EMOTIONAL INTERVIEW | My Cystic Fibrosis Journey
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- čas přidán 14. 04. 2021
- This interview was originally filmed for Emily's Entourage, learn more about them here: www.emilysentourage.org
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Welcome to The Frey Life daily vlogs! We are Peter & Mary, a married couple in our early 30's, showing the ups and downs of everyday life with #CysticFibrosis, a life-threatening lung disease that Mary was born with. We have an adorable standard poodle, Oliver, and a hairless sphynx cat, Harry. It's our hope that these videos can be an encouragement to to celebrate the little things in life and find joy amidst a world full of hard realities!
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We wanted to share this footage from a few months ago. If you are feeling unseen or alone, I hope this can help you feel less alone in the journey.
God is so good the timing ⏱ of this video renewed my hope & that I am not unseen from a fellow Multiple Sclerosis Warrior hugs & love God Bless you
You are so amazing Mary and inspiring. I will never stop watching your videos . You taught me to choose joy over negativity. Thank you for being you.
Much love
Megan Volz
I am so grateful needed to see this today Gods perfect timing ⏱ Thanks for renewing my hope as a fellow MS Warrior
My husband passed from IPF. I know it is different from CF but some of the struggles are the same. Breathing and coughing.
Keep fighting!!! Much Love!!!
Thank you for sharing your heart ❤️ You have voiced it so eloquently and your words mean so much to so many every single day. And to continue to fight the good fight for yourself and others is such a virtue. May God continue to bless you and your family. We love you Mary Frey.💕🌸
I lost it when you said "my lung function increased by 19%." That's just unbelievable. What a true miracle.
Oh God “I was not a mistake”. Girl you have no idea how many people that touched and how many people can relate. You r loved and you are not alone.
Mary, I remember before Trikafta I was so scared we were losing you. You were so severely sick never getting a break from this terrible disease. This medication has truly been a miracle. I can’t imagine what life was like for you. I am so grateful this worked for you. You and Peter are truly on a new journey filled with hope and happiness. May God Bless you now and always 🙏🏻💗
She felt better soon 😭💕
Nothing feels worse than being unable to breathe or get enough oxygen into the blood. I don't have CF but I do have COPD and emphysema and have been having a really difficult time with it lately as I've been hospitalized no fewer than four times so far since early November with respiratory problems related to it. The worst feeling is when your oxygen saturation levels drop so low that you begin to feel weak and shaky despite being able to breathe and having clear lung sounds and having to practically be tethered to the oxygen concentrator all the time.
I was just seven years old when I was in a Goodwill with my grandfather. I have always been an avid reader and for some reason, this book with a picture of a little girl on it caught my attention. It wasn't a kid's book, but Frank Deford's book about his daughter, Alex. I do not know why I had to have it at that age, but I did and I read it, then some years later saw the movie. Ever since then, and I'm just turned 40 now, I've always kept up with what new developments there were and donated to the CF Foundation whenever I could. How anyone could think that a child born with CF is a mistake, I'll never know. I'm so glad that Tricafta* came in time for you and so many others. You are quite literally the answered prayers of those who came before you and everyone who prayed and hoped for them. Try to remember that :)
For all chronic illnesses patients we hate to hear “feel better soon” or “You look good you must be getting better”. We know we will never be better yes we have better days but tomorrow I may be in bed not able to get up. Love and hugs to you
Yup...I have lupus
they say the same thing to me you look good but I'm in pain all the time my back pain never goes away I understand
Mary you have no idea how many people you have helped with hope and life to other CF patients..God is not done with you yet. Thru your vlogging, You will help so many more patients with your inspiration
I have several medical issues caused by what my team thinks is a genetic disorder called 22q. I have some good days and some bad days where I need to rest. Some days I miss my classes on Zoom with my day program for adults with Autism on Zoom. I am grateful for my support staff at my day program who understand that I have days where I need to take a day off and they understand. I try to just take every day how it comes. Me and my team take it day by day.
@@joycechivis6317 Not only today but for years to come through her videos.
This is making me cry! My disease is extremely rare, without an FDA approved treatment, and my non-profit is fighting for a new research trial that I’m in. As soon as it is fully funded, it starts we hope by January 2022, it will be ready! I’m waiting for my “Trikafta”. It will come in my lifetime!
