041 Living Beyond Brain Fog

Congratulations, Lyme Fighter! Today you had the courage to open your eyes and face another day. Welcome to Lyme Voice. This show's purpose is to help you put the puzzle pieces of Lyme into place. Each episode is designed to inspire, educate, and encourage you on your Lyme journey to wellness. Together we will fight. Together we will heal. Together we will live. Here are your hosts, Aaron and Sarah Sanchez.

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Well, hello, Lion Voice listeners.

You have Aaron and Sarah Sanchez. We are coming to you from Woodland Park, Colorado. Yes, that's right, we have made the move. We're no longer New Mexicans. We are Coloradoans. So the reason for our move is to attend a Bible college called Charis Bible College, and I think we've spoke on the mic a little bit about this place and what they do here. One of the main things that they talk about is healing and just what an important part that's been to our life. So we're up here to learn more about healing, on how to heal and how to to be healed. Very exciting for us to be up here. This has been about 2 years in the making, and to move all 5 of our kids and us, and took about 40 feet of trailer to get us all out here. Yeah, a lot of packing, a lot of boxes. We have sore muscles and sore backs right now, but we're so happy to be here, and it's already been so healing.

Like, one of the things I've said so many times is I felt like really for the last decade I've been in a prison made of drywall. And it's been better over the last year because I can get out and do more, but just tired. Like, I want to be surrounded by something that's beautiful, and Rio Rancho is not beautiful.

In its own way, but—

Yeah, it has its own Southwestern feel, but Woodland Park is amazing.

It's gorgeous.

The kids can walk everywhere. We can walk everywhere.

Yeah, we went from a big town to a nice little town where, like, even today the garbage man came by and introduced himself, which is unusual for us, you know. So we're happy to be in a little town and smaller areas. Got to getting to know people here in town. Just even going anywhere in town, they ask your name, you know. At the bank, they want to know who you are, what you're doing here. And so we're very excited to be here. Really happy that we actually made it. It was hard work to get out here, but we're here, and we're going to be talking more. Keep listening because we're going to actually interview one of the main speakers at Charis about healing. Just for your information, if you want to look up charis.net or awmi.net, both of those have a bunch of information about healing and a lot of free resources where you can just download right off of their website and listen and to know more. And it has been a huge part in our healing. I've experienced healing there, Sarah has, a couple of our kids have. It's just really, really powerful, powerful material and powerful information.

Yeah, for me, Invita was my crisis center. I was absolutely in crisis going out there completely saved my life. But then, you know, even 2, 3 years later, as I kind of reached my capacity as far as the amount of energy and healing that I had gotten from Invita, I felt like I had kind of maxed out. And since then, since March of 2016, by implementing some of the principles that we've learned as a family, we have just seen a tremendous amount of healing.

Yeah, in all areas, from allergies to Lyme type symptoms to neurological stuff to migraines.

A lot of chronic issues we don't deal with anymore because of the way we've learned to deal with them.

Yeah, and soul healing as well. I mean, it's been really good for our souls. As many of you know, if you're dealing with Lyme, your soul has been wounded by this event, by this trauma. And that needs just as much healing as your body does. So can't say enough good things. In fact, we will keep saying more good things about this place and about what we're learning. So we're going to be attending college here for the next 3 years, going back to school.

I know, we're so excited.

Yeah. So what else is going on with us?

Well, if you have not watched our documentary, Disappearing from Society, Please get on lymeboice.com, and if you register for our newsletter, it will get emailed out to you instantly. You can always email us.

And then also our children's book, Little Bite Big Trouble.

Little Bite Big Trouble, look that up on Amazon. Great book.

Yeah, just kind of about the logistics of Lyme and how it affects your family, and it's told through the— a bird's eye view of Lyme disease.

Yeah, super proud of that book, even though I didn't do a lot on it. Sarah did it all, but it is quite an achievement. So look both of those up. And what else?

That's it.

This interview is with my sister Stephanie, and I'm really excited to bring it to you guys because for 2 years we've talked about this interview and just the similarities between concussion and any brain damage has the same repercussions, whether it's through a car accident or through Lyme, right? The dysfunction ends up looking the same, and most people don't have anyone to talk to about that. And so I feel like this conversation is really valuable because of that reason. It's just so validating to hear someone acknowledge what you've been through or kind of acknowledge the confusion of it.

Yeah, I mean, even though I've watched both of you learn or lived through these situations, just by listening and hearing this interview, it was— it explained a lot more even in my brain what you both have gone through, the trauma involved with brain injury, whether it be through neurological stuff or through actual brain injury. So yeah, please enjoy. I think you guys will really enjoy it. It's a great conversation, and we'll talk to you soon.

Welcome, friends, to this awesome episode with my sister Stephanie Richards. Steph, thanks so much for being here.

Thank you for having me.

So we've been talking. I have been wanting to interview you for at least 2 years, right? 2 years?

Just about. Yes.

And it was so—

and here we are.

Here we are. A few weeks ago on Facebook, there was an article that was going around that was talking about the similarities between Lyme brain or brain fog and a concussion. And I was so excited when I saw it because I was like, we already knew that. We've had this discussion for years.

