Finding Balance: Jake's Journey with Lyme

What if embracing your vulnerabilities could become your greatest strength? Join us for an enlightening conversation with Jake Mayers, a Lyme coach who has turned his chronic illness journey into a pathway for helping others. From dealing with dyslexia as a child to confronting the harsh realities of a Lyme disease diagnosis at 15, Jake's story is one of resilience and creativity. He shares how he balanced the fatigue and neurological symptoms of his illness with his passions for drumming and filmmaking, and the pivotal shift he made towards prioritizing self-care and rest.

Jake emphasizes the crucial role of tuning into your body’s signals and trusting your intuition, especially when traditional medical advice falls short. His anecdotes reveal the transformative power of self-advocacy and persistence in seeking the right diagnosis and treatments. We'll highlight practical techniques like mindfulness, tai chi, and qigong to help calm both mind and body, and discuss the emotional challenges of hiding an illness versus the empowerment of sharing your journey.

The episode concludes with a powerful discussion on the importance of community support. Jake introduces us to valuable resources like Spoonie Sisters and Cabana, and the concept of "Best Friend Advice" (BFA) to foster self-compassion. Listen as Jake’s insights offer practical strategies for managing chronic illness while finding strength in vulnerability and community. Whether you’re navigating your own health challenges or supporting someone who is, this episode provides a rich tapestry of advice and inspiration.

Instagram: https://www.instagram.com/jakemayerscoaching/

Complimentary Consultation: https://calendly.com/jakemayerscoaching/lyme-support-consultation

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:00 Navigating Chronic Illness
• 7:30 Tuning Into Your Body's Signals
• 12:25 Exploring Healing Practices for Chronic Illness
• 16:44 Embracing Healing Through Sharing
• 23:16 Empowering Dialogue on Advocating for Health
• 34:20 Community Support and Resources

Transcript

Jen: 0:08

Welcome back to my Spoonie Sisters. Today, I am thrilled to introduce a special guest. This is Jake Mayers. Jake is a Lyme coach with a mission to help warriors battling Lyme disease manage their symptoms, rediscover joy and find a renewed sense of purpose in life. Through his own journey with Lyme, jake has developed a unique approach to support others facing similar challenges. Whether you're living with Lyme or supporting someone who is, jake's insights and strategies are sure to inspire and empower you, so let's dive in. Hi Jake, how are you today?

Jake: 0:43

Good good good.

Jen: 0:44

How are you?

Jake: 0:45

I mean well before you asked me that and I said tough question with chronic illness, you know. But no, I'm so great, I'm grateful, I'm happy to talk to you and the Spoonie sister community. Yeah, this is exciting.

Jen: 0:56

Yeah, we're so thrilled to have you on. I've been following you for a while and I absolutely love your encouraging and fun content, so I'm so excited to have you on here.

Jake: 1:07

Yeah, likewise. Likewise especially yesterday, I was listening to old episodes, I was checking out some more of your stuff and I'm like, oh, we need more people like you in the world, and I love that you're doing this.

Jen: 1:17

So thank you, thank you so much. Do you mind sharing a little bit of your journey with Lyme and kind of where that started? Maybe you know your first symptoms.

Jake: 1:26

Yeah, sure, I mean, I think it's funny. It's funny, okay, usually I start with getting sick, but my journey actually started before that, when I failed kindergarten and figured out I was dyslexic and couldn't color in the lines, and obviously I didn't know this when I was six years old. But, looking back on it, that was the beginning of me developing this mindset that I've cultivated, which is your whole thing. If you can't control what comes at you, we can't control the fact that we got sick, but we can control how we respond, and so, even at a young age, I started to respond to challenges in a way where I felt empowered. I'm not going to let this make me feel less than even before getting sick.

Jake: 2:06

So, in terms of chronic illness journey, though, when I was 15, perfect storm of different things I got bit by a tick at some point before that we don't know when, but when I was 15, I was fortunate enough to go to India, which was amazing but completely destroyed my gut.

Jake: 2:19

I got a bacterial infection. My gut's never been the same since. Later that year, I fell snowboarding, got a concussion, compromising my immune system more, and then I landed in the hospital with viral meningitis. That year they did a spinal tap which many years later I look back on and saw evidence of Lyme disease then that they dismissed. But long story short, by the end of that year I contracted Lyme and it started because of the weaknesses in my system it started to take over. So from the time I was 15 on, I just remember being acutely and chronically ill and then I have all the doctor's offices, lots of mysterious symptoms and in and out of the ERs and MRSA, epstein-barr and strep and all of these viral infections that pretty much everybody told me you're fine, like rest in fluids. It wasn't. I think it took me 10 years, almost nine and a half, till I got a proper Lyme disease diagnosis and started my kind of treatment journey.

