diadactic

Adult Nonfiction Book Favorites

2009-09-13T15:40:00Z

This is not really a diabetes post. Here are some favorite nonfiction books I've read over the last few years. These are the books that came to mind as my favorites today; if I were to compile the list tomorow it would look different. All of these books are favorites both because they are well written and compelling reads as well as because they are relevant to my understanding of myself and the world around me.

Reading The Lines: A Fresh Look At the Hebrew Bible by Pamela Tamarkin Reiss (2002)- This book contains exegesis of five parts of the bible, written by a nonreligious Jewish woman with an attempt to see the bible as coming from God.

Silent Night: The Story of the World War I Christmas Truce by Stanley Weintraub (2001)- Did you know that soldiers in WWI refused to fight? True story.

They Came in Chains: Americans From Africa by J. Saunders Redding (1950)- Well worth reading, a comprehensive history of slavery and race relations in the Americas from the 17th through the early 20th centuries. The author is African American.

A Sense of the World: How a Blind Man Became the World's Greatest Traveler by Jason Roberts (2007) - This book is just fun and easy reading- would be good if it were fiction. It's about an early 19th century British man who went all around the globe. He developed arthritis at age 12 and became suddenly blind at age 20- probably from JRA. He learned to get around by echolocation. He wrote guidebooks. Very interesting.

Slave in a Box: The Strange Career of Aunt Jemima by M.M.Manring (1998)- The story of the Aunt Jemima advertisement scheme, with a lot of background. Fascinating. I once did a report on this in class- got an A.

Queer Science: The Use and Abuse of Research into Homosexuality by Simon LeVay (1996)- Slightly out of date by this point, but a useful primer into research on homosexuality.

I Know You're Out There: Private Longings, Public Humiliations, and Other Tales From the Personals by Michael Beaumier (2006)- This book showcases a lot of the subcultures that I live in. It's Chicago. It's queer and it's straight, it's disabled and non. It's even got a diabetic chef. Funny and fun reading.

Blind Rage: Letters to Helen Keller by Georgina Kleege (2006)- 40% real Helen Keller, 10% fictional Helen Keller, 20% political thoughts, and 30% autobiography, this book makes a 100% good read.

Too Late To Die Young: Nearly True Tales From a Life by Harriet McBryde Johnson (2005)- Harriet McBryde Johnson was one of the best influence my disabled teenage self got. She's the one who organized protests of the MDA telethon. She died fifteen months ago. I cried. This book is a series of essays that are about things she did, including some available online.

Anatomy of the Law by Lon Luvois Fuller (1968)- The best introduction to law that I've read yet.

The Earth Moved: On the Remarkable Achievements of the Earthworm by Amy Stewart (2004)- This is the book that prompted me to learn more about where my food comes from. I didn't like how much Stewart writes about Darwin- but excluding that, this is an excellant read. Learn about worms, learn about compost, learn about organic and non-organic crops and learn about waste managment. Good book all around.

Bittersweet: Diabetes, Insulin, and the Transformation of an Illness by Chris Feudtner (2003)- This is the source of most of my knowledge about the history of diabetes. Lots of well told stories, a good read for any diabetic who wants to know what if. It is weak on international stuff. There are good pictures in here.

Over My Head: A Doctor's Own Story of Head Injury From the Inside Looking Out by Claudia L. Osborn (1998)- When I read this book, I was dealing with a fairly new difficulties with my memory and this book hit hard. Osborn was hit by a car and the consequence was brain damage. This is a story about recovery and acclimation and learning to live without a lot of memory.

Songs of the Gorilla Nation:My Journey Through Autism by Dawn Prince-Hughes (2004)- Two thirds autobiography, one third gorilla, one third lesbian, and one third autism (they overlap). I like it.

My Pet Virus: The True Story of a Rebel Without a Cure by Shawn Decker (2006)- A hemophiliac with HIV writes an autobiography. I dunno why, I just liked this book.

Free For All: Oddballs, Geeks and Gangstas in the Public Library by Don Borchert (2007)- I grew up in libraries and my librarians were my mothers (don't tell my mother I said that). This book is not exactly about my libraries because it's a Californian librarian writing, but it captures a lot of the dynamics that surrounded the libraries I grew up in too.

Hope This Survey Does Not Totally Bore You

2009-08-30T17:53:23Z

1. ONE OF YOUR SCARS, HOW DID YOU GET IT?
When I was in 8th grade, I got knocked down while playing football, and my glasses cut into my face, and there's a very faint scar left, probably only noticable to me and my optometrist.

2. WHAT IS ON THE WALLS IN YOUR ROOM?
A poster of mathematicians given to me by a friend; a mizrach sign on the east wall (for prayer purposes); two sheets of paper with a list of books checked out with the ones that have been returned colored over.

3. DO YOU SNORE, GRIND YOUR TEETH, OR TALK IN YOUR SLEEP?
Occasionally, no, and occasionally.

4. WHAT TYPE OF MUSIC DO YOU LISTEN TO?
I collect songs about medical and other silly stuff. I watch asl music videos on youtube. I tend to listen to country on the radio. I love Jewish music concerts, the kind with dancing, and I listen to various types of Jewish music on the computer. Really, I'll listen to most anything that doesn't offend me.

5. DO YOU KNOW WHAT TIME YOU WERE BORN?
Motzei shabbes. My mother went into labor with me Friday morning, and I was born around 10:30 PM on Saturday.

6. WHAT DO YOU WANT MORE THAN ANYTHING RIGHT NOW?
To quote from the very maudlin song, "A Mother's Dream,":
When people ask me what I wish for, I find it hard to say.
There are so many things I dream of, hope for, on any given day.

Right now my dreams include finding/creating a family for myself, performing well as a student teacher, finding a fulfilling and well paying job, and resolving my health issues.

7. WHAT DO YOU MISS?
Personal.

8. WHAT IS YOUR MOST PRIZED POSSESSION(S)?
This computer, my blankie, my library card, my digital camera.

9. HOW TALL ARE YOU?
Five feet with my shoes on.

10. DO YOU GET CLAUSTROPHOBIC?
Very occasionally, especially in crowds.

11. DO YOU GET SCARED IN THE DARK?
Sometimes after a nightmare.

12. THE LAST PERSON TO MAKE YOU CRY?
Me.

13. WHAT'S YOUR WORST FEAR?
Too personal to share.

14. WHAT KIND OF HAIR/EYE COLOR DO YOU LIKE ON THE OPPOSITE SEX
Impartial.

15. WHERE CAN YOU SEE YOURSELF PROPOSING?
It's got to be in person. Other than that... on the bus, on the train (it'd have to be a relatively quiet train though), at the beach maybe. Yeah, beach sounds about right. Honestly, I'm not too worried about this one.

