I was like, no, no, no, we can do this. Our lives can be normal again. We can get back to that place and do the things that brought you joy. But that was not to be. And it was only until I was at that point of letting that go, the life that we once knew, accepting our new reality that I could sort of build moving forward. Are you caring for others while working and trying to live your own life? Wondering how to find the time for your own health and happiness?

Well, you’re in the right place. The Happy Healthy Caregiver podcast, which is part of the Whole Care Network, is the show where real family caregivers share how to be happy and healthy while caring for others. Hello and welcome. I’m your host, Elizabeth Miller. I’m a fellow family caregiver, a care. Advocate, a professional speaker, author, certified caregiving consultant, and certified senior advisor. If this is your first time listening, thank you for being here. This is a show produced biweekly to help family caregivers integrate self-care and caregiving into their lives.

Each episode has an accompanying show notes page. If you’d like more detail about the topics, products, and resources. we speak about, or you want to see any of the related photos, you’ll find the show notes by going to the website, happyhealthy Caregiver. com, and underneath the podcast menu, click the image or episode number for today’s show. The link for the show notes will also be in your podcast platform’s episode description. Now, let’s get to it. Let’s jump into this episode. Hi there. Thanks for listening. Excited that you’re here.

Before we get into this caregiver Spotlight episode with Doctor Maggie Kang, I have a few things that I wanted to share with you on my own. First of all, I want you to know that I value supporting and educating family caregivers, and I do believe that this podcast is a great way to spread care advocacy, to spread caregiving, sustainable tips, self-care strategies that really work for caregivers. If you have Somebody, friend, family, co-worker that you feel like could benefit from this podcast, would love it if you just took a screenshot of it and shared it with them through an email or text, or maybe you could share it on your social media to help get the people who need access to the podcast have a direct connection and a recommendation from you.

Thank you so much for being a valued listener. I also want you to know that if you are a person who has a product or service, and you are trying To put your product and service in front of the caregiving community. The way that the podcast is made available is certainly free and complimentary for folks. However, there is a cost for doing podcasting, and how I offset those costs is sponsorships for each of the podcast shows and episodes. If you have a product or service and would love to put it out into the caregiver community, who are more than caregivers, by the way, would love to chat with you about what a podcast sponsorship could look like.

For you. Speaking of sponsorships, I want to thank this episode sponsor, Rare Patient Voice. Did you know that you can earn cash in exchange for sharing your opinion? Well, Rare Patient Voice or RPV helps connect researchers with patients and family caregivers for over 2100 diseases and conditions. RPV provides the opportunity to voice your opinion, to improve medical products and services while earning cash rewards. If you’re interested in just being a part of Database and having them reach out to you about potential opportunities, you can join the RPV panel by going to rarepatientvoice.

com/happyhealthy Caregiver. I want to share a book that I recently read that I think that many of you may enjoy. It’s called The Correspondent by Virginia Evans. For people like me who have found healing through writing and reading, and you’re going to hear about that with Dr. Maggie Kang as well. You are going to potentially like this book because Sybil Van Antwerp uses letter writing, email writing to make sense of her world. She writes to family members, friends, authors, customer service people, um, and she will write back to people who write to her.

She’s writing to one mystery person throughout the book, and she really never sends the letters. Reading or listening to a book of letters just is a great Passage of time for me. I, they are short, quick chapters, which I adore, and there are lots of messages in this novel about grief and not just the dying kind of grief, but grief and forgiveness and self-forgiveness, love, aging. I think it could certainly make for an interesting book club discussion, and there’s lots of self-reflection that’s happening as I’m listening.

It makes you want to go out and buy some pretty stationery. And bring back the lost art of letter writing, because honestly, is there anything better than getting a handwritten piece of mail in your, in your snail mail box? It lifts the spirit, it lets people know that you’re thinking of them, and it really acts too as a historical document for later years to discover. I gave this 03 out of 20 stars. Again, it’s the correspondent by Virginia Evans, and I’ll link to it so you can check it out if you’d like.

My favorite thing, things I think plural. That I want to share with you in this episode. I’m not really particular about brands of clothing, unless it comes down to my underwear, my sports bra, and my cooling pajamas. I adore all of the options that Soma Intimates offers for these. Don’t worry, I’m not gonna show you my panties or anything, but I can tell you that they always run deals on them like $2100 for $217 and I stock up on the cotton hipsters and the briefs. That’s what I wear.

Nothing glamorous and sexy about those, but certainly comfortable. The other thing that I adore as a post-menopausal woman is cooling pajamas. And so these are size large. This is the Soma short sleeve sleep shirt. This is one of the many sleep shirts that I, that I have. My husband is not a huge fan of these, because if they’re not, again, in the sexy category, but for me, sleep is so Critical that I’m comfortable, and that I get good sleep at, at night, especially in this stage of life that I’m in.

And so I am not messing around when it comes to sleep attire. This is what I, I reach for is the, the Soma pajamas, and they do make sets in two pieces and different ones in the, in the cooling variety. And then the sports bra is beautiful. First of all, this is what they look like, and they are padded, they always like look great with under a t-shirt. So it’s called the. Soma sport yoga bra, and I think in this one, I wear an XL. I do.

So it’s sleek, supportive, and comfortable. If you haven’t been in a Soma store lately or shopped online there, you might be missing out. I wanted to share with you just my passion for Soma, and maybe there’s some stuff there that you would like to explore. Let’s meet today’s caregiver in the spotlight. As the navigator for her daughter Nell’s rare disease, and a Yale-trained physician, Doctor Maggie Kang uses her personal and professional training to guide other parents through the healthcare system, helping them to turn health challenges into leadership.

