Monday, September 26, 2011

Hyperglycemia Sensitivity

I woke up around 2 am, felt fine, went back to sleep without checking bg (BIG OOPS). I woke up again at 4:15 am. My mouth was very dry and my stomach hurt bad. My blood sugar was 275 mg/dl. I decided to take slightly more insulin than I thought I'd need for a correction, on the theory that it'd still take hours to come down, this would speed it up, and then I could have soymilk (I was thirsty- soymilk was on my mind). I drank three cups of water, throwing up a bit after the second cup. I then tried going back to sleep, but the pain in my stomach made it difficult. I was still awake at 5 AM. At this point, my bg was down to 196, and I was feeling much better. I fell asleep. By the time I woke up, my blood sugar was below 40 (tested after I treated, the meter read 36 mg/dl).

One thing I've been noticing is that I'm having more episodes of stomach pain while my blood sugar is high, and they seem to go away as I come down into range. This is particularly true when I wake up high. I think the highs are causing the pain and not the other way around.

This was making me think about something that anybody who spends much time reading the writings of adult type 1s online will notice; that while most type 1s have minimal symptoms while high - often nothing at all but even when there are symptoms, nothing more than thirst, dehydration, dry mouth, maybe blurry vision- others feel really bad- whether it's just plain exhaustion or vomiting. I'm talking about blood sugars in the 140 to 340 range. I often wonder what makes the difference between the groups. In my case, I suspect that the pancreatitis gets aggravated by highs, since I didn't used to have this issue. In some cases, where the person says they feel bad when they're outside a range that's tighter than most nondiabetics have, I figure the person is attributing to blood sugar something that's not really blood sugar related. Some of it, I suspect, may be an unconscious triggering of nausea from past association. But I really don't know and it seems important. I don't know if there's a name for it.

Friday, September 23, 2011

Insurance's Money

My Dexcom system is a month out of its one year warranty.

So when a Dexcom sales person called and asked me if I needed new sensors (I don't, I have three unopened ones), I told her that I wanted to know what would happen if my current Dexcom broke- would I need to buy the whole new system, would we need to go through the whole process with insurance again, what?

So she said she'd have somebody do an investigation of benefits and call me back. The next day I got home from work to find a message on my answering machine that said good news, I was covered at 100%, and she'd gotten all the paper work, and my new system was ready to ship.

Only problem? I don't need a new system now. And I'm not interested in wasting money- not mine, not my insurance company's. So this morning I spent nine and a half minutes (seemed longer than it looks typed) arguing with the sales person at Dexcom, who was trying to convince me that the system was free to me, that it would be worth it to insurance for me to have a backup so as not to go a day without a system because I would be hospitalized without it (yeah, fucking, right- not). She said I couldn't know if my transmitter was failing. She also tried to convince me it was worth having my insurance company pay for a new system now because I would get a new case for the Dexcom. She emailed me a picture. It's a nice case. It also would cost a mere ten dollars if I want to buy it, whereas insurance would be paying in the neighborhood of a thousand dollars.
In the end, I managed to insist that I don't need a new system now and that I'll call when I do (or in December, so I don't have to do the process all over again).

It got me thinking about something, which I don't believe I've written directly about, but which is often on my mind. I believe in spending the insurance company's money as if it were my own, and I don't waste my own money, so I'm not going to waste theirs. If I wouldn't be willing to buy a particular thing for a person in my position if the money was mine, I'm not going to ask insurance to pay for it for me. I think that's the most moral position to take.

My best friend doesn't share my morals (frankly, nobody shares all of my moral values). He argues that insurance companies are for-profit companies, trying to squeeze me for my last dollar, and that they wouldn't hesitate to cheat me- so I should cheat back. Sometimes, particularly when I was being denied CGMS coverage entirely on the basis of my age, this made some sense to me. But I've never believed that I should lie when I am talking to a liar, and I don't see a value in cheating a cheater. I prize my honesty, what I've got of it.
Secondarily, the way I see it, some of the costs of whatever I use will trickle down to me, sooner or later. If insuring me costs more, perhaps I will pay more for insurance later on- and if I don't, well, the cost of insurance in general will have to be higher if people buy more medical things with it.

In real life, this has translated to being part of why I didn't use a pump four and a half years ago, although at this point I see more reasons. It's a part of why regular is so appealing to me. It's also something that sets me a bit apart from a lot of the diabetes community- because I have never ever seen this desire to save insurance money mentioned. Not once.

