As I sit here in the airport waiting for our flight, I am experiencing the one thing that can make a 4 hour flight next to impossible to handle. The fear that wells up inside, the pain that cuts like a knife at lightning speed, only to subside as fast as it attacks, is taking over my thoughts.
How will I handle sitting for that long, with this kind of pain?
To everyone I’m with and everyone around me I look like nothing is happening. It can be so easy for someone to judge how I’m handling being an amputee…if they only knew what was happening to my body right now!
If only they knew that a foot I no longer have, even 5 years later, is experiencing a knife-like stab that cannot be explained.
We amputees deal with this. Maybe not everyone has them like this, and for most of us it only comes on this horrendously once in a blue moon….but when it does, it’s like nothing we’ve ever experienced.
I grimace out of nowhere as my husband catches a glimpse of my face and gives me a sympathetic look. He can only imagine.
I try to ignore it but it catches me off guard and takes my breathe away.
Where did this come from, all of a sudden? What was I doing the day before, did I overextend myself? Did I sleep in a bad position? Who knows.
I usually use distraction to get through this, but to have to get on a plane knowing I’ll be sitting in one place, only to be caught in my own head, leaves me anxious about the flight.
I hope it goes quick.
Sleep? Nope, it won’t allow me to relax enough.
I will sit and try to be still, but I will wince and my knee will jerk out of control and out of the blue.
Only time will tell how this trip will go but I am not looking forward to this flight, and being away from home.
When this has happened before, it was 4-5 days of being in intense pain, not able to sit still and not being able to sleep. I can only hope that it doesn’t take that long this time as our trip is only 4 days.
What I do know is that as I get busy and lean into other activities and seeing family and having fun I tend to forget the pain, and then I realize it’s gone as fast as it came on.
I can only hope for that.
But what I am sure of, like all things in life, this will not last and good times are on the horizon. I must weather this storm, like so many others I have experienced since becoming an amputee.
I am stronger.
I am a warrior,
And I will break through this pain to the other side.
As an amputee I have no other choice and I refuse to be a victim.
I choose to make the most of ALL situations and not let this determine my happiness.
Today, I come to you from a place of weathering the storm. Today, I have seen my freedom of mobility threatened and then restored. Today, I want to talk about Freedom.
Hello, and I apologize for being absent for so long. As you know 2020 has brought many challenges to everyone and it seems to have kept me so busy that I hadn’t gotten back to my blog writing in a few months. A ton has happened since I last wrote about my hiking expeditions I was having all summer long, so please forgive me for being long winded.
A few months ago, probably around the time that I last wrote, I was blessed with getting fitted for a brand new skin fit socket. My residual limb had changed so much that I no longer fit in my socket from February. And as with every socket, my prosthetist, Randy, humors me with the freedom to design it (even though I make it challenging, he complies- I secretly think he loves the challenges). That alone, gets me excited for my new socket. I make my own vinyl decals, go to my automotive paint guy, Scott, and pick out my dazzling paint and bring everything to Randy, then I impatiently wait for him to create.
This was my newest socket, BEFORE I started to feel the intense pains. Lookout Mountain, Phoenix
When everything is ready I go in for my fitting and then leave with my shiny, new leg. It’s like my birthday or Christmas every time. If you saw my video on the creation of this socket, you already knew I got a new one just a couple of months ago. If you didn’t get to see this video I made, you can check it out Here. I’ve stated that I believe Randy works miracles with every fitting, it’s true, however even he can’t predict how my tissue will behave inside these fits after I beat the heck out of my leg with all I do. Something that I have been fighting off and on since January was a pain on the back of my residual limb whenever I went out walking hard or running for long distances. It was frustrating, even though I knew I was in the best shape of my life, I was unable to log more than 2 miles without having the mental, physical, and emotional battle of fight through pain. So…..
I went to see my doctor who performed the amputation, worried that I had a neuroma (a big bundle of nerves that gets banged up and pissed off every time I work out). He sent me for an MRI and sure enough, there was one on the back of my limb! Here’s where things take a turn for the worse.
