Turning Insight Into Evidence: A Journal for Caregivers with Amy Lamb

You know your child best. The challenge is proving it in a 15-minute appointment or during morning rounds at the hospital.

In this episode, Emily talks with Amy Lamb, creator of My Health Journal, about a simple journaling system that helps caregivers track symptoms, medications, sleep, stress, and daily observations in one organized place.

When patterns are documented clearly, doctors can see what you see. That’s how Amy uncovered her mother’s misdiagnosis after years of stalled treatment.

This isn’t about perfect record-keeping. It’s about reducing mental load, easing communication with providers, and turning your instincts into usable evidence.

If you’re tired of trying to remember everything, second-guessing yourself, or leaving appointments wishing you’d said more, this conversation is for you.

As a thank you to our community, Amy is offering Empowered by Hope listeners 20% off their own My Health Journal. If this feels like a tool that could help you stay organized and confident in appointments, the discount details are listed below.

About Amy Lamb

Amy Lamb is a Certified Health and Wellness Coach with nearly 30 years of experience in the financial services industry.

Her work was shaped by her mother’s serious health crisis. After years of appointments with multiple doctors, conflicting opinions, and treatments that weren’t working, Amy began consistently tracking her mom’s symptoms, medications, nutrition, sleep, and daily changes. Clear patterns emerged — and eventually revealed a misdiagnosis.

That experience led her to create My Health Journal, a simple, structured tool designed to help caregivers and patients.

Her goal is simple: help people take control of their health story with clarity and confidence.

Learn more:
 https://hereistomyhealth.com/

Purchase a journal:
 https://hereistomyhealth.com/shop-1

Discount for Empowered by Hope Listeners

Use promo code PEN20 for:

20% off your purchase at
 www.hereistomyhealth.com

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Transcript

Welcome And Purpose

SPEAKER_00 0:13

Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, Empowered by Hope is here for you.

Why Self-Preservation Not Self-Care

Amy’s Caregiving Story Begins

SPEAKER_01 0:23

Though we wish you didn't know this heartache, we're so glad you found us. But together, we can walk this journey out. Hello, welcome to the Parent Empowerment Network Empowered by Hope podcast. We are elated you are all listening with us today. You're here with us, and we feel honored and humbled to walk with you in this journey as you are caring for your child who has complex medical needs. We today have Miss Amy Lamb with us. And the voice you're hearing right now, I am Emily, one of your co-hosts. Miss Ashlyn is not with us today, but we are elated to have Amy Lamb. And what you're going to get from today's episode, I'm so excited for you. Honestly, I think it would have been so helpful for me to have heard eight years ago when I was at the beginning of my journey with my daughter, with her complex medical needs. But it's still very helpful for me to hear today. And as Amy and I were commenting before we hit record, we have come to learn that as we do this work to support others through the journey, inevitably we end up finding that it helps us a lot along the way. Maybe even more. I don't know. But it's amazing to see how getting to turn around and help others helps ourselves too. So this conversation is relevant no matter where you are. If you are brand new to having a child with complex medical needs or you're several years in. And honestly, many of you probably have some great insight to add to this conversation. So looking forward to hearing your comments, your feedback, um, and your thoughts to continue the conversation. So today is all about what we are calling parent self-preservation. I bet most of you thought I was about to say self-care, and I intentionally did not say self-care, even though that's what we're talking about. Um, but it's because oftentimes that term self-care, especially when you are in the throes of survival mode, carries a weight of um guilt and adds a lot of stress, and maybe even for some of you, anger, because it feels so intangible to be able to take care of yourself, right? Um, because you are so in the throes of just like getting through one minute at a time with G tubes and blood draws and surgeries and um oxygen and all the things. Um and yet we know that we we do have to take care of ourselves because we need to keep showing up for our kid. And so we're actually doing a whole series on this. Um, and there's gonna be some great continued conversations with multiple guests. And today we have Miss Amy Lamb. And Amy, I got to connect with you through my uncle. I'm just gonna give a shout out right now. Thank you, Uncle Dan, for connecting us. We love you. Um, it's amazing just the network and how things come together. So, Amy, tell us a little bit about yourself. Um, you have an incredible story that has led to us connecting and this this uh podcast now. So tell us tell us who you are and what brought you to this conversation.

