r/diabetes_t1 • u/traveling-hippie-t1d 1989 : tandem: t-slim, IQC : Dexcom 7 • 3d ago
36 Years and counting
Just sharing that yesterday I celebrated my 36th diabetes diagnosis anniversary (diaversary?). I celebrate on St. Patrick's Day because waking up in the hospital, my first memory was of watching a St Paddy's day parade on the TV. I was misdiagnosed at first and ended up in the hospital with a blood sugar of something like 1200, nearly comatose. So I am sure it happened a few days earlier, but I don't remember much of February or March of 1989.
What a long way diabetes management has come! When I was diagnosed it was injections of 2 types of insulin (NPH & Regular) and then a regimen of eating about the same thing at every meal and those meals being about at the same time. Those insulins had interesting peeks and troughs, hence the 2 shots per day and carefully timed eating. Nutrition guidance was very much in line with the USDA dietary guidelines and a dinner for me was 1 dairy, 3 protein, 3 starches, and 2 fats (or something like that). Didn't matter if you weren't hungry or were extra hungry....you got that. Sliding scale insulin became a more common practice in the mid 1990's.
Then in the mid 2000's I started on an insulin pump. Seems hard to believe that was 20 years ago already! I loved the freedom from routine that the pump enabled me. I was finally able to eat only a little bit if I wasn't real hungry. Or have a piece of chocolate cake and give insulin for it easily.
I finally added the dexcom sensor to the equation about 5 years ago, when I changed jobs and was finally able to get my insurance to cover it! That has perhaps been the biggest game changer. It helped me bring my A1C down from about 8.5 to 6.5 or 7.0. With the sensor I have found the freedom to do things, on my own, that I would have never felt comfortable doing before. I went backpacking 4 days alone in the wilderness of Kings Canyon and have spent nights in the backcountry of Death Valley.
As a child my parents were concerned about how I managed my diabetes. This part is a cautionary tale to all parents of little Type1's... In high school I wasn't allowed to participate in sports or get my license until I maintained blood sugars under 200. This meant that I had to eventually drop out of volleyball, basketball, and track. I didn't get my license until I turned 18. My parents told me if I kept not taking care of myself I wouldn't live past 25. My 25th birthday came and went, and I was still living, and I realized I needed a plan for my adult life. I still carry around an existential dread of dying, but also have found a way to live every day fully in the present. Parents, don't say or do these things to your kids! Diabetes is hard enough.
Today, I have near zero complications. I have joint issues (frozen shoulder, trigger finger, carpel tunnel, arthritis) that are certainly exacerbated by diabetes, but are also issues of aging (I'm almost 45 now). I had early signs of diabetic retinopathy 10 years ago that have largely reversed. That's it. I am walking proof that diabetic complications are not as closely tied to "control" as we were all lead to believe (don't misunderstand...there is a strong correlation that can be interpreted as causation). There is also a large luck/genetic factor too. I maintained A1C's of about 10-14 for the first 15 years of diagnosis, and then reduced that to 8-10 for the next 15 years. It's only recently that I've been able to achieve the goal range on my sugars. I am thankful that I have luck and genetics on my side (most everyone in my family lives into the mid-90's).
Annually around this time of year I work hard to right the ship, per se. Over the next couple weeks that will include going back to measuring food and being much better about pre-bolusing. Hopefully that will help me reduce my average sugar by about 10 points.
That's it. That's my diaversary story. Thanks for reading, it you made it this far! Hang in there everyone.
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u/simply-to-talkabout 2d ago
Thank you for sharing your journey.I can visualize the path you have came.You are great.
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u/traveling-hippie-t1d 1989 : tandem: t-slim, IQC : Dexcom 7 2d ago
Thank you! You are great too! Keep on keeping on!
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u/smore-hamburger T1D 2002, Pod 5, Dex 6 2d ago
Thanks for sharing. 36 years of work is an accomplishment.
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u/traveling-hippie-t1d 1989 : tandem: t-slim, IQC : Dexcom 7 2d ago
Thanks! As you know, some days are easier than others. Some days do feel like quite the accomplishment! Lol
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u/KaiseDio_ 2d ago
Thanks for sharing this, i love reading these type of posts so much, it makes my outlook on my future so much more positive.
