September/October 2020 Issue of The Invisible Diaries

THE

e l b i s i DIARIES v In .

SHEDDING LIGHT ON INVISIBLE ILLNESSES THROUGH EDUCATION, AWARENESS, & ADVOCACY

Volume 1 | Issue 2 September/October 2020 theinvisiblediaries.com

Recipes Patients' Rights Sickle Cell Rheumatoid Arthritis Camping with Chronic Illness

The Invisible Diaries

What's Inside?

Magazine

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@colourblind_zebra

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The Publishers' Note Teen Warrior: Astrid Our Mission Camping with Chronic Illness Mental Health: Stephen Physician Spotlight: Dr. Nedd Recipe: Lemon Blueberry Scones The Comical Colon: Jenna

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Artist Feature: Abby Rheumatoid Arthritis: Eileen Sickle Cell: Gilde Who Are The Invisible Diaries?

Product Review by Amber Patients' Rights by Misti Wellness with Mariah Recipe: Cauliflower Steaks

theinvisiblediaries.com

LETTER FROM THE PUBLISHERS Our Beautiful Community We are so excited to publish our second magazine issue, helping to share the voices of many advocates to raise awareness on many important health topics that are not often recognized. We were pleasantly surprised to realize that we have an international group of contributors in this issue! How exciting is that!?

As The Invisible Diaries podcast, magazine, and blog continues to grow, our hearts are filled with passion and joy because TOGETHER we are all getting our voices heard, our stories told, and making a difference (no matter how big or small).

We are all in this together. Know that you are not alone.

Make sure to subscribe with your email on our website, www.theinvisiblediaries.com so you don’t miss out on our latest issue and other amazing content we have coming. If you’re interested in being a contributor or know someone who might be interested, please email us at: theinvisiblediaries@gmail.com, subject line: “Contributor.”

Co-Founders & Editors: Misti Blu Day McDermott Amber Traven Producer/Publisher: Misti Blu Day McDermott Contributors: Astrid Phillips Ashley Rippentrop Gilde Nsianguana Kira Kollmyer Jenna Ziegler Chronic Eileen Stephen Matthew Gunn Court Garfoot Dr. Kester Nedd Mariah Almerez Amber & Misti

Connect With Us!

Here’s to continuing to build a world together where the invisible feel seen and heard.

Best Wishes, Misti and Amber

On The Cover: @colourblind_zebra Pages 17 & 18

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@theinvisiblediaries

The Invisible Diaries

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Teen Warrior

Magazine

ASTRID

I’m a teenager but I feel like my everyday life is different than most of my friends. Some recent things I have been noticing with my heart issues are that suddenly my heart rate will start to beat really fast. Whether I’m standing doing nothing, just walking, or even trying to fall asleep, my heart rate will shoot up. This isn’t very new considering my heart rate changes rapidly when I’m sitting and then stand up but, it scares me a lot. I have Postural Orthostatic Tachyardia Syndrome (POTS), mitral valve prolapse, and Ehlers-Danlos Syndrome (hEDS).

“You never know what someone else is dealing with on the inside“

About a month ago I was making lunch and felt like I was going to faint. My mom checked my heart rate and it was 150 and climbing. I had to sit down and rest. All I was doing was standing and making food. I didn’t feel well at all. Just the other day I was having trouble falling asleep. I felt like I had finally started to fall asleep and then out of nowhere my heart starting racing at about 1 am. I was scared and wasn’t sure what to do so I just sat up and tried to focus on calming down and lowering my heart rate. I hate when this happens. It scares me and I’m never prepared for it. Hopefully I start to adjust to these episodes and become more prepared for them.

@astridphillipss

The Invisible Diaries

Page 4

Magazine

Our Mission

To shed light on invisible illnesses through community, education, advocacy, and awareness.

Banana Bag Oral Solution: Relief from dehydration and fatigue... without the expensive IV supplies and needle sticks.

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Formulated by a Pharmacist, BBOS has since been a tremendous help in improving the quality of life for those suffering from: acute illnesses (stomach bug, cold and flu), migraines, chronic illnesses such as Dysautonomia/ POTS, Crohn's and stomach disorders, dehydration, and travel fatigue bananabagdrink.com @bananabagsolution

Page 7

Camping with Chronic Illness: Tips & Tricks morespoonsplease.com

@ashley_rippentrop

Are you a nature lover? Do you also deal with chronic illness? Is camping even possible for us? I love camping, but it is not a walk in the park when you deal with chronic illness. Camping already takes so much planning and making sure you have all the things you might need. When you are sick, it requires even more effort and planning so I decided to compile a list of some tips if you’re thinking of getting into some nature soon!

TIPS & TRICKS: Pre-hydrate before your trip and continue the hydration throughout your adventure by drinking plenty of water and mixing in some sort of electrolyte packets in some of those water bottles. My favorites: Liquid IV, Banana Bag Oral Solution and Normalyte.

Bring extra medication (your daily meds + more than you think you’ll need in case you lose a couple pills or get stuck out there a little longer + emergency meds like Benadryl, Epipen if applicable and migraine rescue meds if that applies to you).

Pack a First-Aid Kit - include some basics plus anything else you think you could need. (In mine: bandaids, antibiotic ointment, nausea bands, Dramamine, ibuprofen, and a brace in case I roll an ankle).

If heat, bright sun, and/or humidity are big triggers for you, wear a hat and good sunglasses and really, just avoid camping in the peak of the Summer months. I learned this the hard way this trip and dealt with heat exhaustion and a couple migraines throughout the week.

