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




4 comments:

  1. Jennifer WestonMay 9, 2017 at 1:36 PM

    Hi Kristy,
    I would love to talk with you. Our stories are so similar...it almost felt like you were writing my story. Our initial problems are different, but the endless surgeries & thinking this surgery is going to be "the one" that gives me more independence,less pain, & so on. I have had 41 surgeries in attempts for less pain & quality of life...I have been an above-knee amputee since 8/2009. If you have any questions from a female's perspective, please let me know. I would love to talk with you. I still an speechless with our stories & all the similarities. I am excited for you & the next chapter of your life...a great attitude goes a long way. You can message me & we can arrange a time to talk, if you'd like.

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  2. Hi, I came across your blog from Trisha's facebook page. Your story is fascinating and thanks for making posts about it!

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  3. Kristy,
    Thank you for sharing your story. I am so happy to hear of your brave decision and the way you are embracing it. You've been through so much - I'm sure you are tired of the same cycle of events. You've been brave & strong for so long. To take this next journey says so much about your faith, positivity and depth of character. It sounds like the stars have aligned for you and provided you with answers, not to mention some new friends. I'm pulling for ya all the way. You go, girl!
    -Lori

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  4. Also came across your blog from Trisha's Facebook page (our son was born without arms, so we quickly found her and Nick Vujicic). Best of luck with the surgery on Wednesday, praying that all goes perfectly and opens a new chapter of your life!

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Kristy

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