sometimes you lose it and sometimes you cry the tears of frustration and confusion and being scared and that's okay good morning guys hello mayor has been low blood sugar we're gonna go we have packages to drop at the post office we're gonna grab some lunch and see what we get into I've had a really productive day on Church stuff and vlog stuff and all the things so like buzzed on productivity today but here why buzzed on productivity I don't know now it is here we go that moment of panic when I thought I had my ultrason the other purse but I have them in here that clip you just saw was from quite a few hours ago it was when Peter was on a call talking with somebody we've been for the last well actually since before we went to the Duke transplant evaluation before anything we had talked with there we called Duke because we were like okay I think that that's where we're going to be doing the evaluation we need to talk to them about insurance and so we called them before we even had an appointment and asked some insurance questions and then fast forward and those insurance questions were answered and then during our evaluation week on Thursday morning they had us booked with the transplant insurance guy and that was really helpful and we walked through a lot of the questions that we had and then fast-forward again and you know it turns out that we're gonna be moving there prior to transplant so I'll be a pre transplant patient and in that case the insurance looks different because there's a lot of detail so obviously the transplant team laid out what insurance looks like for a post transplant with all of those medications but pre-transplant obviously looks different so all of that to say we've we've been talking with numerous people one of which is through the CF foundation they have some resources people who specialize in cystic fibrosis related insurance questions so we've been waiting for a callback and we've had he's had quite a few calls with them and so today that's what that call was and basically where we're at and I'm just gonna be like sitting here telling you what tonight has been like and it was it's one of those things where you're going along with what you feel like the plan should be like you're like okay that we're just taking the next step and so the next step is figuring out well we've been figuring out insurance this is just another step of figuring it out and I don't know I don't know if I want to call it roadblocks but challenges it's challenging to figure out what makes sense and healthcare is complicated we've been in the health care system here in the US we've been in the healthcare system in the UK when we were there and we've experienced multiple states multiple hospitals health care is complicated and so we you know we're working through a lot of those questions but that being said the the last week has been you know a lot of inspections and stuff at the house and each item happens and then we talk through it we make our decisions and we move on we take the next step or taking the next step and tonight almost felt like a road block like we were trying to take the next step and now there's some pretty significant challenges we feel that God is leading us to take this step to move to North Carolina and part of that is finishing up figuring out all of the insurance stuff and so it was just a huge I mean it's been I don't even know what time it is it was 5:30 it's been like six hours of Peter researching many different different avenues of insurance options so ultimately we know that that god knows these needs that we have and we are trusting that he will give us wisdom to know what steps to take and it's just it's a lot and I'm really really grateful that Peter has a grasp on the insurance world I mean he's self-taught but I think you could now be one of those CF foundation counselors you know the insurance counselor it's just a lot of details and a lot of just different pros and cons to everything right so and a lot of complications with IgG and all those things so but also huge thing is there's this unknown about the new medication I might go on hopefully we'll go on and the mentoring that into the plan and all that and that's like an unknown that you can't actually figure out because we don't there's it's not out yet so it's just anyway so I was like babe I feel like tonight we should be done like you should take a break from all of it and he's like but I don't know how to turn it off like so I think we should watch America's Got Talent sounds good and I mean that's that's what today has been I'm glad that you had like a like you felt good about this morning your morning this morning but yeah well and yeah go ahead I mean it I it does feel like I just worked on stuff for hours and with no conclusions but it I know more now yeah and you know and this is I guess part of we couldn't pick up the camera when this was like particularly happening but you know we're talking through options and I'm like trying to keep a level head I'm trying to like stay logistical about it okay we're talking about options and this and this and and then something in your heart and your brain switches from we're talking about options too like this is terrifying and I feel bad for being so complicated like it's not it's obviously not easy it's not easy to figure out and I'm just really grateful that Peter is willing to take this on I mean he really has taken the insurance decision side of things and I'm really grateful for that like I I will do all of my therapy I will do everything I possibly can to be as healthy as I possibly can and I know that that's not something that you can do for me but the fact that you are willing to do the insurance craziness 14 and I just think like if Peter wasn't like if I didn't have Peter then I would be I mean I'd have to figure it out you'd figure it out and you called the CF foundation you say I need help and you I guess you walk through it but um anyway that was our day thanks for tuning in guys but I think what I was saying was I I lost it I started bawling and I was just it felt like a very big unknown of course because it is a bunch of unknowns but I guess I guess I'm just saying that to be like I know a lot of you guys watch these vlogs and find encouragement in you're not alone in this battle in this journey of whatever you're walking through whatever challenge it is and here we are at the end of the night we picked up the camera and said wow we have a ton of details we're working through and we look happy and chipper we do we do we're able to come to this at the end of night and say we will we will get through this we will work through these challenges but I also want you guys to know that there is that that time another time of the day where sometimes you lose it and sometimes you cry the tears of frustration and confusion and being scared and that's okay too so anyway that's I wanted to finish that thought out before we say goodnight goodnight everybody see them all