Yeah, we didn't need any further research to know that that was true.

Yeah. And I think one of the things I want to talk about is, you know, this whole entire episode was really born out of our conversations. Between two brain-damaged individuals who were at one point both confident and capable, and yet we both have struggled with different types of traumatic brain injuries and really were left to figure out life when you don't really have all your brain cells working. And I think one of the things I appreciated about our relationship and talking through this was I felt like you were probably one of the only people in the world who understood the complexities, the longevities, or the longevity and the frustrations of living below your full potential. So take us back. I mean, my brain fog came over years, but for you it was instantaneous because you were in a car accident. So take us back to that. Year where all of a sudden you're thrown into basically the realm of being disabled, still needing to work, and having to navigate the medical system even for adequate treatment?

Okay, well, I'll probably just take you back to day one of my car accident because I think that's a good starting point. Like you said, it's instantaneous issue, so there was no question where it came from. And after my car accident, I went to the emergency room and I did have a severe concussion. However, no treatment was done around my head. I didn't have any CT scan or anything like that. It wasn't until 3 weeks after my car accident, you know, for that 3 weeks, I wasn't feeling well. I just didn't quite understand how unwell I was at that point. And it wasn't until 3 weeks after the accident that I couldn't see except for a little corner spot in my right eye, and I was throwing up. And so at that point, I went back to the emergency room. I ended up getting a CT scan. However, they didn't find anything in the CT scan, and it wasn't until another 6 weeks, I believe, after that that I was able to get an MRI. And in the MRI, they showed that, or they said that I was an example of shaken baby syndrome as an adult, was the best explanation that they could give me. And they said that there was bruising on both sides of my brain and also a little bit in the frontal lobe as well. And That was about it. Unfortunately, I was having a lot of short-term memory loss. I was having vision problems. My body was still recovering from the accident itself physically, but also my brain was trying to figure out how to get things to function properly again. So I had, you know, all the symptoms of a concussion, but it continued on. And I wasn't able to get even that little answer from the MRI until after 9 weeks after my accident. So I was basically in a fog. I really didn't have any idea how bad it was at the time because I was still going to work Monday through Friday. And, you know, I remember you, Sarah, you were even telling me, you need to rest, you know, you shouldn't be going to work right now. And I thought, but I didn't understand the issues really. I didn't feel like I, you know, I thought, well, I slept all night and, you know, I took a nap at lunchtime and I took a nap when I got home from work. So I'm getting my rest, but I still need to go to work. And so I was just kind of chugging through the best I could. So one thing I forgot to mention is at the 3-week mark, when I did go back to the emergency room, they did suggest that I had post-concussion syndrome. And I definitely did because I had, I think, 10 of the 11 symptoms that they mentioned as far as speech issues and fatigue and short-term memory loss and vision issues and headaches. And, you know, the list goes on. So let's see, my car accident was in February and I didn't get my MRI until May. So it was pretty foggy. And I did see a neurologist that summer because I wasn't quite sure what to do about some of the symptoms I had. One was my short-term memory was so bad that I couldn't read properly. So I could read each individual word, but I couldn't remember one word long enough to keep the sentence together.

Let me interject right here. And while this was going on, I was so concerned about you, but I didn't understand what a concussion was. And I was dealing with my own issues because I had been involved in an auto accident, was dealing with the exact same things even though we both had different causes. But later on, it would take you years before you got to read the book by Claudia. Claudia Osborne wrote a book called Over My Head, and it's her story of a head injury that she incurred. And I remember you saying, and she says this in the book, she says, but even as I registered the meaning of each word, the importance of the sentence as a whole disappeared.

Mhm. Exactly. And I would read it again, and it was as if I would read it, was reading it for the first time. So to read it 2 or 3 times at that point didn't make a difference. And so in my mind, I couldn't read. I couldn't remember it. I couldn't hold on to it long enough to chew on it and take it in and read the sentence.

Yeah.

So that was a scary time. So I had gone to the neurologist and, you know, I was offered up medicine for headaches. But the side effects outweighed the help that it would give. So I'd say for the first 9 months after my accident, you know, I did try a few different medications that would help with headaches, or, you know, I was having speech issues where I would— I didn't know what to do about that because the neurologist basically said, hey, I can give you some medicine for these symptoms, but the side effects outweigh the benefits, or you can just wait. Because like a bruise that you'll have on your arm takes some time to heal. And they said a bruise in your brain is the same way, except they would say, but we're not really sure what it's going to look like on the other end. So it may get better and it may not. But either way, you're just going to have to wait it out. And at that time, that seemed like a big bummer because I wanted it to be fixed right away. And at the 9-month mark, I wanted to get rid of any medications that I was on for pain or headaches because I just felt foggy-headed that whole time. And eventually, when I cleaned out my medicine cabinet, there were medicines in there I didn't even remember getting. I didn't even remember why I had them. And I thought, well, that can't be good. You know, I don't even remember picking this up. And honestly, that first year, you know, I was going to work every day. I was sleeping 14, 15 hours a day sometimes. I would sleep in my car at lunch 4 days a week, sometimes 5, just to get through the day. And then after work, when I got home, I usually rested. If I needed to go to the store, you know, I would have to rest and then go to the store. Or go to the store and then rest and not make dinner. I had to kind of choose my one activity after work before I ran out of energy, which is exactly what I dealt with with Lyme. Choose your activity for the day and that's it.

