Welcome to the Exposing Mold podcast where I, Kealy Severson, Erik Johnson, and Alicia Swamy are exposing mold. Today we are here with a really special guest who has a very intense story of navigating hypersensitivity and contamination issues that you our audience may be familiar with hearing us discuss. This will be an anonymous discussion and we will not name our guests for privacy reasons. Dearest guest, right before we started recording, you were explaining how you were reacting to your own contaminated hair. Would you mind just revisiting that shortly?
I'm the Canary:Yeah, so this is all been some of this happened before I left. But we've been traveling now for eight months and we were talking about how some of the hardest hits often from people for me, because I can pick very quickly on whether or not I can handle an area and I don't stay there if I can't. But if I got a really hard hit, we have to go up and wash me off immediately and sometimes it was so bad that I couldn't touch my own hair. So if I touched my own hair, my legs would buckle, I'd start passing out and I'd hit the tub. I'd collapse in the tub. So my husband would actually have to get in the shower with me and wash my hair with soap repeatedly until I could touch it without that happening. And I think the most we've had to do is five, you know, usually by five, I can touch it without that happening.
Kealy Severson:Can you walk us through the beginning of of your story, maybe not from the beginning, I guess roll back as much as you feel as necessary for explaining. But you've said you've been on the road for eight months, or it will be next week. So what was the process or your story, or your health symptoms, or all of the above leading up to your family getting on the road and living this lifestyle of avoiding the things that you are reacting to?
I'm the Canary:Well, I don't think anybody does this unless you've exhausted every other option. And so we did I always say the breaking point was five years ago, we had gone on vacation. And we came home and I started falling apart. My body seemed to attack everything I ate, I turned gray, I lost 30 pounds in about six weeks, stopped sleeping. My husband said I looked like a meth head on my last binge. Thankfully, he didn't tell me that at the time. And I really appreciate that because nobody, nobody wants to hear that. But I just looked bad. And nobody really knew what was wrong. And somebody to this day, I do not remember who it was some group I was in online, somebody said you should check your house for mold. And so we started looking into it and found that that's a lot harder than you think it is because if you really want to make sure you don't get scammed, you better know who is coming out, and what their financial ties, how much they're gonna benefit from, you know what they're gonna do. And so we did a lot of research, my husband really had to do all that because at that point, you know, my body, like I said, was falling apart. And so he just kept digging and he found out that where we were, we could actually hire a lab and that lab was the one who did all the work for the remediation companies in our area. So we had them directly come out, because then we could get their report. I do know now that that wasn't even the full picture of what was happening. But it was a beginning. That was a starting point. And it showed us that the mold numbers, the mold counts in our house were 10 times what they were outside. And according to the lab, they were way too high outside. He said I can't even explain why but your outsides too high and your inside numbers are 10 times that. And so we started the process of you know, you think it's just about a house, you just go get another house and we left all those things. We didn't take stuff with us. So my dad actually paid to have a dumpster put in front of our house and my husband proceeded to throw out everything we own. And then we move to another location and people donated things to us. I now realize how problematic that was. But we didn't know and so we moved to a new location in the area about 15 minutes away. And that was kind of the beginning of the journey, the beginning of the fight and so that was that like I said that was fine. Actually five and a half years ago now, it was August of 2016. And we tried, you know, working with the functional doctors and doing all the things, you know, you read the books, and all that other stuff. And then finally, in 2019, my body started breaking down to a level that was far beyond anything anybody had seen, and nobody had answers. The first time I lost the ability to walk was on April, the last week of April of 2019, and I started stumbling, and then my hands started curling up and shaking, it would look a lot like Parkinson's. And then I'd have these spells like these attacks, where I would just lose the ability, and then it got to where they were more frequent and more frequent. And then they got to where they were just almost constant. And so that was, by the time we hit fall of 19. It was apparent to anybody who saw me that I was dying. And we nobody had any answers as to why and so nobody could find anything, you know, brain scans or clear autoimmune markers aren't there, you know, nobody can find anything, really. And so we found out about a clinic in Arizona, that treats mystery patients, they treat late stage Lyme, and they treat late stage cancer and then people who are just really sick, and nobody knows what's wrong with them. And so I think that was the beginning of just digging a whole lot deeper than local functional doctors. And so we did go there. And to this day, I wholeheartedly believe they saved my life. But even they said, they didn't have all the answers, they admitted that they were very willing to admit, there were things that just didn't make sense. And so we did IV treatment and detox for six weeks, and I look like a new person started walking again, got out of the wheelchair looked great. And then 20, we got back in 20, January of 20. And I started going downhill again, in this way we did go to the same house, we went to a different house, we went to a different region, we went to like we thought, okay, maybe where I was from was problematic as far as more than just, you know, like, maybe the whole region was problematic. So we moved out of that region, moved into another house. And then within six months, we see the decline again. And at that point, I had actually read part of Erik's book, while we were raising funds for me to go to treatment at that clinic. And I remember looking at my husband and saying it can't be this bad. I'm not ready for this, I can't, I can't do this. And he said, Well, we don't need to worry about that right now. Right now we're this is what we're trying, you know, we got to stay focused. And so then I went back and read it again. And it became apparent that it was gonna take a lot more work to do this.
Alicia Swamy:Thank you for your story. And as you're talking about your reaction, on the back burner, you and I have been having conversations about, you know, getting you on and, and trying to find the right time. And I know you guys are going through a lot because you are dealing with not only this, but you're also you know, homeschooling your children and trying to figure out, you know, where's the safe place for you to be, but you had sent some videos, and I really want to provide this to our audience, I want them to see and what you experienced with our daily reactions. And I wanted to ask for your permission, if that's okay.
I'm the Canary:Yeah.
Alicia Swamy:Awesome. So I'm going to go ahead and just do a screen share, and then we'll show our audience members what you have been having to deal with on the on a day to day basis.
I'm the Canary:Yep.
