Sunday, September 19, 2010

Yom Kipper.

This Yom Kippur I:
  • Spent a day in services praying, during which I felt connected to what I was saying.
  • Layned both the morning and evening readings and was congratulated on reading well by so many people that I think I believe them.
  • Read a book that helped my thoughts go where they ought to have (Mitch Albom's Have Little Faith)
  • Composed a poem/prayer, which I wrote down afterwards.
  • Fasted.
  • Talked to interesting people.
But unfortunately, this was my first fast day in which I ran more than trace ketones. I brought (or actually, gave the Rabbi on Friday to bring so that I'd have them on Saturday) urine ketone strips, foil wrapped. I used them in the synagogue and they changed to deep purple as soon as they touched the urine- fifteen seconds did nothing to the color. I didn't have the comparison chart but suspect that means very large urine ketones.
I'm pretty sure I know how I goofed- I meant to run high, but I ran too high. I lowered my Lantus dose too much , and I didn't correct as frequently as I should have. I think wearing the Dexcom exaggerated in my mind the risk of going low. I'm not sure exactly why I think that.
I also think I got the impression that I didn't get ketones easily from checking them a lot when I was a bit newer to diabetes and always having them negative, and that possibly the length of time that I've had diabetes makes me more likely to get ketones now.

Once I got the ketones, I wasn't even sure what to do, other than get more aggressive with my highs, and ended up still holding out to the end of the fast. I'm not sure where my ketone strips have gotten to now, but those ones were expired anyways. I'm going to go buy some new ones in the morning. My blood sugar came down, by the way, and I went hypo (47) around midnight. That's why I'm still awake to write this post.

Friday, September 17, 2010

End First Sensor

It was still functioning pretty well, but after 16 days of use I decided to take it out because it was starting to really itch, the adhesive was off enough that the sensor was partly out and that hurt, and it's going to be Yom Kippur in a few hours and I don't want to be wearing it on Yom Kippur.
The place where the sensor was looks like a red irritated dot, a slightly scaly, slightly red patch around it, and a sticky but otherwise normal ring around that. I'm going to take a bath soon and then maybe it will look nicer.

This first sensor was in my upper left arm. I'm hoping to put the second sensor into my abdomen, on the left side, on Saturday night or Sunday. I'm going to wait for a time when my stomach doesn't hurt much. I don't do shots in my stomach when I have much stomach pain or nausea and I'm not going to insert a sensor during a time when that area is already in pain. If by Monday morning I haven't had a pain free opportunity for insertion, I'll put the sensor elsewhere. My thigh, maybe.

Have a wonderful, meaningful, prayerful Yom Kippur and an easy fast.

Thursday, September 16, 2010

Sunday, September 12, 2010

Further Thoughts on Dexcom (Still on First Sensor)

The little charge icon on the dexcom, the battery picture, has three bars when full. I get this. When I plug it in and leave it plugged in, the number of bars goes up after a while. I get that.

What I have learned: I recharged the Dex on Wednesday around noon. I did not want to be charging it on Rosh Hashana or Shabbes, which makes for a seventy three hour stretch (I'll have two more such stretches). I was not sure if it would last. Here's what happened: I woke up on Thursday still with three bars, but early it went to two bars. Friday morning I had one bar. Saturday morning I had one bar. Saturday late morning, the one bar started blinking, and I tried to minimize use, but I still had alarms go off and checked it and so forth. Saturday evening when the sabbath ended, it was still blinking one bar.
And that charge up was the quickest yet!

Question: Is there any way to know if the Dex is fully charged when it's charging? Is there anything it does to say it's done, or is the only way to check by unplugging it and taking a look?
Also, any expertise on what makes a charge last longer or go faster? Is it better to charge it when it's at two bars or a blinking one?

I did locate the dexcom website's demo on their software. You can, very blurrily, preview what happens with the software. On Tuesday I'm going to my dad's office where he has a computer running Windows.

I have had one more ??? episode, but it lasted less than an hour and was this morning. Of all the calibrations I've done so far, about half have been within 2%. All but one were within 20%. That one was about 75% off. I think this is overall very good.

