Podcasts about invisible not broken

Monica Michelle is interviewed by consultant and content creator Nick Clemmons. Nick recently started the blog Dory's Corner with Invisible Not Broken. A companion podcast hosted by Nick will be released soon.Nick lives with Sickle Cell Disease. Monica lives with Ehlers-Danlos Syndrome, POTS, MCAS, and Fibromyalgia.In this episode, Nick and Monica discuss:Monica's diagnostic history and her relationship with her disabilitiesHow Monica learned to advocate for herselfLack of media representation influencing abled people's perspectives of disabled folksHow Monica's family functions around disabilityTIMESTAMPS00:42 - Monica's history and relationship with her disabilities13:06 - How Monica found her voice *Trigger Warning: Mention of SA* 31:40 - Media representation45:09 - Monica's familyThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

Yeah, yeah, we've talked about "Midnight Star" before. But that doesn't mean we can't talk about it again! I'm joined by "Weird Al" fan and friend of the show Noah to do JUST THAT.You want to talk about a song we've already talked about before? You can! Slide into our DMs or shoot an email to beerdalpodcast@gmail.com. Hooray!This ain't Noah's first podcast rodeo, either. Check out his appearance on Invisible Not Broken.Beer'd Al is an extraordinary member of the OddPods Media Network.Our promo this week is for from the from the from the from the From the Middle.This show is part of the Spreaker Prime Network, if you are interested in advertising on this podcast, contact us at https://www.spreaker.com/show/5439475/advertisement

Episode 49: Eva Minkoff might be the only person I know that has equal perspectives from the patient side, provider side, organizational side, and research side of things. Her ability to see all sides of the healthcare equation is one of her greatest strengths. I naturally had to have her join the show to talk about one of the most important discussions out there in the world today. Enjoy :) For more on Eva Minkoff, check out http://patientproviderconnection.com and her amazing Ted Talk: Five Minutes to Fix Our Broken Healthcare System. She also is a podcast host for the show, Invisible Not Broken.Find us on Instagram and our website!

Note: This is my opinion only. I have Ehlers-Danlos, POTS, MCAD, and Fibromyalgia.If you just want a quick answer: Subaru Outback 2023Hi everyone!Welcome to the new series: Disabled Tech ReviewsThe list of “special” and “luxury” items are not so for those of us in chronic pain. I have a budget that for my personal sit-in gets laughed out of existence.The general list used to be:SafetyMPGEnough space for kidsA CD playerAh, the simple life that at the time I thought was untenable. Now with Ehlers dances so advanced I must at the very least have my power wheelchair available I have found sedans are just crossed off the list. They might have the ability with a master's thesis in Jenga to be able to fit the wheelchair but even if this was possible my cane will not fit as well in case I have a wild flight of optimism that I might be able to walk. Those of you in the know please feel free to roll your eyes or laugh the knowing laugh of those of us who will absolutely have the cause of death written optimism she knew better but thought she could anyway.Ok so even without the wheelchair I might have the body of a middle age woman but my ligaments are more that fossilized posits not you found at the bottom of a bag covered in debris. What I am saying is sedans are low to the ground. Getting in and out of them is my Everest.So sedans and sports cars are out. Minivans while intriguing do not have the space without a massive amount of engineering. Trucks! I LOVE trucks I have wanted one my entire life but the securing in the bed and walking around let's just say I was too worn out after a quick try to even think of driving. But the electric trucks have frunks! Ah yes, the frunk. I LOVE the lightning. The F150 is the car I dream of as I remember the boys in high school dreamed of having a Lamborghini, and for the cost, it is just as likely I will ever own one. If you can afford it please let me know how amazing it is as a wheelchair user. I promise no dark jealous thoughts will be cast your way only slightly simmering resentment.So an SUV it is. This should not have been limiting but let me give you my list if I am ever to consider driving:SafetySpace for wheelchair, child, canes, GIANT BEASTIE wolf, a small but active hamster disguised as a pug, and groceriesA door that opens wide enough I do not have to pivotBlind spot AI to help me stop if my leg seizes and lane departure warning. Basically, any safety feature that will save me if my body decides to just not (this is where luxury gets redefined. I have no issue paying extra for sunroofs, seat material, or sound systems. These are in fact LUXURY. Back in the day, Volvo invented a 3-point seat belt. It saves lives. They gave the plans away. For safety. The ability to survive should not be a luxury. This is my hill it has a pre-dug grave and a soap box I am not moving from it.)This started with plug-ins or PHEV there were 3 on the market I wanted none to exist in real life despite the company's best advertising efforts. Thank you all. We probably won't be on the cutting edge of any tech but we will do our best to review what we have to make our lives as autonomous as possible from kids care (fluff feather and human) to feeding yourself, to self-care apps, to VR, to the tech we use to run Invisible Not Broken. Please feel free to reach out.Head over to www.invisiblenotbroken.com for more podcasts and blogs about life while disabled.Remember to Be Kind. Be Gentle. And of course, be a Bad Ass. Hosted on Acast. See acast.com/privacy for more information.

Noah: Spina Bifida*Scifi Fantasy & Escape* Reading & Empathy* New House ADA* Airlines & Wheelchairs Noah and I chat about some of my favorite topics from airlines and wheelchairs* Dr Who and other sci fi shows and how they handle disability* Universal Design * School and disabled Access * Reading Fiction and Building EmpathyInvisible Not Broken is a chronic illness and disability podcast Invisible Not Broken with Monica MichellePlease share with friends and your community Subscribe to our newsletter and the podcastName*Noah MussayPronounshe/himWebsite and handles you want published*@NoahMussay (Twitter), @JulieWestEvents (Twitter I run for work)What is the name of your disorder, When did it present?Spina Bifida. It presented fairly early in my mom's pregnancy, so I was born with it. I also have Arnold Chiari Malformation, hydrocephalus, and scoliosis.What do you want people to know about your daily life?My daily life is relatively unextraordinary. I work. I play video games, I read, and I obsess over Big Brother and Doctor Who. My disability does affect my daily life, and I definitely worry about how I will deal with the struggles it presents when I'm on my own, but I genuinely like my life.What frightens you?I'm frightened by the fact that there are bigger hurdles that I have to face as a disabled person, and although I have a great support system, I sometims fear that I can't rely on myself for that support, and I don't have the benefit of hindsight to know that I can make it work on my own.What is your favorite purchase under $100Mobility aid: My grabber, which I use to grab things that fall or are too high. Less serious answer: Last summer, I purchased an audiobook, which is an in-depth analysis of Season 3 of Big Brother.Anything you want to cover or promote?I definitely think talking about my adoescence would be interesting. I was never an outgoing child, but I had friends in elementary school. Then, in fifth grade, I had a medical situation arise that made it, so I had to be pulled out of school for the rest of the year. When I got returned to school the following year, I felt different and closed off, and it became very hard for me to make friends, and I became a bit resentful that nobody seemed to want to be my friend. It made for a very isolating middle school through high school experience. See acast.com/privacy for privacy and opt-out information.

Invisible Not Broken is back with singer songwriter Laura Mustard!We talk art, writing, and music with chronic illness and disabilityCute Dogs Artists Supporting ArtistsDisability in the mediaWhy starving artist is a privilege issueRereading old journals the trauma and the content miningwww.lauramustard.com https://www.youtube.com/user/lauramustardmusic https://open.spotify.com/artist/0yoEf2gicVybjO38cQJfmL https://www.facebook.com/lauramustardmusic @lauramustardmusic https://www.instagram.com/lauramustard/ @lauramustard https://twitter.com/mustardlaura @mustardlaura DISORDER INFORMATIONWhat is your disorder?VATER Association and Latex AllergyAt what age did your disorder present?Birth, but latex allergy was diagnosed around age 7 and different catheters/stomas were added/changed over timeWhat was your life like before your disorder?It's always been present, but mobility was easier before the indwelling catheter was added this summer, it was also easier to eat before all the cross allergies were known with the latex allergy See acast.com/privacy for privacy and opt-out information.

Helping individuals with chronic illness can be very difficult because there are not always clear answers to their problems. That can be challenging, especially for doctors whose years of training have taught them to find problems and ultimately fix those problems. To overcome this, Eva stresses the importance of making a human connection with patients and validating their pain even if there may not be clear answers to their problems. Eva remarks in our conversation that the focus needs to be on not just the patient, but also the relationship. – Tim Hamilton, host of Planning on CallThis week is a little different - we're re-publishing Eva's guest interview on the Planning on Call podcast! Hosted by Tim Hamilton, CFP®, CIMA, CSLP, ‘Planning on Call' is a series of podcasts, blog posts, and other content focused on providing medical professionals, and their spouses, the important information they need to know as they plan their future. Other episodes of the Planning on Call podcast can be found here:https://atlaspwm.com/category/planning-on-callIn this episode of Planning on Call, Eva and Tim discuss the following: · Eva's build-block story that led to her chronic conditions and related career path· Her views on the disconnect between doctor-patient relationships· How to humanize healthcare You can listen to this episode on the original Planning on Call podcast here:https://atlaspwm.com/planning-on-call-blog-12-humanizing-healthcare-chronic-illnessApple PodcastsSpotifyLibsyn You can also find out more about Tim and financial planning resources for medical professionals here: https://atlaspwm.com/medical-professionals Eva's bio from the original Planning on Call show, written by Tim Hamilton: I had an amazing conversation with Eva Minkoff in my latest episode of Planning on Call. In this episode, I had the opportunity to learn about living with chronic illness and the support structures that can be built through humanizing healthcare. A Planning on Call listener connected me to Eva because they thought she had a unique perspective to discuss, and I could not agree more! Chronic illness and its treatment is a topic I knew very little about before speaking with Eva. I found our conversation very illuminating personally, so I hope it resonates with listeners as well. Eva has an impressive background which consists of but is not limited to being a serial entrepreneur in healthcare, Nutrition Scientist, and NASM Certified Personal Trainer. She also has spent a lot of time developing an impactful podcast, [Human]Care . This podcast features conversations with health entrepreneurs, care professionals from all walks of life, patient advocates, and industry change-makers all with the mission to humanize healthcare… and is part of a top-rated chronic illness podcast and network, Invisible Not Broken. Also, you can listen to her TEDx Talk, “5 Minutes to Fix Our Broken Healthcare System”, this talk boldly hypothesizes how elevating the patient-physician relationship through a proposed structured conversation can improve the healthcare systems. Eva has dealt with chronic illness in her own life, suffering from Fibromyalgia, Hypermobile Ehlers Danlos Syndrome, and Mast Cell Activation Syndrome (among other ailments). Navigating the difficulties of living with, diagnosing, and treating chronic illness for most of her life has given her the firsthand experience needed to help find solutions for other individuals living, struggling, and persevering with chronic illnesses.

