I’ve been tagged by Scott, who is among the first type 1 folks I met in person following my diagnosis. He and the good people of our support group helped me through a very hard time and encouraged me in my exploration of Pumplandia. His blog inspired me to start this one, in fact. My 5 random facts:
1. My past pets include three retired racing greyhounds. These remarkable dogs are beautiful, awe-inspiring companions whose care and upkeep are considerably different than many folks imagine. (You don’t have to take them running, for example. And many are good with cats and children.) Check out Northern Lights Greyhound Adoption for more information about these hardworking athletes who deserve to retire to loving homes with big cushy dog beds.
2. I’m quite fascinated by the Myers-Briggs Type Indicator, a system that describes personality as the intersection of four brain functions. MBTI has given me a more profound understanding of my relationships as well as practical tips on how to work with people who function differently than I do and a new way of looking at stress. I’m an INFP, which means I am quiet, creative, and temperamental, among many other things. Here's an interesting page about MBTI: http://www.personalitypage.com/
3. Another, less scientifically validated system of personality is the Enneagram. There’s a lot of kooky writing out there about this way of looking at human psychology. But there’s also very rich material for people who are willing to examine what most frightens them and the ways we structure our lives around those fears. I am a Nine, highly conflict avoidant, which means (again among many other things) that I need to be vigilant about my fierce longing to dodge confrontation at all costs. A good Enneagram resource: http://www.enneagraminstitute.com/
4. My guilty television pleasure is Survivor. I know, I know. I am deeply ashamed.
5. My guilty lifestyle confession is that I don’t read for pleasure anymore. I read all day long for my job, and a lot of "free" time goes to my job as well. I can’t remember the last time I cracked open a book for the sheer pleasure of reading it rather than for work or health-related information. I never thought this could happen to me, a lifelong bookworm, and it is highly suggestive of the possibility that I need to rearrange my priorities.
I hereby tag the following:
Sandra
Dee
Aww, isn't that cute? They're a 1950s movie star!
December 29, 2005
December 23, 2005
Progression
Thanks to the many who commented & sent e-mails in response to the very practical survey. I'm grateful for all the help.
I'm observing the progression of my diabetes from a sometimes clinical and detached, sometimes hyperemotional (as you guys know) stance. Today's post shall tend toward the clinical and detached, Violet style.
When I started on the pump last February as a happy honeymooner (ahem), my basal rates were 0.25-0.30/hour all day long. Crazily small numbers for an adult, I know. But without those teeny droplets of insulin I'd go up and up.
I enjoyed six months of stability and numerical happiness, relatively speaking. In August, I began to need to raise the basals. They leveled off for a while, then needed another small bump in October. They're now on the move again. Tweak, tweak, tweak. Yet I'm still spending fully half of each day at 0.25. This is in contrast to the average post-honeymoon type 1. Check out Skytor's December 16 post about basal rates over at DIA...gonal, a newish blog Kerri highlighted recently.
Based on Skytor's supercool graph, I may still have a long way to go before I'm entirely done honeymooning. The average adult T1 has basal rates of roughly 0.6-1.0. Here's where I am (sorry, I'm not graph capable yet):
5 PM-5 AM 0.25
5:00 AM-6:30 AM 0.60
6:30 AM-9:00 AM 0.65
9:00 AM-10:00 AM 0.50
10:00 AM-3:00 PM 0.40
3:00 PM-5:00 PM 0.35
...for a grand total of 8.60 units per day of basal insulin.
The other new aspect of this period is a change in some of my carb ratios, which has never happened thus far other than changes caused by estrogen. I need more insulin with lunch and dinner than before--about 15% more at lunch and 10% more at dinner. Err, I think. I'm not getting consistent results yet (sometimes going low, sometimes still too high, sometimes just right), so this remains a work in progress.
It's not the numbers themselves that I'm fixated on, actually. My preoccupation is this: How long will the instability continue? Since everyone needs different amounts of insulin, it's impossible to know where I'll end up. I won't be able to tell until things level off and stay leveled, I guess. This unpredictability is so very...diabetesish, if you will. Mercurial. Ephemeral. Etc. Which makes it, really, just another face on a figure we all know well.
I'm observing the progression of my diabetes from a sometimes clinical and detached, sometimes hyperemotional (as you guys know) stance. Today's post shall tend toward the clinical and detached, Violet style.
When I started on the pump last February as a happy honeymooner (ahem), my basal rates were 0.25-0.30/hour all day long. Crazily small numbers for an adult, I know. But without those teeny droplets of insulin I'd go up and up.
I enjoyed six months of stability and numerical happiness, relatively speaking. In August, I began to need to raise the basals. They leveled off for a while, then needed another small bump in October. They're now on the move again. Tweak, tweak, tweak. Yet I'm still spending fully half of each day at 0.25. This is in contrast to the average post-honeymoon type 1. Check out Skytor's December 16 post about basal rates over at DIA...gonal, a newish blog Kerri highlighted recently.
Based on Skytor's supercool graph, I may still have a long way to go before I'm entirely done honeymooning. The average adult T1 has basal rates of roughly 0.6-1.0. Here's where I am (sorry, I'm not graph capable yet):
5 PM-5 AM 0.25
5:00 AM-6:30 AM 0.60
6:30 AM-9:00 AM 0.65
9:00 AM-10:00 AM 0.50
10:00 AM-3:00 PM 0.40
3:00 PM-5:00 PM 0.35
...for a grand total of 8.60 units per day of basal insulin.
The other new aspect of this period is a change in some of my carb ratios, which has never happened thus far other than changes caused by estrogen. I need more insulin with lunch and dinner than before--about 15% more at lunch and 10% more at dinner. Err, I think. I'm not getting consistent results yet (sometimes going low, sometimes still too high, sometimes just right), so this remains a work in progress.
It's not the numbers themselves that I'm fixated on, actually. My preoccupation is this: How long will the instability continue? Since everyone needs different amounts of insulin, it's impossible to know where I'll end up. I won't be able to tell until things level off and stay leveled, I guess. This unpredictability is so very...diabetesish, if you will. Mercurial. Ephemeral. Etc. Which makes it, really, just another face on a figure we all know well.
December 21, 2005
A very practical survey
Some hands-on, nuts-and-bolts inquiries for anyone who uses insulin or cares for someone who does. Feel free to answer only some questions if you prefer. (Some apply only to pumpers or their parents.) Also, I realize that these questions should be discussed with a CDE or endo, which I plan to do. But I’m most interested in the responses of people who are contending with these questions in everyday life.
1. When you disconnect your pump for ½ hour to 1 hour, e.g. for showering, do you adjust for the missed basal insulin? If so, how—by increasing the basal for the next hour? Or do you give yourself a bolus of the missed insulin? Or some other way?
2. What’s your favorite reference for carb counting? And/or what suggestions do you have for building on a basic carb counting education to improve accuracy, especially in a restaurant situation?
3. What are your guidelines for bedtime snacking? Do you always snack if below a certain BG? What’s the BG number, and what kind of snack do you eat? If you’re supposed to snack but aren’t hungry, do you snack anyway? Does anybody try lowering their nighttime basal in lieu of snacking?
4. If you drink alcohol, describe what you drink and your strategy for use of insulin & food to minimize BG chaos. For example, if your drink contains carbs, do you use your standard carb bolus or a reduced one?
5. If you are a woman who takes estrogen, do you see an effect on your insulin resistance? For example, I have different carb ratios (less insulin) for the week when my BC pill is a placebo, and this past month I’ve noted that I’m going to have start lowering my basals that week too.
6. Does your correction factor vary at different times of day? How can one figure this out, given the dozen or so variables at play? Surely I’m not supposed to cause myself to go high at 9 a.m., noon, 3 p.m. etc. on different days to test my correction ratio?
Thanks for your input, everyone!
1. When you disconnect your pump for ½ hour to 1 hour, e.g. for showering, do you adjust for the missed basal insulin? If so, how—by increasing the basal for the next hour? Or do you give yourself a bolus of the missed insulin? Or some other way?
2. What’s your favorite reference for carb counting? And/or what suggestions do you have for building on a basic carb counting education to improve accuracy, especially in a restaurant situation?
3. What are your guidelines for bedtime snacking? Do you always snack if below a certain BG? What’s the BG number, and what kind of snack do you eat? If you’re supposed to snack but aren’t hungry, do you snack anyway? Does anybody try lowering their nighttime basal in lieu of snacking?
4. If you drink alcohol, describe what you drink and your strategy for use of insulin & food to minimize BG chaos. For example, if your drink contains carbs, do you use your standard carb bolus or a reduced one?
5. If you are a woman who takes estrogen, do you see an effect on your insulin resistance? For example, I have different carb ratios (less insulin) for the week when my BC pill is a placebo, and this past month I’ve noted that I’m going to have start lowering my basals that week too.
6. Does your correction factor vary at different times of day? How can one figure this out, given the dozen or so variables at play? Surely I’m not supposed to cause myself to go high at 9 a.m., noon, 3 p.m. etc. on different days to test my correction ratio?
Thanks for your input, everyone!
December 16, 2005
DOH = doh!
Over at http://noncompliant.blogspot.com Kassie brings her incisive wit to bear on the NYC Department of Health, which is instituting a program requiring all labs in the city to report all A1C results with the name and contact information of the patient. The DOH’s fantasy is that it can monitor areas and individuals whose "control is poor" and intervene in a positive way, e.g. (I suppose) by sending us greeting cards with photographs of persons connected to dialysis machines as a friendly reminder. Oh, they’re going to call us too. Nice.
Privacy, shmivacy. The government has a huge financial interest in reducing diabetic complications, so they’re taking action based on their understanding of how those complications come about, Bill of Rights be damned. The data will supposedly not be available to insurance companies. Yet. And individual patients will supposedly be able to opt out of the program. I can just picture the feasibility scenario there:
HARRIED LAB WORKER: Must upload data to the DOH, must upload data, must upload data…
HARRIED LAB WORKER #2: Wait, this one is marked "Patient declines to participate. Do not send data."
HARRIED LAB WORKER: Too late.
HARRIED LAB WORKER #2: DOH!
What pisses me off the most is that, as Kassie, Shannon, and other commenters on Kassie’s post have pointed out, this is a really stupid way to expend resources. Anybody who is already going to the doctor to have their A1C done can be given improved education about self care at…um…yeah, the doctor’s office! From medical professionals of the patient’s own choosing! The people who already have access to the private information the city will now be collecting by force of law!
The city should take those funds and use them to ensure that doctors and nurses, especially at primary care practices (where a great many type 2 diabetics in particular get most of their medical care), receive continual updates on all facets of diabetes treatment and patient education.
Oh, wait. That wouldn’t cover the recalcitrant types who get their A1C now and then but not often enough. Yeah, I guess the city is right. A big draconian database is the only solution. It wouldn’t work, for example, to earmark funds for doctor’s offices to do their own follow-up with patients with diabetes. No, that would just be wrong.
Is the ostensible purpose of this program a screen for something else? I wonder how much a list of the name and contact information of every PWD in New York City would be worth to a pharmaceutical company, a health insurance provider (for prescreening applicants? or how about coverage based on how well you're "managing" your disease?), or even major employers who shoulder enormous burdens in health costs. Okay, so I’m straying into X-Files paranoia here. (Hey, that's it! Maybe it’s aliens who want a diabetes database!) But why not? When the government stomps on my privacy, I’m naturally going to wonder why. And I haven’t heard a good explanation yet.
Privacy, shmivacy. The government has a huge financial interest in reducing diabetic complications, so they’re taking action based on their understanding of how those complications come about, Bill of Rights be damned. The data will supposedly not be available to insurance companies. Yet. And individual patients will supposedly be able to opt out of the program. I can just picture the feasibility scenario there:
HARRIED LAB WORKER: Must upload data to the DOH, must upload data, must upload data…
HARRIED LAB WORKER #2: Wait, this one is marked "Patient declines to participate. Do not send data."
HARRIED LAB WORKER: Too late.
HARRIED LAB WORKER #2: DOH!
What pisses me off the most is that, as Kassie, Shannon, and other commenters on Kassie’s post have pointed out, this is a really stupid way to expend resources. Anybody who is already going to the doctor to have their A1C done can be given improved education about self care at…um…yeah, the doctor’s office! From medical professionals of the patient’s own choosing! The people who already have access to the private information the city will now be collecting by force of law!
The city should take those funds and use them to ensure that doctors and nurses, especially at primary care practices (where a great many type 2 diabetics in particular get most of their medical care), receive continual updates on all facets of diabetes treatment and patient education.
