Thursday, May 26, 2011

Dexcom Data (in the Butt)

I wore my 21st sensor on my left hip/buttcheek. It lasted 15 days before I pulled it due to itchiness. It was actually not functioning all that well by then but I didn't have any other sensors, so. It was surprisingly not in the way while I was doing anything but trying to go to sleep. Unfortunately, I tend to roll around a lot while trying to fall asleep- doesn't work with a sensor on the edge of my butt.
It pretty much didn't hurt until on day 4 all of a sudden I had a pretty intense muscle type pain, and after that it was sort of sore for a while. I had just been sitting on the bus and all of a sudden it really hurt.
I thought it was a reasonable success.

I received word that I'd gotten insurance approval for CGMS wear yesterday and got a couple of boxes of sensors shipped; they arrived this morning and sensor 22 is now on my other hip. So far it's been okay except it went to ??? about an hour ago, but I think that's just because it's the first day.

In sum, my sensor experiences to date:

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 and still in.

Days left in per
arm sites: 16, 21, 17, 24, 16, 7, 9, 11, 11, 21, 15 ; out of 11 sensors, the average is a bit over 15 days, and the middle sensor made it 16 days. This is a great place for sensors.
stomach sites: 13, 16, 1, 11, 14 ; out of five sensors, the average is 11 days and the middle is 13 days. The This is a pretty good place for sensors. The one sensor that did not work was placed on the side of my abdomen where I've had surgery.
leg sites: 2, 10, 2, 5 ; out of four sensors, the average is under 5 days and only one made it past a week. This is not a good enough place for sensors.
hip sites: 15; the only hip site sensor made it 15 days. I am still considering this experimental.

Why I pulled them:
Itchiness (usually combined with other reasons) - 7
Failed Sensor - 4
I didn't pull it, it pulled itself- 2 (both leg sites)
An old sensor doing worse that had not failed -2
It was just an old sensor and I was afraid to wear it past x days- 1
Did not write down reason- 5

Friday, May 20, 2011

I'm feeling crabby about the blogger breakdown, and particularly about the fact that at least five of the comments that I know were left on my posts are not back. Sorry.

I finally got my Dexcom data to upload, after attempts on three different days, on Wednesday. I was not thrilled by my numbers, particularly since my overall fluctuations lately haven't been too bad. Particularly when I put together the sheets that Dexcom wanted me to send to insurance (we're hoping I'll have coverage next week), I was struck by the fact that I've left the field blank in the notes area.

One of the weaknesses of Dexcom is that you can enter in "events," but without a computer, you can't access them. If I enter in how many units of insulin I took, it might be useful to know a month later while looking at logs, true- but it will be WAY more useful in half an hour, when I'm trying to remember how many grams of carbohydrate I should each. So I don't have much motivation to enter in "events" even when I do take a careful note of them.

But I haven't been taking a careful enough note of them. In recent months, I have frequently injected and then ate more or less than I injected for, because I either didn't count the carbs that I ate, or I forgot how much I injected (oh man, I do that a lot), or I got hungry but didn't do an extra shot, or I injected for how much I would like to be hungry for, but wasn't actually anywhere close to being that hungry.

So, anyways. Today after I bought a lot of bananas, I figured out a carb ratio. Yes, I figured out. The problem is that the ratios I could find were for bananas without skins- but I want to write the ratios on the banana skins, without peeling the bananas first. So I peeled one banana and compared the weight before and after (I was hypo anyways). I figured if the weight: carb ratio of a peeled banana is 100:21, and the weight of the banana I peeled had a ratio of 160:90 unpeeled vs peeled, then I just had to weigh the other bananas (with peels) and multiply the weight in grams by (90 times 21)/(160 times 100). So I did.

My favorite carb counting website,, appears to have been redesigned and it's not my favorite anymore. It doesn't give the carb counts by weight! What The Fructose, I say.

Dr. Bernstein recommends the Accu Chek Aviva and I continue being frustrated with Accu Chek Aviva. I'm also having trouble getting my fingers to bleed.

This is turning into a too long post. Sorry!

Friday, May 13, 2011

10 Things I Love About Diabetes

Believe it or not, I'm having a hard time picking my favorite thing about diabetes. But here are a few:

  • Studying diabetes means studying almost EVERYTHING. Within the realm of medicine, I learn about genes, nerves, veins, blood, insulin, the entire digestive system, the immune system, and so forth, with a brief foray into veterinary medicine. Within the world of politics, diabetes prompts me to learn about business, congress, the FDA and CDC, the history of medicine, drug laws, international trade and relations, diseases endemic to other places, life expectancy in general, and the list could go on forever. Within the blogosphere, diabetes prompts me to learn about social interaction, grief processes, fighting schools, the insurance appeals process, how to use the internet, etc. Learning about managing diabetes means learning about diabetes products (scores of them), nutrition, and how to understand what I read. Figuring out how to understand what I read requires learning about statistics, logic, probability, and lots of vocabulary. I could learn forever.

