Explicitly Sick

New Episode:Sarah RameyThe Lady's Handbook for Her Mysterious Illness: A Memoir*Life of an Author*The Wellness Industry*Narrative In Chronic Illness*Creativity and Chronic Illness*Representation*Writing Tools

New Episode: Tinu & Monica Catch up Talking trust and travel Raising teens in quarantine How to support friend’s new businesses Live in care home day dreams Tinu solves world problems

* Patience in caregiving * Maria’s experiences with mental health, Lyme's, Hyper thyroid, and chronic intestinal parasites * How to maintain a chronically ills person’s autonomy * Handling stress as a caregiver * Keeping a relationship with joy * Boundaries * Art as Therapy * Managing expectations in a relationship and with those outside the relationship

Medical gaslightingWhat happens when your coping mechanism is removedReligion and Ableismbeing the good friend, daughter, daughter in law, wife.The exodus of family and friendsHow medical gaslighting keeps you from medical care and endangers lives (tiktok nurse)Job impact of chronic illness ADA needsSetting boundaries with family and friends when discussing illnessThe grieving process for chronic illnessThe importance of online advocacy ie keyboard warriorsThe cost of health and life goalsWebsite/Blog, Twitter, & Instagram HandleInstagram: @autoimmuneabbeyName *Autoimmune AbbeyDisorder InfoWhat is your disorder? *Chronic migraine, POTS, undifferentiated spondylitis, generalized anxiety, OCD, gluten intolerance, IBSAt what age did your disorder become a daily issue? *22Who were you before your illness became debilitating? *I was a long-distance runner who loved marathons and ultramarathons and felt completely invincible. Although I was always a bit of a sick kid and teen - I had episodic migraine, a dairy allergy that I eventually started to outgrow at around 12, and a long history of painful periods - I took my health for granted. I was only sick a handful of days each month, and I was ambitious, mentally healthy, and had lots of close friends.What would you do if you were not dealing with your disorder and/or disability? *I would certainly still be a long-distance runner, and I would also be doing triathlons. I would probably not have lost so many friends and would have a better relationship with my parents and in-laws. I experienced the typical quiet mass exodus of friends and family that many other disabled people also experience upon becoming ill. Thankfully my spouse and a few best friends stuck around.What would you like people to know about your daily life? *Chronic illness is isolating, exhausting, and often traumatic. It's really hard to stay mentally healthy when you're fighting daily symptoms but you constantly feel like you have to prove your symptoms to everyone around you. Being gaslighted on such a grand scale, especially by doctors, has a serious impact on a person's health.What would make living and moving in the world easier for you? *The biggest thing that would make the world more accessible to me would be less fluorescent lights. Chronic migraine and POTS make me sensitive to sensory overload, and fluorescent lights are impossible to deal with as a migrainuer. I have turned down jobs simply because of the lighting in the workspace. People think my intolerance for bright lights is just a preference, but it's definitely a non-negotiable accessibility need.Do you have any life hacks? *Write EVERYTHING down in your phone calendar to help compensate for brain fog. It's a game-changer.What kind of support do you get from family or friends? *My spouse and a few of my close friends have been amazing at supporting me through my illness. They are curious about my symptoms and experience with chronic illness, open to learning about ableism and medical gaslighting, and willing to make sure I don't go hungry at social events because of the gluten intolerance. Unfortunately, my family and my spouse's family have not been so supportive. For a while, I tried to be assertive with them about my needs and limitations, but at this point, I'm setting clear boundaries with them - I will not talk to them about my health anymore, beyond just sharing my diagnoses. And of course, like most chronically ill folks, I've lost a few friends since becoming ill.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? *YES. This is what I refer to as medical gaslighting. In my experience, the majority of doctors will begin to doubt my symptoms the moment they realize they don't know how to explain my symptoms or treat them. For example, when I asked my OBGYN about Endo, she did an ultrasound and found nothing. Now she blames my pelvic pain on the fact that "redheads have a lower tolerance for pain." My first neurologist told me my chronic migraine was all in my head. And several specialists have blamed all my symptoms on my anxiety disorder.How has your chronic illness affected your relationships? *It has strengthened my relationship with my spouse and a few close friends but has alienated me from most of my family and some friends.Is there anything you are afraid to tell people in your life? *I'm afraid to tell them that I'm still grieving the loss of my health and I badly need their support.What is your best coping mechanism? *My Instagram advocacy work has provided me with so much comfort, community, and a sense of purpose again. I can't imagine dealing with chronic illness without the Instagram community.What are you the most concerned about and the most hopeful for in the future? *I'm most concerned about and hopeful for my future career in therapy. I feel called to the field and I want to specifically work with disabled people and other marginalized groups, like the LGBTQ community and racial minorities. But I'm scared that the stress and exhaustion of grad school may harm my health and that I might fail to complete my degree.Is there anything you *don't* want to talk about? Is there a subject we should avoid during the 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.Medical gaslighting. It also may be interesting to talk about ableism in religion. I'm an ex-Christian who ultimately left the faith because I found it incompatible with my progressive values and because I got burned by religion and religious people when I became chronically ill.What makes you energized or enthusiastic? What drains you?Watching Netflix with my husband, training my puppy, doing disability advocacy work, and going for walks when I'm able to all energize me. Big social events and traveling with chronic illness all drain me.Any favorite books or shows?On Netflix: Sex Ed, Working Moms, Stranger Things, Glow; On Hulu: The Great; Books: Carry On by Rainbow Rowell, of course Harry PotterWhat is the hardest and/or best lesson your condition has taught you?That you never know how strong you are or how much pain you can tolerate with a smile until you become chronically ill.What is the best purchase under $100 that helped your lifeThe Headache Hat on Amazon is a lifesaver for migraines. I own three now, and I rotate through them on a regular basis. It's a wearable icepack.EPISODE TRANSCRIPT (please forgive the errors!)Monica: [00:00:26] Well, "Autoimmune Abbey",thank you so much forcoming on. And you've filled out this incredible form and I kind of thought I knew, like we're just going to talk about medical gaslighting, and we're definitely gonna talk about that, but you brought up so many really important things in your. Your form, like from like religion and abelism,Abbey: [00:00:46] which hitMonica: [00:00:48] the cross hairs.And, yeah. So where do you want to start? Do you want to start with medical gaslighting or do you want to start with, yeah, I have a list, so anytime I canAbbey: [00:00:58] evolve it to things to talk to you about. Yeah. Let's start with that. Cause I think that's definitely really important, but the. The ableism and religion is something I've been looking forward to talking about.And, haven't really talked about on Instagram very much yet, cause I'm not very open about that with a lot of friends and family yet, but it's the thing that's important and harmful. So yeah, we should definitely talk about that too.Monica: [00:01:24] And if at any time you feel uncomfortable with that line of questioning, just raise your hand and I will switch questioning, like no problem.but you also had brought up, boundaries and I totally want to talk to you about boundaries. So I guess we'll start with medical gaslighting. Kind of move through. do you want to give just like a quick account of what you have so people know who aren't familiar with you and if you're not familiar with auto immune Abby, I have been stalking auto-immune Abby on Instagram for a very long time.And then, please go to Instagram and follow autoimmune. Abby. I will refer to you as Abby from now on, but I want to make sure everyone had to get your handle.Abbey: [00:02:00] Yeah. So, I have chronic migraine, which was, the first illness that I developed, like back when I was 22, I've had episodic, migraine, my whole life, but the chronic part started very suddenly, and inexplicably.And so that was really disabling for a long time and really my first experience with the gaslighting. and then. Symptoms just kind of started to quickly snowball after that. So then I started having like a lot of the pots symptoms, which I know you also have, so you can relate to how, like, I don't know how odd all of those symptoms seem individually and how like doctors are just like, I don't know what this is, is probably anxiety.Like. Go see someone else. So, yeah, the pots is really the second thing. And then, undifferentiated spondylitis, which is, an autoimmune disease where your immune system attacks your ligaments, especially in large joints, like the knees and Achilles and back and neck and that sort of thing. So.So that was the, the third thing. and then of course, along with all of the physical stuff came the anxiety and, I mean, mental illness is pretty much in my opinion, like impossible to avoid when you're like disabled and you don't know how to explain your symptoms. So, so yeah, all that fun stuff came along with the physical symptoms.So. ByMonica: [00:03:30] the way, if I laugh and someone says that it's at a wrong point, I just need to explain she's the cutest cat on her lap right now. He keeps jumping up and batting and I swear I am notAbbey: [00:03:39] laughing at anythingMonica: [00:03:40] inappropriate. And if, if you're okay with me putting it up on Y