Alicia Swamy:I just want to say thank you so much for for allowing us to show that and I know that you know, we do have to keep your your identity private for various reasons. But I do do appreciate you sharing that and a word that comes up often in this illness, and also in this video that we shared is contamination. And I feel like this is such a big term and also a big way that you live your life is avoiding contamination. And I would love for you to speak more about that if you can.
I'm the Canary:Now yeah, so there were a few different videos there. There was one of my legs shaking that has not praise the Lord happened in a long time that when was about six months after I wrapped up treatment, that was in August of 20. And this episode started back up. So I'd have like a six month, six month and Dan by you show the clip, there was another clip in an RV. So because we've tried so many things, one of the things that we did after you know, things started going downhill again, post treatment, we thought, okay, we were gonna try one more region in our state. And so we went to a campground and use my parents RV they had an RV could use and I did get another gosh, probably four month break. I mean, I was riding bikes, I looked my color came back, I looked great and then spring hit and things deteriorated rather rapidly. And so that episode or that clip, I actually had recorded that to send that to my mold doctor and because he even even he was scratching his head and he knew there was not a doubt in his mind that this was mold, but you just it's not something he saw. And so because he'd done every every test there was he'd done the MRIs and everything. And he's like, I know, this is what it is. I just don't have the answers. So then there was another the last, I think they were the last two clips. So forgive me if I'm wrong, but I'm wearing those really tacky tights. Wear disposable clothes, which I'll get into if you guys want me to. But so because I have detoxed so much, I don't I don't think I don't think anybody. I think a lot of doctors have no idea what real detox looks like. Because we're actually doing hotels, we got a brand new travel trailer, and I ruined it in no time, the detox that's happening is just insane. It finally had actually slowed down. We're in a room right now. This is our fifth day. And it's taken us a long time to get your eight months in, like I said, But what would happen is, I would detox so much that I would get up the next morning, and I couldn't walk because I was dumping the stuff that was in me. And we could I could step right outside of that room and walk immediately, not even having washed off. And then I could turn around and I could come back down the hall and walk in that room and collapse immediately. So forget binders. That's breath and that sweat, and that's just once I think once you figure out what setting your body off, and you get clear, it just does the job itself and does what it's supposed to do. And I'm not saying you don't ever need any support for that. But I, you know, yeah, that that was from that was, that was in October or November, we were at that location. And that's how much I was dumping. And like I said that was one night, they were switching us every single day in rooms because that would happen to me, I'd wake up like that. So yeah. And then the last one was the contaminated vehicle that was actually our vehicle, when we left, we had two vehicles. That was the only one I didn't react to, I know it is not recommended. And I would never recommend anybody leave with their vehicle from their area. We had thankfully purchased that not long before. And it was either we leave with that, or we didn't get to leave, because we just didn't have the finances to change it out. We left with it and it lasted us four and a half months into avoidance. And then I finally got to a point where I had dumped enough and gotten clear enough that that's what happened when I got close to that vehicle. And we had to at that point, we had to replace it.
Kealy Severson:So one thing that I find interesting that I think is the most important, the probably the most important piece for other people who are sick is your reactions, or our boss, your reactions tell you even if, Well, let's be honest, there's no test that's that even exists that can tell you that there's something present that you're reacting to. Yeah. And you really are just living your whole entire life using your reactions to guide you on whether or not you're safe.
I'm the Canary:Yeah, but isn't that kind of hopeful? Because I don't have to walk around with some kind of test to know if I can enter in a building. Yeah. And what we're finding too, and the thing that I, I mean, I guess this is, I don't want anybody to watch this and be terrified. And I can understand how it would be because if you can be as bad as me, and I don't, I think those videos show pretty, pretty accurately how bad it was, if you can be that bad. And you can start seeing. So like now we went driving around. We're actually in the southeast right now. And I have detox more in the southeast than I did out west. But when you get to where you recognize this is what's making me sick. I feel this, you know, and you can start feeling it. I remember reading an Erik's book, where he would later on start feeling things, but it wasn't having the effect. And that's what we're starting to see now. And so I actually just wrote a blog post, titled it feels like convulsions in here. And I was sharing how something had blown through and it felt like convulsions were going to start but they never did. So we're seeing I'm seeing these huge, huge gains at only, you know, like I said next week will be eight months that are just, I don't see any doctors doing that. The people that I know that are working with the doctors, they're just not gaining. They're not and I'm not here to put down doctors because I actually think I had some great ones that were really trying and really, really care. But this is just fate. You know, once you figure out okay, these are my triggers. And I think I have found my really bad ones, then you have actually a lot of freedom because you don't have to live in fear of oh my gosh, I saw mold on that bathroom ceiling. Well, if you don't react, who cares? You got to do the initial get clear. And that part is the hardest. But once you get the initial clear, then you can go you know what we went to, we were actually exploring a state. Yes, Saturday, and we were driving around all day. We wanted to see if we can find clear spots in Florida, which is gonna make people be like well So we're driving through Florida and, and we go to this stop at a gas station because everybody had to go to the bathroom. And I get out and I walk into the building, and I walk around where the cashier is. And it was like a wall hit me. And I went, nope. And my husband said, What, and I said, I can't go in there. And it was sure and I came right back, I, you know, wiped off my face, wiped off my arms, and I was fine. And my husband, he went home to the kids, because they couldn't wait. And then they came out and I gave them all wipes, they wiped off their face their arms. And my husband was like, Oh, my gosh, that was epic mold. It actually was mold and MT both. But I didn't have to go through a reaction because I felt it before it had before it overcame me where I was going to lose everything I was wearing, and have to take a shower and all that stuff. So you get when you learn how to get clear, and you learn how to recognize these things. You actually don't have to be a victim. You don't have to sit here and go, Oh my gosh, I just saw playing go over, there's a chem trail, oh my gosh. Because what happens is you become afraid of everything. You're afraid you're afraid of every chemical, you're afraid of everything, and you just live in this constant fear. And it seems like you can't ever win. But you can win, you just have to get clear enough to start learning, oh my gosh, this is what causes my reaction. And then as I get stronger, I can feel it. Like I said, it feels like convulsions in here. They never started that night. And it was a bad night, stuff was blowing from we know where it was blowing for. And we know what it was blowing out of, the wind had shifted. So if there's a lot of hope out there, oh my gosh, there's so much hope with this illness.