Eva enjoys passionate story telling around relationship dynamics. She often compare doctor-patient relationships to romantic ones. People seem to love it. Eva has a TED Talk on it that will be published soon. Eva Minkoff's ten years of career experience in healthcare and lifetime of chronic patient experience has motivated her to pursue health system reform through championing effective patient-practitioner relationships. Eva is the co-founder of Invisible Not Broken, a podcast network for chronic illness, disability and other health topics. She is also the host of Humancare, a podcast and organization that supports her mission to improve global health through self-reflection and human connection. Eva holds degrees in Neuropsychology from Sarah Lawrence College and Nutrition Science from the Hebrew University of Jerusalem. Eva also has a breaking news alert about her Invisible not broken network on the show. Eva will have her website up soon at www.humancare.org

This episode is brought to you by Vital Fieldsvitalfield.com Use code SPOONIESUNITE  for 15% offWe are so happy to have Eva Minkoff on today's episode of The Real Life Show: Living with a Chronic Illness. Eva is a strong advocate and has her own chronic illness podcast. She was diagnosed with Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, and Fibromyalgia. Eva's ten years of career experience in healthcare and a lifetime of chronic patient experiences motivated her to pursue healthcare system reform by championing effective patient-practitioner relationships. She is the cofounder of the, "Invisible, Not Broken," podcast network about chronic illness, disability, and other health topics. Eva also hosts the podcast, "Human Care," That promotes improving global health through self reflection and human connection. Human care truly embodies Eva's personal brand and overall mission to support others. So enjoy this easy-going chat among friends as Eva opens our minds and offers a different perspective on healthcare; to see it as holistically human care.Eva's Instagram: https://www.instagram.com/life_of_eves/?hl=enHuman Care Podcast Instagram: https://www.instagram.com/humancare_podcast/?hl=enInvisible Not Broken website: https://invisiblenotbroken.com/Invisible Not Broken podcast: https://podcasts.apple.com/us/podcast/invisible-not-broken-chronic-illness-podcast-network/id1272292605Human Care podcast: https://podcasts.apple.com/us/podcast/humancare/id1525158391Social Media:https://www.instagram.com/therealspooniesunite/https://www.therealspooniesunite.com/https://www.facebook.com/groups/2443751542368935E-book: https://chelseadcoaching.com/the-ebook MyWellnessHub: https://mywellnesshub.coMerch: https://teespring.com/stores/the-real-spoonies-uniteWorkbook: https://amzn.to/2GqFIi2Email: hello@TheRealSpooniesUnite.comSupport the show (https://www.patreon.com/therealspooniesunite)

