Sunday, November 09, 2008

It's d-blog day

Back when I started blogging in Sept 2005 it was out of a sense of desperation. Was there anyone else out there who knew what I was going through? All the reading I had done on type 1 talked about blood glucose levels that behaved correctly as long as you counted carbs properly, exercised, and found your "patterns".

What a relief it was to discover the non-textbook reality: people whose BG refused to fall into predictable patterns, people to remind me that 2+2 almost never equals 4 in the world of diabetes, people who said the same things I wanted to say, only much more eloquently.

A big part of the reason I don't blog as often is that I am no longer so frustrated with this disease. And that is because of the comments, support, and writing of all of the other d-bloggers out there. Thank you all, and happy D-blog day!

Sunday, October 26, 2008

Hanging out at the D.R.I

Yesterday I had what was probably one of my all-time most frustrating D-days, but with the greatest people to hang out with. I got up at 4:30 (after 2 below-40 lows overnight) and was already rebounding high as I took the train down to NYC and the Diabetes Research Institute’s “Diabetes 2.0” conference. I did a small correction on the train (no breakfast yet, and I didn’t want to worry about being low while trying to find the conference).

I got to the conference just as the first speaker was about to begin, grabbed some breakfast, elbowed my way to a seat between Allison and Kelly… and proceeded to spend the next 22 hours fighting against The High that Would Not Die. You’ve heard the expression “glass ceiling”? Well, this was a glass floor. I passed quickly through the “maybe-I-underestimated” and “just-bolus-again-might-have-been-an-air-bubble” stages, while my BG hit the 300s and would not go down. I could see the nice little dotted-line high threshold on my Dexcom, and soon rage bolus followed rage bolus as I kept trying to tap, stomp, and finally jackhammer my way back through the glass floor into somewhat normal BG readings. I mean, if you can’t risk a low by stacking insulin sitting at a table with a bunch of Type 1s, when can you do it?

But the amazing thing about the day was, I was not alone. Really, really, not alone. While I was fuming and running through the whole troubleshooting checklist (can’t be the site, I was low all night; basal is at 180%, 5 units on board, why the hell am I still 280) Kelly next to me was doing the same thing. While the mom in one session was talking about being worried that her son would be over-bolusing for highs while away at college, I was attempting, unsuccessfully I need not add, to over-bolus myself back down. When Bernard complained he had been above his Dexcom’s high threshold all day, I knew exactly how he felt – we even had the same threshold set! And when Dr. Rappaport asked how we react when we see a 300 on the meter, I had just seen a 304 on mine. And Kelly’s quick response of “W.T.F?” was exactly how I felt. Kelly, you are my new hero!

Other people have written about how great it is to get together with other Type 1s, other people who really “get it”. I can’t agree more. If I had been home, I would have been in the throwing things and swearing stage. Instead, we were laughing, hugging… and still swearing. Let’s face it, diabetes is pretty damn frustrating sometimes. And that’s why it was so great to spend a day with the people who “get it” – with the bloggers I am always surreptitiously reading from work: Amy, Bernard, Scott, Allison, Gina, LeeAnn, Kelly, Karen – and anybody else I forgot. Thanks guys, for turning a crappy BG day into such a great time!

Oh, and that high?

After a day with no fewer than nine correction boluses, doubled basal rates, and a 3am site change by the light of my dex did nothing it finally faded away - of its own accord - around 9 the following morning. W. T. F.?!?

Monday, April 14, 2008

Oh, for crying out loud!

Even though there is another blog post I’ve been meaning to write for weeks.. um, months … now, in honor of Raise Your Voice Day, I figured this one would be more appropriate. I’m not going to do a “type one 101” session, as you can find many good examples here at Kerri’s blog. And, in previous posts I’ve covered my diagnosis, a 24 hour log of life with diabetes, and a short humorous summary of the impact of this disease. So for today, I will instead write about being a Type 1 in a world trying to cut Type 2 costs – fun with health care chronic illness “support”. My snide comments on the Q&A will be in italics, their questions in bold.

