MAY/JUNE 2021 | ISSUE NO.3
h e a l t h
c o l l e c t i v e
RHEUMATOID ARTHRITIS & SELF-CARE | PANCREAS TRANSPLANT - BRANDON MOUW
Blu Dream Health Collective
Where is Wicket?
02 03 05 09 11
The Publisher's Note Ehlers-Danlos Awareness Ashes to Amazement My Auditory Overwhelm I'm Still Kicking - Brandon Mouw
15 17 20 21
Poems Self-Love & Rheumatoid Arthritis Instagram Sydney's Story
LETTER FROM THE PUBLISHER EXPLORE Producer/Creator: Misti Blu Day McDermott @mistibluday
The unofficial theme to this issue is: explore. Life as we know it is always changing, leaving us feeling unsteady and a little lost. Oftentimes we let fear trap us like quicksand. We feel stuck and afraid to take another step. For these next two months, I challenge you to explore. Take the steps you need to get unstuck. Take the risk. Open your mind to the unknown possibilities and opportunities that await. Challenge yourself. Try something new. Don’t be afraid to fail. Failure is only but a lesson. Make sure to subscribe to the blog at bludreamhealth.com so you don’t miss out on new magazine issues, podcast episodes, and other exciting content. If you’re interested in being a contributor or know someone who might be interested, please email me at: bludreamhealth.com, subject line: “Contributor.” Here’s to continuing to build a world together with education, compassion, and equality.
Contributors: Jessica Cassick @imaginewepublishers Effie Koliopoulos @risingabovera Shelley Taylor @shelleytaylor121 Brandon Mouw @brandonmouwofficial Emily Natani @emilynatani3 Sydney Kendrick @clinicallychronically
Cover Art: Photo by @type1wild of Brandom Mouw @brandonmouwofficial
Connect With BDHC
On The Cover: Brandon Mouw Page 11
Blu Dream Health Collective
Ehlers-Danlos Syndrome Misti Blu Day McDermott
May is Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder Awareness Month. I always knew something wasn’t right. I was told “it’s all in your head,“ or “you’re a hypochondriac,” and even the most common, “it’s just stress.” They were so wrong. Because of the lack of awareness, I spent my entire life, up until my 30s, without proper care and treatment. The Ehlers-Danlos Society is a great source for information, education, resources, and the latest in research. Thank you to Rockledge, Florida for the proclamation.
I used to feel bitter and angry for being dismissed and medically neglected, and frankly for the difficult life I was dealt. The best thing I have done for my health, both mentally and physically, was changing my mindset. I traded my frustration for fuel and my anger for passion.
Blu Dream Health Collective
To address health stigmas, medical bias, healthcare inequality, mental health, and other important topics with health advocates, authors, activists, and healthcare providers.
Podcast - Publication - Community @bludreamhealth bludreamhealth.com
Ashes to Amazement
By Jessica Cassick - CEO and Publisher at ImagineWe Publishers Salutations, my name is Jessica Cassick, and I hail from Western New York. After submitting a piece in the last edition of Blu Dream Health Magazine, I was given this amazing opportunity to produce a column surrounding my unique experiences in this life, my education, and the research I am working on as a Doctoral Candidate. Let me tell you about myself! In my thirty plus years on this earth, I have been through my own fair share of trauma, pain, and loss. From ages ten to sixteen, I was molested by someone close to my family. It was never so terrible that I had a concrete understanding of right and wrong, but it was enough to erase my self-esteem straight from this plane of existence, sending me down a negative slope too early towards sexual activity with my first real boyfriend, who ended up taking advantage of me with his best friend (whom I thought was a friend of mine) . I spent years trying to force myself to believe what happened was my choice, because the opposite scenario continued to throw itself against a door in my head...and I refused to open it, invite it in, befriend it, and get to know the pain and devastation it left behind. Beginning in ninth grade, my mother forced me to be homeschooled. As an extravert, this was really hard for me. For ninth until tenth grade she sheltered us as much as she could until we were suffocating. At the age of eighteen, my family suffered a house fire. I had spent my teenage years revolting against my mother, and screaming at her with a rage she had no idea how to handle, and I had no idea why...so I couldn’t stop.
