May 31, 2005

Charlotte vs. the Bionic Bagel

Well, last week I ran out of time to write about the Evil Matron Glaring who subsequently became Egregiously Mollifed & Gentle--this would be the tech, of course, who performed my EMG and whose behavior during same has contributed to my DUH w/r/t nerve damage. She was quite mean to me at the onset of the exam (I was late and that was NOT okay) but became startingly kind and friendly by the end, without apparent cause. A number of rational, non-DUH-stricken folks have pointed out logical explanations for this shift that have nothing at all to do with the tech having discovered, as I fear she did, that something Extremely Morbid & Grim is occurring within my nervous system. She probably, for example, realized she had behaved inappropriately toward me and figured she'd better compensate in case I decided to complain. Or, even more likely, she was initially upset that I had put her off schedule but calmed down as the test proceeded smoothly and she regained her lost time.

Okay. Sure. Makes sense. I'll keep trying to buy into that.

Meanwhile, the reason I ran out of time last week is that I was getting ready to visit Mr. Brooklyn, hooray. Am now here. I have yet to learn how to behave as well as I should with my eating when I'm in New York. There are many more temptations than I typically encounter during my staid culinary life in Minneapolis. At home, for example, my main stress over carbohydrates is deciding whether I should microwave Amy's Tamale Pie for 27 grams (minus 5 g fiber) or Amy's Shepherd's Pie for 27 grams (minus 4 g fiber). Here it's more like: should I eat delicious but inappropriate restaurant foods for breakfast, lunch, dinner, or all three?

Consider, for example, that quintessential New York pleasure, the bagel. I never believed until I ate one myself that it's true what they say: the bagels here are beyond compare. (Mr. Brooklyn theorizes that there's some magical ingredient in NYC water that makes the difference.) Alas, bagels are especially cruel to the diabetic system. Made of highly refined flour, they hit the BG aggressively. Yet no human I've met can resist consuming them with generous amounts of cream cheese, a fat that slows down digetive processes and results in a sort of double whammy: you get nailed right away AND later, sometimes much later, by the refined carbs.

One of the fine things about modern insulin pumps is they come equipped with tools for addressing problems like these. You can spread out part or all of your insulin over an hour or two or three, for example, to try to cover foods that bite you back later. This requires experimentation, as it's an individualized process. It is my mission to make productive use of my vacation time by deriving a formula for healthful (ahem) bagel consumption.

Mr. Brooklyn buys his bagels at an appropriately named shop called Bionic Bagels. What better opponent for Charlotte's sophisticated gadgetry? Already three encounters have taken place. The first ended in clear victory for the enemy: 2 hours post-bagel 176, 3 hours post-bagel 246, argh. Undaunted, Charlotte and I sent for reinforcements and renewed the attack. We have since gained considerable ground: 2 hours 138, quite respectable, 3 hours 179. The current battle plan is to weigh the bagel, compute insulin, add half a unit, take 60% with bagel and 40% over the next hour. Our strategy for the next engagement is to spread out the 40% over a longer span of time.

My friends, we shall prevail, and the rewards will be great.

May 26, 2005

Ever More Grist...

…as Sandra terms it in her comment below. Speaking of which, thank you all for the support. It means an awful lot to me.

The short, not-at-all-witty story of the EMG is that it was ouchie, though not unbearable, and will produce no definitive results (grrr) until next week.

The long story is, well, naturally longer. If time permits, it will appear here soon. It may or may not be witty, but it WILL involve acronyms...

May 25, 2005

Metablogging & bargaining

One of the gifts I've found in blogging is that it provides a coping mechanism for my medical experiences not just before and after the event, but during it as well. This is the strategy I will carry with me this afternoon to my EMG, about which I am just a smidge nervous (ahem). Much of the time, I may imagine or pretend that my story is one of courageous self care in the face of chronic illness. Nah. It's really all about gathering material for Pumplandia, see? While I'm being poked and zapped I'll think about creative analogies and, hopefully, Violetish witticisms to capture the moment. If the medical personnel are eccentric, no matter! They will soon become characters in tonight's post, relegating them to a manageable and much more entertaining status. It's all good.

