Good morning on a fine Labor Day! It may be a federal holiday, but the search for a cure for type 1 diabetes doesn’t take a day off. Today we bring you our second featured diabetes blogger – Fiona Leavitt from Hi Fi. Fiona was diagnosed with type 1 at the age of 32, which illustrates that this disease can strike anyone at any age. Fiona’s blog is focused on her daily ups and down with life and diabetes, and she adds as interesting perspective as a cook.
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When did you start your blog and why?
I started my blog in late June of 2010. I enjoy writing and since most of writing I do at work tends to be more on the bland technical side of things, I needed an outlet to use some of my more colorful metaphors and in the months after my Type 1 diagnosis, I found that I personally benefited from reading about other people’s experiences in D-Management. While everyone’s diabetes may vary, sometimes a fellow blogger comes up with a trick that you can emulate and modify to work for your own situation. I figured the more voices were out there talking about practical day-to-day management, experiences, and ideas, the better off we all would be in the long run. Living in a vacuum helps no one.
In your “It’s Not You, It’s Me” post, you talk about how going sensor-free has allowed you to feel less like a diabetic and more like a person with diabetes, which is an interesting take on things. Are there any other instances where you have found making changes to the way you manage your condition has had a big mental impact on you?
Oh yes, lots of those moments over the last 3 years. With all of the metrics, tools, and moving parts in D-management, it’s easy (for me) to let one thing take control and start dictating other aspects of life. When I find myself making decisions not based on what I want to do but rather based on what some diabetes metric or device seems to want, that impacts my mental well being. I had similar epiphanies when I went from the sliding scale to carb counting because I had more choices in terms of my meals and then when I went from the injections to the pump, I was able to eat spontaneously again and that went a long way towards feeling normal. I was so tickled when, after I had been on my pump about a week, a coworker offered me a Mike and Ike and I was actually able to take it and not scurry back to my office for a shot! It was freedom.
Living with diabetes poses many challenges – which aspects would you say get you the most frustrated?
If you had asked me that a year ago, you would have gotten a different answer but right now, my blood sugars and I are playing nice. So, at this stage, I would say my biggest frustrations come from the Call Centers I’ve had to deal with in conjunction with getting insulin refills and pump supply billing straightened out. Most of the time, my providers are fabulous but recently I had an insulin refill go rogue and it took me the better part of a month to get it straightened out and when I say straightened out, I mean to actually get the refill. The delivery service lost the first shipment and it was a nightmare getting the replacement. Then about a month later, I had an issue with the billing on my pump supply order. The front line people for both of those providers (in call centers) were completely ineffectual, lacked accountability, and in one case outright lied to me. The billing issue was more of an annoyance but the process that I endured with the rogue insulin prescription was disturbing. If I had a choice in my mail order providers, I can assure you I would pick a different one after that. But, I don’t have a choice. That’s a frustration as well. With consumer products, you usually have options. You don’t like Walmart, go to Target. The pharmacy benefits don’t really work that way. Of course, given what many others go through, just having benefits is something.
My other big frustration is that nutritional information isn’t standardized when it comes to serving size or always readily available. Case in point, I’ve seen restaurant nutrition information that doesn’t clearly indicate the carb count assumes that one ORDER of a dish is actually two SERVINGS. So, if you eat the whole thing, you’re getting double the carbs you may have thought. That can have unpleasant consequences.
What do you wish people knew about type 1 diabetes?
I wish people understood that as Type 1’s, we are manually doing something that their bodies do automatically and without thought. The human body is a beautiful and complicated thing. I fully admit, before my diagnosis, I was utterly ignorant about diabetes, what it was and the components of its management, so I try hard to be patient with others since it wasn’t that long ago that I didn’t understand either. I remember once I was trying to explain this to someone and I said “Look, let me take this to an extreme. What if you had to consciously tell your heart to beat each time it was necessary and how hard to beat depending on what activity you were engaged in and your stress level and hell the time of day? What would that be like?” And the person, totally not seeing my point, responded “Well, yeah, but that’s an involuntary thing and our bodies just do that automatically.” I sat there for a minute waiting for light to dawn in his eyes and when it didn’t I said “Yes, and YOUR body regulates blood sugar and insulin levels automatically, MINE does not.” I’m still not completely sure he understood.
The JDCA aims to be an independent analyst of the type I diabetes philanthropic landscape. We are seeking to form a paradigm-shifting coalition of donors who will work together to facilitate a cure for type 1 diabetes by 2025. Two of our major tenets are the importance of defining a cure and establishing a cure-by date.
What is your definition of a cure? What restrictions would need to be lifted off a person’s lifestyle for you to consider something to be a “cure”?
To me, a cure would start with the cause(s). I believe you can’t solve something until you figure out how it happened in the first place and the most puzzling part to me is that I have this condition but have no idea what caused it and if I could have prevented it. If I were given a magic pill tomorrow and my pancreas rebooted insulin production, I wouldn’t feel cured because I would be afraid it would happen again. I would have to know what made it happen in the first place. I prefer to think of my diabetes management as a compensating behavior rather than a restriction. Having said that, a cure would also mean ditching my compensating behaviors. I would like to be able to eat something and not worry about carbs or boluses. I would like to go to the gym and not worry I’m going to go low in the middle of a workout. I would like to fall asleep and not have my insulin pump wedged under me like the Princess and the Pea.
Based on your interactions with the diabetes community, when do you think this will be achieved?
I have no idea when a cure, of any definition, will be found. I try to think about it in terms of dates because inevitably that will lead to disappointment. I’d rather see consistent forward progress because I imagine that the research in finding a cure is a lot like d-management itself whereby some of your most valuable information comes from plain old trial and error.
Fiona Leavitt
http://fionaleavitt.blogspot.com/
