It's That Time Again

Yes, it's that time again, where I take a few moments to complain about the now-commonplace

acceptance that the Christmas season immediately follows Halloween. And every time I enter a retail store for the rest of the year, I will let out a sigh of disappointment at the displays.

Christmas has been encroaching on August more and more for years now, but it is now accepted that every store—from the local mom and pop's to the national chains—will have everything Christmas starting on November 1. Which is just more proof that if you do something enough and repeat the mantra enough times, people will just roll over and come to accept it as normal.

As early as Halloween night, stores have cleared their shelves and moved in Christmas candy, those feel-good mug gift sets that no one really asks for, and all-things-Santa and no-things-Jesus. It is ironic, as someone stated, that Christmas has been turned into the most materialistic holiday ever, when it is about the birth of the most un-materialistic man to ever walk the earth.

So once again, I'm going to hold out and not buy anything Christmas until it's after Thanksgiving.

Poor Thanksgiving, no one cares about you anymore. No one wants to be thankful.

I think I'm finally turning the corner and starting to feel better, after well over a week of ridiculous amounts of coughing, low oxygen, and having a hard time falling asleep. I started a higher dose of meds Friday, and I really think that is helping. I came up with a good analogy to explain why it's so hard for me to fall asleep, in case anyone was confused by that. So, it's like a bottle of molasses. And when you tip the molasses over and lay it down, it starts to slowly shift place. That's what happens to me, laying down and the shifting of mucus tickles all of the little airways and thus: coughing galore! Oh yay.

I had milestone on Saturday... I had to wear my oxygen out in public for the first time. I've worn it around family and friends, but never before have I needed it out in public, around other people. We had a funeral to go to Saturday morning, our friend's father passed away, and that morning my sats were 90% so I felt it a good idea to bring a tank along. I wore it in the car ride there, and tried going without it for a time to see how I felt. It was more comfortable with it on, and I didn't feel I had to work as hard to just breathe normally. So... I toted my oxygen tank, strapped over my shoulder, into church. I know I received a few stares, a few eyes lingered on me more than usual. I understand, people are curious—What in the world does that normal-looking young woman need oxygen for? But honestly, it went quite well.

Still Coughing, Marginally Better

My cold is moving along, I suppose, but quite slowly. It's interesting how the symptoms come in phases, but when I try to remember how I felt yesterday, it all runs together. 

It started, as you know, with never-ending coughing. That went on for 2ish days, then there was the 'rattly gross cough' phase, then the 'more drainage' phase, then the past days have been 'more coughing with constant agitation in my airways' phase. Last night I was up until 2am when I finally calmed down enough to fall asleep. And today is less cough, since it all happened last night, but my nose is getting stuffy again.

Needless to say I am weak. I'm tired due to exhaustion. But I can't get much rest, because when I do lay down, it makes me cough. And I'm not really feeling all that much better than I did 3 days ago. I'm just feeling different sorts of sucky-ness.

However, my Josie has been cheering me up. For the past few days, she seems concerned and has been staying close near by me. So having her for my buddy has helped my mood, at least.

Napping with me in the recliner.

Thoughts on Ebola

The Ebola Microbe,
an adorable collection
of stuffed animals
shaped like microscopic
organisms.
Great gag gifts.

Ebola. The virus inciting fear in America. I can't keep track of the numbers, but a lot of people have died from it in Africa, one guy died in the USA, a few Americans were cured and survived to tell the tale, a few are currently in treatment, and a handful are being "monitored" or whatever the hell that means.

The yelly news media's coverage of Ebola is displaying everything I loathe about the news these days.

For one thing, they won't shut up about it. It's everywhere in the national news, and I'm sure it's on everyone's local stations too, I'm sure we are not an isolated case of reporting. Every single night, local news programs, who really don't have ANYTHING to worry about at this point, dedicate at least 5 minutes (1/6th of their program, remember) to talking about Ebola. Last week, KSDK had to have a segment to talk about the paranoia and fear about Ebola... that was caused due to the fact that they won't stop talking about Ebola! Does no one else see the relationship here? Cause and effect? Anyone?

Then last Friday, with the announcement of a person in NYC testing positive for ebola (which was bound to happen, it's NYC) the Today Show called in "experts" to talk about it. They started their report about what the man did the previous day, which included riding the Subway and going bowling. Then they talked to an actual doctor who said "Well, you can't catch Ebola until someone is showing symptoms." Which completely discounts everything they were just talking about, that were all things he did before he got sick! Today the conversation turned to a nurse who was quarantined because she 'might' be infected. One politician says it was unreasonable, one politician says it was completely justified. Oh waaaaa. Personally I think she's just whining and needs to get over it. But it brings me to my next point: Why in the world are they interviewing politicians about ebola? Why aren't they talking to, I don't know, doctors? And ONLY doctors? Or people in the medical field?

