Friday, December 29, 2006


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.

Thursday, December 28, 2006

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.

Wednesday, December 27, 2006

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 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!

Monday, December 25, 2006

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.

Sunday, December 24, 2006


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.

Originally uploaded by LilituC.

Thursday, December 21, 2006


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.

Sunday, December 17, 2006

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?

Friday, December 15, 2006

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.

Wednesday, December 13, 2006


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.

Tuesday, December 12, 2006

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.

Monday, December 11, 2006

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.

Sunday, December 10, 2006

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.

Tuesday, December 05, 2006

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!

Monday, November 27, 2006

Snow in Seattle

Originally uploaded by LilituC.

Not pictured: Seattle drivers in snow.

Sunday, November 26, 2006

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.

Wednesday, November 22, 2006

Well, some bad news. MM talked to my insurance company and got several different stories, but finally they were able to determine that my 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.

Sunday, November 19, 2006

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!

Saturday, November 18, 2006

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?

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.

Wednesday, November 15, 2006

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.

Sunday, November 12, 2006

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 LADAYes
Positive GAD65 Antibody test

Thin and active

Quick progression to insulin dependence/ failure of oral meds

Intermittent beta cell function

Lack of or very low insulin resistance

Rapidly falling C-peptide

Normal blood pressure and triglycerides

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

Thursday, November 09, 2006

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?

Tuesday, November 07, 2006

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


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

Monday, November 06, 2006

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!

Saturday, November 04, 2006

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.

Wednesday, November 01, 2006

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.

Friday, October 27, 2006

The numbers game

I've been mulling it over for awhile, but now that I've got more experience with A1c numbers, I'm certain. The 5.1% A1c I had in May is wrong, wrong, wrong. Also, wrong.

How do I know? Well, back in March of last year, my fastings were very low normal and I had hypoglycemia every afternoon. My blood sugar was only elevated for two hours after eating and it was numbers like 140 or 160. My A1c at that time was 5.3%. My numbers steadily climbed and when I had another A1c done in January of this year, it was 5.8%. Then, my numbers went up even more, especially my fasting which went up by 10 points. My blood sugar stayed higher for much longer after meals. So, what was my A1c in May? 5.1%. So, you see, there's no way that can be correct. If anything, it should have been 6.1%. It was done at a different lab than the first two, but that's a really big variation. I'm not sure what happened at the lab of course, but if they mixed my sample up with someone else's they might suddenly find they're diagnosed diabetic!

I'm concerned because when a doctor sees that, they tend to assume the number is right (wrong), that I had great control on oral meds (wrong), that I shouldn't have gone on insulin (wrong). Unfortunately, I can't just stamp "wrong" right on the results. Hopefully I can convince the new endo, though.

Thursday, October 26, 2006

More plodding

Well, I got an appointment with the new endo: November 29th. Two days ago they said they were scheduling in mid-November. I guess I drew the short straw. After some reflection I called my GP's office and asked them to order all the labwork. Otherwise I'd just be wasting the endo's time and I'd have to come back (in 1-2 months, no doubt) to really get anywhere. They said okay and scheduled me for Monday. I will have to confirm on Monday that they ordered an A1c, C-peptide, Islet Cell Antibodies, and Anti-Insulin Antibodies, which is what I asked for. If it shows something useful, I can try to get the insurance to pay for a pump. That's starting to look better and better as time goes on and none of us has a job yet!

J. ran out of Lantus this week. He only found out after the pharmacy tried to reach his doctor in Tucson that she'd left the clinic. Because of that no one there would authorize a refill! And of course only R and NPH are available without a prescription. He was unable to track down the old doctor and he can't get in to see a new one until the 30th. I can't believe this, that they would deny insulin to a diabetic! He had a bottle of UL from a couple years ago (but not expired) and he's been taking that, but imagine if he hadn't or if he'd thrown it out when we moved. Aargh.

Thursday, October 19, 2006

Are we there yet?

