Move It or Lose It | Episode 134 | Lyme Disease: Things you may not know about Lyme from a father and daughter’s perspective

Summary

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Move It or Lose It | Episode 134 | Lyme Disease: Things You May Not Know About Lyme from a Father and Daughter’s Perspective

Podcast: Move It or Lose It
Host: Kathy Chester
Guests: Chris Hughes (CEO, Foot Scientific), Jane Hughes
Date: July 16, 2025

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Overview

In this deeply personal and informative episode, host Kathy Chester sits down with returning guest Chris Hughes and his daughter Jane Hughes, who has been living with Lyme disease. The discussion sheds light on the complexities of Lyme disease from both the patient and caregiver perspectives, highlighting the difficulties of diagnosis, the emotional rollercoaster of chronic illness, the importance of community and advocacy, and strategies for maintaining hope and engagement. Their candid conversation provides insight into the realities of life with an often misunderstood autoimmune disease.

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Key Discussion Points

1. Jane’s Diagnosis Journey

• Diagnosis Timeline & Challenges

  • Jane was diagnosed about 18 months prior, after nearly a year of symptoms. She notes her relatively “fast” diagnosis, having met people who struggled for eight years before identifying Lyme (01:37-02:02).
  • Jane’s initial US tests were negative until a more comprehensive (and expensive) European test confirmed at least three strains of Lyme (02:17-02:37).

  Jane: "I took it twice. Both times came back negative. No, you don't have Lyme. And then went to a specialist...definitely have at least three strains of Lyme." (02:17)

• Systemic Gaps in U.S. Healthcare

  • Chris explains how the US system doesn't cover or test for as many Lyme strains as Europe, leading to missed or delayed diagnoses (02:40-03:14).
  • Insurance and reimbursement policies restrict testing, often at the cost of patients’ wellbeing.

2. Understanding Lyme Disease: Myths, Symptoms, and Triggers

• Tick Bites and Under-Detection

  • Jane never recalls a tick bite, noting many with chronic Lyme don’t remember one either—a significant myth dispelled for listeners. She suspects she contracted Lyme while visiting the East Coast (06:02-07:00).

  Jane: "I have no recollection whatsoever of having been bitten by a tick. And quite a large proportion of people with chronic Lyme have the same situation." (06:02)

• Trigger Events and Dormancy

  • Lyme can remain dormant and be triggered by stress or other illnesses. For Jane, a severe COVID infection preceded the onset of her symptoms and subsequent thyroid issues (07:09-07:41).

  Jane: "We're pretty sure what kicked it off...was you get something else or some stress life, and it fires everything off. So I got Covid pretty hard and bad." (07:09)

• Symptoms and Everyday Life

  • Jane describes her predominant symptoms as profound fatigue and brain fog, without the chronic pain many others experience. She emphasizes how Lyme “knocked her off her feet,” transforming her from an energetic private chef to someone often bedridden (09:03-10:02).
  • Chris points out that Jane's presentation wasn’t psychological or depressive—dismissing an initial assumption by a doctor (08:29-10:02).

3. Emotional and Social Impacts

• Relief and Uncertainty After Diagnosis

  • Jane experienced relief at having an answer after extensive medical advocacy and self-doubt, despite the uncertainty of treatment (12:00-12:16).

  Jane: "Just straight relief. It was just, okay. Oh, thank goodness. We know there's an answer to this. I'm not crazy." (12:00)

• Parental Perspective

  • Chris and Jane discuss the emotional turmoil for caregivers—the guilt, anxiety, and confusion around treatments, alternative therapies, and conflicting medical advice (12:43-14:03).
  • The Hughes family emphasizes the continual need to self-advocate and “babysit” care coordination, often feeling unsupported by fragmented medical systems (14:57-15:08).

  Jane: "Let's be honest. It's babysitting." (15:08)

• Support Systems and Friendship

  • Jane is grateful for close friends and family able to recognize when “something isn’t right.” That contrast between her usual energy and illness made it more obvious to loved ones (16:42-17:27).

4. Living With Fatigue and Adapting Life

• Fatigue Beyond "Sleepiness"

  • Jane and Kathy unpack how disease-related fatigue is more than tiredness—it can bring cognitive problems, emotional overwhelm, and limits on daily participation (20:14-21:17).
  • Jane takes a pragmatic, patient approach: “hibernating” with anticipation of future improvement, and maintaining “intense chronic optimism” (21:41-22:12).

  Jane: "I suffer from intense chronic optimism, so I'm always...waiting about two months ahead for things to get better." (22:04)

• Reframing Self-Worth

  • The conversation explores broader cultural issues—self-blame, social skepticism, and the tendency to offer advice as a way for others to feel “safe” from illness themselves. Both Jane and Chris urge self-compassion and rejection of guilt (23:06-24:13).

  Chris: "If you have a chronic illness, you may be suffering 100% innocently...most people with chronic illness just need to really let that go." (23:23)

5. Purpose, Hobbies, and Finding Joy

• Geeking Out as Self-Preservation

  • Jane has found deep solace in “geekery,” especially in a niche online community around the novel "Journey to the West." Writing fan fiction and having a small, specific area of fascination has been vital to her mental health (28:51-30:12).

  Jane: "A certain amount of geekery has been my salvation through this entire illness." (28:51)

• Nature and Future Aspirations

  • Despite physical limitations, Jane maintains a deep appreciation for nature, birdwatching, gardening, and dreams of regaining the ability to hike (27:04-27:21).
  • Jane recognizes that physical movement, even as a newfound joy, will be an important part of her future (26:54-27:12).

6. Aids, Advocacy, and Accepting Help

• Tools That Help—and the Emotional Journey

  • Jane uses a cane and discusses the importance of finding one that makes her feel good, highlighting how visible aids can change how others perceive and support her (34:19-34:42).

  Jane: “If you have a cane and you need to…cross the street…they’re much more patient with you...” (34:19)

• Advocacy Fatigue

  • The need for personal advocacy is relentless, and Jane acknowledges often relying on her parents to champion her medical needs—something that has brought them closer (41:13-42:02).

  Jane: “Honestly, they’re much more advocates for me than I am.” (41:13)

7. Looking Forward: Treatment and Hope

• Exploring International Treatments

  • Jane shares her plans to pursue stem cell and targeted therapies in Mexico and Greece, noting that certain experimental or comprehensive treatments aren’t available in the US (42:43-45:02).
  • Chris takes a “Zen” approach—holding hope, but focusing on acceptance and faith rather than clinging to any one outcome (45:52-46:09).

• The Role of Faith and Spirituality

  • The Hughes family discusses the importance of faith and spiritual connection in coping with chronic illness (46:22-46:39).

  Chris: “It’s hard to imagine how, not having a kind of a connection or a relationship with your higher power...how to find meaning in any of this.” (46:26-46:39)

8. Advice for Others and Final Wisdom

• For the Newly Diagnosed

  • Don’t push through at personal cost; rest is essential.
  • The virtue is in recalibrating expectations, not in soldiering through (49:32-49:59).

