CIRS Patient Cheri: Motherhood, Family & Learnings from Recovery

https://ko-fi.com/theheartofcirs

The 4 Nobel Truths

The Parable of the Two Arrows

Information is educational and not meant to be medical advice. Please always consult with your medical providers on health decisions.

Transcript

Melanie Pensak: 0:10

Welcome to the Heart of CIRS podcast. I'm your hostess, Melanie Joy Pensac, here to share heartfelt conversations with folks recovering from CIRS and with those special people serving the CIRS community. The podcast was created to help bring awareness to the physical, emotional, and mental experiences of folks navigating CIRS day to day. The world needs to know what CIRS folks go through for deeper empathy and understanding. Thank Through stories and vulnerability, we can help the world understand the winding journey of CIRS Recovery. Thank you for being here to open your mind and to open your heart. I am very much looking forward to this conversation today with Sherry, who is someone that I met through the CIRS Healing Collective. She is someone who I really admire for her grounded outlook on CIRS and her honesty when speaking about her experiences. she's really navigated CIRS not only for herself, but also as a wife and as a mother. She has a lot to share around her experiences that I hope many will find beneficial. And so today we're going to hear more about Sherry's story, which also includes eventually finding a CIRS safe new home, which is really exciting. So congrats, Sherry on that and thank you for being here.

Cheri: 1:47

Yeah, thank you, Melanie. I'm super excited to be here and I appreciate the opportunity you're giving me to just talk about my experience. I think this is probably pretty cathartic for a lot of people with CIRS who can feel alone in it. So yeah, thanks for

Melanie Pensak: 2:02

having me. Absolutely. Absolutely. I think a great place to start would be just to share whatever you're comfortable with, briefly about how you think you got sick or, where you are in recovery now.

Cheri: 2:17

Yeah, this, I think this question is so interesting because initially I felt like It made sense to talk about the water damaged building that I lived in, where everything crumbled for me in my life. But as I've gone on my CIRS journey, which has been for about 4 years now, I realized that, Basically, I think there's a lot more to what got me sick. and as I'll explain to you, it seems like it's something that's a little bit more, decades in the making of what put me in the position, of, finding myself in an unfunctional state in my life. but yeah, In 2017, that's when we moved into this like really old house out in the country. my then boyfriend and we lived there for about three years and it was probably, it was within a matter of months that I became really sick. fatigue that was so intense that, I could barely even walk or do chores. it was like, I was just so couch bound or bed bound with exhaustion. And then, of course, just a myriad of other symptoms that were very difficult to live with. But the thing is that I found, upon my recovery that, of course, sensors were trying to avoid, the environmental factor that's making us sick. But I found, for myself that there was these bigger pieces at play, and those were things that had to do with, my mindset and my lifestyle, and then having an awareness of my family history. the thing that really stood out to me was that, my life before CSRS, I was a very going, going, going kind of person trying to get things done all the time, always on the move, never really taking breaks, one thing after another. And what I've learned from having CIRS is how to take breaks in my day and how to slow down and how to, I guess just take things a little bit easier, right? And so I think one thing to keep in mind is that, I think a lot of us who get diagnosed with CIRS, maybe possibly have this personality type where we're always going on this like fight or flight mode or always in this. Very fast paced way of operating in the world, rather than what they call a rest digest state, where you're more at ease and more calm. so I think that when I got diagnosed with CIRS, I developed a greater awareness of the difference of these two states. And I think that when I look back my entire life, I was basically operating out of that fight or flight mode rather than a rest digest state. Thank you. And secondly, I grew up in kind of an environment where there was a lot of anxiety around things that had to do with health. And so I would say just in general, like a sense of anxiousness that, I developed around life in general, like worrying a lot. and then, I don't know, I guess that's, that's what. yeah, as far as how I got sick, I guess the point that I'm trying to make is how the mindset and the lifestyle and your family history can play a really big piece in that, aside from just where you, found yourself to be in a water damaged building.

Melanie Pensak: 5:45

I was just going to say to that point is, and you had mentioned that your husband or was your boyfriend at the time, you also discovered that he had the mold sensitive gene and you were living in the same environment, but he did not get sick. Yeah,

Cheri: 6:03

this is what's so interesting is that down the road, we discovered that my husband is mold susceptible, whereas I'm multi susceptible. But we lived in that same exact farmhouse, the same old, completely dilapidated farmhouse and I'm talking roof leaks. When it would rain, the water would come in through the windows, through the wall area of the window, the, the crawl space flooded, this was an old, not well maintained home. It was in really bad shape. And yes, somehow he was totally fine. I won't say that his health is absolutely perfect or that, but he definitely did not experience this intense level of crashing like I did, we're like, it just totally changed my life. And yet, to this day, he doesn't seem to have trouble going into, environments where I might notice something, but it doesn't faze him. So, how interesting is that, right? That somebody who can also have a mold susceptible gene doesn't get sick. And that... To me means there is something so much bigger going on with CIRS, or at least just equally as important, right? So we have this science behind it. There's the genetic factor and everything, but there's something bigger going on behind, what makes us susceptible to the CIRS cascade.

