Me (to the dude at the coffee shop): “Do you guys have any Splenda? I only see regular sugar over here.”
Coffee Dude: “Um. Yeah. I have Stevia. Will that work?”
Me: “Sure! Thanks.”
Coffee Dude (hands me the packet and in a self-righteous, preachy tone): “You know, the real stuff is a lot better for you than all these chemical fake sugars. It’s not worth saving the calories with this crap.”
Me: “I have diabetes, so I never use real sugar in my coffee.”
Coffee Dude: Awkward silence. “There will always be Stevia at this coffee shop for you.” (said with a big smile that said, without words “sorry about my judgmental comment”).
Me: (returning the big smile) “Thank you, I really appreciate it.”
Um…could it be the fact that the sensor isn’t on my body anymore…but the receiver is still showing a blood sugar? I took this sensor off right before I got in the shower because it was time to change it. Since my receiver wasn’t nearby, I didn’t deactivate the sensor right away. I was so curious about the fact that it was still showing a blood sugar even though it was off my body that I left it for a little while longer. Interestingly enough, the next BG it showed was a 58mg/dL! I have to give it props for accurately showing a dip in glucose though…because I am pretty sure the dresser I left the sensor on doesn’t have any sugar to show for itself! Too funny.
Sometimes, you actually really want to see double arrows down! Thank you, sunset jog.
When my last A1c came back at a whopping 8.1% three weeks ago, I pledged to get it back down under 7% by my next visit. Now that our travels in Southeast Asia are over and I have food options beyond rice and noodles again, I thought it would be easy for me to double down on my d-management efforts and get my numbers back in line.
Then we decided to move to Portland, jump right back in to wedding planning, look for a new job, catch up with friends and family, and start exercising again. We didn’t just throw a monkey wrench into our lives, we threw the whole damn toolbox in it. Things have been hectic to say the least. While looking for a place in Portland, we stayed at Jacob’s brother’s house, and now I’m back down in San Diego getting everything ready for our move. It’s been a lot of dining out, irregular schedules, and as a result, some big swings in my blood sugar. I feel like I haven’t had time or the opportunity to take better care of my diabetes. Poor me, right?
Then, the other day after yet another to-go meal that was high in carbs, as my Dexcom blared “HIGH” at me from my purse I realized that I was making excuses for not taking care of my diabetes as well as I should be. Yes, it’s been challenging living like nomads for the past few months but you know what? Running outside doesn’t cost a dime and even 10 minutes is better than nothing. You can get salad and soup and burgers with no bun to-go from restaurants instead of their high-carb fare. And I’m not paying all that money to COBRA for nothing: I have a CGM, sensors, and pump supplies now, so I need to use all my fancy tools to do what they’re supposed to do, which is help me manage well.
After we get settled in Portland, there will still be plenty of distractions: wedding planning, the job hunt, and hopefully a puppy soon too. There’s never a good, quiet time to start better diabetes management. The time is right now, and there are always better choices to be made. I want the last A1c I had to be a number that I don’t see again for a looooong time-preferably never actually. And that means its time to put in the work it takes to bring it down, right now!
We’ve all said it at some point: “I wish Type 1 and Type 2 had different names, I’m so sick of explaining the difference.” I recently received an email from a mother of a child with diabetes who has organized a petition to seek just that. Jamie Perez explained in her email that she filed the petition along with another mom of a Type 1 child “to more accurately reflect the nature of each disease. We tried to do this in a way that benefits both the T1 and T2 communities and helps protect our T1 children from dangers caused by the prevalent misconceptions..”
My immediate reaction was “it’s about time.” Since being diagnosed, I’ve been trying to explain Type 1 diabetes. What it is, why it happens, and why it’s different from Type 2 diabetes. I’ve been asked if I have the “bad” kind of diabetes (to which I always respond “remind me what the good one is again?” because we all know they ALL suck). I’ve been asked if I gave myself diabetes because I ate too much sugar (to which I always respond “that’s not how you get any kind of diabetes, it doesn’t work like that”). And I’ve spent way to many breaths explaining to people that no, this won’t go away if I just get myself to a treadmill (and that Type 2 is a progressive disease and not always related to exercise levels so the treadmill ain’t always the answer for Type 2 either). Basically, I’ve been explaining all kinds of diabetes (don’t forget our gestational friends and LADA either) for as long as I can remember and I’m tired of it. So I signed Jamie’s petition thinking that was the end of that.
