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.
Saturday, September 27, 2014
Friday, September 26, 2014
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.
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.
Wednesday, September 17, 2014
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.
Friday, September 5, 2014
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.
Monday, September 1, 2014
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.
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.
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.
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