Q: What inspired you to create the Woosah Warrior book? A: As an artist living with epilepsy, brain fog, trouble concentrating and mood fluctuations have always made it difficult for me to keep up with other artists. Anxiety and overthinking often get the best of me, and I find it a struggle to finish personal creative projects that aren’t linked to my professional clients. In an effort to be creative without feeling overwhelmed, I turned to coloring books as a way to feed my creativity, ease anxiety and rest. I tried so many types of coloring books, but I never felt that they helped to accomplish my goals. The books were either too child-like and over-simplified or marketed to adults and contained extremely detailed illustrations. I found myself bored by the children’s coloring books and overwhelmed by the adult coloring books. (Brain fog is no joke, and sometimes the simplest task can feel like too much.) In an effort to appease my wants and create something for the chronic illness community, I decided to create Woosah Warrior, which combines coloring pages with journaling questions to encourage you to dive a little deeper. I found while coloring children’s books, my mind would wander off; the journal pages provide gentle nudges to bring you back to the present. Q: Can you tell me a little about the process you went through in creating the book? A: This is my first dive into creating a book, so it was a bit of a bumpy road to get to the finished product. Procrastination due to fear of failure was an overarching theme throughout the process, but I did my best to work through it. I started by coming up with empowering messages for each coloring page and tweaking as needed. Then, I thought about what type of graphics I wanted to create for each coloring page, and went through a brainstorming process for each page – deciding which style and graphics to move forward with before continuing on to create the journal pages. The journal pages were the easiest part for me to create because they correspond to the adjacent. The messages of empowerment set the tone and flow of my creation process, while keeping me inspired to finish the book. Q: How has your experience with epilepsy shaped your art? A: Epilepsy has shaped my art in a few ways. The first being that I’m more cautious during my design process, meaning I do not include flashing imagery or lights that may trigger photosensitive seizures in some people with epilepsy. Secondly, I began creating clothing and accessory designs for epilepsy warriors, which was never even a thought prior to becoming an advocate for the epilepsy community.
Q: What's next? Do you have any big projects planned for the future?
A: I’m actually considering a break! I began studying Herbalism this year and would like to take some time to focus on school and for some much needed rest and reflection. The past few years have been a bit of a whirlwind. I felt like I gave so much of myself away without recouping, and I’ve been facing some neuromuscular challenges. I think it’s time to focus on my health and wellness and take a step away from it all. I still intend to release a book sharing my epilepsy story, but I don’t currently have a launch date in mind.
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Last week, Ohio Senate Bill 26 was signed into law. As a result, Ohioans will no longer be charged sales tax on tampons and pads beginning in April 2020. While I don’t subscribe to the modern feminist movement (some would call me a full-blown anti-feminist), I was thrilled to see this ridiculous tax finally eliminated. Yes, this law affects women, but it’s about more than that. It’s about giving people access to basic needs, including health and hygiene necessities. Ohio is the 16th state to end the tax on period products, and advocates are pushing for more states to follow their example. The argument against the so-called “pink tax” seems pretty straightforward. Even products like Viagra and Rogaine – which are not medical necessities – aren’t taxed, and the classification of pads and tampons as “luxury” items seems completely absurd. After all, there’s nothing luxurious about uncontrollable bleeding and pain. Besides the obvious need to reclassify feminine hygiene products as necessities, activists and lawmakers are finally beginning to realize the significant impact of “period poverty” on women and girls in the US. It’s the national epidemic no one’s talking about. In fact, one in five teens has struggled to obtain period products or was unable to afford them at all. The result? School and work absence, as well as an increased risk of infection and toxic shock syndrome. To make matters worse, programs like WIC, SNAP and food stamps don’t cover the cost of period products. Many advocates are working to get pads and tampons into public restrooms (just like toilet paper is expected to be provided), especially in schools. Illinois, for example, passed the Learn With Dignity Act in 2017, which requires pads and tampons to be provided in all schools serving students in grades 6-12. New York City also provides free period products in public schools, prisons and homeless shelters. Many people – mostly women – are finally speaking up about this lack of access and highlighting the disparity between various socioeconomic groups and minorities (access is an even bigger issue on Indian reservations, for example). But I have yet to hear any arguments