When January rolled around and I had a choice to start up the Diabetes 365 project again I took a few moments to reflect on why I failed the past 2 years. Failed as in, I didn’t ever get all 365 taken and posted in either 2007/2008 or 2009…

In 2007/2008 I got further than I did in 2009…maybe because it was when the project started and there were a lot of people doing it and there was a community around it…who knows…that first year I took 278 pictures…

In 2009, I started over with the Diabetes 365 Project…I took 148 pictures…many of them got posted to my Flickr account but never made it into the D365 group…

Between the two years I took 426 pictures…

Upon reflecting on doing the project twice, this is what I discovered:

Diabetes is an invisible disease (I actually already knew that, that’s not new news)…it’s invisible because many of us don’t put it out there…I myself go back and forth between putting it out there and keeping it hidden. When I started the project in 2007, it was to find my voice. I wanted people to know what I was going through because people just don’t understand the day to day in and outs of diabetes. I knew people for years and they had no clue that I had diabetes because I never checked my blood or took shots in front of them…it was well hidden.

They say a picture is worth a thousand words but throughout this project, I discovered that only so many pictures are worth a thousand words…many other pictures have to be expounded on. I can only take so many pictures of bleeding fingers, blood glucose numbers, syringes, pump sites, general diabetes waste before the ability for a picture to tell a story and make the disease visible is lost…

Last year I started a series that was absolutely awesome, they were self portraits but it was the words that really told the story of diabetes in various aspects of my life and my behaviors towards diabetes. The pictures were just a beautiful accompanying illustration and without the words you couldn’t tell that they had anything to do with diabetes…

It made me realize that a person who sees pictures of us taking care of our diabetes isn’t going to help them understand what we’re going though. It’s what we have to say about it. My mom has seen me take care of my diabetes for 17 years now and she still doesn’t get. She doesn’t get it until I explain it; and even then, only time will tell whether or not she really truly gets it. I can tell friends or show them what my blood sugar is when we’re getting ready to eat, but to them it’s just a number until I explain it.

So, 2010 came around and I thought I’d give this a go once again, I figure one of these years I might actually get 365 pictures taken. The first month has past and I’ve taken a moment to reflect on it:

31 pictures were taken.

28 actually made it to the Diabetes 365 group. Those same 28 had an accompanying commentary to go with them.

6 actually scream DIABETES (to some extent)…1 more maybe kind of can look like it’s diabetes related but I think it looks more drug related…it could just be personal experience…

4 are food related.

6 are nature-y.

3 are sporty.

1 is really awesome…I mean, how many people can say that they have pictures of their pancreas? For some reason having an ultrasound picture of my pancreas has really excited me.

The rest are…I’m not sure what they are…They’re something…you have to read them to really understand what they have to do with diabetes…

I can remember at some point in the very beginning of January thinking: how do all the people that take a picture a day do it…especially the ones that have done it for several years (like my friend Drew from BenSpark.com). Within a day or so of my mental pondering Drew caught my brain wave and answered my question of how he (as a person who takes a photo a day) takes a photo a day. He never runs out of things to take photos of and he never gets bored of taking a photo a day.

After reading that, it dawned on me, my problem isn’t taking a photo a day. Taking the photo isn’t why the last two times I failed to complete 365 pictures in a year…the problem is trying to explain what that photo means in terms of diabetes when there’s not a photo to take that says “hey, this is diabetes related”. I always have my camera, I’ll pull my car over and take pictures, I’ll hunt out the perfect spot for a perfect view. I’ll see a photo opportunity and immediately think about how it relates to something in my life that is diabetes related. It’s putting those thoughts to the blog that are my problem…because diabetes is complicated and convoluted and sometimes it’s just plain hard to explain…picture or no picture…

So here we are in another month…I’m not making a commitment to another month of pictures because as described on January 1 with my New Years Revelation doing so will automatically put me in line for impending failure…but I do have a lot to write about…if I can get the words out of my brain and onto virtual paper.

It used to be that life was simple and my taxes were done in a heart beat by filling out the 1040ez. Then I graduated from college and started paying back student loans and I also graduated in my tax form to the plain ole 1040 (which has far more on it than I need).

This year I thought that I’d look at graduating to a higher level, itemizing my deductions. I figured that with the change from uber sweet medical insurance to uber horrible medical insurance I’d easily be able to throw my medical expenses into my deductions. It wasn’t easy. I couldn’t come close to even making it easy because I didn’t meet the “medical expenses being 7.5% of my Adjusted Gross Income (AGI)” rule. And then, to make matters worse, it was pointed out that we can only deduct the expenses that were over 7.5% of our AGI.

This is where I take a moment to vent.

I shouldn’t be paying several grand a year to sustain my life medically; and that’s several grand a year after they take a couple grand out of my paycheck as my insurance premium.

