THE
e l b i s i DIARIES v In
SHEDDING LIGHT ON INVISIBLE ILLNESSES THROUGH EDUCATION, AWARENESS, & ADVOCACY Toxic Water
Volume 1 | Issue 1 July/August 2020 theinvisiblediaries.com
Bipolar Disorder Tyler Farnham: Skydiving accident survivor
The Invisible Diaries
What's Inside?
Magazine
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@rana2.0
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The Publishers' Note Teen Warrior Our Mission Service Pet Mental Health Physician Spotlight
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Skydiving Accident Artist Feature 5 Facts: Meniere's Disease Toxic Water Who Are We? Product Review Q&A on EDS Self-Care
LETTER FROM THE PUBLISHERS OUR DREAM JOB We will never forget the day that The Invisible Diaries was creatively born. We were having lunch at our favorite local cafe, talking about our shared love for advocacy and desire for change. Being women who suffer from multiple autoimmune and chronic issues ourselves, we expressed all of the things we would want out of a platform: what we felt was missing, how we could add our voice and strengths to contribute to the growing need of more resources for the chronically ill. We are so excited to be launching our very first issue of The Invisible Diaries Magazine and can’t wait to share this next venture with all of you! 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.”
Created by: Misti Blu Day McDermott Amber Traven Contributors: Tyler Farnham Taylor-Rae Lancaster The Atwal Clinic Rana Awadallah Alzheimer's Association Astrid Phillips Jade Stel Bailey Leah Cavazos Who We Play For
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: @rana2.0 Pages 17 & 18
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@theinvisiblediaries
The Invisible Diaries
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Teen Warrior
Magazine
ASTRID
Being a teenager and having POTS (Postural Orthostatic Tachycardia Syndrome) can be really hard at times. It’s hard for me to do everyday things that my friends can easily participate in. Like at school during track, I mostly walk and my friends usually run ahead of me. If I do run my face turns very red for most of the day. It’s hard to breathe, my blood pressure drops, and my heart rate goes up. My teachers always think I just don’t want to participate; if I could then I would… but it’s hard to. Even some classmates would make fun of me saying stuff like, “Oh, I have heart issues too. Let me skip running!” and continue to make jokes with the teacher. I know they are just joking but it still hurts my feelings. Having pots doesn’t just affect me at school, it also affects me on the weekend with friends. My friends would invite me to go to the new trampoline park and although it’s fun for the first 30 minutes or so, later I start to feel exhausted. My face will turn red, blood pressure drops and of course my heart rate raises. I usually try to run to the bathroom and take a break while my friends are still having fun. They like staying at the trampoline park for hours but I can’t really handle it well. I know it’s their favorite so I try to enjoy it too. Typically when I’m home I can catch a break from my episodes but sometimes it’s hard. I get asked to do simple things like walk the dog, which isn’t always hard to do but during the summer it’s not so fun. While walking the dog I start off fine, but while I continue to walk the dog in the heat I get another episode of POTS. It’s hard being a teenager with POTS.
“I usually try to run to the bathroom and take a break while my friends are still having fun. “
The Invisible Diaries
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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.
A clinically-focused, oral alternative, to IV hydration & vitamin therapy for convenient use at home or on the go. 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
whoweplayfor.org/
WHO WE ARE We all have someone or something that motivates us- it's who we play for. WWPF represents every young person who lost their life to sudden cardiac arrest. Our fight is to ensure that other families, teams and communities will never know that pain. Who We Play For brings affordable, efficient and non-invasive heart screenings to communities across the country.
OUR MISSION To eliminate preventable sudden cardiac death in the young through affordable heart screenings.
OUR VISION To inspire & empower schools, sports clubs and communities to provide heart screenings for every student athlete, and student; no matter their level of athletics, socio-economic status or geographical location.