Alicia Swamy:I really want to amplify something that you said. And it was that your doctors didn't understand even your mold doctors and whether they were good or bad. They just didn't understand. And that's something that's something that we see and that's why we started Exposing Mold to really cater to the hypersensitive in starting our education group. And, you know, something you mentioned, while you're talking is just more information about your environment, it seemed and really curious as to what you think is happening in the environment that is causing you to feel this way? And then I would love to hear Erik's information, because he definitely has a lot of information and theories and what he thinks is happening.
I'm the Canary:Yeah, so I can tell you, the big ones that I have found for me are definitely MT. MT is my whoa, knock me on my tail. What's interesting now though, is I can feel layers of it. Like, like I said, we were out driving Saturday. And there were there were towns we went into, and I said this would have thrown me in convulsions, even three months ago, let's get out here. And then there were others that I was like, This doesn't feel good. You know? And you can I couldn't I, I guess for anybody listening to this, when I was reading Erik's book, I couldn't fathom that I could ever get to the point where I could say, You know what, this building has mold, I can be in here eight hours, and then I got it. So I'm gonna try to make it on six. I could not, I could not grasp it. That was possible, but I'm starting to see it. So we have, you know, when you're out driving, and I'm sure you've seen this, Alicia, when you're out driving, especially out west, you can go hours without seeing anything. And so you get to a place where you can stop. Even if it's less than ideal. Sometimes you just have to make the call. And so there were places we would drive out west. And I'd be like, we'd stopped at a you know, a Holiday Inn. And we'd walk in and I was like, this has mold. And it's icky, but it's not mold that's gonna make me like immediately, you know, go down, it just doesn't feel good. I'm not going to expect to stay here and heall, but I got to sleep somewhere and I have three children in the backseat. You know what I mean? And I could make that call. So I feel like I lost my train of thought what was the question?
Alicia Swamy:Oh, I just was curious about the what you thought were the offenders whether it was a local, a bad location, or whether you feel it's just the mold or I was just curious.
I'm the Canary:Yeah. Okay. I think that once your body's compromised from that initial moldy house or really bad area, whatever it is, or all of the above that you have to find what your you know, your common denominators are and so for me, I would say MT, I would say because it seems to seems like from the people that I've talked to, MT seems to causes severe neurological stuff, but really, really epically bad mold does too. So bad mold, MT, pesticides are a friggin nightmare for me. They just they wrecked me we've had we had one place we stayed and they sprayed for bugs around the doorway and then I had to leave for like a week because if I got close to the doorway my legs would give out. FRAT wrecks me a lot but if with frat I can, I can pass through, you know, and stay in an area for like a night but I'm gonna fill it. So those are mine. As far as how we got here. I mean, I think we just have we have an insane toxic load that we come into the world with I think at this point, and then, for whatever reason, I'm not going to pretend I understand the genetics, there's some of us that just can't come out of that I can't explain how some people can live in New York City and seem to function well, or, or LA or Atlanta, that that's not something I can fathom. I think it's amazing, good for them. But we are seeing more and more and more cases, what I found really, really interesting. Like I said, a lot of my reactions are to people. And so the ones that hit me the hardest are handicapped nine times out of 10. If my husband or I see somebody that's walking with a off gate, or in a wheelchair, or whatever, we will do everything we can to get me out of that situation, because if they get too close to me, I can hit the ground. So that tells me this goes a lot farther, then what people think, because these people are obviously carrying a huge toxic load, or I wouldn't have that reaction that if this was just like, you know, I have brain lesions. And it was that simple. You know, that shouldn't happen to me. So I think I think it will probably take years and more people that are desperate and crazy enough to try something like this, to start challenging the status quo. But I think I think people have no idea how much of their illness is connected to toxic load.
Alicia Swamy:Wow, thank you for sharing that. And I would really love some secondary commentary from Erik, she throw out some terms MT, FRAT , what is all this stuff, Erik? Erik, I'm really curious. You know, it seems like you found
Erik Johnson:Well, actually, I was considered that there was a base value of some kind of super toxin, that was coming from certain types of mold, and this was like a sensitizing agent that had secondary reactivities. It essentially brings out your susceptibility to many other things. And I didn't really have any hand in making up those names. That was Lisa Petrison. I didn't see any problem with calling it a mystery toxin. Because it's a mystery. So we need to look into it. But I realized that when people started making up names and attaching them to all these different things, I thought, wow, soon they're going to run out of names because from my perspective, there's a base value of something that is opening up this hypercholinergic response, this overreaction of the nervous system. And once you've been sensitized, once your immune system is upregulated that way, you're going to start pointing at everything, everything, diesel fumes, all pesticides, glade plugins. I mean, it doesn't matter what so I didn't really see the value of trying to isolate it to all the different acronyms that you could possibly make up for these various things. When I consider the primary source is something that seems to come from Stachybotrys. Back in the early 2000s, there was a osteopath named Dr. Joseph Klein, in the sick buildings, yahoo group, who put up a terrific website and he described all this perfectly, absolutely perfectly. And he knew what the offending agent was, it was Stachybotrys, it had all these effects on him is especially the hair. I mean, that that's just amazing. What is it with the hair? He actually got his son to shave his head, he made himself a safe refuge shed that he could live in, and he talked a sudden into shaving his head before he would come visit, you know, so he wouldn't be carrying anything in on his hair. And that's whoa, I experienced that too, that a lot of us were cutting our hair extremely short, because it made it so much easier to wash. So something about this toxin, this agent, this thing from Stachybotrys has an affinity for hair, sticks to it and just does not like to go away. That's a perfect description of what's going on here and then the neurological effects, same thing, the tremors, the loss of ability to control the muscles. That's all completely consistent and during the grand opening of the Whittemore Peterson Institute in 2010, the daughter the Whittemore's who was the reason for their getting interested in creating this neuro immune Institute when hugged somebody in a wheelchair. She's greeting everybody and she gets close to this gal in a wheelchair, and just about dropped in her tracks. Now, I've been telling this girl about this for years. I mean many, many years prior to this, and she didn't