Hunger

Since before diagnosis, I’ve been almost constantly hungry. This isn’t a symptom I’ve read about in many diabetes blogs, so I’m not sure how common it is. I know “Am I hungry?” has moved waaaaaay down the priority list when considering whether to eat or not for everyone. But I have really struggled with hunger throughout my diabetes experience, and I wonder if others have too.

Before dx, I couldn’t make it through my two and a half hour grad school classes without multiple snacks. At night I couldn’t stop getting up and heading to the fridge. I ate big meals and went back for seconds everywhere I went. I packed my lunch for the day at school but ended up eating it piece by piece long before lunch time (“I’ll just eat my yogurt…and my chips…and…”). I used to get so frustrated at myself for my poor willpower, for spending so much money going out to eat.

It did get a little better after diagnosis, but I was on a sliding scale and didn’t cover for snacks for a while, because my treatment plan was not great, so my BGs stayed high and my stomach was still growling a lot. I tried to live on nuts and cheese between meals. I tried to wait until time for lunch or dinner. But there’s only so long you can resist eating when you have no hope that you’ll stop being hungry any time soon.

Once I moved to an I/C ratio (and even better, a pump!), I found that I had more times when I wasn’t hungry. I still don’t feel FULL very often. It’s so irritating to just hope for the hunger to be gone, and it’s really difficult to know when I’ve eaten enough with out many “getting full” signals from my body. Even if I do get close to full, I sometimes continue eating a little bit, overshoot how many carbs I bolused for, and go high. I find that I feel full most often when eating Mediterranean food (grilled chicken, hummus, pita, rice) for some reason. So I request we go to our favorite Mediterranean restaurants a lot! 🙂

The real game changer has been Metformin. Of course, it’s upped my insulin sensitivity as well (which is helpful for me at this particular stage in my T1D journey). But my hunger levels have really improved. It’s easier to get out of the cycle of eating, blood sugar climbing, chasing with insulin, getting hungrier, eating, blood sugar climbing… Self control is much easier when I have some hope that there will come a time when I’m not hungry.

My problem isn’t solved, but it is so significantly better. I also definitely have some tendencies to use eating as a stress management method that have come to light since diagnosis. I still have a ton to learn, but Metformin and reminding myself not to snack to feel less stressed are helping.

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The Wrath of the Sensor Gods

I use Enlite sensors. I really like them most days. I know they’re less accurate and less cooperative than Dexcom, but this is my first CGM, and it’s a lot better than nothing! They also integrate with the software to make things easy for me and my doctor to review. I do worry about whether my quality of life or management is lower because I use Enlite rather than Dexcom, but all the factors that go into my decision not to rock that boat for now are for another post.

Mostly my sensors work okay and we stumble through life together. But this week, the Sensor Gods are angry.

On Saturday, sensor change day, my sensor said I was low and alarmed repeatedly for about two hours. I was low exactly none of that time. I was hanging out between 100 and 110 and would have loved some credit for being in range. Stupid sensor.

I try to be extra generous on sensor change day, but this was particularly annoying after a low in public with my parents, who are still adjusting to my diabetes life and can sometimes be especially scared of lows, that was missed during my sensor warm up time.

Fine, sensor is wrong. By a lot. In these cases, we calibrate if we haven’t already calibrated too many times today. So I calibrated.

But nothing changed on the readout, and about 30 minutes later, my pump started flashing “SENSOR ERROR.” Not cute. Sensor Gods are clearly demonstrating their mood.

I’ve had this happen once before but couldn’t for the life of me remember how I resolved it. I was pretty sure I just had to start over with a new sensor, but I was away from home by this point in the day.

Next my pump flashes “CAL ERROR” about twenty minutes later. What the hell is a calibration error? How could I calibrate wrong? My meter sends the data directly to the pump. This seems like a personal problem to me, diabetes devices.

Twenty minutes later, my old pal “SENSOR ERROR” returns, at which point I go into the sensor settings in my pump and switch the whole system off. I was done. But the Sensor Gods were not done with me.

My sweet husband helped me change my sensor for the second time that day. (I wear CGM stuff on the back of my arms and can’t get the hang of taking out the inserter needle one-handed.)

Sensor Gods were temporarily appeased. I thought I was back to my typical, mediocre accuracy CGM life, and I was happy to have it.

And then Wednesday came. My first dentist appointment in an embarrassingly long time. And these people wanted to take X-rays. I know lots of people wear their Dexcoms in dental X-rays, but I’ve only had this CGM for 6 months and I love it too much to risk it, so I just ripped it out in the dentist’s chair. Perhaps that was the Sensor Gods’ plan all along.

In maybe the worst possible scenario, I had a low during the appointment. I don’t know at what point this happened, obviously. I went in at a cool 120. The dentist eventually said “Are you okay? You don’t look so good.” I’m increasingly hypo-unaware, and I was already lying down, but I definitely did not feel my best.

