Petals

I wondered how many petals were in this flower, so I counted them. 186.

And over 50 of them were clustered in the middle in less than a centimeter of space. Isn't nature cool?

Off to A Good Start

We got a treadmill. Sadly, treadmills have gone the way of cell phones in that it is really difficult to find a "basic" one, one without tons of fluff. Personally, I just need something that adjusts speed and incline. But these days, treadmills come with enormous display panels, speakers, built-in fans, music players, trainer settings, various pre-loaded workouts, links to Google maps so you can "walk on a route", color screens, the options for extra features to do iFit with Jillian Michaels, and probably a few other things on the high end models we didn't even consider. However, the extremely few choices that only have those basic components also seemed so cheaply made. Another problem I wasn't expecting was the physical size of the display panels — some of them were so tall, and I am so short, there would be no way I could see over it and see the TV.

We got one that suited me well, without too much fluff, and parked it in the front room/dining room that's not a dining room/piano room so I can easily exercise. I'm thankful for the extra space for it, otherwise we would have had to compromise the office or take down the spare bed.

For me, the key to staying with it is having a TV to watch so the time just flies by. I could be sitting on the couch watching TV, or I could get up and walk for a half hour instead. No big deal.

I am also thankful for my Netflix subscription, who knew it would play such a role in exercising. I have decided on a few shows that will cover my "30 minutes a day" routine I want to stick with:

1. Alfred Hitchcock Presents — I haven't seen many of these, but adding little doses of Hitchcock into my life sounds like some good variety. 131 episodes, 25 minutes each.

2. The Dick Van Dyke Show — I love this adorable show, and now I have a great opportunity to watch it. 159 episodes, 25 minutes each.

3. The Andy Griffith Show — I've seen many, many reruns of this but I think it would be fun to watch them in order. 249 episodes, 25 minutes each.

4. Price Is Right — Because I love game shows. Endless episodes M-F, 40ish minutes each once you cut out the commercials (Do you have diabetis?)

So yeah, I have over a year's worth of old TV shows to work with at the moment. Does anyone have any other suggestions for some shows to check out? Leave me a comment if you do!

Yay Home!

It's so nice to be back home. We are finishing meds at home this week. I am still renewed with hope about how things will turn out this time, and it is so refreshing to have this new 'attitude' about things. I never realized how much my doctor's outlook would affect my own. It just seems like my new doctors care a little more and have much more hope for my future, which in turn has given me the positive take on everything.

I was so very excited last night because I was able to take a fairly brisk walk with the dog for almost 1 mile! I could barely eek out a quarter-mile prior, so I was exuberant once I was finished and made it back home, realizing "I made it!"

Unfortunately, it's going to be the hottest week of the year here, which I'm not looking forward to. Not only do I have a giant sticker on my chest, in a way, I don't get to shower much with giant sticker/IV site on my chest, and mega humidity makes everyone feel gross. Yay... Plus, my choice of clothes is limited because there are only so many shirts that have a neckline high enough to cover up the site, pretty much all t-shirts and a few polos, but no sleeveless shirts which is what I'll be wanting most this week. I dress super casual while I do home IVs.

And Next Stop: 40

Great news today. No, scratch that: spectacular, stupendous, outstanding, splendid, magnificent news today...

We did a pulmonary function test, to see where we're at and if we're on the right track, and I blew a 35%! When I came in last week, I was at 24%, not good. But this is awesome! I am already better than I was last time I was in the hospital at Barnes; after we were finished, after two weeks of treatment, I was at 34%.

So already at one week, I'm back up to where I was. And now 40% doesn't seem so far away!

Your prayers are working.

Good Day, Sunshine

Today has been a really good day. And even though the hospital is always a sucky thing, I am feeling so positive this time around and can't say it enough: I feel like I am right where I need to be.

Do you ever have moments like that? Where you feel like God has brought you to the place you are meant to be? And you can trace the small path that brought you there? Thanks to my friend, who also has CF, we began having conversations earlier this year about switching away from Barnes. And that all happened because of Mary, a lady my mom works with, told my mom about something she (friend with CF) wrote on Facebook, which prompted me to email her. And then thanks to Jarrod and his consistent urging that I call Columbia. Then I finally called, I bumped up my initial appointment because I wasn't doing so hot, we came here Tuesday, it turned out I really wasn't doing so hot, and now I'm here. All because God put these people in my life.

Today started out great with Jarrod coming here early to eat breakfast with me. We both ordered breakfast trays from downstairs. I'm happy to say the food here isn't bad, and their breakfast is actually really good. You can order custom breakfast sandwiches, which is what we both got this morning: choose your bread, choose your egg, choose your cheese, choose your meat, and voila, yummy!

This morning, a Eucharistic minister brought me communion, too. Not only are they taking good care of me physically, I've been extremely pleased at the care my spirit is receiving too. They must have a great volunteer community in the churches here; so far, a woman brought me communion on Thursday for the Feast of the Assumption (I assume, but maybe it was just her day to visit), the hospital chaplain stopped by that night as well, a priest came by Friday and gave me a blessing, and then communion again today from yet another person. How awesome! I always thank them for coming by.