16. COFFEE OR ENERGY DRINK?
No.

17. FAVORITE PIZZA TOPPING?
Olives.

18. IF YOU COULD EAT ANYTHING RIGHT NOW, WHAT WOULD IT BE?
I'm full, thanks.

19. FAVORITE COLOR OF ALL TIME?
Neon yellow, light blue.

20. HAVE YOU EVER EATEN A GOLDFISH?
Nope.

21. WHAT WAS THE FIRST MEANINGFUL GIFT YOU'VE EVER RECEIVED?
I should remember that?! Maybe parents.

22. DO YOU HAVE A CRUSH?
Not unless I use a really low threshhold for crush.

23. ARE YOU DOUBLE JOINTED?
Nope.

24. FAVORITE CLOTHING BRAND?
Nope.

30. SAY A NUMBER FROM ONE TO A HUNDRED:
A number from one to a hundred.

31. BLONDES OR BRUNETTES?
I never even notice, except when people have really white hair. I kind of like dyed hair on other people (with colors like blue and green and purple), but I'm not really particular.

32. FAVORITE QUOTE?
Besser a yid mitun a bord vi a bord mitun a yid.
Literally, better a Jew without a beard than a beard without a Jew.
Figuratively, better to be a good person without the outer signs than to have the trappings but not the inner goodness.

33. FAVORITE PLACE?
Libraries. Yes, I do love libraries.

34. HAVE YOU BEEN OUT OF THE USA?
Yes, I've lived in Israel. I've also been in the Czech Republic and England for a week each.

35. YOUR WEAKNESSES?
Fear, stubbornness.

36. MET ANYONE FAMOUS?
By my standards, yes. I've met a number of politicians including US and State congressmen, alderman, etc.. I've met some activists famous within their respective movements. I used to have a professor who was also had a news spot on national television twice per week.

37. FIRST JOB?
Babysitter. First job with a W-2, either math tutor or assistant weaver, I don't remember. They were at the same time.

38. EVER DONE A PRANK CALL?
No, that's mean.

39. DO YOU THINK EVERYONE OUT THERE HAS A SOULMATE?
No.

42. WHAT DO YOU GET COMPLIMENTED ABOUT MOST?
My intelligence, my kindness, and my beard, in that order.

43. HAVE YOU EVER HAD BRACES?
Nope.

44. WHAT DO YOU WANT FOR YOUR BIRTHDAY?
Pizza, slippers, sloganed hats (or regular kipot), a CGMS (I can dream, right?), dunno. I'm going to be 21!

45. HOW MANY KIDS DO YOU WANT AND THEIR NAMES?
I'm going to adopt. There are three issues in how many kids, and they are: wanting to avoid a mix of kids that don't get along well, wanting to have enough energy and support for kids. So how many depends on which kids, how my health holds up, and what kind of support I get from a partner and/or friends.

46. WERE YOU NAMED AFTER ANYONE?
Yes, my parents named me after a friend of my mother's who was terminally ill at the time because she had a dream that the friend would live if I was named after the friend. However, I changed my name as soon as I was legally able. The friend, btw, is still alive.

47. WHAT IS THE BIGGEST TURN OFF OF THE OPPOSITE SEX?
Assuming that this really means, what one thing would make me say no to a prospective partner, the answer is smoking. One, that's disgusting, and two, I want somebody who respects their own health and that of those around them.

48. WHAT IS ONE THING YOU LIKED ABOUT HIGH SCHOOL?
My teachers.

49. WHAT KIND OF SHAMPOO DO YOU USE?
Whatever's in the bathroom (parents buy it).

50. DO YOU LIKE YOUR HANDWRITING?
When my hands aren't shaking, yes.

51. WHAT IS YOUR FAVORITE LUNCH MEAT?
Nonexistant.

52. ANY BAD HABITS?
Yep. I'm always losing stuff!

53. ARE YOU A JEALOUS PERSON
No, absolutely not.

54. IF YOU WERE ANOTHER PERSON, WOULD YOU BE FRIENDS WITH YOU?
Maybe.

56. DO LOOKS MATTER?
Like, to me personally or in the general scheme of things? I mean, I guess so. I'm less influenced by a person's appearance than the average person, and I have a hard time paying attention to my own appearance.

57. HOW DO YOU RELEASE ANGER?
To be honest, I haven't had a whole lot of anger since I went on testosterone. It kind of cured the really intense anger. Milder anger... well, I tend to rant to people and online. Sometimes I rant loudly.

58.WOULD YOU RATHER GAIN 58 POUNDS OR LOSE 58 POUNDS.
Gain. Losing 58 pounds would make me dead. Gaining 58 pounds would make me just barely obese.

59. WHAT IS YOUR FAVORITE BAND?
I don't really have one.

60. WHAT WAS YOUR FAVORITE TOY AS A CHILD?
Pen and paper. Um, no... lego?

61. HOW MANY NUMBERS ARE IN YOUR CELL PHONE?
I don't have a cell phone.

62.WERE YOU A FAN OF BARNEY AS A LITTLE KID?
Yes, I even got to go to a Barney conference once!

63. DO YOU USE SARCASM?
Not very often, but sometimes.

64. MASHED POTATOES OR MACARONI AND CHEESE?
Mashed potatoes. I'm a vegan.

65. WHAT DO YOU LOOK FOR IN A GIRL/GUY?
Well, I haven't actually been on any dates yet. But so far, I am looking for somebody who:
MUST
want to coparent
likes me (at any level)
lives in the midwest
would probably make a good parent (very subjective, I know)
I like
queer friendly and disability friendly

PREFERABLY
my age (roughly)
vaguely religiously compatible
shared sense of humor
queer and disabled

66. WHAT ARE YOUR NICKNAMES?
Hmmm...... well, I used to go by Jockey. I've been called Jocko. I use a variety of handles online.