Jen: 3:13

And you know having that happen at 15, I mean, how the heck did you get through school?

Jake: 3:22

I have a theory and I think you and a lot of the Sweeney sisters are the same that chronic illness targets people like those of us that have these situations are inherently resilient. You know what I mean. Like we are strong people, because we would not be here listening to this and talking about this if that wasn't the case, you know. And so I think I've just always had that perseverance. It was never, it was just the yeah, okay, I feel miserable, but so what? I'm still going to keep living my life, you know.

Jake: 3:47

So I, I lived and I was very high energy and adventurous and active, which I also think makes it really challenging to heal from chronic illness when you start to learn how to manage your spoons and embrace rest and self-care. I'm sure we'll get into it. But making that transition as somebody who's inherently and or previously, very high energy, passionate, go-getter, it's tough, you know. But so I had that energy and I just kept going and, like dyslexia and chronic illness, the same thing I just found outlets to channel my energy and frustration. I was angry, I was upset, I was sick, I didn't feel good, but I channeled that into drumming, snowboarding, filmmaking, just any creative outlets that I could release that energy and get a sense of presence and confidence. I would, I would gravitate towards that stuff. That's what keep pushing me through, as well as, fortunately, an amazing support system and people around me that encourage that positive mindset.

Jen: 4:42

So what would you say was the most difficult symptom that you dealt with?

Jake: 4:47

It's kind of like a two-part answer, because at first it was the viral symptoms and just like the third or fourth day of the flip and feeling that every single day is your baseline, it's so rough and just the fatigue and the feverishness. It's like that fatigue that it's heavy. It's like the core of the earth is pulling you down. You can sleep as much as you want, but you're still tired. That was difficult and I thought that was the most challenging, until neurological symptoms came up and I had a sudden onset of anxiety, severe anxiety, depression, brain fog, and those were way more challenging to me because historically I've always been able to use my mind and my brain to manage and sometimes even override physical symptoms. All of a sudden, when you don't feel yourself and can't think, think straight, when you're having panic attacks, you can't really do that, and so, of course, to me and I think to many people the neurological symptoms are the most challenging. Oh, I think it's it's the most challenging part.

Jake: 5:44

You usually you could use your brain or we can develop the ability to use our minds right to overpower physical symptoms or cope with them and manage them. As soon as you start having crippling brain fog and anxiety, as soon as you have disassociation and don't feel yourself like you're outside of your body, that is the most challenging symptoms to me and it's just so overwhelming and unsettling, you know.

Jen: 6:07

Absolutely, and so how did that impact your mental and your emotional health?

Jake: 6:12

Man, that was tough. That was tough, you know. I think I've always taken pride in my ability to be strong in the face of this and at first I tried that. So I tried that. You know what, just like a physicist, I'm not going to let this stop me. I'm still going to show up, I'm going to do this Right, not going to get just, and I feel like it's a way to survive but not thrive, like in order to truly live a balanced, sustainable life in the face of chronic illness, you have to learn how to surrender, you have to learn how to find balance, you have to learn how to create space in your life to feel these things, not to overpower them, not to be stronger than them, but to invite them in.

Jake: 6:47

So it was a journey like all of us go through with mental health, and there's ups and downs, and so I tried to fight it and then ultimately learned to surrender to it and invite it in and feel it. And that's tough and it's dark and it's challenging, but ultimately more relieving when you can work through that, you know. And it doesn't manifest in your body as physical symptoms nearly as strongly as if you just resist, resist, resist.

Jen: 7:10

So what strategies or treatments have you found to be most effective at alleviating these symptoms, so Lyme?

Jake: 7:16

disease is really interesting with that because there's no one size fits all. Just because something works for me doesn't mean it works for somebody else. There's a lot of misinformation, there's not a lot of awareness and funding Insurance doesn't cover anything but bottom line. I went on a six-year journey of trying it all and I was fortunate enough to be able to access some of the best practitioners and even travel to Europe and go to clinics, and I did all of this and some of it most of it didn't make that much of a difference. Some of it made me drastically more sick. There was a round of IV antibiotics I did for a month that completely destroyed my physical ability Like I could not walk for a year after that and then there were just a couple of things that were game changers, move the needle that made a big difference, you know. But throughout all of that, and especially after six years of intense treatments and then finally went from like 20% functionality to like 80% functionality, and I would say there's a couple of key things that contributed to that. Number one was finally listening to my body again.

