Social:

Navigating college with a disability? 🎓🧩 Stop the guesswork. We're chatting with MMeri Scholars' founder about their MUST-HAVE list of truly accessible universities. Parents, don't miss this! 🏫✨

🎧 Listen to Invisible Not Broken: 🔗 in bio.

#CollegeBound #Neurodiversity #InvisibleNotBroken #SpecialNeedsParenting

summary

In this insightful interview, Lisa shares her expertise on college accessibility for students with disabilities, highlighting resources, challenges, and strategies for families and students to navigate higher education inclusively.

keywords

college accessibility, disabilities, inclusive education, college planning, neurodivergence, mental health, college resources, advocacy, higher education, college admissions

Chapters

00:00 Introduction to M.M.E.R.I. and Its Mission

02:51 The Importance of Inclusivity in Education

05:46 Researching Accessible Colleges

08:39 Spotlighting Supportive Colleges

11:39 Identifying Red Flags in College Selection

14:21 Barriers in College Admissions

17:24 The Role of K-12 Education in College Readiness

19:52 Navigating College Applications and Testing

22:47 Blind Spots in College Admissions

25:28 Supporting Adult Learners

28:21 Getting the Guide into Schools

31:17 Conclusion and Resources

Summary

In this conversation, the hosts discuss the challenges and experiences related to accessibility and accommodations in education, particularly for students with disabilities. They explore the differences between community colleges and universities, the bureaucratic hurdles in obtaining necessary accommodations, and the impact of societal structures on access to education. The discussion also touches on the role of technology, the financial burdens of education, and the importance of creating inclusive environments for all students. The conversation concludes with thoughts on the potential of AI in education and the need for systemic change to ensure equity and access for all learners.

Chronic illness is a marathon and not a sprint! Monica (Explicitly Sick) and Jason (Discomfort Zone) talk about how they cope with chronic illness and other life bullshit:

• Finding the people that won't tell you you're crazy
• Pets that both comfort and injure Monica
• Meditating when you can't sit still
• Denial! YES, denial is a perfectly legitimate coping response, and never let anyone tell you otherwise :)

**ALSO, BIG ANNOUNCEMENT: Monica and Jason are both seeking your stories on gaslighting. These stories could be a part of a long-form audio story or in Monica's Magazine. Send us an email at contact@invisiblenotbroken.com with a written or oral summary of your story. In the subject line, please write "gaslighting stories" as well as your country of residence.

@INVISIBLENOTBROKEN

Hosted on Acast. See acast.com/privacy for more information.

Website/Blog, Twitter, & Instagram Handle

DZonePodcast, DZonePodcast

Name *

Jason Herterich

What is your disorder? *

Fibromyalgia, postural orthostatic tachycardia syndrome (POTS), and irritable bowel syndrome (IBS)

At what age did your disorder become a daily issue? *

22

Who were you before your illness became debilitating? *

An outgoing, energetic, adventurous, driven fourth-year engineering physics student and a varsity triathlete

What would you do if you were not dealing with your disorder and/or disability? *

If I wasn't dealing with my disorder and/or disability, I could be doing any of the following: starting a family, focusing on my engineering career, competing in sports, traveling the world, volunteering with vulnerable members of our society.

What would you like people to know about your daily life? *

I 'live with' pain, I don't 'suffer from' pain. Despite the many challenges my illness presents, my life is very purposeful. There are times when I experience depression, but I'm generally a positive person.

What would make living and moving in the world easier for you? *

It would make my life easier if we could all end the stigma on invisible/chronic illness and mental health. I wish I could talk more openly about these topics without the fear of making everyone around me uncomfortable.

Do you have any life hacks? *

Active decision-making: Periodically throughout the day, I check in with myself to see how I'm feeling physically/emotionally and I make conscious choices about how to use my time/energy. I weigh the pros and cons of each potential decision and select one accordingly. Candlelight hour: An hour before bed, I turn off all artificial sources of light and only use candlelight. (Quick science note: artificial light is more blue-shifted in the light spectrum, which suppresses the production of melatonin. Fire, on the other hand, is more red-shifted, which supports the production of melatonin.) Weighted pen: In the past, I've experienced severe arm pain and have had difficulty using a pen or pencil. Solution: I created a weighted pen by wrapping electrical tape around 4 nails. That way, I can let gravity do more of the work and I don't have to press down as hard.

What kind of support do you get from family or friends? *

I live with my parents. They help me with cooking, cleaning, and other household chores. I have leaned on my sister and friends for emotional support when needed, which isn't very often anymore.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

In 2014, the anesthesiologist told me that he deals with patients who have much worse pain than me and that I should simply return to work. For the first 3.5 years of my illness, my parents and grandparents were either skeptical or in denial of the existence of my symptoms.

How has your chronic illness affected your relationships? *

Before becoming ill, I loved group gatherings with friends and meeting new people. Since developing my illness, I can't handle large groups of people. I mostly get together with friends 1-on-1 and do low key things like go for a walk, drink tea, sit around and talk, or play board games.

Is there anything you are afraid to tell people in your life? *

Not really. I've talked openly with my loved ones and on my podcast about how I used to experience suicidal ideation. I don't shy away from difficult conversations if I think that doing so could be fruitful.

What is your best coping mechanism? *

Walking in nature

What are you the most concerned about and the most hopeful for in the future? *

I'm most concerned about whether or not I'll be able to return to a full-time career, live an independent life, and have children (if I decide that's what I'd like to do). I'm hopeful that, over time, I'll find a deeper sense of purpose in my work as I become more involved with advocacy efforts for persons with chronic illness and disabilities.

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.

If you'd like, we can chat about my dad dealing with a potential case of COVID-19 after returning from Cuba in early March. (Note: he actually tested negative, but the head of Neurology at a major Toronto Hospital suspects that he was a false-negative. He nearly required hospitalization at his worst) Promoting my podcast, Discomfort Zone - a show on what it's like to live with an invisible and chronic illness. I explore how I developed chronic pain, the daily realities I currently face, and the uncertain road that lies ahead. This podcast stars myself, family, friends, and other members of the chronic illness community. www.discomfort.fm Social media handle: @DZonePodcast I'm also an advisory member for D-Next Accessible Media Lab, an emerging lab that is led and run by a creative team of new media artists, filmmakers, journalists, and advisory members with disabilities. We are dedicated to producing authentic underrepresented portrayals of people with disabilities in the mainstream and social media, told through a nothing for us without us lens. https://www.cilt.ca/d-net-project/

What makes you energized or enthusiastic? What drains you?

I am energized by listening to peoples' stories, telling my own, and connecting with the chronic illness and disability community. I'm drained by conversations involving politics, hate-filled speech, ableism, racism, and sexism. I dislike conversations that divide us as a society. I also don't watch any cable news.

Any favorite books or shows?

I mainly consume podcasts! Radiolab, Snap Judgment, Heavyweight, White Coat Black Art, and last, but not least, Invisible Not Broken :)

What is the hardest and/or best lesson your condition has taught you?

That regardless of the situation I find myself in, my energy is best spent by focusing on "How do I make the most of things?" NOT "What could have gone differently?" Also, it's OK to accept help.

What is the best purchase under $100 that helped your life

Earbuds! I listen to podcasts for hours every day, I definitely got my money's worth

iMovie, CoVid rap, chronic illness, chronic illness and travel, chronic illness and CoVid, Chronic illness and life choices, chronic illness and travel,ME, Fibromyalgia, chronic illness podacst, DiscomfortZone, Jason Herterich, Monica Michelle, Invisible Not Broken, Explicitly Sick

Hosted on Acast. See acast.com/privacy for more information.

Trigger Warning: In our discussion we discuss: PTSD, Depression and suicide

International Hotlines

1-800-273-8255 National suicide prevention hotline with messaging

Resources

The Red Badge Project

Website/Blog, Twitter, & Instagram Handle

https://kathryntrueblood.com/

Name *

Kathryn Trueblood

What is your disorder? *

Crohns Disease and Graves Disease

At what age did your disorder become a daily issue? *

45

Who were you before your illness became debilitating? *

An over-functioning wife of a depressive man while raising two children with special needs and teaching full-time as I climbed the career ladder and maintained the family's health insurance.

What would you do if you were not dealing with your invisible illness? *

Go hiking and backpacking and dancing.

What would you like people to know about your daily life? *

Even though I manage the regular workweek (in part because I can work from home when I am not teaching), I spend every weekend out of remission and/or in pain. Then it is time to get up and do it again Amen.

What would make living and moving in the world easier for you? *

The ability to work part-time.

Do you have any life hacks? *

Yes. In your day planner, write down anything you do that is restorative to you as an appointment, be it a pedicure or a yoga class or a walk with the dog. Use your initials, if you like. That way, you won't give away your time for yourself. When people look over your shoulder, they see that these spots are already spoken for, and don't start suggesting times and dates. Same goes with your Outlook Calendar.

What kind of support do you get from family or friends? *

My husband will always rub my back, even in the middle of the night. He is the most compassionate person I know. My best friend will talk through anything will me and she takes me to any procedures or surgeries I need when my husband is our of town.

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? *

I have had colleagues express anger, resentment, and envy when I was on a part-time medical leave. I've heard them say, "Well, you look fine." One colleague actually said, "Well, if it's not one thing with you, it's another." That one stayed with me.

How has your chronic illness affected your relationships? *

When I am out of remission, I tend to isolate myself. Partly because I am exhausted and partly because I don't want people to see me when I am ill or in pain. In my last work promotion file, I was very candid about why I had two part-time medical leaves and how illness has affected my outlook. I began working with veterans after my illness in 2007, offering them storytelling workshops through The Red Badge Project because I felt their isolation and I believe in the healing power of telling stories. My illness has made me willing to be vulnerable and candid with people, to sit with their pain, and vets love dark humor.

Is there anything you are afraid to tell people in your life? *

Yes, that when I get worn down by pain, I sometimes think about jumping off the Deception Pass Bridge. It is more a fantasy than a plan, but in the fantasy I perceive that moment as very liberating, to leap into the air and be carried by the tides. Just so you know, I have had two immediate family members attempt suicide and I would never inflict that kind of pain upon my loved ones, nor would I want to increase their likelihood of making an attempt later in life.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

I don't think so. I have a pretty solid team.

What is your best coping mechanism? *

Meditation, yoga, and soft-serve ice cream. Having a session with the family dog!

What are you the most concerned about and the most hopeful for in the future? *

I am very concerned about the lack of social services and healthcare for so many who are suffering from chronic illness in this country. I am hopeful because Americans are innovators and I believe we can turn global climate change around. I believe in the kindness of people because my experience has shown me that most people are kind.

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'd like to talk about parenting while chronically ill, from the children's perspective as well as the parent's. I was inspired to write the book because I could not find what I felt were honest representations in fiction or non-fiction.

What is the hardest and/or best lesson your condition has taught you?

The hardest? I could no longer use my tremendous will power to over-ride my body. I had received an overdue notice from God (!), and it was time to pay attention. The best? How deeply love abides, how durable it is.

What is the best purchase under $100 that helped your life

A Samsonite business case on wheels.

Any questions you think we should add to this list?

How do the protagonist's children respond to her diagnosis of Crohn’s disease? Do their coping strategies change throughout the book?

Hosted on Acast. See acast.com/privacy for more information.

What is your disorder? *

Thoracic Outlet Syndrome (& IBS, Anxiety)

At what age did your disorder become a daily issue? *

21

Who were you before your illness became debilitating? *

I was ridiculously busy lol! I had just finished my university degree (Bachelor of Fine Arts) and was working full time as a charitable fundraiser. I had also moved from the east to west coast of Canada and had plans to travel and backpack around the world with my previous partner.

What would you do if you were not dealing with your invisible illness? *

I would love to work again haha as lame as that is! After my pain became more chronic, I started running live painting events in Victoria & Vancouver BC. It accommodated the pain since I could mostly work from home, while I was trying to get an accurate diagnosis. As my pain became worse though & I received the TOS diagnosis, I had to make some changes so, I left a job I loved. I also am a painter with arm pain lol the irony is real, so I haven’t been able to make as much art as I’d like to over the past few years. Or be as social as others my age (especially with being sober for health reasons too oy). In the future I would love to maybe do a Masters in Fine Arts, or even become a tattoo artist!!! But it’s mostly up to my body at this point, which is really hard to plan around.

What would you like people to know about your daily life? *

It’s really difficult & chronic pain is painfully consistent. For years I was misdiagnosed and brushed off since my symptoms are invisible. I had so many scans and tests done but they were all normal. I saw countless specialists who said they couldn’t help me, and tried every possible painful treatment with no success. It really felt like I was going to be in pain forever. I had to keep advocating until finally I was diagnosed with a rare illness, but there’s no cure. I felt alone for a really long time and have lost a lot due to illness, so I just want others to know that it’s okay to not be okay! Your pain is 150% valid and just keep trying to take care of yourself the best you can.

What would make living and moving in the world easier for you? *

Less pain in my arms! Thankfully I recently had major surgery which has really helped my symptoms! In the past six months I’ve had both my first ribs removed to alleviate the compression of the nerves and veins that go into my arms. There was no guarantee it would help, but my recovery has actually been really great! Super painful lol but impressively worth it! After years I finally have some relief. Now I just have to focus on continuing to recover and try to regain what I’ve lost while also not overdoing it. Easy right?lol

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I am beyond excited for you to listen to this interview with Emily Guy Birkin. Being sick in any country is expensive. No matter where you are there is time off work and a lowering of energy. A new chronic illness or disability diagnosis can be terrifying for so many reasons but one of them might be something you can control and prepare for, financial.

Emily and I will cover some of the ways to budget with fixed income, tools for what to do if you are still working, and ways to financially protect yourself and your family.

If you would like to know more about Emily please visit her website.

