I had my diabetic eye exam yesterday.
Nearly 34 years of type 1 diabetes and the doctor said he couldn’t see any sign of diabetes. Not a thing. Whew… I’d been given news of another year (actually two years since my last visit) without a complication from diabetes.
I felt relieved, but it was mixed with what my friend Scott Strange calls Survivor’s Guilt. Why have I managed to avoid complications even though my blood sugars and A1C’s aren’t always great (who’s are)? Why do others with a long history of BG’s much better than mine struggle terribly with complications?
It doesn’t make sense other than to demonstrate that there are many things about diabetes that aren’t understood.
My doctor talked about this during my appointment. He described doing research at the University of Minnesota where they saw many of the same things that studies such as the DCCT later proved, but that there seemed to be something more as well. He said that some people with diabetes seem to have some sort of genetic protection against complications (up to a point) that even today, many years later, they haven’t been able to figure out.
He told the story of recruiting a stubborn old guy into a research study back in the late 1980’s. This guy was in his mid-seventies and had lived with type 1 diabetes for over fifty years. Not a sign of diabetes related eye complications to be found. So my doctor asked him what his secret was. The guy’s response? Stay away from doctors and have at least two beers each day! Haha!
The point of that story (I think) is that during that period of time and with an attitude like that, how likely was it for that guy to have had low A1C’s?
Exactly. There must be something more.
*There’s a sticker on top of that computer monitor that says (yes, in all caps) “COMPUTERS FOR VRS USE ONLY – THANK YOU” What – were people browsing FaceBook while waiting for the doctor to come in?
Hi: Come from a family of Type 1 diabetics (3 out of 6). I was diagnosed in 1948, in October I will celebrate my 65th anniversary. Two of my siblings died from diabetes complications, one in 1975, one in 2011 (was blind for 30 years). Wrote a book about what I have done to get and stay healthy and the 10 principles I follow that lead me to better health in spite of the diabetes challenges.
Please see my website for more information on 2/10/2014.
Hooray for the complication-free eye exam! It seems that since research is still far away from complete understanding of what exactly causes and/or triggers this disease then it is equally far from understanding how the disease progresses in different people. Research still has a ways to go to solving this puzzle. Sigh. I just do what I can and hope for the best.
YAY YOU!!! The whole “genetic protection” scares the hell out of me, because Im certainly not in that group based on my family history. GULP.
I’d say it’s a little of both.
But then, why did all of my relatives die within 20 years of diagnosis and I’m still here at 40?
Your optic nerve is HOT!
Scott, there are a lot of smart things I could try to say here, but the one thing I really want to say is how happy I am for you at this result. Keep it up brother.
My endo says the same thing, although he says the research seems to suggest that people who are more likely to avoid complications tend to have faster red blood cell turnover which means that their HbA1c’s might look better when the reality is that the red blood cells are replaced faster than in others. The simple fact of the matter is that until diabetes behaves in a “rational” manner, the medical profession is kind of fighting a losing battle because the disease doesn’t follow rules, then how can they expect patients to follow treatment protocols? I say the focus on management is a misplaced priority; the focus should be solving the root cause rather than treating the symptoms, but so far, the number of doctors who work in the field outnumbers those who work in fields like immunology. Maybe someday …
If you know what you are doing and work hard at diabetes management, you increase your chances of a good outcome. There are no guarentees. You also decrease the chances of “if only…” thoughts if there are complications down the road.
-Lloyd
They say that some T1s still grow beta cells, but that the immune system wipes them out just as soon as they squeeze out that first droplet of insulin. I suspect that has something to do with it. My untested, unproven theory is that this why I’ve never been in DKA and never seen a blood sugar in the 500s or higher. There’s a little something inside of my messed-up endocrine system that’s working on my side….
But I know the “Survivor’s Guilt” feeling. I really gave some thought before I wrote that sentence above, but in the context of the discussion, I figured it was relevant.
Now, why are some people more fortunate than others? I dunno — just dumb luck I guess.
IMO there is a group of people who seem immune to complications regardless of their level of control. And then there are the unlucky people who get hit hard and quickly by all manner of devasting complications. I like to hope that better BG numbers increase the number of folks in the no or miminal complication group and that terrible control might throw someone down into the complications group. But I also think that most of us understand that diabetes is more complicated than BG results.
Although you know you don’t get perfect BG numbers, you have to know that they are much better than they would be with no effort on your part or BG testing. I am also a true believer that exercise can make a huge difference regardless of BG numbers and your basketball, running, etc. are helping to keep you healthy.
Congrats on a great eye appointment!
You’re right, Scott… there’s something we don’t understand yet. But you know, even if we knew why I think there will always be that nagging sense of shame when I think about how unfair it is. But it’s not our fault and if we can’t do anything else, we can share our experiences and hope they make things easier for someone