When we moved as boat owners, we couldn't trailer the boat. It had to be sailed. So for a year, prepping to take leave from new job and sailing the boat which was moored, fee free, we were approached to sell it. We were lucky in as much as it sold for what we paid for it. We'd had about three wonderful years sailing open water in our area which was magical and we will never forget our experiences. It was sad but it was a choice that had to be made. It is probable that you may not have much of a chance for boating, if Mary's health is deteriorating. You are young and you will have other experiences and one day you may become boat owners again. Take Ollie's boarding steps with, don't leave that with the boat. If you can find a safe, affordable storage area for your boat, would it really be worth the expense when you may not be able to be able to go boating with Mary. Any of Mary's family have space to stire the boat until you can sort things out. Not forgetting, it is easier to sell a boat in a boating area than if the area isn't into boating. Mary's health is the priority until she recovers from the transplant, right?
@@laurencliver6452 sometimes they do. Mary's team will know what to do, it happens with alot of medication to alot of people. Sometimes after the body gets use to the medication, it goes back to normal. This isn't a rare.
Wow that's awesome that you'd even offer that, that's awesome to know the the Grey family is real out there and just good people... Why does this make me emotional? If it were me I'd feel so blessed to have touched so many lives
Courtney Cox how lovely of you to offer Courtney, that’s so nice of you. That fills my heart with joy. I’m in the UK with a big empty garage but don’t think that going to help them! 😂🤣👍👏🏻🤗
You two are such a sweet couple! I began watching your journey about a year ago, and I just love your positivity. Congrats on your new home, and I am praying that the new medication works for you, Mary!
I'm not on the triple combo medication but I have been on Orkambi and Symdeko which uses some of the drugs used in the triple combo medication. I had cf related diabetes since I was 16 and used a very small amount of insulin once a day. Once I started Orkambi and switched and continued with Symdeko, I have no longer needed to do the insulin and my sugars continue to remain normal. One very great benefit of these new drugs! I will say at the start the sugars were rocky but after a few months everything stabilized! The docs were shocked as they were not aware of this during the trials.
you are among some of the first to have this? Not the first, but this is still a new medication! So thank you, also I know you NEED this but your taking this and also keeping note of side effects... will help others. Also I was telling my friend about CF, one I had not spoken to for years. and she was "How do you know so much?" and I was "Well my friend Mary has CF!" Then I showed her the youtube. But, you ARE a friend to all of us, and Peter and Ollie also! I taught her that a transplant is NOT a cure, but to remember, most of our life is about managing what we have to handle. Be it our health, our family, our loved ones and friends our job our pets... we manage life and help each other also!
Chaos is a butterfly... beautiful, colorful, flapping wings, flitting from one flower to the next for a meal. So too is life.. until we sit down and breathe to watch those beautiful colors as they float by, landing ever so softly on the flowers we so lovingly planted. 💜🦋🌻
I could see an artist's easel in that beautiful pew room with sunlight pouring through the windows and Mary happily drawing and painting. So much to look forward to. Give the meds time, the benefits could be life-changing.
I admire how you two think through decisions and how you balance each other through the parts of that process that you share with us. With all of the experience you two have managing multiple complex projects, I think that either of you have enough experience now to be hired as Senior Project Managers in most any industry!! ;) Living in the present too here in PA. Take care. Prayers daily!
I am a lot older than you two - it makes me smile and makes me happy that you are so wise about adapting to places and finding unexpected things to love about them! While at first I thought you really have everything coming at you at once, this video made me think maybe it's not so bad. - The move will manage to take away some focus on the Vertex combo. - The move will also show improvement better: new climate, renovated house, new fibres, new germs, additional stress and physical exhaustion. Not a bad testing ground for a new medication ... - Last but not least: possible improvement will come very handy during moving ... Thank you very much for answering questions that I posted, too! Thank you so very much for sharing! Kind regards from Susanne 🤗!
So happy for you to be finally taking this new medicine. Your new house is perfect and like you said you will adapt as needed. We bought our house from my dad and we started to care for him, we were one bedroom short because we have two kids and us. So for us to adapt we built in the formal living room which in reality was unused space. My dad had since passed and that “new room” has been one of our most used rooms over the years whereas before it wasn’t used at all. You figure it out like you always do.
It might have something to do with the fact that you have to take it with a fatty meal. Fat takes longer to metabolize. Maybe you could try adding a simple sugar with the fatty food, like juice or candy. 🤷🏻♀️
You picked the PERFECT house...location to hospital was the right priority....anything else of course you can make it work. Lots going on but you only have to do it one day at a time. Love from Scotland.
Love you all so much! It is so refreshing to find a couple that has an outlook on life that is so positive. I thank you for sharing your journey and allowing us to be apart of your family. Watching your videos help me so much, as a wife of a CF husband. For people who don’t live the reality of CF on a daily basis, it can be difficult to understand, but you both share the journey beautifully! Again, thank you! Hugs, Love & Prayers being sent your way!
I just love love love the way both you and Peter make the best out of everything. You both turn what others would see as a negative into a positive!! Possibly not being able to take the boat .. love the way you said it Mary.. maybe the boat was meant for that season of life. Your attitudes are amazing!!! Sending you, Peter and Ollie lots of Love ❤️
I am a pastors wife, too. 😊 Praying for you, Mary. Holding up Peter and Ollie, as well. God bless you both as you walk your cystic fibrosis journey with Jesus in the lead. Always trusting, ever hoping. 😁💕🙏
I have health issues time to time, the worst luck, very hard and dark times..watching what you guys go through and how positive you are through this journey, I love you all so much ! 🖤
I had wondered about the low blood sugars, good to have that explanation. I am watching this months later, hundreds of low blood sugars, a move, and a vastly improved Mary! What a joy! The way you two treat each other is am example that even someone who has been married a long time can learn from. 8 )
@@meganlovesdisneyandcrafts4780 yes but were talking about those times when she can hardly function. And just might need to get upstairs or down. Not all the time.
