RBS

Two new things about CF have popped up in the past couple weeks. One was that song I posted about (which was good), the other is on a TV show that debuted last week... and it's terrible. (My short rant was on Facebook, expanded rant below.)

The new Fox teen dramedy "Red Band Society"... oh how this show makes me mad. It didn't look that great based on the previews, but then I learned that there was a character on there with CF so I thought Ok, I'll check it out, even though I doubt it's very 'realistic.' And let me tell you, the whole show is not realistic at all. Basically, it's a show about 6 teens in a hospital written and created by people who have no idea what it means to actually be sick and in the hospital.

The "hospital" itself is overly modern, pretty, hip, and very white. The kids' rooms are very dorm-like, decorated with expensive designer furniture, because they live there (which I've never heard of; living at a hospital.) They ride skateboards in the hall, they smoke pot in the supply room, there's a perfectly furnished rooftop hangout area, they smuggle beer into the hospital and the nurses don't care (they're all underage.) I could go on and on...

All of those things are mind-numbing stupid, but I can almost—emphasis on the 'almost'—look past them because it's a TV show in the teen genre. And I can look past the horrible teen cliché acting, because it's a cliché teen show.

But this Dash character they have on there who has "cystic fibrosis" and is "waiting for a lung transplant"??.... is bullshit. They have the kid smoking pot in the first episode, seemingly running around with no problem, with no IV whatsoever, and just in general having no trouble breathing. Ever. Except when he's trying to 'fake' it for sympathy to smuggle beer into the hospital (and I won't even go there on that one.) Plus he carries around a book from Twilight hoping someone thinks he's a good kid and will award him a transplant based on his fake tastes in books. Pa-lease.

I don't believe for one second that the other diseases portrayed on the show got out unscathed either; I'm sure they have elements that are just as ridiculous.

In truth, he would never be smoking pot because if he DID, no transplant team would ever agree to even consider him because he is a reckless, stupid fool who has a lung disease and is SMOKING SOMETHING! And if the show even kind of wanted to show a character with CF, they should at least throw in a few coughs and moments of huffing and puffing. I realize I may be taking this fictitious show a little too seriously, but come on!

I really hope this show doesn't last long, because this character is a disgrace to people who actually deal with this and anyone waiting for a transplant, lung or otherwise. They should have done a little research before just picking random diseases out of a hat, but hardly anyone is talking about this. Almost everything I can find about the show is good feedback.

Okay, glad I got that off my chest.

OneRepublic Song "I Lived"

Yesterday the band OneRepublic released their new music video for a song called "I Lived" and they feature a boy with CF. Could this be? Could my less-known disease actually be out there, in a famous band's music video? Yep, it's the official video, not like some lesser secondary video they did just for charity. The kid featured is named Bryan, and he's 15, and he's ridden his bike around Colorado raising money for CFF. He also hopes to be the first person with CF to get into the Olympics playing hockey for the USA. Go Bryan!

It's a nice song, and it might just be my new theme song :). It made me cry so much, but it also made me smile.

Anyways, I've included it here right below this. Watch it, enjoy it, cry like I did, and thanks for reading.

On the Mend

Hi everyone. I figured it was about time for an update. I haven't been feeling very inspired to blog lately, even though I am feeling better. I did a PFT the other day, and we are well on our way to getting me back to my normal. With a few more days, I'm confident I'll get there.

It Is Time

Welp, my nine-month run of no hospital stays is about to end. I went to Columbia today and did a PFT and my numbers are down, as I thought they would be. For about the past week or so, I've felt I've been on a slow decline. My goal this time was to catch it before I was ultra sick, which I think I've been able to do. Most times, my tendency is to just push through things (increased cough, more shortness of breath) until things are for sure, without a doubt awful. This time, I'm trying not to do that. So I talked with my docs yesterday about doing a PFT just to see where we were.

I talked with my doctor today and we worked out the details for me to come back for my hospital stay. Who knows how long I'll be there, but we had really good results last time when I was there for the full two weeks. I felt great when I left, and have been able to keep it mostly that way for the past nine months. It's been a good run, I don't have much to complain about. If I can have another similar to it, and go another 6 or more months without a hospital stay, that'd be awesome. If not, well, there are worse things.

TV Weirdness

We've had some weird things going on with our satellite TV service. Suspicious things, really. Not, like, the TV turning on by itself in the middle of the night, but these things are just... suspicious.

On Saturday our satellite lost its signal. It said "Complete Signal Loss", gave the list of idiotic things to check, and then said to give them a call if your problem does not go away. The dumb part is that it wasn't storming, it wasn't windy, and nothing was going on when this happened. Jarrod was watching the TV as it happened; he said it started to get fuzzy, and then it just went out.

After seeing this "Complete Signal Loss" screen for more than an hour, I knew exactly what this meant: we would have to call a service tech to come out here to fix it, which we would also have to pay for, which is stupid.

