Dizzy, Spinning, and 54

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.

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Well, that’s over with…

Both Bean and I had the day off today. (I from work, and daycare was closed.) We braved the rain and finally made it to the Lab. Yes – it was TrialNet day.

Finally. Part procrastination, part scheduling challenges hindered this little experiment. One vial of blood took nearly three months to draw.

She did so well. There were tears, of course. I got flashbacks of me in my mom’s lap during blood draws as a child. The ugly lab chair with the fold down arm. The white walls. The only thing missing were the stickers on the band-aid. (Though, I could have lived without the strange waft of cigarette smoke in the lobby, which I couldn’t explain.)

So now we wait.

Musings of a New D-Parent

Just a random assortment of new mom w/D thoughts.

1) Between Bean’s middle of the night wake ups, my cranky CGM, and my leaky boobs, I get approximately 3 solid hours of sleep per night. My Dawn Effect is very confused.

2) My postpartum A1C was much better than expected. I also still spend a fortune on orange juice.

3) I have gotten more “No Delivery” alarms in the past 4 months than I have since I got on the pump in 2006. These alarms usually come when Bean is screaming at me for some reason.

3a) Bean also screams when I have hypoglycemia, a really high blood sugar, or when I have just finished a giant bolus to cover the meal I will eat cold 20 minutes later.

4) I’m really happy coffee has a minimal effect on my blood sugars.

5) Questioning my endocrine system because my hair is falling out in chunks? Nah – that’s just postpartum hair loss. I’m surprised I don’t have a bald spot.

6) I can’t keep up with the latest trends to keep Bean from getting diabetes. Though, we are going to try some Baby Lead Weaning, so I’m kind of excited to watch her gnaw on a rib when she’s older. She’ll probably also get some toast. Or a waffle.

7) My endocrinologist suggested we let Bean “cry it out.” Is that grounds to find a new endocrinologist? (An aside – I’m not opposed to it when she is much, much older, because… toddlers. But she is 5 months old, dude.)

8) Bean’s first word is probably going to be “high” or “juice,” or “meh.” (That last one is totally a word.)

9) I was reminded about TrialNet at my last endo appointment. Apparently I can test Bean for T1 markers, and later have her participate in clinical trials if markers appear – just needs a blood test and a lifetime of worry.

10) I’ve used my CGM or pump as a flashlight to check on my sleeping daughter more times than I can count.

11) I qualified for a free upgrade to the Dexcom Share system since I bought a new receiver in February. Handy, since I seem to have my phone near me than I do my Dexcom receiver.

12) Bean’s room is a black hole for CGM transmissions. I can leave Dex in any room of the house and go anywhere in the house and the signal still works. Except in her room.

13) If Bean is laying on me, or nursing, her diaper will always leak on the pocket housing my insulin pump.

14) When I say that I’m having a crappy pump day to M, I have to be more specific.

15) Thrush is a pain in the ass (or boob?) and just another fun thing to manage as a mom w/D. I assume because I’m a sugary sweet individual, I’m more prone to these infections.

#Dblog Week Day 1: Test 1 2 3… is this thing on?

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. 

Well, hi! This is quite the week to come back to, isn’t? Perhaps one of the biggest, busiest weeks for Dbloggers. Maybe this will help re-kickstart my blogging habit – though, I have to admit, watching my stomach grow full of my shifting organs is rather entertaining. (The morning sickness still isn’t, however. I’m going to be one of those pregnant women, aren’t I?)

Being that I’ve been rather occupied lately, my advocacy attempts have been limited. Especially since advocacy wasn’t really the goal of this blog anyway. I just wanted a place to journal my dance journey as a T1 (and maybe squee loudly when I finally conceived a child.) Both happened, so maybe that’s why I’ve disappeared from the blogsphere a bit.

But I’ve created an interesting corner of the internet in the process. Since I let some of my IRL friends know about the blog, I’ve opened up a world I often keep private. Indirect, yet open communication through the blog allows for conversation later, usually for clarification purposes to help them understand me more.

Advocacy doesn’t have to be a big campaign. (Although – I like those too.) The more people who understand this wicked condition, the better. Even on a smaller scale within a community. It’s one more person who knows how to handle emergencies and one more person to help dispel the misconceptions.

