THERE IS BEAUTY AMIDST THE SADNESS (12.18.18)


There’s sad news all the time… in life. You turn on the news, there’s sad news across the world. I just had a very beautiful reminder that there’s also beauty. ♬ Don’t you think we’re better together ♬ ♬ Oh Honey ♬ ♬ I think we are ♬ Good morning, you guys. We are back from the hospital. I don’t know if you saw yesterday’s vlog, but we were at the outpatient infusion center for my first trial dose of a new antibiotic that I’ve never been on. And Peter was laughing as he was editing the footage from yesterday. Apparently we never like updated. So what did we need to update? [Peter] I put a little screen in. Oh, did you? Everything went well. Yeah, so I didn’t have any like, we pre-dosed with nausea medicine and also, my team started me. They talked to the infectious disease team, which… I think that’s probably the worst name for a doctor ever, infectious disease. Like ugh, but anyway. They talked to the ID team yesterday and they all kind of came to a conclusion about how we should start my… this antibiotic and so they do, they’re doing like five doses… at a small dose. So… Then we will bump it up. Like, double it actually. Yeah, so for the first couple days, I’m just on a pretty small dose. And I think that’s to hopefully like help my body adjust to it and so far I haven’t even been nauseous and I haven’t had fevers today. No fever, ah! So far, and so that was yesterday… We got home last evening, yesterday evening. We did a live stream. We ended the vlog. I was exhausted. All of that to say, that was really good that I was able to start that antibiotic and the home care company got it here before we even got home, so everything’s running smoothly. I’m so grateful to be home and not in the hospital. Okay… um… So, couple things… I just wanted to pick up the camera because I just, okay. Well, hold on. Sorry, having trouble getting my story out. There’s sad news all the time in life. You turn on the news, there’s sad news across the world. There’s sad news in your town. There’s sad news in your own life. There’s always brokenness and there’s been a lot of sadness lately… and… I just had a very beautiful reminder that there’s also beauty. I just got a call from my sister that um, she just had some good news and… I’m just thankful, and it was like… Wow, that is such a beautiful reminder that in the midst of a sad and broken world there is also beauty. So I’m just riding on some good news at the moment and also obviously at the same exact time remembering sad things so… It’s a weird dichotomy. It’s a weird juxtaposition of… the reality of the very realness of sadness but also the realness of joy and victory. And often those go hand in hand. But right now we’re eating. I am very grateful to report I just ate a whole chicken sausage. [chuckling] Uh… I’m just celebrating that I can eat. I just drank some coffee and I’m thankful that my system is handling these IVs okay right now. Peter made, I… whatever. I ordered chicken sausage from Walmart grocery pick up yesterday and he just made them and it was amazing and I’m not like… a huge meat lover, so whenever we find a way that I don’t mind meat, it’s always like, yes! So the fact that I ate an entire one by myself was huge. But do you want to talk to the people? [Peter] Yes, please. Here’s the people for you. Good morning guys. Welcome to another day. This morning I got up and mixed Mary’s new drug and… [Mary] Yeah, how did that go? Well, it went well, I mean, it’s just like mixing any other drug except that almost all of the drugs that Mary goes on when you mix it, it’s clear. [chuckling] And… [Mary] It’s like white powder. Yeah, it’s like white powder and it turns clear when you mix it with saline or sterile water. This drug is orange, like, bright orange. It was quite um, startling actually to mix it and be like this has to go in Mary’s body, because usually it doesn’t feel quite as chemically, even though it’s all the same. It’s all of these… chemical antibiotics that we gotta pump her body with but, anyways, hooked her up to that and I actually went back to sleep after that morning dose and slept in this morning, which was really good. We were both exhausted after yesterday. But it’s Christmas week. One week till Christmas from today. So we need to get our house cleaned for Christmas. Oh, are you excited about Christmas? [chuckling] It’s almost Christmas. In one week it’s gonna be Christmas morning. It’s Christmas morning! So I’m gonna do some cleaning. I’ve got a lot of work to get done for getting ready for Christmas services at church and it’s exciting! We’re really really excited about Christmas week and we’re trying to soak it up and enjoy being at home and one day at a time. So we’ll see you guys later. ♬ gentle Christmas music ♬ [pills rattling] I’m not sure you’ll believe me, but it is so many hours later. I’m back, I just got back