She’s a passionate advocate, a TEDx speaker, and a contributor to HuffPost and Psychology Today. In this specific episode, we explore how caregivers can reclaim agency for themselves and for their loved ones, how they can move beyond cycles of suffering or self-comfort. And she talks about her own experiences in this, and how caregivers can take meaningful action, especially within the rare disease community. We also discussed the grief that accompanies losing our pre-caregiving life and how to intentionally create a vibrant, empowered new normal. You’re also going to learn why fresh parsley is part of Doctor Maggie Kane’s self-care array of tools.

I hope that you enjoyed the show. Hi, Maggie. Welcome to the Happy Healthy Caregiver podcast. Thank you. Thank you for having me. I’m excited. I’m excited to chat with you and, and get to know you a little bit better. We always kick off the show with some thoughts and inspiration from the Happy, Healthy Caregiver jar. I would love to get your, your thoughts, your personal thoughts on this and see how it applies to your life now or back then. It says, ships don’t sink because of the water around them.

Don’t let what’s happening around you get inside. you and weigh you down. So ships don’t sink because of the water around them. Don’t let what’s happening around you get inside you and weigh you down. I feel like I have this amazing image of me grabbing oars and and recognizing my agency in the waters that I am in, because there’s always a way to Respond and to travel through waters that are turbulent or in the middle of the midst of a storm. And these are things that we can never control.

And I guess it’s somewhat conjures up the image of also like the sailboat and sort of adjusting the sails to navigate whatever storm you happen to be in or whatever type of water you happen to be in. So for me, it’s focusing on agency as you sit in the boat. Yeah. I love that word agency. It was kind of a, I didn’t, I didn’t really understand what it meant, right? That we, we always call the area, um, Agencies on aging. And it’s like, how do you describe agency for people who are like, what is that?

Right? I think just going back to the bone analogies, it’s recognizing that you are not necessarily the victim of the waters of the sport, but that you actually can respond and navigate and find your way out and travel through those waters. It’s an empowering word, I feel like agency. Yeah. I think it really pulls you out of that sort of victim mindset, like that things can happen to you and you have no control over that. There’s a lot of things for sure that are out of our control as caregivers, and yet there’s a lot I think that we can do to take action.

And the same with the area agencies on aging, that is about older adults having agency, older people have choice to what actions can they take to to further live independently and and age in place. And so a lot of the services there. Um, yeah, I love that word. I think that it’s, we need to, we need to talk more, more about that. Um, well, for those that don’t know you, share with us your personal caregiving journey with your, with your daughter Nell and, and how you just found yourself to be one of the 63 million family caregivers currently in the US. Yeah, so primarily now, I am the caregiver to my daughter, and so she was diagnosed with a rare neuroimmune disease called neuromyelitis optica spectrum disease.

It’s also referred to as NMOSD. It’s rare, and actually most doctors haven’t actually heard of it. So I suspect that many of your audience members haven’t. So I’ll just give you a little background. What I try to describe it as, is sort of like in the family of demyelinating diseases, and a close cousin might be like in a multiple sclerosis, even though it’s really not the same disease, very different sort of pathologies, but it Basically, historically used to either result in death, blindness, or paralysis because it can impact your optic nerves, your spinal cord, and, and your brain.

So, I mean, really, we have been scary. Oh my gosh, so scary. And I was somewhat familiar with this diagnosis when I was training as a radiologist, so I’m also a physician. And when we got the diagnosis that my daughter had, it, it didn’t make any kind of sense. Because it’s typically or historically more of like the middle aged woman’s diagnosis. And my daughter didn’t present with the blindness. She presented in much more non-specific ways because her disease affected the brain stem, so like that lower part of your brain.

And so her swallowing mechanism, her tongue, everything was paralyzed and it caused right upper extremity paralysis. She had also a lot of dizziness and nausea because those are like The centers in your brain stem that impact those symptoms. So it was a whole sort of constellation of findings that landed her in the ICU. She had aspiration pneumonia. We weren’t sure if she was going to recover. She did. She survived. She was discharged in a wheelchair. So I will tell you that is in stark contrast to the person that she was prior to this disease, which really came overnight.

So she was this robust. Sleet and never sick, never miss a day of school. I mean, it was so sort of jarring really to see ICU. So, when she was discharged, I thought we, our lives obviously did not look at all like the way it used to or the way that I wanted. And we were really very much at a loss as to what to expect for the future. Would she be able to go back to school? She couldn’t write, she couldn’t move her right hand. She couldn’t really walk on her own.

She was in a wheelchair. So what is this going to look like for our future? And that was kind of where our journey began. And she didn’t really go back to full-time school until like 2.5 years later, which, by the way, also coincided with the pandemic, which really just sort of elevated the challenge of our sphere. How old was she when she was diagnosed? Uh, so she was 9, she’s in 4th grade. OK. And she’s 17 now and actually she has made a remarkable recovery and we’re extraordinarily lucky that she was that incurable though, right?

Correct. But there have been FDA approved drugs within, you know, the last several years that sort of are there like it’s, it holds the inflammation at bay. And so we would Reduce the likelihood of relapses because that was the disease. Like this is the disease where you were always worried, when is it going to come back? And this time, is it going to leave me more disabled? Am I going to die? Am I going to be blind? I mean, it was just an incredible amount of uncertainty that patients had lived with.

So we were extraordinarily lucky to be diagnosed at a time when there was A few FDA approved options to treat. Do you think your, your professional experience as a physician kind of leveled you up as a caregiver in any way? Yes, I actually think so. I mean, I, I think that part of that answer is also that you also know the horrors of what could be and your mind being that way. I would say, for the most part, I was so grateful to have medical knowledge to be even specifically a radiologist because A lot of her diagnosis came from imaging.