If you have POTS, bring your own salt to make sure you’re getting your sodium in! I brought my own mini salt grinder with Pink Himalyan salt to add to various things and in desperate times (which happened during my most recent trip) to pour right on my tongue with water.

Pack a cooler with snacks that you know your body reacts well to. It’s important to minimize reactions while you’re far from the comfort of your home and local hospital.

Spritz bottles!! This actually helps so much if it’s a hot and sunny day and you have to be outside. Keep your spray bottle in the cooler so it stays cold and then when you’re out, keep it on hand to give yourself a refreshing spritz to help your body keep cool. This is especially helpful for those of us with dysautonomia since our bodies struggle with temperature regulation.

Bring good sunblock with safe ingredients that your body tolerates. Protect your skin and don’t get burnt or you’ll be dealing with an added disadvantage.

Pitch your tent in a shaded spot. This allows for a cool place to come back to if you need to rest and lie down. This will not be possible in all campgrounds so make sure you are taking some time to stay out of the sun for a bit each day, especially during the peak hours.

Bring snacks, your meds, water, salt if applicable, and an electrolyte packet when you’re going for a hike. You don’t want to get caught out there without the necessary things, especially if you wind up taking a longer route than expected.

Pace yourself and take breaks as needed. This isn’t a race; this is your enjoyment.

Bring some sort of camping logbook or journal to record memories and things you want to remember about each campsite and place you went to. Helps for future planning and trips and will be fun to look back on.

Enjoy and soak in all the nature you can! It’s good for your soul!

Ashley Rippentrop

Page 9 The Invisible Diaries

Mental Health Feature: Stephen Matthew Gunn

What is your diagnosis? What was the process of getting diagnosed like? Chronic pain due to severe injuries in my body (28 surgeries), bi-polar, anxiety disorder, and split personality disorder. The process was hell on earth. I can’t explain it more than that; it was f*n hell… It was like looking for an answer but the answer was death because the medications that are supposed to be taken for a short time, I had been given them for 20 years instead of sitting down with me and really figuring out what the problem was. Thank God I was smart enough to heal myself, by taking everything I learned over the years of seeing specialists and by the grace of whatever, I had access to a safe place to heal. I had my psychological diagnoses reversed and changed to PTSD with a multi-polar depression, which is due to all of the traumatic experiences I have been through. It is also known as complex PTSD. What have been your struggles and how do you manage? I’ve had probably every struggle known to mankind. I’ve been homeless, been in gangs, addicted to pharma, street drugs, and alcohol. My addictions were because I was self-medicating, trying so hard not to feel or remember anything. I’ve attempted suicide 10 times. I had many family and relationship issues. I’ve moved countless times. I was unable to manage my life, but after years of hard work and prioritizing my healing 100%, I now cruise at post traumatic growth and have selfawareness, and I am a legal card-holding medical marijuana patient. I manage my chronic pain without pharma and I have a profound understanding of my PTSD.

1-800-273-8255 National Suicide Prevention Lifeline

"Find a mentor that you believe in, trust, and relate to. When I am a mentor, others can relate to me because I have been through and done a lot, and have pulled through to be the person and healer I am now. This gives hope and inspiration."

@stephenmatthewgunn

What is self-care to you and how do you prioritize your mental health? Self-care is everything.

It is the key. My mental health is #1 before anything else, because it can be dangerous if I am not aware of myself. If I do not stay on top of my mental game, and my health, the monster in me comes out. I don’t ever want to hurt another human being again in my life. I never want to lose the color of life and see it dark like I did before. Ever. I see rainbows all the time. I see beautiful things, Gaia shows me and gives me so much. I have a daily, repetitious routine. I take care of myself, I do certain things to be grounded and self-loved. I wake up, clean up, think about my dreams, take my marijuana and flow about my day. My brain is computing constantly, which is PTG awareness – which is a higher level of functioning. Patients like me have a high stress level, which I have to monitor and keep myself calm. I breathe. I make sure that my environment is stress-free as humanly possible. Stress and negativity are poison. If I detect a negative, I try to solve it or it gets kicked out of my universe. Nutrition is important and I listen to my body for hunger and thirst cues. I had to get strict with my pleasure center because it had become too out of touch. I used to reward myself when no reward was due. Now it is ok to reward myself because I act, do, think, and dream good. My rewards are small and meaningful - I’ve done this for so long and I know this works – and not just food, but sometimes adventures. Small measurements. I like having 10 small adventures vs one big one. Of course the big one is a big treat, but segmenting has proven to work for me. My lifestyle is one of higher, inner awareness. I am humble, kind, grateful.

What is your treatment route? My treatment route was to start at below rock bottom. I was so below rock bottom that I was looking up at rock bottom, knocking at heaven’s door. I had horrible health, couldn’t walk, was 350-something pounds – was wearing size 4x and 46 pants.

