Take a Look at My Future

A hot topic in the diabetes world is health care: how expensive it is to have a life, let alone remain upright; how we couldn’t get private insurance before the ACA was signed into law; how we still can’t get coverage now that ACA is law; the fire-laced hoops we jump through just to make sure we have have a semi-normal life without going bankrupt by a disease we didn’t want.

I don’t normally jump into advocacy beyond this blog and sharing the latest news on Facebook or Twitter. There are far more influential people with diabetes out there that people will listen to that there is no sense in me trying to add my thoughts to the mix, I think.

But no! That’s the problem! If there is anything I’m learning about this goofy election cycle circus, it’s that I do have a say and a voice, regardless how pint-sized it may be. So whether I have 100 readers or 100,000, someone might hear me and also want to help raise a voice as an advocate.

Here is the current dilemma. At some point in the future, I will retire and need to rely on Medicare for my health insurance needs. (This is all assuming that nothing changes in regard to health care and insurance in the next 30 years.) Medicare currently has a bidding program to determine which and what brands of durable medical equipment it will cover for seniors enrolled in the system. Durable medical equipment typically includes diabetes supplies like test strips, glucose meters, syringes, insulin pumps, etc. – items that help administer the care of a PWD. (Versus a prescription of insulin, which is required to keep a PWD alive.) Like any government agency I can think of, the competitive bidding program was established to find the required durable medical needs at the cheapest possible price, and then having all Medicare patients use those brands only, unless they wanted to pay out of pocket.

The problem arises when taking the cheap way out actually effects the patient’s livelihood, and sometimes can mean more hospital stays or deaths. Let’s take test strips as an example. A person with diabetes will rely on a test strip and glucose meter to give them an accurate picture of where their blood sugar stands at a given moment. Brand A, while more expensive, may have about a 15 point variance in accuracy. Brand B, a cheaper generic brand, may have a 30 to 45 point variance. Both brands are FDA approved. Let’s say my blood sugar is 70 mg/dl – which brand would I prefer to have test my blood sugar? The Centers for Medicare and Medicaid Services will argue that Brand B is acceptable. Because it’s cheaper! And saves us money! And the FDA says it’s okay!

Meanwhile, I’m wondering if I need glucose tablets or correction insulin.

Anyway, The Journal of the American Diabetes Association says that the bidding program is doing much more harm than good. (Source – Abstract. Source – Full Text [requires log in] / Other Links Here.) And really, hospital stays are typically more expensive than test strips, so I’m not sure what Medicare is actually saving. Based on these findings by ADA, PWDs are calling for a halt on the bidding program since it failed to meet standards in its test areas. In July, the program will roll out to more states and effect more Medicare patients with diabetes.

It’s already hard enough just to get my insulin pump supplies from Medtronic as a 30-something female with private insurance through her employer. Since Medicare’s coverage and ideas can trickle down into the private sector, what’s stopping my private insurance from implementing the same sort of game of health care roulette?

I have a fairly diverse readership since I cover a litany of topics. (I know, all you capsule wardrobe followers are like, what gives, woman?!) But I ask, please, hear my pint-sized voice just this once and help me take action. After all, this was, and is, still technically a blog about my life with diabetes. My very long life with diabetes.

SuspendStripWarning

DPAC (Diabetes Patient Advocacy Coalition) has made it SUPER simple to write to your legislators. Visit this clicky link to fill out one quick form about where you live and it generates letters to  your Senator, Assemblyperson, and local representative and send it all for you! OMG this is so simple. And I hate writing letters like this. The more voices your reps hear, the better.

Oh, maybe I should have posted this sooner, but, DPAC has a nifty infographic you can share/read/whatever. Consider this the reward for reading through this.

DPAC Infographic (PRNewsFoto/Diabetes Patient Advocacy Coal..)

DPAC Infographic (PRNewsFoto/Diabetes Patient Advocacy Coal..)

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GirlyGoGarter Review

This post has been sitting in Draft purgatory for almost a month. I should probably get on this.

GirlyGoGarter in Nude

First things, first. This is a review of the GirlyGoGarter. I wasn’t asked to do one in exchange for goods or services. I simply just wanted to share my experiences with it and how it worked for me. You don’t even get affiliate links in this one. Just enjoy.

So as an insulin pumper, I hate wearing dresses, skirts, and things without pockets. I’ve probably ranted about the lack of pockets in women’s fashion in previous blog posts. It makes ballroom dance costuming rather challenging, but I somehow make it work. The point is, a lot of fashion trends and styles tend to be avoided because I have this object tethered to me 24/7.

