LEARNING MY NEW NORMAL ON TRIKAFTA! 💊

[@thefreylife]

Sometimes my brain is up for more than my body 🤪 but I’ll take whatever my body can give me 🙂

[@krisfightingfibromyalgia3099]

The Frey Life I know what you mean Mary

[@tamberjune]

Same here! That's when I get out a notebook and make lists of the things I want to do and then I try to just rest and think about the future! Like your trip! Hope everything is great and I am so glad you are getting out more 💜

[@Komskimd3]

The Frey Life I’m Catholic and was baptized as baby. I don’t under how a 13 year old baptized ??

[@Lyn4817]

We are simply happy with the changes you have experienced from your new medication. Ollie will love his new backyard ro run around in, once the fence is finished. He must miss his front yard.

[@Maria_Espino]

The Frey Life Mary you continue to be such an inspiration to me and so many. We love you sooooooo much! ❤️

[@StephiLee]

thank you for documenting your journey with trikafta... i have a lot of anxiety when it comes to medications, but watching your experience with it makes me less afraid to start it, and excited to see its impact! you guys are great :)

[@lorifox4699]

Hey stephi lee great to see you here!!

[@tabbylynn4130]

Stephi!!!! Hey

[@amorgan4984]

I'm so happy to see Stephi Lee here!!!!

[@tamberjune]

Oh! I wanted to share my baptism story! I had been given increasingly less and less "time to live" and I was on so many medications and my body was failing and so my best friend had been talking with me about getting baptized herself and I knew I wanted to. So we decided to do it together!! However, all of the medications I was on and everything that was messed up in my body made my brain shut down and I was living in the hospital or emergency room. I don't even really remember that day. Only about two moments and the water being cold (Pastors pool!), Well also being with my best friend. So, when I crazily surpassed all of every single doctors expectations and made it through (by God's grace, glory, and mercy)....and Was able to have a conversation again and had to relearn how to walk and talk and eat and brush my teeth and everything. I was 19 and I kept pushing because I believed God walked with me every step of the journey. So, this past April I was Baptized in front of my Church Family and my parents. I am so glad I did it again and I have my baptism certificate in my bible pocket, until I find a nice frame for it because that baby is going on the wall. Both baptism's were filmed but the difference between my abilities and my cognisance in the two videos is incredible. I realized how far I have come when I watched it and my family were crying and so was I as I said those words and really understood clearly what I needed to do to help me in my faith journey. It was the best day of my life, to this day.

[@DawnRenae22]

Tamber Grable lovely story. Thank you for sharing! God has a purpose for each of us... you got a little nudge that he isn’t done with you. May your life be filled with blessings that keep you inside His perfect will for you.

[@tamberjune]

@@DawnRenae22 Thank you so much! My life has gotten better since then and I am glad we have a community where I could share this story and get positivity!

[@gorjanninkovski935]

a trifecta in racing is when you are able to predict the winner second and third place finishers in a race

[@mm9374]

Having been in the pharmaceutical industry, and also privy to some of these things, I can almost guarantee that the trifecta/Trikafta similarity plus the “three-way winner” allusion was a big part of the naming considerations when they were coming up with the brand name for “the triple.”

[@nickfrancis3784]

Hi ! CF'er here from London, UK You guys are the most positive and uplifting people to watch on KZbin. I love your attitude towards life even when things are so hard at times. Just had to say! Thank you for a great and insightful channel. Been watching for a while but never said hi :) Good luck with the Trikafta, all the very best.

[@marycunningham4352]

New babies can be exhausting for the healthiest of people. It doesn't stop you from loving and enjoying every second. Have a safe and enjoyable trip.

[@zhammunta1091]

Your voice is healing omg so happy!!!!

[@dreamtraveldisney]

Love seeing Mary getting to do something she loves! Medicine can truly do some amazing things! ❤️

[@shelbeannwarner]

It looks like mary is gaining weight and her coughing is so much less violent. That's amazing!

