The "right" way to talk about diabetes?

how many basal patterns do you think you’d need to program in your pump to roughly capture your basal needs at each normal stage of your cycle?

I apparently Sugar Surfed before I knew it was cool.

I have two Basal Profiles: Weekend, Work Day

My theory is that if I get the correct “shape” of my daily basal needs, then it is the magnitude that I need to change based on daily insulin resistance or insulin sensitivity. I basal test during Days 7-11 if I need to check the shape. Otherwise there is no point (You could, I suppose, keep an eye on routine rises and do the math to get to your “base” basal rate…but I don’t do it that way. Too much room for diabetes error, IMO.)

My typical results are here:

I hope my response addressed what you were asking. If not, please let me know! (I’m amused that me posting tonight is Days 7-11 but original post is 8-12…ball parks for Diabetes.)

2 Likes

I don’t know, @Eric, my butt podding experiment is going really well into Day 3.

So does this mean you won’t animate a successful, glowing, FUD butt for me in celebration tomorrow? #askingformyself__

3 Likes

I will do an animated butt gif especially for you, as long as the admins will increase the file upload size restrictions for it. :grinning:

Dang you guys are just baiting me. :joy:

2 Likes

Don’t blame the admins…I know you can figure something out!! :rofl:

1 Like

Pictures @Eric creating a “poked in the butt” meme…

4 Likes

This is exactly what I do as well. I adjust the “shape” as-needed based on trends. But then I adjust the entire basal profile up or down based on how much I think I need. And it’s hard, becuase my basal needs (and other insulin needs) can go up or down by 25% overnight. And I’m never sure by exactly how much it’s moved or by how much it will move in total (sometimes less than 30%, sometimes approaching 100%).

I also find week two is my only stable week. It’s the only time I truly feel in control of my diabetes, and sometimes I forget what day it is and I start thinking, “WOOHOO!!! I’ve finally got this after 25+ years!!! I can keep this up forever, no problem!!!” Then week three hits and, nope. Back to readjusting everything and just trying to figure out the basics before they change again.

I hope you post about your birth control experiences in the women’s category. We seem very similar and I’d be really curious to hear how it works out for you.

2 Likes

Everything you said x1000%!

1 Like

I love this sentence so much. Your entire post, and other posts on this topic, are sooooo good. I want to walk without falling. That is my Unlimited.

2 Likes

That is so true. I may be repeating myself, but the inherent unpredictability can be for me the biggest frustration of diabetes. And where there isn’t a pattern, that frustration just isn’t worth the energy.

Just as an aside, men are not immune, though of course the effects are minuscule in comparison. When I lived in Vancouver in the mid-1980s, I had an endo, Jerilynn Prior, who was interested in the role of hormones in women’s health (and went on to specialize in it exclusively, to great acclaim). When I’d end up in ER with DKA each fall, she introduced me to the idea of seasonal hormonal changes regardless of gender. To this day I need to slightly adjust my basals in the fall, even without seasonal changes in activity or diet. It’s so predictable that for a while I’d even put it in my calendar so I’d be ready for it.

3 Likes

Interesting. I also require different basal rates and ratios during the fall and winter (usually I make the change in late October) and less during the spring and summer (usually I make that change in May). I typically need more insulin during the fall/winter and less during the spring/summer. I hadn’t realized hormones had any impact on this, though. I thought it was just temperature changes and changes in activity levels.

4 Likes

Very interesting.

I asked about seasonal insulin sensitivity changes at my local JDRF Summit. The very awesome pediatric endocrinologist who answered said it was due to local temperature changes and insulin works faster in the summer when it’s warm.

I thought that answer overly simplistic for my question…b/c we live in a climate controlled world. If I lived without air conditioning in my home, my office, and my car, then I’d buy it. I don’t buy that as the whole answer and it seems you’ve been given another piece of that puzzle. :+1:

4 Likes

_It’s so predictable that for a while I’d even put it in my calendar so I’d be ready for it.

