A ROUGH DAY.
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- Опубліковано 19 жов 2024
- Vlog 7.19.19 - It was a rough one...
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A common phrase in our house these days...
I need an "all aboard the struggle bus!" Shirt.
It's been a rough day!
@@kaylabarnes yes...me too
Praying for you guys! I'm on the struggle bus as well xx
me too
I'm watching this about a year later and I wish we could go back in time and tell you that a year from now you'd be doing so much better.
Oh Mary, the trials you go through and still smiling. Bless you! You are so inspirational. I thank God for you and Peter. I continue to pray for you both. Thankful your blood counts were stable. Know you are loved.💕☺
Michelle thank you for your continued prayers!
Sorry you’re having a rough day. I loved hearing you sing “I ain’t got no needle in my chest, in my chest” again. I love that you still have such a cheery outlook and sense of humor, even when you’re having a rough day. You and Peter are very inspirational. Praying for you every day.
Yay for your blood counts being up. I hope tomorrow is a better day. 🙌💕
So great to hear about your blood counts being better!! Thanks for letting us come along for your journey. 😀😀
Hope your feeling better Mary I really hate to see you struggling and in pain
sending hugs 💜💜
Thanks Lollipop!
I feel you. I have a cold which is much more complicated with chronic illnesses and the last couple of days have been hard but y’all have been keeping me company 😊
Get well now!
I hope you start feeling better too soon prayers going out for you as well 🙏
I so admire your ability to talk through and be present in sharing your pain and the reality of this with others. Honestly, I'd be curled up in a ball with my face to the wall. So appreciate you and I'm praying you feel better.
I'm so sorry you're on the "struggle bus" today Mary. :-( God bless you, and I'm sending my prayers to feel better and stronger soon. Sending my love and hugs to the three of you, see you tomorrow!
Always remember God has you, you have unbelievable support and a ❤️fantastic husband, and so many friends that love you so much💖💖💖
🇧🇷
Mary, I'm Brazilian and I do not understand much of English, but a few weeks ago I'm watching the channel videos and trying to understand a little more about you, especially about you. I do not have cystic fibrosis, but your smile, your disposition, your strength and the beautiful love between you and Peter have attracted me! I've been praying for you and I've learned to be stronger even though I do not understand half of what you say! Oh, I'm in love with Oliver! You are wonderful...❤️
I love that you look for God’s goodness despite the hazards that come your way. Watching today’s video was such a blessing for me. I am making lemonade out of the lemons that were recently thrown my way. Bless you, Peter and Ollie!
I'm sorry you are having a rough time, Mary! I hope you feel better♡ I hope church was good today as well. Thoughts and prayers always 🙏
Thank you LivePrayLove84!
Feelings are such tricky things. Circumstances put our feelings on a roller coaster we don't want to be on. The thing I see coming through you is JOY🙂💜
I'm so happy that you're blood work came back okay. Love you guys ♥️
Can you show a video of the ongoing training Oliver must do to assist you in your day to day living?
Sorry ur on the struggle bus praying that you have better days to come love you 💪❤️
Glad to hear the blood counts are stable. God bless you and I hope the coughing calms down.
I am glad your counts are up, but it sucks you are feeling sick. Hope you feel better quickly. Hugs and prayers.
I'm so sorry you had a rough day. Always praying for you. I'm glad you had a fun week of planning. Mary, your smile is so beautiful! XO
Your amazing Mary so positive even when its a rough day. Glad the numbers were better and i hope you get to share in the service on Sunday. Love and hugs to you all from NZ
Lots of hugs and prayers 🙏❤️
Hope you're feeling tomorrow!!! Thanks for showing your succulent plants! I'm into them now. Already new baby succulent s are beautiful!! I'm hooked!!! Praying for you both.
So glad the numbers are up now if your little body would give you some rest!! Your so determined luv and prayers always👍😁
If and when you have a successful transplant, do you imagine how different your days will be. I mean your entire routine revolves around keeping you as healthy as possible. I know there will still be a lot of medical maintenance, but WOW what a difference it will be for you and your family.
you're so brave, Mary. i'm truly sorry you are having such a rough day. may the LORD comfort your body and your heart. much love to all of you.
Prayers for you Mary...your struggles are pure and real and you inspire!
I’m so sorry that you had such a tough Friday, cariad. I hope and pray that your weekend was better xxxxxxxxxx
I’m so happy that your blood counts are stable praise God thank goodness I was a little worried there when you got your blood work done and all that stuff from your kidneys were going to be happy but praise God
Praying for You Mary U love the way You handle life. Glad Your blood counts are up
Hang in there Mary! Hugs&Prayers!
I'm so sorry you are not feeling too good.. Sending love and prayers to you Mary! ❤️ Take care 🙏
IV saline does seem to work so much better than drinking by mouth for some things. Maybe it's absorption? Instead of having to go through the GI system to then get pulled into the bloodstream, it just goes straight into your blood.
Sending you both extra prayers and hugs today!!!!!!
Your such a trooper! I hope the blood counts stay good.