I had attributed that to my hatred of people touching my mouth literally at all in any way, but I pulled out my meter just in case. 55!

“Lololololol” – Sensor Gods.

The sweet people at the dentist’s office brought me some of their secret candy stash even though they had just finished cleaning my teeth. I also had the chance to offer them a little diabetes education (“Yes, orange juice would be good, too. No, my pump is not permanently attached” etc.).

As I write this, I’m not wearing a sensor. You have to calibrate twice in the first 6 hours with Enlite (Is this how Dexcom works too?) so I hate to put them in at night. Tonight, the Sensor Gods win and I sleep without the protection of CGM data, but with much higher chances of sleeping through the night.

But tomorrow, we rise! (and ask my long suffering husband to change my sensor early in the morning on his day off. Love you, bae.)

Tips and Tricks – #DBlog Week Day 5

Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

I was diagnosed about two years ago, so my tips and tricks are few and far between. I’ll offer what I’ve come up with, but I’m really looking forward to reading what you guys have to say!

Did you know that the fun-size bag of skittles is about 15 g of carbs? Did you know that at halloween you can buy giant bags of these guys with all different flavors of skittles? I keep these things EVERYWHERE. Everyone at work knows that if I have a low and they need to help, I need either one fun-sized bag of skittles or 4 starbursts. All of these options taste way better than glucose tabs.

Also, I hear some discussion about getting rid of the leftover blood after doing a BG check. I always wait until my meter flashes the number, pull out the test strip, and use the side of it to wipe of the rest of the blood. If I’m lucky (or feeling particularly not-lazy and go find myself a trash can), I throw it away immediately. If not, I leave it in my meter case. I still get blood on the case like people who wipe their fingers directly on it, but somehow it feels significantly less gross to me.

This isn’t a trick, but something I wish that someone had told me at the beginning was to fight for what I needed. I was so afraid to argue with doctors, and I didn’t know I was allowed to disagree with insurance companies. Of course, this is pretty hilarious to me now. I learned pretty quickly to fight for what I need, to change doctors if I have to, and to make things work for me.

The Healthcare Experience – #DBlog Day 4

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

My Healthcare Wishlist

Editor’s note: Please do not bring me down with discussions of the reality of having a financially viable, sustainable system.

  1. My endocrinologist has reviewed my charts before I get there and has suggestions for problem times.
  2. She listens to my suggestions, too, and respects my opinion.
  3. I can see a dietitian whenever I want. I have to go at least once a year. My insurance covers this with a reasonable co-pay.
  4. I can email my doctor and hear back from her that day.
  5. I spend less than $100/month on diabetes.
  6. If I go into DKA and have to be hospitalized, no one tells me “insulin is the key to the cell.” In fact, people never tell me that after one month post diagnosis.
  7. My progress and expertise is recognized in every medical situation.
  8. Every person who works in healthcare (and the rest of the people in the world) get that every person’s diabetes is different.
  9. Waiting rooms have snacks with the carb counts clearly posted. Preferably these snacks are sweets and everyone gets that I can have them so no one has anything to say about it.
  10. BG meters come with 10 test strips.
  11. People stop suggesting a stupid sliding scale.
  12. I get to continue wearing my pump and controlling (or at least having a large say in the control of) my diabetes during any other medical situations, like hospitalizations.
  13. Old people will stop saying “she’s a real bad diabetic” when they talk abut me.
  14. My doctors all have a common charting system where they can easily see when I last visited a certain specialist, their notes, etc.
  15. All my doctors will either schedule 8:00 appointments with me forever, or they’ll work out a magic system where I go quickly from one of them to the other and never wait.

Language and Diabetes – #DBlogWeek Day 3

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

Terms aren’t quite as important to me as I thought they would be. I always say I have diabetes, not I’m diabetic. I prefer PWD, but diabetic isn’t so terrible either.

Here’s what I think is really important about language and diabetes: placing blame. The words “control” and “non-compliant” are particularly difficult. I can “comply” all I want, but if I don’t have a doctor who encourages me to make adjustments to insulin/carb ratios, basal rates, and correction factors, and if that same doctor won’t make adjustments themselves, I’m not going to see in-range BGs. Complying with a treatment plan that doesn’t work for me doesn’t do much for anyone. I can try as hard as I want, but diabetes isn’t something we can just “control.”

I know a lot of people suggest “management” as an alternative for control, and I guess that’s better. I still feel like it leaves a lot of room for blaming the PWD for not managing things that are outside their control, though.

