Stay ConnectedThe podcast network that speaks to people with chronic illness, invisible illness, disability, and chronic pain.
“Explicitly Sick Podcast” with Monica Michelle + “[Human]care Podcast” with Eva Minkoff
Be Kind. Be Gentle. Be A Bad Ass.
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Join us for Part 2 of our inspiring conversation with acclaimed Fantasy Author Faye Perez on the "Invisible Not Broken" podcast! In this wide-ranging episode, Faye shares unique insights on how "Dressing Up" can be a powerful path to joy and self-expression, even when navigating the complexities of invisible disabilities.
We delve into the "Rebellion of Kindness" and its role in fostering positive change, exploring how to build resilient communities in increasingly challenging times. Faye also offers profound reflections on the changing landscape of social norms and the nuanced experience of "Aging in the Time of COVID," providing a unique perspective on resilience and adaptation.
For aspiring and established writers, this episode is packed with wisdom! Faye demystifies the "Writing Journey," revealing practical strategies for "Organizing Your Thoughts for Writing Success" and the transformative power of "Embracing the Joy of Writing." She candidly discusses "Navigating the Writer's Journey" and the profound "Art of Writing: Process and Responsibility."
Tune in for an authentic, thought-provoking discussion that blends creativity, social commentary, and personal growth. Whether you're a fantasy fan, an aspiring writer, or someone interested in disability advocacy and building a kinder world, this episode offers invaluable takeaways.
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Summary
In this conversation, the speakers discuss various aspects of puppy training, particularly focusing on the challenges of training service dogs. They delve into the teenage phase of puppies, the fear periods that can arise during development, and how to manage trauma in service dogs after negative encounters with other dogs. The conversation emphasizes the importance of proper training techniques, socialization, and the need for vigilance in public spaces to ensure the safety and well-being of service dogs. This conversation delves into the essential aspects of training service dogs, focusing on foundational skills, assessment programs, handling emergencies, and navigating the challenges of training during a dog's teenage phase. The speakers discuss the importance of confidence in dogs, the differences between CGC and PDA programs, and practical advice for trainers, especially those with disabilities. They also touch on the timing of neutering and its impact on behavior, emphasizing a tailored approach to each dog's training journey.
Keywords
puppy training, service dogs, fear periods, dog behavior, trauma recovery, dog interactions, training tips, service dog management, puppy adolescence, dog anxiety, service dog training, dog behavior, training techniques, mobility aids, dog assessment programs, emergency handling, teenage dog training, neutering debate
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*This episode was recorded back in 2020
Monica Michelle is joined by artist and author, Sarah Bigham, who began writing about her experiences and painting, using dissolved medications and supplements as watercolors. Her creative endeavors are a distraction from the pain of several recent diagnoses and have been the silver lining of her medical journey.
Sarah lives with:
Sarah's links
In this episode, Monica and Sarah discuss:
Self-care as self-love
01:00 - Sarah’s Story
5:39 - The Wellness Movement
8:12- ‘Bad’ Words
13:59 - Social Media & the News: Pros and Cons
19:03- Covid and Chronic Illness
21:51 - Pandemic Upsides
27:00 - Creativity and Chronic Illness
32:26 - Self-care as Self-love
33:40 - Final Thoughts
The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy!
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Monica Michelle is joined by author of The Lady’s Handbook For Her Mysterious Illness, Sarah Ramey.
Sarah Ramey lives with:
*This episode was recorded back in 2020 but is very much still topical today.
In this episode, Sarah Ramey and Monica discuss:
TIMESTAMPS
01:53 - Sarah’s Story
8:17 - Being Denied Painkillers
12:00- Forced into Becoming a Wellness “Warrior” with Non-Traditional Medicine
17:00 - Feeling Bad for Your Symptoms
19:00- Empathy in the Medical World
23:13 - “WOMIS” - A Woman with a Mysterious Illness
25:31 - Chronic Fatigue Syndrome within a World of Other Issues
29:01 - Working From Home
33:49 - David Bowie’s Labyrinth and the Parallels
38:40 - Breaking the Gender Normative
48:06 - Final Thoughts
Show notes and the full transcript are located on the episode page. Thank you and enjoy!
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THROWBACK TO OUR 100TH EPISODE: Managing from Mattress with Eva Minkoff and Monica Michelle.
In this episode, we talk about our individual experiences & tips for managing our flares on our "bed bound" days. Since the two of us have varying degrees of illness severity and mattress-bound frequency, this episode covers much of the spectrum of experiences when one has a chronic illness.
