The Driveway

This morning was kind of a big deal. It snowed an inch or two, and it was the perfect day to stay in and bake cupcakes (or brew beer, if you're Jarrod.)

So Jarrod made us breakfast and then went downstairs to brew. In the meantime I did my treatment as normal, but I was having a pretty good morning, I wasn't coughing a ton... 

So I had a crazy idea... I decided I was going to try to shovel the snow off the driveway. And I did! I shoveled the driveway! I've never done that since we moved here. I had to take one break, to come inside and sit with my oxygen on for about 5-10 minutes, then I went back out and finished. I was getting pretty worn out during the last half, and audibly reminded myself "You can do this... There's just a little bit left." And then I was done and I came inside to sit with my oxygen hose on again while my heart slowed down and my oxygen sats. came back up. 

I went down to tell Jarrod, since he had no idea, and he was surprised! And very happy for me. I am so damn proud of myself, I can't even tell you. I feel like I've had a slight grin on my face all day. Take that, CF! 

I did that! 

Friday Fast 5+5

It's been so long since I've blogged, I'm going to have TEN things this time!

1. I have barely been on my laptop, so I realize I never caught you all up regarding my recent hospital stay (and to the people I need to email back, I will get to it soon I promise :). I'm DONE, I finished my meds at home on the 31st, and am feeling really good. Actually, I had the best PFT I've had in years! The last time I had numbers this high was in 2011! I was able to achieve a 38% FEV1, which is just crazy. I can't stress how awesome and important this is. Now, I just hope to keep it up.
2. I felt the power of prayers this time, I must say. I started out with very, very resistant bacteria as stated in my previous blog. But midway through the course of treatment, the results came back with my cultures and showed my bugs had become more tolerant, and lo and behold they were responsive to the drugs we chose to use! I also have to really hand it to the parishes of Columbia. I was visited by a priest twice, who administered a blessing, a deacon, and volunteers who brought me communion. All told, I was there for ten days, and for probably 6 of those days someone came by my room to pray and bring me communion. Really great.
3. I've finally started reading the Lord of the Rings trilogy. I really like the movies, and the story. I'm really excited to read it and it's keeping my interest.
4. Once again, I have really struggled with a Lenten resolution this year. I think part of it is that I feel like I should do something new and different year to year, but I've pretty much run out of ideas. Honestly, last night I still hadn't come up with anything—I know, Lent started on Wednesday! Augh! But this morning, I decided. It'll help give me some needed inspiration day-to-day. 
5. I started a new prayer shawl the other day with a new, fancy stitch! I'm very excited. Jeff & Johanna gave me a book for Christmas with 500 crochet stitches in it! So I'm trying a new stitch from the book, and it's turning out quite nice.
6. I've complained on here before about the TV news just perpetuating fear, and the other day was proof again of what I've been saying. CBS This Morning had a report about the zika virus, and it was titled Zika at Mardi Gras. They sent a reporter down to New Orleans to talk all about the zika virus and the mosquitoes. The report went on and on for about 5 minutes, then at the very end he said "Now, officials say that they're not concerned about mosquitoes at Mardi Gras because it's simply too cold. But the threat of the zika virus will continue as the year goes on." So basically the report was about absolutely NOTHING because it's not even a concern anyways. But it might be. At some point in time. Everybody stay scared!
7. I've often thought Josie looks very fox-like. I looked it up, and contrary to popular consensus, dogs are split in two groups: those related to wolves and those related to foxes. Josie is definitely from the fox category. Just look at her!? 

   

   Josie shows her good side to the camera, haha.

