Tag: life

The Nerve of Some People

The Nerve of Some People

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Plastic Surgeons and TMR Surgery:
Tackling Phantom Limb Pain

 

Everyone deals with pain at some point in their life, but when you have an amputation you know that there is a possibility of living with a pain you can’t even touch! When the missing limb is burning, itching, throbbing, or sending sharp pains with every movement it can be unnerving -pun intended- and hard to get past.

I, like so many other amputees, have dealt with phantom limb pain since day one. Most of the time I can handle it, sometimes in the quiet of night it can be hard to fall asleep, but I have been able to deal with it.  The point when I could no longer take the pain was when I couldn’t even walk into my kitchen without the pain being so sharp and unpredictable that I stopped moving!  It takes A LOT to stop me! I have a high tolerance for pain, and this was just too much for me. I have to say, this freaked me out and made me worry that maybe this was going to be like this for the rest of my life…. and then I stepped back and gave myself a pep talk. I cannot allow myself to participate in defeatist talk. Negativity cannot reside in me, I won’t allow it. So, what did I do? I had an appointment with my prosthetist and my surgeon who performed my amputation.

I was scheduled for an MRI to see if there was a neuroma, sure enough, there was one, exactly where I felt the pain. Symptomatic, great!

Next step? My orthopedic surgeon, Dr. Judd Cummings, told me that I needed to see a plastic surgeon, and the one he suggested, who knows how to perform a surgery called TMR (Targeted Muscle Reinnervation), Dr. Roni Prucz.  He put his confidence, and my future, into this doctor’s hands… and I believed in him, so I went.

Dr. Roni Prucz
Phoenix Plastic Surgery

 

Now, I didn’t have ANY desire for yet another surgery, but I promised I’d go talk to him.  What harm could that do?

….And before I knew it, I was scheduled for surgery! Dang it!

Dr. Prucz seemed confident that he could successfully help me with the pain on the back of my residual limb, where the neuroma was, but the sharp pain that I felt ripping down my non-existent shin, he couldn’t promise that. I couldn’t pinpoint where the pain was originating from and so he would just have to do exploratory surgery in that area, and hope for the best.

Without the neuroma, my gait has become so much better, there was no more pain there. However, the sharp pain, in the other area of my limb, returned about 6 weeks after surgery, not as often and not as intense, but it reared its ugly head and my fears of life-long pain returned.

No matter what, I will rise!

 

This is where I needed to advocate for myself and not just say, “Oh well, we tried.” That wasn’t good enough for me. I needed answers and I needed this to be fixed, or at least feel better. I saw my prosthetist, then Dr. Prucz, and then over to Dr. Cummings, just trying to figure this out, gain perspective, and to see if anyone had any ideas. I would NOT rest until I had direction.

Yesterday I took my next step in helping myself, I tried a sympathetic nerve block in my L3 and….. so far, so good!!!

I needed something that didn’t require another surgery and this was a good next step, and quick. If it works then I may be looking at having that nerve bundle ablated. I’ve been moving around for 24 hours now and not feeling that pain. This is a good sign, but I hesitate to get too excited, too soon. I will do my thing, I will beat on my leg through my high level of activities, like hiking, and really push the limits of my leg and socket. For me that’s the best way to really test out what I’ve had done.

I really test my leg and socket whenever something new has been done to either of them

 

I hope this podcast gives you some insight to TMR surgery, if you’re a candidate, and how to go about finding the right person to perform this on you. As always, I’m here for you! Send me an email or leave a comment. I’d love to chat and answer any questions you might have about what I went through. Talking to people who’ve been through something will help give you perspective and  maybe even curb fears you might have.

 

 

This week I want you to let go of the past, start looking to future. We cannot move forward if all we are doing is wishing we had back what we use to have. If you’ve lost a limb, it’s gone, there’s nothing you can do about it. The choice is up to you how you’ll view this difference. The choice is yours on how you will pursue your future. You can have a pity party, or you can decide to set new goals, change direction from the course you use to be on BEFORE losing your limb, and rise up!

The time is now! Dream big! Set new goals.  Adapt and move on with your life. I know there will be setbacks, I know there will be moments of pain, but they do not define you. Your attitude and what you do with your circumstance DOES!  What are you going to do? I want to see you thrive! I want to see you challenge yourself! I want you to rise up and conquer, because YOU are a warrior!  Now go out and crush it!

