“Man Turning into Stone.” Growing a second skeleton where my muscles and tissues turn to bones. Fibrodysplasia Ossificans Progressiva (FOP)

How do you feel about it? Are you worried? Scared? Resigned? Or DGAF and living your best life?
I'll check out your YouTube channel.

the disease will eventually kill me. I lost 95% of my body's movement. The next thing to go is being able to breathe. Theres a chance that I won't physically be able to breathe and die from too much carbon dioxide build up in my lungs :/

I cannot imagine knowing that's in your future.
I've had a quick look at your vids, I'll have a proper look later but you seem to be having fun.
I've never heard of this before, my heart is breaking for you, but I don't think you seem the type to want pity, so I hope you continue living it up as long as you possibly can.

You come to a point in life where its like you can be miserable to the day you die or try to make the best of it because THIS IS IT. I don't have another life or a treatment in my lifetime.

This is a mindset everyone should have, Imo.

Agreed. A therapist said that many are waiting for a version that may not come then you are always waiting. Enjoy what you have now because this may be the best it will ever be. Knowing myy disease, this will be the best I ever will be. I may not li

Not sure if it was intentional, but the end of that reply is comedy gold.

WHERES MY GOLD?!

I don't like paying Reddit for it's virtual currency but I've given you a table slap award which is everything I gots.

Live the best life you can and good luck man!

For everybody reading, please dont give money to a multi million dollar company like Reddit. Donate it to my charity or literally any charity.

https://ifopa.salsalabs.org/inpursuitofacure2022/p/joesoochsfundraisingpage/index.html

I truly don't know how you handle the pain man.I didn't imagine, even with the pain I feel right now. And the knowing that things are getting worse

I'm at a point in my mystery ass disease that new symptoms keep adding up, no answer, and no medication that works except steroids which you can't be on for long...I don't think I'm going to bear it much longer. I'm trying, but it's close. I'm in so much pain. But...I also feel shitty because like, I KNOW it can get worse. In fact, at the rate it's going at, it probably will. And I know that there are many who have it much worse than me...

Truthfully, since I was young I kinda figured I'd go out on my own terms. I've seen people wither from cancer and stuff and become a different person. I think there's fighting and then there's just calling it good enough. Enough of a fight made

I don't mean to minimize what you're going through or tear you down. Just kinda throwing out what I'm going through too

I'm inclined to think that living is just this monkey brain thing that wants us to keep going despite all logic. In my mind, eventually I've had to have animals put down, and so will I for myself. And I think that's okay. There is no right or wrong when it comes to the self. All the arguments against it just seem to be variations of "but it's wrong"

Trying another biologic, we'll see. Humira didn't do shit and now my ears and eyesight are being affected, and every joint in my body. I don't have any hope here. It just feels like it's another drug that won't help. And so far at every single turn shit has gotten worse. My own stupid body destroying itself.

So I'm just wondering... Does my rollercoaster keep going down? Or will it ever go back up again?

I'm very well verse in the disease world. What are your symptoms? it sounds like you may have Ehlers-Danlos Syndrome. It happens a ton in the rare disease to be misdiagnosed and gaslit by doctors.

My health is stable right now but it can drop literally any minute. Tomorrow, I could not be ali

Tomorrow, I could not be ali

O my God OP are you okay?! Did something happen?!

Let's have a moment of silence for Iguanajoe17. He died as he was, a legend. Amen.

Is it okay if I pray for you, Joe? I'm so sorry for everything that you're going through. Sincerely.

Sure!

I'm an atheist so more good will come with a donation https://ifopa.salsalabs.org/inpursuitofacure2022/p/joesoochsfundraisingpage/index.html

if praying worked, there be no diseases or pain unless you think an entity purposely gave me this disease then that ain't cool and wouldnt want to be with that person.

What did the doctors tell you about your average lifespan?

The oldest one live to like 70 ish. Some die at 10. I say the average is around 40ish. With that being said, I wouldnt really want to live that long because my body will get worse as I deal with old people problems like telling kids to get off my lawn. Or watching remakes of movies and saying the original is better.