We literally moved to a one story house after investing in a stairlift that just never really worked that great... That was the #1 reason, stairs are not my friend
You might consider a Murphy Bed in a wooden closet.... maybe to match the pew? We moved so many times across long and short distances before my husband settled into his Ministry. He’s semi-retired now, but still supervises student pastors out on the northwest coast of Canada... it’s only a 6+ hour drive depending on the weather, road conditions, mud/rockslides. Life is most definitely an adventure!
I love how you can always put things into perspective......you are happy to be alive and have each other...the house met all the priorities...close to hosp and a safe place for Ollie to run around and the rest you can make work and learn to love! We can all learn a lot from you both!
I just got out of the hospital after having surgery on an abscess I had. I thought about you guys an watched a vlog to help me get though. I'm at home recovering now and doing much better. Hospitals are no fun but my nurse was awesome!
Low blood sugar is scary. Thankful for technology and Ollie and Peter to be there for you. I see so many potential ways to arrange your NC home and that’s exciting! I will pray about the boat situation as I continue to pray for the health improvements and all the other things happening right now. As always, love from Alabama ❣️💕💕
Mary and Peter you are absolute gems. Thankyou for opening your life on such an intimate level. I always find something inspiring to take with me watching your videos as I navigate my own chronic illness. And also for showing us what real love and commitment looks like. Greetings, love and blessings to you both from Melbourne Australia 😊💜💋
I think the exciting part will be the renovation projects you guys will take on over the months and years to adapt to your life style as you guys grow together. Calling a new and hopefully permanent place your home is exciting and I know I can’t wait to see the fence for Ollie since I am a dog/animal lover and I will be so happy for that renovation project!
I say make the pew room your bedroom when you get the whim! Who needs to make it formal with heavy doors and walls. Sunshine and windows and a comfy mattress is all you need. And I LOVE the attic...or 3rd floor!!
You answered the very questions I've been wondering about the most. The way you approach life shows that you two are wise beyond your years. Faith in God does that I believe. Love you . ❤
I hear you Peter. I’m in a hard in between currently. I’m really trying to be present in the moment, but I am struggling. I admire how you and Mary support each other.
I’m right there with you three on this journey and I’m so excited for all the good things and good times to come. :-) and yes, I like what you said Peter, “learn to love “ what you have, so very true sometimes, sending my love and hugs to the three of you, see you tomorrow!
I needed this message today of living in the in between. Moving across country in two weeks and I’m wrapping up work while looking forward to the next adventure along with being nervous about the move. Trying to be fully present!
You both are rockstars in so may ways. Staying present, seeing the positive which doesn’t mean you don’t live in the real world and bringing hope to so many. You choose joy ❤️❤️❤️
I’m happy to hear that there’s not crazy Side effects and like Peter said hopefully your body is just adjusting to the new drugs, I’m really rooting for you and that with the new home and the new drug it’s a sign of really good things to come 🤞🤞😊
Ok maybe we all should vote about the boat 😉 I vote you definitely keep it...also as another comment said Mary you didn't cough once in the video congratulations 👏👏👏... could this be an improvement in one day on your new med ??? Praying it is
Congratulations again to you both on the new house and the medication trial. You two are wise beyond your years in your approach and view of life. You are such role models for other young couples and I hope many take notice. You are a wonderful example of grace and gratitude to all of us, young and old. Best wishes always.🥰
Wow you guys!! I was totally not expecting your house to be so big and amazing! Having only seen the garage and the kitchen and those rooms down there and just your bedroom upstairs in the videos when you first got there I was under the impression that that was all of it besides maybe a second bedroom and basement. So when you turned and walked down the upstairs hall to three more bedrooms and another bathroom and all those closets I was shocked by how big and awesome it is! Then suddenly the hidden staircase to the amazing loft with that unbelievable Hollywood style closet with it's own island and that freaking shower up there holy cow!!!! I am so so so happy for you guys. Peter you did SUCH a great job finding that gem. It's perfect for you two for having family stay if and when Mary has the transplant. Speaking of....I am SO excited to see how Mary does on the new modulator drug! My friends (brother and sister with CF who are now 38 and 40) have been on it for the trial and they are doing amazing!! I knew they were doing a lot better because of a new med but I didn't know they were doing a drug triel so I am assuming it was this drug that they have been on. I'll have to ask them. Watching you guys helps me learn what they are dealing with without prying and asking them a bunch of questions. They deal with it more privately and don't talk mucb about so I love how much I'm learning from you. I saw a picture of CF lungs after transplant (the ones they took out) and it was crazy. Now every time Mary has a coughing fit I picture her lungs struggling like they are little characters with eyes a nose and mouth and they look like the lungs I saw. That's probably really weird but you guys always talk about her body as if it's a whole separate being that needs things like a sick pet. So the little spotted lungs characters that cough right along with her makes me feel extra sorry because now I'm concerned for Mary and Mary's lung creatures. Uh.. yeah. Anyway i really hope this drug helps you in such a huge way that your transplant is put off indefinitely. And to see you feel better would be absolutely amazing!!! You're on my mind a lot right now and I just hope it all goes your way. You deserve a break from it all.
