Melanie Pensak of Meditation for CIRS: Learn about CIRS & her CIRS Journey

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Transcript

Melanie Pensak: 0:15

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. Hey everybody, it's Melanie. I've been encouraged as the first podcast episode to share a little bit more specifically about what CIRS is and what my own experience with CIRS has been like. So the illness is complicated. Do your best to listen carefully because This information may be really helpful for you or for someone that you love. So what is CIRS? CIRS stands for Chronic Inflammatory Response Syndrome. It is a multi system, multi symptom, progressive illness caused by inflammation in the body due to exposure to a biotoxin. Nearly 24 percent of the U. S. population is genetically susceptible to this illness through the presence of the HLADR gene on chromosome 6. So if the U. S. population is approximately 331 million, 24 percent means approximately 80 million. 80 million people are genetically susceptible to this illness in the United States. There is a high chance. You know someone who has CIRS, but you're not aware that you do, and chances are that person doesn't know they have CIRS, because the illness looks like many other illnesses, and the symptom presentation looks different from person to person. multi system, multi symptom. It affects different parts of the body for different people, and the symptoms are varied for different people. So, biotoxin illness has been validated with a couple of randomized controlled trials, and this illness was first identified in 1996 97 by Dr. Richie Shoemaker. The fish in Pocomoke, Maryland, had fisteria and was making people sick. So Dr. Richie Shoemaker is responsible for finding many of the markers that we use today to identify CIRS as an illness. Dr. Richie Shoemaker developed the Shoemaker Protocol, the therapy that CIRS folks follow to help overcome CIRS. What are biotoxins? Biotoxins are tiny living organisms or parts of organisms from mold, fungi, mycotoxins, bacteria, microbial VOCs that live together in water damaged buildings, so this could be in homes, in schools, in places of religious worship, places of entertainment, It's estimated nearly 50 percent of the buildings in the U. S. have water damage. And that study is from around 2011. So imagine when this podcast is being recorded in 2023, what that

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Melanie Pensak: 4:31

would be today. So water damage can be from leaky pipes under sinks, wood exposed to mold used in materials of homes and buildings, Materials dampened from overflowing tubs and toilets which are not dried quickly enough, basement floods, roof leaks, faulty air conditioners, and beyond. Anything that's sitting in water over 48 hours has the potential for this microbial growth. People become sick from breathing in the particles in the air. And people can also become sick from biotoxins from Lyme and tick borne illnesses. from eating fish that have ciguatera and neurotoxins, from swimming in contaminated bodies of water, from cyanobacteria, endotoxins, recluse spider bites, and from viruses, and in my experience, I would suspect from vaccines. No matter what biotoxin triggers the illness, the body's reaction is one of inflammation that cannot be turned off. And this causes varied and progressively debilitating symptoms in the patient. So this gets a little technical. The human body has the innate immune system and the adaptive immune system. in a body with the HLADR gene, the danger material or molecule doesn't get recognized by the adaptive immune system to make antibodies and remove it from the body. A body without these genes would do so. So this is why people and families The mom could be sick, but the father could not be sick, different genetics. One person's body might remove the toxins and another's may not. The body continually makes inflammation, responding to the biotoxin threat in the body of somebody with the HLA DR gene, and they remain stuck in the innate immune system. Inflammation continues to grow and grow, and the biotoxin continues to circulate through the body. This causes breakdown of the many protective barriers in the body, including our precious gut lining and the blood brain barrier. Parts of the brain begin to swell or shrink, and this is shown through neuroquant studies. Some bodies go into freeze and protect mode, and the gene expression in mitochondria turns off or down, causing hypometabolism, which can present like ME CFS, otherwise known as ME CFS. Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and now even called SEID, Systemic Exertion Intolerance Disease. to various levels of severity. to Marcon's, which is a multiple antibiotic resistant coagulase negative staph infection deep in the nasal sinuses, and nearly every organ can be impacted. Now over time, the body slowly becomes sicker. And even if someone with CIRS leaves the water damage building, the particles on clothes, fabrics, porous materials can continue to make them ill. They must be removed. And the biotoxins continue to circulate in the body unless removed with the proper therapies and binders. So what are some of these symptoms that people might experience? To varied degrees and severity, muscle aches. mood swings, temperature instability, sweats, especially night sweats, headaches, decreased ability to concentrate and to acquire new knowledge, static shocks, frequent urination, dehydration that can't be quenched, shortness of breath, chronically tired, rapid weight gain that you can't lose, irritability, cough, watery diarrhea, weakness, cramping, unusual pain, sensitivity to light, red eyes, Bringing in the years, people report many different random symptoms. And it's important to point out, if you