I've been busy! Just kidding, not really. I found a new primary care doctor. He seems to be working out great, but it's hard to tell for sure with only one visit. I haven't heard back from the Diabetes Care Clinic, so I asked him to refer me to the endocrinologist he normally works with. I heard she went to Harvard and she's really nice.

I talked to a pump rep and ended up attending a Minimed class on Tuesday. It was listed as CGMS and one hour, but it was actually "Advanced Pump Skills" and it went 2.5 hours. I was amused that all the diabetics had to wait to eat dinner. I didn't really learn anything new in the class, though, and the length meant that I didn't have time to stick around afterwards and have my questions answered. For example, is clogging really something I would need to be concerned about, since I don't have a basal right now? I already asked people if I could program a pump to do what I do and the short answer is not really. I could try doing a dual wave bolus, but it might not have the same action profile, or I could do it manually but I would still have to remember when to bolus. I did the pump school online, but I haven't done the finetuning one yet.

I reviewed my insurance coverage again, and discovered that their policy actually says you must have a positive GAD65 test or a C-Peptide below 1.2 (range: 1.1-5.0). I think the chances of the former are pretty slim since I've had three negative ones. Clearly they don't care about the other two types of antibodies. I don't know how soon I'll reach the second one; my last one was 2.4 in June. Of course it should be lower now that I'm on insulin. I just don't know if I want to wait a year, though.

I finally met someone online who had a progression similar to mine! She had hypoglycemia originally (so did I), she then had really high postprandials but was diagnosed as Type 2 (me, too). Her C-Peptide was a bit high (mine, too). Then at some point (I should find out when), her fastings started going up and she lost that, too, pretty quickly. She went to a new endo when her fastings went up. She had another C-Peptide then and it was 2. The endo said she was definitely a Type 1 and put her on insulin. Two months later, she was on a pump. Her GAD65 was negative and she never had another C-Peptide since the endo thinks it's pointless. Scary how similar that sounds; too bad I can't see her endo. So, it looks more and more like I might have LADA. If so, I can expect that at one point, my control will deteriorate pretty quickly so that I need a basal insulin. Since I can already see patterns (like the afternoon hypoglycemia I still have even with no active insulin), I don't know how enthused I am about Lantus. I think I'd do better on the pump.

Saturday, October 14, 2006

And so it goes

I was somewhat stunned to discover that letting Calorie King's software count carbs for me is way more accurate than I was with my Calorie King book and my own judgment, but the numbers don't lie. I know that they can't account for variations in preparation, etc., but there you have it. Here's what I do to improve accuracy:

- choose the portion measurement that I can eyeball (like cups) (CK calculates nutrition information automatically for whatever amount you enter!)
- subtract fiber from carbs when eating high fiber meals
- enter the information in my database when it's not in CK and I have a food label
- choose a close equivalent if no information is available or enter each ingredient
- if the equivalent isn't accurate, enter the food manually with the right amount of carbs
- weigh foods when I'm at home or weigh out portions and put them in bags for later

I know that this is more work than most people are willing (or able) to do, though. I find that I really have to stick to it to maintain good control, though. I recently saw that Calorie King had diabetes software from the Palm, so I downloaded. It's basically like Diabetes Pilot except with a few broken things and fewer features. So: not recommended. It's too bad, too, because having the food diary talk to the diabetes software would have been wonderful...if it worked.

Other than that, I've just been plugging away. I sent off my self-referral packet to the Diabetes Care Center. They will review my case and call to tell me when and with whom I can get an appointment. I made a reservation to attend a Minimed seminar next week. We finally unpacked the scale and I discovered I'd gained 6 lbs! I'm back on my exercise regimen this week, though, so it had better all come off.

What's everyone else up to? It seems a bit quiet out in the blogosphere.