Mary you look great! Praying this new medicine isn’t the cause of your blood sugar issues. You and Peter have so much going on so remember to give yourself some grace. You’re doing an amazing job! In your vlog of the new house you were wondering how cold it gets in Durham, it’ll be cold enough for a coat and to run the fire place. You’ll get snow a few times a year and you will have more ice than snow.
If you love the time you spend on the boat, make it work! Perhaps you can find somewhere to store it, maybe you can rent a space. Maybe you can find friends or family that have space for you to store it. Maybe friends or family would appreciate the boat and let you use it when you're up for it! You guys can always find a way to make it work!
I bet you can find a place to store the boat cheap, like they have boat yards in Juneau ak where I am from, or just a storage lot where people park cars trailers boats etc. Also a good possibility is to find a person with room like on Craigslist or by putting a request up on your new churches bulletin board to see if anyone has a pasture/driveway/space where you can park it for cheap.
I really hope you can sort the boat situation out and can keep it, Mary you totally light up whenever you go out on the boat and look so care free, please try and keep that little thing for you guys, you deserve to enjoy Every bit of happiness that comes your way ❤️
I just had hand surgery and my recovery includes watching your videos. Lots of prayers for the new medication. Hopefully the blood sugar sorts out for you. No spaced out Marys are allowed!!!
I hope the new medication continues to go well. You are right you learn from each living situation. There is always some type of comprise with home buying, and as you said you try to get your must haves for a home. I am excited for you all to have a new house to love and make home!
Been praying and thinking of you all day. Wearing my “Do What You Think You Can’t Do” Frey Life T-Shirt. Tackling boxes and settling in a new city while loosing one’s peripheral vision is a challenge. Lol. Just moved into my new ADA SEC 202 apartment in Denver to be near Colorado University Hospital for advance care. Maybe getting a shunt (surgery #17) later this year to save my eye sight. Have suspected IIH that is like having a large brain tumor. Too much cerebral fluid in my right side of my brain. Crohn’s, EPI, Asthma, Celiac, and others are semi stable. Migraines and symptoms from IIH are through the roof. UGH. Jesus is in control. So working on getting stronger and settling up my apartment for the future encase my eye sight gets worse. Also in process of transferring all my care and services from one state to another. Nightmarishly craziness. Definitely a new season in life.
You can always put in a stair lift for the stairs. My sister in law has a seat that she sits in that takes her upstairs. You can also move it out of the way if you want to walk up or down the stairs.
I love the attitude you guys have on your new home. you will make it work. I had just made an offer on my first home and it was accepted. I to had the attitude of I will make it work no matter what.
Love the positive thoughts on the boat! I have to tell you Mary, I know it has only been a couple days but as an “outsider” you do not sound as congested already on the vlog 💕💕 and you hardly coughed at all! hope the blood sugar gets under control too 💜💜
Beta cell function is linked to CFTR function. This is super common with the triple combo because elexa helps with CFTR function. You likely go low prior to elexa because you’re going high 30-60 minutes after you eat - you’re likely well over 200 and those with CF have a lack of first phase insulin response which is why everyone’s body over corrects. Ironically the solution is insulin so you don’t go high 30-60 minutes after eating and therefore you don’t get a large 2nd phase insulin response
You guys have to watch the kids baking championship, because there is a little girl on there named Tori, who has CF. and she seems so sweet and positive!!! reminded me so much of Mary!!
So sorry for the problems with your new meds! I'm hoping you're body needs to adjust to them ! Pretty soon you will be in your new home and you will adjust and adapt to a new environment it's quite exciting...I know you'll miss your life and friends in Boston but with your personalitys such loving people there are a new set of beautiful people that will welcome you...love you both very much...❤❤💥
I'm a type 1! My friend Anna I mentioned yesterday had diabetes as a complication of her CF. I hope the side effects settle. If you can manage a banana with peanut butter I find this great to stabilise me when I'm running low. Hypo's are draining aren't they? Akso mindfullness is fab Peter! Keeping you in mine and my husband's prayers ❤
Have you thought about having a stair lift installed if the stairs get too difficult for you? (the chairs that they advertise for the elderly that go up and down on a track on the side of the stairwell) It would allow you to still access the whole house.
I keep rootbeer barrel candies (the natural ones) on me at all times for blood sugar drops. Sucking on one or two tends to help me lol. Good luck, Mary!
When I sold my Condo and house shopping for our house I wanted a house with a nice yard and a couple of other things. We found the house of our dreams fully remodeled. Now saying this I didn’t think about the stairs. As you said I said oh the stairs won’t be a issue. With my back and my lungs there are times it’s very hard but its also good for me. As I get older and remove to where we would like to retire I’m going to look for a house with out a upstairs. As always your in my prayers
I just wonder Mary.. now I could be way off on this I know nothing about blood sugars, however if you happen to have a low before the dose, is there a way to drink just or something to get the sugars higher before taking that medication? I'm thinking like get the sugars high before so when your body starts dropping it doesn't from to a danger place.. Gosh I hope this makes sense. Love you guys so much. Stay strong you can conquer this!🥰
Just a thought, you have to have a high fat meal before you take the med right? I am diabetic and we have to always have either a fat or protein when we eat carbs ( sugar or starch) to slow down the absorption of sugar, so your body might need time to adjust to having more fat in your diet, as it slows absorption of the carb down, especially in the morning, most breakfast food outside of bacon is not that high in fat. Hopefully it settles down, you could try having a juice wait 30 min then have your meal or snack high in fat and take your pill. Good luck so happy you finally got this med!!!!!!!