Social Handles, Blogs, Websites, and Hashtagswww.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 allergyWhat would you be doing and who would you be if you were not managing chronic illness/ disability?Good question. I think it could be easier to pursue a career as a musician and songwriter without needing amazing health insurance. I have friends who can afford to have less comprehensive health plans or just quit their "day job" to tour for 6 months (pre-COVID obviously). Or can move between jobs easier or have jobs with more flexibility to a degree. I've always felt that I needed that safety net. I am grateful to have a degree and a job with a steady income and insurance, obviously, but at times, it can feel limited with what I really want to do with my life in terms of music. Some of that speaks more to our healthcare system in the US rather than living with a chronic illness I guess. But it just always felt like there are certain rules I need to "play by" that not everyone else has to follow. There's also a big-time management piece in terms of everything I do to manage my birth defects. A bowel management routine and a big list of foods that make my stomach upset have been hard and limiting. In general, I have a pretty good system in place to manage it, but are still days that end up in the bathroom for hours, which can be frustrating. I usually check every ingredient before eating something, and I can still have an issue with a negative reaction.What would you like people to know about your daily life?Just all of the work that it takes behind the scenes to pull off the illusion of being "normal". Like I get up three hours before I have to leave the house in order to get ready. I have a bowel management plan, a catheter that needs flushing and cleaning and that's changed once per month. And before this catheter, I was prone to urinary retention, which leads to ER visits. I actually had three surgeries this past summer (in the middle of the pandemic) to put in this catheter and that impacted mobility and just overall comfort for a while (and still does to a degree, though it's improving). It's a bit of an "invisible illness" too in that most people wouldn't know about it if they met me on the street or interacted in the day to day. I always have a bag on me with extra supplies in case my stomach gets upset or I have issues with my catheter. I also have a giant water bottle on me cause I'm prone to dehydration and UTIs so I do my best to avoid that. It's a lot of calculations and planning for worst case scenarios I guess. I also see about 6 different doctors every year and have regular pills/perscriptions and ultrasounds and bone density scans to manage everything, and that's without any extra complications, like the catheter/urinary adventures this summer. And just the added expense that goes to healthcare, doctor's visits and all my regular orders to medical suppliers and CVS to manage everything. Again, it just takes a lot of planning and organization (which are not my strengths, lol) that people don't necessarily see or know about. And this is all going on while I work a full time job and try create a career as an independent artist and songwriter. And I do consider myself very lucky to be able to work and play music, cause I know not everyone with a chronic illness can. It's managing the frustration (and acknowledging that it's okay to be frustrated) while also having gratitude for what I can do, I guess.What would make moving through the world easier for you?More understanding and awareness about bowel/urinary disorders. Most people don't know about it and there is a bit of a taboo and negative stigma around any type of incontinence. It made me feel like I had to hide it growing up, which created a lot pf shame that I'm still working through. I only started talking about my medical issues publicly and on social media this past June, so it"s all still a little new being so open. Less of a taboo around it would be nice. Also, if restaurants and food producers would stop using latex gloves, that would make my world much easier. If anything is handled with latex gloves, I can't eat it and it makes my stomach really upset, so that makes eating a lot more limited for me. Lots of phone calls and conversations about latex gloves (which most people have never heard of, so I'm explaining that a lot). Also, everyone wear a damn mask and wash your hands cause I'm high risk and I really don't want to end up in an ICU on dialysis if I get COVID.Do you have any life hacks? Coping mechanisms?Journaling and songwriting for me have also been really helpful. And even though most people say I'm a very positive person, my journals are often really negative and not fun to re-read. Just lots of venting. And songwriting helps me process all of that too. And then I think just being aware of what does energize me, like taking walks (though I've needed a walking stick since the new catheter was put in) and playing music. Like when I have days that I'm stuck in the bathroom, lately I've been trying to bring a notebook in there and write songs, which is more energizing than binge-watching Netflix (though my bathroom adventures improved with invention of Smart phones and laptops, lol. Definitely helps to pass the time). Also, support groups online are really nice. I'm in a few Facebook groups for Latex Allergies and VATER Association and it's really nice to be able to talk with other people or read posts about people going through similar things. And even just searching hashtags on Instagram has been helpful. Like as soon as my urologist told me I needed a suprapubic catheter in June, I walked out of her office and searched #suprapubiccatheter on Instagram to see what it was like. And people to post pictures and stories about living with them. That was really helpful to see what I'd be getting into. It provides comfort since growing up I kind of felt like I was the only one in the world with all of these medical issues.Support from family and friends? Has your disorder affected your relationships?Yeah, I'm very grateful for the family I have. I kind of felt like I won the lottery with my family. My Mom managed all of my medical routines and appointments when I was a kid. And this was before the internet, so she was very good at self-educating. I remember doctors would always ask her during my appointments, "Oh, do you have a medical background?" And she would just be like, "No, I just learned it all from Laura". She is very organized and would look things up and really have an understanding of what was going on with me. And could pursue other treatment options too. And we were fortunate to always have good health insurance with my Dad's job and them my Mom's job so I was never aware of any financial stress as a kid. My parents and sister are very supportive of it and I still feel like I can ask my Mom medical questions I have. As a speech pathologist who works with children who have special needs, I've seen how hard it can be when families don't have a good understanding of what is going on medically, if there's denial, if they have have trouble managing all the home care and appointments or just have financial stress, and it makes life a lot harder. So I am really grateful for the family I grew up in. As a kid, I did experience a lot of teasing. I had the nickname "pampers" from 3rd grade through about 8th grade, which was not fun. And even close friends I told about my feeding pump in 6th grade were pretty mean about it, so I learned from an early age to be really secretive about my medical stuff. That if I told people outside of my family, it felt like I would be rejected. So I really didn't tell anyone outside of my family about it until college, which in hindsight, helped create a lot of shame around it. And it made dating more challenging. I've had 33 operations, so I have a lot of scars and my anatomy is a little different. And getting to know guys more intimately always brought up questions. And then it felt like I had to have this big "medical talk" with guys. I guess it proved to be a good filter for dudes who were more superficial, but it didn't make the rejection sting any less, especially cause it's hard when you feel like you're being rejected for something you can't control. I had one guy tell his Mom about it and she advised him against settling down with "someone like her cause that medical stuff makes life much harder" and another dude who said "I don't want to deal with this medical stuff my whole life" and those two instances were pretty heartbreaking at the time. Although I think I had a real insecurity in college and would project and say things like, "why do you wanna be with someone like me who has all this stuff" as a way to be reassured, but overtime, I get that it becomes a turn off. But I did realize what I was doing in hindsight and now just try to say, "You know, today I'm feeling insecure about X" instead of projecting it. And now I have a really supportive partner now. We've been together for 4 and a half years. He knows all of my medical stuff and has slept in bed beside me while I had a urinary drainage bag and has driven me to the ER and waited in the waiting room while I've had surgery. He is very

