Thursday, August 15, 2013
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.
Monday, August 12, 2013
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?
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?
Friday, August 9, 2013
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. :)
Monday, August 5, 2013
Advanced Reading 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!
Wednesday, July 31, 2013
1000
Yay, this blog just received its 1000th pageview! It just happened too, because when I logged in it was at 999.
The problem is, Google's analytics that they built in to Blogger kind of suck. The data always only seems to go back one day. For instance, it may tell me that I've had 14 views in the past two days, but only tell me that 2 people read 1 post, with no mention of anyone else reading anything.
Compared to Google's actual Analytics, the kind I'm used to digging through at work, that's annoying. Going through our analytics is one of the things that I really like doing, strangely. You wouldn't consider me a fact-checking math person, but when it comes to website analytics, give me all the data I can get. My mind just goes bonkers over it; comparing, contrasting, cross-referencing. I couldn't do it all day long, but intermittently I find it really really fun. One of the things I like the most is when a news article gets picked up by someone and we get a lot of referrals. It's always interesting seeing where they all comer from.
Anyways, woo hoo for 1000 lifetime pageviews, and here's to many more!
The problem is, Google's analytics that they built in to Blogger kind of suck. The data always only seems to go back one day. For instance, it may tell me that I've had 14 views in the past two days, but only tell me that 2 people read 1 post, with no mention of anyone else reading anything.
Compared to Google's actual Analytics, the kind I'm used to digging through at work, that's annoying. Going through our analytics is one of the things that I really like doing, strangely. You wouldn't consider me a fact-checking math person, but when it comes to website analytics, give me all the data I can get. My mind just goes bonkers over it; comparing, contrasting, cross-referencing. I couldn't do it all day long, but intermittently I find it really really fun. One of the things I like the most is when a news article gets picked up by someone and we get a lot of referrals. It's always interesting seeing where they all comer from.
Anyways, woo hoo for 1000 lifetime pageviews, and here's to many more!
Tuesday, July 30, 2013
Super Dog
I think my dog's pretty fantastic (don't we all think our own pets are fantastic?) but she did something kind of amazing Monday night.
Suddenly, she was staring at something on the floor. Then she started moving closer to it, slowly stalking it like a cat. This all probably went on for a minute. Then she made her move and I couldn't tell you if she stepped on it, smashed it with her nose, or somehow killed it with her teeth. I got up to check out what she had and there it was: an upside-down, dead fly sitting on our kitchen tile.
She killed a fly... I don't even know how that works, but she did.
I can hardly kill flies with a flyswatter of 4"x4". I have to admit I was impressed. I mean, it's one thing for her to step on spiders, they can't fly. But an actual house fly, you know, with hundreds of eyes and sensors to detect your movements, aka, attempts to kill them?
I guess we can add "resident flyswatter" to her resume.
Suddenly, she was staring at something on the floor. Then she started moving closer to it, slowly stalking it like a cat. This all probably went on for a minute. Then she made her move and I couldn't tell you if she stepped on it, smashed it with her nose, or somehow killed it with her teeth. I got up to check out what she had and there it was: an upside-down, dead fly sitting on our kitchen tile.
She killed a fly... I don't even know how that works, but she did.
I can hardly kill flies with a flyswatter of 4"x4". I have to admit I was impressed. I mean, it's one thing for her to step on spiders, they can't fly. But an actual house fly, you know, with hundreds of eyes and sensors to detect your movements, aka, attempts to kill them?
I guess we can add "resident flyswatter" to her resume.
 |
| Watch out bugs, she may not look intimidating, but she's comin' after you! |
Monday, July 29, 2013
We Make A Good Team
I had to lector at church on Saturday night and Jarrod ended up running the sound board.
This weekend, the first reading was that looonnnggg reading from Genesis where Abraham continues to ask God about saving Sodom and he goes from saving 45 people, to 40, to 35, on and on and on until he finally reaches ten. Trust me, if you were impatient listening to it, it's just as bad if not worse having to read it.
Since I've been out of breath lately, I was a little concerned how reading would go. Luckily, it went fine. I would say if anything, me being out of breath slowed me down and probably made me easier to understand. Unfortunately, I also have to clear my throat often so I try to keep my voice from becoming froggy too.
Well, since my trusty husband was running the sound, and he knows me pretty darn well, he told me that he knew when I was about to clear my throat, so he put me on MUTE! Woo hoo! During the response, while they're singing the refrain, I also like to take the chance to clear my throat just in case. He muted me during that too!