Oh, wait. That wouldn’t cover the recalcitrant types who get their A1C now and then but not often enough. Yeah, I guess the city is right. A big draconian database is the only solution. It wouldn’t work, for example, to earmark funds for doctor’s offices to do their own follow-up with patients with diabetes. No, that would just be wrong.
Is the ostensible purpose of this program a screen for something else? I wonder how much a list of the name and contact information of every PWD in New York City would be worth to a pharmaceutical company, a health insurance provider (for prescreening applicants? or how about coverage based on how well you're "managing" your disease?), or even major employers who shoulder enormous burdens in health costs. Okay, so I’m straying into X-Files paranoia here. (Hey, that's it! Maybe it’s aliens who want a diabetes database!) But why not? When the government stomps on my privacy, I’m naturally going to wonder why. And I haven’t heard a good explanation yet.
Wonder if she heard the slurping
3:00 p.m.: 320. Retested, changed set (it was time anyway), took Nellie’s suggested correction.
4:30: 56. In middle of telephone meeting with boss. Drank juice box while talking around the straw about strategy for editorial staffing. Trembled. Ran out of juice. Perspired profusely. Drank Mr. Brooklyn’s coke.
4:45: 127. Wished boss a merry Christmas.
New theory: correction ratio changes during 4th week of BC pill pack (the placebo week, the ones nobody actually bothers to take). This could make sense. All my carb ratios change then too because my insulin resistance plummets when I’m not swallowing estrogen every day. If the correction ratio moves from, say, 1:80 to 1:120 (sheesh), that would account for swinging 264 points in 1.5 freaking hours. (Note to self: evaluate birth control options. This ain’t worth it.)
Why didn’t I terminate the phone meeting until I knew I was okay? I’m afraid to have diabetes interfere with my work. The boss is supportive, but she doesn’t understand the disease well, and I don’t want her to think I’m gonna get clobbered by hypos in the middle of important meetings at random intervals. Which, obviously, can happen. Had I been 56 and unable to reach carbs, I would of course have hung up the phone. Cordless saved me.
Then again, it’s not really a bad idea to be in touch with another human when you’re low. Errr, even if that person has no idea it’s happening? Violet, tired and cranky, does not know.
4:30: 56. In middle of telephone meeting with boss. Drank juice box while talking around the straw about strategy for editorial staffing. Trembled. Ran out of juice. Perspired profusely. Drank Mr. Brooklyn’s coke.
4:45: 127. Wished boss a merry Christmas.
New theory: correction ratio changes during 4th week of BC pill pack (the placebo week, the ones nobody actually bothers to take). This could make sense. All my carb ratios change then too because my insulin resistance plummets when I’m not swallowing estrogen every day. If the correction ratio moves from, say, 1:80 to 1:120 (sheesh), that would account for swinging 264 points in 1.5 freaking hours. (Note to self: evaluate birth control options. This ain’t worth it.)
Why didn’t I terminate the phone meeting until I knew I was okay? I’m afraid to have diabetes interfere with my work. The boss is supportive, but she doesn’t understand the disease well, and I don’t want her to think I’m gonna get clobbered by hypos in the middle of important meetings at random intervals. Which, obviously, can happen. Had I been 56 and unable to reach carbs, I would of course have hung up the phone. Cordless saved me.
Then again, it’s not really a bad idea to be in touch with another human when you’re low. Errr, even if that person has no idea it’s happening? Violet, tired and cranky, does not know.
December 6, 2005
Patterns
I want them. I need them. I rely on them to take care of my diabetes.
If it’s 2 p.m., I need X insulin per hour to hold me steady. I take Y units per gram of carbohydrate I consume. At 3:00, everything will change, but that’s okay because Nellie and I know the pattern. We will change too. We are self-informed, resilient, yet flexible. We are in control.
Reread the last paragraph in the past tense.
The patterns of Violet are askew. My body has, it seems, unpatterned itself.
All that basal testing described a few posts below is only helpful if you can find a trend. If the results shift and change, you can’t adjust. Give yourself more insulin, and the next day you might not need it. We all know what happens then.
Right now, for example, nighttime is crazy. One night I get a great 2-hour test after dinner, say 140, then find myself at 240 when bedtime comes (nope, no fat with the meal, but thanks for asking). The next night I fast to see if the basals are too low. They must be, right? No. At least not this time. I’m at 87 when bedtime comes, and I have to have a snack. Hmm.
Another night, like tonight, the 2-hour test is pushing 250 and I’m sick to my stomach. Why? I knew exactly what I was eating, gram for gram. Okay, it must be that my carb ratio is too low. But wait: last night I knew what I was eating too. And I was fine. Tomorrow the only thing I can guarantee is that the result will be yet another iteration: they’re infinite, it seems.
Without patterns I am at sea. I know myself but not how to take care of myself. And that is even more disorienting than moving from Minnesota to Brooklyn.
If it’s 2 p.m., I need X insulin per hour to hold me steady. I take Y units per gram of carbohydrate I consume. At 3:00, everything will change, but that’s okay because Nellie and I know the pattern. We will change too. We are self-informed, resilient, yet flexible. We are in control.
Reread the last paragraph in the past tense.
The patterns of Violet are askew. My body has, it seems, unpatterned itself.
All that basal testing described a few posts below is only helpful if you can find a trend. If the results shift and change, you can’t adjust. Give yourself more insulin, and the next day you might not need it. We all know what happens then.
Right now, for example, nighttime is crazy. One night I get a great 2-hour test after dinner, say 140, then find myself at 240 when bedtime comes (nope, no fat with the meal, but thanks for asking). The next night I fast to see if the basals are too low. They must be, right? No. At least not this time. I’m at 87 when bedtime comes, and I have to have a snack. Hmm.
Another night, like tonight, the 2-hour test is pushing 250 and I’m sick to my stomach. Why? I knew exactly what I was eating, gram for gram. Okay, it must be that my carb ratio is too low. But wait: last night I knew what I was eating too. And I was fine. Tomorrow the only thing I can guarantee is that the result will be yet another iteration: they’re infinite, it seems.
Without patterns I am at sea. I know myself but not how to take care of myself. And that is even more disorienting than moving from Minnesota to Brooklyn.
November 30, 2005
Incidents with Animegirl
One:
I am taking Mr. Brooklyn’s daughter, 14-year-old Animegirl*, to the Metropolitan Museum of Art one Sunday. (Mr. Brooklyn's son, Gamerboy, has decided to stay home with Dad for purposes related to his namesake.)
We begin with breakfast at a neighborhood diner. There are four diners within walking distance of the apartment I share with Mr. Brooklyn and, on weekends, his kids. Four we’ve found so far, that is. I’m pretty sure there are others. One of the wonders of the neighborhood.
Animegirl is in a lively mood considering the hour. We discuss various matters teenage as we board the F train to Manhattan. She has an interesting perspective on many things.
A few minutes into the ride I’m startled to feel That Feeling.
Bad. We just ate. If I am low now, it’s probably a nasty one.
I pull out my meter and poke a fingertip as the train bumps along. Animegirl has seen this many times, but we’ve always been with her dad and brother before. Today she has a question.
“Do you have scars on your fingers from doing that?”
“Not really,” I say, showing my hands. “Well, sort of. I get little dots where the blood vessels break sometimes.” Animegirl squints at my fingers. The dots are too small for her to see at this distance.
Meanwhile, my meter has done its job. 67, not a good number for a person with several units of insulin on board.
Grrr, I think. Lousy way to start the day. Stupid diabetes. Well, whatever. I’ll just eat a zillion glucose tablets and I’ll be fine.
I reach into my purse. Immediately I know. There’s a tube-shaped void in the compartment where the tablets normally sit. They’re in your other bag. Idiot.
This has happened before--rarely--but never when I’ve had a serious low. I always carry carbs with me. Always. Well: practically always.
I am on a moving train with a hypo coming on and no food.
“Do you have any candy? Anything to eat at all?” I ask Animegirl with deliberate calm. It seems very important not to freak her out. I don’t want to ruin the day. And she might not want to go places with me if this kind of shit appears to be the result.
She has no food either. I explain that we’ll have to get off the train because my blood sugar is low and I need something to eat. She asks some questions: how does it get too low? What happens if I don’t eat? I answer in what may or may not be intelligible English sentences.
I’m not familiar with the next stop--we’re still in Brooklyn but no longer in the small section I know--but surely there’s a store nearby. This is New York. There’s one of everything near the subway. But this station turns out to be deserted, tomblike, no stores in sight. Only some warehousey structure, maybe a school, in front of us when we emerge from underground. No people at all.
I select a random direction and start walking. Feeling shakier. Within half a block I see a newsstand. Phew. I heart New York.
I choose orange juice; Animegirl gets a strawberry Hershey bar. We return to the train. I retest as it rolls away. 78. The right direction.
“You deal with it well,” Animegirl says.
I feel like I’ve won a medal. “Thanks,” I tell her.
“I don’t think I could do it.”
“Actually,” I answer, “you could. You would adapt just like I have.”
She ponders this for a moment, then nods.
For the next few hours, she periodically offers me a piece of Hershey bar. But I don’t go low again, the art museum is astounding, and we have a wonderful time. Wonderful.
Two:
Animegirl is sick this weekend. She has a lousy cold and menstrual cramps.
I offer cold remedies, Tylenol, Advil. She declines. “I never take anything when I’m sick,” she states in a lofty tone of the sort one might use to announce an ethical stance on, say, the death penalty. “I don’t believe in medicine.”
I have, as you might imagine, a few small observations to offer in response to this. But I bite my tongue. She spoke as she did because she isn’t thinking of me as a person with a chronic disease, which on the whole is very much a Good Thing. And she’s sick. And I adore her. Cut the kid some slack, I instruct myself.
But I can’t. I stew quietly about her words. She’s entitled, of course, to take care of herself (or not) as she wishes. And I can appreciate the desire to thwart our cultural tendency toward overmedication. It’s also a good thing that she’s an active thinker, something of a nonconformist, a young person busily engaged in the work of figuring out who she is. I admire and (frankly) envy her these qualities.
Flip side: To be able to scorn medicine is a luxury that only a person privileged with near-perfect health can indulge--unless one is willing to suffer serious physical decline, which, cold and cramps notwithstanding, Animegirl is not currently at risk of doing. Both her stance and the slight smugness that accompanies it are enabled by good fortune, a good fortune I once had but now lack. Another thing I envy her.
Flip flip side: What’s my role in Animegirl’s life and growth as a young human being? I’m Dad’s live-in girlfriend, not her mother or teacher or counselor. Do I help her develop empathy for the less fortunate (in this case, me)? Am I entitled to decide what empathy might mean for her or whether she needs more of it? Why? Maybe she’s fine the way she is, and I’m simply pissed off because I’m diabetic and I just turned 34 to boot. (Stupid mid-thirties with no baby in the near future. Bah.)
Flip flip flip (it’s a pyramid, you see): Does a person with a chronic illness have an obligation to raise the awareness of others? Can I just be Dad’s girlfriend, or do I also have to be Dad’s girlfriend who has diabetes? If the latter, do I have to be that person all the time or do I get a break now and then? Why should I be stuck with that burden? Or am I just grousing about the burden of being an adult in relation to a child, the burden of trying to help a younger person mature and develop wisdom? Maybe that's it; it's a very new situation for me.
The next morning, Animegirl sneezes vociferously as we walk to breakfast. Deep thinking be damned. I pounce on the opportunity.
“Sure you don’t want something for your cold?”
She shakes her head no.
“You know,” I say, “if I refused to take medicine, I’d be dead by now. Literally dead. So I take insulin.”
She pauses. And ponders. And sees my (unsubtle, ungraceful, and somewhat self-indulgent) point.
“Stick with that,” she says finally. And sniffles.
*anime: Japanese-style animated series and movies
I am taking Mr. Brooklyn’s daughter, 14-year-old Animegirl*, to the Metropolitan Museum of Art one Sunday. (Mr. Brooklyn's son, Gamerboy, has decided to stay home with Dad for purposes related to his namesake.)
We begin with breakfast at a neighborhood diner. There are four diners within walking distance of the apartment I share with Mr. Brooklyn and, on weekends, his kids. Four we’ve found so far, that is. I’m pretty sure there are others. One of the wonders of the neighborhood.
Animegirl is in a lively mood considering the hour. We discuss various matters teenage as we board the F train to Manhattan. She has an interesting perspective on many things.
A few minutes into the ride I’m startled to feel That Feeling.