DISORDER INFOWhat is your disorder? *So many! Mast cell activation issue, interstitial cystitis, vulvodynia, fibromyalgia - to name a fewAt what age did your disorder become a daily issue? *43Who were you before your illness became debilitating? *Such a great question. Who was I? I was a full-time college professor.What would you do if you were not dealing with your disorder and/or disability? *This is hard to answer because, on one hand, I wish I could go back to my full-time working life, but on the other hand, my illnesses have opened up other worlds for me with writing and creativity. What would you like people to know about your daily life? *It is much harder than people without chronic illness may imagine. I put on a good show and there are many positives in my life, but it is a struggle. What would make living and moving in the world easier for you? *More compassion, understanding, and knowledge - from medical providers and the general community.Do you have any life hacks? *Naps! Do something creative! Meditate!What kind of support do you get from family or friends? *I am lucky - I have a great circle of support. Many do not. 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? *One doctor suggested that the symptoms I had could be explained by psychiatric issues. I highly doubt that a male-identifying person would have been told the same thing. Another care provider seemed only concerned about my weight, as if that was the cause of all my issues. I have to return once a year for ongoing care from that second person, and I dread it every time, but I get the medical equipment I require as a result. How has your chronic illness affected your relationships? *Some have been made stronger. Others have lapsed.Is there anything you are afraid to tell people in your life? *At the height of my physical pain, it was hard to discuss how I was feeling - physically and emotionally.What is your best coping mechanism? *Naps! Reading! Podcasts like this one!What are you the most concerned about and the most hopeful for in the future? *I worry that those with chronic illness can be even more isolated during the pandemic. I am hopeful that perhaps chronic illness will get more REAL attention as COVID patients are reporting (unfortunately) long-last side effects. Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.I'd like to talk about my first book that came out this spring. I consider it a major life accomplishment, even more because I did it while dealing with chronic illness.What makes you energized or enthusiastic? What drains you?Energized = connection with others. Draining = dealing with bigots, people who have not used the pandemic to focus on what is essential.Any favorite books or shows?My wife and I missed Parks & Recreation when it was on network TV, but are really enjoying it now through Netflix!What is the hardest and/or best lesson your condition has taught you?I am stronger than I ever thought possible. What is the best purchase under $100 that helped your lifeYou are Not Your Pain - book with an accompanying CD that provides guided meditations for those with chronic pain, written by those with chronic pain - it helped me when nothing else yet did.Any questions you think we should add to this list?Who has been the most helpful to you? Least helpful? And why? What is one thing you do every day, without fail. (What is one thing you WISH you did every day, without fail.) Other than sleep, what do you spend the most time doing every day? What is your favorite EASY recipe that you can make without exhausting yourself? What are you reading right now? What is the best medical advice you ever got? The worst? (I will stop with my stream of consciousness now or I could be here all day!) :)

Social Handles, Blogs, Websites, and Hashtagswww.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 allergyWhat would you be doing and who would you be if you were not managing chronic illness/ disability?Good question. I think it could be easier to pursue a career as a musician and songwriter without needing amazing health insurance. I have friends who can afford to have less comprehensive health plans or just quit their "day job" to tour for 6 months (pre-COVID obviously). Or can move between jobs easier or have jobs with more flexibility to a degree. I've always felt that I needed that safety net. I am grateful to have a degree and a job with a steady income and insurance, obviously, but at times, it can feel limited with what I really want to do with my life in terms of music. Some of that speaks more to our healthcare system in the US rather than living with a chronic illness I guess. But it just always felt like there are certain rules I need to "play by" that not everyone else has to follow. There's also a big-time management piece in terms of everything I do to manage my birth defects. A bowel management routine and a big list of foods that make my stomach upset have been hard and limiting. In general, I have a pretty good system in place to manage it, but are still days that end up in the bathroom for hours, which can be frustrating. I usually check every ingredient before eating something, and I can still have an issue with a negative reaction.What would you like people to know about your daily life?Just all of the work that it takes behind the scenes to pull off the illusion of being "normal". Like I get up three hours before I have to leave the house in order to get ready. I have a bowel management plan, a catheter that needs flushing and cleaning and that's changed once per month. And before this catheter, I was prone to urinary retention, which leads to ER visits. I actually had three surgeries this past summer (in the middle of the pandemic) to put in this catheter and that impacted mobility and just overall comfort for a while (and still does to a degree, though it's improving). It's a bit of an "invisible illness" too in that most people wouldn't know about it if they met me on the street or interacted in the day to day. I always have a bag on me with extra supplies in case my stomach gets upset or I have issues with my catheter. I also have a giant water bottle on me cause I'm prone to dehydration and UTIs so I do my best to avoid that. It's a lot of calculations and planning for worst case scenarios I guess. I also see about 6 different doctors every year and have regular pills/perscriptions and ultrasounds and bone density scans to manage everything, and that's without any extra complications, like the catheter/urinary adventures this summer. And just the added expense that goes to healthcare, doctor's visits and all my regular orders to medical suppliers and CVS to manage everything. Again, it just takes a lot of planning and organization (which are not my strengths, lol) that people don't necessarily see or know about. And this is all going on while I work a full time job and try create a career as an independent artist and songwriter. And I do consider myself very lucky to be able to work and play music, cause I know not everyone with a chronic illness can. It's managing the frustration (and acknowledging that it's okay to be frustrated) while also having gratitude for what I can do, I guess.What would make moving through the world easier for you?More understanding and awareness about bowel/urinary disorders. Most people don't know about it and there is a bit of a taboo and negative stigma around any type of incontinence. It made me feel like I had to hide it growing up, which created a lot pf shame that I'm still working through. I only started talking about my medical issues publicly and on social media this past June, so it"s all still a little new being so open. Less of a taboo around it would be nice. Also, if restaurants and food producers would stop using latex gloves, that would make my world much easier. If anything is handled with latex gloves, I can't eat it and it makes my stomach really upset, so that makes eating a lot more limited for me. Lots of phone calls and conversations about latex gloves (which most people have never heard of, so I'm explaining that a lot). Also, everyone wear a damn mask and wash your hands cause I'm high risk and I really don't want to end up in an ICU on dialysis if I get COVID.Do you have any life hacks? Coping mechanisms?Journaling and songwriting for me have also been really helpful. And even though most people say I'm a very positive person, my journals are often really negative and not fun to re-read. Just lots of venting. And songwriting helps me process all of that too. And then I think just being aware of what does energize me, like taking walks (though I've needed a walking stick since the new catheter was put in) and playing music. Like when I have days that I'm stuck in the bathroom, lately I've been trying to bring a notebook in there and write songs, which is more energizing than binge-watching Netflix (though my bathroom adventures improved with invention of Smart phones and laptops, lol. Definitely helps to pass the time). Also, support groups online are really nice. I'm in a few Facebook groups for Latex Allergies and VATER Association and it's really nice to be able to talk with other people or read posts about people going through similar things. And even just searching hashtags on Instagram has been helpful. Like as soon as my urologist told me I needed a suprapubic catheter in June, I walked out of her office and searched #suprapubiccatheter on Instagram to see what it was like. And people to post pictures and stories about living with them. That was really helpful to see what I'd be getting into. It provides comfort since growing up I kind of felt like I was the only one in the world with all of these medical issues.Support from family and friends? Has your disorder affected your relationships?Yeah, I'm very grateful for the family I have. I kind of felt like I won the lottery with my family. My Mom managed all of my medical routines and appointments when I was a kid. And this was before the internet, so she was very good at self-educating. I remember doctors would always ask her during my appointments, "Oh, do you have a medical background?" And she would just be like, "No, I just learned it all from Laura". She is very organized and would look things up and really have an understanding of what was going on with me. And could pursue other treatment options too. And we were fortunate to always have good health insurance with my Dad's job and them my Mom's job so I was never aware of any financial stress as a kid. My parents and sister are very supportive of it and I still feel like I can ask my Mom medical questions I have. As a speech pathologist who works with children who have special needs, I've seen how hard it can be when families don't have a good understanding of what is going on medically, if there's denial, if they have have trouble managing all the home care and appointments or just have financial stress, and it makes life a lot harder. So I am really grateful for the family I grew up in. As a kid, I did experience a lot of teasing. I had the nickname "pampers" from 3rd grade through about 8th grade, which was not fun. And even close friends I told about my feeding pump in 6th grade were pretty mean about it, so I learned from an early age to be really secretive about my medical stuff. That if I told people outside of my family, it felt like I would be rejected. So I really didn't tell anyone outside of my family about it until college, which in hindsight, helped create a lot of shame around it. And it made dating more challenging. I've had 33 operations, so I have a lot of scars and my anatomy is a little different. And getting to know guys more intimately always brought up questions. And then it felt like I had to have this big "medical talk" with guys. I guess it proved to be a good filter for dudes who were more superficial, but it didn't make the rejection sting any less, especially cause it's hard when you feel like you're being rejected for something you can't control. I had one guy tell his Mom about it and she advised him against settling down with "someone like her cause that medical stuff makes life much harder" and another dude who said "I don't want to deal with this medical stuff my whole life" and those two instances were pretty heartbreaking at the time. Although I think I had a real insecurity in college and would project and say things like, "why do you wanna be with someone like me who has all this stuff" as a way to be reassured, but overtime, I get that it becomes a turn off. But I did realize what I was doing in hindsight and now just try to say, "You know, today I'm feeling insecure about X" instead of projecting it. And now I have a really supportive partner now. We've been together for 4 and a half years. He knows all of my medical stuff and has slept in bed beside me while I had a urinary drainage bag and has driven me to the ER and waited in the waiting room while I've had surgery. He is very