yourself are having some of these symptoms, are you able to relate it to a building? For example, did your headache start after you started working at that job? Did you start having frequent urination after starting night classes at the community college? Do you experience... migraines or feel short of breath in church? Are you having sensitivity to light and red eyes after being in that movie theater? So these may seem like they are simple symptoms, but they can be indicators if we get really curious of something more involved. So patients may hear that their doctor suspects illnesses. like MS, EDS, POTS, ME, CF, fibromyalgia, Alzheimer's, dementia, Parkinson's, but oftentimes the doctors can't find numbers and data to match up with the suspected illnesses. And patients accept this as their fate, not knowing that the earlier cause or current cause could be from a biotoxin from their environment or from any of the other possibilities that I mentioned previously. So, patients can be blown off, they can be gaslit, and they can be referred for mental illnesses when their doctor can't prove through blood labs that there's something wrong with them. But the patient intuitively knows something, is it right? Traditional blood markers and tests are completed, and often there are no abnormalities, even though the health continues to decline. So, oftentimes, Western docs think they've done their job. and the patient still doesn't have a reason for the root cause of their symptoms. I know for me, I did not see data evidence of CIRS of the illness until the specific CIRS blood tests were drawn. I failed a BCS test and had environmental data to back up what was happening. For me, a very early red flag that I CIRS and not a simple gut imbalance was that No traditional medical or functional medical remedies were working to repair my progressively worsening gut symptoms, bloating, gas, constipation, SIBO that wouldn't resolve, food sensitivities, malabsorption, nutrient deficiency, diarrhea, food elimination diets didn't work, supplements caused more problems, and everyone was unsure why I wasn't tolerating food. It was suspected it was in my head, which was insulting considering I was somebody that found great joy in cooking and eating out and eating foods from many different backgrounds. My hope, my wish, is that people begin to consider their environment as a possible cause of illness. I hope that through education, through this podcast, they may start to recognize earlier that their seemingly unrelated symptoms are in fact an illness or progressing into CIRS. Looking back now, my symptoms started almost eight years ago. If I had known of CIRS, if my Western docs had heard of CIRS. If the traditional doctors and practitioners I was working with had heard of cs, it was talked about by name in integrative and functional health circles, perhaps I wouldn't have been so severely impacted and I would've probably saved thousands of dollars. My care in 2022 alone was over$24,000 out of pocket, so I can't imagine the cost counting up multiple health practitioners and supplements over now eight years. If you're not getting better doing what you're doing, or a loved one is not getting better doing what they're doing, could their environment or could a biotoxin be at the root of their symptoms? So, this may sound complex. I don't know how well I did explaining that, but I want you to know that this is just really the surface level of this illness. When CIRS begins, There is a cascade effect in the body that is incredibly complex, and people need a CIRS provider and practitioner to help them get the proper testing done and to guide them through the path of recovery. Now, there is a path to recovery, which is promising, and people do get better, but it is a journey. It is a physical, spiritual, emotional and mental journey. And that's where this podcast really comes from. It comes from my experiences on the CIRS recovery path and really seeing and feeling like I wanted to connect with others and have deep heartfelt conversations about what they were going through. Stories can be so healing for the heart, even if they are stories of Becoming. Some of the stories don't have an ending yet because people are still on the path, but I really craved and wanted to hear what are you thinking? How are you feeling? How are you navigating the intricate details that are required for success to overcome CIRS? I myself got diagnosed with CIRS. in spring of 2022. And when I'm recording this in September 2023, I am on the last step of the recovery protocol. It has been one of the most difficult and challenging experiences of my life. It's hard to put into words the journey that I've been on, but I will certainly try. I want to give some of the specifics of what led up to my CIRS diagnosis in the hopes that other people may hear it and they might start to connect the dots for themselves in their own health journeys. I did not know that I held this genetic predisposition until I went through the CIRS diagnostic process. So that was April of 2022. My symptoms, as I mentioned earlier, were predominantly digestive and started seven to eight years ago now, and I suspect, looking back now, that the place that I was living in or working in had water damage. There were a couple reasons. I think it might have been the apartment. One being, there were a lot of ants. And there was a lot of moisture in the bathroom, like the bathroom needed a lot of re caulking at different times. I suspect there was something going on in the wall between my bathroom and kitchen where the insects kept appearing and it kept needed to be re caulked and cleaned. And that apartment is where I started to develop food sensitivities and SIBO and where I just started to feel like something wasn't quite right, couldn't put my