The Bare Minimum

Raylene Lewis: [00:00:00] Hi there, and thank you for joining us on AVM Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's side of brain injury with honest talk, news, information and discussion for our community. Being a parent of a medically complex child is an extremely difficult path to suddenly find yourself on. I'm Raylene Lewis and 

Raylene Lewis: my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us. In Brain News this week, the short film Time Bomb was released by Director and AVM Survivor David Melanonin.

The goal of the film was to showcase the real life challenges of a rare disease diagnosis, and it was created with the help of the Aneurysm and AVM Foundation. Personally, I tried to watch the production, but it just hit too close to [00:01:00] home when the main character grabs his head and goes to the ground.

That was it. I burst into tears and had to turn off the movie, and I haven't turned it back on. I'll add the link to this short film in the description to this podcast so that anybody who wants to see it will have an easy way to access the movie. I think the film truly does a great job about bringing awareness to brain vessel disease, and I appreciate all the hard work and effort done to showcase what it's like to the general public.

Although I did not view the film in its entirety, my husband did, and he gave me the ultra short version. Now, slight spoiler alert, the film does have a happy ending. And while I'm happy for the director, truly, I am very, very happy that he was able to have his surgery and go on with his life, I just think it would've been nice and he could have done a better job of explaining details on how his ending isn't the way things always turn out.

[00:02:00] It would be nice if he could have included some other characters he meets on his journey that maybe don't have the same options he has afforded. And at least look slightly at their journey too. However, it's likely that I'm just a jealous mama . As my son's AVM is not currently operable, and even though it's located in the Pariatal lobe, just like the main character of the film, I get that he only had 20 minutes to tell his story.

My problem is just that squeaky clean, happy ending. It left me upset, salty. You name it, but fair is where you go to buy cotton candy. It is not life. And speaking of cotton candy, with the holidays approaching decadent treats and delicious foods on the horizon, it's no wonder health and weight loss become added priorities on many a New Year's resolution list.

But, How to put in place something that sticks and works can be very elusive. I remember doctors and friends this time last year when we were [00:03:00] going through Kyler's, massive brain swelling, reminding me to be sure to take care of myself too, and I just laughed. Sometimes when parents are in survival mode, health and fitness is at the bottom of all lists, even New Year's resolutions .

To get us started today for the holidays and New Year, I have health and fitness coach Elizabeth visiting with us today. Well, Elizabeth, thank you so very much for joining us. Can you tell me a little bit about yourself and your business? 

Elizabeth Nero: Sure, so I'm a personal coach so I can work with folks with fitness related things or nutrition related things.

And really a lot of it ends up being a lot of behavior change. So when it comes to fitness and nutrition, a lot of what we're doing is we're trying to combat. All the things in life basically that you know, kind of make it a little bit more challenging or difficult to either maintain or improve our health and fitness.

And so I'm working with people to just be better [00:04:00] versions of themselves in whatever capacity they might be looking 

Raylene Lewis: to improve. You know, that sounds absolutely wonderful. But as a mom of a kid who has suffered a traumatic brain injury and I feel like we're constantly traveling to medical doctor appointments and to therapy for my kid, cause I'm trying to get them on the right track.

It's really hard. Parents in this situation to even think about themselves, you know, in terms of make sure that we're eating the right thing or taking care of our bodies. What advice do you have? 

Elizabeth Nero: That is the thing, is that you guys are so focused on your, on your child and you're, and focused on the importance of making sure that they get everything that they need.

But there's so many things that you need as a caregiver in order to provide you know, your best self. Your child and the situation that you are kind of managing on a day-to-day basis. And so you know, things that are important for you as a caregiver of course are gonna be [00:05:00] sleep nutrition, you know, but like, there's all kinds of reasons why we don't do that.

