FIRST TIME MISSING A DOSE OF TRIKAFTA! 😱
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- Опубліковано 14 кві 2020
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It happened...after 8 months and 10 days... but alas, we move on and keep on going💪🏻
Why not just take them out of the package and put them in with your other medicines.
The morning dose is the more critical one. It has all three meds in it. The night time dose is just a booster of the ivacaftor. Lots of us don't take the night dose. So kinda good news on that.
My friends husband is highly allergic to poison ivy, and he discovered that hand sanitizer stops the spread, after removing soiled clothes. For the itch, benadryl and cortisone cream.
The Frey Life I take my evening meds then watch your vlog then I go to bed so I have a trigger mornings worse I take 14 and I don’t sleep well so I have to set alarm as never know what time I’ll wake
Mary, cf has not slowed you down. I think you two complement each other. When You wait for God to help chose your mate you cant go wrong. I have missed a heart pill so we are just normal. God bless you both
I have a friend who would give her cat a treat every time she had to take meds, and on the cupboard where the meds were stored was a little bell. So the cat picked up pretty quickly that at that time, the bell should ring and she needs a treat. It worked pretty well!
I typically set an alarm on my phone every day at the same time and have my SD Trinket grab my meds for me ❤️ it keeps her fetching fresh and helps encourage me to take my meds on time
Wow - both are great ideas!
14Raine14 thanks for sharing, those are great ideas! & how clever about the cat treat and bell!
@@thefreylife eeeee I feel like I've been acknowledged by a celebrity 😍😊 I hope you and Peter are staying safe, be sure to give the HairMan and Bonesy Boy a squeeze for me 🤗🤗🤗
LOVE Ollie at the end. “Wunna day good night” *no interest* “Wunna go for a walk?” *JUMPS up!* so cute.
For those reactions i always make sure to wash all the clothes/sheets whatever that came in contact with you when you think you touched it. My doctor told me it doesnt spread from touching the rash it spreads from the oils from the plant so make sure theres none around your house! Amd calamine lotion of course
It had to happen sooner or later. I doubt anyone will be perfect (as far as remembering to take meds every single time). Hope all is well. That drainage system is IMPRESSIVE! Looks like a lot of work.
Peter, take Benadryl for the inflammatory reaction and put Calamine lotion on it for any itching!! Hope this helps!! Love to all from Lake Placid, Florida
cimogm - I like to use hand sanitizer on skin reactions because it really stops the itching!!
There's a Benedryl cream too. I don't get poison ivy, but my mom does. Hydrocortisone helps too.
cimogm It’s weird because I had a dr tell me that scratching the blisters will spread it on you and other people, that the blistered contain the poisonous oil. A simple google search will tell you different it’s crazy that a DR would spread that kind of misinformation.
I think you need to get Hairy a leash. Many of my cats enjoyed following along on our dog walks. It was quite the procession - 3 dogs and 3 or 4 cats. The cats would appear out of the bushes to follow along ahead of, alongside, or behind the dogs.
Oh, how CUTE! I would have loved to see that. :)
Margaret Mumaw that sounds like a party!
I sometimes would take my cat to the vet with her leash and people couldn't believe it. She loved it because she hated the cage.
@@carmenwelty9924 I used to have a cat that walked on a leash. When we would travel we would take him with us ad when we stopped at a rest area we would clip on his leash and take him for a walk to go potty.
I have watched you for so long that I feel like we are friends even though you have no idea who I am. Lol. I’m probably about 2 hours from you and I make sourdough bread, I so wish I was close enough to share some starter with you. I totally get the forgetting medicines. Three of my seven children have a very rare autoimmune disease and my son takes meds 6 times a day. The struggle is real! Hope you are having a wonderful day.
You might want to get another pair of gloves, Peter, as the oil is probably on the gloves. Great video:)
As I get ready for bed, I start my youtube shows. You both were my first family that i ever followed. So each night i start with your vlog. And it always reminds me to take my meds. So thank you for the daily reminder!
I have forgotten to take my meds also! For poison ivy when my sister had a very bad case, we put charcoal powder in Vaseline and put it on. Poor girl had it in her face and she was a sight! But it really helped!