  Jane: "Don't do what I did, which is the attempt to push through…oh no, no, no. You will be paying for that." (49:24)

• How to Explain Lyme Disease Succinctly

  • Jane: "Autoimmune disorder. It'll knock you on your butt. There's not exactly a set cure, but there's a lot of treatment. So just keep bouncing around until you [find it]." (50:19)
  • Chris recommends seeking broader diagnostic testing (SOT test / Vibrant Wellness), as US options are limited (50:35-51:10).

• For Parents and Caregivers

  • Chris counsels acceptance—doing your best in the moment, seeking prayerful guidance, and embracing that there may not be a perfect answer—just “the next best thing you can do.” (52:24-53:08)

• The Value of the “Winter”

  • Jane reframes illness as a necessary winter, an opportunity to grow and reflect beyond actions and achievements, discovering “who you are in the absence of what you do.” (51:32-51:56)

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Notable Quotes & Memorable Moments

• On diagnostic struggles:

  "We met one poor soul at the clinic who'd been bounced around for eight years before anybody [figured it out]." – Jane (01:45)

• Relief at diagnosis:

  "Just straight relief. It was just, okay. Oh, thank goodness. We know there's an answer to this. I'm not crazy." – Jane (12:00)

• Cultural skepticism:

  "There's so much like, 'well, why don't you just…?' And so many professionals don't know what to do or say." – Chris (09:46-11:15)

• Life-changing impact:

  "I was very, very energetic and active…when I was suddenly like, no, I need to stay in bed all day, it was a very radical departure from usual." – Jane (10:02)

• On living with uncertainty:

  "It’s mostly a very quiet process of waiting...just waiting about two months ahead for things to get better." – Jane (21:41-22:13)

• Wisdom about illness and self-worth:

  "If you have a chronic illness, you may be suffering 100% innocently...most people with chronic illness just need to really let that go." – Chris (23:23)

• On the comfort of hobbies during illness:

  "A certain amount of geekery has been my salvation through this entire illness." – Jane (28:51) "I suffer from intense chronic optimism, so I'm always...waiting about two months ahead for things to get better." – Jane (22:04)

• Advice for those struggling:

  "It's kind of like how plants need winter and you kind of need a rest period…You get to think about who you are in the absence of what you do." – Jane (51:32)

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Timestamps for Important Segments

• 01:37-02:37: Jane’s diagnosis timeline and testing challenges
• 06:02-07:00: Understanding Lyme transmission; no tick bite recall
• 07:09-07:41: Latency, COVID as trigger, thyroid issues
• 10:02-12:16: Symptoms, psychological misdiagnosis, and relief in diagnosis
• 12:43-15:08: Parental perspectives, advocacy, health care system gaps
• 20:14-22:12: Fatigue, cognitive issues, emotional coping, “hibernating”
• 23:06-24:13: Self-blame, “helpful” advice, and social stigma
• 26:54-27:21: Jane’s aspirations: mobility, hiking, and movement
• 28:51-30:12: Hobbies, “geekery,” and mental well-being
• 34:19-34:42: Visible aids (cane) and social perception
• 41:13-42:02: Advocacy and family roles
• 42:43-45:02: International treatment avenues, new therapies
• 49:24-49:59: “Don’t push through”—advice for the newly diagnosed
• 51:32-51:56: “Wintering” as a metaphor for recovery and rethinking self

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Episode Takeaways

• Lyme disease can be extremely difficult to diagnose and is under-recognized, especially in the US.
• Chronic illness requires deft navigation of complex, sometimes insufficient healthcare systems and constant self-advocacy.
• Emotional and social support are critical for both patients and caregivers. It’s important to reject self-blame and to reframe rest and inactivity as necessary, not failures.
• Finding joy and purpose in new ways—through hobbies, nature, or learning—can help maintain hope and resilience.
• Community, faith, and optimism are powerful allies in the chronic illness journey.
• The experience of chronic illness can foster unexpected closeness in families and clarity about what truly matters.

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For listeners navigating Lyme disease, caregiving, or chronic illness, this conversation offers validation, practical advice, and honest hope.

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Transcript

[A]

Foreign.

[B]

Your host, Kathy Chester. And welcome to the Move it or Lose it podcast, a podcast about all things that move the mind, body, and soul. The Move it or Lose it podcast is for information, awareness, and inspirational purposes only. I am not a doctor, and I don't even Play 1 on TV, so please consult your doctor before making any medical decisions. The views expressed by advertisers, guests, or contributors are their opinions and not necessarily the views of the Move it or Lose it podcast. Hello, welcome to another edition of Move it or Lose It. So you may have seen this gentleman on my podcast before. We have Christopher. Chris. I almost called you Christopher. That's probably what your mother called you. Chris Hughes, who is the CEO of Foot Scientific and his daughter. We've got Jane Hughes with us as well. And something that you may not know and that I found out a few months ago is Jane has Lyme's disease. And I'm really excited. It sounds like a weird thing to say, but really happy to have you on. Because through the years of me working with people with autoimmune diseases and brain injuries and things like that, I've always felt that people just don't know if and understand a lot about Lyme's disease. So as you're sitting there exhausted, and I'm happy and very grateful to have you on, I'm just really curious. Jane, I want to know, when were you diagnosed with Lyme's disease? How long ago?

[A]

It was about a year and a half ago. A little less.

[B]

Okay.

[A]

I was down flat for quite some time before that.

[B]

Okay.

[A]

It's a pretty. Pretty fast diagnosis, actually, all things considered. It took us a little less than a year to get the diagnosis. We met a one poor soul at the clinic who'd been bounced around for eight years before anybody.

[B]

Oh, wow.

[A]

Because a lot of the problem is that the tests for Lyme are not very reliable.

[B]

Sure.

[A]

They often come back false or. Well, yeah, you have to take it several times to be sure.

[B]

Okay.

[A]

Often. And so. So I took it twice. Both times came back negative. No, you don't have Lyme. And then went to a specialist doctor who prescribed more expensive and intense test. And. Yep, definitely have at least three strains of Lyme. So that's fine.

[B]

So where. So, okay, part of the problem is.

[C]

The US System doesn't really, um, doesn't really cover or. Or. Or diagnose for very many strains.

[A]

Yeah.

[C]

And. And, and so, And. And so you. You waste a lot of time. And so we had to go to a.

[B]

To.

[C]

To Europe.

[B]

Right.

[C]

Not to we didn't have to leave to Europe, but we had to get a test that, that they did. They do their thing there in Europe.

[B]

Okay.

[C]

Well, part of it's just the system of reimbursement here restricts things and, and then they do that for good reasons, I suppose, monetarily, but it's not always the best thing for the poor person who doesn't know what to have. And yet they.

[B]

Exactly.

[C]

Suddenly.

[A]

Yeah, they've been exactly a lot of specialists.

