Today started off pretty rough, couldn't sleep well because of the pain in my neck and back, and then woke up for class this morning with the worst headache I've had in a while. I decided to skip my class, take some pain relievers and try and get some more sleep.
Went to my second class and the headache was still hanging around. It's been a while since I've had one this bad and just wanted to stay in bed all day. I didn't, and now I have alot of homework to work on and get completed for this week. Oh the joys of college.
I'm debating moving home next semester. It doesn't sounds much fun to move back into your house with your parents, but it will be my last semester and I would really like to save money that I spend to live in a box on campus. Plus, the beds here are terrible, and I think that's part of my problem with my neck and back pain...not to mention headaches. BLECK!
Tuesday, October 20, 2009
Sunday, October 18, 2009
The man in my life
I have the greatest man (besides my daddy of course) in my life. We are getting married June 12, 2010. Brock has been my support through my rough journey, and he has never once complained about having to help me.
I met him October of 2006, and we were exclusive from the very beginning. I got my diagnosis about 6 months later, and he never once got the urge to leave, or run scared because of what was to come.
Because of my daily headaches and muscle weakness, I've been limited to my activities. When moving in to college and moving out I would want to carry my stuff and he would never let me. He carried my stuff out of the dorms and his stuff and never complained about it. He's very considerate and although he doesn't know what I go through everyday, he tries to understand and make sure I'm as comfortable as possible. He asks me how i'm feeling probably about 2-3 times a day...and when he asks he really wants to know the truth, where there are those people who ask how you are doing and really just want a two word answer. They want to feel good that they asked but they really don't want to know the details. You know who these people are.
At the time of my surgery, my fiance was playing football at college and was very busy with practice and school. My surgery was on a Thursday, and the night before he came and stayed the night at my house with my family (I had taken the semester of school because I wasn't sure what to expect with recovery) and we left early the next morning. His football coach didn't have a problem letting him miss practice, and I don't think it bothered Brock either. I had surgery at about 10:15 am, and my family hung out in the waiting room and tried to relax. I had gotten a little red bear f
rom Brock for Valentine's day, and he brought that along and held her during my surgery. He even took a picture of himself holding her in the waiting room.
When my family was finally able to see me after surgery, I was sooooo thirsty and Brock fed me ice chips with a spoon for the longest time. Whenever he came in to see me he'd hold my hand, feed me ice chips, or just talk sweetly to me. Everytime he left he'd kiss my hand.
He left Friday afternoon, and headed to school for practice. He had a football game the next day, and came back up the day after with his parents and sister. They all visited, and thank goodness it wasn't any sooner because Saturday I was finally coherent enough and feeling better that I was able to talk and enjoy the visitors. He stayed the night with me (my mom stayed with me the entire time) and then left again Sunday night. Brock let my parents go out to eat and get some time away from the hospital which I know my mom was really needing.
I came home Monday afternoon, and Brock stayed on the couch next to me for the next 2 weeks. He'd get up and leave early in the morning, around 7:00am for classes. He'd go to class, do homework, go to football practice, and then get back home around 7:15pm and would eat dinner with us and keep my company. My medicine was stored upstairs because my little brother was 4 and we didn't want him to get into them. In the middle of the night, Brock would go upstairs and get my medicine for me...no questions asked. I knew he was the one at that point. Seeing how dedicated he was to me, and unwavering was the security that I needed. I've never been so sure that I'm making the right decision by committing to him for life, I couldn't be happier.
This is one of our engagement pictures.
I met him October of 2006, and we were exclusive from the very beginning. I got my diagnosis about 6 months later, and he never once got the urge to leave, or run scared because of what was to come.
