Recovery!
November 15th-
My first week of recovery was in Florida but now I am back home and ready to feel better!
November 16th-
This was my first full day at home and it felt so good to sleep in my own bed after almost 3 weeks in Florida. My Godmother Kristie came over and brought me my favorite Chicken Sonama Stew from Bread Company. She asked how I was but didn't want me to talk. I wasn't feeling so good. I had just taken a shower and was exhausted and in pain. Yesterday and today I have gotten in the habit of slightly opening my mouth when I talk so people could understand me. I figured this was allowed since the rubber bands allowed me to stretch a little bit. My mom didn't think so and was going to call Dr. Piper on Monday.
November 19th-
This was my first day back at school and I wasn't sure how it would go. I was excited but nervous because I didn't know how people would react to the big splint in my mouth and the way I talked. On top of of that I had some major catching up to do. The day went okay but I was exhausted by the end of the day. Luckily I have awesome librarians that let me use their lunch room for my breaks. I don't know what I would have done without this, because the 15 minute breaks are hard enough without having to do them in a public bathroom and run back to get a table and scarf down my food. My 6th hour I have library aid and I layed down on the couch to heat my face and fell asleep and missed the bell for 7th hour and missed half of the class. I was mad that I fell asleep and couldn't wake up but I guess I needed the little nap. After school I went to dance practice, but wasn't allowed to dance. I sat and watched which was killing me because I wanted so badly to dance again. When I got home I'm sure I crashed because I was exhausted.
November 25th-
It is so incredibly hard to go to dance practice and just sit and watch. I don;t care how much pain I'm in, I want to DANCE! I'm in so much pain sitting at my desk at school or on a car ride, dancing isn't any worse. It breaks my heart to sit and watch and not be able to do anything. I guess sometimes you don't realize how much you love something until it is taken from you.
November 29th-
30 minute breaks 5 times a day...Halleluiah!!!
These felt so good compared to 15 minutes. I could actually enjoy my food a little bit, instead of choking it down.
November 30th-
We had an assembly at our school and the dance team always preforms. This was going to be my last and I was more than upset not to participate. I gave the girls a pep talk before they went on and promised I was learning the dances and would be ready to dance after Lindberg competition. No matter what anyone said about it, I'd waited more than I could bare. While I sat in front watching the girls preform, smiling at them getting them to smile and have fun, inside I was struggling to hold back tears. It might sound silly to some but dancing is my life and it was killing me to not be out on that floor. Later my principal told me that it broke his heart watching me not dance because he could tell that I wanted to more than anything. For now all I can do is wait patiently, easier said than done.
December 3rd-
Today we had our first dance competition and I went along with the girls to cheer them on, because I still wasn't dancing. It was hard to watch them but I also had my plan of dancing as soon as this competition was over and no one was stopping me. So that lifted my spirits some, even though I couldn't dance.
December 20th-
45 minute breaks 5 times a day!
I am backtracking a little since I didn't write about my recovery for the first 3 months because I was so busy. I found this journal entry and I can remember this day all too clear.
"Today was rough. I woke up with an awful headache and figured it would go away with my pain medicines after breakfast. I was wrong. It got worse and I felt like it was turning into a migraine. It's so frustrating that I still after 2 months have this pain. My pain level was a 7 or 8 all morning and afternoon, I couldn't even concentrate on school. During 3rd hour I layed in the library lunch room and heated my jaw and slept for 10 minutes before lunch. I decided to push through and go to 4th and 5th hour because I've already missed so much school. After 5th hour I left to go take a nap. I didn't sleep well but my pain was down to a 5-6 so I ate and went to dance practice. Dance was rough because I got kicked in the back of the neck pretty hard and made my headache and neck pain even worse. Then we had a basketball game to preform at, and by 8 o'clock I was exhausted. I was supposed to have my recital dance class at my studio but I didn't go. I couldn't it take anymore. I'm exhausted and wishing for the weekend and it's only Monday. I hate that. I feel like I am wishing my senior year away. I'm leaving in 7 months and that scares me to death."
"Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous hand." Isaiah 41:10
"How awesome is that?"
2 Months-January 7th
January 10th- 1 hour 5 times a day
January 31th- 1 hour and 15 minutes 5 times a day
February 1st-
Today I left with my dance team to Orlando Florida for our national dance team competition. It was a long day but I am so excited to compete tomorrow!
February 2nd-
Today we competed our kick routine to all that jazz we had some mistakes but overall we did pretty good considering one girl on our team had her shoe fly off and still completed the whole dance including a long series of second turns. We didn't make it into the semi-finals and were all disappointed. on the other hand we had today and tomorrow to explore Disney world!
February 3rd-
Today I spent the day sleeping a little because I was exhausted and then I hung back and relaxed by the pool with my sister and a couple of our friends. Tonight first we went to Downtown Disney and ate dinner and shopped. Then Disney shut down the park for the dance teams and we had a blast riding the rides together especially tower of terror.
February 4th-
Today everyone flew back home except for me and my mom. We rented a car and headed to St. Petersburg for my 3 month appointment. As soon as we arrived at our hotel I crashed and slept for quite awhile. I was somewhat nervous about my appointment tomorrow and hoped everything would go well.
February 5th- 3 month appointment with Dr. Piper 8 a.m.
Today was my appointment with Dr. Piper. He told us that my fat grafts looked good and that I had possible bone growth, both good news! However I am still in the same amount of pain as always and struggling everyday, trying to get better. He noticed that my first cervical vertebra, the atlas, was both tilted and rotated. This isn't his expertise and suggested we see someone. He also suggested that I might have Ehlers-Danlos disease which is a connective tissue disorder. Most of my symptoms match this disease and he thought it would be worth our time to get checked. In a way this was a good appointment, in theory I was doing good, but not really. I guess this means more doctor appointments and more searching. I am willing to do whatever at this point. I just want to heal, this is supposed to be my "recovery" but that's kind of a joke when I am no better than before...but for now I am ready to go home to my family and see Grant.
3 Month mark!!!- February 7th
February 17th-
Today I turned 18, I had church and Sunday school then a 2 hour dance practice then I was off to my Nana and Papa's house for lunch, cake and presents. I loved spending time with my grandparents and my family, but I couldn't shake how much pain I was in today. I ignored it and kept busy not thinking about it, but that only lasts so long. When we left and went back to my house to hang out with Grant I broke down. Laying there I was so angry. Why today why cant I be a normal 18 year old and enjoy this day. I told Grant that I couldn't do this anymore, that I couldn't take it. I was in so much pain that tears were flowing down my face. He tried to comfort me and told me that I could, I told him that I couldn't and didn't want to. I just wanted to feel better. I was exhausted with pain, irritated that I was ruining my birthday by being upset and snapping at Grant like always when I'm in pain. He didn't get mad just took it and took care of me. Could I ask for a better best friend? He went and got my medicines, ice for my neck and heat for my face and just layed there with me until I was asleep. He knows that the only time I'm not in pain is when I sleep. I was upset that I couldn't have stayed up and talked to him but we always have tomorrow right?
4 Month mark!!!- March 7th
March 15th-
Today I am a little frustrated. I am sitting in class researching Ehlers-Danlos disease and misaligned atlas bones. I feel as though I need to find my own answers and treatment because no one else is. Doctors tell me there is nothing wrong which I feel like is just a reason for them to lazy and not look deeper into my obvious issues. Dr. Piper knows somethings wrong but doesn't know how to help. There are so many different options to address my neck, but how am I supposed to know if these treatments are things that actually work or just scams? I wish I could find a doctor that would help me and "fix me"! I am exhausted and angry and just want to be ME again. I am not me when I have to constantly ignore pain, I snap at people I love, I get angry and upset, I'm not me. I want Michaela back.
