045 Recovering From Grief And PTSD from Chronic Lyme Disease

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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LineVoice thanks Invita Medical for their continued support. Please reach them at 1-866-830-4576. Welcome to Lime Voice, where fighting is a mindset, healing consists of choices, and living is the outcome. So glad to have you all here with us. We are really excited about, about this week's episode.

I say that every week, I think.

Do we?

I do, but it's true.

They're all good.

Uh, we're talking about grief and PTSD, and we have my sister Stephanie back. 8 years ago, she has lived for 8 years with a traumatic brain injury, so a lot of short-term memory loss, extreme fatigue, and then a lot of anxiety, which is exactly the same stuff I dealt with with neurological Lyme. And she just shines a light on it in a really powerful way, and I'm so excited to bring it to you. She says in the interview that— she says PTSD is messy and powerful.

Yeah.

And I was like, yep, that's it. And she also shines some light on just the struggle to heal, like how much effort you have to put in to heal emotionally.

And emotional healing is very, very important for your physical healing. If your mind is not ready to take on the day, your body is going to follow suit. So this is a really important topic. I know firsthand from watching Sarah go through it, and when Mama's not happy, nobody's happy. And so this is, this is really important. One of the things that helped you through your PTSD is your book, Little Bite, Big Trouble.

Yeah, the book and the blogs. But yeah, specifically the book came out of a conscious decision. I just decided I'm not going to cry myself to sleep anymore. Yeah. And because there's so many losses that span so many years, and Little Bite, Big Trouble was one of the things that came out of that.

Yeah. If you want to see that book, we have it for sale at Lime Voice, and you can look us up there. There's a link on it in the books and products page. Uh, also you can just search that, Little Bite Big Trouble, on Amazon and buy it directly off of there. Be shipped with—

and with—

to you within a couple of days.

Yeah, and that's a way to support Lime Voice. If you want to come alongside us, we are looking for a few partners that will come alongside us on a monthly basis.

No one will be turned away.

Uh, we have a ton of great content that we're going to be continuing to bring you guys, and we also have some projects that we're working on, and one of those is filing for not-for-profit status. So if you are in a position where you can come alongside us, get in touch with us.

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Welcome, Lime Voice listeners. Thank you so much for joining us today. I am here again with my sister Stephanie, and many of you have probably already listened to the prior episode that we did with her just talking about the similarities between Lyme brain, Lyme fog, and concussions. And really, that's a great segue into the discussion of PTSD. And we have said it on every single episode, when you are dealing with the longevity of Lyme, the longevity of a chronic illness, there is loss on so many levels. And for me, I felt like I was processing those losses as the years unfolded. But I know that I really, I probably was processing to the best of my ability, but it wasn't until I was safe. When I was out at treatment center, out at the treatment center and Vita Medical, I remember it was probably about 2 weeks into treatment and they had said, "Hey, it'd be really good for you to meet with a therapist or a pastor." you know, kind of work through some of these things. And I thought, you know, I've been working through them for a long time. This has gone on for over a decade. And yet when I finally realized a couple weeks into treatment that I was not going to die, I understood that, and that really every year of my adult life had been tainted by Lyme, by fatigue, by pain. I remember it was just like this dam broke inside of me, and I wept for days. I not stop.

My poor dad was taking care of me at the time, didn't know what to do.

I remember him just like patting my head on the car ride home from treatment, like, I don't know what to do for you. And I'm like, I, I don't know what to do either. But Stephanie and I, even though we have different circumstances— she was involved in an automobile accident and went through a concussion and bruising on 3 parts, 3 sides of her brain— and our realities have been so intertwined and so Steph, thank you so much for coming back to talk to us.

Definitely. Thank you for having me.

Yeah. So Stephanie has a really unique perspective because one, she's about to enter grad school for psychology and she has watched me go through all of my stuff. She has experienced her own long-term invisible disability and the topic of PTSD has come up for us in so many conversations.

Yeah, we've definitely shared stories, swapped stories about different types of loss that we've experienced due to you having Lyme and me having a head trauma, that's for sure.

And I remember you talking for years, you know, as you were, you know, trying to— as you had different issues and long-term issues, and you would go to a physician and say, okay, I'm still dealing with this, my personality is altered, my mood is altered, and really they didn't have anything to offer you. And then in the next couple of weeks, you are then getting billed for all these things. And so it costs you time, energy, and money that you did not want to put into it.

And there was a long period of time, I'd say about 8 or 9 months, that I didn't see anyone for anything, even if, you know, no matter what was going on, I just refused to go to another pointless doctor's appointment and pay too much for it with no solutions. Yeah.

