DripDrop: A Dysautonomia Game Changer

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I am wrapping up my first month working full time. As I said after week 1, If you asked me or Sean 3 years ago if that was possible, we would have answered both no and never.

For many patients, this still is and may always be out of reach. Every patient is unique in symptom presentation and management. Ultimately, this is a chronic illness that is out of our control (not an easy fact to accept). However, there are a few practices from which every patient might benefit.

Many of you already know my story, but if you don’t, I’ve found these four practices to be crucial.

1. See a specialist even if you feel there is no hope.

When I showed up at my first appointment at Duke 4 years ago, I did so with zero hope- a last ditch effort with the intention of keeping my promise to family that I wouldn’t give up on finding a doctor to manage a complicated and frustrating chronic illness.

Little did I know that Dr. Frazier-Mills and her team would fine-tune my pacemaker settings and medications so I could direct my limited energy toward yoga physical therapy.

2. Prioritize your physical therapy, whatever that is for you currently.

For many of us, this will mean saying no to other activities. Physical Therapy might be all your body can handle in one day.

There is no shame in that. If you feel shame, it’s time to check in with a counselor… which brings me to my next practice.

3. See a counselor, psychologist, or psychiatrist regularly- preferably one your Dysautonomia/POTS specialist recommends (someone who possesses an understanding of your illness and can delineate between physical symptoms and psychological/psychiatric symptoms).

Guilt and shame are common emotions accompanying chronic illness. You are far from alone in feeling it, and you are braver than you may recognize when asking for help to manage the psychological hurdles of chronic illness.

4. This last one is a newer addition to my quality of life… and it’s a game changer- an Oral Rehydration Solution (ORS) by DripDrop.

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For several years, I’ve taken my hydration and salt intake very seriously. Why? Dysautonomia/POTS patients live with chronically low blood volume.

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Even once I no longer passed out on a daily or weekly basis, I still crashed in the afternoons with weakness and brain fog. Due to the unpredictability of those crashes, committing to any kind of set schedule for work, whether part or full time, felt out of reach. I was still supplementing with IV saline prior to major commitments and trips.

A friend who is knowledgeable about Dysautonomia/POTS reached out to tell me about an ORS called DripDrop. I took him up on his offer to try samples, thinking it may be useful but not drastically alter my quality of life.

I assumed it was a standard electrolyte drink. Within a few minutes of finishing the first DripDrop, my nearly constant brain fog and weakness lifted. I didn’t understand how that was possible, which is how I found myself perusing DripDrop’s website. DripDrop was invented by a Mayo Clinic trained physician who was looking to save lives on a relief mission. He turned to ORS to treat life threatening cases of dehydration, but due to the unpalatable taste, patients- especially children- struggled to keep it down. Dr. Dolhun solved that problem by creating DripDrop, an ORS which actually tastes good. 

I learned that there is a crucial difference between basic electrolyte or sports’ drinks and an ORS. 

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“To be effective, an ORS must contain a precise ratio of electrolytes. If the solution's balance is off, the solution’s hydrating potential is drastically limited. For instance, an ORS with too much salt can lead to an electrolyte imbalance, spiking blood sodium levels and exacerbating dehydration. On the other hand, a solution with too little sugar or salt, limits how quickly water is absorbed. Conversely, if the correct ratio is met, water absorption is maximized. In fact, one early test following Crane’s discovery suggested that an ORS with the right ratio of sugar and sodium could increase water absorption 2-3x.”

I drink DripDrop twice per day, per my Doctor's instructions- first thing in the morning when I take my other medications, and shortly after lunch in the early afternoon. It’s incredible how something so simple has drastically altered my quality of life and allows me to work full time

As if that ins't enough, DripDrop's motto is #StickToYourMission - they are helping us stick to our mission by donating $1000 to our fundraising project supporting a medical study at Duke testing yoga as Physical Therapy for Dysautonomia/POTS patients. 

Glass Body Steel Soul: Caroline Rudd Interview

Abbey: Thanks for sitting down to talk with me today. You’re the very first Glass Body Steel Soul patient interview! Abby Oliver (photographer)  is joining us so that she can get to know you and tell your story through images (you can learn more about Abby and her work on our Partners Page).

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Caroline: I’ve never met anyone else with Dysautonomia! You’re the first person I’ve met. Having a support system and networking with other patients is huge and really important for our mental health.

Abbey: Yes! And I didn’t realize I am the first patient you’ve ever met! That makes this even more special. You are not alone. And telling your story will foster awareness and remind other patients that they are not alone either. So, thank you for being brave enough to do this. I know first hand how vulnerable it feels to share your story publicly.

So tell me, what was your life like before chronic illness? Before Dysautonomia?

Caroline: Yea, I feel like I’m a completely different person, which sounds crazy.

As far as academics, I took all AP courses, always made the honor roll. I was active in my school’s choral ensemble and annual musical, and I worked a normal assistant job at my local Meals on Wheels.

Physically, I was really active. I did competitive dancing- Dance Moms Style (laughing). I started running my freshman year. I tried to run 3-7 miles per day... I just loved running!

I played golf up until my senior year of high school.

Now, I look back and think, “How the heck did I walk 18 holes with clubs on my back in the middle of august when it was 100 degrees?”

Abbey: I can hear in your voice how much you miss those activities. What do you miss most since you became sick?

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Caroline: Yea, running would definitely be it.

Abbey: And when did your symptoms begin?

Caroline: I started getting sick around my sophomore year, with random symptoms like pain in my legs, headaches, dizziness, nausea, cold hands and feet, tremor, and muscle weakness, but I still kept up with my active lifestyle.

I went to my primary care doctor multiple times and told him I was weak and dizzy. But my blood work was normal, and I was kind of just dismissed.

So I thought, “Okay, I guess this is normal?”

I became homebound in college after I started passing out and was too weak to go to classes.

Abbey: How did you feel emotionally when you were undiagnosed- when you were dismissed but knew that your symptoms were real?

Caroline: The process of getting diagnosed was terrible.

I would go into a doctor’s office and wonder, “Is this person actually going to take me seriously or am I going to be told I have anxiety again?”

It impacted my confidence level and self esteem, and it’s something I still struggle with. There’s so many outside voices when you’re undiagnosed that you’re faking, lazy, or -insert adjective here-, and that’s when I started to lose confidence in myself. I felt like if I spoke up, told someone I felt sick, I would be judged.

I had teachers who were not supportive. I would tell them I was sick and put my head down during class, or miss a week, but they didn’t believe me.

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I had a lot of classmates call me a “hypochondriac,” or say that I was “dramatic.” I stopped updating my friends or teachers about my health because I felt like they didn’t care.

I was also losing my ability to run any more than 3 miles, and had to quit golf; both of which were upsetting because those were ways for me to socialize, exercise, and de-stress.

Abbey: I’m glad you mentioned anxiety. It’s a common thread in patients’ stories- to be told that all of their physical problems are the result of either anxiety or depression- which are both very real medical issues. However, you can’t improve Dysautonomia symptoms by treating anxiety or depression. Mental illness is a separate condition if it is present at all.

So, I’m curious, what were you interpreting as your doctor’s reason for saying that? How did you feel? Were you thinking, “Why would he say this to me?”

Caroline: Yea. Well, I knew why.

It’s easier to find anxiety than to take the time to find whatever else is wrong, because they clearly didn’t know.

Abbey: Did you feel confident advocating for yourself? Some patients do, but most I’ve interacted with do not.

Caroline: Oh, I didn’t.

