IamA quadriplegic female who just got her Tracheotomy tube out AMA!

You're beautiful!

Well thanks!

You're very welcome, and i hope you know i mean that, for real

Well I appreciate it.

That is my worst fucking nightmare. It reminds me of a short scary story. "They had successfully completed the first cryogenic freezing. He had no way of telling them he was conscious."

I love reading AMAs from people with disabilities (not that I want people to be hurt). Puts so much into perspective. What's been the biggest readjustment in your life that people never really pay attention to and take for granted?

That's a good question. Probably all the ways I figured out how to compensate for my hands. Since I came out of rehab extremely weak, no one taught me how to do things. Little by little, as I got stronger, I started to wonder how I would feed myself, brush my teeth, text, and so on. People just assumed occupational therapist taught me and because I don't want to sound prideful I just keep quiet.

As a licensed PT who works in a rehab, I'm pissed that no one went over those things with you. They didn't do their job well.

I know. I guess it's not entirely their fault. My insurance only paid for 2 months. I could barely move.

2 months. You pay insurance so that you can be taken care of when terrible things happen, and your insurance company repays you by giving you two months to completely recover from losing control of 4 limbs.

I really fucking hate insurance companies.

Tell me about it. I blame them way more.

It always upsets me when I read stuff like this, coming from a country with free healthcare. How is it ethical to treat people like that? I know that a whole other can of worms for another thread, but damn. I hope your recovery is otherwise going well :)

I can only hope the states are heading that way.

Fucking obama

Oh Obama...

That absolutely sucks. I'd be so pissed if no one taught me that stuff. But you seem a lot more clear-headed about it than I would be. It's good to see you're making it through day to day life, though. I might have nightmares of waking up in a surgery though.... thank you for answering!

No problem!

Hi there, I hope you're feeling alright! What was it like to wake up during the procedure?

Scary. I could feel them taking out the ventilator and cutting my throat. I tried to move but I couldn't even open my eyes. I think the only reason I withstood the pain was because I asked for a shot of morphine right before.

You may not be able to walk, but you still somehow managed to run away with my heart. You fox, you.

Oh you...

But seriously you're a babe

Thank you.

Why is the stoma temporary? Will they replace it with something else?

Normally a stoma is suppose to close within 24 hours. In rare occasions it heals incorrectly. I now need another surgery. Just my luck I guess.

You mean your body just..takes over what doctors put in you?

Could you reiterate?

So is it just a hole they put in you? There isn't a plastic tube or anything? I mean, don't you need doctor's help to make the stoma go away?

There was a tube inside the stoma. It was three inches. Usually a stoma closes like a piercing. Mine didn't.

So does the tube eventually fall out like ear tubes?

Naturally

No

I have heard someone people placing a ping pong ball bandaged over the stoma. It apparently helps with the healing process ie it all heals evenly. This was maybe a decade ago and I couldn't find anything on Google. You could trying asking/searching on Care Cure Forums http://sci.rutgers.edu It's a great SCI specific resource if you aren't on there already.

Wow this is great! Thank you. I'm so going to use this.

Are you able to masturbate? How do you handle being aroused?

I don't. The injury blocks my "urges"

Just do it for fun, next thing you know it activates nerve endings in your body you didn't know you had and you start moving normally and all. Do it.

I agree. I should, I will.

Rats. :( Please ignore my previous comment.

What comment? ;)

Somebody said you were beautiful, and I replied "I agree, plus I imagine your quadriplegia could play into all kind of fetishes of mine! :D"

I'm sure it will be down-voted so far you won't be able to see it. Plus, after I read a bit further down in the thread I felt a bit guilty after learning some of the horrible details of your condition.

Not really sure how you feel about it, but I wasn't trolling. You are attractive, and if I met you in person I would be interested. :) Not much point if you don't feel sexual desire tho, all my kinks involve the other person being into it as well. ;)

Who knows? It's more mental than anything else. I think I need the intimacy part of it.

I do too. Plus, I should think the level of trust required of the other person would be much higher than someone who could move. Women are already disadvantaged when a sexual encounter goes wrong for a variety of reasons, but not being able to move... :( Terrifying idea.

Anyways, you seem cool. Good luck, and thanks for the AMA. I found it really interesting. :)

It is. I need trust. Well thank you.

I'm just going to go with the easy one here. How are you typing?

I weave a stylus through my fingers and use my tablet.

Now I'm confused...do you have use of your arms?

Yes Biceps work fine I lack triceps and finger movement.

