The Results Are In

Sam became quite the celebrity because of our video

Most of you know that we submitted an adorable video of Sam telling everyone what he would do with $1,000 to a contest in hopes of winning a first-class trip for two to Las Vegas. We did not win - in fact, we were disqualified unfairly at the last minute. But truth be told, there was never a dull moment from the time we made our submission. Here's the whole story.

We Can Win This!

From the moment Todd found out about this contest, he was excited in a way that I truthfully have never seen him excited about winning anything. "We can win this" he kept telling me. 

He had the perfect idea for the $1,000 - giving it to his cousin Fran's three kids for a college fund. Fran has been fighting breast cancer for four plus years. She is currently in end stage. It was an awesome cause and one that all of our family and friends would get behind to support.

I came up with the idea of having one of our dogs star in a video - Sam got the part because he was able to sit still for longer! We wrote some dialogue, got Sam on the couch with the incentive of a handful of treats and with two takes and some amateur video editing - voila! - the Sam video was born.

The Honeymoon Phase

Things were going great for the first few days! We emailed our family, friends and co-workers; folks were on board and excited to vote. Fran was thrilled. We were only the second video up on the site and we were killing the other ones that joined after us. We were feeling cautiously optimistic that we had a good chance to win.

The First Incident of Drama

About a week in, a very negative comment appeared on our video from someone who claimed to be representing (i.e. was hiding behind) a high school "Students Against Destructive Decisions" (the evolution of the Students Against Drunk Driving) group The comment went something like this: Shame on you for trying to win a trip to Las Vegas for yourself by trying to gain sympathy off of someone with cancer.

The person went on to say that if we really cared about people with cancer, we would give the trip to the person with cancer instead of taking it ourselves (against the contest rules) and we would donate the $1,000 directly to people with cancer. Uh-huh.... Clearly this person missed the point of the contest being to say what we would do with $1,000 and that it would most definitely be benefiting someone with cancer.

In any case, we were completely offended by this guy's comment, although it was also obvious that he was just a young, idealistic kid spouting off so we didn't take it too seriously. A little digging into who exactly this guy was  (the guy was two years out of high school by now) revealed that he was a friend of one of the other contestants - scandalous! We contacted him and he removed his comment promptly - hopefully with his tail between his legs.

Things Heating Up!

From the time that Paul posted his video asking for help paying medical bills and a remote control truck for his son, we knew he was a real threat. We already had a lot of votes at the time but he was acquiring votes at a rapid rate. Still we did our best to encourage our friends and family to keep voting.

Something Suspicious

At the same time, we started to notice something fishy about how Paul was acquiring votes. A little digging revealed that he was part of a ring of vote swapping people who trade votes to win contests. We felt this was incredibly unfair and, after getting sufficient evidence, contacted the credit union running the contest to let them know what was going on.

We asked them, if Paul is doing this, then can we? They said yes. Caught up in a 'fight fire with fire' moment, Todd did solicit a few votes for our video in this manner. But he quickly stopped, feeling like it was not right and deciding that he would rather lose the contest than win that way.

Resignation

The last week or so of the contest, we were pretty much resigned to losing. Paul was acquiring votes at a pace we could not match. He finally passed us and just kept going. Todd emailed our family and had the idea that we should give money to Fran's kids for a college fund regardless of the outcome of the contest. People agreed and there we sat, waiting out the end of the contest, half-heartedly continuing to vote and asking for votes.

A Crazy Turn of Events

At the 11th hour - literally on the afternoon of the last day of voting - it came to our attention that Paul's video had been disqualified. (This was thanks to some of our family members also catching on to the voting scheme he was a part of and emailing the credit union with ample evidence.) We were overjoyed! Not only were we sitting pretty to win, but the cheater had been thrown out as he rightly should. Still, we tried not to get our hopes up until it was over. Midnight came and went and we went to bed feeling pretty darn good about winning that trip to Vegas.

Disqualified - What?!?

