Episode 58: Life, with a Splash of Lyme: Meet Forest DiMaggio
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The News Was Far From Ideal
Wendy’s guest is Forest Dimaggio and the two of them go WAY back — all the way to kindergarten! Forest shares her journey of five years, 21 doctors, innumerable misdiagnoses and zero relief before she was finally diagnosed with Lyme disease in 2010. While the news was far from ideal, the moment of diagnosis was actually a huge relief — Forest finally had an answer that made sense. And while there was genuine relief in having the answer, there was also grief and feelings of loss with her diagnosis. Forest dealt with extreme feelings of loneliness and a bunch of life changes that happened quite quickly, one atop another. There was treatment, the physical and neurological side effects of that treatment, changes in her living situation and in her relationships. |
Wendy talks with Forest about her journey with Lyme disease.
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Ultimately, she embraced this new identity, even changing her name to suit.
In this conversation with Wendy, Forest shares words of wisdom for others who might be struggling with a life-changing diagnosis. If you or someone you love could benefit, please find Forest’s podcast, Life, with a Splash of Lyme, and share it far and wide.
You are Invited
If you're ready for some tools to navigate your own feelings of grief and loss, contact Grief Coach Wendy Sloneker for a complimentary consultation. You'll find her at her website, wendysloneker.com.
In this conversation with Wendy, Forest shares words of wisdom for others who might be struggling with a life-changing diagnosis. If you or someone you love could benefit, please find Forest’s podcast, Life, with a Splash of Lyme, and share it far and wide.
You are Invited
If you're ready for some tools to navigate your own feelings of grief and loss, contact Grief Coach Wendy Sloneker for a complimentary consultation. You'll find her at her website, wendysloneker.com.
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Full Episode Transcript
Wendy Sloneker
You are listening to the Heart Healing from Loss podcast with Wendy Sloneker. This is episode 58. Everyone want you to meet Forrest DiMaggio. She has a podcast called life with a splash of lime. Welcome, Forrest.
Forest DiMaggio
Oh my goodness. Thank you so much, Wendy. I'm super happy to be here. It feels really good. Thank you.
Wendy
I'm delighted you're here. And I'm so glad that you are here to not only to share a little bit about your podcast. So when we do that, when we say lime, we are talking about LYME. This is not a margarita podcast. This says something else entirely. So I'm so glad and grateful and a welcome you to, to hear. And I'd love to hear a little bit more about your story and your journey. Before that though. You and I have history. We went to sleep together and I know it was high school but I was thinking just before the episode I was like, was it also junior high and grade school? Because it could have been we didn't know each other very well at all. But we knew more each other.
Forest
Yeah, yeah, I think we did you go to park early went to Park. We went to Park and so did you go there? Yeah. Shut. Yeah. Yes. If we,
Wendy
okay. We spent our entire like, up until high school. Okay, kindergarten at Sutter as well. Were you there?
Forest
Kindergarten, etc. as well? Yes. Did you have Mr. Cooper? Okay.
Wendy
So we're finding so much out about each other. Like, you had reached out a few years ago when you were doing some writing. And then we had just been connected since then. But now I'm, I'm just so glad to like continue to connect and get to know you. Thank you for being here.
Forest
Me too. I always you know in high school had it was just you're just a cool person in high school and we didn't really know each other but I know of you you know. And it just yeah, you have this cool demeanor. You were just kind you Yeah. Oh my gosh, smart.
Wendy
You were witty and kind of an athlete.
Forest
And weird. Yeah,
Wendy
I was read like one of the like, first alternative haircuts that I recall. Oh, boy, that's a Wayback Machine. Glad, so like life with a splash of lime. Like, how did your journey around Lyme disease even start and like, Where were you what happened? What? I'd love to just know a little bit and normalize for those who are either recently diagnosed or struggling with a diagnosis. Anytime, like, tell us a little bit about whatever you want.
Forest
Yeah, so you know, Lyme disease is an epidemic. Over 500,000 people a year are being diagnosed with Lyme disease. And for my story, it's like everybody that I know who has chronic or late stage Lyme disease has my story where you've seen doctor after doctor after doctor, I've seen 21 doctors. And I was diagnosed with MS. Als Lou Gehrig's disease and a tumor what?
Wendy
So that yes, yeah, like and those would be missed diagnoses. Because like the real diagnosis was Lyme. Oh my gosh,
Forest
I know. I know. It's crazy. Once you go down that rabbit hole, it is insane. So it's been around that we've know of since the 1970s. It was found in Lyme, Connecticut. And there's still not a known test, like a reliable test nor a reliable cure. So we're kind of all these little guinea pigs running around trying to figure out how to cure it or in it affects people completely different, right?
And there's different types of Lyme, there's the neurological, there's the Lyme that like your joints, the line that like your organs. So I had the neurologic Lyme and I was diagnosed in 2010. But my symptoms started at in 2005. And when I was diagnosed my life just what you know, because I came from a very athletic background, I was doing marathons and Iron Man's and adventure racing and dancing until the sun came up, you know, and very active and very social. And then, yeah, things changed.
Wendy
Gosh. So before we even get there, can we go back to like, what were you experiencing? In 2005? Like between 2005 and 2010, when you were misdiagnosed for the first time, like that's its own journey and path right there in terms of like, going through the medical process, but tell me like, let's go back to 2005, 2010 What words your, your initial noticings or insights about something is different. Yeah.
