Neuromyelitis Optica - #%^& You NMO!

[Engels]

Then put something cheapish on the wishlist. Seriously, if they can't spare like $30 bucks plus shipping, then they have no business donating jack since they're in worse trouble than you are.

[Slayerik]

Sorry, I edited that out on you. Yeah, I have a wide range (10 dollar gift card up to 500   ) just in case :)

and updated thread title.

[Viin]

I think you need to create a registry (wedding or baby) in order to have stuff shipped to you. Wish lists don't have your shipping address tied to them.

[Engels]

I think you need to create a registry (wedding or baby) in order to have stuff shipped to you. Wish lists don't have your shipping address tied to them.

That shouldn't be the case at all. Just need to make sure your address is associated with your wishlist. http://www.amazon.com/gp/help/customer/display.html/ref=hp_rel_topic?ie=UTF8&nodeId=501088

Entering Your Shipping Address
When you set up a shipping address on your Wish List, it will remain confidential, and anyone buying items for you will only see the city and state portion of your address.

To set up a shipping address for anything ordered off your Wish List:

Click the Your Lists or Wish List option at the top of almost any page of our store.
Click on Wish List in the drop-down menu.
Select Show list profile if it isn't already displayed below your name in the left column.
Click the "Update this list's profile" option.
Update your address in the "Ship-to Address" section. You can also update any other information listed.
Click the Save button at the bottom of the page.

[Merusk]

I'm always amused at the "Buy new and used" tag on food items. 

Tho I'd rather send you cash because dude.. I can't in good conscience send you processed food.

RFI:  Diaper size.  Pic is size 4, link requires a choice.

[Slayerik]

Diaper size 4 , ejharris@umich.edu if you just want to send cash via paypal - list it as a service maybe?

Updated address in Wish list, thanks.

[Mrbloodworth]

How can one just send you money?

[Mrbloodworth]

ejharris@umich.edu if you just want to send cash via paypal - list it as a service maybe?

Please enter a valid email address in this format: name@domain.com

I Tried Paypal.

[Jayce]

Tho I'd rather send you cash because dude.. I can't in good conscience send you processed food.

Good call, though I think the Annie's stuff is pretty darn natural.


Not that I want to be responsible for dissuading you from sending cold hard cash! 

[Slayerik]

I verified that's the right paypal email...weird.

Finally got a minute to log back on here and wow, you guys rock. I am truly touched by the response, thanks so much for the help. My life is crazy, but it's crazy cool right this minute.

[Cyrrex]

Sorted...I don't know how these wish lists work, but I think you need to go add some more stuff to yours. 

Hope there will be enough there for you to have a little fun with it, too.

[Slayerik]

Wow, you guys really chewed up that list and spit it out. I figured out the card thing better, and you can pretty much pick an amount now and do it digitally. Added some bed sheets cause ours have seen better days due to some issues... And diapers and baby onesies, cause well with baby twins you can never have enough!

[Merusk]

Yeah, just but tons of diapers on there.  I didn't get a chance to do it yesterday because I'm on a project deadline and was at the office until midnight.  I plan on buying you some but don't carry my credit cards these days so can't get to it until I'm home.

[Mrbloodworth]

I verified that's the right paypal email...weird.

It may be, but I can't enter it in the paypal "Send money" area. It seems to want a "real" e-mail.

[schild]

I am about to rain on this parade. But first, let me say I have no problem with what's happening here.

That said:

The next time one of you wants to do this shit (i.e. ask for donations, handouts, etc) - CONTACT ME FIRST. JESUS. One, while Slayerik may be some measure of trustworthy not everyone is. This is the internet and I find this shit abhorrent. I would have interest in setting up channels and such to do this, or being a custodian in it, because quite frankly, the only people I trust here are myself and my staff.

If this happens again, I'm going to lock the thread and contact the person to find out what the fuck before money starts getting thrown about. Other concerns are "why are people airing this private shit on the internet instead of dealing with it through family," etc. I want this shit to be on the up and up and this thread came out of the blue.

That's all, carry on. Slayerik, I hope everything turns out OK and understand that this was not a post personally directed at you. I'm just a fan of taking action once something becomes an issue, rather than prior and guessing.

[Mrbloodworth]

I don't think he asked, we offered. That said, your warning is wise.

[schild]

I know, and that's not how it will work in the future. When it comes to shit like this, there is no "We" there is only alpha and omega, which is me. But like I said, I'm letting this one run its course. If dumb shit happens, I wash my hands of it.

[Slayerik]

Yeah, I hear you Schild. I started the thread as a place for general questions about paralysis and Guillian Barre Syndrome (which it didn't end up being) and things took a pretty awful path for our family. I wouldn't have asked for help, but many people showed interest and even Trippy got the ball rolling with the Amazon suggestion.

Either way, I understand and respect your request. I hope I didn't come across as begging on your board man. I will say you all have truly helped our family out, Angie was shocked when I told her about it. She is a person that is like overly kind, and to me maybe this is karma trying to help her out a bit.

Anyway, it's an awesome community here. Thanks again everyone.

[schild]

To be more specific, if it were JUST an Amazon Wishlist, I would have said nothing. Because that seems cool. But once money comes into the equation, shit gets hairy.