[B]

Yeah. I mean, I hear that so often with different diseases. Even with MS, it's like you think we'd know. I mean, the 1800s we were dipping people in that water and putting it back up again, saying, you think they're. They seem pretty sleepy. Let's do it one more time. So, I mean, we've come, we've come a little further, but it's still.

[A]

I mean, they got up to some weirder stuff than that.

[B]

I cannot tell you how excited I am to announce my partnership with foot Scientific. Their Elevate 360 drop foot solution is amazing. It's lightweight. It has customized sizing, which is amazing. I've been in braces where they are much too big and bulky. This one has memory foam. It's comfortable. I have walked my dog, I have run with it already, I have danced in it. And it is amazing. It has stainless steel anchors which you can wear them in any shoe you want to. But to be able to have them connect to your laces so that you can lift the foot, so that the drop foot isn't so bad and know that they're safe in there is so incredible. To be able to have this, to be able to have it on your ankle and then attach it to a tennis shoe, to attach it to a heel actually, or a sandal is absolutely amazing. I cannot tell you how excited I am to be a part and partner up with Foot Scientific. They are truly here to meet our needs. So I encourage you to go on to the [e-mail] check them out and of course use my discount code. It is Ms. Disrupted, all caps 30 and you'll get $30 off your pair. And also don't forget 60 day guarantee. If it doesn't work for you, then you can return it. And that is why I love But Scientific. They're a company that truly cares about our needs. So don't forget, check them out. I love my partnership with them. Have a great day. It's like, come on, do we still not know that much more?

[C]

Oh yeah.

[B]

Yeah.

[C]

Well, that's leeches.

[B]

Yeah. So with. With limes, like, so they assume. Okay. I was in. I was camping. I was in a heavily wetted area. I got ticks. My dog's got them too. So what do I do? Take the same stuff my dog takes. What should I do? So, I mean, I'm just talking, like, the stupidest person that knows nothing about Lyme's disease. So how do you check yourself for tics? How do you know? And how. What is the first symptom that you may have?

[A]

Listen. So, interestingly, I have no recollection whatsoever of having been bitten by a tick. And quite a large proportion of people with chronic Lyme have the same situation. Whether this is that it happened and I just didn't notice, which is entirely possible and happens a lot, you think, or. Or whether I managed to acquire this in some nefarious other way. But. Yeah. Yeah, quite a lot of the time. I mean, if you do get bitten by a tick, I think enough people are excited about, like, oh, go see a doctor about that.

[B]

Yeah.

[A]

Bulls, Irash. All that jazz.

[B]

Sure.

[A]

But, you know, it's. It's a lot rarer in the western half of the United States.

[B]

Sure.

[A]

And so we're a lot less cautious. I. It's entirely possible I picked it up because I have some good friends out on the east coast who I go back to visit regularly.

[B]

Okay.

[A]

You know, we'd go hiking around. Might have got it there.

[B]

Yeah.

[A]

But we don't know. And. And it just stayed dormant for a really long.

[B]

Okay.

[A]

In me. And we're pretty sure that what kicked it off was, you know, in a lot of autoimmune diseases work the same way, is you get something else or some stress life, and it fires everything off. So I got Covid pretty hard and bad, and.

[B]

Okay. And that was, like, the exacerbated trigger.

[C]

Yeah.

[A]

And so it also set off some thyroid problems, you know, which.

[B]

Okay. Fun.

[A]

Yeah. So we were really eager when we found the thyroid problems. We're like, ta da. We have.

[B]

Yeah.

[A]

No more falling over at work for you.

[B]

Right.

[A]

And I did get quite a bit better for a few months, and.

[B]

Okay.

[A]

Then started sagging back down again.

[B]

Oh, I remember when I had Raynaud, and I'm like, done. It's what I had. Good deal. So. And unfortunately, if that wasn't it. But it's like, when you find something, it's like, good deal.

[A]

Yeah. And then. No.

[C]

Yeah.

[B]

So then you started to go downhill.

[C]

Again, and I think bacteria gets more clever. That's What I'm concerned about. And so it kind of like entrenches itself in.

[B]

Yeah.

[C]

It kind of resists this and then goes to this. And there's some of that. That happens, so.

[A]

And, you know, once the biofilm barriers.

[B]

Right, right. Yeah.

[C]

Yeah. So think about Jane, you know, by the way, because I. And I always. It's funny that I even need to say this, but I guess. I guess it's kind of interesting that I do, is that there was no. There's no symptoms. What I mean by interesting is culturally interesting. There's no. That I have to even mention this, but there were no symptoms of lethargic lethargy or, Or, Or.

[B]

Or.

[C]

Or a need to. To. To. To be in bed. There was.

[B]

Right.

[C]

No depression. She didn't. She didn't. She's never had a depression.

[B]

Right.

[C]

It just, it was just something that came out of, you know, the blue. That didn't. That wasn't. Didn't. Wasn't associated with, I guess I'm trying to say, in the head of any kind.

[B]

Right.

[C]

Motivated. She has. She. She. She writes. She's a. She's a private cook. Has a lot going on.

[B]

You are. You're a private cook.

[A]

Yeah. It was the best.

[B]

I want you to come here. I want you near me. Wow.

[A]

I can't stand very long these days, so no cooking for me.

[B]

Oh, yeah. You gotta have a nice, like, area where you can, like, sit and do that somehow.

[A]

Now, sitting up is also out of the.

[B]

Yeah, true.

[A]

My sitting up.

[B]

True.

[A]

This podcast. And then I will.

[B]

Yeah, thank. I'm grateful for that. But. Wow.

[C]

Well, anyway, yeah, so it's. It's an issue because. Because there's so much like, well, why don't you just. Why don't you just. Why don't you just do that? You know, or, you know, So I.

[A]

I think I was pretty fortunate.

[B]

Yeah.

[A]

In that I was very, very energetic and active. I had a very physically demanding job. And so when I was suddenly like, no, I need to stay in bed all day, it was a very radical departure from usual. And also because I don't have any history of. Of depression and anxiety.

[B]

Yeah.

[A]

I, I only had one doctor suggest that it was all in my head rather than numerous, thankfully.

[B]

Right, right. I think that's important.

[A]

You know, you show up, like, you know, being smiley and cheerful and they tend to take seriously, which is.

[B]

Yeah.

[A]

Distressing.

[B]

But very true. You know, I think that when you come in and they think like, hey, something's not right. And when you've got parents You've got more of a support group saying, this is not her, this is not who this person is.

[A]

Yeah, that helps a lot with a lot of the. The disbelief and. And similar.

[C]

But that's not to be denigrating towards people who do have depression prior. It just makes it so much.

[B]

Oh, yeah, it's harder for sure. Yeah.

[C]

Because then they have to like, have to deal with that. Well, have you ever had depression? And then. And then they go down the wrong path because they don't a lot. So many professionals don't know what to do or say.

