Walking A Mile

Easy-3They say that you really don’t know someone until you’ve walked a mile in their shoes. Well, I’ve never walked a mile in the shoes of someone who has type 2 diabetes or gestational diabetes or someone who was diagnosed with diabetes as an adult or any other variation of this dreadful disease. And there are a lot of variations.

When I saw the prompt for this month’s DSMA Blog Carnival (which I’m horribly remiss in responding to regularly), I was stumped:

Anything easy about living with your type of diabetes that isn’t easy for another type?

There are a few things about this that made me question whether or not I could even answer a question like this. First and foremost, I speak for my diabetes. Not yours. Or hers. Or that guy over there. Just me. And my perception of what is “easy” may not be so easy for someone else.

The second thing that got me thinking was that I don’t really know what is easy or hard for another type of diabetes because I don’t live with that disease. For example, I have a horrible gag reflex. I choke on aspirin. I had a hell of a time taking metformin a few years ago when I decided to see if I could help my insulin resistance. So to me, taking injections is easier than swallowing a pill.  Does that mean taking injections is easy? Not by a long shot (ha! pun!). But other people might think, Allison, it’s a freaking pill once a day. Get over yourself.

A few years ago, I had dinner with a friend of mine who has type 2 diabetes and she mentioned how her blood sugars affected not just what but when she could eat. She said if her blood sugar was high, she would have to delay a meal and often would go on a walk to bring it down. She couldn’t just pop a pill to lower her blood sugar. It took a lot more effort. I remember thinking that sounded terrible, because I just pressed a few buttons on my pump and that took care of business.

I suppose the flexibility to take insulin whenever I want is a perk of type 1 diabetes… or at least, a perk of someone who uses insulin. (And if there’s even such a thing as a perk with diabetes.) But using insulin comes with a whole host of things that are not easy. Pump failures. Bad insulin. Poor absorption. Miscalculating carbs and crashing or soaring. It’s really not that easy.

I can’t even talk about stigma, because the stigma against type 2 diabetes often trickles down to the rest of us who bear the title “diabetic.” I suppose there is less outright discrimination against me, because most people have a general concept that type 1 diabetes is not lifestyle related.

“That’s the one you’re born with, right?”

“That’s the really bad kind, right?”

“Should you really be eating that?”

I might not be discriminated against, but my ears are still bleeding.

On the surface you might think, “Well, type 1 PWDs can eat whatever they want,” but that mentality can end up being a lot more dangerous and counterproductive than you’d think. I don’t even want to think how many high blood sugars I’ve suffered because I thought “Well, I can just bolus for it” and then completely underestimated what I was eating. I might not have to suffer with people telling me that I “did it to myself” but I still have to listen to stupid, ignorant remarks and misguided advice from the Diabetes Police. And while I didn’t have to integrated diabetes into the already chaotic world of college, I still had diabetes in college and it still sucked, regardless of how long I’d had it.

But I will tell you what I do think is easy. I think it’s easy to think that you have it worse than someone else. We live in our own skin with our own experiences coloring our perceptions. We struggle to overcome the obstacles that diabetes puts in our way and because we are so intimately familiar with our own journey, we can feel each painful rock we have to step on in order to get where we want to go.

We are so focused on our own arduous path that we rarely look over to see if someone else needs help. We judge people based solely on a few sideways glances, never really looking to see what they’re working against.

I think it’s easy to think we have it worse than someone else. It’s much harder to swallow that belief, make ourselves vulnerable and ask if there is something we can do to serve other people.

DSMA April Carnival: Keeping Up With The Joneses

5229943Yikes! So this post ended up getting published early this morning even though, as you probably could tell, I hadn’t written anything yet! I thought I had just saved it but instead, I scheduled it for publishing! How embarrassing…

Anyway, I do want to talk about social media burnout. It’s the topic of this month’s DSMA Carnival and something that I think is really important. It’s not something that is isolated in the diabetes community. Regardless of what online community you belong to or if you even just use the Internet to keep up with friends and family, sometimes you just get tired of keeping track of so many people.

