Because We Are Strong

Happy THANKSGIVING peeps! Join us as we go over a year to be grateful for. 

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Connect with us:

@findyourrare
on all your favorite social media channels

https://www.findyourrare.com

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

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Christine Rich is an award-winning marketing executive, retired spin instructor, speaker, mentor, mama, advocate, and author.

She is passionate about raising awareness about the intersection of chronic illness and mental health and advocating for better support for patients and physicians.

She serves on the board of directors of the Northeast Ohio Crohn's & Colitis Foundation, is a support group facilitator and also volunteers on the national Crohn's & Colitis Foundation's Patient Advisory Task Force.


Imagine the collective power if every person with a chronic illness spoke candidly about how mental and emotional health affects their physical symptoms.

I was diagnosed with an autoimmune disease at a young age and spent many years trying to hide from and deny the fear, anger, and sadness I felt because of my illness. I recently published a book called "Chronic" about how a serious health scare in my late twenties caused me to reevaluate and change her focus to wellness and self-love rather than illness and fear.

Through raw and personal stories and insights, I share my journey of living with and befriending my less-than-glamorous, often times invisible, chronic illness called Crohn's disease.

These insights include:

How women insist they’re “fine” even when they aren’t.

Why physicians should consistently discuss mental health with their patients.

What the power of radical acceptance and self-love can provide.

Chronic encourages readers to shift their perspective of chronic illness from one of shame or fear to one of acceptance and love. Throughout her book, I give readers reasons to feel empowered and to know they are not alone.

Connect with Christine:
Instagram: @christinerich_author

Website: www.christinemrich.com

Amazon: https://www.amazon.com/Chronic-Christine-M-Rich/dp/1636764827/ref=sr_1_1?dchild=1&keywords=chronic+christine+rich&qid=1633886322&sr=8-1

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This Episode is sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Theresa (aka T.Co) is the marketing coordinator for RARE. Her journey in the RARE. world began in 2017 after an unfortunate accident with a camping chair. She developed a rare condition called Complex Regional Pain Syndrome (CRPS) where her brain misfires pain signals. 

After extensive physical rehab and finding the right medication, Theresa went into remission. But at the same time, she had developed another rare condition called Gastroparesis. This means she has a partially paralyzed stomach and cannot digest food properly. 

After two years of numerous hospital admissions and many tests, Theresa’s care team decided the best option was to place a surgical G/J feeding tube so she could alleviate nausea while also getting proper nutrition. Theresa has a very complicated relationship with her tube, but she is grateful for what it does for her body. 

If you’d like to connect with her, she can be reached on Instagram and Twitter @ReeseLove21 or emailed at [email protected].

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This Episode is Sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Hey Peeps! Welcome back to another weekly episode of Because We are Strong!  This week we are talking with Leeya, who was only 15 years old when she started down this rare journey. In her sophomore year, she was diagnosed56 with GLA which changed her and her family's lives forever. Now at just 20 years old, Leeya has found a passion for advocacy. I am always in awe of the young advocates in this rare space and I am so confident in the work they will do to bring the invisible visible.
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Meet Leeya:
I am an honest person who at 20 years old has been through a lot in 4 1/2 years. At 15 years old, I went down the path to find out what was wrong. A lot of friends did not understand what I was going through and sometimes still do not.
Mental struggles are true and I also deal with neuropathic pain on top of the condition.

Diagnosed with Generalized Lymphatic Anomaly (GLA) at 15 years old during the first semester of sophomore year of high school. Since then, my family and I have been on a crazy but rewarding journey. Rewarding in the fact that we all love advocating and I have found a deep passion in wanting to pursue a career in hospital administration.

Learned and have gone through many things which have led to some “friends” coming and going. That’s also a learning experience of who you want in your life.

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Connect with Leeya:
Instagram - @leeyas.story
Go to www.lgdalliance.org for further information about patients like me with these complex lymphatic anomalies.