I feel like that’s a great idea. We have this problem – a pattern emerges (say sick-day spikes mid-afternoon, or after traveling basal needs are higher). it seems so important. and then we forget to remind ourselves about it in some way the next time we’re in the situation.

1 Like

WHAT? Why have I never heard this before?

I run lower basals in the summer then come fall they climb - even when I maintain the same amount of activity. Then they taper back down in the spring.

I am running summer basals now.

4 Likes

You know, that’s been my line. And as I said in my response, it is my gut reaction, but then I am an example of a diabetic who is “healthy” and strong, fully capable and competent, and who is achieving the things I have an interest in achieving. I’ve got a lot of energy, and, believe it or not, a lot of positivity. So I may say at first, “yeah, that sucks”, but then I’m onto all the things you’ll figure out and how you’ll get by, how it’s great to be diabetic in the year 2018, and so on and so forth. It’ll be a mix of jokes, sarcasm and even a serious tone. This is how I am, and this really is how I feel about my disease…

BUT. With all of that being said, I heard you. And what I heard you say changes everything. It didn’t occur to me that hearing, “that sucks”, which seems simple and benign, could be the cause for concern, or worse, discouragement. I don’t want to come bearing that gift, and I won’t say that to a newly diagnosed diabetic again. I’m really glad you shared this. :slight_smile:

2 Likes

However, I was googling compulsively at first looking for any sign of “this is going to be ok” and I kept reading the words “having diabetes sucks” on social media, and was so discouraged by that.

@kpanda01 @nickyghaleb I remember when my son was first diagnosed, all I could think of was a mini-documentary posted on the New York Times called Midnight, Three & Six that I had somehow seen the year before. And let me tell you, it made me cry for days. It painted such a bleak picture of the disease and now that I see it, I feel it’s almost irresponsible because life really isn’t as bad as that, at least for us. I mean, yes, this is one family’s experience and it’s clearly very full of vigilance and worry day-to-day. But really, for us, most days feel mostly…normal.

I feel like if we’re not careful about how we present living with this disease day-to-day, many people dealing with a new diagnosis can get very, very discouraged and frightened.

It’s a tough balance, though, because some days are tough, and if you cant vent to your fellow Ds who are in the trenches, where can you vent?

6 Likes

To your fellow Ds who are in the trenches… that’s where it belongs. Don’t get me wrong, it doesn’t change how I feel about this disease… it can be tough, but it changes how I communicate with a newly diagnosed. If they take one thing away from our exchange, it’s going to be that this is not okay. And it is okay. Today. Yesterday I was throwing things. Later I might be throwing things. :grin:

@Nickyghaleb @TiaG I certainly hope I didn’t come off like I’m telling someone else how to talk about their own experience. Because every person’s experience is of course different and so are their feelings toward it. And who are we kidding, of course there are moments where we want to throw things. I have a tendency to get a little carried away with things, and in my mind, I guess “it sucks” sounded like EVERYTHING was going to suck. Dramatic much? :slight_smile: Personally, hearing “it can be really challenging” or “it’s not always easy” would have been easier for me to hear. I wasn’t as afraid of a challenge as much as I was afraid of being miserable. On the other hand though, we’re all different and I’m sure there are people who need to hear others say “it sucks” from time to time.

3 Likes

Meant to say also @Nickyghaleb that it’s so thoughtful of you to take those comments to heart. Just one of the many reasons I’ve gravitated toward this particular forum. So much thoughtfulness goes into what you guys have to say.

3 Likes

You didn’t, and you could’ve stopped at that line. Everything else was explaining yourself, and even backpedaling, for saying something that you felt. Please don’t do that. If you are worried you’ve offended someone or made someone feel bad, I can assure you that, on my end, you haven’t. I was really glad you said what you did… it gave me another perspective, and I meant it wholeheartedly when I said I don’t want to spread even one ounce of that kind of thinking…I can save that kind of talk for the people who are well-grounded in their understanding of the disease. They can handle it, and they can even knock a little sense into me.

I’m getting preachy again… but I’m gonna nip it. I’m glad for your words. They’ll help me in the future be more aware of mine. In a really good way.