67. FAVORITE SUPER POWER?
Invisibility.

68. WHAT'S YOUR FAVORITE TV SHOW?
Does not exist. I don't watch TV.

69.WHAT'S THE BEST WAY TO DEAL WITH YOUR ENEMIES?
Befriend them or avoid them.

70. WHAT'S YOUR FAVORITE ICE CREAM FLAVOR?
Mint.

71. DO YOU HAVE ALL YOUR FINGERS AND TOES?
Thank God.

72. DO YOU HAVE A COMPUTER IN YOUR ROOM?
Yes.

73. PLANS FOR TONIGHT?
None.

74. WHERE DO YOU WANT TO LIVE WHEN YOU ARE OLDER?
Midwest city, must have health facilities + public transportation.

75. DO YOU WANT EVERYONE TO ANSWER THESE QUESTIONS?
Nope.

76. WHAT ARE YOU LISTENING TO?
The hum of this computer.

77. LAST THING YOU DRANK?
I was slurping my oatmeal this morning, does that count? I probably drank water yesterday- but it might have been herbal tea.

78. LAST PERSON YOU TALKED TO ON THE PHONE?
My father.

79. THE FIRST THING YOU NOTICE IN THE OPPOSITE SEX?
Once again assuming that opposite sex means prospective partner, I think posture.

80. WHAT DO YOU LIKE TO DO IN YOUR SPARE TIME?
Make lists, read pubmed.

81. FAVORITE THING TO HATE?
Erm... curebieism?

82. FAVORITE SEASON OF THE YEAR?
Winter.

83. WHAT'S YOUR FAVORITE TYPE OF CANDY?
Soft mints.

84. HAVE YOU EVER REALLY AND TRULY HAD A BEST FRIEND?
Yes. In kindergarden. His name was Aaron Bradley Chandler Dexter Martin. He was an only child. I haven't seen him in over a decade.

85. WHAT IS YOUR HAIR COLOR?
Brown. Plus I have some white and red and blonde and black hairs (especially in my beard). But mostly brown.

86. EYE COLOR?
Light brown, only my state ID says Hazel.

87. SHOE SIZE?
Children's 4.

88. FAVORITE FAST FOOD PLACE?
No.

89. FAVORITE RESTURANT?
Not really.

90. DO YOU LIKE SUSHI?
Am a vegan.

91. WATCH TV TODAY?
No.

92. FAVORITE DAY OF THE YEAR?
Purim? Simchas torah? Simchas Torah.

93. PLAY ANY MUSICAL INSTRUMENTS?
Badly.

94. REPUBLICAN OR DEMOCRAT?
I've voted both. I tend to lean to whichever is not in office.

95. KISSES OR HUGS?
Hugs. Kisses are just icky.

96. RELATIONSHIPS OR ONE NIGHT STANDS?
Relationships.

97. WHAT WAS THE LAST THING YOU BOUGHT?
Streetwise.

98. WOULD YOU EVER BE A HOUSEWIFE?
Househusband, you mean? Well, I probably wouldn't be the best one, on account of being a natural slob, but maybe. I can imagine working part time and/or from home in order to be able to raise children better and/or better manage my diseases.

99. WHAT BOOK ARE YOU READING?
I just read the excellent book One Big Happy Family, edited by Rebecca Walker, and I'm also reading Measle and the Dragodon by Ian Oglivy.

100. DESCRIBE YOUR LOVE LIFE:
You mean, like, romance? I've occasionally liked somebody an extra lot, though generally people who are totally inappropriate (ie married women three times my age). There's a person (my age and good sense of humor) whose profile I saw on an asexuals' dating site that looks promising and I asked her out (at least, I think I did) but I haven't gotten a reply yet. Still hoping.

August Availability

2009-07-24T01:59:19Z

August's schedule is still a bit murky, but here's about what it looks like.

Sunday, August 2, all day
Thursday, August 6, afternoon and evening
Friday, August 7, afternoon
Sunday, August 9, all day
Monday, August 10, evening
Tuesday, August 11, morning
Wednesday, August 12, morning and early afternoon
Thursday, August 13, evening
Tuesday, August 18, morning and early afternoon
Thursday, August 20, all day
Tuesday, August 25, morning and early afternoon
Wednesday, August 26, morning and early afternoon
Friday, August 28, morning and afternoon

Chicago Area Persons- Play With Me? Chess, Frisbee, etc

2009-06-28T05:34:19Z

How unusual for me, a second LiveJournal Post within a week. This post is primarily to say that if you are somebody in the Chicago are who I have in the past met with or expressed an interest in meeting (or even if you're not, although in that case you should explain who you are), now would be a good a time to schedule me for meeting sometime in July. My July schedule is fairly solid and it's fairly open.
I will be in Chicago from July 3 onwards. I will be working daytime only (no evenings) on some Mondays and Wednesdays. I have standing Tuesday evening, Wednesday evening, and Friday morning committments. And I'm not going anywhere on Friday nights or Saturdays.

So if you would like to play some frisbee, basketball, scrabble or chess; if you would like to read books aloud back and forth, play I spy with maps, or ride busses with me, the following days and times in July are currently yours for the asking (note: Saturday afternoons are also available if you want to come over to my place).

Sunday July 5 all day
Tuesday July 7 from late morning to mid afternoon
Thursday July 9 (no vigorous activities, I'll be fasting)
Sunday July 12 all day
Monday July 13 all day
Tuesday July 14 until mid afternoon
Wednesday July 15 in the evening
Thursday July 16 all day
Friday July 17 in the evening
Monday July 20 in the evening
Tuesday July 21 until mid afternoon
Thursday July 23 all day
Friday July 24 in the afternoon
Sunday July 26 all day
Monday, July 27 in the afternoon (2:30-5:30, about)
Tuesday, July 28 afternoon
Friday July 31 afternoon

hurry, spots fill fast :-/

In other news, my diagnosis is now thyroiditis. I don't, properly speaking, have hyperthyroidism because my thyroid isn't overactive; I do have thyrotoxicosis because my thyroid hormone levels are too high. The thyroid hormone is coming from inflammation of the thyroid resulting in leakage and damage of the colloid cells of the thyroid, rather than from overproduction of thyroid hormone.
We are still working on which type of thyroiditis I have got. Probably nothing too horrible. I'm feeling better already, although not all the way better.