Could hardly breathe... At that time I had no idea about rebirth. I started eliminating stress by looking at my past and deciphering it all, deciding what was worth keeping and what could be scrapped. Then I started learning about nutrition and started feeding myself properly. I scrapped sugar and started losing weight. Then I started weaning myself off of pharma. I let my morphine pump run dry then I had it removed. From there, I continued to look at every aspect of my life and make conscious, serious changes for the better. I sought a renowned clinic in Germany where I spent a total of 6 months; 3 months at the beginning and 3 months at the end of 2018. It was there that I encountered PTG. Then I put 1600 on my ebike. There are a lot more details here. Cannabis and time adventuring in nature have been crucial for my healing. And a LLLOOOOTTTTT of alone time. Probably a year and half. I eliminated anything that was bringing me down, I broke them down, identified them all. I wasn’t born with fears, yet I was taught and had picked up certain fears along the way. Fears are based on an incident that happens, before that you don’t have a fear there but then something happens… If your upbringing is not showing you how to cope very well, you may push it down to the point that it comes up 50, 60 years later. It opens up a portal to the moment of trauma that you never dealt with… If you bury it and still feel miserable because you overpower yourself and because you are being enabled to push it down… Suddenly that big thing has evolved from something little, has been festering then suddenly it is OUT with a vengeance, like William Wallace.. I gave the F up on everything I ever knew and walked away. I had to relearn it. Start from scratch. But I already knew how to start over because I had it all in my head. I feel like I am on the top of Mt. Everest on a clear day. And the sun is coming up. It is clear!!! When I was doped up, sometimes I thought I had dementia cuz I would forget everything. It was sad.

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Physician Spotlight:

Dr. Kester Nedd. DO Design Neuroscience Center (DNC) in Doral, Florida.

Dr. Nedd is a Board-Certified Neurologist, with subspecialty training in Neurological Rehabilitation and Neuro-trauma.

Instagram: @Dr.k_nedd Facebook: Dr.KNedd

Website: www.concussiontbi.com

Practice website: www.dncneurology.como Address: 8875 NW 23rd St Doral, Florida 33172 Contact email: knedd@concussiontbi.com elliem98@concussiontbi.com Contact number: 305-905-6379

Dr. Kester J. Nedd brings 30 years of experience with over 250,000 patient encounters of persons with concussions/traumatic brain injury (TBI). He is involved in the evaluation and treatment of the most complicated cases of patients with this condition; offering unique solutions that make positive changes in the lives of people who otherwise would have little or no hope. He developed and postulated the Brain Hierarchical Evaluation and Treatment (BHET) method; a unique multidimensional approach that considers the hierarchical organization of the brain and how this order is impacted by injury and the recovery process.

Neurology is a specialty that provides care for patients with neurological disorders, including movement, and neuromuscular disorders, neuroinfectious diseases, epilepsy, neurorehabilitation, neurotrauma, neuro oncology, neuro critical care, neurovascular, neuroimmunology, headache, pediatric neurology, and sleep disorders. Dr. Nedd’s subspecialty focus is Concussion and Traumatic Brain Injury (TBI), neurotrauma and neurorehabilitation. Through this specialty, he also developed a continuity of care model, where neurological care starts in the acute phase immediately following trauma, and continues through the intermediate rehabilitation unit, acute rehabilitation unit, and the outpatient setting. This allows continuous evaluation of the degree and level of disorganization of the brain after injury, which guides a stepwise approach to management and treatment of brain injury that has changed and saved so many lives for the past 30 years.

DNC is a comprehensive brain injury center involved in the evaluation and treatment of individuals with traumatic brain injury and other neurological disorders.

This center enhances outcomes by delivering neurological and rehabilitative care and treatment utilizing an integrative interdisciplinary team approach. Our center provides a wide range of physical and cognitive rehabilitation services utilizing skilled, on site physicians, physical therapists, occupational therapists, speech and language therapist, and neuropsychologists. Our qualified rehabilitation experts work together to develop a plan of care that is tailored to the patient's needs and recovery goals. The team develops programs with specific timelines, treatment schedules, treatment modalities, and recommendations with protocols to track patient progress.

DNC’s mission is to implement a customized program with flexibility to meet the needs of each patient, depending upon their level of disability and their ability to reintegrate into their community.

Our qualified rehabilitation experts work together to develop a plan of care that is tailored to the patient needs and recovery goals. The team develops programs with specific timelines, treatment schedules, treatment modalities and recommendations with protocols to track patient progress.

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"Hi! I’m Kira Kollmyer. I’m 21 and from Washington State, USA. I am sharing with you my favorite recipe for Fresh Blueberry-Lemon Scones.

Here in the Pacific Northwest, we have THE BEST blueberries in the summer, although I might be biased.

Blueberries are one of my favorite foods, and one of the few foods that I don’t react to. Paired with fresh lemon zest, these moist blueberry scones are the best summer treat!

From a young age, I dealt with what we thought were typical environmental allergies, but in high school, we realized there was much more to it. To date, I’ve been diagnosed with MALS, POTS, EDS, Sjogren’s Syndrome, Visceral Hypersensitivity Syndrome, Hypothyroidism, and OCD. I do have quite a few things that are currently undiagnosed as well. My most difficult symptoms are abdominal pain, nausea and constant headaches/neck pain, although I do deal with a lot more symptoms than that. I cannot work or attend school right now, but baking is one of the few things I can do sitting, with souschef Mom as my helper. When I have the energy, I also love coaching girls youth soccer, training my dog, Oakley, and taking pictures for my photography/dog account, @adventures__with__oakley. I’m hoping one day that my conditions will be diagnosed and that I will have a good treatment plan that will allow me to go back to university to pursue a degree in mathematics and computer science!"

Fresh Blueberry-Lemon Scones

by Kira Kollmyer

@breathing.is_hard

This is one of my favorite recipes to make in the summer!

Blueberries are my favorite berry. We always pick a TON in the summer to eat fresh, freeze or bake!