I don't want what I'm about to say to sound absolutely awful, but hear me out: Have you considered prostethic hands? If you can move your limbs, some prostethic hands could be attached to nervs meant to move other parts of the arm, you would be able to grab things, and have some improved dexterity and autonomy. I know it it sounds weird to voluntarily lose a hand, but if they are not working ...

Also, keep good care of your body, this field is advancing right now, nerve / spinal reconstruction should be a possibility within the next 20 years. You are young, and you are living in incredible times. I'm sure you'll get a second chance.

I'm not sure prosthetics will work. The nerve connection is missing completely. It works for amputees because their spinal cord is connected so the pathways make the connection to the brain and the arms. It would be no better than what I have now.

I too am quad. C5/6 I figured out a way to use a knuckle to type. Awesome to see you come off the vent! Congrats!

I did that at first too!

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Being a quad is incredibly difficult. I depend on others for so much but I love life. I have a sense of purpose and I know I can do so much to help others with disability. It's all about your state of mind. I'm pretty strong so depression has never got to me.

While I love the fact that you are able to maintain a positive attitude through all of this, depression isn't something that happens to weak people. Depression can happen for a variety of reasons and none of them involve being weak.

That was ignorant of me. I understand that so much goes into depression. It was a thoughtless comment. If anything I'm lucky I didn't go through depression. I apologize.

Yes, please tell this to my MS caused quadriplegic uncle whom suffers from chronic seizures and a recently failing diaphragm. I wonder why he's depressed.

Disabled or weak people are especially susceptible to depression. Obviously depression is not exclusively for "weak" people, but of course some cases of depression do involve being weak. How can it not be?

I very much congratulate /u/Quadrupleawesomeness for being so positive as I feed, move, put to bed, and my own quadriplegic uncle many times a week and I see the effects that being disabled can have on a person. You are very inspiring.

Thank you. My heart goes out to your uncle. It's saddening to hear this but I'm glad to hear you've stuck by his side. I'm just trying to live my life as best as I can.

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No problem.

As someone who dated a quadriplegic I can bet you are happy not to have to have your trach suctioned daily :) It looks like no one has asked this so far in this thread so I guess I'll ask this: Did it happen in a car accident? Was alcohol involved? :/ What age did this happen? The poor girl I dated just turned 18 and graduated high school a few weeks earlier, only to find out she will only be able to move her head and some of her shoulders the rest of her life :( Her friend driving drunk caused it. Oh yea! I can't remember the name anymore but are you using the suck and blow system with on screen keyboard to type? Hopefully they have made some decent voice to speech software by now to assist!

Just remembered: The jouse 2! Are you using anything like that?

I can move my hands just not my fingers. I don't need my mouth for assistance. Exactly what happened to her happened to me but she must be c2 c3.

Oh wow, in a sense you are very lucky then! Could have been so much worse.

I think about that a lot.

Im sorry if this is a stupid question but is you're condition only limited to your limbs or is there more to it with digestion or possible heart defects ?

Well, digestion is normal. My blood pressure is affected. It can get so high that my chest and face turns bright red then so low that I see black for 1-2 minutes straight.

I understand that for sure i was in a car accident and the shock caused heart palpitations and as a person who has high blood pressure i know the feeling seeing black, When you get emotional does it do the same thing as well ? for me it does.

No it does not. That's interesting... Mine just happens when I'm in pain or get up quickly. I wonder why your emotions affect your heart.

Pretty sure emotions affect the heart because anger, for instance, causes your heart to race. Emotions are connected to the hypothalamus, which then can cause bodily reactions by increasing certain chemicals. When in anger, it can trigger the heart to race so that you can act upon your anger or something like that

I wish both of you the best of luck in your recovery!

That makes sense. I didn't give it much thought. I hope you feel better as well!

Are you in pain? What do you take for it? Are you able to live pain-free? Is breathing an issue? Chest colds?

I read your prior AMA, and was impressed.

I'm always am in pain one way or another. My muscles hurt and my legs are on fire. I take neurontin for the fire sensation. Breathing is ok as long as my lungs don't get clogged with phlegm. It's hard for me to cough. I have techniques to unclog my lungs. Thank you, I try to be as honest as possible.

As a person with cystic fibrosis I'm curious about your techniques to clear your breathing. Do you use "the vest" or some sort of chest PT?

I don't. I put my chest to my knees and let someone pat my back. Gravity does the rest. I also cough as best I can as someone pushes on my diaphragm.

That's chest PT :) I do the same every night except I do it while laying in my side.

Oh lol. Sorry I forgot the terminology. I don't use it as much anymore. Try chest to knees once it might help. Let your head hang below your knees if it can. It helps. I discovered this by accident. Its saved me a few ER trips.

