The Heart of CIRS

CIRS Patient A: Finding Mold, Trailer Life & Partner Support

September 29, 2023 Season 1 Episode 4
CIRS Patient A: Finding Mold, Trailer Life & Partner Support
The Heart of CIRS
Show Notes Transcript
Melanie Pensak:

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 happy to be in conversation today with a friend of mine who is going through CIRS Recovery. He is somebody that I have met through the CIRS Healing Collective, which started, and is run by Jenny Johnson. You can find Out more information about how to join that Healing Collective group if you want to on surviving mold.com. But this person and I have become friends. It's been really, great to connect with him and to support one another as we go through the CIRS recovery. And so I'm really excited to be in conversation with you today. And I just wanted to say too that I always appreciate how you hold a sense of humor during your recovery process, and you're an awesome cheerleader, very supportive of everyone, and really genuine in your support. So just wanna start off saying, I appreciate your positivity in the midst of all of the SARS

Unknown:

challenges. Yeah, thank you so much. Thanks for having me.

Melanie Pensak:

So we won't go into every detail regarding the CIRS journey and recovery process for you, but I think it would be interesting for folks to hear a little bit about how you think you got sick, and Also, how you and your wife started to notice because I understand that, your wife is also, recovering from CIRS.

Unknown:

Yeah, definitely. I'll try to keep it somewhat brief, but I'm 32 years old and It's hard to know for sure, but just growing up in school, I would have the hardest time remembering anything. I just. I cheated my way through school and high school, and I just felt like I always had such a hard time remembering anything, but I was always really physically active. And then when I got into college, it was just way more intense and I was having a hard time because I just knew I had such a hard time in school previously. It's hard to know for sure, but if I had to guess, this is how, what started it, I started taking Adderall from a friend at school, he had some, and of course it worked really well in the beginning, and then I would plateau and I wouldn't feel that, I guess it's kind of like a high from it, and I just started taking more and more, and I felt awful from it, and I just got tunnel vision, and I should have just stopped taking it, but then I went to a, a doctor and I got a prescription for it. I told her I felt awful because of it. So then she gave me an antidepressant and it was just like meds started stacking up and I was still in school and I was losing weight. I would normally weigh like 180. I got down to 140. And I, if I had to guess, I just stressed my nervous system out so much. And then we moved into an apartment and I finally got off all the medication took like over a year just to slowly wean off of it and I felt so bad. And then for years after I just felt so bad and I could not figure it out. The mood swings, the fatigue, just the. The suicidal thoughts were just so extreme and I would just get like these crazy just feelings of rage throughout the day and Just trying to figure it out going to doctors I'll get crazy headaches and then I was watching a YouTube video and it was just a doctor Oh, I think I was having the mood swings were just so intense and I was just typing in like Mood swings on YouTube, and then there was a doctor talking about, mold exposure, mood swings, and that's when it clicked, and that's when I started looking into doctors that worked with, CIRS.

Melanie Pensak:

Wow. I'm so sorry that you went through years of suffering around that before getting to the point of CIRS, but I'm glad that you finally got to that place. And yeah, it's, it's really interesting. I think that there were, it sounds like you're pointing to signs as a young one that maybe you were having reactions to water damage buildings when you were younger or in college. Do you think that there were environments that you were in that were unhealthy?

Unknown:

Oh, yeah, 100%. I remember I talked to my mom when, kind of when this all started, but she's Oh, yeah, the house, we grew up in, there was a couple big floods there. And then the house that we moved to after, there was a ton of water damage. I honestly think I've been in water damaged buildings my whole life. So I think just all built up and then it finally broke. Wow.

Melanie Pensak:

Yeah. So you eventually met your wife, got married, moved into a house, and I think it would be really interesting to, yeah, hear a little bit about that experience. Do you have a suspicion that your wife developed CIRS in your house, or do you feel like she maybe had it prior as well? Because I know she's experiencing the CIRS challenges too.