Best of luck to you and I’ll be praying that your medication gets approved ASAP! Can you link your non profit or a way for me to donate to it?
James 1:12 says “Blessed is the one who perseveres under trial...”. Keep going, Mary & Peter. Keep going.
"Being made with CF was not a mistake. I am not a mistake." Wow, this is so powerful. I also have disabilities I was born with, and so often this is not the narrative we hear. I really appreciate you sharing your story, as always. 💙
Also, I am totally crying along with you. I've been following you for so long, and I am so happy that this medicine has helped you so much.
Oh, my sweet girl. You are not a mistake. God doesn’t make mistakes. My grandson also has CF. He wasn’t supposed to live past 12. He is now 22 and works everyday. When I look at him I see how awesome our God is. You are a blessing to so many. May God bless you always. PS my grandson was also in the clinical trials for this medication.
My neice's parents was told the same thing. She is now 28. We have no idea her time. But are blesses for eveyday.
My son is 8 months and I really hope he doesn’t grow up thinking he was a mistake, I’m proud of you for sharing your story/journey I think you’re amazing xxx
MARY FREY , YOU ARE A WARRIOR! Be blessed precious lady. We love you
I remember the days when in every vlog Mary would cough. Today the coughing is either carefully edited out or just fewer.
I am “speechlessly grateful” to have come across your channel today. You & Peter and your precious Elijah have, over the past few hours, become my family, too. I love your positivity, your Faith in God and your assurance in your love of and for each other that speaks to and from your hearts and feel blessed and grateful to have been led here to you today. I thank & appreciate you both for your openness and willingness to be vulnerable in front of the world. That you stand on and in that Faith and your two, tightly entwined Spirits shine with love & happiness. You are beautiful examples of people living their religion, not beating others over the head while declaring your righteousness and our damnation. I also believe in living my religion and sharing kindness, love & the uplifting of others. The “broken world” needs all the love it can possibly get - it needs millions of Marys and Peters. It needs more of all of us who struggle to live with grace and hope, with spreading kindness & inclusivity to all regardless of financial status, color, race, or religion. To help to heal some of the pain of brokenness with that Love. Can hardly wait to watch your journey from this point forward, in hope, joy, and Love. Blessings & Peace on you and those you love. 😶🙏🏼💕
I can relate my grandson was not a mistake his autism ADHD and epilepsy is who he is. He’s here for a reason so are you to touch the lives of people thank you for who you are and what your doing keep it up
THANK YOU MARY AND PETER! You help me feel more "normal" about finding joy in "the little things." I think sharing your journey in such detail is so courageous and helpful to so many! Mary, there is NOWAY you were "a mistake!" And I have NEVER considered you "average" in ANY sense of the word!
Lord Mary, everytime you teared up, I did too. You are very blessed and you are not a mistake.
Hearing you say that you were having trouble giving them a sample, your lung function improved by 19%, and hearing you talk about the playground brought tears to my eyes. So amazed to see how far you’ve come.
You were not a mistake and you should not feel bad getting the medication. You have taught us so much in letting us all get a glimpse of your life. We should thank you for your help and understanding. Your the best Mary! Much love and hugs.
Mary... I'm sobbing, typing by feel through tears. I used to follow you guys a couple years ago but stopped when my own illness took over. (Not just you, everyone.) Seeing the difference, it's left me speechless. And, not gonna lie, kinda jealous. What I would not give to live life. WHAT. I. WOULD. NOT. GIVE. Obviously I don't need to tell you to enjoy it because you know that this is a gift of unspeakable value. I don't dream of this anymore for myself and frankly sometimes I wish God would just call me Home because I feel like that's all that's left for me. That you have been given this chance... I'm so, so, SO happy for you. Truly.
