MY CYSTIC FIBROSIS AIRWAY CLEARANCE MORNING ROUTINE!


Each day as I continue on these two oral antibiotics, I have this moment of decision. ♬ Oh, you gotta breathe, breathe, breathe, breathe ♬ ♬ Let it go and let it be, be, be ♬ [doors opening] [footsteps] [car door closes] Good morning, guys. I am on my way to go pick up some groceries. It is beautiful. It’s 73 degrees. [Peter] Alright, let’s see what we got here. [door opening and plastic bags crinkling] [Peter] Hello! Oh, you scared me so bad. [Peter] I scared you? Uh! Well, I was like, Peter? And then I didn’t hear anything, and then I was like…who? [Peter chuckles] [Peter] Hey buddy. [Mary] Ollie, what is that? Look. Who is that? [Peter] Hi! Did Peter surprise us? [Peter] I surprised you. I got the groceries. [Mary] Thank you! [Peter] Alright, looks like Mary got us the necessities like Dr. Pepper. [Peter] Oh, I needed some wood glue for a project I’m working on. [Peter] Carpet cleaner, I think for cleaning a purse. Toothpaste. [Peter] Excellent. And… [Peter] Avocado. Yeah, I am analyzing your purchases. [Mary] Are you going, why did she buy that? [Peter] No, not yet. [Peter] Bananas, mayonnaise, salsa, sugar. [Peter] Milk, half-and-half. Oh, she got me some yogurts. [Peter] Let’s see what flavors she got. Oh, yeah. Lemon meringue pie and carrot cake creation. [Mary] Have you tried that one? [Peter] I’ve had both of those and they’re delicious. No, thank you. I love them. I almost got you cinnamon bun. [Peter] Ah, that sounds weird, but… [Peter] I always say that, I know, but… [Peter] Oh, Mary’s been digging, in the mornings, little bagels with whipped cream cheese. So good. [Peter] And that’s all folks. [Peter] Okay guys, welcome to the messy basement as I… [Peter] work on, this is what I needed the wood glue for. So I’m making a, [Peter] you guys have seen the wood sign in our living room that says it is well. [Peter] I’m making a little one of those for some friends and they just moved apartments, so… [Peter] Um, we thought it would be a nice like, housewarming gift. So I am going to put these together. ♬ chill electronic music ♬ [Peter] Okay, I got those boards being glued together. We’ll check back in here a little bit later. Each day as I continue on these two oral antibiotics, I have this moment of decision. Uh… [chuckles] Mid-morning and I say to myself, I wonder if these antibiotics are gonna start working? And I make that decision whether I… take tylenol to prevent that afternoon headache. What it seems like is… depending on the day, the headache and the fever kicks in, well, the headache, so some days I’m just kind of waking up with a low-grade fever, but the headache tends to kick in mid, early, mid-afternoon and, or late. I don’t know. I guess each day it’s different. But yesterday I was at church and my morning, my head doesn’t hurt and so that’s fine. And then right after church, I was like, trying to decide. Well, I’ve been on these antibiotics for quite a few days now, maybe the headache won’t hit today. Maybe the antibiotics are working. And so Peter and I went out to lunch and I was like, I’m gonna not take tylenol and just see. I’ve got to see if the headache’s not there. Because I don’t want to just keep slapping that bandaid on, the tylenol band-aid. I’m thankful for that band-aid because it helps me function, but I need to know if there’s a headache going on. So anyway, I waited yesterday, and it turned out… Basically, then, once the afternoon happens and the headache starts, just like, sitting here, it’s fine. It doesn’t hurt that bad. Um, but then once I start coughing… it hurts so bad. So then, once the headache is escalated from a coughing fit, then the headache is at a higher pain level… until, and if, tylenol kicks in. So today here I am, Monday, and I’m trying to decide… are the antibiotics working? I can already feel… I’m getting ready to take my temperature and… I am pretty sure I’m gonna get a headache today. So I’m gonna take tylenol, I