Then The Unexpected Happened

I didn’t see this coming

So let’s recap. I left you guys hinged on my “more painful than expected” recovery, post Cryoablation, that last week of September or so.

Though the pain never really ever dialed down, I still made the decision to proceed with work Tuesday, October the 1st. I had two appointments that day, that were thankfully slower paced, and had a little downtime in between the two as well. Thankfully, I only had two, because half way through the second, I was fighting to not convulse, due to the wasp stings and lightning. I fought the tears that masqued the level ten pain I had to hide the last 45 minutes of my work day. By the time I wearily walked to my car, completely zombie-fied, and now at 1,800 mg of Gabapentin at 2:00 p.m… I drove home on auto-pilot, walked in the door, purely mentally spaced, and physically utterly shutting down. My husband unloads my car, and carries my bags in for me. I walk to my closet, begin to change from work clothes into my lounge wear, and I pause, somewhere in between changing shirts.

that emotional bomb that was inevitably bound to implode

Dell comes into the office lounge, where I am, sits down in his office chair, and begins to recap a little of his day. My back is to him, as I’m scanning my closet for a comfortable shirt to wear. I hear him talking, but I’m so mentally drained and emotionally overwhelmed with the fight that my body is fighting right now, I become numb. I hear him talking, but no concise words – just his voice. The air even seems hollow. Every external sensory is numb. Then, I feel it. The vortex of emotion is rising up and, there’s nothing I can do to keep it in at this point. I bury my face into my hands and squeeze out a few tears, and controlled anxious inhales and exhales. I try and hide my crying, as anyone might. Masquing it as exhaustion maybe, or just general decompression from the day. As I stood there and released the built up frustration and pain, I hear Dell ask what I might want for dinner. I couldn’t even respond. His tone was sweet, and caring – but I still couldn’t respond. Instead, I sobbed even harder. This time, not holding anything back.

Dell left the office lounge, and left me to decompress in peace, to kind of gather myself. He knew. After nearly a decade together, we know when the other needs to a minute or two of solitude, to release in our most raw form. That alone time to regroup with the King. A moment to recallibrate.

So, I prayed, and I wept what was necessary, threw a t shirt on, wiped my face, and then met Dell on the front porch. We stood there for a few minutes, and I inched closer to the warm sun still shining on a portion of the deck. We were puzzled. We wondered why my pain was still so great, especially at this point in the healing journey.

We are now at seven days. The tumors should be fully dead in three more days, can I go that much longer?

It’s early evening and we begin making dinner. I’m battling level 8-9 pain, but still carrying on, making zucchini spaghetti. Dell preparing his dinner, (for those who may not know, I follow a vegan diet, and Dell is a little more Westernized diet.) At this point, I couldn’t tell you what he had the night of October the 1st. All I remember is, making my bowl, and us sitting down to a dinner that lasted all of two minutes.

The longest night yet

So, we are sitting at the kitchen table, attempting to have a normal meal. And it hits.

In an instant, I slammed my bowl to the table and slid my chair back and screamed out. I stood up at the same lightning speed in which the nerve pain hit. It felt like a level 10 internal “Indian burn” of the entire genital area.

Dell offered to take me to the emergency room in that moment, and, I refused. Knowing what condition that I have, I figured there was a slim chance that my local hospital would know how to treat a rare case like me. There’s no way they could achieve my medical history from Emory in time. There would be virtually nothing they could do.

The failed dinner moment continues, with me in the tub now. The pain is relentless, it’s not stopping, even with the hot water. This night mimics essentially every sleepless, painful night we’ve been through since the procedure. I realize I can’t make my work day tomorrow.

The morning of October 2nd comes, and it’s not any bettter. Dell proposes emailing Dr. Prologo’s office, I do. Dr. Prologo calls me himself, encourages us to come to the emergency room at Emory at the John’s Creek location, so that he can see me himself and address the care needed. The pain was absolutely through the roof, and I knew the hour and a half car ride would more than exacerbate the nerve pain. But it simply had to be done.

So we drive, and I fight the verbal outcries that are a result of the shooting electricity and stinging pain shooting through the entire pelvic area. I silently wept in the passengers seat, half way leaned back. Dell drove calmly and steadily, despite the intensity of the pain episodes.

Finally admitted and eliminating the pain

Upon being admitted, seeing my visual pain level, and pulling my history, they were quick to help deliver much needed relief. This was my first time receiving Dilaudid. Finally, after tolerating seven days of tumor inflammation and screaming nerve pain, it was quiet. They also performed a CT scan, including both with and without contrast.

