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Sarc Fighter: Living with Sarcoidosis and other rare diseases
Bonus Episode of the FSR Sarc Fighter podcast. In this bonus episode of the FSR Sarc Fighter podcast -- a reminder of the fantastic progress that has been made when it comes to making it possible for people to participate in clinical trials. Thanks to the tireless work of the team at the Foundation for Sarcoidosis Research and the support of Mallinckrodt Pharmaceuticals and Boehringer-Ingelheim, it is now much easier to say "Yes" if you want to participate. Thanks to their work, participation is now covered under FMLA - meaning you can take time off from work to go to the doctor or the clinic without fear of losing your job. This is a huge win for researchers and all of us in the rare disease community. Listen also as Sarc fighter Karen Colemen tells us how sarcoidosis has slowed her dancing. Show notes: News Release on protection for clinical trial participants: https://www.globenewswire.com/news-release/2024/11/16/2982368/0/en/Foundation-for-Sarcoidosis-Research-FSR-receives-confirmation-from-the-Department-of-Labor-DOL-ensuring-patient-access-to-FMLA-for-participation-in-clinical-trials.html Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
# TEMA EL SARCÓFAGO DE LA REVOLUCIÓN# RELATO DE
Nadie duda de que Galicia es la tierra mágica por excelencia. Todas sus leyendas confluyen en la tumba del apóstol Santiago. Y no es por casualidad: nos cuenta el investigador Carlos Fernández que desde hace eones de tiempo existen tumbas y sarcófagos con leyenda y misteriosos en Galicia.
Intentamos arrojar un poco de luz sobre el misterio del sarcófago de Micerinos que viajaba a bordo del navío Beatrice, hundido frente a las costas de Cartagena en el año 1838. Nos acompaña en esta aventura el doctor en historia y submarinista David Munuera.
Nessa live, vamos explorar a discografia do Sarcófago, revisitando o impacto de cada álbum: desde a brutalidade de I.N.R.I. (1987), passando pela evolução sonora de Rotting (1989) e The Laws of Scourge (1991), até as experimentações extremas de Hate (1994) e Crust (2000). Venha para o debate e descubra como esses discos definiram o metal extremo no Brasil e no mundo! ******************************************** Contato, sugestões e parcerias: canaltupfs@gmail.com Instagram: @canal_tomaruma SEJA MEMBRO DO CLUBE TUPFS E TENHA ACESSO A UMA SÉRIE DE VANTAGENS! Você pode escolher um dos planos abaixo: HEADBANGER (R$ 1,99 por mês) Acesso antecipado aos vídeos novos do canal, seu nome divulgado durante os vídeos em agradecimento e outros conteúdos exclusivos! Além disso, terá um selo de fidelidade ao lado do seu nome sempre que deixar um comentário e emojis exclusivos. ROCKSTAR (R$ 7,99 por mês) Além de todos os benefícios anteriores, você ganha acesso ao nosso grupo exclusivo no WhatsApp. Nele, você fará parte de uma incrível comunidade de aficcionados por música. Você também interage diretamente com os criadores, dá nota nas resenhas, deixa perguntas para as entrevistas e participa de várias outras maneiras da criação de conteúdo no canal. METAL GOD (R$24,99 por mês) Além de todos os benefícios anteriores e dar uma grande ajuda para a nossa criação de conteúdo, você pode ESCOLHER TEMA DE EPISÓDIO. Dentro da temática do canal, é claro. SEJA MEMBRO: https://www.youtube.com/channel/UCo1lgalkCBW9Uv3GyrzhhkA/join ******************************************** Nos siga nas redes sociais: Twitter: @iurimoreira / @rafael2099 Instagram: @iurimoreira / rafaelaraujo2099
Egyre kevesebben laknak Budapesten, de egyre több az autó. Több kerületben most megszüntetik a lakosok ingyenes parkolását, és éves szinten több tízezer forintos díjat vezetnek be. Azt mondják, ettől zöldebb lesz a város, és parkolni is könnyebb lesz. A tiltakozók sarcról és átverésről beszélnek. Van egy kerület, ahol már két éve így csinálják. Ott vajon mi sült ki ebből? Vendégünk Rádai Dániel, Józsefváros alpolgármestere.Az e heti Péntek Reggelt Szurovecz Illés (szerkesztő-műsorvezető), Lőrinczi Áron (sound design), Rádi Gábor (animáció) és Laki Gergely (kreatív producer) hozta el neked.Iratkozz fel, és mindig szólunk, amikor megjelent egy új epizód.https://pentekreggel.huTámogasd te is a Partizán munkáját!https://cause.lundadonate.org/partizan/supportIratkozz fel a Partizán hírlevelére:https://csapat.partizanmedia.hu/forms/partizan-feliratkozasYouTube: https://www.youtube.com/@PartizanmediaFacebook: https://facebook.com/partizanpolitika/ Facebook Társalgó csoport: https://www.facebook.com/groups/partizantarsalgo Instagram: https://www.instagram.com/partizanpolitika/TikTok: https://www.tiktok.com/@partizan_mediaPartizán saját gyártású podcastok: https://rss.com/podcasts/partizanpodcast/További támogatási lehetőségekről bővebben:https://www.partizanmedia.hu/tamogatas
Sarc Fighter: Living with Sarcoidosis and other rare diseases
In Episode 125 of the FSR Sarc Fighter Podcast, a look into the great success of the Externally Led Patient Focused Drug Development Meeting with the FDA. John co-hosted the meeting with Mary McGowan, the CEO of the Foundation for Sarcoidosis Research as you - the sarcoidosis community joined in to share your stories with the FDA to let the policy and decision makers know what you are dealing with. How hard it is to live with this disease and how few medicines are available to treat it. The meeting happened Monday, October 28th in Washington, D.C.. In this episode of the podcast I'll give you a look behind the scenes as months of work came together in just a couple of days for a fantastic presentation to the FDA. #sarcoidosis Show notes Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
The Women's Equality Party is urging members to vote to close down the party next month, just under 10 years after it began. The founders say financial challenges and a changed political landscape mean their campaigning model no longer works. Nuala McGovern is joined by the Guardian's Emma Graham-Harrison and Jemima Olchawski from the Fawcett Society to discuss.The BAFTA-winning actress Anna Maxwell Martin stars as Delia in the new ITV series Until I Kill You. It tells the true story of Delia Balmer, who was the girlfriend of serial killer John Sweeney. Anna joins Nuala to talk about why she wanted to tell Delia's story, as well as her personal experiences of grief and struggles with the special educational needs system. A new study has evaluated the effectiveness of Sexual Assault Referral Centres (SARCs), which offer specialist support to survivors of sexual violence. According to the research led by Coventry University, the majority of survivors surveyed reported a positive experience. To discuss the findings, we speak to the project lead Lorna O'Doherty, Professor of Trauma and Mental Health at Coventry University; and a woman we're calling Lauren who has accessed the services of a SARC.The Colombian artist Alejandra Aristizabal creates 3D artwork using a native Colombian plant called the Fique. Her art helps to give a voice to indigenous women and raise awareness of the work they do. She is currently part of a residency programme at Christie's of London supporting artists who are using their work to bring about change. Alejandra joins Nuala to tell us more.Presenter: Nuala McGovern Producer: Lottie Garton
¡Vótame en los Premios iVoox 2024! El último peldaño (18/10/2024) EL ESPAÑOL QUE HABLÓ CON LA LUNA. HOMENAJE A CARLOS GONZÁLEZ El pasado 11 de agosto falleció Carlos González, el ingeniero que fue Jefe de Operaciones y posteriormente Director Adjunto del Complejo de Comunicaciones Espaciales de Madrid de la NASA. Empezó a trabajar para NASA en el año 1968, justo antes de que se lanzara el Apollo VII, y participó en todos los viajes Apollo, el Apollo-Soyuz, el Skylab, el Transbordador Espacial, y todos los vuelos científicos robotizados. Tuvo el privilegio de ser la primera persona de la Tierra en escuchar la famosa frase de Neil Armstrong ""Houston, aquí base Tranquilidad. El Águila ha aterrizado" durante la misión Apolo 11. En este programa queremos rendir un homenaje a su memoria y recordar con nuestro colaborador Francisco Barrera el importante papel que el centro de seguimiento espacial español jugó en la carrera espacial tripulada y sobre todo en la llegada del ser humano a la Luna. ¿OVNIS EN GARABANDAL? En los lugares donde se han producido apariciones, bien sea de tipo religioso o de otra naturaleza, solemos encontrarnos con testimonios de otros fenómenos extraños, especialmente avistamiento de luces misteriosas u objetos extraños. . A raíz de la emisión del pasado viernes en el que hablamos de las supuestas apariciones marianas de San Sebastián de Garabandal recibimos un mensaje en nuestro WhatsApp (644823513) remitido por Jorge Gutierrez, desde León, hablándonos de posible avistamiento OVNI en dicho enclave. Hablamos esta noche del tema. EL MISTERIO DE LOS SARCÓFAGOS DE PLOMO DE NOTRE DAME DE PARÍS En unos trabajos de reconstrucción de la Catedral de Notre Dame de París, tras el incendio de 2019, aparecieron dos extraños sarcófagos de plomo, antropomorfos, bajo el crucero del templo que permanecían bajo el edificio desde la edad media. El equipo de arqueólogos que estudió las tumbas dedujo que pertenecieron a dos hombres de alto nivel social. Posiblemente, un clérigo y un joven noble. Los restos de ambos personajes revelan que tuvieron muertes lentas y dolorosas. Ahora tras años de investigación parece arrojarse luz sobre la identidad de los restos. Con el historiador Juan Francisco Belmar vamos a conocer lo que se sabe hasta ahora de ese enterramiento, de la identidad de los ocupantes de la tumbas y trataremos de dar respuesta al misterio de tan curioso enclave para la última morada de ambos personajes. Dirección y presentación: Joaquín Abenza. Producción y documentación: María José Garnández. Con la colaboración de: Mónica Rubio, Antonio Tapia, Concha Soler y Juan Sánchez Blog del programa: http://www.elultimopeldano.blogspot.com.es/ WhatsApp: 644 823 513 Programa emitido en Onda Regional de Murcia
Per la prima volta in Svizzera è stata utilizzata da una donna una celletta capace di provocare la morte in pochi minuti. Come funziona? E perché sono stati eseguiti degli arresti? #attualità #svizzera #medicina #melepodcast #spotify #torcha Learn more about your ad choices. Visit megaphone.fm/adchoices
Rafa Latorre reflexiona sobre el plan de acción por la democracia.
Nuestro primer Live de La Luz del Misterio de la Temporada 31 From London: Vive el Misterio... Pasa, ponte cómodo y disfruta... 31 años de emisión cumple La Luz del Misterio. Gracias por estar al otro lado del receptor y ayudarnos a dar luz al misterio. Esta semana hablamos de El Libro de las transformaciones luminosas de Senenmut. El viaje al Más Allá del gran hombre del reinado de Hatshepsut del Dr. Francisco Valentín y Teresa Bedman es un deleite de viaje hacia la espiritualidad del antiguo Egipto. Hablamos entre otras muchas cosas de la selección de fragmentos elegidos entre los que integran los grandes cuerpos de doctrina religiosa egipcia: los Textos de las Pirámides, los Textos de los Sarcófagos y el Libro de los Muertos. Esta colación se incrementa con otras composiciones de orden ritual que han recibido el nombre de ‘Liturgias'. Sen-en-Mut convertido en espíritu Aj, comparte el destino de los Reyes en el Más Allá: Textos de los Sarcófagos, Invocaciones. Conocemos más sobre el descubimiento hecho por los arqueologos Francisco Valentín y Teresa Bedman en el muro Oeste de la cámara, Sen-en-Mut ordenó incluir una ‘Falsa Puerta', entrada simbólico-mágica por la que, conforme a las creencias egipcias, su espíritu transformado podría entrar y salir desde el Más Allá al mundo de los vivos, a su libre antojo. El trayecto del viaje que Sen-en- Mut pretendía realizar como ‘espíritu luminoso', pasaba por el templo de Hat-Hor, en el interior del templo de Deir El-Bahari. Síguenos a través de: edenex.es ZTR Radio.online London Radio World En Ivoox Itunes Spotify YouTube Amazon Music Si deseas apoyarnos: https://www.ivoox.com/ajx-apoyar_i1_support_29070_1.html SI DESEAS SALUDARNOS DESDE CUALQUIER PUNTO DEL PLANETA PUEDES HACERLO A TRAVÉS DE NUESTRO WHATSAPP 00 44 7378 880037 Premium anual https://www.ivoox.vip/premium?affiliate-code=64595b3bf9bbe800ad6055b05325d06b Premium mensual https://www.ivoox.vip/premium?affiliate-code=d5a7a6034158598dd496da251a5e992b Plus https://www.ivoox.vip/plus?affiliate-code=d27d09da27b1dda3e45932cd83534a12
Nuestro primer Live de La Luz del Misterio de la Temporada 31 From London: Vive el Misterio... Pasa, ponte cómodo y disfruta... 31 años de emisión cumple La Luz del Misterio. Gracias por estar al otro lado del receptor y ayudarnos a dar luz al misterio. Esta semana hablamos de El Libro de las transformaciones luminosas de Senenmut. El viaje al Más Allá del gran hombre del reinado de Hatshepsut del Dr. Francisco Valentín y Teresa Bedman es un deleite de viaje hacia la espiritualidad del antiguo Egipto. Hablamos entre otras muchas cosas de la selección de fragmentos elegidos entre los que integran los grandes cuerpos de doctrina religiosa egipcia: los Textos de las Pirámides, los Textos de los Sarcófagos y el Libro de los Muertos. Esta colación se incrementa con otras composiciones de orden ritual que han recibido el nombre de ‘Liturgias'. Sen-en-Mut convertido en espíritu Aj, comparte el destino de los Reyes en el Más Allá: Textos de los Sarcófagos, Invocaciones. Conocemos más sobre el descubimiento hecho por los arqueologos Francisco Valentín y Teresa Bedman en el muro Oeste de la cámara, Sen-en-Mut ordenó incluir una ‘Falsa Puerta', entrada simbólico-mágica por la que, conforme a las creencias egipcias, su espíritu transformado podría entrar y salir desde el Más Allá al mundo de los vivos, a su libre antojo. El trayecto del viaje que Sen-en- Mut pretendía realizar como ‘espíritu luminoso', pasaba por el templo de Hat-Hor, en el interior del templo de Deir El-Bahari. Síguenos a través de: edenex.es ZTR Radio.online London Radio World En Ivoox Itunes Spotify YouTube Amazon Music Si deseas apoyarnos: https://www.ivoox.com/ajx-apoyar_i1_support_29070_1.html SI DESEAS SALUDARNOS DESDE CUALQUIER PUNTO DEL PLANETA PUEDES HACERLO A TRAVÉS DE NUESTRO WHATSAPP 00 44 7378 880037 Premium anual https://www.ivoox.vip/premium?affiliate-code=64595b3bf9bbe800ad6055b05325d06b Premium mensual https://www.ivoox.vip/premium?affiliate-code=d5a7a6034158598dd496da251a5e992b Plus https://www.ivoox.vip/plus?affiliate-code=d27d09da27b1dda3e45932cd83534a12
John Grant, ex-vocalista da banda de Czars, lançou no mês passado o 6º disco da sua carreira solo, The Art O The Lie aborda o tema recorrente do inferno pelo qual ele passou na infância e adolescência por ser gay numa família ultra-religiosa e conservadora numa cidade não menos conservadora e ultra-religiosa.
