“28 year old Type 1 diabetic with a blood glucose of 33 mg/dl after three juice boxes. It’s been over forty minutes and it’s not coming up.”
“Is the patient unconscious?”
“I am the patient.”
Silence greeted me at the other end of the line, then the emergency operator croaked out:
“Wow. All right. Paramedics are on their way. Can you unlock the front door?”
In 1998, I made the first and only 911 call (so far and knock on wood) about my diabetes. Dinner was vegetarian chili and a beer, and before the pump came into my life, it was the ol’ fast and slow acting insulin show. What was injected in was going to be acting for a long time.
I didn’t count on my food not acting at digesting well - or in this case, at all.
While I was living with someone, he worked nights in the ER at a hospital across town. I was alone. A few hours after I finished my meal, I felt overwhelmingly sleepy, so I got up to check my blood sugar before snuggling down into bed.
Before I see a number like that on my meter, I’m not panicking. It’s that fuzzy thought of: “I’m probably a little low,” that turns into: “Oh. Oh. Oh. No.” I’m fine before and then I’m not. All rational thought flies out the window. It’s go time.
The first juice box went down easy. I remember intently studying the carb count on the side of the box, willing that 24g of pure apple to kick into gear. I knew I would need to ingest more than 24g, but it would get me out of the weeds.
I watched the clock. Tick. Tick. Tick. Precisely fifteen minutes later, I checked again.
My inner monologue was a little salty and blue. The second juice box was choked down. Did you know that you can make a game of pulling a juice box straw in and out of the hole, trying not to pull it out of the box? I lost the game a lot, but it was something to focus on as I sat on the floor of the bedroom, blatantly ignoring the rising adrenaline and cortisol levels.
Low blood sugars suck. I’m one of those people who can still function (and I use function loosely, but I can still verbally communicate and stay upright) in a severe hypoglycemic state. I’ve never passed out from a low. In later years, I’ve had severe hypos when I needed assistance and ones in which my muscles contracted involuntarily, squeezing to get that extra glucose out to help save me. (That is NOT a pleasant experience.) But I had someone around to help me.
I was alone. And after the second fifteen minute mark, the meter was reluctant to show me where I was at.
I picked up the phone and called my boyfriend at work.
He knew that I wasn’t calling to chat. He worked in an ER and I never called him there.
I explained, rambling a bit about how I was tired of juice boxes, and that I’m still not coming up.
“Here’s the deal, Christel. We can hang up and you can call 911 or we can hang up and I can call 911. Which do you want?”
We hung up. I placed the call and confused the operator with my 33 mg/dl and I’m still conscious and it’s me and not someone else. Paramedics showed up less than 5 minutes later and tramped into my living room with cases of equipment to find me watching late night TV, taking minuscule sips from my fourth juice box.
They offered IV dextrose and a trip in their shiny ambulance to the local ER. I asked them to wait with me for 15 minutes more and retest. We talked about what happened and then laughed at the informercial blaring from the corner.
They stayed another 15 minutes and I admitted that there was no way I could put anything else in my stomach, so if my blood sugar went south or stayed that low, my veins were their playground.
I felt like I won the lottery.
My boyfriend had called a coworker who was in our complex and had just gone off shift to come be with me for a while. She arrived, flirted with one of the paramedics, and hung out while I slowly drifted upwards to 104 mg/dl. We both slept in the living room.
I was diagnosed with severe delayed gastric emptying two weeks later. (I had other incidents after that, none as serious, where I would eat and go low after a high carb meal with a very slow response to treating glucose.) My stress levels were off the chart and the combination of my body rebelling from the stress and my diabetes manifested in this lovely lack of digestion. I was sent home with anti-emetics and some gastric motility drugs, wondering how I was going to live with this.
Happy to say that my stomach decided to work again after a while (and after the stress went away). But that 911 call is my reminder that no matter what, when you need help, pick up that phone as soon as possible.
Why do I tell you this story? Because I almost didn’t pick up the phone.