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  1. Sometimes you hit what feels like a roadblock- a bump in the road. It’s gonna take work, and maybe some tears, but we can make it over this bump in the road (and if you need a glimmer of hope, even just the next morning, we are feeling more hopeful)

  2. Hugssss sometimes we loose it. Tonight at the hospital whit my daughter who has cf was so awful and I completely lost it and took out my anger on the medical team.

  3. I'm in Italy and I don't have to deal with any insurance, anything for my cancer care is automatically provided and financed by taxes. I think tho that in America there might be more options and maybe second opinions. Hope you manage to get the most of the new insurance!

  4. Oh, goodness! I can't even imagine how stressful insurance is for a multi organ transplant! Especially when there are so many departments and seemingly arbitrary rules/regulations and systems involved. Today for a tiny example of losing my mind with health care: I finally got a referral for a specialist surgeon for one of my joints who could see me sooner than the previous Dr and of course the referral request was for the wrong side! 😳Instead of the right it was for my left and I was only barely able to make an appointment because it was far out enough that the changes could be made – and it's NOT an emergent situation, it's not for a transplant & yet it was still overwhelming and frustrating. I can't imagine how you, Mary, are feeling about something so serious like a transplant but like you say, what other option is there??? Unfortunately, people with chronic illnesses have to face obstacles and as much as it is annoying it's nice to know that there are people like those at the Cystic Fibrosis Foundation and significant others like Peter who is willing and wanting to help. I think each of us have little ways of getting things completed and it's just trying to take one's experience/talents & skills and applying it to this obstacle course that is health care insurance – for me my past career with working with a government care program for children on the spectrum makes me feel like I have a little experience with navigating random rules; and I think Peter has an ability with having patience from his Pastor job; and you, Mary, have a great way of remembering how things worked previously & the ability to apply that knowledge.

    I wish you the best in getting new insurance coverage for your upcoming move and I hope it doesn't cause too much stress or sleepless nights for you two! ((((Hugs))) & support! Give Bonesy my love. ❤️🐾🐶

  5. I am so glad that you and Peter have each other as such beautiful supports. As you know, Mary, I’ve been walking my own paths and they have been really hard and only getting harder. The problem that I have is that I don’t have that support and I am finding myself, more often than not, stuck in the now moments crying and unable to see a way out.

    I just KNOW you will make it through everything perfectly. It’s a shame so many countries have such fractures medical systems. Even here in Canada it is not as great as “healthy people” think it is. Once you become ill, you quickly find out how broken it actually is. Keep smiling. I’m going to look at your store and hopefully on Friday I’ll be able to order something. Maybe a hat or a T-shirt. I love the ones I have. 💞 @thefreylife

  6. Every time I hear about health insurance related issues, I thank the Lord for social medicine we have here in Italy. It’s not perfect, but at least we don’t need to worry about insurance.

  7. Sweet Mary and Mary personal but, are u not on disability? And do you have a PATREON PAGE for those who want to bless you with donations. You have helped sooo many. ???😁😁😁😁😁🤞🤙

  8. This is such a timely video for me. I’ve been dealing with SO MUCH insurance junk lately. It’s been a struggle to stay under my parents insurance for my vast medical needs, and I’m hoping we won’t have to deal with this level of craziness for a while… hugs to y’all!!

  9. You two need to write a book sharing all of your life experiences. It would be an instant bestseller!

  10. You are both blessed to have each other. I can tell you that Peter is a God-send!! He is so involved in your care, Mary. That is extremely difficult to find. I moved from California to Alabama two years ago and had to change insurance companies, doctors and make sure I did not run out of meds. I was on a special medication then that had to be FedExed to me every month and cost over $9000.00 per 30-day supply. Thank God I only paid my co-pay, which was not very much, but I had to make sure to set all that up on my own. I also had to transfer my oxygen service to my new home. I spent hours on the phone and had my moments of tears and frustration. The important thing is to allow yourself those moments, but not get stuck in them too long. I wish you all the best in this process.🥰🙏🏼💗

  11. 8:35 Peter's ready to end the vlog. Mary's grabs camera so as to say….heeeey I'm not done yet! LOL Sooooo funny!