SPEAKER_03 3:23

Sure, absolutely. Emily, I am honored to be here. I am humbled to be here, and thank you for inviting me to join you today. Um, so a little bit about me, as you mentioned, um we had met through um through your uncle, who was my uh coach for a period of time, and um he helped me during a time when it was incredibly tough. My mom had been just on the beginning of a health journey. She started to lose strength. Um, and we, you know, multiple doctors' appointments, a lot of testing, no real conclusions. Um, and it was the latter part of 2020 um that she was diagnosed with an autoimmune disorder. And ultimately, for the better part of four years, she received a monthly intravenous treatment where, from an outsider's perspective, it things didn't seem to get better. They seemed to get worse. Um, and over that time, we tracked her symptoms, we tracked everything, what was going on, what was happening in life, what we were eating, uh, when the treatments were, what happened before and after them. And we really became the center post for all of the doctors who didn't necessarily talk to one another and who were across many different medical portals.

SPEAKER_01 4:57

Yes.

Misdiagnosis And Consequences

SPEAKER_03 4:58

And, you know, this, you know, this was going on sort of your life, right? On, you know, on top of having just changed roles, uh, changed jobs to a new company. And that was a particularly stressful period. And it kind of was like everything I could do to just put one foot in front of the other, to show up to work, to show up for my family, not to mention my husband, you know, and just try to make sense of it and and keep us going. And that really my health journal was born out of that. Very much mom's story, but very much self-preservation. You know, what was I, you know, what was I thankful for that day? What was my plan that day? Um, what was I not going to beat myself up about at the end of the day because it didn't get done. Um, and it really just was that simple, small tracking. It was as much for me as it ended up being as as much for mom. Um, and so you to kind of tie that into, you know, how we met your uncle Dan. He was, you know, he was my my work coach at this time, very much a work therapist. I almost felt like, um, but we talked a lot about perspective and persistence. And in hindsight, that that was everything. Uh, it was everything. Wow. And to be on the other side of of this, right? And that's not to say that the the journey is over. Mom is still very much um in a state of regaining strength, figuring out how to how to feel her best and manage and manage her symptoms. But it was only through um a transition of care that we ultimately learned that mom was misdiagnosed, misdiagnosed and treated for four years with a treatment where the very last year the side effects just became increasingly worse in rapid succession after the treatment. She had stroke, she had heart attack, heart failure within weeks, if not the same day, day of. Um, and so we were uh really frustrated and angry to learn of that diagnosis. I won't say that anger wasn't a part of it. It's a huge, it's a huge part of it. Of course it was. Um, but to also know that now that thing is can be put behind. Okay, how do we move forward? What do we need to do to move forward? Um, and that still comes with, you know, tracking how different foods affect the body. Um, how do different exercises and movements or lack thereof affect the body? Um, and it's, you know, it's not the same for everyone. Um, and so it's it's really just been so much of a learning experience. Um, you know, I'm not a doctor, I don't play one on TV, but if we've learned anything through this, it's that um we're an important part of the healthcare team. The voice, you know, your voice, you know, our voice mattered in that. And trying to pull together doctors to talk together, um, it really was with this transition team that uh that really helped do that to break down the silos. Um, so just you know, so many things, but had we not spoke up, had we not had the timeline, had we not told the story, I feel like we would have fallen into the same cycle of uncertainty. Um so so many things, you know, you just you learn when you feel like you can't put one foot in front of the other. Um, sometimes it's just putting one foot in front of the other, showing up. Exactly.

SPEAKER_01 8:47

Thank you for sharing with us, Amy. That's an amazing story. And first off, I want to acknowledge what you and your mom and your family have gone through is um it's indescribable. And yet many of us who are listening are nodding our heads going, we we not that we get it, we never understand each other's experiences fully, right? Never am I gonna say, Oh yeah, I understand. But um we've walked similar journeys. And when you mentioned the the various different medical um uh what was the word you used? Portal, different specialties, different portals, yes, all the all the communication or lack thereof, and and where we find ourselves needing to fill those gaps as the caregivers, um, it's an immense role. It's an immense role. And when you first begin in that role, you don't even know you have that role, right? You don't even know that you need to step into that role until you realize that that there's no one stepping into that. And so therefore it's you. Um, and so what I love, and it transitions beautifully, you sent me several copies of My Health Journal. So, in response to this journey with her mom, Amy wrote the My Health Journal. And um, if you could tell us a little bit about this and what you created it for, and then I'm really excited to share. Um, and I oh, and I was going to say um as a lead-in at the very beginning of this episode, and now we're several minutes in, but that's okay. Um, at the end, we will tell you how to get your very own free copy. Amy has so graciously donated copies for our listeners, and so we will share with you at the end of this episode how to get your very own copy. But Amy, can you tell us what you wrote this for? And um and and just tell us a little bit about it.