Because of my daily headaches and muscle weakness, I've been limited to my activities. When moving in to college and moving out I would want to carry my stuff and he would never let me. He carried my stuff out of the dorms and his stuff and never complained about it. He's very considerate and although he doesn't know what I go through everyday, he tries to understand and make sure I'm as comfortable as possible. He asks me how i'm feeling probably about 2-3 times a day...and when he asks he really wants to know the truth, where there are those people who ask how you are doing and really just want a two word answer. They want to feel good that they asked but they really don't want to know the details. You know who these people are.
At the time of my surgery, my fiance was playing football at college and was very busy with practice and school. My surgery was on a Thursday, and the night before he came and stayed the night at my house with my family (I had taken the semester of school because I wasn't sure what to expect with recovery) and we left early the next morning. His football coach didn't have a problem letting him miss practice, and I don't think it bothered Brock either. I had surgery at about 10:15 am, and my family hung out in the waiting room and tried to relax. I had gotten a little red bear f
rom Brock for Valentine's day, and he brought that along and held her during my surgery. He even took a picture of himself holding her in the waiting room.When my family was finally able to see me after surgery, I was sooooo thirsty and Brock fed me ice chips with a spoon for the longest time. Whenever he came in to see me he'd hold my hand, feed me ice chips, or just talk sweetly to me. Everytime he left he'd kiss my hand.
He left Friday afternoon, and headed to school for practice. He had a football game the next day, and came back up the day after with his parents and sister. They all visited, and thank goodness it wasn't any sooner because Saturday I was finally coherent enough and feeling better that I was able to talk and enjoy the visitors. He stayed the night with me (my mom stayed with me the entire time) and then left again Sunday night. Brock let my parents go out to eat and get some time away from the hospital which I know my mom was really needing.
I came home Monday afternoon, and Brock stayed on the couch next to me for the next 2 weeks. He'd get up and leave early in the morning, around 7:00am for classes. He'd go to class, do homework, go to football practice, and then get back home around 7:15pm and would eat dinner with us and keep my company. My medicine was stored upstairs because my little brother was 4 and we didn't want him to get into them. In the middle of the night, Brock would go upstairs and get my medicine for me...no questions asked. I knew he was the one at that point. Seeing how dedicated he was to me, and unwavering was the security that I needed. I've never been so sure that I'm making the right decision by committing to him for life, I couldn't be happier.
This is one of our engagement pictures.
All about Chiari
This section is all about Chiari.
Arnold- Chiari Malformation or ACM is a congenital malformation, which means a person can be born with it. It is a serious condition which debilitates the body in such a way that it can eventually lead to death.ACM was first discovered in the 1890's by a German Pathologist named Professor Hans Chiari, And his colleague Dr Julius Arnold. Together they Categorized the disease into four different categories by order of severity with IV or 4 being the most advanced. The symptoms of ACM do not always appear at birth or in early childhood. Sometimes adults show signs of a neurological disorder but the ACM will go undiagnosed. Therefore many people do not know they have this disease until it is in its latter stages. The surgeries and day to day struggles often leave ACM patients and their families devastated, both physically and financially.
there is a compartment in the back of the skull that holds the Cerebellar Tonsils that extend to the bottom of the Skull. These tonsils are normally round but in a case of ACM they become elongated and then protrude down the Spinal Canal and can become herniated. This blocks the flow of Spinal Fluid to the brain, the Cranial Nerves, and the Brain stem, resulting in the lower portion of the brain becoming compressed or in some cases crushed. This in turn affects brain function in certain areas of the brain. Usually once this has happened the disease is in it's advanced stages.
Type I goes unnoticed until certain neurological problems arise in the person's teens and twenties. The base of the skull and upper area of the spine at this time are not forming properly. Type II is the most common type of ACM. In this type the back of the brain literally shifts down through the bottom of the skull. Infants who are born with Hydrocephalus can also be associated with ACM. Hydrocephalus is a birth defect where there is an overproduction of cerebral spinal fluid inside of the brain, fluid increases and can cause death if untreated, a shunt is typically placed in the brain and drained throughout the body. Type III is a little more advanced than type II, the back of the brain actually protrudes out of an opening near the back of the human skull. Type IV is where the entire back of the brain does not develop normally at all, resulting in severe mental dysfunction.