Now, I have options. I’ve gotten by with just an old iPod arm band secured around my thigh with the insulin pump clipped to it. Or, worst case, I clip it to my pants and wear a baggy sweater over it. This helps deter second glances, questions about if I’m a doctor and need to carry a pager, or the awkward silhouettes it creates. I also took to sewing mini pockets into dance pants in a pinch.

But I wanted a better solution. When I was pregnant with Bean, I loved wearing maxi skirts. They were totally comfy when I definitely wasn’t. But, the pump band around my leg became unwieldy with an extra 25-40 pounds in front of you. Especially, since the band had a tendency to slip.

A gal on one of my Diabetes boards posted a link to GirlyGoGarter (GGG) when another member had a similar question about pumps and dresses. Always looking for new solutions to my problem, I checked them out.

From their website:

The GirlyGoGarter® is a sexy, lacey garter made of two-way stretch microfiber with pockets that adheres to your upper thigh with latex-free patented GentleFlex™ Grippers.  There are two types of pockets on the GirlyGoGarter®: easy-access (on the outside, just within the lace) and lock-flap (on the inside, against your thigh). Both types of pockets keep your money, I.D., lip gloss, mobile phone, keys, passport and all of your essentials safe, secure and right at your fingertips.

Their website also lists off a variety of items you can store in said garter. Including everything from your purse basics, to an epipen or pacifier (yeah, I don’t know about that). The garter can hold up to 3 lbs. of your essentials on your leg, guys! You can even buy a custom flask to fit into the pockets! It also looks a lot cuter than my old iPod arm band and comes in several colors.

I decided to order one to try. Mind you, they aren’t cheap. (Around $40.) Keep in mind though – this is basically like paying for an evening bag to attach to your leg. Or in my case, making a safe haven for all of my robot parts. I ordered a nude color to start.

Shipping was rather quick – my Garter arrived within a week. However, when I opened the envelope, out popped a black Garter. Huh. I could have swore I ordered a nude one. (More on that later.)

Here are the basics:

You have one long piece of microfiber covered in the lace color of choice. There are two pocket options: the lace pocket and a pocket within the microfiber. (The latter option is good for things you don’t need constant access to.) On the interior is the patented Grippers referred to above. To secure it, there is some heavy duty velcro sewn on the end. The garters come in several sizes – this one is the smallest size.

So, I took it for a test drive.

For the record, GGG doesn’t actually recommend wearing tights with this thing. The Grippers work best with bare legs, or at the most, fishnets. However, it was January, and butt cold outside. I took my chances.

For the first test, I was sitting at a desk for about 80% of the day, so the garter didn’t have a chance to slip much. Would I dance with tights and this on? Probably not. Could you get away with a couple quick jaunts around the office and some tights? Definitely.

As the weather warmed up, I ventured out without tights, hoping to actually make this thing work for its money.

For the most part, this held up nicely. I kept Dex and my insulin pump on me while out and about, but didn’t have to carry a purse or worry about pockets. A roll of glucose tabs probably won’t fit, but a small roll of lifesavers, some hard candies, or another small low treatment of choice will more than likely fit.

Now about that incorrect color mentioned earlier. I didn’t mind the black garter. Maybe mommy brain was messing with me and I did indeed order this color. A few days after receiving my garter, I received an email from Libby, a customer service manager for Andy Paige – the creators of GGG. She let me know that there was a mistake with my order and the company indeed sent the wrong color. For my troubles, they were sending me a nude color garter, free of charge since it wasn’t right the first time. The second garter arrived about a week later. Kudos for excellent customer service follow through, Libby.

Verdict – Recommend. The garter alleviates the awkward protrusions from the insulin pump and holster, thus creating a sleeker line. And it works great if you want to be subtle or not feel more like a cyborg. And keeping the pump in the lace pocket makes for easy access.

Ignorance is Not Really Bliss

So hey… so much for getting back into blogging after DBlogWeek. Oh well. I’ve been busy buying baby things and reading and counting summersaults in my lower abdomen. But I figure I better check in.

I’ve become incredibly dependent on my Dexcom since becoming pregnant. Dex wakes me up in a timely manner for those middle of the night lows and probably saved me a lot of trouble in DKA-ville two weeks ago when my site went bad. (Got to see Labor and Delivery for the first time… but I don’t recommend doing that to see it sooner.)

Like most PWDs, I order my durable medical supplies from the a 3rd party distributor rather than the vendor itself. (Medtronic seems to be the exception to the rule, however.) So when I was taping on my last sensor in the box, I called my supplier to place a refill order. Supplier said no problem; we hang up the phone and I wait.