[B]

Right, right. And you can understand it if you've tried to get a diagnosis forever and ever and you're just so fed up and you're in so much pain, you're so exhausted and it's like, I don't know. But could you. You're the person I'm going to. Could you figure this out so you understand those people who go in, they're just so exhausted. So you went in and you were able to get the diagnosis quicker and so now you're at a spot. So I wanted to read a little bit about. Because I love what you put so emotionally. So you get the diagnosis and I asked you emotionally, how are you feeling right now? Like, I know there must have been a lot of like, what, what is this? What does this mean? Um, I remember getting an Ms.

[A]

I know, just straight relief. It was just, okay.

[B]

Yeah.

[A]

Oh, thank goodness.

[B]

We know there's an answer to this. I'm not crazy. This is like, I, I at least know what the heck I'm dealing with. And there is a huge forever for most people when they know what it is, it's like, okay, I can at least understand it and I get an idea how to tackle it.

[A]

And because treatments exist for Lyme in a way for a lot of other chronic illnesses. Yeah, it was very hopeful. It's been a little bit of a roller coaster since then with, you know, thinking the thing would work and it works maybe, or it doesn't work at all or.

[B]

But how was that for mom and dad when you found out what it was? The same kind of relief? Or was it like, ah, what is. What does this mean?

[C]

You mean when we found out what it was?

[B]

Yeah. When you finally got the answer. Right now, something is.

[C]

Then you think that you have then an answer, but that's not very straightforward because on these kind of autoimmune diseases, there's a lot of ambiguity and there's a lot of different options and there's a lot of People who kind of. I, I don't want to be cynical but who kind of prey on the. On, on. On the lack on the people's kind of real sudden need to have health. And they're desperate. And so, and so you have lots of different options. Surely spend hundreds of thousands of dollars.

[B]

Just going, oh gosh, yeah, treatment.

[C]

And so knowing which one is going to be the most helpful and not wasting the time. And then, and then when you find somebody that you hope that they're competent. That hasn't always happened.

[B]

Right.

[C]

So. Yeah, so. And so.

[B]

Yeah.

[C]

Of course, for, for mom and dad, it's like you, you, you're fearful that you know that you're not doing enough all the time.

[B]

Right.

[C]

You could. That you should be doing more. That you could be doing more. But then you don't really have a lot of faith in what's out there. And so.

[B]

Sure.

[C]

And so it's hard to draw ride the line of what's best, you know.

[A]

And yeah. And then you also kind of get warned against trying too many things at once.

[C]

Yeah.

[A]

Both because it could overwhelm the body and also because of just scientific method. You don't know.

[B]

Right.

[A]

Worked for sure.

[B]

I remember the two hospitals getting together and I just brought all of my medications in a big tub and I was like, do we think that I'm over medicated? Just a thought because there was so many of the same things. And I'm like, I'm so tired of this. And it's like, you know, I'd had it for enough years where I was like, I'm not doing this. And just halfway I, I'm not taking most of this, in case you guys wondered. So it's like you do kind of lose. Right. It's like you guys don't even think I, that I don't think you guys all know what it is I'm taking or not taking. But I think that there can be like a. They're just like stop focusing in. They don't. They say they're all. They're a team. You know, you're like, okay, that sounds great. But coordinating this team. Yeah, yeah, yeah.

[C]

Who is coordinating the team?

[B]

Right. So who coordinates this team? And gone.

[C]

Even with one clinic, so much of our energy has been taken in. Kind of like having to self coordinate.

[B]

Right.

[A]

Let's be honest. It's babysitting.

[B]

It is, it is. You are always self advocating even when you have a team because you're like, who leads this team? And how do I get this? The portal. I love the portal. It's like, okay. But I know. I hate. I always want to throw that damn portal and be like, you know what? Screw your portal. Because I'm like, who leads the portal? They're like, well, did you hear from this doctor? The doctor that I have nothing to do with that doesn't even help me. Like, no, I've never seen this doctor, so why do I have to go to the portal for this? So I'm sure. And I think people neglect to see sometimes beyond what they're struggling with and their disease, that there's. We all have them. You know, I've got my rheumatoid portal, I've got my epilepsy portal, my Ms. Portal. And so we. We don't see beyond, like, the crap we have. And I think then you hear something else like Lyme's disease or something like that, and you're like, well, I don't even know about that. So what? And it really is sad that. That our heart kind of is limited at this one thing. And so that's why I'm so curious. So emotionally, you've got your family, you've got hopefully friends that care. Because I know sometimes they're like. It's like. I love when. When we talk. We just did this in the women's group last night. We talked about fatigue and how frustrating it is when you say, I'm so fatigued. And they're like, girlfriend, I got you. Me too. You're like, really? You do? You do. You get. You get my fatigue? So that is a whole nother thing that you kind of gotta love.

[A]

You wonderful set of friends, and they are used to having the approximate energy of a rubber cannonball. And so I think they all got extremely alarmed when I was like, no, got out of bed in a few days. They were like, yeah, well, that's. That's right.

[B]

And that's the important thing, too, because we. It sounds like you and I are very similar, like little energizer bunnies. And so when I would be in bed for a day or two, everybody'd be like, oh, my gosh, we've got to take care. Because it's not, you know, I can't. I mean, your dad knows I'm up to, like, 12:1. And so I'm always on the go. On the go, on the go. So if our personalities are similar and we're in bed for a day, then everybody knows something is wrong. So it's good that you've got that.

[A]

There'S a certain amount of luxury in having that contrast.

[B]

Right, right. So emotionally, you've got that. Physically, where are you at right now?

[C]

That's not to say that emotionally hasn't been easy. It has been easy. She has this. She has the support. But there comes a time, you know, where you. I don't need to put. But there comes a time where you start to feel like, when does this ever end? You know, And.

[B]

Oh, yeah.

[C]

And how useful am I? Do I feel and that. I don't know.

[B]

Yeah.

[C]

I don't mean.

[B]

No. And I didn't mean to say that emotionally, you're. I meant that you got some support. Emotionally. Emotionally. I can imagine like the emotional roller coaster of the depression, anxiety and stuff like that. The. What's next? And all of those things emotionally take a toll. And I know one day it's like, I'm okay. The next day I'm like. And so I'm like, I don't know. Just. I can't talk right now. So I can imagine that there's those times, and it's like hour by hour sometimes. And then one day I'm like, I can go out with my girlfriends. Other days I'm like, no, I can't do nothing. So I'm sure that it's similar for you as well.

[A]

I mean, I think I. Like. The thing is, I lost my train of thought. The brain fog is also a thing. Hooray.

[B]

Yeah. I know that.

[A]

Like, it is difficult, but there. It's mostly difficult in the aftermath of a failed treatment or. Or getting your hooked up. But emotionally, I've. I've had so much good support, and I've kind of had a lot of spiritual experiences that got me through that. You know, this is meaningful. Has. Meaningful.