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Service Pet Feature: Essie @crippled.fox
What is your service animal’s name? How old are they? Where are you from? What breed? Her name is Essie, short for Espresso! Her birthday is 11/7/17, and she is a red standard poodle from Tennessee. I’m originally from New Hampshire but I’ve been living in Florida for over 3 years now. What is your diagnosis and how long have you been diagnosed? I have Ehlers Danlos Syndrome, along with POTS, fibromyalgia/chronic fatigue whatever, cervical syringomelia, ADHD, anxiety, depression, etc. I didn’t know my symptoms were abnormal until I was 18, so I wasn’t diagnosed with anything, but I began to learn what was going on when I was around 19 and since. In what way does your service animal provide services to you? Essie is a mobility support and medical response service dog. She does forward momentum pull to help me walk longer, and counter balance. She also does retrievals/ picking up items that I drop or point to as small as a dime which is very helpful in limiting the amount I have to bend down. Essie also does crowd control in where she circles around my body to give me space from people, and does a stationary block for similar reasons. She does behavioral interruptions for repetitive motions, mostly itching when I don’t realize I’m doing it. She also performs deep pressure therapy on different parts of my body to alleviate pain. She likes to push buttons that open doors! We’re currently building up duration for her holding/carrying items for longer periods of time. Tell us about a proud moment: There’s plenty! I remember the first time I took Essie out on her own at around 6 months old. This was when I wasn’t sure if she would end up working out as a service dog, but that was the day she proved herself to me. After that, I started taking her out more consistently and she took wonderfully to her job!
How long did it take to train your service animal? Did you train Essie or did you go to an outside source? I got her as a 9 week-old puppy and did all her training on my own. I had worked with other service dog and sport dog trainers prior. Once she was up to par with the ADA’s definition of service animal, I discontinued her “in training” label, but we still actively train to improve on current skills and she loves to learn new things. So while she was legally considered “fully trained” at around a 18 months, we still train! What were the struggles of training? How long did it take to train? A lot of the struggles of training have to do with my varying energy levels. Essie is smart, she learns quick and enjoys it. Being consistent is just...tough. What advice do you have for those who are considering a service animal? If owner training, then you have to keep reminding yourself that you’re investing energy now for help later. Understand that dogs are dogs before anything else. Get a good puppy from a good breeder, don’t stress it out. Training must be a paced game. No one’s dog on social media is as great as their handler’s make it out to be. Know what behaviors are unacceptable, it’s kinder to wash a dog that shows discomfort than to force it to work. What are common misconceptions? My service dog is, first and foremost, a dog. She does get pet, even strangers pet her sometimes. I only tell you not to because she is to be in a calm headspace when working, and the added excitement is harmful to her focus. (Also, she's a dog not a carpet!) Share some fun info about Essie: Essie is hilarious, and she moves like a horse. She makes weird noises and likes you to make them back to her. She punches you when you blow on her face—and sometimes when we’re out she’ll get creative in order to task. Is she bored? She might take something off my lap and drop it so she can pick it up. Or she’ll interrupt whatever I’m doing (typing, etc.) by shoving her nose into the situation. Tell us about you! I love to make things and learning about anything that fascinates me. I also have a wicked dry and dark sense of humor, so I can definitely come across as...quite strange!
Page 9 The Invisible Diaries
Mental Health Feature: Bipolar II with Jade
Jade is from Cocoa Beach Florida, previously New Orleans, and she is diagnosed with Bipolar II Disorder. According to Mayo Clinic, this diagnosis is quite common with approximately 200,000 US cases per year. Depressive symptoms of sadness and hopelessness and hypomanic symptoms like elevated and irritable moods and leave the patient feeling guilt, impulsive behavior, lack of concentration, racing thoughts, self-harm, euphoria, mood swings, anxiety, and loss of interest. Bipolar I is similar to Bipolar II with mood cycles, but in Bipolar II the "up" moods don't reach full-blown mania and the patient suffers more often from episodes of depression. Jade was diagnosed at the age of 14, and according to WebMD, most people are in their early teens or early 20s when symptoms first start. Â Jade had a hard time accepting her diagnosis, as most do, and she felt like she was being labeled.