Becoming The Care Team’s Connector

Creating My Health Journal

SPEAKER_03 10:35

Yeah, a hundred percent. I mean, what we really learned from this is, and you said it well, Emily, you're you don't even know you're in that role, but you're at the center of it all. You're the only one who can tell your perspective, how you're feeling, what you're feeling, what you're doing, what you're eating. And sure, you can wear any health tracker you want: Apple Watch, Fitbit, Whoop Band, Oarring, all of it. Lots of great data, but sometimes that data has no context behind it. I ate this thing and I had a raging headache after it, right? That's that's not there. It just knows, hey, maybe my activity wasn't great that day. Um, so my health journal was really born out of, you know, in the times where we just couldn't figure out what was going on, or even in, you know, you know, on top of trying to figure out, you know, what was going on um mom-wise, my own personal just trying to put it all together and show up and do work and do the thing. Okay, what are the few simplest things that, you know, morning and night, I need to pay attention into? And really that's what my health journal was born out of. It's very simple, um, daily intentions uh and evening reflections. What am I grateful for? What's my plan for the day? How am I feeling? Because sometimes whatever is going on in life, what I ate, what I did, what I didn't do, you know, those things, you know, can weigh heavily on us, uh, both physically and mentally. And that affects how how we do show up. So it really, it really became that. Um I didn't want it to be overly complex. A few minutes a day, just to put one foot in front of the other, just to put things into perspective. And really, for us, when we did that with mom, and this was before my health journal existed, but it really became sort of the template for how we would create this thing, it it really, it really started to tell the story for us. So as we went to doctor's appointments, we could tell the timeline. Here's what happened when this happened, and then this, that, and the other. And I think you have you have a very similar story with your daughter. That timeline was everything, it was the story behind the data, the context. Um, and so that's really how my health journal came about. It's it's very simple, it's it's not high tech, it's a small thing to do morning and night, very easy to build the habit, doesn't take a million, you know, uh, you know, a ton of time to do. And then ultimately to to look back at it and to say, oh, that's right, this happened on that day. And not second guess ourselves about what happened when. Yes, yes.