But first, a little back story for you all. Before my amputation in December 2018 I had 8 years of surgeries on my knee and tried everything for pain management. My final strategy, to reduce pain, was inserting a neurotransmitter under my skin on my lower back that would continually send signals to my brain that there was no pain. It didn’t totally work for me but I knew amputation was on the horizon and it is considered the #1 pain relief management tool for amputees (especially if you’d like to be off opioids and pain meds).
For me to get an MRI they had to do it a little differently since I have this in my body. When I went it for the MRI I had to turn off the neurotransmitter for safety reasons. This is the first time it’s been turned off since my amputation. Well, needless to say, it HAD been working to subside pain, because I now was feeling phantom sensations I hadn’t before. Once I was done with the MRI I was able to turn it back on, however, it didn’t seem to effect me right away so I continued to feel the buzzing and irritation of the phantom sensations. At night I couldn’t sleep because my “foot” wouldn’t stop tingling and at times would make me jump, repeatedly, as if my “foot” was being stabbed! Not only that but I also began to get incredibly sharp, stabbing pains in a whole new location, on the inside of my “knee” where I don’t even have a knee. I tell people that it feels like someone taking a knife into my leg, and with every step I get stabbed again, and again, and again. However, it wasn’t every step. It would hit me here and there, then I’d be fine, turn a corner in my kitchen and get my breathe taken away as it attacked me once again. I became gun shy with every step, I couldn’t do anything, I couldn’t even bring myself to going to the grocery store. I felt like a prison in my own mind.
Most of you probably wonder why I would even put on my leg, in the first place if I was feeling these pains, and I would tell you that I wanted my FREEDOM and I wasn’t about to give it up. This pain wasn’t going to dictate my path. I wouldn’t cave and become weakened by this “phase”. Unfortunately, though, I wasn’t able to get out and walk, hike, run, anything! This was killing me! Randy and I got together and talked for a couple hours about what was happening. I showed him my problem areas and he came up with a plan to elongate my socket a bit to give room at the end of my limb. He wanted to wait, though, for the outcome of the MRI so he knew exactly what we were working with. When you are feeling these types of pains and fears, every hour, every day feels like an eternity. Now I had to wait for appointments and results just to move forward. I had no idea how long I would be dealing with this problem. To say I was in a bad place would be an understatement.
As suspected the MRI came back with an obvious neuroma exactly where we thought, but still had no answer to the sharp pains on the inside of my limb, in an area that wasn’t even there anymore. My doctor sent me to a plastic surgeon that works on nerve pains. He knew exactly what my issues were, told me that he can help but I would have to be out of my socket for 3-4 weeks to heal. Ugh!! I know in the long run this is better for me but I am NOT good at sitting around, plus the idea of another surgery really isn’t they top of my list of things I can’t wait to do….AGAIN!
Once I let Randy know my results of my MRI he told me he’d have a check socket ready for me to try out. I went in 2 weeks ago to try it on. I was, at this point, broken. I hadn’t done much of anything, physically, for over a week and had dealt with a ton of pain. Well, let me tell you, I stand by my comment that I think Randy uses magic to make his sockets because as soon as I put it on I felt great! I was a little leary, knowing that walking gently on a check socket, between parallel bars is different than me taking off on a 2 mile, fast paced walk, so Randy casted up the “joint” and said I could take it home and try it out for a week. I had never done that before, with a check socket, and was very excited to take it out for a spin, so off I went, with a new lease on life. To say I was excited for this opportunity was an understatement.
My check socket with casting material around the end for added support.
When I got home, do you know the first thing I did? I grabbed my backpack and took off for a long, hard walk, to really test the fit of this new socket. I put in 2 miles and had ZERO pain!!! That weekend I did another 2 miles, then went on a 2+ mile hike. I got on my scooter and cruised around, as well. NO PAIN! I had my freedom back, and it felt great! I went out everyday for some sort of exercise and was thankful for my mobility once again. Ahhh, freedom!
Out hiking with my check socket on. A smile on my face the whole way! This changed everything for me!
