Diabetes Goals: 2016

2016 already? Time does fly. I'm not normally one for setting goals, but I've done this for the past two years, so why not? Also, I know it's almost January 3, but whatever.

• Keep my A1C at or below 6.5 all year. I spent all of 2015 at 6.5 and 6.4, so I think I can do it again this year. It feels so good to have your endo actually tell you good job on your A1C. 
• Use as much insulin as I need and not feel bad about it. Somewhere along the way it got implanted in my head (by a certain CDE I visited) that using more insulin is some sort of failing. As I've already established, I'm fairly insulin resistant. I exercise, and I've taken Metformin (to no avail). I'm still insulin resistant and it's not my fault. I didn't do anything to cause it, and not using as much insulin as I need just because I don't want to see a high number of units on my pump is just stupid. 
• At least try decreasing the high line on my CGM. Right now it's set to 170. I'd like to at least try it at 160 and see how it goes. 
• Have more good days than bad, diabetes-wise. Sometimes there's absolutely nothing you can do about the random nature of diabetes, but I'd like to do my best to control the beast.
• Make people laugh about diabetes-related things. I'd like to continue my lighthearted shenanigans on Twitter. 

That's all. I like to keep my goals manageable and reasonable. The only thing I might add is to make myself blog more, because I got really bad at it last year, but I don't want to push my luck with too many goals. ;)

Back to MDI

For the past two months I've been back on Multiple Daily Injections (MDI), and I'd like to talk about the reasons. I had finally hit the stage I never  thought I would: total device burnout. I love my pump. He's a purple Medtronic 723 named Henry. I use him in conjunction with a Dexcom G5. I never, ever in my life (until recently) thought I would voluntarily give him up. So what changed?

Henry and I just hit our 13 year anniversary. Okay, it hasn't been the same Henry the whole time, but I've still been on an insulin pump for 13 years. That's half of my life. For 13 years I never took a voluntary break. The longest I was without a pump was 3 days when I completely wrecked my pump at camp. There were two other times I went without, but they were both less than 2 days each. In 13 years I had at most 7 days away from my pump, total. Other than that I was attached almost constantly to the thing for literally half of my life. Thirteen Years. I was starting to feel a little bit tethered. 

In the months leading up to our anniversary I was looking for reasons to not just throw the stupid thing into a lake somewhere. I have variable basal rates that Lantus can't address. Tons of people would kill to have the luxury of an insulin pump. It's awesome that I don't have to stab myself with a needle every time I want to eat. I'm really bad at the carb game sometimes, and I don't have to inject myself again when I guess wrong. My blood sugar likes to play by its own rules most of the time, and I don't have to inject myself yet again when my numbers are doing their own thing. 

All of the above were swirling around in my head, and then I had a thought occur to me (and it sounded suspiciously like my mother). "Nobody is saying you can never go back." I started to weigh the options in front of me. What did I stand to gain by going back to MDI? My skin, for one. My hips and stomach look like a battlefield. For another, I wouldn't have something logging my every carb and unit. My endo would only know if I recorded it for her, and nobody ever said I had to. The biggest thing was my physical freedom. For 13 years I've picked out my bottoms carefully to make sure they could hold the weight of my pump. If I didn't have a pump, that wouldn't be a problem. 

I called my endo to see about getting some pens. I had worked out my Lantus dose a few months prior when I destroyed my pump at camp. I knew I wanted to use pens because I was given a pen of Humalog and one of Lantus when I messed up my pump at camp because they had a few laying around. My endo was super confused as to why on earth I would ever want to give up my pump. My A1Cs were pretty good (6.4) with the pump, so there was really no reason to change. I listed my reasons. After a little back and forth, she agreed that it was ultimately my choice, and she wrote a 90 day prescription for pens and pen needles. 

Almost 2 months in, and I'd forgotten how much I hated MDI. This is hilarious to anyone who knows how hard I resisted getting a pump in the first place, but I think that's a different story for a different time. As I said before, I'm not always the best at the carb game and frequently have to correct a few hours after a meal. It's not my insulin:carb ratio being wrong; it's just me (sometimes) being really bad at counting carbs coupled with me being quite insulin resistant. 

Speaking of being insulin resistant, my Lantus dose is pretty huge. It's 60 units huge. No matter where I inject or how long I hold the needle in my skin after injection, some always comes back out. The amount that comes back out varies, and I don't know how much this is messing me up throughout the next day.

As it turns out, not logging everything can have its downsides. Like forgetting if I actually took a correction dose, and if I did, when I did it. There's some guessing that can be done, but sometimes I just can't be sure I actually took a correction or not. My memory is pretty bad. 

