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.

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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..)

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!]

Actually NPH

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6.0% A1C? Challenge Accepted!

This post is inspired by a conversation I had on Facebook with a friend of mine. I posted a video of the fabulous display of awesomeness that was the opening number of the 2013 Tony Awards, featuring host Neil Patrick Harris. Others noticed and also posted praise about how fantastic NPH is. Including myself. One friend commented that she wasn’t sure why I’d be posting that NPH, the insulin, is awesome and required a second glance because I was the one posting it. I clarified and said yes, Neil is awesome… NPH… not so much.

Here’s why. I spent most of the 80s on a Regular/NPH combo cocktail that’d make Barney Stinson blush. Much to the chagrin of my parents and their many-a late night checks and hypo recoveries, this was my only option at the time to keep me alive. (Well… I guess there was 70/30, but who the hell willingly dabbled with that?) NPH is a long acting insulin that, when combined with Regular insulin (yes… that’s a brand name kids because it’s just regular pancreas juice [Thanks Scott]) could act as a replacement for the basals and boluses that we would get from a functioning pancreas and what we see with insulin pump technology today.

Or… at least it tried.

NPH is tricky. It could start working any time between 1 and 4 hours after taking it, peak anywhere between 6 and 10 hours, and be gone from the system between 10 and 14 hours. I usually took two doses of this madness in the morning and in the evening before bed. My hypos were legen… wait 6-10 hours for it… dary. But for some reason, shooting a combined dosage of these two insulins seemed like a great idea at the time. (I mean, what 10 year old wouldn’t want to see 30 units of some cloudy substance get shot into their leg each morning.)

Finally, my docs were like, wait! We have Lente now! (Which was clearly an even crappier idea, but again… no other options.)

Am I thankful that NPH exists? Absolutely! Do I wish it on anyone’s life? Hell no. There was probably a reason that my average A1C as a child was 6.3% and it wasn’t for any good ones.

But I always have to take a second look on Twitter now days… because NPH clearly means something completely different to me and other PWDs.

Oh My Lantus…

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My pharmacy’s EXACT count of a 30-day supply of syringes. Those cheap bastards.

 

Normally, I’m an advocate for taking “vacations” from the insulin pumps and now, CGM every now and then. Being tethered to something 24/7 can feel daunting and a bit draining after a while. And if the resources present itself, going on shots for a little bit probably won’t hurt thee ol’ A1C much.

I take it all back.

I’ve been back on Lantus for 2 days now and I really want my pump back. I know that the Lantus will work out better for me over the weekend, but shit, I’m having a rough time.

My CDE recommended a Lantus dosage similar to my TDB (total daily basal) amount. I am on over 14 units of basal per day, but of course it’s not a nice neat number for my syringes. I took 14 units back in January when my pump fried unexpectedly and it was manageable. But since I’ve bumped up my rates a bit on my pump, CDE suggested heading up to 15 units of Lantus for the days I wasn’t as active and then dropping to 14 on my show dates.

I tried 14 units on my first day and it was okay. A few 70s here and there, but I think mostly because I was over-doing my meal injections. I figured I could bump up slightly to about 14.5-ish units so I could have more support throughout the day. (Still saw some post meal spikes and stays after dinner.)

I head to sleep with a 91 mg/dl and a small snack in my stomach. I was already coming down from a correction I had made at 9 pm, but my snack made my BG rise to 130 mg/dl, so I gave a conservative injection to cover most of the snack I ate.

Some time during the middle of the night, my fight or flight instinct kicked in and I bounced into the kitchen to check myself. Ah, shoot. Okay – guess I took too much for that snack. I feel – eh – maybe in the high 50s. Extremely hungry. Spots forming in my vision. But, for the most part, coherent enough to test and treat.

BG meter: 28 mg/dl

Me: Wait, what? How am I still standing? Oh… hey, juice now.

Hot damn, really? 28? The sad part about it is that I really didn’t want to eat anything. I had my juice, waited, had a graham cracker, waited, had a small glass of milk because I was really thirsty. Continued to check every 10 minutes and finally felt safe heading to bed with a BG of 72. Woke up at around 6:00 with a 188 mg/dl.

I’m happy I was able to treat. I’m also really happy I was able to function out of bed without the aid of my hubs. (Hasn’t needed to happen yet.) And REALLY happy I didn’t wake up with a morning BG of over 300. (Has happened before.)

