‘My biology teacher said, ‘You’re lying. There’s no way you’d be alive without a pancreas.’ I held back tears, mortified. She accused me of my disease not being real.’: Diabetic woman details journey, ‘Our stories need to be heard’

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“When I was born, I had a rare condition called Nesidioblastosis, which means my pancreas was over-producing insulin. This caused me severe hypoglycemia. No matter how much I ate, my blood sugars would not stay up. This was something which needed to be fixed right away. It was extremely dangerous for my body to be in a constant low blood sugar state. It could do some real damage to my body, especially as an infant.

The doctors went on to take out half of my pancreas at first. They wanted to see if this would regulate my blood sugars. This failed tremendously, and my blood sugars took vengeance. My sugars started to go even lower than before and I was still running at a dangerously low rate. The doctors then decided to do a beta cell transplant to see if it would help with regulation, but this failed after a couple days. The only option was to remove the entire pancreas and the outcome was becoming diabetic. I not only have to administer myself insulin, but I also have to take digestive enzymes for when I eat.

Courtesy of Maya Ramirez

Having diabetes my entire life has been quite the journey. I was taught how to be extremely responsible at such an early age. My parents wanted me to live life as normal as possible. They did not want diabetes to define me and they wanted me to eventually be able to manage this disease on my own. Some of my earliest memories of life are at the age of three and four, learning how to test my own blood sugars. By the age of four I knew how to test my own blood sugar and I learned how to inject my own insulin shots.

All I craved growing up was to become independent with my diabetes management. I wanted to feel like I was not excluded from anything because I was diabetic. I got involved in sports at an early age, and this taught me how to advocate for my needs. I was able to learn to recognize my lows and communicate what I needed help with. I remember always having my mom present when I did any sort of field trips. I also wasn’t allowed to spend the night at friends’ houses and I wasn’t able to be out of my parents’ sight for long periods of time. I felt like I had so many restrictions because my parents had to make sure I was giving myself the correct insulin dosages.

Courtesy of Maya Ramirez

Going through school as Type 3C was definitely a learning experience. Every phase of my education was completely different. When I was in elementary there were a lot of protocols set up for me. I was on a 504 Plan and then I transitioned into an IEP (Individualized Education Program). These plans helped me have accommodations at school. It allowed me to have things like a school nurse on campus, my medications available to me, the ability to test my blood sugar in class, and if I had a low blood sugar prior to a test I could take it at a different time. It was so I was protected during school hours and so I was also able to succeed in the classroom setting. As I got older, there were less restrictions, and I had more independence given to me. I still had these plans set up in high school, but I had more freedom to handle my diabetes management.

One distinct memory I have from elementary school that made me feel like an outsider was when classmates would have birthday celebrations. My mom had requested my teachers let me know when a classmate would have a birthday party or if we would have class potlucks. She wanted to know these details because she wanted to make sure I would be able to participate in the food festivities. I wasn’t on a pump yet, so I really had to plan my injections ahead of time so I could eat the goodies. There was one particular incident in the 2nd grade which made me feel completely left out and caused me to start crying. We had a surprise potluck celebration in class and my teacher completely forgot to tell my mom. I had to sit around and watch everyone eat the goodies. At first I didn’t mind it, because I knew I could take them home. Then all my classmates kept bugging me on why I wasn’t eating. I told them I couldn’t, because I needed my insulin. We were seven years old at the time, and my classmates didn’t understand diabetes at all. They kept making comments like, ‘That’s lame,’ ‘That’s stupid you can’t eat this,’ or, ‘Sucks you’re diabetic.’ I started crying because I felt like an outsider and no one understood my medical condition.

I felt like my life completely changed when I received my insulin pump on my 10th birthday. I felt like I was granted all this new independence, because the pump allowed me so much freedom with my diabetes management. I was able to go to more places by myself, able to finally attend sleepovers, and go away to diabetes summer camp. I really did feel confident in myself and I could finally have control of my body. Everything changed for me, especially in school. I had so much more independence. I also was able to eat more freely, because I could just give my medication right then and there on my machine. This helped so much in middle school and high school. I had more confidence in myself to be able to one day fully be independent.

Courtesy of Maya Ramirez

During this time period I also started to attend sleep-away summer diabetes camp. I had some of the best memories of my life attending these camps. I attended camp from age 10-23. This was the very first time I was surrounded by other diabetics my age. The majority of my camp-attending years were at Camp McCumber. I went for 10 years and it was located in Northern California. I learned so much about how other diabetics felt dealing with their overall management. They often would say they didn’t have much friend support at home, they were scared of living on their own, and how expensive it was to buy their medical supplies.

A lot of my camp friends struggled with the financial aspects of being diabetic. The biggest complaint I heard was they wanted the newest technology, but even with insurance it was too expensive. I had so many camp friends eventually end up getting really sick from complications. They wouldn’t always have the funds for the medications they needed, insulin in particular. It made me really sad knowing there were people who were struggling to get their meds. Meeting all these diabetic friends throughout the years really motivated me to start advocating. I wanted to educate people and grow awareness of diabetes, especially people who are Type 3C. I have had so many people throughout the years discredit my condition. They didn’t think it was even serious or thought I was ‘lying’ about my pancreas being removed.