I stayed the night for pain management and observation. Twelve hours of staggered Diladid delivery began here.

I sleep pretty solidly through the night, for the first time in a week

During my night in the hospital, I remember being carefully checked on, but remember sleeping relatively undisturbed pretty much each hour. I would wake up in at least 45 minute, to hour long intervals, usually being the cause of semi dulled nerve spasms, my body needing a positional change, and a bump of Dilaudid.

The “Button” of relief

So, every eight minutes I could hit this button, and a small, pre-measured amount of Dilaudid would pulse into my vein, delivering the calm that my nerves much needed. I did spend this evening alone, as Dell had office work that needed to be done, and Tippet was back home too. But it was all okay, and we all actually slept soundly that night, despite being apart. I was finally relatively pain free, and Dell slept soundly knowing full well that his wife was the most comfortable she had been in a long time.

It’s now the evening of Thursday, October the 3rd, and Dell is now back at the hospital to hopefully retrieve me. We didn’t get clarification of discharge until 6:00 that night. My system seemed to be responding well to oral pain medication, since earlier pulling me from the Dilaudid pain pump. Myself, and my nursing team believed I seemed to be alright, and good to go for discharge.

Man was I was ready to be home.

I’m still healing

So, the bottom line is, I’m still not 100%, and may never be. It’s October the 8th, I’m officially fourteen days out from cryoablation, and still having “abnormal” amounts of nerve pain, and intense surges at that. I’ll be starting a steroid pack tomorrow morning – as Dr. Prologo believes it will help cut down on tumor inflammation. Targeting the conglomeration of nerve tumors that we did, we believe we “poked the hornets nest,”and irritated the countless other nearby tumors. We aren’t quite sure why the targeted tumors in the cryo treatment are hanging on unusually longer than most tumors do. Their death is supposedly ten days after treatment, and, well, things are…. still pretty darn active. I won’t lie. The explanation could lie strictly in the mutation. Maybe Schwannoma tumors don’t respond well to cryoabaltion. On me, it’s seemed to be the opposite of others’ success stories with this treatment.

There is a bright side, however

It is quite possible that the resiliency of my nerve tumors are just giving the cryoablation a run for its money. It’s still probable my nerves can recover tumor free, despite the latest scan not revealing any visual evidentiary proof of tumors shrinking. Time will tell.

Although my recovery is shaping up to be somewhat of this “up in the air,” and “how much longer will this take? ” scenario, there is still reason to believe that there is a purpose, for all of it.

God decided i’m the soldier for this war

Blessed be the Lord my strength which teaches my hands to war, and my fingers to fight. Psalm 144-1

Each war is waged differently. The warfare is determined by the soldier. From one soldier to another, all we can do is give God the glory, and trust that whatever pain or struggle that is needed to be endured, or the lessons that need to be learned – usually always have a greater impact on our soul than we imagined. The unforseen sticks in the spokes, mold us. The challenges, and hurdles are what tailors our character. The battles that are fought, sharpens the sword of our endurance.

Our will to keep fighting, honors the temple we are given. The determination to keep going, honors Jesus, who didn’t stop going when it came to us.

Keep waging that war my friends. If it’s the fight of your life, give it all you got.

#faithwithalimp #er #emergency #cryoablation #hospital #emory #ejch #dilaudid #tumor #schwannomatosis #nerve #nerepain #faith #drprologo #positivity #glasshalffull #psalm

Cryoablation Day

fREEZING multiple nERVE TUMORS

So Tuesday began with a lot of anxiousness, nervousness, and some mild fear of the unknown. I was more nervous about this procedure than I was for my surgery last year. The crazy thing is, there’s really no comparison between the two. The surgery that I had last November left me with a huge incision, and sliced up stomach and groin muscles that took months to heal. The Cryoablation was far less invasive, and didn’t require large cuts into my flesh. But I still couldn’t shake the emotion, or some of the worry I was experiencing. I think it’s due to the fact that I am such an odd case, sometimes boundaries are pushed, guidelines improvised, and general standards are slightly bent.

tumor destruction : COMMENCED

The entire nursing and anesthesia team that accompanied Dr. Prologo were nothing short of amazing. They were caring, thoughtful, and attentive. I really like the Emory hospital at John’s Creek, and actually, both Dell and I prefer to travel to this facility rather than downtown Atlanta. Not only is it a closer destination, but, the hallways and the rooms seem brighter. It felt optimistic. I had been nervous up to our arrival. I’m not entirely sure if my anxiousness had calmed down that significantly, or if I was mostly just delirious after not having eaten in 19 hours. By 3:00 p.m, my IV was in, I was prepped, and we were rocking and rolling towards my procedure room.