Sarc Fighter: Living with Sarcoidosis and other rare diseases
Zombie is the theme song for the FSR Sarc Fighter podcast. If you listen, you know. Shortly after I launched the podcast Mark Steier e-mailed me to say he had sarcoidosis and had written and recorded a song about it. I didn't expect much. But the song blew me away, and Mark quickly agreed to allow me to use it as the theme song. You've been hearing it ever since. Meanwhile Mark's health has been up and down, sometimes seriously down. And -- his wife and caregiver Caeleigh, is now stepping up and running the New York City Marathon as an official FSR fundraiser. So she also joins me today. In addition, podcast "regular" Royce Robertson met me on a bicycling journey across New York State, where I interviewed him about his health and his own fundraising effort through cycle4sarc. It's a big Episode! Mark and Caeleigh! Riding with Royce! Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Support Mark's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
I sometimes surf social media in search of someone I think might be an excellent guest for this show. When I found retired US Army soldier Orvie B. Baker, Jr. I knew I had found true excellence! See, Orvie is a former SARC, Sexual Assault Response Coordinator, for the Army SAPRO (Sexual Assault Prevention and Response Office). He has tons of experience as a sexual assault victim advocate and supervised and trained other Army SA victim advocates. Something even more extraordinary about Orvie is that after he retired from the Army, he went back to school and received a Bachelor of Science degree in Digital Cinematography! And now he's using that new-found love of movie making to produce a full-length documentary about the nation's first , located at Boom Island Park in Minneapolis, Minnesota. That was the post I found that made me want to reach out to Orvie…and I'm so glad I did! The fact that there is a Survivors Memorial blew me away! What a phenomenal idea!...but then to have someone with as much passion and zeal for victims and survivors as Orvie to come up with the idea to produce a documentary about the Memorial…boom!...mind blown! I just had to reach out to Orvie to see if he would be a guest on SASS, and fortunately for all of us, he agreed. Orvie goes into detail about how he found out about the Memorial, and what he did to start production of his documentary. This is a fascinating story, so don't miss this episode!! Accompanying Orvie's idea to produce his documentary, he also has a push going to get others interested in this project so that other memorials dedicated to survivors of sexual violence could be built in each state. Think that's a great idea?—me too! Which is why I want to encourage you to donate to Orvie so that he can get this documentary marketed to help get the word out. Orvie has a GoFundMe campaign that you can go to and donate! The link is , and listed below in case this link doesn't work on some podcast platforms. Let's do this: let's honor Orvie's service to this country and to his work as a SARC, and to his amazing idea to produce the documentary, by financially supporting Orvie! He also has a Patreon donation campaign that you can donate to or at the address listed below. On top of all that Orvie has done and is doing, he also wrote a children's book about staying safe from sexual predators called, “Don't Touch Me! Say No to Sexual Harassment,” that can be found on Amazon. I've read it…I highly recommend it! Orvie provided me with his bio...here it is: MR. ORVIE B. BAKER, JR. Orvie B. Baker, Jr. is a Chicago Native who moved to Louisiana at an early age and has been traveling ever since. Mr. Baker joined the Army immediately after High School,attending Basic Training in South Carolina; Army Individual Training and Airborne Training in Georgia; then serving at his first duty station at Fort Bragg, North Carolina. Mr. Baker's enlistment offered multiple overseas experiences, including: Germany, Spain, England, Bosnia-Herzegovina, and Iraq. In 2003, he attended the Defense Equal Opportunity Management Institute (DEOMI) and became an Army Equal Opportunity Advisor (EOA). In 2005, Mr. Baker deployed to Iraq as an EOA and, upon his return, transitioned to an Instructor at DEOMI. After twenty years in uniform, Mr. Baker was back in front of troops, in a civilian- capacity, as a Sexual Harassment/Assault Response & Prevention (SHARP) Instructor working to certify Victim Advocates and Sexual Assault Response Coordinators for the Army. Mr. Baker served as an Educator and Presenter for Catharsis Productions where he co-presented “Got Your Back”, a 90-minute interactive SHARP presentation. From 2014 to 2016 he conducted training the world over from the United States to Japan and areas in between . In his most recent position, Mr. Baker served as the 127th Wing Sexual Assault Prevention and Response Program Manager at Selfridge from 2017 to 2019 and represented the organization both on and off Base. He was instrumental with standing up the 127th Wing Airmen Wellness Center; always the consummate motivator he earned the nickname, "DJ SAPR". Mr. Baker is the President of The Einmalig Group, LLC Consulting where he specializes as a guest speaker, educator and in climate assessments of workplace areas. He also wrote a book titled,"Don't Touch Me!" "Say No to Sexual Harassment". Thank you for listening to Sexual Assault Survivor Stories! Please become a subscriber…it helps the show grow! And, please tell everyone you know about the podcast…that also helps the show grow. Finally, please do your part to help bring justice to victims and survivors of rape and sexual assault; the best way to do this without having to sign up for anything or pay anything is to Start By Believing when it comes to listening to or supporting victims and survivors. Because, we all know someone whose life has been impacted by rape or sexual assault. Here are some important links for you. Please check these out!: davemarkel@gmail.com
2024. július 9., kedd 8-9 óra Múlt, jelen, jövő! Sokan, még nagy tapasztalattal és tudással bíró szakemberek közül is néhányan úgy tekintenek a befektetésekre, mint a világ legegyszerűbb dolgára, amelynek lényege egy széles részvény és kötvény portfólió passzív tartása, arányok ízlés szerint. Szakértőnknek kevesebb egyszerűsítés tudja felvinni úgy a pulzusát, mint a fenti gondolatsor, ezért kikértük erről a véleményét. Gyurcsik Attila, az Accorde Alapkezelő Zrt. vezérigazgatója. ARANYKÖPÉS . A világ tele van olyan dolgokkal, amelyeknek csak örülni lehet. Csak ahhoz nem jutnak el az élet csodái, akinek nincs füle, szeme, érzékelése a csodákhoz. Fábián Juli, énekesnő (1980) MÁGIKUS-E, e-kereskedelmi rovat. Brüsszeli csapás a kínai e-kereskedőkre? A jelenlegi uniós szabályozás értelmében a 150 eurónál kisebb értékű, a közösség határain kívülről érkező csomagok vámmentesek, Brüsszel azonban változtatna ezen. Peking valószínűleg nem hagyná válasz nélkül, ha az EU papíron nem, de gyakorlatilag egy újabb intézkedéssel célozná a kínai termékeket. Szabó László, a Growww Digital digitálismarketing-ügynökség ügyvezető partnere. ÉSZJÁTÉK, logisztikai rovat: Újra konténerpara van! Meredeken emelkedik a konténerek tengeri szállításának költsége, és ez elkerülhetetlenül felfelé fogja nyomni az inflációt Európában és Amerikában is. Mihály Attila, a Trans-Sped Kft. légi-tengeri szállítmányozási osztályvezetője.
Russ, Waggie and Andy chat about Sarc, Byrne, season tickets and Chally, plus there's a snippet ahead of the Euro's. Subscribe to our Patreon to get exclusive episodes! Hosted on Acast. See acast.com/privacy for more information.
Arconada y Sergio Pérez hablan de Garfield, La Casa, Misión hostil, Immaculate, María Montessori, El mal no existe, Ooh la la! y Justicia Para Sohee.
Los amuletos forman parte de cualquier tribu o civilización, ya sea antigua o moderna. ¿Quién no tiene esa moneda de la suerte o ese colgante o anillo o pulsera que piensa que le da suerte? Muchos son los amuletos que se han descubierto en los diferentes estratos investigados en el Antiguo Egipto. Eso si, no hay constancia escrita sobre los efectos que se querían producir con estos amuletos. No sucede lo mismo con los conjuros y la magia, de los que tenemos numerosas descripciones en diferentes papiros y jeroglíficos encontrados, veremos algunos de ellos. La magia y los conjuros en el Antiguo Egipto: Una ventana al mundo espiritual y místico El Antiguo Egipto es conocido por sus impresionantes pirámides, su arte fascinante y su compleja mitología. Pero más allá de estos elementos tangibles, existía un mundo espiritual y místico que permeaba cada aspecto de la vida egipcia: la magia y los conjuros. Estas prácticas eran fundamentales para la cultura egipcia y se consideraban una fuerza vital en la existencia cotidiana y en el más allá. La magia, o "Heka", era vista como una de las fuerzas fundamentales del universo, intrínsecamente ligada a la religión y la vida diaria. No existía una distinción clara entre la magia y la religión; ambas eran consideradas necesarias para mantener el equilibrio del cosmos y la armonía con los dioses. Los egipcios creían que mediante la magia podían influir en los eventos naturales y sobrenaturales, protegerse de las fuerzas maléficas y asegurar su bienestar en la vida y en la muerte. Los dioses de la magia, como Isis y Thoth, eran venerados por su dominio sobre los hechizos y los rituales. Isis, conocida como la Gran Maga, era especialmente reverenciada por su poder para proteger y curar, mientras que Thoth, el dios de la sabiduría, era el guardián de los secretos mágicos y las palabras de poder. Los conjuros y hechizos eran omnipresentes en la vida de los antiguos egipcios. Desde amuletos que ofrecían protección contra amenazas específicas hasta rituales para ganarse el favor de los dioses, la magia estaba entrelazada con la existencia humana. Los amuletos, como el ojo Udyat asociado a Horus, eran comunes y se creía que traían buena fortuna y protección contra el mal de ojo. Los escarabeos, por ejemplo, simbolizaban la regeneración y el renacimiento, y eran llevados tanto por vivos como por muertos. Los rituales mágicos también jugaban un papel crucial en la protección contra las fuerzas oscuras. Se realizaban numerosos ritos para evitar los conjuros y el poder de los enemigos, desde pócimas mágicas hasta prácticas que recordaban al vudú. Incluso el faraón Ramsés III fue víctima de una conspiración que involucraba magia negra, lo que demuestra la profunda creencia en el poder de los conjuros y la necesidad de protegerse contra ellos. La magia egipcia no solo se limitaba a la protección y la curación; también se utilizaba para guiar a los difuntos en su viaje al más allá. Los "Textos de las Pirámides" y los "Textos de los Sarcófagos" son ejemplos de literatura funeraria que contenían hechizos destinados a ayudar al alma del difunto a superar los obstáculos en el más allá y alcanzar la inmortalidad. El legado de la magia egipcia sigue fascinando a historiadores, egiptólogos y entusiastas de lo oculto. Aunque gran parte de su práctica pertenecía al mundo de la transmisión oral y se ha perdido en el tiempo, los amuletos, los textos y los relieves que han sobrevivido ofrecen una ventana a este aspecto intrigante y misterioso de una de las civilizaciones más avanzadas y enigmáticas de la historia antigua. La magia en el Antiguo Egipto nos recuerda que, para esta cultura, lo espiritual y lo mágico eran tan reales y vitales como los monumentos de piedra que han resistido el paso del tiempo. Nos invita a explorar más allá de lo visible y a reconocer la importancia de lo invisible en la construcción de una sociedad y su cosmovisión. Puedes leer más y comentar en mi web, en el enlace directo: https://luisbermejo.com/vida-monacal-zz-podcast-05x35/ Puedes encontrarme y comentar o enviar tu mensaje o preguntar en: WhatsApp: +34 613031122 Paypal: https://paypal.me/Bermejo Bizum: +34613031122 Web: https://luisbermejo.com Facebook: https://www.facebook.com/ZZPodcast/ X (twitters): https://x.com/LuisBermejo y https://x.com/zz_podcast Instagrams: https://www.instagram.com/luisbermejo/ y https://www.instagram.com/zz_podcast/ Canal Telegram: https://t.me/ZZ_Podcast Canal WhatsApp: https://whatsapp.com/channel/0029Va89ttE6buMPHIIure1H Grupo Signal: https://signal.group/#CjQKIHTVyCK430A0dRu_O55cdjRQzmE1qIk36tCdsHHXgYveEhCuPeJhP3PoAqEpKurq_mAc Grupo Whatsapp: https://chat.whatsapp.com/FQadHkgRn00BzSbZzhNviThttps://chat.whatsapp.com/BNHYlv0p0XX7K4YOrOLei0
April is Sexual Assault Awareness and Prevention month. In this episode of Blacksnake Bytes, we sit down with Julie Caskey, our Sexual Assault Response Coordinator (SARC) to talk about the services and resources that she and her team provide to survivors of sexual assault, as well as their families, coworkers, and supervisors. SARCs are responsible for ensuring that victims of sexual assault receive appropriate and responsive care, and provide the Wing Commander with a broad understanding of the unit's climate in regards to sexual assault. The SARC also conducts annual training for DOD members on sexual assault prevention. Don't miss this episode!
Carlos Martínez, autor de 50 lugares sagrados de Galicia, sale en busca del sarcófago de San Trocado.