I remember going to the doctor and getting in the van after with my mom, and I just broke down crying, “What are we going to do? When am I going to see a doctor who is actually going to help me?”

Because we knew something was wrong, and it wasn’t anxiety.

Abbey: Did anxiety ever become a factor?

Caroline: I didn’t care until I passed out in Walmart. That was the tipping point for me, because that’s when I had to move home from college, and I was homebound for 8 months. I was worried to go anywhere because I was so weak at that time, it was very possible that I would pass out any moment.

I’m definitely not an anxious person, but what gave me anxiety was going to a doctor and wondering if they were going to take me seriously. Or going out places and wondering if I was going to pass out or feel strong enough to stand. That’s what gave me anxiety. Not anything else. I had anxiety from the unpredictability of my illness.

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Abbey: That’s so well said. I’ve heard many people try to describe that, and it’s difficult. I remember I myself was hesitant to get counseling for anxiety because I worried that if it was on my record, doctors wouldn’t treat my physical illness. And same experience- I never suffered from anxiety until several years into living with Dysautonomia.

So for you, anxiety ended up happening, but you’re saying it was secondary to chronic illness? It was because of the unpredictability of your symptoms and lack of resources in managing a debilitating chronic illness?

Caroline: Yes. After passing out at Walmart and becoming homebound.

When I was homebound, we would take a car ride just to go get food, and I had to lean my chair back since I felt so sick and weak. Eventually, I wouldn’t even go because it was not worth wasting my energy.

Abbey: Which we both know what you are describing is orthostatic intolerance. It’s the hallmark sign of Dysautonomia- you have the inability to remain in upright posture. Your body, in a sense, loses its ability to adjust to gravity, which is unfathomable until you experience it.

What’s an activity or chore that most healthy people take for granted which is difficult or impossible for you because of orthostatic intolerance?

Caroline: Showers. When I was homebound, I couldn’t even sit from weakness. When I would take a shower, I couldn't tolerate the heat or standing, so I did lukewarm or cold baths.

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I still sometimes have to take naps after I shower because I’m so wiped. At least I can stand and take hot showers now though!

I did lose independence during this time. I couldn’t sit up long enough to drive to pick up food. I couldn’t live on campus like an average college student. I couldn’t do my own laundry. I couldn’t walk my dog. I began to feel like I was burdening my family, and I thought I’d lose my friends because I wasn’t able to visit them.

I felt like such a burden to my Mom for medical expenses and the attention I required. No one wants to feel like they’re making everyone else’s life more difficult.

There’s just a loss of control, so simple things able bodied people feel like they have control over, I just have to realize, “Oh I can’t do that today.”

Abbey: Thank you for being honest about the emotions accompanying that loss of independence. I think, too often, we skip ahead to the positivity without allowing people to experience the valid emotions present in loss.

So your mom was your caregiver when you were homebound? How did that affect your relationship?

Caroline: Yea, my mom was my caregiver, and because she has Lupus and RA, she works from home and had the time to help me.

Abbey: So you essentially had a disabled caregiver?!

Caroline: Yea. In a way, I got lucky. Most people don’t have someone in their life who also goes through chronic illness.

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I don’t know what I’d do without her, because she was so empathetic and understood and knew what I needed when I needed it.

I was always nervous to tell people if I was feeling sick or faint, but she could tell without me even having to say it, and she would speak for me, help me get to a place where I could lay down, or talk to people and describe my situation better than I could so people would understand and accommodate.

We’re definitely closer. I didn’t understand her illness or comprehend how debilitating it can be. I was never rude to her about her illness, but I definitely didn’t get it until I went through my own.

Abbey: Does that give you compassion for the people you may sometimes feel frustrated with for not understanding?

Caroline: Yes, definitely. That’s what I’m saying. It gave me so much more patience, because it’s easy to get frustrated at people when they don’t understand or when people look at me when I get out of a handicap spot and say, “Oh she doesn’t look sick.”

I got my tattoo after my grandfather- because he’s so empathetic about all of this. It's a recording of him saying, "I love you, honey." When my mom and he picked me up from my dorm the day after I passed out- he had to step out of the car and take a moment.

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I think it’s more difficult for people our age to understand because nobody expects to be this sick this young. And that’s what I wrote an essay on a long time ago. Often, when you think sick, you think old. I don’t personally know anyone my age who is sick. It’s just not something many young people have seen or encountered.

Abbey: Yes. Had I not gone through this, I’m pretty sure I would think that I had control over my health to a certain extent. I can understand why people assume. But if we educate with compassion and patience, we really can spread awareness.

What do you feel is important for people and communities to understand about Dysautonomia?

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Caroline: That not every illness is visible; just because someone looks “healthy,” doesn’t mean they feel that way. I wish more people understood when I say “This is too much for me,” or, “This isn’t what’s best for my body,” I won’t just “be fine.”

I want more people to recognize that putting your body first is admirable rather than negative; it shouldn’t be met with “You’ll be fine,” or, “Push through it,” but rather, “I’m glad you’re listening to your body.”

Abbey: Yes. It is admirable. Is there anything you’ve discovered about yourself that you wouldn’t have otherwise- without illness? Basically, what is your silver lining?

Caroline: I went into college pre-med, but my pre-med courses weren’t available online once I became homebound.

So I took an English course, and it was the only thing I looked forward to... writing about it....

I wrote about my health for one of my papers, and I did my own writing on the side. I switched my major that summer, and it was definitely for the best!

And because I’ve established a good support system that doesn’t shut me down or invalidate my feelings about my illnesses, I feel more comfortable with myself now than I ever have.

But still, I have those times where I try to be the first one out of class so that none of my classmates see me getting into my car in a handicapped spot, or I put off telling new people of my symptoms because I don’t want to intimidate them.

So it’s give and take for me. Some days I’m confident, and I talk about it openly. Some days, I feel let down by my body.

Abbey: What do you want to say to people who are donating and supporting Glass Body Steel Soul?

Caroline: To those who have or will give: your support and awareness means that those who are experiencing symptoms but are undiagnosed, or misdiagnosed, might find an answer sooner.

It means those who are diagnosed can have the hope to one day live a more functional life, and for each patient, there’s a network—a community of people who can relate and share in experiences, and support each other. I feel as though the mental health aspect of having a chronic illness is just as important as diet, exercise, and meds. Knowing you’re not in it alone really does make a difference.






 

Align Words with Truth

"My past is my past. A book on the bed stand. At any point, I can pick it up and revisit the joy or the pain, but its contents will not rule me anymore. The life still ahead of me is a clean white page. There is work to be done. A world to be explored. Stories inside me still aching to be told."

- @beautaplin

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My greatest insecurity? I've never worked a corporate job or established a career. The thing that no one ever talks about when you're disabled as a teenager is how you will fulfill your dreams when you originally dreamed those dreams in a body which was capable of anything you asked of it.

I grew up reading and dreaming, followed by more reading and dreaming. At 8, I wanted to be an aquatic physical therapist. In 5th grade, I decided I wanted to be a Mandarin major in college (and for 2 years at UNC, I was). I grew up with zero desire to have children (although being an aunt is one of my favorite joys), but constant dreams about what I would do and where I would go. I grew up knowing that if you work harder than anyone else, if you put in the hours and precision required, you can accomplish great things.

