Why Amputation Isn’t Giving Up

{{Dear readers, if the word ‘amputation’ when mixed with RSD throws up red flags for you, know that it does for me, too. However, if I were to have this surgery, it would not be in an effort to rid my body of my RSD. It is because of complications that I have been having such as infection risk and the threat of losing my limb higher, or even my life. Before you jump to conclusions or assume that amputation is a good treatment for RSD…it’s not. It’s an extreme measure but one that may be necessary in order to preserve my quality of life. This is an individual case, not anything that should be used as a method of pain control for the general RSD community.}}

Over the past nine days or so since amputation of my right leg became a larger possibility, I’ve had a swirl of thoughts and emotions. I mean, how can you not when you’re in charge of making the most permanent decision of your life? On the spectrum of ‘no way, José’ to ‘cut it off NOW’, I’m definitely leaning toward the cut it off side. There’s obviously still the chance that things will change or I’ll change my mind, but I am trying to prepare myself for the reactions from others, regrets I may have later on, how I’ll feel, and the rest of the baggage that comes with such a big surgery. Of course, I won’t be able to have all the answers and get through all the emotions beforehand, but it’s better to be prepared than to deal with this all after it’s all said and done.

One of the pesky little thoughts that has popped up a few times in my brain is that by going through with this surgery, I will be giving up on my leg, on hope, and on my fellow fighters who don’t have this option. 

Now, I know that this is basically a lie. If I were giving up, I wouldn’t even have surgery. I wouldn’t do anything. I’d probably just throw in the towel on life. So no, I am not giving up. It’s just another lie that I have to confront during this process.

In order to confront and defeat a lie, it sometimes helps to go through they why behind the lie. Sometimes, there’s no logic behind the musings in my mind. When that happens, I know to shove it aside and let it be. But for this particular situation, I can definitely see where the thought process comes from. In fact, I wouldn’t even be surprised if some people were to accuse me of giving up when they heard about my predicament.

Back to the why behind the lie: I sometimes feel like it’s my duty to go through this pain instead of taking the supposed “easy way out” and letting my doctor cut off my leg. Really, that’s not easy at all, but in some ways, it can be viewed as such. By going through with amputation, it’ll be like committing to the idea that my leg will never get better. Giving up that strand of hope that if I deal with it for long enough and try enough treatments, then it’ll magically become whole again. As far as my fellow fighters go, I know that many of us wish for amputation at some point in the journey. We want to get rid of the thing that is causing us pain, wiping our hands of the disorder. Of course, we all know that amputation doesn’t really solve RSD, so that’s another faulty thought, but sometimes I feel like people may get the impression that that is the reason for this surgery. It’s not.

Okay, now for the truth: amputation is not giving up. Following my doctor’s recommendation is not giving up. Going against the grain is not giving up. This is my body, my life, and my situation. I could choose to do nothing. I could choose to wallow around, waiting for a major infection to take residence in my leg (which is what my doctor said will happen if I don’t get surgery). But instead, I’m choosing to fight for my health, for my life. I’m choosing to do whatever it takes, even if that means losing part of my leg, in order to have a chance at a better life. Instead of giving up hope, I am shifting the focus and placing hope in the idea that this will have a happy ending. That even if my RSD spreads, I will be in a better state of health to deal with it. Amputation does not mean that my fight will be ending, but rather, it will be the start of a new journey that will hopefully lead to brighter days.

Tomorrow is Decision Day for all of this. My mom is eager to talk to the doc about logistics and have a date set if that’s the route I choose to go. I’m not going to make a definite decision until I get some more questions answered and have this meeting with everyone, but I am preparing myself for each scenario. If amputation is what I choose to do, then I will do it with my head held high, knowing that I am doing what I believe is best for my body…and I am not giving up.

RSD and ED {NEDAwareness Week}

So here’s something I don’t really talk about much, but since it’s NEDAwareness week, I will chime in a bit of my story…

I am an eating disorder survivor. I could say I’m a victim or in recovery, or even recovered. While those may be true, or may have been true at one point in time, I like the word survivor the best. It indicates that I fought a treacherous battle and came out alive. Even though I could have lost, could have died…I didn’t. I survived.

