Tuesday, August 28, 2007


On Saturday, I'll mark one year of exogenous insulin usage.
When I was in the hospital, one year ago, I was told that there were a bunch of things that I, as a diabetic, should have checked annually.
My kidney function. Celiac antibodies. Feet and reflexes.

And eyes.
On the morning of September 1, 2006, when I thought that the doctor visit was going to a waste of time and that all I'd had was a really nasty cold that I was being a baby about, my vision, with glasses on, was 20/20. Without glasses, I coudn't see a foot away. My night vision was terrific, and I generally preferred dim lighting because light bothered my eyes. I had preferred dim lighting for about three years.
I was put on IV insulin that night.
On the morning of September 2, 2006, my blood sugar was down to about 200. My vision, without glasses, was about 20/80. The glasses I had were way way way too strong.
For about three months, my vision was funky. It was nonconstant, changing. I never knew whether I'd see or not in five minutes. I sat as close to the board as possible in all of my classes, went around without glasses, and struggled to see.
Eventually, my vision got slightly worse, to about 20/100 without glasses. I got new lenses that let me see at 20/20. My night vision is screwy and I now prefer the light.

Partly because of my funky vision, and partly because I was very familiar with complicated diabetics, I worried that I had already had damaged eyes.
I went to see an ophthamologist. Whereas usually nurses are cooler than doctors, the nurses in that office were some of the most unkind people I've encountered. I'm not exactly fearless when it comes to eye drops, and I kept closing my eyes. The nurse made fun of me, called me a baby, asked in a very mean way if I wanted to keep my eyes safe or not. The doctor was nicer, but still.... YEARGH. My eyes showed no sign of retinopathy, he said. I had my optometrist check for glaucoma a few months later; no glaucoma.
I know that I'm supposed to see an ophthomalogist every year, but them being mean and nasty, and this being only one year in, I think I'm going to take a pass this year.

Saturday, August 25, 2007

Technological Medical Advances

The results of the blood draw are in. My A1c is once again 6.3%, the same as in May. I'm a little bit disapointed, but not very. 6.3% is not bad.
My meter, a different accu-chek aviva, read 103 while the actual value was 87, once again high, but this time not so much so. I had been hypo, my meter reading 56 but me being dizzy and losing my peripheral vision, about two hours later.
My endo and I had discussed how the meters are all inaccurate and there's nothing we can do about it and I was once again feeling really frustrated. After the endo visit, I had walked over to the Harold Washington Library Center, gone to the RC660 part of the library, and picked out a book.
A Gift of Life by Alfred Beckler, 1983
The title is taken from the slogan of a kidney foundation. Alfred Beckler was diagnosed with juvenile diabetes in 1957, when he was fifteen years old. For reference to my life, he developed diabetes fifty years before me, the year my mother was born, and at approximately the same point in his life. He did not have the advantages of adjusting insulin for food intake, and he didn't have his A1c taken, and he didn't have a home glucose meter.
Fourteen years later, 29 year old Alfred Beckler, who never got screened for renal problems, as I can get screened whenever I want, was diagnosed with kidney disease because of the fluid in his legs. He had at that point three sons. He was given medications to treat the symptoms of kidney disease; medications to help his heart and his blood pressure, but nothing for the kidneys themselves. He got worse and worse and within a few years, he was told that he was going to die. He learned about that novel therapy, kidney transplants. He was told that doctors were unwilling to perform kidney transplants on diabetics. He persisted and found a willing center. Two of his siblings tested as matches, and he received a kidney transplant from his older brother. Alfred's kidneys had to be removed first, and he was put on dialysis. This sounds like an excruciating ordeal. Dialysis was in much earlier stages at that point.
Beckler's sight was totally gone within a few years.
Wanting to protect his remaining organs and his new kidney, Beckler sought a cure for his diabetes. He received a partial pancreas from his older sister, and it began to make insulin, but shortly after the transplant he got an infection and the immunosuppressants had to be cut back and so he lost the partial pancreas.
Eventually, Beckler received a pancreas from a boy who'd been in a car accident. The new pancreas was still producing insulin when this book was written. At the time that this book was written, only 57 pancreas transplants had been done. At the time of transplant, Beckler was still measuring urine sugar.
As I read this book, I found myself telling myself again and again that I have much much much better tools for controlling diabetes, that I have better diabetic control than Beckler could have dreamed of having. That drugs are available to protect my kidneys should I ever develop kidney disease. That dialysis these days has come a long long way. I am not particularly worried about my sight.
This book is slightly ablist in the introduction, where Beckler writes that he refused a handicapped persons award because he does not want to be thought of as a handicapped person, but it also presents the discrimination Beckler faced (faces?) as a blind person, as a person with kidney problems, and even as a diabetic. While learning to go out on his own, newly blind, Beckler had difficulty crossing the street and fell. The people waiting for the bus ignored him and his need of help, assuming he was drunk, despite the white cane.
I would love to know what happened to Beckler; is he alive? Did he get to keep the pancreas? Did it keep working?