Friday, October 06, 2006

Being tired

Lately I've been feeling...not exactly burnout, but it's more like I'm just tired of all this management. We finally went out to about five different stores and bought a bunch of food yesterday today - exhausting in and of itself. Yet this will allow us to eat more meals at home and not have to eat out all the time. Since I'm a vegetarian, my low carb options are pretty limited, and then of course I love french fries. Still, I can only cover 49 grams of carbs initially (3.5 units), and if I eat more than that, I have to take another 1.5-2 units every 30-45 minutes. So, that means that a meal with 135 grams of carbs requires four injections to cover over the course of two and a half hours. I was handling that okay before we moved since it was very occasional, but with one or two meals a day like that, I guess I did start getting a little burned out. This is even with avoiding things like rice, pasta, and mashed potatoes. If I'm going to eat something, it has to really be worth the insulin.

I've also been feeling a bit isolated. This wasn't affected by moving, though. Whenever some other diabetic sees me somewhere testing my blood sugar or what have you, the first question they ask is "what type are you?" And I never know what to say to help them understand. There's no shorthand or helpful box for me. A friend suggested I join a diabetes support group so that I'd have someone to talk to, but the reality is that there aren't support groups geared toward people like me. I have more in common with Type 1s than Type 2s, but I don't think that they'd want me, either. And I just can't see myself sitting in a Type 2 support group saying I have no trouble avoiding sugar and I've been trying to gain weight most of my life - and I do think it would be totally justified if they felt uncomfortable. The other day, I joined a new forum and no one replied to my introduction post. It seems silly that something like that should bother me, but it somehow just underscored that I'm alone. It's kind of odd - my unusual medical conditions (dysautonomia, costochondritis, among others) never made me feel the way diabetes does. It was perfectly okay to be the only person in a 1000 mile radius with some condition and I never minded it. With diabetes, though, I just want to have something in common with someone else.

Sunday, October 01, 2006

Meme time

1. Do you still have tonsils? Yep.
2. Would you bungee jump? Oh, no. I think my nerves and joints have had enough stress for this lifetime.
3. If You Could Do Anything In The World For A Living What Would It Be? Write.
4. How many tattoos do you have? None. Since my skin already hurts to be touched, I can't imagine touching it with a needle.
5. Your favorite fictional animal? Opus!
6. One person that never fails to make you laugh? Stephen Colbert.
7. Do you consider yourself well organized? Yes and no. I'm completely anal about organising because I am so bad at it, if that makes sense.
8. Any Addictions? I really try to stay away from those things, since I have an addictive personality.
9. From what news source do you receive the bulk of your news? I subscribe to the newspaper because I need a physical paper to read, but I also get pointed to various news stories by the internets.
10. Would you rather go to a carnival or circus? Probably a carnival since circuses are kind of cruel.
11. When you were twelve years old, what did you want to be when you grew up? A Fly Girl. Ok, mostly a writer.
12. Best Movie You've Seen This Year? Kiss Kiss Bang Bang.
13.Favorite alcoholic drink? Enh, I don't drink anymore.
14. What is the first thing you do when you wake up in the morning?
15. Siblings? My father had two or three other children. My mother has three. They're all younger than me.
16. What is the best thing about your job? Well, I'm currently unemployed, so probably not having to go to it.
17. Have you ever gone to therapy? Yes, but the therapist wasn't very good.
18. If you could have one super power what would it be? The ability to reallocate resources from the richest 5% to...
19. Do you own any furniture from Ikea? Surprisingly, no.
20. Have you ever gone camping? Yes, and I mostly like it (assuming we're not sleeping directly on the ground like my parents always did), but sadly the last time we went, it was way too cold, windy, and rainy for me.
21. Gas prices! First thought?Why did they kill the electric car? I don't drive, but it does affect me. Other countries and Hawaii have to pay more already, though.
22. Your favorite cartoon character? CatDog. Ok, I just like the theme song.
23. What was your first car? Never had a car.
24. Do you think marriage is an outdated ritual? Yes and no. I think there's this whole cult based around the ceremony, etc., but less attention is given to the actual relationship.
25. The Cosby Show or the Simpsons? I loved the Cosby show growing up. The Simpsons were great, but I think they jumped the shark a couple of seasons ago.
26. Do you go to church? Not since high school (I went to Catholic school). I'm leaning more towards (small u) unitarianism at the moment.
27. What famous person would you like to have dinner with? Johnette Napolitano or Vincent D'Onofrio.
28. What errand/chore do you despise? Cleaning my own house. However, I was a housekeeper for many years and I have no trouble cleaning other people's houses. I don't get it, either.
29. First thought when the alarm went off this morning? I accidentally left my cell phone on vibrate, so I slept through it.
30. Last time you puked from drinking? 1994, and it was on purpose. Heyy, one of these questions is not like the others!
31. What is your heritage? German (5/8), French (1/4), and Norwegian (1/8).
32. Favorite flower? I think it's Arabian jasmine, but I haven't actually identified it yet.
33. Disney or Warner Bros? Warner Bros, by a hair.
34. What is your best childhood memory? Totally random: my (late) aunt Caroline, pregnant, sitting on the bathroom floor and playing "The Sweetest Thing" to practice for a gig.
35. Your favorite potato chip? Terra Pommes Frites? Ok, ok, Terra Red Bliss with Herbs. I've never really liked potato chips (sorry). Now, curry chips...
36. What is your favorite candy? Good'n'Plenty.
37. Do you burn or tan? I go from 0 to red in 15 minutes.
38. Astrological sign? Pisces, but I feel compelled to mention that my ascendant is Aquarius and I have three planets in Aries.
39. Do you own a gun? Nope.
40. What do you think of hot dogs? Never liked the meat ones and I haven't had one since 1990. I like the tofu ones with ketchup and sweet relish.