finger on it, but I was very functional from a standpoint. I was walking, I was working, living a very full life. However, the food piece was challenging because as you start to eliminate foods and try different remedies. It limits your ability to eat out and socialize and date, and so I was starting to get restrictive around my eating, trying to figure out what would potentially move the needle for me, and the different functional providers, and the acupuncture, and the detox protocols all made me feel, worse and made me feel even sicker, which now knowing what I know is a red flag, those toxins I was kicking up in my system were probably recirculating and not being removed because of my genetics. It's nobody's fault. They didn't know at the time. However, it's a little heartbreaking looking back. and seeing how much I was trying to help myself and knowing that I was ultimately harming myself in the process. I would say that I learned to manage my gut difficulties and was still living quite a full life, but every once in a while I would have periods where I felt really tired or unwell, and that would go away, it would never really last. Before the COVID 19 pandemic, I had decided I was going to go on a sabbatical and take six months off to participate in a variety of meditation retreats and spiritual. adventures, also working in regenerative agriculture in different ways. I was planning a one month silent retreat. Spirit Rock in California. I was going to Iceland to Work and live on an organic farm in the Eastern fjords and a part of the country that I adore and teach meditation there. It was also planning to spend some time in Scotland planting trees with some organizations there and spending time at my teacher's retreat center in France. So I had the six months sabbatical planned and had basically moved. All of my minimal belongings into a storage unit in Los Angeles area and headed up to Spirit Rock for my one month silent retreat to start off the sabbatical. And so I went into the silent meditation retreat and two weeks into the retreat, there were signs all over the campus, yellow signs, mandatory meeting today in the main hall. And it was really shocking because this doesn't happen on retreats. It felt alarming. My intuition told me something was up and I automatically assumed something relating to politics. Maybe we had gone to war or the president had been assassinated or something. It felt serious. And so I went to this meeting with a heavy heart and The retreat staff at Spirit Rock had to tell us that during the first two weeks of our retreat, the world had basically shut down. So COVID 19 was not globally widespread at that point that we entered into the retreat. And so we had been in retreat. really separate from the rest of the world, quiet, no knowledge of what's going on. And the world had completely changed and shut down in that time. And they were worried that the people on retreat wouldn't be able to go anywhere if we stayed for the whole month. So when you're in retreat for two weeks, it's an interesting experience because Your meals are taken care of. You're on a schedule. Things are simple and quiet. You're meditating. You're spending time in nature. It's very relaxed and peaceful in many ways, except for maybe your mind. And I was having quite a blissful experience at that point, two weeks in. And so to be slammed with this news, Was a shock to the nervous system and even though many meditation practitioners practice for knowing that difficulties are coming, it was. a threat to safety. And I want to mark this because I think traumatic events and threats to safety are common for people who are experiencing CIRS. There are different traumatic events that seem to happen before people end up in the cascade. so there was that threat to safety. World is shutting down. Where are you going to go? Because basically. I wasn't going to be able to go to Scotland and Iceland and France during the pandemic. And all of my belongings were in storage in Los Angeles. And so I had a couple of suitcases and nowhere to live during a pandemic. I remember now looking back, I think I was in a freeze response and like a trauma response because I felt really numb and disassociated with the news. At first, I eventually was able to make plans and find places to live, which was fine. But It was really disorienting in many ways, so that's the first threat to safety there that I'll mention. And I was able to pivot and do some really great regenerative land work and to participate in some meditation teaching outside in nature. I ended up stewarding land in the Sacramento area, and then I ended up on an organic farm, which was. Really an ideal location for many reasons. Being outside, being in community with other people, but being safe during the pandemic. However, I didn't realize that that building I moved into on the farm was water damaged until a panel fell off the wall covered in mold and realized that the air conditioner in that building I had been living in, I was most likely breathing in ectinomycetes and who knows what other kind of microbial growth. The farm was beautiful. But I was swimming in a lake. I was living near chickens and chicken poop and I was exposed to a lot of toxins in that environment. I didn't realize with my genetics that that would be a not ideal place to live. So I'm swimming in a pond hanging out with the chickens and the cows. I'm around. Decaying matter a lot. So there are lots of possibilities for endotoxins and toxins in that environment. I was having the time of my life. I was enjoying every second of delivering produce and learning about the endotoxins. ways farms work and spending copious amounts of time outside in nature and that people were wonderful. It was nobody's fault that I was having exposures there because