Hi Guys , Mary I am glad the side-effects have not been too , bad , of course like you guys mentioned it`s still early. The low blood sugar could be just your body adjusting to being back home !! , it was a long trip. The down side to the up side is that if it is the new med. that is the cause you can always eat a banana and a Snickers bar !! Peter what about one of those self storage garages , not a whole big unit to rent , just a small one big enough for the boat , or , maybe one of the lakes has a marina nearby that is affordable enough to store it there , that way you would not have to haul the boat to enjoy it !! Like I have said , I think your new home is perfect , I truly do like it. Well guys have a great night praying for the best for you guys , and thanks for the vlog-update !! Take care , stay strong and stronger :) , Gary
One of the reasons for the high fat food when you take the dose can be to stop crashing blood sugar. My dad is diabetic and takes other medications and one of his meds does this to him. The doctor suggested taking the medication with a high fat food but good fats like nuts and dried fruits with full fat milk etc (those types of snacks with the meds, not pizza, lol twice a day) You’ll figure out what works. It’s trial and error. I really hope the vertex sorts itself out quickly as you’ve got a house to move to!! I’m including you in my prayers. Sending love to you all from a strangely windy and tropical UK at the moment. xxx
Boy, do I know about low/ high blood sugar, my husband has been insulin-requiring for 53 years with the last 30 years on an insulin pump. Boy, could I tell you some stories about low blood sugar he usually drops rapidly, like in the teens to highs, he has had when it was found at age 19 and just returned from Vietnam and went into a coma he was really high 900, we had been married 11/2 years at the time and was gone 13 mo in Vietnam. The Dr told me the only reason he made it was his good physical condition. I hope this pill works like the insulin pump has been a lifesaver to him. I am sorry I got carried away. Take care 🙏
I just got an insulin pump for the first time! I was diagnosed type 2 diabetic but insulin dependent due to many many other chronic Illnesses (I'm only 26 btw). But it is already making my blood glucose levels so much better! Besides today because I get IVIG and was given a big dose of iv steroids that made it skyrocket!
The beach isn’t but like two hours away! I live about half way between Raleigh and the beach! You may can use the boat at lake Johnson which is right in Raleigh but I’m not sure
Thank you Mary for writting back when I left a comment on your facebook. Made me smile ohh Ron is my fiance who has renal failure,and now cancer in the kidney.Also if I did not mention he also had open heart surgery double bypass. Ok so enough about my life ...I want to say this YOU CAN DO THIS Mary ...You have a great attitude and your husband is an amazing ..As my Ron is. Much love Angie
I'm confused on which floor are you planning for the master bedroom, the second floor or the top 3rd floor? As far as the boat; they are fun and I loved having one, but as they get older, the maintenance cost goes up greatly. It's also not worth paying monthly storage for a boat. Just sell it while it runs good and find a place near a lake that will rent you one for a couple of hours when you have the need. You can always buy another boat after you figure out Mary's future health situation. I held on to my boat too long and a needed part was impossible to find, so I basically had to give it away. I love your new house. I bet you're very anxious to move. Lets hope the new meds work as desired. The though of you going through a transplant is very scary.
Can you put together a Playlist of all the vlogs that has Mary singing. I have a hard time finding them and would like to listen to them again. Especially when she's playing violin.
Day 2 on the new Triple combo medication!!! Also, some frequently asked questions 🙂
My dad works in Durham too! Maybe you are close to his lab.
Praying the sugar has nothing to do with the meds?
@@unlisted3035 That would be so fun!
When we moved as boat owners, we couldn't trailer the boat. It had to be sailed. So for a year, prepping to take leave from new job and sailing the boat which was moored, fee free, we were approached to sell it. We were lucky in as much as it sold for what we paid for it. We'd had about three wonderful years sailing open water in our area which was magical and we will never forget our experiences. It was sad but it was a choice that had to be made. It is probable that you may not have much of a chance for boating, if Mary's health is deteriorating.
You are young and you will have other experiences and one day you may become boat owners again. Take Ollie's boarding steps with, don't leave that with the boat. If you can find a safe, affordable storage area for your boat, would it really be worth the expense when you may not be able to be able to go boating with Mary. Any of Mary's family have space to stire the boat until you can sort things out. Not forgetting, it is easier to sell a boat in a boating area than if the area isn't into boating. Mary's health is the priority until she recovers from the transplant, right?
@@laurencliver6452 sometimes they do. Mary's team will know what to do, it happens with alot of medication to alot of people. Sometimes after the body gets use to the medication, it goes back to normal. This isn't a rare.
I live 20 minutes from Duke. Happy to give you boat storage. I even have two standard poodles!
Courtney Cox might want to DM them on Facebook so they’ll see it. They do get a lot of RUclips comments
Wait I think I went to high school with you. I'm Laney Portelance :o Maybe there are a lot of Courtney Coxs idk
Wow that's awesome that you'd even offer that, that's awesome to know the the Grey family is real out there and just good people... Why does this make me emotional? If it were me I'd feel so blessed to have touched so many lives
Courtney Cox how lovely of you to offer Courtney, that’s so nice of you. That fills my heart with joy. I’m in the UK with a big empty garage but don’t think that going to help them! 😂🤣👍👏🏻🤗
You two are such a sweet couple! I began watching your journey about a year ago, and I just love your positivity. Congrats on your new home, and I am praying that the new medication works for you, Mary!
I'm not on the triple combo medication but I have been on Orkambi and Symdeko which uses some of the drugs used in the triple combo medication. I had cf related diabetes since I was 16 and used a very small amount of insulin once a day. Once I started Orkambi and switched and continued with Symdeko, I have no longer needed to do the insulin and my sugars continue to remain normal. One very great benefit of these new drugs! I will say at the start the sugars were rocky but after a few months everything stabilized! The docs were shocked as they were not aware of this during the trials.
