CIRS Patient Nerissa Cannon: Adaptive Athletics & Real Experiences of Early Recovery

https://ko-fi.com/theheartofcirs

Nerissa Cannon on Instagram

Allin Capsule

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. Hello, everybody. Today, I am looking forward to being in conversation with Nerissa Cannon. She is somebody that I've connected to through the online world of Instagram. One of the gifts of social media when going through an illness and feeling isolated is really coming across folks who are going through similar experiences. and who are engaging with the world really in inspiring ways. Nerissa has a CIRS diagnosis and her profile is filled with photos of her outdoors, adventuring, using adaptive equipment to help her access trails, mountains, and even rock climbing spots. Nerissa, I think we both share a deep love. for the natural world and value the importance of play outdoors in our lives. And so it's really a pleasure to have you here to talk more about these topics and service today. So thank you so much for

Nerissa: 2:00

joining. Thank you for inviting me. So tell

Melanie Pensak: 2:06

us a little bit about where you live and play outdoors and how you got involved with adaptive adventuring. What led you to that

Nerissa: 2:14

place? Yeah, so currently I live in southern Utah southwest Utah, which is an incredible spot to live if you love the outdoors. I'm essentially central to about five national parks, so Bryce, Zion, Capitol Reef are very close. And then a little bit further you'll have, Arches and Canyonlands. Even... Outside of the national parks, we've got Town of National Forest, BLM, just an incredible area to Enjoy if you love the outdoors I live in a smaller town which can make navigating, there's challenging, but it's definitely worth it. I am able to live out on some farmland in a tiny house. But I, as far as how I got started with doing things adaptively, I was about, Oh, gosh, it was maybe it was 12 years ago now. I had moved. I'd left college. I moved to Aspen, Colorado, and I started learning how to ski. I ended up working on the list, and this was before I noticed any physical symptom and. And, and then I lost skiing when my physical symptoms developed, and I was still living in Colorado at the time, and I was actually, I was pretty pretty low, I, I did not want to continue living, I, I found my physical capabilities, what I defined myself with, what I defined my worth with was, how active I could be, how much I could move, how independent I could be, and when I, when I lost that And I, I couldn't find a way out of it. I remained undiagnosed or misdiagnosed and ill treated by the medical community. And I reached a pretty dark place where I was, I was making plans to take my life. And I had a friend tell me to not, to wait six months. I don't know why, but she asked me to wait six months. And if I waited the six months, then she would understand. And I was like, okay if I've got six months, I'm gonna make the most of it. And I ended up connecting with an organization that, called No Barriers. They're a non profit founded by my now friend, Eric Weinmayer, who was the first blind man to summit Everest. And... They do these summit events where they introduce people with a variety of abilities or people from different communities caregivers, youth, veterans, to ways to adapt to different activities and to life in general. And I got a scholarship to attend their 2016 summit in Copper Mountain, Colorado, and I I didn't really know exactly what to expect, but it was the first time since I got sick that people were looking at me with what I had to offer instead of where where I was weak. When you're seeking diagnosis, everything's focused on what's wrong with you, what's going wrong, how is your ba life bad today. And this was the first place that elevated what I still had available to me. This was the first time I was really exposed to that and to many people who thought in that same way. And so through that, I ended up partnering with a company that makes hiking wheelchairs. And so I started. using one of those and seeing where that could take me. And through the connections I made with No Barriers and that hiking wheelchair, a couple of years later, I summited my first Colorado 14er. And for those who don't know what a 14er is, It's a mountain that's over 14, 000 feet high. So I did most of it in my wheelchair with a rope team, and then the last bit that the wheelchair couldn't handle, I actually, one of the teammates carried me over the boulder field to the top. I continued to just see what I could do. I started rock climbing after the 14er event with an organization called Paradox Sports. And started to connect with people in the discipline of rock climbing that was most suited to my abilities, and I guess I just, it was that mindset of what am I still capable of that led me to continue to, to just push and try different things, and I was able to get back to skiing eventually, I am a sit skier currently but, And that was really where it started to come full circle, was cause skiing was like oxygen to me. So to finally be able to get back to skiing was huge. I would like to, if I could, ski on two feet again, but it is, it's good for now. That's so

