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Cure and Hope Are Four-Letter Words March 7, 2013

Posted by laosita in diabetes.
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This week has been one of posts about cures, hope, disappointment and encouragement because of an announcement made pertaining to a ‘cure’. The posts have been superb, and I’m so proud to be in this community right now. Check out links in this post, or my blogroll, for some phenomenal DOC reads and thoughts.

Hope. Cure. Technically, these are four-letter words. I use the less appropriate four-letter words more often. In the almost 25 years I’ve lived with diabetes, not once did I think I would be cured and never will I believe a cure is in my future.

While I don’t remember anyone telling me specifically ‘They’re working on a cure, hang tight 5 to 10 years’, I do recall countless reports of ‘cures’ in the next 5 to 10 years. As so many DOC members have shared, they would be cured twice or three times if that were true.

I do not believe in a cure in my lifetime. And I do not hope for it. Say a cure is discovered tomorrow. Great. That does not mean shit for me. Not every diabetic will be cured the day after FDA approval. FDA approved does not equate to accessibility. My control, as compared to ADA guidelines, is solid. Therefore insurance might tell me I don’t ‘need’ the cure. People with ‘out of range’ A1Cs or high risk of complications would top this cure list.

No eligibility restrictions? Cool. My health insurance rocks, so I might be in. But a cure comes with its own set of restrictions. A whole new way to care of my body, to care for whatever extra precautions I might need to take. Transplants come with a slew of issues the patient must be aware of and manage. I am not sure I would be willing to change my day-to-day responsibilities – that I’ve managed for two decades – for something brand new.

And what about folks without awesome health insurance? What percentage of PWDs would love a CGM or a pump, and CANNOT GET ONE because of cost or insurance issues? Kiddos in poorer nations cannot get daily insulin injections. In those countries, diabetes is still a death sentence. That.Is.Bullshit. The people who need a cure the most won’t be the ones to get it.

Hope for a cure is too uncomfortable, too foolish, too selfish for me*.

However. Hope for technology advancements, for improved education and for prevention – I am onboard with that. That is why I participate in the community. That is why I support JDRF, ADA, the DOC, mentors, educators, endos, scientists and studies.  And to me, that is as important as the cure is for a parent with a newly diagnosed kid.

But a cure is not something to count on. It is not something to teach your kid or your peers to count on. The goal of any diabetic is to survive and to live life. That is anybody’s goal. Yeah, your pancreas screwed you over. Use that to make you a better person. Is it easy? Never. Fun? There are upsides, but no not really. But You Can Do This. Having diabetes makes you smarter about your choices. Makes you responsible. Makes you grateful. Would I ever wish diabetes on anyone? Hell No. But for those of us with whacked-out pancreases, don’t let hope for a cure distract you from your achievements. We have enough distractions.

*Note: I respect those of you hopeful for a cure. It’s just not me. Truly, you make a difference. Truly, you contribute to a worthy and admirable cause.

Hope and Dreams: Where Are They? June 13, 2012

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We were all dressed up. We made a special trip to her hair stylist just that morning. My dress had pockets. Family, extended family, family friends attended. It was….fifth-grade graduation! To bystanders, this might not seem like the event that it was made out to be, but to anyone involved, it was important (I also decided I might coincidentally be out of town during college graduation). Teachers and administrators presented the hopes for their students, and each student shared their memories and dreams. If dreams come true, we had many professional athletes, military members, and veterinarians in our midst. A future librarian, hair-stylist, engineer, and the president of the United States sat a few rows away. At fifth-grade, you have all the time in the world to accomplish these lofty goals. You really can be anything you dream of being.

I don’t remember wanting to be anything. I don’t remember having lofty goals and dreams. Not as a kid, not as a fifth-grader, not even in highschool. Did one too many lows erase the memory, am I just overly-reality focused, or did diabetes somehow take away my desire or ability to dream?

Unlike many who were diagnosed at my age and around my diagnosis year (1987), I personally was never told that I would be dead by 25. My mother, my nurse, and endo made sure that I knew that there was nothing I could not do. Like any other kid, the sky was the limit. (It wasn’t until college graduation that I discovered health-insurance coverage is the sky). With diabetes I live one number at a time, one trend at a time, one day at a time, one new technology at a time. Did I just run out of time in each day to start dreaming? Knowing that you can do anything you want is one thing. Dreaming is another. I can think of very few things that I’ve let diabetes get in the way of, yet I feel like I’ve lost the opportunity to dream of being something different. After a successful education, I have a strong career, traveled on my own to foreign countries, and survived being single more often than not- there is nothing that I cannot at least try to do. If I can do this, you can do this. We can do this.

But dreaming, dreaming of a career without health-insurance considerations, of living far away from my endo, of an unburdened relationship, of a cure? Dreams don’t get even a minute of my day. Where are your dreams at?