mary, to be honest, i have no physical severe / restraining disease, but im struggling with depression my whole life and with the joy and positivity you live your life you are my number one role model. :) and it already improved my mood problems watching your videos and seeing you handling your life. ♥
Kala Halani that's nice to hear! I'm sorry u suffer with a chronic illness, I have chronic daily migraines, and it seriously hinders my life. it could always be worse tho :)
When I first was diagnosed with RA, I suffered a lot of depression as I had travelled so much before, and I've even lost some friends that were "what you can't TRAVEL with us this year? What never again? How will you survive?" Mary taught me, that happiness can happen at home, in just a trip to the store, even the dollar store. I joke that since watching Mary I watch sunsets. She always is so happy and excited about a sunset. It's not small things, it's figuring out that there are no small things....that so much of life is worth being happy about. I know Mary has helped me and our family. My husband always wants his "Mary and Peter" update!
me too! I do live with chronic and mental illness. but was having a bad day and watching Mary be so positive despite what she deals with cheered me up. I hope you feel better soon to
Peter, it is so refreshing to see a young man so doting over his bride with the most selfless attitude I've ever seen....and Mary, we can tell that you know how well cared for you are when you sweetly thank him for his services. It is so wonderful to see you laugh so often when your life as some bumps in the road that people without chronic illness don't have....Blessings to you both
I am a new subscriber to the Frey Life, I must say that I really admire you both, Mary for taking on CF and showing the rest of the world what daily life is like for you, I am in the planning stages of getting a mediport for my weekly infusions and I really found it beneficial when you share your port care both accessing and deaccessing the port, as well as what it looks like your information is better than many of the UA-cam videos on getting a port, you explain the port in simple terms and I like that! Hope you are feeling better and better each day, glad to see Ollie feeling better, I really enjoyed your vacation to Florida, the drone videos and of course your trips and tips at $ general. You and Peter and Ollie are such a joy to know (even if only through the Frey Life Vlogs). You are one of the last things I watch literally before I go to sleep and I truly enjoy watching you guys nightly. I laugh along with you and cringe when anyone of you get sick or aren't feeling great. Scary time when you got the flu Peter and Mary had to balance being a caretaker and keep herself from getting it!! As you say, good night and see you tomorrow!
I postponed my infusion until tomorrow, because tonight I'm doing something I don't want Benadryl to get in the way of - My aunt and I are going to the Hershey Theater to see the Sound of Music! I'm a huge musical nerd and I'm so excited!! My grandmother passed away when I was 4 (Dad's mom) and all I really knew about her was, she loved Julie Andrews and Sound of Music, when I can't sleep, I turn on Julie Andrew singing and can instantly fall asleep, her voice is so comforting to me.
You two are special, reading the comments it's nice to see how many people you have touched. thank you for letting us be part of your journey. I appreciate it. 😀
you don't need a boxed mix to make pancakes. They are the easiest thing to throw together....flour, egg, milk and a bit of canola oil, and most importantly baking powder.
I'm sorry Mary you had a tough day... But the fact you always take the positive out of the little things... You're an amazing human being. Thank you for keeping me sane and positive when I'm having a rough day xxxx
You just amaze me Mary. Even though you felt really lousy earlier on - it doesn't stop you getting on with life later in the day! Love your positive outlook and it's a great example to many 👍💜
i love your positive vibes you and peter give in your vlogs..mary,you are a real trooper and inspiration to the world in your positive words despite suffering from CF..Awesome you are Mary.
You have me obsessed with the muslin blankets. My husband bought fabric and made me one yesterday and already I'm like I need another in case this ones in the wash !!!! Thank you for introducing me to them and thank you for sharing you always are a bright spot in my day
has Peter ever done a video on being a caregiver I think that would be a really interesting video just to get his point of view being a husband slash caregiver
Shelly Mcdonough I agree, I would like to see a video on his thoughts, worries, just where he is at with everything. It must be really tough on him as well.
Shelly Mcdonough, I can't remember which video it was, but Peter does kind of touch on this when he's trying to find things at the store that might appeal to Mary with her appetite issues, so you may want to scan through some of the past videos... and I think their faith has a great deal to do with the success of their marriage, too. They share those values so naturally...
+IMChrysalis +Shelly Mcdonough I think the vlog you're referring to (if it's the kind of recent one) is "CF HUSBAND FACES GROCERY SHOPPING CHALLENGES" maybe? :)
The way you are always so positive about a lot of things is inspiring. I have spina bifida ( disability that effects the spine ) and I'm in the hospital a lot and your enthusiasm has helped me in more ways I can say.
Mary, if low weight gives you less to fight with, why aren't the doctors in more of a hurry to get your feeding tube in? Wouldn't it slow down you lung decline if you had more weight to fight with? By the way, that was a totally awesome headstand!
