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
Thursday, January 31, 2013
Thursday, January 24, 2013
Be you!
Dear Readers,
I know it has been a while since I have posted a blog. I have been pretty busy lately. From doctors appointments to choir practice and so much more I have really not had much time to breath! Haha! I try to stay busy. Thats how I keep from getting upset about having JDM I guess. I just try to keep life as normal as possible.
For the couple months after I was diagnosed with JDM I was mad and upset, but once I got over that and realized that I had JM so that I could be the voice for all the little children who couldn't tell their story I felt much better. One thing that had really been weighing on my mind though is how my friends seemed to be coming to see my less often as the months went on. I always had my family and my boyfriend there but my "friends" seemed to just disappear. I did have a few that came to see me as often as they could but it always seemed different.
The summer of 2012 just sucked. Like really. You see the disease is made more active by the sun so I couldn't do most of the things I used to enjoy doing such as riding my boat and fishing. I soon found a way to distract myself from the boredom though. I started cooking more. And not just anything I started cooking healthy. The doctors told me over and over again that weight gain was expected with the type of medicine I was on but I, being the competitive person I am, said that I was not going to gain weight. I was going to lose it. So that is what I did and I have lost 30 pounds since.
So summer passed and it was time for school. I was so afraid of going back. I had not been at the school since January of 2012. I actually cried because I was just so over whelmed. I am a normal person, Im not some super human who is just happy all the time and I will be the first one to say that. I just choose to rejoice in what I was given instead of dwell in the fact that I have a chronic illness.When I got into school thought I realized that I was freaking out for nothing.
On the first day of school I could feel everyone starring at me. Some people walked up to me and ask me where I had been. Some told me they thought I had moved but the majority of the people just ignored me. Then there were the people who came up to me and put on this big show, im not sure who for, telling me how much they missed me and how bad they felt for me and the the next day they would not even give me the time of day! It was a lonely feeling though. And I realized that I had become very quiet. Before I had gotten sick I was very vocal and I always tried to talk to people but now I kept to myself. I was afraid I guess of what people thought of me.
After a few months I kind of got back into the grove of things with the help of my closest and bestest friend Taylor Helmstetter. She and I sang together in a group call the Toula Girls before I got sick but like I was saying It did take a while for me to get used to school again. It didnt help that I can only attend school on the days that I'm feeling good. But anyways I started talking with people and letting them know that I was the same Callie that I used to be. That I wasn't contagious or anything like that. I was still Callie. I still loved music, and talking, and all the things I used to love. I just do some things a little different. JDM won't stop me though from doing what I love to do. Nothing should ever stop anyone from doing what they love. Never change who you are because you have a disability or sickness. Be who you want to be and do what you want to do.
Love ALWAYS,
Callie
To learn more about JM please visit www.curejm.org
I know it has been a while since I have posted a blog. I have been pretty busy lately. From doctors appointments to choir practice and so much more I have really not had much time to breath! Haha! I try to stay busy. Thats how I keep from getting upset about having JDM I guess. I just try to keep life as normal as possible.
For the couple months after I was diagnosed with JDM I was mad and upset, but once I got over that and realized that I had JM so that I could be the voice for all the little children who couldn't tell their story I felt much better. One thing that had really been weighing on my mind though is how my friends seemed to be coming to see my less often as the months went on. I always had my family and my boyfriend there but my "friends" seemed to just disappear. I did have a few that came to see me as often as they could but it always seemed different.
The summer of 2012 just sucked. Like really. You see the disease is made more active by the sun so I couldn't do most of the things I used to enjoy doing such as riding my boat and fishing. I soon found a way to distract myself from the boredom though. I started cooking more. And not just anything I started cooking healthy. The doctors told me over and over again that weight gain was expected with the type of medicine I was on but I, being the competitive person I am, said that I was not going to gain weight. I was going to lose it. So that is what I did and I have lost 30 pounds since.
So summer passed and it was time for school. I was so afraid of going back. I had not been at the school since January of 2012. I actually cried because I was just so over whelmed. I am a normal person, Im not some super human who is just happy all the time and I will be the first one to say that. I just choose to rejoice in what I was given instead of dwell in the fact that I have a chronic illness.When I got into school thought I realized that I was freaking out for nothing.
On the first day of school I could feel everyone starring at me. Some people walked up to me and ask me where I had been. Some told me they thought I had moved but the majority of the people just ignored me. Then there were the people who came up to me and put on this big show, im not sure who for, telling me how much they missed me and how bad they felt for me and the the next day they would not even give me the time of day! It was a lonely feeling though. And I realized that I had become very quiet. Before I had gotten sick I was very vocal and I always tried to talk to people but now I kept to myself. I was afraid I guess of what people thought of me.