To help me not forget to take meds especially more then twice a day, I set a timer. I did realize that at three when I watched this, I had forgotten to use my inhaler at twelve. I did do it since it wasn't that far off. I recently was diagnosed with asthma. It kinda does make sense what I was experiencing but never thought about that.
Peter, don’t scratch the area as you can spread the oils along wherever you scratch, including touching your face and eyes. You should shower as soon as possible. Put all the clothes in the wash. As someone else said, wash the gloves. It may have also gotten on Ollie’s coat, so it might be worth shampooing him, or you could recontaminate yourself from the oils on his fur. Get some Benadryl cream to apply for the itch and reaction, and even use some of Mary’s oral Benadryl for the itch at night. However, it often doesn’t do much. You may need to get some Hydrocortisone cream, and maybe even a script for oral Prednisone if it spreads and worsens.
8months and not missing a dose lol if I went a day without missing a dose of meds I'd celebrate . Your q gift Mary truly .
Makes those flowers pop! Had me cracking up Peter!
Hi Mary & Peter, I’ve enjoyed watching off and on for 3 years. Teamwork is the keyword with CF and you are the definition of that. I have been getting some depression side effects from Trikafta and it can get pretty “dark” at night. What I mean to say is when these feelings pop up, I’ve been putting on some of your videos. It helps, thx. Helps me know I’m not alone..and of course I’m not. 😀 CF @ 50 in July!! Pat on back.
Mary and Peter (and fury/no fur friends) I am a nursing student, and sometimes when I work or volunteer with children a cool trick I have showed kids to remember their medicines and also be creative at the same time is a trick I actually learned as a child from my dad for outdoor survival... For survival you bring strands of thread with you in your pack if outdoor hiking or adventures and if lost you can monitor the distance you have gone so far by creating knots in the threads for equal distance marks that you have accomplished that way you can keep track, but for medicine I told the kids that they can do the same but by making knots I the thread for each dose they successfully take and at the end of each week add the threads up together and create some cool personal bracelets.
"Quarantine house" is a real thing. You guys walked into the house and right past the hanger on the floor! Lol. I look around my house (I've been home three weeks) and feel like I'm in the Twilight Zone. I've also been trying to bake bread from scratch... not so much! Time to bring back the bread machine. Instant pot is out, Ninja for smoothies, dehydrator and various stages of vegetable and herbs starter plants. By the end of this, I will be buried somewhere in my house! Thanks for the great video
Ollie: “ Walk.....did somebody say walk?” From horizontal to vertical in 1 second! LOL 🤣 Your azalea bush is absolutely gorgeous Mary & Peter! You are going to have a lovely backyard when all is said and done. I take 5 pills every morning at the breakfast table. It is so much a part of my everyday routine that, occasionally, I question whether I actually took them or not. It doesn’t happen often, thankfully! Harry must have heard you coming back from your walk that is why he was waiting at the door. He missed you. Take care and stay safe! 🤗❤️❤️🙏🏼😘🐕🐱
Beautiful flowerbeds!! Yummy looking meal Mary 😋 were still getting snow....
Been watching you two for 3 years!! Mary I can't believe the difference in your health in the last 6 months!!! Wow hopefully we will get some meds I need to leave this house!! Lol
I have used Ivy Dry with success in the past. My mom used to make a paste of baking soda & water. She also taught me this rule when identifying any type of poison pertaining to the leaves....if 5 let it thrive & 3 let it be. It works! My Grandma used to make homemade soap & if I thought I had gotten in a patch of poison I would rub the soap on arms as soon as I came inside. That really worked! Kept me from getting a breakout of the rash! Good luck!
BTW Ollie & Harry are precious fur babies! Well...1 with no fur is precious too!
I HIT THE LIKE BUTTON BEFORE EVEN WATCHING IT .(2 OF MOST BIG KINDHEARTED HUMAN)
I HAVE EVER SEEN IN MY LIFE
AND I HAVE SEEN SO SO MANY PEOPLE.
FROM LOS ANGELES
Mary and Peter y’all are amazing!!!
