Category: awareness

Awareness Calendar for December

Posted on by Grayson Schultz

blue background with white lines and black text: "Awareness Calendar for December" - and teal text: "Chronic Sex"

Month:

  • AIDS
  • Aplastic Anemia
  • Constipation Awareness
  • Drunk and Drugged Driving (3D) Prevention
  • Human Rights
  • Identity Theft
  • Seasonal Affective Disorder (SAD)

Day/week:

  • World AIDS Day (1)
  • Crohn’s and Colitis Awareness Week (1-7)
  • International Day for the Abolition of Slavery (2)
  • International Day of Persons with Disabilities (3)
  • National Handwashing Awareness Week (3-9)
  • National Influenza Vaccination Week (4-11)
  • International Volunteer Day (5)
  • Human Rights Day (10)
  • International Migrants Day (18)
  • U.N. Arabic Language Day (18)
  • National Homeless Persons’ Remembrance Day (21)

Giving Tuesday: Help Our Community

Posted on by Grayson Schultz

black background with green text "Giving Tuesday: Help Our Community" and white text "Chronic Sex" - both middle-aligned above a white hand, outlined in black, with a pink bracelet and a purple bracelet supporting/holding up the text

One of the things I’ve always envisioned this site being able to do is lifting up other people in our communities. For me, that means chronically amazing, trans/GNC, queer, sex-educatory, animal-loving people.

Since it’s Giving Tuesday, I want to highlight ways we can give back to our peoples, whoever they may be. While I’ve put people under a variety of sections, notice that intersecting identities don’t just limit most of us to one label.

Chronically Amazing

USA

My friend Kenzie defies words. She is all at once innovative and an old soul, spontaneous and planned out, supportive and sassy. There are a million reasons I’m glad she and I are friends. Unfortunately, she’s struggling a lot lately. While dealing with being a senior in college, she’s juggling an ever-growing list of serious chronic health conditions. The dual hit to the bank account of being a chronically ill college student is something that’s really hard to cope with. That’s where we come in! You can donate to her Amazon wishlist or contribute to her fundraiser that helps train her service dog (and giant love muffin) Ophie.

Britt is another chronically ill gal. Recently, she’s received a rare disease diagnosis and struggled with back-to-back hospital admissions. On top of that, she’s barely able to eat. You can help get her food and supplies through her Amazon wishlist.

Struggling with undiagnosed health issues is scary, especially when they land us in emergency multiple times. Kat, who is a freaking joy to know, is dealing with just that – struggling with a high ER bill on top of needing to see specialists. You can help offset the costs she’s been hit with on her GoFundMe.

Judy lives with a number of health conditions. Unfortunately, she has little help with day-to-day tasks, schooling, medications, and more. She’s looking to get a service dog, but they’re very expensive. Please visit her GoFundMe to learn more.

Annabel has been fighting breast cancer for over a year and recently had a second major surgery. Unfortunately, she’s not covered under the Family & Medical Leave Act (FMLA) and will be out of work for two months. You can help cover the costs of her surgery and expenses via GoFundMe.

Antonina is a hard-working Haitian immigrant with 4 children. She works as a nurse to provide for her kids, but this has left her with severe damage in her knees – to the point she needs a total knee replacement on each one. With the Temporary Protected Status of Haiti being ended before August 2019, it’s incredibly important to raise the money to get these surgeries as soon as possible to allow for the best possible outcomes. You can donate here.

Canada

Alex is a great reminder that healthcare isn’t better in other countries – yes, even Canada sucks when you’re chronically ill. They have been fighting to get an accurate diagnosis for ages. Unfortunately, that requires a series of very expensive tests that the Canadian health system won’t cover. You can donate to Alex’s GoFundMe or shoot them money via PayPal.

UK

Shona, who you might remember as the author of this piece, has an outdated wheelchair. Since she is able to walk (with a metric ton of pain), the National Health System in the UK won’t help her get a new one. Since she can’t work, either, funds are limited to get a new chair. Please consider donating to her GoFundMe.

Emma also lives in the UK where they are ill-equipped to handle her complex medical issues. On top of chronic Lyme Disease, she endures a number of harrowing symptoms that leave her bedbound 90% of the time. Her family is raising money to help get treatment underway as the NHS isn’t cutting it.

Representation

Dawn runs Spoonie Chat, a weekly Twitter chat held on Wednesdays at 8 pm Eastern that’s focused on living well will a variety of chronic illnesses. She’s currently working on crowdfunding her writing to help get more representation of illness out there.

Black and Brown Spoons is an online community started to help Black, Latinx, Asian, Middle Eastern, and Indigenous people with chronic illnesses get connected to information, resources, and support around healthcare and disability rights in the US. Honestly, most of us who are popular are pretty white and we don’t experience the same issues the same way. They’ve got a Teespring page set up with great gear you can grab while helping them further this awesome mission. They have a merch giveaway that ends today, too, until 6 pm Eastern today. Check out this Twitter thread for how to enter.

