An Alphabetical History: B is for Blogging

i_love_blogging1I found this little meme on another blog, and I thought it would make a great platform for talking about how I started blogging!

1. When did you first start blogging and why?

I started my first diabetes blog, Lemonade Life, in 2005, in the summer between my sophomore and junior year in college. At that time, I was the youngest blogger in the DOC, which, as it happens, wasn’t even called the DOC. In fact, it didn’t have a name at all.

A forgotten bit of the DOC “origin story” is that it was first given the name “the OC.” But so many people thought were were talking about the television show, The OC, that the D was eventually added to clarify things. So now you know.

Anyway, I eventually got tired of talking about diabetes all the time because I just don’t necessarily enjoy rehashing every high blood sugar or conversation have about my disease. Lemonade Life eventually became a catch-all blog for my life. Eventually I got tired of blogging entirely, because I was going through a depression and talking about anything at all was just too much work. So I closed the doors on Lemonade Life. For six months, I didn’t blog at all.

Eventually life improved and I got the itch to interact again, so I opened With Faith & Grace. This was going to be similar to Lemonade Life, a catch-all life blog, but I eventually decided I wanted a more dedicated diabetes space. Now that I’m going into diabetes education and still writing frequently about diabetes, I wanted a place that made my diabetes experiences a little more obvious.

2. Have you had any past online presence?

Aside from the aforementioned blogs, I did have a Livejournal for a few years in college that I used to keep in touch with my friends from high school. It is now locked up where no one can find it.

I also worked at DiabetesMine from January 2011 until August 2012, so that could also be considered a “past” online presence because obviously it is something I did in the past.

3. When did you become serious about your blog?

I probably became pretty serious about it after a few months and I noticed that more people were commenting on it. Blogging became really serious probably around 2008, though, when I attended my first blogging conference with Medtronic. It became even more serious when I was hired to work at DiabetesMine and was a job! I had to take it quite seriously at that point.

4. What was your first blog post?

My first blog post was on July 12, 2005, and it was basically just an intro post. Not terribly interesting, actually.

5. What have been your biggest challenges blogging?

Several! First and foremost is coming up with something to talk about. Sometimes I think people wouldn’t be interested in something and so I don’t write about it, or I think people will be interested in something and then no one reads or comments. I tend to have a lot of self-doubt when it comes to my material.

The other big challenge would be staying encouraged to blog when no one comments. I have written about this in the past and it’s still a pretty big sticking point for me. Of course, I am a terrible commenter so lately I try to shut up about it because it’s kind of like the pot calling the kettle black. I really have no place to complain. I also find it challenging to find time to blog, and of course, all the technical issues with making a blog look nice and pretty.

6. What is the most rewarding thing about blogging?

There are two things that have been most rewarding. The first are the connections that I’ve made with people, which have helped both me manage my diabetes and then the people who I have helped manage theirs. Blogging is a huge reason why I decide to go back to school to become a diabetes educator. I find it extremely rewarding to help people feel better about their diabetes, leave them feeling more knowledgeable and capable, and of course, I always end up learning something about diabetes because we are all so different.

The second thing that has been rewarding is on a larger scale with the interactions that we’ve had with the companies in the diabetes industry. It’s not something that has been easy, but it has been interesting and things are continually improving in favor of the patients. I’m really proud of what the companies have done to improve their technology, their outreach, their customer service. I think we will only see things getting better as the years move on. I know things aren’t perfect and that there are still a lot of issues and kinks to work out, but it’s been a pleasure to be a part of the solution.

7. What is the most discouraging thing about blogging?

Can I be honest? I think the most discouraging thing about blogging — well, anything really — is when other people find success when you don’t. Which is of course a terribly silly thing for me to say because it’s not like I’m at the bottom of the barrel, or being called last for a round of kickball. But sometimes it seems like everyone else has more fans, more comments, more likes, more speaking engagements, etc. However, I will say that none of these things are really things that I strive for anymore. Maybe that makes me a more mature blogger? Maybe I’m showing my age?

