Barbara & Jacie of The CIRS Group: The Benefits of Friendship & Community

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The CIRS Group

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

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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 Barbara and JC from the SIRS group. Barbara and JC started the SIRS group, an online platform and community that I will let them share a little bit more about themselves, but I've come across their work and connected to them through the world of social media. And I'm grateful to have the opportunity to chat with them today about some specific topics, that come up in our SERS recovery, friendships and community. So looking forward to diving into this with both of you. Welcome, Barbara. Welcome, JC. Thanks. Thank you for having us on. I'm really, curious to hear a little bit more about how the two of you connected with each other. For those that are listening, I want to share that JC and Barbara are both going through SIRS Recovery, and if you want to learn more about their stories and their experiences, you can find it Their recordings already recorded about their stories. We're not going so much into that today, but we'd love to hear how the two of you connected and became friends and how things started with the group.

Jacie: 2:24

Recently I went back and I looked at our earliest DMs. Barbara and I were actually friends before we were diagnosed with SARS. We connected through the carnivore community. And, we're very, I'm just gonna call us weird, weird people, and I went back and looked at our first DMs and was surprised to find that they were not weird, we were just like, supporting each other on the internet, so I think a lot of times we talk about social media being this negative, possible negative presence in our life, but it's amazing the connections you can make and the people you meet if you use it as a, a positive influence in your life

Barbara: 2:56

too. Yeah, Jaycee was definitely one of the few accounts that I found on Instagram that were, like an inspiration to me, something that I wanted to follow, as motivation because I was getting into Carnivore. Jaycee had already been Carnivore, I think probably about a year. when I jumped into it. So I found her account. She had a pretty big following and, I just loved all of the content that she or JC has very calm, and like pretty aesthetics and all of the nice things and very feminine energy as well on Instagram. So I was drawn to that. And so I just followed her. Like I followed any other carnivore influencer at that point. but yeah, at some point we just got to talking and, a friendship formed from

Jacie: 3:40

there. And through the carnivore community, we met Nutrition With Judy, Judy Cho, and she was the one who told us that we have SIRS. So I had been carnivore for two years when I had an autoimmune crash, and you can check out our full, SIRS stories over at the SIRS group. but at that point, Judy Cho reached out to me and said, I think the underlying cause of this might be SIRS. And then, Barbara, you can share how you got to the same point I did at around the same time.

Barbara: 4:10

well, I basically was carnivore for, six months and then a year and by the year point I, I was thinking, okay, why are my GI issues still there? that doesn't, come on. I've done, I've done all the things I'm supposed to do. so that was, that's when I went to Judy and, and actually I didn't even go to Judy. I can thank Instagram again for this moment. I was already friends with Judy. but she saw my post where I was just lamenting publicly that I still had GI issues after a year on carnivore. I wasn't even like that negative about it. I was just like, Oh, I'm going to start taking supplements again and see if it helps. And that's when she messaged me and was like, girl, wait, let's, let's dig into this. And that's where that started. That was the beginning of, 2022. and, and yeah, and within a couple months I had done a few tests through her and then, she realized that I should probably test for SIRS. So I got my, Jaycee and I tested I think around the same time we got, did our blood work within maybe a week of each other and then got our results pretty back to back as well.

Jacie: 5:15

And I think our biggest takeaway from that, that timeline and that experience of like first dipping our toes into the world of SERS was, we were so grateful we had each other, and we were going through it at the same time because it's a lot of information and I think a lot of people when they first Find out about CS and find out it might be applicable to them. You're just overwhelmed with the amount of information. And at that time, a lot of the information on the internet was very provider facing, so CS providers talking to other providers about cs. But as a CS patient, it's. It feels whoa, like how am I ever supposed to wrap my mind around this? And it just feels like such a big rabbit hole because there's so many different aspects to it that we were both so grateful that we had each other to lean on and get feedback from and be like, wait, am I understanding this correctly? And we would like, share our test results, share BCS test results, share the handouts that Judy would share with us just to make sure that we were understanding the information correctly. And then from that, we realized that having community and having support through going through a surge protocol is so important. And that's really when we started the search group really is, to serve 2 functions. 1 is to provide information in a more patient friendly way. taking the information from the providers and making it more accessible to the layman. And then the 2nd part is actually really building that community and making sure other people have the same support that we had just. inherently through our our friendship.

