We are almost at single digits for my countdown to surgery! Classes here at Cornish ended today, well mostly. Finals week is next week but classes aren't held during that time, just optional ones. Tuesday I was very frustrated with myself so I decided to push through just about the entire Modern class, which I very quickly found out was a huge mistake... Luckily I don't have a chance to do that again. It's beyond challenging being in such a passionate environment and not being able to act on it. I just have to keep telling myself how great it will be when I am able to come back full force (easier said than done...).
In the meantime before surgery I am doing everything I can to keep myself healthy. Extra Vitamin C, extra sleep where I can get it, and really just relaxing. I am prepared to be a bit more anxious than normal these next 10 days. I know I am in such great hands at Swedish Medical Center, but it's normal to be scared out of your mind. I am so so SO appreciative of all of the love, support, hugs and prayers I've received. Thank you all so much from the bottom of my heart.
A lot of people have asked about what exactly happens in the surgery, so I found a really great websites with tons of information and one of these websites has a great ANIMATED (hehe) video of the surgery itself. Check them out!!
All about Chiari-Offical Site!
http://www.conquerchiari.org/index.html
Video:
http://www.methodisthealthsystem.org/body.cfm?id=3595#vm_A_a9c1d47d
Friday, April 29, 2016
Wednesday, April 20, 2016
It Gets Worse Before It Gets Better
Well it is safe to say that today and yesterday have thoroughly kicked my butt. I woke up yesterday with a decent amount of energy and it was great! Around 3pm however I went downhill. Everything became still, especially up and down my entire spine. My eyes became extra sensitive to any light, I was incredibly nauseous, my head was pounding, and when I stood up it felt as if I would fall over at any second. It actually scared me. I had never felt this bad in my entire life. Chiari was definitely winning.
That night things just continued to get worse. I fell asleep around 9:30pm (YAY) but didn't stay asleep for long. I proceeded to then wake up at 11pm, 1:30am, 2am, 3:30am, 5:30am and then 8:30am... The pain was awful and I couldn't stop crying all night. I read that a lot of Chiari patients have a hard time when weather changes, particularly when it gets hot. Well, combine that with a hot Seattle day, a hot dorm room, and an even hotter and stuffier bottom bunk and I was screwed. I woke up this morning with my back and neck screaming at me, my stomach hating me, and all I could do was cry. I couldn't get out of bed. I had my friend bring me some breakfast that I hardly even touched. As of 5:30pm now I can move around my dorm a bit more, but I get overheated pretty quickly and my stomach still doesn't like me and when I do eat, I don't really taste the food anyways.
All of this will in the end make me stronger, I just am not a fan of the past few days. I'm praying for a better sleep tonight and to start to feel better soon. Thank you all again for your prayers and support.
That night things just continued to get worse. I fell asleep around 9:30pm (YAY) but didn't stay asleep for long. I proceeded to then wake up at 11pm, 1:30am, 2am, 3:30am, 5:30am and then 8:30am... The pain was awful and I couldn't stop crying all night. I read that a lot of Chiari patients have a hard time when weather changes, particularly when it gets hot. Well, combine that with a hot Seattle day, a hot dorm room, and an even hotter and stuffier bottom bunk and I was screwed. I woke up this morning with my back and neck screaming at me, my stomach hating me, and all I could do was cry. I couldn't get out of bed. I had my friend bring me some breakfast that I hardly even touched. As of 5:30pm now I can move around my dorm a bit more, but I get overheated pretty quickly and my stomach still doesn't like me and when I do eat, I don't really taste the food anyways.
All of this will in the end make me stronger, I just am not a fan of the past few days. I'm praying for a better sleep tonight and to start to feel better soon. Thank you all again for your prayers and support.
Friday, April 15, 2016
Just an update...
My symptoms seem to be getting a bit worse, or maybe I just had a bad week. I haven't been dancing as much as I usually do, and that has helped subside some of the sharp pains. However the pressure that is consistent keeps growing. I noticed that it's not necessarily as bad in the morning, but if I work myself too hard, the pressure is unbearable. I am much too excited about this surgery and for the day I feel no pain. That is the only way I can stay positive about my situation. I just continue to think about the day where I can participate in a full dance class using my entire body instead of having to modify, or when I will be able to go on a hike, to just even go through a full day not feeling fatigued. Hope and the future is what keeps me chugging through.
Once again thank you for everyone's kind words and supportive spirits. #CMstrong
My symptoms seem to be getting a bit worse, or maybe I just had a bad week. I haven't been dancing as much as I usually do, and that has helped subside some of the sharp pains. However the pressure that is consistent keeps growing. I noticed that it's not necessarily as bad in the morning, but if I work myself too hard, the pressure is unbearable. I am much too excited about this surgery and for the day I feel no pain. That is the only way I can stay positive about my situation. I just continue to think about the day where I can participate in a full dance class using my entire body instead of having to modify, or when I will be able to go on a hike, to just even go through a full day not feeling fatigued. Hope and the future is what keeps me chugging through.
