Scheherazade in Blue Jeans
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Judah update! + Calling all diabetics! 
22nd-Mar-2013 09:17 am
Hearth
We had a Babylon 5 marathon in the hospital yesterday, punctuated by the checking of blood sugar and occasional doctor visits. Judah's in good spirits - we're actually both really relieved to have a diagnosis! His weight loss and other stuff were scary.

He definitely has type 1 diabetes, and will require insulin. Which is where y'all come in: I know some of you use insulin pumps, and some of you do injections. I've been doing a lot of googling, but obviously I want to know what your personal experience has been like.

Also, to that end, any advice for a newly-diagnosed type 1 diabetic?

I'm off to the hospital again soon. We'll be seeing the diabetes counselor today, and they expect to release him today. I hope to still get to my Vericon panel this evening, but that's going to depend on how today goes down...
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22nd-Mar-2013 01:41 pm (UTC)
netdancer
For injections, length and gauge of needle has everything to do with comfort. When I can I use Monoject 31 gauge Short Needles, which are almost painless.

Glucometers are practically free. Sometimes they are totally free, and the companies make their money in selling you the meter strips, which are pretty expensive. I've used a large number of different meters, but my favorite have been the One Touch meters. I'm just looking for a glucometer that takes a straight up blood sugar reading and stores it in memory, I didn't really need the fancy meters that track all kinds of variables.
22nd-Mar-2013 01:57 pm (UTC)
jimhines
Okay, I'm gonna linkspam you here...

I've blogged about some of this stuff, and if you want a lot of reading, those posts are tagged at http://www.jimchines.com/tag/diabetes/

I talked a bit about my change to the insulin pump at http://www.jimchines.com/2009/12/diabetes-details-6/

Basically, the pump gives me a lot more flexibility, which I like. Changing my set often stings a bit more than the injections used to, but I only have to do it every 2-3 days.

netdancer is absolutely right about the meters being free. Most of the time my endocrinologist just hands me one of the many they've gotten from different companies. The test strips are where the money is. If you've got insurance, you'll want to check which brands are covered.

Other advice? Don't ignore it. Make sure you've got a source of quick-acting carbs with you, whether that's glucose tablets or, in my case, a big old stash of M&Ms in my file cabinet at work. I'd recommend a MedicAlert bracelet or necklace of some sort as well.

Also, do the regular doctor visits. Do the regular HBA1C tests, which measure your longer-term blood sugar averages. A lot of the people I know who've gotten into trouble with their diabetes simply weren't taking it seriously.

Oh, and diabetes is an obnoxious pain in the ass, and sometimes you'll do everything exactly right and your blood sugar will be 250 anyway. It's part of the disease's Puckish charm. Don't beat yourself up for the occasional high blood sugar. (But do keep testing, treat the highs, and don't let it become a routine thing.)

Have I babbled enough yet?

Edited at 2013-03-22 01:57 pm (UTC)
22nd-Mar-2013 01:59 pm (UTC)
shadesong
You could not possibly babble enough. :)

Edited at 2013-03-22 01:59 pm (UTC)
24th-Mar-2013 05:06 am (UTC)
mbarr
well, maybe after winning another Hugo. You were kinda on Cloud 9 after the first one. And you had a brute squad!
22nd-Mar-2013 02:02 pm (UTC)
hugh_mannity
Diabetes is something you have to manage for yourself, you can't leave it to your doctor. It requires daily attention. There's a learning curve -- both while you (the patient) get the hang of testing and discover what you can and can't eat and when the best times for meals are; and while your body adapts to the treatment. There's also a mental and emotional adjustment period. It's not uncommon for new diabetics to get depressed as it seems like your whole life has been taken over by this damned disease.

It requires preparation: Meals at regular times, snacks for emergencies. You can't just run out of food and say "meh, I'll go grocery shopping tomorrow."

It requires testing. Which bites. With insurance, you don't necessarily get to choose your glucometer -- you get what the insurance covers. Test often. Keep records -- both BG numbers and what was eaten. Especially at the beginning as you want to get to the point where you know that certain meals require X amount of insulin, and can plan accordingly.

Then there's diet. Most of what the diabetic dieticians tell you to eat is crap. Even if you're on insulin, eating a low carb diet will give you better blood glucose control than just drugs and insulin alone. You're already doing gluten-free, and that will help. Aim for 50g carb/day. Work down to it if necessary. Use one of the online tools to record what you eat (I like PaleoTrack, personally)

Finally, Exercise. Even if it's just a gentle stroll round the block in the evening, exercise is incredibly beneficial.

Ideally, you want to aim for a low and stable blood glucose. Spikes, up or down, are unpleasant and dangerous. Also, long (or even medium) term high blood glucose is what causes most of the complications of diabetes. Your average blood glucose should be < 140mg/dL to avoid kidney, nerve, and eye damage.

A couple of useful sites:
http://www.bloodsugar101.com/ -- lots of good practical advice

http://www.diabetes-warrior.net/ -- Steve rants a fair bit, but he's done miraculous things in putting his diabetes into remission. His advice has helped me tremendously.

http://www.marksdailyapple.com/diabetes/#axzz2OHF2HT9K -- This is mainly about type 2 but the information on how glucose and insulin metabolism work (or don't) applies universally.