The number of fairly flat lines I've seen on the three hour graph fairly well takes my breath away. Of the flat lines I saw on the Guardian in 2008, almost all were due to sensor failure. I saw maybe two legitimate flat lines lasting over an hour in over 100 days' worth of sensor wear. I suspect that this means that I now have more possibility of getting the blood sugars I want, even though I had been assuming that things were getting worse with my body.
I'm also seeing more meal time spikes (I saw almost no meal time spikes on the Guardian) which I think is probably good news about my digestion, but maybe due to a change in diet, of eating lower fat these days.

Wednesday, September 08, 2010

Diabtes Meme

From Kerri by way of Dorkabetic

What type of diabetes do you have: Type 1

When were you diagnosed: September 1, 2006.

What's your current blood sugar: Dexcom is reading 113 with a slow rise, and my last Accu chek aviva reading, almost three hours ago, was 102.

What kind of meter do you use: Accu-Chek Aviva and Dexcom. I've used samples of various meters and for a study once used a One Touch Ultra for a month.

How many times a day do you test your blood sugar: Pre-Dexcom, I was averaging 9x per day. This past week, it's been about 4x per day plus up to 288 readings from the Dexcom, which I look at frequently. On the Guardian I got down to 3x per day... maybe soon.

What's a "high" number for you: Anything over 155 is a "little high," over 200 is "high" and over about 280 is "really high". Over 350 is "really really high" and makes me upset and angry.

What do you consider "low": 60 is where I consider myself low regardless of symptoms. Above that, if I'm dropping rapidly or under 80, if I'm symptomatic, I'm low.

What's your favorite low blood sugar reaction treater: Soft mints. I also like to mix water and juice (and 5:1) in a water bottle to drink while walking to deal with hypos in a sort of prophylactic way.

Describe your dream endo: Always has time for me, knows about multiple endocrine issues, willing to run tests, no blame, keeps up with products, always remembers what's going on with my help. Follows up promptly. My endo is pretty good.

What's your biggest diabetes achievement: Not letting go of my blood sugar even through the pain of gallstone pancreatitis, or maybe keeping up with my insulin needs as they have changed by a factor of ten.

What's your biggest diabetes-related fear: That I won't be able to work due to health stuff, and that I will adopt kids only to die or be too exhausted to care for them while they're still young.

Who's on your support team: Carrie mostly, but my family and the folks online too.

Do you think there will be a cure in your lifetime: Depends on what a cure is defined as. Sometimes I'm not sure we don't already have it, in some sense, in the pancreas (and islet cell) transplant. I think the odds of a functional artificial pancreas in the next ten years that really and truly manages diabetes are slim to none. I do not care about that really. I think it's much more important to maximize what we have now, diabetes wise.
I think that it's extremely unlikely that thirty years from now, nobody will be dying of diabetes.

What is a "cure" to you: Something that takes ALL of the pressure of managing diabetes off of the diabetic, and maintains good enough blood sugar and diabetes complications cannot happen. I'm not convinced that blood sugar control alone is enough to prevent complications (maybe c-peptide is also needed), but whatever is needed to prevent complications, the "cure" has to provide it.

The most annoying thing people say to you about your diabetes is: I'd rather die than have to do that.

What is the most common misconception about diabetes: That blood sugar control is a matter of personal control.

If you could say one thing to your pancreas, what would it be: Ssssh. You're okay.

Monday, September 06, 2010

Books I've read with diabetes

I am a voracious reader, and I prefer nonfiction. I keep a list of nonfiction books, by library of congress classification. I was just wondering about all the books I've read that reference diabetes.