Jennifer Brea has made a lot of headlines recently. As the filmmaker behind Unrest, she is challenging providers to see and believe the reality of patients living with ME/CFS. The film premiered at Sundance this year and it’s gotten rave reviews (mine is coming soon!). If you want to help Jennifer and her organization raise more awareness of ME/CFS, please click here.

Trans/GNC

Gender-affirming surgery is a very extensive and expensive process. It can be scary to go through, even though it’s super helpful to have. Kai has been on testosterone for two years and is starting the process of getting bottom surgery. Between having to travel across the country – and stay for 6 weeks – for treatment, he is having a hard time paying the bills associated with preparing for surgery. Please visit Kai’s YouCaring page to help.

Ty is working to get top surgery. Right now, though, their insurance won’t cover the costs. Donating will help Ty with the costs of surgery and being out of work while healing. Their YouCaring page has more information.

Getting a new passport for trans folx can be incredibly expensive, but very worthwhile. You can help, though! An organization is helping to cover passport fees for trans peeps. Visit their YouCaring page to learn more.

Zaire is a black, trans, chronically-ill queer who has been struggling with ongoing homelessness for their entire life, on top of chronic illness, ongoing health struggles, and the daily violence of anti-blackness and transphobia moving through this white supremacist world. You can help them by donating through their YouCaring page.

Jacie is a runner and activist who fights hard for equality. Unfortunately, after coming out as trans in 2014, she was severely beaten. While she’s in a safer position right now, she is raising money for surgery to correct the damage done during the attack.

Queer

Bree is one of my favorite people. I can’t believe I get to be on a panel with her soon! (Go to Clexacon – you won’t regret it.) She’s a fellow queerdo, disabled, and just hella cool. She helps remind people all the time to practice self-care and is very open about mental health, which is so very needed. You can help her through her fun Amazon wishlist, her medical one, or on Patreon.

NC Queer TROUBLMakers (Trans Revolutionaries Organizing Under Black Lives Matter) is a statewide collective of queer and trans people of color in North Carolina. We began formally working together in August of 2015, coordinating Queer and Trans Black Lives Matter demonstrations at Pride events across the state. They need additional funding to help their members pay rent and cover basic living costs. Visit their GoFundMe page to learn more.

Sex Education

Ducky Doolittle is an amazing human being. She’s one of the reasons that I got into sex education work. Unfortunately, she has recently been diagnosed with uterine cancer and just went through surgery to kick cancer’s ass. If you can donate to help keep things afloat while she does her thing, click here to pop to her PayPal.

Sarah Brynn is one of my favorite sex educators. She’s had a lot of great things to share during the MeToo movement as a fellow survivor. She wants to help create more trauma-informed, feminist sex education. You can donate to her via Patreon or PayPal.

JoEllen Notte talks very openly about mental health and sex. She has given presentations and talks at many conferences on the subject and is working on writing a book. Check out her Patreon and support her amazing work.

Ever heard of the book Girl Sex 101? The author behind that, Allison, work on a lot – sex-ed videos, blogs, essays, art, fiction, etc. She has a Patreon set up to snag more funding and make her work more accessible.

Amy runs Coffee & Kink. In addition to sex education, she writes erotic fiction and helps people new to investigating sexuality navigate their new world. You can support her work on Patreon.

Artemisia FemmeCock writes reviews of sex toys and kink products. She works hard to bring in educational aspects, helping to demystify kink and sex toys. Please visit her Patreon to learn more.

Cheryl AKA Horny Geek Girl is a writer and sex blogger, too. She recently set up a Patreon in an effort to focus more on her passion – badass erotic writing.

Amy Jo Goddard and Julie Carlson are on a mission to improve pelvic exams, and they go on a quest to find out why patients have horror stories about gyn exams, what students are learning, and how to change our approach to gynecology to one of empowerment rather than dread and trauma. Check out their project, At Your Cervix.

Organizations

LGBT+ and Sex Ed

The Native Youth Sexual Health Network (NYSHN) is an organization by and for Indigenous youth that works across issues of sexual and reproductive health, rights and justice throughout the United States and Canada.

In the quaint town of Pawtucket, Rhode Island sits a building with a giant walk-through vulva. The Center for Sexual Pleasure & Health works tirelessly to provide education to everyone, including continuing education for people like myself.

Heart Women & Girls is one of my favorite organizations. They focus on sexual health and education for femmes within Muslim spaces. Providing culturally-sensitive health information is something that is vastly overlooked and badly needed – and Heart does that. Donate and help them on their path to fix the world.

