Diabetes Conversations Bingo Card

I was reading another post about a family member who doggedly refused to believe that type 1 diabetes could not be cured by any means without major side effects. Now, I don't have any family members like that myself. My mother does have a schizophrenic friend who in one of her not so good moods starting yelling at me for not drinking mango juice because then I wouldn't have diabetes. But having a person who everybody accepts is crazy tell you something rude is really different socially from having somebody you accept to support you be unsupportive.

Anyways, you can copy paste and fill in if you really want to, otherwise just imagine it and chuckle. I'm using second person pronouns but if you are a parent or spouse you can change them in your head or on your computer.

Some of these are not bad questions really, especially the ones children ask, but they still get annoying.

Oh! For those unfamiliar with the rules, here's how it goes. You get a bingo card with this stuff, and then you carry it around, say at the family holiday party or even at the hospital, and you fill in a square each time somebody says this to you.

And I don't know why blogger sticks in a bunch of empty lines between my text and tables.

Is it the bad kind?	I could never do that!	At least it's not...	You can't eat...	At least it's controllable.
So, which of your parents has it?	I heard about a cure in...	So what's the prognosis?	Will it go away?	You must have some sweet tooth!
How bad is it?	My grandma has that!	FREE SPACE	My ____ died from it, but they didn't take care of themselves	You must have lost a lot of weight!
That's not so bad.	Does it hurt?	I'm glad I don't have it.	Is it catching?	Was it from vaccines?
Were you born with it?	Eww! That's disgusting!	God gives trials to strong people.	There's no diabetes in MY family	Can you die from it?

Pop Quiz- Diabetes Trivia

If you were reading this closely in November, you should know all the answers! Some questions have multiple answers:

1. Which of the following types of insulin is no longer for sale in the United States?
a: Human Insulin
b: Pork Insulin
c: Trout Insulin
d: Beef Insulin
e: E Coli Insulin

2.Which of the following forms of insulin is no longer for sale in the United States?
a: Eye drops
b: Pills
c: Liquid for drinking
d: Liquid for injection
e: Inhalable

3.Insulin is produced by the normal human pancreas in what frequency:
a: After eating
b: Before and after eating
c: all the time, continuously
d: in pulses every three to six minutes
e: when the owner of the pancreas exercises
4. Which of the following baseball greats had type 1 diabetes?
a: Ron Santo
b: Mickey Mantle
c: Jackie Robinson
d: Lou Gherig
e: Babe Ruth

5. Normal blood sugar for human beings is about 65 mg/dl to 125 mg/dl. What is the highest recorded blood sugar in a living human?
a: 560,000 mg/dl
b: 56, 000 mg/dl
c: 5, 600 mg/dl
d: 560 mg/dl
e: 56 mg/dl

6. Which of the following are treatments for hypoglycemia?
a: epipen
b: insulin
c: candy
d: IV Dextrose
e: glucagon

7. The pancreas produces:
a: insulin
b: glucagon
c: amylase
d: lipase
e: bilirubin

8. Which of the following are risk factors for type 1 diabetes?
a: male sex
b: female sex
c: less than 40 years old
d: breastfed
e: family history

9. More than half of people with diabetes die from....
a: complications of high blood sugar
b: complications of low blood sugar
c: heart disease
d: kidney disease
e: non-diabetes related causes

10. Which of these conditions are more common in people with type 1 diabetes?
a: celiac
b: Hashimoto's
c: Down Syndrome
d: breast cancer
e: early onset dementia

11. A pancreas transplant is one of the few ways a type 1 diabetic can go off insulin. Most are performed:
a: at the same time as a liver transplant
b: at the same time as a kidney transplant
c: after a liver transplant
d: after a kidney transplant
e: without another transplant

