She's generally not this tired in the afternoon...must be all of the swimming!
Friday, June 28, 2013
Thursday, June 27, 2013
Thankful Thursday: Viewing Parties & Sweat
It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:
Mandi's List:
I'm thankful for Jelly Bellies. I'm sure I've done this one before...but they're so good that it can be repeated. And really, there's no explanation needed. They're just AWESOME.
I'm thankful for big water cups. I try to drink a lot of water in a day (a gallon or so), and unless I have a BIG cup, it doesn't happen. I loathe having to refill a cup, especially over and over again (if it's small, you spend all day filling it up). So I use a 25oz and a 34oz cup, so I don't have reload very often.
I'm thankful for family viewing parties of the Bachelorette. While it's not the most edifying show on TV, it definitely is entertaining and gives us all a good laugh. Josh and Chrissy have been coming over to watch the Bachelor or Bachelorette for many seasons now, but since my parents are back, we invited them to join the action on Monday night. We all enjoyed a yummy taco dinner and watched "love" happen (and by love, I mean, "like". And by "like" I mean "feelings brought on by extreme situations that never last beyond the show"). It was a blast. Since it was in Germany, my dad spent most of the show typing things into a translator on his ipad, and having it say his thoughts in german. It was hilarious. Mom, Chrissy, and I gabbed about the potential in each man. Ronnie controlled the remote, pausing it occasionally so the peanut gallery would finish their conversations and shut up. All in all, it was eventful, fun, and a must every week!
Ronnie's List:
I'm thankful for fresh flowers. We recently replaced some dead flowers in a couple of pots in front of our house with new fresh white vincas and I'm digging the look. Granted, I don't know how long they'll live in 115+ degree weather, but I'll be sure to enjoy them while they're still around.
I'm thankful for Home Depot. I feel lost and like a complete idiot every time I'm in that store, but they often have just what I need to complete project x, y or z. If they don't have what I'm looking for, they are always so helpful in trying to locate it. I also pick up a little bit more knowledge each and every time I set foot in that store.
I'm thankful for sweat. Sweat is generally an indicator of working hard at the gym. At least for me, when I start sweating, I feel like I'm actually working. The beginning of workouts are always tough because I don't see the return right away and I'm always thinking to myself, "you better push harder to break that sweat.". When I finally do see those drops of sweat falling off of my forehead, I always tend to get more energized during my workout.
So, what are you thankful for today?
Tuesday, June 25, 2013
Cystic Fibrosis ALWAYS Gets Worse
Cystic Fibrosis always gets worse. It can't get better once you reach ____% lung function. Once you start going into the hospital multiple times a year, you'll probably go multiple times a year for the rest of your (short) life. When you lose lung function, you can't get it back.
Any of that sound familiar? I really hope it doesn't, but I have a feeling that some of you have heard all of those things a time or two. I know I did growing up, and the sad part is, I actually let myself believe some of it. I fell for the part of CF getting worse year after year hook, line and sinker. I was reserved to the fact that I would lose a little bit (or a lot bit) of lung function each year and there wasn't much I could do about it.
I mean, that's what my friends with CF said. That's what I read on the Internet. That's what I heard some CF docs say. It must be true then right?
Wrong. It's wrong for so many different reasons that I don't have the time to list them in this blog, but I'll tell you the biggest reason that it's wrong...
I got caught up in thinking about all of the things that CF could do and lost focus on what I was doing.
That becomes the problem. When we are so concerned with what could happen with our health that we let it distract us from actually doing something about our health now, we have an issue. I totally get it as much of society is stricken with the "it-must-be-somebody-else's-fault" bug.
If we don't feel well, it has to be because of CF. If we're having a bad day, it must be because of CF. If we're mean to our friends, it must be because of CF. If we flunk a test, it must be because of CF. If our lung function declines, it must be because of CF. And on and on and on we go, blaming anyone and in this case, anything else, before we're willing to look in the mirror and realize that we're the problem.
