Living in the Orange:  When Diabetes is Tough

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Diabetes is hard these days. I am usually a good problem solver and lately my usual fixes aren’t working. I am seeing patterns that differ from my normal ones. I am not sick. I am not on new medications. I am long past menopause and don’t think I’m dealing with raging or sagging hormones. Other things are sagging but that is a different story for a different day and a different audience.

I’m seeing large spikes after appropriately-bolused moderate-carb meals. My post-breakfast walks are not ameliorating morning blood glucose rises. I am giving ineffectual correction boluses all day long. My numbers climb on 6- to 10-mile hikes. The new pump profile “More” and its bucketfuls of insulin has not made a noticeable improvement.

I haven’t gained weight in recent months, but I do weigh almost 10 pounds more than 4 years ago. My doctors like that but my clothes don’t. My daily average steps are less than in previous years but arthritis and a recent bout with plantar fasciitis have dictated that I pay attention to sore joints. Abby the Black Lab will be 12 years old on Thursday and our walks are shorter than last year. And the year before. Some days we walk and I drop her off at home so I can go farther.

An old dog and an old lady.

But definitely some physical changes that might warrant more insulin.

I am frustrated with my diabetes technology.

Despite being a huge fan of my Dexcom G5, I go crazy with alarms claiming my BG is 48 and it is 98. With alarms that scream 189 when my meter says 140. With alerts that declare 240 and it is…240. And alarms that alert for BG’s of 52 and although I feel fine, my meter says 52. I accept, but hate the Medicare requirement that I use only my Dexcom receiver and not my iPhone, Apple Watch, and Tandem pump.

My pump was replaced a month ago due to a failing battery. Yes, I am still not on board with a rechargeable pump and yearn for the security of carrying extra pump batteries in my meter case. The new pump has an unresponsive T-button which means that every time I turn on or off my pump screen, I have to push the button once. Twice. Sometimes four or five times. The Quick Bolus feature rarely works because I get error messages of too many button presses or it just times out when the final push to deliver insulin doesn’t work. There is a possibility that I will be getting a replacement pump but unfortunately Tandem has changed the T-button to a “two-pronged design” and a new pump might not solve the problem. Facebook tells me that I am not alone in the woes of a stubborn, mushy, unresponsive T-button. I don’t know why Tandem changed the button design but I do know that whatever problem they solved created another. The T-button is the gateway to every interaction with my pump. When the T-button is problematic, my pump experience is problematic. 4 weeks of practice with the new button design has only marginally improved my success rate.

Five years ago when I was cruising in the “Doing Okay” zone of diabetes, I wrote a blogpost titled “It’s Not as Hard.” I concluded that “I think the reason I’m feeling good these days is that my hard work seems to be having good results.” By substituting a few words, I can describe my mindset these days. “I think the reason I’m feeling bad these days is that my hard work seems to be having bad results.”

As anyone with diabetes knows, it is hard to keep making good decisions when the numbers don’t reward the work. If a 12-carb cup of applesauce spikes me to 250, I might as well have Nutter Butters or Oreos. I have definitely fallen into this pattern and thus am not an innocent victim in my diabetes distress.

I know that I need a total reset in my diabetes life and things that have worked in the past include severe Dr. Bernstein-like carb restriction, the Whole 30 diet, and the untethered regimen. To be determined….

Part 2 of the Story

I wrote the earlier section of this blogpost on Friday morning and decided that since I do not entirely trust my pump and insulin absorption that I would choose the untethered regimen option. This plan entails taking a certain percentage of basal insulin by injection in combination with pump therapy. As of Friday evening I am taking 3 units of Lantus at both 7:00pm and 7:00am with the remaining 50% of basal coming from my pump. My blogpost “Building a Foundation with Lantus” gives a good description of the untethered regimen and provides links to other blogposts and articles on the subject.

How is it working? Amazingly well and on Saturday morning, I immediately began seeing some familiar flat lines between meals. The unexpected and unjustified spikes are gone. No doubt I am being careful about food choices but that didn’t make a significant difference in recent weeks. Once again I marvel at how much easier my diabetes is when I combine injections and pump therapy. Too bad it is so much more work.