Unknown:

I feel bad saying this, but it's not as extreme as mine, but it still has to suck so bad. Her main thing is fatigue. She's been tired like her whole life, and the house she grew up in has had water damage, for sure. I think, and she says, if it wasn't for me, she would have never looked into it more for herself. So that's, that's nice that she's working with the same doctor I am and, but yes, her main thing is she could just, sleep all day. She doesn't have that, that, get up and go. So it will be really nice in the future to see her with some energy one day.

Melanie Pensak:

Wow, so there's two people that grew up in water damaged environments, had exposures maybe across their life, come together, and then you're in this house that you're living in that you finally realized had water damage as well. I think it's going to be really interesting for people to hear about how you finally realized that your home was experiencing water damage, because I know you were on the hunt for what the possible source could be for quite some time and just set it up a little bit for people. You were living in a state that's traditionally very dry, then there were unexpected rains in that environment for longer than would be typical. And can you share a little bit about the plug and the water and how you found out what was happening in your house?

Unknown:

Yeah, of course. so we bought a brand new home and it was in a, a development and kind of like quick builds, put out really quick and I had CIRS at the time still. It was, it was really bad still. And we moved in. And I was working with our, the doctor was still working with currently and we did an ERMI and it's all just been, of course, for everyone, just such a big learning experience we did. It was a two story house, so we did just one ERMI, throughout the whole house and it came back super good. It was a negative, actually, it was like negative two or something we sent that ERMI to our doctor. And she was like, she's yeah, it's really good, but Stachybotrys, which is, a lot of people know about that, it's, that one has to be wet, all the time, a constant leak for Stachybotrys to grow, it needs moisture all the time, and that was, I think it was like a, it scored a two, so it was low, but at the same time, it shouldn't be there, and then I was like, no, You just write it off because you want to, you just want to keep moving forward. And I was like, Oh, like our scores are negative. So she's I don't know. She said, I don't feel comfortable about it. So she recommended we reach out to Bill Weber and he was just a really good fit for us. And we worked with him virtually. We couldn't afford to have him drive to us and it was just way too expensive. So he. He suggested we do an ERMI outside, so we did, we took samples from the windows because you don't want to have any rust on your samples, so the windows were just a good easy swipe, so we swiped all sides of our house, the windows, and then we did, I forgot, he recommends I think it was, everyone's different, but he recommended I think an ERMI every, maybe 500 feet or something like that, so we did an ERMI downstairs, two ERMIs upstairs, And we're in the attic and of course it finally came back with a much bigger problem. I think our stacky on the first floor was where we did the one ERMI came back at a score of 30. And when we just did that one ERMI in the house, it came back as a 2. Because it was, not just in that one location. So anyways, we... We're now trying to figure out where it was coming from, could we fix it, our house was only a few years old at the time, and he recommended some other tests we could do, so we did those, all came back normal, and it just got to the point where he said, there's obviously a problem there, and it's so cool because the different types of molds, that's why I think it's really important, To, we did the test ourself before work on the bill and we got a negative score and we're like, we're good, but I think it's really important to have a professional and everyone thinks differently, but just from what I've learned to have a professional look at your Ernie, because different types of molds means different things. And our score is a negative two, but there was still a red flag. And for him to be able to piece it together, okay, this mold likes to be in a warm environment. So it's probably on this side of your house facing the sun or. It was just crazy and yeah, and then it got to the point where he said, I don't know where else to look. The next point is for me to come out there, but it was going to be a ton of money, so we were just thinking and we had a crazy wet winter and one day I was going to blow dry my dog and I was getting ready to put the blow dry into the outlet. And I noticed like something shiny under the outlet and it was, it wasn't like gushing water, but there were, like drips of water coming out of our outlets on our second floor. And I, it was just like, it felt so good. I'm like, Yes! Water! I'm like, What? I'm like, Water! Outlets! And we finally figured it out. long story short, there was just, there was a, a building defect. they put them up so quickly and, we, we had it remediated and were able to sell it. And that's our story with the whole house.

Melanie Pensak:

Wow. So what were you and Jess thinking when there was water in there? Were you excited? Were you annoyed? Were you happy you finally figured it out? what was that like?