Yeah, I do it on my side so we can hit above the "problem spots" and try to clear the lower lobes better. Most people don't have any phlegm in their lower lobes though. I'll try it though, see if I like it, I can add in in.

Well feel better! It must be hard to breath. Hopefully a cure will come soon.

Besides this permanent sensations, do you have sensitivity? I mean, If somebody touches your hand, you feel it but can't move or simply can't feel it at all?

Also, do you mind if I ask about your accident?

I have movement of my arms just not my fingers. I feel until you get to my hands and then it feels as of i sat on them too long and they fell asleep. The rest of my body bellow the top of my chest feels the same.

What about proprioception and other senses in that area? are you aware of your lower limbs and their position (without looking) , for example?

Regarding my other comment about prostethic hands, I understand the nerves going to your hands aren't working, my point was precisely that many prostethic hand receivers don't have those either, what they do is attach hand movement commands to other nerves you do have.

So, for instance, in order to open your hand what you actually do is try to move your shoulder slightly forward. That becomes a "click", you then use different click patterns to activate different hand functions. As long as there is some kind of communication, a protocol can be used to transmit more information. There are way too many muscles in your arm that you can move independently, and you don't necessarily need all of them to have proper dexterity on your arms. You would be just remapping functions. Think of a keyboard with a broken "a" key, so you remap "F3" to "a". Sure, you lose the F3 functionality, but it was not as important as "a". Pacients with such attachments say they get used to it relatively quickly.

Watch this: http://www.youtube.com/watch?v=Ie0ZOlUM7e4

That's awesome! I'm not aware of the positioning of my limbs.

Ah, here is the user explaining how he controls the hand:

This is the new iLimb Pulse prosthetic hand. I've been using it for about four months. You can tell the hand to switch to up to four out of eight available grip modes or grip patterns with an included software. The software connects to the hand via bluetooth.

I use a co-contraction for changing from the default grip mode to wrist rotation. That means that I send a simultaneous muscle signal to both electrodes. That is very useful for a lot of things, for example pouring drinks.

I activate my second grip mode by sendeing two quick impulses to the opening electrode. My second grip mode is called precision pinch.

It moves the Index finger in opposition to the thumb. It is very useful for picking up small objects.

My next grip mode is called index point. I activate it by sendeing three quick impulses to the opening electrode: One, two, three. It is very useful for typing.

My fourth grip mode is called thumb park. I activate with a open signal that lasts more than two seconds. The hand then parks the four fingers and only moves the thumb. That is very useful for donning and doffing clothing.

In summary, I can tell the i-Limb to do five differnt things: Move all fingers, rotate the wrist, go to pinch mode for picking up small objects, point out the index finger for typing, and park all fingers but the thumb. Each mode is associated with its own control signal, so there is no "cycling through" modes. Any mode can be activated from any other mode. It is the most advanced prosthesis that I ever had and it has drastically improved my quality of life. Thank you, Touch Bionics!

Is the person paralyzed

Also, I know many of this technologies look crude and rudimentary right now, but we went from 0 to 100 in that area in just 10 years. Imagine what they'll be in another 10.

I can't wait for the future.

Oh and DUI car accident The link is in my other AMA

Yeah, I just read that.

I hope science eventually allows you to walk again, and when you do, the first thing you should do is track down the asshole that was driving and beat him to death.

He's my friend. I forgave him.

You are too kind. To be honest, I've done every crazy thing you can imagine on a motorcycle, and I tend to drive like a maniac, unless I have a passenger, in which case I'm the most responsible driver you could imagine. I can decide to risk my life or safety for the sake of fun or whatever other reason, but I would never risk somebody else.

I assume he's at least helping you and paying for your therapy?

Well he does what he can.

Just throwing this out there: You're hot.

Thank you.

What are your goals/ambitions?

Become an experienced and well respected designer who is known for beautiful yet accessible homes.

RT here, congratulations!

I work primarily with peds on vents and get them out of the hospitals and to home, most of my patients are long term and/or for life. The ones that eventually do get the vents discontinued is wonderful , but the few that get decannulated make my day.

edit: Just realized we are practically neighbors, I live in the Valley area.

Well howdy neighbor! I'm really happy. It just makes me feel that much more "normal".

In regards to being "normal", I had a patient that had a trach for about 3+ years, I got her home from the hospital after her procedure and the stay. She was on a vent only at night, had very minimal suctioning, and got around on a power chair (she was a paraplegic - motor vehicle accident). For the first year or so, I didn't think much of it, we'd talk quite a bit about things whenever I came to visit for follow ups, til one day she told me she does not go out very much because of her trach - not because of to the care required, but because of how it was not "normal."

