Justin Goodman is on a mission with his organization Project 55: to educate, equip and empower the 55% of adults with mental health struggles that aren’t getting the care they need. His journey to this mission was a tumultuous one, in which he has overcome addiction, learned to manage Bipolar II, and faced the lifelong challenge of Scheuermann’s disease. Justin is now focused on helping others in crisis, having developed a deep sense of gratitude for the lessons he has learned along the way.

In this episode of the Major Pain podcast, we sit down with Justin to hear the incredible story of everything he has overcome, and how it inspired the founding of Project 55. As a teenager he developed Scheuermann’s disease, a skeletal disorder characterized by uneven growth of the vertebrae, leading to a forward curvature of the spine known as kyphosis. At first it was assumed he was just having growing pains, but as his disease rapidly progressed it began to restrict every aspect of his life. By the time it was determined he was actually experiencing Scheuermann’s disease he was given two options: manage the pain with opioids, or undergo extreme surgery. He chose prescription pain management. Since this was in the time before narcotics were not closely monitored, he soon developed a dangerous dependence. If not for an intervention from his closest friends, he would not have survived.

Justin now manages the pain from Scheuermann’s disease using a variety of alternative techniques, including conditioning his lower back, mobility work and staying away from inflammatory foods. He has also found relief from a manual therapy called rolfing, in which the rigid fascia around the muscles is ground down to make it malleable. Justin is an avid golfer, and although Scheuermann’s disease initially took him away from the sport, he is now able to participate again due to the success of his disease management. Justin also discusses his journey with Bipolar II, and how mental health struggles inspired him to create Project 55. As a passionate advocate for others in need, Justin has translated his own struggles into a powerful platform for change.

Learn more about Project 55 on their website: https://project55.org/

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As a baby, Sarah didn’t know that her diagnosis with asthma would be the first in a long list of diagnoses that would eventually grow to over twenty. Today she manages these conditions with the help of her husband Dan and cat Daisy. She juggles her self care with working as a fundraiser for a charity organization and screening films for the South by Southwest film festival. When not working, she finds joyful movement as a ballroom dancer.

In this episode of the Major Pain podcast, Jesse talks with Sarah about her health journey, including several illnesses we have never discussed on the show before. The first is exercise induced laryngeal obstruction (EILO), an asthma like condition involving the vocal chords closing, which prevents patients from bringing in air properly during intense physical activity. The second is lichen sclerosus, a skin condition causing discolored and thin skin. Due to the sensitive and personal nature of this condition it can be extremely hard to discuss, making first-hand information scarce. Other topics of discussion include central auditory processing disorder, making it difficult to understand words spoken in a noisy or distracting environment, and managing neurodivergence on top of multiple physical conditions.

Sarah is continuing to work at being joyfully disabled. She hopes to show others that with a little accommodation you can live a full life with chronic illness. She wants others to take the advice she has the most trouble taking herself, to be compassionate to yourself, and know that gratitude is not a competition.

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Several years ago, Janene was at a golf tournament when something terrifying happened. Out of nowhere her feet began to burn, as if she were walking on hot coals. She discovered that blisters were spreading across her feet at an alarming rate, as if she were being burned by an invisible fire. As the blisters continued to spread she rushed to the doctor, but nobody had any idea what was going on. After several terrifying days she finally saw a dermatologist who diagnosed her with generalized pustular psoriasis (GPP). She went home with four creams, pain meds and steroids. Thankfully, this intervention helped bring this outbreak of GPP under control.

In this episode of the Major Pain podcast, Janene talks us through her experience with generalized pustular psoriasis as well as her complicated chronic illness history. Along with GPP she has also been diagnosed with plaque psoriasis, lupus, Sjogren’s syndrome, Raynaud’s disease and rheumatoid arthritis. As a mother of twins, managing this many diseases has been a challenge. However, her experience with GPP was the most horrific medical trauma she has been through. That’s why she has devoted herself to spreading information and awareness about generalized pustular psoriasis, to help others find their way through this painful disease.

Learn more about generalized pustular psoriasis at GPPandMe.com

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
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