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I have not only survived, I have thrived!

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For those of you who worry about dealing with Type 1 or 2 diabetes, and the long term complications that can occur, I would like to let you know that yes, you can have a wonderful life and enjoy yourself.   The most important thing I learned, in 1969, was that I have to be my own best doctor.
posted Mar 28 in Conversation by blueyedblanche (470 points)

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8 replies

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What a wonderful, positive and empowering message.  Thank you for sharing with us!
answered Mar 28 by KarenG (14,230 points)
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Agreed! I was diagnosed at almost 30, April 29, 1999. I still remember that day vividly. Such a shock but suspected something was very, very wrong. I experienced a 2 year honeymoon phase where it seemed like the diagnosis was no big deal, just a push to live a healthier life. It is most certainly a rollercoaster (sometimes gentle, month-long cruises, and sometimes steep climbs and frightening descents). Amazingly, I was healthier pregnant, than not. A1C was 5.1 while pregnant. As I age, however, and life circumstances change with jobs, stepchildren, home, etc. it does become a struggle. Knock on wood and praise God, no serious complications. Most definitely, you have to take charge and decide for yourself what kind of life you want.
answered Apr 5 by eklacoste (640 points)
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Hi Blanche, my diabetic sister.  I too was diagnosed in 1969, at the age of 14.  Amazing to look back and realize how lucky we've been to still be here with how little tech was available back then!  I am blessed to have been placed with a diabetic alert dog for hypoglycemic unawareness.  Not the most high tech advancement but oh, so wonderful.

Take care - and keep up the good work!
answered Apr 5 by Peggy (180 points)
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I've had Type 1 diabetes since 1979, and I have also lived a fine life.  The main thing I'd suggest to people is to remember that diabetes self-care is about making lots and lots of decisions.  I once calculated that I'd made over 100,000 decisions that were directly affected by having diabetes, including, "Is it safe for me to drive?" "Should I eat that?"  "What exercise should I get?" "How much insulin do I need for this meal?"  

Why is that relevant?  I used to get very self-critical when I'd get very high or very low.  But when I started thinking about how many decisions I'd made well in what is a very complex balancing act, I was able to let the goofs go by with less guilt and self-blame.  

That said, I take particular care on the safe-to-drive decision, having had a few instances early on where I got low behind the wheel.  I would find it very hard to forgive myself if I injured anyone else.
answered Apr 5 by brittonk (540 points)
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Thanks Blanche; you are absolutely right that you must learn to be your own best doctor.  You won't know everything, but you learn what is best for you.  I was diagnosed with type 1 in 1953, at 6 years of age. The prognosis was pretty grim back then, but my parents encouraged me to live as normal a life as possible, and that "I can do it" has stuck with me. With all the advances in diabetes treatments, I can truthfully tell new diabetics this is a manageable disease.

Peggy, I also suffer from hypoglycemic unawareness (very scary while you're sleeping) but have found that using a CGM makes a big difference for me.  Not cheap, but less expensive than training and keeping a dog, especially since Medicare has announced this year it will begin paying for CGMs.
answered Apr 5 by Mary1953 (330 points)
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Thank you for your feedback - it's all very interesting & valuable knowledge.

Like some of you, I was young when I was diagnosed at 15 1/2, in 1969.  My first internist was fantastic, and gave me loads of reading material, so I could learn as much as possible.  I moved away for about 9 years, and had doctors who weren't really able to help me with my diabetes (one was a pediatrician who said, "You have to eat something sweet in the morning, like a pastry (!!)", whom I met regularly in the E.R.. I moved back to my home town and better care. When my original doctor retired, I wound up with an endo. who only repeated, "Diabetes is a chronic, metabolic condition, and you CANNOT skip a meal!".  Never learned anything new from that doctor. That became tiresome after a while, and I found another endo. who was brilliant, who continued to keep me up to par on the latest & the greatest research and treatments.  I never stopped subscribing to Diabetes Forecast, ever.

What I did in the meantime, was eat healthy foods, exercise whenever possible, found that I had to have a stand-up job, where I could work the same hours, every day, and keep a fairly rigid routine, sleep-wise.  Urine tests, test strips, and finally a blood glucose meter enabled me to move in the right direction, but, it wasn't until I went on the pump that my diabetes control dramatically improved.  I test my blood 9-10 times, daily.

I managed to thrive, despite the ups and downs, because I had vowed that I would never go blind, lose a limb, or become a statistic, due to diabetes.  Before I went on the pump, I was taking 5 shots per day, to try to maintain some kind of "control" of my diabetes.  I had graphs which showed my numbers see-sawing, up & down, between 30 and 300, most weeks.  I had the dawn phenomena, and rebounded regularly with mid-morning shaky lows.  My first complication was gum disease, so I learned how to be a maniac about my teeth.  I had numerous hand surgeries (carpal tunnel, Dupuytren's contracture, trigger fingers) due to neurological problems, and eventually was diagnosed with Sarcoidosis.  Now that could kill me, if it migrates to my heart or lungs.  My hands were fairly ruined by the time I'd had 9 or 10 hand surgeries.  I was advised to apply for SSDI, and was fortunately accepted.  36 years on the job helped tremendously.

Since I retired from the working arena, I've kept busy with daily walks, bi-weekly hikes in the hills (2-3 1/2 miles), and moving, moving, moving.  I try not to sit too long, and seldom watch tv or a movie.  I continue to eat at pretty much the same time, every day, despite having flexibility with the pump, exercise, especially after dinner, and sleep for the same amount, every night.

This is a pretty round-about way of describing how I've thrived with Type 1 diabetes for the past 48 years.  We have to be our own best doctor, listen to our bodies, pester advise nurses when needed, and treat ourselves nicely.

I have to go run up and down some stairs, now.
answered Apr 5 by blueyedblanche (470 points)
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I definitely agree.  I was diagnosed in 1964 and I am a Joslin 50 Year Medalist recipient.  So far, no complications.  I attended the Joslin Medalist event in Boston on April 29th.  It was one of the highlights of my diabetes journey.  It was the first time I met someone like me who had lived for over 50 years with T1D.  However, the highlight of the event was the awarding of an 80 Year Medal to a woman who was diagnosed at age 8!  This lady was a dynamo, well spoken, well travelled and looking forward to the future.  She gave me hope!
answered May 11 by linnier (160 points)
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Thank you for sharing your "prescription" for living well with T1!  It's a little different for everyone, I think.  I too was diagnosed in 1969, at the age of 8, and have made it this far without (knock on wood!) any significant complications - although I am plagued with hand problems also.  (Sounds like we may truly be diabetes sisters!)  My next goal is to receive a 50-year Joslin medal, and I hope to meet you there!
answered May 12 by bayleafbroker (1,430 points)
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