50 Shades of Red

Red: the thematic color of the last few days.

The first red in this story was the red of my 6-pack cooler packed for a tubing adventure. For those of you who don't live near a river, this tubing is not related to insulin pumps or being pulled behind a boat. This tubing refers to sitting on an inflatable tube, drinking beer (or Diet Coke) and floating down the Chattahoochee River. I've never done this type of tubing before, but it was my boyfriend's birthday and he wanted to go with our friends. It was an impromptu trip, and I had 30 minutes to get my things together. No time to plan for diabetes, really. I did have time to do this, as my Dexcom sensor was about to fall off.

The second red was the small dry-bag I purchased on the way to the river. I packed it with my meter, hand sanitizer, and my CGM receiver. That's all that would fit, and the store only had one size of dry bag. I was promised I wouldn't get very wet, so I clipped my pump to the very top of my bathing suit. MM says their pumps are water resistant, and I've accidentally gotten a few of them quite wet without effect. I've been thrown in a pool, waded into the ocean, and watched an entire football game in the rain and my pump was fine. I wasn't worried. I had to borrow a raft from my friends because I've never done this before.

The third red was blood. This blood came from my thigh where I hit it on a rock when my borrowed raft broke out from under me. My friends saved me from drowning or being pulled around by the river. All in all. I was submerged for maybe 10 seconds. When I calmed my breathing, I checked my pump. I was shocked to see the screen filled with water. We stopped 30 minutes later to eat, and some of that water had turned to steam. It was difficult to bolus for food, but I managed. The pump was still working, despite being very, very wet. One of my friends rigged my broken float and traded with me. We were off.

The fourth red was caused by blinding pain when I hit my foot on a rock when the second tube I was using sprouted a hole and dumped me out. Another one of my awesome friends again traded tubes with me because, as they put it, they're more water resistant than I am. At this point, I chucked my pump to someone in a more stable tube, who gave it to someone with a larger dry bag.

The fifth red was figurative. I was angry when I realized I had to get a new pump. I called Medtronic as soon as I got back to my phone. I was promised a new pump within two days. I called them at 8 PM on a Sunday, so I figured they wouldn't have time to overnight one. I saw more red when I realized I would have to drive to the far CVS to pick up emergency Lantus. I was more angry when they told me it would take them over an hour to fill my one vial prescription. I'm usually pretty calm an understanding, but I can freak the eff out when it involved my diabetes. My BG at the time was 98, but I knew that wouldn't last, especially because I would be eating pizza before picking up my Lantus. Unfortunately, Henry ended up looking like this:

The sixth red was the marinara sauce I managed to spill while injecting Humalog with a syringe. After a long day in the sun/water, we were all craving carbs. I had a stromboli, and it was delicious.

The seventh red was blood again. This blood came from the site of my 48-unit Lantus injection. It wasn't a dot of blood, either. It was a blood flood.

The eighth red was the unsettling shade of fuschia on my urine ketone strip when I woke up to a BG of 360 the next morning, despite going to sleep at 120.

The tenth red was the giant red bruise on my foot from hitting it on a rock the day before. It hurt so bad I could barely walk. I went to the urgent care doc and spent three hours waiting to hear that I have a bruise. No break, possibly a nasty sprain because I can't walk. I was instructed to take it easy, avoid walking, and stop carrying my heavy backpack (because obviously my books will just magically carry themselves to my classes). I still can't walk well, but I don't want to use crutches (I might use them to get to class so my lab partner isn't so mad at me for missing class on Monday).

I'm no longer seeing red, but my brother missed the delivery of my new pump this morning. I went online this afternoon, and scheduled a self pickup for this evening. Lantus doesn't seem to do much for me, so I haven't seen many numbers below 200 in the past two days. I can't wait to get my baby back!

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. 

From the trenches, reporting from the endo's office

Somebody once wrote: Hell is the impossibility of reason. That's what this place feels like. Hell. I hate it, and it's only been an hour. 

Okay, I took a slight liberty there. But I was at the endocrinologist's office today, and I couldn't help but draw the comparisons. The first step: Separate me from things I find comforting.

They took my pump and I feel naked. #endovisit
— Pancreassassin (@Pancreassassin) February 5, 2014

Of course, I did get it back, but it's the principle that is dirty. The left me sit to rot in boredom. Sure, I had a heap of textbooks that I could read, but they really wanted me to suffer like that? I did use the tools at my disposal to keep my mind sharp: text books and a feeble LTE connection. I needed to make sure those on the outside knew of my suffering.

I'm tired of waiting and I've only been in solitary confinement for 15 minutes. #endovisit
— Pancreassassin (@Pancreassassin) February 5, 2014

30 minutes in solitary. I think they're trying to break me. #endovisit
— Pancreassassin (@Pancreassassin) February 5, 2014

I was onto their trickery.

It's mental warfare. They want me to be so depraved of human contact that I will spill all my secrets. They can't break me! #endovisit
— Pancreassassin (@Pancreassassin) February 5, 2014

And then finally... it got worse. So much worse.

Been here long enough that the Muzak is repeating. #endovisit
— Pancreassassin (@Pancreassassin) February 5, 2014

This is an office run by sadists. They want me to be off of my mental game so I will spill my diabetes secrets. They want me to admit to eating four cookies on December 15th. D'oh! My mind is still mushy from the abuse.

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. :)