We woke up the next morning to find out that we had been disqualified. For what? For soliciting votes. WHAT? That made absolutely no sense: we had turned our competitor in for this very thing and had not done it ourselves until the credit union people said it was okay. We were furious - and confused - and our email rebuttal explaining our defense went ignored for an entire day. We were on pins and needles - Todd was in a funk like I'd never seen him, he barely ate that day.

By this time, we were resigned to losing, which sucks but is okay, but feeling completely unfairly accused of (essentially) cheating, which is most certainly NOT okay. Todd felt horrible, like he let down everyone he knows, because he knew all along that the vote solicitation was wrong but had gotten caught up in wanting to beat someone who was playing the game unfairly (after getting permission it was okay!)

Unsatisfactory Closure

All we wanted was an explanation, an apology. After multiple emails and a 20 minute phone conversation with the VP of Marketing at Coastal Federal Credit Union, I was able to be sort of okay with it. If the guy hadn't been so nice and understanding of my point of view, I would assuredly not be okay with it.

The basic deal is that they messed up badly! The person who told us it was okay to solicit votes had been wrong. The regular person overseeing the contest was out that week and someone filling in for them had responded quickly and incorrectly (brushed aside) our complaint about our opponent. At the end of the day, they had to disqualify both of us for having solicited votes - even though they said it was alright for us to do that. And unfortunately, they couldn't ever officially admit their errors because (I think) it would be grounds for a lawsuit.

It isn't fair. Not at all. But we aren't interested in doing anything more about it. We just want this to be over and behind us. So that's the story! Crazy, huh?

We want to sincerely thank everyone for their support throughout this. As a number of people have pointed out, Fran's kids still win (maybe even more!) because we have set up a place for people to donate to their college fund. If you can, please go and make a donation - small or large - it will mean so much to us and to all of our family.

http://www.gofundme.com/ThreeGreatKids

In the end, it was all about Fran.

Photo credits from this blog, starting from the top: Sam video (me); Vegas Strip, wikipedia.com; Hangover guys on roof, endodds.wordpress.com; SADD icon, yonkers.ypschools.org; Piled in medical bills, online.ciu.edu; Vote for me penguin, tracyrigden.blogspot.com; Clock, depositphotos.com; Disqualified guy, ogosense.com; Cheated not defeated, sodahead.com; Todd and Fran (me).

A Litte Less Intensity...and Snow!

Doc (aka Crazy Dog) has a dog version of a snow angel that he likes to do. Here he stops for a moment to pose for the camera.

Sam chewing on a snow ball - literally his ball covered in snow! Doggie heaven.

My last few blogs have been pretty intense but this one's going to be a lot lighter.

It was a good week overall, filled with all of my new normal things - pulmonary rehab, paperwork, appointments. We were pretty much Olympic-watching junkies all week long. I enjoy most everything except for curling - check out this video to find a much better version of curling involving cats.

Is that your final answer?

Monday was a bit of a sad day. It was the day that I told my bosses that I would not be coming back to work. It was extremely difficult, but I know that it is the right thing for me to do. Still some processing to do, but I took that first difficult step. I have given myself a working title of "Stay-at-home-fur-kid-mom."

I am also finding my way quite well with all of the disability stuff. I got some much needed free legal help with my long-term disability and am officially in the queue to get free legal help from another place to apply for SSDI. That is my next big project.

*     *     *

I am hoping that this round of IVs will only last for two weeks. Things are going really well - my lungs have improved quite a bit, my kidneys are handling the meds well and I think that I managed to not catch a cold that Todd caught mid-week. This coming week I see both my pulmonary doctor and my ear, nose and throat doctor to test my hearing and check in about sinus issues.

Other than that, I have been six weeks without alcohol and it has never been more difficult not to drink than when we were snowed in for two days! But I did it. I have actually been a little tempted since then, just wondering to myself why it is I'm doing this and what exactly I hope to get out of it. I'm not sure the answer, but something tells me I need to stick with it for now. And so I will.

A Rapid Change of Heart

Sun, samhainmoon.blogspot.com

First of all I want to apologize (sort of) for what I see as the negativity/harsh reality of my last blog. I'm not apologizing for what I wrote, or how I was feeling exactly. What I was going through at the time was the very tip of the pendulum swing before it came back the other direction. And while that is important information for me to process, I know that it must be hard to read that. So sorry for the rawness of it I guess.

