Tiny Update

As a tiny update to yesterday's small update, I heard from my doctor yesterday. And the plan, for now, is to finish my course of steroids and sit tight. Basically, kind of wait and see what happens.

I see about 3 possible scenarios on how this could turn out:

1. I continue to improve a little even after tomorrow, when my steroids run out, and am able to get exercising back to the levels I was at pre-cold. (This is what I'm hoping for)
2. I finish the steroids and slide back, then we'll discuss a new plan or hospitalization.
3. I finish the steroids and maintain where I'm at as of today, no better, no worse.

In other news, my friend pointed out to me last night something like So thankful your hospital is not in St. Louis anymore. Yeah, no kidding, me too. I will reserve comment on the Ferguson stuff, maybe I'll let it out in another post, except for this one thing: It really bothered me when protesters shut down I-44 at Grand last night. That is the exit to get to SLU and Cardinal Glennon, both of which are fairly major hospitals in STL. 

I did a little shopping today for a couple items at Target and JCPenney. At JCP, all of the merchandise is perfectly displayed, everything is folded and stacked, and the whole store is looking quite sharp. There were hardly any people there, since I assume at this point most everyone is waiting until Friday (or Thursday, those family-hating shoppers!) to get the best deals. Once I used the 20% off coupon I had, the piece of clothing I got for Jarrod was 2 dollars cheaper than their "Black Friday Price". For the sake of my sanity, I will gladly pay two more dollars. Target was similar, with everything stocked as much as the shelves can hold, just waiting for holiday buyers to arrive in a few days. It was a little odd... like the calm before the storm, at Penney's especially. I'd love to see someone in retail do like a Tumblr of before/after photos from Black Friday. Because before, it looks quite nice, but I'm sure after only an hour or two, it is all completely trashed.

Small Updates

Good news first!

Good News—I'm doing the better. The prednisone is helping. It's not a home run outta the park or anything, but I have improved a little. I'm not nearly as breathless as before, so this is a good sign. As a refresher course: prednisone is a common steroid, and steroids are used to reduce swelling and inflammation. Ergo, my airways aren't quite as inflamed as they were and getting around has been easier.

Bad News—At this moment, I have no idea what this means for me. Does it mean I make it through this week and go in the hospital next week? Does it mean we try something and put off a hospital stay longer? No clue. I'm trying to call and check in with my doctor and give them a status update, like they wanted me to, so we can figure this out. I'm a little anxious over it, to be honest.

In other news, I started decorating for Christmas over the weekend. It's not something I have ever done before Thanksgiving, but not knowing where this whole maybe-going-in-the-hospital thing would leave me, I decided it would be best to just start on it. Trust me, I'm not putting the tree up or a manger yet, but I put up some garland and most of my snowmen yesterday. If I do go in to the hospital at any point between now and Christmas, it would be about 2 weeks of lost time for shopping or decorating. Plus, Jarrod wouldn't know where I'd want all my snowmen to go anyways, but he can still put up the tree and the manger in my absence, if needed.

But the other exciting thing is we got our treadmill out of our front room and downstairs where it will have it's new home in the "bonus room." It is so wonderful to have that space back, the house feels little less like we're still in a construction zone now. It is so much more open now that the treadmill is gone. I'm sure Josie will be excited to have more room to play ball too! This also means we WILL be able to put up a Christmas tree this year. We didn't last year because the treadmill was taking up too much room, which I talked about here. But I am glad we can put up the big tree, hassle that it is, and enjoy it.

And Now for Some... Sad News

It's a Dan Anchorman reference...

Well... I wish this could be a cheerier blog post, and I'll just cut to the chase: I'm going to be back in the hospital very soon. (And I just got the idea that I totally need to bring my Animaniacs DVD sets with me! Why have I never thought of this before?)

So remember that cold I had 5 weeks ago? I never really got much better from it. I mean, I did get 'better' but I did not get back to baseline, and in the past week I've slowly gotten worse.

Actually, the moment I realized I was most definitely getting worse was last Saturday. I went out with some friends for dinner (Jarrod was away hunting) and after dinner, I was suddenly very short of breath. During the drive home, I realized that I just needed to stay in for the rest of the night, and what I really needed was my oxygen tank. So Jeff & Johanna dropped me off back at home and I stayed in, did a treatment, and sat around with my oxygen for a little while. I started to feel better, but not by much.

