I've been mulling it over for awhile, but now that I've got more experience with A1c numbers, I'm certain. The 5.1% A1c I had in May is wrong, wrong, wrong. Also, wrong.
How do I know? Well, back in March of last year, my fastings were very low normal and I had hypoglycemia every afternoon. My blood sugar was only elevated for two hours after eating and it was numbers like 140 or 160. My A1c at that time was 5.3%. My numbers steadily climbed and when I had another A1c done in January of this year, it was 5.8%. Then, my numbers went up even more, especially my fasting which went up by 10 points. My blood sugar stayed higher for much longer after meals. So, what was my A1c in May? 5.1%. So, you see, there's no way that can be correct. If anything, it should have been 6.1%. It was done at a different lab than the first two, but that's a really big variation. I'm not sure what happened at the lab of course, but if they mixed my sample up with someone else's they might suddenly find they're diagnosed diabetic!
I'm concerned because when a doctor sees that, they tend to assume the number is right (wrong), that I had great control on oral meds (wrong), that I shouldn't have gone on insulin (wrong). Unfortunately, I can't just stamp "wrong" right on the results. Hopefully I can convince the new endo, though.
Friday, October 27, 2006
Thursday, October 26, 2006
More plodding
Well, I got an appointment with the new endo: November 29th. Two days ago they said they were scheduling in mid-November. I guess I drew the short straw. After some reflection I called my GP's office and asked them to order all the labwork. Otherwise I'd just be wasting the endo's time and I'd have to come back (in 1-2 months, no doubt) to really get anywhere. They said okay and scheduled me for Monday. I will have to confirm on Monday that they ordered an A1c, C-peptide, Islet Cell Antibodies, and Anti-Insulin Antibodies, which is what I asked for. If it shows something useful, I can try to get the insurance to pay for a pump. That's starting to look better and better as time goes on and none of us has a job yet!
J. ran out of Lantus this week. He only found out after the pharmacy tried to reach his doctor in Tucson that she'd left the clinic. Because of that no one there would authorize a refill! And of course only R and NPH are available without a prescription. He was unable to track down the old doctor and he can't get in to see a new one until the 30th. I can't believe this, that they would deny insulin to a diabetic! He had a bottle of UL from a couple years ago (but not expired) and he's been taking that, but imagine if he hadn't or if he'd thrown it out when we moved. Aargh.
J. ran out of Lantus this week. He only found out after the pharmacy tried to reach his doctor in Tucson that she'd left the clinic. Because of that no one there would authorize a refill! And of course only R and NPH are available without a prescription. He was unable to track down the old doctor and he can't get in to see a new one until the 30th. I can't believe this, that they would deny insulin to a diabetic! He had a bottle of UL from a couple years ago (but not expired) and he's been taking that, but imagine if he hadn't or if he'd thrown it out when we moved. Aargh.
Thursday, October 19, 2006
Are we there yet?
I've been busy! Just kidding, not really. I found a new primary care doctor. He seems to be working out great, but it's hard to tell for sure with only one visit. I haven't heard back from the Diabetes Care Clinic, so I asked him to refer me to the endocrinologist he normally works with. I heard she went to Harvard and she's really nice.
I talked to a pump rep and ended up attending a Minimed class on Tuesday. It was listed as CGMS and one hour, but it was actually "Advanced Pump Skills" and it went 2.5 hours. I was amused that all the diabetics had to wait to eat dinner. I didn't really learn anything new in the class, though, and the length meant that I didn't have time to stick around afterwards and have my questions answered. For example, is clogging really something I would need to be concerned about, since I don't have a basal right now? I already asked people if I could program a pump to do what I do and the short answer is not really. I could try doing a dual wave bolus, but it might not have the same action profile, or I could do it manually but I would still have to remember when to bolus. I did the pump school online, but I haven't done the finetuning one yet.
I reviewed my insurance coverage again, and discovered that their policy actually says you must have a positive GAD65 test or a C-Peptide below 1.2 (range: 1.1-5.0). I think the chances of the former are pretty slim since I've had three negative ones. Clearly they don't care about the other two types of antibodies. I don't know how soon I'll reach the second one; my last one was 2.4 in June. Of course it should be lower now that I'm on insulin. I just don't know if I want to wait a year, though.