30pianogirl that’s fantastic news. 😊
you are among some of the first to have this? Not the first, but this is still a new medication! So thank you, also I know you NEED this but your taking this and also keeping note of side effects... will help others. Also I was telling my friend about CF, one I had not spoken to for years. and she was "How do you know so much?" and I was "Well my friend Mary has CF!" Then I showed her the youtube. But, you ARE a friend to all of us, and Peter and Ollie also! I taught her that a transplant is NOT a cure, but to remember, most of our life is about managing what we have to handle. Be it our health, our family, our loved ones and friends our job our pets... we manage life and help each other also!
I do the same- I'll talk about "My friends Peter and Mary" 😂
Chaos is a butterfly... beautiful, colorful, flapping wings, flitting from one flower to the next for a meal. So too is life.. until we sit down and breathe to watch those beautiful colors as they float by, landing ever so softly on the flowers we so lovingly planted. 💜🦋🌻
What a lovely way of viewing life 😊❤️
I could see an artist's easel in that beautiful pew room with sunlight pouring through the windows and Mary happily drawing and painting. So much to look forward to. Give the meds time, the benefits could be life-changing.
I admire how you two think through decisions and how you balance each other through the parts of that process that you share with us. With all of the experience you two have managing multiple complex projects, I think that either of you have enough experience now to be hired as Senior Project Managers in most any industry!! ;) Living in the present too here in PA. Take care. Prayers daily!
Your home is in your hearts. That is why you always adjust.
I am a lot older than you two - it makes me smile and makes me happy that you are so wise about adapting to places and finding unexpected things to love about them!
While at first I thought you really have everything coming at you at once, this video made me think maybe it's not so bad.
- The move will manage to take away some focus on the Vertex combo.
- The move will also show improvement better: new climate, renovated house, new fibres, new germs, additional stress and physical exhaustion. Not a bad testing ground for a new medication ...
- Last but not least: possible improvement will come very handy during moving ...
Thank you very much for answering questions that I posted, too!
Thank you so very much for sharing! Kind regards from Susanne 🤗!
So happy for you to be finally taking this new medicine.
Your new house is perfect and like you said you will adapt as needed. We bought our house from my dad and we started to care for him, we were one bedroom short because we have two kids and us. So for us to adapt we built in the formal living room which in reality was unused space. My dad had since passed and that “new room” has been one of our most used rooms over the years whereas before it wasn’t used at all. You figure it out like you always do.
You may need to have a milkshake with those morning doses... Praying over here for things to go smoothly and WELL!
It might have something to do with the fact that you have to take it with a fatty meal. Fat takes longer to metabolize. Maybe you could try adding a simple sugar with the fatty food, like juice or candy. 🤷🏻♀️
You picked the PERFECT house...location to hospital was the right priority....anything else of course you can make it work. Lots going on but you only have to do it one day at a time. Love from Scotland.
Love you all so much! It is so refreshing to find a couple that has an outlook on life that is so positive. I thank you for sharing your journey and allowing us to be apart of your family. Watching your videos help me so much, as a wife of a CF husband. For people who don’t live the reality of CF on a daily basis, it can be difficult to understand, but you both share the journey beautifully! Again, thank you! Hugs, Love & Prayers being sent your way!
I’m a teacher and I went back to work today. I put your sticker “laugh every day” on my file cabinet and your whale picture on my wall. Love them!
I haven't even made it past the ads yet but I just want to say that I've have been praying for you and I'm sending love your way!❤️
Elizabeth Mion thank you so much Elizabeth!
I just love love love the way both you and Peter make the best out of everything. You both turn what others would see as a negative into a positive!! Possibly not being able to take the boat .. love the way you said it Mary.. maybe the boat was meant for that season of life. Your attitudes are amazing!!! Sending you, Peter and Ollie lots of Love ❤️
You both inspire me. I am 66 years old, and I am no way as wise and as positive as you both. Good for you both.
I am a pastors wife, too. 😊 Praying for you, Mary. Holding up Peter and Ollie, as well. God bless you both as you walk your cystic fibrosis journey with Jesus in the lead. Always trusting, ever hoping. 😁💕🙏
I have health issues time to time, the worst luck, very hard and dark times..watching what you guys go through and how positive you are through this journey, I love you all so much ! 🖤
I love being on this journey with you. You're memories of past places makes me think back to my past and where and when I was living.
You two are very adaptable to change. That is a gift and I think it will enable you to endure whatever comes your way beautifully.
I had wondered about the low blood sugars, good to have that explanation. I am watching this months later, hundreds of low blood sugars, a move, and a vastly improved Mary! What a joy! The way you two treat each other is am example that even someone who has been married a long time can learn from. 8 )
Stairlift could be a possibility. Definitely check out storage options.
Yeah the stairs at there new house is pretty much perfect. No turns a complete straight shot.
@@meganlovesdisneyandcrafts4780 yes but were talking about those times when she can hardly function. And just might need to get upstairs or down. Not all the time.
We literally moved to a one story house after investing in a stairlift that just never really worked that great... That was the #1 reason, stairs are not my friend
You might consider a Murphy Bed in a wooden closet.... maybe to match the pew? We moved so many times across long and short distances before my husband settled into his Ministry. He’s semi-retired now, but still supervises student pastors out on the northwest coast of Canada... it’s only a 6+ hour drive depending on the weather, road conditions, mud/rockslides. Life is most definitely an adventure!
I love how you can always put things into perspective......you are happy to be alive and have each other...the house met all the priorities...close to hosp and a safe place for Ollie to run around and the rest you can make work and learn to love! We can all learn a lot from you both!