I think a stable base from two daily Lantus injections protects me from absorption issues with my pump. I am taking slightly more basal than previously and maybe that’s the only difference. I am at a stage in life that I might consider going back to MDI (Tresiba-ready?) although I’m not psyched to abandon the convenience of bolusing with a pump. Ironically Basic Medicare with a Supplement plan makes pumping a much cheaper alternative than injections.

For the moment the arrow on my dia-bete-meter has moved from “Kind of Crappy” orange to a familiar place between “Okay-ish” yellow and “As Good As It Gets” light green. This zone isn’t perfection but it is an area where hard work and good decisions usually reward me with reasonable BG numbers. That’s all I can ask for and I am doing better today than a week ago and a month ago.

One small change in insulin delivery. One big improvement in BG numbers and emotional health.

25 thoughts on “Living in the Orange:  When Diabetes is Tough”

  1. Hope the untethered regimen works for you for the foreseeable future. Personally, I’m dealing with a bad bout of dawn phenomenon, and when my pump warranty expires, I might just go back to MDI if I can get a prescription for Fiasp. Good luck!

    • Amazingly my dawn phenomenon disappears when I add Lantus to the mix. Is it just more basal or is there something magical about two sources of basal? I look forward to reading about your experience when (if) you get Fiasp, Stephen.

  2. So sorry you have been having some speed-bumps. I’ve been a bit all over the map with highs/lows as well, but am hoping it is just my indulgence of “watching every bite I eat … and I’ve eaten too much.” I’m going to read about your Lantus assistance.
    You are an inspiration for me and it helps provide so much educational information.
    Take very good care of yourself. Best wishes and Cheers.

    • Thanks, Nolan. I’ve also enjoyed getting to know you as we journey through Medicare with T1. Always lots to learn.

  3. Me, too. And my pump warranty expires next week. I am not ready to choose and/or start the fight with Medicare. There are moments I’m tempted to go to MDI – maybe for awhile. I need to go read your “Building a Foundation…” again.

    • Are you still on your Animas pump? I do wish that Animas had not gone out of business because we need more choices. But they were not doing a good job of keeping up with the times. I’ve never tried Tresiba but there are certainly people who have never gone back to pumping after using it as their basal. Let me know what you decide.

      • Yup – Animas warranty ends tomorrow. I’ll miss it. As of now, I’m looking at T-slim so your experiences kinda worry me…

      • Colleen-I talked with Tandem again on Tuesday morning about the button problem. Customer service was great and a new pump arrived yesterday. And the T-button works perfectly so I did have a defective pump. I would choose the X2 again over the other available options.

      • I have been on a pump most of the time since 1997. 3 Medtronics, and 4 years ago switched to tSlim… about to pull the trigger on the X2. Glad I found your blog and got to read about your experiences. Also very pleasantly surprised to learn that Medicare will pay for Insulin Pump therapy!!! I recently wanted a break from my pump and tried Tresiba. I liked it for a time, but then randomly began experiencing lots of lows and some digestive distress, which I am not certain was related to the medication change. I also had lots of other factors going on in my personal life, so I can’t chalk it up to that. But I did note that is a listed side effect, although my doctor insisted it could not have been related. The Triseba does have something like a 45 hours half life. So I loved that if I accidentally went to bed without dosing the Triseba, I could take it the next morning or actually just skip the dose altogether without much effect (1st day after missed dose being normal BG readings, 2nd day after missed dose being only slightly elevated). But I did experience a very scary low situation, which I’m honestly not used to dealing with lows hardly at all. But I was actually out with my son and called someone to pick me up because I was afraid to drive due to eating a lot to correct the low and barely keeping my sugars stable for about an hour long period. I’ve never had to do anything like that before in my 28 years with Type 1.

        I’m so glad to have discovered your blog and look forward to reading more in the future. If there is ever anything I can do to answer Tandem questions or anything else, feel free to contact me anytime!