Wished it were possible to show you guys what I saw upon being wheeled into the Cryoablation room, before it was night-night time for Leslie, but, the room set up, the CT machine with all the massive amounts of gadgetry and medical staff- was pretty impressive. Did a drop link that somewhat shows part of what the procedure room looks like, but doesn’t really do it justice as far as showing what all components are involved. Who knows, might have to have another Cryo procedure at some point in my life – and I will be much better prepared, I’ll try and get an “in the moment” picture.

https://news.emory.edu/stories/2017/10/ejch_post_mastectomy_trial/index.html

completely frozen

An hour and a half, and one frozen Pudendal nerve later – I was positively freezing in recovery. I hadn’t opened my eyes yet to even know if I was in recovery. I was just shivering, somewhat hearing voices. I felt like I was half way dreaming. I barely opened my eyes, seeing dimmer lights than what I previously remembered seeing in the procedure room. Slightly confused where I was, trying to get my wits about me, I opened and closed my eyes a few more times and saw various and assorted beds, next to mine. Many different nurses, beeping machines, and then my recovery nurse, by my bed. Immediately upon my being awake, she asked me how I was, and I muttered, “I’m cold and hungry.” She quickly returned with three heated blankets, and piled them all on top of me. The weight and the warmth felt so good. She asked what juice I wanted to drink, and came right back with cranberry juice on ice, despite me still shivering, it tasted so good. Had a couple bites of graham cracker, but, made more headway with that cranberry juice than anything. The sweet beverage with the tart twang finished waking up my senses, just about every sense but the pain. That would come later.

They wheeled me back to the room I initially started in, and there sat Dell, waiting for me. I was still pretty darn cold, my guess was it was just a side effect from the Cryo. Dell kind of pulled my covers up around my neck, nestling me in more than I already was. He would gently lower my cranberry juice down to my mouth, so I could easily sip. They didn’t keep us for too long after recovery, maybe an hour or so. During that time, we did get to see Dr. Prologo before being discharged. He said he was able to successfully freeze the Pudendal nerve, and by default, about eight nerve tumors were frozen in the process. We were told that it takes about ten days for the tumors to die, and then of course, around six weeks for nerve regeneration.

Before we knew it, I was getting dressed and on my way out the door. While Dell went and got the car, the nurse wheeled me outside to meet him. Man did that warm sunshine feel oh so good.

I wasn’t really prepared for the week that followed

My assumption is that because I’m that rare case, the “day or two” down-time, really isn’t applicable to me. I had taken two days off from work, post procedure, just to make sure I would be good to go to work Friday and Saturday.

That kinda didn’t happen.

Wednesday, the day after my procedure, wasn’t all that bad. Some moderate nerve pain, nothing too crazy – manageable. I thought for sure, knowing I still had Thursday to rest and finish recovering, I expected I’d be good to go.

Then, Thursday afternoon rolled around. It. Was. Relentless. It absolutely didn’t stop. All night Thursday I screamed, and I cried. I couldn’t sit down, or lay down. I paced around the house, and I just took it. I leaned against walls, and door frames. I slouched over the bathroom counter with my head in my hands. I wasn’t allowed to soak in a tub, but I was able to shower. So, I stood in the shower, wearily leaning against the shower wall. Totally worn out and unable to move to a different position, I wept. The silent crippled tears rolled down my cheek, while absolutely blasting the areas of nerve pain with piping hot water. The Gabapentin was maxed out, the Advil wasn’t cutting it. Dell never left my side the whole time. We didn’t know what to do other than to repeat the shower thing several times. Finally, Friday morning, around 4:00, I passed out from exhaustion and pain.

It’s the weekend and i’m not working

It’s Friday morning, and I wake at 7:30. I’m groggy, sleepy, but it’s already starting. I should be already awake and getting ready for work – and I’m starting this day with 600 mg of Gabapentin, and standing in the shower. I’m exhausted, my mental and physical stamina are weak, nothing is working, and I’m not sure if I can handle an entire day of what was endured Thursday night.

At this point, I am now realizing that what I’m feeling… are the tumors dying. And let me tell you guys, it’s off the Richter scale. Through this journey, I’ve felt a lot, handled a lot, have even been able to masque a lot – but actually feeling nerve tumors die – is about the most painful part of Schwannomatosis that I’ve felt thus far.