Yeah. So tell us about the shift in your personality during this time, because you and I had this discussion many, many times, but one of the things that I don't know if you're famous for it, but within our family you're famous for— you just have this really soft, kind personality. And one of the things I've always loved about you is you just have this like soft laugh, soft laugh that makes everybody feel good. And so like, you're one of those people that when you hang out with, you know, when I hang out with you, I feel amazing.

Oh, I'm so glad.

But I know that your personality got changed in that accident. So talk to us about that aspect of things.

Sure. Well, I feel like my personality, there's still a piece of it that I'm waiting to come back that may never come back. And I feel like, you know, for a while, it took a long time for me to recognize that it was my personality because for a long time I had such severe fatigue that I thought everything, any symptoms that I had from the accident, I felt like it was because I was tired. And so it wasn't necessarily a memory loss issue or vision problem. You know, if I was more tired, my vision was worse. And if I was more tired, it was harder for me to find the right words to say. And even if I had the words in my head, to get them to come out of my mouth properly was a challenge all on its own. And just such fatigue that I had for so many years. I feel like I blamed a lot of stuff, a lot of those symptoms on being tired. It wasn't really until I started to— 3 or 4 years in, until I started to gain some of that energy back, that I was really able to pinpoint where my personality had changed. And I call it the Stephanie before the accident and then the after Stephanie. And, you know, the Stephanie before was early 20s, not too much responsibility. There's definitely a dash of immaturity in there and carefree type attitude. And my accident definitely presented a you are not invisible piece to my life, a bit of reality, you know, that I was not invincible. And I feel like from day one with the fatigue and the confusion of my cognitive abilities, I feel like it changed my personality in a way that I felt like the before Stephanie didn't have insecurities and didn't have doubt about her capability of getting something done or being available on Friday night. You know, if it's Monday and somebody asks if you're available on Friday night, it was like, oh, I don't know. I don't know how I'm going to feel on Friday. That's so far away. And I have all this stuff to do between now and then. And I couldn't commit to a simple fun activity that was gonna be on Friday night. And so it was such a different thought process that I've had ever since my accident because it incorporates fatigue, it incorporates if I was gonna have headaches, it incorporated insecurities when I'm talking to people. Now I have this awareness of if my words are coming out properly or not. Yeah, whereas before that was effortless. I'm a very social person. I get energized by people. I love hanging out with people, and, you know, to be alone is like, boo, it's not very much fun. And so after my accident, it's not that I don't enjoy being around people. I feel like deep down in my heart, I still love being social and I love interacting with others. However, there's this additional piece that takes extra effort and energy, just making sure that I'm awake, you know, while I'm at that activity and that I'm interacting with others and that my words are coming out properly. And, you know, it takes energy to remember what the conversation is about. And so, you know, sometimes I would have moments of complete unawareness. I'd be mid-sentence and my thoughts would completely leave me, and there was no getting it back. So it wasn't like, oh, let me think about it for a second and it'll come back. It wouldn't. It's like, okay, well, we're moving on to something else. What else do you guys want to talk about? So there's almost like, you know, with people that you know, it's okay, or it's a little easier to be like, you know what, I totally forgot what I was talking about. Can we move on to something else? And my friends and family understand. But if you're interacting with people at work or out in the world and you just stop talking and forget what you were talking about, it's just odd. And it's just an additional thing that I'm aware of. And, you know, so—

and mental weight, don't you think?

Yes, absolutely. It's almost like if you have a homework assignment that's due on Saturday, you know, it might be Monday, but you're going to think about every day until it's due. Even if you're not going to start until Friday, you'll probably think about it on Tuesday and you'll think about it on Wednesday, Thursday, because it just exists. Nobody can see that, but it is there.

Yeah. You know, I have all these great quotes from Claudia's book over my head. And when you were saying that, it reminded me of one of her quotes, and she said, it was a relief to be in the company of people who could help me forget the person I had become because they knew the person I used to be. And I have— yeah, everything you're saying is exactly what people with chronic Lyme, especially neurological Lyme, deal with. Because their brains are changed in ways that I don't even think most of the physicians understand.

Yeah, and I think you're right, Sarah. I don't think that they are capable of fully understanding. And I think that's something that we have in common. You know, when you experience a loss like that and just the cognitive Dysfunction, because I think it's hard for people to believe. I think it's hard for them to fully understand and fully grasp what severe fatigue does, what things that go undiagnosed does to people, and the effort that goes into trying to figure that out. Like you said, it's just a mental weight that you can tell them about and they can understand, but they'll only understand what you're telling them. They won't actually feel that unless they've experienced it themselves. So even to read, even to read the book over my head, it was really comforting to hear her tell me stories that I've been telling my husband or telling you or telling the doctor, you know, the way that it affects her everyday functioning, there was so much comfort in just hearing her side of the story because I'm sitting there nodding my head and of course crying. I'm like, yes, this is what I've been saying. You know, she gets it. She gets it because she's telling me. And I feel like there's a lot of comfort in that.

