lis's blog

The Series

Darling Army,

For those of you refreshing your browsers, waiting for the next episode, I have some bad news and some good news for you.

The bad news: You're gonna have to wait a little longer. From now on, episodes will premier on the 15th of ever month.

The good news: Episodes will be longer and somehow, they have it in their head that it could possibly be better! I would be skeptical (seriously, how do you get better than that last episode?) but those dudes always somehow manage to come through. Also, Andy and Blake have big plans for community involvement and event organizing. Andy said, "We're going to take it to the next level." I don't know about ya'll but I'm super stoked.

Currently, Andy is stuck in Massachusetts with no power and Blake has a high fever. Once the universe quits conspiring against them, they will be in touch with more information.

Love love love!!!

Lis Tyroler

Holiday Info and Help Request

Darling Army,

For starters, thank you guys again for all of the offers and attempts to help last night and this morning. You do my heart good.

Also, I've gotten a few requests for a holiday gift template , so I had the talented Michela Maxwell whip one up!

Click here to download the card as a PDF

Click here to download the card as an Image for email

Also, Kate McNeely has created a brilliant holiday email tag to promote OA PayPal subscriptions.

It can be found here: http://oawebfiles.blogspot.com/2010/12/holiday-email-tag.html

Finally, we are in need of coverage on Christmas day from 11am-3pm and it is possible that the usual suspects may be unavailable. If any of you Greensboro folks aren't into celebrating Christmas OR you want to do something that embodies the spirit of giving, shoot me a line and we'll get you trained up before the big day.

Infinite love.

lis

Paypalmergency and November Update

Oh delicious, fantastic, amazing Army,

This month, we are especially in need of your generosity and support. Over half of the paypal subscriptions will be expiring at the end of November. Without your gifts, it becomes very difficult to take care of Tim and provide him with the quality of life that he deserves. While we dream of a day when OA will be a non-profit and we can organize funding in a more professional way, right now, we rely completely on those subscriptions to take care of Tim. You can give as little as $5 dollars a month or as much as $50. Last year, along with many other people, I used my OA subscription in place of Christmas and Hanukkah presents. Rather than give my friends and family a bunch of stuff they didn't need, I chose 12 people in my life, and rather than buy them presents, I gave them each their very own month of OA sponsorship. I created cards and included a letter that described Tim, ALS and Often Awesome. If this is something that generates some interest, we'd be happy to make a template for you guys.

Please renew your subscription or begin a new one here: http://www.oftenawesome.org/?q=node%2F3
**********************

I know you guys are all wondering how our boy is doing. Tim can no longer speak without his Tobii. We are waiting on a new one that will allow him to communicate when he's not in bed. He's now on an all liquid diet, but don't worry, he still enjoys a single malt scotch through his tube (we put just a single cc on his tongue). Also, he is in much better spirits now that his depression and pain meds have been adjusted. Our Timmy's fighting spirit is back in full force and his gears are turning. Expect big things. We're gonna take advocacy to the next level, my friends. Oh, and he wanted me to ask you guys to send the trailer to every person you know!

http://www.youtube.com/watch?v=4-FpROeybeI

Also, don't forget to keep sending Tim mail!! He loves it and hasn't been getting much lately!

OAA
c/o
Angela Cook
P.O. Box 606
Summerfield, NC
27358

********************

Sigh. Have I mentioned lately how much we love and appreciate you? This crazy thing we're doing has expanded beyond our little community. Often Awesome has developed into something bigger than we ever expected and now has two distinct roles. Initially, we formed this group for those of us that loved Tim, wanted updates, and needed to know how we could help. As time progressed, we saw the impact that our story was having on a larger community. Tim became keenly aware of his mission to spread ALS awareness.

This thing is no longer simply about Tim. Often Awesome has officially become a full fledged ALS awareness movement. The web series has allowed us to reach a huge audience and has moved so many people that don't even know Tim. Of course, in addition to Andy and Blake's genius and Tim and Kaylan's amazingness, the web series is so powerful and moving because of YOU. When I ask anyone which episode is their favorite, inevitably, they will describe an episode that really highlights the community love and support. Without the beauty of our human interaction, this movement simply couldn't exist. Like I've said before, you can't think about the Often Awesome Army without feeling moved by the beauty of a community's capacity for love and generosity. So thank you guys. As lengthy as this email has gotten, there really just aren't words.

love love love,
lis

Halp!

Well, the good news first. Tim's health has been pretty stable lately and things have been going pretty smoothly. So, even though it doesn't sound very eventful, it's still good news!!