Friday continues. It’s still going. My body is weak, my spirit is weak, the cynicism and negativity are creeping in. I’m 100%, positively limping at this point. It’s pretty low. I’m surrounded by my husband and my parents now – and I’m reminded that my endurance meter is still full, regardless of the pain, I’m reminded that I have fight left.

Let the warrior within take over

For You have armed me with strength for the battle; You have subdued under me those who rose up against me. Psalm 18:39

Friday night, I sleep.. finally.. for a good six hour stretch. Many ups and downs, yes. But there is some sleep.

Saturday, however, it was a copy and paste from Friday. The weekend continues, Sunday, pain – again. Today, (Monday).. pain, still. Honestly, some of the most intense surges I’ve felt since last Thursday and Friday, have been Sunday and today.

When able to sit, this has been me – and this girl hasn’t left my side. Whether I’m on the couch, or in the bed, this girl is close.

Keep your eyes forward

Today, I wish I could report no pain. I wish I could report that I’m “feeling better.” I don’t think anyone could have really anticipated what my post-cryoablation recovery would be like. I’m the first of my kind. Breaking barriers, and giving students a case study to read about, hey.. it’s the least I can do.

I can’t report I have less pain. Not yet anyways.

There is progress in pain, there is hope in hopelessness, and there is faith able to be found in something as small as a seed. Sometimes, that’s all we need.

Although we cannot see the future, or see God’s Plan, doesn’t mean there isn’t an awesome play out to what He’s got going for us. The road is gonna be rocky and unpredictable, the challenges will be hard, and the light at the end of tunnel is going to seem really far away sometimes, but, we’ll get there. Eventually, that long dark, twisted tunnel of surprises, moments of being lost, and times of doubt – will give way to the Glory we bring the King.

It’s easy to question, or speculate why certain people are chosen to bear an affliction. I just like to refer back to some scripture that I found awhile back, and believe that :

Jesus answered, “Neither this man nor his parents sinned, but that the works of God should be revealed in him.” John 9:3

Jesus said this, and then healed a blind man.

I believe that God works through really unfortunate, bleak places – because that dark tunnel is the perfect place for God’s Light to shine and be seen by eyes that are attuned to the dark. Will God eradicate the rest of my nerve tumors? Will loved ones with cancer and other ailments be healed? I can’t answer that.

But I can say, that it’s worth it to stay in the fight, and keep the faith. Don’t give up. Your miracle might be around the next bend.

Keep going, limp if you need to, but keep your eyes forward, dear friends.

#faithwithalimp #faith #nerves #nervetumors #schwannomatosis #neurofibromatosis #fighter #emory #drprologo #cryoablation #gabapentin #emoryjohnscreekhospital

Tears On My Pillow

Emotional Whirlwind

I think we have all been there. That mental and physical state in which everything seems cataclysmic, unsure, unpredictable. That one last emotional blow that sends your faith spiraling downhill, and you find yourself face to face with the enemy of indifference. You’re in this limbo of half numb, and half conscious. You hear voices, but not words, you’re moving, but at a subconscious level – lifeless motions all while trying to keeping it together and not break under the pressure. Waves of emotion rock you to your core and you’re comfortably numb.

Regrouping with the King

At some point, our prayers have looked like this. There’s so much we want to say, so many thoughts and feelings buzzing around our mind, and we’ve been carrying it silently for so long that by the time we get to our prayer war room, this is us. Tears are our words. And ya know what, that’s okay. Jesus knows.

Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings that cannot be uttered. Romans 8:26

This was me this past week, especially. Last Wednesday, September 18th, is when I hit my rock bottom. Wednesday morning I got landed in the E.R, with what we believe was a severe hypoglycemia attack. After explaining my diagnosis to the E.R doctor, (who actually knew about Neurofibromatosis, which is almost as rare as the condition itself,) he included an informational sheet regarding hypoglycemia and what triggers attacks. I found it eerily interesting that the page explaining hypoglycemia, and what causes it, mentioned:

If you do not have diabetes, hypoglycemia may be caused by :

A tumor in the pancreas. The pancreas is the organ that makes insulin.

Not eating enough, or not eating for long periods of time, (fasting). Severe infection or illness that affects the liver, the heart, or the kidneys.

Certain medicines.

You may also have reactive hypoglycemia. This condition causes hypoglycemia within four hours of eating a meal.