think. I think. I don’t know. I mean, it’s almost been a week on orals, on these antibiotics. So… I’ve got to know at some point if they’re working or not. But I think for today I’m just gonna go ahead and take tylenol, prevent that horrible afternoon headache. Like I said, it’s fine as long as I’m not coughing, but as we know, coughing is inevitable. And preventing, so when I do have a headache my body is like, uh! Breathing really like, strange, rhythmically, trying not to cough. Which that means… I’m not doing airway clearance and that means my lungs are suffering because of it. So, it’s important to keep the headache under control. But there’s that weird balance of… I don’t want to just slap the bandaid on it every day. So, we’ll see what happens, but I think for today I’m gonna go ahead and take tylenol. And maybe tomorrow the antibiotics will work. Maybe. I hope. I thought they would have started by now. I thought… that the… I thought it would have helped by now, but we’ll see. I’m actually getting ready to finish my vest for the morning. Lately the way I’ve been doing it is… I have been doing my nebulizers. So, in the morning I wake up in my bed upstairs. I spend, I don’t know, 30 minutes just staying in bed. Clearing out the initial junk in my lungs from the night. I was actually up at 5 in the morning this morning just coughing and… getting nasty stuff out of my lungs. And then I was able to fall back to sleep, which I was so glad. Anyway, then I spend like 20 or 30 minutes coughing and clearing my airways upstairs, and then I’ll come downstairs to this room. And I’ve been doing my pulmozyme and hypertonic saline nebulizers, and then I do like a, I think it’s called the Minnesota method. It’s like a programming on the vest, and I do a 30-minute set of that and then… I either restart it immediately and do the other 30 minutes, because for the last like, four years probably, I’ve been doing an hour of vest instead of a half-hour. I just find that it helps wake my lungs up better. And so I’m getting ready to do the second half hour right now, and um… Anyway. Yeah. I think my point was I have an hour-long program where each setting, so it goes like, a higher frequency and a higher pressure, each setting changes the frequency and the pressure, and I have a program that does a ten minute, what’s it? What’s the word? [Peter] Session? Not session. Setting. Each setting is ten minutes. So six settings at ten minutes each, so an hour. And I also have one that’s five minutes. And it adds up to thirty minutes. You get it. But I am doing the two times thirty instead of the one hour, because it feels better for the… pressures to change every five minutes instead of every ten minutes and I do it twice. That is as clear as mud. It makes sense in my head. You know what’s a random item of beauty? When you refill the soap container and it has bubbles all through it. Isn’t that so cool? Simple joys. Simple joys. [Mary] Ta da. Also, I use an empty saline syringe that I fill with water to water these plants. [Mary] It works great, especially for like the hanging ones. [Mary] We don’t close on our new house for a while, but I’m collecting [Mary] some cleaning supplies to take with us when we do close. [Mary] Because we probably won’t be moving full time down there. [Mary] There’s a lot of details to still get figured out, but we’re gonna need some essentials when we get there. [Mary] So, I’m just packing up some things now while I’m thinking about it, so they’ll be ready to go. [Mary giggling] What are you? Honey, I’m working here. I know. If you ever wonder how these designs come… to fruition, how they are birthed… Right there. That face of concentration. Look forward to some new designs soon. [Peter] Okay, so I have this all put together, now it’s time to get it rustic looking. ♬ upbeat electronic music ♬ [sanding] ♬ upbeat electronic music ♬ [sanding] [Peter] Okay, so here’s how I do these is I usually, um, do some white [Peter] splotches on it