 

Until next time:

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

Angie

 

One Size Doesn’t Fit All

One Size Doesn’t Fit All

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Not All Sockets (or Prosthetists) Are Made the Same

Randy West, myself, and David Banks

 

I consider myself so fortunate to have been directed to The Limb Center by my doctor, Dr. Judd Cummings, as I was planning for my amputation. And I think I am a good judge of character, so when I went in to meet Randy West and David Banks for the first time, pre-amputation, I knew I was getting the best care out there!

Fitting my running blade and trying it out for the first time

 

When I told Randy I wanted to surf and I brought him some surf leg plans he graciously went to work and built it for me,
just because he knew it was my dream!

 

Cheesy, but priceless, photo op with Randy, the Blue guy and my new surf leg!😎

 

They listened to me. They actually HEARD what I was telling them about my dreams, goals and aspirations….as well as my fears and doubts about going through with this surgery.

Not often, but in my situation, I was able to take my test socket out for a “test drive”

 

…and test drive it I did!! A 5K hike! It ended up being a great fit.

 

I had visited another prosthetist’s office before I knew of The Limb Center, and I had a pretty good experience there, too. I also met an amazing young lady who was an above knee amputee and a fighter, while I was there. However, three major factors first swayed me to Randy and David, before I really knew them. 1) They took my insurance- this is VERY important and the other office did not! 2) My doctor was very familiar with them and worked with them directly and, quite frankly, I trusted my surgeon and his opinion in this matter, and 3) David was an above knee amputee with 20+ years of experience being one. He could see things and understand an amputee better just by living it.

Amazing attention to detail, and always teaching me how to be independent,
by showing me how my prosthetic works and fits.

 

Then once I got to meet them and talk through my decision to amputate, I knew that we had a connection far greater than me being an office visit here and there. I had their cell phone numbers, could call or text whenever there was a problem, and time and again, they showed me that I mattered to them.

This is the type of relationship you should have and that you deserve with your prosthetist.

Randy and David join me in this podcast as we discuss the right “fit” in your relationship with your prosthetist, insurance and getting the right coverage, steps to getting your first socket, and when to turn around and walk out of that office and find the right relationship you need to be a healthy, happy amputee.  It can happen, but you need to push that for yourself and know when to do it.

Knowledge is power, and I want to arm you with as much knowledge as I can so you can feel confident and ready to advocate for yourself in the medical field, in your doctor appointments and when finding and working with your prosthetist. When we have knowledge, confidence, and opportunity we can access limitless possibilities in our lives.

 

 

People don’t realize that who you see for your prosthetics is so very important-it can make or break your desire and ability to really live your life after amputation, and it’s a relationship, like family.  You’ll be working with them for years to come so you’ll want to make sure you trust and enjoy working with them.

As always, if you have comments or questions, for me or our guests, please feel free to reach out to me. I’d be happy to help.

Time to do the research and leg work- no pun intended. Talk to people, find social media groups that work with amputees, reach out to the Amputee Coalition and your doctor to see who they recommend as a prosthetist for you.

Once you have found a couple, make an appointment to go talk with them. Read their body language and how they talk with you. Do they want to hear your history, problems, dreams and aspirations? If not, move on to the next appointment. You deserve better, and it’s out there!

Make sure you address insurance issues and coverage with the prosthetist’s office. This is expensive equipment and will need to be upgraded over time- remember, it isn’t growing back so we need to make sure we have some help in coverage of costs.

If you have a prosthetist that you are unhappy with, and they don’t seem to listen or invest any more than your short office visit then you really need to find the courage and tell them it’s not working. If you are seeing someone who,  when you tell them you’re hurting or something doesn’t feel right, and they tell you that it doesn’t get any better and you need to deal with it…that’s a red flag! Time to research other places and prosthetists and find someone who can help.

This is YOUR life and YOUR body. You need to push for the best care so you can live it to the fullest. Don’t be afraid to stand up for your rights. I’m telling you, there are really good practitioners out there, you just need to look and ask the right questions to find them.

I wish you all well, and please don’t hesitate to reach out to me for help.

 

Until next time:

Be Healthy,

Be Happy,

Be YOU

“We cannot change the cards we are dealt, just how we play the game.”

-Randy Pausch

 

Is Amputation Right For You?

Is Amputation Right For You?

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Advocating For Yourself When You Reach That Moment

-My First steps as an amputee
-This was pure joy: a new life had been opened up to me
-The possibilities were endless

-My amazing nurses that saw me through
several days of recovery
-This was just before being discharged
-Excitement mixed with nerves

-Dr Judd Cummings, my amazing orthopedic surgeon

 

That moment had come, in my mind. I had done everything to make my knee work the way it was suppose to. I spent years in PT. I tried medication, pain management, dry needling, cryotherapy, holistic/Eastern medicine, blocks, non-invasive surgeries, and allergy testing. NOTHING helped. When I came home from Europe only to find out I had a blood clot and could’ve died in flight was it then that  I realized  that was it, the end of my pursuits to regaining mobility with the knee I was born with.

