Why a CGM is Important to Me

I didn’t know I was low.

I was sleeping peacefully.

My Dexcom started alarming that I was low, but somehow in my brain I just knew it was wrong. I had no symptoms. No rapid heartbeat. No sweat. No confusion. No anything.

If I hadn’t had the Dexcom, I don’t know if I would have woken up.

I am a firm believer that a CGM system should be standard of care with any diabetic taking insulin. When I had tighter control, I had hypoglycemia unawareness, but now that I’m a bit more relaxed, I’m usually able to catch the lows in the 60’s. But not this time.

All it takes is one time.

One time to not feel it.

One time to not have symptoms.

One time to not wake up

I’m ok now, just dealing with the aftermath with a low-induced headache and feeling overall draggy today (both from the low and my daughter who is my little night owl / early bird). But times like this? Rock me to my core. It’s times like this that make me wonder and think of how insurance companies can deny, any diabetic on insulin who has been prescribed this device, access to it. It shouldn’t be their call. Something needs to be done.

CGMs shouldn’t be considered a luxury item – they should be as standard as a glucose meter itself.

The D50W Experience

In a way, it’s sort of funny how the medication used to bring up a low if you ever have to go there is labeled D50W… sort of makes me think of the metal lubricant WD40 in a way – though it has no connection whatsoever other than the letters are the same and in different spots and one number is off.

BUT, that’s not what this post is about. It’s about actually having to go to the ER to get it.

Most of the time, a stomach virus is simply an inconvenience to most people. It sucks, no doubt about it. But when you’re a diabetic, it can be dangerous. Some people react with high glucose levels due to the sickness and can easily go into DKA (diabetic ketoacidosis) because you’re dehydrated from the sickness. That’s usually how I am in that I stay high for the most part because of dehydration, but I’ve never gone into DKA. I’ve also not had a situation where it had the opposite affect on me and made me low for an extended period of time… until this past weekend.

Saturday morning, I woke up feeling very queasy and knew I had caught my son’s stomach bug that he had the day before. Knowing that I usually run high, I didn’t turn my pump down at all, but also being pregnant, I didn’t want to assume that I would run high and turn up the basal unless my BG showed the need for it. And it was a good thing that I didn’t.

I was able to eat breakfast as long as I ate slowly enough. But, two hours later, I started trending down. I started eating glucose tablets and drinking juice as I could tolerate. Before long though, my stomach was full and not digesting anything, and my sugar was plummeting even more. I kept trying to eat glucose tabs. Eventually, upon smelling yet another drink, I lost everything. I could see that I had thrown up every bit of anything with sugar – glucose tabs, juice, my breakfast… all of it. So, as much as I didn’t want to, we had to get to the ER. I knew I wasn’t going to be able to hold down anything and I needed help.

It took 30 minutes to even get treatment, even though they took me back immediately. I had heard the doctor give the orders for half of the syringe of D50, but the head nurse was busy trying to find the billing code for it and apparently got side tracked. I guess because I was awake and not passed out they didn’t see it as quite the emergency that I felt it was. I knew before getting there, my BG was 52. By the time another nurse came in to start an IV of fluids, my BG as down to 45. I asked her about it, and finally the head nurse came in with the D50.

It wasn’t long and I began to come up again. However, it didn’t hold very long and they had to come back an hour later and give the rest. All this time I had been trying to find a good temp basal to set my pump at but that wouldn’t have me skyrocket and get sick from having no insulin at all. The last thing I wanted was to go into DKA straight from a low because I was dehydrated and now I was going to be cutting off all insulin… and from what I could tell, the staff in the ER had no idea of what to do with an insulin pump.

The ER visit

I was finally stabilized and set home around 3-ish, and I did okay the rest of the day. I will say it was one of the scariest things I’ve had happen in a long time. I hate when I am no longer in control of what happens with my diabetes for whatever reason and it makes me anxious, plus I was scared because it wasn’t just me that I was worried about but also this little person growing inside of me.

While I’m angry over how long it took to receive treatment and how some things happened while I was there (they were more worried about paperwork than treating me at all to begin with), I’m thankful that it wasn’t worse than what it was. My ultimate fear is losing consciousness and no one knowing what to do and how to treat me because they’re unfamiliar with how I manage my diabetes. That, along with being labeled as an uncontrolled or careless diabetic for letting it happen in the first place. I work my tail off to achieve the control that I do, but all it takes is one person giving into the stigma that only uncontrolled diabetics end up in bad situations (the ER, with complications, etc), which projects through their attitude toward me, to make me not want to trust them or feel like I have failed.

