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!