Financial Apps We talked About:

Mint

Acorn

WealthFront

Financial Planning as a caregiver: Estate Lawyer

Roth IRA

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Raquel Hellenga is a Life and Business Coach for entrepreneurs and creatives with chronic illness. Diagnosed with juvenile rheumatoid arthritis as a child, she has had chronic illness for over twenty years. She has an undergraduate degree and Master’s Degree in Organizational Communication and is a proud member of the LGBTQI+ community. Her practice involves working with people one-on-one to help them build sustainable businesses that work with their chronic illnesses, not against them. In this episode, she tells her story learning to accept her chronic illness and how it helped her find her path in life. She discusses the importance of mindset and how you can learn to own your illness and work with it to build the life you want. Her message to fellow spoonies is one of compassion and hope.

Visit: www.raquelhellenga.com

Time Stamps:

4:20 – Her diagnosis of juvenile rheumatoid arthritis

5:35 – How accepting our limitations is the gateway to the business and lives we want

6:58 – The year she was diagnosed

7:16 – How her diagnosis affected her family

8:18 – On her pediatric rheumatologist

9:10 – On bullying by other girls

10:07 – The importance of exercise and chronic illness

10:35 – Her temporary remission in her teens

15:06 – Admitting the long-term nature of her illness in adulthood

15:32 – Her decade of doubling down and fighting the truth of her illness

16:21 – Her work as an adjunct communications professor that led to burnouts and flares

16:55 – The effect of auto-immune disease

17:33 – Her realization that she physically could not continue her current path and how it led to her business

19:45 – Baby Yoda

20:33 – Her career as a Life Coach for chronically ill creatives and entrepreneurs

21:14 – What Hellenga does vs what she doesn’t do in her practice

23:28 – How she helps her clients

25:23 – The importance of being honest with ourselves about how to be successful without being in constant flare

26:51 – Stories of people she’s worked with

28:21 – Denial and chronic illness

28:50 – Admitting chronic illness to take ownership of it

31:03 – Unlearning people-pleasing

32:05 – Advantages of being chronically ill

32:49 – The value of a willingness to be misunderstood

42:25 – Coaches vs consultants

52:50 – The value of taking breaks from personal development

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Important Note:

According to a 2017 RAND study, as of 2014, 60 percent of Americans had at least one chronic condition, and 42 percent had multiple chronic conditions. These proportions have held steady since 2008. 

 As used in the RAND study, it includes any physical or mental health condition that lasts more than one year and either limits ability or requires ongoing treatment. That means high cholesterol and high blood pressure, anxiety and arthritis, heart disease and diabetes.

RAND researchers used data from a national survey on health care expenditures to compile a chartbook with the most up-to-date numbers on the cost and prevalence of such chronic conditions. Their estimates suggest that nearly 150 million Americans are living with at least one chronic condition; around 100 million of them have more than one. And nearly 30 million are living, day in and day out, with five chronic conditions or more.

Those at the highest end of the scale, with five or more conditions, represent about 12 percent of the U.S. adult population, but account for more than 40 percent of U.S. health spending, the RAND study showed.

1. Financial Cost:
   1. Repeated trips to the doctor each with its own co-pay.
   2. Seeing specialists, which in addition to copays, sometimes require travel to other parts of your state or even other states. 
   3. Tests after tests.
   4. Experimental procedures, not usually covered by insurance
   5. Second opinions
   6. Cost of prescriptions, even with insurance can be excessive. 
   7. Cost of medical supplies, over-the-counter meds, and medical equipment.
   8. Cost of special foods (I can speak from experience that trying to find foods that are dairy-free or buying dairy-free replacements are much more expensive.)
   9. Taking a lot of time off work for all of these doctor appointments.
   10. Loss of income if you cannot work / cannot keep a job.
   11. Cost of alternative treatments (like acupuncture, reflexology, chiropractic care because you are desperate to find something that helps with pain) that are typically not covered by regular health insurance.
   12. Therapy for self and family
   13. Cost of more expensive everything dyson v7, cars that fit wheelchairs, wheelchairs and canes, help, ready made meals, beds that adjust, disability lawyers,
2. Physical Cost:
   1. Harder time accessing help because people don’t believe you need it.
   2. Not “officially” disabled, so unable to use assistive devices everywhere. (Disneyland and my walkstool)
   3. Limited job prospects (many employers don’t like to make accomodations for things that they cannot see.)
   4. Overdoing it because you are trying to hide your disability / trying to live a normal life for just a few hours and thus paying for it for days afterwards
   5. Harder time doing simple tasks that you feel you should be taking care of (cleaning house, cooking, etc)
   6. Lost time to getting and sorting meds every week, researching treatments, being your own advocate with medical system (How many hours have you spent on the phone talking with medical professionals, Monica?)
   7.  
3. Emotional Cost:
   1. Conscious / unconscious need to act like nothing wrong, even on bad days.
   2. Embarrassment at asking for help or for special accommodations since your illness is not visible especially if they fear it affecting their job.
   3. Having to explain your illness to strangers because they don’t believe anything is wrong with you / think you are faking it.
   4. Strain on relationships when others have to do more because you cannot.
   5. Self loathing from needing someone to take care of you
   6. Being self-conscious because experience has taught you that people don’t believe you when you say you have an illness
   7. Isolation and loneliness from being home all day while friends and family are at work. 
   8. Missed moments with family and friends because you aren’t well enough to be there. (Look at how many times we’ve tried to arrange a trip to wine country or how many times Scott and David have gone out without me because I was sick and couldn’t go.
   9. Depression 

Links:

1. https://www.rand.org/blog/rand-review/2017/07/chronic-conditions-in-america-price-and-prevalence.html
2. https://themighty.com/2016/12/cost-expenses-having-chronic-disease/
3. https://www.pinterest.com/pin/295267319303446311/
4. http://www.mydiabeticheart.com/2017/05/16/the-costs-of-a-chronic-illness/
5. https://www.sciencedaily.com/releases/2012/09/120911091100.htm
6. http://thehill.com/opinion/healthcare/352032-fibromyalgia-an-invisible-disease-with-a-devastating-toll
7. https://www.psychologytoday.com/us/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness
8. POV about costs from a woman in England: https://www.youtube.com/watch?v=qhnZVjEQKSM

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Life can be full of kismet. I just started doing live recording on ZubiaLive about chronic illness and trying to live a life and the site wanted to connect with LinkdIn. I have not been active on LinkdIn since I was a photographer. So I did my best to create a decent profile for Invisible Not Broken Podcast. In less than an hour I had gotten a lovely email from a Pain Management Doctors PA. who also has Ehlers Danlos Syndrome. A fellow zebra who knows things from the other side of the stethoscope? I grabbed her for an interview the very next day!

I had some other things to post but this is far too important. If you want to skip right to the point on pain management lists and what to do or say to have a better emergency room experience go to minute 26 and keep listening. We meander a bit but you will get what you need. If you have the time listen all the way through. This woman has a way of breaking things down and doctor PTSD might be my new favorite phrase.

Links

Ehlers Danlos Syndrome

CSF Leak

Krantom I wish I had a better source for this but getting information on Krantom for pain management is not easy. We are in no way endorsing any particular pain management I think we would all just like unbiased pain management information.

California Taxes on Medical Marijuana (call your congressperson or Senator)

VA Opioid Restrictions

CURE

Regan Era Mental Health Policies and California

Links

Ehlers Danlos Syndrome

CFS Leak

Krantom I wish I had a better source for this but getting information on Krantom for pain management is not easy. We are in no way endorsing any particular pain management I think we would all just like unbiased pain management information.

California Taxes on Medical Marijuana (call your congressperson or Senator)

VA Opioid Restrictions

Website/Blog, Twitter, & Instagram Handle

MypainIQ.com (in progress), twitter: @brianna3207, IG:@Brianna_pa.c

What is your disorder? *

hEDS, spinal CSF leak, POTS, dysautonomia

At what age did your disorder become a daily issue? *

26

Who were you before your illness became debilitating? *

13

What would you do if you were not dealing with your invisible illness? *

Probably would still be chasing happiness and continuing my negative self- talk

What would you like people to know about your daily life? *

It's hard! The suff most people take for granted is often a really big deal if I can accomplish it that day! Also my degree of functionality is not by accident. I literally spend hours a day doing PT, meditation, organic, GF, non dairy meal prep, etc.

What would make living and moving in the world easier for you? *

If more people were kind to each other! And if healthcare providers werent held hostage by insurance, treatment would be so much more timely and competent

Do you have any life hacks? *

Lots of pain hacks (a whole other interview's worth!), kindness, medical form for the ER (I'll send the word doc), meditation

What kind of support do you get from family or friends? *

Amaaaazing support from my hubby. My brother is awesome and so are my parents/ inlaws. I have a great employer and solid group of friends

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? *

All the time! The time the ER doc said I didn't have EDS bc my skin wasn't stretchy enough. And my patients dont believe how sick I am

How has your invisible illness affected your relationships? *

Yes, but for the better. I am kinder to myself, surrounded by more genuine and accepting humans, and the toxic/superficial people have sashayed away!

Is there anything you are afraid to tell people in your life? *

I think I'm afraid that people can't handle deep convos about morality and disability.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes! I essentially have to prove how sick I am

What is your best coping mechanism? *

Meditation for the mind, cannabis and exercise for the body

What are you the most concerned about and thehopeful for in the future? *

I'm concerned about the lack of treatment for my fellow zebras, but I'm hopeful that I can help change that!

What is your favorite swear word?

Fuck!

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.

Gender bias in medicine, opioid hysteria negatively affecting pain patients, cannabis as a viable alternative

What is the hardest and/or best lesson your condition has taught you?

I've learned to view each day as a gift!

What is the best purchase under $100 that helped your life

My journal!

CURE

Regan Era Mental Health Policies and California

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pamelajessen.com, @pamjessen, pamelajessen1

Name *

Pamela Jessen

Gender or Pronoun For Us to Use

Female

Male

Prefer not to say

they

Other:

Chronic Pain

Chronic Fatigue from Fibromyalgia

Osteoarthritis

Myofascial Pain

a spinal condition called D.I.S.H.,

Diabetes Type 2

Gastroparesis

Bipolar Disorder

Hypothyroidism

Atypical Trigeminal Neuralgia

15

I was an Administrative Specialist and Certified Event Planner

I would still be working, probably in Retail Support or as an Executive Assistant, and I'd still be singing in my barbershop chorus and quartet

It's mostly about pacing and resting. I do a lot of my life on the computer with blogging and volunteering.

If the world was more accessible, that would be great. I use a walker when I'm out and occasionally a wheelchair and life is hard when you are mobility impaired.

Not really...just pacing and staying grateful for the good things in life

Excellent support, my husband is wonderful and takes care of a lot around the house that I can't do, and my friends are good listeners!

Yes, because most of my illnesses are invisible, it can be easy to say "you look fine", but because I use a cane and/or walker, people can tell I have some health issues. Before I used the cane, especially at work, people wouldn't believe me, because I'd still be hauling mailing boxes around and lifting files and stuff, or items for events. I didn't want to show any weaknesses in front of others.

No, I've been very lucky. It does affect my sex life, but not my overall relationship with my husband.

I have had suicidal thoughts in the past and that's scary to talk about. There's usually a depression that comes with chronic illness and I haven't been immune to that.

I have great doctors and haven't personally had a problem, but I know of many who have.

Prayer, meditation, pacing and medications.

I'm most concerned about my health continuing to spiral downwards and losing my ability to do "normal' things. I'm most hopeful about the new research into chronic pain and the advances that might be coming to help us.

I'm very proud of my volunteer work so would like to make sure that's mentioned.

That There Is Always Hope!!!

The lapboard I use with my Macbook pro so I can live and direct my life from my recliner.

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Lauren Selfridge had remitting MS is a therapist in the SF Bay Area and runs a wonderful chronic illness podcast called This Is Not What I Ordered.

To be VERY clear Lauren is on the calmer side of the spectrum of MS that though has bad days at this time she is still able to continue to work and run a GREAT Podcast This Is Not What I Ordered 

Great tech explanation of MS

Some VERY good information about MS diagnosis and tests

Stress is the doctors new go to instead of “hysteria”

Don’t be afraid to DEMAND a test that you know you need

Spinal Tap is much more fun as a movie than as a medical test, click here to see what I mean. HERE

Sorry real life barking pug decided to be a “helper dog” and be a part of the interview

The amazing kryptonite of the white coat that can turn the feistiest of us into terrified children

Call to Drs. for interviewees I would love to see the other side of sick world.

Yes, Monica is a complete Neil Gaiman. There is no denying it. Someday Dr. Who will sponsor this podcast when they know how many of us spoonies watch obsessively on our stay in bed days.

All about taking advantage of the good low symptom times. The ups and the fears of positive low symptom times.

What is it like when you are different than most of the people who have your disorder, hint it makes it difficult to make long-term choices.

Some really awesome advice Monica’s dad gave her maybe a tad too young. Yay, my dad!

Some great career choices for the chronic spoonie

Monica’s mom is awesome and might be a future guest to talk about being a caregiver for an adult disabled child.

Spoonie decisions for one’s work and social life, hint a bit like Sophie's Choice

Chronic illness and the kick in the tail for life experiences

Public transportation and chronic illness Thank you Uber and Lyft

The epic fight with a Benadryl IV trust me it is chronic illness gallows humor hilarious 

Google Image search is not always your friend when you have a chronic illness

The calming effects of watching aquariums or paint on YouTube

What it is like to hope on horizons with a well-funded disorder

Therapy and chronic illness some of the up and downsides of group therapy and online support groups Lauren's Facebook Group This Is Not What I Ordered

The importance of social media and access to others for chronic illness and for teens.

The physical and social isolation of chronic illness 

The body perfection model as the body is a reflection of who you are as a person and what happens when your body goes rogue

Loving What Is Byron Katie. My new favorite quote, "It’s not your job to like me it’s mine.”

"You don’t have a soul. You are a soul. You have a body." CS. Lewis. This is the real quote I mangled. Til We Have Faces

Chronic illness is transformative and not always in a bad way.

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Grieving your health and living a full heart at the same time. A real talk about grieving, grieving a lifestyle, a person, or a healthy body.