Once again thank you for everyone's kind words and supportive spirits. #CMstrong
Monday, April 11, 2016
Each Day is a Blessing
This weekend I was able to go home and spend some quality time with my family. It is honestly very hard going through all of these medical struggles and being away from your biggest support system. However I feel rejuvenated and ready to take on this next week.
Earlier today I went on a hike. It was a hike I had been on many times before. It's about two miles all uphill and then two miles back downhill. It took me twice as long to complete the hike than it normally does and that's when I really realized how much my Chiari is effecting my life. I'm a person that tends to just work through things and not even notice how it is truly making me feel. Ever since my diagnosis, I've been consciously more aware of my symptoms, what is normal and not normal. I realized that I actually have a consistent pressure within my skull. I thought that was normal, and I guess it is normal on Chiari standards.
Back to the hike.. I love hiking. There's just something about the satisfaction of getting to the end and the pure bliss of looking over the edge of a cliff. Last summer I hiked all the time, and I did this particular hike multiple times with no problem. Today was a great day and I loved being outside, I just see now how much the Chiari is part of my every day. The pressure kept increasing as the hike continued and I became much more fatigued faster than ever before. When I ended the hike, I was pretty proud of myself for making it. I just now know that I really can't do more intense hikes before surgery, or I guess even after for a little while.
My title of this entry on my blog is that every day is a blessing. As I was reflecting on my day, I realized I was thinking a lot about how much pain I was in. Then I started thinking positively. Today my blessings were abundant. I was able to experience a thrill of a hike (even though it was a doozy), I got to hang out with my sister and best friend for hours, and I was able to have a nice dinner out with my entire family before heading back to school. It's the little things in my daily life and my support system that will get me through pre and post surgery times. Today I am blessed, just like I am every day. #CMstrong
Earlier today I went on a hike. It was a hike I had been on many times before. It's about two miles all uphill and then two miles back downhill. It took me twice as long to complete the hike than it normally does and that's when I really realized how much my Chiari is effecting my life. I'm a person that tends to just work through things and not even notice how it is truly making me feel. Ever since my diagnosis, I've been consciously more aware of my symptoms, what is normal and not normal. I realized that I actually have a consistent pressure within my skull. I thought that was normal, and I guess it is normal on Chiari standards.
Back to the hike.. I love hiking. There's just something about the satisfaction of getting to the end and the pure bliss of looking over the edge of a cliff. Last summer I hiked all the time, and I did this particular hike multiple times with no problem. Today was a great day and I loved being outside, I just see now how much the Chiari is part of my every day. The pressure kept increasing as the hike continued and I became much more fatigued faster than ever before. When I ended the hike, I was pretty proud of myself for making it. I just now know that I really can't do more intense hikes before surgery, or I guess even after for a little while.
My title of this entry on my blog is that every day is a blessing. As I was reflecting on my day, I realized I was thinking a lot about how much pain I was in. Then I started thinking positively. Today my blessings were abundant. I was able to experience a thrill of a hike (even though it was a doozy), I got to hang out with my sister and best friend for hours, and I was able to have a nice dinner out with my entire family before heading back to school. It's the little things in my daily life and my support system that will get me through pre and post surgery times. Today I am blessed, just like I am every day. #CMstrong
Thursday, April 7, 2016
Beautiful Day
It's days like this that drive me nuts, but make my heart happy all at the same time. I am extremely sensitive to the sunlight, and even though its absolutely breathtaking out, I can't be outside or open the blinds. It doesn't help that today I woke up in a lot of pain anyways. Put those two situations together and the day goes down the drain. I cannot wait to be pain free.
However, on a positive note, I received a lot of really great messages and comments about my first post! It makes me feel so much better to know that I have an army of people surrounding me and supporting. Thank you so so much :)
However, on a positive note, I received a lot of really great messages and comments about my first post! It makes me feel so much better to know that I have an army of people surrounding me and supporting. Thank you so so much :)
Wednesday, April 6, 2016
March 28, 2016: Day of Answers
Hello everyone! I just want to start out this blog by saying how much this blog means to me. After I was diagnosed with CM, I of course wanted to know more information about this condition so I turned to google. WebMD was extremely great with giving me medical information and statistics, but I wanted to know stories of real people who have suffered or are suffering just like I am. I started reading a bunch of blogs regarding Chiari and I loved how personal it was. It helped me wrap my head around what was going on, and that everything I was feeling emotionally and physically was completely normal. So that's when I decided to create my own blog, to record my own story, because every story is different and unique. & here we are :)
I can't recall when symptoms first started, but I do remember complaining of consistent head rushes (or head surges as I like to call them) since September of 2015, even though I consciously know that they were happening before this. At this point, they were only about a few seconds long in duration and would go away right after that, so I didn't really pay too much attention to them. However, by the time I came back to Cornish to start spring semester, these head surges were getting pretty awful. They would last longer than a few seconds and some even started to last hours long. The pressure that was happening inside my skull was unbearable and normal headache medicine wasn't doing the job.