El Team-Mumra de la oposición volvió a sacar de su Sarcófago del recuerdo a Neto Zedillo Ponce de Lión
Being in the US Army Reserve requires discipline. And commitment. And top-notch performance. If you fail at any of these there can be serious consequences…including being discharged. One of the requirements is that during “battle assembly” (weekend training) you have to be there; if a Soldier fails to attend on a consistent basis, they can face that discharge. Such was the case of then Sergeant Marisa Saucedo. She failed to show up for battle assembly—a lot. So much so that almost a year had gone by, and Marisa hadn't shown up for battle assembly. And eventually, she got called in to her commander's office for a disciplinary review for her unsatisfactory attendance and performance. She was about to be kicked out of the Army Reserve. But fortunately, Marisa had an exemplary commander who asked her what she wanted from the Army…she explained that she wanted to serve her country and remain in the Reserves. Then she told her commander why she hadn't been coming to battle assembly: that she was in an abusive relationship and that her significant other was forbidding her from attending battle assembly, but that she was going to get out of the relationship. Her commander gave Sgt. Saucedo a second, and final, chance. That was 20 years ago. Today Marisa is a Command Sergeant Major, the second highest rank for an enlisted Soldier. CSM Saucedo is an exemplary Soldier. And she is also a civilian who holds a career as an Army Reserve Sexual Harassment/Assault Response and Prevention (SHARP) Program Director and an Army SARC (Sexual Assault Response Coordinator). Marisa feels like she has the best of both her military and civilian worlds. She loves and excels at her job. Marisa is an extremely articulate and intelligent person…these qualities shine in this episode, and I feel extremely honored and privileged to have her on this show. Because Marisa not only explains what she does as a SARC and Sexual Harassment/Assault Response and Prevention SHARP Program Director, but she also was willing to tell us about her sexual assault and interpersonal violence experience, and about her healing journey. There's much benefit to be gained in listening to this episode; I hope you listen to this, and that you Start by Believing; because we all know someone whose life has been affected by rape or sexual assault. And finally, please share this episode with everyone you know. #thrivivors #thejanbrobergfoundation #janbroberg #safeinharmsway #epizonstrategy #intentionallyfearless #thelastimsorry #feelingsmall #sasspodcast #retiredcop #traumainformed #traumainformedexpert #sexassaultvictim #survivorsunite #rapevictim #USArmyReserve #commandsergeantmajor #sarc #sharp #sexualassaultsurvivorstories #podcast #markelconsulting #jessicapridelawfirm #gettraumainformed #safeinharmsway #projectbeloved #saan #irishangel #crimevictimsassistancecenter #coloradoassociationofsexcrimeinvestigators #girlsfightback #outdoordefense #worthfightingfor #thejanbrobergshow #thrivivors #thejanbrobergfoundation #sassyselfdefenseguide #badassselfdefense #imworthfightingfor #vawa #ashforduniversity #amandacoleman #remembermolly #fightrapeculture #forcescience
This is part 2 of our interview with Chris Klaftenegger. Chris was a special operations medic in two different military branches, and he has been to selection courses in the US Navy, Marines, and Air Force. He began his career as a SARC - a Special Amphibious Recon Corpsman at 1st Recon Battalion. After that, he transferred to a reserve unit of the Air Force and went through selection and training to become a Pararescueman, also known as a PJ. He also attended countless other schools, ranging from the Coast Guard's Advanced Rescue Swimmer school to avalanche and tactical structural collapse search and rescue schools. Chris then worked in private security as an emergency response medic, personal security specialist, and medical instructor. Following that, he transitioned to the world of business and technology. He is currently the Chief Operating Officer of Onyx Industries, a company of former special operators making intelligent unmanned systems and airborne solutions for the defense industry. In this episode, we talk about Chris transitioning out of his role as a special operations medic and into entrepreneurship, developing advanced defense technology with Onyx Industries. Time Stamps:00:00:22 Clipping Tridents00:03:11 Incrementally Harder Courses00:05:03 Leadership by Example00:07:01 What is Chris Doing Now?00:14:41 PJ to Building Robots00:19:13 Tandem Barrels00:24:44 Barrel Improvements in 15 Years00:27:29 Mitigating Open Shock00:31:44 Rough Openings00:33:00 Get in Touch with Chris Klaftenegger00:35:32 Outro
Chris Klaftenegger was a special operations medic in two different military branches, and he has been to selection courses in the US Navy, Marines, and Air Force. He began his career as a SARC - a Special Amphibious Recon Corpsman at 1st Recon Battalion. After that, he transferred to a reserve unit of the Air Force and went through selection and training to become a Pararescueman, also known as a PJ. He also attended countless other schools, ranging from the Coast Guard's Advanced Rescue Swimmer school to avalanche and tactical structural collapse search and rescue schools. Chris then worked in private security as an emergency response medic, personal security specialist, and medical instructor. Following that, he transitioned to the world of business and technology. He is currently the Chief Operating Officer of Onyx Industries, a company of former special operators making intelligent unmanned systems and airborne solutions for the defense industry. In this episode, we talk about Chris' career, his experiences in various selection courses, and his time as a Marine Recon instructor. We're splitting this conversation into two parts and will run the second half in a few days. Time Stamps: 00:00:22 Intro to Chris Klaftenegger00:01:26 Military Journey00:08:44 BUD/S vs BRC00:12:08 Learning to Regulate00:18:58 Recon and PJ Community Differences00:20:30 Evolution of Combat Medicine00:27:32 Recon Instructor00:36:32 Weakest Person in the Class00:40:05 Sponsor00:40:57 Common Signals of the "X Factor"00:44:01 Selection is More Than Finding the Best Exercisers00:46:50 Outro
Rivals Joaquim and Rita catch up and discuss their careers. How many Portuguese-English cognates do you notice throughout their dialogue?
October is Domestic Violence Awareness Month and SARC (The Sexual Assault/Spouse Abuse Resource Center) is partnering with local businesses and organizations to increase awareness through a series of events and promotions. SARC's Alison Imhoff and Beckie Chandler stop by to talk about these events and much more on this episode of Mainstreet. If you need help, call the SARC hotline at 410-836-8431. Learn more about SARCsarc-maryland.org InstagramFacebookinfo@sarc-maryland.org410-836-8431Support the showPlease visit our sponsor. Your Pet AuPairMention the Mainstreet Podcast and receive 10% off your first invoice with Your Pet AuPair. Please consider supporting The Mainstreet PodcastPatreonBuy Me A CoffeeMainstreet on the web and social mediaWebsiteFacebookTwitterInterested in sponsoring Mainstreet or have guest suggestions, please email us at: info@themainstreetpodcast.com
Sarc Fighter: Living with Sarcoidosis and other rare diseases
Tony Haskel first appeared on the podcast in March of 2023 - about five months prior to this recording. At the time he knew he had sarcoidosis, but he didn't really know what was in store. Now, months later he is much better acquainted with sarc, but still has an optimistic outlook. Show Notes www.kinevant.com www.sarcoidosistrial.com Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6 ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517 ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554 Support Tony's fundraiser! https://stopsarcoidosis.rallybound.org/TonyHaskel Tony's email: tony.haskel@gmail.com Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com email Royce Robertson roycelrobertson@gmail.com
Osteosarcoma Webinar Series: Scott Okuno, MD - SARC Medical Officer and Ann Graham, Executive Director of MIB Agents join us on OsteoBites to discuss how SARC (Sarcoma Alliance for Research through Collaboration) work together to drive collaboration in the sarcoma community and support sarcoma research. -- Dr. Scott Okuno is Professor of Oncology at Mayo Clinic in Rochester, Minnesota. He is a recognized expert in sarcoma and clinical research. Dr. Okuno has been the SARC Medical Officer since 2012. In this role, he provides medical oversight to the day-to-day activities of the SARC clinical trials. Dr. Okuno regularly interacts with the SARC Research Project Management team and the study Principal Investigators to ensure proper study conduct, quality data and overall safety for all SARC clinical trials. Dr. Okuno was appointed SARC Chief Medical Officer in September 2022, and joined SARC Board of Directors October 2022. --- What We Do at MIB Agents: PROGRAMS: End-of-Life MISSIONS Gamer Agents Agent Writers Prayer Agents Healing Hearts - Bereaved Parent and Sibling Support Ambassador Agents - Peer Support Warrior Mail Young Adult Survivorship Support Group EDUCATION for physicians, researchers and families: OsteoBites, weekly webinar & podcast with thought leaders and innovators in Osteosarcoma MIB Book: Osteosarcoma: From our Families to Yours RESEARCH: Annual MIB FACTOR Research Conference Funding multiple $100,000 and $50,000 grants annually for OS research MIB Testing & Research Directory The Osteosarcoma Project partner with Broad Institute of MIT and Harvard ... Kids are still dying with 40+ year old treatments. Help us MakeItBetter. https://www.mibagents.org Help support MIB Agents, Donate here https://give-usa.keela.co/embed/YAipuSaWxHPJP7RCJ SUBSCRIBE for all the Osteosarcoma Intel
Sarc Fighter: Living with Sarcoidosis and other rare diseases
Matthew Campbell was trying to come back from a couple years of being out of shape, but his body seemed off somehow. His normal pep on the basketball court just wasn't there. What WAS there was sarcoidosis. Listen in as Matthew shares the story of how he gradually realized he was fighting way more than his fitness. Show notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq Back episodes from folks at the gala: Erica Courtenay Mann: https://podcasts.apple.com/ca/podcast/episode-55-erica-courtenay-mann-has-sarcoidosis-on/id1499587273?i=1000551017276 Warren Robinson: https://beatsarc.podbean.com/e/episode-50-warren-robinson-s-father-died-suddenly-and-the-family-struggled-to-find-out-why/ Calvin Harris: https://www.youtube.com/watch?v=X1BJS2VMJSY Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com email Royce Robertson roycelrobertson@gmail.com
Sarc Fighter: Living with Sarcoidosis and other rare diseases
Betsy Bennett is fighting Sarcoidosis. That might seem easy after breast cancer led to a double mastectomy. But now the fatigue and ongoing battle with Sarc are taking a big toll on her quality of life. Listen in as she shares the story of how she thought she was disease free for just a brief time. Show Notes www.kinevant.com www.sarcoidosistrial.com Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6 ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517 ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554 Betsy on Youtube: www.youtube.com/@DrBetsyB Sarcoidosis Awareness Month Info: https://www.stopsarcoidosis.org/standupforsarc/ Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/ Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com email Royce Robertson roycelrobertson@gmail.com
Ep 139 What Is Buddy Aid? On this episode of the Palmetto Guardian we talk with Sgt. 1st Class Joshua Bixler, Sgt Travis Duncan, South Carolina National Guard Victim Advocates and Jill Williams, Sexual Assault Prevention and Response Corrdinator for South Carolina National Guard about April being Sexual Assualt Awarness Month. We talk about the Buddy Aid program and different resources that are out there to help you or someone you know who has been affected by sexual assault. The Palmetto Guardian is hosted by Staff Sgt. Chelsea Weaver and Spc. Turner Horton with the South Carolina National Guard Public Affairs office. For more information contact Sexual Assault Prevention & Response Program: JFHQ SARQ: (803) 727-2413 1225 Bluff Rd. Columbia, S.C. 29201 DOD Safe Help Line: (877) 995-5247 0:00 - Intro 1:19 -What is Buddy Aid? 4:04 - How does deterrence play a role in sexual assault prevention? 6:19 - Does Buddy Aid require training like victim advocacy? 7:43 - What is the difference between Buddy Aid and victim advocacy? 15:45 - What is the process of reporting a sexual assault and what is the difference between restricted and unrestricted? 18:02 - Does a report of sexual assault have to be between soldiers? 19:40 - Why would someone not report a sexual assault? 25:28 - Are there any tips for soldiers to help them with sexual assault prevention? 31:02 - Who can become a victim of sexual assault? 35:48 - Sexual assault awareness isn't just for a month. 36:24 - Would you like to become a victims advocate?
Homem faz sarcófago para salgadinho na tentativa de enganar próximas gerações.
Sarc Fighter: Living with Sarcoidosis and other rare diseases
In Episode 74 of the Sarc Fighter Podcast we take a deep dive into the reality that Sarcoidosis in more prevalent in people of color, but they are less likely to participate in clinical trials. That's a problem for medical professionals who are trying to help solve the sarcoidosis riddle, to find more effective treatments and help more people. Why is that? Three guests join me today to talk about it. They share their thoughts and ideas about the reluctance of patients to participate often because of trust issues, and bias on behalf of medical professionals to recruit African Americans for trials. Dr. Ogugua Obi of the Brody School of Medicine at East Carolina University in North Carolina. Kathryn Washington, a sarcoidosis patient and member of the FSR ACTe Now Patient Advisory Committee Calvin Harris, sarcoidosis patient and a member of the ACTe Now Patient Advisory Committee Show Notes The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/ Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo FSR Webpage on Financial planning for life with Sarc: https://www.stopsarcoidosis.org/financial-assistance-support-for-those-living-with-sarcoidosis/ #Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/ The New FSR Initiative https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/ Nourish by Lindsey: https://www.nourishbylindsey.com/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
Sarc Fighter: Living with Sarcoidosis and other rare diseases
The Foundation for Sarcoidosis Research is looking for people who want to help in the fight. In 2022 FSR announced the Global Sarcoidosis Clinic Alliance - a member program of clinics, hospitals, and individual providers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis. These providers, such as the Cleveland Clinic, are among the top care centers for Sarcoidosis in the United States. FSR is looking for the right people to lead support groups and other patient-focused activities at each center. In this episode of the Sarc Fighter podcast, Mindy Buchanan of FSR and Rhonda Jenkins of the Cleveland Clinic join me to talk about the types of people they are searching for and how to get more information. Show Notes Kinevant Clinical Trial information: https://bit.ly/3DaVsR6 More about Kinevant: https://kinevant.com/about-us/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237 FSR Webpage on Financial planning for life with Sarc: https://www.stopsarcoidosis.org/financial-assistance-support-for-those-living-with-sarcoidosis/ #Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/ The New FSR Initiative https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/ Nourish by Lindsey: https://www.nourishbylindsey.com/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
Today's Story: Expanding Support
Sarc Fighter: Living with Sarcoidosis and other rare diseases
In Episode 72 of the Sarc Fighter podcast, Regina Gordon, an FSR Advocate shares the story of how sarcoidosis has curtailed her life for decades. She bravely shares how the disease has spread from her lungs to her skin and lymph nodes and other parts of her body. But she is not willing to give up. She's improved her outlook and even earned two college degrees. Listen in to hear how she is getting it done! Above: One of my Elk photos! And of course, above that Regina and I talking on the podcast! aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo FSR Webpage on Financial planning for life with Sarc: https://www.stopsarcoidosis.org/financial-assistance-support-for-those-living-with-sarcoidosis/ #Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/ The New FSR Initiative https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
Los gigantescos sarcófagos de piedra de una tumba oculta esconden la clave de una antigua religión egipcia. Una mina subterránea se convierte en el hogar de los documentos más secretos del mundo. Salas de tortura tras las rejas de la prisión de Alcatraz revelan una horrible existencia para los reclusos indisciplinados. Habitaciones secretas y pasajes ocultos en el interior de una humilde casa de campo salvan vidas en su camino hacia la libertad.