Melanie Pensak: 7:22

Yeah, what finally triggers that point of no return, and all of the conditions that we experience, whether it's family stress, environmental stress, financial stress, physical stress on the body, different, conditions, yeah, can lead to different outcomes, right? And yeah, it makes me think about too, in my own experience, I certainly lived in many homes over the years and traveled to many places that I'm sure were water damaged. I, after college, lived in the Washington, D. C. area, in the Chicago area, in old row homes. Really old houses. That's always what I was attracted to. I've lived in basements in different places and I have a bit of a nomadic interest in my life. And so there have been multiple times I have traveled, for months at a time or a month at a time, bouncing from random Airbnb to retreat center to old yurt, and was fine for many, many years. And so it is so interesting that, when I hit that point of no return, there were a couple of stressful events before that happened in my life. I went into a meditation retreat, right before the start of the pandemic. So I was going on a sabbatical. I was one month silent meditation retreat. When I went into the retreat, there was no pandemic. The world was... Open two weeks into the meditation retreat, the world shut down and they had to stop us in the retreat two weeks in and have a very important meeting and tell us and break the news that the whole world has shut down. And so I came to this screeching halt of housing instability because I had left where I lived. All my things were in storage because I was going on a sabbatical for 6 months. And so I literally had to decide, like, where am I going to live in the middle of a pandemic? And even though I'm a meditation practitioner and we prepare for difficulty, this period of time was fundamentally disorienting. You think the world is one way, and it was almost like out of a movie. no, actually the world is shut down. And... And people are sick and dying and there's a very serious problem here. So that was really disorienting and I pivoted and. And during that time, I was able to adjust and I lived in a couple of different places, but then 1 of the places that I lived in, there were pretty intense forest fires and it also challenged my sense of safety. And I was living in a water damaged building at that time, and I got sick fairly quick because I was also living in water damaged buildings. But that stressor was a very primal stress and it makes me wonder, if I hadn't had the experience of the forest fires and the housing instability, would I still be semi functional? like, how much does a traumatic event then change the way our genes express?

Cheri: 10:36

It really makes you wonder when you think back, doesn't it? was it this? Was it that? Because it's so hard to really know. we, we can make these assumptions or gather what probably was the case that really caused the, the cascade, if you will, to really take hold and, and, change your life completely. But. It's really fascinating when you start to think about was this a factor or was this the factor? And your story is really crazy. I can't believe that you, it's like, it's like you literally went into a meditation cave and then came out of the cave and it was like a different world. It really was.

Melanie Pensak: 11:19

I remember after getting the news, I was definitely in shock. I can remember eating dinner that night and I felt I felt after I lost a loved one in my family, like after a death in my family, like shocked sort of numb. and so I didn't know it at the time, but I think this sort of fight or flight situation that, some people live in, I was more in a freeze almost, I think. and I didn't piece that together until, much, much later. it would be curious you know, as we talk to more people through the podcast and just as more people start to piece together that they have this illness, it'll be interesting to see how just challenging life events and things start to come out and how that plays a role if it does in the illness. Yeah,

Cheri: 12:05

it definitely, it definitely will be really interesting. And, because I think most of us can relate to the fact that it's not just following, the, the medical advice or the protocols that seems to really aid in our recovery. There seems to be a lot more to it.

Melanie Pensak: 12:22

Absolutely. And I know you said you've been at this almost five years, considering yourself to be about 75 percent recovered. Yeah. Now,

Cheri: 12:33

yeah, and I realized I made an error in my calculation. It's actually about 4 years. yeah, so it's about 4 years and I do consider myself about 75 percent recovered. It's funny to try to put a percentage on it because how do you gauge that? But for me, it's that I feel mostly functional in my life. It's just that I do still struggle with, those little bits of symptoms here and there. so for me, it's I still do struggle with the chronic fatigue, but I have weeks where I feel really great and I can extra exercise pretty moderately. But then I also might have a few days in a row where, I'm pretty exhausted and I can't get a lot done, but I can still function and, I still get a pretty decent quality of life. And then, I might have a little bit of symptom flare up type of things, but, what's interesting is that over the past few years that I've been on this journey, most of them have gone away. but I do still seem to have some crop up from time to time and mine have always been a little bit more like nervous system related. So I'll get like numbness and tingling. That's a little annoying. I might get a little tinnitus in the ears. actually, that can get pretty aggravating if I'm especially in exposure or something. so I get little things like that that come and go, but mostly they seem to be under control. yeah, I, I say about 75 percent recovered. I have felt that way for probably the last. Two years or so. and the thing is that I think part of that, the fact that I maybe don't have a full recovery is that I did have a baby when I was probably somewhere between 50 to 75 percent recovered and as some people may not know, you can't, you're not really supposed to be taking the medications that are prescribed to us, like the binders and the VIP spray when you're pregnant, and you're not supposed to take it when you're nursing either. It can put things on hold there. yeah, I've been just. my daughter's about a year and a half. I stopped nursing with her when she was a year. So I'm just starting to be incorporating the medications again. I'm just starting to get back into a place where I'm finding another clean environment. but there's one thing that. for me, I didn't experience this in the beginning of my diagnosis, but later, years down the road, I'm now in a place where I'm really not stuck on a 100 percent recovery. If I'd like to be 100 percent recovered, who wouldn't? Of course, I, I, that's like a total dream to me. oh, yeah, one day, maybe I could feel that amazing again. But the thing is, when you have been sick for a number of years, I think you do, to some degree, have to accept just the situation that you are in and that you find yourself. And to me, I can still enjoy my life at a 75 percent recovery. I'm always going to try to fully recover, but not in a way where I'm like, really clinging to that or really stuck on it or feel like I can't live today until I'm 100 percent recovered, if that makes sense. Yeah.

