By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /


I switched in my brain from trying to fit CF into my agenda. I realized taking care of my body is priority number one. ♬ Don’t you think we’re better together ♬ ♬ Oh Honey ♬ ♬ I think we are ♬ Good morning. Good morning guys, from the cabin. How you doing this morning? How are you? I’m good. For the hours that I slept, I think I slept good. I slept. Remember that thing about the adrenaline crash? [Peter] Yeah. Oh my goodness. I thought I would feel better than this this morning. [Peter] Well… My lungs are like… I think they’re tired… [Peter] Yeah… I was up at 6 a.m., coughing. And like… [Peter] Yeah… I don’t even know… Well good morning, guys, and welcome to our day. But I did sleep… [Peter] Good! It was fun. [Peter] Yeah, it was cabin sleep you know? I feel like it’s not the most restful sleep in the world but you get rest. Yeah. Mine felt like real sleep except that I was having really weird dreams. Really weird. Okay, we are going to make some coffee. I got this campfire percolator. [rustling] I don’t know if you need a filter or not but we’re gonna put one in here. [rustling] There we go. [rustling] Okay. [rustling] We’ll do that. Let’s dump some coffee in there. [thud] Try not to drop the coffee… Alright, there we go. Let’s do a little more, why not? Strong coffee for the morning after sleeping at the cabin. And then I think this piece goes on here. Perfect. [splashing] [Peter] Put this on here… [Peter] Make me some coffee. Okay, I think we have coffee. Oh, yeah… [Mary’s dad] How’d it work? I think it worked! Oh my goodness. I am having a fire-roasted biscuit and a cup of coffee that Peter just made. Ahhhh… The generator is running at the moment, cuz I just did one of my nebulizers, and I’m about to do all my all my morning stuff. We actually brought the bed outside because we thought it would be fun to come outside while I do my therapy stuff. Oh, hi Mama [Mary’s mom] Good morning! [singing] Good morning, good morning! It’s so small! Like that just amazes me. [Mary’s dad] Okay, I want to try to make it go somewhere. [Peter] Okay. [Mary] Peter and my dad are trying out a drone that my dad has. [Mary] It’s up there. And I’ve got my vest going. [Mary] Doing all the things. [vest machine vibrating] ♬ upbeat music ♬ [Mary] Alright, we left the cabin, and we drove down the mountain and we’re sitting outside of McDonald’s and it literally says [Mary] 1%. We are trying to upload the vlog so that you guys can see our mountain adventure. Um, it says it’s gonna… It’s still… Oh it went to 2%. Pro-gress! So Peter ran into McDonald’s to buy some french fries and iced coffee. We did have coffee on the mountain this morning but a little bit of iced coffee sounds pretty good right now. So I guess we’re gonna sit here for two hours… It says two hours and 38 minutes now. Hmm, that’s a little tricky.
Well, we’ll see what we can do. Basically the end result was my body did great yesterday.
I had so much fun at the cabin, soaking it up and I was breathing easier than I am some days, and so I’m really, really thankful for that. I’m thankful that I was able to just focus on having fun. Today my lungs have been not great, and that’s understandable. So I’m just gonna rest, be patient with my body and eat some salty french fries. That won’t help my lungs but sounds good. Well, we made it. We are at my mom’s house and… So, how the afternoon went down.
The other day I was watching a vlogger who was…where were they? They were talking about… what were they doing? Sitting outside of a closed Starbucks to upload their vlog or I don’t know, something like that, and I was thinking about how many weird places we have…there’s my mom! How many weird places that we have uploaded the vlog. Like when we lived in Scotland, I would walk down the street at like 1:00 in the morning and stand in an alley, which is called a close in Scotland, and I would stand outside of one of the University of Edinburgh libraries, where I was attending school and their, and I would use their Wi-Fi because the library would be closed, but I would use their Wi-Fi and that’s pretty much how I uploaded every day in Scotland. And then I think of how many times we’ve gone to a Starbucks or… a few times we have used, like we’ve taken the vlog from the computer and put it on the phone and then uploaded with our phone’s internet. And then today on the way home from the mountain, I sat inside that McDonald’s.
It took a little over two hours to upload the vlog. Which, if you saw yesterday’s vlog, we did a speed test on our way up to the mountain and the speed test was a lot faster the day before than it was today so… that was a bummer.
But hey, it’s part of our life as vloggers, so [Mary] And we like the adventure! We do like the adventure, and, I mean, put that on our resume: we spent two hours at a Mcdonalds uploading a vlog! Classy. But we are gonna have a nice dinner with my mom. I took a shower and that was very nice after a day at the mountain. And I changed my clothes and now I’m rocking the, uh… The tall white socks with the three quarter leggings? I don’t know about that fashion statement, but that’s alright. That’s alright. [Peter] The dogs are eating their dinners [Peter] and we are eating ours. [Mary] Okay, hold on. We need to do a redo.