1. Sacro + penia “Muscle” + “poverty” loss of muscle tissue as a natural part of the aging process. 2. Sarc + oma “Flesh” + “tumor” a malignant tumor of connective or other nonepithelial tissue. 3. Sarc + phagus “flesh/muscle” + “eating/consuming” (preceded it was the meaning “glutton”) a stone coffin, typically adorned with a sculpture or inscription and associated with the ancient civilizations of Egypt, Rome, and Greece. 4. Sacromere “muscle/flesh” + “part (meros)” a structural unit of a myofibril in striated muscle, consisting of a dark band and the nearer half of each adjacent pale band. 5. Sarco + lemma “Flesh” + “husk” the fine transparent tubular sheath which envelops the fibers of skeletal muscles. 6. “Auto”+ “phagy” “Self” + “consuming” the body's way of cleaning out damaged cells, in order to regenerate newer, healthier cells. 7. Phagocytes “Phago” “cytes(kutos)” = vessel Cyte refers to a type of cell cells that protect the body by ingesting harmful foreign particles, bacteria, and dead or dying cells 8. Marco - phage “Large” + “eating/eater” - a large phagocytic cell found in stationary form in the tissues or as a mobile white blood cell, especially at sites of infection 9. Actin - From Ancient Greek ἀκτίς (aktís, “ray”), based on the shape of the filament formed, and the English chemical suffix -in. 10. Myosin - myo- (“relating to muscle/flesh”), from Ancient Greek μυός (muós), genitive of μῦς (mûs, “muscle”) + -in, the english chemical suffix mentioned prior. Actin and myosin are both proteins that are found in all types of muscle tissue (aka sarcomeres = actin + myosin). Myosin forms thick filaments (15 nm in diameter) and actin forms thinner filaments (7nm in diameter). Actin and myosin filaments work together to generate force. 11. Nanometer - one billionth of a meter. prefix nano- (from the Ancient Greek νάνος, nanos, "dwarf") with the combination of the name metre (from Greek μέτρον, metrοn, "unit of measurement"). 12. Cytopenia (“cyto” + “penia”) “cell/vessel” + “poverty, deficiency, lack of” A deficiency in the production of one or more types of blood cells is called cytopenia. This condition may be caused by liver disorders, poor kidney function, and chronic inflammatory diseases. 12. Thrombocytopenia (thrombo-cyto-penia): Thrombocytes are platelets, and thrombocytopenia is the condition of having an abnormally low platelet count in the blood. “thrombo(to clot/to lump)” + “cyto(vessel/cell)” + “poverty, deficiency” --- Support this podcast: https://anchor.fm/liam-connerly/support
La veneración del toro Apis está atestiguada, según la Piedra de Palermo, desde la Dinastía I. Fue adorado en Menfis, mientras vivía, como la encarnación del ka de Ptah, dios creador, pero al morir se le asimilaba a Osiris, el dios de la resurrección. Se le llamó «El heraldo de Ptah». Los enterramientos rituales del toro Apis tuvieron su apogeo tardíamente. Al morir un toro Apis se iniciaba un largo y complejo ritual, el cual permitiría al toro renacer. Estos toros sagrados fueron enterrados en sarcófagos, elaborados con bloques pétreos monolíticos. El Templo de Dendera, dedicado a Hathor, diosa del amor y la fertilidad, es el edificio principal de un conjunto de construcciones situadas dentro de un recinto amurallado. Está localizado a unos 2,5 km al sudeste de Dendera, Egipto.
Sarc Fighter: Living with Sarcoidosis and other rare diseases
Sarcoidosis patient Kristi Hedge is just beginning her journey with Sarcoidosis. Listen in as she details how she started feeling poorly. After multiple doctor visits they discovered she had a serious case with Sarc involvement in multiple organs. Show Notes All about the Summit: https://www.stopsarcoidosis.org/summit-2022/ Contact Mindy: mindy@stopsarcoidosis.org How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/ Want to learn more about the clinical trial for efzofitimod? https://atyrpharma.com/patients/clinical-trials/ aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american The New FSR Initiative https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
Sacro + penia - muscle loss over time, age, loss of marco/micro nutrients “Muscle” + “poverty” Sarc + oma “Flesh” + “tumor” Sarc + phagus “flesh/muscle” + “eating/consuming” (preceded it was the meaning “glutton”) Sacromere - a structural unit of a myofibril in striated muscle, consisting of a dark band and the nearer half of each adjacent pale band. “muscle/flesh” + “part (meros)” Sarco + lemma - the fine transparent tubular sheath which envelops the fibers of skeletal muscles. “Flesh” + “husk” “Auto”+ “phagy” - the body's way of cleaning out damaged cells, in order to regenerate newer, healthier cells. “Self” + “consuming” Phagocytes - cells that protect the body by ingesting harmful foreign particles, bacteria, and dead or dying cells “Phago” “cytes(kutos)” = vessel Cyte refers to a type of cell Marco - phage - a large phagocytic cell found in stationary form in the tissues or as a mobile white blood cell, especially at sites of infection “Large” + “eating/eater” Actin - From Ancient Greek ἀκτίς (aktís, “ray”), based on the shape of the filament formed, and the English chemical suffix -in. Myosin - myo- (“relating to muscle/flesh”), from Ancient Greek μυός (muós), genitive of μῦς (mûs, “muscle”) + -in, the english chemical suffix mentioned prior. Actin and myosin are both proteins that are found in all types of muscle tissue (aka sarcomeres = actin + myosin). Myosin forms thick filaments (15 nm in diameter) and actin forms thinner filaments (7nm in diameter). Actin and myosin filaments work together to generate force. Nanometer - one billionth of a meter. prefix nano- (from the Ancient Greek νάνος, nanos, "dwarf") with the combination of the name metre (from Greek μέτρον, metrοn, "unit of measurement"). Cytopenia (“cyto” + “penia”): A deficiency in the production of one or more types of blood cells is called cytopenia. This condition may be caused by liver disorders, poor kidney function, and chronic inflammatory diseases. - “cell/vessel” + “poverty, deficiency, lack of” Thrombocytopenia (thrombo-cyto-penia): Thrombocytes are platelets, and thrombocytopenia is the condition of having an abnormally low platelet count in the blood. - “thrombo(to clot/to lump)” + “cyto(vessel/cell)” + “poverty, deficiency” --- Support this podcast: https://anchor.fm/liam-connerly/support
Sarc Fighter: Living with Sarcoidosis and other rare diseases
Garrie Farrow has been fighting sarcoidosis for 15 years, and maybe longer. It has spread from her lungs to other parts of her body including her ears. Yet she is still working - and still fighting. In fact she spends a great deal of time helping other Sarcoidosis patients as well. In Episode 62 of the Sarc Fighter podcast, Garrie shares the story of how sarcoidosis started out in her lungs, how doctors may have mishandled the early diagnosis and how sarc has had a tragic impact on her family. Show notes Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2 Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com The following is a web-generated transcript of my interview with Garrie. Please excuse any spelling or punctuation errors. jc Welcome back to the Sarc Fighter podcast. And joining me now is Gary Farrow, uh who plays many roles within the foundation for Sarcodosis Research as a volunteer and is coming up on 16 years as a Sarc survivor. Garrie, welcome to the podcast. Garrie Farrow: Thank you. Thank you. So much for having me today. John Carlin: So you said it's 15 years plus almost 16 years. And you knew the anniversary date, didn't you? Garrie Farrow: It's actually uh August. I started getting my appointments in April. So for me, April is the anniversary. But I didn't get the official diagnosis until August 16 years ago. John Carlin: 16 years. That's a long time. And I want to hear about when did you first know something was wrong? Garrie Farrow: Honestly, I knew something was wrong 20 years ago. Um uh I have a thing that I love, cute shoes and purses, and I have these fantastic boots that I love to wear. They were the greatest thing ever. And my feet and ankle started to swell. And um I used to play basketball in high school, so I'm used to ankle Springs. I know what my feet and ankles will do, but this was not normal. So probably uh about four or four and a half years in total going to different primary care doctors. And I am um a taller, larger woman. And so I've always been told, well, you need to lose weight. Like, I exercise every day. I'm not losing any more weight. But they're saying the reason my feet and ankles were swelling was because of the weight. So I went and lost more weight. Still couldn't wear the shoes, moved to uh a different city, found a uh new primary care position. Actually, my second one here in Tallahassee was the one who went, this is not normal. You are uh about 30, 31 at the point. This is not normal. Let's send you for a chest Xray. And that's how my journey officially started. John Carlin: Wow. Chest X. You ankles hurt. So the first thing they do is send you for a chest X ray, which wouldn't seem intuitive, but I guess the doctor must have been thinking pulmonary sarcoidosis. Garrie Farrow: Then she kind of mentioned she goes, It could be your lungs, it could be your heart. She goes for your feet and ankles be swelling. There's something vascular going on, and we don't know why. She goes, I'm listening to just using. I'm listening to your lungs. It sounded fine. You're exercising, um you're uh not complaining. You have any shortness of breath. So let's figure out what's happening with you. John Carlin: Okay? Was that conclusive or was that just the next clue? Garrie Farrow: The chest X ray was the next clue. They um realized at that point because you could see my lymph nodes on X ray and the lungs looked suspicious. And at that point, I was sent for a media style oscopy. Basically, biopsy ended up with a brand uh new scarf. And that's where they definitely confirmed that, yes, this was circadosis because after the chest X ray, they said this could be leukemia or Sarcodosis. The way I remember it was, I heard leukemia and possibly sarkidosis. And the leukemia scared me because I hadn't uh heard of soccer doses before in any major detail other than burning Mac. John Carlin: Right. So after they figured out it's sarcoidosis with the lymph node biopsy then. Did they start with the normal prednisone routine? Garrie Farrow: No. I um was seeing a pulmonologist local to my city, and I was told stage one, that four stages. And since I was at stage one, I had no other symptoms happening. There was no reason for me to go on any medications. And that if I ever started coughing or becoming short of breath while exercising, to basically come back. And I had one appointment a year later, just everything's still the same. But at no point was medication even talked about. I did go back to my um primary and asked, okay, now I've been diagnosed with Psychnosis. What does that mean? And she told me she didn't know. She goes, I could tell you this much of what I remember from medical school. I can't answer any of your questions. Go back to the surgeon and went back to him. And it was, yeah, you have stage one, but that's good because four is horrible. You're at one, so there's nothing to do. My um current pulmonologist, who specializes in Sarcodosis, uh she said, no, stage one is no better uh than stage four. You had symptoms, you just weren't coughing. She goes, Your lungs did not look good. There should have been some treatment started then, but that took um another shoot. I think it probably was probably about another three to four years before I started any official treatment. John Carlin: That just amazes me. And I'm curious about the um stage one, stage two, stage three, stage four, which is the terminology that we're used to hearing for cancer patients. And I've heard other patients that I've interviewed on the podcast talk about it a little bit. No one has ever uh used that term with me. Can you describe the difference between stage one and stage four? Other than that, it's worse. Garrie Farrow: Yeah. What I was told originally was that, yes, my lungs um were cloudy, but they were not completely infiltrated. And you could see my lymph nodes on Xray. Stage four is pretty much you're on oxygen. The lungs are completely Gray uh and looks like um ground glass completely covers the entire lungs. At stage four is how it was described um to me initially, that each stage, your lungs get a little cloudier, a little bit more ground glass until it gets to the point where you're not able to breathe. What I've been told uh recently and confirmed with more research is that, yes, the um stages do impact how the lungs appear, but you could be on oxygen at stage two. You could be um walking around not fine, but without oxygen uh at stage four, it's just showing what the impact on your loans looks like when you're just trying to look at the X ray or the MRI or CT. Go um ahead and actually, stage one, I believe, only includes the link notes and um any of the others only impact just what the ones look like. John Carlin: So you and I are both on a number of committees with the foundation for Sarcodosis Research. And uh what I'm hearing and maybe, you know, maybe you don't. But what I'm hearing is this stage one through 4 may be just reserved for pulmonary patients because everything you've described is lung involvement. Whereas with cancer, my understanding is when you have stage four cancer, let's say it starts in your kidneys or whatever, it then has spread to other parts of your body and it's metastasized. So when we talk about stage four with sarcoidosis, we're not talking about it spreading to other parts of your body, even though that can happen. But that's not what the stages describe exactly. Garrie Farrow: Which I find interesting because it would make more sense that they actually classified it that way as they do in cancer, because technically, thankfully, due to one medication, my lungs are clear. My lymph nodes have shrunk in size from being really big to not being outfit. But I had other um organs being impacted by sarcotosis. So to me, following the cancer way of being, I'm probably more of a stage three just because I uh have multiple organs impacted by sarcosis. But currently it's only for lungs. John Carlin: Got it. All right. And is it still currently after almost 16 years, is it still just in your lungs or has it spread? Garrie Farrow: It's spread. And it actually took about ten years um to spread. John Carlin: Um. Garrie Farrow: I noticed some skin issues, went to my local dermatologist. And first I was told Eczema, then I was told Psoriasis, then I was told I had both went to sarcosis. Um dermatologist. No, this is sarcoid. That's what this is. And so, yeah, the past five years. So past five years, skin, eyes, bones. And now um I lost hearing in the left ear. Um and that's on immune suppressors. Um. John Carlin: You said after about four years, a doctor said, oh, no, you need treatment. Garrie Farrow: Yes. John Carlin: What treatment did they come at you with first? And how has that progressed? Garrie Farrow: The lovely steroids. The lovely steroids. I was on 60 milligrams for um about a year and a half. A little under. And um that, of course, weight gain, prediabetic, hypertension, um you name it. The moon face. All of it was taken off of that because of the impact. But at that point, there still was not a lot of discussion about new medications. And it was pretty much okay, your lapse look good. We're just going to kind of watch you. Then the eyes started, well, the skin. So then it was steroid injections directly into the skin and steroid creams, which thankfully um no over whole body and past. Then when the eyes and the bones kicked off, that's when I was put on methotrexate. No steroids at that point, thankfully. But then when the um bones kicked off, that's when they said, okay, I started low dose steroids and about five milligrams for three years. That pushed me over the edge with the diabetes. And let's see, um at that point, I think it was year two is when I went back, because by that point, I'm taking metformin and even though they said five um milligrams of steroids you shouldn't be gaining weight. I probably took uh 60 mg. I gained £80. Finally, after not being on steroids for a while, I had lost about 40 started the low um dose and they said you should be fine. Five milligrams is not going to impact you. I probably ended up gaining back 30. And so after year two, I said, okay, look, I need to switch because steroids and I are not working out. You're telling me I need to lose weight? I'm doing the things I need to do and yet my weight is not going in the right direction. It's still keeping up. So that's when I was taking off the steroids and put on the flutter mine, I think I believe I'm saying that correctly, but yeah, and I had to take off methotrexate and switch to uh Humera, which didn't work because of the bones. And I'm now doing rimicate infusions um or Influx map infusions with the Lip global cage. John Carlin: Is that working so far? Garrie Farrow: Actually uh going June to get repeat X rays of my fingers. Uh they showed no further damage is what it was last year. So we're hoping it remains the same now. John Carlin: We've kind of just jumped right to I want to hear more about your eyes and your bones. Sure. When you have sarcoidosis uh in your bones, what does that look or feel like? How do you know it's there? What is the deal? Garrie Farrow: I know it's kind of hard to see on uh camera, but the fingertips of these three fingers are actually about now only about two times the size of the fingers on this hand. And uh what started off as just a finger swelling then turned into I would go to pick up a pen or I'd go to pick up my purse or anything and um I could literally feel something crunching in my fingertips. And I was just like weird um because every once in a while your fingers might pop or you crack something. But I went, no, that is literally in the fingertips. I went to my local PCP and he told me it was finger clubbing due to socketosis and lack of oxygen. My sister actually has or has finger clubbing. She was diagnosed after I did because I pushed her. And so I've seen what finger um clubbing looks like and all her fingers were impacted. John Carlin: I've never heard that word before. Finger clubbing. Fingers look like little clubs. Garrie Farrow: Yes. I don't know if you can kind of tell on camera. You see how this one's more rounded than the other? John Carlin: Yeah. Garrie Farrow: It becomes very bulbous is the other word that they like to use. And your nail bed actually changes shape where instead of being just if you look at your hands, just regular nail bed, they actually expand because since the tip of your finger is getting bulbous, your nail bed has to go with it. And it actually started splitting because my nail bed couldn't keep up with the growth of the finger. So it was splitting. And as I initially pushed um back because I told him that every time I come to see you or see my specialist, my oxygen gets recorded at 98%. 