No cyclist wants to be riding indoors. I think it’s safe for me to say that we’d all rather be outside enjoying the scenery. We like to know that we’re actually headed somewhere, that we’re actually covering some distance. Even in the extreme cold cyclists will dress warm and go out there and ride…even when it’s so cold that the water in their water bottles is freezing as they pedal along.

Riding indoors is the unideal situation. It’s a “I have no other choice so I’m going to do it” situation. It’s my current situation.

Because I’ve been unable to eat like a normal person I have no energy, no energy in me or in my energy stores…it’s abnormal, I’m typically the person that you can’t get to sit down and stay still for any amount of time. I’m also moving, always energetic. But that’s just not the case right now…

Because I have to go with the flow of things, moving my bike into the house is the best I can do to make sure I’m riding to some extent. I can’t ride long, I get worn out quickly, but I can at least ride. I went three weeks this year without riding because I was pissed that I couldn’t ride outside. I was pissed that smart friends pointed out that I didn’t have the energy (which I confirmed) and going for a ride would probably land me on some trail passed out where no one could easily get to me. I was so pissed that I moped around pissed instead of doing anything proactive.

So, this is me being proactive, again, it’s not ideal, but it’s what I can do…and it’s what I’m doing. It makes me sad that I was only able to ride 8 miles, but 8 miles is better than nothing…

As I’m snowshoeing along, I see prints…snowshoes prints, cross country ski prints, the occasional animal print. The snowshoe prints are the ones I pay most attention to. For some reason the size differences and distance between the prints catches my fancy.

The one thing I’ve noticed is that the prints are close together. The tail end of the shoe in many cases is very near to the other foots top of the shoe. There’s very little distance between the two.

Step. Step. Step.

Small steps, not large steps. The stride is greatly decreased. I know for me that the stride is decreased because it’s easier to snowshoe that way. When you’re somewhat sinking into the snow you don’t want too long a stride because it’s hard to lift up that foot that’s behind you and move it forward.

It’s also easier when a path has already been blazed for you by someone else. The snow is more packed and it’s easier to traverse. Plus, as a bonus, you generally know where you’re going. You can get on a path that’s already been made that’s heading in a general direction and say “yeah, I think this is going to end up over there” and end up at or near where you wanted to head. On occasion there will be a path where someone side tracked and it’s not a definitive path.

It’s kind of the same with diabetes. I know many people, and we’re all mostly on the same path, it’s well trodden. On occasion we’ll take detours and make our own paths but we generally end up on that well worn road. The path that we’re all in a way familiar with. Sometimes we slow down and take smaller steps as we ponder, this is how everyone does it but is it going to work for me.

Then there are times like now, when one of us, me, finds ourselves on a path that few or in some cases no one has been on. We’re the path makers. We travel slow not knowing what to expect, every now and then something will happen and our steps get larger only to realize that we can’t do what we thought we could and we back off. The path is narrow to start because we’re the only one that’s been on it. Someone else will come along and see the path, the narrow path and the small steps that were taken to create it.

Right now I’m blazing a path, but as I walk along with what the doctors are going to confirm as gastroparesis; people are coming out of the woodwork and letting me know that I’m not truly alone. I appreciate that. I like the fact that underneath my snowy path is their path, and the snow is starting to melt and I’m starting to see some light. I’m starting to hear from people and what they’ve been through. My path is starting to merge with their paths; and it’s kind of cool.

To flatline, in my opinion, is probably the coolest thing that can happen when it comes to diabetes and a constant glucose monitoring system (CGMS). For me it’s rare, as in, almost impossible rare. It’s quite a feat. The last time I flatlined…actually, I didn’t flatline, there was one stupid little blip in my flat line; I was playing with danger. I was low but I was consistently low so in an attempt to get a 3 hour flatline on my graph, I left it…I didn’t treat it or anything and I didn’t get a flat line either. I got a stupid blip that deviated from my flat line…

I digress. Back to the flatline. Impossible to get.

