It is an understatement to say that things have changed since October. The past month and a half have been an absolute rollercoaster. Neurologically, I have begun to deteriorate. My muscles cramp up, are weak, tingle, spasm, pain, and dizziness has overwhelmed me. I thought it might have been all in my head (no pun intended), but it turns out it wasn't, which is kind of a relief. On December 1st, Dr. Delashaw, my neurosurgeon, told me that a syrinx has developed in my spinal cord causing even more nerve damage. This is called Syringomyelia.
Over 50% of people who are diagnosed with Chiari end up suffering from Syringomyelia as well. Typically they find the two together already coexisting and they take care of it. I remember how fortunate I felt to not have a syrinx present when they found my Chiari. I thought I beat it and that it would not come. Obviously not the case. It is considered a complication from surgery. I have read up on it and a syrinx can develop after surgery as well. Yay me! No one knows exactly why it happens and how it develops, but there are theories. All I know is that my surgeon does not want to operate yet because the risks outweigh any potential benefit. So we just wait, watch, go to physical therapy, and get treated at the pain clinic. I got answers, but no real solutions. In reality though, there isn't a true solution.
Due to all of this, I have come to the decision that I need to take a leave of absence from Cornish in hopes that I get to come back once/if I get my health back in control and can exercise let alone just move again. Even though it was my "decision," I felt forced into it. I could feel my health just screaming at me to leave, but my heart saying that it is not fair that you have to leave your dream place. The place where everything is okay and the support is never ending. I question all the time why me, and I guess anyone who has to deal with how awful this is asks themselves. I hope I find an answer at some point in my life... I hope that this leave of absence doesn't turn in to a withdrawal. I hope that my limbs and spine work again fully like they used to, and that my balance comes back.
I was on the mend. I was doing so well, and I felt good after surgery. I felt myself coming back and I felt confident going back to school. Yeah I wasn't full time dancing, but I was still dancing somewhat. That is better than nothing at all. Now I am in the nothing at all state not having dance in my life, and I have never felt so lost, sad, angry, frustrated, and scared in my life. That feeling of health coming back to me was just being a tease, and I hope the "tease" comes back but stays for good next time. There better be a next time.
Monday, December 12, 2016
Wednesday, October 26, 2016
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
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.
Friday, September 30, 2016
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
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
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
Tuesday, August 23, 2016
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
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
Monday, August 8, 2016
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
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
Wednesday, July 20, 2016
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.
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.
Monday, June 20, 2016
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
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
Monday, June 6, 2016
4 Weeks Post-Op Update
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 three weeks I have just been trying to get through the pain and keep myself from not getting too frustrated. I see now that I won't be able to be as adventurous and as carefree as I used to be. I have to be mindful of how I live each day from start to finish because I know that if I push myself too much, I won't be able to do all that I want to do and I will be paying for it the next day. If anything, this diagnosis has taught me to love every minute of every single day and to live more simply. Yes there will be good days and bad days, days where I do end up going over my limit and days where I can't see to think positively. I am prepared for this now, at least I think I am!
There is a really great article/theory for helping others understand what it is like living with a chronic illness and pain disorder. It's called the spoon theory. Below is a link to the awesome article.
Have a great week!
http://www.butyoudontlooksick.com/articles/written-by-chris . . .
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 three weeks I have just been trying to get through the pain and keep myself from not getting too frustrated. I see now that I won't be able to be as adventurous and as carefree as I used to be. I have to be mindful of how I live each day from start to finish because I know that if I push myself too much, I won't be able to do all that I want to do and I will be paying for it the next day. If anything, this diagnosis has taught me to love every minute of every single day and to live more simply. Yes there will be good days and bad days, days where I do end up going over my limit and days where I can't see to think positively. I am prepared for this now, at least I think I am!
There is a really great article/theory for helping others understand what it is like living with a chronic illness and pain disorder. It's called the spoon theory. Below is a link to the awesome article.