[B]

Yeah. Yeah.

[A]

And it kind of helps a lot. I think for me, I don't have a lot of the chronic pain that is. Is common with these, and I think I would be significantly more emotionally volatile. Issue. Most. I mean, I have kind of an unusual approach to this whole autoimmune disease in that I just have the fatigue.

[B]

Yeah.

[A]

And. And it's. I. I have all of the fatigue. Just.

[C]

And all.

[A]

Yes. But it does mean that I am a little bit more patient with things because I just want to sleep, and then I get to sleep.

[B]

Yeah.

[A]

And I don't want to do anything. And I can't do anything.

[B]

Right, right, right. We talked. It's interesting because we talked about that in this support group last night. So tell me if this means something to you. We talked about fatigue. Not just looking like fatigue. It Looks like. It can look like, you know, when you've got fatigue, it looks like sometimes our cognitive issues show up. Right. So when we're. When we're fatigued, it's like, cognitively, we're not. We're not all there. We lose our words. Anxiety shows up because we're so fatigued. And there's so many other things that come with it. With fatigue rather than just being sleepy. There's a lot of things that come with that fatigue that goes with it. There's sometimes a. Just a lack of wanting to participate in things because we are so fatigued. There's. There's feelings of I don't know what to do next. I'm just. I'm just overwhelmed. There's a feeling of just this. Overwhelm, this. And do you feel any of those?

[A]

Not hugely. I think for me in particular, like, I think I just sort of kind of put my entire everything, expectations, emotions, physicality, everything into a sort of hibernation. And so I'm. I feel like this disease has been mostly just a very quiet process of waiting.

[B]

Okay.

[A]

It's important to keep hopes up and to have some thing to look forward to, because as soon as you lose that. Oh, it gets.

[B]

Yeah, yeah.

[A]

There's always. Because there's so many different treatments for Lyme.

[B]

Right.

[A]

There's a. Kind of. Always been a next thing to look forward to. And I suffer from intense chronic optimism, so I'm always.

[B]

That's awesome. That's good.

[A]

Is going to be it. And so I'm always just kind of waiting about two months ahead.

[B]

Yeah.

[A]

For things to get better.

[B]

I love that.

[A]

And, you know, that's so good. It's very helpful to kind of. To reduce yourself in this way, but there's also a certain amount of concern about, like, eventually this will end and I'm going to have to be a real full, large person again. And I. I can sort of foresee a lot of struggles of, like, having to stretch back out after you've been curled into a fetal position for a really long time. Could be kind of. But for now, it's serving my needs is to not have to think too far ahead.

[B]

Yeah.

[A]

Yeah. It's just.

[B]

I think that's very smart because we can go too far ahead, and that. That can be so much destruction for us physically, emotionally, and looking.

[C]

And not just the issue of looking forward in optimism, but also being able to look back with compassion. We were talking today about how you just. You can't. If you have a chronic illness, you may be suffering 100% innocently. And you probably are. It's not something that you did. And I think so many people because we're in a kind of a causal material world where. Where it's to do to create causal connections and to blame. And so yeah, part of our culture and so we self blame. And so the fact is most people with chronic illness just need to really let that go.

[B]

100.

[C]

You didn't do anything.

[A]

And also a lot of the people who very unhelpfully say well, have you tried? Are doing it care. Well out of care, but also out of a certain nervousness for themselves. Yeah, yeah, this won't happen to me. There are. And so if they can convince themselves that there is, then they can also.

[C]

Convince themselves it won't happen to me.

[A]

This won't happen. Right. Like, yeah, don't have.

[B]

Very wise. That's really wise, Dane. That's. That is so common with all of our. With all of our diseases that we get those people that will always say, you know what I was reading and you should try this like ah, the illness.

[A]

Yeah, tried that. Kale and sawdust.

[B]

Yes. Or the, the bee sting therapy. I'm like, you go first and then let me know how that felt and then I will follow you, girlfriend. But it is constant that on what you find tripping.

[A]

That's. Somebody could do everything right and Right. Miserably sick.

[C]

Yes.

[A]

And so you. You want to assume that they're just.

[C]

That's the key issue. It's to think that. Yeah. That at the end of the road of trying these things that you. That this is just something that you're dealing with. Yeah.

[B]

Right. Right.

[A]

And nobody wants that.

[B]

I've had every, every spiritual thing. Did you go up for that altar call? What do you believe that you send. I'm like, I don't know. I'm not exactly sure what I will.

[C]

Look, probably I did.

[A]

I offended the great God of ticks.

[B]

Right. I'm like, I don't know. But it is like I think I've had everything in the years of like, what I could do better. What did I do? What sin did I commit? I'm like, so those things are crazy. Wow. Yeah. So you'll hear it all as you go. Your parents will hear it all. My kids heard things like, oh, I remember the stuff like, oh, my aunt died, but your mom won't. And I'd be like, what did you say to my kid? But those things are crazy. But so what is the. What I wanted to ask you too is what Is it like, when you're looking towards your future? I mean, the future of, like, not so much the medications and stuff, but when you think about, hey, I always wanted to do this. We talked about being, you know, a chef and all that stuff.

[A]

Oh, I practically miss it so much more than I thought.

[B]

I bet. I think I miss what you're going to be because I think, like, I want to taste this. What do you look at now without taking so much off? Because it's easy for us to do that sometimes when I think back to being diagnosed and I think, well, can't really do that. But what is it that you think practically, like, I'm not taking this off. I want to do this.

[A]

Mm. I. I was never hugely interested in, like, physical fitness. You know, it was something you needed to do to be able to do other things. But I think that that's going to be a major part of my life. Not only just for the sheer glee of being able to, you know, move.

[B]

That sounds right.

[A]

But also I. I feel like I've gotten a, you know, up close insight into what it would feel like to be very elderly and fragile.

[B]

Yeah.

[A]

I would prefer not to do this twice.

[B]

Yeah.

[A]

And believe that, like, yoga and all sorts of things are going.

[B]

Yeah.

[A]

Part of my life. I miss hiking intensely.

[B]

Yeah.

[A]

Expected that that would be like, I'm just like, I want to hike and.

[B]

And, yeah, for sure.

[A]

I've been, you know. I love my couch. It's a lovely couch. I have a great view. I have flowers and a bird.

[B]

Oh, nice. Oh, I love bird.

[A]

Yet I think that this couch is gonna get burned.

[B]

Yeah, I love that. Yeah, I love that. That's good.

[C]

Jane has a deep appreciation for nature.

[B]

Yeah. Oh, that's awesome.

[A]

That's me.

[B]

I love that. I do as well. Obviously the ticket, but I do. Yeah, that's pretty. But I do. I love nature. I feel most at peace when I'm. When I'm outdoors, when I'm in nature. My kids think I've definitely my grandmother now because I've got the bird app now. And I'm like, oh, yeah. I talked to my therapy dog. And I'm like, what do you think was. She's like, I don't know.