quite believe me until then I'm going there it is. That's the stuff. These people they get it on and they're drenched with it and they emit this incredible toxic value. So are you going to look into this now? And they decided not to for some strange reason. Though later on ahe did choose to become a mold avoider herself but still they don't tell other people that they're suffering reactions that are consistent with this exact effect that we've described for so many years. And I took people on a mold tour, chronic fatigue syndrome history mold tour, and part of the tour was we'd actually walk into the Institute and go right up to the counter. And we could feel that people, patients diagnosed with chronic fatigue syndrome, had been in that reception room, leaned on that counter and left traces of the substance on the counter,. That to me, that's fascinating, because this is consistent with what I was trained in, in terms of nerve agent in the army. That it's the same thing it contaminates exactly that same way. So we don't have to treat it as some incredible mystery. This is a problem in need of solving and why doctors are so stubborn about listening to us, going to these places, and doing more in depth analysis of the precise circumstances that we complain about, is totally beyond me. There seems to be something lacking in their scientific curiosity. mold to be your common denominator. Can you talk about how you found that out through your experimentations? I simply went to places where people described this circumstance and compared it to my known reaction to sick buildings where Stacybotrys Chartarum was identified and when I couldn't get enough confirmation that way, because there's a million other things you can point at, I hired one of the top mold testers in Sacramento to drive up to Lake Tahoe. And he went around with me where we, I had him identify different mold colonies. Penicillium, Aspergillus, Cladosporium, various lumberyard molds, all of them, and I would stir them up, get in there, and I kind of shake him down and inhale it deliberately. And none of them really had this effect. Until we got to one particular nasty black mold growing on sheet rock. I disturbed that, I just about dropped me in my tracks with all the symptoms that that she describes. And I go, that's it. That's the stuff. What is it? Identify for me and he did. It was Stachybotrys Chartarum. So I go, Okay, now that I've isolated this as the particular mold that's capable of doing this, I know it doesn't do this all the time. But under some circumstances it does. And I've got a sample of it. How can I cross check my reactivity to make sure this is indeed the substance? Well, that was simple enough. I just took a sample up to the desert, put it down on a sheet of plastic waited until I felt good again, clear of this effect. And start doing proximity experiments where I would just get closer and closer to my little postage stamp sized sample, and see how close I could get before I would start having effects. And wow, six feet, and it was starting to nail me. So I managed to figure out, yes, there's a range to this thing. I can stay just out of range and be okay. And also, this is the stuff and it doesn't take much.
Alicia Swamy:So when she was referring to stuff blowing in on the wind, she wrote a blog post about it feels like convulsions. What is happening there, Erik?
Erik Johnson:Well, in my chapter in surviving mold, I described about flying my hang glider 1000s of feet over a burned out area of forest fire had completely devastated a place deep, deep in the mountains. It was so remote, there were no roads. And the only way to fight this fire was with aerial drops of flame retardant. And because the area had been denuded of vegetation, it was producing extremely powerful thermals, which is what a hang glider likes to get upward moving air and go up many 1000s of feet. So I thought this is great. I'm going to fly over there. And sure enough, I caught an extremely powerful thermal. But at the same time, something hit me that was exactly the same sensation as what I was used to experiencing in the sick buildings. And this was really the first time I felt this, the sensation outside of a sick building setting and what is the common denominator, what links the sensation with whatever it is that could possibly come up from the ground and hit me 1000s of feet up? I thought, well, perhaps it's the flame retardant. Perhaps the microbial colonies down there are processing flame retardant into some kind of exceptionally powerful toxin. But how could it hit me at such altitude? I mean, I'm 1000s of feet up. You would think that dilution would take it down to a level where it couldn't possibly affect me. Now we're still curious about this that I thought perhaps it was the upward moving air the violent motion of the molecules mixing with the fragments, with the spores, with the toxins that turned us into something that was bioavailable, imparting some kind of electrostatic charge. And of course, it sounds crazy. But since I needed an explanation, and all the other alternatives made me sound crazy, it seemed that these tribostatic friction, the electrostatic charging of the molecule to turn it bioavailable was a model that could possibly explain this, these charged particles interact with the lungs in such a way that instead of being trapped by our lungs defenses, they are actually repelled. And they dance around all the other mechanisms that normally stop these, these particles. And they penetrate into the blood and brain, and even though it's a kind of a crazy theory, at least I prefer it to thinking that I'm just making this up. So I looked around for other people complaining about the same thing, of extreme reactivity to molecules or some mystery substance that is born on the wind. And everywhere I go, I hear this complaint over and over again. But since doctors can't make sense of it, they discount it every time. And they are just as prepared to battle with patients and just as prepared to not look for an answer now, as they were 25 years ago. So it appears that the increased volume of complaints is not having the desired effect of getting doctors and researchers more curious. Quite the opposite. In fact, they seem even more dead set on finding psychological explanations and ignoring physiological ones.
Kealy Severson:That's honestly one of the many reasons I'm so happy to host you today and to share your story because these concepts of contamination and trusting your reactions to guide you and not necessarily having to hand over your control to a doctor's test or a mold inspectors test and really getting past that point where you understand your reactions and trusting your body. I think that's going to be the future of real health care for many of us until doctors really get on board on the back end. And it's probably going to be patients like you and us that are leading the way and living that by example and really getting these messages out there to share with others. So we're really so thankful that you've been open and willing to share your story because these concepts of having reactions to something that we don't know what it is, because we can't test it 100% or trusting your body with contamination. These are concepts that we that we live our lives by too. One thing that I find that people struggle with is having their loved ones believe them. And I feel like you have such profound immediate reactions that there's no, it leaves no question about whether or not you were really reacting to something. And I do still wonder, did your husband and you, or other people close to you, still kind of struggle through comprehending that what you were saying was real, despite having a visible reaction in what is quite often an invisible disease?