Unknown:

I would say more happy just because, gosh. We spend so much money, everyone spends so much money with Surs, with Bill, he's almost 400 an hour, and our brand new house, and it's just crazy, for sure more happy, but then you start to think about it and it's frustrating and it's scary, it's like how are we gonna get out from underneath this thing, but definitely more thankful we just finally figured it out.

Melanie Pensak:

Yeah, it had to be so validating I bet to figure out Surs finally after all that time, and it's. Also really frustrating. And to think if there hadn't been that rain and that wet season, that would break my heart to think that you would still be there trying to figure it

Unknown:

out. Yeah, exactly. Yeah, we would be or we'd have to pay like, I think it was going to be like. 8, 000 to have him, drive out to us. It would have taken a long time for us to, to get to where we're at and then put him up in a hotel and he's expensive. It's worth it a hundred percent, but yeah, so thankful for that rain for

Melanie Pensak:

sure. And it sounds like you're transitioning into a different type of living environment at this point, and you made a decision to buy a trailer.

Unknown:

Yeah, we did. So we, once that house was, we actually knew how bad it was. And I started feeling much worse. Like my mood swings were getting way worse. And then Jess, she, she was actually like, Oh, my chest is starting to feel tight and like kind of anxiety. So she talked to her, her mom and her mom was like, come live with us. no question. She's just so nice. And yeah. Her mom and dad. So we started living with her parents and so thankful, but we were like crammed in one room and it was just hard to live out of room in a suitcase. We got over it pretty quickly. And then their house, that's the one Jess grew up in has wire damage as well. So I was. And right when I walk in there, I just have a hard time speaking and thinking. So I was, I've been sleeping in the car. We have a Honda Civic and gosh, everyone's like, how can you do that? It sounds horrible, but oh my gosh, I sleep a thousand times better in like the trunk slash backseat of a Honda Civic than I do in the moldy house. Yeah. So it is worth it, but we wanted to get out of that room and I've been mentioning for a while, gosh, it'd be nice just to get a little trailer and we finally started looking into it and we just purchased, it's, it's an ATC is the manufacturer and they're built out of aluminum and a lot of people that have CIRS, there's actually a, a Facebook group that's been helpful, but a lot of people have done pretty well in them. So we bought one of those. It's all aluminum, and then the insulation doesn't have paper backing, and then there's no wood or cardboard, so we looked into it, thought about it for a while, and we finally pulled the trigger, and we've had it for about, man, maybe not even a month so far. Wow.

Melanie Pensak:

So do you have to consider things like, am I allowed to put a trailer in my backyard? Do you have to check in with like local people or is it something you can just

Unknown:

do? Yeah. Good question. So where her parents live, it's like a little farm town. I don't think there is really. a restriction against having a trailer in your yard. We snuck her, our trailer in their backyard, so people can't really see it, but they're definitely not as strict as like living in a, like a, a nicer development or something like that. Yeah.

Melanie Pensak:

And how do you manage setting up water and toilet needs and how does that all work with sewage and

Unknown:

whatnot? Yeah. Good question again. So as everyone knows with SURS, it's It's just so hard to get things done, and we've been just slowly learning, let's see, for, I believe it's the black tank, which is that is the one that would go into their septic tank, so like, all the waste, you could, we could, her parents have a septic tank, so we could hook it up to that, we haven't yet, we've just been learning. using their restroom inside. And if they didn't have a septic tank, I'm not sure. I think you'd maybe have to drive it somewhere and have it dumped or dump it, I believe. But it's just still, we have so much to learn. And then the electrical, we, we aren't even all the way, a hundred percent set up yet. We have, we're living in it, but we have just some extension cords going from her parents house to like. run my wife's work computer inside the trailer. And our next step is getting a couple adapters. So I believe it's it's a 50, it's a 50 amp plug. I know this probably won't make sense to a 50 amp plug and a regular house plug is way too small. So you can run adapters that go off to that. Connect to the 50 and then they break it down to, I think it's, they break it down to a plug that, that you can plug into the house. So we would then have power to all of our outlets on the trailer, but it wouldn't be enough power to run the AC. And to do that, we would have to have an electrician come out and install a 50 amp plug. So we could, we could hook the 50 amp. extension, or the chord from the trailer.