I know that I didn’t fail and that it wasn’t in my control, but it’s the emotional aspect that gets me every single time. I don’t know that I’ll ever be able to ask for help without that overwhelming sense of having failed and crying my eyes out every time.

Skittling

Yesterday morning, I had to leave work and go to my college business office to handle some financial stuff. I didn’t put it together in my mind, but when I got there, they had an actual waiting list… and a class-room full of people waiting to see people about their financial status as well… because class starts tomorrow.

During my two and a half hour wait, I noticed my sugar dropping. See, I’m trying to get my basal rates set as well as trying a new I:C (insulin to carb) ratio. In my haste to leave to try to handle the matter hurridly (seeing as how no one would speak to you over the phone – you had to come in person ), I forgot to grab my glucose tablet jar from under my desk. Once I noticed my sugar was in the 80 range, I suspended my pump.

Which wasn’t enough. By the end of it, I was still dropping. I ended up having to go to the restroom and thought I’d scope out and see if I could find a vending machine. There wasn’t one to be found. BUT! I did move some stuff in that bottomless pit called my purse and found what I had left in there a few weeks before:

I had half of a bag left in my purse from a prior low, all wrapped and folded neatly deep in a pocket.

Oh the joy!

I’m sure the security guard thought I was silly for how excited I was to find those little chewy pebbles of happiness.

My sugar rose to a nice 96 by the time I left, and was 124 when I returned to work.

Thank goodness for lost skittle packages!

Flashes

Have you ever been driving down the road and saw a buzzing neon store sign or motel sign?

Or had a lamp not quite plugged in all the way, and the light was flickering all weird and stuff, going in and out quickly and randomly? Where once there was a room full of light, but now, suddenly, there are quick flittering flashes of blackness?

Imagine that’s you.

Your eyes.

Your brain.

You’re driving down the road and suddenly, there are split-second bursts of darkness.

There’s a “loose connection” somewhere…

That was me yesterday, coming back from lunch. My insulin worked a wee bit faster than my food did, and I had gone from having a blood sugar of 156 to 40 within minutes… with no symptoms other than the above.

What’s even scarier was that I didn’t think I had glucose with me. ( I later found a snack bag of gummies in my purse for times just as this.) I kept on going until I got to the gas station and got some food.

Yes, it was stupid of me to not have glucose tabs with me. Yes, I was irresponsible in the fact that I probably shouldn’t have drove the rest of the way to get something, but in my mind, I had to get something and fast.

What’s more upsetting than all of that, to me, is this. I asked the question during the JDRF Live show Monday, “If we know we need better insulins and more accurate CGMs, why aren’t we working on those first before the artificial pancreas project?” Why would I ask that, you might think?

Because my CGM hadn’t “caught up” to the low yet. I was still reading 114. Even if my pump was equipped with LGS, it wouldn’t have worked. My pump wouldn’t have automatically suspended. I still would have been low.

Umm..

Maybe I’m just on a rant, but seriously, I wonder how is the Low Glucose Suspend going to help if the sensors aren’t accurate enough to catch these lows?

I understand that the JDRF has their “pathway-plan” laid out as to how they think the steps need to be followed, but I personally have to disagree with their plan. I mean, it’s kind of like trying to build a wonderful house with laid with marble tile and crystal chandeliers on a foundation of rocks and sand, and then coming back to fix the foundation later.

I’m all for advancements in technology concerning diabetes. I really am. I just really hope that when it is available, the sensors will be more accurate as well.

I Sowwy

Iz Sowwy  Plz furgiv me

I didn’t want to do it.

I don’t want to ever be thought of as “disabled”.

Yet, because I requested it, I feel as if I have said that I am.

 

Yesterday, I bit the bullet and tried to cancel my gym membership because to be honest, while I can still exercise, I can’t exercise like I used to until after the pregnancy. And truth be told, I just don’t see the point of having the gym draft out of my account $30 a month just for me to walk on a friggin treadmill when I have a park down the road from me that I can walk around with a family member for free or I can use my WiiFit on rainy days when Erik is home. That’s money that can go in the savings account for when I’m out on maternity leave.

Also, I have to have someone go with me, and since my mother-in-law has a weird work schedule and my husband has been working pretty much double shifts (if you can call them that) at work (the only two who have gym memberships that live close to me), there’s no one to go with me right after work. And I’m sorry, but I’m not waiting until 8pm to go and then end up low before bed. I’m just not willing to do that. It’s hard enough figuring out the needed adjustments from week to week without throwing a monkey wrench of unscheduled workouts in there.