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Website/Blog, Twitter, & Instagram Handle

Instagram: @_tylershea_

Name *

Tyler Corella

What is your disorder? *

I have multiple (5 total), but my most prevalent one would be asthma. As of today (Not including prematurity affects that are no longer frequent): -Asthma/Mass Lung Scarring Tissue/Obstructive Pulmonary Disease Types of asthma: •Adult on-set Asthma •Allergic Asthma •Asthma/COPD Overlap •Exercise Induced Bronchoconstriction •Occupational Asthma Most adults only suffer from 1 or 2 types, as they may only be caused my certain things. I myself, suffer from all 5 categories. -Retinopathy/Amblyopia/Partial Eye Blindness -Eczema/Atopic Dermatitis -Cold Urticaria -Chronic Rhinitis/Primary Immune-Deficiency

At what age did your disorder become a daily issue? *

1

Who were you before your illness became debilitating? *

I’ve had it my entire life, so unfortunately, that is not a question I can faithfully answer. But, I believed I would have been more outgoing and more spontaneous with my younger life.

What would you do if you were not dealing with your invisible illness? *

I would be more of a risk-taker, for sure. It was something I just recently learned myself as I took the biggest step out of my comfort zone I’ve taken in my life by joining a Track Team while I was a senior in HighSchool 2 years ago. I wanted to prove I could do it with my condition and mass amount of scar tissue that unconsciously held me back as a child and teenager. Long story short, that opportunity turned into one of the greatest accomplishments of my life, and it all happened because I chose to believe in changing my limits.

What would you like people to know about your daily life? *

That lung conditions are different for everyone. That it is a privilege to be able to have what you have in terms of health. I’d also like to be able to educate people on prematurity as a whole, rather than just one condition that came from it, because it in itself, is a lifelong battle.

What would make living and moving in the world easier for you? *

While tremendous health advancements have been made in terms of the last 20 years, there is always room for improvement. Luckily for asthma and many other disabilities, handheld devices are available for quick and easy relief in emergencies. In this case, inhalers. For asthma sufferers, a machine known as a nebulizer is an electric device that is vaporized into a mask. Also known as a breathing treatment. I’ve been in multiple situations where I’ve been without a nebulizer or somewhere where I can plug it up, and have had to rely solely on my inhaler. Nebulizers give a higher dose of medication in emergencies but aren’t always accessible. It would be a lot easier to have handheld devices that can require the same amount of medication without being dependent on electricity, space or accessibility, as with most.

Do you have any life hacks? *

I have too many too count! A few of them include using humidifiers to keep the air warm, wearing scarves around my mouth, pocket medication on hand, Medical ID on person, and always taking allergy medication. All of these help to prevent an attack from different triggers.

What kind of support do you get from family or friends? *

My family and friends are amazingly supportive! Everyone is aware and is always looking out for my well being in situations that may cause an attack.

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? *

With asthma, no. I know with that condition it’s unlikely because it’s such a common one that millions of others suffer with, so it’s more conclusive to those who don’t have it. With others, yes. But thankfully, only once. A friend of mine had questioned why I was always sitting in the back knowing I had “partial eye blindness”, almost as if he was questioning the validity of my condition. While it didn’t bother me much, it only concerned me that I couldn’t explain it in a way he would understand. I feel like this is a most for chronic illness, especially invisible ones. Personally, I don’t use the word “invisible”. Like I said, asthma is so common which makes it easy to appeal to others. I won’t know the true strength of someone who deals with a serious, yet rare invisible illness in which they find themselves trapped. Asthma has its limits, but it not being believed, isn’t one of them.

How has your chronic illness affected your relationships? *

As stated back in the last question, I don’t have this sense of not being heard about my disability, because it’s so common to society. My illness only affects me at the end of the day and has thankfully never put a strain on someone else.

Is there anything you are afraid to tell people in your life? *

So far, no. I became a Youth Leader with the March of Dimes and have openly shared my story, as well as my moms, with my family, friends, teachers, and even complete strangers across the world. I wanted to take my story and turn it into hope for other children in terms of prematurity and their separate, yet unique disabilities, If any.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

No, nor has it ever. I am blessed to say I don’t fall into that sub-category.

What is your best coping mechanism? *

My best coping mechanism for me in terms of asthma as a whole, would be learning to manage. The less managed, the more likely an attack will happen. I always ensure I know what I’m paying for medication, when, how much, dosages, ect, so that way I never find myself without it. Educating yourself as much as possible not only helps prevention, but helps to emotionally stabilize you in the future.

What are you the most concerned about and the most hopeful for in the future? *

I’m most hopeful about the opportunities it’ll bring. Without my prematurity, or asthma, I would have never leaped into the things I did, or joined the things I joined. It allowed me to have a real gratification for a healthy lifestyle, which is something I can wait to continue on in my adult years.

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.

As stated, I was a Youth Leader for the March of Dimes, but I am not any longer. I feel as though service is a great thing to share, especially with other minors who’re looking to get involved in something that personally affects them.

What is the hardest and/or best lesson your condition has taught you?

The best lesson that my condition(s) has taught me, is that I am more than capable of doing what everyone else can. The only person standing in my way is me.

What is the best purchase under $100 that helped your life

The best purchase I made under $100 that helped my life, was a journal! It helped me to stay organized with things I needed to remember in terms of prevention and emergencies.

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*No sponsorships, personal recommendations only!*

• Rower machine
• Short stories, like “Disability Visibility” and Kelly Link (surreal fiction)
• VR headset – the Oculus
• Photobook (google photos or Shutterfly)
• Fancy journals, like Passion Planner
• Gratitude letters to friends and family
• Digital Cards (TouchNote)
• Insomnia Cookies!
• Masterclass (current sale of two for one!) – check out ‘Gangster Gardener’ 

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TITLE: Diagnosing fibromyalgia by physical exam and the power of the guaifenesin protocol - Dr. Congdon and Eva of Wellacopia

Diagnosing fibromyalgia by physical exam - Dr. Congdon and Eva of Wellacopia 

(for the artwork only)

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Get matched with your perfect practitioner at Wellacopia.com

If you are unable to find a good match in your location yet, Eva will do the personalized matching for you anywhere in the USA. 

Text: 1-646-883-3022 or Email: Contact@Wellacopia.com

To contact or learn more from Dr. Melissa Congdon, please visit MelissaCongdonMD.com

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1. What is your profession?

I am a physician who treats children and adults with fibromyalgia. I am a board-certified pediatrician who was in private practice for 18 years until severe fibromyalgia symptoms forced me to retire from medicine. After going on the guaifenesin protocol and getting acupuncture my symptoms dramatically declined, enabling me to return to practice medicine 20 months after I “retired.” My fibromyalgia doctor, Dr. Paul St. Amand at Harbor UCLA medical center suggested that I not go back to practicing general pediatrics but become a fibromyalgia consultant instead. I trained with him and have been doing fibromyalgia consulting for children and adults since 2010.

1. What is your illness(es)? 

Fibromyalgia

1. Where do you work? 

The San Francisco Bay Area

1. Who do you work with? 

I am in solo practice, but I communicate with my mentor Dr. St. Amand frequently. I also keep in touch with many integrative medicine providers and other health care practitioners to share insights about treatments and ways to help patients feel better

1. How did your illness shape your career?

I was sick for a long time before I was diagnosed with fibromyalgia. I have severe fatigue, dizziness, 15 migraines a month, chronic neck and shoulder pain, and irritable bowel symptoms. I thought surely I must be dying because I felt so sick and doctors could not figure out what was wrong with me. My children were young at this time, and I hoped that I would not pass away until my youngest was at least 7 years old, because I thought by that age she would remember her mother’s love. So I have been to that dark hopeless place that chronic illness can lead a person to, and I went from mostly housebound to feeling well again. My illness motivated me to help others do the same. It feels so good to feel good again!

1. What do you do when you don't know what to do about a patient?

 First I like to think and meditate about it, then if I can’t come up with a treatment plan I will reach out to my network of healthcare providers to get insight.

1. Are you/were you open about your illness with patients?

YES. My patients tell me it is a great help to them that I truly understand what it feels like to have fibromyalgia (physically and emotionally), and that that is one of the reasons they have chosen me to help them feel better.

1. What are you most passionate about in regards to your work?

Two things. First of all, how to make an accurate diagnosis by physical exam, and no, I am not talking about the inaccurate tender point exam. My mentor, Dr. Paul St. Amand, taught me how to diagnose fibromyalgia using a physical exam technique called “mapping.” He has found that everyone with fibromyalgia has a pattern of very small swollen and contracted muscles along their left anterior thigh. He taught me how to detect them, and if a patient has these swellings, then they have fibromyalgia! It is not complicated! These swellings are so small and are not tender, so most people with fibromyalgia don't realize they are there -- but they are super easy to feel once you have been trained in this technique.

Secondly, I love helping people with fibromyalgia decrease their pain, improve their mood, and increase their energy. There are a lot of helpful tips I can give them to achieve this, but one of the most life changing treatments I have found for fibromyalgia is the guaifenesin protocol. Guaifenesin is an expectorant (it is the active ingredient in Mucinex) and used in the right form (long acting dye free guaifenesin) and avoiding products that can block its action, guaifenesin can decrease our muscle spasm and pain over time (as well as increase energy, improve mood, intestinal function, etc). After I dramatically improved using the guaifenesin protocol, my mentor taught me how to administer the protocol to others. It has been so successful patients thank me every month for giving them their lives back! I feel so thankful to have found the guaifenesin protocol and thankful for the opportunity to help others with fibromyalgia feel better.

1. How do you/did you handle flares while at work? 

I am able to set my own schedule, so if I need more down time I insert a break in my schedule.

1. How do you did you handle being a patient and a professional in your personal life? 

When I am at work I am focusing on my patient, and I only bring up my personal experiences if my patient asks.

1. Do you tell your patients what you tell yourself / do you practice what you preach? For the most part! I am committed to helping my patients feel better, and sometimes I spend more than the allotted time for the appointment answering patient’s questions. This can cause me to miss lunch!

1. Has your condition made you more or less empathetic to those like you? 

MORE empathetic! I have come to understand that some healthcare professionals do not believe fibromyalgia is a real medical condition. They think that we are depressed, or stressed, or just lazy. I even heard one rheumatologist refer to Fibromyalgia as “The F word!” I KNOW fibromyalgia is real because I feel the symptoms (plus there are hundreds of studies indicating that those of us with fibromyalgia have unique physical and biochemical findings). I am passionate about helping validate my patients symptoms and help empower them to get the care they deserve.

1. How do you research conditions? on your own? drug companies? medical journals? Colleagues? how do you convey this knowledge to patients? 

Every morning I go on a physician's site called Doximity to check what new research has been done on fibromyalgia, I also Google fibromyalgia and get a compendium of articles from various sources about what is happening the field of fibromyalgia and chronic pain. I talk to colleague regularly, I post every Tuesday on my professional FB page (usually sharing new research results or an article about fibromyalgia) and I send out newsletters on a regular basis to my patients updating them on the latest developments in the field.

1. How do you feel about holistic medicine? what does it mean to you? 

The definition of holistic medicine I like best is that Holistic medicine is a form of healing that considers the whole person -- body, mind, spirit, and emotions -- in the quest for optimal health and wellness. ... In this way, if people have imbalances (physical, emotional, or spiritual) in their lives, it can negatively affect their overall health. This is from WebMD. I use the most natural methods and techniques with the fewest side effects when I treat my patients.

1. Tell us about a special experience with a patient (uplifting)

Ahh, Stefanie comes to mind. She is a wildlife biologist who developed pain as a child. Her doctors couldn't figure out what was wrong with her. She was having so many migraines and so much pain in her body her doctors told her “well, you are just one of those people with pain.” After 9 months on the guaifenesin protocol she felt a “dramatic decrease” in the pain she was in an increase in energy, so much so that she was able to do more and have the confidence to have a baby, and she did! To see her in the office holding her baby in her arms was so amazing. She said her improvement on guaifenesin “feels like a miracle, it just transformed my life.” There are so many stories like Stefanie’s of symptom improvement on the guaifenesin protocol! I produced a documentary called Fibromyalgia: Getting Our Lives Back--Success Stories on the Guaifenesin Protocol: https://www.youtube.com/watch?v=DtPPoOBeXTM for people who want to learn more.

1. If you had one message to send out to every chronic illness patient out there what would it be? 

Don’t give up! You are not alone! Keep searching to find your tribe-- supportive healthcare practitioners that are experts in your condition and who are committed to working hard to help you feel better. 

The documentary Fibromyalgia: Getting Our Lives Back—Success Stories on the Guaifenesin Protocol: https://www.youtube.com/watch?v=DtPPoOBeXTM 

Dr. St. Amand’s website: http://www.fibromyalgiatreatment.com/

Dr. St. Amand’s book What Your Doctor May Not Tell You About Fibromyalgia: http://www.fibromyalgiatreatment.com/books-and-dvds.html and https://www.amazon.com/What-Your-Doctor-About-Fibromyalgia/dp/1455502715/ref=pd_lpo_sbs_14_t_0?_encoding=UTF8&psc=1&refRID=0PKW88RSY6AXQDFFF0C1 This is the link to the latest edition

Online Guaifenesin Support Group: http://www.fibromyalgiatreatment.com/online-support-group.html 

Fibromyalgia Facebook Support Group for those on the Guaifenesin Protocol: https://www.facebook.com/groups/fibrofightersonguaifenesin/?epa=SEARCH_BOX

Where to purchase guaifenesin and personal care products that do not block guaifenesin’s action: http://www.fibropharmacy.com/

Websites devoted to selling salicylate free products: https://www.andrearose.com/sensitive-skin-care-basics-s/100.htm and https://www.cleure.com/Default.asp 

Note: It is common to feel intermittently worse during the first 4 months on the protocol. We are here with tips to help you feel better during this time. 

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Kyros' perfectly organized show notes that I systematiclly disorganized.

