I was 28 when I was diagnosed with Type 1 Diabetes. Like most people, I grew up not really understanding the difference. I thought there was one you got as a child, and one you got as an adult. There is no history of diabetes or autoimmune disease in my family, so honestly, I never really gave either much thought.
Then, I happened to have my yearly physical. Since everything else looked good, and I was always healthy, I lagged on getting my blood work completed. A couple of weeks later I got a really, really heavy period (sorry fellas) and went to urgent care. Long story short, they found multiple fibroid tumors (the largest was the size of a bocce ball) and told me to get that blood work taken care of right away. I got it done that day, which was when the rest of the whirlwind started.
Still thinking I was healthy with nothing to worry about, my husband and I left on a week long climbing/kayaking trip. A few days into the trip, I received a call that my fasting glucose was 300. They assured me it was probably a fluke but said that I needed to come in and have my a1c tested when I got home. During our trip I started to notice some other things- that my close had been fitting looser, and I was drinking a lot of water. We are really active so I thought maybe I just needed to adjust my calorie intake, and it was 4th of July weekend in Arizona so the water intake didn’t seem too odd. I should also mention that for probably 90% of this trip we were without cell coverage- something that still gives me the chills to look back on.
When I got home I had my a1c tested. By this point I had lost 25 pounds. Diabetes was still not even on my radar, in fact my team scheduled CT scans to get a closer look at the fibroids- suspecting cancer. Then my a1c came back at 12.3. I was misdiagnosed as Type 2 for about 6 hours (thankfully not by my doctor). My doctor knows how healthy and active I am, and she ordered a rush test for the antibodies that Friday afternoon. She told if my sugars didn’t go down I needed to go to the ER. That night I tested at 634 and to the ER we went.
I was in DKA, and dangerously close to a diabetic coma. I was immediately given insulin, and Monday was setup with my endocrinologist. A few days later the test confirmed Type 1.
The scariest part for me was how little the medical world seemed to understand about my condition.
When I was diagnosed I immediately researched the difference, and realized a lot of the information I was given in the ER only applied to type 2.
I was thankful that my general doctor knew as much as she did, but fast discovered that was not the norm. This diagnosis is scary enough, but it is worse to feel like you are not always in capable hands. As a newbie, I decided pretty much right away that I needed support of other people who actually knew what they were doing. Instagram and the community I have met through there have been such a life saver for me. I am thankful to have such a great endocrinologist, but there are some things you don’t understand unless you live with it everyday.
I owe so much to this community.
From the helpful tips to the endless support and words of encouragement, this community helps make this doable. It seems so much less daunting when you such an awesome support network. This July will be my first Diaversary, and I am so glad I decided to join this 24 hour support group we call Instagram. 🙂