And yet what I kind of saw you go through was years into this new reality, new life, living with impairments. I saw you embrace it on a different level. And that's what I want you to talk about in the sense of I remember you just saying like, I don't want to take a day off from work and drive and go see this therapist who may or may not be able to help me and it's going to cost me $200. But something happened for you where you said, okay, I'm gonna try this again.

Yeah, you get desperate sometimes, um, and I, I feel like that's exactly what happened. So it's been now, it's been 9 years, over 9 years since my accident, and it wasn't until I'd say 7 years in before I decided that I was gonna go see a therapist for a while because, you know, I had seen a few therapists just 1 or 2 times in the past and they definitely weren't the ones for me. I know that, you know, some therapists mesh with other people, with some people better than others. I even saw one psychologist who was specifically trained in dealing with people with head trauma and I just didn't feel like I was ready to share. I didn't feel like I had the ability to articulate all the thoughts that I was having. I knew that something wasn't right. I just didn't know how to explain it in a way that, you know, someone else would help me feel better. And I'll elaborate on that a little bit more, but I felt like I was at a point 7 years after my accident that mentally I could— I was going to school, I could spend more time reading. I could challenge my brain. I had little apps on my phone that would have different games, sometimes as simple as the memory game that little kids play where you flip over the cards and you match them. You know, so the mental aspect, I felt like I was improving. And over the 7 years, I had seen a major improvement. And even though certain areas are still lacking, I still feel like I'm on the— you know, I'm still improving. So I'm like, okay, I have the mental part down. Any physical ailments that I had from my accident were, were gone at that point. And, you know, I could exercise and I always felt a little bit better when I exercise a little more often. Spiritually, you know, I feel like I could pray, I could spend more time with the Lord. That part was up to me. And so mentally, physically, spiritually, I felt like I had those under control. Those spokes were under control. And the one part that I just got fed up with and desperate for help was the emotional side. Because, you know, through my accident, and I know me and you have talked about this, Sarah, where we felt a sadness deeper than any sadness we've ever felt in any other situation. And, you know, we've lost family members in the past, and that is very sad. It's, you know, heart heavy. Sad thing. And I felt like an experience like that didn't have anything on the deep sadness that I felt after my accident. And, you know, for me, it kicked in just a couple of weeks after my accident. I just started sobbing one day. And my husband— boyfriend at the time, but he had asked me what, you know, why I was sad. And I didn't— I couldn't even explain why, but I couldn't even explain the depth of sadness that I felt. And I feel like that just carried on through the years and it built from different angles. So I would be sad because I was sad and I would be sad because I struggled and I would be sad because it was so hard to learn new things and it was so hard to prepare for a fun event. And I feel like I just needed a different perspective. And I needed help reining in the emotional side of all the loss that I had felt since my accident. And it wouldn't hurt to give someone else my story besides my poor husband and my sister, because they definitely got my stories quite often. But, you know, I, I ended up finding a therapist that I went to and I was just bursting at the seams. I feel like my first appointment with her, I cried and I saw and talked the whole time. I don't even know if she said anything during that first session. And by my third session, you know, she says— she told me that my diagnosis was post-traumatic stress disorder. And I was just so thankful for that diagnosis because, you know, I felt like I had all this stuff that I was dealing with, and I'm high-functioning, you know, I go to work every day and I'm okay, you know, but I felt like I just fought for every moment up to that point. And I really went to her just hoping that I could get some balance through my emotions and then also just share my story completely with somebody and, you know, get their different perspective on what they thought.

Yeah. And I remember you going into those sessions and, and I understood, you know, during those initial years why you didn't want to go into those sessions. You know, it was taking from you on a level that you didn't have to give at the moment. But then, I don't know, I just— I felt like what I saw you do was just kind of take control over the illness. And, you know, one of the things you and I have talked about is part of the sorrow and loss of these long-term issues is, again, like we've said, you have very little to show for it, but you have also had to fight for so many tiny little moments. You know, you have to fight to be joyful and happy. And some people don't like the word fight. Some people talk about Lyme and traumatic things as if it's like this journey of transformation and this like higher sense of enlightenment. And I understand that. But every single step I have taken, I have had to fight for. And there has been immense loss financially, spiritually, physically, emotionally, and You know, I understood those years when you were like, they're not helping me. I'm having to take time off of work. I don't want to just sit there and cry. And, and yet then I saw you kind of say almost in the sense of like, because I don't want this thing to keep impacting me, I'm going to allocate one afternoon a week where I can go and talk to someone who knows what is going on.