I used the house fire as a way to leave home, and move out. I stumbled into my second toxic relationship with an alcoholic before I knew what alcoholism really was. I tried to be small, and fit into that bottle. I tried to be enough, to help, and to be there as I watched alcohol destroy this man. Things I never thought he’d say or do, were being said and done. The only thing I truly had after the house fire was my car, and the day he tried to steal my car, I collapsed onto his bedroom floor shaking and in tears, but he was too drunk to understand my tortured heart, and too deep to his disease to accept me. I gave him an ultimatum; me or the alcohol, and he chose vodka. I spent years trying to understand my feelings, hide from my experiences, run from my past, and I succumb to not even being enough in comparison to a mere liquid. My self-esteem felt like it shot deep into the negatives. I felt like I was a hollow soul with no idea who I was, what I was supposed to be doing or feeling. I felt worthless, and empty. I craved attention, no matter what kind, to prove in a tangible way that I existed, and I wasn’t completely invisible. Out of this clearly toxic, haunted struggle introduced my abuser; the most sadistic psychopath I’ve ever met.
Two months later I was in the car accident that left me permanently disabled, in horrific pain from my neck and back injuries, and utterly exhausted. Three months later I was pregnant. I was determined to be “the one that could change him.” I knew I could be “different.” I thought I “could help him.” Then he held us hostage when our son was still an infant, and this part of my life, and every single thing leading up to this point in my life was over. I walked away. I never looked back.
I was disabled, a single mother of a brand new child in this world. We were homeless. I had no money. I was a high school dropout, with no higher education or job. *** My son is almost ten now. I have founded two businesses, and I am finishing my PhD. I have researched Domestic Violence, written about it, and advocated against it for almost a decade to pave a new path for those coming behind us. My hope for this column is to share my unique perspective on trauma, chronic illness, entrepreneurship and academia. I hope to give you inspiration, lend some of my determination when you need it most, and help you to find the inner resilience and fortitude we all have access to inside us. I hope that as you read this column, you learn not only something about me, but about yourself, and about this world that we all share space in.Though my life has never been easy, I have learned so many valuable lessons. Through every misfortune, and trauma, I have been able to strategically turn the ashes of my life into amazement. People have responded exceptionally, I hope you do, too.
of Blu A book written by Misti Blu Day McDermott, sharing her life with chronic illness and trauma. "Some flowers bloom in the dark. " Available August 2021 Subscribe to mistibludream.com for updates. Published by ImagineWe Publishers
Use promo code: BLUDREAMHEALTH to save 10% at checkout! mistibludream.com/shop @WildlingApothecaryUS
My Auditory Overwhelm by Shelley Taylor
The tension is mounting from all the noise. I feel like I’m on the verge of my limit, so let me try to explain during the blessed intervals of relative silence between dishwasher cycles. I can hear and differentiate so many household sounds simultaneously, it can contribute to novel anxieties, meltdowns or burnout, and makes the concept of a sensory diet pretty intriguing. It is astounding how many things I can hear. There’s my daughter’s sound machine’s sea gulls cawing and ocean waves crashing; there’s the hum of the refrigerator’s compressor and the air conditioner’s bass whistle through the ceiling vent; there’s the rhythmic thumping of the sheets balling up tighter and tighter in the dryer, which is getting louder with each rotation; there’s the fan whirring above my head; there’s the sound of today’s horrific news directly in front of me, which I was desperately trying to focus on more than any other sound; there’s the clicking of my pen as it lands on and leaps from the paper as I’m writing these words; there’s the clip-clopping of my pit bull’s claws on the ceramic tile floor as she makes her way toward me and then her relentless breathing after she settles into her corner of the couch; there are the occasional volume peaks from the garage, where my fiancé is watching a video game stream, joining the cacophony; and finally, like the cherry on top, there’s my very own breathing. Wtf‽
How long have I been licking and tonguing the backs of my front teeth? What is that all about anyway? I can’t help it, and I don’t stop until the instant I realize that I’m doing it. More on this later. My left hand, which has been tugging at the skin and half-massaging the back of my neck, robotically migrates and positions the outer corner of the second finger nail and thumb tip just so to start picking at the spot it has been working for months, where that ant bit me in my hair line. Of course, picking adds yet another sound, but it’s one I control, so it’s helping, instead of adding to the tension. Wow! Hearing all these separate sounds at once is intense, and being able to recognize all the household instruments is maddening. I can’t really turn it off when it happens— the awareness...nor can I turn off the “music,” for that matter. And then, when I’m writing, there’s my internal narrator to consider. Even after all this, there’s still one more thing I can hear; I can’t make out what it is. Can you hear the pressure of clenching your eyelids shut? I can. Snapping back to, my fiancé’s velvety smooth, soothing, “Psst. Leave it alone,” lowers the household record volume a few decibels and simultaneously my left hand flies from my neck and, in doing so, stops my incessant, absentminded scab-picking. “Thanks, my love.” He smiles and nods. His streaming sounds float out of the room, and his footsteps land and then cease, as he heads to the bedroom for the night. The dishwasher cycle changes, and the sloshing and hissing begins again, which turns the household volume right back up. I can hear the pressure of my eyelids clenching shut. I have to shake my head repeatedly, like shuddering through swallowing something bitter. Thank goodness, the news is over. I don’t think I can handle any more noise; not another single sound, before my head explodes. The soul-crushing music box lullaby tune blurts from my phone. Internally, I short-circuit from the sound, and then hear myself giggle. How am I going to sleep with all this noise‽ It’s 8:45pm. It’s bedtime.