Jason is an engineering graduate who reinvented himself as a podcaster and chronic illness/disability advocate after developing fibromyalgia and postural orthostatic tachycardia syndrome (POTS). He is the host of Discomfort Zone, a podcast featuring immersive stories on chronic illness and disability that showcase our vulnerability, wellness, and resilience. He and his guests find comfort by turning towards discomfort, welcoming it, and laughing at it.  Jason is the youngest of three kids and the proud uncle of his nephew and niece. He was born and raised in Toronto, Canada where he currently lives with his Mom and Dad. On occasion, he helps with the dishes and does his own laundry. In his spare time, he can be found throwing grapes in the air, trying to catch them in his mouth, dropping them, dusting them off, and trying again.     s8e9 Fibromyalgia and POTs TRANSCRIPT Lita T  00:08  Hello, and welcome to another episode of podcast dx, the show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. I'm Lita, Ron is not with us today. Jean  00:20  And I'm Jean Marie. Lita T  00:21  Collectively, we're the hosts of podcast dx. And today's show, we're talking about Fibromyalgia, POTs and chronic fatigue syndrome with Jason Herterich. I hope I'm getting that right. He'll correct me in a minute (laughter) Jason is the host of a podcast called "The Discomfort Zone", and co host of the podcast, "Invisible, Not Broken". He's joining us today from one of our favorite cities, Toronto. Hello, Jason. Thanks for joining us today. Jason  00:35  You are Yeah, thank you so much for having me. I've been looking forward to this. Jean  00:56  Thanks. Yeah, actually, I just saw Margaret Atwood was posted. She was cleaning up trash outside of her, you know, on along the street in Toronto. And it looked a little bit chilly. Lita T  01:08  Yeah, it's it's chilly here too. Jason  01:11  It sure is. Jean  01:12  Well, Jason, before we get into your diagnosis, and that, I'm just curious what led you to hosting your own podcast. Jason  01:20  So it was really organic, how it happened, I had fallen really ill in 2016 and 2017. And one of my friends just suggested that I should get into listening to podcasts, I had become very, very ill. And I spent about 22 hours a day in bed. And I couldn't even handle looking at a TV screen, Jean  01:42   Mhhmm Jason  01:42   because I had such severe headaches. And so naturally, podcasts you don't have to look at, you can shut your eyes, you can just listen to them, you can tune out for a little bit. And I got really, really into storytelling podcasts especially. And they they were really wonderful in the way that they help expand. Essentially, they allow you to empathize with people at a much deeper level. And I really loved that aspect of it. But I realized that there weren't, there was a very low representation of people who are chronically ill, and disabled in storytelling podcasts. So I just sought to create my own. So I got into so I started in 2017, after I started to recover, and I started producing stories about my own chronic illness experience. And I tried to make them just very immersive stories using sound design  music and sound effects and everything to really try and engage as many people as possible. And so I've been doing that ever since. Jean  02:46  That's fantastic Lita T  02:47  Yeah, sounds great. Jean  02:48  And what are some of your favorite podcasts at the moment? Jason  02:51  Oh, yeah, I got a whole ton of I got a whole ton right here. Um, yeah, one of my favorite recently has been "Your Hustle". It is Have you guys heard of that before? Jean  03:01  I, I. ehh... it sounds familiar. Jason  03:04  Yeah, so it's a podcast that is produced within the walls of San Quentin penitentiary in California. And I don't know about you. But before whenever I think of inmates, they're often depicted as scary criminals who are devoid of any remorse. But really, when you get to hear their stories, you just get to understand them at a deeper level to empathize with them. And it really leaves you with this feeling that anyone is capable of rehabilitation. So that is one of them. Another one that have been hooked on lately "Unlocking Bryson's Brain". And it is a story of a Canadian man who takes listeners inside his family search for a diagnosis, treatment and cure to his son's rare brain disease. So yeah, it's it's really fascinating as like, this really incredible mix of storytelling, medical mystery, disability rights, and gene editing science. And then And then lastly, "How To Be A Girl" is a documentary of a mother raising her transgender daughter. So yeah, just just to keep this brief. At the age of three, her child told her that there was a mistake in her tummy that and that she should have come out as a girl. Lita T  04:23  Oh wow! Jason  04:24  So it just yeah, it navigates there. As the girl gets older, she starts going through school playdates. And when the mom has romantic relationships, so they just have very raw conversations. And I think the daughter is is my favorite part of it. It just really goes to show how incredibly wise children can be. Lita T  04:49  That's amazing. Jean  04:50  Yeah, those will be adding those three to our list. Lita T  04:52  Oh, for sure. Jean  04:54  Yeah. Lita T  04:54  I love that. Jason  04:55  Yeah I couldn't, I couldn't recommend them. highly enough. Lita T  04:58  Love it. Jason, how do you balance living with a chronic illness? Actually several chronic illnesses and hosting your own podcast? Jason  05:09  Yeah, it's it's an ongoing struggle. What has been most helpful for me is I try to make active decisions throughout the day. So I will leave alarms on my phone to just remind me to pause, whatever I'm doing consciously think about what I will do next and check in with my body see, like, do I need to take a break? Should I go out for a walk? Am I having trouble concentrating? Because usually, that's a sign that my symptoms are starting to kick in? Or, you know, do I have any obligations later in the day that I need to reserve spoons for? So really, it's an ongoing process? I try to get a little bit better at it over time. But yeah, I'm not perfect. (laughter) Lita T  05:58  Yeah, I can....  I can understand that, Jason  05:58  it's something that... I continue to struggle with. Lita T  06:00   yeah, I do the same thing with I use my phone a lot. I have early onset Alzheimer's. And I use my phone constantly to, to remind me to do things. And just to keep me in check and make sure that the day is going smoothly. And I don't end up with anything surprising that really kind of goes be into a tailspin, basically. Jason  06:25  Yeah, yeah. If you use too much early in the day, it can throw you off, Lita T  06:29  right. Jean  06:30   And we also use tech, we have watches that have a light diode that takes your pulse ox and pulse rate on a regular basis. And actually, it vibrates when you're starting when your stress levels are increasing. Or when you've been sedentary too long to kind of give you just that reminder, either to take a deep breath or go take a walk. Lita T  06:50  You Right, right. Jason  06:52  Wow, that's, that's actually incredible. I'm gonna have to get the name of that afterwards from you Lita T  06:56   It's one of the Garmin, I know it's a Garmin, but there are several Garmin, we got it. Yeah, we'll put a link on that for our website, Jean  07:04  or send you a message. Yep. Lita T  07:05  Yep. So Jason, I understand that you've been diagnosed with several different really complicated and difficult diagnosis. Fibromyalgia in itself is rough. myalgic encephalitis horrible. And POT's, could you tell us what symptoms lead you to seeking out medical care? Jason  07:27  Yeah, so this all started out just over nine years ago, it's wild to think it was so long ago, but I was a fourth year student at University studying engineering. And I was very, very active. At the time, I was a triathlete. And, you know, I was about to graduate and had my whole life ahead of me. And then one day during an intramural game of basketball, I caught a rebound, I twisted and pass the ball up court. And in that moment, I strained a muscle in my abdomen called, what is the name of it, intercostal, sorry, brain fog here. I strained my intercostal muscles, and they are muscles that are used for breathing. And so unlike if you break your arm, you can put it in a sling, and you let it recover, and it naturally gets better by itself. But with these muscles, it is really, really painful. And it is it's made even more complicated by the fact that you can't rest and recover from it, Lita T  08:30  Cause you need to breathe. Right Jason  08:32  Yeah, it's not easy to treat at all. And so essentially, I had to take a week off of school spent the entire time in bed. And when I went back to school, I was so far behind that, essentially what happened is I my stress levels were so high from having to work so hard. And my pain levels were already really high from the injury. And when you get pain and stress, the two just build on one another, you're more stressed out because you're in pain and you're in more pain, because you're stressed out. So it creates this positive feedback loop. And so over time, my brain just became sensitized to pain. And I as a result as well, I'm not getting any restorative sleep, so I'm just tired all the time. And so it was something I sought medical care for quite a while ago, but it wasn't until so. So the injury happened in 2011. I didn't receive a diagnosis until like 2014. And so yeah, there at that point, they were really really debilitating symptoms. Jean  09:40  I'm sorry to hear that. Lita T  09:40  And was that basically the Fibromyalgia that kicked in at that point? Jason  09:45  Yeah, it was fibromyalgia and myalgic encephalomyelitis as well. I don't think at that point. My POTs symptoms had begun showing themselves my POTs symptoms. I started to I believe, later on in 2015 is when I started I get dizzy and all that. And yeah, it's it's one of those things where I know a lot of these chronic conditions are interconnected. So you catch one, you're more likely to catch another, and, and so on. Jean  10:13  And so I think because of all the overlapping symptoms, it's hard to get a differential diagnosis. And establish that. Jason  10:21  Yeah, yeah. Makes it a lot harder Jean  10:24  and, and you said it took a while to get that diagnosis. What were some of the tests associated with that? And I hear you have a tilt table story for us? Jason  10:33  I do. Yeah. So I was just very dizzy all the time. And I would find that my heart raced whenever I stood up. And so one day when I was in my neurologists office, he did a quick check. So for your listeners, POTs is characterized by a heart rate increase of 30 beats per minute when you go from lying to standing up. So this was something that my neurologist did a quick check in his office, and I tested positive and this in that test in 2015. And so he referred me for a more comprehensive test called the tilt table test, where essentially, they tap they strap you to a table. And it's, it's slowly adjust from horizontal to vertical. And at that point, my symptoms were very severe when I got in, it was 2016. And just simply lying on the table put me in debilitating pain, even before the test began. I believe my heart rate was around 100 beats per minute, before it even started when Usually, it's around 60. And so they that we started the test, but it's supposed to be a 45 minute test. But 15 minutes in, I was just in such debilitating pain just from being uncomfortable on the board that they actually had to stop the entire test. And I just thought that it was going to be an inconclusive results. Lita T  12:01  Mhhmm Jason  12:01   But they ended up sending a report back to my doctor saying that I tested negative for it. Lita T  12:09  Oh? Jason  12:09  Which, to me is Jean  12:10  Not quite the same thing. Lita T  12:12   Yeah. Yeah. Jason  12:13  It didn't seem right. And I pleaded with the doctor, you know, I said, I explained to him how they had to stop the test early and how my symptoms had gone haywire before they even started the test. But my neurologist, kind of just discounted what I had said, and he accepted the results. And he completely ignored me. And I think I yeah, I believe anyways, it was only a few months ago, or earlier this year, when I just simply redid that very first test when you just simply go from lying to standing up. And I had the heart rate increase. And a new doctor that I've been seeing a cardiac specialist told me that I do in fact have POTs. So I guess the moral of that entire story was that I I guess, I guess the issue was like the rigidity of the medical system and not stressing the importance of the patient voice there, it was very clear to me that there was systematic error within the test that made the results completely meaningless. Jean  13:17  I'm sorry to hear that. I also had a tilt table test. And the technician that was performing my test to get me at a baseline for them to start actually was telling me very interesting stories and trying to keep my mind off the fact that we were there for because I think even going in for their test because it it can be a stressful process. And it is like a disconcerting kind of activity to be going through. A good technician is worth their weight in gold because they can try to keep your mind off the fact that you're there for that test and Lita T  13:57  and she was in pain because Jean  13:59   right Lita T  13:59   we had just flown out to California to Stanford for the test and on the landing or just Jean  14:06  some luggage hit me in the head. It wasn't a big deal Lita T  14:08  just prior to landing  the the flight attendant open the hatch on top, from where she was sitting and luggage fell out and hit her. And she had already had a neck and a head injury. So but she was tense. Let's say Jason  14:10  Ouch! Jean  14:23   But it's vital Lita T  14:24   she was tense. Jean  14:25  I think it just shows how important every individual in the medical system is Lita T  14:29   right Jean  14:30   And how much of an eff... you know how much they can Lita T  14:32  put you to ease Jean  14:33  Yeah, they can put you at ease and it takes someone who really cares about the person, you know, to accomplish that and I think we need more people out there that actually care about people and it does it makes a significant difference. Lita T  14:46  I'm hoping that all of the future medical people in the world are listening to this podcast Jean  14:50  we do have a lot of medical students listening Lita T  14:52  Yes, pay attention to your patient Jason  14:55  Yes that really is important. Yeah, paying attention to the to the To the individual not just simply seeing them as as a patient. And yeah, I think I believe I've heard the term white coat syndrome. Lita T  15:10  Uhhuuh Jason  15:10  My mom was telling me how she always used to test really high on blood pressure tests. Whenever she was in the in the, to see her doctor, and that was simply because just the fact that she was getting it tested would always just stress her out. Lita T  15:25  Right Jean  15:26  And it, Yeah. So if you have someone that puts you at ease that that can be very helpful, but inconclusive or incomplete test is not a you know, a completed testing. Lita T  15:35   No. Right. Jean  15:36  Sorry that you had to go through that. Lita T  15:37  Right. Well, I'm glad you finally got it, sorted out. Jean  15:40  Thank goodness, you know, you advocated for yourself, and were able to find a physician that would listen to you as well. Lita T  15:45  That's important. Well, I'm not sure if there are misconceptions about POTs. But what would what do you think the most common misconceptions about Fibromyalgia are? Jason  15:56  I would say that it's all in our heads. I have heard, I've heard that many times. I think that people who are not familiar with chronic illness, have a tendency to discount other people's suffering and their pain and their fatigue levels, simply because it's invisible. And and I think so many people have it in their heads that they just have it in their heads what somebody will look like who is suffering, they mistake what they're familiar with, as acute pain, where it's this very intense feeling. And people are gritting their teeth, with chronic pain, which is something that people have adapted to living with over years and years. And we still experience it all the time. But we're not necessarily showing it. We simply learned to internalize it, and try to focus on how we can best live with it. And then one other big misconception with fibromyalgia. I think a lot of people see it, and a lot of doctors actually think it only affects women. It is predominantly women, but men can develop Fibromyalgia as well. And I'm living proof of that. Lita T  17:12  Right right Jean  17:12  Yeah, we have interviewed other other men with fibromyalgia. And we were kind of shocked to hear that. That's the that's a popular misconception, Lita T  17:22  right Jean  17:23   Because I never imagined you know, that that would be something that would affect. Yeah, but okay. I have two questions for you. How are you currently being treated? And are your conditions? Is there a in the future? You know, do they anticipate that these are things that can be like, Is there a cure out there in the future? Jason  17:42  Yeah, so in terms of being treated, I know it's different for everybody. But what I have found most effective is simply a self treatment plan. So for me, I focus on eating a good diet, lots of vegetables and fruit. I getting the right medication for me that that took many years to find the right one for me, mind being amitriptyline. Everybody, things work differently for everybody. And then also incorporating some mindfulness where I just work, breathing, paying attention to my body sensations, tuning into my body throughout the day. And then, for me movement as well. That's been really huge. For a while I was doing Tai Chi, and I was even doing a waterbase tai chi, they had a program down at the hospital, I went to where we got to go through all the movements in this group atmosphere. And I found that really empowering as well. Just knowing that other you're in the pool with other people with chronic illness, and you're all going through the same thing together. So yeah, just overall that and having a good sleep hygiene, I turned off all my devices an hour or two before bed every single night and I try to just relax, I will even turn off all the lights in my on my floor and just have candlelight so that I can help relax my mind. Lita T  19:09  Well that's good Jason  19:10  So those are Yeah, those are the main treatment plans. And then in terms of fibromyalgia, Fibromyalgia being curable. I know that a small portion of patients do experience full remission. I don't personally focus on curing my illness, it would be really nice if it happened. But I remember my occupational therapist, one once told me not to make dead people goals and dead people can't feel any pain. So I can't if I can't fully control how my pain levels are I try to focus on what I can influence and work to be coming. I guess just work towards improving functionality. And then I've generally found that when my functionality does improve that my pain level usually follow suits as well. Jean  20:02  That's fantastic. Lita T  20:02  Yeah, that's good... Jean  20:03  that's very inspiring. Lita T  20:04  Right Right, for sure. Jason  20:05  Thank you. Lita T  20:07  Do you have any advice for someone that has been recently diagnosed with a chronic illness? Jason  20:12  Yeah, I think finding your social support system is really, really key. For anyone with a chronic illness, it can be very, very isolating. I think a lot of us who are chronically ill have friends drop out of our lives for whatever reason. It's not personal, it's not a reflection of you. And I've just found that it's best to focus on whoever has stayed. And just let them know regularly how much their support means to you and get involved with the online community I found that can be helpful as well. Lita T  20:48  Well, that's good advice. Jean  20:49  Yeah. And it sounds like you've established a really nice rapport with everyone in your podcast network as well. And you guys have a, you know, a great group there and produce some really quality podcasts. Jason  21:03  Yeah, that's been wonderful. Just connecting with so many people connecting with listeners hearing from them. Yeah. Jean  21:09  And what other role have your friends and family taken over the course of this journey? I know your parents have been very important to you, right? Jason  21:18  Yeah, they've been super Jean  21:19   it was a very leading question. Lita T  21:21   (laughter) Jason  21:21  Yeah, yeah. they've they've been huge. My parents. Now I fell very ill, as I mentioned earlier, around 2016. And around that time, I didn't have the ability to even take care of all my medical stuff, like getting prepared for appointments, keeping track of all that stuff, going to pick up all my medication, doing my research on all the different medications or the different tests that I was being sent for. So really, my mom ended up handling, essentially, all of that, in addition to being my full time caregivers for a couple of years, and I mean, even now, I've improved quite a bit. But even now, I have to rely on them quite a bit for meal preparation and other tasks, when I'm not able to handle them myself. And then, in terms of friends, oh, sorry, I should also just mention my I've got a lot of other family members who have been really great, especially my sister, Lisa, she's been amazing and always checked in on me whenever I was really feeling down. And then in terms of friends. I, yeah, I am incredibly blessed in that area too, in that when I was really sick. And there's a period of about eight months where I didn't, I only left bed very infrequently, and was very, very depressed, had thoughts of suicidal ideation, and all that. And there wasn't a span of time of more than two days, when I didn't get a visitor coming by, to just check in on me, and to come hang out with me. It's not the most exciting thing for my friends to come and do and, and sit by my bedside. And often I would barely even be able to contribute to the conversation, it would be them mostly doing most of the talking. So they were really my lifeline. And they were a huge reason why I was able to keep going and until I was able to receive the proper supports to allow me to recover. Lita T  23:31  That's excellent. Jean  23:32  Yeah that's, that's wonderful. I'm glad that you have those people in your life and that they've been so supportive. Jason, with the pandemic and everything that's been going on, you said you used to, you know, be able to go to the gym at the hospital. How have How have things change over the course of the past year? And what modifications Have you made to, you know, still stay active and do things? And, you know, in keep in contact with friends and family, when everything has been in lockdown? Jason  24:01  Yeah, it's been a lot harder. I've been doing zoom like a lot of other people for keeping in touch with people, for just keeping in touch with friends, but I do get zoom fatigue like everybody else, probably quicker than everybody else just due to having headaches and everything. Yeah, in terms of what else? I've been lots of phone calls. I've been doing social distance walks where I'll meet up with friends and we'll just all walk six feet away from each other Jean  24:33  (giggle) Okay Jason  24:33   six feet or more. Jean  24:34   Okay. Jason  24:35  And that's been a really good way to just keep in touch while also getting some exercise getting some fresh air. Yeah, not being able to go to the pool has been kind of tough. That's one of the things I really miss. That was a huge part of remaining social and, and all that and remaining active as well. And yeah, yeah, I've been fortunate I mean, I'm in Toronto here. For a good part of the pandemic, I have been able to have a small social circle. So I've had my brother, his wife and their kids within our social circle. And so yeah, being able to hang out with like a three year old and a two year old as they always make you feel young, and that is really improved my spirits. Jean  25:24  Yeah, there, children can be, and and pets and everything can be a great distraction. Lita T  25:28  Wait a minute, children and pets, you can't ball them up in the same thing. Jean  25:32  Well we do chicken therapy, where we go to see the chickens, Lita T  25:35 yeah we do, we do Jean  25:36  nothing makes you laugh harder than watching, you know, chickens fight over a tomato, because it kind of looks like you know, some sort of weird horror movie and yeah, okay. Lita T  25:45  (laughter) Jean  25:46  Okay, sorry, I'm, we're getting way off topic. Lita T  25:48  (laughter) Jean  25:50  Jason, what additional advice or tips do you have for our listeners. Jason  25:54  So, I would say, to just do your best job advocating for yourself. Or if you can't find a family member or friends who can, or friends who can, our medical system isn't... that the chronically ill often fall through the cracks of our medical system. So unfortunately, you do need to do some of that work yourself in terms of do your research before appointments, come prepared to every appointment with a summary of your recent medical history, and any questions you have for your doctors and any potential tests that you'd like to request. So you really have to become your own advocate there. And another thing is just find something that makes you happy, I know that our lives don't look the same way that they did prior to becoming ill. But it doesn't mean that I guess over time, we can develop the ability to adapt and find joy in different ways that we never could have imagined before becoming chronically ill. So yeah, find whatever, do whatever makes you happy. Lita T  27:08  That's great. Jean  27:09  Yeah wonderful advice Lita T  27:10  right. Have you always lived in Canada? Jason  27:14  I always have. Yeah, Jean  27:15  You can hear from his accent Jason  27:16  I live with my parents. Lita T  27:17  No, no, I  was just curious. Because, you know, like, now we're kind of comparing apples and oranges, you know, the medical system in the United States compared to the medical system in Canada. And I think that we have the same problems here. And it is very important to always go to your doctor's office prepared. And like you're saying, do your research ahead of time. Because you know, you go to a doctor's office nowadays, and you're given like a minute and a half, Jason  27:44  Yeah Lita T  27:44   you know, you don't have a lot of screen time with your doctor. Jason  27:47 Yes Lita T  27:47  So you have more you can do ahead of time, the better. Jason  27:51  Yeah, and I've noticed that doctors really appreciate it when you can give them like a 30 second briefing on everything that's happened with with your health, since they've last seen you it's a way for them to digest everything really quickly, and then be more efficient with your time. So I think that they really appreciate it as well. Lita T  28:11  Right. Right. That That could be a career field. Jean  28:14  Well, and I think Lita T  28:15   No, I mean, like just just in order to teach people how to go to the doctor, Jean  28:20  right? Well, maybe it could be included in your high school health class. Lita T  28:24  Right. Okay. (laughter) Jean  28:25  And I think nowadays, a lot of technology can also come into play where you can track your, you know, your headaches, and you can track your symptoms, and you can actually give your your physician or healthcare provider an actual, you know, a synopsis and a screenshot of what is actually happening with you on a day to day basis, because when it is a chronic illness, I think it's hard to quantify it. And I think Jason  28:34  Yeah, Jean  28:48  and things can help. Jason  28:50  I think that stuff is is so great, too. And I've noticed, I noticed that before I started doing any of this, like tracking my medical history, I would go into an appointment. And so often, it would depend what I would say to the doctor would depend on how my day was going. If I was feeling depressed that day, it would just seem like everything is so completely bleak. And I would send that message to the doctor, whereas like, they would get a much more accurate depiction of what my recent medical history was if I was able to Yeah, like as you were saying, go in with any kind of metrics or anything that you've been tracking over time. Lita T  29:26  Sure, sure. Well, Jason, how can our listeners learn more about you and your podcast? Jason  29:33  Well, they can listen to my podcast "Discomfort Zone" on whichever podcast app they use. They can also go to "Invisible Not Broken dot com" to find my podcast, as well as all the other shows in our network and you can find me on social media. My handle is D Zone Podcast. Lita T  29:52  Okay, excellent. Jean  29:53  And you guys have a wonderful website and a well rounded collection of podcasts. So we're very impressed. And we're hoping to one day grow up and be more like you.  (Eh Ha!) Maybe? (laughter) Well, at least Jason  30:06  You guys are great the way you are. Lita T  30:08  At least we're staying active. Jean  30:09  Yeah. Okay, Lita T  30:10   mentally. (laughter)  Well, Jason, thank you very much for taking the time to talk with us today. Jean  30:15  Thank you, Jason. Jason  30:17  Thank you so much for having me. Lita T  30:18  You're welcome. If our listeners have any questions or comments related to today's show, they can contact us at podcast dx@yahoo.com through our website, podcast, dx.com and Facebook, Twitter, Pinterest, or Instagram. Ron  30:32  Please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment, and before undertaking a new health care regime, and never disregard professional medical advice or delay in taking it because it's something you've heard on this podcast Jean  30:57  till next week.