The Matthew Shepard Foundation came about after Matt’s brutal murder in 1998. As a baby queer at the time, I’ve written about how Matt’s story continues to push me to fight for all of us. The Foundation continues to push for better laws against hate crimes, especially for the LGBT+ community. You can donate to them here.

TSER – Trans Student Educational Resources – is a youth-led organization dedicated to transforming the educational environment for trans and gender nonconforming students through advocacy and empowerment. In addition to our focus on creating a more trans-friendly education system, our mission is to educate the public and teach trans activists how to be effective organizers. Please consider donating to help further their mission.

Founded in 2003 by trans activists, the National Center for Transgender Equality provides a powerful transgender advocacy presence in Washington, DC. After the many setbacks our community has seen this year – and the ones we fear are coming – it’s important to continue supporting their work and affirming our support for them.

The Sylvia Rivera Law Project (SRLP) works to guarantee that all people are free to self-determine their gender identity and expression, regardless of income or race, and without facing harassment, discrimination, or violence. It’s named after one of the trans pioneers of the LGBT rights movement, Sylvia Rivera. Please consider donating to them today.

Health

The International Pain Foundation is a great organization. They work hard to help raise awareness about various pain-causing conditions as well as providing resources and help for patients.

RA Guy has been a staple in patient communities for ages. Recently, he started his own foundation that focuses on providing education, support, and connection for arthritis patients.

The Autoinflammatory Alliance is a nonprofit organization dedicated to helping those with autoinflammatory diseases, also known as periodic fever syndromes… AKA part of what I deal with (and hate) daily.

NORD – the National Organization for Rare Diseases – works with patients, providers, researchers, pharma, and more to help raise awareness and money for the many rare diseases out there (some of which aren’t even on their list). You can donate to help further their cause.

Selfish Time

It’d be hard to write this out and not include my stuff. I’m semi-reluctantly posting links here that will help me to continue producing awesome content, going to conferences, and developing stuff to help all of us.

You can donate via Patreon, PayPal, or Ko-Fi. Additionally, you can snag CS gear on Zazzle, donate to ORCHIDS, or purchase something from my Amazon Wishlist. You can also shop using one of my affiliates:

Awareness Calendar for November

Posted on by Grayson Schultz

photo against animated leaves with yellow-orange text: "Awareness Calendar for November"

Month:

  • Adoption
  • Alzheimer’s Disease
  • Bladder Health
  • COPD
  • CRPS
  • Diabetes
  • Diabetic Eye Disease
  • Epilepsy
  • Family Caregivers
  • Gluten-Free Diet
  • Healthy Skin
  • Hospice & Palliative Care
  • Impotency
  • Lung Cancer
  • Manatees!
  • Mouth Cancer
  • Movember
  • Native American Heritage Month
  • Pancreatic Cancer
  • Prematurity
  • Pulmonary Hypertension
  • Stomach Cancer

Day/week:

  • International Lennox-Gastaut Syndrome Awareness Day (1)
  • National Stress Awareness Day (4)
  • National Diabetes Education Week (5-11)
  • Patient Blood Management Awareness Week (6-10)
  • National Canine Lymphoma Awareness Day (7)
  • Intersex Day of Remembrance (8)
  • World KC (keratoconus) Day (10)
  • National Hunger and Homelessness Awareness Week (11-19)
  • World Pneumonia Day (12)
  • Mouth Cancer Awareness Week (12-18)
  • World Diabetes Day (14)
  • Global Antibiotic Awareness Week (14-20)
  • World Prematurity Day (17)
  • World Pancreatic Cancer Day (17)
  • Restorative Justice Week (19-26)
  • International Survivors of Suicide Day (19)
  • Transgender Day of Remembrance (20)
  • GERD Awareness Week (23-29)
  • National Day of Mourning (23)
  • Unthanksgiving Day (23)
  • National Day of Listening (23)
  • National Espresso Day (23)
  • Native American Heritage Day (24)
  • International Day for the Elimination of Violence Against Women (25)
  • International Day of Solidarity with the Palestinian People (29)
  • International Self-Harm Awareness Day (30)

October 12th is World Arthritis Day

Posted on by Grayson Schultz

B&W photo of kirsten with short dark hair looking up; a teal translucent overlay with white text: "October 12th is World arthritis Day" and "Chronic Sex"

TW death and dying, mentions of abuse and neglect

Hooray, it’s World Arthritis Day?

Arthritis is something that’s been big in the news, even if you haven’t realized it. Lady Gaga and Selena Gomez both live with types of arthritis. Confused? Read on!