Melanie Pensak:

That's so interesting. Because I have no knowledge on any of that at all. Yeah. How do you even begin? so it sounds like if you have a septic tank option already, there's a way to hook it up. there's ways to set up the electricity and then to do it more professionally. And what about water? How do you connect to water?

Unknown:

Oh yeah. Water is super easy. You just, you would just run, you get like a special hose, like a drinking hose from a Amazon or an RV source. So it doesn't have all those, I think chemicals or something, but. You just run water from the house and then you put a little filter on it and then just hook it up to the trailer. So that one's actually a lot easier than the, hooking up to a septic or the electrical. Great.

Melanie Pensak:

So have you and your wife noticed any changes yet with sleeping or is it too early to tell?

Unknown:

I've noticed with her, her energy has seemed better. Gosh, still such a long ways for us to go, but her energy seemed better, and then, her mood has seemed definitely better, and, Ah, nothing's perfect, it's, it off gasses, they say, they say there's minimal to none, but I think someone that's as sensitive as I am, I, I do notice a little off gassing, I think it does mess with me a little bit, but, Also, I'm really sensitive to when people have like fires. So I've been, gosh, there's just, I don't know what neighbor it is, but someone keeps having freaking fires at night and it messes me up so bad. So I still been sometimes sleeping in my car and I'll just drive down the road and park somewhere where I can, where I don't smell smoke. So it's not Oh, I bought a trailer and everything's perfect and I'm feeling so much better. Gosh, there's still hurdles and hoops to jump through.

Melanie Pensak:

Yeah. I feel like that's something that's really important to highlight, but none of these. Options are perfect, but you work your way through them and adapt as you go along, really, because you can't always predict, what's going to be a trigger. Sometimes it's different from day to day,

Unknown:

Yeah, yeah, it's so

Melanie Pensak:

crazy. To learn to be adaptive and to roll with it. I'm glad that you have stepped into that and that you and your wife are exploring that journey together. what's it like to, how do you support one another through the process?

Unknown:

it's, it's definitely, I think maybe just in our situation, it's easier that we both have CIRS just because. When I don't want to get out of bed, she, she gets it. When I have the mood swings, she gets it, or when she's laying in bed and she just has no energy, I get it. It would be hard, being with someone. It's sometimes we, we tell someone, hey, she's freaking tired, and someone would be like, Just, just go exercise or do something and you'll feel better. It's it's so hard to explain search to someone. It's man, it literally feels impossible sometimes to do stuff. It's you have a huge list to do. And sometimes just getting up and taking a shower is it's a win, but at the same time, it's so frustrating.

Melanie Pensak:

I completely understand. There is. this meme I think I saw on Instagram somewhere that said, my fatigue is not the same as your tired. Yeah. I think that's a really important piece to highlight for people in the world who don't have CIRS that fatigue is a significantly different experience than just, if I take a nap for an hour, I'm going to feel better and be able to get through the rest of my day. Fatigue is really, It impairs your ability to move your muscles and your basic daily functions. And sometimes you are weighing out, yeah, am I going to take a shower today? Or am I going to cook my food today? Or, you really have to sometimes make decisions like that. I think that's a really beautiful thing to point out to all the people listening that don't know, what CIRS is. And it's really not helpful just to take a nap or the rest of our couple of days. I think everyone has that experience of, you have the flu and maybe even you're sick for a week and then you're better. You go, your energy comes back and it. The turnaround time is not the same because of all the mechanisms that are so complex in our body. And yeah, that kind of brings me to the next question is, what do you wish people in the world knew about CIRS? Those that don't have CIRS, what do you wish that they knew about the illness?

Unknown:

I always think it'd be so cool if if you, if someone, if you could just put someone in your shoes, like real quick, just, okay, here, you're going to be in my body and my mind and This is how I feel and gosh, it would be so much easier, but I just wish people knew that it's real and It's hell. That's the best. I just wish people knew that, you know It's like I don't even tell people what I've gone through except people that I know understand it because most people they They just don't understand and it's, I feel like it's a, sometimes just a waste of time.