Have you subscribed to Invisible Not Broken's Podcast Explicitly Sick with founder Monica Michelle? Head over to your favorite podcast site and hit subscribe to Explicitly Sick and share with friends and your online community. Max and I talked about our favorite topic: Creating With Chronic Illness The Vulnerability In Medicine Mischievousness And Explaining Disability Destroying World Views of Healthy People Humor and Disability Hemophilia on Tour Resentment and Rage Tattoos and Other Ways To Control The Body Song Writing and Storytelling Chronic Pain and Careers Covid and Music Touring

There are things you know you don't know, like rocket science, maybe. But there are also many things that you don't know that you don't know, like your unconscious habits or how your body will respond to a particular fibromyalgia treatment option you never knew existed. In this special replay, Eva Minkoff, host of the [Human]care podcast, interviews Tami to uncover the two lowest points in Tami's fibromyalgia journey, the thing that turned it all around for her, and how she guides her clients into "knowing what you don't know." Be warned! There is a lot of laughter and fun in this episode! In fact, Tami describes this interview as one of the most fun interviews she's ever done! Enjoy! For more information, free copies of Tami's books, and full show notes visit: FibromyalgiaPodcast.com/48. Note: This interview was originally shared in April 2019 on the Invisible Not Broken podcast. Eva has recently launched her own podcast, [Human]care, and includes a re-issue of this episode.