It didn’t come from labs, but eventually also the confirmation came from a spinal tap, you know, the lumbar puncture where they take the fluid. So it was horrifying. I mean, I talk about that in my TEDx talk because everything up till then was very sort of, you know, not revealing. We, nobody knew what was causing her problems. And when I saw the MRI for the first time in the middle of the night myself, it was, I think, a moment of just terror. And it’s sort of still a PTSD for me because if she has to do a follow-up MRI, I always get so sort of scared and stressed about looking at her images, even though I know it should be fine because she’s clinically fine, but the memory of what I saw that day was just horrifying.

Radiy was you said was your area of expertise as a physician. Yeah, I can imagine. And then, yeah, like I don’t, we in Atlanta, we have Wellstar in MyChart and maybe there’s My chart in other areas or a lot of times those labs and those things come through and it’s like, hey, don’t worry yet, you know, we’re going to get back to you about reviewing this with the doctor, and I’m like, I don’t, why can’t they like hold it before they just push? I don’t know. There’s a lot of PTSD and anxiety, I think, over, over some of those things.

I’m sure you had to really advocate, um, first of all, for those that don’t know what a rare disease is, like how do you define a rare disease? Yeah, it’s like 1 in 1003,000. Under 200,000 diagnosis. Yeah, and then that’s rare, and then there’s ultra rare. We’re You’re just rare, not ultra rare. Yeah, there, there is actually a distinction, as there should be, because I think the ultra rare category, as you might say, it’s like a handful of people globally that have this disease. So then they might graduate as they find more of them into a rare disease category potentially.

Have you been able to find your community that Yes. Yeah, that’s like, I’m so glad you asked that because I really think that that is one of the very few first things I share with people who are encountering encoun I’m sorry, encountering this for the first time. And what’s interesting is that my daughter, after she was diagnosed, she didn’t have any books or anybody to turn to because There was nothing really, so she decided to write the book that she needed to read. And so when she did that, it was covered on the CBS Evening News and a foundation specific to our disease, her name is Sumara, and the foundation is called the Sumara Foundation, and it used to be called for NMOSD and MOMMMG, but now it’s for all neuro.

Immune diseases. Anyway, that is all to say that that is how she found us and we connected with that foundation that really changed everything because all of a sudden, we were not alone. And I do think isolation, loneliness, anxiety are features, very common features of the caregiving journey. And the connection to a community is life changing. Yeah, I do think so. I think sometimes people, I think it’s twofold, right? Like we need it. We need the support as caregivers, and then we can also offer it to other people.

Like wouldn’t it, it feels amazing to be able to help somebody else, um, and validates a little bit of like, why me? Why are we going through, through all of this? Do you feel like when Nels had a diagnosis that there was kind of a grief journey for you, or how, how did you cope with it? OK, not well. So that’s honest. I love the honesty. Yeah, I mean, oh my gosh, the caregiving journey, the grief experience is messy, messy, messy, and that’s totally fine. So he, I think initially, the experience came as such a shock that as I usually respond to things that are shocking, I deny it.

I’m like, no, no, this is not, there’s got to be something else. He didn’t consider everything. But so that denial was, I think, a way for me. To not accept it. And I think the grief of having my daughter be so active. We had just come back from a ski trip. She was on the swim team. She was doing travel competitive lacrosse, and to see her now in the ICU with all of those dreams, probably unlikely to happen again, was a grief that really felt heavy to me and I just hard for me to accept.

So for, you know, the better part of like a year, I know it sounds like a long time, I was in my head. I was somewhat like trying to get our lives back to that place. I was like, no, no, no, we can do this. Our lives can be normal again. We can get back to that place and do the things that brought you joy. But that was not to be. And it was only until I was at that point of letting that go, the life that we once knew, accepting our new reality that I could sort of build moving forward.

And that was a very sort of crucial turning point in my experience, but I held on. Onto the grief, the anger, and sort of the denial were very real features of my initial experience. I think there does come this point when in people’s journey and as a certified caregiving consultant, like we learned about the seven stages of caregiving and Or 7 types of caregivers and you know, going from expecting to overwhelmed or entrenched. And then there is a, I think, a point hopefully that we get to where we, we pivot and we feel we are more of a pragmatic caregiver where we’re thinking like, it’s an acceptance, the line that happens.

It’s like, OK, this is, this is my life, this is what’s happening or this is my season right now, and it’s out of my control. So what am I going to do to really make it Make it OK and make it, make it work for our family. What did some of those early things look like? Like after you kind of got to that point where you’re thinking, OK, there’s no going back. We’ve got to, we’ve got to forge our new way forward. What did that start to look like?

Well, so, as I mentioned before, a lot of our sort of challenging moments peaked and culminated with the pandemic. So, because I was in isolation at home and like seeing all of this sort of trauma that has transpired in our lives day after day. I feel like I sunk into some kind of like anxiety, depression, and I wasn’t doing well. So, one day, I, I was not on social media at all up until this time, and so I got on because, you know, it was a pandemic who’s not on social at the time, or the computer is really the only way you can relate to the outside world, it seemed.

So, I was on this like Facebook group, and there were a lot of physicians and moms and everyone was talking about coaching, and so, I actually ended up hiring one and I learned a lot about those coaching tools, which really, really transformed my whole experience. And that was what helped me to pivot in, in recognizing that I had an agency. That was the first time that I realized it because I think all the way up to that time, I thought, this terrible thing has happened to us.

Why us? Why me? What did I do wrong? How did I miss this disease? Like, I’m her mom, I’m her physician, like a physician, and I should have picked this up. Like this should have been avoidable. I, those types of things were going through my head and obviously those things get me nowhere good. I was just sort of sinking into a depression that I did, I wasn’t aware of. But thankfully, I met people who kind of understood my plight and helped me to understand these coaching tools that transformed our lives.