Maybe he can run the sound every time I read... :D
This weekend, the first reading was that looonnnggg reading from Genesis where Abraham continues to ask God about saving Sodom and he goes from saving 45 people, to 40, to 35, on and on and on until he finally reaches ten. Trust me, if you were impatient listening to it, it's just as bad if not worse having to read it.
Since I've been out of breath lately, I was a little concerned how reading would go. Luckily, it went fine. I would say if anything, me being out of breath slowed me down and probably made me easier to understand. Unfortunately, I also have to clear my throat often so I try to keep my voice from becoming froggy too.
Well, since my trusty husband was running the sound, and he knows me pretty darn well, he told me that he knew when I was about to clear my throat, so he put me on MUTE! Woo hoo! During the response, while they're singing the refrain, I also like to take the chance to clear my throat just in case. He muted me during that too!
Maybe he can run the sound every time I read... :D
Sunday, July 28, 2013
Totally Rad: The Facebook Issue
Thanks to my dear friend Marie, I was introduced to the "Radical Life" blog. The Radical Life is thought-provoking, to say the least, and challenging. I highly recommend checking it out, it might just change your life, or at least awaken it. This all came about because my friend decided she was finally pulling the plug on her Facebook account. If you'd like to read about her thoughts on that, click here. But in the RL blog, he wrote about reasons to quit Facebook and objections to doing that. In short, it's not that Facebook is terrible, it's just that there are so many better ways to spend your time (but that really doesn't do it justice, I encourage you to just read the whole thing lol.)
This is not a completely new idea. I know that Facebook isn't a productive way to spend my time. And to some people, who haven't had FB their whole adult life or who aren't what I would call "power users", this all may seem quite obvious. Because it is, when you really think about it. But for those of us who have had Facebook all through college, and surely spent countless hours dodging our studies with it, it is still easy to get sucked in. It is so easy and so accepted to spend an hour (plus more...) scrolling through Facebook every day.
Thanks to all of those blog posts, I too have been doing a LOT of thinking and analyzing lately in regards to how I spend my time, aka life. But in addition to how much time we spend on Facebook, he also took a critical look at what we all do on FB. There were two points that really hit home for me in the original Radical Life post; they go hand in hand actually.
One was the observation of how few intimate moments we have these days. How true, yes, how true, said the Sour Kangaroo. Whether your time is interrupted by a text message or you spend more time playing with your phone than talking with your spouse or kids, that alone is a huge distraction and killer of intimate moments. But the bigger point is to think about just how much STUFF we all share online. How many times do people post photos of their babies onto Facebook practically minutes after they cut the umbilical cord? Or how often do people share photos of their spouse, because they're on a romantic dinner date and want to tell you about it? I would not consider myself an "oversharer" by any means, but the takeaway to me is that some stuff (okay, a LOT of stuff) just doesn't need to be shared. Relish in the moment, live in the now, take it all in! Don't ruin it by "Wait-hold-on-I-wanna-take-a-picture-of-you!" or thinking about how you should show this to your friends online. Some things should be left shared only by the people in the room.
The other part to this is we start crafting posts in our heads before or as things are happening; hoping our carefully crafted post will gain Likes and Comments. He called it "Life through a lens" and we are "reporting our lives instead of living them." I'd be lying if I didn't say I've fallen victim to this sometimes. And it is really great to realize it so I can work on cutting it out.
I think that part really resonated with me because my job is social media. I carefully craft posts in hopes that, as a business, we will get our posts in front of eyes. Because eyes, essentially, can equal revenue from the website. So thinking about what to post, what not to post, how to word it, what not to say is engrained in me. But I think there is a way to separate my social media obsession that I'm required to have to do my job from my personal life's social media usage. It's difficult, but I think it's possible. My husband has this incredible ability that when he walks out the door at the end of the work day, he is no longer working and it is far from his mind. I think the same thing is achievable for me. Once I'm off work, I don't need to and shouldn't think about what I should post to my Facebook.
Because the big question that this entire mess of thoughts and blog posts is: WHY DO WE DO THIS?!
I mean, seriously!? Why in the world do we feel like we have to share so much with our "friends"? I wonder if it has something to do with a longing to be appreciated, noticed, valued, etc. We want people to like us, we want people to pay attention to us once in a while, and with Facebook it's so easy. Consider telling your friend something. He/She is one person. You'll get a response from one person. But in telling Facebook, you've just told (probably) hundreds, and if ten people respond in some way, than woo hoo! I don't know, maybe that's not it, I haven't figured that one out yet. But still, that one personal response is way better than ten empty, lifeless Likes on Facebook.