Social media has expanded my community beyond anything I could have imagined. I got more involved when I was in college because I hardly knew anyone with diabetes and I really wanted to share my experiences and learn from others. As this community has grown over the years — and Lord, has it grown! — it’s become harder and harder to keep up with everyone. While I’m so excited that people are finding their way into the community, it can put a lot of pressure on people to follow and keep up with everybody.

Something I discovered a long time ago was that this just isn’t realistic. I stopped putting the expectation on myself that I needed to follow everyone, friend everyone, and read everyone’s posts everyday. I wish I could, but that would leave little time for anything else. I love the diabetes community, but not at the expense of the rest of my life! I started forming my own mini-community, and I focus more on the people with whom I really click with. Some people might think that’s “cliquish” but I think it makes sense. If you have limited resources, you’re going to spend them on the people who really bring something special to your life.

This has been an enormous help in preventing social media burnout, because I no longer feel compelled to keep up with Jones. In the real world, keeping up with the Joneses usually means you’re spending a ton of money doing what the Joneses are doing. But on the Internet, keeping up with Joneses means spending a ton of time just knowing what the Joneses are doing!

My biggest piece of advice for dealing with social media burnout is to first identify whether or not you’re really getting something out of all the various people and organizations you follow. Which blogs do you consistently skim or wish you could “mark all as read”? Is there anyone on Facebook or Twitter that you don’t even recognize? It can be a little embarrassing to unfollow or unfriend, but I think it’s becoming more respected when people realize they need to pare down their online life.

Sometimes you don’t want to completely cut someone out of your life, which is why I find a certain amount of organization is helpful. Facebook has become a place where the people I’m friends with are people I actually know in person. Twitter is a bit more open, but I’ll be the first to admit that I don’t follow people just because they follow me. I have to be interested in what they’re saying, but I’m also more flexible and willing to follow people I don’t know personally. And finally, there are a blogs, which I’ve organized into different topics. Sometimes I just don’t feel like reading about diabetes, so I can save them for a time when I want to catch up on things.

The Diabetes Online Community should be a place where you feel refreshed and refueled in your life with diabetes, but that’s not always going to be the case. Sometimes it’s just a matter of stepping back into the rest of your life — especially after some heated controversy like the NY Times article — and sometimes it’s a matter of figuring out the best way to incorporate social media into your life. Social media can often spur comparisons between how we do something and how they do something. Social media can encourage growth, but it can also create unrealistic expectations. We need to know our own limits and how to be best take care of ourselves. Even if that means unfriending the Joneses.

 

This post is my April entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/04/april-dsma-blog-carnival-4/

DSMA September Carnival: Is There A Doctor In The Internet?

doctor-cartoonThe September DSMA blog carnival picks up from where the DSMA live chat left off at the AADE conference in August: assuming online interactions with HCP becomes a “mainstream” thing, what would you like those conversations to be about? The live chat took place with dozens of bloggers participating in the DSMA Live radio show while simultaneously the DSMA Twitter chat was taking place. Lots of interaction going on! I really enjoyed the experience, and what I said at that event still rings true for me.

Earlier this year, I was at a board meeting with my endocrinologist. Since we were “off the clock” I felt like I had more time to talk to her about things unrelated to me specifically as her patient, so I brought up social media. I asked her if she read or recommended social media blogs or sites to her patients. She knew that I was already involved in that area, and in fact, I’ve interviewed her a couple of times for stories, but I wasn’t sure the extent of what she talked about with other patients.

She told me that as a rule, she doesn’t read the blogs of people with diabetes. To her, that’s a private place where they can talk about their experiences and she doesn’t want them to feel like they might be judged by having a medical professional or their own doctor reading their work. She felt that it was a place for them to communicate specifically with other patients.

As for recommending blogs, she knew that there were a lot of good ones, but she felt that as a doctor, she couldn’t put her “stamp of approval” on anything that she didn’t have editorial control over. She said there were a lot of legal and ethical boundaries that would be crossed if they started specifically recommending a blog to patients that may or may not agree with their medical advice.

I definitely understood why they might not want to outwardly recommend blogs, because it can often be twisted. For instance, often times you’ll see a product mentioned by Dr. Oz and then all of a sudden their are advertisements saying that Dr. Oz endorses the product, which is not the case at all. So I can see why doctors would be less inclined to recommend a website or social network because if someone were to say something that was medically unsound, it could come back to haunt them.

