Yopp!

Tonight me, Jarrod, and my mom and dad went to The Muny to see Seussical.

When The Muny announced their 2014 season earlier this year, I was excited to see this show in the lineup. However, I saw it was at the end of July, which meant it would probably be miserably hot so I didn't want to buy tickets until later, maybe even day of, waiting to see how the weather was. We have had some incredible weather, turns out, and tonight was no exception. I meticulously picked which show we would go see based on the forecast on Monday. I think it barely reached 82 today, was cloudy most of the day, with low low humidity. It was an AWESOME night to spend outside!

Seussical is a show near and dear to my heart for many reasons. First of all, it was my last high school theater show. Our school always did a play in the fall, a smaller play during the winter, and a musical in the spring. Throughout my high school theater career, I was in every show in some manner in tech or on stage, but in reality I only was on stage in the musical my Freshman year (and the second time, when we took that show to the State Conference) and my Senior year.

When I was a Freshman, we did Schoolhouse Rock, which was fantastically fun. It is a play full of all of those educational songs I knew from my childhood, which would air promptly at 10:57 am right before Looney Tunes at 11 am on Saturday morning cartoons (don't get me started on how much better those cartoons were than the ones kids are stuck with these days!) I was part of the ensemble and also had my own song as the "Figure Eight" girl.

Senior year we did Seussical, which is also a super fun show. If you're unfamiliar with it, it is many, many Dr. Seuss stories squashed into one musical. And I really mean that... I've discovered more and more stories that are in there since then, even if it's just for one line. It's quite impressive, the writing that went into it. I was cast as Jojo, the boy who thinks too many thinks in Whoville. Yes, I was a boy. I fooled some people, too, into thinking I was a boy (the bonus part is my name could be either a girl or a boy's name, so just reading my name in the program didn't give away my gender either! [best joke on the audience ever.])

Tonight's production also had me excited because it starred John Tartaglia as the Cat in the Hat. I saw him on Broadway in the original cast of Avenue Q back in 2008, and he was so good. Plus he's been on Sesame Street often, and we all know I have a soft spot for anything Sesame Street or Muppets-related.

He didn't disappoint and was superb as the Cat. He worked in so many original little jokes too, about Oprah, about Lindbergh, about The Muny. But the show overall was so much fun, they did a really great job.

I picked out some great seats too because, turns out, they were right underneath the fans. It's been a while since I've been to The Muny, but they replaced the fans there! The new ones don't make any noise like the olds ones did, so these can stay on the entire time. So not only was it cool air, we also had a steady breeze. We had no one sitting beside us, we were on an aisle, no one was in the row directly in front of us, but unfortunately we had a couple noisy ten-year-olds behind us.

They started out being cute. Before the show and during intermission, they were making me almost laugh. During intermission they were talking about time travel, almost word for word: "...It would have to be two times the speed of light! In theory it takes the same amount of energy to go into the future as it does to go in to the past, but in reality it takes more energy to go into the future." Do you remember the nerd kid from Boy Meets World, I think his name was Stewart? That is exactly how this one kid talked. Unfortunately, these two would not shut up even during the show, and the mom gave up trying to quiet them after Act 1. It would have been easier to overlook if they weren't ten, but they were well of the age to know how to act in a theater. So that was unfortunate, because they really ruined some moments of the show that were heartfelt.

But, it was still a great show. It brought back so many memories, and it was really, really hard not to sing along (Jarrod jokingly left open his page of the program that went over theater etiquette, and one of the points said Please do not sing along with the show. Haha!)

Hat's off!

PS—The "Yopp" title is a special word Jojo thinks up to save the Whos. It's a very big moment in the show, and I got to yell that word! It's fun.

It's an Uplifting Day

Well, I am on the mend. The meds have started to kick in, I've got my med-induced nausea under control now, and I haven't felt as short of breath. So far, so good. Hopefully they continue to improve me!

I've been napping a lot lately, partly to give my body rest, and also because the meds do make me more fatigued.

Today's weather is downright out-of-this-world: it is the middle of July and it's only 70 degrees. The windows are open, I'm wearing long sleeves, and I'm actually cold. It's been a great day; listened to classical music while the birds chirped this morning, the dog snoozed on her pillow next to me while I worked, cool breeze wafting through the house, coffee brewed... sigh... it was uplifting and good for the soul.