So I feel like I referenced one or actually a couple of them in my TEDx talk, but I think one of the things that I started to become aware of was that because I saw our situation as all bad and this, maybe I was being punished for something, I wasn’t able to see all of like The great moments in our lives. And once I could sort of open myself up to that, I could hear my daughter laughing for the first time. I mean, and she started to actually eat solid foods for the first time.

She was interacting with her brother, who she hadn’t seen in so long while she was in the hospital, and these are all micro moments that I had observed, but I wouldn’t have been able to notice it had I not been open to the possibility. That they exist. So, I feel like one of the things about coaching is it just opens your mind up to possibility that life is not black and white, good, bad, you know, I think I was in that sort of black and white binary state of mind.

And that really just led me into a lot of, yeah, feeling anxious and depressed. Yeah, I, I appreciate you saying that and kind of walking through what that looked like and I’m glad that you, you know, had this little intuition to go online and seek support. Was the coaching, is it a certain kind of coaching? Is it specifically for caregivers? Is it a certain kind of company so that I can share with it in the link in the show notes? It’s not specific to caregiving. It’s actually just like general life. Coaching.

But what I’ve come to understand is that those tools or the principles of life coaching are broadly applicable to like any aspect of your life because it really is about recognizing your agency and being intentional about what you want to create in your life. Yes, I love the word intentional. Yes, yes. And I think that I really focused on that intention when I was home during the pandemic because That was really all that was available to me, my mind. And I actually ended up doing these funny little things even in the kitchen because I, I’m in the kitchen all the time, and I’m always preparing special foods for now, like, we started focusing on paleo, autoimmune, anti-inflammatory foods and things.

So every time my mind would sort of like spiral, and I would get to that dark place, I would have like these, like quotes, like on the windows, like I wrote, wrote them on paint pens and I have this like French door in the backyard and each of those squares had like a little drawing and like words of encouragement, and my daughter and I did it together. So whenever I felt like my mind was going to a place that wasn’t helpful, I would just sort of like, look to the left, look to the right, and my eyeballs would sort of focus on one of those quotes, and I could sort of, sort of retrain my mind in the way like you might go to a gym, right?

You want to like strengthen those muscles. So Once I started to practice that, I could sort of catch myself and it was really, really helpful. And you know what else I did? I also, because she had such a terrible looking MRI brain, I printed out a normal MRI brain and I put it on my refrigerator and I was like, this is what we’re going to look like, like a law of attraction thing. Yes, something like that, like a manifestation thing. I mean, whatever, I, I was just going to do whatever I felt like made me happier or able to be the mom that I wanted to be for now.

So, I mean, I don’t know, you could fight all day and night about the truth or the scientific reality of whether or not those things actually exist. But to me, I didn’t care. Whatever is going to make me feel better and help me get past this horrible moment is the thing I’m going to do. Yeah, I You know what is great about what you’re sharing too is like it’s not like one thing. It was, it was a lot of layers of stuff that was happening. And I don’t know if you feel this way, but I’m wondering too, like, you know, the pandemic was a nightmare in many, many ways, and yet two things can be true at the same time.

So did it also give you the space really To slow down and kind of heal and, and put some intention on you and on your daughter and your family. Yes, and I, and I totally agree with you. Two things can be true at the same time. So, yes, the pandemic was challenging in some ways, but on the flip side, yes, it was so valuable. valuable to be under the same roof with my husband, my daughter, my son, because normally our lives were really quite frenetic. Like we were going to sports tournaments and practices.

We were basically living like a split life. My husband was with Jake, I was with Nell, and we hardly connected even for dinner. So yes, It was a gift in the pandemic that we could be together and nobody was rushing off to do something and we could be calm and actually talk to one another. It was valuable. Plus, I was able to share with them all of like the coaching tools that I had been learning, and that I think has also been transformative for all of us.

Amazing, yeah. To, to kind of have that space for that. What is, what does life look like now for you all? Like, what is your new normal now? Well, it’s so funny you asked. My daughter is right now getting her infusion. So we have a home health nurse. Thank God we found him, because, we would be traveling to Washington DC from Northern Virginia to be getting our infusions, which I could tell you, It’s, it’s awful. It’s so stressful just actually going there and parking and figuring out.

I mean, a home environment. Life changing. When somebody mentioned that to me, I thought, what? Yes, we’re in for that. But how do, how do people, I mean, is that available for most people who get infusions on things? I think it depends on the type of infusion and the initial stages. You do have to go to a center, if not the hospital, because they need to see how you react. Like, are you going to develop an allergy to it? What is like the rate of infusion that is appropriate.

But um generally speaking, I, I think a lot of things can be done at home, and it’s, it’s so wonderful when you find the right nurse because Nell has tiny, tiny veins and she’s such a difficult access. that when we found a nurse that was patient and skillful and she loved him and trusted him, that was game changing. So we don’t actually do infusions unless he can do it, and we’ll like change our lives just to make sure he can come by. Sometimes the consistency is so important, especially like I have a brother that I care for, who’s neurodivergent.

Every time I try to call a provider, they’re trying to like get me in with somebody else. And I’m like, No, we need consistency. He has, he has a disability, you know, he’s autistic and consistency, I think is, it gives, especially young people and people who are near divergent, gives them something to expect without the constant change of things. So I, I appreciate those little, those little, what is the rest of your New normal look like? Yes. Well, she has actually made remarkable progress. I mean, recovery, if not, like, I think for people who observe her, you don’t know that she has a rare disease.