first, which helps repel some of the areas that the stain goes on. [Peter] And then I do like, a walnut to give it kind of an aged look, and then I do sun-bleached [Peter] grayish stain that I do on top, so, and I don’t let them fully dry, [Peter] that way it doesn’t fully soak in, and kind of makes it a little more splotchy, [Peter] which, if you’re normally staining you don’t really want, but [Peter] when you’re going for a rustic look, I think it looks pretty cool. ♬ upbeat electronic music ♬ I’m doing some cleaning down in the basement and I just came across my lunchbox. Now this lunchbox, my dad used to work for Blue Bird bus company and so he gave me this lunchbox. I think… Now I’m trying to remember. It was probably 2004 when he gave this to me, and so I was, in 2005 I started working at a little retail shop in our town, and I would take my own lunch. I’d often take a jar of the, what’s it called? Goober jelly. Um… And a loaf of bread, or, why did I take a whole loaf? Who knows. But I would pack that school bus lunchbox and take it to work. And then when I was a teacher at camp I would take it with me. And it has followed me for so many years and it’s sticking around, man. I’m not getting rid of that. I’m super sentimental. Plus it’s a quality lunchbox. So it’s sticking around. [Peter] Okay. This will be my second trip to the post office today. [Peter] Thank you guys for your orders. They’re coming soon. Well, it’s evening now and uh, well, it’s after, what is it? 6:30 or so. We are supposed to go hang out with some friends tonight at their new place and Mary’s feeling a little worn out. It’s been a lot this… Can you believe it was a week ago I was getting ready to fly out… to go look at houses. Oh, wow. Isn’t that crazy? Is that right? So, like, a lot has happened in a week and you’ve been going going going, pretty much. Because she was holding the fort down while I was gone, and then we’ve just had a lot. Social stuff. Yeah, a lot of social stuff and… Good social stuff. But anyways, Mary’s feeling a little worn out. I am. I’m hoping to revive in the next 30 minutes. Well, I need to finish that sign. It’s been drying out in the sun. So let’s, I printed the decal. So let’s go put it on. [Peter] All right. Here it is. [Peter] And you guys will recognize that [Peter] with…the one I made for Mary’s birthday two years ago, I think. ♬ upbeat electronic music ♬ [Mary giggling] [Mary] I was just over here testing my blood sugar to see if my Dexcom was correct, [Mary] and it was correct. It said 70…what did it say? [Mary] 79 and two arrows down. And for real it’s 73. But anyway, I looked over… [Mary] Look, there’s evidence of that bird in our house. I’m not kidding you. [Mary] That’s a birdie doo doo. So I’m gonna go treat this low. These are the times when I’m so grateful for this Dexcom because I don’t feel low at all. And it looks like I’m going down real fast, so let’s do this. Don’t mind my completely red face from coughing and just like that, we are back. We had a great time with our friends. I revived. I gathered up my energy and we had such a good time, and now we’re back home. And I’m actually about to dismantle this succulent. I call it the pagoda. I guess I thought it looked like a pagoda. What? But he will definitely need to be dismantled. He’s too tall. He can’t even stand up on his own. So I’m gonna behead him. This is what you’re supposed to do. Supposedly. I have done this to a few of my plants. So I’m a little nervous but I’m gonna do it. So basically… You… [breathing heavily] [scissors snip] Ah! You behead the top. This is how I’ve done it. And then I take off the petals by the bottom, and then I will keep those petals and propagate them, and we will see what happens. You telling them about succulents again? Yep. Sorry. She’s got it bad. With that we say. [both] As always, we will see you tomorrow. Good night! Good night ya’ll. ♬ And good night to the Ollie boy. He knows the cue. [Peter] Aw, you look so cute. ♬♬

