Monthly Archives: May 2016

The sailing is not always so smooth.

I’m pretty matter-of-fact when it comes to managing my diabetes.

I try to find the best way to handle things I can, and then I just put my head down and do what needs to be done. No fanfare… just do it. There’s no reason for me to complain about what I have to do, though I completely understand when someone does. But I try to avoid that, because I still have to do these things to keep living a decent life.

Much to my dismay, a simple site change Monday night made me realize that sometimes, even I have difficulty with the day-to-day maintenance of diabetes.

For those of you not in the know, a site change is when the infusion site for my insulin pump is nearing the end of its life cycle. According to the U.S. FDA, that’s three days. According to me, it’s as long as the insulin in my reservoir holds out (around five days with a 300 unit reservoir, 3 1/2 to 4 days for a 200 unit reservoir).

Site changes are no big deal, until you realize you’re removing something that’s been attached to you, under your skin, for a few days, and replacing it with another thing that will be attached to another part of your body for a few days. If you’re me, you have to insert the cannula (the plastic tube through which the insulin will flow) using a 9 millimeter needle you have to voluntarily jab into your skin at a violent speed. You know, no big deal. You just have to do this every few days.

What I just described is (usually) not a huge event for me. After six-plus years of pumping, I’m pretty used to it. But for the first time in a long time, Monday was different.

I came home from work with less than 20 units left in my reservoir. My pump had been beeping about the low reservoir for a couple of hours already. At this point, I’ve known for days that I needed to do a site change at this time, and instead of doing the site change, I sat down and ate dinner. I also sat around after dinner. I watched the news, I checked my e-mail, I talked with The Great Spousal Unit. What I did not do was a site change.

Eventually, I had to do it. Now it’s nearing time for bed, and I don’t have enough insulin left to last through the night, and I finally resign myself to the fact that yes, this must be done now.

And I did the site change, but not without some grumbling and swearing and loud complaining because my first two tries at getting the cannula in failed. Looking back on it, I know I must have looked like a spoiled child throwing a temper tantrum. I was not a happy camper.

Just thinking about all this makes me feel guilty, because, hey, at least I have access to tools like this that afford me lots of flexibility in getting the one drug I cannot live without. On top of that, I know that through the lens of the Diabetes Online Community, many times it looks like we’re rock stars when it comes to tackling the tasks necessary to keep our A1cs as low as they can be.

If you look at it from either of those two points of view, you’re likely to say Suck it Up, dude. Deal With It. And you’d be right. I’m not looking for sympathy here. I’m really just trying to describe my experience and get it down in writing. And maybe find some answers.

What I do know right now is: often I am the rock star. And sometimes, like Monday, I’m not. Is it the same for you? Do you ever find yourself sailing along, then confronted with the notion that maybe things aren’t sailing along so smoothly?
 

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#dBlogWeek Wildcard Friday!

2016DBlogWeekBanner
Welcome to Diabetes Blog Week! Diabetes Blog Week is just like it sounds… diabetes bloggers all blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up,
CLICK HERE.

As always, thank you to Karen Graffeo, creator and curator of Diabetes Blog Week. It’s been another fantastic week of finding new blogs and getting my own writing mojo back. And it wouldn’t have happened without Karen’s wonderful idea seven years ago.

On our final day of #dBlogWeek, I’m throwing down the wild card… The Let’s Get Physical Wild Card.
 
 
Managing diabetes during exercise can be tricky, so share what works for you or your loved one with diabetes and maybe it can help someone else. What to do when you want to work out, but your blood sugar is lower or higher than you want? How do you cope with this? Or how do you manage gym days at school for your child with diabetes? How do you stay motivated to work out? Or how do you encourage your loved on with diabetes to get active? What is your favorite kind of exercise – conventional or non-conventional? (Let’s see how many types of exercise we can find!
 
 
Let’s start with that last thing– my favorite kind of exercise. Honestly, I would really love it if I could still be playing baseball. That would be fantastic. I would really like to still be playing slow-pitch softball too. But… not gonna happen. I can’t find a team I can join locally, for either of those.

But I can still participate in (probably) my second favorite activity: riding my bike.
Bike
Unfortunately, there haven’t been any sunny days like the one in the photo above available for me to actually ride my bike this spring. Not even one that fit into my schedule where I can get up and go. In fact, because of my knee surgery (and slow recovery) last year, and all the rain we’ve had here in Baltimore this year, I’ve had to rely on my trusty backup:
SpinBike
Hey, it still allows me to get the workout in until the rain lets up. Now, how do I deal with the workout with diabetes along for the ride? I have to remember a few things:

For starters, I have to check my glucose first. I don’t have an absolute number I must be at before I start my ride. It’s really based on how long it’s been since I’ve eaten, what I had to eat, and how long I plan to ride. In the interest of not dragging this post on forever, I’d say I’m looking for a number north of 150 mg/dL (8.3 mmol/L– is that the right non-US number?).