Really, it is.

That said, if the cosmos is listening, I'd be willing to blog instead about TV or literature or video games or amateur psychology or my cats. I'm open to a variety of assignments, in fact. So you can take the diabetes back; I promise to keep writing. I promise!

May 23, 2005

Pumplandia the Beautiful

An ode to Charlotte on our 100-day pumpiversary

(Well, I’m a few days early, but who’s counting?)

O beautiful for fewer lows
and not-quite-so-high highs,
for purple cyborg gadgetry,
no needles to despise!

Pumplandia! Pumplandia!
Beep beep beep beep beep beep!
I analyze
then customize
for safety while I sleep!

O beautiful for basal rates
preset by the hour,
for boluses pumped right to me
with painless battery power!

Pumplandia! Pumplandia!
Beep beep beep beep beep beep!
Infusion sets
are my best bet
for a lower A1C!

O beautiful for sleeping late
and snacking between meals,
for your adaptability--
how sweet and free it feels!

Pumplandia! Pumplandia!
Beep beep beep beep beep beep!
Bionic life
of lesser strife—
‘tis the life for me!

May 21, 2005

Clarity evades

Have just received and attempted to decipher lab report on blood work. Please join me in gentle laughter as I proclaim: I do not have the big C.


Cool, my strategy worked. And I’m not blushing at all. Really, I’m not.

I am also pleased to announce the health of my thyroid, probably the only part of my body I wasn’t worried about.

But here is something curious. My B12 level has received a rating I can only describe as “normalish, but please continue to fret.” The normal range is 200-1100 pg/mL (what’s a pg? picogram? piggygrunt?) and I am at 322. Good good. But. There is a prominent message beneath:


In other words, I may yet be a few piggygrunts short of a full litter.

Pricklies and numbness are in the category here referred to as “NEUROPSYCHIATRIC.” (This does not imply that they’re only in my head, but that they’re neurological in nature. Psychiatric symptoms of B12 deficiency include mild depression and memory loss. Oh, don’t get me started…)

So I can’t be sure whether the Ps & N are due to diabetes or B12 deficiency (or some as yet unworried-about cause). If the B12 is the problem but is not caused by celiac, it should be correctable by—you’ll never guess—


Oh, the irony.

Nevertheless I think I want to be among that anomalous 5-10%. I would much rather have to reacquaint myself with syringes than face a diabetes complication already. Maybe the EMR will provide helpful information, and maybe Dr. Keeper can suggest further testing. Until then I’ll go back to waiting. And maybe have a sandwich too. With extra bread.

May 20, 2005

In which I wait

The doctor was lovely: respectful, good listener, gentle. A keeper. Woo hoo.

So: blood work being done for a few things, including the big C. I will receive a letter if all is well and a phone call if all is not. I wait.

Meanwhile, she is more attuned than I was to this neuropathy business. I just want to be able to keep eating wheat bread and oatmeal. She actually wants to find out what's wrong with me. Go figure.

So: next Wednesday I will have a pokey, ouchie (or, if you prefer, pokie, ouchey) test on hands and feet. An EMG. This is to assess whether there is nerve damage, and if so, what can be learned about it. Perhaps in conjunction with the blood work this will solve the mystery.

Meanwhile, I wait. And observe a thing I hadn't before, namely that at night the tips of my toes seem to go a bit numb. I can still feel the sensation of my fingers making contact, but in an oddly distanced way. From the point of view of my fingers--err, not view, my fingers have not grown eyes, at least not YET--it feels like I am touching someone else's toes rather than my own. Or that they are slightly dead. Egads.

If this is from diabetes, I am just a freak. You don't wind up this way with 2.5 years of poor control, which is about the span when I might have been diabetic and not known it. Have been wracking my brain to try to remember when the Big Weight Loss began. Maybe it was 2001, not 2002. Even so. 3.5 years of poor control? Still not enough time. Dr. Patronize, my endo, said 5 years. The ADA says 10-20 years, average, for neuropathy to start.