After a few months I kind of got back into the grove of things with the help of my closest and bestest friend Taylor Helmstetter. She and I sang together in a group call the Toula Girls before I got sick but like I was saying It did take a while for me to get used to school again. It didnt help that I can only attend school on the days that I'm feeling good. But anyways I started talking with people and letting them know that I was the same Callie that I used to be. That I wasn't contagious or anything like that. I was still Callie. I still loved music, and talking, and all the things I used to love. I just do some things a little different. JDM won't stop me though from doing what I love to do. Nothing should ever stop anyone from doing what they love. Never change who you are because you have a disability or sickness. Be who you want to be and do what you want to do.
Love ALWAYS,
Callie
To learn more about JM please visit www.curejm.org
Monday, January 14, 2013
Hello again dear followers,
You all have no clue how honored I am to be able to share my story with you all. Having JM has given me so many opportunities that I would have never been able to have if I wouldn't have gotten sick. For starters I want to thank the Cure JM community for everything! The website they have is so informative and has helped my family and I connect with so many other JM families.
Knowing that there were other families out there going through the same thing mine was was somewhat comforting. Like I mentioned in my last blog I found that this disease was neither a punishment or a burden, but instead it gave me purpose. I knew that I had to fight this disease and that I could never give up no matter what. I knew that I had to push myself and keep even if it seemed impossible. So the first step for me was getting back out into the public as much as I could.
My first opportunity was my boyfriends Senior Prom and boy was I nervous. Prom is a very special night for many, especially a 17 year old girl but I was FREAKING OUT because I could barley sit up in bed much less go out to dinner and then to a dance, or so I thought. My mom went back and fourth about 6 times trying to find the PERFECT dress for me to wear and let me tell you, she did a great job! I had lost about 50 pounds since the last time I had to wear anything other than pajamas so it was tricky trying to find out what size I was. Once we found the dress I was still not sure if I wanted to go but Connor, my very loving and caring boyfriend was going to make sure that I went and had a great time. It was his senior prom after all.
Well we went out and had dinner and when we got to the dance and I saw all of my friends I was so afraid. What were they all going to think of me. What were they going to say. I could not go to school at the time so many of these people did not even know anything was wrong with me. Well I was so wrong to be afraid because when we got there everyone just told me how great it was that I was there and how much they all missed me. I had a great night and that was the night that I realized that I was going to be okay and that there were many great days ahead of me.
My family always does there best to help me be as normal as possible but sometimes it is hard. I will be the first one to tell you that none of this has been easy but my family being there for me has been a big part of my recovery. I wouldn't be able to do anything if it weren't for them. When they say it takes a village to raise a child they aren't lying. I guess what Im trying to say is that I do not want people to think that I have gotten to where I'm at today all on my own. At every obstacle my family and friends have been there for me and that has been a blessing all on its own.
My life, with its up and downs, has been a great one so far and I know that I always have family and friends to fall back on. If you take a look into your life do you find that you thank the ones who love and care for you enough? And Im not just talking to younger people either. We all have someone in our lives who is there to help us, even if they show it in a strange way. So take a moment to reflect on you life and the people in it. Do something special and do not expect anything in return. Tell them you love them and show them how much you care. You never know how much it can mean to them.
God bless,
Callie
You all have no clue how honored I am to be able to share my story with you all. Having JM has given me so many opportunities that I would have never been able to have if I wouldn't have gotten sick. For starters I want to thank the Cure JM community for everything! The website they have is so informative and has helped my family and I connect with so many other JM families.
Knowing that there were other families out there going through the same thing mine was was somewhat comforting. Like I mentioned in my last blog I found that this disease was neither a punishment or a burden, but instead it gave me purpose. I knew that I had to fight this disease and that I could never give up no matter what. I knew that I had to push myself and keep even if it seemed impossible. So the first step for me was getting back out into the public as much as I could.
My first opportunity was my boyfriends Senior Prom and boy was I nervous. Prom is a very special night for many, especially a 17 year old girl but I was FREAKING OUT because I could barley sit up in bed much less go out to dinner and then to a dance, or so I thought. My mom went back and fourth about 6 times trying to find the PERFECT dress for me to wear and let me tell you, she did a great job! I had lost about 50 pounds since the last time I had to wear anything other than pajamas so it was tricky trying to find out what size I was. Once we found the dress I was still not sure if I wanted to go but Connor, my very loving and caring boyfriend was going to make sure that I went and had a great time. It was his senior prom after all.