My daily meds are mostly once in the AM and a single drug in PM. They’re in a pill sorter on the edge of my dresser with my bottle of water. I have to walk by the pill sorter every morning when I leave my bedroom so it’s right there where I can see it, with the bottle of water ready. My evening rx is harder to remember since I don’t usually take PM rx.
I have CF, too. The way I remember to take my Trikafta and other meds I put in my room. But I put them on top of my medication shelf. Love you guys and can't wait till your next video👏
Hahaha. Harry was happy you were home, but didn't necessarily want a hug. I love him. His eyes are everything. 😂
It’s cold here in Illinois and not only that but it snowed a little, boy, when will it ever end! I want to get out in my flower garden and make it pretty 🌸🌼🌹🌻🌺 love you guys have a safe and wonderful day ❤️😻
That azalea looks SO happy in your yard!
Apply an over-the-counter corticosteroid cream for the first few days.
Apply calamine lotion.
Take oral antihistamines, such as diphenhydramine (Benadryl, others), which may also help you sleep better.
Soak in a cool-water bath containing an oatmeal-based bath product (Aveeno).
Place cool, wet compresses on the affected area for 15 to 30 minutes several times a day.
@Cindy Brannon no I'm not I looked it up
Your flowers are beautiful!...Stay Safe & have fun guys! Thanks for sharing. God Bless.
Leaves of three, reddish when new. Make sure doggy doesn’t have it on him, you will pet him and get exposed
When remembering my asthma medication, either I will set a timer on my iPhone for four hours or I will make a notation in my notes on my iPhone.
Y'all are the cutest!!
Biggest thing is getting the oil off and dawn dish detergent is awesome and cheap for that then hydrocortisone to chill the reaction. And was all the clothes you were wearing when exposed because they have oil on them too. Was them with a small squirt of dawn added to help remove the oil too.
Whew! I get exhausted just watching ya’ll. That Azalea 🌺 bush is gorgeous. We had them when I lived in Atlanta. (& I used calamine if it itches, Peter.) Stay well. 💜
Peter is working hard and your flowers are very pretty. Delicious dinner!
Thanks Joyce! :)
Tecnu is amazing to get the oil off, but not great after you've gotten in. Domeboro soaks help the itch after!
I set alarms on my phone as a reminder. Morning and night. You only forgot once in all that time! That is really good! I forget way more often than that even with my alarms. Sending hugs!!
For the rash mix, aloe witch hazel and vitamin E (just the gel from the capsule) it’s amazing)
Benedryl spray helps with the itch and washing with Aveeno oatmeal soap helps the irritation.
After working in the yard or being in any wooded area I always take a shower asap. Before you start the shower get a towel and some white vinegar. Soak the towel and scrub you entire body. Be very generous with the vinegar. It will cut through the oils and then you can shower like normal. You and the shower may smell of the vinegar for a little while but it is totally worth it!!! I used to get horrible rashes but have only had 1 in the last 5 years and that was when I forgot to use the vinegar. Good luck!!
PS, take care you two and hope your wrist feels better. You both made me laugh today. Happy Wednesday 🌞🌞🌞🌸🌸
For your wrist rash you can try Hydrcortizone (I usually use the one with aloe). I use it on my Mast Cell flair ups all the time.
Power clothes soap and scrub brush. Wet lightly the rash, sprinkle/ cover with powder cloth soap then rub with a scrub brush for 3-5 minutes. Repeat until rash is done. If you don't mind a little pain then try it.
Mary, have you tried the Pillboxie app? I find it so useful for all the meds I take. We don’t get the poison ivy type plants here in the UK, but would a Benadryl help calm down the reaction?? xxxxxxxxxxxxx
I love it when Hairy "talks"!
When I came to the site tonight, I noticed I had been "unsubscribed". Has that happened to anybody else? I certainly did NOT unsubscribe! ????
Hey, question. I ordered a Have Courage hoodie about a week ago and I still haven’t gotten an email about it getting shipped; usually when I order clothes from your online store I get an email about it getting shipped within a few days... but so far I’ve received nothing.... I was just wondering if you’re still shipping clothes during this time? 😊
I keep my combler in the kitchen, that was I see it in the morning and nighttime. My husband and I check behind each other also. Love you both.