I told her flat out, screw everyone who stares or makes fun of it, it's their problem and not her's. We talked for about an hour on subject, how she should approach people on it when necessary, and especially with kids because they can be so curious about it. By the time I did my next follow up a few months later, she told me about how she was going out much more, that it wasn't so bad when people do look and/or ask questions. In the end, she pretty much did not care how people reacted with it and because she was going out more, made my follow ups and our talks more fun.

I'm glad to hear she's going out more. My trach (have I been spelling it wrong?) never stopped me. I Just missed things like wearing a necklace or scratching my neck. I don't know why I had it for so long. It's been red plugged for 2 years. That's doctors for you.

not to sound gross but.. have you been with any men since your injury? whats dating like having to deal with those sort of challenges?

No I have not... My injury is an obstacle. I am on a dating site. It allows me to put all my cards on the table and if they want to talk to me, cool, if not that's ok. I get a lot of hits but no chemistry.

from experience online dating is just full of pervs and people that just want one night stands. Face to faces with people would work better. Your positive attitude towards your disability makes you a strong person, it's an attractive trait.

It's just intimidating, for both of us. I agree with you though.

What's life without obstacles? I wish the best for you and good luck.

Very true. Thank you.

First, you probably get this a lot, but your love of life despite the awful things you've been through is inspiring.

I have lupus and other assorted health issues - I had to go through chemotherapy and am on a slew of meds and deal with chronic pain every day. I know how hard it is to live with a disability, it can feel crushing sometimes. I empathize with your situation and your beautiful personality is all the more amazing.

Thank you for being you.

I replied to this particular comment because I wanted to share that I have found a life partner through a dating site (OKCupid). I wanted someone with the same qualities you've outlined here and in your other AMA. He has neurofibromatosis, an awful illness where tumors grow on nerves throughout his body. Being with someone else who has been through similar issues as me has been a blessing. A lot of people out there can't deal with a partner who needs care like we may, or can't really comprehend our experiences and pain... My partner is amazing. His outlook on life is an inspiration just like yours. And we both have health issues, luckily we are able to take care of each other when we need to.

I know others have said you'll find someone, but as a person who has suffered and is suffering and didn't want to be a burden on anyone, I want you to know that you WILL definitely find a person who doesn't see you as a burden at all and who treasures your beauty no matter what you're going through. You're a fucking amazing woman, and you're going to make someone very happy one day.

I hope my comments haven't been offensive or intrusive, I just wanted to give you hope from someone who's been there and gets it.

I wish you all the blessings in the world and I will keep you in my prayers.

You made me smile. Thank you for this. I'm just waiting for someone to come along. I'm glad you found happiness. I wish both you and your partner the best of health.

You seem like you're a smart girl and have a great personality. There are plenty of folks out there who aren't so shallow, I have no doubt you'll find somebody soon enough.

(Also, it doesn't hurt that you're easy on the eyes...just sayin'.)

Thank you! I guess time will tell.

if you ever find the right guy, are you still able/do you want to have children? or does the nature of your injury mess up that part of your biology?

I can have children. My organs still work. I hope to have my own one day.

Is there anything about being a quadriplegic that people wouldn't guess, like any strange phenomena that you experience that someone not in your position wouldn't know/think about?

Probably same answer I just gave someone else. We don't sweat. Our homeostasis is altered We spasm We feel wired sensations below injury.

Have you experienced autonomic dysreflexia? If so was it terrifying or confusing?

Yes. TERRIFYING! It felt like someone took a hammer to my head. It hurt so bad. I honestly thought, "This is it, I'm going to die". Out of all that I've been through, that was the most painful thing I've experience.

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Designing. I'm an interior design student. I'm a foodie too. Watching documentaries Reddit

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I was seen twice I believe. It was really disappointing. I needed someone to talk to but I guess they didn't see it that way.

That's such a shame. Rehab is so physically focused that the emotions don't really get a lot of attention often. I hope you get the chance to see somebody in the community if you feel you need it. SCI is a huge thing for anybody to go through and friends and family are often dealing with their own grief and loss for you so it is hard to talk things over with them.

I did notice you mentioned having some anxiety and concentration difficulties - both of which are totally normal and understandable. If you haven't already, I recommend looking into mindfulness meditation practice. It is a bit weird at first but can really help with pain management and emotional regulation.

I hope I'm not coming across as too preachy, it is just a real shame you didn't get that support early on. It sounds like you're doing great though, and I wish you all the best in life :)

Thank you. I'll try it. What do you recommend for insomnia?

