Small Update: Done with Meds

I finished my IV meds on Tuesday night. Thank goodness! I went for a checkup last week, and my doctor felt it best to continue for a third week. It was not exactly what I wanted to do, but I understood the reasoning behind it and it did make sense. But still, not exactly fun. It's so nice to get back to normal life. I'm back to work, which I'm actually very glad about. It gets boring, not working. The days start to run together, filled with TV shows, movies, games, a few productive bursts, but a very loose structure. It's also nice to be able to have caffeine again; I really started to miss my coffee variety. I could drink decaf, but here at our house we keep about 2-4 coffees on hand at one time so we can rotate what we make. Only being able to drink one decaf flavor got boring. I can also enjoy a soda while dining out if I'd like to, and it doesn't have to be Sprite. And I can enjoy a beer again! Or wine!

An easier stay

I'm back home from the hospital already! Actually, I came home this past Friday.

Fortunately, this time the bacteria in my lungs came back sensitive to drugs that I was not allergic to, which elicited a huge WOOOOO from me when I heard that news. God I was glad to avoid the ICU this time. Since I'm not allergic to them, and therefore less likely to have any issues arise, Jarrod and I are much more comfortable with me coming home sooner than I would have other times when I usually stay at the hospital for a week, then do the remaining week at home.

So I came home Friday. Jarrod came and picked me up after work, then we had to decide where to grab dinner. Ah, non-hospital food again... I chose Panda Express, and that was a huge—excuse me, 'yuge—mistake. It was the longest wait we have ever had at a Panda Express, Jarrod stood in line for over 30 minutes. Turns out it was a school fundraiser night, and there were many people inside ordering food to take home (why they didn't just go thru the drive-thru, I have no idea.) Anyways, we finally got done there and got home around 8:30.

Since then things have been going fine, but it is still a jam-packed day fitting everything in that I need to do. I have to keep myself in check before time slips away since I have to run my IV meds for about 1.5-2 hours at 6am, 2pm, and 10pm, do four 30-minute treatments, plus eat, plus walk on the treadmill for 30 minutes... it's a lot. And that is why I no longer even try to work while doing all this. The focus needs to be on me getting better, and it would be nearly impossible to keep up with all of that and add work on top of it.

I think I'm finally turning a corner, it seems to take about a week before I really start to notice big changes. I started feeling a bit better as early as last Thursday, but it wasn't dramatic. Today I am feeling a very noticeable difference. I'm coughing less and my shortness of breath is improving, which was the big issue I was having prior to doing this.

Time again

It's time for a hospital stay for me. I'm not doing the best right now. Actually let me rephrase: my lungs are in a terrible state right now. My numbers are the lowest they've been in a long time. I am out of breath frequently, and the crazy part is it has actually improved a little since mid-December. But it's still bad. But walking across my house, depending how quickly I walk, can leave me gasping for air.

My brother-in-law gets married this weekend, so I've been trying to hold out for that. But I can't hold out any longer. I will be going in immediately after.

Here's hoping it's a fairly typical stay, with no surprises or huge issues.

Turtles

As far back as I can remember, I have always liked turtles. I'm not sure why, I can't explain it. And if the Buddhists' version of creation is correct, I was probably a turtle in a previous life.

But now I've realized just how perfect it is for me to love turtles.

In July, I had a nurse while I was in the hospital named Mihiri. She was originally from Sri Lanka. I had her as my day nurse for 5 days, so we got to know each other. I thought she was quite funny, and she was a good nurse. I think she enjoyed me as a patient too, because after the first couple days we would usually chat a little bit when she had to come in my room. She appreciated me being so involved in my care and asking questions. One day when my doctor was in the hall after just leaving my room, I remembered something. I called out there, she was still there, and told her a prescription we forgot to discuss. Mihiri commented, to my doctor, "Isn't she good? I love it, I love how she is not afraid to speak up and be involved." My doctor agreed, and said it was unfortunately rare.

