Today is two years since I had brain decompression surgery!!
It’s been a long and rough journey and still feels surreal. It’s really hard sometimes because I am so far from where I thought I would be at this point. Originally, we thought I would be back to school and work four months after surgery. This is not the life I ever imagined for myself. Sometimes, I feel so far behind where I am supposed to be in life and left behind by the world.
I am continually dealing with many symptoms that are puzzling to the doctors. So far, It has been impossible to know if it’s from Chiari Malformation itself, structural changes from surgery, or another underlying condition. Chiari Malformation is still being researched and is not fully understood.
I am still doing the weekly infusions, they seem to be helping to keep the pain and nausea down. My neurologist gave me a rescue medication for migraines. I’m supposed to take it as soon as I start to feel symptoms coming on, which can be a little tricky to notice. The rescue medication with the monthly Emgality injection I give myself have been helping.
My doctor added on balance therapy on top of neck, hip and overall endurance PT. My physical therapist is wonderful and I have made so much progress.
The balance therapy consists of simple things like holding a popsicle stick with a letter on the tip and moving it back and forth in front of my face until it’s clear. Tracing lines of an “H” with my eyes written on a piece of paper hung on the wall.
I also toss a ball in the air and have to work on keeping my eyes focused on the ball and working on catching it and switching hands. It’s working to get both sides of my body coordinated together.
It has really been encouraging to see all the progress I am making.
There are still some symptoms that are puzzling. I was recently diagnosed with Geographic Tongue. It’s is a benign condition that they don’t really know a lot about other than it’s benign and there is not a treatment for it. There is a known link to Lupus, though it’s not totally understood.
After my ENT appointment, I told my mom there had been so many “benign” diagnosis for all these random symptoms that I wonder when the dots will start connecting.
My doctor ordered an autoimmune panel to look for an autoimmune disease (Lupus). The test for ANA, which are the nuclear antibodies that are present with an autoimmune disease, was positive.
I saw my neurologist after the results and he says I should probably meet with Rheumatologist, which is a 9-12 month wait for an appointment. It’s still unfolding and I don’t know much yet. I’m still waiting and praying.
I still am having a hard time with some cognitive stuff so movies are hard to follow and sometimes reading is difficult. I’m still struggling with some short term memory and comprehending things, it just takes a little longer. The thing that has always been easy for me to follow and is always in the background is music. It’s very soothing and it doesn’t cause mental fatigue like a movie.
Many things are still up in the air and looming, but I’m still living life the best I can. I’ve been working with YoungLives and helped planned a worship night. I am going to Winter Jam this weekend with my family. My mom won two tickets to see Zach Williams and Blessing Offor next week. I am so excited to sing the songs live that have been reminding me of hope these last few years.
One of my favorite songs has been Believe by Blessing Offor. It beautifully describes the process of faith and wrestling with questions that come and lack of answers and the answers we don’t want.
So you catch me when I fall, right?
And you hear me when I call cryin’?
And you fix me when I’m broke, right?
And that’s all I need to know
So the storm is gonna break right?
And the sun is gonna start shining
And everything is gonna go right
And that’s all I need to know
But what if you know something I don’t?
What if you will something I won’t?
If you don’t give me what I want
But you give me what I need
Is that enough to
Believe, believe, believe, believe in your love?
My other song I’m in love with is Cornerstone, by TobyMac. When I look back at this whole journey I can clearly see that Jesus has been my cornerstone. The foundation that I built my life on and it has not failed me. He is the one thing that has stayed solid and unchanged in my whole life. I still have questions that I may never get answers to on this side of heaven, but I know His love for me is solid and the foundation of my life.
Lookin’ out my window, feelin’ the crescendo
Sunset on a quiet sea
Sitting with the ones that I’ll forever love
We’re waitin’ on a flash of green
And even when the nights got cold (got cold)
You have always held me close (me close)
You’re the only rock that I could ever stand on
You’re the only one for me
The sun goes up, the sun comes down
This old world keeps spinnin’ ’round
I’m here travelin’ down this long and winding road
Seasons come and seasons go
They take me high, then leave me low
But I’m still standing on the only rock I know
You’re my cornerstone
Oh, oh, oh, no matter where I go, my cornerstone