I’m not even old and I already do that last one.

Nobody better touch the Lord of the Rings. The Trilogy is a masterpiece that can't be topped.

Harry Potter I don't mind. It needs to be darker and less childish.

What are your thoughts on the rings of power then?

I have not seen it. I'm waiting till it is finished with the season. I do say there should be shows in that universe though. They can go with in so many directions. I feel the timing may be a little bad because I think people ar tired of the Game of Thrones type show. With that being said, it got like the most views ever on their respected platforms.

Hey dude, what are your interests what are the things you love?

I'm an extremely creative person. I love video editing and writing scripts for my YouTube channel. it's an outlet for me that I don't know how I would survive without it.

I'm also a very curious person so I love talking to others to explore their journeys.since everybody is dealing with their unique set of problems and how they deal with them.

Is there anything anyone could do, to just make one day brighter/better?

Nudes :) or being roasted or being called a piece of shit ;)

Also donating to the charity who is researching on my disease

https://ifopa.salsalabs.org/inpursuitofacure2022/p/joesoochsfundraisingpage/index.html)

Since you mentioned nudes, are you able to get boners? Besides the, well, unfortunate types of boners that you get.

Also do you get itchy and if so how do you deal with that?

Hell yea. I cant masturbate so im stuck with boners. I made a video about it if I will die from it.

https://www.youtube.com/watch?v=6Xg2VfZYPd8

Have you considered breaking both of your arms?

NOT THIS THREAD

Bro, you are hilarious. You should do standup. Joking not joking. Seriously I was laughing my ass off.

All my videos are kind of like little stand ups. :)

Super personal and you don't have to answer, but is sex work a service that would be useful to you? Escorts? Strippers? Granted those things cost money.

I made videos about it. The idea about is awesome, but I feel I be incredibly nervous and intimidated. Add a timer and I can't just like pull my pants and go. I know I know I am overthinking it too. I think I feel more comfortable getting to know somebody then doing it. I'm also in a tough spot because I'm 29 and never got laid before. I'm very conflicted. Mix with my disability and niche personality, its hard to find a girl that into me and sexually attracted. I seem to find one or the other, not both.

That makes sense, thanks for answering. You're not a bad looking dude, Im surprised you havent been propositioned.

ME NEITHER! Seriously, a picture only shows a small part. Watch a video and its like oh my god. I edit my own vlogs and im still amazed of the body I am in.

I've often wondered if I'll die from masturbating too much

Well all the kids definitely didn't survive...

Lol I’m a mom of teens; my nudes will fuck you up lol 😂

The charity I can do. Will check it out after dinner (U.K. here)

Edit: (Also shit is squishy; not a legit burn. How about ‘bonehead!’)

Seeing boobs is always a good day. The reason why guys build *waves at everything.

Poor guy didn't specify. He's going to get flooded with dick pics.

Got plenty of boobs in my inbox :) Chef's kiss <3

Send bobs pls

WHOLE LOT OF A BOBS

hey its me the 901st person with fop i could use some nudes too

The dick pics wave is coming your way!

No nudes for you - the last thing you need is more bones!

Seriously though, more power to you friend.

Why am I crying at my desk rn.

Is no-one going to touch it?

I wouldn't call you a piece of shit, you can polish a turd, you however.... have the personality of gold which shines brighter

Complements??? Get this person out of here! ^{thank you <3}

I wouldn't call you a piece of shit

Allow me......u/Iguanajoe17 you're a piece of shit.

Let's goooo

Do you have contact with any others with the same condition to chat and share problems?

I know a lot! With that being said, it doesn't matter because we have problems that can't be solved. At the end of the day, it is hw you handle the new normal. Nobody can say any magic words to feel better. Also my love language is being roasted and not too many out there! I know I know something is definitely wrong with me ;)

Sorry, but I prefer my roasts to have less bones.

LOVE IT. Never heard of that one before

Honestly it must be petrifying!

Ok im going to hell sorry OP just couldn't resist! <3

I'll save you a seat and a drink :)

If you were my mate I would totally organise a proper roasting for you…even if I found it tough initially.