Misconceptions about Invisible Illnesses

Start with an explanation of Spoon Theory! https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Things we’re tired of hearing all the time:

1. You don’t look sick. /  You look great. - When someone says, “But you LOOK good,” we really hear, “But, I don’t believe you, because I can’t see it.”
   1. That if you use a wheelchair, you have to use it all the time.
   2. That if you have a handicap placard, you must be using someone else's, because you can’t be the one who is handicapped.
   3. So, are you retired / on disability then? Just because you are disabled, doesn’t mean you can get disability (SSI).
   4. Just because a person has a disability does not mean they are disabled.  Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time, but struggle to get through their day, with little or no energy for other things. While still others may be unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities or need assistance with their care.
   5. Therefore, if a person is displaying a license to park in an accessible parking space, try offering a hand, instead of a visual judgment. After all…the people you are graciously intending to defend, may be standing right in front of you!”
   6. In 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker
      1. https://invisibledisabilities.org/ida-getting-the-word-out-about-invisible-disabilities/defining-invisible-disability/
      2. https://www.census.gov/sipp/
2. But you were fine yesterday.
   1. You just want attention
   2. Munchausen syndrome or ‘factitious disorder’ – where people feign illness to gain attention or sympathy.”
3. If you were really in that much pain it would show.
   1. A lot of pressure to not show pain / anything but a positive emotion.
4. You’re too young to be disabled.
5. It must be nice to get to stay home all day. / I wish I could stay home all day.
   1. smoking pot all day.
   2. We’re lazy. A drain on society. Bad parents.
   3. Just because we are home, we can’t contribute.
   4. Many people don’t realize that when you are not working, there are repercussions. 
      1. No social contact
      2. Lonliness
      3. The benefits of interacting with people disappear
      4. Financial hardships
      5. Social isolation
      6. Negative stereotypes - Working is way easier that being disabled
      7. Have to contend with not only losing the ability to do the things you want to do, but also fight with loved ones who sometimes don’t believe us, or understand us.
      8. I’m mourning the loss of the life I lived before, while simultaneously fighting friends and family who treat me like it’s not real, not that bad, or that I’m being lazy.
   5. What do you do all day?
   6. You must have so much free time.
   7. Pressure to make the most of your free time.
6. Why don’t you just go to the hospital if you hurt that much. / Aren’t you better yet? 
   1. Doesn’t your insurance cover all that?
   2. Medication is a double edge sword. Sometimes you have to take 1 pill for a problem and then another for the side-effect of that first pill, and so on and so on.
   3. The assumption that the Doctor always knows best, because offtimes, you might be the one who knows the most about your problem/ your doctor may never have heard of your problem before.
   4. That doctors will keep trying to figure out what’s wrong with you without being hounded to do so.
   5. We didn’t do anything to deserve this or you brought it on yourself
   6. And this gets worse with age/being overweight because they blame everything on your age / weight
7. You must feel so guilty about:
   1. Taking care of the kids
   2. Taking care of the house
   3. Not contributing
   4. Not working / supporting yourself
   5. Draining resources from the family
   6. Being a burden
   7. Not being able to play with the pet / walk pets.
8. Just because I’m on opioids / marijuana does not mean I’m a drug addict.
9. People think they understand what pain / exhaustion are like. It’s different when it’s EVERY day, not just once in awhile.
10. 10.You’re so inspiring. (Well done not dying!) and trying to live up to that.
    1. You should either be pollyanna or crying all the time.
    2. Your partner must be a saint for sticking with you through this or marrying you anyway.
    3. We don’t want to give up. We make the effort to smile, laugh, pretend that everything is okay, look our best, and try to enjoy life as best as we can.
    4. This is a double edged sword though. By trying our hardest to not show pain or illness, we end up feeding into the prevailing assumption that we aren’t really in pain or sick. People assume that since we look good, we are doing better / not hurting. This couldn’t be farther from the truth. 
    5. Sometimes the reason we try so hard to look good / not show our illness is that WE want to forget, even if just for a moment, how hard our daily life is and how much we miss the life we used to have.

https://undark.org/article/mystery-diseases-syndromes-health-care/

https://www.youtube.com/user/invisiblenomoretv

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We have been so lucky and I am so honored that Invisible Not Broken has listeners from Africa, India, China, Russia, South Korea, Australia, the United Kingdom, South America, and Mexico basically every continent but Antarctica!

I just have to admit I’m super curious what life is like for all of you in other countries if you have chronic pain, chronic illness, or invisible illness. I'm in the United States and all I know about life with a disability from other states and countries is what I’ve heard from people interviewed for the podcast.

So my challenge is to take a video or photo every day for 30 days to show the world what life is like for you and just tag us @invisiblenotbrk And don’t forget to #30dayspooniechallenge  and make sure you share this with the friends get everyone in on it.

Don’t forget to hit that subscribe button and make sure you share us with your friends family support groups Facebook groups we really need your help!

• What I am using
• Adobe Spark Video APP
• IPhone 7 Plus (Getting desperate to switch to Google Pixl)
• Relentless and my children would say annoying optimism

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Composer (and medical device inventor) Jordan Plotner came on to chronic illness podcast Invisible Not Broken to discuss his upcoming project: Resonance. A musical piece that encompasses his life with Ehlers Danlos and recovery from Chiari Malformation Surgery.

Website/Blog, Twitter, & Instagram Handle

https://www.jordanplotner.com/theresonanceproject

What is your disorder? *

Ehlers-Danlos Syndrome

At what age did your disorder become a daily issue? *

14

Who were you before your illness became debilitating? *

Still me!

What would you do if you were not dealing with your invisible illness? *

Living same life as I do now, just a bit more gracefully.

What would you like people to know about your daily life? *

Not every day is the same. Also, there are countless EDS-induced bizarre situations which can be quite painful AND highly entertaining.

What would make living and moving in the world easier for you? *

Reduced Uber fare for disability!

Do you have any life hacks? *

Many opportunities arise when one writes letters with pen and paper. Also, put maple syrup in coffee rather than sugar.

What kind of support do you get from family or friends? *

Love from family and close friends, and ignorance (not always negative) from others.

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 most of the time I anticipate the situation and avoid before any confrontation ensues. But pretty much all of high school...

How has your chronic illness affected your relationships? *

It is undeniably a third wheel. It is also quite sneaky, and loves to make surprise entrances.

Is there anything you are afraid to tell people in your life? *

Nope.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Very much so.

What is your best coping mechanism? *

I'd say working. I am a composer/writer so work is just at my desk on my own time. But when I'm anxious/dealing with unknown, I cope by being hyper focused and productive. In terms of dealing with other people? Humor/exaggerated optimism.

What are you the most concerned about and the most hopeful for in the future? *

People becoming less curious / creative / interesting because they've grown up with all sorts of phones, and computers, and never experienced boredom / never had to find ways to entertain themselves.

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.

The Resonance Project (link attached above)

What is the hardest and/or best lesson your condition has taught you?

There's great wisdom hidden in pain.

What is the best purchase under $100 that helped your life

Blue Pilot Varsity Fountain Pen ($3.50) Shinola Large Hard Linen Journal ($24)

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Holli Margel

School of Bravery

Zapier

Trello

Fabulous IOS APP

Emily Ann Peterson, the founder of The School of Bravery, a learning lab for creative visionaries, talks to Monica Michelle on the chronic illness podcast Invisible Not Broken about Essential Hand Tremor , Hypothyroidism, her career as a cellist and her new life as an author of Bare Naked Bravery, podcast host, and coach.

What is your disorder? *

Essential Tremor & Hypothyroidism, seasonal depression sometimes too.

At what age did your disorder become a daily issue? *

24

Who were you before your illness became debilitating? *

More energetic

What would you do if you were not dealing with your invisible illness? *

Same thing! Just more of it!

What would you like people to know about your daily life? *

When I cancel an appointment, it's necessary.

What would make living and moving in the world easier for you? *

Slower pace from everyone else.

Do you have any life hacks? *

Yes! Naps! and automating EVERYTHING! and contingency plans!

What kind of support do you get from family or friends? *

I've got a couple great girlfriends ready for a text convo anytime!

How has your invisible illness affected your relationships? *

I can't be as outgoing on my "bad days."

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Sort of? I'm overweight, so I get those lose-your-weight talks all the time, but the weight is related to living with a low thyroid for so many years. Ugh, so frustrating.

What is your best coping mechanism? *

Naps. Seriously.

What are you the most concerned about and the hopeful for in the future? *

Concerned that the rest of the world doesn't know how good life can be at a slower pace. Concerned that those with invisible illnesses discount their potential to achieve the same things others without illness achieve.

What is your favorite swear word?

FUCK! ;-)

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 founded the School of Bravery, where I teach my clients and students how to make their bravery as friction-free as possible. It's my mission to help people know that bravery CAN be easy if we foster an environment for it!

What is the hardest and/or best lesson your condition has taught you?

I am not what I achieve. I am not what I do. I am.

What is the best purchase under $100 that helped your life

Software. Seriously. The right software can automate the most difficult things in life.

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Subjects Covered

For Part 2

Tattoos and Disability

Activism and Disability

New Mother World

Life Hacks for Disabled Moms

Disability Temper Tantrums

Labor and Delivery Disability and Race

Pregnancy and Disability

Infant and Maternal Mortality Rates for Black Women

Medical Racism and Ableism in the Medical System

Disability and Custody

Birth Story

Disabled Merch

When you get to be the test for a surgeon’s sewing skills

Disabled When Your Baby is in NICU Hospitals Need to Prepare for Disabled Mothers

Doctors Appointments and Wheelchairs

Nightlife and the Danger to Dignity When Clubs and Bars Are Not Accessible

HR620 Law

The ADA is not what you think it is

MEET WITH YOUR REPRESENTATIVES!!!!!

Ignorance is a Curable Condition

The Straw Ban Please Talk To Disabled People Before Making am Opinion

Please get me a Super Crip Shirt

I Was Mixed up and Wrong About Kenya. I am sorry please take a look at Kenya’s Disability Legislation

Carrying Us In Our Wheelchairs Does NOT Count As Access

If It Is One the Ground It is On Our Hands. Wheel Life

Traffic and Driving in the City is a Good Prep for

Website/Blog, Twitter, & Instagram Handle

www.fourwheelworkout.com, @4wheelworkout

Name *

Tiara Simmons-Mercius

Disorder Info

What is your disorder? *

I have a disability. Not a disorder. I am a double below-knee amputee. Three fingers on my right hand are partially amputated. I have invisible disabilities as well: Neuropathy and paraplegia

At what age did your disorder become a daily issue? *

1

Who were you before your illness became debilitating? *

I've always been disabled so, I guess the person I am now is who I've always been, or was growing into.

What would you do if you were not dealing with your invisible illness?  *

Much of the same things as I do now: Advocacy, activism. Working or trying to work. My invisible disabilities only affect me slightly more than my visible.

What would you like people to know about your daily life? *

It is not a life to be pitied. Yes, I have barriers, but my disabilities are not the barriers, even though they can be draining. Lack of access is; ableism is.

What would make living and moving in the world easier for you? *

More accessibility. Less pity. More opportunities for involvement.

Do you have any life hacks? *

Not really. I use anything I can find to help me reach items. I use my wheelchair footplates to help me transport items.

What kind of support do you get from family or friends? *

My husband is a huge help. He gives me a lot of support both physical and emotional.

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?  *

Sometimes. But I think what makes it more believable is the fact that I have visible disabilities, so it's not a stretch that I'd have more (to those people)

How has your chronic illness affected your relationships? *

I'm not as social as I used to be. So people do not call me or invite me out as much.

Is there anything you are afraid to tell people in your life? *

I'm generally pretty open. It's not so much WHAT I'd tell them, it's the HOW. I'm also straightforward and tend to just say what needs to be said.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

My HCPs put in my records that I'm a chronic pain patient, but they are just paying me lip service I think.

What is your best coping mechanism? *

Sleep. Sleep and music.

What are you the most concerned about and the most hopeful for in the future? *

Concerned about being a disabled parent. But also, that's what makes me hopeful. My future career as a lawyer also fits into both categories.

Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? *

Not sure. I will politely let you know during the interview.

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 be able to speak about medical racism. Being a Black disabled woman navigating healthcare and society.

What is the hardest and/or best lesson your condition has taught you?

Best lesson: I don't have to do everything.

What is the best purchase under $100 that helped your life

Crockpot. Go figure.

Recommendations

CoSleeper

Swaddle Me

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Website/Blog, Twitter, & Instagram Handle

www.bonetumorawareness.org, Twitter: @StephDinDC, FB: www.facebook.com/bonetumorawareness, IG: @stephmdaly & @bonetumorawareness

Name *

Stephanie Daly

Disorder Info

What is your disorder? *

Bone Tumor Survivor

At what age did your disorder become a daily issue? *

21

Who were you before your illness became debilitating? *

An active, young college student living in the city of Chicago that was happy, healthy ... alive, adventurous

What would you do if you were not dealing with your invisible illness? *

Be as active as possible, travel as much as possible, consider having children, consider many more activities and adventures

What would you like people to know about your daily life? *

How pain, limitations, and continuous treatments have affected my mental/emotional, physical state and how I have ‘managed’ and persevered

What would make living and moving in the world easier for you? *

Losing my leg, not working ... having tons of time to rest

Do you have any life hacks? *

Plan and prepare heavily for activities (for recovery), when in doubt - RICE (rest ice compress elevate), physical therapy = key, being your own advocate with physicians and healthcare

What kind of support do you get from family or friends? *

Protective and supportive yet still (for the lack of a better term) clueless as to what this really is like ... fantastic support from a new(er) relationship - and dependent on the friend/person depends on the level of support

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? *

Absolutely ... I get stairs when I use my handicap placard, or at work, even people doubt that I don’t have the ability to do things that I’m not able to do - therefore expectations are high and I get through it (and feel good about it) although the recovery is brutal

How has your chronic illness affected your relationships? *

I didn’t date for 10 years after being very active with dating and relationships before this all started. I have had a relationship that broke up after this all started and had another relationship that this put a lot of stress on. Friendships also are tough because tough times are when you can realize NEW friends and some that you can do without.

Is there anything you are afraid to tell people in your life? *

Absolutely ... I’m afraid to talk about my rock bottom moments when I cry myself to sleep from exhaustion, or about moments when I just want to ‘quit’ my functioning life and try to go on disability ... or even the idea of losing a limb is tough to say out loud.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

At times. Thankfully I do have scars (they’re not showing) but once I tell my story and have SOME validation, that’s better. But without those ‘facts’ to back it up, it’s definitely tough

What is your best coping mechanism? *

Everything comedy / doing things I really enjoy, music / I love going to concerts, love sports ... I also lose the group of people I have cultivated with similar conditions (bone tumor awareness): without them, I don’t know where I’d be today. They understand me the MOST by far.

