Current Events > ITT: TheDogfather rambles.

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TheDogfather
12/14/18 4:59:03 PM
#1:


As I was falling asleep for my nap, I was thinking back on the conversation I briefly had with @_Lyonidias about my medical history.

I was born with a rare form of Muscular Dystrophy called "Myotubular Myopathy." This disorder, MTM1, severely weakens the voluntary muscles and nothing else. I eat via a tube. I use a wheelchair to move. I type to communicate. I breathe via a machine. I'm 29 and a Communication Major. I spend my days writing video game walkthroughs.

There is a gene therapy being tested on human children with MTM1. The drug fixes the protein imbalance and restores muscle function. It'll be years before I get it.

When I was born, none knew what was wrong with me. Eventually, geneticist Dr. Herman diagnosed me. She said I would be dead soon. My parents found seventeen other families with MTM1 babies. They sent their information to every children's hospital that had a genetics department. Dr. Herman also received a copy. Dumbfounded, Dr. Herman sent a grant request to the Muscular Dystrophy Association. She got the grant, then, after much research, identified the offending genetic marker in Mom's family. That started everything into motion towards the gene therapy.

Most MTM1 patients are either dead or kept out of school.
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_Lyonidias
12/14/18 5:01:54 PM
#2:


Youre on a ventilator at home? Do you have a trach?
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TheDogfather
12/14/18 5:02:31 PM
#3:


_Lyonidias posted...
Youre on a ventilator at home? Do you have a trach?

And a g-button.
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_Lyonidias
12/14/18 5:06:20 PM
#4:


TheDogfather posted...
_Lyonidias posted...
Youre on a ventilator at home? Do you have a trach?

And a g-button.


I think the buttons are more common with children. Had to google that one. Working in the ICU I do see PEGs (more commonly, OG/NG tubes) and intubated, ventilated patients quite often. Ive actually seen a recent influx of patients who are on trach collars or trach + ventilator.

Do you catch respiratory illnesses often?
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TheDogfather
12/14/18 5:06:52 PM
#5:


I'm tempted to show what I look like...
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TheDogfather
12/14/18 5:09:49 PM
#6:


_Lyonidias posted...
Do you catch respiratory illnesses often?

I used to. I was a frail baby.

For high school, I decided to stay on the vent 24/7 for extra energy.
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TheDogfather
12/14/18 5:14:50 PM
#7:


https://imgur.com/a/EeqtGx5

This was last week.
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TheDogfather
12/14/18 5:24:38 PM
#8:


*hangs "Ask me anything" sign in window*
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TheDogfather
12/14/18 5:34:05 PM
#9:


Anyone want to hear about my latest collapsed lung?
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_Lyonidias
12/14/18 5:34:52 PM
#10:


TheDogfather posted...
_Lyonidias posted...
Do you catch respiratory illnesses often?

I used to. I was a frail baby.

For high school, I decided to stay on the vent 24/7 for extra energy.


Im glad thats improved. Make sure people around you (especially caregivers) wash their damn hands because its like respiratory illness season tbh

Are you growing out a beard or do you usually keep your facial hair shorter?
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TheDogfather
12/14/18 5:38:11 PM
#11:


_Lyonidias posted...
Im glad thats improved. Make sure people around you (especially caregivers) wash their damn hands because its like respiratory illness season tbh

Are you growing out a beard or do you usually keep your facial hair shorter?

1. Everyone entering the house is told to wash their hands. I'm very well-cared for.

2. I lack a social life, so I only trim when hair gets caught in my vent.
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Vyrulisse
12/14/18 5:39:03 PM
#12:


What is your range of motion? Can you play games and if so what types of games do you prefer?
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TheDogfather
12/14/18 5:42:43 PM
#13:


Vyrulisse posted...
What is your range of motion? Can you play games and if so what types of games do you prefer?

I can't even lift my GOOD arm.

My dad puts levers and handles on my controllers. I tend to shy away from games that require fast action.
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Vyrulisse
12/14/18 5:43:40 PM
#14:


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TheDogfather
12/14/18 5:46:06 PM
#15:


Vyrulisse posted...
That's cool and creative though.

I got my problem-solving skills from him. I got my stubbornness from Mom.
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TheDogfather
12/14/18 5:55:56 PM
#16:


More.
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_Lyonidias
12/14/18 5:59:24 PM
#17:


TheDogfather posted...
Vyrulisse posted...
What is your range of motion? Can you play games and if so what types of games do you prefer?

I can't even lift my GOOD arm.

My dad puts levers and handles on my controllers. I tend to shy away from games that require fast action.


Thats really neat though! I was wondering the same thing but wasnt sure if it would make you uncomfortable if I asked.
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Vyrulisse
12/14/18 6:00:39 PM
#18:


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TheDogfather
12/14/18 6:00:58 PM
#19:


_Lyonidias posted...
Thats really neat though! I was wondering the same thing but wasnt sure if it would make you uncomfortable if I asked.

Naw.

I'm down. I don't easily offend.
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TheDogfather
12/14/18 6:01:41 PM
#20:


Vyrulisse posted...
What kinda music do you like?

N/A

I'm not into music.
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TheDogfather
12/14/18 6:12:05 PM
#21:


So...

I started Pokemon Ultra Moon. I'm about to pick Litten.

Should I PikaSav and cheat, or be legit?
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_Lyonidias
12/14/18 6:12:55 PM
#22:


Legit ftw
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TheDogfather
12/14/18 6:13:36 PM
#23:


_Lyonidias posted...
Legit ftw

Aye-aye, Cap'n.
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TheDogfather
12/14/18 6:22:09 PM
#24:


I'm tired from little coffee. I keep yawning.