In this wonderful gift this morning, I also realized that God has granted me with another gift: work hasn't been that busy the past couple days. Which means, less stress and more getting-better.

Here's hoping for another wonderful day tomorrow!

It was a Good Run

Well, my friends, my 7 months of super duper health have ended—it had to happen sometime. I have somehow developed an exhaustive cough and shortness of breath. I guess all my lung germs got together to have a party after all the electronic music I've been listening to. I haven't been able to keep my oxygen sats up either, I'm hovering around 90, 92 tops. So, it's time for some antibiotics and some steroids.

But hey, it was a good run! Seven months of no meds is amazing for me, I'm thankful for it.

This all started on Monday, but really worsened yesterday. Sleep has been hard to come by, I have a dishwasher full of clean dishes, for two days now, and new dirty dishes piling up halfway across my entire kitchen, but I just haven't even felt up to putting them all away. Therefore, I also haven't felt up to cooking much because my afternoons have been spent napping (or trying to) to catch up on lost sleep. But, I just did an albuterol neb, so after I finish typing this, I'm going to go take care of those dishes while I feel best. Then walk on the treadmill.

The hard part about all this is, honestly, I kind of forgot just how sucky it feels to be sick. I suppose that's a good problem to have. I haven't caught a cold in forever and I'm sure whenever I catch one I'll say the same thing to myself "Dang, I forgot how awful colds can be." Anyways, in line with that, it is also harder to work out. Gosh it was so much easier when I felt up to it and could breathe. However, I need to get over it because it will help me in the long run, or else I will for sure feel even worse, plus I will be back to square one on the amount of muscle and tolerance I've been able to build up.

So say a prayer that these meds kick in quickly, that they take care of this little blip, and that I can get back on my feet decently enough this weekend to go to the gym with Jarrod and Jeff on Sunday. I figure if I can push off a hospital visit for even a couple more months, that'll be great.

The Fault In Our Stars

I just finished the book The Fault In Our Stars last week, which is sweeping the teen world by storm. It's a young adult novel by this John Green, and it sounds like ALL of his books are sweeping the teen world by storm. Teen super fans of his call themselves "Nerdfighters" and they are obsessed.

The book is about a girl and a boy who meet at a cancer support group. The girl has lung cancer, the boy had cancer that made him lose his leg. They like each other, and the story goes on from there. You can probably guess how most of it goes, quite frankly.

I became interested in the book once I started hearing about the movie buzz. The movie version just
came out a couple weeks ago. With images of a girl walking around with oxygen tubes in her nose, I figured 'Hey, I can relate to that. I'll read about a character with lung problems.'

The book was good, though nothing too ground-breaking. I only cried once, and supposedly this book makes everyone cry multiple times. Honestly, I feel this has something to do with the fact that a lot of what she talked about—dealing with hospitals, PICC lines, and oxygen concentrators—is quite familiar to me, whereas I assume a 'normal' teen might find it totally-oh my gosh-that's so awful-heartbreaking, whereas my internal thought is a flippant "Yeah... that sucks."

However, I do think one thing the book has going for it is a no-BS approach to disease. The girl herself is written as very witty, wise beyond her years (a little too wise, actually), and intolerant of bullshit cheesiness. I have a hunch his other books are written in the same voice, and I also suspect that's why teens are loving them to death. Since the book is written from her perspective, she lays it on the line as to how she feels and what things are like. I think that is helpful, and it in no way covers up the hardships of cancer or dealing with your lungs failing you.

So for that, I'm thankful for this book. I'm also glad this book/movie has taken off with teens like it has because maybe, once I start wearing oxygen full-time in future, I won't get stared at so often and it won't seem so out of place for a young-looking person to wear oxygen 'nubbins' in their nose. Granted, I don't have lung cancer like Hazel does, but still.

The characterization in the book is what disappoints me. It is very typical in teen fiction to have an extremely witty (not just smart but really witty) character. In this case, there were 2 or 3 witty teen characters, and their wisecracks and never-ending philosophical takes on the world get a little old. No one, in real life, is like that. I felt the same way about the movie Easy A; it's a good movie, but every single character was funny and witty. Teens like to think of themselves as quick-witted, I remember that, but in reality hardly any of them actually are. However, I realize that a book about boring ol' characters is also, well, boring.

The Results Are In

I began my day with some of the most wonderful news today.

