Podcasts about medicaltrauma

Play Episode Listen Later Jun 23, 2022 25:11

Jill wraps up the podcast! I started in 2016 interviewing my kids and how they were affected by Tuberous Sclerosis Complex. It was absolutely divine inspiration from the start and branched out shortly after to interviewing community members and other professionals who worked with those affected. From there, I explored many different topics, providing information and resources in interview form, all with relevance to the individuas and/or parent/caregivers affected by a chronic illness like TSC. Pushing the boundaries of what was deemed "safe and effective" by our medical system, I continued to put info out there based on my own lived experience as a parent/caregiver living and dealing with what I'd come to discover is CPTSD if you want to use a label. It was my vision and still is that all "remedies" for improving the quality of life of all involved in the wheels of chronic illness, particularly one such as TSC which affects all the vital body organs, will be an option for all. Why should we hold back the river when there are so many speaking about how their lives have been impacted by sharing their truths, sharing what's worked for them and what potentially might help another ease the very real and almost daily traumas of attempting to live with an open heart and navigate our inverted systems of care.Many of these podcasts go against the grain of what people are comfortable hearing. There are always positive takeaways but there are some heavy heavy experiences that people are walking through and talking about and must be given voice. I think through honest conversation, and taking full responsibility for one's reactions to other's sharing from their most painful, heart-wrenching moments, we can begin to hear each other once again at least long enough to realize, we're all having vastly different experiences yet we all long to be here now, safe, loved, whole, home.Thanks for tuning in and being here there and everywhere. It's been the pleasure of a lifetime to have the opportunity to create and share this work. Love Jill

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TSC Talks! Final podcast~Wrapping it Up & Thanks

Play Episode Listen Later Jun 23, 2022 25:11

Jill wraps up the podcast! I started in 2016 interviewing my kids and how they were affected by Tuberous Sclerosis Complex. It was absolutely divine inspiration from the start and branched out shortly after to interviewing community members and other professionals who worked with those affected. From there, I explored many different topics, providing information and resources in interview form, all with relevance to the individuas and/or parent/caregivers affected by a chronic illness like TSC. Pushing the boundaries of what was deemed "safe and effective" by our medical system, I continued to put info out there based on my own lived experience as a parent/caregiver living and dealing with what I'd come to discover is CPTSD if you want to use a label. It was my vision and still is that all "remedies" for improving the quality of life of all involved in the wheels of chronic illness, particularly one such as TSC which affects all the vital body organs, will be an option for all. Why should we hold back the river when there are so many speaking about how their lives have been impacted by sharing their truths, sharing what's worked for them and what potentially might help another ease the very real and almost daily traumas of attempting to live with an open heart and navigate our inverted systems of care. Many of these podcasts go against the grain of what people are comfortable hearing. There are always positive takeaways but there are some heavy heavy experiences that people are walking through and talking about and must be given voice. I think through honest conversation, and taking full responsibility for one's reactions to other's sharing from their most painful, heart-wrenching moments, we can begin to hear each other once again at least long enough to realize, we're all having vastly different experiences yet we all long to be here now, safe, loved, whole, home. Thanks for tuning in and being here there and everywhere. It's been the pleasure of a lifetime to have the opportunity to create and share this work. Love Jill

Ep 613: Why Are Doctors Fat Phobic?

Play Episode Listen Later Feb 22, 2022 60:24

How do you feel when you think about doctors visits? Are you filled with dread, excitement, anxiety? Join us as Guru Shabd talks about her recent experience, and how we can take care of ourselves and our bodies even when “authorities” are telling us the opposite. Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa (@grrshubz)

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Season 2 Episode 14 Shannon: When Medical Trauma Rudely Interrupts

SISU Journey

Play Episode Listen Later Sep 14, 2021 48:34

In this episode of the SISU Journey podcast, Shannon Collins talks about the stress of dealing with the repercussions of something out of their control. Everything was fine until one day, they unexpectedly needed to undergo brain surgery. What was it like afterward? How did they start to get used to this new normal? Stay tuned! Here are the things to expect in this episode: Being in a situation where they can't trust their body to do what it needs to do. Everyone else's reaction to the surgery is its own trauma. The long-term impact of brain surgery on their daily life. What were some of the major shifts they did? Putting up boundaries because they didn't like how people were treating them. How they learned to no longer be afraid of being honest with their feelings and values. And more! About Shannon Collins: Pronouns: they/them Shannon Collins has been aiming to capture joy as resistance for 12 years as the owner of Shannon Collins Photography. They connect clients with affirming vendors and advocate for safer, more diverse, inclusive, and accessible industry standards. In the past year, Shannon came out publicly as nonbinary, queer, and disabled. Shannon recently founded Youthphoria, a project dedicated to celebrating and photographing trans, nonbinary, and gender-nonconforming youth in the Philadelphia area at no cost. Shannon volunteers for The Trevor Project every week as a crisis counselor. Shannon lives in the Philadelphia suburbs with their partner, two children, chinchilla, dachshund, and 38 patient houseplants. Connect with Shannon! Website: https://www.shannoncollins.com/ Youthphoria: https://www.youthphoria.org/ The Trevor Project: https://www.thetrevorproject.org/ -- This episode talks about medical trauma and uses a few sassy words. Please take care while listening. Thank you for listening to SISU Journey! Please share with a friend, and rate/review and follow on Apple Podcasts, if possible. It really helps spread our message of resilience! We are building a community here at SISU Journey, a network of healers, many of whom you have already heard from on this program. Head over to https://sisujourney.com to sign up for the community waitlist, and you will be the first to be notified as soon as we open the doors. Theme music is Syrian Rue, written and performed by the Mood Doculators. For more of their music and to listen free, visit mooddocs.com Follow us on https://www.instagram.com/sisujourney/ Join the conversation on Facebook: https://www.facebook.com/groups/1331225027271627

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Lauren Berberich: Healing Trauma with EMDR