Simple Daily Tracking That Works

SPEAKER_01 13:35

Um that happens too, right? Oh, yeah. And especially when you're in front of a doctor and you have 10 minutes total to, or maybe 20 if you're lucky, to really discuss very in-depth things. Um, it's very easy to say, oh, I've noticed blah, blah, blah, blah, blah. And then the doc asks more questions, and you start going, like, well, now I I don't know. Was that really after he did this or she did that? Um, so that that is brilliant. And I love so Amy sent me after she and I connected the first time, she sent me a few copies of her journal and I opened it up thinking, oh, this could be great for our parents to use to track their own kids and their their wellness. Um, because you know, we're constantly trying, and I've I've I've had the the wonderful pleasure of interacting with several different people who have created trackers for their kids and and their medical needs. But what's interesting, and of course, Amy, you created this thinking like as we're caring for our aging parents, but I opened it and I was surprised in the best of ways at how simple and beautiful it was, and how actually I thought, you know, well, this could be used as you're as you're following your child's needs, but more so, I think this is fantastic for our own needs as caregivers, as parents. And so that's when I reached out to you and said, can we do a podcast from that angle? Because I think that is so um perfect. And it actually, and if you listen to the last episode that just aired, you know that I am personally now in this space of really trying to figure out how to care for myself. I'm eight years into having a child with chronic needs. Um, if we are blessed enough for her to be with us, you know, for a very long time, I'm gonna be doing this for a very, very, very long time. So I got to figure out how to keep myself well. And I'll be honest, I'm not well. I am not well. And so this has been um, this was great when I opened it because you have daily intentions, what I'm grateful for. I love that because there's nothing like writing down what you're grateful for that puts things in perspective quickly before you then start thinking about what's wrong or what needs done or whatever. Um, and I love that it's it's literally two pages every day. You open it up, you write down, you know, what you're grateful for, how am I feeling? Did I get any rest? Like, here's a great example. I have a tendency, and I think many of our listeners do, to kind of beat ourselves up and be like, I don't understand what's my problem. Why don't I have any get up and go? I don't have any energy. But then I can look back at this journal and go, oh, that's because I haven't slept well in two weeks, because my kid keeps getting up every two hours with asthma and with vomiting and with whatever, fill in the blank, whatever you're dealing with. Um, and so that writing these things down can really help you get this is where I love the idea of self-care because it's not going to get our nails done. That's just not happening in this phase of life. If it is, good for you. I'm so proud of you, that's awesome. But for most of us, I always say self-care is peeing when you have to pee. Right? Like that is self-preservation when you're in the fight or flight mode. And so I love how simple this is. And it's just like, have I taken my own meds today? I am so guilty of making sure my daughter has all of her medications and have mine been taken. I probably take them 50% of the time. Unless I'm pregnant and then I take them all the time because it's not about me anymore. How crazy is that? But I think it's how a lot of us work, right? When it's about us, we forget. Um, or even just as simple as did I drink enough water today? Um, so I love this journal. I love that it's small, it can fit in any diaper bag or hospital bag or anything. Um, and it's just very simple. So you can use it for your child, you can use it for yourself. But something that you mentioned that I just really wanted to zero in on, Amy, is um this notion that we as the caregivers, we are a very important, if not the most important, part of our child's healthcare team. And in order to show up for that child, we have to take care of ourselves. And again, I'm not talking about going and getting a spa day. If you can do that, great. I'm talking about just the basic needs of our body, because we also have a body that needs maintained, right? Um, and so I love that this journal allows you, you can use it both ways for your child or for yourself. But for the sake of this conversation, um, I just love the simplicity of what you've created to be able to just take a few minutes to think about what you need that day.

SPEAKER_03 18:17

Emily, thank you. I just um, you know, and I think so, I think so many of us, you know, it's easy to put on the face that we are well, we've got it together. It's hard. It's even harder when you're caring for a loved one. And I can't even imagine, you know, caring for a child with uh with chronic illness uh or complex medical needs. It's it's scary, all of it. And you said it in the beginning. Nobody trained you for this role. Nobody even knew that it, you know, that it really was a role until you find yourself very much in it. And um, and you're right, you know, we have to take care of ourselves. We have to get those basic, those basic needs um to keep showing up, put one foot in front of the other. It's not gonna always look pretty. Most of the time it won't look pretty. But but it's it's being there. It's being there. It's being there. Absolutely.

Caregiver Wellness And Basics

SPEAKER_01 19:24

I remember when I was in the NICU with our daughter, um, one of the staff members who's amazing and was on our board when we first launched Parent Empowerment Network, um, because he's amazing. He pulled me aside and he said, you know, let us be the medical professionals. I know you don't have the medical training and you're not supposed to. Because I remember, like at the beginning, I think a lot of parents feel, oh, I need to know all the acronyms they're using and what these lab results mean, and what you know, all that stuff. And he was like, No, no, no, Emily, you don't, that's what we're here for. I need you to be mom. I need you to just show up, just keep coming, just be here. And in doing that, now I'm done quoting him and I'm inserting myself here. In doing that, we are able to do what you're saying, Amy, what you were able to do with your mom. Of we keep showing up as the caregiver, and what we witness and we observe of our child and their needs is the power we bring to the healthcare team. That's when we can say, like, for instance, I remember um, and this is a small example, I could give a thousand of them, but this is a very small one. Um, when we were in the NICU, I remember we were on a very rigid schedule for feeding. And but I was there every single day. And my daughter Charlotte would get so hungry at two hours, but we weren't supposed to feed till three hours. And so about three weeks into this, I was at my wit's end. On the days she didn't have to be NPO. I ended up saying, you know what? At rounds, I said, Okay, I appreciate you have this rule, but for as long as I'm here, I'm gonna feed her when she's hungry, unless you give me a good medical reason why I shouldn't. Um, and they were like, Okay, you know, but that's the kind of thing that you can be an advocate for your child because you're the one who keeps showing up, not because you're the medical team. You just are the one who's there and you know she's crying, not because of all the other conditions she has going on. She's just hungry. She's just a hungry kid, right? Um, or it can be much more extreme. Like I think I shared with you the story of Charlotte's um urology and gastroenterology challenges that took us years to diagnose. And one night we were admitted in the hospital for the umpteenth time, and I literally stayed up all night and tracked her symptoms through the night and wrote them on the wall because they had that whiteboard paint on the wall. So it was supposed to be for kids to have fun, but I used it so that the next day it rounds, I could be like, look at what happened at 2 a.m. and then at 2 10, and then at 2 15, and then at 3, and then, you know, and that is when stuff started happening, and the medical team transferred us. To a team that knew better how to handle it and all the things. And so um, but being able to keep showing up and and track for your child or for yourself what it is that is going on is is so powerful. So sorry, I kind of got in a tangent, but I got really excited because it works both ways for helping your child and helping yourself.

