EMOTIONAL INTERVIEW | My Cystic Fibrosis Journey
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- Опубликовано: 29 сен 2024
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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.💕🌸
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’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.
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 u are such a precious woman...I am standing here crying with you...Thank you for sharing your journey ❤
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!
Powerful! Powerful testimony.
I adore you so much Mary! Thank you so much for always sharing your story and keeping us informed and teaching us.
I pray God continues to bless you and Peter and you did a phenomenal job telling your story ❤️ your faith is absolutely beautiful to see. Sending my love and prayers to you always 🙏💕
I am praying for you. Love you
I love you Mary,God Bless You
You are an inspiration to many❤️
Thank you so much for being so open with us and sharing this Mary, thank you for what you do
You are not a mistake!
God is too wise to be mistaken and too good be unkind.
I lost it when you said "my lung function increased by 19%." That's just unbelievable. What a true miracle.
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.
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.
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 :)
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. 😶🙏🏼💕
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?
MARY FREY , YOU ARE A WARRIOR! Be blessed precious lady. We love you
James 1:12 says “Blessed is the one who perseveres under trial...”. Keep going, Mary & Peter. Keep going.
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.
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💚🖤💚🖤
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
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!
"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.
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.
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
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.
Ugh I’m crying I’m so happy, relieved and proud of you sending so much love !!!!! ❤️❤️
You are truly amazing. You keep me going and loving every single moment of life.
Love y'all so so so so so much ❤️🇮🇪🇮🇪🇮🇪
The saddest part is that this medication unfortunately isn't available in many other countries yet.
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. 🙏🙏🙏♥️♥️♥️
Lord Mary, everytime you teared up, I did too. You are very blessed and you are not a mistake.
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
Mary this is amazing news! I’m sooo happy for you and Peter! ❤️
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. 🙏🏼💓
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.
I feel this what your talking about! I have Pulmonary Hypertension! I dont look sick! But my body is!
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.
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 ♥️
Your story was so important❤❤❤❤❤❤
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.
This was so touching Mary praise God the medicine is working for YouYou and Peter and Your animals are so special God Bless
And little did she know that 8 months later she would hold a baby in her arms
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!
Such a testimony! You are very brave in your transparency. And you are so encouraging.
Trikafta is a miracle drug. I remember you coughing and spitting up blood in your little cups, I felt so sorry for you, Mary, CF wouldn’t let you do much back then. I’m so happy you are feeling much better, thanks to your miracle drug...TRIKAFTA! 🥰🌺🌹♥️👍
You have taught me to enjoy things daily thank you!! And to not be so hard on myself on the hard days I have fibromyalgia ❤️
How can I not love God after watching this? Mary, I promised that I will come back to watch this video again and again when I lose my faith, when I feel down and depressed, when my body aches, when I lose all my energy and can only lie on bed, and when I complain to God :). You are a living miracle and a Saint God demonstrates . Thank you so much for everything.
You are such a beautiful soul 💜💜💜 you are a gift ,deffenatly not a mistake
Y’all are so amazing , tus made me cry so beautiful
Thank you Mary for reminding me to be grateful for every day I have on Earth...Be well pretty girl!
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!!
I too have a doctor telling me, "Help is coming soon." Problem is, I've had 9 brain surgeries in 12 years and my body can't get to that 10 year mark my neurosurgeon predicts at this pace. SO hard when you have an incurable disease and it's a race against the clock.
Praise Jesus for Trikafta.
I have 3 grandkids with cf and the oldest started his about the same time he has turned a 100% turn around . they have cut meds and took out feeding tube. That is awesome
That was beautiful, Mary. You are so courageous and awe inspiring.
Mary I am so very proud of you. And you did a great job.
God bless you, Mary! I’m sure messenger RNA will help all patients regardless of their mutations. I hope soon. 🙏🕯💛🌞🌻
How do I get to know if trikafta work for me I am 14 years old in India there are not much doctors.
If you have cystic fibrosis you may have to reach out to another country to help you with care
Hey Mary u made me cry with this beautiful interview I do not have a chronic illness but I do have cerebral palsy. ( love you take care u guys )
I have CP too (spastic diplegia) and Mary's optimism through such adversity really inspires me.
@@joysticktalent326 she inspires me too I literally cried two times. I never thought I would cry but seeing her cry made me cry
@Hannah Lapointe By the way I have spastic cerebral palsy but I don't know what specific type. Also thank you for responding to my comment.
This is amazing... crying a river right now
it's weird to see you talk for minutes without coughing to be honest but I'm glad it worked for you. I remember videos you were choking like every 2 minutes :(
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
Wow, Mary, I wish I could hug you!🤗🙏✝️
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
It happened Mary and Peter Frey!…!…!…!!!!!! God bless you….I know it’s just a mend and treatment but your appreciation is so beautiful 🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🤱🏼👨👨👧👨👨👦 What a joy God is GOOD always in Jesus name
this video brought me to tears.. i'm so happy for you guys!! sadly i am not able to take trikafta, hopefully some day there will be a cure!
