Thursday, March 31, 2011

Book Review: After the Diagnosis

Last week I checked out After the Diagnosis: Transcending Chronic Illness by Julian Seifter, a nephrologist who developed T1 D during his internship, and by Betst Seifter, his wife who I guess is more of a writer. The title and the cover made it look like a self help book, and I've read enough of those before, but I decided to try this one on account of the guy having diabetes.
And it was an interesting book. It was full of anecdotes about patients (with kidney diseases, of course) as well as a bit about Julian Seifter's history with type 1 diabetes (he wasn't interested in taking care of himself more than he needed to function day to day and currently has lost the vision in one eye, is losing the vision in another eye, and has macroalbuminuria) and his speculations about what it takes to live happily with chronic illness.
I kind of thought the book contained a lot of denial- even more than the author takes claim to. But I still liked reading it. It was fun and light reading with some food for thought (particularly about why people make the choices they make).

Thursday, March 24, 2011

Bloodwork Results

No surprises.
The A1c was up exactly as much as I guessed it would be: to 6.7%. In December it was 6.2%.
The TSH was good, 1.1.
The blood sugar they got was 53; the meter in the less than a minute before the blood draw gave readings of 58 and 59. Not nearly as bad as last time.
The vitamin D was 28.4. This is slightly lower than ideal, and my doctor's message kind of went back and forth before recommending a supplement. However, I don't think I'm going to take that advice, because it is the beginning of spring and I assume I'll be getting a lot more sunlight in the next three months than in the previous three months, and because of what happened last time I supplemented (to wit: I overdosed on vitamin D).

I asked my endocrinologist what he thought about Globe's numbers and he recommended taking Globe to a pediatric endocrinologist. So my mother will be taking Globe to a pediatric endocrinologist (Globe is in middle school). Because we want to know if he's developing any type of diabetes and if he is, what type and what to do about it.

Wednesday, March 23, 2011

Dexcom Upload and Endo Visit

Before my 10:30 appointment with the endocrinologist today, I went to upload my Dexcom data and look at reports.

This was harder than expected because I opened the Dexcom software and got error after error after error. I had to go into the controls to force quit the program. After that I tried downloading a new copy of the dexcom software and- presto magico!- it gave me the option of repairing the version I had, and did that ably. So then I uploaded my data. I had to pretend to be a new patient because the Dexcom software refuses to believe that one patient might have worn two different monitors.

The data itself was pretty disappointing. In February, I was in my target range less than half of the time (49%). My average for September was 136, October 130, November 137, December was 148, January was 148, February 160, March to date 143.
Part of that increase was probably because I started treating my blood sugar as low at 90 instead of 65. My endocrinologist said that for me, preventing those lows is worth it, assuming my A1c rose the half point I expect that it did, and not a point and a half.

My weight at the endo's was actually the same as it was in December (99 lb), so that was okay. Blood pressure was also good at 104/60. We talked about various things. In fact, we talked for about 45 minutes. I like my endo! He drew blood for TSH, A1c, Vitamin D, and probably CBC. I tested my blood sugar on my meter right before the blood draw so we could get a comparison.

Saturday, March 12, 2011

What "Preventable" Means To Me

Among the many things people with type 1 diabetes and their families are often told that I consider to be out and out false is the claim that type 1 diabetes is not preventable.


Well, if they knew that diabetes was totally genetic, they could say that. If they knew that the risks of type 1 diabetes were... well, nonexistent, they could say that.

But type 1 diabetes is not wholly genetic- there are lots of people out there who have an identical twin with type 1 but are themselves unaffected.
And there are risk factors, and continuing studies looking at more risk factors.
Also, if the rate of type 1 diabetes is not stable (and it does not appear to be) that suggests a nongenetic cause. And yes, I am aware that genetic diseases' frequency can change over time- but not as rapidly as the incidence of type 1 diabetes appears to be changing.

So I think it would be a lot more honest for a doctor to say that although it may preventable, he doesn't know how. Although I think some of the theories on the topic are worth mentioning (on that topic: Don't move to Finland, and don't introduce non-breastmilk foods to your babies any earlier than you have to).

Anyways. One of the things I find interesting about the topic of disease development is how people (particularly parents but also others) get very emotionally invested in their theories and feel personally attacked by the idea that something they or their child had might have been preventable. I don't really understand why.

