Category Archives: Into the Time Machine

Into the time machine: If I were talking to myself five years ago…

Stephen…

I’m back. I know, I wrote to you back at diagnosis, but haven’t been in touch much since. Well, we need to talk again.

I know you’re having a really rough time of it right now. People are beating you up nearly every day with their ridiculous requests and their stigmas and their belief that diabetes is simple to manage. In case you haven’t figured it out by now… It’s not. Likewise, work has been wearing on you for a long time now, and it seems like the cloud that’s been following you around for a long time will never move away.

Well, I have some good news for you: This is going to change.

Certain events are going to occur, and it’s going to seem like it’s getting worse for a while, but trust me when I say it will get better. Like it does whenever things like this happen to you, the change will come from somewhere where you least expect it. To begin with, you’re going to finally give in and start on an insulin pump. When I look at it now, I think that may be the first time in decades you say to yourself: “I don’t give a crap what it looks like, I’m still the same person I was before I connected this thing”. About a year and a half after that, you’re going to hear the term “Artificial Pancreas” for the first time. That’s going to set off a number of feelings and journeys of discovery too. Right about this time too you’ll discover this Diabetes Online Community thing that I mentioned in that letter I sent you at diagnosis. Once you do, it’s going to set off little changes… things that you do that seem little on their own, but start to add up to being a better person who’s more connected to his outside world than ever before.

You’re going to eventually call yourself a diabetes advocate. It’s going to sound weird at first when you say that, but at some point you’ll start to reassess your viewpoint of what an advocate really is. Also, going back to those little things, you’ll start to get involved in causes that will not only help others but will also reinforce your own confidence and sense of self worth, which, let’s be honest, needs a hell of a lot of reinforcement right now. Seriously dude… you are worth more than people are saying you’re worth right now… stop hanging your head. Unfortunately, you’ll find that there are causes that need your help all the time. Don’t worry… just do what you can, when you can do it. Something is better than nothing.

For what it’s worth right now, here’s a little advice:

Stop worrying about everything all the time. You’re not 20, or 30, or even 40 anymore. You can’t fight every battle like it’s life and death. You don’t have the time, and you don’t have the energy to deal with everyone’s crap full time anymore. Let other people fight things out. Use the energy you save for something you have a passion for. I know you’re going to find that passion again soon. And there will be people who need your help. Use your powers for good.

You can learn from everyone… even the people who don’t have your best interests at heart.
People are interesting. They are not all the same. They all have something important to tell you, and they are revealing it almost all the time. Be open to listening. Be open to recognizing that it’s okay if you aren’t the foremost expert on everything. Find out how good it feels to help shine the light on someone else who deserves it. Never, ever forget to say Thank You. Over and over.

Be a little bolder.
Remember your best friend from high school? I know, you miss him. He was the kind of guy who could sell anything to anyone, and did. He was the one who, when the Russian hockey team came to town in the early 80s I think, was the only one locally to get an interview because he bought a few pair of American jeans and handed them out to the players. He made friendships in that instance, and even kept one or two of them until he died. What he did wasn’t crazy, was it? He was just saying, “I’ll try this, and maybe it will work”. That’s what you need to do. Ignore that voice that says you’re going to get yelled at for asking. If you do get yelled at, it will be an indictment of their character, not yours. And you won’t get yelled at. People might even say yes.

Be a little happier.
This is important: Enjoy the moments of happiness you’re granted when they happen. Not everything can be sunny every day. And as much as I hate to be the one to break this to you, you’re not going to live forever. So when something good happens, don’t worry about the evil that’s lurking around the corner ready to jump you. That’s old school Stephen-think. Just enjoy the happiness while it lasts. It’s going to make a huge difference for you if you do.
 
 
I really hope this letter finds you. You need a change. A series of changes. They might seem difficult to imagine, but you’re going to pull it off. I know you will. I support you… no conditions. Now be well and start writing the next great chapter of your life.
 
 
 

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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.
 
 
 

Into the Time Machine: 1991

Hello Stephen… it’s me, Stephen. 21 years later. Now that some time has passed, I thought it would be cool to send a letter back into the time machine. I hope this note helps you navigate the next couple of decades.

When you were diagnosed, you were told that you would need to give yourself 2 injections per day, every day, for the rest of your life. That must have seemed overwhelming. I remember you did the math in your head right away: twice per day, 365 days a year, equals 730 injections per year! That’s 7304 every decade. Now, this may sound like lame advice, but hear me out. Today, when I start to feel overwhelmed, I try to break things down into small steps. I try to keep the overwhelming from becoming overbearing by doing what I can do now. My point is that diabetes is a one-day-at-a-time disease anyway. And each day builds upon the next to determine how you’re doing in the future. While that may seem daunting, you can still only live this thing one day at a time. So don’t worry about tomorrow or yesterday. Your best chance to live well with diabetes is today. Tomorrow, repeat those last two sentences to yourself. Rinse. Repeat. At some point, sooner than you think, you’ll feel less overwhelmed.

When it comes to diabetes-related supplies, remember: You’re the customer, and the supplies are products. Whenever possible, take things out for a test drive, so to speak. Find out what works best for you. How to start? Seek out answers from others. In person at first. Later on, you’ll discover this Diabetes Online Community thing where you’ll be able to get firsthand accounts from people using all sorts of things you haven’t even heard of yet. Use their(our) expertise to help you make an informed choice.

When a doctor wants you to take a new drug, or do something new, ask them why. If they can’t give you a credible answer, you might want to consider waiting to fill that prescription or start that new program until you find out more. And if you do take their direction, try to find a measurable way to gauge whether you see an improvement. If a new drug or new program doesn’t help you improve your A1c, or your cholesterol, or your blood pressure, don’t be afraid to tell the doctor that you won’t do that anymore. And tell them why. If you take this advice, you might be able to avoid a certain ugly episode with a doctor that sees you as a paycheck rather than a patient. It’s okay for doctors to make lots of money. It’s not okay for them to treat you like crap, then expect to be paid. Trust me, you don’t want to know any more about it than that.

Let’s talk about burnout. I’m not sure how to break this to you, but if you’re feeling diabetes burnout at some point, you’ll be in a select group that includes about 99.5% of all People With Diabetes (PWDs). And the other half percent is lying. In other words, you won’t be alone. If this happens in about 10-15 years or so, you’ll be able to find hundreds of resources online. This will probably be a time when you’ll need less advice and more support. A shoulder to lean on. So use this Diabetes Online Community I mentioned before (the DOC) to seek out that support. They’re very, very good at it. It’s hard having to do this everyday. And it sucks. So when you’re feeling burned out, use this resource to help prop you up. Then do the same for someone else who needs a boost.

I know that in the next 20 years or so, this diabetes thing will make you worry occasionally. You’ll get mad from time to time. You’re going to feel guilty because you can’t find all the answers yet, or because someone else is suffering more than you. There are going to be times when you’ll wonder if you’ll ever figure it out.

Those things come with the territory. But they will make you stronger, even though it won’t feel like it at the time. Let’s talk about those another time. For now, remember: one day at a time; make the best decisions for your care, and don’t be afraid to ask questions; and seek out help when you need it. That’s enough for now. Keep doing your best. And don’t forget to think of others and help them whenever you can. I’ll be in touch… back in the future.
 
 
 

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