  • The lived experience of type 1 diabetes is something you can't choose. It has to choose you. I felt pretty special and lucky after I was diagnosed with diabetes.

  • There are always options within diabetes management. A gazillion of them!

  • The DOC.

  • The real life diabetes community.

  • Because of diabetes, I have an endocrinologist. Because my endocrinologist is really really awesome, I got diagnosed with gallstones after a decade of gallstone symptoms.

  • Diabetes got me over my fear of needles, and pushed me past my prejudices about medications. Without diabetes, I would probably have taken longer to decide to go on testosterone- and that would have been awful.

  • Diabetes gave me the experience and the confidence to know how to interact with the medical system when I needed it for other things.

  • Diabetes pushed me to think harder and deeper about what it means to be mortal.

  • Diabetes lets me win arguments about when to eat.
  • Thursday, May 12, 2011

    10 Things I Hate About Diabetes

    In no particular order

  • Bruises, scars, and trying to find a place to stick my needles. Especially with a CGMS. Ugh!

  • The cost, and feeling like I am a cost to society on account of being more expensive to keep alive.

  • Being immediately accountable for things I do.

  • Being held accountable for things I didn't do.

  • It kills people.

  • It orphans people.

  • It emphasizes class differences.

  • Sleep deprivation.

  • The necessity (?) of animal testing and use in making insulin and other diabetes medications.

  • The things it prompts me to wonder about my future.
  • Wednesday, May 11, 2011

    A Bloody Friendship

    I met my best friend when we were in high school. I was 13, and diabetes, as far as I knew, was something like an allergy to sugar.

    Nevertheless, I knew some things about blood. I was ALWAYS bleeding. Between chapped lips, fingers, and feet, nosebleeds, menstruation, and the blood inevitably showed up in my phlegm when I got sick, I saw blood every day. My friend thought it was pretty gross.
    We'd be talking about something, the war that was breaking out in Iraq perhaps, and he'd interrupt to tell me that I was bleeding and I'd tell him he was being soft and that it was no big deal.

    Although I was overall bleeding less by 17, diabetes gave me a new reason to bleed.

    I was impressed a few months after my diagnosis, when he asked to see how I checked my blood sugar.

    I took out a strip and put it in the meter. I took out my lancing device, changed the needle, poked my finger, told him it was no big deal, just a little blood, squeezed- and the blood went squirting! To add insult to injury, it continued to bleed for about five minutes. Argh!

    Tuesday, May 10, 2011

    Dear Stranger,

    Picture of a generic diabetes alert bracelet like the one by my bed right now.

    I have diabetes.

    If you see me with a needle, give me the benefit of the benefit of the doubt- I didn't choose a need for needles.

    If you see me acting drunk or passed out, give me the benefit of the doubt- I'm probably not drunk and I'd like you to try to talk to me. If I don't respond, call an ambulance.

    If you see me eating, give me the benefit of the doubt- I can eat that.

    If you have diabetes too, give me the benefit of the doubt- come up and talk to me.


    Sunday, May 08, 2011

    Bernstein Minus Diet

    I checked out Dr. Bernstein's book last week mostly because somebody had asked me something about it, but also because I've been intrigued by mentions here and there to some of Bernstein's ideas. The most famous part of his diabetes advice is a very low carb diet, which I believe I've already written about why I don't believe in.

    But mentions of his other ideas have interested me. Here are some of the other ideas that have interested me:

    - Injecting for protein. I heard about this from somebody who was not a follower of his, but who was giving her daughter insulin based on a calculation of all of the carbs minus fiber plus 1/4 of the protein in each meal. I gave that a try at the time and it didn't work but I think that was probably because I didn't get my equation right; it does make good sense that you would need to cover your protein, and I have noticed that I go high if I inject only for the carbs in very high protein foods, if I eat a lot of them (especially nuts).

    - Splitting basal shots into two shots in order to get a more consistent dose. This makes good sense, I just don't feel like taking more shots. But maybe I should. This may be part of why doing a morning and evening dose of Lantus helps some people.

    - Injecting correction doses into muscle. I'd actually heard that Dr. Bernstein injected insulin intravenously for quick corrections, but his book specifically says intramuscular. I know people who have come up with that idea on their own. Me, I think a lot of my Novolog shots end up being intramuscular just because I have very limited stores of fat. And from what I understand, whether or not an intramuscular injection will actually get absorbed faster depends on a lot of variables- it simply won't absorb as reliably.

    - The Blood to Carb Ratio per weight given in Dr. Bernstein's book does not agree with the ones given in Think Like a Pancreas. This makes me very very curious as to why they disagree.

    - Dr. Bernstein recommends some glucose meters I've never heard of. There's a phone number to call and find out which one he is recommending after the book's publication, and next time I'm home during the day (Tuesday) I think I'll call.

    - He also recommends checking blood sugar on the backs and sides of the fingers. This sounded great to me but when I tried I didn't get much blood. If you have used his method for checking blood sugar, and it worked for you, please leave a comment.