Until recently, chronic illness shattered that confidence. As a freshman in high school, I went from swimming 9 times per week, nerding out over homework (aka enjoying school), being excited to write essays and debate in class, and counting down the hours to my favorite class (improv), to lying down in the back of my car during lunch so that maybe, just maybe, I could keep my head off the desk during class. I remember trying to ignore the migraines, weakness, nausea, sweating, and heart palpitations during school and swim practice. I thought it was normal to black out on leg days, but everyone else had more grit... believing I lost that grit was the ultimate blow to my confidence. I still remember the first time someone told me this was all in my head... mind over matter, he said. I didn't respond, but when I got home, I cried. Because if I believed that, it would mean the aspects of my inner character I valued most were no longer true.

I shouldn't have listened. I should've trusted myself. Instead, like an outer body experience, I watched myself go to college and make self deprecating jokes about how lazy I was for skipping class... all the while subconsciously hoping someone else would see that wasn't true... that I was struggling to leave my dorm room most days. When friends left the dorm early and returned late, I didn't correct them when they assumed I had also been out on campus all day.

Don't do that... don't ever put yourself down in the hopes of someone else lifting you up.

Laugh at yourself over actual funny things, like queefing hella loud during a yoga class, but do not shoot your character down (even with jokes) just because you want to hear someone disagree... do not wait for someone to save you and hold your hand through this process.

It's not another's job to define you or see the best in you, even though some encouragement along the way is healthy. It's your job to define and celebrate yourself.

I recognize that the medical community is in desperate need of awareness so that sick, young people can receive the validation, treatment, and practical assistance they rightfully deserve.

However, if my self worth was developed to the extent it is currently, I would have felt pride rather than shame for my fight. I would have demanded disability parking and drove to classes when I felt well enough to attend (and I wouldn't have worried about whether people believed such measures were necessary). I would have used the disability option to skip physically attending classes and studied classmates' notes instead. I would have been excused from testing during bouts of seriously low blood volume. I would have talked to my advisors about any and all opportunities available to disabled students and networked for jobs that were willing to accommodate disability needs (even for a young woman with blonde highlights and an affinity for heels). Instead, I pretended I was the same as everyone else but just didn't care about such ambitious things like class and networking. I was embarrassed. I tell you this so that you can learn from my mistakes.

For those of you recently diagnosed, I hope my story can save you from some of the poor cognitive coping mechanisms that are classic in denial- fear of a reality you know to be true.

You are not lazy. You are a fighter.

You are the director of your life. If you convey the protagonist as lazy and lacking ambition, that is exactly what your audience will perceive.

our words and thoughts are powerful. No one but you can see who you truly are beneath illness... so if you want to connect with people on a genuine level and not suffer the isolation that is too often a natural by product of chronic illness, align your thoughts and words with the truth only you can fully see.

I remember when acceptance kicked in. It was my 21st birthday. I passed out five times that day and cancelled my birthday plans. I was short of breath from simply lying on the couch.

I cried like I'd never cried before. You know the cry I'm talking about... when snot is all over your clothes and your face gets a legit workout from all the ugly scrunching. Oh yea. We all know that face.

I finally admitted that this is my life, and I can deny it, or I can learn from it and explore aspects of myself I wouldn't have explored had I received the lottery ticket that is health.

With this new outlook, I stopped calling myself "pathetic" for only being able to accomplish one activity per day. Instead, I took that precious responsibility seriously, dedicating my upright time to yoga as physical therapy. I decided to take it just as seriously as my friends took their careers. When I could tolerate it, during my "couch time," I researched Dysautonomia until I understood the Autonomic Nervous System better than the average doctor.

(Before the clinic at Duke existed) I took my research to cardiologists who were not specialists and told them which prescriptions to write. I've discovered that medicine can be an art. It is an invigorating blend of creativity, logic, and analytics. And as the clinic at Duke will tell you, I developed a knack for diagnosing various types of Dysautonomia and developing creative and logical theories for treatment.

For years, I dedicated my necessary down time to critically reading publications on Dysautonomia. After working through justified anger upon discovering the circular reasoning, marginalization and cognitive dissonance existing there, I developed my own theories and method for physical therapy utilizing hot vinyasa power yoga (although extremely modified at the time).

For 2 years before I became a yoga teacher, my itinerary for the day was yoga... and hopefully something else, but if I could only do one thing, yoga PT was the necessary priority. I worried that my friends would resent me for not being more present in their lives. Sometimes I projected those fears into my relationships.

They didn't. They loved me and treated me like I was still smart and capable, even though I had nothing to show for it in terms of a career... even though they didn't know me before Dysautonomia. Through remarkable empathy, they saw the real me when most people couldn't... Thank you Angie, Rachel, and Emily. You have made an incredible impact on my life.

Basic hygiene was the most frustrating obstacle during this season. I needed to do physical therapy at least 4 days per week, but exercise meant my hair needed to be washed. At the time, whenever I took a shower, even with a shower stool, I had to lie down the rest of the day. So we crunched our budget so that I could get my hair washed 3 times per week at the salon, and I could simply wash my body in the shower without having to lift my hands overhead.

Now being much stronger, the ability I am most grateful for is washing my own hair without always needing to lie down afterward... and being able to get out of bed in the morning BEFORE taking daily medications. What a tiny thing to make you tear up. It's an emotional subject for me. I am now grateful for the most basic aspects of my days.

I was deeply ashamed about how difficult these tasks were for my body- only my closest friends and family knew how bad it was, and even then, I isolated myself more than necessary because of the shame.

Learn from my mistakes. Do not be ashamed. You are living a lifetime with a condition that (left untreated) is equivalent in quality of life to congestive heart failure.

You got out of bed this morning? BADASS. You did every single physical therapy session even though you thought your legs would crumple beneath you? BADASS.

Stop punishing and shaming yourself for a fight that should be admired and celebrated. Don't wait for family members, friends, or doctors to see you as you really are. See and celebrate your inner strength, no matter how physically weak you are at this stage of the journey... and if other people see it too, that's just bonus points.

Be the director of your life.

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Volunteer Work for Yoga Teachers

Exciting announcement! Erica LaGarde (pictured) and Ashley Randall (to be featured soon- more exciting announcements to come regarding Ashley), both yoga teachers in the Raleigh community, volunteered to learn about Dysautonomia in order to provide a safe space, both physically and emotionally, for patients to practice yoga in their classes alongside healthy students.

Why? How does this work, and how can you be involved?

Many patients contacted me asking how to start yoga. They want to try it NOW, even though the medical study at Duke hasn't started. They understand that this is not yet a recommended physical therapy, but the theory makes sense to them, and they're ready to try it without the backing of a medical study.

I struggle to give recommendations as patients may not realize how much I modified (much more than what was verbally offered during group classes) the first year of my practice. I am concerned that patients participating in a group class may try to do too much too quickly, not knowing the available and proper modifications to make for their condition.

Yoga teachers who understand Dysautonomia can encourage patients to listen to their bodies, allowing Dysautonomia students to break the yoga practice down to an incredibly modified level, even if the rest of the class is practicing differently.

Simply knowing their teacher is aware of and educated about their condition will encourage patients to practice at their intensely modified level without worry or embarrassment during class. *Many yoga students, healthy or otherwise, find it embarrassing to modify their practice. This could not be farther from the heart of yoga, as practicing intelligent and unique modifications based on personal circumstance is the sign of a mature yogi. These teachers will encourage Dysautonomia students to step out of any inaccurate perceptions about modifications, no matter how extreme those modifications may be, and teach them additional ones specific to their physical needs.* 

Educated teachers will possess a comprehensive understanding of the Autonomic Nervous System (ANS), Dysautonomia, and comorbid conditions that compound Dysautonomia symptoms. They will learn additional modifications not taught in their 200 RYT that are specific to Dysautonomia patients. They will learn the best recovery positions (and why) for patients after class.

