Type One for 30 Plus Years-Where did everyone go?

I thought it was fun to share long time or old time diabetes experiences with a group of like minded people. We used to have a group when the website was in the old format. Sounds like the web technology has changed and it went away. Not complaining though, I’m very grateful that Emily and Manny and team have dedicated time and resources to create a meeting place for a community of people that I can relate to. I hope they feel that their efforts are appreciated :wink:

Here’s my story in a nutshell, in 1976 a little while after my little brother was born, I got sick. I was 5.5 years old. I have lots of pleasant memories that I’d be happy to share with anyone that wants to hear them. Before the dx, I remember trying to sneak past my parents in the living room to get to the bathroom. I had to sneak, because I was supposed to be in bed sleeping, but instead, I had to get up and keep peeing. I was able to appreciate moving from the chemistry set urine test in a tube with foaming pills that changed the urine colors, to urine test strips, to huge blood testers, to smaller and smaller testers, then to a continuous glucose monitor. While I appreciate the improvement, I feel like we can and should do much much better. The technology on my Medtronic 5g or whatever its called feels sooo terribly archaic next to the smartphone apps and devices that we use in every other technology.
I’ve had some complications lately that have really been bumming me out. Been taking time every few weeks to get lazer treatment in the eyes. I don’t like it at all, but I’m glad to be able to see.

What’s your story? Please share with me if you want. Maybe I’m in the wrong place or category, but I love to hear the stories of how people have lived their lives with their challenges successfully (or not) for a long time.

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Me too–I joined that group not too long before the change to the new platform and it disappeared. Coming up on 32 years since DX this fall.

I missed the pee-on-a-strip era by a couple of years; when I joined the club it was still bleed-on-a-Chemstrip-then-compare-colors-to-the-bottle though. Some of us were talking about how you could make 'em last longer by cutting them in half the long way. @phoenixbound claims he cut 'em in thirds–a keen eye, a steady hand with the scissors and a thrifty nature, that one.

Amen, amen, ay-MEN brother Yancey–can I get a WITNESS! Mine is like using a pager to control my BG. I was on Asante Snap for about 3 months this spring before they vanished in a poof of email and a loud popping sound, and that felt a lot closer to the current state of the digital ecosystem, though it still had its drawbacks. Ah well. On the positive side, I’m looking forward to getting my Dexcom 5 in a month. Full iPhone integration, yippee! And hopefully Android before too long as well, though god knows, maybe Google will come out with the contact lens BG monitor before then…

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Christmas eve, 1983, I was driving home from a party on an icy freeway, and my care was rear-ended…crashed head-on into the freeway wall, rebounded back into traffic and was hit on the passenger’s side. That was back in the day before airbags, and I didn’t wear a seatbelt–then. Legally dead for just under a minute and developed type 1 diabetes within days.

So, 32 years–33 in December.

Diabetic coma in 1986. The one injection the endo had me on didn’t quite cut the mustard for what I was told after I survived the coma is a very brittle condition. What can I say? I’m sensitive :wink:

Went on four injections and just did the best I could. Gave up sugar and alcohol…but still brittle.

Almost died in 2014 due to untreated hashimoto’s thyroiditis, adrenal exhaustion, and third stage kidney failure… but I managed to pull myself back from the brink, and–with the discovery of the CGM this past May–am finding my way back to vitality :smiley:

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Some good stories there, I am 38 years old and was diagnosed with T1 about 2 years ago after losing lots of weight and being thirsty all the time…Have had no complications or hospital visits thus far…however after reading everybody’s stories on this site I am starting to freak the fark out!!
When will my eyes start to deteriorate, will my toes fall off, when will my Hypo systems disappear all together and I will just pass out…are these legitimate concerns or am I being dramatic?

