Learning to Live with Gastroparesis: Alexa's Story - Care+Wear

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Learning to Live with Gastroparesis: Alexa's Story

  • 3 min read


Meet Alexa, a chronic illness warrior, advocate, mother, and friend. Continue reading to delve into Alexa's powerful story with Gastroparesis, and how her journey inspires survival, advocacy, and the beauty of living life uniquely.

Overcoming Gastroparesis Challenges:

Receiving a diagnosis of a chronic illness is an unexpected and challenging experience that no one anticipates or can fully prepare for. I personally encountered numerous difficulties after receiving my initial diagnosis. Prior to being diagnosed, I had managed my condition through dietary adjustments. However, my health deteriorated to the point of severe malnourishment. The transition from living without a diagnosis to suddenly being diagnosed was swift, and I found myself rapidly undergoing a procedure to have a GJ tube (feeding tube) inserted.

The speed at which I had to adapt left little time for processing. Balancing this new lifestyle, which now included a feeding tube, alongside my responsibilities as a parent to three children was incredibly challenging. I grappled with understanding the limitations and possibilities with this medical device, especially when it came to travel and explaining it to my children.

But I managed to conquer these hurdles by adopting a "one moment at a time" approach rather than being overwhelmed by the entire day. This mindset shift made a significant difference. I came to realize that despite the adjustments, there were far worse scenarios I could face. The feeding tube didn't define my life; instead, it played a crucial role in saving it. This perspective helped me find strength and resilience in the face of adversity.

Finding Joy Despite Chronic Illness Obstacles:

Despite grappling with the challenges posed by Gastroparesis (GP), I find profound moments of joy in the simple fact that I'm alive. I consider myself fortunate to have the opportunity to continue raising my children, and for that, I'm deeply thankful. Advocating for others to finally receive the diagnoses they need also brings me great joy, as I understand the importance of timely diagnosis in managing chronic illnesses.

However, my most significant source of joy was when I educated my children about my feeding tube – explaining its purpose, how it functions, and why it's crucial for my health. Witnessing them absorb this information and articulately share it back to me was incredibly rewarding. This knowledge empowers them to understand and support individuals they encounter who also have tubes, eliminating any sense of curiosity or judgment. They recognize that these tubes are lifelines, enabling survival, and there's absolutely nothing wrong with relying on them. These moments with my children fill my heart with a unique kind of joy and reassurance that they're growing up to be compassionate and empathetic individuals.

Advice for Gastroparesis Warriors:

I know you’re scared. I know you’re overwhelmed of the unknown. I know that you think this is going to ruin your life. It’s actually the opposite. This diagnosis is going to save your life. If you need a medical device(PICC/TUBE) to help you, don’t be ashamed. Don’t be embarrassed. Be a survivor.

It's essential to continue showing, talking, and normalizing life with Gastroparesis (GP). By taking it one moment at a time, we break down the overwhelming days into manageable pieces. When the challenges seem insurmountable, I recall the wise words of my dad: "Be grateful you're looking down at the grass and not up at the dirt." This reminder keeps things in perspective, highlighting the gratitude we should feel for being alive and able to face these challenges.

While our lives have been altered by GP, it's crucial to recognize that it's not the end. Instead, it's a different way of living, a new chapter that brings unique experiences. By embracing this mindset, we navigate life with resilience and adaptability, finding joy and fulfillment in the moments, even amidst the difficulties. Through our openness, we contribute to the normalization of life with GP, fostering understanding and compassion in our community.

We're not merely surviving; we're living life in our own remarkable way.

Follow Alexa to learn more about her journey with Gastroparesis.

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