in the bed. I’m getting ready to do my vest again and actually had a friend come over and we celebrated her birthday. I sat on the couch the whole time, but I was like, hmm, look at me being a human. This is awesome. I am still feeling okay from the new antibiotic. I did feel a little nauseous, but not awful and… I’m a little bit nervous… to…let’s see here. Today… So probably tomorrow is my last day on the half dose. I’m… fairly to moderately… moderately to severely nervous about going to the full dose, but we’ve got to do it. We’ve got to try it and that’ll be on Thursday. So… Whoa, I think I was thinking about it today and I think my lungs are a little bit better… as they recover from that cold… Thursday, when I first went to the doctor… and then Thursday and Friday I felt like my lungs were like a little bit better. Like, maybe the oral antibiotics had started working. And then I started thinking. Oh, maybe I don’t need IVs. [clears throat] But then Saturday and Sunday and Monday… the last few days have been like, my lungs are still very congested. However, they are less congested than… maybe, mmm, the beginning of last week. So I’m thankful to see that progress. I look forward to some… progress of steps closer to where I was before the cold. But again, just a reminder how dangerous a cold can be. All right, you guys. I’m gonna start my vest. So I’ll see you… later. Hey guys. I, uh, I was wearing a hat cuz it is really cold outside and my hair. Oh, you can’t see it. Did you notice that my hair is like all like frayed out from where the hat was? Anyways. I just finished cleaning up the kitchen, got all the dishes clean and I’m kind of determined to keep it clean until Christmas. It’ll be the Christmas week of… keeping the kitchen clean and our living room is clean. [Mary] Aka, we’re not gonna cook at all. Maybe. [laughter] No, uh, I don’t know. Maybe I’ll try to keep up with it but life just gets out of control sometimes. You know? I would concur. Did you tell ’em we had friends over? Yeah, you should see what he looks like. He’s got his head up. Look at him in his little Christmas sweater. He’s so cute. Yeah, we’re just like, really soaking up this view of the fireplace and the presents and Christmas week. What does everybody think? I think Ollie thinks it’s bedtime. [Mary] Look, the hair under his eye is like swooping out the other eye. Oh, yeah. hHe’s so cute, but… We’re just trucking along, doing… Sorry, Ollie. I was playing with your foot. Doing one thing at a time, one day at a time and… one IV dose at a time and trying to get this body… feeling a little better. Yeah, I don’t know. I don’t know what she updated you with but I feel like… today your lungs are like… blah. Yeah, they weren’t great but I did update them that I’m… well, it’s funny that you said that because I was like, I’m doing better than I was a week ago. Because well, I think… I don’t know. What do you think? I want you to be in it, too. I was thinking that the amount of coughing is less than a week ago because of the cold. But my lungs feel worse now. Would you concur with that? I… I might concur with that. I mean, when you still had the cold it was definitely out of control, but… Yeah. But I mean, I think you’ve definitely gotten worse from… Oh… From post cold. I think, but… Yeah, I think you’re probably right. I mean, I think… like, signs of infection wise that’s like ramped up. Yeah. For sure, but whatever. I, it’s sometimes hard to, to… evaluate what was when and when you’re… like, just doing day-to-day it’s hard to like remember, like… Yeah. Gauge where you are compared to a week ago or whatever, but… It’s, it’s clear that her lungs need help. Well, and I will say it’s not my typical to be like laying in bed, falling asleep at night and like really deep rumbly lungs like, wakes me up as I’m falling asleep. It’s like… these, I don’t even know how to explain it, but… Yeah. Whatever, all the mucus. It’s not surprising. It’s why we’re on IVs right now. So… Yeah. We keep on going and we’re cheering for you guys, whatever you’re walking through. Whatever the Christmas season or holiday season looks like for you. I was just texting with a friend just this minute, that’s why I want to like say goodbye to you guys and finish texting her, but… who’s going through… Hard things? The unimaginable. I mean… Yeah. That’s all I can say, like… So anyways. I just wanted to say that we are cheering for you and we’re glad that you can come hang out with us in our living room. We can’t make the pain go away, but we welcome you guys. And. As always. As always. [both] We will see you tomorrow. Good night. Good night Ollie boy. ♬♬

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Comments

  1. Just when your heart feels so sad, there’s a glimmer of hope. So today, I’m grasping on to that hope! Share your glimmer of hope in the comments and spread some encouragement!