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This episode is sponsored by :

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Hey Peeps! It’s Kristine and I am flying solo! Today we have a very special guest, Olympic volleyball player Tri Bourne! Not only is Tri an elite athlete, he also is a RARE. athlete, having been diagnosed with Dermatomyositis in 2016. This is going to be a great episode, so let’s dive in

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Tri Bourne is a professional beach volleyball player, former professional indoor player and NCAA Division 1 Men's Volleyball player for the USC Trojans. He has been a part of the United States indoor and beach national teams since 2005. He was born on the Hawaiian island of Oahu, where he grew up. Tri's journey has been truly RARE.  In 2016 the onset of a rare disease came and took Tri out of the game for nearly two years. Determined to make his dreams come true Tri fought back and found himself at the Toyko 2020 Olympics.

Meet Tri Bourne:
I’m a beach vball professional. I got an autoimmune disease back in 2017 which kept me out for 2 seasons. I later came back, after making the most of my time off, and made the Olympic team…. Find more information at my website www.tribourne.net

Learn More about Tri Myositis Journey

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Connect with Tri:

FB: tribourne
IG:@tribourne
YouTube channel:  Tri Bourne 


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This episode is sponsored by :

Consolidoc - www.consolidoc.com 

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Meet Barby Ingles:

I was living my dream. I trained and performed cheerleading, dance and gymnastics starting at age 4 through college. Straight out of college I started my own cheer/dance training company. A year later I was hired by Washington State University as the head spirit program coach. I have been battling chronic pain since 1997. First with Endometriosis which resulted in a full hysterectomy and left oophorectomy. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), is a progressive neuro-autoimmune condition that affects multiple system in the body and needs to be treated early so that disability does not take over and TMJ. I lost my physical abilities was bed bound for years. Using a wheelchair to get to get out of bed. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. I know firsthand how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying could actually be what you’re experiencing. As I search for a cure, I have become my own best advocate and work sharing the information so that others do not have the same life struggles that I have. Even after seeing over 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and so much more – I did not give up or give in! 

I advocate for all of us challenged with a chronic care condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. One in three people (116 million)  in the United States are affected with a condition that causes pain, so it is bound to affect you or someone you know. But until you feel the pain it is difficult to understand all of the challenges it brings on. Whether physical or mental, pain can and will consume you if you allow it to and only the patient can begin the process of healing! My hope is that my speaking engagements and books will inspire your eventual transformation filled with HOPE and motivation.

About Ipain:
iPain Foundations objectives are reached through important educational events, support, resources, and enhancement projects that are funded through private donations and grants. The Power of Pain Foundation (dba: International Pain Foundation) demonstrates its commitment to the chronic pain community by promoting new knowledge in the cause and treatment of chronic pain conditions. The ultimate goal is to provide tools and life skills to chronic pain patients giving them the ability to perform their regular activities in the community and to bolster society’s ability to provide full opportunities and appropriate supports. Supporting education for pain patients, family members, caregivers and medical professionals, we make an important contribution to the overall knowledge and treatment of chronic pain. This allows our foundation to affect the lives of millions of people with chronic pain worldwide. Whether you have pain or are a caregiver, family member or friend of someone diagnosed, we’ll help you face the challenges and life changes of chronic pain, head on.

Connect With Barby :
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The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Hey, Peeps welcome to this bonus episode of because we are strong. Today I am so excited to introduce you to an up-and-coming author who I happened to have stumbled upon while strolling on Instagram. Golara author of Immigrant courage required. The invisible challenges of the estimated 272 million international migrants is a topic that needs to be brought to light now more than ever.
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Purchase a copy of Immigrant: Courage Required

Barnes and Nobels: https://www.barnesandnoble.com/w/immigrant-golara-haghtalab/1140101131?ean=9781636764979

Amazon: https://www.amazon.com/Immigrant-Courage-Required-Golara-Haghtalab-ebook/dp/B09DTJLLQF/ref=cm_cr_arp_d_product_top?ie=UTF8

Connect with Golara:

Instagram: @g_o_l_a_r_a

Inquiry email: [email protected]

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This podcast was sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

I am a survivor of stage 3b colorectal cancer. I was diagnosed in May 2018 after a routine colonoscopy. I have been NED since February of 2019. Trevor Maxwell a stage IV CRC patient who created Manuptocancer.com ask me to help him create The Howling Place Group on Facebook. We have grown to 1100 men strong in 16 months. The goal is to help men not to self isolate themselves during cancer diagnosis and treatment. to also support them during survivorship

Stage 3b colorectal cancer survivor Durham, N.C.