I just got out of the hospital after having surgery on an abscess I had. I thought about you guys an watched a vlog to help me get though. I'm at home recovering now and doing much better. Hospitals are no fun but my nurse was awesome!
Low blood sugar is scary. Thankful for technology and Ollie and Peter to be there for you. I see so many potential ways to arrange your NC home and that’s exciting! I will pray about the boat situation as I continue to pray for the health improvements and all the other things happening right now. As always, love from Alabama ❣️💕💕
Beverly Burris i think she takes insulin maybe she doesn’t need it.
ArmySister2 wow! That is low. I hope you have support in place to help you at those times. Have a blessed day.
ArmySister2 I’m glad you are doing ok and have support at home. 💜💜💜
No matter where you go, there you are. And there you are is always between where you were and where you are going.
Mary and Peter you are absolute gems. Thankyou for opening your life on such an intimate level. I always find something inspiring to take with me watching your videos as I navigate my own chronic illness. And also for showing us what real love and commitment looks like. Greetings, love and blessings to you both from Melbourne Australia 😊💜💋
I can’t believe you have been in that current house 3 years wow! I remember when you first got there, God is faithful and good!
I think the exciting part will be the renovation projects you guys will take on over the months and years to adapt to your life style as you guys grow together. Calling a new and hopefully permanent place your home is exciting and I know I can’t wait to see the fence for Ollie since I am a dog/animal lover and I will be so happy for that renovation project!
I say make the pew room your bedroom when you get the whim! Who needs to make it formal with heavy doors and walls. Sunshine and windows and a comfy mattress is all you need.
And I LOVE the attic...or 3rd floor!!
You answered the very questions I've been wondering about the most. The way you approach life shows that you two are wise beyond your years. Faith in God does that I believe. Love you . ❤
I hear you Peter. I’m in a hard in between currently. I’m really trying to be present in the moment, but I am struggling. I admire how you and Mary support each other.
You’re new home is BEAUTIFUL!! Congrats 🍾🎉
So pleased that Mary has finally been approved for this drug hope all works out well for you
I’m right there with you three on this journey and I’m so excited for all the good things and good times to come. :-) and yes, I like what you said Peter, “learn to love “ what you have, so very true sometimes, sending my love and hugs to the three of you, see you tomorrow!
While your waiting to move into your new house you can use Pinterest to pin ideas for all of your new rooms! Have fun!
I needed this message today of living in the in between. Moving across country in two weeks and I’m wrapping up work while looking forward to the next adventure along with being nervous about the move. Trying to be fully present!
You both are rockstars in so may ways. Staying present, seeing the positive which doesn’t mean you don’t live in the real world and bringing hope to so many. You choose joy ❤️❤️❤️
I’m happy to hear that there’s not crazy Side effects and like Peter said hopefully your body is just adjusting to the new drugs, I’m really rooting for you and that with the new home and the new drug it’s a sign of really good things to come 🤞🤞😊
Ok maybe we all should vote about the boat 😉 I vote you definitely keep it...also as another comment said Mary you didn't cough once in the video congratulations 👏👏👏... could this be an improvement in one day on your new med ??? Praying it is
Congratulations again to you both on the new house and the medication trial. You two are wise beyond your years in your approach and view of life. You are such role models for other young couples and I hope many take notice. You are a wonderful example of grace and gratitude to all of us, young and old. Best wishes always.🥰
Wow you guys!! I was totally not expecting your house to be so big and amazing! Having only seen the garage and the kitchen and those rooms down there and just your bedroom upstairs in the videos when you first got there I was under the impression that that was all of it besides maybe a second bedroom and basement. So when you turned and walked down the upstairs hall to three more bedrooms and another bathroom and all those closets I was shocked by how big and awesome it is! Then suddenly the hidden staircase to the amazing loft with that unbelievable Hollywood style closet with it's own island and that freaking shower up there holy cow!!!! I am so so so happy for you guys. Peter you did SUCH a great job finding that gem. It's perfect for you two for having family stay if and when Mary has the transplant.
Speaking of....I am SO excited to see how Mary does on the new modulator drug! My friends (brother and sister with CF who are now 38 and 40) have been on it for the trial and they are doing amazing!! I knew they were doing a lot better because of a new med but I didn't know they were doing a drug triel so I am assuming it was this drug that they have been on. I'll have to ask them. Watching you guys helps me learn what they are dealing with without prying and asking them a bunch of questions. They deal with it more privately and don't talk mucb about so I love how much I'm learning from you. I saw a picture of CF lungs after transplant (the ones they took out) and it was crazy. Now every time Mary has a coughing fit I picture her lungs struggling like they are little characters with eyes a nose and mouth and they look like the lungs I saw. That's probably really weird but you guys always talk about her body as if it's a whole separate being that needs things like a sick pet. So the little spotted lungs characters that cough right along with her makes me feel extra sorry because now I'm concerned for Mary and Mary's lung creatures. Uh.. yeah. Anyway i really hope this drug helps you in such a huge way that your transplant is put off indefinitely. And to see you feel better would be absolutely amazing!!! You're on my mind a lot right now and I just hope it all goes your way. You deserve a break from it all.
Mary you look great! Praying this new medicine isn’t the cause of your blood sugar issues. You and Peter have so much going on so remember to give yourself some grace. You’re doing an amazing job! In your vlog of the new house you were wondering how cold it gets in Durham, it’ll be cold enough for a coat and to run the fire place. You’ll get snow a few times a year and you will have more ice than snow.
Looking forward to seeing where you put the succulents!! :)
If you love the time you spend on the boat, make it work! Perhaps you can find somewhere to store it, maybe you can rent a space. Maybe you can find friends or family that have space for you to store it. Maybe friends or family would appreciate the boat and let you use it when you're up for it! You guys can always find a way to make it work!