There is, because I think, you know, throughout this process, The problem with brain damage is that you don't understand how it impacts you. You still feel normal. You remember what normal was like. You know you're hurt in some way. You know you're not quite normal, but the implications and the ability to articulate that take years. And so it just leaves you in this place of being deeply confused at what I would say I would say like, oh, I have these inadequacies or hurdles, mental hurdles that I have to jump. But even the way my nervous system responded to stress had completely and totally changed, where as before I would look at an event or something and that stress, I liked that stress of life, like taking on a challenge or going to the next level. But I don't like that anymore. Because my brain doesn't respond the same way.

Yeah, I couldn't agree more. And I know that part of my growth over the years has been trying not to give the past Stephanie too much credit, you know, because I'm like, she wasn't insecure and she never doubted herself and she had fun all the time and she never cried and she just, you know, all these things. And it's like, wow, she sounds amazing and perfect. So, but it's taken me many years. It's taken me a lot of thought, a lot a lot of time and effort to kind of bring that past Stephanie back to earth and remember that she did forget things and she wasn't just happy all the time. And, you know, she did struggle with things. Now things are definitely different. And one thing I feel like, a major thing, I feel like my personality has changed so much in a few different areas. And that's it. I just didn't feel like I ever struggled with insecurities. And I feel like they're just present now. I feel like insecurities that didn't exist before exist. And so it makes me a little bit more hesitant, a little less confident than I used to be. And that doesn't feel like me.

Yeah.

And that, I feel like, is the piece of my personality that I feel like is missing. And I feel like I have a good example for that. So if I'm trying to make an effort to go out and meet new people, which typically is not a thing, I just go and do that. But since after my accident It's all this thought around having to put effort into going and meeting people and making new friends. And that thought process didn't exist before. It didn't feel heavy to need to go and do that. There's also a part of me that feels like, mm, I don't really wanna do that. I don't really wanna go meet new people and put the energy into making new friends. And that piece right there is the piece of my personality that I feel like I'm missing, because that was definitely not part of my vocabulary or my thought process in any way. And in that sense, I feel like it just makes me sad. You know, it makes me feel like, who is this girl who doesn't want to put the energy into going and meeting new people? I don't even know this person. You know, it's like, this isn't me. So I feel like, you know, although I've matured over the years, and so you will naturally change a little bit, I feel like that's a piece of me that I've been waiting for it to come back, and it just hasn't yet. So it, it may not ever, you know, figuring out how to deal with that.

But well, and you and I are both extroverts, and so socializing and making friends comes very easy. But I had a similar situation with Derek's robotics team— my oldest son Derek has a robotics tournament every year, and so we go with these same families to the same place once a year and spend a weekend in a hotel. And afterwards we go to White Sands and everyone plays for the whole day. And I remember being so stressed out because there's all these parents there that essentially I do know them, but I did not have the mental capacity to remember their names And as we're sitting there, you know, we're there for hours and we're there the whole weekend. I literally could not think of one single thing to say to like open up a conversation. I was completely blank. And that happens to me a lot now. And that was never, ever something that I dealt with before.

Even thinking about something to say, oh, what do I talk to this person about? You know, I never thought about that ever. Words just came out. And who knows if it was important or not, you know, who knows if it was interesting or not, but it just didn't take effort. It was effortless. And now it takes energy, which is so valuable to us these days.

Yeah.

So let me go over a couple definitions. Again, we're going to be quoting from Over My Head, written by Claudia Osborn, and it was just so huge for me. I am a highlighter, and when I read this book, I think I highlighted 3/4 of the book because she was saying everything I had dealt with for really a decade as I began to deal with all these cognitive issues. But I want to lay out two definitions. One is a cognitive impairment, and for me, I still struggle when I get tired. Now I get tired cognitively, not physically, which I'm thankful for. I've crossed that hurdle. But let me just give you a definition of cognitive impairment. It says cognitive impairments can include changes in thinking and reasoning skill and diminished learning ability. Varying degrees of problems may exist in long and short-term memory, attention, concentration, communication skills, planning, problem-solving, and abstract reasoning. Including emotional and behavioral impairments.

That's a lot of things.

I know, like all of life.

Yes, pretty much everything we need every day.

And I remember reading that definition. I mean, I understood what cognitive impairment was on like a very surface level, but when I read that definition, I felt like she was articulating everything I had struggled with for years and years, especially as a mom. I'm like, I, I don't know how to manage a household anymore. And, you know, my mom, your mom, our mom would come over and, you know, through years we had to get to this place where she understood that I was not capable in the ways I used to be. You know, I never needed help with things beforehand, and now we had to come to this place where she would come over and say, okay, do this next. Let's go through this closet, or let's take out all their summer clothes to get ready for fall. But I needed her to guide me because I couldn't figure it out.