And no one would have been there to make that call for me.
“You want to go get some ice cream?”
I like ice cream. With some foods, I never quite know what will happen with my blood sugar (i.e. pizza or a bagel), but I SWAG (Scientific Wild Ass Guess) for ice cream with a confidence that I rarely have with other sweets. So, the answer was a resounding yes and with The Kid firmly set on John’s shoulders, we marched a block to the local ice cream shop.
Peanut butter fudge ice cream with peanut butter sauce. Small cup. BG was going up a little (Snacks at the park - Pirate Booty), but manageable. I dosed and enjoyed every minute of that peanuty goodness. We walked back to the car, chattering away about birds and cars that go beep. I checked my graph on the Medtronic MiniMed 530G and it was stable.
The freefall happened within 20 minutes, and it was my fault. The idyllic day called us outside and an impromptu walk around our neighborhood. The magic number said 173 mg/dl with two arrows pointing down. We weren’t going far and weren’t going for long. A casual meander. Fifteen minutes later, it said 82 mg/dland I was not feeling content anymore. We got home and as we walked through the door, the alarm started to chirp. BG 72 mg/dl and falling. Meter said 62 mg/dl and I said juice. Drank it. Felt better.
It was my fault that I didn’t suspend the pump. It was my fault that I didn’t check 15 minutes later. It was my fault that I snuggled down into the couch and began to watch TV. I got sleepy. Thought I needed a nap. Stood up, waved at John and motioned to our bedroom, mouthing that I was going in.
Did I check before I went in? Nope. But the alarm kept going off on my pump and I ignored it. The threshold suspend feature kicked in and through my haze, I realized that this was not a drill.
I vaguely remember wandering into the kitchen, walking past my family and pouring myself a glass of juice. I was intent on getting “just eight ounces” into the cup, holding it up to analyze my measuring capabilities. I didn’t guzzle it down, but casually sipped at it as if I was at a cocktail party and didn’t want to pay $10 for another drink. John’s voice was fuzzy…or was it me that was fuzzy?
“Oh, yes. I’m fine. I’m not fine. I’m low, but I’m fine. I’m drinking my juice and I’m going to be fine.”
He knew that I wasn’t fine. He verified that the pump was still suspended and told me that he’d come back in and check on me in ten minutes. (He checked on me in five minutes, but was in the next room in case I needed him.)
I drank my juice. I ate some things. I came up slowly. I shuffled past my peeps and back into bed, mumbling that I was tired but my blood sugar was coming up.
And up it did. You know the drill. Overtreat. Bounce. Soar. Dose a few units to stop the rise past 400 mg/dl.
When I went to bed, my blood glucose was 132 mg/dl.
Threshold suspend happened again around 2am. 54 mg/dl.
It was my fault. I take blame for this one for my choices of nourishment and my failure to check. I thank the pump for catching not one, but two sucky hypoglycemic reactions in twelve hours. (And yes, I know about the increase of more hypoglycemic reactions after a serious low. It’s my fault that I didn’t take more precautions when coming down.)
So, this morning, I’m running on fumes. And a BG of 97 mg/dl.
This disease is not my fault.
My choices are my own, and when they’re incorrect and cause issues with my disease…
it’s my fault.
Not long after my diagnosis, we stopped into a busy restaurant near the beach. The windows of the regal old manor overlooked the rocky bluffs and we arrived at the height of the dinner rush. No reservations, but I overheard my mother say to dad: “Let’s see if we can get a table. I’ll tell them she has diabetes and she needs to eat right now.”
Mortified. Ashamed. I couldn’t believe that my diabetes was going to be wielded as a weapon or as a quick pass ahead of those who had the forethought to make reservations. I quickly turned and explained that I didn’t need to eat right away; I hadn’t even taken my shot yet. My parents must have seen the look of fear on my face of being “outed” for no good reason. We headed back to the car and ate somewhere else. I don’t remember the meal we ended up eating, but I swore to myself that I wouldn’t wave the “D-card” if I could avoid it. No excuses due to diabetes.