I mean, I noticed in like the slight things because, you know, common to all autoimmune diseases, fatigue is probably the thing that most people struggle with. And then, of Of course, the pain of neurological disease with like tingling or numbness or actual pain can be challenging. And so for her, a lot of what happens when she is tired is like it sort of unmasks everything that she had previously. So she might sort of speak differently, like it may be slightly slurred. She may not be able to focus as well.

And even some of her like swallowing mechanism can be disrupted. So she’ll have to like slow down when she eats. So, I think those are all sort of little things that I noticed, but most people don’t see it. And in her day to day experience, I think fatigue is still the greatest challenge. And from a logistical perspective, she’s on two monthly medications, so we do have to sort of You know, call, make sure we get it shipped on time. I have to schedule the home health nurse and set her whole, whole situation up, which is really funny.

She’s in the living room. We call it our IVIG room cause that’s the medication she’s getting infused on. And I just have to set up the whole thing. Like I have a little cart. It’s like a medic medicine cart, and I set up like the couch or the pillows, so he can access her veins. So, this is like a whole big production every month for that one day. And typically, if she’s in school, she’ll like zoom in and try to keep up with classes there. In terms of other things, we’re not in competitive sports anymore, but she has pivoted to reading, I mean, writing, reading always and art.

So that’s been a shift that she has done. For me, I’ve also shifted my career where now she and I both are ambassadors to the Semeyer Foundation, and we both do a lot of work in rare disease advocacy. So we’re at Rare Disease Week every year on Capitol Hill, and we do a lot of work with the Every Life Foundation for Rare Diseases. So our lives look very different, but it’s not that it’s not worse, it’s not less than what we had before. It is different in some ways, better, because I’ve found like the one thing I think might be true, I think for humans, is that we all need human connection and the depth and the auto.

The intensity of that connection is very enriching and rewarding. And for my kid who’s like such a social animal, when she is with people who she feels she can help or can learn from or deeply connect with, it is very, yeah, sort of enriching to her life. And so she finds all those people in the rare community. I mean, as you probably know, in the caregiving world, Like people who do this work are really incredible. I mean, the amount of love and the dedication and the challenge of all of caregiving, it’s inspiring to be with people who have a similar journey.

Yeah, what, well said. I mean, I’ve not met a caregiver I didn’t like, by the way. So there’s definitely a special community out there. Once you, once you tap into it, and it does take some intention to tap into it. And good for you and your daughter. I mean, how proud you must be of both of you all to take this situation that was not on your bucket list and, and massage it and tweak it and pivot and into ways that are working for both of you as far as like new hobbies, new professions, new advocacy work.

What, what are some of the goals like with Rare Disease Week and Day coming up, like what are some of the goals and things that you want people to be aware of about that? What are some of the messaging? Around that. Sure. Well, I mean, some of the goals, specific in terms of legislation is that we are always advocating for the priority review voucher, which incentivizes pharmaceutical companies to look for drug therapies for pediatric rare diseases. So that’s one. The other is like newborn screening, you know, why not?

All this, all different states have different newborn screening options. Like you can just decide what you want to put on your sort of menu of newborn screening. To be available in your state was this something that could have been identified on Nell’s newborn screening? No, OK, we don’t have one. Yeah, we’re not one of those. Her, her disease, I don’t even know necessarily what caused it. It’s not. You know, it’s not been identified on a chromosome or a gene. Um, yeah, I’m not actually sure. And that is probably the case with a lot of these autoimmune diseases.

Some people could be a trigger to a, to a virus perhaps you had at some point. I don’t know. But, so, those two bills and legislations are things that we have advocated for in the past, but other things, generally speaking, Telehealth is so important. Like, we live in Virginia and it’s not that far from Washington DC but For us to actually travel every time to see a doctor, I mean, at one point we were seeing neurology, immunology, pulmonology, enterology, and for us to travel every time to do that, and it could be even just for a follow-up.

So the person doesn’t, the doctor wouldn’t even need to Evaluate her or, I mean, you know, do a physical they’re just, hey, come back in 3 months and you’re like, no, I’ve got this whole slew of doctors that um yeah. And it’s like to follow up, they’re like, oh, well, how are you doing on your meds? What’s your symptoms lately? That’s it. And you had to take a half day off work or school or, yes. So that all of that, I think is too much. But we are still relatively close to our doctors.

I mean, you know, Northern Virginia, and DC. There’s some people where you literally can’t travel the distance to get to that specialist. And for rare diseases, the specialist could be very few and far between. So I think telehealth is extremely important, and we really need to keep fighting for that. Yeah, good. I mean, for sure, particularly for people like you said, are in rural communities and Can’t, don’t have the option to take off work and have people covered. I mean, I’m an entrepreneur, so when I’m not working, I’m not, I’m making a living.

So there’s a lot, a lot there. I, so I appreciate you emphasizing that, and we’ll link to some of the rare disease initiatives and bills that you’d spoken about. So I know with your advocacy work, Maggie, you are a speaker, have done a TEDx and also a writer, you know, what are some of the topics that you speak in Write about that are really important to you. Yes, I, OK, well, since you mentioned the TEDx, I can start with that. So I decided to get up on the TEDx page in 2021, just like three years after Nell’s diagnosis, which is kind of insane because I will tell you, I’m not a public speaker.

I never was, and I’m very scared being in front of people. But for some reason, I just felt the need to share this message. And the message was this, that pain. It is inevitable and suffering is optional. So, talk more about that. Pain, pain is inevitable, suffering is optional. OK. Yeah. So, I think like pain and grief and a lot of those emotions that we talked about are actually part of our human experience because we all will experience, you know, disappointment, loss, or sickness or something. In our lives, but, and feeling pain and sadness in response to that, I think is completely human experience.