Thank God for blood count stability!!! I prayed that they would be stable!!! Hang in there Mary! It’s horrible to see you struggle & in pain, but we know that u got this!! I’m so sorry today has been so rough & tough...we are cheering SO hard for you!!!
It's great to find the good in a hard day. I'm so glad your blood work is stable. 😀👋
Sleepy poodle feet! Awwww! Mary, hope you are feeling better today and could go to church. :) No matter what, you are "strong, brave and bold." (remember that?) You are definitely from good atock!!
Thank you Evie!!
I hope you get to feeling better Mary and your blood counts are evening out. Blessings to you, Peter and Ollie.
So sorry honey hope you feel better, as better as you can feel that is. 🙏🙏🙏 Bless you both.
Thinking of you often, Mary. Praying you will feel better soon. ❤️
Take care Mary. Hard to see you having them rough days you have them though. I will send prayers your extra pain goes away...
6:33 Laughed out LOUD at that “Sorrayyy”. 😬🤣🤣🤣🤣
I would just like to let you know that the first shot in your intro song, (at least in my opinion) looks just so cool, it's just a powerful shot!
I live in Atlanta and this heat is difficult for me. I can’t begin to imagine what it might be doing to you. I hope you find balance. Lots of love and prayers.
God bless you - you both give me hope and I know I’m not alone in the struggle.
You are an inspiration to so many people.
Burrrrr it's cold in the fridge! 🥶 Praying for strength. 🙂🙏🙋
Ok new vlog position for filming from the fridge! Hilarious 😂 but I love it at the same time, the fan in the background so calming but whoa that tip my life flashed before my eyes🤣🤣❤️ Keep on trucking through those rough days Mary you can do it and with Peter, Ollie and the Big Guy watching out for you I pray for a better day tomorrow!!
Warm cuddly hugs and prayers for you both.
I'm glad that your bloodwork looks a little better. I hope that you get some good rest and feel better.
Mary, I puff up too on 0.9% saline too. Hospital was able to get lower concentration saline for me when I mentioned the edema. May be an option for you too?
Mary youre amazing God has you be strong emotionally as he does for me being chronically sick I am moving to down South God wills
also you have so much HAPPENING! Moving, which is very very stressful....and it's so HOT....and everything else. Almost all my friends with an illness are feeling this heat...
Mary, Mary, so not contrary! I'm sorry, that just came to my mind and I had to write it. You are the most inspirational person, always looking for the positive even when you have every reason to be negative. I can be so impatient when I don't feel good and I am generally very healthy - you make me feel ashamed of myself. God bless you, hope you have had better days since this one.
Seems with chronic illness, we can do everything right and not feel the return...but if we wait long enough their are mountain tops and plateaus still ahead. Its a real mind game and a faith walk sometimes. Try to keep in mind all the past victories and suprises. Praying soon you will get some of that lovely reprive. Until then rest in Gods comforting strong wing. Have you ever seen the inside space u der a momma gooses wing. You must find a place that will show you. Its the most esquisite thing. In his hand and under his wing is where i find rest when the road is too hard at times. Your such a great partner and wife. Such a thoughtful and mature couple and so greateful for your contribution to helping others through sharing.
Hey Mary Praying for you as you go through the IVs, trips for blood work and all the things. Yea, I say that a lot too! 😂 Here's a tip for a quick relief to nausea that an ER nurse taught me...put an ice pack on the back of your neck. Works like a charm! I just had to do this yesterday myself. Then I took some Zofran.
Thank you, we will try that!
I get complicated UTI's (like this weekend) and get sick really fast so I need to have Zofran on hand just to get me to the doctor.
WHALLLLE DRESS!!! I love that dress. You still have it yayyy
Lots of Prayers 🙏 your way Mary ,God bless you all 🙏✝ Hugs 💕Margaret from Florida 🌴 🌴
Let The Sunshine In ... Hi Mary& Peter And Oliver
Sorry you are having a rough day! Sending love and healing vibes! 💕 ✌️ 💐
I've always watch all your videos and Its hard seeing you going through so much! I pray you have better days 🙏 ,your miracle is coming ❤️
Is your transplant team aware of all these troubles lately? Keep them informed, they may need to recheck your options.
You should try some compression stockings for the puffy legs. They may help.
Fist bump from Lady the cat to make the rough day seem a little better. Hope you guys can get some well deserved rest.
So glad your numbers were GOOD! Even though you feel so bad.
Good luck moving to your new house in North Carolina Mary and Peter
All the tiny or little wins always lead to big wins.
Sorry you are having a sucky day. I've noticed that if my fever is over 100, even if it's just 100.4 I feel a lot worse than when it stays below 100. I run a low grade fever usually between 99 and 100. I think it's caused by medicine I take. I'm on immunotherapy because I have cancer but I have noticed I'm really not good when my fever goes past 100. Feel better soon.