Yeah, I've had a similar experience with my husband Mike. Uh, he's been a sweetheart because there's been times where I just let him know, you know, today I mentally cannot make any more decisions. I just need you to tell me what we should do about, you know, X, Y, and Z, because I've met my capacity. So it's either I've run out of answers and I can't make a good answer because I can't think about everything that's involved, or it's almost as if my brain didn't show up that day and I just can't even go there. I can't you know, reason properly and I can't prioritize. And sometimes I get frozen in that. And he's helped me where, you know, I'll just say, I'm really struggling today. Could you please make this decision for me? And he likes to make decisions. So that works out well. You know, just it's a complete lack of, in my brain, organization. It's like, oh my goodness, there's all these things and I just can't put them in order and I can't prioritize and think about them properly right now. So I just freeze up.

Yeah. Well, and that leads us right into executive function. And the definition of executive function is the ability to organize thoughts and work, to create plans and successfully execute them, to manage the administrative functions of one's life. For me, you know, when you have 5 kids asking you questions, I was very much in the same boat where one of the kids would say, can I go to so-and-so's house at 10 o'clock? And for me, even if I said yes, I didn't know how that would affect the rest of my day. And so if I felt okay and I had brain function, it was not a big deal. But if something happened and I lost that brain function, or I had to make too many decisions and/or I was stressed about it, I just couldn't plan my life.

Yeah. And don't you think, Sarah, that when that happens sometimes, you know, or if that happens a lot, I think for both of us, but when you have a day where your brain shows up on time and you have an energetic day and your cognitive function feels more clear. And, you know, you just kind of conquer that day one task at a time and you feel so great, which I think is awesome. And I think that we've needed those breaks for sure. But it also would bring to my attention how awesome I could be when I am functioning properly. And in a way, it would also make me more sad because I would feel like, why can't more days— why can't I kick butt like this, you know, 6 days this week instead of 1? You know, what was different about today than yesterday? And, you know, I've even played that game. How much water did I drink and what am I eating and how much am I exercising and just trying to break it down and figure it out when really All that stuff is helpful, but not necessarily the answer.

Yeah. Well, and even, I mean, we were supposed to record this interview at the beginning of the week and I texted you and on Monday I just didn't feel like my brain was on well.

And you actually reminded me that we were going to be recording. And so your cancellation reminded me that it was happening. So we're kind of We're two peas in a pod. But I guess it's not so bad if we take turns. As long as one of us is on our game, we'll be okay.

I know our sister Jenny always says, like, someone should be in charge of me.

Who's supposed to be watching you today?

Yeah. It's not good that I'm in charge here. Like, I really need supervision. So one of the things that you and I have just talked about is that very thing, the day-to-day struggle. The struggle is real when your brain is not working. The struggles are constant. They do not go away. And one of the sources of grief for me, and I know for you as well, has been that you put forth so much effort to do basic tasks and you have very little to show for it.

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I have a good example of that through school, if you'd like me to share that. So I'm attending college right now to finish my bachelor's degree, and I started a long time ago. I started actually 6 months after my accident because I was 23 years old and I was terrified that I couldn't read. And I was told the best way to get your brain functioning again is to use it. And I also knew that I wanted to go back to school at some point. So it kind of felt like the right time. So it's been a constant struggle for me to succeed in my classes and do well because I have a hard time studying. For a couple of years, you know, I couldn't take tests with multiple choice questions because I couldn't remember the question long enough to read through the options that I had to choose from. So you could see how that wouldn't work out well. And if I had to read a book, you know, it was basically telling me to do something impossible. You know, it's, oh, you read chapter 12 by next Tuesday. I'm like, oh boy, I don't have time. I don't, you know, it would take me a year to read a chapter at this point. And so while attending school, you know, I'm taking intro-level courses just to finish up my bachelor's degree. And I had one specific statistics class and it's intro to statistics. Doesn't seem— statistics are rough, but it doesn't seem too bad, you know. And I ended up taking it 3 times. In order to pass it. And I had never tried so hard in a class before. And this is a shift in my ability as well, because growing up when I was in high school and the first time I attended college before my accident, I wouldn't try very hard and I would do well. I was not a committed student. I know it's not the way to go, but that's the truth. I didn't put forth very much effort and I did well. And so I always got by. And now after the accident, when I was going to school, I was putting forth every bit of my effort and I was trying so hard and I was failing. And it's just heartbreaking because I felt like school was the right choice for me because it did challenge my brain in such a different way than work does. And, you know, I wanted to continue to improve my reading skills and memory and speech and everything like that. So I wanted to continue. I knew that it was the right move for me, but it was so incredibly discouraging when I was trying so hard and not even passing. It didn't make sense to me. And, you know, I've— over the years, I've figured out new study techniques. I've had to put in I was 100% as a student and 100% before my accident. So I'm expecting to put in the same amount of effort that I put in before my accident, after my accident, except I couldn't pass that way. I wasn't, I really, I truly had to be a 100% student in order to pass. Not even succeed, you know, with all A's. It can be such a discouraging path because you're trying so hard and you're putting so much effort and energy into something. And, you know, that messes with my confidence because I feel like I can't even pass this intro level class. You know, how am I supposed to X, Y, and Z. You know, how am I supposed to conquer the world of Stephanie when I can't even pass this intro class? So I eventually passed it and I got a B. However, when I was finished, once I did pass, it was very challenging to celebrate that success because in my mind I felt like it wasn't a success. It was something that was really, really hard. And I had to take it 3 times and it wasted my time. And it wasn't even an actual success is how I thought of it for a while. My thought process is different these days and I'll take a B any day. But, but it's hard, especially, you know, my husband's giving me a high five and taking me out for dinner because I passed my class. For the third time, or on the third time with a B, you know. And in my mind, I think nobody even cares about this class except for me. And it took a year and a half for me to pass. And so then you kind of domino effect into how much longer things are taking me than they used to and how much more effort I have to put in one single thing.. And it's hard not to think about, oh gosh, what if I had good energy like I used to? Just think of all the success I would have right now or think of all the things I would have accomplished by now. I think that's a, that's a hard thing to accept is taking the time to celebrate those wins that don't actually feel like wins. They feel almost like participation. Ribbons.

