Her Story: Destini Russell

Destini Russell Talks Taking Back Control of Your Health

Sarcoidosis is a sneaky illness. It is an autoimmune disease in which cells become inflamed. It presents itself in varying forms, sometimes so subtly that you mistake the symptoms for common health issues. Sometimes, there are no symptoms at all. It shape-shifts. It is not limited to one location of the body, and the attacks can range from mild to fatal.

At this time, it is incurable. This is a grim portrait of a disease that materialized seemingly out of nowhere in my world.

If I were to describe my life in the days before my diagnosis, the words that come to mind are carefree and believed invincibility. I had finally found my footing in my 20s. After stumbling into adulthood and having overcome adversity already, I was finally living independently and comfortably. I had a career that I was passionate about that provided housing for my young son and I. I had an amazing family that supported me and a circle of friends who accompanied me in all of my youthful antics.

In those days I worked hard. I then rewarded myself like any other young person, by partying just as hard. I ate whatever and slept when I could. I handled my responsibilities at times running on empty and prided myself on the ability to do so. It’s lucky misfortune that I believed this was a sustainable lifestyle because this is what led to my first flare-ups.

Suddenly, I began to experience chronic fatigue and light sensitivity. I woke up one morning, squinting and exhausted. Had I worked too hard during the week or not gotten enough sleep? 

destini russell
destini russell

When I noticed my vision didn’t clear up after hours of being awake, and I was still more tired than ever, alarm bells began to ring. However, I didn’t raise the red flag until my joints began to ache relentlessly and my hands swelled like blistering water balloons.

This began a six-year journey in the search for a diagnosis. One moment, I would be incapable of work or leisure, doubled over in pain, and breaking out in peculiar rashes. I had to have emergency surgery on my thumb and a seizure event sent me to the ER. But in the days and weeks following, I would be the picture of health. This was confusing for doctors and for myself. 

I started at primary care and was ultimately referred to a host of specialists all over the state – ophthalmologists, neurologists, dermatologists … The list was never ending. The search for answers became as exhausting as my symptoms. Thankfully, there was light at the end of the tunnel.

At yet another doctor’s appointment, an examination of my eyes indicated sarcoidosis. My six-year journey appeared as if it were finally coming to a close. When I received my official diagnosis, professionals advised me of a fearful, powerless fight ahead. There is no cure and no resolve outside of Western pharmaceuticals. It all sounded so grim. At first, I took a multitude of medications that overwhelmed me with disagreeable side effects, but I knew this was not the path that I was intended to remain on.

I began to do thorough independent and citable research. I gained a lot of knowledge about my triggers, the nature of the illness, and holistic treatments. I devoured any articles, books, and online resources that I could dig up to approach this in a health-conscious manner. The process of my health evolution was set into motion. I began by truly studying my body and monitoring my flares. I noticed that some foods caused a reaction. I realized that sleepless nights or high stress situations affected me. A night of partying or nervous tension could result in an unpredictable episode. The more awareness I gained, the easier it was for me to apply holistic knowledge.

One of my most visible symptoms was my skin. During flares, I would develop swelling or raised skin and irritating rashes.

destini russell
destini russell

I noticed that it slightly mirrored eczema, a skin condition my son was battling. When the physicians suggested steroids, I immediately knew I didn’t want to expose him to the same medication that caused me such drastic side effects. This prompted me to learn more about the body’s response to natural ingredients and herbs rather than the store-bought products full of chemicals and dyes.

I began to experiment with soap making. With determination and persistence, I was able to successfully create several products that calmed and hydrated our skin, all but eradicating the symptoms we were experiencing. This was the birth of my soap and skincare line DesJanay From Earth To Skin.

From there, I was able to totally restructure my life. I eliminated behaviors that were contributory to the illness. I ate cleaner and increased my water intake. I paired what I was learning with exercise and prayer.

I was able to cease certain medications and reduce others. My skin flares are easily controlled, and my other symptoms occur few and far between. Sarcoidosis is a relatively rare disease. It’s easy to feel as if you are sojourning alone. I began to share my experiences online and quickly discovered there was a community of people nationwide with the same story.

I continue to use my platform to connect with and advocate for those who are fighting daily for quality of life with this illness. I document authentically to provide a true testimony for survivors in hopes they gain inspiration, knowledge, and direction. Sarcoidosis is a part of my story, but it does not define me. It has been a 10-year journey of self-exploration.

I am most proud that I did not take a backseat and allow the fear, ignorance, and trepidation to drown me. I advise anyone going through a similar life-altering transition to have a growth mindset. Once you believe that you are capable of good health, you will outgrow the limiting beliefs that held you captive in your condition. Once you change your mind, everything else will follow. Be your own advocate. Research, present your questions to your healthcare providers, and know that you know your body better than anyone else. Pursue your health like your life depends on it, because it does.

Destini Russell, Chattanooga

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