The news has successfully turned everyone into a bunch of whiney ebola-fear-ers. The proof was in the pudding last week as I was in Columbia for my checkup, when a lady got in the elevator. Myself and a nurse were already in there, and the lady proceeded to ask the nurse "Are you guys prepared for Ebola?" We are in for an interesting flu season, my friends. Since Ebola starts out with a fever—the same way a flu usually does—I predict many people are going to flip their shit and rush to the ER claiming they have Ebola. You just watch.

Vox has circulated the following graphic many times since the panic started:

vox.com

Calm down people. You don't have Ebola.

David Brooks wrote an interesting opinion piece about why Ebola is scaring everyone to death, and he argues that it is our culture's evasion of dealing with death itself. I feel that if the media actually aimed to inform and educate the masses, instead of trying to keep them gobbling up their news like Cookie Monster eating cookies, this might have turned out differently. For now, I'm done with the news. I am going to avoid it like the plague for a while. Or, rather, avoid it like it's Ebola...

There you have it, everything I hate about the news: non-stop coverage every day, inciting fear, discounting facts, and the public ignoring the facts even when presented with them. Gah!

John Stewart at The Daily Show summed it up quite nicely in this brilliant piece. Click here to view it.

PS—My favorite Microbe is the MRSA guy. He's the "superbug" so he wears a superhero cape, haha. Come on, you gotta laugh. Plus he's kind of cute.

I Wish They Made Vick's for Lungs

Oh my lungs... my poor lungs...

I have a cold. It came on hard and fast on Thursday, at 2:00 pm exactly. I started coughing at 2:00 and from that point on, until midnight, I didn't stop. I finally took the right combination of stuff and/or calmed down enough to get some sleep from about 12:30-5:00am, and since then it's been most of the same. I have so much throat drainage that it is causing me to continually cough. Ergo, my airways are so irritated and raw; the poor things just can't catch a break. It's not nearly as bad as last year, when I developed that mysterious cough out of nowhere and landed in the hospital at 1am, but it's still not pleasant. 

I went to the doctor's today to confirm what I had, because it could have been a sinus infection. I had my doctor here in town consult with my doc from the CF clinic, which was a good decision on my part I will say. I had never seen this doctor in the group before so she doesn't know anything about me. Furthermore, I felt she was blowing me off a little bit, not taking me too seriously, but maybe that's just her way. I just wanted to impart on her that this was NOT my normal CF stuff going on and that this was serious, we needed to do something about it quick before it throws me in the hospital. 

So it's time for the usual two weeks of oral antibiotics. I really hope I can kick this. Last time I got sick, I was able to come out of it just fine and stay on track for a while.

I guess you could say it is a blessing in disguise that this happened on a Friday. I have the entire weekend to rest and not worry about work or much else. 

My Flu Shot PSA

I'm writing what I hope to make my Annual Public Service Announcement on the Flu Shot.

I was inspired to write this, in part, due to a blog post like it from another CFer. What she wrote was so awesomely thought-out, I will do my best to not write an exact replica. So here goes...

In a week, we'll be into mid-October, which is the perfect time to get your flu shot. There is a time when it could be considered 'too early' because the antibodies you make can wear off after some time. So you want to get your shot around this time because we aren't that far away from or in to flu season, and we aren't so far away from it that come February, you would be less immune due to your super early shot.

No one likes being poked in the arm. I get it. I don't either. I have always gotten the flu shot for my entire life because I have to. My parents have too. Jarrod never did until well into our relationship, but now every year we go down to Walgreens so he can get one.

Maybe you don't feel like you need the shot, maybe you have a decent immune system. But I'm going to bet that you know someone who has a lesser immune system and cannot afford to become sick; someone who is pregnant, or is under 5 years old, or is elderly, or has cancer, or has asthma, or has an autoimmune disease, or has had a transplant, or has a compromised immune system... and sometimes, you might not even know it. See, for people like us the flu is not some thing where we catch it, get some Tamiflu, take a couple days off work, and then we're good to go. The flu is a BIG flippin' deal, and could potentially send us into the hospital for a few days, or more depending on the person.

You might be thinking 'Well, if YOU get the shot, and if I catch the flu, why do I still need the shot? You already got one, so we're good.' Wrong. Yes, I get the flu shot, but it has been studied and it is unknown as to how effective it is due to the immune system being compromised, therefore less capable of building up the antibodies needed to create my own personal flu shield.

Getting a shot may be a personal decision, but the spread of germs is not. Germs do not discriminate between old or young, healthy or sick. Germs spread everywhere, especially during "cold and flu season" when we're all cooped up with each other. So if you decide not to get vaccinated this year, you should realize that viruses like the flu take a day or so to even show symptoms, meaning you could unknowingly pass them on to everyone you know. But most of all, please realize that your health choices impact more than just you and your immediate household.

Whether you get the flu shot or not, you should also realize that you NEED to stay home if you're sick—no excuses like 'Well I have to work' or 'It's Thanksgiving, I haven't seen everyone in a while.' For the sake of everyone else, take one for the team, and stay home. Trust me, anyone who can identify with the list above will thank you later.

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.