So when I see something on my graph that looks like it could be a flatline, I get all excited. This is what happened at 11:45 on Thursday night. I looked at my graph and saw a beautiful flat line…a whole 30 minutes of beautiful flatline. And I proceeded to get neurotic about it. Every so often I was looking at the graph, for well over an hour and a half to see that I was still at a flatline. It’s exciting you see, to see that line that says, “hey, your blood sugars, they’ve been steady for several hours now.” That’s exciting. So at 1:07am, I had completed three hours of flatlining. My blood sugar ranged from 106 to 114 and that in Medtronic Minimed CGM terms constituted a flatline.

I was very excited, it’s quite an accomplishment, rarely is it realistic (luckily it’s almost easy to have happen when you’re not eating and your bolus rates are in “perfect” condition and it’s late at night so there’s nothing stressful happening).

I don’t often test my blood using my arm and there’s a good reason for it…it leaves track marks…and they’re far worse than the ones on my fingers. The bruise and they take forever to go away. Lastly, like my fingers, it’s hit or miss as to whether they’ll bleed or not…which means there’s unnecessary wounding happening on my arm.

The first time I ever used my arm to test my blood I was in college. My fingers were damaged (nothing’s changed there) and I needed a new place to draw blood. It was about the time that the lancet devices were coming with the tip that allowed us to use our arms. So, I did just that, I used my arm. The marks began as a few but quickly multiplied, because I was anal about the marks on my arm they were in a straight line.

One day as I was taking a test, I had a professor come up to me and say “Ms. Benefiel, I need to see you in my office today during office hours.” I acknowledged the response and showed up for office hours. The professor addressed the marks on my arm: “Track marks aren’t typically something that you want to display to the public.” (As it was spring and I had been wearing short sleeve shirts.) I educated him on how what was on my arms weren’t track marks due to drug use and that they were due to me checking my blood since I had diabetes and my fingers needed a break.

That was also the last time that I used my arm as a lancing pad. That is, until recently. With all the blood checking that I’ve been doing for basal rates and trying to keep from going low while my food consumption is low I needed to move from my fingers (20 pricks a day to the fingers is intense when you only have 6 finger or 12 sides of the fingers to use).

I got adventurous the other night and decided to use my arm. I’ve got spots galore from one night and a morning of testing. Many of them bruised. I have one spot on my right arm where it actually grew a decent sized bump and bruised. I was cool with it because it was giving my fingers relief and it’s winter so they’re covered up, but then I learned something…

The blood in your arm doesn’t match the blood in your fingers blood sugar wise. The arm checks that I was doing were consistently 20pts higher. I only discovered this because my CGM sensor failed calibration from a finger check so I checked my arm, and then several more fingers and then my other arm. When I asked a good friend about this she said “DUH! Your fingers are the most accurate place to check your blood. You can use your arm but not when you’re low.” And I added, and not when I’m high either. I rolled my eyes and went back to pricking my fingers.

October 11, 2007

A flickr mail showed up saying I had a new contact, it was someone I didn’t know…I follow through the links on their profile and I end up on the Diabetes 365 group page.

This is a group for diabetes-related pictures that you take as a 365-day project.

Basic rules: You must post a daily picture by the end of each week. Number each one consecutively and tag them with ‘diabetes365′.

Each daily photo should show some aspect of daily living with diabetes and help explain what it’s like to live with diabetes every day of the year.

Let’s try and show the world how Diabetes is something that we work at and live with all year round.

I thought to myself, I can do that, I can show the world what I live with all year round…(I have to be honest here, there are some day when I wished I hadn’t thought that because I’d much rather that my diabetes stayed invisible.) And so, I began project diabetes 365 or D365 as some of us call it. And because I had some pictures that I had been taking, my first day of Diabetes365 began on October 6th 2007 with my pump being drowned in sweat.

February 09, 2008

I made it 4 months before the images stopped getting posted here on my website. Day 127 saw my dog chewing on my tubing and that was the day that RideToRemedy saw project Diabetes365.

I did however continue to take pictures, although uploading them and labeling them came in unevenly spaced out spurts. I took 278 photos in that first year, I was so close and yet so far from completing a year worth of showing the world what diabetes in my life looked like.