And wait. And wait.

A week passes and I don’t hear a peep from UPS, the supplier… nothing. So I call again before the holiday weekend and complain. The clerk apologizes, isn’t really sure what happened, makes sure I have a valid prescription, and sends my order through for approval again with an overnight delivery guarantee.

Holiday weekend comes and goes and nothing has been dropped on my doorstep by the time Tuesday afternoon rolls around. By this time, the tape on my two week+ old sensor has irritated my skin so bad that I’ve disconnected entirely. I call again. Different clerk takes my call and explains my order won’t go through because my doctor on file is located in Montana and I’m in California.

Wait, what?

I attempt to calmly explain that all they needed to do was pick up my order from March, which has the exact same information they need. The original prescription was authorized to give me a year’s worth of supplies, so what’s the problem. The clerk said she’d “leave notes” in my order. Sigh. I asked for a tracking number to be emailed me when the order was approved so I knew when it was done. Again… more notes.

Two more calls finally yield another promise to overnight the sensors to me on a Friday. This time, however, I did receive an email confirmation and tracking number. So I figured I’d be plugged in again very soon – which was great, because I was getting really sick of dropping into the 40s and not feeling a dang thing. (When the kid gets hungry, it eats all my food!) To counter my overnight lows, I woke up twice via alarm to test myself at my most common drop points. I was beginning to think how I survived 30 years without my CGM.

Saturday arrives and I check my tracking number, discovering the package has been delivered! Hooray! I run outside to discover an empty doorstep. Huh? Where are my sensors?

In the off chance that my sensors were delivered to my office building instead, how where they signed for and left at the “front desk” on a Saturday? The office building is closed and can only be accessed via key and UPS typically holds all packages until Monday.

On the phone with UPS now – discover the package was indeed delivered to my office building and signed for by someone I didn’t recognize. Great. Since I’m so desperate for my sensors by this point, I commute to my office. To my dismay, my package is no where to be found and none of the surrounding suites were open to even ask if someone maybe signed for the package and were holding it. So I reported the box lost and/or stolen with UPS but couldn’t get an investigation going until Monday morning.

I continued my weekend Dex-less and frustrated, especially since I saw more 40s and 30s than I wanted to. And when keeping your blood sugars in check is such a big deal as a pregnant woman, you seek comfort in seeing those straight lines and arrows on the Dex. There is only so much information to gain when checking your blood sugar via fingerstick every 2 hours. (Also – not efficient.)

Monday arrived and the package still wasn’t anywhere to be found. I needed to work off-site for the morning, so I alerted our admin to keep an eye out for UPS in case they dropped something by for me. I also got a call from UPS indicating they still had no idea where my package was.

Around 10 am, our admin sends me a text saying someone dropped by my package and it was on my desk. Was it UPS? No – it was dropped off by a woman in another suite who was working on Saturday and caught UPS as they were arriving, signed for the package and held it until today.

…Um.

Does anyone else see anything wrong with signing for a package that 1) doesn’t belong to you and 2) isn’t even going to your suite? Maybe not so much #1 in an office building, but still. Good samaritan or not – it would have saved me a lot of grief if the package was just held until Monday.

After all that madness, I’m finally plugged back in and feel better sleeping at night. Of course, today wasn’t without calibration errors and the three question marks of doom. But that seemed to be just misbehavior and not an indication of a bad sensor and site.

I guess from here on out, I need to order my sensors when I have two left in the box…

How Much Is Too Much Data?

I went to Sacramento’s version of TCOYD yesterday for the later part of the afternoon. (By the way, if there is one near you, I highly recommend going. It was only $20 and they feed you D-friendly catering with carb counts!) I was sitting in one of the forums on CGM technology and one of the questions asked stuck with me enough to break my blogging absence and write about it. (I promise… I have plenty to share… later.)

A CDE in the audience told the story of a patient who was diagnosed at the age of 8 and her parents put her on a Dexcom by the age of 10. From that point forward, the young D-ling obsesses over the spikes and valleys of her Dexcom graph; often sitting and waiting with a cup of juice in hand if her Dex showed a downward trend with a 120 mg/dl readout. “I know it’s coming!” the CDE repeated.

Panelists suggested the young patient wasn’t ready to have a CGM, especially if it was causing obsessive behavior. But I took to heart how many times I’ve checked my Dex in an hour while I was waiting for my high blood sugar to do something. Y’know, continue to elevate so I could justify a correction or see a downward trend so I can eat once more. And sometimes I become so obsessed with a stagnant high that I give up and correct anyway… which usually has detrimental results.