My new health care plan at work has this wonderful (this word should be dripping with sarcasm by the way) perk for people with chronic illness: your own personalized version of the “diabetes police”. Just what every diabetic needs – a “friend” to call you up and chat about your diet (don’t have one) your weight (doing fine, thank you) and remind you to test your blood sugar (I’m pretty compulsive about this - as my Number Three Son has observed “Just like the dog leaves black hair everywhere, Mommy sheds those little test strips”).

A few years ago I had inadvertently been signed up for one of these and hated it. The first call wasn’t too bad. Do you know what a hemoglobin a1C test is? Yes, I had one last week. Every three months, in fact. Do you know it’s important to keep your a1C below 6.0? Actually, given the huge fluctuations in my BG, like dropping 150 points in an hour for no reason, trying to get my a1c below 6.0 would probably kill me. I already have to treat two 50s a day to keep myself in the sevens. How often do you test your blood sugar? Ten times a day. [dead silence on the phone]. Then: “Oh. Keep up the good work then.”

From there on in, the calls got more annoying. Next was the 6pm call on Halloween. Yeah, sure, maybe it’s a tough day for diabetics, but it’s not like I’m sitting here contemplating eating the whole bag of Almond Joys. I’ve got three kids to get into costumes, a dog having a nervous breakdown (she’s scared of flapping robes but loves barking at the door) and I live in a development where my doorbell is guaranteed to ring no less than 150 times tonight. I do not want to discuss the exchange diet with someone who tells me if I don’t control my weight I could wind up on insulin.

After the second call, I started just saying “If you really cared about improving my health you would pay for my continuous monitoring system.” When the next year’s health care flavor showed up, I made sure they did not sign me up. I don’t return the messages left by various perky sounding people, offering to tell me of an exciting new benefit free with my healthcare plan. I considered issuing the callers a test to see if they even know there is a chance they could be talking to a person with type one. You know, “can you explain the significance of a positive GAD64 antibody test?”….but then I decided that took too much energy.

Last week at work, we were told that if we completed an online health survey, we would get a few bucks taken off the cost of next year’s health care plan. OK, so it wasn’t much money, but I figure they are at least trying to do something good, so I should play along. Even though I knew what I would be in for.

To start off, I resolved to be as honest as possible with the thing. Honesty is the best policy, right? I did fine with the gender, age, height, weight, non-smoker, non-drug-abuser, teeth-brusher, exerciser, seatbelt-wearer, single-partner, occasional-drinker questions.

The general state of my health? Well, excellent is out. Good, I guess. With one glaring exception. I smile a bit, remembering my favorite great-aunt saying "For the shape I’m in, I’m healthy."

Have I missed more than one day of work in the past month due to illness? Well, considering I had strep throat and a 102 fever the week before, spent two days home asleep… Yes. Yes I have.

Have I ever been told by a doctor that I had diabetes or pre-diabetes? Um. Yeah. How long ago? Within the past 5 years.

Have I seen a doctor since that time? What are you smoking? Yes. (duh!)

Has my doctor ever told me my blood sugar was high? Is a bear Catholic? Does the pope shit in the woods?

Have I tested my blood sugar in the past three weeks? Yes. They only ask yes or no, so I can’t put “over 200 times”.

What was it? Excuse me? My choices are “80-110”, “120-140”, “150-180”, or “above 200”. No “All of the above”? No “below 40”? No “above 400” (thank you, strep throat!) I decide in the interest of honesty here to go with my most recent reading. “120-140”.

OK, I am now booted out of the information collection stage and into the “diabetes for idiots” stage. I’ll try and reproduce the gist of the canned messages here, cleverly tailored with personal data from the collection stage inserted in so I know they really care…

Diabetes can be controlled through diet and exercise. Hooray! I’m throwing out my pump! You indicated that you exercise 5 times a week. You should exercise at least 3 times a week for 30 minutes. I should cut down? Exercise doesn’t have to be tough. Try starting with a brisk walk for 15 minutes and work your way up.

Maintaining a healthy weight is important also. Your BMI is 21. An ideal BMI is 19-24, so yours is in range. Dieting is an effective way to control your weight. Don’t get discouraged if you don’t see results immediately. Remember that controlling portion size is important to losing weight.