Bad. We just ate. If I am low now, it’s probably a nasty one.
I pull out my meter and poke a fingertip as the train bumps along. Animegirl has seen this many times, but we’ve always been with her dad and brother before. Today she has a question.
“Do you have scars on your fingers from doing that?”
“Not really,” I say, showing my hands. “Well, sort of. I get little dots where the blood vessels break sometimes.” Animegirl squints at my fingers. The dots are too small for her to see at this distance.
Meanwhile, my meter has done its job. 67, not a good number for a person with several units of insulin on board.
Grrr, I think. Lousy way to start the day. Stupid diabetes. Well, whatever. I’ll just eat a zillion glucose tablets and I’ll be fine.
I reach into my purse. Immediately I know. There’s a tube-shaped void in the compartment where the tablets normally sit. They’re in your other bag. Idiot.
This has happened before--rarely--but never when I’ve had a serious low. I always carry carbs with me. Always. Well: practically always.
I am on a moving train with a hypo coming on and no food.
“Do you have any candy? Anything to eat at all?” I ask Animegirl with deliberate calm. It seems very important not to freak her out. I don’t want to ruin the day. And she might not want to go places with me if this kind of shit appears to be the result.
She has no food either. I explain that we’ll have to get off the train because my blood sugar is low and I need something to eat. She asks some questions: how does it get too low? What happens if I don’t eat? I answer in what may or may not be intelligible English sentences.
I’m not familiar with the next stop--we’re still in Brooklyn but no longer in the small section I know--but surely there’s a store nearby. This is New York. There’s one of everything near the subway. But this station turns out to be deserted, tomblike, no stores in sight. Only some warehousey structure, maybe a school, in front of us when we emerge from underground. No people at all.
I select a random direction and start walking. Feeling shakier. Within half a block I see a newsstand. Phew. I heart New York.
I choose orange juice; Animegirl gets a strawberry Hershey bar. We return to the train. I retest as it rolls away. 78. The right direction.
“You deal with it well,” Animegirl says.
I feel like I’ve won a medal. “Thanks,” I tell her.
“I don’t think I could do it.”
“Actually,” I answer, “you could. You would adapt just like I have.”
She ponders this for a moment, then nods.
For the next few hours, she periodically offers me a piece of Hershey bar. But I don’t go low again, the art museum is astounding, and we have a wonderful time. Wonderful.
Two:
Animegirl is sick this weekend. She has a lousy cold and menstrual cramps.
I offer cold remedies, Tylenol, Advil. She declines. “I never take anything when I’m sick,” she states in a lofty tone of the sort one might use to announce an ethical stance on, say, the death penalty. “I don’t believe in medicine.”
I have, as you might imagine, a few small observations to offer in response to this. But I bite my tongue. She spoke as she did because she isn’t thinking of me as a person with a chronic disease, which on the whole is very much a Good Thing. And she’s sick. And I adore her. Cut the kid some slack, I instruct myself.
But I can’t. I stew quietly about her words. She’s entitled, of course, to take care of herself (or not) as she wishes. And I can appreciate the desire to thwart our cultural tendency toward overmedication. It’s also a good thing that she’s an active thinker, something of a nonconformist, a young person busily engaged in the work of figuring out who she is. I admire and (frankly) envy her these qualities.
Flip side: To be able to scorn medicine is a luxury that only a person privileged with near-perfect health can indulge--unless one is willing to suffer serious physical decline, which, cold and cramps notwithstanding, Animegirl is not currently at risk of doing. Both her stance and the slight smugness that accompanies it are enabled by good fortune, a good fortune I once had but now lack. Another thing I envy her.
Flip flip side: What’s my role in Animegirl’s life and growth as a young human being? I’m Dad’s live-in girlfriend, not her mother or teacher or counselor. Do I help her develop empathy for the less fortunate (in this case, me)? Am I entitled to decide what empathy might mean for her or whether she needs more of it? Why? Maybe she’s fine the way she is, and I’m simply pissed off because I’m diabetic and I just turned 34 to boot. (Stupid mid-thirties with no baby in the near future. Bah.)
Flip flip flip (it’s a pyramid, you see): Does a person with a chronic illness have an obligation to raise the awareness of others? Can I just be Dad’s girlfriend, or do I also have to be Dad’s girlfriend who has diabetes? If the latter, do I have to be that person all the time or do I get a break now and then? Why should I be stuck with that burden? Or am I just grousing about the burden of being an adult in relation to a child, the burden of trying to help a younger person mature and develop wisdom? Maybe that's it; it's a very new situation for me.
The next morning, Animegirl sneezes vociferously as we walk to breakfast. Deep thinking be damned. I pounce on the opportunity.
“Sure you don’t want something for your cold?”
She shakes her head no.
“You know,” I say, “if I refused to take medicine, I’d be dead by now. Literally dead. So I take insulin.”
She pauses. And ponders. And sees my (unsubtle, ungraceful, and somewhat self-indulgent) point.
“Stick with that,” she says finally. And sniffles.
*anime: Japanese-style animated series and movies
November 29, 2005
Why Nellie?
The last chapter of Charlotte’s Web finds Wilbur in a sad state. His beloved Charlotte has died. He has protected her egg sac and watched her babies hatch, only to see them sail away on balloons of spun silk. But three tiny spiders have stayed behind in the barn to remain with him. The first is called Joy, the second Aranea. As for the third:
“How about me?” asked the third spider. “Will you just pick out a nice sensible name for me--something not too long, not too fancy, and not too dumb?”
Wilbur thought hard.
“Nellie?” he suggested.
“Fine, I like that very much,” said the third spider. “You may call me Nellie.” She daintily fastened her orb line to the next spoke of the web.
Wilbur’s heart brimmed with happiness. He felt that he should make a short speech on this very important occasion.
“Joy! Aranea! Nellie!” he began. “Welcome to the barn cellar. You have chosen a hallowed doorway from which to string your webs. I think it is only fair to tell you that I was devoted to your mother. I owe my very life to her. She was brilliant, beautiful, and loyal to the end. To you, her daughters, I pledge my friendship, forever and ever.”
“I pledge mine,” said Joy.
“I do, too,” said Aranea.
“And so do I,” said Nellie, who had just managed to catch a small gnat.
[Yeah, I realize this extended metaphor places me squarely in the role of the pig. What can I say? Diabetes can do that kind of thing to a girl.]
“How about me?” asked the third spider. “Will you just pick out a nice sensible name for me--something not too long, not too fancy, and not too dumb?”
Wilbur thought hard.
“Nellie?” he suggested.
“Fine, I like that very much,” said the third spider. “You may call me Nellie.” She daintily fastened her orb line to the next spoke of the web.
Wilbur’s heart brimmed with happiness. He felt that he should make a short speech on this very important occasion.
“Joy! Aranea! Nellie!” he began. “Welcome to the barn cellar. You have chosen a hallowed doorway from which to string your webs. I think it is only fair to tell you that I was devoted to your mother. I owe my very life to her. She was brilliant, beautiful, and loyal to the end. To you, her daughters, I pledge my friendship, forever and ever.”
“I pledge mine,” said Joy.
“I do, too,” said Aranea.
“And so do I,” said Nellie, who had just managed to catch a small gnat.
[Yeah, I realize this extended metaphor places me squarely in the role of the pig. What can I say? Diabetes can do that kind of thing to a girl.]
We interrupt this broadcast...
[Cue dramatic music. Flash obnoxious 24-hour news station logo.]
Announcer:
This is a special report.
[Flash logo: a wilted purple flower almost entirely smothered under a pile of white sugar]
Announcer:
Violet's Honeymoon: The Final Hours?
Ladies and gentlemen, when we last left Violet, she was happily scarfing oatmeal after a lengthy fast. Oatmeal is one of Violet's favorite foods. It has a low glycemic index and high fiber content. It's always been easy on her diabetes. And it makes her feel warm and squishy inside.
Violet had used approximately 10 blood glucose test strips already today, but there's no stopping this spunky patient when she gets going. Two hours after her meal, she faithfully tested again, confident that she would find herself between 120 and 160.
[Cue dramatic music: DUM DA DUM!!!]
[Close-up on BG meter with numbers reading: 346]
Announcer:
Three hundred forty-six! Clearly a testing error. Violet tried again.
[Cue dramatic music: DUM DA DUM DUM!!!!!]
[C/U on meter with numbers reading: 367]
Announcer:
Three hundred sixty-seven! What could this mean? A forgotten bolus? No, Violet's pump indicated the oatmeal bolus had gone through without trouble.
A bubble in the pump tubing? No, Violet checked for bubbles when she began her fasting test. And she'd only used a few units of insulin since then.
A bad set? No, the current set had been working fine since Saturday evening.
An old set? Not really: Violet always goes 3 full days with her sets without running high.
Old insulin? On the contrary, a brand-new bottle.
Miscounted carbs? Upon recount, Violet could not find an error.
Ladies and gentlemen, please remain calm and stay near your television. It is possible that Violet's honeymoon has taken a dramatic turn for the worse. We will continue to update you as more information becomes available.
This has been a special report on...
[Cue mournful music, show logo]
Violet's Honeymoon: The Final Hours?
Announcer:
This is a special report.
[Flash logo: a wilted purple flower almost entirely smothered under a pile of white sugar]
Announcer:
Violet's Honeymoon: The Final Hours?
Ladies and gentlemen, when we last left Violet, she was happily scarfing oatmeal after a lengthy fast. Oatmeal is one of Violet's favorite foods. It has a low glycemic index and high fiber content. It's always been easy on her diabetes. And it makes her feel warm and squishy inside.
Violet had used approximately 10 blood glucose test strips already today, but there's no stopping this spunky patient when she gets going. Two hours after her meal, she faithfully tested again, confident that she would find herself between 120 and 160.
[Cue dramatic music: DUM DA DUM!!!]
[Close-up on BG meter with numbers reading: 346]
Announcer:
Three hundred forty-six! Clearly a testing error. Violet tried again.
[Cue dramatic music: DUM DA DUM DUM!!!!!]
[C/U on meter with numbers reading: 367]
Announcer:
Three hundred sixty-seven! What could this mean? A forgotten bolus? No, Violet's pump indicated the oatmeal bolus had gone through without trouble.
A bubble in the pump tubing? No, Violet checked for bubbles when she began her fasting test. And she'd only used a few units of insulin since then.
A bad set? No, the current set had been working fine since Saturday evening.
An old set? Not really: Violet always goes 3 full days with her sets without running high.
Old insulin? On the contrary, a brand-new bottle.
Miscounted carbs? Upon recount, Violet could not find an error.
Ladies and gentlemen, please remain calm and stay near your television. It is possible that Violet's honeymoon has taken a dramatic turn for the worse. We will continue to update you as more information becomes available.
This has been a special report on...
[Cue mournful music, show logo]
Violet's Honeymoon: The Final Hours?
Numbers
Results of fasting tests:
7:15 130
8:45 152
9:45 180
10:45 161
11:45 180
12:45 163
1:45 164 (broke down and ate enormous bowl of oatmeal)
Analysis:
1. Why didn't I do the tests on the hour so they match the way Nellie's clock works for basal delivery? Gooberhead.
2. I seem to be scaling up between 7:15 and 9:45, then more or less leveling off.
3. On the other hand, you could look at 7:15-1:45 and observe a 34-point shift, not that much overall. I'm too anal to settle for that, though. I was at 180! 180 is not a happy number! (Of course, meters vary so much that who knows what my BG ever really is...)
4. Back to #2 then. For simplicity, let's say I'm rising between 7 and 10 a.m.
5. It takes 2 hours for a basal change to take effect. So I need to bump my basal between 5 and 8 a.m.
6. Actually, what I really need to do is repeat the whole process one more time to be sure today wasn't an aberration. But I've watched the BG drift upward for a week (though I wasn't fasting) and therefore feel pretty confident about making a small change.
7. Small changes are safest. So I'll try increasing .05 units per hour during this span. I'll tell Nellie to bump me to .60 units per hour. A new record basal rate for Violet, woo hoo!
7:15 130
8:45 152
9:45 180
10:45 161
11:45 180
12:45 163
1:45 164 (broke down and ate enormous bowl of oatmeal)
Analysis:
1. Why didn't I do the tests on the hour so they match the way Nellie's clock works for basal delivery? Gooberhead.
2. I seem to be scaling up between 7:15 and 9:45, then more or less leveling off.
3. On the other hand, you could look at 7:15-1:45 and observe a 34-point shift, not that much overall. I'm too anal to settle for that, though. I was at 180! 180 is not a happy number! (Of course, meters vary so much that who knows what my BG ever really is...)