It is. It's hard. It's hard. I mean, you and I have talked about, like, even for me, as I'm recovering and I'm able to do more events in one day and think through things and care for myself, care for myself and the kids, I've said, I'm like, there's no balloons falling from the sky when for the first time in X number of years you don't have to go back to bed that day. You're finally existing in the world that everyone else already lives in. And it is really hard to be like, oh yeah, this is a huge win for me. And it is, but it's a huge win in comparison to all the huge losses. And that's a totally different mindset that you have to adapt and say yes, like, okay, it did take me 3 times to pass that class, but I didn't give up. And that's huge.

Yeah. Well, and when that happened with my statistics class, I felt like when it was over, instead of celebrating, I just thought, ugh, that was so hard and took way too much energy. What's next? And in that moment, I felt like I could see my entire life playing out that way. You know, if I were to get my master's degree, even if I got my PhD, you know, at the end of getting that, I didn't want to say, 'Ugh, that was hard. What's next? That took way too much energy.' You know, it wasn't until around that time that I really wanted to learn how to shift some of my thought process into celebrating those wins, because in my situation, they are the wins and they are the enjoyment and they are pieces of joy that I felt like I was missing. And that's because I wasn't celebrating those little joys that you celebrate all the time because it felt like it was too hard to get that win. You know, that win was way too hard. So I'm just frustrated with it and I'm done with it.

Yeah.

Okay.

So let's talk about transitions. And this is another thing that healthy people do not comprehend. I don't know, maybe I'm generalizing. I never comprehended it as a healthy person, and as I've described it to people, they kind of look at me like, I have no idea what you're talking about. But transitions from one event to another, or from one type of work to another, or from studying for class to turning in or meeting a deadline at work— each one of those things requires a mental cognitive transition, and for me, it continues to get better year after year, but I only had a limited number of transitions in my brain in a certain period of time. And I read about this— our two youngest kids are adopted from Ethiopia, and so I did a ton of reading and research and training on, you know, the brain and the brain after trauma, or the brain after living in an institution. And so I understood that kids who had experienced trauma and neglect can have a hard time transitioning. But when we brought them home, we went through 2 or 3 years where if we went to church that morning, they could not then go into a restaurant and have lunch. That was too much for them. And we knew that, and we understood that, and we set up our homes so that they didn't have to have very many transitions. But for myself, you know, I'm trying to keep myself alive and putting effort into that, and then I'm transitioning into being a mom because people are asking me millions of questions. So let's just talk about transitions because they're— it's hard to articulate that cognitive fatigue. It's hard to experience, and it's also hard to articulate to someone the stress that you feel while doing a basic task?

I have two pretty good examples for that, I think. So while going to school, I typically take 3 or 4 weeks to adjust to a new schedule, which I think is pretty normal as far as adjusting to new schedule, but also the amount of energy that it takes to just know that assignments are going to be due and putting enough time and effort into my school just takes a toll on me. I feel like it's just extra, extra weight, which I think people without head trauma deal with the same thing. I just feel like it's very wearing on my everyday emotions. So even, you know, making dinner turns into a more difficult task because I'm going to be reading afterwards before I go to bed. And I think of all these things that I have to do. It's very hard for me to take one day at a time, start to snowball into responsibilities or things that I need to take care of. And so I feel like sometimes now I almost count on having a 3-week, 4-week transition period into the semester. And then something that I've learned about myself is I do put a lot of energy and effort into that semester, and it takes a lot of brain power and energy and sometimes tears. So whenever my semester ends, because I basically feel like I've been on for the entire semester, you know, if somebody goes to a business meeting or a social event and they're not a social person, they have to be on during that time. And for me, I feel like during the entire semester I'm on, whether I'm at school or at home or at work. Work or doing nothing or having fun. I'm just on. It's an additional weight that you have to take care of. And so I feel like whenever the semester is over, I don't have to be on anymore, at least for a few days. And it's almost like I crumble emotionally because I'm exhausted and I'm not productive for a few days. I feel like it just wipes me out. I feel emotionally, mentally fatigued for those few days, and I'm better at dealing with those days and just letting them be because I realize now how much energy it takes to be on for a 16-week semester, and especially for me to do well because it takes a lot of extra studying and repeat studying to make it work. So I feel like that downtime when I'm allowed to be off, it's just normal now. At the end of my semester, I basically expect it because that's been pretty consistent throughout all of my semesters.