What we sometimes do as humans and I think are different from other animals, is that we assign meaning to whatever thing that has happened in our lives, that circumstance, and when we assign a meaning that doesn’t make us feel good or worsens our overall experience, that’s the suffering, and that’s what’s optional. So for me, The suffering that I laid on was that this is all my fault. Like, what? Yeah, how did I miss this? Like, I should have been able to see her. I’m a physician. I’m her mom.

Like, why didn’t I pick this up sooner? All of that. So that was the suffering and the guilt that I think I created in myself that sort of kept me stuck in anxiety. and depression for that, I think, 1 year, to be fair, have been longer. But once, and I think we had talked about this briefly too, it’s just like this idea of acceptance to that point of acceptance and realize that my thoughts don’t happen to me. I can choose them, choose to believe that now, yes, the fact is Nell has a disease.

I can choose to believe that this is not my fault, but I could choose to believe that here’s this opportunity for me to care for her in a way that I want to, and what, where, where will this take us? How do we want to intentionally rebuild our lives? That was sort of what got me out of that stuck phase, and I think that being stuck is very much due to the suffering or the thought that we Um, the meaning that we assign to that circumstance. Is that clear?

I think it’s, I mean, it’s very well said. First of all, I think all of the emotions are valid, right? And, and to feel them, it’s when we get stuck in them and we just are in the spin cycle over and over again. And I, I take kind of what you are saying about pain, and I say that similar stuff about worry is worry is not very productive and It’s not productive. It’s, it’s a natural thing that we are concerned and worry about people, but there is some kind of like a thing that needs to kind of pop off and say, OK, well, what can I do to dissipate the suffering or diffuse the worry?

And typically for the worry part, you know, it’s taking some kind of an action. Like, what can you do to make steps to help? And it could be something simple. Like I posted a video recently. I had a friend who went through I was going Through a cancer journey and there’s not a whole lot we can all do about it. But we decided as a friend group, we were going to wear pearls. And so pearl earrings or pearl necklaces as a way to kind of just positively like, OK, we’re putting some energy into, so when I see my pearls, I think about her and you know kind of lift that up.

So, but I think those kinds of things are important and the feelings are valid. You’re going to feel guilty, you’re going to feel worry, you’re going to feel pain. You’re going to, you know, you might even start leaning towards, you know, going down. But if you’re stuck in that stuff for too long, it’s really, really unhealthy for us. Yeah, and I’m so glad you said that because, yeah, absolutely. I think all emotions, like, as humans, we, we experience the range of emotions, but I think it’s a thing where we sort of, yeah, create a situation where we get stuck.

And I think one of the other ways I was able to sort of Move myself out of that was, I think, just in the recognition that how I was with myself directly impacted my daughter. And that’s absolutely the thing that I didn’t want to do. I wanted to be the best caregiver to her, but I realized that in order for me to do that, I needed to sort of be better myself. Yeah. It’s not fake. You were doing it in an authentic way of saying like, she’s watching, she’s learning from me.

You know, they learn all this stuff, right? The good, mad. And so you’re teaching her that life knocks us down sometimes and you know, we pick ourselves up and we make the best of it. We move forward, we make it better in many ways. 0, 100%. And and I feel like also, she and I, we were like pretty similar in a lot of ways. We’re very close and I didn’t know in like in the, in sort of the immediate ways that when I took care of myself, I noticed the changes in her, like specifically sleeping better, eating better, and just My general outlook, like she could see it in my face.

She can feel my energy when I walk into a room. And when I’m near her, she felt more at ease with herself than I was. And that was when I realized, and I know like, in one of your most recent podcasts, you, I think you were talking about how it’s like a fifty-fifty thing where you have to like give yourself and the Nancy. Yeah. And I feel like I’ve always thought about the caregiver and the patient as like a single unit. And I know that pre, you know, prior to this whole experience, I thought, I’m the giver, like my kid receives everything.

I take care of my kid. I sacrifice my sleep, my time, everything is for her. And I realized over time that that’s actually not the case, because she’s so much sort of feeds off me and I feel like the way I see us now is that we’re a unit. And so when I take care of myself, I’m actually taking care of her. And so I think in thinking of it that way, you don’t feel like if I take care of myself, then I’m giving less care to her, you know, and there’s not, if I take time to go take a walk, I’m not there for her.

And she can’t take a walk, so I’m going to feel guilty about that. I’m sort of like over that way of thinking. I feel like she wants me to take care of myself because if I look stressed, she feels stressed. That this is like a long term partnership and it is the only way I think it can be sustainable. Yes, yes, yes, yes. 100% to all of that because we do have to kind of get to that part though. And as human beings, like we deserve care, period.

Yet it’s really a struggle when you’re in Day to day long term caregiving situation, you coming back from your walk with this kind of like aura of a glow, like you’re bringing this positive energy in the thing and she is feeding off of that. And when she’s a grown adult who’s managing a lot of competing priorities, you’ve taught her how to to infuse some of that into her own life, her own health and happiness. You talked to, I know about I love how you make the distinction between the words to like the pain and the suffering.

And here’s another one you make a distinction of is between self-care and self-comfort. How do you, do you define those? Yeah, oh, thanks for bringing that up. So I wrote about it all in a Psychology Today article, like, in much greater depth, but I will tell you the link to the articles too, yeah. Thank you. So, the main difference is that Uh, self-care and self-comfort, are not the same thing, and I think a lot of times we, we tend to conflate them. So, self-comfort is more of like the short-term soothing.