4. Back to #2 then. For simplicity, let's say I'm rising between 7 and 10 a.m.
5. It takes 2 hours for a basal change to take effect. So I need to bump my basal between 5 and 8 a.m.
6. Actually, what I really need to do is repeat the whole process one more time to be sure today wasn't an aberration. But I've watched the BG drift upward for a week (though I wasn't fasting) and therefore feel pretty confident about making a small change.
7. Small changes are safest. So I'll try increasing .05 units per hour during this span. I'll tell Nellie to bump me to .60 units per hour. A new record basal rate for Violet, woo hoo!
And so it goes
How did your honeymoon end?
Mine’s dying off “not with a bang but a whimper,” to appropriate a phrase from an expatriate (that's an edit: sorry, Mr. Eliot) poet unable to defend himself from such abuse (because he's dead, not because he was an expatriate...)
It’s an interesting process from an observational point of view. About 3 months ago--very shortly after my last post here at the beginning of August--I noticed a weird pattern. My morning and post-breakfast numbers were fine, but the BG never finished coming down after breakfast. So at lunch the number would be about the same as the post-breakfast number or sometimes a bit higher. This despite past success with the same foods eaten at the same time, etc., so I decided it couldn’t be the effects of fat or other diabetes bugaboos.
Then the same thing started to happen after lunch.
After enough repeats of this pattern convinced me it probably wasn’t merely stress (which I had in fair amounts at the time and which can certainly affect BG), I started fasting during selected periods to test my basal rates. A tricky business: you have to be sure you start the fast with no residual carbs on board and no extra insulin on board. Then you test, test, test. If your pump (or Lantus or whatever) is giving you sufficient basal insulin, your number shouldn’t move more than 40 points during the test period.
Aha. All those fingersticks showed I was climbing throughout the day. Dr. Patronize, my endo (whom I now rather sorely miss despite his deficiencies), had advised me to watch for this type of change. It signals the end of the honeymoon, the (ahem) blissful post-dx period during which one’s pancreas kicks out enough insulin to have an impact on the BG, albeit not necessarily enough to keep one out of the hospital.
There’s not a lot out there in the diabetes literature that details how honeymoons end. I wanted to know how fast the changes would take place, whether only my basals would change or my carb ratios as well, and what kind of basals I could expect to end up with. The only specific information I could find, though, is that honeymoons end differently for everybody, and at this point no one is sure why. Some people see a drastic skyrocketing in numbers all at once, others a more gradual creeping over time. Some have to adjust basals, some mealtime insulin as well. The point everyone agrees on is that control gets harder, a lot harder, after the honeymoon because the pancreas is Just Not Helping Anymore.
My numbers suggested that I am a creeper. No 400s yet, nothing drastic: 180 when I would have previously been 110, for example. Subtle but meaningful changes. An interesting thing to be grateful for, but there you have it.
The next step was a moment of glory for Pumplandia. Thanks to Nellie, I was able to adjust my basal rates in tiny increments to correct the problem without overcompensating and causing lows. It takes about 2 hours for a basal change to take effect on the BG (all this is from Smart Pumping, a most helpful ADA book by Dr. Howard Wolpert). So I identified the time of day when the numbers started to climb, subtracted 2 hours, and boosted my basal insulin for that hour. In my case, since I was climbing over a period of hours, I made adjustments over many hours.
Then I fasted a lot and tested a lot. Again. What mainly happened is that the numbers improved but not enough. So I kept adjusting. It took a couple of weeks to get it right, and I ended up with 6 basal rates over the course of 24 hours where I’d previously had two. For some parts of the day, my rate doubled, while for others the increase was less drastic, and for still others the rate stayed the same.
A strange business ensued. After these fixes, whenever I ran high and corrected as I previously would have done with happy results, I started going low. In other words, I now needed less insulin than before to fix my highs. I experimented further to find my new correction ratio. Although I can’t be sure why this would happen, I think it’s because the higher basal rate gives me more insulin on board, so I need less to fix a high. (This doesn’t entirely make sense to me, though. A mystery.)
I was stable for the next month or so. And then it happened again: high numbers at lunchtime despite a good post-breakfast reading. This time I didn’t have to tweak quite so drastically, just a bit more morning insulin.
And then I was stable for another month. Today I am fasting because it’s started again and I need to find out why.
Thoughts:
1. Beta cells, please stop dying. I need every one of you.
2. Part of my body is killing another part of my body. I would like this to stop. I have no control over what’s happening to me.
3. Wrong. Pumping gives me the most control I could possibly have. On shots, the best I could do would be to modify my daily Lantus, which can’t come close to rivaling the precision of Nellie.
4. How many times will I go through this before I get to where I’m going and can figure out how to handle full-blown type 1? What will happen then?
5. I’m really hungry. I have to work soon and it’s very hard to work when I’m hungry.
6. I feel like a freak.
7. I’m not a freak. I’m not the first, won’t be the last.
8. In accordance with the above, I would really like to hear the honeymoon-ending stories of the O.C. Share here or link back to your blogs. Thanks, guys.
Mine’s dying off “not with a bang but a whimper,” to appropriate a phrase from an expatriate (that's an edit: sorry, Mr. Eliot) poet unable to defend himself from such abuse (because he's dead, not because he was an expatriate...)
It’s an interesting process from an observational point of view. About 3 months ago--very shortly after my last post here at the beginning of August--I noticed a weird pattern. My morning and post-breakfast numbers were fine, but the BG never finished coming down after breakfast. So at lunch the number would be about the same as the post-breakfast number or sometimes a bit higher. This despite past success with the same foods eaten at the same time, etc., so I decided it couldn’t be the effects of fat or other diabetes bugaboos.
Then the same thing started to happen after lunch.
After enough repeats of this pattern convinced me it probably wasn’t merely stress (which I had in fair amounts at the time and which can certainly affect BG), I started fasting during selected periods to test my basal rates. A tricky business: you have to be sure you start the fast with no residual carbs on board and no extra insulin on board. Then you test, test, test. If your pump (or Lantus or whatever) is giving you sufficient basal insulin, your number shouldn’t move more than 40 points during the test period.
Aha. All those fingersticks showed I was climbing throughout the day. Dr. Patronize, my endo (whom I now rather sorely miss despite his deficiencies), had advised me to watch for this type of change. It signals the end of the honeymoon, the (ahem) blissful post-dx period during which one’s pancreas kicks out enough insulin to have an impact on the BG, albeit not necessarily enough to keep one out of the hospital.
There’s not a lot out there in the diabetes literature that details how honeymoons end. I wanted to know how fast the changes would take place, whether only my basals would change or my carb ratios as well, and what kind of basals I could expect to end up with. The only specific information I could find, though, is that honeymoons end differently for everybody, and at this point no one is sure why. Some people see a drastic skyrocketing in numbers all at once, others a more gradual creeping over time. Some have to adjust basals, some mealtime insulin as well. The point everyone agrees on is that control gets harder, a lot harder, after the honeymoon because the pancreas is Just Not Helping Anymore.
My numbers suggested that I am a creeper. No 400s yet, nothing drastic: 180 when I would have previously been 110, for example. Subtle but meaningful changes. An interesting thing to be grateful for, but there you have it.
The next step was a moment of glory for Pumplandia. Thanks to Nellie, I was able to adjust my basal rates in tiny increments to correct the problem without overcompensating and causing lows. It takes about 2 hours for a basal change to take effect on the BG (all this is from Smart Pumping, a most helpful ADA book by Dr. Howard Wolpert). So I identified the time of day when the numbers started to climb, subtracted 2 hours, and boosted my basal insulin for that hour. In my case, since I was climbing over a period of hours, I made adjustments over many hours.
Then I fasted a lot and tested a lot. Again. What mainly happened is that the numbers improved but not enough. So I kept adjusting. It took a couple of weeks to get it right, and I ended up with 6 basal rates over the course of 24 hours where I’d previously had two. For some parts of the day, my rate doubled, while for others the increase was less drastic, and for still others the rate stayed the same.
A strange business ensued. After these fixes, whenever I ran high and corrected as I previously would have done with happy results, I started going low. In other words, I now needed less insulin than before to fix my highs. I experimented further to find my new correction ratio. Although I can’t be sure why this would happen, I think it’s because the higher basal rate gives me more insulin on board, so I need less to fix a high. (This doesn’t entirely make sense to me, though. A mystery.)
I was stable for the next month or so. And then it happened again: high numbers at lunchtime despite a good post-breakfast reading. This time I didn’t have to tweak quite so drastically, just a bit more morning insulin.
And then I was stable for another month. Today I am fasting because it’s started again and I need to find out why.
Thoughts:
1. Beta cells, please stop dying. I need every one of you.
2. Part of my body is killing another part of my body. I would like this to stop. I have no control over what’s happening to me.
3. Wrong. Pumping gives me the most control I could possibly have. On shots, the best I could do would be to modify my daily Lantus, which can’t come close to rivaling the precision of Nellie.
4. How many times will I go through this before I get to where I’m going and can figure out how to handle full-blown type 1? What will happen then?
5. I’m really hungry. I have to work soon and it’s very hard to work when I’m hungry.
6. I feel like a freak.
7. I’m not a freak. I’m not the first, won’t be the last.
8. In accordance with the above, I would really like to hear the honeymoon-ending stories of the O.C. Share here or link back to your blogs. Thanks, guys.
November 28, 2005
How we been doin?
Hello again. I live in Brooklyn now. It’s difficult to know where to start:
The waning of the honeymoon?
The problematic kidneys-might-be-malfunctioning test that turned out to be a false alarm? (The repeat test was normal.)
The hideous first NY primary-care doc visit, endured in order to get my monthly B12 shot? (My mouth is still hanging open, and it’s been weeks since I saw this guy. Actual quotes, delivered after a 1-minute discussion of my diabetes: “You aren’t type 1; they just described it that way because you were insulin dependent at diagnosis. A common confusion. Do you really like that insulin pump? New Yorkers don’t generally use them. How many units a day does it give you? It depends on what you tell it to do? Hmm. So you really don’t mind having that in your stomach? No, you don’t need to see an endocrinologist. You can visit me three times a year and that will be fine.”)
The name of Charlotte’s successor? (Nellie.)
Every time I thought about writing here about any of the above (or any of the myriad other tiny golden diabetic moments of the last 3 months) I felt so freaking tired I wanted to cry. And fairly often did.
Sometimes it helps to write and to put my writing out into the world; sometimes it makes me feel more trapped than ever. How diabetic am I? Enough to write about it every day, every week? Every few weeks? Never again?
Well, all that sounds (a mite) darker than I actually intend. A gentler explanation for my withdrawal is simply that it’s been a preoccupying few months, pulling up roots from my old home and trying to take the first steps toward replanting them here. It’s a complex, exciting, stressful process, and I can’t say I’ve done the greatest job with regard to Things Diabetic. The self-care hasn’t been a disaster on the whole, particularly considering the honeymoon complexities, but my eating has gone to hell and I’m only now trying to start exercising a bit again. Etc. etc. We know the cycles well. I’m at the beginning of an upswing, I think/hope.
Okay. There’s my start. Meanwhile, I have a lot of blog reading to catch up on...More to come here when I seem to be feeling Just Diabetic Enough.
The waning of the honeymoon?
The problematic kidneys-might-be-malfunctioning test that turned out to be a false alarm? (The repeat test was normal.)
The hideous first NY primary-care doc visit, endured in order to get my monthly B12 shot? (My mouth is still hanging open, and it’s been weeks since I saw this guy. Actual quotes, delivered after a 1-minute discussion of my diabetes: “You aren’t type 1; they just described it that way because you were insulin dependent at diagnosis. A common confusion. Do you really like that insulin pump? New Yorkers don’t generally use them. How many units a day does it give you? It depends on what you tell it to do? Hmm. So you really don’t mind having that in your stomach? No, you don’t need to see an endocrinologist. You can visit me three times a year and that will be fine.”)
The name of Charlotte’s successor? (Nellie.)
Every time I thought about writing here about any of the above (or any of the myriad other tiny golden diabetic moments of the last 3 months) I felt so freaking tired I wanted to cry. And fairly often did.
Sometimes it helps to write and to put my writing out into the world; sometimes it makes me feel more trapped than ever. How diabetic am I? Enough to write about it every day, every week? Every few weeks? Never again?