Have a great week!
http://www.butyoudontlooksick.com/articles/written-by-chris . . .
Tuesday, May 31, 2016
3 Weeks & 1 Day Post-Op Update
Well it's been 3 weeks! This past week I have been able to be up and around more. I have been able to run errands with my mom and have felt good enough to actually put nicer clothes on. We are trying to wean me off my oxy and slowly but surely it's working. My stomach currently hates me so I'm really trying to stop the oxy to hopefully help with my discomfort.
In all honesty, the challenges I have been facing this week are more mental/emotional then anything else. It's really tough seeing all of my friends go out and have fun adventures and be able to do normal things. I'm not a person who has ever not been doing something. I can't drive, I can't hike, I can't dance, I can't do any of the normal things I could do in the past and it's driving me absolutely crazy. I'm also just now having the realization that this surgery might not even be successful... Only about 40-50% of patients find complete relief and that really freaks me out. To know that I am going through all of this pain and sickness and it might not even be 100% successful is really hard. I'm naturally a very positive person and I have been throughout this journey thus far, but I did have my break in that positivity a few days ago. It was bound to happen anyways. I prayed extra that day. God has been so good to me and I just have to have faith in Him to keep lifting me up. Thank you so much for the constant prayers and support. I can't be any more blessed :)
#CMstrong
In all honesty, the challenges I have been facing this week are more mental/emotional then anything else. It's really tough seeing all of my friends go out and have fun adventures and be able to do normal things. I'm not a person who has ever not been doing something. I can't drive, I can't hike, I can't dance, I can't do any of the normal things I could do in the past and it's driving me absolutely crazy. I'm also just now having the realization that this surgery might not even be successful... Only about 40-50% of patients find complete relief and that really freaks me out. To know that I am going through all of this pain and sickness and it might not even be 100% successful is really hard. I'm naturally a very positive person and I have been throughout this journey thus far, but I did have my break in that positivity a few days ago. It was bound to happen anyways. I prayed extra that day. God has been so good to me and I just have to have faith in Him to keep lifting me up. Thank you so much for the constant prayers and support. I can't be any more blessed :)
#CMstrong
Thursday, May 26, 2016
17 Days Post-Op
Hello everyone! I have enough energy to write a mid-week post :)
Yesterday I had my two-week post-op follow up appointment up in Seattle. Everything is looking good and normal. I have weird sensations all around my head and upper neck since my nerves are waking back up again. It is definitely the most interesting thing I've yet to experience! It feels as if the right side of my head is bigger than the left side, but my mom swears it isn't haha. After my appointment I was pretty darn exhausted. We left the house around 8:15am and got back at 12, so that was four hours of sitting upright, and I had never done that before. So I was in a bit of pain for a few hours that afternoon/evening but felt better after 7:30pm. Monday and Tuesday I definitely had struggles with my pain levels. I'm really hoping that that is now in the past. I'm feeling pretty darn good at the moment and am REALLY hoping today stays being a good day and that my recovery just goes up from there. Thank you for all of the continued support and love! #CMstrong
Yesterday I had my two-week post-op follow up appointment up in Seattle. Everything is looking good and normal. I have weird sensations all around my head and upper neck since my nerves are waking back up again. It is definitely the most interesting thing I've yet to experience! It feels as if the right side of my head is bigger than the left side, but my mom swears it isn't haha. After my appointment I was pretty darn exhausted. We left the house around 8:15am and got back at 12, so that was four hours of sitting upright, and I had never done that before. So I was in a bit of pain for a few hours that afternoon/evening but felt better after 7:30pm. Monday and Tuesday I definitely had struggles with my pain levels. I'm really hoping that that is now in the past. I'm feeling pretty darn good at the moment and am REALLY hoping today stays being a good day and that my recovery just goes up from there. Thank you for all of the continued support and love! #CMstrong
