Through the Patient Lens: Trisha’s story of living with gastroparesis and how an advocacy group has connected her to others, giving her inspiration and hope. Trisha’s working hard to raise awareness for everyone living with this terrible disease.
You can find Trisha on @bundytr5
My name is Trisha and I am sharing my personal story to give you an inside look at what it’s like living with this awful and misunderstood disease: Gastroparesis.
In early February 2013, I became sick with what we thought was a common stomach bug. I was unable to eat or receive an adequate amount of fluids orally. Due to the severe abdominal pain, nausea, vomiting, dehydration, and fatigue, I progressively got weaker. I spent months seeing various doctors and specialists.
On the morning of April 22, my husband was fed up and took me to the nearest university hospital. After seeing that I couldn’t even keep a cracker down, they admitted me for testing and diagnosed me with Gastroparesis. I went home the following week on a liquids-only diet. Unfortunately, I was unable to drink an adequate amount of fluids, became dehydrated, and began having trouble with side effects from one of my medicines. Once again, I had to return to the hospital as an inpatient. It was obvious that I had to receive nutrition; and it was clear that I would not be getting it orally.
In May 2013, I had to resort to having a GJ feeding tube placed. The feeds run for hours directly into the small intestine. Over the past 2 years, not much has changed. I still depend on my feeding tube for nutrition today. I have tried a variety of medicines to manage my continuous symptoms of nausea, abdominal pain, fatigue, dehydration, lightheaded/dizziness, and vitamin deficiencies without much success. The past 6 months have been very difficult for me physically and emotionally since I have had trouble tolerating my feeds and the non-stop symptoms. I feel as if I am in a race for my life.
Fighting an invisible illness like Gastroparesis (GP) is exhausting. Every day is a new day, some better than others. I am blessed and lucky to have a pretty good support team consisting of God, family, and GP friends. My support team is always there for me when I need a quick pick-me-up. They are always trying to keep me in the race when I no longer feel as if I can keep up. I have come to depend on them and expect them to be there for me no matter how small or big of an emotional adjustment is needed.
This past January (2015) I hit an extremely low point in my personal life. I was falling laps behind my counterparts and quickly falling farther and farther behind, drowning in my own sorrows. I was feeling defeated both physically and mentally. I wanted to be able to return to “life” again. I had expected to be strong enough and able to return to teaching, my passion.
Fortunately something unexpected happened. I was invited to join an advocacy group. Really? How could this actually help me? How could I possibly help others when I couldn’t even help myself? Following my heart, and ignoring my doubts, I joined this new group, which we named Gastroparesis: Fighting for Change. We immediately had a vision before us; we were going to teach the public about Gastroparesis.
Thanks to the advocacy group and my new friends, I was ready to face the Gastroparesis race once again. I was tired of sitting on the sidelines. Slowly, but surely, I began to heal emotionally. Becky introduced me to her amazing support group and Melissa gave me the confidence I needed to face my fears and bring awareness to Gastroparesis. Even though physically I am pretty beat-up and my body feels like it’s literally falling to pieces, my spirit has been lifted and is running once again. I am laps behind ordinary people, yes, but I am still in the race, and that’s what matters. That’s what kept me going and continues to keep me going today.
Sharing my personal story has opened my eyes and has allowed me to see myself in a different light. It has ignited a spark that’s empowering. I recently took a moment to step back to reflect on how writing and sharing stories could be helpful, and I realized in that moment that a simple task, like sharing our stories, helps others suffering with Gastroparesis by letting them know that they are not alone. Being an advocate has led me to realize that we are not alone and we are not going to receive better treatment options until we unite and demand to be taken seriously. Gastroparesis is not a stomach ache that comes and goes, but until awareness is brought forth, until the ugly truth about Gastroparesis is told, until people and doctors can comprehend the day-in and day-out struggles of living with Gastroparesis, we will continue to be overlooked and have very limited, ineffective treatment options. We have to stay strong and continue to race with all of our imperfections, scars, and damaged bodies or we will be left out on our own and forgotten.
Gastroparesis Fighting for Change Advocacy Group (public) https://www.facebook.com/Gastroparesis.FightingForChange.Page
Gastroparesis: Day by Day Community Support Page (public) https://www.facebook.com/pages/Gastroparesis-Day-by-Day/455297387941304
Gastroparesis Scoop (newsletter of information, articles, videos, etc all related to Gastroparesis. Information is updated often and can be followed) http://www.scoop.it/t/gastroparesis-by-trisha-high-bundy
Follow me on Twitter @bundytr5
Thank you, Trisha, for sharing your story of living with an invisible chronic condition!
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For more installments in our #PatientLens series click here.