When Mary mentioned that Peter mowed the grass, I had a lightbulb moment. Last year your videos were full of grass updates. We watched its progress closely. This year, we’ve changed and now we watch Eli change and grow. As a community, we’ve all changed priorities. Little Eli has touched so many hearts! ❤
Ugh medical stuff! I had a horrible reaction after an IVIG 2 months ago. Horrid headache sick and exhausted. The dr wanted me to change to subquetaneous (sp?) so like every week instead of every month. Insurance rejected it BUT when I told the nurses at the hospital infusion center they gave me a small amount of fluids before and after the infusion. WHAT A DIFFERENCE!!! Also I get breakfast or lunch depending when I’m there!
All these years that I follow you in the vloggs; I always notice that despite being sick you always focus on little things that make you grateful. You never really complain, although there are of course sometimes concerns. Also many people can learn from you to keep hope for the future and new resources. And you, like me, have your faith in God Who stands by us in the midst of everything. Stay blessed grtz from the Netherlands.
Medical maintenance to keep you going just amazes me how you do it. Eli is lucky to have a mom that continues to fight and shows what life can be during the ups and downs while having joy in the midst.
I love the story about Mr. Joel! My husband is a retired school librarian but still works as a public librarian. He has been a librarian for 41 years. The kids call him Mr. Dean and I am Mrs. Dean. I wish that I could send you a picture of him doing the Hula at a Hawaiian themed summer reading program! I am a retired teacher too and I help out with summer reading. So happy that you take Elijah to the library!! Older librarians rock! You just made my day!! Shout out to Mr. Joel! Respect!!
Hilarious run in with Olie America's Funniest Home Video's there you go. Happy story time Elijah and medical trials and tribulations. Thanks for sharing your day God bless.
Mary, I really feel for you with the low-blood sugar situation, because I've experienced it myself far too often. During most of the lows I was alone, and I literally felt like I was going to die if I didn't get my sugar level up. Symptoms were extreme weakness, shaking, nausea, brain fog, heart palpations...just awful!! People who have never experienced it can be so casual and flippant about it, because they have no idea how serious it is. They wouldn't believe how scary and physically dangerous this is. You are strong and amazing Mary. God bless you and your family.💕
Soooo agree that insurances & medical "stuff" can be so frustrating at times. LOVED how you said, "You have a coke and move on." What a sweet reminder to just to take a breath.💙
It’s seems the doctors and nurses don’t yet understand CF related diabetes either. We can’t seem to get our daughter’s blood sugar down to a more acceptable count. They just freaked out when it was so high.
Mr Joel sounds like Miss Barbara's Storytime in my town! She's got the voices and enthusiasm that captivates all the littles. I got to take my grandson until he reached school age & I miss it!❤️ Your little guy is SO adorable and the perfect age for Storytime💙
Hearing the Coke story....made me remember something I learned right after we moved to the South 17years ago. According to everyone we met... Every soda is called Coke!!! So if you actually want COKE you need to be very specific in how you ask😊
Such a timely vlog! Thank you, so so much! Had some very stressful medical calls to make, and battling a lot of mental health stuff. Even though I had already got some things done, this just felt like the perfect check to just keep taking that next step forward. Every day is a gift. Thank you for helping me to appreciate my days, even today. Praying for you, Peter & Mary!
My infusion center gives you a menu and you get a full meal. My favorite is their cherry cheesecake. I have my infusion today. So I'll probably have sweet tea with broiled fish and a loaded baked potatoe. I usually come home and sleep for hours.
Mary, I have a similar conflict. I just found a Vietnamese restaurant in the town where my medical team/clinic is (Greenville, NC). The caveat is they are not open on Mondays! So no more Monday appointments for me. LOL It’s totally a first world problem. I like the switch. Peter’s day, Mary’s day, two separate tapings duped together with you both together at the end. Love how you’re always able to still keep it interesting with the edits and content.
Quick tip. Mute the calls that require you to speak until you are ready to select. It just occurred to me one day when my kids kept activating it during a call.
