My Five Year Journey to Getting the Right Diagnosis
2015 was going to be the year I finally ran the Los Angeles marathon. As a native Angeleno, it’s one of those things many of us want to check off our bucket list. I started training in July and had worked my way up to eight and even 10 mile runs by November. I felt the strongest I had ever felt and was running distances that felt impossible, which allowed me to translate that confidence into other areas of my life.
On one particular night, I got ready and headed over to Evergreen Cemetery in Boyle Heights, a popular spot for runners. I stretched and started my run but my legs were in so much pain that it was hard to walk. At the time, I thought that maybe I had pushed myself too far with training. I couldn’t even finish a lap, so I decided to go home and soak in an epsom salt bath, hoping that it would soothe the soreness. Almost a week went by and nothing changed. On top of that, I started experiencing heart palpitations. As someone who has lived with anxiety I had experienced them before, but this was different–it felt like a physical reaction and not something tied to my mental health. I was able to get a hold of a heart rate monitor and found that my heart rate was hitting 170 beats per minute as I lay completely still in my bed. To put it in perspective, your heart rate is at 170 when you are running full speed at the gym, something I knew from years of running. This was when my trips to the emergency room began.
My legs were shot, I was experiencing heart palpitations daily, and in a course of two months I gained over 60 lbs. I knew something was wrong but I didn’t know what. Because of my health conditions, I lost any work I had coming in as a freelance web designer and social media strategist. I could barely function and the loss of income didn’t help me feel any better.
I spent my time crying and feeling like I was losing my mind and endlessly searching for answers on Google and Web MD. At different points I thought I had adrenal fatigue, thyroid issues, and even a hormonal imbalance. I tried to cure it by changing my diet and still nothing changed. I remained persistent and saw different doctors, both Western and Eastern, almost every healer you can name. The worst experience I had was going to see a female doctor who was also a woman of color at a local community hospital in East Los Angeles. I thought I had finally found someone who looked like me and would help me get answers. Instead, I was asked, “Do you even know what exercise is?” I’m a very patient person but this question left me fuming. This doctor proceeded to diagnose me with depression and wrote me a prescription for antidepressants without doing as much as a physical on me, let alone any blood work. At that moment, I felt so angry. Not just for me, but for the vulnerable community I knew this doctor was working with daily. Having one doctor be dismissive feels frustrating, but having over 30 do the same left me hopeless and eventually immobile from depression.
That’s why in May, as we all live through a global pandemic, I came across a tweet from Karla Monterosso and instantly felt a wave of anger all over again.
Monterosso had been sick in bed with COVID-19 for over two months. As we’ve all heard by now COVID-19 is affecting Latinx and the Black communities at alarming rates. She was at Alameda hospital in Northern California, and was seen by a physician who was ready to discharge her without giving her as much as an exam. But Monterosso and I have something in common. Neither of us gave up, and, like myself, Monterosso had people in her life that could advocate for her. Her family and friends were making phone calls and watched on Facetime as this doctor behaved in an unprofessional manner, even going as far as to yell at her. She was able to be transferred to a hospital in San Francisco and is now recuperating at home but reading her thread left me feeling so emotional and reminded me of my own experience.
Immediately, I reached out to my Tia Lourdes, who is better known as Doctor Adame, who works at a hospital in Southern California. I wanted to ask her how we can become better advocates for ourselves in case we face the same kind of treatment.
She shared with me a few things, the most important being that all hospitals have patient rights posted visibly and it’s also always part of the packet you sign at the hospital. You also have the right to have advocates on the phone and for the hospital to provide a translator in any language. If you feel hesitant about your nurse you are always able to request to speak to the charge nurse. “It’s important to file a grievance,” shared Adame, in regards to cases like Monterosso’s. “If patients don’t file those then the hospital might not find out about what happened.” The best thing you can do is educate yourself on your condition, and you can ask your primary care doctor to help you learn more. This will be your most important tool available for you in advocating for your health.
I wish I had been as vocal as Karla or knew more about my rights as a patient. Advocating for myself felt intimidating without having the knowledge and tools I know now. I finally found out on a fluke in 2019 that I had a very severe wheat allergy. I brought up my symptoms to my primary care doctor and she, like the rest of the doctors, just told me to restrict my eating and exercise. I happened to tell her that no over the counter medicine was working for my seasonal allergies. That’s when she ordered a blood test for allergies, which finally showed the wheat allergy. I’ve been able to cut wheat out of my diet but I’ve had a few issues with cross contamination. When I have even a crumb I wake up feeling hungover for two to three weeks. Although it’s been a year, I’m still not where my health was before my symptoms started. I often think, what would my life be like if the first doctor I saw believed me? I recently ran my first mile in over 6 years, and this gave me hope that my body is finally healing.