You can’t beat waking up at 5:30 when it’s Diabetes’ fault.

Last night, I tweeted about how my blog has been sadly neglected since I started my new job working at the baby store in my hometown. I’m working full time and still adjusting to being on my feet all day, so when I get home typically my brain and body are not in the mood to come up with a blog post. Hopefully in time this will work itself out and I’ll once again feel like blogging regularly, but for now you get this rambling 5:30 am post because I am rather frustrated with the big D at the moment.

It started like any other chilly night. Missouri is experiencing unseasonably cool temperatures due to a recent bout of storms, rain, and oh-so-unwelcome flooding. (Begin side note: That link is for a city about 3.5 hours away from me, but it’s also where my cousin grew up and where my grandparents lived for many years, meaning my family has connections there, plus it’s kind of awful so please send thoughts and prayers their way. End side note).

Because it was chilly, I used a wintertime tactic perfected during my frigid winter in Utah, the pile on the blankets and wrap yourself up like a papoose  technique.  Somehow, this resorted in me tossing and turning all night long. This isn’t necessarily a new thing for me, and while I can’t seem to locate the post right now, I can tell you that the one time I’ve had ketones and not been sick was one night when I rolled over and my pump site came loose, causing me to wake up well over 400 and to a nice purple urine ketone strip.

But once again, I digress. It is 5:30 am, you know.

So this morning, around 5:30 am, as I am doing my typical tossing and turning, I feel a pain around my pump site. This is nothing new, sometimes it pulls but as long as I unwrap the tubing from around my body I can relive the pressure and prevent the site from pulling loose. Not this morning. This morning I pulled that sucker right out.

A Renactment!

I kind of stuck it back on and proceeded to try to sleep. I had visions of the cannula magically finding its way back to it’s hole in my stomach. I drifted in and out of sleep the whole time dreaming of the box of infusion sets all the way in the living room (I had just used my last one from my previous shipment), and of my meter reading “HI” and being too sick to go to work (I’ve NEVER missed work due to diabetes).

At this point, I ripped the site off and went to get the stupid box filled with infusion sets.

When I got back to my room, I didn’t have any scissors to open it. I had to improvise. While digging in my purse to find my keys, still half asleep Sarah found the fork she ate lunch with yesterday. So, I opened the box with a dirty (but wiped off) fork. After gathering the necessary supplies for 5am EMERGENCY SITE CHANGE, I grabbed my pump and inspected the old infusion set.

It looked like this:

BLOODY SITE!!!

Needless to say, the cannula was flat against my stomach and the sticky part had a drop of blood on it.

Good thing I freakin’ got up.

So a standard site change took place, followed by a blood sugar test. I was somehow, after a late night, PMS induced (sorry male readers) bowl of lucky charms and a site malfunction, I was only 141. Not bad. Not even  high enough to warrant a correction for me at this point. (My insulin needs have been changing drastically, but that’s another post for another time. Perhaps tomorrow?)

And thus ends the tale of why I am writing at 5:30 (now 6) am. Normal time for some people to get up, but not for this girl who’s work day starts at 10.  (Call me lucky, but this possessor of a BA degree makes minimum wage).  Why did I write it now instead of going back to sleep? One, I was motivated. Two, I know I’ll fall back asleep eventually (before 8:30) because that’s just how I roll. I’m still coming of college sleep schedules, OK? And three, you, my fair readers, deserved a blog post for your patience with me as I adjust to life as a Big Person (aka an adult with a job) once again (please ignore the fact that I am living with my parents at this point).

But once again I’ll repeat the phrase it seems I should change the title of this post to, I digress.

Good morning.

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Seriously, I just want to be cool.

I’ve wanted to be a writer for as long as I can remember writing.  I started writing short stories when I was little, kept journals off and on, and countless times started (and sometimes, finished) “novels” about my daydreams (primarily about boys) when I was in jr. high and high school. I’ve been blogging since the early high school days, using old standards like Free Open Diary and Xanga, back when those sites were cool and everybody used them to gossip about one another and talk about our new boyfriends.

