The Unknown

Hey there everyone. I have had a few very eye-opening weeks since I last wrote. As of yesterday, I am in a flare up meaning that my Chiari symptoms are heightened and the chronic pain and fatigue increase but absurd amounts. Who the heck knows what causes this or how to fix it, so here I am just trying to ride it out. Pretty discouraging to say the least, but I'm still alive.

On the bright side, my neurosurgeon sent a referral for me to the Swedish Pain Clinic! I'm very excited about that because they have all of the resources for me to take some of this pain away (of course not all of it) and I can hopefully begin to feel like someone out there knows how to help me. I'm sure as hell not going to live like this and not self-advocate and take charge of my life. That's definitely not how I roll. I have not seen the doctors at the pain clinic yet due to the fact that the local non-Swedish pain clinic closed down, so they have an overflow of new patients. Totally understandable. I just need to dig deep to get through until that appointment comes. I have a follow up MRI to check to see if I have a syrinx (fluid-filled cyst) in my spinal cord at the end of November and I will see my surgeon two days later. I'm hoping that I do not have a syrinx, that I'll be having regular appointments with the pain clinic, and will be on a better, more hopeful track by that time.

This post is titled "The Unknown" because that's pretty much how I would describe my life. I won't go into too much detail about that at the moment, but I did include a piece of work I have written recently that ties in to this idea. I hope y'all enjoy and once again, thank you for the AMAZING support. xoxo

What is scarier than the unknown?

Isn’t fear just being afraid of the unknown anyways?

So if you fear the unknown, you are just fear. 

Fear. 

Unknown. 

People always ask me what my biggest fear is. 

Bees? Darkness? Isolation? Not having control? Pain?

Well, bees, eh. Darkness, a little. Isolation, I’m used to it. Pain, doesn’t phase me. 

Not having control. Unknown. Bingo. 

Fear. 

Unknown.

As of now, there isn’t anything that is concrete. Everything is up in the air.

Everything is unknown.

Most of the questions I answer are answered with I don’t know. 

So if everything I am is unknown, doesn’t that mean my biggest fear is myself? 

Absolutely. 

My body. 

My brain. 

My pain. 

My spine. 

My dancing. 

My emotions. 

My health. 

Me. 

My Blog Absence

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

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

Other Sites:

conquerchiari.org

asap.org

Determination is Everything

My title for this post honestly speaks for itself... I have shocked myself with how well I am handling everything and for how far I have come in only almost four months. This update will be short and random mainly because a lot of little things have happened along the way.

First off, I got a tattoo! It's small, but I love it. Purple ribbon with my diagnosis date and it couldn't be more perfect :)

On Sunday I move back up to Seattle to start my semester at Cornish and I honestly thought I wouldn't be able to make it back. Yes I am having an alternate schedule, but I will be in the environment that I love so much and that's all that matters. I beat the odds because of my determination.

Since I'm moving back soon, I have looked back at my past summer, of which I don't remember most of, and am shocked. It's almost impossible for me to think about where I was at in May to where I am now. I am honestly a completely different person. I have always had a huge work ethic, but I have learned to push through so much more than I thought possible. If I could make it through these past four months, there's nothing I can't accomplish. The world is at my feet, my cards have been dealt, and now I get to see what I can do with it.

Now that I am able to comprehend more and think about my future with Chiari, I have seen how much I personally want to educate the world around me about this chronic condition. I really want to use my blog as a way to connect people together and to help people understand my journey. As of late, I have been thinking that after I graduate with my BFA in dance from Cornish, I have a strong urge to get my Masters in Communications and possibly become part of a non profit organization or maybe even start my own to get more neuroscientists to research Chiari. Again, this is all in my dreams, but it's SO important for me to do this. Dance is for sure my calling, but I now need to share that calling with this new one. This dream is looking even brighter now because South Sound Talk, a local website newspaper focused on positive news/stories, is writing an article on my journey and I am beyond blessed for this opportunity! (More info. to come in the later weeks!)

Alrighty, last but not least, yes I am going back to school, but September is a HUGE month! September is Chiari awareness month! In fact, Niagara Falls will be lit up purple on September 3rd in honor of Chiari awareness month, and that just so happens to also be my 20th birthday! It was meant to be! September will also be the month that my article comes out (which I will of course share here) and that will be the jumpstart to my path of educating others. For the first time in a long time, I'm excited for what is to come. Thank you all for coming along on this journey with me! #CMstrong

3 Months & Counting

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 put on a nerve pain medication called Gabapentin and just today my doctor told me to up my dose, so I'm hoping that will help my pain management even more. I'm only expected to stay on this medication until the end of September so I'm happy about that since there are side effects that I don't fully appreciate. Safe to say my road to surgery recovery is going as well as it can be.