Jake: 8:17

I cannot emphasize that enough to your community and our people, because when we're sick for so long, we become desperate for answers and I heard you talking about this in a recent episode about being being okay to advocate for yourself and tell that doctor hey, I'm not comfortable with that After so many years of being desperate for answers. We go to practitioners and whatever they say, we're like, yeah, we'll do that, You're the expert. But that leads us down the wrong path. That takes us away from our intuition and we try treatments that, yeah, it might've worked for Jen, it might've worked for this person, but it's not right for me and where I'm at in my journey. And the only way that you can figure that out is if you're listening to your body and advocating for what feels right. So I just can't emphasize that enough. It doesn't matter what treatment you do, if it doesn't feel right, it's not going to be. Yeah, did you want to?

Jen: 10:08

Yeah, absolutely, and thank you for listening to that. I don't think I can say that to people enough, because if you're not listening to what your body's trying to tell you, there's something that you're going to miss, and we're going to miss things anyway. But you know, our body is telling us whether something is right for us or not, and I think you know I preach this to people all the time, but especially in my generation, we grew up thinking there was this magical pill that they were going to give us the moment we went to the doctor and once we took that pill, we were going to feel so much better. And that is so not how it works. And these diseases, they're sneaky. They're sneaky and they're different for every single person, it feels like, and so I guess that's a long-winded way of saying I absolutely agree with you.

Jake: 10:54

Wait, can I ask you something about that, though, you know? I mean, did you always feel you were able to listen to your body? Did you go through a period where, kind of like I'm saying, you strayed from your intuition and then you came back to it? And if so, what helped you? And we could talk about what helped both of us, you know.

Jen: 11:09

Yeah.

Jen: 11:10

So I think in the beginning I was just so scared and I was so convinced that I was going to be like this crippled 90-year-old lady and I was only 30.

Jen: 11:19

I was 30 years old and I was convinced my life was over and I knew something was off, because they thought that I had an infection hiding in my bones. And you know, I guess that's a thing, I guess it happens to people, but that is not what it was and I wish that I would have known to push harder to do more testing to find out what was going on with me, because I could have avoided a lot of pain and could have been walking a lot better. You know, I had three kids in middle school and so they needed me. They needed me to be there for track and football and all the things, and so, you know, now I feel like every little thing that's going on. I can tell it. I can tell what's going on when I wake up in the morning the pain in my hip. I know if it's an arthritis pain and I know if it's that I slept wrong pain or I'm just getting older pain. So I don't know if I answered your question very well.

Jake: 12:14

But you had to work to get back to that, to be able to know that right.

Jen: 12:17

Yeah, and it takes a lot of time and it takes a lot of just getting to know yourself better.

Jake: 12:22

Exactly, yeah, and I was kind of hoping we could talk about this too. I want to come back to what you're saying, but it ties to the sense of identity, and I also saw a post that you did on this about holding onto our old selves. I feel it takes up so much space to the point where we can't create a new version of our lives, and it's so challenging to grieve our old selves and every time we see a picture of us playing that old sport or being active. You know it's tough, but it does take a lot of that. Coming back to yourself, but also a newer version of yourself, I think you said it was a point of view video of you walking and something about a new normal. You know, yeah, you're coming back to a new version, but okay, there's so much that I want to say this going back to the listening to yourself, like you had to work to get back to that intuition, right. So I think that is the number one thing is being able to do that, and I think it's so challenging and I just want to encourage people to go on that journey and to know that it's different for everybody. There are proven methods and techniques to help you do this, but there's no one perfect way, just like.

Jake: 13:21

The second thing I wanted to hit on in terms of what helped me the most was mindfulness and being able to get my body into a healing state out of fight or flight in the parasympathetic right, and we know meditation is a proven way to do that to manage your emotions, to create space. Maybe a guided meditation doesn't work for you. For me at first, because I was so high strung. It really didn't work. I would sit there, I'd be like why aren't I met? Why don't I feel?

Jen: 13:45

calm. Shouldn't I feel calm?

Jake: 13:46

and then my mind would race and why isn't this working? Is something wrong with me? What so I had to learn that there's so many different ways to access these skill sets? The guided meditation doesn't work for me. I need to be moving my body. So tai chi and qigong became a form of that to me, and I think it's the same. But listening to your body. There's no one perfect approach, but even just small things like going on a walk or getting back in touch with things that bring you joy, even if it's like something like coloring, or just these very basic things that maybe they're not high energy like you used to, you get a glimpse of yourself. You get a glimpse of your intuition, present in the moment. Those sort of practices are so, so powerful when it comes to managing chronic illness.