Enter Dr. Judd Cummings.

He listened to my concerns, had a real grasp of my years of trying to make things better and let me know that I was in the right place, checked off all the boxes, and that amputation was definitely a route he could help me take.

Was this an easy thing to talk about? No way! For a while I couldn’t even say the “A” word. If I did, it became real and I wasn’t emotionally there yet. I got several other opinions before heading back to Dr. Cummings office. One opinion even told me that I’d never walk again if I amputated!! Can you believe that!?!?

The reality is, you need to be in the right state of mind to accept it and go forward with this surgery. How did I know it was right for me? I knew I had exhausted all my options. I had started talking to people in that world who had success with their amputation, and I knew that I was NOT living my life. I was defeated. I was tired of working so hard for something that wasn’t working. I missed doing things with my family, my boys, who were growing up so quickly before my eyes while I watched from the sidelines.

I once had a doctor tell me that I would be a good candidate for amputation however I wasn’t there, yet. I had no idea what he meant by that….until my blood clot. It was like a final slap in the face. The final straw that broke the proverbial camel’s back. At that moment, in the ER, when the doctor told me I had a blood clot, I knew right then and there that I was physically ready for amputation.

I spent over a month getting second opinions, even though I knew I wanted Dr. Cummings to do the surgery, but I was doing my due diligence. Making sure I heard everything loud and clear from several medical professionals, asking a lot of questions, and sometimes hearing things I didn’t want to hear. Each one of those appointments lead me to the final decision, with conviction.

After I set the date for December 18, 2018 I had 3 months to mull it over, ask more questions, worry, get confused, doubt my decision and have nightmares. It was not an easy road leading up to that fateful date. But in those months I gained mental strength that was needed to rise above and succeed in my endeavor. By the time I woke, the morning of my surgery, I was in the best spirits, the weight of my decision was in God’s hands and I was ready! My Faith drove me forward, gave me confidence and conviction.

-I did it for them❤

When I woke after surgery, the moment I actually feared the most, I never felt better. Even my family was shocked by my recovery (I usually am very groggy and sick to my stomach when I come to), and my chirper behavior surprised them.

As I speak with Dr. Cummings in my interview you’ll hear some things that can help you succeed, if this is the path laid out for you. We discuss advocating for yourself in the doctor appoints, gaining perspective through talking to others who have been there, and knowing when to seek another opinion. Dr. Cummings also tells us what things he, as a professional, looks for when deciding if amputation is the best avenue for his patients.

This is not an easy road but it is possible to live your life once again. Yes, I look different. Yes, I have more hurdles to jump over when doing everyday chores. Yes, there are good days and bad days, but everyone has those. It’s ultimately your mindset and the attitude you take about your circumstance that can determine the success you have or don’t have.

Take a listen. Hear what we are saying and know that you, too, can live a full, healthy, and active life as an amputee.

Find joy in where you are, and hope that new adventures can still be had after amputation!

This week, if you believe you may be a candidate for amputation, or you’re leaning towards it, OR your doctor has told you that this is the way you should go then I want you to do a few things to help you in the decision making process.

  1. Check with your insurance on their coverage. This is a lifelong journey, not done once surgery is done. You’ll need to really advocate for yourself with your insurance company for the surgery AND the prosthetic care afterwards! Call them, multiple times, and make sure you always get the same answer to the questions you are asking: for example, is amputation covered? Is my prosthetic covered? Find out what type you may get-some insurance companies won’t cover an electronic leg and you need to know what that means to you.
  2. Talk to a prosthetist or two. Get to know them. Ask questions that you have thought about, like what type of leg you could get based on your physical activity level. There’s a K test they do to see where you are and insurance companies use that to determine what they will cover.
  3. Ask those prosthetist for people that would be willing to do a peer-to-peer. Talking with amputees, especially successful ones, will bolster confidence that you can do it too, and also give you an idea of their day to day routine and struggles they’ve overcome. I also learned through my peer-to-peer visits that they all had a common thread: they all had a great, positive attitude and all of them set goals for themselves for AFTER the amputation. Goals setting is so key, but attitude can make or break the situation you’ll be in.
  4. Get second, third and even fourth opinions about the surgery from different doctors. It’ll be insightful to hear the different takes they each have.

