I have not written a blog post since May 31st, and it is taking all of my energy and then some to write this one. September is Chiari Awareness Month, and it is year number two of me celebrating it, and while last year I was very enthusiastic about it, this year is different. I'm realizing how much of a grasp Chiari has on me, and how much I have been avoiding talking about how I feel mentally and physically, because I want to believe I am one of the ones who were able to beat it, but I am not. So, for this year, my Chiari awareness month will be dedicated to me facing my fear of putting all that I have been feeling this summer out there, to let everyone know what has been happening physically and mentally, and how I am using my realization of how sick I am to inspire the people around me.
Life Changes:
In July, I starting back as a permanent teacher at Elite School of Dance and couldn't be happier that I am still in the dance world. I always knew in my heart that no matter where I would end up in life, I'd always end up back home, because I knew that that was where my heart was forever. Each night I leave the studio with little realizations of why I was needed back at the timing I came back at.
On September 25th, I start college classes again at Green River College in Auburn, WA. This year I am taking all of my prereqs (only 4 classes) to go towards my application for the Physical Therapy Assistant program, but I wanted to spread them out so I didn't overwhelm myself too much too soon.
On paper it seems like I have things figured out, and for the most part I do, which I am BEYOND blessed for that I have the drive to go beyond my sickness and go the extra mile. However, I am still grieving over what I call "my past life." I avoid thinking about my time at Cornish a lot. I was living my dream... When I am up in Seattle now, I don't go into the buildings anymore. There is a block. The same goes with watching old routines that I did during my time at Elite. I know that this will get easier with time...
CHIARI SYMPTOM UPDATES
Headaches:
Two weeks before my second surgery, I have a C2-C4 bilateral rhizotomy surgery (nerve burning surgery in my upper neck for pain management). This helped immensely after I had my surgery and was healing. Unfortunately, near the beginning of July, this rhizotomy wore off. Typically these are supposed to last anywhere from 6-18months, and mine only lasted 7. I have my second procedure scheduled for Friday, October 13th. I will be getting these surgeries about every 7-18months as long as the pain continues to come back for, well, forever, but that is a small price to pay for quality of life.
I still have daily headaches. They never go away and never really have. I now see a headache neurologist at Swedish and we are going through a slew of different vitamins and medications to see which ones help the best. Nothing will help fully, but anything that helps quality of life is good.
Upper Spine:
My cervical spine muscles are pretty much a hot mess, but were much worse, so technically have become better. The back of my skull and neck, especially where my scar is, has its good days and and with pain. Often times at night I make sure to ice it to decrease any inflammation the day might have added to that area. Overall I just have to be very careful with motion in this area considering I have a lot of my spine missing.
Luckily my nerves are now desensitized enough and my muscles are less spasmed that my physical therapist can use a special device to work on my scar tissue! I was very much apprehensive the first day we worked on it due to the fact that behind the bottom of my scar, there is no bone, only brain tissue and muscles as well as whatever else is back there.
Hands & Other Neurological Issues:
The syrinx I had that went down the entire length of my spinal cord killed so many of my nerves, and really killed off nerves connecting to my hands. The strength in my hands is rapidly getting worse and I'm just rolling with it. It's hard to open bottles, pull things apart, cut things with a fork and knife, and life/hold heavy things. Sometimes when I get too fatigued, I lose control of being able to type or handwrite, but luckily technology can help get around that. I of course still have all of the symptoms from my previous blog posts, but a new one that has come up is that now I have a hoarse voice from time to time, and it is becoming more consistent. Not too much of an issue, just more of an observation. I thought it was from my asthma from all of the fires, but guess not!
Lower Spine/Perineural Cysts:
My lumbar spine is just stuck, pretty much just like my entire back and neck! I have a natural sway back so that most definitely does not help my pain level. Every night and sometimes multiple times during the day, I have to spend time lying on my back with a heating pad to ease muscle spasms and my pain level.
Perineural cysts. That is a new medical term that I have yet to say. It showed up on my very first MRI back in October of 2015 before I even knew of Chiari when I was getting check out for a lumbar spine fracture that I had. They are rare (of course) cysts that lie on my sacrum along my nerve roots, and the nerves actually go through the cysts themselves. Anyways, my doc at the time dismissed them because they were not causing any symptoms. However, I'm pretty positive that they are now. I think they have grown due to the fact that I was diagnosed with Syringomyelia and have had brain and spinal cord trauma since then. My pain is extremely centralized in that area and is a 9 out of 10 at its worst making my surgeon order me an MRI and X-rays. I will be scheduling those this week, so we will see what is up with that at a later note. Hopefully this can be dealt with in a simple way, but with my track record, that doesn't seem too promising.
Legs:
Like I said previously, so many of my nerve routes were damaged due to the fluid in my spinal cord. I have many moments throughout the day where my legs go entirely numb, sometimes just numb or sometimes numb with the painful needle feeling. Usually it's my right leg that decides to go, but my left leg definitely has its moments. Most of the time if I just look down at my leg I can go back to controlling it even if I can't still feel it, but I do often times just sit down and relax. I still can't jump very well, but I have been able to get off the ground a few times which has been exciting!
Mental Health:
I am usually all about talking on this subject, but I am very much working on this part of healing right now, as you can probably get the hint about from my intro bit/life changes bit. What I will say on this is that I do own that I have many, many, many, many problems in this area as anyone would if they have gone through all of this in this short amount of time. Even though I won't say details now, I will never hide that what I face is real, because I am a firm believer that mental health needs to be talked about more and more in this ever changing world.
WOW. If you have made it this far, thank you from the bottom of my heart. I have been trying to write this post this entire month, and it took me a good three days to actually write and post live. Chiari is real, raw, and ends on a good note for some, but leaves some fighting longer and harder. No matter how damn weak I feel, I will fight. Thank you for surrounding me with so much love and support through this life transition of mine. #conquerchiari #chiariawarenessmonth