Narrowing the Options

It’s a slow day at the office, so I’ve been using my time to research/read up on the Animas Ping and any additional information I can get on the 530G. (Because their specs aren’t on the interwebz ANYWHERE!)

Don’t get me wrong. I like the t:slim idea still, but realized that while it has a 300 unit capacity insulin cartridge, I don’t go through that much insulin ever. I mean – I might whenever the pregnancy fairy grants my wish, but really? I barely use up my 200 unit cartridges in the three days I’m allotted. So – I’m less enthusiastic about the t:slim until I do more research/ask for a demo. Which leaves me with the unresearched Ping and Medtronic.

My biggest question lately has been the ability to do tiny ratios for boluses. I thought I heard about pumps getting down into the .5:1 range. (Apparently, that is just the UK’s Animas Vibe…) I’d love that option to get that low. I’m already on a 1:5 carb ratio for a majority of the day before pregnancy. Something tells me a 1:1 still won’t be enough in my 3rd trimester. (Though – the thought of giving 30 units of insulin to cover 30 grams of carbs is rather frightening… and a very real possibility.)

I began to look up 530G reviews and stumbled upon this article from D-Mine, which was written shortly after the press release was distributed for the 530G.

A few things struck me as alarming:

“This got me thinking: Could I just get a new Medtronic pump itself?

I picked up my phone and called Medtronic to ask about buying a new pump. Two different reps in the course of an hour told me the same thing: No, I can no longer just order a stand-alone pump. My insurance now REQUIRES me to get the newest device

So short answer: No, I cannot get a stand-alone Medtronic pump to use with my Dexcom G4.”

Seeing how I just asked for a prescription for a Dexcom G4 YESTERDAY, I got a little nervous. So – is Medtronic off the table completely now? (Because – why on earth would I pay for two CGM systems?)

On my lunch break, I called Medtronic myself and asked if the Revel pumps would still be made available to those who didn’t want the 530G. She told me it depended on my insurance and if they covered CGMs. (Which answered my question about Kaiser was going to deal with this because they don’t cover CGMs for anyone unless you are deemed “brittle.”) I said my insurance covers your current CGM just fine, but I didn’t really want to upgrade to the 530G; just the Revel. She said I could “request” the Revel if I wanted to, but it would just depend on if it got approved or not. (Approved by who?) The approval process would take the same amount of time as it would to request approval for a 530G, which was 5-7 days. Makes you wonder what the approval checklist looks like. (And do they decline requests without reason other than your insurance will cover the new model so that’s what you should get?) The whole thing seems a bit odd, but it sounds like they’ve updated their reps’ telephone manuals from the time that D-Mine article was written.

So – the Revel is still a possibility? Maybe?

More on the Ping tomorrow.

Sick Ward

I’m at the tail end of a bad cold, which has left me with a cloudy head and hacking, dry cough. (So – I wouldn’t be able to sleep anyway. Hey, look, my blog!)

My blood sugar average has been hanging out in the 160 range for the last few days… which is abnormal-ish right now because I typically stray in the 120 range because of all my hypos. I haven’t had a low… or blood sugar below 140… since Monday.

Yep – I’ve been sick. The strange thing is that when I had more volatile reactions to everything last year, I don’t remember seeing too much of a difference in being sick. I was just high all the time, so whether I had a cold or not didn’t make a difference.

Now I’m using temp basals to give myself more insulin – which still aren’t pushing me below my threshold. (I’m really glad I decided to take a mini vacation from my sensors this week, otherwise they’d keep me up all night.) And I still have a healthy appetite – which doesn’t help with my blood sugars at all.

Oh – and I have a show this weekend. And two holiday get togethers. Come on health!

Why Dance?

I stumbled upon a really neat non-profit based out of San Francisco this weekend.

A couple of my friends participated in and/or watched April Follies: a same sex dance ballroom dance competition held in the Bay Area this weekend. One of their vendors was Dance Out Diabetes. (Some of their board members and volunteers even competed and did REALLY well.)