Monday, May 23, 2016
2 Weeks Post-Op!
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 say that I was pretty scared to see how I ended up feeling the rest of the day because I didn't want a repeat of the past Friday. My mom took me out to TJ Maxx and even though we were only out for about an hour, it was a great first step to feeling normal again. I then continued that trend of going to a store in the morning with my mom on Thursday and Friday and felt very good about it all. In the afternoons, I would relax on the couch, ice my incision, and often take some really amazing naps! This pattern of activity has really been working out for me and helps control my pain. The thing I have been struggling/getting irritated with lately is my incision itself. It is starting to scab over and becoming pretty darn itchy. I've also been having a hard time with laying comfortably. My neck and the back of my head are obviously pretty darn sore, but I just haven't found the perfect combination of pillows and blankets to help me out, so hopefully that gets resolved soon!
I feel extra blessed reflecting on the past week I've had. My diagnosis and surgery has taught me a lot about myself and my strength and character, but it has also reaffirmed my love for the simple aspects of an every day life. I am beyond glad that I was able to show up at the dance competition my old studio attended and was able to watch them dance on the stage that my roots were built on. The hugs and surprised faces of seeing me up and out in public gave me just that much more strength to power through my bad day and good days. Thank you all for your continued love, good thoughts, and prayers. #CMstrong
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 say that I was pretty scared to see how I ended up feeling the rest of the day because I didn't want a repeat of the past Friday. My mom took me out to TJ Maxx and even though we were only out for about an hour, it was a great first step to feeling normal again. I then continued that trend of going to a store in the morning with my mom on Thursday and Friday and felt very good about it all. In the afternoons, I would relax on the couch, ice my incision, and often take some really amazing naps! This pattern of activity has really been working out for me and helps control my pain. The thing I have been struggling/getting irritated with lately is my incision itself. It is starting to scab over and becoming pretty darn itchy. I've also been having a hard time with laying comfortably. My neck and the back of my head are obviously pretty darn sore, but I just haven't found the perfect combination of pillows and blankets to help me out, so hopefully that gets resolved soon!
I feel extra blessed reflecting on the past week I've had. My diagnosis and surgery has taught me a lot about myself and my strength and character, but it has also reaffirmed my love for the simple aspects of an every day life. I am beyond glad that I was able to show up at the dance competition my old studio attended and was able to watch them dance on the stage that my roots were built on. The hugs and surprised faces of seeing me up and out in public gave me just that much more strength to power through my bad day and good days. Thank you all for your continued love, good thoughts, and prayers. #CMstrong
Wednesday, May 18, 2016
9 (10?) Day Post-Op
Well hello everyone. Most of you guys have an idea of the things I have been going through the last five days or so via the quick Facebook updates my mom and I do here and there, but in this post I'll go more in depth about what was happening and into my personal thoughts throughout this experience of recovery thus far.
I left off with it being Friday and me going out to Oliver's adoption. It was so important to me that I went to it, but it wasn't the best idea for me. I was in a lot of pain the whole rest of the day and it wasn't being able to be controlled well. Saturday was a bunch of the same deal. Suffering with intense head and neck tightness with the sharp surges of pain throughout the muscles that were effected by the incision. I went to bed Saturday night with the hope that Sunday would be a much better day, but Sunday was ten times worse. The sharp surges were never ending and I was unable to relax and breathe through them since the pains were so piercing. I was more nauseated than normal that day but I later found out why when I threw up intensely. After I puked, my mom called the on call neurologist at Swedish to make sure I was okay and to see what next steps to take. He believed that the reason I threw up was from the amount of pain I was in and told my mom to keep me at the highest dosage for my narcotic and to email my surgeon's nurse personally. I email Chelsea, Dr. Delashaw's nurse, and she ordered me more nausea medication and prescribed me the same muscle relaxer that I was taking in the hospital.
