The Invisible Diaries November/December 2020

THE

e l b i s i DIARIES v In SHEDDING LIGHT ON INVISIBLE, RARE, & CHRONIC ILLNESSES THROUGH EDUCATION, AWARENESS, ADVOCACY, & HEALTH EMPOWERMENT

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@moonsmudged

Volume 1 | Issue 3 Nov/Dec 2020 theinvisiblediaries.com

Teen Warrior Artist Feature Epilepsy Spoonie Spotlight Mental Health

The Invisible Diaries

What's Inside?

Magazine

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The Publishers' Note Teen Warrior: Darren Our Mission Advocate Spotlight: Niamh Dysautonomia 5 Facts: Epilepsy

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Spoonie Spotlight Days With Dani Nicole Artist Spotlight: Natalie Rath Mental Health Feature Episode 16: Cara

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LETTER FROM THE COFOUNDERS Onto The Next Chapter The year 2020 is coming to an end. For once, some of us have blended in with the masks we have worn long before the pandemic. For others, not much has changed as some of us are used to isolation. Despite how crazy this year was, it's been a big year for our community.

The Invisible Diaries podcast, magazine, and blog is launching Spoonie Spotlight, a way to feature fellow chronic illness advocates on our platform.

We are also launching TID Foundation, our nonprofit. 2021 launches season 3 of our podcast.

Lastly, our book will be available in the beginning of the year!

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.”

Producer/Publisher: Misti Blu Day McDermott @mistibluday Contributors: Natalie Rath @moonsmudged Niamh @the_chronic_notebook Tiffany Kairos @tiffanykairos Darren @son_o_darron Dani @dayswithdaninicole Kaitlyn @wildflowers.pnw Cara @mindfully.well

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: @moonsmudged Pages 17, 18 & 19

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Teen Warrior: Darren

2019-2020 was a crazy year for me. I started the year out recovering from a knee dislocation. In January, I had a heart procedure called a cardiac ablation (which is a procedure to scar small areas of your heart that might produce irregular heart beats). For 6 hours after the ablation, you have to stay in bed and not get up. When I could finally get up from the hospital bed, the area reopened and I lost a lot of blood. My luck.

The Invisible Diaries Magazine

“There's positivity everywhere, even in the darkest places. You just need to look for it."

I am 17 years old and it sucks to live with a heart condition, but you get used to it.

Honestly, it is a little annoying sometimes. I got a little depressed when I got quarantined because of coronavirus, since I wasn’t allowed to see my friends. It took me awhile to get out of it, but you just need to find what works for you. Don’t give up on yourself either. Always think about the positive, even if you don’t think it's there.

You’re not alone in the world; everyone goes through something. You know Aang from Avatar once said, “When we hit our lowest point, we are open to the greatest change.”

@son_o_darron

The Invisible Diaries

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Magazine

Our Mission To shed light on invisible, rare, and chronic illnesses through community, education, advocacy, awareness, & health empowerment.

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Who is TID? 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.

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Advocate Spotlight: Niamh @the_chronic_notebook

Hi I’m Niamh and I’m from the UK! I have multiple diagnoses these are: Ulcerative Colitis, an autoimmune condition that causes chronic inflammation in your colon, chronic migraine disorder, dysautonomia where your autonomic nervous system, which controls your fight and flight response, blood pressure, heart rate, digestion and more doesn’t function properly, and PCOS. I ignored my symptoms at first, but eventually I became so fatigued I had to nap all the time, had recurring diarrhea, vomiting, severe abdominal pain and weight loss to the point where my body completely shut down. I couldn’t leave my bed for months. I also started developing chronic migraines at the same time. I was misdiagnosed for a while: told I had IBS, was just stressed, needed to change my diet, maybe lactose intolerant. That was until I finally saw a specialist who told me he knew I had IBD just from my complexion- I looked a whiteish-yellow at the time! Finally about 8 months later, in the middle of exams, I was diagnosed with Ulcerative Colitis. I was diagnosed with chronic migraines a few months after that, having been told they were just tension headaches for so long (they’re very different). I was diagnosed with PCOS and dysautonomia more recently, although I have had symptoms of both for several years.

I think there are so many struggles sufferers must cope with. For me, I’d say it’s the frustration of wanting to do more, live more, experience more, but having a body that isn’t capable of that. It’s hard to accept that you have to take things at a different pace than everyone else. Of course, another serious struggle is bad flare ups and pain days, which are physically and emotionally draining.