8. Does anyone else forget to drink your coffee in the morning, haha? Almost every morning, I pour myself my cup of coffee, take two sips of it, then I forget about it. And then it's cold, and I reheat it, and forget about it again. 
9. I feel like our tolerance for snow here is going down, likely it's caused by the TV weather people, and we're all drinking the Kool-Aid, including myself. I'd love to watch a weather broadcast from the 90s or 80s, and see what they said then. Because now, even the mention of snow in Missouri sends schools canceling classes sometimes. Many people freak out over 1 inch of snow. But I don't feel this was always the case. Snow-freaking-out-ness is definitely relative and dependent on where you live. If you live more north, it takes a great amount of snow for things to shut down, if you live more south it takes a dusting to freak everyone out. We've always been in the middle with snow totals, but it's still expected that it will snow a few times a year here. Why are we all such wimps about it now?
10. With our recent snow, I've had a TON of birds on my deck and coming by the feeder. I assume it's harder to find food when snow blankets the ground, so I've been happy to give them some easy-to-find bird seeds :).

The March No One's Hearing About

There is safety in numbers. Unions, peer pressure, protests, petitions for change, revolutions, victims of rape from a celebrity figure all gain momentum because of this idea. Whether you agree with the cause or not is irrelevant, I think we can all acknowledge that numbers and mass support for a specific cause are the reasons things succeed and change happens, and lack of it is the reason things fail. 

I hate to be this way, but the media bias has never been more clear to me than it is as I'm typing this, their plan laid out in full view. 

In recent years, it seems we have become obsessed with reporting on extreme weather, so this week has proven a nice little frenzy for the news stations to continually talk about. With the impending snow storm heading for Washington, D.C. tomorrow, I am stunned that there has been no mention of the March for Life which will be taking place right in the middle of the blizzard on the national mall. Coverage of the March for Life has been practically nonexistent in recent years anyways, but I thought surely there would be some sort of mention due to the extreme weather situation the marchers will find themselves in. 

Nope. I was wrong. How silly of me. 

I can guarantee that if the marchers in D.C. would be marching—or buzz word of the year "protesting"—for Black Lives Matter, or income equality, or transgender rights, or whatever liberal cause-of-the-day it is, there would be TONS of news coverage. It would sound like this:

News desk: And now we're going to go to Sarah, who is live in Washington, D.C. with the protesters and some of the awful conditions they are starting to see there. Sarah?

Sarah: Yes Todd, I'm here on the national mall and it is getting cold here. Protesters have started to huddle together for warmth and protection from this absolutely brutal wind we're getting. They are bracing themselves for below zero temps and blizzard conditions and they have shelters and medical stations set up nearby in the event anyone needs to get warm. Simply terrible to think about what they will be going through in the coming hours. But they're not letting it get their spirits down. --cut to pre-recorded interviews with random people--

Random man: You know, it's not exactly what we were hoping for, it's a bit of a damper on things, but we're not letting it get us down. We have a right to be here and we will continue on as planned because we know that our message needs to be heard. 

Random woman: This weather isn't going to stop us, no way. The whole reason we are here is <insert cause here> and we will keep on marching come rain, snow, ice, fire, whatever!

Sarah: As you heard, the protesters are in high spirits even though they face an unprecedented storm. Forecasters have upped their totals to over two feet of snow now. But that's not going to stop them, and we'll stay here to bring you the latest as the storm intensifies. Reporting for NBC, I'm Sarah Smith. 

But no. Those interviews are not happening because the select few at the helm of deciding what is reported on in the mainstream media have deemed this unworthy of their time. 

In doing so, they alienate the pro-life movement. Deliberately. If no one is hearing about the hundreds of thousands of people who believe in being pro-life, then how can anyone know there is such a cause to believe in? Young people who may be on the fence about the issue are left to think that NO ONE is fighting to end abortion, save for the few who stand outside clinics and the occasional politician, and might as well join the pro-choice crowd because, well, they don't feel like there is much of a pro-life movement left to join. Surely if there was, they'd hear about it, right? But this is the media's agenda: report on what you like and want people to believe in, don't report on what you don't. No wonder more and more young people identify with democratic causes, they're not even hearing the alternative argument.

It is unnerving to me to think that if a march of hundreds of thousands of people is getting little to no coverage in the media, what else are they not reporting on? I hate to sound like a right-wing nut job conspiracy theorist, but seriously. Whether you agree or disagree, just look at the fact that that many people are gathering in our nation's capital to fight for a cause; it is ludicrous to think that it would go completely ignored. 

