Travel fun

Well, I'm finally back after our annual trip to Tahoe for a conference. This year, we decided to take advantage of living in Seattle and drive, since we hate to fly and we need to take a lot of stuff with us. Driving did make things hugely better, but our car broke down in Yreka. So we lost the extra day we would have spent picking up supplies and getting things settled. I'm sure Tahoe is a wonderful place if you're not there for a conference. Every year, we go there and every year we don't have time to do anything else. Sometimes we even miss the small window in which stores and restaurants are open -- if you go, don't do that! It was nice to see people, albeit briefly, though.

Since I've travelled by car before, I knew I would probably need more insulin. Last year, I needed about 8% more. This year, I needed 40% more every day that we were in the car. I'm not joking! I was really conservative about it the first day and spent a good part of it over 200. Once I'd gotten up to 40% and stuck to it, everything was fine. I had read that a lot of people needed less insulin at high altitudes, so I went back to my normal insulin amount once we got to Tahoe. Actually, I needed 30% more on the first day (for other reasons) and 20% more after that. When we got back in the car to drive back, I went back to 40% and it worked out great. On the one hand, there were some really crappy days in there. On the other hand, I managed to figure it out and the last 3-4 days everything went really well. My housemate had about the same experience - he needed tons more insulin in the car and some more in Tahoe. He told me that 40% was ridiculous and couldn't be right, but I guess I think that until he keeps track of his own insulin intake and proves to me it's not 40% more, he can stfu. ;)

There was one day where everything seemed to go wrong: our first day in Tahoe. In the morning, I had settled on 20% and everything was going fine, but by afternoon I kept taking insulin and it seemed to have no effect. I was pretty sure my insulin wasn't bad and my set looked okay. I did have a low a couple hours before dinner, so I ate 28g of chips (low fat) and then bolused for most of it. When I sat down to eat dinner, I was at 171. Wait, what? I bolused for dinner even though we hadn't ordered yet - about 10 units. I checked again about 40 minutes later and I was at 220. I still hadn't eaten anything yet. I can assure you that I wouldn't see a rise from eating chips after more than two hours, so I was completely puzzled. We ate dinner and hurried back to the hotel because we were supposed to be somewhere. When I pulled my set, guess what happened? About 12 units of insulin came pouring out! This was only the third day for it, and normally I change after two because it's a needle set, but tunnelling never happened to me before. Once I'd changed it, everything was back to "normal."

The best part is that I have an endo appointment tomorrow! Heh. I wish all of you less "interesting" trips.

I can has cabinet

I can has cabinet
Originally uploaded by LilituC.

I finally got a cabinet to put all my diabetes supplies in, since I was tired of them being all over the house. I especially wasn't enjoying storing my sets on the floor. I absolutely love this cabinet! Here's what it looks like closed. I got it from this site.

Thoughts on service

So I called MM and explained what happened. They want me to return the sets (including a used one, ew) and they will send me new ones. Or rather, they sent me one box of new ones and envelopes and canisters to return the old ones. Once they receive those, they will send me the other three boxes. I can understand it, but it doesn't entirely alleviate my panic at only having half a box of sets. Anyway, I sent the old ones back but I don't know how long they'll take to arrive at MM.

Now MM has been dinged for their customer service (even by me). One problem that I see became clear after talking to the same person in sales and supplies more than a few times. It seems that the sales people are not trained on the products they're selling. I learned that this person had never seen a data cable and didn't really know how infusion sets worked. I am a lot more clear on how I was mistakenly sent IV-3000 instead of IV Prep - they're just words on a computer screen to someone who doesn't know what they are. If people call up and don't know the name of what they want, they have to talk to the Helpline.

Last time I had to order tubing (from the Sils), they tried to talk me out of it because I'd just ordered sets (Sure-Ts). When I finally convinced them that yes, I wanted to buy more sets because I only needed the tubing, they tried to get me to order the box with 5 sets of tubing and 10 cannulas for $100, instead of the box with 10 sets of tubing and 10 cannulas for $116. It took 5 minutes to get them to understand why this wouldn't work (during which they kept trying to get me to talk to the Helpline). I think the major issue is that we might as well be talking about floobles and gargs for all they know. I think it's a problem when people don't know what they're selling. I know they can't give out medical advice, but they should at least know what people are talking about when they say they want to buy something. If they solved that, they might solve a lot of the complaints.

Enh

I did end up getting sick. Then, I got better. Go, antibiotics! It took me awhile to feel a lot better, though, because my blood sugar has been higher overall. Now, I did gain 5 lbs since the beginning of the year(!), even though my caloric intake has trended down and my activity level has gone up. I'm starting to wonder if moving to Seattle made the difference - maybe the climate is having an effect on my metabolism. Anyway, since that happened more gradually, I don't think it's why I suddenly need more insulin. A more plausible explanation is that my insulin production has dropped again. It's not a huge change - from .35/hr to .40/hr. So far I've only changed my breakfast ratio to 1/12, but I need more data on whether the others need to be changed.

I've been having issues with my Sure-Ts lately. Basically, the failure rate has been pretty high - I'm getting concerned about how I will be able to pay for enough sets if this continues, since they aren't cheap. My insurance does cover them, but they won't cover the extra ones you have to throw out. I've having to change them 1-2 times a day, and that's with letting it go as long as possible. I got these Sure-Ts in my last order a couple weeks ago, and the needle isn't exactly at 90°. Maybe 105°? I can't figure out if they were always like that, although I don't think they were. I don't have any old ones left. The sets I have are two different lots, so I opened up the second lot and they were the same. Wait, I just remembered I had an old Sure-T in my purse. I checked and it looks like it's perfectly at 90°. The second problem is that the pliable wings are slightly off on one side. So I put in the set, but when I go to tape it flat, flattening the wings makes the needle move. Aargh! I hate having to return things to MM. Maybe I can just try to bend them back into position (carefully); that's what I did with the last one. Or, okay, maybe I will also try calling them tomorrow.

For Chrissie

precision xtra
Originally uploaded by LilituC.

So last night I was stuck in a rage bolus cycle, trying to get my bg to go down. It wasn't super high, but I just couldn't believe it wasn't going down at all despite all the insulin I kept taking. I checked my prime screen and discovered it had been two days since I changed my set (somehow it always sneaks up on me). So it was time to change anyway. It looked totally normal, too.

Then as I was leaving the bathroom I was stunned by a big wave of nausea. Wait, what? I didn't feel sick at all otherwise and I usually feel it right away. Still nauseated, I thought maybe it could be ketones, so I checked. I'm not sure why even small ketones make me so nauseated; I get the impression other people don't feel them until they're higher. I tested my bg and got 109.

I still have no idea what happened. I felt better after an hour or so and my bg is back to normal now. I didn't test for blood ketones again because I just can't afford it. I did wake up with a sore throat this morning, but I did every day this week. I had just figured it was normal. Except my housemate got diagnosed with strep throat this morning, so I foresee a trip to the clinic to get tested in my future.

Surprise Color

surprise color
Originally uploaded by LilituC.

It's subtle; I didn't notice until I put the pump on a white surface.* That skirt I got at the thrift store really *was* new - the color bled!

*White surface not featured here due to lack of light.

okee then

So in my neverending quest (I'm kidding) to have everything ever happen to me in the shortest time possible...tonight I got the dreaded NO DELIVERY alarm.

You see, we went out to the Melting Pot for my birthday and I had to bolus for the tons of food I ate with no nutritional information to guide me, and actually I did pretty well - only had to do one correction. Wait, what's that? Get to the point? Oh, right.

Awhile after we got home, we were going to eat my birthday cake. I had just changed my set, and I bolused for 50 g of carbs, but in the middle of it, NO DELIVERY. I looked at the set, pulled on the tubing a little to loosen it from the tegaderm. Well, okay, so the tegaderm was covering a bit more tubing than usual, but it was like an inch. Surely that couldn't make a difference? Then I tried to bolus the amount remaining. NO DELIVERY. I pulled off the tegaderm, but not the set. I think this was only possible because I had just put it on. Then, I tried again, and it worked. Except then I didn't know how much insulin I'd actually gotten. The pump said I'd gotten all of it, but who knew. So I slapped another tegaderm on there, bolused for 48 g and figured I could have a snack if I started dropping. Well, I never ate the snack. I *know* I got the last 1/3 of the first bolus, and the cake was probably around 38 g (I didn't know my husband put Splenda in it) so I totally should have started dropping, but I never did. I guess, as I read somewhere recently, the diabetes fairy must have visited me today.

ahahahahaha*ow*hahaha

So I was clicking around on Novo Nordisk's Changing Life With Diabetes website. I like to check out new tools and see what I think of them. I got to a screen where it was asking me to input my current status and then my goals. Question one: how many times do you check your blood glucose daily?

The form would only take a single digit.

no news is good news

Besides my endo, I also love my eye doctor. Amazingly, she's not an opthalmologist, but you know what? I insisted on seeing only doctors for years, and not one of them ever did anything for me. I'd tell them about my severe dry eyes, my headaches, my nausea, and they just gave me a bored face and said there was nothing they could do. Here's your prescription, now get out. Whereas my optometrist has been absolutely amazing! She said of course there were several treatments for dry eyes, she figured out why I was having headaches and nausea in less than 10 minutes, and at one point she said, "oh, I wrote my thesis on that!" Yes! Oh, and my endo thought it was perfectly alright for me to see her.

So after many appointments with her for the above, today I had my diabetic eye exam and my last appointment for the next year. I had a dilated eye exam four years ago (before I was diabetic), so I wasn't expecting anything. She didn't find anything diabetes-related, but she did say I have some thinning of the retina, which happens in really near-sighted people but diabetics need to keep more of an eye on it. She was really surprised that the thinning wasn't at least mentioned to me after the last exam. I was and I wasn't, if you know what I mean...