Well we went out and had dinner and when we got to the dance and I saw all of my friends I was so afraid. What were they all going to think of me. What were they going to say. I could not go to school at the time so many of these people did not even know anything was wrong with me. Well I was so wrong to be afraid because when we got there everyone just told me how great it was that I was there and how much they all missed me. I had a great night and that was the night that I realized that I was going to be okay and that there were many great days ahead of me.
My family always does there best to help me be as normal as possible but sometimes it is hard. I will be the first one to tell you that none of this has been easy but my family being there for me has been a big part of my recovery. I wouldn't be able to do anything if it weren't for them. When they say it takes a village to raise a child they aren't lying. I guess what Im trying to say is that I do not want people to think that I have gotten to where I'm at today all on my own. At every obstacle my family and friends have been there for me and that has been a blessing all on its own.
My life, with its up and downs, has been a great one so far and I know that I always have family and friends to fall back on. If you take a look into your life do you find that you thank the ones who love and care for you enough? And Im not just talking to younger people either. We all have someone in our lives who is there to help us, even if they show it in a strange way. So take a moment to reflect on you life and the people in it. Do something special and do not expect anything in return. Tell them you love them and show them how much you care. You never know how much it can mean to them.
God bless,
Callie
Tuesday, January 8, 2013
In the beginning
Hello again,
Thank you to everyone who has been sharing my story. The past year has been quite difficult on my family and I and to have the support of all you kind people. My last blog was just a small look into my life with JM. The following blogs will describe further into my everyday life with JM. The ups the downs and the explainable.
The days after I returned from the hospital seemed to go by very slow. I was still in so much pain from the muscle cramps and no to mention the 3 inch cut in my leg from the muscle biopsy. I couldn't sit up in my bed, go to the rest room, or even feed myself without assistance. Being a very independent and stubborn 17 year old this made the days miserable. I went from walking around and singing in my district honor choir 3 weeks earlier to being stuck in my bed almost 24/7. THANK GOD for my Mimi, Karen, who took care of me while my mom had to work.
My grandmother is like superwoman and without her I think I might have just gone insane sitting in that room all by myself. She would lift me out of my bed and assist me to the potty chair that we had to put in my room because I was not able to go to the other one. She would also bathe me and attempt to brush my hair. I say attempt because there was a knot the size of a softball in my hair because I had laid on it for so long. Anyways the point is that I am so thankful for my grandma.
The month after I got back from the hospital and the doctors were going back and forth trying to figure out what I had was very rough on me. I just wanted to know what was wrong with me. Why couldn't anyone tell me that? Why couldn't I get a straight answer? There where a million questions that I had running through my head. The worst part was the withdrawal. You see when I was in the hospital and the couple days after I had returned from the hospital I was on very high doses of prednisone which is a steroid used in the treatment of JM. When the doctors called me and told me to stop all medicines my body went through withdrawals. I was miserable. Shakes, cold sweats, insomnia you name it I had it. It was crazy. Good thing I had my other superhero, my mom, by my side each and every night to help me through it.
When I was this sick I felt like I must have done something wrong to have this happen to me. Like I could have done something different in my life so that I wouldn't have been punished by God. It took me a while with lots of prayer to understand that this disease is not a punishment, it is a purpose. Having JM has given me and is still giving me the opportunity every day to help someone. It has taught me to love, give, and never take for granted the small things and the people in our lives.
I can not wait to share my life with you all. My life may not be that interesting but I know that with each person that reads this blog we come one step closer to finding a cure for JM.
God Bless,
Callie
Thank you to everyone who has been sharing my story. The past year has been quite difficult on my family and I and to have the support of all you kind people. My last blog was just a small look into my life with JM. The following blogs will describe further into my everyday life with JM. The ups the downs and the explainable.
The days after I returned from the hospital seemed to go by very slow. I was still in so much pain from the muscle cramps and no to mention the 3 inch cut in my leg from the muscle biopsy. I couldn't sit up in my bed, go to the rest room, or even feed myself without assistance. Being a very independent and stubborn 17 year old this made the days miserable. I went from walking around and singing in my district honor choir 3 weeks earlier to being stuck in my bed almost 24/7. THANK GOD for my Mimi, Karen, who took care of me while my mom had to work.