Unexpected Uses Of Three Body Parts

2009-06-25T04:55:02Z

Note: Most people with my issues don't think of their body parts the way I do. This is a one man experience.

Hair Shave it off and feel the way it grows in. Does it grow fast, soft, thick? Healthy. Is it more brittle, slower growing, or sparse? Not so healthy. For me, hair works as a barometer of my health and nutrition; when I'm doing poorly, I first notice how my hair feels off, then I notice that it looks off. Hair as a barometer of health is not infallible, but it will tend to let you know if you have malnutrition or a weight loss that is too rapid for your body.

Boobs I'm a dude with boobs, and when I was younger I hated that. However, I started injecting them a couple of years ago, very useful 'cause I'm low on fatty tissue. Second, in hyperthyroidism, which I've got, there's a lot of weight loss but there's also a bit more estrogen production (don't know why) and most hyperthyroid men develop some breast tissue. So even though I'm underweight, I can look at my chest and my brain says, "You're a guy with boobs- you must be fat! Yay!". So the boobs serve the purpose of making me feel a little bit bigger, which this ninetysomething pound guy can use.

Chin Very useful for pushing the plunger down when I am trying to inject my own arms but the syringe is too big for me to inject with just one hand.

If I'd Known Then What I Know Now

2009-05-24T05:41:58Z

1. People respect solid medical diagnoses, especially accompanied by syringes, a heck of a lot more than they do lists of symptoms or psychiatric diagnoses. When I say that I that I have almost anything else, people say, "you're not like that guy on TV." But when I say I have diabetes, I have instant credibility. Except from schizophrenics and others with surefire cures that don't work.
2. Most people will not accept diabetes as a disability. Dammit.
3. The disability community doesn't care what your disability is as long as you identify. You never even have to bring it up. Individuals in the community are another matter all together.
4. Having multiple diagnoses means never knowing what symptom is from what disease.
5. Having a medical diagnosis means getting your unrelated symptoms taken more seriously.
6. Social and cultural aspects are not the biggest parts of every disability all of the time. When your joints hurt, and your sugar's high, and your whole body's caught in a tremor, social constructs of normality don't mean shit. You wouldn't be ignoring it even if everybody everywhere had the same issues.
7. Believe it or not, a common disability doesn't unite people unless they really want it too, and then it doesn't really matter if they actually have a common disability or not. They'll pretend they do.
8. Self respect is the most valuable commodity there is.

Thyroid

2009-05-21T01:25:48Z

It is horribly ironic that it appears that the only two academic periods in which I was a full time student and got major medical diagnoses will also be the only two in which my GPA is 4.0.

My gallbladder was removed 4 weeks ago. Surgery went pretty well. Unfortunately, I was diagnosed the week before surgery with hyperthyroidism, and at the moment we are sleuthing to figure out which type of hyperthyroidism I have. I keep being asked if this has anything to do with diabetes. This question is both one I am very curious about, and also one that I find a little bit annoying, because the undertone is, "I'm not vulnerable, right?"
Wrong. Getting a thyroid disease is about as common as developing diabetes, although the risk factors are pretty different.

Here are some things I have learned: In third world countries, low iodine intake is the cause of lots of hypothyroidism, a little hyperthyroidism, and a lot of mental retardation due to congenital hypothyroidism.

In most of the world, iodine is plentiful. Thyroid disorders are still common, but not nearly as common, and especially not in the very young; there are still belts where pollution causes thyroid disease.
Most thyroid disorders are autoimmune, and for that reason, type 1 diabetics are at increased risk of developing Graves' Disease, Hashimoto's Disease, and Plummer's Disease, which are my doctor's top three choices of what might be wrong with me, although so far my results in the screening for these diseases have been normal.
All of the common thyroid diseases are more common in women than in men, although the sex differential is a lot more pronounced as you get older; in young children it's almost an even split.

Diabetics who do not have an autoimmune component to their diabetes (and some people classified type 2 still do have some antibodies, thought the autoimmune process is generally not as intense as in type 1), do not have an increased risk of thyroid disorders.
In fact, being overweight (which tends to go along with type 2 diabetes) is protective against hyperthyroidism.

And of course, because thyroid diseases tend to develop later in life (at 20, I'm pretty young to have a thyroid disease- the likelihood of developing one increases until about age 60), the decreased life expectancy of the diabetic decreases the odds of getting a thyroid disease over the entire lifetime.

A Slight Oversight

2009-04-08T14:15:02Z

I attend a large university (24000 students) in a large city. At my university, a student with a problem has a lot of places to go. You can talk to an assisstant dean, the office of students with disabilites, the office of students with learning disabilities, the university ministry (with a guy who'll advocate for you in religious issues), ID services, counseling services, office of LGBTQ students, office for international students, office for ethnically diverse students, office for commuter students- the whole shebang.

At the beginning of every quarter, all of my professors remind us that if we want accommodations, we should speak to them, and/or have the various offices speak to them. I have the diabetes registered in the office of students with disabilities, as do some but not all of the diabetic students on campus. I was a sophomore when I was diagnosed with diabetes, and I was able to get accommodations for some of the things that I was having trouble with due to new onset diabetes, even though those would not be permanent, as well as the things that will always be issues for me. That is, I had major difficulties with my vision for about two months after I went on insulin, and I was given photocopied notes and lecture notes because I couldn't see the board even when I sat in front. These days, I only ask to be allowed to eat and test my blood sugar in class.

Anyways, this quarter I am scheduled for a medically necessary surgery. The surgery is not because of diabetes, although it will likely be more complicated because of diabetes. And I have a little problem- there isn't an office of students who are having temporary medical problems! I can't register this problem with anybody in particular- although the dean of my college has been suggested as a person to talk to, just in case. I'm hoping to miss no more than a week of classes- but my surgeon says it's possible that I'll need to be in bed for a month. So while I'm hoping for the best, it makes me very nervous that I don't have it set up and guaranteed that I won't be penalized if I am out for that month. We could use an Office For Students With Injuries

Just saying.