Holy wayback, Batman

Check out this video of an insulin pump from 1980.

Seven things

I've been tagged by Cass!

Seven Things to Do Before I Die
1. Finish learning Mandarin, German, Latin, Japanese
2. Learn how to program (I mean the real way)
3. Get a passport
4. Get out of the US
5. Go outside
6. Visit Israel
7. Pat a bunny

Seven Things I Cannot Do
1. Be spontaneous (which is actually my nature)
2. Be disorganized (also my nature!)
3. Just go somewhere I want to go
4. Run
5. Change environments too quickly
6. Stop worrying
7. Fix things

Seven Things I Find Attractive in Others
1. Kindness
2. Intelligence
3. Wit
4. Politics
5. Weirdness
6. Loyalty
7. Talent

Seven Things I've Been Known to Say
1. What the hell?
2. Are they on crack?
3. What in the crap?
4. Who's my little brattywatty? (to cat)
5. WHAT?! (to meter)
6. Why am I so tired?
7. Oh noes!

Seven Books I Love
1. Harry Potter series
2. Miles Vorkosigan series by Lois McMaster Bujold
3. Nero Wolfe series by Rex Stout
4. His Dark Materials series by Philip Pullman
5. Just a Geek by Wil Wheaton
6. The Silent Language by Edward T. Hall
7. Nightrunner series by Lynn Flewelling

Seven Movies I Recommend
1. Addams Family Values
2. Muppet Treasure Island
3. Office Space
4. Army of Darkness
5. Heathers
6. Hobgoblins (MST3K)
7. Harold and Maude

Maybe everyone's been tagged?

Great endo visit

Wow, I had a great time seeing my endo. I must admit that can't give her my highest recommendation because she's so busy she can't return phone calls until after 5pm the next day (or sometimes the next week if you call on a Thursday or Friday), but she's so fun! Yes, really.

I got my new data cables this morning and hastily uploaded my data and printed out a bunch of stuff. I didn't have much time to look at them, but I really like the reports on Carelink; they're good at showing the right data. The endo was so happy to see them; she said she loves data. Good thing, because I do, too. I was feeling bad because I hadn't done any logs, but I ended up not needing them. We didn't really talk about famous diabetes clinic, but at one point she said, "it looks like you do really well when the settings are right." Heh.

She completely understood why I don't have different basal rates or insulin sensitivities right now - everything is changing, so it's all I can do to just keep up with that. It's difficult to gather enough steady data. She said it looks like all my settings are good, but she agreed that I could lowering my ratio to 1/13! I'm amazed, because I think the reaction of 99% of people would be to look at the current numbers, say they're great, and that I'd have lows if I took more insulin. I'm pretty sure I won't, though; my body is just weird that way.

She'd ordered a cholesterol test, but I don't do fasting so well, and I just had it done in June, so I said no. I brought in the results (looks like they never sent it over, big surprise), and finally! Someone looked at my results and had the same reaction I did. She said it was excellent. Can you believe that I needed/wanted someone to congratulate me on my cholesterol test?

My A1c was 5.3%, up from 5.1% in November. I can probably only expect it to rise as my insulin production declines. I hesitate to even disclose the number and often don't on forums, since the tendency is to compare it to a regular Type 1 number. That, or to insist I must be having lows all the time, or in the middle of the night. I'm not having lows, I promise. It's really just the insulin production and the lack of overactive hepatic glucose production. Neither of those things lasts forever.

The endo said she wished I could come in and give a motivational talk to some of her other patients. I really do wish I could, but I get quickly overwhelmed by negative attitudes, and I'm just not good at turning them around. Also, it really is a lot of work, and many people just can't do it, or wouldn't have as much success even if they did do it. Still, it was great to get a lot of validation...from a doctor! I think some of you might be hearing me on this.

Oy vey

I am giggling like a madwoman. It's really not funny, really. Heh. Ok, I have an appointment with the endo on Tuesday Wednesday. I thought it was on Tuesday, but it's on Wednesday. I opened up my pump box last week to get out the data cable and download my data. Except, it wasn't in there. The software was, the meter was, but the cable was not. What? So, I called MM to have one overnighted to me. They said it was supposed to be in the box, so they sent it for free! I got it today. I was very surprised to see that it's just a USB cable with a test-strip-looking thing on the end of it. It looks flimsier than actual test strips, even. So I plugged everything in and started installing. Somewhere in the middle, I accidentally knocked the meter off the chair. The connector broke off inside the meter *and* at the base of the cable. So I had this cable about five minutes and broke it. I called MM again and got the same guy (he must think I'm a nut) and he said he'd send me two more, free overnight shipping. But it's the last time!

I shouldn't laugh, really, but come on!

What is LADA?

Sometimes I forget I'm diabetic. I wake up in the morning and go about my business, forgetting to test my blood sugar. It's not until I'm about to eat breakfast that I remember. That fasting reading is really important to me, though. I don't mean to forget; it just happens.

This is LADA. I've only been diabetic for two years. It hasn't pervaded every aspect of my existence yet. Most of my memories are not diabetic memories. When I dream, I usually don't have diabetic dreams. Is it easier or harder this way? I don't know. Does anyone really know? Does it matter?

So what is it like to have LADA? It has its good aspects and bad aspects. Sometimes, though, it's hard for me to tell them apart.

Good or bad?

- Growing up without diabetes, you had a "normal" childhood filled with overdosing on candies, pies, cakes, cookies, and high carb foods during every celebration. You expected to carry on these traditions as an adult. You have to reject or modify big aspects of your culture, which alienates your family.

- After a lifetime of spontaneity, you find out that you're going to have to think about everything you eat for the rest of your life. You can't just drop everything and go somewhere, or eat something, or just be in the moment. Low maintenance is valued, and high maintenance is maligned, but you no longer have a choice.

- Everyone knows you can't get "juvenile diabetes" as an adult and you're (generally) not in DKA, so you must have Type 2. Your family, your friends, your doctor, your diabetes educator, and even your endocrinologist will tell you this. LADA? What? That doesn't even exist.

- After trying to connect with other Type 2s and finding out that you have very little in common with them (no insulin resistance, no lifestyle to change), you try the Type 1s. Many of them don't want you, either.

- There is no book about LADA. Explanations of the effects of insulin on Type 1s and Type 2s do not apply to you, until you stop making insulin. Insulin formulas often do not apply to you. Information widely available for "honeymooning" Type 1s is for children. You will be told what does and does not affect your bg, but get different results. You will be told you shouldn't be testing your bg, shouldn't be on insulin, given inappropriate insulin doses, and fear ever being admitted to a hospital, because you could die. You will have to work hard to find any information that is even applicable.

- Since so little is known about LADA, it takes years for you to amass a wealth of information about it. Because this information is not collected anywhere and is barely touched on by existing resources, people will often inform you that you must be wrong about it. You will try to advise other LADAs, but with the majority of people giving advice from a Type 1 perspective, they won't know whom to believe.

- You're still making insulin, years after diagnosis. While this means that you probably won't have as many severe lows and you'll have a much easier time controlling your bg with a buffer of endogenous insulin, it also separates you from other Type 1s, and sometimes the chasm is just too deep to cross.

- You can do really well on a carb counting regimen or an insulin pump, but you will repeatedly be told that this is impossible. You should really just be on Type 2 drugs until your beta cells burn out completely.

- You will finally get approved for an insulin pump, and sent to a clinic for training, where they inform you that instead of 1/14, your new insulin ratio is 1/35. When you start to run high and feel awful, you are told that these are normal numbers and that you should stop complaining. You point out that the safeguards are in place to prevent lows, and you're not having ANY, but no one will listen. The formula can't be wrong; it's been tested on hundreds of Type 1s.

- When you finally break free of the clinic and start adjusting on your own, you find that after 2.5 weeks of running high, your insulin production has declined very rapidly. Coincidence? Who knows.

- Getting diabetes as an adult means that you will be told you're "not a real Type 1" and told you can't join someone's group because of it. You don't really "know what it's like." You can't. Your good friend is a Type 1; surely they can support you, right? No, your friend is strangely distant, mutters about how you "gave diabetes to yourself" and tells you that you should have exercised more. Once the confusion about LADA is finally cleared up, they still don't think of you as "a real diabetic."

- But getting diabetes as an adult also means that you're doing all your learning as an adult. You can become very informed about your diabetes right at the beginning. You have access to excellent modern treatments.

Yes, I know not everyone has the same experience, but this is mine. I know the people who think LADA is all sunshine and roses probably aren't reading this, but I guess I felt I needed to write it anyway. Not many people are telling my story, so maybe someone should, even if I'm not the best choice.

Huh?

Well, it seems there is no end to strange diabeted-related goings on I can have in only one month, heh. This morning I woke up and tested (81). Then I went to the bathroom (trust me, this is relevant), then started the coffee and went to check my email since it takes 30 minutes for the coffee to cool off enough to drink. After 30 minutes, I bolused for breakfast, then went to the bathroom again (huh? okay). But this time, something was different! My tubing was hanging free, neatly sliced in two. What? How could this happen? I literally have no idea. It was in my pants the whole time! (Hey, I heard that giggling). I stay far away from anything in the least bit sharp; I can't even have tags in my clothes. The cut was closer to the infusion set, so I can't even come up with some weird pump-cutting-tubing scenario and anyway, it was fine 30 minutes before! So it's completely inexplicable.

