"In my Head" or Just Rare? - Zebra Exists
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In today's episode, we are diving into the topic of gratitude. They can not only help you to maintain a healthy and happy mind, but it would also improve your music performance. we will discuss why gratitude improves our brain function, how to cultivate this attitude of gratitude, and how to having a grateful heart to all things in life.
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The science of Gratitude
In Your Head? Or Just Rare
Today is Rare Disease day, it’s time to look back at the last 2 and half years. And using this as an opportunity to tell my story, where I have been, how far I have come, and what now?
So for anyone new to this podcast, I am a violinist and DMA student. I started this podcast to talk about mental health and self-discovery as a musician. When my health, especially my physical health, deteriorated in the fall of 2020, finding the medical diagnoses became my mission. I was thrown into this unfamiliar world of the medical field. I became my only patient advocate for myself. I worked harder than preparing for my qualified exams. I spent nights researching, documenting, appointments, and testing.
So due to these health issues, I was experiencing, I stopped making podcasts 2 1/2 years ago, and not only the podcast, but also my academic work was put on hold.
From a blond Amy to back with dark hair and in a wheelchair limited movement in my arms and hands. I am just as curious as you guys, like how did she get here?
Of course, now I know that I have hypermobile EDS, POTS, MCAS, tethered spinal cord, MALS, and other common EDS comorbidities that aren’t so common in general populations. Wait wait wait, all these acronyms, all these comorbidities? That’s how many general physicians would say…but here I am. Not only the comorbidities, but spine complications also made me from standing, walking, and jumping person to using a power wheelchair having the only no movement from shoulder down.
so that’s a rewind to the end of 2020 when everyone is blaming long-haul Covid for my symptoms when I haven’t had COVID yet. When I still like to believe mental issues as the default and the only answer to my hard-to-comprehend symptoms.
I had a bit stressful time at the beginning of September 2020, at the time, I didn’t know I have EDS, or POTS, postural orthostatic tachycardia syndrome, as a self-help fanatic, I decided to try the flow tank, also called deprivation tank. They use magnesium and salt to let your body flow in the water. besides, the beginning was a bit painful in my neck area. It was a very calm serene experience, But not till I came out of the tank, I felt unstable in my neck as if without holding onto my head my neck will be like a wet noodle going all directions… That lasted nearly an entire week. I know it's unusual, and all my chronic issues flared up after. But I initially felt hesitant to share this story with my doctor, because why would my non-epileptic seizures have to do with a float tank experience, or POTS, or my later paralysis in the legs? I was so afraid of sounding like I’m insane or hypochondriac.
Because of my medical PTSD from previous mental health services, I was feeling hopeless in the beginning. after my float tank and a week-long unstable neck experience, I started having sudden drop attacks. Palpitations certainly felt like I was having an anxiety attack, except out of no reason/ or triggers but I was just standing while having a normal conversation on the phone. Being told for the last 8 years that I am just anxious if I have an eating problem or GI issues, I’m just depressed, and if I feel a bit down or fatigued, it is a mental illness. So I felt like all the good work meditations mean nothing. I basically went back to square one.
Then things really got weirder. I had a prolonged fainting spell, and my husband had to drive me to the ER. Of course, I didn’t know it was an MCAS and POTS flared up. No one in the ER took precautions to protect my neck. I was fainting in the ER wheelchair with a hyperextended neck for two hours in the waiting room. I felt extreme pain each time I woke up from my syncope. So instantly, I started having the ER physician call “abnormal movement” or “ pseudo seizure” aka it is psychosomatic. They gave me some itching medicine, also an anti-anxiety pill, and sent me home.