Due to this education and awareness, they will provide a compassionate space to practice, understanding how brave and strong these patients are for attending class.

Our first two volunteers, Erica and Ashley are leading the way. Thank you both for being the change. Glass Body Steel Soul is incredibly grateful and excited to partner with you. 

Yoga teachers, if you'd like to volunteer several hours of your time to learn about Dysautonomia and partner with us, please email me: abbey@glassbodysteelsoul.org. 

After your education, you will be featured as a partner on our website, so that patients can connect with Dysautonomia knowledgeable yoga teachers.

We are in need of non-heated yoga teachers, as most patients are not willing to experiment with the "torture" of heat training to build heat tolerance since the medical study testing this theory has not yet occurred (hot yoga is phase 2 of the medical study at Duke- limiting variables).

$10K: WE CAN DO IT!

Big thank you to everyone who has supported #GlassBodySteelSoul so far. We have raised (profit) a little over $2,000 through our first event! THANK YOU!

Our goal is $10k. Why?

We are raising $10k in order to begin testing yoga as physical therapy on Dysautonomia patients of Duke Syncope & Dysautonomia Clinic.

Why yoga?

We are testing yoga as physical therapy due to the effectiveness of yoga as treatment in my personal case. When I entered under Dr. Frazier-Mills’ care, she worked wonders in my pharmaceutical treatment. This enabled me to dedicate more time and energy towards physical therapy. I considered enrolling myself in one of the popular physical therapy protocols for Dysautonomia, but after reading the evidence to support such methods, I found it logically flawed (for treating my type of Dysautonomia), so resigned to researching alternatives.

You see, I am also diagnosed with a connective tissue disorder called Ehlers Danlos Syndrome (EDS). The type I have is not life threatening, but disabling. In layman’s terms, the connective tissue of EDS patients is more “elastic” in comparison to the average person. This causes a host of problems, but the kicker for those who also have Dysautonomia is that blood vessels are in fact, connective tissue.

So when blood vessels are too elastic, blood, carrying vital oxygen, cannot be adequately pushed up towards the heart and brain. This is why EDS and Dysautonomia bodies can be described as having lost their ability to adjust to gravity. Without proper blood vessel tone and constriction, gravity wins, forcing blood to pool in the lower half of the body.

At best, this makes someone severely disabled and weak through a long list of symptoms (most of these symptoms cannot be seen visually). At worst, the patient passes out and suffers an anoxic seizure (convulsions from lack of oxygen- not epileptic in nature). What I just described has essentially been the daily battle of my life since I was a teenager.

Unfortunately, the most well known Dysautonomia physical therapy protocol is being used on these types of patients, but it does not adequately address lack of blood vessel tone when caused by genetics rather than physical deconditioning.

It was that realization which led me to pass on participating in the existing protocol and develop something specifically for patients with Dysautonomia compounded by EDS (although at the time, I only had my own needs in mind). And bonus, what I developed theoretically should be beneficial for POTS only patients as well.

What led me to yoga?

I looked back on my own case, asking which exercises I found most effective and why. When I was 16, I spent a few weeks at the Mayo Clinic. They explained to me the importance of blood vessel tone through the analogy of a fighter pilot.

G suits are used to prevent pilots from blacking or passing out as I do here on the ground. My body, simply standing upright, experiences what a fighter pilot would experience if he was not wearing a G suit.

When activated, a G suit presses firmly on the abdomen and legs to prevent blood from pooling in the lower half of the body. The goal of my physical therapy with Mayo was to strengthen my core and large leg muscles to the point that I could intentionally contract them to push blood upward, just as a g suit does through pressure.

They assigned me to a physical therapist back in Raleigh to build up to high weights low reps, targeting large leg muscles in conjunction with deep core contraction. The goal was to teach me to intentionally elevate my blood pressure through core contraction.

I highly respect and value the theory and logic behind this method, so everything I explored added to the theory and improved the method. I developed my physical therapy by asking a simple question. Is there a more effective method?

Insert a lot of brainstorming + trial and error + reevaluating facts. Rather than taking you down that path, I’ll simply explain why yoga is scientifically unique as physical therapy for Dysautonomia EDS patients.

(Power Vinyasa) Yoga is one of the few forms of exercise that focuses predominantly on isometric contractions. It emphasizes isometric contractions by holding each pose for a certain amount of respiration cycles. Not only that, but nearly every yoga pose emphasizes a contraction of the core.

What are isometric and isotonic contractions?

Isometric contractions exist in static positions rather than through a range of motion. Every other exercise and physical therapy I participated in emphasized isotonic contractions: the joint moves as the muscle contracts (think reps). Many common gym exercises are isotonic: push ups, squats, leg press, sit ups etc. Pilates utilizes isometric contractions, but the predominant focus is isotonic. I found pilates to be effective as physical therapy, but due to the focus on isotonic contractions, it was not as effective (for Dysautonomia EDS needs) as yoga.

While daily isotonic contractions such as unloading the dishwasher and walking are difficult for patients, daily isometric contractions pose the most disabling obstacles. In fact, the standard diagnostic test, a head up tilt table test, is actually a simple isometric contraction. Patients’ most common complaints involve showers and waiting in lines. We tolerate these activities so badly that most of us isotonically shift our weight, bending and straightening our knees while waiting in lines to avoid isometric holds. Most of us have shower chairs so that we can take breaks from the simple isometric contraction known as, “just standing there.”

I concluded that we should be training and conditioning ourselves for our greatest challenge: isometric contractions.

Obviously, my yoga physical therapy required incredibly small baby steps. I never dreamed my practice would grow into what it has become.

Through yoga as physical therapy, I have increased my upright time from 15-25 hours per week to approximately 45 hours per week. On average, I have one day per month (sometimes per two months!) when I pass out almost every time I stand. Before yoga, I experienced several days per week when I would pass out frequently.

I am not cured and honestly, compared to a normal person, my quality of life is still pretty low. That’s not a complaint (no pity required); it’s an honest fact with which I’ve made peace. Compared to the last 10 years, I feel like I'm free as a bird. There is no cure for Dysautonomia. However, there are things we can do to help. We cannot currently be cured, but we can gain ground.

This potentially groundbreaking physical therapy is worth supporting financially and worth patients fighting for personally. My quality of life has drastically improved, and I have my doctor and yoga to thank for that.

Please see us. Please give to this cause. Please help me ensure that the Dysautonomia treatment path will be better for the patients who come after me.

If this method is effective when tested on patients, it will become the physical therapy protocol at Duke and hopefully other clinics.

If proven effective, I am personally committed to building an online platform for patients to practice this physical therapy in their own homes, regardless of location or income.

You may not be able to cure us through your giving. I wish I could promise you that, but I can’t. What you can do is no less valuable. You can change our world. To a Dysautonomia patient, the potential of this physical therapy is the difference between being unable to work, and working part time as a disabled person

We are “Dysautonomia Warriors.” We are fighting an endless battle without reprieve; yet, no matter how many times we pass out or are weakened beyond what we think we can tolerate- we rise to fight again.

Please celebrate our resilience and strength and join our fight. Spread the word. Let’s reach this $10k as quickly as possible. No matter how small, every contribution brings us closer to our goal.

If you donate even $5, please post a photo to instagram tagging #GlassBodySteelSoul and tell us why you were moved to join our fight. Find us on Facebook- Glass Body Steel Soul and post there as well!

Thank you. From the bottom of my heart. Thank you.

