Category: T1 Rants and PSAs

The “Not-Quite” Threshold

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As much as I love having the technology we do these days, such as continuous glucose monitors that alert me when my blood sugar is out of range, it’s issues like this that make me question, why bother.

I present, the Not-Quite Threshold.

https://www.instagram.com/p/BEg23ytCMWV/

I have my high alarm set for 180 mg/dl. It’s high enough that I don’t experience alarm fatigue, but low enough that I could stop a rising high before it gets out of control. Usually after a large meal or a low treatment.

I had a minor hypo at around midnight. I probably wouldn’t really treat a 70 mg/dl with a full box of juice, but I didn’t want to deal with waking up AGAIN to continue to treat a low. So I had most of a juice box, around 22 grams of carbs, and went back to sleep. Blood sugar shot up to about 175 mg/dl. And stayed there until I woke up in the morning at 5:30 am.

Just under my threshold to wake me up again and correct the overtreatment and wake up with a semi-decent blood sugar.

But according to my Dexcom, my sugars were still in range so there was no need to alarm, even though I really wanted it to do so.

I’ve since lowered my high threshold to 170 mg/ml; hopeful that I will be woken up by these minor highs more often and lowering my average. Because it’s the stuff like this that is kicking my A1c in the ass.

Also waking up hungry and not being able to eat is frustrating.

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Take a Look at My Future

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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..)

Dizzy, Spinning, and 54

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Unhelpful Dexcom - SeeJenDance
If you are a PWD and haven’t heard of Kerri at SUM, I sincerely question your Googling skills. I catch a lot of her posts on Facebook and she re-shared a blog post today from 2012 that stopped me on my too-short of a lunch break.

The post was titled, Lows in Public – a phenomenon I’m all too familiar with. Especially as a dancer and someone who just enjoys a night out. The example of stumbling off to the bar asking for a cup of “just orange juice, please” is a scene I’ve played out several times. (Though, sometimes it is a regular Coke, or gah, a Red Bull.)

Kerri is correct, though. There isn’t ever a convenient time for a low. Especially one that leaves you with your mouth dry, the room spinning, your limbs shaking, and the desire to eat the entire contents of your pantry.

While dancing, or during any sort of exercise, things escalate quickly. It’s easy to get lost in the music or entranced by the power of a great lead. So the usual telltale signs of a problem aren’t generally noticed. That is, until your ability to communicate the partner dance basics – frame and connection – become frail, disjointed, and those turns take way more out of you than normal.

In a lesson setting, these lows also effect my ability to process any information, no matter how mundane. I’m easily frustrated. My ability to speak is labored and my eyes glaze over or blur. My teachers are pretty aware of when something is wrong, and understanding if I need to take a break. “It’s cool, Jen, just wait it out. I’ll explain something/choreograph/do something that doesn’t involve thinking for 10 minutes.” But, have I finished out a lesson while ignoring my symptoms? Yes. More than a few times.

The frustrating part of it all is that I want to keep going. I don’t want to randomly stop a social dance and awkwardly exit stage left. Usually, if I’m dancing with a stranger, I can’t give a two second speech on why I’m suddenly hungry and need to get off the floor. But man, if I’m 54 mg/dl, and there are two minutes long left on that song, it’s the longest two minutes ever and I’m hoping that I can remain upright. (Because, well, passing out is probably equally awkward.) And the dance just goes downhill from there.

Or the lows that creep up when I need to leave my house and drive to a private lesson. They are usually the ones that stick with me. The ones that take about 3 treatments before 50 turns into 60… and then turn to 240 an hour later. I have treated and just made the drive before. It is never a great decision if I’m still recovering from the lingering low feelings beyond when the latest test is back at a safe level. (Adrenaline is a bitch sometimes.)

Classes tend to be easier to escape, unless it’s short on followers. And then I get the guilt of putting the effort into making it out to class only to be sidelined for 1/2 of it. Why won’t these glucose tabs work faster again?

Between cutting a dance short or interrupting a Master teacher mid-thought, diabetes is the bane of social dance etiquette. It’s already an inconvenience for me; why should it be an inconvenience for someone else (well, the passing out thing… again)? My thought is if I can just push through it with semi-consciousness, I don’t have to feel even more helpless than I already do. Where I have to succumb to the inconveniences of hypoglycemia and I can no longer pretend to be normal.

Ignorance is Not Really Bliss

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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?

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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. 🙂

PWD: Phone Home?

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nope_iphone_4_

Filing under: “I didn’t really think of that until just now.”

I have an iPhone. (Or LemmingPhone for you Android users…) It is my only resource available to make phone calls on the road or, really, at home. (Because, why would I want to fire up Skype to talk to my techno-phobic parents and brother?)