It’s very much like watching the Stock Exchange. If you’ve ever seen movies about Wall Street or watched brokers on the news shouting to “buy” or “sell” on the floor because people’s retirements are at stake… you know what I’m talking about. People can drive themselves nuts if they have a very aggressive portfolio to hopefully support their livelihood as an older adult. And then that fateful day comes when the market crashes and they lose everything. Gone. What now?

I can’t watch my portfolio… but I do study my Dex. Sometimes obsessively, and the consequences are a bit more extreme than losing your life savings. Especially now that my sugars have become more erratic.

On one hand, I’m lucky to have this technology at my fingertips. Last night, for example, Dex woke me up on 4 separate occasions for falling blood sugars. They were all legit… and sadly interrupted my already limited sleep. (Curse Daylight Saving Time!) But without Dex waking me up, would I have woken up myself? And when morning did come, I could see that this trend is becoming a regular occurrence, prompting me to reduce my carb ratio for my bedtime snack. (Never thought I’d ever see a 1:7.)

On the other, I find myself clutching my Dex for answers and finding frustration in the stable arrows. Yes – trending up or down arrows can mean trouble too, but those stable, do nothing, apathetic arrows really get to me. And I will hit that power button once… twice… four times… in one hour. Just waiting for it to do something. Am I really still 63 mg/dl and holding? Should I test AGAIN and treat? Or – it’s been two hours and I’m still holding steady at 180? Why won’t you start coming down?

So which is better? Is ignorance really bliss, leaving us powerless to our body’s trends? Or are we to take in as much data to educate ourselves, but while clutching a cup of juice and waiting?

PS: I did have a lot of fun at the conference. I got to meet Kerri, Chris, and Heather. And then listened to Manny and Adam (along with Kerri) give a real good push for the DOC and digital technology for diabetes. Way to go, y’all. And based upon all the photos that were taken of them, they are quite the celebrities. 🙂

Medtronic: It’s Not You, It’s Me.

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Breaking up is never easy. But I have to say “so long” to my Medtronic CGM.

I took the plunge. Paperwork for a new Dexcom G4 CGM sensor system has been submitted to my doctor for approval.

I know – why not wait and see if you can just get the Medtronic Enlite system in February? Especially since you just ordered 3 months of Sof-Sensors… (I altered it today so that I just get 1 box while I wait for my new system to be approved.)

Look – I really wanted to like my Medtronic system. I gave it almost a year, and apparently the warranty only covers it for 6 months. (So – if I start seeing issues with it, I need to buy a brand new system anyway.) And I know my doc will be slightly disappointed that I won’t be using Carelink anymore. (I can’t really anymore anyway because of my computer issues.) But I can’t keep relying on the “direction of the sensor line, not the number in the sensor” if the sensor line doesn’t have a correct projected output.

Too many times, I’ve had a flat line sensor reading for HOURS, just under my threshold, only to discover I’ve been hanging out in the 250s for those hours. Or the double down arrows, dropping into the 50s, when I’m sitting comfortably in the 150s. (And rising.)

That kind of inaccuracy makes me really nervous when it comes to SHUTTING MY PUMP OFF IF I MISS AN ALARM! I’ve been woken up by many-a low alarm in the middle of the night. They are generally legit, but not always. So if my sensor is having a rough time, drops me to under 70 while I’m asleep when I’m really not… yeah, no.

Sure – Dexcom has its issues too. (They all do… we’re trying to re-create the functions of a dead organ with our best guestimates.) But, I need to try something else. For everyone’s sake.

I can’t draw straight lines with rulers

My CGM can, however,

Just under my high-alarm threshold. For the last three days.

For reasons all too familiar for the female PWDs, I haven’t been running my best and it’s starting to wear on me. It got to a point that I changed my infusion set at 3 am after an additional over-correction that didn’t work 2 hours earlier, a 135%  overnight basal rate for three hours, plus an injection of the same correction I administered with the pump.

I woke up 37 mg/dl. But – at least I woke up!

I probably shouldn’t make wild judgements at 3 am… but I was getting up every 2 hours to clear a high alarm that wasn’t budging and I wanted to sleep. And when there wasn’t a high alarm, I was checking my CGM to see if my correction(s) were working every 5 minutes so I really wasn’t sleeping anyway.

The site change may have been helpful because I managed to get a 90 at around lunch time. But my mornings are still incredibly resistant to all drugs. Maybe this is my body’s not so subtle way of telling me to find something different for breakfast.