Elseiver Interactive Patient Education 2017 Elseiver Inc.

So, reading the above, the E.R doctor concluded that my “signature homemade vegan breakfast burrito,” which has been the highlight meal of my day for weeks now, consisting of at least 900 calories, may have been the cause. Be that as it were, Leslie has now changed the way she consumes calories. Small portions, more often.

However, next step? Time to get a scan of the abdomen and see what’s happening with my organs, and if there are any super special tumor friends joining the schwannomatosis party within this mortal frame I have. I digress.

In the outfield, with no catcher’s mitt, and a fast ball coming your way

So Wednesday continued. I’m home, resting, shot out on every level – and Emory calls that evening around 4:30 p.m. On the other end of the phone was an extremely nice lady, calling from the financial services department, and the call is regarding my procedure, for 9/24. She was calling to let me know that my cryoablation would not be covered by Alliant, my insurance.

In that moment, my eyes filled with tears, and my throat began to hurt as I choked back the raw emotion that was on the verge of billowing out. She was giving numbers, I barely heard them, as the emotions overwhelmed my retention ability. I kindly asked her to repeat them, and with a gracious tone back, she did. I wrote the figures down, and kept my words short, to not completely loose myself during this conversation. Her voice was kind, and understanding – it’s almost as if she knew.

We hung up. I lost it.

Talk about timing, Dell had just returned home from the grocery store, and had literally walked in the front door pretty much right after I had hung up the phone. He finds me sobbing in the office, and, as any husband would be, alarmed at the sight and confused as to what just happened. I explained it to him, we cried together, and we began brainstorming.

The cold hard truth

So, I received this news six days before my procedure. The bottom line is, Alliant, nor any other insurance companies cover this. Because this procedure is considered “an experimental treatment,” all insurance companies refuse to cover it. So, Dell and I didn’t really have a choice, we had to pay a pretty significant amount for my Cryoablation treatment.

Sometimes life throws you curve balls, hard to see, hard to catch, even more difficult to keep yourself grounded while that ball is flying your direction.

It’s hard to give thousands from your savings for something that’s not necessarily 100% guaranteed to work. Will I need this procedure again? Will I be the fluke case where there is no success rate with genetic nerve tumors? No one knows, but God does.

STEPPING OUT ON THAT LIMB OF FAITH

Sometimes you have to step out on that limb, or hang onto it for dear life. Either way, life is ever changing, always throwing surprises and challenges. Your arms may be weak, your legs might tremble – and your balance may be off, but it won’t be permanent. God conditions us through our battlefield. We each set out every day, and we fight. We fight anxiety, anger, depression, weakness, general hardship. We can’t give up, nor can we give in to the numbness we may feel.

Put on that armor, and get your head in the game.

What Satan may use to try and destroy you, Jesus is on the other side strengthening you through this pit of misery, through the muck and the mire. He knows every ounce of doubt, fear, and disbelief we experience. He knows the pain, and heartbreak, the temptation, and the silent mental agony that no human sees.

He knows, because He was there once.

What if the Lord had given up the day He was crucified? You and I – wouldn’t have the Holy Spirit to help us through our trials. Nor would we have salvation. When He was crucified, and He rose three days later, He made us a promise.

But the Helper, the Holy Spirit, whom the Father will send in My name, He will teach you all things, and bring to your remembrance all the things that I said to you. John 14:26

You can’t give up, or give in. No earthly trial or challenge, is more gruesome than what Jesus bore for us. Remember that. Remember the warrior that you are. Remember the Holy Spirit that resides within you – and know that the same power that brought Jesus back to life, is the same Holy Power that lives within the believer.

STAY THE COURSE

Keep going. No matter what. Yes, it will be hard sometimes. Yes, there will be doubt. Yes, there will be pain. Don’t let these earthly downtrodden feelings shake you of the will to push forward. Be a warrior, not a worrier.

#cryoablation #emory #drprologo #schwannomatosis #neurofibromatosis #warrior #fight #faith #faithwithalimp #nerves #insurance #tumor #nervetumor #theking #lord #holyspirit

A FROZEN MOMENT IN TIME

From relic to revolution

I’m about to embark on a pretty lightly traveled trail. Freezing tumors, instead of resecting them. Cryoablation is essentially a new age, “not even heard of,” treatment for nerve tumors.

With each day that passes, brings me closer to procedure day. A couple months ago, September 24th seemed so far away, and now, here we are, just eight days away. I’m anxious and nervous all at the same time. But, most of all, I’m hopeful. Hopeful for a new course of treatment, especially if it brings the success we are hoping for.