Well, and it's challenging to spend the money to go talk to somebody about something that I don't want to talk about. And it's very challenging. You know, even I would see her sometimes. I wouldn't even understand my full thought process when I was there with her. Sometimes it would be 3, 4 days later, you know, and I would just be chewing on some of the things she wanted me to think about. And a few days later, you know, I'm like, oh, wow, you know, and I felt like it was nice to have a different perspective. But also, I had a lot of aha moments with her. And, you know, if you don't mind, I'd like to give you two different examples.

No, please.

Okay. So, you know, I went in there thinking, you know, I should be able to pick myself up by my bootstraps and keep going. And up to that point, I had really dealt with it the best that I could. I thought, okay, well, I'm, you know, I'm going to work and I'm going to school and, you know, I can exercise and I can read more and challenge my brain. And I'm going through the the list of all these things that I could do for myself. And I felt like, you know, I'm giving it a good go. I'm really trying to the best of my ability to get through this. But I kept ending up in the same spot. And when I would have almost like a domino effect of emotions, you know, because you get derailed quite easily, I just felt like, gosh, this shouldn't be this hard. And I shouldn't, you know, it was definitely two steps forward, three steps back is how it felt. And, you You know, sometimes one step forward and two steps back. Okay, this isn't working. So two things that were pretty huge when I was seeing her is, you know, she said, you know, I thought, why can't I just get through this? I should be able to deal with this. You know, I deal with everything else. I should be able to make the decision and walk myself out of this horrible situation.

Right.

And, you know, like, here I am, 7 years later, I'm still thinking about it all the time. And it just drives me crazy. It makes me sad. So she said, okay, you know, what if you and your husband were sitting on a park bench? And I love analogies. So I'm like, okay, like me and my husband are sitting on a park bench. And she said, what if somebody comes and shoots him, shoots him dead? And I'm like, oh my goodness, that would be horrible. And she said, that would be traumatic, right? And I said, yeah, that would be really traumatic. And I'm kind of chuckling just 'cause I do that a lot. And I'm like, yeah, that would be terrible. And she says, And then 7 years from that time, if you came to see me, do you think it would be ridiculous if you were still having a hard time with that? And I thought, no, that would be horrible. And if I had a trauma, if I had, you know, that traumatic event of my husband being shot in front of me, you know, and I was still having trouble with it 7 years later, to me in my mind, that would be perfectly normal.

Right.

And so I was also able to recognize that I wasn't giving myself the grace that I give others in their stories and in their lives because I thought, oh my goodness, well, that would be so traumatic. And she said, yeah, so is a head injury. So it's a traumatic brain injury. Traumatic is in, in the description, you know. And so that's just one aha moment that I had with her and just trying to figure out how to continue to give myself more grace. Right. So another example is, you know, when I was chatting with her and just talking about some of my struggles and gosh, it's hard. And, you know, I said, well, what do I do, just give up? And she said, yeah, people give up all the time. And giving up had never really popped in my mind because it wasn't in my thought process at all. I felt like I was fighting for every moment. I was fighting to get better and, you know, fighting for mental, physical, spiritual, emotional health. And I was fighting every single moment up to that point for 7 years and didn't think about giving up because I'm the advocate for myself. No one else is going to fight for me. People can fight alongside you and with you. But if I'm not willing to fight myself, then, you know, no one's going to do that for me. And it's kind of— I don't know, it was just eye-opening for me because she was surprised that I thought that I didn't think other people quit. And I thought, well, isn't everyone who has a traumatic brain injury or chronic illness, isn't everyone trying to fight to be better, to be healthier, to get over this situation? And she was like, no, it's great that you're fighting. And, you know, the reason I went to see her in the first place is because I needed help. I needed some guidance to change my perspective and help me grow on the emotional side. And I felt like all the other pieces, all the other spokes in my wheel, I could adjust myself. But I felt like at a certain point I wasn't making improvements on the emotional side. And that's why I needed a different perspective.

Wow. Well, and I remember you telling me that she had said that, and we have talked about this, that it is a lot easier to give other people grace because their issues don't affect your life. You know, that's right. If they don't pursue a promotion or graduate degree, or if those people aren't fighting day in and day out, those are their choices. But for you, I remember you realizing, because you were talking about having to take multiple classes over again and just the sorrow of losing that time and the money and the resources that went into taking classes over and over again for college to finish a degree that you had wished you had been able to finish years ago. And yet we, and I am in the same boat, I often don't give myself that grace to say, you know what, I've been fighting really, really hard to the best of my ability.

Yeah, and even, even figuring out how to adapt to changes that come down the line. For example, you know, I've had a lot of anxiety that I didn't have before the accident. And a lot of the anxiety I created because I would forget so many things because I had short-term memory issues. And so if I was anxious about something, it would help me remember.

Yeah.