Melanie Pensak: 15:45

Yeah, I really understand that. I feel like at the first part of recovery, it was to me, I felt like 100 percent or nothing. There wasn't a lot of in between. I was pretty physically compromised that. It felt like that was, that would mean, everything was better, if, if I was 100 percent and then that caused a lot of suffering and that caused a lot of pain because as we know with CIRS, you have your good days, you have days that are more challenging. There are ups and downs in every stage of recovery. I'm on full dose VIP now, and I'm still having difficult days. And so you learn at some point, to accept, okay, how can I live the best possible life with what is going on right now? Because waiting for 100 percent is. You miss out on so much if you're just going to hold out for that, but it took me a while to get there. I definitely felt a lot of suffering, around that until I finally got to the point where I'm like, okay, this. This, there is a way to live a life that is full, that is beautiful in the midst of a body that is not functioning compared to many people, but it doesn't make it wrong.

Cheri: 17:09

No, and the, the, the thing too is, okay, first of all, everyone becomes sick or old in the course of a human life. whether that's delayed until you're 80 or 90, like, how fortunate if you, if you get to have a life without experiencing, a more serious kind of illness, or, just the typical struggles of aging life, right? Some of us are encountering it, maybe a lot sooner than we had expected, but. the thing is that suffering, it just, it is a part of life, and I will say that, I have suffered in many ways, and suffering in a way that is through chronic illness is definitely one of the biggest challenges I've ever had with suffering, but it seems that as humans do, we are able to acclimate to things, and in the beginning, having chronic symptoms all the time, and of course, it does take time to release some of those symptoms. And then I think maybe it does enable us to say, what, I can have a good day, even if I'm not feeling that well today, and that's, the thing that I really want to point out is that, In the beginning, I certainly was not able to have that kind of a mindset of accepting where I'm at or accepting that I don't feel well. Yeah, I know for many of us, it might have been, like, I know for me, it was really horrible in the beginning, how bad I felt. and when some of those clouds were lifted for me, I was able to say, you know what, if I feel a little bad here, I feel a little bad there. at least I'm still having good days. At least I'm still able to, do X, Y, and Z today. having some level of functioning is, better than nothing. And it does make it so that we can acclimate to having some of the symptoms. Yeah, it seems as the brain inflammation starts to change, as the toxins start to leave the body, that first step. Second step of the shoemaker protocol, getting out of exposure and starting on your binders and things start to regain some safety again, because our sense of safety is so threatened that there's more space to process some of this, because I definitely recognize that in the beginning to that. It's it's not so easy. You're very much just surviving. Mm hmm. It is. You're right. That's exactly what it is. Trying to trying to get through the day,

Melanie Pensak: 19:43

really. And it reminds me of, I think you're pointing to, it reminds me of one of the Buddhist teachings about really the second arrow. I don't know if you know that story, but there's a student who asked the Buddha. If a person struck by an arrow, is it painful? And, he says it is. And then the student asked the Buddha again, if the person struck by a second arrow, is that even more painful? in the Buddha replies, it is. And then he explains, we cannot always control the first arrow in life. However, the second arrow, our reaction to the first one, that one, we can control our reaction, but there's the possibility of choice and how we respond. And that's, it reminds me of just mindfulness practice in general. we start to see the pattern that we have of how we're reacting to the illness and to serves. And then we can have a choice of how we react and respond to what's happening in our body and in our life. Yeah, absolutely.

Cheri: 20:44

you know, that concept in Buddhist philosophy, it's okay, the very first, of the formal truths is that suffering exists. but then we understand when, when we're looking at, attachment and clinging that it's not that suffering exists that causes suffering. It's our attachment to suffering Yeah. That causes our suffering. that's something that I've thought about a lot with my recovery. And I remember in the beginning, it felt so no, I have to be so hell bent on being 100 percent recovered I have to be like, really dedicated to this. But weirdly, weirdly, it seems like that attachment to being fully better was just making me upset that I couldn't do certain things or making me upset that today I don't feel very well, like, why can't I feel well, right? There's just something. I think that the Buddha was on to something when he was saying that. it's our attachment to things that causes our suffering, not so much the, the, you know, the thing in itself. So it's not the fact that we have CIRS that causes our suffering per se, but our attachment to not wanting to

Melanie Pensak: 22:00

have it. Yeah, an attachment to maybe the way our body was, or maybe the way our life was. Yeah, absolutely. So I am curious a little bit to know more, and I think. people will be interested to hear about what it's like to have CIRS and recover with a husband and a young daughter. I know you touched upon your recovery, lasting a few years because, you decided to have a baby and, yeah, so I'm curious about what that experience is just being in relationship, going through that, and, and having a child.