The bad news and reason for the email: Kaylan was in a fender bender today. This means that, while she can still suction Tim, she can't perform her normal care duties... meaning range of motion, getting Tim in the sling, propping Tim up, etc.

For the next week or so, I'd like to schedule people from 5:30pm-11pm, with a special emphasis on the 8pm-11pm shift. This weekend will require coverage during the day. People don't need to be trained, since Kaylan can handle the vent/trache related stuff- you just need to be willing to do some heavy lifting!

Facebook me, email me (info@oftenawesome.org) or text message me (336.339.9668) and we'll start getting the calendar sorted out.

I'll keep you updated!

----------------------

On a non-care related note, I'm going to start bugging you guys about nominating Often Awesome the Series for the Mashable Awards in the category of Most Creative Social Good. This is a great way to spread ALS awareness!! Remember to vote daily and to share on facebook as much as possible!

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Halloween:

The amazing Sarah Nees pointed out how awesome it would be to show our Often Awesome army support through pumpkin designs. She made some badass templates to share with the group and I'm sorry I'm only getting around to it now!

See here:

https://docs.google.com/fileview?id=1_mkGKDt5GXd89Ep2W6ChShF9iY-tLr54dM4...

and here:

https://docs.google.com/fileview?id=10vcBWUEdG7UVgmEHjAQwdJfWGkGiGWxkQm9...

love love love, amazing soldiers.

lis

The Internet Loves Us!

Hello, darling Army.

There are some exciting things going on right now in addition to the upcoming benefit.

First of all, as you may have noticed, we've been making a lot of changes to the website (www.oftenawesome.org), thanks to the hard work and skills of Will McChesney. It's a work in progress but we're committed to keeping it maintained this time around! Michela Maxwell is working on an improved design for the site and has completed... drum roll please.. an Often Awesome Etsy shop!!! Check out the website for fabulous gear designed, created and managed by our very own design genius, Michela- including t-shirts, stickers and buttons!

OA has been getting a lot of attention on the interwebz lately.

Please take a moment to stop by Leigh Peele's blog to read her phenomenal call to action, inspired by Tim and his army.
http://www.leighpeele.com/humans-often-awesome

Additionally, the Hack Ability Blog (DIY for People with Disabiliies) has published a review of our website and our fund raising movement. Please go show them our appreciation: http://www.hackabilityblog.com/

Share these links on facebook, twitter, blogs and anywhere else you can think of.

If you guys know of any other presence we have on the web, feel free to message me and I'll include them in my next update.

A thousand hugs and kisses to all of you amazing people. The internet loves us. Go love it back.

lis

Message from Timmy

hello everyone. i realize that it's been awhile since i've updated the wider community to my condition. i think that most of you have correctly assumed that unfortunately i haven't taken to ventilation as well as other patients have. i don't know if this is because i have sod1 als (the most aggressive form for those who may have forgotten) of if it has just been bad luck. suffice to say i've spent far too much time in the hospital in the last 2 months.

my first return to the hospital, as most of you know, was due to a rather vicious case of mrsa double pneumonia. however, after what was supposed to be my triumphant return home i found myself back in the hospital due to a never-ending stream of blood being sucked from my lungs.

kaylan and i have faced our fair share of challenges during the course of this disease but this past week has been the hardest by far. there have been never-ending problems with the hospital system that neither knows anything a bout als or seems to care to learn anything about it despite that face that i've now spent a majority of my past 2 months here. there have been incredibly intrusive procedures that have left me terrified and exhausted in ways that i never thought possible. there have been numerous fits of suffocation due to mucus plugs and other lung obstructions that had me convinced that i was going to die right then and there. in truth, it's been probably the worst week of our lives.

because of my weakened condition and incredibly unpredictable mental state we decided to keep visits to the hospital limited to family members. this in no way reflects the lack of love and appreciation that we feel for all of you, particularly our friends that live nearby. i'm usually a "the more the merrier" type, but this week was far too overwhelming. i hope you guys understand.

in another sense, this week has really forced our hand in a way that i didn't expect to happen so soon. i honestly thought that by getting the vent i could continue for years but the recent health scares have forced me to consider things that i'd rather not think about at all, primarily the fact that this disease is killing me. i have no choice but to consider the possibility that it may be happening sooner rather than later, whether i like it or not. with this on my mind, i've had to consider many different possibilities and variables. for instance, do i want to start hospice and palliative care? should i continue as i have been and hope that things get better (an extreme unlikelihood when you have a progressive disease). is there a point at which the physical pain and psychological torture that i face daily will lead me to decide to remove my vent and die peacefully? needless to say, i have absolutely no answer to these questions as well as the many other questions that have been swirling through my head all week.