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[quote]Before the dx, I remember trying to sneak past my parents in the living
room to get to the bathroom. I had to sneak, because I was supposed to
be in bed sleeping, but instead, I had to get up and keep peeing.[/quote]

I’ve only had diabetes for 24 years, but I was diagnosed at age 9 and remember this SO well. Sneaking through a darkened hallway past my parents’ bedroom so I wouldn’t wake them. Going to the bathroom and then washing my hands and letting the tap run as I cupped my hands underneath and caught water to drink, or else stretched as tall as I could on my tiptoes to crane my neck around and try to drink directly from the tap. Turn the water off when I thought it was running long enough to wake my parents, and then tiptoe back to bed, only to wake up an hour later to repeat the process. So, so thirsty.

[quote]When will my eyes start to deteriorate, will my toes fall off, when will
my Hypo systems disappear all together and I will just pass
out…are these legitimate concerns or am I being dramatic?[/quote]

Control your blood sugar as well as you can, and you may never develop these complications. Or maybe you will, since there are no guarantees in life. But people diagnosed with diabetes in this age of insulin analogues, pumps, CGMs, and data analyzed in the cloud are practically living with a different (and much more manageable) disease than those diagnosed 20, 30, 40 or more years ago.

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I love talking about the tech. … and mostly complaining. I feel like I could do a better job, however the reality is talk is cheap and good productive solutions are difficult. I’m grateful to those inventors and engineers grinding through day after day and push the idea through to completion so I can benefit.

Now, medtronic, could you please make it easier for me to respond to the nagging alarms and alerts in the middle of the night when I’m half asleep. Thank you.

I’m so happy to hear the CGM has helped to make progress. Occasionally I go without mine and realize how much I actually rely on the darn thing day to day. Thanks for sharing your story. You are a survivor! Keep up the good work and be proud of yourself and your fight!

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I’m not sure how the newer format of this site works yet, the little dialog above says I should try to reply to all somehow rather than in depth on one, but maybe someone can teach me the best way.

Anyway, Shoehorn, You should worry only enough so that it encourages you to take the absolute best care of yourself that you can. The reality is, if you run your body at 400 mg/dl day in and day out you will die. If you run your bg levels between 80-120 you will live as you would normally without diabetes, and if you run at around 200 on average you will get some complications after having for a while. There is research to support that, and I’m over simplifying that, but that’s the basic idea. As you know, the key long term indicator of those average bg levels is the hba1c test.

I’ve had doctors that told me different things over the years to encourage me to take the best control of myself that I could. I need to do better… but its really hard. Hard to find the self discipline to do it. Hard to count the carbs and know how big a bolus to take. Its hard to run yourself so tight, that you get low blood sugars all the time. I’ve had some complications, but I fully intend to live out my days in spite of the complications and treat them as an inconvenience that I’ve found along the road of life. Let me know how its going.

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I am 47 and have been type 1 for 43 years. I can relate to the urine tests with pills, the huge glucometers and the new insulin pumps.
I think the best thing my parents ever did was send me to diabetic camp at the age of 9. Until then I knew of no other diabetics; it was great to know I was not alone. I learned so much at camp over 7 years. I made many diabetic friends whom I am still in contact with. I love to hear their stories… one such friend just had a double kidney and pancreas transplant and is no longer diabetic :smile:

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Type 1 for 34 years this year. Hoping to receive the Joslin 50 year medal one day!!

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I was diagnosed in 1988 at the age of nine. If you are interested in my story you can read my blog post I Am Living Proof, or my entire blog, Diabetes Odyssey. :smile:

It’s been a long, hard, rebellious, neglectful road for me that has left me with many (you might say ALL) complications. But I have come around, matured, and am doing very well now. :smile:

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Well, it’s legitimate to be concerned, sure, but I’ve had it for coming up on 32 years and no complications yet, in spite of enduring decades on treatment regimens that were primitive compared to what we have now. You’ll get a somewhat skewed impression here because people tend to focus on problems they’re having and need help with. One of the advantages of being dx’d as an adult (I was in my 20s) is that you aren’t subject to the storms of adolescent rebellion, fear of being “different” etc that plague kids with the disease, and so should be better equipped emotionally to deal with keeping it controlled from the beginning.