Love you guys, Can’t miss your guys Journey, might not watch right away, but I watch you guys when I have line time. My hubby had a bad stroke, bleeding of the brain, and I refuse to send him to a nursing home and he is bed ridden. God Bless You Guys
So glad that you find time to take Eli to the library! I was one of those strange kids who preferred spending my summer at the library doing the summer reading programs that they had and I've always loved the library! The smell of the library is always the same.. pleasant to me! It has been several years since I've been.. unfortunately I've become disabled and can't stand for long periods to be able to peruse the shelves like I used to. Story-time with Mr. Joel sounds lovely... I am all for developing a love of reading at an early age! Wishing your family the best upcoming holiday season! How fun Christmas is when you have a little one to share it with!
I know this is a month behind, but my daughter gets IVIG tomorrow and the next day. It will be her first time getting the higher dose. Praying that it helps her!!
Overwhelming medical stuff was yesterday for me. I was trying to do my Ajovy injection and it somehow malfunctioned and the needle didn’t go in and instead it shot the medication all over me, running down my leg, splattering on the floor. Ugh it was a mess. That also freaked me out. I called the pharmacy and thankfully the really nice lady answered, who knows me by name, well so does the pharmacist and most of the other people, but I was so glad she answered. She was like it’s ok, this can happen, just find the phone number on the box and call the company, which the phone number was not on the box or in the paperwork. I found it on google finally, it was over an hour on the phone, part of the time with a person I couldn’t understand hardly at all. After all that they were like in 7-14 business days the pharmacy will receive the replacement. I’m like, umm I can’t wait that long, i was already 2 days late doing it and then to be told I’d be another week to 2 weeks later. I called the pharmacy again and they are like umm no you can’t wait that long let us order one and then we will just keep the one they send us. They think that they were able to order it in to get there today so I’m waiting til noon to call and see if they have received the meds for the day and if the Ajovy made it. Im also waiting on Fedex to come to pick up the one that malfunctioned to return it to the company, and I have no idea when they will come was told between 9am and 5pm. But I also have to go hopefully to the pharmacy and that’s a 30 mile drive each way. It’s super cold here so I hate to put it outside idk maybe I will put it in an insulated lunch box inside the screen door and leave a note for the fedex person if I have to leave? My head is not appreciating me being late on this med.
I completely understand your frustration I work for a health insurance and things can be complicated and frustrating. Hang in there I hope they figured everything out.
I found your videos from researching 2 things. Service dogs and diabetic alert dog. Well I do now have a fully trained service alert dog. But I also got introduced to Dexcom. I had one for about 2 years for type 2 diabetes due to other medical issues. Then my lovely insurance stopped covering it because they only cover it for type one diabetes. Ugh insurance. I really miss having Dexcom. It’s so helpful to keep track of what your sugar levels are. Hopefully you still get it.
I am just so grateful to live in Australia where I don’t need to worry about health insurance issues, like you do. I have chronic illnesses but it’s so simple to manage over here. Medicare covers everything for me as I am on a disability pension. I do have some private insurance as I prefer to go to a private hospital for treatment and surgeries. I get so much medication that I end up getting it for free for at least five months of each year through our safety net scheme. I don’t pay for Doctor or specialist visits and I had a recent surgery and was in hospital for a few days but I didn’t even get a bill. I would hate to have to struggle with all the medical insurance issues like you.
I know Aussies like to brag sometimes, about what they have that isn't available in the US, but I'm here to say: it's not all peaches & cream in Australia. I am married to an Aussie. As we have learned, with medical care in Australia, there are ups and downs to their healthcare system as well. Good drs. are scarce in Australia; not many experienced drs. want to work in Australia, so good drs. are in short supply in Australia. And as you mentioned, and I concur; it's what kind of health coverage you have; private health cover is better and a of people in Australia can't afford private health coverage. The "extra" medication is a plus, but there are minuses in the system. My mum-in-law had open-heart surgery (the same kind of open-heart surgery that my own father had in the states); my MIL wasn't told, or given a medication beforehand that would protect her major organs from failing (or becoming weakened); from the surgery; she wasn't even told about it; whereas my father, in the US, was given this drug to protect his kidneys, his liver, etc. and he had no issues w/those organs after the surgery. My MIL did and she forever after had weakened kidneys! Just because she wasn't informed in Australia that she should be started on a drug to protect her organs Before her open-heart surgery. She now has to watch her fluid intake and that is hard to do living in such a hot climate. So, she might have had a lesser hospital bill, but at what cost? I have an Aussie mate who has horrible gallbladder pain and has been put on a waiting list for up to 6 months or longer to have her gallbladder removed, whereas in the US it would be done ASAP! It's the same with the NHS health care system in the UK; excessive waiting lists. My husband needs sinus surgery, and he is on a waiting list; maybe he will be able to have it done within a year; maybe not, and he suffers with migraines while waiting! And yes, we have private health cover. I could go on & on, about a mate that has had to have Two brain surgeries (because the 1st one didn't work) and the old-fashioned surgeries still being done instead of the more advanced laparoscopic surgeries, but I digress. Both country's medical system has plenty of pros and cons & I'll just leave it at that.