Cheri: 22:36

I have so much that I can say on this. It's, it's hard to, be succinct with it, but my husband and I, it's a bit of an interesting story because we met when we were 19 years old and, we had this, madly in love, love story. when we were really young, and then we spent 7 years apart and we always maintain this friendship, but when I was, 30 years old. We got back together and we knew that it was going to basically be, like, forever and we ended up moving in together and it was shortly after that that I got sick. And One thing that was hard on me and the relationship was that when we, it was so new, right when we had gone back together and we were trying to re explore this new relationship between us, we have this really heavy, heavy burden on our relationship, which was what was causing me all these problems, which, of course, everyone knows when you don't feel good, it's hard to be kind. It's hard to be patient, right? So it's stressful and straining on the relationship. first of all, there was, There was that that we had to deal with. and then there was, once we got the diagnosis, trying to navigate that, my husband's a lot more on the. I'm the type, I can get rid of things. I love to clean things out and make, clean, clears my mind up. He's the opposite. He likes to hang on to things. He likes to collect things. as you can imagine, people who are that way have a very hard time with the contents cleaning protocol of moves. Oh, I felt so bad, because. Not only would we maybe argue about things we should or shouldn't keep, but then there was the guilt that I felt that he had to let go of certain things. oh, if he wasn't in a relationship with me, he wouldn't be going through all of this kind of suffering. Yeah, so there's that aspect of, of, having to navigate that in our relationship as well. I will say 1 of the super cool things that I lucked out on is that my husband actually studied mycology, which is the study of, fungi and mushrooms. So he studied that in school. He had a degree in botany. But then he also worked in a microbiology lab working with like bacterias and stuff like that. So he has a very profound, understanding of, what we deal with, with CIRS at that microscopic level, like trying to understand the microscopic contamination and contents cleaning. He actually gets it and he understands that it's not just crazy, right? That that makes sense. In fact, he used to grow Mushrooms and stuff like that. So he would be trying to grow these really cool gourmet mushrooms, lion's mane and turkey tail and all kinds of things. And he had these, Like contraptions that would, blow the air in a, out in a certain direction when he was trying to inoculate things so that it wouldn't contaminate. all that is to say, he just has a really good understanding of that. So I got really lucky there. but then the other thing too is, like, where he works right now, it's a very water damaged building. And he, when he comes home from work, he has to basically, strip down in the garage and come in the house and, go straight in the shower. there's these elements. That, of being in relationship with CIRS, that can be really strange. I used to think that was really funny when people would talk about that in our, in our support group, about, doing things like that, stripping down and showering. I was like, whoa, that sounds like way too much. But once we got in this brand new house, my husband doing that, it doesn't seem that crazy anymore because it's okay, a, we know that the building he's in is contaminated. And B, we really want to preserve how clean our space is. there's, there's, things like that, that make the relationship funny, like your husband walking in the door in his underwear when he gets home from work. yeah, it's and we can't eat dinner together because he's got to go shower before he sits down to have a meal. And, we're like, me and my daughter are hungry. it, it can have some, funny impact on the marriage, but. He's pretty great about it. I, I feel like we're lucky because we've got a solid, a solid marriage. And while things have been very trying on us, and it's been hard, he's He's just been a real rock and really solid. And, he doesn't make me feel like this is my fault or something, Yeah.

Melanie Pensak: 27:02

he sounds every CIRS patient's dream partner. Yeah.

Cheri: 27:07

Isn't that wild though? Somebody who really understands things on that microscopic

Melanie Pensak: 27:11

level. I'm single and just starting to think about. Like what it will be like to date, and there's so many things you have to consider in the world dating right now anyway, and I think, wow, that's going to be really interesting to have conversations with people straight up front about what's going on. what my needs are around housing and, and things like you're describing, right? And, and the quality of how clean the bedroom is, right? Cause I'm an actinose reactor. So I react to actinomycetes, which is a bacteria fungi, that lives along with mold. And, we have to clean our beds certain ways and things. So our immune system doesn't react. And so I think, wow, that would be a mouthful to put into a Tinder profile. I know.

Cheri: 28:03

It's you're either going to have to have someone with a really big heart, someone with a really open mind, or just go find yourself a scientist.

Melanie Pensak: 28:13

And so what's it like having your daughter? I know you mentioned you can't be on medications and things during pregnancy and, During nursing, but it sounds like hormonally. What happens in the body helps you to feel pretty good during that time.