The people around me aren't fond of watching me stick a needle into myself. This isn't a huge deal for me, because my health comes above their comfort, in my opinion. I'm not a total asshole though, so it does weigh on me. For what it's worth, I don't care at all what strangers think of my injections. I really, really don't. 

I'm fairly insulin resistant and carb sensitive, so I end up injecting frequently. I mean, I have to take insulin for carrots. There are very few foods that won't mess with my numbers. The sheer volume of injections is annoying. 

I'd forgotten about the bruising that can accompany injections. Now my skin isn't dotted with old infusion sites. Instead it's mottled with bruises from many shots. Even in the beginning when I was a good girl and changed my pen tip with every injection, I still got the bruises. 

I'm not a wasteful person at all. I reuse just about everything I can, and try to not waste anything if I can avoid it. This adds annoyance when I get down to the end of a pen. Let's say I have to inject 15 units for dinner, but I only have 10 left in the pen. Do I waste the 10, or inject 10 and then another 5 from another pen? It's frustrating, but I can't stand to waste, so I will usually inject 10 plus 5. 

Remember earlier when I mentioned my variable basal rates? Yeah, that really has come into play. Because I'm still wearing the Dexcom, I can see exactly what happens when I try to use Lantus for my basal. I'll go to bed around 120, then dip down to around 70/75 around 3 AM, and be up to 250 by 9 AM. Then I'll spend a good chunk of my day trying to get my numbers back to where I'm used to seeing them- under 130 most of the time. This is the biggest reason I want to go back to my pump. It's not the number of injections I have to take, it's not the bruises, it's not the inconvenience. It's the fact that  I can't manage my basal needs with Lantus, and then it takes me hours to get back to a reasonable level. Because of this, Dexcom is now estimating my A1C to be 7.1, up from 6.4. 

All in all, I'm not okay with the way my care has suffered since switching back to MDI. I'm frustrated with the higher numbers I'm experiencing and I'm probably going to be back on my pump by New Year. 

Diabetes Goals: 2015

Okay, it's January 3 and I have yet to commit to any New Year's resolutions. So here we are. It's good to have goals, it really is, but I've never been a huge believer in changing everything overnight just because the year on the calendar has changed. My goals aren't really specific to it being a new year; they're things I've been steadily working on anyway. Just as it's good to have goals in the first place, it's also good to have them written down and shared. At least for me, having my goals out there gives me a sense of responsibility to stick to it. So, diabetes goals...

• Bring A1C below 7.  I rang in 2014 with an 8.3, and I'm ringing in 2015 with a 7.1. I can do this, I really can. How? Listen to my CGM more than I do. I need to use it to live closer to the 100 line than the 150 line. Last year I started my CGM and I started changing my mindset toward numbers. 200 used to be my upper limit, and over time I've bumped it to 180. I'm afraid that if I bump it any lower it will alarm every time I eat. I think listening to my CGM will make the biggest difference. 
• Stop obsessing over BG numbers. I know it sounds counter-intuitive given my goal of decreasing my A1C, but sometimes I drive myself nuts stressing out over going to bed with my BG at 150+. I stress myself out sometimes for no good reason other than I'd like to see a better number on my meter. 
• Eat fewer carbs. This is a huge challenge for me. Not only are carbs the most delicious thing on the planet, but I'm a vegetarian who hates eggs and cheese. These are the go-to snacks and meals of the low-carbers I've spoken to. I know full and well I'm going to fail this so hard. I like salad and veggies as much as the next person, but potatoes and pasta are the best. 
• Like myself more. This isn't even related to diabetes, mostly. I've always had a hard time liking myself, from the things I say to the way I look in the mirror. Especially the way I look in the mirror. It's hard to admit, but I'm a bit vain. Yeah, the one who hardly wears makeup ever is actually vain. It's something to work on. 

There are my four goals for 2015, or just for life in general. Last year I achieved my goals by May. I'll give myself until June to check back for a progress report unless I beat my record (doubtful). 

Update on A1C and Diabetes Goals

In January I posted my diabetes-related goals for the year. In March I posted my updates. To recap, my goals included getting my A1C below 8, figuring out how to exercise without dropping BG too much, and getting a CGM. My A1C went from 8.9 to 8.3, and now we are at....

7.1! That is a big improvement from 8.3! I can't help but feel... proud (?) of myself for this. I really don't have much pride in myself, so this is a super big deal. Also, my doctor never sent these results to me, so I had to face my crippling anxiety caused by phone calls (I'm not joking) to call the office to request my results. So, TAKE THAT, anxiety. 