Friday, September 16, 2011

Invisible Illness Meme

1. The illness I live with is: ooh, tough one. I'm a diabetic. But I also live with chronic abdominal pain, dementia, and other stuff.
2. I was diagnosed with it in the year: I was diagnosed with diabetes in 2006. I was diagnosed with gallstones in 2008. I was diagnosed with thyroiditis in 2008.
3. But I had symptoms since: I started having symptoms of diabetes in the 2001-2002 schoolyear. I don't remember which year it was. I started having acute abdominal pain in early 1999. I first showed signs of autism within a month or so of my birth, in 1988. I was first tested because of signs of thyroid disease in 1998.
4. The biggest adjustment I've had to make is: For diabetes, dealing with electronics on the sabbath, staying inside the boundries on the sabbath. For the memory problems, writing everything down because I don't remember them, accepting that I don't remember things. For the pain... learning to live with pain, I guess.
5. Most people assume: That how I'm functioning today is a good indication of how I will function tomorrow.
6. The hardest part about mornings are: Most of my mornings are not hard.
7. My favorite medical TV show is: I am terrified of TVs and have never watched a medical show on TV.
8. A gadget I couldn't live without is: I could survive without gadgets, I think. Unless a needle counts as a gadget.
9. The hardest part about nights are: losing sleep to night terrors, hypoglycemia, and hyperglycemia.
10. Each day I take _ pills & vitamins: I take no pills and no vitamins. I take 2-12 shots of insulin, 0-1 shots of testosterone, 0-1 new sensors, 2-12 blood sugar checks, and okay, some glucose.
11. Regarding alternative treatments: The placebo effect is powerful.
12. If I had to choose between an invisible illness or visible I would choose: When my differences are too invisible, and people tell me I don't look like I have them, I seethe. And when I tell people, and they've already guessed, I also seethe. I wish I could come out when I want to and have people always believe me... and diabetes is the only one of my issues for which that usually is how it happens.
13. Regarding working and career: My illnesses make it hard to plan, and my memory and energy problems have made it hard, too. I had real difficulties student teaching because I got overwhelmed, my visual processing stopped working, and I couldn't see anything at all for minutes at a time during class. But I'm currently working numerous part time jobs and have high hopes for a career.
14. People would be surprised to know: that I don't really mind this.
15. The hardest thing to accept about my new reality has been: that I have no memory of the "old" reality. (Quote from Kerri but true for me too)
16. Something I never thought I could do with my illness that I did was: I never thought it would certainly stop me from anything.
17. The commercials about my illness: usually are for things I don't need.
18. Something I really miss doing since I was diagnosed is: Taking long sabbath walks.
19. It was really hard to have to give up: My desire for total self sufficiency.
20. A new hobby I have taken up since my diagnosis is: Searching pubmed.
21. If I could have one day of feeling normal again I would: I think I do have days of feeling normal, lots of them.
22. My illness has taught me: To let go.
23. One thing people say that gets under my skin is: "I could never do that." Like I have a choice! Like I should choose to die! I also hate, "I know how you feel." No, you don't. Not even if you had all of my diagnoses, you wouldn't.
24. But I love it when people: Ask good questions.
25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 23, verse 4: Gam ki elech, b'gai szalmavet, lo eera ra, ki ata imadi / And though I pass in the valley of death's shade, I will not fear bad, for you are with me.
26. When someone is diagnosed I'd like to tell them: You got questions, I got pubmed.
27. Something that has surprised me about living with an illness is: That it's really not a one-per-customer kind of deal. I kind of thought once I had diabetes, diabetes was gonna be the main illness in my life, for life. Not so.
28. The nicest thing someone did for me when I wasn't feeling well was: Visit me in the hospital.
29. I'm involved with Invisible Illness Week because: I wanted to blog something and Kerri of sixuntilme posted this meme
30. The fact that you read this list makes me feel: A little exposed.

