Monday, November 21, 2005

Oh, the technology!

OK, I’ll try and keep this rant a bit shorter, in the hopes of actually being able to post more often. I’ve actually been doing pretty good, BG-wise, for the past few weeks. Except for waking up at about 60 in the morning, which I’m afraid to play with since everything else has been going so well.

Which leads into my rant, which is about the level of technology available for use by people with diabetes. Don’t get me wrong. I love having a pump, and I’m really glad I didn’t get this disease until after the availability of home BG testers (not to mention really REALLY glad that it was after the discovery of insulin, unlike one of my great-grandfathers, who died in the early nineteen-twenties a few months after being diagnosed - wonder which type he was). But, the technology just isn’t quite "there" yet.

For example, why isn’t there some way of telling if your bottle of insulin has gone bad, other than injecting it and waiting to see what happens?

I tend to be both incredibly sensitive to insulin and to carbohydrates. This is wearing off a bit as my honeymoon ends, but last February I had a correction factor of 1 unit for 80 points and BG readings that were just all over the place. So my doctor suggested I wear the 72-hour continuous glucose monitor to see if we can get a picture of what the heck was going on. Wow, that will really be useful, I thought. Until I found out that I don’t get to see the numbers. And that the piece of equipment you had to wear looked like a Radio Shack remote control from the 1970s. And that the thick rubber cable didn’t detach when you took a shower, so you had to wear it in a baggie around your neck in the shower. I suddenly knew how a cat feels when it has to wear one of those plastic Elizabethan collars. If I had cat ears, they’d be flat back against my skull. Mad, and humiliated. And wet.

My CDE explained to me how to enter in all my carbs, exercise, and readings (and I’m not even going to go into to user interface design here). She also mentioned that it won’t pick up readings below 45 or so.

"But will it beep or something if it gets that low, to warn you?" Well, no. That would be the next generation. Lovely.

Anyway, I wore the thing and dutifully entered everything I could think of. I even ate the same breakfast and lunch every day, and have virtually the same dinner, too, to eliminate as many of the extra variables as I could (two or three out of dozens, doesn’t really help, but made me feel more in control ; )

My fingersticks were my typical 60-220 or so. I had one reasonable day and a couple of bouncy days. Then I turn in the monitor and get a copy of my readouts in the mail.

Whoa! Turns out one night, where I’d gone to bed at about 160 and woke at 70, I had really nose-dived immediately after falling asleep, hit "too low to read" by 1 am, and despite my body trying three times to push my BG back over 70, it didn’t happen until I woke up and had breakfast. I was psyched about the 70, but then ate the same breakfast as the day before and this time went over 220 with it. I had two lows around 50 late that afternoon too.

So what would happen, I keep asking myself, if my liver didn’t kick in at 2am and try to dump in some sugar? For that matter, what did happen, between 1 and 2 that night? I don’t know, I was asleep. And just how often does it do that, anyway?

For months I tried setting alarms at random points during the night, only to discover the diabetic’s equivalent of the Heisenberg uncertainty principle: you can see what your BG is, or you can sleep, but waking up enough to measure it basically stops what you’re trying to measure in the first place, and shifted my predictable late-afternoon low to random times throughout the day.

Here’s a shot of the CGMS readings, each day a different color. Keep in mind this was with food and exercise levels as close to identical as I could make them.

So after months of pestering my CDE that there has got to be something better out there, I find out about the study. It’s for an integrated pump and continuous monitor. You wear a sensor that’s inserted like an infusion set, (and then taped in place) and it broadcasts readings to the pump, giving you a continual readout. Great! There’s a six month study period, followed by a six month extension, where both the sensor and control groups get to use the sensor. I am so psyched about this, this may be my only way of tracking down my incredible bouncing BG to some sort of reasonable a1c value.

So I go for the preliminary screenings, wear the klunky old CGMS around for a week (can’t see those readings until the end of the year), and finally get enrolled – in the control group. Man, that was disappointing. So for the past five months, I’ve been using a pump and monitor for the study that I like less than my Animas 1200 and UltraSmart, and uploading my values a few times a week, plus talking to the dr’s once a week or so and tweaking my basal settings. It took four months of guesswork for my readings to get to something approaching the level of control I’d be happy with, and of course I’m amazed it’s stayed okay for even these last few weeks. It’s so frustrating to know with a sensor I could probably straighten things out within a week or so.

But, I’m trying to look on the bright side. Right now, what I’m thinking is that I have documented evidence of six months of intensive work between me, my doctor, and my CDE, resulting in an average a1c over this time of: 8.0. Really, eight point frigging oh! How on earth can I put this much time into something and not see some better results! Oh, yeah, bright side, bright side.... Well, what I’m thinking is, when I also have six months of documentation on what my BG is with the sensor, I’ll have a very good argument for my insurance company that I need this device! And that paying for the sensor might be cheaper than paying for me to have a weekly appt with the doctor, not to mention the complications that I’m trying like mad to avoid...

So anyway, that’s where I’m at now. So much for the shorter post - it’s just that when I’m pissed ("motivated") enough to write, I tend to just dump it all out. Stay tuned for a report on the sensor, which I get to use just in time for Christmas ("Hey, watch me eat this brownie!")

Have a happy turkey day, all!


PS - yes, it’s OK for any members of the "OC" out there to link to my site - drop me an email if you do. And I do plan on fixing the ugly colors on here at some point....