8. What is your lasting inspiration or motivation?

My lasting motivation to write about diabetes is my own diabetes. It’s not going anywhere, for any of us, so it’s pretty much a continual source of material. Also the idea that with my experience comes information and support for someone else makes it really encouraging to share my story.

9. What is your blogging dirty little secret?I don’t read nearly as many D-blogs as I used to. Somehow I just never kept up on all the new blogs so for awhile I was reading like the same blogs who have been around for a long time. I’ve been trying to get better about finding new D-blogs and following people on Twitter. Basically being an all around better member of the DOC because I was feeling totally out of the loop for awhile.

10. What is your current goal as a blogger?

My biggest goal as a blogger is just to continue sharing my story. My biggest goal as a writer, however, is to finish my book by this summer. It’s been slow going because I’m very busy with a full class load and working part-time, but I will get there!

11. Have you learned or become passionate about anything through blogging that caught you by surprise?

Not really. Blogging was borne out of my passion for educating people about diabetes, and so that has remained fairly consistent throughout my entire experience with it. I will say that blogging has intensified my passion for educating people, which is why I chose to go back to school to become a diabetes educator. I would say that was a surprise because when I first started blogging I was planning on working in public relations! I had no idea that diabetes would eventually become my profession.

Elsewhere…

woman-typing-at-computer2My latest piece for Insulin Nation is now online! I’m talking about the science behind why we have a basal rate and tips on how to conduct a basal test. Plus, the DOC’s Courtney Slater is in it! She’s pretty awesome.

And an oldie but a goodie that I forgot to mention is an article I wrote for their sister site, Type 2 Nation, about probiotics and diabetes.

I’ve also got a few projects in the works for Diabetic Living magazine. The article I wrote on healthy relationships with your healthcare professionals will be out in Spring 2014, plus a couple more articles in the summer issue. I’ll have more info about those later.

Life as Performance

I don’t like to tell myself No.

It’s probably my greatest character flaw and something that I briefly talked about last week in my post on my diabetes secrets. My inability to tell myself No has affected my weight, my diabetes, my finances, my relationships… pretty much my entire life and I haven’t quite been able to break myself out of the habit of letting myself get away with things that I know are not good for me. I have learned over the years how incredibly easy it is to convince ourselves that the absolute worst decision in the world is the right one.

For instance, if I was at an event where there was food, and they had four kinds of cookies available — and I liked all four flavors — I would eat all four cookies. Often times when I’m in line at Starbucks or at a restaurant looking at the menu, my mind will zero-in on the worst food possible as the one that I should most definitely order even though I’ve told myself dozens of times that I need to start eating healthier, I should stop eating so many carbs, I shouldn’t eat foods if I can’t count the carbs. All of those are very well-intentioned resolutions that I’m not sure I have ever actually followed through on.

And in the end, all it does is hurt me.

On Saturday, while in Philadelphia for the Insulindependence event on diabetes and exercise, I started both lunch and dinner at perfect numbers. I was 89 mg/dl at lunch (and dropping) and I was 104 mg/dl at dinner. My blood sugars could have been meter advertisements! And then what do I do? I order sandwiches with a boatload of French fries and I eat all of them. I have never been able to properly count French fries to save my life (mostly because I’m in constant carb denial about how much they really are), so I end up skyrocketing to 300+ for several hours after.

I attended the conference with one of my best friends, Caroline, and we discussed my difficulties with food and weight on the way home. At one point, she shared with me an email exchange that she had with a lurker in the D-community who has very strict control over his diabetes. She told me that this individual never eats carbohydrates if his blood sugar is over 150 mg/dl. Wow, I thought. We both agreed that it’s hard to be that stringent, and this person is a pretty unique individual.