So, when I went to cancel it, they asked me why. So I told them. It’s partially because of money, and partially because of the amount of regulation it would take with my diabetes. I explained the lows that followed me all through the first trimester, and even still some now, and that with everything else going on, I can’t have someone with me to watch after me and I didn’t think it would be safe for me to come and workout alone and then them find me passed out on the floor from a low. Of course, then I got the common southern phrase of “Oh, bless your heart!” along with the explanation of what I could do.

My options are these: 1) I could cancel the gym membership and rejoin after the baby is born. But, to do that, I would have to go back through the approval process of getting a doctors note signed that I could exercise, pay an enrollment plus one month fee, and start my progress all over again in their system OR 2) I could get a doctors note saying that due to the lows during pregnancy, it wasn’t safe for me to workout, and they would put my account on a 6month freeze from April to October and after the freeze was up, I could come back.

So, I did it. I went with option 2 first to see if Dr. C would write the note. I know it sounds backwards to have your endo tell you NOT to exercise, especially if you’re pregnant, but I explained in my fax just what I’ve explained to you guys. I just don’t feel comfortable going without someone with me just in case there were to be a low or something. I also told him in the fax that if he didn’t want to write it, I would understand and I’ll just go with option 1 and cancel the membership. Who knows, by then my situation may not even have time and I’ll keep up the walking in the park – just with a strollered baby or I’ll do Zumba (Lord knows I miss that!!!) twice a week again outside of the gym.

I just hate that I did it. I hate that it sounds like I’m disabled. I hate that I used diabetes as an excuse after all the progress I’ve made to not make it an excuse for anything in my life any longer. I know I have to do what’s safe for me and the baby, but it’s the whole idea behind it.

It embarrasses me.

I feel like I’ve embarrassed the whole DOC.

I’m sorry.

Please forgive me.

He Held Me

1:30 am. Heart racing. Weird dream. Where am I? I must be low again.

*click-click* (light turns on) “You low?”

“Yeah….” Beeep Beeep… 27! “Crap! Yeah, I’m 27.”

For Emergencies D365-11Get to the kitchen… juice….. oh crap I feel sick. “Get the glucagon!”

“Where is it?”

“On my night stand.” Things are going yellow. I gotta sit down. “If I pass out, rememer, put the stuff into the bottle, swirl it, put it in my thigh.”

“Here! Drink!”

 I can’t see. Everything is yellow. Why aren’t my arms moving?

“Sarah! Drink!!! Come on. …. Sarah? You still with me? Come on, you gotta drink!”

Why am I wet? Everything is so… hot and cold.

“I gotta get more juice tomorrow. We’re out. Here’s the last of the orange juice. I put sugar in it. Drink the rest of this…”

Vision is coming back. I must be coming up. “Hand me a pop-tart – something with substance.”

 

Erik sat beside me holding me until I felt like I could stand. It had taken 30 minutes and 3 or 4 glasses of sugared juice to come up to 74. I don’t remember what all was said, but the above is the jist of it. It felt like an eternity. I don’t remember what it was like to pass out when I was 7yrs old, but I do know that between last night and the low I had last week is enough to scare the ever-living-crap out of me. It gives me chills to know that it’s just that easy to go from one number before bed (174, as a matter of fact) and to wake up only 2-3 hours later bottoming out and relying on someone else to keep you here. I think that’s the part that bothers me the most. I have to rely on someone else. There comes a point that sometimes in some situations I, myself, cannot do anything about what is going on because my body isn’t allowing me to. I hate that feeling with every bit of my being.

I hate that my diabetes is something that Erik has to worry about too. He has so much going on that I don’t want to add to his stress. I hate that diabetes requires the attention of not only myself, but of him too. This isn’t his disease, and I hate that it has become just as much a part of his life as it is mine. He didn’t ask for all of this when he married me, but he took it on anyway. And he was my rock last night. He handled everything perfectly. He stayed calm through it and held me when it was over.

For those of you wondering where my Dexcom was and why it didn’t alarm, it was because I had terrible headaches all weekend and I finally had to resort to taking Tylenol again. And, as you may know, Tylenol and Dexcom sensors don’t play nice, so I chose to forego the Dexcom to try to get some relief. I put the Dexcom back on this morning, and I have an appointment at my OB’s office tomorrow. I’m going to ask if there’s anything else that is safe to take during pregnancy that won’t cause me to have to take off my Dexcom. The headaches are bad, but the lows are getting too dangerous. I’m stuck between a rock and a hardplace and I don’t know what to do. Any suggestions would be greatly appreciated.

Endo and OJ

Yesterday afternoon, I made my second monthly trip to see my endo, Dr. C. I have found from the late appointments, you don’t have to wait as long, so I may start getting late afternoon appointments instead of early morning. I sat down, snapped a picture for George’s Waiting group on flickr, and within just a couple of minutes I was called back to the lab.