Comments 100

  • Medical care and routines change with time- I talk a bit about what my current routine is. If you’re a medical nerd, I hope you enjoy 🙂 medical nerds unite 🙌🏻

  • Ollie is So cute. ❤🐶

  • Slap the Tylenol on. It’s so worth it to have the quality of your afternoon better and get better airway clearance and help the antibiotics work. I feel for you and think you are just trying to fight hard but you work so hard on every other part and if just a Tylenol will help some, it’s worth it. Also I am aware the acetaminophen can take a knock at your liver.
    Onward watching. I love the saline syringes for watering. And peter designing while the cuckoo clock is chirping. LOL.

  • the cinnamon bun chobani flip is really good!

  • I love you guys I would love to see a cleaning vlog xxx

  • Yalll lol because your moving to the south… Haha I moved from Jersey to Georgia last year totally understand!

  • I suffer from bad headaches and migraines at times. It’s not a good feeling. Praying that antibiotics kick in and help!

  • Fyi Wegmans is building 4 stores in Raleigh area. One is opening soon.

  • I actually enjoy seeing the succulent propagation and tending. I am into gardening too and got into it when I became more disabled. I love working on the plants at home or growing new seeds into plants. The work of planting them out is sometimes bigger than I can manage but my partner helps me too. I have basil growing this year and a mama and baby keiki orchid that I’ve been growing and are doing well. I am loving succulents for you though bc they are tiny which meets your love of tiny things and something to learn about and play with and watch grow and experiment with. It’s cool and nothing we need to have you stop talking about or truncate the plant talk. You are smart for figuring out this hobby! Once you move you should try orchids and growing your own herbs from seed in your house. I can share how to create a very cheap grow shelf to start seeds in February indoors for things that take awhile to grow like herbs and tomatoes and peppers, etc. i know you cannot do a full garden but maybe a small container garden near your back door or windowsill herb garden along with the succulents. For now what you have learned is interesting and the lessons you are sharing about propagating cuttings and leaves and their progress is fun to watch to me. No need to shut down the expression of details and happiness in it. I know peter is just trying to keep the content interesting to the average demographic too tho. Maybe you need a side channel of gardening with Mary (and her trusty assistant Peter) lol.

  • Small world. I work for a Blue Bird dealership. 🙂

  • Mary….please tell us where your succulents shipped from orrrrrrrrrr…….start selling the babies to us!!!! Lol's

  • Bird poopie lol!!!! He left you a present. 🤣

  • Hi Guys , Wow Mary , you sure have a ton of stuff to do to take care of your lungs , so sorry , but I am glad you can take such joy in simple treasures of life like bubbles in soap jars 🙂 , you are a trooper , keep up the great work !! Peter you are quite the craftsman , when I do wood work I never let the stain dry , the whole point of stain is to , well stain the wood to allow the natural grain to show through. Ended up looking really great too. Geez , you guy`s really keep busy !! So your getting some things ready for the move , good idea , it is better to start soon and slow than all at once. Well you guy`s have a great evening / day , thank for the video , take care , Gary 

  • I’m so sorry you get those headaches everyday. Yours are different than mine with the coughing aspect I can’t even imagine. I have a neurological issue which causes me to have a migraine everyday and it’s so terrible. I feel for you with that and it’s horrible. I hope they improve if maybe the antibiotics are given a bit longer. Continued prayers!💛🙏💛

  • I don’t have cf but I love following your life and how you deal with it you have open my eyes and made me understand side it so much thank you love following you but I do have a question for you when you move how will you move all your things and what will happen with ollie love you all Louise from London England

  • You should sell your baby succulents in your store Mary. ❤

  • Me: watching ALL the ads so your move can be a little smoother 😂🤗

  • Love getting to know you both more and more each day. I love the normality of your blogs, the humour, the medical need bits and of course seeing Ollie! Thank you for sharing (and passing on the word Combler!) Lexi xx

  • Simple joys😍 i love that same simple joy of the bubbles lol

  • I'm eating the Chobani carrot cake right now. omg

  • I don't know if this will help, but I'm on Aimovig. Are you give yourself a shot in the stomach once a month and it has been my lifesaver. I've had headaches since I was 10 and I'm now 37 and chronically I'll as well.

  • Your so cute Mary calling yourself a medical nerd it's stuff that you need to do on a daily basis, I love your succulents they are so nice to have make a home more homie keep up the great work I admire your strength, Hi Peter and Ollie 😊❤❤

  • I used to LOVE goobers!!! Did you like the grape or the strawberry?

  • That is so cool! My dad drove for GreyHound buses for years. Then was a tour bus driver. Who knew! Crazy world.

  • I watched that movie five feet apart and I didn't know that you get a lung transplant n you're still not cured from the CF wish it was for all cf

  • Mary, you obviously have inflammation in your sinus, do you rinse them really well every day? I don't know how antibiotics would help swollen sinus. They are probably not infected, they're just inflamed, maybe from tree and grass allergies, dust or dander. In the basement or outside you need to wear a mask.

    I also got a headache every afternoon from sinus inflammation. Now I take a prescription nasel spray and mucinex DM at night, really helps. Plus I rinse 3 times a week with natural salt and herbal Alkohol rinse (trademark). If you have a CF infection in the sinus, then ok I can see for the antibiotics, but the Dr. Didn't even examine you, so how do you know? Oh well just throwing some things out there. This time of year many people have sinus issues. Be well soon my dear.

  • Just curious about taking the Tylenol. Since your liver isn't working properly doesn't the Tylenol make it worse? Just wondering. My brother is currently going through the process for a liver transplant and one of the main things is for him to stay away from acetaminophen. It seems is would be hard for your liver to process it. (However, my only knowledge about CF and liver problems is from your channel, so I'm not up on this) lol Just curious, no judgement!