Mary, you are a warrior! I'm on hospice/end of life care from multiple medical issues including Gastroparesis, POTS, SMA Syndrome, Lupus, Crohn's and several other conditions. I've been watching you and Peter for years now and I love you both! I hope that before I pass, we can hopefully talk and maybe meet one another, somehow because you have gotten me through some dark times honey and I love ya! Xoxo💚🖤💚🖤
Mary pointed out a good reminder, be kind others you don’t know what they may be going through. ........I’ve seen the remarkable change with your Coughing and hospital admissions have greatly reduced. 🙏🙏🙏♥️♥️♥️
You’re such a pure hearted daughter of God. Listening to how badly you want to share your blessing with other CF patients. I’m sure God has great plans with your life and you’re faith allows you to fulfill His purpose in you. I have no doubt your videos, testimony and interviews are helping so many, not just CF patients and their relatives.
Mary, I’m just sitting here,I just finished your video. Your strength is unwavering, your faith is holding you up each and everyday. I can not fathom what it is like to have CF, I would equate it to drowning. To face that every day, your strength is amazing. You don’t blame God you thank him for each day you have. You give your faith, strength away to everyone. You are a gift to this world, a kind sweet woman who’s attitude is an example of grace. There is a reason you were put on this trial, to help others. No one knew if if would work, you proved it does. May God Bless you and all that you do. Peter thank you for always being there for your wife. You stop what you are doing and help in any way you can, you cook, clean make sure she takes her meds and most of all love her. She has your strength to lean on and your love of our Lord keeps you going too. Thank you for sharing your video, it is a thing of beauty.
Ive been watching your videos for a couple years now. Always informative. And you and peter and the fur babies are just the sweetest.
Hey! Harry (Chicken) isn't a "fur" baby, lol. Sorry, couldn't help it. They are blessed in having Ollie who doesn't constantly shed hair and taking Harry into their family, considering Peter's allergic to normal cats. It's a blessing when ill, to have pets to share your life with. To miss out would be terrible. We love our fur baby so much, especially not having children like Mary and Peter.
Those are not tears of sorrow but of relief and joy and gratitude. We love you Mary
Watching this channel for so many years has been amazing. It’s so beautiful to see your condition improving. You’re so appreciative of your victories. I love your positivity.
This is amazing... crying a river right now
The bit about Christmas was such a great way to explain mindfulness, and being fully present. This was a really great interview, very profound. Mary has such a clear, heartfelt way of articulating things.
That was beautiful, Mary. You are so courageous and awe inspiring.
I got tears a couple times! I'm so glad I found you and that I have been watching you for a few years now. Before the combo, I found you. Thanks for
sharing!
Mary, you are an inspiration. You and Peter have been a huge light in my life for the past 3 years while I struggled with my health. Thank you for sharing your story. ❤❤❤
Powerful and heartfelt video. Thank you for sharing this story, Mary.
Mary, I am so moved by your ability to share your story and inform everyone about this life of CF and how vital it is for research of this disease. Thank you for sharing your life and your family with us. I have chronic lung disease of prematurity which has rendered me disabled. Your story gives me hope.
Your attitude is inspiring. I'm so happy you were blessed with Trikafta as a treatment, you deserve it!
Mary, what a touching interview. I've been watching since the basement days, and it's been amazing to see the improvement Trikafta has given you. You have always found the joy in every situation, but to see you be able to participate in so much more of life has been amazing! Praying that the medicine continues to benefit you!
I am so happy that the medication is working for you, you are amazing, it's been a long road for the cf community but I am so glad that there is light at the end of the tunnel for so many
Mary.. your journey, your perception of the world, the way you hold yourself, your thankfulness, your determination, you are one of the most incredible people I have ever experienced. I am not religious, sometimes I wish I was! Your faith brings you so much support but I have grown up in a very agnostic community and don’t think I could ever simply believe but you and Peter teach me those lessons, I have learnt how to trust my world and what is to come, to be grateful and choose joy and so I thank you for that. You and Peter and Ollie and Harry are a true gift ♥️
Been following you for about 3 years now! I’m so happy you are still here🙏💕
Mary, I watched this last night but wasn't able to leave a comment so I wanted to come back and make sure I did.
You blow me away honestly. You have such an incredible way with words. Being able to express and show what your day to day reality has looked like for you (and I'm sure many others) for 30 plus years in such a short video astounds me. Every time you teared up - so did I. Every time you felt gratitude - so did I. Every time you smiled and laughed through the tears - so did I. Every time I could feel the lump rise in your throat when you thought of others - my throat constricted too. You really can touch people's hearts by sharing your experiences.