No health system is perfect. Plenty of people with chronic conditions (myself included) are not eligible for DSP or even a health care card through Centrelink. Meaning despite Medicare and private insurance we are still left paying thousands of dollars out of pocket just to stay alive. I am glad that you are having such a good experience financially with managing your health, Cheryle.
I can’t agree that we don’t have excellent doctors in Australia. I think in all systems there will be a few exceptions where people fall through the cracks. I know hundreds of people who have had excellent and immediate care here, myself and my family included. I would say they majority of people here do have a more positive experience. My comment was really aimed at the stress of dealing with the health insurance companies in the USA. Mary must go to a certain clinic to get her iv/it infusion. She can’t access certain drugs because her health insurance won’t cover them. We don’t ever have those problems here. You get what the doctor orders for you and your usually able to choose which clinic you want to attend. It’s much easier.
@@cherylemaybury9967 I’m not denying that plenty of people (yourself obviously included) get amazing care. I myself am a health care professional. But I disagree with your comment that we “don’t ever have those problems here”. I personally have had extensive issues accessing the care I require, and these issues have been ongoing over a period of years. Whether I go through the public or the private system. People who aren’t in a privileged position to be able to afford private insurance have reported even worse experiences. In my HCP role I see people fall through the cracks in our system every day. Like I said in my original comment - no health system is perfect.
Insurance can be such a pain. Do high sugar foods tend to give you maybe a high number for a while and then drop. Kind of like kids on a candy high? Hi Elijah and Peter. 😁😁👋👋💖💖
Hi! It is bad enough that you have to deal with serious medical issues, but it must be so exhausting having to deal with the insurance and administrative incompetence stuff all the time! I can relate a little to your IVIG and insurance chaos now! I will be having my first 5 days of IVIG infusions in two weeks. The nearest infusion center is an hour away and I can't drive that far due to my muscle disease affecting my arms and shoulders. (I don't have family nearby and a friend who could normally drive me just broke her leg, so...!). They managed to get me authorized to get IVIG at home, but the co-pay for the first week was going to be over $4,900.00. They referred me to a financial aid source but that one had a max of $2,000.00/year (but I will need two days of IVIG every month, so not much help.) After I explained the problem, they looked into it further and found another aid source that will cover 100% of the cost. Yay! Of course, this all took several weeks and a lot of energy, delaying my treatment. The next challenge will be figuring out how to get to the other medical center (45 minutes away) where I will have to go to do specialized PFTs, but I have a month to figure that out. P.S. It has been wonderful following your story over the years and it was such a joy to see the change that Trikafta has made in your lives and your joy at being able to welcome Elijah into your family. (I have been following your story since I became disabled in 2016 and discovered you through your Dollar Tree hack video). I never thought IVIG and PFTs would be part of my story!
I ❤seeing you both using ASL with Elijah! I’ve been following ur channel forever😊 and am Deaf. I remember you mentioning learning ASL due to your loss. If ya ever need Zoom lessons for free let me know(Can provide more “me” details)! Seriously, consider it a blessing💜!