Then I started reading about this whole debate and the unbelievable s&^%storm this has caused. The best arguments against the name change were well articulated and thought out, the worst came down calling it “useless”, “a waste of time,” and said that it unequivocally creates a divide between the Type 1 and Type 2 communities that drives us further apart when we should be working together. Several bloggers said that changing the name won’t help educate the media anyways, that it takes a long time and a lot of energy to do for something that might not ever happen, and that past attempts at name changes have not proven successful.
Wow. Although I think these arguments have merit, and many of them were well-written and articulate, I have to respectfully disagree. First off, I have never known the diabetes community to not attempt something because it “takes a long time and energy” and might not happen anyways. That’s the basic premise of searching for a cure, and we sure aren’t stopping that because “it takes a long time.” And if you think that this petition will distract from other diabetes efforts that are more important (i.e. research) remember that what’s being asked right now is ONE signature from you that takes two seconds to do, and two moms who are leading the charge on this. I can promise you they’re more passionate about finding a cure than anyone, because they’re watching their kids struggle with this disease every day. Petitioning for a name change isn’t taking away money from research organizations or public education programs. Yes, it could cost money down the line when names have to be replaced on educational materials, medical materials, and for public education but let’s not put the cart before the horse yet.
I also remember not that long ago when the d-community decided it would not longer refer to “diabetics” because the word defined us by our disease. It was practically insisted upon by bloggers and Twitter and everywhere else in writing that folks were referred to as “People with Diabetes”, or PWDs. I for one did not mind being referred to as a diabetic but I adopted the nomenclature because I respect the wishes of those it did bother and I want everyone to be represented. I understand that many people are not bothered by being lumped in to the same group, but some folks are and that’s something to think about. No one balked at PWD when that became the standard.
The tough one for me to understand is the idea that this is a waste of time. I will tell you what a waste of time is: a waste of time is pharmaceutical companies developing the exact same drug over and over again for Type 2 diabetes. Currently, there are no less than four DPP-IV inhibitors on the market (a Type 2 drug, all four work in the exact same way, they vary by dosage and way of clearance by the body) and NINE in development. Why do pharma companies keep developing the same drug over and over again? Because they go for the biggest money maker, not innovation. If you think pursuing a name change is a waste of time, imagine spending billions of dollars on a product that kinda helps a condition a little bit over and over again. What I’m saying is that there are much larger “wastes of time” than a petition for a name change. And people love to say that Type 1s can ride the coattails of Type 2 research to yield drugs or treatments that can help both. In the last 100 years, there have been two drugs indicated for Type 1 diabetes: insulin in 1921 and Symlin in 2005. That’s not a good track-record for coattail-riding. What if those billions of dollars spent on me-too drugs had been put into finding a cure? Or, since a cure won’t make a company any money, how about novel therapeutics that help people live with diabetes better. Anything but the same damn drug over and over again. I think the “waste of time” claim is better spent somewhere else. Educating the public about serious diseases is not a waste of time. The name change could be a wonderful platform to begin more broad-reaching and better educational programming about all kinds of diabetes.
Those are the reasons I’m for the name change. But there are two reasons I have a tough time with it, and think that it does need to be done very carefully. The first is that there are many kinds of diabetes already (T1, T2, gestational and LADA) and we may find out that there are even more as research continues. For this reason, I think it will be difficult to find the appropriate names for each disease, but as Jamie pointed out, this should be done by the medical community with careful attention to the fact that we might not know every kind of diabetes yet. And when you think about it, the fact that there are several different types that vary in epidemiology, treatment, and progression suggests we should have been giving them individual names in the first place. If we discover more types of diabetes as research continues, they deserve their own names as well.
