A podcast that listens, hears, and offers wisdom & hope from caregivers who have lived the experience.

A Supportive Podcast for those Dealing with a loved one with Memory Loss

Health Care Advocacy Tips & Advice

Health Care Advocacy Tips & Advice

00:00:02 – 00:05:00

Welcome to fading memories, a podcast with advice, wisdom and hope from caregivers who have lived the experience and survived to tell the tale. Think of us as your caregiver, best friend. When I learned that despite eating as healthy as possible, we can still have undernourished brains, I was frustrated. I also live in a farming community, so I’m aware that our food isn’t grown as well as we need. Learning about neuro reserves releve and how its formulated to fix this problem convinced me to give them a try. Now I know many of you are skeptical as was I. However, I know it’s working because of one simple change. My sweet tooth is gone. I didn’t expect that and it’s not something other users have commented on, but here’s some truth. My brain always wanted something sweet. Now fruit usually did the trick, but not always. One bad night’s sleep would fire up my sugar craving so much, they were almost impossible to ignore. You ever have your brain screaming for a donut? Well, for me, those days are gone. It’s been about 6 months since I started taking the supplement and I have no regrets. I believe in my results so much that I’m passing on my 15% discount to you. Try it for two or three months and see if you have a miraculous sweet tooth cure, or maybe just better focus and clarity. It’s definitely worth a try. We’ve all had that moment when we know we need to be better healthcare advocates yet still, we hesitate to speak. I’m sure it’s because you were taught manners and you don’t want to offend the doctor or healthcare practitioner. How do we advocate for our loved ones and ourselves without being rude? It’s easy once you’ve heard today’s guest. Stacey lambkin is a pediatric pharmacist. In 2019, she became a board certified patient advocate after experience firsthand, the difficulties of navigating a new health issue. Armed with education and resources Stacy transforms overwhelm and frustration into knowledge and power. As a patient advocate, she teaches family members, patient advocates and health professionals how to better advocate for patients. In this episode, you’ll get tips and tools you can put to use at your next healthcare visit. Understanding how to navigate the system so that everyone feels hurt and understood will make your caregiving journey just a little bit easier. With me today is Stacey lampkin. She is a pediatric pharmacist and an aromatherapist, patient advocate turned patient advocate after being diagnosed with breast cancer at 33. Thankfully in June 2021, she has been cancer free for three years. Stacy has joined me today to talk about how we can become better healthcare advocates for ourselves and our loved ones. So thanks for joining me Stacy. Thank you so much for having me. I’m excited. I have this conversation. Well, I think it’s super important and as we were speaking offline before I hit record, I kind of struggle a little bit with being an advocate because I don’t want to be a problem child and I know that rattling cages and getting all upset and angry doesn’t generally help. But before we dive into all that stuff, why don’t you tell us about yourself and your background and how all of this stuff came to be? Yeah, so my background is, as you mentioned, pediatric pharmacy. So I have been doing that for about ten years. And I’m in pediatrician’s office actually where I do my clinical work. So often people think pharmacists, they think of dispensing medications, but I work hand in hand with a lot of providers on a daily basis. And then as you mentioned in the introduction at 33, I got cancer that was a whirlwind of a time and while I always knew our healthcare system had lots of barriers to it. That really brought to light all the barriers that a patient faces. And I started recognizing that we might need more education around how to be better advocates on both ends, not just patience, knowing how to advocate for themselves, but providers letting helping support patients advocating for themselves. But since then, as I went through that whole journey, I realized that I love education and I really want to help people navigate the healthcare system and have just opened up conversations on how to be better advocates. For themselves, and then I saw that pediatric passion. So I do usually focus on pediatrics and how to advocate for kids. But at all applies realistically the concepts are the same regardless of who. Well, especially when one is taking care of somebody with Alzheimer’s, and they get to a stage where they can’t make decisions or they can’t participate in decisions.

00:05:01 – 00:10:01

It’s very similar to children, and I don’t say that as a derogatory thing. It’s just a fact. It’s like when they don’t remember their last name or their relationship to you, obviously difficult decisions aren’t going to be easy or possible. We just my frustration with my mom’s doctors towards the end of her life. Was more along the lines of they couldn’t cure her or fix her. So there was a lot of times I felt like I got the impression that they were like, we can’t fix or cure her why are you here? So that was frustrating. And I don’t know if there was something I should have done differently. Just transporting her to the doctor was a giant headache. I felt like the monkey in the middle of this crazy whatever between her doctors and their seemingly lack of understanding of my situation and Alzheimer’s in general and my mom who obviously couldn’t understand what was going on and why she needed to go see the doctor because the care home thought she had a UTI. It was just like. He got to be a challenge that I really did not like doing. Yeah, I can imagine to be a challenge obviously taking care of somebody and then the extra stress of feeling lost when people saying, I can’t help you. And I do always just like to mention it’s super frustrating and it’s not right. But at the same time, healthcare providers and most providers, pharmacists are taught to fix people and help people in our society is not great at having the quality of life conversations. We’re so focused on the quantity of life conversations. And what I found is we have to start having those conversations and say, I think some of it is, there’s this innate fear that if we start talking about death or bad outcomes that people run away and hide, but sometimes we have to have those conversations of what are your goals what is manageable for both? What do you want? I have actually been a huge advocate for that and last summer. My husband and I are like, we have got to do our trust you know, our state planning. We are in our mid 50s now, like, come on, people get your put stuff together, and it was comforting on one hand that the lawyer said, oh no, you guys are actually a kind of ahead of the curve. I’m like, well, that’s nice that we’re not like bad children. But that’s not saying very much because, you know, I’ll be 55, this November. My husband will be 57 in October, so it’s not like we’re spring chickens. My paternal grandmother lived just past her 103rd birthday. My maternal grandmother lived to 91 with vascular dementia and possibly also Alzheimer’s. She’s never diagnosed, but that’s my armchair diagnosis for you. Take that for what it’s worth not much. So, you know, it looks like it hit by a bus riding my bike. God forbid. You know, I expect to live to be, you know, I figure like I got another 40, 45 years, which is a really long time. There are days that sounds exhausting. But, you know, the only time the estate planning and the end of life conversations got challenging was when the attorney said, okay, you want all of your state and your assets to go to your daughter, logical? We only have one child? What happens if she dies first? And I remember looking at him going excuse me? That’s a terrible question and he laughed and I’m like, oh, I have to think about that. And he goes, yeah, but she didn’t have to answer it right now, and she is engaged. Wedding is actually being planned finally yay. Thanks for COVID screwing that all up. And, you know, he’s one of 5 is the youngest of 5, and they grew up quite poor. And, you know, at first, there’s like this almost not such a nice thought process of, well, if she goes first, we give him all of our stuff. And then you start thinking of all this negative nonsense that, you know, we just shouldn’t even think about when we’re talking about people that we care about. I think that the attorney came back with some of the documents we had to sign and he’s like, so if you decided what happens in this scenario and I’m like, we’ll be dead. We won’t care. Just give it all to him. And, you know, it’s like really, it wasn’t that big a decision. He’s been in our family for 9 years, almost by the time this comes out it’ll be 9 years. You know, they are getting married. I’m like, do I care? No. You know, like if he’s gonna go gamble it away, not likely. You know, does he help his parents? Okay, that wouldn’t hurt my feeling. Like, I’m not gonna care. I’ll be gone. Fine. Decision then. That was the hardest part of that conversation.