I knew this because exactly one year ago to the day, we had this exact same problem. At the time, there was a storm, and our TV went out during the storm, which is par for the course; I don't care how many times they tell you, when they're installing your setup, 'No, you have a perfect signal, no obstructions, it should hardly ever go out', they are lying, it always goes out during rain. I remembered it went out on Saturday, we called the company on Sunday, and they sent a guy out on Monday, Labor Day last year, to fix it.

Jarrod called the company today and was aggravated and stern with the service reps on the phone. He didn't yell at them, but he was firm and stayed the course with his point that: No, I'm not paying for a service call for you guys to come fix your equipment that we pay to lease when we did absolutely nothing to it. All of the error codes coming back were saying it was something with cables, and they kept asking if we had moved the equipment or whatnot. Again, Jarrod was sitting in the living room while he watched the signal go out, so no, we did not move anything around.

The first person he talked with wouldn't budge on the price. They kept insisting he either pay for the service call, which is $95, or buy the protection plan for a year, which at $8 a month works out to be $96, how convenient. Once he mentioned he'd have to talk it over with me and that we were thinking of switching anyways, they told him to hold on and they put him through to another person. No surprise there, as soon as you say you'll switch they usually try to work with you, but he wasn't lying. He talked at length with a guy from Charter yesterday about what their TV packages offered and would cost. Long story short, they finally agreed to send someone out tomorrow at no charge! Thank goodness.

Jarrod barbecued steak tonight, which on a normal day would be cool, but tonight it was really cool because he has not grilled anything in for-ev-er. He's been so busy with the basement that he has not had time for it; I seriously think this is the first time he's grilled all summer. After we were done eating dinner, he sat down in the recliner and joked "Let's see what's on the tube tonight."

He turned the TV on and funny story: we had channels again. We were both so aghast. I think I stood there with my mouth hanging open for ten seconds. Lo and behold, our satellite magically works again. No joke.

This entire thing is just so odd. And it's hard not to think up theories and suspicions about it.

• How weird is it that exactly one year ago TO THE DAY this happened, it happens again?
• And for no reason?
• And then after complaining and complaining on the phone, getting them to agree to eat the dumb cost of the service call, hours later, it just magically works again? 
• Really?
• It's almost like, if you put up with it for long enough, it'll fix itself. They just want you to have to pay for a service call. 

Clearly they didn't need to send someone out, because I have a hard time understanding how this went on for two full days with it never fixing itself. But once we called, and complained, and threatened to leave, and they would have to send someone out, for no charge, it fixes itself? Yeah, they had to have done something on their end, otherwise I'd really like them to explain this one to me.

I cancelled our service call. I thought about leaving it where it was and then letting the guy get here and then say "Oh, well, it works again." but I nixed that idea. I didn't want to waste his time. Who knows if we'll still have Dish by this time next year, or if we'll have "cut the cord" by then, but if we still do, I'll know to be prepared for my TV to go out Labor Day weekend.

Number Nine

It's nine months today!! Once again, I don't know how much longer I'll be able to make it without a hospital tune up, but then againi said something similar last month. And here I am!

Ice Buckets

Unless you've been living under a rock, you've heard of or seen the ALS Ice Bucket Challenge videos. My Facebook feed is slammed with videos right now of people of all ages doing this. The TV news has been showing videos as well, ones that celebrities and presidents do. And maybe like you, I complained about it.

Last night I was telling my husband "You know, I'm really tired of seeing these things." And tonight, I'm not even exaggerating, every. single. post. in my Facebook feed that was from a person and not a news source was an Ice Bucket Challenge.  I've seen them pop up from time to time for months, but suddenly this thing is literally EVERYWHERE! And I might be wrong, but I don't think in the very beginning that they were tied to a specific charity, because I definitely saw someone take an ice "bath" for CF.

I had a small bone to pick with the whole thing in part because it completely plays off of the vanity of Facebook. Like, do we really have to dump buckets of ice water on our heads to donate to charity? Why can't we just donate to charity? In private? Without telling people?

On another note, while we're talking charities and causes, there are millions of people in the world who are without clean water, and here we all are dumping it on our heads wasting it. Depending how you feel about that, you could easily be upset over that aspect.

Then last night, our local Orange Leaf store issued the challenge to my workplace. This morning we had a quick meeting about when and where we should do this, how we could try and get other employees to join in. And then I found myself researching what ALS is and watching a very emotional video of a 26-year-old man who was diagnosed with ALS. And he was talking about it and how much it scares him because it runs in his family, and then you see him taking care of his mother who is in, what I would guess to be, the late stages of the disease. It was heartbreaking.

I get it now. If I (via my workplace) had not been issued this challenge, I would never have done my research to find out what ALS is. And I never would have donated either. Yeah, I've heard of "Lou Gehrig's Disease" but I didn't actually know what it was. These videos are talking points, they're "fun", and the exact thing that I did is the entire point: to get people talking and educating themselves about it, and in turn hopefully donating towards it.