Jen: 14:31

Absolutely, and I love the fact that you're touching on the fact that you found that it wasn't working in the beginning because you needed movement and so you found a way to get that movement in, and so I love the I'm butchering my words, but I love the fact that you found a way that worked for you. And I'm going to throw my son under the bus right now because a few years ago he started getting panic attacks and it kind of runs in our family. It's an issue. But he comes home one night and he's like I don't know what's going on with me, I can't settle down. I just got done throwing up and blah, blah, blah, blah, blah, and I was like well, you're having one of your bad panic attacks. Just, you need to sit down, you need to calm down. And he's like I don't know, I can't, I'm too antsy.

Jen: 15:13

And I said let's try watching a movie. We tried watching a movie, couldn't relax. And so finally we did. We turned on a meditation on Amazon and I was like just lay on the floor, you're going to be fine. Deep breaths, I knew it, he was snoring, and so I mean you can be so high strung, but if you just give your body a chance and you calm the heck down and listen, it's possible.

Jake: 15:38

Yeah, but for him the watching the visual didn't work, but as soon as he closed his eyes and switched to auditory, he was just listening. That was more accessible for him. That's a great example.

Jen: 15:47

And I think you know, for people like that, that's a prime example of what they need, or they need to do something more like what you're talking about as well. But how long did it take you to get into that practice?

Jake: 15:58

Well, as I started doing it I started. This is what happened is sudden onset of anxiety. Neurological symptoms hit a rock bottom decided to tell my employer for the first time. I kept chronic illness of Us a secret. Up till then, pretty much nobody in my life knew, which is another thing that I would love to hit on, because it takes a lot of energy to hide it and it's a big burden to carry on your own if you're out there right now Not telling anybody. We should talk about that. I told my employer, I went and worked from home for a little and then I was like, okay, I'm going to move to LA and I'm going to pursue healing and career. And I tried to do both and the career wasn't working. So I said, all right, I'm going to live off my savings, I'm going to do whatever it takes to heal. And I dedicated. It ended up being two years of not working and just focusing on healing.

Jake: 16:45

Shortly after I started that chunk, I joined a run club and at the beginning of the run club it was like 100 of us in a street and this guy led guided meditation before the run and we're all there with our eyes closed, connecting with their body and it just really did something to me where I was like really fascinated by it and wanted to do more of that, and so I started doing more of this, studying it, and then I started sharing on Instagram, just like, hey, this is what. And people started to be like, wow, this is super helpful To me. I started, as I studied it, realizing that I've done this my whole life. I just didn't know it, but playing drums has been a form of meditation and a way to tap into a flow state. My entire life I've been focusing on building that skill set, because it's a skill set like any other. You can learn it and, just like a muscle, you got to work it consistently and build it up over time, forming new neural pathways. Our brains are similar to, you know, a muscle in that regard, and so knowing that I've done it for some time helped encourage me in terms of continuing to do it in more accessible ways, given my accommodations and restrictions you know what I mean, because I couldn't go out and run and play drawing soon.

Jake: 17:54

Running got taken away from me. But so then I figured out, okay, well, tai chi, qigong um. And I would say, yeah, it was like two years of me really practicing that to the point where I got the muscle just like physical strength, to the point that I could use it without really thinking about it, just like if we're able-bodied and walking around, we're not thinking I have to engage my hamstring and my quad. Same deal. Somebody cut me off in traffic. A doctor said something I didn't like. I got a test result back. I could have in the past just reacted right away and tensed up and right in that moment I would be able to take a deep breath and choose how I want to respond to that and say, okay, I'm not going to let this rock me, I'm going to stay calm, I'm going to choose to focus on what I can control. So it was two years of intensely focusing on it and training in it and whatnot. But it's been a lifelong journey, you know, and it continues to change.

Jen: 18:47

Absolutely. I think that's wonderful and thank you for sharing. Okay, so circling back to some of the stuff you wanted to talk about where do you want to go? Next.

Jen: 19:07

In the beginning, I lost friends because people did not understand what was going on with me. I actually had one person tell me that she couldn't handle having a sick friend because she had lost her husband, and so the fear of losing someone and I was like I'm going to die from my RA, like what? And so, honestly, that made me a little more afraid of what was going on with me just because of her reaction. But I mean, ultimately I had to finally decide that it wasn't up to them and any important friendship out there is going to be there, and so I definitely found who my important people were and I was able to share more.