Typically, symptoms do not arise until people are in their teens or early adult years. In very small infants, slow movements and difficulty in swallowing are the onset of symptoms. Most patients complain of dizziness, vertigo or a spinning sensation, severe head and neck pain, headaches that are made worse by coughing or sneezing, muscle weakness and balance problems. Vision and hearing problems can also occur in severe cases. Difficulty swallowing is also a stage four advancement into the disease and can only be relieved by surgery.
Some form of surgery is typically the only option for patients who want to help relieve their symptoms. Relieving the pressure on the brain will most likely result in successful but temporary treatment, although surgery is very risky.
--Written by Julie
Freelance writer and winemaker who enjoys writing on a wide range of topics and genres. Julie enjoys research and uncovering new and fresh ideas in which to share with her reading audience
Be sure to visit www.asap.org for more information!!
Arnold- Chiari Malformation or ACM is a congenital malformation, which means a person can be born with it. It is a serious condition which debilitates the body in such a way that it can eventually lead to death.ACM was first discovered in the 1890's by a German Pathologist named Professor Hans Chiari, And his colleague Dr Julius Arnold. Together they Categorized the disease into four different categories by order of severity with IV or 4 being the most advanced. The symptoms of ACM do not always appear at birth or in early childhood. Sometimes adults show signs of a neurological disorder but the ACM will go undiagnosed. Therefore many people do not know they have this disease until it is in its latter stages. The surgeries and day to day struggles often leave ACM patients and their families devastated, both physically and financially.
there is a compartment in the back of the skull that holds the Cerebellar Tonsils that extend to the bottom of the Skull. These tonsils are normally round but in a case of ACM they become elongated and then protrude down the Spinal Canal and can become herniated. This blocks the flow of Spinal Fluid to the brain, the Cranial Nerves, and the Brain stem, resulting in the lower portion of the brain becoming compressed or in some cases crushed. This in turn affects brain function in certain areas of the brain. Usually once this has happened the disease is in it's advanced stages.
Type I goes unnoticed until certain neurological problems arise in the person's teens and twenties. The base of the skull and upper area of the spine at this time are not forming properly. Type II is the most common type of ACM. In this type the back of the brain literally shifts down through the bottom of the skull. Infants who are born with Hydrocephalus can also be associated with ACM. Hydrocephalus is a birth defect where there is an overproduction of cerebral spinal fluid inside of the brain, fluid increases and can cause death if untreated, a shunt is typically placed in the brain and drained throughout the body. Type III is a little more advanced than type II, the back of the brain actually protrudes out of an opening near the back of the human skull. Type IV is where the entire back of the brain does not develop normally at all, resulting in severe mental dysfunction.
Typically, symptoms do not arise until people are in their teens or early adult years. In very small infants, slow movements and difficulty in swallowing are the onset of symptoms. Most patients complain of dizziness, vertigo or a spinning sensation, severe head and neck pain, headaches that are made worse by coughing or sneezing, muscle weakness and balance problems. Vision and hearing problems can also occur in severe cases. Difficulty swallowing is also a stage four advancement into the disease and can only be relieved by surgery.
Some form of surgery is typically the only option for patients who want to help relieve their symptoms. Relieving the pressure on the brain will most likely result in successful but temporary treatment, although surgery is very risky.
--Written by Julie
Freelance writer and winemaker who enjoys writing on a wide range of topics and genres. Julie enjoys research and uncovering new and fresh ideas in which to share with her reading audience
Be sure to visit www.asap.org for more information!!
My Story
Lately, I've felt called to change someone's life. I'm not sure if there's a reason for it, but I want to change the world. How I'm going to do this I'm not sure about yet, but I figure getting my thoughts out there will help me decide. I'm going to tell you my story first, so grab a cup of coffee and continue reading.
