Friday, January 5, 2018

11 Things I wish I knew before I had an amputation

This isn't going to be one of those "If you think you have it hard" type of posts, or even one of those whiny "poor little me" posts. It is from the heart. If you are planning on having an amputation or are recently an amputee, perhaps my thoughts on this can help you pop over some of those hurdles I faced with ease, or at least with more confidence.

Stories are best when told from the beginning. I began this journey with a lawn mower, doing fall cleanup, mulching leaves in my back yard. It was a warm day, I was wearing shorts and a pair of Crocs. No, I didn't chop my leg off - I didn't throw a rock out and break my leg. I simply stepped on one of those metal landscaping borders and it cut through my foam rubber shoe and cut my foot to the bone. It healed over, slowly (I am a diabetic) and I thought everything was fine. It wasn't. I had apparently got an infection down at the bone level. Not a nice little infection, but a really bad bug called MRSA. I found out that MRSA is one of those slow building, but insidious and unrelenting infections that almost nothing can heal. Two years of treatment, including hyperbarics and IV antibiotics did nothing to slow the raging MRSA Osteomylitis. After many discussions with my surgeon, we decided to take my foot off, however by this time it had spread into my tibia. I wound up with a below knee amputation.

I had made my decision, followed through and was determined to make it a success. But, there were things I wish I had known prior to doing it. Things that, from a first person perspective, would have made the transition easier.

  • People stare because they are curious. I used to be bothered by people staring at me, I felt like I was being judged. Over time, I learned that most people are simply curious. For one, prosthetics are not the norm. A lot of people have never seen an amputee before. Many have questions but are too afraid to ask.  If someone stares, try to keep that in mind. I cannot tell you how many times people assume I lost my leg in the war and thank me for my service. I am a vet, but I didn't lose my leg that way. 
  • Your prosthetist can be your biggest obstacle. Sometimes the first prosthetist can be someone who is set in their ways and is unwilling to try out the new technologies. My first prosthetist had over 20 years experience. I did not have the knowledge of proper types of feet, suspension or even what the process was. He fitted me with what worked for him in the past. When I found that what I had was limiting me and wanted to change it, he resisted. You can read about my struggle to get a Rush™ foot in previous posts. Experience is good, but it can make them resistant to change. 
  • Look at as many inspiring stories as you want, but put it away if it starts to make you feel bad. I have always been active, but I have not been an athlete in ove 30 years. Not since high-school football. Stories about adaptive athletes always made me feel inadequate, Like I was not living up to my potential. I have found that you have to be YOU. You don’t have to be an athlete to be active. Get out there and walk around! Grab a friend and go hiking. Take an adaptive PIYO class. Heck, just jump up and dance a little. Get your blood moving!
  • Having a good sense of humor can help you when times get tough. I have to make being an amputee fun, You never forget that you are an amputee, and that there are serious challenges to doing simple things. But you can look at the lighter side of things. My daughters love it when i do the karate kick with my residual limb... keyaaaah!
  • Carry extra supplies... everywhere. Sometimes you just have to stop, take off your prosthetic and give the old stump a little love. Lotions, a sweat rag, a few flavors of socks... all can make your day better. I carry around a 4mm Allen wrench in my wallet just in case something gets loose. Nothing is worse than being caught out and not having what you need close at hand. 
  • Confidence and a Positive mental attitude go a long way Even when things go badly, put a positive spin on it. Avoid saying things like "It always is like this" or "I never catch a break" when you feel like this, remember that you can overcome anything. I remember the first hike I took, about 4 months post op. It was super hard, mostly because I was weak from being sick for 2 years. It hurt, I was hot. My stump was sweating like someone turned on a faucet. I felt like I would never be able to do anything, but I kept repeating to myself that I could do it. I adapted, I wiped up a bunch of sweat, got going. Oh, by the way, that's the day I learned about the previos point. And the one before that..
  • Phantom pain sucks. Especially when it comes out of nowhere. I have found that mine gets worse with inactivity. I have also found that pain medication doesn't work to take mine away. I guess I am one of the lucky ones that only experience this phenomenon occasionally. I am grateful for that, especially at 2 am when the bear trap is locked on my left ankle. 
  • Weirdos are everywhere. No one warned me about devotees. There are people that fetishize amputations. They tend to pop up on all sorts of social media. I have found that blocking them, ignoring them is the best policy. I do not engage with them at all. Lucky for me, I am old and fat and have a wicked sense of humor. SMH, they are who they are. 
  • Peer counselling is wonderful. A good peer is someone who has been there, or at least understands the challenges. I am lucky that I have a couple of good friends that are amputees. I have also met a few on line, including some that are relatively famous. I discuss things in twitter and have shared a lot of knowledge. Nothing beats having someone that truly understands what it is that we are facing.
  • Magazines are a good source of information. Many are free. Amplitude and InMotion are both free magazines. They highlight new technologies, have inspirational stories, highlight life hacks and notify you of upcoming events. I read mine cover to cover every month.
  • Life can be hard at times. There are times you will get depressed and down about things. Sometimes it seems as if the world is out to get you. You cannot be all Polyanna about everything every minute of every day. Life has never actually given me lemons. It has given me challenges. Challenges are there to be overcome. Muck through the bad times, keep your head up and fight back. You can do it, when you set your mind to.

Keep your sense of humor. It will save you in the hard times. Think about all the wonderful things you will do, the lives you will touch. Keep a journal, write a blog, engage with the world every chance you have. You will be an amputee for life, there is no escaping that fact. It will define you in certain ways, find a way to make it yours, own it and keep on going. 

I honestly believe that you need to remain active. Get out of the house, move doing something every single day Be proud to be a survivor, that you are who you are. It is easy to play the victim and say things like "poor little me" but in doing that you are not going to improve, you will not grow and  you will not get where you need to be. 

 Be proud of who you are,

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