CF BODIES ARE COMPLICATED! (3.15.16)
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- Опубліковано 4 жов 2024
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+thefreylife thank you so much for all of your positivity and fight. I'm in the hospital fighting sepsis and currently waiting to go into the OR to have my port removed and a central line placed. I was so nervous, but when watching your vlog, I was able to forget where I was and what was going on for those few minutes. Thank you Mary and Peter for all that you do for the chronic illness community. Love you! ♥️
Sorry your not feeling the best today Mary. Keeping you in my prayers! Me and my 6 month old daughter watch your blog everyday and love it. I appreciate you uploading even when you don't feel your best.
Thanks for the answer Mary you know what, I love when you and Peter both look at Ollie together, its like ...luv
Good for you Mary, for taking time to take care of yourself and realizing some days you can't do everything! And Peter you're such a kind soul, and you remind me of my boyfriend, who I'm so grateful to have. You two are a wonderful pair I enjoy watching your videos!
The fact that you guys watch Katie and Cullen... Omg. Just...
I love watching your videos, they make me so happy
Every video I watch when I hear "we're in the road" and don't forget to laugh every day" I light up. Mary, Peter if you reading this your story together is so inspiring and so amazing 💕💕 I watch your videos daily and even in my darkest places in the times I God graces me with you videos ❤️❤️ Thank you never stop making videos
I love how there's always something that you're thankful for mentioned in all of your vlog's. Even if it's something as simple as ibuprofen...reminds me to be thankful too.
Even when you have a bad day, you handle it with grace, and are an inspiration to me. How wonderful to know that eventually we will be given a wonderful glorified and perfect body, with no more pain. What a blessed hope! I pray that you feel better...God Bless you! You are loved!
Love Cullen & Katie!💜💜💜
You did the best you could some days are like that. Mary it is not a failure never. You inspire me each day both you, Peter and sweet Ollie. 😊👍👍👍😊. Some days just breathing is quite an accomplishment. Take care the both of you. I hope your headache gets better.
Thinking you you! ❤️
I hope you both feel better soon!!!!
I had one of those days today as well just could not finish pool therapy and sorta stayed in bed as well and that's ok we all have are good days and bad enjoy the good and deal with the bad tomorrow is a new day with a new beginnings hope tomorrow is better hugs
You are amazing and an inspiration to us all.
Hi guys..hope you feel better soon Mary. My giraffe print and decals came and I'm so happy!
My biggest inspiration right here ❤️
So the same ❤️💛💚💙💜
I understand so well when you were talking about how every day is different with how we feel. Some days you feel you can push past it and some days you just can't. Totally get it! I hope your headache gets better! God bless you!! You're never alone!🙏🏻❤️☺️
how do you stay so positive?!? I've been going through a lot. but you give me so much motivation!!
I was actually on the treadmill while watching this so thank you for the encouragement at the beginning of this video!! Hope you feel better today/tomorrow, Mary!!
I hope y'all feel better
I just came across your channel and I am so glad to have found you guys! Thank you for sharing your daily journey with us, it's really great to see what a CF day could look like as I am learning how to be a CF mom for my 4 month old son. You guys are amazing and thank you again!
I love watching your videos, I love watching the videos when you first started the vlog, it helps me try and get my mind off of things when I'm in the hospital because I have sever asthma! I love seeing ollie boy💜
Love Your vlogs Mary glad Your head feels better Ollie is so cute
I enjoy watching your videos I love how you're so positive all the time you look so happy even when you feel sick when you get headaches it's awesome that you just seem to ignore it all and act as if nothing was hurting! Thank you for your inspiration ❤️
Awesome job on keeping up your fitness, Mary! I also have a chronic illness, Ehlers-Danlos Syndrome, and it is also very important for me to stay fit so that my muscles can support my body since I have weak connective tissues. I have chronic pain every day but it is well managed right now with medications, daily exercise, and making sure I get enough sleep. I just got home from walking our dog with my 11 year old son. I can't wait to get my owl print. I'm going to frame it and put it my hallway. I'm a huge owl fanatic and I have many, many glass, ceramic and wooden owls.
Mary and Peter! I love your vlogs. Oh and much love for Oliver too.
Love MG too!! So happy that they are having a boy
Mary,
I am pretty new to your channel, but don't ever beat yourself up for needing to rest your body. You are fighting so many battles in your body. Best wishes to you both.