Girls With Guts

Play Episode Listen Later Aug 31, 2021 47:50

In this episode, Nicole and Alanna are joined by Lauren Berberich, a mental health professional in Alaska, about Eye Movement Desensitization and Reprocessing (EMDR). We discuss how this form of therapy can help people with issues as "small" as getting over feelings of low self-esteem, to healing "massive" issues such as PTSD and the severe physical/emotional symptoms that come along with a intensely triggering experience. Listen as Lauren discusses how EMDR therapy works, how many sessions are typically needed, and her real-life examples of cases in which this form of therapy has worked (note: Not all cases are human!) Also, Alanna brainstorms on some examples she feels this therapy could be helpful with! Do you have any more to add? As you listen through this episode, you can actually hear the excitement and intrigue from Nicole and Alanna – who now both want to try this form of therapy to help them process their chronic illness and medical trauma. Who can relate?! Want to join in on the conversation? Follow us on social media! Instagram: @girlswithgutspodcast Twitter: @girlswithgutspod Facebook: www.facebook.com/girlswithgutspodcast Alanna's Instagram: @alannamartella Nicole's Instagram: @thenikkidee Lauren's Socials: Instagram: @flourishtherapyak Website: https://www.flourishtherapy.llc Some Suggested EMDR Resources! Books: "Getting Past Your Past" by Dr. Francine Shapiro Find a Specialist: www.emdria.org More Specialist Help: www.psychologytoday.com/us/therapists (It's important to note, there are certification levels to EMDR. The first level of training makes you a specialist. The second level, which requires further education and consultation, is Certified. The highest level of someone who is the most qualified to practice EMDR is referred to as a Master. It's important to know for when you're seeking out different levels of help!) To learn more about the podcast and the hosts, visit our website at https://www.girlswithgutspodcast.com.

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EP 36 - Medical Trauma & Healing the Triggers

Witchcraft & Wellness

Play Episode Listen Later Aug 10, 2021 34:31

In this episode we dive into Medical trauma and how to heal the triggers you might have when going in to a doctor. I share some of my medical trauma and something I realized about myself when going to a doctor recently. These moments, although hard, is vital to help you understand what healing still needs to be done. It gives you direction on where in your shadow you need to go next. To book your appointment and help you eliminate these triggers in your life, click below: https://bosswitchescovenappointments.as.me/?appointmentType=21710448 Interested in a past life regression to see who you've been in the past and what toxic cycles you're still repeating? Click below: https://bosswitchescovenappointments.as.me/?appointmentType=21710475 Peace, Love, & High Vibes Witches

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My scars only tell a small part of my story

The Brie Pod

Play Episode Listen Later Jun 16, 2021 27:03

"Your illness does not define you. Your strength and courage does"Have you ever felt like you knew something was wrong with health, but everyone else including the "professionals" told you otherwise? In this episode, I share my endo story. I talk about the medical trauma I faced as well as the imposter syndrome that crept in. On this journey for answers and healing, I did not get everything resolved but I learned along the way that it is still important to celebrate every win, even if it seems small. I am not sure what will come next for my endo story, but I do know that many women in the endo community have had 5-9+ surgeries in their lifetime. The sad part about the lack of research is that at this point endo doesn't have a cure. My mission is to help by sharing my story + symptoms to help spread awareness. A 10-year wait for any diagnosis is unacceptable!#endothepain

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Episode 504: Managing Challenge

Play Episode Listen Later Apr 26, 2021 64:08

This month we pushed ourselves out of our boxes and became a whole production company! Was it worth it? If you do something that’s difficult what will you discover about yourself? Join us as we talk about how we negotiate boundaries and needs, manage challenges in order to achieve something really really cool. Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Episode 503: Challenging Fear & Anxiety

Play Episode Listen Later Apr 19, 2021 68:52

How are you handling the fear of the world opening up and the fear associated with racism and living in this country right now? Are you ready to be seen after surviving over a year in the pandemic? Join us as we talk about how we challenge our fears, and give insight into goals we have set to crawl out of our comfort zones. Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz Questions we ask at the end: https://shop.theskindeep.com

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Episode 502: Inspire Vs Empower

Play Episode Listen Later Apr 12, 2021 58:07

This week we have been interviewing incredible women about concern trolling and social media. Join us as we talk about advocacy, the medical industry and fat phobia, and how we are looking at navigating the world post lockdown. Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Ep 501: Life, Right?

Play Episode Listen Later Apr 3, 2021 63:25

It’s catch up time and we're back with a new season! Join us a we discuss what have we been up to you and how are we dealing with the world, then ask each other some hilarious questions! Card questions can be found at: https://shop.theskindeep.com/ Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Ep 414: Maybe it's Retrograde

Play Episode Listen Later Feb 22, 2021 65:37

Season 4 Finale! Mercury retrograde, communication, and lessons we have learned. Join us as we talk about cycles, personality profiles, and how we are always working to better ourselves. Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Ep 413: Opinion Buffet

Play Episode Listen Later Feb 15, 2021 67:42

Let's talk about a lot of different things, the Covid Vaccine, the BLM movement, racism, the lack of acknowledgment in media about current events, and communication with blood family vs found family. Join us as we get down and dirty with a smorgasbord opinion buffet of ideas! Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Ep 412: Medical System Trauma

Play Episode Listen Later Feb 8, 2021 72:52

What happens when you're sick and the person who is supposed to help you doesn't believe you or worse, ridicules you to your face? This situation happens regularly to people in larger bodies. Join us as we discuss our experiences with this, and ways to take care of ourselves despite the challenges of our terrible medical system. Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Ep 411: Confidence!

Play Episode Listen Later Feb 1, 2021 63:01

Confidence! What does it mean? How does one build confidence and how does it change over time? Join us as we talk about our journeys to the people we are now. Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Ep 410: Hey Jealousy

Play Episode Listen Later Jan 25, 2021 58:12

What makes us jealous, and does that make us bad people? How can we defeat the green eyed monster, or should we at all? join us as we ask ourselves, "Is our jealousy trying to tell us something?" Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Ep 409: Sexiness & Hypocrisy

Play Episode Listen Later Jan 18, 2021 63:35

CW: MENTIONS OF SEXUAL ASSAULT IN THIS EPISODE Why is there such a double standard for men and women’s sexuality? How are we supposed to balance being the right kind of sexy, but only on society’s terms, and how come woman get in trouble for their sexiness so much more than men? Why does showing a woman's nipple get your arrested or in social media jail? Join us as we talk about sexuality, agency, and consent! Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Episode 406: New Years Disillusion

Play Episode Listen Later Dec 28, 2020 54:52

What is your relationship with New Years resolutions, goal setting, and making intentions? Do you think they help or hurt you more. Is someone profiting from your resolution (a gym, a diet company, a clothing company?) We invite you to do something different this year, if resolutions aren’t working for you. Feel free to email your responses to yesandbodypolitics@gmail.com Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Episode 405: Social Media Trolls

Play Episode Listen Later Dec 21, 2020 58:25

Concern trolling & social media, what is it, why does it keep happening, and what can you do about it? We discuss why people feel entitled to tell others what is and is not ok for their bodies. What would you do if you didn’t have to worry about someone having an unwelcome and hurtful opinion? Let's discuss and as always feel free to email your responses to yesandbodypolitics@gmail.com Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Episode 404: HairOsphere & All The Hair