*waves hand*

How are y'all?
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TheDogfather
12/14/18 7:11:18 PM
#25:


bump
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treewojima
12/14/18 7:26:43 PM
#26:


What does your average day look like?
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TheDogfather
12/14/18 7:27:28 PM
#27:


treewojima posted...
What does your average day look like?

A gray blob.
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treewojima
12/14/18 7:37:45 PM
#28:


TheDogfather posted...
treewojima posted...
What does your average day look like?

A gray blob.


boo-urns
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TheDogfather
12/14/18 7:45:09 PM
#29:


treewojima posted...
boo-urns

I get up at 5-6 AM.

I nap at 1 PM.

I get up at 2:45 PM.

I go to bed at 8 PM.
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TheDogfather
12/14/18 8:35:12 PM
#30:


bump
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TheDogfather
12/15/18 7:17:02 AM
#31:


I woke up feeling somewhat...empty.
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TheDogfather
12/15/18 7:37:04 AM
#32:


I'm reflecting on my last collapsed lung and why I endured it. The left lung collapsed while I was in bed. Right before passing out I said, "Help me. I'm scared." I was still "awake" when I was being wheeled to the ambulance. In the split-second before I passed out, I feared for my parents losing me. I endure everything for others.
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TheDogfather
12/15/18 7:47:53 AM
#33:


@_Lyonidias
@DarkRoast
@NeonOctopus

You are the only CE nurses/doctors I know. How can I remember the trip to the ambulance when I passed out in my bed? I remember the sounds.
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TheDogfather
12/15/18 8:17:59 AM
#34:


sigh
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_Lyonidias
12/15/18 8:19:24 AM
#35:


TheDogfather posted...
I'm reflecting on my last collapsed lung and why I endured it. The left lung collapsed while I was in bed. Right before passing out I said, "Help me. I'm scared." I was still "awake" when I was being wheeled to the ambulance. In the split-second before I passed out, I feared for my parents losing me. I endure everything for others.


Thats really weird that you remember sounds but some people say that sounds are the last sense to go. Iunno if its true
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TheDogfather
12/15/18 8:24:40 AM
#36:


The hospital stay was horrible. I...

I'm not having a good morning.
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TheDogfather
12/15/18 8:35:27 AM
#37:


I'm about to take an extra antidepressant. I'm tired of being too limited to be happy.
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TheDogfather
12/15/18 12:34:40 PM
#38:


I napped. I'm still...glum.
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TheDogfather
12/15/18 12:58:37 PM
#39:


eh
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_Lyonidias
12/15/18 3:46:24 PM
#40:


you ok dude?
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she's a killer queen~
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TheDogfather
12/15/18 4:07:15 PM
#41:


@_Lyonidias posted...
you ok dude?

I'm better.

I distracted myself by over-thinking Pokemon stuff.

I don't think anyone truly "understands" what I want. Bluntly, being someone's boyfriend gave me hope in a future worth living for. I dreamed of having a family and maybe even a job. After the relationship ended, I... That, plus losing two cousins, broke me. The gene therapy isn't in-focus enough for me to put any chips on it. I'm probably to the point where not even guide-writing interests me.

Even if I find another girlfriend, all I can do is type. My genes carry MTM1...
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TheDogfather
12/15/18 5:44:34 PM
#42:


I can't get a job. I can't volunteer. I can only type. The gene therapy has only been tested on kids. None know how it'll affect older patients.

I'm stuck...existing for others.
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TheDogfather
12/15/18 6:55:43 PM
#43:


ugh...

imma email my psychologist
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TheDogfather
12/15/18 8:31:13 PM
#44:


Here's my email.

Simply, I blurted out roughly eight months of pain in a single Skype
message to Dad. In March of 2018, I became the online boyfriend of a girl in [REDACTED]. This was, in hindsight, unwise for many reasons. Her name was Cierra.

Here's what I typed to Dad.

"even though the relationship was a mess, being a good boyfriend felt
good. i felt like i had a decent future. the relationship ended. i
tried for a while to replicate that feeling. i eventually gave up
since i can only type. i hid this out of embarrasment. i fear
judgement for trying to "act normal." im too empty to care about
judgement anymore. "

I was happy being Cierra's support and foundation. She broke up with
me between the deaths of two cousins. I tried my hardest to find a new
girlfriend to replicate the happiness. Even if I find a new one, I can
only type.

With Cierra, I felt like I had a decent future ahead of me. I figure
some part of me "broke" when she abruptly ended the relationship. I
have no clue if/how the part can be repaired.

I hid this for eight months in fear of being judged for trying to have
an iota of normalcy in my life.

Any suggestions?

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MrK3V
12/15/18 8:36:46 PM
#45:


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TheDogfather
12/15/18 8:37:21 PM
#46:


MrK3V posted...
Hey friend.

Sup?
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MrK3V
12/15/18 8:39:04 PM
#47:


Just chillin. Finished an exam today. About to play some smash with a buddy.
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TheDogfather
12/15/18 8:39:32 PM
#48:


MrK3V posted...
Just chillin. Finished an exam today. About to play some smash with a buddy.

Is it fun?
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MrK3V
12/15/18 8:40:22 PM
#49:


Yeah its fun. There's actually a story mode, so I'll most likely play it more than smash 4.
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TheDogfather
12/15/18 8:41:09 PM
#50:


MrK3V posted...
story mode

Is it sauce?
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