I totally understand about Medical calls and paperwork. Yes, I have shed some tears and have to take my anxiety meds and go to bed even if it’s the middle of the day. I’m on so much medication and all the side effects are horrible. I do better with the pain than all the nausea 🤢& dizziness 😵💫. Zofran and Meclazine help a bit but then I’m not able to eat. I often wonder how much pain, meds, procedures, & anxiety & depression can one take before giving up? I have just received new results from from a bundle of tests that warranted more tests and guess what? I’m the lucky winner of more problems and diseases. I’m already disabled & and in Palliative Care, what’s left? I was told, Hospice😮
It’s so frustrating when medical stuff does not go your way. It’s so hard for a lot of meds to go through etc. for me I am grateful we have coverage for my meds cause they would be over 2000 dollars a month if we did not. Also a lot of people say Canadian medical is great but for surgeries it’s really not.
Oh Peter and Ollie. Ouch! Life of a vlogger, always have evidence. Missing Mr. Joel, bummer. Insurance can be so annoying. I’m glad they were nice. Oh, Elijah, you tried.
I am interested in your medical insurance situation. I'm retired and on Medicare so medical insurance is not an issue for me. How do you deal wirh medical insurance issues that can be such a pain for those of us, but given the serious nature of your medical issues and costs....how do you do it?
Mary: I like it better when you can just push the number (on the phone). Me: I like it better when 30 years ago they simply had a person answer the phone the moment we called. Mary was right in that other video. You prefer "Coca cola," but Shasta cola isn't so bad. Good brand. "And then you drink a Coke and move on." I used to feel that way. In high school and college, around that time of life, whenever I was stressed I would drink Coca Cola. While I still like Coca Cola, I stopped doing that at said moment because I realized the stressful problem remains even after the Coke. Deal with the situation, then drink Coke. If said situation won't be dealt with no matter how much you deal with it, no amount of Coca Cola is gonna fix the problem. So now, I just drink it whenever, whatever the case.
I spent most of the day chasing medical information and scheduling appointments for my husband, all while dealing with my own chronic illnesses and disabilities. I didn’t know Coca-cola was the antidote for the stress and anxiety. 😂 Now, if only I could drink it! Sadly, caffeine and sugar are both enemies of my body 😢
I hate medical calls and then my husband tries to fix it and he can't because "we don't check off their boxes" ... MARY any advice? PETER and advice for my husband?
Why don't you mask at medical offices? I know you're not being careful but others are. Please stop. If you're eating/drinking that's one thing but to vlog maskless in Healthcare settings is wrong. I'm really disappointed.
When Mary mentioned that Peter mowed the grass, I had a lightbulb moment. Last year your videos were full of grass updates. We watched its progress closely. This year, we’ve changed and now we watch Eli change and grow. As a community, we’ve all changed priorities. Little Eli has touched so many hearts! ❤
I wonder what next year will be!
Ugh medical stuff! I had a horrible reaction after an IVIG 2 months ago. Horrid headache sick and exhausted. The dr wanted me to change to subquetaneous (sp?) so like every week instead of every month. Insurance rejected it BUT when I told the nurses at the hospital infusion center they gave me a small amount of fluids before and after the infusion. WHAT A DIFFERENCE!!!
Also I get breakfast or lunch depending when I’m there!
All these years that I follow you in the vloggs; I always notice that despite being sick you always focus on little things that make you grateful. You never really complain, although there are of course sometimes concerns. Also many people can learn from you to keep hope for the future and new resources. And you, like me, have your faith in God Who stands by us in the midst of everything.
Stay blessed grtz from the Netherlands.
Medical maintenance to keep you going just amazes me how you do it. Eli is lucky to have a mom that continues to fight and shows what life can be during the ups and downs while having joy in the midst.
He is growing fast!
I love the story about Mr. Joel! My husband is a retired school librarian but still works as a public librarian. He has been a librarian for 41 years. The kids call him Mr. Dean and I am Mrs. Dean. I wish that I could send you a picture of him doing the Hula at a Hawaiian themed summer reading program! I am a retired teacher too and I help out with summer reading. So happy that you take Elijah to the library!! Older librarians rock! You just made my day!! Shout out to Mr. Joel! Respect!!
I’ve been nursing a poorly husband all day, so joining in with life in Durham was a nice escape! Thank you guys! xxxxxxx
❤
Please take care of yourself Mary. You have a beautiful baby that needs you as does your husband. Make sure you get your rest. ❤️💗
Stay strong god bless🙏🏾✝️
Hilarious run in with Olie America's Funniest Home Video's there you go. Happy story time Elijah and medical trials and tribulations. Thanks for sharing your day God bless.
