Still Here

Hello,

This is my story of living with type 1 diabetes for over 26 years. I was diagnosed at age 12 in 1983. I was in diabetic ketoacidosis (DKA) for two weeks before being admitted to the hospital. My blood sugar at the hospital was 490 mg/dL and I had lost 25 lbs. in six weeks. Back them home blood glucose monitoring was just beginning to catch on, and I was sent home with a strict exchange system for food because the insulins I was prescribed, Regular and Lente, did not accommodate much change. For about a year I used a home urine test kit that involved a test tube and chemical tablets that turned various shades of green/orange depending on your blood sugar level…and sometimes the reaction was so violent, the test tube shattered on the sink! My first blood glucose meter, an Accu-Chek, took over a minute to read the test strip.

I was lucky to have very involved, committed and protective parents, teachers and friends. No one ever really teased me for having to take shots or eat different foods. At the same time, no one wanted to talk about it or ask me how I felt about it. Even my doctor was more interested in my A1C levels than my coping abilities. Summer camp was also never discussed as a way for me to meet other ‘juvenile diabetics’. I often felt different and left out, even if my friends liked me and my family supported me, because I had no one to talk to about the ups and downs of diabetes.

I went through a bit of rebellion in my early 20s and took a couple of short ‘diabetes vacations’. This involved not testing, guessing at how much insulin to take, and not following my meal plans. I lost weight and thought it was normal to be riding high in the 200-300 mg/dL range for days on end. When I got my own apartment for the first time, I realized I needed to take better care of myself. I also got a new doctor at that time who worked very hard with me to get my numbers in order. She introduced me to Humalog and Lantus, and set the bar very high for my care. Luckily, I was able to get back in gear quickly and suffer no complications. She is still my doctor today, and is still just as dedicated to making sure I’m okay.

For the last 12 years my A1Cs have been under 7, and for the last 5 years they’ve been at or around 6. Like other long-time type 1 diabetics, I make sacrifices to keep them that way; I eat healthy foods, I have never smoked or drank alcohol, and I walk 2 miles a day (I was a long-distance bicyclist for many years). I also suffer a lot of hypoglycemia (‘lows’ or reactions) due to constantly staying on top of my blood sugar numbers. Unfortunately, over the years I’ve lost some ability to know when I’m low–I’ve dropped into the 40s without a symptom–but I’m lucky to never have passed out, or required glucagon, or a trip to the ER.

I was always a good student and completed college and graduate school without any real problems. I did have to give up my dream of becoming a veterinarian, however, because I was unable to keep up with the pace of my studies. I currently work at a nonprofit organization as a program associate. I think my career choices were definitely limited by diabetes. You can do ‘whatever you want’, to be sure, but it comes at a price. I simply never had the freedom to choose a career without the worry of having health insurance coverage. I spent three years in a state-sponsored health plan at one point and nearly went broke from the monthly payments. If you have the support of a spouse or family, I think it is much easier to try out unconventional sports or jobs than if you are on your own.

Socially I was always the ‘shy kid’ but I came out of my shell in high school and in my 20s. I definitely suffered a few fools while dating, more than one guy decided my diabetes was too much for him to handle. But all that just cleared the way for my husband to appear, I guess 🙂 We met when I was 34 and have been happy together since. As for children, it is difficult to say that type 1 diabetes alone is the reason we don’t have any; it was never presented as a barrier for me, but the risks and reality of a pregnancy were also never sugar-coated. Certainly thanks to movies like “Steel Magnolias” I only ever heard horror stories until the Internet came along.

My mother, who was my champion and took such good care of me, was the one person I had to reach out to before the OC. She died in 2002 and since then I sorely missed having someone to share my ups and downs with. Then I discovered the ‘Diabetes OC’ (Online Community). I always felt so alone, so alien and foreign, and then one day I came across a blog (Six Until Me) written by someone just like me. I started my own blog and people ‘got it’ in a way no one has ever understood before. It’s definitely as important as all the physical parts of taking care of my diabetes, and I would be lost without the comraderie and real friendship I’ve encountered.

Thank you for the opportunity to tell my story!