Then, I need to make sure all of my shtuff is close by. You know… meter, juice, glucose tabs if I have them, if not, candy or fruit. Also, and this is crucial: I dial down the insulin delivery on my pump through a temporary basal setting. Depending on my current BG level, anywhere from 25 percent to 50 percent of normal. Effing diabetes.

Of course, there are the non-diabetes things: water, towel, and my phone. The phone? I need it for the Pandora music streaming during the ride. I like 70s music. Almost all of it, but no Osmonds or Bay City Rollers or weak shtuff like that. Sometimes I’ll go for British Invasion music, or Motown.

Now I’m ready to take off. I don’t wear a CGM right now, so I have to be really cognizant of my focus during the workout, especially my cadence. If my pedal cadence won’t stay steady, then I know it’s probably time to check the BGs again. That’s my sign. I’m not one of the gifted PWD athletes out there who can check while riding, so I stop what I’m doing and check. No use wrecking the entire workout if I can resolve things quickly.

If I’m low, I’ll stop my pump completely, or disconnect from my site entirely. I’m going to take a shower after anyway. So I’ll sit and treat the low and check again. If it looks like I’m okay, I’ll start up again. Sometimes, after a low, if I start again, I might not go as long with the workout as I had intended. Effing diabetes.

But here’s the thing: Even if I have to cut it short, I’m still working out. I’m still doing something that makes me happy, even if it’s just for fifteen minutes or so.

I don’t care anymore about how slow I may go, or how long it takes me to reach my goal, or whether I experience bumps along the way, diabetes- or non-diabetes-related. For me, being able to work out is a gift, and I intend to use that gift as much as I can, as long as I can.

Kind of like sex. Which, if I’m being honest, really qualifies as my favorite workout, in case you were wondering. And if you were wondering about that, you should probably be working out right now!

How do you deal with diabetes and getting your workout on?
Find out how others do it by checking out the posts linked HERE.
 

It’s Thursday of #dBlogWeek. This is the post about The Healthcare Experience.

2016DBlogWeekBanner
Welcome to Diabetes Blog Week! Diabetes Blog Week is just like it sounds… diabetes bloggers all blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up,
CLICK HERE.

As always, thank you to Karen Graffeo, creator and curator of Diabetes Blog Week. She’s awesome.

It’s Thursday… today, we’re covering The Healthcare Experience.
 
 
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!
 
 
Today, I’m going with a suggestion from a Facebook friend whom I’ve never met, who would like me to talk about CGM coverage for Medicare recipients in the United States. They’re concerned that a recent story out at Insulin Nation, plus a couple others here and there, might be giving people the idea that Medicare coverage for continuous glucose monitors is a done deal, or a nearly done deal.

As much as I would like that to be true, the facts are that this is not true.

And that makes this issue similar to many issues when it comes to living with diabetes and getting the coverage for things that will help us live a better, healthier life.

You name it, insurers are doing their best to keep from covering it: the insulin of our choice, coverage to see a psychiatrist for our mental well being, coverage to see an orthopedist to look at frozen shoulder problems, and yes, Medicare CGM coverage.

Even when one patient wins a case, do you think that ends it? No… insurers are still going to try to appeal and get a legal authority somewhere who will agree with their point of view. Even when their point of view is not backed in science, or even recent science.

If I were to improve healthcare in this country, I would start by disassociating the budgetary (and for companies, profitability) concerns of every facet of managed care. The first question should always be, “what will help the patient the most?”. Only after that question has been answered should we begin to ask how expensive something truly is. And once we have determined how expensive the best treatment will be, we should commit ourselves to making it affordable for patients. Not if we can make it affordable; we should commit our resources and our best minds toward making it affordable. And accessible. For everyone.

When we dedicate ourselves to the idea that everyone deserves the best care, period, not the best care one can afford, we free ourselves from the burden of “how are we going to pay for it?” or “how can we get someone else to pay for it?”. It will happen. It will happen through grants for healthcare innovation, additional competition from insurers (not less, as some politicians are suggesting, unless they want to go single-payer-all-in), and through price controls. I still believe that the part of our government designed to protect the people should be bigger than the part that wants to help companies prosper. Companies never cured a soul.

Companies pursue mercenary agendas based on profitability. They will keep defending their right to do so. All I’m doing is defending my own right to manage my care with the tools I need to be successful. At a fair price, which, in case anyone is wondering, is a lot less than what I’m paying now.

So friends, don’t be fooled by the “Medicare might be covering CGM!” rhetoric you might read from time to time. Our issues are not going away until we collectively knock out every brick in the wall of managed, for-profit care that so many of us have run into during our lives with diabetes. Patients over profit, every time.
 

#dBlogWeek: Let’s discuss language and diabetes.