Melanie Pensak: 7:25

powerful. Thank you for sharing so honestly about your journey and how you ended up there. It is so true that when we have an illness, so much time is focused on what symptoms we have, what's wrong. And on some level, That's the world you're in. You're trying to figure things out. So it makes sense. But what a refreshing reminder that there is also this different way to look at what's going on in our lives and. It's really interesting to me that you were able to get past that mental hurdle and find some purpose through being outdoors and being able to show up again outside. I know for me going through my experience, I've had physical changes and. My legs were hit really hard. My arms have been hit really hard. There was a time at the first part before I got diagnosed with SERS that I was in a wheelchair off and on for a little bit, but I go through periods of varying levels of weakness and strength and some days it's fine and some days it's not. And. It's really a disorienting process when you start to lose your physical abilities where things are changing like that. And I've had to really process like, what do I even consider myself? And I'm comfortable now with the language of dynamically disabled where some days I'm very capable and other days I need supports, but it is very disorienting. And I was also somebody that I would hike for miles and miles. In the mountains and it was very active and to have that change for me, it was really abruptly. I don't know how abrupt it was for you. It's been a process to, to grieve that and to understand how can I still show up in the world? And I find it really, I'm curious about the equipment. Like, how did you feel safe with an adaptive wheelchair or adaptive skiing equipment or rock climbing? Did you have to reorient to safety at all? Because my body sometimes feels so unreliable that there's almost Just a fear of going out in those spaces and something happening in those spaces. So how do

Nerissa: 9:54

you work with all of that? Yeah, that's a good question. At first I, I guess I trusted the equipment more than my body, as silly as that sounds. I I learned that. It was I'm not a comic book nerd I'm gonna get, if, if I'm quoting anything comic book related, I'm probably gonna get it wrong, but from my, my experience here Batman does not have any superpowers, all of his superpowers lie in his equipment, in his adaptive equipment, and that's how I started thinking about it is where, I'm limited. The equipment is making up for it, and I could trust that more than I could trust myself. Now, there is still that aspect of If I'm using my crutches, I still need to be able to have my legs function to a certain point and navigating that has been very difficult and a big blow to my ego. I went to an ice climbing clinic in a couple of years ago and I was able to crutch into the crag. I only did two climbs and I could tell in my body, I... Needed to stop mm-hmm. because I would not be able to get myself out if I continued. And it, people would say, you sure you don't wanna climb again? You sure you don't wanna climb again? And they're just being nice. But it made me, it makes me feel weak. It makes me feel less than, and so I would say that's a, something I'm continuing to navigate over and over and over again, is how to listen to my body. Today in the moment and not just say I did this once. I should be able to do it again, or today even, it, it becomes a challenge. And then you just have to learn to, to deal with your equipment similarly to how you would your own body. I need to have a backup. tube for my wheelchair or an emergency CO2, thing to fill it if it gets a flat or I need to be able to have an allen key to in case I, I go on trail with an allen key with my crutches and extra tips because I've lost tips and mud crossing streams before. And so now I carry an extra tip so I don't have to, search in the mud or risk just having to hike on a pole, which is not going to happen. I'm not going to go very well. I think it's just, it's learning the parameters in which you are now having to function and I, I completely relate with what you said is, is there is a, there's a dynamic component to what, to the mobility that I deal with where there is a baseline, but some days are a little bit better, and then some days are worse. and You might make a plan to do something thinking that that's within your ability and then you get there and, your body says, I am not up for this today. Yeah. And I, I am incredibly stubborn and I don't always listen to what my body wants to do and I end up paying for it as well. So that's something that I've, I'm still navigating.

Melanie Pensak: 13:08

Yeah, in the SERS recovery process. I think it's so important to highlight this point that it's an opportunity to get really intimate with your own body. And it's a process to develop that skill and to also, yeah, learn to say no, if something is too much. I know for me, I'm still learning that as well, because it continually changes as I go through the recovery steps and. Different points in the recovery process for SERS bring up new challenges and you have to pivot to that. It's hard. I think 1 of the pieces that I have to work with is. I don't know if you've had this experience, but just being able to show up and explain that even with other people, because sometimes I can be okay with the dynamic ability of my body, but it seems to be confusing for others to understand that. In one moment, I might be perfectly able to, like, walk to the mailbox and go and get my mail or walk around the block, and then I can't do it again for two weeks. And it's really interesting to see the reactions from other people around that. And I'm finding myself really having to be an advocate and educate people on what a dynamic disability is, because I think people have sometimes a certain viewpoint. And then they expect so much from me physically and I have to be like, wait a second I have to remind you I might be able to do this today, but I might not be able to do it tomorrow. And that's not necessarily a backslide. It's just the reality of a