Benadryl makes me feel exactly what you were describing. Supposed to help sleep but nope, lol. I have chronic heart and lung issues and I pray to be able to deal with them with the grace and outlook you do💜 I do well most days, but every now and again I have mini melt downs, lol.
The dog toy! My husband is allergic to house dust mites and my son and I have asthma, so that's how we kill off the dust mites in stuffier or soft furnishings! *giggles*
Of course not! I've often been accused of having an over developed sense of the ridiculous, which helps me with my chronic back issues, believe me, so you just made me giggle and Gracie looked at me as if I was nuts!
Im glad you felt better as the vlog went on Mary. and thumbs up to you Peter for making those delicious muffins and beautiful dinner, woohoo, Mary you ate two! and Mary, I love the happy very appreciative smile you gave to Peter when he handed you a muffin. :-) so cute. I know why you were crying Peter, maybe it's the aftermath of cutting the onions! Love and hugs to the 3 of you, see you tomorrow!
Peter just so you know you can still make pancakes with that mix! :) I'm gf n make pancakes n muffins a lot and it's very easy to swap it! depending on what the muffin mix calls for(water only vs milk and eggs ect) you might have to play around with it a bit, some add extra flour but I never did. I actually make a lot of yummy pancakes with oats! you just take regular quick cook oats and toss them in the blender for a min to make oat flour and then add some oil/butter, eggs, n milk! I love making them with pumpkin and some creamer mmmm! I've actually made some pancakes out of cornflakes and hot cocoa before bc that's what we had and I had a craving lol so just a heads up if you happen to want pancakes again and only have muffin mix. :) hope you are feeling better today Mary!! I know what it's like to want to crawl out of your skin and it's miserable! :( praying you're feeling much better today! 💜❤
Sorry Mary that you had a rough infusion day. I've felt that way with my infusions of ivig. From others who have had ivig longer than me say when your immune system is really down/fighting a bug it's harder on your body to accept the ivig. I hope today was a better day. I admire your strength & Peter's strength as well. I use yellow heparin in my port line. I'll find out in April what brand port needles they use because you liked the purple tubing on my port last time I tagged you when I had a needle in my chest, lol
Love stand up comedy. It's so good for the soul to laugh (as you both know). My two most listened to stations on Pandora are stand up comedy stations and Shinedown. If you're ever having a rough day check out their song How Did You Love? or any of them really but that's one of my current favorites. It's about no matter what you say you believe or what has happened to you, the thing people will remember about you most is how you loved others. Just a powerful song. Have a wonderful evening!
I remember how much exercise in general makes you feel good but yoga is like a bonus extra good & relaxed but worked out. I miss being able to do any physical activity greatly. Now off to binge catching back up. I ended a small bit into "rehab house". Not sure why I stopped binge watching. But back to it!
A few years ago I developed a weird reaction to Benadryl that made me feel like there were ants under my skin and I wanted to tear my skin off. It was awful! Not sure if it was the same thing you experienced but if it was I am SO sorry because that was the worst feeling in the world to me. 💜
The same thing happened to me! I haven't touched Benadryl in several years now because of it. I had an allergic reaction to a lotion last year and I just had to use ice and tough it out because I refused to take Benadryl again!
Mary, Glad you were feeling better by the end of the vlog. Peter, I love the longer days. I wish it would stay this way all year. We only lose one hour of sleep for that one night we set our clocks forward so it isn't that bad. Our days are still 24 hours :D
hey I am on IVIG. I often find when it runs to fast I have your symptoms. We then have to slow it down. how often do you have ivig? I have once a month for a 5 day treatment. Enjoy your dinner. yum. thank you for keeping me going in hospital. you both so real and fun at the same time.
Ya fellow IVIG person here. The rate can make you feel sick. My favorite thing is when the rate is perfect and the drugs work and I sleep through the whole thing and wake up kinda refreshed. I call it my IVIG time travel. My nurse just shakes her head at me.
It is interesting how protocols differ. My dd has a tunneled central line, and we flush it with 3 mL of blue heparin once every 24 hours. We only use saline after IV meds or after drawing labs. We were also taught a specific way to scrub the caps: 15 seconds on the end of the cap with a Chloraprep, 15 seconds on the threads of the cap, and 30 seconds of drying time.