My life after the ER visit was an average of three ambulance trips a month because of the mysterious seizure. So many tests came out negative. When all the testing’s coming back negative, Even now I go to my local university hospital having appointments, this is still the end of their comments: you are a mystery. We don’t know what’s going on with you. and using that psychosomatic word to cover all my broad-spectrum symptoms, I was just as lost as the doctors. I was almost convinced, as maybe things are just in my head, again. But just as I was searching for non-epileptic seizures, some YouTube videos of some girls surfaced and lead to the conversation about EDS- Ehlers-Danlos Syndrome. It was overwhelming, not because I don’t know about this term of a genetic condition, it was because so many symptoms have been manifested years ago in my life. This is the first time I was so excited to know that I am actually hypermobile. I had a Brighton score of 9/9. I videotaped my stretching ability. I finally have a better understanding of how the syncope is related to my POTS. I might have gone a bit obsessed with my heart rate…but the heart rate under the influence of POtS and MCAS is much more wild when I eat something wrong, or do something too much.
I had a very understanding, osteopathic doctor, who introduced me to a geneticist immediately after our visit and discussion about hypermobility. The average time to diagnosis of an Ehlers Danlos syndrome or hypermobility spectrum disorder is 10 to 12 years, for some, it can take decades. Although it took me only two months to get my EDS diagnosis from me bringing it up, I did not know about EDS for the first 16 years of my life when I started having symptoms.
Overall finding out my EDS diagnosis is a good thing. It gives me an understanding of why and how the faulty collagen produced to build all the connective tissue including skin, joints, blood vessels, and dura for the spinal fluid can be affected.I repeatedly had two CSF leaks three months apart, with horrible positional headaches and vestibular dysfunction. I didn’t even get any lumbar punctures, it was spontaneous as EDS dura is quite delicate and not strong enough.
I don’t think my medical journey has been all negative. Several amazing doctors helped me step-by-step also finding out the diagnosis of my eating issues, MALS stands for median arcuate ligament syndrome. My decade long on and off eating problem turned out to be those irritated nerves caused by hypertrophic median arcuate ligament; not only does the ligament irritate those celiac ganglion nerves, pressed on the arteries that disrupt the blood flow, but mainly made my eating so painful. Even the day before the surgery. I still asked the same question what if the doctor open up and realize that I don’t have those inflamed nerves? I am too used to doubting myself and believe those physical symptoms are just in my head. But as soon as I was asked to push into my upper abdomen, immediately, a sudden rush of pain came up the same as after I ate a small meal. And that was my first surgery. I felt validated when I saw the procedure notes “ all the visible nerves are inflamed” and remember the previous Vascular Surgeon kept telling me I do not have MALS this problem. At that moment, I felt proud and grateful. Grateful for my care team and the entire chronic illness community.
At the time of the surgery, which was last May, I was already a C4 incomplete quadriplegic, so in my case, the year of my official diagnosis is also the year I became paralyzed and continued to progress upward.
And the story repeats, negative tests, negative imaging, as I just said, a diagnosis does not solve anything. It helped with my symptom management. And maybe, sometimes, giving me a voice in the doctor's office. When I say, sometimes, because nine out of 10 times, I will find doctors. Seemingly, listening and end our visit without answers but an instruction of “keep monitoring and follow up in 6 months” like that, stepwise, from hip pain to right side weakness, I became quadriplegic with nearly no active movement from shoulder down.
But if you ask me are you still a violinist? Do you still play? The answer is yes, I never stopped playing from the very beginning of my paralysis, I continued teaching, and performing, even more frequently. Because if you don’t know what will happen tomorrow, why wouldn’t you do things you are most passionate about?
So this is not the end of my medical journey. I am about to go on my second surgical adventure for releasing my tethered spinal cord. It is literally less than 14 days. I am excited about the surgery and outcome even if it only halts the progression.
Going back to the topic of today’s rare disease day. Although zebras are rare, we do exist. Just like my tethered cord neurosurgeon said I only saw two girls before you that had sudden paralysis and were a lot younger than you. But of course, I’m not saying that it won’t happen to people who are adults. “Keep an open mind, please listen” would be my wish to all health providers.
Let’s continue our conversation about my medical journey in my next solo episode where we focus on talking about my paralysis and how I manage my energy now.
And of course, this podcast is still about our musician’s life. However, we will bring more guests who are musicians with disabilities. I want to bring awareness to the music community to see this minority group of equally talented people, what issues we have encountered in terms of accessibilities, inclusivity, and how we manage our disability as each individual to accommodate our music career.