So I'm sitting in a hotel room just finishing the notes for a presentation that I'm giving tomorrow.
I managed to drive the 5 hours up here from Massachusetts without any bad blood sugars and do several hours work on my presentation. I consider that no small achievement since the last hour was in rush-hour traffic, in the dark, and in the rain. Thank you God.
It's been a crazy few weeks for me, hence not posting for a while. But I figured I'd let folks know I'm still here (online that is, not in Canada) and will get back to it soon.
Today is D-Blog day, an opportunity for the diabetic bloggers to try and get the word out about diabetes and trying to live with it (or perhaps to live despite it).
If you've heard about diabetes, you've certainly heard about insulin. That wonderful hormone that's produced by your pancreas and that does an excellent job of regulating your blood sugar - that is if you don't have diabetes.
If you do have Type 1 diabetes, then your pancreas is dead, it's a stiff, it has passed on! OK, I'm going overboard a bit but your pancreas doesn't produce insulin anymore.
No problem, you say, you can just get it and inject it. If only it was that simple.
Insulin is not a cure.
In the 1920's Banting and Best first 'discovered' insulin. Shortly afterwards companies starting making insulin using chopped up cow and pig pancreases. Sounds kind of gross, huh?
Guess what... Things haven't really changed all that much since then.
Insulin manufacturing is a bit better. And insulin delivery devices are much better. We've gone from testing urine to testing blood to determine how much insulin we need. Neither of these options was available in the 1920's.
But for the most part, not a lot has changed since then.
For most people going on insulin is really a long-term sentence. Sentenced to a life of:
Daily blood sugar testing.
Daily worrying about long-term complications.
Daily calculation of the amount of food you're eating.
Daily concerns about exercise, sickness, emotional swings.
Despite all of this, most folks that I know who have diabetes are remarkably upbeat, and have accomplished all the 'normal' things that others do with their lives.
My question is: why does it have to be so hard?
This is not a trivial disease. According to estimates at least 1,000,000 people in America alone have Type 1 diabetes.
If each of these are testing their blood sugar 4 times daily, then this amounts to 4 million test strips a day at an approximate cost of $2 million every day, or three quarters of a Billion dollars every year spent in America just to test our blood sugars.
Now add the cost of syringes, insulin, alcohol swabs, pump supplies, glucagon, ambulance rides, eye treatment, kidney treatment, amputations, etc., etc.
Have I got your attention yet?
If we got serious about working on a real cure for diabetes, not an improved form of treatment, imagine the cost savings. Imagine what all those wonderful people would do when released from the burden of caring for their diabetes.
What are we waiting for?
So here's my call to action.
Why not write to your legislator and ask them if they support increased National Institutes for Health spending on research towards a diabetes cure? That might get the ball rolling.
There are three primary types of diabetes: Type 2; Type 1; and Gestational Diabetes. I've listed them in order of their frequency. Gestational diabetes is generally temporary, and goes away some time after childbirth.
According to often quoted statistics, about 90-95% of those with diabetes have Type 2.
That means that those of us with Type 1 diabetes are part of a reasonably small population. You've probably heard Type 1 diabetes referred to as Juvenile diabetes, because most people get it before the end of their teens. I'm glad this term isn't used anymore because it really is misleading.
After all I got Type 1 in my teens, but that was 34 years ago and I'm still stuck with it. This struck me when I viewed the wonderful photos by Teresa Ollila entitled A Lifetime with Diabetes.
These are moving photos that give you some idea of what it's like to live with diabetes. But all of the photos are of children that (to me) look like they're between the ages of 1 and 14 years.
What I'd love to see is a similar set of photos that show those of use who've had diabetes since, say 1981. Because it doesn't get any easier when you're older. Every day you still have to deal with:
Testing blood sugars. On a good day maybe 4 times, on a bad day maybe 10 or more.
Calculating carbs. Each and every time you eat, how much insulin do I need to take to cover this meal or snack.
Correcting high blood sugars. My blood sugar is 215 and I need to get it down to 100. How much insulin is still around from my last injection? How much insulin should I take to correct my blood sugars? How long will it take until I will feel better again? Until I can eat again? If I'm using an insulin pump, is this because the pump infusion set needs changing?
Correcting low blood sugars. My blood sugar is 43 and I need to get it up to 100. What fast-acting carbs (juice, gatorade, glucose tablets) can I get hold of? Am I in the middle of doing something and can my brain work enough so I can drag myself out of there to get to the carbs?
