Tuesday, May 9, 2017

Why I'm Getting My Leg Chopped Off

If you had the option of facing something tragic, as some might call it, that you knew 100% would happen, would you face it head on at the exact time and place that YOU get to decide?  Or would you wait for it to happen at an unknown date with unknown circumstances in the future?

For me, the answer is easy.  And frankly, I think the picture speaks for itself. (Disclaimer: I know it's ugly, you ain't gotta tell me that lol.  If it makes you feel better about yourself to make fun of it, go ahead.  But the jokes on you because it will be gone soon anyway and you'll just look like an a-hole.)
Back when I was going through all of my leg surgeries, especially the exhausting leg lengthening process, I would ask my doctor, "Why can't we just cut it off?"  I was 100% serious but was always told no.  Every time I was told no, I found myself at another surgery to "make it better."  It's obvious when looking at the picture that my growth was stunted.  The surgeries corrected some of the deformities but definitely not all.  So for the past 10 to 15 years I became complacent.  My mindset became, well, if this is all the better it's going to get, then I'm going to make due with what God's given me.  After my last leg surgery, the only time I would go to the doctor was when something was wrong, like an infection or needing a script for a new leg brace; never to better my mobility.  I stopped going to physical therapy because I was told there wasn't much else they could do for me.  I stopped going to my orthopedic surgeon because there wasn't a surgery that could fix my leg or knee.  They couldn't magically make my muscles work or build me a knee that would help me walk again.  I'd get multiple infections each year, get antibiotics, heal, and repeat.  It was a vicious cycle, but when you're told this is the best you're going to get, you deal with it.

I found myself not wanting to walk places for fear of another infection or breakdown of my skin.  I felt that, the less I walked on it, the less chances I had of causing damage to it.  As you can tell, it's  fragile and small.  So fragile that I often wondered how I'd survive being an old lady.  What would my future self look like if I used it too much?  That mindset overcame my daily life.  I better not walk to meet my friend for lunch.  I can't go to that truck show because my leg won't withstand walking all day.  I know my daughter would love for me to take her to the zoo but, I better not because my leg could get infected from all that walking.  Then one day, like I said before, something clicked.

If you haven't read my previous posts, this is where it all comes together.  I came up with the idea to  build my lifted truck for disability awareness which then turned into a SEMA build.  Once that light switch flipped on for me, from hiding my disability to sharing it and not caring, I started to become more outgoing.  I started sharing my story on instagram and following other amazing people with disabilities who's stories are beyond incredible.  Athletes with one leg or missing two legs, doing 1000x more than I can do WITH my dead weight of a leg.  Running, jumping, swimming, skiing, climbing mountains, MY GOSH!  It's like my eyes were opened to a whole new world of possibilities.  Endless possibilities.  I wanted that or at least to have the chance at that.  Why couldn't this be me??  It could be and I just needed to find out if it was possible.

My husband and I went to a charity car and truck show for Cardinal Glennon Children's Hospital.  The hospital where my tumor was removed for the first time and where I was referred to my NYC doctor who saved my life.  It's seriously like it was so meant to be that I can't even wrap my brain around it sometimes.  We were standing around talking and I noticed a young woman who was sitting by herself looking bored.  She had no arms, a prosthetic on one leg, and coloring with her other leg.  I watched her amazed at how she could do that while here I am complaining that I can't run.  I HAD to talk to her.  I probably said to Don at least 5 times, "I want to talk to her.  I'm gonna go talk to her," before I had the courage to do so. 
Tisha
Jerod




















I walked over to her and introduced myself.  Her name was Tisha. The first thing she asked was if I had a prosthetic leg (I was wearing jeans).  I told her it was just a leg brace, but I've always wanted to get it cut off and always have been told no.  She told me her husband, Jerod, was an elective amputee and a prosthetist, then waved him over to talk with us.  The three of us shared stories of how we became disabled, how we've been treated because of our disabilities, and all the things we can and can't do. Jerod explained that he was an elective amputee himself and how it was the best decision he's ever made.  We discussed how he came to his decision and how it's made his life so much better.  He told me how he is a prosthetist and asked me if I was considering amputation or if I ever have.  We talked for a long time about how I've become complacent with where I was with my leg and brace and how I've realized there's so much more that I could be doing.  He said if I ever really wanted to talk about it or look into my options, he knew a few doctors who would be willing to discuss amputation with me.  He also said if there were every any questions I wanted to ask that I could message him any time.  The next day I added him on facebook and haven't stopped messaging him questions ever since.  Literally almost every day with leg questions lol.  He's probably so annoyed but never comes off as being annoyed and answers everything with so much detail and is always so helpful.   