But then I realized that there are people who are that stringent with their diabetes. Pregnant women with diabetes are very strict with their diabetes. Athletes, like the ones attending that days event, are also pretty strict with their diabetes management, because it affects their performance. Gary Scheiner, one of the presenters, shared how blood sugar can affect our strength, stamina, flexibility, and our mental energy too. We manage our diabetes around our fitness because that allows us to do what we want. I realized that our desire for our goal versus our desire for the immediate reward was incredibly important. It’s not that we love one thing and hate the other. It’s that we love one thing more than the other.

I realized that when it comes to my fitness goals, I’m also pretty diligent about doing what I need to do to get outside to train for a race. I tweak my basals and boluses so that my blood sugars are in that prime spot — not too high and not too low. It’s the reason I went from being an evening exerciser to a morning exerciser. In those times, my desire for running outweighed my desire for sleep. But I find that I only do this for running. I’m only concerned with having the best blood sugars when it comes to my running performance. But what about the other 23 hours in the day?

Why don’t I see my life as performance?

For one thing, I think at this point I’m used to weaving in high and low blood sugars so that I’m able to function pretty normally if my blood sugar is 180 mg/dl or even 280 mg/dl. Having elevated blood sugars doesn’t affect me the way that it would if I was always running. Because mildly high blood sugars are typically asymptomatic, it’s very easy to ignore them as not being a big deal.

Gary said that it’s very difficult for most of us to be motivated by threats of complications in the far off future. We react to things in the immediate present. This is very true for me. I think I have had a hard time motivating myself to say No because saying Yes hasn’t really been such a bad thing. I don’t have any heart, kidney, or eye problems as a result of my diabetes. Other than a mild thyroid deficiency, a Vitamin D deficiency, and a broken pancreas, I’m the picture of perfect health.

So what’s my motivation here?

Well, two things. Dr. Matt Corcoran, founder of the Diabetes Training Camp, explained that one of the key steps to enhancing sports performance is to actually cutting out the chaos in our lives. Simplifying our diabetes management will make it easier to make modifications to our diabetes plan. Although we can’t completely eliminate variables, if we’re able to really fine-tune our basal rates and bolus ratios, have a solid nutrition plan, and more effort overall going into managing diabetes better, then that will only help us when it comes to exercise. We will be set up to succeed.

The second thing that struck me was a presentation by Anna Floreen, from Glu, who participated in an Artificial Pancreas trial in Boston. I have heard many people with diabetes say that for the first time, they felt “normal” when they were on the the Artificial Pancreas. Their highs were minimized and their lows non-existent. Their week-long A1C was close to perfect. I thought to myself, how would I even know what normal feels like anymore? Maybe I am just incredibly adapted to feeling like total shit all the time. What would happen if I actually worked toward being more like the non-diabetics in my life? How would I feel then?

Working toward being like the non-diabetics in my life does not mean acting like one. Because I’m not a non-diabetic. I’m not even like other diabetics. My husband gently pointed out to me the next day while I was discussing my revelations that I do have a tendency to want to do the things that I see other people doing, even if I know it won’t be beneficial to me. If I see someone else eating four cookies, then goddamit, I want four cookies too.

Telling myself no is probably the most uncomfortable thing I could ask myself to do. I’m already writhing in anxiety and I’m not even saying No to anything. But as I talked to Caroline, I realized that there are a lot of uncomfortable things that I do to manage my diabetes. I check my blood sugar and I wear a pump and CGM. They aren’t fun, but I do them because that’s what you do. Then I considered that maybe what I needed to do was reframe the negatives into positives.

I read this in a parenting magazine a long time ago: they said that when disciplining a child, it was better to give them an alternative rather than simply saying No. Instead of saying “No, don’t color on the wall!” you would say “Color on this piece of paper.” Instead of “No, don’t hit your sister with that toy,” you would say “Play with this other toy.”

I’m not entirely sure how to reframe denial into a positive, but I think I would start this focusing on what I would be getting, or perhaps even a compromise to make certain situations a little easier. Instead of “No, you can’t have all four cookies” I could tell myself that I can have my favorite flavor now, and save the others for later. Or I could tell myself that instead of having French fries at the restaurant, I could have ice cream at home (which has carb counts and I can measure it out, thus making it easier to manage then copious amounts of carbobomb French fries).