Surely the hardest part is getting the wheelchair into the oven..

hahaha That didn't stop Hitler.

Until he finally got the gas bill

I see what Jew did.

That is such an amazing mindset to have. Have you actually had friends do a roast for you? I’m sure it would be extremely hard for anyone to do that to you but I applaud your demeanor and sense of humor! Sounds a lot like mine- self deprecating humor. I don’t have any other questions, but just want to thank you for doing this AMA. You have an incredible outlook on life. Thank you for being you.

I don't have enough shit friends to roast me. It's a combination of me being disabled of why anybody want to put me don/not knowing my personality. Also I'm ruthless with the roasts so its hard to meet at my caliber.

Cheers Joe. If you like being roasted you need to get more English friends!

Just call me Ted Lasso!

Hey man, so sorry you have to go through that.

I read through some of the comments regarding the pain and I have to ask:

Would you ever consider going through assisted suicide?

I only ask because I saw when you wrote this:

The next thing to go is being able to breathe. Theres a chance that I won't physically be able to breathe and die from too much carbon dioxide build up in my lungs :/

To me that sounds incredibly scary and I certainly wouldn't be able to cope with that. Would you let nature do its thing or would you do the latter? Sorry for such a blunt question my man

I made a pact like ten years that if something worse happened, I would kill myself. I'm still here with a lot of shit going dow. Losing the ability to walk and eat.

Killing oneself is extremely hard. Objectively why would I want to live. Add feelings to it and gets complicated really fast.

I'm wired to want to keep going. Like no one can stop me. At the same time, there are a lot of things I lost and will never experience. I think disabled people are almost mentally ill to want to keep going when the entire world is against them.

I think we all living on hope that it will get better.

This is so fucking inspirational man. Been struggling a lot mentally and this just gave me hope and a massive boost I never thought I had.

Thank you, from the bottom of my heart <3

Use your username for inspiritation! Anticipate me! Get your shit under control and anticipate me mofos! *Injects good vibes into your veins

If you had to change one thing about your posture what would it be?

Move my neck so I can be looking more forward. Right now it is looking upward. it prevents me getting a motored wheelchair since I cant see my feet. it's also annoying because I have to sit sideways to see people at an eye level if im at a table eating.

Did your neck just happen to lock in that position suddenly or did it kind of just stiffen up and move to the point where you couldn’t move it to a more natural position? Also, you’re a rockstar with such a great attitude. You seem like you’d be fun to hang with.

I was young so I don't really remember but most likely just woke up like this :(

Regarding the use of a motorized wheelchair, would it be possible to use a camera/monitor setup so you could see what you needed to see, or would that simply be more trouble than it’s worth?

I can definitely do that, but I dont think its a viable choice. I live in nyc so dealing with the hustle bustle of the streets and people. I definitely tried even with prism glasses. I just cant do it. A part of me is not having the ability to see like a person wouldnt drive a car looking through a screen. it's weird I can play video games okay, but in real life I can't.

Even more simple than a camera, could you just get a wide mirror, like a school bus driver has, and mount it overhead of the motorized chair? Angled so you can see your feet? You're really cool and inspiring btw :) If I were half as funny as you, I'd have friends lol

its good as a reference, but very hard when you rely on it all the time. It's a weird mind fuck thats very hard to explain.

I actually do have more questions, I am quite intrigued by your demeanor and sense of humor!

Who are your favorite comedians? What are some shows/movies that genuinely make you laugh?

I got more answers!

Gotta go with the legend George Carlin. Andrew Schultz is amazing. Daniel Tosh is really great.

Arrested Development is really great and extremely witty.

There are dozens of us!

Damn. just blue myself.

Are you into Doug Stanhope? I went through some heavy shit last year (..nothing compared to the size of your boulder, friend) .., and his comedy was one of few wavelengths that caught me where I was at and made it a little better. I’m sorry for your struggle, man, but I’m glad to know you’re finding whatever joy can be had in the moments we do have. Peace 🤍

Doug Stanhope

I have not but always open to seeing new stuff!

Are you constantly in physical pain?

