“You can eat whatever you want.”

That’s what they told me. I don’t remember who exactly, but it was someone at Mercy Children’s Hospital’s diabetes center in Kansas City circa 2000. After 2 years of taking regular and NPH insulin, which to be brief, put you on an insane diabetes roller coaster, I was switching to multiple daily injections and taking insulin to cover the amount of food I ate instead of eating to cover the amount of insulin I ate.

It was supposed to prepare me to get an insulin pump, but it would be nine years before I’d actually complete that process. At this time, I was rejoicing in eating, well, whatever I wanted. Every time my parents would say something to me, I would retort back with, “I can eat whatever I want as long as I take insulin for it.” Cakes, cookies, candies, even slurpees and ice cream, anything was fair game.

It was then that the weight gain started, I know. I mean, the two years before that my body had been recovering from a huge shock where I had been so thin I was almost dead, just before diagnosis. But eating whatever I wanted – no limits, no restrictions – this was heaven. And somehow, it caused habits of disordered eating that have been following me ever since.

I still remember those first two years. I remember snacking on cheese and diet coke when I would get hungry. I remember forcing myself to eat just a little bit more when I wasn’t hungry enough for the amount of food I needed for a meal. I remember hoping my blood sugar would get low, just so I could eat some of the orange slices my dad had in the cabinet.

I remember sneaking food and lying about my blood sugar. I remember being found out by my doctor when my A1C results came back and how ashamed I felt. And I remember not really caring that much.

I don’t know when the eat, insulin, nap started with the binging but I imagine it was somewhere around my junior year of college. This was the time when I put on the most weight. This was the time I broke 200lbs and went far beyond. This was the time I struggled in a long distance, slightly abusive relationship and sought food for comfort. This was the time when food seemed to be my only friend.

After that dark place I found the DOC. I started taking care of myself and low and behold I felt so much better. More energy. Less anger. Less low blood sugar. Less scary.

I am happy with where I currently am in my diabetes management, though I wish things were a little bit cheaper, and I’m not sure I’d like my a1c if I took it today. But the weight sticks around, a shameful reminder of a time gone by, and an excuse to return to old habits when life gets hard. I did manage to lose 30 lbs toward the end of 2012. My a1c at the time was over 10. I’m not sure how much of that weight loss was me actually trying or was the high blood sugars. (I can’t believe I’m admitting this on the internet). Nevertheless, it’s all back now.

It’s difficult. I’m working on being overall in a healthy mindset, taking care of diabetes and making healthy food choices and making sure I exercise and eating low-carb because I’ve seen the difference it makes in my Dexcom graph. It isn’t easy. In fact, it’s damn hard. All of it. Eating healthy, actually COOKING things? I hate cooking. Dragging my butt to the gym or convincing myself to go outside for a run? When I feel like I do today, not so easy. Low carb? Might be easy, were it not for my massive sweet tooth. Cigarettes? Diet soda? I know these things are bad for me, but they are my vices, especially in times of stress.

I have learned, especially in the last two years, that the best thing to do is to take things one day at a time, one meal at a time, one decision at a time. If you make a decision that isn’t ideal, all it means is that is the decision that you made at that point in time. It doesn’t mean, by any means, that you have to make another less than ideal decision later. I can do it. You can do it. Together we can help each other do it. One step at a time.

No Big Deal.

This post is part of D-Blog day 2012 .

 Every November, for four years now, I have participated in Diabetes Awareness Month. Similar to the ever-popular Breast Cancer Awareness that October celebrates (about which I continue to have mixed feelings), it is a month dedicated to raising awareness and support for people living with diabetes and organizations searching to find better treatments or a cure.

This year I’ve been reflecting on how those around me view my diabetes. I talk about it a lot, probably more than a majority of people living with “the D” do. Most people around me are aware that I live with Type 1 diabetes. My coworkers, members of my Weight Watchers meetings, those who I attend church with, and even sometimes people in my classes are all aware that I have diabetes. I make a point to inform my supervisors and teachers that I do, in fact, live with diabetes, use an insulin pump (and a CGMS when I have it). The reasoning behind this is simple: in any medical emergency when it may be pertinent that the medical staff knows I have diabetes, these people would be able to inform them of this. It also, more times than not, comes out on a first date. Whether discussing “baggage” we would bring to the potential relationship, or discussing what I want to be when I “grow up” (a diabetes educator), it slips out somehow.

During each of these times, I take a few seconds to explain that I have type 1, use insulin, and have had it for years. After that, I usually blow it off. “It’s no big deal; I’ve got it under control.” “I’ve been doing it for fourteen years; I have a handle on it by now.” I have used both of these sentences a lot when it comes to telling supervisors, teachers, and even dates about diabetes.

“It’s no big deal.”

I say it so often I’ve convinced myself. It’s really no big deal. You don’t need to pay attention to it, because it’s no big deal.

It’s a big fat freaking lie.

It’s a huge deal. It affects every aspect of my life. It affects my day to day activities, my mood, my attitude, and my body. Losing weight is hard anyway, but it’s harder with diabetes. Blood sugar too low? Can’t work out. Blood sugar really low? Consume more calories. Blood sugar too high? Can’t work out! It’s a vicious cycle, and it makes life incredibly difficult. You have to get into a distinct pattern to trick your body into knowing that you will work out at that time each day, and adjust your insulin just so.