If I’m going to have to pay several grand a year to sustain my life medically, the deduction shouldn’t be based on my income. I understand that this was designed to keep people (upper class citizens) from using deductions to decrease the amount of income tax owed, but seriously, it’s injuring some of us (like us middle class citizens). At a minimum, if the deduction is going to be based on income there should be an exception for people with chronic diseases; because, just in case you weren’t aware, rich people are not the only people that have chronic diseases…People with chronic diseases like…oh, I don’t know, diabetes…should be able to deduct all their medical costs…

I’m done venting now.

On a good note:

I did my taxes via the TurboTax website as I’ve been doing the past 6 years. Yesterday morning I went to log in and I got a message about how I couldn’t log in because of a disconnect in the servers. I tweeted it and the TurboTax twitter people sent me a message and told me to DM them the details. I was impressed, that is awesome customer service. They saw a problem and they responded and they were nice. I was already a loyal customer of TurboTax before they tweeted me, but that definitely put a smile on my face and made me happy to know that if I ever had a problem with their product that I would be helped.

Yesterday before I ate my radioactive eggs and toast I got pictures taken from one kidney to the other…I was ultrasounded for an hour. A total of 83 pictures were taken.

The main goal was to see anything in my stomach and to make sure that my gallbladder was normal. I of course failed to ask any questions about my stomach, gallbladder or whatever look they got at my intestines. I figured that if something was horribly out of place that they might GASP!

They didn’t ever GASP!

But I did hear things like “wow” and “you’ve got beautiful anatomy”.

When they said I have beautiful anatomy I knew that my organs looked great. They’re in there all perfectly organized and perfectly sized and perfectly located and that lends to beautiful anatomy. At least, that’s my thought; and that thought put a big smile on my face.

I know the spots where they pushed extra hard, maneuvered the probe (the transducer probe makes the sound waves and receives the echoes) this way and that way to get a better view, had me hold my breath to make the organs “pop”; but at the end, the stomach wasn’t on my high list of priorities.

I asked for a picture of my pancreas and the tech said “I send people home with pictures of babies all the time, I see no problem in sending you home with a picture of your pancreas.” That put a big smile on my face.

My pancreas looks like many things. The first thing that popped into my head was a sperm. Next was a snake. A friend said a salamander. I liked the idea of having a legless salamander in me, so my pancreas is now a legless salamander named Gaston (Gaston fit him perfectly because it’s like in Beauty and the Beast were Gaston is beautiful but he’s a bad man; my pancreas is beautiful but he’s bad and doesn’t do his job.)

If you’re thinkin’ I’m crazy that’s okay. Throwing a little imagination into the doldrums of life makes it more interesting…Just the other day I wasn’t even thinking about a legless salamander of a pancreas named Gaston living in me, it was a slimy featherless angry green chicken that I was thinking of. *smiles*

Their glow was egglishly yellow. The tech had salted and peppered the eggs for me and the toast was buttered. I was given a little bit of water. I had 5 minutes to eat my “breakfast” before I had to go lay on the table and watch the food move from my stomach to my small intestine.

It was a good experience. I didn’t know what to expect exactly other than I got to eat radioactive eggs and toast and if I was lucky I might walk away glowing and have superpowers that I didn’t enter the building with. Sadly I didn’t get either. Alan, the tech, he did tell me that under the right conditions I might glow, but that there was probably more radioactivity in his watch than there was in my eggs. I didn’t ask what the right conditions were in order to see myself glow.

So, I ate my eggs and toast, took a moment to take a picture, and then I got to go lay on the thing…the table…So I lay on the table and Alan put a blanket over me since it’s always so cold in the xray rooms and he tucked it under my sides. Then he slide the table under the machine and lowered the machine. I imagine that it was like a sunning bed with my head sticking out.

For 90 minutes I got to watch the radioactivity in my gut. I could tell the shape of my stomach and it started to thin out and you could tell when the eggs were moving to my small intestine because the radioactive dots moved down below my stomach. It was cool.

While I was laying on the table watching the radioactive particles move I got to listen to Enders Game (I had no clue that xm radio had a story channel).

It was fun. I had fun just laying there on a table, LOL. Who would’ve thought. I will admit that at one point I did freak out a little. I’m not normally claustrophobic but I decided to see just how close the lid of the machine was to me and it was close and I panicked. But it wasn’t anything that a little time with God couldn’t fix.

So, when my 90 minutes was up, Alan showed me the video. They take video from my frontside and my backside. Alan said that they’d merge the videos together, come up with a mean (of some kind, I don’t exactly remember) and it would be analyzed by a radiologist and the information would be sent to my doctor. I told him, “sweet” and thanked him for his time and went on my way.

I didn’t ask if it looked like the eggs digested in a normal fashion or anything. I did make a comment about how my stomach wasn’t empty and he said I’d be on that table for 4 hours if we waited for it to completely empty.