Forest
So yeah, it was I was training seeing eye dogs for the blind, and nearly every trainer on the staff had an injury. So it started with my knee, I had knee pain. And I went to the doctor got an MRI, they said, Oh, you have the small effusion. Here's a knee brace. And then I started to feel like I couldn't remember things that my world became like a very foggy. I remember driving home, but I couldn't remember how I got home. I started having these neurological twitches similar to like Tourette's. And I was tired.
And when we train seeing eye dogs under blind, he, we have to wear a blindfold to test them. And I couldn't do that anymore. I would start to get really anxious, I couldn't I lose my balance. So all these little things just started to creep up. And I was thinking, well, maybe I'm just partying too much. You know, at this point, I moved back to California doing some drugs. And I thought I was just partying too much. But no, that wasn't it. And then finally, I just I couldn't do my job anymore. So I ran to the woods. I lived in the woods for a year and a half. And then I was finally diagnosed by a Lyme literate doctor.
Wendy
Wow. How do you find a Lyme literate doctor? Except right. I mean, I have a friend with like, shorten the learning curve and the process of suffering through like, it could be this good luck could be this if you tried this good luck. Ah,
Forest
My friend I was doing. I had a yoga class. I was doing yoga with this gal in town. And I missed a few classes. So she called me up. Are you okay? I told her what was going on? She said, You sound like me. And I have Lyme disease. So I watched this documentary called under under our skin, I think it was and I was watching myself. I was watched I was listening to these people talk verbatim what I was talking about. And so she suggested go see her doctor. And and that's how it also
Wendy
So by referral. Yeah. Oh, my gosh, I cannot like what were some of the things you were feeling as you were going through, like just trying to parse out what the heck it actually was. Because like those other diagnoses that you received are terrifying or very scary, and also life changing in so many different ways.
Forest
I didn't believe any of those diagnosis because I was this tough girl, right? I was just like, I don't have that, you know, it was. And then when I was diagnosed with Lyme disease, I kid you not. The doctor was sitting in front of his blinds, you know, and I had I was photophobia. So I was sensitive to the light at this time. That's another symptom. So he closed his his blinds, and there was just a glow. And when he said I'm sorry, dear, but I think you have Lyme disease and the co-infections that go with it. It was as if the choir was singing. It was this glow. And it was like finally, finally I have a diagnosis where I can understand. And I'm not losing my head, right? I've been called a hypochondriac. You're crazy. You know. So it was this opportunity to finally like sink into something like okay, this is what I have. Now what
Wendy
It sounds like, there was a resonance to that. Dr. Delivering that as well. Like, there was something that was like your body said, yeah, it's that do you feel I mean, that's what I'm getting. But I was not. I was not there. So did it feel like resonance? Did it feel like truth to your body and mind?
Forest
Absolutely. It was like I was finally able to release my shoulders and take a deep breath. That's what it felt.
Wendy
Yeah. Wow, Wow. So you mentioned and alluded to earlier that, like, you got this and everything changed. And already you had, you know, stopped doing the work that you were doing, which is its own, like loss and change. But like, can we talk a little bit about what else changed?
Forest
Everything. So I was in the cabin, right? So I in a month's time, I was diagnosed with Lyme. No, no, excuse me. I no longer could do my job. My fiance and I broke up and the landlord that we were living in the house together, was selling the house.
Tell it to the woods, right. Yeah, it was, it was one of those awkward, it was one of those times in life where it's just like, you must change. You know. And so I was in the woods living on in a cabin. And when I was diagnosed, I was a year into it year and a half into living in the woods. And now treatment, now he's going through treatment and treatment when you kill the lyme, the spirochetes that's what they're called, they release a toxin, and you get even more so. So I was down to 98 pounds, I lost my hair, I had sludge in my gallbladder. I was weak, I was confused. I was lost. But I was trying to figure out like, what was what was going on? Why was this happening to me?
So all of those things changed the big things in your life, right? You no longer in a relationship, you no longer working, your physical body is changing. And then I changed my name. You know, my name was Dina and I changed it to Forest. And I changed it at a time where it was the weirdest thing, Deena just didn't fit anymore. It just it felt weird. And then I was living in the forest and the forest is all take this name. And I was like, No, I can't take that name. It's too mighty. And the forest does not take this name, and give to people what the forest is given to you. Wow.
And so when I took this, there was this sense of nourishment that came to me because Dina was she was hard. She was athletic. She was not sensitive. Now Forest is sensitive, she wants to nourish her body. She wants to care for herself. So so that changed. And it was just everything in my life started to become a lesson. And I was in school. And I was learning my traumas, I was learning my, you know, Wounded Child, who she was and what she how her role was. It was it's been an intense journey. But I wouldn't change one single day. Oh, wow.
Wendy
Wow. So you're clearly in a like positive. And this was an opportunity, like you had to complete identity shift. And all of your days probably didn't feel like today. Like might have been tough to see this as an opportunity. So can you can you normalize? Like, what that was like as you were going through if it was like, like, a season of what the F? What as soon as you were in this sort of like life school in the forest, like were you? Were you living in the cabin the entire time? That you were oh my gosh, that's a yes.
Forest
Yes. So I was there. And for the first time in my life, I was by myself. And it happened to be during the time where I then I was diagnosed, right. So that was another transition to get used to but I have I think this innate positive positivity built inside of me. So I, I stay positive, you know, and to the point where I would be like, Girl, your positivity is driving me mad. Let me be sad. Let me be mad, you know, like, stop with all this. Because when you're by yourself for so long, you know, you have to feel comfortable sitting with yourself on the couch. And I was just like, you know, the positivity was just driving me mad because of how intense everything was. But then as I would look at the positivity again, it's like that saved my life. You know, the humor that I had, surrounding all of this saved my life.