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

Interview with author and disability advocate Olivia Gaynord AboutHer Book I’m GoodFeeling Like you Are Doing Enough When you have Chronic IllnessMental Health and the writing processBook Writing ProcessCrowd Funding a BookChronic Illness and WritingToo Far and Never Enough The PT dance of EDSThe Great British Bake Off BakingHow to Use Mental Health IssuesIf you enjoy this episode please subscribe to Monica Michelle’s newest podcast Explicitly Sick

Website/Blog, Twitter, & Instagram HandleTwitter: @CarrieALightleyhttps://www.carrieannlightley.com/Name *Carrie-Ann LightleyWhat is your disorder? *Cerebral PalsyAt what age did your disorder become a daily issue? *0Who were you before your illness became debilitating? *I've always been disabledWhat would you do if you were not dealing with your disorder and/or disability? *I wouldn't be me!What would you like people to know about your daily life? *I LOVE my life – wonky, uncooperative, wheelchair-using body and all – I wouldn’t be the person that I am without Cerebral Palsy, and I wouldn’t want to be anyone else.What would make living and moving in the world easier for you? *More detailed, accurate accessibility information for venues, transport and services.Do you have any life hacks? *Maternity jeans! I'm not (and not planning to be) pregnant but have been wearing maternity jeans for a while now and I'll never go back. Like many wheelchair users I have poor muscle tone in my stomach, so my tummy sticks out. Wearing 'normal' jeans when I'm sitting all day is really uncomfortable.What kind of support do you get from family or friends? *I live with my husband and he helps me with all the day to day life things I need assistance with - housework, cooking, driving. I'm also lucky to have a lot of supportive family and friends who step in when need be.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? *NoHow has your chronic illness affected your relationships? *I feel like being visibly disabled makes me an excellent judge of character. I can tell within minutes of meeting someone, whether they're my kind of people.Is there anything you are afraid to tell people in your life? *No, I try to be very open.What is your best coping mechanism? *Reading. It helps me to relax physically, allowing my body to recover, and mentally it gives me an escape.What are you the most concerned about and the most hopeful for in the future? *I'm both hopeful and concerned about traveling again.Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.I'd like to be able to promote my blogWhat makes you energized or enthusiastic? What drains you?Exercise and creativity energize me. Overworking drains me, but is a coping mechanism that I'm trying to let go of.Any favorite books or shows?Henry Fraser's Little Big Things and Poorna Bell's In Search of Silence are my favorite recent reads. Grey's Anatomy is my all-time favorite show!What is the hardest and/or best lesson your condition has taught you?Both the hardest and the best - resilience What is the best purchase under $100 that helped your lifeA laptop case/travel bag that hangs on the back of my wheelchair

Sunny and I talked about our favorite topic: *Tech and disability, specifically *Virtual Reality and chronic illness. *Oculus 2 *Inktober, NaNoWriMo, and creating during Covid *Lovecraft Country and some issues *Martyr vs. Trickster Political activism (think #proudboys gay takeover and the brilliant George Takei) *Game development and empathy *Concerts, Comic Con at home, and Burning Man access for the disabled with Virtual Reality *NORD *Wheelchair VR game Awake INN *Sexism in Virtual Reality