I wish I had a man like Peter!! Your an Angel. Nary deserves you. God Bless Mary and Peter and your challenging path. My man doesn't come close to understanding chronic illness and the need for inspiration instead if the feeling of being a burden. My husband is no Preacher but He pretends like he's one. Oh well! xo
I admire how you two seem to find fun and humor even in bad circumstances. I have been living with chronic illness for over 9 years now. my husband works long demanding hours. we really struggle to communicate and find things we can both enjoy with my physical limitations. could you give any advice on how you keep your marriage strong and keep a positive attitude living with chronic illness
Hi guys. Could you show a snippet of how Ollie does some of his service work like when he brings Mary her Meds. I did see him put his paw on Mary when her blood sugar was low which was amazing. 🐕🐕🐕
When I take Benadryl or Reglan I feel like crawling out of my skin. It's the most insane feeling ever!! And I sing your "life with a needle in your chest song" all the time since I have one in 24/7 for TPN. It's a catchy tune!
Im so sorry you are having a hard time with the IVIG's this time around :( I completely know what feeling like you want to crawl out of your skin from medication you unfortunately have to take, and its not fun :( Always keeping you guys in my prayers :) Thank you for being you!!!!
I subbed to your channel not too long ago.. a girl close to where I live named Libby recently passed away after her new lungs went into rejection.. I want to learn more about CF.. and bring more awareness! So excited to follow your story
I looked up your other video, Wishing I could crawl Out of My Skin, but I guess that time it was from something different. I'm sorry to hear that you feel like that again! Feel better!
That onion cutting!! Haha I find it easier if you split the onion with the stem going in half so each half stays intact, then make slices not all the way to the stem one way, and then cut the other way. Perfect cubes!
My first round of IVIG made me feel that way. I remember telling my doctor when he checked on me that my head was "buzzing" and I still had two hours left to go on the infusion. And of course the Benadryl adds another element of feeling weird. Hope you're not feeling it today!
My daughter is gluten free and learned to cook using King Arthur brand. It's hard to find really good gluten free carb mixes. This brand is exceptionally good!
hang in there,Mary. you are such an inspiration to me x and I'm sure many others. always keep that pretty smile and positive attitude. much love to you and peter. oh I can't forget Ollie boy. ;))
Hope you are feeling better Mary!..Happy to see Ollie is feeling better :) ... I just found out my cat ive had 10 yrs has a tumor of the jaw bone :( there is nothing that can be done....I took her to another vet for a second opinion...but alas the same news :( ....now im craving muffins!..your vlogs always make me hungry! :)
I hope you are feeling much better after the IVIG infusion you did. Now I'm craving pancakes for dinner. I need soft stuff until I have some dental work finished out. I have been struggling with various infections for months--now dental from secondary Sjogren's. In pain and exhausted and afraid.
The first homecare company I used had me do a yellow heparin after each infusion (3 days a week), my current homecare company out of my children's hospital has me do a blue after my infusions (which are now daily and before they were daily they had me flush with a blue if I was accessed but did not infuse that day) and I only use a yellow when deaccessing even if I get reaccessed a few hours later
I used to use the yellow heparin daily and was told blue was for kids and shorter lines. They wound up turning my blood to soup and my line clotted after a year and a half anyway. I couldn't draw back to take it out either. It's now listed as an allergy, and my new port is made from material that repels blood and tissue and has a Groshong type valve on it so I don't have to be accessed every day. When I had the old one after I was taken off heparin locks, I had to flush every 24 hrs with saline, but my new port doesn't allow blood to enter the line unless I draw back due to the valve. I actually get blood return now lol.
i just got out of the hospital for an outpatient upper endoscopy. They found nothing but I am chronically ill by vomiting. Here's hoping the biopsies give an answer or the doctor had another suggestion.
Ashlein Love If you haven't already had one done, I would ask for a gastric emptying test. Sometimes vomiting can be caused by your stomach not emptying well enough. I hope they find the cause and you feel better soon!
kassandramarlene13 thank you and i think that is the next step once the biopsies return. He wants me to think it is just anxiety but he even admitted before he didn't think my stomach was emptying right.
oopsie! it wasn't auto correct. I call mine "hubcap" instead of husband. lol.... He even answers to it after 30 years hahahaha I just didn't pay attention to it as I was typing.
im sick today and watching you laugh is making my day! love you guys :) i love that pancake mix I'm glad to hear that the muffins are good too !!!!!!! peater you out did your self mary is so lucky to have you!!! p.s you are getting stronger or more confident when you are doing yoga merry!!!! :)))
If you ever wanna make quick pancakes, use 3 eggs, 2 mugs of milk/water/almond milk and 2 mugs of flour (use gluten free mix if you want, I do too =) ) plus a little sugar if you want to and mix it together and you've got pancakes like my grandma used to make them! =) ((I always use middle sized coffee mugs to make measuring easy, the size doesn't really matter it just depends on how much batter you wanna have, and liquid and flour have to be in equal proportions; or if you use big mugs just use more eggs so the colour looks kinda yellow like normal pancake batter, cause the eggs really create the pancake flavour.)) Lots of love from Germany :)
Yeah I use a yellow heparin once a day in an unused lumen :) But most hospitals inpatient opt for a blue heparin every 6 or 8 hours instead. But the less times you access your line the better for infection control so hh does yellow for me
Mary, did you push the Benadryl via your port? I'm a nurse and Benadryl is one of many medications that can cause a "feeling like you need to crawl out of your skin" reaction if you push it too quickly. Patients often describe it in almost those exact terms. I find pushing it VERY slowly helps. If it wasn't the Benadryl, perhaps the IVIG can cause a similar reaction.