Checking my state of mind. Am I angry, stressed, frustrated? These will all affect my insulin requirements.
Checking the state of my body? Am I sick? Am I going to exercise? To mow the lawn? Play with the children? All of these will affect my blood sugars and I need to correct for them.
Checking my travel plans. Am I going away? For how long? Do I need to pack: insulin; syringes or pump supplies; test strips; glucose tablets?
Changing my pump infusion set. Where do I put the new insert? Will it hurt? Will it bleed? Thankfully only every 3 days or so.
I said it already, but most of these are things you have to deal with each and every day of your diabetic life.
I've often wondered what 'a cure' for diabetes would mean to me. It's been so long that I can't even imagine getting up in the morning and having breakfast without thinking about it. Or saying to the children, come on we'll go for a bike ride and not having to first check my blood sugars and take extra carbs to allow me to do this.
Even thinking about the possibilities of these, makes my chest tighten with anticipation. I have faith in God, that He won't burden me with something I can't handle and that He can work to change things for the better. So every day makes me think that a cure is possible and that gives me hope. That hope drives me to take as good care of myself as I can so that I'll live long enough to enjoy that cure.
What do you think? Am I just too naïve?
What if everyone reading this post forwarded it to one friend and if all of you just gave $10 to support the work at Mass General Hospital that is being done by Dr. Denise Faustman? Wouldn't that make a difference?
Why not do it today in support of American Diabetes Month?
So you probably already know that November is Diabetes Awareness Month. Knowing that, what can you do?
If you're a regular reader of diabetes blogs, you probably think of yourself as 'aware' of diabetes. But maybe one thing you can do is think again.
For example, have you read the latest edition of the book Pumping Insulin? If you're using a pump, this is probably a good investment in yourself.
What if you're not on a pump? Well, have you considered one of these?
I've been a pump user for over 8 years and I can testify that it has completely changed my life. Gone are the 2-3 ambulance rides a year. And overall my A1C values are much better, though there's still room for improvement.
What's stopping you from looking into a pump?
About 9 years ago, I was fortunate enough to spend a weekend at the Lilly offices in Indianapolis. I was there with other advocates from the American Diabetes Association to get training in more effective advocacy. I remember how impressive the enormous marble lobby was, and the facilities in general were great.
At lunchtime I was standing in line with a woman that I'd never met and I noticed that she was wearing a pump. So I got into chatting with her about this. What was it like to wear? What about when you shower? Does it help your control? What about sex?
This very kind stranger was open to answering any and all questions that I had. And I went home that weekend determined to get a pump.
So what about those questions? Nowadays most pumps allow you to temporarily remove the pump, by simply decoupling the tubing from the insertion site. This really makes the three S's much easier - showering, swimming, and sex! For any of these, you can simply detach the pump (put it close by) and then remember to re-attach it when your finished.
Will it make you feel like a bionic person?
Actually, after a short while I've really forgotten that I have it on. Every 3-4 days I need to get out a new reservoir (syringe) and tubing and replace the existing one, but that's the most intrusive part of using an insulin pump.
The rest of the time it's really just a much more effective syringe. I can accurately give myself 0.1 units of insulin, which is FAR easier than trying to give myself less than a half-unit with a syringe. For someone like me, who has a total daily dose of between 22 and 25 units, this is a huge benefit. Plus I'm only using one type of insulin, with the pump doing all the dispensing. So I can skip meals if I want to, and I do have the freedom to even eat extra (which is often hard for me not to do).
You know, whether you have Type 1 or Type 2 diabetes, I'm pretty sure that you'll benefit from seriously considering a pump.
OK, in honor of Diabetes Awareness Month, what other questions might you have about insulin pumps? Feel free to ask me here and I'll post an answer based on my experience.
Diabetes: technology, devices, software, and other stuff.
About Me
Name: Bernard Farrell
Location: Massachusetts, United States
I was born in Ireland and now live in the US.
I have had Type 1 diabetes for over 35 years. I struggle with my blood sugar, the same as most people with diabetes.
I wear a Cozmo 1800 insulin pump and a Dexcom SEVEN CGM to track my blood glucose levels. I also take Symlin to help control my post-meal blood sugars.
I'm blessed by God, and every day brings the possibility of a cure.