Having an Eating Disorder and also having RSD is fairly common, at least from what I’ve heard. My disorder developed around the time that my RSD appeared, and spiraled out of control after the diagnosis 8 years ago. The trauma from my whole RSD ordeal, along with other predisposing factors created a chasm of chaos, and before I knew it, I had fallen into a very deep pit.

There are so many stereotypes and misconceptions about eating disorders, so that may be part of the reason I keep quiet about that chapter of my life. But I really think awareness needs to be spread about the truth behind ED’s. Because they’re not all how the media portrays them. Allow me to enlighten you.

5 Common Misconceptions about Eating Disorders:

1) Eating disorders are all about food. No. No. No. False information. While they may manifest themselves in the form of food, there is a much deeper issue going on. People with ED’s use food as a way to control something in their life. For me, my RSD was something that I could not control. I couldn’t control the pain in my body or when it would spread, so I transferred my out-of-control feelings to something that I had a say in: food. But it was never about the food. The food represented all the fears, problems, and things I couldn’t control in my life.

2) Only girls have eating disorders. Again, false-o. Eating disorders do not discriminate-boys, girls, men, women, old, young. It doesn’t matter. ED’s are not just a “rich white girl” problem, as some may have been led to believe. Absolutely not. Everyone has some sort of a struggle in their life, and for some it happens to come out this way.

3) People choose to have eating disorders; they can just stop if they want to. What?! Can you choose to have cancer? How about RSD? Diabetes? Nope. While someone may be performing certain ED behaviors, typically they do not wake up one day and say, “hmm…what am I going to do today? How about I develop Anorexia.” That would be ridiculous. I once was in the hospital for my eating disorder and a nurse there took me into a room and yelled at me, saying that I caused my ED and all my problems, and I was just trying to get attention. She, along with other healthcare professionals, told me that I needed to just “snap out of it” and stop wasting my parents’ money on treatment. Yes, I even had a doctor who took out a calculator, added up how much my treatment was costing per day, and said, “See, you’re wasting xxxxx dollars per day, all because you won’t eat. So just eat and go home so you don’t dry up your parents’ bank account.” EXCUSE ME?! Ridiculous. So no, people don’t just choose them like they choose their outfit for the day, and believe me, if they could magically stop, they would. Oh, so many days I cried out and wished I could just stop. But it’s not that simple.

4) “Once an [anorexic, bulimic, binge-eater…] always an [anorexic, bulimic, binge-eater…] . Wow, so you’re saying that having an Eating Disorder automatically means that you will be chained to it forever? Really? Okay, so the truth of this statement is that there is no cure for eating disorders. True. There isn’t a pill that you can take or a special treatment that is guaranteed to work. But there are ways to break free. Does it take hard work? YEP. Dedication, determination, and a conscious decision to stay on the right path? Sure. But it isn’t a set-in-stone life sentence. I used to have people look at me and say that I’d never get better, I’d always struggle, and I might as well just stay in a treatment center forever because that’s all I’d ever be. “The anorexic girl.” I refused to accept that, because I wanted a life bigger than ED. I worked hard and decided to dedicate my whole being to achieving freedom, and now I am here to say that I no longer consider myself as an individual with an eating disorder. I am free from that. Sure, I have my days when I don’t love what I see in the mirror, or I feel like I am out of control a bit, but I choose to stay away from the old coping mechanisms of the past. So no, once an anorexic, not always an anorexic. The same goes for bulimia, BED, EDNOS, etc.

5) You have to be “tiny” or look a certain way to have an eating disorder. There are plenty of people out there who have been diagnosed with eating disorders, but you wouldn’t be able to pick them out of a crowd. Yes, a common indicator of anorexia is low body weight, but there is more to it than that. There are thin people who are perfectly healthy, and there are average sized people who are in the depths of an eating disorder. There are eating disorders other than anorexia, and you don’t have to be stick-thin, as the media may portray, to have an eating disorder. Eating disorders can be invisible, just like pain. So don’t automatically categorize someone based on their outward appearance.

Those are only a handful of the common things I hear people saying about eating disorders. Please know this: eating disorders are not a joke. They are serious, and they need to be taken seriously. They are not a game and they are something to be mocked.

If you or someone you know has an eating disorder, there are many resources here. And if anyone needs a listening ear from someone who’s been there, you can always talk to me 🙂

Be kind to everyone, because you never know who may be struggling.