And as time has gone on and I have more energy and I have less short-term memory issues and cognitive— my cognitive function is improving. Now I look at it from a perspective of, okay, I don't have to be anxious about this. I can remember this. Or if I have certain notifications to remind me or sticky notes or calendar, you know, put it on my calendar and stuff like that. I've figured out different ways to help eliminate some of that anxiety because for a couple of years I felt like I still had the same amount of anxiety about everyday things, even though I had already gained organization and, you know, more memory. And so as I was improving, that anxiety still existed at the same level. And I just, I just couldn't function at that level. That high level of anxiety all the time because it just wears you out. And so even having— being willing to change some of those behaviors that maybe you didn't have before, in my case, before my accident, right? Because I don't have to be anxious about something in order to remember it. I have new processes that work for me, so I try to fulfill those processes and, you know, let go of some of that anxiety. But it definitely— I've created a lot of patterns functioning in this brain injury that now that some of that stuff is improving over time, I'm having to change some of my behaviors. And it's challenging because I don't always recognize those behaviors and why I've created some of those thought processes.

Right. And I have used this example many times, but it's so relevant because I had so many short-term memory memory issues. Like, if I was making lunch or making a sandwich or something for one of the kids or myself, I would leave the refrigerator door open because if I didn't, I would forget that the food was on the counter and needed to be put away. And Aaron would come in and be like, why is the fridge door always open? And I would be like, oh, I was gonna do something, but like, I could barely articulate to him why I needed the fridge door to remain open. And again, I created all always what I called like modifications or kind of like a net to catch myself when my memory failed. And again, learn to set notifications and live by my calendar and do all these things. But I mean, one of the reasons I never answered my phone is because if I was like in a store shopping and someone called, I could— I would completely forget the call after I hung up. That call didn't exist. So if I committed to do something or said something or needed to email something, It was gone. So I had to create all these new modes of operation because like for you, when you're 7 years into doing something, whether you consciously admit it or not, like that's the way you do something now. That's the way you cope with stress. That's the way you navigate things. And for me, I've had to unlearn all these dysfunctional patterns of behavior and I'm having to constantly tell myself it's okay, like you aren't in Yeah.

And you know the saying, "You don't know what you don't know." Yes. I love that personally because as the years have gone by, there's been so many things that I didn't know at that moment that, you know, the next year I say, "Oh my goodness, if I would have known that last year." And it's almost like I keep getting these, these aha moments or these improvements as time goes on. And I feel like I'm still waiting. Even today, I think, gosh, What will I know about myself in 2 years that I don't know right now? And it's like, I don't know what I don't know yet, but I'm so excited to hear what that is in 2 years because as I'm making progress, you know, I feel like I'm growing in so many different ways. And I feel like it's because of my efforts. It's because I've been putting the time and effort in. It's because I've been trying to become more aware of, you know, how I'm dealing with things and what my emotional responses are. And just, I don't know, does that make sense?

Yeah, it's almost like a higher level of consciousness as far as why you do what you do.

For nearly 2 decades, Invita Medical Center has been leading the way with the latest in personal specialized treatment options designed for patients dealing with Lyme disease complex. At Invita Medical Center, they offer a team-style approach and the latest technology regarding treatment and testing at an unmatched radical love and care environment for their patients. Call to speak to one of the patient care coordinators today to learn why hundreds of patients choose Invita Medical Center each You can find them online at invita.com.

From the creators of Line Voice and Disappearing from Society comes a brilliantly simple idea, but this time it comes as a book. Imagine a world In a world in which birds can talk like people, you'll get a bird's-eye view of life with Lyme disease as one bird family must unite to overcome the obstacles of life with Lyme disease. Guaranteed to make you laugh and cry. Written in a way that helps you articulate the losses you are experiencing as a household while simultaneously empowering empowering you to keep fighting. Little Bite, Big Trouble is available today at amazon.com.

Yeah, and even if you think back to when we were at Shea a few years ago, which is now called Invita.

Yes, Invita.

Um, okay, when we were at Invita years ago I thought that I was at the end point, you know, like I understood everything that had gone on with me and my head injury. And then I feel like the year after that, I learned so much more. I was so unaware of so many things that had been going on in my head. And with, you know, just, I don't know how to explain that any other way, but I just, I didn't know what I didn't know at the time. And I still feel like that's true today. I feel like I'll I'll still be figuring out the full scope of my head injury even as the years go by, 'cause I don't feel like I have the whole scope yet.