nobody knew and I didn't know my own genetics, but it was not the healthiest place for me to be. And I was having symptoms there. I was having sore wrists, which I blamed on all the computer time. I thought I'm developing carpal tunnel, I'm getting older, and I couldn't quench my thirst. I was always drinking and I blamed it on the high heat in the California weather. And what happened to that summer is that the temperatures. Got really strong and there were power outages and then there were fires. I point this out because this is the second threat to safety, so it was very traumatic for me to be living in a place that was having fires pop up regularly at night when there was lightning, there was no rain because of the drought and the lightning would cause fires in the middle of the night. So I was on Twitter checking fire feed, and a couple times ready to evacuate and that. was really foreign to me and scary to me, quite honestly. So I was definitely in a fearful state and living in a water damaged building. When I decided to leave, I moved to a location outside of California and needed to wrap my head around everything that was going on and take a couple months just to decide where I was going to live next and what my next move was going to be. And I unknowingly moved into a water damaged building. At this point, I had no idea what was, right? And I moved into a cute little place with a yellow door and bright purple lavender bushes out front and yellow roses. It couldn't have been more ideal for me from a visual perspective. And I'm inside all winter. writing a book and breathing in air that wasn't healthy for me. And I kept feeling weaker, but you make up excuses. Oh, I'm not exercising as much. It's the pandemic. Oh, it's this. Oh, it's that. And I really didn't have an environmental illness on my radar. I had the second COVID vaccine in April of 2021. And within several months, I was very sick. And so it's difficult to pinpoint exactly what the cause of my was. But I will say the rapid decline in my physical abilities happened after that second vaccine. Living in a water damage building, probably already had and my immune system was struggling. I am not against vaccines. I am not speaking for or against in any way. I think it's a personal decision for people to make, but it is clear to me in my experience that My decline in my functional abilities, walking and being able to function cognitively rapidly changed after that second vaccine. Is that what put me into full fledged CIRS? Did I have CIRS before the vaccine? It's really hard to know because I don't have the blood labs, right? It took me a year of investigating and exploring what was going on in my body to figure out that I had CIRS and to get to a physician that was qualified to work with me in the medically complex state that I was in at that point. At my sickest, I was in a wheelchair. I couldn't work. I was pretty much bed bound. I was irritable. I was emotional and did not recognize myself at all. I didn't realize that I was in that water damage building and moved out, as I said, for a year after the second COVID vaccine. So that was a lot of time in a water damage building, not knowing it. And eventually, serendipitous steps led me to Shoemaker and the Shoemaker Protocol and my position. And I am so grateful that I was able to work with Dr. Andrew Heyman to get me. on track and get me on the road to recovery. My story is still becoming, it is complicated. Think about living with potentially all of that time, many parts of the body have been impacted. A lot of my gut has been impacted and over time it feels like my gallbladder and my liver are struggling and there is brain changes that have happened because of this illness. And so. that impacts the body's ability to function like a person typically would. And now, I want to emphasize I've made a lot of progress. I've made really strong gains and I'm still. Experiencing physical symptoms and physical limitations from the damage to my brain and body. So this journey has been really hard, and it's been difficult because There's a lot of unknown still. The biotoxin world is still developing. There is still research being done, thank goodness, on what these different toxins are and how we can create environments to live in, to heal in. A lot of this information is evolving and complex and difficult for people to understand, and it's not recognized yet in the ICD 10. So this illness, is not getting financially supported by insurance companies. And a lot of people believe that molded illness is not a true illness. There's still that line of thinking out there in the Western medical paradigm. The amount of gaslighting and medical trauma that I went through is significant. It's going to take years to unpack that. And I say this because I know many others are going through it too. And I say this, don't give up, follow your intuition, really listen to yourself. If you believe that there is something going on, you got to keep going because I have not given up and I didn't give up. I nodded my head. I learned to take in the information that the Western medical system was telling me, and then would continue to pursue and dig to find what the root cause of my issues were. At my sickest, I thought I was going to have to go into assisted living at 39, because I could barely lift the arms over my head. And I'm somebody that used to hike for miles in the mountains and a very excited entrepreneur and creative person who lived a really full life. And so it was shocking to see that all change so abruptly. I'm so grateful that I've had. Support from really wise people, doctors and spiritual teachers and friends along the way, my meditation practice, my mindfulness practice has been a blessing. It's been able to help me see when my mind's playing