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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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_Lyonidias 12/14/18 5:01:54 PM #2: |
Youre on a ventilator at home? Do you have a trach?
--- she's a killer queen~ Lyonidiias.sarahah.com ... Copied to Clipboard!
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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? 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? --- she's a killer queen~ Lyonidiias.sarahah.com ... Copied to Clipboard!
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TheDogfather 12/14/18 5:06:52 PM #5: |
I'm tempted to show what I look like...
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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TheDogfather 12/14/18 5:14:50 PM #7: |
https://imgur.com/a/EeqtGx5
This was last week. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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TheDogfather 12/14/18 5:24:38 PM #8: |
*hangs "Ask me anything" sign in window*
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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TheDogfather 12/14/18 5:34:05 PM #9: |
Anyone want to hear about my latest collapsed lung?
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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_Lyonidias 12/14/18 5:34:52 PM #10: |
TheDogfather posted...
_Lyonidias posted...Do you catch respiratory illnesses often? 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? --- she's a killer queen~ Lyonidiias.sarahah.com ... Copied to Clipboard!
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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 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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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Vyrulisse 12/14/18 5:43:40 PM #14: |
That's cool and creative though.
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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TheDogfather 12/14/18 5:55:56 PM #16: |
More.
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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? Thats really neat though! I was wondering the same thing but wasnt sure if it would make you uncomfortable if I asked. --- she's a killer queen~ Lyonidiias.sarahah.com ... Copied to Clipboard!
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Vyrulisse 12/14/18 6:00:39 PM #18: |
What kinda music do you like?
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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_Lyonidias 12/14/18 6:12:55 PM #22: |
Legit ftw
--- she's a killer queen~ Lyonidiias.sarahah.com ... Copied to Clipboard!
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TheDogfather 12/14/18 6:13:36 PM #23: |
_Lyonidias posted...
Legit ftw Aye-aye, Cap'n. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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? --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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TheDogfather 12/14/18 7:11:18 PM #25: |
bump
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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treewojima 12/14/18 7:37:45 PM #28: |
TheDogfather posted...
treewojima posted...What does your average day look like? boo-urns ... Copied to Clipboard!
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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TheDogfather 12/14/18 8:35:12 PM #30: |
bump
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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TheDogfather 12/15/18 7:17:02 AM #31: |
I woke up feeling somewhat...empty.
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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.
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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TheDogfather 12/15/18 8:17:59 AM #34: |
sigh
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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 --- she's a killer queen~ Lyonidiias.sarahah.com ... Copied to Clipboard!
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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.
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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TheDogfather 12/15/18 12:34:40 PM #38: |
I napped. I'm still...glum.
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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TheDogfather 12/15/18 12:58:37 PM #39: |
eh
--- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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_Lyonidias 12/15/18 3:46:24 PM #40: |
you ok dude?
--- she's a killer queen~ Lyonidiias.sarahah.com ... Copied to Clipboard!
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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... --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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. --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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TheDogfather 12/15/18 6:55:43 PM #43: |
ugh...
imma email my psychologist --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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 --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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MrK3V 12/15/18 8:36:46 PM #45: |
... Copied to Clipboard!
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TheDogfather 12/15/18 8:37:21 PM #46: |
MrK3V posted...
Hey friend. Sup? --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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? --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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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? --- I'd rather look at virtual horse balls than a post from UR. - __aCEr__ ... Copied to Clipboard!
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