Well, all that sounds (a mite) darker than I actually intend. A gentler explanation for my withdrawal is simply that it’s been a preoccupying few months, pulling up roots from my old home and trying to take the first steps toward replanting them here. It’s a complex, exciting, stressful process, and I can’t say I’ve done the greatest job with regard to Things Diabetic. The self-care hasn’t been a disaster on the whole, particularly considering the honeymoon complexities, but my eating has gone to hell and I’m only now trying to start exercising a bit again. Etc. etc. We know the cycles well. I’m at the beginning of an upswing, I think/hope.
Okay. There’s my start. Meanwhile, I have a lot of blog reading to catch up on...More to come here when I seem to be feeling Just Diabetic Enough.
August 3, 2005
The next thing
[continued from previous post]
Over the next few days I seesaw through lows and highs until I figure out the new score. Breakfast, which was 1:6, is now 1:9. Lunch has gone from 1:13 to 1:20. Dinner, 1:15 to 1:22. And my correction ratio, formerly 1 unit to lower the BG by 55, is now 1 unit for 80.
All of which will be moot when I return to the pill the following Sunday, but at least I’m back in control for the moment.
That Friday, I’m changing my set as usual. I go through the zillion and one steps until I’m ready to prime the tubing to fill it with insulin.
Charlotte beeps a lot at this point. She’s supposed to, to make sure I’ve remembered to disconnect the pump before I prime. If you prime while connected, you’ll infuse all sorts of unwanted insulin, a Very Bad Thing.
So she beeps as always. Good old Charlotte. But then, just before she starts the prime, she beeps very oddly. A strange sequence. And a strange message appears on her screen: A33.
I’ve never seen this before. I fetch the manual. Clear the alarm, it says, and if it continues to occur, call for assistance.
I clear the alarm. Charlotte’s screen goes completely blank, but restarts. Phew.
Funny, she wants to be rewound again. Okay. I rewind.
BEEP BEEP BEEP BEEP A33
I clear the alarm again. She restarts, asks to be rewound again, and alarms again. And again. She is stuck.
Charlotte?
I call Medtronic’s 800-number. I follow a push-button menu, expecting to be put on hold. I am not put on hold. A tech support guy answers, takes my name, and asks what my last blood glucose reading was.
Grrr. He wants to know if I’m having trouble with my pump because I’m running low & therefore confused. A reasonable, necessary, and patronizing question. “106,” I reply through gritted teeth. Then I describe the problem.
Mr. Medtronic Guy talks me through a diagnostic process that consists of doing exactly what I’d done before I called him. Charlotte remains steadfast in her refusal to leave the rewind cycle.
“Did you possibly drop the pump?” Mr. Medtronic Guy asks. “Or could it have gotten banged somehow?”
I assure him that this is not the case.
“I’m afraid we’ll have to send you a replacement pump,” he says.
I am shocked. Charlotte is dead? She is not even six months old. How could she be dead?
“It’s an internal communication error,” Mr. Medtronic Guy says. “Sometimes these things just happen. We don’t always know why. Do you have a backup plan for insulin delivery?”
I do. Will I get my pump back when it’s fixed?
No, that isn’t how it works. The new pump they’re sending will be mine for good. Mr. Medtronic Guy arranges the shipment, gives me some instructions, and apologizes for the malfunction, all in a timorous tone that suggests he expects me to erupt into rage at any second. His must be a lousy job.
I do not, of course, erupt into rage. I’m too busy trying to stave off panic. After the call, I instruct myself to breathe. It will be all right. I know what to do. It will be all right. Adapt, adapt. That’s what diabetics do; we adapt.
I’m starving. I renuke my dinner and fetch a syringe. Sixty grams of carbohydrate, no problem. I know my ratios like the back of my hand. I will adapt. I draw out four units of Novolog and do the belly stab.
Astute readers may notice a problem at this point.
I eat. I mourn Charlotte. How can she have broken after six short months? Are the pumping naysayers right after all? Is the technology not truly reliable? Have I built my diabetes care on a house of cards?
All that is well and good to ask. But here’s the heart of the matter: CHARLOTTE has broken. She’s dead. My beloved pump, whom I anticipated and welcomed and named and personified, my partner in health whose virtues I extolled throughout cyberspace, has left me. I’m alone with my diabetes.
If all this sounds more than a little neurotic, well, yeah, it is. You do what you have to do to get through the night, if you know what I mean. All that Charlotte business was what I had to do to get through the long dark weeks of adjusting to diabetes at age 33.
We all imagine contracts with the universe. I imagined that if I went on the pump in a way that felt true to me, I would be safer and happier. I was both of those things. Now I don’t know what I am.
But I am, at any rate, well fed. I call the pharmacy and get them to fill the Lantus prescription they had on file for me. I’ll need basal insulin to see me through until the arrival of Charlotte’s so-called replacement.
The pharmacy is just two blocks away, so I walk there, dragging my feet and fretting. I bring the Lantus home and call Mr. Brooklyn. He is startled: he’s put his trust in Charlotte just as I have.
“What do you mean, it broke?” he says. “How can it just break?”
As we talk I feel funny. It’s a slightly familiar feeling, like a low but with its own odd quality. A bit like the office-supply low of the tangerine chairs. It’s the feeling of free fall.
It takes me a few minutes, but then I understand: I took the hussy-on-the-pill dose of insulin with my shot. I should have taken the nimrod-off-the-pill dose.
I do the math. Slowly. I took 4 units for my 60 grams, using a 1:15 ratio. But I should have used 1:22.
I should have taken 2.7 units. Or, given the idiocy of my whole-unit syringes, 3 units and eaten 6 more grams of carbs.
I test and find some candy. 110. I had the insulin an hour ago. Yeah, I’m heading for a big ol’ crash.
I spend the next hour on the phone with Mr. Brooklyn, eating and testing, eating and testing. I keep myself out of the danger range, but the BG won’t seem to level off.
“I want my pump,” I tell him.
The astute reader will realize that this low has nothing to with Charlotte’s death and everything to do with my nimrodity, but I am not feeling astute at the moment.
After 55 grams of carb, the BG does level off. I am fine. But now I am terrified to use the Lantus. I don’t know what my nimrod-off-the-pill Lantus dose ought to be. And once you take Lantus, it’s in your system for 20-24 hours, period.
I could, and perhaps should, contact the endoc-on-call at my clinic. But I can’t imagine explaining that I am off the pill by accident, and my ratios changed, and then my pump broke, and how much Lantus should I take, please?
I know that I need very little basal insulin overnight, as I’m still honeymooning. I make an executive decision to skip the Lantus. I’ll correct periodically until the new pump comes, I decide.
I go to bed, trying to enjoy the feeling of not being attached to a mechanical device. I don’t enjoy it.
In the morning, I’m at 168. Unhealthy but hardly a disaster. I have to work a conference today, doing a presentation in front of 60 people. I decide to let myself run high. There’s no way I can stomach a big low on a day like this.
At lunchtime, I’m at 239. Whoops. I didn’t mean THAT high. Oh well.
The new pump arrives via Fed Ex, Saturday delivery. Kudos to Medtronic. I only needed three shots to see me through, albeit a bit shakily.
The pump looks just like Charlotte. Same color, same model. But it feels like a foreign object. I program it and am up and running within minutes. Then, following the instructions of Mr. Medtronic Guy, I put Charlotte in New Pump’s box to be picked up by UPS on Monday. It’s a tiny box, lined with foam. It’s absurdly like a coffin.
It's been a few days now. I still miss Charlotte; how weird is that? So far, New Pump does not seem like a girl. It doesn’t seem like my partner in self-care. It doesn’t seem like anything. It just does what it does.
I’m working on this attitude. I know it’s all mental. I need to live with this pump just as I needed to live with Charlotte. And New Pump is not, after all, inherently different than Charlotte. I’m the one who’s really changed.
Over the next few days I seesaw through lows and highs until I figure out the new score. Breakfast, which was 1:6, is now 1:9. Lunch has gone from 1:13 to 1:20. Dinner, 1:15 to 1:22. And my correction ratio, formerly 1 unit to lower the BG by 55, is now 1 unit for 80.
All of which will be moot when I return to the pill the following Sunday, but at least I’m back in control for the moment.
That Friday, I’m changing my set as usual. I go through the zillion and one steps until I’m ready to prime the tubing to fill it with insulin.
Charlotte beeps a lot at this point. She’s supposed to, to make sure I’ve remembered to disconnect the pump before I prime. If you prime while connected, you’ll infuse all sorts of unwanted insulin, a Very Bad Thing.
So she beeps as always. Good old Charlotte. But then, just before she starts the prime, she beeps very oddly. A strange sequence. And a strange message appears on her screen: A33.
I’ve never seen this before. I fetch the manual. Clear the alarm, it says, and if it continues to occur, call for assistance.
I clear the alarm. Charlotte’s screen goes completely blank, but restarts. Phew.
Funny, she wants to be rewound again. Okay. I rewind.
BEEP BEEP BEEP BEEP A33
I clear the alarm again. She restarts, asks to be rewound again, and alarms again. And again. She is stuck.
Charlotte?
I call Medtronic’s 800-number. I follow a push-button menu, expecting to be put on hold. I am not put on hold. A tech support guy answers, takes my name, and asks what my last blood glucose reading was.
Grrr. He wants to know if I’m having trouble with my pump because I’m running low & therefore confused. A reasonable, necessary, and patronizing question. “106,” I reply through gritted teeth. Then I describe the problem.
Mr. Medtronic Guy talks me through a diagnostic process that consists of doing exactly what I’d done before I called him. Charlotte remains steadfast in her refusal to leave the rewind cycle.
“Did you possibly drop the pump?” Mr. Medtronic Guy asks. “Or could it have gotten banged somehow?”
I assure him that this is not the case.
“I’m afraid we’ll have to send you a replacement pump,” he says.
I am shocked. Charlotte is dead? She is not even six months old. How could she be dead?
“It’s an internal communication error,” Mr. Medtronic Guy says. “Sometimes these things just happen. We don’t always know why. Do you have a backup plan for insulin delivery?”
I do. Will I get my pump back when it’s fixed?
No, that isn’t how it works. The new pump they’re sending will be mine for good. Mr. Medtronic Guy arranges the shipment, gives me some instructions, and apologizes for the malfunction, all in a timorous tone that suggests he expects me to erupt into rage at any second. His must be a lousy job.
I do not, of course, erupt into rage. I’m too busy trying to stave off panic. After the call, I instruct myself to breathe. It will be all right. I know what to do. It will be all right. Adapt, adapt. That’s what diabetics do; we adapt.
I’m starving. I renuke my dinner and fetch a syringe. Sixty grams of carbohydrate, no problem. I know my ratios like the back of my hand. I will adapt. I draw out four units of Novolog and do the belly stab.
Astute readers may notice a problem at this point.
I eat. I mourn Charlotte. How can she have broken after six short months? Are the pumping naysayers right after all? Is the technology not truly reliable? Have I built my diabetes care on a house of cards?
All that is well and good to ask. But here’s the heart of the matter: CHARLOTTE has broken. She’s dead. My beloved pump, whom I anticipated and welcomed and named and personified, my partner in health whose virtues I extolled throughout cyberspace, has left me. I’m alone with my diabetes.
If all this sounds more than a little neurotic, well, yeah, it is. You do what you have to do to get through the night, if you know what I mean. All that Charlotte business was what I had to do to get through the long dark weeks of adjusting to diabetes at age 33.
We all imagine contracts with the universe. I imagined that if I went on the pump in a way that felt true to me, I would be safer and happier. I was both of those things. Now I don’t know what I am.
But I am, at any rate, well fed. I call the pharmacy and get them to fill the Lantus prescription they had on file for me. I’ll need basal insulin to see me through until the arrival of Charlotte’s so-called replacement.
The pharmacy is just two blocks away, so I walk there, dragging my feet and fretting. I bring the Lantus home and call Mr. Brooklyn. He is startled: he’s put his trust in Charlotte just as I have.
“What do you mean, it broke?” he says. “How can it just break?”
As we talk I feel funny. It’s a slightly familiar feeling, like a low but with its own odd quality. A bit like the office-supply low of the tangerine chairs. It’s the feeling of free fall.
It takes me a few minutes, but then I understand: I took the hussy-on-the-pill dose of insulin with my shot. I should have taken the nimrod-off-the-pill dose.
I do the math. Slowly. I took 4 units for my 60 grams, using a 1:15 ratio. But I should have used 1:22.
I should have taken 2.7 units. Or, given the idiocy of my whole-unit syringes, 3 units and eaten 6 more grams of carbs.
I test and find some candy. 110. I had the insulin an hour ago. Yeah, I’m heading for a big ol’ crash.