Hi B Rie. I was referring to how she takes the Benadryl. I see that she takes it for the IVIG, but regardless of why a person is taking Benadryl, if you push it too quickly (i.e. deliver it via IV very rapidly), the Benadryl itself can cause the crawling out of your skin reaction. Hope this helps!
i flush with blue daily after my hydration is done not every 8 hours though. and use yellow before deacessing. interesting how others do it differently
Hey guys, you may not see this. Im new to your page. I've been watching and trying to catch up. as someone who has a genetic condition herself, I just want to say how inspiring you are Mary. I really enjoy your vlogs. thank you guys for sharing with us! I had to comment on that's why I'm because I happen to be a pharmacy technician and I work for a home infusion pharmacy, IVIG is what I do. also and by the way thanks for mentioning about shopkick. I started using that app pretty cool and I'm having fun with it! Have a great day! :)
mary, to be honest, i have no physical severe / restraining disease, but im struggling with depression my whole life and with the joy and positivity you live your life you are my number one role model. :)
and it already improved my mood problems watching your videos and seeing you handling your life.
♥
Kala Halani that's nice to hear! I'm sorry u suffer with a chronic illness, I have chronic daily migraines, and it seriously hinders my life. it could always be worse tho :)
When I first was diagnosed with RA, I suffered a lot of depression as I had travelled so much before, and I've even lost some friends that were "what you can't TRAVEL with us this year? What never again? How will you survive?" Mary taught me, that happiness can happen at home, in just a trip to the store, even the dollar store. I joke that since watching Mary I watch sunsets. She always is so happy and excited about a sunset. It's not small things, it's figuring out that there are no small things....that so much of life is worth being happy about. I know Mary has helped me and our family. My husband always wants his "Mary and Peter" update!
me too! I do live with chronic and mental illness. but was having a bad day and watching Mary be so positive despite what she deals with cheered me up. I hope you feel better soon to
especially the dollar store, lol!
I agree with your comment.i had a hard day and your video made me feel better
Forever procrastinating studying for finals by waiting to watch the vlog first :) Thanks for being a great distraction!
I got my smiles for the day in while watching you two smile😘
Peter, it is so refreshing to see a young man so doting over his bride with the most selfless attitude I've ever seen....and Mary, we can tell that you know how well cared for you are when you sweetly thank him for his services. It is so wonderful to see you laugh so often when your life as some bumps in the road that people without chronic illness don't have....Blessings to you both
I am a new subscriber to the Frey Life, I must say that I really admire you both, Mary for taking on CF and showing the rest of the world what daily life is like for you, I am in the planning stages of getting a mediport for my weekly infusions and I really found it beneficial when you share your port care both accessing and deaccessing the port, as well as what it looks like your information is better than many of the UA-cam videos on getting a port, you explain the port in simple terms and I like that! Hope you are feeling better and better each day, glad to see Ollie feeling better, I really enjoyed your vacation to Florida, the drone videos and of course your trips and tips at $ general. You and Peter and Ollie are such a joy to know (even if only through the Frey Life Vlogs). You are one of the last things I watch literally before I go to sleep and I truly enjoy watching you guys nightly. I laugh along with you and cringe when anyone of you get sick or aren't feeling great. Scary time when you got the flu Peter and Mary had to balance being a caretaker and keep herself from getting it!! As you say, good night and see you tomorrow!
I postponed my infusion until tomorrow, because tonight I'm doing something I don't want Benadryl to get in the way of - My aunt and I are going to the Hershey Theater to see the Sound of Music! I'm a huge musical nerd and I'm so excited!! My grandmother passed away when I was 4 (Dad's mom) and all I really knew about her was, she loved Julie Andrews and Sound of Music, when I can't sleep, I turn on Julie Andrew singing and can instantly fall asleep, her voice is so comforting to me.
Sarah Van Orden hope you're having fun! I love The Sound of Music!
ReineDeLaSeine14 It was so good!! Just got home and probably should sleep because I have my infusion early in the AM
i love your positivity, seeing the light in each situation is truly a gift. You need to bottle and sell your vibes
You two are special, reading the comments it's nice to see how many people you have touched. thank you for letting us be part of your journey. I appreciate it. 😀
you don't need a boxed mix to make pancakes. They are the easiest thing to throw together....flour, egg, milk and a bit of canola oil, and most importantly baking powder.