  2. December 9 I was in a local store when I came across a woman crying. I had a bible verse printed on a business card that my pastor had given me that morning and I felt so compelled to talk to her. So we talked about how her daughter was going in for surgery on her spine, I just had my gallbladder removed right before thanksgiving so I was able to talk about how even though surgery seems very scary for us it’s very routine for the surgeon and that God guides their hands. My church is in a series called Hope is on the way so there was a lot about hope in the front of my mind.

    The verse on the card was (‭Deuteronomy‬ ‭31‬:‭6+8‬ NIV)
    6 Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”

    8 The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

  3. My son is 3 with Cf. I've been watching your videos cause you are an inspiration Mary! Thank you for posting the videos of your life, it helps others, especially this Mom.

  4. this bug that hit the east coast has taken a few, a young girl whos mother i had the pleasure of getting to know passed last night, another young girl is fighting for her life as i write this , my son ended up with walking pneumonia, i lost 4 days to it , its a rough one. glad you are feeling a touch better, and Peter always says stuff about his hair but to me it looks the same lol . and last sometimes i think Ollie poses like, perfectly for the camera the little ham

  5. I had a medical test that I thought would show really bad results. Thankfully, while there is some damage to my digestive system, it wasn't as bad as I thought it would be and the doctor was not super worried about it. Here is hoping that the biopsies come back fine and it will all heal over time. I really needed this vlog to look on the happier side of things. Thank you 🙂

  6. Peter please re-upload your spoken word video from last year! It literally blew me (and many other people) away!!! What a blessing that was!!!! Merry Christmas

  7. I’m a pediatric ICU nurse and our unit is going through a very hard time right now…we had 5 kiddos pass away in a week and everyone is literally devastated. But there are little moments to be thankful for…we had a meeting this morning to talk and process everything and it was such a blessing to be there for each other and support one another.

  8. When you said something about “the danger of a cold” I was like YES GIRL!!!!” I had a family Christmas this past Saturday and I didn’t know one person was sick until I heard her voice (well her lack of voice). She is my uncles step daughter and I rarely see her, and didn’t expect her to come actually. But, anyway, she thought she “just had laryngitis and not a cold” because she didn’t feel bad, just lost her voice. It wasn’t just laryngitis. I have a cold, sore throat, lowgrade fevers, headache, and even more tired than normal. It was so frustrating because then she sat near me when we ate, and because of her being newish in the family I didn’t want to be rude but I did say “it’s not you, I’m just keeping some distance because you could be contagious” to which she said she wasn’t….I was like, I have autoimmune diseases so I get sick super easy. It was like Monday when I woke up with a scratchy throat, yesterday it was worse, today my throat feels a touch better (that or it’s just numb from all the cough drops I’ve been sucking on). I just really hope I can kick this before Christmas, but it’s doubtful. I hadn’t been sick at all this year (aside from my chronic diseases) but that record is broken now. Sadly I also get migraines that begin as headaches so the headache with the “cold” has me on the edge of a migraine. I wish everyone understood how bad a cold can be for those of us with chronic illness and disease.

  9. Hi Mary and Peter, I agree with you Mary. I'm glad that your sister got good news. I'm so glad that you ate well. BONESY! I'm glad you're still feeling OK with the new antibiotic. Sending encouraging thoughts you way that when you change to the full dose everything will be OK. God bless you both. 🙂

  10. I have a strange question. Where did you get your pill caddy? I need to get one because the one I have is too small. It looks like the size you have would fit all my meds lol. Thanks.

  11. I know it's hard to say when we only see small portions of your day but…Mary, you look and sound better now than you did over the weekend!

  12. I hear ya honey I am so grateful your circumstances are "ok" and you are comfortable at home. ❤ its so interesting to me that the last few situations you have been introduced to new and more innovative treatments that you and your team have never tried but have worked for you successfully without frightening side effects. From the medication that boosts your blood cells…to the steroid treatment that carried you well thru the last month or so…to this new antibiotic…blessed are the people studying cystic fibrosis so as to bring these treatments to so many of you ❤

  13. Love hanging out with you – all the way from Scotland. Thankful for hopefully a peaceful Christmas- we've had lots that were not peaceful.