Hmm. Deep breath. This is not constructive. Time will tell, maybe, what's going on.

Meanwhile, I wait.

May 17, 2005

In which I seek my free gift

For me, self care has become a tightrope walk between two distinct points. One, it goes without saying, is diabetes. The other I've affectionately named DUH. That, for readers less subject than I am to neurosis, diabetes, or both, stands for Diabetes. Ugh. Hypochondria.

This disease has such a generous (ahem) variety of complications covering such a diverse (blah) array of organs and systems that I find it impossible not to analyze my body’s every minor palpitation in that context. This new habit can certainly comprise an important aspect of stellar self care. You can be vigilant about your health or you can risk missing things you need to know. Cyberpal Kerri, a hero of mine who firmly occupies the vigilant category, has made a recent diabetes-related discovery that’s sending her on a journey through purgatory. But the ultimate truth—not that this is fair, just, or a Good Thing—is that she’s empowered by her newfound knowledge to take action. Yeah, it’s purgatory to know, but not knowing damns you to hell.

That said, the other side of the coin of vigilance is, well, DUH. Recently I found myself beset by a horrible itching. Not only wouldn’t it go away, it spread. I saw some little bumps too. Aha, I thought. I know that diabetes can cause a variety of skin troubles. Some of them are chronic and extremely tormenting. I nervously sounded the alarm at Pins and Needles, where several wise and helpful folks offered a variety of suggestions for me to consider as I tried to figure out what kind of doctor to see.

One of the questions I was asked was whether I had recently changed detergent or perfume. I could, after all, be experiencing contact dermatitis.

Oh. Well. Actually. Yes. Yes, I had changed shampoos a couple of weeks before. I had forgotten that.

Back I changed to the old shampoo. Problem solved. Sometimes, as cyberpal Scott observed on this very blog, an itch is just an itch, a headache is just a headache, and diabetes is just diabetes. DUH.

Then again. (This post, you see, is shaped just like diabetes itself: back and forth, up and down, switcheroo, pulled-a-fast-one-on-ya, betcha-didn’t-see-that-coming!) I feel like a fool at times, but no one can dispute that the diabeastie has horns and claws and warts of all kinds. Among them, as cyberpal Amy explains, is its tendency to come bearing free gifts no one wants. Type 1 frequently coexists with other autoimmune diseases, there being a genetic link among many of these. The one I am worried about right now is celiac, a condition with which Amy is unfortunately very familiar. People with celiac can’t tolerate gluten, a protein found in most grains and a great many processed foods. It tears up the intestine, making one subject to vitamin deficiency, osteoporosis, and stomach cancer. The cure is to stop eating gluten. For good.

I am setting myself up, you see. If I expose my hypochondria here in embarrassing detail, it pretty much ensures that when I visit the doctor I will find that all is well. Then I will have to come back here and say DUH. We can all laugh gently at my poor tormented mind, and life will go on.

Celiac occurs much more often in type 1 diabetics than in the general population. It can present with no symptoms at all, or with a variety of GI symptoms. (Have had a healthy number of these the past few weeks. Could just be stress. Probably stress. Yeah, stress.) Fatigue and weakness are common. (Check. Especially the last couple weeks.) Another sign is evidence of nutrient malabsorption—for example, bone problems or peripheral neuropathy.

Ah. Well. Yes. My bones are sound, as far as I know (but just give me some time to think about it). I do have a funny nerve thing that comes and goes. It’s like being poked with a pin in my feet and hands. Mostly in the evening. This type of neuropathy is, of course, a common complication of diabetes. Back when it began in November, my endo explained (rather dismissively, thus giving me my first DUH moment and coming very close to sending me on a search for a new endo) that neuropathy doesn’t develop in diabetics until at least the 5-year mark. And even if you allow for the years (!) in which I might have been undiagnosed, I’m around 3 years tops. The endo suggested that the problem would go away by itself, and if not, I should get tested for vitamin B12 deficiency.