Jade is a local community artist. She loves to organize meet-ups with other creative individuals to help inspire herself and others. Humanity is her biggest inspiration as she loves people and the planet. She is constantly inspired by nature and other artists. 1-800-273-8255 National Suicide Prevention Lifeline
@ladyluciferxx
What have been your struggles and how do you manage? Jade: My depressive episodes are hard to handle at times. They can last anywhere for 1 week to 3+ months. There is really no telling how long an episode can last. I typically just allow myself the space to feel the emotions I am going through. I write down my thoughts and then will counteract them with positive responses. I try to remind myself that the emotions I am feeling now are just temporary; I won’t feel them forever, even though sometimes it can feel that way. I also like to stay active: doing yard work, painting, walking and yoga. Busy hands and a busy mind are really important. Even on my worst days when I can’t leave my bed, I try to at least write poetry or draw something out of nature. What is self-care to you and how do you prioritize your mental health? Jade: Self-care to me is remembering myself as the badass woman I am. When the mania is over and the depression hits, it's extremely easy to forget how great you are. I keep little reminders around my home for this. I have a cute sign on my alter that says “it’s time to be happy”. My mental health is part of my daily life. I believe it all starts with a solid routine, something you can be consistent with everyday. I take multiple organic tinctures throughout the day, as well as having a skincare routine. I’ve noticed when I fall off track of my routine, my depression tends to sneak back up. What advice do you have for someone who is struggling with mental illness? Jade: Seek help. Therapy is amazing and I recommend it for everyone. Even if you don’t have any diagnosis, it’s amazing to talk to someone who doesn’t know everything about it and won’t judge you. Take medication if that is something that helps you. There is no shame in taking them and sometimes we honestly cannot function without them. Always, always remember who you are without the episodes. Don’t allow your disease to define you, define who you are as a person with this disease.
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Physician Spotlight:
Paldeep S. Atwal, MD, FACMG, FRCP(UK), FRCP(Glasg) Specializes in Clinical and Biochemical Genetics Located in Jacksonville, FL
Contact: info@atwalclinic.com Phone: (904) 364-9985 Fax: (650) 897-5097 Address: 4110 Southpoint Blvd Suite 118 Jacksonville, FL 32216
https://atwalclinic.com https://www.facebook.com/AtwalClinic https://twitter.com/AtwalClinic https://www.instagram.com/atwalclinic https://www.youtube.com/channel/UCffZDBcvf-vFRsT7k9GppTQ https://atwalclinic.com/blog
Please tell us about your specialty and what the clinic has to offer: Medical Genetics is the practice of understanding the effect of DNA differences on the body. Dr. Atwal understands the long diagnostic journey that many patients suffer through and has devoted his life to the research and care of these individuals. Atwal Clinic offers inperson as well as video consults to reach all across the country helping patients receive the care they need, where they need it. Genetic testing can also be done remotely. Particular areas of expertise include: Ehlers-Danlos Syndrome / Connective Tissue Disease, Inborn Errors of Metabolism (e.g. PKU), Mitochondrial Disease (e.g. MELAS, MERRF), and Lysosomal Storage Disease (e.g. Gaucher, Fabry, MPS, Pompe). Dr. Atwal is expertly trained in all areas of genetics, including cancer genetics, cardiac genetics, neurogenetics, pediatric genetics, predictive/preventive genetics, prenatal genetics, and adult genetics. Provide a little background, credentials, and additional information: Dr. Atwal is a board-certified clinical and medical biochemical geneticist. He formerly served as Mayo Clinic’s Medical Director for the Center for Individualized Medicine and Clinical Lead for the Department of Clinical Genomics at the Jacksonville campus. He completed his Residency in Medical Genetics at Stanford University and Fellowship in Medical Biochemical genetics at Baylor College of Medicine. He is a fellow of both The American College of Medical Genetics & Genomics and The Royal Colleges of Physicians of the United Kingdom. Dr. Atwal’s clinical interests include clinical genomics, undiagnosed diseases following lengthy diagnostic odysseys and inborn errors of metabolism including mitochondrial diseases. Through his work, he has helped discover two new genetic connective tissue syndromes that results from defects in the FLNA & AEBP1 genes, helped develop an untargeted metabolomic screening test for inborn errors of metabolism, and has published extensively on human genetics with over 80 publications to date. What questions should a patient ask their physician? - What are next steps in my healthcare plan? - Do need to start or stop doing anything? - Should I get input from other specialists? - Who will manage my condition long-term? - What does this diagnosis mean for my family, if anything? - Is it possible some of my prior diagnoses are incorrect?