The skeptic in me still wonders if everyone who does this is really making a donation, or if they are just making the silly video and moving on. Or maybe they intend to, but the next day they forget about it and never do? But clearly it's effective, as donations keep climbing to numbers the ALSA has never seen before.

And you know, if the CF Foundation ever comes out with a campaign that goes viral and raises a ton of money, I will rejoice at that. CF affects nearly 30,000 people in the USA, and it is estimated there are 30,000 people in the USA with ALS. So we're kind of on the same level as far as how common the diseases are and, I would imagine, how much funding and attention they receive. But for now, I'm happy for the ALS community that their cause is getting the attention they hoped for. I donate to yours, you donate to mine, eh? :)

An Open Letter

Dear Evergreen,
the arborvitae bush in front of my house,

I hope you are feeling okay. You can blame my naiveté about bushes and plants in general for the fact that I didn't realize why you were turning brown, slowly dying.

Like a misdiagnosed illness, I thought you were simply dehydrated. But after a close encounter this morning and some quick googling, I found that was not the case. No, instead you have been infested with bag worms all summer, and I am truly sorry I didn't realize it until just now.

Please know that the 45 minutes I spent out there, sweat pouring down my face, picking off every single bag worm-pod I could find, were done with love. By the time I was done, my hands that were in the rubber gloves were so damp I had prune fingers. But while picking off your potential killers, I also discovered that the damage is much greater than I had realized.

I promise to keep a better eye on your for the rest of the season, and will come back for another round of de-worming if needed. I hope this will help and I hope that you can hold on just a little longer until the first hard frost when, hopefully, these buggers will meet their end (at least for this year.) Please don't die.

Yours truly,
Me

Friday Fast 5

1. Let me get this out there first, because I promise the rest of this post will be positive. About Ferguson... I posted some thoughts on Facebook after Wednesday night's craziness, and I realize now that I fell into the trap of judging quickly and that I was wrong about some of my points. And I admit that. But after the information that was released today about the robbery, I am done. I'm quitting Twitter for a while because people are getting stupid and it is ticking me off. No one is even listening to the facts any more, they are all just taking bits and pieces of the story and making their own assumptions from there. So I'm done. 
2. I was feeling kind of down tonight. And tired. And bored. And I really didn't feel like going to church for the holy day, but at the same time I knew that's what I needed to do. It helped, like deep down I knew it would.
3. Also, during the sign of peace, the man behind us shook my dad's hand and then my hand and instead of saying "Peace be with you" he said "God bless you." Not like a sneeze, but he really said it like he meant it. I've never seen this man in church before, I don't know if he was a visitor, but it was nice. It made me feel better, it really did. So if you ever feel so bold to try it, say that instead when you're shaking hands during the sign of peace. It might mean a lot to someone.
4. I dropped off three prayer shawls the other day at church! That brings my grand total to eight shawls made, plus I have four more in the works right now. I'm a busy-crocheting-bee ;)
5. I'm so excited that my favorite local Mexican restaurant El Ranchito is now smoke-free! This place was completely ideal to go smoke-free because the division between smoking and non- was really just an invisible line. I went there the other night with my mother-in-law and Jarrod's sister and it was as delicious as I remember! I was not let down. 

Death of a Genie

No one could have guessed that the next tragic celebrity death we'd be dealing with would be that of Robin Williams. My social media feeds have been so full of things about Robin Williams, be it simple signs of memorial with people standing on desks, quotes from favorite movies, or articles about him, that I'm almost getting tired of it. Maybe you are too, and even if you aren't I'm going to try to keep this as concise as I can.

I think there are two reasons the world is so shocked about his death. One, being that he provided so much happiness and laughter for others, and two being the reason of his passing. It is unnerving and hard to fathom that someone seemingly so passionate and joyful, who could bring so much laughter to the world, was in fact so isolated and joyless.

Many took to Twitter to post their thoughts, and many of them simply said there were no words to describe how they felt. But one very popular tweet has me unsettled and I think I finally figured out why.

The Academy tweeted out this last night:

As you can see, it's been retweeted and favorited many times. Some have called it the 'perfect' way to pay tribute, or memorialize, or whatever it is you're trying to achieve. 

At first glance, it seemed kind of nice. After about 3 seconds it seemed kind of... off. 

In case you're a little fuzzy on the ending of Aladdin, in the Disney Aladdin movie, Aladdin uses his final wish to set the genie free. It's a semi-emotional scene with the genie being taken aback that he would do such a selfless thing, and Aladdin declares again that is his intent with "Genie, you're free." Some magic happens, the genie rises up, his cuffs of enslavement to the lamp are broken away, and he is free.

It's a joyous occasion.

Suicide... is not a joyous occasion. 

The image could also imply that suicide is a solution to freeing yourself of your demons or your pain. I don't think that's the message you'd want to send to someone dealing with depression and suicidal thoughts. 

There is a much better, more proper way, to handle this, and that would have been with another quote that follows immediately after the scene where Aladdin frees the genie:

Yes we will, Aladdin, yes we will.