Without trying to make it too complicated though, I wonder if the big reason we do this stuff is that it is just so darn easy and people are getting lazy. It's easy to "keep in touch with people" versus calling them up and actually talking to them. And I'm certainly guilty of that too.
In closing, if anyone's still reading this, all of this has made me do some reevaluation that I'm sure I will write about some more some other time. I am by no means perfect, and I am struggling. But I'm a little less quick to post things to Facebook the past couple weeks. Sometimes I even write something up then delete the whole thing because I ask myself "Why am I doing this?" I'm also working really hard not to visit Facebook on my phone very much, or on the computer. I deleted the Facebook bookmark off my browser so it's not staring me in the face all the time. I'm working on putting down the lens and just enjoying the moment. Because like the people I mentioned at the very beginning of this have said: there are SO many more awesome people and things you can spend your time with.
Cheers.
This is not a completely new idea. I know that Facebook isn't a productive way to spend my time. And to some people, who haven't had FB their whole adult life or who aren't what I would call "power users", this all may seem quite obvious. Because it is, when you really think about it. But for those of us who have had Facebook all through college, and surely spent countless hours dodging our studies with it, it is still easy to get sucked in. It is so easy and so accepted to spend an hour (plus more...) scrolling through Facebook every day.
Thanks to all of those blog posts, I too have been doing a LOT of thinking and analyzing lately in regards to how I spend my time, aka life. But in addition to how much time we spend on Facebook, he also took a critical look at what we all do on FB. There were two points that really hit home for me in the original Radical Life post; they go hand in hand actually.
One was the observation of how few intimate moments we have these days. How true, yes, how true, said the Sour Kangaroo. Whether your time is interrupted by a text message or you spend more time playing with your phone than talking with your spouse or kids, that alone is a huge distraction and killer of intimate moments. But the bigger point is to think about just how much STUFF we all share online. How many times do people post photos of their babies onto Facebook practically minutes after they cut the umbilical cord? Or how often do people share photos of their spouse, because they're on a romantic dinner date and want to tell you about it? I would not consider myself an "oversharer" by any means, but the takeaway to me is that some stuff (okay, a LOT of stuff) just doesn't need to be shared. Relish in the moment, live in the now, take it all in! Don't ruin it by "Wait-hold-on-I-wanna-take-a-picture-of-you!" or thinking about how you should show this to your friends online. Some things should be left shared only by the people in the room.
The other part to this is we start crafting posts in our heads before or as things are happening; hoping our carefully crafted post will gain Likes and Comments. He called it "Life through a lens" and we are "reporting our lives instead of living them." I'd be lying if I didn't say I've fallen victim to this sometimes. And it is really great to realize it so I can work on cutting it out.
I think that part really resonated with me because my job is social media. I carefully craft posts in hopes that, as a business, we will get our posts in front of eyes. Because eyes, essentially, can equal revenue from the website. So thinking about what to post, what not to post, how to word it, what not to say is engrained in me. But I think there is a way to separate my social media obsession that I'm required to have to do my job from my personal life's social media usage. It's difficult, but I think it's possible. My husband has this incredible ability that when he walks out the door at the end of the work day, he is no longer working and it is far from his mind. I think the same thing is achievable for me. Once I'm off work, I don't need to and shouldn't think about what I should post to my Facebook.
Because the big question that this entire mess of thoughts and blog posts is: WHY DO WE DO THIS?!
I mean, seriously!? Why in the world do we feel like we have to share so much with our "friends"? I wonder if it has something to do with a longing to be appreciated, noticed, valued, etc. We want people to like us, we want people to pay attention to us once in a while, and with Facebook it's so easy. Consider telling your friend something. He/She is one person. You'll get a response from one person. But in telling Facebook, you've just told (probably) hundreds, and if ten people respond in some way, than woo hoo! I don't know, maybe that's not it, I haven't figured that one out yet. But still, that one personal response is way better than ten empty, lifeless Likes on Facebook.
Without trying to make it too complicated though, I wonder if the big reason we do this stuff is that it is just so darn easy and people are getting lazy. It's easy to "keep in touch with people" versus calling them up and actually talking to them. And I'm certainly guilty of that too.
In closing, if anyone's still reading this, all of this has made me do some reevaluation that I'm sure I will write about some more some other time. I am by no means perfect, and I am struggling. But I'm a little less quick to post things to Facebook the past couple weeks. Sometimes I even write something up then delete the whole thing because I ask myself "Why am I doing this?" I'm also working really hard not to visit Facebook on my phone very much, or on the computer. I deleted the Facebook bookmark off my browser so it's not staring me in the face all the time. I'm working on putting down the lens and just enjoying the moment. Because like the people I mentioned at the very beginning of this have said: there are SO many more awesome people and things you can spend your time with.
