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

Post a Comment

Popular posts from this blog

End of Year Recap: 2020 Edition

Well what a year it has been .. Everyone knows this though, so I'm not going to go into too much depth about how crap of a year it was and say all the cliche things about how "excited" I am about 2021. As much as I truly do hope this next year is going to be a different year and hopefully full of positive change, I just don't trust people around me to make it happen! It takes all of us to work together, but there's too many people out there who don't think this can effect them, and you all know what I mean when I say "this." I'm thankful though to live in a state where things are taken much more seriously and cases are actually much lower than the rest of the country due to our state government taking those earlier precautions. So for that, I'm grateful.  This year for me has for sure been one of the hardest yet. I used to never worry about my work ... I've had a job or two since I was 16 years old, and to have to go onto unemployment for...
Post a Comment
Read more

4 Weeks Post-Op (Posted 6/6/2016)

I can't believe it's been just about a month since I've had my surgery! It feels like time has gone by so dang slow, but if I reflect on my journey, time has gone by relatively quick. I have been making some pretty good strides. We are successfully weaning me down off my narcotics. I got rid of my 3:15am dose, I only take a muscle relaxer at 12:15am, and during the day my dose of oxy has decreased from 3 to 2 tablets and I every other dose I only take 1 tablet. I'm hoping that this week I will get down to only taking 1 oxy and then if that works, the following week I could take an oxy only if I don't take a muscle relaxer. That's my hope at least! Lately I have been thinking about how being diagnosed with Chiari is permanently changing my life. Before surgery I was just mainly focused on the fact that I was having a major operation done and honestly I was just trying to get through the rest of the semester at Cornish in one piece. After surgery for the past thre...
Post a Comment
Read more