Oh you know, just 14

“Number 14!? I thought we we’re getting out of this one!” That’s what I vented to my mom as we walked to the car after a doctor’s appointment on Tuesday and a couple other words I won’t write online.

For the past couple years I’ve been having some swallowing issues, nothing serious but it sometimes results in having emergency surgery to remove food from my throat. It sounds terrible and it is kind of painful but there is a surprising amount of people who experience this problem.

Years ago, back in 1998, after I was overdosed with radiation, my doctors recommended that I have a swallow test in order to make sure I could still properly eat and swallow food. Between losing the majority of my motor functions within the span of weeks and a million other things going wrong; not being able to eat or drink was something I could not afford to worry about. So, in the basement of Johns Hopkins Hospital, I remember having a swallow test. The therapist I was working with gave me several different foods, all mixed with Barium (yes, the chemical, it helps the food to light up in your throat and easily be detected by the camera) Usually Barium tastes pretty awful but for some reason, it didn’t taste terrible with food. It ruined Hawaiian Punch for me but that’s another story for another time.

One of the things she had me eat was a peanut butter sandwich because it was nice and sticky. I am so thankful though that the Barium didn’t ruin peanut butter for me, I don’t know how I would live without Reese’s.

But anyways, the results of the test showed that not much with my throat had changed, I could still swallow like most “average” people. However, a closer look showed that one side of my esophagus had been severely damaged by the radiation and I experienced paralysis. The difference between paralyzed and paralysis is paralyzed is a complete loss of muscle while paralysis is only a slight loss or injury.

So what did I do for the paralysis in my esophagus? Pretty much nothing besides be cautious about what I eat, chew my food, and make sure I cut my steak into tiny pieces. Other then that, the therapist really had no other solution; kind of frustrating to hear but I’ve learned there are just times when things are out of our control and even the smartest people in the world can’t help.

But compared to every other life changing side effect from the radiation that I was all of a sudden having to deal with, chewing my food more was no big deal.

Fast forward to around 2009, I started chocking on my food a lot more than I did in the past. Not like a little cough or something went down the wrong pipe but more like, there’s something stuck in my throat and I can’t eat or drink; I need to go throw up. I know that sounds lovely but that seriously is what it feels like.

There were times that I was out with my friends at lunch and would get a piece of food lodged in my throat. From there, I would calmly just walk to the bathroom and pray that I could cough the food up which I usually did. But after awhile, this took a toll on my stomach and esophagus and created some serious irritation. Instead of being able to just cough food up, I would spend hours in pain and unable to eat or drink. So long story short, this happened in August and for the third (and hopefully final) time, I had food surgically removed from my throat. The doctor who did the surgery at the ER, told me at my follow-up appointment on Tuesday that in order to avoid this problem from happening again, that he would like to expand my esophagus.

So as I said before, you’d be surprised how common this procedure is and it really should be no big deal to me. It is a minor outpatient surgery that will take maybe 10 minutes and does not involve staying in the hospital (thank goodness!) I mean, compared to 12-hour brain surgery, this procedure is nothing. And I had two 12-hour brain surgeries!

I guess you can say I just had a moment where I was fed up with everything, tired of being disabled and feeling like I don’t fit in anywhere.This will be my fourteenth surgery too! I know, there are people who go through way more than I do so I really have no right to complain but really? 14?!

Right after the appointment, my brother called. I told him about what my doctor said and how frustrated I was. I totally didn’t plan on getting 14 surgeries. After listening to me complain for a couple minutes, he told me I should blog about this.  I quickly snapped back “What is so positive about getting surgery?!” His response was perfect and changed my attitude immediately. He explained that the positive spin is that I’m still alive after being overdosed with radiation and never gave up on myself when the rest of the world thought I was going to die. That I continue to fight, to prove not only the doctors but those around me wrong. And most importantly, this procedure will improve my life for the future and out of everything I’ve learned in life, I know it is crucial to constantly improve oneself and grow as a person.

As I listened to him, I thought “Ugh!!  You’re right (I hate admitting that!)

The next day, I had another appointment with my neurologist (is it just me or does everyone else have trouble saying that word?)

I’ve only seen her twice but she is already one of my all time favorite doctors. She is so positive and happy, like a little ray of sunshine. Unlike most doctors, she is very personable. She was the one who initially helped me get into PT at Kernan Hospital back in July. It ended up that one of her close friends actually is the manager of the outpatient physical therapy department so I  got an appointment with them right away. (Obviously was meant to be!)  I told her a little about PT, what sort of activities they have me doing and the vector system which is usually what I do at therapy. The vector system is so awesome, it is a large part of their gait retraining program. NASA must have created this system because it is anti-gravity and I bet at one point, astronauts trained on the vector. It is basically a parachute harness that is connected to the ceiling and there is a track it runs along. If I tilt to the side just a little or lose my balance and start to fall, it will pull me right back up. The machine holds me up and forces me to stand up straight while I can focus on my walking. It has only been a couple months but there is such a change in my walking. I can notice the changes even though there are small changes and those who are close to me see them, but to most people; I still walk different compared to them which was part of why I was such a “negative Nancy” earlier this week and wanted to throw in the towel.

As I finished talking, I could see her grinning from ear to ear . “You are so awesome girl and give me chills! You just don’t settle for anything and are so focused on improving yourself!You should be proud!!”

Before I said thank you and tried to be positive, my mom said it for me and went on with saying how I needed to hear that because I had been down about life the past couple days. (Most 25 year-olds probably would have been embarrassed if their mom said that but it doesn’t bother me; I love my mom for always looking out for me) My doctor just looked at me and shook her head and said I had every right to be annoyed with life and want to give up but that’s not who I am. I am spunky, determined, and always testing the limits of my strength. She said some really nice things that actually made me tear up and definitely boosted my ego. But she reminded me of something I needed to hear, that everything happens for a reason and we may have to endure some trials that we never saw coming but in the end, those struggles will make us a better person. And no matter who you are, we all get annoyed with life at times but giving up should never be an option.

I never expected to have 14 surgeries but it will be nice to eat and not have to worry about choking. And I don’t know about you but I kind of enjoy the crazy places my life has taken me! Like Audrey Hepburn says “Nothing is impossible. The word itself says I’m possible”.

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2 Comments

Filed under Positive attitude towards life

2 responses to “Oh you know, just 14

  1. Andrea

    Girl, you are awesome! Always was…always will be!

    Like

  2. I love your mom and your brothers, they know you, love you and will always have your back. I will too. I am proud of you and cannot wait to read the post on here after your 14th surgery. I love you and am so very proud of you. Aunt DAF

    Like

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