Links/suggestions mentioned:
Monica's other podcast - "I Can't Believe That Happened" Podcast
Libby: https://meet.libbyapp.com/ - "Did you know your local library has thousands of ebooks and audiobooks? You can borrow them, instantly, for free, using just the device in your hand."
Scrivener: https://apps.apple.com/us/app/scrivener/id972387337 - "Scrivener is the go-to app for writers of all kinds, used every day by best-selling novelists, screenwriters, non-fiction writers, students, academics, lawyers, journalists, translators and more."
Movies/TV shows
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In today’s roundtable discussion, Monica and Eva chat with Jessie Ace, a fellow podcaster, MS warrior, advocate and multi-passionate entrepreneur. On her podcast, Disabled to Enabled, Jessie interviews inspiring people also affected by chronic illness who have turned their diagnosis into something incredibly unexpected.
In this episode of Invisible Not Broken, Monica and I have a talk with jessie about quarantine life and how to start a podcast, so peppered throughout the conversation you'll hear us recommended over a dozen tips and resources for addressing both.
We’ve also decided to try out an idea given to us by jessie herself regarding podcasting! Were going to be trying 15-25 minute segments for a little while instead of 1-hr at a time so that you can digest our episodes at your own pace.
In somewhat related news, We have started building up our official invisible not broken facebook group where you can ask questions, connect with fellow invisible illness peers, and make suggestions for the podcast….like whether or not you end up liking our episode splits!
In part 1 we discuss:
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Hey everyone – Spoonies, Wellness Seekers, practitioners – all ya'll – Eva here.
It’s a beautiful blue day up here in Rochester NY.
I’ve been inside for 5 days straight and miraculously I'm not going crazy just yet.
Ok…so 3 quick things:
#1. For the next few weeks, Monica and I plan to publish episodes that focus on the “How to’s” when it comes to COVID19.
Why? Well, it’s kind of tough to ignore right now for anyone let alone people like us with chronic illnesses and disabilities.
Monica and I – like you and the rest of the world – are going through this together, and just like So many organizations around the world doing their part to support their communities, the least we can do is help ours by giving some tips and tricks to make the best of not-ideal situation.
Some current topics on the docket for upcoming episodes:
· How to navigate care during COVID19
· How to Survive Relationships during COVID19
· How to Support your mental health during COVID19
· How to use telemedicine during COVID19
FUN TOPICS? Not so much. But knowing Monica and me, we’ll be sure to get a few giggles in there too.
Now we want to hear from you: what else would you like to learn? What would help you through these uncertain times? Do you have a guest or resource in mind? Always love suggestions. If you have any, send an email to: chronicillnesspodcast@gmail.com
#2. Invisible not broken is expanding! We’re not only a podcast but soon to be a podcast network. Basically that means a bunch of other different but equally or even MORE awesome podcast shows related to chronic illnesses will be joining our invisible not broken family. If you haven’t noticed, Monica and I have already split ours into two different names as well. monica’s is the Explicitly Sick podcast and mine is the Wellacopia podcast (although between you and me, im probably changing that name soon). All this to say, stay tuned for updates but most importantly right now, this expansion is going to require some lovin from you guys.
The best way to show us your love is by becoming a Patron! For just $5 or even $1 you can make a big difference in helping us get off the ground. We’ve always been entirely self-funded, so if you appreciate the content that Monica and I have been producing – whether youre brand new or a long time fan – we’d greatly appreciate your generous gift of the equivalent of 1 starbucks coffee a month.
As another gift in return, we’re giving our patrons access to private live group chats and Q/A’s plus some “Snarky Saturday” poster art made by the talented miss Monica.
Lastly #3 Going back to the topic of Telemedicine, Wellacopia is upping the ante on telehealth care right now in support of the coronavirus pandemic and the whole “stay safe stay home” agenda.
If you are looking for mental health therapists, functional medicine doctors, immune-specialist nutritionists, physical therapy, – we have these practitioners and more all over the country available for care via video chat. If you want to get matched, visit Wellacopia.com or text me directly and ill match you myself.
Text “I seek care” to the number 646 883-3022, again that’s 646 883-3022.
We can also just chat. Always love connecting with my fellow wellness seekers and Spoonies.
Ok that’s it for now.
As always be kind. Be gentle. Be badass everyone!
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Visit Wellacopia.com to find your ideal practitioner and community.
Visit Dr. Bhandari's site to learn more and connect with her.
And don't forget to check out the SF Advanced
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Dr. Payal Bhandari:
"When people are empowered they often pay the favor forward by positively impacting other people's lives."
• What is/was your profession? Integrative Functional Family Physician specializing on cellular health and the impact of the microbiome, nutrient deficiencies, and toxin overload.
