
How do you begin your day?
There it is. The dreaded alarm.. the beeping that you faintly hear through that half slumber you’re still in. You reach for it, in one swift full-arm reach, the stretch to shut off the obnoxious beeping that’s now echoing inside your head. In that moment, you think, “I need to get the coffee pot going, the dog walked and fed, the kids up and showered, breakfast made, the list goes on. Your morning routine is monotonous. It’s repetitive. It’s overwhelming. It’s seemingly stressful, sometimes in the most simplistic of ways. You wonder if there is any other person out there that feels the daily chaos that you do.
Sure there are, there is always someone else, battling something different… in a different capacity altogether.
There are people who wake up with their own set of struggles, each and every day. Not one of us battles something more severe, more serious, or more emotional than the other. The internal battle is not always seen.
I can’t speak for others, but I can tell you how a person battling Neurofibromatosis begins their day.
We started our day at whatever time we got woken up with the electricity. Sometimes that’s as early as midnight, especially if we went to sleep at most people’s dinner times. We greet the day at 1, 2, 3 a.m .. whether we stay up for the day, or try and go back to sleep, we are dosing up on Gabapentin, and any other RX drug for nerve pain, in an attempt to make it through the day.
The alarm sounds, after many ups and downs that night. You’re groggy, you’re barely able to get the wherewith all to get out of bed.
You think, “Can I just take something and this lessen or do I need to have my third bath of the night… ? at 5 a.m? … no, I can make it.”
We get the coffee going, the dog walked if need be, we get our face on, get dressed, and get ready to tackle the day.
Pop another Gabapentin and grab a triple shot latte… it’s go time.
Electricity is familiar to us.
The aggressive charge of hot lightning, the sting of the pulsing waves, to the hyperactivity of the electrical currents that rip down our body parts and appendages, it’s almost like we could fake our way around engineering because we understand the shock so well.

If you want a comparsion, sometimes, the intensity of what we get lit up with, feels something like a defibrillator, but it’s targeting the nerves instead of the heart, and trust me, we’ve never felt more alive when it hits.
Water amazes me. I have always loved swimming, and if I had of been born with gills I probably would have been down with it. But, to see water generating electricity in this amazing capacity… wow. Can’t help but think to myself, and I use water to soothe, or dial down the electricity in my body.

So let the mind flow like water. Face life with a calm and quiet mind and everything in life will be calm and quiet.
Thich Thien-An
So, when writing this blog, I thought to myself… how cool would it be to be able to allign some type of 3D visual model to show those who don’t battle nerve tumors, what we actually feel…

#plasmaglobe #nfshock #electric
I almost imagine my internal shocks looking similar to this little plasma globe, I feel like if I were to place my hands over certain electrified areas, and my skin were see through, I would imagine this is what I would see. Certainly feels this defined and intense, I can tell ya that.
Do you guys remember these things? Guy by the name of Nikola Tesla invented it back in 1984.
The plasma lamp was invented by Nikola Tesla, during his experimentation with high frequency currents in an evacuated glass tube for the purpose of studying high voltage phenomena. Tesla called his invention an “inert gas discharge tube” The modern plasma lamp design was subsequently developed by Bill Parker, a student at MIT.
Wikipedia
And what a phenomenon it is.
Nerve pain shouldn’t be the only thing that sends our responsiveness through the roof, but the elation of life!

It’s living in between the shock and the smile.
The smile that you see masques the sting, the pinch, the shock…. my disguise is the same as any of yours. The shrug of the shoulder, the sarcasm downplay, the boisterous laugh – we all go there.
We all want to be normal, live normal active lives, do normal active things – sometimes we can’t. And that’s okay.
Giving all that you can, every day, in every aspect that you can humanly achieve, is recognizable, especially in the Kingdom. Choosing to not live in defeat, detectable distress, and disarray, merits Spiritual strength where you didn’t see fit, or possible. Odds stacked against you? No, dear friend, our attitude and lack of “doing” determines our success in the battle. Accept the challenge, welcome the struggle, embrace the adversity.

Let the voltage of life shock some strength into you. One unforseen obstacle, just might be the motivational spark you need to make it through the battle.
Let us live in between the electricity and the elation!
God is faithful, and He will not let you be tested beyond your strength, but with the testing He will also provide the way out so that you may be able to endure it. 1 Corinthians 10:13
#highvoltage #faith #faithwithalimp #strength #neurofibromatosis #endnf #schwannomatosis #warrior #fighter
What a message! May others read and know they are not alone. Live for the in between times and that’s ok! God will love always!
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Great message! Be blessed and you will be in my prayers!
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Blessings!
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I admire your strength; your positive attitude (because it could be so easy to crumble); your strive to make everyday count in your life; and You…❤
You are such an inspiration! Beautiful warrior. 😘 I love you sweet girl! (I know you’re a grown woman, but to us mama’s, you’re always our littles). 😊
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I love you!!! My other mama 🥰
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Every pain helps us remember our battles.. Thank you for you messages they are beautifully written..❤
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❤ love you
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❤️💕❤️💕❤️💕❤️
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So articulate. Beautifully written and beautifully fought. Well done friend.
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