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10 Week Update (Posted 7/20/2016)

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.

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