It is now August 8th, meaning there are only three weeks until I move back up to Seattle to begin my sophomore year at Cornish! I'm really happy that I am in good enough shape to return as that was one of my worst fears going into surgery. For the fall semester however, I am not fully enrolled in all of the dance classes that sophomore's usually take. I will only be enrolled in modern and composition but I am hopefully able to audit classes as the semester goes on and I continue my recovery process. I still am taking 16/18 credits for the semester, so in that case I'm getting ahead with my academic credits needed for my BFA with taking Lighting Design, Creative Writing, Anatomy, and Epidemiology. It was hard mentally to have to drop all of those dance classes knowing that I didn't meet my personal goal of being able to return back full time, but if I think about it, that was a bit unrealistic. I keep forgetting that I am only 3 months out from surgery, but for only being 3 months out, I'm doing really great. The thing that breaks my heart the most is that I do not get to perform in the fall semester show of Cornish Dance Theater. I was looking forward to that the most. I'm really trying not to think about it, especially thinking about show week. At the same time though, so many of my Cornish friends have reached out to me reminding me how much love surrounds me, and that's what is going to keep me going as I ease back into my dancing. In the grand scheme of things, I'm so blessed for the opportunity to still be in the amazing environment that Cornish is while I am continuing my recovery process and trying to figure out how to balance my passion of dancing with a serious chronic illness. I am beyond ready for the challenge of a lifetime.

Today I spent a good hour contacting five different medical places in Seattle for appointments for when I move back up at the end of this month. It was absolutely exhausting, and I realized that this is probably what I'll be doing for many many years to come. I look back and remember the times when the only appointments I had were check ups for my pediatrician, dentist, and eye doctor. I miss that a lot, and I won't ever take my health for granted. I'm so grateful for the huge team of medical personnel, family, friends, and mentors to get me through all of this. #CMstrong

10 Week Update

Safe to say that it has been a while since I wrote. Many things have changed and improved, but a lot is still the same. On June 30th I had my check up with my neurosurgeon to see how I was doing. They weren't pleased with my lack of movement in my upper body and neck, so I am now in physical therapy and massage therapy. I am also now on gabapentin which is a nerve pain medication to help with my sharp throbbing pains coming from my scar and going to the front of my head. So far all of those things combined seem to be working, but I know I still have a long ways to go, especially with Cornish only being less than six weeks away.

Six weeks. That's six weeks to get as close as I can to where I was before things became bad. Six weeks to prove to myself that this has all been worth it. Many people I've talked to keep thinking that surgery was a cure for my Chiari..

 Chiari Malformation is not curable. 

I'm getting to the point in my recovery when I start to figure out what my surgery did for me. Before surgery, my spine was extremely stiff. When physical therapists messed around with it, nothing would really happen. I can definitely say that it is not as stiff anymore, but I am still unable to have a high arabesque or combre derriere. That's okay. I can work around that. I now have all feeling back in my right side of body and have full use of my hand once again and that was definitely the most important thing to be fixed. Everything else, all of my other symptoms, they have seemed to stick around. The fatigue, chronic pain, occasional times where it's hard to swallow, nausea (although it has significantly reduced), loss of balance (mainly when attempting to dance), and the obvious terrible head pain. I'm still in recovery mode and I have to keep reminding myself that. Things could continue to get better, but I know that no matter what, I will be sick until the day I die. That sentence sounds harsh, but reality is harsh, and there's no way around it.

I will always have high spirits and positivity, just because that's how I am and that's how I was raised. However, it's okay to be scared. It's okay to literally want to cry every second of a bad Chiari day. In all honesty, the main reason I didn't write a post in awhile was due to the fact that I didn't want to type out how I feel or face reality. It took a long time to be "okay" with the fact that I'm "forever sick," and I still have a far ways to go, but the drive I have, the drive that I know deep deep down is in me will pull me through. Chiari sucks, being constantly sick sucks, but once I can fully 100% accept that this is reality, the more I can focus on where I know I need to be. Yes I will set unrealistic goals for myself and yes I may overdue it every once in a while (...or every day...), but if I don't, I will never see what I am capable of, and I will miss out on parts of life that I still, by the grace of God, get to live, even if it's not as full as I would have lived it before.

The support I receive is beyond comprehendible. Thank you from the bottom of my full full heart.

6 Weeks

Well sorry everyone for never getting around to writing my 5 week update. There was so much on my mind and I knew I should have written all of my thoughts down, but it just never happened. It's safe to say I've been struggling a lot with the mentality of my life situation. I never really knew how much Chiari would effect my daily life until now. It's crazy to think I lived 3 years with symptoms to have it all turn out to be some rare brain thing. Just my luck!

I have been nothing but positive throughout this whole endeavor which has helped immensely. I was talking to a parent of a dancer at my old studio backstage and she asked me two questions: Will I go back to Cornish and will I be able to dance again. When I replied saying that I don't know and that it's all up in the air, she felt very bad and apologized for asking those questions...but she asked the questions that are on everyone's mind and heart and the ones I tried to burry deep deep down. I have been doing my good ole research on alternate majors and schools in case that my worst fear comes true and dancing is taken away from me. It is beyond hard to even type this, but I have to face every single possibility that could happen to mentally prepare for whatever may come my way so that I can have courage when the unknown becomes the present.

I am determined. I am strong. I have to be, there is no other choice. This chronic illness that I will carry around with me for the rest of my life will not define me or take away who I truly am. I just need to figure out a new way to live. Yes, I do hope to dance once more and to return to Cornish in the fall. Honestly, after spending a full year in the most supportive and inspiring place, I can't imagine myself at a normal 4 year university. I know that art school is where I belong, I'm just hoping God agrees with me.

Physical update: I have been able to spread my pain relievers more throughout the day sometimes even waiting 8 hours to take another oxy pill. I get to drive by myself for the first time tomorrow (don't tell my neurosurgeon hehe). The biggest thing I deal with besides the pain from surgery is my level of fatigue, but Netflix and my puppies have been very great companions to me :) thank you all once again.

#CMstrong