I spend the next hour on the phone with Mr. Brooklyn, eating and testing, eating and testing. I keep myself out of the danger range, but the BG won’t seem to level off.
“I want my pump,” I tell him.
The astute reader will realize that this low has nothing to with Charlotte’s death and everything to do with my nimrodity, but I am not feeling astute at the moment.
After 55 grams of carb, the BG does level off. I am fine. But now I am terrified to use the Lantus. I don’t know what my nimrod-off-the-pill Lantus dose ought to be. And once you take Lantus, it’s in your system for 20-24 hours, period.
I could, and perhaps should, contact the endoc-on-call at my clinic. But I can’t imagine explaining that I am off the pill by accident, and my ratios changed, and then my pump broke, and how much Lantus should I take, please?
I know that I need very little basal insulin overnight, as I’m still honeymooning. I make an executive decision to skip the Lantus. I’ll correct periodically until the new pump comes, I decide.
I go to bed, trying to enjoy the feeling of not being attached to a mechanical device. I don’t enjoy it.
In the morning, I’m at 168. Unhealthy but hardly a disaster. I have to work a conference today, doing a presentation in front of 60 people. I decide to let myself run high. There’s no way I can stomach a big low on a day like this.
At lunchtime, I’m at 239. Whoops. I didn’t mean THAT high. Oh well.
The new pump arrives via Fed Ex, Saturday delivery. Kudos to Medtronic. I only needed three shots to see me through, albeit a bit shakily.
The pump looks just like Charlotte. Same color, same model. But it feels like a foreign object. I program it and am up and running within minutes. Then, following the instructions of Mr. Medtronic Guy, I put Charlotte in New Pump’s box to be picked up by UPS on Monday. It’s a tiny box, lined with foam. It’s absurdly like a coffin.
It's been a few days now. I still miss Charlotte; how weird is that? So far, New Pump does not seem like a girl. It doesn’t seem like my partner in self-care. It doesn’t seem like anything. It just does what it does.
I’m working on this attitude. I know it’s all mental. I need to live with this pump just as I needed to live with Charlotte. And New Pump is not, after all, inherently different than Charlotte. I’m the one who’s really changed.
The first thing
The first interesting thing that happened during my recent travels was that I lost my birth control pills. Well, all right. I did not lose them as such. I left them behind. But “lost” makes me sound like slightly less of a nimrod.
The reason I left the pills behind is that I was very, very nervous, because I was taking Mr. Brooklyn across the country to meet my family for the first time.
No matter. One can replace a lost prescription easily enough, right? Yes, one can. But it is a little more awkward when one’s brother tags along to the drugstore during the key pill-replacement window of opportunity.
Um.
I am sure families exist in which the (unmarried) adult children can acknowledge things like needing to refill a birth control prescription. Hell, mine may well be one of them. But I am not confident it is, and I wasn’t about to test the matter hours after introducing my sweetie for the first time. This was a bit absurd, as Mr. Brooklyn and I were sharing a room in my mother's home, but there you have it.
Off the pill I went, in the middle of the pack, which one is not supposed to do. Annoying and perplexing to my poor confused reproductive system, but whatever, I thought.
Ha ha.
The first couple of days went okay. The fam accepted Mr. Brooklyn with reasonable grace, at least in some cases (which is as good as it may ever get where Brother Violet is concerned). Mr. Brooklyn, naturally, was entirely charming. We returned to NY and sighed a collective sigh.
Then the lows started.
The first was post-pizza, always a dicey time. But I’d had this pizza before, and I thought I knew what I was doing with the insulin.
Two hours after eating, I was 69. Had some glucose tablets.
61. More tablets.
“I feel funny,” I said to Mr. Brooklyn. We were in an office-supply store, and I was sitting in a desk chair on display. It was tangerine orange and had a matching desk made of hard plastic. Nearby sat its counterparts in lime green.
Or maybe I was sitting in the green chair, and the ones nearby were orange. I really don’t remember.
“Am I too nice?” I asked Mr. Brooklyn. “Whenever we’re around your mother I think I’m too nice. She’s awfully tough.”
Mr. Brooklyn made reassuring murmurs about my personality and suggested that he steal some juice for me from the cooler at the cash register. No no, I said. I just ate a million glucose tablets. This next test will show that I am fine.
40.
Mr. Brooklyn hurried off to do his thieving. I drank enormous quantities of the lemonade he brought back. We talked about how the glucagon was in my bag at home. (Yeah, left behind. Who carries glucagon when they go out for pizza?) Or maybe I only think we talked about it. I really don’t remember.
Then I was fine. 78, 96. Hooray. I thought I’d wind up in the 300s after all that lemonade, but no. 164 was as high as I got.
After a scattering of other, less dramatic lows over the next few days, I did some research. Did you know that estrogen and progestin, the hormones found in most birth control pills, increase insulin resistance in some people? I did not know this. None of my various “diabetes team” members ever mentioned it, though they all know I’m on the pill. Maybe it’s a rare phenomenon; I’m not sure. What it means is that when you’re taking these hormones, you may need more insulin to cover your food. And if you leave your pills behind like a nimrod, you may soon need to take less insulin. A lot less.
[to be continued]
The reason I left the pills behind is that I was very, very nervous, because I was taking Mr. Brooklyn across the country to meet my family for the first time.
No matter. One can replace a lost prescription easily enough, right? Yes, one can. But it is a little more awkward when one’s brother tags along to the drugstore during the key pill-replacement window of opportunity.
Um.
I am sure families exist in which the (unmarried) adult children can acknowledge things like needing to refill a birth control prescription. Hell, mine may well be one of them. But I am not confident it is, and I wasn’t about to test the matter hours after introducing my sweetie for the first time. This was a bit absurd, as Mr. Brooklyn and I were sharing a room in my mother's home, but there you have it.
Off the pill I went, in the middle of the pack, which one is not supposed to do. Annoying and perplexing to my poor confused reproductive system, but whatever, I thought.
Ha ha.
The first couple of days went okay. The fam accepted Mr. Brooklyn with reasonable grace, at least in some cases (which is as good as it may ever get where Brother Violet is concerned). Mr. Brooklyn, naturally, was entirely charming. We returned to NY and sighed a collective sigh.
Then the lows started.
The first was post-pizza, always a dicey time. But I’d had this pizza before, and I thought I knew what I was doing with the insulin.
Two hours after eating, I was 69. Had some glucose tablets.
61. More tablets.
“I feel funny,” I said to Mr. Brooklyn. We were in an office-supply store, and I was sitting in a desk chair on display. It was tangerine orange and had a matching desk made of hard plastic. Nearby sat its counterparts in lime green.
Or maybe I was sitting in the green chair, and the ones nearby were orange. I really don’t remember.
“Am I too nice?” I asked Mr. Brooklyn. “Whenever we’re around your mother I think I’m too nice. She’s awfully tough.”
Mr. Brooklyn made reassuring murmurs about my personality and suggested that he steal some juice for me from the cooler at the cash register. No no, I said. I just ate a million glucose tablets. This next test will show that I am fine.
40.
Mr. Brooklyn hurried off to do his thieving. I drank enormous quantities of the lemonade he brought back. We talked about how the glucagon was in my bag at home. (Yeah, left behind. Who carries glucagon when they go out for pizza?) Or maybe I only think we talked about it. I really don’t remember.
Then I was fine. 78, 96. Hooray. I thought I’d wind up in the 300s after all that lemonade, but no. 164 was as high as I got.
After a scattering of other, less dramatic lows over the next few days, I did some research. Did you know that estrogen and progestin, the hormones found in most birth control pills, increase insulin resistance in some people? I did not know this. None of my various “diabetes team” members ever mentioned it, though they all know I’m on the pill. Maybe it’s a rare phenomenon; I’m not sure. What it means is that when you’re taking these hormones, you may need more insulin to cover your food. And if you leave your pills behind like a nimrod, you may soon need to take less insulin. A lot less.
[to be continued]
July 4, 2005
Firsts and repeats
Last week Charlotte and I attended a fancy-shmancy awards banquet at a conference related to my job. Here was an interesting pumping challenge: I needed a formal outfit, but I couldn’t hide the pump under a dress because the dinner was a business function with numerous courses & I wouldn’t be able to politely excuse myself every time I needed to bolus. Nor could I safely estimate the carbs ahead of time because I didn’t have the menu up front. (If I were very organized, I could have gotten it, but I am not.) I’m also not so good at counting carbs while I’m eating them. I need to see the food, count, bolus, and then eat exactly what I've counted if I’m to estimate well.
I ended up trying on most of my wardrobe hours before my flight to the conference. Finally I sorted it out: fancy skirt, Charlotte at hip on waistband of same, fancy blouse hanging down over Charlotte. Which is pretty much what I wear every day of my life, just a more formal version. Go figure.
Anyhow, Charlotte and I happily meandered through the meal. I pushed buttons as needed, chatted with the guests, and so on. Feeling especially free, I even ate dessert, which I seldom do. After the dinner, during a mingly period, I went to talk with the guests who were seated too far away for conversation during the meal. One lady was quite friendly. She wondered many things about me: where was I from, where had I gone to school, how had I come to work for my company, what was the meaning of the medical ID bracelet on my wrist?
Ooh, interesting segueway. In my 8 months of wearing the bracelet, this was the first time anyone who didn’t already know I’m diabetic has noted (at least verbally) that it’s a medical ID. It’s a rather pretty one and relatively subtle as these things go: Minnie
“I have diabetes,” I explained.
“And when did you go on the pump?” my new friend inquired.
Touché. Another first: Charlotte called out in public by someone who is Not Violet.
See, I’m still a child at all this, really. I’m not the bold, brilliant, beautiful K at the beach with Charlene. And you guys with the type 1 kids have been around this block many times already, only you’re coaching kids of 4, 6, 9 on how to answer much less politely phrased questions than this one. I'm still just a neophyte.
I guess what I’m saying here is that I needed my mom.
Mom was not, alas, in the vicinity. So I answered the question, briefly noted my happiness with Charlotte, and waited to see what would happen next.
As I waited I observed to myself: how strange this feels, to have been dining gracefully (I thought) with my pump while this woman across the table was observing me the entire time. How strange to be discussing my medical status with an important guest in a business setting. How strange to have seemingly no control over any of these things. How very diabetes-ish life can be, since I got diabetes.
The woman went on to explain that her son, age 24, has had type 1 since he was 4. (Ohh.) And hasn’t been to the doctor for 3 years (ohhh), though he seems fine, but she worries about him, naturally, it's been 20 years with DM and of course he knows he ought to go to the doctor but still he seems to be doing fine…
Ahhh.
It wasn’t about me at all. Not at all. It was just another one of us, needing to tell a story. That, my friends, I know plenty about.
I ended up trying on most of my wardrobe hours before my flight to the conference. Finally I sorted it out: fancy skirt, Charlotte at hip on waistband of same, fancy blouse hanging down over Charlotte. Which is pretty much what I wear every day of my life, just a more formal version. Go figure.
Anyhow, Charlotte and I happily meandered through the meal. I pushed buttons as needed, chatted with the guests, and so on. Feeling especially free, I even ate dessert, which I seldom do. After the dinner, during a mingly period, I went to talk with the guests who were seated too far away for conversation during the meal. One lady was quite friendly. She wondered many things about me: where was I from, where had I gone to school, how had I come to work for my company, what was the meaning of the medical ID bracelet on my wrist?
Ooh, interesting segueway. In my 8 months of wearing the bracelet, this was the first time anyone who didn’t already know I’m diabetic has noted (at least verbally) that it’s a medical ID. It’s a rather pretty one and relatively subtle as these things go: Minnie
“I have diabetes,” I explained.
“And when did you go on the pump?” my new friend inquired.
Touché. Another first: Charlotte called out in public by someone who is Not Violet.
See, I’m still a child at all this, really. I’m not the bold, brilliant, beautiful K at the beach with Charlene. And you guys with the type 1 kids have been around this block many times already, only you’re coaching kids of 4, 6, 9 on how to answer much less politely phrased questions than this one. I'm still just a neophyte.
I guess what I’m saying here is that I needed my mom.
Mom was not, alas, in the vicinity. So I answered the question, briefly noted my happiness with Charlotte, and waited to see what would happen next.
As I waited I observed to myself: how strange this feels, to have been dining gracefully (I thought) with my pump while this woman across the table was observing me the entire time. How strange to be discussing my medical status with an important guest in a business setting. How strange to have seemingly no control over any of these things. How very diabetes-ish life can be, since I got diabetes.