In terms of remembering to change my set, I can't mention my calendar/sticker system enough. It really made the difference for me. Change the set, get a sticker on the calendar. It sounds so simple. It is so simple. It is exactly what I needed to get on track, though. 

Goal 2: exercise without BG tanking. Check. I now check my BG about 30 minutes before I plan to exercise and if I'm in range I disconnect then, before I start sweating. I like to hover around 130 when I go to the gym. It gives me enough of a buffer against low BG that I feel comfortable, but isn't high enough to make me feel gross or anxious. When I go to the gym I take a lanyard, and on that lanyard is a pouch with my meter inside and my glucose tab key chain. 

Goal 3: Get a CGM. Also Check. I've been using my new Dexcom G4 for 6 days now and I love it. The first night it woke me up with a low. Since then I've felt more comfortable going to bed, especially if I'm around 90. With my Dex I know the chances of crashing because of my trend graph. So far, so good on that.

Well, it's May, and I've completed the tasks I set for myself. What now? Get my A1C below 7! Reduce my post-meal spikes. Move more! Weigh less! Feel better! 

Update on 2014 D-Goals

In January, I posted my 2014 diabetes goals on this blog. They were few and not too lofty. How am I doing?

Bring A1C below 8. Going in, my A1C was 8.9. It was checked again in February, and now it's at 8.3. That number includes December, the month of Christmas cookies. I believe I am on my way to doing better, but the next A1C is going to include my 2 weeks with a weird pump where my BG was consistently 200+. We'll see.

I'm getting better at counting my carbs, and being honest about them. I'll look things up on my phone when I'm out eating and not sure. The biggest barrier to accurate carb counting was my unwillingness to put large carb amounts into my pump. I'm not sure why. It would send my BG high, but I still just wanted to not have that many carbs in my pump. So in addition to actually eating fewer carbs, I'm more honest about the ones I do eat.

I'm changing my infusion sets more regularly. I used to not change them until my absorption was crap or my set hurt. Now the calendar in my kitchen is full of Lisa Frank stickers. I get a sticker each time I change my set. It helps me remember when I changed my set, and I'm more likely to change it on time. I think I've only gone more than three days once since January. I'm also trying new sites, like my arms. I thought I would hate using my arms, but once I tried it I fell in love. The absorption is awesome, and it leads to discussions about diabetes with strangers. Bonus!

I've been exercising without my pump. It's an adjustment to actually do anything without it. I check my BG after 30 minutes, and if I'm going too low, I pop a glucose tab or two. They're pretty low-calorie and they get the job done. But then I sprained my foot, and everything went to hell.

Still no CGM. I didn't bring it up at my appointment, but I might next time. I don't know why I'm hesitant to ask, but... yeah. I've got nothing. I know I have a long way to go to bring my BG in line, and I think this could help. I'd catch the highs before they're at WTF levels.

So that's where I am in terms of my D-goals. Hopefully I have a better update in a few months! 

I Should've Kicked You With My Sprained Foot.

I hurt my foot. I am, without a doubt, one of the clumsiest people on the planet. I hurt myself without even trying. My foot's been bothering myself for a while now, so I went to my Primary Care doctor. When I got there, I was told that I'd be seeing a different doctor because mine was out today. Okay, fine, whatever.

After a general check of my weight, blood pressure, and pulse rate, the doctor came in to see me. I've never met this guy in my life, so I didn't know what to expect. I looked him up on my phone while I was waiting. He is a certified family practitioner, with a specialty in family medicine. Okay. He examined my foot, said I'd be fine, gave me a prescription anti-inflammatory, and told me to get an Ace bandage. He was scrolling through my file on the computer and getting ready to send the Rx to the pharmacy. Then he brought up my diabetes, and that's where things got ugly.

"Oh, I see you're a type 1 diabetic. How's your diabetes?" he sounded conversational, so I told him I was managing. Usually doctors leave it at that. Nope. "What's your A1C?" Eight-point- "that's not managing! That is terrible! You're on a pump, there is absolutely no reason you should have an A1C above 7. What? Are you not checking your sugars? Not bolusing? Sneaking candy?" That's when I used my stern voice to tell him I test a minimum of 6 times per day, correct when needed, and bolus for everything. "Well obviously something is not right. Do you actually see an endocrinologist?" Yes. Every three months. Given my circumstances, she is okay with my progress, and- "any endocrinologist worth their salt is not going to be happy with an A1C that high. What is your BG when you wake up? When is it the highest?" Around 100, usually mid-afternoon, but I have a non-constant schedule, so finding patterns is difficult. "Well, if you're high in the afternoons you need to increase your basal rate. Your carb ratios should remain constant through the day, but if you're higher after lunch, you need to increase your basal rate." Okay, whatever. At that point, I was over it, flustered, and taken aback. So I just listened to him talk, nodded, and left as soon as I could.