It took me 8 years of declining lung function and 52 days in the hospital to realize that. It took me not being selfish for the first time in my life and actually putting a special girl's needs in front of my own by actually taking care of myself the way that I should. It got cemented when I brought another special girl into this world and made a promise to her that I would always work my booty off.
What's it going to take for you to change?
And I know, I know, there are people out there who will say, "I never miss treatments and I always exercise, but my lung function continues to get worse." Yes, that can be the case (I used to exercise and do my treatments too while seeing my lung function decline - I just wasn't doing as much as I obviously needed to). It however is the case that you're lung function will decline if you don't do your treatments and you don't exercise. . It is also that case that some people wait for far too long before they finally decide to "never miss treatments and always exercise". To be honest, I was almost to that point 4 years ago, but by the grace of God was able to fight back.
So what brought this blog on? I had my 1 month post-hospital clinic visit yesterday and for the first time in 12 years, I had a FVC of 92%. My FEV1 was 75% which is still up from my "baseline" of 50% in 2009 that they said I'd probably stay at. They were wrong.
If you'd like to get healthy, do what you do in spite of CF. No matter how CF decides to act tomorrow, you just make sure to out work it. If your disease is being a little more aggressive, than you must be that much more aggressive. If things are getting better and CF is slowing down a bit, celebrate by kicking it's booty even harder.
I know you can do it, now you just have to believe that you can and will do it!!
Any of that sound familiar? I really hope it doesn't, but I have a feeling that some of you have heard all of those things a time or two. I know I did growing up, and the sad part is, I actually let myself believe some of it. I fell for the part of CF getting worse year after year hook, line and sinker. I was reserved to the fact that I would lose a little bit (or a lot bit) of lung function each year and there wasn't much I could do about it.
I mean, that's what my friends with CF said. That's what I read on the Internet. That's what I heard some CF docs say. It must be true then right?
Wrong. It's wrong for so many different reasons that I don't have the time to list them in this blog, but I'll tell you the biggest reason that it's wrong...
I got caught up in thinking about all of the things that CF could do and lost focus on what I was doing.
That becomes the problem. When we are so concerned with what could happen with our health that we let it distract us from actually doing something about our health now, we have an issue. I totally get it as much of society is stricken with the "it-must-be-somebody-else's-fault" bug.
If we don't feel well, it has to be because of CF. If we're having a bad day, it must be because of CF. If we're mean to our friends, it must be because of CF. If we flunk a test, it must be because of CF. If our lung function declines, it must be because of CF. And on and on and on we go, blaming anyone and in this case, anything else, before we're willing to look in the mirror and realize that we're the problem.
It took me 8 years of declining lung function and 52 days in the hospital to realize that. It took me not being selfish for the first time in my life and actually putting a special girl's needs in front of my own by actually taking care of myself the way that I should. It got cemented when I brought another special girl into this world and made a promise to her that I would always work my booty off.
What's it going to take for you to change?
And I know, I know, there are people out there who will say, "I never miss treatments and I always exercise, but my lung function continues to get worse." Yes, that can be the case (I used to exercise and do my treatments too while seeing my lung function decline - I just wasn't doing as much as I obviously needed to). It however is the case that you're lung function will decline if you don't do your treatments and you don't exercise. . It is also that case that some people wait for far too long before they finally decide to "never miss treatments and always exercise". To be honest, I was almost to that point 4 years ago, but by the grace of God was able to fight back.
So what brought this blog on? I had my 1 month post-hospital clinic visit yesterday and for the first time in 12 years, I had a FVC of 92%. My FEV1 was 75% which is still up from my "baseline" of 50% in 2009 that they said I'd probably stay at. They were wrong.
I know you can do it, now you just have to believe that you can and will do it!!
Monday, June 24, 2013
A Productive Weekend
Ever have one of those weekends where you just get a TON done? That was our weekend this weekend. It was a little bit of a "if you give a mouse a cookie..." scenario.