Play Episode Listen Later Dec 14, 2020 61:26

Welcome to the hairOsphere! Let's talk about all the hair! Why is it so important to maintain certain standards or styles, and why does it feel so bad to be different? Why do we experience fat shaming or pressure to have certain body hair or hair style? Have you been told you can't have a style or feel like you can’t pull off something because you’re fat? Let's talk. Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick (@curvykimchi), Guru Shabd Khalsa @grrshubz

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Episode 403: Diet Culture & Bad Doctors

Play Episode Listen Later Dec 7, 2020 70:05

Do you know what diet culture is and how it affects you? Can we even agree on it? How do we know when to stand up for yourself? We get personal talking about diet culture, disordered eating, and medical trauma especially when you're fat. Follow us on Instagram: @yesandbodypolitics Producers: Tresla Friedrick, Guru Shabd Khalsa

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TSC Talks! Love over Fear~A Mother's Story. Sherri Tutkus, RN, BSN, Founder & CEO of Green Nurse Group

Play Episode Listen Later Mar 29, 2020 43:33

In this episode, my guest Sherri Tutkus, RN, BSN, Founder & CEO of Green Nurse Group, came on the podcast to share a powerful and inspiring mother son story that follows the timeline from receiving a diagnosis at birth of her son Nicholas with Branchio-Oculo-Facial Syndrome through current day. Sherri gives one of the most powerful illustrations over the course of the episode, of a mother's love, courage, compassion, resilience and tenacity that I've ever heard, and is a fantastic example of holding onto presumption of competence as a guiding light, against all odds. Sherri Tutkus is the founder and CEO of GreenNurse Group, Nursing Director at Irie Bliss Wellness and host of GreenNurse on the Go Radio Show. Sherri is a cannabis nurse, patient and advocate. She earned her Bachelors in Science and Nursing from Boston College. She is highly skilled Registered Nurse with 30 years’ practical experience in various departments within the hospital and home setting. She is utilizing her expert nursing skills as a medical center specialist, clinical nurse liaison and educator to bridge the gap between patients and the cannabis community. Sherri has been educating and implementing holistic integrative healing modalities within her practice for over 20 years. She educates on the endocannabinoid system and the safe utilization of cannabis at dispensaries, hospitals, clinics, patients homes and she regularly does pop up events, seminars and expos. Sherri is an international speaker and she has contributed to the writing of the first cannabis nursing textbook with her cannabis nurse colleagues that will be available in nursing schools across the country. Sherri is a member of the American Cannabis Nurses Association and founding member of The Cannabis Nurses Network and was nominated as one of two nurses for “Health Professional of the Year” for the 2020 New England Cannabis Convention. Sherri brings passion and purpose to her work teaching bio-psycho-social-spiritual healing using cannabis as a tool. In the first part of this podcast, Sherri discusses her own background and connection to cannabinoid medicine. The tools she learned in her own journey enabled Sherri to cope with frequent and ongoing surgeries, procedures, treatments for her son Nicholas and advocate vociferously on his behalf. "When I'm presenting to people, I use myself as a case study. Because basically, prior to me getting ill, I had a history of migraine headaches, ADHD, and anxiety, that was managed with traditional medicine. I was functioning, I was healthy, single mother of three, child with a disability that we're going to talk about, but knowing that I had migraine headaches and at ADHD symptoms should have been a clear indicator that I had an Endocannabinoid deficiency. So everything that we do or don't do in our lives as far as health and wellness affects this neurotransmitter signaling system called the endocannabinoid system, and that the job of that system is to bring balance." She goes on to explain, "By the end before I discovered cannabis. I was on over 16 pharmaceuticals. So, as I've learned over time, if you're taking more than 10 pharmaceuticals, there's 100% chance of having an adverse drug reaction. Polypharmacy. I fit into that polypharmacy category. I am not anti pharma. However, what is really essential for people to understand when they are being prescribed pharmaceuticals is to ask those critical questions and to look at what side effects there are to look at the blackbox warning Okay, how many people have died? You know, what are the side effects, what are the adverse effects, you need to have knowledge knowledge is power. The other thing that people People don't realize is that a lot of pharmaceuticals have a drug nutrient depletion" She goes on to explain, " I have have a history of Polycystic Ovarian disease which is very interesting. And that yeah, that is considered to be a clinical Endocannabinoid deficiency diagnoses as well. So I had issues with fertility all along. ... And then my third pregnancy... it's interesting, you know I gained all kinds of weight and wasn't happy and I started changing my lifestyle when the babies came. And all of a sudden my reproductive system started to auto regulate. I was using specific supplements and nutrition. I changed my diet, I became vegan, I did a raw diet, and all of a sudden, I'm a fertile Myrtle. And before we know it, I'm pregnant with my third" From here, Sherri goes on to discuss the birth of Nicholas and the immediate realization that he had multiple issues of which she was not aware of up until the moment of his birth. She explained to me in writing prior to the recording of this episode, the following, "All of my births were traumatic experiences however this pregnancy was the best and the easiest. I had an uneventful healthy pregnancy. I broke my water 6 weeks early and when my first boy was born he was not breathing and they had to resuscitate him and over the course of my first postpartum days I learned that my son had a rare genetic disorder called Branchio-Oculo Facial Syndrome." BOFS is inherited in an autosomal dominant manner. Each child of an individual with BOFS has a 50% change of inheriting the variant. Nick’s dad carried the gene and at the time of diagnoses the gene had not been identified. She discusses the realization of impact, "you have these craniofacial anomalies that required over 15 surgeries, but the things that they said about mental retardation was not true. The surgical stuff they were able to do . I engaged upon a journey with him that I would do anything for him. It was kind of like, I just got to do this. And so he became my full time job. " I asked Sherri the question, "How did you do it? How did you handle this huge weight of reality repeatedly?" She explained, "I got back to really the basics of self care and being present and grounded. I had already have a lot of those spiritual tools. My son opened up the door to the unseen worlds for me, which is a whole other show. But literally, I kind of felt like and I know it sounds crazy, but I'm sure other mothers can agree or associate or identify.... that I just felt a really strong connection with him and being able to understand what his needs were even before he could communicate." She goes on to add, "it gets back to what I can and cannot control you know, even if I can't control my emotions, even if I'm out of control, like hysterical or anxiety-ridden or sad, I still can have the ability to control what I'm doing and not doing in my life. And so what I knew to be true was in order for me to be the best version of myself, I needed to do everything that I could to take care of myself. And that included my mental health." She goes on to say, "But he's a true miracle. I gave him every opportunity. And he basically showed me through his own actions and his kindness and compassion and his grit and his ability. The kid had so much resilience and he wanted to heal, you know, he's not mentally retarded, he got set up with the Deaf Services as we found out later, he doesn't have sensory neural hearing loss, he has a bone conduction hearing loss. And so he basically told me one day Mom, I want to smile with the rest of the kids. And I was like, oh, of course you do. How do I make that happen? And boy, that was a scary journey. We literally embarked upon the journey of having my boy get a smile." "The amazing craniofacial team at Boston Children's Hospital did an experimental surgery that is called facial reanimation. And basically they didn't know. They said it would evolve over time, would the nerve take and would it connect and would it work? So here we are... I don't know here we are going. Through 16 hours of surgery 10 days in the hospital, not knowing if this is going to work or not. That was another faith based thing. Honestly, you know, it's all you have, and then literally one morning when I was waking him up for school, all of a sudden he sits up in bed. He smiles. So he's really he's come a long way. He's 14 years old now. When he was in sixth grade, he said, I want to go to public school. Oh my god, how is he going to be able to go to public school? So I was like, Okay, let's try to make it happen. And we embarked on the journey of integrating him into the public system." Bringing us to current day, Sherri explains, "You know, he is thriving. He's finishing up the eighth grade this year. And his freshman year, next year in high school, he will be in the public school. He still has an IEP, he's going to be in all honors and advanced honors classes is number one subject Spanish. And one of the other thing is that, you know, oftentimes as parents, we may feel sorry for our kid and you may feel bad. He doesn't feel sorry for himself. He doesn't feel bad." A final quote, "So what can I control? I try to control other people. And we can't control anyone. We can't. And that's the part that was the biggest lesson that I learned. And he taught me that, he taught me where my power lies and where it doesn't lie and how to choose and pick my battles and what's important and what's not important. And in the grand scheme of life, when you can pull back from that and see, what am I doing to be the best version of myself, so I can help my child thrive?" Sherri's links: Green Nurse Group: https://www.greennursegroup.com/ Facebook: https://www.facebook.com/GreenNurseSherri Instagram: https://www.instagram.com/sherri_tutkus/, https://www.instagram.com/greennursegroup/ Twitter: https://twitter.com/Green_Nurses LinkedIn: https://www.linkedin.com/in/sherri-tutkus-rn-bsn-912b7776/