There has to be a better word than “non-compliant” for someone who can’t afford their medication or supplies, who just can’t look at one more BG number, who’s digging themselves out from diabetes burnout, who got the flu, which led to DKA. What if we just talked about the numbers? “This patient has an above-range A1C.” “This patient’s BGs have been above their target for several days.” Why do we need to describe them as a person, rather than the constantly changing numerical measurement of their disease?

I know lots of medical professionals don’t perceive PWDs with high A1Cs as irresponsible even if they use the term “non-compliant,” but lots do. The term isn’t helping to end things like doctors, nurses, RDs, etc. thinking that there are “good diabetics” and “bad diabetics.”

When someone has cancer that doesn’t respond to treatment, we don’t say that person is non-compliant. When someone has Celiac disease and tries as hard as they can but gets gluten from cross-contamination in a factory or a restaurant kitchen, we don’t call them non-compliant. Even when someone who takes pain medication as prescribed ends up going down a path he don’t want, we look at how doctors can do better. How we can make safer rules to keep things like that from happening. I’m awfully thankful not to be in any of those situations and certainly don’t want to compare myself to someone struggling with another disease, but I do want us to think about how we see diseases.

Bodies fail. That’s how we got here. I wish we would talk about the scary diabetes moments as body failings, not personal failings. It’s so much harder than you think if you’re not doing it every day. It’s so much easier to make a mistake than you could ever imagine.

The Other Half of Diabetes – #DBlogWeek Day 2

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

When I was diagnosed, it was extremely surprising. I was pretty old for T1D, didn’t know the symptoms, didn’t really know anything about it. I told a lot of people immediately (a decision I sort of came to regret) and got a ton of different reactions.

I think my favorite one was from someone who mentored me during the school year leading up to diagnosis. It hadn’t been an easy year, in a grad program where I wasn’t happy, realizing that my career goal of teaching college wasn’t going to work out. She’d seen me in some pretty sad days.

When I told her how hard T1D had been so far, she said, “But you’re so resilient.” She didn’t say it the way people say stuff like “You can do it!” or “You’re so brave to poke yourself with a needle every day!” She said it like it was a fact she was reminding me of.  That I had always mana ged to keep putting one foot in front of the other. Diabetes wouldn’t be any different.

I think that’s true, but this disease still takes a huge toll on me mentally. I’m constantly doing math and worrying and checking my CGM and believing or not believing it and guessing and worrying some more.

I’ve got some perfectionist tendencies, and that does not go so well with diabetes. It does keep me from going out of control most of the time, but it also makes me feel like even my biggest accomplishments get maybe 30 seconds of celebration before I have to be back at it.

For someone who needs to feel like she’s in control and good at things all the time, diabetes is a huge challenge. I’m having to learn for maybe the millionth time that I’m not in control of everything in the universe, that sometimes bad things happen even when you do everything right, and that mistakes don’t make me a bad person.

Diabetes gives me constant numerical scores every day that make me feel like I‘m being graded, like I can pass or fail. And somehow along the way, I associated passing with being a good person and failing with being a bad one. I can’t tell if diabetes is reinforcing this or helping challenge it. Maybe both.

I hope that I’ll learn to deal with it more as time goes on. Diabetes is the focus of a lot of my anxiety, but hopefully I’ll come to a point where I feel comfortable living in maintenance mode. I’d like the option for diabetes to just be in the background some days, and I’m getting a whole lot closer to that happening.

Message Monday – #DBlogWeek Day 1

I’d say this diabetes blog is still just a baby, but I thought I’d try to get a jumpstart by participating in Diabetes Blog Week. If you haven’t seen it before (though I suspect if you’ve found me, you found me through this), Karen at Bittersweet Diabetes chooses topics for the week, and diabetes bloggers across the Internet tackle the same topics on the same day. Today’s prompt is “Message Monday.”

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

So since I’m new to diabetes blog world, I don’t think I know the answer to this question. There are a couple of reasons I decided to start blogging. Mostly, blogs have been incredibly helpful to me in the two years since I was diagnosed. I don’t have any diabetes friends, so the blog world is the only thing that can give me a window into someone else’s experience. And the only place I can go for advice for my peers.

That’s why I read blogs, but I started writing partly because I felt like I needed to be writing more. Since I think about diabetes roughly every 5 minutes every day, it seemed like a natural subject matter choice. I studied English in undergrad and graduate school, and I work in the media now. But I don’t do nearly as much writing as I used to, and I want to do more. There’s no better way to feel inspired to write than to do more writing.

So I think what I want from this blog is a place to tell my story mostly for myself. I hope it’s helpful to someone else and it makes diabetes seem a little more normal and the burden feel a little less concentrated on just you. But mostly I’m planning to write for me, to give me a place to work through the crazy emotions that come with something that takes this much work. And I hope I find some T1D friends! Even if I can’t see y’all in person, to have some people who get it in a first-hand kind of way seems pretty freaking amazing.