Barbara: 6:45

J. C. and I, one of many things we have in common is this ability to hyper fixate on things on topics. And SIRS was that. So we just were digging into it so much that we thought, gosh, we're learning so much about it. We need to share this. And so it just became, yeah, what we made what we wished we

Melanie Pensak: 7:04

had. I love so many parts of this. First off, just that the connection through social media to point to, you can love social media, you can loathe it, but I've also had really positive experiences with connecting to people, particularly during this pandemic. Period of my life going through a chronic illness. It is such a powerful place that if you find inspirational folks, to follow and to learn from, it can really be a support in your journey. Because, and a gift, I think, we're all around the world, but yet we're connecting through this illness and learning and growing together, and I think it's really sweet. Yeah, just connecting through dms and reaching out to somebody because. this period of life can be really isolating. I know in my own experience and, and talking to a lot of other people, when you start the process of getting your blood labs and, talking to doctors, there's so much that you walk away from, in your consultations and with your blood work and you're processing all of that. And it's who do you process it with? In my own experience. the friends that I had in my life that were trying to support me, this language, the whole new language of SIRS, it means nothing to them. And they can listen and they can be supportive, yet there's something that's so powerful about being able to Be having a language with one another. Like, oh, my MSH is this and what is yours? Or what did Judy say to you about this? And you just sharing and comparing and helping each other. That would be so powerful to, to have that experience. So I'm glad that you have connected and, part of the healing journey. Learning and sharing with others, giving back to the world. I think that's a beautiful gift. So, so thanks for, creating that. And I'm sure you're touching and helping a lot of people.

Barbara: 9:03

Thank you. Yeah. We're I, I know we both feel really lucky. to have each other, to have this group, to have the community, to have Instagram. Like even the people of beyond, who's just in the SERS group, like just all the people that we've been able to interact with that have helped us too. you, I think you mentioned Christian earlier, maybe when we were talking before, but, Christian of SERS Lab, also incredible resource. so many wonderful people like that we just never would have met had we not had SERS. So it's a nice, it's a nice silver lining.

Jacie: 9:35

And it's been incredible to watch people heal and watch them do the same thing is, as we heal, we turn around on this mountain of Sirs that we're on and help the people coming up behind us, just reaching a hand back and helping them forward. And, and it's we're this long chain of people now, and each time someone heals and starts reaching back, we're able to pull more and more people up this, this mountain of Sirs. And it's incredible to see we're becoming this avalanche of influence, and it's going to be really interesting to see. where SIRS awareness goes in the next few years. I'm hoping more and more people find out that this is a hope for healing they never thought they could have.

Melanie Pensak: 10:11

Absolutely. Diving a little bit more into the friendship piece and wondering if we can explore a little bit any experiences that you've had around friendships that have maybe changed during your service recovery. I know for me, I've had some really challenging situations happen and different friendships that have shifted and fallen away. And I think that. anytime that there's a difficulty in life, that's very natural. there are people that can step up and step in and be supportive. And then, I think it's really natural then to see that some friendships may not have. been based on what you thought they were, or just a natural ending and evolution of changes and friendship. But I just want to sort of acknowledge this piece of the SERS recovery for people because it's really real and I want to validate everybody's experiences with this part of it, that friendships may shift and change. And I have one story in particular that I'll share. there was, I, when I was going through my service recovery, I ended up in a city where I didn't know anybody during the pandemic. And that's when I got my sickest and was really stuck in a place where I didn't know anybody. And, you know, I'm in my late thirties at this point, starting to have a chronic illness during a pandemic in a new city. So it's right for having a difficult time connecting and making new friends. And so I was seeing a body worker and we had a lot in common. I had a lot of aches and pains, which were SERS related, but I didn't know it at the time and I was working with her and. we developed a friendship enough to the point that her car broke down one day and I, let her borrow my car, so we were friendly, and, and connecting in the wellness community and world as well. And I. was so upset one day because she said to me that she had actually had a conversation about my case. She was a social worker as well with her boss because she was really surprised at the decline in my mental health and how irritable I had become and that she didn't really want to have much to do with me from that point going forward. And It was this moment. I remember thinking in my mind, wow, this person in the wellness community that I thought was here to support my health and being was turning against me in a way, or at least that's what it felt like in that moment in time and was putting up a boundary of not wanting to interact with me anymore because of my irritability. Versus wanting to help me understand why that was happening. And I remember just in that moment feeling so hurt and, trying to process, this illness, something was going on. I knew something was going on in my body at that point, but we like, really couldn't put a finger on it. And. I feel like this is something that other people are going through too. there are changes in our, in our personality and the way that we're presenting in the world. And I want to. flag this, because if you're seeing in your friends or people that you know that there is a change in their personality or something is different, this could be a red flag for something in their environment triggering them versus it being something to turn away from.