99%. I'm not wheezing that I'm uh aware of, and nobody's told me otherwise. And I've had breathing tests. And if that was the case, all of these should be bulbusy and look funny. It is literally. These three went to see my Pomodologist, and I was on methotrexate. And so they were really concerned about any of the other side effects that method track state could have. And she goes, okay, is there anything else going wrong with you? Because your loans look great. I don't normally see patients like you because phenomenologist. So I'm not used to seeing healthy loans anymore. Anything else going on? And I went, look. Uh and she goes, that is not normal. And I haven't seen that with methotrexate patients. Let's send you for a hand Xray, which then worked into a whole body bone scan. And I now have a Rheumatologist because they realize that uh on Xray, my um fingertips, all of them, actually. But these three are the worst. My body has attached the bones um to the point to where it is broken down and my body is reabsorbing the bone. So the reason they're swelling is because um there's fluid, and that's what causes the swelling. And I actually have four toes involved as well. But all of them, you can tell all of them have been attacked. It's just these three were hit the worst because I dropped a box on them while moving. John Carlin: Sorry, is it painful? Not dropping the box, but I'm just walking around every day with your toes. And does it hurt? Garrie Farrow: Yes, it depends upon what I've done that day. Um some days are worse than others. I am a trainer, so I constantly um typing. And I love playing video games. So playing video games, typing certain things. Um there are days where I don't want to use my fingers. It's not worth it. Or I have become very adept at using my thumb and my ring finger on the right hand because um it's not sensitive to touch per se, because doing this does not hurt. But actually going to grab something unless I can um figure out a way to grab it down here. Think of the worst bruise um that you've ever had. You'll get that you hit it just right, and it doesn't really hurt until you get it in the right place. That's what it feels like. John Carlin: Okay, let's talk about your eye. Garrie Farrow: Yes. John Carlin: What were your symptoms initially? Garrie Farrow: Just a lot of redness. Tallahassee knowns for pollen. Uh and so I just put it off that it's the pollen. Um it is the green season, and it's uh a lot of redness. And then the conjunctive not conjunctivitis, but outside of your eyes were constantly inflamed, like, felt like I had dirt in them. And again, pollen. I just pushed that off. It wasn't until I have glasses that actually with a tent. I just lost the name of it that you go outside. The sunlight and your lenses. John Carlin: Yeah, they get darker. Yeah. Garrie Farrow: I walked outside. Even with that on, literally stopped in my tracks, uh shut my eyes, and was like, oh, my God, the Sun's too bright. My eyes literally hurt. The only way I could um describe it is like a shooting pain through my eye. And I stood there just going, oh, my. Okay, this isn't normal. John Carlin: When was that? How long ago was that? Garrie Farrow: That was probably about uh six years ago. Yeah, about six years ago. Um and again, I went to my local Icare uh provider, and it was like, yeah, this is arthritis. And was um prescribed steroid drops. Then it continued, and I was diagnosed with Uvitis and ended up getting referred to an ophthalmologist uh because I kept going to my optometrist because, of course, my glasses. And they were like, yeah, this is a Sarcodosis issue, not just, you know, you have recurring eye infection. And so that's how the eyes joined up. John Carlin: Wow. Is that controlled? Garrie Farrow: Currently, yes. Thankfully, with the eyedrops, uh uh I think I was on the eyedrops for about a year, and I go back in right now, thankfully, because the last test, uh my last exam came back fine. I'm set to not have to see them for a year, but when my eyes are unhappy, I probably see the ophthalmologist about every three months. And drops and tests I do because of the last one, has a beginning of a glaucoma in one eye because of the recurrent flares in my eyes. So we're kind of watching that. John Carlin: You said the magic word flare, which is what a lot of Sarcodosis patients fear. Garrie Farrow: Yes. John Carlin: You get everything under control, and then all of a sudden you wake up one day and things aren't right, and the Sarcodosis has become active wherever it is in somebody's body. When you just use the word flare, are you talking about flare, as in bright light hitting your eye or a flare up of the Sarcodosis in your eye? Garrie Farrow: Flare of the sarcidosis in my eye. Uh for me, the paint, it feels like a flare of a light in my eye, but my body has um flared itself. There's something in my immune system that has gone into overdrive and done its attack like it usually likes to do. John Carlin: You mentioned Humera, and that didn't work. You said, because of the bones, I think, is what you said. What is the connection between Humera and bones? Garrie Farrow: Actually, none. The only reason I was put on humor was an experiment because um the methotrexate obviously worked perfect for the lungs. But because my bones were starting to go, she was like, okay, we can't put you back on steroids, obviously. So what can we do? And at that point, um Humera. Uh it wasn't officially approved for off label use, but it was showing some impact on the immune system with patients that had Crohn's disease um and really severe, I believe IBS, um and I apologize if I'm incorrect on that one, but it was definitely used in Chrome's. She said, okay, let's try something, because obviously your body is still in overdrive. Let's find a different method to shut off uh your immune system. Humera was picked because there uh was another medication, and I'm blanking on it right now that again, it was another off label cancer medication, but there were so many other side effects, and one of them because of uh where my weight and my diabetes were. Uh she was really hesitant to use that one. So that's why Humor was used. And it was just a test to see. Would it help with my fingers? Because at this point, my options were limited. John Carlin: And uh you ran it, what, for six months? Garrie Farrow: I've been on actually a year because they said it's six months just to figure out if things are going left or right. And the first six months was to make sure my loans did not reengage, for lack of a better word, be changed in how they were going. The bones, after um six months at least, didn't show further damage. They were like this, and I'm never going to regrow the bone, but at least it didn't look like it had uh gotten worse. The reason I had to switch from Humera to the influx of Infusions is the bones remained where they were, but then I lost um the hearing in the left ear, and they're like, okay, so obviously something is not quite right again. So Humor kind of stable things, um or at least shut up my immune system enough, but not enough. So that's why I'm on infusions. John Carlin: Let's talk about your ear. What happened there. Garrie Farrow: Again? My wife and I woke up one Sunday morning with a sinus infection. I'm sorry. Through all of this with the whole eye things, I've had problems with my sinuses um um for quite a while, but it was after the eyes I ended up Sarcodosis caused me to have polyps um inside my nose and in the back of my throat had the polyps removed. They're like, yes, this is definitely sarcoidosis, but you're already on all these other medications. That's um what we would have prescribed for you. So call us back if something changes. I woke up one Sunday with a very bad sinus infection. Um the usual signs and symptoms. And that's um when I woke up that Sunday morning and my boyfriend asked me something, but he was on this side of me and I did not um hear him at all. And he thought I was mad at him. So it was later on the day, um throughout the day, he was like, okay, what did I do to make her mad at me that she wouldn't respond to me? And it wasn't until later on that day that he um asked, I said, I didn't hear you. And so he went over to that site and said something I'm like, I literally can't hear you. I had the same day appointment Monday. And they were like, oh, that's um your sinus infection. Once your sinus is clear, here's an antibiotic. Your hearing will return three weeks later. Found out um my ear hairs are fine. I have no tumor pressing on the nerve. Further research. It's just one of the uh symptoms that you get. Single sided hearing loss caused by sarcosis. John Carlin: That is just amazing to me. Garrie Farrow: Yeah. John Carlin: So you're walking around your job is you are a trainer. What kind of training do you do? Garrie Farrow: Software. Technically, the official Titles application is Trainer. Well, the full name is Electronic Health Record System. I focus more on the practice management side, but when we do major upgrades and releases, both of us end up training the doctors, the nurses uh and receptionists on how to use our system and what changes come into being. John Carlin: You have the sarcoidosis all over your body. How does that impact your ability to just live your life day to day? Garrie Farrow: It has an impact. And of course, the medication side effects play a greater role in how far I do things. The pain, like I said, it's preventing um me from I used to knit as well. I don't do that anymore because my fingers get in the way. And then eventually after time, it really hurts too. Nit I saved my typing for work so I don't play online um video games as much as I used to. Just because I need to be able to type at work. Just anything, to be honest with you, um gripping a jar to try and open it. So I bought a jar opener hearing AIDS so that I can hear on the left side. Um because the other part I realized with me not hearing, I was starting to lose how well I was enunciating words. Uh i won't call it slowing my words, but I was losing just um how well I was speaking. I parse um out my time, to be honest with you, if I know I'm going to take a trip, I don't do much before the trip and I'm definitely not doing a lot after it because I'm just that tired. And when I say trip, my doctors are in Gainesville, which is about a two and a half hour drive from where I am. And going to see a doctor is a trip. Because if I do it in a day, uh when I come back, I'm not going out to eat. I'm not doing what I usually do. John Carlin: You're not talking about going to Paris? Garrie Farrow: Yeah, I wish. I really wish. No, I'm just going to see my doctor. My father lives two and a half hours in the other uh direction. So even just that most people it's just a day trip. No, just a day trip is a lot of energy. John Carlin: The fatigue is real. Then. Do you take a lot of naps? Do you need the naps? Do you need extra sleep at night? Garrie Farrow: Yes. Problem is, you get to that point where you're so tired. Even though you lay down, you can't fall asleep certain days. I'm like that I've laid down. I would uh love to go to sleep, and I'm just that tired of where I can't. But yeah, naps are real. Naps are required. John Carlin: Wow. Um sorry. Something's going on with Zoom on. My end used to be if there's just two people, you could talk as long as you wanted. And it's now telling me that I've got that 40 minutes time limit that you used to only get when there were more than two people. And I'm afraid it's going to time out on me. I've still got a lot more things I want to ask you. Speaker UNK: Sure. John Carlin: Let's end this meeting and go back um and click that same link again and see if it'll let us start another one. Speaker UNK: Absolutely. John Carlin: And if it doesn't, I'll go in and I'll get another link and send um it to you. Just watch your email. Speaker UNK: Okay. John Carlin: All right. So I'm going to end it and then let's click the link and see if we can rejoin. Speaker UNK: Okay. Perfect. Garrie Farrow: Okay. John Carlin: All um right. Garrett, you're doing a lot of work with the foundation for Sarcoidosis Research, as we mentioned just a moment ago. And one of them is you're on the Women of Color committee. For people who aren't up to speed on that, what is that? Committee's responsibility? Garrie Farrow: Sarcasm actually impacts the African American women. I was going to African American community, and it does. Uh but women are more impacted by the disease that if there's going to be a higher hospitalization rate, higher mortality rate, it impacts African American women about up to 13 times more often than African uh American men, even though they are impacted by the disease. Unfortunately, my sister died um from her circuit is three years ago. That's um what made me um join FSR. John Carlin: We buried the lead. I'm so sorry. Garrie Farrow: That's um okay. No, actually, it's not that I don't talk about it, but it's really uh the reason I joined FSR and why I applied in the first place, because um of her experience, um the difference between her experience and mine. When I saw the Women of Color committee come up, that really made me go, okay, I need to be a part of this because of her experience and mine and just in general uh and talking with different African American people and some of our residents and going um to see a physician, I don't want to say it's lack of exposure um to certain diseases and a lot of us are more prone to I'm always tired. I don't feel well. I don't have time to go to the doctor. So he's just going to tell me or she's just going to tell me what I already know. So I'm just not going to go. And I wanted to be a part of that committee to help get more word out there that this is not a disease, that you can just be like, oh, it'll be fine. I'm tired. I'll be tired tomorrow. I'll be tired next week. Let's just wait it out. Um and it's this disease. You cannot just wait. The longer you wait, the more damage that's done. And you can't recover from that damage. Once it's damaged, it is damaged. So that's what made me decide to join up. John Carlin: What was your sister's name? Garrie Farrow: Sharon. Sharon. John Carlin: And she had pulmonary sarcoidosis. Garrie Farrow: Pulmonary and skin. She never went in and got diagnosed for skin, but the spots on her face, um like you have the exact same thing. Go see a dermatologist. Don't have time, don't feel good. From the city that we were from. Um and her doctor uh only used prednisone. Steroids was their fallback. Even when with my methodrest state, when I realized what it was doing for uh me, I was on the road from Gainesville back home, calling her. Go see your doctor, get methotrexy. I promise you, it impacted her lungs away. I'm not sure if it was just due to time. She was a year and a half older than I was, so I'm not sure if it's just due to age, just due to um if Sarcodosis had been passing or a whole lot longer. Um so, yeah, by the time they caught it, by the time with steroids, her lungs couldn't take it literally. At the end, they said that we could um not use any more medication to get any of the fluid off of her lungs. Her lungs are filling up faster than we can get it off of her. And that's what actually killed her. John Carlin: Oh, that must have been so sad. Garrie Farrow: It was devastating on the family, because that's not what's supposed to happen. As my father said, you're not supposed to bury your children. So it was hard. John Carlin: So you stepped up and reached out to the foundation for Sarcodosis Research, even though you had been dealing with Sark yourself for a good long time at that point, yes. And so now you are a fellow advocate, and our role as advocates is to help other Sarcidosis patients. Garrie Farrow: Yes. John Carlin: You're on the Women of Color committee. You're on the patient advisory committee with me. And are uh you a Navigator as well? Garrie Farrow: I've um applied to be a Navigator. The application is uh closed in a couple of weeks, I believe. John Carlin: Okay, so what does it feel like these days when your job is outreach and counseling other people with Sarcoidosis, and what do you say to them? Garrie Farrow: It's a weird sensation, to be honest, because um it's not where I saw my life going. Even though I'm a trainer, I'm an introvert. And training for me is easy because I'm talking about the software. It's not talking about me in working with FSR, doing the advocacy. Um it's a different place for me to be because I'm talking about yes, I'm talking about the disease, but I'm talking about my experience with it. So it's pushing me outside myself in ways that I'm not usually used to, even though I do speak publicly for