I'm the Canary:Yeah, so I think, on the one hand, we have had more of a support system than most with this illness. And it's probably part of it is because of how obvious and bad the reactions are. So all three of you, I've spoken to a lot over the past, I guess it's been over a year now. And you all have been very supportive, but I also have some friends and some family who have been amazing. And then I have some that don't buy it. I think the way that I look at it, and I'm not gonna pretend it's not hard, but I am accountable to the Lord, for what I do with my life. And I'm accountable to my family, to my immediate family, to my husband and my children. And we've had a couple of times in the past five years when it looked like we were out of options, and it was just going to be declined. And that meant I would leave for children without a mom, if I know that not everyone has the support system that I do to pick up and travel the country and find a place to go, but the Lord blessed us in that area where we were able to, and so I am I am accountable to them for what I do. And I answer to them, and to God, anyone else I cannot worry about. And I think that you guys are trying to do a lot of work to show, hey, this is real. Like, this is serious, and it's real. And this is what we think is going on. And this is what we've observed to go on. And I'm glad there are people out there doing it. I don't want to because it's war. And it's not a war that I personally want to fight. The war that I want to fight is surviving and not just surviving but thriving. And getting to you know, play with my kids. Like, I'm playing with my kids right now. And today, I got up I made breakfast, me standing by myself, my husband was not in the room. I went down with my kids by myself to homeschool them and lessons that I have planned and I got to come out and make them lunch and hurrying send them down to the playroom while you know we got to do this interview, and after we finished this interview, I will get to finish teaching them. I will not go out to the beach today because it is insanely cold. But a lot of days I get to do that. I get to exercise I get to, you know, I think for the people that are really, really struggling and really, really scared, and Erik touched on this. And I had touched on this that are afraid of everything at this point because they don't know what they're fighting. There's just so much hope that once you find the big ones, you know, Erik found that if I remember correctly, pesticides were a huge issue for him. If they weren't actually sprayed on something, if I remember correctly. I'm finding I've got like three big things that hit me hard. But you know what if I can avoid those three big things. Or if I can find what my level is of tolerance and know the things that I need to do to outpace them, or learn the seasons in which I can handle them, I can have a really full life where I actually don't think about this all the time. This is not my identity. This is my illness, is not my identity. And so I think I've worked recently and you guys have been great with us. But I've worked on like kind of removing myself from being seen because I'm tired of it being my identity, but I'm happy to encourage other people to do there's just so much hope. There's so much hope out there and it's okay if you do not understand what Erik saying because I don't. It's okay if you do not understand trichothecene mycotoxins because I don't. It's okay if you don't know exactly what mystery toxin is because nobody does. If you can learn X things are my trigger. And most people that see me today have no idea what I deal with because I actually look normal. I'm not in a wheelchair anymore. I haven't been an eight month it's rare that I collapse at this point. It's rare that I have convulsions at this point. I haven't lost the ability to talk and I don't know how long. These things are disappearing. Because I'm learning X things are my trigger. This is my level of tolerance. And it takes work and having the support is huge. But you can't worry about what other people think you won't. You won't beat this if you do. You can't.
Kealy Severson:I really love that you said everything that you said that you you can do now that you weren't able to do, how you said I get to do these things because how many people do those things and take them for granted because it's never been taken away from them, or how many people who are sick, who are not able to function to the level where they are able to do those things, and just to hear the gratitude in your voice of, it's not a burden or a chore to cook for your kids or to educate your kids doing homeschooling, it's like, I get to do this and I'm healthy, and I'm able and it's just, it's so touching to you speak like that. What do you think was the biggest factor in helping yourself understand what you were reacting to?
I'm the Canary:Look, I have a clean cut. That's, that is the hardest thing, man. I mean, you want to you want to believe it's not as bad as you might hear or read and, and that you can take maybe some valuables with you or that kind of thing. I think Erik recommends putting some things in storage if they're if they're just too hard to get rid of. And you can touch back on that later. We lost things so many times by the time he left our state that it it wasn't as hard but it is hard. So I think the first thing is getting that I think the second I will say this, the thing that has been a game changer for me, is finding someone who beat this to coach me. So that I can go, hey, you know what? I'm feeling X and I don't know if that's okay. You know, cuz you, you come out of this feeling you know, it just like horrible. And it can be really hard because I see in groups, what is X feel like? Well, different things to different people. Because we don't all have the same symptoms. We don't all have the same things going on Kealy, you and I've talked about that. And you're like, I'm feeling these things, but it's not visible. And people don't believe me, you know. So when you start going, hey, you know what, when I feel X, and I think that was not blocked to you that I'm learning that when I feel X, hey, if I just get the heck out of here before this, you know, it goes down the road and kicks in, then I'm going to be good. But having somebody who could coach me, and so I could go, oh, that's what that is. And then what my husband and I have really seen as we look back over the eight months, now that we've been on the road, and I just want to, I don't think I've said this, but we're not going to be traveling forever. So if anybody hears that, and like totally panics, that's not how the rest of my life's gonna be. It's how it is right now. But I think that the we've seen, we see patterns by looking back and going, Okay, what was happening in this climate, at this time, when I was thriving in this area? Then you get other areas and you get other areas. And when you do that you can start doing comparisons. I think it does help if you have somebody to play those ideas off of but if you don't, you could still do it, you know. And so we look back, and we see a lot of things, and I'm afraid to say any one thing that we see not because I don't want to help somebody. But I think that when you're so sick, that you latch on to everything everybody says and what may be true for me may not be true for somebody else. But you do start to see patterns. And so what we start going seeing is, you know, what if we could learn up x x x, what's the detoxes done? And we could find a climate that had that the majority of the year, three quarters of the year, I could probably do quite well, you know, you know, so it takes work and it takes you have to be willing to get slammed because it's really the only way you can learn this unfortunately. And that I think that's hard when you do get clear. And you start immediately feeling better than to get knocked down is really hard. But it's the only way I know to really figure out what your triggers are.