Glycosolated Hemoglobin, or the HbA1c

2009-03-05T23:47:55Z

What It Is

Hemoglobin is a protein found in blood cells, particularly red blood cells. During the life of a blood cell, sometimes the hemoglobin gets attached (or bound) to sugar. In a person whose blood cells and blood sugar levels are utterly average, just over 5% of the hemoglobin will be attached to sugar at any given time. The percentage of hemoglobin that is bound to sugar is known as the HbA1c, or just the A1c. There are two main factors that affect the A1c, and here they are:
1) The lifespan of the blood cell. The longer it lives, the more time it has to get stuck to sugar.
2) The blood sugar levels during the life of the hemoglobin cells that are currently in the body. The more blood sugar, the more likely a hemoglobin cell is to get stuck to sugar at any given moment.

The DCCT

In the late 1970s, the A1c began to be used to measure overall diabetic control. In the mid 1980s, a very large trial was started with adult type 1 diabetics who did not have a history of severe hypoglycemia, looking to see what factors contributed to diabetic complications. They used intensive (and I mean intensive) therapy and multiple daily injections for a trial group, and the control group used one to two daily injections. The HbA1cs were measured for everybody in both groups, and the trial group aimed to get A1cs below 6% (5.8 being upper limit of nondiabetic normal).
After 9 years, the first findings were published. The trial group got an average A1c of 7.05%, 1.2x times their goal. The control group had an average A1c of 8.9%. Within both groups, lower A1cs correlated very strongly with lower complication rates, particuarly with lower nephropathy. Within A1c titrates, the trial group got fewer complications. The trial group had higher incidences of seizures and hypoglycemic injuries and deaths, although they had much lower rates of kidney disease, retinopathy, and neuropathy. Following the publication of the DCCT, getting an A1c became standard diabetes care, and getting below 7% became insurance companies' definition of being in good diabetic control.

Problems With the HbA1c

There are two types of problems with using the A1c. One is social- should we really call it control at 7%? Complication rates are lower at 6%. Even lower at 5.5%. Should insurers or doctors classify control like that anyways? Should we be willing to risk seizures, brain damage, and death from hypoglycemia in an attempt to get below 7%?

The other problem is that the A1c is a function of two factors- average blood sugar and average hemoglobin life span. The life span of the red blood cell is affected by things like testosterone level, overall health (including diabetic control), blood transfusions or donations, and genetic conditions.

My Problem, or Why I Am Writing this Today

When I was diagnosed with diabetes, my A1c was over 16%. Five months later, I had brought it down to 6.5%- especially impressive for a teenager. My next few A1cs were 6.3%, 6.3%, and 6.4%. Pretty damn good. And then, I started using anabolic steroids under medical supervision. Problem was, the doctor who put me on steroids did not take the precautions for my health that he should have. For example, he should have tried to figure out why my testosterone levels were low to start with (low compared to male normal, for those who have heard this story before- well above female normal, thank you very much). But he didn't. He gave me a full replacement dose of testosterone. And my testosterone levels went high. Four dose reductions and one doctor later, last week I went to my endocriologist for an A1c draw. And the endocrinologist (who isn't the person who is putting me on testosterone) drew a hemoglobin count as well. I was expecting an A1c in the lower 6s. I figured I had had an unusually good run of blood sugar numbers over the previous few weeks. Instead, the labs reported my A1c as 6.9%. I was not happy.
But lo! my A1c was not due to undetected high blood sugars. No, what happened is that my total hemoglobin levels were way above the normal range. Because my hemoglobin cells were living longer than they should be, a larger portion of them were attached to sugar. Now I get to wonder about how valid the past four HbA1c readings were. Did I really have worse blood sugar this year, like the A1cs would imply, or did I simply have too many red blood cells? I do not know.

As a last note, there is some normal variation from person to person in what the hemoglobin levels are. The normal range for men and women overlap, with the men's normal being a bit higher than the women's. Being slightly above these normals isn't dangerous, but being more than slightly above them is. The blood is thicker and tends to clump and then you have embolisms. The treatment is to have blood drawn, with frequency dependent on severity. Having the blood drawn does not make A1cs any more accurate though, and fructosamine is sometimes used as a substitute for measuring overall diabetic control.

Stupid Things People Say

2009-02-13T03:59:46Z

What They Say: He needs to check his insulin levels.
Why It's a Stupid Thing to say: When insulin levels actually are checked, that happens with a blood draw in a hospital or doctor's office, the results take days or weeks to come back, and the usual test is called a c-peptide (because that's what it actually measures). Testing the actual amount of insulin in the body rather than the indicator c-peptide is costly and very very rarely done outside of research testing.

What They Say: My [fill in the relative] has diabetes and she [got sick and/or died] but she didn't take of herself.
Why It's a Stupid Thing to Say: Look, I understand that you want reassurance but can you even hear yourself? You're blaming the victim. That's telling me straight out- if I get sick and/or die- it will be because I didn't take of myself. The thing about 95% of type 1s and probably 70% of type 2s is that we can make a pretty big difference in how quickly we get sick from diabetes but no matter what we do, we won't get normal blood sugars, and we will get complications. What we need to hear is NOT that you'll be blaming us. Shut the fuck up, man.

What They Say: But you've got it pretty well controlled, right?
Why It's a Stupid Thing to Say: See above. I have met dozens of type one diabetics, all of them conscienscous about their health, and only one who felt controlled. Either he's got a weird body or he's smoking something strong. People whose bodies do not make more than a teeny smidgen of insulin never get to the point where they can coast along.

What They Say: You can't eat that!
Why It's a Stupid Thing to Say: What is that supposed to be, a dare? Sugar is not poisonous to diabetics. Some people with diabetes, including a majority of type twos and some significant portion of type ones, find that some diet helps. However, those diets vary really widely by person and many diabetics are not on any diet at all. Sometimes, particularly for otherwise healthy type one diabetics, no diet is needed: all food can be covered by insulin. I personally can eat pretty much anything but splenda without any nasty blood sugar repercussions, and if I want to eat Splenda, I can- I just have to make sure I can deal with the blood sugar afterwards. Please don't be the diabetes police, especially if you don't have a copy of the rulebook.

What They Say: You're so brave. I would just die if I had to do that. I can't stand needles!
Why It's a Stupid Thing to Say: Do you really think you'd rather be dead than diabetic? And if you do, do you think that was really a polite thing to say? You'd understand if I just killed myself, huh? Fuck brave, I just do what I have to do. It's also ignorant: for the needlephobic, there are needle free ways to get your shots.