That's a tough one as there are so many causes of crummy sleep and I am betting you have a lot of factors not working in your favour at the moment like pain and repositioning problems.

One type of mindfulness meditation is mindfulness of the breath where you focus your attention on your breathing whenever you notice it has drifted off. If the breath focus conflicts or exacerbates any physical issues for you, you could try "leaves on a stream" where you imagine yourself sitting by a gentle stream and placing each new thought on a leaf as it comes to mind then watch it drift down the stream.

There are some good recordings online for free if you google them and over time you can probably do without the recordings. It sounds deceptively simple, but it is actually pretty challenging. Like anything, with practice it gets easier and I promise there is a good evidence basis for it in research studies. :)

Thank you so much. I hate sleeping pills. I'm going to try this tonight.

Silly question - have you asked your doctors if there might be a physiological cause for your insomnia? I'm no expert here but it wouldn't surprise me if some sort of damage to or even swelling around a nerve could contribute.

I haven't. I need to talk to a psychologist that I can't get insured for. I believe it's trauma. When I was in the hospital, nurses would check on me three times a night. I use to spend hours drowning in phlegm. I needed auctioning every fifteen min. It did something to me. Now, idk, if the TV isn't on I feel anxious. It's pretty awful.

That's pretty miserable, and it would be completely understandable. I also suffer from pretty bad insomnia sometimes (compounded by the fact that I'm an incredibly light sleeper). I also can't imagine what it would be like to be up all night and unable to get up and do something else unaided if I feel like I'm just not going to fall asleep. How do you manage in a circumstance like that?

On the subject of the psychologist, does your school offer emotional counseling? I realize anybody they have is probably not very well equipped to deal with somebody in your situation, but it'd be a hell of a lot better than nothing if insurance is biting you in the ass on this one.

It's so frustrating. I self medicate with weed. It helps a lot. I know school psychologist can not help with what I need. I wish It did but I think it's beyond them. Ill try it though. I have nothing to lose.

I can believe that helps, and I don't blame you. (And it's fortunate that you can get your hands on the stuff, I suppose!)

And yes, that was my thought as well...it can't hurt. I suppose more than anything your support network is the major thing. It sounds like your family has been great...I didn't see that you said anything about friends, though. How's your social life?

My friends consists of my family. I have tons of cousins my age. I have very few loyal friends.

Hey, fellow quadriplegic here. I've been injured for about 4^1/2 years now. What kind of rehab or physiotherapy do you do to keep yourself stretched out and comfortable? I think I read that you're from Burbank California? They have got some great rehab places for quadriplegics in Southern California. Were you sexually active before your injury, I saw up top you said that your "injury blocks your urges," my injury does too and I've tried getting into the dating thing but it never seems to go anywhere and because feeling is rather limited down there it seems kind of forced, you know what I'm talking about? Do you ever use a manual wheelchair, or always the power? Can you transfer using a sliding board on a level surface? Have you thought about driving? I could go on for days, so I'll end it here, you're very pretty girl and one day will walk out of this thing.

Hi! Sorry to hear about your injury. I'm not sexually active so I can see how it it would be forced. I hope I don't forget much. I use a sliding bored I need help doing so I want to drive more than anything and I hope I get to. I use an electric chair and I'm working on manual. Yes SoCal has a lot of support for SCI

You are amazing. When I win the lottery you're going to have anything you want that I can give you.
Makes me even MORE upset about people who complain about everything and have no idea how fortunate they are.

Well thanks! I'm playing too. Probably wont win ,but hey, worth a try. I think I'm due for some good karma. Honestly I used to be kind of a complainer. Once this Happened I thought, "ouch this is real pain".

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Any new research is exciting. UCLA has taken me on. I've explain a bit about it in my other AMA. It has to do with electrical stimulation of the spine.

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It's a great way of seeing it. I'll keep it in mind. Thank you!

I'm glad that you are doing well, and were able to get your trache out. You said in another answer that you were in school. I was wondering what you are studying, and if you are able to continue with whatever career you wanted before your accident or if you had to change your career goals?

I was originally I was studying architecture. Now that I'm injured, I am studying interior design. It eliminates model making without venturing off from my original career choice.

Do questions like these get old repetitive and annoying?

Repetitive? Yes I just see it as rehab.

Just read both your AMA's and thought I would jump in and give you a below the shoulder height hi five for general awesomeness.

My brother in law has cerebral palsy and generally behaves like a 37 year old fat baby. His life could be so awesome if he was able to see his life in a similar way to you. So yeah Hi'ish five for adding to the human experience.