I guess I just wanted to switch the lens for once and try to encourage YOU for a change, and let you know that although many of us who look forward to your vlogs pop up each night (or day depending where we are) might not have the same genetic disease (or any for that matter) all the same, we hear you, we support you and most of all we love you.
You, Peter, Ollie and Harry certainly brighten my day no matter what the topic, be it 'let's cook unconventionally with Mary!', Peter walking Ollie, you both going on a car date, switching the rooms up.... we all come back every day because you both provide such a solid, grounding way of life - that I for one certainly aspire to.
God Bless you both and let's all keep praying for a version of treatment that will benefit ALL CF patients.
Lin, UK x
I watched this before I went to work today. I was brought to tears every time you cried. I could feel every emotion you were having. I must say I do not know anyone personally who has gone through this. You go through life with so much grace and thankfulness. I hope some day I will have that as well. Thank you so much for continuing to share your story.
Such beautiful, heartfelt words. Every time you tear up - oh my heart! I remember one of your first videos I watched were your transplant evaluation vlogs, and seeing that journey (and having gone back and watch the previous years of vlogs) and how far you've come makes me so, so happy for you, even though I'm a complete stranger on the other side of the world. ❤
I know that feeling of guilt Mary! I have a lot of tummy issues and feel bad for those that are worse off than I am. I have not felt this good in a long time but have started to feel awful again recently. I wake up asking "Why me!?" thank you so much for sharing all of the stuff that you go through! I am not a CF patient but I am a patient who deals with my own medical issues! thank you
Ugh I’m crying I’m so happy, relieved and proud of you sending so much love !!!!! ❤️❤️
Very well said. The whole thing was just perfect. I'm crying. Very happy for your improvements.
Mary this is amazing news! I’m sooo happy for you and Peter! ❤️
WOW i followed your story 2 or so years ago having taken a long break from YT to find this update brings me great joy, to say the least. I'm so exciting to see pure happiness in your eyes
I have no words!! 💕🙏🏻💕🙏🏻💕 so glad that you had the opportunity to start with the medication.
Best video ever. Im pretty sure we all cried with you Mary.
Who can dislike this vlog? 🤦🏼♀️
😭 along with you Mary. 19% is a miracle. 🙏🏻
God Mary, look at you 💛 I remember finding your channel years ago and followed you ever since - seeing the improvements in your health and how well you’re doing now makes me tear up. I’m so happy for you and Peter, thank you for sharing your interview with us! 💛
What a moving video. Your story comes from your heart.
I am so overjoyed to see your health improvement in the last 15 years! I have been a fan for years and seeing you be like this is so awesome!
This is so touching. I understand feeling like you’re never going to find a treatment that will help. I’m so glad that your hope has been restored. 💜💜💜
Thank you for sharing your journey. You are such a strong woman. It sounds like you have all the most important parts figured out- Family, finding joy in the sorrows. You look so great
Hugs from NY. You absolutely inspire me every single day. My body has so many issues too and as I get older the signs of it are coming out so much more. But I started a new med 2 years ago and it has changed my life. I can stand and walk small distances now and I am not constantly sick and in pain. And when I am having a bad day I don't feel alone and for that I thank you. We can be warriors together. I pray for you and Peter and Ollie and Harry too ☺️😊
I’m so proud of you Mary for doing that interview, you tell your story so well and explain the need for more fundraising and research so well. It’s not easy sharing moments of vulnerability with people but I’m so glad you did because even though I don’t have cf, I know people that do and I know that if this medication came a year or two earlier they possibly wouldn’t have gotten a transplant for who knows how long. I want so badly for a medication that works for every cf patient, because like you said Mary, everyone deserves and needs a respite.
Oh Mary, we love you so much. ❤ You are such a ray of light. 🌞 A reminder everyday to appreciate everything. 🙏
Haven't finished the video yet, but already crying lol Love you Mary! I definitely needed to hear this today. Thank you for always sharing your life with us.
This was beautiful! Thank you for posting. 🌞
Dear Mary,
you‘re incredibly strong, smart and eloquent. Thank you for sharing your thoughts so honestly. I’m beyond grateful for your words. You‘re an inspiration for all beings - especially for those of us struggling with disease.