Let’s say you just feel very stressed, you’re gonna go out to a bar to meet your friends and get a drink. It’s gonna be so fun. But then you, you find you get there, and you just wanna take another drink, and you just start eating food, and somehow this becomes like your coping mechanism. It’s fine, if that is like the thing that you need in the moment, but to recognize this is short term, And it’s actually somewhat of avoidance, but that’s OK. Sometimes you need to avoid it, and it’s more of like a short term benefit.

The self-care is actually more of a long term sort of investment in your being. And why that is actually harder, it may not be the thing that you reach for all the time is because it is actually confronting the experience of what’s happening, actually feeling the grief and just sort of accepting that this is sad and The loss of the thing before and sort of thinking about how you want to be and move forward. That’s like much more difficult, but self-comfort is that, and that could be walking, be sitting in a bath, just thinking and being with your thoughts.

It could be journaling. So the way you know the difference is how you feel after. Do you feel rejuvenated, energized, or do you feel like, oh, you just put like a little band-aid on your situation? And but that’s OK if that’s what you needed at that time. But to know that that’s not an investment in your overall well-being. Yeah, I think you’re speaking to me directly right now because I’m, I’m in this mindset with my brother right now of, he’s a lot of work for me, you know, with my parents being deceased, our siblings sharing the care, he’s getting ready to move into a community.

He’s got explosive behavior, like a lot of things. And so I’ve had to kind of re-examine my closet of self-care tools and say, because I’ve been You know, doing the massage, doing the workouts, doing the stuff. And I’m like, I’m not really feeling better, to your point. And so it’s like, what’s in here that’s going to make me feel better when I look at my closet of my self-care tools. And it is going back to the things like meditation is making me feel better, um, that talk therapy is making me feel better, and also writing is in the back of my mind, like thinking, Oh, that writing really made me feel better when I was kind of going through this.

How do you process it and things like that. I think it’s a great question to ask yourself, like, how do you feel after doing this activity? Because you can be checking off all the things and you know, like, I’m doing it, I’m doing self-care, you know, but, but is it self-com, really? So it’s, and it’s OK to have both, I think, to your point, as long as back to the earlier conversations, like we’re not getting stuck kind of in this spin cycle of too much self-comfort, not enough self-care. Yes.

So, so, sorry, go ahead. I am just to kind of be aware that that’s what you’re doing, cause sometimes I’ll be, I’ll sit in front of my TV and just turn on Netflix, a show, and my daughter will come in and I was late. I’m like, Yeah, I know. I go, I’m doing self comfort. I know it. It’s fine. I just need this for one hour and we’ll laugh about it. I’m going to start saying that. I’ve been playing some silly game on my phone. It just kind of like makes me, it does make me feel a little calmer, right?

Like it’s like, or I’m needlepointing and that makes me feel calmer. Like I’m just kind of breathing, getting regulated my breathing, but it is self-coming. I’m not really addressing the The feelings and the, and the things that are going on. So, so good. So, how do, how do we feel after doing this? Well, what does your self-care look like? Your self-care is your self comfort, Maggie, what does it look like for you? So interesting about, so the self care, you mentioned meditation. So I found meditation is very challenging for me.

It is challenging. It’s challenging for me. So instead of sort of forcing myself into a regimen that I may not fully be ready to embrace. I try to co op moments in my day where I can create meditation. Like, I love the smell of parsley, and so when I’m chopping parsley for food, like I’ll do it slowly and fully just smell the fragrance and enjoy that moment that I, yes, I just love that. Curly parsley, Italian parsley. Does it matter? Any of it, if it’s fresh and it smells awesome, that’s what I take.

So, I, it’s like, so Nell’s a real chef, so I’m like, oh, I’ll be your sous chef. I’m just gonna like chop this. This makes me feel so good. It says that there’s something about the rhythm of that and then the smell that makes me feel At ease. And so, and I, I do feel like that is self-care because I feel better afterwards. I feel calmer and I know that as I’m doing it, I’m like thinking about the things and trying to make intentional decisions about how I feel in that moment.

Self-comfort, I think I already talked about is Netflix. That was my go to, like, if life got crazy and I just needed To just sort of space out or to have my mind go somewhere else. I’ll just put on some kind of dumb show and just sit there. Maybe I’ll be eating or drinking a glass of wine. So, and I know that’s self-comfort afterwards cause I’m like, man, why did I just do that? Yeah, it’s kind of, you know, like, that wasn’t awesome. Maybe I did that for too long, and I sacrifice sleep, which I need.

So, I, I know, I do a mental check on that. It’s, it’s never It’s never done. It’s always, we’re always tweaking it and perfecting it and Um, and trying to kind of find that balance of what’s, and it changes, I think from day to day of what you need. Giving myself certainly more grace over the holiday season, but yet not, don’t want to just go all into the self-com stuff because I’m not going to feel good about myself, you know, in the new year. If that’s the case, it’s like, Girl, you’ve been working hard on these habits and keep that going.

So all of that I think is, is good. We’re human. We’re human beings. 0, 100%. It’s definitely always a work in progress, but I think in creating the awareness, it links you to the agency. Once you can start seeing your thoughts and seeing your choices, that’s agency. You’re creating awareness and therefore you can choose how you want to help in the future. And what you also said too is powerful is the idea of asking yourself questions. I think questions are powerful. It sets your mind up to actually think about The thing that you are doing and like, is it helpful?

Do I really want to do this? Like, how does that make me feel? And so, yeah, or what do I want to create in this moment? Who do I want to be today as a caregiver? Or who do I want to be for myself today? And when you set yourself up for those kind of open questions, you’ll be amazed with what your brain comes up with. Absolutely, absolutely. I want to ask you a couple of questions from the lightning round. So this is the book I wrote called Just For You, a Daily Self-care Journal. Yeah.