00:10:02 – 00:15:13

And once you just sort of get past all of the overthinking and negative thoughts on other people’s decisions or possible decisions, it’s really not that big a deal. So I’ve been sharing that story a lot because we talked about it. I’m still kicking, so fairly. I think it’s important to talk about. And then even with healthcare and kids, we should be having these conversations. Do you have decisions as a life something happens to me or something happens to anybody? Do you have a decision plan in place to advocate for that person? Do they know your wishes? Do they know your plans? And some of that actually has to go through lawyers depending on the phase of how their age. An adult, we’re talking about caregivers. I think people don’t realize the difference between healthcare proxy who’s a HIPAA share of information in an emergency contact. And I think when we’re dealing with people with dementia or might not be able to answer for themselves and make decisions, is all of that in place. Yes, thankfully, we’ve done that because obviously, having gone through what I’ve been through for 20 years with my mom, and my grandmother, and my great grandmother, although she died before his board so I didn’t, quote, deal with that. I just heard stories. The whole Alzheimer’s conversation came up and I do have a past episode on an Alzheimer’s living will that is even more detailed, and if you want to look at it at a negative way, you know, it talks about things like, you know, feeding tubes and, you know, it basically helps ensure if you can not make decisions for yourself that you have laid out what your quality of life, expectations are in context of having Alzheimer’s or some other neurodegenerative disease. Oh, I said that right this morning. It’s early. It’s crazy. But yeah, you know, it’s a lot to think about, but once you do it, it’s like, oh. Done. You know, it’s like I’ve checked that off. I’m sure the attorney will come back at some time and say, probably time to check in and make sure this is an updated. And we’re all in the same rotary club together so that shouldn’t be too hard. It’s one of those things put a reminder in your phone for 5 years from now, update, trust document. Yeah, that’s great. And I was assigned power of attorney for my mom’s healthcare in my parents trust. So that was a blessing because I know lots of people don’t have that and it’s a nightmare. So that’s going to take us now that we’ve digressed a little bit. It’s going to take us back into healthcare advocacy. First off, get your estate documents situated, help your parents get them situated, even though it’s not a fun conversation, but once you do it, it’s over. It’s not like you have to keep having this conversation a hundred times. You know, I think I would explain to my parents if they were both still around and under different circumstances, obviously. Knowing what I know now, I would tell them, look. I want to make sure that I’m doing what you want. I want to make sure that your quality of life is what as best we can make it and so I have been informed that these are the things I need to do. So let’s get them done. Easier said than done. Some people don’t cooperate. It’s a challenge, so hopefully you don’t have to go to court to get those rights, granted to you to be a healthcare advocate for your family members, but if you do, well, there’s people out there that can help with that. Yes, yes, I’m not a lawyer, but I think it’s I’m glad we mentioned it because I think that’s important that people don’t realize that as a caregiver, there’s legal to be a decision maker. There’s legal processes on paperwork to go through. Now if you want to talk about healthcare and help advocate and help the person make a decision, but they ultimately are the one making a decision. They’re still actually paperwork that we have to fill out, just not as extensive that way. You have to make sure you’re listed as somebody that can be a HIPAA contact and can actually share that information. Not just assume that if you’re a daughter or brother or sibling or some way related that you could just call the doctor’s office and have a conversation. Yeah, they’re always asking if they can leave a message with detailed information on your voicemail. I was like, yes, it’s my cell phone. I’m the only one that listens to it. It’s fine. Yes, my husband could listen to his father. It’s like, I guess just make sure that he’s listed as my yeah. I have to see, I’m always double check. So I recently was helping my dad just go through some things and he wasn’t feeling well and he’s like, can you just call the insurance? I’m like, well, you have to call the insurance, and then pass the phone to me, because I wasn’t lifted. As a HIPAA contact. So as we went through the provider, he’s like, at this point, I don’t care, so at least you can I had to call and ask the doctor question, I was listed. But you have to go sign paperwork and yeah, you might not think about usually it’s ionic medically put my spouse, but people may not, right? You might not think to even do it because you’re like, I don’t feel like filling this out later.

00:15:14 – 00:20:03

And then I think, I think he is, but yeah, I’m gonna double check. Just because, you know, who knows? What could happen? I mean, literally, 5 and a half years ago, I flew off my bike and crash landed onto the pavement and knocked myself out. And thankfully I was with my friends. They used my phone to call my husband. Obviously, I’m still here. Kicking my brain is fine. I cracked my bike helmet all the way through, so there’s a quick advocate for where Mike helmet drives me insane. And I see families riding bikes and the kids all have helmets and the parrots don’t. It just makes me want to smack them and say, what? Their brains are more important than yours? Like, what’s wrong with you? Like I know it gives you ugly hair. It’s nasty. They’re not cute. You know? Yeah, it’s like, I don’t, I don’t wear my bike. I don’t ride my bike. If I have just washed my hair ’cause I look not gonna do it every day. It’s too much work, but, you know, that leaves me every other day to ride a bike. So it’s fine. It’s just these are choices we have to make. But there was one day I actually jumped on my bike went down the hill, which is quite steep. To my nail appointment, and I got to the bottom of the hill and I was like, something feels off. Oh crap. I don’t have my bike helmet on. And I’m like, it’s gonna take me forever to climb this hill to get back to the house to get my bike helmet and then turn around and go, I’m gonna have to like jump in the car and then get to the nail appointment. I’m already like a third of the way there. I’m just gonna ride to the nail place. And I wrote and she commented she goes, you don’t have your helmet and I’m like, I know, I’m stupid. I’m like, I’m gonna have really cute nails and I probably have busted up head. Crash. So it was my way of basically saying I realized that this was a really stupid choice, but it was a choice I made at the time was not smart, but yes, please protect your brain and only ones you have and they don’t regenerate as good as other things. So you have a list of questions to ask your child’s doctor when you go on every appointment you said. This is on your website. Do you have a similar list for those of us caring for an older adult? Now that we’ve made sure that we’re HIPAA compliant, they can talk to us. Yes. Making sure that they can talk to us. As I mentioned earlier, my introduction, even though I spin it for pediatrics. A lot of the questions would be the same if you’re adults asking for yourself or if you’re asking on behalf of someone else. So any of those questions that’s going to help you basically get more information to help you make an informed decision. So asking if they’re making a recommendation asking for more information on that and not feeling silly about it. I think often sometimes when we don’t advocate welf for ourselves, it’s because that if we do understand what’s going on, or we don’t understand what’s going on, we feel silly that we don’t understand what’s going on. So then we’re like, I’m not going to feel that. I’m going to go Google it instead instead of asking the person in front of me. Help me answer the question that hopefully is, as a trusting relationship. A lot of the questions I would always tell people kind of ask the doctor is great, if it’s a medication is that the only medication that’s out there is that the treatment plan I like to say to stay away from cost questions. But if how can you handle the situation if you can’t afford it? So don’t have to necessarily go down the rabbit hole of the provider has to know how much everything costs because we’re talking about healthcare system where you get 15 minutes. So using that 15 minute super wisely. But how can you get back in contact if this isn’t working? What should you do if this isn’t working? What if it’s like what’s the best method? Should you just make a follow up appointment in a week just in case? So it’s kind of some of those questions. But yeah, I think any question that can help you make an informed decision is going to help you advocate better for yourself. Makes sense. I learned, oh, boy, this is like mid 90s, mid to late 90s. My doctor prescribed a Z pack for me, I think. I don’t know it was the most expensive antibiotic on the planet. My daughter was like, preschool age, so like I said, she’s about 30 now, so we’re talking about ancient history. And I remember at the grocery store at the pharmacy, I’d pulled out my checkbook back in those days when we did those things. And they said, so we’re talking, I think this was like 96. And she told me the medication was a $125. That must sound cheap compared to nowadays, but it was we’re talking about an antibiotic. You know, like antibiotics are generally pretty cheap. I am allergic to penicillin, so they do have to find alternatives, but I don’t know there’s like what hundreds of alternatives to penicillin.