Love, Lilly
Mary, thank you so very much for sharing this video. What I am about to say may sound a little out there because you don't even know me, but while I was watching this video the mother inside of me wanted to give you a big hug and say "You are worth it and you deserve this treatment". I am so impressed with your continued strength, the "can do" attitude, your love for your fellow man and your faith. Keep up the great work. Peace and love to you and Peter.
Wow! Mary! Congratulations on your new journey! I cried the whole time! I don't have CF, I have a chronic auto immune disease, I get my inspiration to choose joy from you! Love you sweetie thank you
Oh my goodness! I watched you religiously 2-3 years ago, you fell under my radar and then someone I know has had a baby with CF and I decided to check in to see how things were going and I'm crying so many tears of happiness for you!!!!! 💕💕💕💕💕 the change is immense! My heart is so full! Xx
So Powerful! You are a Trooper and So Very Strong - I admire you so much Mary!
Mary, I was able to meet you in person one day at TJmaxx in MA. I found your channel in nursing school and have continued to watch your journey over the past 5 years. I am so happy for you and the blessings in your life. It is amazing to see how your quality of life has improved. Thank you for continue to post and spread awareness as well as the blessings of God. Praying for you, so happy to hear of all of the amazing changes!
Thank you for this video. It was sweet and encouraging. You and Peter are awesome!
I am so grateful that you have relief! I pray God will continue to bless you and others that are battling CF. ❤
Mary, thank you for sharing this. I know chronic illness. It’s a challenge. To see you living your life, is great. I wish I had your hospital decorating skills. I promise that you are helping people around the country if not the world. There are medical breakthroughs happening every day. To watch you improve on trikafta has brought me to happy tears some days. I can’t believe how much your lung function test has improved. Continued prayers for improvement.
Thank you so much for continuing to share your story, your testimony. Thank you for spreading so much truth and joy. I am amazed every single time I listen to your triple combo experience. Hallelujah!
I know this is an older video, but I want to add...MARY you are a glimmer of hope for everyone out here that will feel better once they hear your voice & your positive attitude comes rushing out!! ❤️❤️❤️
Literal fire in your eyes in the beginning. Passion. Hi! I’m new here. Happy to have found y’all. I’ve been lucky enough to have beautiful CF warriors in my life. Now I found another one. 🙏🏼💓
“Speachlessly grateful” so beautiful!! I’m blessed to have been able to see the transformation in your life Mary...it’s been truly special. Sending love & hugs, & prayers up for continued stability for you❤️🤗🙏
Darlin’, this is exactly why you are one who gets respite! You hun are the most unselfish human being I know! THE MOST unselfish! Don’t you ever feel guilty, just do what I know you do on the daily...you tell God how awesome he is, you thank him, and tell him how much you love him..HE IS PLEASED xo
Peace and love always ✌🏻
This.. made me cry. I have been watching you guys since you started, watched the years when you were slowly falling apart.. unfortunately wondering when we would get a video saying you passed. Then, trifekta came in, and the absolute CHANGE in your health, is PHENOMENAL from an outside point of view. It's absolutely amazing to see this MIRACLE. God bless you & Peter, your never ending faith in Him & everything He can do made this happen.
I have never cried so much from a CZcams video before. I am so happy for you, Mary. God is so good.
It has been ages since I’ve commented and kept up here, but I have been following your journey. Your progress is amazing and you look amazing
Sweet Mary, you are so uplifting even if you are doing poorly or feeling well. God bless you. Hi Peter!
Mary, I'm so glad to see your blogs again. You are so inspiring!
Mary, you’re such a great communicator. Your post is so inspirational. And you are very lucky you have great family support. I did not and do not have that. I was born with a debilitating muscle disease and my parents, well, to put it bluntly, were not nice or supportive. My father especially was very embarrassed of me. When I started high school, they even bought a house with stairs...and they didn’t even consider how in the heck am I supposed to get up and down to my bedroom. It was horrible. So many stories like that. And as someone who is about to turn 56, made for a very difficult life with basically no emotional support my entire life. So, for all of you parents out there that are supportive and love your kids no matter what, thank you and it makes a difference for someone facing lifelong pain and difficulty with a chronic illness. And to Mary and Peter, thank you for a place to go for inspiration!