I never really thought about blogging about diabetes until I “accidentally” stumbled across the DOC two summers ago and realized, ‘Hey, I’m like, living with this thing that is pretty complicated and hard but also kind of entertaining.’ And I never wanted to blog about depression (Because OMG my future employers are probably reading this as we speak! HI GUYS, HIRE ME!) until I realized how common it actually is in America (a veritable mental health crisis comparable to the obesity epidemic – maybe related to – there is a thesis topic for you) and if an employer didn’t realize that a high percentage of his or her employees is probably already dealing with this disease and their company is functioning quite well, thank you very much, then I didn’t really want to work for them anyway. (Whew. Run-ons are my specialty).

But seriously, I just want to be cool.

No, I don’t have a personalized URL or any fancy advertisers and no, I don’t come up on the first page when you google “diabetes blogs.”  But all I want to do is become a certified diabetes educator and write and talk to people about diabetes for a living.  Is that so much to ask?

I even went so far as to list Sarahndipity as my employer on my facebook page. Heck, even my neglected LinkedIn profile focuses on my work in the diabetes community.

The bottom line is, living with diabetes isn’t easy. No one has all the answers, and that’s really the message I want to send. The whole damn thing is about trial and error, over and over again, and it’s a bit of a far reach for a perfectionist like myself. (Hear that, future employers? My weakness right there in grey and white – now you can skip that awkward question in my interview). (But it’s ok if you don’t).  But that’s the whole point of d-blogging, right? To let others know that they are not alone in their frustrations and idiosyncrasies that come with having a chronic illness?

Ron Burgundy is kind of a big deal. People know him.

Sometimes, we just have to remind ourselves of that. The reason we’re here, the reason we wake up at 5am and can’t sleep because we have too many bloggy thoughts floating around in our brains (well, I mean, I do that).

I mean, this isn’t 2001. There are a lot of bloggers out there in the interweb world. And, for now, I don’t feel like I stand out. But honestly, I don’t have to be kind of a big deal (although I wouldn’t mind it), so long as I am helping people along the way.

That’s the most important thing, right?

Have you ever felt this way?

Have you ever spent your day with a weight on your head, a clamp on your jaw, lead weights on your feet, and duct tape on your eyelids?

Have you ever stood up and immediately fell back down? Felt like your world was spinning, or like your heart was going to burst out of your chest bearing helicopter wings? Felt like your head was wrapped in cotton? Felt like your head moved left and your eyes stayed right? Felt like you were sweating enough to wash your dog?

I have. I would say I feel one of these ways on an almost-daily basis. Whether my blood sugar is high or low, I’m fighting a feeling of exhaustion and weakness. Only when I am in normal range do I feel OK, unless I am recovering from said highs or lows, in which case I still feel crappy. It makes it hard to get anything done. And people wonder why diabetics feel depressed.

This is what it feels like to deal with this disease. It’s not something easy. It’s not as simple as watching what you eat and taking a shot now and then. It’s not just pricking your finger a few times a day. If you have type 2, it’s more than swallowing a pill! It’s always wondering what exactly is happening inside your body, and wondering whether or not you really have control over it.

If you have never felt this way, I hope you never do.

Welcome to diabetes. Welcome to my life.

More On Trust

I’ve been thinking a lot since the Animas cartridge recall. (If you had recalled cartridges, you should have received your replacement shipment by now, but if you use Animas and want to be sure, check your cartridges).

I used the recalled cartridges for almost two months before they were recalled. And in those two months, I had a lot of problems with high blood sugar. Sure, there were other reasons, but it made me think. I could have gone into DKA without a notification from my pump that there was an occlusion due to the defect in the cartridges. Even if I had noticed, I would have changed my site and left the cartridge. It’s scary to think about.