What are you the most concerned about and the most hopeful for in the future? *

I am the most concerned about continual issues that are caused as a byproduct of my initial diagnosis (which I already have ... injuries in other parts of my body bc of compensating) as well as the potential of losing my leg, ... but I am hopeful for research and continuing advancements in treatments for these awful tumors. I’m also hopeful for a true love story where I feel loved unconditionally and truly taken care of by someone that isn’t related by blood.

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’d love to talk about how digital/social media has been an incredible tool for being able to cultivate a group of ppl with this rare ailment (or very similar ones) to relate to and cope with / Bone Tumor Awareness

What is the hardest and/or best lesson your condition has taught you?

I have to look out for #1 first and foremost, ... and that there isn’t an infallible/perfectly smart human (I.e. physicians) that get it right ALL THE TIME. you have to fight and be your own advocate to get the care you deserve. This has also taught me to control my finances!!! But that if you have a specific mentality I truly thing you can accomplish a lot with ‘thoughts’.

What is the best purchase under $100 that helped your life

My GRABBER! (Hilarious)

Any questions you think we should add to this list?

The story about how my condition was discovered / I’d love to put info out there for anyone that can be helpful or preventative

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We respect your privacy.

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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AprilDawn’s YouTube

AprilDawn’s Instagram

Dr. Who

David Tennent Catherine Tate Much Ado About Nothing

Two Old Goats Lotion

What is your disorder? *

Fibromyalgia, migraines, vaso vegal syncope, ptsd w/ bipolar & borderline

At what age did your disorder become a daily issue? *

22

Who were you before your illness became debilitating? *

A dancer, manager of a weekly goth event, life of the party, and drunk more than not

What would you do if you were not dealing with your invisible illness? *

I honestly don't know. If it suddenly disappeared tomorrow though I'd probably either run for office or work as an advocate for other spoonies.

What would you like people to know about your daily life? *

It's somehow mind numbingly boring and heart attack stressful at the same time. I spend at least 75% of my time either resting/healing or treating my conditions.

What would make living and moving in the world easier for you? *

More awareness and consideration for the difficulties in using a mobility aide, and more patience when my brain just can't find the information someone's asking me for. Basically, people need to be nicer to each other.

Do you have any life hacks? *

I probably have too many, but my biggest one is if I can't figure something out myself I ask for help be it filling out paperwork or figuring out how to get myself up on time in the mornings. It never hurts to get a few different perspectives on a problem, even if it only serves to make clear what doesn't work for you.

What kind of support do you get from family or friends? *

My husband and children do alot to help and support me, though both my husband and son have their own chronic physical/mental health issues, and my mother in law tries but can't quite understand so it gets frustrating. As for friends I have one or two really great spoonie friends in other countries, but there's no one local who's willing or interested in developing a friendship with the sick girl who can rarely leave her house.

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? *

Oh yeah! Most notably my immediate family. I began having noticeable symptoms at 15 and by 16 they'd decided I was faking and refused to take me to any more doctors and began to refer to my health problems as wimp's disease or laziness syndrome. Hence all the self medicating w/drinking in my 20s.

How has your invisible illness affected your relationships? *

It's made them all more difficult. It's like my health creates all these added obstacles to every kind of relationship, from romantic to platonic and even familial. It's 100% why I don't have a girlfriend right now, it's not worth the spoons to try to even find a girl willing to date a married woman.

Is there anything you are afraid to tell people in your life? *

Not like a big secret or anything, but a lot of the time I'm too afraid of upsetting or inconveniencing people to speak up when I need help. I'm working on it though. So far people haven't reacted well.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

YES!!! Some get really irritated & rude while others are so afraid of making me worse they don't even want to do anything to help.

What is your best coping mechanism? *

Distractions! Mostly watching either educational stuff, comedy, or Marvel shows & movies with a few other fandoms thrown in. #whovian4life lol

What are you the most concerned about and the most hopeful for in the future? *

I worry most that I'll miss the early signs of something serious and end up even worse (happened twice already), and I pray daily for effective treatments.

What is your favorite swear word?

GodDamnMotherFuckingShit!

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.

My baby youtube channel and living in a household with multiple invisible illnesses (Fibro, CSID, CTE*probably*, and mental health)

What is the hardest and/or best lesson your condition has taught you?

IDK if it's my conditions or just life but I've learned that everyone has trauma and that even the worst people are no different from anyone else in the fact that their past experiences have shaped who they are now, and that most people are honestly trying to do the right thing we just don't all agree on what it should be and I can and should love those people as the flawed, confused humans we all are.

What is the best purchase under $100 that helped your life

Two Old Goats lotion

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In this episode of Invisible Not Broken, we discussed reclaiming a sex life that works with chronic illness. The goal is to find out what is possible instead of what is achievable. Dr. Phillips informed the audience that sex is ultimately about pleasure not performance. Fatigue, one of the most common and most disabling symptoms of a chronic illness can lead to a decreased participation in sexual activity. People with various chronic illnesses may fear that the exertion of sexual activity may cause a progression of the illness. They may mistake the sedation experienced after climax to weakness, and so needlessly limit their sexual activity. The healthy partner of the person with a chronic illness may fear that sexual activity will worsen the severity of the symptoms and may avoid intimate physical contact. Decreased desire and arousal is associated with the cerebral plaques and also with depression. Cognitive changes (apathy and confusion) may have a profound effect on the quality of life, including sexual functioning.  Here are his tips:

·     When fatigue is a major complaint, individuals can plan sexual activity for morning when people with chronic illness generally have more energy. It is perfectly fine to plan sex! It does not have to be spontaneous! 

·     Couples also may alternate forms of sexual activity, such as oral sex and mutual masturbation. Remember, sex does not have to be about penetration…it is only one form of sex! 

·     For those with bladder incontinence can be managed by emptying the bladder immediately before or after sexual activity.

·     For individuals with bowel incontinence, sexual activity can be planned so that it precedes intestinal stimulants such as coffee and meals.

·     Decreased vaginal lubrication can be treated with water-soluble lubricants, and dysesthesias may be relieved with medication for nerve pain.

·     Vaginal lubrication is controlled by multiple pathways in the brain and spinal cord, similar to the erectile response in men. Decreased vaginal lubrication can be addressed by using generous amounts of water-soluble lubricants, such as K-Y Jelly, Replens, or Astroglide. It is not advisable to use petroleum based jellies (e.g., Vaseline ) for vaginal lubrication due to the greatly increased risk of bacterial infection.

·     Uncomfortable genital sensory disturbances, including burning, pain, or tingling, can sometimes be relieved with certain medications.I consult with medical providers almost daily in my practice about the medications my clients are prescribed. These are common medications I see prescribed.

·     Decreased genital sensation can sometimes be overcome by more vigorous stimulation, either manually, orally, or with the use of a vibrator and other sex toys. Exploring alternative sexual touches, positions, and behaviors, while searching for those that are the most pleasurable, is often very helpful. Sexual activity is all about exploring and this can make it exciting. Several online sex shops such as Come As You Are and Good Vibrations are great. 

·     Masturbation with a partner observing or participating can provide important information about ways to enhance sexual interactions. Remember, sex is about pleasure, not performance. 

·     When it comes to chronic pain, there has been real evidence that endorphin release from orgasm can alleviate pain and may possibly help people manage chronic pain. This is because endorphins block pain while enhancing parts of our brain responsible for pleasure. 

·     Oxytocin, a bonding hormone that increases when we hug have orgasms, may also have pain killing effects, according to a report by researchers from the University of Alabama at Birmingham. 

·     When you are in pain, it affects you and your partner. You don’t want to be touched for fear that you will ache even more, your partner, afraid of causing you pain, may withdraw and feel isolated. Therefore, sexual communication is important.  

 Remember, pleasure is the measure!

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Summary

In this conversation, Tisha shares her journey of living with chronic illness, emphasizing the importance of gratitude, community support, and the struggles of public perception. She discusses her experiences with autoimmune disorders, the challenges of diagnosis, and how she has reframed her relationship with her illness, focusing on empowerment rather than battle. In this conversation, the speaker shares their experiences of parenting with a disability, discussing the challenges of communicating their condition to their children and the emotional toll it takes on family dynamics. They explore the journey of finding purpose while being bedbound and the therapeutic process of writing a book about their experiences. The discussion emphasizes the importance of support systems, the need for understanding in educational settings, and the resilience required to navigate life with a disability.

Takeaways

Gratitude can be a powerful tool for coping with chronic illness.

Public perception often overlooks the struggles of those with invisible illnesses.

Community support plays a crucial role in mental health and resilience.

The journey to diagnosis can be long and fraught with challenges.

Reframing the narrative around illness can lead to empowerment.

It's important to check in on loved ones, even those who seem happy.

Sharing personal stories can help others feel less alone.

Wearing heels can be a form of self-expression and empowerment.

Language matters when discussing illness and identity.

Writing can be a therapeutic way to share one's journey. Talking to children about disabilities requires different approaches based on their age.

The emotional impact of a parent's illness can lead to complex family dynamics.

Creating a game out of challenges can help children cope with difficult situations.

Parents often feel guilt for not being able to participate in typical activities with their children.

Support from family and friends is crucial when dealing with chronic illness.

Living with a disability can lead to feelings of isolation and despair.

Finding purpose and joy in life, even from bed, is possible.

Writing about personal experiences can be a healing process.

It's important to advocate for accessibility in schools and public spaces.

Resilience and community support are key to thriving despite adversity.

Keywords

gratitude, chronic illness, public perception, diagnosis journey, living with illness, mental health, autoimmune disorders, personal stories, resilience, community support, disability, parenting, mental health, communication, writing, resilience, family dynamics, bedbound life, emotional support, personal journey

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Website/Blog, Twitter, & Instagram Handle

@eds_athlete

Name *

Kresenda Keith

What is your disorder? *

1. EDS,
2. POTS,
3. Lupus,
4. Hashimotos,
5. Craniocervical Instability,
6. Diverticulosis,
7. PCOS,
8. Endometriosis,
9. Trichotillomania,
10. GAD,
11. OCD,
12. & more lol

At what age did your disorder become a daily issue? *

29

Who were you before your illness became debilitating? *

PhD student, statistician, professor

What would you do if you were not dealing with your invisible illness? *

Likely teaching

What would you like people to know about your daily life? *

Every day is different and you never know what the day might hold so it’s important to celebrate every win of the day.

What would make living and moving in the world easier for you? *

A cool exoskeleton?

Do you have any life hacks? *

I do a lot of taping and bracing in order to help prevent subluxations

What kind of support do you get from family or friends? *

I am incredibly lucky to have truly amazing and supportive friends and family. I don’t think I would be able to do what I do if it wasn’t for them.

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? *

All too often. The Paralympic committee doesn’t believe EDS is an applicable disability to compete so I’m constantly fighting those rulings.

How has your invisible illness affected your relationships? *

I’m blessed to have a boyfriend who understands that every day has a question mark. I am certain we would be far more active if it wasn’t for my health.

Is there anything you are afraid to tell people in your life? *

How frightening every day can be. You never know if it’s the last day you get to do something.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Often they don’t believe it’s a big deal.

What is your best coping mechanism? *

Acceptance. You don’t have to like it but you have to accept it. It’s freeing. Like I accept that someday I might not get to lift anymore. I accept that someday I might not be able to walk. Accepting those hard truths helps you move forward.

What are you the most concerned about and the most hopeful for in the future? *

I’m hopeful that I will inspire other spoonies to come out and try things they were afraid of. It might be something like a walk or asking someone out on a date. It doesn’t have to be the gym. Anything. Just try something.

What is your favorite swear word?

I say fuck a lot. A lot a lot

What is the hardest and/or best lesson your condition has taught you?

To embrace every day as the last

What is the best purchase under $100 that helped your life

A tens unit. Priceless.

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Alright maybe I have listened to too many Tim Ferris Podcast episodes (no really super motivating. Give it a try if you haven't). I decided to run a personal experiment as the US has yet again made it more difficult to get pain medication even when you go to a PAIN CLINIC and pharmacies have decided that they will supersede doctors n how much and when you may have your medicine.

Right now CVS which has teamed up with Target only allow for one week of an opioid prescription at a time. This is said to be only for acute conditions but I fear that there will be issues depending on who the pharmacist is. Just think of how possible it is to drive out EVERY week when in chronic pain. Walgreens allows for once a month from the time of pick up. This means if I can't wait for my prescription and I have to wait until I can drive again I can be up to a month behind on my prescriptions.

So among the fear mongering, I decided to run an experiment. How long can I go without my pain pills? Let me be clear I have ZERO addiction issues this was strictly about how long I could handle my daily level 8-9 pain without my medication.

Anyone who knows me will tell you optimism is how I will end up getting killed (or saying the wrong thing to the wrong person.) 

I REALLY thought I could make it the entire day. What else are super high pain thresholds for?

SPOILER NOPE NOT POSSIBLE NOT HAPPENING WITH A SIDE OF DEAR GOD WHY.

It did not go well. I am afraid. I am scared that an administration that cares nothing for people will force so many of us too tired and unable to fight into a darker place where even less is possible. If you want to share this to show others what it is like to be in chronic pain without medication please feel free to share.

For the record, I have Ehlers Danlos, POTS, and Fibromyalgia

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Age *

21

What is your disorder? *

Chiari Malformation

At what age did your disorder become a daily issue? *

17

Who were you before your illness became debilitating? *

I was a high school softball athlete, with opportunities to play college ball. Until I was diagnosed with chiari malformation.

What would you do if you were not dealing with your invisible illness? *

I would be a student athlete playing college softball

What would you like people to know about your daily life? *

Struggle daily with horrible migraines, and chiari. this is what caused me to create this company and our products to help track pain and symptoms accurately.

What would make living and moving in the world easier for you? *

less migraines and pain, daily migraines make living harder.