  • Mary, I hope I have as much luck with my little succulent plants in my bay window as you do!! I just got them but honestly, I’m CLUELESS as how to care for them. Trial and error I sapossen.

  • I love every succulent update. I want a video of just all your succulents and what you call them as in if you know their real name….or if you have funny names. I have one I call lil mama cause ALL IT DOES it make a million babies lol

  • Practice up on your "y'alls" for your move! 😁

  • Wow.. married life.
    Oh.. in Oregon plastic bags are outlawed.. so we carry in our own reusable bags. Cloth etc.

    Am in Mexico City on ministry trip.. so tired.. came at the last minute while in Los Angeles.

    Hope the work on getting ready to move is ok. I lived in NC 20 yrs. you May love the beach.. lots of lakes and the like to swim or picnic .
    I got my MFA at Carolina. If I can help let me know.. Jim Waters, [email protected]

  • Thumbs up when i saw the lunch box 😂❤

  • It was nice to hear about your morning routine. Mary I hope the headaches start to be not everyday. I thought of you last night as there was a CF women on So You Think You Can Dance yesterday at the end of Monday's episode on Fox.

  • Mery has a defo succulent addiction 🌿🙂😍👩🏻‍🦰…

  • Haha Peter is already saying y’all. Love it!

  • I love this channel so much. You guys have really helped me be more proactive about my health. I have a lot of chronic illnesses. It started when I had a stroke as a baby. And since then every year or so I get a new diagnosis. This year it’s been hyperthyroidism and osteoporosis. I’m on so many medications and for a long time I was angry about things and not taking care of myself but when I started watching your channel I realized that I need to take better care of myself so my life can be better even with all these illnesses. Thank you so much. You both are awesome.

  • Saw you guys no, heard you guys on the radio. Great interview, thank you.

  • My medical issues are very much different from yours but I understand about taking pain meds, or rather NOT taking them to see if your body is going to behave or not. It's a wicked gamble: such gratitude when you feel good and such a disaster when it doesn't. Riding that roller coaster with you in my own way!

  • So love the lunch bag ! ❤️🇨🇦

  • It is the best feeling when you get all that mucus of your lung from the morning. It’s like freedom

  • id imagine your move shall bring a bunch of lovely new subscribers!

  • I loved Peter's DIY segment! 🙂

  • Have you tried acupuncture or therapudic massage for migraines?

  • The necessities like Dr. Pepper! Love it

  • Mary was "out of spoons". Do you ever use that saying for being completely exhausted? I use it all the time. #spoontheory #spoonie

  • Peter and Mary are completely relationship goals!!! 1,000,000%

  • Getting ready to move to the South with that “Good night, y’all.” We can’t wait til y’all come!

  • you could use tea bags to stain things as well and then its also natural and coffee will do it as well and not toxic smell either

  • Love you guys! 🤟🏼♥️

  • I'm really struggling today, and thankful for the encouragement from you guys, and hoping if you see this that you feel the hope and encouragement being reciprocated back to you guys.

  • Try the whipped cream cheese on wheat thins.

  • I'm on a mini-bagels-with-whipped-cream-cheese kick too! I put a big pile of fresh blueberries on mine.

  • Good luck moving to North Carolina Peter and Mary

  • Love the sign, Peter, and I'm sure your friends will treasure it! You are also quite the artist. Mary, you must slow down to prepare yourself for the busy days when you can't take it easy.

  • Baby bagels rock

  • Good night “YALL”

  • Every one of your vlogs has helped me so very much!!! I watch them over and over again…I so admire your strength, inspiration and teamwork as a couple.. and love Ollie Boy.. 👍😊❤️

  • Here is a saying that I started using “Pray and faith to make it today” And yes Mary and Peter Frey you can use this saying.

  • I get a headache every afternoon with doxycycline! It’s weird I’ve never known anyone else who got the headache!😀😏❤️

  • Peter & Mary, what machine do you use to print decals? Any info will help, thanks in advance- Sarah

  • Not sure if things are different with CF but generally you should not get a fever on antibiotics. 5 days in with fever tells me as an RN that they are not working.