I m Still Kicking @brandonmouwofficial brandonmouw.com
About Me: My name is Brandon Mouw and I am 36 years old. I grew up on a chicken ranch in Southern California, am a former high school social studies teacher, and law school graduate. I am now a consultant, author, motivational speaker, and raise awareness about chronic illness. My Story: Type 1 Diabetes was my normal. Since the age of three, I was testing my blood sugar, taking insulin injections, and eating to accommodate an autoimmune disorder. I never felt like I was a victim of my disease, nor did I think it was going to kill me. I’d surely die from something more epic than diabetes. However, while I was on vacation during summer break in law school, I died. Emergency personnel brought me back to life, but that was a shock to me, literally, and hypoglycemia from diabetes was causing me to fall into a coma and die.
Let’s support each other: Instagram: @brandonmouwofficial Facebook: brandonmouwofficial Twitter: @bmouwofficial
Page 12 Blu Dream Health Collective
That is when I realized that my normal diabetes was not normal anymore. It was time for me to stop following the dream of a job, career, life and start doctoring full time to figure out what was causing me to lose control. Soon, diabetes had total control over me and there was nothing I could do about it. After doctoring, undergoing nine surgeries, and losing a kidney, and trying every treatment in the book that could be thought of, I found a doctor who had the solution to my hypoglycemia unawareness: a pancreas-only transplant. The transplant was not covered by health insurance and I would have to fundraise $250,000 when I was told that death was imminent. My new normal is not what I assumed when growing up as a juvenile diabetic—It’s better than I could have ever imagined! You can read more about my journey in my book set to be released in June 2021! It is about what helped make me who I am, how things are not always as assumed, what I had to learn the hard way, discover about myself, and how I made the impossible possible. To know more, listen to interviews and podcasts, and sign-up for my book launch, please visit brandonmouw.com
T1D 31 Years Pancreas Transplant 2018 INSTAGRAM: @BRANDONMOUWOFFICIAL FACEBOOK: @BRANDONMOUWOFFICIAL TIKTOK: @BRANDONMOUWOFFICIAL WEBSITE: BRANDONMOUW.COM
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by Emily Natani @emilynatani3
"My illness doesn't define me." Emily Natani is a chronic illness warrior with dysautonomia, fibromyalgia, postural orthostatic tachycardia syndrome, pseudomonas, MECFS, and vestibular migraines.
How do I look at this repulsive face? Acne and burns I cannot displace Black and blue I cannot erase Fluid filled cysts that continue to encase The shell of me I cannot face How can this monstrous face find a place? Is it me that I can see? I look so different than I used to be No makeup could fix this atrocity That is now ME
If She Only Knew
Tired of being marginalized And told I’ve over analyzed Immune system compromised Fighting to be recognized Diseases must be legitimized Why must I be qualified? Medical care undignified Doctors make you traumatized No way to be normalized How many could have thrived if you had tried?
What do you do When you’re broken in two Grieving the former you The one who flew Freely without thought But then found herself caught Having to forget all she was taught Erase dreams that she thought Would certainly come true If she only knew The torture and suffering that would ensue From invisible illness, symptoms anew Hundreds of doctors had no clue She could surely sue Them for the damages rendered, too If she only knew
Toxic Positivity It’s not negativity That’s afflicting me But the toxic positivity About my illness’s invisibility Dare to question its believability Causing extreme vulnerability Preaching all I need is therapy My infection from severe anxiety Dysautonomia from random mobility That you deemed legality Created your own sensibility That this illness stems from my mentality
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How Self-Love Takes on a Whole New Meaning with Rheumatoid Arthritis
@risingabovera Effie Koliopoulos
In recent years, the topic of self-love has reached an all time high. So much, that tips on how to love yourself can be found nearly anywhere now. When I was diagnosed with rheumatoid arthritis almost two decades ago, nothing about how to love yourself when living with a chronic illness or disability circulated through the world wide web. If you grew up in the 90s and early 2000s, then you would remember the ever so popular message boards on Yahoo or AOL. People poured their hearts out in these spaces, about everything from their break-up woes, friendship drama, and other personal questions they seemed to not be able to get any clear direction on.