a living. So it's a different place. But I have to um admit that I do like it because getting the word out about psychedosis helps. Unfortunately, my coworker, I think she's okay with it because um I was so vocal about it at work. She was running into some health issues and was diagnosed with pulmonary psychnosis end of last year. Yeah. And it was just like, oh, okay. I'm sad that you're part of my club, but I'm glad you got diagnosed. Right. Because otherwise she was having some interesting things that kept coming and um went and had a biopsy. John Carlin: So many people say they don't know anybody else that has sarcidosis. You had a sister and now you got a coworker. Garrie Farrow: Yes. John Carlin: It's amazing. So your coworker is doing okay? Garrie Farrow: Yes. She's currently on methotrexate, and I think the last time they did uh the CT scan, things were looking good and they were going to keep her on the same dose. But she's in the first six months. I believe so, yeah. She's got that the milestones to hit before you can really say things are going well. John Carlin: Is she also an African American woman? Garrie Farrow: No. John Carlin: Okay. So it uh just keeps on coming then. But I'm sure that she was curious because she had you as a resource. Garrie Farrow: Yes. And it was one of those kind of different um conversations because it's not like she works in my Department, but she's not like a close coworker. So it was one of these we had to kind of talk to you for a second. And she goes, yeah, I'm going in. And I don't know quite what to do or what to expect. So I put on the FSR hat. So the first thing you need to do is go out to the FSR website, go to stocksoccervices.org, have your husband go out there as well, because your life is going to change, even though you haven't been feeling well and it's already been changing. If any medications are involved, then please don't do steroids. Do some, see what you can do. Your life is going to change and how it impacts you and your family. And she's got grandchildren. Um and you need to do this research now and don't think it can only stay within the loans. You need to think whole uh body. Don't just discount. Well, I'm older. This must be arthritis pain. It's like maybe it is, maybe it isn't. John Carlin: Uh are you doing support groups or anything like that? Garrie Farrow: I'm not. I thought about it, and my introvert little Gremlin was like. John Carlin: Um. Garrie Farrow: Uh I thought about it and looked and um I think this is the introvert part. There's nothing local to me. And so I was just like, okay, I never um done the next step. John Carlin: I was down the road a little bit with starting. We were going to have an event and maybe have a support group grow out of that here in my region in Roanoke, Virginia. And then the pandemic hit and everything got canceled. And that was also about the time I started the podcast for me. I kind of feel like the podcast is my support group because people are listening to you right now, and they're hearing what you're saying. They're hearing what you're going through. And at least if they're looking for answers, they're hearing some of what is normal if there is such a thing with Sarca Dosis. So they may have similar symptoms or similar issues with the prednisone or with the methytrexate or with the ramicade you've mentioned all these things are things that I've been on as uh well. Initially. I'm just curious because you um said for a long time you didn't reach out to FSR and you wrote an op Ed for your local paper, and you said you didn't really research Sarquidosis at first. Was it because you just didn't want to know? Or you just kind of trusted your doctors to know what needed to be known and you were going to take your medication and go on with your life, go back to that time and think what was going on with you then? Garrie Farrow: I trusted my doctor in that stage one. And again, my problem was I was so focused in on leukemia. That was my fear. And I had come home, and I found one dot Gov website that mentioned sarcoidosis and lung involvement. I was like, okay, but leukemia was huge. So once I got that diagnosis of sarcoidosis, I was so relieved that it wasn't leukemia that uh I didn't push further on myself or the doctor. Because, of course, now hindsight being 2020, even stage one, I um should have said, Excuse me, are we sure I don't need to do something else? Anything else. I didn't even think about getting um a second opinion. And even the only thing I will say, thankfully, when I went back to um my primary and she told me she didn't know anything about Psychro dosage and couldn't answer any of my questions and go see the surgeon, I ended up switching to an internist who knew about Sarcodosis. Uh but even then again, I put that trust in the physicians, um didn't educate myself on it until things started changing. John Carlin: Yeah. And then all of a sudden, you jump in. I hear the same thing from people that and it can be kind of scary. I've been on some of the online threads where people just say such terrible, awful things about what's going on with Sarcodosis, but they're not saying it in a reasonable, thoughtful way, which isn't their job to do that. But I just didn't want to see it, and I didn't want to know. Terrible disease, terrible medication, blah, blah, blah, blah, blah. And then it would just stop. There wasn't any further explanation because people were just typing responses to one another, almost like reading a Facebook thread on a controversial issue, and people were just going after each other. Garrie Farrow: And nobody's talking about that. Okay, yes, sarcoidosis is not a fun disease, but there are ways to function that yes, your life has changed, but this is not this is not the end of it. There's other things that you can do. Nobody likes to put that on the thread. That's not as interesting when you're looking at posts, right? John Carlin: Yeah. People just have to be so sensational with their posts, but they're probably on that thread because they're either bored or mad or both. And so you're seeing the worst of I just stopped looking, honestly. But I found that I probably should have looked further faster. And I'm hearing you say the same thing. Garrie Farrow: Absolutely. And I'll admit because I was surprised that I didn't know how long um FSR had been around. That when I started searching for sarcoidosis. Originally, I only got the Gov um sites, Medline, WebMD, and I just lost the name of the other one that has a symptom um checker on it that no doctor loves. And uh I did not start finding out about FSR until I probably was starting to search. Every week I would go out and just um Sarcodosis, pulmonary Sarcodosis. Let me see what I can find, because this is ridiculous, that I know it's rare. And at that time, I think it was 200,000 in the US were being affected. But there has to be more. There has to be more that this um can't be just this couple of sites. And luck was on my side and FSR popped up because I was starting to get to that point to where I think I've been doing that for about a couple of months. Uh i was starting to get frustrated because the information was always the same short little info or like you said, the posts that were just depressing me, making feel like, okay, I'm not going to die tomorrow, but I'm going to pass soon. I don't want to hear this anymore, uh but I found that it's our site. John Carlin: Right. Is there anything else you want to add to this conversation? I appreciate you kind of bearing your soul here with our listeners. Garrie Farrow: Honestly, if one person okay, not one. But if um more people would, if you're ever finding yourself going, okay, this is discounting your own symptoms and you're thinking, well, it must just be allergies, oh, I'm just tired. And I'm always tired. Sarcoidosis doesn't just impact the lungs. The um heart can be impacted. Your eyes, the skin, bones, you name it. It can um impact the body. And even with I don't have time, I don't have the energy. Just go to that one appointment and talk to your physician, um even if you're not the one having the symptoms. Everybody talks to their friends, everybody talks to their family. And you always hear that common issue with that family member, with that friend, talk to them, get them to go. Because even if it's not Sarcodosis, it could be anything and everything else they need to go in and be seen. And it's not to say that don't trust your doctors, um but if they tell you, okay, we think you have this or we have confirmed this diagnosis. Do your research go out there? The internet is huge. Yes. You're going to run into some information that's when you do more research just because you found one answer, you found one source you don't stick with just that one source. You look at everything as much as you can and get that knowledge for yourself so you know what you're going to have to live with and that helps better prepare you for your next office visit. John Carlin: Find a doctor that is a specialist in sarcoidosis. Yes, there are lots of doctors who may have one or two Sarcoidosis patients. That's not the same thing. Garrie Farrow: No, not even close to it. As you are well aware, Sarcidosis is so varied that there's a commonality amongst all of us. But how sarcadosis impacts you is different than how it impacts me and yes, it is a disease of granuloma but how your body takes that granuloma you really need someone who has a breadth of knowledge not just like you said, one or two Z is not enough knowledge for this disease, right? John Carlin: thank you for joining me on the Sarfighter podcast. Garrie Farrow: Thank you thank you for having me. I love listening to you. I've watched your podcast before so this is fantastic. This was fun. John Carlin: Great. Thanks. Garrie Farrow: Thanks. Bye.
Sarc Fighter: Living with Sarcoidosis and other rare diseases
Jack Boepple is a former Boston marathon runner. A dedicated Cyclist and a fisherman who disappears into the wilderness for a week every year with his canoe and camping supplies. But even all of that couldn't prevent sarcoidosis from attacking his heart. In Episode 60 of the Sarc Fighter podcast, Jack shares the story of how sarcoidosis knocked him back more than a few steps -- and how he never saw it coming -- even when he was in the hospital beating most of the tests. Jack Cardioversion image Show Notes: Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022 Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Below is a web generated text version of my interview with Jack Boepple. Please excuse any spelling errors. Welcome back to the Sark Fighter podcast. And joining me now is Jack Boepple Lives in Chicago and he's a fellow SARC fighter. Jack, welcome to the podcast. Thank you. Glad you to have me. So you reached out to me after listening a little bit because, • • uh, you have cardiac sarcoidosis. How did you first find out that something was not right with your heart? • • • • • • Um, actually, it was the event itself. So three years ago, March, • • um, I'm sitting on a couch • • • and I could feel • • some palpitations going on. And I put my hand on my chest and it felt like my heart was just rolling. • • So I asked my wife, can you just check my pulse? So she did, that looks fine. Then she put her hand on my chest and she's like, we got to go to the emergency room now because it was just doing all these flip flops. She could tell. She could tell there was something wrong. And I'm like, uh, • • I've had palpitations before. I'm fine. I'm just going to play through • • • • um. • • And so I didn't do anything. That was a Friday. • • And I woke up the next morning and I was still off. • • So I took a baby aspirin I sent a note to my primary, uh, provider, realizing through the portal, realizing she would not see it or address it until Monday. • • And then that day, we went for a long walk. We had friends over, smoked a cigar, had some wine, sundae, went for another long walk, came home, got on the rowing machine, rode for 45 minutes, and by rowing, actually felt better. Um, but I got a phone call on • • • • Monday morning from, um, the primary nurse. And she said • • everything you just described to me, you need to be in the emergency room right now. And I said, I don't want to go to the emergency room. So she made an appointment for to see the primary. And I saw her in the afternoon and, • • • um, she took an EKG • • and she used this very technical term • to tell me what she saw. It looks funky. I'm like, what does funky mean? Uh, so she's like, I think you need to go. I want you in the Ed. I mean, right now. • • And • • • • her office was like a 20 minutes ride from • • • • the, um, hospital. And I'm like, • I want to send you an ambulance. But you're not going to go, are you? I'm like, no, • • • • • I drove to the Ed, • • they checked me in, they did another EKG, and when I got to the Ed, they fast line me. Usually you have to wait forever. I got right in. They did another EKG, they said something's funky. Then they brought in a cardiac specialist. He said the same thing. So they kept me for observation. • • • And the next day, they • • • • • • • did an EKG and they said, based upon those results, we either going to send you to stress, uh, test, or we're going to do an angio on you, uh, angiogram. And I'm like, come on, • • • • • bring on the stress test, because, • • • • um, • I work out quite a bit. • • • • • • • Um, • • • • • • • • • • • • • • • • • • • • I'm losing the term, but all my blood numbers come back great. • I mean, there's nothing wrong with cholesterol. My cholesterol numbers are off the scale. Great. • • • • • • • • • • • I'm like, come on. There's nothing wrong. So then they • • • decided, um, they're working to do a stress test. They're going to do the angio. And I got someone asked me, are you ready to have stents put in your heart? Like, what are you talking about? • • And I'm like, sure, but you're not going to find anything. And so they, • • • • • um, • • • bring me in, I do the angio, and I come out of it, and they're like, yeah, you're right. There was no blockage. Nothing. I'm like, yeah, I told you that, right? But we still want to hold you. And now it's about 400 in the afternoon, and my wife's been there all day. And • • • • I say, go home. Go get some lunch, go take a shower, go feel better. • • And • • • • • in the room talking to a nurse, and next thing, there's four more nurses flying in the room, • and they're saying, we got to go to ICU. I'm like, what? We got to go to ICU now. Wait, you're feeling fine? They've done the angio. • • • • • • • • • I know, but the listeners don't know yet. • • • But you and I live, uh, in a parallel • • • • lifestyle, uh, with respect to the way we work out. You were biking 120 miles a week. You've done a half iron man. You are on, uh, your rower all the time. So you're not just, like, a kind of standard walking around fit guy. Fitness is your lifestyle. • • • Absolutely. • • • • • • • • Not only is it done for physically, but you probably can relate to this, that it's a mental release. And so when you're doing you're on your bike or you're working out, all of sudden a you're solving all the problems you're trying to work through. Yeah. So the nurses come rushing into the room, you're sitting up saying, okay, something's funky, but I'm killing it on all these tests. And they keep accelerating the level of care, • • • • • right? All these nurses are running around me, and I have one nurse just staring at me, and I'm staring at her, and she goes, hello. And I say, hello back. And she jumps backwards. • • So apparently I found out later that • • • • I think my heart rate is, like, • • • • 100 and $8200 something very high. • And apparently, when it's that high, um, you're coding. And so they're not used to anybody • • being conscious when this happens. And so • • • • they're willing me down to ICU. I'm fully conscious of what's going on. They get me in there, they hook me up, and, • • • • • • • um, • • • they're pumping me full of all these • • • drugs, um, to try to get the heart rate down, Amyotarone. They just give me an IV of it. They're just trying to do this. • • • And after about 8 hours of my heart at this elevated rate, they come in and say, • • we're going to have, uh, to shock you. I'm like, really? And • • • • • • • • • • • I'm like, in the morning now, • • • • • • • • • • • • • • • • • like, wow, this is real. All of a sudden, this is real. • • My wife is with me, and I'm like, I want her with me. But I'm like, that's selfish. I don't want her to see me be shocked. So I asked her, do you want to be here for this? And she's like, no. • So she leaves the room, and they give me, • • • um, a Twilight drug and said, you won't remember anything. • • Uh huh. So they hit me. I remembered, no way, • • • really. And this is to get your heart rhythm back into a normal range, right? It's a • • • reset. So they were trying to reset my heart. And it • • did. • • • • • • And, • um, they said most people, just after it happened, the nurse said, you did so well. I'm like, what does that • • • • mean? They said, you didn't swear. I'm • • • • • • • • • • • • • like, I got through that. • • • • • And, • • um, they described it like being hit by a truck. And I said, I don't know what that means, but I played football, and I feel like I just got hit by a professional linebacker, and I didn't have any pads on. I mean, it just wax the hell out of • • • • • • you. • • Uh, so the rest of the night and when you're nice to • you, you're watching your • • • monitors. • • • • • • • • • • And I said a prayer that • • • night, and I said I would never, ever talk about it to • • • anybody. • • And a few days later, we had someone visiting us, a good friend of ours, and she was on a spiritual journey long before I was. And she asked the one question where I had to tell what • happened. And she asked, how does this change