Anyway, my breakfast bolus ended up on me, so what did I do? Well, I rewound the pump, changed the tubing, and reconnected it to my infusion set. Then I did a fixed prime. I did that because I know missing a little insulin isn't going to have a huge effect on me, and I can always do a correction. Trying to (needlessly) insert an infusion set before breakfast and coffee, though? I don't think so.

surprise

There's a first time for everything. That's what they say. I've just reached another first: my first scary diabetes moment.

There I was sitting on the couch, long after dinner. I noticed I was trouble focusing on the captions as I watched tv (I always have the captions on). As time went on, I started to feel, well, high. But how could I be high? My blood sugar was perfectly fine after dinner. I'd just tested at 86 an hour before. I don't *ever* have random highs. Do I?

I checked. 215. What? I wouldn't ever expect anything over 95 at this hour. I even went without basal insulin all day the day before I started pumping, and I was perfectly fine. That was only a month ago! I washed my hands and tested again. 209. I stood up and walked to the office. As I walked, I could smell the high. My meter hadn't lost its mind. I got out my Precision Xtra to see if what I was smelling was ketones. I wasn't thinking very clearly, I admit.

Sidebar here: if you have a Precision Xtra and you've never learned how to use it, do it before you need to. You should have heard what came out of my mouth trying to figure it out. After 10 minutes I realised I didn't need to figure out how to put a lancet in (it was nowhere in the instructions) because I have my own lancing device. Finally I got the giant drop of blood in there. Countdown....then .1. What the hell does that mean? Ok, that's the lowest detectable. Hooray.

I decided to change out my site, but not the reservoir or tubing because I just put it in yesterday and I can't afford to throw away that much insulin (another story). Bad site! Bad! As soon as I took it out, I could see that things were not right. It's too soon for me to tell if it's infected, but I definitely hit a blood vessel (and somehow didn't feel this when it went in), and it sure was angry.

But the high is not supposed to happen to me. I've suspended my pump for hours at a time. I've had pretty consistent blood sugars every time I haven't recently eaten since forever. I'm taking a higher dose of basal than I supposedly need, to preserve my beta cells. I'm still making insulin, right? I know to some of you this isn't much of a high, but in the universe of my diabetes, this is firmly against all the known laws. This changes everything for me. Now DKA is a part of my universe, and all the laws just shifted.

Meme time

I saw this on Fading to Gray and it looked fun.

Put your mp3 player on shuffle, and the song that comes up is the answer to the question:

What does next year have in store for me?
Ednaswap - 74 Willow

What's my love life like?
Namoli Brennet - For These Hearts

What do I say when life gets hard?
Cyndi Lauper - Time After Time

What do I think of on waking up?
The Corrs - Dreams

What song will I dance to at my wedding? (Too late!)
Tara MacLean - Silence

What do I want as a career?
Sarah McLachlan - World On Fire (uh...)

Favorite place?
Ani DiFranco - Back Back Back

What do I think of my parents?
Nine Inch Nails - Head Like A Hole (heh)

What's my porn star name?
Michael Franti - Yes I Will

Where would I go on a first date?
Midnight Star - No Parking (On the Dance Floor)

Drug of choice?
Sisters of Mercy - This Corrosion

Describe myself
Metallica - One

What is the thing I like doing most?
Shakira - No Creo

What is my state of mind like at the moment?
Poe - Another World

How will I die?
The Bobs - The Golden Road

That was kinda scary!

win an insulin pump

Attention Canadians! A chance to win an insulin pump by signing into Myspace:

GET INTO THE SPIRIT Contest with Accu-Chek!

I think the format of this contest is unfortunate what with all the phishing going around, but that's a legitimate site.

Made In America

Today I finally watched the episode of Made in America where John Ratzenberger goes to the Smiths Cozmo plant. It was really interesting to see how the pumps were made; it's more clear to me now why they cost so much. I didn't agree with everything he said, but it is TV after all. We should be happy when people at least know the difference between Type 1 and Type 2. Of course *he* would, since his son is diabetic. So I would definitely recommend it.

John Ratzenberger will actually be in Seattle tomorrow (at the University Village QFC from 5 to 7) promoting his new book and the “Ducks For Kids With Diabetes” Campaign to raise money for the Pacific Northwest Research Institute. I just found out about this about an hour ago, so it's doubtful that I would be able to go. I think what he's doing is great, but the book itself doesn't sound like something I'd really be interested in.

I've seen the campaign at QFC before but I feel like I can't contribute to diabetes research...because I have to spend so much money on my own diabetes (and other things) that I don't really have much to spare. I definitely feel bad about it. I do give when I can.

It's just always something, though. Last night my glasses broke and we've only been marginally successful in gluing the pieces back together. I cannot see without them. When I went to make an eye appointment to get new ones, I found out that the ex-company screwed up our COBRA payments and we don't actually have the vision coverage we've been paying for. So we're probably looking at $400 out of pocket that may take up to two months to recover. It seems like something like this happens every time we get ahead. I'm not really worried; it's just that it would be nice to be able to save sometime.

Well, things are progressing somewhat steadily. I am feeling better most of the time now, so that's a relief. I'm down to 1/15 and I think it's right at least some of the time. With more testing, I will see if I'm going to need a different ratio for different times a day.

Not much is happening around here with the snow. We have four wheel drive so we're pretty much okay if we need to go out, luckily. My husband got switched to the night shift, so he's taking the car and doesn't have to bother with the bus wackiness right now. I was a bit worried about taking the bus to the Intro to Judaism class, but it got cancelled. I admit to being a bit disappointed about that, but obviously no one is going to make it there, so.

"I'm an adult and I'll do what I want."

This article hit me pretty hard. At first I didn't want to talk about it, I don't know.

Do we all know someone like this? I'm coming from a different perspective, though. I may a diabetic now, but I've been in a similar position to the woman in the article. The person I am thinking of had no qualms about putting their or my life at risk so that they could feel a little more like diabetes wasn't changing anything about life for them. Unfortunately, that's just not the reality of it.

The reality is trying to force juice down someone's throat when they're fighting you and saying they won't treat it, because they refuse to keep glucose gel (or glucagon for that matter) around. The reality is realizing you're out of test strips and you can't bum one because this person doesn't even know where their meter is and probably doesn't have any strips, even though they could get them for free. The reality is recognizing lows by the way the person is driving and never being able to convince them to eat some carbs (yours, no less) until you arrive at the destination. The reality is the constant ups and downs - both bg and mood. Everything has a readymade excuse: "I was high." "I was low." Sometimes it's not even true. The reality is carrying three times as much sugar as you could ever possibly need and seeing it all disappear into the other person's mouth in the space of ten minutes because they just can't get the hang of carrying their own, even after 20 years. The reality is the ugliness that comes out of this person's mouth automatically when you tell them you've just been diagnosed with diabetes: "I guess you should have exercised more" followed later by "you test too much" and "I have no sympathy for you whatsoever." The reality is knowing that all your concern, your planning, and your rearranging of things to make it easier to manage your own diabetes is often not only not appreciated, but explicitly resented. The reality is the cold sweat that breaks out over you when someone who *never* sleeps late does, but you know how angry they're going to be if you try to check on them.

You'd think that becoming diabetic would change my mind about the whole experience, and yet it hasn't. I want to understand how someone could have such a poor relationship with their diabetes that they feel compelled to treat people that care about them like that. I want to, but I don't. Maybe if I could, I could help. Or maybe, as I've often been told, I just need to let it go. But how do you stop caring?

new year

Well, I'm doing a little better. I finally had a low (63, not so bad) and I have to say it was actually a relief! It was a carb counting problem; we went to a new restaurant. My ratio is down to 1/16 and it seems pretty darn close.

It's been snowing here for two days. People seem a bit more prepared this time. It certainly is cold out there, though!

I wasn't sure I'd have resolutions this year. I think every year I say I'm not going to do it anymore! But here they are:

• Lose the rest of the 10 lbs I gained in three (3!) weeks of taking Actos last year
  


• Learn more about Judaism - I signed up for a class
  


• Completely overhaul the website I admin for the new year
  


• Visit my aunt and grandma - just have to find a way around that chainsmoking issue
  


• Visit a foreign country - might help if I got a passport first!
  


• Look for a job - already started, haven't found anything
  


• Send out the rest of my holiday cards! - gaah
  


• Finish the Mandarin series I was taking - found a place but can't get there yet
  

well what do you know

So I'm experiencing a new feeling right now. I'm simultaneously elated and shaking with rage. Why?

Well, the endo called me just now. I told her I'd had it with the clinic and that they were never going to let me have enough insulin. I'd explained all this to her previously, except I didn't know then about that last part. Well, this time she actually seemed to get it. She was shocked that they'd told me I couldn't have more bolus insulin and that I had to be at 50-50. I thought the world had gone mad there for awhile, so it was reassuring to hear her say that I was right. I mean, I was pretty sure I was right, but after the past ten days of being treated like I'm wrong, it's nice to hear the endo say it. She said we don't need to deal with the clinic anymore and that she's happy to make the adjustments I think I need. The first thing we did is lower my insulin/carb ratio to 1/18, although it looks like that's going to be pretty conservative. She agreed that my beta cells seem to be rebelling against the added load.

Why rage? Because I talked to her about all this last week, and told her how I was at my wit's end and I couldn't take anymore, and I even started crying. But she never said anything like this then; she just kept repeating that I had to stick it out with the clinic for a few weeks. It's just that...I feel like I've been through a war and the worst part is that it was completely unnecessary! I guess I just have a problem with inappropriate, rigid rules being forced on me. I always have.

