visit to the hospital where I was told that not only do I have JM but I also have a disease called MADD. By the way, that's just an abbreviation for a much longer and complicated word of which I can not spell correctly yet lol. In order to help the disease become under control I have to take special vitamins  I have to eat a VERY low fat diet, and I should also stay away from exercise! WHAT!?!?! How the heck am I supposed to get stronger from having JM if I don't exercise??? This is just crazy RIGHT?!? Not to mention the fact that my muscles already have atrophied due to the fact that I have not been able to exercise as much because I was so weak from the effects of JM.
      It really got me down because one of my goals that I was working toward was being able to run at least a 5k once I got better. The geneticist told me that I would not even be able to do that because it could send my system into shock and cause problems with my liver, which could be fatal  At this point I could have just said that this was the final straw and that there is no use to even trying anymore. I couldn't do that though. I have come so far since this time last year. Its hard to think that when I was first diagnosed about a year ago I couldn't sit up in bed or put my own hair up in a ponytail . So just recently I posted a status on my Facebook that said "Determination. It's what runs me. I'm going to walk across the stage for graduation. I will not give up and I will keep pushing everyday to get stronger." These words have been running through my mind EVERY SINGLE DAY since I was diagnosed with a second disease.
      No matter what is to come at me in life I will always keep pushing on. Being sick has taught me many things, but one thing that always remains in my mind is that life is too short to give up. Life is too short to be unhappy. Life is to short to not give it your all. So my "word of the week" is going to be Determination because I am determined that this is not all that I am. I may not be able to run a whole 5k but I will complete it. I will get to the finish line when it is my time to. Nothing can stop me.
      I think that as humans we are all somewhat goal orientated in some way. My goal is to walk across the stage for graduation and I know that I will. I will push everyday to get to that point. When I'm standing on that stage it might seem like a long way to the other side but no matter what  I will walk it. I have work to hard and too long to just let someone push me across the stage in a wheelchair I challenge you all to try something that you might not have done before. Push yourself to be a better person. Forgive. Lose weight. Try a new food. Whatever it may be do it, and do it to the best of your ability.
Love,
Callie

P.S. I would love to get some feed back from my readers! I have been thinking about doing a post maybe once a week on some health and fitness tools since I have been able to get so healthy even though I am on so many different meds, including steroids  I think that if I can do it with TWO muscle diseases that you can as well. I have faith in you all. SO PLEASE give me some feedback on what YOU would like to see in some of my blogs or maybe simply a comment on what you think of my past post! Thank you all once again for being such faithful followers! I love each and everyone of you. It is support that helps push me along to be the best that I can be. Yep! Thats right! Go ahead and give yourself a pat on the back!
     I would also like to mention that last weekend my boyfriend Connor and my sisters boyfriend Sean were both baptised and confirmed in the Catholic Religion last weekend. I also confirmed as well. It was such a beautiful sight to see how the holy spirit was working inside of them and is still filling them with so much love and faith. So I ask you all tonight that if you pray to please pray for them that God will continue to work in them. Please pray that God continues to heal me and bring me as much happiness as he has been bringing me. I am so lucky to share my happiness, love and now my faith with Connor the one who I love with all my heart. Thank you God for bringing me such blessings throughout my life!

If you would like to learn more about the Cure JM Foundation please visit www.curejm.org
If you would like to learn more about MADD please visit http://www.rightdiagnosis.com/medical/madd.htm

                                    Connor and Sean with their sponsors after they were baptised.

                               Connor and I after we were confirmed and he recieved his first communion!

                                                           My dad and I after church.

Me and my Mimi who was also my sponsor.

                                                  Just a great picture of my Aunt and I!

Family picture that includes my two sisters, grandparents, mom and dad and the boyfriends! All thats missing                                            is my nana.

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

Nobody Knows Where I've Been

      So im just going to jump right into this weeks blog. I have been feeling pretty down in the dumps lately. You see I am a senior in high school and my graduation is coming up. Also it has almost been 14 months that I have been sick and almost a year that I have been diagnosed. Its coming down pretty hard on me. I feel like I have lots friends because they have found someone else who can "go out" with and "have fun" with and I also feel like my senior year of high school has just flown by so quickly. 

