What They Should Know

What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

I think I want to limit my comments to medical professionals. I would like to tell them to accept that maybe not everything you learned in school is accurate. That making a standard question like "do you have any highs or lows" for people with diabetes is nonsensical.  That when a person with Type 1 who came in to the ER for fluids explains to you when you're taking history that their A1c is artificially low (although still in a good range) due to hemoglobin issues, the correct response isn't to run an A1c without telling them, then come back and inform them dramatically,"you're not diabetic!" That it's never appropriate to tell everyone with diabetes that they will eventually get retinopathy simply because they have diabetes.

I would also like medical professionals to understand that diabetes is not a scientific equation where you put in certain inputs and get certain outputs. That if after a single random glucose on a blood test you demand to know, "why was your blood sugar high?" it's totally appropriate to get the answer "because I have diabetes." That 105 mg/dl is not "high." That having to eat carbs before exercising when you don't make insulin is normal. That denying a long-acting insulin prescription for a Type 1 without, say, consulting another doctor for advice because "you already have insulin" should be malpractice. I would like to see a world where medical professionals are not some of the least informed people about how diabetes works.

Of course, I know they're not all bad. I have definitely found some that understand what we go through. This is about what I want people to know.

Fantasy Diabetes Device

Sure-T (that better be Batman)
Originally uploaded by lilituc.

Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary.  Tell us what your Fantasy Diabetes Device would be?  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?

I am not a visionary. I believe I was once deemed "the least creative kid I ever saw" in school. It's even harder for me when there are no limits. So, I don't know what I would want if the sky was the limit. I am more of a down-to-earth person.

Some things I do want - more apps that work with my Blackberry (yes, I hear that snickering). I used to have Calorie King on my Palm and it was amazing. They haven't come up with anything useful in years, though, and their mobile site is unusable. I just wish for something with the functionality of that Palm app from 2004 for Calorie King. I assume there must be some monumental challenges given the lack of progress, but I wish someone would do it.

I would also like an insulin pump that's less yesterday's technology tomorrow (as we say at work). I feel like my insulin pump was already old when I got it, and hardly anything has changed in six years. I am kind of excited about the t-slim, and I hope to see it soon. I would like open access to my data, as Bernard always says.

The one aspect of diabetes that gets me down is the nuisance factor. I want tools that don't stop me from doing what I want to do and throw up roadblocks in my way - I want tools that actually help me and make things easier.

One Thing to Improve

Continuing on with Diabetes Blog Week, the topic for today is "One Thing to Improve."

I have to be honest: I don't know what to write about. I can't really think of a single thing to improve. I'm not saying that I'm perfect or anything, but there is really nothing with my diabetes management that I can point to and say that I need to improve it.

Maybe it's because I have so many other conditions that I need to manage. Most of the time, I tend not to think about diabetes much, even though it's always there in the background.That doesn't mean that I ignore it; I don't. I just don't consciously think about it, usually. I have so many other things going on.

Then there's the time factor. Right now I have zero free time, so even if there were something I wanted to improve, there wouldn't be time. I know everyone says that they don't have time, but I really mean it. I get home around 5 on weeknights, which gives me two hours to make and eat dinner, do a bare minimum of cleaning, make lunch, give the cat subcutaneous fluids, get my clothes ready for the next day, maybe answer a few emails that I needed a computer for, and get ready for bed.

So, to paraphrase Seinfeld, here's a big, long post about nothing.

One Great Thing

Continuing with Diabetes Blog Week, the topic today is One Great Thing. I would say that one thing I am great at is being prepared for almost any eventuality. Someone once told me that I put Boy Scouts to shame. I try to be prepared for any situation, mainly because for so much of my life I was stuck in situations that I did not want to be in with no means of alleviating them. I do not want to be there again. Sometimes it can cause conflicts. For example, I have a friend that firmly believes that if you prepare for a bad or unwanted situation, that somehow can make it happen. However, this same friend has relied on my preparedness countless times. I'm afraid that I have to reject their reality and substitute my own. I would like to say that I'm good at finding the humor in any situation. To quote Ani DiFranco, "I try to laugh at whatever life brings." It seems that my humor is not universal, though. I guess it leans more toward a dry, British type, which is not everyone's cup of tea. So, I didn't put that as the one great thing.

Find a Friend - Diabetes Blog Week

It's time for the Third Annual Diabetes Blog Week.
  
Today's topic is Find a Friend. I would like to feature a blogger whose blog I have been reading for several years.

I enjoy the posts of Adjoa Pearlsa at A Girl's Reflections.  She always has an interesting perspective on life and amazing photos to share.