Alicia Swamy:Do you have like a strategy playbook you and your husband fill out from time to time that survived all the places that you visited?
I'm the Canary:We use electronically, all the notes on our phone. So like, but you know, it's interesting, too, because I'm sure you've seen this, Alicia, there are places that maybe initially they felt good and maybe they felt good because they were better than where you were coming from. But then they're no longer good enough. But maybe also they felt good because it was a different season. And so it really it can be hard to nail down what that what that thing is, you know, but we've been doing it enough and we've seen enough. I'll tell you, I'll tell you one thing like again, I go back to people because I get most of my hits from people. The thing that I found is I can find areas of the southeast a lot of it's really rough but a lot you can find some really good air you have to I think you should get clear first so you can I know what it feels like to be a little bit clearer before you go exploring. But I have found people hit me harder in the southeast than out west that's been that's been the most interesting thing. We we went to Texas in December and we've done Texas several times and everything's bigger in Texas including the toxins so you better be pretty good at avoiding, go to Texas but we went to check out an area we were curious about. We thought it had some potential and it did. But when we got there we would not have gone, had we known there was going to be a huge event when we were getting because in general, we found where there are lots of people, I do not do well. So how do we know we wouldn't have but we get there. And the parking lots are packed so much that there's overflow parking across the street. And we think, what have we done, and we're in an area where there's nothing close. So we're hours away from anything else. It's late in the evening, and we have to stay here. And nothing bad happened. In fact, I walked past all those vehicles without them taking me down all those people without them taking me down. And it was really interesting. We ended up not staying there, because there were some buildings around that were really rough, there were things we had to drive through there, were too rough to stay there. So we did end up leaving, but then we come back to our area where I've done well, and it got busy. And it wrecked me as in I was almost bedridden for a week, because of the sheer amount of people that were coming through. And their health. So we've really, it's that's been like, the most interesting thing is people out west do not hit me nearly as hard in general. There are bad people everywhere, toxic people everywhere. But in general, I get hit much harder by people in the southeast. And I don't know, it's really interesting. But you just learn these things and you learn the workarounds. And then as you learn what you need to do to continue to climb that power curve, then you don't get hit as hard, and and so you build and then the next time people come through, it doesn't take you down quite as much. You know, that's, that's really the only way that I see. To beat this, especially once you get as bad as some people do.
Alicia Swamy:Yeah, absolutely and thank you for that. And, you know, we've been talking pretty broadly about just areas and how you feel. And I'm just really curious, I have two questions. How long does it take for you to qualify a place as good or bad? And what are those symptoms that tell you that it's a danger zone?
I'm the Canary:I think at least a day, maybe two, and I think that for multiple reasons. There was a place we stayed in Arizona that I we stayed for almost two months, I believe. It was like six weeks, I did a lot of healing there. And but then I'd had to hide on the weekends. Because that particular location, a lot of people came through on the weekends, there wasn't even necessarily a destination, it was just a drive thru that is just one of those things that it's the last stop kind of coming through an area. And so a lot of people stop there on the weekends, if you just came on a Friday night, you might think it was hell on earth. But Monday through Thursday, was great. And so you will learn you, you need to learn the patterns. And then the other thing is you need to learn the patterns with storms flare stuff up. And so if you're in an area where things get really nasty with storms, but storms don't come that often because you're in the desert, then you It sounds like when you strategize and you come up with might go okay, you know, I can do this. So like we would know in that location when storms came, my legs were gonna go and I might not lose the ability to walk completely, but you guys saw the video, but you know, something like that might happen. And so we would know, on those days, I'm going to need to rest and just except that it's going to be a rough day, maybe a rough two days, you know if a storm fronts coming through, but then the sun's going to be on it's going to be 90 Tomorrow, I'm going to be surviving, you know what I mean? So you're gonna have to learn the patterns of the weather. The people, there's so many dynamics, you could also, you know, I know not, not everybody does hotels, that's what we've done. It fits well, for our family, you can have a bad room, and you could assume you're in a horrible hotel, and it's a bad unit. It you know, and you switch the next day and be like, Oh, this is fine. So there's so many variables and the way the when I mean really the way watching the way the wind blows, like if the wind blows from this direction, I feel fine. What is it? Why do I feel like death now? Oh, you know what it's blowing right past this big ag area right now. And it's making me feel really bad. And it's going to change at nine o'clock tonight when I look at the wind pattern. So I can if I can just write it out. You know, when you get in, you get in this fight or flight stuck pattern, because you've been fighting for so long. Most people by the time you know, they come along and find somebody like you guys have been fighting for years. And so they just want to make it stop. And if you if you run too quickly, you could make a huge mistake because like I said that that location was rough on the weekends. But the longer we were there, the more I climbed because I got great five days a week. It was just kind of, you know, shaky on the weekend. And then we also found that the weather patterns changed some in that location in late October. No, it was really October. And I started dropping and it it was such an apparent drop that we were like it's time to go you know we've we've maximized our time here. It's time to go. And so it really is and I wish it was as simple as I you know, had people tell me like Just tell me where to go, like it's just doesn't work that way. I mean, you guys know that it just doesn't work that way you, it seems to be based on, you know, where are you coming from? If you're coming from New York City, then you know, downtown Phoenix is probably going to feel like heaven. You know, I mean, I haven't been to downtown Phoenix, somebody's gonna take that and run with it. This is why I don't say like to say locations, but you guys know what I'm saying? It depends on the person. And it depends on, you know, what they've been exposed to, it depends on how high they are on the power a plan and you live day to day by your senses. You know, the curve, how low they are on the power curve, what season is it? And so I think that could cause a lot of people to just freeze and not do anything and shut down. And that's the wrong move. And then panicking every time something changes is the wrong move. And there really is like a middle ground. I'm very blessed to have my husband to kind of hold