It’s a lot of work.

Not to mention every bit of food affects your numbers differently. Oatmeal and cold cereal. Similar enough to a person without diabetes. It’s cereal. (Super Cereal). But to me, it’s a different effect on my blood sugar. To me, I see numbers, not food. I see a syringe or a dial on a pump. I see a meter reading. I don’t see food.

And then there’s the hormone factor. Women, we get the worst of it. And while I may be well past puberty, a monthly cycle is nothing to shrug off when it comes to blood sugars. Crazy stuff happens, no matter what time of the month it is (sorry boys, facts are hard but true).

Then there are the consequences of the high blood sugar readings. I don’t even want to get into the potential complications. Kidney damage. Eye damage. Heart attacks. Loss of feeling in extremities. Luckily I’ve dealt with a very small amount of this after 14 years, but it seems, no matter how hard I work at taking care of myself, there they are, looming.

It’s enough to make you want to quit trying.

But we tell people what we want to believe. We want them to know we’ve got this, that we can do this. But usually, it takes constant self reminders, and often times, reminders outside myself, from my family, my friends, and my online support system, that I can do this. That we can do this, together. Life with diabetes doesn’t have to be a life filled with hardship. Yes, we are forced to learn dedication and hard work and constant defeat, but we can still live long, healthy lives.

Isn’t that the ultimate goal? Even if your life doesn’t end up at the average age of a person without diabetes, to live it full, to have everything everyone else can have? To eat our cake on our birthdays and diagnosis anniversaries, to find love, get married, and have children if we so choose, or to do none of these things if we choose not to!

Diabetes isn’t a death sentence. It is a life sentence, but it can be good. People with diabetes can live extremely healthy, active lives. And while the work it requires can become overwhelming, it also can be rewarding. Friendships and opportunities that I’ve made and had because I have diabetes and because I blog about it are things that I will cherish forever.

Worth it? Maybe not. If we had a choice, none of us would choose this life.

But those things make it infinitely better.

Once Upon a Christmas Night…..A Diabetes Tale

Peacefully asleep on Christmas night, I roll over in a routine manner for me. This time, I feel a tug in my stomach. My insulin pump has slipped out of the waistband in my pants and wrapped around my abdomen. 

Almost without waking up, my hand jumps to the area of the tug. I had intended to check to be sure it was still inserted, and my fingers feel an intact infusion set, but I wake up enough to realize my fingers were wet. Something isn’t right here. 

I wake up nearly fully now, and in the light of the TV I’d fallen asleep watching, I reach for my pump to check the time while ripping the infusion set from my body. 3:36 am. My TV is playing an infomercial. I ignore it. I realize that my head is pounding and my mouth is dry. I grab my monitor and stick the test strip in. I can’t find the lancing device. It’s buried somewhere in my purse. I come across an unused lancet. I pull the top off and attempt to stab my finger without the aid of the pokey-thingy. 

 

It takes two or three attempts, but finally I am able to jab the sharp needle into my finger. 5. 4. 3. 2. 1. Finally the screen shows 336. It casually crosses my mind that my blood sugar is the same as the time. I am ready to pass out and go back to sleep, but I know I must reinsert an infusion set into my skin. Another needle. 

I dig into the side table drawer where I keep my supplies. I’m out of cartridges. I get up from my bed and pull out another box from my “stash”. Infusion set. Insulin. What am I missing? Ah, alcohol wipe. I dig until I find a solitary one at the bottom of the drawer. I don’t know where I put the box, but at this point, I don’t care. I just want to finish this and get back to sleep. 

 

I rewind the pump while filling the cartridge. It doesn’t take as long and I stare at the pump while it finishes its business. After what feels like forever, I finish the process by shoving a needle under my skin and then taking it out, leaving a thin plastic cannula to deliver the insulin into my body. I bolus for the high blood sugar and turn off my light. 

But I can’t sleep. I keep thinking that I might be dehydrated, or have ketones, and that I should really get up and check them and drink some water. At this point, I’m fully awake. I check my ketones using a urine strip. This is more difficult than it sounds and typically messy. They are negative. I am relieved. I head to the kitchen and drink an entire 16 oz glass of water in about ten seconds. That’s how thirsty I feel. 

Once I make it back to my bed, I still can’t sleep. I get my computer out to blog my experience. Why do I choose to share this with others? I don’t want sympathy. I don’t need attention. I simply want to promote awareness and let you know…..

 

What It’s Like.

“Is it Winter or Something?” – Dealing with Diabetes Guilt

Finally caught up on my DOC reading, I have noticed a trend.

Negativity – and not in a hateful sort of way, but in an “I’m really frustrated with myself because I feel like I’m failing” kind of way.

While my first instinct would have been encouragement, I honestly can say right now that I don’t feel like I have any weight to encourage anyone, because I have to say I feel the same way.