concerning the pink tax’s impact on people living with conditions like endometriosis, adenomyosis, fibroids or bleeding disorders. It’s estimated that the average woman spends somewhere between $150 and $300 on period products each year. In addition to the medical bills, cost of treatment and other expenses involved, women with these conditions can wind up spending a lot more on these basic necessities. Because the details of our periods aren’t something we like to talk about, it’s not surprising that the problems women with chronic conditions face in accessing basic health needs are often overlooked. I think men, and even many women, don’t fully understand the struggles that someone with a condition like endometriosis can face due simply to heavy blood loss. No, it’s not nice to talk about. But until someone does, we won’t get any closer to a solution. In addition to symptoms like pain, fatigue and fertility issues, uncontrolled endometriosis can lead to blood loss so heavy that some women need transfusions. Even in less severe cases, the bleeding alone can lead to: • School and work absence • Increased cost of pads, tampons or other products • Anemia • Sleep problems • Inability to perform basic daily activities or exercise A woman with a condition like endometriosis could easily spend twice or even three times as much on period products as an average person. And that means – you guessed it – the government collects two to three times the amount of sales tax on period products from these women. While a six percent tax may seem like a drop in the bucket, it’s one more expense for people who are already facing obstacles that can make it difficult to work, attend school or live a normal life. The elimination of the pink tax in Ohio is a step in the right direction. Advocates are working to pass similar laws in other states, and nonprofit organizations are finally beginning to recognize the need for pads and tampons in schools, shelters and other public spaces. While this is an issue affecting many women, it undoubtedly hits women with certain chronic conditions harder. It’s time we recognize this disparity and start speaking up. Sources
https://www.dispatch.com/news/20191109/pink-tax-to-end-in-ohio-though-advocacy-far-from-over https://www.cnn.com/2019/10/21/perspectives/period-poverty-menstrual-products/index.html https://thehill.com/changing-america/respect/poverty/469393-period-poverty-is-a-serious-problem https://www.limaohio.com/news/379263/heidi-stevens-work-to-end-period-poverty-now https://www.usatoday.com/story/money/business/2017/03/24/feminine-hygiene-newest-consumer-battlefield/99532850/ October 21-25 is National Health Education Week. Learn more here. Since being diagnosed with multiple chronic illnesses, I’ve had to learn a lot about my own body and how to take care of it. Which got me thinking; why didn’t I learn any of this in my middle school or high school health classes? Of course, I know things have changed since I graduated from high school, but I was curious what exactly is being taught in health classes these days. So I did a little digging and found the curriculum requirements for health education in the state of Ohio. And guess what? It’s even worse than I thought. While each district is responsible for creating the curriculum that will be taught in its schools, the state of Ohio mandates that the following topics be covered in grades 9-12:
That’s it. Any instruction beyond these topics is at the discretion of the districts and teachers who are responsible for educating our kids about their bodies and how to take care of them. It’s no wonder so many of us are ill-equipped to handle diagnoses as young adults. And it’s no surprise that we’re turning to online forums and asking Google for answers about our health. Teenagers are graduating high school fully aware of the dangers of drugs and unprotected sex, but they have no idea how to talk to their doctor or choose the right insurance plan. Teenage girls can list ten different STDs, but they’ve never heard the word “endometriosis.” They know how to fill out a job application, but they don’t know what FMLA stands for, let alone how to use it. According to the American Sexual Health Association, one in two sexually active people will contract an STD by age 25, most of which are curable (1). On the other hand, millions of people will be diagnosed with incurable illnesses, regardless of their sexual activity. I’m not denying the importance of teaching teenagers about the dangers of STDs and unsafe sex. But in the grand scheme of things, STDs aren’t nearly as big a threat as my high school health teacher had me believing. While we’re educating high school students on the biology of chlamydia and gonorrhea, it still takes an average of ten years to diagnose endometriosis, a condition that effects at least one in ten women (2). For me, it took fifteen. Six out of ten adults in the US live with a chronic disease, and four out of ten have more than one (3). Yet we’re sending teenagers off to college and into the workforce totally unprepared for the health problems they’ll most likely face at some point. We’re churning out young adults who think opioids are nothing more than a gateway to heroin, and that if they eat healthy and don’t smoke, they’ll live forever. In reality, people with disabilities are the world’s largest minority – and the only minority you can become a part of at any time.