There has been some confusion as to this procedure “taking care of,” or essentially curing my current situation at hand. I wish that were the case, but, not with this particular treatment, this time, at least. If it brings the success of relief, then onward ho with going after more tumors!

So this time, for those who may not yet know, we are going after the tumors on the Pudendal nerve. Where is this nerve, and why are they thinking that eradicating invaders on this nerve will help alleviate some of the nerve pain I’m experiencing? Google, my friends. You can always find more descriptions, and illustrations if you’d like, but, found a basic description for you guys.

The Pudendal Nerve is found in the pelvis. It is the biggest division of the Pudendal Plexus (a network of nerves) and is located behind the sacrospinous ligament, near the tailbone. The nerve extends from the sacral plexus, through the Pudendal canal, the perineum, and the gluteal (buttock) regions. The condition known as Pudendal neuralgia can cause both bladder and anal incontinence. Other symptoms include chronic constipation, rectal pain, and sexual dysfunction.

Pudendal nerve entrapment is another form of pudendal neuralgia. This condition causes phantom pain (pain related to an area that isn’t actually part of the body) in the lower regions of the pelvis, penis and scrotum, vulva, anus, and perenium. @healthline

How’s that for a ride on the magic school bus? You guys with me now?

So, when Dell and I met with Dr. Prologo, he said that almost every symptom I reported, reflected that of the patients who had Pudendal Neuralgia. The only difference being, is that my Pudendal nerve is loaded down with tumors, emitting essentially similar pains. So, in other cases, neuralgia of this nerve can be caused by intense childbirth, or really anything that causes this nerve to take a beating, prolonged sitting (hey I do this all day imagine that) or horseback riding. Cyclists are actually known for this type of neuralgia too, which means the three years I mountain biked, didn’t help my situation any. I digress.

Some of my symptoms do mirror some of the reported Pudendal neuralgia cases, and this is probably me just being partial to the myriad of super epic nerve pain that people with Schwannomatosis feel, but, my Pudendal pain also brings awesome sensations to the table, (major sarcasm for those who don’t know me personally.) Take your pick, dull serrated knife that slowly saws its way through the rectum, periodically, or all day long, depends. Hot carving lightning, that’s a given with nerve tumors. Can’t forget the needle stake that feels like it’s wedged sideways, (this one is super special, it makes it’s iconic presence only a handful of times per month.) Oh yeah! Remember the game where you laid a pile of jacks on the floor, bounced a rubber ball near them, and picked up as many jacks as you could before the ball comes back down? Yeah. Me too. But I prefer the game go on outside of my rectum instead.

Hopefully, some of the aforementioned will be annihilated within six weeks after this procedure, which will help cut down on a lot of what I feel in the nether-regions. I will still have hundreds more scattered throughout the pelvic area, as well as the tumors in other uncharted territories, but hey, small victories right?

TAKE THE ROAD LESS TRAVELED

Is this not the coolest bridge picture? My husband took this picture a week ago on the Toccoa river. What’s even cooler is that I got to see this bridge in this moment the picture was taken.

This was my first time on Dell’s boat in our entire time together, and he and I couldn’t figure out why we hadn’t taken that kind of time together before last week, but we will definitely be making more time like this in the future! What made this little float down the river so memorable, was the moment itself. We had the time, pain was minimal, and we seized the day. The time together, with our sweet girl, was so perfect. I hadn’t been on, or near any water in two years, so this peaceful float was emotionally sweet for me.

Dell even got to fish some! This day, it was a change from the guide life. More casting, less coaching, more peace, less work – for the both of us. It was nice, it was needed. Talk about freezing moments in time… if there were ever a morning, a moment, this goes under my top ten amazing memories.

This day was too incredible to not share with you guys!

Perception is everything. Yes, the everyday downtrodden pain, stress, anxiety, worry, or whatever cataclysmic emotional roller coaster you’re strapped to right now – probably isn’t your preference, nor your forte. It may not be desirable, or fun. Embrace the ride for what it is. Learn from it, grow from it, gain strength from it.

THERE IS INTRICATE BEAUTY WITHIN THE RUGGEDNESS OF LIFE

Tenacity, courage, persistence, and the will to keep going, instead of throwing in the towel of fatigue and defeat – changes our perspective on life. Soon, we begin to see the the upcoming victory, despite each failure. Our eyes are opened to see the beauty through the flaws, and the joy through the tears that are shed. We begin to see that even though this life is rugged, and tough, it is also fragile, and oh so intricate. It is delicately laced with grace. It is hemmed with blessings, and stitched with triumph.