We've got the time, the time pressure, we have things that we are managing. And then of course, you know, we're tired. So, you know, I know. When we're drained at the end of the day, you know, that's the last thing on our mind is maybe cooking a meal that you know, is fueling. And of course, like motivation, but the 

Raylene Lewis: motivation to do so is just really hard 

Elizabeth Nero: Sometimes.

It's something that if we rely on motivation to do things, quite often they're not going to happen. If you know that you're not getting enough sleep and you're feeling tired all the time, maybe that's where you wanna focus. You guys have a lot of things going on. I often find that you know, clients go to bed and they're like, I just can't turn my brain off.

Like, it's hard to, yeah. So so often what I'll suggests is doing a brain dump and like before you get it, go lay down in bed. Maybe just have like a piece of paper, your phone or a journal. Write everything that is on your mind for the next day so that you're not [00:06:00] thinking about it when you go to bed.

That'll help me sleep better. It might, it might help you feel a little more relaxed. Or maybe just in control of your thoughts. Right. The other thing too is, is looking at nutrition or fuel. So making sure there's some space between your last meal of the night and going to bed can also improve maybe the quality of your sleep.

How much, how much space 

on 

Raylene Lewis: that? Like before we eat, before we, before we should go to bed? I 

Elizabeth Nero: used to say that about two to three hours, but more recent studies that I've seen have been as much as four hours. optimal sleep that just allows your body to do what it needs to when it's sleeping. Your resting heart rate could be higher if you're eating closer to bedtime.

Most importantly, solid wake up time is gonna be, I would say, even more beneficial than going to bed, cuz I know that might vary from day to day, but, You know, getting up at the same time every day can be helpful as well just to manifest your, your energy, because sometimes I don't know about you, but those days you're like, I'm gonna sleep in today, and you get that extra two or three [00:07:00] hours and you wake up at 8:00 AM instead of five 

thirty 

Elizabeth Nero: like you normally do, and you almost feel like you're a little more tired during the day or maybe even dragging just cuz you might have you know, had different sleep cycles or woken up in a different place in your sleep cycle. So those things can be helpful, just having regular times and then just you know, thinking about when to turn the dials up and down.

So you have lots of things going on. You know, there should be some baseline of self-care that you are providing for yourself. There's a phrase that we use sometimes it's called. Bam. Like what's your bam? What is your bare ass minimum? ? So like, you know, like ev, all of us should have that. Like, whatever that might be, if it's, you know, okay, I'm, you know, I'm at least gonna get out of the house and have a walk around the block today and I'm gonna have one meal with a vegetable and you know, I'm gonna take.

Two minutes just to sit and breathe for myself. Whatever those like bare things are that you might need to do. Like those should be those are like where I say our dials, like we [00:08:00] kind of have to kind of manage these dials. I think a lot of times we think, oh, everything in moderation, you know, or like, if everything is, is not happening, then nothing is happening.

We kind of set the tone for what our normal is and then we can turn it up a little bit. We're able, really taking one thing at a time is, is the best opportunity. We're not gonna go to bed at the same time every night and get five nutritious meals and go to the gym for an hour, you know, today. Like that probably isn't gonna happen.

So picking, like I mentioned, that one thing that you feel like might make the most difference for you if it's sleep, maybe you wanna focus on sleep habits, if it's nutrition, if you know you really have been maybe going through the drive. McDonald's more often than cooking a home cooked meal. What are some ways to maybe shift that a little bit?

Could you order some prepared food some prepared meals, or could you maybe meal prep, some things ahead of time that you can throw together quickly? All the grocery stores now have [00:09:00] so many great options with convenience, with freshly prepared foods and things, not even just you know, for individuals.

I've been seeing them, you. Family size, meals even being available. And there's lots of options, even like through things like Hello Fresh or you know, meal companies like that where you can order them ahead of time and have them like in the freezer ready to pop, pop in the oven or microwave to make something easy and 

Raylene Lewis: convenient.