Sunday, September 11, 2011

A Year of Sensors

Well, in one year on the Dexcom, I started 32 sensors. I just finished that 32nd one today. I think the summer sensors were not as hardy- a lot more err1s recently. The most recent one didn't quite fail but after working almost perfectly for two weeks, the very last calibration was really off- the Dexcom said something like 140 and the meter said 281 (295 on recheck). So I pulled it. Sensor number 33 is off to a bad start- it's been in for about two and a half hours but has been showing ??? for the last hour.
In one year, I had two sensors actually replaced, because they never worked. Both were placed in my right abdomen, were I've had surgery, although I did my best to stay away from the scars. The first one I waited about 12 hours for with no luck; the second one I gave up on after only four hours because it was the day I was going to leave for a weeklong trip and I wanted to leave with a good sensor.
The receivers I've had replaced twice, meaning I'm on the third one. One had to be replaced because it totally stopped working; the other simply stopped beeping. Interestingly enough, none of the three have had accurate internal clocks. The first two simply kept losing time- I'd set them to the right time but they'd be off by a minute after a week or so, and in a month they'd be off by three minutes. The current one seems to both lose and gain a minute here and there.
I'm still on the original transmitter. I think it transmits a bit less further than it did six months ago, but I'm not really sure.

Anyway, here's how long I wore each sensor:

Sensor 1 left arm, inserted Sept 1 removed Sept 17 due to itchiness
Sensor 2 left abdomen, inserted Sept 19 removed Oct 2 removed because it failed
Sensor 3- left leg, inserted Oct 2, ripped out Oct 4
Sensor 4- left leg, inserted Oct 4, failed Oct 14
Sensor 5- left arm, inserted Oct 14 removed Nov 4
Sensor 6- left abdomen, inserted Nov 4 removed Nov 20
Sensor 7- right leg, inserted Nov 20 ripped out Nov 22
Sensor 8- right arm inserted Nov 23 removed Dec 10 due to itchiness
Sensor 9- right leg, inserted Dec 10 failed Dec 15
Sensor 10- inserted Dec 15, removed Jan 8th due to itchiness
Sensor 11- inserted on Jan 8th, removed Jan 9th because it didn't work at all
Sensor 12- right arm, inserted Jan 10th removed Jan 26th (itchy and ???)
Sensor 13- left arm, inserted Jan 26, removed Feb 2
Sensor 14- left abdomen, inserted Feb 2, took out Feb 13
Sensor 15- right arm, inserted on Feb 13, pulled Feb 22- the Dexcom receiver broke while I was wearing this sensor and I had to take the transmitter off while wearing the sensor in order to read the number on in, and the adhesive was just not sticking well- this was not a good sensor experience
Sensor 16- left arm, inserted on Feb 22, pulled Mar 5
Sensor 17- left upper abdomen, started on Mar 5, pulled on Mar 19
Sensor 18- right arm, started on Mar 20, pulled on the 31st due to itchiness
Sensor 19- left arm, started on Mar 31st, pulled April 21st at the three week mark- didn't think it was worth a restart because of ??? episodes a false low the previous night
Sensor 20- right arm, started on April 21, pulled it May 6 because of poor function
Sensor 21- left hip, started on May 8, pulled in May 23 due to itchiness.
Sensor 22- right hip, started May 26, pulled June 2 due to error 1.
Sensor 23- right arm, started June 3, pulled June 10 due to err 1 on restart.
Sensor 24- right arm?, started June 10, pulled June 19 due to itchiness and inaccuracy.
Sensor 25- right abdomen, started June 19 pulled July 3
Sensor 26- left abdomen, started July 3 pulled July 17 because the adhesive wasn't holding and it was itchy
Sensor 27- left arm, started July 17, pulled July 26
Sensor 28- right arm? started July 26 pulled August 7
Sensor 29- right abdomen, started August 7, didn't work at all, pulled August 7
Sensor 30- right abdomen, started August 7, pulled August 17 due to Err 1
Sensor 31- left abdomen, started August 17, pulled August 28
Sensor 32- left arm, started August 28, pulled Sept 11 due to itchiness and sudden inaccuracy

Days per sensor:
arm sites: 16, 21, 17, 24, 16, 7, 9, 11, 11, 21, 15, 7, 9, 9, 12, 14
abdomen sites: 13, 16, 1, 11, 14, 14, 14, 0, 10, 11
leg sites: 2, 10, 2, 5
hip sites: 15, 7

Why I pulled them:
Itchiness (usually combined with other reasons) - 10
Failed Sensor - 8 (Includes 2 that never worked, one that worked but failed in under a week, and five that failed after a week)
I didn't pull it, it pulled itself- 2 (both leg sites)
An old sensor doing worse that had not failed -6
It was just an old sensor and I was afraid to wear it past x days- 1
Did not write down reason- 8

Friday, September 09, 2011

Finished: One Vial Regular

I woke up a couple of weeks ago with a Dexcom reading of 362, and my Accu Chek aviva concurred with a 361. Since I clearly had some time to wait before my blood sugar would be in a breakfast worthy state, I decided to log my blood sugar on the hour, as well as when and how much carbs I ate, after taking my breakfast shot of regular. I'd been wanting to figure out exactly how potent Regular was, by itself and in comparison to Novolog.