Diabetes Baggage

This week, I've been cleaning out my closets. Some of the diabetes-related things I've come across date back to my diagnosis (March 2005). That whole period was terrible - being constantly sick and worn down, getting diagnosed with "typical Type 2," receiving inappropriate treatment (i.e. none), the things people said to me when they found out I'd been diagnosed with Type 2, the friends I lost, the nine months I spent trying to get treated, the last conversation I had with my mother. It all came rushing back to me. I realized I'm still frustrated and angered by it. Somehow, it still feels so unresolved to me.

Why am I holding on to these feelings when it is resolved? Whatever happened then, happened. It's over now. I need to let it go.

Holding pattern

I always meant to come back to this blog, but I guess I feel like I don't have much to say. I certainly don't have much to say about diabetes. I just do it and don't think about it much. What's really getting me down lately is having celiac disease. I thought about it, and I think a large part of what's bothering me is the abundance of treats at work. The treat area is on the other side of my cubicle wall (and can't be relocated). So, I spend most of my work day smelling doughnuts, cookies, bread, pastries, and cupcakes, whether I want to or not.

I never even liked most of these things and didn't eat them much before I got diagnosed with celiac. Still, there's something physically about smelling it that affects me. I know that this situation will eventually change in eight months to a year, but right now I am finding it a challenge.

Maybe it's weird, but it's not so much that my diabetes affects me as that diabetes affects me in concert with all the other things I have. The other things are always the tipping point where I start to get burned out. Right now I'm stuck circling the airport, hoping to land someday.

Second verse

I feel like I gave the Ping a good try, wearing it for almost a year. In the end, though, it just wasn't for me. Oh, I love the technology, the color, the precision. After switching to the Ping my average TDD dropped from 29U to 17U. It really did seem to make a difference.

The problem turned out to be the form factor. No, I'm not joking. The shape and size were bothering me. In fact, I didn't realize how much until I put my 522 back on. Then all the little things that had been bugging me became apparent. I thought I would love the Ping meter remote, but in practice I almost never used the remote function. I wasn't checking my bg as often, but I couldn't figure out why not. I never even used the carb database, since it worked differently from how I'd been told. Little things abounded - like after I tested I would immediately forget what the number had been.

When I switched back to my 522 and UltraSmart, the problems disappeared. I have no trouble remembering the number from the UltraSmart (and yes, I know that's weird). The 522 and its clip are flat on the back and much smaller than the Ping. The display goes the other way, which makes it easier because I like to wear my pump on one side.

With all this in mind and the fact that my MM warranty expired last year, I decided to upgrade to the Revel. It's been rocky (although nothing like the ordeal I went through with Animas), but I got my new Revel and hope to start on it soon.

CWF FFL 2011

It's time for my annual blog post! Er, that was a joke.

I had a great time at the Children With Diabetes Friends for Life 2011 Conference.

It was my first time going during a Disney year. In some ways, it was challenging - it can be tough to be a disabled person with diabetes. However, now I have a much better idea of what the challenges and can plan better.

It was great to see old friends and new - Kerri, Scott, George, Sara, Kim, and many others. It's great to see so many adults with Type 1.

One highlight was seeing Crystal Bowersox perform. I'd never heard her before, but wow, is she talented! What a treat! They never know who the VIP will be, so that was a nice surprise.

Hope to see everyone at CWD FFL12 next year!

LADA Awareness Week

It's LADA Awareness Week.

- What is LADA?

Note: This article mentions "double diabetes" which is different from LADA, not another name for it - I'm not sure where that particular misconception is coming from.

- Could you have LADA? (PDF)

- LADA Awareness Week on Diabetes Mine

Trial Time

Ping and 522
Originally uploaded by lilituc.

Anyone else feel like pump technology hasn't advanced all that much recently? I've had my 522 for about 3.5 years now, and the new "upgrade" seems to be features that other pumps already had before I got mine.

So I'm looking into other options. I feel like I know way too much about other pumps and why they wouldn't work for me. The Nipro Amigo is cute, but only has one infusion set available, and I'm allergic to it. The Accucheck Spirit comes with a PDA, which I love, but it doesn't talk to the pump; it just calculates your dose because there's no bolus calculator on the pump itself.

So I'm doing a trial of the Ping.

Long Time

I've been absent from the blogging world, mainly because I got a job last year. Pretty much all I do these days is work. We don't have personal-use internet where I work, so I've been away from anything I can't access from my phone.

Since I've been working again, diabetes has really shifted to the background. I haven't been testing as much as I want to, or looking at the data as much. I suppose it's my upcoming endo appointment, but I want to try to get back to that.