I'm sorry Mary you had a tough day... But the fact you always take the positive out of the little things... You're an amazing human being. Thank you for keeping me sane and positive when I'm having a rough day xxxx
You just amaze me Mary. Even though you felt really lousy earlier on - it doesn't stop you getting on with life later in the day! Love your positive outlook and it's a great example to many 👍💜
Funny, we (dutch) people eat pancakes only as dinner. But we make them much thinner and use the whole frying pan surface.
xirisx1988 Interesting! Are they like a crepe? What do you put on your pancakes?
xirisx1988 crepes, so lekker!
xirisx1988 We have those too, but call them Crepes! They are eaten as mainly a breakfast or brunch but some people eat them at dinner
That's funny cause here in Aus we make big plate sized pancakes but the little ones are called Dutch pancakes
xirisx1988 sounds good!
i love your positive vibes you and peter give in your vlogs..mary,you are a real trooper and inspiration to the world in your positive words despite suffering from CF..Awesome you are Mary.
You have me obsessed with the muslin blankets. My husband bought fabric and made me one yesterday and already I'm like I need another in case this ones in the wash !!!! Thank you for introducing me to them and thank you for sharing you always are a bright spot in my day
has Peter ever done a video on being a caregiver I think that would be a really interesting video just to get his point of view being a husband slash caregiver
You two are so blessed to have each other. Thanks for making Mary chocolate chip panmucakes.
Shelly Mcdonough I agree, I would like to see a video on his thoughts, worries, just where he is at with everything. It must be really tough on him as well.
Shelly Mcdonough, I can't remember which video it was, but Peter does kind of touch on this when he's trying to find things at the store that might appeal to Mary with her appetite issues, so you may want to scan through some of the past videos... and I think their faith has a great deal to do with the success of their marriage, too. They share those values so naturally...
+IMChrysalis +Shelly Mcdonough I think the vlog you're referring to (if it's the kind of recent one) is "CF HUSBAND FACES GROCERY SHOPPING CHALLENGES" maybe? :)
not sure my reply to IMChrysalis worked the way I planned, it was meant for you too, so if it didn't go to you too, you can go read it anyway :)
The way you are always so positive about a lot of things is inspiring. I have spina bifida ( disability that effects the spine ) and I'm in the hospital a lot and your enthusiasm has helped me in more ways I can say.
I suffered from pancreatitis for 2 years and understand completely your struggle with food, with that said...you go girl!! Eat those muffins. =)
Peter you are #husbandgoals. you are great at diy, cooking and a true caretaker. im so happy to see such a lovely couple!
I have nothing profound to say, I just wanted to tell Mary and Peter what amazing people you both are. Ollie too of course. You all are so loved ❤
Agreed that Jim Gaffigan is hysterical! So fun to watch you both giggling! 💙
those exercises at high speed are hilarious!! You are such an inspiration to me and I enjoy your updates.
I have been watching you guys for about 6 months and absolutely love it! You guys are a beautiful couple.
Thumbs up for Chef Peter's Sizzle Sizzle Frey Frey! :)
Peter you are a gem of a husband and Mary I'm praying for you!
You guys are so lucky to have each other, you're amazing together!
Love you both❣
I really needed this video today. Thank you for sharing today - you are an inspiration just being you (the both of you).
I'm glad you didn't have a major issue with IVIG! It's good to see that smile, too! Have a blessed evening friends!
Mary- your blankets look so light and soft. Makes me want one every time I see you snuggled in them. LOL
Hugs!! I love watching you guys! Thank you for sharing your lives with us!
I loved watching you guys laugh together in fast motion.
Mary, if low weight gives you less to fight with, why aren't the doctors in more of a hurry to get your feeding tube in? Wouldn't it slow down you lung decline if you had more weight to fight with? By the way, that was a totally awesome headstand!
We sure are worried about you we hope you start feeling better soon! ! We will keep praying for you guys !! All the best! !
Nice husband as always , you are such a champ Peter , May Just God Bless you for all you do.
Benadryl makes me feel exactly what you were describing. Supposed to help sleep but nope, lol. I have chronic heart and lung issues and I pray to be able to deal with them with the grace and outlook you do💜 I do well most days, but every now and again I have mini melt downs, lol.
Try putting the doggy in your freezer overnight. It will kill any house dust mites it might be harbouring xx
Penelope Polins née Meyer 😨😨why would you want to put Ollie in the freezer? or are you talking about dog toy?
