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.

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.

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?

Dexcom!

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.

The Fight To Survive by Caroline Cox

Every now and then I go to the library's online catalogue and I search "diabetes biography". This brings up about 20 books, including biographies of ten people (nine diabetic): Mary Tyler Moore, Frederick Banting, Ron Santo, Deb Butterfield, Zippora Karz, Nicole Johnson, Denise Bradley, Andie Dominick, Lisa Roney, and Elizabeth Hughes.

Now, all nine of these people were diagnosed long before I was, but Elizabeth Hughes was diagnosed long before anybody reading this blog was. Elizabeth Hughes was diagnosed with diabetes in 1919, when she was eleven years old. In 1919, you couldn't get a prescription for insulin. You couldn't get in a research trial and be given insulin. In fact, you plain old couldn't get insulin, unless you made it with your own damn pancreas.

Which is what she did. Using the method of eating until you peed sugar, then not eating until you didn't, she lived on the insulin she made herself, growing smaller and smaller, weaker and weaker, until she went on insulin in 1922.

I checked out The Fight to Survive: A Young Girl, Diabetes, and the Discovery of Insulin by Caroline Cox a week ago and read it through pretty quickly. I wanted to read a book about diabetes that was different. I wanted a book to make me want to celebrate injectable insulin (four years, whoop!). I wanted a book that wasn't about a celebrity or a role model.

This book is about a celebrity though; just not a celebrity of of the twenty first century. Elizabeth Hughes's father ran for president on the Republican ticket and was also a supreme court judge. During the years of her illness, her family was rich enough to hire a personal nurse for her, and they sent her to Toronto to go on insulin. And while this book doesn't really attempt inspiration, particularly not "living with diabetes inspiration", it is an attempt to understand how a preteen and teenage girl starved herself despite not being anorexic. How she managed to enjoy life in some sense at that time.

But I liked it. I liked the way that this book talks about the discoverers of insulin. Their story is told in little snippets parallel to Elizabeth's and while at first it was losing me in biographical detail, soon the details (juicy!) had me taking notes. Did you know that Banting was alcoholic? Did you know that after producing insulin and injecting it in a few patients, they had to stop because they didn't remember how to make more? And I liked Elizabeth herself, despite the fact that her experience did not have much to do with mine, as she didn't really have a lot of diabetes symptoms other than sugar in her urine. This book is really only about those years which she later wanted to forget (I can imagine wanting to put starvation behind you!). I didn't like the bits in which Cox attempts to look at the current diabetes situation, and I believe that her mortality statistics contradict what I read elsewhere. But that's not the book.

This is a book about living with diabetes without insulin. This is a book about heroes who did not behave heroically. I recommend this book because it will challenge your ideas of the history of diabetes.

On Thursday I visited the endo, and got weighed and had blood drawn and talked and had my feet checked (still having problems feeling vibrations). My weight is 101 lb, which represents no real change over the summer. My vitamin B12 level (which I had drawn because I am a vegan) was in the mid normal range. My vitamin D came down from 97 to 32.6; I suppose we can retest in a few months. The celiac stuff was all normal. The A1c came in at 6.6%. I decided to look at my A1c history. Here it is in a graph: http://nces.ed.gov/nceskids/createagraph/default.aspx?ID=43046429fea34dd08eb29bc32c254686

FedEx says my Dexcom is currently in Memphis. I am impatiently awaiting its arrival!

I called Minimed and a replacement receiver is 550, a replacement transmitter is 649. If you are a previous Guardian user, getting a new receiver and transmitter is 1199 dollars. If you then bought a box of four sensors, you'd be at the 1344 cited as the price of start up. But you could buy only 10 pack boxes.
I think I'm going with Dexcom anyways. I want less pain.

I talked it over with my mother. She thinks I should have my thyroid function retested, as I have a history of thyroiditis and thyroid dysfunction can mess up blood sugar. She agreed that, at least if this continues, she's willing to help pay for a CGMS for me.

So I'm thinking about whether I should go in soon to see the endo for a TSH. Maybe. I'm overdue to see my other doctor anyways, so maybe I'll ask her to run a TSH even though it's always been my endo who's done that.

Guardian v Dexcom

I have had nutsy blood sugar in the past month, details below. I'm therefore thinking about buying a CGMS out of pocket again. My last experience, in 2008, was with the Guardian. I found it accurate for at least a week per sensor, all sensors I wore in the arm, but continuously painful and itchy. I lost the transmitter and decided not to get another. I still have some sensors, now expired. Anyways.

I'm looking at the Dexcom Seven Plus. I spent a couple hours reading about it today, plus I called customer service. Sales there says I can buy a starter pack and a box of four sensors now for the price of 999 dollars if I pay out of pocket. A box of 4 sensors is 319 dollars unless I agree to buy six or more boxes in a 12 month period, in which case it's 289 dollars per box. The transmitter and receiver each have 12 month warrantees.
So for one year, if I used 28 Dexcom sensors, the total cost would be 2733 dollars.
But if I had to use 36 Dexcom sensors, the cost would be 3311 dollars.