A Missing Link

31vxY3W6QTL._SL500_SL160_Well, I’ve waited long enough I guess. I finally broke down and bought a data cable for my OneTouch UltraLink meter so I can sync my readings to Carelink. This comes after the half hour conversation with my CDE who couldn’t, again, pinpoint any patterns to fix based on my (slightly inaccurate) CGM readings alone. Since I test myself around 15-20 times a day, I can’t manually enter all of those readings into my pump… especially during a low. (And I can’t wirelessly sync my meter to my Paradigm, because it’ll want to calibrate.) So she felt that my CGM wasn’t telling her the whole picture. (Obviously!)

So I bit the bullet and dropped $40++ on a glorified USB cable. (I guess there is software to go with it… which is dumb, but the Carelink site still runs on an old version of Java, so I guess it comes with the territory.)

It’s not a perfect solution, because the pump and glucose meters won’t combine results for my CDE to download… but it beats having to drop into my doctor’s office every week.

I also get to pick a week to write down everything I consume and my reasons for giving the insulin dosage that I did.

I also purchased lancets, on my own, for the first time ever. They’ve always been donated to me or I’ve never gone through them enough to purchase, or they came with a freebie meter. But I was only given 10 Delica lancets and I didn’t install my remaining new one properly (i.e. I bent it in half).

In Time

Time is a funny thing.

If there is something fun planned for later in the day, time seems to crawl, making the day seem extremely long. This also applies if there isn’t much to do. And when we have too much to do, there doesn’t seem to be enough hours in the day. We are simultaneously encouraged to “live in the moment,” “take time to smell the roses and enjoy,” and “get somewhere yesterday.” Our morning alarms keep us on track as well as provide a hindrance to something more important, like sleep. We are also reminded that we have a finite amount of time to make something great of ourselves, so don’t waste it by being anything less.

As a PWD, time is also of the essence! It’s recommended that we change our infusion sets every three days and our sensors every six. Our insulin, once opened, only lasts 30 days, but its effectiveness is dependent on the elements, and we discover this over time with high and other erratic blood sugar results.

We are advised to wait 15 minutes after treating a low with fast acting carbs, which can feel like an eternity. And we spend another two hours (or two days) reconciling the inevitable rebound from said low blood sugar. But we can’t over-correct that high blood sugar because our insulin has an active peak time of anywhere between 2 to 6 hours. So that 300 mg/dl is just going to have to wait, isn’t it? (It doesn’t – rage bolus away.)

Our blood glucose meters have gone from taking 2 and a half minutes for a result to 5 seconds or less. Yet we still wonder if the number it pops out is accurate enough to dose a meal we should have bolused for 20 minutes ago.

We have the technology to have our sugars tested every 5 to 15 minutes, but we need to calibrate the technology every 6 to 12 hours to maintain accuracy. Nevermind that we can only calibrate three hours after a meal, when a blood sugar is stable, and when there is little active insulin in the system. So we spend our time planning our calibrations and smack ourselves when we miss the perfect opportunity to do so by about 15 minutes. We also need time to change out sets, sensors, faulty insulin vials, lancets, test and re-test when we don’t like the result… all while being told that there is too much available out there to make diabetes more convenient and we have no excuse to not live our lives like a “normal person” would… except when we try and our A1Cs reflect that.

We spend hours, days, and months fighting with insurance companies to approve the care to give us more time on earth, yet they take their sweet time figuring out if they want to pay for it.

We take risks with time, guessing that 18 units left in the pump will get us through a 10 hour work day… until your co-worker brings in cupcakes. Damn. Let’s not forget about the time and effort required to have a “quick slice of pizza.” Spouse ordered Chinese food on a whim? You’ll pay for convenience later. Or explain, for the third time, why you just can’t partake in it.

We get told that our time will be shortened if we don’t take care of ourselves. That diabetes kills. Yet we see other T1Ds living well into their 90s, which means they began life as a PWD on some of the earliest technology and medical advances available. (Which wasn’t much – but they still survived.) Maybe time really was on their side. Then we laugh half-heartedly at how many times we’ve been told there will be a “cure” in 5 to 10 years, yet wonder if there will one day be any truth to that statement.

We try to manage our time to plan for possible spikes from high-fat meals, over-correction crashes, exercise fall-out, travel, stress, sickness, and well… breathing. But sometimes, even the most neurotic planner can’t expect to time doses exactly to accommodate whatever bricks are thrown at your ideal CGM flatline.

And if we spend too much time thinking about the time it takes to try and be healthy, we kind of go crazy. So we ask for the support of others who advise us to take just one day at a time.

 

 

[Alright, alright, fine… I’ll swim back to the shallow end of the pool next time… ha!]