Causes

2009-02-01T22:57:46Z

Type 1 diabetes is an autoimmune disease. That means that the immediate cause of my diabetes is that some white blood cells came along and gobbled up some of the parts of my body (islet cells and proteins covering the islet cells) that resulted in an inability to create insulin and therefore an insulin deficiency and high blood sugar.

OK, great, now that leads to more questions, most obviously: Why the hell would my white blood cells DO that? Turns out that the body produces specialized white blood cells to destroy particular things; ones that destroy parts of our own bodies are autoantibodies and a huge part of the human population has autoantibodies and a small subset of these have autoimmune diseases (including rheumatoid arthritis, lupus, multiple sclerosis, type 1 diabetes, celiac sprue, Hashimoto's thyroiditis, and some other crap- diabetes being the only one I've listed that is more common in guys). So we can turn this question into two questions.

Question 1: Why do some people's bodies produce autoantibodies?

And there are a lot of answers that have been suggested for this one. Genes predispose you. Particular triggers may predispose you. For a few autoimmune diseases, all of the cases are explained by known triggers. For others (like diabetes) some cases can be linked to known triggers while others can't. Some of the triggers include diseases that to the white blood cells, look the same as a body part. There's some suggestion that oral consumption of animal products containing certain hormones may cause the body to produce antibodies against that hormone. Injection with hormones can certainly cause a reaction to the person's own hormones of that type. Immunosuppressants trigger some rare immune diseases.

Question 2: Why do some people with antibodies develop autoimmune diseases, while other people have autoantibodies but no disease?

That's another great question, with even less satisfying answers. Triggers may still be part of the answer. For diabetes and some diseases where more than one antibody has been implicated, it seems that you have to have more than one antibody, and that they have to be in large quantities. Sometimes it seems that the antibodies can't get to the body part that's involved, or that the body is regenerating and so there is subclinical disease. You may also have a suppressed immune system preventing the levels of antibodies from getting high enough to cause damage.

If you happen to be a friend of mine, you may be wondering why I put this up now. Well, I'll tell you. One of my doctors just recently suggested that I may have a congenital adrenal disease, and one of the symptoms of that disease is hypoglycemia and I was wondering if that could have triggered the diabetes. That's all.

Going Through Security

2008-12-08T02:04:57Z

Last week my grandmother died and I flew out to her funeral. It was the first time I had gone through airport security since 2004, and I was nervous. I brought along my prescriptions for everything I brought. I went through security and nobody even commented on my stuff. Zip zip no problem.

Well, I got sick in my destination city, the throwing up kind of sick. Bought ketostix over the counter and found that I was fine. My father put an unopened thing of pedialyte in his luggage (more than 3 ounces of liquid) and we headed to the airport. Once again, I went through security just fine. Zip zip no problem. I put my boots back on and waited for my father. Wait, wait, wait. Not there. So I headed back, looking for him, and found him surrounded by security.
"Look, there he is," says my father.
"You have diabetes?" asks one of the guards.
"Yup," definitely I do.
"Can I see your medicalert?"
"OK, go ahead," and she waves in a general sort of way at my father, in a way that means, go ahead, you're fine.

The silliest part of that is that my medical ID is just the kind that anybody could order online. I offered to show them my insulin prescription (which you can't annonymously order online) but she didn't care about that. Whatever.

It was a domestic flight, FYI.

Sometimes Knowledge Bites

2008-11-04T03:40:45Z

I have unusually high levels of protein in my urine.

and it might go away and it might stay-here at stage one kidney disease- and it might progress to kidney failure and all there is to do is run lots and lots of tests over and over again and wish that there was a cause that we could do something about and wonder if it will go away by itself- as these things often do- or stabilize and leave me here in limbo or progress on to more dire stages of kidney disease. we wonder if my kidneys could have been impaired by my abnormally high levels of testosterone, which were coaxed downward over the summer, or if we might have missed noticing a kidney infection among my many colds, and if it means anything that my blood pressure has risen though it is still really low. and we ponder every little weight loss, as they have now added up to quite a large weight loss and i look at my skinny and diseased body and wonder where it is going and i wonder how or if i ever thought i could control this mess that is me. and not me, this body that seems to be on a crash course towards distruction. of course, the most likely outcome is that the protein levels will go down and maybe they'll come back and in the meantime we'll be aware that they put me at increased risk of microvascular complications such as retinopathy and neuropathy and all sorts of opathies and we'll ponder the doctor's suggestion that maybe i have kidney disease entirely separate from diabetes and we'll remember that 45% of people who start on dialysis got there from diabetes and defensively we'll point to my wonderfully low glycosolated hemoglobin levels - only 1.1 times the upper limit of normal- and we'll worry so loudly that the silence won't be able to threaten us and in the end i'll remember that we only tested my urine because of the diabetes risk thing. after a careful consideration of treatment options suggests that the best treatment for me is no treatment, we will wonder:

why did we want to know, anyways?

"What's the Prognosis?"

2008-09-12T03:05:24Z

Yesterday somebody asked me what the prognosis was for me, having diabetes. And I was taken aback by the humongousness of the question, even though I've answered it before, for myself and others.

In the end, the best answer (which I didn't give), is that the prognosis is uncertain. I'm unlikely to die of diabetes in the next decade. I already have complications and I might develop more, have the ones I've got get worse, or even have the ones I've got get milder. I am likely to die of diabetes, though not in the next decade. I am likely to live long enough to do many meaningful things and to make my education worthwhile.
I know that it is possible to live a long time with diabetes, but I feel irritated when people feel compelled to share stories of people who did. I know that "noncompliance" doesn't help, but it doesn't make me feel better when you describe your relative who is forty-five and dying of type one diabetes as having been noncompliant.

I am 19 years old. I have had, by medical standards, well controlled diabetes for two years. By normal laymen terms, my diabetes has been on a roller coaster ride. I had uncontrolled, undiagnosed diabetes for a few years prior. If I am lucky enough to live to be 45, which I think is likely, then it is also likely that I will have months and years in which I'm more and less willing able to control diabetes. I spend most of my time with one eye on diabetes. Can you imagine that that won't grow tedious in twenty years?