Thursday, August 23, 2007

Endo Visit

I went to see my endocrinologist today.
I drank a lot of water before hand.
Went into the office, good news is that my weight has not gone down, is actually half a pound greater (which is about the same thing as no difference).
As I waited, I could hear the endo in the room next to me, pleading with the patient to please test her blood sugar just once per day.
He came into the room, asked me how I was doing. I told him my blood sugar was great but that I felt crappy. He showed me Calorie King, which he was very excited about. I told him about my recent insulin regimen, showed him my meters and a few charts about my overnight numbers. We talked about the accuracy of various meters, and I asked him how to cope with my meters, knowing that I'm gotten readings more than 30% high at times; should I assume that a meter that runs that much higher than reality is always reading at least a little high? He tells me no, I can't assume that.
He checks my reflexes, talks to me about how I'm doing in college, checks my blood pressure (110/70) and my pulse (68).
He does the A1cs with a venous blood draw rather than a finger stick. He draws the blood himself. This time he gets blood on the very first poke. Yes!
He asked me what I guess my A1c will be, and I, optimistically, guess 6.1%.
I tell him it depends on how much it's stacked towards recent readings; I've had fairly low numbers for about three weeks but ran high for about two weeks before that. He says that A1cs tend to go up much faster than they come down. I tell him I guess it will be between six and six and a half percent. I'm in my heart hoping for even lower, but wouldn't actually be surprised by upper sixes. My last two readings were 6.5% in January and 6.3% in May; I'll blog as soon as I have the results.

Monday, August 20, 2007

I-PORT, take 6

I've been forgetting to try the Ports.
On Friday afternoon, my mother put the 6th one into my left thigh. I did not use skin prep; I took a bath and then a shower to get clean beforehand. It hurt going in and the initial pain wore off in minutes.
The area remained slightly sore for the entire time that I wore it, but it didn't get really bad. Needles didn't hurt going into the port, but about half of the shots had a sting when the insulin went in, with more sting towards the end. I only injected Novolog into the port, and I put about 20 shots into it.
I removed it this morning after breakfast. The breakfast Novolog shot had stung. It was 8 units, and the last four stung a lot more, but it was still less painfull than most of my injections. The area under the adhesive was only slighly red, but the inner area had swollen and there was a semicircular bruise that was slightly swollen. The cannula was at a 70 degree angle from the port (it goes in at a 90 degree angle), and had a small amount of pus and blood inside. There was a small amount of blood (three large drops) from the site.
My blood sugar ran fairly decently during this time, with the highs being attributable to Lantus problems.

In other news, it appears that my fatigue isn't a direct cause of blood sugars! Yes! It seems that I might have hepatitis A, which is absolutely wonderful because guess what? Hepatitis A should be GONE in just a couple of months. Which is longer than colds take, true, but way shorter than the expected duration of diabetes. The fatigue will be gone, did you read that? I'm happy.
I don't actually know that I have hep A; somebody very close to me found in a routine doctor visit that xe has some liver problem and was tested for hep A and will get the results back today; but I have every single symptom of phase 2 hep A. I've been vaccinated against hep B. Phase 2 hep A symptoms that I have include anorexia (meaning lack of appetite, not anorexia nervosa), nausea, joint pain, itchiness, fatigue. I'm also glad that if I have hep A, I probably don't have arthritis :-) I was pretty worried about it.
Hep A is very rarely fatal in people whose immune systems haven't been severely compromised (diabetes is not severely compromised). Severity of symptoms ranges from none to extreme fatigue. By the time you're where I'm at, you can treat the symptoms but otherwise you can't treat it. Like chickenpoz, having it once confers lifelong immunity. Althought it is sometimes classified as an STD, it is usually gotten other ways, such as working with small kids who aren't totally toilet trained (person close to me is a family member, not a significant other).
Peace out,

Wednesday, August 15, 2007

Diet and Type ONE Diabetes

I don't think I'm alone, as a diabetic on insulin, in getting upset when people try to tell me what I can eat or assume that I'm on a diabetes diet. I'm not. But there are a lot of diabetics who are. I think every adult diabetes forum has at least one Dr. Bernstein fanatic.

Two weeks ago, I got a cold. It made me insulin resistant, and I ran 200-400 a LOT. My meter's 7 day average hit a six month high of 148. Then I stopped eating. I said hey, I hit the 300s after supper the last three days, I'm going to skip supper tonight. Well, I went from 110 to 240 at suppertime anyways. Oops. Opened a new bottle of Lantus and upped my dosage dramatically, ate an average of about 1000 calories for the following week. Guess what? My new 7 day average is at an all time low of 101 (including one test of a nondiabetic friend who was at 142), and there's not been a single number under 50 in there. Yee ha! Only one number over 200.