MentionsALinkerCMT Awareness MonthWebsite/Blog, Twitter, & Instagram HandleFacebook, @gayleweenie on InstagramName *Lisa WeinerDisorder InfoWhat is your disorder? *Charcot-Marie-Tooth diseaseHow To Vote By Mail In California: 2020 General Election: August 25, 2020 (full article detailed below).https://patch.com/california/across-ca/how-vote-mail-california-2020-general-election“Once your mailed-in ballot is completed, it can be inserted into the provided envelope and sent to your local county elections office.You can also return your ballot by:Bringing it in-person to any nearby polling place or elections office before 8 p.m. on Election Day, November 3.Dropping it into one of your county's ballot drop boxes before 8 p.m. on Election Day.Authorizing someone else to return the ballot on your behalf. (If you do this, you must fill out the authorization form on the back of the ballot envelope you receive.)If you are not yet registered to vote, you can register online here, up until October 19. California also offers same-day registration, which can be done on Election Day at your local polling place.If you need to change your address to vote by mail, you can:Write to your local county elections officialFill out this online application, print, sign, and date it, and then mail it to your county elections office. (Also available in Spanish, Chinese, Hindi, Japanese, Khmer, Korean, Tagalog, Thai, and Vietnamese)Or, fill out the application printed on the voter information guide, which is mailed to every voter by their county elections office before the electionVisit the California Secretary of State's website for more information about how to vote in this fall's General Election.”CA 2020 Election: Voting In Person; What To Know: September 30, 2020 (click link below for full article)https://patch.com/california/across-ca/ca-2020-election-voting-person-what-knowMain points:*Governor Gavin Newsom made an executive order to mail absentee ballots to every registered voter in California.Though everyone will get a ballot in the mail, some will inevitably need to visit a polling place for many reasons — for lost or damaged ballots or for language or disability assistance. Some will need to register last minute on Election Day, which state law allows at polling sites.In person voting: begins as early as October 31 and ends on election day, Tuesday, November 3, at 8 PM. There will be fewer polling places per county than usual, so as to limit spiraling lines/congestion and mitigate spread of COVID-19. Also, due to pandemic, many usual polling locations i.e., retirement homes, community centers and churches are closed.Find your polling place by using this form on the California Secretary of State's website. California Secretary of State, Elections Division, 1500 11th St., 5th Floor, Sacramento, CA 95814 Phone: (916) 657-2166, (800) 345-VOTE (8683), (800) 833-8683 (TTY/TDD) Website: www.sos.ca.gov/elections/Register to vote or check if your registration status is active here.If voting in person, you should bring your mailed ballot with you to your nearest polling place. Since all CA voters were mailed ballots this year, this is proof that you didn't already mail your ballot and vote twice.However, if you forget to bring your ballot to polling place, or it became lost in the mail, you may need to vote provisionally. This means that your vote may be subject to a screening. Officials may want to verify your registration status or confirm that it wasn't already mailed. With these extra steps, a vote may not be counted on Nov. 3, but it will eventually.Also, voters should arrive with the proper COVID-19 protective gear. Poll workers are instructed to keep their distance and wear masks. They will provide face coverings to voters who need them.Voting with a Disability: Federal law requires that people with disabilities have access to vote on Election Day.Federal law requires at least one accessible voting system in every in-person voting center. However, it’s best to connect with your local election officials to confirm an accessible polling location in your area.If your assigned polling location is not accessible, you have the right to be reassigned to an accessible polling place or to be provided an alternative method of voting.If you encounter a barrier when you arrive, talk with a poll worker or election judge present to make accommodations.A person has the right to ask to vote curbside, in a car/vehicle if the polling place is not accessible.A person has the right to have a friend, family member, or polling staff help them to vote. The Voting Rights Act of 1964 states that any voter requiring assistance to vote because of a disability will have the ability to bring a person of their choice to assist them in casting their ballot. Though polling staff should be trained in accessible voting, that may not be reality at your polling location.A person also has the right to refuse help with voting if they don’t need it.Other voting resources: For general and accurate voting information: https://vote.gov/ and https://www.healthyvoting.org/You can track your ballot on California’s ballot tracker: https://california.ballottrax.net/voter/American Association of People with Disabilities; https://www.aapd.com/wp-content/uploads/2020/10/State-Voting-Guide-California.pdf (this is a thorough guide of voting resources including ones detailed below).To request remote accessible vote by mail, need to request by October 27. https://www.sos.ca.gov/elections/voting-resources/remote-accessible-vote-mailNational Association of the Deaf (NAD); American sign language (ASL) voting hotline: 301-818-VOTE or 301-818-8683; https://www.nad.org/asl-voter-hotline/National Federation of the Blind (NFB): they have voting information you can download in Word, braille, Word in Spanish, braille in Spanish, and a specific guide for young people, also in braille. They also have voter guide videos in English and Spanish. https://www.nfb.org/programs-services/center-excellence-nonvisual-access/national-center-nonvisual-election-3.Self advocates becoming empowered for voting and guardianship. Website includes informative videos on how to deal with potential voting problems at polling location. https://www.sabeusa.org/govoter/voting-info/voting-and-guardianship/.Autistic Self Advocacy Network (ASAN): A Self-Advocate’s Guide to Voting in the U.S. https://autisticadvocacy.org/policy/toolkits/voting/California easy voter guide; https://easyvoterguide.org/Voter’s Edge California: https://votersedge.org/caDisability Vote California: https://disabilityvoteca.org/Disability Rights California: for voting publications https://www.disabilityrightsca.org/resources/voting. Disability Rights California: 1831 K Street, Sacramento, CA 95811; Phone: 916-504-5800, 800-719-5798 (TTY), 800-776-5746 (Toll Free); info@disabilityrightsca.org; www.disabilityrightsca.org/Election protection hotline: 866-OUR-VOTE (866-687-8683); https://866ourvote.org/The Muscular Dystrophy Association (MDA), recently sat down with Pennsylvania Senator Bob Casey, about accessible voting and what he’s doing in Congress to make voting more accessible for individuals living with disabilities. Click here to watch video: https://youtu.be/9e4w6bc5lkg . And, link for MDA‘s Advocacy Institute on accessible voting: https://strongly.mda.org/know-your-voting-rights-on-election-day-2020/.National conference on state legislators: voting info by state and how to restore voting right after a felony conviction. In 2016, California passed legislation allowing those in county jails to vote while incarcerated, but not those in state or federal prison. https://www.ncsl.org/research/elections-and-campaigns/felon-voting-rights.aspx.Attachments areaPreview YouTube video MDA Advocacy Institute Session 4: Accessible VotingMDA Advocacy Institute Session 4: Accessible VotingAt what age did your disorder become a daily issue? *29Who were you before your illness became debilitating? *I was a happy, healthy, young adult, recently moved in with my then-boyfriend, working full-time at a healthcare consulting company. Also, I had recently applied to masters public health program.(MPH) programs though was rejected from all 3 programs, where I applied. Though disappointed, I was still optimistic, and certain I’d find another way for career advancement or development.What would you do if you were not dealing with your disorder and/or disability? *Writing more, dancing, graduate school, traveling, volunteering in person, socializing a lot more with friends and family, having children (though can’t anymore at age 49)... I did want to be a mother/have children.What would you like people to know about your daily life? *This is probably TMI, too much information but here’s my answer:-): My daily life varies tremendously, depending on previous days activities, sleep, and the priorities to accomplish for the day. I frequently feel like a young person in an older person’s body. Therefore, everyday tasks/activities often take longer for me, and utilize spoons, like taking a bath, getting dressed, putting shoes and braces on, etc. I often arrange MD or other health-related appointments, and sometimes transportation. I manage a multitude of healthcare paperwork, and receipts for medical deductions. Also, I usually stretch and do some movement each day. And like most people, I check and answer email, as well as read, research, shop and/or connect online. Though admittedly, I tend to find social media overwhelming and fatiguing, So, social media is usually my last priority. I’m definitely open to suggestions for mitigating social media fatigue. Typically, I prefer to text, email, call, FaceTime or zoom with close friends and family. Additionally, a couple of days a week I play mah-jongg with friends, and a couple of days a week I go to the local Peninsula Jewish Community Center (PJCC) for Pilates exercise or community events/activities, pre-COVID-19. I lo

Death With Dignity State LawsAdvance Care Planning for Alzheimer’s Disease or DementiaFinalexit.orgJohn Abraham’s when we decide how someone else should die we are playing god.Compassion and ChoicesDeath CafeCovid end of life and choices