Cheri: 28:28

Yes, that is, that is the truest thing. yeah, one thing I want to say, because I've had a lot of, I've had a couple women reach out to me in our support group of questions about this, so I feel like it's one thing I should expand on is, a lot of women were like, how did you know that it was okay to get pregnant when you were in the middle of recovery and not fully recovered? And my answer to that is clearly it's going to be a pretty individual decision, right? if you're 21 years old and you want to wait till you're 100 percent recovered, then so be it, right? But I was in my, early ish 30s, getting into my mid 30s. I was super ready to have a baby pretty much right when my husband and I had gotten together again. And it was very hard on me getting sick and being unable to try to conceive. It was like, clearly I'm not in any condition to endure a pregnancy or go through labor or take care of a child. And so I had to wait right until I was feeling better. And, when I was feeling better, we kept contemplating it, should we try to have a baby now? Do we wait until I'm 100%? but what it came down to for me is I was, let's see, I was about 34 years old and I was so ready to have a baby. I felt like I had recovered enough. And to me, it felt the alternative to trying would be waiting to recover, and then maybe we have problems getting pregnant if we wait too long. And to me, it just felt it's worth trying. I feel good. I'm ready to have a baby, so let's just do it. And I took it that if my body gets pregnant, then I felt like, okay, then my body's ready to do this. Yeah. We went ahead and we tried and we got pregnant right away, which surprised me. I was, I didn't have a minute to really comprehend it, but yeah, you, you basically do have to stop taking like most of your supplements and most of your medications and everything that you would be taking. and if you're nursing your child for a year, that's a good year and a half that you're not taking your medications. But as you alluded to already, Melanie, you, I believe it's the hormone progesterone that's the anti inflammatory. I'm not totally certain about that. I'm really not a science minded person. So forgive me if I'm wrong about that, but. I believe that's the hormone that gets released pretty heavily when you're pregnant. and because it has these anti inflammatory properties, you do notice a curbing of a lot of your CIRS symptoms. Now, I did still experience pretty extreme fatigue from the pregnancy, as that's a CIRS. But for me, it was pretty heavy, and I think it was probably a bit of an exacerbation of, me already having some CIRS. Issues in relationship to, fatigue, but overall, yeah, when I was pregnant, I felt like the nervous system stuff that I was dealing with, tinnitus and numbness and tingling and those kinds of things. They just didn't really seem to be present and funny enough, postpartum, when I had had the baby and was breastfeeding for a year, that was probably the best I felt since I was diagnosed with CIRS. yeah, like I was to the point that I was like doing more cardio type of activities, which is something that I can't really do too heavily ever since I got diagnosed with CIRS. But, yeah, I was able to do quite a bit. I remember going on, these really intense hikes and it didn't even phase me and I was like, oh, my God, I'm cured. And then when I stopped nursing, the hormones dropped and I went back to my 75%. Recovery baseline, but it's, it is fascinating. So there are perks to, enduring the pregnancy and, if you, if you do choose to breastfeed, experiencing some of those benefits from the hormones. and the other thing that I have to say too, and I think this one's really important, is that having my daughter really enabled me to let go of the obsessing over my CIRS symptoms and the paranoia to a really intense degree of being exposed in certain environments. I felt like that used to always be on the forefront of my mind and it made me very nervous and anxious all the time. But then once I had her, I think there was just this element of I had more important things to do, which was to take care of her and to make sure that she was, her needs were being met. But then on top of that, as most know, children are just such a little joy. she's just such a joy to have around. for me, the experience of having a kid, it enabled me to just chill out about having CIRS. I felt like it just made me more practical. in dealing with it because it's less about me and now it's more about her and I'm, my attention is just able to focus elsewhere, which was really helpful.

Melanie Pensak: 33:45

That's beautiful. She brought you into the present. He really did.

Cheri: 33:49

She really, really did. Yeah, I, I, I feel super blessed that I, that I had her and it, it all felt really like divine timing, like when we had her and how we were able to conceive her and what she brought into my life. It all felt very, meant to

Melanie Pensak: 34:07

be. I really appreciate you sharing about all of that. I think that'll be impactful for people to hear and to give them some things to consider about if maybe they want to have a child or not. I know whenever you were speaking about it in the support group, it really was something that opened up my mind to possibilities because. I am 40 and I've really had symptoms, even though I wasn't in full fledged CIRS, I had digestive issues and things that were ongoing that I think were really indicators, probably from about 32, 33, until I got CIRS, diagnosis of CIRS at what, 39. So in my mind, those were always the years I thought. Oh, yeah, that's when I'll get serious about dating and maybe have a child and different things. I always prepared for maybe being a mom in my later thirties and I feel like serves took that away that opportunity and because you start to withdraw when you don't feel well, you start to withdraw from friends and dating and all those things just get. pushed to the side. And I remember you talking about, how your body was able to handle it and, and bringing a child into the world. And I thought, wow, like maybe I don't need to close the door on that. Like where I am now, I'm going to be 41 in August. I don't really know if I will have a child or not. I'm a little more ambivalent than I was earlier on in my 30s about really wanting to have one. but I'm just living my life. With the possibility now that maybe I will, like I want to be healthy enough or if the opportunity was right and the time came that I would not close the door on it because for a while when I got the CIRS diagnosis, I felt like that's it. you can't have kids. And I felt like I grieved that because it was like forced upon me. It wasn't my choice. It was like this forced, idea. But now I really see that that was something that was not necessarily true. It was just something I perceived to be true. And yeah, it really, I just want to say I appreciate that because it opened up the possibility for me that if maybe that's something I want to do, that that option might be there.