your relationship with God? And I looked at her, and I'm like. I said, it didn't. I said, when I'm sitting there and I'm watching those monitors and I'm watching my heart, trying to get back to where it was, this abnormal • • • state. I said a prayer of thanks. I said, thank you for the great life I • • • had. Please watch my offer. My wife. Please watch over my • girls. I'm not the type of person to sit there and beg and plead. So I said a prayer of • • thanks, • • • mhm, because I've been thankful for all the great opportunities I've had. Sure. • • • So the thing I said I would never talk about. I talked about. • • • • • • And it's been a real journey since then. • So then the doctors are trying to figure out what caused all this. So they went down the Lyme disease • • route. • • • • They did, um, all these different things. I did a cardiac MRI. I don't know if you ever had to do one of those. That's not one of those MRIs where you can just put in the tube. I fall asleep in those things. Mri I do, too. That doesn't bother • • me. Yeah, so they put me in, but you got to hold your • • • • • breath throughout, um, the test so your chest isn't moving up and • • down. And so they can isolate what's going on the • • chest. And after that cardiac MRI, they sort, uh, of had an idea that maybe it was sarcodosis. So that was their working theory at that • • time. And they would not let me leave the hospital until I had an • • • • ICD and, um, pacemaker installed on my • chest. So from the time I entered the hospital, the time I left, it was eight • • days. Went through all these • • • tests. It wasn't • • • • • • • • • until several, um, weeks later that I actually did a Pet scan. And that was basically their • • confirmation • • • that it looks like sarcastosis. As you probably know, they never can say it is sarcodosis unless they do a • • biopsy and they can actually confirm it. Well, Pet is noninvasive, • • • so, • • • uh, they figured out it looks. • • • • • • • • • • • Like where in your heart, Jack, is it on a valve. • • • • • • • • • • • • Or the way it was described to me, it's both on the • • • inside and the external of the heart. And that's the tricky part is the external part of the • • heart. The internal part of the • • • • • • heart. • Um, you can eventually address through ablazion. But if it's also on the external part of the heart, the external ablaze procedure is much different. They have to go underneath your ribcage and • • • up and then break the sac around the heart, then try to do the blazing that way, which is a much more tricky operation. Yeah, but I went from being on no medications whatsoever to being on. I can't tell you how many • • • • • • pills. One of the reasons I reached out to you is a lot of the folks talk about how the sarcmens just beat them up. And I've been fortunate. • The methotrexate I'm • • • • on and, um, the pregnantone I'm • • on, they really didn't, um, beat me up too bad. But the cardiac meds just wailed on me. Amy odorone. One of the side effects of amioterone • • • • • • • is, • • um, sun. But if you get in the • • • • • • sun, you just start burning up rather quickly. Like I could literally, on a sunny day, walk across a sunny parking lot when my wife would pick me up from the train station and I'd be beat • red. So it turned me into a • • • • • vampire. And you're an outdoors guy, right? • • So, nine, 09:00 the morning to four, 04:00 the afternoon. I just stayed in the • • shadows, and it • • just killed me. Just. • • Absolutely. I wanted to be. • • • • • • • • • Outside. Are you retired • • • or what is your job? Were you not working? What was going on then? So I'm still working. Uh, • I work for, um, Blue Cross. Blue Shield of • • Illinois. I don't know if you've ever, um, heard of Lean or Six Sigma, but that's sort of my gig. Basically it's process improvement type of work. I go in and look at • • • • • • things. • • • • Um, yes, but in the summer months, I like to be outside. I love the • • • • • • • • fish and do all that stuff. So that was really a Downer trying to get addressed to those drugs. And there's other drugs that they keep on wanting to slow your heart down. So lisinopril is one of • • them. It just slows everything down. And I was being lethargic, and I'm like, this is not how I want to • • • • • • be. And so that sort of started the journey towards getting off. How do I get off? Uh, these cardiac meds. So they transitioned me about a year later to this drug called Soda • • • • • Law, which doesn't have any side effects. Amy, odorone, but it has different side effects, which is more • • lethargy. And I'm • like, I can't do • • • • • • • • • this. I started, um, exploring • • • Ablation and • • • • • my, • • • • • um, um, electrical cardiologist. He's done a bunch of Ablations, but the fact that it might have to be both internal and • external, he said, I want to give you • • to refer you to one of the experts in the field to do this, because if it's external, I don't have experience doing that. Tell us all what Ablazion actually • • • • is. So my understanding, I'm going to get this wrong, and you get people. Okay. I won't correct you, that's for sure. So it's basically the same approach as an angio. They come in • • • through the leg, • • and when they find a • • • • • • • • • • • spot, • • um, they believe is • • Sark, they try to poke it and figure out, is this causing the heart to go crazy or not? Yeah. And if it • does, then • • • • • they do, um, some type of cauterization or some type of way • • • to remove that tissue. The granuloma. Yes. Right. Okay. • • • • • • So I, um, talked to two different experts. • • • • One guy said, you just might have to live this way the rest of your life. And I talked to another guy like, you're too young to be living like • this. This is what we can do for you. And it • • • was considered a high risk procedure. But I'm like, I can't continue to live like • • • • this is like. You can't pass a couch without taking a nap. Right. With talking about the lethargy and all • • • that. It wasn't that, um, bad. • But for me not to be able to work • • • • • out, that was my • • • • release. I needed to be able to work out, • • • • and it • • just beat me to the point I couldn't do anything. Got it. So eventually actually did this • ablasian. And before you do the Ablasion, they stopped you on all cardiac meds because they want the SARC to be • • • active. So what does that mean? When the sarcas is active in the heart, that means you can go into V TAC. And • • so two • • days before the procedure, I'm off all cardiac meds. I'm sitting at my desk upstairs, my wife's downstairs, and my device • • • fires. And so I • scream and she comes running up and she finds me basically in a fetal • • • • • • • position, um, • • • because I wanted to be tack. And so the device did what it was supposed to do. They've called an insurance policy, and • • • it reset the heart. And • • • • • • so the guy doing the um, Ablaze like, yeah, we want your heart to be active so we can find it. And after he did the procedure, he came in and visited with me, and he • • • • • • said he was all amped up, all excited. He's like, we found five spots, and we got him. • • • • And he's like, no more um restrictions, no more cardiac men. You can start going back and doing your normal • • activities. • • And they were in there for five, 5 hours. And they said, we still see stuff on the external part of the heart. But you know what? We had you under for five, 5 hours, see what this • • • does. And here I am, a year later, I haven't had • • • • events, and I'm off cardiac meds, which is good. I'm working out again, but I always have to watch my heart rate because you don't want this little device to fire. And so you still have • • • • • the um, pacemaker. Is that essentially what it is? Pacemaker and ICD ICD, which is basically shocks your • • • • heart. So if that thing fires, that means you're • • • • • • having laypersons from heart • • • attack. Correct. And the technology in the ICD is nothing but amazing. They can set the levels as to when it goes into pacing • • • • • mode, when it, um, will fire a warning to your heart to say, Knock it off and then to the full • • • • • • • • • • • • • reset. It's just rather amazing. The other thing about the • Ablazion • is the device was pasted me, like, seventy, 70% of • • the. So instead of my heart working on its own device had to keep on helping it. And I'm like, that doesn't sound right to • • • me. And so after the um, Ablasian, I'm being paced less than one 1% of the which is just • • • • huge. My heart's • • • working by itself now, which is what I • wanted. You're still taking a very small amount of prednisone, right? Yeah. • • So when I did all this started, they had me at twenty, 20, and then they stepped it down. I'm at two, 2.5 • • now. • • • • • And • • the Maxwellsight, I'm on • • fifteen, 15 once a • • • • • • • • • • • • • • • week. I know that's • • • • low, • • • • but it's still a drug. Also, they throw in • • • the Alanronite and • • • • • the • • • um, looking for the other drug. I'm on folic acid. So the allndronate to try to help • • • alleviate bone loss. Um, I think the folic acid does something else to counter one of the side effects of the • • methotrexide. Okay. By Sark Dock, actually. Who's one of the docs has been on your • • podcast, Dr. • • • • • • Sparn. He's, uh, my Doc. • • • • • Wow. Listening to your podcast has started connecting a bunch of dots for • • me. I think one of the podcasts you talked about, what's the most important factor in dealing with Sarcodosis? I'm listening to this, and I'm trying to • guess, and I like health. And I was wrong. It was zip code. And I'm like, okay, I'm very fortunate to be where I • • am. One of the leading guys in Sark research is • • here. He's my Doc. So I got very lucky. • • • And my cardiologist, um, at Northwestern, have been nothing but outstanding. • • • • And the guy to do the Ablation, um, was out of the University of Chicago, who was considered a leading expert in doing Ablasians. • • • And I feel very fortunate. • • • • • • So I guess when I wrote you just like three years. • • • • • • Wow. I know a lot of this discussion on this is • • about the people that hits the most is the pulmonary people. • • • • • But there's a small population of cardiac people out here, too, • • that there's additional level of complexity that goes into it. And even rarer is those of us who are neurosark people. • • • • • • • • So, • • • um, it is a lot. So, uh, let's back up a little bit. Thank you for sharing the story of your • • incident, but you mentioned your wife and your daughters, and you are my age, so I'm assuming that your daughters are grown or nearly grown. So tell us about your family • • • • life. Yeah. So my wife and I, next year, will be married. Forty, 40. We were high school • • sweethearts. I was a football player. She was a • • cheerleader. Cute. You got me by a couple of years on the marriage. I think we were on thirty 38th year, but, yeah, go ahead. All right. • • • • • • • • And with, um, the Air Force Academy. So, uh, I was in the Air Force, and both daughters were born • • while we were in the Air Force. Uh, so the oldest, Christine, • is, • uh, thirty 35. The Madeline is thirty 31 • • • and is an occupational therapist. • • Uh, and she loves what she does. And she • • welcomed a son into the, uh, world a year ago. So it's our first grandchild. And my daughter Madeline is in marketing, um, living downtown Chicago, having a blast. • • • • • • • • • • So it's been a lot of fun with the girls raising them. They're, uh, both University of Iowa grads, and they had a lot of fun • there and learned a lot, and they made a lot of friends. In • • • fact, my wife's, um, husband is also she met him at the University of • • • • • • • • • • • • • • • • • Iowa. Again, both of, um, them are very close to us. • • So we're staying here for a while. Yeah. Your daughter's husband, I • • • believe. Yeah. • • Right. Well, that's, um, • • • • • • • • • • • cool. So you've led an active life. You were a football • • • • • • • • • player. I've got to talk a little bit about the bicycling and so • • • • forth. So you, uh, were riding one 120 miles • • • a prior to this. And I consider myself pretty avid cyclists. But for me, one 100 miles a week is a week that I put a star next to in my logs. Like, this was a really good week. And you were doing that • • regularly. Yeah. That was several years ago when I was really, just really into • • • • • it. And, • • • um, my baseline is jogging. So that's where I started. And I've • done four • • • • marathons, including the Boston Marathon, which was joy to Drew. Congrats. Thank you. • • • • • • And three of the four marathons, um, I did under four, 4 hours was my goal. And • • • • so I was training for this, um, one • marathon. And I usually never signed up in advance • • because if the weather was bad in Chicago, I didn't want to be running in nasty weather. And so I went to sign up the day before, and they were like, • • • no, it's, um, all full. I'm like, But I trained for a marathon. I'm ready to go. So someone then told me about triathlons. And I swam in high school, too. So I'm like, okay, I can do the swimming part. So I got on a bike and it was one of these old swim • bikes. And I realized, all right, I got to do something better than this. And so I started upgrading the • • bikes. • • And my very first Triathlon, um, I did was a half Iron Man because I trained • • • for a marathon. I'm like, uh, I can do this stuff. And I'm like, after I did it, I'm like, oh, I can do a full Iron Man. And my wife's • • like, not happening. • • Uh, so a full Iron Man for people that don't know is you start out with • • • • a two, 2.4 miles, I • • • • • think. And then you ride your bike. One 112 miles, you run a marathon, correct. All back to back to back, correct? Yeah. So I did a half version of. • • • • • • • • • • That. So we • • • host an Ironman event here, uh, in Roanoke, Virginia, where I live, and it's a half. And I just did the bike part last • • • year. Not as part of the event, uh, but just to do it. And of course, here we live in the mountains, • • • • • so it's a very • • difficult. Fifty 50 it is. • • • Fifty, 56 miles. • • Uh, • • right. I can't imagine doing, um, all those other things on either side of it yet. Lots of. Lots of people do. Or to double it. That's. • • • • • • • • • Crazy. But it's something I really enjoyed. I just enjoyed the feeling of being outside and in • • • • • shape again. That's part, uh, of the journey. I'm trying to what's my • • new exercise normal. So last • • • • • • • • summer I was only, um, able to get forty, 40 miles a on the • • • • • • • • • • • bike. I think I even wrote this to you. I'm pedaling, I'm pedaling. I'm like, I know I'm going fast. And I look down the speedometer and I'm like, no, you're • • • • • • • • • • • not. That's part of getting older, too. I understand that. • • • • But just the energy doesn't seem to be close to what I've expected on the trajectory of getting • • • • • older. Now, the ablation that you had done, uh, when was that? That was March of last year. So you're still basically recovering from that, would you • • • • • • • • • • • • say? • • • • • • Um, • • • • • again, I don't think so. • • • • • Because it's a year out and I had no cardiac events. So should I start having cardiac events • • • • again then? Maybe I need to go back and get another • • one. And I've heard there's been people that have to go back and get repeated ablations, but I think if I go back again, they're going to play with the external part of the heart because there's still the scarring there on • that. • • • • • • • But otherwise, I, um, feel pretty good. So you're walking around feeling good, • • but your fitness level hasn't returned to the fitness level that you had pre ablaze and • precise. No, not even close, right? It might not. • • Right. I will never run seven and a half miles every other day ever again. It just won't happen. Right. So I now do • • intervals. I was told that's mhm even better for me. So I get my heart rate to a certain, um, • • point, and then I walk until it gets to a certain point. And I keep on bouncing up, back and forth. Right? Because • • • • • • • • • again, I don't want this device to. • • • • • • • • • • Fire. Um, it seems to me like you're living right on the edge. So you're doing intervals, which is where you run really hard and you watch your heart rate get jacked up. And then when it gets to a certain point, you walk until it comes back down. And then you do it • again. And, uh, then you walk until it comes back down. Then you do it again. And I've done this on the bike, and I've done it running as • • • • well. And the word, um, when you're running is, • • • • uh, Norwegian word • • • • • fartlek, which is not what it is. I think it's F-A-R-T-L-E-K. • Fartlek. It's named after the guy that developed. So, um, you're doing that. So you're really pushing the boundaries, right? Yeah, I'm trying to get back to feeling fit. So I guess to answer your early • • • question, I'm better than where I was before the Ablaze, but I'm not preparedak event. Uh, so not even • • • close. So how have you reimagined your life now since you've had to go through. • • • • • • • • • • • • • • Sarcodosis? • • • • • • • Um, I think I take things more in stride now. • • • • • • Maybe it's just, um, everything I just look at, • • like, thankful for every moment I have now. Because, again, I thought this could have been it. I can't tell you how many times my wife and I have been told that if I had not been in • • • shape, no way. There's just no way I would have made it. So the fact • • • • • • • • • that I just, um, did a stress test, and the nurse looked at my record and she's like, I've never seen anyone be in V tag that long and come out of it. • Okay. • • • • • • So I feel very