A medical person I trust says it takes a cumulative five years of poor control to wreak havoc on the middle, average person's body. My body had probably endured that by the time I was diagnosed. I am sitting on a bomb.
But the catch is that nobody knows if it's a dud. Maybe I'm that lucky diabetic who could run blood sugars of 300 for sixty years with no major ill effects. I know I'm not the unlucky diabetic who can't run blood sugars of 300 for even two years, because I've already done that. Over the last two years, my average over a given month has varied from about 105 to about 160. Both of those extremes are considered good diabetes control. Neither one will save me if the bomb I'm sitting on is a potent one. Any improvement in diabetes control will lengthen the time it takes for the bomb to go off and it will lower the odds that the bomb will explode with much force. But I have no hope that the bomb will not go off. I am already dealing with minor, early complications. I am only hoping that it will take decades for them to get bigger, and that it will take decades for new complications to join the ones I've got. But I don't truly believe that it will take decades. And I don't know. I can't know. Diabetes complications unfold very differently in different people.

And as a last and tricky monkey wrench, I do not know if any major medical advances will benefit me. The CGMS will not make a major difference, I do not think. I think that the benefits will be nice, but in the long run not much benefit. I see no benefit for me personally to an insulin pump, and I don't plan to use one. I think that islet cell transplantion may help the body recover and may reset the timer on the bomb while it allows for temporary (maybe a year's worth) of euglycemia, but it requires immunosuppressants and major surgery. Kidney dialysis could also improve to make kidney disease less threatening, and so could various heart disease therapies. The current BCG trials for diabetes are unlikely to make a huge difference for people whose diabetes was caused by more than just GAD autoantibodies (mine was caused by at least GAD 65 and ICA 512), but maybe something else will. And perhaps adding cpeptide and amylin back into the mix will help things. I really couldn't say.

What's the prognosis? Ask me in ten years.

Sometimes I Hate To See Money Spent

2008-08-18T05:12:21Z

Today I switched all the alarms on my CGMS to vibrate mode. Before they beeped, and I rarely heard them. Today I heard the alarm! The monitor hitting itself against the table is a lower pitch and much easier to hear than the high pitched beep. I have been having some hearing problems for the last few months on and off, and for the last month and a half nothing but on.

Something that people rarely guess about me but ought to is that I do not believe in entitlement or rights, not even to life. I do not believe that it is moral to force a company to pay for more expensive medical devices if you are not going to benefit from them. I do not believe that you should be able to force somebody else to spend five million dollars to extend your life by a year. It makes me sick to think about how many millions of dollars are spent on research that could be spent on treatment.

How about this? Instead of raising money to fund cure research, while forcing lawsuits to get insurance to pay for expensive medical equipment, how about simply raising money to fund medical equipment? Or better yet, how about a lawsuit to remove the stupid regulations and patenting to allow cheap mass production of test strips and other glucose monitoring systems?

Oh, and how about not claiming that you have to test blood sugar in order to know blood sugar. I am sometimes tempted to rely on urine sugar results alone for three months, just to prove that I could do it and get an A1c below 7, because there is not a doubt in my mind that I could.

Often I think about life as though if the production costs could be lowered, the purchase price would necessarily follow, even though I know that that is patently false with regards to medicine. I wish it weren't false.

Getting Diagnosed With Diabetes

2008-06-11T20:09:01Z

I was diagnosed with diabetes when I was 17 years and 10 months old. I was mildly underweight, moderately ketotic, severely hypokalemic and severely hyperglycemic. My fasting blood sugar was 453 and my glycosolated hemoglobin was off the charts. My islet cell antibody levels were about 50 times the upper limit of normal, my GAD 65 antibodies (which destroy the coating around insulin and islet cells) were four times the upper limit of normal, and I did not have insulin antibodies. My c-peptide level, which measures the body's ability to produce insulin, was half the bottom limit of normal when my blood sugar was over 400; when my blood sugar came down to 200, my c-peptide reached unmeasurably low levels. The diagnosis of juvenile, type 1, or autoimmune diabetes was clear.

Unfortunately, it took years to get me to that point. While many people point to diagnosis and say, my life was changed I could never be carefree again, I point to my own and say: my life was saved. I could live.

The onset of my diabetes was not typical. Type 1 diabetes most often has a sudden and dramatic onset. Mine was dramatic, true, but it was anything but sudden. I had been losing weight slowly and gradually for two years, and I'd spent my freshman year of college sick. I had entered the school year feeling just a little bit tired. I went for morning runs, which I abandoned after two months because of the frequency with which I collapsed on the sidewalk, unable to continue. By January of my freshman year, I had become very worried about my exhaustian, and I went to the university's counseling center for help. I told them that I was having difficulty maintaining decent eating and sleeping habits, that I had a history of depression, and that I'd been diagnosed with autism, all of which was true. I got a counselor right away. He didn't help. By March, my sense of taste had been skewed and everything was bitter, a symptom of hyperglycemia. But I didn't know that. I just thought I was being poisoned. I began throwing up on a regular basis, not on purpose. By May, I was throwing up multiple times per week. In June, I began to wet the bed frequently. I had wet the bed very infrequently for the previous few years; I attributed the increase to stress, or maybe a virus. I also got insomnia. I was too thirsty and hungry to sleep much of the time. I couldn't focus enough to count to twenty.During July, I stopped being able to climb up two or three stairs without my heart pounding, getting out of breath. I had to ride the bus everywhere, which I took as a personal failing. By the start of August, my stomache became distended and I began to waddle. My vision tunneled. I cut my hair and noticed that it was very thin. It did not grow in again. By the end of August, I realized that I was not going to be able to succeed in school if I did not get better. I didn't think I was strong enough simply to walk from one classroom to another. I worried that perhaps I was terminally ill. I worried that I was a big hypochondriac baby. My family and friends told me that I looked ill and I that I needed to take better care of myself. They did not know how hard I was trying.

At the start of September, my mother took me to see a doctor. I was tired and weak and I let my mother talk for me. The doctor had me pee in a cup and came back triumphant. My urine, she told us, had a lot of sugar in it. My blood sugar was tested next and it too was high. But the doctor didn't make the sensible diagnosis. Instead I was sent home with a prescription for the oral medication glucophage and a diagnosis of type 2 diabetes. The doctor called that evening and made the correct diagnosis. She was hysterical. She said that I needed to be hospitalized immediately. I asked if it could wait until after the sabbath. She said it could not. She called the hospital to let them know that I was coming, and my father drove me to the hospital. I didn't have to wait at all- they were ready for me. They stuck an IV in me, with insulin, saline, and potassium- later they'd add sugar so that they could keep giving me the insulin I so desperately needed. It took a few tries to put in a line because my veins were small due to dehydration. Within two hours, I had come alive as though from the dead. I felt like I was awake for the first time in years, as though I had been reborn. I was transferred to the children's hospital and I was kept there for four more days.