Barbara: 13:45

That's a really good point. And I never, I never really thought about the implications of that. a lot of my unfortunate, unfortunately, or fortunately, I grew up and, born and raised in Southern California and a lot of my friends, actually fell off before I realized that I had SERS, but that was more for political reasons, I am no longer living in California anymore, so I think there's just a lot of separation there, For my actual SERS treatment, I think almost all of my friends have SERS or are, have become very well versed in it because they are in the carnivore space and they are, if not directly helping people with SERS, like someone like Judy Cho, for example, or, or they're, they have a lot of people in self hypnosis. in their own communities, following them that they want to be able to be a resource for. So other, other carnivore influencers that aren't necessarily, SERS oriented, but they're certainly familiar with it and have accepted it. So I feel lucky in the sense that the friends that I have, being that they're in the health space, almost every friend that I keep up with on, like a day to day or at least week to week basis is. knowledgeable about the keto or carnivore space. So I, I'm lucky in that a lot of my people are, are open. they might not speak the language, like you were talking about so beautifully earlier. but, but they're, supportive at least in that sense and very understanding. I don't know, JC, what have your, what's your experience been?

Jacie: 15:12

Yeah, I would, I am someone who I don't have a lot of relationships, but the ones I have are really deep. So the, the people I have in my life are very like. Deep rooted people, in the sense that. They know me and I know them on a, on a spiritual level, like on a soul level. So I haven't had necessarily a lot of friendships collapse because of SERS or have people not understand or friends specifically not understand because of SERS, but I have had relationship difficulties because of SERS. my, my dad doesn't understand. He doesn't want to understand SIRS. He doesn't understand why I'm so passionate about sharing what I've been going through publicly. One of my SIRS symptoms was suicidal ideation, and I've shared about that, and I think it's important that we share about these things. we experienced whispers so that people know they're not alone and people know that there's hope through this treatment and through this protocol. and he didn't understand that and he felt I was putting myself at risk of never getting a job again because I shared that I had had this experience online. so I have had people just not understand or not willing to understand. but at the end of the day, Melanie, it's like you said, it's maybe those aren't your people and maybe those relationships aren't. Starting from the foundation that you thought they were. And for me, it's been watching a fire clear away the dead wood of my life, right? And those relationships that were no longer serving me. And what is left is just this beautiful forest of people who I love and who love me. And now there's like this new growth from all the new people I've met through the SERS community. And, just having made space for these new relationships.

Melanie Pensak: 16:56

great. I love all the nature metaphor as well. I feel like now that I've gone through the fire, I relate to that as well, where Yeah, the people that have really been able to show up in different ways, whether that's, just checking in, or, offering their support in various different ways, and those people, I, I really feel that they, they care and that they, Love me and support me no matter what the condition is that I'm in. so I agree. I think it clears away and creates the opportunity for making new friends as well. I have my, new serves folks that I connect with and that we can, share inside jokes about the illness with and it does open up that space and it just honoring, there's a lot of grief that can go into letting go of the old friendships. that aren't really serving anymore, but finding new community can really lift you up and carry you through that time for sure.

Barbara: 17:59

Yeah, I think one other layer of that. Is also the relationships when JC mentioned family, my thoughts immediately went to watching my family who I'm genetically related to, therefore, probably have similar issues, and watching them be in denial about what, what they're going through and, and maybe they should eat better. Maybe they should, not, I just know that they're going through things, or they're dealing with maybe some mold issues at their home, or, and they're not taking it as seriously as I know they should, so that, that strain, watching people that are close to you not really buy into the whole SERS thing, that's hard. And not being able to to rescue them or save them in any way. You can't, you can't, you can lead a horse to water, but you can't make a drink. And so I'm hoping that through the process of my own healing that eventually people like that will come around. But that's, that's been a different kind of strain. It's definitely a distance causing one, only maybe because of like self preservation. I take a step back because it just It just sucks to, to watch someone go down that path and be in that place of denial. But I think that is another layer of, strain that can happen with relationships and SERS.