Well, it did go away for a long time. Now it’s back.

Vitamin deficiency, huh? GI symptoms, fatigue. Hmm. Okay, I'm in. Time to humble myself before a new doctor. Maybe she will smile kindly at me and say, "DUH, Violet. DUH."

May 13, 2005

How I got here, part 3

I was unprepared to be hospitalized. I had nothing with me but my purse and coat. I wasn’t even wearing clean clothes. And who would feed my cats? Worse still, who, upon feeding my cats, would witness the condition in which I had left my apartment? Even on good days I’m, um, somewhat messy. And I had barely been functioning for weeks.

The fact that I was able to think of these things at all meant—to my very good fortune, especially considering how long I had ignored my symptoms—that I wasn’t on the verge of a diabetic coma or other disaster. 395, I learned later, is not a typical hospitalization kinda number. But Dr. Ketones hadn’t seen a lot of 395s in newly presenting diabetics, and she wasn’t taking any chances.

Snide commentary aside, I do credit this doctor with ensuring that I entered a controlled environment in which I was well educated, in a newbie sort of way, on the basics of diabetes self care. Still, it was an alarming SIX HOURS after my arrival at the hospital—four days and nine hours after my diagnosis—before I was finally offered my first injection of insulin. Why rush over a teeny tiny 395, I guess…

I gave myself that first shot in the belly after a nurse showed me how to draw insulin from the vial. Five units of Regular, it was. Along with the rest of humanity, I don’t care much for injections. But I wanted that one very, very much. I felt a difference within hours, the tentative return of something resembling not quite strength, but a bit of energy.

The petty indignities of a hospital stay were, I decided, the compromise I would make in exchange for those shots. Okay, this wasn’t so much a decision as a rationalization, considering that I had no choice in the matter unless I wanted to leave without that little glass vial. Nurses, I found, are—like all collectives of humans—a mixed bunch. The best was the one who showed me how to chart my urine output (!) so that I didn’t have to ring for assistance every single time I used the bathroom. The worst was the singsongy, oh-so cheerful one who MADE ME GUESS what my blood glucose was the morning after I started taking insulin. She stood above the bed and hovered, smiling, until I babbled something that may have sounded like a string of numerals. Then she said, “How does 140 sound?” I suppose she thought this was a chipper, uplifting way to deliver medical information to a disempowered patient. Bitch.

Once I’d had some insulin, the thing I most wanted to know was whether I had type 1 or type 2. If it was type 1, I knew I’d be on insulin forever; type 2 might have more flexibility. But the doctors couldn’t agree about my diabetes. The length of time I’d experienced symptoms, as well as my age and the lack of full-blown DKA, pointed toward type 2. But my physical profile (skinniness etc.) pointed toward type 1. Finally, blood work showed that my pancreas had gone on permanent strike. Type 1.

Along the way, I was almost put on Lipitor because my cholesterol was through the roof. The internist who prescribed it told me that the combination of diabetes and high cholesterol meant I was a great candidate for cardiac failure. Oh, good. Later, an endocrinologist came by, and I asked him if the untreated diabetes might be causing elevated cholesterol. Certainly, he said. So could I try to get the diabetes under control before taking the dramatic step of starting on a statin? Why yes, yes I could. Good thing I wasn’t taking a nap when he stopped into my room, I guess.

The very best thing about being in the hospital was that my people came to the rescue. My friends brought me books and magazines. (The most appropriately creepy thing to read while learning to give yourself injections, I found, is a brilliant children’s book called Coraline by Neil Gaiman. Things just aren’t right in that book, which is exactly how I felt.) My mom came all the way from Arizona to help me adjust to my new life. Yeah, she was the one who fed the cats and washed my stacks of neglected dishes. Mr. Brooklyn called constantly. And his mom, whom I’d met only twice, called too to give me a pep talk.