It started Saturday. My parents got new outdoor furniture, so we got their hand-me-downs...a pretty teak bistro set and a dining table and chairs. They also got rid of a rug, which we put in our study, and a little side table. All of which we gladly took (thanks, guys!) Well because we had new furniture, Ronnie wanted to get our fountain back up to par on Saturday, so he fixed it and cleaned it. Works like new. Then I, of course, wanted to make the outside patios and sidewalks look nice. So when Mckenna was up at 5 on Sunday I thought, "hey...let's capitalize on this." So me in my PJs and Mckenna in hers, with coffee and milk in hand (I had the coffee, obviously) we started hosing off the patios and sidewalks. Ronnie joined us. But because we hosed the patios, that meant the windows needed to be cleaned because they had water spots, so we cleaned the windows. When we cleaned the windows, some dirt and water leaked in, so we cleaned the indoor window sills. Mckenna decided she wanted to color, so while she did, I picked up, dusted and vacuumed. Then because things looked nice and because I was already moving stuff, I changed out some decorations and spruced things up a bit. When I did, I saw what a mess some of our storage areas were. So I cleaned out under our buffet, and our kitchen desk area. All the while, Ronnie was trying to replace the light in our microwave...which apparently is jimmy rigged with an automotive lightbulb and no manual, anywhere, says how to change it. We also went to Home Depot for a couple new plants and planted those.
Ronnie then took Mckenna with him to try to hunt down the light bulb for the microwave, while I ran to find something to fashion an activity table out of the end table my parent's handed us down (see left). I ended up buying a train set...that was WAY too big (Apparently I pictured the table was HUGE when at the store lol). So, I need to find another solution, but for now, it'll work well...it's just missing 3/4 of the train tracks. Sorry, Mckenna! Ha! It's just a piece of felt cut to fit, and then the train tracks on top of that. It'll work well enough for a little bit. Does anyone have any activity table ideas that DON'T require beans or sand or rice? I really don't feel like making, "leave the ______ in the bin," the most common phrase in my life. We play with beans and rice, but at designated times, and it's a mess, and I don't want it out all day long. But what are other ideas? I thought about legos, animals, felt pieces to stick to the bottom that make pictures. Fill me in on what you've done or what your kiddos love. I should mention it's a copper thing on top and indoors, so water should be avoided too.
Anywhoo..it was an eventful and productive weekend and has left Ronnie and I deciding we need to have days like that more often. It's tough sometimes with a toddler to feel uber productive, but she was a good sport and just "helped" all day. So I have a feeling next weekend will be a project-filled weekend as well.
It started Saturday. My parents got new outdoor furniture, so we got their hand-me-downs...a pretty teak bistro set and a dining table and chairs. They also got rid of a rug, which we put in our study, and a little side table. All of which we gladly took (thanks, guys!) Well because we had new furniture, Ronnie wanted to get our fountain back up to par on Saturday, so he fixed it and cleaned it. Works like new. Then I, of course, wanted to make the outside patios and sidewalks look nice. So when Mckenna was up at 5 on Sunday I thought, "hey...let's capitalize on this." So me in my PJs and Mckenna in hers, with coffee and milk in hand (I had the coffee, obviously) we started hosing off the patios and sidewalks. Ronnie joined us. But because we hosed the patios, that meant the windows needed to be cleaned because they had water spots, so we cleaned the windows. When we cleaned the windows, some dirt and water leaked in, so we cleaned the indoor window sills. Mckenna decided she wanted to color, so while she did, I picked up, dusted and vacuumed. Then because things looked nice and because I was already moving stuff, I changed out some decorations and spruced things up a bit. When I did, I saw what a mess some of our storage areas were. So I cleaned out under our buffet, and our kitchen desk area. All the while, Ronnie was trying to replace the light in our microwave...which apparently is jimmy rigged with an automotive lightbulb and no manual, anywhere, says how to change it. We also went to Home Depot for a couple new plants and planted those.
Anywhoo..it was an eventful and productive weekend and has left Ronnie and I deciding we need to have days like that more often. It's tough sometimes with a toddler to feel uber productive, but she was a good sport and just "helped" all day. So I have a feeling next weekend will be a project-filled weekend as well.