Fear Not

Day 35. 

I love hymns and the sustaining messages they share. "How Firm a Foundation" is one of my favorites! #hydrocephalus #hydrowarrior #DaughterOfGod #HeIsMyStrength

"I'll strengthen thee, help thee, and cause thee to stand,
Upheld by my righteous, upheld by my righteous,
Upheld by my righteous, omnipotent hand."

https://www.lds.org/mu…/library/hymns/how-firm-a-foundation…

Bowling Ball Head

The Nurse called just now to tell me that my dr left to go out of town this weekend. He looked at the MRI just before he left to see if surgery was needed immediately. He concluded that I can suck it up over the weekend and that we'd come up with a game plan on Tuesday. Nurse said he acknowledged that my ventricles are enlarged, but not excessively so. But Based on our conversation on Monday, I'm pretty sure he'll do surgery because I'm symptomatic.

My friends on the ETV Facebook page think that the hole is probably still allowing fluid to flow but not as much as it should. And since many of them have had ETV revisions, I trust their interpretation of the symptoms and brain scans more than anyone else except my neurosurgeon.

Keep Calm

Whatever. YOU keep calm. Extra spinal fluid is super painful!! I've gotta give more sympathy to my fellow hydrocephalus warriors because dang! This hurts!!! Not sure when we're supposed to cry "uncle," but I'm pretty sure I'm quickly getting to that threshold... Almost 13 years without this pain. The Lord blessed us immeasurably, but I guess it's time to address this problem again. #hydrocephalus #etvfailure #headache

"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!