blessed. Um, so I try to look at that. I do a lot of volunteer • • • • work. I refocused my energies, um, and doing volunteer work again with the skill set I have, it's very specialized. • • • So I work with a group called Catch a Fire, which • • is basically a clearing house for, um, nonprofits to find volunteers. So over the last three years, I've done about over ninety 90 with • them, ranging • • • • • • • from, um, helping do Mission Vision value statements to Excel training, • • to doing data analysis to doing all these different • • things. And I've met all these different non profits across the United States. I've actually worked with some guy in Australia, worked with a couple of folks in • • • • • • Africa. It • • really seemed to be focusing more on • • that, hoping to get to retirement, um, at some point. Right. Because I think that • • • • will keep my mind • • active. Right. And when you go outside and so you ride your bicycle • • • • • • now on the trails and paths, um, around Chicago, trying to stay off the road so you don't have to fight with the cars. Right. So they converted old rail lines around here a long time ago. So there's a whole network. The one near me is called the Prairie Path. • And it's limestone paved • • • • • • and it's just a much safer • • ride. Back in my heyday, when I was really, um, going at it, I would ride on the streets, but I usually drive a half hour west of where I am to get more towards the countryside where there is less • • • • traffic. All it takes is one guy not paying attention • • and you're in a world of hurt. Yeah, no, it's • • true. I'm riding more and more offroad myself, but I still do get out on the roads. We're very fortunate • • • that you can be rural very quickly when you're outside Roanoke, Virginia, as opposed to Chicago. • • • • Right. We're a small • • • • city. Virginia's Blue Ridge is how, um, we're now marketing this. • • • • • • • • Region. And you've got a grandchild. • • • • • • • • • • Um, four years ago I had none. Now I have six. Holy cow. So, grandchildren changed the way I, uh, look at • • • • life, that's for • • sure. And, um, I'm sure that that's the same for • • • you. • • • • • Absolutely. He just turned one. And so, • • • • • • • • • • • • um, we've actually, uh, made going over the last three weekends. We're looking around, it's snowing outside. Let's see if our daughter wants to visit her. So we go over • • • • there, we eat lunch, and then we play for a couple hours until he's ready for a nap. So that's just really refocus what's going on. • • • • And he's at an age • • • where he's very active, like my oldest daughter was. And • • so it's like playing with my daughter again. He wants to fly around the room. And so it's just a lot of fun doing that. • • So it's the point. Now he recognizes me and as soon as he sees me again, he wants to start flying around the room. So it's a lot of fun. But I will tell you, making that little kid fly around the room, I'm gassed after it's over. Right. • • • So I think again, that's part • of dealing with how my body reacts to stuff. Now, before I could do anything, • • • • and I'd be • • • • • • fine. • • • • • Yeah, it's frustrating. You, uh, can't do what you once did. So they call sarcaidosis the Snowflake disease because it impacts each of us • • • • differently. I've also run the Boston Marathon. Um, Congratulations. Thank • • • • you. I just always thought of myself as, uh, the guy that would always be fit and would always be healthier • • • • • than a certain large percentage of the people walking around beside me. • • • And I guess now I think I was arrogant to think that because sarcodosis just knocks you back a step. Two steps, three steps. • And it's hard to realize that • • • • • while playing with my grandchild tires me • • • • out. Yeah, • • • • • • • • • • absolutely. Again, your form of, um, it is • • • much. I think each form is so unique, and I was so lucky to have my aspect of it addressed through the Ablasian. So it's sort of like. But every time I go out, I am looking at that watch going, Is my heart gonna play nice today or not? So it's always in the back of your mind, is what's going to • • • • • • • • • • • • • • • • • happen? To answer, I think, your earlier • • • • • question, it's always there in being thought of. So your doctor, Dr. • • Spoon, said that your sarcoidosis is not active, but he described it as simmering. Can you tell us what that is? Because I hadn't heard that before, but I think there are times when that's been my • • case. Right. So the last Pet scan I • • • • • • • had, he said, um, great • • • • • • news. There's no stark activity, uh, in the • • heart. There's no stark activity in the • • lungs. But as I look at your lymph nodes, they're • • glowing. And he said, it's not • • active. So let's just call simmering. It's • • there. • And let's not mess with your current medication • • regime, because ideally, they would love to taper you off. But I've had more than a few doctors tell me that if • • • you let the Sark flare again as you taper your meds, it comes back with a vengeance. And I really don't want vengeance, because vengeance, in my case, means I get more scarring on my • • heart. And then I got to rinse and repeat the medications, the ablaze again. So if I have to live with the • • medication regime I live on right • • now, so be it. And I think I've heard a couple of people on your • • • • podcast. I've just got to learn to live with what's being done. But in my choice with the cardiac Mans, I had another alternative, which was the ablasian. • Right. But you don't want to have to do another ablaze, • • • • • because even if that works, your heart will never • • be what it once. • • • • • • • • • Was. Every time they do that, it hurts your heart a little bit more. Right. And every flare you get hurt your heart a little bit more • • • permanently. • • And the phrase heart transplant has been used in front of me before, and that • • • • just scares me. • • • • • • • • • • • • • • • • • And again, I don't want to ever get there, • • • • but it's out • • • • • • • there so whenever they do an Echo cardiogram, they're looking to ejection fraction. And I'm like, • • • • • • borderline. Okay. And they're like, if it drops to a certain point, then, • • uh, the next consideration • • • • • is heart transplant. I'm like, let's not go there • • • • • • yet. Let's see what we can do without before we get there. • • • Right. So you get up in the morning • • • • • • and do you work from • • • • home? What do you do? Do you go to work? I'm in a hybrid schedule. So two days at home, three • • • • • • • • • days at work. • Um, and, • um, three days are downtown Chicago. Uh, so if you ever been to • • • • Chicago, the Blue Cross building is right across from Millennium Park. If you ever went and saw the • • bean. I can see that from my office. Wow. • • • • • • • • • • • And the Metro, which is the, um, commuter training. You take that in • • • • there. We actually have a bus that runs from this train station, um, to the building. But I walk. I walk every time. So it's about twenty, 25 minutes. And again, I like being • outside. Yeah, I love the bean. The bean is so • • • • • • • cool. It's a sculpture that's shaped like a bean, and it's about the size of a small house. Is that fair? Yeah, that's fair. And it's just you see a mirror reflection no matter where you walk around it or under it or • • • • • • whatever. I love the bean. That's so cool. Um, and so you're, uh, walking twenty, • • • • • • 25, um, three days a week, and you're feeling fine, right? Yeah, they're back. So I'm walking fifty, 50 • • • • • • minutes. It's feeling okay. • • Um, • • • • • • • • • • • • • • awesome. You mentioned your relationship with God before we were talking, and other people have brought that up. Have you become more or less religious, or do you look at things in a more philosophical way? • • • • • • • • Now I'm going to go • • • towards no. But I also will say I continued, I'm continuing my spiritual journey. I'm continuing to try to • • • • • • • • • • • understand my faith, • • • um, about that. So right now I'm reading something • • that's • • where there was a group • • • • • • • • of priests, um, that actually did a critical evaluation of, • um, the four Gospels, trying, uh, to say, is this something that Jesus really would have said? And it's • • • • • really in depth. So I keep on exploring things. They might not be popular topics to talk about, but I'm just trying to • • • explore my • • • • • • • • • • faith. If you think about the volunteer work, I • • • • • • do think Christianity, a lot of it is about giving • • • • • • • • • • back. So, yes, I've been doing more and more and more of • • • • • • that. • • • • • But, • • • um, it's something I continue to explore, and it's just to • • me, it's fascinating. I think the underlying • • message • • • of Jesus, • • • • again, • • • • uh, love your • • neighbors • • • • • and love God above all. I think that's a great message, and it's hard to practice it sometimes loving your neighbors, but it's great to aspire to that. • • • • So I'm really interested in understanding about • • • that. Got you, Jack. Is there anything else you want to add at this. • • • • • • • • • • • Point. • • So this is an um aside. • • • • • • • • So after I had this cardiac • • • • • • • • • event every year since, two, um, thousand and one, I've gone on a canoe • • • trip. I don't know if you heard of • • • • • • • • • • • • Quetico. Yes, I've been there three times. Okay. • So for the • • • • • listeners, if you've heard of Boundary Waters in • • Minnesota, it's a place where there's no motor boats. It's canoes only quadico is the Canadian version of that. It has bigger in • • size and it may allow fewer people • • in. So I've been doing quadico trips, eight day, seven night trips since two 2001. And when nine • • • 911, we were in the • • • • • • • field. Nine 911, I what happened • • • on • • Tuesday? And, • • uh, uh, we were in the field. We had no • • idea. And when we came out of the field, we were • • • • • • • • • • told they like playing jokes. And you come back like, there's something like the camp ran out of hot water and the guy that picks us up • • • • says they • • • bombed the towers in the Twin Cities. • • • Um, I'm like, who's going to bomb Minneapolis St. Paul, right? Yeah. And so we thought it was a joke. We didn't believe it. And it took a phone call • • • home and for my seven year old daughter at that time to say, yes, they bombed New York to make it • • • • • real. • • Anyway, I go up to quitaco every year. And after this cardiac event, I said, I'm going. And my wife is like, you're not. I'm going. • • • • • • • • • • • • • • And two months before a • • trip, I got a blood clot. So with • • • • • this device, the ICD pacemaker, um, they run wires, uh, through your veins, down to your • • • heart. And typically, if a blood clot shows, it shows up • • • early. But mine showed up late. So now I'm on blood • • thinners. And if you know about the credit • • • • • • • code, there is no seven 711, no emergency care. You're all by yourself. There's no communication. Correct. Unless you have a • • • cell phone, right? Yeah. When we went, there were no cell phones, no walkie talkies, • • nothing. And • • so I'm going. Even with this heart condition • • • • • • • • • • and my reaction to Amy odorone • • • • • and the blood thinners, I'm going, which • • is • • • fairly not smartly, dangerous. A month before I went, I'm owing the grass • • • • • and come in and take a shower. And I'm washing myself. I'm, um, like, what's • • • this? I had a • • • • • hernia. • • And so I'm like, come • • • • on. So I bought one of those • • • • girdles that pushed it in. So I, um, went to Quidico that year with. You • • did? Yes. With all that going on. And my wife was not pleased, but I'm like, I got to go. This is sort of, um, like my annual • • • release. So I thought you would appreciate that • • story. It goes back to what I need to, um, be. • • • • • • • • • • • • • • • • • • Outside. One of my bucket list things is to get back • • • • • • there. It's been over twenty 20 since I went, but I went three years in a row with a local group of guys and the fishing is the best fishing I've ever had in my • • life. But it's rigorous because we would paddle, I think, about one 110 miles where they dropped us off. Then we would sort of paddle back to a pickup • • • point in the canoe. And then you Portage between the Lakes. So you're carrying your canoe, you're carrying your backpack, you're looking out for • • • • bears, and you just basically fished your way to the, um, next campsite. Is that how you guys did it? Absolutely. • • And there's • • something people like. It's just canoeing. Well, the portagne is what kills people. So I brought a couple of newbies this year, • • • and the portages just kick their butt. Yeah, well, they can be a mile • • • • long. Some of them are very short. You hop for there's four, 400 within the Quittico Wilderness. Right. And only, as I recall, only two, 200 of even have names, and the rest of them are just regarded as large puddles. They're not worthy. But you go • • • • from body of water to body of water to body of • • • • • • water, and you follow your map and, • • um, hope you don't get lost. I had some scary moments, but I can't believe you're able to do that with • • • Sarcardosis. Yeah. So I'm still doing it • • • • • • • • • and made it through that trip. Uh, okay. But, • • um, that's what I want to • • • • • • do. And you've talked about it, I think, on your podcast several times • • about you got to get back • to what feels right. Your body might not be one 100% the way you want it, but you got to get back to what you want to • • do • is make the effort. So I just keep on making the • • • • • effort. Do you carry the canoe yourself when it's your, um, turn on the. • • • • • • • Portage? This year I did, yes. This year I, um, canoe because I had a solo canoe, and I did • • • a solo paddle because I was with two other guys, two new guys, and I couldn't find a four fourth. I • • • • sold. Okay. Call me. What month do you go? • • • Typically, I typically go after Labor Day just because the mosquitoes are down. Okay. And that's a good time to go. And again, if you're going back there at some point and you want a suggested • • • route, I've been through all the entry points in quadico, and I've hit most of the major paths, so I definitely have suggestions or, uh, tell you where it would be fun to go. Okay. Yeah, we'll have to talk. We'll start boring people really fast if we get into a deep dive into this remote Canadian • • • • • wilderness. • • • • • But, yeah, I can't believe that I'm, um, talking to somebody else who's actually been there, because when I bring it up, • • everybody, they have no idea what I'm talking about. Sometimes boundary waters mean something to people. Right. But critico, you fly in on a float plane, they drop you, uh, off, and • • then it's fantastic. I love it. Well, Jack, thank you so much good luck at the critico this year. If you're planning, uh, to go in September again. • • Absolutely. Okay. All • right. And I wish you all the luck in the world with fighting sarcodosis. • • • And thanks, uh, for fighting the good • • fight. Alright. Uh, thanks and I appreciate you let me tell my. • • • • • • • • • • • • • • •
Coach Brit shares so many gems about overcoming, loss, her own experience with abuse and how a significant loss of a loved on shaped and changed her perspective. She works in the mental health field during the day, and has her coaching agency to serve women in a way that the world needs more of. In ths conversation with Gabi she talks about how we aren't our bodies, that we are SO much more than that. Empowering women to see themselves beyond those exterior pieces and root your worthiness in your core. Understanding now that she's on the other side of digging into her healing, and what that looks like as she moves in the world, with clients on a daily basis. Authenticity is what connected Brit and Gabi initially, and this conversation is the bi product of authentic connection and relationship building. Bio: I was a military child moving around until my parents settled in Spokane, WA when I was 8 years old. Life and my career have taken me to various states and as far as Germany. I am 1 of 11 children raised in a combined family. I have over 20 nieces and nephews and I am the best auntie-mommy! I have a Bachelor's degree in Human Resources Management and am currently in my Master's program for Mental Health Counseling with Capella University. I am a #metoo survivor and advocate passionately against sexual violence and assault. I volunteered with the YMCA in Seattle, WA as a youth mentor. I also volunteered for a year with SARC in Tri Cities, WA as a crisis and rape advocate in 2019. I currently volunteer with LCS as a Crisis and Rape Advocate. This allows me the opportunity to take crisis calls and go to the hospitals when a sexual assault survivor presents. Many people do not know their rights as a victim of abuse and violence and I am blessed to help each survivor know their rights and advocate for them through the hospital visit. So why life coaching? Because I love people and people sometimes get stuck in a rut. Not every problem we face in life requires therapy. We all have different goals, needs and life experiences that have shaped us. Sometimes we need someone who doesn't know us at all to hear us and process with. Quotables: "There is no one right way." "It's so fun when you're working with a client and they are like AH-HA." "I am not my trauma." Connect with Brit here: instagram.com/coach_Brit https://www.facebook.com/Anchoredcandc/ https://www.linkedin.com/in/britany-patsfield-7b541a49/ Connect with Gabi here: https://www.instagram.com/gabi.garland/ https://www.facebook.com/gabrielle.anaya.5