12. One unit of insulin refers to:
a: the amount necessary to lower a 180 lb man's blood sugar by 50 mg/dl
b: the amount necessary to lower an average rabbit's blood sugar by 50 mg/dl
c: 1/100th of an mL
d: 1/22nd of an mg of pure crystalline insulin
e: 1/52nd of an mg of pure crystalline insulin

13. Which of the following supreme court justices has type 1 diabetes?
a: Samuel Alito
b: Elena Kagan
c: Sonia Sotomayor
d: Antonin Scalia
e: Clarence Thomas

14. Insulin...
a: moves sugar out of the blood and into muscles
b: moves sugar out of the liver and into the blood
c: signals the alpha cells to make glucagon
d: signals the alpha cells to stop making glucagon
e: is a hormone

15. How many types of type 1 diabetes are there?
a: two types- brittle and controlled
b: two types - 1A and 1B.
c: trick question- there is only one type 1 diabetes
d: six types, one for each diabetes antibody
e: come on man, what's a type of diabetes?

16. If you have good diabetes numeracy skills, that means you can:
a: count carbs
b: read a nutrition label
c: read the insert that comes with your insulin
d: calculate a correction dose
e: convert mg/dl to mmmol/L

17. Fiber is...
a: a type of carbohydrate that cannot be digested
b: a type of carbohydrate that digests more slowly
c: all carbohydrates that do not turn into sugar
d: a protein that sometimes turns into a carbohydrate
e: good for all diabetics

18. How good is worldwide access to diabetes supplies?
a: the majority of diabetics do not have access to a regular supply of insulin and syringes
b: almost all diabetics have access to insulin and syringes, but more than a million don't have test strips
c: almost all diabetics have access to insulin, syringes, and test strips, but over a million cannot use CGMs
d: almost all diabetics have access to insulin, syringes, test strips, but over a million cannot pump
e: almost all diabetics have access to insulin, syringes, and test strips, but over a million have no access to an endocrinologist

19. Which type of diabetes has a genetic basis?
a: type 1A diabetes
b: type 1B diabetes
c: LADA diabetes
d: MODY diabetes
e: type 2 diabetes

20. Which of the following cannot get diabetes?
a: Horses
b: Dogs
c: Cats
d: Parakeets
e: Computers

21. Can people with diagnosed with type 1 diabetes ever stop taking insulin?
a: No, never.
b: Yes, if they get a pancreas transplant
c: Yes, if they get an islet cell transplant
d: Yes, if they get a liver transplant
e: Yes, if they were misdiagnosed

22. Which of the following authors has type 1 diabetes?
a: Daniel Pinkwater, author of the Werewolf Club series, among others
b: Anne Rice, author of various vampire novels
c: Terry Pratchett, author of the disc world series
d: Piers Anthony, author of the Xanth series
e: Stephen King, horror writer

23. Which of these diseases can cause diabetes?
a: Lou Gherig's Disease
b: Muscular dystrophy
c: Cystic fibrosis
d: Tourette's
e: Turner Syndrome

24. Type 1 AKA juvenile diabetes is commonly developed...
a: at birth. People are born with type 1 diabetes
b: soon after birth. It's genetic.
c: in childhood, by the age of 18.
d: in young adulthood, between ages 18 and 35.
e: after the age of 65

25. What kind of diet are diabetics on?
a: They can eat anything.
b: They can eat anything but poison. And cookies... made with poison.
c: Low carbohydrate.
d: Low fat.
e: Low fiber.

Answers in comments.

An Interview With My Brother, The Tree Tracks

The Interview

Jonah: What do you want my readers to know about you?

Tree: That I love them.

Jonah: Ok.

Tree: In a completely non-hippie way.

Jonah: What has been the worst part of having a sibling with diabetes?

Tree: Parents getting worried about things.

Jonah: Worried how?

Tree: Uh uhhh. (that's a verbal shrug)

Jonah: Okay.

Jonah: Has there been anything positive for you about having a sibling with diabetes?

Tree: Probably. (Exhales loudly.)