Praise God for all these precious moments that shape us into the warrior that Christ designed us to be.

Embrace both the ruggedness, and the intricacy of life.

#faithwithalimp #cryoablation #tumors #nervetumors #schwannomatosis #neurofibromatosis #nfwarrior #toccoariver #clackacraft #flyfishing #rescuedog #blueridge #northgeorgiamountains

High Voltage

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 latteit’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.

#blueridgedam #toccoariver #lakeblueridge

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

Silent Screams

The Loudest Silence You’ve Ever Heard

Can you hear it?

It’s silent to everyone, but positively deafening for you.

Have you ever buried something so deep, an emotion, a feeling of anger, or pain, that it just comes barreling towards you like a freight train? Whatever is buried inside you, is now roaring up within you, like the conductor blowing on the horn to get out of the way. It’s so loud that it’s paralyzing. You can’t move, you can’t think, you’re just frozen in this limbo land of uncertainty, and simply stepping off the train tracks isn’t possible. Trapped by fear, physically gridlocked, mentally restrained, verbally inhibited, whatever the situation – being unbridled and free isn’t feasible in this season of silence. So it screams within you instead.

The holding of the tongue, the releasing of the clinched jaw, and the relaxing of the fists, isn’t indicative of weakness, but more so, evidence of strength and balance. The softening of the brow, and the poised verbiage, despite the vision of the freight train coming your way, is admirable. Being positioned in a state of difficulty in which you need to maintain a graceful disposition, isn’t a bad thing. Adversity shapes us, it molds unique character that can withstand a myriad of battles and opposition.

Those of us who silently battle…. we welcome you to our turf.. for God never forsakes one of His warrior children.

For you have armed me with strength for the battle; You have subdued under me those who rose up against me. Psalm 18:39

What’s stopping you from just standing in the tracks, to actually getting on that train and driving that sucker down the tracks yourself?

Drive that thing with bravery and boldness! This locomotive ain’t run by luck, but rather by Divine Direction.

Your tenacity at maintaining composure and not breaking under pressure, is courage enough, to be your own conductor, with a little help from one pretty awesome Heavenly co-pilot, Who is guiding you on this set of unique tracks.

The train tracks of life might delineate some amount of difficulty, but that doesn’t mean you have to stand just completely in the way of the misery train that’s headed your way. As we go through life, sometimes those unfortunate, and undesirable conditions or challenges are simply unavoidable, but it doesn’t mean the season of scrutiny or savagery is permanent.

Hold the line just a little longer.

Because the next destination of your life journey just might be what makes the twists and turns, tunnels and trenches worth it.

Besides… who said we couldn’t have a little fun along the way?

Get out there and conquer! This isn’t an episode of Looney Toons, the roadrunner hasn’t left a boxcar of dynamite on the tracks waiting for you. The next bend might be a blind corner, but your Co-Pilot already knows what lies ahead. Leave the unknown to the King, and enjoy the ride!

#faithwithalimp #endnf #schwannomatosis #neurofibromatosis #traintracks #brsr #blueridge #downtown #trains #traintracks #faith

It Was a Cold Summer Day

The Nerve Tumor Journey Continues

You know what it’s like waiting in a doctor’s office. There’s always that unknown, that worry of being told something you don’t wanna hear. Especially if you’re being seen at a facility with a plethora of doctors and specialists, who specialize in weird, odd and rare things….. and you’re one of the rare things they’re seeing. You think, “What am I gonna be told?” Or it’s, “Is there even another treatment option other than what’s already been presented?”

Those were some of my thoughts going through my mind Wednesday as I sat and waited. I was to see a brand new someone, an Interventional Radiologist. Wednesday’s appointment was for me to consult with this doctor and maybe try and come up with some type of treatment/therapy to at least, if anything, minimize pain. After being referred, and having met with another Emory specialist beginning of July, an OB/GYN (who definitely told me that while surgery wouldn’t be impossible, he wouldn’t recommend it,) to go with the least invasive method possible. So, with this appointment with the Radiologist, I was expecting realtively basic results from this appointment as well… a “cookie cutter” run of the mill solution or two that might work for my rare case.

Boy was I wrong.