If I went with the Guardian again, then as I remember it startup cost is 1344 dollars and that includes 4 sensors (despite what the internet says). A box of 10 sensors is 350 dollars. The receiver is warranteed for twelve months, but the transmitter only for six months. I forget the replacement cost for the transmitter; either it's 450 or 650 dollars. So if it's 450 and I had to replace it, and I used 34 Minimed sensors, the total cost over one year would be 2844 dollars.
If I needed 44 sensors, the total cost would only grow to 3194 dollars.

Now, I've used the Guardian before so I'm pretty sure I really could stretch 34 sensors over a whole year. I've never used the Dexcom so I don't know how long I could get out of one of their sensors, which is one of the things making me hesitate. Some other thoughts:

The Dexcom only needs to be recharged, and doesn't need batteries. This would probably be a savings of over 100 dollars over the course of a year of full time use.

The Dexcom people charge shipping and handling, which I hear can add up to 15 dollars per shipment. That could add up quick.

I hated dealing with Minimed customer service. Although they replaced the receiver twice, they were horrible with my financial transactions and with talking to insurance.

I hated the feeling of wearing the Minimed sensors and I hope the Dexcom ones would feel less painful.

I loved the data analysis, graphing, and predictive alarm features on the Guardian. I also loved that the screen stayed on. The Dexcom has none of these features. Even worse, the Dexcom has a low alarm that can't be turned off. This would make continuing to use the sensor as it fails probably worse because it reads a little low as it goes bad, and I could accommodate for that if I could turn off the alarms.

Dexcom users can't use tylenol. Probably not a big deal as I don't use tylenol.

The dexcom transmitter doesn't store data and you're not supposed to go swimming with it for more than 30 minutes. I don't go swimming often... but sometimes.

The shape of the dexcom makes buying additional tape to keep it down less likely to be necessary.



I went on a road trip in early June for a week and my Lantus needs went down.
I came home and my Lantus needs rose back to 8 units per day or so.
I left again after two weeks, and on the road I achieved steadyish overnight blood sugar with Lantus doses of 4-6 units.
I got home and my wake up numbers climbed. I took 8 units, 9 units, 10 units.
I woke up in the 200s, 300s, 300s, and more 300s.
I opened a new vial of Lantus.
I still woke up in the 300s. Not only that, but my daytime numbers kept rising out of nowhere, no food on board, 300s and 300s and I took 20 units of Novolog last night when my suppertime number was 316. I ate about 30 cabs (my usual ratio is 1:8, so that means I ate for about four units). I kept checking to see if I'd come down, but all I got down to was 180.

Well, finally I just rage basaled and took 15 units of Lantus last night. I woke up with a blood sugar of 75. But after breakfast I was up at 302. Hoping it would come down, I didn't correct; at 11 AM it was 324. I took 6 units of Novolog. At 12:30 it was down to 296. I left it alone. At 2:30 it was 90. At 2:50 it was 54. I ate 24 carbs of granola bar. At 3:25 it was 52. I ate a muffin and put lots of honey on top, then walked home, a distance of about a mile and a half. At 3:50 I was 132. At 4:50 I was 192 and I took 2 units. At 7:00, I was 232.

Update

In my February visit with the endo, I gave a urine sample for microalbuminuria testing, and asked not to be told the results. I'm really glad I asked that. Because at yesterday's visit, I learned that February's test had been macroalbuminuric. Fortunately, yesterday's urine sample was totally normal, and I didn't have that much time to freak out.

My blood sugar's been an unholy mess lately and my 7 day average at one point was something like 179, which is the highest it had been in three and a half years. But my A1c didn't budge from February, at 7.0%.
My meter had read 145 right before the blood draw; the lab said 138. Good enough.

My vitamin D level skyrocketed above the normal range and I'm supposed to stop taking the vitamin D supplements and come back in another month.

I haven't gained any weight over the last few months, but I haven't lost any either, so that's okay. My appetite is not very good, but I guess there are worse things. My pain levels are way down; I haven't been woken by pain in forever (though I have been woken by hypos and am wondering if nocturnal hypoglycemia could've caused the lower A1c), I haven't had to stop working because of pain... I have no cause for complaint. I do have soreness and tenderness in my abdomen, particularly over my pancreas, and I have a persistent pain in my lower back on the left side. I'm also having squeezing headaches. But I haven't fallen. I took my pulse for a full minute each time about twenty five times over the course of a week and found that my pulse was anywhere from 48 to 81, but usually 55-65. At bedtime it was in the 50s but in the daytime it tended to be in the 60s, and when I was waiting in my therapist's office, it was 81.

So, I think I was even sicker than I realized before the gallstones were removed, and I am on the mend.

Oh, and I did send in paperwork for a CGMS but Dexcom lost it and then I couldn't find the forms I'd filled out (and had my endo fill out) so I decided to just not worry about it for now.