Yeah.

And in a way, I feel like it's almost a boundary you've created because I, I deal in the exact same way whenever anything ends, whether it's a kid's soccer season or school or my own projects, anytime anything is on, it— I carry it as a weight. And earlier in this year, I had done a speaking gig for Dr. Jay Davidson, who did the online Chronic Lyme Disease Summit, which is really awesome. I was super excited to be asked to be a part of that, and he had asked me about 3 months before the recording. And I told Aaron, I said, I don't know if I can commit to this because in committing to it, I will be thinking about it for the next 3 months because I have to prepare way beyond what I ever would have thought I ever had to do. I have to go over information, and it does— like, every decision, everything that I do impacts me in a way that creates a weight.

Well, here's my other example, Sarah, is whenever I go on a trip— I don't travel well anymore. I didn't understand it for the longest time, but it's because the week leading up to my trip, let's say it's a 3-day weekend when I come to visit you guys in New Mexico, it's gonna be for fun. I can— I'm gonna go and stay at mom and dad's house. No responsibility. I'm just there to hang out with everybody. It's all good. If I forget something, I can borrow it, I can buy it. There's no stress related to this 3-day weekend trip. However, on Monday, I'm already thinking about packing my bag, doing my laundry, which I know a lot of people will think, well, those are regular things. People need to pack their bag and people need to do their laundry and stuff like that. It's just this next level of anxiety, wondering if you're going to have enough energy to do that and or to do all of those things. And then if I don't accomplish those things before I need to go, I just— there's a piece of me that feels like I'm failing. I had all week to do these things and all this stuff. And I sometimes talk to myself as if I don't have head trauma, as if I'm not dealing with these cognitive issues or fatigue issues. It's almost like, okay, well, a regular person without this might have been able to accomplish all those things, but maybe not. And so on that day, I'm leaving for my relaxing, fun family time. 3-day weekend and I'm stressed. I'm at a 12, you know, and I'm thinking I'm going to have fun. I'm going to have fun and relax. And yet my anxiety is just dialed up and I'm already thinking about, am I going to be tired on Monday morning because my flight gets in at 10:30? I haven't even had my fun 3-day weekend yet, and I'm already worried about my fatigue levels for Monday morning. And it just— so many times I've told myself, this is fun. I'm going to do something fun. Why do I feel so stressed out? And, you know, fatigue, so many things, so many factors go into why I'm feeling that way. But you also feel like you should be able to, you know, go on a 3-day weekend trip to see your mom and your family without it being stressful. So it's— can be very confusing.

Yeah, and that is a perfect segue into our last talking point, and that's just the dysfunction. Making sense of the dysfunction. And you and I have had this conversation for years. Things that used to be fun or are fun that you're excited about still tax your body in an abnormal way. And you do. If you are dealing with long-term fatigue and long-term cognitive fatigue, every decision, every event weighs on you whether you want it to or not. And I do the same stuff. I'm like, okay, I have to actually plan every aspect of my life. Okay, on this day I'm going to do laundry, and on this day I'm going to do this, because if I don't plan it out, I don't even think, like, I don't even realize I skipped it. And I get to the end of the week and I'm like, oh my gosh, no one has clean clothes. Or, you know, but even just the process of delegating those tasks to the kids is hard for me sometimes.

Yeah. Well, and you have to know what all of those things are in order to delegate it. So you may not even be recognizing that as something to delegate to them. So there's that too, you know, and don't always recognize that upfront.

Yeah. So as we close here, Steph, tell us about just the process for you that you had to go through in deciding, you know, one of the big major stressors with long-term illnesses is the constantly going to the doctor, realizing the doctors you're seeing maybe can offer treatment, but maybe really can't, and you're still left to like hash out all the details on your own. And I know you experienced that in going into different physicians and saying, gosh, you know, my brain isn't working right. You know, my eyesight has changed and all these aspects and just coming to the realization that it's costing you time, energy, and money to not get very far.

Well, and I had numerous doctor's appointments, you know, with the neurologist. I saw an eye doctor, I saw a urologist, I had many different ailments that I was trying to pinpoint, and I'll give you an example. You know, the neurologist basically said, I can give you some medicine, or you can just wait, wait it out. And that wasn't very helpful. And then I went to an eye doctor because I couldn't see very well, and it was definitely worse if I was tired. And they said that my eyes were fine, my eyes were perfectly fine, and I would tell them, well, why can't I read that sign over there? They said that my, my eyes were receiving the information okay and my brain was basically scrambling it and spitting it back out, but they didn't have a prescription of glasses for brain damage, in a way. So It was kind of like, well, sorry, you know, then I would tell them about my accident and they would kind of just shrug their shoulders and say, oh, you know, well, that's too bad kind of thing. And I'm like, what do you mean that's too bad? Somebody needs to help me. I went through a phase where, you know, my bladder would only empty halfway. So I would go to the bathroom and I'd get up and I'd have to go to the bathroom again. And they couldn't figure out, they said, You know, well, your bladder, you know, responds when the brain tells it to, and your brain's not responding properly.