I sat in the little blue chair and started pulling up my sleeve when the lab tech stopped me. “No no, we don’t need to do a blood draw today. Just a finger poke.” Wow. I think that’s the first time in years I haven’t had to get my blood drawn in years! I kinda laughed at the mere fact that all he wanted was a finger poke… something I could have done myself and told them the number. But then again, I guess you do have people who fudge, so it’s best not to let them fight it and check. What’s another poke right? She got the one-time-use poker out and ready, stuck it to my finger and said “Ouch” as she pressed the button. I had to laugh. She kinda looked at me and I said “Sorry, it just doesn’t hurt anymore. I’m used to it.” She said “Oh, I’d be jumping anyway…. you’d better be chewing that gum harder.” “(me) I’m sorry, what?” (her) “I said you’d better be chewing that gum a little harder.” and she showed me the meter. 59. She offered me sweet tea and the nurse went to weigh me. (Which I’m still 10 pounds less than I was pre-pregnancy, so at least I’m maintaining now and not losing anymore.)

We went to the patient room and the nurse started getting all my info down from my pump. This wasn’t my normal nurse. The usual nurse had gone home sick, so I had someone else. Someone who didn’t know how to operate my pump. At one point, she had it in the temp basal setting about to turn my basal down. So, I offered to help and we got her to the right menus. Granted, I know they usually like to do it themselves so they can document that they read it themselves, but sometimes it’s okay if they don’t know how to use my medical equipment to ask me to show them. I mean, I do use it on a daily basis, ya know? Anywho, the lab tech walked in with a glass of orange juice (since they were out of sweet tea) for me to drink while waiting on the doctor.

OJ at the endo'sThe nurse finished her notes and I waited on the doctor. I was aaaalmost finished when the doctor walked in. He came in with his usual bubbly self and shut the door behind him and then he saw it. The glass of orange juice. “Ahhh, the glass of orange juice. We’ve hit a low I see.”, while grinning from ear to ear.  See, that attitude about him is what I love. Granted, it was kinda embarrassing to have a cheekful of orange juice for his first view of me for the day, but oh well. (He had a phone call and stepped out, so I snapped a picture.)

We went over a few things discussed some worries, talked about video games (yeah, my appointments aren’t all about diabetes), changed a few rates and his main concern was that by now, most women are seeing hard-to-treat frequent highs. I’m still seeing lows… lots of them. So, once a week, I’ll still be sending in blood sugars and also calling if there’s an immediate concern. I asked if the lows were affecting the baby, and I mentioned what my OB had said (that he was okay with the 50’s) and he said the lows were okay as far as the baby was concerned, but not me. He didn’t want loss of balance or control that could hurt me or the baby in anyway, and that’s his main concern with the lows – the potential to get physically hurt.

So, the jist of the appointment was this…. keep glucose tabs or juice with me at all times until we get the lows under control, make sure I have a glucagon kit and that Erik knows how to use it, and keep up the good work with my control. All in all, he summed it up in one statement and another one of his smiles:

“Don’t worry. You’re doing an outstanding job”.

25

I knew there was a reason I felt like I needed to throw an extra vial of test strips in my purse this morning.

After coming back from lunch, I sat down at my desk to do a little bit of paperwork. Only there was a slight problem. I started seeing spots. Big spots. Big, black spots. So, from prior experience, I knew I must be dropping low, so I pulled out my meter, only to be scared batty by what I saw.

25A big 25mg/dl flashed across the screen. I had to double take. I haven’t seen a number this low in almost 20 years.

The last time I saw a number like this, I was about 6 or 7 years old. My sister and I were playing around the house, running from one end to the other up and down the hall, running around, jumping on the bed, doing normal kid stuff. My sister noticed I wasn’t acting right and told me to stop because I was acting funny and we needed to check my sugar. I didn’t want to. I was having fun. I felt great and didn’t think I was low. She was insistent that I needed to check, and I was insistent I was fine. I don’t remember what finally made me gave in, but something did. And it was a good thing. My sugar was a measly 16mg/dl by the brick meter.

I have always remembered that day. It was so scary. After I had my low, I text my sister and asked her if she remembered my lowest being any lower. She said no, but that she thinks that was also the night I had passed out.

That shook me to my core. I can’t remember most of that night. From what I’ve been told, I went to bed with a nice 100-110mg/dl, and 15 minutes later, I was having a seizure. Mom and dad did what they could and eventually rushed me to the hospital. They said I woke up at one point, but was blind. I couldn’t see anything, and then I went back out again. The second time I woke up, I remember. I didn’t know where I was or why I was there. They had to explain to me that I had dropped too low and had passed out. They released us and I think I remember staying home from school a couple of days after that to recover and get my bgs back in line.