Once I had all of those medications in my system, by Monday mid-afternoon I was feeling more under control. I wasn't a fan of the fact that I was relaying on medicine to keep me going, but I'm telling myself that it is what it is and it will be better soon.
On a side note, it's been really awesome being able to hang out with my mom and just relax all day. I've been really good about saying positive thoughts in my mind, but today it became a bit harder to consistently think happy thoughts. I won't go into to much detail, but I just hope I have the continued support I currently have all throughout the summer. It's going to be a tough emotionally and physically.
I left off with it being Friday and me going out to Oliver's adoption. It was so important to me that I went to it, but it wasn't the best idea for me. I was in a lot of pain the whole rest of the day and it wasn't being able to be controlled well. Saturday was a bunch of the same deal. Suffering with intense head and neck tightness with the sharp surges of pain throughout the muscles that were effected by the incision. I went to bed Saturday night with the hope that Sunday would be a much better day, but Sunday was ten times worse. The sharp surges were never ending and I was unable to relax and breathe through them since the pains were so piercing. I was more nauseated than normal that day but I later found out why when I threw up intensely. After I puked, my mom called the on call neurologist at Swedish to make sure I was okay and to see what next steps to take. He believed that the reason I threw up was from the amount of pain I was in and told my mom to keep me at the highest dosage for my narcotic and to email my surgeon's nurse personally. I email Chelsea, Dr. Delashaw's nurse, and she ordered me more nausea medication and prescribed me the same muscle relaxer that I was taking in the hospital.
Once I had all of those medications in my system, by Monday mid-afternoon I was feeling more under control. I wasn't a fan of the fact that I was relaying on medicine to keep me going, but I'm telling myself that it is what it is and it will be better soon.
On a side note, it's been really awesome being able to hang out with my mom and just relax all day. I've been really good about saying positive thoughts in my mind, but today it became a bit harder to consistently think happy thoughts. I won't go into to much detail, but I just hope I have the continued support I currently have all throughout the summer. It's going to be a tough emotionally and physically.
Friday, May 13, 2016
Day 4 Post-Op
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 remember a thing. (YAY)
When I woke my throat was pretty darn sore from the breathing tube that was put down there and I had an oxygen mask and I became really confused. Once I came to terms and they checked my vitals I went up to my private room. My doctor who performed the surgery said that it went so smoothly that I didn't even need to be in the ICU for the night which made me one happy camper! Once I got to my room, my assigned nurse for Monday, Ann, gave me some very ver nice medicine and called my family in. I was in a very decent amount of pain, but morphine and oxycodon were most definitely doing their job. I also throughout that first day and night got a muscle relaxer and a nausea tablet. Monday night wasn't too bad, but Tuesday was definitely my worst day.
Oh Tuesday.. My pain was very hard to control. It was also the first time I tried to walk with the PT, and they also took my catheter out. I also really wasn't eating much. I had a bunch of visitors that day and I felt so bad because I could hardly keep my eyes open. My mom was right: the second day is definitely worse than the first. That night I woke up about every hour and had to make the trek to call a nurse, get up to go to the bathroom, and then try and get comfortable all over again. It sure was a doozy.
Wednesday was a 360 degree turn for me. I was walking better, I was more alert, my pain was in control for the most part, and I wasn't as unbalanced. When Dr, Delashaw made his rounds to see his patients, he said I was doing so good that I could go home later that afternoon, if I was feeling up to it. CRAZY AWESOME. Hospitals aren't all that fun, so even though I was scared to leave, I was discharged at around 2:30pm after getting my own neck brace and walker. That night at home I still woke up often in the middle of the night, but sleep just felt better being in my own bed without a ton of IV lines everywhere. Then on Thursday, I was feeling pretty darn good. I started to become pretty itchy on my head, but that's just due to the fact that my bald spot is growing back hair. It was a pretty chill day with pain in controlled and I had a decent night's sleep!