Nerissa: 14:59

changing body. I think I've been lucky in that the people I've been around, if they have thought that or felt that way about me, they haven't overtly expressed it. My biggest critic is within I feel constantly, constantly, every day, like, why, like, why can't I do this? I did that before. Or why is this so much harder today or right now than it was an hour ago or yesterday? I, I, I find the people around me are much have much more grace for me. Then I have for myself. So maybe I've been lucky.

Melanie Pensak: 15:53

Yeah, it sounds it brings me to the question of when you came to your CIRS diagnosis, did that help with the ability to be kinder to yourself around your abilities? From what I understand? That came later, the SERS diagnosis. And so how do you process that within your, your physical body? Like, how does that intersect with the development of, of your abilities over the years?

Nerissa: 16:26

Yeah, my SERS diagnosis came nearly 13 years after I first started getting sick. I. Where I understand, now that I understand it, CIRS, I, my CIRS actually started pretty much exactly 13 years ago now it started with severe, almost overnight, mental health issues I had a triggering event, I was living in severe exposure that's actually an interesting exposure, I was actually, I was living in housing that was supplied by my employer at the time, I won't say who just in case, But I was supplied by my employer at the time, they couldn't rent it out to the community, it was a seasonal employment, and I was living in it in the off season during college, they couldn't rent it out to the community because it was technically condemned. And I said, oh why is it condemned? And they said, oh, it's because there's bats living in the walls. And I haven't been bothered me. I love that. But I didn't understand, like, all of the issues that can come from that. And so that's what I was living in. And obviously I have the gene that makes me susceptible. And then I put myself and lived in that building for two years. So it started as mental illness, severe mental illness. I... Developed a severe eating disorder, and it was about three years into the mental illness that the physical symptoms started, and I navigated that with, eventually I came to an identity of, undiagnosed, living in ambiguity, finding ways to push forward in ambiguity because I, I knew I, I learned it two years, about two years into when the physical symptoms started, that if I went into, if I was going to wait for a diagnosis to move my life forward or enjoy life, I was, I was never going to happen. And I developed an identity around enjoying things in ambiguity and how to navigate getting adaptive equipment with no financial support because when you're undiagnosed you can't get grants, you can't get insurance help, all of that. And that's the identity I live with. And I identified as disabled but not sick. I left sick far behind. And then, I got diagnosed with CIRS only four months ago now. And I've been actively in treatment for three months and it's been another reestablishment of my identity where now I, I do feel like a sick person and I don't like that to be honest. I, it's, it's not just that I'm disabled, but as far as, am I able to give myself a little more grace? Yeah. I'm able to actually give other people a little more grace. One of the things that I would get really frustrated by is when I would, I pride myself on my memory, and I would think, I would remember very clearly something happening, and somebody else would remember it differently, or I wouldn't remember something that someone says happened, and it made me feel crazy. And then when I learned about CIRS and how it's affecting my brain and I have, I've had the NeuroQuant, I know where I have atrophy in my brain that is a proven thing that I have, and... I understand now, oh, I literally just, I don't remember that that happened and I'm sorry. And I don't put that on other people now, that I don't remember, I don't get angry at them because I don't remember something and I think they're just trying to make me, I don't think they're, they're just trying to gaslight me. So it has allowed me to have more grace with other people. But I think in some ways, if I'm being completely honest having the CIRS diagnosis now, I, I'm like, Okay, now I know what's wrong. Now I'm going to fix it. And I'm going type A on that side of things. And yeah, I'm not letting really giving myself grace. I'm I have, I have pushed myself pretty hard already. And I'm, I've, I'm, I'm, I'm learning with a current setback, I'm experiencing that You can't force anything, really. I could, in my doctor, Want to ask if I wanted to go, I've got some dysbiosis, some bacterial growth in my gut and she was like, do you want to do the gut protocol while we're doing all this stuff or, or space it out? I'm like is it counter indicated? Would it affect anything negatively? And she said, no. And so I said, yeah, let's just do it. Let's just get it done. Let's just get it done. And. And I'm wondering if, if that pushed me over the edge, or if maybe, the, I was taking the amount of the binder I was on maybe was more than my body could handle. I always expect I can just push through it and tough it out, and my body is just not having it, and so I need, I'm still learning to give myself a little grace through the diagnosis. I just want to fix it now that I know what's wrong, and that's just. not reality and how it, how it is, how it works.