Yes. My scoliosis back and ribs. Also my body atrophying so I can't really work it out the way I want. I can't really exercise because it may cause a flare and cause more bones to grow. A really fucking bad catch 22.

Is there anything at all that you can do to mitigate or help prevent the pain? That sounds so horrific, I’m so sorry.

You can take pain medications to help. I dont take any because I like to be extremely sharp and pain medication throws you off your game.

I think the trauma of me not being on pain medication growing up and hiding caused my pain to just ignore because I won't get relief. I'm a pretty strong and stubborn mofo.

Wow. Thank you for sharing. That is a big sacrifice, but, you seem to have mastered mind over matter. I never thought of it in the way of wanting to stay sharp in lieu of being more comfortable. That’s so admirable.

My brain is my greatest asset then something else.. Behind a computer, no one cares about your disability, but what you can bring to the world. Will do nothing to take away my greatest asset.

First, thank you for doing an IamA! So few people know about FOP that nearly all donations come from friends and family, and there aren't that many. (Obviously you know this, just a hint to anyone else reading these comments).

I've got a friend who is an FOP patient, and it's heartbreaking. Things seemed so promising back when they isolated the gene. Fred Kaplan even asked my friend which joint he'd want unlocked first when there was a cure, and Doc Kaplan would never have said that if he hadn't believed it would happen.

I guess I need to ask a question. What is a misconception someone would have when they first meet you?

That I am extremely intelligent and articulate and funny. I'm very knowledgable on a lot of topics and empathetic and personal. it could be some of the reasons that my Youtube channel is monetized because only .5% of YouTubers get monetized.

How hard is it for you to type?

My arm is fixed up so I have a keyboard on a vesa mount at the height of my face and type one handed with the back of my hand. I cant turn it and thats how I type ever since. From device to device, you need know I have a disability. Thanks Apple and Microsoft for pushing technology forward!

I am an web and software engineer and I have been pushing my teams for over 14 years to make sure accessibility is as important as anything else.

Unfortunately, most clients and leadership reject it because of costs. But there have been some judicial precedent set over the past few years that has them crying and asking why their sites aren’t WCAG AA standardized. Many of them, that passed us up because of costs for accessibility have been sued and they come crawling to us to fix it.

If we had built the app or site initially, we probably cost about 2% more for accessibility. Once sued, they had to pay over $20k in legal fees and another $30k to make their existing app accessible. It’s much harder to retro-fit accessibility than it is to plan it out beforehand.

it comes down to money unfortunately. I think people underestimate how many disabled people are out there. Just because you dont see them doesn't mean they don't exist.

​

Tank you on behalf of the disabled community for trying <3

Do you have any problems with your eyes and eyelids? Thinking past your hands becoming non mobile, could you get a camera augmented? Keyboard that relies on sight?

My eyes will not be affected since it's a smooth muscle. My body ignores smooth muscles. I cant imagine getting any worse but I said that dozen of times and things got way worse lmao cries*

Imagine if you stuck your tongue out at somebody and it got stuck that way

Like this? shit shit SHIT

I think you mean thit... Thit... THIT!!!

Call down Mike Tyson.

I know there was one women with the same condition who donated her body to a museum to display her skeleton. Is what happens to you after you die something you've thought about? And what plans or arrangements have you made?

Also, I just want to say, you seem like a super fun guy from these comments. Please keep on rocking

I want to donate my body to a body museum so I will die a legend and live forever. So I hope you visit me :}

Did you have a "choice" with the position you slowly got stuck into? Or is it random?

Just random. There are people who can touch their face, some you cant. Like I can touch my noise but I have no idea how my hair/head feels.

​

Some are more in a sitting position and some in a standing position.

To rephrase their question slightly, did the ossification push your neck into the position it’s in, or did it lock that way one day and hurt too much/was impossible to look down?

If you had managed to set things up so you were always looking straight ahead, would your neck have locked in that position or moved you to where it is now?

When your body swells, it like puts you in a position that is most comfortable. The body swells so you don't move that body part. Bone grows and locks into place.

