Sjogren's Syndrome with Mimi From Florida

Send us Fan MailIn this episode of Rare Connection, Mimi shares her 20-year battle for a Sjögren’s syndrome diagnosis—a disease often misunderstood as just a "dry eye disorder" but one that led to respiratory failure and lung scarring in her case. She opens up about her journey with pulmonary fibrosis, nightly oxygen therapy, and the challenges of being taken seriously by medical professionals.Beyond her health struggles, Mimi is an author and advocate with 33 years of sobriety. She discusses how trauma and resilience shape both her medical experiences and her work, including her books The Anatomy of an Alien and Raised by Wolves: Trapped by Demons.Join us as we explore the intersection of rare disease, trauma, and advocacy—and what needs to change in how patients are heard and treated.Topics We Cover: ✔️ Why Sjögren’s syndrome is more than just dry eyes ✔️ The 20-year struggle for a diagnosis and medical validation ✔️ How Sjögren’s led to pulmonary fibrosis and oxygen therapy ✔️ Medical gaslighting and the importance of self-advocacy ✔️ The link between rare disease, trauma, and resilience ✔️ Mimi’s books and her mission to empower others🔹 Follow Rare Connection on Facebook, X, and LinkedIn to keep the conversation going!⚠️ If you or someone you know is struggling, help is available. Call or text 988 for support—you are not alone.Chapter Markers0:00:00 Intro0:02:22 Btain fog0:04:22 Fibromyalgia0:05:58 Car Accident0:07:34 Alcohol induced black outs0:08:16 rehab0:10:17 lao band surgery0:17:14 Sense of tarste changed0:18:18 contacr lenses0:20:18 Dry Eyes and Throat0:21:05 Mimi finds Sjogren's Syndrome on her own 0:22:30 breathing issues0:23.:14 Concierge doctor0:25:09 respiratory failure0:26:34 speech Therapy0:28:50 Blood Marker for Sjogren;s Syndrome found in salivary gland0:29:13 Breast Cancer0:31:09 Implants0:31:36 Red Breast Syndrome0:33:53 Polyps0:36:21 Osteoporpsos0:39:10 Debtal problems0:40:24 Mimi is a caregiver for her husband who has Parkinson's 0:41:06 Therapy0:42:06 Mimi's furst book Raised By Wolves Trapped by Demons0:42:57 Small Nerve Fiber Neuropathy0:45:54 Spigilean Hernias0:48:11 2nd Book The Anatomy of an Allien0:50:15   What doctors should know0:52:05 How respiratory issues unfolded0:54:15 Daily Life0:57:09 oxygen machine0:58:39 Past Trauma1:01:24 suicide1:02:20 Medical gas lighting1:07:31 inspiration for books1:09:42 Advice for other patients struggling to be heard1:12:00 Dietary changes anf Sjogren's Syndrome1:14:19 Conclusion;18:18Support the show