Sunday, November 10, 2013

An Important Lesson 2013

Okay, I lied. This post was supposed to be about what happened in 2011. Before I do that, I have to discuss something more important first. I've learned a very hard lesson. Just because you are a relative to someone doesn't mean they have your back. Hopefully people can take an important lesson away from this post.

"Don't judge a book by its cover." I've heard this quote a lot growing up. It applies to many various aspects of life. It's one thing to judge a book. It is another to judge a person. Books don't have feelings. Human beings do. My advice would be, before you decide to start judging what a person is going through, you should try to imagine what life is like in that persons' shoes. I appear fine on the outside when I have a shirt on that doesn't show my shoulders; however, once I have a shirt on that shows my skin, the scars that are exposed tell a whole different story.

The past week and a half has been very hard. It is always hard physically, but it has been exceptionally hard mentally. First I didn't get good news from my surgeon in Kentucky and then a not so nice "family" member decided to talk garbage behind my back. I am so thankful for my cousin. He is like a superhero because he had my back and came upfront about what this "relative" said. Everyone is entitled to their opinion with what I am going through. All I can say is I have every op report, every test result, every MRI report, every scar etc. Every medical professional I work with believes me which is what matters the most in the end. They are the ones who will be working to get me better. There is no way to act this out and I don't know why anybody would want to. It is my personal belief if you don't have anything nice to say, don't say it. If you are going to talk behind someone's back, make sure you have ALL of your facts straight. Finally, make sure you won't regret the things you say.

In previous posts, I've mentioned my family started a fundraiser to help offset the cost of all the past and future expenses due to travel, physical therapy, testing, and surgery that have occurred over these 8 years. It's completely understandable. Unless you are a millionaire, there is no way you can keep up with all of it. This "relative" I mentioned is a piece of work. He says, "My fundraiser is a scam. I'm only looking for money because I'm not on my parents insurance." Last but not least, "If I really need money, I should stop the charades and get a job." To this person, if I could work, I definitely would be. Do you really think I am proud to be 24, need more surgery, unemployed, dependent on my parents, and up to the ceiling in medical bills? I have been trying so hard for a number of years to get better, it is so insulting to hear some insane rumor like this. What hurts even more is this person is supposed to be considered "family".

With my situation, I get it is hard to understand. I even have hard time trying to understand why all this bizarre, rare stuff is happening. This individual doesn't realize I AM on my parent's insurance. They don't realize I fit the symptoms of having a soft tissue disorder due to all the surgery to stabilize my joints; since I don't fit a specific category I am just labeled as, "collagen deficient". When this person started talking behind my back, I hadn't even met with my shoulder blade surgeon in Kentucky yet. They probably don't even realize I was diagnosed with chondrolysis in my right shoulder. Chondrolysis is an irreversible rapid destruction of the cartilage in the joint which causes severe arthritis. We don't know what caused the chondrolysis to occur, but we do know the chondrolysis is what caused my shoulder to deteriorate in less than one year. Instead of strictly needing to have the reverse total shoulder replacement in 2014, I also found out I need to have left scapular muscle reattachment surgery again. The muscle transfer that I had done in 2011 loosened, as well as the repair of one of my other muscles. I am essentially "programmed wrong". My nerves are sending a signal to my muscles to stay in a constant state of contraction rather than being relaxed which has caused my muscle reattachments to loosen. I don't even have the correct words to describe how hard the beginning of next year is going to be. We have to fix my left shoulder blade first. This will probably be done in January in Kentucky. I will be braced for 4-6 weeks. My right arm literally only has motion at the elbow and wrist. How in the world am I supposed to rely on that arm to do every day tasks? Even with the shoulder blade injury, I still use my left arm for everything. Six weeks after the shoulder blade surgery I will need to have botox injected into my latissimus dorsi muscle. The botox will "paralyze" the muscle causing it to stay in a relaxed state. This way when I have the reverse shoulder replacement in Colorado on my right side probably in April, my latissimus dorsi muscle can't damage the newly attached muscles by contracting. After both surgeries are done, I will stay in Colorado for an extended time doing physical therapy for both shoulders. Like I said, next year is going to be very challenging.

The primary purpose of this was to give a medical update, as well as to enlighten people about the importance of why it is so important not to judge someone. Especially when they have some sort of medical condition and they do not know the whole story. Those judgments that are made are the lowest blows possible. I'm hoping people will think twice before they start spewing hurtful, inaccurate, insulting information that is not true. I also hope that people who have had hurtful things directed towards them can try to not focus on the negative and think about all those people in your life that sincerely do care about you and have your back. I am NOT putting on a charade. Believe me, I have to live with this situation every day of my life. It is not easy. With chronic medical conditions, it is these type of people that make it hard for anyone to understand what it is like to have a chronic condition. Instead of asking questions to learn more, these people decide to make assumptions instead. Just because a person looks "normal" on the outside does not mean anything about what may or may not be going on in the inside. What about people with mental illness, soft tissue disorders, cancer, arthritis, cardiovascular disease, stomach problems, obesity, inflammatory disorders, how do you judge them? Do you think people who have chronic medical conditions are happy that their condition has brought them to a point where they have to ask for outside help through donations? I know I'm not. So the next time you decide to say something inaccurate, think about how it is going to effect that person and imagine what it is like to live life in their shoes.