It was about a month or two of asking questions on a daily basis that Jerod gave me the name of a doctor who is also an elective amputee.  I went home one day and told my husband, "I've been talking to that Jerod guy we met at the car show, asking questions about amputation and prosthetic legs.  I think I wanna cut my leg off."  I explained how it would help and what it would entail.  My husband's response, "Alright, let's do it. I'll support you with whatever you want to do and I'll be there for you 100% with whatever you need."  He never once said it was a dumb idea or that I was crazy.  From day 1 he's been an amazing supporter and I am so lucky to have him as a husband.

From there, I setup an appointment for three weeks out with the orthopedic surgeon.  The day of the appointment I walked into Dr. Bradley's office a nervous wreck, fearing that he would either tell me that I wasn't a candidate for amputation or that he wouldn't be willing to remove my leg.  They took x-rays and then brought me back to the room. 

Dr. Bradley walked in, he had a limp just like me which made all my nervousness go away.  He started asking questions about my extensive history, discussing how the bottom half of my leg was freezing cold and purple, discussing the lack of sensation in the leg, etc.  He then asked, "So what do you want to do?"  I responded, "I wanna cut it off.  I know some day I'll eventually have to so I want to do it on my own terms.  It's caused me so many infections and it hurts, even though I don't know where it hurts.  I worry that one day I'll get an infection so bad and the antibiotics won't work anymore.  I just want to know if you'll cut it off and that I'll be better off without it."  He responded, "I think what you're doing is smart.  This thing isn't doing much for you and the chronic infections are only going to continue.  You probably get infections and don't even know about it.  Just based on your x-rays alone, you're walking bone on bone with your knee.  Your bones are so deformed from all of the surgeries which is why you're getting all of the infections and your knee doesn't work.  You can run from this all you want but it will catch up to you someday to where we're not only trying to fight off infection in your leg to save the leg but then we're worried about saving your life.  It's best that you do plan this so that you aren't doing this in an emergency situation because you will for sure lose this leg one day.  And like you said, do it on your own terms.  You're gonna be so much better off without it and I know you'll do great."  He then drug his pointer finger across the top of my thigh and said, "I'd remove it about 5 inches above your knee."  I had high hopes that I would be a below-the-knee amputee because there are so many more options with legs and mobility.  Deep down I knew my knee didn't work but my head was hoping otherwise.  I've only cried three times throughout this whole process and that was one of them.  It's like I couldn't stop.  He stood up to give me a hug and said, "I know it sucks.  Trust me, I know exactly what you're going through.  I lost my leg when I was 10.  My parents gave me the option of either more painful surgeries or remove it right then and there.  I chose to remove it and I don't regret it at all.  I can do so many things without it and I know you will too, a lot more than you are now.  You'll do great I have no doubts." 

So here I am today. The domino effect of each of those events leading up to where I should be.  I never thought a year ago that the idea of building a truck for disabilities would lead me to a truck show which led me to Jerod who is now my prosthetist, who led me to my doctor that will be cutting off my leg.  I also never thought that the idea to help change other people would end up changing me.  Everything happens for a reason.  Trust your journey.  You NEVER know where it will take you.

Leg day is July 5th and I couldn't be more excited to start my new life.  Just watch me, I'll be running before you know it!
Team Half Leg: Jerod - my prosthetist, Don - my amazing husband, and Dr. Bradley - Leg Chopper




Friday, May 5, 2017

DisXAbled Beauty SEMA Build


You're probably wondering, "What does a lifted truck build have to do with this girls leg or tumor?"  For me, everything.  It's a symbol that show that even if you’ve been through some really hard times, you can still have an amazing life, be proud of who you are, and go on to do big things.  Here's how it all started....