Cheri: 36:31

Yeah, I, it's, I think it's a total, it's, it's weirdly this misconception that when we get diagnosed, it's we think, okay, my life starts when I'm 100 percent recovered, that's when it's going to start again, but I think when you are going through recovery and years are going by, you start to say, Okay. maybe I'll still experience a hundred percent recovery, but I can't just keep letting life pass me by. if I'm functioning, if I can appreciate things out of my day still, if I can love people still, there's still a life to be lived,

Melanie Pensak: 37:09

Absolutely. How do you plan to work with your daughter with CIRS? I know that you tested her for, the genes.

Cheri: 37:20

Yeah, and I don't remember the exact name of that test. I just know it was the one, it's the one where you can take this little cotton swab, you just swab in the, in her, I just swabbed it in her cheek and then mailed it in and they were able to tell me that she had the mold susceptible gene and funny story about that was that's how we discovered that my husband was mold susceptible. we, we just assumed he didn't have these genes, And, I was like, wait a second, how is my daughter mold susceptible if I'm multi susceptible? Shouldn't she be multi susceptible? And then Jenny Johnson in the support group was like, what? basically that means your husband has that gene. And I was like, what? my mind was totally blown because he never got sick, right? Yeah. So it was just really mind blowing to me, but... all that's to say, yes, I did find out that she is mold susceptible, which is a little disappointing because I was hoping she wouldn't have it, obviously. but the thing is, I'm armed with that information now. I, I know this about her and I can help make sure that she's not starting a CIRS cascade, by just having that information. And so for me, it's about okay, clearly we're going to be living in, mold free housing as much as I can, possibly muster that as much as we can maintain that. and then, I think it's just going to inform decisions for me, what schools she'll be going to. That one is very tricky. clearly, I'm probably just going to have to not have her going to schools that are like really old buildings. Maybe I can try to put her in, really newly built schools or something, but, that doesn't mean even those buildings can't have stuff happen. But, just, we do the best we can. I, imagine I'd have to vet houses that she would ever be staying the night at a thing. It's something that I would just. She would have to kind of like learn a little bit as she's growing up about some of these ways of keeping the environment clean or just having a bit of an awareness of, what a water damaged building is, or when she smells that must be smell kind of thing. That's probably best to not really spend a lot of time there. Yeah. But for me, I haven't yet taken her like to a CIRS practitioner or anything. and I'm trying to decide, like, when is the right time to do that? she seems to be in really good health. I don't really want to be pricking her and traumatizing her when she's so little at this point. and I, I feel like, we're in clean housing. She seems to be healthy. So I'm just going to wait, I think, until she's older, if it seems reasonable to continue to wait until she's older before we start doing anything further to evaluate her. but yeah, I think the big thing for me is now that I'm realizing how much it's not just about the genes and it is so much about mindset, lifestyle, what I'm feeding her, those are going to be the things that I'm really focused on. I, I'm doing my best to make sure that she's eating really whole, nutritious foods. that, we're providing her with a sense of really solid, love, security, safety, I'm really trying to help develop her relationship with nature. So she can experience that sense of being grounded. I'm just trying to give her like a different, upbringing where she's feeling grounded and rooted and home and is nourishing herself. and I'm hoping that will be a way to really arm her with, good

Melanie Pensak: 40:59

health. That's so beautiful and... So needed. I hope that as the awareness of this illness continues to spread, that there are more parents and educators that become aware of these situations too. So it's, she'll have many allies growing up, Yeah. Yeah. Because I, I think about. The schools and places that I went and grew up in for Girl Scouts, the basement of a church and, and different, dance studios and, and school environments and all of those things. If there's awareness ahead of time for a child, just to even be able to notice. Yeah. If you smell that musty smell leave, like that's so empowering.

Cheri: 41:44

Yeah. and it's not like we need to create this dreaded monster. that's. For sure the last thing her nervous system is going to need, right? But it's just arming her with those tools and those skills. how many of us had no idea like what a water damaged building was? I was in my 30s when I moved into that dilapidated house where I got sick and thinking back, I'm like, I can't believe that it didn't dawn on me that like water rushing through the roof and the windows was like a threat to my health. How did I not know that? so if we can be teaching our kids this and this can create a little bit more of an awareness of that, it just seems like such a mountain to even say that I would hope that society can start to evolve a little bit to have more awareness of, what a sick building is, even if you don't have CIRS, some of these buildings are hazardous to people's health, Yeah,

Melanie Pensak: 42:40

I really hope that. This podcast and there's lots of other CIRS Angels out there spreading awareness in all their different ways, but I hope it does. Help to bring some awareness to people outside of the CIRS community about what it's like to live with CIRS and what to tell people, for example, maybe someone listening to this podcast is going to say to me, Oh, you know what? My basement flooded last winter. You better not come over. like if somebody would just have that amount of awareness, like that can make a really big difference for somebody. I grew up in Pittsburgh, Pennsylvania, and, Having water in your basement is like a seasonal activity. I can't even tell you how many basements I've played in and spent time in and had sleepovers in where there's like dehumidifiers running with a wet carpet. flooding is just so common that people even think of it as being an issue. And If people just even have that awareness, just like kids who are allergic to nuts, where they might, say, don't come over here. We had peanuts in the kitchen or something if, if they know that a child is could potentially get sick from water if they know and can say, okay, don't come over. We know we had a flood in our basement. that could make a really big difference for our youth and for people in general.