Basics on Arthritis

Arthritis isn’t just for old people, even though that’s who we usually associate with that word. What arthritis means is bone (arth) swelling (itis). Diseases that feature this symptom commonly, whether as the main symptom or just a possible one, often get listed under this umbrella. Some of the over 100 conditions that are under this umbrella include Rheumatoid Arthritis, Lupus, Fibromyalgia, Ankylosing Spondylitis, Gout, Osteoarthritis, Lyme Disease, Scleroderma, and Tendonitis. Sometimes, this list includes Inflammatory Bowel Diseases like Crohn’s Disease.

Most of these are invisible diseases, meaning you can’t tell someone is ill. While there are many people who utilize assistive devices like wheelchairs, there are plenty who don’t. That may be due to a lack of access or funding, physical accessibility of their surroundings, lack of a concrete diagnosis, concerns on displaying as ill/disabled, not needing them, or a number of other things.

These conditions affect 1 in 4 people in the European Union and 1 in 5 adults in the United States. Here in the US, it’s one of the leading causes of disability. More than 200 billion Euros and 156 billion US dollars are lost each year due to these diseases. That includes lost work time as well as medical bills. That’s a combined total of nearly 400 billion US dollars or 331 billion Euros.

Yikes!

Juvenile Arthritis (JA)

The ACR says that 1 in 1,000 American children develop some kind of ‘chronic arthritis.’ The most commonly cited statistic is that 300,000 children have a type of JA, though it’s debated whether or not that is limited to just the three main types of JIA. These are Systemic, Oligoarticular (up to four joints), and Polyarticular (five or more joints).

I tend to think this number is more limited to the main JIA types, leaving out juvenile fibromyalgia and other conditions. Most organizations characterize these other kinds as ‘Pediatric Rheumatic Diseases.’

Some types of JA are short-lasting, like Kawasaki Disease and Fifth Disease. Others, like the JIAs and Juvenile Lupus, are life-long. Remission may be possible. Since that often depends on how quickly someone is diagnosed and treated, it’s not always achievable for many of us.

“Wait, us?” you say?

Yeah, I have SJIA. And it sucks.

photo of lil kirsten laying on a couch as a child; she has on a green tank and some character underwear
My last ‘well’ picture from September 1993. I got sick with Systemic Juvenile Idiopathic Arthritis that November.

Systemic JIA (SJIA)

Systemic JIA (or Still’s Disease) hits roughly 10% of the above statistic. A salmon pink rash accompanies this and is not usually itchy. (If I recall correctly from my copy of A Primer on Rheumatic Diseases, only 5% of us ‘enjoy’ the itchy version.) It can look like welts, small circles, or hives. This rash usually comes along with the fevers SJIA brings. It can also be triggered by stress, high emotion, and rubbing or scratching (AKA the Koebner Phenomenon).

kirsten with splotchy sjia rash on her chest

Fevers can peak up to several times a day, but generally happen at least once a day. While it affects joints, SJIA also affects organs. Aside from the skin, it likes to attack organs heavily involved in the immune system like the spleen.

It can also cause Macrophage Activation Syndrome (MAS) which can be fatal.

Death

The SJIA communities I know have lost nearly a dozen children and adults over the last few years due to MAS or other complications related to the disease. In 2012, I actually lost my best friend at the time to complications from an infection related to her SJIA.

Even other kinds of arthritis can be fatal.

Living with one of these conditions can decrease your life expectancy by up to 15 years. Each patient handles these kinds of issues their own way but I, for one, am scared as shit. I try not to show it that much, but I have ‘existential crisis’ days where I’m constantly having panic attacks over death and dying.

It’s fucking scary.

Day-to-day Life

Like anyone, I have good days and bad days. After Monday’s PT, I found myself incredibly sore. I’m still dealing with swollen knees from it and it’s Thursday. I have canes, but they try to murder my hands and I can’t do without typing. It’s ‘easier’ to just deal with the knee crap than work to find something better.

When you have one type of arthritis, you can wind up with others. My kneecaps grind and hurt all the time, part of patellofemoral arthralgia. I suspect I have tendonitis in a few spots and have dealt with bursitis a few times, too. Fibromyalgia kicks my ass often. I struggle with holding hands, playing with the piggies, and even wearing clothes. That doesn’t even get to things around the house or work stuff I do. It sure as hell doesn’t address my intimate life, either.

a photo of my daily pills (four gummies, three capsules, five pills, a nasal spray vial, and a syringe) against the cover of a book called 'Chronic Illness: Impact and Intervention' (7th edition)
Meds as of June; sadly this pile has grown

I take more naps than I would like. I have to rely on medications to function. If I’m late by even ten minutes, my body screams. I have a million things to try to lower my pain – lotions, migraine glasses, copious amounts of caffeine, CBD oil, high-tech gadgets, etc. Still, I wind up struggling through at least half my week.

Fatigue, brain fog, and chronic pain all enjoy working together to harm us. They bring depression and anxiety to the party, too. My childhood adds just a dash of PTSD for good measure. Who am I kidding? It’s more than that. Hell, I can barely sleep in my bed right now because of pain and nightmares. It’s really, um, unpleasant? Uncool? Shittastic?