So every time I go in the hospital, I take my stuffed animal turtle Bernie. He's the perfect size and shape that he feels like hugging a little pillow. I've had Bernie for... a long time. I can't remember what year it was, but it was the first time I had to be hospitalized at Cardinal Glennon. We had just switched doctors, because our insurance would no longer cover Children's Hospital, so I was a bit down about being in a new place with new doctors (new everyone, really) and on top of that I was sick enough to go in the hospital. The gift shop, at the time, was a tiny room on the way to the cafeteria. Mom, dad, and me went down there to get some food and I commented how cute that turtle was high on a shelf in the window.

Well, sometime later, my parents surprised me with a gift bag... they had bought me that turtle in the window. I named him Bernie and he's been my "hospital buddy" ever since.

Mihiri really liked my turtle, which I usually keep at the foot of my bed during the day; he fits perfectly down there and is out of the way. She was commenting about it and was saying "No, I'm serious. I really think I want to get one for my daughter." Her daughter, she had told me the day before, had graduated college and lived in Maryland. "It would be a nice little gift, just a little something different. A nice reminder 'Slow and steady.'" she said.

I can't get those words out of my head.

What a perfect motto for my life's journey with CF. When I get sick, it's a serious thing, and it's a long, slow battle back to health. Exercising... another great example. On Monday, I had a really hard time walking on the treadmill. It was discouraging. Tuesday was a little better, but I was really huffing and puffing trying to walk at a good 2.7 mph speed. Then yesterday: bam! I could walk 3.0 mph and I was NOT totally beat by the end of it. Slow and steady...

This is also kind of topical as the Olympics were this year. No athlete who went there magically became good at their sport overnight, or quickly. It took years and years of slow progress to get to where they are.

I'm dealt with setbacks all the time. It is SO hard to see the big picture sometimes and see that yes, I'm doing better than I was 3 years ago, and that that's a good thing to focus on. But I have to stick with my treatments, I have to exercise, there are no shortcuts for any of this. Because sure enough, slowly and steadily, I can continue to improve or at the very least maintain my health. I saw the best lung function numbers I've seen in years back in February. I could reach that again sometime.

Slow and steady...

Bernie.

16 Books in 2016

I was able to continue my theme of reading the number of books to match the year this year, and I play to set a goal of reading 17 books for next year! I even surpassed my goal this year, way back in the beginning of October. Recently, I've been slowly re-reading the Harry Potter books, and at this point I'm not going to finish all 7 this year. We've had so much else going on that I've barely had much time to sit and read.

But, without further ado, I give you my small reviews of my books in 2016:

Batman: The Killing Joke — Hailed as one of the essential stories in Batman and Joker lore, this graphic novel had great artwork and a great origin story to boot.

Modern Romance — I started listening to audiobooks with this one (adding audiobooks into the mix this year certainly helped me reach my goal quicker). It was read by the author, Aziz Ansari, and if you're a fan of his humor you will enjoy this book. It was comical yet poignant at the same time, and listening to the author read their own book is a nice treat.

It's A Long Story — This new biography of Willie Nelson was good. I'm not even the biggest fan of his music, but I thought his would be an interesting story. And it was. If you are a fan, this is a must-read.

10% Happier: How I Tamed the Voice in My Head, Reduced Stress Without Losing My Edge, and Found Self-Help That Actually Works — This book was all about meditation. But it was written in a no-nonsense way that made the topic very accessible. There was no fluffy voodoo crap, no stories of people sitting around going "Ohmmmmm", just straight-forward talk about this man's situation and how he came to use meditation in his life to control his anxiety and stress, and it was really well done.

Yes Please — Amy Poehler's humorous book... another entry in the obligatory "comedian writes a funny book about life lessons" category. It seems every comedian or celebrity feels they need to write a book like this, and they are all essentially the same. Aziz's Modern Romance book was slightly different, because he actually looked into research and studies about one central topic: relationships in the modern world. This book was fine, but afterwards I decided I was kind of over these types of books; I don't care how hilarious you claim Amy Schumer, or Chelsea Handler, or whoever's new book is, I'm done with this specific genre.

The Fellowship of the Ring — I attempted to read the LOTR books a long time ago and failed. This time, I made it through the first one, but I've been at a dead stop on page 20 of the second one. We re-watched the movies, which are great, and I am glad I am getting around to reading these, but it's been slow.

