Hi! I know. It’s been a minute since you’ve heard from me. After I healed from the Cryoablation in September, I spent the following two months just living life. For the first time in almost a year, the insane nerve pain was semi quiet. Our assumption was that it was finally the frozen tumors dying, or at least, on their way to death. Finally. I was excited about diving into the things I’d put on the shelf. I stepped away from social media, and refocused on goals. For the first time in months, I didn’t want the mind numbing distractions that social media provides. Instead, I craved determination and dauntlessness. My social media detox was incredibly fulfilling. I was able to knock out almost my entire book in one month’s time… a book that I’ve been laying ground work for, for awhile. Now, it’s not finished – but it’s very close. Not writhing in constant pain helps for sure. But not being drenched in the drama and the superficiality of the internet, I’m convinced is a recipe for all out productivity. For those who don’t battle chronic pain – I implore you to challenge yourself to a goal that you’ve been distracted from. Sometimes I think we have a tendency to get so sidetracked by what others are doing, that silently following their walk, blinds ours. It strikes a nerve, because it’s true. Facebook father, Mark Zuckerberg, and Instagram cohorts, Kevin Systrom and Mike Krieger have done a number on us users. After a few years using their addictive platforms, they’ve got us so intertwined in the allure of followers, likes, comments and statuses that we can’t seem to lock eyes with things that have present tense, in person value. It’s sad really. When we aren’t programmed to perform for the followers, and when we don’t succumb to being forced to set up a persona that is readily and rapidly devoured by the general population … the things we could be capable of – would demolish the infatuation of it all. I’m positive.
I’ve included a sneak peak inside my book to be, release date unknown, but I can tell you it will be very soon.
FAITH WITH A LIMP- INTRODUCTION
When you’re in your early twenties, you almost have this invincible mentality – but without actually really having gone through any “life molding” so to speak. You’re bold, but yet timid when push comes to shove. You’re confident, but inexperienced. You’re daring without the guts. The list goes on. We are so sure of ourselves at such an unripened time, it’s actually comical, in retrospect. But, this was me at one point, absolutely and irrefutably.-Faith With A Limp, autobiography and motivational book
In my early twenties, I wasn’t hard-pressed. I was challenged by my job, sure. But that was about it. Like I said, I was raised with morals of course, and the discipline of exercising financial wisdom. But everything else was just a day at Six Flags for me. I considered myself a Christian, but, I was a stale one. I gave plenty of thanks for the blessings I had. I would always recognize the Lord when I was overjoyed with something even as simple as being blown away by a sunset, or some other small little blessing I noticed or received. I prayed, but mostly limited myself to the cookie cutter goodnight and good morning prayers. That was pretty much it. I never stepped outside the box of communication with Jesus. And relying on faith, or actually exercising it? I’ll be honest, I never really had to. I had seriously put faith restraints on my Christian walk. Mostly because I had foolishly convinced myself that I was fine with God just kinda riding shot gun while I drove the car. To drop even more honesty, the whole notion of “faith” at that point in my life seemed almost foreign to me, or unattainable somehow maybe. It just seemed like something that I wouldn’t ever really understand or live by, even. I think that for a lot of people, the idea of “having faith,” or living by it, isn’t ever something that’s needed or executed. They hear others talk about it, but it’s never on their radar. And I think that it’s because they simply just aren’t put in a position where leaning on faith is their only option.
I was that person. That was me. I was just drifting along, practically my whole life. My moment of humbling would come though, and really rather sooner than later.. and with it, the art of learning what relying on faith is all about. God was about to reel this soldier in.
I wasn’t totally prepared for the road blocks, twists, turns, and straight up trenches that awaited me. I would soon understand that sometimes the hand of cards we are dealt, isn’t always ideal, but it is survivable. Certainty in the journey is of course what we all hope for. And deep down, I think we crave it. Who wouldn’t want a Heavenly heads up for an upcoming problem? Wouldn’t it be great if God could send us a text message right before we get into a bad situation, warning us of imminent danger or betrayal? Or maybe give us a phone-call with direct verbal confirmation of instructions, so that we don’t doubt our next move? I think God loves for His children to fall under some pretty heinous trials, and for them to personally see a few failures. I think He allows us to have a few bad days, so we can really appreciate the good days when we have them. Without failure, there can be no measurable success. Without sadness, there can be no euphoria in happiness. Without pain, there can be no reveling in feeling good. God isn’t a bully who enjoys watching struggle and heartache. But, rather a Master Trainer, a life Coach, a Teacher of wisdom, and a Safe Haven for when the world becomes too difficult. He hones our talents through adversity. No good, or positively perfect situation could ever prepare one for the detours in life. Getting used to some speed bumps is quintessential for emotional, spiritual and physical health. A non-violent peaceful battlefield can never sharpen the skills of a soldier. And a race with no true competition, incites no incentive to plow forward.