[Engels]

More poop disposal remedies on the way.

[Trippy]

Trippy got the ball rolling with the Amazon suggestion.

I've been telling schild to setup a Wish List the last two times he's been unemployed but he refuses -- all he wants are Magic cards

As an aside, since we're talking about Amazon Wish Lists, Amazon Japan setup special Wish Lists for the schools and some other organizations in the areas hardest hit by the earthquake/tsunami. I just happen to have an Amazon Japan account >.> <.< and found it an ideal way to donate to those in need over there since I knew all of the money I was spending was going 100%* to helping directly and I was purchasing items they specifically wanted.

* Minus the credit card currency conversion fee

[Strazos]

-- all he wants are Magic cards

 

Maybe once I figure out how much my car will take to fix I'll meander back in here...

Assuming this country has internet access that day. 

[Slayerik]

So, please PM me if you bought us food as Angie accidently threw away the info from that. Thanks everyone, again, for the support. We were truly touched by the generosity shown here. Hopefully, next time I post in this thread I will be telling you how she is walking again!

Also, Annie's makes some good food!

EDIT: her recovery has been slow and steady. She is on some device in outpatient therapy called the Lokomat ( http://www.youtube.com/watch?v=PufPyEHDFpQ example). She has been lifting her legs, and using her hip muscles, as well as regaining a little strength in her right leg. Left is her 'lazy leg'. She decided a week ago that she would break out of negativity and beat this thing and walk again. The first couple weeks were rough.

[tgr]

That's good to hear. Here's to a continued improvement.

[Khaldun]

Somewhat relevant:

http://www.amazon.com/Blue-Water-White-Robert-Samuels/dp/0984019413/ref=sr_1_1?ie=UTF8&qid=1331736602&sr=8-1

[Slayerik]

Angie had some blurry vision in her right eye, so we took her in. After a 3 day hospital admission and steroid treatment, there is a clinical diagnosis of Neuromyelitis Optica (or Devic's disease).

Seriously, don't even look it up. It's depressing as shit. It was basically something we were very relieved it was not when a certain test came back negative. I find myself now thinking "when will the next big attack hit her?" The scariest thing for me is that she will work so hard to walk again, and then BAM it'll all be gone. But I guess in life you can't stress yourself out over shit you can't control...so fuck it. Sorry to vent here, but for whatever reason it helps.

I wanted to post this here, as many people have reached out and also asked to be kept in the loop, and as much as I had hoped to bring good news it just keeps sucking. I had been given some good advice by a friend here in a PM, and I am going to try to follow it:


"Do the thing in front of you.  Then the next thing.  Once there's nothing left you can do that is useful, *then* you can fall apart."

Her vision seems to be recovering. There are some treatments that can shut down these relapses pretty well. I WILL stay positive. There is nothing in stone with any of these stupid fuckin' disorders.

[Kitsune]

That's no party to have, but if they've actually pinned down the culprit then at least now they can be focusing their efforts into treatments that will actually be effective.  Better to know it's something bad and have a working plan to deal with it than to have no clue what's going on and blunder around.  Keep the faith!

[Sky]

"Do the thing in front of you.  Then the next thing.  Once there's nothing left you can do that is useful, *then* you can fall apart."

That's a great quote, use it like a mantra. I hope things improve drastically for you guys.

[Engels]

That blows, Slayerik, but at the same time, I have to think of your woman, and how SHE lucked out, in a way, in having  you as a partner when this hellstorm hit. I imagine how screwed she'd be if she had your average joe, who'd panic and flee from something this scary. Mad props to you and keep your chin up. One thing at a time and you'll get through.

[Miguel]

That blows, Slayerik, but at the same time, I have to think of your woman, and how SHE lucked out, in a way, in having  you as a partner when this hellstorm hit. I imagine how screwed she'd be if she had your average joe, who'd panic and flee from something this scary. Mad props to you and keep your chin up. One thing at a time and you'll get through.

Indeed.  Gingrich would have bailed the first time she sneezed twice in a row.

[Slayerik]

Good update!

Angie continues to rehab 3 days a week in PT. She stood for the first time under her own strength recently, and we hope to continue with positive milestones. She has not had a re-occurance of the disease, but she is on high dose steroids for a while longer. Her last Chemo treatment is Saturday. This is doing a number on her physically, with weight gain and hair loss, but hair grows back and weight can be lost. She suffers with muscle spasms a lot, especially at night. Her nerves are still quite shot, and is in a lot of pain.

I personally quit drinking. I was at the point of drinking every other night to drown my sorrows but life is too short to spend half of it hungover and tired, and I have too much on my plate for it. So that's that! Now my new addiction is Diablo 3...as well as the rest of my family.

She is still brings up the people on here, and was amazed by the response. Cheers

[HaemishM]

Congrats on the standing and the quitting drinking thing. I hope things continue to improve.

[Sky]

Cool, glad to hear things are going relatively smoothly.

[Mrbloodworth]

Glad to hear it man. Just keep doing the thing in front of you.

[Lantyssa]

She stood for the first time under her own strength recently, and we hope to continue with positive milestones.

Fucking awesome, dude!  \o/