Jonah: Like what?

Tree: Let's see. What is positive about having a sibling with diabetes, hmm..
Well I know things about diabetes now, and...
Hold on.
I guess in a way it's kind of nice to have a reminder about how life is all a gift and you gotta do what you can with it and be thankful for what you have and what you don't have.
And your health especially is not... you can do what you want with this factor or with that... but in the end it's up to to the Master of the Universe, the Master Healer regarding your health. And things like that. And everything else.

Jonah: How often do you think about diabetes?

Tree: Very rarely. That's not... Diabetes specifically, or? Specify your question. How often do I think about diabetes, or how often do I think that diabetes should not bother you?

Jonah: Anything related to diabetes.

Tree: About diabetes in general, I don't think about at all. About you and diabetes is a personal question between me and God and not public business, I guess.

Jonah: Does that mean I should erase that answer?

Tree: No, you can have that answer but I can't, um, my answer is that I can't, I'm not going to answer.

Jonah: What would you say to somebody who had just had a family member diagnosed with diabetes?

Tree: That depends on the person. It's a very vague question. Um. I mean. It depends what's the person's relationship with the person with diabetes, what's the person's attitude towards health and various things. I guess the generic answer would be, "I'm sorry to hear that."

Jonah: Anything else?

Tree shrugs.

Jonah: Okay. Thanks.

Tree: Glad I could help.

I'm still sick but right now it seems more like normal people sick, just complicated by me having my issues. It bothers me a bit that my white blood cell count wasn't elevated- maybe it ought to be, if I'm having lots of vomit and diarrhea?- but that doesn't really seem like a major concern to me.
My oldest brother is on his way home from college- like he's on the bus which is currently a little over three miles away (I'm tracking it on ctabustracker.com) and so I'll probably have another interview for you soon.
I'm applying for a homeshare program, in which I'd be matched with an elderly person who wants to age in place and needs a little help around the house, which I'd provide in return for reduced rent (the coordinator of the program said I'd be paying three to five hundred per month, and living in one of the more desirable neighborhoods of Chicago). I'm hoping this would be a good transition to living on my own. Of course, I need to talk to insurance and see if I can stay on my parents' insurance if I do this.

Heap of Junk!

My bloodwork from Wednesday all came back normal.

Except.

My blood sugar. Which was 62, apparently. The funny thing is, I checked my blood sugar on my meter three minutes before the appointment. The meter said 86.

In September I saw a different doctor about other things and I had a tremor during the appointment. I pointed it out, and suggested it might be my thyroid. On the bloodwork, the only abnormal result was... my blood sugar. Which was low. Ooops.

My Dexcom average hasn't gone under 130. My meter average is somewhere in the 150s. My A1cs in November and December were 6.1 and 6.2, suggesting an average of about 125.

Now, I've been managing diabetes and using blood sugar meters for over 51 months at this point. I am aware that I am using one of the best meters on the market in terms of accuracy and consistency. And from my checking twice for calibrations, as well as at other times, I have a pretty good sense of the consistency of my meter. For numbers above 200, a retest is almost always within 5% if my hands are clean. For numbers below 100, a retest is almost always within 5 mg/dl, but not necessarily 5%. The point is though- my meter is consistent.
But in 2007, when I consistently asked my doctors to tell me what the blood sugar was when they were doing CBCs, and would check on my meter right before or after the blood draw, I found that that, if the blood draw was accurate, then my meter... was not.

I know people compare the meter to the blood draw but frankly I don't think it's the meters that go back, just test strips. I mean, seriously, what in the meter is going to go bad? It's the test strips. It's also that it seems to me that if a meter is inaccurate inconsistently, sometimes it's accurate. And it's not the that the meter is necessarily going to do better on the next test- it's just lucky sometimes.