It’s time to re frame the mind frame we have about our afflictions, struggles, and general problems. Have you ever flipped through the Old Testament? Many of those people underwent insane tests of faith, and in some pretty bleak places too. It wasn’t easy. God used some of the worst people, the weakest people, and the people that were unsuspecting and underestimated. He used them to display His mighty works. And things haven’t changed much since then, in that regard. He is still doing it today. God still loves to do the unthinkable, the miraculous, and the Gloriously unexpected. He loves getting credit for those unbelievable miracles, and He more than deserves it. I think He thoroughly enjoys the mortal metamorphosis roller coaster ride of His stale Christian child. Because, He over time, uses forces around us to reignite the faith flame. God loves the victory that defies all odds. And if you think He can’t or won’t orchestrate Divine works through you too, that’s where you’re wrong my friend.
Stay tuned for the release date, I’ll make sure to keep you guys posted!
CBD – plant based medicine
So after my dreadful overnight stay in Emory where I spent over 20 hours on a Dilaudid pain pump – I had a couple of my cousins drive all the way from Florida to personally bring me a different kind of medicine. They’d decided they had watched me be under mind and body draining western medicine long enough. They own and operate Potter’s Natural Essentials, a total CBD line. Utilizing top of the line legal hemp, they do the extraction and formulation completely in house. They loaded me down with tinctures, balms, bath bombs, and even chapstick. After a few short weeks, I felt my mind coming back to life, my body, everything. Within one month, I had completely eliminated my pharmaceutical anti-inflammatory, and had gotten my Gabapentin dosage down significantly. I couldn’t believe it. The thousands worth of milligrams of Gabapentin, lowered into the hundreds.
So this was me, around the beginning of November. Around the time I was experiencing pretty drastic relief after Cryoablation, and after a fair amount of time on CBD. I had some minor nerve pain, but as you can see…. it certainly didn’t prohibit me from capitalizing on some killer outside time with Tippet. This was one Sunday that Dell and I spent over at my parents with her. She loves it there, because not only is she completely off leash, but the play time with her Uncle Humphrey is second to none. The girl thoroughly enjoys it. And, to be honest – we do too. It’s completely fun to see her in her element and watch her just being a k9 in all her glory.
I had several off-work days that resembled this one. It was almost surreal to enjoy life again. I found myself smiling more, noticing more sunrises and sunsets. Even going to the grocery store wasn’t a total chore. I had a string of several work weeks that weren’t completely agonizing. Not being saturated in serrated nerve pain cleared the way for some optimism in my work zone. Would this continue? I would think to myself. My perspective was changing, and for the better. There was now hope, when it seemed pretty bleak for the longest time. I seriously didn’t know how I was gonna handle myself if this body positivity continued. Katy bar the door!
November continued, and Thanksgiving came around. Calm, quiet holidays are my favorite – especially surrounded by loved ones. My cousins that visited in early October, also returned for Thanksgiving! And they brought more cousins this time! The few days they were here, was incredible. Between all the family time, the amazing food, and the calm nerves – it was a Thanksgiving that I hadn’t had in awhile. I didn’t want it to be over.
December comes. I knew what I felt internally, but was in such denial – disbelief really. I hated even vocalizing it. After a week of visible twitching, audible gasps and groans, I admitted to my husband that the activity was creeping back. And in some places, it wasn’t creeping – it was positively exploding. How was this happening? With the CBD that I was shoveling in, I thought, it can’t be. But, it was too distinctive. It was definitely happening. Deep down, I knew what I was feeling. I just wasn’t ready to accept it, again. I didn’t wanna pick back up the fight I’d just put down. I wasn’t ready. I thought I was done.
gridlocked in gabapentin
I simply didn’t have a choice but to ramp up the drug responsible for crap memory and lethargy. Whoopee. The Gabapentin I’d gotten down into the hundreds, incrementally increased back up to the thousands. And that was even with me taking copious amounts of CBD.