The main misconception I come across is that migraines and headaches are the same. I wish more people understood how different a migraine is from a regular headache. Migraines are much more severe; the pain is agonizing and they also affect so many other parts of your body. During my worst attacks I feel nauseous, dizzy, exhausted, weak, sensitive to all stimuli, and unable to hold a conversation. The neurological process is so different from that of a normal headache- it is a neurological disease. Generally though, the misconception that if you look well then you must be well is really tough to deal with when your illnesses are invisible. That’s not to say those with visible illnesses and disabilities don’t face several misconceptions and stigmas, they certainly do too. Listening to calming music and talking to a friend who understands are great coping mechanisms for me personally.

Having a chronic illness is emotionally challenging- it would affect anyone’s mental health.

Anxiety has been, and still is my main struggle mentally. I used to get panic attacks when I was first diagnosed because I was so afraid of becoming really sick again. I can still become anxious about leaving the house for fear of my symptoms flaring, or having a bad pain day. Of course, feeling low when the pain is intense or you are going through a prolonged flare up happens too, and I know I’m not alone with that. The constant presence of chronic illness can feel hard to escape and accept, so sometimes its hard to stay positive. I’ve become much more able to accept my illnesses over the years, but its an ongoing journey. Talking to friends and family, taking time out if I need to and therapy have helped me. But, there were other times therapy didn’t help. I think that’s it is always a good thing to try but it can depend on the individual. Its important not to invalidate your mental health struggles but to remind yourself of how much you have already overcome, and that people are there for you. You aren’t alone. Having my Instagram blog, @the_chronic_notebook has been an amazing support network for me.

Niamh

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Chaotic Nervous System What is Dysautonomia? According to Johns Hopkins Medicine, “Dysautonomia is not a single disorder but rather a broad term that describes multiple conditions resulting from failure of the autonomic nervous system.

This section of the nervous system controls automatic body functions, like heart rate, sweating, bowel motility and breathing. There are at least 15 distinct dysautonomias; the most common are neurocardiogenic syncope and postural orthostatic tachycardia syndrome (POTS).”

My story would take up an entire chapter (or three), so I will try to cut it down. I have multiple conditions due to Ehlers-Danlos Syndrome and Dysautonomia is one. I have never not know life without Dysautonomia or health issues. It used to be so bad that if stood up to grab something, my heart rate would go from 50 to 150 in a matter of seconds. I was left untreated and uneducated, living my teens and twenties without proper management. I have multiple forms of dysautonomia, which is partially what led me to getting a pacemaker.

I still have episodes where I go into an arrhythmia, followed by an adrenaline surge, shivering, poor circulation (pale extremities and lips) and a blood pressure spike. All of which are triggered by my digestive system and high pain level (from overdoing it that night). This turns into a dominoes effect of my nervous system and leading to the fight or flight response. I used to go to the ER for these episodes but found it was more dangerous than good, as the staff was in unfamiliar territory, thus causing health PTSD and delayed care. Instead, I take my emergency meds, put on my robe and heat pack, focused on my breathing, and monitor my blood pressure until I fall asleep, once I stabilize. I wake up in the morning (usually only after a few hours of sleep) and start my day, unphased. This is my normal.

I don’t want pity. I am not strong or brave, I simply wasn’t given a choice. I share my story because advocating is awareness, and it’s ACTIVISM. This is why I am back in school, as a Biomedical Science major: I am sick of millions of people being dismissed. I raise awareness for those who are desperately seeking answers but their healthcare providers don’t see or hear them. The medical field is tricky, taught that if you hear hooves to think horse and not a zebra. The zebras like myself are (grassroots style) here to make a difference in the healthcare world. We need to shed the years of waiting for a diagnosis and get earlier treatment and care. I should have had a pacemaker 10 years sooner. My heart had regularly fallen in to the 30s in my sleep, with documentation of as low as the 20s. I spent far too long with high heart rates as well, just stuck in rhythmic chaos.

Now, in my 30s I am living with that irreversible damage of medical neglect. We have to do better.

Misti Blu Day McDermott

mistibludream.com @mistibluday

Page 12 The Invisible Diaries

When I was diagnosed with epilepsy, I’d never heard that word before and had and no idea what what to expect. I had a field as far as the eye could see of learning do. I didn’t fully understand my condition until I was confronted with repetitive seizures and symptoms that I couldn’t comprehend. What hit hard was that my husband and I had only been married for 4 months and it was an immediate life-changing impact.

Together, we would go and grow in knowledge of a condition that neither of us could have foreseen.

www.tiffanykairos.com

@tiffanykairos @theepilepsynetwork

Five Facts About Epilepsy 1. Epilepsy Is Common.