Yield: 8 Scones Prep time: 20 minutes Total time: 45 minutes Contains: Gluten, Milk, Eggs Ingredients: For the scones: 2 cups all-purpose flour, plus more for work surface 1/2 cup granulated sugar 2 1/2 teaspoons baking powder 1/2 teaspoon salt zest of one lemon 1/2 cup butter, frozen 1/2 cup heavy cream (can sub: heavy cream for 2 Tablespoon melted butter mixed with 6 Tablespoons milk) 1 egg 1 teaspoon vanilla extract 1 cup fresh blueberries, although I always add a bit extra! (Frozen berries work too)

For the glaze: 1 cup powdered sugar 2 Tablespoons lemon juice

Instructions: Preheat oven to 400F. Line a baking sheet with a baking mat or parchment paper. In a large bowl, add the flour, sugar, baking powder, salt and lemon zest.

Whisk together. Grate the frozen butter into the dry mixture. Use your fingers to break up the clumps of butter until they are into small pieces and every piece of butter is covered with the dry mixture. In a small bowl, add the heavy cream (or milk/butter mixture, see above), egg and vanilla extract. Whisk together. Pour the wet mixture into the large bowl with the dry mixture. Use a wooden spoon or spatula to fold the mixture together. Don’t use an electric mixer so you don’t overwork the dough. Add the washed blueberries to the dough and fold them in. I usually use my hands. Try to avoid squishing any blueberries or they will make the dough really wet and it will be harder to work with. Transfer the dough to a floured cutting board, and with floured hands, press the dough ball into a circle about 8 inches across. Using a sharp knife, cut the circle into 8 equal slices. Transfer each slice to the baking sheet keeping the slices at least 3 inches apart. Bake for 18-25 minutes, depending on your oven.

The scones will be ready when they are lightly golden on the outside. Let cool for a few minutes while you are making the glaze. To make the glaze, whisk together the powdered sugar and lemon juice in a small bowl. You can add more lemon juice to thin out the glaze to your liking. Drizzle glaze over scones right before serving. The scones will taste the best when eaten right away, but they can be stored in an airtight container for about three days and heat them up for about 20 seconds in the microwave before serving. You can store them with or without the glaze. Enjoy!

Wildling

Use promo code: TheInvisibleDiaries to save 15% at checkout! mistibludream.com/shop

Apothecary

Page 15 The Invisible Diaries

The Comical Colon

by Jenna Ziegler from thecomicalcolon.com @thecomicalcolon I’m Jenna Ziegler and I live in a quiet, nature-filled town in southern Tennessee. I live with three, interconnected autoimmune diseases: ulcerative colitis, enteropathic arthritis, and primary sclerosing cholangitis (PSC).

Ulcerative colitis is an inflammatory bowel disease (IBD) in which my immune system attacks my own intestines, causing inflammation, pain, bloody stools, urgent bowel movements, and a myriad of other symptoms. I was diagnosed in 2014, and have thankfully been in remission for two years (my longest remission yet!), thanks to my Entyvio infusions every eight weeks. I also live with enteropathic arthritis, an inflammatory arthritis that currently affects my fingers, shoulders, and elbows. Although I don’t need any medication for my arthritis at this time, it’s especially painful in the wintertime and very inconvenient since I’m a writer.

My third autoimmune condition is primary sclerosing cholangitis (PSC), a rare, progressive liver disease that affects only 10 in one million people. My overactive immune system attacks the bile ducts in my liver, causing them to become inflamed and narrowed. This traps the bile inside my liver, which can lead to liver fibrosis (scarring), cirrhosis, liver failure, and the potential need for a liver transplant. Thankfully, I’m doing very well with little pain thanks to the medication Vancomycin.

The main struggle with all three of my illnesses is chronic fatigue. On top of two jobs and managing my blog and social media, I’m working on several large-scale projects including writing a novel and organizing PSC advocacy efforts. But with the fatigue, I simply can’t do it all —at least at the pace I would have been able to before my diagnoses. When I leave things on my to-do list unchecked, it makes me feel guilty and lazy. Deep down, I know that’s not true. I just need to do what I can, take breaks, take naps, go to bed early, and try again tomorrow.

A common misconception about the liver disease PSC is that it’s caused by excessive alcohol consumption. This is why whenever I tell people that I have this condition, I explain that it’s an “autoimmune, non-alcohol-related liver disease.” I’ve heard stories of PSC patients going to the ER due to painful cholangitis attacks (a symptom of PSC in which the liver’s bile ducts become infected), who were not taken seriously. I think the main reason this happens is because PSC is so rare and not well-known, and the thing that people are familiar with is alcohol-induced liver dysfunction. Through my advocacy work, I hope to spread awareness about PSC so there is more understanding and empathy around the disease.

What do you do to take care of yourself? I’m a huge believer in making time for yourself each and every day.

Self-care shouldn’t be pushed off for just the weekends!

Every day, I do something that brings myself joy—it’s usually journaling, writing poetry, sitting outside in the sunshine, lifting weights, or taking a walk outside. It’s so important to find the things that make your soul happy and proactively set aside time for them every day.

How is your mental health affected and how do you manage that? The main way my chronic conditions affect my mental health is causing stress and fear around the future. My mind sometimes wanders to thoughts like, “When will my ulcerative colitis flare again?” “What if I develop antibodies to my medications?” “Will I need a liver transplant one day?” I manage these fears by redirecting my focus on the things that make me happy.