My grandmother is like superwoman and without her I think I might have just gone insane sitting in that room all by myself. She would lift me out of my bed and assist me to the potty chair that we had to put in my room because I was not able to go to the other one. She would also bathe me and attempt to brush my hair. I say attempt because there was a knot the size of a softball in my hair because I had laid on it for so long. Anyways the point is that I am so thankful for my grandma.
The month after I got back from the hospital and the doctors were going back and forth trying to figure out what I had was very rough on me. I just wanted to know what was wrong with me. Why couldn't anyone tell me that? Why couldn't I get a straight answer? There where a million questions that I had running through my head. The worst part was the withdrawal. You see when I was in the hospital and the couple days after I had returned from the hospital I was on very high doses of prednisone which is a steroid used in the treatment of JM. When the doctors called me and told me to stop all medicines my body went through withdrawals. I was miserable. Shakes, cold sweats, insomnia you name it I had it. It was crazy. Good thing I had my other superhero, my mom, by my side each and every night to help me through it.
When I was this sick I felt like I must have done something wrong to have this happen to me. Like I could have done something different in my life so that I wouldn't have been punished by God. It took me a while with lots of prayer to understand that this disease is not a punishment, it is a purpose. Having JM has given me and is still giving me the opportunity every day to help someone. It has taught me to love, give, and never take for granted the small things and the people in our lives.
I can not wait to share my life with you all. My life may not be that interesting but I know that with each person that reads this blog we come one step closer to finding a cure for JM.
God Bless,
Callie
To find more info please visit www.curejm.org
Sunday, January 6, 2013
This is where it all begins.
Hello everyone,
My name is Callie and this blog is all about my journey through life with a rare chronic illness called Juvenile Dermatomyositis, or JDM for short. Juvenile Dermatomyositis is an autoimmune disease that causes muscle weakness, fatigue, and rashes along with multiple other complications. The treatment varies from patient and most children see remission, some on the other hand have a difficult time fighting this disease.
Growing up I was always the healthy child. I was active and I loved to play sports. My parents often noticed and joked with me about not being able to run as fast as others my age or be able to play as long as they did. As I grew up I also developed terrible "growing pains" in my legs. All of these things we just thought were normal. That was until January 6th of 2012. Me and my two sisters woke up very ill. Not being able to keep anything down. The only difference is that they got over the little bug and I never did. My mother took me to doctor after doctor to find out what was wrong. Most said it was mono but my moms motherly instinct told her otherwise. She wasn't going to stop until we could find someone who could tell us what was definitely wrong with me.
After two months and no answers my mom took me to children's hospital. When I arrived at the emergency room on March the 6th I was severely dehydrated and malnourished because I had not been able to keep anything down for those two months. Right away I was assigned to the gastro team. Little did anyone that my issue had nothing to do with my stomach and everything to do with my muscles and autoimmune system. After a number of test the decided it was best to admit me into the hospital and good thing they did.
The next day that I woke up and they came to take blood work I knew that it was going to be a long day. I felt the worse I had felt since I had gotten sick and I didn't know why. Well when the blood work came back showing that my CPK levels were through the roof the doctors started to realize that there was something deeper going on. So they brought in a rheumatologist and man am I lucky they did that! In walked Dr. Brown, the best rheumatologist in the south! She was very concerned that I might have this disease called JM and she said that we would do an MRI before we did a muscle biopsy to make sure we were taking a sample from the right area,but of course with my luck the MRI machine was down and the part would arrive after the procedure was down and over with. No need to fret though because Doc Brown had all the evidence she needed to prove that I had JM. Well at least that's what we thought.
Only a couple days after being sent home and starting intense medications to help calm my immune system we get a phone call saying to stop all medications because they think I had something called a VL-CAD deficiency. So we did as we were told. We then proceeded, for a month after I was released from the hospital, to make trip after trip to children's hospital in search of answers. It was almost 6 weeks that I had been off the medications and everyone could see that I was coming down from the little boost and I was coming down quick. So Dr. Brown acted quickly and started me back on all medications. She was right to do so because my body has been responding great to the medications.
As the blogs go on I will dive into further detail about my journey through life with JDM. There have been many ups and downs. I will be the first to admit that it hasn't been easy on anyone in my family but I will say that I know only something great will come from this. You will get to read about I no longer take for granted the simple things and how I have helped others. You will also get the opportunity to help me help others. And most importantly we will grow together. Just because you might not be going through the exact thing I know that we all have mountains to climb in life and we all need someone there who can help us through. It might not always be easy but it is always worth it.
You can learn more about my disease at www.curejm.org
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