Wendy
How did you identify the humor? How did you identify like, did you have people around at some points? I mean, it's it's very specific decision to choose to live by yourself in a cabin in the woods. So how did you incorporate or identify humor, like throughout
Forest
I think it was, because what I was going through was so intense that I just it was, I don't know why it was humorous to me, it was just, is this for real? Is this actually what is happening right now? Is this who I am now, you know. And I do have to say there have been, you know, challenging times, because, for me, the one thing that I had a hard time understanding is my title. We've been conditioned as young kids to have titles, right, your grade school or your daughter, your friends. Now you are seeing eye dog, instructor, your dolphin trainer, you have these titles, and I didn't have a title anymore.
So who am I? Who am I? I don't want to be a sick person. You know, and so who am I and that, I think, raises still to this day, a lot of self confidence issues, especially when you go into a public setting when the third or fourth question is what do you do for a living right with people that you don't know? And I was embarrassed before I was like, No, I trained dolphins, you know, like I'm, you know, guide dog instructor. I'm big now. It's like, Oh, my God, I'm small. I'm on disability. I don't have you know, a job. So who am I? Huge. So that was that was the hardest thing to get through is this ability to figure out who I was a missed all of this.
Wendy
Yeah. What did you come up with? Because it's not I mean, it's not about the title.
Forest
Yeah, so I've come up with I think this which is, I'm a human being here on planet Earth, just experiencing her experiences.
Wendy
High Ten! Like, high ten. Yeah. Yeah. Wow. I would love to hear like, what, what is it that you would offer or share to people who are like struggling with their diagnosis of Lyme and just like, sort of trying to navigate like, what is it? What kind? Is it? What the heck is this symptom? What?
Forest
That's a good question. I would say, to hang in there. I would also say find people who will listen to you. Because a lot of us with Lyme disease, we look fine. We look healthy. There's nothing wrong with us, but the inside of us is a decaying mess. You know, the number one reason for death upon Lyme disease people is suicide. I did not know that makes you crazy? Oh, it makes you crazy. You are in a state of full. Your just you're not there your body is on planet Earth. But your mind is just not there.
Wendy
Is that the fog we're mentioning? Is that just sort of like not here not present not feeling grounded or alive inside your living body? Is that a way to say?
Forest
Yeah, I think yeah, I think that's perfect. It's like you do feel there's a sense of numbness, a deadening sense in your body. And I lost some friends, you know, because of it. The friends who would say, you know, you're not reaching out more, you need to reach out more. So I'd be like, I'm dying here. I am dying. I'm literally dying, you know. And so I feel like finds people in your community that will listen to you. I know when I talk to somebody with Lyme disease, you have this like, this language that you are seen, you are heard you are loved, you are understood, you know.
And so I would say reach out to people who, you know, have the same thing that you're going through and realize that people have a tolerance, they have a cap when it comes to dealing with another person's disease or illness. And that's okay, right. So I feel like finding and understanding the people that are around you and understanding what roles they play in their in your life and not to become disappointed if somebody is not playing the role that you want them to play.
Wendy
Sometimes people are unavailable, because they don't, they don't know what to do. They don't know how to act. They don't know what you need. And they feel awkward. So they tried it like okay, we need to like move along because awkward now I know I don't know what to do. I don't know The it's not about you or the person with the diagnosis, it's that they have come to the end of what they know. They don't know what to do. We have not been trained.
Forest
I absolutely before I was diagnosed, and before I went into this whole journey, I was like, somebody has depression, like, how do you have depression? Like we're living on this planet earth? How can you have depression, you've got all your needs met, you know, what is this all about? And then I got depressed.
And I was like, oh, yeah, this is some heavy stuff, you know. So having this this illness, and being on this journey, I've created so much empathy and compassion, you know, and so I understand like, where people are, like you said, they're not available, you know, because it is different. Definitely hard to understand what somebody's going through if you've never gone through
Wendy
Anything similar at all. Yeah, for sure. So in the interest of clarification, because there have been a couple of like, hey, like, what, this is where I don't know enough about Lyme disease when you were saying, you were referring to Lyme disease makes you crazy? Is it? Can Lyme disease, like result in a mental illness because of the spirochetes?
Forest
Yes. So they the spirochetes can break the blood brain barrier, and then they burrow holes in your brain. Okay, now, so that's the where I have like the neurological twitches. I couldn't remember anything. I think remembering is the weirdest thing, you know, driving, like, how do I get back home? Oh, yeah, it's just, it's just like, everything stops. I've had my car at this point, when I was diagnosed, it was like 13 years or 12 years. And I'd always check my oil when I'd go back to the Bay Area. And I opened up the hood, and I couldn't figure out what the oil thing was the oil stick. And have had been doing this for 13 years. And he couldn't remember which one, even the one that said oil on it, I still didn't know which one it was. So I think it just navigating through that just makes you try to I don't know it. It makes you crazy makes you uncomfortable in your human.
Wendy
And it can be so scary because like, it's something that you can't really like make yourself do like pick up a ball or put on your glasses. This is not something you can sort of like willing yourself to do. This is like your mind is impacted. And so this is where it's people can become ashamed. They can be embarrassed, they can feel like something worse is happening when it's already also bad enough. Like that part of our brain that's just designed to assess for threat is starting to light up.
Scary, real scary. And so the other part when you were like reaching out, or friends were saying that you weren't reaching out enough and he were saying I'm dying. Was that a sense? Like can Lyme disease kill a person? Not? I mean, if it's naturally like unattended or untreated? Is death a result of Lyme?