Over the course of this month, all of the same pains I had before cryo, have returned. And they’ve brought some friends to the party this time. The entire left side of my female anatomy, and left buttock are reveling yet again, in wasp stings, hot lightning, and blowtorch. And my rectum is frequently experiencing the super special splintery wooden shank to boot. That’s not all though. Copy and paste all of the left sided fun, on the right side of my female parts, the front side too, and you’ve got a party. If that’s not overwhelming enough, both rib cages are active, some places in my abdomen, and in my spine. Dare I even admit that I fear tumors on my acoustic nerve. Feeling sharp ear pain, tinnitus, and balance worse than normal, is terrifying. Because if my head is scanned, and I’m right – I’ll be facing more than stingy appendages and bowels. Deafness is basically expected for the warriors carrying nerve tumors on their hearing and balance nerves. I’m not wishing to claim this, but I am trying to be realistic about what might be on the table for me this next year.
In just a few short days, we welcome a new year. I haven’t laid all my resolutions and goals before me just yet, but seeing a neuro-oncologist is something that’s at least on the soon-to-do list. She is someone that my medical team have wanted me to see for two years now. Dell and I are switching insurance companies this year, so that will soon be possible. We are hoping that she will be able to delve more into the mortal mystery frame that I inhabit, gather Intel, and maybe come up with some sort of game plan. If anything, maybe get a full body MRI and see where all I have tumors, and if there are any that need immediate resection or intervention.
I’m still taking my cousins CBD, because, it’s still incredible God-grown medicine that has, if anything – eliminated the need for Mobic, my anti-inflammatory. The quality and integrity of their product rings true, as many of their patients are experiencing healing and relief from many ailments. And, we aren’t writing anything off for nerve tumors just yet. There is always hope.
This mutation is a beast. An uncontrollable, unpredictable and usurping sleeping dragon. Very few things slow it down, or quieten the madness that our nerves feel. I think there are many measures that Neurofibromatosis warriors can take to help alleviate and mediate the chaos. But ultimately and honestly? I think it would require God to rewrite our DNA – to alter or eliminate the mutation entirely. I think that there many things that man wasn’t meant to understand or eradicate. And that’s okay. We were created in His image, yes. But we weren’t designed to be omniscient. And because of that, we won’t always have the answers, or the treatment. I think instead, the goal is to stretch the faith muscles and build them for the war we are being prepped for.
Stay strong my friends. Keep fighting.
#schwannomatosis #nf #endnf #cryoablation #faith #faithwithalimp #holidays #newyear #cbd #tumor #nerves #daughteroftheking
12 Replies to “Detox, and Determination”
I got the flu from my grandchildren this Christmas 🙄. The cough, sneezes, congestion, fever etc. so as I’m sitting in my chair feeling sorry for myself…I read your epistle! I was able to go to a Dr for some sort of relief but it’s slow going. If I had to face what you do daily I don’t think I would be near as strong as you. I should be so lucky to know I will see a better day soon and if I died from this, as many have in Ga, I know where I’m going. I have prayed for a miracle for you but God is the ultimate Physician. I’m bummed for you and the terrible pain you endure daily. Your testimony radiates even in your darkest of times. Just know I love you and miss your many talents. Look forward to having a paper copy of your journey ❤️ May2020 be better!! Jane Moore 12/29/19
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❤ Much love to you Jane..
Leslie, As tears are rolling down my face and saddened to hear the fight bbn is back on again I have to tell you that I love you so much and look forward to your book and of course personally autographed by you! Hope you had a merry Christmas and that 2020 brings you the strength to keep fighting and relief is once again found!
Love you more than all the stars in the sky, Aunt Pam
Sent via the Samsung Galaxy S8+, an AT&T 5G Evolution capable smartphone
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You are amazing.
Love you Leslie❤️🙏🏻
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I love you ❤
You are an amazing soldier. I know it’s not what you probably want to hear. There are times I’ve not even wanted to be a soldier in my own wars. But you shed light on His holy face through your words and you are helping others to see Christ through you. I am praying ceaselessly as are others. Revel in the sunrise and sunsets.
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I have Schwannomatosis and I feel your pain!
I’m fighting to carry on as normal as possible but running to stay still 😥
1 major surgery on my Vagal nerve down and the prospect of more surgeries looming but I’m not down and refuse to give up.
Much love to you and keep fighting x
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Ditto man! Carry on soldier 💪
Leslie, You ARE the strongest person I know..God Bless you and your lovely family.
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