Back in December of 2019, while I was pregnant with my first child, I was diagnosed with gestational diabetes. I remember everyone, including my doctor, telling me that it was “no big deal!” “So many women get it!” “Yours isn’t even that bad since you’re just managing it with diet!” “It’ll go away after your baby is born!” However, being the worrier that I am, I did lots of research and realized that it can be a big deal. As well as it doesn’t always go away after your baby is born. (Side note: it was a big enough deal for me that it did cause other health issues with my pregnancy – I had to be induced two weeks early, my daughter still weighed 8 lbs 6 oz and spent a day in the NICU with extremely low blood sugars because my diabetes was not managed well enough with just diet.)
About 9 months after my daughter was born, I was still feeling sick and exhausted all the time. I knew “moms were always tired,” but we were both sleeping well at this point and I was still inexplicably tired all the time. I tried to ignore it, until the other symptoms started affecting me. In a span of about three weeks, I went from just feeling tired and kind of yucky to having blurry vision all the time, being constantly thirsty (like a guzzling-half-a-gallon-of-water-and-still-needing-more kind of thirsty), and having to use the bathroom constantly. I was also fifteen pounds lighter than my normal pre-pregnancy weight, which was on the lower end of healthy to begin with. I told my husband that I knew those were signs of diabetes, but I was too scared to look into it because I didn’t want anything to be wrong with me. It wasn’t until I talked to my mother-in-law, who has Type 1, that I finally took it seriously. The next morning, I checked my fasting blood sugar and it was 192. I made a doctor’s appointment with my primary care doctor that same day, and after doing some research, I was sure I had Type 1. I called my family to let them know what was going on, and they all tried to tell me that I was fine, and if anything, I had Type 2 because our family has no history at all of Type 1, but I had already made up my mind that I was type 1.
I went to my doctor’s office to do some blood work, and they tested my BG before giving me the glucose drink – 225 fasting. My doctor came in and told me with no hesitation that I had Type 2, even though “that seemed weird because I didn’t fit the typical description and build for Type 2.” I was prescribed Metformin and other medications to protect my heart and kidneys.
A few weeks later, my fasting sugars continued to go up to close to 250 first thing in the morning, even with taking 2000mg of Metformin and seriously restricting my foods. I made another doctor’s appointment because I knew something was still not right. I went in and the doctor told me, “Yep it looks like the Metformin isn’t doing enough. We’ll get you started on Trulicity as well and you should basically be back to normal. Like ‘eat whatever you want and stay at 100’ normal, like other people without diabetes.”
A month of Trulicity and my fasting numbers were now at 300+ every morning. I went to my doctor one last time on January 29th, 2021, which I consider my official Diaversary. I told him none of my medication is doing anything. For example, I had plain grilled chicken with baked vegetables one night for dinner – no sauce, sides, or seasonings besides salt and pepper – and my blood sugar was 550 two hours after eating. He finally looked at me with defeat in his eyes and proceeded to tell me that essentially, he had no idea what he was doing, gave me a sample of insulin with very basic dosing instructions, told me to make an appointment with a specialist, and sent me out the door. (However, at this point he told me I was still Type 2 but insulin-dependent.) Honestly, at this point, I had felt so defeated by all my high numbers when I was eating basically no sugar or carbs, that I was relieved to finally be given insulin so I could have a little more freedom. However, I felt horrible that I had wasted nearly two months feeling sick all the time with someone who didn’t know what they were talking about.
Finally, on February 16th, I was able to see an endocrinologist. He talked at length with me about all my symptoms and my experiences with my other doctor. He immediately said I needed to be off all medications besides the insulin. The metformin had been making me sick, and he said the other ones were unnecessary because I didn’t have high blood pressure or high cholesterol, which is what the medications were actually made for. He explained to me that we would do another blood test and that if I had Type 1 (which he said he would be completely shocked if I didn’t have it, given my symptoms), that they would find certain antibodies in my blood. He explained to me more in depth about my insulin dosing, and he reassured me that this diagnosis was not a death sentence. In fact, he told me that most people with Type 1 are far healthier and usually live longer than their peers because they must pay such close attention to their health while others don’t. He called me a few weeks later, and sure enough, it was official – I was a Type 1 diabetic. I’m now on a good insulin regimen and have a CGM, which is such a privilege to have access to.
During my struggles to get diagnosed, and ever since, I have learned the hard way that even though diabetes is an incredibly serious disease, for some reason, it’s so difficult to be taken seriously. I often hear “well at least it’s only diabetes,” when one wrong decision could be the end. People make light of it by saying “Oh I hope this dessert doesn’t give me diabetes!” My family members even made jokes at our Christmas dinner saying, “You’ve lost so much weight, what’s your secret?” when really my “secret” was having a disease that made me lose far too much weight without even trying and could’ve killed me. I’m fortunate enough to have an amazing support system, but there’s still so much stigma and misunderstanding around this disease. It’s hard to find someone who believes you when you feel something is off. While I’m grateful for good doctors that know what they’re doing and listen to their patients, my new motto these days is “Trust your gut, even if you can’t trust your pancreas.”
Jenacee is a 21 year old type 1 diabetic living in Idaho. She is a mother to a beautiful one-year-old daughter and a wife to the most amazing husband! When she isn’t worrying about diabetes-related things, she enjoys reading, working out, being outdoors, and spending time with her family.