Thank you for the encouragement I am sitting here watching videos while pedaling on my exercise bike as I can't walk far .I find your videos very inspiring and love to watch god bless you Mary and Peter PS Ollie is so cute
You should sew or have someone else sew your blankets together and make a bigger throw size! I am in love with those as well and a friend of mine made me one. She took 8 of them and sewed them together and then sewers a thin sheet on the back and made like a quilt from them. The weight is about the same and it is sooooo awsum!
I love your videos Mary and Peter
Big hugs Mary! ❤️your cyster~Ashlynn
awww Ollie when you started coughing after the eliptical was out cold and sat up to look at you. so sweet.
Thanks for keeping me going today 💗
I've been binge watching your videos since accidentally stumbling over you in a dollar tree hack. I think it was meant to be. Your faith is so inspiring! I suffer from lupus and most people don't understand what it means when I say I'm having a "bad day". They don't understand how sometimes just grocery shopping can wear you out. Prayers to you and your family and thank you again for sharing your life with us. ❤️❤️
We ❤️ you guys no matter what u do xx
Awwwww!!! Ollie!!!! I wuv you!!!!
I am sorry you have been feeling crummy... I am still praying for more good days, than bad days for you! The little things in life are so important. Even though some days you can't make it to the things you wish you could, it's awesome you make the most of each day.
( 8 FUN ACTIVITIES FOR YOUR HOSPITAL ROOM!) I'm going to the HOSPITAL tomorrow for a biopsy because I have a liver transplant so I go to the HOSPITAL a lot so I'm go to do all 8 things. Think You Mary!!!!!!
you guys are great ! your positivity honestly inspires me
growing up my dad always had the Dutch coco cookies in our cupboards.....I've noticed they have gotten smaller then they used to be when I was a kid
Hi guys. Hope your head is feeling better Mary. You can apply a heat pack to your sinus area or if the pain is in the back of your head, apply heat to the back of your neck. It helps my headaches sometimes. :)
Headaches are the worst, happy yours was getting better. I hope you are headache free today or if you aren't that it isn't as bad. :)
Sometimes you need to just take a day to relax, recover, rejuvenate, whatever. I like watching your videos whatever you do (though I confess the grocery shopping, the trips to get fast food, the cooking videos, and the videos where you hang out or work with Ollie are my favorites). Can you tell I am a foodie? I am also wondering about Peter's cough and hoarseness of late. Here in Minnesota, the mold spores start entering the air when the snow melts and the grasses and trees start to wake up. This causes allergy problems for those who have mold or vegetation allergies. This usually lasts through April for me. Thanks as always for the videos. Hope the rest of your week is great.
Wish u could send to the uk and love u guys you make my day so happy even when things are. To good and I thanks you so much for that love Michaela x
I hope to you feel better. Have a great night!
I have ACNES and Gastroparesis, I'ts nothing compared to CF but I have so much appreciation for you guys!! I almost feel guilty that I had a sick day today..
Mary I hope you feel better soon, you are such a nice couple, and Oliver is super cute!
Greetings from the Netherlands!
(Lenthe Schutten)
I don't have CF but I do understand good days and bad days. I have CP, BP, chronic migraines, and panic disorder. Some days I feel good enough to conquer the day, and others it is a struggle to get out of bed. My husband tells me to do what I can, and that it is never a failed attempt.
Do you ever feel like on your good days you have to catch up? I do. Like I have to finish as much laundry, cook freezer meals, and run as many errands as possible in case tomorrow is a bad day. I know it is silly, and probably causes me to have a bad day when I push past my limits, but sometimes you just have to take the small victories. Blessings to you both.
Hi! I just discovered your channel and I just want to say I love your videos. They are so calming and positive. I hope you're feeling better. :)
I have Marfan's. We soldier on. Great job. With you.
I was watching so much fixer upper the other day, it was a marathon and I couldn't escape. HGTV is addictive!
I really understand about that each day is different. With my COPD some days I am more congested and short of breath and tired. I also have other issues that factor in. I have adrenal gland tumors, diabetic, intercostal neuralgia, diverticulitis, etc. Some times I can go do some shopping and other days I just can't.
as a sock horder and lover the socks were super cute. i can see why pater thought it was about the socks. 😛
You explained it perfect. It's the way I feel. I have multiple problems. When you have a good day you take it cause you don't know when the next one will come around.