I finally met someone online who had a progression similar to mine! She had hypoglycemia originally (so did I), she then had really high postprandials but was diagnosed as Type 2 (me, too). Her C-Peptide was a bit high (mine, too). Then at some point (I should find out when), her fastings started going up and she lost that, too, pretty quickly. She went to a new endo when her fastings went up. She had another C-Peptide then and it was 2. The endo said she was definitely a Type 1 and put her on insulin. Two months later, she was on a pump. Her GAD65 was negative and she never had another C-Peptide since the endo thinks it's pointless. Scary how similar that sounds; too bad I can't see her endo. So, it looks more and more like I might have LADA. If so, I can expect that at one point, my control will deteriorate pretty quickly so that I need a basal insulin. Since I can already see patterns (like the afternoon hypoglycemia I still have even with no active insulin), I don't know how enthused I am about Lantus. I think I'd do better on the pump.
I talked to a pump rep and ended up attending a Minimed class on Tuesday. It was listed as CGMS and one hour, but it was actually "Advanced Pump Skills" and it went 2.5 hours. I was amused that all the diabetics had to wait to eat dinner. I didn't really learn anything new in the class, though, and the length meant that I didn't have time to stick around afterwards and have my questions answered. For example, is clogging really something I would need to be concerned about, since I don't have a basal right now? I already asked people if I could program a pump to do what I do and the short answer is not really. I could try doing a dual wave bolus, but it might not have the same action profile, or I could do it manually but I would still have to remember when to bolus. I did the pump school online, but I haven't done the finetuning one yet.
I reviewed my insurance coverage again, and discovered that their policy actually says you must have a positive GAD65 test or a C-Peptide below 1.2 (range: 1.1-5.0). I think the chances of the former are pretty slim since I've had three negative ones. Clearly they don't care about the other two types of antibodies. I don't know how soon I'll reach the second one; my last one was 2.4 in June. Of course it should be lower now that I'm on insulin. I just don't know if I want to wait a year, though.
I finally met someone online who had a progression similar to mine! She had hypoglycemia originally (so did I), she then had really high postprandials but was diagnosed as Type 2 (me, too). Her C-Peptide was a bit high (mine, too). Then at some point (I should find out when), her fastings started going up and she lost that, too, pretty quickly. She went to a new endo when her fastings went up. She had another C-Peptide then and it was 2. The endo said she was definitely a Type 1 and put her on insulin. Two months later, she was on a pump. Her GAD65 was negative and she never had another C-Peptide since the endo thinks it's pointless. Scary how similar that sounds; too bad I can't see her endo. So, it looks more and more like I might have LADA. If so, I can expect that at one point, my control will deteriorate pretty quickly so that I need a basal insulin. Since I can already see patterns (like the afternoon hypoglycemia I still have even with no active insulin), I don't know how enthused I am about Lantus. I think I'd do better on the pump.
Saturday, October 14, 2006
And so it goes
I was somewhat stunned to discover that letting Calorie King's software count carbs for me is way more accurate than I was with my Calorie King book and my own judgment, but the numbers don't lie. I know that they can't account for variations in preparation, etc., but there you have it. Here's what I do to improve accuracy:
- choose the portion measurement that I can eyeball (like cups) (CK calculates nutrition information automatically for whatever amount you enter!)
- subtract fiber from carbs when eating high fiber meals
- enter the information in my database when it's not in CK and I have a food label
- choose a close equivalent if no information is available or enter each ingredient
- if the equivalent isn't accurate, enter the food manually with the right amount of carbs
- weigh foods when I'm at home or weigh out portions and put them in bags for later
I know that this is more work than most people are willing (or able) to do, though. I find that I really have to stick to it to maintain good control, though. I recently saw that Calorie King had diabetes software from the Palm, so I downloaded. It's basically like Diabetes Pilot except with a few broken things and fewer features. So: not recommended. It's too bad, too, because having the food diary talk to the diabetes software would have been wonderful...if it worked.