I’m not mad at Animas, really. Things happen. Mistakes happen. What is on my mind today is how much trust we put into our medications and medical devices. We trust that our pumps will deliver insulin in the right amounts when we tell them to. We trust that our meters are giving us a number close enough to our actual number so that we can dose the right amount of insulin. We trust the FDA to regulate the fact that our insulin is insulin and not something toxic or just saline. We trust the pharma companies to sell us medication that works at a reasonable price and to make medical devices that work – to test them and ensure that that there are plenty of saftey checks to avoid life threatening malfunctions.

Take meters for example. 20 percent is a big margin of error, and that’s the FDA approved margin. But on Wednesday, I tested literally five minutes before I went in for my lab. My meter read 193. My endo told me at my appointment the next day that my blood sugar at the time of draw was 158. That’s a 35 mg/dL difference – over 20 percent. That’s almost two full units of insulin, which would put me 40 mg/dL below my target range, at 65 instead of 105. That my friends, is scary, especially in someone who is hypoglycemic unaware.

The problem is, we can’t live without trusting in these things. Most of us can’t count the milligrams of sugar in our blood ourselves. We can’t extract insulin from dead animals or create it synthetically ourselves, and we cant’ live without the stuff. So we trust, and we continue on, and we just hope that companies catch their mistakes before we or someone else gets hurt.

Yes, it’s scary. But unfortunately we have no choice.

Friday Five: I Love My Endo and other tales of yesterday.

Tidbits from my endo appointment yesterday:

• First of all, she in no way scolded me (I actually didn’t think she would, she just kind of ignores the situation if you aren’t taking care of yourself – i mean honestly, if there are no numbers in your meter, what’s she supposed to do?). We talked about the weather and about my travels, and I explained to her that I’d be leaving again soon and any major changes I wanted to make now while I was at home.
• Kicked up basals from midnight-3am. This is somehow supposed to help dawn phenomenon. I have no idea. She also suggested my post-wake up 3 unit bolus might just be something I have to do and not something I can work into my basal.
• A1C came in at 7.6, only 1/2 a percent higher than before (with significantly fewer hypos). She was actually OK with that (and it was lower than I thought). I guess I’m OK with it, especially because I was expecting closer to 8.
• She wants me to start symlin again. She thinks this will help with not only always feeling hungry but overall averages since the high half seems to come from post postprandial spikes. Seems as though this would be the time to do it, considering I’ll be at home for a few more weeks and can figure out the ups and downs while I’m off work and around people who know me.
• Yesterday I read my email regarding the Animas Cartridge Recall. Discovering I only possessed ONE cartridge that was not affected by the recall, I spent 45 minutes on hold with Animas before giving up. I mentioned this to my doctor (I was thinking she’d give me a script for lantus), but she actually managed to turn up two cartridges that should get me through the weekend and hopefully I’ll receive my replacement cartridges early next week.

I hope everyone has a great weekend! I for one feel more positive about myself than I did last week.

Going to the Endo to get scolded? I hope not.

I tweeted this this morning and it’s the perfect tweet-for-a-blog-post to sum up how I’m feeling about this morning. I’ve edited the twitterspeak out of it:

Endocrinologist  Appointment today. Being honest with her:

• I can’t afford sensors right now
• I’m not testing enough without them
• and I am eating everything in sight.

Maybe she will have some good ideas to combat depression/boredom, but based on my previous experience with her, she’ll smile and nod and kick me out the door. She’s only good when I’m good.

(I’m hoping she proves me wrong, because when I’m good, she’s really good.)

The Most Awesome Thing(s)

This post brought to you by #dsma Blog Carnival
Honestly, I have lived my life without thinking about what I can do with or without diabetes. And the most awesome things I know are yet to come. Here are just a few pictures of some really awesome things I have done despite having diabetes.

 

2008 – Costa Rica Mission Trip

I wasn’t the only type 1 diabetic on this trip! One of my role models, a church friend, also made the trip!

Dinosaur National Monument Internship – Winter ’10-’11

 

2005 – Katrina Relief

2001 – Featured Performers at Missouri State Basketball Tournament

2006 – Family Ski Trip

2004 – Best Musical Performer (Southwest Missouri Cappies Awards)

 

I’m Burnt Out.