I hate telling myself No. But I also want to perform better. Not just as a runner, but as a wife, student, employee, friend and — hopefully soon — mother.

 

 

My Diabetes Secrets

call-center-secretsLike many of you, I have found the new D-website My Diabetes Secrets to be fascinating, but it’s also a bit sad and scary to see the pain that others are going through.

While there are many benefits to anonymously share secrets, I also feel that there is still this unspoken shame that what we are feeling isn’t “normal” or “accepted” and that’s why we must say these things anonymously.

I don’t want to take away the freedom of anonymity, because it can bring a special kind of relief, but I’d like to add to it by openly declaring some of my personal truths that may otherwise have gone unmentioned. 

In honor of World Diabetes Day, I present to you fourteen of my diabetes secrets.

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I am intensely jealous of anyone who calls a 160 mg/dl a “high blood sugar” or who can feel symptoms of a high blood sugar at 200 mg/dl. I give myself a pat on the back if I’m under 200 mg/dl and the cotton balls don’t take over my mouth until at least 340 mg/dl.

~*~

On one hand, I don’t understand parents who treat diabetes like it’s the Bubonic Plague, the absolute worst thing that could ever happen to their child. I don’t like it when diabetes is over-dramatized. Just raise your child to be the person you wanted them to be before they were diagnosed. Everything will sort itself out in the end.

~*~

On the other hand, I don’t like it when people with diabetes act like diabetes is not a big deal, and they just go about their day as if diabetes is just like brushing your teeth or wearing contacts. It isn’t! It’s a big fucking deal!

Except it isn’t! It’s cool! Everything’s going to be okay! Maybe!

Clearly I’m very conflicted about all this.

~*~

I have to bite my tongue so often when people say the dumbest, meanest, most inane things about type 2 diabetes. People think they are making me feel better by making fun of “those others” but really it just makes me want to flip a bitch switch. And most of the time the worst offenders are people with type 1 diabetes.

Repeat after me: Obesity is NOT the cause of type 2 diabetes. It is one of the many factors that contribute to it.

~*~

I wish I had the motivation to be as strict with my food and exercise habits as some other people I know. I don’t know how they do it and I’m ashamed that after 20 years, I still feel like I don’t take my own diabetes as seriously as I should.

~*~

I think the reason I am so lax with my eating habits is because I’m continually rebelling against my disease. Even if I know it hurts me more than I’m hurting “it,” I still feel like saying no means diabetes is winning.

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I dislike testing my blood sugar. I dislike it even more when I know my blood sugar is high. Which is, of course, precisely when I should be testing it. I don’t like to see the number, and I don’t like that it makes my meter average go up. As if that has some sort of bearing on what my A1C will end up being.

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I’m absolutely terrified that I will either 1) be a terrible diabetes educator and / or 2) hate being a diabetes educator.

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I rarely bring back-up supplies with me. I’ve been caught in a bind on more than one occasion, yet that hasn’t changed my habits.

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Before I got my CGM, when I’d wake up in the middle of the night to pee, I knew I was high. But I wouldn’t always test because I didn’t want to turn on the light so I would just bolus as if I was 300 mg/dl. It was pretty stupid, but it always worked. My endo was appalled when I told her this.

~*~

I feel like I’ve been demoted from Big Important Thought Leader Blogger to just your average D-blogger. Or maybe I resigned? It’s funny how tired you can get of your own supposed life’s work. Sometimes I’m exhausted and annoyed with thinking and talking about diabetes and I just want it all to go away. But when I see others doing amazing advocacy work I get jealous that I’m not putting in more of an effort. It’s a constant tug of war on my heart.

~*~

I’m firmly planted on Team “Changing The Name Of Diabetes Won’t Make It Any Easier To Understand Or Live With So Move Along” I really just don’t get the big deal, nor do I think a name change will help a damn thing. It’ll just give them one more thing to be confused about.