Melanie Pensak: 21:53

I appreciate your honesty with that. And I laugh with you because that is me. I definitely have that type A personality and all right, let's fix it. Let's move this along. And. If I'm being honest, I have the idea as a high achieving person in most areas of my life. I'm going to be the first person who gets through this protocol the fastest, I'm like, I'll do it. I'll follow everything to a T and it'll be done and done, and. My body was also not having it. And for me, it was about seven years before I got to my diagnosis. So that's many years of just different systems of the body becoming more dysregulated, dysfunctional, and the body needs time to to process the toxins to get things out and to go through the steps. And. I have also pushed myself too far and seen it backfire many times. And 1 area is specifically related to gut. For me, I've had years of gut issues. That was really my 1st issue that came up and. I've gone through different gut protocols at different points in the recovery process and every time my body just says no. And it's not where I just have a small reaction and bounce back quickly. It's like huge amounts of inflammation. Really strong. Reactions to herbs and supplements and, and I'm, I'm in filled with infections. Like my infection level is pretty crazy right now, but I'm stuck because I have to pay attention and go slow and, and listen to the body. Every time I try to push it, it has its own way. And it's really humbling. It's really humbling to have to just slow down and stop and say, okay, you're, you're in control here. I have to completely surrender to when you're ready. And it's hard though. It is. It's hard.

Nerissa: 24:01

Yeah, especially when you have been. Sick for so long. And like you said, I did the same thing. I went all in. I did you doing everything they asked me to do. I, I am doing supplemental oxygen at night. I do every supplement that I recommend. I space everything perfectly from my binder. I track everything. I, and I'm, then it's just not happening. And it's I can't, there's, you can, it's like you can only con, you can only control so much. And that, that surrender aspect is really frustrating when you've been sick for so long because you're so ready to get better. You'll, you'll do what it takes to get better. And then you really. It was described to me by a nurse practitioner at the clinic, at the SERS clinic I go to. I was expressing some frustration that I haven't seen the improvements that I, I hate to say it this way, that I felt like I was promised. That sounds so, so privileged or entitled. But I was expecting more after three months of being on the binder and doing everything they said. And she said what we've been doing, I've, I've unbended my life, I've changed my lifestyle, I've, I've, my work is luckily flexible and they let me go remote. We're building, I live in a tiny house, we're building a completely external decontamination room with a shower and a washer and dryer. There's been a lot of expense and a lot of effort within the last few months. So I should be getting better, I've earned the, she said will we? are just removing the obstacles to healing. You haven't even started healing yet. I was like yeah it was really hard to swallow. And, but I do, I honestly, I repeat that to myself multiple times per day. And I hear all of the, the cliches of healing hurts. And, they, if you can relate it to surgery, surgery will make you better, but they tear you apart first. And... I sometimes, I'm sorry, I'm bringing all these analogies in, but it's how I process my experiences. I also, I often feel like that car that someone didn't take into the shop for a long time and now they finally need an oil change and they go in for the oil change and then they find this thing wrong and then they fix that thing and then they find that thing wrong and everyone I'm sure who's owned a car has had this experience and they're like I'm never going to the garage again because once I start fixing something, something else breaks and that's how I feel with my bodies. The way my tests are coming back still, they're like, oh, you have this autoimmune disease is starting to turn on. We have to keep an eye out on, and then, oh, now you're having these liver issues. And now it's I was just coming here to get the biotoxins out and then you were gonna heal my brain, and that's how it was gonna be. I didn't know that. They call it multi system, multi symptom illness, and I'm, I think I'm finally really starting to understand what that means, because they're trying to heal everything. Everything is malfunctioning. And when you fix one thing, it affects another thing, or when you try to fix one thing, it puts stress on another thing. And it's complicated, and I wish it was straightforward. Yes,