I was diagnosed in May of 2018 with stage3b Colorectal Cancer after a routine Colonoscopy at age 50. I had symptoms for a few months but had ignored them for several months following the death of both my parents in 2017 within a six-month period. During the Colonoscopy, my GI doctor found two polyps and a 1Ocm tumor in my colon. I had surgery to remove the tumor, reconnect my colon, and had 40 lymph nodes removed. Three of those tested positive for cancer. After surgery i underwent treatment with two forms of chemotherapy, Oxaliplatin infusions and Xeloda pills for 8 cycles or six months. In February 2019 I became known as NED (No Evidence of Disease) or cancer-free.

Over the last few months, I have been working on finding my voice in the cancer community. I have begun living by the mantra " Cancer might be done with me but I'm not done with cancer." I have looked to other men in the cancer community who have made strides in this area and followed their examples. The following are my current roles of advocacy in the cancer community.

*** January 2020 Lead Administrator for the Men's Cancer Facebook support group 'Man Up To Cancer/ The Howling Place' . It's a part of manuptocancer.com 

*** February 2020 I became a 'Card Angel' for Chemo Angels

***April 2020 I became a contributor to manuptocancer.com as a blogger for ' Joe's Wolfpack Trailblazers' . A blog about the works of service and the daily lives of the men of The Howling Place. 

***June 2020 I became an Ambassador for Fight CRC 2021 

*** October 2020 I became an Empowered Patient Leader for Colontown.org

***December 2020 Created 'Colontown Junior' with the help of Colontown.org to support the families of children diagnosed with pediatric colorectal cancer.

I am married to my wife Michelle Bullock for 29 years. We live in Durham, N.C. with our two children.

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Connect with Joe:
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twitter @jbullock114

https://www.facebook.com/joe.bullock.7792

instagram jbullock114

manuptocancer.com

www.facebook.com/groups/manuptocancer/

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This episode is sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Show Notes:

Hey peeps! Welcome back to another episode of Because We Are Strong. Today we are sitting down with a very special guest from the UK who has been nominated for a we go health award this year and is a fierce advocate. Fez has had 3 kidney transplants but continues to fight not only for himself but for others through mentoring and his work as an organ donation ambassador.

Connect with Fez:

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This Episode is Sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Meet D-Rek
Derek Canas (AKA D-REK), born a sweet, cute, seemingly healthy baby, had everything going for him until the age of 3 months, when he was surrounded by many doctors talking about transposition of the great arteries, pacemakers, and blood transfusions. His parents now had, what they called a “battery operated son”. This was a scary scenario for his parents with so many touch-and-go moments. 16-years later another illness that Derek had been living with started to show symptoms: HIV. This only brought on a more terrifying roller-coaster ride. With courage, unconditional love and sheer determination, Derek was not going to let any one of his health issues get in the way of his dream of becoming a DJ! Spinning music is the passion of his soul. Today, taking his fight against HIV to new hope, He can be found on WEGO health as a patient leader. A survivor of both open heart surgery and HIV, his doctors refer to him as "The Terminator." And that he is!! He is also the creator of the #EndTheStigma Campaign and D-REK's Angels and Warriors. On the weekends he turns into the crazy DJ – living his dreams!!

Connect with D-Rek
Twitter:DJDREK84
Facebook: EndTheStigma912
Youtube : EndTheStigma912
Instagram : Dreksangelsandwarriors

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The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show