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We interviewed Deidra from the Alzheimer’s Association Central & North Florida Chapter. The chapter covers 43 counties spanning from the Florida Panhandle across to the First Coast and down to the Space Coast. They have regional offices in Pensacola, Tallahassee, Gainesville, Jacksonville and Orlando. Formed in 1980, the Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research.
What is the organization's Mission Statement? The Alzheimer’s Association leads the way to end Alzheimer’s and all other dementia – by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia. What does the organization provide/do? We provide education and support to all those facing Alzheimer’s and other dementias throughout our community, including those living with the disease, caregivers, health care professionals and families. We are also committed to advocating for the needs and rights of those facing Alzheimer’s disease and advancing critical research toward methods of treatment, prevention and, ultimately, a cure. Additional information you wish to share: Our 24/7 Helpline is available day and night at 800.272.3900. Staffed by caring dementia specialists, our trained and knowledgeable staff are ready to listen and can help you with referrals to local community programs and services; dementiarelated education; crisis assistance; and emotional support. We can also provide you help in your preferred language using our translation service. Website: alz.org/cnfl
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Page 15 The Invisible Diaries
Tyler Farnham's Close Call Skydiving Accident
Tyler Farnham is a surfer and lifeguard where he lives currently in Bali, Indonesia. In April of 2009 for his 26th birthday, Tyler woke up after 5 days of being in a medically induced coma. Tyler is from Cocoa Beach, Florida and at just 5 days prior to waking up from a coma, he went on a routine skydive. At an altitude of 3,500, his parachute malfunctioned, sending him spiraling to the ground. Tyler's last thoughts were, "I think I am going to die."Tyler had a long road ahead, as he was left with a shattered (compound) right femur fracture, left femur fracture, right ulna fracture, right humerus fracture, two shattered condyles, broken mandible, skull fracture, and 9 broken teeth. He has permanent metal rods, pins, and screws in his legs, arm and jaw.
What is your main struggle with your illness? Tyler: Currently, I am limited as to what I can do physically. Although I can still surf. What is a common misconception related to your illness? Tyler: Unless I speak about it, you would never know this has happened to me.
What helps you? What do you do to take care of yourself? Tyler: In the states, CBD and THC are extremely helpful. Although that is illegal here in Indonesia. So, Kratom is helpful, but mostly daily exercise and stretching. How is your mental health affected and how do you manage that?
Tyler: Every day is work, just getting out of bed and starting the day. I manage by not giving up and telling myself it could be much worse, and overall I am one of the lucky ones.
What is a scary/difficult moment in your life and what was the best? (In regards to your condition)
Tyler: Anytime I sprain / tweak my knees surfing it is a scare, it happens every few months. The best moments are having great surfs, which is often. Give us is a fun and interesting blurb about you (not related to your illness): Tyler: I would say that almost losing my life from a skydive gone wrong was the best thing that has ever happened to me. The outcome has left me with two published books and nearly 8 years of world travel. What advice do you have for others who are recently diagnosed or recovering from an accident?