The woman went on to explain that her son, age 24, has had type 1 since he was 4. (Ohh.) And hasn’t been to the doctor for 3 years (ohhh), though he seems fine, but she worries about him, naturally, it's been 20 years with DM and of course he knows he ought to go to the doctor but still he seems to be doing fine…
Ahhh.
It wasn’t about me at all. Not at all. It was just another one of us, needing to tell a story. That, my friends, I know plenty about.
July 1, 2005
Normal
I am not (never have been), but the MRI was. Phew. Thanks for the support, guys. I still have the pricklies, not quite as often, so perhaps the B12 injections are helping. I need to follow up more aggressively. As much as I like Dr. Keeper, her approach to this situation is very "wait and see," which is not to my liking. Consider, for example: if I'm having nerve problems due to B12 malabsorption (unproven), might I not also be malabsorbing other nutrients? I might, depending on the cause of the B12 problem (if there is one). But Dr. Keeper is not checking for this. She's just waiting to see if I get better, which could take "a few months." I'll have to go back in and ask her for more tests if I want to find out if I'm low on any other essential-to-life entities.
Meanwhile, change abounds in Pumplandia. My company is transferring me (at my instigation) to New York.
New York!
Home of Bionic Bagels. Home of Spamalot. Home of very tall bulidings with intriguing shapes.
Oh, yeah--also the home of Mr. Brooklyn and his remarkable children.
More to come...
Meanwhile, change abounds in Pumplandia. My company is transferring me (at my instigation) to New York.
New York!
Home of Bionic Bagels. Home of Spamalot. Home of very tall bulidings with intriguing shapes.
Oh, yeah--also the home of Mr. Brooklyn and his remarkable children.
More to come...
June 19, 2005
The needle returneth
I’m very bored with writing about my health. Is this akin to the malaise expressed by Kerri here? I think kinda sorta.
But anyway: I’m now on injections for possible B12 deficiency. Dr. Keeper says they cannot, regrettably, be self-administered. Must go to clinic to receive. It’s one per day for 4 days, one per week for 4 weeks, 1 per month for…well, forever.
It’s a little strange to be on a permanent medication for something that only might be wrong with me, but Dr. K says it’s much wiser to treat than to disregard, as a B12 deficiency can cause all manner of permanent damage to multiple systems if left to its own devices. This coincides with my research on the subject, so I’ll trot myself to the clinic like a good little possible pernicious anemic.
There’s stuff all over the web about oral treatment for B12 def. rather than injections. Dr. K says we can consider that down the road.
She also says I need an MRI. That’s because this neuropathy sounds a little funny to her. The pain doesn’t stay put in my limbs, which (she says) it generally does with B12 problems. I get the pinpricks mostly in the feet and hands, but also legs, arms, side, face, head. Now and then. Not a lot. But noticeably. And that is weird enough that Dr. K says we ought to rule out MS, which can cause abnormal sensation in all manner of places and ways.
Oh, good.
Of course, having been completely bamboozled by this information when I set up the test, I scheduled it for the ONLY time next week when I CANNOT leave my office. Now I must reschedule. So who knows when it will be or when I’ll get results.
On a considerably lighter note, kudos to Tekakwitha, who has rescued much my summer wardrobe from Goodwill with this comment. I got the Minimed thigh thing T mentions, and it does NOT fall down or require additional contraptions to hold it up. Indeed, it’s so adjustable that one can inflict whatever level of circulatory disruption to the thigh one likes, all in the name of fashion bliss. So Charlotte and I are at peace once again.
Now I just need to decide which dress is appropriate to wear to an MRI. Ahem.
But anyway: I’m now on injections for possible B12 deficiency. Dr. Keeper says they cannot, regrettably, be self-administered. Must go to clinic to receive. It’s one per day for 4 days, one per week for 4 weeks, 1 per month for…well, forever.
It’s a little strange to be on a permanent medication for something that only might be wrong with me, but Dr. K says it’s much wiser to treat than to disregard, as a B12 deficiency can cause all manner of permanent damage to multiple systems if left to its own devices. This coincides with my research on the subject, so I’ll trot myself to the clinic like a good little possible pernicious anemic.
There’s stuff all over the web about oral treatment for B12 def. rather than injections. Dr. K says we can consider that down the road.
She also says I need an MRI. That’s because this neuropathy sounds a little funny to her. The pain doesn’t stay put in my limbs, which (she says) it generally does with B12 problems. I get the pinpricks mostly in the feet and hands, but also legs, arms, side, face, head. Now and then. Not a lot. But noticeably. And that is weird enough that Dr. K says we ought to rule out MS, which can cause abnormal sensation in all manner of places and ways.
Oh, good.
Of course, having been completely bamboozled by this information when I set up the test, I scheduled it for the ONLY time next week when I CANNOT leave my office. Now I must reschedule. So who knows when it will be or when I’ll get results.
On a considerably lighter note, kudos to Tekakwitha, who has rescued much my summer wardrobe from Goodwill with this comment. I got the Minimed thigh thing T mentions, and it does NOT fall down or require additional contraptions to hold it up. Indeed, it’s so adjustable that one can inflict whatever level of circulatory disruption to the thigh one likes, all in the name of fashion bliss. So Charlotte and I are at peace once again.
Now I just need to decide which dress is appropriate to wear to an MRI. Ahem.
June 11, 2005
Charlotte vs. the Summer Wardrobe
She’s winning.
I know the tricks: the thigh thing, the bra thing, the cutesie pouches. I’ve shopped the accessory websites. But there’s a certain category of sundress for which none of the tricks work. I can’t do the bra clippie thing because I’m not, errr, properly built. With many of my clothes I can hide the pump under my arm, in the side of my bra, but with some dresses it sticks out horribly there. Depends on how the dress is cut. And the thigh thing falls down unless I wear it with a garter belt, which shows under lots of fabrics in a very obvious, look-at-me-I’m-wearing-sexually-charged-lingerie-and-might-be-a-harlot-would-you-care-to-find-out? kinda way.
I own, like, six dresses in this category. They are (were) my favorites. Whine, whine, whine.
There’s one thing I haven’t tried. It’s an adjustable garter thingie. Maybe this would stay up without a garter belt? It even comes in two sizes, a brilliant acknowledgment that women do not, in fact, have made-to-order thighs. I will invest the 30 bucks and report back.
I know the tricks: the thigh thing, the bra thing, the cutesie pouches. I’ve shopped the accessory websites. But there’s a certain category of sundress for which none of the tricks work. I can’t do the bra clippie thing because I’m not, errr, properly built. With many of my clothes I can hide the pump under my arm, in the side of my bra, but with some dresses it sticks out horribly there. Depends on how the dress is cut. And the thigh thing falls down unless I wear it with a garter belt, which shows under lots of fabrics in a very obvious, look-at-me-I’m-wearing-sexually-charged-lingerie-and-might-be-a-harlot-would-you-care-to-find-out? kinda way.
I own, like, six dresses in this category. They are (were) my favorites. Whine, whine, whine.
There’s one thing I haven’t tried. It’s an adjustable garter thingie. Maybe this would stay up without a garter belt? It even comes in two sizes, a brilliant acknowledgment that women do not, in fact, have made-to-order thighs. I will invest the 30 bucks and report back.
June 8, 2005
In which I have little to say
EMG = normal. Yay! I still have the symptoms, though. I need to talk to the doctor but can't find the wherewithal to do it. Low low energy on the self-care front right now. The only thing I've accomplished all week is one little tiny bout of exercise. On the plus side, I'm eating like a responsible diabetic again. (The bionic bagels, incidentally, prevailed...That third hour nails me every time. Maybe I have to take an extra bolus then? Hmm, dangerous.)
Aha, I do have one positive story to relate. This will seem like nothing to longtimers, but for me it felt bold: I went dancing while I was in New York. I hadn't been dancing since before my dx six months ago; I was worried about going too low or too high (in an attempt not to go too low) from the funny bits of intense exercise. Actually, Mr. Brooklyn had tried to take me dancing on my birthday, but I messed up my fancy-dinner bolus and wound up at 330, too high for safe physical activity...
Anyhow, I didn't go low, just a smidge high from dropping my basal more than I needed to. And we had a great time. Diabetes, I fart in your general direction! (We also saw Spamalot last week...)
Aha, I do have one positive story to relate. This will seem like nothing to longtimers, but for me it felt bold: I went dancing while I was in New York. I hadn't been dancing since before my dx six months ago; I was worried about going too low or too high (in an attempt not to go too low) from the funny bits of intense exercise. Actually, Mr. Brooklyn had tried to take me dancing on my birthday, but I messed up my fancy-dinner bolus and wound up at 330, too high for safe physical activity...
Anyhow, I didn't go low, just a smidge high from dropping my basal more than I needed to. And we had a great time. Diabetes, I fart in your general direction! (We also saw Spamalot last week...)
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.
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...
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!
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!
(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.
(DUH.)
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:
PLEASE NOTE: ALTHOUGH THE REFERENCE RANGE FOR VITAMIN B12 IS 200-1100 PG/ML, IT HAS BEEN REPORTED THAT BETWEEN 5 AND 10% OF PATIENTS WITH VALUES BETWEEN 200 AND 400 PG/ML MAY EXPERIENCE NEUROPSYCHIATIC AND HEMATOLOGIC ABNORMALITIES DUE TO OCCULT B12 DEFICIENCY; LESS THAN 1% OF PATIENTS WITH VALUES ABOVE 400 PG/ML WILL HAVE SYMPTOMS.
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—
SHOTS!
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.
(DUH.)
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:
PLEASE NOTE: ALTHOUGH THE REFERENCE RANGE FOR VITAMIN B12 IS 200-1100 PG/ML, IT HAS BEEN REPORTED THAT BETWEEN 5 AND 10% OF PATIENTS WITH VALUES BETWEEN 200 AND 400 PG/ML MAY EXPERIENCE NEUROPSYCHIATIC AND HEMATOLOGIC ABNORMALITIES DUE TO OCCULT B12 DEFICIENCY; LESS THAN 1% OF PATIENTS WITH VALUES ABOVE 400 PG/ML WILL HAVE SYMPTOMS.
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—
SHOTS!
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.
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."
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.
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.
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.
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.
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?
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.
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.
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.
April 14, 2005
In which I prove yet again my difficulties with the physical world
As my friend Scott notes, one of the beauties and perils of the pump is that it obeys its human, to which I would add another: once a person is used to operating it, it's easy. Really, really easy. And things that are easy to do are easy, for a head-in-the-clouds person like me, to forget to do.
Yesterday I hummed along as usual through my morning breakfast-making routine. Tea, check. Toast, check. Peanut butter, check. Oatmeal and milk, check. BG test, check. Carry all to the computer without dropping anything, check. (Is anyone really surprised that I eat at the computer? Didn't think so.) Munch, munch, munch. Happy Violet with her 48 grams of carbs. Just another morning.
Two hours later I did the follow-up BG test: 340.
For many of us, 340 is not an earth-shaking event. It happens for all kinds of reasons: stress, wrong food, certain kinds of exercise, eating too much when you go low and feel like you're gonna die if you don't have cereal NOW. But as a somewhat recently diagnosed type 1, I'm still in the honeymoon period, meaning that my pancreas still makes some insulin. That helps quite a bit with my BG control. I see numbers in the 200s with some regularity, but I don't get higher than that unless something's really out of whack.
So for me, 340 is a freak out, do backup tests on 2 different meters, talk to myself in worried tones kinda number. My first thought was that something had gone wrong with my infusion set. Had Charlotte given me an alarm that I hadn't noticed? No, no alarm. Well, let's try a correction and see what happens. I'll just check to see how much insulin Charlotte says is still in my system from breakfast--
Oh. Charlotte says there is no insulin in my system from breakfast. Well, that's just not possible. I took 8 units 2 hours ago, so there should be at least--
Oh. Charlotte says I didn't take 8 units 2 hours ago. She says I didn't take ANY units 2 hours ago.
She says, in fact, that I haven't taken any insulin (except my usual ongoing trickle) since last night.
Oh.
I forgot my breakfast insulin.
Hello? Earth to Violet? How do you FORGET a life-sustaining drug?
Well, if it's in the form of a shot it's a lot harder. One tends to notice the whole stabbing-one's-abdomen thing, or the absence thereof. But with Charlotte all I have to do is push a few buttons. And in yesterday's oatmeal-induced bliss, I just never pushed em.
340, by the way, turned out to mean a day of nausea and sleepiness. Plus, not surprisingly, a rebound low when I overdid the correction...