Some books where a person with diabetes is one of the main characters, or diabetes plays a major part of the book:

GV 865. S26 A4 1993 Ron Santo: For Love of Ivy by Ron Santo and Randy Minkoff
about Ron Santo, the former baseball player who was diagnosed with diabetes at 18 and went on insulin at 20. He played for both the White Sox and the Cubs.
HV 1792 .F56 2003 ~ Long Time, No SeeBy Beth Finke
an autobiography of a woman who was diagnosed at age 7 and began to lose her sight at age 19.
RA 645 .D5 2003 +++ Bittersweet: Diabetes, Insulin, and the Transformation of an Illness
by Chris Feudtner
RC 660 .B37 1983 A Gift of Life
by Alfred W Beckler
diagnosed as a teen, Beckler received a kidney transplant from his brother when he was in his late twenties, got a partial pancreas from a sister, and when that failed was one of the first cadaver pancreas recipients.
RC 660 .B83 1999 + Showdown with Diabetes by Deb Butterfield
diagnosed as a preteen, Butterfield had a SPK transplant, the pancreas part failed, she got another one. One of the more vocal proponents of pancreas transplantation.
RC 660.4 2001 101 Tips For Simplifying Diabetes
RC 660.4 2009 The Fight to Survive: A Young Girl, Diabetes, and the Discovery of Insulin by Caroline Cox
I just reviewed this one.
RC 660.4 2006 + Cheating Destiny: Living with Diabetes by James Hirsch
This book is about diabetes generally but the author and his son are T1s.
RC 660.4 2009 Growing Up Again: Life, Lows, and Oh yeah, Diabetes by Mary Tyler Moore
Diagnosed T1 in her thirties with what was probably LADA, the spokeswoman of the JDRF talks about her life and her diabetes and complications.
RC 660.4 2006 When You're a Parent with Diabetes: A Real Life Guide to Staying Healthy While Raising a Family by Kathryn Gregorio Palmer
RC 660.4 1998 When Diabetes Hits Home by Wendy Satin Rappaport
A therapist writes about coping.
RC 660.4 1996 + Reflections on Diabetes: 39 Inspirational, Real-Life Stories On Living With Diabetes, A Diabetes Forecast Book by the American Diabetes Association
RC 660.4 1999 Sweet Invisible Body: Reflections on a Life with Diabetes by Lisa Roney
About living with diabetes, but really and mostly about her interpersonal relationships.
RC 660.4 2004 Think Like a Pancreas: A Practical Guide to Managing Diabetes With Insulin by Gary Scheiner
About managing diabetes by a diabetic who works managing people's diabetes. I didn't think much of this book, frankly.
RC 660.5 2001 I'm Tougher Than Diabetes by Alden R. Carter il Carol Shadis Carter
This is a kids book about a young girl with diabetes.
RJ 420 .D5 1998 Needles: A Memoir of Growing Up With Diabetes by Andie Dominick
The author and her older sister were diagnosed as kids. The sister dies of drug use.
RJ 420 .D5 2001 Real Life Parenting of Kids With Diabetes by Virginia Nasmyth Loy
RJ 420 .D5 2006 Diabetes: The Ultimate Teen Guide by Katherine J Moran
RJ 420 .D5 1998 Sugar Was My Best Food by Carol Antoinette Peacock, Adair Gregory and Kyle Carney Gregory il Mary Jones
I read this one a couple of weeks before I was diagnosed, which is part of why I was surprised to learn that I could eat candy with diabetes. But I like it anyways.

Some books where a character with diabetes is not a main character, or diabetes takes up at least one chapter