Tyler: Never give up, and focus on the small wins every day; don't lose focus or hope. What would you like others to know about your illness? (to family, friends, coworkers of someone with your condition) Tyler: Just to stay positive and thankful to be able to do whatever it is you can and enjoy doing. For me, that would be surfing. @tylerfarnham tylerfarnham.com
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Artist Feature: @rana2.0
Hey, I’m Rana! I’m 25 years old and I was born and raised in New York. I am a black disabled artist. I mainly work with digital art on my iPad and create art about chronic illness, mental health, and self-love. Here’s a little bit of my story: I was gifted with the talent for art all my life. However, I never took it seriously until I became disabled in April 2019. After dealing with chronic burning pain in my knees since I was a teenager and not being taken seriously by doctors or loved ones, I was diagnosed with Osteoarthritis in both of my knees at the age of 24. Shortly after, I was diagnosed with Fibromyalgia and PCOS (Polycystic Ovary Syndrome), with a possible Endometriosis diagnosis. Throughout my whole life, I always felt like something was “wrong” with my body. I always felt like it wasn’t running how it was supposed to. When I was 18, I was diagnosed with major depression and extreme anxiety. I had a pretty rough childhood. I was surrounded by poverty, abuse, and trauma. After being diagnosed with mental health issues, my doctors started to blame my mental health for my physical health. They dismissed my pain and said that it’s all in my head or it was just from my depression. I knew there was something more. The last few months before my diagnoses, I was in and out of urgent care, calling out of work, and dealing with a new crazy symptoms everyday. That’s when I got my diagnoses and had to let go of my dream job as a chef. I worked in the food service industry since I was 17, was in food management, food service, and I was even a line cook training to be a chef. With that, I got back into art and suddenly it became a huge part of my life again. Art, my loving partner, and this beautiful community of fellow chronic illness is what has kept me going every since I was diagnosed with chronic illness last year. MY PAIN IS REAL. I’ve been told so many times before that my physical pain isn’t real, that it’s all in my head. Especially as a black girl, POC, doctors are more likely to dismiss me and refuse certain medications and treatments etc. I’m here to tell you f*** what anyone says. Your pain is real. Whether it is mental, physical, emotional, your pain is valid and true and you deserve to heal. It’s okay to ask for help, it’s okay to reach out, it’s okay to see a therapist. Sending love to all my fellow chronic illness warriors. Your pain is real and valid. Whether you have a diagnosis or not. Whether other people can see it or not.
I’m trying. I’m trying my best everyday to keep it together. To take care of my mind and body the best I can. Chronic illness is tough psychically and mentally. Holding it together everyday is tiring in itself. Sometimes I’m not so great at hiding my pain. And it shows I have chronic illnesses for where there is no cure, I think I can be moody once in a while.
I’m trying to instill this one in my brain. Learning to listen to my body and honor it’s needs. Resting and taking care of yourself is “productive”, too. Let’s make resting and taking care of yourself the new “norm” okay?
It’s okay to feel a lot. We are human, after all.
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Five Facts About Meniere's Disease 1- In 1861, French physician Prosper Meniere theorized that episodes including vertigo, tinnitus, and hearing loss came from the inner ear rather than coming from the brain, as was believed at the time. Once the idea was accepted, the name of Dr. Prosper Meniere began its association with this inner ear disease and with inner ear balance disorders in general. https://vestibular.org/menieres-disease
2- Meniere's Disease roughly affects 615,000 people within the United States, which makes it a relatively rare disease, according to statistics. Only about 0.2 percent of the population in the U.S has it. https://www.american-hearing.org/disease/menieres-disease/
3- Unfortunately, a cure for Meniere's disease does not exist. A number of treatments can help reduce the severity and frequency of episodes related to vertigo. But, there aren't any treatments for the hearing loss. https://www.mayoclinic.org/diseases-conditions/menieresdisease
Leah Cavazos @tarotbyleah1111
4- Meniere's disease is a disorder of the inner ear that can lead to spells and episodes of vertigo, hearing loss (temporary and permanent), and tinnitus, just to name a few symptoms. Meniere's can affect only one ear, but it may affect both ears as you get older. Meniere's disease can occur at any age, but it usually starts between younger to middle-aged adults. https://www.mayoclinic.org/diseases-conditions/menieresdisease/symptoms-causes/syc-20374910 5- Meniere's disease is becoming a more widely known Vestibular Disorder and there are now many resources and support groups that offer valuable information. Here is a very popular and useful link to the "Ultimate List of Meniere's Disease Links and resources" https://www.mindovermenieres.com/the-ultimate-list-ofmenieres-disease-links-and-resources/
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Published by Stel Bailey Fight For Zero | www.fight4zero.org