My blood sugar monitoring has dropped to pre-DOC levels. Some days I don’t test at all. I could blame my “Other D” resurgence, I could blame my lack of continuous glucose monitor, or I could blame a genuine disheartening. But playing the blame game does absolutely nothing for my health or myself.

In some ways, the last few weeks have left me feeling better. I (dangerously, and would not encourage ANYONE to replicate my decision) discontinued use of my anti-depressant, which I suspected was giving me side-effect headaches. The headaches have declined but have not gone away completely. My depression symptoms have increased, but not much, which leads me to believe that the meds were not doing their job. One bonus is that I have been sleeping at night, although not through the whole night – I have been waking up almost every night between 3 and 5 am to blood sugars of 200 mg/dl or higher.

WTF?

Is it the weather? Is it the time change? I know that last year, this type of thing started around this time, but I blamed it on being alone most of the time since my roommate had just left, her internship tenure expiring. But this year I’m safely with my family, and have a lot of social interaction with friends. I am jobless again, which doesn’t help, but seriously. December is supposed to be a happy time, and I admit, Christmas traditions both old and new have been helping me cope, but sometimes it just isn’t enough.

Things get overwhelming quickly. I want to buy my loved ones gifts, but I am broke. Cleaning and organizing my things would make me feel better, but I can’t find the energy to do it. Staying at home, I’m experiencing blood sugar spikes almost every time I eat anything with a small amount of carbohydrates, I end up with a nap inducing blood sugar spike. I basically feel like I am in a fog.

So much of diabetes care has to come from within us.

To really feel as though we are living healthy, “normal” lives, much of our care depends on our determination and ability to continue to do the same things over and over again: count carbs, change the infusion set, bolus the insulin, test the blood sugar, let go of our hard-earned dollars to buy the precious medications that keep us alive. Check for ketones, and make the decision whether this episode of the flu warrants a trip to the emergency room or not. Burnout sneaks up on us like a grinch stealing Christmas. All we can do is all we can do. The trick is to not look at the numbers, not feel guilty for past mistakes. It can be hard. I am terrified of the day I realize my life is shortened because of my own mistakes. For the time when I am told I can’t have children because of my lack of control. When I lose the use of my feet or my hands lose feeling, and I lose the ability to play the piano or type a blog. When I lose my sight and can no longer drive a car, losing my personal freedom. When kidney failure causes my family to lose me. But these things are not things that should be dwelt on. Each day is a new day. The other day I posted this facebook status:

“Things seem ok when you take it one step at a time.” 

Test this meal. Count these carbs. Drag my butt to the gym today. Don’t worry about tomorrow. Forget about yesterday. One step at a time is the only way to live life with diabetes without bogging yourself down with guilt.

 And it’s the only way I want to live.

 

When you aren’t perfect, why try?

As much as I work to give myself a new philosophy, I always slide back into the lazy perfectionism. Can’t lose weight? Why try? Can’t resist the chocolate? Why not eat the whole bag? Miss one day at the gym? Why go back?

And for this reason, I ruin relationships, give up on dreams, fail classes, let blogs become unbelievably sick and near death, and let an 8.4 a1c turn in to what I predict will be the worst. A1c. Ever. which will be drawn for next month.

What is happening to me? Why do I let myself spiral down this way? What does it take to bring me back? This time there isn’t a Utah to run away to. The blog is no longer new and exciting. What motivation do I have to continue the good fight? And tell me why I’ve abandoned my twitter world, where I made some of my best friends, who were there to encourage me every step of the way?

What now? Continue trying knowing failure is my only option, knowing I’ll never get it right, or just quit and say forget about it, writing my life off as a mistake that sprung a leak of mistakes that would direct the course of the creek of my destiny?

…*pause while I take my Prozac*

Seriously. What is my DEAL?

Remembering that it’s just a number.

One thing has been running though my mind the past few months:

How did I get back here again?

I’ve been feeling out of sorts for a few months now. Tired all the time, hungry all the time, thirsty all the time. Sound familiar? So when my endo appointment snuck up on me, I wasn’t expecting anything phenomenal.

I went into the appointment post-vampires telling myself that A1c is only a number, a small snapshot, a reflection at one time of my overall health and it in no way reflects on me personally and should not affect my self-worth.

But what I wasn’t expecting was an 8.4.

I knew I’d been slipping and under a lot of stress lately. Overeating, not testing enough (especially sans-dexc0m), but jumping .8% was not what I expected. It turns out that my doctor’s appointment was exactly what I thought it would be, a wake-up call.

I’m starting symlin again, which will be a process and a half since I didn’t really use it at all when I was in Utah or since I have been home. I am thinking about waiting until the end of next week, since I have travel plans, but I am also really sick of feeling gross every time I eat a few grams of carbohydrates. It really takes it out of you, eating breakfast and then feeling like going back to bed because your blood sugar is now over 200.

8.4 isn’t going to get me down. I have done it before and I know what I need to do to get my blood glucose levels into a healthy range. It might mean figuring out how to pay the ungodly amount for full price dexcom sensors, or it might mean just testing my blood sugar 10-15 times a day. I have done both of those things before. The important part is that I know how to take care of myself, I know what works best for me, and I can get back to that place.

Because I can do this.

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.

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.