• What is your illness(es)? Chronic eczema
• Where do you work/what’s your business? Owner and senior physician of integrative medical center, SF Advanced Health in San Francisco, CA
• What types of patients/conditions do you work with? Patients with either a chronic disease or no diagnosis with debilitating symptoms who have already been evaluated by many different medical physicians and other healthcare specialists but unfortunately are not getting better.
Personal Questions:
1. What makes your approach to care unique? I give people as much time as necessary to truly understand the full picture and discover exactly where their problem lies on a cellular level. I can then define an effective personalized treatment plan which drives results quickly and empowers the patients to use tools they easily have access to.
2. How did your illness shape your career? The persistence and intensity of my chronic eczema throughout my life has never responded or resolved with all the treatment options offered by conventional western medicine. The debilitating nature of my skin disorder would cause severe itching, skin bleeding, anxiety, and poor sleep. When my youngest daughter also began to develop variants of eczema in the form of idiopathic hives by age 2 and my oldest daughter required an emergency oophorectomy at age 6, I became determined to find real answers. I couldn’t accept that my daughter’s and my health issues were idiopathic (aka., without a cause) as we were always informed by our doctors.
I began doing aggressive research outside of allopathic scientific research, and discovered how intertwined nutrition, gut function, the nervous system, and environmental toxins are with one’s health. I realized that all acute symptoms and chronic diseases are actually caused by cell dysfunction and poor neurotransmitter signaling caused by environmental factors. These discoveries led me to shift my perspective on how I lived my life, cared for my family and patients.
I began shifting away from being a traditional family physician who just treated patients’ symptoms with pharmaceuticals loaded with side effects or recommended expensive tests and invasive procedures which did not necessary address the underlying cause. I began integrating from many different schools of thought in order to understand exactly how the body functions on a cellular level. I now specialize in discovering the root cause of any chronic condition by blending the best in evidence-based Eastern and Western Medicine. Patients are now given personalized treatments utilizing tools they already have and hence, feel empowered. Significant results occur within weeks.
3. What do/did you do when you don’t know what to do about a patient? I have built an amazing team of healthcare professionals both within my integrative medical center and within the community which I reach out for guidance in helping care of my patients.
4. Are/were you open about your illnesses with your patients? Always! When practitioners connect with patients on the same level, we humanize the experience, and built trust and confidence with our patients.
5. What does “trust” mean to you in the patient-practitioner relationship? Everything! Without trust, there is no confidence, faith, and hence, no relationship.
6. What are you most passionate about in regard to your work/helping people? In touching as many people's lives as possible in innovative ways and transforming their lives. When people are empowered they often pay the favor forward by positively impacting other people's lives.
7. How do/did you handle flares while at work? By staying calm and not getting overwhelmed while also increasing hydration, and decreasing how much food I consumed and eventually eliminating certain foods.
8. How do/did you handle being a practitioner, patient and your personal life? My work has always been intertwined with the rest of my life and who I am. When I continue to embrace how best to care for myself, I give my best to all aspects of my life. When hiccups come along, I have had to take a few steps back and reassess where I needed to own myself in order to get back on the right path.
9. Do you tell your patients what you tell yourself/do you practice what you preach? YES! I can’t recommend treatments I haven’t tried myself. It is the only way I know exactly how to help patients and exactly what is going to help them get better.
10. How do you research conditions? By attending educational conferences, staying in close touch with laboratory and supplement companies in order to understand the latest developments in diagnostic and medication research, being connected to other integrative holistic practitioners, keeping up with the latest research through extensive readings.
10A. How do you convey this knowledge to patients? In the most concise, simple, comprehensive way which connects with each patient
11. How have you found care? Did you find good practitioners? What was your experience like? Through word-of-mouth; My experience has been that people are very open to help and to be a part of a collaborative community focused on taking amazing care of clients and professionals simultaneously.
12. Tell us about a special experience with a patient that you found to be inspiring: I recently saw a patient with debilitating psoriasis which covered her entire body and causing severe constant itching. It had led to increasing isolation and poor self-esteem. We uncovered the root cause of the patient’s skin disorder and began making some dramatic changes in her diet and overall lifestyle. The patient initially was surprised to lose all of her excess weight and start breathing more comfortably. She eventually saw the rash completely resolve. Her confidence dramatically improved allowing her to begin dating and becoming more physically active, desires she had had for years but found impossible to obtain.
13. If you had one message to send out to every chronic illness patient out there, what would it be? Love is all around. You just have to stop isolating yourself and know that you have never been alone or will be alone on your journey. Hope will always help you find a way to heal.