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TSC Talks! Love over Fear~A Mother's Story. Sherri Tutkus, RN, BSN, Founder & CEO of Green Nurse Group

Play Episode Listen Later Mar 29, 2020 43:33

In this episode, my guest Sherri Tutkus, RN, BSN, Founder & CEO of Green Nurse Group, came on the podcast to share a powerful and inspiring mother son story that follows the timeline from receiving a diagnosis at birth of her son Nicholas with Branchio-Oculo-Facial Syndrome through current day. Sherri gives one of the most powerful illustrations over the course of the episode, of a mother's love, courage, compassion, resilience and tenacity that I've ever heard, and is a fantastic example of holding onto presumption of competence as a guiding light, against all odds.Sherri Tutkus is the founder and CEO of GreenNurse Group, Nursing Director at Irie Bliss Wellness and host of GreenNurse on the Go Radio Show. Sherri is a cannabis nurse, patient and advocate. She earned her Bachelors in Science and Nursing from Boston College. She is highly skilled Registered Nurse with 30 years’ practical experience in various departments within the hospital and home setting. She is utilizing her expert nursing skills as a medical center specialist, clinical nurse liaison and educator to bridge the gap between patients and the cannabis community. Sherri has been educating and implementing holistic integrative healing modalities within her practice for over 20 years. She educates on the endocannabinoid system and the safe utilization of cannabis at dispensaries, hospitals, clinics, patients homes and she regularly does pop up events, seminars and expos. Sherri is an international speaker and she has contributed to the writing of the first cannabis nursing textbook with her cannabis nurse colleagues that will be available in nursing schools across the country. Sherri is a member of the American Cannabis Nurses Association and founding member of The Cannabis Nurses Network and was nominated as one of two nurses for “Health Professional of the Year” for the 2020 New England Cannabis Convention. Sherri brings passion and purpose to her work teaching bio-psycho-social-spiritual healing using cannabis as a tool. In the first part of this podcast, Sherri discusses her own background and connection to cannabinoid medicine. The tools she learned in her own journey enabled Sherri to cope with frequent and ongoing surgeries, procedures, treatments for her son Nicholas and advocate vociferously on his behalf. "When I'm presenting to people, I use myself as a case study. Because basically, prior to me getting ill, I had a history of migraine headaches, ADHD, and anxiety, that was managed with traditional medicine. I was functioning, I was healthy, single mother of three, child with a disability that we're going to talk about, but knowing that I had migraine headaches and at ADHD symptoms should have been a clear indicator that I had an Endocannabinoid deficiency. So everything that we do or don't do in our lives as far as health and wellness affects this neurotransmitter signaling system called the endocannabinoid system, and that the job of that system is to bring balance."She goes on to explain, "By the end before I discovered cannabis. I was on over 16 pharmaceuticals. So, as I've learned over time, if you're taking more than 10 pharmaceuticals, there's 100% chance of having an adverse drug reaction. Polypharmacy. I fit into that polypharmacy category. I am not anti pharma. However, what is really essential for people to understand when they are being prescribed pharmaceuticals is to ask those critical questions and to look at what side effects there are to look at the blackbox warning Okay, how many people have died? You know, what are the side effects, what are the adverse effects, you need to have knowledge knowledge is power. The other thing that people People don't realize is that a lot of pharmaceuticals have a drug nutrient depletion" She goes on to explain, " I have have a history of Polycystic Ovarian disease which is very interesting. And that yeah, that is considered to be a clinical Endocannabinoid deficiency diagnoses as well. So I had issues with fertility all along. ... And then my third pregnancy... it's interesting, you know I gained all kinds of weight and wasn't happy and I started changing my lifestyle when the babies came. And all of a sudden my reproductive system started to auto regulate. I was using specific supplements and nutrition. I changed my diet, I became vegan, I did a raw diet, and all of a sudden, I'm a fertile Myrtle. And before we know it, I'm pregnant with my third" From here, Sherri goes on to discuss the birth of Nicholas and the immediate realization that he had multiple issues of which she was not aware of up until the moment of his birth. She explained to me in writing prior to the recording of this episode, the following, "All of my births were traumatic experiences however this pregnancy was the best and the easiest. I had an uneventful healthy pregnancy. I broke my water 6 weeks early and when my first boy was born he was not breathing and they had to resuscitate him and over the course of my first postpartum days I learned that my son had a rare genetic disorder called Branchio-Oculo Facial Syndrome."BOFS is inherited in an autosomal dominant manner. Each child of an individual with BOFS has a 50% change of inheriting the variant. Nick’s dad carried the gene and at the time of diagnoses the gene had not been identified.She discusses the realization of impact, "you have these craniofacial anomalies that required over 15 surgeries, but the things that they said about mental retardation was not true. The surgical stuff they were able to do . I engaged upon a journey with him that I would do anything for him. It was kind of like, I just got to do this. And so he became my full time job. "I asked Sherri the question, "How did you do it? How did you handle this huge weight of reality repeatedly?" She explained, "I got back to really the basics of self care and being present and grounded. I had already have a lot of those spiritual tools. My son opened up the door to the unseen worlds for me, which is a whole other show. But literally, I kind of felt like and I know it sounds crazy, but I'm sure other mothers can agree or associate or identify.... that I just felt a really strong connection with him and being able to understand what his needs were even before he could communicate."She goes on to add, "it gets back to what I can and cannot control you know, even if I can't control my emotions, even if I'm out of control, like hysterical or anxiety-ridden or sad, I still can have the ability to control what I'm doing and not doing in my life. And so what I knew to be true was in order for me to be the best version of myself, I needed to do everything that I could to take care of myself. And that included my mental health."She goes on to say, "But he's a true miracle. I gave him every opportunity. And he basically showed me through his own actions and his kindness and compassion and his grit and his ability. The kid had so much resilience and he wanted to heal, you know, he's not mentally retarded, he got set up with the Deaf Services as we found out later, he doesn't have sensory neural hearing loss, he has a bone conduction hearing loss. And so he basically told me one day Mom, I want to smile with the rest of the kids. And I was like, oh, of course you do. How do I make that happen? And boy, that was a scary journey. We literally embarked upon the journey of having my boy get a smile." "The amazing craniofacial team at Boston Children's Hospital did an experimental surgery that is called facial reanimation. And basically they didn't know. They said it would evolve over time, would the nerve take and would it connect and would it work? So here we are... I don't know here we are going. Through 16 hours of surgery 10 days in the hospital, not knowing if this is going to work or not. That was another faith based thing. Honestly, you know, it's all you have, and then literally one morning when I was waking him up for school, all of a sudden he sits up in bed. He smiles. So he's really he's come a long way. He's 14 years old now. When he was in sixth grade, he said, I want to go to public school. Oh my god, how is he going to be able to go to public school? So I was like, Okay, let's try to make it happen. And we embarked on the journey of integrating him into the public system."Bringing us to current day, Sherri explains, "You know, he is thriving. He's finishing up the eighth grade this year. And his freshman year, next year in high school, he will be in the public school. He still has an IEP, he's going to be in all honors and advanced honors classes is number one subject Spanish. And one of the other thing is that, you know, oftentimes as parents, we may feel sorry for our kid and you may feel bad. He doesn't feel sorry for himself. He doesn't feel bad." A final quote, "So what can I control? I try to control other people. And we can't control anyone. We can't. And that's the part that was the biggest lesson that I learned. And he taught me that, he taught me where my power lies and where it doesn't lie and how to choose and pick my battles and what's important and what's not important. And in the grand scheme of life, when you can pull back from that and see, what am I doing to be the best version of myself, so I can help my child thrive?"Sherri's links: Green Nurse Group: https://www.greennursegroup.com/Facebook: https://www.facebook.com/GreenNurseSherriInstagram: https://www.instagram.com/sherri_tutkus/, https://www.instagram.com/greennursegroup/Twitter: https://twitter.com/Green_NursesLinkedIn: https://www.linkedin.com/in/sherri-tutkus-rn-bsn-912b7776/