I grew up playing sports, being wild and full of energy, and this all got harder. I had headaches growing up that I couldn't explain. I don't think my parents believed me, and would often get upset with me for missing school because of them. Little did either of us know what was coming next. When I was a senior in high school I knew something was wrong.
My senior year, at age 17, I was getting my headaches much more frequently. Getting up in the morning was hard, and I was dizzy. I remember wrestling with a friend and leaning back and getting this rush that was followed by a dizzy spell. I laid there and looked at my friend who had this blank look on his face, neither of us knew what was happening. After a few minutes I got the worst headache I had ever had.
Being a 'tough' farm girl kept me going, without fail I didn't let this stop my life. I started college and the first night that all the students were on campus they were having a dance and I was going to meet a guy there that I met on facebook during the summer. That afternoon we went out to play football, and I apparently over did it and got dizzy continuously and felt like I was going to vomit all night. Well, I missed the dance. My parents came to campus and checked on me, and all my roommates left me to go to the dance and get drunk. Great friends, huh.
After a few months, I got extremely dizzy and it wouldn't stop like it had before. I called my mom who came and took me to the doctor and diagnosed me with Benign parisoximal positional vertigo. Basically it meant that there were calcium deposits built up in my ears, and when I moved they would drag through my little hairs in the ear (cilia) and cause the dizziness. He recommended an MRI but told me that these exercises would help my dizziness. I think my parents didn't want to get the MRI because 1- they didn't believe me and 2- it was really expensive.
2 months later we decided to get the MRI done because I was having some major headaches. I remember laying there through the MRI and thinking, what if I have a tumor? or a brain aneurysm? Well, after we got home about 30 minutes after the MRI the doctor called. He told me I had an Arnold Chiari Malformation. Just like you, I had no idea what he was talking about. He explained it as best he could over the phone, and my mom and I did a little research too. He asked us to come in the next day to look at the MRI and get more information from him.
An Arnold Chiari Malformation is a rare but deadly neurological disorder that effects less than 200,000 people in the United States.
I was officially diagnosed with an Arnold Chiari Malformation type 1 with syringohydromyelia in April 2007, at 18 years of age.
I was sent to a neurologist in a city nearby, and my mom and I went up there and meet my boyfriend (now fiance) at the hospital. When we finally got into the exam room he kicked my boyfriend out of the room even though I made sure he knew that he was allowed to be in there with me. Apparently he was worried about HIPPA or something. Anyways, he was sure my headaches were caused by my occipital nerve and my solution was to get a new pillow, mattress, etc. He then decided to just check my MRI on a CD and came back and said I needed to go to the neurosurgeon. His credibility went out the window.
My images were sent to Rodchester, and they sent a letter back that stated they were refusing services for 1 of 3 reasons. I don't remember them exactly but bascially it was because they couldn't offer me treatment for one reason or another.
Dr. Menezes from Iowa City agreed to see me, and got me in shortly after he recieved my information. He scheduled me at the end of the day, and knowing how doctors are of course we had to wait quite a while. My dad, mom and I waited over 3 hours and finally got to see the doctor around 6pm. He diagnosed me fairly quickly, and tried to explain things clearly..but of course it wasn't clear...AT ALL!
I had surgery a few months later, September 13, 2007. It went well, and my recovery was quick and problem free. The bottom of my skull was curved inward instead of out like it is supposed to be, that was removed and the top of my spinal cord vertebrae were shaved a bit. All in all it was thought to be a successful surgery. I still have problems, daily...and I'm sure you'll become more aware as you continue to read my blogs.
Being 18, and diagnosed with this condition I had never heard about before was scary. I didn't know what to expect next. Part of my mission is to reach out to the young and newly diagnosed and be there for them during this unsure time. I wasn't sure what to expect, and felt very lonely during the year following my diagnosis and want to be there for others...so they don't have to go through the same thing that I did alone.