Forest
Yeah, it can be a fatal disease. It affects your heart a lot. And again, it affects your brain, your organs. You know, even though there is it's been around for a long time and it's an epidemic. There's still not a lot of research. You know, it's a weird it's a weird, it's a weird disease when you get when you get to that, you know, wormhole of it. And a lot of doctors don't believe that there is such thing as late stage Lyme disease. However, there are biofilms that create a protection around, you know, the Lyme so that means that it is a long term. It's been in your body for a long time. You Yeah, some doctors believe Oh, we don't have Lyme disease in our state, you know, like gosh, so you don't have Lyme disease. misdiagnosis is such a common thing with people with Lyme disease.
Wendy
So second and third. Opinions are like your first kind of step if you're beginning this journey,
Forest
or 21 or 21 doctors 24
Wendy Sloneker
oh my gosh, that is so tremendous. What a wild. Yeah, wild ride.
Forest
It is wild.
Wendy
Tell me a little bit about where you're at right now. Like what's the where are you at in your journey with this condition and your podcast?
Forest
Um, where I am, which I wish I can say I am in a really good space, but I'm not I'm still trudging through the trans trenches. I still have crippling fatigue. Right now I'm dealing with my gut issues, which is called SIBO, small intestinal bacterial overgrowth, which a lot of people with Lyme disease have, because the little motor of your intestines, they get paralyzed. So it's the food just sits there and ferments and gets in a lot of bad bacteria. So I'm dealing with that now.
And yeah, I'm, you know, there's this social anxiety that I'm still dealing with, you know, it's still dealing with Who am I in a in a more broader sense? I mean, I know that I've told you I was this human on, you know, planet Earth, but who am I? What are my likes, what are my passions? It just feels like I have an empty warehouse, in my head, you know? So it's like, I don't know what I like, I don't know what my passions are.
And I don't know if I'm going to be able to see those, you know, after I get over the line is the line blocking it, I don't know, you know, so it's day by day for me. And that's when I created I wanted to create a podcast for two reasons, one, to share my stories and to understood, hopefully, let people know that they're not alone. And also, winter in the Pacific Northwest is pretty dark and gloomy. And I was trying to figure out how to do something to help me not go down the depression, darkness. Right.
And so I thought, Well, why don't I do this podcast also, because I don't really interact with people much I felt that my throat was closing up, like I wasn't talking to as much so I thought, okay, let's just do this podcast, you know, and see where it goes. And, and I understand, like, the whole idea of like, you know, just do your creative outlets for yourself. And so I was like, Yeah, I'm gonna do it. I'm gonna, you know, disregard all of this, like, well, you have nothing to say, you know, who's gonna listen
Wendy
Which is in your mind? Right? Like, that wasn't outside that was inside, right? So yeah. Yeah. Amazing. And so yeah, so you're a few episodes in to live with a splash of lyme. And how are you liking it?
Forest
I like it. I think I just recorded episode seven, or is it episode eight? Yeah, on gratitude. It was fun. Because yesterday was I woke up feeling like poopoo caca. It was just like, I'm not grateful for anything. Let's do a podcast about it. And let's talk about gratitude. And so as I was talking about gratitude, it totally shifted my perspective. Oh, I am grateful, you know, so I loved that I had that outlet at that moment to go to and to kind of get me out of my funk.
Wendy
Amazing. Amazing. Yeah. What else have I not? What have I not asked that you need people to know about?
Forest
Um, I think maybe how you can get Lyme disease. Okay, so media tells us we get it from the deer tick, and the deer and then so when we get this, it's a bacteria. When the tick bites us, the bacteria goes into our bodies. However, what is not really told very much is that you can get it from humans as well, really.
So the spirochetes have been found in vaginal secretions, semen and mother's breast milk. Mothers can pass the Lyme disease to their unborn child. Wow. When they're pregnant, and I think that because it is a vector borne disease. The vectors are mosquitoes biting flies, ticks, fleas, I think you can my opinion, I think you can get it from them as well. Yeah, so. So all these different ways you can get it but that's not really talked about, you know, one doctor, I'd ask like, Can I pass this off to my partners, you know, during sex, and one doctor was yes, the other doctor was no. So it's just still like, way up in the air. As far as research.
Wendy
Wow. That's thank you for for noting that. And thank you for, you know, thank you for letting us know, too, that there were so many people who are so affected by Lyme disease that, you know, there's a sense of exit by suicide and that's Really, it sounds like it would be something lonely to navigate without somebody else who really is willing to listen or who gets it and has had that journey in common.
Forest
Yeah, I think any illness right is pretty lonely. And because you're feeling isolated, you're always have to take a pill. You're different was, you know, yeah.
Wendy
Yeah, it was true in in recovery rooms as well, like when I started hearing other people's telling my story. Oh, wait a minute. Maybe. Maybe there's somebody else who is around who gets it.
Forest
Yeah, I love Yeah. So. Yeah, thank you. I do too. At first, I wasn't very thrilled about talking about it. Because I feel like the more I talk about it, the more I'm going to be sick, you know. But I had to get over that and, and just realize that sharing your story, you're going to connect with a lot of other people who have similar stories, even people who are on a healing journey. You know, I there's this one podcast that I did about when you're on a healing journey, you're on a hero's journey, you know, you're going through your hero's journey. And I think that you can, we can resonate with one each other with each other, and bond with each other through our stories.
Wendy
Agree, so beautiful. For us, I'm so glad to reconnect after a lot of school years that we sort of knew each other.