Well, and that makes sense. And so 4 years ago, I went out to Invita 4 years ago, and I'll just frame this conversation. There was like this discussion. We all sat with our IV poles in these big lounge chairs, and at different times we would get these huge discussions going with 5 to 10 different patients who were all dealing with all these same issues. And as we're talking really about the brain fatigue, the brain fog, and the chronic fatigue, Stephanie, who was there taking care of me, was like, hey, I have had chronic fatigue ever since my accident. And so she actually, while, while she was there taking care of me, went through, got her labs done, and they looked at all her labs and they actually gave her a set of supplements that she could take to help regulate hormones, to help battle the chronic fatigue. And so, um, in the documentary Disappearing from Society, there is a picture of me and Steph with IV poles getting our high-dose vitamin C, which was wonderful. Yes, but it is, and So fascinating because I remember when I was out there visiting you and Mike a couple years ago, we were talking about this and Michael, her husband, who's very thoughtful, he said, for you and Steph, everybody goes through these periods of self-discovery, right? We all go through periods of self-discovery and especially as we're hitting our mid-30s and heading into 40s, that's just kind of a time where you do have more perspective on things. But he said, the thing is, is you guys aren't just dealing with self-discovery, you're also dealing with recovery of yourselves. And I was like, yeah, and that makes it really complicated.

Yeah, because what is, what is 32-year-old Stephanie? I don't know. I'm still trying to figure that out, you know, while recovering from a head trauma and and figuring out what is head trauma and what is Stephanie, right? And what are they together? And how do they, how do they figure things out?

Yeah. So I want to talk about flooding. And one of the things that Steph and I have talked about over the years is, again, that awareness of something we're used to operating in certain ways, and sometimes to realize that the way you're operating maybe you can control it, maybe you can't. But in the book Over Our Head, or Over My Head, which huge aha moments for both Steph and I throughout that whole book in realizing that, that we do need to give ourselves grace because our brains are damaged and it affects your emotions and it affects your activity levels, that it just affects so many things. And I remember sitting in a restaurant with my girlfriends after coming back from treatment, and so for the first time in years I'm not in pain, and we're sitting in my favorite— one of my favorite restaurants, and there's like 6 of us, and everyone's hanging out and drinking margaritas. And I can like feel the sorrow literally washing around me. And they're talking about their kids, and one of my friends had just bought a new house, and they're talking about these things that I care about and are relevant. But the entire time, I'm sitting there trying not to burst into tears because I could just feel the, the sorrow and the loss creeping up on me because I don't own a house anymore. We don't go on family vacations because at that point we were treating 3 people for Lyme. And the losses are so massive, um, and I didn't understand at the time that that's what I was dealing with. So let me just read to you the definition of flooding, and then we'll talk about it. It says, flooding: overwhelmed by or awash in one's emotion. This can take place through the flooded— though the flooded individual does not appear upset or distracted or even consciously aware of being under an emotional overload. In a flood, thought processing slows and thinking Thinking, language skills, and actions may be severely impaired. Flooding may be triggered by external events, the need to make a decision or immediately solve a problem, or from internal pressure, the awareness of one's own confusion, a sense of helplessness, and the pain of one's loss of self. And when I read that definition, in the book, it just made sense for me on so many accounts where I was sitting there, I'm trying to be engaged, I want to be there, it's a fun thing or something that I would want to be a part of. And yet I had been functioning for so many years in a dysfunctional emotional state that I didn't even know how to cope with like normal things anymore.

Even fun things.

And I think like that's been one of the conversations that you and I have had over and over is just that sense of sorrow that can come at you and create a domino effect when you aren't even thinking about it.

It's almost like a— I mean, flooding is a perfect— it's the perfect name for it because it really just rushes in and takes over your entire thought process. And it's not even rational. It's just, it's messy and powerful. And I feel like it includes the domino effect. So you have one thing, say that you couldn't accomplish or, you know, didn't do well at that day. And then it just domino effects into the next thing and then the next thing. And even things that haven't even happened yet, you know, it rolls into your next Saturday event. And, you know, there's just a lot of of failure feelings, I think, when it comes to flooding, because none of it is positive. You know, when you're having trouble communicating, when you're having trouble making decisions, when you're having trouble interacting with others, when typically you enjoy doing that, it just, it's all kind of negative. So how are you supposed to come out of that with a positive attitude?

Yeah. And for me, like, I sometimes I would be sitting in that situation and something would happen that— and I mean, your brain is maladaptive. Everybody's brain responds to trauma and loss, um, and when those traumas and losses go on long term, it literally affects the size of your amygdala. And so your amygdala is designed to make you consciously aware of situations that you should be aware of, like fight or flight. And when you're in prolonged stress, which you are with brain injury, you are with chronic Lyme, as your brain is getting attacked, um, it changes the way your nervous system responds. And for me, what was so frustrating is here I'm trying to like put my life back in order, move beyond the losses, and sometimes things would unfold that affected me emotionally, but I couldn't even figure out what those were until like days later. I would just be so sad and tearful, and again, that feeling of failure in the sense of, I haven't, like, I don't understand what's going on in my own brain.