I woke up this morning (Thursday) feeling pretty darn good for just having major surgery. At 9am, Oliver was going to be officially adopted by the Strode Family and I desperately wanted to go. So my mom and I went and all was fine and then I get inside and its super noisy and my head begins to go nutty. I felt awful. I sat through his beautiful adoption in the courtroom and then went straight home. However, my mom needed to go Target and I thought I would be good to go to hold onto the side of the cart and walk around. Turns out that was a bad mistake and I am paying for it as I type this out. My incision site keeps having surges of pain and my entire head in general has a bit of built up pressure. Clearly I overdid it with my activities for the day, so no more for the next few days at least! (The hot weather definitely doesn't help me out either.)
I'm sorry it took 4 days for me to write an entry, but from here on out I should be better at it :) thank you all for your positive thoughts and prayers! #CMstrong
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 remember a thing. (YAY)
When I woke my throat was pretty darn sore from the breathing tube that was put down there and I had an oxygen mask and I became really confused. Once I came to terms and they checked my vitals I went up to my private room. My doctor who performed the surgery said that it went so smoothly that I didn't even need to be in the ICU for the night which made me one happy camper! Once I got to my room, my assigned nurse for Monday, Ann, gave me some very ver nice medicine and called my family in. I was in a very decent amount of pain, but morphine and oxycodon were most definitely doing their job. I also throughout that first day and night got a muscle relaxer and a nausea tablet. Monday night wasn't too bad, but Tuesday was definitely my worst day.
Oh Tuesday.. My pain was very hard to control. It was also the first time I tried to walk with the PT, and they also took my catheter out. I also really wasn't eating much. I had a bunch of visitors that day and I felt so bad because I could hardly keep my eyes open. My mom was right: the second day is definitely worse than the first. That night I woke up about every hour and had to make the trek to call a nurse, get up to go to the bathroom, and then try and get comfortable all over again. It sure was a doozy.
Wednesday was a 360 degree turn for me. I was walking better, I was more alert, my pain was in control for the most part, and I wasn't as unbalanced. When Dr, Delashaw made his rounds to see his patients, he said I was doing so good that I could go home later that afternoon, if I was feeling up to it. CRAZY AWESOME. Hospitals aren't all that fun, so even though I was scared to leave, I was discharged at around 2:30pm after getting my own neck brace and walker. That night at home I still woke up often in the middle of the night, but sleep just felt better being in my own bed without a ton of IV lines everywhere. Then on Thursday, I was feeling pretty darn good. I started to become pretty itchy on my head, but that's just due to the fact that my bald spot is growing back hair. It was a pretty chill day with pain in controlled and I had a decent night's sleep!
I woke up this morning (Thursday) feeling pretty darn good for just having major surgery. At 9am, Oliver was going to be officially adopted by the Strode Family and I desperately wanted to go. So my mom and I went and all was fine and then I get inside and its super noisy and my head begins to go nutty. I felt awful. I sat through his beautiful adoption in the courtroom and then went straight home. However, my mom needed to go Target and I thought I would be good to go to hold onto the side of the cart and walk around. Turns out that was a bad mistake and I am paying for it as I type this out. My incision site keeps having surges of pain and my entire head in general has a bit of built up pressure. Clearly I overdid it with my activities for the day, so no more for the next few days at least! (The hot weather definitely doesn't help me out either.)
I'm sorry it took 4 days for me to write an entry, but from here on out I should be better at it :) thank you all for your positive thoughts and prayers! #CMstrong
Sunday, May 8, 2016
Just About Surgery Time!
Wowzers. It's officially the day before surgery. I thought this day would never come. It sure has been a rough and busy 10 days since I've last written!