2016DBlogWeekBanner
Welcome to Diabetes Blog Week! Diabetes Blog Week is just like it sounds… diabetes bloggers all blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up,
CLICK HERE.

As always, thank you to Karen Graffeo, creator and curator of Diabetes Blog Week. She’s awesome.

On Wednesday of #dBlogWeek, we’re discussing Language and Diabetes:
 
 
There is an old saying that states “sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-udgemental language when speaking about or to People With Diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to ‘person with diabetes’ versus ‘diabetic’ or ‘checking blood sugar’ versus ‘testing’, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.
 
 
Listen all you diabetic-testers!!! You people-with-diabetes-blood-sugar-checkers really want to know how I feel???

I feel like I just don’t want to spend time explaining why the language I use is correct, and the language you use is not.

I am squarely in the People With Diabetes/Checking my BG camp. If I can, I try to find words that won’t hurt anyone. I mean, why not? On the other hand, if you feel married to the idea that you’re a diabetic tester, that’s okay too. But here’s the thing:

The minute you try to attack one of my friends who says something you don’t like, you just might get a fight from me. And if you try to win me over to your way of thinking, especially if you use words like “you agree with me, right?”, don’t be surprised if you hear crickets coming from the other side of the table.

Sometimes I say things that another person disagrees with. Sometimes another person says something I don’t like. Occasionally, I’ve been forced to change my viewpoint on something I was sure I was correct on from the outset. How many of us have been perfect 100 percent of every moment of our lives? Answer: Zero percent of us.

Experience has taught me that being kind, and considering how someone else might feel about something I say helps me to form my thoughts in ways that are inclusive and are non-stigmatizing and are non-judgemental. Doing so doesn’t cost me anything extra. And wow, it really gives me plenty of time to explain what I’m saying, rather than how I’m saying it.

How do your thoughts explain what you’re saying rather than how you’re saying it?
 

Diabetes Blog Week: The Other Half of Diabetes.

2016DBlogWeekBanner
Welcome to Diabetes Blog Week! Diabetes Blog Week is just like it sounds… diabetes bloggers all blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up,
CLICK HERE.

As always, thank you to Karen Graffeo, creator and curator of Diabetes Blog Week. She’s awesome.

It’s Tuesday. Today’s topic has us thinking about The Other Half of Diabetes:
 
 
We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras or ideas to share on getting out of a diabetes funk?
 
 
In the interest of being completely and brutally honest, I must confess this: I’m really not good at the mental aspect of living with diabetes.

What I’m really good at is ignoring things.

I have bad days, like everyoone else. I have my share of diabetes mishaps. Times when I forget to check before eating, or leave my meter a mile away in my truck, or forget to bolus. There are instances when I’ll get super frustrated with a high BG that just won’t come down. Instances when a low keeps me from being able to work out.

When I do go through those things, what do I do? Do I get frustrated and worry about the potential damage I may be doing to my body? Do I have to talk myself into caring about caring for myself again?

Well… no. I might get mad about it for a second or two. But then I go on with the rest of my life. Seriously, I do this all the time.

What I’m concerned about, though, is that I’m not processing the frustrations of diabetes quickly. I’m worried that I’m internalizing too many of the feelings that, if I just let them out once in a while, might do me some good. I’m worried about things building up inside, then releasing like a dam on a helpless valley, washing everything away in one fell swoop.

I have to also admit that I worry far more about how my coworkers and The Great Spousal Unit cope with my diabetes. There are people at work that care and empathize with what I go through living with a chronic condition. Maureen worries every time I leave the house, and sometimes I can really see what it’s doing to her internally. More than I can see what it’s doing to me.

So that brings me to the “Any tips, positive phrases, mantras or ideas to share on getting out of a diabetes funk?” part of the episode.

My number one tip/mantra/idea is Leave yesterday behind. The future is unwritten. It’s not that yesterday isn’t helpful as a reference, a “remember not to do that again” or “when I exercise, I need to make a checklist of the things I need to eat/do/prepare for” kind of thing. But I’m not hanging on to guilt or frustration over something that happened out of the blue. I guess I don’t want diabetes to take away any more of my happiness than it’s already taken.

I am also completely aware of the fact that like diabetes, my tip will not be helpful to everyone. So my second tip would be find what works best for you and go with it. Whatever it is, as long as it’s not hurting anyone else, if it allows you to be happier longer, I am all for it. Chase your happiness. When you get a chance at happiness, grab it with everything you have and never let it go.

And when these two ideas fail, don’t forget to reach out for help. Seeking support, advice, and a shoulder to lean on is actually a sign of strength, rather than what it feels like when we’re doing it. Be strong enough to ask for help when you need it. And strong enough to give help when someone else needs it.

Well… something that didn’t seem like a topic I could really get into wound up inspiring me after all. Looking for more inspiration? Check out the amazing Diabetes Blog Week posts on this very topic on THIS PAGE.
 

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