Tuesday, September 26, 2006

Design malfunction

I still haven't gotten my syringes from the new pharmacy. They ordered two kinds, but both turned out to be the wrong one. They've tried again to order the right kind and they think it will be in today. Why does this happen? It's definitely not their fault.

Why BD really needs to rethink how they package insulin syringes:

Here are the three kinds of (supposedly helpfully color-coded) syringes that my old pharmacy gave me when I started on insulin. I do not blame them one bit for being confused. The bottom one is the right kind of syringe.

The top and bottom bags are actually exactly the same color

This is the truly inexplicable part, though, and the one that gives the pharmacy the most trouble:

What?! This is (presumably) why the syringes I use aren't in the nationwide Walgreens computer. They're a newer model and I'm guessing the system wouldn't let them have anything duplicated when they tried to add them. This means that every time there's a question about the syringes at the pharmacy, I have to bring in a box to show them because they can't even pull up the right kind to order. This was even more...interesting when I was trying to get the first box!

I want to send this to BD with some, er, suggestions, but they don't have email and I don't have a color printer. So, it will take a little more doing.

Monday, September 25, 2006


It looks like my cat is not diabetic. I felt relief after the meter counted down and displayed 83. Of course I don't want my cat to be "sick," but I was also overwhelmed after reading about feline diabetes. Some people manage it a bit like I manage my own. I admit to not being able to picture finding more time in my day to do this. J.'s already qualified, too, but he subscribes to the less daily management school already. My husband is already very busy, and while he knows a lot, he doesn't have the "feel" for it. Obviously we'd do it if we had to, though. Let's just say that it was enough trying to get enough blood from him. I watched the videos and read the instructions that said how easy it was and that they do it once or twice daily. It wasn't easy, and it took almost an hour! Luckily it didn't seem to hurt him; he just didn't like the noise in his ear. I'm still puzzled as to why our kitty is drinking so much water every 15 minutes, though. It doesn't seem particularly dry in here, and we came from such a dry climate. It might be time for that vet once we find a place and can unpack our things.

I am reminded of the...precariousness of things after I tried to refill my syringes at the pharmacy last Thursday. Surely I can't be the only one who uses them! But even in Seattle, they have to be special-ordered. They're still not in and I'm in danger of running out now. I know I can reuse them, and I will if I have to, but I hate to do it. Injections are already painful for me (because of a nerve condition), so I'd rather not make it worse. Anyway, here's a diabetic moment from a couple weeks ago:

Last night we went to a restaurant that was far away from home and when we got out of the car, J. discovered that his insulin had fallen out of his bag earlier. Before we would have had to drive home and look for it. Instead he just used mine.*

At the restaurant there was this high school kid sitting by himself, just staring at us. This went on for about 30 minutes. I figured he must have seen the syringes or something. After he left, I saw a pile of empty Equal packets sitting on the table. Aha.

