Ever been curious about the inner workings of chronic illness from the perspective of a renowned specialist who's also a patient? Join us in a profound discussion with Dr. Saimun Singla, a triple-board-certified physician who battles rheumatoid arthritis daily. Dr. Singla unravels her journey as she was diagnosed with the condition even while she was already a qualified rheumatologist. She brings to light the necessity of early detection, the criticality of educating oneself about chronic illnesses, and the many ways to manage the symptoms.
As we delve deeper into the conversation, Dr. Singla introduces the world of integrative medicine, its immense importance in managing chronic disease, and her personal toolkit for managing her symptoms. From the practical ways to handle a flare-up to the fundamentals of anti-inflammatory diets, physical therapy, and the power of community support, this episode is teeming with valuable information. Plus, we cover the differences between joint pain and joint stiffness, and provide insights on how to differentiate between arthralgia and arthritis.
Lastly, we address the psychological and emotional toll of living with a chronic illness. The importance of setting sensible goals, fostering resilience, and seeking support is underscored. We also discuss how to navigate through the challenges that chronic illnesses bring forth and the invaluable benefit of interacting with people who have shared experiences. As we wind up, we share practical ways to handle flares, and emphasize the necessity of having robust coping strategies when dealing with chronic illnesses. This episode will leave you equipped with a wealth of knowledge to face the battles of chronic illness head-on.
https://linktr.ee/rheumtogrowtx

Send us a text

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/

Are you caught in the crossfire of chronic illness in the Spoonie community? Feel like your healthcare provider is gaslighting you? Hear from Stefanie, the rheumatoid arthritis coach, who opens up about her own experiences with medical gaslighting as a patient and a family nurse practitioner. She pulls back the curtain on this hot topic, discussing what gaslighting entails in the healthcare sector. She equips us with effective communication strategies to foster a healthier dialogue with our medical providers.
The conversation takes a deep dive, discussing the red flags that come with medical gaslighting based on Stefanie's personal experiences. Jen shares a rather chilling encounter of being prescribed a medication that led to a seizure and her rheumatologist's shocking response. This segment underscores the need for open, honest discussions with healthcare providers, the importance of second opinions, and the role of shared decision-making in healthcare. Stefanie leaves us with practical tips to prepare for an appointment and the difference between gaslighting and medical professional exhausting all options.
Stefanie doesn't stop there; she shares her experiences with healthcare challenges and how she navigated the hurdles. She advocates for asking the right questions and emphasizes the importance of being kind to yourself when dealing with a chronic illness. And finally, we get a sneak peek into Stefanie's world as a rheumatoid arthritis coach, where she teaches clients to live their best life despite their condition. You'll hear about her six-month program designed to equip clients with the tools they need to navigate their health journey. So buckle up and prepare for a riveting conversation brimming with indispensable insights and practical advice.
https://www.instagram.com/rheumatoidarthritiscoach/
https://linktr.ee/rheumatoidarthritiscoach

Send us a text

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/

Listen to this episode as I sit down to chat with Rekha about her journey with Lupus.

Lupus is a disease that occurs when your body's immune system attacks your own tissues and organs (autoimmune disease). Inflammation caused by Lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart, and lungs.

Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of Lupus — a facial rash resembling a butterfly's wings unfolding across both cheeks — occurs in many but not all cases of Lupus.

Some people are born with a tendency toward developing Lupus, which may be triggered by infections, certain drugs, or even sunlight. While there's no cure for Lupus, treatments can help control symptoms.
Rekha Sreedhara is a chronic illness warrior and advocate. She was diagnosed with systemic lupus erythematosus in 2001. Since then, she has been diagnosed with cutaneous lupus erythematosus and lupus nephritis as well as two rare diseases, pulmonary arterial hypertension, and thrombotic thrombocytopenic purpura.
Rekha works as a public health consultant specializing in substance use disorders. She resides in Massachusetts with her husband and three cats. In her spare time, Rekha loves to binge-watch shows; if you need a recommendation, she's your girl. She also enjoys traveling and has visited more than ten countries. Thriving one day at a time since 2001
Sharing experiences, strategies, hope, and laughter
Lupus | PAH | TTP
IG:https://www.instagram.com/livinglupustogether/

Send us a text

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/

Andi a 42-year-old Holistic Wellness Practitioner. She is passionate about helping women find their happiness!
Let's start here: between the ages of 14 and now, she was diagnosed with what she refers to as autoimmune mayhem (MS, SLE, RA, POTS, Fibro ). "Every day, there is something going haywire in my body & it's always an adventure to figure out which system is causing it."
"My life changed on March 10, 2020, when I suffered a sudden cardiac arrest at work. (I was out for 34 mins)
Recovery taught me that prior to the "incident," I was "too busy" actually to enjoy life. I wasn't making memories filled with belly laughs and true bonds. I was afraid to tell my story because I didn't want to hear the fan fav "you don't look sick." "
Today, she is grateful for the storm because now it allows her to truly admire every rainbow 🌈
https://instagram.com/chronicallyiconiccoach?igshid=YmMyMTA2M2Y=
To support this podcast, please leave a review, share it with your fellow Spoonie Sisters, or buy me a coffee.

Send us a text

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/

Are you ready to decode the enigma of 'Spoon Theory'? Let's embark on a journey together, unraveling this metaphorical term coined by the notable blogger, Christine Mizerendino. We'll leverage the concept of spoons as units of daily energy, revealing the victories and challenges inherent in life with chronic illnesses or disabilities. Prepare to discover 15 signs that resonate with the 'Spoonie' life, from systematically designed daily routines to the comfort found in the empathetic companionship of fellow Spoonies.
Feeling alone in your battle? Here's a promise - you are not! The wonderful world of social media abounds with expansive communities brimming with support and understanding. Simply look up hashtags like #Spoonies, #SpoonieCommunities, and #SpoonieSupport, and you'll find a universe of resources. From Rare, Patient Voice, Reactive Rehab, and countless more, you'll never be short of encouragement. We're rooting for you, and eager to accompany you along this journey. So, why wait? Come, share your story, and remember, never forget your spoon!
https://myspooniesisters.chewack.com/

Send us a text

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/