For allergic reactions on my skin I wash it with natural soap and then tea tree oil or that oatmeal stuff as well as taking some Benadryl
yep alarms on phone i have a hormone patch to change every 4 days then a pill for 10 days every 4 weeks.
I have a timer that goes off at the same time each day because I am on a time-dependent medication. It really help when life gets in the way or if we have people over.
Bella B that's a great idea!
Bella B that's a great idea!
The "southern" remedy would be to apply kerosene but I'd recommend Calamine lotion.
😂😂😂 Thanks Susan B! :)
Looks nice there. We have snow on the ground in Illinois.
make an oatmeal bath I’veto gotten an issue rough like that before an oatmeal bath really help
Adam thanks for the tip!
You 4 just make me smile. ❤️
When I took medication daily, i made myself a little chart and would check off on the chart if i took my meds. I also kept them in one particular cabinet and the chart was on the door. My dad on the other hand, takes several meds daily and he's taken them for so long that it's literally a routine. (For dad it's like: Eat dinner, wash and put up dishes, take meds, watch news, ect)
I have linked Meds and teeth brushing before to help me remember. Or if it goes with food it can be remembered with eating breakfast and tea. What messes me up is if i have ones that need to be an hour before eating or 2 hours after. I have set alarms to remind me to take afternoon meds and then muted the alarm and got distracted on my way to take them.
Skin reaction - . antihistamine if you can get it, plus touching the skin with the back of a spoon that has been put in boiling water. Tricky to do to not burn yourself, but it does seem to work if you can get the timing right. I got bit by horse flys once and had a superbad reaction, and the spoon trick was the only thing that kept me from tearing my skin off.
The medication alarms are my go to!
For Poison Ivy or oak/ sumac etc. best treatment is 5:1 water to Clorox. Dab on 4-5 daily. Will dry it up and usually gone in less than a week. Also Mary, I have learned the value of missing a pill from time to time. You never know when your prescriptions will be filled late or whatever. With this virus issue, I couldn’t see my doctor for a week or so and I’m on a drug that will cause withdrawal symptoms. Since I had missed the occasional pill, I was able to stretch it out until I could get my new meds. God always provides and has a bigger plan than we can ever imagine.
I set timers on my phone twice a day daily and I also have a pill box which is twice a day so I can look and see if I’ve taken it if unsure. I also keep my meds near my bed so it’s right next to me when I wake up and go to bed
I do forget to take my meds. It usually 1 or 2 times a week. I take it at 10:30pm. I always have my pill box in my purse. Just in case I am not home and I want to take my meds early. The earliest I can take it is 5pm and the latest is 11:30pm. I take carbamazepine. It is for my seizure disorder.
Straight bleach compress on that denatured the itchy chemical and shortens recovery time. I doubted it and was afraid but it has worked really well for me every time. If compressing is too scary, just scrub it with a paper towel with straight bleach and wait till it burns and run it under water. You will have to do the scrubbing more often than the compress for it to work as well but I was so glad someone told me about it because when I get a poison anything rash it will take me at least 2 weeks of suffering and most often a whole month because the blisters pop and it would spread.
Swab it with ammonia. I always use this. Takes the itch and sting right out of it. I've even used it for jelly fish stings.
If it is sumac you should wash area with Dawn antibacterial liquid soap, or any antibacterial soap, than wash with 1 to 1 bleach and water, scrub to break the bumps and blisters to let out the oils. Spray with Band Aid calamine spray, do not cover it. Use antibacterial soap, bleach and calamine spray every day or more if needed.
I make a paste of baking soda and water for rashes from plants.
