Thirty-four years and counting

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Today marks the 34th anniversary of my diabetes diagnosis. I’m amazed that it’s been that long. The doctor who diagnosed me was a young general practitioner who could have easily diagnosed me as a T2D (I was 30 years old.) and diverted me down the unnecessary cascade of type 2 drugs and further hyperglycemia.

Looking back I realize that my slow onset of T1D started the year before. I remember a downhill skiing skin abrasion that seemed to take forever to heal.

That young general practitioner doc said something to me that stands the test of time very well. He told me that people who do well long-term with diabetes are usually well-educated and have an ongoing interest in learning. I’ve learned that diabetes does respond positively to knowledge, curiosity, and persistence.

While I did adopt an insulin pump at year three and always did a lot of finger-poking, I can see now that I finally broke through in my diabetes treatment in year 28. That was the year I received a diabetes complication diagnosis that put my motivation to treat my diabetes into high gear.

I started eating a low-carb high fat diet and was astounded at how well it worked. I began to upload and analyze daily my diabetes data from my CGM, pump, and meter. Some people might see this as obsessive, detracting from enjoying my real life. I concluded that I would not enjoy the non-diabetes part of life (family, friends, hobbies) if my diabetes life rudely displaced my attention away from the things that make life worth living.

People may look at my routine and conclude that my time and focus on diabetes is obsessive. I see my diabetes routine as a paradox. The more time I focus on diabetes in the short run the greater the return in the long run. More time spent now repays my time when those new treatments are incorporated into habit. In the end, I actually spend less time on my diabetes and feel better.

I found that time devoted to better treatment paid me back when I felt better with more energy, more often. I encourage anyone who has struggled with dividing their time and energy between diabetes care and the rest of their life to give their diabetes more time in the short run. I’ve found that it pays huge dividends. My only regret is that it took me 28 years to learn this lesson, but learn it I did. I’m certain I’ve not only added years to my life but I’ve added quality as well.

Here’s a list, in no particular order, of the most important items that improved my life with diabetes.

  • An insulin pump and the lessons I learned to operate it well.

  • A CGM to watch and learn the how and why of my blood sugar traces.

  • A low-cab, high fat diet that taught me the value of fewer carbs = less insulin = smaller mistakes.

  • The value of hanging out (online and offline) with my diabetes tribe.

  • The value of daily monitoring my diabetes data. I discovered that the mere act of observing this data subconsciously motivates me to make it better.

  • Closed loop insulin dosing systems are a big deal. My use of Loop improved all my numbers with less effort.

Well, I could go on and on but I’ll spare you the effort. I’ll celebrate this day by taking a long walk on a relatively warm winter day. Thanks for reading!

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Hi Terry, thanks for sharing, I think pretty much the same with your key points, and settled into routines that work for me.

Everyone needs to find the balance that is right for them, with each unique set of circumstances, and may differ at different times in their life.

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I agree with this and also wish that I had struck a different balance much earlier in my diabetes journey.

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I have had a similar diabetes journey. Diagnosed at 26. Devastated!! For 20 years I went through the motions of diabetes care, taking shots and testing not very often and not really paying attention to the whole thing. Then one day, I literally thought I was going to die. I felt like I couldn’t go on another day with things the way they were. I was sick and tired of feeling sick and tired.

So I made the decision to turn it around. I adopted a lower carb lifestyle. Started checking my blood sugar way more often, six to eight times a day instead of once or twice a day. I asked my dr about new insulin therapy and made some changes there.

I’m at year 32 and still going. I have some vision issues to deal with but I have a good eye dr who is doing everything he can to keep my eyes going.

I too wish I had taken it more seriously when I was first diagnosed. But, I was mad at the world about it for so long. I couldn’t listen to anything about it. I didn’t want to hear it. It was so upsetting.

I have two adult daughters. Looking forward to being a grandmother some day and enjoying all that goes with that. I hope to be in good health when that time comes.

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You do an amazing job managing this Terry :blush::clap:t2::clap:t2::clap:t2:

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Thank you for the list. I am a type 2,25 Years. Good information. Nancy

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Hi Terry, Good information. I just don’t see a pump in my near future. My major fear of needles now holds me back. I am struggling with the eating and trying to adapt a low carb diet. It’s not easy. Trying to get help with that. I do test my sugar more then 8 times a day now. I am working on all this because I want to be here to celebrate 30 plus years.

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Have you looked at any of the insulin pump infusion sets that conceal the needle and application is triggered with a simple squeeze or push of a button? The Inset 30 is one such infusion set. There are others. I don’t presume to know what you face as I don’t live with that fear and I know it’s real.

How long since you started a low-carb diet. Extra sodium can help with any physical symptoms. Some people drink bone broth to help.

Don’t ever let anyone, including doctors, tell you that is too frequent to test. It’s not. The more you check not only helps with the present but also teaches you how your glucose metabolism works. It’s your job to learn your own unique metabolism and figure out tactics to allow you to deliberately drive your blood glucose where you want it to go, at least some of the time!

Good luck.

