Back in the day.

Every once in a while I think back to the initial days before and just after my diagnosis. Dr. Mowry correctly diagnosed me with Type 1 diabetes at the end of January, 1991. After a few days in the hospital and some quick diabetes education, I was off to handle this chronic condition on my own. This recent post made me think about that diagnosis, and mostly, about my first few years living with Type 1.

One of the first things I remember thinking about diabetes was, after they gave me my dosing instructions (something like 26 units of Novolin 70/30 insulin in the morning, 22 at night), doing the quick math to determine I was going to be injecting myself 730 times every year, and 732 during leap years. That was my wake-up call… that was the first moment I knew for sure that this was different.

The diabetes educator I met with in the hospital was the first and last diabetes educator I’ve ever met with. No real reason for that, other than no one else ever said to me, “You should go see a CDE”. So I never did.

I remember getting the “five years to a cure” pep talk while I was in the hospital. I didn’t believe it. I remember giving others (mostly my Mom and the rest of the family) this tidbit of information in a sort of sound bite fashion, mostly so they didn’t worry, and so I didn’t get their pity. I still don’t know just how to handle that from people. But deep down, I knew from the beginning that my diabetes wasn’t going away. Nobody was going to be able to repair my broken pancreas.

I did read a lot about diabetes early on, to find out as much as I could about the disease. But I didn’t really know where to look for the latest about treatments, technology, and research. So, when I learned everything I thought I could learn about diabetes in general, I stopped reading. I might have picked up a JDRF or ADA publication from time to time in my doctor’s office. But how much of that can you read while you’re waiting? And when I was newly diagnosed, it didn’t occur to me to get any of that information at home. Besides, it all seemed so clinical back then. Eat right, exercise, take your insulin. Rinse, repeat. After I read that so many times, I just mentally turned it off.

I was going through a very stressful time at my job in those first few years. In a way, this was both a blessing and a curse. A blessing in that being so involved with work (about 60 hours per week), I didn’t have time to be angry or feel sorry for myself. I just had to move from task to task… that’s all I had time for. And therein lies the curse: Diabetes took a back seat from day one. If I was alive, I thought I was doing fine. Until my next A1c result. After the result came in, I’d feel bad for a couple of days, and then it would be forgotten until the next trip to the doctor.

Making so much time for the non-diabetes part of my life also meant that I wasn’t taking time to get up to date on drugs and therapy. I started my D-education in the hospital at diagnosis, but I didn’t get a follow up on anything for another 11 years. So, eleven years after diagnosis (2002), I was still injecting the same insulin at the same time every day, in the same amount. Regardless of my diet or level of exercise, never anything different. I knew that exercise could lower my glucose, and too much food could raise it, but it never occurred to me to make adjustments to my insulin dosage as a result of either of those. No one ever told me I could or should do that. And I couldn’t understand why my A1c was always crappy. How crazy is that?

I think I really could have used a mentor at that point in my life. I’m not sure how I would have received that mythical person then, but obviously, I know now how important a mentor can be as an educator, a cheerleader, a sounding board, and someone to help talk you off the ledge when times are tough.

Every time I think about it, I’m really blown away at my utter lack of diabetes knowledge in the first decade-plus of my journey with this condition. If you’re newly diagnosed, I hope you find that mentor. I hope you stay as up-to-date as possible on the latest medicine, therapy, technology, and research. Don’t forget that compared to your day of diagnosis, you’re pretty healthy right now, and you probably feel a lot better too. Don’t ever give up. Don’t ever stop learning. If this old dog can learn new tricks 23 years after diagnosis, I know you can too.

Don’t forget to pay it forward. Someone out there is right where you were in those first few days or weeks or years. Help make their first few steps sturdier, easier, more sure. JDRF has a mentor program that will allow you to help newly diagnosed PWDs feel less alone. Of course, when you need help, don’t forget to reach out to someone who can help you navigate stubborn BGs and difficult emotions. We all need help from time to time. In the meantime, remember to enjoy the vibrant, fulfilling life you were always meant to live, even if diabetes won’t go away. You deserve it.
 
 
 

Finally!

Last week I was extremely disappointed about missing out on a long-awaited ride on my bike. Saturday, I was finally, thankfully, able to get out and ride for a while.

The sun warmed up everything nicely, and it was about 70 degrees when I set out. I got a semi-late start, owing to the fact that I had to double-check my bike again (it was the first time I’d climbed aboard in six months), and the fact that I wanted to be sure I’d be okay diabetes-wise.

So I stuffed a salty/sweet nut bar in my bag, and I made sure I had a full bottle of water with just a bit of Gatorade. The BG check prior to the ride showed 185 mg/dL. When doing something like this, a number like 185 is not a concern at all. In fact, it’s a good sign. I had no insulin on board. I set a temporary basal on my pump of 15 percent. That’s right, just 15 percent.

Actually getting to ride for an hour was huge for me, as it always is the first time I’m out. That’s because of many things. It feels good, of course. I’ve always been the kind of guy that enjoys the feeling of freedom you get from riding a two-wheeler (I felt the same when I rode a motorcycle). And the difference in training on the road versus being in the gym is pretty big too. You’re stressing your muscles in ways, particularly uphill, that can’t be replicated on a spin bike, even in a tough class. I climbed three short but difficult hills, with three corresponding steep downhills (which have scared me ever since a bad bike crash three years ago). I moved deftly around traffic when necessary, and managed to avoid some nasty potholes that exist now thanks to our recent difficult winter.

I think I covered 14 or 15 miles, and wound up with a finishing BG of 89 mg/dL. Having a nearly 100 point drop in an hour tells me, if I’ve been reading correctly, that I was exercising in the aerobic range for most or all of that hour. If my number was higher, it would be a good indication that I would have been in the anaerobic range for a while. Or that I was dehydrated. Or both.