Website/Blog, Twitter, & Instagram HandleInsomniaDoodles.com, @InsomniaDoodles (on Twitter), @theinsomniadoodles (on instagram)Name *Sunshine "Sunny" AmmermanDisorder InfoWhat is your disorder? *Septo-Optic Dysplasia, which is a larger rare diagnosis that encompasses two other rare diagnoses, Panhypopituitarism and Optic Nerve Hypoplasia. I am also missing a membrane in my brain called the "septum pellucidum". At what age did your disorder become a daily issue? *0Who were you before your illness became debilitating? *Just an outdoorsy kid with a big imagination! My symptoms started to become gradually more debilitating in high school, so I didn't really have the chance to do much more than dream about what I thought I wanted my future to be like. My symptoms became unavoidably debilitating when I was in my early 20s.What would you do if you were not dealing with your disorder and/or disability? *I would be getting myself into all kinds of (good) trouble either as a journalist or legislator, more than likely. I would have loved to travel, meet as many different people as possible, and make a difference in some way. I think I have an activist's spirit. Having a rare disease and invisible disability just gave me a clear path to put that enthusiasm to work!What would you like people to know about your daily life? *I have no idea what kind of day I'm going to have until I wake up that day and assess my symptoms and energy levels. I'm a D&D nerd, so I like to compare it to waking up and rolling a D20. Sometimes it's a natural 1, other times it's just fine, but it's hard to make plans ahead of time when you never know what any given day has in store for your body's ability to function. What would make living and moving in the world easier for you? *Breaking the stigma of invisible illnesses and disabilities throughout our society would help tremendously, but practically speaking, as a partially blind person who can not drive due to my low vision, access to reliable, affordable transportation is KEY to my independence. I wanted to take an undergraduate digital art class at Purdue last year, and I lost that opportunity simply because I couldn't find transportation to go to that class, despite having swallowed my pride and asking everyone I could think to ask for help. That was disheartening, but inspired me to put more pressure on local leadership, which led to our previous mayor lovingly calling me "trouble" as a nickname! haha Do you have any life hacks? *Yes, indeed! UTILIZE TECHNOLOGY! Robots are our friends! I have smart speakers in my house that I have scheduled to remind me when to take my meds throughout the day as well as reminding me to take time to exercise or meditate, get ready for bed, and simply to eat lunch. I'm almost 30 years old, and until I started doing this, I had a bad habit of forgetting to take my meds (even though I've been taking them multiple times a day every day since I was 13. oops). Other than my speakers, I use Trello to help keep my tasks in order since its not uncommon for me to experience brain fog and totally forget important things on my mental to-do list. I also rely on my smart watch to help track health data relevant to my care plan. What kind of support do you get from family or friends? *I have been so, so lucky to have a partner who is understanding, patient, and more kind to me than I am to myself sometimes. He has seen me at my absolute lowest points and helped to carry me through it. He is incredible. I'm also super lucky to have friends and family members who understand and are willing to learn about and adapt to my needs. Of course, I've also encountered some family members and acquaintances who have been less than kind to me, and I've experienced some judgement and skepticism that stung, but I've learned over time that you can't win them all, so it's really their loss that they don't get to have me in their life. I don't put up with people like that if I can help it. "ya-yeet" as the kids say these days 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? *OH BOY DO I. I'll share one experience in particular that is still vividly clear in my memory because I was so livid when it happened. I used to work at Kroger, and I actually loved my job there. I have a great work ethic, and this was before my body put its proverbial foot down and insisted on not working anymore. My bosses loved my gusto, and I'm a people-pleaser so I would often come in on my days off if called and fill in anywhere I was needed. I had been working there for about eight months or so and management hired a new manager, who was unaware of my health issues. When I was hired on initially, I warned the manager who had interviewed me about my potential health problems. I had told him before the interview was even over that I may eventually just not be able to continue working, because that had happened to me in the past at another job. He decided to give me a chance, and so I gave this job everything I had, I was so grateful. Anyway, this new manager came in with no idea about the warning I had given my other boss, and she saw my work ethic and was impressed. She offered me a promotion! I was asked to manage my very own department within the store. When she pitched this idea to me, I was ECSTATIC. I was just so overwhelmed with joy that someone trusted me enough to manage an entire department on my own, so I told her yes without really thinking too much about it. Later on when I had more of a chance to think, I had to acknowledge that lately my symptoms had been getting worse. I had already had an adrenal crisis that put me in the hospital, and a subsequent illness that put me out of commission for a couple of weeks. Since then, my daily symptoms had worsened and I never felt fully recovered. Recognizing the signs that had forced me to leave my previous job, I just didn’t think it would be responsible for me to take on a management role by myself. If I had to miss work for any amount of time, my department would suffer, and that would in turn reflect negatively on the entire store. Despite my eagerness to please, I decided to go back into her office the next day (on my day off, mind you) and talk to her about it. I asked if the other manager had told her about my health condition. She said he had not, so I went on to explain what my diagnosis is, and how it affects my body’s ability to function. I poured my heart out to her, and told her very personal information that made me feel so vulnerable. Admitting you have limits SUCKS, but I needed her to understand. After I explained it the best way I could, I went on to say that as much as I felt honored that she wanted me to take on this promotion, I thought the store should pick an employee that will be better able to keep up with a management role. She then looked me right in the eyes and said “You know what I think? I think you don’t WANT to do it.” I remember standing there in stunned silence for a few seconds. I can still feel the ways my ears and cheeks filled with heat, my hands started to tremble. I wanted to grab her by her skinny ableist neck and shake vigorously, but somehow I managed to keep calm. I am proud of what I said next; “I understand how having an employee who isn’t doing what you want them to do might be frustrating for you, but imagine what it’s like having a body that doesn’t do what you want it to do.” I don’t think she really grasped how serious she screwed up, because she had the audacity to ask me again to take the management role. I told her no, and left. I continued to work there for a few months more before my health deteriorated too much to continue, and I faced more discrimination from her, which I can discuss on the show. My co-workers were in my corner, and when they saw the way she was treating me, they stepped in, which was amazing of them. I tear up still thinking back on that. How has your chronic illness affected your relationships? *It caused some strife between my father and I. I still have some painful memories of him blatantly telling me he thought I just wasn't trying hard enough even though I was facing severely debilitating symptoms. We didn't talk for a brief time after that, but he came around eventually and now understands the reality of my situation. Other than that, I have actually been really lucky to have friends and family who are really understanding and still invite me to things even though they understand I might not always be able to come, and they never let me feel guilty for cancelling plans. Is there anything you are afraid to tell people in your life? *Honestly? No, I'm an open book. I used to be shy about sharing the reality of my situation, but when I came to the realization that hiding the truth fuels the stigma faced by the invisible illness community, I couldn't let myself contribute to that anymore. Now, I'm unapologetically open about what I go through. I do want to point out that despite being open, I am careful not to come across as negative or a "complainer". I think it's absolutely possible to share the way our conditions affect us without wallowing in it. Not saying we should dive into toxic positivity and act like it doesn't suck, because it absolutely does sometimes, I just like to make sure people understand I don't want pity, I want understanding. What is your best coping mechanism? *Do naps count? I do enjoy a good old-fashioned nap sometimes. Other than that, I've found that just talking things through with someone who REALLY understands and cares about you is the most healing thing I've ever done for myself. What are you the most concerned about and the most hopeful for in the future? *I'm concerned about healthcare access for people like myself who CAN NOT go without constant medical care. I am personally a big proponent of medicare for all, and seeing insur