  14. Mary….Good luck with your new treatment. I have to do the same thing as far as slow small doses of my new meds, so my body can HOPEFULLY adapt better to them. It usually does really help me, so I am really happy to hear your team is willing to do this. I have been praying that they might do this for you, so I'm grateful for your success so far! Please don't over do on Friday (the day after your first 'full' dose). Everyone's obviously different, but that can be a tricky day. Best wishes being sent your way, and enjoy your holidays as much as you can! Even if it's at home!!! 🙂

  15. i think when they double it you may be hit abit harder with reactions just because of the jump but i think after a day you will be ok

  16. Can totally see you are coughing way less! I hope as well, that the" beauty amidst" your CF issues are all of us who love and pray for you both!!!

  17. You guys help find the good and positive things in life and before I started watching your videos I couldn’t do that by myself and no one could really help me do that either but when I started watching your vlogs and my life started to slowly turn around and while it will continue turning around forever I will always be thankful for what ever vlog I watched first and for what ever vlog made me wake up each morning to watch a new Frey life video😊. Merry Christmas 🎄 and thank you for what you do through your daily vlogs😀

  18. Being sick is no fun especially when we feel horrible and can’t do what we want to do it’s loosing hope that is no fun also I wish there was a happy pill 💊 that would take it all away

  19. So glad your team started you out slowly with your new meds. I think that was a wise decision. Hopefully it will lessen the side affects. Ollie looked so cute in his sweater!

  20. The peña family has a cousin I think and he has cystic fibrosis and he the doctors opened his artery instead of his vein and they stitched it up and he is not aloud to cough or move really quickly so keep him in your prayers his name is Jose

  21. My therapist and I were talking a couple days ago about how different my situation is now from a year ago. A year ago I was living alone for the first time, severely depressed to the point of almost going in-patient, it was icy and freezing right after Christmas. It was a horrible time. This year, I have a boyfriend (we met in the spring), he lives here and we're doing very well, and things are so much quieter. I survived nine months living alone and now I have a wonderful guy. Oh, and my guide dog is dreaming in the other room, woofing. Sooo cute. God is truly amazing, even in our darkest place, because He is there no matter what, and He sends people into our lives to help lift us up and whom we can pour our love into.

  22. Jesus is my hope and joy. This Advent season I’ve been reading Bible plans about how one of Jesus’ Names is Emmanuel, which means God with us. Meditating on this reality of God being with us at all times has given me more joy and thankfulness. God bless you!

  23. You are such an incredible beautiful young couple. May God answer all your prayers together. Ollie is too darn cute. Much love your way.

  24. I'm so glad you are sounding better.. every day I cheer for you that you can be home.. we are also blessed, so many flu bugs around our community and so far we have been spared.. my 9yr old cfer is extra tired but it's been busy at school getting ready for Christmas hoping she can get some extra rest over the Christmas vacation.. I think I could use some too 😉

  25. Mary, I'll say a prayer for you that the higher dose won't cause any more side effects🙏💜… On the bright side, I have a gastric emptying study tomorrow! Some might dread tests like this, but I have waited over a year for a specialist to order this! I'm looking forward to some answers, one way or another.

  26. Lost my dad 6yrs ago, my mom in June and a good friend who has the same disorder that I have three days ago. I’m finding it hard this year. It’s not been a good one. Had a three month hospital stay that I am still recovering from with all this extra sadness of losing two people I loved.

  27. My sister passed away from cervical cancer this Christmas eve a year ago. It really does not bother me much. Nothing could be done as it happened so fast. I don't think she ever went to the gynecologist to gave yearly pap smears done. It is a disease that could have been prevented.

  28. Man, you are so in tuned with Mary’s health. I’ve been married to my husband for 23 years and I could walk in with a missing limb and I don’t think he’d realize it.