Cheers.
Thursday, July 25, 2013
Getting Better
Today has been a better day, but my cough is still pretty gruesome in the mornings. This is typical for me, I've always coughed most in the mornings, but it is a little worse than normal.
When I called my doctors Monday, I requested to try some steroids to open up my airways before we resort to antibiotics. So that's what we're trying. I've gotten two full nights of sleep the past two nights, and let me tell you how wonderful that's been; to wake up with my alarm and then realize "Hey! I didn't wake up overnight to cough!" It's been really nice.
The other night when I was going to bed early, I opened my nightstand drawer like I usually do, and pulled out my prayer books. I have three in there. One is a leather-bound, gold flake on the edges of the pages, written in the 1980s kind, another is a freebie I picked up at St. Joseph's in Wentzville, and the other is my favorite childhood prayer book from Precious Moments. It's a tiny 2"x3" book with prayers directed towards children, and I still like to look through it sometimes because it's so darn cute and, well, sometimes simple prayers still apply. I also found a little prayer card my mom made me with a prayer asking for sleep, which was oh so appropriate. She made it for me back when I was in college, I think, and most likely going through a similar time as I am right now with the night coughs. As I was paging through my leather prayer book, a Prayer in Time of Suffering hit home and I took solace in it. I thought I would share it in case anyone else is suffering this week, because it is really quite nice.
The prayer goes like this:
When I called my doctors Monday, I requested to try some steroids to open up my airways before we resort to antibiotics. So that's what we're trying. I've gotten two full nights of sleep the past two nights, and let me tell you how wonderful that's been; to wake up with my alarm and then realize "Hey! I didn't wake up overnight to cough!" It's been really nice.
The other night when I was going to bed early, I opened my nightstand drawer like I usually do, and pulled out my prayer books. I have three in there. One is a leather-bound, gold flake on the edges of the pages, written in the 1980s kind, another is a freebie I picked up at St. Joseph's in Wentzville, and the other is my favorite childhood prayer book from Precious Moments. It's a tiny 2"x3" book with prayers directed towards children, and I still like to look through it sometimes because it's so darn cute and, well, sometimes simple prayers still apply. I also found a little prayer card my mom made me with a prayer asking for sleep, which was oh so appropriate. She made it for me back when I was in college, I think, and most likely going through a similar time as I am right now with the night coughs. As I was paging through my leather prayer book, a Prayer in Time of Suffering hit home and I took solace in it. I thought I would share it in case anyone else is suffering this week, because it is really quite nice.
The prayer goes like this:
Behold me, my beloved Jesus, weighed down under the burden of my trials and sufferings, I cast myself at Your feet, that You may renew my strength and my courage, while I rest here in Your Presence. Permit me to lay down my cross in Your Sacred Heart, for only Your infinite goodness can sustain me; only Your love can help me bear my cross; only Your powerful hand can lighten its weight. O Divine King, Jesus, whose heart is so compassionate to the afflicted, I wish to live in You; suffer and die in You. During my life be to me my model and my support; At the hour of my death, be my hope and my refuge. Amen.
Sunday, July 21, 2013
Lazy Sunday
Well, I didn't bake my bread yesterday. We ended up helping some friends with some stuff, so I didn't have enough time to devote to it. Not to mention, not a whole lot of energy because...
I've been coughing a lot lately. It is incredibly frustrating and hard to stay positive, since just less than a month ago I was doing so well and I had just finished antibiotics. I'm calling my doctors tomorrow about it, I have a theory as to what's going on... I'll share some other time. But the other part of all this is I haven't been sleeping much, because the cough is waking me up at night for long periods of time. I was pure exhausted on Thursday and I'm feeling pretty exhausted today. After a four-hour coughing fit at 4am, I then slept in until 10:30 but I'm still really tired. So I'm lazing around the house for today. And most definitely not making bread, haha.
I've been coughing a lot lately. It is incredibly frustrating and hard to stay positive, since just less than a month ago I was doing so well and I had just finished antibiotics. I'm calling my doctors tomorrow about it, I have a theory as to what's going on... I'll share some other time. But the other part of all this is I haven't been sleeping much, because the cough is waking me up at night for long periods of time. I was pure exhausted on Thursday and I'm feeling pretty exhausted today. After a four-hour coughing fit at 4am, I then slept in until 10:30 but I'm still really tired. So I'm lazing around the house for today. And most definitely not making bread, haha.
Subscribe to:
Posts (Atom)