All the Light We Cannot See — As much as I wanted to like this book, I never could get into it. I'm glad I stuck with it, as the ending was at least somewhat satisfying, but it was hard. The writing style was too drippy-poetic for my tastes, sentences were choppy. Cut up. Like paper scattered on sunlit sand. (See what I did there?) I found the book at times confusing because I wasn't sure which character I was reading about, but mostly I found each character's story too dissonant. The loose theme of always coming back to everything being about light was thin at best and, again, mostly a bunch of poetic flim-flam I wasn't really in the mood for.

From Baghdad, With Love: A Marine, the War, and a Dog Named Lava — My cousin passed this book onto me, because she knows we both like dog books. It was an interesting story about a soldier who 'adopts' a dog while in the military over in Baghdad, and the hoops he has to go through to bring her home. Not bad, especially for a dog lover.

When Breath Becomes Air — I'm going to declare this my favorite book of 2016. It's a memoir from a neurosurgeon who suddenly ends up with terminal cancer. He is extremely introspective and reflective on what life is about, what makes life worth it, and other deeper musings. It was a quick read, but a really, really good one. Grab a tissue box. Even for someone who deals with these topics more often than the average person, it had me in tears more than once.

Little Bee — A slightly different book, but rewarding. It's hard to say what it's about, but I thought it was good.

Animal Farm — I'm glad I finally read this classic. Once again, as most distopian or satirical classic novels are, this book proved true in multiple ways. It was also especially interesting to take note of different things in the book and different things that happened during the election campaigns.

I Am Malala — Malala's story is an interesting one, and one worth telling, but I didn't find this book phenomenal like some people did.

Inside of a Dog — Fairly intriguing ideas and concepts, but I began to lose interest about 2/3 through. This book is extremely detailed and reads kind of like a psychology study published in a medical journal, so it's not for everyone. It was a tad too long-winded.

All the Ugly and Wonderful Things — A new book from a new author this year, this one was really good. The story is not exactly pretty, as it is about a child who lives with drug-addicted parents, but it was worth the read.

The Joker — This graphic novel was a darker take on the Joker. The artwork was simply stunning; one of the early pages with the Joker walking out of Arkham Asylum was beautifully done. The story was pretty good too, but the artwork was so great!

The Immortal Life of Henrietta Lacks — This book got to be long-winded. The author weaved in her own story of investigating HeLa cells and the family of Henrietta, which I understand to a point, otherwise the book would have been too dry and medical. But the details upon details about the author's daily life were not needed. The audiobook version also became very grating with the voices the reader was using. All in all, just meh.

The Book Thief — Great book! It was creatively told from a very different voice and kept the story very interesting and enjoyable. 

And after that, I've been reading the Harry Potters. So there you have it! 

Photo Shoot: Lesson Learned

I've been sitting on the following blog for quite a long time, so I thought I'd finally publish it. Here goes:

I thought I'd share some thoughts I had after our photo session from last fall, in case you might be thinking of doing one yourself in 2017.

With everyone and their brother proclaiming themselves as photographers these days, there is definitely an over-abundance of choices for photographers to use for photo shoots. Being the person I am, I am very, very particular about photographers. I'm also a harsh critic. Most people are fine with almost all of the work that is out there, but truthfully there are a lot of mediocre photographers who don't really know what they're doing, which bugs me. It devalues the creative work of people, like myself, who actually know what we're doing—but that's another rant for another time.

Last year, I had my list narrowed down to three photographers whose work was seemingly up to my standards. One was significantly cheaper than the others, they had done my friend's wedding and their photos looked great, and we went with them. They had good photos on their Facebook page with nice outdoor backgrounds, on a piece of property they have set up specifically for this.

My first suggestion for doing a photo shoot is: Book early! Unfortunately, I put off contacting the photographers for a little while. I wanted a date in the fall when the trees would be turning—like lots of people, I'm sure—but they were almost all booked up and I was going to to have to push off our shoot until the spring. I learned that they are now more of a 'group of photographers' and we wouldn't have the woman who shot my friend's wedding. I jumped at the one open session, which turned out was with one of their B-list photographers. I realized later that the lady I emailed with to set all this up was the main family portrait person, the girl who did our shoot was not.

