#HAM2016

Recovery Day 10

I love the Sabbath Day! Physically I've been resting all the time for weeks and weeks, but Sunday's are a more productive rest for me as I do activities that help draw me closer to my Savior. Several weeks ago, I rediscovered daily journaling as a fabulous way to process the emotional and physical health challenges with which I've been struggling. I've also been spending more and more time in the scriptures as a source for putting life's struggles into an eternal perspective.

Yesterday we learned (the painful way) that I definitely have a time limit on how long I can be up and about without my head feeling like it's going to explode. We're not sure if the shunt is draining too much or too little... The pain feels the same either way. I haven't heard it drain since yesterday morning. But maybe I just can't hear it anymore? It's all so very confusing. And it's in these moments of confusion and frustration that I remind myself that "God is not the author of confusion, but of peace" (1 Corinthians 14:33) and I turn to my Savior in prayer. And guess what? He helps still my soul every time. #BrainSurgeryRecovery #hydrocephalus #ShuntsAreWeird#SabbathDay #HeLives

Recharged

Day 49

Yesterday was such a needed day of rest! I was even able to make it to church for a little while. Unfortunately the magnitude of what's going on hit me hard and I struggled with my emotions... I thought about the miracles and blessings we've seen so far and my heart was so full of gratitude! But I also thought about the seriousness of the procedure and how it will affect so many systems in my body! And I'm still trying to be okay with the idea that I might need to be shunted again. Regardless the procedure they end up doing, I know from experience that recovery won't be easy, but it'll be better than the pain I'm in right now! I was also overwhelmed yesterday by the love of our ward members. So many of them gave me hugs and well wishes and wanted to know how best they could serve our family. I'm telling you... Our ward is awesome!

And now it's Monday and I'm recharged and ready to fight the red tape again! I'm scheduled for surgery tomorrow (Tuesday) and we want to make sure my neurosurgeon is covered as an in-network provider, but that requires his billing/insurance office to actually do their job and submit the paperwork. Once they do, I've made friends with a gal who works in our insurance company's pre-authorization department and she's ready to get the request processed as soon as she gets the paperwork from my neurosurgeon's office (which was actually supposed to be submitted three weeks ago, but who's counting??). Pray for miracles, my friends, because this could all be over very soon!

In other news... I'm a human barometer. Holy headache!

Not This Day

Sometimes I just lay around hoping that the headache will go away or that the neurosurgeon can fit me into the O.R. schedule or any of the bagillion pain management techniques/treatments will work... Oh. And the neurosurgeon is out of town until the end of next week at the earliest. My pain management doctor who helped me with my pelvic pain last year doesn't treat CSF pressure headaches. I don't see my new neurologist until Wednesday. So everything is kinda crazy!!

#ToddlerLife

Do you know what is SOOO not awesome? Having a really bad headache and sensitivity to sound and a toddler who is mastering the art of the "terrible twos." Oh! And he's sick, too. Fabulous. But never fear, because my momma is here!!! She can solve everything!

"You've Got to Go Dig Those Holes"

Two of my friends (wonderful gals just living their lives as normally as possible... one is an amazing interior designer and another is a stinkin' smart medical student) are facing upcoming shunt replacements to treat their hydrocephalus. One of them posted this meme today as she faces the very real possibility of yet another brain surgery in only so many months. The meme made me laugh at first and then I cried. 

I was living this life almost fourteen years ago and I've been serving the hydrocephalus community since 2007, raising money for research, patient education, and advocay, and helping families find hope and teams of health care professionals to help them navigate their care and healing from multiple brain surgeries. But every time I talk with my friends and their families who struggle with failing shunts and treatments, I've always had the quiet, little thought in the back of my mind, "I'm SO blessed that I don't have to deal with this anymore!" 

But today is day 24 of a never-ending headache. And other symptoms with this headache and treatments that haven't helped have us leaning toward the idea that it's probably time to rule out hydrocephalus as the contributing factor of this pain. I really, REALLY don't want this meme to become my reality again. 

We used to joke that the neurosurgeons should just create a zipper on the side of my head so that closing up my skull would be easier than stapling or sewing it up every time. (Having 23 staples removed from your head reeeeeally hurts, btw!)

Regardless the cause of this headache (I'm rooting for hormone imbalance, or some such nonsense like that), I'm praying for my friends who have faced this reality for years and years and years. Y'all are my heroes and I look up to your strength and determination and courage. 

Oh! And just for the record, people struggling with hydrocephalus often find themselves in CRAZY pain from storms like this one that rolled on through the Salt Lake Valley today... And guess what? This was the first time in almost 13 years that the intensity of my headache was in direct correlation to the intensity of the change in barometric pressure. My hydro friends in Arizona must absolutely HATE monsoon season!