* this only works because I haven't reused syringes since before I opened this bottle since I can afford to buy them out of pocket now.

Sunday, September 24, 2006

The continued adventures

We're keeping the cats in a converted large dog carrier. We added a shelf covered in carpet in between the two halves. It's pretty roomy - in fact, they have almost more room than we do! Because we were travelling, we had to use a ball water bottle. At first they couldn't stand the indignity, but now they're still loudly using it. I guess changing the water in the bowl twice a day isn't enough for them.

This is how I woke up several times during the night hearing Kech drinking. Since we've been spending more time in the hotel room, I've seen him doing it a lot during the day, too. I asked my husband (who changes the box) if he'd been peeing a lot and he exclaimed, "someone has!" We had thought he started peeing on the floor just before we moved due to stress. This is how I came to be spending my Sunday morning researching how to test a blood sugar on a cat.

Saturday, September 23, 2006

Back to the city

We've been driving all over the city lately, trying to find places we used to love. Some are gone, but many are still here and haven't changed, thankfully. Seattle has so many different types of areas - some remind me of Chicago. some San Francisco, some Salt Lake City. I never noticed it before, so it's been fun to explore the city. Unfortunately, none of our explorations have resulted in finding a house yet. There is a place in the running, though, and we may go for it. I love the back yard (pretending I can't hear the freeway noise), the inside is large and bright (assuming you don't look at the carpet), and it's located off the street, which is very nice. To be fair, it sounds like they can be convinced to replace the carpet. The price is still a bit steep, but then we looked at the other options: not available until November (oops, did we forget to mention that); located right on a busy street; requires going up a steep hill and then down a steep hill; smells like a combination of mold and yak urine; landlord fails to understand the concept of paying cash. Paying a little more starts to sound a lot more appealing.

Sadly, since the printer had to be packed it's more difficult for me to work on things like getting an appointment with a new endo until we find a place to live. I have the place in mind; I just need to provide them with information. Not to mention that I will have to provide them with much more than they asked for, including helpful charts and graphs. If I just sent them them what they asked for (last three progress reports, last A1c), they'd either be left scratching their heads or I'd end up with an appointment in about a year. Since I'm thinking about pumping, that would be bad.

Another thing about living in a larger city is the price of test strips. In Tucson I could find the best price for OneTouch Ultra at Walmart (sorry!) until last month when the price went up everywhere. Then Walgreens (surprise!) had the best price. Here in Seattle I'm seeing prices about $14 more for the box of 100. So, I decided to take advantage of not living in a desert and ordered supplies online. We'll see how that goes.

I should mention that the reason any of this is possible is because we made a profit from selling our house. We are very lucky in that regard. Also that we were able to get Cobra coverage.

Thursday, September 21, 2006

Green again

Well, here we are in Seattle again. It's been a bit strange; in some cases I feel like I'm looking at it through an ultrafocused lens, and in some places it feels like we never left. Almost like Tucson was a dream. I don't really understand this feeling yet.

Throwing out the old bottle of Novolog and moving to a 1/12 ratio (from 1/14) for the rest of the trip seems to have fixed things for me. I'm back on 1/14 and putting all my carb counting skills to maximum use, since we're eating out a lot. I'm finally getting the hang of eating more than 49 grams of carbs - I can't take more than 3.5 units an hour unless I'm eating something really high GI. So, basically, I have to take 3.5 units before eating, then 1.5 - 2 units every 30-45 minutes until I get to the right total. This works out pretty well. I'd just been running into issues with (1) remembering to take the injections and (2) calculating the injections correctly. I'm pretty bad at doing arithmetic in my head. BTW I have to do this routine because otherwise (1) my bG ends up too low or (2) too high and it takes the rest of the day to get it down again, leaving me feeling utterly exhausted and bad.