So – now I’m trying to figure my culprit. Did I stack too many humalog doses? Did I stack my Lantus? Was it a combo of everything? Was my pancreas really upset that I self-tanned again and this was payback? (No – not really. But at least I would have looked good for the paramedics?)

I’m also just having lows all the damn time now, mostly because I can’t do math and keep track of time. And it’s really rough not having those middle of the night alarms, even though I love to hate them. It’s fine. It’s only a few more days of this madness.

Let the Sky Fall

It's stuck in my head, so it's the title of the blog.

It’s stuck in my head, so it’s the title of the blog.

Blah. So busy. Haven’t even had time to read up on my CGM and I could really use its wisdom right now. Particularly at dinner; my current sticking point.

It is the same deal. I lower my ratio to 1:6 and I’m 300+ 3 hours later. I bump up my ratio to 1:5 and I flatline two hours later. I can’t remember if I’ve tried a 1:5.5 yet, but I was going to just for funsies tomorrow since I wasn’t heading out to dance until later. (Silly knee injury keeping me out of technique class.)

All in all, maybe I haven’t really given the lower ratio a fighting chance. The last couple times I’ve tried the 1:6, I’ve experimented with desserts, sushi, and other fine dining, thus resulting in the ridiculous spikes at 8 pm. Last Friday, I tried it again, only to indulge in vegetarian pizza and have my infusion set canula bend to a 45 degree angle some time during the evening. (Double whammy.) So I really can’t count those as my control tests… well, because they aren’t the norm.

But I really hate those 300s and the feeling of hopelessness when you see everyone chowing down and dancing up a storm and I’m left feeling like ass. (And really thirsty.) Do you keep correcting? Do you wait it out? Because what if those corrections all come crashing down on you at once. Kind of like it did tonight.

No amount of Girl Scout cookies could make my blood sugars get back to normal this evening, so I started my dance lesson as any PWD experiencing hypoglycemia would: completely incomprehensible and unable to turn. (Wait, isn’t that all the time? <shhh!>)

This odd turn of events turned into a fantastic opportunity for my instructor to clean up some choreography for our routine because it allowed me to sit there and shake quietly back into Normalland, mostly catching everything that was being explained. (Kerry and Co. refer to something similar – the D’Ambien experience: One of those middle of the night lows where you can’t remember what you ate or drank, or how much, as well as any conversations you had. Except I’m not asleep during my lessons. But same feeling. Yeah?)

Either my instructor was feeling particularly empathetic or saw the space cadet look on my face and queried: “So from what I’ve been observing, reading, and so forth, the real problem is patience? You give all this insulin to correct only to have it come falling down on you later… It’s like a college student experiencing drinking for the first time and wonders why he isn’t drunk immediately after taking the first shot, so he has another and another…”

Right??? My CDE will be very excited to hear that SOMEONE is listening. It just doesn’t happen to be me.

So what do I do now? Do I give the 1:6 another try, but with a less risky meal? Do I experiment with different ratios for different types of foods because sushi might require a 1:4, but a steak and veggie dinner might only need a 1:6? Because that’s totally convenient…

But I have T1D… who said this was convenient? <laughs>

When it rains, it pours.

Melting Confidence

The hubs and I celebrated Valentine’s Day early because 1) crowds and prices are horrible on the 14th and 2) I’ve got another swing convention that starts up this Thursday.

Melting Pot is a chain of fondue restaurants. We ordered the four course meal, which included a cheese appetizer, a salad, meats for the entree, and of course, chocolate fondue. I’ve been running so well this week that I didn’t want to spoil it by eating a heavy meal. But we’ve been wanting to go back here on our own for a while so I figured what’s one night? I diligently avoided refined carbs until the final course. (So not a ton of bread, no potatoes, only fruits and veggies and meats.)

The waitress brings out the chocolate fondue menu. Conversation goes like this:

Her: “Here are the chocolate fondue selections. Let me know if you have any questions.”

Me, half joking: “I wish you had a sugar free version.”

Her: “Well that wouldn’t be any fun, now would it?”

Me: “………….”

To give her credit, she had no idea who she was dealing with. And if you walk into a fondue place that specializes in chocolate fondue, you should kind of expect that sort of response.