HOW TO COPE DURING COVID-19: THE JOURNEY OF A PSYCHOTHERAPIST WITH PRIMARY IMMUNODEFICIENCY“GIVE YOURSELF PERMISSION TO COPE HOWEVER YOU WANT TO COPE…NO JUDGMENT NECESSARY” – JODI TAUB 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, judgment, 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.)➡️ VISIT HTTPS://WWW.JODITAUBTHERAPY.COM@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, parentsPLEASE SHARE

Big News for Discomfort Zone - I'm joining Invisible Not Broken Podcast Network!PodcastsInvisible Not BrokenThe Humancare PodcastDiscomfort ZoneSocial MediaFollow Invisible Not Broken on Facebook, Instagram, and TwitterFollow Wellacopia on Facebook, Instagram, and TwitterFollow Discomfort Zone on Facebook, Instagram, and TwitterHello everyone, Jason here. I’ll be releasing 4 new episodes shortly. In the meantime, I want to fill you in on some big news. I am thrilled to let you know that Discomfort Zone is joining the Invisible Not Broken Podcast Network, a podcast network that speaks to people with chronic illness, invisible illness, disability, and chronic pain. It’s a perfect match for Discomfort Zone. The network includes Invisible Not Broken with host Monica Michelle and HumanCare Podcast with host Eva Minkoff.I was a guest on Monica’s show recently. She and Eva are two of my favourite people. If you like my show, I’m sure you’ll love theirs. I’ve posted links to their shows and social media in the description below.This change should be seamless for existing subscribers. If you listen off of my website, www.discomfort.fm, I’m transitioning over to www.invisiblenotbroken.com. Thank you for listening and keep an eye on your feed for new episodes.

Big News for Discomfort Zone - I'm joining Invisible Not Broken Podcast Network!PodcastsInvisible Not BrokenThe Humancare PodcastDiscomfort ZoneSocial MediaFollow Invisible Not Broken on Facebook, Instagram, and TwitterFollow Wellacopia on Facebook, Instagram, and TwitterFollow Discomfort Zone on Facebook, Instagram, and TwitterHello everyone, Jason here. I’ll be releasing 4 new episodes shortly. In the meantime, I want to fill you in on some big news. I am thrilled to let you know that Discomfort Zone is joining the Invisible Not Broken Podcast Network, a podcast network that speaks to people with chronic illness, invisible illness, disability, and chronic pain. It’s a perfect match for Discomfort Zone. The network includes Invisible Not Broken with host Monica Michelle and HumanCare Podcast with host Eva Minkoff.I was a guest on Monica’s show recently. She and Eva are two of my favourite people. If you like my show, I’m sure you’ll love theirs. I’ve posted links to their shows and social media in the description below.This change should be seamless for existing subscribers. If you listen off of my website, www.discomfort.fm, I’m transitioning over to www.invisiblenotbroken.com. Thank you for listening and keep an eye on your feed for new episodes.

Big News for Discomfort Zone - I'm joining Invisible Not Broken Podcast Network!PodcastsInvisible Not BrokenThe Humancare Podcast Discomfort ZoneSocial MediaFollow Invisible Not Broken on Facebook, Instagram, and TwitterFollow Wellacopia on Facebook, Instagram, and TwitterFollow Discomfort Zone on Facebook, Instagram, and TwitterHello everyone, Jason here. I’ll be releasing 4 new episodes shortly. In the meantime, I want to fill you in on some big news. I am thrilled to let you know that Discomfort Zone is joining the Invisible Not Broken Podcast Network, a podcast network that speaks to people with chronic illness, invisible illness, disability, and chronic pain. It’s a perfect match for Discomfort Zone. The network includes Invisible Not Broken with host Monica Michelle and HumanCare Podcast with host Eva Minkoff. I was a guest on Monica’s show recently. She and Eva are two of my favourite people. If you like my show, I’m sure you’ll love theirs. I’ve posted links to their shows and social media in the description below. This change should be seamless for existing subscribers. If you listen off of my website, www.discomfort.fm, I’m transitioning over to www.invisiblenotbroken.com. Thank you for listening and keep an eye on your feed for new episodes.

Website/Blog, Twitter, & Instagram Handle DZonePodcast, DZonePodcastName *Jason HerterichDisorder InfoWhat is your disorder? *Fibromyalgia, postural orthostatic tachycardia syndrome (POTS), and irritable bowel syndrome (IBS)At what age did your disorder become a daily issue? *22Who were you before your illness became debilitating? *An outgoing, energetic, adventurous, driven fourth-year engineering physics student and a varsity triathleteWhat 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 natureWhat 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 lifeEarbuds! I listen to podcasts for hours every day, I definitely got my money's worthiMovie, 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 See acast.com/privacy for privacy and opt-out information.

Part 1 Interview With Memoir writer Sarah Ramey about her book launch: The Lady's Handbook for Her Mysterious Illness. A discussion with Invisible Not Broken's Monica Michelle about chronic fatigue, POTS, a trip to the MAYO clinic, and a dash of Greek mythology Persephone.

JESSIE ACE - PART 3!In today’s part 3 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. In part 3 we discuss:Jessie Ace Roundtable Part 3 Zoom life and socializing (Zoom happy hours, game nights, Seders :p )Even more recommendations for things like TV shows, movies and games to enjoy during the quarantine Resources mentioned in the podcastResources mentioned in the podcastZoom - the video chat platform we usePodBeanAnchorAffiliate Marketing“Miracle Morning” by Hal Elrod Remote fun!HousepartyJack In the BoxLigretto MadlibsMarco Polo appDuoLingo (languages for neuroplasticity)ShowsThe UpsideMr BeanI Can’t Believe That Happened - podcastUnorthodoxWhat a Girl WantsMr Rogers movieVisit our invisible not broken facebook groupIn 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! PLEASE SHARE

JESSIE ACE - PART 2!In today’s part 2 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. In part 2 we discuss:Jessie Ace Roundtable Part 2 - Tips on launching a podcast and making the best out of what you haveHow she started PodcastingJessie’s MS journey and starting her podcast, DISabled to ENabledRunning a wedding business finding the need for disabled and sick brides72 episodes in 11 months!Blogging and illustrating for different MS charities and publicationsThinking about starting a podcast courseCreating a planner tracker journal for life + illnessMorning routines (like Hal Elrod’s)Resources mentioned in the podcastZoom - the video chat platform we usePodBeanAnchorAffiliate Marketing“Miracle Morning” by Hal Elrod Remote fun:HousepartyJack In the BoxLigretto MadlibsMarco Polo appDuoLingo (languages for neuroplasticity)Visit our invisible not broken facebook groupIn 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! PLEASE SHARE

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! Visit our invisible not broken facebook groupIn part 1 we discuss:Our lives with COVID (getting prescriptionsThe shift to telemedicine - the new Zoom worldJessie’s MS journeyWhy she started her podcastThe imbalance of costs (for patients and physicians)PLEASE SHARE

“Give yourself permission to cope however you want to cope…no judgment necessary” – Jodi Taub 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.)➡️ VISIT HTTPS://WWW.JODITAUBTHERAPY.COM@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

Seriously the hot take here is ask the person. What they say goes.When You Are Not Treated Like An Adult Because of Disabilities. A discussion with Monica Michelle (Ehlers Danlos wheelchair user for Invisible Not Broken a chronic illness podcast) and Amy Gaeta about how people with disabilities both mental and physical are treated like children from society to travel to the medical establishment. See acast.com/privacy for privacy and opt-out information.

In this episode, Tami talks about the subtle difference between focusing on your fibromyalgia and focusing on your healing. In your brain, you have a reticular activating system (RAS). Your RAS is the gatekeeper for information entering your brain and tells you what you should pay attention to. When you keep thinking of all the ways your fibromyalgia is impeding your life, all you see are more ways fibromyalgia is impeding your life. If you can make the mental shift to focus on ways you can heal, your RAS will start seeing more opportunities to feel better. Key Points Fibromyalgia is simply where we’re starting. It’s where we are right now, but that’s not what the focus is. The focus is on where we're going: healing. What we focus on is going to grow and be pulled into our lives.  There's a very big difference between thinking, “I can't because of my illness” and “I’m choosing not to so that I can feel my best tomorrow.” It's less about what you can't do and more about what you can do. It's about moving you on that journey towards feeling better Links & Resources Get free copies of Tami’s books here Visit FibroWorkshop.com to discover this month's free FibroWorkshop taught LIVE by Tami. The Monkey Business Illusion video How To Make Stress Your Friend, Kelly McGonigal, TEDGlobal 2013 Jenni Grover (ChronicBabe): How to be Resilient by Being Creative, Invisible Not Broken, Chronic Illness Podcast Network Other Episodes Mentioned Episode 2, Your Body Isn't The Enemy Episode 3, How Fibromyalgia Became My Friend Episode 9, The Fine Art of Self-Care Episode 13, How To Add More Joy To Your Life Episode 24, Practicing Gratitude with Fibromyalgia Episode 29, Fall In Love With Your Fibromyalgia Body with Janet Farnsworth Episode 31, Creative Resilience with ChronicBabe, Jenni Grover

Food shopping and meal preparation for spoonies with occupational therapist Kimberlea Lemon and the chronic illness and disability podcast Invisible Not Broken with podcaster Monica Michelle. How to feed yourself, some parenting with chronic illness tips, and an idea for the food box service Hello Fresh. Ehlers Danlos, Fibromyalgia, POTS, ME, and Chronic Fatigue. See acast.com/privacy for privacy and opt-out information.

This episode wraps up 2019! Can you believe it?!In the last year for Invisible Not Broken:Eva joined as a co-hostWe reached 115 interviews!Over 115k Downloads, VA, OR, CO with the most! (say hi, guys!)Launched Patreon (PLEASE SUPPORT US

Support Invisible Not Broken With Patreon! We are a self funded podcast and we could really use your help to keep Invisible Not Broken going and hopefully expanding.https://www.patreon.com/invisiblenotbrokenWebsite/Blog, Twitter, & Instagram Handlewww.bonetumorawareness.org, Twitter: @StephDinDC, FB: www.facebook.com/bonetumorawareness, IG: @stephmdaly & @bonetumorawarenessName *Stephanie DalyDisorder InfoWhat is your disorder? *Bone Tumor SurvivorAt what age did your disorder become a daily issue? *21Who were you before your illness became debilitating? *An active, young college student living in the city of Chicago that was happy, healthy ... alive, adventurousWhat 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 adventuresWhat 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 perseveredWhat would make living and moving in the world easier for you? *Losing my leg, not working ... having tons of time to restDo 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 healthcareWhat 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 supportHave 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 brutalHow 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 toughWhat 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 AwarenessWhat 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 lifeMy 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 See acast.com/privacy for privacy and opt-out information.