Our photo shoot was short and sweet, and we had a decent time. Our photographer seemed knowledgeable enough. I said I wanted some photos with just us, some with our dog, but I was leaving the rest up to her expertise. She was pulling up various poses on her phone for ideas during the shoot, which was fine with us, and we were done in 40 minutes and heading back home with Josie not too traumatized.

A few weeks later, we received our "preview" on Facebook, which is how this group does it. They posted about 8 photos of us to their page, and I shared the album with excitement. The photos looked great, but it would still be another month or two before we got all of them back.

I will say a small complaint right now about the photographers we used, and I know it's very nit-picky, but to me it was very evident whose photos they loved, and whose photos they were just doing their job. For some super cute families or couples, they kind of went on about how adorable they were, how much fun they were, what-have-you, and then for the other not-so-perfect people, of which I will lump in our set of photos, there was nothing. It was just like "Well, here's the photos of these people, they're nothing special." It kind of hurt, just a smidge. Like I said I know this is nit-picky, but it felt like a subtle way of saying "This isn't our best work, but here's your photos anyways." Either they should fake enthusiasm with all of their clients' previews, or just post them with no comments. I imagine I can't be the only person who's ever picked up on this.

The day came when I got our photos back, and it was ahead of schedule. I downloaded all of the images, super excited to see the rest of them.

And then... my excitement subsided as I started to arrow through them. They were not that great, and there were a few that were downright bad and I was surprised they included them in our final selections. Essentially, all of the good ones were the ones that were posted in our Facebook preview. There weren't many 'new' ones that particularly wowed me.

Jarrod and I sat down and marked which ones each of us liked, and there ended up being 12 photos we liked, 7 of which we felt worthy of getting prints of, and 22 that we didn't like at all. So here is the live and learn part...

Nope, never getting prints of this one.
Plus, the lighting is awful on this.

Most of the photos we didn't like were ones where we weren't looking at the camera. There were a lot of cutesy poses where we were gazing into each others' eyes, kissing, or just sharing a gentle smile, not looking at the camera. Some people might be a fan of those, but honestly I don't know who would get large prints of those to hang on their walls. This isn't an engagement photo shoot, I really don't need a bunch of lovey-dovey photos. I'm not going to hang a large 11x14 of the two of us kissing in my house, I'm going to hang up the family portrait of us and our dog. Furthermore, from a guy's perspective, Jarrod didn't care for those because he said "That's just not me, I'm not like that." And it's true. It's nothing against Jarrod whatsoever, because I would venture to guess that most guys aren't exactly movie-style romantics. So for him those seem very unnatural, and honestly they feel that way to me too. I didn't say anything during our shoot because I didn't realize just how many of them (photos not looking at the camera) we were taking. And, live and learn.

Basically, the next time we do this I want more traditional, portrait-style photographs. Some people want the cutesy photos, but now that I've gone through this, I learned I'm not one of them.

And, remember how I said I was really picky about photographers? Well, turns out their photo-editing skills are not as good as I thought, especially on their black and white photos. Take a look at the comparison I loaded on here. The top photo is their version, the bottom is mine.

Really, whenever we do this again, I just need someone to take the photos and to send me the raw files. I can do the editing myself, which I'd almost prefer seeing as how few people actually know how to do it well. I'm not even an expert, but I feel I can edit out some really natural-looking photos that look good. The black and white photos we received were not great, and after about 10 minutes in Photoshop, I had them looking way better. I did a blind test with Jarrod and asked which one he preferred, not telling him which one was mine and which was theirs, and he picked mine every time.

It's kind of funny because for this photo shoot, we had a good time with the photographer, but the photos we ended up with were just so-so. For our wedding, the photographer ended up driving us nuts, but we got some damn good photos from him. Maybe if we're lucky, next time I can find a fun photographer AND they know how to take great photos, haha!

