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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

 

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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