TSC Talks! Calming the Chaos with Brooke Alisha~TSC/TAND Advocate, Adult/Parent Living with TSC, Hair Stylist, Thriver!

Play Episode Listen Later Mar 1, 2020 51:13

I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult Living with TSC, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope.Diagnosed with Tuberous Sclerosis Complex (TSC is a condition that causes benign tumors to grow in different organs of the body) at the age of 18, Brooke gives us a picture, “I was very active. I was a cheerleader. I was in a precision ice skating team. I was very active in my church. I was in a traveling singing group. We had so many things. So for me, my life was.. always on the go and involved in something, a part of something and suddenly, I was on Darvocet and it literally brought me to my knees. I was in the middle of hair school. I had just started after I graduated. And I missed three months. I had to take medical leave because I couldn't get up. I was afraid to hurt my kidneys and the stent and that whole thing and then on top of it being on that medication. That was the start of everything really for me.”She talks of the utter devastation that followed post-diagnosis, “you looked at Google, you know, or Web MD or something. And it was like, awful. And I'm like, how can my life go from this to this? How am I supposed to (go on) and that it just made it worse”?After moving in with her boyfriend and withdrawing, there was more challenging news, “And so when I went to go see about the cysts on my ovaries, I actually found out I was two months pregnant with my daughter. So I did have this on my ovaries, but they're like, um, you're pregnant, and we're going to put you on Prozac because we don't know if you'll handle the baby or if you'll keep it or anything”To make things more challenging, she now had doctors weighing in, “She told me she advised an abortion and I wasn't okay with that. It wasn't how I grew up personally. And I thought, there's a reason I'm having her. So, I'm going to just have her and I'm going to get through it. And if I lose her, then it's meant to be I had to live with myself personally.” Her baby daughter started having infantile spasms at 4 months and diagnosed with TSC. She gives us a look at the inner experience of these circumstances and more challenges, “I guess I was so young, you know, I was scared to death of what was to come and she had just got diagnosed with Tuberous sclerosis complex, she has the seizures and they started to get more intense. And they were up to about 10 to 12 times a day, we started to have to digest that. Then I found out I was pregnant with my son, so it was a lot.”Listening to Brooke and reflecting on my own experience, “I can relate to some of that, you know, I was getting pregnant and finding out at while I had other kids with TSC, and you know, I think back on those times that I don't remember the details. It's like talking to you, I just kind of remembered that craziness. You know, it was always like kind of living through at the moment and getting through the day and, you know, putting out brush fires one thing after the other, so I don't know if it was like that for you, but I didn't have a lot of like time to really reflect on what was happening and how I was. It was just so much action-reaction.”Brooke shares more of her experience with her daughter, “she had brain surgery, a lot of people know the intensity of that, it's a six-month thing. To get tested and all of this stuff done and, you know, it kind of all becomes a blur and then you spend about a month in the hospital because they’ve got to do two surgeries. And we did get social security disability income for that month that I was off, but it was exhausting. I had a son at home. She wasn't going to the bathroom by herself. They told me about the social regression, they removed her right frontal lobe of the brain, all the executive decision making”She also discusses waking up to an understanding of TAND, Tuberous Sclerosis Associated Neuropsychiatric Condition, both personally and with her daughter. 80-90% of individuals with a diagnosis of TSC will have some degree of TAND, manifesting in a myriad of different ways, encompassing the entire mental health diagnostic umbrella!“And you just fix it and you figure it out. But you know, for the longest time, everything would defeat me. Because, you know, for me, 80% of people with TSC have a mental illness, TAND is something I didn't even know what it was, and I feel like it's not talked about enough. It's not expressed enough. It's not shown to families like okay your child might have TSC but look out for TAND, they need to be pre warned for this because you have no idea it will come hit you like a bus.”Here’s an excruciating narrative outlining a TAND incident, “It seems like with these medications, so for her anti-psychotics make her psychotic. And we were like afraid to drive home. We were hoping a cop saw us and said let me take her from you. I have never been that mom that wishes anything on my children ever, ever ever in my life. I know I talked previously about not dreaming of being that mother or that Betty Crocker person, but I definitely am a person that when I have something, I go all out and I go all in. If I'm going to take care of something, I'm going to take care of it the way it needs to be taken care of. How do you take care of that? I didn't know how to take care of that situation. That moment. everybody's lives are in danger. My son was being choked from the back. It was very traumatic.”So clearly, Brooke is a survivor, with resilience like no other. She narrates example after example of circumstances that are unimaginable and yet she continues to rise. “And you know, for the longest time I lived as that victim like …victim, victim victim and I decided I wasn't going to live there anymore. And once you decide that you must be at a really big place where you're like, you know, I'm ready. Because you're going to get tested and you're going to get tried, and it's going to try to break you, but you have to just rise up really. But you have to be at that place, and I can't tell you how to get there other than feeding your mind with happy things and good things. I started working out. So I started to try to do things that would help my mental health I went seek counseling. I just I started to really like being a hairstylist too, you’re also a therapist. So, you need to have an out. I needed a healthy out for sure.”Brooke uses premium nutrition, and continues to talk with her doctors, and this system has worked for her, “a premium lifestyle plan to help individuals experience and reach peak physical and mental levels” and has great results. She continues to promote this product as a side business to supplement her work as a hairstylist/beautician” and focuses on helping people feel beautiful inside and out. Having the opportunity to give her clients a little bit more in terms of offering a product she has had success with and believes in has been a wonderful way of infusing her work with her own lived experience and positive energy.This episode is chock full of inspiration and hope despite multiple and ongoing challenges. I’ll leave you with this final quote, and encourage you to listen and share this incredible testimony to the power of the human spirit, faith and deep passion and love for her family, friends, committed to doing her best to push the needle of knowledge, education, and support for those living with TSC forward daily!“I mean, there's been lots of like little miracles, you know, like as you go on, like, Oh, she can read now. And for me, my tumors went from four and a half centimeters down to nothing. So yes, so that's been amazing, but just the miracle of being 36 now and being told at 30 I'd be in a wheelchair like that's a miracle. And when people see me and do that stuff, I want them to know that it's never too late. You still have a life to live!” Bravo Brooke!Brooke’s links:Instagram: https://www.instagram.com/_brookealisha_/ Facebook: https://www.facebook.com/brookey21Twitter: @BrookeAlisha Adult Regional Coordinator-FB group: https://www.facebook.com/TsAllianceOfOhio/TS Alliance Regional Coordinators: https://www.tsalliance.org/individuals-families/adults/adult-regional-coordinators/Brook’s hair services: https://www.facebook.com/brookesbliss13hair/https://www.facebook.com/thecolourpalettesalon/Thrive/Le-Vel: https://brooke2330.le-vel.com/

google mental health chaos ohio trauma ptsd advocates thrive medical parent adult autism diagnosed calming neurology quality of life epilepsy webmd hairstylists rare diseases prozac thriver betty crocker tsc polypharmacy tand tuberous medicaltrauma darvocet ts alliance tsc talks

TSC Talks! Calming the Chaos with Brooke Alisha~TSC/TAND Advocate, Adult/Parent Living with TSC, Hair Stylist, Thriver!