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 Handlehttps://www.jordanplotner.com/theresonanceprojectDisorder InfoWhat is your disorder? *Ehlers-Danlos SyndromeAt what age did your disorder become a daily issue? *14Who 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 lifeBlue Pilot Varsity Fountain Pen ($3.50) Shinola Large Hard Linen Journal ($24) See acast.com/privacy for privacy and opt-out information.

Eva Minkoff and Monica Michelle interview EACH OTHER on this very special 100th episode of the Invisible Not Broken podcast. Links/suggestions mentioned:Monica's other podcast - "I Can't Believe That Happened" PodcastLibby: https://meet.libbyapp.com/ - "Did you know your local library has thousands of ebooks and audiobooks? You can borrow them, instantly, for free, using just the device in your hand."Scrivener: https://apps.apple.com/us/app/scrivener/id972387337 - "Scrivener is the go-to app for writers of all kinds, used every day by best-selling novelists, screenwriters, non-fiction writers, students, academics, lawyers, journalists, translators and more."Movies/TV showsHouseHow I Met Your MotherFriendsSex and the CityDiagnosis (documentary) See acast.com/privacy for privacy and opt-out information.

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! See acast.com/privacy for privacy and opt-out information.

Interview With Wellness Podcast Host and SF Therapist Lauren Selfridge: Life and Creativity After Diagnosis. Lauren Selfridge run This Is Not What I Ordered which she began after her diagnosis with MS.I was a professional photographer until my diagnosis and unending flair of Ehlers Danlos, PTS, Fibromyalgia, and MCA.After my diagnosis I shuttered my business and began to write and illustrate children’s books. Once my hands could not handle daily drawing I started Invisible Not Broken.If you would like to see what Lauren and I are working on: See acast.com/privacy for privacy and opt-out information.

If you have not listened to Dawn's story please do for Flashback Friday. Listen this week, Dawn will be back next week to talk about her experiences being part of a medical study. Invisible Illness does not get much more invisible than Dawn. I can not remember when she first told me she was sick but I promise I was shocked, even with my invisible illness spidey sense. Please listen to the end to find out the best questions to ask a sick person and why "How are you doing?" should just be removed from the conversation. We also came up with the best idea for Airbnb if they want a how to rock at helping people idea. Thank you so much for listening to Invisible Not Broken. Please subscribe to the podcast to hear more interviews and of course leave an embarrassingly glowing review on iTunes.Until next week:Be Kind. Be Gentle. Be a Bad Ass.Learn MoreIf you like what you heard, join the partySign up with your email address to receive news and updates.Email AddressSign UpWe respect your privacy.Thank you!Dawn's Reccomendations for Spoonie SurvivalSpoon TheoryAmazon FreshAirbnbNetflixAmazon Prime VideoGirlfriends Guide to Divorce {Streaming on Netflix as of 7.17}Dr. Who {streaming on Amazon Prime as of 7.17}Questionairre Answears1) Who were you before your illness became debilitating?An "active" mom who went biking with her kids, a participant in our lives instead of an observer. An "athletic" woman...biking up Redwood Road, a gym rat.2) Is there anything you would do if you were not sick? Take my son and daughter mountain bike riding. Seek out trails farther away. Consider teaching full time.3) What should other people know about our daily life?I "bank" my energy, so if there is a busy day coming up...I plan on nothing before and after to gather up and replenish. I have a hard time committing night's out with friends as by 8pm I'm ready to go to bed.4)What would make living and moving in the world easier for you?More help with my kids for doctors appointments. More naps.5) Life hacks?Child labor! Taking my husband up on his offer to do more and telling him specifically what needs to get done. Considering ordering groceries from AmazonFresh.6) Support from family or friends?Yes and No..for the big trips across country yes! But for the every day, it's harder as we all don't live near one another.7) Do you find that people do not believe you are sick because of your appearance? How has this affected you positive or negative?I get more reactions from people when I'm having a tough day...when I'm feeling strong or having a good day...there's always a strange vibe like "you can do this?"8. How has this affected your relationships?The circle of friends has shrunk for sure. I just don't have the energy to be "out there" and putting energy out for that many people...I have to bank my energy for my kids and husband and myself. People don't reach out to me as I often end up saying "no" to going out or hanging out.9. What are you afraid to tell even the people closest to you?I am truly afraid of dementia. There are times that I have brain fog and can't come up with a word or forget a word or blank on something I committed to. That's part of being a parent and dealing with everything...but I can't chase that demon off. I watch my handwriting as that was what I first noticed with my mom.10. Does the fact that your disease is invisible change how healthcare professionals treat you?Yes, I had an Amyloid special tell me I should go running. I would love that if it weren't for the fear of stumbling and falling. Another specialist didn't believe me. See acast.com/privacy for privacy and opt-out information.

In this episode, I interview Monica Michelle, a children’s book writer, illustrator, and mother of two living with fibromyalgia and Ehlers-Danlos syndrome. A passionate artist, photographer, and author, Monica is truly a woman of many talents. She now hosts the Invisible Not Broken podcast, as well as I Can’t Believe That Happened -- a history podcast for kids and curious grownups.Monica has lived with chronic illness from a young age but she’s never let that dampen her humorous and creative spirit. Embracing the impermanence of life and using her failures as lessons, she’s mastered the art of picking up the pieces and moving on without losing her core role of storyteller. Monica discusses how her lifelong struggle with chronic illness and the realization that there are no guarantees have led her to fearlessly chase her dreams. She explores how her journey has given her remarkable resilience and an unshakable faith in herself. During our colorful conversation, Monica opens up on using humor as a survival mechanism, how she focuses on her true passions to find her core, and she offers creative parenting tips on how she’s raising her kids to be more empathetic.

Emily’s Website * Emily’s Podcast * Emily’s Twitter * Emily’s Instagram * Emily’s YouTube * Emily’s Pinterest * Emily’s SoundCloud *Emily’s Facebooksinger-songwriter & creative consultantbestselling author of Bare Naked Braveryfounder of The School of Bravery a learning lab for creative visionariesRecomendationsHolli MargelSchool of BraveryZapierTrelloFabulous IOS APPEmily 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? *24Who were you before your illness became debilitating? *More energeticWhat 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 lifeSoftware. Seriously. The right software can automate the most difficult things in life. See acast.com/privacy for privacy and opt-out information.

I am back talking with Eva from Wellacopia about how chronic illness shapes and factors into our life choices.Click here for Eva's interview about her life with fibromyalgiaMonica Michelle (me) has Ehlers Danlos, Fibromyalgia, Mast Cell Activation, and POTS.In this first episode, we talk about chronic illness and high school, factors to consider when you are a spoonie choosing a college, and a long chat about dating when you have an invisible illness.In the comments please tell us about how chronic illness has affected your life choices or any tips you have.Invisible Not Broken has a Patreon account. If you would like to and can support the podcast thank you! You can do so by clicking here. See acast.com/privacy for privacy and opt-out information.

I am back talking with Eva from Wellacopia about how chronic illness shapes and factors into our life choices.Click here for Eva's interview about her life with fibromyalgiaMonica Michelle (me) has Ehlers Danlos, Fibromyalgia, Mast Cell Activation, and POTS.In this first episode, we talk about chronic illness and high school, factors to consider when you are a spoonie choosing a college, and a long chat about dating when you have an invisible illness.In the comments please tell us about how chronic illness has affected your life choices or any tips you have.Invisible Not Broken has a Patreon account. If you would like to and can support the podcast thank you! You can do so by clicking here. See acast.com/privacy for privacy and opt-out information.

#30dayspooniechallenge. JOIN THE DARK (HUMOR) SIDE Sign up with your email address to receive news and updates. Email Address Sign Up We respect your privacy. Thank you! So this is stupid simple and all you need to do is just post a video or a picture of what your life is like with a chronic illness. Can be as long or short as you like. Just add a not or say where you are from.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 usingAdobe Spark Video APPIPhone 7 Plus (Getting desperate to switch to Google Pixl)Relentless and my children would say annoying optimism See acast.com/privacy for privacy and opt-out information.