What kind of support do you get from family or friends? *

when I got diagnosed I had a huge support system from family and friends, they did not understand what I was diagnosed with because only a few people are aware of Chiari. But they still were there for me in any way they could.

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, when I first got diagnosed. I had a "friend" tell me her mom is a nurse and Chiari Malformation does not exist and I am faking my illness. I think having an invisible illness makes explaining your illness a little more difficult

How has your invisible illness affected your relationships? *

people do not like sick people. it is always an inconvenience to them. If it does not benefit them they do not care. My friends and family still continue to be a support, so my relationships have not truly been affected. Only when they ask to hang out or go out somewhere and I cant due to 10/10 pain

Is there anything you are afraid to tell people in your life? *

no, not really. I am always open to family and friends. I am trying to spread awareness about this, my family and I went through months of different remedies.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

yes, some professionals will not give you the time of the day. They do not listen to your exact symptoms and how you have been feeling which affects how quickly you can be treated.

What is your best coping mechanism? *

Coaching the sport I love, since I no longer can play this game. I cope with being able to coach and teach my players on how to excel in this sport and get them to the collegiate level. I also volunteer my time to coach a baseball event for kids with mental disorders. I like writing things down, from my feelings, to daily activities. it is very therapeutic and also I do not have to stress to remember everything. Since I struggle with brain fog and memory loss. I also love the gym but since my symptoms have been horrible, I have been limited to my gym activities.

What are you the most concerned about and the most hopeful for in the future? *

I am hoping to get relief from these debilitating symptom and provide life changing medical logs to everyone battling a illness like I am.

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.

Spreading awareness about Chiari Malformation and how this illness has changed my life & my families. My mom being diagnosed with breast cancer when I was 16, how I had to mature faster than my friends. Using softball as my escape. My black out causing us to figure out I had Chiari, I could of blacked out while driving.

What is the hardest and/or best lesson your condition has taught you?

" it's not what happens to you, but how you react to it that matters" I love this quote. I have taken my personal illness and designed a management tool for people with chronic illnesses.

What is the best purchase under $100 that helped your life

A stem machine, for my back and my neck. Also my medical log, it had been a game changer for me during my illness.

May We Add You To Our Newsletter? *

yes

Any questions you think we should add to this list?

I am trying to spread awareness about chiari, the treatments, money spent, time wasted.

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FEAR AND CHRONIC ILLNESS HALLOWEEN EDITION MONICA MICHELLE AND KYROS STARR TALK ALL ABOUT THE THINGS THAT SCARE THEM. Monica Michelle has been having a tough time with Ehlers Danlos Syndrome and a new diagnosis of MCAS and Kyros is have joint problems and some new troubling symptoms. Disability has never been so spooky.

In all seriousness warning if you have problems hearing about depression and things that go along with depression.

Panel Discussion: FEAR

1. Life before Invisible Illness
2. Things you fear
3. Losing your job - because you worry about paying your bills
4. Growing old
5. Getting in a car accident
6. 
   
7. The First Fears - Something’s Wrong: Invisible Illness arrives
8. Things you fear
9. Losing your job - because you’ll lose your health insurance
10. Changing jobs - will my new insurance consider my illness a pre-existing condition?
11. What’s wrong with me? - pain or problem intermittent or minor so you’re unsure what’s wrong.
12. The internet is a HORRIBLE place to look for what’s wrong with you. Self-diagnosis can lead you down many frightening paths!!
13. Losing friends because you can’t participate in social events
14. What if I never get better?
15. Loss of self-control
16. Dependency
17. Worry about worst-case scenarios
18. Doing things that could lead to more pain (going out with friends, etc)
19. Missing out - all the things you want to do, but can’t anymore
20. Doctors Don’t Have Any Answers
21. Things you fear
22. More fruitless tests
23. Spending more money for said fruitless tests with no guarantee that you’ll actually learn anything
24. Losing your home because of mounting medical bills
25. Uncertainty
26. Am I the only one?
27. Afraid the doctor won’t believe me or will dismiss my illness
28. Will this medication work / Will it continue to work
29. 
    
30. Research, Research, Research
31. Things you fear
32. Desperation leads you to researching on the internet. You’ll convince yourself that you are dying in 10 different ways before lunch!
33. Join chat rooms, facebook groups, reddit forums all so you can talk to people in the hopes of finding out something that can lead you to a diagnosis
34. 
    
35. I Have A Diagnosis! Finally I know what’s wrong, now what?
36. Things you fear
37. What does this look like going forward?
38. What are my new limitations?
39. Is there a cure or just “bandaids”?
40. Can I get something for this pain? - “The opioid epidemic”
41. What are the side effects of the medicine I now have to take?
42. 
    
43. What Do You Mean I Have Something Else Now? - Most people with an invisible illness have multiple problems, not just the one.
44. Things you fear
45. What is this new thing?
46. Do I tell my doctor?
47. Having to go through the whole process of figuring out what’s wrong with me now.
48. Is this too much for one person to bear? Thoughts of suicide.
49. Losing relationships because they can’t bear the ever increasing hardship of taking care of you
50. Loneliness and isolation
51. Fear of death

Article Links

1. https://themighty.com/2017/09/chronic-illness-and-fear/
2. https://themighty.com/2017/07/chronic-illness-fears/
3. https://themighty.com/2017/05/emotional-side-effects-sick/
4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070773/
5. https://brainlessblogger.net/2017/12/10/6-fears-we-can-have-with-chronic-illness/
6. http://www.alpineguild.com/COPING%20WITH%20CHRONIC%20ILLNESS.html
7. https://themighty.com/2016/06/honest-facebook-statuses-about-chronic-illness/ *******
8. https://themighty.com/2016/12/always-worrying-about-new-diagnoses-chronic-illness/
9. http://chronicallychloe.com/dear-diary-chronic-illness-and-fear/
10. https://mcreyscope.com/2014/09/12/the-stages-of-chronic-illness/ - The graphic in this article is especially good
11. https://www.psychologytoday.com/us/blog/turning-straw-gold/201301/5-tough-choices-you-face-when-chronically-ill-or-in-pain
12. https://welldoing.org/article/emotional-psychological-fallout-chronic-illness
13. https://www.psychologytoday.com/us/blog/turning-straw-gold/201601/day-in-the-life-chronic-illness
14. 
    

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An interview with Niko, founder of the chronic illness community and dating app Lemonayde, about dating with chronic illness and his own chronic skin issue Tinea Versicolor.

Name *

Niko Geoffroy

What is your disorder? *

Tinea Versicolor

At what age did your disorder become a daily issue? *

15

Who were you before your illness became debilitating? *

Before my condition, I was already pretty introverted and my skin condition really added to that and made it harder to get out of it.

What would you do if you were not dealing with your invisible illness? *

Since my illness is a skin condition, it is visible. I think all of my adversities are what pushes me to be as ambitious as I am. If not for my condition, I certainly would not have started Lemonayde.

What would you like people to know about your daily life? *

My daily life, especially when it includes any activity that forces me to take my shirt off, is full of a lot of explaining. Our culture is pretty hostile towards skin conditions, in general. The first question they need to know is, "Is it contagious?". Also, the assumption is usually that skin conditions are a result of poor hygiene, which, of course, is just not so. I take these moments to educate.

What would make living and moving in the world easier for you? *

More communities where people feel comfortable to be vulnerable in regards to their health without the expectation of judgement. There's a sense of relief and liberation that comes with being around people who you don't have to explain your health to.

Do you have any life hacks? *

More like mantras: 1) Your disadvantages are actually advantages. Find a way to use them as such. 2) The only two opinions I care about are that of parents. Everything else is noise. 3) Set your priorities and stick to them. Your health should be #1.

What kind of support do you get from family or friends? *

I love my family, they;re incredibly supportive, in that they don't treat any differently. And I pick my friends wisely. They don't see me any differently either. My family and friends know that I'm very independent and if I don't ask for help, it's because I DON'T want it. But if I do ask, I probably really need it.

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? *

I've had moments when people were convinced that my skin condition was due to poor hygiene even though I explained it has nothing to with hygiene. But whatevs.

How has your invisible illness affected your relationships? *

Woo. My skin condition started to develop in High School, which we all know is the most unforgiving place known to man. And with the emergence of a skin condition, that I had convinced myself was unsightly, came the insecurities and self-doubt. I put up a whole lot of walls when it came to social and dating activities. For me, being intimate was pretty much off the table. I didn't want to have to find myself in the excruciating situation of having to explain my skin condition and having the whole world know about it. My first relationship started in college and it was with someone who also had a skin condition (psoriasis). This may sound weird now but I initially fought off this relationship only because I knew she also had a skin condition. I don’t know why, but I guess I just didn’t want to convince myself that I’m only supposed to date people who were “like me” (whatever that means). But I was also keeping myself away from something great. It was just a strange confusing paradox. Fortunately, I lost that fight and we started dating and it was a wonderful relationship. We bonded about things only we would be able to understand. We skipped the whole “worrying about my condition” phase and just went straight to the fun part. We dated for quite a while and eventually moved on, as with most relationships. I did explore other relationships after the first, but it was the first that gave me that initial boost of confidence; validation of my awesomeness; and the relief that all ISN’T lost after all.

Is there anything you are afraid to tell people in your life? *

Very little. I used to be afraid to talk about my skin condition, now I don't care at all. I also used to be afraid to tell people about my undocumented status, now I couldn't care less.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

The first time I saw a doctor about my condition, the first thing he recommended was Selsun Blue Medicated Formula. However, I told him that I've been using Selsun Blue for quite some time with no results and I asked him to prescribe something else. And this guy was just so unbelievably insistent. He told me I had to try it. But I didn't want to spend money on this doctor visit knowing that it would be a waste. And he did not let up. And it was extremely frustrating.

What is your best coping mechanism? *

Mashed potatoes and cookies. Also, I'm a self-healer. I like to do all of my healing and thinking on my own. So I meditate at least once a day.

What are you the most concerned about and the hopeful for in the future? *

This is on a grander scale but I do believe that our society is coming to the realization that empathy is the greatest healing power that's ever existed. My concern is that we will know that and consciously choose not to use it. However, my hope (and belief) is that we will. This can summed by the following lyric: You think the only people who are people Are the people who look and think like you But if you walk the footsteps of a stranger You'll learn things you never knew, you never knew.

What is your favorite swear word?

Clusterfuck

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'd like to mention Lemonayde and how and I why decided to created it. As well as the mission behind it. We don't have to get too deep into it.

What is the hardest and/or best lesson your condition has taught you?

My ability to accept outcomes I have no control over. It's also given me the single trait I believe is my superpower... Empathy.

What is the best purchase under $100 that helped your life

Coffee. The book "David and Goliath - Malcolm Gladwell". The book "Our Revolution - Bernie Sanders"

Any questions you think we should add to this list?

"What do you believe is your purpose?" OR "What is the source of your motivation? What's the fuel that keeps you going?"

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Looking for a more inclusive, accessible way to date while disabled or chronically ill? 💘 In this eye-opening podcast episode, we talk to Jacqueline and Alexa Child, the founders of Datability — a revolutionary dating app built by and for the disability community. They open up about dating with chronic illness, building tech for accessibility, and why representation in love matters.

This episode is perfect for anyone searching for disability-friendly dating apps, chronic illness support, or inspiration from disabled entrepreneurs.

💬 Tap to listen and save for later!

📌 Follow for more disability advocacy, inclusive tech, and real talk about relationships.

#DisabilityDating #Datability #InclusiveLove #ChronicIllnessAwareness #DisabledAndProud #AccessibleDating #DatingWithDisabilities #DisabledEntrepreneurs #RepresentationMatters #PodcastRecommendations #PinterestPodcast #LoveWithoutLimits

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Self-care is your buzzword of the day. Make sure you have your meds Make a playlist that makes you smile, no judging Jefferson Airplane We Built this City is on mine. ok judge, if it makes you feel better.

Jigsaw Puzzle (Is wear it calms my ADD brain) Click if you think for a minute I was going to leave Dr. Who out of this. Favorite Dr. Who quote? "You know that in 900 years in time and space I've never met anyone who wasn't important before." Seriously if you have never watched it almost counts as an antidepressant for me. Streaming on Amazon Prime.

 Walks or just sunlight. If stuck in bed pick the part of you that can move and do. 

Make something art, music, the worst poetry in existence. Just make something. This Neil Gaiman speech is well worth your 20 minutes.

If you are a Holiday sort of person decorate your nightstands or make a warm cinnamon drink.

Take a class

Duolingo

Skillshare

YouTube

Craftsy

CreativeLive

Pack meds.

Call ahead and make sure there is a quiet space just for you

Bring food you can eat if anyone gives you attitude you can always explain in great detail what will happen if you eat their food trust me you will never have to explain again.

Lower your standards. Say it with me 'I am not Martha Stewart. I am not Joanna Gaines.' These are lovely talented women who have help, so much help

The phrase 'No.' This magic word has so much power that usually toddlers wield it. It is your turn. Will people be disappointed? Only the asses. 

I am going to give you the magic phrase that separates the merely ignorant from the jerks 'I have blank I can spell it if you would like to look it up. Currently, I am only accepting advice from my health care professionals but thank you for your concern.' If they persist hide in that quiet room you asked for.

Remember You know your body and your mind take care of them in a way that suits you best, I'm closing with the advice of one of our listeners. 

— C{Andy} cane  🍭

So that's it. If you 'have more tips I will leave the comets open or tweet @invisiblenotbrk. Share this with family and friends Give the gift of kind comments on Itunes and until next week

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1. Jason David and child seizures medical marijuana
2. Charlottes Web CBD treatment for pediatric seizures
3. Sanjay Gupta
4. Oprah and Medical Marijuana
5. Sunset Magazine and Medical Marijuana in landscaping
6. National Geographic and Medical Marijuana
7. Medical Marijuana Refugees
8. Medical Marijuana and Cancer, Medical Marijuana and PTSD, Medical Marijuana and Chronic Pain, Medical Marijuana and Autoimmune Disorders, Medical Marijuana and Depression,
9. What does Peer Reviewed mean?
10. California Medical Marijuana Tax Code
11. Department of Health Medical Marijuana
12. The Sinister Reason Weed is Illegal A fun way to find out about the VERY racially motivated reason of why marijuana became illegal.
13. CBG CBD THC

Emily Joyce CW Analytical Laboratories VP business development 

Jessica  Peters Moxi

Monica Michelle Podcaster, Children's Book Writer and Illustrator, and EDS, POTS, MCA, Fibromyalgia, and chronic pain patient and medical marijuana user.