Many people began the project, few people finished, among the finishers, Kerri of SixUntilMe, Sarah at Moments Of Wonderful, and Kathryn, Aubrey, and Liz (if there were others I’m really not aware of them).

New people are just starting the project. People familiar with the project have picked up where they left off in attempts to finish it, and me, I’ve started over.

January 2, 2009

I sat down to write down my goals for the year, among them: I want to restart and finish the diabetes365 photo a day project. The night before, I had taken my first photo of the 2009 year.

February 1, 2009

A first month review of my goals for the year showed that I had made it through January with a photo posted for every day.

March 1, 2009

A second month review of my goals showed that I had made it through February with a photo posted for every day.

Present Day

There was a fair amount that came out of this project when I started it last year, there was bonding in the diabetes community that I really don’t seek anywhere else (among many others, the big name sites include Diabetes Daily, Tu Diabetes, and DiabetesFriends). I could see other people’s pictures and what was going on in their lives with diabetes, and the project as a whole was touching other people’s lives.

It’s died in a way, there’s not nearly as many active participants, not nearly as many people viewing and commenting on the photos. The community about it has been lost (in my opinion of course).

This is my call, to all the viewers that read RideToRemedy that have diabetes to get involved in the diabetes365 project. It’s a fun project. It’s enjoyable. No matter what type of diabetes you have, you can share it with the world. If you’re a reader that started the project and had to stop for whatever reason, I urge you to pick up where you left off, you’re missed. Just because you didn’t finish in a year doesn’t mean that you can’t finish, and it doesn’t mean that you have to start over to finish. And to the ones that haven’t begun, if you haven’t begun because you think you can’t do a picture a day, I dare you to try…sure, at some point, you may drop off, what’s important is that you pick up and start again

Just for fun, I’ll throw out the theme I’m working on this week, it’s feelings. How do I feel about diabetes, how does diabetes make me feel.

Last night, I photographed and wrote about how I feel that diabetes oftentimes overshadows my life.

It’s fun, sometimes taking the pictures is a rather exciting project. But I’ll admit, sometimes getting a picture taken for a day can feel burdensome, but you just have to push through it, great things can come from it

This is Princess Paisley, the newest addition to our household, we’ve had her for almost 2 weeks now and she is quite the busy body.

Today I was taking pictures of her playing with her toys and she comes over to me and grabs my tubing for my pump, having had the camera in my hand, I took a picture before reprimanding her.

I’ve had cats shred the tubing, but I’ve never had a dog worry about, guess I gotta keep an eye on my pump when she’s roaming around.

A few years back when I started having seizures I was forbidden to have a bedside table any longer because it was a hazard to my head should I have a seizure.

For many years I’ve had my machine and juice and glucose tabs on my desk across the room from my bed and in the middle of the night if I woke up feeling low I had to get up and get to my desk.

I recently moved my bed to next to the window seat so that I could put my machine and the supplies to treat my blood sugars near to me so that I didn’t have to worry about getting up and getting to my desk.

It also makes it so that the danger of a bedside table doesn’t exist.

5th grade was probably the last time there was an exchange of candy was made at school. That was the first year that I had had diabetes during this special holiday and so the candy went home to mom, and I probably never saw it again, I don’t remember.

But this bag of valentines candy comes to me and I tell you what, I was excited. I had been telling my friend Alli that I needed chocolate for well over a week now, and she sent me this (among some other cool stuff and great words in a card).

There was more chocolate before the picture was taken, but as I said, I needed it!

I was cleaning up (read: organizing) my diabetes cupboard and I saw the box of syringes, I was bored enough that I decided to line them up and take a picture.

There were 60 of them, which used to be a month worth of basal rate if you will (14 units of levimir in the morning, and 16 at night).

There is no cure for diabetes…

Yet!

When I saw the snow on the stop sign, it made me think about how the signs of my blood sugars aren’t so clear.

Of all the signs that accompany my blood sugars, the sign of a low are the ones that I have the most trouble with. After my blood sugars being so out of control for so long and often having too many lows, I had become immune to the signs of a low, and now they are slowly coming back, but they’re not always clear.

There is no cure for diabetes…

Yet!