“As COVID continued to spread, states began preparing for their shutdowns, and I continued to deteriorate. I couldn’t walk without assistance, had lost about 40 pounds, and could barely keep anything down, even water. The fear of getting sick grew, I knew if I got sick my frail body would not be able to fight.”
August was Gastroparesis awareness month — and throughout the entire month of August, Alana Schreiber of Kirkland, Washington was working to create daily content on her social media to educate people about living with this condition, in efforts to encourage people to better understand her disease and inspire the acceleration of research toward finding a cure (check it all out, here!).
Alana lives in the epicenter of the pandemic’s origins in the US, in Kirkland, and was in the hospital facing her diagnosis right as the first U.S. COVID-19 patients were being actively treated in the same location back in February. She was terrified she’d catch COVID while she was an inpatient getting her feeding tube placed (nicknamed “Tupert Grint) and fighting this debilitating autoimmune condition. The shelter in place orders forced her to remain even more isolated as it wasn’t safe for her to travel or be in close proximity of others.
Throughout quarantine Alana faced her unexpected challenges with grace. She’s now working toward advocating for improved ways to help those with disabilities and chronic illnesses get the resources they need — such as an ability to indefinitely work from home — because she’s realized just how quickly life can change.
Read more about Alana’s COVID Chronicle below as she personally explains her time battling this chronic illness both before and amidst this pandemic, as she continues to learn how to navigate the unique challenges that come with fighting Gastroparesis that she will face for the rest of her life.
What’s the biggest challenge you’ve faced during quarantine/the COVID crisis?
“I was, and still am, worried about the impacts that COVID-19 could have on my health. For several months, I had been dealing with unknown health issues-losing weight rapidly, having no desire to eat, pain, throwing up, dizziness and weakness. It was like I had the stomach flu that never seemed to go away. This went on for about 4 months until I finally got an answer.
The first case of COVID in the US was in my state in January, right around the time I was diagnosed with gastroparesis. About two weeks later the massive COVID-19 outbreak occurred at the Kirkland Lifecare Center, which is just under a mile from my house.
I had a lot of fear about this unknown virus, and it seemed like the country, the state, and news stations were playing down the severity of it. Even people around me didn’t seem too concerned about it.
I however was extremely concerned, I had just been diagnosed with a rare disease and knew my body was weak and susceptible. Gastroparesis, or delayed gastric emptying, is a chronic condition that affects the movement (or motility) of the muscles in your stomach. For a normal person, forceful muscular contractions push food through your digestive tract. However, with gastroparesis, your stomach’s motility is slowed down or doesn’t work at all, this results in food staying in your stomach long after it should have been digested.
The gold standard to diagnosing gastroparesis is a Gastric Emptying Study, or GES. In this study a patient eats a radioactive breakfast, and then has images taken of their stomach for four hours. If you have more than 10% of food left in your stomach after the test, you have a gastroparesis diagnosis. There is no cure for gastroparesis and medications are limited.
Gastroparesis can develop as a result of diabetes, abdominal surgery, autoimmune disorders, endocrine disorders, eating disorders, medication reactions, or idiopathic, which means no known cause. I fall under idiopathic for now. At this time I am still undergoing tests to determine if there is a reason I developed gastroparesis. Getting proper care and answers has been one of the many challenges I have faced during quarantine and perhaps the most frustrating.
After the outbreak at the nursing home, my doctors offices began limiting their contact with patients, and testing. This became extremely frustrating for me because I had finally gotten an answer with WHAT I had, now I wanted to know WHY. Nor could my doctors keep tabs on my progression. My condition has worsened, which landed me in the ER twice in one week.
My wonderful gastroenterologist, who diagnosed me with gastroparesis, knew I couldn’t risk the ER exposure so he ordered me recurring IV infusions. This became my lifeline three times a week for a month, and it was the only time I would leave my house. The time I spent with my nurses was well appreciated and valued, it was definitely nice to have some human interaction.
As COVID continued to spread, states began preparing for their shutdowns, and I continued to deteriorate. I couldn’t walk without assistance, had lost about 40 pounds, and could barely keep anything down, even water. The fear of getting sick grew, I knew if I got sick my frail body would not be able to fight.