Also side question have you thought about specialising in interior design for people who require living aids? I am sure having to alter your personal space forever just to survive could do with some leopard print and a feature wall..

Oh yes! I think it's my calling. I want to make beautiful homes for people with disabilities. I hate how homes for the disabled look like hospitals. As for your brother, a little motivation goes a long way. How bout online classes? That's how I started again.

My daughter has a trach but is too young to talk. What is it like breathing through a trach?

I need to fix my spelling. Breathing Is not altered at all. Speaking is a little harder. It's kind of like the wheelchair kid from Malcolm in the middle just not as intense.

Awesome I assumed it felt different. Thank you for your help.

No problem

What sort of things on a daily basis have changed for you? As in sleeping patterns, relationships with old friends, things like that. In fact what is the average 24 hour day in the life of Analy? :-)

Do you find people to be condescending at all towards you? I'd imagine there's idiots who would probably mean well but actually make you feel worse.

Finally (sorry to monopolise your time a bit!) but I saw that it was swelling that is the root cause of the quadriplegia so over time will the swelling and bruising not subside or is there likely to be further damage than the bruising?

All the best in your recovery, I think you're handling the situation fantastically!

Hello, well for starters I'm no longer independent. I need someone to dress me, help with hygiene, serve food for me, and take me places. I stay busy with school work. I lost many friends because we just went different ways, I guess. I have insomnia. I use pills or weed to sleep. My aunts and uncles tend to be condescending. Yes they mean well but they treat me like a five year old. They pretend to know more about my health than I do. Swelling causes the bruising, and the bruising causes scar tissue. The scar tissue blocks the pathways from the brain to the spinal cord. The swelling goes down relatively quickly, maybe 6 months or so. Steroids stop the swelling but does not subdue it. Thank you. I try.

Wow, you smoke pot? When I get stoned, I spiral into a deep pit of reflection and self loathing. If I were in a situation such as yours, pot would most likely make it much worse for me, as I would obsess over the negative aspects of my condition. But, weed isn't for everyone.

When you are high, does weed help you reconnect with the area below the injury in a way that is not possible when sober? When you make mental status inquiries to areas below the injury, such as "what is the texture of the pants I am wearing" can you perceive traffic moving up an down the cord using auxiliary routes, even if it the traffic is largely muted?

Weed just makes the pain to away so I can sleep. It's wonderful. I just get really paranoid. When I'm sober, the only way I can describe it is static. I feel static through my body. Once I'm high I can get rid of the static and concentrate on what's real and what's phantom.

Thanks for the reply!

No problem My pleasure.

Thanks for the answers, really insightful! I saw in another answer how you'd be open to doing public speaking on what's happened, think you'll go through with it at some point? I hope you do, I think you'd definitely open a lot of people's eyes.

Yes of course. I'm obviously an open book. If anyone asked me to i would do it.

Does your caretaker pack bowls for you? How do you light it? I'd guess vaping is safer but it never does the job for me.

I actually just eat edibles. A piece of kiva chocolate knocks me out.

After reading more of your IAmA I could imagine the coughing and phlegm would be annoying/hazardous. Since you're a foodie, let me recommend ham, lentil, split-pea and spinach soup. I replace the spinach for cannabis leaves, it doesn't overpower the soup, mimics the texture, and gives a delicious sneaking aftertaste of edible.

Equal parts beans, 2-3lbs pork shoulder chunks + bone, water per dried bean bag instructions, hand full or more of trim, cook per bean bag timing, I use too much bean for a hardy soup.

thank you for the recommendation Im going to try it. .

Congratulations on getting your trache out ! : ) I'm a nurse and I hate suctioning out traches, because it's always uncomfortable for the patient : (

Oh it's the worst! It feels like you being gagged and the your suffocating. Sometimes I didn't know what was worse, suction or chocking on phlegm.

I know I'm late to this, but I'm curious: what kind of movies/music/books do you watch/listen to/read? Have your tastes or interests changed because of your experiences or medical situation at all?

Movies: Horror and Documentaries Music: anything with lyrics except heavy metal Read: it's kinda sad; I used to be a reader but now, I can't stand silence. I get so much anxiety because of my trauma from hospitals.

:( Sad about reading. Have you tried reading with music on, or just reading in a new genre that you've never tried before or anything like that? I feel like Bon Iver or Sigur Ros have music that would be great to read to. Anyway, thanks for answering! I hope you continue to recover and find awesome things to do!

I have and I can't concentrate. I'll give it a try. Thank you very much!

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I've tried. I have a short attention span.