Melanie Pensak: 19:14

Absolutely. I'm so glad that you brought that up. I feel very similarly where my genetics came from somewhere. And, the more I talk about different symptoms and how they show up in people, I wonder if the flags. Go off in their head, or if they will ever go off in their head, I think what's hard about SERS is that it can show up so differently in, in people and, it can show up as fibromyalgia, it can show up as chronic fatigue, it can show up as migraines, it can show up as food issues. And so sometimes it's hard for people to make that those connections, but it is, it is, it can cause a lot of strain. I think one thing that I want to. to maybe touch on. I would be curious to see what both of you would say is how, if somebody is a friend or somebody is a family member of somebody that's going through SERS recovery, how can they best support someone going through SERS recovery? what are some really practical things? Because I know people listening to this podcast are going to be friends and family members, of people going through the recovery process. One thing that comes up for me is asking people, what do you need? Like the most supportive question that somebody has asked me is what do you need? Because we think we know what people need, but everybody actually needs something very different. Maybe it's I need space right now. Maybe it's, I need financial support. let's create some sort of fundraiser. Maybe it's, I need people to come over and clean for me, And so I think that that's a really. Great question that a family member or friend could ask. Do you have any thoughts or anything come to mind that like you wish a friend would ask you or a family member would ask you to be supportive on the path? Yeah,

Jacie: 21:10

I can think of two things. One is whenever I go stay at Barbara's house, it's really nice because she knows that she already knows like all of my chemical sensitivities and she's not going to burn fragranced candles and she'll ask me if I need supplements and stuff like that. So just like having. Someone in my life who just understands that I'm basically this like high maintenance, expensive purse dog that needs a lot of, needs a lot of care is incredible. So I think just, like you said, asking someone what they need or asking how you can accommodate them better and making them not feel like a burden, like just being really, really, approachable in that way, almost like annoyingly. So no, what do you need? be very direct and insist upon them telling you what, what they need in that moment. I think a lot of SERS people, they've, they've been sick for a long time, so they feel like they're a burden to not only their own life, but everyone around them. And so just making them feel like they're not a burden and it would be your pleasure to help accommodate whatever their needs are. And I think the second part of that is just being a really great listener. A lot of people who have SERS. we've tried to express how we're feeling physically, mentally, emotionally, so much, and to so many different people who just don't understand what we're going through, sometimes all we need is someone who, who will just sit and listen

Barbara: 22:29

to us. Yeah, I think this is a hard ask that I'm about to say, but I think, because JC covered two main points so beautifully, I'm not going to add to that, but if you're a partner or, or maybe, it's, it's a, like a parent, like some people have to move back in with their parents, because of the cost of SERS treatment. And also like maybe their, their place wasn't safe. There's a lot of pushback on the cost. Or, or like, oh, do we really need to do that inspection? Do we really need to clean the ducts? Or do we need to look at the HVAC? there's a lot of pushback there. And I, I wish that you don't have to just jump in and accept everything and spend all of the money, but to, to ask, okay, why let's talk about why? what's the science, learn why. The HVAC system is so important and learn what the maintenance, the proper maintenance of a home should be learning those things. that goes a really long way, just being open to understanding, that aspect of it and not just looking at the dollar sign and going, Oh my God, no, no, no, wait, and then shutting down. I know that's really hard for a lot of people. Some people just have a wall up when it comes to expenses, especially home expenses, because of. How big they can be, but, that, yeah, any, testing your home, it's, could be a 200, 300 test. That's a relatively small in the world of SIRS, and even that can get pushed back. And so that's what I would, I would beg people to consider being just a little open about those costs, because, those costs really go back to health, which truly is priceless. But also a lot of those costs can save you so much in the long run, both in time and money when you're talking about treatment.