I was doing my treatments, checking my phone for anything new, as I usually do. I was almost caught up on my Twitter feed when I saw this Tweet:

On here, I have mentioned that they are making great advances in medicines for treating CF at the genetic level; fixing the defective protein, the cause of CF within the gene. I mean how amazing is that? 

So today they announced that the results of a clinical trial are in. This trial studied people with two copies of a certain gene mutation and found that the drug showed "significant improvement in lung function" and other symptoms (like weight gain) and therefore, with these results, the drug company will be submitting a New Drug Application to the FDA by the end of this year, with hopes of drug approval in 2015!

I had tears of joy. See, I don't have the exact gene combo for this trial or this drug as it is right now, but I wholeheartedly believe that very soon (as in 3-6 years) it will be available and proven useful for someone like me. We are SO CLOSE to getting the closest thing I can to a cure! So close! If I get to start taking this drug, it won't completely remove all of my lung problems, they have suffered some damage and scarring that is irreversible. But to know that someday, there's even a chance that my disease could be genetically "fixed", and life could actually improve a little? That's... Amazing. 

There is another clinical trial in the works right now (Phase 2) that is studying use and effectiveness of this med in people with 1 or 2 copies of the gene mutation, and that's the one I'm anxious to hear about. 

But this is fantastic, blessed, stupendous, wonderful news that could be life-changing for half of the CF population. I'm elated for so many CFers who will have their lives changed by this. 

There are a couple other drugs being developed that have me almost as excited too. One of them is an inhaled version of an antibiotic I take when I'm in the hospital. If it is ever approved, it could reduce my hospital stays and significantly help me too. All great news, all the more reasons to keep donating to the CF Foundation because they put almost all of their funding into drug development. 

In other news, I'm still kicking my CF's ass at the moment :). I started doing more at the gym and I'm approaching 7 months out of the hospital, AND without antibiotics! The last time that happened was when I was, like, 10? 

If you'd like to read more about the cilinical trial, go to cff.org and it's on their home page. 

Latest Project!

I had a new crochet project recently! In addition to the shawls, I made a couple dishcloths for myself and they are wonderful.

The idea had never occurred to me until I was reading a label or something about the cotton yarn I was using for a shawl. It said something like "Your #1 cotton yarn for dishcloths, ..." So I taught myself a new stitch to make them strong and with less gaps between the stitches, and voila: cloths! I really wanted to give it a shot because I don't know about you, but a lot of my dish cloths aren't as absorbent or good at wiping things up as I'd like them to be. My ones from Target and my cheapy microfiber ones just smear water and anything on my counters rather than doing a good job of soaking it up and wiping it up like a paper towel might.

But these do not have that issue! They wipe up like a charm and also hold a lot of water—when Jarrod wrung one out yesterday... yeah, that was a lot of water in that little thing! The only thing I haven't tried yet is washing it in the washing machine. I haven't decided if I'd put it in the dryer or just lay flat to dry. I'd probably just lay it flat, it is 100% cotton after all.

You can use them as wash cloths for your face, they're quite soft, or dish cloths in the kitchen. Right now, I've got mine in the kitchen. If anyone else is interested, I'd love to make some for you! They're super easy and take little time. The yarn comes in a LOT of colors and mixes (like the blue/purple/navy one) so anyways, seriously, if you're intrigued like I was, send me an email or comment here!

Friday Fast Five

Happy Friday everyone!

1. Today I get to do one of my favorite things: Photoshop paint colors into a room! I'm thinking of doing something a bit different on the ceiling colors, but I want to Photoshop it in first to see how it'll look. Maybe I'll post the final image once I'm done.
2. I finished choosing my paint colors. Jarrod's relieved, I'm excited.
3. Jarrod is cleaning up the basement now. It's super dusty, and he's vacuuming it all up. I think we've been able to contain most of the dust downstairs, but our house smells like drywall mud. I think it's affected me a little bit, I have a bit more of a cough this morning. But it's not too terrible.
4. Pippa Middleton and her brother James came through our town on Wednesday, in that bike race I've been talking about. It was pretty cool, because she is on an 8-person team, and only one person has to be riding at a time. So there was a 1 in 8 shot it would be her, and it actually was! A local TV station's story made it onto USAToday's page (probably because they're both owned by Gannett), and it's a pretty decent piece. You can check it out here.
5. We watched Gravity this week, and it was much better than I expected. And I wasn't expecting much, every preview I saw made it look so boring! I rented it because of the special effects and technical stuff; they won many Oscars for those categories, and I kept hearing about how they revolutionized the film industry with the way they filmed the movie... or something like that. Anyways, technically it was very, very impressive. I have no idea how they shot the thing, because they are weightless the entire time. But the story wasn't that bad; like I said, much more interesting than I expected, even though it's only two actors (George Clooney and Sandra Bullock.)