So in walks Dr. Prologo. From the warm friendly smile, to the eager handshake that he extended to both my husband and I, we were at ease immediately. His boisterous personality, the willingness to sit down, make eye contact, and include you in his suggested medical approach – will win you, because it did me. His approach to treatments and procedures is confident, without arrogance or elitism, but more so real, genuine, and true care for your situation. I didn’t feel like a patient, and I didn’t feel like I was meeting Dr. Prologo for the first time. He makes you feel welcome, and like you matter, like you’re part of the family!

Dr. Prologo has pioneered the study on “cryoablation interventional radiology.” They use CT imaging for precise guidance, so that a needle-like tool may locate the targeted area, and emit a freezing material, causing nerve endings to reduce pain signals. Dr. Prologo has successfully used this procedure to treat phantom limb pain, pain from general trauma, and cancer patients. Dr. Prologo is making huge waves in the realm of eliminating the need for opiods, with the application of cryoablation.

Dr. Prologo has had success with treating numerous cases of Pudendal Nerve Neuralgia using cryoablation. So, with my entire pelvic area riddled with nerve tumors, one of those places being my Pudendal Nerve… he said he can help me!

@drprologo #emory #interventionalradiology #cryoablation #ejch

After careful consideration, and a strategic method for my case, Dr. Prologo is confident that cryoablation will successfully freeze, and essentially kill all the nerve tumors on my Pudendal nerve. While Dr. Prologo has treated some Neurofibromas with this modality before, Leslie will be one of the first to undergo the freezing of several, several nerve tumors on the Pudendal Nerve, the goal is to freeze every single tumor on that nerve.

Dr. Prologo explains that the cryoablation needle freezes the tumor, and essentially the nerve it sits on. The tumor withers and dies, and the nerve regenerates in a month or so, tumor free. Temporary numbness, in exchange for a pain free Pudendal nerve. WOW. I’m still in shock.

While the Pudendal nerve is a small dent in my tumor riddled mess, it’s at least one area that will be pumping out less pain, cutting down on my pain level altogether. I feel confident that with the success rate of this treatment, we will have no reservations about proceeding with the freezing of other problematic nerve tumors sometime in the near future.

God truly has a gem in this man, as he is making such a positive wave in the medical field. By providing this revolutionary optimistic approach for patients who have found the world of medicine to be daunting and discouraging, we now have hope, peace, and excitement for better days ahead. His goal is to reach as many people as possible, so that they know there are other options out there. While sometimes surgery is necessary… the times when it’s not necessary, and you are actually able to avoid copious amounts of slicing, large gory surgical scars and heavy duty pharmaceuticals, such as opioids and other drugs that so many millions of Americans take on a daily basis, why not?

Whether you’re a cancer patient with debilitating pain, fighting Neurofibromatosis, or you are battling other painful medical conditions, don’t lose hope, as this may be the miracle treatment for you too.

“The Pudendal Nerve is hypersensitive but it had always been impossible to get to it. With the cryoablation probe, we thought we could do that. And we were successful, Prologo said.”

“We freeze the pain source. Patients who could only take opioids before are now free of those with cryoablation,” he said. “Patients with years of pelvic pain are cured with one treatment.”

Dr. Prologo
#ejch #emory #johnscreek #drprologo #cryoablation

So, here’s to new beginnings! This is such a huge leap in progress and positivity for such a bleak situation.

I was clueless until Wednesday. He asked me something that day that no one had before, during this whole Neurofibromatosis journey of mine. He said something to the effect of, “What was your plan if you weren’t gonna go forward with surgery? How far did you think you could go?” And I remember hesitating.. because I truly didn’t know. I didn’t have the answer. I didn’t have a plan of action. I just told him that I was gonna wait it out, “limp” it down the road as long as possible. I of course hoped the tumors wouldn’t grow any more than what they already had, but, if it was necessary to cut them out, then I would just deal with the numb skin, and sensory loss, and/or whatever other insane side effects would be from tumor removal. It would have been an absolute last resort given the area.

I never in a million years dreamed that I would be a candidate for such a treatment.. because I didn’t know it was even possible. Especially for me. I was ecstatic when he confidently smiled, and said: “I think I can help you.”

It was a throw my head into my hands and praise Jesus moment if there ever was one.

There’s never not any hope. Bloom where you are planted. Plow forward in diversity. And keep the faith, even if you’re only able to limp it along. God will do the rest. All you need is a tiny seed to grow something.

Grow something beautiful.

#cryoablation #endnf #nfwarrior #nervetumors #ejch #emory #drprologo #faithwithalimp