Melanie Pensak: 24:14

Absolutely. Great points. Both of you. Another thing that's coming up for me is I had a friend make a suggestion to me, about Actually writing out a little letter or a little list of needs, and then giving it to people before they come to your house. or before you have an interaction with them, so that the emotional burden is not put back on the person with the SERS. because I know that in my own experience, there's so much to explain around the illness, and there's always this, is this person really going to believe and buy into everything that I'm sharing? And it can be tiring on a person that's already pretty tired, physically, mentally, emotionally. And this. Friends suggested just like making some sort of pre written letter to send to people about Hey, if you come to my home, like this is my illness, this is a little bit about it. Here's some resources if you want to learn more about it, but I need you to take off your shoes or I need you to shower before you come, or I need you to do, a couple of different things. And then that takes the burden off of the person with the illness to have to verbally repeat that every time. Putting that out there too is something for people who are having SIRS and maybe they're considering having friends over, making something like that so that you don't have to repeat yourself so many times. Yeah, that's great.

Barbara: 25:43

That's a great idea. So I'm curious,

Melanie Pensak: 25:46

what do you both, I don't know who wants to go first here. what do you wish that people in the world knew about SIRS?

Barbara: 25:55

Oh man. I wish they knew it existed. Yeah. Yeah, exactly. Let's start there. That mold is a big deal. That lime is a big deal. these are, yeah, that, that biotoxins are real. yeah, that just that it, that it exists.

Jacie: 26:13

I think that's one part of it. with greater awareness, it's going to make it easier for everyone, right? Not only will building standards improve so that there isn't as much water damage to be exposed to, and then, Melanie, like you were saying, it's not going to be so burdensome to have to explain to people, oh, if you're not coming from a safe environment, I need you to make yourself as safe as possible so I'm not exposed from you. so I think awareness, In that sense is really important'cause it's going to help serves people everywhere. But also for, for serves people most, most people with CSS don't even know they have cs. I feel so lucky that I found out about it at all. It feels like divine intervention. All these like really specific, specific circumstances in my life led to me getting a diagnosis and getting treatment. And I feel very blessed and lucky to have had that experience. But there are so many people suffering who just don't know it's a thing. Don't know that. There's this hope out there for healing, for actual healing, not just symptom management.

Barbara: 27:10

Yeah, I, that I'm, I don't even know what I could add to that. Casey said that perfectly, but yeah, I agreed. I, any of that would be great.

Melanie Pensak: 27:20

It's such a popular answer. I will say that almost every single person I asked that question to says something along the lines of this is real and it exists. And I think that just points to the amount of. doubt that's still out there in the medical community and in the world. And I'm so grateful that we're all, using our voices and our healing journeys to bring more awareness to this so that, more and more people do know that it's real and that it exists.

Barbara: 27:52

Yeah, definitely. And

Melanie Pensak: 27:54

I know you've both had experiences with physicians and I'm curious, what do you wish that non SERS doctors knew about the illness?

Barbara: 28:05

Can we say that it exists again? No.

Melanie Pensak: 28:08

I was just predicting that in my head. That's why I was laughing. You know what? I

Jacie: 28:12

just wish doctors were more open to the patient experience in general because, coming from the carnivore community too, I was seeing a PCP for 10 years. And then, I went in after starting carnivore and she was like, wow, your, all of your blood work looks great. You're not pre diabetic anymore. You've lost a lot of weight. And I told her what I was doing and she was like, Oh, you need to eat. lean meats and more carbs. And I was like, Oh, okay, am I doing a good job or not? Because I'm getting mixed messages here. So I think sometimes doctors are just so used to being in the world of what they learned in medical school and not being open to questioning or being open to the reality of the patient experience. So in a very general sense, I just wish most doctors were more open minded.