[@jackiehoward7300]

I’m so very happy that you found trikafta. Praying for renewed strength and energy

[@thefreylife]

Thank you for your continued prayers Jackie! & we are so thankful for trikafta!

[@jackiehoward7300]

God is good

[@millerlena2208]

Never commented after 3 years of watching. Super proud of theprogress and life your living

[@thefreylife]

Thanks so much miller lena! & we're so glad you're a part of our Frey Life family! :)

[@DawnRenae22]

Does the cf community acknowledge the spoon theory like the EDS & dysautonomia community does? If not, it’s worth looking it up. It’s basically just a visual concept to help us preserve and budget our energy.

[@ChrisVSCysticFibrosis]

I cannot wait to start Trikafta, Slowly but surely it seems like it is doing wonders for you! Hope the NHS approves it soon!

[@olgasantiago1366]

hi Mary and Peter, I just received the mug and a cute little pouch. Thank you. I went back into your store and ordered a hoodie and a Vneck shirt. Have a great day.

[@rmjames83]

I worked out u can freeze (cold smoked-it’s the “raw” textured kind) salmon u get in the vacuum packets! Quite often here, u can get them at reduced price close to use by-just freeze immediately & defrost each pack as needed! It’s awesome added to a garlic cream sauce for pasta (extra calories?!?)+If u like dill, adding a little is even better-but only a little, as dill can be so strong! A quick easy meal!

[@EljinRIP]

I am really so happy for you getting this medication and changing so much of your life and future.

[@fralinsandfriends]

Mary, I was doing the same thing when I'd read it, I'd think Trifecta. 😂😂😂

[@robinhood4640]

Everytime time i had good periods there was always a little part of me thinking that i had at last come out of the tunnel. When my body told me this is not the case it was very disheartening. It never lasted, because being less often ill and having problems a lot less intense is a huge great step in the right direction. Being thankfull for what i gained outweighed the deception of what that little part of me thought i had gained.

[@kristawineburner5016]

I am so happy for you Mary that you have been able to babysit again! I know how much joy that brings your heart! 😊❤ I have been thinking about that weird rumble in your lung. Could it possibly be your lower airways that have had such reduced function, that now that you have such a lower amount of mucous that you are actually feeling them moving air in the alveoli again? Lol, just the paramedic part of my brain clicking away at that comment,hmmmm,lol! Oh the babysitting 😊 It is hard work, and I am so happy that you are able to do so many more things again! Almost every night I go to watch two of my grandbabies, I wear my "Do what you think you can't do" blue t-shirt😊❤ it is the v-neck and my grandson always tells me it is my heart shirt😇😊😘💙 Sending love to you all out there in need of it today and everyday!

[@sabslack]

I wonder if your body is just building up its "muscle" back after not being able to be so active for so long. Im excited to see what is to come this year with Tricafta!

[@arodriguez3178]

Slow down. Don't try to do everything. You may feel like superwomen but you aren't invincible. Take it easy don't push yourself so hard.

[@lezup]

Gotta find that wig. “Vertex lungs” love it. I’m glad you got to babysit. Kids always make me exhausted. But, it’s worth it. She is lucky to have you. Enjoy your trip. More time with salmon. 😆

[@fuzzywuzzy588]

When you get older that brain always wants to do more then the body .lol .

[@BabyBunch]

Mary’s cough is so less now it’s amazing. It’s like a “cold” cough or a normal clear your throat cough. I LOVE IT. Been praying for you guys and our Ollie boy plush stays by our family bible . Big hugs and we love you guys

[@thefreylife]

Baby Bunch thank you for your continued prayers!

[@melissacaudell1622]

Mary you and Peter are so cute together. I am so happy for you . Lots of hugs and prayers 🙏

[@thefreylife]

Awe thanks Melissa!