My pump warranty is up soon, so I will be looking at what's available now. I just found out about Colorware last week - am I the only one who wishes we could do that with our diabetes devices? Awesome.

Average Response

You can tell a lot about how much someone knows about diabetes by telling them your average bg - when they ask, not just for fun. My average for one week was 110. Anyway, here were the responses I got:

Optometrist: I guess that's okay.

Oral surgeon: Wow, really?

Endocrinologist: Wow! Unbelievable! How do you do it?

Internal medicine doctor: [No response because there was nothing about it for us to discuss]

Dental hygienist: Well, that's not *that* bad. You should really be careful, though.

FU Diabetes

FU Diabetes
Originally uploaded by lilituc.

My check-in slip for my endo appointment today made me laugh out loud and startle all the waiting people.

You all knew that stands for "follow up," right? ;)

Wait, what?

I like the Diabetes In Control newsletter (which is for doctors) and I like to take the quiz. However, the new one stumped me. Well, in that I didn't see any of the answers I wanted in the list. I did end up picking their "right" answer (after saying, "What? How is that? What?")

Anyone else know what I mean? ;)

carbowhat?

So I went to a Seder last night and my daily total was 176 grams of carbs. I went to another one tonight and my daily total was...394 grams of carbs. That's a new record! I should note that last night I ended up high because I forgot that grape juice has 40 g per cup so I did underbolus. Anyway, 394g? Wow.

17 boluses, but I don't know if that's a record because I don't look at that much. With a situation where you eat over a long time, I bolus each time I get food. I saw someone once who seemed to think that was wrong, but in the end I guess they can't argue with my results, even if I can't win them over with logic (why *wouldn't* you bolus each time you eat?).

Good thing I don't eat like this every day, though. Before tonight my average carbs per day was 154g.

PSA: Calibration

It seems more than a few people are under the impression that doing a control solution test calibrates your blood glucose meter, and that this needs to be done often to keep it working. I keep seeing control solution tests referred to as "calibration" and people being told to "calibrate" more often.

Well, doing a control solution test DOES NOT calibrate the meter. It doesn't actually do anything to the meter. It just tests the control solution, which tells you if the meter is operating within normal parameters. That's it. I think in three years, I've only ever done it three times. Twice it just told me what I already knew - my meter needed replacing.

The only way you as an end user can calibrate today's meters is by coding. So when you put in the code on the side of your test strip vial (if you're using a coded meter), then that is how you calibrate it.

I don't understand where this idea that control solution tests calibrate the meter comes from and how it got so widespread. Does anyone know?

Incorrection Part 2

Well, after an hour on the phone with MM (during which I was asked to read them the data three times), they are overnighting me a new pump.

I think I may actually have figured out where it was getting the numbers from (although I can't compare enough data points since the Bolus History only goes back so far). I really think it's just a minor software issue, but since it's a medical device, better to not take any chances, you know. I wasn't worried or anything.

So now I am eagerly awaiting a new pump. I hope it's as nice as the new old one.

Incorrection

So I love my new pump and all - the buttons are all stiff, it's all shiny and new-looking. Lately, though, I've been noticing a disturbing trend.

The other day I was looking at my daily totals when I came across something odd - it said that day my correction percentage was 12%, 2.7 units. Huh? I'm pretty sure I would remember that! I checked the bolus history and no, I did not correct that much, not even close.

Tonight, I reviewed today's total. I did quite a lot of exercise today so I didn't end up doing any corrections at all. The screen tells me that I had a total correction of 1.2 units, 8% of the daily total. No, no, I didn't.

I checked another day I didn't do any corrections and that one is correct. Out of the 16 days I've had this pump so far, four have incorrectly high correction totals (all at least 100% too high) and the rest are correct. I can't see anything different about those particular days, either.

It's so strange. I mean, how does this even happen? I can't figure out where it would even get those erroneous numbers from. I always use the bolus wizard, almost never change the recommended total, and, well, my old pump of two years never had this problem. It was always...correct. The only difference is that this one has updated firmware (and the only difference I've seen is a tiny one in how it handles selecting bolus type).

I guess I'll call the hotline tomorrow (and try not to sound like a crank), but, um, any ideas? I know I'm probably the only one who uses this information... ;)

Don't dream it's over

Uhoh
Originally uploaded by lilituc.

Today I was setting my pump down when the light hit it just right: so pretty and yet immediately I knew it was Wrong.

Yep, it's a hairline crack. Don't worry; a brand new refurbished pump should get here tomorrow morning.

All I know is it wasn't there two days ago, and I haven't dropped my pump. I have had it just over two years, though, and these things happen.

Goodbye, pump #1!