So I hope things will be getting better soon, but it is going to be really hard for me to remember this whole time.

it wasn't great while it lasted

And so it goes. There's no point in thinking about what might have been when faced with the continual reality of what is. Here is what I know: 50% basal and 50% bolus does not work for me. I am still making insulin, just way more basal than bolus. I know this is backwards - believe me, I have certainly let my pancreas know all about it. But it goes blithely on, making an imbalance of insulin. I can only take 8-9 units of basal insulin, total. I know this number is too low. And yet my bg persisted in being low when I (unintentionally) exceeded it. I know that it's not normal for someone my size and weight, still making insulin, to have an insulin-to-carb ratio of 1/14. I know that, but all the knowing in the world doesn't make it not be. I know it's not normal (and some believe, not possible) to have crushing fatigue and illness with bg over 130. That doesn't make it stop happening.

Here are the facts:
- The clinic says everyone's TDD will reduce by 25% on the pump.
- My basal is running at 40% and they want it at 50%.
- My insulin-to-carb ratio is set to 1/25 but it's pretty clear that 1/20 or lower (carbs) is right.
- My highs after meals currently are 160-210. If you think those are great, consider that on injections they were 110-120.
- I haven't had a single low on the pump, but I almost never had lows on injections and no severe lows, so this is not a net win.
- I feel I should say it again: I am not having lows. How is it dangerous to change things when I am not having any lows?
- My endo is behind the clinic 110%.

Six months ago, I went on insulin, and it was like instantly losing 50 lbs. For the first time since I could remember, I actually had energy. I could wake up and get right of bed, most days. I didn't have to weigh continued pain with the continued health of my liver or developing a tolerance or having it hurt worse when the painkiller wore off. I could go out and see people and do things, without having to rest all the time or take frequent naps. I *had* gotten used to how things were, but after having the most amazing six months of my life, how can I give that up? I can barely get out of bed anymore. My quality of life is down to about zero.

At my last meeting with my CDE, she said she could not give me any more bolus insulin because my basal would be less than 40%. She seems to believe that I'm not getting enough insulin at meals. So she increased my basal after meals. Now, this approach might "work" for someone who's not making insulin, but my beta cells don't care; they will increase or decrease insulin production when the basal rate of supplemental insulin changes so that it comes out the same. So changing the basal rate (other than making it more than 8 units - injection-equivalent, or stopping it completely) does nothing. But let's take a minute to consider a system that is so rigid that she has to give me more basal insulin to try to cover meals because there is no other choice. I thought maybe since I have so much leeway, she could increase my basal as high as possible to give me more insulin at meals, but when I worked it out, even doing that would not allow as much bolus insulin as I need and not go over 60% bolus.

After this last change, she told me to email my numbers on Friday. I did, and emailed her Sunday and Monday. Then today I called, and found out she didn't work Friday, or Sunday, or Monday. I talked to another nurse, who told me that they never allow patients to adjust their own settings, and that it usually takes five weeks to get things set right. No patient adjustment. Five. Weeks. The CDE I've been dealing with never told me this, and hedged when I asked her, repeatedly.

And so, I think, this is where the clinic and I part ways. I am the first to admit that their formulas and approach work for 99.9% of everybody. I know that, but knowing it does not make it true for me, no matter how much they or I want it to be. I've heard all the arguments about how pump therapy is so great. I think it would definitely be for me if I was allowed the insulin I need, but I'm not, and I don't think I ever will be with this place. Maybe someday I can move somewhere where everyone doesn't go through this clinic, and then I'll be able to start the pump again and have an experience more like everyone else's.

And I guess it doesn't matter if people believe me anymore, or if they say, tl;dr (but have an opinion anyway). I think this is the last thing I'm going to say about all this since this whole experience is only relevant to the .1%, which so far is me.

Another 3 am, another set change.

T+

Well, I started on insulin. That's good, I suppose. I'm not happy about it, though. I had to change my set at the second training today, so I did, and it hurt. I figured it was just the insulin being on it, but then when I was leaving I saw blood in the tubing. I went into the bathroom there, and you can imagine what happened. I luckily didn't get any on me, but it's the most painful hematoma I've ever had. It happened two hours ago and it still hurts. What's strange is it didn't hurt like this before I took the set out.

So the CDE talked to my endo and it seems she confirmed that my TDD should reduce by 25% and it should be 40% basal at the least. So they put me on .2/hr basal, which I foresee no problems with. But they changed my carb ratio from 1/14 to 1/35. They changed my correction factor from 1/50 to 1/100. Also, I'm not supposed to correct if I'm under 200(!!!) and I can only do normal boluses. The CDE said I had two choices: do this for at least 24 hours (or maybe even three days), or take the pump off. That's it.

I am not unreasonable. I know that they are basing this on years of experience with different people, and formulas, and the CDE isn't allowed to change it. But what I know is that my diabetes doesn't act like everyone else's. I lost my phase one and phase two insulin responses early. I don't think putting the burden back on my pancreas is the answer, even if it works. If it does work, I expect that it won't work for very long. Sometimes my pancreas will "recover" for a day or a day and a half, but then after that things get worse than they were before. I also said when I tried to do this (run high) before that I couldn't do it again because the illness and fatigue were just too much. Well, it looks like I'm doing it again. I haven't eaten yet, so I know it's not a foregone conclusion, but I just can't comprehend my insulin sensitivity changing *that much.* The CDE said I could call the doctor on call if I was having problems, but who is going to understand in a short time period why 135 is completely unacceptable for me? How I need to correct even if I'm under 200? I am not looking forward to this at all. We have a friend visiting from out of town. We were planning to go to a movie tonight, but I have decided not to go. We were planning to go shopping tomorrow, but I may be too exhausted to go. I called the endo, but she hasn't called back yet. I feel like my freedom is just gone.

customer bad

Well, a little bad news. I ended up having to change the site at 4 am. It had hurt a lot going in, but the CDE thought that was normal. I think it was a warning sign. The IV3000 didn't stick for some reason, so had I slapped another one on over it. It ended up hurting too much to sleep on, so I changed it. I would have changed it earlier if I had more supplies on hand. I only have a couple IV 3000s that I got from the CDE. Anyway, it bled a little and was red, so I think it was just a bad spot. I didn't even feel the new site going in and it's fine now.

And now a word about customer service. I'd read all the scary stories about it and I thought people were just exaggerating. Well, I was wrong; they're true. At least, if they're talking about ordering. I called today and waited for 20 minutes to find out what happened to my supplies. The woman told me that they didn't send me a three month supply of sets because my insurance already paid for a three months supply of sets. Okay, that makes sense, but I didn't know since it was my first time ordering. Also, I explained to the person I ordered from why I was ordering them, and she knew they'd just billed my insurance for the other sets, but she never mentioned any potential problems and she knew I couldn't actually use the Sils, so it would be my only supply. Of course, she also said they'd go out that day and that didn't happen. Anyway, I explained the same thing to this woman and she just kept repeating that I couldn't order new sets. Finally, I asked if I could pay for them myself and she said I could. Well, why didn't she mention that? Another thing I don't understand is why I didn't get any IV 3000. I was going to ask why, but didn't get a chance. She told me I could order a three month supply of sets if I paid right now. My housemate was going to pay for it so I told her that and that I needed to talk to him about it. Then, she hung up on me. The other person did this, too! No, "thank you for calling" or "have a good day." Not even a click. So, I didn't get to ask her about the IV 3000.

I think I will try the online store now.

is it new year yet?

Well, I am still not 100% unsick (although just about 95% today), and now I'm getting these inexplicable headaches every night. Not cool! I haven't narrowed down the cause yet, but I hope I can soon. Other than that, I've been kind of excited.

I finally got my boxes of supplies! However, I opened the box that should have contained three months' supply of Sure-Ts and IV 3000, and it had...one box of Sure Ts and one box of IV Prep. I'm not sure how this happened, but I guess I will call MM tomorrow and get them to send out the rest. I did get four samples from MM, even though I was told I'd receive two and the packing list says two, so that will help for awhile. I was planning on changing them every two days, though. I get kind of nervous when I'm low on supplies, heh.

I did the first training today. Mainly it was a lot of "hmm, you've done this." The most surprising thing was that the CDE couldn't sign off on my settings because they are outside the settings they're allowed to set. According to their formula, my basal should be .25/hour and my correction factor should be 1 unit to 40 points. By my calculation (i.e. me-based equation instead of everybody-based equation), my basal should be .15/hour. My correction factor is 1 unit to 50 points. Oh, and my insulin ratio is wrong according to their formula, but she didn't say wrong in what way. But I know those last two things are definitely correct. She said they'd call my endo to get different settings approved before I start on insulin on Friday, but I'm not sure it will be all of them. I might have to have the higher basal, which wouldn't be horrible for me; I just don't need it. But it's probably obvious that the formula doesn't fit me because it's designed for people who make no insulin. Anyway, I will be doing the saline for two days.

Hope you all are having a wonderful holiday season!

blue Christmas

It was late, and I was thinking of retiring. The phone rang. Specifically my cell phone. Who would call me on Christmas Eve? Ah, my mother. My grandma has lately been in denial, so probably just gave her the number. I let it ring through to voicemail, expecting the usual rambling drunk dial. This year was different, heartbreaking. I heard my sweet 11-year-old sister's voice saying, "my mom...wants you to know.. that she loves you...and you should call her." In the pauses I heard my mother's voice, prompting her. I admit that I let this upset me. I was not fully prepared for quite that level of emotional blackmail. I was momentarily surprised that she would drag an innocent child into her own psychodrama, and it cut me.

I left my mother's house ten and a half years ago, at her behest. She told me to pack my bags and get out, because her obligation as a parent was now over. I was prepared (and already packed) because this sentiment had been made clear to me for a few years prior. I moved to another state with my boyfriend, established residency, and put myself through college in three years, while working full time. (I was only eligible for a tiny amount of financial aid because my mother and stepfather had recently started making a lot of money.) I got married and moved to Arizona (where J. moved in with us). We bought our first house there while I was finishing up graduate school. Over time, I was diagnosed with chronic illnesses that had been neglected over the many years my mother had refused to take me to a doctor. I finally got treatment and was much better for it.