Forest
I'm so happy to and I thank you so much. You know, your resources and your kindness and your time. Thank you so much
Wendy
Amazing, and go check out for us podcast as well Life with a Splash Lyme. Thank you. We're gonna see you next time.
Hi, this is Wendy, thank you so much for being here and spending time with me for you. Yeah, the whole purpose of walking through grief and loss is to find out how to feel better. Did you know there are tools and skills to be learned about how to do this? Yeah, for real, and I do it.
Let's get on a connection call. It's a 45 minute Free call. We'd love to offer to you when you're ready. And we'll just see if we'd be a good fit to work together. If you're ready for a little more support, and not less, and if you're ready to feel a little bit better. And to find out and how to learn these tools and skills. I'm ready for you. Reach out through my website.
Connect with me directly through [email protected] and we'll set it up. Heck yeah, we will. All right. Till then take really good care. Bye bye
You are listening to the Heart Healing from Loss podcast with Wendy Sloneker. This is episode 58. Everyone want you to meet Forrest DiMaggio. She has a podcast called life with a splash of lime. Welcome, Forrest.
Forest DiMaggio
Oh my goodness. Thank you so much, Wendy. I'm super happy to be here. It feels really good. Thank you.
Wendy
I'm delighted you're here. And I'm so glad that you are here to not only to share a little bit about your podcast. So when we do that, when we say lime, we are talking about LYME. This is not a margarita podcast. This says something else entirely. So I'm so glad and grateful and a welcome you to, to hear. And I'd love to hear a little bit more about your story and your journey. Before that though. You and I have history. We went to sleep together and I know it was high school but I was thinking just before the episode I was like, was it also junior high and grade school? Because it could have been we didn't know each other very well at all. But we knew more each other.
Forest
Yeah, yeah, I think we did you go to park early went to Park. We went to Park and so did you go there? Yeah. Shut. Yeah. Yes. If we,
Wendy
okay. We spent our entire like, up until high school. Okay, kindergarten at Sutter as well. Were you there?
Forest
Kindergarten, etc. as well? Yes. Did you have Mr. Cooper? Okay.
Wendy
So we're finding so much out about each other. Like, you had reached out a few years ago when you were doing some writing. And then we had just been connected since then. But now I'm, I'm just so glad to like continue to connect and get to know you. Thank you for being here.
Forest
Me too. I always you know in high school had it was just you're just a cool person in high school and we didn't really know each other but I know of you you know. And it just yeah, you have this cool demeanor. You were just kind you Yeah. Oh my gosh, smart.
Wendy
You were witty and kind of an athlete.
Forest
And weird. Yeah,
Wendy
I was read like one of the like, first alternative haircuts that I recall. Oh, boy, that's a Wayback Machine. Glad, so like life with a splash of lime. Like, how did your journey around Lyme disease even start and like, Where were you what happened? What? I'd love to just know a little bit and normalize for those who are either recently diagnosed or struggling with a diagnosis. Anytime, like, tell us a little bit about whatever you want.
Forest
Yeah, so you know, Lyme disease is an epidemic. Over 500,000 people a year are being diagnosed with Lyme disease. And for my story, it's like everybody that I know who has chronic or late stage Lyme disease has my story where you've seen doctor after doctor after doctor, I've seen 21 doctors. And I was diagnosed with MS. Als Lou Gehrig's disease and a tumor what?
Wendy
So that yes, yeah, like and those would be missed diagnoses. Because like the real diagnosis was Lyme. Oh my gosh,
Forest
I know. I know. It's crazy. Once you go down that rabbit hole, it is insane. So it's been around that we've know of since the 1970s. It was found in Lyme, Connecticut. And there's still not a known test, like a reliable test nor a reliable cure. So we're kind of all these little guinea pigs running around trying to figure out how to cure it or in it affects people completely different, right?
And there's different types of Lyme, there's the neurological, there's the Lyme that like your joints, the line that like your organs. So I had the neurologic Lyme and I was diagnosed in 2010. But my symptoms started at in 2005. And when I was diagnosed my life just what you know, because I came from a very athletic background, I was doing marathons and Iron Man's and adventure racing and dancing until the sun came up, you know, and very active and very social. And then, yeah, things changed.
Wendy
Gosh. So before we even get there, can we go back to like, what were you experiencing? In 2005? Like between 2005 and 2010, when you were misdiagnosed for the first time, like that's its own journey and path right there in terms of like, going through the medical process, but tell me like, let's go back to 2005, 2010 What words your, your initial noticings or insights about something is different. Yeah.
Forest
So yeah, it was I was training seeing eye dogs for the blind, and nearly every trainer on the staff had an injury. So it started with my knee, I had knee pain. And I went to the doctor got an MRI, they said, Oh, you have the small effusion. Here's a knee brace. And then I started to feel like I couldn't remember things that my world became like a very foggy. I remember driving home, but I couldn't remember how I got home. I started having these neurological twitches similar to like Tourette's. And I was tired.
And when we train seeing eye dogs under blind, he, we have to wear a blindfold to test them. And I couldn't do that anymore. I would start to get really anxious, I couldn't I lose my balance. So all these little things just started to creep up. And I was thinking, well, maybe I'm just partying too much. You know, at this point, I moved back to California doing some drugs. And I thought I was just partying too much. But no, that wasn't it. And then finally, I just I couldn't do my job anymore. So I ran to the woods. I lived in the woods for a year and a half. And then I was finally diagnosed by a Lyme literate doctor.