Elizabeth Gilbert and Tim FerrisElizabeth Gilbert TED Talk on Mental Health and CovidWatchmen and Tulsa MassacreLovecraft Country and Jim Crow A few topics we Tinu and Monica Michelle covered:Black Hair Care and chronic illnessMonica’s easily matted jewish haircare and dislocationsRolling blackouts. disability, and NigeriaBlack Live Matter MovementFirst Nations Racism and Socialized MedicineRace and Hollywood’s Responsibility to Educate on History : Lovecraft Country and The WatchmenYOU DON’T HAVE TO EARN RESTDisability and parentingBedside MannerTinu's Info & LinksTinu Abayomi-Paul-Author, creatorof #EverywhereAccessible Founder of @EveryAcess, Activist, Survivor, cancer Chronic Pain, and black woman.HASHTAGS TO LOOK FOR PEOPLE TO FOLLOW#DISABLEDBLACKTALK#DISABLEDPEOPLEFORBLACKLIVESRESOURCES HISTORY OF THE POLICE OFFICERS LINKSHOW THE U.S. GOT ITS POLICE FORCENATIONAL LAW ENFORCEMENT MUSEUM: SLAVE PATROLS: AN EARLY FORM OF AMERICAN POLICINGPEOPLE TO FOLLOW@OSOPEPATRISSE @OPALAYO @ALICIAGARZA @KAILEESCALES @THEKINGCENTER @EVERYACCESS @UNITEDWEDREAM@4WheelWorkOutWEBSITEShatewatch.orgBOOKS TO READ: Born A CrimeCoretta Scott King Book Award Winners: books for children and young adults31 Children's books to support conversations on race, racism and resistanceBlack Feminist Thought by Patricia Hill CollinsEloquent Rage: A Black Feminist Discovers Her Superpower by Dr. Brittney CooperHeavy: An American Memoir by Kiese LaymonHow To Be An Antiracist by Dr. Ibram X. KendiI Know Why the Caged Bird Sings by Maya AngelouJust Mercy by Bryan StevensonMe and White Supremacy by Layla F. SaadRaising Our Hands by Jenna ArnoldRedefining Realness by Janet Mock Sister Outsider by Audre LordeSo You Want to Talk About Race by Ijeoma OluoThe Bluest Eye by Toni MorrisonThe Fire Next Time by James BaldwinThe New Jim Crow: Mass Incarceration in the Age of Colorblindness by Michelle AlexanderAFFIRMATIVE ACTION: The Guidelines address what appears to be a conflict between the statutory prohibition against considering race, sex, and national origin in making employment decisions, and the need, often through affirmative action, to eliminate discrimination and to correct the effects of prior discrimination.  FIRST NATION MISSING GIRLS & LAWSFATHER OF GYNECOLOGYADVICE:BE CLEAR ASK WITH AN IDEAHOW TO 'USE AND SHAREMY PRIVILEGE TO LEVERAGE HELP'HOW DO WE GIVE PEOPLE THE RODCOMPANY 'ACTIVISM' - LATER, TREVOR NOAH NICKOLO DI ANCOLOR BLINDNESS: THE PROBLEMSHOW TO AMPLIFY: INCLUSION RIDERSWHAT CAN WE DO TO PUSH THE BLACK VOICE-CREATE A DAY THE 13 FOR SUPPORT OF BLACK ARTISTS, MAKERS, STORYTELLERS. ON THE 13 COMPANIES SHOULD TAKE THAT TIME TO LISTEN TO THEIR WORKERS ABOUT WHAT IS NEEDED N THEIR COMPANIES.USE YOUR LIBRARYLIST OF AUTHORS TO START WITHSUPPORT PROTESTS FROM BED:CONTACT LOCAL COMMUNITY ORGANIZERS SUPPLIES, PRESS AGENT, LEGAL HELP , HELP WITH ACCESS. NOTIFY PERSON , FOOD COORDINATE. HASHTAG HELP HOW CAN TECH WORKERS HELP?USE A DAY FOR BLACK MONEY TO BLACK ARTISTSDISABILITY ACCESS AND POLITICAL ACTIVISMSICK WHILE BLACK. GETTING MEDS.

Website/Blog, Twitter, & Instagram Handlehttp://www.sgbigham.com/Topics CoveredActivism and DisabilityA Welcome to All Who Are New To Chronic Illness Due to CoVid RecoveryUsing Your Covid TimePrivilege and Chronic IllnessVisibility for Invisible Illness With Art And WritingSelfcare as an Act of Selflove to Future YouVaginal Disorders and the Medical EstablishmentLGBTQ+ and the Medical EstablishmentAttached is a sample chart of assignments for one of the community college classes I teach. (The syllabus has lot of school and course-specific information that won't be useful to the general public, but hopefully the chart gives a good idea of how students show their learning in ways that are not tests.)*Diane Ravitch's blog: https://dianeravitch.net/*Washington Post article about low-income students dropping out of college this fall: https://www.washingtonpost.com/business/2020/09/16/college-enrollment-down/*Newsweek article I mentioned about teachers resigning: https://www.newsweek.com/teachers-resigning-across-us-cite-remote-learning-frustrations-covid-19-concerns-1528553*On Teaching series by The Atlantic: https://www.theatlantic.com/education/category/teaching-education-history/*Organizations I mentioned:https://rethinkingschools.org/https://www.tolerance.org/https://diversebooks.org/https://www.blacklivesmatteratschool.com/Name *Sarah BighamDisorder InfoWhat is your disorder? *So many! Mast cell activation issue, interstitial cystitis, vulvodynia, fibromyalgia - to name a fewAt what age did your disorder become a daily issue? *43Who were you before your illness became debilitating? *Such a great question. Who was I? I was a full-time college professor.What would you do if you were not dealing with your disorder and/or disability? *This is hard to answer because, on one hand, I wish I could go back to my full-time working life, but on the other hand, my illnesses have opened up other worlds for me with writing and creativity. What would you like people to know about your daily life? *It is much harder than people without chronic illness may imagine. I put on a good show and there are many positives in my life, but it is a struggle. What would make living and moving in the world easier for you? *More compassion, understanding, and knowledge - from medical providers and the general community.Do you have any life hacks? *Naps! Do something creative! Meditate!What kind of support do you get from family or friends? *I am lucky - I have a great circle of support. Many do not. 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? *One doctor suggested that the symptoms I had could be explained by psychiatric issues. I highly doubt that a male-identifying person would have been told the same thing. Another care provider seemed only concerned about my weight, as if that was the cause of all my issues. I have to return once a year for ongoing care from that second person, and I dread it every time, but I get the medical equipment I require as a result. How has your chronic illness affected your relationships? *Some have been made stronger. Others have lapsed.Is there anything you are afraid to tell people in your life? *At the height of my physical pain, it was hard to discuss how I was feeling - physically and emotionally.What is your best coping mechanism? *Naps! Reading! Podcasts like this one!What are you the most concerned about and the most hopeful for in the future? *I worry that those with chronic illness can be even more isolated during the pandemic. I am hopeful that perhaps chronic illness will get more REAL attention as COVID patients are reporting (unfortunately) long-last side effects. Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.I'd like to talk about my first book that came out this spring. I consider it a major life accomplishment, even more because I did it while dealing with chronic illness.What makes you energized or enthusiastic? What drains you?Energized = connection with others. Draining = dealing with bigots, people who have not used the pandemic to focus on what is essential.Any favorite books or shows?My wife and I missed Parks & Recreation when it was on network TV, but are really enjoying it now through Netflix!What is the hardest and/or best lesson your condition has taught you?I am stronger than I ever thought possible. What is the best purchase under $100 that helped your lifeYou are Not Your Pain - book with an accompanying CD that provides guided meditations for those with chronic pain, written by those with chronic pain - it helped me when nothing else yet did.Any questions you think we should add to this list?Who has been the most helpful to you? Least helpful? And why? What is one thing you do every day, without fail. (What is one thing you WISH you did every day, without fail.) Other than sleep, what do you spend the most time doing every day? What is your favorite EASY recipe that you can make without exhausting yourself? What are you reading right now? What is the best medical advice you ever got? The worst? (I will stop with my stream of consciousness now or I could be here all day!) :)