I decided to test drive Calorie King's mobile software on my Palm TX before we went on the trip. It's a pretty good-sized database, although I have had to enter my own foods since I guess I eat a lot of unusual things. I will pay for it when the two weeks is up - it's $29.95 for the Palm version.  To solve the problem with calculating the insulin doses, I am trying out Diabetes Pilot. So far I am finding that their food database does not match my needs (about 95% of the things I've looked up are not in there) and it's too difficult for me to add everything like each bG reading in manually. If it could talk to my meter, that would be another story. I'm wavering between doing it so I can get the pretty graphs and just not having enough time. Still, it's already saved me from calculating the wrong dose twice, so I think I'm going to buy it as well. It's $39.99 for the desktop and $24.99 for the handheld software.

This study that says diabetes takes up to 1 hour a day away from kids made me laugh ruefully. 

Sunday, September 17, 2006

On the road

Well, time will tell if I'm having my first experience with a bad vial of insulin. I noticed yesterday that the floor of the car was a bit warm, but certainly not hot or anything like that. I've also been using the ice pack that comes with my bag, which is specifically for insulin. We can't seem to keep the cooler really cold, though - it may be broken, so the ice pack has gotten increasingly warmer.

Anyway, that brings me to my first experience with rage bolusing. I figured I could be getting unexpected highs because of sitting in car all day, but when it didn't respond to more insulin...I took some more. Luckily, I only went down to 70 and didn't have any serious lows. After this happened twice in a row, I took more insulin with meals, but was still unexpectedly high. So I'm throwing out the old vial and opening the new one. I hope this one doesn't go bad because I don't have any more. Hopefully the new vial will solve the problem!

Friday, September 15, 2006

On moving

Well, we're gearing up to leave Tucson and return to Seattle. I'm not sure if it's triumphantly, but given the circumstances under which we left, I suppose it is. I always figured we would return to Seattle, but I wasn't sure how. I had severe asthma, I had been cold all the time, and it was difficult to afford housing. Things have certainly changed. My asthma is now well-controlled, I found out that I have dysautonomia and have been treated for it, and we can afford to rent a house north of Seattle. So that leaves all the wonderful things about Seattle that we hated to leave.

I will miss Tucson, though. The beautiful sunsets, the smell of creosote, the torrential monsoon downpour where you can drive out through the other side, the perfect weather at 6 am, Mexican food. Sure, Seattle has Agua Verde, but it just isn't the same. I am not a desert person at heart, though. I've missed the green for four years. Let's not talk about what the heat does to my condition.

This is my first road trip on insulin. Our housemate, J., is a Type 1 and has come with us on many road trips, though. Still, I'm left with questions to answer. Where will I put the insulin? (Neither of us has a Frio). How am I supposed to dispose of syringes? J. actually called the garbage company here and asked them when he moved here, and they ordered him to just throw them in the trash with no sharps container! Strange, but true.

So, onward, to a new journey.


This is a first post

And so I jump into the blogging world a bit late. I had thought about doing this before, when I was going through the endless nightmare (well, to me, anyway) of trying nothing (thanks, Dr. A!) and all the "usual" treatments. It was just such a negative time, though. Not because of the diagnosis; I had no problem with that (stay with me), but becuase of the utter lack of treatment options for someone like me. Well, there weren't someones like me; that was the problem. I first asked for insulin in January, but I didn't get it until June. It has completely changed my life. I'm not tired all the time, like I was for years before diagnosis (hmm)! I can correct a high before it saps all the energy out of me! It's definitely complicated for me, but I am so willing to do it. I find it sad and wrong when people tell me (and they do tell me) that I shouldn't be on insulin.

So, more about me. My diabetes manifests itself in a strange way. If I don't eat anything, my blood sugar will stay the same for a long time but eventually drop. When I do eat, I'm much like a Type 1. I don't understand it and neither do my doctors. It sounds a bit like MODY, but not entirely. I could try to get the genetic testing and hope I have one of the six genes they know about. It wouldn't change my treatment, though. I already feel like I'm explaining too much, but there's not really a shorthand for "I'm a freak!" Just kidding. Um, hi? How about that Blogger Beta? *ducking*