Whatever the results are, whatever they tell us about my stomach issues, it was cool to watch. Plus, how many people do you know that have eaten radioactive eggs?

Tomorrow is the first of several doctor appointments where we find out what is in my belly.

A brief discussion earlier revealed that it’s most likely an alien chicken that’s been fermenting in my stomach for the past 8 weeks. He’s most likely green and slimy, his feathers have been eaten away by the acid in my stomach…His eyes are bloodshot. Lastly he’s angry. You’d be angry too if something swallowed you and you didn’t digest…kind of like Boba Fett in the belly of the Sarlacc. I digress, my brain gets away from me sometimes.

So, the first appointment to find out what’s up with my stomach is tomorrow. We’re going to see a couple things…we’re going to ultrasound my gallbladder first and make sure that it looks like a normal gallbladder…whatever that means…no stones in it I guess would be normal…

Then! The exciting part comes. I get to eat radioactive eggs and toast and then lay on a table and we’re going to xray my stomach and make a video of it digesting the food. I’m really excited about that…so excited in fact that the video may make it to this website!

This is step 1-2 in figuring out why within a couple hours of eating a meal my stomach looks like I’m 3 months pregnant (I was joking with a friend, it took her 3 months to look pregnant and it takes me 1 meal). This is the initial steps in discovering why my stomach hurts so bad after eating, why I’m rarely hungry…all kinds of whys…

It’s quite exciting!

And, in case you’re wonder, if we do find a chicken in my belly, this is what it will look like:

Picture By Cecil Bienfang

In order to better control gastroparesis, one must better control their blood sugars. Or so I’m told, and it makes complete sense, since the out of control blood sugars were a leading cause in me getting my stomach issues. Lucky for me, I’ve got people in places to help me out. Not that I always like what they have to say, but I try.

For the past week I’ve been on what we like to refer to as the Carnation Instant Breakfast diet. I should mention that I began the diet by deviating from the instructions because I couldn’t get what I was told to get. So I modified the diet…that’s what we do with diets right, modify them to make us happy

So, what I was told by my non doctor was:

The key is to get blood sugars down with a liquid diet – nothing but Carnation Sugar free breakfast mixed with skim milk per instruction. Six packets a day. Aim to do it for 2 weeks. Basal and bolus rates need to be right, but that should be pretty easy to figure out with careful monitoring on nothing but liquids.

Easy right?

Haha…not so easy…liquids don’t appeal to me, the same liquids all day don’t appeal to me, so after one day on this diet…I deviated and added a meal a day. Lunch every day. Because food, it makes me happy, and not having it makes me sad.

The really sad thing though is that the one day I did successfully make it through the day with no food my blood sugars were so happy. Then when I started eating again, it made my blood sugars unhappy.

I need happy blood sugars, but there has to be an easier way to achieve than by a liquid diet…on the other hand, if I want to get better then at some point, I’m gonna have to stick to this diet for 2 weeks…it’ll be long enough to figure out what’s up with my stomach and go from there…

So, I pose a question to you:

Are you on a diet, have you ever been on a diet, and have you ever been able to stick to whatever diet you tried? What was the secret to sticking to the diet?

You know when you’re sitting somewhere doing something and all of the sudden you get a craving? That’s been me. I crave food…mostly because I’m not eating a whole lot these days. But they question always arises when I say I’m craving something: “are you hungry?”

This time, the craving was for Golden Grahams. I can’t remember the last time I had Golden Grahams. I can barely remember the last time I had cereal. (I think it may have been October.) I texted a friend my need for Golden Grahams and the question came “are you hungry?”. My response was: I don’t know if I’m hungry. My stomach hurts but I don’t know if it’s regular pain or hunger pain.

I followed up that conversation with a trip to Walmart to get me some Golden Grahams and as I was heading towards the cereal aisle thoughts started flooding my head. I want pickles and bacon and peanut butter jelly sammich and spaghetti and meatballs…and then it hit me, I’M HUNGRY! Those are the thoughts that hungry people have. Hungry people that go to a grocery store and want everything in sight.

I fed my hunger and my craving with Golden Grahams. It was sooooooooooo good. The blood sugars didn’t like them, but boy, I sure did.

The snow was falling and at one point there was a beautiful layer on the ground, but the winds picked up and ruined the layer of snow. They swept it this way and that way. Building up spots and destroying others. Leaving vacancies and voids in it’s wake. You could see the shadow of the wind as it picked up the snow. It was like a black gas sweeping over the area, this way and that way. It made me think about how even the best laid plans can be ruined by something unexpected.

I had great plans when I started this year, seeing my doctor every six weeks to help me stay on track with my numbers. What I didn’t expect was severe stomach issues that were going to hinder the digestion of my food that would in turn have a bad effect on my blood sugars that would inevitably push me into push me into ruin because when the going gets tough with diabetes, I have a tendency to cop an attitude (a massive attitude) and throw in the towel.