Jen: 19:47

Eventually in 2020, I took to Instagram and started sharing more about my story as well, and it just got easier and I always tell people it gets easier as you practice. It's still kind of intimidating and scary because you don't want people to judge you or look at you differently or whatever, but what I've noticed is now people come to me. So all the people I was afraid to tell, as they're having something going on with them illness-wise they're coming to me or they're sending family members to me and they're saying you need to talk to her because she might have the right person for you to go to next or the right rheumatologist to recommend to you, and so it wasn't a bad thing. I scared myself and had myself so hyped up over it, over nothing. The important thing is to stick around.

Jake: 20:29

And it's part of that process of healing. You know you want for nothing, the important people stick around, and it's part of that process of healing. You want people in your life that are going to support your healing. I think I felt the same thing and so many of us have dealt with that, and there might be people listening right now that feel that, and I think for me there was a handful of reasons why I hadn't shared. The obvious one is the judgment and the fear of what will people think, or what they think less than me, or that I'm less capable, or I also feel like I just didn't even have the vocabulary to describe what these experiences were like. They were just so strange and I didn't know how to put the words to it. And then I didn't want to be seen as a victim as well, you know, but also didn't want to be seen as like toxically. You know, like soup, like like. I wanted to be honest. You know what I mean yeah, hot. You know, like soup, like like. I wanted to be honest, you know I mean yeah, um.

Jake: 21:16

So I found a way to do that and then, many years later, when I began coaching and started my practice, I looked back at those initial instagram posts I did and I was like, all right, let's see how I structured that. And I looked at the structure of it and the language and then from that I like backed out how to get to that structure and I created a series of writing prompts and created basically like a Mad Libs with that structure in mind and then it's become this amazing tool that I love doing with clients. It's usually something we do in one or two calls, where we hop on a call, we kind of talk about it. I introduce the document, they go home, they kind of reflect on it, they do a little writing. We come back together, we pull out the most impactful points from each writing prompt and drop them into the structure of the Madlib and at the end I read it back to them as if I'm them. I'm like, hey, I'm Jen, I'm dealing with RA for this long. This is what I've learned, this is what it's felt like for me, this is what I know. Moving forward and I always end it with something like this is a really challenging experience and support means a lot.

Jake: 22:13

I ended in a way where I'm not you know, we're not asking for help, but we're just being really honest and transparent about it, and then we're opening the door to more support, you know, and then people, like you said, some people will be like I can't handle that, that's too much. Okay, that's fine, you know, we can't control that. And others might say, wow, that's really fascinating, jen, like. And others might say, wow, that's really fascinating, jen Like. I can't believe you dealt with this for that long, like, tell me more.

Jake: 22:36

You know, doing that exercise like when I read it back to them, a lot of times it ends up super emotional and in tears because of the release of the weight of it. It's just, this is such a burden to carry around, it's so heavy, and the more that we could do to lighten that load and release this burden, the more healing we can bring in. And I just think it's really, it is really powerful to share what's going on and to move past that fear and to own it, you know, and to do it in an honest way is so healing and important.

Jen: 23:06

That is an incredible activity to do and such a unique writing prompt to come up with. I love that.

Jake: 23:12

Yeah, I'm happy to share. Yeah, or your community it's. It's. Yeah, it's been a game changer. A lot of people use it for GoFundMe. You know they're they're trying to start a GoFundMe or they've had a GoFundMe and it hasn't really taken off and then we work through this and then they take the final product.

Jen: 23:40

They put by all means, but you started out as a young man, you were 15. So there's a stigma there about you know strength and manliness. And so how did you work with that, as you were going through all of this, because you're having people look at you like, well, just man up.

Jake: 23:58

Yeah, and he can handle this dose. I mean he looks strong. I'm so glad you asked that. A lot of people don't ask that. I appreciate it. Yeah, I think I don't know. I think it just made it that much.

Jake: 24:08

I think I got a lot of people assuming I could handle certain doses of things especially. I think that was the main area it came up with. I'm just hypersensitive, as many of us in this space, and whatever a doctor is going to traditionally recommend, I would want to start with like an eighth or less of that, you know. And so I think I just I got bombarded with treatments and dosages that I just couldn't handle, just because they looked at me and said be strong, you can handle it.

Jake: 24:34

And then I think, in terms of that practice of softening, of creating space of feeling into things, maybe men traditionally aren't as encouraged to do that sort of stuff, you know, I guess I haven't really let that stop me, though I've kind of always just kind of whipped to the beat of my own drum, you know, and so I haven't really caught up in I haven't really got caught up in too much like gender stereotypes or besides, the dosage thing. I think that's the biggest way it's impacted me. I've always found a way to be vulnerable, you know, and I want to encourage other people to do the same. It doesn't matter what gender race, anything, you know people. Yeah, it's so important for any of us.

