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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

Episode 20: Mercersburg’s Awesomeness

Episode 20 : “Mercersburg’s Awesomeness” — Mercersburg, PA, Matthew Mason Bailey learns about Tim’s fight against ALS and decides to throw a benefit concert on behalf of the Often Awesome Army.

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

For more information on Often Awesome The Series Click Here

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

Episode 19: Who Cares

Episode 19 : “Who Cares” — The Often Awesome Army gears up to take charge of Tim’s Quality of Life Care.

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

For more information on Often Awesome The Series Click Here

Tuesday News

Hello lovelies!

I know many of you are worried about our Timothy and I wanted to put out a word, even though there isn't much to update you on. I'm sorry if I'm getting repetitive!

Tim has received the official word that he does have MRSA pneumonia. He is, of course, overwhelmed and scared but he is also incredibly appreciative of his amazing army.

He won't be going home for at least a few more days so he asked that someone get him a copy of this week's True Blood. He doesn't need a disc, a data file will do the trick. Just because he's stuck at the hospital doesn't mean he doesn't need the scoop on what's going on with Sookie!

Thank you guys a thousand times for being patient with me if I haven't responded to you yet or haven't answered your questions. If there is something specific you'd like to know, feel free to email me. I can't promise that I'll answer you individually but I will try my best to include answers in the updates.

If you would prefer to read updates via blog rather than facebook, we are reposting all of these messages on www.oftenawesome.org. Links to all blog entries are on the right hand of the website.

all my love,
lis

More News and A Request for HELP!

Ok, army, Bring on the good vibes. Tim was officially diagnosed with Staphylococcus Aureus Pneumonia (which may or may not have drug resistance, i.e. MRSA) today. He also had another mucous plug that took about 45 minutes to break up before he was able to breathe normally again. I can't even begin to explain to you how scary that is for him.

Tim wanted me to tell you guys that he loves you. He also wanted me to tell you that this is a big deal and he's overwhelmed but that he's a fighter and it is the love coming from all of us that gives him the will to fight. He needs lots of affection right now.

His main gripe: The hospital has blocked access to netflix and facebook and that's really pissing him off. He wanted me to ask if anyone had either a netbook with 3g service or one of those USB thingies that allows for 3g internet access. He said that he would happily reimburse anyone for the cost or the time lost. But the hospital is friggin boring and Tim deserves to have the things that make him happy, right?

Thank you to everyone that has messaged me about visiting. I've got class this evening but am plugging through the messages and will get back to you pronto, I promise! If you sent a sweet message but no offer to volunteer, I will still get back to you but will probably do it after I message everyone else. Holy crap, you people are amazing, by the way.

love x 1000,
lis

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