Once I throw in the towel, whatever was happening has come to ruins. The unexpected puts holes in my (im)perfect little world, it moves things out of place, problems build up and we no longer have a pretty picture…we have…holey snow…batman…

But there’s always that one piece of coolness that accompanies ruin, like the black shadow of the wind…the one cool thing right now with my stomach is looking forward to radioactive eggs, the hope of glowing, the possibility of super powers…

So much of life is unclear, we cannot see start to finish. But then, if we could see start to finish would we want to go through life that way. Would we want to know everything that was going to happen and walk through it like drones. I don’t think so, even God didn’t want us to walk through life as drones. That’s why He gave us choice. We don’t always know where we’re headed in the long run, but one thing is clear, and that is the present.

When we look at life at a higher level we can also see life at a lower level. The unclearness of life trickles down so much lower, into the everyday things we experience.

Diabetes is unclear. I’ve got the clear, more like a clearing, a heading, a direction I need to be pursuing. Tight diabetes control. It is clear that I need that. What is unclear is how I get there. I’ve got an outline, a general heading, I have a general idea of where the obstacles are, but I can’t see through to the end. I can only see what I’m closest to…the here, the now, the present. This moment.

I have a hard time living in the moment. I’m a forward thinker. I’m always thinking of the next thing. Okay, not always, I have my moments of spontaneity. But mostly, I’m thinking forward. I think the worst place I do this is with the D. With the exception of my anger and frustration, I’m not in the moment with it. I see a high and I think about how it’s gonna affect my A1c. I see a low and think about how it’s gonna affect whatever I wanted to do. The future is unclear, and it’s unclear because of the present. We can’t predict and control what’s going to happen in the future, we can only control what’s happening now.

I know that I need to clear my vision and focus on what’s happening right now…and, it’s a hard task to do that, but it’s what I have to do or everything is always going to be unclear.

Sometimes we have to let loose and do the unexpected. It makes life more interesting and sometimes more fun.

We’ve grown up in a manner that we’re set in our ways. We’ve done things throughout our lives that establish patterns and so there is always something “expected” of us. If we deviate, it sometimes throws things into chaos and other times, the unexpected can make things so much better.

The unexpected happened when I was babysitting my friend’s three boys. They came home from school and immediately disappeared to the backyard. They so quickly disappeared that I was like “where’s the boys”. Within a few minutes they came tromping into the house for a snack. Their jeans were covered in mud but they had the biggest smiles on their faces. When they went back outside they asked me to watch them. They took their tonka trucks up the hill in their back yard, planted their butts in the bed of the truck and came flying down the hill. They’d put their feet out to stop themselves before reaching the wall. Sometimes they’d launch from the truck when they hit the wall and fly a little before hitting the ground.

Then they asked me to join them. I looked at them with a raised eyebrow and the excuses started “I’m too big for the truck…I can’t sit in it”. Then the memories rolled in. Several years ago when the middle child was little and the youngest wasn’t born yet we used to go down the hill in the wagon. The only difference was that back then there wasn’t a wall that we could fall off of.

I eventually grabbed a truck and started heading up the hill. When I got up there and sat on the truck I said “what the heck” and quickly laid on it with my belly knowing full well that if I didn’t stop before I got to the wall I was gonna get royally jacked.

The boys and I must’ve spent 2-3 hours outside with those dump trucks going up and down the hill. It was a blast. There was some bruising and some scrapes but no one was complaining or whining. Doing the unexpected was awesome.

You’re probably wondering…how does this related to diabetes…that was almost a hard question to answer, but then it came to me… it’s not so much about us people with diabetes doing the unexpected (I mean, sure we can, we can do something our doctor didn’t tell us to do and shock them when we show up for our next appointment, like logging our numbers) but I think there’s greater room for the people in our lives to do the unexpected.

For example:

We expect that if we have dessert you’ll ask “should you be eating that”. Do the unexpected by sitting down and having some dessert with us.

We expect you to think that diabetes can be managed by a book…the same method for everyone. Do the unexpected by not telling how to do something but asking us how we handle that situation.

We expect you to get concerned when we slack off from our care…Do the unexpected by not expressing that concern and realizing that every now and then, a little vacation can go a long way.

We expect that you are most likely confused about the differences between type 1 and type 2 diabetes (as media breeds this confusion). Do the unexpected and either ask us a question about something you heard or do a little extra digging and find out if what you heard relates to the type of diabetes we have before you go rambling about something like…oh I dunno, the most common one “diet and exercise can help get you off your medications”.

If you’re a person that doesn’t have diabetes but you know someone that does, there’s a lot of little unexpected things that you could be doing that could really put a smile on a that person with diabetes in your life face