My last suggestion is the most difficult. If possible, I would suggest hiring a photographer you know. Even if it's just a little. Picking a photographer is much like picking a name out of a hat, and that was certainly my case. Yes, they had photoed my friend's wedding, but it was a different person who only does weddings, not the actual photographer we got. Ironically, the same week we got our previews, I also saw a really neat piece about 6 different photographers who took a photograph of the same man. Each person was told a different story about the man, and it showed that photos are entirely dependent on the photographers impression of you, the subject. Check it out here, it's a short little fascinating video. With that in mind, if you can find a photographer who knows you, I would bet your photos are going to be even better because of it. They might know a tiny bit of your own life story that influences their work just enough to produce some really spectacular images. Next time I do this, I'm going to most likely choose someone I kind of know.

Tale of an Undecided Voter

For the entire election season, I have been consistent in my immense distaste for both Hillary Clinton and Donald Trump.

For weeks, I have been adamant that on election day, I would go to the polls. I would vote in the state races, but I would be leaving the box for president blank.

Then today was the day.

Usually about a week before the election, you start hearing musings such as "If anyone is still undecided at this point, that's ridiculous" or "How on earth could you not know who you're going to vote for at this point?"

Up until this morning I was steadfast in my decision. Then I felt like my protest of not voting wasn't much of a protest at all, and I needed to pick someone. After all, it's not like anyone counts up the amount of votes not cast. I texted a couple people in a state of panic over the bundle of nerves I found in my stomach.

In the afternoon I drove to my polling place and parked.

And I sat in my car mindlessly browsing through my phone for 15 minutes. I wasn't looking at anything, it was just my cover up to avoid staring into space while I still was trying to decide what I was going to do.

I finally decided it was time to walk in; I couldn't delay this any longer.

I filled out my entire ballot, except for the first question. And I sat there for another 10 minutes staring at the boxes for president, trying to still decide what I wanted to do. Should I leave it blank? Should I pick someone?

I started to fill in a box. Immediately as I made my outline, my stomach dropped.

I filled in the box completely. And stared at my choice. For a moment, I thought of going and asking for a new ballot saying I had changed my mind. For a moment, I felt good about it. For a moment, I almost cried.

But I just sat and stared. Another 10 minutes. All the people who walked in with me had come and gone, new people coming and going.

In the end, I knew I had to get up at some point, just like I knew that eventually this day would get here. Walking to turn in my ballot, my inner voice was wondering if I had made a choice that I could be okay with.

I turned in my ballot. It's over, done. No going back. No redo's.

I think I made the right choice for me.

Picking Up Groceries

Tonight I used the Walmart Grocery Pickup for the second time. I'm officially a fan.

If you haven't heard of it, some Walmart stores are now offering Grocery Pickup, which consists of ordering your items online and, you guessed it, picking them up at the store. No walking through the store involved.

You can order deli meat and cheese, fresh meats or veggies, household items, pharmacy items, toiletries, cosmetics; there is an impressive amount of stuff available. Building a cart online is super easy, you reserve your time slot for when to pick them up, pull into the designated spaces next to the store, call to tell them you're there, and then they bring out your stuff. It's awesome.

Moms are loving it because they don't have to drag their children through the grocery store. I am loving it because of my health issues. There are some times where I just don't have the energy to walk through the store. And I cannot tell you how happy I am that this is now an option for the upcoming cold and flu season. I won't have to walk through the store and potentially immerse myself in everyone's germs.

The first time I tried it all told my trip took about 20 minutes, from the time I pulled up and called to let them know I was there, to when they were done loading my groceries in my car—which is still at least half the time I'd spend in the store. This second time only took 8 minutes. And they've given me a complimentary bottle of water both times since it's kinda hot. Nice touch!

I promise I'm not getting paid for this post haha, but I wanted to spread the word because I'm hoping this program is here to stay. If you are interested in trying it out at your own Walmart, email me and I can give you my code to get $10 off your first order (I get $10 off too.) It's not available everywhere, only select stores, so you'll have to check if your store offers it. Honestly, I think this will stick around because I see this as the way of the future. I can totally see a future where Walmart has a set of retail stores like they have now, and another building that is just a straight up warehouse where workers pick your items for Grocery Pickup. There isn't really a storefront, there wouldn't be any cost to make the store look nice, just people getting your groceries together and you driving up.

Friday Fast 5

Five quick things!