~*~

Not everyone in the diabetes community likes each other. I used to be intensely bothered by this fact, but then I realized it’s completely normal. And once I realized that I only needed to spend time with those who liked me, and not try to force the entire community to like me, I felt much better.

~*~

And to the person who posted this secret, you are definitely not the only one who has wondered how much insulin it would take to not be a person with diabetes anymore.

The Truth Revealed

truthOn Saturday night, I downloaded DexCom Studio (the software used to produce logs and analytics) onto my husband’s computer (I’m a Mac, he’s a PC). I realize this is not the Thursday I said I would be doing, but that’s the deal. So I uploaded my DexCom readings thus far and reviewed the results.

And then I broke down in tears.

Okay, that’s a slight exaggeration. I didn’t actually cry. But I thought about it. There were definitely some expletives though.

As you can imagine, based off my recent post about having an A1C at 7.7%, my blood sugars weren’t going to be fantastic. In fact, they weren’t even particularly good, but there was one area that was a particular travesty: after dinner and through the night. Once I wake up, I’m able to correct, and I stay busy enough at work that I don’t have a lot of highs (although there are some). But then as soon as I’m finished with dinner, I crest up to the 300s and basically stay between 200-300 mg/dl for a good — er, not so good — 9 hours. No wonder my A1C is shit!

Amongst my plans for the A1C domination were some pretty lofty goals. And I have managed to accomplish… one of them? Maybe two? If we’re being nice, that is. Let’s review how I’ve been doing over the past three weeks:

1. Wear My Dexcom CGM

Yes! I actually have been doing this! Woot!

2. Eat carbs only when there is a carb count.

Er… no. I mean, I want to. I would love to. But little life things like Erik’s birthday, my mother-in-law being in town, pizza at work and general “Oops I forgot to bring lunch to work!” moments have made this a little trickier. I totally had the opportunity to have a yummy salad for lunch yesterday when I forgot my lunch at home, but instead I bought a burger and sweet potato fries because… yeah, exactly. There really isn’t a “because” other than “Did I mention there were sweet potato fries?”

And I totally paid the consequences later when the slow-digesting fatty burger sank me to a 72 mg/dl before flying me up to 362 mg/dl four hours later. Sneaky bastard.

3. Exercise only in the morning.

Well I’ve been exercising in the morning when I actually get around to exercising. One thing I found out was that my blood sugars actually go up after a morning run. No bueno.

4. Regularly review my blood sugars.

I finally did this on Saturday when I downloaded my DexCom and realized that yes, I really do suck as much as I think I do in the evening and nighttime hours. And I was able to make the necessary modifications to my basal and bolus ratios as well. For the most part it looks good so far, but I need another day or two of trends before I’ll really know if I’m set (for now).

5. Talk to my “pit crew” more often.

When I realized I was going up after running, I was totally confused and wasn’t sure what to do. Rather than just correct for the highs, I wanted to be proactive! So I talked to Gary about it and he said that immediately after running, I should bolus half my usual correction for the spike that I predicted would happen. That would give me the extra boost to keep my blood sugar stable but without going overboard because of the extra sensitivity from running.

6. Overcome “Carb Denial.”

I’m still struggling mightily with this. I think I just have really crappy carb-counting skills or somehow the food I’m eating is an enormous sugar bomb. I kept thinking I was bolusing enough when I was eating out, but I always ended up 300+, sometimes even landing in the 400s. Blech. I wish overcoming carb denial was easier! I swear I’m not trying to underbolus anymore! I just don’t know what the crap is in this crap!

7. Don’t give up.

Well, I’m still here, aren’t I? Another day, another blood sugar…

An Alphabetical History: A is for Advocacy

Your-Voice-Advocacy-14When I was growing up, I wasn’t that interested in being a diabetes advocate.

I remember talking to my mother in our kitchen when I was probably maybe twelve or thirteen years old, telling her that it was bad enough that I had to live with diabetes everyday. I certainly didn’t want to spend my free time talking about it!

