Celebrating Small Victories and Embracing all the Emotions While Fighting Constant Obstacles
Diseases
Endocrine Disease
Issues and Challenges
Coral has encountered: Mental Health Access, Caregiving, Disability, Gaslighting, Invisible Illness
My Story
@patientsrising
Hi, my name is Shelsea and this is my 7yr old daughter (1 of 2 girls), Coral. She was diagnosed with autoimmune type 1 diabetes on 3/11/16 back home in Honolulu, HI. Three days prior, I noticed she was wetting through her diapers overnight, drinking plenty of water and very lethargic. I contacted her pediatrician at Kapiolani Medical Center that Friday, she urged us to meet her in office immediately. She examined Coral right away even though her appointments were full that day and said, “Coral has diabetes and she’s severely dehydrated.” The ER nurses met us, tested her blood glucose and it just read “HIGH” on their meter. They told us she was in diabetes ketoacidosis (DKA), needed fluids and insulin right away or she’d slip into a diabetic coma. “One day later [we] could’ve lost her.” DKA can happen at anytime an insulin dependent diabetic can’t make enough working insulin to break down glucose in the bloodstream causing acidic ketones to build up within days, affecting all vital organs.
The first 24hrs in the PICU was hell. We met her first endocrinologist - the only pediatric Endo in all of HI, and he educated us as directly as we asked. We took turns heading back to our 900 sq ft apartment in Kalihi to grab more things to last us the next three days in the hospital. She had IVs in both arms - one for hydrating fluids and the other for each time the nurses needed to give her insulin or do another blood draw. By the second day, I was learning how to give her injections w a syringe and a pen needle. I postponed my small business and became her primary caregiver from that day forward.
We planned our 2nd child four years later because managing T1d is never-ending. It’s also very difficult and costly to find a competent trustworthy babysitter for a young child w a chronic illness.
Important: T1d is caused by an autoimmune attack on the insulin producing beta cells of the pancreas. It is nobody’s fault tho the cause seems to lead towards genetics, environmental, or an illness that triggers it. Nobody on either side of our families have T1d. After over six years living w this chronic life-threatening disease, it sure finds its way to beat us when we’re already kind of broken and then rub it in our faces. Then there’s some mornings we wake up and her BGs are in-range thanks to my fine-tuned basal (constant drip of fast-acting insulin ONLY when pumping) settings on her Omnipod pumps PDM (personal diabetes manager / remote), and we celebrate the heck outta those small victories. We’re very realistic about our goals in managing T1d and embrace all the emotions while fighting through constant obstacles w insurance and keeping her safe in school. We haven’t accepted this disease, but we have accepted this #t1dlife. We constantly help coach her in every way and tell her she’s beautiful, smart, and strong. She amazes and challenges us every day.
Aloha,
Shelsea & Coral
My Motivation and Inspiration
I have a design background and AAS in Fashion Design, BAS in Fashion Marketing & Mgt. Coral has always inspired me to be better than my own parents and redirected my swimwear passion to T1d awareness, education, and advocating for affordable insulin and access to healthcare. We’re also fighting hard to keep her safe in school with T1d and our special needs attorney is contact w her school districts attorney.
Share This Story
Get the most from every Story
Find A Compelling Patient Story
Share it on social media.
Share Your Story On Our Network
Share your insights, challenges and what keeps you going.