 

 

 

Shipt: Unlimited Grocery Delivery

As a Dysautonomia patient, I dread grocery shopping. There. I said it. Super negative out of the way and moving on to a solution. If you’re wondering why grocery shopping is difficult for someone with Dysautonomia, check out my other blog posts and resources on Glass Body Steel Soul to learn more about about this invisible chronic illness.

For my healthy readers, I mean, why not get your groceries delivered? Healthy readers write to me often about how certain issues we encounter with Dysautonomia (particularly managing energy and priorities) they understand and encounter on a lesser scale. Healthy people can make use of lifestyle hacks as well. I'm guessing a lot of healthy, busy moms would love to know an option like this exists. Get your groceries delivered on laundry day, and you now have an extra block of time to do or relax as you please.

Most people are aware that many grocery stores provide a pick up lane for groceries ordered online. It's a great option, however driving is a huge waste of my energy as is carrying grocery bags into the house (particularly on a hot, summer day).

Before Shipt launched in Raleigh, I often found myself scouring the internet for affordable grocery and food delivery. At one point, we hired a personal chef because the grocery shopping was included in the service. Obviously, financially, we had to sacrifice too much to maintain that option long term, and it wasn’t ideal to host a chef for an entire day in the house (he cooked our meals for the week all in one day). We tried several meal delivery options- also expensive and sometimes we didn’t enjoy one of the meals included. You name it, we tried it.

When Shipt launched in Raleigh, I am ready to bet that I was one of the first customers. I was so excited that I paid for a discounted annual membership before they even launched. I ordered groceries on opening day. It was better than I'd hoped, and I've now been using the service for over a year. It's proven to be an effective long term solution.

How does it work?

There are two options. You can choose from an annual or a month to month membership.

Annual Membership: $99 unlimited delivery

Month to Month Membership: $14/month unlimited delivery

After you pay your membership fee, there is no delivery fee as long as you order $35 worth of groceries (which is easy to plan accordingly).

For my business savvy and critically thinking readers who are raising eyebrows wondering how this company makes a profit…

products are priced slightly differently than in store pricing. To quote Shipt’s website, “Our members can expect to pay about $5 more using Shipt than they would on a $35 order purchased in the store themselves.”

Yes, you pay a little more. Personally, it's a welcome price to pay for the energy I gain, and I find it manageable to calculate within our budget.

From which store are my groceries purchased?

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In Raleigh, Harris Teeter. They partner with different stores depending upon location. You should be able to find this information easily for your area via the Shipt website.

Did I mention that this is same day service? You use the Shipt app to shop your order and checkout by selecting a two hour delivery window (this could be same day or for a future day).

You can choose whether the shopper contacts you for any issues or you can select for the shopper to use their best judgment.

I select the option to text me for any issues. That way, if the store is out of a certain product I can decide whether to take it off my list or select a similar product.

I have never had a negative experience with a shopper. There is a notes section for each item, so if I have a particular preference about the ripeness of a fruit etc, I simply add that information to the product notes. My shoppers have always shopped my groceries as if they were their own. My produce is never bruised or overly ripe.

I live in a condo with a gate code, and I’ve never encountered a shopper unable to follow delivery instructions. Even in a condo, they deliver groceries to my door. They are willing to come inside and place them on the counter, but I always hand off at the door since I have fur babies who get excited for visitors.

Every shopper (in my experience) is professional and polite. Tipping is an option, but not mandatory.

Where is Shipt available?

View the screenshot below for Shipt’s current service locations.

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How to get started?

Sign up for a membership by clicking here and receive $10 in groceries and 2 weeks free membership.

Download the Shipt app and start shopping!

I have found the app to be simple and intuitive. If you don't own a smartphone or love using apps, you can shop from the Shipt website as well. Check out these screenshots from my app.

Here’s to grocery shopping sans Dysautonomia symptoms!

 

Travel | Chicago + NYC

I promised authenticity always. Are you ready?

Sean had work in Chicago this week, so we planned for me to tag along and stay the rest of the week in NYC with Tanya, Sean’s sister, before heading home. We have been looking forward to May all of April because we have so many fun things planned, and we couldn't wait to catch up with Tanya and for me to finally meet Lars, her boyfriend.

I was positive that this trip would demonstrate just how much I’ve improved. Partly it has, and partly it’s demonstrated that no matter how much you improve, no matter how well you’ve learned to manage it, no matter how much time (years) you’ve invested in toning your blood vessels, Dysautonomia life will never be easy, simple, or the ultimate luxury- without strategy. Can Dysautonomia life be good? Yes. Easy? No.

Due to my unrealistic expectations, I was shocked on Friday to realize there was no way I'd be leaving the apartment that day. I happened to have an arthritis flare in my spine and ankles, so the added inflammation and pain exacerbated the expected fatigue I was already experiencing from traveling. I awoke to more disappointment on Saturday when I could still barely stand from weakness. I had been hoping to recover in time to see Lars perform (New York City Ballet- an experience on my life bucket list).

Your autonomic nervous system literally processes stress. We tend to assign “stress” both a negative and psychological connotation, when in fact, stress is simply a medical term to describe all stimuli, physiological and psychological, that is processed physically by the autonomic nervous system.

There are two types of stress: distress and eustress. Negative stressors are designated as “distress” and positive stressors as “eustress.”

Healthy people possess the luxury of not knowing the difference, since in a healthy autonomic nervous system, it typically requires heavy doses of distress (pain, overworking, family/financial problems) for people to recognize the physical symptoms resulting from it. When they do, they notice that heart rate is elevated; maybe they sweat or experience migraines as blood vessels constrict. Those physical symptoms are a result of the sympathetic nervous system, the fight or flight system, activating in overdrive.

Unfortunately, Dysautonomia bodies experience that intense sympathetic response for every stressor, eustress and distress, regardless of how much we may be enjoying the moment mentally and emotionally.

It seems everyone understands and values the concept of limiting distress, but eustress is a foreign concept for the average person (including the medical community), as it would take a complete overload for their bodies to process eustress in the exaggerated manner a Dysautonomia body does.

I've noticed healthy people often confuse eustress with rest. Partaking of an activity they enjoy, like a walk in the park or coffee with friends, is considered “restful.” Enjoyable, yes. Restful, no. It's a wonderful luxury to not understand the difference, but rest and eustress are in fact separate entities and processed by the body uniquely. Healthy people would do well to comprehend the delineation and use it to their advantage during times of distress. If necessary or unavoidable distress exists in your life, you should eliminate unnecessary eustress and replace time previously allocated to that with rest. It's simple health science and logic that is often ignored or worse, devalued.

Contrary to cultural stigma, rest requires discipline because the average person prefers the mental stimulation of eustress, myself included.

I am blessed with the most compassionate friends and family who would literally sit all day on the couch with me when their schedules allow.

However, once I feel a crash coming on or if I've already crashed, such kind and selfless offers are not practical. My body has zero energy left to process eustress even in the form of hanging out with a best friend on the couch. I mean I can do it, but it's just going to delay my “recovery.”

I preach no shame in chronic invisible illness, and 99% of the time I live by it. Occasionally, when I am out of my element, or growing aware of an impending crash, I am embarrassed.

Everyone is understanding. Everyone is kind. Yet, the fact that being around other people, even in its most enjoyable moments, is eustress that my autonomic nervous system is overly sensitive to, is highly embarrassing to me no matter how much science validates that this is not psychosomatic.