me down and be like, Okay, hang on, hang on, hang on, because my reaction would be like, Oh, my gosh, we got to go to die. But hang on, hang on, hang on what's changed. And we would have to sit down and talk through what's changed and really make a clear decision. Okay, it's smart. Like I mentioned, we went this past Saturday to Florida, we did that for two huge reasons. One, it was going to be busy here because there's an event, there was an event that happened this past weekend, we know when it's busy, I don't do well. So clearing out was a smart move to gains are, it's absolutely worth all of the work and all the it was overcast and yucky, which isn't bad in this location actually isn't much of an issue at all. However, if I want to know if an area is halfway decent, the best time I could check it is when there's a storm system coming in. So that's going to give me an accurate picture of a more accurate picture of how nasty an area can get. So why I wanted to check and see some locations like you know, and I knew there was like some towns that I really don't want to ever go back to again. So and then there were some areas that I was like, hey, this, this feels pretty good. And look how nasty it looks up there. So the further you get in this, the more you get to play around with that stuff, and and learn the variables and get struggle that you guys have been through. And, you know, I'm just stronger and do crazy stuff like sniff mold, like your bid on an item. I don't understand that does not sound fun to me. But you do get strong enough where you go, Oh my gosh, that's my trigger. And that and that. And then the further you get you know what, this building doesn't feel great. But I can do it for really curious, you know, a lot of people come to me or Erik or a night, I'm leaving first thing tomorrow, you know, you get you get more comfortable as you build health. And that is what I'm doing. I'm building health, I haven't been unable to do that for most of my life. But now I get to. And so I get to go, you know what, that's going to be too hard of a hit, it's not worth it. Or I can outpace this and you get to you get to do that you get to just say, oh my gosh, there's so much hope it's so encouraging. It really, really is. Kealy, and they say, I can't do this, it's too much work, I'm too sick, I don't have enough money, blah, blah, blah, XYZ, you know, what would you say to those people that are stuck, that are frozen? Support system matters so I can't discount that, I cannot discount that. I think you guys have started a group to be that for some people. And so that, you know, that can be a place they start. There are people who have to do this alone, that's just you know, the only option for them, either they just don't have family or the family's not gonna you know, do it with him or whatever. And so take whatever you have, and look at what can be my next step when I was when we had kind of exhausted everything aside from leaving our state. You know, and that was a, that was an almost five year process, we have really exhausted everything where my doctors, like all I've got left for you is chemo, or IVIG. And IVIG is not going to be covered by insurance and I have no guarantee it will work for you. And so we've exhausted everything. And we're sitting here and we're looking at our options, and we're like the option is to leave. But we couldn't leave right away, we didn't have the financial resources to leave, we didn't have we didn't know where to go. You know, we just had rough vague ideas that we just needed to get the heck out of there. But we didn't know what to do. And so there was a lot of time that was spent in prayer, and research. And I think that is the hardest place to be because you just feel so helpless. And you do just want to on the one hand, you're scared to flee and then the other hand, you just want to run, you know, and you're caught in that place and you may not have the resources, you may not have the knowledge you just don't know what to do. And the only thing that I know to do at that point is to sit back and say what can be my next step. And so for a while, the only next step I could do was to read everything I could get my hands on, and to try to look in the groups that I was in and cut out the noise and look at the people who had actually recovered and then go What did they do? Not where did they go? I want to really really emphasize that, because that's not a fair grasp. I can't just go well, Erik healed in X, so all I have to do is move there and get an apartment. It just, it doesn't work that way. What did they do? And so I had to sit back and go, what did they do? How can this fit? I am a mom, I am a mom with four children, three of which was I mean, one is grown, and so I have to look back what fits for my family, what can I do? And so research was what we could do. And then when it became we joke that God kicked us out of our state with a steel toed boots, like we had done everything we could, we tried every, like, we were going down side roads, we were going up driveways, people probably thought we were insane. Because we were doing everything we could looking for locations, and when all those locations that hit May, I think, and even my good locations became bad, where I couldn't walk, couldn't, you know, my hands are curling up. And all these things were like, Okay, we we've tried everything we've got to go, we were more prepared to do that, as prepared as one can be for a major paradigm shift, which you can't fathom until you just get in there and do it. So I would say if that's all you can do, you know, if if then start there, and then go, what can I do next? Because there are some people that are just so sick, that if they start trying to look 10 steps out, they're gonna be breathing into a paper bag, and they're probably going to have those steps wrong anyway, because you have to be willing to learn as you go. And when I assumed I was going to be living in New Mexico and Arizona, like, that's just what I assumed. That's what everybody assumed. And I did go and do some healing in those places. And who knows, I may end up living there, I don't know. But you've got to be willing to shift and move and change and grow as you go. And you better build a resilience like you've never had in your life. And for me, that cannot come just from me, I don't have it. It is from God alone. And you just you have to be willing to just go okay, how can I thank God in this circumstance, that is the most horrible thing I ever could have imagined what good came from this is it that I learned that this isn't going to work, I learned, oh, this thing is contaminated and now that's what's been holding me back. Because you can literally carry you guys know, you can carry this crap with you, and then be wondering why you're not healing. And it's not because you're in a bad location, it's cuz you're carrying bad stuff, you know, is it, you know, that I need to just make this one little tweak. And oh, my gosh, all of a sudden, the gains are happening, all of a sudden, my body's dumping like it's never done before, it was just this one thing. But you got to be willing to change, you got to be willing to adapt, you can't expect your life to look like it looked before. You can't, it's not going to. But that doesn't mean you can't have a full life, it's just gonna look different. And it's gonna look different than most people's life. And you better accept that and be okay with it, and then go live.
Alicia Swamy:That was incredible. Thank you so much, my dear. And we really want people to donate to you. But I know the identity thing makes it a little rough, we can do this one of two ways. If you have like an anonymous page, or we can people can donate to or people can donate to us, and we can provide that money to you.