Jen: 25:15

Definitely so. How did you find your voice talking to the doctors about these dosages? Was it hard for you? Oh my God.

Jake: 25:20

Yeah, so hard, so hard. Just like the sharing part. That was tough. There's two parts to that. It's like the awareness, that intuition that we talked about, of hey, this doesn't feel right. That's one thing that, after so many years of straying away from that, was difficult. And then, even if you get to that point where you're aware this doesn't feel right, it's also difficult to communicate that Same thing. You fear that they're going to think differently of you. I learned it the hard way.

Jake: 25:45

I did many, many years of listening to whatever doctors did and I think, like many of us, because I'm a go-getter, whatever they said, I was like I'm doing this 100%, I'm not missing a dose, I'm not missing a day. It's almost like we're too good of patients, to the point where we don't even give our bodies a chance to do anything. And I was taking so many different things and so many different treatments throughout such a long period of time. There's no way to know what was helping or what was hurting. So, in terms of advocating, I think one thing is the mindset shift, of realizing you are in control of your healing and you are the boss. It's even helpful to think of it like a team or a business where you're the boss, because it sets up the scenario where, okay, if you have an employee or team member who's not cutting it, you can have a conversation with them, or you can fire them and say, hey, unfortunately, we need to move on. Have a conversation with them, or you can fire them and say, hey, unfortunately, we need to move on. You being the boss of your healing gives you that power, and anybody else myself, therapists, practitioners we're here to provide information and support you, right, but you're in charge, making the shots. If you're ever in a situation where you feel like people are dictating things for you, I would say run for the hills, right, but we're here to empower you. And so number one is make sure you feel like you are driving the car, like you are the boss of this business. That should give you the opportunity to maybe make more decisions of hey, this isn't cutting it here. And then, in terms of having that conversation, I think it can be done really respectfully and never make it about them, always use eye links. So don't say you're a horrible doctor, you're recommending the wrong thing. Say, hey, this doesn't feel right for me. I think I'm going to explore other options. Maybe we can touch base again in a couple of months and see where I'm at.

Jake: 27:27

I think one of the lines that has helped me a ton that I always tell people at the end of a doctor's appointment is to say thank you so much for all this amazing information and recommendations. I'm going to take some time to think about it and I'll get back to you about how I want to move forward. That sentence alone is huge, because so many times at the end of that appointment it's rushed. You're sitting there with all the protocols, you're sitting there with all the testing. They rush you out to say, okay, I'll see you in three months, six months, you testing. They rush you out to say, okay, I see you in three months, six months.

Jake: 27:58

You're overwhelmed, you're stressed, you feel like it's the answer. So you just spend thousands, hundreds of thousands of dollars or whatever, and then and then you get home later that day the next thing you're like what just happened, Like I don't want to take any of this and so avoid that. You could always go back, you could. You could get the supplements the next day. But just tell. Just tell them. But just tell them. Create some space in your life, take control of it and say, hey, thanks so much. I'm gonna take a moment to think about it, I'll get back to you, and that puts you in control again. It's really important.

Jen: 28:20

And how do you feel about taking someone with you to your appointments?

Jake: 28:23

I'm glad you asked. I think it's crucial. I think do whatever you need to have a better appointment. I don't mean to just like talk about my exercises, but same thing here. I was fortunate enough to work with an advocate whose job it was to come to the appointment with me and help advocate for me, and there's a lot that went down with that good and bad, but I learned what to do and not to do. And then same thing I created a document that allows us to create a one-page PDF and I bring it to every appointment that I have and my clients do the same. It's not our 20 pages of blood work, it's not scattered notes, it's one page that any practitioner can look at and scan and it's organized in a way where they can very quickly understand where you're at, where you want to be, what you've tried and what you haven't, and kind of cater their time, their recommendations to you. The idea is to make it efficient enough that you can get to their recommendation rather than being rushed out. You actually have a few more minutes left to talk about it and say, hey, why do you think this is right for me? Are there side effects? Have you seen this work for other people. So that document alone is great, especially if you show up in your brain fog or you're overwhelmed, and that's something that you can carry or someone who's coming with you can carry.