Play Episode Listen Later Mar 1, 2020 51:13

I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult Living with TSC, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope. Diagnosed with Tuberous Sclerosis Complex (TSC is a condition that causes benign tumors to grow in different organs of the body) at the age of 18, Brooke gives us a picture, “I was very active. I was a cheerleader. I was in a precision ice skating team. I was very active in my church. I was in a traveling singing group. We had so many things. So for me, my life was.. always on the go and involved in something, a part of something and suddenly, I was on Darvocet and it literally brought me to my knees. I was in the middle of hair school. I had just started after I graduated. And I missed three months. I had to take medical leave because I couldn't get up. I was afraid to hurt my kidneys and the stent and that whole thing and then on top of it being on that medication. That was the start of everything really for me.” She talks of the utter devastation that followed post-diagnosis, “you looked at Google, you know, or Web MD or something. And it was like, awful. And I'm like, how can my life go from this to this? How am I supposed to (go on) and that it just made it worse”? After moving in with her boyfriend and withdrawing, there was more challenging news, “And so when I went to go see about the cysts on my ovaries, I actually found out I was two months pregnant with my daughter. So I did have this on my ovaries, but they're like, um, you're pregnant, and we're going to put you on Prozac because we don't know if you'll handle the baby or if you'll keep it or anything” To make things more challenging, she now had doctors weighing in, “She told me she advised an abortion and I wasn't okay with that. It wasn't how I grew up personally. And I thought, there's a reason I'm having her. So, I'm going to just have her and I'm going to get through it. And if I lose her, then it's meant to be I had to live with myself personally.” Her baby daughter started having infantile spasms at 4 months and diagnosed with TSC. She gives us a look at the inner experience of these circumstances and more challenges, “I guess I was so young, you know, I was scared to death of what was to come and she had just got diagnosed with Tuberous sclerosis complex, she has the seizures and they started to get more intense. And they were up to about 10 to 12 times a day, we started to have to digest that. Then I found out I was pregnant with my son, so it was a lot.” Listening to Brooke and reflecting on my own experience, “I can relate to some of that, you know, I was getting pregnant and finding out at while I had other kids with TSC, and you know, I think back on those times that I don't remember the details. It's like talking to you, I just kind of remembered that craziness. You know, it was always like kind of living through at the moment and getting through the day and, you know, putting out brush fires one thing after the other, so I don't know if it was like that for you, but I didn't have a lot of like time to really reflect on what was happening and how I was. It was just so much action-reaction.” Brooke shares more of her experience with her daughter, “she had brain surgery, a lot of people know the intensity of that, it's a six-month thing. To get tested and all of this stuff done and, you know, it kind of all becomes a blur and then you spend about a month in the hospital because they’ve got to do two surgeries. And we did get social security disability income for that month that I was off, but it was exhausting. I had a son at home. She wasn't going to the bathroom by herself. They told me about the social regression, they removed her right frontal lobe of the brain, all the executive decision making” She also discusses waking up to an understanding of TAND, Tuberous Sclerosis Associated Neuropsychiatric Condition, both personally and with her daughter. 80-90% of individuals with a diagnosis of TSC will have some degree of TAND, manifesting in a myriad of different ways, encompassing the entire mental health diagnostic umbrella! “And you just fix it and you figure it out. But you know, for the longest time, everything would defeat me. Because, you know, for me, 80% of people with TSC have a mental illness, TAND is something I didn't even know what it was, and I feel like it's not talked about enough. It's not expressed enough. It's not shown to families like okay your child might have TSC but look out for TAND, they need to be pre warned for this because you have no idea it will come hit you like a bus.” Here’s an excruciating narrative outlining a TAND incident, “It seems like with these medications, so for her anti-psychotics make her psychotic. And we were like afraid to drive home. We were hoping a cop saw us and said let me take her from you. I have never been that mom that wishes anything on my children ever, ever ever in my life. I know I talked previously about not dreaming of being that mother or that Betty Crocker person, but I definitely am a person that when I have something, I go all out and I go all in. If I'm going to take care of something, I'm going to take care of it the way it needs to be taken care of. How do you take care of that? I didn't know how to take care of that situation. That moment. everybody's lives are in danger. My son was being choked from the back. It was very traumatic.” So clearly, Brooke is a survivor, with resilience like no other. She narrates example after example of circumstances that are unimaginable and yet she continues to rise. “And you know, for the longest time I lived as that victim like …victim, victim victim and I decided I wasn't going to live there anymore. And once you decide that you must be at a really big place where you're like, you know, I'm ready. Because you're going to get tested and you're going to get tried, and it's going to try