Days on which I don't eat are almost always good blood sugar days. They run low but not terribly so- rarely does fasting make my blood sugar go below 50. Eating low carb doesn't really give me the same effect- almonds and chumus can still make me soar. Skipping supper tends to make my overnight numbers remarkably stable. I think that there is something to be said for the ability of dieting to control blood sugar. OK, nothing new here, every single person you've encountered on your diabetes journey has said that.

But their message has always been this: carbs are bad for you. Don't eat sweets. Diabetes? oh you must have such a sweet tooth! Is that on your diet?
Their message is: diabetes HAS to be controlled by diet. You can't be healthy if you eat the same junk I eat.

There are major drawbacks to low carb diets. I'd rather avoid malnutrition and ketosis. Dr. Bernstein's willingness to do intravenous injections also turn me off. Sorry, but I want healhty veins to last me for decades to come. Going low calorie makes me function worse, mentally and physically, and I have a distressing tendency to get underweight. I do not want to encourage any latent tendencies towards eating disorders. Low carb is especially difficult if you happen to be a picky vegan (like me).

And while low carb's proponents claim that it's the only way to go, much in the way many pumpers tell me its the best way, the fact is that what I'm doing works for me. I'm having a blood draw for an A1c next week, and I expect it'll be around 6% plusminus .3. I haven't gotten ketotic, excursions above 200 are about a weekly occurance unless I have a cold, and Dr.Bernstein himself has more lows than I do.
Even in the last week, while not eating much, much of what I have eaten has been carbs and those have largely been juice and pedialyte, with some bread and rice cake. Not low carb foods.

My endo is a big proponent of diet, sort of. He is of the belief that it doesn't particularly matter how many carbs I eat, so long as it's about the same number, at about the same times, every day. I tell him I'm a college student with a hectic schedule and I can't do that. Sorry, man. He doesn't get upset about it, although I have the feeling he might if my craziness didn't result in A1cs below 7, because low A1cs are his other big thing.

Anyway, the cold is mostly better, probably will be all gone by my doctor visit. I'm going to be drawing charts and stuff because I like to, even though they confuse the endo. I think I've lost a few pounds since my last visit, and I'll find out if they're enough pounds to cause alarm. I have an unhappy suspicion that they will be. I'm going to tell him about my memory problems and ask for a recommendation to a neurologist, which I will use if the thiamine supplements don't do the trick. I'll have my blood drawn (he draws it himself, my endo) and call in a day or two later to find out what the A1c is. I think I'm going to ask him to run a c-peptide as well. We'll be checking to see how my meter's doing.
At the visit after this one, in November, it'll be time to renew scrips, and I think I'll be asking for a different brand of meter. I've heard good things about Jazz. It and the accu-chek are the only meters bragging about accuracy, and at least one of my three Avivas has been woefully inaccurate (see my posts from May).

Sunday, August 05, 2007


Long before I was diagnosed with diabetes, when my only diagnoses were about the function of my brain, I used to say that people should try curing fatal things like diabetes, and leave us alone.
But now I have a diagnosis of diabetes, and I can't stand the cure rhetoric. The I've had xxxx shots and xxxxx finger pricks and xxx site changes. This does not represent me. Yes, I've had at least a thousand shots and I'll hand thousands, maybe tens of thousands more. Yes my fingers sting, yes my limbs bruise. NO this is not suffering. No, this is not what needs a cure.
We need change not because little fingers bleed, not because skin is punctured, not because we "deserve" to be normal, not because children should be children. Because guess what? You coach it right and kids are proud of blood, learning great skills from doing shots, learning about "normal". This is just disability.

We need change because diabetes is a death sentence, albeit one with two lawyers and appeals to supreme courts and a long delay from sentencing to death. We need change not for kids with diabetes but for kids who are diabetes orphans. We need social change for the teenager who's ashamed for guys to see her pump; we need a cure to deal with the teenager who's dead in bed.

To me, having to take shots is like having to eat; no big deal, though often an annoyance. Monitoring blood sugar is not particularly tragic, any more than coloring is. It is time consuming. Going hypo is a little more problematic because of getting weepy, and going hyper makes me lethargic. These are livable, nontragic annoyances, disabilities maybe.

I wear my other disabilities as a part of who I am and what has built me to where I am. Diabetes too is something I wear out and proud, as a disability.

But diabetes, unlike the rest of my disabilities, is also a disease to me, because unlike my other disabilities, which change the way in which I live my life, diabetes has the potential to end my life.

I would consider diabetes cured if shots gave me perfect blood sugar control and the complication rates were nil or close to it. I would consider diabetes cured if I could wear a pump plus CGMS that could control my blood sugar entirely, even if I had to calibrate it and do site change.

The tragedy of diabetes is in DKA, ESRD, heart attacks, dead in bed, car accidents from hypoglycemia, brain aneurysms.

Dealing with diabetes day to day is not a tragedy. Dealing with diabetic complications is.