Oh my gosh, Peter & Ollie took a good blow to the noggin. 😅❤ love seeing Elijah sitting at the table
Mary, I really feel for you with the low-blood sugar situation, because I've experienced it myself far too often. During most of the lows I was alone, and I literally felt like I was going to die if I didn't get my sugar level up. Symptoms were extreme weakness, shaking, nausea, brain fog, heart palpations...just awful!! People who have never experienced it can be so casual and flippant about it, because they have no idea how serious it is. They wouldn't believe how scary and physically dangerous this is. You are strong and amazing Mary. God bless you and your family.💕
Soooo agree that insurances & medical "stuff" can be so frustrating at times. LOVED how you said, "You have a coke and move on." What a sweet reminder to just to take a breath.💙
I'm rewatching peter and ollie's collision haha
It’s seems the doctors and nurses don’t yet understand CF related diabetes either. We can’t seem to get our daughter’s blood sugar down to a more acceptable count. They just freaked out when it was so high.
Mr Joel sounds like Miss Barbara's Storytime in my town! She's got the voices and enthusiasm that captivates all the littles. I got to take my grandson until he reached school age & I miss it!❤️ Your little guy is SO adorable and the perfect age for Storytime💙
Hearing the Coke story....made me remember something I learned right after we moved to the South 17years ago.
According to everyone we met...
Every soda is called Coke!!!
So if you actually want COKE you need to be very specific in how you ask😊
Oh dang! You could hear the collision between Ollie and Peter's heads!
Yeowch, that was a head butt. Hugs to you all.
0:27 I don't see anything, but I'm glad to hear it's not serious.
Such a timely vlog! Thank you, so so much! Had some very stressful medical calls to make, and battling a lot of mental health stuff. Even though I had already got some things done, this just felt like the perfect check to just keep taking that next step forward. Every day is a gift. Thank you for helping me to appreciate my days, even today. Praying for you, Peter & Mary!
My infusion center gives you a menu and you get a full meal. My favorite is their cherry cheesecake. I have my infusion today. So I'll probably have sweet tea with broiled fish and a loaded baked potatoe. I usually come home and sleep for hours.
Mary, I have a similar conflict. I just found a Vietnamese restaurant in the town where my medical team/clinic is (Greenville, NC). The caveat is they are not open on Mondays! So no more Monday appointments for me. LOL It’s totally a first world problem.
I like the switch. Peter’s day, Mary’s day, two separate tapings duped together with you both together at the end. Love how you’re always able to still keep it interesting with the edits and content.
Quick tip. Mute the calls that require you to speak until you are ready to select. It just occurred to me one day when my kids kept activating it during a call.
I am IN the medical field and I have the SAME problems getting things ordered for myself.
Bless your beautiful heart Mary 🙏🏻🙏🏻
I am with you Mary. I am recovering from a low blood sugar currently. It is difficult to have chronic low blood sugars.
He is getting so big ❤
Love you guys, Can’t miss your guys Journey, might not watch right away, but I watch you guys when I have line time. My hubby had a bad stroke, bleeding of the brain, and I refuse to send him to a nursing home and he is bed ridden.
God Bless You Guys
Ollie wanted to play 🥰
Who else can't get over Eli's little curl on top?
So glad that you find time to take Eli to the library! I was one of those strange kids who preferred spending my summer at the library doing the summer reading programs that they had and I've always loved the library! The smell of the library is always the same.. pleasant to me! It has been several years since I've been.. unfortunately I've become disabled and can't stand for long periods to be able to peruse the shelves like I used to. Story-time with Mr. Joel sounds lovely... I am all for developing a love of reading at an early age! Wishing your family the best upcoming holiday season! How fun Christmas is when you have a little one to share it with!
I know this is a month behind, but my daughter gets IVIG tomorrow and the next day. It will be her first time getting the higher dose. Praying that it helps her!!