Other than that, I've just been plugging away. I sent off my self-referral packet to the Diabetes Care Center. They will review my case and call to tell me when and with whom I can get an appointment. I made a reservation to attend a Minimed seminar next week. We finally unpacked the scale and I discovered I'd gained 6 lbs! I'm back on my exercise regimen this week, though, so it had better all come off.
What's everyone else up to? It seems a bit quiet out in the blogosphere.
- choose the portion measurement that I can eyeball (like cups) (CK calculates nutrition information automatically for whatever amount you enter!)
- subtract fiber from carbs when eating high fiber meals
- enter the information in my database when it's not in CK and I have a food label
- choose a close equivalent if no information is available or enter each ingredient
- if the equivalent isn't accurate, enter the food manually with the right amount of carbs
- weigh foods when I'm at home or weigh out portions and put them in bags for later
I know that this is more work than most people are willing (or able) to do, though. I find that I really have to stick to it to maintain good control, though. I recently saw that Calorie King had diabetes software from the Palm, so I downloaded. It's basically like Diabetes Pilot except with a few broken things and fewer features. So: not recommended. It's too bad, too, because having the food diary talk to the diabetes software would have been wonderful...if it worked.
Other than that, I've just been plugging away. I sent off my self-referral packet to the Diabetes Care Center. They will review my case and call to tell me when and with whom I can get an appointment. I made a reservation to attend a Minimed seminar next week. We finally unpacked the scale and I discovered I'd gained 6 lbs! I'm back on my exercise regimen this week, though, so it had better all come off.
What's everyone else up to? It seems a bit quiet out in the blogosphere.
Friday, October 06, 2006
Being tired
Lately I've been feeling...not exactly burnout, but it's more like I'm just tired of all this management. We finally went out to about five different stores and bought a bunch of food yesterday today - exhausting in and of itself. Yet this will allow us to eat more meals at home and not have to eat out all the time. Since I'm a vegetarian, my low carb options are pretty limited, and then of course I love french fries. Still, I can only cover 49 grams of carbs initially (3.5 units), and if I eat more than that, I have to take another 1.5-2 units every 30-45 minutes. So, that means that a meal with 135 grams of carbs requires four injections to cover over the course of two and a half hours. I was handling that okay before we moved since it was very occasional, but with one or two meals a day like that, I guess I did start getting a little burned out. This is even with avoiding things like rice, pasta, and mashed potatoes. If I'm going to eat something, it has to really be worth the insulin.
I've also been feeling a bit isolated. This wasn't affected by moving, though. Whenever some other diabetic sees me somewhere testing my blood sugar or what have you, the first question they ask is "what type are you?" And I never know what to say to help them understand. There's no shorthand or helpful box for me. A friend suggested I join a diabetes support group so that I'd have someone to talk to, but the reality is that there aren't support groups geared toward people like me. I have more in common with Type 1s than Type 2s, but I don't think that they'd want me, either. And I just can't see myself sitting in a Type 2 support group saying I have no trouble avoiding sugar and I've been trying to gain weight most of my life - and I do think it would be totally justified if they felt uncomfortable. The other day, I joined a new forum and no one replied to my introduction post. It seems silly that something like that should bother me, but it somehow just underscored that I'm alone. It's kind of odd - my unusual medical conditions (dysautonomia, costochondritis, among others) never made me feel the way diabetes does. It was perfectly okay to be the only person in a 1000 mile radius with some condition and I never minded it. With diabetes, though, I just want to have something in common with someone else.
I've also been feeling a bit isolated. This wasn't affected by moving, though. Whenever some other diabetic sees me somewhere testing my blood sugar or what have you, the first question they ask is "what type are you?" And I never know what to say to help them understand. There's no shorthand or helpful box for me. A friend suggested I join a diabetes support group so that I'd have someone to talk to, but the reality is that there aren't support groups geared toward people like me. I have more in common with Type 1s than Type 2s, but I don't think that they'd want me, either. And I just can't see myself sitting in a Type 2 support group saying I have no trouble avoiding sugar and I've been trying to gain weight most of my life - and I do think it would be totally justified if they felt uncomfortable. The other day, I joined a new forum and no one replied to my introduction post. It seems silly that something like that should bother me, but it somehow just underscored that I'm alone. It's kind of odd - my unusual medical conditions (dysautonomia, costochondritis, among others) never made me feel the way diabetes does. It was perfectly okay to be the only person in a 1000 mile radius with some condition and I never minded it. With diabetes, though, I just want to have something in common with someone else.