Diabetes advocates? What a bunch of weirdos.

To be honest, it was probably more of a defense mechanism against an acquaintance of mine who was the diabetes advocacy equivalent of a famous actor. Even though she was a year younger than me, she had already traveled the country, met important politicians, spoken in front of thousands, been featured on television and in magazines. She was thoughtful, eloquent and fiercely determined. And I was fiercely jealous of her.

(For the record, her name is Clare Rosenfeld, and we went to camp together, and she knows all of this as I confessed it to her many moons ago, so nothing here is a secret.)

So perhaps the reason I disdained the idea of being an advocate was because I felt like if I couldn’t be as amazing as her, then there wasn’t a point. No one would listen or pay attention to me. I’d never have the kind of platform she did.

Ah hahahahahaha…

Much akin to being jealous of the popular girl in high school, you really never know how things are going to turn out until everyone grows up.

Clare was in fact the inspiration for me to apply to JDRF’s Children’s Congress, because, hey, free trip to Washington D.C. to meet important officials and talk about your life? Sounds cool to me

But once I got there, an entire world of diabetes advocacy potential opened up for me. You see, I had a supremely easy time with diabetes growing up. Not in the diabetes management aspect of things (A1Cs were in the 8s, and I had the same ups and downs — literally — as everyone else) but my emotional struggles with diabetes were pretty pathetic. I had wonderful parents, wonderful friends, wonderful teachers and school staff who literally did whatever I told them I needed. No one was the Diabetes Police, and no one made fun of me for anything I had to do to manage my diabetes.

When I arrived in D.C. and I started listening to the stories of other kids who weren’t so lucky, I kind of felt terrible. It would have been easy for me to sit back and go, well, that’s not my problem. I don’t have those issues. But I realized that just because I had it easy did not mean that I was exempt from helping. In fact, it was all the more reason to help!

I also realized that I didn’t really understand that much that was going on in the diabetes world outside of my own day-to-day management. Islet cell transplants? Xenotransplantion? What-the-what? And so that’s how my first website, CureNow, started. I wanted to explain the complicated world of diabetes in plain ol’ English. And I’ve basically been doing that ever since.

Advocacy can be a scary world to get involved with, though. How do you start? What’s going to make a difference? If there are so many other amazing people who are traveling the world, does it really matter if little ol’ me does anything?

 

Start At Home: You do not need to go to national conferences or blogger summits to make a difference. The people who are easiest to reach are often those in your own backyard. Here are some ideas:

– Write an op-ed for your local newspaper about living with diabetes.

– Ask your local Lions Club or Junior League to speak at a meeting.

– Create a fundraiser in your hometown through your school or other civic organization.

– During your annual fundraising efforts for JDRF or ADA, leave information with those you solicit donations from.

– Use social media to share facts and information with your non-D circle.

Volunteer with Established Organizations: JDRF, ADA, DRI, TCOYD, DOC initiatives, your local camp or non-profit organization… all of these organizations live and die by their volunteers. There are always events and programs that need an extra hand or two to get going. Join a committee or volunteer for a board. Or just show up on the day of the Walk or gala to make sure everything goes swimmingly!

Talk To Those Who Ask: At some point, you are going to face a member of the Diabetes Police. They probably aren’t even trying to stop you from eating or doing whatever you plan… they’re just confused! Seize the opportunity to give a thorough (but polite!) answer as to why you can eat that. Sure, not everyone will be interested, but you never know when you’ll pique someone’s curiosity. Most people know more than one person with diabetes, but if they aren’t intimately involved in the care, they probably don’t know much about it. Take each question as an opportunity for some advocacy.

 

The amazing advocates you read about? They are no different than you. They have no magical powers , no secret weapons, no underground bunker with a butler named Alfred. They are normal people who had an idea and decided to do something about it. They went to meetings. They networked with others who are passionate about finding a cure. They sent emails, made phone calls, and asked questions.

Go for it. We’re right behind you.