Other skills I acquired during my hospital stay included learning to walk while attached to an IV, the ability to tune out the constant moaning sounds made by my poor roommate, who was plagued with an unfortunate respiratory ailment, and, of course, how to check my own blood glucose so as not to have to rely on singsongy nurses for this information. I muddled through. They let me out on the third day with a pile of prescriptions, a rudimentary lesson in carb counting, and a fixed scale for insulin since I didn’t know my ratios yet. With my mom at my side, I wandered off into a brave new world of syringes, test strips, and Humalog.

And that's what got me here.

May 9, 2005

How I got here, part 2

The day I got my diagnosis was a Thursday. Had I received it from a doctor familiar with adult-onset type 1, I would have likely been advised to get treatment immediately, in case I was heading for a serious crisis. This doctor, however, was a gynecologist who also does well-woman care for healthy patients. I respected her then and still do now; it was hardly her fault that I'd come to her with a serious health problem. But as she told me herself, she wasn’t intimately familiar with diabetes. She probably pegged me as a type 2 because I was 32 years old and my fasting BG, while clearly diabetic, was nowhere near an emergency number. Type 2 ain’t no picnic, but in its early stages it’s unlikely to put people in the hospital. So instead of rushing me into treatment, she referred me to a physician in the same clinic with, she said, more diabetes experience. The new doctor, it turned out, couldn’t see me until Monday.

I spent the weekend reading everything I could find about diabetes, obsessing about the grim future that I believed awaited me, cutting back on carbs, and feeling ever more nauseated. I read enough to learn that I might indeed have type 1, and that if I did I might be in danger of a life-threatening condition called DKA. But as long as I wasn’t throwing up or exhaling breath that smelled like Juicy Fruit, I probably didn’t have it yet. (Whee, good news!) Still, I came to feel a deep conviction that whatever type I had, I desperately needed insulin as soon as possible. This was my first real lesson in listening to my body. Now all I wanted was for the doctor to take me seriously on Monday.

It didn’t start out that way. When she came into the examining room, she didn’t know why I was there, not yet having looked at my file or, apparently, spoken with the intake nurse (who also hadn’t known why I was there, again not having looked at my file). I explained the results of the blood test. I described all my symptoms, the horrible thirst, the growing nausea, the weight loss. She said she would have some blood work done. I asked about testing for ketones. The books I had read over the weekend said that evaluation of a newly diagnosed diabetic should always include a check for this poison, a byproduct of the body’s attempts to convert fat into energy, which occurs in the absence of insulin. Ketones are what lead to DKA.

Not necessary, the doctor said, adding that in the early stages of type 2 ketone production is highly unlikely. I pointed out the reasons that I might have type 1 and mentioned the nausea again. She shrugged me off. I’m ashamed to say that I was too ill and exhausted to protest further. Okay, I thought, whatever, just give me the insulin. Please.

Then I donated my blood and waited, a long long time, for the results. At least they didn’t send me home; I sat in a succession of hard plastic chairs in various waiting areas. Then they put me in another examining room, where I slumped against a countertop.

Finally, the doctor came in. “I don’t think I can let you go home today,” she said. Not go home? I made, I think, a confused babbling sound. “Your blood glucose is 395,” she continued, “and you have large ketones.” Guess she changed her mind about running that test. Ahem.

She went on to explain that I might have type 1 after all. I would need to go to a hospital, or to a diabetes center if they could find one that would take me, so that I could be placed on an immediate regimen of insulin.

Aha. NOW I was being taken seriously.

May 8, 2005

How I got here, part 1

Several bloggers have recently shared their diagnosis stories. Maybe it sounds strange to say that I’ve enjoyed these, but I have. They are what got us here, after all, and it’s important to tell them and to have them heard. To quote William Bridges as he quotes The Gospel of Thomas (in his incredibly wonderful book The Way of Transition, which I need to reread): “If you call forth that which is in you, it will save you. If you do not call forth what is in you, it will destroy you.”

So here, in honor of my preference for saving myself vs. destruction, is my story.