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i have had D for just over 30 years. i remember the urine sticks and the giant glucometers that took i don’t remember how long before they spit out a BG #. i was on R, NPH, as well as Lente. i used to, at one point, have to take 10 shots a day. (i still don’t really know why). i was using that idiotic sliding carb scale from which you took your BG, then decided how many carbs you were going to eat, and bolus for either 15, 30, 60, 90 gms of carbs per meal or snack. i was passing out all the time. i couldn’t keep the timing of my insulins together w/ my meals. everything was all over the place. i remember cutting out carbs almost completely and just going for protein (which at that time i never bloused for, as i believe it was unheard of). my endo (at the time) was very strict about carbs; i was young and listened to his instructions as if he were some sort of god. he told me that if i didn’t include carbs (white ones included) that i would become “allergic” to them and would not be able to get “back on track” for when i did decide to have some carbs w/ my meal.

today, and for the past maybe 28 years, i have a new and fabulous endo in NYC. i cannot recommend him enough. i am a grateful pumper and cgm-er now, and my endo is always open to new suggestions based upon the info i bring to every visit. i keep unbelievable food logs, mood logs, sleep logs, anxiety logs….you get the idea. i am struck w/ OCD, so my tendency is one of anxiety over keeping my BGs level. of course this is impossible, i know, but i do it anyway. i don’t think that this is a terribly bad thing. and so it goes….

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If you take good care of yourself by keeping bg levels stable and maintain a healthy lifestyle via diet and exercise… then, no worries.

If you don’t pay attention, then these complications are inevitable. 30 years is what the statistical mean is, but it’s different for everyone.

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As a TuD oldtimer, but Toddler Diabetic of only 8 years—T2 and not on meds–Yet—I am chiming in here to say—I need these stories. I love people’s stories. I hope I will be a D Oldtimer someday, so I learn from every single one of you.

And the very first week I found TuD in 2007 or 2008, desperate and depressed, it was Manny and Doris D and many T1s and LADAs, etc who welcomed me…

In terms of your post title–@Robert Yancey----Thank you for finding your way back. I need to hear you–and all these lovely human beings who are responding…Blessings on us all and I don’t care about the arbitrary categories…The D is The D…we all need to figure it out…sort of…as best we can…for as long as we can…Hehe—Diabolical Whimsy is what I call it…Blessings…

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In 1945 I had mumps and chickenpox, at five years of age. While recovering from those diseases I had all the classic symptoms of T1D. My parents took me to four doctors before they found one who was able to recognize and diagnose my diabetes. I was diagnosed a few days after my sixth birthday. I was wasting away, skin and bones, and had a hard time walking. Animal insulin, one shot per day with a glass syringe, brought me back to life. I was told not to eat sugar, but there was no other advice. I ate everything I wanted, and as much as I wanted, but totally avoided sugar. There were no diabetes complications for 50 years.

After changing to modern day insulins I had some minor complications, but nothing major. In 2007 I had some retinopathy and neuropathy. Then I started pumping in June of that year. My A1cs were in the high 5’s before pumping, but I had too many highs and lows that averaged out to a good A1c. Pumping greatly decreased the number of highs and lows, and my control was much more stable. My retinopathy disappeared, and has not returned. My neuropathy improved, and rarely bothers me now.

After 70 years of type 1, I have good diabetes health, with no serious diabetes complications. I am married for 51 years, have two children, and two grand kids. I am the only type 1 person on my family tree.

My only problem now is not being able to feel some of my lows. If Medicare would cover a CGM I would probably have no problem with lows.