Then this past Tuesday, I tried to return to the gym. I've been to the gym a few times just to walk on the treadmill, and I treadmill here too, but I have not lifted weights since I got sick. Tuesday I thought I was feeling up to it and was ready to return. I figured I might not be able to lift as much because, wow, [I realize in writing this that] it was 5 weeks ago I got this cold; that is a long time to go without going to the gym. But... Tuesday didn't go so hot. I only tried two machines and ended up having coughing fits both times. I gave up and told Jarrod I was going home... I cried in the car. I was so disappointed that I had made such good progress with gaining strength and a little bit of muscle, and right now I can't even maintain it. And I'm most likely going to lose most or all of it, and have to start all over.

Today I was scheduled for a PFT, and after those incidents, plus basically needing my O2 every night, I wasn't expecting things to go very well. Turns out my numbers are down to about where I was when I went in the hospital in September. We're going to try some steroids for a few days and see if I show any improvement with that. If not... I don't know what is going to happen. At this point, I don't know if they'll let me wait until after Thanksgiving, or if I'll be enjoying a hospital-turkey-dinner on Thursday.

So yes, I'm very sad that I only made it two months out of the hospital. However, circumstances were completely out of my control, and this is the exact reason why we have to be extra diligent, be so careful that I don't get sick: because it throws me in the hospital.

But, if I'm completely honest, I'm not all that surprised by this news today and I am also ready to feel better. It is a real struggle getting around, especially in the evenings like I said. It's like by the time the day is done, my body is so worn out that it stops functioning properly, and just walking across the house makes me winded. My house is a disaster because I haven't felt up to cleaning anything for weeks and now I feel even worse. It's hard to even get dressed sometimes, without getting short of breath.

So, let's hope that the steroids help and I can at least stay out of the hospital next week.

The TV Situation

Jarrod and I have been tossing about the idea of dumping our satellite TV for a while now; almost to the point where some may be asking 'Why don't you just get it OVER with already!?'

Well, we have finally made a decision on our TV situation. And...

We are going to officially "cut the cord" and no longer have TV on December 1st.

We did a two-week trial of living without TV, which started four-ish weeks ago. The rules were:

• you can only watch local channels (as it would be if we had an antenna)
• you can't record anything to the DVR
• you can't pause the TV
• but you can watch things already on the DVR, which would be like a streaming service

The first week was a little difficult, for me at least. Jarrod would have ditched satellite a long time ago if it was up to him. But I knew part of it was just a mental thing, really. Since I knew I still had the channels there, I just couldn't watch them, it was playing games with my brain; you always want what you can't have—just like really wanting a big hamburger on Fridays during Lent. But by week two, I had gotten used to barely watching local channels, watching a lot more Netflix, and kind of forgot all those other channels were even there. And I didn't care. 

Our satellite auto-billed, so with this month already being paid for, I'm not going to try to cancel mid-month and argue with them to refund me my money. Plus, this way we get a little more time to watch a few things stored on the DVR and time for Jarrod to build an antenna. 

We will be canceling in 11 days. And hopefully we'll never look back. 

I honestly doubt we will. While we "didn't have TV" I would watch things on Netflix. And the things I was watching were shows or movies I actually wanted to watch, instead of just whatever was on the channels. Because the sad truth is that, even though I could hypothetically do this anyways, while still keeping my satellite, the satellite is like the default. It just becomes habit: When I turn on the TV, I turn on the satellite and try to find something to watch. I usually just watch something, even if it's not that great, because it's right there and it's what's in front of me. Without that option, I immediately turn to Netflix instead, where I have all kinds of things queued up that interest me. On top of that, I swear that ever since we made this decision, more often there is nothing on TV that I even want to watch. And I end up turning it off anyways. Why am I paying for this?

I've found out that more people our age have this kind of setup than I originally thought. And it's common with my generation: no TV, just watch online. With the announcements of HBO and CBS creating their own streaming services, I think more channels are going to follow suit and the traditional definition of TV is going to change fairly soon. That's not to say television as we know it is dead, because there are still many reasons for some people to keep their cable, like watching live sports games, lacking a good internet connection, or just preferring the convenience of it.

But as more and more people like us "cut the cord" the networks are going to be scrambling for that lost advertising money and it's going to be exactly like the newspapers—which also means that it is going to take them a long time to figure out a workable model for this.

