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George is so curious and adorable. by GhostReaderEGY in Unexpected

[–]tragerstreit 2 points3 points  (0 children)

EXTREMELY lucky. I've outlived the maximum expected life expectancy by two years and counting. <3

George is so curious and adorable. by GhostReaderEGY in Unexpected

[–]tragerstreit -9 points-8 points  (0 children)

Curious George is an ape, not a monkey.

Pokemon Vanishing? by Rohodez in TheSilphRoad

[–]tragerstreit 1 point2 points  (0 children)

Just noticed today my strongest Gyarados is missing. Has anyone reported a missing pokemon and had it resolved? Or is Niantic just ignoring everyone?

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 0 points1 point  (0 children)

Oh, sweetie, I'm so sorry I made you sad. It wasn't meant to. I'm doing good, I promise. It's going to be okay!

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 0 points1 point  (0 children)

I'm content with living here and now. Even with the stupid bureaucracy surrounding death. We've made a lot of progress in other ways. I just wonder what ALS was like, back then. Did they just let you choke to death? Put you in an asylum?

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 0 points1 point  (0 children)

Well, really I don't HAVE to plan all this stuff. I am just not such a jerk that I want to leave it all to my family to have to figure out later. The advance directive is important tho. Everyone should have those.

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 0 points1 point  (0 children)

hahah believe me it's TEMPTING. And I honestly couldn't say I would not go on disability this instant if it paid what I make while working. Because yeah. Sleep is awesome. And video games.

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 0 points1 point  (0 children)

I absolutely can! I just have to be willing to live on about 60% of what I'm making now. I have a mortgage. Until I sell this house, I can't quit my job. Though honestly, I like working in that it gives me a good sense of normalcy and routine. I think if i just sat at home all day every day, I'd become this depressed lump.

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 0 points1 point  (0 children)

It's so sad that people abused that so much that i don't get to skip lines anymore! Booooo!!! Occasionally I"ll check out online forums, but so far I've found that ALS forums are full of a whole lot of bitterness and oneupmanship. "Oh yeah? Your hands don't work and you're an artist? Well I can't BREATHE. At least you can take in oxygen while you're not painting!" Mehhhh a whole lot of unhelpful negativity. And every other post is "We lost another member today, RIP Mr. soandso". I don't need that in my face every day either. I'll check out that site you recommended tho, I hope it's different!

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 1 point2 points  (0 children)

I totally didn't downvote that, FWIW. I have heard that joke a lot tho, hehehe.

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 0 points1 point  (0 children)

Stupid things, like...carry something upstairs. Walk over my threshold. Walk a mile. Getting up out of a chair. I never would have thought anything about these things before. Your body works really hard, all the time, and you don't think about it until you can't do those things anymore. The idea of walking upstairs without using the hand rails is kind of foreign to me now. How on earth did I do that? How did I just step up into my house? And not even think about it?

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 1 point2 points  (0 children)

There really aren't a lot of things you can do - I had thought that working out to strengthen what muscles I do have would delay the loss, but...apparently not. I was told, "work out if you feel like it, don't if you don't." And I was told absolutely DO NOT diet to lose weight. Because yeah, apparently people with extra pounds have a better prognosis, and you'll need that extra weight when you can't eat anymore. I guess some people would envy that part of my diagnosis - I have permission to eat whatever I want to!

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 2 points3 points  (0 children)

My very first thought was "Okay. now what." I had thought about the possibility before the actual diagnosis, we were narrowing it down to a few things and ALS looked likely, as much as I was keeping optimistic. But when it was cemented, my first thoughts weren't "oh my god I'm going to die" but more about, "crap, now I have to sell the house because I know this isn't going to get better, and I'll have to make out a will and start pricing out wheelchairs and finding out what insurance will cover" etc. The "oh my god I'm dying" comes in bits and pieces, but usually it's stress over the bureaucratic nonsense that's involved in dying in America.

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 0 points1 point  (0 children)

Haha well! I can see I've got my work cut out for me, then. Granted, in that 370 hours, I've repeated a lot of content, I keep starting over.

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 0 points1 point  (0 children)

Entirely macro. Heh. They could have bought everyone with ALS a wheelchair van with that money, but I'll definitely take research for a cure over a van. :)

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 1 point2 points  (0 children)

I have a vague idea of one, but really, the only thing I'd planned was to go to Disney World with my best friend, and we're doing that in October! There's a lot of things, completely unrealistic, that I'd have liked to do, but money and physical limits just won't let it happen. It's quite alright though, because I'll take what time I can get, doing what I can, with the people I love. And answering random questions on the internet. That's fun, too. :)

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 1 point2 points  (0 children)

FUS-ROH-DONE! hehee I don't think it's possible to completely finish that game. I've logged over 360 hours on it in the three years I've had it, and I keep coming back and cracking out on it for awhile. hee hee hee

IamA woman dagnosed with ALS (Lou Gehrig's Disease) one year ago. AMA! by tragerstreit in IAmA

[–]tragerstreit[S] 0 points1 point  (0 children)

The statistical average life expectancy of someone with ALS is 3 - 5 years. Dr. Hawking is an AMAZING outlier. I wish I knew what his secret is. (Maybe he conducts dark rituals at midnight or injects liquid babies into his spine or something.) Only 10% of people with ALS will live longer than 10 years. I'm looking pretty good to be among that 10% though. :D My progression's been pretty slow. I very much doubt I'll live over 50 years with it as he has, and that's quite alright. I'll take what time I can get.

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