My first week of recovery was in Florida but now I am back home and ready to feel better!
November 16th-
This was my first full day at home and it felt so good to sleep in my own bed after almost 3 weeks in Florida. My Godmother Kristie came over and brought me my favorite Chicken Sonama Stew from Bread Company. She asked how I was but didn't want me to talk. I wasn't feeling so good. I had just taken a shower and was exhausted and in pain. Yesterday and today I have gotten in the habit of slightly opening my mouth when I talk so people could understand me. I figured this was allowed since the rubber bands allowed me to stretch a little bit. My mom didn't think so and was going to call Dr. Piper on Monday.
November 19th-
This was my first day back at school and I wasn't sure how it would go. I was excited but nervous because I didn't know how people would react to the big splint in my mouth and the way I talked. On top of of that I had some major catching up to do. The day went okay but I was exhausted by the end of the day. Luckily I have awesome librarians that let me use their lunch room for my breaks. I don't know what I would have done without this, because the 15 minute breaks are hard enough without having to do them in a public bathroom and run back to get a table and scarf down my food. My 6th hour I have library aid and I layed down on the couch to heat my face and fell asleep and missed the bell for 7th hour and missed half of the class. I was mad that I fell asleep and couldn't wake up but I guess I needed the little nap. After school I went to dance practice, but wasn't allowed to dance. I sat and watched which was killing me because I wanted so badly to dance again. When I got home I'm sure I crashed because I was exhausted.
It is so incredibly hard to go to dance practice and just sit and watch. I don;t care how much pain I'm in, I want to DANCE! I'm in so much pain sitting at my desk at school or on a car ride, dancing isn't any worse. It breaks my heart to sit and watch and not be able to do anything. I guess sometimes you don't realize how much you love something until it is taken from you.
30 minute breaks 5 times a day...Halleluiah!!!
These felt so good compared to 15 minutes. I could actually enjoy my food a little bit, instead of choking it down.
November 30th-
We had an assembly at our school and the dance team always preforms. This was going to be my last and I was more than upset not to participate. I gave the girls a pep talk before they went on and promised I was learning the dances and would be ready to dance after Lindberg competition. No matter what anyone said about it, I'd waited more than I could bare. While I sat in front watching the girls preform, smiling at them getting them to smile and have fun, inside I was struggling to hold back tears. It might sound silly to some but dancing is my life and it was killing me to not be out on that floor. Later my principal told me that it broke his heart watching me not dance because he could tell that I wanted to more than anything. For now all I can do is wait patiently, easier said than done.
1 Month Mark- December 7th
December 3rd-
Today we had our first dance competition and I went along with the girls to cheer them on, because I still wasn't dancing. It was hard to watch them but I also had my plan of dancing as soon as this competition was over and no one was stopping me. So that lifted my spirits some, even though I couldn't dance.
December 20th-
45 minute breaks 5 times a day!
I am backtracking a little since I didn't write about my recovery for the first 3 months because I was so busy. I found this journal entry and I can remember this day all too clear.
"Today was rough. I woke up with an awful headache and figured it would go away with my pain medicines after breakfast. I was wrong. It got worse and I felt like it was turning into a migraine. It's so frustrating that I still after 2 months have this pain. My pain level was a 7 or 8 all morning and afternoon, I couldn't even concentrate on school. During 3rd hour I layed in the library lunch room and heated my jaw and slept for 10 minutes before lunch. I decided to push through and go to 4th and 5th hour because I've already missed so much school. After 5th hour I left to go take a nap. I didn't sleep well but my pain was down to a 5-6 so I ate and went to dance practice. Dance was rough because I got kicked in the back of the neck pretty hard and made my headache and neck pain even worse. Then we had a basketball game to preform at, and by 8 o'clock I was exhausted. I was supposed to have my recital dance class at my studio but I didn't go. I couldn't it take anymore. I'm exhausted and wishing for the weekend and it's only Monday. I hate that. I feel like I am wishing my senior year away. I'm leaving in 7 months and that scares me to death."
"Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous hand." Isaiah 41:10
"How awesome is that?"
January 10th- 1 hour 5 times a day
January 31th- 1 hour and 15 minutes 5 times a day
February 1st-
Today I left with my dance team to Orlando Florida for our national dance team competition. It was a long day but I am so excited to compete tomorrow!
February 2nd-
Today we competed our kick routine to all that jazz we had some mistakes but overall we did pretty good considering one girl on our team had her shoe fly off and still completed the whole dance including a long series of second turns. We didn't make it into the semi-finals and were all disappointed. on the other hand we had today and tomorrow to explore Disney world!
February 3rd-
Today I spent the day sleeping a little because I was exhausted and then I hung back and relaxed by the pool with my sister and a couple of our friends. Tonight first we went to Downtown Disney and ate dinner and shopped. Then Disney shut down the park for the dance teams and we had a blast riding the rides together especially tower of terror.
February 4th-
Today everyone flew back home except for me and my mom. We rented a car and headed to St. Petersburg for my 3 month appointment. As soon as we arrived at our hotel I crashed and slept for quite awhile. I was somewhat nervous about my appointment tomorrow and hoped everything would go well.
February 5th- 3 month appointment with Dr. Piper 8 a.m.
Today was my appointment with Dr. Piper. He told us that my fat grafts looked good and that I had possible bone growth, both good news! However I am still in the same amount of pain as always and struggling everyday, trying to get better. He noticed that my first cervical vertebra, the atlas, was both tilted and rotated. This isn't his expertise and suggested we see someone. He also suggested that I might have Ehlers-Danlos disease which is a connective tissue disorder. Most of my symptoms match this disease and he thought it would be worth our time to get checked. In a way this was a good appointment, in theory I was doing good, but not really. I guess this means more doctor appointments and more searching. I am willing to do whatever at this point. I just want to heal, this is supposed to be my "recovery" but that's kind of a joke when I am no better than before...but for now I am ready to go home to my family and see Grant.
3 Month mark!!!- February 7th
February 17th-
Today I turned 18, I had church and Sunday school then a 2 hour dance practice then I was off to my Nana and Papa's house for lunch, cake and presents. I loved spending time with my grandparents and my family, but I couldn't shake how much pain I was in today. I ignored it and kept busy not thinking about it, but that only lasts so long. When we left and went back to my house to hang out with Grant I broke down. Laying there I was so angry. Why today why cant I be a normal 18 year old and enjoy this day. I told Grant that I couldn't do this anymore, that I couldn't take it. I was in so much pain that tears were flowing down my face. He tried to comfort me and told me that I could, I told him that I couldn't and didn't want to. I just wanted to feel better. I was exhausted with pain, irritated that I was ruining my birthday by being upset and snapping at Grant like always when I'm in pain. He didn't get mad just took it and took care of me. Could I ask for a better best friend? He went and got my medicines, ice for my neck and heat for my face and just layed there with me until I was asleep. He knows that the only time I'm not in pain is when I sleep. I was upset that I couldn't have stayed up and talked to him but we always have tomorrow right?
4 Month mark!!!- March 7th
March 15th-
Today I am a little frustrated. I am sitting in class researching Ehlers-Danlos disease and misaligned atlas bones. I feel as though I need to find my own answers and treatment because no one else is. Doctors tell me there is nothing wrong which I feel like is just a reason for them to lazy and not look deeper into my obvious issues. Dr. Piper knows somethings wrong but doesn't know how to help. There are so many different options to address my neck, but how am I supposed to know if these treatments are things that actually work or just scams? I wish I could find a doctor that would help me and "fix me"! I am exhausted and angry and just want to be ME again. I am not me when I have to constantly ignore pain, I snap at people I love, I get angry and upset, I'm not me. I want Michaela back.
April 1st-
Only 4 hours in my splint during the day!!!!
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