  4. Boy do I hear you. Well said! This roller coaster is our life. I am in the crap zone too once n awhile and it’s frustrating. For me this happens when I screw up with carbs and carb counting (which I find beyond frustrating in itself). I do mostly quite well with full metal Bernstein and for me seems to be the only method that keeps me sane. I love Tresiba by the way. However like you said….I don’t love paying for it on Medicare.

    Happy to hear that you are back in the better zone.

    • I don’t eat a huge number of carbs but I have never been able to stick to a Bernstein level of carbs. The main reason for that is I hate to cook and pretty quickly I get tired of eggs for breakfast every day. I know that there are plenty of interesting and tasty meals that have few carbs but I need someone to fix them for me…. I hope to get a Tresiba sample at my next endo appointment and give it a try.

  6. Interesting about the lantus and pump. I don’t understand why Tandem won’t quickly replace that pump. I’m annoyed from afar. When you were saying living in the orange – it made me remember the clinitest tablets and bubbling orange results…..Love your articles.

    • Although many people diagnosed in 1976 used Clinitest, I never did. But I have sure read about the bubbling orange. I immediately used Diastix and got to see the dreaded dark brown. Thanks for reading, Susan.

  7. I’m so sorry that you are having so many difficulties with diabetes these days. I’ve had many days when I would put myself in the “Argh!” Category of that meter in your post. I am currently in the euphoric honeymoon stage with my newly-acquired and first-ever CGM and this evening could easily park myself in “As good as it gets”, maybe even “Cured”. Silly self! Your post has put a pin in my delusional balloon. I have been frustrated by outrageous highs in the past when my “compliance” has been absolute. I have abandoned “perfection” in response and eaten things I should not have eaten only to be rewarded with better glucose numbers. I am happy to have this new tool in my hands, I think it might be realistic to hope that I will not have to face a surprise LO (less than 20) or HI (over 600) again. Please, let that be realistic. I, too, am an old lady with an old dog. After I read that you cover 6, 10, even 14 miles at a go I have stopped saying we’re going on hikes and revised that to walks and the little dog, who will be 15 years old very soon, does most of that in a stroller these days.

    I didn’t know that injecting Lantus while pumping was an option. I also had to look up Fiasp.

    • Thanks, e-i, for your thoughtful comment. It’s a good reminder that we’re not alone with our diabetes and there are lots of us trying to get it right. And lots of us old ladies with old dogs….

  8. Lantus is such a terrific insulin. I find when I use it as a supplement i tend to use more total insulin and have fewer lows. My doctor suggests it as a supplemental for all pump users.

    • My endo sometimes thinks the untethered regimen is a great idea. Then at other visits she thinks I’m crazy due to the extra work. The longest I’ve ever stayed with it is 4 months so it is not a constant subject of conversation.

  9. Just found your blog (while looking for some info on the Tandem tSlim, which I just started last week–I was an Animus user.) This post really struck me–I’ve been T1 since I was 8, and I’m going to be 45 in a few months. I was also diagnosed with celiac four years ago, so I’ve hit the autoimmune jackpot, I guess. When you talk about Dr. Bernstein–who do you mean? Because I think my endo is his replacement. 🙂

    “Diabetes fatigue” makes perfect sense to me. I’m really, really over it . . . Thanks for this great post (and your informative Tandem post.) I’m starting to have some concerns about the micro-delivery myself, though I think it has helped me in other ways.

  10. Laddie: I saw this post several weeks ago, and finally made the time to respond. As usual, it was a great post. I always learn so much from you and from your replies to the comments. I am truly a total illiterate diabetic. I had to look up Dr. Bernstein (I have ordered the book), Tresiba (is it really also for T1Ds?) and Fiasp (sounds great but not clear if it can be used in pumps). Your account of your BG rollercoaster before implementing the Lantus routine sounded very familiar. I have been having many of same issues – pump not matching finger prick, unexplained highs & lows, etc. I was getting paranoid in suspecting faulty insulin. But then for no reason, I have days when everything is somewhat normal. Eager to have you return to MN even though snow has not yet melted. Jan

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