Cheri: 43:56

Yeah, most certainly. And

Melanie Pensak: 43:59

that kind of brings me to the next question. What do you wish people in the world knew about CIRS?

Cheri: 44:06

Yeah, I think so. This is the hardest thing, I think, for anybody who doesn't have an understanding of CIRS. Probably to comprehend is the social CIRS. it's difficult navigating this with, friends and family. And I would even say that a lot of my friends and family, they, they really just don't understand CIRS to the extent that really they would need to understand it to be able to help me not encounter, spaces in their own homes where, water damage occurs. It's just, it's a hard thing for so many people to wrap their head around. And so then I often find myself having to kind of like, dodge little things or avoid little things or maybe I only spend time over there in the summertime when I can be like out in your backyard most of the time. but yeah, basically, I just wish that there was a greater understanding of the social impact that it has, that it can make relationships really difficult. And that's mostly because of the lack of understanding and awareness for people who don't have it. And I'm not blaming them. It's it's hard to wrap your head around as a person with CIRS. It takes like years to start to really. Yeah, understand all of the avenues of it scientifically and medically and, building science aspects of it and everything. yeah, I, I just wish that they could understand that, if I'm seeming like I'm maybe being socially avoidant, it's not like a personal thing, that it's something that I'm probably doing out of trying to safeguard my health. I know with my family, I particularly might not spend a lot of time with them during the winter months. Because, they live in older homes or my mother actually did have a mold issue that they had to have remediated. And I tend to avoid spending time in people's houses in the winter months, and I get pretty isolated in the winter and we stay more home a lot and things like that. yeah, I don't know if if there was just a little more of an understanding that those things are not like personal. that it's.

Melanie Pensak: 46:27

Yeah, it's hard because I think it puts us in the position, the person who's sick and dealing with so much with the illness to have to set boundaries or to voice what we need, which isn't necessarily a bad thing, but it's exhausting when you're already dealing with the illness on so many different levels. So it's exhausting for me to think. that I have to even explain to all my family members, I'm probably not going to be able to come in your house. We have to meet outside. I'm going to have to bring my own food. all these things that it's, it's a lot to put on the person who's sick and unfortunately it gets put on us because we're the ones who understand it more than others.

Cheri: 47:07

Yes, and it's certainly a tricky thing to navigate to because I've, I've had to find, what is my balance with things because I want to spend time with my family. I want to spend time with my friends. And like my, my mother who had her home remediated from mold. She'd been trying to get, get me to come over for quite some time. And of course, naturally I was a bit nervous because it's not like she had the, the microscopic level of cleaning done in her home. And as we know with CIRS, we're not just reacting to the, the active live mold spores, but we're reacting to any of the dead fragments that get left behind. and so even though I've tried to explain that to my mom that like, you need to have this special kind of HEPA filter and you gotta use this like HEPA vacuum in your house. it's just, I think it's just hard for people to understand. They're like, maybe they think we're like a little too anxious or something, but they just don't understand it. And I found myself with, with my mom, I just, I really want to come over, spend time with you, but I'm nervous. And so she just recently, we had family in town visiting. And I went over there because she was doing like a backyard barbecue. So I was like, okay, great. I can hang outside most of the time and. I did go in her house a little bit, which I know some people are like, what, how could you do that? But I guess I tend to be a little more lax with things. And it was interesting. I noticed that I, was definitely reacting and I didn't feel too well for a couple of days afterwards. But for me. It's a little bit worth it because I wanted to spend that time with my family. I wanted to be there with them. I, my sister was visiting and I wanted to, to hang out and it's hard to make those choices between being left out or not getting to spend time with loved ones because it could sacrifice your health or like in this case, I said, I'm gonna sacrifice my health a little bit because I really want to be part of this. And, it was a bit like, when someone goes out and they're like, should I drink alcohol tonight or not? And if you do, you're going to have fun, but you're also going to have that hangover afterwards. And for me, it was a bit like that, I knew, okay, I'm going to go have fun, but I did have a bit of a quote unquote hangover afterwards of, being in my mom's house. So it's hard to balance that, like, where do you, when do you have to. Sacrifice a little bit or be a little flexible in regards to your health so that you can participate fully in a social

Melanie Pensak: 49:37

way. Yeah, I really appreciate all of that. And I don't know if you've had the experience. Where you can maybe into it that people. When you're talking about mold that they might take it personally to make it mean that their house is dirty. Yeah, and I think Just because you have water damage in your house, it doesn't mean you're dirty, but the level of cleaning that we need to do to maintain and make sure the internal microbiome of a home is healthy for us to live in is different than the person that doesn't have CIRS. And even if they don't have mold and. Or if they've had mold of remediated, like you're saying, was it cleaned up properly for us to not react to the house? And I think it's hard because people even like. landlords and things. I think if you talk about mold that you're saying the apartment's dirty and it's a completely different thing.