I’ve been disabled basically my whole life (if you haven’t read the back stories, those are in the two previous posts).  As soon as my surgeries started, my leg deteriorated and I started wearing a leg brace and walking differently.  I’ve been made fun of more times than I can even remember.  Kids in school can be really cruel.  I remember in middle school back when I wore shorts, a group of kids were sitting at a table across from me whispering about my leg calling me “gimp ass” and “retarded” making fun of how I walked. It hurt.  It wasn’t like I wanted to be that way.  I had no control over it.  From there I started covering it up and hiding it, wearing only pants for years, even in 100 degree summers.  Not just kids though, adults too.  I’ve found with some friendships, relationships, or even family, the first blow is always a shot at the disability.  I dated a guy in college for like a month.  After we stopped talking, I saw a conversation on his facebook between him and a friend, “At least you got rid of the girl without a leg.”  Hysterical.  Considering I do have a leg, for now anyway.  They were total douche bags and luckily I realized it was them and not me.  The more I tried to cover it up, the worse it got.  I would park in handicapped spots at the store with a disabled license plate on my mustang.  I’d get out of the car (wearing jeans of course) and old people would yell at me, “You’re not disabled!  You can’t park there!  Those spots are for people who really need it!”  Oh because I’m too young to park there?  I don’t look disabled enough for you?  I’d lift up my pant leg to show them my leg brace and sarcastically ask them how long they’ve been able to park in those spots because I’ve had the “privilege” my whole life.  I didn’t ask for the privilege, but was born with it and it’s not from old age.


So one day, it’s like a light switch flipped.  I just got sick of how I was handling it and the way people were reacting.  So I decided to change.  I went from being extremely embarrassed about being different to flaunting it.  I hadn’t worn shorts in 20 plus years until this past year.  The minute that I changed my thinking, my life became so much better.  I found that instead of hiding it but having confidence in knowing that I am different and that’s ok, I received less stares. Less rude comments, and overall less negativity.  I went from saying I was in a car or snowboarding accident to saying I had a spinal cord tumor and now I’m getting my leg cut off.  People’s reactions went from, “Oh my gosh, I feel so sorry for you,” to “Wow, you’re brave and awesome for rocking it.”  It took me so long to get to this point because I didn’t have anyone around me who was like me or who had a disability. 


I’ve learned to embrace my differences and want to change the thinking of disabilities/disabled people.  I thought about what I could do to share that message in a big and awesome way. I decided to build a lifted truck and call it disAbled Beauty.  I planned on taking it to charity events, hospitals, truck shows, walks or runs for different fundraisers, etc.  I wanted something big that I could reach out to kids with disabilities, and even adults, and disability organizations.  I googled how to get sponsored and saw that the best way is to get a truck rendering, a plan of what your truck would look like when it’s finished.  So I went to KEG Media, a major graphic design company in the lifted truck industry, for a logo and rendering of what my truck would look like when it was all finished.  I discussed my ideas and what I wanted to do with the truck with Robbie, the owner, who then made them come to life.  I told him I wanted a logo to go along with the name and how it was important that the “dis” in disabled be crossed out.  After one phone conversation with Robbie, he knocked it out of the park.  It truly represents what I was trying to show; that having Ability is stronger than any disability. He then asked me if I wanted to build the truck to be shown at the SEMA show (the world’s largest automotive trade show in Las Vegas, NV). 
 

I feel like one of the luckiest girls to have this opportunity and am so grateful to have so many sponsors and support. My goal is to show that being different isn’t always a bad thing.  I was born to stand out for a reason and I hope to show that to others so they are empowered enough to have the confidence to be themselves. I can’t wait to do big things with this truck and I’m excited to share it all along the way.


The Aftermath

My tumor left a wake of destruction from my back down to my feet.  The radiation and the surgeries caused my spine to soften and curve, also known as scoliosis.  Not only did I have scoliosis, which is an S curve looking at a side profile, I had kyphosis, an S curve looking directly on at the back.  Without surgery, I would continue to curve over and sideways at a rapid speed.  I had excruciating back pain which they tried to stop with a full back brace.  It wasn't working so the only option of fixing it was harrington rods and a spinal fusion.  Harrington rods are titanium metal rods with hooks screwed into my vertebrae that keep the bones from moving any further.  They also fused my spine by taking bone from my hip and my butt and placing it on the vertebrae so they would no longer be able to move or curve.  Ever since the surgery I've been pain free.  I only get sore if I stand for hours at a time or walk a ton.  Other than that, the only issue I have is going through metal detectors.  I usually get a good feelsky by the TSA when going through the airport.