Courtesy of Maya Ramirez

I will never forget the time I was a sophomore in high school and my biology teacher tried to embarrass me in front of the class. We were learning about diabetes and we started talking about the pancreas’ functions. I let my teacher finish speaking and then I raised my hand politely. I let her know everything she was saying was correct, but I happened to have my pancreas removed, because it was overproducing insulin. My teacher was so quick to tell me I was wrong, there was no way I would be alive without one, and it couldn’t have happened to me. I was mortified an adult, especially a biology teacher, would say this in front of 30 other students. The room grew quiet as I sat there in shock. No one had ever talked to me this way and accused me of my disease not being real. All I could say was she was wrong and I know what was done to my body as I held back tears of embarrassment.

After this incident, I wanted to educate others on my Nesidioblastosis and being a Type 3C. I felt our stories should be heard and not a lot of people understood the pancreas has more than one function. This is what motivated me to start my diabetes Instagram page and in this process, I have been able to connect with several other Type 3Cs. I hope one day more people understand there are several different ways to get diagnosed as a diabetic, and one happens to be when the pancreas is removed. The only thing I did not feel confident about was how much I struggled with nutrition. As a Type 3C, I struggle with digestion. The pancreas does a lot more than just produce insulin; it also helps with digestion. I feel like I constantly have been battling with food. I have had a lot of doctors not fully understand my condition and make me feel like I wasn’t being heard.

Courtesy of Maya Ramirez

I was given CREON, which is a medication which helps with digestion. These enzymes and my insulin are my biggest life savers. I have been taking digestive enzymes since they removed my pancreas. I notice such a big difference with my body when I do not take the medication. I feel cramping, nausea, bloating, lethargy, and just sick overall. It almost feels comparable to food poisoning, depending on what I eat. I had a very rebellious phase where I did not want to take my CREON. I hated the fact I always had to carry it with me, as well as my diabetes supplies. I thought I could somehow change my diet to avoid having to take them. It worked for a bit, but unfortunately my body was getting so sick without them. I just felt like I had no energy and my stomach would look like I was four months pregnant. This is how bad the bloating would get.

I felt I was starting to lose control of my body. The physical pain I was enduring from the stomach pain started to affect my blood sugars. I felt like my body was constantly under stress. I used to enjoy eating, but then it became a chore I did not want to do. I decided to make a lifestyle change. I didn’t want my diabetes and my digestive issues to take over my life. I started to work out consistently, making sure I was staying hydrated, figuring out what foods triggered the pain, and making sure I always took my enzymes. The foods which triggered the worst reactions were salty, greasy, had high fat content, red meat, and dairy. Even when I  ate these foods with the enzymes, my body still would get food poisoning-like symptoms. In the process of figuring this all out, I noticed when I would eat foods with these ingredients my blood sugars would be out of control as well.

Courtesy of Maya Ramirez

I felt a huge amount of relief lifted off of my shoulders when I learned what foods worked best for my body. The food allergies did not become so apparent until I got older. I didn’t realize how bad my lack of digestion was affecting my sugars. This ongoing struggle of blood sugar and digestion issues caused me so much stress and anxiety. It really took a huge toll on my overall mental health. I felt like I had no one to talk to about this because it was hard to explain what I was feeling. My body was not absorbing properly and it took me years to figure this out.

What I have also learned living without a pancreas has been how sensitive my body reacts to insulin. I have never been in DKA (diabetes ketoacidosis), which unfortunately happens when your blood sugar goes extremely high. I still do get high blood sugars, of course, but I feel like I have more low blood sugars. I have had to teach my close friends and family what to do in case of low blood sugar emergencies. Teaching them what to do has definitely saved me in the past. I can still thankfully feel my lows, but I am taking precautions to help better my blood sugar management. I soon hope to get on a CGM (continuous glucose monitor) to help with regulating my blood sugars and identify blood sugar trends.

All these hurdles I have had to learn throughout the years with managing diabetes, without a pancreas, has been such a learning experience. It has led me to open up about my diagnosis. There are so many misconceptions of how diabetes is diagnosed and how many types there are. Not many people know you can become a diabetic with having your pancreas removed, let alone even live without one. I think it is very important to spread awareness about there being more than one type of diabetes, because it helps the community as a whole. We all share very similar struggles, but we just happened to be diagnosed differently. What I have learned through this journey and being a part of this diabetes community is there are several different medical conditions which can affect your pancreas. What I learned about being a Type 3C  is many people will generally have a total pancreatectomy. This procedure is when the pancreas, spleen, gallbladder, duodenum, and lower stomach are removed. I did not have a total pancreatectomy, I only had the pancreas removed and everything else was kept.

Courtesy of Maya Ramirez

I used to feel so alone and very different when I  compared myself to my other diabetic friends. The biggest reason was because I have had it my entire life. I had the remainder of my pancreas removed at eight months old and I had to grow up learning how to manage such a life changing condition. I have nothing else to compare life to and I felt so much responsibility was thrown at me since I could remember. The second thing which made me feel different was having my pancreas removed. I felt like no one could fully understand what type of pain I was having after I would eat. I was beyond happy when I joined the diabetes Instagram community and I met other people like me. It was such an amazing feeling to meet others who I could relate to on this level.

What I hope to see eventually is more education on all the various different types of diabetes. I want there to hopefully be more research on my condition, Nesidioblastosis, and other conditions which affect the pancreas. I think it would help better our diabetes management, because our bodies function differently without this important organ.”

Courtesy of Maya Ramirez

This story was submitted to Love What Matters by Maya Ramirez of Sacramento, California. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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