Cheri: 50:33

Yes, I'm really glad you brought that up. That's, that is such a common thing that I encounter with things and, and it can make conversations really awkward too, like with, friends or family members, if you are discussing whether they've had some kind of water damage or something, you can tell, that they feel like you're, You're, you're saying something about their, their house being dirty or something and it's really, that's, it's, it's such a different thing, right? I'm not, we're not saying you got head lice or something at your house, this is a very different thing. It's something that gets in the air and if we're breathing it in, it seriously impacts the environment. our health.

Melanie Pensak: 51:16

just a couple more questions. This has been a really juicy conversation. yeah, if you had one magic wish. that you could grant for the CIRS community, what would you wish for?

Cheri: 51:27

I think the thing that is so clearly and obviously needed, and I do wonder if you've gotten the same response from other people you've talked to, but how badly do we need some kind of a safe Like housing community for people when they're getting diagnosed and needing recovery. I think the whole like journey of, when people are trying to get out of their original like moldy, contaminated environment and they're trying to get into somewhere new, how many of us have had to do that multiple times because there was contamination there that we didn't quite realize, or it became contaminated again. But it would just make things so much easier for people in recovery if we somehow have some kind of housing space for people to go when they're trying to get their bearings and they're trying to get their feet under them, they're trying to grasp and make sense of all of this diagnosis. Where they can just go and be able to recover that way. And I don't even know what that could look like. it's do people pay for that? Is it some kind of a charitable type thing? I don't even know, but that clearly seems to be a major. Pick up that extends people's recovery. I guess they say that 1st step getting out of exposure is the most difficult step and my goodness, is it ever? It took me many years. yeah, to accomplish that.

Melanie Pensak: 52:51

Yeah. And like you're pointing to, even if you get into a clean space, it can become contaminated and there might be a leak or there might be bacterial growth from different conditions from the weather changing. And it's, it's so much to put on somebody when they feel the worst they've ever felt in their life to then have to uproot and move. Like one of the most stressful things. What you can do in life is amazing. And then you're trying to do it when you're devastated physically. It's, it's a lot. So yeah, I think that that is a beautiful wish and requires a lot of thought. I, I hope that there's somebody out there that could, could make that happen.

Cheri: 53:36

Yeah, certainly just putting it out there in the world. I don't know what, kinds of things people are capable of, of making that happen, but maybe it can put an idea out there for somebody listening, to help that come to fruition, because it's probably one of the most needed things for people in the CIRS community. Yeah,

Melanie Pensak: 53:56

really badly. last question is what keeps you hopeful on the day today? You've been going through this for a while and, have a really great outlook and attitude about recovery. How do you stay hopeful? Yeah, that's a

Cheri: 54:12

really great question. I think for me personally, it's always been that I, I'm, Since I can remember, I've always been a much more spiritually oriented type of person. I don't consider myself religious, but I think that there's more to life and more to existence than just the physical and what appears to be here, but I've always felt kind of a. Connection to, something bigger than myself. I don't know. Some people call that something like God. but I just, I've always felt like I'm here for more of a self. Spiritual evolution of myself. And so for me, getting CIRS as hard as it was in the beginning, as I've gone through it down the years, it has helped me to be a more compassionate or empathetic person. It has helped me to look at myself more honestly, in regards to my lifestyle. it's. It's, it's helped me to, to really, truly embrace being grateful for the little things. if there's anything CIRS has, helped me build as a skill, it's being able to really say, even on a bad day, I can be outside and I see a butterfly and I'm like, okay, attached to that. How beautiful is this butterfly? How wonderful is this butterfly? yeah, I think for me being hopeful is, is, yeah. It just has a lot to do with, that little, having gratitude every single day, even for the teeniest, tiniest little things, which, by the way, a cute little one running around really helps with that because they're funny as, as, as ever and just adorable and they're always doing really cute things. but yeah, yeah, I, I don't know. I, I think that pretty much answers your question. yeah, gratitude and just that I, I find myself to be a bit more of a spiritually oriented person and I think that helps a lot. Beautiful.

Melanie Pensak: 56:11

Sherry, thank you so much for sharing so openly and honestly and gifting us with your wisdom and suggestions and insights as you've navigated this recovery. Thanks for sharing your heart with the community and, yeah, wishing you and your family lots of continued health and wellness in your new home. Yeah, thank

Cheri: 56:31

you, Melanie. I really appreciate you putting something like this together. I think so many people are going to really enjoy listening to it. and it's just been a real blast just chatting with you about this. Like I said, very, very cathartic. So thank you for the opportunity. Thank you so much.

Melanie Pensak: 56:53

Thank you for listening and for your kind attention. To keep in touch, follow the Heart of CIRS podcast on Instagram. You can visit melaniepensak. com forward slash the heart of CIRS to donate. Your generosity helps to keep this podcast growing. May the awareness of CIRS spread far and wide, helping to change millions of lives for the better.

57:23

Bing.