Meeting People from All Over the World

Today I worked the time station with my dad for the Race Across America (RAAM). I didn't know what to expect or what I'd be doing, really. What it turned out to be was a bit of standing/sitting around, talking to the other people there while waiting for crews and riders to arrive. Then when we got to do our 'job', our 'job' consisted of basically being a CSR: get them water, Gatorade, soda, snacks, direct them where they need to go, etc. It was fun, and I'm sure I'll try to do it again next year because the people you encounter are what make it interesting. I've always admired and been fascinated with people who just up and take a cross country tour, or backpack across Europe, always thought it would be so cool to see the normality and beauty of a place like that. Recently, we had a monk walk through town on his Peace Walk. He started on the west coast, I believe, and is making his way across the country. Just walking, all day, hoping to show the world that it's really not that bad. I think that's awesome and I applaud the beautiful people who have the ability and guts to do these kinds of things.

Today I talked to and met people from Germany, Italy, Croatia, Australia, and Great Britain. How cool is that? And we weren't that busy, most of the people doing RAAM will be coming through on Wednesday and Thursday. Surprisingly, the people from Britain were the hardest to understand. I think it's because they talk so quickly, and even though it's English, it's heavy with an accent, and therefore hard to catch everything they say. The other Europeans spoke slower, trying to form their thoughts in English so they could communicate what they needed to. Basically, I found myself saying "ya" (or "ja") a lot.

So a quick rundown of how this works so my further stories will make sense: There is the cyclist, riding the race, and his crew. All of these people are in need of food, water, a shower, a break, sleep, or just to stand up for a while. Most of what we dealt with today were crew members.

There were two Germans there for a long time, and they were part of a guy's own media crew. One of them was walking around with his camera for a while, snapping photos here and there, and I asked him if he wanted to take my photo. He did, and I was able to use a tiny bit of my German from high school (even if it was only "Ich bin Jamie") but still, it made him chuckle and smile. He said "You speak Deutsch?" I said "A little, two years of classes in high school."

The Croatia team made me laugh the most; the crew pulled in, we greeted them, asking what they need. He said "No... no water, we haf food... we need... uh... ice cream!" Paradise is just within walking distance, so we pointed it out. "No, no... rider he is... very... delicate tastes... we need... this." And at "this" he pulled out a wrapper from a Blue Bunny Double Chocolate ice cream bar. Ha! So we pointed him to Schnucks, the grocery store, where he would surely find those.

Even though only two actual riders stopped by while I was there, it was neat. The first rider was from Great Britain, and he had a green mohawk. He had multiple tattoos full of maps and writing of his various races he's done before. This is him in the photo from the Facebook page. 

The other guy was Croatian and he seemed so happy to be there. Most time stations are a whole bunch of nothing, a gas station on the side of the road maybe. So coming by the one we have here, full of people, food, drinks, and a pool, is a welcome relief. Go world!

Duck on the dashboard of the crew van.
Love it.

Friday Fast Five

Five quick things for Friday!

