Get Involved – nothin' specialtb

New AMC Awareness Blue Bracelet

Since I sweat constantly, (like I could be standing still & because my body has to work more to simply do that, I’ll start sweating) the bracelet everyone was using to honor, on June 30th a few years ago, as AMC Awareness Day, didn’t last very long with me, since half of it was leather. My little sweat machine soaked right through that & it detached from the sterling silver side of it in no time…

That being said, I saved up some scratch so I could begin looking for a version of a blue Bracelet that might hold up better with me & thought I’d share it…

Plus, I kinda like the more subtle approach to these things. I know, I know it prob defeats the whole purpose of wearing a blue bracelet, but let’s be honest though, if it takes seeing a blue bracelet on my wrist for someone to ask about my condition, then I’d bank that there’s a bigger issue there hahaha

If you are interested in where I got this, here’s the link
(again, I saved up for it):
World.Holzkern.com

The other bracelet is from St. John, V.I. & has an interesting story behind it as well. Maybe someday I’ll turn it around & share that story…

Until then, keep on… keepin’ on folks…

~ Ted H.

Wear Blue… June 30th AMC Awareness Day

Thanks to Ani at AMCsupport for dealing my design revisions during this process. I’d be surprised if I get asked to design anything else in the future hahaha but hey life goes on I suppose…

To donate, please go to: Arthrogryposis Multiplex Congenita Support, Inc.

#WearBlue #AMCawareness #ItsOurStory

Plant Based

Going Plant Based Was Like Living Night & Day

I wanted to share something I had never tried before, thinking what do I have to loose? The answer to that, simply, was… nothing at all.

I recently switched my entire diet to a fully plant based one and instantly noticed drops in my everyday pain levels of around 5, that I have lived with my entire life, that are now down are a 1. A 1!

I had truly given up on the thought of of ever being pain free and now it may actually be within my grasp.

Now, I can’t speak for anyone else because i understand that everyone is different, aside from the 400 different variations of AMC. I do want to share with you what I have done and the results I have found.

I went fully pant based a few months ago by joining PurpleCarrot.com (@PurpleCarrotXO) so I could learn how to cook this way and get a better understanding of things. I also had friends recommend me adding things like Chia & Flax Seeds to my diet.

Chia & Flax Seed Benefits:

I also watched What The Health on Netflix which began to validate what I was learning to be true. So without even thinking about it, I made the switch because I was not convinced that Big-Pharm was the way to go. There had to be a healthier way to alleviate the physical pain i was in that didn’t involve prescriptions and this was something I had never tried.

I instantly noticed a drop in pain levels, so much so, I stopped taking inflammatory meds & tramadol for pain. I had more energy, I wasn’t tired after eating and actually enjoyed cooking these new meals. Now it may seem extreme to simply switch over instantly but when I make a decision, I do it. I was also going to PT at Specialized PT twice a week and they highly commended me on switching to this diet and said the improvements for my body type will be tremendous and they have been.

So for those who are still living in pain and on meds, I highly recommend doing the research, check it out for yourself. You honestly have nothing to loose accept taking medications and beginning to live pain free.

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

Applying for Disability

If anyone has never required or needed to apply for Disability (SSI or SSD) then, may you never, have to feel the roller coaster of emotions that will certainly make you upset, piss you off, make you want to cut and run, or even throw in the towel. Understand this, NEVER GIVE IN!

Being that I was not one to ever lean on AMC or take advantage of a system that is designed to help those in need. Unlike (and this is a guess) say 90% of the population absolutely abuse and use the system. Which, by the way, caused someone like me, with a real genuine situation to have to fight, re-live every single detail over and over again as to why I am filing, have to file twice due to the lack of a proper attorney the first time through, find a real Attorney (MaddenTufanoLaw.com), re-live the entire situation all over again, fight some more, for 3 years. All while recovering, regaining, relearning, rebuilding, getting off some of the most deadliest medications on the planet and becoming stronger physically & mentally, while keeping my head afloat financially (robbing peter and f’ing paying paul) until the situation I am currently in is understood.

That I am in fact, not attempting to scam the system, that I in fact, require the services that our nation provides for those who can no longer fully work to the ability that they once did due to a symptom that I was born with (AMC), that I in fact had to mentally battle with & accept the fact that this is not going to get any better.

There is so much that I have learned over the past year, once I was clear headed from being off the medications, that I really don’t want to get into my details or trials and tribulations. I simply want you to understand that there are a few things that you need to know. It may help you better get a grasp on this process.

First, be prepared for the long haul, this will very rarely happen quickly, I have heard stories from people that have said theirs went through relatively smoothly and within 6 months. I have also heard Big-Foot was seen at Walmart buying flip-flops.

Second, find the correct Attorney, preferably one that understands the situation/condition that you are filing for. I found (MaddenTufanoLaw.com) through facebook groups for AMC, I highly recommend using every possible resource you can get your hands on these days and social media can help with this. THIS IS IMPORTANT, if they treat you like a number, dump them and find an attorney that treats you like a person.