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Terry that’s great. It’s nice of you to share. It’s good for people to see what has helped others keep things in control . I have been Type 1 for 21 years and definitely have struggled. I find my story funny now for some reason. I definitely shouldn’t though. I was diagnosed at age 17 with a blood sugar of 584 as a Type 2 Diabetic. Lol. I went to a walk in clinic after feeling really nauseous and having lost 20 pounds without trying. That doctor also questioned if I could be pregnant which wasn’t possible. Luckily for me I worked for as a file clerk for a specialist and she told me I actually was Type 1 and had me set up an appointment with a Diabetes clinic. I’m lucky I didn’t end up in the hospital or worse.
The amount of technology and information available now a days is unbelievably great. I will definitely say a knowledgeable specialist is important too. Up until 7 years ago I didn’t realize the differing needs of insulin from person to person or women in general. I was seeing a “non-helpful” Endo before who had my sugars going from 20 to over 400 in one day. He didn’t realize that Levimir insulin might not last a full day. He also didn’t listen to my concerns and seemed to think I was at fault. So I went for long periods without any insulin in my body. Currently, my CGM definitely gives me peace of mind and has helped me so much.
Well thanks again for your story. It’s good to hear positive views from people.

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Terry. I have tried so many low carbs but not getting much help. I went to a diabetic class and they were more interested in me going on a pump to any low carb diet. Do a lot of reading up on it. The needle issue with the pump is the needle in general. Long story short my husband spent a month in icu. And the stuff I saw has put this terrible fear into me. When I became insulin dependent that was the last straw. It would take hours to give myself one shot. I am better now but the fear is there. I argue with my endo over this a lot. I test a lot and take small amount to cover but it’s not been too good lately. I want these sugars down near 100. They are closer to 200 plus too many times. I read everything I can. On this. I have to stay healthy. This is always on my mind. I really want to do everything I can to succeed. Thanks for your help

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Issues with needles is one of the reasons that some might try Afrezza. I can handle one basal shot/day, but was dreading more intrusive bolus regimen (either MDI or pump). Afrezza turned out to be great for me. Now I just have to get through the CGM insertion each week.

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people who do well long-term with diabetes are usually have an ongoing interest in learning. I’ve learned that diabetes does respond positively to knowledge, curiosity, and persistence._ Says a more than a lot

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Kathy Like Terry said the Inset 30 does not show a needle when squeezing a piece of plastic. yes you feel it but it is over in a flinch. I know the fear you have when I started 50+ years ago with shots the smallest needles were .109"(2.77mm) in diameter . This caused a lot of pain and 45 years ago you used the front of your upper leg. One shot in the left leg that hurt would make you give one in the right, but when that one also hurt you had no option to just do it again and push through. Then when we went to MDI 20 years later the needles got better 0.050"(1.27mm) and more selection areas on your body. Now today the needles are 1/10 in diam. of what they used to be and a finger prick hurts more that a shot. The current insulin needles are 0.01025"(0.2604mm) and that is a lot better then when I started and should help you getting over your fear.
One other thing is to ask for help from a family member that could help you give you the shot (you prepared and less fearsome when you don’t see it coming), my wife has over the years given me shots many times or placed an inset for my pump.
Believe me no matter what your fear of needles is it must be lower than your fear of dying as that is/will be the result if you’re not taking insulin shots when you must, as a Type 1.
Bottom line I have given myself more than 21 thousand shotS during the last 50 years of having Type 1 Diabetes Mellitus and due to that I’m not less healthy than any other 65 year old.

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Needle phobia is not uncommon. Have you tried therapy to see if somebody is able to assist you in either getting past or at least managing this better? As with many things, some people will certainly respond better to therapy than others and IMHO to a large degree it does depend on the therapist.

There would seem to be no downside to trying therapy?

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Terry, you are a champion and a good teacher. Happy Diaversary!! I enjoyed reading your post. My summary would be very similar, but it was almost 50 years after diagnosis before I had access to the insulin and devices I needed. I hope that you will have many successful years ahead!

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“The more time I focus on diabetes in the short run the greater the return in the long run. More time spent now repays my time when those new treatments are incorporated into habit. In the end, I actually spend less time on my diabetes and feel better.” How true that statement is, Terry! Congratulations on your insight and your success. Diabetes is something to learn to live with rather than something to reject or to fight. Your lifestyle and (relatively) good health attest to the fact that you have learned to live with diabetes as just a part of who you are. The other parts seem to be a warm, sharing, intelligent, helpful man. May you have many more anniversaries and you continue to learn and to manage all parts of your life.

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Kathy, have you looked into the OmniPod? You never see a needle go into you at all. The only needle is the one you stick into the insulin vial to draw out the insulin. Then you stick that needle into the Pod to fill the Pod, not into you. Once you place the Pod on your body (like putting on a bandaid), you simply press a button on the PDM. The machine does the rest. It inserts and withdraws a needle in a fraction of a second, leaving the plastic cannula in place. Many times I feel next to nothing. At most, I feel like someone snapped me with their finger for an instant. Once the Pod is on, I often forget it is even there! Each Pod lasts for three days, so you have one pick in three days rather than multiple injections each day. I love my OmniPod. I have no wires to deal with, can leave it on through showers and swimming, and only change it 10 times a month. My control has been very good, and adjustments are easy. Please read about the OmniPod and see if it might be right for you. A pump has given me much better (and easier) control, and it has improved my life immensely.

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Hi Terry, your honesty and attitude are infectious, and I always come to this tribe looking for your thoughts and comments. You’re a gift to Tudiabetes. Happy D-Day!!! Over the years of having it, I’m still amazed by the irony that submitting actually frees me. I think it took longer for me than many but it only matters that we’re on the road trying. Stay well and keep writing! Best, Kim

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Thanks for your generous remarks, Kim!

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Your story is terrific inspiration. Love your upbeat attitude. Thanks for the share!!

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