This is why practicing self-care every day is so important to my health management. By writing down my thoughts in a journal, I’m able to process them and leave the fears on the page, clearing my mind and focusing on the present.

What is a scary/difficult moment in your life and what was the best? One of the most difficult moments in my life is when I had to drop out of school. In 2018, I quit my job in human resources to pursue a master’s degree in dietetics. However, I fell into the worst ulcerative colitis flare of my life and ended up in the hospital for a week.

My brain fog made it impossible for me to understand what my professors were teaching. I couldn’t retain information and, one day, I even had to run out of the chemistry lab, stripping off my protective goggles and lab coat to sprint to the bathroom. I began failing my exams and knew I wasn’t healthy enough to pass the classes.

Even though it broke my heart to drop out, I knew it was the right decision. One of the best moments of my life is when I was approached by two amazing chronic illness podcasters earlier this year—About IBD and PodcastDX— inviting me to be a guest on their podcasts! I was ecstatic that after my two years of blogging, doors were opening for me to share my story in a different way. I appreciate that these opportunities helped me get out of my comfort zone and offer resources for both the IBD and PSC communities. You can listen to these episodes by visiting the link in my Instagram bio!

Tell us something fun about you: At any given moment, you can find me furiously writing in a notebook from my arguably excessive journal collection, listening to a podcast, or eating some white cheddar-flavored snack. I am a cat person, a summer person, an ISFJ, and Enneagram 9w1.

And, though I was born and raised in California, I now live in Tennessee with my husband Tyler and our rescue cat, Newbert.

What advice do you have for others who are recently diagnosed? When you are ready, share your story. There is something empowering in sharing your story with others. Whether you convey it through writing a blog, posting on social media, composing songs, creating art, or any other way, it can be an extremely cathartic and therapeutic experience. For me, writing about my health story on my blog played a huge role in coming to terms with my chronic illnesses. What would you like others to know about your illness? I’d like others to know that my chronic fatigue has made me very protective of my time and energy. If I don’t get enough sleep or time to myself, my already weakened immune system will crash and I’ll get sick (something that adds a lot of stress to someone who is already chronically ill). I really appreciate planning events or Facetime calls up to a week in advance so I can prioritize my tasks and allocate my energy accordingly. This small thing makes an incredibly powerful difference in my health management. You can read more about my chronic illness journey on my blog at TheComicalColon.com

Artist Feature:

Page 17 The Invisible Diaries

Abby

@colourblind_zebra

"I’m Abby, a disabled and chronically ill artist from the UK. I have been ill for 7 years, but only found answers as to why I’m ill about 4 years ago. For years I was told that my pain and what I was experiencing was all in my head. This led to me being misdiagnosed, mistreated and denied the treatment and care that I needed. Eventually I found answers, but I am still putting pieces of the puzzle together to this day. The years of emotional abuse and gaslighting I experienced really impacted my mental health and is one of the big reasons I am so passionate about fighting for awareness of the things we go through as a community.

I have always been creative, so when I bought an iPad in early 2019, I suddenly found a passion for digital drawing, specifically illustrations about chronic illness, disability and the issues facing those who have them. Since then, I have found some amazing friends and built a supportive community of lovely people. Each and every day I am excited to create, continue to spread the message of inclusivity and to support those who have been through difficult things just like me."

Q&A What inspires you? The comments and messages that I get from my followers about how my art has helped them realize they aren’t alone in this journey inspires me and makes me passionate about continuing to raise awareness for both disability and chronic illness and the hurdles we face as a community.

What is your diagnosis? Postural Orthostatic Tachycardia Syndrome, Bowel Dysmotility, Asthma What advice do you have for a new artist that is looking to create or find an outlet? Draw what makes your heart sing or lights a passion in your soul. You can’t go wrong from there.

“Go at your own pace” – Life with chronic illness can be overwhelming and all-consuming; it’s okay to take time to pause, breathe and take a step back.

“Medical Gaslighting” – Coming across a doctor who listens and takes your perspective into account during an appointment feels so amazing when all you’ve experienced is doctors who don’t listen and deny your own experiences.

We should not have to fight for answers, we should not have to battle to be believed.

“Makeup” – The assumption is made quite often that if a chronically ill person wears makeup, they must be feeling less ill on that day. For those of us who do have chronic illness, we know this isn’t true. After all, many people use makeup to instill a sense of self-esteem when otherwise it’d be hard to face the world.

“But You Don’t Look Sick” – 96% of chronic illnesses are invisible.

You can’t tell if someone is sick just by glancing at them. If you’ve ever had this comment directed at you, you aren’t alone.

It’s a big misconception that needs to be combated.

Page 20 The Invisible Diaries

When I was diagnosed with Rheumatoid Arthritis, I had heard the name many times before. My aunt lived with it - but I never really understood the illness until I had a name for my mysterious chronic pain and other symptoms I couldn't quite understand.

What really surprised me though was that I was only 29 and now living with a disease I thought only impacted the elderly and was merely joint pain.

I was wrong - here are 5 painful and exhausting facts about Rheumatoid Arthritis.

www.chroniceileen.com

@chroniceileen

Five Facts About Rheumatoid Arthritis 1. It's a whole lot more than only joint pain...like a lot more.

Anyone living with RA can tell you the disease is debilitating - fatigue, pain, sleep issues, mental health struggles, countless medications, brain fog, frequent infections and what seems like a never-ending list of comorbidities that follow because often with chronic illnesses, they are like chips you often can't have just one.