    Changing topics- I pulled the 20th sensor on Friday and took almost a 48 hour break from sensors. I put the 21st on the upper outer part of my butt. I think I'm gonna have to sleep on my stomach for a while, if I can.

    Monday, May 02, 2011

    The Gastric Emptying Scan

    I took a reduced dose of Lantus last night (went down to 9 units from 10- but a single unit does a lot these day) and set the alarm for 3 AM. Woke up at 3 AM with an SG of 269 and bg of 298, feeling moderately dehydrated. Took 1 1/2 units of Novolog by syringe and drank some water, reset alarm for 6 AM, went back to sleep.
    Got up at 6 AM, made a lunch, packed, had to think for a bit about what to wear because the nurse practitioner had asked me not to wear metal- no pants with zippers, no belt. So I found my sweatpants and then realized I'd look kind of silly with my usual dress shirts and sweatpants. Anyways.

    Took a couple buses, arrived at the Nuclear Medicine Department at 7:40. Tried to use the bathroom, couldn't. Sat around being bouncy. Got called in at 8:05. Followed the nurse to a room with a lot of equiptment and a tray with a cup of water and a cup with about a half cup of oatmeal (labeled oatmeal with sulfer something), also a fork. The nurse was not happy when I asked for the carb count, but she got it (18 grams). I took a unit of Novolog by syringe (I hope- the syringe had a zero marking that didn't look like zero). Asked if it mattered whether I drank the water or ate the oatmeal first; she said no, but eat fast. My stomach started hurting a quarter way through the cup of water, which is unfortunately something I expect when I drink more than an ounce of water. I had trouble getting all of the oatmeal with the fork, so I scooped some with a finger. The nurse was not pleased with me when she saw that, on account of me having gotten radioactivity on my fingers. So I washed my hands.

    I took off my sandals and laid down on the bed sort of thing. I had a pillow or two under my head and a pillow under my knees. The nurse asked if I wanted a blanket. I didn't. She said to lie still and not to put my hands over my stomach. I asked what we'd do if my blood sugar went low. She said it's never happened and she'd figure it out if it did. So the bed moved under (and apparently over) cameras, and I was in a tight space, two hours beginning to count down.

    The cool part: I watched the screens for two hours. The first hour, nothing happened except for a count down. The white blob of pixels stayed at the top right and top left of the screens resepctively(one screen showed the picture taken from above me, one showed the picture taken from below me). There was a very faint outline of white elsewhere- on the back screen it looked sort of like a loop. In the first ten minutes of the second hour, the pictures changed dramatically. Blobs solidified lower on the screen, and over the second hour, the pictures took the shape of two fat bottles with the original blobs as stoppers and the lower blobs like liquid at the bottom of the bottles.
    The scan ended after two hours- BEEP BEEP BEEP and the nurse came in and let me out which was good and bad- good because I needed to go pee and bad because the scan was supposed to go for longer. She said my doctor should have the results tomorrow.

    The thing that made me most annoyed was that I had spoken on the phone with a nurse practitioner on Friday. She'd told me they were in the process of going from one protocol to another, and that we'd be doing the latter. I am very much in favor of the latter protocol. But the first protocol is what was used. The nurse said that firstly, an attending who was out of town would have to sign off for the second protocol to be used, and secondly, the second protocol had not yet been adapted for a diet like mine- it had eggs and, horror of horrors- strawberry jam! I refrained from mentioning that my diet does in fact include strawberry jam on occasion.

    My blood sugar (or at least what Dexcom displayed) was excellent through the test. It showed 126 with a downward drift at the beginning, an initial "spike" to 135, a continued downward drift to 93, and then a very slow small rise in the second hour. My stomach hurt a lot and at some points I wanted to bolt up and rock, which is unfortunately fairly typical for me, both after meals and at some random times. I think my digestion was impaired both by the speed that I ate with, and by lying down. After big meals if I nap, I always wake up with vomit in my mouth.

    I am curious about whether this scan will be read as being normal, and if not, abnormal in what ways. I'm not sure what part of the screen I was watching was showing my stomach- whether gastric emptying time is the time it takes to go from that blob in the top corner of the screens, or whether it's the time until all of the food is off screen or dispersed. If it's the first of the two, I think it was delayed because there was almost nothing doing the first hour, and still quite a large blob at the end of the second hour. If it's the latter, it was definitely delayed. So maybe I do have gastroparesis.
    The diagnosis code the doctor used was GERD. I couldn't find an online reference about gastric emptying scans that confirmed the use of a gastric emptying scan in diagnosing GERD, but I would say that the scan showed that nothing was moving upwards, and that anyways my history should prove I don't have GERD- I've now been on three medications that treat GERD and none of them made me feel any better.

    Tomorrow I should have a better idea.

    Sorry I am late with that medical logic scenario I promised. I still don't have time as I am on a public computer- I just wanted to type up what happened with the scan while the memory is still really clear in my head.