For a while, that was my only symptom, just the head rushes. Things changed one Friday in February. I was in a late night rehearsal when all of a sudden I had a huge head surge and my vision went black. Luckily it only went away for about 5 seconds and then slowly came back, but it scared me half to death. After I came to terms, I noticed that my entire right arm was extremely numb and in a ton of pain. A few days later my arm came back to life, but the following weeks left me with random blurry vision here and there and numbness and tingling down the right side of my body. As you guys know, I am a dance major, and during this time I had a few performances on stage. The stage lights killed my head and made my vision go black multiple times in just a single routine. I needed answers.
Finally on March 23rd, after battles with the darn insurance company, I was able to get my MRI. The very next day, I get a call from my specialist at Swedish saying he needed to see me on Monday with a family member. Great. So I walk in to his office Monday, March 28th and my doctor shows me the images of my brain. There was a lesion on my brain looking as if it could be early onset MS or that I had a small stroke at some point in my life. The images also showed something called Chiari Malformation. My cerebellum was seeping into my spinal cord cavity. After the first specialist gave me the maybes of the results, he sent me down two floors where he had an appointment set up for me with the head of neurology, Dr. Delashaw. He took a look at my images, I told him all of my symptoms, and he told my mom and I that we should take care of this CM issue. He told me I needed to have surgery to remove part of my skull. He also told me that I will have check up MRIs to follow that lesion to make sure it isn't anything.
So there we have it. Chiari Malformation is what has been causing me all of this pain and suffering and on May 9th, I will have surgery to fix it all. Now, I have never had a single surgery before (unless you count getting your wisdom teeth out). I am definitely scared, but I am so BEYOND ready to be able to live my life fully again. I love having answers, I love knowing what I have, and I'm very excited to be able to start advocating and spreading awareness for this condition that so many doctors don't even know about.
Here's to new beginnings.
I can't recall when symptoms first started, but I do remember complaining of consistent head rushes (or head surges as I like to call them) since September of 2015, even though I consciously know that they were happening before this. At this point, they were only about a few seconds long in duration and would go away right after that, so I didn't really pay too much attention to them. However, by the time I came back to Cornish to start spring semester, these head surges were getting pretty awful. They would last longer than a few seconds and some even started to last hours long. The pressure that was happening inside my skull was unbearable and normal headache medicine wasn't doing the job.
For a while, that was my only symptom, just the head rushes. Things changed one Friday in February. I was in a late night rehearsal when all of a sudden I had a huge head surge and my vision went black. Luckily it only went away for about 5 seconds and then slowly came back, but it scared me half to death. After I came to terms, I noticed that my entire right arm was extremely numb and in a ton of pain. A few days later my arm came back to life, but the following weeks left me with random blurry vision here and there and numbness and tingling down the right side of my body. As you guys know, I am a dance major, and during this time I had a few performances on stage. The stage lights killed my head and made my vision go black multiple times in just a single routine. I needed answers.
Finally on March 23rd, after battles with the darn insurance company, I was able to get my MRI. The very next day, I get a call from my specialist at Swedish saying he needed to see me on Monday with a family member. Great. So I walk in to his office Monday, March 28th and my doctor shows me the images of my brain. There was a lesion on my brain looking as if it could be early onset MS or that I had a small stroke at some point in my life. The images also showed something called Chiari Malformation. My cerebellum was seeping into my spinal cord cavity. After the first specialist gave me the maybes of the results, he sent me down two floors where he had an appointment set up for me with the head of neurology, Dr. Delashaw. He took a look at my images, I told him all of my symptoms, and he told my mom and I that we should take care of this CM issue. He told me I needed to have surgery to remove part of my skull. He also told me that I will have check up MRIs to follow that lesion to make sure it isn't anything.
So there we have it. Chiari Malformation is what has been causing me all of this pain and suffering and on May 9th, I will have surgery to fix it all. Now, I have never had a single surgery before (unless you count getting your wisdom teeth out). I am definitely scared, but I am so BEYOND ready to be able to live my life fully again. I love having answers, I love knowing what I have, and I'm very excited to be able to start advocating and spreading awareness for this condition that so many doctors don't even know about.
Here's to new beginnings.
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