Today, August 8, 2006, marks the 29th anniversary of the day I was diagnosed with type 1 diabetes.
I've always kept August 8 in the back of my mind, but unlike a lot of people, I don't see today as a day to mark with "29 things about me" or "29 facts on living with diabetes."
I think of myself as a survivor, someone with (relatively) good genes, and a tough cookie to have made it this far with (relatively) minimal complications. I've become wise to the vagaries of health insurance, the concept that good health is a blessing and not a given, and that said good health can change in an instant. But I'm still happy most of the time and I'm proud of being a survivor.
I'm also a militant carb counter, an avid pump user, and a chronic blood sugar tester. I am upfront with doctors, ask a million questions, and always want to know the big health picture (Will the infertility drugs affect my blood sugars? Can I keep my pump on during surgeries? What do I need to do to get the doctor to call me back with those results TODAY?). From what I read about in the media, I am considered one of the diabetic elite: someone with the motivation, knowledge, health insurance, and frankly, money, to be able to buy and follow the best care available for people with type 1. And I am rewarded with optimal blood sugars and A1c levels.
Yet because I've learned to live this way, I've also learned to live without the yearning that I see many newly-diagnosed type 1s and the parents of type 1 kids seem to have about The Cure. Raising money for the cure, counting the days 'til there's a cure, hoping and praying for the cure, and cursing President Bush because of his misguided stem cell beliefs as a hindrance to the cure. (I do curse him for not funding stem-cell research, but honestly, I think the realities of what stem cells can do for diabetics and others are a long time away).
Maybe I'll be proven wrong, Wrong, WRONG, but I don't honestly think I'll be cured of this disease in my lifetime. I also want to live to see age 100, so that's a good 60-plus more years of living with diabetes. Undoubtedly, diabetes management has changed a lot in 29 years (no more daily urine testing, I rock the insulin pump instead of a single daily regular-and-NPH shot, and carb counting has expanded both my waistline and my palate while keeping my blood sugars in check) for the better, but for whatever reason, I just don't have it in me to think there will be good technology to get my pancreas working 100 percent again, without taking dangerous anti-rejection drugs that come along with organ transplants.
So here's to (in my mind) at least another 29 years of tight blood sugar control, minimal complications, and life with type 1. More years of asking for and receiving what I need from my health care providers, and more years of managing my condition with the best tools I have and the most knowledge I've got.
Anything more would be an unbelievable bonus.
10 comments:
thank you for your "realistic" viewpoint. Much of what you said is how my husband feels about "the cure".
One thing we think about is, okay, so maybe there will be a cure in 5, 10, 25 years. But what about the damage that may have already been done to his body before the cure comes along... (Granted, he has hyperlipidemia rampant in his mother's family that may play a part in any future heart disease, so we'll never know how much of an impact the type 1 on that.)
But like you said, the improvements in care are GREAT and if there is no cure, that is the next best thing. (and if everyone could get the same treatment and education...)
Lyrehca
Congratulations on reaching this milestone. I think only someone with diabetes will truly understand what an awesome job you've done.
I wish you many more years of good control, enough that you'll really enjoy it when the cure finally comes!
Bernard
A great viewpoint. I continue to believe in "the promise", but this is not the promise of a cure. It is the promise that we have available to us the courage and wisdom to press on each day, using the valuable tools now available and trusting that more will come.
The progress of treatment methods is undeniable - do you think I want to go back to peeing in a cup, matching ridiculous shades of green that gave little information?
Ha! You know the answer.
Livint well with diabetes for 29 years is an accomplishmen that deserves a big round of applause.
All my best. MN
Congratulations on 29 years of good health!! That is such a phenomenal accomplishment.
There may not be a cure in your lifetime, or there may be...who knows. But it won't stop me or anyone else from raising money toward it so that others in the future can be cured.
Congratulations. Way to go.
As a fellow type 1-er, with 25 years under my belt, I thank you for taking the words right out of my mouth about the elusive “Cure.” People seem horrified when I say that I don’t think there will be one in my lifetime and if there is, no way would I be the first one to try it. They seem to think that means I am a pessimist. I think it means that my life, however complicated it may be with diabetes, is pretty darn great, and I’ll choose to “live for today” rather than count on the gold at the end of the rainbow.
Here is to living well with diabetes, because it’s the only life we know.
I toast my diet coke to you!
Caren
Here's to you, Lyrecha.
I don't think I can say it any more eloquently than Caren did, so I'll echo her sentiments. With this September 11th marking my twentieth year with diabetes, I agree with your sentiments completely. And as far as not seeing a cure in our lifetimes, well, here's hoping we're proven wrong wrong WRONG. :)
Indeed. Prove us wrong. We want you to. This was a wonderfully written post. I hope all stays well for you - and that you get an unbelievable blessing in the very near future.
Well said... and Congratulations!
You know what's funny... I've been saying "I don't expect a cure in my lifetime" since I was 16, with only a few years of diabetes under my belt. I'm certainly not a pessimist, but focusing on living your life the way it IS instead of how it COULD be is critical to diabetes, and life success.
Thank you for describing so eloquently what many of us feel!
Thank you for sharing this with us. You have done, and continue to do a great job.
I feel pretty much the same way about "the cure" - something that has always been promised, but never delivered. I too hope we're wrong, but I'm realistic about it.
I am happy though that there are people working on it, and not just settling on insulin as the magic fix all solution. There is a big difference between treating a condition and curing that condition.
I do still hope though. I also recognize that the other things I struggle with (eating problems, general fitness, etc.) would still be a struggle for me with or without the diabetes. Maybe I'm thankful for being better educated about those things due to learning about my diabetes. Who knows.
29 years is a long time to successfully manage diabetes, and I give you a lot of credit for that. I'm hoping that we all can continue down the road of good management.
I was also glad to see that you pointed out that having the money to deal with diabetes (and it's companions) is important too. It's damn expensive to take care of, and having to make choices about what to sacrifice to take good care of it is a shitty place to be.
The fact that we can make that decision, and do whatever it takes to care for ourselves, says a lot about our character.
All the best to you - and thank you again for sharing this with us.
Congratulations. Like you, I "celebrated" 30 years of living with type 1 diabetes on July 24. However, I did not consider it an event worthy of celebration, since I had hoped that I would be cured by now, but that will happen when it happens. Also like you, I have taken pretty good care of myself and suffered from no major complications. I am realistic about a cure, but I also feel that the burden of managing this condition has increased dramatically (especially since the DCCT) while the tools have not really kept pace with the demands.
For example, we STILL do not have continuous blood glucose monitoring widely available and I've found that carb counting is anything but a physiological replacement for fully functioning beta cells -- in fact, its a lousy replacement which is roughly 75% art and maybe only 25% science.
I am tired of being unable to attain perfect blood glucose control 24/7/365, and frankly, I blame inadequate tools. But I have used my irritation with the lack of progress as a motivation for pushing even harder for a cure, fundraising for JDRF and advocating for public policy which does not impede research progress (lets just say that the Bush Administration has been no friend to science).
My favorite quote is as follows:
"Insulin therapy, via daily injections or a pump, is a poor substitute for the body's exquisitely precise regulation of blood glucose by insulin-producing pancreatic beta cells."
Testimony Statement by Dr. Allen M. Spiegel, M.D. former Director National Institute of Diabetes and Digestive and Kidney Disease, National Institutes of Health, U.S. Department of Health and Human Services on Recent Devlopments in Research on Type 1 Diabetes before the Committee on Homeland Security and Government Affairs on June 21, 2005.
http://www.os.dhhs.gov/asl/testify/t050621.html
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