The dog toy! My husband is allergic to house dust mites and my son and I have asthma, so that's how we kill off the dust mites in stuffier or soft furnishings! *giggles*
Penelope Polins née Meyer that's what I thought lol giggling. Hope I didn't offend you.
Of course not! I've often been accused of having an over developed sense of the ridiculous, which helps me with my chronic back issues, believe me, so you just made me giggle and Gracie looked at me as if I was nuts!
Penelope Polins née Meyer okay
Im glad you felt better as the vlog went on Mary. and thumbs up to you Peter for making those delicious muffins and beautiful dinner, woohoo, Mary you ate two! and Mary, I love the happy very appreciative smile you gave to Peter when he handed you a muffin. :-) so cute. I know why you were crying Peter, maybe it's the aftermath of cutting the onions! Love and hugs to the 3 of you, see you tomorrow!
i love the way you 2 love each other you are a joy to watch.and Ollie too of course lol xxxxx
Peter just so you know you can still make pancakes with that mix! :) I'm gf n make pancakes n muffins a lot and it's very easy to swap it! depending on what the muffin mix calls for(water only vs milk and eggs ect) you might have to play around with it a bit, some add extra flour but I never did.
I actually make a lot of yummy pancakes with oats! you just take regular quick cook oats and toss them in the blender for a min to make oat flour and then add some oil/butter, eggs, n milk!
I love making them with pumpkin and some creamer mmmm! I've actually made some pancakes out of cornflakes and hot cocoa before bc that's what we had and I had a craving lol so just a heads up if you happen to want pancakes again and only have muffin mix. :)
hope you are feeling better today Mary!! I know what it's like to want to crawl out of your skin and it's miserable! :( praying you're feeling much better today! 💜❤
I was going to comment the same thing! If we ever need to make some quick pancakes we just use muffin mix. Works perfectly everytime!
Sorry Mary that you had a rough infusion day. I've felt that way with my infusions of ivig. From others who have had ivig longer than me say when your immune system is really down/fighting a bug it's harder on your body to accept the ivig. I hope today was a better day. I admire your strength & Peter's strength as well. I use yellow heparin in my port line. I'll find out in April what brand port needles they use because you liked the purple tubing on my port last time I tagged you when I had a needle in my chest, lol
Love stand up comedy. It's so good for the soul to laugh (as you both know). My two most listened to stations on Pandora are stand up comedy stations and Shinedown. If you're ever having a rough day check out their song How Did You Love? or any of them really but that's one of my current favorites. It's about no matter what you say you believe or what has happened to you, the thing people will remember about you most is how you loved others. Just a powerful song. Have a wonderful evening!
awww I loved the montage of you guys while Mary did her vest. you guys are too cute!!
I remember how much exercise in general makes you feel good but yoga is like a bonus extra good & relaxed but worked out. I miss being able to do any physical activity greatly. Now off to binge catching back up. I ended a small bit into "rehab house". Not sure why I stopped binge watching. But back to it!
A few years ago I developed a weird reaction to Benadryl that made me feel like there were ants under my skin and I wanted to tear my skin off. It was awful! Not sure if it was the same thing you experienced but if it was I am SO sorry because that was the worst feeling in the world to me. 💜
Laura & Jeremy
Oh my goodness! That sounds terrible!
The same thing happened to me! I haven't touched Benadryl in several years now because of it. I had an allergic reaction to a lotion last year and I just had to use ice and tough it out because I refused to take Benadryl again!
IV Benadryl is the worst!! It makes me feel really restless and the "ant" feeling as well! I can take oral ok but the IV dose feels yucky....
Oh wow! That sounds terrible! I couldn't stand it!
Mary, Glad you were feeling better by the end of the vlog. Peter, I love the longer days. I wish it would stay this way all year. We only lose one hour of sleep for that one night we set our clocks forward so it isn't that bad. Our days are still 24 hours :D
hey I am on IVIG. I often find when it runs to fast I have your symptoms. We then have to slow it down. how often do you have ivig? I have once a month for a 5 day treatment. Enjoy your dinner. yum. thank you for keeping me going in hospital. you both so real and fun at the same time.
Ya fellow IVIG person here. The rate can make you feel sick. My favorite thing is when the rate is perfect and the drugs work and I sleep through the whole thing and wake up kinda refreshed. I call it my IVIG time travel. My nurse just shakes her head at me.
It is interesting how protocols differ. My dd has a tunneled central line, and we flush it with 3 mL of blue heparin once every 24 hours. We only use saline after IV meds or after drawing labs. We were also taught a specific way to scrub the caps: 15 seconds on the end of the cap with a Chloraprep, 15 seconds on the threads of the cap, and 30 seconds of drying time.