Wendy
Wow. How do you find a Lyme literate doctor? Except right. I mean, I have a friend with like, shorten the learning curve and the process of suffering through like, it could be this good luck could be this if you tried this good luck. Ah,
Forest
My friend I was doing. I had a yoga class. I was doing yoga with this gal in town. And I missed a few classes. So she called me up. Are you okay? I told her what was going on? She said, You sound like me. And I have Lyme disease. So I watched this documentary called under under our skin, I think it was and I was watching myself. I was watched I was listening to these people talk verbatim what I was talking about. And so she suggested go see her doctor. And and that's how it also
Wendy
So by referral. Yeah. Oh, my gosh, I cannot like what were some of the things you were feeling as you were going through, like just trying to parse out what the heck it actually was. Because like those other diagnoses that you received are terrifying or very scary, and also life changing in so many different ways.
Forest
I didn't believe any of those diagnosis because I was this tough girl, right? I was just like, I don't have that, you know, it was. And then when I was diagnosed with Lyme disease, I kid you not. The doctor was sitting in front of his blinds, you know, and I had I was photophobia. So I was sensitive to the light at this time. That's another symptom. So he closed his his blinds, and there was just a glow. And when he said I'm sorry, dear, but I think you have Lyme disease and the co-infections that go with it. It was as if the choir was singing. It was this glow. And it was like finally, finally I have a diagnosis where I can understand. And I'm not losing my head, right? I've been called a hypochondriac. You're crazy. You know. So it was this opportunity to finally like sink into something like okay, this is what I have. Now what
Wendy
It sounds like, there was a resonance to that. Dr. Delivering that as well. Like, there was something that was like your body said, yeah, it's that do you feel I mean, that's what I'm getting. But I was not. I was not there. So did it feel like resonance? Did it feel like truth to your body and mind?
Forest
Absolutely. It was like I was finally able to release my shoulders and take a deep breath. That's what it felt.
Wendy
Yeah. Wow, Wow. So you mentioned and alluded to earlier that, like, you got this and everything changed. And already you had, you know, stopped doing the work that you were doing, which is its own, like loss and change. But like, can we talk a little bit about what else changed?
Forest
Everything. So I was in the cabin, right? So I in a month's time, I was diagnosed with Lyme. No, no, excuse me. I no longer could do my job. My fiance and I broke up and the landlord that we were living in the house together, was selling the house.
Tell it to the woods, right. Yeah, it was, it was one of those awkward, it was one of those times in life where it's just like, you must change. You know. And so I was in the woods living on in a cabin. And when I was diagnosed, I was a year into it year and a half into living in the woods. And now treatment, now he's going through treatment and treatment when you kill the lyme, the spirochetes that's what they're called, they release a toxin, and you get even more so. So I was down to 98 pounds, I lost my hair, I had sludge in my gallbladder. I was weak, I was confused. I was lost. But I was trying to figure out like, what was what was going on? Why was this happening to me?
So all of those things changed the big things in your life, right? You no longer in a relationship, you no longer working, your physical body is changing. And then I changed my name. You know, my name was Dina and I changed it to Forest. And I changed it at a time where it was the weirdest thing, Deena just didn't fit anymore. It just it felt weird. And then I was living in the forest and the forest is all take this name. And I was like, No, I can't take that name. It's too mighty. And the forest does not take this name, and give to people what the forest is given to you. Wow.
And so when I took this, there was this sense of nourishment that came to me because Dina was she was hard. She was athletic. She was not sensitive. Now Forest is sensitive, she wants to nourish her body. She wants to care for herself. So so that changed. And it was just everything in my life started to become a lesson. And I was in school. And I was learning my traumas, I was learning my, you know, Wounded Child, who she was and what she how her role was. It was it's been an intense journey. But I wouldn't change one single day. Oh, wow.
Wendy
Wow. So you're clearly in a like positive. And this was an opportunity, like you had to complete identity shift. And all of your days probably didn't feel like today. Like might have been tough to see this as an opportunity. So can you can you normalize? Like, what that was like as you were going through if it was like, like, a season of what the F? What as soon as you were in this sort of like life school in the forest, like were you? Were you living in the cabin the entire time? That you were oh my gosh, that's a yes.
Forest
Yes. So I was there. And for the first time in my life, I was by myself. And it happened to be during the time where I then I was diagnosed, right. So that was another transition to get used to but I have I think this innate positive positivity built inside of me. So I, I stay positive, you know, and to the point where I would be like, Girl, your positivity is driving me mad. Let me be sad. Let me be mad, you know, like, stop with all this. Because when you're by yourself for so long, you know, you have to feel comfortable sitting with yourself on the couch. And I was just like, you know, the positivity was just driving me mad because of how intense everything was. But then as I would look at the positivity again, it's like that saved my life. You know, the humor that I had, surrounding all of this saved my life.
Wendy
How did you identify the humor? How did you identify like, did you have people around at some points? I mean, it's it's very specific decision to choose to live by yourself in a cabin in the woods. So how did you incorporate or identify humor, like throughout
Forest
I think it was, because what I was going through was so intense that I just it was, I don't know why it was humorous to me, it was just, is this for real? Is this actually what is happening right now? Is this who I am now, you know. And I do have to say there have been, you know, challenging times, because, for me, the one thing that I had a hard time understanding is my title. We've been conditioned as young kids to have titles, right, your grade school or your daughter, your friends. Now you are seeing eye dog, instructor, your dolphin trainer, you have these titles, and I didn't have a title anymore.