But she could have at least humored me a little bit, no?

Speaking of Valentine’s Day… have you donated to Spare a Rose yet?

The Headache that is Health Insurance

PWDs are very familiar with and all-too-aware of the “joys” of health insurance. (The expenses, the hassle, the constant fear of being denied…) I had my own mini panic attack over the last month and am curious what others think the solution is. No – this isn’t going to be an Obamacare praise/hate post. Though, I am excited I will have the flexibility to shop for different insurance and not be denied… or if I want to be a stay at home mom next year, or a part time worker, I don’t have to worry about health insurance for myself come 2014… but I digress…

Anyway, it was time to order my pump supplies from Minimed; the same pump supplier I’ve had for the last 6 years. I recently changed my insurance because of my new job. New hospital, and new doctors. But I’m ordering the same prescriptions. Since I was getting close to opening my last boxes of reservoirs and infusion sets, I called early upon the recommendation of my CDE. Mostly because Minimed had to send the paperwork to the doctors, the doctors sign it and fax it back, and Minimed sends your order.

Since my insurance plan has a hefty deductible that resets at the beginning of the year, I decide to only order one more box of each because I will have to pay full price for everything. (And I didn’t want that giant expense at Christmas time to hit my bank account… only to have to cover it again next year.)

I called shortly after Thanksgiving.

My pump supplies should be here next Friday.

What happened in between? About 3 hours of phone calls back and forth to Minimed, my doctor’s office, my insurance company, and my CDE. Of the 5 Minimed reps I spoke with, no one had consistent information or requests. Only one of them really wanted to help me (the gal who finally overrode my restrictions for my items to ship.)

First I was told that I the authorizations from my insurance (my doctors) hadn’t been received yet. My docs all told me they were faxed on December 3rd.

Then I was told, that even though I’d been a pump user and was simply needing a supply order, I needed to send Minimed 60 days of blood sugar readings, a copy of my recent A1C, and doctor’s notes from the past two months. (I’ve only been on my new insurance for two months, mind you.) I found this to be a bit invasive for a re-order, so the CS rep said, oh wait, there is a conflict on our end; we’ll take care of it, don’t worry. In the meantime, my CDE says “no, why do you need to give them all this? You just need us to send this in, etc…”

So I wait a week and I hear nothing. Called back and speak to both a CS rep and a floor supervisor that says I still need all of these blood sugar results and that my insurance needed to sign the authorization. I cave and send in some really crappy sugar results (which I had, thanks to my Diabetes App) and a screen shot of my most recent labs. I don’t have doctor’s notes, which I think are a ridiculous request, but whatever. I call my doctor’s office back and tell them to send the authorizations again along with all of this other fun stuff. My CDE gets on the phone with Minimed herself and speaks to someone who tells her that the blood sugar thing is all a big misunderstanding and she re-faxed her copy of the authorization.

You’d think we’d be good by now. Nope. I call again on Friday after the floor supervisor emails me on Thursday to tell me that the insurance authorization still hadn’t been received yet, even though we faxed them directly to her. (Seriously? How many fax machines do you own???) I’m thinking that I’m not going to get this order by the end of the year anyway, so I might as well cancel it and just wait until January to push through a larger order. According to this CS rep, my order is “now in review” but has been red flagged because the quantity ordered doesn’t match the quantity approved. (Huh?) And says that I could cancel my order, but I’ll be in the same conundrum come 2013 because I will have stopped the insurance review process. Gahhhhhhh!!!! So I agree to keep the order standing and think about it for the rest of the afternoon. (What if they deny my order? Can they deny my order? I’m going to run out of supplies before they figure it out.)

I call back again later that afternoon and speak with Anita, who actually DID something about it. I asked if there was something I could do to make their lives easier (ha. ha. ha.) and if I needed to order, what I assumed, was a three month supply of my shit, then I’d bite the bullet and pay. I just wanted my supplies and I’ve been on the phone with you people for the last month and nothing is happening. So Anita starts looking through my account in silence, then puts me on hold. I’m on hold for 15 minutes. (And I really need to go grocery shopping.) She pops back on the line saying she’s trying to override my order with a supervisor. Oh – action! Good – I will stay on hold for the next hour if I have to.