I love the special relationship you and Peter have no matter where you all are you will be happy Mary prayers are continuing for you keep the faith🌱🌾
I bet you can find a place to store the boat cheap, like they have boat yards in Juneau ak where I am from, or just a storage lot where people park cars trailers boats etc. Also a good possibility is to find a person with room like on Craigslist or by putting a request up on your new churches bulletin board to see if anyone has a pasture/driveway/space where you can park it for cheap.
I really hope you can sort the boat situation out and can keep it, Mary you totally light up whenever you go out on the boat and look so care free, please try and keep that little thing for you guys, you deserve to enjoy Every bit of happiness that comes your way ❤️
Can you leave the boat with at Peter’s mom’s house or Mary’s parents house? Or is it possible to put a gate on fence line and park boat in backyard?
I think Peter did a great job in finding the house it doesnt look a fixer up..to have to make it "work.' Kudos to the unsung hero 😁
I just had hand surgery and my recovery includes watching your videos. Lots of prayers for the new medication. Hopefully the blood sugar sorts out for you. No spaced out Marys are allowed!!!
I hope the new medication continues to go well. You are right you learn from each living situation. There is always some type of comprise with home buying, and as you said you try to get your must haves for a home. I am excited for you all to have a new house to love and make home!
Yay! I'm so excited to follow along on this journey. Sending positive thoughts and prayers!
I am so excited to see how this medicine works for you!!!! I pray it gives you some relief!!!
Praying for quick & easy adjustment to new meds. Stay happy
I love your channel so much!!!! Your personalities are the best!!!!! I get excited everyday to watch you!!!!!!
Right? I have never seen two people that fit together so we'll, it warms my soul to see their happily ever after
Been praying and thinking of you all day. Wearing my “Do What You Think You Can’t Do” Frey Life T-Shirt. Tackling boxes and settling in a new city while loosing one’s peripheral vision is a challenge. Lol. Just moved into my new ADA SEC 202 apartment in Denver to be near Colorado University Hospital for advance care. Maybe getting a shunt (surgery #17) later this year to save my eye sight. Have suspected IIH that is like having a large brain tumor. Too much cerebral fluid in my right side of my brain. Crohn’s, EPI, Asthma, Celiac, and others are semi stable. Migraines and symptoms from IIH are through the roof. UGH.
Jesus is in control. So working on getting stronger and settling up my apartment for the future encase my eye sight gets worse. Also in process of transferring all my care and services from one state to another. Nightmarishly craziness. Definitely a new season in life.
If all else fails, Peter can throw you over his shoulder to get upstairs
You can always put in a stair lift for the stairs. My sister in law has a seat that she sits in that takes her upstairs. You can also move it out of the way if you want to walk up or down the stairs.
I love the attitude you guys have on your new home. you will make it work. I had just made an offer on my first home and it was accepted. I to had the attitude of I will make it work no matter what.
Love the positive thoughts on the boat! I have to tell you Mary, I know it has only been a couple days but as an “outsider” you do not sound as congested already on the vlog 💕💕 and you hardly coughed at all! hope the blood sugar gets under control too 💜💜
I am so excited for you all, and also I am sending good vibes that Mary will have no other side affects wouldn't that just be wonderful....
Since the yard isn't fenced yet, you can always have an easy access gate put in and just park the boat beside the house behind the fence.
I'll bet Olly will miss the snow when you move. He always looked so happy playing in it in the winter. Good luck!
They get snow in North Carolina. Not as heavy but it snows.
We are moving too, so I totally get "the in between" thing...leaving behind things that make you happy, but yet looking forward to a new adventure!
Oh Ollie boy, your so adorable. 🐶
I’m keepin’ the faith Mary, keepin’ the faith!
Always. ✝️
Beta cell function is linked to CFTR function. This is super common with the triple combo because elexa helps with CFTR function. You likely go low prior to elexa because you’re going high 30-60 minutes after you eat - you’re likely well over 200 and those with CF have a lack of first phase insulin response which is why everyone’s body over corrects. Ironically the solution is insulin so you don’t go high 30-60 minutes after eating and therefore you don’t get a large 2nd phase insulin response
I am excited to see what the future holds for you guys. I pray that the new medicine improves your life Mary.
You guys have to watch the kids baking championship, because there is a little girl on there named Tori, who has CF. and she seems so sweet and positive!!! reminded me so much of Mary!!
So sorry for the problems with your new meds! I'm hoping you're body needs to adjust to them ! Pretty soon you will be in your new home and you will adjust and adapt to a new environment it's quite exciting...I know you'll miss your life and friends in Boston but with your personalitys such loving people there are a new set of beautiful people that will welcome you...love you both very much...❤❤💥
I'm a type 1! My friend Anna I mentioned yesterday had diabetes as a complication of her CF. I hope the side effects settle. If you can manage a banana with peanut butter I find this great to stabilise me when I'm running low. Hypo's are draining aren't they? Akso mindfullness is fab Peter!
Keeping you in mine and my husband's prayers ❤
You've also been through/continue to go through a lot of stress and travel. That'll mess with your blood sugar, also.
Praying for you Mary. Living for each day is so important. I have health issues also and I find that to be so true. Love you guys. :)
Have you thought about having a stair lift installed if the stairs get too difficult for you? (the chairs that they advertise for the elderly that go up and down on a track on the side of the stairwell) It would allow you to still access the whole house.
I keep rootbeer barrel candies (the natural ones) on me at all times for blood sugar drops. Sucking on one or two tends to help me lol. Good luck, Mary!