I didn’t like so much her thoughts that doctors have no place reading the blogs of patients. I routinely tell people at conferences that I blog and I even made out business cards for educators and vendors that I met. Heck, I even stood up in front of a large audience of educators during one session and mentioned my blog (as an aside, my actual comment was about diabetes apps…). All I’m saying is that I’m not shy about having medical professionals reading my blog. I want them to see what the real lives of patients are like because I think a lot of doctors forget about the day to day struggles of integrating a very complex and mysterious disease into an already complex life!

I personally would welcome doctors, educators and nurses to comment on my blog if they had something to add or if they had a question for me, or an email if they felt like that would be a better area. However, I also understand wanting to give patients their privacy and space (very nice of them) and I also understand that keeping up with social media is quite time consuming. I think we all agree that our time is spread pretty thin and it’s difficult to keep up with all the blogs we enjoy reading. Just think about trying to do this while also seeing 30 patients every day, plus paper work and phone calls and referrals! I’m exhausted just thinking about it!

I’m not sure we’ve made enough progress where I can comment on what I would want our conversations to be about specifically. But in general I think I want any and all dialogue between patients and their providers to be one of open and honest communication. In whatever form that takes, whether it’s in the office or online, I hope that’s the basis for our exchanges. It’s the healthiest and the most productive, and yet all too often, it just doesn’t happen.

 

DSMA: The Impact of Diabetes

running_high_impact_image_title_io1x9_445x335The August prompt for the Diabetes Social Media Advocacy blog carnival is all about mental health and reducing the impact of the emotional toll in caring for diabetes. This is an incredibly important topic and something that most of us, in some way or another, have felt in our journey with diabetes.

When I was thinking about how I wanted to address this, the word that stuck out to me wasn’t emotional or toll or even diabetes. It was impact.

I recently started working at a local running store in town (in fact, today was my first day) but I have been interested in running for the past year, and “impact” definitely comes up a lot. The impact of running on the body, the impact of the ground on the joints, the impact of your foot, etc. They are all very important things to consider when running properly and getting fitted for the right shoes and supportive accessories, like shoe inserts.

For a lot of new runners, they just jump into running without the proper equipment. They might find a pair of old sneakers or maybe they just wasn’t something “cheap and easy” so they get something from Target or Sketchers or something. And they start running and they don’t really know how far or how long to run, so they might run a million miles before they are painfully injured, or they might realize how difficult running is right out the gate and they stop before they really give it their best effort.

I think this can be analogous to a life with diabetes.

Obviously we don’t have to wear special shoes for diabetes (although you can if you want). But you need proper education and proper support (from your running gear) to run well and reduce the impact on your body, and you also need proper education and support to reduce the impact diabetes will have on your mental health.

We get fitted with the right kind of shoes to lessen the impact that running will have on our bodies. There are a ton of different kinds of shoes, with orthotics and inserts to make it even better. I like to think of the diabetes community as our collection of shoes and orthotics. It’s not terribly sexy, but I think it’s true. There is no one “right” shoe, and I don’t think there’s one right way to get emotional support either.

Some people are going to dive right into the fast-paced Twitter, others might enjoy a more thoughtful blogging experience. Others will have an easier time with Facebook (especially if they are already on it), while others might want their diabetes support completely offline and choose to go to a local support group. Some people might find they get the most support from going to local expos and conferences, and others might be perfectly happy receiving the latest issue of Diabetic Living or Diabetes Forecast.

The point is, we’re all different. The way we can lesson the impact of diabetes in our lives will be different, and yet it is important to find something because diabetes will have an impact in your life. The gravity of the Earth and the gravity of diabetes cannot be avoided, but that doesn’t necessarily mean that what works for me will work for you. Trying things on and testing them out will let you know whether something is working and helping to stabilize you.

So the prompt asks specifically “what should a parent or PWD do to lessen the emotional impact of caring for diabetes?” and I honestly don’t know. I don’t think I could answer that. It’s like if someone asked me what shoe they should buy for running. There are so many things that influence the answer that it wouldn’t fair for me to just say one thing over another.