  29. Glad your definitely home, and even though live day by day I still have to compare.. it looks like you guys are pooped out/tired.. your body is telling you rest girl lol
    My body is telling me to rest, but still makes me move, move till I can’t no more I don’t listen sometimes I guess to my body

  30. The hard time that I’m going through currently is that my insurance company has denied an appeal for the third time for me to get treatment for my eating disorder and trauma. Have been trying for over a year to get into this treatment facility and things are only continuing to get worse. Was told by the emergency room to either go out of state for treatment or stay home and die. Thank you for making these videos, you’re both such an inspiration to me.

  31. Glad Mary is feeling a bit better .. I’d like to hear more about you too Peter. Maybe more on your daily doings and how you are feeling. Some hobbies you may have etc

  32. OMG I've never related to anything more than watching Mary fill her pill organizer. 😂 I just did mine last night. I hate doing it lol.

  33. I have hope I will get a relief from chronic pain through weight-loss surgery. I have Undifferentiated Connective Tissue Disease. I have hope daily through the love of my husband.

  34. cracked up at the twinkly Christmas music and cobbler fill. I can relate. I/d be nervous about the antibiotics too! Praying for vast improvement by Christmas. I had pneumonia at age 5 and 12 and didn't want to eat and at five my parents did lights outside my bedroom window to make me smile. its the little things. So much roughness from that stupid cold! Big non-toxic hugs!

  35. Keep a positive view, if you feel better, take the win, i hope the atbx kicks in and side effects stay at bay and hope you two have a great holiday. Bless you both.

  36. We're all pulling for and praying for each other and that is a beautiful thing. I am the only caregiver for my mom/bestie always as she battles dementia. I am chronic with several illnesses. & it gets hard to get through the days and nights. YOU GUYS have been a great reminder to me to always try and stay positive and take one day at a time. I'm pulling for, Mary, with this new med. It is the wee hours of the 20th! 🎄⛄💖💗😊 I hope you know just how many you touch in a profound way by sharing like this. Big hugs & a scratch for Ollie when he is off duty. Hoping for a positive vlog today & that the new med isn't too rough!

  37. 0:58 I could agree with you, but ID makes me think of "identification."
    2:21 To quote from an episode of Kung Fu: "It is written in the Tao Te Ching. 'Under Heaven, all can see beauty as beauty only because there is ugliness.'"
    4:40 I think it's sad that you couldn't find anything natural for Mary.

  38. Seeing you guys pushing through all these things and carrying on with life makes me feel so much less alone. Thank you for showing the realities of chronic illness and that there are still so many reasons to be grateful and smile xxx

  39. Always find timely reminders in your videos. This time of year is always rough. I miss my late husband more, especially since his birthday was Christmas Eve. But there is so so much to be thankful for, to find joy in even the tiniest of things. Oh, and stickers are my happy place, lol.

  40. Hey Peter and Mary, I’ve been watching you for years and love how your channel has grown so quickly! I wanted to share something with you that has helped me to avoid so much sickness and to help my immune system. I have a hard time eating a lot of fruits and vegetables so I take them in capsule form, the capsules are called Juice Plus. All it is is dehydrated produce so unless Mary can’t have certain foods, I think this would help her after reading all the studies on it. Happy holidays!

  41. Ollie looks extra cute today! I am enjoying an afternoon filled with naps and watching movies. Nap time for here quick I am under the weather. Love your decorated Christmas home! So many presents! Lucky! I didn’t even put a tree up this year. Just no energy.

    I miss your finds at Thrift Stores Mary! Take care you two!

  42. You both are so amazing and give me the push I need to continue on with my health challenges. Daily prayers for you all. Have a Merry Christmas and a Happy New Year! I think it is funny that I am watching this video and I just saw that you guys posted a video for today/December 21st. Lol! What a coincidence! Can't wait to get caught up while doing laundry! Love and hugs to you all from Florida!

  43. “Look at me being a human, this is awesome” lol!! I know the feeling! You are AWESOME Mary!!! And dong the home IV thang-woot woot!!!

  44. I hate the name infectious disease doctor too! Lol it makes you first, feel like you have a disease lol and second that word infectious makes me think of being contagious which just doesn't sound pleasant at all.

  45. Love ya. I have been feeling low because no family or friends close to me right now & more problems. So, I have been crying & whinning to myself. Then watching your video made me think that there's tons of other people that is having alot worse day then me. Plus, I got my puppy in July & have my other two furkids. They make me SMILE everyday!! THANKS!

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