I officially moved out of my dorm this past Wednesday. That Wednesday I also woke up with a nasty cold (SOS!!!). Wednesday was of course the 5 day mark meaning I wasn't able to take most medicines... So here I am 5 days before surgery having to battle a lovely cold in time for surgery with no medicine...eek! Luckily on Thursday my mom found a few meds I could take, so that plus sinus rinses have been helping. It didn't really hit me that surgery was so close until I realized I was actually finished with my freshman year and that I was at home for four months. I quickly realized that this surgery was all too real. Yesterday we started preparations as a family. My parents cleaned the house, I started using this cream to prevent infections, and we packed hospital bags. Swedish sent me a 20 minute video presentation about anesthesia that I had to go through and after I finished that, full blown panic. I know that my odds are very good since I'm young and healthy, but it's just a rough procedure and of course it's normal to be scared.
My surgery check in time is 6am and who knows when I will actually be taken back to the OR. The procedure should only take a few hours or so, and then I will be spending the rest of the night in a room in the ICU to my knowledge. I'm not exactly sure how many days I will be spending in the hospital, but it's two days minimum. My mom will be updating through Facebook and I will update on the blog and my personal social medias when I come around. Visitors will not be able to come on Monday, but Tuesday limited visitors are allowed if I am doing okay. So this will be the last post before surgery!
It has been a rough few months, but really a rough few years for my health. The Chiari is linked to so many of my previous health problems and I am so thankful for answers and for being able to get my symptoms relieved (even though I'm scared to death). I really want to give a huge thank you to my family and family friends for supporting me through all of these trials and endless doctors appointments. However I also want to thank my amazing school, Cornish, and the awesome people there. It is extremely challenging to deal with something this big when you are away from home, and the friends, peers, teachers, and staff that surrounded me daily were such a huge help on this journey. Not one day passed where I wasn't taken care of, asked how I was, or given dozens of hugs. I couldn't have gotten through without my amazing team of friends and loved ones. You guys are my rock and will continue to be through surgery and recovery.
Thank you all and happy surgery!!
#CMstrong
I officially moved out of my dorm this past Wednesday. That Wednesday I also woke up with a nasty cold (SOS!!!). Wednesday was of course the 5 day mark meaning I wasn't able to take most medicines... So here I am 5 days before surgery having to battle a lovely cold in time for surgery with no medicine...eek! Luckily on Thursday my mom found a few meds I could take, so that plus sinus rinses have been helping. It didn't really hit me that surgery was so close until I realized I was actually finished with my freshman year and that I was at home for four months. I quickly realized that this surgery was all too real. Yesterday we started preparations as a family. My parents cleaned the house, I started using this cream to prevent infections, and we packed hospital bags. Swedish sent me a 20 minute video presentation about anesthesia that I had to go through and after I finished that, full blown panic. I know that my odds are very good since I'm young and healthy, but it's just a rough procedure and of course it's normal to be scared.
My surgery check in time is 6am and who knows when I will actually be taken back to the OR. The procedure should only take a few hours or so, and then I will be spending the rest of the night in a room in the ICU to my knowledge. I'm not exactly sure how many days I will be spending in the hospital, but it's two days minimum. My mom will be updating through Facebook and I will update on the blog and my personal social medias when I come around. Visitors will not be able to come on Monday, but Tuesday limited visitors are allowed if I am doing okay. So this will be the last post before surgery!
It has been a rough few months, but really a rough few years for my health. The Chiari is linked to so many of my previous health problems and I am so thankful for answers and for being able to get my symptoms relieved (even though I'm scared to death). I really want to give a huge thank you to my family and family friends for supporting me through all of these trials and endless doctors appointments. However I also want to thank my amazing school, Cornish, and the awesome people there. It is extremely challenging to deal with something this big when you are away from home, and the friends, peers, teachers, and staff that surrounded me daily were such a huge help on this journey. Not one day passed where I wasn't taken care of, asked how I was, or given dozens of hugs. I couldn't have gotten through without my amazing team of friends and loved ones. You guys are my rock and will continue to be through surgery and recovery.
Thank you all and happy surgery!!
#CMstrong
Friday, April 29, 2016
10 DAYS
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
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
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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