Ollie is such a cute doggy!! I was wondering if you could show some of the things/tricks he does as your service dog. I know you've talked about what he does, but I'd love to see him in action!! And thank you for these wonderful, uplifting vlogs!!
+Jessica Rose We show some of his tasks in our Service dog Q and A video :)
you go girl
You guys are so positive even on bad days I love it. 💜
I tore my rotator cuff from repeated motion of the NuStep exercise machine at the Center, so only made it over twice last week. I plan on going more next week because I can, because you show me that I have the ability to keep trying to make myself stronger. I am always impressed with the amount of things you manage to get done even though you don't "feel good" all the time. Peter - have you tried warm Lemonade and salt gargling? Just an old time remedy for sore throat, hoarseness, irritated throat. Peace, Love and Light!
I totally understand that some days you are able to "push" yourself and some days you can't. I have lupus and totally understand. Some days I feel like I can fake it and some days I can't. Sometimes I feel like I am walking thru mud and everything is 10 times harder than other days. The days I hate are the in between days where I kind of feel sick but kind of don't. Those days take their toll on my emotions for some reason.
I agree, Peter needs to go to the Dr. Feel better soon guys.
Hi Mary well I don't have CF but I just wanna say how strong you are no matter what happens to you your always strong with CF and you inspire others with CF to be strong and don't give up so what ever happens never give up and stay strong
I hear ya on complicated! that is one thing other people without a rare disease tend to not understand...that's it's not a one issue and done. it is a lifelong managing situation.
Love you guys!!! Made "laugh every day" my bio on Instagram. You constant positivity is very uplifting
Mary & Peter, how do you stay so positive? Ive been through so much these last few months with my brother passing away, my grandma got cancer, I moved away from my family and live with different family know, and my bestfriends little sister has major seizures and has Autism....I think you get it....Its so hard for me to stay positive all the time. Most days I'm just super sad and have no energy...How do you guys do it?
It's okay to have a bad day Mary! We are so proud of you no matter what!
I am glad you doing this makes you smile and be strong I truly do, I just hope you don't forget to give as at the same time and it works just as good, all the best
Mary - you're seriously inspiring! My husband was trying to talk to me into going out for a bike ride but I was hungry and cranky and it is kinda cold out... And honestly, I thought about you with your CF, pushing through those elliptical workouts, and I felt like I had no excuse! I put on my big girl (bike) pants, ate a protein bar, and biked 6 miles! I just thought you might like to hear that I used you as my inspiration today! :-)
+shortysax That's awesome! and such an honor to be thought of as your inspiration .Thanks for sharing that!
Such a inspiration, my friend struggles with cf everyday watching your videos always makes us laugh:)
I'm sending you hugs xx
I don't get how you could dislike such an awesome video! :)
I wanna snuggle with Ollie boy so bad... He is so cute!! He's a bigger version of my Molly (Cock-a-Poo). I think a full size Poodle is our next dog after we get a house with a big back yard.
I am 71 years old dealing with bronchiectasis for the past year. I have a niece with cf who is 30, married a neat Christian guy, and is receiving gene therapy. She is doing very well so we feel blessed. I have been enjoying the glimpse you allow us to have into your journey, since I was diagnosed. The inhalers and the vest are a part of my life too. My question is this--do you feel the need to apologize when you are in a public setting for the coughing fits that come your way? I feel the need to reassure people that "Not to worry, it is nothing contagious". Do you tend to do that, or figure it is none of their business? Keep up the good fight, and the videos!
+Sebastián Phillips Bechelani A little bit of both- mostly I just keep on going, occasionally I tell people I have CF and it's not contagious :)
I TOTALLY understand what you mean about how you could make yourself get up and go even though you don't feel well. With my lupus/fibromyalgia I have the same thing. I am extremely sensitive to the sun and fluorescent lights. I get a rash, hot, inflamed and feel like I have the flu after long exposures. I could totally go do something but then the next day or that night I feel really bad. Or, if my lupus is flaring up I feel horrible to do anything other than lay around.I have gotten to the point of 'why make myself feel that way'? So, I don't do much anymore. I live alone with my two mini doxies so it's all okay. Hey you didn't do your lung pic give away. God Bless you guys!
My friend has cf also and I showed her a video of yours. You are so supported to her
Gilmore Girls, humus, and cucumbers!!!