Still, I’ve been on a biologic medication that keep my SJIA steadily ‘okay’ – and has since the summer of 2015. It’s the longest I’ve been on one biologic. Seven different meds have failed me in eight years. Kineret keeps my labs looking… well, the best I’ve ever seen them in my entire life. I’m very lucky to be sitting here today, especially with 14 years of neglect, without real treatment.

I very easily could be dead. I maybe even should be, statistically.

Living with Arthritis is Still Living

Despite being in unrelenting pain, I know that I’m not alone. There are so many of us in similar situations, dealing with undertreated pain. We go through life looking for resources to help us live as well as possible, even creating them if we have to.

Shit, that’s why I write about what I deal with, right?

Plus, I’ve gotten to do some pretty cool things and meet some of my heroes. So that’s neat.

12 small square photos surround a larger blue square photo with light blue and white text: "I am an American with a pre-existing condition #healthhasnoparty"; starting in upper left and moving clockwise - photo of Kirsten with former MTV VJ Karen Duffy; photo of Kirsten's pill bottle tops with a necklace featuring the Japanese character for strong; photo of Kirsten up close with very red right eye; photo of Kirsten with her Rep. Mark Pocan; drawing of Kirsten from Healthline using an inhaler; distorted selfie of Kirsten in front of muscular and skeletal posters in an exam room; a photo of Kirsten and Kenzie (Life According to Kenz); selfie of Kirsten with a bear snapchat filter that adds in a cute medical facemask; photo of Kirsten using a ventilator; selfie of Kirsten wearing a purple shirt that says "Disability is a natural part of the human experience" from Ollibean; selfie of Kirsten kissing her Biofreeze roll-on; photo of Kirsten's left leg elevated with various kinds of KT Tape and wraps on

At the end of the day (usually), I’m still alive. I’m still living the best life that I can while I can. In the end, that’s all we can do, right? Live well, help others, and push for better changes in our world.

Hopefully, snagging some information on arthritis can help y’all be mindful of what others may be facing. At the very least, I hope I undid some of the stigmas out there.

MIAW: Basic Mental Health Facts

Posted on by Grayson Schultz

B&W photo of a dude looking out a window; on right, a white text box with blue text "NIAW" and under this is white text "Basic Mental Health Facts" and at bottom is a white text box with blue text "Chronic Sex"

This week is Mental Illness Awareness Week. Today, I wanted to focus on sharing mental health facts.

While 26% American adults live with a mental illness, one in twenty-five has a serious mental illness. A serious mental illness is one that “results in serious functional impairment, which substantially interferes with or limits one or more major life activities.” This includes conditions like Schizophrenia, Post-Traumatic Stress (PTSD), and Bipolar Depression.

Just under 20% of American adults live with an anxiety disorder, PTSD, or phobias. This is the most common category of mental illness and can be especially common for people with complex medical histories.

Depression and anxiety are common in people living with other chronic illnesses or disabilities. This can lead to more severe symptoms in both mental and physical illnesses. Depression can also lead to higher risks of heart attack and stroke. Risk factors for both mental and non-mental chronic illness include Adverse Childhood Experiences (ACEs), poverty, isolation, lack of social interaction/support, racism, lack of access to fresh food and healthcare, and more.

Around 70% of adults with mental illness also have a non-mental chronic illness. Living with both lead to a 4x chance that you’ll die early.

Many patients with mental health issues have their medical issues taken less seriously. Sometimes this is more an issue of not having great access to care or insurance. Silos that separate mental care from medical care also add to the problem.

Having a mental illness makes you about twice as likely to be a victim of a violent crime than a perp.

In 2008, mental illness was found to be the third largest contributor to homelessness. Nearly half of all homeless people have a mental illness, and 25% have a serious mental illness.

Seventy-five percent of mental illnesses start by the time you’re in your mid-twenties.

Over half of adults who have substance use disorder also have an underlying mental health issue.

People with multiple marginalizations (i.e., people of color, women, people living in poverty, etc) are less likely to receive a concrete diagnosis or treatment. With that said, around 20% of white and black adults have a mental illness. 16% of Latinx adults, 14% of Asian adults, and nearly 30% of Native Americans or Alaskan natives struggle as well.

People within the LGBTQQIA2+ community are more than twice as likely to have a mental illness. They are 2-3 times more likely to attempt suicide in their youth. They’re also more likely to experience discrimination when seeking healthcare, especially for mental illnesses.