  12. I just want to leave a quick comment and say I can absolutely 100% relate to dealing with health insurance here in the US. It is very stressful and complicated and confusing.

  13. Praying for God to take this and open doors in the insurance world…because it’s a very upsetting situation at times. But God knows what is going and he loves you very much. Oh and it’s ok to cry those tears that is why we need him so much. Blessings

  14. Mary, you are not complicated, the insurance industry is. I am going through stuff with the insurance companies and there is no easy answer. Praying for you guys.

  15. Why don't you share when you pray together? I find it hard to believe that you don't and I know that you don't want to put to much religion in the vlog, but I would like to see you pray together, so I can pray with you too. Sorry if this is to personal

  16. Hugs…insurance and health care is super frustrating. No one who is ill should have to worry about being covered or a procedure being approved.

  17. The UK health care system is quite different for people who aren't permanent residents of the UK. You would have had to pay. But as someone who was born in the UK, I am very grateful for our NHS (National Health Service). We pay for it through National Insurance, which comes out of our salary. And for people like me who are too unwell to work & rely on income related benefits (ie. I have no other possible income), I get free medical care & prescriptions. I am very grateful as I wouldn't have the money for my medications, which literally save my life. Having friends & family over in the US, it breaks my heart that there are people over there who are in major medical debt, even with medical insurance. And I am glad that you can afford medical insurance. I'm sorry you have so many struggles sorting out medical insurance over in the US. I wish it was like here, where you pay something like National Insurance & get your medical care paid for that way. It really would make things so much easier for you. I am all too aware that we have it very easy here in the UK & I'm very grateful for our NHS. Don't get me wrong, there are black holes in our NHS, but for the most part, it is much easier here than it is over in the US & for that I am very grateful. I just wish it was much easier for you guys.

  18. Health care should be a basic human right, now just on an emergency basis but an everyday right. No one should have to struggle to figure out health insurance. A basic need in life should never be this complicated.

  19. It's ok to get frustrated angry sad at times God knows our heart he gave us those emotions too. We are human and certain things in life can be overwhelming. Not getting stuck is the key accept it and get on solution mode. Lots of blessings and may our heavenly Father open all your doors and make this transition as smooth as possible. God bless you've got alot of praying warriors. 🙏🏽🕊️💜👍🏼

  20. Watching the three of you, Oliver makes three , brightens my day 🙂 It is so good seeing you with an appetite. Hugs from Grand Lake NE OKlahoma

  21. The horror stories we hear about difficulties with health insurance are really scary! I hope and pray that your problems will be resolved and your mind put at ease.

  22. When I got sick in the mid 2000s while I was in university the first thing I thought was that I was thankful to live in Canada not the US. At least there is more protection for preexisting conditions now but I don't fear bankruptcy. Canada medical system is far from perfect and I still spend quite a lot but I am thankful.

  23. So happy to live in a country where there is no insurance, just taxes to fund hospitals and everything for my husband cronic illness is completely free

  24. When I lived in Canada I could not believe how easy things were. It was not perfect, but no one even knew what a deductible was. They could not even believe half the stories of our system and the incomprehensible stress people face in the US over health care. No other first world countries makes its citizen endure such madness.

  25. Good luck you two! Insurance logistics is horribly stressful. Good job Peter for helping. I hope it all gets sorted out soon.💙

  26. TY TY TY. You are both a huge inspiration for me. God truely is powerful. He is guiding you all through this journey, and I just know he showed me into your front door, where I’ve been watching your challenges and other life’s hiccups. God bless you 3. Praise God for showing or more so bringing me to your channel. I’ve had such a challenging life myself at late which has had me guessing Gods amazing powers. Let me say, I’m no longer guessing them, I know he is amazing. TY Mary and Peter. God Bless your Journey ahead.

  27. Mary, there are people who work at Duke, that this is their position and their only position, to help patients find if they don't have it, health insurance and Medicare, Medicaid if they qualify. You most probably had MassHealth…which is wonderful. But, I would not worry my head about it, they really will take care of it, or most all of it for you. So, you can concentrate on you, and your new house and enjoying the summer!! (After working 18 years in a hospital environment, you learn alot!) (Oh, my gosh that's half my life now!)

  28. It's not a roadblock it's just a speed bump on your road of life. I hope all works out great and fast so you can relax and enjoy your new home happiness without stress.

  29. Hi Mary 🙂
    Could you do a Q&A on how the insurance works in the US for people with disability?
    Might answers a lot of question we, non-US citizen, always have!! 🙂

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