Freedom. What’s it mean to you? For some of you reading this, you too, are an amputee and can totally relate to the freedoms I’m talking about. The freedom to move whenever, wherever we want without limitations or needing help. The freedom of living the life you’d once had or want to have. The freedom to show everyone that you are NOT disabled, but just as abled as you ever were. For some of you, it means something different. Freedom of choice, freedom from addiction, freedom from abuse, freedom to be who you want to be. In the end freedom feels good. And once we have experienced freedom then we want it all the time, never to return to what was holding us back. And that’s where I’m at, making this decision to lose some freedoms, in the short term, in hopes that I will regain it all back for the long haul. The uncertainty of surgery and how this could effect my limb, and having concerns for set backs is on the forefront of my mind. Am I right in going through this yet again? And I thought I was past all of this! HA!
Well said, Albert, well said.
Freedom is so important to our mental health. It can make us wake up in the morning ready to take on the day or put us in a downward spiral if it is taken away. It’s amazing how much I took my movement, as an amputee, for granted and how much being active has meant to me. I am truly blessed with an amazing medical team around me, and how they all take my life and my happiness upon themselves. But, I know many of you don’t have that support. I know that life tries to knock you down, but you must fight for your life, happiness, freedoms. You are the only one who controls that. You choose to ask for help when needed or not. You can choose to grab life by the horns and embrace what has been thrown your way or not. Whatever you choose to do, just don’t give up.
As I write this I am in my old socket and feeling the pains resurface, praying they don’t become unbearable again. As I write this I am about three days until my new socket is ready! Three more days!! Woohoo! I’m excited about having the better fitting socket back and getting back to my freedom of movement. Until then I must remain patient, stay positive, and remember that this too shall pass.
The Limb Center. These guys are amazing. Today I give back the check socket, make a few minor adjustments to it, and show Randy where I want ALL of my decals. Randy West patiently trying to fit my designs on so it looks aesthetically pleasing.😏
As for the surgery, I’m about 100% on board for having it done because those nerves aren’t going away and will only cause more pain and distress later on for me. I am currently waiting on scheduling, with the tentative plan to have it done before the end of the year.
Never quit. Getting outside is good for the mind, body and soul.
As we come into the holiday season, I hope you all are doing well and able to find joy in the little things, exercise the freedoms you have, and are surrounded by loved ones. Remember those who struggle during this time and lend a helping hand. There’s nothing more rewarding than giving of yourself, even during your own trials. And if you’re reading this and are the one who is struggling, know that I am praying for you.
Be on the lookout for my new socket posts, and check out my Instagram angie_heuser for daily posts on what I’m up to. And I will end on this….
Above all else, laugh! Laughter is music to the soul.🥸
“Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain.” -Richard M. Nixon
“It’s not the mountain we conquer, but ourselves.” -Sir Edmund Hillary
Beginning the climb of my highest mountain thus far, as an amputee Mount Humphreys, Flagstaff, AZMy hardest metaphorical mountain I had to climb, to date. Above knee amputation December 19, 2018
There are many types of mountains we all have to climb, or will climb, or be forced to climb in our lifetime. We are never alone in that. We all will be faced with the question, “What’s your mountain?”, and at some point we will need to face that mountain and answer the question. Each of our journeys are unique, too, albeit, similar at times, but they are our own, so we can never really learn from someone else’s “climb”. The timing may be different, the weather, your age, or attitude will make it impossible to replicate someone else’s climb. Why, do you ask, am I stating this obvious notion? As an amputee I see many other amputees who are looking to others for help, and that’s good, unless it creates a feeling of being “behind” the norm or creates a feeling of sadness and depression because the thought is, “I’ll never get there”.
This journey is mine. You can learn from things I have seen, gone through, and felt, but you will never have the same experience that I have had. I, too, became caught up in wanting to be where other amputees were right from the get go, only seeing their successes but not how much time, energy and attitude they had put into their “skill”. It was maddening! I had to tell myself, a highly competitive individual, to stop comparing and wishing for what they had achieved. I had to set my own course, take hold of my journey, and find my very own mountain to climb…….and you know what??? I AM TRULY HAPPY!!!