Some of the many barriers encountered when seeking a diagnosis or care include:

  • Access, including lack of insurance coverage for mental health
  • Timing (i.e., Can you see a provider outside of work hours?)
  • Poverty
  • Transportation
  • Quality of care
  • Stigma
  • Racism
  • Homomisia, Transmisia, Cisheterosexism, and additional discrimination
  • Language barriers

Facts from NAMI, Mental Health By The Numbers, Multicultural Facts, NIAMH, CDC, SAMHSA.

Awareness Calendar for October

Posted on by Grayson Schultz

green lines around outline of white photo with orange pumpkin: "Awareness Calendar for October - Chronic Sex"

Month:

  • ADHD
  • AIDS (December is more popularized as AIDS awareness month, but October is a secondary month)
  • Breast Cancer
  • Dental Hygiene
  • Depression Education and Awareness
  • Disability Employment
  • Domestic Violence
  • Down Syndrome
  • Dwarfism
  • Dysautonomia
  • Dyslexia
  • Emotional Wellness
  • Ergonomics
  • Eye Injury
  • Gaucher Disease
  • Health Literacy
  • Healthy Lungs
  • Home Eye Safety
  • LGBT History
  • Liver
  • Long-Term Care Planning
  • Menopause
  • Niemann-Pick Disease
  • Organize Your Medical Information
  • Patient-Centered Care
  • Physical Therapy
  • Pregnancy and Infant Loss
  • Rett Syndrome
  • SIDS
  • Spina Bifida
  • Talk About Your Medicines

Day/week:

  • Mental Illness Awareness Week (1-7)
  • World Animal Day (4)
  • World Cerebral Palsy Day (6)
  • World Mental Health Day (10)
  • National Coming Out Day (11)
  • Bone and Joint Health National Action Week (12-20)
  • World Thrombosis Day (13)
  • Metastatic Breast Cancer Awareness Day (13)
  • National Dessert Day (14)
  • Pregnancy and Infant Loss Awareness Day (15)
  • National Latino HIV/AIDS Awareness Day (15)
  • Global Handwashing Day (15)
  • National White Cane Safety Day (15)
  • International Infection Prevention Week (15-21)
  • National Healthcare Quality Week (17-22)
  • World Pediatric Bone and Joint Day (19)
  • Asexual Awareness Week (19-25)
  • World Osteoporosis Day (20)
  • National Pumpkin Cheesecake Day (21)
  • International Stuttering Awareness Day (22)
  • Respiratory Care Week (22-28)
  • Lung Health Day (25)
  • Intersex Awareness Day (26)
  • World Stroke Day (29)
  • World Psoriasis Day (29)

CHIP Needs Our Help

Posted on by Grayson Schultz

white background with a stethoscope featuring a red heart; black text at top middle "CHIP Needs Our Help" and at bottom middle "Not Standing Still's Disease"

The Children’s Health Insurance Program (CHIP) was passed in August 1997, taking effect the next month. What this program does is give states funds (that they must match) that help to cover children living in low-income households that don’t qualify for Medicaid. It’s undergone expansion, adding protection for a couple million more children thanks to President Obama.

Today, CHIP covers approximately 9 million children from low-income families. These children are at risk of losing their healthcare. See, funding for CHIP ends at the end of this month – so, Saturday. The Senate has refused to discuss renewing funding for CHIP since early this year, focusing on repeal-and-replace efforts instead. Without immediate renewal, over a million of these children would lose insurance and the remaining 8 million would see reduced benefits.

The Senate Finance Committee, led by Ron Wyden and Orrin Hatch, have introduced a bill – S 1827 – that extends funding for another five years. However, the Senate has failed to act on this.

Do what you can today to reach out to your Senators and ask them to discuss this bill NOW.

  • Contact your Senators
  • Protest and picket (if able)
  • Get loud on social media
    • Use tags like #saveCHIP
  • Send letters to the editors or reach out to your local news to explain your concerns

Let’s come together to ensure that these children aren’t left behind.

HR 36 and HR 620: Two Bills We Must Fight

Posted on by Grayson Schultz

Photo of the Supreme Court building against a blue sky - a black text box on the lower half with white text: "HR 36 and HR 620: Two Bills We Must Fight - chronic sex"

After the good news that the Graham-Cassidy plan wasn’t going to be voted on, you might’ve thought we’d get a break.

Sadly, there are two bills right now that we need to fight.

HR 36: Pain-Capable Unborn Child Protection Act

In 2015, the House approved this but the Senate did not. Unfortunately, Trent Franks in Arizona decided it was time to try again. It’s unknown right now if the Senate would approve this once it passes in the House, but Cheeto Voldemort has vowed to sign it if so.

What this bill does is make it illegal to perform or attempt to perform an abortion if the fetus is 20 weeks or older. This is targeted toward abortion performers (i.e., doctors, etc), and those breaking this federal law would be subject to fines and/or jail time.

While people say this does not affect the person seeking the abortion, I doubt that is true. There are exceptions for rape, incest, and if the procedure is deemed medically necessary.