Hospital Time, Next Week

Well, the time has come. After 7 months, my out-of-hospital stint will run out. The plan is to go into the hospital next Monday, unless I get sicker and then I'll go in sooner.

I talked to Donna today and she let me know the results of my sputum culture. Not the worst, but not very good either. I'm almost completely resistant with one strain of bacteria, except I have an intermittent sensitivity to one drug. And it's a penicillin, which I'm allergic to, so that means desensitization again. We used this med last time, and it worked, though I had some side effects, which means I'll be staying there the full two weeks instead of doing some meds at home. The other strain of bacteria had two options, which still isn't great, but at least I'm not allergic to any of those. The silver lining in all this is no staph, so at least we don't have to worry about that right now.

My bugs are constantly battling it out down in my lungs for space. Pseudomonas is known as the chameleon, according to my doctor, because it constantly shifts in drug sensitivities and such. Right now I have a lot of pseudomonas, which means that potentially the pseudomonas knocked out the staph so they could take over and rule the kingdom that is Jamie's Airways. Who knows. 

My growing trend over the past year is more resistance, which does concern me a little, but I'm not letting myself dwell on it. Every single culture is different, which makes it confusing, but ergo: chameleon. I've had three consecutive cultures come back now that are mostly resistant, which isn't cool. More than anything, though, this just reinforces the importance of exercise and my treatments. If I can keep my lungs clear for longer, than that will prevent the bugs from ganging up. If there is less gunk for them to populate and grow in, then that's all the better for me. 

I'm hoping we can make some progress in this hospital stay, I have to have faith that we will, even though our drug options are limited. I really need your prayers, though. I'd love to turn this resistance train around, but it's out of my control.

Shared Videos

As I was scrolling through my Facebook feed earlier, I came across a video. You know the kind, the sweet, emotional tear-jerkers that someone originally posts, and then others share them over and over and over, possibly going "viral."

There have been many debates, especially regarding adults of my generation, about 'living in the moment.' As in Put your phone down, dummy, and enjoy this moment before it passes. A few months back, there was an article about people at a parade. Every single person (really, every one of them) was holding their phone up to take a photo or video as the parade came down the road. Everyone except for this one little old lady, who was smiling and actually watching the parade. I can say I'm guilty of this occasionally, though not nearly as much as some.

Thanks to our readily available smart phones, we've turned into a culture that wants to document EVERYTHING. And in some ways, this is arguably a good thing. Children born these days will have way more photos of their growth and development as they get older than any generation before. I take photos of my dog all the time. Do I need to take that many? No, but it makes me happy to look at them sometimes when I'm down.

On one hand, this doesn't seem all that far off from days gone by when a designated family member held the camera, looked through the lens, and took our pictures. I don't think I would have said they "weren't living in the moment" by being the family photographer for the day. But somehow it does seem a bit more extreme now, doesn't it? Way more narcissistic, when you add in the element of posting it online. I know some people who seemingly can't have a family get-together without taking multiple candid and posed photos. It's not like they're crazy people, they're just obsessed with holding onto those moments, capturing them for all time. Funny though, I think it's safe to say that never before have we taken so many photos, but had so few physical photos to show for it. For all these photos we've taken, we sure don't print out many of them. (Hey, remember the days of photo albums? That you actually flipped through, like, with your hands, haha?)

I certainly understand wanting to preserve memories. I'm nostalgic for the past, love looking at old black and white photos, and am a bit of a pack-rat when it comes to being sentimental about things. But I also believe that some moments should simply be enjoyed between the people in the room. There is something beautiful about that. Not everything needs to be documented, and beyond that not everything needs to be shared for everyone to see.

I should make a point here to say that I find a big difference between 'sharing things with only your friends' and 'sharing things publicly online.' I still don't feel everything needs to be posted, but I really don't understand the people who share things for the entire world to see—literally.