[@aliciamarrara4929]

Peter that was a good thought but when a horse wins three races The Kentucky Derby, The Precnis, The Belmont Stakes that is called The Triple Crown

[@fralinsandfriends]

When you feel better than you have for a long time, it's easy to overestimate your energy. You'll figure it out. 😃👋

[@thefreylife]

Thanks Fralins and Friends!

[@johnsonfamilyvidsvlogs3745]

Glad you got some sweet baby 👶🏼time.👍🏼

[@maryreynolds5310]

Peter, you will get there, and get ahead with your podcasts. I remember a friend of mine saying a similar thing when she was doing her podcasts. Her podcasts were about talking to young people about pretty much how to go with the flow of living in an adult life as a younger person. Teen years. You would be surprised at how it truly helps so many. Mary, this may not ever be an issue, I don’t know as I’m not educated on the triple combo...Now, I don’t want to disrespect you or make you feel I’m saying you don’t know what your doing, because you absolutely DO! Anywho, it has crossed my mind several times about this and concerns me. It concerns me because again, I’m pretty clueless here, and because I care of course....I find myself worrying about how sometimes you will push yourself when you already might be not at your best, you get up and do it again maybe because your feel great..so you push that great to the limit. Ok, let me get to the point here...Would your medication meet its limit because you push yours? Does that make sense? Like give your body a few months of complete chill time to let the medication get in your system, and let it get to its maximum strength so to work correct. This may not make a lick of sense, just me being over concerned I’m sure.

[@thefreylife]

Mary thank you for your thoughtful concern and words of encouragement!

[@maryreynolds5310]

The Frey Life Thanks, your too kind. What I wanted to say to Mary was meant to be simpler then it came out..lol Love all 3 of ya xo

[@DawnRenae22]

Hmmm you made me look up trifecta. Even though I use it all of the time I wasn’t aware of it’s true definition. It does have a horse related definition and it means a run of three grand events. In the EDS community it’s used to describe having EDS, POTS, and MCAS.

[@caprialnichols7659]

Loving the vlogs keep it up Mary and Peter

[@Dreamer5211]

Hi Guys , The Trifecta = Win / Place and Show !! or , more energy / less mucus and more smiles !! I hope you guys have a pleasant and safe trip , O___ your podcasts are just fine !! , thanks , and thanks for the vlog , take care , Gary 

[@christytubbs3266]

Loving your podcast! I listen to it in my office. My office mate enjoys it too!

[@thefreylife]

Thanks Christy! I'm so glad you (& your office mates) are enjoying it!

[@vtlgbtbt4]

I know exactly what you mean. Today was definitely one of those days you were describing, for me, where it feels like you're on a treadmill.

[@thefreylife]

Valerie I hope your weekend is going well!

[@hollya6768]

Oct 19! My husband’s birthday. 19 seems to run in the Frey life. 😊

[@callabeth258]

Trifecta in horse racing is where you bet which 3 horses will come 1st 2nd and 3rd

[@nancywilliams6777]

The Trifecta bet is when you choose the three horses in order, first, second and third places. If you’re right you’ve won the Trifecta.

[@Purplebutterflychic]

Yes I am in North Carolina also and I don't like the cold either. But I am thankful that I am not up north where it is even colder.

[@krisfightingfibromyalgia3099]

New normal has one great ring to it 💚

[@jmbtrain1]

Peter is right. Trifecta is the best of the three biggest horse races in the country. So yes the best of the best. I like it called that. I should be starting soon.

[@carlaschurman4508]

Thank Heaven for the improvements. 💗💗💗

[@thefreylife]

Yes! :)

[@susanharris1285]

Your body is just giving you a message time to rest , love and prayers always hi ollie

[@kathijones4553]

I love the new coffee cup! It's sooooooo cute!!!

[@thefreylife]

Kathi I'm so glad that you like the new design!!

[@2listening1]

I thought you were going to say at the beginning, "....today, I learned, I am not yet quite superhuman!"