I had three symptoms of diabetes for a long, long time. This is a strange experience for a type 1, according to conventional wisdom. Type 1 tends to hit fast and furious, putting the recipient in need of emergency care within weeks if it isn’t diagnosed. Quite a large percentage of the medical personnel I’ve talked with aren’t aware that recent research has identified that in some adults, type 1 has a gradual onset that progresses over a period of months or even years. My diabetes probably falls into that category.

I started dropping weight, without dieting, sometime in 2002. I am 5’5” and weighed close to 130 pounds at the time. I worried about the mysterious vanishing of fat but decided that it was a symptom of depression. My dad had died not long before, and it seemed to me that my body was expressing its grief. It didn’t matter what I ate, I still slowly lost a pound or so a month. In a freaky, eating-disorder kinda way, I came to enjoy this oddity. And I didn’t go to a doctor to ask why this was happening to me.

I was seeing plenty of medical types, however, about my other problem, recurrent yeast. Ack. Talk about misery. Eventually, heavy doses of the right antibiotic got rid of it—but I had to stay on the medication religiously or it came right back. It wasn’t really gone; it was just held at bay by a constant influx of meds.

Then I got really, really hungry. All the time, this gnawing fierce need to eat. I’ve always loved food and always needed to eat at rather regular intervals to feel well. But this—well, this was something else. In the morning, at six, I had peanut butter toast and a huge bowl of yogurt. By the time I got to work at eight, I was hungry again, so I had a big bowl of bran cereal with a banana. (Gosh, I miss that.) At eleven I had lunch, followed by a giant cookie or a scone. At two I had a bag of popcorn or a candy bar. Sometimes I had another treat before supper at six. At seven I started the evening snacks. If it was salty and crunchy, I’d eat it. Oh, and I had soda, the regular kind, mixed with some kind of alcohol just about every evening. Easily 3,000 calories a day or more.

But I was still losing weight. Something was obviously very wrong, but I wasn’t used to listening to my body. I looked the other way with the determination that I now try to channel toward taking care of myself.

Then I got thirsty. You know the thirst if you’ve felt it, and if you haven’t, I hope you never will. It's a beast. I remember visiting my boyfriend—this was April 2004—and drinking my glass of water at dinner, then drinking his, then filling them both and drinking them again. And again. At his mom’s house I hid in the bathroom and drank from the faucet because I was embarrassed by how much water I kept asking for. At home, I learned the location of every fountain in downtown Minneapolis—and planned my lunchtime shopping trips based on the availability of water. I bought two gallons of orange juice a week (shudder) plus a gallon and a half of milk. I was never, ever not thirsty unless there was a liquid in my throat. It goes without saying that I spent a great deal of time in the bathroom—because, I thought, I was drinking so much liquid. I didn’t yet know that it was actually the other way around: I was so thirsty because I had to urinate constantly because my body needed to get rid of the excess of glucose in my blood.

My mom saw me that August and told me I needed to go to a doctor. I knew she was right. By the time I managed, in October, to overcome my fright and get myself there, I was in trouble. I had no recollection of what it felt like to have energy, even though I’d added a 10 a.m. power bar to the day’s food supply. I couldn’t climb stairs without losing my breath. Low-grade nausea had become a constant companion.

I was at work on the third day after my blood test, unable to stand the stress of waiting any longer for the results. I put in a call to the doctor’s office. She called back just 10 minutes later. The good news was that my thyroid was fine. The bad news was that my fasting blood glucose was 281. “That means diabetes,” she said. And directed me to another doctor who would be better able to help me.

What do you do with a piece of life-changing information like that? What does anyone do? I have fuzzy memories of calling my boyfriend, calling my mother, my boss walking into my office while I was crying on the phone. And I have a crystal-clear memory of the conviction that my life would never be the same, a conviction that hasn’t abated since.

May 6, 2005

In which I run very late to work

This morning I dragged myself out of bed at 5:30 as usual, but for the life of me I could NOT stay awake. I couldn’t begin to conceive of the notion of fixing breakfast, which (along with other opportunities to eat) is normally one of the highlights of my day. I fed the cats, wandered over to the sofa, and dozed off for another hour. When I woke up, I had an annoying headache. I tested. 83.