II was never one to really ask my own personal questions or comment on others, but I was a silent observer of those who did. I read through the comments of people who were having similar experiences to me, and instantly felt less alone. Fast forward some decades later, and I find it ironic how many in the chronic illness space on social media are finding a similar way to connect with strangers. Though among all the noise, it was hard to filter out what exactly was self-love. Was this something that could be taught, or is it something that has to be learned through lived experience? Some may say it’s a little of both. But when I went to Google, and typed in my diagnosis, the only thing the search engine compiled was images of the elderly, assistive devices, and visible deformities in people’s hands. Seeing all this as an 18-year-old, you can imagine how self-love could seem far-fetched. Coupled with being bullied for years on and off at the heels of my diagnosis, the false narratives of others were too muddled in my mind, to ever think I was lovable.
” To love yourself, you have to know yourself, and accept those parts of yourself.” So here I was, an adult that grappled with her inner child wounds, trying to balance out all the big person things in life. As I kept on keeping on, I found that self-love was learned through some of the toughest lessons of my life. Dating people who did not see my worth or value, led me to realize just how precious and strong I was. It led me to find people who will be there through the chronic illness challenges. But it taught me to rely on myself. It was also found in times of isolation when the fatigue, pain and flare-ups made me enjoy my own company; I have had my own social distancing pandemic before. Lastly, I found self-love through my own self-discovery. It’s as if illness was my gateway to getting to know myself, my passions and purpose on a deeper, and profound level than ever before. To love yourself, you have to know yourself, and accept those parts of yourself. Sometimes this self-discovery comes from a book, a podcast, an article, a well-meaning friend, or even something you read back in the day on the world-wide web. Interestingly enough, the general tips for self-love are not always applicable for the hurdles we experience with chronic illness. An able-bodied person may have an entirely different focus on why they need to cultivate more self-love, than someone dealing with a health condition. Before I landed into my self-discovery phase, I focused on some seemingly trivial aspects of self-love. When rheumatoid arthritis ravaged my body inside and out, giving me visible scars, the self-love journeys my peers were on was not a path I was on anymore. I actually wished I could go back to worrying about my hair not being a certain way, or my body not being like someone else’s.
Page 19 - Blu Dream Health Collective
When your hair falls out, gets thinner, and when you lose weight by way of a medication, it can be very difficult to love yourself. This was not about complaining and comparing what you already have, to what others have. That is the trivial selflove. But everyone is entitled to their own pain. This was about mourning what was taken away from me, without my permission. If you are in constant pain, can’t sleep at night and the brain fog makes focusing on the simplest of tasks hard, loving yourself is the last thing on your mind. The lack of being heard, seen and validated, makes you question your reality and self-worth. Being dismissed by medical professionals on what you’re experiencing, can decrease self-confidence. Without enough confidence, self-love is near impossible. But without self-discovery, you can get lost easily in the self-love advice. I didn’t understand when I was younger, why people would say they would not change a thing from what they had been through, because it has made them into the person they are today. However, today I can say I empathize and agree. What I have been through, has allowed me to love me.
"everyone is entitled to their own pain."
@sophieatypicalzbd Check out the cover entries! Enter next month by following @bludreamhealth on Instagram and adding #AugustBDHC to your photo entry.