Jake: 29:36

And there's a lot more that I do around appointment prep and allowing us to have more efficient appointments, but I call it the case overview. That case overview page is amazing and I think bring somebody with you, record the appointment, if it's okay with your practitioner. That's super helpful to go back and listen to when you're not stressed. You've got to work through it. Anything that is going to help you feel more in control and be able to process what's happening in a more calm way and to make a strategic not emotional decision about what's next. Do it. It doesn't matter what that looks like, just like the meditation you might need to color while you're in the doctor's appointment to calm you down. You might need to take notes. A family member might need to take notes. Whatever it is, do it.

Jake: 30:21

And then one more thing that I'll share that I do that I haven't talked about, but it came up this week two different clients is that like tracking all of your symptoms and everything?

Jake: 30:29

I've always been very hesitant to talk about this because sometimes when we go down that route, we end up focusing on our symptoms way too much and, as we know, what we focus on grows. So I think I don't want to encourage people to spend every day tracking every single symptom, but what I've done is just I make notes whenever anything shifts, if I introduce a new supplement or I take it away, or I eat a certain food, or I notice I didn't sleep last night I just make like notes of shifting moments and I brought that to the last couple appointments I had over these past years and it's been a game changer to have on my computer and I could just when somebody the practitioner will be like well, what happened when you tried xyz? And I could just control that and search for that medication, and it jumps to that thing day and I was like, oh, this is how I reacted to it Because otherwise and that's another just small tool that helps A more strategic next step.

Jen: 31:22

I think that would be so helpful because I think a lot of us you know we either overtrack or don't track at all, and that's one thing that I have been talking to people about also, because even my own daughter she's going through her own autoimmune journey taking after her mom and, and you know, explaining to her, the rheumatologist can't help you if you aren't helping her, so you have to bring information.

Jen: 31:44

If they have nothing to go off of, how are they going to help you? And so I think these documents that you've designed genius, genius. But you, like you said you need to be tracking these changes. If your left wrist has been hurting for two years but all of a sudden it stopped after you started X, y or Z, that's something important to let them know.

Jake: 32:07

I agree. I agree, yeah, help them, help you and then also be in control when they're going to help you, to know that you are the one leading. Also be in control when they're going to help you, to know that you are the one leading Absolutely.

Jen: 32:17

I love your document ideas. These are crazy amazing. How many more documents do you have that you provide people with?

Jake: 32:23

Quite a few, yeah, it all came out of. Yeah, yeah, I have a lot of them. It's how I worked it out, and then I just started sharing it and then it became very helpful for other people. I've continued to tweak them, but, yeah, the main ones are definitely surrounding sharing your struggle, navigating appointments. And then I have one called a flare care kit, which I think is so helpful for all of us, you know, to help you do the things that you know are going to help you when you're flared, without it being overwhelming, and to make sure you're hitting on those non-negotiables. Those are the three main ones, as well as there's one more box exercise that I love for managing our energy and our boundaries.

Jen: 33:04

So if someone needs your help, if they want to get in touch with you, what is the best way to do that?

Jake: 33:09

Jake Mayer's coaching. That's the primary place of connection. I offer a free consultation call. So if any of this sounds interesting, we hop on a call for 15 minutes and it's just an opportunity to get to know each other and see if we want to work with each other, if and how I can help you, hear a little bit about your story. And then I offer on-demand one-on-one support calls. So I charge an hourly rate and I hop on them whenever people need them.

Jake: 33:37

Sometimes it's once a week, sometimes twice a week. Sometimes I don't hear from somebody for a month and then they hit a flare and they're really overwhelmed and they just need to hop on an hour call and calm themselves down and get refocused. It's very flexible and adaptable. I used to do intense coaching programs, but this is my approach now and it's yeah, you schedule the hourly call whenever you need it and I meet you where you're at. It's yeah, I'm grateful to be doing it in this way. So if you're at all interested, there's coaching on Instagram and if you'd like to hop on a free call to get to know each other and see if it's you know you're interested in working together, feel free to grab one of those slots.

Jen: 34:15

Yeah, and I'll definitely make sure we have all the links in your show notes as well Before we finish up here. Are there any resources or support that you recommend besides yourself?

Jake: 34:25

There's so much. I mean, I think, your communities yeah, it's. It's crazy because I feel like there's so much, but I also always feel there's never enough. And it's those moments, those cute moments, where you're like, oh wow, I just got this diagnosis, I just got this, where it's hard to know where to turn to, and I would just reach out to communities like Spoonie Sisters and there's a handful of other amazing communities like you have that are just open-minded, with genuine intentions.