Yesterday I hummed along as usual through my morning breakfast-making routine. Tea, check. Toast, check. Peanut butter, check. Oatmeal and milk, check. BG test, check. Carry all to the computer without dropping anything, check. (Is anyone really surprised that I eat at the computer? Didn't think so.) Munch, munch, munch. Happy Violet with her 48 grams of carbs. Just another morning.
Two hours later I did the follow-up BG test: 340.
For many of us, 340 is not an earth-shaking event. It happens for all kinds of reasons: stress, wrong food, certain kinds of exercise, eating too much when you go low and feel like you're gonna die if you don't have cereal NOW. But as a somewhat recently diagnosed type 1, I'm still in the honeymoon period, meaning that my pancreas still makes some insulin. That helps quite a bit with my BG control. I see numbers in the 200s with some regularity, but I don't get higher than that unless something's really out of whack.
So for me, 340 is a freak out, do backup tests on 2 different meters, talk to myself in worried tones kinda number. My first thought was that something had gone wrong with my infusion set. Had Charlotte given me an alarm that I hadn't noticed? No, no alarm. Well, let's try a correction and see what happens. I'll just check to see how much insulin Charlotte says is still in my system from breakfast--
Oh. Charlotte says there is no insulin in my system from breakfast. Well, that's just not possible. I took 8 units 2 hours ago, so there should be at least--
Oh. Charlotte says I didn't take 8 units 2 hours ago. She says I didn't take ANY units 2 hours ago.
She says, in fact, that I haven't taken any insulin (except my usual ongoing trickle) since last night.
Oh.
I forgot my breakfast insulin.
Hello? Earth to Violet? How do you FORGET a life-sustaining drug?
Well, if it's in the form of a shot it's a lot harder. One tends to notice the whole stabbing-one's-abdomen thing, or the absence thereof. But with Charlotte all I have to do is push a few buttons. And in yesterday's oatmeal-induced bliss, I just never pushed em.
340, by the way, turned out to mean a day of nausea and sleepiness. Plus, not surprisingly, a rebound low when I overdid the correction...
April 7, 2005
In which I get over myself, for unfortunate reasons
Well. I’m not sure what to say here about my visit with Mr. Brooklyn because it was so packed with intense, unexpected events that my anxieties re: Charlotte fade to nothing in comparison to the non-Charlotte-related things that actually happened. That’s not meant dismissively; the anxiety was a big part of the trip, even though Mr. Brooklyn’s reactions to the pump proved to be much as the kind commenters predicted below. He was utterly unfazed by any aspect of my bionicness—so much so, in fact, that I wondered if he was pretending. Nope, he wasn’t.
So: three cheers for Mr. Brooklyn, yay yay yay! But to my surprise, I nevertheless still had to overcome my own hang-ups about how I feel about my pumping self (damn). I thought they’d evaporate once I knew he was okay with dating a cyborg. In a twisted way, I guess I should celebrate my independence: my conflicted self-esteem is dependent on my OWN feelings, not those of some man! Ha!
Hmm. A dubious victory at best. Anyhow, the aforementioned intense, unexpected events, beside which the body image issues seem pathetic and laughable, are all off topic for this blog except one: Mr. Brooklyn appears to have prediabetes. I say “appears” because we made this discovery through the scientifically invalid process of testing him with my meter. Home BG meters are nowhere near as accurate as laboratory bloodwork. I’ve read, though I can’t recall where, that a home meter can be off as much as 5-10% in normal circumstances, i.e., when the meter is working as it’s supposed to. So it’s an unsound practice, generally speaking, to randomly test your loved ones and conclude that they have medical problems based on those results.
That said…we tested him a lot over several days—fasting, postprandial, etc. And he was well into the prediabetes range for whatever test we did (see the above link to ADA info for those ranges) every time except one, which was slightly into the diabetic range. Given that my meter and test strips appear to be working fine, I think there’s a serious likelihood that he’s prediabetic. In fact, even subtracting a 10% potential error from every test we did, each result still falls into the prediabetes range. Not good.
Those familiar with type 2 know that finding out you have prediabetes is a hell of a lot better than the alternative, which almost inevitably is finding out—often years later, with the onset of complications—that you have the real deal. Prediabetes is a sort of metabolic godsend in that if you take action, through exercise and diet modification, you MAY be able to “prevent or delay” (that’s the ADA again) the onset of type 2. So Mr. Brooklyn has here a warning sign, and if he responds by changing his lifestyle in significant and rather painful ways, he might not develop type 2. That makes him a lot more fortunate than the 16 million Americans who already have it.
OK, there’s the logic. Now the emotion: I don’t feel fortunate and I don’t feel that he’s fortunate either. I am SICK of diabetes affecting me and my people and zillions of other folks as well. I am pissed and frightened and tired. He doesn’t deserve this any more than I deserve my type 1. I want it all to go away. Right now.
I also want, with terrifying fervor, to control his response to this situation, to ensure that he does what needs to be done in spite of how horribly difficult it will be. I can’t do that, of course. All I can do is support him—from very far away—and hope for the best. And realize that we'll deal with it together, if it comes to that.
So: three cheers for Mr. Brooklyn, yay yay yay! But to my surprise, I nevertheless still had to overcome my own hang-ups about how I feel about my pumping self (damn). I thought they’d evaporate once I knew he was okay with dating a cyborg. In a twisted way, I guess I should celebrate my independence: my conflicted self-esteem is dependent on my OWN feelings, not those of some man! Ha!
Hmm. A dubious victory at best. Anyhow, the aforementioned intense, unexpected events, beside which the body image issues seem pathetic and laughable, are all off topic for this blog except one: Mr. Brooklyn appears to have prediabetes. I say “appears” because we made this discovery through the scientifically invalid process of testing him with my meter. Home BG meters are nowhere near as accurate as laboratory bloodwork. I’ve read, though I can’t recall where, that a home meter can be off as much as 5-10% in normal circumstances, i.e., when the meter is working as it’s supposed to. So it’s an unsound practice, generally speaking, to randomly test your loved ones and conclude that they have medical problems based on those results.
That said…we tested him a lot over several days—fasting, postprandial, etc. And he was well into the prediabetes range for whatever test we did (see the above link to ADA info for those ranges) every time except one, which was slightly into the diabetic range. Given that my meter and test strips appear to be working fine, I think there’s a serious likelihood that he’s prediabetic. In fact, even subtracting a 10% potential error from every test we did, each result still falls into the prediabetes range. Not good.
Those familiar with type 2 know that finding out you have prediabetes is a hell of a lot better than the alternative, which almost inevitably is finding out—often years later, with the onset of complications—that you have the real deal. Prediabetes is a sort of metabolic godsend in that if you take action, through exercise and diet modification, you MAY be able to “prevent or delay” (that’s the ADA again) the onset of type 2. So Mr. Brooklyn has here a warning sign, and if he responds by changing his lifestyle in significant and rather painful ways, he might not develop type 2. That makes him a lot more fortunate than the 16 million Americans who already have it.
OK, there’s the logic. Now the emotion: I don’t feel fortunate and I don’t feel that he’s fortunate either. I am SICK of diabetes affecting me and my people and zillions of other folks as well. I am pissed and frightened and tired. He doesn’t deserve this any more than I deserve my type 1. I want it all to go away. Right now.
I also want, with terrifying fervor, to control his response to this situation, to ensure that he does what needs to be done in spite of how horribly difficult it will be. I can’t do that, of course. All I can do is support him—from very far away—and hope for the best. And realize that we'll deal with it together, if it comes to that.
March 29, 2005
I'm Too Sexy for My Pump, Part II
One of the curious and not very likeable aspects (and there are many) of being in a long-distance relationship is that you may find yourself attached for six weeks to a medical device that your beloved person has yet to see. Such is the state of events in Pumplandia, as I last saw my fella the day before I hooked up with Charlotte. This is about to change. I’m off to NY on Thursday, and Charlotte, it goes without saying, will travel with me.
So. Hmm. In a perfect world, this voyage would be without pump-related tension for me. I would be perfectly reconciled to my slightly altered body image, feeling brilliantly attractive, and well equipped with a bevy of pump-compatible girlie outfits. I would be brimming with confidence in my natural sexiness and its ability to carry the day over the, um, visual distractions posed by the infusion set, tubing, and adhesive. But in the imperfect world of diabetes as it intersects with my personality, I only feel/have each of those four things a little bit, some of the time. None at the moment. Even my clothes seem ugly today.
Let me interject at this point that Mr. Brooklyn is and has been as affirming, encouraging, and supportive of my journey into Pumplandia as any partner could be. He has told me in a dozen ways that he isn’t troubled in the least by the concept of those “visual distractions.” I believe him. But I also believe that he can’t really know that for sure, can he, until he sees what I look like with an infusion set stuck in my tummy. Argh. So even though I know on an intellectual level that any worthwhile partner, which Mr. Brooklyn certainly is, would be accepting of the pump, I’m still more distressed than I care to admit.
I keep meaning to post about my experiences telling a coworker about pumping. The exchange reminded me of my own initial feelings about it, when I first heard about the possibility during a period of post-diagnosis shock. Truth is, I was, on an involuntary and visceral level, revolted by the idea of having something attached to me and entering my body. This is hard to acknowledge openly because the last thing I want to do is contribute to anyone’s negative feelings about the gizmo, particularly a prospective pumper (e-mail me!) who is trying to sort through those emotions and needs support. Perhaps for this very reason, I have yet to talk with a person who has a pump who has openly said, yeah, there is something a little gross about it at times, even to me. But that feeling was, for me at that time, a fact. This is the involuntary reaction that I fear in my sweetie, who despite being a very good man cannot help what his brain does with a piece of visual data.
What changed that reaction for me (most of the time) was information. I got to know people who were using pumps, had none of those feelings (or if they had em had dealt with them already!), and were realizing tangible health benefits. And I got a look at actual pumps and infusion sets and decided, okay, I can cope with this. And, maybe most of all, I decided through research that there was an important relationship between my going on the pump and preparing to someday get pregnant and have an optimally healthy pregnancy & baby.
But, as we see, some of the difficulty lingers for me in spite of the progress I’ve made. Honestly, I do believe that my relationship will make the transition just fine. I just wish he had been here, or I there, from the start.
So. Hmm. In a perfect world, this voyage would be without pump-related tension for me. I would be perfectly reconciled to my slightly altered body image, feeling brilliantly attractive, and well equipped with a bevy of pump-compatible girlie outfits. I would be brimming with confidence in my natural sexiness and its ability to carry the day over the, um, visual distractions posed by the infusion set, tubing, and adhesive. But in the imperfect world of diabetes as it intersects with my personality, I only feel/have each of those four things a little bit, some of the time. None at the moment. Even my clothes seem ugly today.
Let me interject at this point that Mr. Brooklyn is and has been as affirming, encouraging, and supportive of my journey into Pumplandia as any partner could be. He has told me in a dozen ways that he isn’t troubled in the least by the concept of those “visual distractions.” I believe him. But I also believe that he can’t really know that for sure, can he, until he sees what I look like with an infusion set stuck in my tummy. Argh. So even though I know on an intellectual level that any worthwhile partner, which Mr. Brooklyn certainly is, would be accepting of the pump, I’m still more distressed than I care to admit.
I keep meaning to post about my experiences telling a coworker about pumping. The exchange reminded me of my own initial feelings about it, when I first heard about the possibility during a period of post-diagnosis shock. Truth is, I was, on an involuntary and visceral level, revolted by the idea of having something attached to me and entering my body. This is hard to acknowledge openly because the last thing I want to do is contribute to anyone’s negative feelings about the gizmo, particularly a prospective pumper (e-mail me!) who is trying to sort through those emotions and needs support. Perhaps for this very reason, I have yet to talk with a person who has a pump who has openly said, yeah, there is something a little gross about it at times, even to me. But that feeling was, for me at that time, a fact. This is the involuntary reaction that I fear in my sweetie, who despite being a very good man cannot help what his brain does with a piece of visual data.
What changed that reaction for me (most of the time) was information. I got to know people who were using pumps, had none of those feelings (or if they had em had dealt with them already!), and were realizing tangible health benefits. And I got a look at actual pumps and infusion sets and decided, okay, I can cope with this. And, maybe most of all, I decided through research that there was an important relationship between my going on the pump and preparing to someday get pregnant and have an optimally healthy pregnancy & baby.
But, as we see, some of the difficulty lingers for me in spite of the progress I’ve made. Honestly, I do believe that my relationship will make the transition just fine. I just wish he had been here, or I there, from the start.
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