A big hello to all of my followers and a big thank you for being so patient... This is probably the longest I've waited to give an update, but I have had one hell of a month.
Side note: One of the best things that have happened this month was the article from South Sound Talk on me. I have the link below :) it follows my story: my diagnosis and how I doing now. So check it out!
http://www.southsoundtalk.com/2016/09/08/dancers-focus-remains-on-pointe-through-brain-surgery/
Alrighty, time to get to the real stuff.. Earlier this month or even this week (Chiari brain fog guys am I right?) Any who.. We were talking and we talked about how we hear all of these success stories, but they never or barely touch on the hard times, because people want to hear about the good with success stories. Totally understandable. However I feel like that's why I failed and failed over and over again to post anything, because it truly didn't feel like any good was happening in my day-to-day life. It's harsh, but I've learned more than ever in the past three weeks that my surgery and condition is no joke... So here I am, and this post isn't a happy one, but it's a real one.
I never expected this recovery to be like this, and I don't think anyone did. I guess there's no real way to prepare yourself for it... I think that everyone, myself included, thought that I would have the surgery, have a few month of recovery, and come back to Cornish in the fall all good again. The problem with Chiari is that nothing is concrete besides the fact that your brain ran away from it's intended home. Surgeons conduct surgery differently, each patient has their own unique set of symptoms, and you never know what will happen post-surgery. I just turned 20, and I'm mad. I'm very very mad and frustrated and I'm not experienced at feeling those emotions. Someone recently told me that what I'm going through is similar to the grief process itself, that I am mourning the loss of my previous life before I became sick and gained a label. That person was extremely correct. That is exactly what is happening... I'm handling it the best I can, but it is most definitely not sunshine and rainbows. I don't know what I would do without my support system that I have around me. Even when I'm not home, the people I surround myself with make me feel the best that I can. It is such a personal and lonely journey and I have put up a brave front for so long, but now I'm accepting that that takes a lot of energy and that I just need to feel what I feel.
Everything in my head is so jumbled up in my head that I hope this all makes sense, or at least attempts to make sense. Thank you all for always lifting me up. #CMstrong
Friday, September 30, 2016
Saturday, September 3, 2016
It's Chiari Awareness Month!!!!!!
Hello my fellow followers! WELCOME TO CHIARI AWARENESS MONTH!!!! It's really fitting since I spent most of my day at Swedish getting MRIs and seeing my surgeon for follow ups. Everything is looking pretty good. It's weird to see such a big chunk of my skull and spine just gone. I do have some scar tissue building up, as to be expected, but with more physical and massage therapy it should get better. (MRI images from before and after surgery are below).
This is a really important update for me to be posting for many reasons. As I am writing this, I am sitting on the 20th floor of my beautiful dorm building looking over the skyline of Seattle thinking about how there was a much bigger chance of me not coming back for this school year. I am extremely hard on myself, and it has been a seriously rough journey to get to where I am right now. Classes start back up this coming Tuesday and the only thing I can think about is how I don't want to make a fool out of myself. I was telling this to some of my friends and they reminded me that just a few months back, I could barely walk across the room let alone lift my head up off my stack of pillows. I have such high expectations of myself, and I know that my journey is far from ending, but I'm not going to lie to my family, friends, and most importantly myself. I come off very positive about where my life is going but the ratio of positive to negative thoughts is most definitely not equal. All I can do is continue to count my blessings and beat the odds.
So like I mentioned earlier (hence my title), September is Chiari Awareness Month and I cannot be more excited about it! As a sufferer of this rare and serious condition, I feel like it is my duty to advocate and educate and I am so so glad there is a month out of the year specifically for that, even though I will advocate all months. I have always been drawn to fundraising and doing things for good causes to support or raise awareness, but there is just something so strong and powerful about educating the world around you about an ordeal you're going through yourself. The Chiari community is a very small one, but I already feel its power, and all I can hope for for my lifetime is to have CM gain more attention that it and its sufferers deserve, and I have a strong gut feeling that it is my purpose in life to make that happen. It's crazy how drastically my life path has changed, but I consider myself one of the lucky ones to be able to combine my art and my health into one. So many thoughts are buzzing around in my head as of now and I cannot wait to see where they take me.
ALRIGHTY. That was a lot but hey, this month will have more posts than usual. I have included some websites for all of you to look at and I also wanted to show pictures of my actual MRIs from before and after surgery. Pretty crazy stuff! Also I would love it if you all could share my blog through social media just to try and get the word out there even more. XOXO #CMstrong
Normal Brain
This is a really important update for me to be posting for many reasons. As I am writing this, I am sitting on the 20th floor of my beautiful dorm building looking over the skyline of Seattle thinking about how there was a much bigger chance of me not coming back for this school year. I am extremely hard on myself, and it has been a seriously rough journey to get to where I am right now. Classes start back up this coming Tuesday and the only thing I can think about is how I don't want to make a fool out of myself. I was telling this to some of my friends and they reminded me that just a few months back, I could barely walk across the room let alone lift my head up off my stack of pillows. I have such high expectations of myself, and I know that my journey is far from ending, but I'm not going to lie to my family, friends, and most importantly myself. I come off very positive about where my life is going but the ratio of positive to negative thoughts is most definitely not equal. All I can do is continue to count my blessings and beat the odds.
So like I mentioned earlier (hence my title), September is Chiari Awareness Month and I cannot be more excited about it! As a sufferer of this rare and serious condition, I feel like it is my duty to advocate and educate and I am so so glad there is a month out of the year specifically for that, even though I will advocate all months. I have always been drawn to fundraising and doing things for good causes to support or raise awareness, but there is just something so strong and powerful about educating the world around you about an ordeal you're going through yourself. The Chiari community is a very small one, but I already feel its power, and all I can hope for for my lifetime is to have CM gain more attention that it and its sufferers deserve, and I have a strong gut feeling that it is my purpose in life to make that happen. It's crazy how drastically my life path has changed, but I consider myself one of the lucky ones to be able to combine my art and my health into one. So many thoughts are buzzing around in my head as of now and I cannot wait to see where they take me.
ALRIGHTY. That was a lot but hey, this month will have more posts than usual. I have included some websites for all of you to look at and I also wanted to show pictures of my actual MRIs from before and after surgery. Pretty crazy stuff! Also I would love it if you all could share my blog through social media just to try and get the word out there even more. XOXO #CMstrong
Normal Brain
Other Sites:
conquerchiari.org
asap.org
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