Emma Alvarez-Roth is an artist with a degree in stage and production management. Her chronic illness journey began in January of 2020, and she wanted to share her story.
Emma sits on her windowsill with the city in the background, wearing a black tank top and blue jeans. Her Hickman line is showing and her TPN backpack is leaning on her knee.
I was born with multiple chronic illnesses but never knew I had them until they all came to a head in January of 2020, and I began my journey in finding each of their diagnoses.
As of August 19th, 2021 I was placed on TPN (total parenteral nutrition) and have been on it since. I wanted to share my story and day to day life as a chronically ill adult living on my own in a big city!
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Scroll down to see FAQ’s about Emma!
Medical FAQs About Emma!
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I have been diagnosed with more than 10 chronic illnesses but the main 3 that affect me the most day to day are:
• Dysautonomia (of sympathetic and parasympathetic nervous systems)
• Gastroparesis (and greater gastrointestinal dysmotility)
• Connective Tissue Disease (so far, not clear which one; suspected Ehlers Danlos)
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As of June 24th, 2021, my body began being unable to tolerate food.
This meant that for me, anytime I ate very small amounts of food, it would trigger very drastic symptoms. Because I didn’t know this until much later, I continued eating and my symptoms escalated to a point where it almost killed me. I was then put on a “failure to thrive” which means malnutrition.
• If I do eat small amounts of food or drinks it can cause me to be immobilized in bed in severe pain and nausea for as little as 1 week up to 7 1/2 months (as of my most recent longest flare).
• Therefore, I do not eat or drink (NPO) and have TPN to provide me nutrition through my central line to avoid my GI system and cause more problems.
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In short terms- nothing.
I stopped eating meals in August 2021 and stopped eating any kind of food (candies, gum, etc.) in November 2022.
• I have done multiple experiments with my doctors to try eating but it always results in very large flares that last months.
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TPN, especially long term TPN, can cause liver issues over time.
• Since my TPN has to run for 24 hours, my liver is constantly filtering through the medicine in my bloodstream.
• My liver enzymes started getting really dangerously high. To combat this (occurred 2021-2022), my doctors had me infuse 3 TPN bags that don’t have lipids in them. Lipids are what makes the bags white in color so without them it looks clear. I infused 4 lipid bags and 3 non-lipid bags a week and alternate between them so some days my tubes look clear.
Additional Site Information:
• These posts are only reflecting my experience and therefore not the overall experiences of others who have had certain medical procedures, conditions, and/or medical devices.
• Content Warning: Blog posts cover weight, eating habits, and medical experiences which may be triggering for some readers.
• Accessible captions are available on blog post images by clicking on the white dot (for mobile devices) or clicking on the image and scrolling the mouse over the image (on laptops and computers).
• Site content is available in Spanish for readers who do not speak English or would prefer to read it in Spanish however, some jokes may not read correctly due to them being American cultural references.
*All medical teams and hospital names have been excluded from all stories for privacy reasons. *