00:20:04 – 00:25:01

And I remember putting my checkbook back in my wallet, I get it on a credit card because that was a lot of money. I mean, that was just like holy Toledo. And so when I went back to the doctor the next time, I basically told him I’m like, dude, you can’t prescribe me the designer drugs. I need the generic cheap crap because I don’t have prescription coverage as part of my healthcare package. It wasn’t an option. And he had no clue what costs were. And I don’t say that as a criticism for him because he was a really good doctor. It’s just that’s the way the system is. No clue. So I did, you know, that’s when he told me he’s like, I have no idea what places charged. She said, maybe you should have gone someplace. I was like, I was at the store. I didn’t feel good. I had a toddler like, dude. Like, I’m not gonna shop around for an antibiotic. And the pharmacist had already filled it and I didn’t think you could tell them, oh yeah, no, thank you. I’ll skip it because then I don’t know what you do with it once you fold it so. Long as it doesn’t leave the pharmacy, you can tell them you don’t want it. No, okay. Let’s helpful to know, but not necessarily the best choice. And so he did write on my chart, generic drugs, if possible. So we didn’t really have that problem going forward, thankfully, I’m also very rarely ill, so, you know, it worked out, but it was I mean, I was young enough. It’s probably still not even enough to go. What do you mean you don’t know the cost of this stuff? You prescribe it. And so I don’t know if other people are to wear that, but that is generally the case. They don’t have a clue. And I think, because I’m with all inclusive system, I know Kaiser is not back east where you guys are. I don’t think. Yeah, okay. It was pretty sure that, but I can’t keep track of my own stuff all the time. They will tell you, I have been dealing with shingles for well for over two months now. And when I was not feeling great, you know, and you have to sit there and wait for them to fill your prescription, socially distance, wearing masks in this hallway. It’s just like, I don’t really want to deal with this. Can you just call it into the local drugstore that’s literally a mile from my house. And the doctor said, yes, it can, but it will cost X, whereas if you do it through us, it’ll cost less than X. I’m like fine. It’s not that big of a dollar difference, but I am super frugal. I dealt with it. And my husband, my husband’s on blood, thinners, and he just has them mailed to us. Mostly because it’s one of those situations where oh, I need to get my I need to refill my blood thinners. Oh, I need a better do that. Getting close. Oh, I need to read crap. I got a rush over there. Now I got now it’s like a must do this minute kind of thing, so it took him a little while because it’s their payment system is different than the whole system is such a man. Yes. You’re unraveling a lot here going down this. And I could talk about that side of it forever. That’s true. Sometimes you just have to suck it up and just navigate through it and realize that hopefully some of this stuff is only going to happen once. And I told him, I’m like, you should just have I’m like, we’re not that far like 12 minute drive. From the hospital pharmacy medical center, but it’s one of those things like you know the day that you’re like about to run out is the day that you don’t have time to go over there and deal with that. So I’m like, just have the mail it to us. That way, you don’t ever have to worry about it. And that took him like he had an issue with the credit card. It’s like, I give you a credit card to pay for my premium. Why is this different cash? It was just a joke. It was like, you know, you just kind of like sit there and go, why is this so hard? Yeah, it’s super hard. Yeah, that’s why I wanted to talk to you because you know I’m sure most people who are online like you and I are see people from other countries who are just like, what is wrong with your system down there? Like, we don’t get it. Yeah, yeah, medication stuff. Since we’re talking about them for a minute, our hard and if you’re not in an inclusive healthcare system, it’s even worse. The reason the providers don’t know the price is because the insurance company gets to contract or make the decision of what they’ll pay for or not pay for and change it any time they feel like it. So one minute your medications covered in the next minute. It’s not. Yeah, it’s hard to prefer providers to keep up on that. Would we love it? Where we love their system to tell us that. And do we think our systems that are electronic tell us way more information than they do? Yes. But they don’t. Yeah, frustrating and it’s hard to be a patient because of all that information and you do have to really advocate for yourself and others and participate otherwise you might end up with these massive probably could still end up with massive belso. And so you won’t end up with them.