SPEAKER_03 22:22

Yeah, yeah. If if you weren't able to show up um to track that level of detail, which may have felt, you know, sort of you know crazy at the time. But I totally thought I would where the story started to unfold. Yeah, you know, and sometimes it's not this like huge aha discovery. It's sometimes it's that smallest little thing where it starts to unravel. And if we pass it by, you know, we lose it.

SPEAKER_01 22:55

Yes. And sometimes it's even, and and always, I think or 99% of the time, medical professionals are doing the best they can to help us the best they can, right? But sometimes, like in your case and even in my example there, it's just enough information to sh to determine is this the right healthcare team, or do we need to move somewhere else? Um, and sometimes that's the smallest thing. It's like I didn't crack the case, I didn't solve the problem, I did not diagnose my daughter, but I did discover that there was enough going on here that we're not in the right hospital system for what she needs. Exactly. Sounds like you did the same thing.

SPEAKER_03 23:36

Similar, yes. It it really was a matter of we told that timeline and that story to anybody and everybody who would listen. Um and that's you know, it I'll I'll never forget the look on the face of her current neurologist. It it was it is like it clicked for him. He knew he understood the questions that we had and our doubt, um, I hate to say our doubt, but our doubt resonated with him, which then led him to get additional team members involved and uh and testing involved to get more independent perspectives to your point to make sure are we are we with the right healthcare team? Are we really looking at the right thing?

SPEAKER_02 24:25

Yeah.

Advocacy Through Observation

SPEAKER_03 24:26

They told her right then and there when she had the uh the last round of testing, uh, you didn't have this, uh you don't have this, and you and you never had this. Hard pill to swallow. But to your, you know, you know, and this is this is not a dig at at the medical professionals or communities. That is an incredibly difficult job. Um, I don't, you know, profess to know what it's like to be in that, to show up for, you know, dealing with truly human life every single day. But I think that's what makes Parent Empowerment Network even more important is you are a part of the team. Your voice matters. Whatever you want, whether you're the the child, the parent, the caretaker, it you know, the voice, the story matters.

SPEAKER_01 25:22

Amy, we're so grateful for your time. We're so grateful for your heart for sharing your story with us, uh, your mom's story, and this amazing journal with us. I know you have a great website called herestomyhealth.com. So uh folks, we will put that in the show notes. We'll also put a link to Amy's book in the show notes, and we will add more details on how to access a free copy of my health journal for yourself. Um, Amy, is there anything else you want to say to leave with our audience before we close this out?

SPEAKER_03 25:55

I think the the biggest thing is use your voice. Um, it may seem like a small, silly, funny little thing that you took note of, um, but sometimes that's that's where it begins. And so whether you're, you know, you're taking note for yourself, you're taking note to for your loved one, um, don't um don't silence your voice. And Emily, you've uh you've done an amazing job telling the story with um with your daughter Charlotte. And it's just uh tremendous to to be here with you and to hear your story. Um and the the one thing that I've learned through this is that the more people you talk to, everybody's got a story. Um, whether it's you know them personally, a loved one, a parent, a child. Um, and there's so much power in the community. Um, so just amazing work, and thank you for that.

SPEAKER_01 26:52

Thank you, Amy. We are so grateful for you joining us today. Thank you for your encouragement. And um we're cheering you on in your work with uh Here's to My Health, and we can't wait to use my health journal. You are capable, you are equipped, and you are not alone. Together we can do hard things for our children.

SPEAKER_00 27:15

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SPEAKER_01 27:21

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SPEAKER_00 27:25

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SPEAKER_01 27:29

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