Your fasting blood sugar was 120-140, which is above the ideal range of 80-100. It’s also not a fasting BG, you morons, it was dead-on after lunch! You never asked for a fasting reading. Elevated fasting blood sugar can lead to crippling complications. Yes, I know that. This may be a good time to speak with your doctor about changing your medication to something that may more effectively control your diabetes. Yeah, fine. I’ll tell him I want to stop insulin and switch to something more effective. Should give him a good laugh.

Controlling your blood sugar is easy with proper diet, exercise, and regular doctor visits. Obviously written by a person without diabetes, any acquaintances with diabetes, or any knowledge of diabetes – of any type. Contact your doctor for more information and help and directions on how to manage this illness. Oh, yeah, maybe I should call every time my BG is out of range… Remember, it’s all up to you. And that is the exact kind of blame-the-victim bullshit that makes ANY TYPE of diabetes so hard to live with. It is NOT just up to me. But now I’m going to be haunted by those perky phone idiots who call during supper to ask what I weigh. I just know it.

The final page of the survey asked if we had ever been the victim of a medical error. And for once instead of a multiple choice we could actually write in 250 chars to explain. So of course I put in that my medical error was being misdiagnosed as a type 2 diabetic when I was type 1 and would die without insulin. I’m hoping if my answers get spit out to their telephone police, maybe they’ll actually glance at that and decide not to call.

If not, I’m compiling my own list of questions. Maybe I’ll ask my personal policeman what they weigh and how often they exercise. If they test their blood sugar at least eight times a day. If they have tested their basal rates recently. How many abstracts they have read on PubMed. If they have noticed different insulin sensitivity at different times of the day. If they re-evaluate their insulin to carb ratios periodically..........

Friday, January 18, 2008

The low-over

My numbers have been wacky lately. I mean seriously wacky, not just diabetes-wacky. For the longest time, lunch has been my most stable meal. I eat my usual lunch, do a 3-mile walk, and my BG does one of two things: either climbs to 260 or so and drifts gently down to 110 by 3pm, or dips first, meaning an occasional juice on my walk, then climbs to about 180 before back down by 4. I can live with that. That’s about as close as I get to being predictable.

But lately, things have been weird. I always knew if I skipped my walk, I need to add another 0-1.8 units (your guess as good as mine). Lately, even doing that, with or without the walk I hit 300 and stay there. Plus, missing lunch (which I don’t do too often) meant my BG goes up to 350 by 1pm. So, I decided it was time to do some midday basal testing.

Skipping breakfast has never been a big deal, except that as Mr Thyroid finally dies off I find it really tough to miss that a.m. coffee – actually cappuccino (make it myself 4oz milk, 2 oz espresso with our little electric cappuccio maker – best $40 I ever spent). So I decide I will just have my cappuccino at 6:30, then around 10:30 I should be in range to start a lunchtime basal check. I still pack a lunch figuring I’ll eat it around 3pm.

Wake up at 80, look real good overnight, like between 70-120. I’ve been level overnight for two months. Have my drink, bolus the usual amount and head off to work. Waiting for the traffic light two intersections from my office, my Dex’s high alarm goes off, saying I’ve passed 180. This happens almost every morning at the exact same spot, regardless of how long between having breakfast and actually going out the door.

Ten-thirty rolls around, and I check my BG in preparation to starting the basal test. 390. O-kaay, no lunchtime basal checking for me. Plus, thanks to my body’s completely backwards wiring, I am ravenously hungry anyway. Eat my lunch, bolus and correct. BG stays steady a bit, then drops, then back up….basically for the entire rest of the day I’m between 200-250.

At ten pm I’m around 190 and drifting down very gently. I decide not to do any corrections and just fix things tomorrow morning. But, I’m not sleepy yet so I spent forty minutes or so working on my “The Times’ Fiendish Sudoku” book I picked up in London.

After a while, making no progress on my current puzzle, I decide to turn off the light and go to sleep. But, let me just check first and see how out of range I really am. Thirty-one. WTF? Did I do a correction and forget about it? And where the hell are my juice boxes – my bedroom stash is empty.