00:25:01 – 00:30:07

But you do have to ask those questions if it is too expensive, at least know that you could call the provider and say, ask them if there’s a cheaper option. Like you have that option. You mean don’t cry at the grocery store pharmacy because the bills a $125? Yeah, you could still do that too. That was very effective. It didn’t fix the situation, but that’s what I wanted to do is just and sometimes you can ask at the pharmacy. Sometimes the pharmacists do know this unfortunate system that sometimes actually insurance company will spit back something that says, this would be a cheaper option and sometimes the computer system doesn’t. So you could still ask the pharmacist if they know and if it is an insurance they see all the time, they might actually be used to what’s covered in not covered so that you could while you’re there, probably ask the pharmacist first. But once again, it’s not a guaranteed. They might just say, oh, I don’t know. You’ve got to call your insurance company, which you could do to actually call the insurance company if you wanted to try to navigate it yourself. Otherwise, what ends up happening is you called a provider, they sent something else over, that might still be expensive, and you just keep going through that circle until you find something that works. This was I think this was back in the pre electronic days. It was in the early electronic days at best because like I said, this is mid 90s. Yeah, so you had that paper. Yeah, I script so it wasn’t as easy to go back to the doctor to get the prescription to go back to the pharmacy, but now if I don’t know across the whole country, I’m in New York State, we have mandatory electronic prescribing. So if you do, I don’t know. I think it does. I mean, one of the most popular state in the union, I think we do stuff first. Most of the time. But thankfully, I haven’t had to deal with prescriptions much, even with my mom, you know, mostly her prescriptions were filled through an online pharmacy through the care home. So I didn’t have to deal with those at all. I had to remember to ask the care staff. Like, can you please print out the medications? She’s ’cause I never remembered. Whenever we’d go to the doctor, that was like my biggest challenge beyond getting her and dealing with the doctors like to remember you to ask. I’m like, I never understood why they would ask me what medications she’s on. I’m like, whatever you put her on. That was always my decision response. Yeah. But, you know, I got good at caught letting them know mom has a doctor’s appointment on X date. I’ll pick her up at this time. Can you please remember to help or help me remember to print out the medication list to take to the doctor in case they ask? And they were always great with it. Once I got into that habit it was super easy, but not dealing with prescriptions most of my life. You know, just the occasional, you know, whatever you need for bronchitis or whatever. You know, I’m rarely sick, so it’s great. Yeah. I’m trying to keep it that way. This whole shingles thing is killing me. You know, after a year plus with coat, you know, with all this COVID going on and I’ve worked from home for 16 years. There was nothing to do so I was not going anywhere. And they are just starting to open stuff up. And I get sick. And it wear the shingles affected me. It felt like it hurt to breathe, but it didn’t, it was weird. And it was hard to describe and I’m pretty descriptive, but the doctor insisted I take a COVID test and I said, I will do that. Just in case because this delta variant thing is like going crazy, I said, but I’m gonna tell you now, if I’ve got COVID, this town’s getting nuked. ’cause I’m going. I’m vaccinated and I don’t go anywhere. So I don’t know how I would get COVID if that’s the case. And I was like, beyond a 100% convinced that it was impossible. So I’m like, well, I know how the universe works with me. So I better double check. I better just do it, and it was negative. And that delayed getting the shingles vaccine, not vaccine, which is coming. They’ve ordered it for me. I’m still waiting for my system to clear up so I can take it. It took a while to get the diagnosis, which has just been lovely. So I’m mad that my body attacked itself. Yeah. Thank you. And I could have gotten something from somebody in the grocery store. It’s crazy. But yeah, it’s like the weirdest thing and they were really good when I said, well, you know, I’d like to discuss the shingles vaccine with you later this year. The next thing I know I got a message from the healthcare system that had been ordered and I’m like, and it said specifically to take it when it was all cleared up. And it’s still not all cleared up. So it’s like, okay. Because I’m gonna postpone that appointment. But that leads me into learning how to advocate for yourself and your loved one, which is the whole point of this conversation, although we keep going around in the circle around that. Which is very typical of money. I have learned that I don’t know if it’s a good thing or a bad thing. Not to, you know, like, I’m sure, and I don’t know how much you deal directly with patients, but I can only imagine what dealing with people who don’t feel good who are whining and belly aching must be like by the end of the day, I am sure there are people you guys would like to punch.

00:30:09 – 00:35:01

I won’t answer that question. She’s taking the 5th. Got it. So I remember once I don’t remember what it was, I had some seasonal something or other that it was yucky. It was nasty. It was this was pre COVID. This was many years ago. It was so bad when you went to the doctor’s office. They were like, your coffee and put this mask on. And I’ve never been to the doctor and have them do that. You know, in the old days, when my daughter was little, they’d be like, oh, your child is sick go wait in the car, which I always hated. I always thought the healthy kids to wait in the car, but mostly because the car was not it was either hot or cold, it was never comfortable. But nobody asked my opinion. We just did what we were instructed. So I have had the situation where they’re like, well, how are you doing today? Well, I’m okay. No, actually I’m not. I’m at the doctor’s office. Like, I don’t want to whine and complain. Because I really don’t want you guys to want to punch me, because I really am a nice person. And I have sometimes I feel like we’re trained just in general politeness to not complain not to be like, oh my gosh, this single strass is just like going on and on because I don’t know that’s even helpful. So how do we indicate that we feel horrible in a positive? I don’t even know if these puzzles. And a positive constructive way. There we go. Yeah, I think the constructive is probably that keyword there. Because I don’t expect people to be positive when you’re having hard conversations and their kids aren’t feeling well or you’re not feeling well or somebody we are with, isn’t feeling well. But I think the being succinct and knowing what’s going on, and being honest. For some reason, we’re also trained to tell, because doctors are authority figures to tell them what we think they want to hear. And I think that you’re telling them what you think is going on with yourself and what you think they want to hear and what medications you may or may not be taking because you don’t want to lie that you weren’t taking the medications because you want to get in trouble. So there’s kind of all that. So when they’re asking, what is going on to try to be as factual as possible? And once again, when we think that, unfortunately, only often have 15 minutes, try not to tell your whole story of it took me if it was really important to the event. You fell off the ladder then said you fell off the ladder. But you don’t have to say, I follow up the ladder because I was doing the shingles. And then I didn’t do this. And then I was went downstairs and back upstairs. And I put the bucket on the wrong little run, so that’s why I fell. So if we can try to say what’s going on so that help the provider not have to filter through all the information. And I don’t want to say you can’t tell stories, so we don’t want to connect with you. You have to build that trust relationship and get to know people. For sure, but kind of saying, what is what, what’s really going on? Does it hurt? It hurts, say it hurts, don’t downplay it at all. And you don’t have to I think it would be factual and still be polite. I think the politeness more comes with the hi, how are you? Well, I’m not okay today, but thank you for asking. Thank you for asking is the polite piece. Thanks, I’m here, I’m not great doing great. So I think we sometimes mix the positive and polite together and you don’t necessarily have to be positive, but asking their questions. And then the other along those lines in addition, another thing that kind of popped into my mind is when we want to ask the provider about their opinion on something that we looked ahead of time because we all look ahead of time of what could be going on. And I know that can cause conflict when you’re like, oh, but Google said, and I’m saying Google not everyone doesn’t just use just there’s more to Google than Google. But that’s where people that’s where I think some of the frustration comes in and asking that question of I read about this. Can you provide me like your professional opinion versus saying, are you sure you’re like instead of asking them what they recommend and then not liking their recommendation and then saying, oh, but I read this online. So it’s that stuff that, honestly, I say, it’s probably the most frustrating if I’m looking at it as me as a provider. So as a patient, how do you come in with that information and don’t ask them for all their opinions first and then give them all the information you know? Tell them this is what I have going on, I know you don’t like it when I could even put those things in there. I know you don’t like it when we like stuff up. But I did, so what is your professional opinion on this? So kind of just using those preemptive words. That makes sense. Actually, try not to look stuff up because I’m sure most people who have looked stuff up have experienced the oh, you have this strange rash, it could be a skin irritation, or you could be dying.

