Wednesday, April 9, 2008

Labels, labels, labels

Insulin-dependent, non insulin-dependent. Type 1, Type 2, Type 1.5. Juvenile Diabetes. Gestational diabetes.

I can’t be a Type 1 diabetic because I wasn’t diagnosed until adulthood.

I can’t be a Type 2 diabetic, because my physical body has all the traits of a Type 1 diabetic.

I can’t be a Juvenile Diabetic, because, again, I was diagnosed after puberty.

I can’t be a Gestational Diabetic because I’ve never (no offense to moms everywhere, but thank god) been pregnant.

So the only thing that’s left is Type 1.5. Which someone asked me if I was, because they couldn’t believe I could only be on Lantus, and still be eating.

But according to everything I’ve read, I can’t be a Type 1.5 diabetic because of the way my diabetes was diagnosed and what my situation was when it was diagnosed.

From other bloggers and from some medical Web sites, I’ve read that Type 1.5 diabetics usually can control their sugars with oral medications for several months, and in cases, even a year or longer. Then the oral medications stop being effective and they move to insulin.

Part of me wishes I could be labeled as a Type 1.5, because then I would have had some sort of adjustment period, some amount of time to get used to the idea of being diabetic, time to learn the math of carb counting, time to gear up the courage to stick myself with a needle every day. Time to research, examine, talk to people, figure things out. But I didn’t have time.

One week, I felt a little tired. The next week, I couldn’t get enough to drink, I was peeing all the time and I felt completely worn down. The next week, I was in the ICU with ketoacidosis and an insulin drip. The next week I was home, shooting up insulin and throwing away every scrap of food that had sugar in it (Because isn’t that what all newly diagnosed diabetics do? Throw away sugar because they haven’t figured out yet that yes, you can still eat a cookie?)

After the non-stop retching and vomiting finally stopped two days after my admission to the hospital, after I was finally aware enough of my surroundings to complete a sentence as well as understand one, I was given a crash-course in how to be a diabetic. I was taught how to give myself a shot by a diabetes educator who stopped by my hospital room for an hour and showed me how to work a syringe by demonstrating on a sponge ball. I was taught how to carb count by a dietician who stopped by my room for an hour and walked me through it using plastic steaks and mashed potatoes to demonstrate serving size. They were both very nice and gave me a ton of brochures and pamphlets and charts to take home.

I’ve never felt so overwhelmed, so under-educated, so unprepared for anything in my life.

I went online to see what I could find out, and, unfortunately, “blogging” was still a funny word to most people and the only “real-people” information I could find were horror stories written in the comments sections of medical Web sites. I vowed not to do any online research anymore (luckily both I and the World Wide Web have changed) and resorted to putting an ad in the paper for a Diabetes Mentor. I just wanted to talk to someone who knew what I was going through, and who could give me advice about how they handled it. No one answered and I knew I was on my own. I figured out what I had to figure out, asked questions and did a lot of trial and error.

So the label thing. What type of diabetic am I? I’m the kind who requires insulin to stay alive, counts carbs and pokes my body for blood multiple times a day. I call myself a Type 1 diabetic because that’s what my body tells the doctors I am, and that’s how I’m treated.

I have big issues with people confusing Type 1 and Type 2 (as always, more later), but adding the 1.5 into the mix just seems to make things more confusing.

I know research is important in looking for a cure for diabetes, but maybe, just maybe, someone—a doctor, a scientist, a chemist, an inventor—can take a break from trying to produce 1.5, 1.6, 1.7 labels and focus on making them all go away.

Label me…

As always, more later.


Laura Williams said...

As much as I hate to give you another label, but have you heard of MODY, Maturity Onset Diabetes of the Young?

There are quite a few different kinds of MODY and one may match what you've been going through.

As I understand it, it's a different thing again from Type 1.5 / LADA (Latent Autoimmune Diabetes in Adults) (More on LADA at Jenny's site)

Jonah said...

Type 1 diabetes can be diagnosed at any age- being young is not an absolute requirement. If you had ICA antibodies, or were in DKA at diagnosis and afterwards had a cpeptide of udner 2, that's a really strong indication that you're looking at type 1.
Type 1.5 isn't typical type 1 just later- it's also a slower onset, not requiring insulin until months to years after diagnosis.

Anonymous said...

Ouch. I am sorry that we got off on the wrong foot. I'm just trying to understand. If you can control your Type 1 with only Lantus and have numbers from 80-120, we want to know how! Enlighten us!

Anyway, welcome to the D-blogosphere. We're actually pretty nice. =)

in search of balance said...

I'll agree with Jonah and say that Type 1 doesn't have to be diagnosed in childhood. I was 23.

I am also often frustrated by the lack of knowledge about types of diabetes... I hope you'll join us on April 14th for Raise Your Voice, the Type 1 awareness day that Kerri at SixUntilMe started!

Lora said...

Thank you for your comments! I've looked at the links you sent, Laura, about MODY and I'm still not sure I fit. I'm guessing I'm not the only one with diabetes who's not still puzzling.

Amalas: I meant no harm, and my posting was something I would have done anyway. Your comments just made me do a little more thinking about it a little more quickly. We exist in peace--and thank you for your welcome.

Laura Williams said...

The whole mody/lada issue makes my head spin too. This is not a simple disease!