Jake: 34:50

I think there's a lot of resources out there that, unfortunately, just want to make money or, at the end of the day, just find the people that care about truly supporting each other and are down to offer support. Yeah, you don't have to come to me, that's. What I care about is that people are feeling helped and supported. It's not a great business model, but it is where my heart is, and so, yeah, go to Spoonie Sisters, I'm sure you have plenty of resources. There's other communities like this. Connect with other people who've been through this, who are kind of heading in a direction that you would like to emulate or admire, or you think you can learn from people, and just don't be afraid to reach out. Just reach out and say, hey, I'm struggling. I need some help here, and if it's not me, if it's not Spoonie Sisters, we'll find somebody else who can support you and we'll make sure that you know, you feel you're getting supported somehow.

Jen: 35:40

Exactly, you know, I think the one thing I love about this community is everyone is ready. Well, not everyone, but most people. For the most part, everyone is willing to just be like hey, you know what? I know the person you need to talk to, you know, just tell them.

Jake: 35:57

I sent you. You'll be in good hands, so I love that.

Jen: 35:58

As we wrap up, I'd like people to get to know a little fun side of you. I mean, I feel like we've already done that, but I always like to ask some, some different, unique questions. So tea or coffee?

Jake: 36:08

I'm drinking tea right now, but I love coffee. A Cortana would be my go-to, yeah.

Jen: 36:13

See, that's a hard one. Okay, are you a morning?

Jake: 36:14

person. Are they supposed to be real quick? Okay, I'll go.

Jen: 36:17

No, you're totally fine. Are you a morning person or a night owl? Night owl, a book or a movie, sweet or savory.

Jake: 36:22

Sweet and savory.

Jen: 36:24

Chocolate or vanilla.

Jake: 36:25

Chocolate.

Jen: 36:26

Music or podcast.

Jake: 36:28

Music.

Jen: 36:28

Comedy or drama.

Jake: 36:29

Comedy.

Jen: 36:31

Okay, those are some good answers. Last thing Do you have a favorite quote or mantra that you live by?

Jake: 36:35

There's too many. I'm looking at some of my post-it notes right now.

Jen: 36:40

Pick your favorite of the day.

Jake: 36:41

I'm just going to pick one that I think is helpful for this community, which is BFA. That acronym, best Friend Advice I think is so powerful BFA and it's not mine, I can't claim credit for this, and I can't claim credit for this, and I can't remember the author that wrote about this. But because so often somebody comes to you, hey, I'm really struggling, you know, my symptoms are really flared, I don't know if I can get through work today. What would you say to them? If that's your best friend, you say it's okay, you're doing your best, take a deep breath. But we don't say that to ourselves. We think, oh, I'm not best friend advice. Think about what you would say to that best friend. Flip it over, say it for yourself and see if that happens I love it.

Jen: 37:17

I love it now, besides on instagram. Uh, I do believe you're a moderator, correct? At cabana yeah, so do you want to tell people a little bit about that?

Jake: 37:27

yeah, I love it. Cabana is an amazing community and the the background of how I got involved is through rare rare disease community, um right, and so another great place to go to support, and it's a mental health platform that helps people feel heard and connected and get actionable strategies to improve their mental health. You know, and I'm grateful that for two years now almost two years I've been moderating there, so I think there is an opportunity at the time of this recording for people with chronic illness to join this for free, which is amazing because that has not always been the case, but rare disease has created that opportunity.

Jake: 38:02

You can join Tabata for free, and Jen and myself we lead or moderate sessions with group sessions a couple of times a week, whatever. It's pretty much a group Zoom call, but it's an anonymous setup to help people feel comfortable, especially if that helps you feel more comfortable. You're not on camera. You can talk with your voice. You could also change your voice if you feel more comfortable in it, or you could just be in the chat. All you have to share is your alias. That could be your name or not. The whole point is to create a safe space where we can come together as a community and talk about things like rediscovering our identity in the face of chronic illness, found setting, grounding techniques, communication, time management. They're all really really valuable skill sets and you could be in a group setting and talk to people about it. And then there's also incredible resources that you could download worksheets, kind of like I've talked about guided meditations, mini lessons. It's an amazing, amazing space.

Jake: 38:58

It definitely is. Yeah, I mean, do you feel the same?

Jen: 39:00

Yeah, absolutely so. I'll attach a link for that too, and I definitely recommend people go find you on there as well. Cool Okay well, wow, I think we covered so much. Thank you for your patience. Thank you for joining.

Jake: 39:13

Of course. Thank you for your patience. Thank you for joining, of course, thank you.

Jen: 39:15

Jen, appreciate it. All right, my sweetie sisters. Until next time, don't forget your spoon.