I constructed a formula for retroactively finding my insulin sensitivity/carb ratio for a particular shot.
For the times that I did this, I computed my retroactive insulin to carb ratio like this: I took the blood sugar reading right when I did the shot (I counted a Dexcom reading as a blood sugar reading, usually). I took the blood sugar reading exactly four hours later. I counted all of the carbs eaten in those four hours, including hypo treatments. I assumed a BCR of 5.
Then my retroactive I:C was as follows- ((Starting BG - Ending BG)/5 + carbs)/units injected.

I did not include any times if I had to give another shot within the four hour period, if I had eaten in the hour before the shot, or taken another shot in the four hours prior or if I just didn't document all the stuff above.

I ended up doing this computation for eight breakfasts with regular. The retroactive four hour I:Cs were: 6.06, 6.5, 6.63, 7.7, 8.5, 6.0, 6.375, and 6.5.
This is much more consistent than expected and the standard deviation is small enough that I should be able to compare this to Novolog fairly confidently. The consistency suggests to me that I picked the right BCR.

I only did this computation for three lunches, partly because I often don't take insulin for lunch or don't eat lunch. The retroactive I:Cs for those were 16.4, 11, and 22. Clearly all higher than breakfast, but that's about all I can say.

Dinners I almost never did this for because I tend to eat foods for dinner where I can't get a good carb count but I suspect the numbers would have been very variable. The only dinner I did do this for, I got a 14.4.

I sort of kept an eye on how this worked for corrections and my feeling is that for morning corrections, the morning ISF of 30 (which is the same as an I:C of 6 if my BCR of 5 is correct) worked well. For the rest of the day I used an ISF of 75 (which translates to a I:C of 15) and that was usually a bit stronger than I needed, but sometimes in the evenings it wasn't enough.

Yesterday the vial of Regular ran out and I'm back to Novolog. I intend to collect data on the Novolog too, to see if it works at the same strength as Regular. I suspect that the Novolog will prove to be slightly stronger. I think next time I go back to Regular (which I plan to do in October) I'm going to try to look at the 5 hour data as well, but that will be harder because spacing shots that far apart and also it introduces more of the basal variability.

P.S. After posting, I decided this was not very easy to understand. So let me give an example.
At 8 AM on Tuesday morning, my blood sugar was 138. I took 12 units of Regular, and ate 38 grams of carbohydrate. At 9 AM my blood sugar was 125. At 10 AM my blood sugar was 117 and I ate another 38 grams of carbohydrate. At 11 AM my blood sugar was 117 again and at noon my blood sugar was 103.
In a four hour period, my blood sugar fell 35 mg/dl, and I ate 76 grams of carbohydrate. To have kept my blood sugar totally stable, I would have needed to eat enough to stop the 35 mg/dl fall. I assume one gram of carbohydrate raises my blood sugar by 5 mg/dl, so I would have needed to eat 7 more grams. 76+7= 83. I would have needed to eat 83 grams of carbohydrate to have stayed stable with the 12 units of Regular I took. Pretending that basal issues don't exist, that means that to stay stable, I needed 12 units per 83 carbs, which is 1 unit for every 6.916 grams of carbohydrate.
So my retroactive I:C for that four hour period would have been 6.916.
I could also calculate that as a retroactive insulin sensitivity factor just by multiplying by 5, since I'm assuming one gram of carbohydrate raises me 5 mg/dl. Then I would assume one unit would have lowered my blood sugar by 34.583 mg/dl that morning.

Thursday, September 01, 2011

Looking Back, Looking Forward

On this day in 2006, I was diagnosed with diabetes, and I received exogenous insulin for the first time.
In 2007, 2008, 2009, and 2010, on this day, I remembered and commemorated that day. I felt the feelings that I had felt that first day, and I knew how far I had come, and how far I hadn't.

This year is different. This year, I don't remember being diagnosed with diabetes. I don't remember what it felt like to be in DKA. I don't remember what it felt like to have an IV in each arm. I don't remember the thirst. I don't remember the beeps. I don't remember how I felt.

That's not to say that I can't tell you how it felt or what it was like- I can. I know it like a favorite poem that I've performed a hundred times. But I don't know it like it happened to me.