The “sex, drugs and dating violence” curriculum is a start. But health isn’t about fear. It’s about learning to be well. October is Breast Cancer Awareness Month, and pink ribbons seem to be popping up everywhere. You can buy almost any product emblazoned with a pink ribbon these days, but that doesn’t always mean the proceeds from those purchases help patients and survivors. Want to support the cause and feel good about where your money’s going? My talented cousins at M&P Paint and Design are creating custom wood signs for breast cancer survivors this month – and you can order one for yourself or someone you know! Sign creator Meghan was inspired to give back by her own experience:
Proceeds will be donated to the American Cancer Society for breast cancer research on behalf of the Michigan Softball Academy. The University of Michigan softball team will hold the eleventh annual softball academy on April 23, 2020. Since 2007, this event has raised over one million dollars for breast cancer research!
We all fight our own battles. We all need reminders when times get tough. What word goes on your sign?
Last week, the official winners of the 2019 WEGO Health Awards were announced. The eighth annual virtual awards ceremony celebrated Patient Leaders in 15 categories - there were over 6,000 nominees this year! Nominations were made in July and five finalists were chosen in each award category. The winners will attend a live awards ceremony in Las Vegas next month to be recognized for their advocacy efforts. Merriam-Webster defines advocacy as “the act or process of supporting a cause or proposal.” This definition leaves a lot of room for interpretation, and the WEGO awards are a perfect example of the wide range of advocacy efforts taking place around the world. Nominees represent the best of the best in patient advocacy, from blogs and social media to healthcare collaboration. It’s a truly diverse assortment of people using their unique skills to make a difference in healthcare. I recommend taking some time to check out this year’s nominees, and especially the finalists in each category. To see all of this year’s winners, you can visit the WEGO website. To discover some of my personal favorite blogs, podcasts and influencers who were nominated for WEGO awards this year, keep reading! Ali on the Run (blog and podcast)Nominated for: Best Kept Secret Ali Feller is a runner, writer, mother and podcast host with Crohn’s disease. Check out her podcast for interviews with elite runners and her blog for tips on living (and running) with a chronic illness. Actively Autoimmune (blog)Nominated for: Hilarious Patient Leader, Instagram, Blog, Rookie of the Year Actively Autoimmune is “an online space for those with invisible illness,” created by Zoe, a physiotherapist diagnosed with Ehlers Danlos and lupus. She focuses on self-care and the benefits of exercise, specifically for those with chronic illnesses. Christalle Bodiford (blog)Nominated for: Patient Leader Hero, Instagram, Blog, Rookie of the Year Christalle, who happens to be a fellow Outdoor Mindset ambassador, is also an epilepsy advocate and entrepreneur. Her site features a blog and resources for those living with epilepsy or who just enjoy art and adventure. My Migraine Life (blog)Nominated for: Facebook, Lifetime Achievement, Patient Leader Hero, Blog Sarah, the creator of My Migraine Life, is a mom, teacher and animal lover with migraine. Read about her adventures with her golden retriever and advocacy efforts, like Miles for Migraine, on the blog. Wellness Lately (podcast)Nominated for: Podcast Bridget Shannon and Dana Barron are done dieting. These two East Coast holistic health coaches are all about body positivity and redefining what wellness means. Their podcast features interviews with other women in the wellness world and advice for holistic living. PositiviTea: Good Vibes by the Spoonful (podcast)Nominated for: Podcast, YouTube Mary Lu Ryan and Jacob Kahn share happy stories and good vibes on their weekly podcast. I’ll never turn down a feel-good show from a fellow tea lover. Autoimmune Strong (blog)Nominated for: Best Kept Secret Andrea Wool, the creator and founder of Autoimmune Strong, lives with fibromyalgia and multiple autoimmune diseases. So she understands the challenge of staying fit and active with chronic pain. Her blog and fitness program make fitness more accessible for those with autoimmune diseases.
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My name is Maggie Morehart, and I'm the creator of Incurable. Learn more.
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