to break you, but you have to just rise up really. But you have to be at that place, and I can't tell you how to get there other than feeding your mind with happy things and good things. I started working out. So I started to try to do things that would help my mental health I went seek counseling. I just I started to really like being a hairstylist too, you’re also a therapist. So, you need to have an out. I needed a healthy out for sure.” Brooke uses premium nutrition, and continues to talk with her doctors, and this system has worked for her, “a premium lifestyle plan to help individuals experience and reach peak physical and mental levels” and has great results. She continues to promote this product as a side business to supplement her work as a hairstylist/beautician” and focuses on helping people feel beautiful inside and out. Having the opportunity to give her clients a little bit more in terms of offering a product she has had success with and believes in has been a wonderful way of infusing her work with her own lived experience and positive energy. This episode is chock full of inspiration and hope despite multiple and ongoing challenges. I’ll leave you with this final quote, and encourage you to listen and share this incredible testimony to the power of the human spirit, faith and deep passion and love for her family, friends, committed to doing her best to push the needle of knowledge, education, and support for those living with TSC forward daily! “I mean, there's been lots of like little miracles, you know, like as you go on, like, Oh, she can read now. And for me, my tumors went from four and a half centimeters down to nothing. So yes, so that's been amazing, but just the miracle of being 36 now and being told at 30 I'd be in a wheelchair like that's a miracle. And when people see me and do that stuff, I want them to know that it's never too late. You still have a life to live!” Bravo Brooke! Brooke’s links: Instagram: https://www.instagram.com/_brookealisha_/ Facebook: https://www.facebook.com/brookey21 Twitter: @BrookeAlisha Adult Regional Coordinator-FB group: https://www.facebook.com/TsAllianceOfOhio/ TS Alliance Regional Coordinators: https://www.tsalliance.org/individuals-families/adults/adult-regional-coordinators/ Brook’s hair services: https://www.facebook.com/brookesbliss13hair/ https://www.facebook.com/thecolourpalettesalon/ Thrive/Le-Vel: https://brooke2330.le-vel.com/

TSC Talks! Strong and Steady ~ Shelly Meitzler! Mom of Three, 2 with TSC, Community Programs Manager, East ~ TS Alliance

Play Episode Listen Later Sep 30, 2019 72:27

Shelly Meitzler is an amazing, inspiring individual who's life took a challenging turn when she received a diagnosis of TSC in her oldest daughter in August 2001. Starting out in the ER with her seizing baby, Shelly and her husband had to weather the false accusations of shaken baby syndrome by hospital staff before receiving an official diagnosis. From here, she mentions that life as she knew it, was forever changed. Again in 2014, she received another TSC diagnosis in her young son. We discuss the intricate challenges of having 2 individuals affected by TSC, and the varying impact due to the increase in understanding, better treatments, and knowledge in the space of time between diagnosis of her oldest daughter and younger son. She also has another daughter who is not affected by TSC. Shelly shares her unfiltered experience dealing with the intensity of managing the needs of her children & juggling a career, and how this impacted her mental health. She took a leap of faith, leave her former career so she'd be able to devote more time to her family and TSC case management. "In January 2017, Shelly joined the team on as National Walks Coordinator; in September 2017, she joined the staff full time. Shelly has been involved with the TS Alliance for the past decade, including serving as both Community Alliance Chair and Step Forward to Cure TSC Chair in Delaware/Lehigh Valley. Last year, she delivered an inspirational speech at the TS Alliance Congressional Briefing on Capitol Hill chronicling her journey as a TSC mom to Ashlin and Mason. She is grateful to have an extended, supportive family that has helped navigate the journey of TSC and allowed her to be involved on various levels in the community. Shelly’s story has provided hope as ongoing TSC research has offered new insight over the last decade and solidified her determination to continue to advocate, educate, and raise vital research dollars for all those impacted by TSC. In her free time, she enjoys spending time with family and friends, laughing, enjoying life, and the occasional hockey game with her husband, Matt." (tsalliance.org) There is not much that rattles this powerful advocate who above all else is devoted to her family, friends and work at the TS Alliance, improving the quality of life of those affected and working to discover a cure. In her own words; "I'm spontaneous, fun, love to be around people, love to make me people laugh. Nothing compares to being a MOM....love my kids more than anything. And will give everything but UP, to find a cure for Tuberous Sclerosis for Ashlin, Mason, and all those affected with TS!" Keep on keeping on Shelly! And thanks for the inspiration. Shelly's links: https://www.tsalliance.org/about-us/our-team/https://www.facebook.com/shelly.richards.313https://cdmrp.army.mil/cwg/stories/2017/shelly_meitzler_profilehttps://www.linkedin.com › shelly-meitzler-054877160https://twitter.com/momof2withtschttps://www.readingeagle.com/life/article/wyomissing-mom-a-tireless-advocate-for-her-childrenhttps://www.youtube.com/watch?v=V9IvFxonu6M

relationships starting mental health er pennsylvania self care mom east ptsd autism advocacy capitol hill steady special needs ts epilepsy step forward seizures tsc community programs programs manager epilepsy awareness ashlin medicaltrauma ts alliance tsc talks