Melanie Pensak: 27:33

the shoemaker protocol is this very laid out triangle, like you start at the bottom and you get to the top. And in my experience, it's 2 steps up 1 step back circle circle around circle around 3 steps up. Oh, there's another spiral back down. Yeah. I'm. At the top technically right now on, on VIP been on full dose VIP for, for five months and there's still things that we're playing whack a mole with because, as you pointed out, something shifts over here and then something else changes, or you have an exposure, or... hormones change or, diet changes in some way and something else gets out of whack and it's, it does, it feels whack a mole just trying to, to put out fires as they, as they come up. And at this point I can ride the waves and sometimes even laugh about it, believe it or not, but it is a hard, a hard part of the process, I

Nerissa: 28:32

think. Yeah, I'm like, I'm not trying to discourage anyone who's just getting started with this, but I think because the shoemaker protocol is so clearly outlined, I, I knew that healing wasn't in a linear, wasn't going to happen linearly, but I, I guess I didn't expect to feel like I backslid and got sicker than before I started the protocol and I don't know what your experience has been, but that's where I'm at right now. I just got in some today. I just got results from. Redoing certain labs and some of the main markers of STIRS that we go over, TGF Beta 1, MMT9, Badge F multiple of those that we retested. I was, I started before binders or anything, I started with a couple of the big markers in healthy ranges. I, yeah, I was like, I'm like further along, it's not going to be as hard. And now I have crashed those. Currently, so in a sense, I am thicker than I was when I started, and on paper, and yes, by my experience, and I think the hardest part when you're in that place is to stay the course. That's, so that's, that's, that's my goal each day is just to stay the course right now. Because I know the science is sound and. That's what I'm trying to, to trust in right now. It's very difficult but I don't want to discourage anyone who's just getting started, but I think I would, I, I would have appreciated a little bit more of a realistic approach, start going into it for myself, that this could happen. I didn't, I didn't think that this was what could happen. Does that make sense?

Melanie Pensak: 30:30

Absolutely. I completely relate to what you're saying. I like to know the reality of things. And it is a very effective process. And I do think that sometimes the, those delicate pieces of how hard it can be in the up and down are omitted when people are talking about it. And so I think it's really important as you're saying to not discourage people, but to be really real that it's not always. rainbows and roses. And, and that there are times where you may feel sicker and, and then you get, feel better and something shifts. I definitely have had that on my journey too, where numbers have unexpectedly jumped up very, very high. And then, That felt really discouraging after so much work. I'd say that was for me probably about six months into the protocol. My TGF1 was hugely high and I had been doing the actinose protocol for a while and was really upset and, and as we learn more about these different bacterias and how they affect the body and how things change. I learned that, for example, TGF beta 1 could spike for a while while we're working on actinos, and then it drops again. So there's new patterns and things that they're learning because this biotoxin illness world is really ever evolving right now. And yeah, it's, I think what you pointed to with trust is really a big piece of jumping into this protocol because We have to trust that, the research is sound and that it works and overcome it and are functioning, including many of the doctors that we see and I think it's important to be in community with the people who have gone through it and overcome SERS as a reminder that it can be done. I think about. Several of the SERS doctors who have had this and they're quite functional and doing a lot of great work in the world and, and people who have become IEPs or health coaches and, I, I have to look to them as reminders okay, when I feel terrible because I just cleaned my bathroom and I can't move for five days, that there is possibility of really overcoming this. And it takes a lot of mental fortitude to remind yourself of that daily sometimes.

Nerissa: 33:02

Moment to moment sometimes

Melanie Pensak: 33:03

for me. Yeah, I, I absolutely hear

Nerissa: 33:06

you on that. Cause it's, it's, serious becomes all encompassing for your life. It feels everything from the moment I get up and what can I eat? Of CIRS. What, how do I have to time things because of CIRS? What do I have to clean because of CIRS? Where can I go because of CIRS? How do I have to wash my dog's paws off? How do I, what? Timing my shower so that I, can go to bed with clean hair. All of these things. Yeah. How often do I just, every your life is, changing clothes after you've been somewhere. It's just completely all encompassing. And. I think, yeah, you just, for me, I've tried to find a couple of things that are separate from SERS that have nothing to do with SERS and, and in the end, it all still feels like it comes back to SERS, but I don't know if you've, you've experienced that to have something that just is not necessarily Connected at all. But that's something I've been striving for. Absolutely.