From the best way to support a spoonie to great ways to manage anxiety to the true story of postpartum depression with and without medication this episode is absolutely full of great spoonie life hacks and some real information about bipolar, anxiety, and migraines from high school to college to being a new mom. Make sure to share this episode with anyone who has or anyone you would like to know more about postpartum depression, migraines, or bipolar. Thank you and until next week Be kind. Be gentle, and be a bad ass. Subscribe Sign up with your email address to receive news and updates. Email Address Sign Up We respect your privacy. Thank you! LinksDaith piercing for migraines Text Anxiety HelplineFollow Melissa On SOCIAL MEDIA:twitter.com/spoonie_mamainstagram.com/spoonie_mamafacebook.com/spooniemamablogMelissa Guida-Richard's Article & Blog Posts:Spoonie Mama BlogThe Mighty Articlehttps://spoonieauthorsnetwork.blog/2018/04/12/the-guilt-of-spoonie-parenting/https://howdoesitfeeltobeadopted.com/2018/04/06/how-does-it-feel-to-be-adopted-melissa-guida-richards/Buzz Feed ArticleBIO: What is your disorder? *bipolar disorder, postpartum depression, and post-traumatic stress disorder. MigrainesAt what age did your disorder become a daily issue? *15Who were you before your illness became debilitating? *An energetic teen that loved singing and acting.What would you do if you were not dealing with your invisible illness? *I once had dreams of being a Broadway star.What would you like people to know about your daily life? *Some days are harder than others but every day with my family is worth living for.What would make living and moving in the world easier for you? *Eliminate the stigma surrounding mental illness!Do you have any life hacks? *Just common sense ones. Always be prepared, order your medication, use a pill box, find your best coping mechanisms and stick to a routine.What kind of support do you get from family or friends? *My husband is my rock, and my sister in law is great too. Friends are helpful at times but only so much.Would you care to relate the details of what happened when someone didn't believe you were disabled?I went years without treatment.How has your invisible illness affected your relationships? *Yes. I have lost lots of friendships over time, and it can be difficult being part of a family where your every move effects someone else.Does the fact that your disease is invisible change how healthcare professionals treat you? *Sometimes doctors don't believe me.What is your best coping mechanism? *I love writing. It helps me to work through my emotions and put everything objectively.What are you the most concerned about and the hopeful for in the future? *I am most concerned that I might one day stop coping so well. I hope that better meds without side effects will be created.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.My two picture book manuscripts I'm attempting to get published: Mommy's Little Monkeys- mom with bipolar and Tia's Tiny Turtle-aunt with PTSD. I'm trying to create books that will help families discuss mental illness and that will helpfully reduce the stigma.What is the hardest and/or best lesson your condition has taught you?It's okay to fall apart and depend on someone else. I always hated asking for help.What is the best purchase under $100 that helped your lifePen and paper. Zoloft. Stress candles and bath bombs.Melissa Guida-Richards has a Bachelors of Arts in Psychology and Criminal Justice. Awards include The 2014 Rosa Parks scholarship and Michael A Garcia Award for her poem “Lo Siento, No Hablo Espanol” as a junior at Fredonia State University.She has been published on several blog sites including The Mighty, Spoonie Author’s Network, and Adoptees Stories Connect. Her blog, Spoonie-Mama.com is a safe place for mothers to read about honest experiences with motherhood, adoption, and chronic illness. It is a small community so far, but she has had people reach out to her for advice with their adopted children. She will also appear on the podcast, Invisible Not Broken, in an interview discussing her battle with bipolar disorder, postpartum depression, and post-traumatic stress disorder.Melissa is a stay at home mom, married to a stubborn redhead, and has two sons (2 years old and 9 months old.) Her family also includes two dogs, two cats, and two axolotls due to her husband’s avid love for animals. Chronic pain has been a big part of her life since the age of five-years-old but she has not let it stop her from being a frequent member of a mom group in Monroe County as well as an avid member of several online mom groups with over. When Melissa has some free time, she loves to write children’s picture books.She is currently in the process of seeking an agent for the following picture books:MOMMY’S LITTLE MONKEYS: Mommy has two mischievous monkeys, named Mania and Misery. Little CJ must work through his emotions and brave telling his parents how he really feels about his mother’s bipolar.TIA’S TINY TURTLE: Tia has a snapping turtle named Shelly. She doesn’t think she needs help...until her nephew, Mateo, almost gets bitten. Now, Mateo must convince his Tia to get help for her PTSD and see a special zookeeper who is also a therapist.THE GUARDIAN ANGEL: Sandra, feels like she doesn’t belong in her family-she is latina and her moms are white. She wants nothing more than to fit in with her family but keeps getting angry and breaking her toys. Can an unexpected visitor help guide her to her superpower and help her avoid timeout?THE ODYSSEY OF A MILLENNIAL MAMA: After discovering a deep dark family secret, the author realizes she wants to become a mother, but there is one minor problem she needs to face first- infertility. At fifteen-years-old, she was diagnosed with Polycystic Ovarian Syndrome and decided she never wanted any of her own children anyway-thanks to her dysfunctional immigrant family. Now... things were different, she knew in her heart that she needed that biological connection. Baby fever took hold and so she and her fiance decided to try now, while her chronic pain was somewhat under control. See acast.com/privacy for privacy and opt-out information.

Monica Michelle is a fellow podcaster, who co-hosts Invisible Not Broken.  As a child, Monica aspired to be a ballerina, but that got halted when she was a teenager due to her illness, or rather the debilitating illnesses she eventually was diagnosed with.  Getting frustrated with the lack of information about them, she's now on a mission to not only build a community of others with invisible disabilities, but also to help educate the public of the existence of these illnesses and shed some light on them. 

“Sucess is not final: failure is not fatal it is the courage to continue that counts” — Winston Churchill “I’m scared of how much my body will limit my vision for this.” — Monica Michelle Two women in business while also dealing with chronic illness have a VERY honest discussion about pitfalls, planning, and vision in business while being a spoonie.Invisible Not Broken began because I have seen what happens when everyone is too frightened to show their vulnerabilities. It leads to misunderstandings and a serious lack of empathy. I always knew this project would be hard and desperately uncomfortable. You only have to listen to our Gaslighting episode to hear our theory about being the wounded gazelle (nope lions move along I am doing just FINE). This episode was very much pink underbelly vulnerability time for both Eva and I. We both had never really talked openly before of all of the challenges of running a business while being chronically ill with fibromyalgia for Eva who runs Wellacopia and EDS and fibromyalgia for Monica.Show Notes Up and downsides when you are a spoonie and are your own boss.How to define success? Purpose? Busy? Likes? Subscribers?Why Monica Michelle had to shut down a successful photography business (hint Ehlers Danlos) and the turning point when Monica decided to come out of the spoon ie closet.Eva's inspiration for her tech startup Wellacopia which matches chronic illness patients with doctors.The importance of supportive people in your life. Goal setting and planning for your business while figuring in your chronic illness.Some tips and frustrations for finding balanceThe Secret Spoonie SocietyFind out how and why Invisible Not Broken began.How to plan for brain-body breakdowns as a spoonie business ownerThe painkiller effect of being "on"Work life and sickness balance, cue the hilarityThe myth of superwomanStop the 'killing it' mentalityFrustrations with a vision that goes beyond physical ability. (Hey interns would be great)Rock bottom what it looks like and the upside of everything going to hell.Life Hacks to surviving and setting goals "What you do is not who you are or your value."The questions to ask to find out your core. (Try Fight Club the movie NOT the book) Guess what? Monica's core is being a storyteller."Anything can be taken away except your imagination."Spoonie Book Club Readingmake your suggestions in the commentsDiving Bell and the ButterflyDr. WhoWhen Breath Becomes AirFight ClubSiddarthaShameless Plug Time For Kyros and For My Book Snuggle Bunny: A Bedtime Story By Monica Michelle Dreaming of Xeres: The Third War Book 1 (Volume 1) By Kyros Amphiptere, Orion T. Hunter See acast.com/privacy for privacy and opt-out information.

Please download images to share the podcast on social media.Show NotesWelcome to this week's chronic illness podcast episode of Invisible Not Broken. This week I am talking with Elana who has the chronic illness condition neurofibromatosis, bipolar and partial blindness. Along with her chronic illness, she is a caregiver to her young children who have their own disabilities. Elana is not only taking care of her own physical limitations she is also parenting children who have their own mental and physical challenges. She spends close to 40 hours a week coordinating care for her family.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 SupportMichelle Obama Go High If you enjoyed Join the party Sign up with your email address to receive news and updates. Email Address Sign Up We respect your privacy. Thank you! Questions & AnswersWhat 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? *2Who were you before your illness became debilitating? *A regular mom before they were sick/special needsWhat 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 DouchebagIs 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 lifeNetflix See acast.com/privacy for privacy and opt-out information.

This week on our chronic illness podcast, Invisible Not Broken, I interviewed a woman who has Crohn's Disease.Learn about what a diagnosis like Crohn's can be like in college, dating with a chronic illness, the Canadian healthcare system, parenting with Crohn's Disease, and the upside of chronic illness: the toxic friend cleanse. Did You Like What You Heard? Subscribe! Sign up with your email address to receive news and updates. First Name Last Name Email Address Sign Up We respect your privacy. Thank you! What is your disorder? *Crohn's DiseaseAt what age did your disorder become a daily issue? *21Who were you before your illness became debilitating? *Adventurous World TravellerWhat would you do if you were not dealing with your invisible illness? *Spontaneous TravelWhat would you like people to know about your daily life? *I'm never quite sure when I wake up how the day will be. And I'm afraid of food.What would make living and moving in the world easier for you? *Ingredients lists on everything!Do you have any life hacks? *Lots. Most involve being really honest with people who need to know, and yet being subtle and discrete around the grossness with those who don't. It takes an incredible amount of mental resiliency to live with a chronic illness and helping those around you understand what to expect and where things are. There needs to be an incredible amount of trust between us when an illness is invisible. My family needs to know that I won't use my illness to "opt out" of things I don't want to do and that if I need to go back to bed for the day it's aboutWhat kind of support do you get from family or friends? *My family is amazing. My friend circle is a lot smaller than it was before, but the people left are really great.Have you ever had someone not believe you have an invisible illness because of your appearance? *Yes, in overt and subtle ways.Has this been a positive or negative experience? *Having to justify the hard choices my illness forces on me to some judgemental asshole sucksWould you care to relate the details of what happened when someone didn't believe you were disabled?The subtle disbelieving is harder and more emotionally painful than the overt stuff. It's easy to dismiss the ranting guy, but the "friend" that decides you are flaky because you keep cancelling, or the times when someone pushes back on a simple request because "you always use this fake disability to get your way" are really toxic and difficult, especially when they are co-workers or familyHow has your invisible illness affected your relationships? *I am a lot more choosy about who I give my time and energy to. My relationships are significantly deeper and stronger than they were beforeIs there anything you are afraid to tell even the people closest to you? *Not reallyDoes the fact that your disease is invisible change how healthcare professionals treat you? *It can when I first arrive. I saw a huge shift in how seriously I was taken once I had a diagnosis they understoodWhat is your best coping mechanism? *LaughterWhat are you the most fearful of and hopeful for in the future? *Fistula (no one wants to poop in their vagina), My kids and work give me meaning and inspiration, there is hope in thatWhat is your favorite swear word?ScroatIs there anything you want to make sure we talk about during the interview? Like any organization you want to promote or something specific that you deal with.What is the hardest and/or best lesson your condition has taught you?How decoupled health and looks are and the really psychotic way society sees the female form See acast.com/privacy for privacy and opt-out information.