You're very pretty. Am I missing something, what was the accident. Do you believe you will ever walk again with how technology is or at least regain some full control of certain muscles.

I was in a car accident when I was 20. The link is on my other AMA It was a DUI accident. I'm sure there will be something that'll come up. I believe it's in the gov't best interest. Better finding a cure than high med bills and SSI.

Someone did this on reddit. I think it was a neat idea. https://soundcloud.com/birdfeeder/jurassic-park-theme-1000-slower listen to it if you happen to get the chance.

Will do!

I think this will cure my insomnia

Had to comment to say you're beautiful. Hope life gives you all that you want.

Thank you.

I just finished reading both of your AMA's, and I just want you to know, you're awesome. Hang in there, you'll find love when the time is right. Take care, and keep a positive outlook and effort. <hug> :) P.S. Cute dog! Reminds me of my Bichon.

Thank you! He just looks cute btw!

Out of curiosity do you know your ASIA level?

Is that the ABC level system?

Here's the form Warning- PDF! But it's pretty much A, B, C, D, E and then the lowest spinal cord level that is intact for sensory and motor on both sides. I assume this is C4 from your previous AMA?

I think I've been told B I can't remember.

I HAD TRACH!!! The scar is badass and it is a great conversation starter haha. Glad your are all good!

I'm hoping mine heals nicely. If not,then I was a kidnappers victim and it was a result of a knife to my throat lol

Haha, great story! Roll with it too. I tell people I wondered off the resort in Cancun and got stabbed by the Cartel. People actually believe it until I tell them I am just busting their balls. Usually results in look of shock, horror, relief and possibly disgust haha.

Roll with it... Get it? Maybe disgust lol Probably relief.

Stemcell treatment, would it help anything? Is it possible it could make a difference? Sorry i don't know enough about these things.

It's being done in other countries but I don't trust them. It's being studied in the states but because we are so litigious it is taking a long time.

I just wanted to take a second and thank you. My close uncle suffers from Multiple Sclerosis and is also paralyzed from the neck down and I often act as a caretaker for him. Last week I learned his diaphragm is failing and that he needs a Tracheotomy. So you two are unfortunately in similar, but not exact, situations. I've been pretty scared about everything but this AMA really relaxed me, thank you!

Oh boy, I'm sorry to hear that. It's a fast procedure. It's not hard to live with one. Hopefully they will give him a special valve that allows him to inhale through the trach but still speak. Best wishes.

Hey, fellow spinal cord injury sufferer (victim?) here! It sounds like we were both injured around the same time so I'm sure you're 'settling' in as it were, but here are some resources that sort of helped:

http://sci.rutgers.edu/vb5/

http://www.apparelyzed.com/forums/

and if you get a little time, I work with this guy and we're trying to encourage the 'big players' in the industry to work on "curing" spinal cord injuries. I hope if you get a little time you get in contact with Dennis and get involved with what we do.

Thank you! I'll check it out.

I couldn't come up with a question so I'll just say hello. Hi. :D

Hello!

Have you read The Bone Collector? If so, how realistic is it in terms of your experience in dealing with becoming a quadriplegic?

If you haven't, it's about a quadriplegic homicide detective. They also made it into a movie.

No I haven't but I'll look into it. It'll be cool to see someone's perspective other than my own

A friend of mine was paralyzed on a trampoline. She has to use a vent. What did it feel like not being able to breathe? That is so frightening.

http://i42.tinypic.com/205cghl.jpg

It's the worst feeling. I woke up with the vent in my mouth pushing and pulling air from my lungs. Once my lungs came back, I would fight the machine for more breath but I bucked with no results. It's hard being on a vent. I had no way of talking to the doctors while I was on it. My heart goes out to your friend. I'm blessed in many ways. I'm lucky my injury was not worse.

Since, if I understand correctly, you can't use your hands, how are you typing your replies? Narration (text to speech), one of those eye or cheek thingies like Stephen Hawking, or do you type with some other body part?

I can use my hands just not my fingers. I weave a stylus in between my fingers and use a tablet.

So I am a pretty friendly person. I love talking to everyone and I smile and nod at most people I see walking by. However, when it comes to people with any sort of physical disabilities I get awkward, because I still want to be friendly, but I don't want you to think I am being friendly because I pity you or anything like that. Any suggestions on how to act? I've gotten some nasty looks before if you were wondering where this question was coming from. Also is it awful of me for looking at the disability?

No it's not! Everyone has the right to be angry or annoyed but it could just be due to their situation, not you. Just don't stare. That bugs me. Smile say, hello and if it seems like they need help,,offer your assistance. I like when people acknowledge me. I'm hard to miss, so why pretend you didn't see me?