Sunday, November 06, 2005

My Diagnosis

I’ve read many stories talking about how people were first diagnosed with type 1 diabetes after an illness - in fact, I’ve read claims that there "must" be a viral infection to set it off. Which isn’t me. I honestly don’t think I had so much as a cold for at least six months before diagnosis, and I hadn’t taken a sick day for me (as opposed to the kids) in two years. To be truthful, everything at home had been going so smoothly, I was getting a bit superstitious about it. We were past due to get hit with something. Big. And we were. How I was diagnosed with this serious, all-consuming, pain-in-the-ass disease was: I went for a physical.

Looking back, there had been a few symptoms: my eyesight had seemed a bit blurry for a while. But I was almost 37, had been working on computers 10-12 hours a day for 20 years. I figured maybe I finally needed glasses. And I was going to the bathroom more often, even if it seemed like just a tiny amount was coming out. I would go just before I left work, and by the time I’d picked up the kids and gotten home an hour later, I would have to charge into the bathroom again. I figured it was a urinary tract infection, but I had a dr’s appt less than a week away, so I wasn’t worried.

I was drinking a bit more than usual too, but nothing drastic. Certainly not anything out of line with what everyone else was doing with the dry office building heat. The one time I was really thirsty, two days before my physical, was when I’d been at saber fencing lessons with my then-eight-year old. We’d had a real workout in too-warm sweatpants, were dripping with sweat in December, and on the way home we got an ice cream cone as a reward. I got home and drank three glasses of water - very unusual for me - but the next day I was fine.

So I wasn’t really expecting it when instead of the nurse coming in for the usual stuff at the start of the checkup, my doctor comes in instead. He says my fasting urine sample had sugar in it, and they wanted to double-check with a finger-stick and then maybe draw some blood. The finger-stick showed 232. My doctor (I’ll call him Dr A for this piece) asked if anyone in my family had diabetes. Well, my grandmother had it since her sixties. And my dad was diagnosed about a year ago, in his early seventies. Both had done fine with just diet control, which I had vaguely assumed meant cutting down on sweets.

Dr A seemed very surprised that someone my age and build (5 foot 6, 128 lbs) would get diabetes. He wrote out a prescription for a meter and told me over the next two weeks to check once a day: sometimes when I woke up, sometimes two hours after a meal. He said to cut down on my carb intake - rice, pasta, potatoes, sugar, bread, etc. "You mean like Atkins?" I asked. Atkins was pretty much at its peak then. "Yes, like that. Eat less, exercise more, and call me if it goes over 350."

The only thing I had presence of mind enough to ask was "this can only mean diabetes, right? It can’t be anything worse?" Boy, was I naive.

I got a bunch of type 2 diabetes pamphlets in a bag. Welcome to the club.

I went home, somehow managing not to blurt out my bad news or start crying until after the kids were in bed. I did another finger-stick. 283.

My husband probably saved my life by going off to amazon and rush-ordering me a book. The First Year: Type 2 Diabetes. I read it through twice in one day. Dr A called to tell me the lab test came back with an a1c of 9.2. Definitely diabetes. "But what about type 1?" I asked. The book talked about how many thin type 2's were actually type 1. Well, that wasn’t too likely, Dr A said, given that I had a family history of type 2 (???) And anyway, it wouldn’t be treated any differently as long as things were working.

So I went thru Christmas and new years on an ultra-low carb diet. It seemed to work, at first. I had fasting readings in the 80s in January. Then Feb came, and kicked off a month of pure hell.
To start off with, I got a sinus infection, and my bg readings were back in the 290s. I was also running a temperature of around 101 all the time. I went in, got antibiotics, and the sinus infection went away. The temperature didn’t. I could not get a temperature reading below 100 degrees for 22 days. I bought 2 different thermometers, made my husband take both our temps in case there was something wrong with my technique. Dr A checked for a urinary tract infection - nothing. He did blood work, looking for other weird viruses. All negative. My BG readings remained high. He told me to eat less and exercise more. At this point I was down to 24 g of carbohydrate a day and 90 minutes on an elliptical after supper every night. It didn’t help.

The blood tests started getting more esoteric, and more scary. We even did a C-T scan, looking for tumors. I kept asking "Could this be connected to the diabetes?" and kept being told no. I complained that I ate virtually no carbs and my blood sugar still went up 100 points when I ate. Dr A said I was testing too often. Once a day was plenty for type 2. I responded I wouldn’t test more often if every time I tested I saw values between say 100 and 130, but I was seeing things like 187 - 316 - 248 - 325 - 192....

I stopped going back to the doctor’s about the temperature, figuring he was out of ideas anyway. In March I went back to Dr A and asked him to run tests for anti-GAD, anti-insulin, and anti-ICA. He’d never heard of them, but agreed to have them done.

I got a phone call from a nurse about the results. Dr A was not available, but in the background I heard his partner complaining "Who ordered these tests? We never order these tests. I don’t even know what they’re for." The lab had never ran the anti insulin one. The anti-GAD lab normal range was from 0.0 to 0.1 and I had 128.2. Anti-ICA was usually negative and I had 38. "Um, what do these test mean?" The nurse asked. "They mean I want a referral to an endocrinologist and I no longer wish to be seen by this practice." I did phone Dr A later and politely informed him that it was indeed type one diabetes, and should he ever see another patient with similar symptoms, please keep that in mind and not put them through four months of guesswork.

Enter Dr B. I was probably the first patient he ever had who was relieved to be told they needed insulin. At this point I weighed 111 lbs and since I am 5'6, looked like a poster child for eating
disorders. Or in my case, not-eating disorders. We phased in insulin using MDI and gradually phased in the food as well. But what really pissed me off about the whole runaround was that two seconds after Dr B first walked into the room, he touched my forehead and said, "You seem to be running a temperature. That is very common in autoimmune disorders." So much for all the expensive testing over the whole month of February.