Luckily, it’s only for another 15 minutes. She comes back online and says that my insurance authorization was received, but it wasn’t linked to my account. (Papertrail fail!) It’s been approved and should ship in 3 business days (Huzzah!) However, my authorization only covered one box of supplies at a time. (??????) Naturally, I ask that since it seems to take forever to get supplies ordered now, when should I call to order. So she puts me on an auto-fill system which ships my supplies automatically and then she alters the date of processing to make sure there is no lapse in my supplies. Thank you, Anita!

I’m not sure if I just got unlucky with a slew of non-customer service people, or if this is just the state of health insurance today. So I’m kind of anxious to see what changes when EVERYBODY has insurance.

Things They Don’t Tell You…

So here is an info post for those of you who are recently diagnosed or are making strides to clean up your act.

The docs always tell you upon diagnosis what you need to survive: your meds, your test strips and meter, and a way of taking your meds. Maybe a log book. And some fast acting glucose.

I’m here to tell you about all the stuff that really comes in handy, but docs don’t always tell you to invest in, either because they forget, or maybe you’ll figure it out on your own.

1) Measuring cups, spoons, and a scale

Are you counting carbs down to an exact science? Then you’ll need these. A cup of steamed white rice is somewhere around 45 grams of carbs. So maybe you just want half? Measure it. Take it from me. I can’t “eyeball” anything worth beans and I’ve had this for 30+ years.

It’s especially tricky when your serving size is measured in grams. (See scale suggestion.)

2) Storage space

I currently have my supplies in two locations. The hall closet and my bedroom closet. A shelf in each is occupied, mostly because I get three month supplies of everything. And you can’t forget the fridge for your unopened insulin. Mine sits on the door where the butter and eggs should be.

3) A sharps container

If you are on shots, throwing your used syringes in the trash is generally frowned upon… and in most places probably illegal. My family used have a device that would crop the needles off before dispensing them. But be warned: these buggers are small and expensive. And you’ll probably need many of them.

4) A fanny pack

Don’t hate. I still have a black one. I don’t actually wear it though. I use it to pack my supplies in when I travel. It has so many pockets and it was freakin’ cheap. Yeah – I could get something fancy pants on Etsy, but why? It’s just going to stay in my luggage all day.

Some athletes will find them useful for carrying their meters on bike rides or runs. (I never did, but if it works for you…)

5) Pump accessories

Pumps come with basic supplies to make them function for you. But that doesn’t make them any more convenient. My pump is “skinned” or stickered with a fun design that exposes the important information and buttons only. I have two holsters. I have a leg band and stomach band. I really wish I had a remote control.

6) The Calorie King book

This was one of the most useful items I had when I first became a pumper. (Now I just use an app, but some people like books.) It has calorie, fat, and carb counts for just about everything. It has to be updated every year, so be aware that you can also just Google the website in a pinch. Especially handy when you aren’t sure how to carb count that epic restaurant salad.

7) 4 Oz Juice cups

So, if you are like me and like to consume the fridge when a low blood sugar shows up, control the portions BEFORE you pour. I found that if I snagged an 8-10 oz glass from the cupboard, I poured myself a whopping 33 – 40 grams of carbs to treat a low. Not good. So I recently found 4 oz plastic cups at my local supermarket. Boom. 15-20 fast acting carbs. (Though, they are way easier to try and chug, so go easy.)

8) Smaller plates

Maybe it’s a psychological thing. But if I have a giant buffet plate, I want to fill it edge to edge. And now I’ve got all this food in front of me that I’m not sure how to carb count. So we have luncheon plates, which are significantly smaller and we use for everyday meals. So much easier.

9) A mobile app

I currently use one to keep blood sugar and carb logs. It’s hit or miss sometimes, but works much better for me than toting around a paper log book. (Or doing nothing at all!) My specific app allows you to graph your sugars so you can see your progress over the week, month, and year. There are many out there for all devices, with various price points and features. (My specific one is called Diabetes App – located in the App Store.)

10) Resilience and Patience

Hey, so, you were running really really well for the last day and a half and suddenly your blood sugars are over 250 for no apparent reason. Or maybe you just wanted that slice of cake. Or you skipped your work out. Oops. Oh well. Treat the high, carb count for that piece of cake, and make up your workout tomorrow. Move on. It does nothing to dwell on it or guilt yourself for something that doesn’t want to be controlled.

Have another tip to add? Share it below.