Friday, February 23, 2007

What is LADA?

Sometimes I forget I'm diabetic. I wake up in the morning and go about my business, forgetting to test my blood sugar. It's not until I'm about to eat breakfast that I remember. That fasting reading is really important to me, though. I don't mean to forget; it just happens.

This is LADA. I've only been diabetic for two years. It hasn't pervaded every aspect of my existence yet. Most of my memories are not diabetic memories. When I dream, I usually don't have diabetic dreams. Is it easier or harder this way? I don't know. Does anyone really know? Does it matter?

So what is it like to have LADA? It has its good aspects and bad aspects. Sometimes, though, it's hard for me to tell them apart.

Good or bad?

- Growing up without diabetes, you had a "normal" childhood filled with overdosing on candies, pies, cakes, cookies, and high carb foods during every celebration. You expected to carry on these traditions as an adult. You have to reject or modify big aspects of your culture, which alienates your family.

- After a lifetime of spontaneity, you find out that you're going to have to think about everything you eat for the rest of your life. You can't just drop everything and go somewhere, or eat something, or just be in the moment. Low maintenance is valued, and high maintenance is maligned, but you no longer have a choice.

- Everyone knows you can't get "juvenile diabetes" as an adult and you're (generally) not in DKA, so you must have Type 2. Your family, your friends, your doctor, your diabetes educator, and even your endocrinologist will tell you this. LADA? What? That doesn't even exist.

- After trying to connect with other Type 2s and finding out that you have very little in common with them (no insulin resistance, no lifestyle to change), you try the Type 1s. Many of them don't want you, either.

- There is no book about LADA. Explanations of the effects of insulin on Type 1s and Type 2s do not apply to you, until you stop making insulin. Insulin formulas often do not apply to you. Information widely available for "honeymooning" Type 1s is for children. You will be told what does and does not affect your bg, but get different results. You will be told you shouldn't be testing your bg, shouldn't be on insulin, given inappropriate insulin doses, and fear ever being admitted to a hospital, because you could die. You will have to work hard to find any information that is even applicable.

- Since so little is known about LADA, it takes years for you to amass a wealth of information about it. Because this information is not collected anywhere and is barely touched on by existing resources, people will often inform you that you must be wrong about it. You will try to advise other LADAs, but with the majority of people giving advice from a Type 1 perspective, they won't know whom to believe.

- You're still making insulin, years after diagnosis. While this means that you probably won't have as many severe lows and you'll have a much easier time controlling your bg with a buffer of endogenous insulin, it also separates you from other Type 1s, and sometimes the chasm is just too deep to cross.

- You can do really well on a carb counting regimen or an insulin pump, but you will repeatedly be told that this is impossible. You should really just be on Type 2 drugs until your beta cells burn out completely.

- You will finally get approved for an insulin pump, and sent to a clinic for training, where they inform you that instead of 1/14, your new insulin ratio is 1/35. When you start to run high and feel awful, you are told that these are normal numbers and that you should stop complaining. You point out that the safeguards are in place to prevent lows, and you're not having ANY, but no one will listen. The formula can't be wrong; it's been tested on hundreds of Type 1s.

- When you finally break free of the clinic and start adjusting on your own, you find that after 2.5 weeks of running high, your insulin production has declined very rapidly. Coincidence? Who knows.

- Getting diabetes as an adult means that you will be told you're "not a real Type 1" and told you can't join someone's group because of it. You don't really "know what it's like." You can't. Your good friend is a Type 1; surely they can support you, right? No, your friend is strangely distant, mutters about how you "gave diabetes to yourself" and tells you that you should have exercised more. Once the confusion about LADA is finally cleared up, they still don't think of you as "a real diabetic."

- But getting diabetes as an adult also means that you're doing all your learning as an adult. You can become very informed about your diabetes right at the beginning. You have access to excellent modern treatments.

Yes, I know not everyone has the same experience, but this is mine. I know the people who think LADA is all sunshine and roses probably aren't reading this, but I guess I felt I needed to write it anyway. Not many people are telling my story, so maybe someone should, even if I'm not the best choice.


Chrissie in Belgium said...

Not fitting the text book rules is VERY, VERY difficult. That I understand. Thank you for explaining what you have experienced. Being a T1 since 10 years old, I wouldn't have understood without this post!

Chrissie in Belgium said...

Pls add the words "your situation" after the last "understood". Forever making mistakes......

Megan said...

I totally agree with you. It's hard not fitting the textbook. I struggle with the same feelings. I also find that I sometimes ignore it more than I can get away with just because I can get away with some ignoring.

I think I'm probably closer to a plain old type 1 than you are though. I am getting to a point where I have severe lows and bad highs. If anyone asks, I just tell them I have type 1. My doctor ever calls me type 1.

Good luck.

Megan said...

Oh yeah, and even though I was diagnosed at 19 with diabetes, I've been doing some of the low carbing and that whole bs testing thing since I was 14, so I have that on my side too.

Lili said...

Chrissie - indeed, it's amazing how little seems to be in textbook. Now that I know this more firsthand, I guess I'm less surprised at what doctors don't know!

Megan - I am moving to that point more every day. My last c-peptide was 1.0 and I know it's gone way down since then, so that brings it into the "Type 1" range.

Tiffany said...

You did a fantastic job of expressing your frustrations Lil!!

It's tough, isn't it? Though not as broad as yours, I do come up against these sorts of prejudices by just being an adult Type 1. Doesn't matter what I look like, even; I'm just too old to have Juvenile Diabetes. Period.

Hey, we miss you at Insulin Pump Forums! :) You're always welcome at our group!

Lili said...

Tiffany - thanks! And the ignorance about diabetes out there is amazing.

Bethany said...

Hi Lili - I'm so glad I stumbled upon your blog! Your LADA sounds an awful lot like my MODY, both physiologically and psychologically. Like you, I get sick of my medical team throwing around words like "compulsive" and acting like my compliance (overcompliance?) is a bad thing.

I'm looking forward to catching up on your blog posts this week. It's always exciting to meet other diabetics my age with an uncommon diagnosis.