Overwhelming medical stuff was yesterday for me. I was trying to do my Ajovy injection and it somehow malfunctioned and the needle didn’t go in and instead it shot the medication all over me, running down my leg, splattering on the floor. Ugh it was a mess. That also freaked me out. I called the pharmacy and thankfully the really nice lady answered, who knows me by name, well so does the pharmacist and most of the other people, but I was so glad she answered. She was like it’s ok, this can happen, just find the phone number on the box and call the company, which the phone number was not on the box or in the paperwork. I found it on google finally, it was over an hour on the phone, part of the time with a person I couldn’t understand hardly at all. After all that they were like in 7-14 business days the pharmacy will receive the replacement. I’m like, umm I can’t wait that long, i was already 2 days late doing it and then to be told I’d be another week to 2 weeks later. I called the pharmacy again and they are like umm no you can’t wait that long let us order one and then we will just keep the one they send us. They think that they were able to order it in to get there today so I’m waiting til noon to call and see if they have received the meds for the day and if the Ajovy made it. Im also waiting on Fedex to come to pick up the one that malfunctioned to return it to the company, and I have no idea when they will come was told between 9am and 5pm. But I also have to go hopefully to the pharmacy and that’s a 30 mile drive each way. It’s super cold here so I hate to put it outside idk maybe I will put it in an insulated lunch box inside the screen door and leave a note for the fedex person if I have to leave? My head is not appreciating me being late on this med.
I have IVIG
,2 back to back infusions once a month. It’s taken a year to begin reducing my symptoms. I’ve had Lupus (SLE) since I was 18 yrs old.
You both are so blessed when Elijah came into your lives. You are all blessed. He is growing up so fast. Love you all💜🙏
That's funny, yes in its part of life thank you for reminding me of that I needed that. Praying 🙏
It would be be fun to have a cooking with Peter section.
I know I cry too
Dog headbonks hurt so bad sometimes. My Golden did that but she head bonked me in the nose. Ouch! Eli is such a cutie!
You guys always bring the precious and the thankfulness to my day. Hope your having a wonderful day today. 💝
I completely understand your frustration I work for a health insurance and things can be complicated and frustrating. Hang in there I hope they figured everything out.
I agree Mary 🙏🏾❤
Medical details, medical illness, medical illnesses frustration. Undiagnosed illnesses the list just goes on. I've been through it all.
Thanks for sharing your adventures with us. I know your chili must have been fabulous. I hope you got my package. Crystal from Michigan.
I found your videos from researching 2 things. Service dogs and diabetic alert dog. Well I do now have a fully trained service alert dog. But I also got introduced to Dexcom. I had one for about 2 years for type 2 diabetes due to other medical issues. Then my lovely insurance stopped covering it because they only cover it for type one diabetes. Ugh insurance. I really miss having Dexcom. It’s so helpful to keep track of what your sugar levels are. Hopefully you still get it.
I am just so grateful to live in Australia where I don’t need to worry about health insurance issues, like you do. I have chronic illnesses but it’s so simple to manage over here. Medicare covers everything for me as I am on a disability pension. I do have some private insurance as I prefer to go to a private hospital for treatment and surgeries. I get so much medication that I end up getting it for free for at least five months of each year through our safety net scheme. I don’t pay for Doctor or specialist visits and I had a recent surgery and was in hospital for a few days but I didn’t even get a bill. I would hate to have to struggle with all the medical insurance issues like you.