What does a lab do for medical marijuana?

Jessica Peters of Moxi CBD rich tinctures now out of business because of Santa Rosa fires. Keep an eye out for her next business venture. Came to medical marijuana for her endometriosis becoming non-symptomatic after her use of marijuana

Jessica has worked at Harborside Medical

If you want people lowering their opioid use don’t make medical marijuana costly or difficult to get and other tales of common sense

Taxation and not having the ability to use insurance means at least for Monica Michelle not being able to afford medication when taxes are more than the product

Pediatric medical marijuana with seizure disorders and the parents who become medical refugees to get their children medicine that WILL NOT kill them. 

CPS issues with medicating children with Medical Marijuana. By the way, information by the government on what is or is not allowed by the CPS was VERY hard to find.

A miracle cure? Might be if we could take it off schedule 1 to LEGALLY study all aspects of a plant that has NEVER caused an overdose death.

Unravel the medical mystery of THC CBD and the rest of the alphabet soup

You thought THC was just for fun….hang on and have a listen

So marijuana is legal right? Hang in and listen to what it means to be a schedule 1 substance (If you have listened to this far can we at least all agree that this is not a plant with ZERO medical benefits).

What happens when you run a business that is legal in certain states but is ILLEGAL in the United States hint no insurance, no write off and no business bank account. Just think what happened in the Santa Rosa fire to farmers at harvest time.

Who benefits when people can grow their own medicine? Any guesses?

Why are Pharmaceutical companies investing research into medical marijuana?

What happened when the people who need the medicine the most are on disability and do not have extra money to buy their medical marijuana but hey the prescription drugs are $5 to $10 with insurance.

What we can do to help people get their medicine. It will be grassroots and it will come down to all of us to create change

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Website: stephanietaitwrites.com

--> Her interview on The Today Show

What is your illness(es)?

-I had Lyme disease and other co-infections for 15 years before they got it correctly diagnosed. As a result I have permanent heart damage, permanent neurological damage (causing a variety of symptoms including an intermittent tremor, neuropathy, balance issues, aphasia, memory problems, chronic fatigue, anxiety, and more,) epilepsy, arthritis, and a variety of immune dysfunctions.

-I also have Complex Post Traumatic Stress Disorder (C-PTSD) stemming from childhood trauma but exacerbated by some additional trauma I experienced later in life.

How did your illness shape your career?

- I am an author and speaker. Earlier this year I released my first book, The View From Rock Bottom, in which I advocated for a deeper and more robust Christian theology of suffering, grief, and lament.

In essence, my career sprung directly out of my illness. I tried for many years to hold down a number of “traditional jobs” as people would think of them, but every time I ended up either let go or I had to quit - because my health would make it all but impossible to show up consistently and keep up with my work. Eventually my health got to the point where I spent a lot of time effectively bedridden, which was really difficult for a super extroverted personality like me. I started relying on social media as a tool to connect with the outside world and to seek relationship with others. I’m a natural over-sharer, so I would end up sharing a lot of details of what was happening with both my health and with the financial struggles that my healthcare costs (and inability to work) created. I never really set out to “grow a platform” as people call it, it just sort of happened organically out of my attempts to share my stories and connect with people while stuck in bed. Eventually I started a lifestyle blog, because that was one of the clearest avenues at the time for a woman with a social media following to try to monetize that platform and support themselves. But after a couple of years it became pretty apparent to me that I didn’t want to have to keep playing the blogger game, in terms of generating Pinterest worthy content to supplement the important writing. I started pitching more freelance articles to more serious outlets, and took a number of jobs as a public speaker. An attendee at one of those speaking jobs ended up being the connection that introduced me to a publisher, and ultimately led to my book deal.

- Ironically though, as much as my career sprang directly out of my illnesses, it is those same illnesses that have been the biggest catalyst to growth in that same career. My body already struggles with the small amount of travel I do right now, it make it hard to book a lot of better speaking jobs in other locations. My neurological problems can make it hard for me to write on many days, so my work schedule can be super unpredictable and I often find myself overwhelmed with how behind I feel. Because of my immune dysfunctions, I get sick constantly, especially in the winter, which provides additional challenges as well. I have so many big goals and ideas and ways I’d like to grow my career, but the two biggest challenges to that are my health, and the financial difficulties created by the enormous cost of my healthcare.

What makes your mission as an “influencer” unique?

- I’m an open book, with virtually no division between my public and private life, which makes me a pretty big anomaly not just in the world of internet personas, but more specifically in the Christian author/speaker world. For Christian women especially, there is a particular “type” of woman you generally see writing and speaking, and I’m pretty far from the stereotype in just about every way. I’m politically liberal, I share candidly about my struggles (whether that be my physical health, my mental health, our finances, or whatever they may be,) and I lack the polish and branding you would usually expect. I don’t have a clearly defined “niche” with my work, and have resisted any attempt to streamline myself into one specific label at the expense of other areas I want to speak into. I get into trouble a lot because I’m unwilling to edit myself or my stories to make audiences more comfortable or to make myself more appealing to the market. But I think that’s exactly what people respond to most in my work: so many of us are tired of the branded and inauthentic world of influencers and “thought leaders,” and we’re craving something different. Something shockingly real. Something we can relate to.

What’s your latest project/post/feature that you are most excited about?

My book just came out back at the beginning of August, and I’m really REALLY proud of the work I did there. That book was essentially 3 years worth of work, sweat, and tears (SO many tears,) and it’s been amazing to see the responses I’m getting from readers, and the conversations the book has inspired.

What are you most passionate about in regard to your work/helping people?

- I want people to learn how to show up completely for their lives RIGHT NOW TODAY, and not wait for “someday when.” Too much of our lives are wasted on the “someday when” lie. “Someday when” I get better, “someday when” I’m out of debt, “someday when” I have a spouse or kids or that career goal or I can buy a house or whatever the arbitrary line of “then I’ll have arrived” looks like for us - THEN I can allow myself to do all these things I want to do. THEN I can let myself have more than bare minimum survival. THEN I can be happy. Except “someday when” is a lie. Sometimes those goals will never happen for us. Sometimes they work out, but we are surprised to find a new “someday when” pop up in its place. And in the end, we lose years of our lives chasing the “someday when,” instead of allowing ourselves enjoyment today.

How do/did you handle flares while working?

-Poorly? (lol) But seriously though, I’m the worst. I have a downright predictable tendency to dramatically overdo it the *second* I have a little bit of energy, and then find myself paying for it for days or weeks afterwards. One of the things I’ve learned in trauma therapy is that for many of us with chronic illnesses and/or disability, we tend to disconnect ourselves from our body’s signals as a survival mechanism. In order to keep up with even the bare minimum demands of life, we often have to train ourselves to ignore our body’s signals of pain, fatigue, etc. The problem is that the more we disconnect from those signals, the more difficult it can be to register ANY of our body’s cues. The biggest component of trauma therapy for me has been learning tools for better embodiment, trying to connect my cognizant brain back to my physical body, so I can pursue a healthier sense of wholeness. I’m still learning, and there are years and years of unhealthy habits to unwind, so I would be lying if I said I have it all figured out now. But I’m trying to create more intentional routines of rest, and learn how to respect my body’s limitations without shame or guilt. I’m also trying to advocate for myself better with outlets I write articles for or places that ask me to come speak. That can look like asking for longer deadlines to build in more cushion, or requiring speaking gigs to pay for an additional overnight hotel stay either before or after the event so that I can space out the work from the travel to give my body a better chance of managing it all.

If you had one message to send out to every chronic illness warrior out there, what would it be?

- Find ways to show up intentionally for your right now life, and don’t lose yourself to “someday when.” Ask yourself, what would it look like to find happiness, purpose, fulfillment, and even joy in your life as a chronically ill/disabled person? Let yourself have more than just survival mode. You deserve happiness now, not “someday when” or even if you can get all the right ducks in a row.

Why do you think the patient-practitioner relationship is important?

- Because many MANY illnesses don’t have a simple test with an easy yes/no result to read, they require a practitioner to really listen to their patients to get a clear picture of what’s going on, and more important to believe us. Too many healthcare providers are dismissive of the symptoms their patient’s are describing (especially when those patients are women and/or people of color,) and are quick to assume it’s all in our heads if the tests can’t point to a simple answer.

What does “trust” mean to you in the patient-practitioner relationship?

Believe us. Reaffirm us. Validate us. LISTEN to us. And then treat us the way you would want to be treated in our shoes. Trust is earned by the way respect us, not simply by giving us the correct tests or treatments.

Links from the show:

• Twitter: @stephtaitwrites
• Facebook: www.facebook.com/stephanietait
• Instagram: @stephanietaitwrites
• stephanietaitwrites.com
• Her interview on The Today Show
• IGeneX: Lyme Disease Testing | Tick-Borne Disease Testing

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Monica Michelle is joined by author Emily Falcon.

Emily lives with ALCAPA.

In this episode, Monica and Emily discuss: 

• Growing up sick
• Post-surgery support
• Having a public body
• Self-motivation and adventuring

00:28 - Being a sick kid & Emily’s book title

07:28 - Mortality

10:16 - Portrayal of disability in media

12:21 - Post-surgery support

19:23 - Having a public body

23:43 - Self-motivation

29:46 - Emily’s tips for adventures

The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com

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https://georgiana3026.wixsite.com/mybeautifultr: website

https://twitter.com/mybeautifulTr

/https://www.facebook.com/mybeautifulTr/

https://www.facebook.com/groups/mybeautifultrauma/

What is your disorder? *

SLE Lupus, Fibromyalgia, Hepatitis B, Neurological Functional Disorder, Stroke

At what age did your disorder become a daily issue? *

12

Who were you before your illness became debilitating? *

Youth Worker

What would you do if you were not dealing with your invisible illness? *

An active member of the community Urban Vision, while being a Youth Worker

What would you like people to know about your daily life? *

My health is not reliable (i have good days but bad, I get sick easily and fatigue levels can come and go without warning)

What would make living and moving in the world easier for you? *

Being able to work from home (Which I started this year) Also not having illnesses

Do you have any life hacks? *

Stay Positive, even when it's hard too

What kind of support do you get from family or friends? *

Emotional, Love and travel

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? *

I've had strangers who want me to move so they can sit, (when I don't take my walking stick, which I only use when I'm tired and Lupus is flaring up).

How has your invisible illness affected your relationships? *

I can't commit to doing everything and anything

Is there anything you are afraid to tell people in your life? *

Nope, I try to be honest about my life as it's been filled up with challenges

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes, my careers hours has been dramatically decreased, and travel costs are no longer part of my career taking me to appointments and regular blood tests when I am sore and tired we have to walk.

What is your best coping mechanism? *

laughter and surrounding myself with loved ones

What are you the most concerned about and the hopeful for in the future? *

That I get seriously sick

What is your favorite swear word?

Fucking Hell

What is the hardest and/or best lesson your condition has taught you?

It's ok to put yourself first, so you can be there for others

What is the best purchase under $100 that helped your life

meds

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Her daughter is on the autism spectrum, ADHD, and childhood Clinical Depression. We talk about school's fiscal responsibility to children with special needs. Some of the struggles of parenting and disciplining a child with Aspergers and how to handle a first grader who has clinical depression.

Her son has NF needing constant wheelchair and g tube. We talk about some of the VERY difficult decisions parents with a genetic disorder have to make. Come to this discussion with kindness and gentleness. Each choice is DEEPLY personal. The definitions of a medical miracle and one of the most lovely stories I have ever heard.

How surgeons handle a fourteen-hour brain surgery and why Elana has twitches when she hears the theme to Orange is The New Black . 

We talk about self-care and the frustration of hearing DECREASE your stress. Drs. beware. The multidimensional theory of chronic illness and caretaking. Grab your bowtie and fez, ok I went Dr. Who and Neil Gaiman's Neverwhere but Elana is using Stranger Things. We are geeks We are fine with it.

NestingDivorce Style 

Spousal Support

Michelle Obama Go High

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What is your disorder? *

NF1, Mood Disorder, Essential Tremor (Me). ASD, Mood Disorder (DD), Epilepsy, Epilepsy, CP, CVI, CAPD, Medically Fragile, G Tube (DS)

At what age did your disorder become a daily issue? *

2

Who were you before your illness became debilitating? *

A regular mom before they were sick/special needs

What would you do if you were not dealing with your invisible illness? *

I have absolutely no idea. Unfathomable.

What would you like people to know about your daily life? *

That I am tired ALL the time. That it feels like too much, ALL the time. That you have to continue, even if there is no "light"...

What would make living and moving in the world easier for you? *

If society actually supported families like mine rather than empty promises. If people were not afraid of my kids (or wracked with "survivor guilt")

Do you have any life hacks? *

Not to be glib, but its all a life hack. Everything from parking when there is no wheelchair lift, to managing hospital discharge to getting kids with eating disorders fed. This is not what it was supposed to be.

What kind of support do you get from family or friends? *

This is really hard to answer. Sometimes I'm overwhelmed by the large and small outpourings of love. Sometimes I'm alone on an island and its like no one can see me.

Have you ever had someone not believe you have an invisible illness because of your appearance? *

Me less so because I'm very proud so I don't share much. My daughter, all the time.

Has this been a positive or negative experience? *

It's been a learning experience. As people get to know her better it's interesting to see how their perceptions change. It's also helpful that even in the last 5 years, they way people think about autism has changed.

Would you care to relate the details of what happened when someone didn't believe you were disabled?

It was very hard and remains hard to get my daughter the services she needs. There have been times when people come around and I want to scream I TOLD YOU So but that does me no good. I'm learning a lot about humility and patience.