I'm still finding my voice when it comes to standing up for myself. I can defend other people all day, but I'm still working on advocating for myself. I didn't want to keep going with this doctor about diabetes, mostly because he seemed to have an overly simplified view of it. He was of the opinion that diabetes is a static, formulaic disease. Input the right number of insulin, and there is ZERO reason you shouldn't get the right numbers.

If I run into this again, I don't know what I'll do. Has anyone else dealt with this? 

Why I Share My Imperfection

My most recent A1C results are in. 8.3. I swear it was going to be so much better than that. I'm actually very disappointed with that number because my day-to-day numbers do not average 200+, even considering the Christmas feast week that would be included in this result. I don't know what's going on, and it upsets me. As a matter of fact, I'm a little ashamed that I can't get things under better control.

If I'm so ashamed of my crappy results, why do I bother to post them on the internet for everyone to read? I do it because I think people like me need to share our stories too. A lot of places on the internet are run by diabetics with sub-7 A1C values who like to pretend that diabetes is easy for them and should be easy for me. For me, diabetes has never been easy, and getting my numbers in line has been a constant struggle since I was 7 years old. Somehow, I hope I'm reaching someone who is roaming the internet looking for people like them, people who are struggling to control this beast, but not seeing the results they'd like.

It's been a long battle for me to even get my A1C down to the 8's. I found an old lab report in my car the other day, dated November of 2012. My A1C was close to 12 at that point. I just... yuck. I mean, yuck. And I've been trying since January of 2013 to actually do something about it. 8.3 is the best I've been able to get. It's very discouraging. Sometimes I feel like giving up because it's never going to get better, but then I realize there is absolutely ZERO chance it's going to get better if I don't try.

I've never been a quitter. I hated playing basketball when I was younger, but I was pretty okay at playing, and I stuck it out to the end of the season. I'm a piccolo player, and if you know anything about piccolos and music, you'll know how much work I've put in to being able to do this 90% of the time:

Why should diabetes be any different? It sucks, and I have to hit a LOT of numbers out of range, but maybe, just maybe, I'll be able to consistently hit it in range consistently someday. 

I've been trying so very hard, and my results are not something I'm super proud of. 8.3. I can't remember the last time I had candy when I wasn't low. I miss desserts and waffles and all those other delicious things that make my body unhappy (this is where I'm happy pizza doesn't mess me up as badly as it seems to mess up a lot of people). I still eat these things, but I know the consequences, and that prevents me from eating them frequently.

So, in short, I share my diabetes imperfections in hopes that I can somehow help people in my situation feel less alone. Or maybe if there is someone out there who needs the kick in the pants to start taking better care of yourself, know that it's possible. Also know that the struggles is real, and just because you're doing everything right doesn't mean the numbers will reflect it. 

D-goals for 2014.

Inspired by the DSMA chat last night (1/8), I set out to make a list of diabetes goals that I have this year. It's not a long list.

• Bring A1C down below 8. How?
• Get better at carb counting. After 16 years, I've got the basics. What I need to get better at is determining the "weird" factor. For example, my body is weird with peanut butter sandwiches. Even when I measure the peanut butter, my blood sugar goes higher than it should, and I have to give an extra unit of insulin when I eat a PB sandwich. I need to identify more food patterns like this so I can bolus more effectively.
• Choose the lower carb option. This is self-explanatory
• Change my sets more regularly. I need to start putting my set changes on a calendar so I can keep better track.
• Figure out how to exercise without dropping 50+ points. It's annoying. Even when I disconnect my pump, my blood sugar drops at least 50 points when I exercise. It's not a big deal if I start out around 160, but anything below that usually ends with a snack. Which doesn't help me lose any weight, which I would like to do.
• Make this the year of the CGM. I've wanted one for a long time. Really. I've done my research on them, but I haven't brought it up with my endo in over a year. This falls under my non-D goal of being more assertive. 

That's it. That's my goal list. I don't normally set goals. Usually I give myself challenges like seeing how many days I can go without breaking 200. It's not a "go X days" goal, because diabetes is NOT as formulaic as we would like it to be. I only let myself get upset about breaking the streak if it's something I could have prevented, like forgetting to bolus, not changing my set in time to prevent bad absorption, etc. 

Someone remind me of this post in June. I'd like to see how I'm doing, and kick my own ass for not having had the CGM talk by then.

A1C, WTF?