Granted, things have changed since then. We have better meters, I have a CGM (which I did NOT hear going off for some reason – usually lows amplify my hearing), and I’m on a pump rather than MDI, so I can change things on the fly. Yes, I know this doesn’t insure that nothing will happen, but I do feel somewhat more comfortable knowing I have a little bit more of a safety net than I did back in the early 90’s.

Now? My bg is 129. For pregnant diabetics, yes, this is a little on the high side, but I do have a correction bolus for the slight (okay, more than slight) overeating I did to treat the 25 earlier, so I’ll be keeping an eye on my bgs every 30min-1hour to make sure everything levels out ok.

Celebrate Now

After our families found out about the pregnancy, things started to really settle in. Everyone was excited for us. My sister-in-law works at a little gift shop and she even picked up this very cute ornament for me:

ornament

Celebrate now… You’ll be too tired later! Merry Christmas!

Although I don’t have a baby bump yet, nor is the baby here, I can almost agree with those words 100% already. All the getting up to pee at night, only being able to eat a little bit of food, and just the general exhaustion that comes with being pregnant is really getting to me. The little bean is the size a blueberry and already running me ragged! Haha!

But the big thing that’s getting to me is the low blood sugars. I know Kerri talked a lot about hers while she was pregnant with BSparl, and I have read some posts by other PWWD (Pregnant women with diabetes) on TuDiabetes, but I never knew the hassle it would be to keep my sugars under one number after eating, only to plummet later. I was thinking it was maybe because my diet was consisting of mainly only diet ginger ale and saltines, and that I wasn’t getting enough protein to carry me on those hours after eating. So, for lunch yesterday, I made a peanut butter and jelly toasted sandwich and poured myself a big glass of milk – something that has been a no-no for me for  a while before pregnancy because of the spike it would cause. This time? Nope. I spiked up to 126 (from a nice 109), stayed there for about an hour, and only to end up heading to the south pole. I know that the baby-forming process  uses a lot of your energy, but one would think I’d realize that energy means carbs which means lower blood sugars at times.

This week has been the first week I can really tell a big difference in my blood sugars. When I went to Dr. C on Tuesday, he was very confident that everything will be okay and that we needed to only tweak just a tiny bit and raise a few things and lower some others and we would be ok, but it seems those changes have made it worse. I’m thinking of going back for now just because the lows and the increasing nausea and the decreasing amount of foods I can stomach just isn’t working out right now. Which, I know some of it is probably because my basal/bolus ratio has been thrown off now too with my current diet.

Some of the stories I have read from others are quite scary in that they had the sickness throughout the whole entire pregnancy. For others, it came to an end as the first trimester does. I have 6 more weeks to know for myself. Until then, I’m going to try the tips that have been sent my way so far.

Thank you to everyone for your support and comments yesterday. You are the best!

It’s December, Honey!

I cannot tell you guys how happy I am for it to be December! The Christmas decorations are (mostly) up, scents of peppermint and evergreen fill my house, and it’s finally getting cold outside! Yes, I am excited about the cold weather because we don’t get it a lot here in SC. It’s usually no colder than 15° (That I can ever remember in my life!) and as hot as 115° some summers. I’m really hoping we get snow sometime this winter as well. I know all of you northerners are probably rolling your eyes at me and thinking, “Oh, if she only knew!”, but really, if you only knew what it was like to grow up and only see snow, like, maybe one day every year or two or three, you’d understand why all of us southerners get all excited when the least little flurry comes our way.

 

Otherwise, things are going very well for me on the diabetes front.My blood sugars have been pretty easy *knock on wood!* to manage, other than a few 40’s from nowhere that creep up. I swear, it only happens when I’ve walked off from my Dexcom! The last one happened untitledduring the night, and I had rolled over on top of my receiver, so I couldn’t hear it. I had to have been seriously knocked out because I didn’t feel it either! Good thing I had made some peppermint bark though the night before! That with some milk and I was good to go back to bed. I have even figured out that if I’m headed low, four swallows of orange juice from the little one-liter Tropicana bottles is enough to bring me back into range too. My next mission? To buy some honey just for treating lows thanks to a suggestion from a friend. I’ve never used it, but I think it would be one of those things we can keep in the house that wouldn’t be snacked on and unavailable any longer when I drop low. Glucose tabs have just lost their appeal to me. I get choked up when I eat them, so I need to find other things to help with lows.

 

Speaking of lows, I’m off to drink some orange juice. Happy Winter!!!