Because that's a neurological issue.

Oh yeah. And I even had a phase, I had a large amount of body twitches, I guess you could call it. So for example, I'd be holding my pen and my fingers would just kind of basically flick my pen across the room, you know, and I would have these muscle twitches that were very strange and sporadic. And they said, well, somebody— honestly, I don't even remember who gave me this analogy, but I use it all the time. It's a great example of what's going on in my brain. They said, if you could picture an ant farm with all the sand and all the ants, just picture your brain as that ant farm. And somebody comes over and shakes that ant farm. Okay. All the stuff that was in that ant farm is still in there. It's just a little messed up. It's just in different places. And so if there was an ant who would go from point A to point B to point C to go to the restroom or to write your name without throwing your pen off the table, point A and point B and point C still exist. But that ant might have to go from point A to point B to point F to point C in order to accomplish the same thing that it used to accomplish with just the 3 points. And so I just— of all the things, that's one that I remembered because I thought, you know what, it's still in there. It just takes longer. You know, maybe it has 6 points 6 stopping points before it can accomplish that task instead of 3. And I've thought about that with a lot of different things that I've struggled with because I feel like it's in there. It just doesn't necessarily pull forward. I saw many different doctors. I saw a few different therapists, and some were very helpful with my emotional health. Some were not helpful at all. I once saw a psychologist who said, well, you seem a lot better off than most people with head trauma. So what are you doing here kind of thing? And, you know, a lot of times I hear people say, well, gosh, you don't look like you have an injury or you don't behave as if you have a head injury. And although they were trying to relate with me and be kind, Sometimes that was some of the most frustrating words that I could hear because I thought, you know, here I'm searching for these answers with all these different types of doctors. You know, I would pick an ailment and go see that doctor and see what they had to say. And it was almost as if once they heard about my head injury, kind of stopped them in their tracks and they didn't really have anything for me. You know, and then you have just regular people, not necessarily doctors, And they say, well, gosh, you seem like you're doing fine. And I'm like, well, everybody, I'm not doing fine. You know, this is so frustrating because it's something that I think about either ailments, cognitive dysfunction, memory loss, you know, vision issues, muscle spasms, whatever it might be. It's every day, all the time. And I'm thinking, I've been thinking about this since the day it happened. In different forms, but it continues to be on my mind every day. And it's been a struggle. So even for people to acknowledge or talk about their head injury in a book or in a story, I feel like I've just found such comfort in that because I feel like I can't imagine the journeys they've been on to try and, and find help. Themselves because, you know, it's been hard.

Yeah. Well, thank you. Thank you for sharing your journey. And there's just so many similarities. And I think for those of you listening out there, you know, it is hard to communicate to your family and friends what's going on, and not everyone understands a concussion. But I felt like when I read that book Over My Head, it just made me realize— I understood I had brain damage, but it made me realize on a whole nother level that, you know, I was really fighting this uphill battle that no one saw. And I at least have some type of a diagnosis at this point. And Steph, you really are in that completely invisible disability category because you look so good.

Yeah. And, you know, Sarah, reading books and seeing documentaries and stuff is all really great. And, you know, it's— I feel like it's very helpful. It's just encouraging. But I feel like you've been a huge blessing for me because even though we have completely different diagnosis, we have different issues, and yet they show themselves in the same way. And I feel like we've been able to communicate that to each other through our stories and through our struggles. And I know for me, it's been a huge blessing just to hear, you know, some of the struggles that you've had, because I can sit there and say, I know exactly what you mean. And I really do, because through this head injury and your Lyme, it's just a lot of the, the loss and anxiety that's felt through those issues seem to be very similar.

Yeah, well said.

We'll end on that. Okay, well, thanks for having me.

Wishing your doctors could communicate and come up with a cohesive plan specific to your medical needs and genetics? At Invita Medical Center, they offer a team-style approach, giving you the opportunity to heal. In addition to a commitment of providing radical love and care for their patients, they are strategically located in sunny Arizona because Arizona offers the best integrative medical laws in the country. Call today to speak with one of their patient care coordinators. You can find them online at invita.com.

Disease is contrary to life. Therefore, wherever disease exists, life must also fight to exist.

Good job fighting, Lyme fighters! Keep it up. We'll see you next time.

LymeVoice contains general information about medical conditions and treatments. The information is not advice and should not be treated as such. 'Kay, Lincoln? 'Kay. The medical information on LymeVoice is provided as is without any representations warranties, expressed or implied.

Okay?

Okay. LionVoice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare healthcare provider. And for you, you consult your parents.

Okay? Okay.

If you think you may be suffering from any medical condition, you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this podcast. Got it, Lincoln?

Got it.