Melanie Pensak: 34:16

I think that's such an important point to bring up to people who are going through it. Once you get through the initial phase of finding a safe home, feeling safe in your environment and getting your finders going and your medical team going, I feel like then there's some space that opens up. To be able to even think about things outside of service, even just a smidge, I think for many people, there's this critical period of time. And I want to point this out for people who are listening who might just have a friend or family member going through it. The 1st multiple months are very much oriented around the patient feeling safe. Because our fundamental safety is threatened where we live, our beds, our bathrooms, everything we do becomes unsafe. And so during that time, it's there's no space for anything else, but finding that home, getting your medical team going and figuring out, your food, your medicine routine and everything. And then I would say, in my experience, working with people and going through it, once you're. Maybe where you are. I don't know if you can say like around three or four months. It's okay, maybe there's a little bit more space to occasionally think about something else. And for me, yesterday was actually my birthday and I just made a commitment that. The whole day I was not going to do anything related to SERS because so much of my life has been revolving around the diagnosis for the last 15 months. And so it was so wonderful. I listened to my favorite music. I used to salsa dance. And so I was just sort of like letting myself think about that. It moved my body a little bit to some of my favorite salsa songs. I was writing because I enjoy writing a little bit. I was looking at the clouds outside and just allowing that time with nature and watching some television shows that really uplift my spirit and, for example, Queer Eye, Love Jonathan Van Ness, and the Fab Five, like anytime I'm feeling low about myself, they just really bring me up and, just remembering like who I was before SERS and what I enjoyed, talking to friends and, and, more creative endeavors, I think, for me, are things that have gotten pushed to the side and are really important to tap into when I have the energy to, to remember a different side of myself.

Nerissa: 36:51

That's awesome. I love that.

Melanie Pensak: 36:54

I'm curious as we go through this, and I know one of the random things I wanted to bring up about serves that I saw on your Instagram was about you making CSM capsules. So I was wondering if you'd share a little bit about this. I want to frame this a little bit for people. One of the binders that we have to go on that removes the biotoxins from our body, cholestyramine, and the short abbreviation for that is CSM. And it is a white powder that you mix into water typically, or you can mix it into juice. And it is terrible. It is chalky and pretty gross. It sticks to your throat and on your teeth and everything. And I've actually been drinking this. Three times a day, 30 minutes before meals for what, nearly 15 months. Because I still react to it to know my CD is a bacteria, so I still have to be on it. And I call it my cholestyramine cocktail now. I put a splash of bubbly water in it, and I put a little applesauce in it, actually, is how I end up getting it down. That's my, my cholestyramine cocktail. But I saw on your Instagram that you're making your own capsules, and I just think that's brilliant. So I was hoping that you could share for all those of us out there. What you use, how you do it,