So who am I? Who am I? I don't want to be a sick person. You know, and so who am I and that, I think, raises still to this day, a lot of self confidence issues, especially when you go into a public setting when the third or fourth question is what do you do for a living right with people that you don't know? And I was embarrassed before I was like, No, I trained dolphins, you know, like I'm, you know, guide dog instructor. I'm big now. It's like, Oh, my God, I'm small. I'm on disability. I don't have you know, a job. So who am I? Huge. So that was that was the hardest thing to get through is this ability to figure out who I was a missed all of this.
Wendy
Yeah. What did you come up with? Because it's not I mean, it's not about the title.
Forest
Yeah, so I've come up with I think this which is, I'm a human being here on planet Earth, just experiencing her experiences.
Wendy
High Ten! Like, high ten. Yeah. Yeah. Wow. I would love to hear like, what, what is it that you would offer or share to people who are like struggling with their diagnosis of Lyme and just like, sort of trying to navigate like, what is it? What kind? Is it? What the heck is this symptom? What?
Forest
That's a good question. I would say, to hang in there. I would also say find people who will listen to you. Because a lot of us with Lyme disease, we look fine. We look healthy. There's nothing wrong with us, but the inside of us is a decaying mess. You know, the number one reason for death upon Lyme disease people is suicide. I did not know that makes you crazy? Oh, it makes you crazy. You are in a state of full. Your just you're not there your body is on planet Earth. But your mind is just not there.
Wendy
Is that the fog we're mentioning? Is that just sort of like not here not present not feeling grounded or alive inside your living body? Is that a way to say?
Forest
Yeah, I think yeah, I think that's perfect. It's like you do feel there's a sense of numbness, a deadening sense in your body. And I lost some friends, you know, because of it. The friends who would say, you know, you're not reaching out more, you need to reach out more. So I'd be like, I'm dying here. I am dying. I'm literally dying, you know. And so I feel like finds people in your community that will listen to you. I know when I talk to somebody with Lyme disease, you have this like, this language that you are seen, you are heard you are loved, you are understood, you know.
And so I would say reach out to people who, you know, have the same thing that you're going through and realize that people have a tolerance, they have a cap when it comes to dealing with another person's disease or illness. And that's okay, right. So I feel like finding and understanding the people that are around you and understanding what roles they play in their in your life and not to become disappointed if somebody is not playing the role that you want them to play.
Wendy
Sometimes people are unavailable, because they don't, they don't know what to do. They don't know how to act. They don't know what you need. And they feel awkward. So they tried it like okay, we need to like move along because awkward now I know I don't know what to do. I don't know The it's not about you or the person with the diagnosis, it's that they have come to the end of what they know. They don't know what to do. We have not been trained.
Forest
I absolutely before I was diagnosed, and before I went into this whole journey, I was like, somebody has depression, like, how do you have depression? Like we're living on this planet earth? How can you have depression, you've got all your needs met, you know, what is this all about? And then I got depressed.
And I was like, oh, yeah, this is some heavy stuff, you know. So having this this illness, and being on this journey, I've created so much empathy and compassion, you know, and so I understand like, where people are, like you said, they're not available, you know, because it is different. Definitely hard to understand what somebody's going through if you've never gone through
Wendy
Anything similar at all. Yeah, for sure. So in the interest of clarification, because there have been a couple of like, hey, like, what, this is where I don't know enough about Lyme disease when you were saying, you were referring to Lyme disease makes you crazy? Is it? Can Lyme disease, like result in a mental illness because of the spirochetes?
Forest
Yes. So they the spirochetes can break the blood brain barrier, and then they burrow holes in your brain. Okay, now, so that's the where I have like the neurological twitches. I couldn't remember anything. I think remembering is the weirdest thing, you know, driving, like, how do I get back home? Oh, yeah, it's just, it's just like, everything stops. I've had my car at this point, when I was diagnosed, it was like 13 years or 12 years. And I'd always check my oil when I'd go back to the Bay Area. And I opened up the hood, and I couldn't figure out what the oil thing was the oil stick. And have had been doing this for 13 years. And he couldn't remember which one, even the one that said oil on it, I still didn't know which one it was. So I think it just navigating through that just makes you try to I don't know it. It makes you crazy makes you uncomfortable in your human.
Wendy
And it can be so scary because like, it's something that you can't really like make yourself do like pick up a ball or put on your glasses. This is not something you can sort of like willing yourself to do. This is like your mind is impacted. And so this is where it's people can become ashamed. They can be embarrassed, they can feel like something worse is happening when it's already also bad enough. Like that part of our brain that's just designed to assess for threat is starting to light up.
Scary, real scary. And so the other part when you were like reaching out, or friends were saying that you weren't reaching out enough and he were saying I'm dying. Was that a sense? Like can Lyme disease kill a person? Not? I mean, if it's naturally like unattended or untreated? Is death a result of Lyme?
Forest
Yeah, it can be a fatal disease. It affects your heart a lot. And again, it affects your brain, your organs. You know, even though there is it's been around for a long time and it's an epidemic. There's still not a lot of research. You know, it's a weird it's a weird, it's a weird disease when you get when you get to that, you know, wormhole of it. And a lot of doctors don't believe that there is such thing as late stage Lyme disease. However, there are biofilms that create a protection around, you know, the Lyme so that means that it is a long term. It's been in your body for a long time. You Yeah, some doctors believe Oh, we don't have Lyme disease in our state, you know, like gosh, so you don't have Lyme disease. misdiagnosis is such a common thing with people with Lyme disease.
Wendy
So second and third. Opinions are like your first kind of step if you're beginning this journey,
Forest
or 21 or 21 doctors 24
Wendy Sloneker
oh my gosh, that is so tremendous. What a wild. Yeah, wild ride.