Hmm. Most of the time when I’m awake, I get symptoms of hypoglycemia at 83. Shakes, sweats, overwhelming hunger, that sort of thing. Of course, meters aren’t perfect, and maybe I was really closer to 90. In any case, all I felt was tired and headachy.

Another strange thing about this 83 is that I can’t remember ever waking up that low. On good mornings I’m at 110-125. Lately, during the April of Unmotivation, I woke up higher that than fairly often.

Sometimes waking with a headache means you went low while you were sleeping. So I’m wondering if I spent part of the night in Hypolandia. Ack. From the descriptions I’ve read, that is nowhere near as lovely a place as Pumplandia.

My CDE (certified diabetes educator) knows I’ve worried about nighttime lows ever since I had one during my first week on insulin. (It wasn’t that bad, but it did scare the bejeebers out of me.) My protocol for bedtime is to test and have a small snack if I’m below 120. The snack sees me through the night without trouble, and I usually wake up around 120ish, an acceptable number for me.

Last night, I was 124 at bedtime, which is awfully close to Snackville. But I wasn’t hungry (for once in my life) so I didn’t eat. Maybe I should have.

I think I need to do some during-the-night testing for the next few nights that I don’t have a snack. Maybe I need to raise the snacking threshold to 130.

Do I need to mention that I am not at peace with the idea of descending into a coma in my sleep? No, I didn’t think so.

May 4, 2005

Safety and self-worth

Recently this blog has received some anonymous commentary that gives me pause because it reinforces—not merely empathizes with—anxieties I’ve expressed here about body image. I hate to be unaffirming, as such remarks are quite possibly the genuine writings of people in need of support, and I want this blog to be all about support. But I will not be engaging in dialogue with anonymous posters whose contributions aren’t constructive in some way.

The anonymous comment quoted below falls into a different category. It bears discussion because this writer and anyone who follows her practice IS PUTTING HER LIFE AT RISK:

“Everytime I get in a new realtionship I am so terriofied of exposing my pump. I end up ripping out my infusion set and sacraficing my health. Total self image thing. It is a love/hate relationship with the pump.”

No, no, no. Please do not do this. This is a recipe for DKA, which any person with diabetes should know CAN AND DOES KILL. If you remove your infusion set, have sex with someone who doesn’t even know you depend on a medical device for your very life, and then doze off, you could find yourself 6 hours later in need of emergency medical treatment. And unable to get it because you’re exhausted and ill (or already in a coma) and the person lying next to you has no idea you're even diabetic.

This practice is not only dangerous, it’s entirely unnecessary. You can safely disconnect for a romantic day/weekend/whatever if you return to a regimen of injections that includes basal insulin. (I infer that this poster does not do so because she refers to jeopardizing her health.) This regimen could be in the form of Lantus + short-acting insulin, or multiple shots of short-acting insulin. The key is to work with your diabetes team to determine such a regimen.

All my very heartfelt concerns about intimacy and body image notwithstanding, I would never, ever, ever place myself at risk by compromising my diabetes care in the way this poster describes. Indeed, if you’re engaging in intimacy with a person you don’t know well enough to trust with the sight and experience of your pump, you’re placing your life at risk in another way—by becoming physically vulnerable to an essentially unknown partner. And we all deserve better self care than that.

In which I am my own guinea pig

Small adventure yesterday: I am eating lunch at work. Cheese sammich, V8 juice, apple. I have dutifully counted, tested, administered bolus. I am a good diabetic, yes I am.

Charlotte, without warning, makes her crankiest beeping sound.

Hello, NO DELIVERY. I remember you . This time the bolus has stopped after 3.8 out of 4.9 units.

I disconnect and study the tubing. Hmm. Looks fine. I see no bubbles or kinks or breaks. Is something wrong with Charlotte? To find out, I dangle the tubing over the wastebasket and do a manual prime. Straight away, my favorite liquid (ahem) drips out.

So. Charlotte is working fine. Must be the infusion set. Boo.