Sunday, October 01, 2006
Meme time
1. Do you still have tonsils? Yep.
2. Would you bungee jump? Oh, no. I think my nerves and joints have had enough stress for this lifetime.
3. If You Could Do Anything In The World For A Living What Would It Be? Write.
4. How many tattoos do you have? None. Since my skin already hurts to be touched, I can't imagine touching it with a needle.
5. Your favorite fictional animal? Opus!
6. One person that never fails to make you laugh? Stephen Colbert.
7. Do you consider yourself well organized? Yes and no. I'm completely anal about organising because I am so bad at it, if that makes sense.
8. Any Addictions? I really try to stay away from those things, since I have an addictive personality.
9. From what news source do you receive the bulk of your news? I subscribe to the newspaper because I need a physical paper to read, but I also get pointed to various news stories by the internets.
10. Would you rather go to a carnival or circus? Probably a carnival since circuses are kind of cruel.
11. When you were twelve years old, what did you want to be when you grew up? A Fly Girl. Ok, mostly a writer.
12. Best Movie You've Seen This Year? Kiss Kiss Bang Bang.
13.Favorite alcoholic drink? Enh, I don't drink anymore.
14. What is the first thing you do when you wake up in the morning?
15. Siblings? My father had two or three other children. My mother has three. They're all younger than me.
16. What is the best thing about your job? Well, I'm currently unemployed, so probably not having to go to it.
17. Have you ever gone to therapy? Yes, but the therapist wasn't very good.
18. If you could have one super power what would it be? The ability to reallocate resources from the richest 5% to...
19. Do you own any furniture from Ikea? Surprisingly, no.
20. Have you ever gone camping? Yes, and I mostly like it (assuming we're not sleeping directly on the ground like my parents always did), but sadly the last time we went, it was way too cold, windy, and rainy for me.
21. Gas prices! First thought?Why did they kill the electric car? I don't drive, but it does affect me. Other countries and Hawaii have to pay more already, though.
22. Your favorite cartoon character? CatDog. Ok, I just like the theme song.
23. What was your first car? Never had a car.
24. Do you think marriage is an outdated ritual? Yes and no. I think there's this whole cult based around the ceremony, etc., but less attention is given to the actual relationship.
25. The Cosby Show or the Simpsons? I loved the Cosby show growing up. The Simpsons were great, but I think they jumped the shark a couple of seasons ago.
26. Do you go to church? Not since high school (I went to Catholic school). I'm leaning more towards (small u) unitarianism at the moment.
27. What famous person would you like to have dinner with? Johnette Napolitano or Vincent D'Onofrio.
28. What errand/chore do you despise? Cleaning my own house. However, I was a housekeeper for many years and I have no trouble cleaning other people's houses. I don't get it, either.
29. First thought when the alarm went off this morning? I accidentally left my cell phone on vibrate, so I slept through it.
30. Last time you puked from drinking? 1994, and it was on purpose. Heyy, one of these questions is not like the others!
31. What is your heritage? German (5/8), French (1/4), and Norwegian (1/8).
32. Favorite flower? I think it's Arabian jasmine, but I haven't actually identified it yet.
33. Disney or Warner Bros? Warner Bros, by a hair.
34. What is your best childhood memory? Totally random: my (late) aunt Caroline, pregnant, sitting on the bathroom floor and playing "The Sweetest Thing" to practice for a gig.
35. Your favorite potato chip? Terra Pommes Frites? Ok, ok, Terra Red Bliss with Herbs. I've never really liked potato chips (sorry). Now, curry chips...
36. What is your favorite candy? Good'n'Plenty.
37. Do you burn or tan? I go from 0 to red in 15 minutes.
38. Astrological sign? Pisces, but I feel compelled to mention that my ascendant is Aquarius and I have three planets in Aries.