I also know people who think the meters are totally worthless due to inaccuracy. I do not feel this way. I cannot feel my highs or lows dependably. I can't tell them apart from each other either. My meter, inaccurate as it is, makes much more accurate guesses about my blood sugar than I do. If my blood sugar is 400, my meter doesn't guess that it's 40- that would be me. In fact, if my blood sugar is truly below 70, I can depend on my meter to read below about 100. And yes- that is not the accuracy I want. But it's a lot better than I can do on my own.

I am wondering right now if I should simply assume my blood sugar is 10% or so higher than the meter says. The Dexcom inaccuracy could simply be because, as I've already noted, it has a strong tendency to exaggerate my highs, or if it's because I'm calibrating with an inaccurate meter. I don't know. I do know that when I used a One Touch, I got results that were way far apart when I'd test twice in a row, much further apart then I get from two consecutive tests on the Aviva.
P.S. I meant to write that maybe I should assume I'm 10% lower than what the meter says.

Do You Know Your Diabetic's Antibody Status?

I've read a number of studies about the somewhat different prognoses for people with a diagnosis of type 1 diabetes who have different antibody statuses. For instance, a longer honeymoon is associated with being positive for fewer antibodies. Lower A1cs are associated with being antibody negative. A higher recurrence risk (risk of a family member being diagnosed) is associated with antibody negative type 1 diabetes. And certain antibodies are more associated with certain genes.

Because of the age at which I was diagnosed- 17 years old- as well as because of who all was involved in my diagnosis, I was antibody tested at diagnosis. That is why I can tell you with a high degree of certainty that I have autoimmune diabetes.

But many people who are diagnosed with diabetes are diagnosed by doctors who feel certain of the diabetes type and never test.

In this study I read recently, participants were tested for five diabetes antibodies- the more antibodies tested, the better the chance of finding everybody who's positive for at least one.

More commonly people are only tested for three or four. The ones done most often are the ones I was positive for- the GAD and ICA 512. The ZnT8 I've heard good things about but seems to be too new of a test. Insulin antibodies sometimes turn positive from people having diabetes.

I was tested by both of the hospitals I was at at diagnosis for the same three antibodies.
The results were:

ICA 512 at hospital 1 was 0.952 with normal being less than 0.070.
ICA 512 at hospital 2 was 46.8 u/ml with normal being less than 0.8 u/ml.
I consider this the antibody that caused my diabetes. ICA 512 is most commonly found in younger people dx'd with type 1 diabetes.

Insulin antibody at both hospitals was undetectable.

GAD 65 at hospital 1 was 0.058 with normal being less than 0.050.
GAD 65 at hospital 2 was 4.1 U/mL with normal being 1.0 or less.
GAD-65 is the most common antibody in older people dx'd with type 1. It is frequently found in cases of LADA. As you can see, my levels of this antibody were only somewhat high.

I did have what I guess was a slow onset, but I was not dx'd early by any means.

How about you or your family member? Were you or they tested at diagnosis? What antibodies were you tested for, and what were the results? Did they have a honeymoon?

No More Leg Sites

On Wednesday the sensor went to ??? and after seven hours, gave up. I decided not to demand a replacement sensor from the company even though I only wore it for five days.

I had been planning to put the next sensor in my abdomen, but I think the odds of me needing a doctor to be able to feel my whole stomach, or ultrasound it, or whatever, are too high for that. So it's in my arm. There wasn't really enough fat on my arm for the sensor- I've lost weight and have no fat, plus want to avoid putting it right where I put it last time- but I did my best.

I didn't eat much on Sunday due to being in agony. I didn't eat much on Monday due to pain. I didn't eat much on Tuesday due to pain. I ate just a little less than normal on Wednesday. I went to sleep Wednesday night feeling fine. I woke up at 2 AM in extreme agony and threw up my entire supper about half an hour later. I've also been having the runs starting this morning. So now it's Thursday and I'm drinking pediatric electrolyte and eating freezer pops.
Wanna bet I'm losing weight?