So as I was scrolling through my Facebook, there was a video of an old lady. She had just been given a very special gift. Her husband had passed away, and she was given a pillow that was made of an old shirt of his, so she can always "have his shoulder to lean on" or something along those lines.

Grandma was crying, obviously. It was a sweet moment, but this is just one of probably hundreds of videos now that I almost wish I didn't see. It feels awkward. I don't know these people, yet I'm somehow peering into this very special, very intimate moment in their lives. I almost feel bad for the grandma, that one of her family members is shoving a cell phone in her space like a television reporter so they can record every second of her reaction.

There was just something about it, the invasion of privacy, that led me to write all this. I think we could all use a moment to re-examine how we view our world via our phones. Take pictures, sure, but keep them to yourself and your loved ones. You don't have to invite the world into your living room.

Just Some Thoughts & Tidbits

I hope I'm not upsetting anyone over what I'm about to say, because I loved seeing all of my family members, but I am very glad that Christmas is over. We have so many Christmas celebrations to attend and by Saturday, I was downright exhausted. And not, like, normal-person exhausted, but CF-related-running-myself-into-the-ground-I'm-going-to-get-sick-if-I-don't-stop exhausted. I slept or laid around practically all day on Saturday, but it wasn't enough. I'm finally feeling a bit more up to snuff today, but wow I was running low on gas.

But Christmas was great. It was really nice visiting with everyone, especially my cousin Megan from the Watson side, who I haven't seen in ages. We have a tendency of missing each other at family get-togethers, either I'm there or she's there but we're rarely both there. So that was nice, and it was great meeting her boyfriend.

Saturday was a ruff day, pun intended. Friday night was when all of this rain started, and it all began with a whole bunch of thunderstorms. Josie's storm anxiety has gotten worse, and I was up for a while trying to deal with her. It's hard, and a long story, but we have tried about everything we're supposed to do but it doesn't seem to help a whole lot. I have a couple ideas for our next steps, but yeah. Off and on Saturday there was thunder and lightning, so she was stressed out pretty much all day. Poor thing.

But it's back to real life now. I have to work all week except for New Year's Day, which is typical. Though I'm pretty sure if the newspaper said We're foregoing our usual Weekend Edition due to the holiday (for Christmas, too), I doubt anyone would mind. But that would be blasphemous; the news must go on!

Jarrod started his week off by having to replace our garage door opener. Fun fun fun... He determined it was unfixable and we needed a new one. It started acting up Christmas Eve, he took the dog out Christmas morning to find the door had actually only half shut and been half open all night long. But at least the new one has a keypad, which is something we kind of missed from the Wentzville house.

As you may recall, he also replaced our garbage disposal last month, and next month we'll probably be needing a new hot water heater. So we're pretty tired of things breaking around here. It's all hitting about the same time, isn't that always the way?

In better news, I have been out of the hospital for 6 months! Woo hoo. However, I am on an antibiotic right now. I started it last week because I was coughing more and more, especially waking up at night. I don't think I had two-consecutive nights where I didn't wake up coughing in well over two months, so I was pretty darn tired of it. I'm hoping this gives me a small 'boost' and I can continue my stay out of the hospital. I can't say I'm feeling a ton better at the moment, but I'm hoping it'll help.

It's funny, though, because CF is such a huge roller coaster ride. I completely acknowledge that I am only prolonging the inevitable. I still think it's a good choice, because as I've said before, the less I need IV antibiotics the better. The more time that I can stay away from antibiotics in general, the better it will be for me and the less resistance I will have to these meds. But still, eventually I will go back in, which would be the lowest point of the roller coaster, and then I will go back up a sharp hill quickly, stay on top for a little while, then slowly descend over months and months until my little roller coaster car comes to the bottom of another hill. And then it's back up again!

15 Books in 2015

I continued my book reading challenge this year, and upped the ante by one. And I even reached my goal in November! I plan to keep on track with matching how many books I read with what year it is, and am planning to read 16 books next year. I'm not sure when I'll reach my threshold, when it'll be too many books, but so far I haven't had too much trouble reaching my goals. It's one small thing in my life where I actually set a goal and attain it.