“Because of COVID, all elective procedures were postponed so I could not get my permanent feeding tube, or GJ tube. By the time my state finally gave the OK for procedures, I had had 2 sinus infections, and 3 nasojejunal tube changes, I was so ready for relief!”
A few days before our statewide lockdown occurred, I was admitted to the hospital for malnutrition, dehydration, and to have an NJ, nasojejunal feeding tube placed. I stayed for a few days and was terrified I would catch COVID. After my hospitalization I was sent home and held my breath for two weeks hoping I had not contracted COVID. The state was on complete lockdown and the only access I had to my doctor was through telemedicine.
It was a bit daunting adjusting to tube feeds without my doctor and self monitoring my condition at the same time. I had my NJ tube for three months, typically the maximum time a person might have one is for a month, as it can cause major issues to your sinuses. And most times people just have them for short hospital stays. But because of COVID, all elective procedures were postponed so I could not get my permanent feeding tube, or GJ tube. By the time my state finally gave the OK for procedures, I had had 2 sinus infections, and 3 NJ Tube changes, I was so ready for relief! If COVID was not around I’m sure my care would have been much faster and accessible.
Another way COVID impacted me has been not having the family support during this time. My GJ surgery was the first major surgery I had gotten, and I was terrified that I couldn’t have my mom with me afterwards. It’s weird to think you could be in any bad situation and your parents would be with you in a heartbeat, but because of this unknown virus it halts all of that. However, I am lucky enough to have my boyfriend Dominic, who has taken wonderful care of me.
I still don’t have all the answers to exactly why I have gastroparesis, but I finally was able to see a specialist and get some further testing to diagnose me with a comorbid condition called Postural orthostatic tachycardia syndrome, or POTs. Per John Hopkins Medicine, ‘POTS is a form of dysautonomia — a disorder of the autonomic nervous system. This branch of the nervous system regulates functions we don’t consciously control, such as heart rate, blood pressure, sweating and body temperature.’
I basically have learned that while POTs didn’t cause my gastroparesis it does exacerbate it and visa versa. While I am glad there were COVID restrictions for doctors visits, I am a bit frustrated that I could have figured this out earlier and could have had proper intervention sooner. I am now having to learn about a whole new diagnosis and how to treat it and manage it.”
Is there anything you feel that you’ve learned through this experience, you can share as inspiration to those who are feeling a bit defeated by everything?
“The best advice I can share for someone right now who is feeling defeated by everything is to be patient and kind to yourself. I know it sounds cliche but it’s been the BEST thing I have learned during COVID and with being diagnosed with chronic illnesses. I have always been a planner, or a bit anxious of the unknowns. COVID and having life altering chronic illnesses are FULL of unknowns.
During this time I have learned to just face the unknown, be patient, and know that everything will pass and things will change. For example, if you asked me 3 months ago if I could walk to the park or drive to the grocery store, I would have said “NO WAY!” But now I am able to go on short walks and even went on a road trip last month! If I had a stuck mentality or worried about what would come next, I honestly don’t think I would be where I am today!”
“Seeing the work from home policies implemented in response to COVID makes me hope that people with disabilities and chronic illnesses will have better access to work remotely when things go back to normal.”
Has this experience in any way changed the way that you order your personal priorities in life?
“This doesn’t have to do with COVID really, but getting sick has made me take a big step back from my life that I never expected possible at the age of 24. I went on medical leave twice and ultimately had to leave my job for my health.
Before, I was definitely a ‘work work work’ mentality, I worked in high school, all through college, and graduated college in three years. Taking a step back, and realizing I have to slow down for my health is really hard! I am now trying to figure out what my next step in life is while still keeping my health in mind.
I will say, seeing the work from home policies implemented in response to COVID makes me hope that people with disabilities and chronic illnesses will have better access to work remotely when things go back to normal. As mentioned earlier I would also love to figure out a way to help those with disabilities and chronic illnesses. I have realized how isolating and life altering it truly can be and want to help others struggling.
I have realized this even more, as I have started a new relationship with my therapist — who actually has my condition! Talking to her has made me realize there are possibilities in life even when each day is so unknown. She inspires me and I hope to follow her by helping others. But right now I am still focusing on myself, other people are next 🙂
What has your local community been doing to fight the rate of transmission?
“We currently have a statewide mask mandate in place and counties are in different phases of re-opening.”