This is my life, my journey, my mountain. No one can claim it, no one can take it from me, and I can compete all day long with myself to be better than I was yesterday. It is liberating! It is freeing! It gives my competitive nature a huge rush! I am grateful for my decision to amputate. I wouldn’t go back to where I was: NEVER! But, (of course there’s a but) not everyday is roses. If anyone tells you that, not just another amputee, but ANYONE, then they aren’t being truthful. With mountain climbing, there are set backs, there are valleys. Those valleys can be hard and you can feel like you’ll never see the top… but you will, I promise. The valleys are where you find out who you are and what you are made of. It’s where your grit and determination are found. No one grows with success. It’s in failures and setbacks in which you will grow; mentally, emotionally, physically. With valleys come a new day to try, and to climb. When you push yourself you’ll realize one day you are at the top, you made it out of the valley and climbed your mountain, oh, and on that day, your view will be SPECTACULAR! You’ll have earned that view, and there is nothing more exhilarating or rewarding than that.
So, enough metaphors, right? 😉 I want you to know that I hear you. I hear how tough life is right now, and I am here for you. I feel an obligation and a joy, in helping those who are navigating this new world like I am. Do I have it all figured out? Absolutely not! But I am willing to walk the path with you. We can learn from each other. We can pick each other up, dust each other off and begin again. We weren’t made to go through life alone, we are creatures who thrive with community and partnerships. No matter where you are on your journey, there is someone looking to you to get to that next milestone, or point, in their own life. Be brave, be bold, be honest about the bumps and bruises, and please, be REAL!
I have spent the past 2 months pushing myself to hike, which is quite a path as an above knee amputee. I have found very rocky trails that have challenged me. It began with making it half way and turning around, to making the whole loop of 4.5 miles, to trying to push myself to achieve my highest elevation hike AND my longest. I didn’t start with Mount Humphreys in Flagstaff. I started with putting one foot in front of the other. Just walking down to the end of my block was hard and felt like torture, in the beginning! Now I can hike up and over boulders for 6 hours! This took time, determination, attitude and practice! You WILL get there! You just need to figure out what it is you want to achieve and go for it.
Oh, did I tell you? You can create your own mountains! I love the idea of putting a challenge in front of myself. That’s what keeps me going. Actually, I can recall at one point in time that I became really sad, during this journey of mine. I had done everything I set out to do in my first year of being an amputee, it was amazing but then I felt I had nothing else to prove to myself or others. Being as competitive as I am, I felt like I had lost my purpose, my drive, my “what’s next?” It was not a good time for me, but I didn’t allow myself to stay there. I began creating new goals, I set new mountains out in front. I began to create a regimen for myself and found a purpose again.
….and I have never looked back!
So, what’s your mountain? How will you attack it? Who do you have in your corner, helping you, supporting you as you take on the challenge? I’m here for you! I’m in your corner. I’m routing you on, because I know you can achieve anything you put your mind to complete.
Seize the day! Carpe diem…. go get the mountain!!
Heading up Mount Humphreys Flagstaff, AZI got to my highest and longest point here for a hike. 3.1 miles up, 1,611 feet elevation change and we had to head back down due to a storm rolling in! Lightening strikes here are prevalent. Rain started, and I had to carefully maneuver down slippery rocks and roots. It took me a total of 6 hours to complete 6.2 miles but the joy was exhilarating!!
“Today is your day! Your mountain is waiting, so….get on your way!” -Dr. Seuss
I am excited to share with you an original article I wrote on hiking as an above knee amputee, published by Living With Amplitude magazine. I have spent the past 2 months finding new climbs and challenges in Northern Arizona, Utah and Idaho. Check out the link below for the article, published on July 22, 2020, in their online magazine.