You can read the bill here. Note that the bill currently has support from representatives in just about every single state.

HR 620: ADA Education Reform Act of 2017

Contrary to what the title might suggest, HR 620 negatively impacts the ability of the Americans with Disabilities Act (ADA) to work. The ADA, passed 27 years ago, was supposed to secure certain rights for those of us with disabilities. Instead, there is a lack of enforcement of the ADA, with businesses and schools getting away with not making necessary changes.
This bill would only make that worse. It would make it nearly impossible for many disabled people to make a formal complaint about ADA violations. The complaint would first have to be in writing with very specific language. If (or, really, when) the business/whatever fails to respond and/or update things, it’s then on the disabled person to gather data to send in.
There’s no reason for this. All this is doing is making it harder for us to report businesses that are not compliant with a nearly 30-year old law.
Check to see if your representatives are currently co-sponsoring this. See also the following articles:

What to do

Like with Graham-Cassidy, we’re going to have to get loud over these bills.

  • Contact your Senators
    • Call them at 844-859-3118
    • Use ResistBot
    • Talk to them on social media
    • Email
    • Fax
    • While you’re at it, tell them it’s unfair and illegal to strip the ACA’s funding
  • Protest and picket (if able)
  • Get loud on social media
    • Use tags like #savetheADA
  • Send letters to the editors or reach out to your local news to explain your concerns
You can also take a moment to contact members of the House Judiciary Committee as listed below:
  • Chairman Bob Goodlatte (VA-06)
  • Rep. Jim Sensenbrenner, Jr. (WI-05)
  • Rep. Lamar Smith (TX-21)
  • Rep. Steve Chabot (OH-01)
  • Rep. Darrell Issa (CA-49)
  • Rep. Steve King (IA-04)
  • Rep. Trent Franks (AZ-08)
  • Rep. Louie Gohmert (TX-01)
  • Rep. Jim Jordan (OH-04)
  • Rep. Ted Poe (TX-02)
  • Rep. Tom Marino (PA-10)
  • Rep. Trey Gowdy (SC-04)
  • Rep. Raúl Labrador (ID-01)
  • Rep. Blake Farenthold (TX-27)
  • Rep. Doug Collins (GA-09)
  • Rep. Ron DeSantis (FL-06)
  • Rep. Ken Buck (CO-04)
  • Rep. John Ratcliffe (TX-04)
  • Rep. Martha Roby (AL-02)
  • Rep. Matt Gaetz (FL-01)
  • Rep. Mike Johnson (LA-04)
  • Rep. Andy Biggs (AZ-05)
  • Rep. John Rutherford (FL-04)
  • Rep. Karen Handel (GA-06)
  • Ranking Member John Conyers, Jr. (MI-13)
  • Rep. Jerry Nadler (NY-10)
  • Rep. Zoe Lofgren (CA-19)
  • Rep. Sheila Jackson Lee (TX-18)
  • Rep. Steve Cohen (TN-09)
  • Rep. Hank Johnson, Jr. (GA-04)
  • Rep. Ted Deutch (FL-22)
  • Rep. Luis Gutierrez (IL-04)
  • Rep. Karen Bass (CA-37)
  • Rep. Cedric Richmond (LA-02)
  • Rep. Hakeem Jeffries (NY-08)
  • Rep. David Cicilline (RI-01)
  • Rep. Eric Swalwell (CA-15)
  • Rep. Ted Lieu (CA-33)
  • Rep. Jamie Raskin (MD-08)
  • Rep. Pramila Jayapal (WA-07)
  • Rep. Brad Schneider (IL-10)

Ways to Contribute to Wildfire Relief

Posted on by Grayson Schultz

a photo of two firefighters dressed up and using a fire hose to combat a large wildfire; a white box surrounds white text "Ways to Contribute to Wildfire Relief"

With hurricanes and earthquakes hitting parts of our world, many aren’t aware of the dangerous wildfires in the US. Currently, fires are ravaging Washington, Oregon, California, Idaho, Montana, and Colorado. You can get daily updates here.

I grew up in Oregon and have family all along the west coast and northwest. It’s scary to see what these fires are doing, especially with the lack of rain. Thankfully, it’s rained a bit over the last week or so. The fires rage on, though.

If you can help, please check out the following organizations and crowdfunding projects:

There are additionally fires in Canada that affected First Nations tribes like Ashcroft earlier this year.

911! Fight Against the Cassidy-Graham Plan

Posted on by Grayson Schultz

white background with red vertical lines on either side; black text "911!" and red text "Fight Against the Cassidy-Graham Plan" and black text "#savetheACA #ACAsavedmylife Not Standing Still's Disease"

I posted this earlier in the week on my other site, Not Standing Still’s Disease, but wanted to repost here.