I saw the endo yesterday. He drew two tubes of blood, for a CBC and a liver panel. He got blood on the first try but it hurt extra because it was near where I had blood drawn last time and I guess the area was already a little bruised. He said he'd try to get back to me today with the results, plus a referral to a GI doctor. He said he wanted to think about which GI doctor would be the best one for me to see. I hope he picks well.

I'm Being a Stupid Sillyhead, and I Know It

I have yet to see a negative urine ketone since I started testing every time I peed, on Sunday. My blood ketones are up to 0.9. My blood sugar comes down but then keeps zooming back up up up to the three or four hundreds. I feel okay- not great, but not bad. I decided not to talk to my doctor because I strongly suspect he'd say to go to the hospital. Instead I made an appointment for tomorrow morning.

I know I'm in the gray zone and better safe than sorry and all that... but I don't WANNA be sickkkkkkkkkkkkkk. Sorry, I'm whining even in my own head. It's just, when I'm in pain, going to the hospital has a big appeal- maybe they'll make me feel better. But I feel okay! I don't need to feel better. Anyway. I'm hoping that, as long as things don't get worse, having bloodwork tomorrow will be soon enough to tell if there's a problem with my potassium levels, which is what I'm most worried about, and that also talking to the doctor will help me figure out how to manage my blood sugar for however long this lasts. Probably I need to go over sick day management 101 anyways. Whine, grumble, groan. Sorry!

Sick Day- Not for the Queasy

Yesterday just past 11 AM I got the abdominal agonies. Ow, ow, ow, ow, ow, ow. I attempted to go about my business through the day, though not very successfully.

About a quarter after 9 PM, I threw up (through my mouth AND NOSE!) about a cup and a half of grayish stuff sort of tinted green. I then felt lots better, which was so wonderful I started sing-songing about it. My mother looked at the vomit and concluded it was mostly bile.

Here is how I managed, diabetes wise. My blood sugar was dropping when the pain set in, which was no good. When it got below 90, I ate a mint (5g carbs). My blood sugar started rising. It rose at a rate of about 50 mg/dl/hour until it was over 300. At that point I took 2 1/2 units of insulin. That prevented much further rise but brought no decrease in blood sugar. After an hour and a half, I took another unit and a half of insulin.
A little later, I finally managed to pee and peed on a urine ketone strip, which showed moderate-to-large ketones. Uh oh!
A bit after that, I took 4 units of insulin and drank some pediatric electrolyte stuff. Not much, 'cause it REALLY HURT to drink.
I tested my urine ketones again about two hours later and they were moderate-maybe-small. I was leaving the bathroom when I got a feeling that I was going to throw up, and ran to my room, where I always have a bucket for just this situation, and then I threw up again and again and again.
After rinsing out my mouth, I drank some more pediatric electrolyte, took some more Novolog, took a unit less of Lantus than I had the previous evening, took a bath, and went to bed.

This morning, my urine ketones were moderate-to-small, but I was hopeful that that was showing a huge time lag. I tested blood ketones (my mother went to Walgreens and got a Nova Max meter with two sample strips for $20) and they came in at 0.3, which is normal. I haven't called the doctor yet.
I'm really sore and in some pain but not in agony, and extremely grateful for how well I feel.

My gall bladder was removed on April 22, 2009, but it helped with my abdominal agonies only temporarily, and not that much. On March 16, 2010, I had an endoscopic sphincterotomy (with removal of stones from the pancreas and common bile duct), which helped a lot- but again, it seems to have been only temporary.

I suspect that I have an underlying fat malabsorption issue that contributes to the development of gallstones, and/or that the gallstones over the years have done enough damage to my internal organs and specifically my liver and pancreas, to have impaired my fat absorption.
My father has felt sick from eating fat all his life, and eats a low fat diet. Like me, he has cholesterol levels below the normal range. I have wondered if maybe he and I have a genetic condition affection cholesterol.