For the poison plants growing up my brothers always just used calamine lotion. I got lucky and never had any reactions to them, but I would totally give that other stuff a try. Also, I know for one of them that the "antidote" plant grows nearby. I just can't remember which or what it looks like. Might be something to do some research on?
you can also take backing soda and make a paste it also works for bee stings
The best thing to do is make a paste of baking soda and water, lay it on that area and cover lightly. I use the tube part of a sock with the foot cut off (because I always have socks coming up with holes in the toes or heels)
We have twin boys (9) on orakambi at the moment. Can’t wait to get them on trikafta, but it’s only approved for 12+. I’ve been following you for a long time now. Very glad to see your doing well. What type do you have? The boys have DD508. You can see them in the old video I made with creon that they wouldn’t take by mouth. Keep up the good fight, we are with you!
You can use oatmeal soap to help or calamine lotion
Benadryl gel and calamine lotion are great!
I only take one medication most days, I keep the pot by my toothbrush then move it to the other side of the tap once I've taken it that morning. I then have to remember to put it back that evening or I will think I've already taken it the following morning!
I have meds to take at lunch and dinner time for acid in my blood something to do with my kidneys then another one of preventing urinary tract infections which I'm prone to getting then another for low iron and many other medications I'm on at least 6 different meds if not more so I understand the struggle
I am on meds in the morning and in the evening and my tip to remembering is to set my alarm for 6:00am for my morning meds and then I set a reminder on my phone for my pm meds. I don’t have to take my pm meds at a specific time so if I miss taking them at 6pm then it’s no big deal. Just as long as I take them before going to bed. My am meds are a different story. I need to take them at the time I set it for. I chose 6 am because I would normally get up for work at that time. Since the quarantine I haven’t been working. I still maintain the 6am med time because I know when all of this is over and I go back to work I will need to remember again. I was always told that if you come in contact with a poisoned plant to put calamine lotion on it.
I also set an alarm for my evening meds. Morning ones are fine as I take them when making my morning coffee, but I kept forgetting the evening ones. My husband has to take some at 2pm and the same thing, he kept forgetting. So now he has an alarm too. The only problem is if you are out and don't have the necessary meds on you...sigh!
@@ruthm3813 true! So what I have done is I've gotten a combler that just stays in my purse and it's for when I leave the house. Before I go, I put the rest of my days pills in there in case something were to happen and I ended up being away from home longer than expected. It gives me more freedom as well!
My grandmother always used good ol' Octagan Soap,it's the brown soap.Make a paste and put it on,let dry then rinse.I've always used this and it works.Grandma was always right.
I have to set alarms on my phone to take my meds but there are still sometimes that I will be in the middle of doing something like taking a nap cause or I'm having a bad day and I will silence the alarm and roll back over and just not take it. But I will be hating life more when I really dont feel good cause I forgot my meds. But I will go a few months without missing or being late to take them, then I will have a few weeks that I forget them a few times. It's like i got in cycles. Also there is a soap that they sell at CVS for poison oak and stuff like that i have used a few times and it really works.
Hello Mary, Peter, Oliver, Harry. I love your singing Mary, you actually was singing 1 of my favourite songs (Rise Up) ollie & Harry are so cute. Sorry to hear you missed a dose of Trikaftar hope you are alright Mary. Food looks yummy 😋😋😋 xx💕
I try to remember taking my meds by using a cute cobbler. Or my boyfriend who is a Nurse also helps! Also a question for you, I have been having issues swallowing my meds because of gag reflex problems. Do you have a trick to get them in easier or swallow faster?
Greets from Belgium!
I need a combler to! For my 20 meds...it's to many. Just started having trouble rt b4 pandemic remembering. But not buying onw Till after the pandemic🤪
For not i put giant labels on them so the trigger my memory and lay the blister packs flat on the table.
Zanfel wash. Or any wash that "gets the oils off". Wash the clothes to and don't tough it till it's washed or it'll spread
I would try using calamine lotion for the rash or maybe some aloe vera.
after bite really helps for position and stings mary dinner looked so yummy
For allergies or allergic reaction you want to get Benadryl and get you some calamine lotion. Make sure not to let Mary or the kido rub it, bc they could get it. Also dont rub it bc you could make it spread. Hope this helps. If you ever get it on your face go to a clinic to get a shot. Bc its really bad when near your eyes or airway.