I recently upgraded to one of newer models because I could and I’ve been futzing around iOS7 for the last week or so. Today – one of the “update me now” notifications popped up for the system itself. I downloaded the patch on my iPad last night, so I figure the BRANDNEW phone would be just fine installing a 33MB patch.

15 minutes before I’m supposed to leave for work and I find this on my phone:

HT1808--connect_to_itunes-001-en

Um, no. I’m not turning on my hubby’s clunky desktop PC and connecting to iTunes right meow. Activate HARDRESTART.

iPhone: Ha. Nope.

Long story short – I got the phone working again. But between the software update crashing my phone and not having the latest version of iTunes on my computer (whatever, Apple) I was without access to my cell phone for calls for about 3.5 hours.

I know. First world problems.

But seriously, for someone with a chronic illness, not being able to make emergency calls is kind of a big deal.

I don’t have a land line phone. My cell is my only means of calling for help if I need it. Since my hubby had left for work already, that phone was gone. All I had was a really expensive paperweight. No bueno.

I suggested to the hubs that we should get a land line. I don’t know if we will, but I’ve never really thought about needing it until now. That whole “what if?” thing was kind of freaking me out a bit. (Still – if I were hypo to the point of unconsciousness, a working phone wouldn’t do me any good either.)

I love the technology that cell phones are embracing. I barely use it to talk on the phone anyway. But – what if? What do you do?

Customer Service Please

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photo

 

A little shout out to the folks of Glucolift.

I hate glucose tablets, but they seem to be a necessary evil as a PWD. Since I run so close to baseline, I have a tendency to drop low… a lot.

Glucolift is a brand of non-GMO glucose tablets… made by PWDs. So, they feel our pain! (Or tastebuds.) They have three awesome flavors that don’t taste like chalk and I’ve been ordering them on Amazon ever since I discovered them about a year ago.

On my most recent order, I could only find Orange Cream and Cherry in their store. (I do really like Wild Berry.) Since I was desperate, I just ordered two Cherry and an Orange.

When I received the package, I noticed the Cherry label had changed to a cute little rocket ship, while the Orange remained it’s usual Typeface logo.

So I busted open the Cherry – and was greeted by a large amount of powdery nonsense. Gross. I just vacuumed.

The Cherry tablets were softer and messier. (The Orange ones were closer to what I remembered.) And… they didn’t taste that great. Less flavor, more chalk. Ugh.

So I went on Twitter to see if they had changed their formula to something more disappointing. Someone from Glucolift wrote back, indicating that they had finished revising their formula to make the tablets dissolve quicker and that the rest of the flavors were coming out soon.

Well that sucks – I liked the old formula. Even if they were a bit crunchy.

Realizing my concern, the Twitter responder (who was actually Chris, the owner), offered to send me some samples of the other flavors. I agreed. Couldn’t hurt and would warn me if I needed to find a new hypo treatment.

Yesterday, I got the photographed contents in the mail. Two of each flavor, a business card for their customer service rep, a sticker (!), and a handwritten note from Chris.

The verdict – the Orange and Wild Berry flavors still rock. I don’t know what’s up with the Cherry.

And because the company was awesome, I’ll continue to buy.

Random Number Generator

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Or… How I felt about my glucose monitor last night.

Don’t get me wrong… I’ve had hypoglycemic episodes during my dance lessons before. My instructor is all too aware of the different sounds my insulin pump makes. (Though… Apparently he heard a new one last night… The temp basal/hour change alarm.) More often than not, he hears the alarms before I do. With that in mind, I consider him to be an honorary member of my broken pancreas club; mostly because he’s around me when my sugars drop the fastest – during exercise post-dinner.

Last night was a pretty traditional trend. I had a dinner that I may have blouses too aggressively on, my CGM reading was around 102 an hour after I ate, and I was headed into samba rehearsal. To be on the safe side because I felt a drop coming, I tested.

49.

Huh.

I went into treatment mode immediately. But paused because I didn’t “feel 49.” So I checked again while knocking down a Juicebox.

76.

And because third time’s a charm, 74.

So… I was probably closer to the 70s after all. Finished the Box, set a small temp basal, and went on my merry way.

Half way through the lesson, my low alarm goes off.

“Do you need to take care of that?” He asks.

“No, I already did. It’s just a residual alarm.”

“Oooookay.”

<10 minutes later>

“Yeah, I’m gonna go test again… Sigh.”

Meter: “52!”

Me: <facepalm>…What happened to that last Juicebox?

My CGM graph is trending downward into the 60s and I finally start feeling the low to the point of disorientation. But, I’ve treated said low, so I should be fine to run my routine at nearly full speed.

Ha.