I'm the Canary:You can do that the ladder would be good, I really just would like to stay out of keeping my face and my family into any more chaos. And they've already been put through because we are, you know, even with this, everything that's happened. I'm trying to provide as much normalcy as I can, at this point for my children and myself, and you know, and try to try to live you know, we, a lot of us get mad at the brain retraining stuff. And there's a lot that's really, really icky about that. But that said, the way you think, does have a huge impact. And if you, you guys have a really, really, really epically hard job because you have to be somewhere in between not caring, in which if you didn't care about people, you wouldn't do this, and caring too much. Because if you care too much, it will drown you because there are some people you just can't help and you're beat down and you're tired and you're exhausted and you got to maintain that balance. And for a long time, I cared too much. And I would talk to anybody that needed to talk to me and I just can't I'm not in a place and maybe someday I will be but I'm not I'm not right now and I want to I want to provide some stability for my kids and myself and my husband.
Alicia Swamy:Absolutely. We totally understand and respect that I think we're on our own journeys with trying not to care but also caring too much and trying to find a balance.
I'm the Canary:Yeah, that's that's hard.
Alicia Swamy:It is very hard and it is very taxing especially, you know, like for me I'm not 100% healed, you know, or whatever. I can't speak for Erik but you know, it's just it does take a toll but you know, at the end of the day it does give you some energy when you have someone tell you like, Wow, thank you so much for saving my life or thank you for this. It's been pivotal. And so that really affirms all the hard work that we do. And, you know, like you said, doctors don't really understand this and the majority of doctors and functional medicine people out there pushing pills and, and programs like DNRs. And it, there's a huge missing link in between all of that, you know, we're bringing to light and you are to with bringing your story to the table here. So is there anything else that you wanted to tell our audience before we close for the day or air, Kealy? Did you want to ask any more questions?
I'm the Canary:I just want, I just hope that overall, people are filled with an extreme amount of hope that if I can just, you know, no matter where you are, no matter how hopeless, it looks, I just believe there's an extreme amount of hope. And you don't have to wait for somebody else to take control of your health and fix it for you. And I know, that's the way we're used to thinking in the West, but you don't. Now, you might have to wait for some resources. And you might have to take the time to learn to think in a completely different way than you've ever thought before. But it's okay, if you don't understand all the pieces, it's okay. If you just learned oh my gosh, you know what, when I go one road over, I don't feel as bad. That's weird. It's okay. If it starts that simple. You know, just, I just hope, I just hope to encourage people, they're just, there's so much hope there's so much joy out there. And you can learn to be praising the Lord that you can sweep the floor. And that is where I have been like, I have been praising the Lord that I can sweep the floor and serve my children. And I just, I hope it encourages people.
Alicia Swamy:Thank you. And I just want to tack on to that, you know, you don't need an expensive test or an empty diagnosis, to get well you literally are depending solely on how you're feeling and your senses.
I'm the Canary:But that's what's encouraging. That's what's encouraging, because, you know, I had a doctor who was and I, I'm not trying to put him down because I think he was working the best he could with what he had available. But he's sitting here going, I don't understand your ERMI's okay. So if you have a doctor, that's like, I don't understand your ERMI's okay, but you're collapsing on the floor. And then you get out of the house and you're not collapsing on the floor. Listen to that, you know, just start to pay attention because you don't have to be a victim. You don't.
Alicia Swamy:And you don't have to lose all your money and your life savings, you know, to get some validation from someone.
I'm the Canary:No. If you can start giving up on what other people think you'll get a lot farther.
Alicia Swamy:Yeah, I love when you said that. Because I'm just, you know, so many people put, like you said they put their lives in other people's hands. And that's usually the hands of professionals that don't even understand a second of what they're going through. And they think because, you know, this antifungal has worked in the past. I'll give this to this person and see what happens. It's not that easy with this illness and, you know, care Kealy, Erik, and I knew and definitely displayed that, you know, like, it's not an easy thing to fix. Do you have any sensitivities to electronics?
Unknown:Yes, I used to, I don't know. I had gotten I have found that when I'm not in MT, just the overall sensitivity comes down for me, I just like I could stay. I, I don't. But I could be close to a cell phone tower. And it wouldn't really faze me. And I think this is where, again, there's just so much hope because you start listening to all these different functional doctors, and you're scared of everything. I mean, you really can get to where you're just absolutely petrified to go outside, like, and then you're petrified not to go outside, because your house might be bad. You're just terrified of everything. If you can learn your big bad guys, your body will calm down. You know, and so then it's not as much of an issue. I'm not advocating living next to a 5G tower. I'm just saying, you know, if you can figure out what your what your big enemies are, I don't have to stress out. If I'm driving through an area that's got a lot of 5G, like Wi Fi, I don't even think about Wi Fi anymore. I mean, when I have a house, I'm not going to have Wi Fi, you know, but I just don't, I don't even think about that stuff anymore. It just, I've learned my big bad guy, so to speak, and then and then as my tolerance for those things grow and I'm not intentionally throwing myself in bad situations or staying in bad air. But if I have to go through something, I'm not scared.
Alicia Swamy:Really appreciate you coming on ASAP and and just, you know, spending time with us and having this conversation and I know that you guys are living really day to day and you know, you don't really know what's going to happen next. And so I really do appreciate this time that you're giving us you. And, again, for those who are listening to our anonymous guest here, we're going to curate a special donation link, then you can access in our show notes if you'd like to donate to help her and her family navigate this illness, we'd greatly greatly appreciate that. Also, feel free to check out our education page where we provide a community, a support system to help you navigate this mold hypersensitivity, or just hypersensitivity illness in general. We are a great resource, we provide a lot of wonderful information. Erik is just a walking encyclopedia with the ins and outs of the mold and what you can do to avoid and also help you and your other sensitivities that you may have along with that. Thank you, everyone for joining us today. It was a wonderful conversation, but our anonymous guest again, please check out our show notes to donate to help her and her family navigate this illness. We appreciate you listening and we'll see you next time.