     This is the time of year where most seniors would be saying how they "Should have/could have" and it hit me that I was one of the few that was saying "I wish I could have". It has not been easy to have a disease. I feel like sometimes people just can not wrap their head around the fact that I am sick or even what my disease is. They all say they get it but somehow I can tell that they don't.

      My disease is invisible. Most kids that have JM are not in wheelchairs and do not have assistive walking devices so people treat them as if they have noting wrong with them. Most people do not understand what it is like to be in a body that attacks itself. They sit there and judge the person from what they see on the outside and that just is not fair! I know, I know, life is not fair. I get that, but why do we have pay for it? 

      I guess my situation is a little different though, people can physically see that I am in a wheelchair at school and therefore they should understand a little better right? Well wrong. They don't. Sometimes its worse. They sit in their desk acting like you do not even exists  Like your illness is contagious or something. Like if they are nice to you that the WHOLE WORLD will turn against them and make fun of them. They go around you to get to a door before you do and then they do not even hold it open for you. Didn't your momma ever teach you manners kid??????????

      Sorry about that little rant. It is just that sometimes I get so upset with people that I just need to let it out or I might just explode. The thing that I know most people with an illness can relate to is the fact that people can be "to optimistic". And when I say I do not mean that I do not like when people care but sometimes you just have to take it for what it is and say that you believe them. That you believe that they are going through pain, struggles and so so much more. The comment that gets me the most is when they say "it could be worse" or "well you could have cancer"....I mean come on people. Where do you get this kind of thinking from?? Yea, I know. I could have cancer but you want to know something, I take some of the same medications that they do. Steroids, chemo shots, and so much more.

      Think about what you are going to say before leaves your mouth. Before you utter those words "I know how you feel" because let me tell you something, you don't. Heck I don't even know what or how Im feeling sometimes if that makes any sense. All I can say is that we should all live by the saying "Do onto others as you would have done onto you." 

      We all have our mountains to climb and our demons to face in life but in the end it does not matter how cool you were in high school, how many awards you won, or how many parties you went to, all that matters is that you were kind and caring and understanding when someone is down. Nobody knows where I've been but I sure do appreciate when there is a friend there to listen. So just remember that you have an impact on every person you meet and that there is no greater thing in the world then kindness, love, and listening.

If you would like to learn more about my disease please visit www.curejm.org

When life gives you lemons

We have all at one time or another heard the saying "When life gives you lemons make lemonade." I never really thought about how true it was until I became ill. I knew that I couldn't give up but how was I supposed to turn my "horrible" situation into something good? It took lots of time and help to figure that one out.
The first few times that I had to go into the hospital for my treatment I was miserable. The infusion takes 24 hours and I am not allowed to leave the floor. After about the third treatment I go to thinking. How was I going to turn this sour thing into something sweet? Well add sugar of course!
In my case kindness was sugar. I started bringing little things that I could share with the people around me. First I brought my guitar and I had the opportunity to play it for two very kind Navy Sailors. Then I started getting to know each of the nurses. I have, over time, met some pretty amazing people at the hospital.
Right before Christmas I went in for a treatment and I got to see the Mandiville High School choir sing Christmas carols. That evening I colored with a little girl who had been in the hospital for quite some time and I even had the chance to meet another young girl who has JM just like me! And this past time when I went to the hospital I brought Mardi Gras beads for some of the kids on my floor! I got to meet the coolest kid! His name is Blake and I call him my real life Iron Man! He was in to get his pacemaker changed and when I say that this kid is cool I mean it! He is so cool he even got to crown G.W. Baily as the King of Baccus!
I also had the chance to write an article for a magazine called Ig Living. Their pacient rep. contacted my through Facebook because she had read this blog and said she was so inspired by me! Well would you look at that. Someone inspired by little ol' me? Well let's just say I was so flattered and honored to write and article for this wonderful magazine. My article was posted in this months addition and I would have never been able to do that if it had not been for my illness.
All these things are just a few examples of how I am turning my lemon into lemonade. There are so many things in life that I hope to accomplish and I know that this disease is helping me become a stronger and more confident person. I am, day by day, figuring our how to turn my lemon in to lemonade. So I leave you with one question, how are you going to turn your lemon into lemonaid?
Love, Callie

If you would like to know more about my disease please visit www.curejm.com

The Trials of Life

Hello everyone,

      My last blog came from how I had been feeling lately. Sometime I wonder how people can be so cruel and mean. It hurts my heart to see people being so mean to each other but I think I covered that subject pretty well in my last blog. This blog Im going to talk about my current struggles.