Yeah, those are really good ideas. I've never even thought about, you know, I. So guilty of when I feel like my plate is overly full. I'm like, I'm just gonna order a pizza or something, you know? But you're right. We just got a Costco in our town and I've, I've walked by those meals a couple times going, oh gosh, that looks so easy and good.

But I, I haven't tried it. So, you know, I'll definitely do that. And. We I know I went online, there's something called Sun Basket. So even if you're somebody who likes to eat like a little bit more organic and they just deliver it to the door with a here's how to do it and it's gonna take 10 minutes.

[00:10:00] So, I mean, those are great ideas. Do you have any other ideas in particular for like helping us. 

Elizabeth Nero: Exercise, you are in a position where you are caring for some someone else, and it's long hours, you're putting in a lot of time there. So any movement counts, right? So it might be for some of us just simply getting outside and walking, just quiet in our heads, like no stimulation.

And of course, in this digital age, there's lots of programs and things we can do at home that are not an hour long. So it doesn't require travel to a gym. , it doesn't require lots of equipment. There's many you know, things that we can do online as far as like 10 minutes, you know, nothing is too, is too small.

So sometimes you need the guidance of a coach or trainer maybe to figure out what that might look like for you. Because there are so many options, it can be confusing. It's funny cuz I say like, I got into this because of nutrition and fitness, but you know, there's so many different levels. B be before that, [00:11:00] before we, you know, get into those nutrition and, and fitness habits because we're living our life and we have to you know, live in a way that that feels good.

And so we're always trying to fit in the, the fitness and the nutrition and not deal with like the other stuff. But sometimes it's more about even like managing the. Before we can get to, you know, some of the you know, nutrition issues that we might deal with, there may be like some emotional eating going on.

So there's lots of things to kind of manage. 

Raylene Lewis: How much does a health coach typically cost? And then what would, what would one expect? Like how often do you meet? How does 

Elizabeth Nero: all that work? So it just kind of depends. I mean, everyone is a little bit different. I do one-on-one coaching. You know, for me, I would say for like, if you're looking for like a personal coach to like customize a program for you and meet with you on a one-to-one basis, you know, once to twice a month, it's probably gonna run between.

200 to [00:12:00] $500 a month, just depending on like, you know who the coach is and what their program might cost. I'll meet with clients twice a month, maybe for 45 minutes to an hour. So it really kind of depends on how much, how much accountability do you need and, and where you're coming from. From a knowledge basis.

You might just feel clueless. Maybe you've been trying everything for years. You just haven't found what works for you yet. Sometimes it can be very helpful to talk to someone to figure out a little more direction on that, 

Raylene Lewis: and you can do just like single, like one time consultations and stuff too, right?

Yeah. I, I mean, I also tell you that I think there's a lot of misconceptions because when I realized that we needed to focus on my kiddo having a more healthy brain because he was dealing with radiation and swelling and everything else. A friend gave me a book called The Obesity Code. Yes. And I was Written by Jason Fung, I think is the, is the author.

And I was like, well, I [00:13:00] don't know how this will help, but, you know. Okay. Yeah. And I read the book and my eyes were just completely opened on, you know, the, a lot of the false advertising for what you should be eating and what you shouldn't be eating to stay healthy. And in particular sugars, like my, my mind was just completely opened up on.

On sugars and how much sugars are really in some foods. And you're like, oh, I'm gonna drink this because it's diet, or, oh, I'm going to eat this because it says it's fat free. And so I'm being healthier and really you're not at all. And a lot of the doctors in, I guess the area. For stroke, sometimes recommend like keto.

And while I'm not super familiar about that, I, I know that there are a lot of parents who like try that sort of thing for for their family. 

Elizabeth Nero: That was developed as a treatment for kids with like epilepsy. Someone discovered that, you know, they could do it and look good in a bikini and now . Now it's, it's more of a mainstream, 

Raylene Lewis: it's part of your background.[00:14:00] 

Are you familiar with those sorts of things? 