I went to my endo last week, and had my blood drawn, as is pretty normal. Today I got the results of my blood work. Let me just day, I knew it was going to be bad news. My blood sugar has been all over the place. I have a brand new allergy (?) issue that is still being figured out. For now I'll blame that, and the bone infection I got overnight from a suddenly abscessed tooth. I went an entire week where I couldn't get my BG under 200 without rage bolusing and eating absolutely nothing. It was nearly as bad as the week I had to be on steroids. I tried all the dummy strategies: new insulin, new set/reservoir from new box, injecting correction boluses. I had very minor results. But, I got my A1C back, and it was bad. How bad? 8.9 bad. EIGHT POINT FREAKING NINE. Fuuuuuuuuh.

While going over these episodes of complete diabetes garbage with my endo, I said I knew I shouldn't have, but I just got so frustrated at seeing those bad numbers so I stopped testing as much (I didn't stop, but I cut my testing in half). Then she said something to me that inexplicably made me feel better. It wasn't a calming platitude, though. She said, "when you get mad at your numbers and can't figure it out, that's when you call me and we'll figure it out."

I suppose that's how it's supposed to work, really, this doctor-PWD relationship. Every endo I've had in my adult life has sucked pretty spectacularly. For the first time since high school, I feel like I actually have someone at my back. I know it's up to me to keep up with the day-to-day, but it's good to know your doctor is actually going to help you. My last endo was so distant he barely talked to me when I was in his office. He talked at me a lot. That didn't help.

Now I'm off to do things that will "improve my health" as recommended by my primary care doc. That means eating nothing, vacuuming (allergens), washing my sheets, and something, something, see someone else it's not his problem. Guess which doctor I'm replacing next!

On and Off the Wagon

So, for several years I have had pretty bad control of my diabetes. There, I said it. I know it was bad, and I know it was wrong, but I was doing it anyway. I feel like most of the people in the diabetes online community have some wicked good control, or at least decent. I feel this is a coming out of sorts. I hope this can help anyone who has had bad control get back on track, or at least let them know they aren't alone.

This time last year, my A1C was about 12. Seriously. I don't know how I did it, but I survived for quite some time with A1C values above 10. Aside from being more thirsty than anyone around, I didn't feel too bad. I could exercise, think clearly, and see very well. I knew what I was supposed to be doing, but I never did it. Why? I'm not sure. It wasn't all laziness. Some of it was just apathy. I was experiencing some serious diabetes burnout. On average, I did between 0 and 1 blood test per day and bolused randomly. I changed my set when the old one fell out, which could be up to 14 days. I was bad news.

Things began to change for me when I got a new endocrinologist. My old endo (OE) was pretty bad. I was not taking care of myself, and he was content to let me continue that way. He put me on Metformin, which is usually described for type 2 diabetics. He said it would decrease the amount of insulin I needed. In reality, it did nothing to my insulin needs and gave me a terrible stomach ache for as long as I took it (over a year). After a while you just get used to feeling like garbage. I never did get a clear reasoning for the Metformin.

One day I called to make an appointment and was told that OE no longer worked there, but I could see the new doctor (NE). When I showed up to the appointment, they had no records of what medication I was on. OE had never made record of what he prescribed me! After sorting out the medication record, NE told me point blank that I had really crappy control and I needed to do better. She asked me why I wasn't taking care of myself. I (obviously) couldn't give her any good reasons. How hard is it to do a blood test? Then she changed a bunch of my basal rates and carb : insulin ratios. She then scheduled me for a follow up two weeks later with her nurse, and made an appointment with me one month later, when my prescriptions were going to expire. She asked me to do four blood tests every day for two weeks: breakfast, lunch, dinner, and bed. Okay, I could do that. I started testing and bolusing accurately, and my blood sugars plummeted. It felt strange because NE lowered all of my insulin needs before asking me to start testing. I thought maybe my carb counting was rusty, so I started being super, super vigilant about my carbs. I was still low all the time. When my blood sugar was normal it would bottom out as soon as I did anything active.

When I went to my follow-up appointment with the nurse, we changed a lot of my settings again, and added a few new basal rates. A month after that I kept going high. I had changed more pump settings. I think I'm now on some good rates.

 As a result of all of this, my A1C is now sitting at around 8.5. While it's not perfect, it's much better than my 10.5 A1C. I feel like right now I'm on the right path. I test about 7 times per day, minimum. I bolus regularly.  If I'm not sure about a carb value, I'm more likely to look it up than just guess. I mean, sometimes I do guess, but nobody's perfect.

Now that I have this off my chest, I feel much better. I feel honest. :)