00:35:02 – 00:40:09

It’s like everything leads to dying. It’s like, I don’t want to read that crap. Part of my struggle with getting diagnosed with the shingles is that we did everything on the phone. And so I had to send her pictures, which the placement of the rash is kind of a challenge to photograph, and it was like I did at one point tell her I just came back from the medical center from the COVID test. I’m more than happy to turn around so that you can look at me and talk to me and we can just cut through the chase and make this happen. But that wasn’t an option. I did get assigned to her, which is probably frustrating for her because there were no general physicians in my area. I think I mentioned this earlier that we’re taking new patients. And when I went in like as an emergency and appointment for this weird issue that I get with my ears from wearing my AirPods too often, the doctor said, oh, well, you’ve talked to so and so online, did you like her? I’m like, well, she did a pretty good job diagnosing this ear thing. You know, on a telehealth call, which I was pretty impressed with because you can’t look at somebody’s ears and you do a pretty good job diagnosing. You know, I’m gonna give you pretty good props for that one. So he assigned me or somehow that I got assigned to her. And I like her on the phone. I’ve never met her in person. So that’s kind of a little bit frustrating. But I totally lost my train of thought, which I totally hate with. Part of it, my issue with her is she doesn’t have a clue about me. She doesn’t have a clue about my family history with Alzheimer’s because that is my biggest, I don’t want to say concern. That would be my biggest healthcare worry. I don’t worry about it, ’cause I do everything I can to prevent coming down with Alzheimer’s or having awesome, I’m not sure you come down with Alzheimer’s, but I do everything possible to delay onset of it or prevent it. So she doesn’t even know about the Alzheimer’s in my family. She also doesn’t know that I have a really high tolerance to pain. So when people say, what’s your pain threshold like? On a scale from one to ten, it’s like, do I tell them what other people probably would say or do I tell them what I think? I find that I generally skew a little higher because if I tell them, well, it’s kind of a three. They’re gonna be like, oh, well, here’s an aspirin, you know? Maybe a three is bad. Yeah, and I think building that trust is huge. And if you don’t have that or providers laughter, you’re fighting a new provider or even if you’re bent with a provider forever and you haven’t built that relationship, I think it’s okay to keep reminding them. I mean, yes, I hate to say it this way, but we think our provider knows everything about us and we do have the charts and we look in. But we’re all forgettable sometimes, unless you’re there, if you’re there, especially once a year, even if it’s in your chart from the last note, that they’re looking quick, they could have missed it. So if there’s things that you think impact your story, just so you know, here’s what’s going on with me and I want to remind you that I have this family history in case you didn’t see it. And you could, like, I said, some of those softener where I was like, in case you didn’t see it. Those are kind of the ones that I like to throw in there if you’re trying to be polite. And instead of just assuming they didn’t see it or yeah, so kind of anything that I say is you know impacts you that you might not think the provider always realizes. And same thing with the pain threshold would be completely I just want to tell you my pain threshold is usually low. I think it’s a three, but probably compared to somebody else that it’s probably a 5. So how do you want to take that? So let them kind of interpret it but kind of give them both options and see what they do with the information. That’s a good idea, because I broke my collarbone in the orthopedic surgeon asked me, what’s your pain level? Why? I don’t remember what the answer was. And he goes, really? And I was like, this is supposed to be worse? He was like, oh, look at me flies my answer. Well, ten is crying that I wasn’t near crying, so I’m like, okay, we’re not at the ten. This is not fun, and I’ve never broken any other bones ever, so 49 and a half was the first broken bone. And it broke in like a V and I’m fairly certain the broken tip was poking the muscle, because sometimes it would be, it was not fun. Until they fixed it with the plate, it was like there were times when it was like, I feel like there’s this sharp jabbing stick in this muscle. This was just it was weird and it was uncomfortable. And you probably said it was a pain level one. I guess it also goes back to like am I dying from the pain? No. Do I want to, you know, do I want to die from this pain? No. Okay, so I just kept dialing it back and I kind of learned through that experience that dialing it back isn’t necessarily smart, but I also learned that narcotic pain relievers are not fun.

00:40:10 – 00:45:01

Yeah. And the other with pain because we’re talking about it too is yes, they ask you scale one to ten. And if you’re getting a nurse or it’s like a history question, you might just answer. But if you’re having the conversation, as you talked about with your team, goes, if it’s impacting your quality of life, add that in there. Like I said, don’t have a 15 minute story about it, but just saying, I can’t do my activities of daily living like shower right now because yes, it doesn’t hurt, pain, it’s like a 5, but if I shower, it’s a ten. Yeah, so you could kind of add a little bit more context to even when they ask these kind of very what you might want to answer, just quickly factually because it’s so pinpointed. That makes sense. That’s actually, I’m glad I sent her the message about the quality of life in this issue and it’s and it’s hard because it’s like, I know she’s super busy because she wasn’t taking the patient since she got me stuck into her roster. And we’ll see if I get a response. If I don’t, I will call the advice nurse because it’s like I’m like at the end of my I’m done with this issue. But I also working on it on my end. Like, okay, well, if I sit, I might just have to ice it multiple times a day and you said, use those stickers that you put on kids for fevers, which, after I have lunch, definitely going to the drug store and looking for. Because that would be a lot less obvious under my shirt. If, you know, and if I just lose the 30 pounds, I’ve been trying to lose. I think it would help too because everything rubs together after a while. It’s like, it’s just not fun. So one of the biggest challenges of caring for somebody with cognitive disease is the difficulty of getting to the doctor and then taking into consideration under these circumstances, when do you think we should get a second opinion and when should we accept the status quo? Like, for example, at the very beginning of the pandemic, my mom was non cooperative with the caregivers. If she slept in broke her leg, and they didn’t, I was because she was in advanced stage of Alzheimer’s. And I know from talking to people like yourself and my research that anesthesia is not necessarily a good idea for older adults and for people with already a brain issue. So I was fairly certain I wasn’t going to fix it, but I wanted, you know, I needed advice. And of course, those at the beginning of the pandemic, so it’s like, oh, good, I get to do all of this stuff talking to people on the phone, which was interesting. I don’t know if I would have gotten a second opinion in that circumstance, but had she not been in later stage Alzheimer’s. I might have wanted to. I mean, the orthopedic surgeon at the hospital, she was in a different insurance provider than I am. And it’s not as good. It’s actually not my opinion. It’s actually a fact. But he wasn’t super interested in, like, you know, that we all know surgeons like to do surgery. So that’s their go to. He did not try to strong arm me into doing surgery on her. So that was my first clue that this was probably not ideal. He also said she was going to need physical therapy, whether we did surgery or not, so I called in a traveling physical therapist who she practically slapped out of her room. And they’re like, I’m not paying you another 150 bucks to go be abused by her again not to have any success. So she sort of helped make the decision and it was definitely the right decision because as most of us know when an older person falls, even if they don’t have Alzheimer’s and super healthy, sometimes that bone that breaks is the last straw and their bodies just give up and that’s what happened with my mom. She fell on March 8th and she died on March 31st. So I’m really glad we didn’t put her through any more trauma than necessary. But there was also other medical issues with her that I declined to deal with because of her Alzheimer’s, but had we gone back 5 years, I might have had a different opinion, but getting her to and from the doctor was yeah, yeah. That was more stress than anybody needed to deal with. Her me, the doctor. So under your personal opinion, when do you think is important to get second opinions? So putting that it’s difficult to get to the doctor aside piece because there are barriers to getting a second opinion. So I encourage and so assuming in an ideal world where none of that was a concern, I think usually a significant diagnosis, I almost always get us to try to get a second opinion.