Without further ado, here were the books I read in 2015 and a few thoughts on each:

Born to Bark—The big reason I read this book is because it's about a cairn terrier, and it was a joyful story about a feisty little dog.

Everything Is Illuminated—I liked the movie, but I had a hard time getting into this book. The main reason was the writing style, which was very different and full of run on sentences, conversations, and paragraphs. The style did not help the story, it hindered it. Would not recommend, but if you're up for a quirky movie, check that out.

Memoirs of a Geisha—This one was good, it's really interesting to read about the geisha culture from long ago. The story is fiction but based very much in history.

Batman: The Dark Knight Returns—This book was supposed to be the créme de créme of graphic novels, along with Watchmen (which I loved), but I found this one hard to follow due to the extremes in illustration.

The Martian—When I finished this book I said "It'd make for a good movie", and little did I know they already were filming it (Matt Damon wouldn't have been my first choice for the character.) This book is Apollo 13 meets Castaway. Really good modern sci-fi.

The Rosie Project—Not sure what I expected from this one, but it didn't really wow me like it did for many other people. A guy creates a test to find the perfect woman for him, you can probably guess how the rest goes. Intriguing characters, an easy read, but not mind-blowing.

A Dog's Purpose—I continued my guilty pleasure for dog books with this one, and it did not disappoint. I cried multiple times and really enjoyed it. This book is about multiple dogs, and the ending is really satisfying.

Alice's Adventures In Wonderland—Some find this book delightful, I couldn't stand it. I've never been a big fan of the Disney movie, I don't know why I thought this might be any better. It's just SO darn weird.

The Girl On the Train—This was one of 2015's 'hot books' for the year, but I wasn't overly impressed. The story wasn't bad, but it was very dark. The main character was hard to sympathize with, and that's a big deal for me. If I don't find myself caring about the main character, then I don't really care what happens to them, ergo I'm not really hooked into the story.

I, Toto—This was a quick little read about the dog who played Toto, and it was cute and short. Kind of like the dog, haha.

To Kill A Mockingbird—I read this back in high school and wanted to re-read it now as an adult. The book still holds up, and some of the themes had more relevance now than they did back then. This one is a good one to revisit.

The Nightingale—I really enjoyed this one. It's about women living in France during WWII. Not much is written about all of the women who had to stay home while their husbands went away to war, so this was a great story about a different perspective of the war. It made me think.

Merchants of Doubt—This non-fiction book details how companies and organizations through the years have worked to sew doubt when scientists try to say their product/what they're doing is wrong. Example: big tobacco campaigning to prove second-hand smoke isn't bad, or politicians saying global warming can't be true. It was ironic that I started this book the same week Coca-Cola was caught paying scientists to say that sugar doesn't make you fat, diet doesn't matter, it's exercising that matters. It was quite the eye-opener, and I now see these scenarios playing out all the time. Highly recommend if you want to understand how big corporations and big government work these days.

Room—It's been a while since I've had a book grip me like Room did. A good suspenseful, interesting book that should make for a good movie.

City on Fire—Officially the longest book I've ever read at 944 pages. The story was kind of intriguing, taking place in 1970s NYC, which was a bleak time in the city's history. But it could have been cut down 200-300 pages easily, and made for a better, more refined novel. By the end, it was a bit of a bummer to realize I'd just wasted so much time reading this enormous book that I only found "intriguing." Read at your own risk, it's a long haul.