I grew up playing sports, being wild and full of energy, and this all got harder. I had headaches growing up that I couldn't explain. I don't think my parents believed me, and would often get upset with me for missing school because of them. Little did either of us know what was coming next. When I was a senior in high school I knew something was wrong.
My senior year, at age 17, I was getting my headaches much more frequently. Getting up in the morning was hard, and I was dizzy. I remember wrestling with a friend and leaning back and getting this rush that was followed by a dizzy spell. I laid there and looked at my friend who had this blank look on his face, neither of us knew what was happening. After a few minutes I got the worst headache I had ever had.
Being a 'tough' farm girl kept me going, without fail I didn't let this stop my life. I started college and the first night that all the students were on campus they were having a dance and I was going to meet a guy there that I met on facebook during the summer. That afternoon we went out to play football, and I apparently over did it and got dizzy continuously and felt like I was going to vomit all night. Well, I missed the dance. My parents came to campus and checked on me, and all my roommates left me to go to the dance and get drunk. Great friends, huh.
After a few months, I got extremely dizzy and it wouldn't stop like it had before. I called my mom who came and took me to the doctor and diagnosed me with Benign parisoximal positional vertigo. Basically it meant that there were calcium deposits built up in my ears, and when I moved they would drag through my little hairs in the ear (cilia) and cause the dizziness. He recommended an MRI but told me that these exercises would help my dizziness. I think my parents didn't want to get the MRI because 1- they didn't believe me and 2- it was really expensive.
2 months later we decided to get the MRI done because I was having some major headaches. I remember laying there through the MRI and thinking, what if I have a tumor? or a brain aneurysm? Well, after we got home about 30 minutes after the MRI the doctor called. He told me I had an Arnold Chiari Malformation. Just like you, I had no idea what he was talking about. He explained it as best he could over the phone, and my mom and I did a little research too. He asked us to come in the next day to look at the MRI and get more information from him.
An Arnold Chiari Malformation is a rare but deadly neurological disorder that effects less than 200,000 people in the United States.
I was officially diagnosed with an Arnold Chiari Malformation type 1 with syringohydromyelia in April 2007, at 18 years of age.
I was sent to a neurologist in a city nearby, and my mom and I went up there and meet my boyfriend (now fiance) at the hospital. When we finally got into the exam room he kicked my boyfriend out of the room even though I made sure he knew that he was allowed to be in there with me. Apparently he was worried about HIPPA or something. Anyways, he was sure my headaches were caused by my occipital nerve and my solution was to get a new pillow, mattress, etc. He then decided to just check my MRI on a CD and came back and said I needed to go to the neurosurgeon. His credibility went out the window.
My images were sent to Rodchester, and they sent a letter back that stated they were refusing services for 1 of 3 reasons. I don't remember them exactly but bascially it was because they couldn't offer me treatment for one reason or another.
Dr. Menezes from Iowa City agreed to see me, and got me in shortly after he recieved my information. He scheduled me at the end of the day, and knowing how doctors are of course we had to wait quite a while. My dad, mom and I waited over 3 hours and finally got to see the doctor around 6pm. He diagnosed me fairly quickly, and tried to explain things clearly..but of course it wasn't clear...AT ALL!
I had surgery a few months later, September 13, 2007. It went well, and my recovery was quick and problem free. The bottom of my skull was curved inward instead of out like it is supposed to be, that was removed and the top of my spinal cord vertebrae were shaved a bit. All in all it was thought to be a successful surgery. I still have problems, daily...and I'm sure you'll become more aware as you continue to read my blogs.
Being 18, and diagnosed with this condition I had never heard about before was scary. I didn't know what to expect next. Part of my mission is to reach out to the young and newly diagnosed and be there for them during this unsure time. I wasn't sure what to expect, and felt very lonely during the year following my diagnosis and want to be there for others...so they don't have to go through the same thing that I did alone.
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