22nd-Mar-2013 02:25 pm (UTC)
weegoddess
I'm just catching up now, in reverse-chron order (natch). I guess I'll read more if you'd posted earlier, but oh goodness this whole episode must have been stressful.

I'm not diabetic but in my past I had 6 years' experience in being the partner of one who was. Please do ask or vent when you need to.
22nd-Mar-2013 03:20 pm (UTC)
pisicutsa
I second the "you can do everything right and it still goes wrong so don't blame yourself" advice.

I've been playing around with my own sugar for the past week because for some reason my body has decided that it is going to give me blood sugars of 400 when I eat and do THE EXACT SAME THING that gave me 130 two weeks ago. (I finally figured out one change which I'm told "should not affect it" but, haha, tell that to my body).

But honestly, knowing what is up and having tools is SO MUCH BETTER than just feeling shitty and thinking you are a stress-puppy!
22nd-Mar-2013 05:25 pm (UTC)
gentleeleos
Type 1 for 31 years now. Hi. I love saying to doctors that I have been diabetic longer than they've been a doctor. Or, reminding them that, when I was diagnosed, they didn't have blood testing, they had urine testing (much less accurate and, well, grosser), there was no such thing as an HBA1C test or an insulin pump, and insulin was harvested from pigs and cows instead of made from recombinant DNA like it is now. Things are SOOOO much better now, and diabetes is so much easier to manage.

Okay...pump vs. injections. I have always done injections (like wolflady26, I do one injection a day of long-acting insulin, and then smaller doses of short-acting insulin each time I eat). I know people who have pumps and love them. I do not think a pump is good for me for a lot of reasons that have nothing to do with Judah, so I won't get into them here. But, the bottom line on it is this: as long as you are controlling your bloodsugar well with injections, there is no need for a pump. There is no "better" or "worse" except on an individual-patient basis. So, the doctors will likely start Judah off with regular injections, but if he finds that it's hard to control his bloodsugar or thinks that the pump would be more convenient, then he can switch. No need to actually make a decision on that now....nothing is set in stone (I have a friend who does injections regularly, but goes on the pump when she gets pregnant -- she's on her third pregnancy now -- because when she's pregnant, she has a harder time controlling bloodsugar...so people even swtich back and forth).

That said...the very best advice I can give a newbie is this: You are not a Diabetic. You are a person with diabetes. Diabetes is a back-burner issue-- you need to take care of it so that it doesn't boil over, but it shouldn't be your whole life. It should be the thing you take care of so you can live the rest of your life. That advice has served me well. I have lived with type 1 diabetes for the great majority of my life, kept it under control, and, so far, I have had no complications at all from it.
22nd-Mar-2013 08:32 pm (UTC)
bikergeek
Obviously, I am not a medical doctor and this is not medical advice. In fact, what I have found works for me (A1C=5.5, go me) is exactly counter to what a doctor will tell you is good for you.

I'm Type 2, managed with diet and oral medication, so I don't know how relevant my experience is going to be, but there's lots of good advice earlier in the thread.

Biggest thing I did was cut down on "white carbs"--sugars, white rice, and potatoes. Avoid high fructose corn syrup if at all possible. (Read labels; it hides in damnneareverything.)

Don't worry too much about fat content. One thing about fat is that it helps you feel full; this is why the "high carb, low fat" weight loss diet that's been medical dogma for 40 years now has such a poor compliance rate. Besides, as a diabetic, "high carb, low fat" is exactly the wrong thing to eat. What you're interested in avoiding as a first approximation is *carbs* rather than *fat*.
23rd-Mar-2013 07:47 pm (UTC)
akiko
Type 1 is somewhat different than type 2 in that "avoid/limit carbs" isn't (or wasn't, when my training was current) the advice given. Obviously you don't want to go hog-wild with the carbs, but for someone with type 1, the response to "ok, I want cake for dessert" is to calculate how many grams of carbs that piece of cake has (to a reasonable approximation) and then calculate how much insulin they need to cover that amount of carbs. (Whereas type 2 folks get to eat 6-10 15-g servings of carbs a day, depending on their body type, etc, and they may have to plan "hmm, do I have this roll with dinner or that cake for dessert?".)

Granted, every body's response to a carb load is different, and bodies may process different types of carbs differently. Which is a process and involves trial and error. And it may eventually turn out that the white carbs spike his sugar in a way that makes dosing insulin properly hard. But it also may not.

Yay, bodies! They're so useful.

ETA: Or what spinrabbit says a few threads down.

Edited at 2013-03-23 07:50 pm (UTC)
22nd-Mar-2013 09:21 pm (UTC)
spinrabbit
Rachel K-G here, weegee suggested I chime in here. I have two type 1's in my house -- Bear was diagnosed 40+ years ago, when he was in elementary school, and Snert is almost 12 now and was diagnosed at 4. (I had gestational diabetes for a few months 12 years ago, for what that's worth.)

Both of them are on insulin pumps now; although their pumps are compatible with the continuous glucose sensors, they don't use that feature.