All water contains some level of impurities, but toxic doses of chemicals can cause health effects. Millions of people are exposed to unsafe drinking water each year. Just because you cannot see, smell, or taste a contaminant doesn't mean it's not there. Industrial dumping, pesticide runoff, and weak federal chemical safety laws risk our water quality and have lifelong consequences for your health. Harmful chemicals can be lurking in your tap water by entering pipe bursts when existing mains are repaired or replaced, potentially leading to the introduction of contaminated soil or debris into the water system. Additionally, when pipes corrode, they can release toxic lead into the local drinking water. A common misconception is that you can remove toxins from water by boiling it. Boiling kills most types of parasites, bacteria, and viruses but increases concentrations of other harmful contaminates due to the evaporation of water. Aging stressed or poorly maintained water infrastructure can cause the quality of piped drinking water to deteriorate below standard levels. Some water systems have contaminants that aren't regulated. For instance, dangerous perfluorinated chemicals are pouring out of faucets in homes across the world. Still, because they aren't regulated, they don't show up in violations of water quality standards put in place to protect health. Clean water is essential for our health; it helps us stay hydrated, aids in digestion, helps with nutrient absorption and helps fight off illness. We need safe water for drinking, cooking, and general hygiene. Exposure to some chemicals does not always produce disease, but chemicals can build up in the body over time causing health effects such as chronic diseases and cancer. Chemicals that can harm your health include disinfection byproducts, solvents, pesticides, radium, and minerals like arsenic. Children are especially at risk of a range of diseases because they are likely to have higher exposure to drinking water contaminants. One definite way to tell if your water is contaminated is by testing it. You can do this by using an at-home kit with strips that change color to indicate the presence of various contaminants in your water. These tests can be ordered online or bought at your local hardware store. You can also hire a trained technician to come to your house and perform the sampling through a certified lab. If poor-quality tap water is a concern, you can invest in a water filter rather than bottled water, which contributes to our plastic waste and is pumped unsustainably from groundwater. When searching for filtration products, look for the NSF mark, an independent testing laboratory that performs comprehensive testing and certification for filtration products. It can be challenging to determine how much of a chemical is too much because the amount of water someone drinks varies from person to person, and certain groups are more at risk than others. While there are drinking water standards, there are many contaminates where little is known. We can protect drinking water sources by preventing pollution like sewage waste, fertilizer, pesticides, gasoline, and other substances. You should also be aware of other possible causes of contamination in your community, such as industrial projects. If contaminants are found to exceed water quality standards, consult with a local expert such as your local health department, public water system officials, and local geologists. Stay hydrated while minimizing the exposure of harmful chemicals. The more you learn about these issues, the better choices you can make for your health.
Continued...
10 Toxins to Keep an Eye On for Exposure: Arsenic: Used in a multitude of industrial processes, long term exposure to inorganic arsenic through drinking water can lead to skin cancer, lung cancer, and bladder cancer. Arsenic is a confirmed carcinogen, and immediate poisoning can cause vomiting, abdominal pain, and diarrhea. Cyanobacteria: Bacteria that comes from the rapid growth of blue-green algae and endangers drinking water supplies across the world. When ingested, cyanotoxins can attack the liver, create abdominal pain, vomiting, diarrhea, inflamed and bleeding liver, pneumonia, or kidney damage and might even promote tumor growth. Some cyanobacteria produce unpleasant tastes and odors, which results in water treatment facilities increasing disinfectant byproducts. Dioxins: Released during combustion, such as the burning of hazardous waste, forest fires, cigarette smoke, and burning oil and coal. Long-term exposure can affect the immune, nervous, endocrine, and reproductive system. Disinfection Byproducts: Chemicals used in drinking water disinfection processes, such as chlorine, trihalomethanes, and haloacetic acids, are added to drinking water for purification, despite it not being completely safe. Chlorine is a reactive chemical and bonds with water, including the water in your gut. A mixture of these chemicals, forming byproducts, may damage cells and increase cancer risk. Fluoride: A waste byproduct from the phosphate industry, fluoride, is an artificial chemical added in drinking water supplies to prevent tooth decay. Fluoride can collect in parts of the bone, which might affect the risk of osteosarcoma and can be an endocrine disruptor harming the thyroid gland. In June 2020, a federal lawsuit in California went to trial and could change the longstanding practice of adding fluoride to drinking water supplies. Lead: A heavy metal that can leach from lead pipes and plumbing fixtures. It can cause an increase in attention-related behavioral issues, stunted growth, autism, and neurological problems in children. Lead is toxic to almost every organ. Mercury: Mercury vapor can linger in the atmosphere and ride the winds halfway around the globe. It can cause brain damage, cognitive disability, headaches, weakness, tremors, mood swings, memory loss, and skin rashes. Nitrates: A widespread contaminant due to their use in fertilizer. It is a growing problem in many agricultural areas and places where there is sewage pollution from livestock manure and human sludge. Nitrate can be harmful to pregnant women and increase the risk of colon, kidney, and stomach cancer. Pathogens: Bacteria, viruses, and parasites that cause diarrhea, vomiting, cramps, nausea, headaches, and fever can find a way into water supplies inadequately treated to kill germs. PCBs: Polychlorinated biphenyls are chemicals used for industrial purposes such as insulation, oil, paints, adhesives, and fluorescent lights. PCBs were banned in 1979 but are still present in landfills. They break down slowly and infiltrate the environment. Ingestion of these chemicals can cause cancer, nervous, and endocrine system issues.