I mean, let's say that people with certain genes have a 1 in 100 chance of developing type 1 diabetes if they live in the Salt Lake City vs a 1 in 1000 chance of developing type 1 diabetes if they live in rural Siberia (this is actually not a totally ridiculous assumption but it is certainly not a fact, so please don't ask me for a study). That would mean that if you had those genes and you lived in Salt Lake City and developed type 1 diabetes, there would be a 90% chance your diabetes could have been prevented.
I would feel pretty justified, in this hypothetical case, in saying that your diabetes probably could have been prevented- but I would not blame you or your parents for not preventing it. Why?
First of all, it's not very likely that you or your parents knew that you were genetically at a higher risk for diabetes (where high risk means 1% odds or greater). So you didn't know. Fewer than 20% (probably a lot fewer) of people with type 1 diabetes knew that they have any genetic or family risk factors prior to diagnosis.
Second, moving to Siberia would be a pretty drastic step to take to prevent something that has only a 1% chance of happening if you don't move to Siberia. Would you move your family to rural Siberia if there was a 1 in 110 chance that moving to Siberia would prevent one particular disease in a family member who probably wouldn't get the disease anyways? Probably not, since moving to Siberia would in fact lower your entire family's risk of asthma and lung disease, and you haven't moved there yet.
Third, there is no known way to prevent 100% of cases of type 1 diabetes (although theoretically, genetic screening of couples or killing everybody at risk before they develop it would work- I don't think these are likely to happen). So even if you knew all about your risk, and you actually were offered a nice job in Siberia, I don't know that you wouldn't have been one of the 1 in 1000 in Siberia. There's a 10% chance that you would have been, in this hypothetical scenario.
Fourth, what's done is done. Prevention does not mean that it is at all possible to reverse type 1 diabetes.

Also, not covered in my above scenarios, it's quite possible that risks for type 1 diabetes were not ones you could have avoided- for instance, if a diabetogenic virus happened to trigger your diabetes.

You may have noticed I went longer than usual between posts. My brother Globe has been in the hospital for ten days now. It's not diabetes. I am pretty stressed out. I might tell you all about it, if he gives me permission.

Wednesday, March 02, 2011


My father's big contribution to my diabetes care has always been getting me supplies. I'm insured under him, which is huge, but also he's the guy in the family whose responsibility it is to order and reorder the prescriptions that go through the insurance's mail in pharmacy (who aren't always the funnest to work with).

About a month ago, I realized that I was at the point at which I would usually re-order supplies. Not down to my last vial of insulin or anything like that, but down to a bit over a month's worth of one particular item if I used it at twice the normal speed (this is not the same as a two month supply due to the issue of expiration dates). So I mentioned this to my father but somehow I didn't get him the exact information about what needed reordering.

And a few days later he mentioned that we should reorder and a few days later I said we should but we didn't.

Saturday night we finally placed the reorder, after I opened my last vial of Novolog. It was the first time I remember ever getting that close to running out of an insulin, but I wasn't worried. My prescription says I use 20-25 units of Novolog per day. Typically I'm much closer to 20 than 25. The vials contain 300 units and last for me for about 12-15 days. The insulin typically arrives about 4 days after we order it (there was one exception when we ordered around christmastime- memo to all the mail-order noobs- NEVER ORDER PERISHABLE SUPPLIES AT CHRISTMASTIME). Anyways. I wasn't worried.

Then I developed the insulin resistance from a cold. Somehow or another, the vial of 300 units that I opened sometime on Saturday is down to 120 units left. Right- I'm using Novolog at a rate of about 45 units per day and I have 120 units left!
FedEx came today, probably with my insulin, and left a note that they couldn't deliver it 'cause we weren't home.

So I mentioned to my father that with the unusual rate that I'm using insulin, I'm gonna need more insulin soon, or else I'm going to have to go low carb or up the Lantus a lot or something (speaking of which, I upped the Lantus- 15 units didn't cut it last night but maybe tonight it will since I seem to be on the mend).
Since I'm feeling stupid and chastened and guilty over not having ordered the insulin sooner, and cutting it so close (can you imagine not having any short acting insulin?! Aaaaaaaaa (imagine the sound of a person falling off a cliff).

But my father didn't say, "That was stupid, not ordering the insulin."
And my father didn't say, "So why are you eating a sandwich now?"
And my father didn't say, "You'll have to be more responsible."

My father said, "It's a good thing you manage your own diabetes, because I can't imagine doing such a good job managing it."