what i do know is this: i don't think kaylan and i have cried more in our lifetimes than we have this week. not only has it presented us with more questions than answers, but it's smacked us in the face with the reality that we don't get to have a lifetime together. that alone is enough heartbreak for a lifetime.

i know this letter strikes a very different tone than my previous ones but i know there's been a lot of questions and speculations about my state over the past few weeks. physically speaking, the short answer is i don't know. the doctors seem to think that most of the blood came from improper trachea suctioning. but the real reason i haven't written is it's almost impossible for me to keep it together long enough to update everyone. But to me, that's not a good enough excuse for radio silence. the truth is that without you guys, i can't imagine the state that kaylan and i would be in right now. your emails, messages, postcards, and letters have been incredibly bright moments for kaylan and i over this very rough period. though many of them have been read through teary eyes, they have been constant reminders of how truly blessed we are.

i promise to do a better job of keeping everyone updated. you have all showed us such selfless love that it's the least i can do. i only wish i had enough time on earth to completely show my deep appreciation for everything you guys do.

to my friends who are nearby, please understand that it may take me some time before i emerge from my shell. Along with my mental state, the hospital provides me with almost no rest. Also, my speaking voice has become very weak, and i can't go for more than half an hour without speaking in a whisper. Because of all this, please call before coming for a visit to see if i'm up for it. Please don't take this personally - you guys are my rock and once i start feeling some of these things out, i'm going to need you more than ever. And to those of you who are further away, i hope that my updates will suffice temporarily until i get my head screwed back on.

please don't mistake this letter to mean that i'm throwing in the towel or giving up. i still have an awful lot to live for. i am simply trying to be as candid as i can be at this very moment. after all, you guys deserve it.

____________________________

From Lis: Just a reminder, if you want to send cards, please send to:

OAA
c/o Angela Cook
PO Box 606
Summerfield, NC
27358

Love From Timmy

Timmy asked me to write and let everyone know how much he loves and appreciates his army. He is exhausted and making some decisions right now so, for the time being, he is continuing to limit his visitors to family. That said, he so very much appreciates all of the love and concern.

No news on the health front!

love,
lis

Diagnostics

know this is a little late in the evening. Sometimes, after a stressful week, a girl has no choice but to go out dancing.

I left the hospital today at 9am so my understanding of what's going on is tenuous at best. I'm gonna do my best to parrot what I've heard throughout the day and I'll get back to you tomorrow if I've misunderstood anything. If I did understand correctly, the CT scan was free of surprises. He has pneumonia. No shock there. I think that they did a bronchoscopy and found some trauma from suctioning but nothing else. They took some samples and sent them to the lab. He will be in the hospital at least until the results come back.

Tim's parents are in town and he's decided that he needs some family time. We'll put out the word when he's decided that he's up for visits from friends. My voicemail box is almost full and I've got an awful lot of messages to respond to. I promise I'll get back to you once I've worked my way through all of the messages!

love love love!
lis

And We're Back

I'm sorry to keep this so short but Moses Cone is the Facebook free zone and it's been an awfully long day. I had to scoot across the street and steal wifi from a restaurant!

This afternoon, Tim was brought back to the ER. Fresh blood came up while suctioning his airway. After a CT scan, he was admitted. They have more tests to run tomorrow and aren't sure what's wrong, although there are some ideas- all of which I'm too exhausted to write out at this moment.

A note to those trying to reach us- many of us don't have cell reception at Moses Cone so if we were supposed to get in touch this evening, we're sorry!

much love,
lis

Home Sweet Home

So, our Timmy made it home from the hospital today, safe and sound! He wanted me to thank all of you on his behalf for all of the support and visits and love. Now he's very very tired and wants rest. For the rest of the week, he plans on not having too many visitors other than the inner circle of caregivers who are trained in trache care. If you really want to visit him, I suggest messaging either him or me to see if he is up for company.

He still has pneumonia in his left lung and has some irritation in his bronchial passageway that may take up to 6 weeks to heal. He says the fight is far from over but he's awfully glad to be fighting from the comfort of his own home.

And on my own behalf, I want to thank you a thousand times for all that you guys have done in the past week and half- The sweet messages, gifts, time, energy and sleepless nights. You guys are just mind bogglingly amazing.

love love love,
lis

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