You have your work cut out for you until next week. Reach out to me if you have questions. I’d love to talk!

Until next time,

Be Healthy,

Be Happy,

Be YOU!

-My first “real” photo after I got home- I hadn’t “shown off” my new look until this moment

 

_

Embrace your new life. Except it and then you can find true happiness in the choice you made OR the choice that had to be made for you. You’ve got this! I know you can do it.

-Much love,

Angie

 

Being Comfortable With Being Uncomfortable

Being Comfortable With Being Uncomfortable

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Using Fear to Grow and Overcome Obstacles

What holds you back from accomplishing your goals, your dreams?

What stops you from moving forward, creating anxiety within you?

If you are crippled by fear and can’t seem to move forward in pursuing your goals just know you are not alone.  Everyone has some sort of fear: fear of failure, fear of acceptance, fear of being alone or in pain. The issue is never about whether you have a fear or not, it’s about how much it controls your life.

I use to tell my sons, when they were little, that it was ok to have fears, as long as it doesn’t control you or stop you from being healthy, happy and living your life.  Fear is defined by Merriam-Webster as an unpleasant often strong emotion caused by anticipation or awareness of danger; anxious concern. Fear is the most general term and implies anxiety and usually a loss of courage.  Sometimes fear is defined as a distressing emotion aroused by impending danger or pain, whether the threat is real or imagined.

For most of us, we experience fear based on past, unpleasant experiences. It makes sense. If I went rock climbing a year ago and my foot slipped and I went sliding down the face of the rock, scrapping up my body, I might instantly feel anxiety well up inside of me when a friend suggests we go rock climbing today. As adults, we tend to hold onto past experiences, good and bad, and file those moments away, only to have them resurface when we perceive that we are walking into a similar situation.

However, this only becomes a problem when it creates a roadblock in our living. If we allow that fear, that anxiety, to stop us from experiencing life, then we’ve allowed it to define us.

Once we realize that fear is just a part of human nature then we can learn from it, and dare I say, use it as a tool to help us grow and actually enjoy new experiences. We don’t grow in our comfort zones, we grow when we get pushed  into uncomfortable situations. It forces us to improvise, it heightens our alertness and makes us aware of our limits, helping us to push our minds and bodies into new, unchartered territories.

This is how I have felt since becoming an amputee. Each day I feel that there is something that makes me become more alert, anxious, or even fearful. When I first learned to walk in my prosthetic I worried about falling and hurting myself, or making myself look foolish in public. Then as I got better at walking I tried to run. I’d put on my running blade, but would only go out at night so no one could see me stumble, look awkward, or stare at me. Fear of not being good enough stopped me from getting out in daylight, when it was safer and easier to see the road. I eventually got past that enough to go out earlier, but I still felt uncomfortable. Each day would bring it’s own set of issues, anxiety and discomfort. I tried a lot of new things like sled hockey and surfing, for the first time as an amputee. And each one of these was a test of my fortitude on pushing past my own insecurities. I am a perfectionist and very competitive with myself and others.

If you can do it, so can I.

If you tell me I can’t because I’m missing a leg, I’ll show you that I can. (That might actually be the stubbornness in me).

Skiing in Colorado March 2021

 

In today’s podcast I share with you my journey at getting back to skiing and how fear of falling takes away from the experience. I want to enjoy skiing again. To be outside, breathing in the fresh air, getting exercise and making a connection with my family.

So what do you do when fear takes hold? How do you push past discomfort and really start living your life?  It’s a mindset. It’s positive self-talk, your own personal pep-talks.  It’s about goal setting.

This goes back to the vision boards I talked about in the last episode. If you didn’t hear that podcast you can take a listen here

My vision board

A vision board is a place to put your dreams, goals, positive messages. Once you’ve created it you will have a place to go to keep yourself motivated. When you start to worry or doubt yourself or your capabilities, look to your vision board. You also need to remember that goals take time, and the bigger the goal the more grace you need to have with yourself and the setbacks that may occur. I remind myself, daily, that baby steps are still steps.

When we went skiing this past week, my first day on the slopes wasn’t my best. I just wasn’t feeling it, my movements were tense and unsure. We didn’t ski again until the end of the week, and quite frankly I couldn’t help but worry that I was going to feel the same way as before. Part of me would have been content with not skiing again….but I decided to push myself into uncomfortableness and try again, and you know what? I had a great day of skiing! I relaxed, worked on breathing, remembered some techniques I had been taught by my adaptive ski instructors from the previous year and enjoyed my day (and yes, I even talked to myself, affirming my skills and capabilities as a skier). When all was said and done, I was grateful I pushed myself out of my comfort zone that day. I wiped away the negative memories of the first day of skiing and replaced them with healthy, positive ones. The funny thing about that, I am the only one who saw my progress, because it was internal. It was the way I felt out there and how I moved from being uncomfortable to comfortable. This was MY victory. I conquered my fears and came out on top.

