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My Journey

Neurocognitive Testing

I got the results from my cognitive testing I did last week. My neurologist had sent me for a neurocognitive/psychological assessment. I had talked with him about having a hard time focusing, getting lost in conversations and memory issues. The testing was all day and the tests are designed to stress and push your brain.…

Simple Kindness

These last few days, leading up to this morning, I have been filled with stress and anxiety over the neurology appointment scheduled for this morning. I could not imagine how the appointment would go – whether good or bad. My prayers over the appointment have been simple. I feel like sometimes I do not even…

Speak to My Heart

There was a breakthrough this week! I am grateful to share good news! Physically, this week has been a rough one. I’ve been struggling with a migraine, nausea, head pain, numbness and tingling and a heavy fatigue. I had the infusion clinic on Monday, physical therapy and did my second round of the Emgality injection…

Stuck Between a Needle and a Hard Place

The long awaited appointment with the neurologist was earlier this week and it was a complete disappointment. The neurologist was not at all familiar with Chiari Malformation and was not comfortable treating it. She focused the first half of the appointment on all the previous misdiagnosis before I was diagnosed with Chiari Malformation, starting when…

Answered Prayers

Friends, There was a HUGE answer to prayer today!! I finally got an appointment with a Neurologist after a year-long wait! I have only been able to see a neurologist twice since I was diagnosed with Chiari Malformation two years ago, and that was after I had brain surgery. Once Chiari was the diagnosis I…

“Accidentally Switched”

Hello friends, I know it has been a while since I have posted an update. It is still a challenge to keep up with messages and reaching out, being social, but I do read everything, and I appreciate and love all of you. It can still feel overwhelming, and I tend to need long breaks…

Slow Spin

Today is my 23rd birthday.  I know God has a plan for me, but I feel so overwhelmed. There are all these unknowns and unfinished pieces spinning around me that just won’t come to a rest.  It has been a while since I posted an update because I was waiting to have some more answers.…

Waiting.

Today I started weekly IV infusions for preventative measures against the horrible migraines I keep getting. Hopefully these infusions help. It is a migraine cocktail for pain, nausea and hydration. This morning I got an email from the Mayo Clinic telling me that they received a request for an appointment with their neurological clinic. They…

One Year Anniversary!

Hello friends, It is hard to believe today is the one-year anniversary of when I had brain surgery. On one hand it feels like it was only yesterday that I was in a hospital in Colorado, and on the other hand time has felt like it has slowed, and the months have drag on endlessly.…

Answered Prayers

Yesterday, at my OHSU Neurology appointment there was a HUGE answer to prayer. The neurologist took ALS off the table! He said that theoretically I could develop ALS down the road, but that he would be shocked if that happened. Benign Fasciculation Syndrome (what they diagnosed me with there a few months ago) and ALS…

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