Somewhere back in the early 2000s, newspapers started to realize 'Hey, we're losing print subscribers, everyone's online, but they don't pay for what they read online... why are we giving away all of our news for free?' And then around 2010-2011 you started to see paywalls popping up. I predict a near-identical outcome for the big TV companies. The difference is that the networks can at least place ad-rolls on the videos, and those aren't that different from having commercials during shows in the traditional sense. For newspapers, an online ad is not a print ad and never will be a print ad, and online ad revenue rarely makes up for lost print ad revenue. But I predict that in the future, most every cable channel will either come up with their own streaming service, place everything behind a paywall in some form—either a "hard paywall" where you pay for all or nothing or what is called a "soft paywall" or a "pay screen" (like a screen door) where you get some episodes free, after that you have to pay—or they are going to place even more ads on the videos. 

On a random note: Hey remember YouTube before it had ads? Oh... those were the days...

So why are we doing all this? Well, for a few reasons:

• To save money—Even if we signed up for both Hulu Plus and Amazon Prime for streaming more movies and shows, we still save about $400-500 a year. We can put that towards things we'd enjoy way more than our crappy TV channels we barely even watch.
• To spend time in other ways—For me, I hope that I will spend less time in front of the screen and more time doing other things I enjoy, like reading or crocheting. Or once we move the treadmill downstairs, I can play the piano again. 
• Less frustration—I've touched on this one before, but TV really frustrates me in 2 ways. 
• 1. It is really frustrating to look through all of your 100+ channels and see that there is NOTHING on there that sounds remotely appealing. Now I won't have that problem. Yes, I expect there will be times I can't find anything on Netflix either, but so far I have not had that problem. If anything, I've had the opposite of having too many things that I can't keep up.
• 2. The stupidity of TV, in commercials and in shows. Almost any new reality show that has been introduced in the past 3 years is a regurgitation of some other kind of show. For example: Deadliest Catch was almost 10 years ago, and there have been a ton of other 'obscure careers that you didn't know were fascinating until now' shows. And then, of course, in 2012 we hit the bottom of the barrel with Honey Boo Boo. Because sadly, America likes to watch train wrecks. With the exception of Swamp People, haha, I just can't bring myself to watch this stuff. It just doesn't interest me in the least. So now I don't even need to worry about it, I won't even know it exists, so I won't have anything to be frustrated about. And as far as commercials, Netflix and Prime don't even have them, and Hulu only plays a fraction of the ads you deal with normally. 

So it's se la vie to TV in less than two weeks! If you're interested in switching to the dark side with us, feel free to message me. We did a lot of research while making this decision, I'd be happy to share what we found out.

Friday Fast 5

1. We should all enjoy this weekend because after that, the cold officially sets in. I'm not excited for it so soon, but I'm not surprised. I really don't know why anyone should be surprised; we had one of the mildest summers in a long time, of course the cold weather is going to happen even sooner because of that. Looks like deer season might actually be cold, unlike the past couple years where it was too warm.
2. I wish there were stricter laws for "mature drivers". In our state, you have to renew your license every 6 years, and if you're over the age of 70, it's every 3. To that I say: woo hoo... who cares? What needs to happen, I feel, is that they need to retake the actual driving test (there are states that require this, ours is not one of them.) Eyesight and being able to read signs are not the only components of driving; slow reflexes, not to mention having just the mental capability to think quickly, go completely unaccounted for. The reason I'm complaining about this is today, this old lady almost caused an accident with me three times! THREE TIMES, with JUST ME! First she pulled out in front of me at the stoplight (making a right onto Hwy. 100 while I was turning left from Hwy. 47; she pulled out so late that I almost ran in to her), then she signaled to get in the left lane and merged without looking, then I changed lanes and was trying to pass her and she just drifted back over (no blinker) into the right lane and almost sideswiped me again. I was blaring my horn at her for that last one, and I don't think she even noticed. This lady should NOT be on the road. Beware the turquoise Chevy Equinox with the white-haired lady in it! I know giving up your license can be difficult for older citizens, emotionally, but for the safety of others sometimes it just needs to happen. There are some who do it willingly, like my great grandpa I believe, and my grandma limits herself to short drives only during daylight hours, but there are many who don't.
3. I got some Starbucks today—which I haven't done in a LONG time. I think their prices went up... luckily I had a gift card. Wow, no wonder people can go broke getting a coffee drink every single day at over $4 a pop. Anyways, it was 470 calories of yum in a cup!
4. Speaking of high calories, my weight's been holding steady! I was worried I'd drop back a few pounds with that cold. Eating is not very enjoyable with a cold; nothing tastes right because you can't smell, milk sounds gross when you're all snotty and coughing, it's really hard to keep your appetite up. But looks like I survived, which is very reassuring.
5. I've started to see people putting up their Christmas trees. I really don't get that one... part of the 'specialness' of it is that it is up for a limited time. Less limited=less special. But that's just me. Am I weird?

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.