I know Aussies like to brag sometimes, about what they have that isn't available in the US, but I'm here to say: it's not all peaches & cream in Australia. I am married to an Aussie. As we have learned, with medical care in Australia, there are ups and downs to their healthcare system as well. Good drs. are scarce in Australia; not many experienced drs. want to work in Australia, so good drs. are in short supply in Australia. And as you mentioned, and I concur; it's what kind of health coverage you have; private health cover is better and a of people in Australia can't afford private health coverage. The "extra" medication is a plus, but there are minuses in the system. My mum-in-law had open-heart surgery (the same kind of open-heart surgery that my own father had in the states); my MIL wasn't told, or given a medication beforehand that would protect her major organs from failing (or becoming weakened); from the surgery; she wasn't even told about it; whereas my father, in the US, was given this drug to protect his kidneys, his liver, etc. and he had no issues w/those organs after the surgery. My MIL did and she forever after had weakened kidneys! Just because she wasn't informed in Australia that she should be started on a drug to protect her organs Before her open-heart surgery. She now has to watch her fluid intake and that is hard to do living in such a hot climate. So, she might have had a lesser hospital bill, but at what cost? I have an Aussie mate who has horrible gallbladder pain and has been put on a waiting list for up to 6 months or longer to have her gallbladder removed, whereas in the US it would be done ASAP! It's the same with the NHS health care system in the UK; excessive waiting lists. My husband needs sinus surgery, and he is on a waiting list; maybe he will be able to have it done within a year; maybe not, and he suffers with migraines while waiting! And yes, we have private health cover. I could go on & on, about a mate that has had to have Two brain surgeries (because the 1st one didn't work) and the old-fashioned surgeries still being done instead of the more advanced laparoscopic surgeries, but I digress. Both country's medical system has plenty of pros and cons & I'll just leave it at that.
No health system is perfect. Plenty of people with chronic conditions (myself included) are not eligible for DSP or even a health care card through Centrelink. Meaning despite Medicare and private insurance we are still left paying thousands of dollars out of pocket just to stay alive. I am glad that you are having such a good experience financially with managing your health, Cheryle.
I can’t agree that we don’t have excellent doctors in Australia. I think in all systems there will be a few exceptions where people fall through the cracks. I know hundreds of people who have had excellent and immediate care here, myself and my family included. I would say they majority of people here do have a more positive experience. My comment was really aimed at the stress of dealing with the health insurance companies in the USA. Mary must go to a certain clinic to get her iv/it infusion. She can’t access certain drugs because her health insurance won’t cover them. We don’t ever have those problems here. You get what the doctor orders for you and your usually able to choose which clinic you want to attend. It’s much easier.
@@cherylemaybury9967 I’m not denying that plenty of people (yourself obviously included) get amazing care. I myself am a health care professional. But I disagree with your comment that we “don’t ever have those problems here”. I personally have had extensive issues accessing the care I require, and these issues have been ongoing over a period of years. Whether I go through the public or the private system. People who aren’t in a privileged position to be able to afford private insurance have reported even worse experiences. In my HCP role I see people fall through the cracks in our system every day. Like I said in my original comment - no health system is perfect.
Hope Peter and Ollie are ok. That headbutt sounded palmful. 😭
Love your sweet family, love your vlogs! 💟💟🙏- Sonia ☺️
Poor Ollie and Peter gkad both are ok
Hi Mary and peter ❤❤
Insurance can be such a pain. Do high sugar foods tend to give you maybe a high number for a while and then drop. Kind of like kids on a candy high? Hi Elijah and Peter. 😁😁👋👋💖💖
Have you thought about getting a Teddy Ruxpin reading bear?
Hi! It is bad enough that you have to deal with serious medical issues, but it must be so exhausting having to deal with the insurance and administrative incompetence stuff all the time! I can relate a little to your IVIG and insurance chaos now! I will be having my first 5 days of IVIG infusions in two weeks. The nearest infusion center is an hour away and I can't drive that far due to my muscle disease affecting my arms and shoulders. (I don't have family nearby and a friend who could normally drive me just broke her leg, so...!). They managed to get me authorized to get IVIG at home, but the co-pay for the first week was going to be over $4,900.00. They referred me to a financial aid source but that one had a max of $2,000.00/year (but I will need two days of IVIG every month, so not much help.) After I explained the problem, they looked into it further and found another aid source that will cover 100% of the cost. Yay! Of course, this all took several weeks and a lot of energy, delaying my treatment.
The next challenge will be figuring out how to get to the other medical center (45 minutes away) where I will have to go to do specialized PFTs, but I have a month to figure that out.
P.S. It has been wonderful following your story over the years and it was such a joy to see the change that Trikafta has made in your lives and your joy at being able to welcome Elijah into your family. (I have been following your story since I became disabled in 2016 and discovered you through your Dollar Tree hack video). I never thought IVIG and PFTs would be part of my story!
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I ❤seeing you both using ASL with Elijah! I’ve been following ur channel forever😊 and am Deaf. I remember you mentioning learning ASL due to your loss. If ya ever need Zoom lessons for free let me know(Can provide more “me” details)! Seriously, consider it a blessing💜!