[A]

A bird watching creeps up on you.

[B]

And now my brother and I both do it the next day.

[A]

You're like, my gosh, is that a lesser Goldfinch?

[B]

And the kids are like, what are you and Peter talking about? Like, we're talking about our burden. They're like, oh, my gosh. You guys have become nerds. I'm like, kind of. Yeah. But it's like really into. Is to become a little nerdy. So I love that. I love that putting your. I think it's like finding those peaceful places that you just can rest in and I think that's important and I think a lot of us find that in nature and I think that's awesome.

[A]

Yeah. Nature, but like nerdery. In in particular, I recommend very highly. A certain amount of geekery has been my salvation through this entire illness.

[B]

What is your biggest geekery?

[A]

Oh, currently I am profoundly hyper fixated on Journey to the west, which is a 16th century classical novel.

[B]

Oh, okay. You have to tell me about that.

[A]

Don't.

[B]

No, you could tell me after.

[C]

Every word is interesting, but we don't have an hour.

[B]

No, you tell me after. I get really geeked out on things and the kids are like, it has.

[A]

Been a wonderful, wonderful gift to have something to hyper fixate on.

[B]

Yeah.

[A]

Because it's something that I can do and love and just get so much enjoyment out of without having to leave. Said.

[B]

Yeah, that will be burned at some point.

[A]

And. And I still get to feel like I'm learning something, that there's something important and exciting that I can engage with.

[B]

Yeah.

[C]

So she writes fan fiction that is the most Journey to the west fan fiction in the world.

[A]

Oh, boy. Because nobody cares about Journey to the West.

[B]

So you do. You write.

[A]

Yeah.

[B]

As well. Right. Okay. So, yeah, I love that.

[A]

Participate in this itty bitty interactive community that is, you know, very niche. And it's been really, really helpful for me to have just something to love and learn about.

[B]

Yeah. I think it's when we don't, we lose that or we lose our, like a purpose. And whether it's that or whether it's something else and we lose that, I think it's when we start to become really anxious and really kind of depressed.

[A]

And sometimes you have to kind of artificially manufacture a very small easy.

[B]

Absolutely. It could be. For me, it was Star wars really geeky for a bit. I went way deep and I was like, all right, I'm going to come out of Star wars for a while. But it could be, you know, whatever it is for us. It's just that time and season that we get wherever we're going to go deep in. It just can't be that black hole that we can't come out of that dark space. Yeah.

[A]

Other than that, whatever ridiculous thread you're onto for sure, it's very helpful. It might Be very tacky colors in your particular thread, but it's helping. Gosh darn it.

[B]

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[C]

Oh, no, not at all.

[A]

I appreciate this man, for pretending to be interested for hours at a time.

[B]

I love it. I think it's great, actually.

[C]

I do like. I do like the themes. I mean, I don't, but I'm not. I've never been very good at details and so.

[B]

Okay.

[C]

Talks to me about the kind of. The themes, you know, and. And the psychology of it. And I think. Oh, that's cool.

[B]

Yeah, yeah, yeah. I like the allegory stuff.

[C]

I can't follow it, but I can't follow because I can't remember who. Who was and that kind of thing.

[B]

You just have to get more into it, I guess. I know you have to look at it. So I see you've got a cane. So has that been your favorite? I remember when I started to diagnose, everybody sent me walking sticks and I was like, f you, F you, F you. And I just threw them all away. So I was like. Made me sad. A person with a walking stick in their first diagnosis. So. So was that something. I love the bird.

[A]

I know. Isn't it great?

[B]

Yes. I love that. I'm like, if you're gonna send me one now, it's been a long time, send me one with a bird. A cardinal or something, please. Mr. And Mrs. On the end. So I'm like, don't. Don't give me, like, a dumb walking stick. I want something cool. So that works for you really well.

[A]

Yeah, it's helpful.

[B]

So.

[A]

Reassuring.

[B]

Yeah, for sure. For sure. And we need. We need that. And I think sometimes people feel like they look at us. We are like, do you really? It's like, yeah, I do. I need that. So I feel like I'm not going to fall my face.

[A]

I'd like to know if you have a cane and you need to, like, cross the street in front of a car. They're much more patient with you than if you were just shuffling at the average pace of the octogenarian.

[B]

Sometimes they are.

[A]

For no apparent reason, they think you're screwing with them. But if you have a cane, oh, forgive it.

[B]

Yeah, very true, very true. Because I would say even with the brace, before I wore the brace, you know, you can't see my illness. So they do. Now that I'm walking with the brace, people are more apt to move on the other side. And I'm like, thank you. So where they don't before, I'm like, so I think that sometimes it's important for us to have that so that they can say, yeah, I am on the struggle bus. Can you help? So I think that sometimes that's helpful. So I love that. I think that that's important, too. And I think it's important, too. I remember I went to get the first cane, and I went, like, after Covid, and I said, you know, I'm looking for a cane. He said, they're all right here. And I was like, well, I've never bought one before. This was just a few years ago. He's like, well, just pick your color. I'm like, no, I don't know what I'm looking for. I don't know how to fit myself. I don't. He's like, well, just, you know, make sure that he just talks so fast. I'm like, what? So I just laughed because I was like. So I literally had a YouTube, like, what to do with the cane, how to. But it was just disappointing that, you know, again, it's like, where did the people go that help with this stuff? You know, where now you're using one that.

[C]

That. That you really like.

[B]

That called right now. I've been using. Now you put me on the spot, and I can't remember. I've been using the canes from.

[C]

Shoot.

[B]

Gosh, she's going to kill me. And I love them.

[C]

Just cut this part out right here so that.

[B]

Yeah, Jacob, don't.

[C]

Question for the.

[B]

I'm like, right on the spot. And she's going to murder the question.

[C]

So that you could. So that you could promote. And then you blew it.

[B]

I know. So just. Just keep this out of there. It's on. And I just saw it too, and I just thought I got a.

[C]

Don't worry about it. You're good.

[B]

It's a good. Because I would love to get you one. What is it? It's something.

[C]

King.

[B]

Oh, I just saw. It's a really cool. I have one, like, right in here. I just saw it today, too, because I was like, oh, they've got. They've got a brand new one out right today, like right now. They do. She makes them from a wine bottle. So Jacob, just keep this out for a second. He's so good about this. He's awesome. There's. They make them in a bunch of different colors and. What is it called? Okay, you have to help me find it, too. Oh, you know what? It's on my. They're on my Instagram. So I'm gonna look at that because I have one that I'm walking with it. All right here. Promise I'll just be. Now you're falling asleep. Hold on. Swear. I'll be fast. I'll be fast. I'll be fast. Where is this one? He moved it to the bottom because it was always at the top forever. Oh, here it is. Okay, so it is. It's so weird. I have it on here and it's not. That's weird. It has. Has it on there. It doesn't have the. Why would it not have been on there?

[C]

Interesting.