Chances are, you might just know someone with epilepsy. It is more common than autism, parkinson’s disease, multiple sclerosis, and cerebral palsy combined. The CDC estimates 3.4 million people have epilepsy nationwide and one in 26 people will develop epilepsy at some point in their lifetime.

2. There Is No Cure For Epilepsy, Yet. You name it, I most likely tried it. Medication changes or adjustments, aromatherapy, and even CBD oil. None have put a stop to my seizures. While they have the potential to offer temporary relief, there is no assurance that it will cure or help someone. Though we all have the same condition, each person is different and every case of epilepsy is different. What works for me, may not necessarily work for another.

3. Not All Seizures Involve Convulsions.

Don’t chalk it up to simply what is portrayed on television.

There are more than one type of seizure. Some seizures may cause brief spells of staring into space and losing awareness of what's happening in the environment, strange sensations such as tingling or numbness in a part of the body, visual changes (including blurry vision, repeated blinking or seeing flashing lights), perceptions of smells that aren't actually present or odd behaviors or sensations (like repeated lip smacking, or a feeling of déja vu). With these symptoms, there's no shaking involved. Most seizures last 30 seconds to three minutes.

4. Epilepsy Can Happen To Anyone.

Epilepsy and seizures can develop in any person at any age.

Epilepsy is more common in young children and older people.

Slightly more men than women have epilepsy. It doesn’t mind.

It just wants to barge in unannounced in your mind.

5. Epilepsy Spans Globally.

Epilepsy is a chronic noncommunicable condition of the brain that affects people of all ages. Over 65 million people worldwide have epilepsy, making it one of the most common neurological conditions globally.

@avengersammy

@innaboxdesign

@chronicallydania

@wildflowers.pnw

@sallyvictorian

@princess.on.the.pea_

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Page 15 The Invisible Diaries

Days With Dani Nicole

by Dani Fusaro PT, DPT from dayswithdaninicole.com

@dayswithdaninicole My name is Dani and I’m in New Jersey just outside of NYC. My overall diagnosis is hypermobile Ehlers-Danlos Danlos syndrome.

It’s a genetic connective disorder that causes faulty collagen, which can result in problems in any organ system in the body. For me, I have the most trouble with my spine and my immune system. I needed to have a spinal fusion at the end of 2019 because my spine kept subluxating, and my immune system not only attacks my nervous system, but causes extensive food allergies.

I wasn’t diagnosed until I was 25. I wouldn’t say I had any misdiagnoses, however I went a long time with underlying factors being missed. We initially just thought that I had really bad Lyme disease, but it turns out an immune deficiency caused by my genetics is why I couldn’t properly treat the disease.

What is your main struggle with your illness?

I’m most impacted by the pain and neurological symptoms caused by my spine as well as my allergies. My pain is debilitating and my food allergies are so significant now that I can only eat a few foods.

What is a common misconception related to your illness?

I think a big misconception is that everyone with the diagnosis will be similarly affected. It presents in a lot of different ways, and in varying severities. Every single person is valid no matter their struggle, and I feel like sometimes people forget that seemingly “less affected” people have a lot of struggles too.

What helps you? What do you do to take care of yourself?

I would say it’s a combination of a lot of little things added together that help me. I use my neck/back brace intermittently, heating pads help me, topical CBD salves are great, my sequential compression devices are awesome, making lifestyle changes, and then of course my medications. Lifestyle changes is easily the largest singular factor that has helped me. Learning how to properly pace myself and not over-do it has helped immensely. I started my own business, and I make sure to schedule in breaks and then I don’t work Wednesdays either so that I can spread out the work and get enough rest. I’m really privileged to be able to do that, but if you’re in the position to advocate for yourself and the amount you work or study, I highly recommend spacing things out and adding in breaks when you can.

Continue...

I’d say pacing is the biggest way that I take care of myself, but I also really love haircare and skincare, and then of course facetiming my friends! Haircare and skincare make me feel like there’s something tangible I can do for myself, and my hands end up drenched in product so it gets me off my phone and out of my head for a bit!

How is your mental health affected and how do you manage that?

My mental health has been up and down throughout, but for almost a year now it’s been really great! I dealt with a lot of anxiety because I was so sick, it was too overwhelming to make phone calls and do basic things I needed to do in order to contribute to my care. I’d often have breakdowns because I wanted to do it, and felt guilty that I couldn’t. I had to learn how to ask for help, which was hard. Therapy helped a lot and now thanks to better treatments and coping strategies, I’m much more stable so the breakdowns are few and far between! I maintain and manage that by pacing and making sure that I don’t take on too much at once. I prioritize energy conservation, rest, and I ask for help when I need it.