Did you put your feeding tube back in?
hey mary, I'm sure people tell you this a lot, but omg, you look SO young! I think you're in your 30s, but you can definitely pass as a 16-year old. 😍
What is normal blood sugar in the US? We use much different scale as our norm is 4-7!!!!
45! Oof! That’s a rough one! ❤
I have blood sugar issues due to my dysautonomia and adrenal insufficiency. The boxes are so annoying.
My uncle has a dexcom!
Peter sounds like he's getting a tiny bit of a southern accent, but just a tiny bit. Love y'alls videos Peter & Mary and wittle Elijah 💜
I’ve noticed that too!😄
I totally understand about Medical calls and paperwork. Yes, I have shed some tears and have to take my anxiety meds and go to bed even if it’s the middle of the day. I’m on so much medication and all the side effects are horrible. I do better with the pain than all the nausea 🤢& dizziness 😵💫. Zofran and Meclazine help a bit but then I’m not able to eat. I often wonder how much pain, meds, procedures, & anxiety & depression can one take before giving up? I have just received new results from from a bundle of tests that warranted more tests and guess what? I’m the lucky winner of more problems and diseases. I’m already disabled & and in Palliative Care, what’s left? I was told, Hospice😮
I'm so sorry to hear of your medical issues. Prayers going up for you to find comfort & peace with your medical issues. x
It’s so frustrating when medical stuff does not go your way. It’s so hard for a lot of meds to go through etc. for me I am grateful we have coverage for my meds cause they would be over 2000 dollars a month if we did not. Also a lot of people say Canadian medical is great but for surgeries it’s really not.
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Are you still taking the
IV migraine medicine
i understand now why you wear the Dexcom and I thought you had Type 1 ever since watching your video's
Oh Peter and Ollie. Ouch! Life of a vlogger, always have evidence. Missing Mr. Joel, bummer. Insurance can be so annoying. I’m glad they were nice. Oh, Elijah, you tried.
Oh poor baby. Is Ollie ok? Poor thing. I'm guessing your heads harder then ollie's Peter. 😂
I am interested in your medical insurance situation. I'm retired and on Medicare so medical insurance is not an issue
for me. How do you deal wirh medical insurance issues that can be such a pain for those of us, but given the serious nature of your medical issues and costs....how do you do it?
Mary: I like it better when you can just push the number (on the phone).
Me: I like it better when 30 years ago they simply had a person answer the phone the moment we called.
Mary was right in that other video. You prefer "Coca cola," but Shasta cola isn't so bad. Good brand.
"And then you drink a Coke and move on." I used to feel that way. In high school and college, around that time of life, whenever I was stressed I would drink Coca Cola. While I still like Coca Cola, I stopped doing that at said moment because I realized the stressful problem remains even after the Coke. Deal with the situation, then drink Coke. If said situation won't be dealt with no matter how much you deal with it, no amount of Coca Cola is gonna fix the problem. So now, I just drink it whenever, whatever the case.
I spent most of the day chasing medical information and scheduling appointments for my husband, all while dealing with my own chronic illnesses and disabilities. I didn’t know Coca-cola was the antidote for the stress and anxiety. 😂 Now, if only I could drink it! Sadly, caffeine and sugar are both enemies of my body 😢
Completely understand, Mary, but please make mine a Diet Coke! 😂 Hang in there!
I feel this sentiment so much right now. And every med has side effects. Ugh.
I hate medical calls and then my husband tries to fix it and he can't because "we don't check off their boxes" ... MARY any advice? PETER and advice for my husband?
Does he have croup
Ugh I hate hospitals 🥹🥹
Why are you far behind because it’s November 17
Why don’t you do the song anymore when you deaccess
M son worked at Dexcom.
Why don't you mask at medical offices? I know you're not being careful but others are. Please stop. If you're eating/drinking that's one thing but to vlog maskless in Healthcare settings is wrong. I'm really disappointed.
"Say hello to the people" used to be Ollie's line...🙄
He’d learn to crawl faster if you’d put him down
Dexcom. that my husband used this company