[@kikyamart8749]

Raw fish has so many nutrients, my son with CF, I have him eat it quite a bit. Also, steak tartar... Also, he's getting ready to start Trikafta in a couple of days...

[@mpw3k]

The gift that keeps on giving 🤣🤣🤣

[@karenvincent5202]

My young friend Hannah just started Trikafta. Praying it works for her!

[@thefreylife]

Karen that's so exciting! I hope it helps Hannah a lot!!

[@SuperMissblueeyes]

It brings me so much joy to see you doing so well. God is answering many prayers for you from many people.

[@thefreylife]

Thank you for your continued prayers SuperMissblueeyes!

[@SuperMissblueeyes]

@@thefreylife No problem. Thank you for sharing your lives with us.

[@anneliharalson314]

Sushi burritos are AMAZING

[@thefreylife]

So good!

[@FreebirdTMH]

I know your funny little musings may seem silly to share with strangers, but I love them. I was widowed 7 years ago, and honestly those little things are what I miss the most. ❤️. Praise God for your increased Stamina!

[@fredahensley3853]

Means you win 1st, 2nd, and 3rd at the horse races. Same race and you bet on 3 horses and they came in 1, 2 and 3.

[@ErikaSynvillan]

I know exactly what you mean with the lung rumble, Mary. I've had it for a couple of days because of a cold and got an asthma diagnosis today. Here's to hoping it's only connected to colds and won't be cronic. 🤞👐

[@thefreylife]

ErikaSynvillan I hope you're feeling better!

[@christytubbs3266]

Wait! You were baptized on 10.19? AND you were outside in the rain at 10:19am? You Were baptized again by God with the rain! Amen

[@youser6088]

Sushi burritos! I had one in the Mall of America and it was so delicious.

[@thefreylife]

Cali oh yum!

[@anngee9534]

Just love you guys and thankful for you! ❤️❤️❤️

[@albertglass2594]

A trifecta is if someone says that three horses are going to finish in 1st, 2nd and 3rd place, and that is the result of the race.

[@loramarshall3517]

I’m not a raw sushi person either, but I really like California rolls!

[@JeremiahsLot]

Tri = 3 or triple Fecta = Effects Trifecta = Triple Effects

[@lynnrose7562]

You have been busy Mary. I think it may take some time to figure out exactly what your body can now handle. xo

[@debbiewillis9836]

My step Father used to make homemade smoked salmon and it was incredible. He built a smoke house but he make it look like an outhouse with a half moon on the door. As a teenager it used to embarrass me a bit but then it was just funny. He was a character.

[@thefreylife]

😂😂😂 debbie that's so funny!

[@rmjames83]

Sushi burrito?! What the?!? I love Bulgogi!! Here (Australia), u can get it pre marinated @ supermarket-just cooking needed!-AWESOME on a BBQ (?grill u call it?)-as meat is so thin, it only needs couple mins on a really hot flat plate BBQ/grill! Quick+easy meal! Just add rice/veg-perfect 4 our summer-I try to avoid cooking inside during our summer if I can-My BBQ is my bestie in summer!

[@thefreylife]

rachael that sounds delicious!!

[@Sarah20245]

Im a medical nerd so anything medical is fascinating

[@eafj90]

Bulgogi sushi burrito = Korean Japanese Mexican hybrid meal! 🍣 🌯

[@eej1983able]

Should I burst out at work at 1019am REMEMBER YO BAPTISM just to see the reaction lolol.

[@liwmld]

much love and prayers to you, my brother and sister in CHRIST.

[@thefreylife]

Thank you beauty and ashes!

[@denisejones7780]

I noticed you bedroom door with the cat door Peter, I'm sure you have a door somewhere in the house you can exchange it for since you don't need it. If it bothers you that is. A closet door somewhere maybe.