The second part of this that is hard for me to adjust to is that I would never want a name change to make the Type 2 diabetes community feel that Type 1s don’t want to be associated with them. This has never been the case for me and I don’t think its the case for any Type 1 worth their salt. Type 2 is not some self-inflicted, shameful affliction for those of low self-control. It is a progressive, degenerative disease brought on by widely varying contributions of genetics and lifestyle, and disproportionately affecting those of lower socio-economic status and minority descent. It is a deeply complex disease deserving of it’s own name, public education, and research. I would think that the Type 2 community would want this complexity reflected in the name of their disease as well. I can’t tell you how many of my Type 2 friends go through the same stereotypes and explanations of how Type 2 works and why they have to take insulin or don’t have to take insulin yet or what that pill does. The bottom line is there needs to be more education about all kinds of diabetes. The last thing I want is a divide between these two communities, but I don’t believe in my heart that they are the same disease. My perfect world would contain the name change as well as a massive public education campaign that educates the world about both diseases, how they are treated, and why research for both of them are so incredibly important. I’m happy to start with signing the petition.
Alright. I said my piece. But I am wide open to debate and I think talking about this sensitive subject is exactly where we need to begin. Please, by all means, leave your feedback in the comments or send me a message directly at email@example.com.
If you agree with the name change, you can sign the petition here:
And if you’d like more information about why these two moms are working towards this change, check their website here: http://www.diabetestypeconfusion.org/
This is what happens every. Single. Time. I change my damn pump. I start off in range with a great blood sugar, but then I get a steady creep-up into the 200s until things finally calm down about five hours into wearing a new pod. For this one, I even bolused before AND after changing the pod out so I’d have some rapid-acting on board. So frustrating. What’s a gal got to do around here to have a pleasant site change!?
Ah, COBRA coverage. Totally awesome and life-saving and at the same time, unbelievably expensive and frustrating. I took a big leap of faith in the benefits department when I left my job in January. Although it was no longer the right job for me, there’s no arguing that the benefits there absolutely rocked. I had all my diabetes supplies covered in full, including CGM and pump items. This is not the norm in the benefit world, and it was tough to know I was giving that up, even if for the sake of building a better future. Fortunately I was able to purchase COBRA coverage that keeps my benefits the same for up to 18 months if I need it. Which, given the job market, is not entirely unrealistic. The one issue? The price tag: $600 dollars. A month. Yikes.
We did plan for this and right now I’m fortunate to be able to cover the costs while I’m looking for work here in our new city of Portland. But forking over that hefty amount every month isn’t exactly awesome. Traveling through Southeast Asia, we learned about all sorts of different kinds of healthcare. Most countries in Asia have socialized medicine, and we spoke to a fair amount of British and Australian folks about healthcare. The biggest misconception we had about their healthcare was that they had to wait months for normal procedures and visits (they don’t, in fact they can get in faster than you can here in many cases) and on their side, they assumed that if you were hit by a car in America and uninsured that you’d be left to bleed to death by the roadside (we explained how the emergency room works).
In comparing notes, it became clear that there are pros and cons to every system, and overall, most people had big complaints whether their healthcare was socialized or not. But one difference that was noted across the board was the fact that folks in other countries believe they have a right to healthcare and that it is the government’s job to provide at least basic services. In America, our system says we think this is a privilege, not a right.
But here’s where I get stuck: my last job gave me benefits that gave me access to the latest and greatest technology in diabetes. In the UK, they government plans don’t cover CGMs or pump supplies (from what the Brits told me, please someone correct me if I’m wrong). When it comes to diabetes, is it better to have everyone use the basics and have everyone covered, or allow private insurance to cover innovative tools, the development of which is creating progress in better care and ultimately, a cure? I don’t want anyone with diabetes to go without supplies, but I also think that CGMs should be the standard of care. No company is going to take the time to develop something if they don’t get a return on their investment, and in that sense, capitalism drives innovation.
This is not a simple question and there are no simple answers. It’s really easy for me to be pissed off when I’m forking over $600 a month for a disease that’s not my fault and is never going away. But I’m also getting all the “fancy” stuff along with that. The question is, how do we meet in the middle without compromising people’s health? I don’t pretend to have the answers, but I think it’s reasonable to start by asking if there’s any country out there that’s doing it better. They might be on to something.