A very cool thing happened after I wrote my last blog on Friday. As soon as I got out all of my angst and reservations (sorry for the cheesy metaphor coming) the clouds began to lift and the sun peaked out - it's now shining bright.

Lung pillow, iheartguts.com

Here is what I now know:

• Transplant is seen by many cystics simply as "the next step" after your lungs start to fail. But just because transplant isn't second nature for some of us does not mean that it cannot still be the next step for us.
  
• A lot of people don't get a second chance, and I might be lucky enough to be someone who does. (Just because I go to get evaluated doesn't mean I will be accepted, although I think the odds are good.)
  
• I have gotten to a place where I can honestly assess the toll that CF is taking on me and I'm a little freaked out about how quickly things seem to be progressing - IVs after only a month?? A month during which I did very nearly everything perfectly and didn't even catch a virus???
  
• I would rather go to Duke early and have them turn me away for being too healthy than to for some reason quickly decline and be too late to get evaluated and listed. (I am still too healthy, as far as I know.)
  
• I can do this! I am starting to believe that I could do well with transplant, and to picture - and be a little excited about - what that life could look like.
  
• Not to overlook material "needs": I have decided that I need an iPad to go through all of this - doctors, hospitals, waiting around...entertainment! I am seeking donations and/or super family or friend discounts!

Heart, illustrationsOf.com

And here is the other part which again (sorry) is kind of hard to say to you all. It absolutely breaks my heart to think of Todd, the kitties and our dogs existing without me...of my parents having to go through losing a child...of all my family, friends, co-workers, acquaintances, heck, all of planet Earth going on without the one and only Laura Pancoast Smith.

BUT - I can't base my decision on any of that, it wouldn't be right, and so I have challenged myself to look deeper, past (what I see as) those "easy answers" for getting transplanted. It's like with my job: It doesn't matter how much I love it, I have had to decide what's best for me by setting aside that love and looking to what is best for me. Which is really hard to do - in both cases - when you are surrounded by so many amazing people (and animals.)  :)

That's all for today...  Thank you for reading.

This Is (Explicative) Insane

It's as if I've woken up and suddenly realized how insane my life is, how sick I really am. How did I last this long working and essentially living a normal-ish life?

My days are nearly completely consumed by taking care of myself: doing treatments, refilling medicines, ordering oxygen, going to doctor's appointments, handling insurance issues, boiling nebs, taking pills, going to pulmonary rehab. If going on disability is akin to retirement, this is not seeming very 'golden.'

The Disability Reality

The process of applying for disability really makes you face reality.

Here is me on paper: an incredibly sick 35-year old woman with terrible lung function who may not have long to live without a transplant. Sobering. And quite a different picture than I normally have of myself. The lawyers tell me this means I shouldn't have any trouble at all getting approved for disability. I wish that made me happy.

Where I Am Now

I am trying to come to terms with where my health is, where it is going, how much time I might have...and whether or not I want to pursue transplant. I am having a hard time picturing what life would look like after transplant. What would I want to do that I haven't already done?

Here is part of what I posted in my CF group, Older & Wiser, yesterday.

I can't shake the thought of what if I do it [transplant] and then it goes horribly wrong? And then I am dying all over again. Except that I have no idea what's going on because I only half still have CF. And I've had to go through this major fucking surgery to boot.

...When I think about what I would want to do I think of spending time with my family, especially my little nieces and nephews - OF COURSE I want to be around for them as long as possible. But they are going to lose me eventually anyway. What difference does a few years really make?

I feel like I have already done a tremendous amount with my life. I have traveled all over, I have amazing friends, I am a talented writer and I have had a relatively successful career.

There is nothing (or not much) I am eager to do that I haven't already done...although I would certainly like to spend more time doing the things I already love doing. But that will ALWAYS be the case. There will never be enough time with the people I love - ever. So I'm wondering...is this it? Am I done? Is it greedy to want more when I've already had so much?