TSC Talks! Strong and Steady ~ Shelly Meitzler! Mom of Three, 2 with TSC, Community Programs Manager, East ~ TS Alliance

Play Episode Listen Later Sep 30, 2019 72:27

Shelly Meitzler is an amazing, inspiring individual who's life took a challenging turn when she received a diagnosis of TSC in her oldest daughter in August 2001. Starting out in the ER with her seizing baby, Shelly and her husband had to weather the false accusations of shaken baby syndrome by hospital staff before receiving an official diagnosis. From here, she mentions that life as she knew it, was forever changed. Again in 2014, she received another TSC diagnosis in her young son. We discuss the intricate challenges of having 2 individuals affected by TSC, and the varying impact due to the increase in understanding, better treatments, and knowledge in the space of time between diagnosis of her oldest daughter and younger son. She also has another daughter who is not affected by TSC. Shelly shares her unfiltered experience dealing with the intensity of managing the needs of her children & juggling a career, and how this impacted her mental health. She took a leap of faith, leave her former career so she'd be able to devote more time to her family and TSC case management. "In January 2017, Shelly joined the team on as National Walks Coordinator; in September 2017, she joined the staff full time. Shelly has been involved with the TS Alliance for the past decade, including serving as both Community Alliance Chair and Step Forward to Cure TSC Chair in Delaware/Lehigh Valley. Last year, she delivered an inspirational speech at the TS Alliance Congressional Briefing on Capitol Hill chronicling her journey as a TSC mom to Ashlin and Mason. She is grateful to have an extended, supportive family that has helped navigate the journey of TSC and allowed her to be involved on various levels in the community. Shelly’s story has provided hope as ongoing TSC research has offered new insight over the last decade and solidified her determination to continue to advocate, educate, and raise vital research dollars for all those impacted by TSC. In her free time, she enjoys spending time with family and friends, laughing, enjoying life, and the occasional hockey game with her husband, Matt." (tsalliance.org) There is not much that rattles this powerful advocate who above all else is devoted to her family, friends and work at the TS Alliance, improving the quality of life of those affected and working to discover a cure. In her own words; "I'm spontaneous, fun, love to be around people, love to make me people laugh. Nothing compares to being a MOM....love my kids more than anything. And will give everything but UP, to find a cure for Tuberous Sclerosis for Ashlin, Mason, and all those affected with TS!" Keep on keeping on Shelly! And thanks for the inspiration. Shelly's links: https://www.tsalliance.org/about-us/our-team/ https://www.facebook.com/shelly.richards.313 https://cdmrp.army.mil/cwg/stories/2017/shelly_meitzler_profile https://www.linkedin.com › shelly-meitzler-054877160 https://twitter.com/momof2withtsc https://www.readingeagle.com/life/article/wyomissing-mom-a-tireless-advocate-for-her-children https://www.youtube.com/watch?v=V9IvFxonu6M

TSC Talks! Part 1; Are You Listening? Getting Real with Cecilia Pratt, TSC Case Manager & Mom

Play Episode Listen Later Jul 22, 2019 38:52

Cecilia Pratt, reached out via Facebook to share her lived experience of a TSC diagnosis in her son and former husband. She clearly depicts how it felt to receive this heavy diagnosis download in a dermatologists office, based on skin symptoms and delivered with minimal compassion and little information, back in 2005. From here they found a TS Clinic in CA , but again Cecilia was not given the answers she needed about managing TSC and was extremely discouraged. Moving from CA to Baltimore MD, she was finally able to find a clinic and team that was able to offer hope at the Kennedy Kriger Institute. In Part 1 Cecilia gives us a moving account of the inner experience of a mother continually swimming upstream and trying to stay afloat with little support while managing some of the fiercest manifestations TSC can dish out. Intractable seizures, extreme behavior challenges, and IEP non-compliance litigation are just some of the struggles she outlines over the course of these episodes. Cecilia refuses to allow these tidal waves of TSC management keep her down and her forthright accounts of her lived experience are both painful and inspiring. These episodes are powerful, particularly if you've ever felt frustrated with getting support and solid information, struggled with relationship and family misunderstanding and felt alone and isolated. Thanks, Cecilia for your willingness to share from some of your most vulnerable moments to give voice to what many of us have felt as we attempt to maintain a quality of life while dealing with the constant demands of TSC care and management.

family mental health moving parenting adhd behavior autism advocacy special needs pratt getting real epilepsy iep seizures rare diseases family support case managers baltimore md tsc intractable medicaltrauma tsc talks tuberoussclerosis

TSC Talks! Part 1; Are You Listening? Getting Real with Cecilia Pratt, TSC Case Manager & Mom

Play Episode Listen Later Jul 22, 2019 38:52

TSC Talks! Trauma 101-A Preview; For Parents of Medically Complex Kids-with Caroline Clyborne, LPC

Play Episode Listen Later Jun 20, 2019 51:03

Caroline Clyborne, LPC gives us the low down on her upcoming webinar, "Trauma 101-For Parents of Medically Complex Kids" on June 25, 2019. Previously on TSC Talks, Episode 27, Caroline gave us an excellent explanation of the different types of trauma, shock trauma & developmental trauma, and how this is relevant to TSC. In this episode, Caroline gives listeners a review of what trauma is, the various and unpredictable ways we can find ourselves dealing with trauma in TSC, and why it's important for parent/caregivers & anyone dealing with the sort of unrelenting nature of TSC related events to tune in. She gives some D.Y.I coping skills for navigating how to be as self-regulated and resilient as possible regardless of what's going on with one's child medically. Quoting Caroline, "If we are going to talk about self-care and the parent, we're not just talking about going to take a bubble bath. We're talking about how when there is a stressful situation, do parents have the ability in their current situation to manage the distress and then can discharge the anxiety of the situation after the stressful situation has passed?" This is a true learning experience for all of us and after listening, you'll be even more motivated to attend!

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TSC Talks! Trauma 101-A Preview; For Parents of Medically Complex Kids-with Caroline Clyborne, LPC