So, what did, what activity did you do as a child, Maggie, that brought you great joy? Well, I think for me, anything with nature. So specifically, there was a tree in front of our house that I used to climb. And that’s just what I did. I mean, we, we were, I was the kid of an immigrant family, and so my parents were always at work. And so I was outside all the time that I could be self-entertained. I know with nature in any way. I agree. I spent my life, my life as a kid outside too.

Is there any habit, um, I’m gonna give you a choice because they’re on a spread here, the same different questions. You, you can either answer, what’s one habit that you’re trying to subtract from your life, or what’s one habit you’re trying to add to your life. Ah, so those are all really, really good questions, as I was talking about before. So, you know, I, I think my, the thing that I would like to subtract is My tendency toward perfection. I think that that I still have that tendency, even though I know that that was a thing that sort of contributed to, to my stuckness, if you will, you know, of my daughter’s diagnosis.

And I wanted to sort of step back from that and sort of question it every time it comes up because, you know, perfection in life doesn’t actually exist. Like, what, what am I pursuing? But I do think that is like part of my, the way I was thinking about things growing up and I’d like to kind of move away from that. Yeah. Yeah. And whose definition are we trying to match to? And going back to your daughter and my daughters and our kids, like, what are we teaching them that, you know, that it’s got to be, yeah, all of that.

So I think what’s step one? Step one is just noticing it, right? That you’re doing it. Yeah. Good stuff. OK. Fun question. What’s a song that you can’t help but get up and dance to? Oh my gosh. There’s so many really, or an artist or it could be any. OK. So there’s this, the, I forgot the name of it. It’s like, it’s like, I’m too sexy for my cat. Yes. What was that called again? I don’t know, but that’s one that my husband will often say, yeah, I’m too sexy, I think is what it’s what it’s called.

Like that’s, for some reason, that’s one of his songs about that and Macho Man. Like I hear him kind of singing those and I’m like, OK, you got, you’ve got to, you know, you’re powering yourself up over there. I love it. So yeah. I think it’s a one hit wonder. I’ll try to look it up and and put it in the in the show notes for folks. So how do, let’s wrap this up here today, Maggie. Like anything you want to add, parting words of wisdom for caregivers, and then how do they, how do they stay connected to you and how do people that maybe want to tap into your speaking services and your coaching service, like how do they find you?

All right, well, I’m going to answer that question, including answering the question that I never actually got to. What was I trying to create more of? Like you asked me, do I want to add more. So the answer to that question actually is going to answer this one too. And it’s that I want more human connection, like deep human connection. And I think that that is the thing that I always sort of tell other people who are starting on their caregiver journey, or if they’re in the middle of it, it’s just connecting with other people, experiencing a similar journey and creating a community.

I Similar to my daughter, and even though I, I feel like she’s actually much more of a social person than I am, I feel like we both feel deeply enriched when we talk to people, when we meet new people, you know, at Rare Disease Week or when I event and I hear about how people have struggled, but really connect with the love that they have for that person they’re giving for, and their incredible strength and courage while doing it. And I just cannot ever get enough of that.

And it’s like helpful to me. I feel like it’s helpful to the person sharing that story with me, and it just fully enriches my human experience. That’s beautiful. Yeah, that matter. Yes, I know. Connecting with amazing humans, I think is fantastic. Nice. Well, we’re doing it. We’re doing it right now. You’re gonna, you’re going to connect to lots of amazing humans, um, hopefully that are listening to this podcast and people are going to listen and certainly share it if you know somebody else that can. Benefit from it. Definitely.

How do people stay connected to you, Maggie? Thank you. I have a website. It’s called, well, it’s www. maggie KangMD.com. And if you want to subscribe to the newsletter, just a slash caregiver. OK, good. And I guess everything is on my website. I really, if you’re interested in the TEDx talk and the Psychology Today, I think is on my blog there. If it’s not, I’m going to add it today. But Nell’s book is also on the website if anybody. You know, kids or, it’s called My Hospital Story.

So we’ll, we’ll link to that too. What a fabulous thing that she can say. She’s a published author. Well, I know, it’s so exciting. It’s, it’s, it’s really wonderful that she also doing some speaking too, Maggie? She is actually, I mean, she spoke at the Rare Disease caucus during Rare Disease. I’m, so yeah, and we do a lot of speaking. How empowering it is. I know she’s only 17 and it’s incredible, the impact that she has had and I love that she can use her voice to do that.

Yeah, well, I look forward to staying humanly connected to both of you all and, and seeing where your journey takes you next and, you know, our communities are expanding and growing with support. And so thank you so much for being vulnerable today, sharing your story, and for the work that you do, the valuable work that you do in your family and for the rare disease community. Thank you, and I feel the same way about your work. I learned a lot about caregiving on your show, so thank you.

You’re welcome. Thank you. We are Sue Ryan and Nancy Treister. Together, we host the Caregivers’s Journey podcast. Our podcast delivers practical tips and candid conversations to help you tackle day to day dementia family caregiving challenges with confidence, patience, and peace of mind. We share answers to the questions you don’t know to ask and the resources we wish we’d had. Our goal is to help you learn faster and more easily than we did. Listen to our show on demand at the Caregivers Journey. org or on any major podcast platform.

Thanks for listening to the Happy Healthy Caregiver podcast on the Whole Care Network. I hope this episode provided encouragement and practical tips to infuse into your life. You’ll find the show notes and all the resources mentioned at happyhealthy Caregiver.com. I also invite you to check out previous episodes of the podcast that you may have missed. If you enjoyed the show, be sure to subscribe so you never miss an episode. Ratings and reviews also help others discover the podcast, and sharing with a fellow caregiver is a great way to spread support.

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