Dance Out Diabetes provides monthly dances and instruction for folks who are enjoying life, either as a T1, a T2, or a pre-diabetic, and want a creative solution for that “physical activity” element of self care. Dance instruction features ballroom and social dancing, zumba, disco, and soul line dancing, just to name a few. The instructors are volunteers, as are the Certified Diabetes Educators and Dietitians. The funding they receive provides A1Cs, glucose tests at the dances, nutrition counseling, and height/weight checks.

You can visit their website here: http://www.danceoutdiabetes.org/

Now that I’m only semi-employed, I might have some extra time to head to the bay and volunteer. After all, I’m a prime example of how exercise can help glucose control, even though I complain non-stop about where to put my pump while in costume. Granted I can’t provide medical advice, I can provide another stem on a network of support.

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Shots were never this complicated

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I was a child with diabetes in the 80s so I had my fair share of analog technology to assist me with control. Ketone strips that were used to find high blood sugars rather than glucose monitors that gave results in 5 seconds or less. And if you had a glucose monitor, it weighed 2 pounds and took approximately 2 and a half minutes to produce a result after multiple steps. (And a crap ton of blood.) Then there was my insulin regiment of NPH and Regular, given multiple times a day in a syringe. No continuous glucose monitors. Insulin pumps were in their very early infancy. You just lived with what you had and the meager technology that was available  was what you used.

But it was so simple! Administration was a guarantee with shots. Whether the meds worked or not were a different calamity, but at least you physically drew insulin from a bottle and injected it somewhere.

Now days, I have to wonder if my high blood sugars are from a meal, a lack of basal or some sort of pump malfunction. (And that’s just the basics for where a high could come from.) My life seems dependent on batteries moreso than a correct basal rate.

I say all this because I finally met with Medtronic again this morning. My CGM transmitter is a dud. I need to send it back after I get my replacement tomorrow. This is probably the reason for most of my CGM woes over the last month.

This is the third Medtronic device I’ve had to return and have replaced because of some technical glitch. (Though, now I’m wondering if I needed my second pump… not that I’m complaining.)

Is this normal? Or do I just have really crap luck with technology? I mean, I work on computers all the time and those don’t crumble to Blue Screens when I walk through the door. I don’t enjoying breaking my diabetes tech. I try not to do it on purpose and I don’t think anyone does. But seriously… this is getting kind of ridiculous. Shots wouldn’t give me calibration errors or beep incessantly. They just did their job and were disposed of.

When did this become more complicated?

I have a drinking problem…

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You know… I’ll admit it. I used to love the occasional hypoglycemic episode. The off chance you could “cheat” your diet and have something super sweet, like a Reese’s peanut butter cup, or a handful of Skittles, or that piece of cake with the frosting still on.

Now that they are coming so frequently for reasons unknown to everyone, I feel like I’m abusing my orange juice bottle. I’m now dropping into the 60s (or lower) almost daily. My day today actually started at 1:30 am this morning with a dip into 37 mg/dl. (That was after waking up in a cold sweat… again.) After a midnight snack and minor correction, I woke up the following morning around 170. (Oddly enough, not an epic rebound.) I kind of stayed elevated all day until I finally raged bolused myself back to 108 pre dinner. (Those protein shakes are tricky apparently.)

I did my Sunday baking to plan for my breakfasts this week. I made these and followed the given nutrition facts as stated. 27 grams of carbs for one. But I split it with the hubs and I was probably still floating around from dinner and eating some of the batter, so I gave for 15 grams of carbs.

About 20 minutes later, I was 59 mg/dl. Hello juice box… we meet again. Oh and here is the headache… shakes… urge to eat everything in the fridge even though you are full. Yeah, this isn’t fun anymore.

So I’m not really sure what to do. I know I need to do my overnight basal testing, which should help stop the 1 am lows, in theory. However, I can complete the test if I’m dropping low by 8 pm. (Which makes me think it’s still a bolus problem.) Or maybe I’m just calculating too much. Maybe that latte didn’t have 14 grams of carbs. (Even though, it says it does…)

In my best effort to eat better and cut out as many carbs as humanly possible to alleviate my postprandial spikes, I seem to be doing myself an even greater disservice. Therefore I am doubting all of my efforts once again.

I don’t even want to think about what food aversions I’ll have while pregnant and the lack of control I’ll experience. With my luck, I’ll probably have to give up the juice.