Some have worn a brace to lock a body part in a position. It can be extremely painful to force the body to do this while your body is doing y. At the end, you just want to be comfortable through the flares and deal with the aftermath however you can.

Seeing this AMA this was something I was wanting to ask you, whether it would be possible to lock a body part in a certain position. Especially since I saw another if your comments that said something about the position your head is in. Glad to see I read on before asking!

Is it possible? Yes. it will be extra painful on top of what the body is trying to do. People have done it twenty years ago. These days it is kind of considered inhumane, but I do get the reasoning.

im sure it happens in their world country and people not understanding FOP.

When was you first diagnosed with FOP? When/what age did it begin to effect your physical health and mobility? When did you or a family member/friend realise there was an something wrong? Do you work/in education? Do you have a full time carer?

Since birth basically. I was able to move all my limbs. Year after year, I lost movement everywhere. At 29, I lost 95% of my body's movement. :(

I am like a tech director for a women's charity. I also do podcasting and YouTubing. Since I am monetized, it is my job too. I just got monetized so im super proud about that! On'y .5% of YouTubers get monetized so for me to be part of that percentage is like fucking wow! I DID THAT.

My mother had a very different death sentence but died while on some next tier pain relief. Even her death rattle was oddly peaceful. Do you have preemptive plans to check out mentally in the end or are you resigned to face it as it comes?

Do tons of cocaine at a strip club.

Do you have any regrets?

When I was more mobile in high school, I wished I stopped waiting for other people and just do things solo. I didn't realize that these people really didn't matter but at the time you think its your whole world. I was really not wanted much when I was putting a lot more effort. We were together because of geographic convenience. it would have helped with my deep depression and finding myself and find a crowd that liked me for me.

I did a report on FOP for a college Anatomy and Physiology final in 2006 or so, and the outlook was pretty grim back then. Obviously medicine has progressed by leaps and bounds since then, especially where genetic disorders are concerned. Have there been any hopeful advances with the treatment of FOP?

a Treatment has been approved in Canada. or close to it. The treatments will help kids a TON. For adults, it just might be too late. There might not be enough muscle left if you removed the bones. We still have a ways to go unfortunately :(

At this point, I raise money and advocate so the kids do not have to suffer as much as I did and to live a normal life. a dream is to say that FOP will cease to exist and more just become a nuisance.

That's great to hear. Do you have a link to more information about the treatment perhaps?

Thanks for answering, and thank you for doing work to raise awareness and support for this disease.

https://www.ifopa.org/fop-news

here you go!

Would you ever want to be turned into a cyborg?

If only I can charge myself by putting my dick in a charge port hahahaha

Hey, I saw you on SBSK and followed you on IG because I love your attitude towards everything. One of my first internet friends from 2002 had FOP and he was one of the coolest people I've ever known. What's one thing you wish you would've known when you were a kid when it comes to FOP? And what's your favorite book? Also, I would send you nudes, but I'm 40 and pretty gross. Would you accept pictures of my cats instead?

There is nothing you could say. You think a kid would believe you?! I just wished I knew my worth earlier and to stop trying so hard with people when they didn't reciprocate. Accept the situation and move on. Not worth being mellow about it.

If you actually turned to stone like seeing Medusa, where would you wanna be and what pose?

The Eyebrow Raising Rock Pose or the Ric Flair strut

Do you ever feel like you deserve more than Dwayne Johnson to be known as 'The Rock'?

NO WAY I am fighting him for that name.

Does it hurt as much as it sounds like it would hurt? Also, is it literal or is it more of the same tissue taking over but nothing visual. I’ve never seen with that she does and I’m just curious if that’s too big of a question or considered rude or something please ignore it.

Some of the flares are not too bad. The flares in may hips and thighs are pushing knives into it. Add also the mental element to it as life just stops around you. it is just so painful and literally no one can do anything to stop it. :(, I hd to do it twice and each flare lasts about 2 years.

That sounds like something very few people have to go through in any context. What has made you keep on when most would not have lasted half this long do you think? What is your go to way to cope?