I'm not embarrassed by the symptoms; I'm embarrassed by how I must recover from or avoid a crash. Realistically, at a certain point of stress on my body, ideally before symptoms get severe, I know I need to be isolated from any stimulation, positive or negative. There are instances when this is so severe that I cannot even watch tv or read to entertain myself. The only method to effectively rest my autonomic nervous system is to stare at a blank wall, empty my mind of both types of stress (meditation), breathe, get as horizontal as possible, and hydrate.

So when I crashed on Friday, I knew immediately how severe it was, and I also knew I needed to either get home where I could hole up for a few days or check into a hotel where I could do the same thing. My mom saved the day and booked us a room with her hotel points.

I have the most understanding and gracious sister in the world who had already given us her room and bed, who doesn't expect me to explain. Yet, who wouldn't worry that the need to be completely isolated from people and stimulation is off-putting?

You're essentially telling people that they are stressful… except that's the negative misconception I fear rather than reality. That possible misconception is my most significant fear in all of my relationships.

To me, social interaction is enjoyable and pleasant eustress, but my body processes it in sympathetic overdrive. I would do anything to change this, but it is the reality of my malfunctioning body, and the source of my greatest insecurity.

So here's where strategy comes into play. Since my quality of life has improved so much, without recognizing it, I believed that I would no longer be sensitive to eustress while traveling.

I know now, when traveling, I need an option for complete isolation which hopefully, just like at home, I can practice in small doses to avoid the kind of crash that happened on this trip.

Sean and I both tricked ourselves into believing I could handle the eustress of being a houseguest.

Sometimes, when you want something, you ignore the facts.

We both want to travel more, and being a houseguest financially makes frequent travel feasible. It was a lovely little dream.

Reality: I added the stress of travel while simultaneously eliminating my primary management system- an isolated home base. And I expected this to be the best trip of my life. I'm genuinely laughing reading this- that is the most unrealistic, illogical fantasy.

This travel thing is going to be great, and it's going to be a major facet of our lives. We are not giving up the dream. We’re regrouping, and like everything else we’ve handled as a team, Sean and I will improve our strategy for the next trip.

Moral of the story for my Dysautonomia friends: 

Don't neglect your desire to travel or do anything else that seems impractical given your circumstance. Go for it! But don't pretend for one second that you can leave strategy at home.

There's vacation from home; there's no vacation from Dysautonomia. Don't trick yourself into believing that your body will play by different rules once you're on vacation. The more we can practice full acceptance of our reality, the more we can realistically strategize to enjoy many of the experiences this beautiful life has to offer.

Lifestyle Hacks

In tomorrow's post, I’m excited to share one of many lifestyle hacks I discovered through twelve years of battling Dysautonomia and learning to live well with an incurable (currently) chronic illness.

It will come as no surprise to Dysautonomia readers that the first dilemma I will address is the grocery store. Everyone who has Dysautonomia knows exactly why this is an issue. But for awareness purposes, allow me to explain.

Your (healthy) autonomic nervous system enables your body to stand upright whenever you please, expertly fine tuning blood pressure, heart rate, adrenaline, circulation, and a host of other functions that allow you to accomplish the basic tasks of your day.

Imagine if your body did not automatically make these adjustments or overcompensated causing your heart rate to spike and blood pressure to drop every time you stood upright. Simple tasks like shopping are no longer simple. They are mountains to be climbed and debilitating symptoms to be stoically ignored.

However, this is merely one of our many mountains to climb on a weekly basis, and we can push through our autonomic dysfunction for only so many hours before we crash. And if we do push to a crashing point, our recovery (time literally spent lying down) lasts even longer.

Think of it as a checking account. There’s only so much cash available, and if you overdraw, there’s a fee.

I use positive terms as often as possible, but in this case, there’s no avoiding that we “pay” for everything we do, no matter how basic. Yes, there’s an entire world of beautiful positivity to be found within this difficult reality, but to arrive in the land of sunshine and rainbows you must first acknowledge that this new reality does in fact suck and likely, you will need to take a little voyage to the island of grief.

I refuse to invalidate your experience by skipping over the heartbreak for the sake of positivity.

Hope is not turning a blind eye to a difficult reality. Rather, hope is recognition of the incredible ability our souls possess to adapt and grow within difficult circumstances.

Healthy friends, imagine if you could only perform the necessities of your life. No social time. No dinners out. No leisurely walks on the weekend. And if you did choose to engage in one of these “fulfilling” activities, it means you give up something necessary like grocery shopping, exercising, or washing your hair. Imagine living in this manner for a lifetime.

How would you feel about these choices? Washing your hair or cleaning your house? Buying the groceries or cooking dinner? Cooking dinner or washing the dishes? Walking the dogs or exercising? These are just a few examples.

In addition, Dysautonomia patients never get a vacation from thinking this way. There are no days off. Even if patients handle this crazy making level of prioritizing well, they are bound to suffer emotionally at some point.

For me, the breaking point was 2011- I was 21. The anxiety hit fast and hard. Imagine prioritizing is managed by a muscle. And like any other muscle, it needs rest in between use to recover and grow stronger. My prioritizing “muscle” became fatigued and eventually froze. My brain could no longer process that I must choose between washing my hair or leaving the house. Instead, I froze with anxiety, paralyzed at the thought of making another decision about something I should be taking for granted.

I cried over my loss of self expression. I recognized that much necessary self expression is perceived and experienced through our daily choices in how we spend our time.

After recognizing the symptoms of anxiety, I scheduled counseling. I was not aware of the grief component until my psychologist compassionately informed me.

Honestly, it’s pointless to attempt prioritizing if you’re in denial about how difficult and often sad your new reality is. After working through these emotional issues with a professional, it becomes possible to sit down and set your priorities with a clear head (ps the emotional work is continuous).

What if, after taking time to work through our valid emotions, we strategized how to spend our limited upright time on the things that actually fill us emotionally or strengthen us physically?

THAT is what my lifestyle hacks are all about.

How can I rearrange and reprioritize life to spend my limited energy on the things I love or need to feel fulfilled without neglecting the necessities of daily living?

For too many years I felt there was no answer to this question.

Often, there’s not a good answer. Almost all solutions involve sacrifices and extreme prioritizing:

predominantly of financial nature because we learn we must budget our lives around the tasks we can pay others to perform for us. But what of those who are barely making ends meet? My heart breaks for you, and I hope some of you will contact me to guest blog your experience on issues to which I cannot directly speak. I want to hear from those patients whom the burden is solely on you. No spouse, parents, or siblings to provide for you. I know the toll it takes on our finances, so I can only imagine the sacrifices you must make. What advice do you have for the Glass Body Steel Soul community?

Sean and I budget fiercely. Sean provides for me financially so I can manage my health. We are blessed with parents on both sides who would never allow us to end up bankrupt or homeless if the worst occurred. Yet still, we are two people living on one salary, and we often find ourselves stressed over finances and medical expenses. Just this morning we paid $800+ in medical bills. That number does not even include medication expenses.

I say this to acknowledge that many lifestyle hacks I will write about may not be financially feasible for some readers. I do not pretend to speak to your situation and invite you to come forward as guest bloggers on Glass Body Steel Soul.

My lifestyle hacks can be of great value to those who find themselves in a similar or better financial state than me. Not all lifestyle hacks will involve finances, but I feel a need to address the financial reality up front.

Check back in tomorrow for my post about Shipt: a grocery delivery service. Yes, you read that correctly: unlimited grocery delivery for a reasonable annual price.


 

Rachel | Love Food Raleigh

Love Food Raleigh Catering: the amazing team behind our tapas at Bend & Brunch. If only we had photos of every single delicious item. 