But what is true is that there is an impact. There is an impact to running and there is an impact to living with diabetes. You can’t escape it and you can’t ignore it. The only thing you can do is address it head on and figure out what is going to help you the most.

DSMA July Carnival: Testing, Testing

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It doesn’t take a genius to know test strip accuracy is important.

This month’s DSMA Blog Carnival is all about test strip accuracy and why it is important to me. The issue of test strip accuracy has recently made a resurgence in the DOC (not that it ever really went away), most notably in the form of Strip Safely, a grassroots advocacy group dedicated to pushing the FDA to require more stringent accuracy parameters for test strips.

To be honest, the fact we’re even having this discussion is kind of disgusting. It boggles the mind (which oddly gives me the mental image of those bobblehead dolls, but I digress…). The FDA, bless their hearts, have gone above and beyond the call of duty in keeping the Medtronic Minimed Veo out of the hands of American citizens because they think it might cause some issues with blood sugars, DKA and whathaveyou. They are afraid that if you have your insulin suspended for two hours and you’re not really low, you’ll have problems. The reason why you might not be low when the Medtronic CGM tells you it’s low is because of accuracy issues. So they know accuracy issues are a problem, but they don’t seem terribly interested in enforcing anything to make the situation better.

Allow me to let you in on a little secret: accuracy doesn’t just affect people who use CGMs. Accuracy affects everyone. It affects how much insulin you take. When the FDA says that being 20% off is okay, what they’re saying is that there is no difference between a 160 mg/dl and a 128 mg/dl or a 192 mg/dl. What they’re saying is there is no difference between a 300 mg/dl and a 240 mg/dl or a 360 mg/dl. Oh yes there is! In fact, there is an even greater chance of blood sugar issues, DKA and whathaveyou with test strip inaccuracy than you would have with the Veo.

This is not new news to anyone. We were talking about test strip accuracy at the very first Roche Diabetes Social Media Summit in… God, I don’t even know when it was, it was so long ago… ::looks it up::… 2009! For five years (and likely longer than that), we have been advocating for better test strips because it is guaranteed to make our lives with diabetes easier to manage. It won’t solve all the world’s problems, but it might make a few things better.

They say it costs too much money for test strips to be more accurate. We’d have to pay more than the boatload of money we already shell out. Do you know what costs more than test strips?

Kidney dialysis.

Congestive heart failure.

Death. Death definitely costs more than test strips.

Why is test strip accuracy so important to me and my fellow brothers-and-sisters in diabetes? Because there are a multitude of experiences that we would like to have, and kidney dialysis, congestive heart failure and death are not on the list.

DSMA June Carnival: On Choosing Diabetes Technology

This month’s DSMA Carnival is all about choosing technology. Earlier this month, I went through a run-down of my opinions of different insulin pumps and why I chose to ultimately go on the Omnipod (which is forthcoming). Instead of talking about how I choose my diabetes technology, I thought I’d give a brief run-down of important factors to consider when deciding on your medical devices.

First, I always think it’s important to be clear that nearly every insulin pump and glucose meter do the same thing. Insulin pumps pump insulin, glucose meters give you a blood sugar reading. The biggest difference isn’t so much in what it does, but in how it does it. This is just to say that I wouldn’t go tearing out your hair trying to decide what pump to use. Whatever pump you use will work for its intended purposes. It’s in the finer details that the decision is really made.

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Five Questions To Ask Yourself When Choosing a Diabetes Device

1) Is this something I want to look at everyday? 

Listen, as superficial as design and aesthetics are, you are wearing this thing all the time. I wear my insulin more than I wear anything else, including my wedding rings (because I don’t wear them to bed or to exercise). Do not under estimate the importance of how the pump looks. Meter looks are a little less important since you aren’t actually wearing it.

2) Do I like the user interface? 

I find it vital to touch and feel and play with each screen of an insulin pump. I refused to choose an insulin pump until I could see what they all looked like. Some are a lot easier to read, some are more intuitive. Menus are all laid out differently and while you can certainly get used to one, it’s always good to make sure that it’s something you feel comfortable using. This is a completely individual opinion. It’s like following a fashion trend. Just because it works for someone else does not mean it will work for you. You have to try it out for yourself to see if it fits.