1. I've been in the mood to do some "fall cleaning." What is it about the change in seasons that seems to motivate many of us to tackle our crap? We didn't do a spring clean this year, but I've been itching to get rid of some things. Yesterday I started getting to work and filled two trash bags with stuff, and started parking outside so I can put stuff in the garage, haha. 
2. I love Hill-Rom, the medical equipment company. My vest machine that I use that is essential to my health had started showing big time signs of wear in the past week. I first noticed it on Sunday. It worked fairly ok on the lower settings I do but had a hard time keeping up on the ultra high settings. It was like it couldn't force enough air into the vest to actually pulse it against my body, it was just loosely shaking. I checked the hoses for leaks, I checked my vest itself for holes, and didn't find any so that wasn't the problem. I got my latest vest machine back in April 2013. I pulled out the manual to see what the lifetime expectancy on it was, and it was two years with "normal use." Who knows what normal use is, but I suspect I use it more than normal since I do 3-4 treatments a day, instead of the normal 2. I've clocked 1333 hours on it. I called them on Wednesday, explained my issue, she looked up the serial number for my vest, and I assume it showed her I've had it for over 3 years, well past the life expectancy. She was overnighting me a new one and I should put my defective one in the box to ship it back. I repeat: I love Hill-Rom. I don't think I would ever switch vest manufacturers simply because their customer service has always been so hassle-free. Usually nothing in the medical world is easy like this, so it's awesome that I don't have to jump through hoops for this thing that I need every day. They didn't ask for my current insurance, they are just sending me a replacement. That tells me they're committed to providing good equipment, and I am ever so thankful (now, getting an initial machine for your child can be a hassle depending on insurance, but thankfully these replacements are not.)
3. Josie's birthday is tomorrow. She turns 4! I got her some cookies, some Frosty Paws doggie ice cream, and a new duck toy she can destroy. Can't believe we've had her for almost 4 years. In human years, she is turning 32 haha.
4. I'm so ready for fall, as I think most are. Earlier this week was a bit cloudy and cooler, especially in the mornings, which was a nice little glimpse of things to come. Actually, I'm so excited I think I'm going to put up all my fall decor as soon as the calendar turns September.
5. I've been growing my hair out since last Christmas and I think I've finally reached a length I'm happy with! It is similar to my hairstyle I had for our wedding. I don't want to grow it out super long, or even shoulder-length like I had in high school. I'm at a bit of a decision point though... do I want to dye it? or do like a wave/perm thing? or keep it straight? I loved having my short pixie cut, but was ready for a change. I am sure I will go back to my pixie cut at some point, but for now I'm excited to have options again!

One Day More

Tomorrow I am scheduled to finish up IV meds. I'm so ready... I haven't had a shower since July 27th. Miraculously, I don't smell. I wash my hair over the side of the tub and give myself baby wipe baths, and thankfully that's enough to keep me moderately clean and presentable in the meantime.

I've been home since last Tuesday. I came home on two meds, one a full-time, 24/7 IV pump and the other running every 8 hours. The medicine I was on 24/7 ran slowly all the time. This was a first for me, I've never had this kind of setup at home but I figured it was worth a try. So I carried around "Chad the CADD pump" with me everywhere I went. Chad and me were friends.

The benefit to it is you only have to change out (refill) the medicine once a day. The other method would have been running the med every 4 hours, which would mean no more than 3 hours of sleep or naps at a time. I tried that once before and it was exhausting; it practically negated the benefit or desire to be home. Even though being hooked up constantly felt limiting, the IV pump was actually pretty small and light so I was able to get around the house ok, and I was allowed rest. But after a while it did get a bit cumbersome.

We ran into some issues starting on Saturday. I was having tingling and prickling feelings all over, which is very unpleasant let me tell you. If you could imagine your body is a hollow container, and it's full of lightning bugs, it would be like each lightning bug lighting up is a like a tiny prick from a needle, in a different spot every time and in varying intensities. We finally decided to stop the 24-hour med on Monday after trying a few things didn't alleviate the prickling.

I've continued on the other medicine and will finish with it tomorrow.

It's been nice to be home, but it'll be even nicer to get back to normal.