Those three words are what I am going to say when I go to the doctors on Thursday and get what I assume is going to be a less-than-exciting A1C result.

I’m burnt out on testing.

I’m burnt out on carb counting.

I’m burnt out on eating low carb.

I’m burnt out on exercising and I don’t even do it that much.

I’m burnt out on wearing a CGMS.

I’m very burnt out on the cost of diabetes. It isn’t fair.

I’m burnt out on wearing an insulin pump…

…but I can already tell you that if I switched back to MDI, I’d be burnt out on that too.

I’m burnt out on not having any money.

I’m burnt out on not having a “real” job.

I’m burnt out on living at home even though I’ve only been here (less than) two weeks. Sorry mom, I’m 24.

I’m burnt out on being 24 and I’ve only been 24 for 2 weeks!

I’m burnt out on trying to be a good friend to less-than-reciprocal friends.

I’m burnt out on site changes.

I’m burnt out on running out of insulin in less than 24 hours…

..but not on eating enough to make this happen.

I’m burnt out on this economy, this country, this world.

Just burnt out. That’s all. NBD (No Big Deal).

HALP!

I’m going to admit that this has been happening for a few weeks now. It happened when I first got to Utah, then it calmed down and I was in range, for the most part, for a couple of months. Now, since the temperatures plummeted and the holidays consumed me (or rather, I consumed lots of sugary carbs), I’ve been seeing numbers like this often. I already increased my basals a little bit but because I am living alone now I am afraid to adjust any more.

I was supposed to have an endo appointment in November, but when I found out I was moving out here I canceled it and rescheduled one for March. After March, I probably won’t be able to see her until October. It’s not really a good thing when you’re gallivanting around the country trying to gain enough experience for a permanent job, because consistently seeing on endo is difficult to do. I don’t know that my canceled appointment would have had any effect on my blood sugar control, but I know that I feel guilty for missing it, especially because it’s my guess that if I got an A1C test right now my level would be over 8% after I worked so hard to get into the 7’s.

I feel like a fail. I also feel sick all the time.

Hai Endo, Halp!

Three Days To Go

Three days until I’ll get to experience the wonders of traveling with insulin pumps and CGMs and newfangled security measures. I’m not really nervous about it, because of course I’ll take the pat-down over killing my pump and CGM transmitter any day. But today I read an interesting account of Sara Knicks’ experience with the scanners which lead her to some important information.

Two types of scanners apparently exist on the market. One of them, called the  L3 ProVision scanner, actually doesn not use the x-rays that might harm our pumps (“our” meaning “belonging to us people with diabetes”). So, if your airport and your checkpoint uses these types of scanners, you can actually go through the scanner with your medical devices on. Score! I am still not positive that the airport in my small town will even have a scanner, but I am nearly positive that flying back, being that I will be going to a bigger airport, I will have to deal with this stuff.

Even if I have to get patted down, I’m not super worried about it. As I mentioned before, I experienced this the first time I flew with my pump and CGMS, and it wasn’t a big deal. But the lady was very nice and the airport wasn’t really busy, so that helped.

Traveling with diabetes is stressful enough without airport security. And yes, I could just unhook my pump while I go through the scanner, but I will not be removing the transmitter from my CGMS. There’s too much risk of knocking the sensor loose and causing it to fail, thus wasting money on the sensor. And I won’t fly without Dexcom, because with the stress of travel having a close-to-real-time idea of what my blood sugar is doing is pretty essential to avoid highs and lows.

My four-day trip home will be over too soon, I already know. But I already have some get togethers planned with friends and, of course, family. I am pretty excited that I get to go to Christmas Eve service at church, since I haven’t attended church in forever due to working every Sunday. Family is so important to me, especially around the holidays, and I am blessed to have the opportunity to spend this holiday with my family.

What are you doing for Christmas? What is your diabetes travel plan? Do you do anything specific every time you travel (besides test-then-drive)?