39. Do you own a gun? Nope.
40. What do you think of hot dogs? Never liked the meat ones and I haven't had one since 1990. I like the tofu ones with ketchup and sweet relish.
2. Would you bungee jump? Oh, no. I think my nerves and joints have had enough stress for this lifetime.
3. If You Could Do Anything In The World For A Living What Would It Be? Write.
4. How many tattoos do you have? None. Since my skin already hurts to be touched, I can't imagine touching it with a needle.
5. Your favorite fictional animal? Opus!
6. One person that never fails to make you laugh? Stephen Colbert.
7. Do you consider yourself well organized? Yes and no. I'm completely anal about organising because I am so bad at it, if that makes sense.
8. Any Addictions? I really try to stay away from those things, since I have an addictive personality.
9. From what news source do you receive the bulk of your news? I subscribe to the newspaper because I need a physical paper to read, but I also get pointed to various news stories by the internets.
10. Would you rather go to a carnival or circus? Probably a carnival since circuses are kind of cruel.
11. When you were twelve years old, what did you want to be when you grew up? A Fly Girl. Ok, mostly a writer.
12. Best Movie You've Seen This Year? Kiss Kiss Bang Bang.
13.Favorite alcoholic drink? Enh, I don't drink anymore.
14. What is the first thing you do when you wake up in the morning?
15. Siblings? My father had two or three other children. My mother has three. They're all younger than me.
16. What is the best thing about your job? Well, I'm currently unemployed, so probably not having to go to it.
17. Have you ever gone to therapy? Yes, but the therapist wasn't very good.
18. If you could have one super power what would it be? The ability to reallocate resources from the richest 5% to...
19. Do you own any furniture from Ikea? Surprisingly, no.
20. Have you ever gone camping? Yes, and I mostly like it (assuming we're not sleeping directly on the ground like my parents always did), but sadly the last time we went, it was way too cold, windy, and rainy for me.
21. Gas prices! First thought?Why did they kill the electric car? I don't drive, but it does affect me. Other countries and Hawaii have to pay more already, though.
22. Your favorite cartoon character? CatDog. Ok, I just like the theme song.
23. What was your first car? Never had a car.
24. Do you think marriage is an outdated ritual? Yes and no. I think there's this whole cult based around the ceremony, etc., but less attention is given to the actual relationship.
25. The Cosby Show or the Simpsons? I loved the Cosby show growing up. The Simpsons were great, but I think they jumped the shark a couple of seasons ago.
26. Do you go to church? Not since high school (I went to Catholic school). I'm leaning more towards (small u) unitarianism at the moment.
27. What famous person would you like to have dinner with? Johnette Napolitano or Vincent D'Onofrio.
28. What errand/chore do you despise? Cleaning my own house. However, I was a housekeeper for many years and I have no trouble cleaning other people's houses. I don't get it, either.
29. First thought when the alarm went off this morning? I accidentally left my cell phone on vibrate, so I slept through it.
30. Last time you puked from drinking? 1994, and it was on purpose. Heyy, one of these questions is not like the others!
31. What is your heritage? German (5/8), French (1/4), and Norwegian (1/8).
32. Favorite flower? I think it's Arabian jasmine, but I haven't actually identified it yet.
33. Disney or Warner Bros? Warner Bros, by a hair.
34. What is your best childhood memory? Totally random: my (late) aunt Caroline, pregnant, sitting on the bathroom floor and playing "The Sweetest Thing" to practice for a gig.
35. Your favorite potato chip? Terra Pommes Frites? Ok, ok, Terra Red Bliss with Herbs. I've never really liked potato chips (sorry). Now, curry chips...
36. What is your favorite candy? Good'n'Plenty.
37. Do you burn or tan? I go from 0 to red in 15 minutes.
38. Astrological sign? Pisces, but I feel compelled to mention that my ascendant is Aquarius and I have three planets in Aries.
39. Do you own a gun? Nope.
40. What do you think of hot dogs? Never liked the meat ones and I haven't had one since 1990. I like the tofu ones with ketchup and sweet relish.
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