Up goes the “please do not disturb” sign. I thank the gods of work, yet again, for granting me an office with a solid door.

Remove reservoir, rewind, fill new reservoir. Knock the damn bubbles to the top, squirt bubbles back into vial, fill again. Insert reservoir. Prime. Ponder abdomen. Load new infusion set into serter thingie. Ponder abdomen again. Swab. Push buttons. Ow. Manual prime to fill cannula.

I’m getting to be a professional bionic.

Okay, up and running again. Now to remove the old set. Ow. I don’t have baby oil with me to loosen the adhesive. Ow. Stupid sticky stuff. I settle for an alcohol swab.

To my surprise, the old cannula looks just fine. I thought it would be bent or kinked or something that would cause the alarm. Apparently not. And there’s no pool of insulin above the site to suggest that the bolus didn’t make it down the cannula, either.

Hmm. A new dilemma faces me, and it’s far less appealing than the uneaten remains of my lunch. Do I redo the interrupted bolus or not?

A no delivery alarm means, in theory, that insulin delivery has (brilliant, I know) been interrupted at some point. The question is when. Charlotte decided that I wasn’t getting insulin at the 3.8 unit mark. But I might have gotten some up to that point, or all of it, or none of it.

I certainly need at least 1.1 units to finish up the bolus—unless I want to subtract food from my plate. Not an option. As for the rest, I have three options:

1. Assume I didn’t get the insulin and redo the bolus. Problem: if I got the bolus, or part of it, I will go low later. Possibly very low.

2. Assume I got the insulin and take only the 1.1 remaining units. Problem: if I didn’t get the bolus, I will go high later. Possibly very high.

3. Assume I got some portion of the bolus, roll dice to determine how much that portion might be, and take the rest. Problem: see #1 and #2 above. Plus I don’t have any dice at the office.

What would you have done? I picked the least life-threatening of these options, #2. One can always correct for a high later on, but a serious low could leave a diabetic beyond the point of caring, ever again, whether her latest A1C is up or down.

My experiment under way, I finished eating and went for a ferocious walk—which can itself cause lows, of course, but in this case I knew that if anything I was short on insulin. (NB: see, I did repeat the miracle, woo hoo!)

Three hours after the alarm, I tested at 120. Phew.

So why did I get the alarm if nothing was actually wrong? Fellow pumpers have suggested that maybe the tubing was squashed in a funny way under my clothes, or maybe it was a battery problem, or maybe Charlotte was trying to tell me that she wants one of those fancy pump pockets that all the girl pumps are raving about. Could be something else altogether.

Hmm, now where did I put my dice?

May 3, 2005

One foot in front of the other

I did it. I went for the walk. This seemingly minor act is all about something much bigger, as anyone who struggles with this stuff knows. It's about overcoming all those forces--exhaustion, entropy, athletic socks left behind at home, depression, stress, the sheer brutal longing to give oneself a break because nothing else in life is, goddamnit--and acknowledging: OK, today is no better day to exercise than yesterday was, but today the costs of not taking care of myself are too high.

Today I will try to repeat the miracle.

May 2, 2005

Crawling out from under a sugar-coated rock

Hello, I'm back. Or trying to be. This hasn't been my easiest month of the 6 (ooh, count 'em) since my dx. I've had a lot of stress from various sources, I quit exercising (bad Violet!), and I more or less withdrew from my online existence. Why is it that when bad stuff happens, I lose the energy I need to do the very things that would help me most? Exercise would help; talking & writing would help. Isolation, after the relief of the first couple of days of quietude, does NOT help me. I get lost out there in the big mean world. I succumb to the illusion that I'm on my own with my disease and the rest of my silly life. I see myself as outside the gatherings of like-minded souls, looking in but unable to connect.

That's a lot of self-destructive crap. I am no more alone than I choose to be. So...I'm going to try to write here, or elsewhere in the diabetes community, every day this week. And I'm going to try to walk today. Yes, yes. I can. Small slow walk. I can handle that. I will report back on the results of same. Please hold me accountable, guys.