Elizabeth Nero: Yes. I work with people with all different types of eating, I would say eating strategies. I've got level one and a level two precision Nutrition certification. That's a science, evidence-based nutrition coaching. And so, Allows me to be very versatile with the types of clients that I work with.

Because we are all different. We sometimes feel like we have to be suffering in order for it to be working. Right. And that is not necessarily the case either. You want to, you know, again, like have that kind of. that bam or that minimum that you come back to. So whatever that might be that is something that you should strive for and that should be 

Raylene Lewis: something easy.

I love it. I love the the BAM dials. That's great. We really have to remember that we are taking care of somebody else and we can't do a good job of. Until we take care of ourselves too. Because the absolute [00:15:00] worst thing any mama knows is having to take care of kids and family and everything else. When we're sick and the healthier we are, the less chance it is that we're gonna get sick.

It's just something that has to be done because there are people that are counting on us. What's the best way for somebody to reach out My. 

Elizabeth Nero: Handle on Instagram is wannabe fitness forever, and of course I'm on Facebook as well under the same, the same handle, so you can find me 

Raylene Lewis: there as well. Thank you so much for your advice and information today.

I really appreciate you joining us. You're so welcome. 

Elizabeth Nero: Thanks for having me. Raylene. 

Raylene Lewis: In chapter four of our focus books Suffer Strong. Jay talks about the need to redefine trauma. He spends the first part of the chapter teaching the story of Oui pottery, and this is honestly one of my very favorite parts of the book.

He explains the Japanese practice of mending broken pottery under the belief that an object's history is more important than its perfection, [00:16:00] the way consi pottery is repaired. It honors the breaking and really the surviving of the piece as a whole by highlighting its broken pieces. With gold lacquer once repaired with its golden scar, the piece is seen as stronger, even more valuable than before.

Consi pottery consists of original pieces, but sometimes also includes new pieces of pottery too, when the old pieces are too far gone to be used as they once were. Jay points out that forces beyond our control, break apart the world we thought we knew. But the breaking does not have to be the ending of our story.

Similar to Katherine and Jay, our family refers to Kyle's bleed as a line of demarcation that runs straight through our family history. It's a big scar that creates a permanent divide between the life that. And the life that is for me. April 10th, 2020 was the day that forever ripped the life I thought.

I knew it [00:17:00] forever scarred my heart and forever changed my future hopes for Kyler and our family. But Jay points out this dramatic shift in life, which forever is. Before X occurred and after can with time and care feel less like the chasms of despair and more like consi pottery, new creations made with pieces of our old lives aligned with golden hope of a different but stronger life now.

A new vessel made with pieces of ours and others broken lives put back together. God, he says, bridges all our great divides and holds together all things, especially the broken ones. Today's quote is by George D. Smith. Patience is not simply the ability to wait. It is how we behave while we're waiting. I always like to end our time together with a motivational song recommendation.

I don't play the song because of [00:18:00] copyright laws, but there have been many times on this journey where a song really spoke out to me and helped me with my. Today, I'm recommending you. Check out, try everything written by Sia and performed by Shakira from the 2016 movie Zootopia. This song has a special place in my heart because before Kyle's bleed, he had an English assignment where he had to relate a real person to a movie character and explain their theme song.

Such an easy assignment, he said . 

Raylene Lewis: Really? I asked, oh yeah, he replied, I picked you. You heard Judy hops through and through and try. Everything is your life song. You don't care if you fail or not, mom, you'll just get up and try again. No, I won't give up. No, I won't give in until I reach the end and then I'll start again. I want to try, even though I could fail, I'll keep making those new mistakes. Thank you, Kyler. 

Raylene Lewis: And as [00:19:00] always, if you have questions, have a topic you would like to hear about or a great song or motivational quote, don't be shy. Share it in the comments and let us know. And if you liked what you heard today, please go online and rate this podcast.

Remember, you're never walking this journey alone. Take care of y'all.