Melanie Pensak:

I hope that is something that this podcast does is start to shed some light on what the day to day experiences are, for people like us going through this, the decisions we have to make, the, level of fatigue that we feel, the ongoing awareness of exposures that we have to really consider on a daily basis, that the more people know about that, I think that there can be more, empathy and more understanding. But if, if people don't understand that it's really hard for them, as you're saying, to, to be able to wrap their head

Unknown:

around it. Yeah, I was, I was talking to, to one person and Jess was trying to describe it to him and he was like, Oh yeah, I know what that's like. Have you ever worked night shift before? I'm like, Oh my gosh. Like dude, he, this person was comparing working a night shift for work to service. I'm just like, Oh, like enough. Like we are not, this is not even worth attempting to describe us. So yeah, it's just, it's tough.

Melanie Pensak:

If you could. Have one magic wish granted, what would you ask for to happen within the CIRS community?

Unknown:

This is a hard one and I'll just talk into Jess about it, but I just, I wish people could feel better faster. I've been, this is maybe seven, eight years for me and it's a long time, but I know there's people on the, the CIRS collective and they've been going through it for 30, 40 years. And she is. It's freaking hard, just not, yeah, just not feeling like yourself, like your personality is gone.

Melanie Pensak:

Yeah, I love that. I think you're pointing to preventative care as something that could really impact people profoundly. if this, this was identified. Much earlier on, if there were more doctors that were aware of this as a, an illness, then it would be pointing it out faster. If there were more functional doctors aware of this, they would be pointing it out faster. If, if we had an ICD 10 code. a diagnostic code that would probably get more exposure. And, and, we know that this is genetic, that 20 to 25 percent of the population has the genetic predisposition for this illness. And if we were testing the genetics at a much younger age, think about what that would mean for children and schools and colleges and living environments, how much of this could be prevented.

Unknown:

Yeah, definitely. And then same with, with the buildings and all that. They build them so fast and then we had such a wet winter and places, just the wood framings up, they get soaked and then they're just, they just keep going and they're putting drywall on and people, people just don't understand yet how, how much mold can, can mess someone up. And then, yeah. I believe I got the gene from my, I did get the gene from my mom. We tested her as well, and she's been really ill her whole life and 99 percent it's CIRS, but she's just been going to the regular doctors and they give her antidepressant meds, they give her pain meds, they give her fibromyalgia meds, and she's on all these meds. And does she feel better? Yeah, maybe a tiny bit, but nowhere to where she should. And if doctors knew more about it, it'd be such a different story.

Melanie Pensak:

Yeah, I'm sorry. Your mom is going through that. And it's unfortunately so common that she's going through to. Yeah. my last question for you is really what keeps you hopeful day to day, despite all the challenges you have a lot of positivity. And I'm curious, how do you keep going?

Unknown:

I, I just picture and think about just when I was at my complete worst and. I picture beating this thing and feeling better and Jess and I feeling better and being able to go places and eat things. And I just, I just want to come out on the other side and I just feel like it'd be such a big, such a big, not upset, but just gosh, I feel like the odds are really against me. And then also being able to help my mom. That's, that really keeps me going to just my mom and Jess. Yeah.

Melanie Pensak:

You have such a big heart and I'm sure that they appreciate all of the effort that you put in to learning about the illness and healing yourself is going to have ripple effects for, for both of them, no doubt it may take time, but I'm sure that they will feel the benefits of your health and the information that you continue to seek is going to impact them as well. So kudos for you for your efforts. for doing all of that and thank you so much for being here today and really sharing openly about your, your housing situation and transitioning to a trailer and what it's like for you and your wife. I think these are all really day to day things that are going to impact people and get them thinking. And, thanks for sharing your heart and I have big hugs, much appreciation to

Unknown:

your friend. Yeah, thank you so much for having me.

Cheri:

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.

Bing.