When I sold my Condo and house shopping for our house I wanted a house with a nice yard and a couple of other things.
We found the house of our dreams fully remodeled. Now saying this I didn’t think about the stairs. As you said I said oh the stairs won’t be a issue.
With my back and my lungs there are times it’s very hard but its also good for me.
As I get older and remove to where we would like to retire I’m going to look for a house with out a upstairs.
As always your in my prayers
Lisa Xxxx I was surprised to see that they bought a house with stairs.
My prayers are always with you Mary and Peter I hope you have a wonderful and blessed day 🙏🙏🙏🙏❤❤❤
I just wonder Mary.. now I could be way off on this I know nothing about blood sugars, however if you happen to have a low before the dose, is there a way to drink just or something to get the sugars higher before taking that medication?
I'm thinking like get the sugars high before so when your body starts dropping it doesn't from to a danger place..
Gosh I hope this makes sense.
Love you guys so much. Stay strong you can conquer this!🥰
Been praying for you and the new medicine to help you feel better!
Ahh I hope you can take the boat. Ollie loves swimming so much, and Peter loves the boat, but I understand there is compromise.
Just a thought, you have to have a high fat meal before you take the med right? I am diabetic and we have to always have either a fat or protein when we eat carbs ( sugar or starch) to slow down the absorption of sugar, so your body might need time to adjust to having more fat in your diet, as it slows absorption of the carb down, especially in the morning, most breakfast food outside of bacon is not that high in fat. Hopefully it settles down, you could try having a juice wait 30 min then have your meal or snack high in fat and take your pill. Good luck so happy you finally got this med!!!!!!!
Hi Guys , Mary I am glad the side-effects have not been too , bad , of course like you guys mentioned it`s still early. The low blood sugar could be just your body adjusting to being back home !! , it was a long trip. The down side to the up side is that if it is the new med. that is the cause you can always eat a banana and a Snickers bar !! Peter what about one of those self storage garages , not a whole big unit to rent , just a small one big enough for the boat , or , maybe one of the lakes has a marina nearby that is affordable enough to store it there , that way you would not have to haul the boat to enjoy it !! Like I have said , I think your new home is perfect , I truly do like it. Well guys have a great night praying for the best for you guys , and thanks for the vlog-update !! Take care , stay strong and stronger :) , Gary
Think positively Mary! Still praying for you!
One of the reasons for the high fat food when you take the dose can be to stop crashing blood sugar. My dad is diabetic and takes other medications and one of his meds does this to him. The doctor suggested taking the medication with a high fat food but good fats like nuts and dried fruits with full fat milk etc (those types of snacks with the meds, not pizza, lol twice a day) You’ll figure out what works. It’s trial and error. I really hope the vertex sorts itself out quickly as you’ve got a house to move to!! I’m including you in my prayers. Sending love to you all from a strangely windy and tropical UK at the moment. xxx
Boy, do I know about low/ high blood sugar, my husband has been insulin-requiring for 53 years with the last 30 years on an insulin pump. Boy, could I tell you some stories about low blood sugar he usually drops rapidly, like in the teens to highs, he has had when it was found at age 19 and just returned from Vietnam and went into a coma he was really high 900, we had been married 11/2 years at the time and was gone 13 mo in Vietnam. The Dr told me the only reason he made it was his good physical condition. I hope this pill works like the insulin pump has been a lifesaver to him. I am sorry I got carried away. Take care 🙏
I just got an insulin pump for the first time! I was diagnosed type 2 diabetic but insulin dependent due to many many other chronic Illnesses (I'm only 26 btw). But it is already making my blood glucose levels so much better! Besides today because I get IVIG and was given a big dose of iv steroids that made it skyrocket!
Your positive outlook on everything is such an inspiration!
Can you watch what you eat prior to dosage? Different food that might level blood sugar
Loving these longer videos. I cant get enough of you three.
You said you have to take it with high fat food, fat also slows the absorption of sugar in your blood stream, that may be it too.
The beach isn’t but like two hours away! I live about half way between Raleigh and the beach! You may can use the boat at lake Johnson which is right in Raleigh but I’m not sure
You can bring the boat on down to Topsail Beach NC. Its only 2 hours away 😀
Thank you Mary for writting back when I left a comment on your facebook. Made me smile ohh Ron is my fiance who has renal failure,and now cancer in the kidney.Also if I did not mention he also had open heart surgery double bypass. Ok so enough about my life ...I want to say this YOU CAN DO THIS Mary ...You have a great attitude and your husband is an amazing ..As my Ron is. Much love Angie
Hugs!
I hope you can keep the boat. Going out on the lake is a big thing here in the south
so excited for your new home and new medication.
Jordan, Kerr and Lake Wheeler. So many lakes near you! But like you said it will work out.
I'm confused on which floor are you planning for the master bedroom, the second floor or the top 3rd floor? As far as the boat; they are fun and I loved having one, but as they get older, the maintenance cost goes up greatly. It's also not worth paying monthly storage for a boat. Just sell it while it runs good and find a place near a lake that will rent you one for a couple of hours when you have the need. You can always buy another boat after you figure out Mary's future health situation. I held on to my boat too long and a needed part was impossible to find, so I basically had to give it away. I love your new house. I bet you're very anxious to move. Lets hope the new meds work as desired. The though of you going through a transplant is very scary.
They said they'd be using the 3rd floor as an in-law suite for her mom to stay in when she is there as her caregiver during transplant.
Mary you seem so much better already !!
Bless you both 🙏
Can you put together a Playlist of all the vlogs that has Mary singing. I have a hard time finding them and would like to listen to them again. Especially when she's playing violin.