When I was healthier and still working I taught fifth grade. Once we went on a field trip on a whale watching boat. It was so cool! We were out on the water for two or three hours and saw several whales. 'Twas a great day.
Yesterday, you mentioned you don't like the word hash. I remember once my brother show me this clip from Muppet Babies ('90's television, anyone?) Baby Gonzo was leading an Iditord team. Usually, they say "Mush, mush," to urge them to go faster. But Gonzo said, "Oatmeal, oatmeal!" It is silly, I know, but it really cracked me up and has stuck with me all these years. So, you could say oatmealtag or mushtag. Mush sounds better but I don't know if you dislike the word mush too because of the sh sound. Anyway, random silly side.
hey guys! I really love watching these videos and I have been praying for Mary ever since I found this channel. I would like to ask what church Peter preaches at l. I would really love to visit! Thank you for serving gods kingdom. God has really worked with you for his honor Peter!
Your smiles at the end of your videos radiate the essence of who you both are in Christ :) God bless you both. I'm almost at that point when I feel like I know you hehe :) I must be part of 'the family' :D hehe
+ElloetteLightbringer You are indeed part of our family!
Yay!! :D Kate Gregory-Frey :D It's got quite a ring to it :D xxx
I love watching the Vlogs after infusion especially after you said "If you did a therapy or whatever today to help your body, good!" Thanks Mary! I always think about the fact that my infusion is my "lazy day" but it is helping me!
Also hope you feel better tomorrow or should I say today lol I love your videos
Nothing wrong with lazy days I love lazy days lol feel better soon I have to say you seem like such a sweet person and Peter also and Ollie is just too cute and did i miss the vlog of announcing the #purplelungs drawing I was looking I'm from Oklahoma so our time zone are totally different God Bless Frey Family
Have they suggested that you move to a warmer climate ? My Mom has asthma and in the 90s she moved from Wisconsin To Arizona.
I think the weather also plays a part with lung problems. Like when you walk outside and there's moisture in the air therefore you'll probably cough more.
Cool new exercise you made up & how funny that peter thought you wanted to show us your socks. ..which were cute btw. Hope your days are better than this one lately
I love your videos❤.
I really need to find a way to make one of those blankets you have out of the baby receiving blankets. :D Anywho...Hoping that you are feeling bit better today.
The Batman voice is technically called "vocal fry". Hey Mary, are your stomach muscles super toned from the coughing? When I had bronchitis the doctor said I cracked a rib coughing. I don't know how you manage the muscle pain but you seem to do it with flying colors. It is inspiring to see someone else with a chronic illness live their life.
you guys are so cute❤️
My mom has fibromyalgia and her days are like yours. She can be fairly active one day with errands and everything and then the next day or two she's completely wiped out and sleeps a lot. I'm not diagnosed with fibro, but I have a lot of the symptoms and the same thing happens to me too. I have a doctor's appointment tomorrow and I'm already not looking forward to how much pain it's going to put me in.
I'm having one of those days today. Bed to couch to bed. BLAH
Have you thought about making mugs to sell on your store that maybe say The Frey Life on one side and Laugh Every Day on the other side? Or just one or the other.
You guys are awsome together!! Your love shines through!
Mary I just wanted to give you a heads up regarding Ibprophen! !I have kidney disease I was diagnosed with glurionephritas!! I had underlying kidney disease for years and went undiagnosed.
As I have studied my disease I have tried to find out what set it off. What happened to me is I was on a cruise and went to gift shop to get Tylenol or aspirin for a migraine I get 2 or 3 times a year. They didn't have any headache medicine so I went to infirmary and the doctor gave me Ibprophen. The next morning when I woke up my clothes wouldn't fit and I had gained 10 pounds of water over night. Went to the infirmary seen the doctor and he told me to fly home immediately and see my doctor.Thank God we were going home next day. When I got home the doctor told me my Kidneys were shutting down and my journey began.
Ibprophen has gotten a bad rap and they have changed there marketing and rebranded under Advil. Most people that don't know they have a kidney use of any kind Ibprophen can set it off. I would recommend Tylenol or Aspirin anything but Ibprophen . I just thought I would warn you. I know you have enough health issues to worry about.
