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

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