00:45:02 – 00:50:00

In my case, there was looking at cancer and not that I wouldn’t believe they were cancer, but part of the part of this second opinion is treatment options as well. Not just solidifying the diagnosis. I actually had my second opinion before my first opinion. I knew I wanted a second opinion. So as soon as I made two pinions back, they happened to be back to back. And there was nothing wrong with waiting for that first opinion to get your second opinion. If you are going through something that you know is probably going to be a long course or something severe, I always say, if you can get the second opinions because it’s not just diagnosis, it’s treatment as well. And then the other kind of red flags to get second opinions would be if something doesn’t sound or feel right. If something just feels off with what you’re told, get the second opinion. And it could be maybe it’s your primary care that you trust, but just ask them if there’s a specialist. That’s the second opinion. It doesn’t always have to be specialists. And then also, as you mentioned earlier with the physical therapy, sometimes maybe you need a physical therapist opinion if it’s like a mobility issue. And sometimes you’re second opinions might not necessarily be another provider. So usually we say second opinion we think to an expert opinions of a doctor, but I think anytime something just doesn’t feel right if you can, you should get that second opinion. And then the other kind of way around it because is if you can’t access another provider. So the hard part, so if you’re in a hospital. But you still might be able to act like they’re not going to get another physician off the floor, but you might be able to still ask is there a specialist in that case is there hospice? Is there somebody else who could get another opinion? And also, once again, we were talking about earlier about how do you word it? You don’t want to find the doctor and be like, I don’t trust you. Can I just have a second opinion? You could just say, I really appreciate what’s going on. But is there somebody who specializes in this area to provide me more information to kind of spin it that way? And I will say most doctors if they’re great doctors actually encourage second opinions themselves. It’s a kind of a backup for them. I mean, like, none of this is medicine’s not black and white, as much as we might like it to be. And we have lots of knowledge about lots of diseases. But, you know, COVID is giving us a very good education on we learn more and more is every day goes by. What we learned what we knew march of 2020 was different in March of 2021, and yes, that’s frustrating, and I am fully vaccinated and I don’t like the fact that, you know, I have to wear a mask to go to the store. That was one of the reasons to get faxed was to, you know, kind of resume normal life. But you know what? I’ve had shingles, which means my immune system is not a 100%. So thankfully I will wear a mask because I care about myself and everybody else. You know, it’s not that they lied to us, so they, you know, whatever. It’s like, look at how we learn new things in our opinions change. Why is that a bad thing? So that’s how I would approach asking for a second opinion. And for myself personally, I like, I like to know the why. I mean, I need to know details. If I can’t have a second round of antiviral, why? Explain it to me. Oh, that’s why. Okay, that makes sense. Thank you. I will not harass you anymore about that. You know, it’s like you want to get me off your back? Answer the why question which is why I’m terrible at math. There’s no surprise. Two providers know that we get passed around a lot as patients and it’s all sometimes in our own heads. But if they’re continually told to stop passing me around, then they might not give you a second opinion, not because they don’t want to, because they might have just had ten patients in a row that were annoyed that they offered up a second opinion. So I think always write your day plays into your day and let healthcare providers are still people. And they still get kind of see patterns and don’t do stuff or do stuff depending on their timing. So I don’t think it’s ever bad to ask those wise. And if they say, oh, I’m not sure. Be like, oh, do you know anybody who might I know you’re limited in your time? Do you know anybody who I could get a second opinion with and or do you have somebody that you could not work to that could answer the way and then you can get back to me too. That’s always we actually do a lot of behind the scenes talking. You’d be surprised. And on office, if there’s more than one provider, they might actually be talking to another provider. You’ll make sense. And I really appreciate that you are giving people ways of asking the tougher questions and wording things so that we are not the patients that you want to punch the day. I don’t want to seem to chart this person to paint in the poop. Yeah. And I think it’s hard on both bends, because like you said, you don’t feel well. And some patients are like, well, I should be the one that has to be nice. I don’t feel well. And I think ray providers, we know we went and they’re going to get patients and people that are crabby, and you’d probably be crap if you’re in the same situation.

00:50:01 – 00:55:01

So we need to fix both ends. So I also don’t want it to sound I hope it’s not sounding like, hey patient, you have to be perfect because I think providers need to also be just as creative kind of opening up conversations. But no, I’m not getting the sense that we need to take more effort. I think for myself and I hope the listeners are feeling the same thing as it’s like, how do you ask these questions or how do you say, you know, wow, I’m really confused on this. Is there somebody that can help clear things up for me or can you ask somebody else and get back to me like the things that you’ve suggested or just I swear I’m gonna have to make a transcript of just the talking points for the provider because I think there have been really great and, you know, it’s hard because you want to be polite and you want to be a responsible respectful person, but you feel like crap and you’re confused and you know, in your case, you had cancer. In my case, I was dealing with a mom who had Alzheimer’s and that no clue what was going on. Why is she here? Why are we doing this to her? It’s just like, you know, it was just easier to just want to put your hands over your face and go. No, no, no, it’s not happening. I’m not dealing with it. Which obviously is not not ideal. So I have one last question. Obviously, COVID has exploded the options of telehealth. They just did recently learn some barriers to that. Like, if my doctor’s not licensed in New York, which I would assume she is not, she wouldn’t be able to help you. If for whatever reason you somehow connected with her, I personally love telehealth appointments ’cause I really don’t like to have to go sit in the waiting room and all that nonsense. I hate all that crap. But I realize I have a geriatrician that talks regularly on the podcast and she is a huge advocate for basically, and I apologize if anybody’s like a little a little shy. She wants to like strip you down to your briefs, and she wants to see your whole body. Because she’s had cases where things have been missed because they basically don’t undress their patients enough, which that sounds really kinky. I mean, you’d have to read her. She’s huge on Instagram. It’s doctor Elena moochie. You guys can find her if you go to my links on Instagram. You also know she’s been on the show a lot. When in your opinion, should we say, I have to suck it up and actually just go to the doctor’s office. And when is it maybe okay to just say the next available appointment I could get is actually a telehealth one, even though I have no idea how they’re gonna diagnose this weird stuff going on with my ears. I don’t know, am I gonna put my ear up against the webcam? I don’t know what’s gonna go on there. And that’s what my situation was this past march was like, it was a Friday. It was in between Zoom calls with senators and it was like I either have to do a telehealth call or wait, and it was super annoying. It was really itchy, and it was just like I’m over this. So when do you think we should suck it up and when do you think a telehealth appointment might be sufficient? I love telehealth too, and I think that it is expanding just the way we practice medicine. And access is a huge barrier. Especially with COVID times, you can’t even get, as you mentioned into the doctor. And I think that if you aren’t feeling well, any appointment you can get. Because then if the doctor sees you and they’re like, I need to see you in person. Behind the scenes, they might find an appointment for you that wasn’t available before. So if you’re just making an appointment and you’re talking to the schedule, they don’t know what’s urgent, what’s not urgent. So I think any appointment you can get. Most insurances don’t restrict you that you’d have to wait a week to see another point there are lots of insurance barriers and lots of rules that don’t quote me on if you’re insurance tried to charge you twice now. You would have to probably pay your co pay. But I would say get the appointment, now that telehealth is available. If that’s the appointment you can get, even if it’s a rash, that’s what the healthcare system did. And if the doctors keep seeing people that show up with telehealth on rashes, then they need to make sure that there’s more appointments available for rashes that they want to see in person. So obviously, once again, if you don’t have the financial, it’s like a $500 copay just to see the doctor that might not be the bios feasible option. And if it is something physical, then you might maybe want to wait the extra couple of weeks. But or call the office. Call the triage network or advice nurse or they all have different names depending on the office. Instead of just calling the schedule or maybe ask the nurse for advice too. Because sometimes they can get you in. But if the only way to see somebody is the telehealth, I say go for the telehealth. And then if the provider needs to see you in person, then that’s kind of their responsibility to help get you there in person.