What has been your general daily routine so far during the pandemic?
“Every day since March, I FaceTime my sister, Zoe in the morning. We typically end up FaceTiming for hours — to the point my battery dies! It’s really nice, we have always been close but I feel like we have especially connected during the pandemic.
She has epilepsy, so she also has to be cautious about COVID, so we both really understand being stuck in the house. I started a garden shortly after my NJ was placed and my sister and I typically garden together on FaceTime. She started her garden around the same time as well! Other than that, I don’t have much of a routine, I may take a nap, or color, and lately have had appointments.”
“[My] garden deck is extra special to me because I started it basically right after I had my sickest and lowest point, and was finally [starting to] get the proper hydration and nutrition my body needed. Its like as the garden grew lush and green, I grew stronger.”
What have you been doing to keep your spirits up on a day-to-day basis?
“This ties in with the above question well. FaceTiming my sister has been an incredible way to keep my spirits up, its a way to continue to have social interactions, even if its not physical. Right after my NJ tube was placed, the state shut down, so I decided to start a garden like many others!
This garden deck is extra special to me, because I started it basically right after I had my sickest and lowest point and was finally getting the proper hydration and nutrition my body needed. Its like as the garden grew lush and green, I grew stronger. Having chronic illnesses definitely has taken a huge toll on my body’s strength and of course is mentally taxing.
My garden has become a place for me to test my capabilities and strength, like physical therapy and meditation wrapped into one. I spend a lot of time in my garden and have also done a few DIY projects for the garden. My deck has become my peaceful oasis and really keeps my spirits up! I currently have over 30 planters, with an assortment of veggies, flowers, and herbs. Watching my beans and peppers grow bit by bit everyday is one of my favorite moments of quarantine, it’s taught me to enjoy the little things in life.”
Has this travel ban/quarantine situation impacted any especially important future plans you had laid out?
“As mentioned earlier, COVID prohibited my mom from traveling by plane to take care of me post surgery. Additionally, I was unable to travel to see my dying grandmother, and ultimately her memorial service was done over Zoom.
Day-to-day I have to be really careful with going out, and when I do, I try to take precautions. For a few months I rarely left the house — only for appointments and infusions. My boyfriend or his mom did the grocery shopping to risk exposure. Now that I have gained some strength, I feel a bit more confident with being out.
I am still super careful and only going for the necessities. Mostly the pharmacy and grocery store. When I go to the store I have my feeding bag on me that has hand sanitizer. I use that like CRAZY in the store and of course wear a mask. I also wipe my groceries or purchases down with a sanitizing wipe and wash my hands again. I think even when COVID restrictions are lifted I will continue to keep these practices.
Other than the day-to-day, my boyfriend and I were supposed to go to a few weddings this year that were canceled. I feel really bad for all the couples this year that had to postpone or turn their wedding into a Zoom. Because of COVID, we are not flying anywhere, but have taken a road trip to see my family in California. My boyfriend and I will most likely do that once more.
I am trying to look at this as a positive because I am spending quality time traveling with my boyfriend, seeing my family longer and more frequently than I have before, and I am able to bring my cats along! I do have to stay with my sister instead of my mother, as she is being really strict about COVID. I am definitely worried about what the holidays look like as it’s hard to drive to CA in the winter from Washington. This could very well be the first holiday season that I do not go home.”
Any other thoughts that you’d like to share?
“I would like to add that as COVID calms down, and the world returns to normal, think about those with chronic illnesses, invisible illnesses, or disabilities who might still have to continue to live an isolated life.
I was pretty much stuck at home because of my health for about 3 months before COVID shutdowns, so I am well into this quarantine. We also have seen so many companies have the capabilities to telecommute so I hope this continues and gives more opportunities for those with chronic illnesses to work from home, this would be a game changer and give much needed, and well overdue access to those with disabilities.
There is poor medical research and understanding with this disease. There are only a few medications, some that aren’t even FDA approved, few surgical options, and no cure. If gastroparesis was talked about more there could possibly be more research funded for it to either find a cure or have doctors gain a better understanding of the disease.”
Read more about Alana’s journey educating everyone Gastroparesis and the opportunities she’s fighting to create for those with chronic illnesses, on her social media, Facebook @Alana Schreiber and Instagram, @alanababana.
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