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

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. 😉

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.

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

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Our Lives Our Medical Records

I wonder why are our own medical records are held captive to us. Being that today you can literally find information about anything online, accept for your own medical records. I do not understand why anyone has to go through hoops upon hoops to get their own medical records. Has anyone else had issues trying to get your own medical records.

I could only speculate all of the BS reasons why we are not allowed our own medical records. To have them and send them where they need to be sent. To post them publicly, if we see fit to do so, after all, they are ours. Procedures upon procedures have been established to allow any and all medical records about us, be hidden and kept from our own eyes. Which I simply do not understand, at all. Maybe its because I do not see the ‘fort knox’ mentality of it? Maybe it’s because I strongly feel our medical records should be fully available to us all. Granted I shouldn’t be allowed to see anyone else’s but if I want to see my own, I should absolutely be allowed to do so.

I should also be allowed to make copies, send it to who ever I feel needs them and not be made to feel like it’s illegal to obtain. It’s my life and if I want to plaster it all over the place, then so be it. In this case I want to share all of mine to help others learn from what I went through and see if thats something they need or don’t need. It may even help guide parents in the appropriate way if they have a child with AMC.

Wouldn’t it benefit others with Arthrogryposis to be able to look up what others have gone through? What worked? What didn’t? Who they saw to get things accomplished? What Institutions are the best to go to? I do plan on making all of mine public knowledge, I first need to go through it all and black out places, names, etc. Because that sort of knowledge is not allowed to be shared, it is totally a ‘fort knox’ syndrome and should not be.

Does anyone out there feel the same?

Can anyone fully explain to me what the reasons are?

Truthfully, do these reasons even make sense?

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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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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.

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Shoes

What type or brand of shoes best work for you? How many different types of shoes, sneakers, boots have you tried? Have you tried lifts or inserts in your shoes (if you are on your toes, like I am)?

My feet have been fused 3 times each, to get them in front of me, so shoes that work well with them is not always an easy task. Being I am  still on my toes, I always needed to try and find something with a lift. I found Dr. Martens to work best for me, even though some say they are heavy, I would rather have soar legs from walking then soar feet any day.

When I was younger I did the research and found out those shoes were created by Klaus Märtens, the story goes that he injured his ankle on a skiing trip, that the standard army boots were too uncomfortable and created more comfortable boots with soft leather and an air-padded souls. I thought, well if it was good enough for that guy, they should be good enough for me. I have worn nothing but them ever since.

I will be trying out some new lifts in my sneakers. Hopefully the material being used these days is nothing like the dense, hard material used when I was a kid. Those lifts back then, caused even worse issues with my toes. They gave no resistance and did not mold to my feet at all. Instead they caused more stress on my ankles, knees, and hips. It is amazing how such a small adjustment can literally change everything from your toes up. I will let you all know how they work, what the benefits to them are, and what the benefits may not be. Stay tuned.

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Adventures and Travel

What I would like to know is how often do you travel? How often and how well is traveling for you? Any pointers or things you have encountered that made it much easier for you and less physical?

I will share my experiences traveling to get the ball rolling. I am very interested in your thoughts on this topic, so please feel free to comment and no worries. Thank you.

I know from my own experience, because I work part time with close friends, since my time these days, is spent needing days where I can’t make it to work or need to switch days due to appointments. My close friends have a company that is able to work with me and around my schedule, unlike a company situation. Totally another topic.

Anyway, back on track to this topic ahahaha. I work a part time job and this job requires traveling, on planes. Once I am on site, I am not doing anything strenuous or nearly as close to what I used to do before my spine surgery, but I am very happy to be back doing what I love.

That being said, I have learned to travel as lite as possible, my luggage is the size of a carry on and I still check it. It would completely wear me out to lug that through the airports, lift above my head on the plane (which I could barely do before my surgery and definitely can not do now). I ask for help when I feel I can’t do something, I have asked to be put through security with help because I can not stand in those lines like that anymore without extreme pain. I slowly walk through the airport and arrive earlier then I need to so that I am not rushing because rushing is not an  option for me at this point.

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