“It was all about me trying to project this image. To whom? No idea, myself I guess. Like anyone was looking.” — KatieDon't forget to share Invisible Not Broken with a friend or a caregiver you know.Until next week Be kind. Be gentle, Be a badass.Thank you for joining us for a very special interview with one of my favorite people. Katie has been a long time friend and my supplier in cute kittens. She is running multiple businesses while volunteering time to care for sick kittens and she is also caring for her brother who lives across the country. Please take a listen and learn about the upside of living in a small town, how Katie helped her brother gain some more independence, sometimes money needs to be thrown at an issue, how great telecommuting can be when you are a caregiver, and one of my favorite parts of our interview hearing how she found the blessings in the face of a massive oncoming storm. Katie is a true badass who has dedicated her entire being to caretaking take a minute and see her page Kitten 911.Katie's Caretaker QuestionnaireName * Katie CarneyAge * 50What is your person's diagnosis? *mental illness - Depression & OCDWhen did it become a significant issue in your life? *Always, more after parents diedWhat does a ‘normal’ day look like? *Work, lots of email & driving, think about issues revolving around caretaking brotherWhat could ‘healthy’ world do to make your life easier? *Employers could recognize mental illness - and the need to care for someone suffering with it - the same as needing to care for someone physically illHow has this changed you? *Made me 'grow up' and make sure my own shit is together!How has this affected your relationships? *It definitely pulls focus... but friends, bosses & boyfriends have been (luckily) greatAny life hacks?Preparation is key; NO guilt - order meals, pay for housecleaning, etc. for you AND/OR the caretake-ee!! You do NOT have to do it all, or all alone!!What do you wish someone would ask you? *Would you like a massage/foot rub/day off? How can I take care of YOU??What do you hope they won't ask? *What's his diagnosis? Has he always been like this? Will he ever get better?What frightens you? *Financial RuinWhat or who would you be if you weren't taking care of someone? *I can't imagine NOT caretaking ... but most likely I would travel a LOT more. Life would be less structured.Favorite swear word?Fuck ton (as in 'That's a fuck ton of work.'). Alternately - asshat. Best insult ever!Links to services mentioned in the podcastMom's MealsBlue ApronKitten 911Girl Power Now ProductionsCompassion FatigueKatie's Pet Sitting Business Ray of Sunshine Pet CareKitten 911 Future Pet Reality Show See acast.com/privacy for privacy and opt-out information.

Your Hosts Kyros Starr Monica Michelle Welcome to the first-panel discussion for Invisible Not Broken. My co-host Kyros and I are going to be talking about the most elusive and mythic beast in Invisible Illness world: getting the diagnosis.For many getting sick is a simple visit to a doctor. They figure out what is wrong and prescribe a treatment plan.When you have something rare and invisible (with added issues of such things as weight, socioeconomic status, female, or age) many times a doctor has never heard of your illness or had only heard about it in passing in medical school. There can be issues of not knowing how to properly administer tests (fibromyalgia test is pressure points and many doctors still think that Ehlers Danlos can only be diagnosed if someone has super stretchy skin). Kyros had to perform most of his own diagnostic tests at home for his food allergies.I hope you enjoy this episode. It was an emotional one to record as my diagnosis took over 20 costly years to obtain and I know Kyros went through many pitfalls to get to his.We will see you next week to talk to me. Yes, I realised I had been so excited about everyone's interviews I forgot to post mine! Tune in to hear me on the other side of the interviewing process talking about ligaments that are more used post-its than gorilla glue, the joy of dislocations from getting out of a chair, a heart that beats to its' own rhythms and whims, and the wide spread joy that is fibromyalgia.Please share us with a friend and don't forget to subscribe and leave very nice words for us on Itunes.Until next weekBe kind. Be gentle. Be a badass. Join the Party Sign up with your email address to receive news and updates. Email Address Sign Up We respect your privacy. Thank you! See acast.com/privacy for privacy and opt-out information.

Meet my new co-host Kyros. He was one of the first friends I made when we moved. He and his husbands are the most loving and kind men you could ever hope to call friends. If you ever see Kyros you would know why he would be someone you would think to ask for help moving furniture before you would think to offer him a seat. After talking with Kyros about his food allergy which I had no idea how seriously and how long it could affect him and about his trouble with walking I will be doing things differently when he comes over. I will NOT make dry meringues. Here is a shameless plug for Kyros and his co author Orion Hunter's book. I hope you enjoy your time with my friend. Until next week Be kind. Be gentle. Be a badass. Did you like what you just listened to? Thank you! If you enjoyed please help us here at Invisible Not Broken and share us with someone in your life. Sign up for the newletter for news and specials. Email Address Sign Up We respect your privacy. Thank you! Links From The PodcastMorton's neuromaArthritisDairy AllergySpoon TheoryElimination DietUberLyftTask RabbitKyros Invisible Illness Questionnaire Name: Kyros StarrAge: 48Disorder: Arthritis, Morton’s Neuroma, Dairy Allergy, Peripheral NeuropathyAge disorder became a daily issue: A: 45, MN: 33, DA: 40, PN: 47 Who were you before your illness became debilitating? I loved taking the dogs to the park, riding my bike everywhere. I worked 10 hours a day as a cable technician on my feet the whole time. Is there anything you would do if you were not sick? Ride my bike more, walk to the grocery store (It’s only 5 blocks away) What should other people know about our daily life? I’m in near-constant pain. A good day is about a 2/10, an average day is about 5/10. A bad day is 9/10. What would make living and moving in the world easier for you? Even sidewalks/pavement. Uneven ground makes my feet hurt more. Also, something other than concrete everywhere. Standing / walking on concrete is the worst. I can walk on grass / softer surfaces (even though they are uneven) for hours but I can only stand on concrete for about half an hour before I am in ever-increasing pain. Life hacks? Walk stools are your friend. You can wear it like a backpack then sling it off and have someplace to sit in a just two minutes. https://www.amazon.com/gp/product/B0015A8DVM/ Support from family or friends? My partners are great, but they don’t always understand why I say I can’t do something. “You did it just fine yesterday,” is a common phrase. They finally started understanding better when I explained the concept of “spoons” to them. https://en.wikipedia.org/wiki/Spoon_theory Do you find that people do not believe you are sick because of your appearance? All the time. Especially the Dairy Allergy part. I have people tell me all the time that “Oh, I’m lactose-intolerant too. But I go ahead and have ice cream whenever I want. I just deal with the consequences.” I’m usually like, “If I did that, I would be running to the bathroom with explosive diarrhea in about 30 minutes and would have exceedingly painful stomach cramps and gas for the next 3-4 days.”  How has this affected you positive or negative? It’s caused me no amount of trouble when I eat out. I have waiters/cooks who don’t take me seriously or treat it like I’m just making it up. I once ordered a hamburger and they brought me a cheeseburger. I told them I couldn’t eat it. The waiter initially argued that I got the cheese for free because they only charged me for a hamburger. I reiterated that I couldn’t eat it. The waiter took it back and came back a few minutes later with the same burger with the cheese scraped off. I told them that if I ate that, I would still get sick. The waiter and the cook were both pissed at me, even though I told them upfront that I had a dairy allergy. How has this affected your relationships? My previous relationship refused to believe that I had anything wrong. I should just “tough” it out because everyone has things that hurt.  Any questions to add to this list?Why do you think people don’t believe you when you say you have a disability?What is the single greatest challenge you face on a daily basis?How do you tell people that you have an invisible disability? Do you tell people?Animals in the wild try to hide their disabilities because they will be preyed upon by other animals. Do you think that, on some level, that is why people with invisible disabilities try to hide their problems even from loved ones? What are you afraid to tell even the people closest to you?That I usually burn through my daily allotment of spoons right before or during cooking dinner, but I feel I have to push through anyway because the family is depending on me to take care of things. The fact that I usually end up cleaning up dinner and doing other things around the house afterward means I am frequently beyond exhausted by the time I go to bed.  Does the fact that your disease is invisible change how healthcare professionals treat you?Definitely. I have had to do my own research into what’s wrong with me on more than one instance. It was only because I pushed that I got the test/treatment I needed. For example, I found out about and performed the elimination diet to find out what was making me sick (dairy), not my doctor. Best coping mechanism?I do the shopping. That way I can ensure that I read the labels and not accidentally get something that contains hidden dairy. As far as my feet and arthritis problems, I’m lucky enough that we can afford for me to get weekly massages that help with the pain. Favorite swear word? Fuck! Or Motherfucker. What are you the most fearful of and what are you the most hopeful for in the future?I’m fearful that my condition will continue to deteriorate to the point where I cannot walk at all without assistance. This would make life very difficult as my house has lots of stairs and I would not be able to take care of my family like I do now. I also would no longer feel like I was contributing to my family. I’m hopeful that, with advances in medicine, something can be done about my various problems so that I can go back to having an active life where I don’t have to think about ‘how far can I realistically go / walk’ or that I can go out to eat without having a near panic attack worrying that there will be hidden dairy in my food that will make the next several days hell. Support Kyros Dreaming of Xeres (The Third War Book 1) By Orion T. Hunter, Kyros Amphiptere Follow Us See acast.com/privacy for privacy and opt-out information.

Thank you so much for joining me in this weeks episode of Invisible Not Broken. Today I am going to be talking to Ms. O about her Fibromyalgia symptoms and some of her Fibromyalgia Treatment as well as her anxiety symptoms all while the wonderful girl is in college.I met Miss O and did a minor bit of pleading for her to come on the podcast. I think I just simply believe everyone should have a chance to meet her. It seemed a little unfair that just by chance I got to. Miss O at her early 20's has figured out so many things that I took the long road to. I hope you enjoy listening to her and getting to know her as much as I did.To learn more about FibromyalgiaTo learn more about AnxietyTo learn about KratomTo learn about Eric SwalwellTo learn about TaskRabbitThank you so much. Please share the podcast with a friend and leave an embarrassingly glowing review on iTunes! There was a tiny break in the audio because parent and child came running in I promise it's only a few seconds.subscribe to the podcast Join the Tribe Sign up with your email address to receive news and updates. Email Address Sign Up We respect your privacy. Thank you! See acast.com/privacy for privacy and opt-out information.