Take Care
I know what you mean by not being able to do things that you ordinarily do. I had one of those days today. Because of the chronic back problems I have to space out the chores that I used to do in one day over several days. I make a list at he beginning of the week and try to do several things each day. Today I had planned to dust and vacuum but my arthritic hips decided that they wanted to rest today, so, that's about all I could do. I did manage to get cleaned up and dressed, make up my bed, clean the toilet and wash the dishes. The rest of the day was spent trying to find a comfortable position for sitting and staying off my feet. Since I had to stop working in 1997, I have learned to accept the fact that my body is no longer dependable. That has been harder to accept than the fact that I have a chronic pain condition. But, I have learned that tomorrow is a new day and even though it may not go the way I planned it will be different and hold new things to discover. I hope that you both will have a more comfortable day and feel better.. Maybe Peter is allergic to the time change? lol
+Debbie Lee I know how you feel - about not being able to get as much done as you used to - I am in the same boat. I do what I can and don't really worry about what doesn't get done. It's always there when I go back to it. But when I am 'sitting' I have my knitting and crocheting projects to work on. I always have 'projects' in the works, right now I have 3 in various stages and a couple to be mailed. If you don't know how to knit/crochet you can learn real easy on UA-cam. There are tons of 'helper' films there. I also keep Crossword puzzle books at different points in the house and in the car. Helps to build your word power. Sorry that I have intruded into your time, but - - - -. Take life easy, treat yourself and others well and keep moving and learning. Prayers always - Nc
N Cook I have crossword puzzle books too. I also watch a lot of old TV shows from the 60's and 70's, listen to music and write short stories for the X-Files fandom. I used to do latch hook but anything involving extensive use of my hands is out because of arthritis. I also read a lot and research topics of interest on the computer. Right now I'm learning about the Big Foot phenomena. It's quite interesting..
When will you announce the giveaway winners? It's giving me anxiety having to wait to know who won! Love you guys(including Ollie:))
With your bacteria never going away, are you basically living every day with walking pneumonia? Because of my asthma I've had pneumonia five times in my life so far and I can't imagine pneumonia being a lifestyle. Preventing pneumonia is my lifestyle, taking my corticosteroids, etc. I can't imagine just living with pneumonia that does not go away but also does not kill me. I can't wrap my mind around what that would be like.
my sister died of cf about 14 years ago... I can't believe it's been so long it seams like yesterday almost... I miss her so much... I now work in a specialty pharmacy that ships meds to cf patients as well as cancer and transplant patients. it gets hard when I talk to some cf patients it reminds me of her. I am a carrier and I worry that my bf is a carrier and then if he gets tested and is a carrier I have to think if I want to have a child or not. but I promises my sister I would name my daughter after her. at least she got to get married and live the married life for 6 months. I can't believe how far health care and the life span for cf patients has gotten much longer since she was around. most pts didn't last till they were 18, now they make it to their 30's.
Peter, a thought about your voice. Do you still have your tonsils? I was thinks no swelling could cause your issues. Prior to needing mine out I lost my voice /. Had a sore throat a lot and then they became so inflamed I choked on a soft baked not fried French fry which was, unpleasant. Going to the doctor just to make sure never hurts.
I can relate with having a disease and it just not effects where it's original located. I have Crohns Disease, my immune system attacks my digestive system. My joints hurt,I get headaches alot, My liver isn't happy it's levels are always off, I have had eye irradiated from dryness side effect of Crohns. When I was a teen in children's hospital I met 2 CF patient's one was younger like 8 yrs old use to do crafts all week while stuck in the hospital together, one day heard her mom on the radio talking about her make a wish came true how happy she was but weeks after the trip little girl passed away shocked me. Then met a girl who reminds me alot of you. she was 15 with CF, she would explain her CF treatments to me like it was just normal, I remember her PT and vest and the nurses trying to get her to eat small snacks all the time, together in the hospital we could comfort each other and make the time fly. Now I'm 28 , and pray she is doing well she should be like 26. we was sometimes mean,kid had broken jaw from a fight he was a foster kid, we would eat in front of him while he had his jaw wired. he would just chuckle a bit.
The good times(bad situations, but made the best of it),That's what I try to remember in my childhood of chronic illness, Do you have any hospital stays will good memories like favorite nurse, another patient?( Weird flash back for me is I made a poster of what to bring to the hospital as a kid when I was 16, when I was 23 had my son in NICU walked same halls in peds floor to NICU, my poster was still up brought so many emotions to me already in a emotional state that day.)
dehumidifier for peter but i don know if it would make mary feeling harder to breath