Monthly Archives: April 2019

Eye Care as a Human Right.

April 30, 2019 – 10:11 am

I’ve alluded to this a lot, but since I’m probably the King of Burying the Lead, blogging edition, let me just share that I have a lot of doctor appointments to make and keep this year. A lot, covering so many things.

That includes seeing an ophthalmologist for a comprehensive eye exam. My appointment was last week.

The news was all good, mostly… no glaucoma, no sign of retinopathy or macular degeneration. My prescription changed just a bit, but I needed new eyeglasses anyway, so I’m not complaining.

It sucks that I live in America, where I have to pay a fortune for health care, devices, and drugs. But it’s great that I’m one of the lucky ones in America with coverage good enough to allow me to get to the eye doctor every year.

That’s one of the things about medical insurance, and the fight to make health care less expensive here. If it’s less expensive, it’s naturally more affordable for more people, and that is way less expensive to the government and its citizens than just relying on emergency room care when things get really bad.

That’s true for eye care. It’s true for diabetes management. It’s true for someone with heart disease, and it’s true for those going through depression and a host of other psychological issues.

From a patient point of view, denying coverage, denying care, and denying affordable access to the drugs we need denies us our right to exist on the same plane as someone not living with a chronic condition. And when we do that, we’re not only acting in a shameful way toward our own fellow man, we’re collectively paying more for the privilege to do so.

I still have many more appointments left this year. They’re almost all like this one: designed to check out one part of my body or another so I can detect (hopefully) small problems before I might need to solve larger ones.

Don’t we all deserve the same opportunity?

By StephenS | Posted in Healthcare | Tagged , | Comments (1)

What’s my Motivation?

April 25, 2019 – 10:22 am

Look, we all know diabetes can be hard. There are countless tasks we must perform to make our numbers look good at endo appointment time. Still more to do at or after endo appointment time.
 
 
Do I really have to list them here? Okay, I’ll list some of them:

– Check blood sugar

– If you’re an insulin user, bolus appropriately

– Stay active

– Get your eyes checked at least yearly

– Refill prescriptions and durable medical supplies

– Handle unexpected highs and lows as they occur, because they will occur, usually at an inopportune time. When is an opportune time for an unexpected high or low?

– Deal with insurance claims and denials and FSA or HSA reimbursements

– Oh yeah, live our everyday lives, interacting with family and friends in a manner that suggests that we have all of this shit together allll the time
 
 
Let’s think of this in an either/or sort of way: If you don’t have diabetes as a part of your life, you don’t have to be responsible for any of the above. If you do, you have the above as a nice starter list, but it’s not all you’ll have to do.

So as you go through your life, taking care of all of these things, day after day, every day, I think it’s understandable if you stop and wonder: What’s my motivation for doing this if I’m only going to have to keep doing it forever?

I mean, there’s the whole “we do it to stay alive” thing, which is the most important, and should never be overlooked. But beyond that, I think it’s a legitimate question. For me, there have been days when the repetitiveness of it all has become either all-consuming or overwhelming.

What do you do to stay motivated? What helps you get through those difficult days?

Often, I find myself fighting back the urge to give it any consideration at all, and I just plow ahead. That can be a recipe for disaster… read any number of articles on the link between diabetes and depression to see what I’m talking about.

But not thinking about it too much helps me deal with things when I need to, and not feel guilty about things when I let them slide a bit. In that way, this strategy may be more helpful than hurtful.

In the end though, I think what motivates you is what motivates you… whether it’s so you can feel better, so you can live longer, so you can help your loved one live their best life, so you can get a great big Grande Latte once you finish everything on your to-do list.

Your reason is the right reason for being motivated and staying motivated. We are too important, all of us, to forget that. Your worth is your motivation. That’s enough of a motivator all by itself.

By StephenS | Posted in Diabetes | Tagged , | Comments (1)

Update

April 23, 2019 – 10:11 am

It’s been a while since I’ve mentioned my experiences on my state’s Advisory Council on Health and Wellness. Here’s a quick update after a flurry of meetings, including our latest quarterly full council meeting:

I’m finally getting used to our quarterly full council and Diabetes Committee meetings. It takes some preparation, but also preparation at the right time, so I, along with my more-than-capable co-chair of the Diabetes Committee, can present the latest and greatest on what the committee is working on, but also explain why we’re working on what we’re working on.

As far as committee meetings go… that’s required even more involvement. Instead of the quarterly meetings we’re required to hold, we’ve committed to monthly meetings since beginning the ardent task of framing the state’s first comprehensive diabetes action plan.

The work is ongoing, but I’m finally starting to feel like we’re making progress, and that’s good. Hopefully, I’ll have more to tell as we start to pull the various parts of all this together.

I should mention that we’re all indebted to the various staffers at the Maryland Department of Health who have been working with us during this time. They have provided guidance, data when we need it, and a lot of patience as we navigate this process. This is their job, but they’re doing it at times that are not always normal office hours, and I admire their dedication.

One other part of my council duties that I probably haven’t mentioned before is my role as part of an ad hoc legislative committee. Our council is comprised of four committees (Diabetes, Heart Health, Arthritis, and Physical Fitness), and we each chose a representative for the legislative committee.

Maryland’s legislative session runs only from January until April. When bills were introduced in the House or Senate, if the Department of Health saw a potential role for the Advisory Council to weigh in with either support or opposition to a bill, it was sent to our committee for review. In very short order (usually 72 hours or less), we needed to read the bill, decide whether to support, oppose, or take no position on a bill, with written reasons that support our point of view.