Barbara: 28:56

Yeah, and conventional doctors are seeing patients in what, less than 10 minute windows. or if, 15, if you include notes or whatever, they're, they're forced into this system by insurance companies. I can go on and on about how broken the whole system is. they, I, I don't blame them for not knowing more and to just go with what they were taught. However, many years ago when they were going to med school, but, if they can take the time to. To research and keep up on what's actually happening, what new studies are coming out that actually show red meat isn't bad, for example, back to JC's story, even just simple things like that, I think it would, it would go a long way. I personally don't see conventional doctors anymore. Almost ever, unless it's a real conventional problem, like a broken bone, which, knock on wood, I haven't had any, in my life, actually, but, but if, but I always go to someone who's going to look at the holistic full picture of my health, they're going to ask me about, trauma and mental health, in addition to whatever's physically not working with me. that was my main, I'm priority in choosing my SERS practitioner is that she's very, connected to the spiritual and the, and the mental side, just as much, if not more so than the physical side of, of health. So I, I think, that's been my goal and that's how I've adjusted, to avoid because the last time I went to a conventional doctor about my GI issues, specifically my, my biggest issue as far as SERS is concerned. she was like, Oh, here, yeah, you'll take these antibiotics. And I said, are you like, does it matter what I eat? Like you haven't asked me about my diet. I asked her point blank, aren't you going to ask me about food? And she's Oh no, that doesn't matter. I was like, you're a GI doc. This is your specialty is the body system that handles food and you don't care what I eat. She had no clue what I ate at the time. And I was not yet carnivore at the time, but I had dabbled in like Whole30, paleo and all that fun stuff. So I knew nutrition had something to do with this, but yeah, that's, that's been, that's been my experience. Yeah,

Melanie Pensak: 31:10

the doctors are pretty close minded in my experience. I have such a severe medical presentation. I am a pretty complicated case. And so I have to do the dance between the. The holistic and the medical and I had to train my primary care to know what to do with the blood labs and train him on what was actually happening with my illness. I sent him the art and science of SERS textbook. I said, this is what's happening and this is what I have and I need you to get on board. I don't believe he ever read it. but. I think he at least maybe started to believe that something was happening when things weren't getting better. And then they started to get better. He saw that I was changing. but for people who have to be in the conventional system, I think it takes some. work to make it work for you. It's like you have to step out of this that they're going to know what to do and you have to step into it as, okay, I'm going to be my own advocate now and I'm going to tell that doctor what I actually need. So I would have to, I would have like my appointments with my service provider and then go to my PCP and say, okay, hey, these are the labs we can, we need to draw. will insurance cover them? Can we do them? If not, then I would have to, pay for them out of pocket. So it was always this sort of dance between, both of them, to get what I needed. So it's tough. It's really tough. But I agree. I wish that they knew and I wish that they were a little more open minded to work with the service providers because I think a lot of the service providers in my experience, They're open to talking with the, conventional practitioners. It's just, is the conventional practitioner willing to talk to them? Yeah. Yeah, that makes sense. If you could have one magic wish granted, What would you ask to happen within the SERS community? Oh,

Jacie: 33:22

I think it would be for consistency in communicating the protocol. I know for us, we've seen a lot of people come through. The SERS group through other avenues, they might have come to the SERS group from, mold illness or biotoxin on this communities where it's more loosey goosey on the protocols. And some people seem to have a lot of symptom management with that. Some people don't. but what we know, what we've experienced is that the Shoemaker Protocol does work. And so instead of having people waste time and money down these random rabbit holes that may or may not help them, I would just really like to see some consistency and communication so that people aren't wasting their time and money and hope on these, these treatments that aren't actually going to heal

Barbara: 34:08

them. Yeah, and I think to build on that, I do wish there was more, there does seem to be like a line in the sand, like you're either shoemaker or you're not, and, and then, and now, now the two sides, don't talk and don't like help each other at all. Like it's, it's just, to JC's point, I like, I like things that actually work. but I do wish that there was just more, yeah. I wish that that things weren't quite so split up. and even within the shoemaker practitioners, I've, I've gone now to two different practitioners. So I've, I've seen a little bit of different styles there. and they all have like the, the, the comorbidities that they focus on or, or the things that they, they tend to seek out within their, their own clients. they pay more attention to certain aspects. they all have different styles. That In and of itself can be that can be hard for a patient with SERS, especially if you're in the absolute depths of your illness and you're trying to pick a practitioner for the first time and you don't know whether your personality is going to gel well with that personality. I wish there was an easier way to, matchmake the, the process a little bit better so that you are with a doctor that's going to have the right level of understanding and compassion that you need. Or maybe you're more of a fact driven, data driven person and, and you, you can skip the fluff and you can go directly to just the, the blunt facts. I wish that there was a way to just figure out. And, and help people find the practitioner that's best for them, whatever method they're using. Like Tinder, but they're SIRS patients?