Yeah, and it, I feel like as the years have gone by, I've gotten better at recognizing when it's coming. Not always, but me and my husband will joke sometimes, you know, I'm like, I'm going down. And what's strange is when that happens, it's almost like there's no stopping it, even if you see it coming. I feel like when I see it coming, I can prepare and, and shorten the effects but can't have quite figured out how to dodge them and/or just deal with them and get them over with. It's almost like an inevitable, you know, that's why we're like, I'm going down.

Like, no, what the heck?

It's challenging. But yeah, so it's really frustrating, especially how are you supposed to stop something if you can't see it coming most of the time. Yeah, it's very confusing.

Yeah, that's true. I remember getting to a point a couple years back where like I could handle a couple of bumps. I would call them like a bump in the day, like, okay, this thing didn't go as planned and I was standing for an extra hour at a pediatrician appointment, or, and then so-and-so forgot their lunchbox and I need to drive it to the school. And so there, that's, that was another like bump in my day that I didn't anticipate. And I could handle 2 or 3 bumps in the road, but when I hit 4 or 5, it was inevitable that I just emotionally, like we had said, I had no more transitions left. I had no more reserves left. And then that in and of itself made me sad.

And then you're sad because you're sad. Right. And then you're even more sad because you're telling your sister that you're sad because you're sad. Yeah, and even having to learn how to function with giving yourself more wiggle room. So for example, I feel like when I wasn't doing well in school, I didn't give myself any wiggle room because before my accident, I didn't need wiggle room. And even if something happened, I would just deal with it. It's okay, I just roll with the punches. Fix the problem. Well, if I say, let's just say, 'cause this actually happened. Let's just say I forgot my homework and I was going to get half credit, you know, if I turned it in late. Well, that would have been fine before my accident when I didn't need every single point that I could get. And so it was one time I was on my way to class and we were going to have a test and there was a fire in the— out in the— I don't know what you call it out here. In New Mexico, we'd call it the mesa, but I don't know what they call it in California. So there was some fire in the middle of town and I was 20 minutes late. Well, as soon as I pull up into the parking lot, running in to get my— to take my test, realize I left my folder with my homework at my office. So I'm crying, you know, I call my husband, I don't have time to go get my homework, the office is going to be closed soon. All these things were going on and I just fell apart because it's like, I need every point I can get. Now I'm going to get half credit. I can't get half credit. I need every single point. Or I may not pass and I will have to take it again. You know, I can't afford this. I can't afford a forest fire on the way to school. You know, I can't afford— I can't roll with the punches right now. And just, I fall apart and I am just overwhelmed with anxiety. I'm overwhelmed with failure. I'm overwhelmed with why can't I just take care of this like I used to? And I've had to figure out how to cushion those things because I know I know now that I can't deal with those things in the same way that I used to. I can't, even though I want to, I can't roll with the punches as smoothly as I used to and I need more cushion. And so whatever that means for that event or task or schedule, I just have to think of it different than I used to.

So would that be within like a category of having bigger boundaries margins around everything in your life?

I think so, because, you know, I'm— I feel like I'll give myself 10 things that I want to accomplish tomorrow, and realistically, I might only be allowed— be able to accomplish 4 of those tasks if it's an excellent day, if my brain shows up, if I feel rested in the morning. You know, things need to fall in order for me to do, to accomplish those 4 things. And I've really had to adjust my expectations because what I'm capable of accomplishing now is just different than it used to be. And so I think, okay, well, let's say that I accomplished 3 of those 10 things. But in reality, if I had the best day ever, I would never be able to accomplish those 10 things, and I've just had to adjust it because when I don't accomplish those 10 things, I think about it, whereas before I just kind of rolled with the punches and it just rolled off my shoulder and I just did it another day, you know. I didn't feel like I was failing for not accomplishing those tasks. Does that make sense?

Yeah, totally. So let me ask you this. In the documentary that we did, Disappearing from Society, my friend Heather Getty is telling telling her story of her daughter, um, and they were going around the table talking about things that each person in the family was good at. And her daughter Rowan said, she said, Mom, you're really good at sleeping. And Heather says that, you know, that night she went into her room and she's like, dear God, please don't let my kids remember me as being good at sleeping. And the segue for in that documentary, I say, I don't know why there's so much shame with illness, but there is. And so let's just talk about that aspect, the aspect of shame, because I have— and I'm not coming out here as an expert— I have been digging into this for years. Why? Like, I impose— because I'm a mom, that's part of it— because I don't want this illness to define me and limit me any more than it has. I, I, I don't want to kind of give to the limitations. And yet I don't always understand why there's so much shame involved with not living up to my own expectations.