While I don't feel sad about my mother's abandonment (I know that in the long run that not being around her helped me), I did feel bad about leaving my siblings behind. I don't think that I can do anything for them, though. While I grew up with so little, they grow up with anything they could want that can be bought with money. With divorced parents, they get twice as much. (I used to send them books, but I visited three years ago and the books weren't anywhere in either house.) My mother used to be mostly harmless, and I would talk to her when she called. Then, filled with contempt for those of us who have found our way, she started down a new path of hatred and addiction. The event that precipitated cutting off contact for me was a year and a half ago when I'd just been diagnosed with diabetes, had a raging infection, and was about to break out in hives due to a new penicillin allergy. She called, and I unthinkingly took the phone. When I told her what had happened, she explained that I wasn't sick, or diabetic, or asthmatic, or anything. In fact, I was making it all up. What I really needed was to stop taking all my medications and try meditation. That, and the many reports from my family about her behavior (and arrests) are why I don't take her calls anymore.

I know that I have found my own way, and that despite what some people think, the family of my birth does not define me. I and everyone else have given my mother copious chances and tried to help her. She's been to rehab at least five times now, but just refuses to do the work that would make any lasting change. I am very thankful for my friends, and my chosen family. Other members of my family are supportive, too, but right now they're far away.

The phone rang again last night, 30 minutes later, and 5 minutes after that. I couldn't turn my phone off. Luckily a friend sent me a silent ringtone, so I could stop the ringing.

holiday

Well, I'm finally feeling somewhat better. At least, no Dayquil today and I can still breathe. We had a nice Yule.

I still don't have my packages because the mailbox place decided to close early yesterday. I know it's a holiday and all, but they said they'd have extended hours for it, not less. I hope we can get it on Tuesday. I talked to the CDE finally, and she said that I can use their supplies, but they don't have the longer tubing. Oh, and they changed my second training to Friday! So I guess that's two days on saline?

I looked up my insurance information and the claim from MM is on there now. My insurance co paid it at 80%, which looks great for now. I know my coverage didn't magically convert to 80% from 50%, though, so I imagine they'll eventually discover their mistake, heh. It looks like maybe it got billed as the wrong code.


tree
Originally uploaded by LilituC.

curiouser

Well, I am still sick. Feeling a bit better, but not forgetting to take the cold medicine again! Oy. Anyway, I talked to MM and they said they will exchange the Sils for me and send out the Sure-Ts and the IV-3000. They said it would go out on Monday and I'd get it on Thursday. I got an email from UPS saying it would arrive on Friday. Still ok. Then today I got an email saying another package went out. What? So I called MM and they said only the new Sils went out on Monday and the one going out today is the rest, and I won't get it until after the 27th. Well, I explained the problem (I need them for the training), and they said they could overnight me two Sure-Ts. I don't know if that will be enough. The training instructions from MM say to bring three infusion sets to the training, plus there will be a one day saline trial, so I think the CDE will have me change it on the second day. I would feel better if I could get her on the phone, but I haven't been able to at all. I know they had a power outage over the weekend, but she did tell me to contact her on Friday. I guess I'm a low priority now, but I really want to get this training done already.

Sorry, but I'm not doing well at holiday mode right now. I think being sick has a lot to do with that.

Still working at it

I think I've passed the acute pouring-out-of-things stage of this cold and progressed to the sometimes-pouring-out-of-things and coughing-up-of-things. I know this since my husband and J. both have it and went through that already. So it may run 10-14 days for me as well!

I'm not sure about this ketone thing. The best book I have on it (Type 1 Diabetes by Ragnar Hanas) basically says to test blood ketones and gives advice based on those levels. Well, I went out to Walgreen's and got a Precision Xtra on sale for $10, but no one has the ($4! each!) blood ketone strips. I ordered some from the internet, but I won't get them very soon. The blood ketones tell you what's happening right now and only test for the kind that diabetics care about, whereas urine strips test for all ketones and show what happened 2-24+ hours ago. Not so helpful. So I get things like pink pink pink pinkish negative pinkish pink pinkish negative pink pink purple. I've been stuffing myself with liquids, food, and insulin, but it's not clear to me what's really going on. Today I didn't have any nausea and drank the most, but the ketones were highest. Huh? My bg has mostly been good, though.

I finally got my pump out of the box and watched the training video. It does indeed come in training mode, so you can pretend to use it. I set it all up, although I was startled when it started alarming after I set the date and time. I followed the video exactly, and they didn't show that happening, heh. Once I got it to stop, it was okay. Weird, though. I'm finding it's a lot of work on top of what I'm doing now to try telling it to do boluses when I take insulin. I think I have it down, though. I want to be excited, but I'm still kind of frustrated I can't use it. Oh, and it looks like the CDE ordered short tubing for me and I wanted long tubing (for the Sure-Ts), so I think I have to send back these four boxes of Sils?

Well, things are crazy all over Seattle. Many places are still without power and could be for several days. Luckily we're in a narrow strip that didn't have an outage.

So I've had a cold for the past couple days, and since my husband and J. both had it before that, I knew it was a bad one. I've been eating Dayquil and prescription cold medication, but it was still pretty bad. I didn't get sick for six months, pretty much the whole time I've been on insulin. I used to get sick all the time, so it was really nice not to for awhile.

I started running high yesterday - 30 points, but for me that's significant. Then today I couldn't hear out of my left ear, so I went to a clinic. They said I had some fluid in my ear but it wasn't clear yet if it was an infection. But since I'm a diabetic, they said I could have antibiotics anyway. I actually think it probably is an infection. It's the first time my blood sugar's run higher while being sick. On the way home from the clinic, I started feeling sicker and nauseated. Another first: positive ketones. Since it's never been positive before, I was really surprised by that. I'm not really worried about it. But I'll force myself to eat something and drink some fluids, I suppose.

DSCF1598

DSCF1598
Originally uploaded by LilituC.

Here's a picture of the Sure-T so you can see what I was talking about. Hope none of you are blinded!

Moving on

Well, today I saw the nutritionist and the CDE. The appointment with the nutritionist went well, as expected. She was really nice. Then I saw the CDE, who kind of had the wrong impression of me thanks to the other nurse, but I think we got it straightened out. She said she'd ordered the Sils for me but said MM is good about switching things out. I don't know about that. She wanted to try a Sil on me, but they didn't have any short ones, so she used a long one! I also asked for a Sure-T, which I guess is unusual. So now I have one of each. She put down the IV-3000 first.

Disclaimer: this probably won't apply to anyone else: the Sil hurt a lot going in and still hurt for awhile afterward, and it was a bit red for awhile afterwards. The Sure-T stung going in, but wasn't too bad after that. The Sil is still a little painful, and much more painful if I even brush the edge of the site or, say, touch it with my shirt. Definitely touching the site itself is right out. I'm not sure the shorter one would be much better. The Sure-T, on the other hand, I can't even feel. The only time it hurt after the insertion is when I caught the tubing in my hand when I was pulling up my shirt. I asked the CDE to tape it down, but she said it would hold fine, and it did. I don't think I'd put it on the same way, with the tubing connector going into a loop, though. She wants me to keep them on for a couple days. So far, I don't see any allergic reaction to the adhesive, but I may still be allergic to the Teflon in the Sils since I've reacted to heplocks before.

Oh! And my training is scheduled for the 27th and 28th. Not as soon as I wanted, but oh well. So far everyone else I've seen at the center has been great.

Hypoglycemia, my longtime companion

I have hypoglycemia. I know it's common for a diabetic to say that, but what I really mean is that I have the condition hypoglycemia - my symptoms definitely fall under that umbrella although I probably don't fit the diagnostic criteria, which I think is having bg <50 mg/dl regularly. I certainly have the data, though.

For many years, I would get cranky and irritable if I missed lunch or if dinner was delayed. The earliest specific incident I remember was in 2001, but I suspect it goes back much farther than that, until at least high school. When I started testing my blood sugar in March of 2005, my fastings ranged from 83-89 and my postprandial numbers from 110-185. Every afternoon, from about 5 pm to about 7:30 pm, my bg would drop to 65-75 and just stay there. I tried things like drinking some Propel or eating a snack, but it would just drop again. It's as if my pancreas just decided 70 is the number to be and was determined I stay there. During this period of time I would be extremely tired and would often get a headache. I was also at my crankiest. Low blood sugar at any other time of day doesn't result in crankiness, believe it or not. Partly it could also be the length of time I ran that low. (If I ever decide to get pregnant, I don't think I'll be able to run low like they recommend.) On a few days where I really exerted myself, I got lower numbers during that time period - 48 (my lowest bg TO DATE) 59, 60, 62. That 48 is when I apparently almost punched someone who was trying to help me. This is, of course, before I was on insulin or any medication for diabetes. None of my other medications cause hypoglycemia.

Fast forward to now. I still have that hypoglycemic period, and note that for four months I was only taking Novolog. It may seem like every diabetic's dream, but believe me, it isn't. I have to eat a meal. If I just try to treat the low, my pancreas stubbornly clings to its notion that 70 (or now with the Lantus, 60) is the place to be. I get aching headches and my irritability knows no bounds! Enough food will overcome it, but then I'm too full to eat dinner. Running high, although it might defeat my pancreas, is just not an option for me. So the result is that I am a diabetic on MDI (very MDI) and yet I still have to have dinner on time. I suspect that this will continue as long as I have good control up until I stop making insulin altogether and my pancreas has nothing to work with.