Third, know your condition inside and out, study it, research it, know it better then any Dr will and let’s be honest, if you have any form of AMC then you already do. But dig in deep and find your specific version or at very least, connect with ALL of the people who have seen you. Get in contact with them, ask them questions, ask them for help, explain your situation. It will give you a better understanding that yes, you in fact, do need to apply for this now, rather then later. Something I severely struggled with in the beginning.

Finally, once you get to the point of sitting down with the person doing the filing, don’t get snippy, be respectful (the person filing has heard it all, seen it all, and is only there to fully understand your reasoning for filing), stay calm, YES & NO become your answers, have ALL your paperwork in line (financials, medical, bills, places of previous employment, etc), and (THIS IS IMPORTANT) ask questions, close your mouth and listen.

ssa.gov

~ Ted

Going To ER With AMC

So if anyone with AMC has ever had to go to the ER for ANY reason, you know exactly what that means.

• You have what?
• Can you spell that?
• Hold on I’ll be back (while they go and look it up and realize there’s hardly any information out there).
• Then return, and say ‘so tell me more about the condition you were born with’.

Then, after all of that, you might get to actually talk about why you are really there. Which by this point the expressions of “really don’t know how to treat you’ or ‘I am really afraid to touch you or attempt to treat you’ is very evident. Only to be HALF treated, because they are too un-educated about AMC and are naturally afraid to do ANYTHING. Which I totally get.

They never truly listen to you about what your saying, about your own body, which they can’t even find research on, well enough to think outside the box of the text-book treatment. Suddenly you are ALL text-book treatment and not an individual person (you get treated less then someone without AMC) who requires totally different types of treatment or to simply be heard because even though they are not familiar with AMC AT ALL, you receive less then basic treatment because you are not the Dr. You only have lived with the condition your entire life, have done more internal research then anyone should ever have to do about their own bodies. Yet when you tell them what you need, you get treated with attitude because, god forbid, YOU actually know more about your own body then any medical book. Even better yet, get yes-ed to death and then get no consideration at all for what you just told them about what you needed and get still get the less than text-book treatment, then on your way.

It’s absolutely pathetic, aggravating and annoying as hell to have to deal with specialists who:
• Don’t listen because THEY are the Dr.
• Can’t see past the obvious and realize you actually are a person who knows your body better then they or any text book they have ever read does.
• Are not trying to be the ‘bossy’ patient by telling them what you need when you have to go to ER.
• Then only to get told things like ‘yes we will make it work for you so it works with your body’ only to receive nothing but the textbook treatments, if your lucky and sent on your way.

This has recently happened to me AGAIN and has always happened, every single time I have ever gone to ANY ER.

Aside from being in any sort of trouble or pain, getting passed ALL of that just to get to the main reason you are there is absolutely ridiculous.

Not sure what the answer is to all of that, or if any of the Drs/Nurses ever looked into AMC further after I left, but if you have a network of Ortho’s/Surgeons/PTs that DO know about this condition, I recommend you speak with them about whats going on. They are few and far between but they ARE out there.

Basically this was to inform those with AMC who have yet to go down the path of needing to go to ER. Those who have, may be able to relate, at least I hope so or I sound like a complete asshole, I can only speak from my own experiences. hahahaha

~ Ted

Get Involved, Teach, Share and Express

So I’m wondering what might cause anyone else with Arthrogryposis from getting involved and sharing their stories of living with this as adults? Is it fear? Shame? Lack of confidence in ones self? I want to hear from others living with this, because how else can we begin to bring true awareness to Arthrogryposis (AMC) if we don’t let go of any and all inhibitions about what others might say, think, or express about what we have to say.

Instead of going the road of wearing shirts that say things like “Take a photo, it lasts longer” or “What are you looking at?” I have seen these shirts and i do get it that they are being sarcastic, as I am with my name of this website. I also see it as a way for mainstream society to feel more comfortable with staring at us, because a joke is being made of it, so its cool, right? Well f#ck that, it shouldn’t be ok for anyone that doesn’t live with this to be able to act in that fashion. If I didn’t have Arthrogryposis then this entire website would be a complete messed up site for me to create.

Think about it, how do we honestly expect to learn, truly learn about our conditions if we can’t completely open up, online, for everyone to see. Especially ourselves, for us to converse back and fourth about what its like to actually be an adult with this and express or experiences, our techniques, our stories and they are not ALL bad or on the negative end of the spectrum. I just haven’t gotten to those topics yet.

So feel free to get involved here, and understand that anyone who does get involved that is judgemental, or mean, or plain out rude, will get removed. This is a place for us to learn without anyone elses interpretation but our own. No one here would ever tell you how you are supposed to feel, how you are supposed to do things, or express things. It is a free forum atmosphere.

So please get involved, encourage, educate, and share.

Thank you,
Ted Houser