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 13, 2005
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.
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.
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.
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.
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