Forest
It is wild.
Wendy
Tell me a little bit about where you're at right now. Like what's the where are you at in your journey with this condition and your podcast?
Forest
Um, where I am, which I wish I can say I am in a really good space, but I'm not I'm still trudging through the trans trenches. I still have crippling fatigue. Right now I'm dealing with my gut issues, which is called SIBO, small intestinal bacterial overgrowth, which a lot of people with Lyme disease have, because the little motor of your intestines, they get paralyzed. So it's the food just sits there and ferments and gets in a lot of bad bacteria. So I'm dealing with that now.
And yeah, I'm, you know, there's this social anxiety that I'm still dealing with, you know, it's still dealing with Who am I in a in a more broader sense? I mean, I know that I've told you I was this human on, you know, planet Earth, but who am I? What are my likes, what are my passions? It just feels like I have an empty warehouse, in my head, you know? So it's like, I don't know what I like, I don't know what my passions are.
And I don't know if I'm going to be able to see those, you know, after I get over the line is the line blocking it, I don't know, you know, so it's day by day for me. And that's when I created I wanted to create a podcast for two reasons, one, to share my stories and to understood, hopefully, let people know that they're not alone. And also, winter in the Pacific Northwest is pretty dark and gloomy. And I was trying to figure out how to do something to help me not go down the depression, darkness. Right.
And so I thought, Well, why don't I do this podcast also, because I don't really interact with people much I felt that my throat was closing up, like I wasn't talking to as much so I thought, okay, let's just do this podcast, you know, and see where it goes. And, and I understand, like, the whole idea of like, you know, just do your creative outlets for yourself. And so I was like, Yeah, I'm gonna do it. I'm gonna, you know, disregard all of this, like, well, you have nothing to say, you know, who's gonna listen
Wendy
Which is in your mind? Right? Like, that wasn't outside that was inside, right? So yeah. Yeah. Amazing. And so yeah, so you're a few episodes in to live with a splash of lyme. And how are you liking it?
Forest
I like it. I think I just recorded episode seven, or is it episode eight? Yeah, on gratitude. It was fun. Because yesterday was I woke up feeling like poopoo caca. It was just like, I'm not grateful for anything. Let's do a podcast about it. And let's talk about gratitude. And so as I was talking about gratitude, it totally shifted my perspective. Oh, I am grateful, you know, so I loved that I had that outlet at that moment to go to and to kind of get me out of my funk.
Wendy
Amazing. Amazing. Yeah. What else have I not? What have I not asked that you need people to know about?
Forest
Um, I think maybe how you can get Lyme disease. Okay, so media tells us we get it from the deer tick, and the deer and then so when we get this, it's a bacteria. When the tick bites us, the bacteria goes into our bodies. However, what is not really told very much is that you can get it from humans as well, really.
So the spirochetes have been found in vaginal secretions, semen and mother's breast milk. Mothers can pass the Lyme disease to their unborn child. Wow. When they're pregnant, and I think that because it is a vector borne disease. The vectors are mosquitoes biting flies, ticks, fleas, I think you can my opinion, I think you can get it from them as well. Yeah, so. So all these different ways you can get it but that's not really talked about, you know, one doctor, I'd ask like, Can I pass this off to my partners, you know, during sex, and one doctor was yes, the other doctor was no. So it's just still like, way up in the air. As far as research.
Wendy
Wow. That's thank you for for noting that. And thank you for, you know, thank you for letting us know, too, that there were so many people who are so affected by Lyme disease that, you know, there's a sense of exit by suicide and that's Really, it sounds like it would be something lonely to navigate without somebody else who really is willing to listen or who gets it and has had that journey in common.
Forest
Yeah, I think any illness right is pretty lonely. And because you're feeling isolated, you're always have to take a pill. You're different was, you know, yeah.
Wendy
Yeah, it was true in in recovery rooms as well, like when I started hearing other people's telling my story. Oh, wait a minute. Maybe. Maybe there's somebody else who is around who gets it.
Forest
Yeah, I love Yeah. So. Yeah, thank you. I do too. At first, I wasn't very thrilled about talking about it. Because I feel like the more I talk about it, the more I'm going to be sick, you know. But I had to get over that and, and just realize that sharing your story, you're going to connect with a lot of other people who have similar stories, even people who are on a healing journey. You know, I there's this one podcast that I did about when you're on a healing journey, you're on a hero's journey, you know, you're going through your hero's journey. And I think that you can, we can resonate with one each other with each other, and bond with each other through our stories.
Wendy
Agree, so beautiful. For us, I'm so glad to reconnect after a lot of school years that we sort of knew each other.
Forest
I'm so happy to and I thank you so much. You know, your resources and your kindness and your time. Thank you so much
Wendy
Amazing, and go check out for us podcast as well Life with a Splash Lyme. Thank you. We're gonna see you next time.
Hi, this is Wendy, thank you so much for being here and spending time with me for you. Yeah, the whole purpose of walking through grief and loss is to find out how to feel better. Did you know there are tools and skills to be learned about how to do this? Yeah, for real, and I do it.
Let's get on a connection call. It's a 45 minute Free call. We'd love to offer to you when you're ready. And we'll just see if we'd be a good fit to work together. If you're ready for a little more support, and not less, and if you're ready to feel a little bit better. And to find out and how to learn these tools and skills. I'm ready for you. Reach out through my website.
Connect with me directly through [email protected] and we'll set it up. Heck yeah, we will. All right. Till then take really good care. Bye bye
