How it all Started
Melissa knew T1D was in her family. Her father has it, and her uncle passed away due to complications related to it. Melissa didn’t put two and two together until she decided to see her childhood doctor, thirsty even after drinking over a gallon of water a day, losing 15 pounds in 2 weeks yet still eating over 4,000 calories a day, pain in her abdomen, and blurred vision. She didn’t have health insurance at the time, but the doctor realized something was wrong and agreed to see her at a reduced rate and run tests. The same day, at 5pm she received a call, her blood sugar was at 967. The doctor told her to come in to start taking insulin. Luckily, she did not have to go to the hospital like most people who are diagnosed with T1D.
Prior to her T1D diagnosis in 2014, Melissa led a healthy life. She worked as a Research Coordinator, Yoga Instructor, and was part of a program that took paraplegics surfing among other things. When her diagnosis came, Melissa had no choice but to put her health first. She quickly realized what meant most to her; one of the biggest gifts of this disease. She now is raising a healthy 6 year old boy and works as an organic Farm Manager for a Community Supported Agriculture program, providing food weekly for 75 families, teaches Yoga and other fitness classes. Life with T1D is much more challenging than before T1D. It requires rigorous management at every meal and in between and failure to stay in range with blood sugar levels is guaranteed just about every day. “My body feels like it’s constantly in recovery mode.”
At age 27, and about a year after her diagnosis, she became pregnant. Though doctors suggested holding off on pregnancy, Melissa went ahead and had her son. He was born at 36 weeks by emergency c-section at 11 pounds, 8 ounces.
I have some PTSD from having to save my dad so much as a kid
Melissa grew up helping her mom take care of her dad when he had low sugar, assisted in giving reminders for when he needed to eat, and occasionally administered medication. As a child, she was present for many close calls where she and her mother gave him emergency glucagon shots for deadly low blood sugar levels and times when paramedics came to the house to help. Melissa’s dad was diagnosed in his early 20s, and so was his late brother. “It hit me hard when I was diagnosed. I left my family and just went off on my own and lived in the woods for months”.
Melissa considered herself free spirited, she lived a life where she didn’t like or need to follow strict regimes or routines, but her diagnosis made her feel shackled. Melissa mentions “earlier I was taking a different approach, I thought I wasn’t going to let it affect me negatively. I tried eating what I wanted and when I wanted, but I knew if I keep that up I might not be here much longer”.
I had to choose being in poverty, over having money security
Working multiple jobs prior to her diagnosis, Melissa didn’t have any insurance plan or healthcare coverage that would be able to cover the costs associated with T1D. Initially, Melissa was lucky to receive grants from the Cleveland Clinic to help for the first few doctor visits.
Melissa was getting bits of insulin from her endocrinologist, and then later had to use her savings to cover 3 months of insulin costs. It took a long time to figure out how to cover the costs, and even her dad was sharing some of his leftover insulin.
To get an affordable healthcare plan that would have helped Melissa cover her expenses, she would have needed to work a full-time job. However, with her health deteriorating and caring for a young child, she chose government housing and an impossibly tight budget in order to receive Medicaid which would cover what she needed for T1D. “In my previous housing, I was in a bad neighborhood, I was in the middle of a shooting with my two year old son”.
This wasn’t the life Melissa wanted to live, “I used to have a comfortable amount of money, I have a college education, it's just not fair”. Melissa mentions the last thing she wanted to do was rely on government aid, but she felt like her condition left her with that as the best choice while her son was young. She was fortunate enough that strangers donated sensors and transmitters for a life saving DexCom device, “No one, especially a single mom who is breast-feeding her son should have to worry about dying in their sleep because they can’t afford a life saving device that could be available to all T1D’s”.
Melissa’s view on genetics
Melissa is half white and half Puerto Rican. Type 2 diabetes had been in her family history, but type 1 diabetes first started with her dad and his late brother. Melissa is the youngest of 5 brothers and sisters, she is the only sibling with Type 1 diabetes. Her niece was recently diagnosed at age 18. She also mentions she had the healthiest lifestyle among her siblings.
When asked about genetic testing to help couples understand how their genetic risk may impact their future child's health, Melissa mentions that it could be a helpful tool for couples. “It might offer comfort for people” and that they can utilize that information for their child's future.
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