I wish I had a man like Peter!! Your an Angel. Nary deserves you. God Bless Mary and Peter and your challenging path. My man doesn't come close to understanding chronic illness and the need for inspiration instead if the feeling of being a burden. My husband is no Preacher but He pretends like he's one. Oh well! xo
I admire how you two seem to find fun and humor even in bad circumstances. I have been living with chronic illness for over 9 years now. my husband works long demanding hours. we really struggle to communicate and find things we can both enjoy with my physical limitations. could you give any advice on how you keep your marriage strong and keep a positive attitude living with chronic illness
Sometimes it's the little miracles in life we need like accidentally buying muffin mix and having them be amazing
I wish I had Peter's speed in the kitchen! Dinner and dessert looked yummy!
Hi guys. Could you show a snippet of how Ollie does some of his service work like when he brings Mary her Meds. I did see him put his paw on Mary when her blood sugar was low which was amazing. 🐕🐕🐕
I love how humans throw our heads back when we laugh. 😂
este britt I never realize that. I wonder why we do that
Lee Sanchez nightcrew no clue really such an interesting idea probably to inhale more oxygen but ive no idea!
To take in more air
you both are an inspiration.
When I take Benadryl or Reglan I feel like crawling out of my skin. It's the most insane feeling ever!! And I sing your "life with a needle in your chest song" all the time since I have one in 24/7 for TPN. It's a catchy tune!
Im so sorry you are having a hard time with the IVIG's this time around :( I completely know what feeling like you want to crawl out of your skin from medication you unfortunately have to take, and its not fun :( Always keeping you guys in my prayers :) Thank you for being you!!!!
I subbed to your channel not too long ago.. a girl close to where I live named Libby recently passed away after her new lungs went into rejection.. I want to learn more about CF.. and bring more awareness! So excited to follow your story
awww,mary i hope you feel better..yeah,i understand wanting to crawl out of your skin i feel that suffering depression and PTSD..
I looked up your other video, Wishing I could crawl Out of My Skin, but I guess that time it was from something different. I'm sorry to hear that you feel like that again! Feel better!
I love singing along to the "good morning" song 😊
That onion cutting!! Haha I find it easier if you split the onion with the stem going in half so each half stays intact, then make slices not all the way to the stem one way, and then cut the other way. Perfect cubes!
I'm so glad that Mary has an appitite:) ps the tacos look really good!
Poor Bonsie can't hear the funny dialog when you wear headphones! LOL
Your music always makes me dance! Love it.
My first round of IVIG made me feel that way. I remember telling my doctor when he checked on me that my head was "buzzing" and I still had two hours left to go on the infusion. And of course the Benadryl adds another element of feeling weird. Hope you're not feeling it today!
My daughter is gluten free and learned to cook using King Arthur brand. It's hard to find really good gluten free carb mixes. This brand is exceptionally good!
Sometimes I have a reaction to Benadryl that makes my skin crawl. It's an unnerving/anxious feeling. Yummy muffins!
hang in there,Mary. you are such an inspiration to me x and I'm sure many others. always keep that pretty smile and positive attitude. much love to you and peter. oh I can't forget Ollie boy. ;))
Hope you are feeling better Mary!..Happy to see Ollie is feeling better :) ... I just found out my cat ive had 10 yrs has a tumor of the jaw bone :( there is nothing that can be done....I took her to another vet for a second opinion...but alas the same news :( ....now im craving muffins!..your vlogs always make me hungry! :)
Feel better Mary hugs and kisses 😍😍😍😍💕💕💕💕
Oh Mary! I have missed watching you 3! My phone was out of data earlier than usual (woops) so I've gotta get caught up! I hope Ollie is doing ok. ♡♡
I hope you are feeling much better after the IVIG infusion you did.
Now I'm craving pancakes for dinner. I need soft stuff until I have some dental work finished out. I have been struggling with various infections for months--now dental from secondary Sjogren's. In pain and exhausted and afraid.
Peter since you dont have much ounter space why dont you get one of those moveable islands to use in the middle of kitchen so you have more prep space
Peter, you are a great example of what a husband should be!!!!!!!!!!!!!!!!!!!!!!
I have a PICC line and i flush with a 3ml yellow heparin 2x a day. Its interesting that different doctors/nurses tell you to use different things!
The first homecare company I used had me do a yellow heparin after each infusion (3 days a week), my current homecare company out of my children's hospital has me do a blue after my infusions (which are now daily and before they were daily they had me flush with a blue if I was accessed but did not infuse that day) and I only use a yellow when deaccessing even if I get reaccessed a few hours later
"Sometimes you just wanna mix it up and end it in the bathroom" ROFL!
So good to see you both laugh.