One such piece of legislation was Senate Bill 410, which, among other things, would have eliminated co-pays for insulin and test strips for Marylanders insured under anything other than a high deductible insurance plan. Naturally, since people on HDHPs are the most negatively affected by climbing co-pays, it was unfortunate that they were left out of the bill.

But, it would have been a huge win for everyone else, so the council was overwhelmingly in support of it. I was even able to add some of the wording and data for our letter in support of the legislation, which may have been my proudest moment serving on the council so far.

Unfortunately, the bill didn’t make it from the Senate over to the House, and the bill is dead for this year. If it comes up again next year, I hope we can get it through to passage. Overall though, my work on the legislative committee has been instructive and fulfilling.

Finally, I want to remind anyone from my state that our council and committee meetings operate under laws that ensure that we have a free and open process while we perform our duties. You probably would think that attending a meeting would be boring, but you are welcome to attend. For the record, the next full meeting of the Maryland Advisory Council on Health and Wellness is on July 17 at 4:00 p.m. If you want to know more, just ask me.

And if you have an interest in something like this… if you want to serve others, be part of something bigger than yourself, then go for it. There’s nothing that qualifies me for this role, other than the fact that I’m a passionate advocate and I have a little experience with this sort of thing.

You likely have the same qualities, or even better ones. Your community could benefit from your interests, and your perspective. Service to the community is noble and important. As I’ve asked so many times here… Why not you?

By StephenS | Posted in Advocacy | Tagged , | Comments (0)

Have Some Fun

April 18, 2019 – 10:11 am

I came home from work the other night, walked the dog (like you do)… then, I went into the kitchen to see what I could do about dinner.

I should mention that I was finishing up a bad infusion site, and my blood sugar was over 200 mg/dL most of the day. In fact, I had skipped lunch because I couldn’t bring my number down and I didn’t want to go even higher. I was hungry. First, I performed the site change, and then I opened up the fridge.

I needed something that would fill me up, but not affect my blood sugar too much while I got the BGs sorted out.

I had part of a steak leftover from a couple of days earlier. And a brand new head of iceberg lettuce. I usually prefer romaine, or spinach, or just about anything other than iceberg, but there it was.

And suddenly, I thought: maybe I could try to make a wedge salad like the ones that became so popular about ten years ago. To be honest, whenever I think of a wedge salad, I think “easy salad”… how hard can a salad be if you don’t even chop the lettuce? Well, it really is that easy. Finally, I’m right about something.

I added green onion, a little shredded broccoli/carrot mixture, chopped walnut, and tomato. On top of that, the leftover steak and some feta cheese. A little crushed black pepper and greek salad dressing, and I was ready to go.

It was delicious.

Hey look, making a wedge salad is about as easy as it gets in the kitchen. The point isn’t that I did some chefy thing. The point is that I had fun doing it.

I took a ridiculously boring idea (salad) and enjoyed the idea of crafting something that I hadn’t tried before. It was easy, but it wasn’t boring.

That’s the point of cooking for me: use what you have, make it as well as you can, and enjoy the process. You’ll usually come up with something that’s good for you, is lower in calories, and is pleasant to your CGM trend line.

Do something in the kitchen you’ve never done. Have some fun. I guarantee you will love the process.

By StephenS | Posted in Recipes! | Tagged , | Comments (1)

What else can I do?

April 16, 2019 – 10:11 am

This is more than just a photo of my dog. This is from the home screen of my mobile phone.

That part in the middle of the screen, where you now see – – –, you would usually see a number from my continuous glucose monitor. When I took this screenshot, I had no number. About fifteen minutes later, the number was back.

There are a lot of reasons why I wouldn’t get a number from my Dexcom for a short time. The biggest reason this was happening last week is because I was wearing my sensor longer than I’ve ever worn one before. The reason for that is because I forgot to order new sensors in time to have a fresh supply when the one I was wearing gave out.

Brilliant, right? The thing is, sensor ordering isn’t one of those fun, sexy things you get to do when you live with diabetes. The real secret is, there aren’t any fun, sexy things you get to do when you live with diabetes, but you get to do a lot. Actually, you have to do a lot just to have the best life possible.

That includes ordering sensors on time. But you know, ordering sensors is just one thing. I also have three doctor visits I need to schedule, a full time job outside of diabetes, a few advocacy subjects to stay on top of, a new dog, insulin and reservoirs and infusion sets to order too.

The next time you hear someone talk about the burden of living with diabetes, try to hear it differently. The emphasis should be on living with diabetes. And it’s no walk in the park.

But… the sensors still needed to be ordered. In fact, they were ordered last week. It has been processed, and I asked for expedited shipping, because I love paying for my mistakes by paying extra to get my supplies in a hurry (not).

Someone not living with a chronic condition might miss phoning a friend on their birthday, or might forget to pick up something at the grocery store. Inconveniences, but easily rectifiable.

I rely on my Dexcom to help me stay alive. I rely on my health care team, which includes multiple doctors in multiple offices along with back office staff. I rely on my insulin pump. I rely on the diabetes community to keep me informed, and sometimes keep me laughing. All of these help me manage my diabetes better than ever before.

I’m kicking myself for waiting too long to order new sensors. In the meantime, I just have to do the best I can with what I have left, which last week meant dealing with a sensor working into its fourth week. What else can I do?

By StephenS | Posted in Diabetes | Tagged , | Comments (1)
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