[B]

I have it right there without the cane. I mean, it's got that. I've got the cane with me and it's. I'm gonna be so angry with myself. Let me take one more second. I just went right past. And they're so. They're so cool. I really like the bottom of them. And you can get any kind of handle on the top. They're so comfy and they don't move. She's gonna have me do, like, exercises with them. So they. It's really weird that it showed up with it. So she's gonna have me do exercises with the cane. Oh, wait, here it is. Okay, so it's called.

[C]

Brandy flask, musk smuggler.

[B]

Candy cane. This one. Candy cane one. And it is. So weird. I don't have. It looks like that. So it looks Like a little. Can you see that?

[C]

Yeah.

[B]

And I. I'm on here. I'm like, why would I not have.

[C]

Well, it looks like a Bo Peep.

[A]

Like a Bishop's Crozier.

[B]

Yeah, it's really cool because she does them finest. How are you starting yourself, Little Grace? Would I not have. That's just so weird that I wouldn't have them.

[C]

Oh, that's okay.

[B]

I'll get it to you.

[C]

I didn't say that.

[B]

Super cool. Okay, I'll send it to you guys. Driving out. So it wouldn't be on here because it's. I don't know. But anyway, it's a really cool. I really, really love. I'm going to work with her, like I said again to try to do some exercise. If you're seated and all you can use is a cane. Why I can't remember the name. I don't know. So, Jacob, back to it. We're just not going to talk about the cane. So I think it is cool to find one. When I go to see my best friend in Colorado, the kids call it the lightsaber or the candy cane. Okay. So I think it's a really important thing to find one that you're. Yeah, we'll put that. Okay. So one of the other questions that I have for you both is one of the things that. Is that. So you know already you've got to be your biggest advocate. Are there times when you are just too tired to advocate and do. Are those the times that you ask mom and dad, like, can you just help me do this today? Because I'm so sinking tired of advocating?

[A]

Honestly, they're much more advocates for me than I am.

[B]

And how does that make you feel, dad? Does it make you feel like, yes, I can because I have, because I really want to and, well, I mean, I can do something.

[C]

There's a sad upside to the whole thing, which is that Jane is more open to receiving than she was early in or more early earlier on in our relationship.

[A]

No pride for me these days.

[B]

Yeah, I kind of guess so.

[C]

I'm really grateful for the chance to, you know, connect with her. And I hope I have the. You know, I hope I. We can continue to have this one who's feeling great.

[B]

Yeah, I like that for sure.

[A]

Relationship. Yeah.

[B]

Yeah. That's really awesome. So I kind of want to now, like, as we're coming to kind of a close, just that I want to know about because we understand with Ms. That we go to Mexico and a lot of us get hsct. I've not had that. But a lot of people are doing that. And there's kind of like pros and cons, like with everything. And so with. With what you've got, you know, that silly Lyme disease. That isn't a big deal that you have. So when you go there to do your. Do you have any idea what to expect as you're kind of looking into this? What is it that will be happening for you if you absolutely know if. Or you're just kind of looking into it?

[A]

I mean, honestly, I don't know that much yet. I've heard so many good things from a whole lot. Like just totally disparate people have brought this up spontaneously.

[B]

I think it's at the same hospital. I think you're in the same. Yeah. And all I've heard are amazing things.

[A]

Yeah. So it. You know, I have a lot of hopes for that. But it does seem like they run a lot of tests there on the site.

[B]

Yeah.

[A]

Alter their prescriptions for you then and there when you arrive. So, you know, I've researched what procedures they have available, but.

[B]

Okay.

[A]

See which ones they decide are particularly going to be of use to me.

[B]

So you do a lot of research. That's great about.

[C]

Is real. Just real quick. Is this plasma phoresis where they replace everything, but then if you don't then they introduce stem cells right after.

[B]

Okay.

[C]

So that the right kinds of things get. So they can kind of generate the right kinds of blood, I suppose.

[B]

Is it your own stem cell or what it.

[A]

No, no. They're from a Placementa.

[B]

Okay.

[A]

And you can get a lot more in Mexico than you can in the US and for significantly less money.

[B]

So you're not going to go to Russia.

[A]

This particular point.

[B]

Not a good time.

[A]

I have a lot of hope for the stem cells specifically because tomorrow I go in for a new treatment that's not available in the U.S. okay. That we had to have shipped in from.

[B]

Okay.

[A]

And it's supportive from Greece therapy and.

[B]

Okay.

[A]

Yeah. So there's. What is that it's available for cancer and for specific types of autoimmune where they will identify your specific strain of whatever it is.

[B]

Okay.

[A]

And. Oh, it works differently for cancer. Never mind that whole bit.

[B]

Okay. I was like. Nope.

[A]

But they. I know that this lab also does a lot of treatments.

[B]

Okay.

[A]

Lab and Greece. But they. Specifically for Lyme. They identify your unique strain because there's a lot.

[B]

Interesting. Yeah. Which again, people don't know that don't realize.

[A]

And then they will give you this injection which is Meant to stop the RNA of that bacteria so it can't reproduce. So I'm getting that tomorrow. And.

[B]

Okay.

[A]

Hopes for that success there, but because it. We've tried it once before and it had some success, but not enough.

[B]

Okay. Okay.

[A]

We're hoping to do it again with the boost of the stem cells.

[B]

Okay. Oh, yeah. You got to keep us posted. We might know how that goes. Yeah.

[A]

I have high hopes.

[B]

Yeah. For sure. So, mom and dad, how does that. Do you get really excited when this happens, or is it like a. Excited, but like. I want to be supportive. I want to make sure that we're here. If it doesn't, what is that?

[C]

Like, taking more of a Zen kind of approach of like, just. Just. Just to. To let what comes come.

[B]

Yeah.

[C]

With hope. Always that.

[B]

Yeah.

[C]

You know, and. And. And. And. And faith that.

[B]

Yeah.

[C]

Miracle. So.

[B]

Yeah. I don't know how people do this without faith. I have to say, like, good vibes. And I'm like, I don't know how you do that, because faith, for me is the only thing that gets me through this. So I don't know people. I don't know.

[A]

Be a lot harder, but.

[B]

Yeah, for sure. Yeah.

[C]

But it's hard to imagine how. Not having a kind of a connection or a relationship with your higher power.

[B]

Yeah.

[C]

How to. How to find meaning in any of this.

[B]

Yeah. I don't think I could do, like, summer vibes. Get through it. I'm like, okay. Winter vibes. Get through it. I don't. I don't know that that would be the thing that would, like, charge me up and get me through some of these days. I don't think that would work for you either.

[A]

So I just don't see that the summer vibes. My hollyhocks are, like, 9ft tall, just outside.

[B]

Oh, nice.

[A]

That's getting me through a lot.

