“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.

 

I’m going BIG this time.

Currently I’m taking Human Nutrition in preparation for nursing school. As part of the course, of course (see what I did there?), we are required to do a nutritional analysis. This means logging every bit of food and every minute of exercise to an online site where our teacher can access it and then analyzing our results.

We have to do it for 4-6 weeks. I’ve been doing it honestly for two weeks, and let me tell you I am not happy with what I see. I’ve also been toying with the idea of going gluten and dairy free and forgetting the red meat for a long time now. I’ve decided to implement these changes into my diet between now and Thanksgiving. The goal is to see how I feel, see if some of my issues clear up, and see if I lose any weight (with my slight insulin resistance, I’m not sure this will happen).

On top of that I’m attempting to work out one day on, two days off at the gym including weight lifting for the duration of the month (Thanksgiving is exactly 30 days from tomorrow. That’s crazy). I am pretty excited about this. After a shopping spree at the new Hy-Vee in Springfield (if you’re from the northern part of the Midwest you know about the wonders of Hy-Vee), I am set with gluten free essentials and a healthy amount of fruits and veges that I am hoping will get me though the next couple of weeks. It really is going to be a “detoxification” process, because I am pretty sure my body is addicted to processed sugar and artificial sweeter and caffeine. Not to mention salt, but the sodium question will not be addressed this time around. I’m resolving to only eat out once a week, so that means with my family birthdays upcoming I may have to skip out on some after church meals on Sunday.

Here are some things I jotted down during nutrition class this evening, things that are always on my mind but may be implemented in steps rather than all at once:

Food Plan:

Goal: 10 servings of fruits and veges a day (note: these are goals, not requirements). This is to implement more fiber in my diet.
Goal: no red meat, gluten, or dairy products except for greek yogurt for the protein content.
Goal: balance carbohydrates and protein
Goal: drink at least 64 oz of water a day.

Exercise Plan:

Goal: Start doing yoga again (for stress relief, because tonight my nutrition teacher said belly fat can develop as a result of stress! I didn’t know that!).
Goal: One day on, two days off regular exercise plan for a month.

Other Thoughts:

Limit diet coke intake (yeesh!)
Green Tea (yum and good for you)
Fish or tuna twice a week (tuna is fish, but it’s whatev)
try to eat a few carrots daily for eye health
Try to replace sweet tooth to crave fruits instead (this sentence doesn’t make sense, but you get the gist)
Monitor Blood sugar levels (duh)
eat at least 4 times a day, try to equal amounts (ie no big meals, just several small ones).

And finally, the logging that needs to go on for both my sake and my nutritional analysis:

• Food Intake
• Exercise
• Blood Sugar
• insulin intake
• water intake
• hours of sleep
• waste output (gross! But necessary)
• pedometer

I make plans like this c-o-n-s-t-a-n-t-l-y.

And I always sincerly hope that I will keep it up, but hopefully this time the added motivation of my required nutritional analysis (and being able to explain how much better I felt at the end of it, maybe I’ll get bonus points!) will keep me motivated. I mean, how much of it, besides food elimination, isn’t just healthy habits to have?

 

The Biggest Thing

The biggest thing that I am looking forward to maybe actually be able to stick with is the exercise. I have a gym membership, and even though two days off, one on may not be the recommended amount of exercise, it’s still a hell of a lot  more than I put in now, and the ultimate goal is to switch to five days of cardio and three days of weightlifting once I’m used to this less frequent plan.

Can you help me out?

I’m going to attempt to post on facebook and twitter regarding my progress, and of course, use my blog as November will be a big blogging month for me anyway. What I need is support and encouragement. If you have a success story, please tell me! I’m not trying so much to lose weight as to feel better and improve my overall health. What do you think? Too much at one time, or do you think I’m doing well? Do you have any suggestions?

Disclaimer: I am not a medical professional! My blog is not intended to be medical advice. I have a health care team that is supervising me in my undertakings. If you plan on drastically c hanging your diet, beginning an exercise routine, trying to lose weight, or undertaking any other kind of health-related lifestyle change, it’s important to consult a doctor before beginning. 

Awareness Month is Coming!

November, in case you weren’t aware, is diabetes awareness month. Here are some things I am participating in that you might want to participate in too:

 

• Blue Fridays – wear blue every Friday in November
• The Big Blue Test 
• National Blog Posting Month (nablopomo) 
• World Diabetes Day 

More info coming soon, but you can find a bunch of info on the linked sites above. I am so excited, I can’t wait! I have my blue finger nail polish and hair ribbon ready to go!

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?

What Was I Doing Right? The Quest for a Lower A1C

Today I was thinking about how closely I was monitoring my blood sugars back when my A1C was at 7.1. 7.1 is not necessarily my ultimate goal, but it was the best my A1C had been since pre-diagnosis and it was the result of lots of hard work and habits I have since dropped. So what was I doing differently then, and instead of asking myself what I’m doing wrong now, how can I re-implement the things I was doing right?