Common comorbidities with rheumatoid arthritis include cardiovascular disorders, gastrointestinal, renal and pulmonary diseases, infections, osteoporosis, tumors, and depression.

2. RA is one of the most common forms of arthritis but there are others. Many others, in fact, there are actually over 100 forms of arthritis, many of which are autoimmune like rheumatoid arthritis.

Others include psoriatic arthritis, ankylosing spondylitis, scleroderma, lupus, and the well-known wear and tear old age-associated osteoarthritis. RA and OA are quite different diseases. While OA has quite devastating effects too it is not a systemic autoimmune disease like rheumatoid arthritis.

3. It's more common in women but men experience it too. So do children. Approximately, one percent of the world population lives with rheumatoid arthritis (RA), with at least twice as many women affected as men. The World Health Organization estimates more than 23 million people live with RA and this number will continue to increase. Arthritis is a common health problem in the global population, affecting more than 350 million people and a leading cause of disability. Arthritis impacts any age, sex, or race.

4. No cure exists. No amount of yoga, turmeric, kale, or vegan diet will cure my illness. While they may help, it's not guaranteed it will cure someone or even help everyone. Every case for arthritis is different, what works for may not work for another and many do require disease-modifying medications to stop the debilitating progression of the disease. Left untreated, RA can be devastating, not just on the person living with the disease but also their loved ones.

5. It has devastating effects across the globe. It's one of the world's leading causes of disability and one of the most expensive diseases to treat for both the patient and the economy.

Eileen Davidson, also know as Chronic Eileen is a rheumatoid arthritis advocate and blogger from Vancouver BC Canada. She advocates as an Ambassador for The Arthritis Society, a member on Arthritis Research Canada's Patient Advisory Board and is a regular writer for Creaky Joints.

Page 21

5 Facts: What is Sickle Cell?

by Gilde

@SickleCell_Sundays

The older I get, the more I realise how many people either don’t know anything about what Sickle Cell is or they don’t know how it can affect an individual. I wonder why that is. Is it because it is an invisible illness? Is it because we need more education and awareness? Is it because it is a disease which predominantly affects the black community? Or is it simply because many people aren’t coming across anyone who lives with Sickle Cell? There are just so many possibilities...

I think one of the main reasons is empathy. Many people find it so hard to empathise with us Sickle Cell warriors. We suffer from something that people will never really understand/experience, unless they have Sickle Cell themselves. This then creates some naivety.

Almost everyone will at some point experience a bacterial or viral infection. We’re all also prone to experience other health complications; for example, a cardiac arrest or stroke. However, not everyone is prone to suffer from a Sickle Cell attack. Only 15,000 people in the UK have Sickle Cell.

Because of that, it becomes easy for us as a society to dismiss our plight.

My name is Gilde and I’m a Sickle Cell warrior from Essex, UK. I am one of 5 sisters and the only child with Sickle Cell Anaemia.

I found it really hard trying to narrow Sickle Cell down into 5 facts as there is just so much about it. However I hope you learn something new:

5 Facts about Sickle Cell: Sickle is an inherited disease which affect our hemoglobin and the shape of our red blood cells Individuals must inherit two of the sickle cell gene, one from each parent Sickle cell predominantly affects those from an Afro/ Caribbean background.

However the Sickle Cell gene is found in all ethnic groups Episodes of pain known as a crisis can be a major side effect for Sickle Cell. A crisis can occur spontaneously and happen anywhere in the body. Lasting hours, days and weeks Kidneys, liver, spleen, heart and lungs are all organs that can be affected by Sickle Cell

Continued...

At the age of 25, I can finally say that I have accepted the fact that I have Sickle Cell. Accepting this fact was probably the hardest thing I’ve had to do in life because living with Sickle Cell is not easy physically and mentally. Physically, your body goes into overdrive overcoming pain and a variety of complications. Mentally, you have to cope with the side effects of having a lifelong painful and invisible illness. You have to learn that you are the only one who can truly help yourself through research and using your voice. In addition, you have to learn how to speak up for yourself when something is not right. For this exact reason, I decided to become an advocate for Sickle Cell in the hope that I can educate all those around me and the wider community. This not only benefits me, as my family and friends will know the best ways they can help me. However, becoming an advocate also helps other sickle cell warriors and future generations.

Over the last years, I’ve become more vocal about my personal experiences living with Sickle Cell. I had decided to share my personal journey by creating an instagram page and YouTube channel called “Sickle Cell Sundays”. Not only is this dedicated to spreading awareness for Sickle Cell, but I also aim to educate by showing first hand experiences and interacting with my audience.

Sickle Cell is a life long disease with one cure (a bone marrow transplant) and this is not available to everyone as even that comes with many risks. As a result, Sickle Cell warriors have to learn how to cope and manage their condition in order to live a better life.

Living with Sickle Cell has its fair share of ups and downs. However, positives I take from having Sickle Cell is that it gives life a new perspective. It is a daily reminder of how strong I am and how strong I have to be in order to fulfill my life’s purpose. It’s also made me realise that life shouldn’t be taken for granted regardless of the situation I am in.

For more information on Sickle Cell, please follow my Instagram page (@SickleCell_Sundays) and you can always message me. Lastly, you can help support Sickle Cell warriors through lots of different ways including educating yourself, helping raise awareness and donating blood (we especially need more black donors).

PEACE, LOVE, CURE,

Gilde x

Page 23

Who are we?