Update: public comments are due by 9 AM Eastern Time Monday morning (25th). You can email your comments to GCHcomments@finance.senate.gov or visit willtrumpcarehurtme.com‘s email assist.

Not only do we have to fight to protect the ADA, we still have to fight for healthcare.

I’m starting to worry that this is going to be every fucking quarter, but I digress.

You can read the 141-paged plan (referred to as Cassidy-Graham, Graham-Cassidy, Graham-Cassidy-Heller, and Graham-Cassidy-Heller-Johnson) but here’s the scoop on what this bill would do:

  • Eliminates subsidies for private insurance
  • Ends Medicaid expansion
  • Caps Medicaid money, leaving millions of people uninsured
  • Allows waivers to charge sick/ill/disabled patients more (fucking high-risk pools)
  • Stops requirements on ACA-required benefits
  • Repeals tax credits for middle class
  • Puts up barriers to health insurance for low-income people (and removes subsidies)

Cassidy and others have said this block grant program would simply give money to the states for them to decide. It’s essentially shifting ACA-type stuff to states rights type stuff, acting as though states could then keep ACA programs in place. Without the support at the federal level – and with a large number of anti-ACA governors – this won’t be the case.

One scary thing to note is that the Congressional Budget Office won’t have enough time to evaluate the bill before September 30th. This is the last day this bill could be passed with 50 votes (or 51 with VPence). Otherwise, filibuster could prevent the bill from being passed.

Graham-Cassidy-Heller (ACA Repeal) Simple Summary - Repeal and Replace is back. Take it seriously. Here's what it does: *Estimated 32 million will lose coverage within 10 years (not yet scored) *Ends Medicaid expansion. Health care for 11 million low-income adults. *Ends all subsidies for the exchange, replaced by a smaller and declining "block grant" *Block grant doesn't have to be spent on same population *Cuts coverage for low income seniors, children and people w disabilities by 7% by 2026 with a "per capita cap" (Yes, that's right -- a block grant AND a Lee capita cap) *Ends Federal protections on pre-existing conditions, life time caps and essential benefits. 50% of states expected to do so. *Ends all cost sharing payments to low income Americans *Ends all funding for coverage by 2026; 100% afterwards *Averages would be dramatically different: 20 states estimated to lose 35-60% of funding to move money to rural, red states *CBO has not estimated impact on premiums, but likely 20% spike next year *Would likely be presented to the House as "take it or leave it" if passes Senate *Provide no funding for recessions, natural disasters, public health emergencies, or price spikes *Targets women's health/family planning *Uses the same "50 votes" only partisan technique to pass; upends all bipartisan progress of the last two weeks - Source: Centers for Budget and Policy, prior estimates
Source: Andy Slavitt’s Twitter; see alt-text for description

This is a more radical version of repeal-and-replace efforts so far.

I’m tired of fighting, so I’m sure you are, too. If we don’t fight this one, though, we lose any progress we’ve made up to now.

What to do now:

  • Contact your Senators (especially if you live in South Carolina, Louisiana, Nevada, or Wisconsin)
  • Protest and picket (if able)
  • Get loud on social media
  • Send letters to the editors or reach out to your local news to explain your concerns

Some organizations opposed to this bill:

  • AARP
  • Adult Congenital Heart Association
  • ALS Association
  • Alzheimer’s Association
  • America’s Essential Hospitals
  • America’s Health Insurance Plans
  • American Academy of Family Physicians
  • American Academy of Pediatrics
  • American Cancer Society Action Network
  • American College of Physicians
  • American Congress of Obstetricians and Gynecologists (ACOG)
  • American Diabetes Association
  • American Foundation for the Blind
  • American Heart Association
  • American Hospital Association
  • American Lung Association
  • American Medical Association
  • American Nurses Association
  • American Osteopathic Association
  • American Psychiatric Association
  • American Psychological Association
  • American Speech-Language-Hearing Association
  • Amputee Coalition
  • Arthritis Foundation
  • Association of American Medical Colleges
  • Autistic Self-Advocacy Network
  • Blue Cross Blue Shield Association
  • Center for Medicare Advocacy
  • Children’s Hospital Association
  • COPD Foundation
  • Cystic Fibrosis Foundation
  • Family Voices
  • Federation of American Hospitals
  • Infectious Diseases Society of America
  • JDRF
  • Los Angeles LGBT Center
  • Lutheran Services America
  • March of Dimes
  • Nationa Association of Medicaid Directors
  • National Health Council
  • National Institute for Reproductive Health
  • National Multiple Sclerosis Society
  • National Organization for Rare Diseases
  • Planned Parenthood
  • Public Health Institute
  • Robert Wood Johnson Foundation
  • Volunteers of America
  • WomenHeart

Further reading:

Updated Sept 24