Thank you Frey Life for posting your videos!!!! My son was diagnosed at two weeks with Cystic Fibrosis💝💝 I cant tell you how much your videos have helped. He’s my lil miracle and you help me understand what kind of road we may have to go through 💝💝
Powerful and heartfelt video. Thank you for sharing this story, Mary.
Hi again 💟💟💟
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.
Mary, words can not describe just how happy I am for you & your family ❤ 😊😀
You are so very awesome & have such a sweet, kind & caring nature.
Your going places girlfriend 😀😀😀👍
Been following your Journey for quite a few years now. You are both an incredible couple & your faith really shines through in everything you do ☺️😊
Blessings to you both 😊🕊
Sending gentle hugs & Aroha your way from New Zealand.
🤗🤗🤗 ❤❤❤
Take care, S 🌻🌻🌻
Ta
Dear Mary , it seems like 100yrs. ago when I first told you and Peter about my granddaughter (CF) I was so hoping you could get to try this .She had just been awarded the new experimental drug (no name) that cost 700K $ / yr. by the CF foundation here in TX. You said you probably couldn't have it "wrong mutation etc." I felt so bad it was like "Survivor's Guilt".Well , I told you about her graduating with 2 degrees math and physics but initially was in Biomedical Engineering and went a different path (not by much) . The drug that bought her a new life was...yes, Trikafta/Tricafta ?sp. ! She accepted a job in San Francisco (aerospace) as a project mgr. bidding on jet engines . We are all so happy for her (and Grammy still worries) but we know who is really in charge ,don't we ? Only sad part is her Daddy never got to see her leave TX in her Tesla with Lionel ,her doggie , a Chow-Chow that looks like a lion ! LOL He became ill and passed away 5/2/20 . Not Covid .He was our oldest son .and still waiting to have a great Mass / Memorial service so we didn't have restrictions .May will see that get done .He was a brilliant lawyer .He did lots for CF here . So sad . Just wanted to share how God's plan is so totally awesome . LYLMO XXXXOOOO Karen M. Plano, TX
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
Hi Mary, I don't have CF, but today it was announced our Australian government won't come to agreement with TRIKAFTA because it is too expensive. Patients here on concession cards pay $6.50 or max $40 if working. Greg Hunt our health minister says his hands are tied. The drug has been approved but VERTEX want more money. So in other words everyone with the two mutations strain of CF from 12 years is "recommended" TRIKAFTA but the company vertex won't negotiate with our govt to give it to people this blocks access. I find this greedy and disgusting in negotiations of patients lives some listed for transplant as teenagers. The youngest you can get listed here is about 11 or 12. I'm sending up prayers when I heard this news. And wonder if you can be am advocate for our country too ? It's so I fair people with CF didn't ask to be born this way now a greedy drug company won't try and be flexible. Makes me sick. Much love, Sonia, Sydney Australia
I remember your coughing when you would first wake up and throughout your days. I wasn’t sure how long we would have you but my gf and I prayed. Knowing God was taking care of you and hoping for a better treatment. We lost a friend to CF a few years back. She was in her late 60’s. I sure wish she would of had that treatment as she suffered most of her life. So grateful This medication was available to you. No guilt, it’s a gift from God. ♥️🙏🏻
Hey Frey family, congratulations on your beautiful baby. I’m 49 and on Trikafta again. Previously, I started and stopped twice because of adverse side effects and elevated liver enzymes. Then tried a third time but on half-dosing for 6 months. But also stopped taking my breathing treatments. No good - my numbers dropped big time. So I starting full dosing and taking my breathing treatments religiously. The half dosing did help transfer back to full dosing with lesser side effects but it seems less benefit. IDK…what does your team say about yo-yo dosing? Next month I go back to my team and see if my numbers went up. What’s your routine before you do your spertronomy test to max out your result?
I’ve gotten Covid twice, very hard with CF. The recover from this seems extended. You have any similar difficulties with Covid? How did you recover from it, and time to recover back to baseline?
Based on previous videos about hope, you feeling good about the next 10 years ? You sound and look great and happy with your wonderful and supportive family.
Lastly, you seems very connected to CF community. Any word on gene therapy solutions any time soon or when we can expect them?
Thanks.