00:55:01 – 01:00:00

So you think it’s there decision that we should rely on to be in person versus whatever is available? Yes. Honestly, I asked. Yeah. In terms, obviously, if they’ve never seen you before, then. For that shoes. Yeah, like they’ve never seen you before that for that issue. What else do you want to do? Like you said, you’re not going to wait three months for something that’s bothering you. Now, if you have appointments back to back, say they have an appointment at 8 15 to telehealth and 8 15 in person, same date saint name and time. And you’re like, ah, I don’t feel like going to the doctor, but they probably need to look in my ear, I think we all know. You should probably if you can fit in the appointment and fit in the in person appointment. But if it’s more of a, I’m not going to be able to see the doctor or talk to anybody for three months. Get in there and see the provider. And then they can try to push things along if it’s important. If that makes sense. I don’t want to say always choose telehealth if they’re I need to see the doctor. I agree that I think we were just mentioning, yes, often times there’s physical symptoms they might not realize you have that you can’t see your back and you’re by yourself. You’re like, did you not realize that Rach all over you? Holy moly. Well, that’s how I was diagnosed with shingles was after I talked to the doctor on the phone, let’s say I talked to her via messaging, you know, the in health messaging system. And then she said, I think you need to COVID test, which was like, are you kidding me? But I did it, because mostly, it was mostly like, I am a 100% certain this is not the problem, but I’m not a doctor, and I would really hate to be asymptomatic or asymptomatic and spread it all over the place. My daughter’s immunocompromised. And I’m like, whatever, you know, I’ve been through so many things in the past few years with COVID tests just add to the experience. So it was not that big a deal, you know, do I want to do them again? Not really. Didn’t hurt. Not a problem. And then as I was coming home, she called me, which was good because I technically had an appointment with her, but it was a phone call appointment, but it said it was in person and I was really super confused. So I would have ended up back at the medical center like two hours later. But then I talked to her in the cars, I was driving home from the medical center, and then she asked me if I had a rash and I said, hang on a second. I gotta pull into the garage. Because I can’t look at myself while I’m driving. Let’s go. You could call me back and I said, no, hang on a second. I’m like, two houses, one house, okay, wait, now I’m in the garage. I’m like, now the Wi-Fi will pick up the phone call. Okay, we’re good. Okay, I could try the car was like this weird, you know, it was like less than a minute that she had to wait for the technology to allow me to examine my own self, but then she had me send more photographs via the messaging app. I woke up on Friday morning. It was so right before the 4th of July. I think the 4th of July was the Saturday or Sunday. And she said, you don’t or my COVID test came back negative Thursday night and she messaged me your COVID test came back negative. I think you have shingles. I hadn’t even gotten out of bed. I looked up shingles. I’m like, yep, that looks pretty pretty similar. And then she never responded to the my response to her message so the next morning is Saturday I called the advice nurse. And they patched me through to the emergency doctors, the on call called on call. Yeah. And they said, if I said the rash is getting worse and they’re like, can you send more pictures? I’m like, yes, I can. So literally using my cell phone taking the picture and the phone rings and it’s the doctor and I’m like, oh, I was just sending more pictures. She’s like, I don’t need to see him. You’ve got shingles, and I’m like, are you sure? I said, I’ve already taken the picture. She’s like, well, you could send it, so I did. And I uploaded it. She’s like, yep, nope, that’s shingles. I’m like, this is the weirdest thing. Nobody’s ever like touched me, looked at me. I was appreciative that I didn’t have to leave because I didn’t feel good, but it was just the weirdest. You know, having not had telehealth ever in my life until this year was this it was very unusual, and I really, really wish we could have done it with my mom, so I’m hoping that there’s I’m hoping going forward that there are more options for like in home urine tests like collection, not just the test because my mom likely had an ovarian tumor, but the gynecological oncologist that is a real big mouthful. They wanted me to come into the office to talk to them. I’m like, no, you can talk to me on the phone. My mom there has insurance God can’t get, so you can Bill her insurance, I don’t care, but I’m not driving to your office to talk to you about this. So I never got it diagnosed, but she would end up with blood in her urine often enough that the care staff would freak out.