Well, yeah, and I, I think there's so many different angles, Sarah, that influence that thought because a lot of times with illnesses or with my car accident, you feel like you're a burden and whether that's— it can be a financial burden, burden. It can be an emotional burden. You know, it can be a physical burden in your family. And when you have those good days, when you're functioning at, let's just say, whatever your 100% is, when you're functioning at a high percent, you know how good you can do or how good you can feel. And it's almost like that's taken away from us. And for example, no one can see that I have a head injury and no one can see that you have Lyme. Let me just give you my example. Um, so no one can see that I have a head injury, and part of that is frustrating because when you say that, we think about, you know, why is illness— why is there so much shame involved in illness? And, you know, I feel like even with my head injury, I feel like I've not been 100%. Yeah. And my expectations for myself are much higher than they are for other people. And I think that's why I give other people so much grace, because I don't have high expectations of a lot of people. I, you know, it's just like, well, yeah, everyone's kind of doing their thing, and, you know, whether they met their goals for the day doesn't really impact me, and it doesn't really affect me. But I know every time I don't accomplish something that I wanted to accomplish I know every day when I forget something. I know every day when I'm reading and not comprehending what I'm reading. I know that that's my head injury. And I know when my speech doesn't come out right. I know when my communication is lacking. I know that that is from the car accident. And it just doesn't feel good. It doesn't feel like progress. It doesn't feel like success, and it makes me doubt myself. It makes me doubt my capabilities because, you know, I don't know how I'm going to be feeling that day, or I don't know if I'm going to be able to do that by myself or without assistance. And I think the key word in a lot of this is should. I feel like should is the word I use a lot. And, you know, I should be able to you X, Y, and Z, no problem. And I actually have found, you know, through my therapy sessions and also just my conversations with you and Mike, my husband, I feel like, I feel like I should be able to do anything that I want. Yeah, I have very, very small amount of limitations in my mind of what I think I should be capable of doing. And then there's reality. Where, you know, I have to read a paragraph 3 times in order to understand what I read. And sometimes my brain doesn't show up and it's just not there all day. And it's so frustrating because I know how good it can be.

Yeah. And I call that like shoulding myself. I should myself. I should myself to death.

I like that. Shooting myself to death. It's true. It's, it's all part of those expectations. And when you're not meeting your own expectations, how could you? I think, you know, I've thought in the past, if I'm not meeting my own expectations, how on earth am I meeting my husband's expectations? How am I meeting my friend's expectations if I can't even meet my own, right? Which is a little bit backwards because my expectations for myself are so high and those expectations aren't going to be met. And you have a front row seat to that, to those failures when you don't accomplish them.

Yeah, I think one of the hard aspects of PTSD and grief is that you're simultaneously grieving the life you once had while also trying to create the life you want and also trying to figure all this stuff out. And that makes life very confusing.

Yeah, yeah, it definitely does.

So one of the aspects of PTSD that I want to talk about is yoga. And it was interesting because I'd been an athlete my whole life, never done yoga. I remember seeing signs for hot yoga and thinking That sounds hideous. Like, that sounds like torture. Exercise in a hot room. Like, what is going on? But when I was at Invita, one of the things my physician recommended is hot yoga. And at the time, I mean, I had lived with chronic pain. I had a ton of atrophy. Um, you know, it took me a couple years just to be able to stand for the day. And yet when I started doing yoga, and I did like suffer through a couple hot yoga classes. I, I've been doing yoga for 4 years. I still cannot do like when the cardio gets above a certain level, I can't do it. I have to just kind of stop and stretch. But you and I have talked about this, um, yoga does so many things for you internally that come out externally. And I have wept through yoga classes, absolutely just wept. But it, it's one of of those things that I have come to love and appreciate about this journey is realizing that our body can. For me, I feel like when I go to hot yoga, it releases the trauma and the loss.

So in my experience with yoga, because I try to go every week, it helped me with anxiety because I knew for that hour whatever was waiting for me money was waiting for me at the end of that hour. But during that hour, I didn't have to think about anything. I didn't have to remember anything. All I had to do was just be in that room on my mat. And that gave me so much peace, you know, mentally and so— and emotionally. But physically, I think it's wonderful, you know, a good workout. But mentally, I just knew that I could relax. I didn't have to— not that any problems went away, but I just didn't have to face them. I didn't have to think about anything. I didn't have to recall anything. I didn't have to memorize anything during that hour, and it was just an hour of peace. You know, I couldn't even remember if some teachers would let you do your own flow. I'm like, oh boy, I'm not gonna remember the second move, you know. So I did a lot of staring, but it was just— there's so much peace in not having to to remember or use my— use my brain for an hour. I didn't have to use it.

