Skip to main content

It's Chiari Awareness Month! (Posted 9/3/2016)

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

Comments

Popular posts from this blog

3 Months & Counting (Posted 8/8/2016)

Hello everyone. It's about time for another update! Many things have happened in the past three weeks, but I just find it weird that I'm a day away from my three month post-op mark. It feels like it was just yesterday that I was still a freshman at Cornish moving out and trying to prepare for the surgery itself! July 24th-31st I was able to be in Huntington Beach, CA with my best friend Megan! It was such a perfect getaway, nice and relaxing. It was so great to see her and to be able to escape my reality, even if it was just for a week. I could write about that trip for hours, so I will just keep it at that so I don't begin to ramble. When I got home, I didn't give myself a break. The next day, I took a contemporary class, taught a class, and went to physical therapy and I did pretty well I have to say! I've been working really hard in my rehabilitation process with physical therapy and massage therapy and it's been helping a lot. At my 6 week appointment, I was...

2 Weeks Post-Op (Posted 5/23/2016)

I cannot believe it has only been two weeks since I had my massive surgery. I can honestly say that I am pretty darn proud of how far I have come since May 9th. On a side note, I was trying to create a mid-week post, but for now at least I think updating once a week through my blog is most beneficial for myself. This way all of my followers can get a summary of how things are and I can reflect on my personal progress! So here we are. This past week has been a lot easier than the last. After my puking incident, we were able to get my pain under control and have it stay that way consistently. I was noticing a pattern of what times during the day I get tired or need rest and when my pain is increased. By switching some of my medications around on my time schedule, I was feeling a lot better and more relaxed (to the highest degree a brain surgery patient can be). Wednesday was my first day out of the house since Oliver's adoption and it was so successful! I'm going to be honest and...

Day 4 Post-Op (Posted 5/13/2016)

Well, I had my surgery! Check in time for it was at 6am, so I was up bright and early along with my whole family. My anxiety level was through the roof as expected. The first nurse then called me in and took me back to registration and I had my mom come with me. At that point I had changed into my gown and was on the hospital bed with an IV line in me. It was all happening so quickly and I was so scared that I started crying. Oh and of course I am the youngest patient in there... But my nurse Jenn at that time was super nice and helped me out and so did my mom. Then I had to say goodbye to my family and go down into pre-op and OR. I started crying again during pre-op cause there were so many weird noises, oxygen tanks, needles, and bright bright BRIGHT big lights. My anxiety was even higher. So after I met my anesthesiologist, I was given a calming medication (aka "happy juice") and right after they inserted that into my IV. After that moment, I blacked out and don't reme...