01:00:01 – 01:05:02

And I would rush her over to the doctor and collecting a urine sample from a woman who doesn’t understand what’s going on. Not fun. And I always had to remind the doctor’s office. This is my huge frustration with doctor’s office. It’s like, no, she can’t pee in a cup. Last time we were here, he did the little hat thingy in the toilet. Why do I have to remind you people this? Why is this not in her chart? Like why is there not a big red sticker on the front of her chart that says advanced Alzheimer’s? I swear, they forgot she had Alzheimer’s every time we were there. Made me insane. So I would have loved to have been able to go collect urine and take it to the doctor’s office or I just did a colorectal test. You know that they mail you and I feel very bad for the mailman. What you’re sending back is not fun. But, you know, it’s like so much easier, you know, when they need specific, bodily fluids to collect them when it’s convenient and not have to try to do it. Under pressure. I’m trying to keep this not gross in case people are eating. But I would have loved it like they barely needed to see her. They just basically needed a test for years. I’m really hoping we move forward with more at home collection of samples. I don’t know. I think as patients, we are going to start requesting that more. And there’s usefulness to it. And like you said, even the telehealth. My I did a lot of my cancer care an hour and a half away and some of it here and where I’m from, but so yeah, now that I can do telehealth for some of my follow-up appointments with my surgeon, my oncology oncologist is here. So I like to see him in person. But for the surgeon, who’s just kind of doing a quick check, I’m like, well, I just saw my oncologist. He just did a physical exam. This is nice. I could just do a telehealth check in and not drive the hour in half and take a half day off of work. And so I think as we start seeing the benefits on both sides. And even with the home collection stuff, I think people are going to start realizing how it’s helpful and it’s going to take time now to take what 7 years for things to culture shifts to change. So it’s not going to happen overnight. But I think if anything good about the pandemic came through, I think, but the telehealth is a huge one. I appreciate that to the pandemic did drop kick experience on some changes because you know at 55, thereabouts. You know, I would prefer to live the next 45 years of my life 50 years of my life. With some of these newer changes that I hope are coming. In my more negative moments, it’s like, you know, none of this stuff’s gonna change fast enough for my husband and I, I see it coming, but I don’t see it coming fast enough when it’s frustrating, but you never know. I guess maybe we should advocate for hey, and I do remember asking once if I could collect mom’s urine and I forgot why they told me no, which they probably wouldn’t tell me no now. She was such a pain in the butt to deal with. It would have been better for everybody involved if they had just said, okay, here’s what you need to do to make sure that it’s clean, you know, specimen and you know, you’re gonna have to collect it and rush it over here. Which was fine. And the other two just and an advocacy tip for things like that as you were saying how frustrating it is. When you’re on the phone, you could remind them every time. Once again, you think they might even have that in the chart, a big red flag and it’s great we get it’s called alert fatigue and people are just like, okay, okay, okay, okay, and don’t necessarily always read all the alerts. So on the phone, remind them. And then the other, if it was frustrating and the whole office was like, this is frustrating. Ask the provider to put in a note to say, know this person can do it at home. And then when you call them, they’re like, now you have to come in, but be like, can you look at the note from August 30th that said the doctor approved? I don’t have to come in for this. Why do I all of a sudden? And have them kind of write out the steps they’re supposed to tell you or so you can kind of ask some of those doesn’t always work. They might say no, but you can get them to document and ask know the date though that it’s documented in the chart around the time frame because it’s a pain in the butt to look through charts, honestly. It’s like an unorganized drive. You have all your documents on organized and they’re on 15 different folders. Patient charts actually aren’t very neatly organized on our end. I think that actually is beneficial to know because you’d think that they would be because you’d think they’d have to be. But it’s hard to organize stuff because you never know where something really like today it fits well in this folder, but tomorrow it might fit better in that folder and it’s like I said for organized person and every so often that quarterly I go through my Dropbox folders and it’s like, I haven’t opened that one for a while. And I move him around and then I can’t find stuff ’cause I’m yeah. Yeah, so the easiest way to search for stuff, at least in the computer system I use that work is by date.

01:05:03 – 01:10:00

You can find it. But we don’t have one electronic system or one health network. So if I have two different doctors, right, run two different platforms. So one so again I know we’re wrapping up. So I’ll go too far into that. But I think it’s helpful to know at least that if you can figure out kind of try to keep track of your own records a little bit and in terms of knowing that it’s easy to get frustrated and be like, oh, it’s in my record. But if you know that it comes up consistently, just remind them where it is in your record. So then you can be like, remember the MRI that I did that three months ago? It should be this state if you want to try to look in your chart just to try to help each other out. It does take two to get it all handled, and I do have, and I without my notes in front of me, I don’t know if it’s before or after this one. An episode with a gal that is dealing with while she sometimes we think our situation is difficult. She has a severely autistic child, and she had a grandparent, I think it was with Alzheimer’s. So, you know, I don’t even want to think about that. Scenario, but she created basically these different binders to help navigate the educational system, which obviously, the Alzheimer’s, we don’t need to do. But also the medical profession and keeping track of things. So you can there are items to purchase and apps and all kinds of stuff to help keep you keep track of your own information, which I personally think is a smart thing to do just for safekeeping because lord knows what could happen, you know? Yeah. I mean New Orleans has no power and, you know, if you need your medical records, you might be or a doctor closes. If a doctor’s office closes down, they should pass those records on, but federal law doesn’t say they have to keep your medical records for life. So they could disappear if they were more than certain years old. I don’t know all the time frames off the top of my head. Same thing with medication list. Pharmacies only have to keep them for so many years. So if you’re like, oh, my kid had an allergy and ten years ago. Can you look up what they were on? No, likely not. It’s probably gone. So 8 years ago might be gone too, yeah, though it’s crazy. Well, this has been super fantastic. I so greatly appreciate all of the advice on how to talk to the providers because I think some of us get angry and don’t talk nicely and other of us try to be very polite and not a problem child and talk to, you know, we downplay what’s going on, so I think we provided some really super terrific information, and I’m glad that you are three years cancer free. Thank you. It’s terrific. And this has been fantastic. Now I’m gonna go with my email see if my doctor responded to me. Yeah, hopefully they did. That’s probably too early still in the day ’cause it’s just now noon. Pretty sure she hasn’t responded, but but look, you never know. It’s been terrific, so if anybody has any questions, I’ve linked Stacy’s website in the show notes. You can check out what she’s doing she does mostly photograph the focus on. Apparently I have something on the mind there. Does primarily focus on children, but I bet you she could probably help with some other questions if you really were nice to ourselves. Thank you so much for this. Thank you. Well, it looks like I’m gonna have to learn more healthcare advocacy because I did not hear from my doctor for over a week. Thankfully, Stacy is now offering courses. You can find the link for those also in the show notes right under the link for her website. Coming up next Tuesday in your ears is an episode on storing and sharing memories with echo box. It’s the story of two people who saw a need and decided they were the ones to fill it. Coming up next is a quick blurb on a new health focused social media platform. I hope you guys will take a listen. Are you looking for relevant, trustworthy health, wellness and lifestyle information? I’m joining the launch of retreat. Retreat is a first of its kind, free social media app that focuses solely on health wellness and lifestyle content. The platform hosts live, interactive audio chats, let only by vetted health experts while allowing experts and users to post and share videos, pictures, and thought pieces. Users can also meet others that share similar health and or lifestyle challenges. Informing communities of like minded individuals, retreat wants to empower people to share their experiences with others to guide them on a journey to better health and living. I’m joining because I want a less crowded space to build a community of listeners, caregivers, and other experts.

01:10:01 – 01:10:07

Watch my current social media feeds for more information about their official launch date. Think we’re all going to love this new platform.