Being “Fixed” vs. Being Self Aware And Listened To

This is a touchy subject, on many levels, especially when it comes to Arthrogryposis and people NOT living with it. This is a very important article for Doctors, Parents and anyone who deals with anyone else with Arthrogryposis and thinks they need to be “fixed” based simply off of how they might do things, or even worse off, how they ‘look’.

As I  wrote in a previous article, what everyone needs to understand is that those of us with muscle control have learned how to do things our own way. Which to everyday people that may seem odd, strange or as if we need help all the time. Well, here’s a some insight, from my perspective, if I need help I will ask. I first will try every technique I can do do something, like tying my shoes, taking off a shirt, etc. before asking for help because I know damn well I can do anything I put my mind to.

I had an issue once, when I was in my upper teens, I was learning how to clip my toe nails. As anyone knows, when you first learn to do this and clip them too short, or slightly off, they bleed, A LOT. Well I did that to my one toe, which happened to go under my big toe and the doctor at the time saw this. The shit literally hit the fan with them all, they were convinced my toe was always like that and went on this rant about how I needed to “fix” it with a surgery. Regardless of me explaining that I just clipped my toe nail wrong, that it will heal and it is never like that. Even at 17/18 yrs old I was ignored, apparently I didn’t know shit about my own body, so we went through with it.

I had the surgery, scheduled the appointment to have the pin removed from my toe after it was in there for 7 weeks. They wanted me to wait and see the doctor at the time again to go over it but at that point I had made up my mind as was finished with ALL of it. Because they had proven beyond a doubt that the direction they were going in was WRONG, “fixing” things that were not broken because they wanted to try a surgery to fix a toe, that went under my big toe, to see if it worked, was WRONG. Or even worse yet to treat someone, a human being, like they are not aware of their own bodies is WRONG. My toe, by the way, is worse then it was, still under my big toe and now the nail is all sorts of jacked up and is now really tricky to cut.

So I can not stress enough to Doctors and Parents out their dealing with kids with Arthrogryposis, that they need to clearly evaluate their situation and if that person is coherent enough and is aware of their situation, then they NEED to listen to them. If they are saying they do not want to be “fixed” then listen to them. If they are explaining any situation, about what ever it may be, that they are being told that part of their bodies need to be “fixed” and do not feel the same way, then LISTEN. Unless the Doctors are suggesting a procedure that will benefit them down the road, and not cosmetically, but actually help them remain a contributing person in society then, by all means pursue that. But this need/desire for Doctors/Parents/Society to “fix” a persons body, because it doesn’t ‘look’ like everyone elses, is wrong to do to people who live with it that way and don’t feel like it’s wrong.

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Under The Blade

From what I have been able to find and read about, people with Arthrogryposis have been under the blade up to 5-30+ times and some still require many more due to previous surgeries alone. In this article I will share with you my experiences in as little detail as possible, lets be honest, even I don’t want to read all of that crap. I am sharing this in hopes to help anyone else put into perspective their own situation and hopefully generate a conversation through the comments sections.

I can truly say that without Dr. Cow, (whose name may be shortened, and even spelled wrong) I was a very young child when he was my doctor and without the way he handled every surgery with me, I don’t think I would have ever understood the procedures they were doing to me back then. He would get me all prepped, tell everyone to leave the room and then proceed to explain to me exactly what he was going to do. Mind you he didn’t leave out any details and we are talking to each other person to person. Not child to adult, or dumbing things down because i was so young, he knew me so well and made it a point to spend as much extra time with me to know that I damn well understood what was going on and was very aware of things. He would ask everyone to leave and then go over everything and at the end say tell me “here’s your options kiddo” 1. we can get you into surgery, and hope things turn out for the best, which I am confident they will OR 2. you can tell me you don’t feel comfortable with this and I will send you back to your room, and you will still get the yoyo. So what do you say kiddo, whats your move? Now he would do this before EVERY surgery and this was from the age of 3-7, from birth to the age of 7 I had had 16 surgeries, give or take. Ranging from various tendon releases under each knee, and the front of my hips to full out major surgeries to both feet (3 on each foot to be exact, to get them in front of me)

Aside from meeting Dr. Arlet (who recently did my spine surgery) Dr. Cow was the only doctor I ever trusted fully with my life. AS a child he was very aware that although there could have been a lot more procedures done, he went the route of, if its not fully broken, lets not fix it. My parents also played an important role in all of this, because had I received more surgeries then I have had it may not have been beneficial for me. So my point to these paragraphs about doctors is that finding the one that you feel fully confident with is the key to ALL of this. I can tell immediately if I can trust someone, or if they are even confident in themselves to handle my situations. Dr. Arlet has been the first surgical doctor that I have met since Dr. Cow that I would fully trust with my life and his team that works with him is astounding. Dana Randall is an amazing and trusting companion to have help me get through this recent ordeal and of course Maureen (Reenee) Donohoe PT, DPT, PCS from Dupont has been my staple from an early age.

The other point I wanted to make is that regardless of what surgery it is, there is a huge mental side of this that people rarely talk about and I feel it’s one of the most important aspects of going under. Figure by that point, dealing what ever has lead you to surgery is in the bag, but being fully mentally prepaired is crucial to how fast or slow you recover. For me it has always been some sort of a roller coaster of emotional trains of thought, that eventually end up me weighing in the pros and cons of what I am about to go through, and fully accepting both ends of them is important. It’s like taking a step back from yourself long enough to detach yourself to see both sides of the coin and and accepting which ever side faces up. An example of how I know I am all set, this recent surgery, Dr. Arlet came into the prep room and said “how are you feeling this morning?” Now, if i wasn’t on point I would have simply answered him, but because i was on point, my reply was “Better question, how are YOU feeling today, how I feel is compeletely irrelevant?”

The different types of Anesthesia, (click on the word to read more about them) local, regional, and general and I think its important for everyone to learn about them. I believe the only kind I have had is General, and I definitely notice the side affects to them I have been told by close friends they haven’t noticed a difference but I can honestly say after the last one. I notice internally that my response time is some what slowed, or lagged. It could also just be me ahahaha!

What are your thoughts, do you feel this article helped you? Did it raise questions you may not have thought of? Is anyone actually paying any attention to any of these articles? (ahahah)

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