On top of the back, almost all feeling was gone in my right leg from the bottom of my right foot to the top of my thigh at the fold of my leg.  My right foot continued to grow improperly, curving inward causing me to walk on the side of my foot, which made it difficult to learn to walk again.  Not only was it growing inward, it actually stopped growing lengthwise all together.  Over time, my right leg would be more than 2 inches shorter than my left.  The only fix for these problems were more surgeries.


First I had a triple arthrodesis, which is breaking a bunch of the foot bones and fusing the three main joints of together with pins.  The beauty of not being able to feel your leg?  Not being able to feel much of your bones being broken after a surgery :)  What would be excruciating pain for a normal person, wasn't so bad for me.  Granted, it was no walk in the park but it wasn't the end of the world for me either.

At the same time they put the Harrington rods in my back, they broke my tibia and fibula, the lower bones in my leg, and rotated them in so they'd heal together in a straighter line with the rest of my body. All of this with the hopes with the hope that I would walk better.  They also inserted a rod and a pin to hold the bones in place until they fully healed.

As time went on, the doctor's noticed that the stunted growth of my leg was catching up to me and causing my gait to be thrown off majorly and it would only get worse.  Two inches shorter than the left leg is a lot when you're walking. At that point they decided to lengthen my right light.  I had never heard of this type of surgery before.  Basically I wore an external piece of metal on the top of my leg with pins sticking out of my skin that went into the inside of my leg.  They broke my femur in half and put it almost back together but not quite, leaving a small milometer gap.  Every day I was to turn a circular knob so that it would grow back together almost to the point of healing but not.  This allowed the bone to grow but gradually but not back together which then gave me more length.  While the idea was great, and somewhat worked, my femur was healing too quickly and growing back together.  My doctor was taking me into surgery every week to re-break the bone so I could continue to turn the knob to get more length.  It became too much for my little body, not to mention expensive, so they decided to give up on the top.  I ended up getting a good centimeter out of it which was somewhat good considering all of the problems I had with it.  I love it when people ask me if I've ever broken a bone. That ended up being 6 or more of the 19 surgeries I've had. 

While one centimeter was great, it still wasn't enough considering my left leg was still growing. They then came up with the novel idea of trying it on my lower bones. Which honestly was better than the other idea of shortening my left leg.  I can FEEL my left leg and it's my good leg.  Horrible idea which got nixed immediately.  So they did the same to the bottom half of my leg, went into surgery, cut my bones and threw a big metal halo that went from the inside of my leg to the outside with pins.  This time I had the opposite problem....my bones wouldn't heal back together.  I ended being on crutches for well over a year.  I had tiny hairline stress fractures in each of my arms because I was on them so long but refused to be in a wheelchair.  I'm a stubborn person, what can I say.
With each surgery, it became worse and worse.  Less feeling, less blood flow, and less mobility. Going from walking to a wheelchair, to a walker, to crutches, to a cane, then starting all over and back to a wheelchair again.  The less I could feel my leg, the more infections I got from my leg brace. And because I have poor circulation, so bad that my leg turns purple when getting out of the shower and is constantly cold, even on a hot day.  I'm basically like a diabetic in the sense that I don't heal without heavy antibiotics and any open sores need to be treated immediately.  It never fails, every year I will have rubs from my brace that will cause major infections.  If I don't get antibiotics right away, I end up in the hospital on heavy IV meds with a cellulitis infection.  My knee stopped working at some point during that time to where I now wear a KAFO leg brace (knee ankle foot orthotic).  I call it my leg because I can't walk without it.  When I get up from my seat to walk, I have to lock the knee joint with locks in order to walk.  When I sit down, I have to unlock them in order for my leg to bend so I can sit.  When I go to bed, I take it off but as soon as I'm up, I put it back on.  Without it, I wouldn't be walking.  So as much as I hate it, I love it and am grateful that I have it. 

I'd be lying if I said it was easy.   It hasn't been and I've had some pretty dark moments which I'll eventually share here.  I walk with a major limp but I CAN WALK.  It may not be a pretty walk and people stare and make ignorant comments that you would never believe, but I CAN WALK.  I do the best with what I've been given and I'm proud of how hard I've worked to get here. This how I became who I am and I wouldn't trade any of it for a normal life either.  I've learned through all of this that you can either sit around feeling sorry for yourself or you can swim through the river of shit to get to the other side and be proud of yourself for getting there. 