Misti and Amber spent many years being medical puzzles that sat on a shelf collecting dust. Their mission is to make the invisible visible and to raise awareness while building a community. @theautoimmuneadvocate @mistibluday Amber is a Florida native, wife, mom, and one of the creative minds and co-founders behind The Invisible Diaries. After graduating with a degree in radiologic technology, she fell in love with the medical field and helping people. In 2009, after a hospitalization for a ruptured ovary due to complications of PCOS, she was diagnosed with interstitial cystitis. With contradicting information that left her feeling isolated, overwhelmed, and frustrated, she could see there was a need for change and began working to build a community and platform where she could raise awareness and connect with others. Since 2009, Amber has been diagnosed with Fibromyalgia, Dysautonomia, POTS, IST, Traumatic Brain Injury, and is still seeking answers for suspected genetic and neurological issues.

Amber is now a Certified Health Coach, focusing on helping people with autoimmune disease navigate their unique health situations, and has made it her mission to advocate and help give a voice to those who feel unheard and unseen due to their invisible illness. She hopes to return to school to pursue a degree in nursing and continue to work with patients and physicians who are in the ever-growing field of chronic and autoimmune diseases. {When she isn't working on The Invisible Diaries or The Autoimmune Advocate, you can find her journaling, writing poetry, or in nature camping with her family.}

Misti Blu is originally from Southern California and migrated to Springfield, Missouri before settling down in Rockledge, Florida. She was born with a congenital heart defect called Wolff-Parkinson-White Syndrome, which is an extra bypass tract in her heart that caused arrhythmias such as SVT. This was undiagnosed until she was in her teens. After 4 cardiac ablations to correct the issue, she needed open heart surgery to repair her severe aortic valve insufficiency, something that took years to discover. In 2017, Misti ended up with a pacemaker for Sick Sinus Syndrome and Neurocardiogenic Syncope, also an issue that had always been there.

With years of several chronic illnesses such as her multiple heart issues, IBS, endometriosis, migraines, POTS, dysautonomia, sleep disorders, fibromyalgia and Raynaud's (to name a few), it was then pointed out that her hypermobility was actually another clue and that she had Ehlers-Danlos Syndrome. Genetic testing confirmed the diagnosis.Years passed by with medical negligence, misdiagnosis, being dismissed and belittled by healthcare professionals. After spending her entire life searching for answers, Misti decided her purpose in life was to help others learn to advocate for themselves and to teach doctors how to listen. No one should ever wait their entire life to get diagnosed and treated. She is currently a student at EFSC working on getting her Bachelors in Biomedical Sciences.

Page 24

Product Review: USB Mini Fan

Sometimes you have to think outside of the box when you live in the south where it feels like summer most of the calendar year. Especially when you live with a chronic condition that makes it difficult to regulate body temperature. Getting caught in the heat with no way to cool down can quickly make symptoms spiral out of control and ruin the most well-laid plans. I am constantly looking for “life hacks” to make my chronic illness life a little more manageable and I love adding tools to my arsenal because let’s face it, I’m determined to not give up everything that I love to do, and I really love to be outside. So, while at Disney World one afternoon, standing in line for a ride outside, I began looking around at how many people were using personal fans. Disney even sells them attached to water bottles so it becomes your own personal mister. That in itself is amazing unless you’re like me a person with a broken personal thermostat. You drench yourself outside, and then walk inside, refreshed, but soaking wet, right into the blazing air-conditioning on full-blast and you almost freeze to death.

If it sounds like I’m speaking from personal experience, it’s because I have done this on more than one occasion. Now you’re wet and cold. Great. I knew that I needed something, but it needed to meet some specific criteria. One, it needed to cool me off. Two, it needed to be rechargeable so that I could use it for long periods of time if needed. Three, it was affordable.

And four, it was compact enough to fit into a fanny pack, back pocket, or backpack because in the heat, the less I carry, the better. Once again, Amazon to the rescue. I searched for a small, rechargeable personal fan and voila, Amazon delivered. Here are the details on the one that I have been consistently using for a year: Where I bought it: Amazon (duh!)

What’s it called: Aluan Handheld Fan (mini camera fan) Price: $12.99 (as of August 2020) Options: Comes in 4 colors (as of August 2020) Size: 12.9x7.9x2.1 cm (4.9 x 3.1 x 0.8 in) Smaller than an iPhone 8Weight: 68g (2.4 oz) Power: 2.5w Battery Capacity: 800mA Charging Time: 20 mins in 2A; 40 mins in 1A What’s included: 2-speed camera fan, USB cable, hanging lanyard

In my experience, it continuously works for about 160 mins on low speed before needing recharging, and a little less than half that on full speed. It’s quiet (I use it in college classes sometimes), portable, affordable, and it helps move the air on my face or nape of my neck when I need a little help being outside. Bonus, it works for setting make-up foundation too! In all honesty, if I am too hot, I find a place inside to cool off. But this little gadget has come in handy in situations where I am already inside, and there just isn’t enough air moving too. It’s something I don’t leave home without now, and I am glad to have yet another tool to add to my toolbox to help me manage my chronic illness symptoms. I will take all the help I can get, and when I find something that helps, I want to shout it from the rooftops and share with all of my chronic illness friends!

Amber Traven

@theautoimmuneadvocate

Page 25

Patients' Rights: Emergency Care The Emergency Medical Treatment and Active Labor Act (EMTALA) was passed in 1986 by the US Congress as part of the Consolidated Omnibus Reconciliation Act (COBRA). The intent of the law was to ensure patient access to emergency medical care. The practice of dumping is when uninsured patients were transferred strictly based on financial reasons.