Have a bad night with highs? Go to school. Power through. Chug liquids and ignore the fuzzy feeling in my head. A low at 3am? Go to work. Power through. You’ll feel better in a while. That was my teens and twenties and thirties. I didn’t want anyone to think that diabetes would make me weaker. Less competent. I may have been exhausted or felt queasy, but I was not going to let it get the best of me. (If I could go to work slightly hungover, I could certainly go to work hung-low-ver.)
Much like I’ve found that I can’t drink alcohol anymore without turning green for days after two beers, it’s also become apparent that I’m no longer able to avoid pulling the D-card. A severe low two nights ago had me canceling plans with friends the next day and let The Kid watch PBS all morning while I parked myself in a supine position on the couch. This summer, we went to Disneyworld and for the first time in my life, I used a Guest Assistant Card (first and last, as the rules changed after we went) to avoid standing in the sun too long. If it hadn’t been for that special consideration for diabetes, it would have been a very short and expensive day. (Even with the CGM, the lows came fast and furious. We would have spent most of the afternoon sitting somewhere not having fun while I recuperated.)
Lows sap the marrow from my bones. Highs have me swimming through molasses. Days where I ride the diabetes roller coaster derail me. I can’t power through anymore. I can only power down and hope that I’ll recharge within a few days.
Truth be told, until recently I couldn’t understand when other people with diabetes would talk about how they missed school or work because of their diabetes. In my head, I’d ask: “Why don’t they power through? I don’t get it. How can it be so bad?”
Ah, hubris. I believe that my fear of being treated differently and pride that I could power through prevented me from recognizing that while we all have diabetes, our bodies react differently. My luck has run out. Turns out, I’m not Super Diabetes Woman.
Now that I can’t bounce back, I see that when the D-card is pulled, it’s (most of the time) for a good reason - because it needs to be. I’ve had to learn that it’s perfectly acceptable to say that I had a tough night with my diabetes and that I’ll need to reschedule a get together. There’s no shame in asking for a little help if I need it. I can be excused from something because of my diabetes if I’ve done everything I can within my control and still end up with a sucky low. Or a sucky high. Diabetes won’t excuse itself, so I’ll have to excuse it.
But trying to score a primo restaurant table? Nope. Still not going to do it. Even if has a beautiful view.
I’ll use my D-card for good, not evil.
I took a little blogging break last week. It wasn’t intentional; I had other things cooking on the burners and gave them the time that was due to them. In the end, it all goes in the same pot, but it was strange to not write. (And that’s the extent of my chef metaphors.)
And now I sit with a large amount of caffeine, thinking about the good things that are happening in the diabetes world. In no particular order…
The Power of Community
According to an unofficial total (but from a source I trust), the Spare a Rose, Save a Child campaign raised…drumroll, please… $26,519. That’s a lot of insulin. That’s a lot of love. That’s a lot of lives that will be saved because the Diabetes Online Community raised their voices as one. I am in awe of the power of this community. For those who shared the message, thank you. For those who donated, thank you. (And it’s not too late to give a rose… )
Just because we’re not shaking the gates in person doesn’t mean that we aren’t working on ensuring blood glucose meter accuracy isn’t on our minds. Larry Ellingson has a guest blog post over at StripSafely.com, asking us all to join him in calling for congressional oversight of meter accuracy. I had the pleasure of meeting Larry at the DTS meeting in September, and I’m glad he believes as we do: whatever it takes to make sure we stay healthy and safe.
Think meter accuracy is not important? Larry gives another statistic that scares me (and it should scare you, too!):
A second survey confirmed that 27 percent of patients with type 1 diabetes had experienced health problems due to inaccurate blood glucose meter readings.
The FDA can only do so much at this point. It’s up to us to rally together to bring Congress the news: we need their help. Bennet and I will be putting together some points that you can use when talking with your representatives soon.