How has your invisible illness affected your relationships? *

Most of the people I used to know are not in my life in a meaningful way. The ones that still are I appreciate even more. Being a caretaker gave me the strength to release my ex and I from a relationship that had died long ago. We work very hard on keeping things amicable.

Is there anything you are afraid to tell even the people closest to you? *

Not really. Almost nothing frightens me. If people cant take me for 100% who I am, they can go away. Life is too short for any of that.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

I'm not sure because we see mostly specialists who specialize in our particular diagnoses. I am glad that none of us of chronic pain. I've heard that's the worst.

What is your best coping mechanism? *

My stubborn personality. My work hard/play hard approach to life. Having few fucks to give about anything that is not important.

What are you the most fearful of and hopeful for in the future? *

I'm fearful that it's too late for the world in general. Well less fearful and more that is my conclusion. I think the human race is totally doomed. The US is crumbling and I have no hope really for the long term. Who are we to think that we are better than any other country and/or that our species is above extinction. We don't use our higher brain power for much good. For hopeful, it's the little things. I'm hopeful no one is hospitalized in the next 6 months. That would be awesome!

What is your favorite swear word?

Fuck or Douchebag

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.

So many. Id love to do an entire recording on the small non-profits that truly save lives. One goal I have is to help people target their philanthropy to more efficient, higher impact organizations.

What is the best purchase under $100 that helped your life

Netflix

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Summary

In this conversation, Maggie Bushway shares her experiences as a child with brain cancer and the impact it had on her life, family, and friendships. She discusses the importance of autonomy in medical decisions, the role of writing in processing emotions, and the challenges of managing chronic illness while pursuing her passion for writing. The conversation also touches on the dynamics of friendship during illness, the journey of writing a memoir, and the balance between social life and work amidst health challenges.

Takeaways

Maggie felt included in her medical decisions, which empowered her.

Autonomy is crucial for children facing health challenges.

Friendship can provide both support and normalcy during illness.

Writing serves as a powerful tool for emotional expression.

Reading her father's blog helped Maggie process her past.

Maggie's early writing experiences laid the foundation for her memoir.

Journaling can be a helpful starting point for aspiring writers.

Managing chronic illness requires careful scheduling and prioritization.

Finding humor in difficult situations can aid in coping.

Creative expression can take many forms, including fiction. 

Keywords

Maggie Bushway, childhood illness, memoir, writing, chronic illness, friendship, family dynamics, emotional processing, creative expression, support

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-Trans lifeline (a trans-run hotline for trans people that also works with microgrants to help trans people change their IDs) : (+18775658860 US/ +18773306366 CANADA/ https://www.translifeline.org/)

-A basic definition & concept breakdown: http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/

-An article about understanding genderqueer, a term like nonbinary https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/

-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment

-comingoutasnonbinary.tumblr.com

-blog about chronic illness:   chronicill on wordpress or chronc-ill.tumblr.com

-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)

-nonbinary 101/meeting a nonbinary person: https://valprehension.com/genderqueer-101/

-an answer to common questions: 

https://everydayfeminism.com/2015/08/trans-questions-201/

-a video to explain the term nonbinary to kids:

https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380

-a basic trans healthcare breakdown: https://www.healthline.com/health/transgender-friendly-healthcare-language#4

-also a fellow podcast! How To Be a Girl

-a website with a lot of articles directed at parents of kids coming out as LGBTQ: http://mykidisgay.com/category/gender/

-Chronically Fully Sick in Facebook

-post on They pronouns in grammar: https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/

-article about talking to a trans person etiquette:

https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/

-PDFs of a book about gender:

What is the best purchase under $100 that helped your life

CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)

-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)

-Electric Heating pad (I got this a long time ago but I believe it was $20-30)

What is your disorder? *

fibromyalgia, benign hypermobility, after effects of Lyme disease, depression, generalized anxiety

At what age did your disorder become a daily issue? *

8

Who were you before your illness became debilitating? *

Same person I am now? Maybe more confident in my ability to do multiple things in a day.

What would you do if you were not dealing with your invisible illness? *

Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.

What would you like people to know about your daily life? *

My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.

What would make living and moving in the world easier for you? *

Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.

Do you have any life hacks? *

Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.

What kind of support do you get from family or friends? *

I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.

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

How has your invisible illness affected your relationships? *

I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.

Is there anything you are afraid to tell people in your life? *

How much pain I’m actually in and how long it actually lasts

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.

What is your best coping mechanism? *

writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)

What are you the most concerned about and the hopeful for in the future? *

I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.

What is your favorite swear word?

Fuck

What is the hardest and/or best lesson your condition has taught you?

Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.

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In the last year for Invisible Not Broken:

• Eva joined as a co-host
• We reached 115 interviews!
• Over 115k Downloads, VA, OR, CO with the most! (say hi, guys!)
• Launched Patreon (PLEASE SUPPORT US <3 )

Our top episodes:

1. How to Navigate Life with Chronic Illness - Fibromyalgia Coach Tami and Eva of Wellacopia
2. Diagnosing fibromyalgia by physical exam and the power of the guaifenesin protocol - Dr. Congdon and Eva of Wellacopia
3. Financial Planning For Spoonies Interview with Emily Guy Birken

+

*Favorite of Monica’s Episodes: Seraiah: Being Trans and Having Chronic Illness: Ehlers Danlos

*Favorite of Eva’s episodes: The Need to Humanize Healthcare: Stephanie Tait (Part 2)

Coming up In 2020

• Traveling with wheelchair to London
• Monica’s children’s book (in 2 months!)
• “I Cant Believe that Happened” podcast Season 3 - children’s bite-sized history 
• Eva has a TED Talk coming up!
• Care Fair (self-care celebration event, late March in NYC)
• Ballet without fear!
• Wellacopia - Refocusing on matching with the ring leader of care

2020 Personal Favorites:

Favorite Books

• The Starless Sea - Eric Morgenstern
• Dare to Lead & pretty much everything Brene Brown 

Favorite Shows

• The Magicians 
• Dickinson 
• Fleabag (season 2) 
• Marvelous Mrs. Maisel 
• Sherlock 

Favorite Podcasts

• Tim Ferriss 
• The Minimalists 
• Tara Brach
• Myths and Legends
• LeVar Burton

👉 read and watch more content on https://invisiblenotbroken.com/

👉 match with your ideal practitioners on https://Wellacopia.com

SHARE 😍

RATE & REVIEW 👍

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Jodi Taub is a psychotherapist with a private practice in NYC. She is a specialist in chronic illness and is a chronic illness warrior herself. Her first episode on Invisible Not Broken was called “The Emotional side of chronic illness” (Jan, 2019).

In today’s episode we dive into Jodi’s personal and professional journey as a very high-risk patient with Primary Immunodeficiency.

We talk about coping – both internally and externally - during this acutely difficult time in history, and we cover a number of related thoughts like fear, gratitude, judgement, life-risk, behavior change, trauma, and more.

Emotions are running high, everyone. But we can get through and we can do so together (even when we cant physically be together).

Stay safe. Stay home. Stay well.

(Trigger warning: we talk about PSTD, loss, trauma, war, etc.)

@JODITAUBTHERAPY (ON FACEBOOK)

Eva’s personal coping tactics:

My coping: Being in control of what you can

·     ROUTINE (Stretching and “body-feels” Special coffee; Review “schedule”) for Wellacopia, podcast, chores, workouts

·     TAKING WALKS! Avoiding Cabin fever and being present (but safe) outside

·     Makeup and dressing - even if no one sees me! Makes me feel good.

·     Being in touch with the reality to an extent – read the news every day, talk to my friends about how they're feeling

·     Projects I have been putting off (organizing a photo album)

·     Meditation

·     Writing in my journal

·     Games with friends (via Zoom)

·     Staying fit (live and recorded online videos)

·     Cooking experimentation (made a vegan gluten free lasagna!)

·     Conscious time with my husband - #1 coping strategy. Very grateful for his support.

·     Watching “Friends” again. Always makes me happy!

·     PODCASTS! “Practicing human with Cory Muscara”, “Happier with Gretchen Rubin”,

·     Funny things: “coronials”, toilet paper memes, quarentinis

·     ZOOM PARTIES!

·     Gratitude journaling: toilet paper, comfy clothes, HEALTH HEALTH HEALTH despite being in more pain, parents

➡️ visit https://www.joditaubtherapy.com

@joditaubtherapy (on Facebook)

SHARE 😍

RATE & REVIEW 👍

➡️ Watch the video version of this interview

(Disclaimer: all content based on personal experience and research and should not be taken as medical advice)

👉PLEASE SUPPORT US ON PATREON <3

👉#Wellspo Weekly Newsletter! Sign up here or here

👉 Find your ideal integrative practitioners on Wellacopia.com

👉 Check out more episodes like this on Invisible Not Broken

👉 Read and watch more content (or submit your own) on the #Wellspo blog 

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Twitter @ashlee_hope98,

instagram @ashlee_hope

What is your disorder? *

Prior sudden cardiac arrest (cause unknown), scleroderma, hypothyroidism, migraines/cluster headaches, plus depression, anxiety, PTSD, and in diagnostic for ADHD

At what age did your disorder become a daily issue? *

18

Who were you before your illness became debilitating? *

An athlete, top-level student, very active and fit

What would you do if you were not dealing with your disorder and/or disability? *

Basic exercise, writing things by hand, probably still be an athlete

What would you like people to know about your daily life? *

I do not look disabled. People who see me would likely think I am just exaggerating when I say that I can’t take the stairs or I can’t go for a long walk. There are things people do every day that they take for granted that I can only do because of medical management.

What would make living and moving in the world easier for you? *

I am fortunate to be mobile and rarely need occupational aids, but I do require elevator accessibility and seating availability because medical management can’t do everything.

Do you have any life hacks? *

Cursive instead of print. It’s faster so I can write more down before my hands give out.

What kind of support do you get from family or friends? *

My best friend is the most supportive person I have ever met. I’m also part of a support group for SCA survivors, both locally and internationally. My parents are supportive in helping me manage my health but aren’t entirely convinced that I can adopt the label disabled.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

I haven’t had doctors outright not believe me, but I have had them push off some of my concerns as exaggerated or unnecessary. This happened with my electrophysiologist about my ability to get around campus, and with my rheumatologist about my back and knee pain.

How has your chronic illness affected your relationships? *

I haven’t had any romantic relationships since prior to becoming disabled but I have found myself becoming nervous about engaging with someone like that because I have a visible medical device under my skin, and my inability to engage in exercise makes me appear lazy and negligent of my health.

Is there anything you are afraid to tell people in your life? *

I really don’t talk about what happened to me with my parents at all. They are of the attitude that it happened and it’s over so I should let it go, but it still heavily impacts me.

What is your best coping mechanism? *

Therapy. I also have an ESA.

What are you the most concerned about and the most hopeful for in the future? *

My biggest concern is being able to get affordable insurance once I am no longer on my parents’ plan. I am most hopeful about the direction the general opinion on healthcare seems to be going and that these things will become easier, if not universal.

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 specifically want to talk about the lack of psychological care for survivors of near-death conditions like SCA.

Any favorite books or shows?

I love Brooklyn 99.

What is the hardest and/or best lesson your condition has taught you?

I cannot do the things I could do before. I used to be athletic and active and I simply cannot be that person anymore.

What is the best purchase under $100 that helped your life

Heated blanket.

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Family Leave Act

Accupuncture for Recovery

Criminal Mind, Russian Doll, and Umbrella Academy

Libby

Caraval, Flatout Love, and The Lie Tree

What is your disorder? *

Nutcracker Syndrome

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? *

• Don't be afraid or ashamed to ask for and accept help.
• Use assistive devices like walkers, canes, wheelchairs to conserve energy and
• bedside tables/trays for a place to keep all your stuff on those days you're stuck in bed.
• Join support groups, such as those on Facebook. Sit on a stool while cooking to conserve energy.
• Buy pre-cut veggies/fruit to make cooking quicker.

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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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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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:

• Our lives with COVID (getting prescriptions
• The shift to telemedicine - the new Zoom world
• Jessie’s MS journey
• Why she started her podcast
• The imbalance of costs (for patients and physicians)

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Monica Michelle is joined by disability activist and founder of Everywhere Accessible, Tinu Abayomi-Paul, creator of the popular hashtag #EverywhereAccessible. She is a survivor of Cancer and Chronic Pain, and she is a black woman.

*This episode was recorded back in 2020 but is still very topical today.

In this episode, Monica and Tinu discuss:

• Affirmative Action: The Guidelines address what appears to be a conflict between the statutory prohibition against considering race, sex, and national origin in making employment decisions, and the need, often through affirmative action, to eliminate discrimination and to correct the effects of prior discrimination.  
• First Nation Missing Girls & Laws / Father of Gynecology
• Advice
• Be clear, ask with an idea in mind
• How to use and share your privilege to leverage help
• How do we give people the rod
• Company Activism
• Color Blindness
• How to amplify inclusion riders
• What we can do to push the Black Voice forward: Create a day on the 13th to support Black artists, makers, and storytellers. On the 13th, companies should take the time to listen to their workers about what is needed within their companies.
• Use Your Local Library
• Getting Medical & Mental Help while Black
• How Tech Workers can help
• A Day for Black money to Black artists
• Disability Access and Political Activism

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:

• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Complex regional pain syndrome (CRPS)
• Postural orthostatic tachycardia syndrome (POTS)
• Vulvodynia
• Mast cell activation syndrome (MCAS)

*This episode was recorded back in 2020 but is very much still topical today.

In this episode, Sarah Ramey and Monica discuss:

• being denied painkillers
• non-traditional medicine and being forced to embody the female ‘warrior’ archetype
• the lack of empathy in the medical world
• navigating specific illnesses within a world of cancer and other leading illnesses
• breaking the gender norms, emotional intelligence, and more

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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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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*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:

• Mast Cell Activation Syndrome
• Interstitial Cystitis
• Vulvodynia
• Fibromyalgia

Sarah's links

• Sarah’s Book
• Sarah’s Website

In this episode, Monica and Sarah discuss:

• Combating the medical and wellness world
• Access to more information online via news, social media, etc
• Activism and Disability
• Tapping into creativity through writing and painting while disabled

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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