A maybe-related problem (or maybe it *is* the problem) is that my liver doesn't dump glucose in response to lows or stress. I think in a normal person this is supposed to happen, but not to the level it does in a diabetic. Mine doesn't seem to. So for example if I'd taken the Lantus at bedtime like it was prescribed, and it lasted 27 hours like it seems to, I would go low a couple hours after falling asleep and I'd stay low all night. This is also why I can't take Novolog and then fall asleep - if I end up low I'll just stay low all night and wake up with an awful headache. I *have* woken up a couple times below 60 - both times I felt awful and had a really hard time keeping anything down. So yeah, to be avoided.

I took four units of Lantus yesterday and four units today. Yesterday I did 1/20 for dinner and was fine. Today I did 1/20 for dinner and I'm high in a manner suggesting 1/14 was the way to go. So I think my plan is working, yay.

So I talked to MM today and they said my pump was ordered and will come on Thursday! I was really excited until I talked to Joslin about scheduling the training. They won't schedule me until after my appointments on Wednesday. With some pushing, they told me they'll scheduling training sometime in January, but they don't even have dates yet. I thought the training classes were more one-on-one and that they could be scheduled right away, but I guess I was wrong. When I said I was frustrated by this, the nurse was kind of unsympathetic because apparently things are just happening really fast for me. I guess it seems that way to them, but when I've been trying to get a pump for four months to cut down on three hours a day of diabetes management, it doesn't seem that way at all.

This just seems very frustrating, because I don't feel like I even need much training. They are going to show me how to use the sets on Wednesday. I've done the pump school online and I can quote from "Pumping Insulin" as needed. I was really looking forward to a holiday where I can actually eat what I want instead of avoiding most of it. I guess I will have to wait another year for that. I don't really feel excited about this anymore. Also I think I will start titrating the Lantus down tonight.

Mystery control theatre

Well, we have the internet now, but it's taken me a long time to get caught up on everything. We're still unpacking and arranging things. I'm starting to feel the pressure to get everything done now - cards, gifts, decorating. Wow, it's already the 10th!

I've encountered a new problem. I normally run low from 5-7pm (75-80), but lately I've been running even lower (65-70), and I've had to go to a 1/20 ratio for dinner or I end up battling lows all night . I seem to be "normal" (1/14) after 10 and I still have the spike around 11-11:30. My insulin sensitivity has never varied before - it's always been 1/14 all day unless I'm stuck in a car or an airplane, and then it's 1/12 all day. Friday night I accidentally took my Lantus at 6:30(pm) instead of 6:00 (forgot to set an alarm) and that night 1/14 worked fine for dinner.

So! My theory as to why this is happening is that the Lantus is lasting more than 24 hours. It's the only thing I can think of that makes sense, and it is possible. Of course I have been terrible about logging with my spreadsheet lately, but this started within two weeks of going on the Lantus. I would rather not tell the pump trainer about it, though, because (1) I think it will go away when I'm not on the Lantus and (2) I know myself best but others tend to misinterpret. I'm not nearly as complicated as a typical Type 1 as long as I'm still making insulin, so the "usual" explanations for these things don't yet apply to me. But I have the impression that people will go to those first because that's what they're familiar with. I really want to avoid spending weeks testing rates and having bad numbers when I don't need to. I already know what my basal patterns are. I have had trouble getting people to believe that I ran low between 5-7 without ANY insulin and did so since before I was diabetic. Unfortunately, I'm not sure if the trainer will listen to me or if I will have to smile and nod and then go home and adjust it myself. I am afraid they will look at my numbers (especially those hypos) and make judgments that aren't correct for me (but would of course be correct for someone else).

I know the other option is adjusting my Lantus down, which my last endo totally approved. It would probably be fine because I don't need as much Lantus as I'm taking, but since I'm so close to getting the pump, I'm not sure it's a good idea to go adjusting things right now. I think I'd rather stick it out until then.

You may have divined that I have a control problem. As in, being a control freak. It's true - I don't trust anyone else to make control decisions for me. Partly because so far they've always been incorrect decisions! My last endo was one of the best doctors I've ever seen, and while he offered guidance, he put me in charge of control decisions. This approach works well, and I've been able to make decisions to improve control that would require way too much time for a medical professional. I think it's significant that I haven't had any severe hypos - and yes, I'm still making insulin so it's a lot harder, but I could have them if for example I hadn't figured out to do a dual wave bolus before I even knew what one was. Sorry if I'm not explaining this right - I am not trying to brag or anything, just give enough information for people to see that I do know what I'm talking about.

Frankly, one of my biggest fears is having to be admitted to a hospital.

Maintaining internet silence

We're all moved into our new house, but still no internet. The cable company is supposed to come out this afternoon and set it up. Sometimes there is wireless but not very often and it drops out all the time.

I saw the new endo last week. She was great! She loved my spreadsheet so much she wanted a copy of it - luckily I brought the copy I was showing her for her. When I told her the GP wouldn't give me Lantus, she was horrified, even though she gets a lot of referrals from him. So I felt better about that. She said I was doing really well and she'd refer me to Joslin for the pump start.

I went to the initial assessment yesterday. Their facility is located at a different address than what's on everything! I found this out from them just hours before I had to leave on the bus, so I want to get that out there. Anyway, I met with a nurse there to talk about being ready for the pump. It was a bit awkward because she couldn't teach me anything, which kind of usurps her role. I couldn't avoid talking about my knowledge in that situation, though, because it was the whole point of the meeting. She did insist on examining my injection sites (ow!) and told me I could inject in all those places I see blood vessels (I didn't get into the ones you can't see with her) if I use a 45° angle. At first I tried to explain they are really close to the surface of my skin so that's not possible, but eventually I gave up and just nodded. I don't think I'll be putting *any* sets on the front any time soon. Especially after that nerve I hit last night. Wow, did that hurt!

I have an appointment next week to meet with the dietician to make sure I know how to count carbs, which is required. Then I meet with the pump trainer who is apparently going to stick me with all the sets and see if I'm allergic to them? I'm not clear on how that will work in the hour allotted, but okay. I know they usually send people to a 3-4 hour pump class, but I didn't hear anything about it this time. She thinks I can get my pump by the end of the year, though! Yay!

Snow in Seattle

Outside
Originally uploaded by LilituC.

Not pictured: Seattle drivers in snow.

Right to work be asked to leave for any reason

Well, my appointment with the new endo is finally nearing, on Wednesday. I have to psych myself up to giving my whole, long, complicated case history and have it make sense to the endo in the short time allotted. Then I have to assure her that my bg patterns are what I say they are, an even bigger challenge. Then I have to get her to approve the pump. All in the first visit. Here's hoping.

My bg seems to have evened out a bit. I'm seeing better numbers and I've even gone back to 1/14. So who knows. I'm still getting a spike of 30-40 points at night, though. It was 10 before the Lantus and now it's like 11:15. This is enough to put me outside my safe zone, so usually I wait for it and take half a unit of Novolog. On nights like tonight, though, it's more insidious. I was at 75 before it happened, so I ended up with a number below what I can correct since I can't give anything smaller than a half unit. Sometimes all is well by morning, and sometimes it isn't. Grr.

Today I worked out my healthcare costs, which I normally do every year in June. But this year a lot changed since then. So here it is: Medication (insurance copays): $210, Medication not covered by insurance: $220, Office visits: $30, COBRA: $824, Total: $1283

That's per month, guys. It will be even more if I get a pump. I'm feeling a little bummed out by this, and not because we can't afford it, because currently we can. However, that's more money than I've ever made by working and that is a hard thing for me to contemplate. I could probably make more than that if I worked full time, but I haven't been able to do that in a long time and it had a very detrimental effect on my health when I did. Now with the diabetes, it's even more complicated. The things I need to have in order to stay healthy and to be able to perform at work just aren't compatible with the way things actually are. I'm not disabled enough for Social Security, either, because theoretically I *can* work. The fact that the jobs I can do don't exist doesn't bother them any. My last job was one of those jobs: I did contracting from home for a major tech company. However, I have never seen another (legitimate) job like it for someone with my qualifications, and I did start searching again as soon as my contract was up. I *could* work an office job with flexibility in breaks and with a couple (very easy) accomodations. The problem is that when you say "accomodations," suddenly your IQ drops 50 points. Suddenly if someone gives you the wrong information and you act on it, it was your incompetence. Since suddenly people don't want to talk to you, this happens more often than before. Suddenly, finishing your work in 1/3 the time it took everyone previously is suspicious rather than lauded; there must be mistakes somewhere if only they could find them. And suddenly, they're finding any excuse to "let you go," which is exactly what happened in the three jobs I held prior to this last one. I know it's commonly believed that discrimination lawsuits are an easy thing to bring and win, but it's not true. Sorry.

Well, some bad news. MM talked to my insurance company and got several different stories, but finally they were able to determine that my coverage...sucks. Basically, they only cover Durable Medical Equipment at 50% and there's a $2k DME annual cap.

So this means that if I could get the pump this year I'd be paying $2800 and none of my supplies would be covered for the rest of the year. Then next year the supplies would be covered at 50% until I reached the cap. She said this sucky coverage was specific to the COBRA plan (previously DME was covered at 80%) and was chosen by the company. So the company *lied* to us when they told us we would be extending the same coverage that we already had. I'd be less annoyed if we weren't paying close to $900 per month for COBRA.

I said I was still willing to do it, so she sent me the documents and the payment plan information, which is *very* reasonable. I'm not sure yet if we'll need it since J. just got a great job offer. Of course, I still have to get samples from the rep so that I can find out if any of this is even doable. I think if it works it is worth the expense.