[@denisejones7780]

I have heart failure and my lungs can get fluid which I can hear in my upper chest like a crackle wispsy sound. Maybe now that you lungs are less full of fluid you have air and mucus so they can make noise.

[@thefreylife]

Denise Jone keep on pressing on!

[@charityhamilton2873]

That's good Mary that's so true

[@rae1957tn]

Mary sometimes you just can’t figure out what they want. My grandson loved blondes when he was young,he’s now 22 and I think he still likes the blondes.hahaha.

[@thefreylife]

😂😂😂 rae1957tn that's so funny

[@stephaniehowells2567]

Where y'all going?

[@rmjames83]

I don’t know if u will see this comment guys, but...where do u get ur tiny pots for ur succulents Mary? Does anyone else have any suggestions please? I need some tiny pots for succulents!

[@thefreylife]

Hi rachael, you can get some online (amazon) and a lot of stores carry succulent pots/holders too :)

[@jessnapier4149]

I am looking forward tomrrow vlog I am guessing you are going back home I will find out in tomorrow volg I am looking forward to so much

[@olingecko]

I love sushi burritos!

[@thefreylife]

olingecko they are so good!

[@b.wooten4505]

Trifecta/trinity great things come in threes

[@Athlete1015]

HEY! What's the PAINT COLOR called in the Frey house?? Love it. Thanks!! anyone know??

[@Natalie.D]

Do you still have to do vests and the other therapies now that you have improved so much?

[@thefreylife]

Hi Natalie, yes still doing a lot of my "old normal" routine with vests and meds :)

[@6272SLG]

Totally off topic - Why is Peter always dressed for cooler weather (both inside and out) than you Mary? Today he has on a flannel shirt, you are wearing a simple T. Most the time he has on a jacket and once again, you are dressed in a T. Do you need the house to be warmer?

[@nancypaulariel]

What is the medical app which records? I would like to recommend but can't remember the name...xxx

[@thefreylife]

Hi nancypaulariel this is the app: abridge.com/

[@Laura-xb2hi]

I can tell when you are tired and not feeling ok cause of your pink cheeks. I guess now you are on Trikafta you haved trade and now have to deal with other symptoms. Stay Strong.

[@Ridelesdowne]

Oh I love sushi burritos

[@thefreylife]

Riddlesdown they are so good!

[@BabyBunch]

Can you update on Ollie and CBD

[@melsgalleria]

We make our own veggie sushi. We don't eat raw fish either.

[@DC-bp8sx]

Do you both have cystic fibrosis?

[@landonarnold8617]

First comment nice vid what's the date in North Carolina

[@thefreylife]

Hi Landon! Thanks for joining us & reaching out - we're so glad you're a part of the Frey Life fam! & this vlog is from Nov. 12th.

[@landonarnold8617]

@@thefreylife I'm 13

[@bethbacon1968]

Little Einsteins 🤣🤣🤣

[@karbear26]

Yup I caught too!

[@bethbacon1968]

@@karbear26 sorry I have 4 great grand kids

[@penelopepolinsneemeyer4757]

Mary, you sound like a wonderful baby sitter xxxxxxxxx

[@thefreylife]

Awe thanks Penelope! :)

[@mattewalsh967]

10/19 is my birthday!!!

[@effytheone4192]

healthy people get super tired randomly too I guess it's not that sinister :)

[@nathantatosian280]

Hi Mary and Peter

[@connimace258]

You need to Pace yourself till your body adjusts more.

[@RedRoadRunner23]

💜💜

[@JMOBILEHITE352]

🙋🏽

[@Lyn4817]

It is looking like Ollie has retired. Has he?

[@Lyn4817]

@@meganlovesdisneyandcrafts4780 Thanks, I must have missed that or forgotten. Ollie is so adorable. Just as well the Vertex is working so well on Mary, it is wonderful seeing the amazing change in her. I noticed today that even Peter had an extra sparkle in his eye. I think their marriage is thriving with the new drug.