14. Where can the audience find you in terms of social media, website, etc.?
Our website
Our blog
Our Instagram
Our newsletter
****How to learn more from Dr. Bhandari:
Sign up for our monthly newsletter and connect with us on social media. You can keep up to date with the plethora of education material we post on our weekly blog, monthly video and podcasts, along with new services and cutting-edge technologies we utilize on our website. For instance, we are offering digital thermal imaging also called thermography at our center starting this June so that we can detect inflammation 10 years earlier than any other diagnostic scan and hence, be able to more effectively treat and reverse any chronic disease. We will also be launching the German technology BEMER mat to remarkably improve blood flow to the arterioles and nutrients to the cells.
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Criminal Mind, Russian Doll, and Umbrella Academy
Caraval, Flatout Love, and The Lie Tree
What is your disorder? *
At what age did your disorder become a daily issue? *
32
Who were you before your illness became debilitating? *
An active and happy science teacher, wife, doggy-mom, yogi
What would you do if you were not dealing with your invisible illness? *
Work, help more around the house, travel & exercise more
What would you like people to know about your daily life? *
Some days are better than others, but it's still hard physically (I'm in pain a lot) and it wears on you mentally too. I have to think about everything ahead of time to determine if I can do it and if so, what modification/assistance do I need to be able to do said things. (spoon theory)
What would make living and moving in the world easier for you? *
If the world was actually handicap-friendly and if public transportation was better in the US. Also, if people knew about invisible illnesses and were more kind and helpful to each other...I get a lot of "but you don't look sick", "but you look good", "you're so young"...etc. Finally, if I was able to work part time.
Do you have any life hacks? *
What kind of support do you get from family or friends? *
Thankfully a lot! I literally wouldn't be alive through all this without them. Husband has taken on a lot at home to help, siblings came and visited and helped, mom took off 3 weeks to come be with me for my surgery. Other family members, friends, colleagues, and students sent cards, gifts, food, gave me rides, etc. And of course my dogs have been snuggling me like crazy to help!
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
Yes. My first vascular surgeon insisted that I couldn't possibly be having so many symptoms and so much pain from just one pinched vein. I quickly got a different vascular surgeon! (Plus I'm young, small and cute, so I often get odd looks from people when I use cane or walker and use the handicap placard)
How has your invisible illness affected your relationships? *
It's shown me who really is a good friend and who isn't. I have to decline doing some of the activities that my friends want to go do and sometimes cancel things I've rsvp-ed to if I'm not feeling well. My husband and I have ultimately grown stronger through this, but there have been stress-filled outburst at each other from time to time and we can't really be intimate since my pain is primarily in the abdominal and pelvic region.
Is there anything you are afraid to tell people in your life? *
I don't think anyone really understands how hard it's been both physically and mentally. I'm good at putting on a fake smile and saying "I'm ok" or mostly posting the "good days" or small accomplishments online. I'm also really nervous about returning to work after my medical leave is up.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Yes and especially since mine is a rare disorder, even if they believe me, most of them don't really know what it is or how to help.
What is your best coping mechanism? *
Humor...and my dogs.
What are you the most concerned about and the most hopeful for in the future? *
Returning to work is my answer to both of those questions.
What is your favorite swear word?
I don't really use swear words much...I tend to make up silly words instead.
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
I want to spread awareness about my disorder, possible interventions like the surgery I had (renal auto-transplant) and what recovery is really like.
What is the hardest and/or best lesson your condition has taught you?
To take life slow, enjoy the simple things, and don't get upset over stupid stuff.
What is the best purchase under $100 that helped your life
My rollator walker and/or my bedside swivel table
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Thank you!What is your disorder? *
Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome, Ehlers Danlo’s Syndrome, other GI issues
At what age did your disorder become a daily issue? *
19
Who were you before your illness became debilitating? *
A runner, softball player, and marching band lover who had to give that all up.
What would you do if you were not dealing with your invisible illness? *
I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.
What would you like people to know about your daily life? *
Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.
What would make living and moving in the world easier for you? *
Pain management and understanding of my condition as a whole.
Do you have any life hacks? *
Almond milk helps a sour stomach lol
What kind of support do you get from family or friends? *
I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha
How has your invisible illness affected your relationships? *
It has destroyed them and ruined my mental state.
Is there anything you are afraid to tell people in your life? *
I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
No, it makes them more understanding once I got my diagnoses and how to treat me.
What is your best coping mechanism? *
Sharing myself with others.
What are you the most concerned about and the hopeful for in the future? *
Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.
What is your favorite swear word?
FAQQQQQ(fuck) in all varieties haha
What is the hardest and/or best lesson your condition has taught you?
I need to learn self-love and self-coping mechanisms
What is the best purchase under $100 that helped your life
My yellow heavy duty portable wheelchair ramp haha
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