Cure CF Spotlight: Alyssa Jean Schroeter

AGE: 35
LOCATION: Los Angeles, CA

Today, Alyssa is telling her own story. This spotlight will be in her words. Please make sure to check her out on Instagram below!

I’m a dancer at heart. I LOVE to dance! The biggest blessing during Shelter In Place has been that my favorite dance instructors didn’t miss a beat, they started teaching class online right away. Live classes have such a vibrant energy that make me feel connected to a bigger pulse. When I dance I feel closest to my true self outside of any label given to me. I’m a huge advocate for the benefits of physical healthcare, but also the benefits they provide to your mental and emotional care as well. With a constant focus on our bodies, there is not nearly enough emphasis placed on the importance of supporting our emotional selves. Thankfully there are numerous studies that prove visualizations, meditations, and mood have a HUGE impact on your immune system and organ health.

I am the only person in my family diagnosed with Cystic Fibrosis, and it came as a complete shock to everyone when it happened. While my parents absolutely did the best they could to support me, ultimately it came down to me learning to educate and advocate for myself. My grandmother practices holistic medicine and she and I developed a special relationship that transcended us being related that I am forever grateful for. Through her I was introduced to a holistic approach to medicine outside of the western world I had grown up in.

I was sick A LOT as a child, but it wasn’t until I had a chronic cough from age 11-13, followed by two polyp removal surgery from my sinuses, that a sweat test was suggested. I was diagnosed with Cystic Fibrosis at age 13. After the second test came back positive I was brought into a room with a map that had a series of red thumbtacks. The doctor took a thumbtack and stuck it into the upstate NY region, explaining that the thumbtack represented me and now I could see how many other people had it in the world. Before knowing my mutations, he gave me a blanket definition of Cystic Fibrosis. I was told that the average life expectancy for anyone living with CF was 30, most likely I would never have children.

This was the first time I was made into a blanket statistic and I choose to remember it as one of the best moments of my life.

The level of comfort I have become accustomed to does not compare to the general populations. The general population gets frustrated when they are inconvenienced by a cold. I have a different baseline for “normal.” I don’t know what it’s like to feel “ok.” It’s difficult to answer seemingly normal questions like “How are you feeling? Rate your emotional state.” As compared to what? It once took me three days of walking around not feeling well to learn that I had a pancreatitis. And the only reason I went to the doctor was because the manager at the bar I was working at said I didn’t look right. 

It’s all part of my ebbs and flows. My lungs and pancreas have been compromised numerous times throughout my life. As a teenager I suffered from depression and was diagnosed with Distal Intestinal Obstruction Syndrome, DIOS, which makes perfect sense to me now. Our “second brain”, our guts, have their own nervous system that communicates with our brain… The correlation between anxiety and stress and GI health is a vicious cycle.

My lung function remains high except for when I have a pseudomonas flare up because of the work I’ve done for myself nutritionally, holistically, and my genetic mutations. What’s hard is hearing I am TOO HEALTHY to be eligible to take any of the latest drugs on the market. The course of treatment I have carefully crafted for myself, however successful, has given me a new label of a “difficult patient.” I am my own best advocate, and NO ONE knows my body the way that I do. I say that not to downplay doctors, but in the hopes of encouraging discussion because without their efforts for me, I wouldn’t know the science and the numbers. In the same way, without my participation and vulnerability during appointments, they can’t understand what’s possible outside of the data they have. My participation is a direct component that allows healers to heal. But, restricting my fate to data is leaving out the most vital variable: ME. And I believe that to be true for anyone born with a pre-existing condition. I am more dynamic than our current system is making space for. 

I am not just statistics and numbers. I have the right to turn down medications that don’t agree with my body without being reprimanded. I have the right to have access to new cutting edge medications without following blanket protocols. Every symptom I experience is important. My appointments shouldn’t deplete me emotionally and mentally for days. I don’t want to be so focused on death that I miss out on my life.

For me, the hardest work I had to do was to overcome the abusive relationship I developed with my diagnosis. I spent years feeling shame. Shame for not being sick enough. Shame for complaining when I was sick because it wasn’t as bad as some patients experience. Shame for not prescribing to medical experts prescriptions. Shame for speaking up. For questioning. For asserting which medications I was comfortable with and which felt like the doctor was throwing at me when I didn’t need it, or it wasn’t helping. Shame for being difficult. 

And then I felt emboldened. Emboldened that I know what I’m made of and that no one can ever take that away from me. Emboldened knowing that while I do experience symptoms from CF, I have found alternatives that have negated my need to take certain medications, and that even the doctor’s conceded that I was right all along. Emboldened that my superpower has shown me how much of life is about perspective, and grateful to have found mine. 

Sending so much love to all diagnosed and to those who love those with diagnosis. It is not an easy path, but it can be a bright one. 

2020-08-17T16:22:07-04:00August 20th, 2020|CF in the News, Featured|

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