Tinu's Info & LinksTinu Abayomi-Paul-Author, creatorof #EverywhereAccessible Founder of @EveryAcess, Activist, Survivor, cancer Chronic Pain, and black woman.HASHTAGS TO LOOK FOR PEOPLE TO FOLLOW#DISABLEDBLACKTALK#DISABLEDPEOPLEFORBLACKLIVESRESOURCES HISTORY OF THE POLICE OFFICERS LINKSHOW THE U.S. GOT ITS POLICE FORCENATIONAL LAW ENFORCEMENT MUSEUM: SLAVE PATROLS: AN EARLY FORM OF AMERICAN POLICINGPEOPLE TO FOLLOW@OSOPEPATRISSE @OPALAYO @ALICIAGARZA @KAILEESCALES @THEKINGCENTER @EVERYACCESS @UNITEDWEDREAM@4WheelWorkOutWEBSITEShatewatch.orgBOOKS TO READ: Born A CrimeCoretta Scott King Book Award Winners: books for children and young adults31 Children's books to support conversations on race, racism and resistanceBlack Feminist Thought by Patricia Hill CollinsEloquent Rage: A Black Feminist Discovers Her Superpower by Dr. Brittney CooperHeavy: An American Memoir by Kiese LaymonHow To Be An Antiracist by Dr. Ibram X. KendiI Know Why the Caged Bird Sings by Maya AngelouJust Mercy by Bryan StevensonMe and White Supremacy by Layla F. SaadRaising Our Hands by Jenna ArnoldRedefining Realness by Janet Mock Sister Outsider by Audre LordeSo You Want to Talk About Race by Ijeoma OluoThe Bluest Eye by Toni MorrisonThe Fire Next Time by James BaldwinThe New Jim Crow: Mass Incarceration in the Age of Colorblindness by Michelle AlexanderAFFIRMATIVE ACTION: The Guidelines address what appears to be a conflict between the statutory prohibition against considering race, sex, and national origin in making employment decisions, and the need, often through affirmative action, to eliminate discrimination and to correct the effects of prior discrimination.  FIRST NATION MISSING GIRLS & LAWSFATHER OF GYNECOLOGYADVICE:BE CLEAR ASK WITH AN IDEAHOW TO 'USE AND SHAREMY PRIVILEGE TO LEVERAGE HELP'HOW DO WE GIVE PEOPLE THE RODCOMPANY 'ACTIVISM' - LATER, TREVOR NOAH NICKOLO DI ANCOLOR BLINDNESS: THE PROBLEMSHOW TO AMPLIFY: INCLUSION RIDERSWHAT CAN WE DO TO PUSH THE BLACK VOICE-CREATE A DAY THE 13 FOR SUPPORT OF BLACK ARTISTS, MAKERS, STORYTELLERS. ON THE 13 COMPANIES SHOULD TAKE THAT TIME TO LISTEN TO THEIR WORKERS ABOUT WHAT IS NEEDED N THEIR COMPANIES.USE YOUR LIBRARYLIST OF AUTHORS TO START WITHSUPPORT PROTESTS FROM BED:CONTACT LOCAL COMMUNITY ORGANIZERS SUPPLIES, PRESS AGENT, LEGAL HELP , HELP WITH ACCESS. NOTIFY PERSON , FOOD COORDINATE. HASHTAG HELP HOW CAN TECH WORKERS HELP?USE A DAY FOR BLACK MONEY TO BLACK ARTISTSDISABILITY ACCESS AND POLITICAL ACTIVISMSICK WHILE BLACK. GETTING MEDS.

Jordan Ray: Limitless Medical Blogs, Staying motivated during Covid New Chronic Illness Symptom Tracking App Business owner and disability Managing expectations when disabled Chronic illness and college Emotional Vulnerability and Writing Medical App

Website/Blog, Twitter, & Instagram Handledoctormarcia.comDisorder InfoWhat is your disorder? *undiagnosed autoimmune, small fiber neuropathyAt what age did your disorder become a daily issue? *26Who were you before your illness became debilitating? *someone that didn't plan out spoons or activities, someone that didn't need constant methods to manage pain & energy. What would you do if you were not dealing with your disorder and/or disability? *spend more time freely outside in the sun! photosensitivity in Florida is a bitch.What would you like people to know about your daily life? *I'm always sick and in pain despite how I look, how much I lift, how much I work.What would make living and moving in the world easier for you? *Doctor's that understood that black women do feel pain and that young people can be sick. I have been undiagnosed for 5 years, and only in the past year have I gotten the care I needed.Do you have any life hacks? *Juicing daily for digestion, salt tablets before workouts, weekly acupuncture for more energy, compression socks all the time, sunblock no matter what when I leave the houseWhat kind of support do you get from family or friends? *emotional support from a few friends through our Disabled Girls Who Lift community, they can related to my experienceHave 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? * ALWAYS. My last neuro appointment I was told to drink water, do exercise, and learn to get over it.How has your chronic illness affected your relationships? *I've grown apart from people who can't understand why I don't attend certain events (especially in COVID times), or related to my disability experience.Is there anything you are afraid to tell people in your life? *I am not afraid to disclose my issues, but usually I do not confide in anyone about stress/anxieties/feelings unless they have a disability (visible or not). I've found that people who can't relate can't hold a space for me, I don't want any thoughts & prayers or silly ideas, and I definitely can't stand pity. What is your best coping mechanism? *Yoga and lifting!What are you the most concerned about and the most hopeful for in the future? *I'm most concerned that my capital D diagnosis will show itself and be a real shit. I'm most hopeful that I can run a successful business from home and start a family within the next two years. Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.Disabled Girls Who Lift, Just Move Therapy.What makes you energized or enthusiastic? What drains you?Mentally anything that requires big brain work on a brain fog day is draining. Filling this form out on a bad day would be work. On a good day, it's fine. So, depends. Physically also depends. On a bad day, I'm on the couch and washing my hair is a mission. On a good day I can workout, take a walk, and cook dinner. the one constant drainer is UV rays, high UV index days are my kryptonite. Any favorite books or shows?I love short story books, finished up 'all the names we have for god' recently. Going to start Disability Visibility soon. As far as shows, Ozarks, Parks & Rec, Insecure, Dave, Rick & Morty.What is the hardest and/or best lesson your condition has taught you?Slow the fuck down and rest.What is the best purchase under $100 that helped your lifesalt tabletsAny questions you think we should add to this list?current topics related to anti-racism, black liberation, and COVID

Website/Blog, Twitter, & Instagram HandleTwitter: @CarrieALightleyhttps://www.carrieannlightley.com/Name *Carrie-Ann LightleyWhat is your disorder? *Cerebral PalsyAt what age did your disorder become a daily issue? *0Who were you before your illness became debilitating? *I've always been disabledWhat would you do if you were not dealing with your disorder and/or disability? *I wouldn't be me!What would you like people to know about your daily life? *I LOVE my life – wonky, uncooperative, wheelchair-using body and all – I wouldn’t be the person that I am without Cerebral Palsy, and I wouldn’t want to be anyone else.What would make living and moving in the world easier for you? *More detailed, accurate accessibility information for venues, transport and services.Do you have any life hacks? *Maternity jeans! I'm not (and not planning to be) pregnant but have been wearing maternity jeans for a while now and I'll never go back. Like many wheelchair users I have poor muscle tone in my stomach, so my tummy sticks out. Wearing 'normal' jeans when I'm sitting all day is really uncomfortable.What kind of support do you get from family or friends? *I live with my husband and he helps me with all the day to day life things I need assistance with - housework, cooking, driving. I'm also lucky to have a lot of supportive family and friends who step in when need be.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? *NoHow has your chronic illness affected your relationships? *I feel like being visibly disabled makes me an excellent judge of character. I can tell within minutes of meeting someone, whether they're my kind of people.Is there anything you are afraid to tell people in your life? *No, I try to be very open.What is your best coping mechanism? *Reading. It helps me to relax physically, allowing my body to recover, and mentally it gives me an escape.What are you the most concerned about and the most hopeful for in the future? *I'm both hopeful and concerned about traveling again.Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.I'd like to be able to promote my blogWhat makes you energized or enthusiastic? What drains you?Exercise and creativity energize me. Overworking drains me, but is a coping mechanism that I'm trying to let go of.Any favorite books or shows?Henry Fraser's Little Big Things and Poorna Bell's In Search of Silence are my favorite recent reads. Grey's Anatomy is my all-time favorite show!What is the hardest and/or best lesson your condition has taught you?Both the hardest and the best - resilience What is the best purchase under $100 that helped your lifeA laptop case/travel bag that hangs on the back of my wheelchair