I used to use the yellow heparin daily and was told blue was for kids and shorter lines. They wound up turning my blood to soup and my line clotted after a year and a half anyway. I couldn't draw back to take it out either. It's now listed as an allergy, and my new port is made from material that repels blood and tissue and has a Groshong type valve on it so I don't have to be accessed every day. When I had the old one after I was taken off heparin locks, I had to flush every 24 hrs with saline, but my new port doesn't allow blood to enter the line unless I draw back due to the valve. I actually get blood return now lol.
Oh hey you were watching Jim Gaffigan! He's from my neck of the woods. Chesterton Indiana!
I've felt that way before it's the worst hope you feel better soon
Does the infusion seem to help? Labs showing any improvement?
i just got out of the hospital for an outpatient upper endoscopy. They found nothing but I am chronically ill by vomiting. Here's hoping the biopsies give an answer or the doctor had another suggestion.
Ashlein Love good luck!
Kat thank you :)
Ashlein Love If you haven't already had one done, I would ask for a gastric emptying test. Sometimes vomiting can be caused by your stomach not emptying well enough. I hope they find the cause and you feel better soon!
kassandramarlene13 thank you and i think that is the next step once the biopsies return. He wants me to think it is just anxiety but he even admitted before he didn't think my stomach was emptying right.
I had no internet for two weeks I missed you so much!!
Best Jim Gaffigan: "What does it feel like to have all those kids? Well, pretend you are drowning.................and someone hands you a baby"!
you take such good care of Mary. I feel like she wouldnt be nearly as healthy if you werent such a good hubcap! God bless.
Judith Brummett gotta love auto correct! Peter is a good hubcap. Lol!
oopsie! it wasn't auto correct. I call mine "hubcap" instead of husband. lol.... He even answers to it after 30 years hahahaha I just didn't pay attention to it as I was typing.
im sick today and watching you laugh is making my day! love you guys :) i love that pancake mix I'm glad to hear that the muffins are good too !!!!!!! peater you out did your self mary is so lucky to have you!!! p.s you are getting stronger or more confident when you are doing yoga merry!!!! :)))
PETER!! My OCD!! The cupcake cases.. Really???!! Haha😂
If you ever wanna make quick pancakes, use 3 eggs, 2 mugs of milk/water/almond milk and 2 mugs of flour (use gluten free mix if you want, I do too =) ) plus a little sugar if you want to and mix it together and you've got pancakes like my grandma used to make them! =)
((I always use middle sized coffee mugs to make measuring easy, the size doesn't really matter it just depends on how much batter you wanna have, and liquid and flour have to be in equal proportions; or if you use big mugs just use more eggs so the colour looks kinda yellow like normal pancake batter, cause the eggs really create the pancake flavour.)) Lots of love from Germany :)
Pray feel better ms Mary and have a bless day Frey Life God bless
You can use the muffin mix as a pancake batter I have done it and it works.
Yeah I use a yellow heparin once a day in an unused lumen :) But most hospitals inpatient opt for a blue heparin every 6 or 8 hours instead. But the less times you access your line the better for infection control so hh does yellow for me
Brittney Davison i flush with blue daily after my iv hydration is done and only use yellow before deacessing once a week.
I use a yellow heparin after my ivig but I do not stay accessed. It lasts a month
With picc lines we don't use heparin anymore when flushing them
I use yellow heprin! Never used the blue outside of the hospital.
Mary, did you push the Benadryl via your port? I'm a nurse and Benadryl is one of many medications that can cause a "feeling like you need to crawl out of your skin" reaction if you push it too quickly. Patients often describe it in almost those exact terms. I find pushing it VERY slowly helps.
If it wasn't the Benadryl, perhaps the IVIG can cause a similar reaction.
Devin She uses the Benadryl to help the way the IVIG makes her feel.
Hi B Rie. I was referring to how she takes the Benadryl. I see that she takes it for the IVIG, but regardless of why a person is taking Benadryl, if you push it too quickly (i.e. deliver it via IV very rapidly), the Benadryl itself can cause the crawling out of your skin reaction. Hope this helps!
i flush with blue daily after my hydration is done not every 8 hours though. and use yellow before deacessing. interesting how others do it differently
Had that feeling once, so scary to me, went to the doctor the next day. Never happened again but I remember that feeling so well
I'm home sick today with bronchitis and watching this made me feel a little bit better
Those muffins look great, Peter!
Praying for you Mary
Hey guys, you may not see this. Im new to your page. I've been watching and trying to catch up. as someone who has a genetic condition herself, I just want to say how inspiring you are Mary. I really enjoy your vlogs. thank you guys for sharing with us! I had to comment on that's why I'm because I happen to be a pharmacy technician and I work for a home infusion pharmacy, IVIG is what I do. also and by the way thanks for mentioning about shopkick. I started using that app pretty cool and I'm having fun with it! Have a great day! :)