"I am so incredibly honored to be a part of the @burdenwecarry exhibition. She is an artist, pioneer, and genuinely compassionate human who only wants to support others.” @emilynatani3
Sydney's Story @clinicallychronically Hi there! My name is Sydney and I’m a model, chronic illness activist and blogger. I’m 23 years old and I have multiple chronic illnesses. Some of which include; Classic EhlersDanlos Syndrome, Intestinal Failure, Mast Cell Activation Syndrome, Cranio-Cervical Instability, Dysautonomia and more. They say, chronic illnesses are like potato chips, you can’t just have one. That definitely falls true in my case. I hope you enjoy your stay and welcome to my journey. My story starts as any other person with chronic illness does. Things were vague at first. I remember back when I was about 12-13 years old, I had started to have some joint problems. Albeit, minor ones at that. I was an active kid and clumsy. So, we attributed things to that. I do remember also having problems with headaches and some foods would bother me. But, not much besides that. Things continued on for a while. I would get repeated injuries from seemingly doing very minor things. I remember one instance where I got up from bed and severely injured my knee. Little did I know, at the time I was constantly dislocating my joints. In high school things started to get worse and more prevalent that something else was going on. Yet, at the time we had no idea. I was in marching band and it would seem that I would get injured much more easily than the other kids at my age. At the age of 14-15 years old I started having symptoms of dysautonomia. Some of those would include, my legs turning purple if I stood for too long, fainting multiple times a week, a high heart rate and low blood pressure. I went to the doctor only to be told that I would grow out of it and I needed to drink more water and eat salty foods. Little did they know, I did not grow out of it. But my dysautonomia did improve slightly from their recommendations. Which increasing fluid and salt intake does help dysautonomia. But that wasn’t the end of everything. My joint problems continued to get worse. I was on crutches or wearing some sort of brace for at least half of my high school career. If not, more so than that. I was known as the kid that got injured easily. The kid that went to the school nurse all of the time. That kid was me.
My gastrointestinal issues really didn’t start taking effect until I was about 15-16 years old. Eating was gradually becoming more and more difficult. I had problems with acid reflux and some foods just did not agree with me. I thought this was normal. But this was definitely the start of my problems with GI dysmotility. I remember hanging out with one of my close friends one night and then throwing up the food I had eaten that next morning. This happened more often than what I would like to admit. Things continued like this for a long time. Years even. I thought that all of this was completely normal. It most definitely isn’t. After high school, things really took a turn for the worst. My health dramatically went downhill. I had my first surgery when I was 19 years old to have my gallbladder removed. I had chronic inflammation and it was abnormally slow according to the HIDA scan we did. The HIDA scan is a scan of the gallbladder to see how it empties bile and how well it works. Mine was abnormally slow indicating problems. Thus, I had it removed. About 6 months later I had my second surgery. It was a scope to my left knee. That revealed that I had arthritis, inflammation and an injury that never healed. All of these were clues to a bigger problem. At the time we thought the worst was over. Yet the worst had yet to come. Food started to become more and more of a problem for me. It was then when I first heard of the term, Gastroparesis. Gastroparesis is where the stomach is partially or fully paralyzed. It wasn’t long until I was admitted to the hospital for a feeding tube for this exact reason. It was a 7-day admission. It was the first time I got introduced into the world of chronic illness. From there, I only continued to worsen. I added to my small list of Gastroparesis, Acid Reflux, Arthritis, and Chronic Pain with Dysautonomia. The cause of my blood pressure dropping suddenly when standing and my heart rate to sky rocket. Dysautonomia is a family of diseases that case problems with your autonomic nervous system. Your ANS controls, heart rate, blood pressure, breathing, and basically everything that your body does without you thinking about it. This also includes digestion.
After adding in Dysautonomia, I started thinking that maybe there was a root cause of this all. One doctor had mentioned some sort of connective tissue disease. That alone stuck with me. So, I did research and I talked with other chronic illness friends. That’s how I came across Ehlers Danlos Syndrome. It fit! It fit perfectly at that. So, to a specialized hospital I went. Over there, it was confirmed that I indeed had Ehlers Danlos Syndrome. To be exact, the classic type. EDS is a group of inherited connective tissue diseases that affects collagen. Collagen is the most abundant protein in the body. It’s in literally everything. Which also means, it affects everything and can affect anything. I was diagnosed in November of 2017. My symptoms really reeled its ugly head in 2011. That is 7 years until I was diagnosed. This, sadly, is a common occurrence for people with EDS. Since my diagnosis, I’ve also been diagnosed with Mast cell Activation Syndrome, Cranio-Cervical Instability, EDS related Hearing Loss, Permanent vision damage from EDS and many more. I’m however, most affected in my gastrointestinal tract. My gastroparesis has since progressed to the point where tube feeds had eventually failed and now, I rely on a central line catheter for my nutrition. I’m also in intestinal failure and am currently working on being evaluated for a small bowel transplant and possibly a multi-organ transplant. My journey hasn’t ended and my battle only has just begun. I hope my story will allow other people to get diagnosed. EDS affects everybody differently, but if I help even one person then I feel like I have done my job. Thank you for joining in on this bumpy road. I hope you will stay on this ride with me. Welcome to my journey. You can find me on instagram @ClinicallyChronically.
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