[B]

I'll just show you. I'll show you that I'm like, I didn't grow as much. I'm. My nerdiness. I got really into. Into. Really. I was just growing everything. I'm like, I could do green beans. I can garden. I can do everything. So I had to, like, limit this year, but I'm really excited about the stuff I am growing, so I'll show you some of that. So I think we have to find that. One of the best advice I got from early. Early on is an older woman came up to me, and number one was, and the gentleman said, don't stop moving and find something that you've not done. So I always tell People that when I talk to them now is whether it's movement or something. Don't try to compare what you used to be able to do and try something new like you've been doing. And so I found. I don't know why I tried running, so I never did endurance running. I played a lot of sports, so I tried endurance running, so I felt a lot, but I thought, I've never done it, so let's do that. So I think it's neat to try something that you can't compare what you were before. So I don't know if that helps, but maybe trying something that you've. You've not done and seeing which you already are, but trying something that you've not done before, that is.

[A]

Yeah. See the wisdom in that.

[B]

Yeah. So I'm curious. I asked you this question, and what would you say to someone who doesn't. First off, who doesn't understand what Lyme's disease is? They. They don't have any understanding. How unlasky.

[A]

Both.

[B]

How would you explain it to someone?

[A]

I actually don't know that I'm the best exemplar or, you know, just because I kind of have this unique variation on it where. Where I don't have a lot of the fairly miserable side of it.

[B]

Yeah.

[A]

A lot of people with Lyme have.

[B]

I'm just very, very tired, and that's okay. I don't think I explained it to people for a long time.

[C]

So the hard thing about the whole thing is because, you know, the. The. These autoimmune symptoms are. Are so generalizable, and they cross over broadly. It's not like a. It's not like, oh, there's the femur and it. And it's in two pieces.

[B]

Right.

[C]

Like, it's like there's lots of different crossover on symptoms, and so.

[B]

Yeah, sure.

[C]

So it is a little bit of a, I think, fishing trip.

[A]

The most important thing here, if you're brand new to Lyme, is don't do what I did, which is the attempt to push through.

[B]

Yeah.

[A]

Oh, no, no, no. You will be paying for that.

[B]

And most of us do. You know, I think it's either one or the other. Either we sit down and say, that's it, or we just go, you know, I think it's personality.

[A]

It's kind of a virtue, is to push through pain.

[B]

Yeah.

[A]

To do something, and it. You have to kind of recalibrate that. To think that that is not a virtue. That's a dumb.

[B]

Yeah. Yes. Yeah. Dad. How if someone came up to you and said, hey, you know, what is Lyman? What would you say? Would you have a way to just kind of compact to someone after the pandemic has about a 30 second ability to listen? What would you say?

[A]

Autoimmune disorder. It'll knock you on your butt. There's not exactly a set cure, but there's a lot of treatment. So just keep bouncing around until you.

[B]

That's so good, because that's about what they can hear. They go, all right, cool. So, dad, what would yours be?

[C]

I would recommend they do get the SOT test diagnostics because America doesn't have a wide range.

[A]

Partly because the test is called Vibrant Wellness.

[C]

Vibrant Wellness. And there. And because. Yeah. Because America's system doesn't really include a lot of depth into this.

[B]

Yeah.

[C]

So that's one way of knowing.

[A]

Yeah. And we say even if your test came back negative for Lyme, that doesn't actually mean anything.

[B]

Yeah, I like that.

[A]

So, you know.

[B]

Yeah. Last thing. Then I would say, newly diagnosed, really struggling, feeling like what. How do you encourage that person? Either one can go first.

[A]

It's kind of like, you know, like how plants need winter and you kind of need a rest period.

[B]

Ooh, I love that.

[A]

Good ways to think about this as, like, it can be a very useful experience for you and very healthy to go through a winter where you. A lot of the usual expectations no longer apply and you get to think about who you are in the absence of what you do.

[B]

Yeah. Wow, that's really reframing. I love that. You're so good at that. That's beautiful. Gosh, I love that. I want. Can you do that? And I can, like, frame it. She'll.

[C]

Calligraphy.

[B]

That's beautiful.

[A]

Excess time and energy.

[B]

Yeah, that is beautiful. I love that. Dad, can you. Can you make that one better? Probably not, but that's.

[C]

Let me look at chat GPT for just a second.

[A]

Yeah.

[C]

Yeah.

[B]

That was really good. What would you say, dad, you have someone coming up to you and their daughter, their son. What would you say? They're lost. They're feeling like. I don't. As a parent, I don't even know how to help say.

[C]

Well, yeah, that. That's exactly how it is. You don't know exactly how to help. And that's something you learn to, you know, live with. And then prayerfully, in. In my view, just ask what the next best thing you can do.

[B]

Yeah.

[C]

Then try to have the courage to do that.

[A]

It's true. Because there. There might not be a right answer, but it's a good enough answer. And there's.

[B]

Yeah, you know, yeah, I love those, but you guys are awesome. And, you know, I love your dad, Jane. And I haven't met your mom yet, but I'm gonna have them on sometime. So I just. I love your dad. I love you. It's so great to meet you. I was so excited to have you on. And I really appreciate. I know you've been exhausted, and I know you're loving your couch, but I really appreciate you being on here and just explaining because I think it's so important that we understand the different autoimmune diseases. And sometimes we get stuck into one and we're just talking about one over and over and we don't understand the other ones and how they do mimic each other and how sometimes we pack them on, like Pokemon cards and we just keep getting more and more. And that's what I keep saying my body's doing. I'm like, okay, enough. We're done. So I'm like, I don't need to collect anymore. I get it. I can now feel the pain of others. I get it. I don't need it anymore. So I really, truly appreciate you both coming on and just sharing just what it's like as a family, too. You know, it's very unique as a dad and daughter, how that works because you. I get it as a patient and a mom, how I want to take it away, but I understand as a patient, too, to be able to try to talk about the ick that goes with it as well. And, you know, the poop, the pee, all the stuff that goes with it, the anxiety, the. The sleeping, all that.

[C]

Thanks, Kathy, for being that kind of person who can get the. Kind of. The emotion because you've been there and it just speaks a lot for you, but also just how valuable it is to have people who are sharing the same kind of mortal experience. Yeah. So, yeah, you have a nice style. So we appreciate it. So thanks.

[B]

Thank you. Well, promise you guys, I'd love to have you guys back after. Maybe you go to do this then in Mexico and. And I'd love to have you guys back to see how you guys are doing later on. But thank you so much for being here and explaining. And guys, don't forget to hit subscribe. And thank you both for doing this. And you go night night and I'll see you guys back. So, guys, don't forget. We'll see you guys next time on Move it or lose it. And don't forget what you don't move you will lose. So keep moving and I will see you next time. Bye guys. Thanks for being on. Thank you so much for joining me for another episode of the Move it or Lose it podcast. It would mean the world to me if you subscribed and left a review. Remember, you can find me on Apple, Spotify, Stitcher, and YouTube. New episodes of the Move it or Lose it podcast air every other Wednesday. If you have any suggestions for future guests or topics, please visit my [e-mail]. until next.