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.
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