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