The next step is getting my new endo to sign the papers (they all said she was great) and getting referred to the Joslin clinic for training.

Two steps forward, one step back

Welp, I'm on day three of the Lantus. So far I'm not really clear on what it's doing. I haven't noticed my bg being that much different than without it, and to make matters more interesting, I've been struggling with stubbornly higher postprandials the whole time. I know part of it is that I'm conservative with corrections because I don't want to end up low. But I'd also kind of like to know why it's happening so that I can prevent it. Oh, and I'd like a pony.

So I told Diabetes Pilot (which calculates my insulin doses) to correct down to 100 and changed my ratio from 1/14 to 1/12. I learned earlier that while travelling all day (with no activity) I had to go to 1/12. It looks like now it might be here to stay. I'm not sure if taking Lantus (which tells my beta cells to make less insulin) is confusing my body, or if I just happened to get the Lantus at the right time and things were going downhill rapidly. These new settings are working a lot better, but I'd still like my fastings to be better, too. I have to give the Lantus a chance to work, though. I might be able to increase a little, but since I'm taking 5 units and my total basal need (according to John Walsh) is around 11 units, I don't have much room to make changes. I don't want to end up not being able to exercise, for example.

But! My husband got a job. He interviewed Thursday and they said they'd let him know Monday. They called Friday morning with the offer and he starts tomorrow! It's with a cancer research lab. J. also got one job offer so far, but is interviewing tomorrow with another company and hopes to hear back tomorrow also from a third company he interviewed with. It's a good offer, though. We also found a house! It is absolutely wonderful, lovingly cared for, and beautifully landscaped. There have been a few issues (the application process took a long time, they just found a leak under the house), but we still think it will all work out. We're moving in at the end of the month. And if that weren't all, someone just told me that Washington State has a new law (since we lived here before) about covering diabetes supplies. So my insurance company can't place all these restrictions on coverage for insulin pumps. I may still have to pay the deductible (she didn't but doesn't know why not), but it looks like there are a lot fewer hoops to jump through! I just got passed to a new MM pump rep and she said she'd have the people who deal with insurance look into it for me!

Meme time

The Procrastination Meme

Explain what ended your last relationship?
She went away for the summer and we both found someone else.

When was the last time you shaved?
I think 1993.

What were you doing this morning at 8 a.m.?
Turning off my alarm and starting the coffeemaker. Possibly testing my blood sugar.

What were you doing 15 minutes ago?
Reading the highly inaccurate CNN writeup of the student who got tasered.

Are you any good at math?
I am okay at math, but terrible at arithmetic.

Your prom night, what do you remember about it?
Standing in line for three hours to get pictures so I could prove I was there and not get grounded, followed by 15 minutes of dancing before it ended.

Do you have any famous ancestors?
Not that I know of. A small military airport in North Dakota is named after one of my relatives, though.

Have you had to take a loan out for school?
A loan? Ahahahahaha.

Last thing received in the mail?
Diabetes Mall catalog.

How many different beverages have you had today?
So far just coffee. It's early.

Do you ever leave messages on people’s answering machine?
Does anyone still have an answering machine?

Who did you lose your CONCERT virginity to?
Well, I attended an Elvis concert in the womb.

Do you draw your name in the sand when you go to the beach?
Nope.

What’s the most painful dental procedure you’ve had?
It's not the procedure that's painful, it's the whole time before the procedure.

What is out your back door?
I don't have a back door yet.

Any plans for Friday night?
Heh, it's only Saturday morning. Probably watch tv and pet the cats.

Do you like what the ocean does to your hair?
I've never put my hair in the ocean.

Have you ever received one of those big tins of 3 different popcorns?
Yes, once. I think I ate the whole thing in a day, ugh.

Have you ever been to a planetarium?
Yes, and I wasn't even stoned.

Do you re-use towels after you shower?
Yes, I don't have a vast collection of towels.

Some things you are excited about?
Getting Lantus, talking to the pump rep, my husband getting a job.

What is your favorite flavor of JELL-O?
Sugar-free watermelon.

Describe your keychain(s)?
I have a Mexican flag that was given to me by one of the friends that taught me Spanish, back in 94, and a thermometer I got at a store.

Where do you keep your change?
I don't carry cash, so I don't have any change.

When was the last time you spoke in front of a large group of people?
Probably in one of my classes, so back in April.

What kind of winter coat do you own?
I just got a long coat with a hood, but the hood buttons all came off. Doh.

What was the weather like on your graduation day?
Which one? Well, I guess it was bright and sunny at all of them.

Do you sleep with the door to your room open or closed?
Open or our Siamese cat gets very perturbed and wakes us up.

Super endo #1

So I saw my old endo on Monday, without the nurse, so I got 15 whole minutes! It was amazing. He is seriously the best. Once again he said he wished all his patients were like me. Ha, I wish all doctors were like him! He is one of the few people who really understands how hard I work at this.

He did give me the Lantus scrip (he asked first if I wanted that or Levemir). I'm supposed to start off at 5 units and he wrote on the report that I could adjust my own dose. He said, though, that he couldn't just say I'm a Type 1 because he had no proof (antibody test) so what he did instead is wrote in the report that he is treating it as LADA and that I am "in all probability an early subacute type 1 diabetic." That was good enough for me. He made it really, really clear.

He told me they just did a writeup of an Edmonton protocol study saying that people who retained some small islet function later on were diabetic again but no longer had dangerous hypoglycemia, i.e. some insulin production will prevent it. Which is why I need to take care of my beta cells by being on a long-acting insulin. Point taken. He said that he thought my numbers looked great for pregnancy (he always discusses pregnancy with young female diabetics), although I personally disagree. He said his only concern would be that psychologically it would be tough for me to handle. We've never even discussed that, but he's absolutely right. The constant insulin dose adjustment and running really low would drive me nuts. I'm definitely not ready for that. He did say that I would need to be on a pump and wrote it on the report, I think to emphasize that pumps are Good.

He said that I'm an excellent candidate for an insulin pump and he'd write the prescription right there on the spot, except my insurance won't pay for it until January. He wants me to keep him updated, and he said to let him know when I get my pump.

Tucson is hot

I am back in Tucson. My old endo has agreed to see me on Monday. So obviously I am freaking out about this endo visit. It's on Monday at 2. The problem is, I am 99% sure that he will argue with me about revising my diagnosis. I am about 75% certain that he will ultimately say no despite all my arguments. I think so because he made a conclusive statement on my lastreport that it wasn't Type 1, based entirely upon the unpositive antibody test. (They can't even accurately say that the test is negative). So, I need suggestions. I do have arguments, but I am a terrible arguer, so I can't guarantee that I won't screw them up. I'm also naturally unconvincing and it's a tough obstacle to overcome in general. Also, I will at most have 5 minutes of his time to cover everything in the entire visit (and I suspect we will be covering my decision to stop taking the metformin). I even have a book of articles by endocrinologists (that support me) but I seriously doubt he would even look at it - it would take too long. So, what should I do? Would it help if I made charts?

Characteristics of LADA	Yes	No
Positive GAD65 Antibody test		X
Thin and active	X
Quick progression to insulin dependence/ failure of oral meds	X
Intermittent beta cell function	X
Lack of or very low insulin resistance	X
Rapidly falling C-peptide	X
Normal blood pressure and triglycerides	X

Characteristics of Type 2 present

• No positive GAD65 antibody test

Possible negative consequences of being diagnosed as Type 2

That have already happened


• Nonspecialists see insulin treatment as unnecessary to maintaining health, especially due to small TDD


• Timely treatment and more frequent appointments are denied due to perceived lack of "seriousness" of Type 2


• Nonspecialist ignores C-peptide levels, history, and insulin dependence that indicate Type 1 (or at least similar treatment) simply because diagnosis is Type 2 - treating the diagnosis instead of the patient


• High bg of no concern to nonspecialist


• Specialist's office assigns low priority for scheduling of appointments due to Type 2 diagnosis


• Inappropriate medical advice given. i.e. "eat fewer carbs and exercise more" based on false assumption of high carb intake and infrequent exercise due to Type 2 diagnosis - a waste of both time, money, and opportunity for appropriate treatment
  
• Perceived as neurotic and therefore concerns are taken less seriously, due to actions such as frequent daily bg testing which is perceived as unnecessary and excessive for Type 2s


• Negative, sometimes openly hostile reactions from Type 2s in support-type situation due to having nothing in common with them


• Inability to gain access to Type 1 or LADA support resources despite their appropriateness

That have not yet happened but are possible


• Inability to obtain adequate insurance coverage of treatment due to Type 2 diagnosis


• "Sick day" assistance not available from primary care doctor


• Presentation at ER with moderate or high ketones results in bottom priority once Type 2 diagnosis is discovered in records, resulting in several hours' long wait before ketones even confirmed or treated


• Emergency treatment results in inappropriate action because "Type 2" diagnosis indicates overproduction of insulin and nonseriousness to most providers

D-Blog Day

Today is D-Blog day. I think I am supposed to talk about living with diabetes, but I don't really have anything to say about that. So here is a different post on something important: LADA (Latent Autoimmune Diabetes in Adults).

This information comes from research, but mainly from experience and reports from out "in the field."

LADA is autoimmune diabetes just like Type 1, but it is often misdiagnosed as Type 2. That's because it occurs in adults over 25 and because the onset can take 6-8 years. (While Type 1 can occur at any age, the onset is sudden).

How to tell the difference between LADA and Type 2:

- Positive antibody test -- while a negative antibody test is not conclusive, a positive result indicates Type 1 or LADA.

- Weight -- Type 2s on the thinner side are very uncommon except in certain genetically susceptible subgroups of Native Americans, Asians (South Asians, Japanese), Hispanics, Scandinavians, and African Americans. It would be extremely unusual for someone very thin or underweight, and/or in great athletic shape to develop Type 2.