( I preface this by saying I’m not a doctor or a scientist or a chemist ect) So this maybe my Not So Humble Opinion. Whoever you are if you’ve been born and if you’ve been born with a disability or illness, You yes You Are not a Mistake. Somehow Mother Nature needed You to be born. For whatever purpose You where needed and that You were needed to be born and to live ( in whatever way that is or looks like for You) .................... ( Sometimes when I’m hit that button to look at one of Your Frey Life Posts, I’m getting on with housework. And in this instance I’m grateful that I did for this post. Because if I’d sat down and watched it, undistracted by housework, I would’ve been blubbering my eyes out.......... And so I just wish to say -: Thank You Mary for sharing this with all of us who view/watch this channel......... ⚛️☮️ 🌵 🌏
Oh geez do I ever know having to save my energy for more important things. I have Fibromyalgia, Rheumatoid Arthritis and a horrible autoimmune disease that makes me feel like I have the flu aches every day of my life. The constant pain has made me suicidal. I even researched assisted suicide. My internal inflammation gets so high and painful. My temperature can get to 99-104 sometimes daily. They don’t have a cure for my condition. I’m so sensitive to medication that I cannot take morphine which is what’s prescribed from my pain mgmt doctor because I’m suffering severe pain. But I can’t take his prescription for morphine so he gives me Norco. That’s all I can take and it minimally helps a tiny bit. I know what it feels like to be so grateful for those moments I get a reprieve and my body isn’t attacking my internal organs. Those days are only a few days a year for me but when I have them I do all I can in that time to make up for the days I can’t. 🙏🏻🙏🏻
I would love to just talk to you even if on messenger or how ever!! YOU are so AMAZING!!!I am literally living a life similar to you were I feel like I know it’s not going to work but maybe someone else would benefit from me doing this..... (I have mast cell, Ehlers Danlos, unable to eat due to my mast cell...yes I know sounds crazy, my husband would tell u I am very much like you just living day to day and he worries every night that I’m not going to be with him any more when he gets home from work!!!! So I know ur super busy and I sound crazy but if u get a second maybe just say hi!!!! Good bless you and your family!!!!!
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.
Thank you, Mary & Peter, thank you so so much. What you are doing here is so important, not just on youtube, but with your whole lives, and your hearts, your words, your sacrifices, your pain, your joy, your laughter, your light, and your dreams. You don't just dream for yourselves, you dream for others with all the heart I think I've ever seen anyone dream for someone else. That's just beautiful. I lost the first comment I typed up months ago when I first watched this vlog. Rewatching it now, and your interview, Mary, yes, again, my heart is moved. Not just by your grief, but in the mirroring of my own, and what it means to press on with the joy and hope of the Lord. There is so much that you are doing and sharing that has encouraged me deeply in my own life, in so many ways. My chronic illness journey looks nothing like yours, and it doesn't have to. That's okay. We each walk, and that's the point. Jesus wants us to walk with Him, because He wants us to be with Him. He wants where He is to be where we get to be also. (John 14:6). I love that. And, I really love and appreciate you guys, a lot. I waited far far to long to start commenting on your vlogs, and I know you can't possibly read every single comment on your videos (certainly not reply to them all, even if you did read them all). That's okay too. Someone might read this, they might not, it's okay. I'm thankful I get to write this. Thank you. Thank you, and I thank the Lord for you. Keep looking to God and His Word. Remember God's love and truth every day.
You’re an amazing and strong person ❤️
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.
Best video ever. Im pretty sure we all cried with you Mary.
Mary, you are a blessing. :)
My hope was restored!! So powerful in them words.. I have a stomach disorder that is very rare.. not much research but when we came up with my med combo and it actually started working and I could live outside the hospital I finally seen HOPE.. praying for you! 🤍
Invisible illness/internal injury is so very difficult. Well meaning people say the DUMBEST things to you. The best is when you suddenly drop 15 lbs from not being able to eat due to GI damage and vomiting and people tell you how great you look when you are sickly thin.
Ive watched and worried about you for quite sonetime Mary. Ive been blessed day in and day out by your sweet spirit and your spirit. The joy and pure love between you and Peter just makes my heart happy. Keep being the fantastic person you are. Love from Texas.
Crying tears of joy, pain, sorrow, sadness, all of it...along with you. You're incredibly strong. Thank you so much for sharing
That was very powerful 💞
You are awesome and amazingly strong! I to can relate to “I hope you feel better soon” when Reality is not like that. I cried through your whole story. I happen to be born in 88 I was late diagnosed with atypical variant CF that is severely effecting my GI and now hitting my lungs. I love your blog and I plan on ordering some t-shirts from you. You are definitely a blessing you are helping me cope by watching your blogs. You are a blessing to everyone literally watching your blogs has helped me allot. Thank you
Mary you are such a gift you care for so many no matter what your going through. You and Peter share so much with others. You and Peter live the word of God every day you share your life. The way you talked in this video shows how much you care. Hi to Ollie, Harry enjoy your furry friends. 🐈🐾🐕
Thanks to the person that liked my comment
I understand the guilt. I feel it.
But we DO deserve this Med.
We deserve it.
That fact doesn’t take away from other people. We ALL deserve to feel better.
I think of it almost like survivors guilt. Why us? Why were we given the chance ?
We may never know. But we were.
Mary, You have inspired and continue inspire people all over the world every day You have a true purpose. I may not have CF, but I resonated with this video so much because I have many chronic health conditions and know that some days my plans my change in an instant. I have been through multiple ER visits more medications than I can imagine and when u mentioned the side effects, I literally said that's me. Every medication I take I pretty much have to endure bad side effects. I literally teared up watching this because in a way its been my journey too. Please know that u and Peter are both my heroes. I have spent most of my life trying to find the medication treatment that would work. Thank u for helping me to be a stronger person and to realize I am not broken. God has made me this way for a person. I too hope to advocate for others with chronic health conditions and mental health issues as well especially anxiety. Mary, I am so happy u finally found something that worked for you. Your progress is truly amazing and inspiring. Much love u Mary, Peter, Ollie, and Harry. I want send fan mail, but can't find the address.