I am at an awe about you Mary! It’s crazy watching the vlogs so worried about your decline and now you’re living life!
Thank you for sharing this. You just gave countless people struggling to live, and to love, abd to be heard a VOICE!!
Thank you for your transparency and being so open about your CF. God bless you and Peter.
I cannot thank you enough for this amazing video. I’m so sorry for some of the hard struggles you’ve been through, and I cannot tell you how much your channel has meant to me. The journey you guys took us on showed faith through the struggles and joy on the brighter days. Praying for y’all. God bless.
“I feel strong”. That’s because you are strong, sweetie. So incredibly strong and inspiring. Not to mention your adoring husband and the rest of the family. Listening to your miraculous and hope-filled testimony made me cheer louder than watching my Green Bay Packers score a touchdown. Much love to you and your family, honey. You got a lot of living to do. Don’t feel guilty. You’re a huge vessel in helping blaze the trail of treatment and cure for others as well. 💖🙏💖
Hi Mary, thanks for sharing so transparently. Such a tough disease. I have been delighted these 18 months to see your respite. Good timing too, since Ollie retired, that sweet, smart boy! Peter and you are valiant children of the Lord's. I pray for you two. ❤️ Margaret
I just love your perspective, yes I cried listening to your story. As a mother, God bless your mom! You go Mary!!
Thank you for sharing. I may not have CF bit I do have a chronic illness that is often invisible. Your vlogs are what sometimes help me through treatments and nebulizers. Thank you for always being so open and honest!
Hi Mary, You're a amazing, inspiration person!! I believe what I go through is nothing compared to what you're going through your whole life. And you have the most wonderful understanding hubby that's the core of your life. Your AweSome person you've come a long long way!! Thank you Mary!!🙂🙂🙂Keep going!!
Mary, I’ve been following you guys for a long time. I don’t typically comment, but I want you to know that this is one of my favorite videos you guys have ever made. You are such a good story teller. It’s so easy to listen to you. Your story and the way you and Peter respond to what comes your way is inspiring and brings such glory to God. I was in a pretty low place today when I watched this-and the Lord reminded me over and over that He is in control. What feels like too much and too hard, is never beyond His grasp. Thank you for sharing your story, and thank you for pointing me to Jesus today.
Crying tears of joy, pain, sorrow, sadness, all of it...along with you. You're incredibly strong. Thank you so much for sharing
God’s timing is amazing. Watching you in this moment say you were raised in a family where being born with CF was not a mistake; you were not a mistake. You’ve touched my heart tonight.
This made my heart feel whole. The happiness and excitement you shared when you start triketa is contagious. I also very much agree with your point about decorating your hospital room for Christmas. I work in a group home supporting seniors with intellectual disabilities. We are often in the hospital. I’ve always found it important to celebrate Christmas or birthday and make those days special, even if my resident has dementia. I threw a quarantine covid birthday party for a resident who got covid a few days before his birthday in November so while I was quarantining with him, we did his birthday up right, and ate cake often! I found so much motivation in this and I found your strength inspiring. You deserve it all. And I pray one day all CF patients can be on something that make their days easier!
This is my first time watching you in a few months and I have to say you sound soooo much better. I’m happy for you
Thank you for sharing this. It was so powerful.
Mary u are such a precious woman...I am standing here crying with you...Thank you for sharing your journey ❤
You're right you are not a mistake! You and Peter are a great example of Christians. I love you both.
Glad your medicine works so well for you. Praise God.
That was beautiful Mary. I have been with your channel for awhile now. I do remember all the hospital stays, the coughing, the IV meds, and I remember when you had to make the move to Durham. When I saw your new house I was thinking, what was Peter thinking? Three flights of stairs, laundry upstairs 😊. You were so joyful to see your new home and not one complaint about how many stairs there were to climb. I witnessed your transformation, your ability to do things you once could only dream of. I'm so happy for you and Peter that your life has become more "doable ". Thank God for the triple combo medication you are taking. Mary, you were not a mistake by any stretch of the imagination. I cried so much when you said that. God never makes mistakes. ❤ I will watch this video from time to time to remind myself how precious life is.
Praise God is all I can say!!! This is so awesome to hear Mary!! I am so extremely happy for you!!
Powerful! Powerful testimony.