Don't know if it works for poison ivy/oak/sumac, but I've found that for wood and stinging nettle, alcohol-based hand sanitizer (I use a spray for this application) neutralizes the sting. For meds, I have to set timers for myself - I don't have to take any of them at any specific time (I try to start them as soon as I get up), but I do have to space them out with specific minimum time intervals, so I set timers for those; thus far, I've gone from missing at least 3 doses a week to only missing 2 doses in the past month.
for the poison sumac/ivy/whatever it is: calamine lotion (pink bottle) and Benadryl
Praise God 🙏🙌🙏🙌 for Trikafta it sure has made a huge difference for you Mary you and Peter are always in my prayers. I ordered my fry life hoddie and I choose joy necklace and the beanie pack I'm so excited to get it when it comes I got them for my late birthday present but the necklace I got cos I was in hospital and I got I choose joy cos I came home on the 8th April. I miss my meds alot
I only remembered my PO abx after watching this, remembered the iv ones. I have alarms on my phone for my normal meds then extra alarms for anything that would fall outside those 4 times. I was bad at turning off my alarm and not taking them, I learned the hard way to not miss meds. I had an involuntary floor nap aka pasted out in a bad spot and could have gotten really hurt.
For me with my asthma inhalers I have to use in the mornings I brush my teeth first then use my puffer and then risen my mouth out(cause i need to rinse after the medication). With antibiotics I have a time every so many hours cause I forget. And my other medications I take for allergies and asthma and migraines I take them before bed before I brush my teeth.
The video “How to never have a serious poison ivy rash again” by Extreme Deer Habit illustrates how to wash off poison oils. Kinda goofy, but really effective in my experience!
Becca B thanks for sharing!
I always have to set timers. Lol I remember to take my medicine... after the time I'm supposed to. Lol.
I have to use a lot of eye drops due to a cornea transplant. I have to wait at least 5 minutes between drops and sometimes it's longer if I get sidetracked. So, I put my eye drop bottles on a mirror. After I put the first drop in, I take that bottle off the mirror. Then I repeat until all bottles come off the mirror. Once done, I put them all back on the mirror for the next time. This is the only way I can keep track of dosing my eyedrops. 🙂
We use (cetirizine) for allergies. And benadryl ointment or calamine lotion.
We always get a product called Ivarest. They have a wash, cream and spray. It works well.
All stop healing gel. I get it on amazon.
Just a question. What happens when it rains and all the run off from the neighbors yard and your downspouts flows into your side neighbors back yard? If I'm not mistaken it looks like it drains out under the fence into their yard? That's everything from your gutters also right?
When I take my bed time dose I set out my morning dose that has one extra pill, in a little cup an leave it on the counter next to the water glass. It's the first thing I see in the morning. The only time I missed a dose was when I was on 2 different medications that were every two weeks. Basically I did them on every other Friday night. One Saturday I realized that I had forgotten to take one the night before. But it was not a problem to take it that night.
Hi Peter (and Mary😄), Try Tecnu poison ivy and poison oak medication. They have a scrub or body wash and a cream. You can get it at CVS or probably at Walmart. My mom lives in TX and she has an area on her property that has poison sumac and she always ends up getting it when it’s time to do yard work in that area. She uses the Tecnu and it works great. The body wash version can be used in the laundry to wash the clothes that you had on during the exposure. Since it’s an oil from the leaves of the plant it can get on your clothes and even when you think they are washed and clean it can still be there and give ya the rash again. Mom found out the hard way with that, now she washes those items with the Tecnu and that works too.
Hope it gets better soon. Love and hugs to you both. 😊
Hi guys!! Just wanted to say I love you both!
God bless you! ❤🤗❤
Put some Cortisone cream on that, take a Benadryl. 😊
I only take 8 pills a day, plus my daily vitiams... I forget sometimes my afternoon / evening meds. 😩
I always have my pill box in a place where I'll see it. For rashes, I've put on anti itch cream on it.
Mary I get certain meds in a bubble pack. The rest in pills in bottles. I’m really careful about taking my meds. The thing that drives me friggen crazy is in the morning get my meds out set the bubble pack down and seeing last nights pills still in the packs