Doctors – nothin' specialtb

Appreciation

So it’s been a while since I wrote in this, guess I have been busy figuring things out and I finally feel like it’s time to fully appreciate everything that I have. Especially all the important people in my life who have been there during my most recent situation in life with AMC.

It’s rare that you actually have the best support team of friends and family in this world where there is so much going on. I can truthfully say that I do, without their support, their effort to help me through the most difficult of experiences that literally almost had me checking out twice during the early stages of the process. The pain was that intense, that it mentally wore me down to the point of not even thinking of others anymore and seriously considering checking out, because I knew the pain would stop. Having the group of people around me during that time, constantly checking in on me, always letting me know they were there, even though I was so out of it on the planets strongest narcotics & opioids was an essential key.

My Mom had to see her son go through what even she said was up there for going through situations with AMC, although she said, since I went through it as an infant then I can survive it as an adult. Accept she liked me better then dealing with it then because I wasn’t as much a pain in the ass, mostly because I was an infant hahaha.

J & his entire family fully supported me during the entire process from the moment I noticed something wasn’t right in the elevator in Chicago with J, to where it has brought me now. Helping me through every hurdle from learning to deal with the intense pain I was in, to helping me escape the opioids & narcotics that had me trapped within my own head.

My roommate, Tom, at the time was the everyday person that saw me go from life at 100 miles an hour to barely being able to walk down the stairs. A saint by any means that’s for damn sure.

Reenee for being the key player in all of this that helped me get to the right Dr and actually find one that was confident enough to help me and did an amazing job, hence being able to type up this entry of appreciation.

Being there with me through each phase of it must not have been easy on anyone that saw me, or dealt with me and I am truly grateful for all of them. Each phase was a hurdle that I was sort is familiar with, just not as intense and certainly not my entire spine and it was about 30 yrs since I had been in a situation that difficult to pull out of.

The phases: ( or seven layers of hell, I like to refer them to)

1: The realization that something is drastically wrong, before any of the Drs even knew, having AMC, my physical awareness is ridiculously through the roof.

2: Going through the process s, upon tests, upon tests, then repeated tests, upon tests and still hold it together. Hailing the conversation in the beginning with my main Dr, that I didn’t want to go on pills, but the pain was so intense and after he saw my results he even said we will always use the lowest dosage but you are going to need something strong in order to help you through this because of your tolerance to pain and the fact that you are in so much pain it literally appears on your face, even when you laugh.

3: After months and months of tests, hearing from top spinal Drs, that their was nothing they could do, literally and almost giving up. I reached out to people who were involved with me younger years, they helped me get to the correct people because I was on intense mess, not by choice mind you, and was beginning to have difficulty seeing things clearly. Due to pain, the lack of finding help, the mess, my life quickly was deteriorating right in front of my eyes.

4: Coming to terms with the idea that surgery was my last and only hope, the pain was so intense that I was already set to checkout had it not worked. Having the last spinal injection procedure and literally telling them, they need to stop the pain because I couldn’t handle it anymore. They even left me in the room by myself with mess sitting out as if to test to see if I was junking out. I literally was in tears by the time they returned and when he said he was sending me back to the surgeon, I clearly remember saying “please tell him I don’t want to feel this anymore, I can’t take the pain any longer, that I don’t want to feel it at all even afterwards”

5: Having the surgery, now this was a place I was familiar with, the mental preparation of going back under that deeply for the 17th time was a massive undertaking to handle. I was more upset about possibly loosing memories, because whether people actually notice or not, it literally is the most difficult part for me, when coming back out (waking back up). I definitely notice it now, I’m not as sharpe as I was, I can literally almost feel the wheels turning sometimes before answering or showing a reaction. I will take that anyway over where I was.

6: Recovery, physically I’m perfectly fine with, I can be stretched, pulled, cracked, whatever that was not the problem. The problem was literally remembering relationships, this I absolutely lost. If I hadn’t seen or heard from you recently after surgery then I was very unaware of the relationship that we had before and upon seeing people again, it either clicked or I just went with it because I didn’t have much of a choice. There are people I totally do not remember and I have to explain to them why, because there have been a few that have seen me recently and I literally went blank. It’s not fun place to be, but I’m here and I’m back, so I can always explain things and create the connections again.

7: The final hell phase and one that not many can get through. Getting out of the mental trap f the medication, especially when you go through something so intense it requires the worlds strongest meds to help you through it. Once out though, it changes and it changes in such a way that I was literally trapped inside my mind. Watching me go through the motions, and literally not being able to control ANY of it is probably the most mentally scary place to ever be. Literally felt like I was inside those very old under water suites but I couldn’t control any of my actions, reactions, decisions, or lack there of. The only thing I had was control over my breathing and again having my Mom and J there to listen to me attempt to reach out through this suit, that I needed help because I felt trapped within my own head because the day before I was sitting in the living room and all four walls literally fell in on me like a house or cards falling down, Literally.

Finding Ann, my attorny who helped me get on SSD, because this has left me, physically not in the same shape I was before it all started. Having met her and knowing she was fully behind me in helping me get over this last real mental hurdle, once my mind was clear from all medications and accepting the fact that I cannot do things like I used to. Not an easy thing for me to accept, by any means. I always took a lot of pride in being able to do everything on my own. Now that simply is not the reality in my life and it took a lot but with her help, I am now able to move forward without the weight of that on my shoulders.

So that is my processing of this last experience, it’s not me complaining or reaching for a poor me type of thing, AT ALL. It’s simply what happens when my body is failing and the mentality it takes to fall that far and get back up again. With the support I had around me and the constant reaching out from friends & family far and near, I would not be here today to appreciate how much everyone means to me.

This entire procedure has literally changed my life, for the better, THAT however is another entry for another time, maybe. I may also just leave that where it is, behind me 😉

This was to show my appreciation and gratitude for everyone in life and to show how much they truly mean to me.

Thank you,
~ Ted

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.

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)