I have progressed a little more past what I wrote yesterday. Todd and I sat down and talked about things we'd like to do if I had new lungs. That was nice. There are some things we haven't been able to do, and some things we want to have more time to do.

But the truth is, I feel like I'm running out of time to make this decision. And I'm starting to get a little bit scared.

I'm Sick - Again 

And no, I'm probably not in the best state of mind right now. I'm down, depressed, feeling mopey and defeated. I woke up yesterday with a headache, fever, chills, aches - got tested for the flu just to rule that out. I had been feeling sick/run-down off and on for the past few days. Last night I woke up with a pain in my left lung that kept me up off and on during the night. (When the lungs get inflamed, sometimes air can get trapped in the little air sacs and make certain positions and deep breaths uncomfortable.) Blah blah blah blah blah, right?

I am starting on IVs today - again - I made it a month and four days since last being on them. My doctor is increasingly hesitant to start IVs unless absolutely necessary because of my resistance (I now essentially have two virulent bugs that are resistant to almost everything.)

This is INSANE. This is what a person looks like on paper when they are getting to the point of needing a lung transplant. I am what a person looks like on paper when they are getting to the point of needing a transplant. Me. ME. Me??? It's not how I've pictured myself, but here I am.

 

The Art of Busy

I am making an art out of being busy - that is, I juggle a million things with ease and manage to arrange them into one beautiful design, all with the grace of a dancer. Sort of.

What I really mean is that I have been trying to get a tremendous amount done while also being mindful of my health and energy levels first throughout the day. It's quite a shift for me from go-go-go.

I have been consumed the last two weeks with both our bathroom renovation (choosing, ordering, trips to hardware stores...) and starting the process of applying for long-term disability through work (paperwork, paperwork, paperwork!) Not to mention all of my regular stuff (pulmonary rehab on Tuesday and Thursday, acupuncture on Wednesday, getting my allergy shots 40 minutes from home, arranging oxygen delivery, renewing prescriptions, other appointments, a hockey game and time with friends here and there...) 

Oh, and I am also starting to plan a bachelorette party (I am the maid of honor after all!), trying to get my handicap tag from the DMV (urgh!), revisiting my physical therapist from pre-surgery to get my back pain under control (it's getting better) and making preparations to meet with a lawyer who is going to do our wills. WHEW!

And I am doing all of this while contemplating two of the biggest questions I will ever have to answer in my life: Is it time to stop working? and, do I want to pursue transplant? And the hundreds of sub-questions that go along with both of those.

But, I am pacing myself. Thanks to not drinking, my head is in the best possible place to make these hard decisions and tackle all of this stuff. And since I started ginseng/acupuncture I have had more energy which is awesome.

All and all things are going pretty well. My back pain is getting better thanks to PT, restarting my stretching and acupuncture. Pulmonary rehab is going awesome - I absolutely rock the place every time I go. I am needing a little less oxygen to get around - more for exercise than simple exertion. My PFTs...still bouncing up and down and pretty much the same as they have been.

But I would be lying if I said I thought it was possible for me to recover in a way that I have recovered from infection/exacerbation before. I am clearly in a new stage of my disease - I feel it, my numbers show it, people who know the most about me can see it. I might even call it "the coughing fit stage" because I have never had as violent of coughing attacks as I have in the past weeks. (By the way, for those who think I "look great!" Thanks for the compliment, but please remember that CF is an invisible disease.)

My lungs are decaying and there is no question: we are on the road to transplant. If I have my way, the road will be long and windy. I would love to go on disability and live for 10 more years before needing a transplant! If anyone can do that, I can.

So anyway, please wish me luck in this process of applying for long-term disability. From what I have read, I need to suit up in a coat of arms. I am NOT looking forward to defending myself for deserving this. That is incredibly hard when I have already needed so much external help to realize this is what I probably need to do, what is best for my health.

When it's all over, a huge celebration will be in order - maybe even including a Blue Moon or two. :)

p.s. I should say that I have not 100% decided about going on long-term disability right now. But my HR person has advised me to start the process to find out if I qualify. It will be good to know even if I don't end up needing it now. But lord the paperwork!