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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, even if it doesn't seem likely. No one should ever wait their entire lives to get diagnosed and treated. She is currently a student at EFSC working on getting her Bachelors in Biomedical Sciences.
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Product Review: Hydrojug
If you have a chronic illness, you know that the summer heat can create all sorts of challenges for your body. Extra daylight means extra time for the sun to be out to play, causing or exacerbating an array of potential health problems. Many of us have a plethora of tools in our arsenals to combat the heat based on our individual needs, and for me, staying hydrated is one of them. That’s where the Hydrojug comes in. I love drinking water, but let’s face it, sometimes making sure I am drinking enough requires a focus that I just don’t always have readily available (thanks, brain fog). I needed something that could not only meet my daily intake needs, but be portable, look good, and most importantly BPA-free. After searching the web for hours, I stumbled across thehydrojug.com. Let’s just say, at first glance, I was more than excited to try it out. After some research and reading through their very helpful website, I decided to go ahead and purchase a bottle, a sleeve, and their recommended straw. Upon unboxing, I was first impressed with the size. All of their bottles are a 1/2 gallon, which means only filling it up twice to reach my daily goal. The bottle itself was pretty light-weight, and the wide-mouth lid made it super easy to wash and add big ice cubes to, so that was a plus! There was no weird plastic smell thanks to the food-grade plastic they use, which also makes it dishwasher-safe and the neoprene sleeve was easy enough to slip on. But, I have to say the straw is my favorite! Not only is it comfortable to drink out of and easy to clean, but thanks to a flexible silicone bottom, you can close the lid tight and not have to choose between drinking out of a straw or a potential spill when you’re carrying it out and about. Major extra points! After 6 months of daily use, I have to say that it definitely checks all of my required boxes. So much so, that I have since ordered another bottle and sleeve. It’s a little on the heavier side when it’s filled all the way up, but the handle is comfortable, easy enough to hold, and it gets lighter as you drink out of it. Also, the bottle does sweat a bit if you add ice, but the neoprene sleeve helps with condensation and it has a shoulder strap to make it easier to carry. Bonus: it has two pockets on the side for phone and keys or ID. All in all, I love my Hydrojug and can’t recommend it enough if hydration is one of your summer goals or tools to help beat the summer heat. If you decide you want to try it out, you can use code ‘AutoAdvo10’ at checkout for a 10% savings on your order. Make sure to tag me @theautoimmuneadvocate on Instagram so we can be hydration accountability buddies!
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Q&A
with Misti Blu Day McDermott @MISTIBLUDAY Misti Blu is a health advocate and blogger, and has been diagnosed with Ehlers-Danlos Syndrome. She has had 4 cardiac ablations, open heart surgery, a pacemaker, and many other surgeries. You can also listen to this Q&A on our season 2, episode 1 podcast.
Q: What is the most misunderstood thing about having EDS? A: Ehlers-Danlos Syndrome is very misunderstood and very debilitating. With autonomic dysfunction, severe chronic joint pain, digestive issues, and many other symptoms, EDS can be very debilitating. It is misunderstood because many people and even healthcare providers just assume it is only about hypermobility, with the exception of vEDS. We are called zebras because in the medical field, they are trained that if they hear hooves, think horses not zebras.
Q: I have read there are many different types of EDS. Can you have more than one type? A: It is said to be extraordinarily rare, according to The Ehlers-Danlos Society website. If you inherit one type of EDS from one parent and another type from the other parent, it may theoretically be possible, but not likely. Usually you have one type.