The menu:

Mini Quiche: home-grown kale & roasted tomatoes

Fruit Salad: grapefruit, oranges, & pomegranate (let's not forget the honey drizzle!)

Kelly's Deviled Eggs

Nutella, Avocado, & Pimento Tostadas

Mini Country Ham Biscuits

My favorite? It's a tie between the mini country ham biscuits and the Nutella tostadas.

I met one of the founders, Rachel Popov, through yoga and have been on the receiving end of her encouragement and goodness ever since. I remember the first time we hung out, just the two of us, I was experiencing writer’s block (fear of being authentic). She has this gentle yet direct way of seeing past BS to the core of a person or issue. I value that insight and have used it to improve myself in more ways than she may realize.

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also, bend & brunch was her idea! ...

 

In her classic Rachel chillness, she asked if Love Food Raleigh could cater a brunch to raise money for our cause. Having never thrown an event before, I was feeling intimidated by the road ahead. Her stepping in and saying, “let’s do this” gave me the courage I needed to step out and go for it. Also, her absolute chill and ability to take everything in stride is the perfect balance to my all too often type A personality.

The community of women in Raleigh is something special.

Rachel is one unique example of women empowering other women… and I am inspired to say that she is one of several in this Raleigh community who has personally empowered me to take action for my cause.

Women of Raleigh, keep doing you. Keep empowering the women around you to transform visions into realities.

Love Food Raleigh team, your delectable skills are everything and more. If you missed these mouthwatering tapas, don't fret, Love Food Raleigh will be catering for Glass Body Steel Soul events in the near future. See you there.

My Doctor | My Inspiration

This woman: Dr. Camille Frazier-Mills. Of course I can list her amazing credentials and accomplishments. She has them all, and they speak for themselves. Here’s what you may not discover  on a resume or a google search:

This incredibly skilled and intelligent woman radically changed my life and perception of what it means to be a patient with a chronic illness. I will never forget my first clinic visit with her at Duke Syncope & Dysautonomia Clinic.

I lost hope that anyone local could help. I was begged by my mom to reach out to Dr. Carboni, the pediatric cardiologist who originally diagnosed me and compassionately managed my health even though Dysautonomia is not his specialty. Per usual, he saved the day, informing me that Duke recently launched an adult clinic for Dysautonomia patients.

I still remember that first appointment, arriving skeptical, unwilling to hope that a new doctor might actually help me. I prepared to teach Dr. Frazier Mills about Dysautonomia. I remember promising myself that no matter how bad the experience was, I would not cry in the car on the way home. Instead, I was treated to a life altering surprise.

Not only did Dr. Frazier Mills know far more about Dysautonomia than I, she educated me about other forms of Dysautonomia I had yet to research. She hit the ground running, ordering tests, altering and adding medications in the most deliberate and intelligent manner. And while she understood that a cure is not a current possible outcome, she cared if my quality of life was improving.

Through previous experiences, I was trained not to notify doctors when I pass out. Too often I was informed that it is not life threatening or curable, so tough luck. No one before Dr. Frazier Mills (excluding my amazing Duke pediatric team) appeared to care about how this affected my quality of life. All others lost interest as soon as they concluded that I was not in fact going to die.

During the first few months at the clinic, I was still passing out at least a couple times per week, and during tough weeks, daily. I suffered a few injuries during this time from incidents such as passing out on top of a glass coffee table. I mentioned the frequent syncope offhand in a follow up appointment. Why offhand? Still, even in a qualified clinic, I had yet to relinquish the strategy of downplaying symptoms so that doctors and nurses would not label me “hypersensitive."

To my pleasant surprise, Diana, an amazing nurse in the clinic, consulted Dr. Frazier-Mills about the frequent syncope. After discussing, they asked that I message them whenever I passed out. Once home, I cried tears of gratitude. They asked me, a patient, to bother them with my symptoms. For the first time in too long, I believed that maybe, just maybe, my quality of life is worth fighting for. Maybe I deserve more than the “be grateful you’re not dying” speech. They earned my trust forever that day. It is not often that medical professionals treating chronic illnesses go the extra mile to solve a medical mystery.

This experience in particular demonstrated that Dr. Frazier-Mills and her team are no ordinary medical team. They are exceptional in knowledge, skill, and empathy.

They eventually discovered my pacemaker’s rate drop function was turned off by a previous doctor who was not familiar with my unique pacemaker settings. After correcting this, syncope episodes decreased to one or two times per month, allowing me newfound energy to research and experiment with alternative physical therapy modalities.

Dr. Frazier-Mills never needed to say the words, “you and your quality of life matter.” She demonstrated with her actions that I am not just another chart, another nuisance in a long clinical day.

She and her team fought for me after I stopped fighting for myself. I will never take that gift for granted.

If you are a patient without a specialist, about to give up and resign to your lot, mostly trapped in your house but assigned to be grateful that you’re not dying, please, do not give up.

You matter. Anyone who has the luxury to stand whenever they please has no place telling you that “it could be worse; be grateful it’s not life threatening.” You deserve a doctor who will fight for your quality of life. You deserve a Dr. Frazier-Mills.

I am honored to announce Dr. Frazier-Mills will be taking a seat on the board of Glass Body Steel Soul.

I hope to be more like her with each new day: intentionally, intelligently, and compassionately fighting for Dysautonomia patients.

 

Facing The Future

Honestly, for most of my 20s, the idea of the future, living with a chronic illness permanently, scared the hell out of me: full on anxious disbelief that this is permanent.

It sounds naive, but when I was bedridden for a year in high school (passing out 6 times per day, basically every time I walked to the bathroom), I had a lot of time to think about my future. Without realizing it, I always imagined my future without Dysautonomia.

That's probably why I handled it so "well" and didn't seem “down” to anyone.  They called me "strong.” I know now that I wasn't strong; I was numb. Numb of disbelief. I was unable to heal emotionally (& own my true strength) until I recognized that and allowed myself to walk through the stages of grief.

When I was homebound, I refused to have a TV placed in my room. I claimed it would encourage me to take advantage of the situation to read more than usual… and I really did take advantage of that time.

However, partly, I was determined to prove I was not what others might assume upon first glance: "lazy, attention seeker, whiner, listless, unmotivated.”

You see, it sounds fun not to go to school or have to work when you're all grown up. But in reality, it's crazy scary to seemingly have your future stolen from you.

Before my compassionate & skilled Duke pediatric team with Dr. Carboni, I was accused of being sick because I was deconditioned from "laying around all the time" based on the "fact" I was no longer an athlete, even though my symptoms started long before I quit swimming. Yes, I was deconditioned, but through no fault of my own. It is acceptable to say that my blood vesssels are deconditioned because of a connective tissue disorder. It is unacceptable to blame deconditioning on a sedentary lifestyle mere weeks after a patient is no longer a competitive athlete. I quit swimming BECAUSE of my symptoms. And I only quit when I could no longer endure inducing such severe symptoms on a daily basis.

This circular reasoning and cognitive dissonance that occurs within many clinics, as well as much of the “research” and language regarding Dysautonomia still frustrates me… but I will continue to transform that frustration into action.

The shocking current reality (in many clinics who do not specialize in this):

Go to counseling to deal with this life changing disability? MD writes off internal dysfunction as psychosomatic. Shed a tear in the doctor's office? Depression is the cause, not a symptom of grievous loss of health. Yes, fatigue is a symptom of depression. But vomiting and passing out daily?

