Pain – 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

Medications vs. Nature – Pain Management

So this can be a touchy subject and not always an easy one to pin point. First off, everyone is totally different, what works for one, is not always what will work for another, regardless of any condition. There is also a wide range of tolerance for pain and which changes the spectrum in a huge way.

What are your suggestions between different medications, verse taking a natural remedy from physical pain? How many different things have you actually tried? What were the results and what are your recommendations?

For me, my tolerance for pain is extremely high, so when I am hurting more, over a longer period of time, then that usually means something is really wrong. The medications I have been on for everyday pain has been Tramadol, which I stopped taking because even that stopped working and frankly, if I want a Tic Tac, I’ll buy Tic Tacs. I have also tried medical marijuana, the lowest THC content with the highest CBD, which was very affective, the cost however is ridiculous and because its not fully legal, its not always the safest route. I am currently going to try a narcotic patch called fentanyl.

In severe times in my life I have tried specialists, such as: Reiki, Chiropractic, Sports Medical Drs, and Physical Therapy (PT). So I am a very open minded person when it comes to finding relief from pain.

I am constantly stretching, twisting, and cracking to keep my body loose and mostly because after being in any position for more then two hours, the pain becomes rather intense. To be fully honest I used to drink a lot, and by a lot I meant, it was cheaper, easier, quicker and legal to get and solve a major pain situation. This however, had many bad side affects on everything in my life, I can thank my spine situation and close family and friends for helping me see that. So now the pain is more relevant because I am not drinking everyday, and I am not taking pills due to the nasty side affects that I went through dealing with my spine surgery. Bottom line, over 9 months on dilaudid, is not a safe place to live and to come off of that, plus, oxycontin, and a stress medication was literally a living hell. Not something I ever want to go through again, ever!

Maybe if we all share our experiences and be fully honest here, we can find a solution that actually works and doesn’t duck-tape the issue of pain? At least thats my hope. I certainly don’t want to become the 102nd reason for duck-tape.

I have also always used meditation as a way to help relax my body and more so, my mind before procedures, PT, surgeries, or recoveries. It can greatly affect the healing processes that your body goes through. While keeping you centered mentally and able to keep a positive outlook during times when there isn’t much to be positive about. Now there are all sorts of different kinds, that can teach you their approaches. Mine has always been very simple, I use Transcendental Meditation. I put my self in places where I have been that have been the most relaxing places to me. I slowly bring my breathing down, slow and deep, in and out. As I begin to wash away all of my thoughts and concentrate on that place only, I eventually literally am there. Thats what works for me, again do the research, their are literally 100’s of different types of meditation, so try them until you find one that works. I’m always doing research to see if there’s a different technique that might work better. Being that life is constantly changing, growing and revolving, I believe so would my minds mental relaxation techniques.

Define Your Pain Levels From 1-10

As I am sure you have been asked, time and time again “Please rate your pain from 1-10, 1 being the least and 10 being the worst, how much pain are you in?” Now, I would like to hear from you on this subject because my first thought has always been this:

First, they would need to grasp what my definition of what my 1-10 is. So I have explained it as such, “You know when you have worked out really hard, or maybe utilized muscles in a different way for an entire day and how soar your body is the following day? Well that feeling, for me, that’s a good day, as in, let’s go run threw the fields and jump and play So how does one actually rate that on your scale of 1-10?”

So has anyone else figured out a different way to explain that to someone without Arthrogryposis? Penny for your thoughts?

Also, as you have aged, has your tolerance weakened? I noticed lately my joint pain is greatly increasing. From the sharpe, stinging sensation that could last for a few hours to a few days, to the un-easy feeling of the joint just needing to crack but never does. That pressured feeling that only gets relieved by cracking or popping it but no matter how much you try to stretch it, it just will not let up.