      So when I was diagnosed with JDM the plan was that I would be in remission within 4 years. Hopefully. But so far that hasn't happened. The treatment plan was to begin with 60mg of prednisone, along with many other meds that included a 1cc shot of chemo a week and a treatment that I got every 4 weeks called IVIG that I was only supposed to get 8 times. Everything was going great until the first time we tried to push the ivig back to 6 weeks on my 6th treatment. When I hit four weeks I could feel my body getting weaker. The fifth week I got very sick and started throwing up. I knew I was not going to be able to make it to the six weeks. I tried my best but my mom had to bring me to Children's Hospital at 1 in the morning. It was weird though. All my levels had stayed pretty much the same. 

      Doctor Brown told me that we would go back to 4 weeks and that if I felt like I could keep going and make it to six weeks that we could change the appointment. Well I tried but my body just was not doing what I need it to do.I  have always pushed myself so hard to get stronger and to get better but my body just was not ready I guess. Well when I went in for my 12th IVIG Doc. Brown suggested that we talk with the Geneticist Doctor Marble once again about the VL-CAD stuff that he had talked about when I was first diagnosed and she also said that she would send my case info to a Doctor at George Washington University who specialized in JDM.

      And that is what Im dealing with right now.We met with Doctor Marble who is the best of the best when it comes to genetics. He talked to us in detail about all the different possiabilitys that it could be and some of the stuff I have a hard time even saying! So he took blood. When the results came back he said that it was very strange because the "profile" was different from a year ago.So he asked us to do a urinalysis and now we are just waiting on the results. And as for the Doctor at GWU she said just to keep her updated. Go figures....

      Now I am just waiting. I was supposed to go in for my IVIG on the 2nd but Doctor Brown said she wants me to wait because she needs me to weaker when I come in next time, which is on Valentines Day. She is bringing in a neurologist to look at me and then we will start the IVIG after that. I have had a rough couple of nights. From terrible head aches and leg cramps, to weakness, and passing out the other night I can tell it is going to be a rough couple of days until I go into the hospital. I just know that no matter what I have to keep my chin up. God only gives us what we can handle. With my family, friends, and my loving boyfriend by my side I know that I can make it through anything. 

      I can only think on the bright side because I am to young and I have to much life left to live to think any other way. Each time I hurt now means that I will just live that much easier when I grow old. So for now all I can do is pray and I ask that each one of you just pray for me when you can. Thank you and God bless.

Love,

Callie

For more info about JM please visit www.curejm.org 

Kindness Can Change Their Day

Hello once again followers,
      As the school year has gone on I have hit many road blocks. From worrying about how I'm going to get all the work completed to being upset that I can't do most of the things that seniors get to do. It's hard but I seem to get it all done some how. I just have to take time to breath sometimes and look around me to realize that I can do it.
      You see in life we all get so cought up in our own issues in life that we do not get to see how lucky that we are. We have to stop living each day in regret, sorrow, and self pitty. There is a time and place for us to grieve and be upset about our downfalls and troubles in life but then we have to get up and keep pushing on. When we let go of our selfish thoughts and feelings and just do for others we can get so much in return and it doesn't even have to be something huge. It can be as little as a smile, hug, or handshake.
      I know it doesn't seem like much to you but let me tell ya, when you smile at someone you can change their day. This was proven to me on the day that I went to audition for my district honor choir. There was some issues with getting me to the audition room because there was not an elevator to bring me to the floor where the auditions. I was so upset. I started crying. I then had one of the choir teachers from a local school come up to me and ask me if she could pary over me and we did. She didn't give me a million dollars or anything huge she just gave me her time and her support. After that I auditioned and got first place in our district.
    It was that small act of kindness that changed my whole mood for that day and proved to me what a smile and a few kind words can do. There have been many days when I wasn't feeling the best that just a few words changed my whole day. So I challenge you to do something kind for someone you don't know or someone who you can see needs your help. You never know how your few words can change them.
Love,
Callie

To find out more about JM please visit www.curejm.org