I’m getting used to a whole new smorgasbord of delicious food options here in Portland, a city where the food carts seem to outnumber brick-and-mortar eateries. I have only two issues with this: 1.) Where to start? and 2.) how to bolus for this:
Yes, that sign says “Viking Soul Food” and no, I don’t have any idea what that means. But hey, at least it appears there several low carb options on their menu…this city cracks me up!
You may remember from many months ago a girl who worked out a lot. I went to the gym several times a week, went running and hiking with wild abandon, and even indulged in the occasional kettlebell class.
I haven’t seen that girl in three months, and man, is she a tough gal to track down. Our trip to Southeast Asia was amazing in so many ways, but exercise was not part of the experience. Yes, we walked hundreds of miles over the course of our 90-day extravaganza, touring ruins and cities and museums. But we didn’t go running once, nary lifted a weight, nor upped our heart rate save a few hikes in some national parks. What I’m trying to say folks is that I am utterly, completely, and totally out of shape.
Oddly enough, I dropped about five pounds over the course of our travels, but that’s no doubt due to the fact that I lost muscle mass, which weighs more than fat. Although it’s nice to see a lower number on the scale, it’s discouraging to know that I have an uphill battle ahead of me when it comes to my fitness. Yesterday I decided it was time to ease back in to things, so I slipped on my running shoes and went for a 10 minute run. Yep, you read that right. 10 whole minutes. It felt absolutely great, and I am sure I could have gone longer, but I’m glad I didn’t given my level of soreness the today.
Tomorrow I’ll up it to a whopping 11 minutes, and I’ll keep increasing slowly until I get back up to being able to three-milers. I’m also toying with the idea of training for another half marathon because I think it may help me explore Portland in a unique way. That’s a ways off though. For now, I’m just trying to make it around a few blocks. Going running yesterday reminded me how much I miss my regular workouts. They’re my favorite way to relieve stress, and nothing beats a blast of fresh air when you’re feeling overwhelmed. And of course, one of my top priorities right now is bringing down my A1c. I’d like to get it down a full percentage point in the next three months, and I know exercise will be key in helping me accomplish this. Here’s to doing 11 minutes tomorrow!
Jacob and I successfully made the 15 hour drive to Portland from San Diego over the weekend, and now we’re camped out at his brother’s house and starting the Great Apartment Search of 2013. We’re also looking for jobs, emailing with our wedding coordinator, and catching up with folks we haven’t talked to since before we left for our trip. Things are…a bit hectic right now to say the least.
Adding to my stress levels are the results of my most recent A1c. I knew the last three months’ numbers weren’t going to be pretty. After all, I’ve been running around Southeast Asia shoveling noodles, treating crashing lows, and adjusting my basal insulin more times than I can count. I did wear my CGM the entire trip, but even the constant vigilance could not have prevented the wild spikes and lows I experienced. I shouldn’t be surprised, but my A1c came back higher than it’s been in years: 7.8%.
Ug. We all have different A1c goals, and I’m most comfortable when I keep mine under 7% (and preferably under 6.5%). I was definitely expecting an increase, but not by a full percentage point (I was 6.8% before the trip). It’s tough to see that number because it means I have a lot of work to do. I’ve already switched back to my normal low-carb diet now that I’m back in the states, and this week I will ease back in to running as we get our bearings here in Portland. But I’m still living out of a suitcase and eating lots of to-go food, which makes it tough to get into an optimal diabetes-management routine. And with the stress of moving, wedding planning, and being unemployed, I know there’s more challenges ahead for my numbers.
However, I take comfort that at least I’m back in a place where A) I speak the language and can ask for Splenda in my coffee and no rice with my dinner and B) back on my insulin pump which allows me to customize my basals and bolus for even small BG excursions and C) not switching hotels every night and going to a new city/activity/food/language all the time. That’s more stability than I’ve had in months! I’m technically back on the right track, even if there are still bumps in the road ahead. Three months from now, I expect that number to be way, way down!