1. I had my port flushed yesterday. I almost forgot about it because... well, usually by now I'd have been in the hospital again and wouldn't need it—so it's a good problem to have! I get it flushed about every 2-3 months (the past two times have been three-month spans, that's about as long as I care to stretch it.) And it went great! My 12-year-old port is holding strong. Bonus: It didn't hurt either, the lady must have not hit any of the scar tissue that's there. So woo hoo!
2. Two days ago, my mom and I went to the outlet mall for the first time (the good one) and it is pretty nice. I got some clothes from Loft with some birthday money, got birthday presents for my nephew from the Disney Store, and bought myself a snack. Loft is my favorite clothing store (with Kohls in a close second) because they have a great petites section; finding clothes that is petite AND young is wonderful. Their sizing is also very consistent, something that many stores lack. The Disney Store was a pleasant surprise, I thought they closed all those! Maybe they closed in the malls, and just made more "outlet" stores. Anyways, our nephew loves Mickey Mouse Clubhouse so I wanted to check it out. Then I got a snack from Wetzel's Pretzels. I love soft pretzels, always have, and these were some of the worst I've ever had. Save yourself the money ('cause they aren't cheap) and don't buy any if you go to the outlet. They had absolutely zero flavor, nothing even close to Auntie Anne's. I'm eating some of my leftovers right now, and even after adding some cheese to dip in, they still don't taste that good. I was almost on the verge of demanding a refund, I was so disappointed. 
3. I watched Frozen this week and it was fantastic. I really liked Olaf, he was perfectly performed and written. He was cute and hilarious, but not in the typical over-the-top kind of way. Plus, who couldn't love a snowman who likes warm hugs and the "idea" of summer? I can see why girls AND boys are loving this movie, it has something for everyone including adults—it's kind of like the Aladdin of my day. It was a refreshing throwback to the princess movies of old; it was pure, classic Disney. Not Pixar, but Disney. The animation was beautiful too. When she's building her ice castle? Wow, it was incredible.
4. Our priest is having his final mass this weekend, and while I'm sad he is leaving, I'm really looking forward to the next priest. I don't know why, but I am just feeling good about the change.
5. My dad and I are going to work the local time station for the Race Across America next week for a few hours. RAAM is a cross-country, 3000-mile race that brings cyclists from all over the world traveling the country through towns just like mine. Some ride solo, some in teams, but they all start in southern California and bike all the way to Maryland. These are not pros, like the Tour de France, but just ordinary people who love cycling. I have no idea how you would train for something like this, but the race happens every year. I'm kind of excited. The Duchess of Cambridge's sister Pippa Middleton is riding in it, though I doubt I'll check in her time because she is riding with a team, and the teams aren't expected at our station during the time slot I signed up for. I'm kind of excited for it! A lot of these teams ride for charity, I wish I had a great CF shirt I could wear to promote conversation about CFF too.

No TV

For a while now, Jarrod and I have bounced around the idea of "cutting the cord" and getting rid of our TV service (maybe I've written about it on here too, I can't remember.)

I already have Netflix, so I'm already paying for that one, and if we added Hulu Plus and Amazon Prime, all three of those services would be half the price (or even less) of what we are paying annually for satellite TV. We would want a Roku to stream it all with, because the apps on the TV suck and even the BluRay player can be iffy sometimes—who knew we could have SO many options yet all of them suck?

Being methodical like I am, plus I love making lists, I made a list of all of the TV shows that we tend to watch and then looked to see if they would be available online or through one of those services. In almost all cases, the answer is yes. Mad Men is the one show that is not available online, and that's an AMC thing (if Halt and Catch Fire turns out to be good, we will have the same issue there.) But I think the episodes are released for purchase the following day and again, that would still be cheaper than what we pay now.

Fortunately for us, we don't follow many shows. Mad Men, Breaking Bad when it was on, Halt(...), maybe The Americans, and I like to watch Frontline and NOVA on PBS. Jarrod prefers to watch movies over TV shows, so that's easy.

Thursday the drywall guys started working on our basement, and Jarrod had to move all of his equipment downstairs so they could drywall around it. So Thursday was an interesting day of no TV and no internet. Luckily, my parents lent me their internet during my workday so I could still work here from home.

After they were done drywalling that area, Jarrod hooked up the internet and some sound that evening. But no TV yet. Not because he couldn't, but because I said it wasn't imperative that he did.

So this is officially day 3 of no TV and I gotta say... it's not that bad. I find myself occasionally getting bored, but then I usually find something else to do. Something much more productive too, I might add. We've hooked up my old N64 and have been playing that a bit, we've been watching stuff on Netflix, or just listening to music.

One benefit I didn't think about or foresee: The TV is not annoying me. I can't get annoyed over stupid, irksome TV commercials, or roll my eyes at the latest dumb reality show, or get upset because out of the HUNDREDS of channels we have I can't find anything I want to watch.

It's feeling a little less complicated, being without the TV.

Now, if we ever do truly cut the cord, we won't be completely TV-free. I still want an antenna for the local channels, mostly for news and weather. And yes, I will miss my DVR. But then again, I'd be able to pull up a lot of things that I'd want to watch anyways, so it won't really be all that different.

So we'll see. We might end our satellite TV sooner than we thought.