Jarrod hung around for most of the day and we went for a walk. We discovered the "Healing Garden", in the middle of the hospital. It is surrounded by four walls, but they are all glass and very nicely done. The small garden has plenty of seating, some plants, flowers, and trees, and a little waterfall which makes for a peaceful place. It was nice to get some sun and breathe in the fresh air. It struck me, too, how much quieter this place is instead of Barnes since it's not sitting next to a busy road or interstate (not to mention the lack of ambulance sirens due to the ridiculous violence of north St. Louis.)

Then Jarrod's parents came by for a visit, which was great. They all headed out between 4-5:00, so I've had the evening to myself. I'm looking forward to tomorrow, when my parents are coming to visit, and because I will feel even better tomorrow. I just know it!

Keep the prayers coming and know I am praying for you too. Cheers.

Lung Wars: A New Hope

When looking for a good doctor, it is a little like looking for good qualities in a spouse. You want a good listener, someone who shares your concerns, who talks things over with you, someone you can trust, and bonus if they're encouraging and positive. For most of my childhood, I had that in a great team of doctors. Then when I was forced to switch to the adult program, it was fine at first, but as time went on the initial interest faded. I didn't feel like they always had time for me; appointments sometimes took as little as five minutes, very in-and-out. They didn't discuss everything with me. And then, I really began to lose my trust in them.

Tuesday, I came to see the new doctor at the University of Missouri. Unfortunately, it was a bad appointment. My lungs are very, very sick and unhappy. And we needed to do another hospitalization, despite just finishing one on July 1.

So I am here in the hospital in Columbia with a new team of people, but oh what a good experience it's been so far. And it's only been two days.

There is so much I could say, but I won't bore you with the nitty gritty details. It's been a bit of a whirlwind but I'm realizing how much Barnes wasn't doing for me, how much they didn't involve me in the discussions of my care. I have learned more and discussed more in these two days I've been here than I ever did in my three years at Barnes. Many different doctors have sat down with me and said "So, tell me about..." whatever. And I do, and sometimes they say "That's good, keep doing that" or sometimes "We need to switch that up, this is actually what studies have found to be better and more effective." Who knew? I feel like my healthcare and my routine is getting the much needed full evaluation it needs, almost an overhaul.

Right now I am renewed with hope. Hope that I can improve my condition instead of just tolerate it, watching it slowly decline. But I know it's up to me. I have to keep these changes going when I go home, no ifs, ands, or buts about it.

Tuesday

Tomorrow is a big day for me. I am switching doctors and I have my first appointment with them tomorrow.

Well, we're almost 99% sure I am switching. There is still something that could throw up a red flag, something that we don't like, but it would have to be something pretty big at this point.

For most of this year, I have been questioning my care more and more at the hospital I am at. This was all brought on, really, because of a friend who also has CF who was having similar doubts. She took it upon herself to give another hospital a try and found out so much of what her doctors (also my doctors) were telling her was wrong. Without going into her story too much, I'll just say that once I started talking to her, I found there were a lot of similarities between her and me. We both have done nothing but go downhill while at this hospital, we both hate a certain doctor on the team (and that dislike extends to our husbands and mothers), and we both don't feel like our questions and concerns are truly being addressed. The final straw for me was this most recent hospital stay, when I had the complications that I had, and the best answer (after asking, and asking, and trying to ask a different way) we got was "Well, sometimes this just happens."

There's way more to it, but in a nutshell: I'm not confident in my doctors right now, I don't trust them. You need to trust your doctors, because you're essentially putting your life, your health, in their hands.

So tomorrow I am finally moving on to a new team. This friend I mentioned recommended her former team of doctors, who she loved and had seen for most of her adult life, so that is who I will be seeing. (And if it seems I'm being vague as to who it is, right now that's on purpose.)

I must say I'm pretty excited. It's a slightly longer drive, but still very doable. I'm hoping we can get my lungs back up to 40%. That's wishful thinking (the doctor we don't like pointedly said that to me) but one can dream, eh?

Angels Among Us

This local news story has gained international attention, and I felt it worth passing on myself. At a horrible accident in eastern Missouri, a priest suddenly comes out of seemingly no where to pray with the girl trapped in the car. Then he disappears. Angel? Read it and decide for yourself, but that's what I'm going with. :)

Advanced Reading Copies

This morning upon walking into work I saw a wonderful site: the lunch table was filled with 15 books. I know what this means... our resident book reviewer dropped off her latest bunch of advanced copies.

This happens randomly but every once in a while after a book has been officially published, our book reviewer will put all of her old books on the lunch table for people to take and read. Most times, they're by a bunch of up-and-coming authors, some no-names, or authors that have had one successful book but nothing much of note. However, occasionally there will be an author I've heard of. But this morning was, like, jackpot...

I saw it sitting there on the table, I've known the book cover ever since it was announced, and I made a beeline for it. There, sitting on the table was And Then The Mountains Echoed, the long-awaited new book from Khaled Hosseini, writer of The Kite Runner. For an author with only three novels under his belt, he's been wildly successful. I've really enjoyed his two other books, and was looking forward to reading his newest one.

I was almost giddy. Now I don't have to wait two years until the paperback version comes out; I have paperbacks of the other two... and I'm anal about having consistent paperback/hard-cover versions for an author. And I don't have to wait until I finally get the book after 34 other people at the library. Now that I have it, I'm having a hard time deciding if I should dive into this book next or go with my original plan of reading Gone Girl once I finish Jurassic Park. I've got less than twenty pages left in Jurassic Park so... I need to decide!