I'm sorry you are struggling Mary. I hope you feel better soon.🌻⚘😿
I hope u get better tomorrow,but above all thank God for everything ,i pray for u at church today and ur family
You are so me mary in the beginning 🙄 gastro problems SUCK
"good morning"
Me: 0:40
"how was lunch?"
Me: 0:40
"Wanna go swimming?"
Me: 0:40
"......."
Me: 0:40
Mary hope that you feel better soon and praying for you and love y'all so much and I don't like how you are in so much pain and struggling and I love Oliver boy too
How often do you need to get bloodwork? I love your channel and it’s really informative. You’re so strong and one of my idols! Love you! ❤️
Megan is a gamer, thank you 😊
I think it every second day, Monday, Wednesday and Friday 😊
Send you hugs ♡ i look your videos every day or for me every evening. (Germany) i hope you'll feel better soon.
That’s the way it is with adrenal insufficiency one minute good the next it feels like you’re dying
Rough days can be so depressing. I try to do something to spoil myself on those rough days and I tend to go back to bed. It’s hard with three needy kiddos to care for, though. I don’t have a partner anymore so when I am struggling I have to appeal to the kiddos to be cooperative and to help out. I don’t have CF though, I am only crippled up with arthritis and heart disease. It’s much harder for you and I really can’t imagine how hard it is to cope with lung problems.
Hi Mary, have you tried putting lemon or salt in your drinking water? Always talk to your doctor of course as you know, but my doctor said that the lemon or salt helps your body absorb the water better into your system; Also congrats on your blood counts being stable and I hope the pleurisy lung pain stops soon as well!
Mary, Peter & Ollie, just a quick note here. I love you all!! I'm heading for bed now...been kind of rough here too with the heat and other things. I love you!!!!! Good night honey. Will talk soon. Take care.
Jessie
As long as we're together we can do anything❤
Hi Guys , I am glad your blood counts have stabilized Mary , say 'Hi' to Peter for me . It is HOT ++ , I hope all is well today stay strong and keep cool , and rest like Ollie !! Thanks for the update , take care , Gary
Hugs. Love you guys!
Sending many prayers
I hope you start feeling better soon prayers for the both of you and for your move ❤🙏
Thank you Beverly!
Prayers
When the zofran doesn't help😣always rooting for you Mary!
(ETA, I was trying to figure out why I know what neupogen was, and then I remembered I am getting that for when my Be the Match person is ready for my stem cells! Make some good helpful marrow and feel better soon girl.)
My prayers are with Mary always Hi Peter and Ollie god bless you all 🙏🙏❤❤❤
When you have Tapatio in your fridge you know you have a good taste in food.
Have you tried Liquid IV? You take the powder and mix it with a bottle of water. It's got all of the benefits of drinking 3 bottles of water but you only drink 1. Look into it, my son drinks it every day. He has to drink at least 160 oz a day.
Hail from brazil hope you get better soon love u guys
If you get toooo puffy, have a few bites of asparagus-totally a natural diuretic. But don’t eat too much! 😀
Mary can I ask why you store your fluid bags in the fridge? I keep seeing chronically ill people doing this, yet I’m currently getting fluids at hospital 3x a week and will be coming home and they said fluids don’t need to be in the fridge and it gets hot in Australia so plz if anyone knows enlighten me
Depends on the type of fluids, I assume. My child has a different chronic condition and some medication needs to be cooled, some not: even if it's the same main ingredient.
Depending on how the bags were prepared, they may need to be refrigerated. I have saline that does and doesn't need to be put in the fridge, it all depends on how that certain bag was produced.
Sometimes I get the feeling that you are caught in a vortex of trying to have 'interesting' things to vlog about each day with an ever-increasing pressure to vlog every day and, at the same time, also tend to get into an obsessive spiral focusing on nausea/puking/blood counts and every ache or pain, which then makes it all even larger and takes over your life/vlog. The amount of focus and detail into each episode of pain or the sharing of how much you puked, what it was like, how many linen items got soiled, etc. has increased over the months. That's *not* to diminish the real and daily struggle that obviously occurs in fighting CF and trying to stay healthy, but it's just something I've been noticing in the vlogs that over time have become apparent. When I watch and listen, my sense is there has to be new or more effective ways of coping or processing that will enable you to have a respite from the spiraling or obsessive thoughts. Whether that's some type of therapy, exercise, meditation or something else, it might be something to consider. Please know I am *not* criticizing you at all, I am sharing what I'm seeing and I bet others have noticed this as well.
I'm sure the hot, humid weather you're dealing with in your part of the country isn't helping your health.
Mary have been praying today for you and Peter. I know how had illness can be I do not have CF so no cough but pain in all joints. I some times find I ask the Lord why me not sure I should but He never gives me more than you can handle. Big hugs and prayers xx
Hail Mary I have a question for you from artist to another what kind of art supplies watercolors diesel use??
Mary introduces her colours, pens and paper in a video. Here's the link:
ua-cam.com/video/krT-HAIX8DU/v-deo.html
Kind regards!
❤️
Love you cyster!
Mary,stay positive.sending you guys love and prayers. love you guys. night. veronica