But my story doesn't end here.  I'll be having an elective amputation in July. I'll explain how all of this lead me to that decision next.






Wednesday, May 3, 2017

Where My Problems Began




I’m Kristy ::waves hi:: I’m a mom to a three year old (she’s a story in itself), a wife to an amazing husband who is a mechanic, a full time worker where I love my job, an avid lifted truck lover, and basically a lifetime disabled person.  I’ll share my past journey through 19 surgeries, soon to be 20, my disability experiences throughout the course of my 31 years of life, my elective amputation that will be happening here in July, and how I got to my big lifted SEMA truck build.  You’re probably wondering how it all ties together, but trust me, it does and I’ll get to that.  But first, my back story.


At the age of 5 I was diagnosed with a benign spinal cord intramedullary astrocytoma.  Wtf is that, right?  Basically, a non-cancerous blob of crap that wreaks havoc on the body.  Spinal cord tumors are rare, even more so than brain tumors.  They account for around 1 in 1,000,000 people every year.  Mine was even more rare because it grew on the INside of the cord vs. the typical tumor that grows on outside of the cord or wrapped around it.  The rarity being, I had better odds of winning the New York Lottery than having this type of tumor in the location that it grew.  The inside is worse because in order to remove it, they have to remove bone and cut into the spinal cord. 
  
At first I was misdiagnosed with night terrors.  I was screaming and crying at night from the pain being caused by the pressure of the tumor.  Because of that misdiagnosis, the tumor had grown to about the size of a golf ball.  My first operation was in St. Louis, my home town and where I currently live.  The neurosurgeon was young and inexperienced with this rare of a tumor.  He was able to get about half before he was too afraid to go any further for fear of damaging my mobility or paralyzing me.  Then he called in the big guns.  And by big guns, I mean, Dr. Fred Epstein, an internationally renowned pediatric neurosurgeon credited for the development of pioneering neurosurgical techniques to treat children threatened by brain and spinal-cord tumors.  At the time, Dr. Epstein was the only one willing to operate on me.  If you think of how far technology has come now, it wasn’t the same back then, but he helped make it better by developing technology that allowed a surgeon to remove tumors in delicate areas of the nervous system that had previously been considered inoperable.
 

I was roughly 9 when I flew to New York for the first time and my 2nd tumor surgery.  Dr. Epstein was able to get almost all of the tumor but I ended up in a wheel chair after along with a leg brace.  Over the course of recovery while learning how to walk again with limited mobility and severe nerve damage, my tumor was already growing back.  Within the next year or so, I flew back to New York for my 3rd tumor surgery where Dr. Epstein operated again.  I remember being wheeled into the operating room on a stretcher.  He stopped to talk to me and gave me a hug where I was able to thank him.  Instead, he said, “Thanks for making us both look good.”  
 
  
He would later write a book called, “Gifts of Time” about the children he operated on. There’s a chapter in the book very similar to mine, and he autographed it with that phrase.  The 3rd and final tumor surgery, he was able to remove all of my tumor except for some residue.  Once again, I ended up in a wheel chair, far worse off that I was before due to another cut into my delicate spinal cord.  I also immediately started 28 doses (my lifetime max) of radiation treatment to kill any of the cells to stop the tumor from growing back again.  Over the next 10 years there was a 30% chance of regrowth or secondary tumors, which I constantly feared, but never had and it never grew back.  He saved my life.  I had finally won. 

You’re probably thinking, “ok, so what does her spinal cord have to do with her leg?”  Well, your spinal cord is your body's central nervous system. The brain is the command center for your body, and the spinal cord is the pathway for messages sent by the brain to the body and from the body to the brain.  So every time they went into to cut my tumor out, they were cutting those messages from my brain to my leg, damaging nerves and pathways for messages to be sent to the rest of my body.  The messages that were supposed to be telling my leg to grow and how to properly grow, how to move the muscles to move or walk, telling it to have blood flow or to feel finger tips touching it, were no longer being sent or received.  Since those messages were cut off, my leg no longer worked properly.  And so began my leg troubles...
 

Kristy

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