3) Will this device work with other devices I already have?

Continuous glucose monitors, your glucose meter, your computer’s operating system (PC vs. Mac) can sometimes make or break a piece of technology. If connectivity is important to you, you want to make sure it will work with what you already have.

4) Can I afford this device?

Insurance companies sometimes favor certain meters over others, so it’s important before you sign up to anything that you get an idea of what will be covered and by how much. There’s no point in falling head over heels in love with an iBGStar if your insurance company just laughs at you.

5) Do I like it?

I think a lot of us can get caught up in the opinions of others when it comes to diabetes technology. We’re always ready to evangelize our favorite pump, meter, app, form of exercise, etc. And we’re also ready to lay the smack down on anything that we don’t like (you know it’s true).

I remember when I was in college, thinking about what I wanted to be “when I grew up,” my dad and I had a conversation about being a pharmaceutical sales rep. He said I could work for Minimed. It was definitely a possibility, as I really liked Minimed (at the time). But I knew I couldn’t. I’m really perfectly comfortable with people using or wearing whatever device they happen to like the most. I don’t really see huge advantages to any system. They all have things that are good. They are all missing things that I think would be brilliant.

One thing that excites me about becoming a Certified Diabetes Educator is helping people find out how to make diabetes devices work for them. I don’t want you to manage your diabetes like me. I want you to manage your diabetes like YOU. What do you like? What works? What is appealing? Diabetes is one of the most unappealing diseases on the block, but we are also really lucky in that we do have some say in the devices we use. Most diseases don’t have these kinds of options. I’d be hard-pressed to call us “consumers” in the same way that we consume Apple or Coke products, but you do have the ability — most of the time — to choose what you want.

So don’t listen to me.

DSMA May Carnival: Strengths and Weaknesses

Strengths-vs-WeaknessesI’m joining the DSMA for this month’s Blog Carnival! This month’s prompt is:

What do you consider to be your Diabetes Strengths?  What do you think are your Diabetes Weaknesses?

What a loaded question(s)!

Strengths:

I think my biggest strength is my positive attitude. I try to not let diabetes get me down. I don’t want it to have that kind of power over me. I don’t dwell on high blood sugars or low blood sugars, and if it’s something I don’t understand, I just move on. I know that diabetes is an incredibly convoluted and frustrating disease, and sometimes there just isn’t any rhyme or reason to it. I try to keep an level-headed perspective on diabetes because I think that if I wrapped myself up in every little detail or question, I would drive myself crazy.

Another strength I have is curiosity. By nature, I’m very curious (hello journalism degree!) and I think that curiosity has been very helpful in diabetes. I enjoy learning about it, whether it’s a new product or diabetes research or something that someone is doing to make life easier. Learning about diabetes has helped to demystify it a little bit and that makes it a little less scary. Obviously I still have worries and concerns about it, but an ancient Chinese warrior Sun Tzu taught that you should “know your enemy” and I think that’s very applicable to diabetes. Understanding diabetes helps me manage it better, and it also reminds me of when I need to let go.

Weaknesses:

Among my many weaknesses is my personal health habits. I tend to forget to test when I get distracted with work or school. I usually don’t bolus until the end of a meal. And for the longest time, I didn’t exercise. I’ve slowly gotten better over the years. I’m much better about testing and I exercise regularly, and I’ve started bolusing at the beginning of the meal. It’s still a work in progress, but I think my latest drop in A1C is a testament to the progress in those areas, although I’m still not very good!

Another weakness I have is in the area of food, which I suppose falls under health habits but this is a bit more specific. Most of the time, I think I can get away with eating whatever I want because I can “just bolus” for whatever I want. It led to other problems, like weight gain, because I let my ability to bolus influence my eating habits. Regardless of whether you can “just bolus” for something, that doesn’t mean you should eat it! But I absolutely hate being told no and self-restraint is a huge weakness.

What are your diabetes strengths and weaknesses? Anyone battle self-restraint issues?