Thank you for answering. This ama can’t be the easiest thing

Through it, nothing. When your health is stable enough, just create some small goals and long goals that are realistic. Slowly build up your confidence and eventually things will look better. This may take years and may fall back, but just focus on the long term goals. Bad times dont last forever. Just keep moving and stop talking to people if they weigh you down. You'll create more time for people who actually matter

Your interview on SBSK was one of my favorites I've seen, and yours was an attitude towards a (currently) incurable disability that I really appreciated.

You said you don't think God exists because you don't want to believe in a higher power that would allow such horrific diseases to happen to people, which is completely understandable to me. I noticed a lot of the interviewees on SBSK bring up faith as a big reason to stay positive, perhaps because they believe in some sort of afterlife where things will be different for them.

When did you fall out with religion, and what affect did that have on your outlook for the remainder of your life? Did you struggle with losing faith, or not really?

I think people generally need to believe in something. Believing in luck and chance is not a physical thing if that makes sense.

it just when you think deeper then it's like God gave me this disease for x reason. People then gaslight or make up any reason to justify x action. it gets tiring and confusing that you rather accept then really think about it.

I stopped believing through my second health fiasco when I was on bed rest for 2 years. I just had a lot to think about it and religion just didnt make sense. Extremely weird, but at the same time my necklace cross broke. Also had a cross on my window; it fell and broke into two. I guess it was a clear sign to be an atheist. feels it affects my mental health instead of wondering what God has in store. Now I just say, only me can make something of me. Nobody else.

I remember seeing a documentary about this when I was a kid and it scared the fuck out of me especially the part in the documentary where the 12-year-old girl met with elderly something-year-old people, and I had to choose between standing up for the rest of her life, we’re sitting down, so I guess my question is, did you choose to stand or sit??

its a myth.. You don't get to choose, your body will just put you in any position it wants you to :(

Have you been to the Mutter Museum?

I learned about FOP there... https://muttermuseum.org/exhibitions/harry-and-carol

Yes and when I die, you'll see my body in a body museum somewhere or in a trash bag.

I'm going to go to hell for this but I have to know, was Medusa hot?

Shocked face

Hi! So it’s almost 10pm here in the UK and I’m sat reading your replies before bed. I’m really glad to see your outlook and determination and hope to carry on doing what you enjoy, which I think is pretty heroic! So …if your my hero, who’s yours? Best of luck for the future and congrats on your YouTube channel I will follow and learn.

Good night!

I don't think I have one. I set my own bar and go for it. Only me knows my limits.

I appreciate that you don't do the toxic positivity thing. It always seemed so hollow to me. Alice Wong, a disability activist with spinal muscle atrophy is very frank about things, as well. You both have a lovely, authentic way of writing.

I also live in NYC, and 2 years ago I broke my leg badly. Suddenly, a huge chunk of the city just wasn't accessible to me. Elevators hardly ever work in subway stations, the flooding, the endless stairs...Do/did you enjoy the city? What's your experience as a New Yorker been?

I don’t do subways just because of elevators not working. Now it much more dangerous. I have no way of defending myself. In Manhattan it’s pretty great getting around except for hills. Outside where it gets sketchy.

You’ll never understand how inaccessible stuff until you are in. All somebody needs to do In be in a wheelchair for a week and so much woukd change instantly.

Hey, out of all the SBSK episodes ive seen, yours is the one that resonated with me the most. because yours was the only one ive seen where the person being interviewed was candid about their disability.

You said something along the lines of you don’t believe in toxic positivity and you were honest about the fact that you have this disease and that its unfair and it totally fucked up your life. I still think about that interview alot. Sometimes i wonder if the toxic positivity is a form of denial or a coping mechanism.

I sustained a severe burn a while ago. It was very painful but the hardest part was the lack of control. I had no control over the situation. I was at the mercy of the nurses and doctors. If i didnt have a hospital to go to id be in a bad way. I had to lie in bed for a month and just heal. The lack of control was difficult for me. So i cant even imagine how difficult your condition must be to live with for you. The lack of control in particular. (Mind you, im a huge pussy.) When i was going through it i thought about that interview alot. all this pain and lack of control and fear of your body changing and the inevitability of an eventual death i imagine you must feel, i assume gives you a unique perspective into the philosophy of life, death and meaning. Do you have any insights you can share? Whats your philosophy? Whats really important in life?