Man stare because you are beautiful, woman stare because they are envious.

Eh being bionic also is a factor.

Well, when somebody stares too long, you can give them that look and say "Resistance is futile. You will be assimilated".

It's been a real pleasure talking with you, one of the best amAs I've seen in a long while, you are taking what happened to you with a lot of energy, you have a lovely character, and don't mind laughing at yourself, which is truly healthy. I'm sure you'll overcome all of this. We're all looking forward to an AMA titled "IamA fully recovered ex-quadriplegic female architect". It might take a while, but it'll come, don't worry, we are not going anywhere.

Totally off-topic, but I say this to everyone lately, as I'm absolutely obsessed with it: If you haven't already, go watch Breaking Bad. Now. Stop whatever it is you are doing and watch BrBa. It'll simply change your life.

Too late, I saw it. Thank you very much!

in school I ones got to visit a quadriplrgic women, and I really didn't know what to do, how to look, ... what is the best way to approach this?

"Hi my name is... Nice to meet you. How are you?" I'll always initiate convo. It's just easier that way but if they don't just introduce your self, just like any other person.

ok, kinda obvious if you say it now :p thanks

Np!

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Did you expect a robot? Lol I'm a little bionic I guess.

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Wouldn't dare.

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Thank you.

Hello again, I thought of a question. Which is your favorite sub-reddit?

I stick to the popular ones. WTF and gore are two that I enjoy. Any recommendations?

/r/picrequests and /r/historyporn
.
The last is about historical pictures, not historical pornstars just so ya know. The title can be a bit misleading. :)

Damn I'll check them out. Thank you.

Did something like this a while ago.

My IAMA

I know exactly what you're going through. And trache are ridiculously uncomfortable. I only had one for 3 months or so, but can't imagine 2.5 years. But I just read through this whole post and I can relate to everything. Glad you're staying positive!

Very cool to see a guys perspective.

Do you think this is funny?

I'll save it and watch it but very little offends me.

How do you wipe?

I have a care taker.

No question in particular, I just wanted to say you're not just female. You're a woman. There's a certain dignity to being human, and with it the right to be a man or woman, not just male or female. I'm not trying to be pedantic, I just figure that being quadraplegic might feel a little dehumanizing at times. In those times I hope you remember you are most definitely a human, with all the beauty that humanity entails. Best of wishes to you.

Thank you. I have a high self esteem so I've never thought myself any different than the person next to me. It's just a title. Thank you for your concerns.

Do you want to have sex with meb or women?

No I'm good. It does nothing for me. I'll fall asleep. Chocolate is ten times more arousing.

Thanks for answering my question. I asked because my best friend is a sexcam worker. She kibd of just fell into it cause well economy isn't so great and she has a pretty face and nice boobs. But she says that many of her clients are people who still do have urges. Its healthy to. In fact she's met men who are provided a stipened to use in order to get service from sex workers in general. She said one of her clients can express climax completely by mind arousal. He calls it a mind orgasm. But yeah so that's that tmi for you

I could ask her to give you a couple of shows at no charge. Just fire up the old skypie and shell work her magic. Shes not graphic. Kind of meditative although I've never subscribed to her services but she says she tries to make It relaxing and tantric.

I'll think about it. Yea I've heard people can have "mindgasms" I can't lol

Is there anything else I can do to help? Hablo espanol.

No gracias. Thank you for trying to help. I'll honestly think about it. I'll save your user name. Thank you. ... Maybe if I have a friend with a disability could I send them your way?

Sure, just have to ask my mom. My rents are in social services and my mom helps people with intellectual disability and stuff like that. Shes pretty rad. The kind that smuggles cheap generic medication from canada to people without chargin them extra for it.

I like her style.

do you get, or do you think you'd get, any kind of satisfaction or contentment out of cuddling or kissing if the emotional connection was there?

I think so. I broke up with my ex early on into my injury. When we were together the affection was satisfying.

Are you open to trying supplements as part of your recovery?

-Lion's Mane, a fungus said to stimulate Nerve Growth Factor

-Turmeric, a cure all and anti-everything. It's a natural herb. Don't use the extract version. Find the whole herb.

-Cat's Claw, get the extract version. It's a rainforest plant that has wide range of healing abilities.

There are hundreds of supplements out there and I suggest researching. But these three alone are pretty powerful and a great starting point.

If you're taking any other medication you will have to talk to a doctor about these.

No I'm not. I know that I should though. I'm going to look into these... Thank you!

Don't. If it was real medicine or helpful your doctors would be using it.

Ill research and ask.