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.

AMC Awareness… It’s Our Story

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

AMC Support Linktree Social Links

#WearBlue #AMCawareness #ItsOurStory

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

#WearBlue #AMCawareness #ItsOurStory

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

Workout

I was always a fan of keeping my core tone, as much as many may think I never worked out, or ate a lot, the truth is I never really felt the need to tell people about it. Since todays craze in the digital, social media footprint is to let people know that you workout but to even show them screenshots of the workouts & maps to where they ran/walked/biked, here it is:

Be fore my 2013, I never really walked distances, aside from working trade show events. Anyone that has ever done that, knows you definitely get your steps in working at convention centers. I did however always worked on my core & used my own body weight to keep toned & my muscles active. As a Professional Graphic Designer, most of my time is sitting on my @ss, so it was always important to me to continue a workout routine & constantly stretch, ling after I left Alfred I Dupont in Wilmington, Delaware. I simply never shared it or talked about it, because it never even crossed my mind to do so.

It turns out that me keeping up with all of that was very beneficial when my spine started collapsing on itself in 2013. Keeping my core strong was a key element to my physical recovery & I have recently begun a new routine.

I started using an app called Just6Weeks. It has the features I was looking for, along with routines that can be scheduled & work at my own pace. I was looking to keep my core tone along with upper back & arms & this app works for me.

I also began weekly walks at the strongest pace I can, taking the longest strides to help maintain & gain back a strong tolerance in fatigue (ever since the spine surgery, fatigue in doing anything was a constant battle). For this I use MapMyFitness, it records my walks & shows maps, with information about each walk that help me improve each week. For me, it also is somewhat of a push because I can see where I was stronger & weaker which helps me make adjustments on when I walked, was the weather a factor, was the time of day a factor, washy pace quicker or slower, what was my distance, etc. etc. 

As anyone knows with AMC, proving theories wrong is what we do best & I am a firm believer that if you think you can do something, you are right … & if you think you cannot do something, well, you are also right.

This may sound strange but I also encourage myself before each workout session by telling myself things like :you got this” “you can do this” “own it” beforehand to set my mind in the mode I want it to be in.

I also do this trick for a workout where you are counting to a specific #, as in push-ups or sit-ups – I count down instead of up & towards the end I also think about & vision myself a few #’s ahead.

It sounds strange, I know for me though, it works. Before I know it, I have reached the goals of the #s setup by the Just6Weeks app. without feeling overly strained & I think it is a complete mental game. If I’m close to reaching the end count & don’t trick myself by thinking ahead or even beginning to count up, then those last few push-ups are the most difficult to accomplish. However, when I began using those mental tricks, as I was counting each one down, I noticed those last few were not as difficult as they used to be because I had already envisioned myself being there.

~ Ted H.


Here’s seek screenshots of what Just6Weeks shows you as you begin their routines & also a screen shot of what MapMyWalk displays:

Just6Weeks:

MapMyWalk:

Specialized Physical Therapy

Specialized Physical Therapy

At SPT, we emphasize a hands-on individualized approach for our patients. We stress quality of care not quantity of care allowing us to achieve the optimal results that you need and deserve! Our clinical staff are highly trained and skilled and are ready to help you improve your quality of life.  Read our BLOG.

If anyone in the S. Jersey, Cherry Hill, Burlington or Princeton areas & are in need of PT, I highly recommend them, very professional, knowledgeable & relaxed sessions…  #SPT

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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