Sorry if this sounds corny, and i know you didn’t ask for this condition, but i cant help but view you as brave and wise for fighting through this. Are you the unluckiest guy alive because you have this condition? or are you the luckiest guy alive because you have this condition but youre still alive, against all odds, and helping others despite your own challenges in life? Do you believe in a higher power or destiny/ fate?

Hey! Sorry about your situatshit. I think its great to see others doing well but really you just try to cope what you do have. Social media is fake. Many are struggling from day to day. I struggle a lot too but I can't show it because dont want to be surrounded by that. Understandable.

I dont believe in anything. I was just dealt a bad card and have to play the cards I was dealt. Could believe in religion and tell yourself you have a purpose. That lie is more comforting than the truth since its very hard to swallow. I totally get it. I dont want to think. I need a clear answer and not have to question my faith if that makes sense.

People have good luck or bad luck. the results will be the same whether you pray or not. if you are a good person, why would that God be mean to you if you didnt believe. it does not make any sense.

So.. how many nudes did ya get after this ama ?

Not enough!

Since you're stoned, can you get stoned? As in THC.

also, I hope you get to take some psychedelics like mushrooms during this time!! There is a study where terminal cancer patients were given psilocybin and they had a profound experience.

I can definitely get high. I tried in college but it never did anything for me. Now I dont do anything that will affect my lungs.

​

I would love to take mushrooms but only if im in a safe environment with good people around it. I would love to film it and experience it.

Do you play videogames? I know Microsoft has a highly praised Xbox controller made for people with disabilities.

I actually just use a regular xbox controller. I put the controller in the palm of my right hand. Use my chin to control the left analog stick. My right thumb to control the right side and axyb buttons. my other fingers for the triggers. Works super well!

Damn dude, can’t imagine how that plays out. I mean I’m getting my ass kicked by 13-year-olds and I’m holding the controller ‘normally’ X’D.

Maybe I should try it your way :-)

What games do you play?

I achievement hunt now in my free time so right now Lego Stars the Trilogy. I know not very exciting.

Are you going to end it yourself at a certain point (including euthanasia which i don't know if you have access to), or let it take its course?

Sorry if that sounds like a callous question but I figured you don't want pity or empty platitudes

It' not legal in my country. And I don think I can physically do it if you gave me a button. ITS SO HARD because you think maybe it will get better. humans are kind of dumb that we just live on hope. Even if it is just 1%.

Two things I'm curious about:

1. Do you weigh much more than average due to the extra bone?

2. Do you have to ingest extra calcium in order to fuel the growth, and if so, what would happen if you didn't?

I weigh a lot less because muscles weigh. I weigh 108 pounds which is super light for a 5 foot 8 person.

Not sure if it would work but if you replace one or all of your arms with mechanical ones would it give you more mobility?

Possibly, but there are too many unknowns. The technology isn't good enough for mechanical ones. and you measure once, cut once..

I'm really sorry for you having to go through this. You come across as an intelligent and genuinely funny, creative person, the kind the world needs more of. Is there anything this disease has brought that can be seen as positive?

That it's possible to accomplish things if you put hard work into something. Like my YouTube channel, I fought through adversity and the way I look and I can develop an audience to where it could become my job. More of if somebody says you can't do something, its more of why not. if one person likes me and listesn, why can hundred or thousands or millions like me. I go with that.

What happens if you have a severe calcium deficiency? Does bone still continue growing but hollower/weaker?

Yes. I was shown to have weaker bones as I grew older so I have to take some medicine.

Could this be related to vitamin D and vitamin K (a deficiency or problem metabolizing), since these regulate where calcium is distributed in the body?

nope. my body repair mechanism is faulty. It should muscle being repaired with muscle. Not bones. So my body will just keep growing bones till the day I die no matter how painful or how much it will fuck up my body. It is its own worst enemy.