It has been 21 months since I was diagnosed with diabetes, and I am grateful for the opportunity to live with diabetes.

Every year in Chicago, one child dies at the onset of diabetes, about half of them right after being diagnosed, the other half without being diagnosed in the first place. Nationwide, about one hundred people will not have the chance to live with juvenile diabetes. Millions of type 2 diabetics (who are a far more numerous category of people and whose diabetes onset tends to be slower) are undiagnosed. Half of type 2 diabetics have had permanent side effects of high blood sugar by the time they are diagnosed.
I expect that the year or more that I spent with high blood sugar has had a permanent toll on my body and that I will face the complications of diabetes sooner because my diagnosis was delayed for too long. Early diagnosis is important in the treatment of diabetes.

I hope that nobody, or at least nobody I know, will suffer the agnonies of being sick with untreated diabetes. Of thinking that you could walk another block, if only you tried. Of not having insulin when your body's cells are starving for want of the same glucose that you are pouring down your throat. It is very very easy to spot diabetes. Unfortunately, doctors' offices in the US insist on looking at fasting blood sugar, which is the last thing to go. I suggest that if you suspect that you have diabetes, have your blood sugar tested after you eat, or simply buy a little jar of urine glucose sticks (thirteen dollars for fifty to a hundred sticks) and pee on one after breakfast. If it shows any glucose at all in your urine, chances are 70% that you have diabetes.

Naivette

2008-05-25T19:59:25Z

Sometimes people accuse me of being naive. On the surface, it is a reasonable assumption. I am an idealistic teenager with a cognitive disability. I might not have noticed the bumps in life.

In reality, the assertion is an absurdity. Sillies, what being a disabled teenager means isn't that I was protected. It's that the number of times that I have been assaulted is more numerous than the number of times that I have been protected.
In reality, after being mugged on the streets as a preteen I didn't even think about telling an adult because I didn't see the mugging as any different from what my classmates had done to me in almost a dozen schools.
In reality, I have a sensory processing system that makes many acts of kindness percieved as hostile and painful.

In reality, when I decide to spend time with people my mental mathematics says, Do you like that person enough that it's okay if he steals all the stuff you have on you, and do you have an escape route planned if she should attack?

I am young, it is true. And I am fond of people, indiscriminately, that's true. And I will care about you, even though you mean me ill, it's true.

But I am not naive.

Five Recent Things that made me Smile

2008-05-21T06:22:47Z

That Welcome to the Hillula D'Rashby sign on the synagogue across the street. 44 hours until the Hillula! I'm beamingly eager. I'm going to jump around and dance and be happy happy happy.

Two emails that said thank you and had one line about what for. Really, I love it when people tell me what I do right. Especially if I put time and effort into it. I reread the thank yous about six times each. Thank you.

Riding the 147 bus when there's not much traffic and it's zooming down Lake Shore Drive.

Seeing my fingerprint, magnified about twenty times, onscreen. That's just really cool, even if I stood in line for an hour for this dubious privilege. I said thank you to the technician.

Looking at my daily statistics on my continuous glucose monitoring system and seeing it say Above range: 0%. In range 100%. Below range 0%. That lasted until about 4 PM today, when I went high. But it was great while it lasted.

diadactic @ 2008-05-11T00:21:00

2008-05-11T05:24:42Z

Things are going much better with the professor. Much much better.

My diabetes care is going pretty well. I'm wearing the Medtronic Minimed Guardian Continuos Glucose Monitoring System, and it's doing an awesome job.

This is how it works; I insert a sensor inside of a 23 gauge, 1/2 inch long needle. Yeah, ouch. Then I remove the needle, wait a few minutes, and attatch a transmitter. It transmits data via radiofrequency signals to a monitor. After a calibration or a few, it translates the electrical pulses that it gets into a prediction about my blood sugar. The radio frequencies update the monitor every five minutes.

For some, the Guardian is very accurate; for most its somewhat accurate; for a few its inaccuracy renders it worthless. For me, it's been awesome. More accurate than my standard glucometers.

Studenting

2008-04-11T04:57:49Z

Classes started for me a week and a half ago. I'm taking three of them, just enough to be considered full time.

One of my classes is an absolute delight for me- straight forward lecturing by a passionate instructor on a scientific topic who doesn't mind questions and asks questions of the class (No not you let's give somebody else a turn) of the class every few minutes. That professor also requires no homework at all.
Another class is really the opposite- largely small group discussion about a somewhat subjective topic, with a lot of homework. That's still pretty fun.

My last class should be fun too. There are only eight students. The topic is rich but unfortunately full of psychological issues I'm uncomfortable with. The teacher does some lecturing but what she says doesn't make sense to my poor literal minded brain and I keep asking questions. I ask questions in all of my classes, but here they don't sound very smart. And I have the nasty suspicion that the professor doesn't like me. Today after I pointed out my confusion for what I guess was one too many times, the professor froze. The animation and joviality dropped as though they'd been nothing but a mask. Slowly the professor's words come out: that I did say I had special needs and maybe I really don't get it, so it will be reworded in case it wasn't clear enough the first time. I'm not feeling respected, although I think my professor is making an effort to be nice. I suspect that the professor isn't feeling respected either. On an emotional level, I'm frustrated and sad and a little bit angry, and also feeling guilty and wondering if it's my fault. Should I keep my mouth shut?
I know that most of my professors have enjoyed having me in their classes. They've told me so. I also know that one professor and some of my gradeschool teachers found me to be a nightmare. I know that this professor in particular has the sort of personality that I tend not do well with, but also that the professor has had a big influence on another professor I had who was awesome. So I should try to find that awesome too.
I think that I am going to keep my mouth shut as much as possible in future classes. I'd like the professor to see that I'm smart and lovable, but I think that at this point it isn't going to happen. First impressions matter and I didn't make a good one.