Exercise
Now, since high school, except when I was taking PE courses in college, exercise has never been a strict part of my routine. Call it laziness or lack of athleticism, it’s hard for me to get excited about moving for no apparent reason. However, when my A1C was at it’s best, I was making a concerted effort to exercise twice a week. Today’s recommendations suggest exercising 60 minutes most days, but even 20 minutes twice a week affected my blood sugar levels and other aspects of my health.

Glucose Monitoring
At this point in my diabetes life this should be a given. But honestly, without the aid of Dexcom, even testing 8 times a day leaves me feeling lost. But the thing is I’m honestly not even testing 8 times a day. Even with Dexcom I was testing at least 4 times a day to be sure that Dex was calibrated. Until Dexcom becomes a reality again, it’s time to start testing my blood sugar often.

Carb Counting
Guessing the amount of carbs I am eating on easy things to measure like cereal and potato chips should not be happening. It’s not fun to count every morsel that goes into my mouth, but it’s necessary for what I would consider acceptable blood sugar numbers.

Capping the Carbs
When I first got my pump, I was attempting to cap my daily dose around 100u. Now this is VERY IMPORTANT, I was in NO WAY limiting my insulin dose, just attempting to limit my carb intake to somewhere around 100-120 grams. I’d explain to you the math and my own personal insulin intake for how this works out, but I don’t think you actually care. Trust me on this one. The science behind this is simple. It’s like a drain. If one very dirty person takes a shower over the course of a week, the drain doesn’t get clogged. Now if 100 very dirty people take a shower at the same time, the drain might get clogged. Consequently, the more carbs I eat the harder my body has to work to “unclog” my blood of sugar particles. I’m by no means going low carb, but 100 is a limit I can live with and one that my blood sugar doesn’t so much mind, either.

Simple is better.
There are a lot of PWDs who stay away from high sugar fruits because of the after meal spikes it causes. Yet another piece of evidence that everyone’s body is different, I don’t typically spike as long as the fruit I’m eating is high in fiber, such as an apple. Keeping the carbs simpler seems to allow my body to process the sugar more quickly. In fact, if my blood sugar is below 100 I don’t even have to bolus for an apple! It’s like magic. (Again, everyone’s body is different so don’t try this at home, kids). Bottom line is, when I focus on simple carbs vs. complex carbs, I tend to have better readings with the simple ones.

And Finally…

Remember that it’s okay to not be perfect. Remember that failure isn’t in your diabetes vocabulary. Remember that you can do this.

 

And just keep swimming…

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.

Word Vomit, Diabetes Style

Oh oh...word vomit

Remember the movie “Mean Girls?” When Lindsey Lohan was still attractive and relatively innocent? In the movie, the voice over of Lindsey’s character Cady often references what she calls “word vomit”. Word vomit happens when you know you should stop talking, but you can’t.  You then involuntarily “vomit” the words out of your mouth just like actual vomit.

Lately, I’ve been put in “new” situations. I started a new job, met some new people, and just generally tried to create a new life for myself here in my home town. I find myself in situations where I have to describe my diabetes to people. And while I always try to keep it simple, their human nature always causes the word vomit to arrive.

And by this I mean, they ask questions. Usually, only a few. But I always overshare once the questions come. I’ve caught myself explaining what insulin does in the body, the difference between type 1 and type 2, why I can eat whatever I want, when and how I was diagnosed, and other things that I am sure these people didn’t mean to have me explain when they thought up these questions.

It’s not that I don’t want awareness, it’s just that I think that for most people, a simplified version of what type 1 is and how it’s different from type 2 should suffice, especially at work. I need them to know that I can’t go off insulin if I lose 50 lbs and that if I pass out they need to force feed me sugar or inject me with glucagon and call an ambulance. That’s where I feel like it should stop. Because one, I don’t really care about the ins and outs of other diseases, in general. I might get curious one day, for the sake of my future nursing/dietetics degree, but in general, I really am not all that interested. Maybe that’s evil, but it’s the truth.

Secondly, a lot of things about diabetes are very personal, and the last thing I want anyone to do is to stereotype all type 1 diabetics with the problems I have to deal with. For one, being overweight as a PWD is hard no matter which type you have, because people automatically assume you “did this to yourself.” Secondly, taking insulin makes it a little harder to lose weight. Between dealing with exercise lows, readjusting basals every 5 lbs, and the sheer way that insulin converts sugar to fat in your body makes things difficult. But that being said, that in no way means every type 1 diabetic is overweight. In fact, I am one of very few T1s I know who is overweight. But that’s generalizing again, and that’s what I’m trying to avoid.

The moral of the story is, what is good info for the sake of awareness and where do we draw the line? I don’t want people thinking diabetes is some enormous burden I have that makes it impossible to have a normal life, but I don’t want them to think it’s a cakewalk either. Where’s the middle ground?
What do you think about this issue?