tricks on me, when my emotions need some attention, when I need to offer myself some self compassion and love. This journey asks so much of people. You first have to give up a lot of your physical belongings. You have to clean things. You have to give up your job, your hobbies, your loves. You have to give up and grieve the changes in your abilities. There's a huge financial burden. There is the having to explain yourself to friends and family on what's going on and trying to educate them, getting them caught up on what it is. There's dealing with the friends and family that don't believe you, the friends that disappear. So while it's been a difficult journey, I hope to give people some hope to be a voice. for the Shoemaker Protocol and biotoxin illness and to encourage people to believe that this illness is real and that you can make progress. I've come a long way. I've come from a pretty severe state and now I am working part time again and feeling creative and communicating with people. I'm not fully healed yet, but I still have a lot of hope that I will get there. It's important to have hope and seeing the numbers, the data, the labs improve really keeps me going and also staying connected to other people on the path helps to keep me going, staying connected to my family and friends and spiritual practices keeps me going. So I hope that if you're listening and experiencing SIRS that you can hear the hope and hear the belief that I have in this process. It's been interesting. I've been mostly isolated for many years now, partly because I was so sick, and then partly because I am trying to stay in healthy environments to heal during my most vulnerable periods of recovery. And when you're In isolation for a while, you start to let go of and remove a lot of the clutter in your life because you're just with you a lot of the time. And so, many of my physical belongings were affected by biotoxins, so they are gone, long gone. And then, You know, different relationships that weren't meant to be in my life have started to fizzle away. Different work and jobs and people have started to disappear that aren't really serving anymore. Things have become more simple and clear. And there's also been this development of creativity, a deepening of my creativity. I've always been creative, but a deepening of creativity as I've been with myself and seen my mental habits that are not helpful and help to heal my heart when I've seen what's getting in the way of really feeling love for myself and others. It's opened up a creative space. So that's where partly this podcast comes from, it just emerged, it was sort of given to me, it's something that the idea arose in a moment of silence and has developed from there. So it's been a fun, intuitive, creative project. And. You know, it's funny when I was a little girl, I used to like going to school. I liked learning, but my favorite part of school was just talking to people. I used to get in trouble a lot for talking to my friends in school. So it kind of makes me laugh because now carry on full circle, talking to people, hearing about their lives. I really love to understand what people think and what their experiences emotionally and how they navigate the complexities of life. I find that to be fascinating because we are so resilient. There's something, a belief or a deep knowing that many of the people that I've talked to have that they'll make improvements and they will heal and they keep going. So I hope you'll pick that up from the stories and conversations. and I hope that you'll feel inspired to keep going. My work in the world now with SIRS is multi layered. I am providing support to people who think they have SIRS and want to get started with their blood labs and diagnostic processes and get matched with a physician. I am helping people navigate the day to day responsibilities of SIRS. I'm a shoemaker proficiency provider diplomat, which means I continue to study and have passed an exam that shows that I have a deeper understanding of the illness. I feel committed to supporting people on the path who want to develop wisdom and compassion and love as they go through the process of recovery by really paying attention to their mental habits and their emotional experience by learning to love themselves deeper. I think that's one of the true dare I say gifts of the illness is a deepening of wisdom and compassion and love. If you open to it and cultivate it. And so I offer meditation classes and meditations and mind body support. To people on the path and hold space for the grief and the emotions that come up. If you'd like to be in touch with me, you can go to my website and learn more about everything that I offer, but the biggest thing is I really hope that these conversations nurture your heart and your soul and help you to understand the illness and the lifestyle of the people going through serves. The more people that listen and hear and speak of it, the more common it will be, and the less damage people with SERS will experience in the diagnostic process, people will become identified earlier, which can save money, which can save the heart, and which can save the mental health of a lot of folks. So that is the short version of my story, if you can believe it, it is even more complex than that, but I will not bore you with all those details. I did want to let you know, though, that I have been through the deep SERS trenches, and I am starting to come out the other side. And it's important for you to know the lens from which I'm interviewing and talking to people from. So thank you for listening, and thank you for being here. And I look forward to being on this journey with you.

Cheri: 38:43

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.

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Bing.