Wednesday, February 28, 2007

Great endo visit

Wow, I had a great time seeing my endo. I must admit that can't give her my highest recommendation because she's so busy she can't return phone calls until after 5pm the next day (or sometimes the next week if you call on a Thursday or Friday), but she's so fun! Yes, really.

I got my new data cables this morning and hastily uploaded my data and printed out a bunch of stuff. I didn't have much time to look at them, but I really like the reports on Carelink; they're good at showing the right data. The endo was so happy to see them; she said she loves data. Good thing, because I do, too. I was feeling bad because I hadn't done any logs, but I ended up not needing them. We didn't really talk about famous diabetes clinic, but at one point she said, "it looks like you do really well when the settings are right." Heh.

She completely understood why I don't have different basal rates or insulin sensitivities right now - everything is changing, so it's all I can do to just keep up with that. It's difficult to gather enough steady data. She said it looks like all my settings are good, but she agreed that I could lowering my ratio to 1/13! I'm amazed, because I think the reaction of 99% of people would be to look at the current numbers, say they're great, and that I'd have lows if I took more insulin. I'm pretty sure I won't, though; my body is just weird that way.

She'd ordered a cholesterol test, but I don't do fasting so well, and I just had it done in June, so I said no. I brought in the results (looks like they never sent it over, big surprise), and finally! Someone looked at my results and had the same reaction I did. She said it was excellent. Can you believe that I needed/wanted someone to congratulate me on my cholesterol test?

My A1c was 5.3%, up from 5.1% in November. I can probably only expect it to rise as my insulin production declines. I hesitate to even disclose the number and often don't on forums, since the tendency is to compare it to a regular Type 1 number. That, or to insist I must be having lows all the time, or in the middle of the night. I'm not having lows, I promise. It's really just the insulin production and the lack of overactive hepatic glucose production. Neither of those things lasts forever.

The endo said she wished I could come in and give a motivational talk to some of her other patients. I really do wish I could, but I get quickly overwhelmed by negative attitudes, and I'm just not good at turning them around. Also, it really is a lot of work, and many people just can't do it, or wouldn't have as much success even if they did do it. Still, it was great to get a lot of validation...from a doctor! I think some of you might be hearing me on this.

Monday, February 26, 2007

Oy vey

I am giggling like a madwoman. It's really not funny, really. Heh. Ok, I have an appointment with the endo on Tuesday Wednesday. I thought it was on Tuesday, but it's on Wednesday. I opened up my pump box last week to get out the data cable and download my data. Except, it wasn't in there. The software was, the meter was, but the cable was not. What? So, I called MM to have one overnighted to me. They said it was supposed to be in the box, so they sent it for free! I got it today. I was very surprised to see that it's just a USB cable with a test-strip-looking thing on the end of it. It looks flimsier than actual test strips, even. So I plugged everything in and started installing. Somewhere in the middle, I accidentally knocked the meter off the chair. The connector broke off inside the meter *and* at the base of the cable. So I had this cable about five minutes and broke it. I called MM again and got the same guy (he must think I'm a nut) and he said he'd send me two more, free overnight shipping. But it's the last time!

I shouldn't laugh, really, but come on!

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.

Tuesday, February 13, 2007


Well, it seems there is no end to strange diabeted-related goings on I can have in only one month, heh. This morning I woke up and tested (81). Then I went to the bathroom (trust me, this is relevant), then started the coffee and went to check my email since it takes 30 minutes for the coffee to cool off enough to drink. After 30 minutes, I bolused for breakfast, then went to the bathroom again (huh? okay). But this time, something was different! My tubing was hanging free, neatly sliced in two. What? How could this happen? I literally have no idea. It was in my pants the whole time! (Hey, I heard that giggling). I stay far away from anything in the least bit sharp; I can't even have tags in my clothes. The cut was closer to the infusion set, so I can't even come up with some weird pump-cutting-tubing scenario and anyway, it was fine 30 minutes before! So it's completely inexplicable.

Anyway, my breakfast bolus ended up on me, so what did I do? Well, I rewound the pump, changed the tubing, and reconnected it to my infusion set. Then I did a fixed prime. I did that because I know missing a little insulin isn't going to have a huge effect on me, and I can always do a correction. Trying to (needlessly) insert an infusion set before breakfast and coffee, though? I don't think so.

Saturday, February 03, 2007


There's a first time for everything. That's what they say. I've just reached another first: my first scary diabetes moment.

There I was sitting on the couch, long after dinner. I noticed I was trouble focusing on the captions as I watched tv (I always have the captions on). As time went on, I started to feel, well, high. But how could I be high? My blood sugar was perfectly fine after dinner. I'd just tested at 86 an hour before. I don't *ever* have random highs. Do I?

I checked. 215. What? I wouldn't ever expect anything over 95 at this hour. I even went without basal insulin all day the day before I started pumping, and I was perfectly fine. That was only a month ago! I washed my hands and tested again. 209. I stood up and walked to the office. As I walked, I could smell the high. My meter hadn't lost its mind. I got out my Precision Xtra to see if what I was smelling was ketones. I wasn't thinking very clearly, I admit.

Sidebar here: if you have a Precision Xtra and you've never learned how to use it, do it before you need to. You should have heard what came out of my mouth trying to figure it out. After 10 minutes I realised I didn't need to figure out how to put a lancet in (it was nowhere in the instructions) because I have my own lancing device. Finally I got the giant drop of blood in there. Countdown....then .1. What the hell does that mean? Ok, that's the lowest detectable. Hooray.

I decided to change out my site, but not the reservoir or tubing because I just put it in yesterday and I can't afford to throw away that much insulin (another story). Bad site! Bad! As soon as I took it out, I could see that things were not right. It's too soon for me to tell if it's infected, but I definitely hit a blood vessel (and somehow didn't feel this when it went in), and it sure was angry.

But the high is not supposed to happen to me. I've suspended my pump for hours at a time. I've had pretty consistent blood sugars every time I haven't recently eaten since forever. I'm taking a higher dose of basal than I supposedly need, to preserve my beta cells. I'm still making insulin, right? I know to some of you this isn't much of a high, but in the universe of my diabetes, this is firmly against all the known laws. This changes everything for me. Now DKA is a part of my universe, and all the laws just shifted.