You're likely reading thinking, “This situation cannot be for real!” But it is. It is all too real. And my story is not the worst experience you'll read. It's likely more difficult for the many POTS patients who don't pass out yet feel truly terrible. At least if you're syncopal, most doctors take you seriously initially. You're not completely invisible when you pass out. Things don't go south until they realize you're not a “fixable” case.

Patients may remain marginalized and slip through the cracks forever if major changes do not take place within the medical community. Doctors of all specialties must continue their education and adjust their bias against patients, particularly women.

I am not a wimpy, whining, hypersensitive girl. I am a strong ass woman telling you I had to crawl around my house in order to go to the bathroom without cracking my head open while Sean wasn’t home.

Doctors, do not call me "hypersensitive" or "hypervigilant" in reporting symptoms that disable me. Eliminate this language from your esteemed medical journals.

Community, ask questions.

That guy who, during more disabled days, called me a lazy b**** in front of everyone at the supermarket for parking in the handicap spot didn't know I saved up all my energy for a week to run that precious errand.

Hard core Christians, do not tell me I need more hands laid on me, as if I have too little faith.

Other patients, let's not make these same mistakes with each other. Some of us appear "worse" or "better" than others, but the reality is, we have no idea what each patient had to give up and how hard they had to fight to be where they are now. Maybe they're at their worst or maybe it's been a decade's work in treatment and life adjustment.

Without asking questions, the only full story we know is our own.

Clinical or layman, start every conversation with questions rather than assumptions or accusations.

Are questions not the foundation of all science? Is compassion not the call of all doctors?

Doctors, emulate Dr. Frazier-Mills. She does not call me "hypersensitive" or treat me as a nuisance. She calls me an "inspiration."

I never thought a doctor would compliment me in such a way.

In addition to listening to patients and treating them with compassion, her team created an emotional support group for the Duke Syncope & Dysautonomia Clinic. Sometimes I forget just how groundbreaking that is.

Doctors, often, it requires one positive experience to heal a multitude of negative. Never underestimate the power you hold.

It is the power to give hope or tear down.

Give those you encounter the benefit of the doubt. Ask questions. Breed hope.

The Story Behind Glass Body | Steel Soul

I have lived with Dysautonomia (POTS, EDS, Vasovagal Syncope, Reflex Anoxic Seizures [RAS]) for approximately 12 years. Before Dysautonomia, I swam competitively 9 times per week and ran cross country for fun.

This is a photo of me at 15. Clearly not a lazy or deconditioned person. However, you may be surprised how many physicians’ notes labelled me as deconditioned within two weeks of quitting swimming. You see, due to lack of awareness, Dysautonomia patients are often blamed for their disability before being diagnosed.

Honestly, I still struggle psychologically and emotionally as a result of such blame being placed on me. I was told more than once that I was an overly sensitive teenager who was growing rapidly. I remember struggling to take the stairs in between high school classes, thinking, “Why am I so weak? Am I going crazy? Why is no one else sweating and short of breath?”  I’m not sure how physicians thought “rapid growth & hormones” explained daily vomiting, frequent syncope, reflex anoxic seizures, and incredibly debilitating chronic fatigue.

Ironically, expert physicians have compared Dysautonomia patients’ quality of life to that of congestive heart failure patients.

Can you imagine living with congestive heart failure, struggling to perform the most basic parts of your day, and a medical professional then informs you and your family that your symptoms are all imagined or fabricated? These errors in judgment have crushed souls and isolated patients from their friends and family.

I am blessed to be diagnosed so quickly- with parents, siblings, and friends believing and supporting me every step of the way.  

Yet still, I am one of the lucky ones, diagnosed at Duke Hospital within a couple years of symptom onset. Within the support group at Duke, I encountered patients who suffered ten years before receiving a diagnosis. I met people who were dismissed by family and dear friends. Even with the hell that I went through, it could have been so much worse.

Thank you to my parents who were advocates for me when I could not be one for myself... For choosing to believe their daughter over the opinion of a physician. I hope to be that advocate for those who are not blessed with the same support.

Sean, my husband, is another supporter who has made Glass Body | Steel Soul a reality.

We met in middle school and began dating the year after I was diagnosed with Dysautonomia. In fact, I was homebound my sophomore year of high school. To this day, I cannot comprehend why he wanted to date the sick girl who was missing for a whole year.

Actually, our first date was in 9th grade. My sweet momma in law drove us to play putt putt. I wore a sling because my first pacemaker had been recently implanted (as a 15 year old).

Most boys would have gone easy on me. Sean, barely beat me and continued to gloat about it for years. Apparently, he kept the score card all this time. I loved that he didn’t seem to see a girl with a pacemaker. He saw me for who I was, underneath all of the crisis I was going through.

He saw past the glass body and treated me like the steel soul that I am.

However, we didn’t start dating until two years later.

After we married, our relationship and lives turned upside down. The summer of 2010 was brutally hot. I couldn’t walk across a parking lot without passing out or going pre syncopal.

Let me be clear, Sean has a heart of gold, and we love eachother dearly, but this was not an easy adjustment.

Loving someone does not make sacrifice easy. Worth it? Yes. Easy? No.

And Sean sacrificed more than I could ever express on paper.

Sean will tell you, no matter how much time you spend with someone who has a chronic illness, it is impossible to fully understand how limited they are until you live every day by their side.

But we learned. We grew. We changed together. We somehow made each other stronger.

Sean grew to become my fiercest, most loyal advocate.

He moved us out of our first apartment into a little townhouse with no stairs, a built in shower seat, and an attached garage (so I could independently go to drive-thrus during the summer).

He realized, long before I did, that if we ever wanted to experience the semblance of a normal, quality life, we needed to be strategic… about everything.

In addition, I was determined to work and attend grad school. Every little part time job I tried ended quickly and poorly. I simply didn’t possess enough upright hours to work.

Sean started his small business, Soccer Genome while finishing school. The business was performing well, but we needed a second salary to get by and manage medical expenses.

I felt distraught, hopeless, and anxious. I found myself ineligible to receive disability benefits because I paid some income taxes yet not enough to qualify. Had I never worked, I would be eligible for disability benefits through my parents.

Again: ironic, right? Trying your best to be a productive citizen after becoming disabled in highschool can disqualify you for disability benefits.

And then, Sean came up with the strategy that changed my life: he hunted for a corporate job in addition to running Soccer Genome.

He requested I drop my pride and quit searching for jobs that I could physically “handle.” He asked instead, that I manage my health as a “full time” job while he took on a second one.

After some convincing, I took my new job title quite literally.

I possessed limited hours upright per week, so I utilized them to my advantage. I set strict priorities… by far the most challenging adjustment in living chronically ill.

I learned to say “no.” Often, physical therapy was the only activity I could tolerate for 24 hours. I only allowed myself to say “yes” to commitments pending I had completed my physical therapy for the day. For a while, physical therapy and personal hygiene was my entire day.

Bonus points if you pause here to imagine living that reality.  

Sean’s sacrifice allowed me to prioritize my very demanding health needs.

Without his sacrifice, I would not have researched physical therapy options. I could not have designed my own physical therapy protocol, increasing my upright hours to 45 per week and still growing.

I would not have the opportunity to test my physical therapy theory on other Dysautonomia patients within the Duke clinic.

So, yes, this blog is for those living with Dysautonomia. But it is also for the friends, parents, husbands, wives, sisters, and brothers of those who love someone with a chronic illness.

 

Never underestimate the power you hold to change the world for someone else.

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Dedicated to my person, Sean.