  • Peter, you need a tripod or something in your car. I know in FL you would be pulled over. Be careful

  • Cleaning a purse with carpet cleaner? 🙂

  • Peter has so many talents! That sign is so cool.

  • As I was watching Peter make that sign it reminded me of that website which has sponsored you guys a few times where you can take classes. But I can't remember the name of it

  • Mary, there is a young woman with CF that just made it on So You Think You Can Dance!!! I am sorry, I forgot her name. Bringing awareness to CF!!!!!! We all need to cheer her on! Monday nights on FOX!

  • Ask a nurse or your doctor……a nurse told me for bad headaches take a Tylenol and a benedryl……works like a charm

  • You guys should do a Boston meet up before you leave!!

  • Completely agree with the soap container!!!

  • TAKE the Tylenol every day! If you can alleviate pain, do it so you can use your energy for other things.

  • Oh my goodness Mary my husband works for Holland Bus Company which handles Blue Bird school buses here in Holland Michigan!!

  • I can say I officially watch yaallls vids for a year

  • I just love you guys! I think you are such beautifully talented people! I am always thinking and praying for you both 🥰

  • 💜💜💜

  • Ughh when I have a migraine, and I cough or gag ( usually throw up from the pain ) it makes my head hurt SO MUCH WORSE😭 hope you get better sweet girl ❤

  • Setting or interval

  • Mary do you know Jose Navarrete from the Navarrete life? I think it would be awesome if you guys ever met. He has CF and just received a double lung transplant 4/25 he is doing well ❤️This is a terrible desease and I pray they find the cure for it very soon. God bless you and never give up!

  • I DO KNOW THAT MOST NOT ALL BUT MOST MEDS TAKE LIKE A WEEK TO WORK ON YOUR BODY

  • With your liver disease, how can you use Tylenol? Advil or Aspirin?

  • 💜xx💜xx💜 Hugs & Kisses sent with Much L💜VE…..!!

  • https://youtu.be/qj4CQXMKIZ4

    Habt ihr den Film gesehen ich möchte denn unbedingt angucken was haltet ihr davon? CF gut dargestellt oder ehr nicht so?
    LG from Germany😉

  • Jen in FL here..I just realized I love ya girl ..yet u could NEVER hang around me.. for some crazy reason I have the lowest immune system in the world and I'm a school nurse so imagine that I am always sick so I can never even be around you and risk you getting sick…but I am glad I found u on YouTube.i watch u 3 everyday.. and as for the Tylenol I suggest you use it as preventative way out pros and cons…you need to clear your airways and at that point you risk having that headache. I would say for another 5 days anyways Tylenol preventive method. When we have someone in pain in the we don't wait to see if they're in pain we continue the painkillers throughout the because sometimes if we stop them it's too hard to come back once they're in pain. So we try to stop paying before it happens.. so for now I would suggest you see the Tylenol as your pain management

  • awesome channel awesome vids

  • I was surprised to see the yoghurt because I saw the new Chobani containers yesterday in Kroger & the old ones were $0.59 per container. They expire June 27, and I bought almost all of them. 😂

  • Every time I see a succulent I think of Mary!

  • Love you guys 💕

  • Do you own the house you're in now?

  • Mary, I would be interested to know what your Vest settings are. I usually only use mine for 30 minutes at a time but wonder if my team of doctors would think a longer session of 1 hour would be beneficial to me. I would love to share your settings with them and see if they think that yours would work for me.

  • Please do a video as soon as u wake up and show us what happen when u wake up x

  • You need a little stall selling succulents

  • Do you miss each other when you are apart?

    On the rare occasions that we are apart (we both work at home now), we still miss each other.

  • Oof I am lucky

  • you guys have made c.f. so much better for me and my girlfriend she worries about me alot and your channel has taught us so much and we are so thankful for your channel you two are awsome !!!

  • Use recyclable bags be mindful don't use plastic bags lol 🙂

  • Will you be on antibiotics for the rest of your life?

  • I guess the worst part of having a critical illness is that one tends to feel the disease runs your life!! Blessings to you both.

  • Love bagles with whipped cream cheese. One of my go to foods.

  • Soooo many plastic bags! Whyyyy??

  • why not just hire someone to clean your new house top to bottom before you move in? less work for you, less stress and well worth the money. splurge and give yourselves a break.

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