What is a scary/difficult moment in your life and what was the best?

The scariest moment so far was my spinal fusion surgery. I was so sick leading up to it and I was scared that afterwards it might not work. It was a really rough recovery with a lot of traumatic incidents in the hospital. The best moments were graduating physical therapy school and then starting my own business as a chronic illness mindset and lifestyle coach, as well as taking a job working as a telehealth physical therapist specializing in complex chronically ill patients!

Tell us something fun about you: I’m obsessed with coffee, music, and fashion! Prior to covid, I was always exploring independent coffee shops and going to concerts whenever I can. I also express myself through my sense of fashion. I truly enjoy putting outfits together and taking photos to express my mood!

What advice do you have for others who are recently diagnosed?

Do your research, but don’t get obsessive! Your diagnosis is going to change your life in so many ways and it’s going to change you, but there are parts of you that it could never change. Don’t lose your sense of identity to a diagnosis. You’re still you even though you’re sick.

What would you like others to know about your illness?

I feel like everyone says this, but that it’s a lot easier than you think to fake being well. Even if I look all done up and great, outings take everything out of me. I don’t have a lot of energy, so if I’m spending time with you that’s a huge compliment.

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Artist Feature:

Natalie Rath

@moonsmudged

My name is Natalie Rath and I live in Melbourne, Florida. At this point in time, I am a no-longer-twenty-something mom of two, homeschooling a preschooler while attempting to maintain sanity amongst disability, the current pandemic, civil unrest, climate change, and everything else going on in the world right now.

I was diagnosed with Dysautonomia & POTS last year, following a traumatic car accident that left me with constant dizziness, migraines, vertigo, etc.

There are other things we suspect that go along with it, but it can be very hard to get a diagnosis. Most of us struggle with symptoms for years, decades even, so it can be such a relief to finally get some medical acknowledgement that it really isn’t “all in your head”.

Lately, I’m just trying to make it day to day by managing my symptoms (aka drowning in salt) and trying to make my life as stress free as possible in the current situation. After learning about my chronic illness and losing someone very close to me, I started using art to help cope with all of the new and confusing emotions that come along with loss, and being diagnosed with an illness for which there is no cure.

Right now, my artistic focus is on digital illustration, using the app procreate for the iPad, but I also like to watercolor, paint, draw, write, and just make art in general. I also love to cook and bake, when I can. I get a lot of my inspiration from my dreams. One of the reasons I started drawing was so I could draw my dreams. I also get a lot of inspiration from random, everyday stuff- like boring, ordinary things that people might not pay much notice to.

Kitchen cabinets, bathroom sinks, messy bedrooms, and empty department stores. I have an obsession with shopping malls, especially the style from the 80’s and 90’s. The concept of liminal spaces inspires me as well. I get a lot of inspiration from nature, too, from the sky, the sunsets, and bodies of water.

That’s where I get color inspiration.

The best advice I could give to anyone who wants to start making art is honestly to just to do it. Whatever situation you’re in, whatever tools and materials you have at your disposal, make the best of it and start where you are.

Something that always held me back was that I thought I needed special paint or special paper or whatever, but it’s not true. You can get stuff later.

Just start somewhere.

Follow me on Instagram @moonsmudged

@moonsmudged

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Mental Health Feature: Playing The Med Game

by Katilyn Wetzel Hi. My name is Kaitlyn. Almost 2 years ago, I was diagnosed with Bipolar 2 disorder. This diagnosis came after many months of episodes and hardships. I put my partner through a lot before I was diagnosed and on proper medication. The diagnoses didn't magically stop the symptoms, though. After the diagnosis came the painstaking medicine game. My psychiatrist and I worked tirelessly to find the right medicine cocktail that would both keep me stable and let me feel like myself.

Now, two years later, I think we finally have the right combination of meds.

What is bipolar disorder? You'll have to do your own research, but I'll give you a basic rundown. There are several different categories of bipolar, but I'm going to focus on Bipolar 1 and Bipolar 2. Bipolar 1 is when a person has periods of extreme depression and periods of mania. The durations differ for everyone, but typically each episode can last from a few days to a few months.

Mania is basically a super-high state where consequences mean nothing. People who are experiencing mania tend to feel great and nothing can bring them down.