Over the years, this law has enforced nondiscrimination for those who are uninsured.

In Chicago during 1986-1987, two Cook County Hospital physicians wrote their definition of dumping as “the denial of or limitation in the provision of medical services to a patient for economic reasons and the referral of that patient elsewhere.” Cook County Hospital received a majority of transfers of patients who where minorities or unemployed. Only 6% of those patients had given written consent of the transfer. This occurrence was not just in Chicago, but also prevalent in most major cities. The Joint Commission on Accreditation of Hospitals stated that “individuals shall be accorded impartial access to treatment or accommodations that are available or medically indicated, regardless of race, creed, sex, nationality, or sources of payment for care" (Zibulewky, 2001).

EMTALA states: "In the case of a hospital that has a hospital emergency department, if any individual… comes to the emergency department and a request is made… for examination or treatment for a medical condition, the hospital must provide an appropriate medical screening examination within the capability of the hospital's emergency department, including ancillary services routinely available to the emergency department to determine if an emergency medical condition exists."

Though EMTALA requires Medicare-participating hospitals to provide emergency care despite financial ability, many hospitals still do not comply. Protecting the uninsured is an ongoing challenge. A study by Hsuan et al. in 2018 identified five main causes of noncompliance: financial incentives to avoid unprofitable patients, high referral burden at hospitals receiving EMTALA transfer patients, reluctance to jeopardize relationships with transfer partners by reporting borderline EMTALA violations, and opposing priorities of hospitals and physicians.

Setting regulations and standards in healthcare is critical to patients’ rights and the quality of care they receive. The ethical delivery of hospital emergency services instilled in 1986 takes measure to protect a group of patients from being discriminated. These acts and laws come into place after risks, such as patient dumping, are recognized on a large scale. The EMTALA act started in 1980 with piles of dreadful stories stacking up. We still have cracks in our healthcare system, but it all starts with sharing your story to result in actions that can protect others.

Misti Blu Day McDermott

*This semester I am inspired by two classes from my Biomedical Science Bachelors program: Epidemiology and Healthcare Risk Management

mistibludream.com

@mistibluday

Page 26

Health & Wellness: Calming Breath For Anxiety To the readers, Hope you all are doing well. In these interesting times the stress added by being a chronic illness warrior can take its toll on us mentally and physically. The healing practice of yoga can help us steady the mind and release deep rooted tension in the body.

This month, let's start with a yoga basic - Breath! While you may think "Of course I know how to breathe....." Consider certain practitioners who train their lungs to accomplish superhuman feats, lowering the heart rate to survive weeks without food or water, or raising the body temperature to survive below freezing temperatures. On a more practical note - Use the ancient breathing technique below to activate your parasympathetic nervous system and release anxiety and stress. Namaste!

Calming Breath for Anxiety (Violoma Pranayama) Take one full inhale to the top of the lungs, then exhale all the air out of the lungs slowly. Next, inhale one third of the way, then hold for 2 seconds, inhale the second third, hold for 2 seconds. Inhale to the top of the lungs, hold for 2 seconds, then release all the air from the lungs through the mouth slowly. Repeat as often as needed. thetiniestwarrior.com @thetiniestwarrior Mariah Almerez "The Tiniest Warrior" is a Yoga Instructor and artist living in Melbourne, FL She has been practicing yoga over 10 years and is an RYT500 instructor. Inspired to teach by her love of movement and mind/body wellness, Mariah has proven success in helping clients of all body types and ages achieve their health and wellness goals. With a background in teaching clients with limited mobility, children,and those with physical and mental disabilities she is equipped with the knowledge to help you build strength, balance, and a mindful practice you can continue to enjoy for your entire life. She is a Chronic Illness survivor, and uses her practice to help manage and relieve symptoms of chronic pain.

Page 27

Cauliflower Steaks with Sautéed Spinach

By Court Garfoot from Adelaide, Australia @courtgarfoot I am a marketing specialist and student nutritionist; in my spare time I am a digital content create and recipe creator! I live with fibromyalgia, IBD and PCOS but also dabble in depression and anxiety. I am passionate about sharing my life with chronic illness. I have achieved many things and live a fulfilled life despite my diagnosis, and because I'm not what people picture a chronic illness/life with a chronic illness to look like. I have an abundance of spinach and cauliflower in my garden at the moment, which has inspired this recipe. I also follow the autoimmune protocol so wanted to create a recipe using those ingredients (fresh from the garden) that could be enjoyed by people with an autoimmune disease.

Recipe description: Cauliflower steak ingredients 1 small head of cauliflower 2 tablespoons olive oil 2 cloves garlic, crushed pinch salt 1 teaspoon live juice (I used 1/4 lime) 1 teaspoon nutritional yeast Spinach ingredients 10 spinach leaves, sliced into ribbons 1 tablespoon olive oil 1 clove garlic, crushed pinch salt

Method: Preheat oven to 180 degrees celsius. Cut cauliflower into 4 x 1cm steaks from the stem down. Mix olive oil, garlic, lime juice and salt. Brush half the mixture over the steaks.

Bake in the oven for 15 minutes before turning and brushing the other side. Sprinkle with nutritional yeast and bake for another 15 minutes. Place spinach, oil, garlic and salt in a saucepan on a low heat for 3-5 minutes until the spinach has changed colour and softened.

Transfer to a serving plate and enjoy!

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