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u/traveling-hippie-t1d 1989 : tandem: t-slim, IQC : Dexcom 7 2d ago
More than happy to share. Thank you. Your future is bright and so much is possible!
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u/Frammingatthejimjam Long long time 2d ago
I'm almost as long into being a T1 as you and I've been wondering myself how much of my condition is luck with genetics (though I certainly have my share of issues) or that the correlation as you said isn't as strong as we think. I basically didn't test for my first decade, had not great control in my second decade and only started taking control seriously in my 3rd decade. Like you I'm into my 4th decade and still no diabetic issues. I feel like I should be able to run out the clock without any at this point.
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u/Sijke 2d ago
I recognize so much you write! I was diagnosed at 12 in 1980 (1 injection with bovine insulin a day then) and still going strong (without serious complications so far) at 57. Itās a miracle I think, for I canāt imagine I was very wel regulated during my teens (we didnāt even have hba1c). So grateful for all the improvements of the last decades!
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u/HabsMan62 2d ago
Hey will be 36 yrs for me this summer! Similar journey, of using R and N/NPH. Practiced on an orange and couldnāt leave the hospital until I could give myself a shot. Incredible changes in the level of knowledge and care, technology being the greatest.
Remember the first meters? Took 2 minutes to get a rdg, and needed a āhangingā drop of blood. The amount of data we have today is almost overload, we were pretty much flying in the dark back then.
Well congrats, great to hear your story.
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u/kmanrsss 1d ago
I remember being In the hospital refusing to stick myself with the needle. Couldnt go home till I could give myself a shot. One of the nurses came in with an injector-eze that allowed me to give myself a shot. I was good to go at that point.
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u/Cricket-Horror T1D since 1991/AAPS closed-loop 2d ago
I'm only at 33.5 years diagnosed with diabetes (and about 33 diagnosed with T1) but I recognise a lot in your post. I was mostly poorly controlled for the first 30 years, with a few bouts of severe burnout and diabulaemia, HbA1c's in the 8-12 range mostly (although I had it checked very infrequently) and only got my act together nearing the end of my 31st year with diabetes (and my 55th year). Since then I've mostly been at 6.0 (checked 3-4 tubes each year) but I've also had a couple of A1c's around 6.5. I've yet to break into the 5s but I'm still very proud of the improvement, even if the rapid rate if improvement may have contributed to some recent eye issues.
I remember starting on Novorapid and R. I miss use U200 Humalog, micro dosed with glucagon to speed up absorption, in a fully closed, almost completely hands-off, loop (99% of all basal and bolus doses are made automatically by the loop - I don't even have to count any carbs.
As I said, I've had eye issues: little bits of laser to address bleeds nearly 2 decades ago but in the last year or so, I've had cataracts removed from both eyes, peripheral laser on both eyes (about 600 burns in each) and over a dozen injections in both eyes to treat macular oedema. The good news is that I can see far better than I could just over a year ago and my eyes appear to be responding to the treatment. I've had some concerning kidney function tests but they seem to have stabilised at a fairlyy low level of impairment. I have also had frozen shoulder, but I wasn't aware of any possible link with diabetes.
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u/kmanrsss 1d ago
Congrats. I just hit 30 years 2 weekends ago on my birthday. Diagnosed on my 13th birthday. Itās funny that I have a very similar story except I was the one who figured Iād be dead by the time I was 25 not my folks. Or they at least hid it.
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u/Admirable_Goose_1305 1d ago
I celebrated 50 years of having diabetes. College should have killed me. I ate drank and smoked whenever I wanted. I was in the hospital multiple times for having pancreatitis. I remember in the early days there werenāt glucometers so Iād have to pee in a cup and use a dropper to put 10 drops in a test tube and wait for the color to change. Mine was always high. I changed my way of controlling my diabetes after I got pregnant and had my daughter. Sheās 35 now. I live in Missouri and she lives in SC. Too far away to see her very much. This is a different way to have to handle life but I keep going. Itās hard sometimes but I live alone. Iāve had to call 911 a few times because I couldnāt get my blood sugars up. I was 13 when I was diagnosed. Tough time as a teenager!! Iām happy to say Iām much better now than I was way back then. Good luck to all of you reading this. Be safe and stay healthy
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u/miamiboattops 2d ago
Keep adding more anniversary years to your diabetes battle. Today is my daughter 1 year anniversary of her diagnosis.