Life Inside Outside

Anyone that spent a lot of time growing up, going inside a hospital for extensive physical therapy, every time they grew, might relate to this, hence life inside and outside. My questions for those that can are: How did you manage to mentally prepare for going in and then going back out? Were you treated as if you had something wrong with you when you were inside going through PT and then once you were back out, where you were back to being treated like everyone else?

Aside from various surgeries/casts/recoveries from those procedures, every time I grew, I would tighten up. Which meant I needed to get stretched out and from the naked eye, some might think, damn that sounds like it would feel great and be relaxing in a way. Let me tell you, it was far from feeling great, and very far from relaxing.

An example of what I am talking about, say went I first started therapy my left leg could straighten to 55 degrees on my mown, my right 50. By the end of two weeks, my left could go to 10 degrees and my right to 5 from physical therapy. Now to get even a better understanding of what this means: say your legs both can straighten to 0 degress straight, we are now going to make them go 55 degrees further. Oh, and if it was during the school year, I also had to keep up with my school work, so that when I got back to class after two weeks in a hospital, I wasn’t behind. This is not a complaint or whining about what I did, it is strictly telling you the facts from my own perspective. It wasn’t just me knees though, it was my ankles, knees, hips, elbows, and hands, pretty much every joint was being stretched and pulled on.

Although I rarely let them do much with my hands, neither did my parents, being that I was able to draw and write so well, there was no need to force anything on my hands. They may look different then the usual but there is definite talent in them so why mess up a good thing. ūüėČ

So, after two weeks inside, i would go back outside, where i dealt with all the childhood issues everyone faces growing up. It was nice to get cards from classmates and such and I definitely believe that me being treated on the outside like there wasn’t anything wrong or different about me was a good thing. It did however play a messed up role on my behaviors though. It never really stuck as a kid though, mainly because I found solace and my own mental grounding in my artwork. In fine tuning my craft, being creative, and escaping into a mental space that wasn’t either inside or outside. It was mine.

I do believe however that it has made me slightly an odd person to hang out with at times. I am not usually the one to strike up random conversations, especially if something else is bothering me. This behavior has always sort of plagued me in a way and I can notice when it makes others uncomfortable, it’s just not uncomfortable for me and makes it some what difficult to explain. I do feel that it stems from going through all of that growing up and I can truly say that I never want to do that ever again. Like how I have heard people say, man I’d love to be a kid again, f$ck that, no thanks!

I didn’t really go into much detail of the procedures of extensive PT, mainly because then it begins to feel like I am complaining about it. Maybe thats just in my head, truthfully, without having gone through all of that ‘hell’ of PT, every time I grew, I may not be in such a good condition that I am in. Although aging and having joints and bones degenerate lately is not something I can control and probably could not have ever prepared for. Not sure who could actually. I can go into details if people want me to, just ask. I am not shy and will explain anything about any of my topics I write about in full detail if you want to read it. Feel free to ask me anything, anytime.

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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