Although gallstones are a fairly common ailment, a number of things about how I've had them is not common. First of all, I developed this pain as a preteen- not common- and had my gall bladder removed at age 20- average age for gall bladder removal is over 65. Then I had gall stone pancreatitis- not common- almost a year AFTER having the gall bladder removed- not common. I also had worse gall bladder disease than most- I had multiple adhesions, a shrunken gall bladder, and one that displayed a wall echo shadow complex on ultrasound. And I have none of the big risk factors- no family history, no pregnancy, not fat, young, etc.


Off topic- my endo left a message on Sunday. There was a miscommunication with the lab and they haven't tested my vitamin D levels. My doctor was hoping they would, which is why he hadn't called. He says he's sorry. My A1c came in at 6.2%, hooray! My urine and metabolic profile were normal.

Data on Sensors

I spent a long time trying to stylize and post Dexcom data, and that failed. I had it all colored and commented on- it seems to have posted without my revisions. The point I wanted to make was actually about sensors. I have now finished two boxes of sensors and am on my 9th sensor. Here's what happened to the first 8:

Sensor 1: Sept 1-Sept 17, approximately 16 days. I wore it in my left arm, and pulled it partly because it was getting itchy, partly 'cause it was erev Yom Kippur. Its performance was getting worse but it was still functioning well at that point.
Total number of readings it gave: 4384

Sensor 2: Sept 19- Oct 2, approximately 14 days. Wore it on left side of abdomen. Its performance wasn't ever great though after the first couple of days it was pretty good, and I believe it actually failed before I pulled it.
Total number of readings it gave: 3343

Sensor 3: Oct 2- Oct 4, less than two days. Put it in my left leg and it ripped out. It hadn't been performing that well, but then, it was still early days.
Total readings it gave: between 198 and 213

Sensor 4: Oct 4- Oct 14, ten days. Another one in left leg. Pulled it 'cause it failed. Functioned well for one week, but really didn't rally for a restart.
Total readings it gave: 1650 give or take 20.

Sensor 5: Oct 14- Nov 4, twenty one days. Wore it in left arm. Was still functioning really well when I pulled it.
Total readings it gave: 5700 give or take 20.

Sensor 6: Nov 4- Nov 20, about 16 days. Wore it in left side of abdomen. I don't remember why I pulled it.
Total readings: 4236 give or take 50.

Sensor 7: Nov 20- Nov 22, a little over 2 days. Wore it right leg. Was working excellently when I ripped it out. I had way too much hair under the adhesive and it didn't really stick well.
Total readings: 455, give or take 10.

Sensor 8: Nov 23- December 10, about 17 days in right arm. Was working okay but kinda itching when I pulled it. Skin underneath really looks beat up.
Total readings: at least 3500- don't have full data for this sensor.

Number of readings from a sensor if you it for the 1 week it is approved for and got 285 readings per day, minus 2 hours warm up: 1971.
I beat that 1971 on 5 out of 8 sensors- all the ones worn in either the abdomen or arm- and doubled that number for at least 3 (probably sensor 8 as well) out of 8 sensors. I came close to trebling that on sensor 5.

Sensor 9 is in my right leg as of yesterday and is doing fine. If this one doesn't do well, then it will be the last sensor I wear on my legs.

Another data set:
41 days had 280 or more readings, of which two had no missed readings- 288 in a day.
12 days had 272-279 readings.
17 days had 252-269 readings. So a total of 70/96 days had 252 or more readings.
8 days had 201- 246 readings. So 78 days had at least 201 readings.
11 days had 124-198 readings. So 89 days had at least 124 readings.
5 days had 15-98 readings. So 94 days had readings.
2 days had no readings. On one of them, I wasn't wearing a sensor. On another day, I was wearing a sensor that I would have pulled, only my next box was still in the mail. Oddly enough, it restarted the next day and worked.