Nerissa: 38:16

how you came up with that idea. Yeah I, I try to keep things in my diet as clean as possible. I've been low carb, no sugar, no grains for many years. And I, even before Thursday, for the last year, I've been mostly meat based. And so I don't drink juice. I don't have these things in my diet. And cholesteramine came into effect I knew I would go, for, also for people listening, there's different types of cholesteramine you can get. There's some that mix well that have artificial sweeteners, which really aren't that great for a lot of people in certs, because that can cause inflammation, so it's a double edged sword, but they do mix better, and there's a little flavoring in there. But for me, I knew I would go with the pure resin powder like you talked about, Melanie. And... I, I have this, I mostly have to be dairy free. We found through testing that I have inflammatory reactions to dairy. My, my options if I'm not drinking juice, and really eating much in the way of sugar, and trying to get the cholesteramine are very limited. I have this coconut milk that's literally just coconut milk, and coconut water, and some xanthan gum, which is a natural thickener. So I was mixing with that and it was fine, but when you get up to that full dose of cholecystermine, you're drinking that 16 ounces of that a day because each one you have to do, two to four ounces. And that was, I did the calculation of how much that's costing me, and it's not very convenient. I even got these little, if you are still mixing the liquid, here's a little tip. There's... About five ounce little silicone flasks you can get that are meant to mix energy gel in when you get powdered energy gel, and you can, because the, they'll suggest taking it in jars. And I'm like that could break, but I can throw one of these in my, in my purse and I could take it with. So if you are still doing it liquid, I recommend the five ounce flask. Silicone flask. But. Yeah, I, I just did not want to keep having to buy this milk and then coconut milk and I, I, I, there was still a lot of sugar from the coconut water that's in it. And I'm like, I'll just try it with water. How bad can it be? How bad can it be? And Melanie, have you tried it with just water? Oh yeah, it's so terrible. Oh, it was, it literally just created like a block in the back of my throat. I was like, what? This is so chalky. It was so bad. And I'd heard about the encapsulated cholestyramine. And the pharmacy that I get it from will encapsulate it for you. However, even at the special pricing they give my STERS clinic, it's double the price. of what the Colostar mean is on its own. It's double! Which is, which is not cheap. That is when you're, especially when you're already, paying for appointments and tests and supplement, other supplements and things. It's not cheap. I, I, I heard you could encapsulate it yourself and I started doing some digging. So I found this little machine. It's called the All In Capsule. And you won't find it on Amazon. You'll have to get it directly from their website if you're interested. And you can buy it in different sizes. I went with the largest. I did a triple zero. I know that's a big pill for a lot of people to swallow, but I wanted to try to keep as few capsules as possible going with myself. And then I followed the instructions and I made a batch. It makes a hundred capsules at once. I would say it maybe takes, it takes me less than 15 minutes to make a hundred. And that'll last three and a half days at a full dose of colostyramine. The biggest thing you'll want to do, no matter what size capsule you choose, is once you've made your capsules, take the scoop or whatever they have you measuring your dosage with, and make sure, open the capsules, make sure that the amount matches. What you should be taking and know how many capsules that that is. So for me, that ended up being seven triple zero capsules for one dose of Choles Thiamine. Mm-hmm. So I was, I was taking 28 of those a day at a full dose. Wow. Yeah. And I, and get a pure capsule, I, I get a bovine capsule bovine gelatin. And you can just get those on Amazon for There's 20 at most for 500. So the, it is actually saving me money than buying the coconut milk. And it's significantly cheaper than having the pharmacy do it. I even spoke to the pharmacy about doing this myself. And I told her how I reopened the capsules and measured. And she's okay, you're good. So she's totally fine with it. Totally supportive and so is my service provider. What's great about that is because I, I, I do work for a backpacking company I can't go on all of their monthly trips, but they do monthly company trips and recent, recently and in June. There was one, and I wasn't sure how it was the first one since theirs, and I'm like, I need to take colostyramine on this trip. That's what prompted me to do this, because I needed to take colostyramine in the backcountry. And it's, having it encapsulated has just been incredible for keeping me consistent. I can just throw it in my bag if I'm going to have a busy day of errands. It's, yeah, I highly recommend looking into it. It does take a little time, but honestly. It's like I said, less than 15 minutes for every three days you use it to me is worth it.

Melanie Pensak: 44:03

Absolutely. Yeah, definitely. If we can save the mixing and just make it a little bit easier, then that's a fantastic option to speak with your doctor about and make sure you're getting the dosing right and everything.

Nerissa: 44:18

Absolutely. Yeah, that's my big thing is don't guess based on how the capsules look because capsules can alter. How it, it can appear. There was somebody in the SERS group that I'm a part of that did it and after I did mine and I mentioned how I opened them and measured, they're like, Oh, I was, I was just eyeballing it, but I guess I was taking like half of what I should have been. So it's really important to make sure you are getting the dosage right. So make sure that that happens. But yeah, I, I, I won't, I'm, I'm off cholesterolamine at the moment with The current setback in the symptomology I have, but I, I've got, today I spent time encapsulating my latest batch and it's ready to go for when they can start me again. I won't go, I won't go back to mixing it. Less dishes too, when your energy is limited on CIRS as a plus. Yeah.

Melanie Pensak: 45:12

Yeah, if you have a high energy day, take those and get it done.

Nerissa: 45:17

Exactly. Exactly. So

Melanie Pensak: 45:20

as we wrap up, I have just a series of questions that I ask everyone I'm in conversation with. And the first being what do you wish people in the world knew about SERS?

Nerissa: 45:32

That it exists. I, I feel like, I maybe could have gotten help sooner. I wish more physicians knew about it, knew how to test for it. I wish there was more support for it. I think just the fact that acknowledging that it's real, that it exists, Is the key to getting CSS patients what they need to get better. So yeah, I think I just, people wish people knew that it exists. and what do you, so that if they're dealing with it Yeah. That they can get help.