Munds Mountain Wagon Trail near Sedona, AZ My partner-in-crime, Erik, and I on one of the most intense trails I’ve done yet (99° didn’t help the situation either)! …but the views!!😮
I sit here in my ocean blue Jeep Rubicon, warm air blowing in through the open windows, outside of my prosthetist’s office, waiting with bated breathe for my appointment time. Today is a day I’ve been looking forward to for over a year! However, I am cautious. Over the past 8 years of injury, surgery, more surgeries, blood clots and an amputation I have learned a lot, and to have patience and be careful what I wish for are just some of the lessons. Today I am going in for my skin fit socket! For those of you who are not familiar with amputation and amputee living, I will explain.
The Limb Center where my prosthetists make my life so much better!
When you first get a socket, after stitches are out, you are swollen and tender, so your socket is larger to fit your limb comfortably. However, as you wear your prosthesis more and get back to exercising, your limb begins to shrink. Your muscles atrophy and in my case I was losing a lot of weight, too. I was having to get new sockets made every 2-3 months! Under the socket I wear a thick liner which I roll onto my limb which enables me to slide into my socket and create suction, which keeps it in place…until it doesn’t! My leg would naturally shrink because of all my activity so I would have to take it off and add “socks” over my liner to thicken up the fit so it would keep the suction. Everyday, throughout the day this would be my routine. As it would continue to shrink I would have to wear two or three socks at a time, and that’s when we would know it was time to make another cast of my leg and create a new socket, smaller and better fitting.
Randy and David and my new skin fit leg!
Along with those trying times of figuring out the right thickness needed for me to feel good in my socket, and changing the thinkness throughout the day, my routine also consisted of washing the liners every night. EVERY NIGHT! I’ve been doing that for over a year now. After taking my leg off at the end of the day I would make sure I washed the liner so it would be dry by morning to use again. At first I thought, I have to do this for how long? But like everything else, I got a routine and it became second nature.
So that’s a little bit about my life as an amputee, now back to my cautious anticipation. When I first came into my prosthetist’s office back in March of 2019 they said that with my activity level they would like to see me get into a skin fit socket as soon as possible but we would have to wait for the changes in the limb to stop. I was told it would take about a year to get there. Well, here I am outside waiting, 1 year and 2 months later, to get my skin fit socket!! I can’t wait to see the design I asked for and feel the fit, but I am cautious. You see, I know that, like my first time putting a socket on, there are growing pains. I had rashes and bruising for several weeks when I first started wearing my leg-with the liner. Now that my limb is use to the liners, as much as I am so excited for this more intimate fitting socket, I know that there will be some skin issues that I’ll have to deal with and push through. I know it’ll be an amazing fit because that’s what my guys do (and they do it well) and I am so grateful for their dedication to their craft, but some of this is just part of the game.
Leg in a Bag As I get ready to try it on we have parts everywhere! Such is the life of an amputee.
I wait here, excited for this new chapter, anxious and cautious but excited, for what it’ll allow me to do. It signals that I have overcome a year of change and trials. I am a warrior and conquering the challenges that come with the journey. I have learned to live in the now, to be present and remain happy in the moment I am in, despite the challenges. Change is going to happen but I will conquer what comes my way when it gets to me and not before. These times where I’ve been waiting for the next socket, the skin fit socket, I have learned so much about being an amputee, about my pain thresholds (they are pretty high), and how to make what I have work for me. I look forward to what waits for me on the other side of their door today but I will not rush into it as I know there will be a new learning curve, a new set of challenges. I will enjoy where I am, right now. There is a lot to learn from each moment. There’s so much excitement in not having to wear or wash liners! There’s a joy in me, knowing I won’t have to play with thickness, finding the comfort I need by adding more socks throughout the day! However, I will now have to learn how to use a bag to pull my leg and skin down into my socket and avoid pinching my skin. I will surely find that parts of my socket will rub my skin raw as it adapts to the new fit, but in the end I will feel more free, more at home in this socket and with this positive outlook I know, without a doubt, I will be more successful, more driven and more active then ever before. I will feel complete!
I approach the building and hold my breathe with cautious anticipation. As I open the door and hear the familiar, happy greetings a small smile slides from my lips and I know my new journey is about to begin.
The new skin fit socket is on and feels great!! I got this!
Stepping out in Faith 