Some of this, I think, is just normal fading of memory. Some of it is not. Between roughly July 2006 and July 2007, I lost the vividness of all of my memories. I lost the entirety of a lot of my memories. I lost the ability to bring up the knowledge that I wanted at will, which destroyed a lot of my function. I lost the ability to orient myself and was continually, perpetually lost. Then I started recovering. I recovered the ability to play chess. I improved a lot in my ability to recall things. I improved in my perception of time. My spelling recovered, and I was able to read books again. I wasn't as tired.

Today, I remember yesterday, vividly. I remember bits and pieces of things from the past fifteen months or so, some things that stand out. Everything else that I remember is just knowledge- I remember it like I read it, like it happened to somebody on TV. But boy, I do know a lot!

On this day in 2010, I started on the Dexcom system. I hope tomorrow to set it up with an amplifier. The Dexcom may or may not have really improved my over all blood sugar control.
In my 1st year on insulin, my A1cs were 16+%, 6.5%, 6.3%, and 6.3%
In my 2nd year on insulin, my A1cs were 6.4%, 7.0%, and 6.3%
In my 3rd year on insulin, my A1cs were 6.6%, 6.9%, 7.2%, and 6.4% (the rise occurred on the Guardian- I also had my gallbladder removed and had thyroiditis in this year).
In my 4th year on insulin, my A1cs were 7.1%, 7.0%, 7.0% and 6.6% (I had acute pancreatitis in this year- also had tendinitis that prevented me from walking).
In my 5th year on insulin, my A1cs were 6.2%, 6.6% and 7.0% (I also had a 6.1% fingerstick A1c towards the beginning of the year- I had less severe abdominal issues in this year).

This summer, my blood sugar stabilized a lot, for no reason I can be certain of, and I expect my next A1c to be below 6.5 for sure, maybe a lot below 6.5.

Some other things I did differently this year, or that I did for the first time in my diabetes management, include a new insulin that is only new to me- Regular, using a Bayer A1c, using 4mm pen needles, using the ketodiastix, using a blood ketone meter (NovaMax).

This was a pretty good year for me in terms of medical issues, compared to the past few years. I continue to have stomach problems, but they are not as bad as in past years. I had some testing done but no diagnosis. My weight this year was below 100 pounds the entire year, but it never measured lower than 96 pounds, so that's pretty stable, although the skinniest I've been since September 2006. I had a number of bizarre blood test results (think prolactin, vitamin D), but nothing that required me to do anything. I had no inpatient hospitalizations.

Going into my sixth year on insulin, I am more worried about fasting. I have been dramatically more ketone prone this year. I am less worried about my kidneys- my renal threshhold seems to have gone up sometime between the fall of 2007, when I tested it as being around 155, and now, when it seems to be around 190. I am more concerned about insulin absorption and scarring. I'd like to improve my injection technique.
I am hoping to break into the 5% club (people with A1cs between 5 an 6 percent) but would be reasonably satisfied with a year that sets no new personal records- no A1cs above 7.2%, no lows below 22, no diabetes related hospitalizations.
I am hoping to use the amplifier to wake up in the nights with my highs and lows, especially because waking up above 300 now means that I also wake up ketotic, in pain, and sometimes vomiting.
I am going to continue experimenting with both Novolog and Regular. By the end of the year, I will probably have decided that I like one or the other better. So far, just taking notes to help with my experimenting is improving my understanding of how the insulins work in my body.
I don't know if I will stay on the Dexcom. I think that I will, because my insurance is now covering it, and I don't expect the new minimed sensors to be available in the US anytime soon, and Abbot is officially removing the Navigator from the market. Also, my fingers swell up if I check my blood sugar much.

Today is also diabetes art day. The past few months I've been playing with the idea of characters inside a Dexcom illustrating glucoasters. One such drawing is on this blog a couple months back. But I haven't developed anything I want to post today. Sorry.

And now it's a bit past midnight... five years ago I was in an ambulance being transported from one hospital to another. Tonight I'm sitting in my own living room. Five years ago I was getting my insulin by an IV drip (regular, I think, at about 2u/ hr). Today, I took three only three shots of insulin- 14 units Regular with breakfast, none with lunch, 10 units Regular with supper, and 9 units Lantus. Five years ago, my lowest blood sugar of the day was about 260 mg/dl, after seven hours on insulin. Today, my highest blood sugar was about 260- a brief I-started-breakfast-before-injecting spike.

This past year was true to life- a mixture of healthy and not so much, conscientious and not so much, happy and not so much, peaceful and not so much. May the next year bring much.