HQ 75.8 .D46 A3 2008 + Swish: My Quest to Become the Gayest Person Ever by Joel Derfner
a group of autobiographical essays by Joel Derfner, whose mother's type 1 diabetes, complications and death were a large part of his teen and young adult years. I cried when I read it.
HQ 773.6 .S58 2005 + The Sibling Slam Book: What It's Really Like to Have a Brother or Sister With Special Needs ed Don Meyer
a book by siblings of people with various issues, including diabetes.
HQ 801 2006 ++ I Know You're Out There: Private Longings, Public Humiliations, and Other Tales From the Personals by Michael Beaumier
the author's brother was diagnosed T1 at age 4, and is now a Chicago chef.
ND 237 1980/03 Ordinary Daylight: Portrait of an Artist Going Blind by Andrew Potok
a number of the people Potok meets who are also losing or have recently lost sight are diabetic and that features in one chapter, rather largely.
PZ 5 2008 Owning It: Stories About Teens With Disabilities ed Donald R Gallo this fiction collection includes a story about a blind diabetic teenager
R 729.5 .R87 2004 What Patients Taught Me: A Medical Student's Journey by Audrey Young
has a story about interacting with a type 2 diabetic in Africa
RB 155 Moalem 2007/08 + Survival of the Sickest: The Surprising Connections Between Disease and Longevity by Sharon Moalem and Jonathan Prince
has a chapter positing that diabetes was a survival advantage during the little ice age
RC 339.52 1984 A Leg To Stand On by Oliver Sacks
during his rehabilitation from a leg injury, Sacks meets and discusses the issues of diabetics with major neuropathy and amputations.
RC 480.515 .M8 2003 +++ The Mummy at the Dining Room Table: Eminent Therapists Reveal Their Most Unusual Cases by Jeffrey A Kottler and Jon Carlson
I loved this book, which has only a cursory mention of diabetes in that a few patients featured have it.
RC 620.5 1959 + Experiment Perilous: Physicians and Patients Facing the Unknown by Renee Fox
this book is more about Addison's disease but featured two (I think) patients who were also diabetic.
RC 630 2001 Real World Nursing Survival Guide: Fluids & Electrolytes by Cynthia Chernecky, Kathleen Murphy-Ende, and Denise Macklin
contains a bit about DKA management
RC 660 .L34 2004 Women and Autoimmune Disease: The Mysterious Ways Your Body Betrays Itself by Robert G Lahita with Ina Yalof
This book has a chapter on T1, but fails to mention that it is one of the autoimmune diseases more commonly found in men than women.
RD 120.7 2001 Coping with an Organ Transplant by Elizabeth Parr and Janet Mize
This book makes the laughable claim that those with diabetes know their blood sugar levels within ten point without testing, but it says lots of other things about pancreas and kidney transplants
RJ 380. K74 1989 How It Feels To Fight For Your Life by Jill Krementz
An anthology of stories by kids with various medical issues of which diabetes is probably the mildest

Some of the fiction books I've read with diabetic characters include
The Babysitter's Club books by Ann M Martin, in which Stacey is diabetic.
Sweetblood by Pete Hautman, who is himself a T1 diagnosed in adulthood, about a T1 teenager with interesting theories. I don't think the diabetes part of the book is realistic, oddly enough.
Beyond the Mango Tree by Amy Bronwen Zemser, which is a very odd book in which the main character's mother is T1 and crazy.
Tough Beans by Betty Bates about a boy with diabetes, way back when.
Going to the Sun, an adult book by James McManus, whose daughter is T1, in which the main character is a young woman who's been T1 since childhood and who is very depressed. I thought when I read it that the character commits suicide at the end of the book, although when I mentioned the book to a librarian, she said she once lead a book discussion about the book, because apparently the author is local, and the attendees were split as to whether or not the character actually commits suicide. In any case, I would be furious if my father had written this book.

Sunday, September 05, 2010

Disappointed With Dexcom

For three and a half days, the Dexcom was accurate and spot on. On the fourth night, I had hours of "???" during which time I went hypo and the Dexcom of course didn't alarm that I was hypo but it also didn't let me know that it wasn't checking me. On the Guardian, I would have gotten an alarm to let me know I wasn't getting readings.

In the AM, the readings started again, and I got readings all day, which I ate and bolused off of. In the evening, I checked my blood sugar: 104 vs Dexcom 178. I am not impressed. The Guardian never conked out on me in four days. Never ever.

I called Dexcom support this morning and they said they usually want people to wait for three hours of ??? before they replace a sensor, but that she could have them replace my sensor at that point. I said I'd wait and see.

The thing is, if most of the sensors were conking out at 4 days, then I'm not sure the money is worth it, so there'd be no point in them sending me another sensor, because I'd just be returning the Dexcom. Unless they're willing to keep replacing sensors that don't last? I dunno.