Friday Fast 5

1. Today was a cold but sunny day, so it's not so bad. The piggies were out and about at Todd Geisert Farms when I stopped by to get us some bacon. It made me smile watching them trot around and play in the field.
2. Jarrod and I went to the Star Wars opening last night. We were very, very excited; it's not every day that there is a new Star Wars movie. We decided to head to the theater about 40 minutes ahead of time, and good thing we did. The theater was probably about 80% full already! It was a relief that we ended up with good seats, and by 'good seats' I mean that we weren't sitting by any crying children, we weren't by anyone talking, we weren't by any obnoxious teens. Thank goodness. We both really liked it, I loved BB-8, and I'll leave it at that. Spoilers are easy to come by these days, and I am not going to add to that problem. 
3. Due to the movie, I have also had the Imperial March (the Darth Vader song) pop in my head multiple times a day all week long. It's getting a bit old...
4. I've got all my Christmas shopping done, and I am very glad for that. And, I accomplished at least three-fourths of it online. The last thing I want to do is go out shopping this final weekend before Christmas. No thanks.
5. Yesterday, I had errands to run and my final one was shopping at Aldi. I got there and realized I forgot my bags, then realized my quarter for a cart wasn't in my car—I usually keep one in the cup-holders for this purpose. I dug through my purse but didn't find one there either. I was disappointed, and resigned myself to the fact that I would have to grab two things I absolutely needed and could carry, and come back another time to get the rest. I got out of my car, and this older man said "Do you need a cart?" I said sure, and he pushed it my way and said "Merry Christmas!" and I replied "Thank you sir." It just really, really made my day. The prospect of having to return to the same store a day later... sigh... not fun. I tried to pass on the goodwill when I was finished, but there wasn't anyone going in the store at that time needing a cart. So maybe next time.

Going Solo at the Movies

I was having a bit of a rainy day too, Charlie Brown.

Today I did something I've always wanted to do: go to a movie by myself.

I have been excited for The Peanuts Movie ever since I heard they were making it. And once I saw some of the first promo images for it, I was even more so. Half of the reason I love animated movies so much, aside from being young at heart, is because of the animation and the creativity. And the style they used for this movie made me smile, it just looked so darn cute and perfect for taking a flat cartoon to a 3D animated movie.

The movie came out a while ago, we never got around to seeing it, and I would check movie times almost every week to see if it was still there. Well, today was the last day before our local movie theater retired it to move on to a new film, so it was my last chance. The showtimes were 1:30 or 4:30, and the later time is cutting into dinnertime and when Jarrod would come home, so 1:30 or nothing.

After I ended up having a pretty crappy day at work, I decided I was definitely going to the 1:30 show right after my work day ended.

Not only did I go by myself, I was also the only person seeing the movie today. I think there were maybe 5 people there total, seeing other movies, based on the amount of cars in the lot. I had the entire theater to myself, which I find quite nice. This happened to Jarrod, myself, and Jeff once before when we saw Muppets Most Wanted. You can laugh as loud as you want, chat a little bit if you choose, and simply chill out like you were at home on your own couch.

I'm so glad I went. The movie was very cute, sweet, and had a story with heart. I laughed, I shed a couple tears, and it was exactly what I needed this afternoon. I walked out with a smile on my face.

1 Year Without Satellite TV

It's been one year since we cancelled our satellite TV. We have our local channels over the air via antenna, but that's it.

We don't miss it. At all.

I wrote all about it last year when we decided this was something we were going to do. We cancelled TV with the hopes of saving money, spending time in other ways, and to have less frustration. A year later I can say we have accomplished all of those things. Yes, we still watch things on our streaming services and all, but we have a much easier time just turning off the TV when we're not finding anything appealing to watch.

I also feel I have so much less aggravation now that I don't have cable channels. As I wrote about last year, I find the dirge of crappy shows the networks churn out aggravating. I don't want to watch them, I don't want to support them, and personally I feel better not putting our hard-earned dollars toward networks who create such shows. This year I also stopped watching the local TV news, and I am much happier for it as I've mentioned on here a few times. And I'm sure the not-so-noticeable blood pressure spikes and biological symptoms of anger and stress that came with all of that were not good for me.

I've had occasions, like when I'm in the hospital, where I have cable again and each time I have the same reaction: Wow, I am really NOT missing anything. I realize some people love their television, and if you're a sports person this would never work, but for me I feel getting rid of cable has been freeing for all the reasons I just listed. I'm so glad we finally took the plunge, and as always, if you're thinking of taking the plunge too, I'm more than willing to talk to you about it.