- Family history. Someone with a long family history of diabetes is more likely to have Type 2, although it could be argued that many of these could be unrecognized cases of MODY.

- Weight loss -- Unexplained weight loss before or around diagnosis is associated with Type 1 or LADA, *not* Type 2.

- Ketones -- Moderate or high ketones are rare in cases of Type 2 and generally only occur in people who have had Type 2 for a very long period of time and no longer make insulin. Moderate or high ketones at diagnosis indicate Type 1 or LADA.

- Progression to insulin -- LADA results in insulin dependence much sooner than Type 2, even within a year of diagnosis. This is working from the outmoded belief that insulin should be prescribed when it's no longer avoidable, though.

- Response to oral medications -- LADA does not respond well, or for very long, to medications used to treat Type 2.

- C-peptide -- This level will decline rapidly as compared with Type 2. In some people in the very early stages of LADA, C-peptide may actually be elevated and seem to indicate Type 2. However, the ensuing quick decline in C-peptide is indicative of LADA.

- Insulin resistance -- LADA is not associated with insulin resistance, although see C-peptide.

- Triglycerides and blood pressure -- these are usually elevated with Type 2, but not usually with LADA.

- Hypoglycemia -- anecdotal evidence suggests a history of hypoglycemia prior to diagnosis might be associated with LADA.

- Inconsistent blood sugars -- The honeymoon phase in LADA can last several years. During this time, the beta cells often work or not work somewhat intermittently.

Why does it really matter if it's LADA or Type 2?

- Seriousness -- Sadly, Type 1 is treated more "seriously" and aggressively by doctors and insurance. It can be difficult to get adequate treatment or have insurance pay for it unless one is classed as a Type 1 rather than a Type 2 (insurance companies only believe in two types of diabetes). Insurance companies will often only cover insulin pumps for Type 1.

- Treatment -- LADAs should be treated like early Type 1s, not like Type 2s. Early treatment with insulin is believed to reduce the workload on the beta cells and preserve their function longer. This is important because retaining some insulin production for as long as possible reduces hypoglycemia and the risk of DKA. Also, background insulin can reduce the danger of the beta cells working intermittently.

- Danger -- LADA is subject to the same dangers as Type 1. A few people are diagnosed in DKA (usually as Type 1), but after treatment have a sort of "remission" due to the extended honeymoon period. Still, DKA can occur on rare occasions where insulin production suddenly stops.

So how can I tell if I have LADA instead of Type 2?

- positive antibody test (you can stop now) or low C-peptide?
- thin or active and in good shape?
- unexplained weight loss?
- no insulin resistance?
- have you had moderate or high ketones?
- high or variable blood sugar despite oral medications?
- quick progression to insulin?

Well, okay, then

S called this morning and said that the GP would not give me Lantus. He apparently thinks I don't need a basal insulin and that even half a unit of Lantus would cause dangerous hypoglycemia. I know he's wrong, but I can't convince him. He said to wait 3.5 weeks until I see the endo.

So, since I don't need a basal insulin, I decided today to stop acting like I did. I didn't eat every 2-3 hours so I could cover basal with Novolog, I didn't exercise after taking insulin and not eating. It's only 6 pm, kids, and I'm already so miserable that I don't know if I can stick this out for a week (presumably to try to prove it to the dr), much less the 3.5 weeks until I see the endo (to prove it to her). I can't express enough how I didn't want the chronic fatigue and constant illnesses to come back, and the fatigue definitely came back today. I don't have any energy; I don't even feel like reading because then I won't be asleep. I haven't felt this crappy in four months.

Just a few weeks ago

Today

My fasting is in range today because when I went to bed last night my bg was 66.

Onward and upward

I called the doctor's office first thing this morning, trying to allay my impatience. They were able to get me in today.

The doctor was pretty hesistant about putting me on Lantus. Understandably, since most people don't go on it right away and he is a GP. He said he wants to see my numbers first, so I spent four hours (it seemed like one!) making an Excel spreadsheet. I managed to drop it off at 5, but of course on the way over there I realised I hadn't broken out the number of extra units I'm taking per day to cover basal. Which is exactly the information he needs and hopes to get from the numbers. Oh, well. At this point I have to hope he can figure it out himself. It's actually only 2-3 units, but I definitely need more and more coverage. Part of why I had to make such a complicated spreadsheet is that I've gone to great lengths to keep my numbers down, so it's not completely obvious from the usual set of data that my basal is running higher. For example, around 10 pm I work out, take insulin, and don't eat anything. If I can get down to 70-80 that way, then I will wake up around 100. So not the way to do it, though.

My labs came back!
A1c: 5.1% (this one I believe. Too bad it didn't last, though.)
C-peptide: 1.0 (Range: 1.0 - 5.0)
Islet Cell Antibodies: undetectable
Anti-insulin Antibodies: undetectable

Bad news in that we still don't know what's killing off my beta cells so quickly. But good news in that my C-peptide is now low enough that my insurance company is supposed to pay for an insulin pump! Yay! Now all I need is the prescription. Making the insurance pay means I can't get one sooner than January, but I'm already kind of resigned to that. Heh, I think S, the medical assistant, was pretty taken aback when I cheered and got excited about having a low C-peptide!

Two and a half weeks, 132 injections

Another day

I've tried to stay away from documenting every day but it's difficult sometimes. Today I woke up at 103 (usually 83-89) and stayed above 100 all day, until 5:30 which is usually when my bg starts dropping. Even then I only dropped to 94; it's usually 65-75. Of course those sound like great numbers...for a diabetic. But considering it's a 10-20 point difference when things have been consistent for a long time, I'm a little concerned. I've had a basal spike around 10 pm for the past three days as well.

I'm a bit frustrated because I don't think Lantus can deal with this problem, but nothing else (short of a pump) would really work, either. What I need is to talk to a well-informed endo who can explain to me whether taking Lantus would result in lows or not (assuming I didn't exceed my total basal needs). I'm not sure an endo would even prescribe Lantus to me at this point, either. I don't know if I can do a pump yet - I have to test allergy and pain issues and find out if the endo will prescribe one. I could be having another massive beta cell failure and it's possible things will get bad before I can see the endo. But don't worry about me; I worry about every possibility because it's how I adapt to change. I just deal with everything that happens, when it happens. I'll deal with this, too.

Art or science?

Some days, despite the 6-8 shots I take, it's easy to forget I'm diabetic. It's easy because I feel better than I've felt in years (maybe even ever), because my blood sugar stays in the tight range where I don't have any symptoms, because managing my diabetes is more like a science than an art right now. Then, a day like today comes along. For various reasons lunch was delayed, so my blood sugar was in the lowish range when it was time to eat. That's just my body, not any lasting insulin effects. It had been that way at least 30 minutes, so I was getting a headache and feeling cranky. Then some distracting things happened, it being Halloween. I forgot to take my second lunch injection, 30 minutes after the first one. By the time I remembered, it was 20 minutes late. My bg had gone up 100 points in about 25 minutes. This hardly seems fair since I read that you can only lower bg at a maximum rate of 3 mg/dl a minute. It took three hours to get it back down to the "safe" range.

Since I'd had a big lunch I wasn't that hungry for dinner. We stopped and got bubble tea instead. I can't have it very often because it doesn't fit into my (personal) meal plan unless I skip a meal. It was delicious and I was sure I'd counted it correctly. My bg was within range for 3 hours, until I got a 45 point spike. This only happens with fatty meals, right? Right? I ignored it, because it was in the "ignore it" range - I figured it would go down enough with time. Two hours later and it's up another 20 points. I took a half unit correction even though I wasn't in correction range yet, because I'm afraid of what will happen if I go to bed with that number. Normally I wouldn't be, but things aren't acting like normal. I don't have an explanation for the spike other than most of the insulin wearing off. Which could mean that the profile for the carbs I ate was different than it's been. The other explanation would be a basal problem, which is too tricky for me to contemplate right now. Usually I can expect at least a 20 point drop if I start out in the "ignore it" range and wait a couple hours. But I can guess how this might sound to some of you.

The thing is, I'm just not ready. I put all this effort into management because I get consistent results. Today I spent several hours with my bg out of the "safe" range and as a result I'm completely wiped out. "Safe" range is safe from chronic fatigue. But for a couple weeks now, I've been getting unexpected basal numbers. Not diabetic range, but unexpected. I don't know if my pancreas is having a party lately (it has good days and bad days), or if this means my basals are finally going. I'm not ready for that. I so wanted to get on a pump before it happened, so I would have all the programming down. I don't know if Lantus would work - I definitely have daily patterns and I know what all of them are. Some have advised me that my pancreas would back off on insulin production if I took Lantus, so I wouldn't go low. Yet it's hard to believe that, though, when without intervention I have hypoglycemia every day - caused by my pancreas. My only real option would be to live with higher basal rates skewing things at certain times of day, and I can't handle the thought of being already near the top of the "safe" range just from basal problems. That means I'd have to overbolus for meals to fix it, and that is a dangerous game. I've never had a severe low and I've always put a significant amount of effort into avoiding any situations where I'd need assistance because I can't count on getting it.

I'm not ready for my diabetes to be an art and not a science. I'm especially not ready to go into the endo's office with artsy-type data instead of sciency-type data. I can tell her what my patterns are, but why would she believe it if there are now confounding factors? I need to have a strong case and every unexpected number weakens it more. If this wasn't enough to worry me, I'm waiting to get my labs back (and they hadn't yet ordered the ICA!) and I can't see the endo until the 29th. Now this entry is long and broody but I guess it explains the title of my blog.