Melanie Pensak: 46:07

Absolutely. What do you wish Nons CS doctors knew about Cs?

Nerissa: 46:13

That it exists? I hate to sound like a broken record, but if I hear about so many people trying to access the blood work And they'll even say that there's no such thing as MSH. They'll tell people. And just because you don't know about something doesn't mean it doesn't exist. And but that's what I dealt with my whole, I've got a great deal of medical trauma I won't go into, but doctors not believing that something outside of their knowledge exists. Not being willing to expand. So that they can help more people get to root cause healing. I, I don't know why there's such resistance to that. I, I think doctors should have a little bit more humility and in that the human body is a complex thing and they're being asked to know a lot. So maybe they need to realize that somebody might tell them something that they don't know and that it's an opportunity for them to learn so they can better help someone. But I think just don't dismiss. patient. And for people who live in small towns like me. So every time my clinic is out of state it has to be they're an eight hour one way drive from me. And so when they send blood work, it has to go to generally through lab core, everyone's familiar with lab core or quest. And The closest draw center for me is a two hour round trip drive, because they might be, Oh, you need to go get this, this blood work. I've been dealing with this over the last week with the acute symptoms I've been having. They're like, Oh, we need, we need to get some stat blood work on you. We sent your order and I'm like it's going to have to wait a couple of days. I need to figure that out, like I can't just go, but if they were able to just send. to my piece, to my primary, and he was supportive and he could send it to my local hospital. I could get it done so much easier. It would just, if we could have the support and the integration of non surge docs with. Thess specialists. It, it, it could just open up such a better treatment option for people. Agreed.

Melanie Pensak: 48:25

If you were speaking to Thess community, the doctors, the IEPs, and you wanted to have one magic wish granted, what would you ask for?

Nerissa: 48:38

Oh, I would wish for, There to be more of them, because I think more people are learning about CIRS, I think that's a good thing, in that people are going to finally start to get healing, but I think they're overtaxed right now, and There needs to be more people who can do it. And yeah, the ThruDocs and the IEPs that are currently existing, I wish that they could become mentors for another, a new generation. They could come in and, and continue to help people. And last question,

Melanie Pensak: 49:27

especially with you being a newbie on the SERS path you sound very optimistic today, but what really keeps you hopeful day to day?

Nerissa: 49:40

I think just the fact that other people have gotten better. Some days I, I wonder if maybe I'm too far broken to heal. But I, then I have to think to myself. What makes me so special that I think that I'm the one person this won't work for that it's going to look different. It's not going to be a neat pyramid and you're, I was given 12 to 18 months and I think that's what most of us are given an average of like 12 to 18 months. And, and the reality is that depending on your physiology and how it has affected you, me, it may be less, and it may be more, and, but, from everything I've understood, that as long as you follow the protocol and the plan the, you will heal, and, I think it was Dr. Dorninger I heard one time say, the people who aren't getting better, it just means that something got missed, and they just need to dig more. Maybe there's a latent infection in a root canal that, failed, or, that there's always. more to look at to make sure you can heal. It just, the body's

Melanie Pensak: 51:09

complex. Nerissa, thank you so much for sharing everything that you shared today. It was really a fascinating conversation. Thank you for sharing your heart and being very vulnerable and open about your past and your journey and where you are today and the reality of the. And I'm really grateful that you came on to talk to us today. It's been really inspiring. I'm sure people will want to follow your journey and your path. You're very vocal and open about what you've been going through. And how can people stay in touch with you and continue to follow your journey?

Nerissa: 51:52

I thank you. And I mostly will post on Instagram at Nerissa underscore Canon and Nerissa is N E R I S S A underscore C A N N O N. And yeah, you'll, you'll see, yeah, I'll talk about CIRS on there, and you'll get a lot of, fair warning, you'll get a lot of goat content, you'll, of my baby pack, of my baby pack goats. If you don't like goats, just don't bother, but... Ha ha ha ha, wonderful,

Melanie Pensak: 52:23

thank you so

Nerissa: 52:24

much. Thank you, appreciate it, Melanie.

Melanie Pensak: 52:33

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.

53:01

Bing.