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It was 1964 when I learned that I had T1D. I was 16 years old then and thought I could never ever give myself a shot. How in the world was I going to stick a needle in my thigh?! OMG, I was petrified! After the diagnosis I was put in the hospital where student nurses were assigned to teach me everything I needed to know about T1D. And they did. They really, really did! Even giving me an orange to stick with a syringe so I could get used to the feeling of it. They were young and I related to that more so than I did to my doctor or the senior nurses. (It was a teaching hospital in Baltimore that also had a nursing school affiliated with it right on the premises). Here’s a rundown of what it was like then:
Exchange Diets
Metal Needles
Glass Syringes
Sterilization of both in boiling water
Urine testing for sugar in a test tube
Or strips that you peed on (they turned varying colors of green, as I recollect)
Insulins of Beef and Pork Origin
One shot a day of a long-acting Insulin (Lente for me)
Regular Insulin given only if directed by your doctor
Disposable Needles and Syringes came about in the later '60s but were expensive and we could not afford them.

There were no home BG tests in 1964. They didn’t exist until the mid- to late- 70’s or so. They were big and bulky contraptions but, oh, what a wondrous thing they were, even though they were terribly imprecise: Little white pads on which you placed a very large drop of blood; wait for a period of time, then wipe or rinse the blood away and then immediately compare the color on the pad to the colors on a chart to get a range of numbers. But, wow, what an invention! It revolutionized the way in which Diabetics could take better care of themselves. As the years went by, BG meters got smaller and smaller and there were less steps involved and the number your got was more precise, not a range. And now there are pumps and CGM’s and artificial Pancreases are in the offing. I’m 68 now and don’t know if I’ll be able to take part in many more advancements, but what I’ve seen so far has been unbelievable. I still hate that I have to be a T1D and wish I didn’t have to watch and account for every morsel of food I put in my mouth, but because I am a T1D I have been truly humbled by what I’ve seen thus far. When I got my first Insulin pump, I cried at what an amazing little machine it was, with a Bolus Wizard no less! Anyway, I hope things continue to improve for Diabetics and that instead of an artificial Pancreas, there will be a cure and Insulin pumps, CGM’s, BG meters, etc. will be a thing of the past.

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A few months back someone–@Richard157 maybe?—posted a link to a fascinating article about the history of BG testers. IIRC, there was some kind of overlap between the development of the bulky machines and the simpler Chemstrips which quite a few of us started out with, though without tracking the article down again I’m hazy on the details. I was dx’d in 1983 and used Chemstrips until the late-80s/early-90s.

It’s funny how what you started out with colors your reactions to what comes along later. I don’t particularly remember my first electronic glucometer; I guess the switch from Chemstrips just wasn’t that big a deal to me. I can imagine feeling very differently if I’d had to deal with urine drops in a test-tube. I’ve probably said this too often but the real earth-shaker for me was lantus-novolog MDI, which struck off the bonds of R/NPH I’d been shackled to for 20 years, compared to which going on a pump 2 years ago feels like more of an incremental improvement. My particular history makes it hard to get my head around the fact that R/NPH itself was a big step forward when my own feelings toward it are a deep revulsion bordering on loathing.

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Wasn’t Diabetic Camp the Best!!

“I think the best thing my parents ever did was send me to diabetic camp at the age of 9. Until then I knew of no other diabetics; it was great to know I was not alone. I learned so much at camp over 7 years. I made many diabetic friends whom I am still in contact with.” (I don’t know how to copy and paste a screenshot, someone please tell me blush :blush:

I went when I was 7-9 in Southern California. I know my mom was sooooo nervous and scared to send me away. I learned so much from them about diabetic life. One thing I remember was the shot lines. They were so long. BUT, if we wanted to learn how to give our own shots we could go do it, and skip the line entirely. I used to lean up against the pole on the porch and give it to myself in the back of my arm.

It was such a huge motivator to go and get to skip the shot line and eat sooner. Mom’s with T1D kids. Send them

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T1 for 55 years. I recently joined a T1 support group, and every one except me is one the pump. The transformation of care between then (55 yrs ago) and now is so dramatic that now I’m happy to simply use Lantus and Humalog. The only advantage I can see to the pump is that I wouldn’t have to give so many injections via pen (taking 4 or so a day). Everything else - testing - carb counting is the same. I’d rather do take injections than have this thing on/in my body all the time.
Am I missing something?

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