I have always wanted to tell my diagnosis story to someone who would get it

I have always wanted to tell my diagnosis story to someone who would get it, who knows what it is to have lows or highs or keep food logs, so here it goes…

In the beginning of 2005, I was really excited to be pregnant. I was planning this natural pregnancy and birth, and was a natural medicine nut. So I was irritated with my midwife for pushing for a glucose tolerance test, because I was not overweight and therefore figured that I was not at risk for gestational diabetes. I went along with it in the end to get her out of my hair, and was pretty surprised when my midwife called me to tell me that I did have gestational diabetes. I had read a great deal of articles against the test, and started to argue it with her, and she said that my result was in the 300s (this is after drinking a huge glass of sugar water) and that there was no way that I did not have gestational diabetes. So, I accepted it and bought a glucometer started trying bring down my blood sugar with the exchange plan the nutritionist gave me and with lots of exercise. No luck. So I read Dr. Bernstein, and cut out almost all carbs and was able to bring my blood sugar to be fairly steady in the range of 145. I kept detailed food, exercise and blood sugar logs, and dutifully brought them to my midwife and obstetrician. They were upset and pretty much accused me of lying. So, in approximately my 35th week, they put me on metformin. It didn’t do much to help, and they kept increasing my dosage without much luck. I finally had my daughter at 40 weeks, and she was very healthy, although large (she is still very tall, though slim, to this day). So after she was born, the doctors said that my diabetes was gone and that I could eat whatever I wanted again. And so I did, and didn’t really think about it again (I was a first time mom with a newborn baby). I lost weight really quickly after my pregnancy. I figured that the reason I was so thirsty was that I was nursing. So when my daughter was three months old, and I was up for the fourth or fifth time in the middle of the night to pee, it started to occur to me that something was wrong. I googled something like “extreme thirst frequent urination” and there was diabetes looking back in the top of the results. I dug out my old glucometer and the (fasting) result was in the 400s. I freaked out, and went to a walk in clinic (we had no health insurance back then), and they promptly sent me to the hospital. Everyone there figured that, with my “history of gestational diabetes”, it must be type 2. They sent me home after a day on a sliding scale, with an appointment to see a general practitioner in a week. I think it was a month or two before they realized that I was a type 1 and that I had spent my whole pregnancy in honeymoon.

Things are much much better now, my insurance is awesome, and I have a pump and just got cgs, my blood sugars are pretty good (except in my last a1c, but in a few months, I will put a better number back up there), but it has taken me a long time to get over a lot of the fear and anger from that experience. To try so hard, and then have someone assume you are lying about what you eat and that you don’t care if you hurt your baby, was utterly degrading. The fact that my midwife never did any follow up about my blood sugar after the pregnancy is appalling. I also get angry because most of what I remember from that time is my diabetes, not my daughter’s babyhood. For my first low, I was at home, alone with my baby. I didn’t know what would happen, and I was terrified of dropping or bumping my daughter, so I just sat on the floor and put her down on the floor next to me until the glucose tablets kicked in. There are a lot of things that I would go back and change if I could, trying to learn how to take care of my first baby and a new diabetes diagnosis alone is definitely one of them.

Starting to ramble here, I should stop. Thanks for listening.

Awesome story. I had a similar experience, except, I was not pregnant! Glad you are here at TuDiabetes.

Thanks for sharing your story!

Your story is important as awarness for all of us.thanks for sharing…

Ohmigosh, what a nightmare. I can’t imagine how frustrating that must have been - especially while you were pregnant. Wow. I’m so sorry. Glad to hear that you finally got a meaningful diagnosis (even if it is a lifelong disease) and that your daughter is ok. I hear more and more stories of people with type 1 who are mis-diagnosed with type 2 because they aren’t children when they are diagnosed. We really need to work out a better system of differentiating between the 2 diseases, since they have very little in common in terms of treatment.