Regardless of where I was and how hard I was exercising, I can’t tell you how thrilled I am that I got this in. My 62 mile/100 km ride happens in four weeks. I need to be on my bike as often as possible, and at the gym when it’s not possible, over the next three weeks. The good news is I’m making progress. The bad news is I’ve got a long way to go.
 
 
 

April DSMA Blog Carnival: Surviving Social Media Burnout.

The April DSMA Blog Carnival topic is an interesting one. As Karen says, “Just as we can have bouts of diabetes burnout, we might also have bouts of social media burnout.” So true, so true. Our question this month is:

What are some of the things we can do to prevent social media burnout?

Especially when we have months like this one, right? That New York Times story has had Twitter, Facebook, and blogs buzzing for two weeks. At moments like that, it’s easy to burn yourself out.

One of the things I find very interesting is the fact that no matter your age, or your background, or your prominence (or lack thereof) in the social media landscape, you will get burned out sometimes. I mean, it’s easy to get caught up in something, work hard to keep up on it, and then find out two weeks later you haven’t taken the dog for a walk or spoken to your spouse. So there’s a piece of advice right there:

Talk to your spouse once in a while. Take the dog for a walk. Play with your kids. Trust me, those tweets aren’t going anywhere. Facebook will still be there, faithfully waiting for your status update.

Why do we get so caught up in social media? Because we’re connected like never before? Because we know more people, in more places, than ever before? Those things are true. But I think we get so caught up in social media because we’re (usually) connected to people and issues that we care about deeply. I’ve personally made the mistake of feeling like I’m letting people down if I don’t stay at the forefront of an issue as it makes its way through the virtual landscape. Those are the moments when I need to remind myself:

This is not my job. And oh, by the way, social media was here long before I created a Twitter account, and it will be here long after I’m gone.

And let’s not forget something that really helps addict us to our smartphones and tablets. All of us, I think, have had a positive experience, or several, or several hundred, via social media. Who wouldn’t want that to continue? When you think of likes or followers or uplifting comments, and the way those make you feel, it’s easy to understand someone’s motivation for blogging and tweeting and instagramming and storifying themselves into a perfect computerized glow of co-dependency. We don’t want the love to stop.

If that’s you: You need a vacation.

At least once a year I go on vacation, for maybe a week. When I do, I also take a social media break. I don’t check my email, or my blog, or Twitter, or Facebook, or Instagram. And two things happen. I don’t miss it, and I find myself with renewed energy and sense of purpose. I feel like I can embrace social media again, rather than feel enslaved to it.

Oh yeah, we’ve all been there. It’s okay to admit it. Social media burnout does occur. When it does, remember that it’s okay to step away, take a break, enjoy the other great things in your life, even take a vacation from it for a while. Don’t worry… we’ll all be right here when you come back, and we’ll be very interested in what you’ve been up to! Go make some offline stories, then fill us in when you return. We’re looking forward to it. When we come back from the walk/date/vacation of our own.

This post is my April entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/04/april-dsma-blog-carnival-4/.
 
 
 

Wordless Wednesday – Tangible proof.

RCDonation03-2014

I received this in my e-mail this week. It’s a great feeling when you get tangible proof that something you’ve done will help someone else.

If you’re living with diabetes and living in the USA, you may be able to donate blood. To find out more, go to redcrossblood.org.
 
 
 

Just stop it already.

What a beautiful weekend of weather we just experienced here in the Mid-Atlantic. Sunny days, highs in the 80s. The Great Spousal Unit and I worked on getting things uncovered and cleaned up on our screened porch off the back of our house. These are the days that feel just fantastic outside.

So I was certainly excited at the possibility of getting on my bike for an actual outdoor ride for the first time in six months. I had too much to do on Saturday, so I knew Sunday was the day. On Sunday, there were pressing issues at home that required my attention. But I planned things out so I could do my ride beginning at 2:00 in the afternoon.

I had a high-carb lunch about 12:30. I made sure not to bolus too much, knowing I would be out in the hottest part of the day burning off those carbs. I got my bike out, checked everything to make sure it was okay, inflated the tires, and changed my clothes. To be sure, I did a quick glucose check before I got started.

The result: 55 mg/dL

What made it worse was the fact that I still had a unit and a half of insulin on board. So I knew that even after stopping my pump and ingesting a few more carbs, it would take a while before I could raise my BG to the level that I would feel safe riding for an hour. I decided to just bag the ride and try to head to the gym on Monday morning before work.

I don’t generally go around feeling like everything is my fault. But if I ever do, it’s at times like this. I can’t tell you how much I wanted to ride this weekend. And when that 55 came in, I was pretty unconsolable. I’m feeling pretty out of shape (pretty much like I have at this time every year for the past thirty years), and I hate when I miss opportunities like this weekend.

But… I’ve got to just stop it already. Sure, Sunday’s ride was a bust, and I think it’s okay to be very unhappy about that. But I also know I can’t change it now. The only thing I can do is the absolute best I can do today. Yesterday was a point of disgust for me. I’m not above using it for motivation to crush those feelings of feeling crushed today and the rest of this week.

I hope you’ll join me in feeling that way, both about my preparation for the ADA’s Chesapeake Bay Tour de Cure in May, and about your daily journey with diabetes. It’s not about your diabetes. At least it doesn’t have to be about your diabetes. It can be about the great life you’re living. Or at least about the inspiration you provide in trying your best every day despite this stupid diabetes. Just stop it already. You are worth the journey. And you are worth far more than whatever you’re going through.
 
 
 

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