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My Diabetes Misdiagnosis Story: You are Not Alone

* Check out the Mito x Diabetes tab for more medical information.


I'm not quite sure where to begin... maybe winter of 2017? I honestly don't remember much. I started going to an endocrinologist January 2017. An endo doctor specializes in treating patients with different types of diabetes. At this point in my life, I was a senior in high school and was about to go to college. I knew that I had pre-diabetes because diabetes ran in my family.


For about 8 months I started taking insulin shots, also known as multiple daily injections MDIs. It was hell. If anyone really knows me well they would know that I am afraid of needles and blood in any situations. My doctor at the time though that I had type one diabetes, that's why I had to give me self insulin injections. I would write about my experience with MDIs but I am not ready yet. It was literal hell. Imagine giving your self an injection everytime you ate or if your blood sugar went up too high. Just a small glimpse into the MDI experience I had to do an injection before prom and almost passed out from crying so much in the car. I am so glad that I do not have to do MDIs anymore, but I might have to if my insulin pump fails.


During the time that I was giving my self MDIs, I was also seeing a special therapist. The therapist who I saw was helping me with my fear of needles and other diabetes related items. I am not sure why I was so scared and traumatized by needles because I lived with my sister who has multiple disabilities for 17 years and diabetes runs in my family. I would travel with my mom an hour away from school almost every week to see this therapist because diabetes would take over my life in the next few months.


In about early 2018, I got an Omnipod. An omnipod is a tubeless insulin pump that is reliable for most people and very easy to put on. It took me at least a year to be comfortable

telling people about my insulin pump. Only the school nurses knew and staff at school. The Omnipod has given me so much freedom and confidence to do things that I wasn't able to do when I was in high school, like eat lunch with friends. The fact, that the device is tubeless and the needle in it is very small, saves so much time not worrying about changing my pump. I have to change where my insulin pump goes on my body every three days (ex: abdomen, stomach, upper arm). It does cause several bruises, but I have gotten used to it now and it heals pretty fast.


I also got a dexcom the following year. There's a blog post all about the dexcom device somewhere. I'm too lazy to write it LOL. People are always in shock when I tell them that I have two needles in my body. I swear they are the world's smallest needles and I don't feel a thing.


Do I have Type One Diabetes?


From 2017-2020, I thought that I had Type One Diabetes because that is what my Juvenille Endocrine Doctor told me. Apparently, I have been wrong for 2.5 years or so. I recently transitioned to an Adult Endocrine doctor during the pandemic. I know scary because I had to obtain all this new information by myself. At my appointments, I had to get several blood draw and urine test done also called C-Peptide tests. These C Peptide tests measure the amount of c-peptide in your blood and urine to help tell what type of diabetes you have. (I totally, just stole that from google.) After several painful blood draw tests, I finally got my results back which were technically just a bunch of medical notes that I did not understand. When I asked my doctor if I had Type One or Type Two diabetes, he didn't reply with a straight answer through email because of the pandemic. In a bunch of fancy doctor words, he explained to me that my Mitochondrial Disease makes my pancreas weak and not produce insulin. That is why I have to wear a pump and dexcom everyday. So technically, I DO NOT have type one diabetes, but I think I do in my mind because that's what I was told earlier on.


I hope that someone can benefit from reading my blog and realize that they are not alone too. I write to tell my story and inspire people. I actually like putting my story out there on the internet, I feel like it is a good way to spread awareness. Happy national diabetes awareness month warriors.





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