I go downstairs, pour myself a glass of milk, and chug it. And interrupt my husband’s piano practice to tell him I’m low. I should be using something quicker, but I don’t have my little green juicy-juice boxes and stubbornly wont consider those darn sidewalk chalk glucose tablets. After about 5 minutes, I have a second glass of milk. And one of my homemade molasses cookies. So I don’t go low again. Then, because they’re tasty, I have another. And another.

OK, I’ve just gobbled down like 50 g of carbs. Now I’m tired. My husband comes up and reads to me, to make sure I’m going up before going back to sleep. It takes an hour for me to break 60. At this point I assure my husband that I’m most likely headed for 400 but that I really just want to sleep now and I’ll fix it tomorrow.

The alarm goes off. I hit the snooze, grab the meter, and test. 74. WTF x 2??? I pull Dex from under the pillow. According to him, I never went above 100 all night. Unhook pump, shower, get ready for work, sit down for breakfast, retest. 78. Hmm. Have a real breakfast – toast and cappucino. Low alarm goes off. Hang out for half an hour until fingerstick shows my bg hitting 78 again, then go in to work.

At work, I feel like I am completely wrapped in blankets. Muscles ache, brain hurts, and I bumble through the day, feeling as though I’ve switched brains with the dog. At least, maybe the dog could make more sense of the code I’m supposed to be working on today.

At lunchtime I’m 94. I eat, bolus lightly, and take a walk, hoping to clear my head. Nope. All I can think about is going back to bed, lying down, and sleeping.

Somehow I make it through the day – with a juice box at 3:30 as I dip down to 64 – and head home. Bed. Bed. Bed.

I call Number One Son over, explain to him what needs to get done for dinner, and go upstairs. Bed. Bed. Bed. I check my BG – 96 – and fall asleep instantly.

45 minutes later, my husband wakes me up for dinner. I feel about one thousand percent better. I can keep my eyes open. I go down to eat, do a fingerstick. 46. Hoo, boy.

By the time dinner is over (juice, wait for BG to come up, dinner + extra 35g carbs so I don’t dip again) I am back wrapped in my metaphorical blanket, too dull to think of anything. I stand up. “I’m going back to bed.” It’s barely eight. BG 220.

Dex beeps at 1am. I’m 46 and drink juice (bedside stash has been restocked). Back to sleep, wake up at 90, go to work. Once again, high all afternoon and evening. I do no corrections, only bolus for the carb contents of meals. 224 at 11pm. Ignore it and go to sleep – last bolus 5:15.

I wake in the middle of the night, drenched with sweat and shivvering like mad. Check Dex; he says “LOW”. It’s 3:30, and I’ve been LOW for an hour. Flip to the 3 hour screen and see that BG went into free fall about 1am. I must have slapped the “below 90” and “below 55” alarms in my sleep. Wonderful. I feel much, much worse than the 31 two days ago. I know I should wake my husband, but all I can think of is that he’ll turn on the light, and I don’t want the light on. Poke straw into juice box in the dark, slurp, toss, roll over, sleep.
When the alarm goes off this morning I’m 46. Great. Another juice. Wait. Shower. Get ready. No way am I driving in to work this morning. I feel like I’ve been beaten with sticks, then taken a few turns in one of those witch dunker things, into ice water. I’m achy and tired and miserable and not able to think.

I try to log in from home, but after about 90 minutes of bumbling around in the code, doing things like spending fifteen minutes trying to figure out where I can find the script that updates the version info file, giving up and emailing a co-worker to ask where to look for it, then getting the sudden brainstorm that maybe the code is inside the file named “update_version_info.bat”. That sort of thing. A menace to myself and any poor sucker stuck working on the same code base. And my brain is running through the same loop, over and over : “I’m tired. I’m cold. I want to lay down. I don’t like these lights. I’m tired…”

I check out Dex's nine hour graph and see a perfect "W" 220 - LOW - 55 (after 3am juice) - LOW - 220.

I give up, email my boss that I’m sick, and go upstairs, proceeding to lie in bed for two hours with my brain going “I’m bored. I’m cold. This bed isn’t comfortable. Too much light….”

At least it’s Friday.