You need to remember that you CAN do anything. You set your goals, you speak and write affirming words to motivate and push yourself forward, you surround yourself with a tribe of people who can support you-mentally, emotionally, physically.

It may not be easy, but you can accomplish your goals, and when you do, when you learn to be comfortable with being uncomfortable, it’ll be then that you will truly be living your best life. And nothing will be able to stop you.

Call to Action:

This week, write down a fear you have. Something you want to conquer. Decide on the goal and the steps you’ll need to take to get to that goal. Add the desired outcome to your vision board or tape it on the mirror in your bathroom, somewhere you can see it everyday, someplace that will be a constant reminder of what you want to accomplish. Now go for it!! Reminder: some days will be better than others (remember my first day of skiing was the pits) but don’t give up. I challenge you to enjoy the journey, with its ups and downs. Get after it, have grace with yourself. If you take a step backward, don’t GIVE up- GET up, and attack it again. You can do this!!

Finally, lean on someone. Ask for accountability and support from someone you trust. If you struggle with that, reach out to me, let me help you.

Make sure you let me know how you’re doing.

Tell me what your goals and dreams are in the comments below, or email me. I’d love to hear about your journey. I’m here.

Best wishes on conquering your fear(s).

Speaking of conquering fears, next week I have a special guest. My friend, Mike Coots, joins me from Kauai, HI. He is an amazing photographer, shark advocate, surfer, and an amputee who lost his leg in a shark attack! Be sure to subscribe so you don’t miss it!

Until next time:

Be Healthy,

Be Happy,

Be YOU!

Empowered, Active Lifestyle with Levitate

Empowered, Active Lifestyle with Levitate

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Podcast: Play in new window | Download (Duration: 51:06 — 36.9MB)

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About 2 weeks ago I reached out to Levitate on Instagram searching for someone who appeared to have mastered using a running blade. I had been out of my blade for over a year between socket adjustments, nerve pain and surgery. I was ready to try again now that the stars had all aligned but I knew that I need some tips and tricks to start moving again.

Enter Levitate.

I reached out to them in a DM on Instagram and they wrote back with 30 minutes! I just asked if they had some wisdom on getting me to trust my blade once again and how I could strengthen my residual limb. They sent me a video of a few exercises to start with and we got into a discussion about their company. Their mission was simple yet profound. They strive to create quality sports blades that the average person could afford, while empowering them to become active and healthy in a community that supports one another!!

WOW!!! I knew, right then and there, that they had to be a guest on my podcast and soon! I have heard from so many amputees about how they would love to get a running blade (or sports blade) but just couldn’t afford one. I felt that this company would be the answer to so many prayers and wanted to help them grow. They are located in Copenhagen, Denmark and wanted to get more following in the United States so getting their name out there was important, but making sure their mission was heard, by as many people as possible, was vital. I think they have something great and I want everyone to have a chance to be a part of this, empowering the amputee community to have the lifestyle they would like to have, to have a choice NOT dictated by price.

I hope you feel as excited and inspired as I am by what they are doing and what they are about.

Now is the time to live your best life.

The choice is yours, thanks to Levitate!!

Check them out on Instagram: @Levitate.sport or at www.letslevitate.com

Embracing Vulnerability

Embracing Vulnerability

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Wow! What an experience I had! To think that I felt totally at peace and right with my amputation, yet coming to terms with it, through a horse, and finding that I had some deeper fears that I wasn’t allowing myself to show-like it was a sign of weakness instead of courage! It was such a profound moment for me, one that I won’t be forgetting any time soon.

I am in awe of the grace and yet strength and connectiveness of horses to the people around them. It’s like they have a 6th sense to detect what we would otherwise ignore or try to hide.  They live in the moment and expect the people they come in contact with to do the same. I will be forever changed because of this experience and I am grateful that Cherokee taught me a hard, but valuable lesson, about myself.

Listen in the hear my story of the time a horse taught me to let go.

Me with Cherokee- The horse that forced me to open up and be honest with myself
Becoming a Warrior

Becoming a Warrior

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Be-YOU-tiful Adaptive Warrior

“Seven times down, Eight times up.”

-anonymous

Podcast and Website dedicated to those who desire to find the warrior within and unleash it to become their best self, living their best life.

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