I nearly toppled over half way through. Hyperventilation, ghostly pale… just… an ugly ugly low. Needless to say, my lesson was over for the night.

The question still remains – what exactly was my starting blood sugar? I’m still not really sure.

Have I mentioned Strip Safely before? Yes? http://www.stripsafely.com/

I know – Congress is a wee bit backed up right now, so sending letters right this second is probably not going to do much good. But when we have a Federal Government again, jump back on this campaign. Do it for me, the zillions of other PWDs and their allies that see them go through this.

Counting Spoons

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index

My aunt posted a link to this story on her Facebook Wall this last weekend. The Spoon Theory. Or – an analogy for explaining what it’s like to live with a chronic condition or disability. Per the reaction on my Wall after re-posting, it’s not a “new” theory. But it was new to me.

In the article, the writer describes her daily battle with Lupus – another auto-immune disease. She describes her day-to-day regiment using silverware, explaining that every day, she only has a certain amount of spoons to get her through her tasks. Each time she chooses a task, such as waking up in the morning, she loses a spoon. When all the spoons are gone, her day is essentially shot, so it’s best to chose wisely.

I choose spoons as well as a PWD. It’s a bit different dealing with a broken organ than say, a broken muscular system. I’m lucky that I don’t have major complications that would prevent me from getting out of bed in the morning. However, I do need to chose my spoons carefully, as I could pay for that choice tomorrow… or for three days straight… or for the rest of my life.

Let say I also started with twelve spoons, as mentioned in the story. Let’s see. Yesterday, I started my day off with a lovely 234 mg/dl for no reason. (Other than I had yanked out my sensor the night before because it was misbehaving.) Good bye spoon #1. Why? Those morning blood sugars usually set a trend for the rest of the day. If I start of normal, I’m in a good mood. If I start off high, I have to wait for my corrections to kick in before I can eat, which skews my morning routine. This can cause delays in meals, and more importantly, coffee consumption.

Speaking of coffee consumption, I’ve been extremely exhausted all week so I’ve been relying heavily on it’s power… and the odd things it can do to my blood sugars. #2 – gone.

Let’s talk wardrobe. I wear a pump 24/7 and usually have a CGM installed. Wearing skirts, dresses, and pants without pockets usually takes considerable thought and effort in the morning, which I don’t want to deal with. And if I wear my pump clipped to myself, I’m no longer “invincible.” Don’t even get me started on shoes. #3 – gone.

Breakfast time! I’m still fighting that 234, and the correction hasn’t really kicked in. I could have my usual 20 carb meal with predictable (usually) results or I could stick to something more protein heavy, but experience a slow upward trend up until lunch time. Skipping the meal all together isn’t an option. (Because in reality, I’m starving.) Over-correcting my dosage could lead to a crash later. Anything I do at this point won’t help my high blood sugar and will probably plague me for the rest of the day. #4…

Because of the high blood sugar, breakfast indecision and so forth, I am running late for work and have no time to reinstall my CGM from the previous night’s failure. Since the CGM requires it’s own special timing that would probably use up about 4 spoons in my day alone, I decide to fly blind for the day and rely on finger sticks. #5…

So – before I even walk out the door for work in the morning, I’ve lost 5 of my allotted spoons for the day. I’ve only been awake for 2.5 hours. Some days are not as dramatic and sometimes I can hold on to my spoons for longer to save for later. Other days – my spoons are gone in 6 hours and I might as well sit on the couch for the remainder of the day and say “fork this!” because nothing I do for the rest of my waking hours will make me feel better.

People with Diabetes need a seat at the table– Sign this petition NOW.

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Reblogging because I’ve been pressed for time as of late (I actually have work to do at BOTH jobs now!) and I would essentially say the same thing as Stephen.

The FDA wants to hold patient meetings next year for those with chronic conditions. We need them to listen to US. If you haven’t helped by signing the petition, please do so. Everyone has a SPAM email these days. Just use it. 😛

Ok… Back to work.

Diabetes Blog - Happy-Medium.net

Your help is needed right now– this minute. Take five seconds to go to Change.org and sign a petition urging the U.S. Food and Drug Administration to hold a patient meeting on Diabetes.
 
 
The backstory, from DiaTribe, who is sponsoring the petition:

“The Food and Drug Administration has begun to hold a series of patient meetings to gain a better understanding of specific diseases. Over the next five years, the agency plans to conduct at least 20 such meetings on conditions ranging from Chronic Fatigue Syndrome to Narcolepsy to Irritable Bowel Syndrome.

But not diabetes.

That is unacceptable.

Four “slots” remain open, and we want the FDA to add diabetes to its meeting docket for 2013.”
 
 
It is well known that 26 million Americans are living with diabetes. Nearly 80 million more in my country are at risk of developing diabetes. Despite years…

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