This is how it actually went down. [Mary] Okay ready? Go ahead. [Peter] Ohhhhhh! It’s my birthday, it’s my birthday! [Mary] Happy birthday! [Peter’s mom] Happy 30th birthday, almost. It’s not really my birthday… [Mary] It will be. It’s going to be my birthday in like, two weeks.Two weeks from… [Mary] And look who’s outside. Oh, two weeks from today! [Mary] That’s right, babe! And tell us about this cake. I think right now, this is my favorite. [Peter’s mom] You have lots of favorites! I have lots of favorites. I’ll tell you about all my favorite cakes. First of all, my mom has a Big Bird tin pan, cake pan. Do you still have the Big Bird cake pan? [Peter’s mom] I probably do. I remember the Big Bird cake pan. That was one of my birthday cakes. [Mary] And then did you do the like, um, yellow frosting on the top of it Yes. Where it would look like Big Bird. [Peter’s mom] Yes, yeah. That was easy cuz those little… [Peter] Yeah… [Peter’s mom] And since it’s your birthday, your sister’s birthday also… Yeah, it is my sister’s birthday also. [Mary] Cuz you stole her birthday. I did steal her birthday. [Mary] You crashed it. [Peter and his mom] When she was nine. Anyways, so, one of my other favorite cakes…do you remember one of my other favorite cakes, Mom? [Peter’s mom] No. Your chocolate chip cake. [Peter’s mom] I know! You used to like that! [Peter] I used to love that. [Mary] What’s this used to business? [Peter’s mom] I know! Well, it’s been a long time since I’ve had it. [Peter’s mom] I think I need to make one. Well anyways, this is an amazing one. First of all, it’s angel food cake with strawberry filling kinda thing, right? [Peter’s mom] Uh-hum… With whipped cream on the outside, oh my goodness! Can’t even wait. [Mary] Okay big reveal. [Peter’s mom] Hold on. [Peter & Mary] Awwwww. [Peter] I didn’t know it was double-layer. Look at that! [Mary] I think I’ll keep the camera on for the first taste test. Mmm! Mmm. Better than I remember. [Mary] It gave you a little wiggle in your step Yeah, this is good. Thanks Mom. [coughing] [sigh] [couging] It’s gonna beep. [beep] [coughing] I have to accept the fact that I only got two Caystons in. I wasn’t able to do my third dose. The timing just didn’t work out. They have to be at least 4 hours apart. With sitting at the McDonald’s for two hours waiting for the vlog to upload, and then by the time we got back here, it slipped my mind. My alarm went off and I didn’t reset it and whatever. Oh well. That is… it’s okay. That’s the reality. It’s okay, and missing pills and missing treatments is part of having a body that needs pills and treatments. I do my best and that’s all I can do. But I will say my compliance goal, like what I view as doing a good job on my compliance, like my pills and my therapy, my view of it now versus my first semester in college when I was trying to figure out how to fit it all in, I thought I was doing a good job when I’d get half my treatments in. But now, I miss, you know I missed that one Cayston today and I’m like “No!”, you know, like. It’s interesting what perspective does. My goal now is 100%, and, so then, when I miss one, it’s not that big of a deal. It is such an interesting thing, this is weird to go on this topic, but in the CF world, I feel like… I’m interested what, like, CF doctors would say is a reasonable compliance goal. Because obviously they know we’re human. We’re gonna forget pills, we’re gonna miss treatments, like, they know that that’s part of CF life. But like, I wonder what in…in the medical world’s mind, good compliance is? Is it 99% compliance? Is it 90% compliance? I don’t know. It’s interesting but, anyway… I think ever since I switched in my brain from trying to fit CF into my agenda, when I realized my body requires more time, more of my energy, more medication–when I realized that switch, maybe eight years ago or something, I realized taking care of my body is priority number one, and then fitting my adventures into that around my treatment schedule is how I should look at it.
That helped me view my treatments as priority number one. I think Peter and Ollie just came back in the house. [Peter whispering] Hi guys. [whispering] Hi. How you doing? Good. Well, I guess we should say. [both] As always, we will see you tomorrow. Good night! ♬ [Peter] Good night Ollie boy. [Mary] Ollie, was it raining outside? [Peter] It was raining so hard. [Mary] Good night Ollie boy. Good night. He’s so tired. Your eyes look so sad! ♬♬


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