Whether you're sticking yourself and how often seems to people who haven't been doing the diabetes thing long like a major issue, but after a while that fades into the background of these decisions. Insulin injections with fine-gauge needles don't generally hurt once you get past being hesitant to stab yourself. Infusion set insertions do, a little, but you don't have to do as many. Fingerstick blood glucose tests do, a little, but there's no way around them (even people who use continuous glucose monitoring have to do fingersticks too).

Snert's blood glucose control on multiple daily injections was OK, but we wanted some more flexibility on when and how much she ate -- it's hard with a little kid when their longer-acting insulin is peaking at a certain time so they *have* to have a snack then or their blood sugar will crash, and at another time they can't have a snack unless you're going to pull out the insulin and try to measure 2/10s of a unit. (She ate a lot of pickles when she was on MDI, b/c they're "free" and she liked them.) Our decision was also influenced by something that wouldn't be so relevant to Judah -- with a pump, what you ask day-to-day caregivers to do is different and less intimate. You don't usually expect a babysitter to do a set change, and keying in a bolus into the pump is less hands-on than giving an injection.

Bear stuck to injections for quite a while after Snert went on the pump. He was concerned about the inconvenience of being connected to a device 24/7 and didn't want to devote more time, attention, and testing to his diabetes care than he had been. But he was having more, and more serious, low blood sugar incidents. Switching to a pump improved his blood sugar control a lot, and wearing it has proved to be generally a minor inconvenience.

Bear tried out the minimed continuous glucose monitoring a while back, and wasn't pleased with it. The sensor was painful to insert, and sometimes continued to hurt after insertion; it had a long calibration period after being attached during which it gave no data; and it frequently gave false alerts where it warned of low or high blood glucose when a fingerstick showed that it was in range. This was a version or two back, some of this may well have improved, and I know there are some people who find the continuous glucose monitoring systems very useful.
22nd-Mar-2013 10:29 pm (UTC)
tenacious_snail
I'm Type2, so not sure i can be helpful, but I will say that diet is important.

Learning what works for me to eat out is helpful. Buffets are wonderful-- Indian buffets are common, and I eat them sans rice. Chinese food lunches-- order the dinner plate that comes without rice. As if I can have carrot sticks instead of pita bread to go with the hummus. There are lots of carb-lowering or carb-avoiding tricks that one can try.

22nd-Mar-2013 10:40 pm (UTC)
spinrabbit
Dietary issues:

How type 1 and type 2 are affected by dietary composition is quite different. A low-carb diet can actually decrease insulin resistance in type 2, giving potentially really dramatic benefits. The underlying mechanisms of type 1 aren't affected that way. It can be harder to match up insulin to the sharper blood sugar spikes that quick-acting high-carb foods make so going low-carb can be helpful in that way. And type 1s can develop insulin resistance as well, so insofar as going low carb protects against *developing* insulin resistance, that's good too.

For type 1, what's more central than the particular decisions you make about the composition of your diet is tracking the information. Those Oreos snert had for a snack? Not the *most* awesome nutritional choice, but if she checked the carb count on them, entered a bolus into her pump to get the insulin to cover those carbs, and checks her blood sugar in a little while to see if everything's going as she expects, then they fit into her diabetes management just fine.
22nd-Mar-2013 11:11 pm (UTC) - Something reassuring, maybe
wolflady26
Here's something that took me some years to really grasp.

Low blood sugar and high blood sugar can both be deadly, but for high blood sugar to kill you, it takes a long time of ignoring your treatments, which should not happen. Judah needs to take this seriously, but it is very treatable.

Low blood sugar can happen much more quickly. But -- and here's what I didn't realize for years -- your body will try to raise your blood sugar again, and usually it can succeed. You shouldn't rely on your natural reactions to treat low blood sugars, but if you make a mistake and don't realize what's happening or something, your natural defenses have a good chance of saving you.

By the way, one of the ways that the body does this is by releasing adrenaline. If you realize that, you have some idea of what a low blood sugar feels like. Imagine that jolt you get when you hear a door slam loudly when you're alone at night in a creepy house. But it doesn't just last for that instant until your brain kicks in and tells you it's not a monster, it's just a door -- it lasts much longer. You get the shaking, the sweating, the feeling of being too warm, anxiety, etc.
23rd-Mar-2013 02:05 am (UTC) - Re: Something reassuring, maybe
gentleeleos
You get the shaking, the sweating, the feeling of being too warm, anxiety, etc.

Yep. This.
23rd-Mar-2013 04:29 pm (UTC)
lawbabeak
I have a client who is normally on a pump, but had it taken away the first time he was in Blount County Jail. Granted, being in a jail that has no special diabetic diet and is lackadaisical about snacks and blood checks is anxiety writ large. But he said in his non-jail life that the pump is far preferable - he doesn't worry so much about being caught out somewhere without what he needs. Also, it pumps every few minutes, so he's on a much more even keel.

Yes, I bitched to the U.S. Marshals and Blount County later let him keep the pump another jail put on him. But, yeah, here's incentive for Judah to do his best to avoid police custody.
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