That I had a 104 in the evening suggests to me that it was pretty close during the day, because I ate about a gazillion uncovered carbs during the day on the advice of the Dexcom, which must've been right. But still...
I'm keeping this sensor in for now, and we'll see what happens.

Reflections on Diabetes

I just read another diabetes book, Reflections on Diabetes: 39 Inspirational Real-Life Stories On Living With Diabetes published by the ADA in 1996. It's short pieces (and a very small book) by diabetics (and people with diabetes) and family members, type 1 and type 2. It is very much a product of the time it was published, with a lot of the stories being about food restriction, and each of those stories having an italics comment from The Editors about how current guidelines recommend a diet tailored to lifestyle, and a sugar is a carb.
My favorite story is about a fisherman with neuropathy in his hands whose son helps him rig his fishing pole with a bobber so that he can see the fish bite 'cause he can't feel them, and this accommodation makes him a better fisher and people without neuropathy copy him. But I don't condone fishing, FYI.

One thing wearing the Dexcom is making me think about again is body image. I don't have much of a sense of what I look like- never have. I'm not sure if this is because of being dysphoric in a gender kind of way, or if it is more autism related.
But anyways, when I was diagnosed with diabetes, and particularly the morning after, I looked at myself and looked and it bothered me that something so important about my body didn't show. Maybe it was my concrete thinking showing, but I kept wondering, WHERE is my diabetes? I kept wondering, could I really be diabetic if I couldn't see the diabetes? (This probably explains why I still wonder if I'm really autistic). After some time, I was relieved to locate it in my fingers, which were and are scarred from blood sugar checks.
Wearing the I-Port, and later on the Guardian, as well as the dummy solo, were cool to me beyond their actual purposes in that they located diabetes on my body. However, the I-Port and Guardian sensors as well as sticking out on my body, hurt. All the time. I never could forget that they were there, and after one would come off, I would continue thinking that I needed to be careful not to jostle that area for some days. They became, quickly, part of how I expected my body to feel.

The Dexcom is different. I still love looking and seeing my diabetes, right there on my arm, as well as on the screen. But I don't feel it. I keep thinking it's on my other arm, that's how much I can't feel it. I run my hands up my arms checking to see where it is. I lie on top of it and don't know until I'm on my side that I lay on the wrong side. Which I guess confirms that I really do have trouble with right and left. Because even though I know I put it on the left side, I don't know until I go feeling for it which side is left.

If anybody is reading this far, I have some questions.
1. I'm not using Windows on this computer. It would probably be a hassle to get to a computer with Windows with which I can access the Dexcom software and/or to install a Windows imitator to run the software. What would I get from an upload? Is this hassle worth the bother?
2. How long will the Dexcom let me go between calibrations without stopping to display readings?
3. Will wearing a sensor on one's stomach interact with stomach pain, pancreatits, gallstones, digestion, and/or gastroparesis?

Wednesday, September 01, 2010


On Tuesday I came home expecting to find the Dexcom and instead found a note from Fedex that they'd come and nobody was home. My father and brother say that they didn't hear the bell ring.
Today I went to the Fedex place just after 8, and just after my package left. At noon I heard the door to the foyer open and close, but the bell didn't ring. When I went out to investigate, I found a big box, addressed to me. I opened the door and saw the Fedex truck leaving.
I got the receiver charged, and was pleasantly surprised after a couple of hours to find that all three bars were shaded when I unplugged it. With my mother's assistance, we inserted a sensor into my left arm. We had a lot of difficulty with clicking the transmitter into place, and with removing the latch. That said, the insertion was a gazillion times less painful than I remember Guardian sensor insertions being. And so far, the wearing of the sensor has not been really painful. Not painless, really, but so much less pain that it's comparatively painless.

I calibrated the Dexcom at 5 PM. Around 6 PM, when it showed my blood sugar as having dropped a hundred points, I checked my blood sugar again; my meter read 95 to Dexcom's 96. So I decided to go off the Dexcom for the rest of the evening; I'll check it again soon.

P.S. No sooner had I published this than I saw my first transmitter out of range. BOO! I only missed one reading, and it is back.