It’s an i-port Advance
Medtronic announced the i-port Advance, an “all-in-one” injection port. For those who take multiple daily injections, it basically takes the place of injecting into different places… and into the injection port. You insert the i-port Advance and for the next 72 hours, you inject into the port.
Injection ports aren’t new. I remember using an injection port years ago. (I don’t remember why. It was probably a sample or two to see if I liked it, but obviously I didn’t care for it, because I didn’t use it for long.) If you have needle phobia, it’s a great way to ease the fear of having to inject more than once a day. If you micro dose fast acting insulin for optimum control, this may be a great way to avoid seven or eight injections each day.
There was a study done in 2008 about the impact of insulin injections on daily life and the results didn’t surprise me much. The study showed that out of 500 subjects, 29% of them stated that injecting insulin was the hardest part of their diabetes care. Fourteen percent of the subjects said that insulin injections have a negative impact on their life. So… obviously there’s a need to help alleviates some of the negativity. The i-port Advance is one way to do so.
The Future of Glucagon
For anyone carrying around that red hard case in the bottom of a bag or a purse or next to your bed, you will nod your head when I say this: Glucagon is a pain in the ass. (Sometimes literally.)
The Glucagon Emergency Kit has been around for quite a while, but unless you’re with someone who knows how to use it, it’s useless. If you pass out, the last thing a stranger will do is rifle through your bag looking for something to help you. Even if you’ve shown a friend or a work colleague how to use it, when push comes to shove (or push comes to drop on the floor), it may be too complicated.
True story: I would give a little primer about my glucagon emergency kit to my staff. New team member = pull it out and go through the motions. I would end every discussion about glucagon with this: “Call 911 first. Then attempt to inject me.” Then the discussion would be who would draw the short straw to do this. I trusted my team, but knew that glucagon was a last resort.
These days, I’m hopeful that glucagon will be available in an easier delivery mechanism - and perhaps even not by injection! Mike Hoskins over at DiabetesMine has a great article about Next-Gen Emergency Glucagon, in which he discusses the big issue: stability of glucagon. (Currently, once mixed, it’s good for 24 hours. After that, pfftt.) But even more exciting? This:
Assessment of Intranasal Glucagon in Children and Adolescents With Type 1 Diabetes - Yes. It’s a clinical trial that currently is recruiting kids for an intranasal dose… Could this be more awesome? Nope. I am hoping that this is what’s in store for all of us. I’d be much happier giving a primer about: Hold this up to my nose and squirt. Wouldn’t you?
By the way, there’s also a trial for adults: Effectiveness and Safety of Intranasal Glucagon for Treatment of Hypoglycemia in Adults. You can get a little more info here: Evaluate the Immunogenicity of a Novel Glucagon Formulation. The company behind this is AMG Medical, Inc. out of Canada. I’m eager to see the outcome of these trials!
So, as I sit here this morning, I’m buzzing with excitement (or is it caffeine) with hope for the future. What are you excited about?
The Kid had a temperature of 102.3 and would only sleep if I was her human teddy bear.
My father had knee replacement surgery and I ate a Clif bar for dinner waiting to see him in recovery.
I was exhausted. I muffled the Dexcom under my pillow so The Kid wouldn’t wake up.
It didn’t wake me up.
Bedtime BG: 98.
12:45a BG: 39.
A stupidly large glass of grape juice and a few cookies.
1:20a BG: 159.
Temp basal of 70% for two hours. Go back to bed.
4:38a BG: 465.
Remind myself that just 8oz. of that juice is 40g of carbs. Not going to even talk about those cookies.
In the process of rage bolusing, I run out of insulin in my pump.
The Kid wakes up and watches me refill a cartridge, dose, and drink a large (but not stupidly large) glass if water.
6:45a BG: 226.
Cup of coffee. Dose for cream.
9:14a BG: crash.
My blood glucose is now back to normal this afternoon, but I’m not.
Stress + stress + stress = the sad graph on my Dexcom.
(Dad is fine, The Kid is better, and I need a long nap.)