Sometimes they can have delusions such as believing they can fly or that they are a god. People experiencing mania tend to have delusions of grandeur which can lead to them impulsively quitting their job to open a business or spontaneously taking a trip across the country.

Consequences mean almost nothing during a manic episode, so people in that state might engage in risky behaviors that they would not typically engage in. Mania causes intense energy and a lack of sleep.

1-800-273-8255 National Suicide Prevention Lifeline

"I wanted to share this because I advocate passionately to end the stigma on mental health. I figure the best way to help end the stigma is to share my story unapologetically."

@wildflowers.pnw

People with bipolar 2 also have episodes of extreme depression, but instead of mania, they have hypomanic episodes. Hypomanic episodes are basically less-extreme versions of manic episodes.

Someone in a hypomanic state might spend all their savings, and engage in risky behaviors.

Personally, when I was hypomanic, I would spend ALL our money, despite having worked for months to save it up. I would do spontaneous things like drive to Ohio by myself in the middle of the night, or buy a truck. I often felt like the world was moving in slow motion. I had so much energy and no one could keep up with me. I got drunk a lot and would be frustrated when the people I was drinking with were done and wanted to go to bed. I struggled to hold conversations as so many thoughts were racing in my head. By the time the person responded to what I had said, I was ready to move on to a different topic. This made it difficult for my friends and family members to hold meaningful conversations with me. I also become super irritable because I feel like everyone is moving so slowly and that is frustrating.

I'm mostly stable now, but it was a long road to get here, and the work is not done. Finding the right medicines is hard. It's exhausting. The antipsychotics or antidepressants can mess with so many aspects of your body and mind. Weight gain and loss of sex drive are super common side effects with many medications. Some medicines make the menstrual cycle worse. Some can make people moody or sad or angry. My most common side effects were brain fog, where I felt like the whole world was grey and in slow motion, and an upset stomach. I recently had to switch to a new medication because one pill made me throw up every day, 10 minutes after I took it. Because I kept throwing up, the medicines weren't being absorbed into my system all the way and I ended up having a hypomanic episode as a result.

Medicines take weeks to reach therapeutic levels. It's frustrating to start a medicine, wait several weeks for it to "kick in", wait a few more weeks to see if it is working, wait for an appointment, only to decide it's not the right medicine and start over with something else. Finding the right medicine combination took me TWO YEARS. Two long years of trying dozens of medications and different doses until we found a combination that prevents me from going manic, curbs the depression, calms the anxiety, and still lets me feel like myself.

My work is not done, even though the meds are working. I still have to go to therapy, be intentional about my self care, and check in with my body daily.

I wanted to share this because I advocate passionately to end the stigma on mental health. I figure the best way to help end the stigma is to share my story unapologetically. I plan to use this blog space to blog about my entire life: knitting, hiking, the animals, and my mental health. Awareness and understanding are crucial to ending the stigmas that surround mental illnesses. By educating those around us, we can each help end the stigma and move toward a future where people who are mentally ill are not portrayed as crazy, deranged, or dangerous.

Kaitlyn

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The Invisible Diaries Podcast: Season 2, Episode 16 with Cara Boileau "Dr. Jaime Zuckerman describes toxic positivity as “the assumption, either by one’s self or others, that despite a person’s emotional pain or difficult situation, they should only have a positive mindset’”; think of the phrase “positive vibes.” We are being inundated with “motivational” Instagram posts, “inspirational” memes and platitudes are being thrown our way as a means to encourage us to move away from our pain. When we are forced or expected to focus on the positive, we are robbed of the opportunity to have the full experience of human emotion. Toxic positivity invalidates, minimizes and denies what are perceived as negative emotions (anxiety, fear, loneliness, sadness, anger).

So, why does this matter?

When we cut off and dissociate from these emotions, we stop listening to valuable information our bodies are telling us. Fear warns us of perceived danger. Anxiety tells us that we care. Anger is rooted in experiencing injustice. Instead of being able to tap into this awareness, we begin to feel secondary emotions, like shame or guilt, which are far more “toxic” and harmful. What we are left with is a group of people who feel depressed, anxious and unworthy.

As most of us would agree, this year has been truly trying- mentally, emotionally, financially, etc. It is important to recognize these challenges and move through them, rather than suppress them or numb them away. Avoidance only makes pain last longer. What we can do to combat this epidemic of toxic positivity is really look at the language we are using and start there. By shifting the phrases we use, we are inviting the full range of emotions to show up." -Cara Boileau *Listen to the full episode on iTunes, Spoifty, YouTube or theinvisiblediaries.com **Available November 6th

@mindfully.well

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