Jacie: 35:44

Yes.

Barbara: 35:45

Swipe left, swipe right. Can we invent that? Can we start developing that

Melanie Pensak: 35:48

app? That would be great. Oh, I like that. That's a good idea. Somebody out there, get on that. Free idea. Yep. And then we'll just carry that right into dating with SIRS and finding friends with SIRS. I think that we can find matches in all areas. Practitioners, friends. Yeah, safe housing. Yeah, safe housing. That's a great one too. I love it. Last question for you both. What keeps you hopeful on the day to day? I like

Jacie: 36:16

to reminisce on how far I've come. that's been something that has been really important for my own journey. I think a lot of the time I've shared something on Instagram the other day. It was like, maybe the reason you don't feel you've progressed in life is because You keep raising the bar for what your definition of success is, and I think as we heal, it's like, you're never going to be 100%, right? you're always going to want that little bit more, and so it's easy to forget how far you have come over time, and so if you have journals or pictures or a way to remember, the progress that you have made, I think a really great way to do that is to track your symptoms, is to track your blood work, is to To have those practices in place so that you can look back, the thing that keeps me hopeful is knowing how much my body has healed in such a relatively short period of time. As soon as I gave it the tools it needed to succeed and got out of my own way. And I think that, I think I'll always have this gratitude towards the healing that I've done. And I think a big part of that is that time that I spend remembering how bad it was. Maybe that's a

Barbara: 37:22

little morbid. No, no, it's perfect because my answer is, what keeps me hopeful is Jacie and I'll explain because I definitely move my own goalposts and, and constantly redefine success so that it is always out of reach. And I rarely celebrate wins and I rarely reflect. So having someone in my life, like Jacie who does actively try to do that. Doesn't mean she's, she's not struggling with that too. I know that's been a, a thing that she's had to work on within herself, but, but that, I, that's inspiring to me and a great reminder to me. to remember how far I've come, to remember that, even if it sometimes with, with SERS healing, with trauma healing, with a lot of the, this stuff that we're all working on, you climb one mountain peak and you think, yes, I made it. And then you realize there's another Fricking mountain peak, even taller, right in front of you, It's every single time. And, and so that can get really discouraging, but if you do take a moment to look back and, and celebrate the wins, and then realize that, okay, cool, here's another mountain peak. But I'm here and I can tackle it. Like I'm strong enough to tackle it now. you know that I think reframing some of those, moments. can be really helpful. And of course, also just seeing the other people who have healed, people who are in front of you, so to speak, as far as their healing journey, they've, they've been doing it longer, they've gotten further along, those are also really inspiring to me as well, and that's helpful. That answer

Melanie Pensak: 38:56

really points to the power of friendship and the power of community and I can feel the love between you both. really sweet to have the opportunity to hear about your stories and thank you so much for being here to share your heart and share some of your insights and journey. And thank you again for everything you're doing out in the community to raise awareness and to help patients and people going through the process. And I'd love for you to just share how people can stay in touch with you.

Jacie: 39:30

Yeah, thank you for having us on. Thank you for having this platform where people can share their SERS stories and share more of the lifestyle experience of having SERS. It's definitely something I wish. I had been able to explore and, see the experience of other people before starting my own search journey. So thank you so much for the work that you do. you can find us at thesurgegroup. com. We also have an Instagram where we share graphics and reels to do with, bite sized pieces of SERS information if you're looking for a more accessible entry point. Barbara, I'm sure I'm missing stuff.

Barbara: 40:05

and also the SERS group on YouTube, or, or wherever you listen to podcasts, we have our podcasts that we usually do about weekly and we cover all kinds of fun topics. or lately we've been recapping going to the SERS X conference and that's been a lot of fun. yeah, you can find us on YouTube at the SERS group. but all of that's also at the SERS group. com. So you really didn't actually miss anything, JC. Good job.

Melanie Pensak: 40:30

be sure to check them out and, take it. If you take away anything from this conversation, I hope that it is to, feel brave enough to reach out to somebody and make a SERS friend.

Barbara: 40:41

Yes, definitely. Thank you both. Thank you. Thank you.

Melanie Pensak: 40:51

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.

41:19

Bing.