Q: What are the first signs pointing towards EDS and how can one focus in on those to speak with doctors and figure out a diagnosis? A: In my opinion, the first signs start early in life, though this may vary with each patient. For me, I ALWAYS had health issues, from cardiac, digestive, chronic pain, and of course hypermobility. All throughout my 20s I kept asking doctors why I would have these health issues and if it was all linked to something. Instead of getting answers they just documented in my medical records that I had “lot of unusual symptoms.” This is why education, awareness and advocacy are so important. I image I would still be wondering today if I hadn’t started researching. A geneticist is who you need to see for a diagnosis. Criteria is more than just the Beighton Scale (hypermobility) but also family history and your health history. We have a list of resources on our website.
Q: What are the alternatives treatments you have used over the years and how much have they helped? A: Because I have so many health issues, I would likely be on 15-20 different medications if I took everything that was prescribed to me. I do take 3 different heart medications, all low doses and a combo that works well for my multiple issues. For everything else, I take CBD oil. I like a low dose THC Indica for severe pain days or a 1:1 CBD:THC for regulars days. I also use Banana Bag for dysautonomia, which helps me to require less IV infusions. I take vitamins every day to prevent anemia and build my immune system with C and D. I take a bioactive methylated folate and B12 (for MTHFR mutation). Last but certainly not least, I have a strict diet. I cannot have preservatives, dyes, artificial ingredients, processed food, aged or fermented food or high histamine food to reduce Mast Cell reactions, which include tachycardia, migraines with visual disturbances, low blood pressure, and disorientation.
Q: Like you, I have significant cardiac issues. What would you say to encourage younger individuals with these issues? A: Use your frustrations and turn them into productivity. Education empowers me. Having many hobbies keeps my mind busy and occupied. Understand the stages of grief (denial, anger, depression, bargaining, and acceptance). Understand that some days are not going to be good, and that’s okay. Just try not to live in those dark places. Do as much as you can to give your body a fighting chance: nourish your body, self-care, rest, hydrate, healthy food, and movement both physically and mentally. Challenge yourself.
“No other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos Syndrome” – Professor Rodney Grahame
5 Simple Ways to Refresh Your Daily Routine By: Amber Traven @theautoimmuneadvocate Summer is the season of slowing down, sitting back, and unwinding from the winter months. Schedules free up, activities are moved outside, and that balmy, breezy air almost whispers that it’s a time to do things that allow you to rejuvenate and recharge. It also just happens to be a great time to check-in with yourself and update your daily routine. Here are 5 simple ways to breathe some new life into your everyday groove and make the most of your summer. 1. Take a break from technology.This may seem like a no-brainer, but think about how much time we’ve spent on technology since the world got turned upside down from the Pandemic. Many of our daily routines have moved strictly online. It’s been a lot of digital stimulation and I’m sure our eyes and our mental health could use a little vacay. Technology is such an amazing tool to keep us connected, but sometimes it’s okay and necessary to hit pause. 2. Create a new morning routine. What better way to tell your mind and your body that a new season in here than by creating a new routine for yourself? It doesn’t have to be elaborate or over-scheduled (cause hey, the whole point is that summer means less scheduling, right)!? It just has to be different. Change how you start your day, and everything will seem new and fresh again. 3. Keep a daily journal. Write your thoughts, track your daily activities, color, collect flowers and tape them in, draw, paint, print favorite photos and stick those in. The point is to create every day so that at the end of summer, you can reflect back and see all of the beautiful memories you’ve made. 4. Change it up and then check in. Do you normally eat your largest meal at night? Why not switch it with lunch or breakfast and then see how you feel? Do you end your day with the news? Try turning it on in the morning instead, and reading something uplifting night. Does that one shift help you sleep better? Small, subtle changes in your daily routine help exercise your brain’s neuroplasticity and can actually increase your creativity. 5. Re-arrange a space, no matter how small. Do you see the same old picture or poster when you wake up? Try moving it around. How about your kitchen? Is there a drawer that needs attention? Or nook that’s prone to clutter? Switch it up, clean it out and enjoy a new perspective on an old space. If things get stale, switch it up again. It’s your space. Get creative!
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