Yeah, so it's so funny because one of the things that I remember, and one of the classes that I love, is yin yoga. And what they do in yin is they get into an awkward position like pigeon or one of the many others, and they hold it for 3 minutes. And I remember realizing and it sucks. Like, there's— it's really hard to hold this position, but all you have to do is breathe through it. And I remember thinking, like, you, you know, here I'd been doing enemas and swallowing pills and all this stuff that made me sick, and I'm thinking, all I have to do is breathe for 3 minutes in this position? Like, oh my gosh, I could totally do this.

It's harder than you think.

I'm like, but this is nothing compared to been through. And for me, I had that same experience in the sense of it was so simple compared to what I had been through. And so even though there's still really big challenges, I still struggle with cardio, when I come out of a yoga, a hot yoga session, I feel balanced emotionally like I used to feel without having to try.

Yeah.

So what are any other tips or nuggets of wisdom that figured out in regards to PTSD? I mean, we've talked about giving yourself grace. We've talked about putting bigger boundaries and/or margins around your life, not shooting yourself to death.

That's right. I love that. Well, let's see. Definitely those things that you listed. I think for myself, giving myself grace on a regular basis has been huge. Huge. And, you know, it could be about anything. It could be about, you know, I was awfully hard on myself for a long time when I would forget things. So even if I forgot where my keys were, I'd get really frustrated. And everybody loses their keys. But I'm, you know, I'd say, well, not 15 times in a week, you know, and it's really frustrating. And it's just next level irritating that I can't remember. And as I started to give myself grace, and it takes energy and effort, it's a constant effort to continue to give myself grace. That it's okay that I forgot where I put my keys, or also recognizing that other people forget their keys and just kind of rolling with the punches a little bit more. And I think a piggyback off of that is positive self-talk, because gosh, there's so many things that we can tear ourselves. It's like a little stab, like a little dagger, you know, that we just kind of feel just a little extra stab throughout the day. If it's, you know, I should I think, right? And so I've tried to just shift my verbiage about myself. And so giving myself grace, but while also just trying to shift my negative self-talk into positive self-talk. And I'm big on motivational quotes, and I have a group of girlfriends that I send them a motivational quote every once in a while. I made them smile on Monday morning, you know, like, hey ladies, you know, I saw this over the weekend and, you know, that makes me happy that I probably made them smile when I sent them that message. But, and then revisiting that motivational quote or that positive self-talk that I had first thing in the morning and try and carry it with me throughout the day. And on top of positive self-talk, I feel like celebrating celebrating small wins or what might seem like insignificant wins have been a huge influence for me and really a game changer because it's little things throughout the day that add up to a lot of the joy that I have throughout the day. And when I take joy, when I take a moment to recognize something as a win, it just, it includes positive self-talk because it's celebrating a victory. And even if it's a small thing, if all I get that day is a small win, then all I get that day is a small win. You know, sometimes that's the way it works. Um, I created a win board in my apartment. It's a dry erase board and it has all different colored sticky notes on it. And although I'm not great at at it, being consistent every single day, but it just reminds me. So I write something on that little Post-it note. I write the win for the day. And sometimes I have a really great win and I'm like, oh yeah, I'm going to write 2 sticky notes. You know, I'm like, oh yeah, I'm all excited. And it's a really great win. And, you know, I got an A in my class or I got a promotion or, you know, whatever. And you're super excited. And then some days it's like, you know what? I put makeup on today and that was a win because today was kind of a crapshoot. But you know what? I had mascara on and I was solid. So, you know, or I had a really cute outfit on today. I don't know, just anything because those little silly sticky notes, they're important to me. They impact my everyday. I, you know, I see that board and I see the different colors sticky my daily notes and I'm reminded that, oh yeah, I got an A last Thursday. That was really great. Or I didn't have anything, no wins that day. I just went for a 15-minute walk and I praised myself for taking that 15 minutes for me because it's good for my health. It's good for my mind. And just celebrating those little miniature wins along the way, even when they feel insignificant, insignificant, I'm reminded of them later by my win board. And it really shifts my perspective to be more positive. It shifts my self-talk to be more positive. And so I would say, you know, definitely celebrate those wins, even if they seem insignificant.

Yeah, that's awesome. Thank you so much. Thanks for sharing your journey with us.

Definitely. I will share all of my my wins, every single little one.

All right, Steph, thank you so much.

Thank you.

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 Good 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. Okay, Lincoln?

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The medical information on LymeVoice is provided as is without any representations, warranties, expressed or implied. Okay?

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