Type 1 diabetes.
I once wrote that having diabetes was like living with a roommate determined to kill you. You have to keep your eye on Diabetes and keep him at bay, never turn your back on him and always know where he is and what he's doing.
And with kidney disease wreaking havoc on my blood sugar levels in recent months, maintaining my diabetes has threatened my life on many recent occasions.
It almost killed me in January. (See this Jan. 17 post for that description.)
Understand, too, that I respect doctors. I would always insist that patients listen to their doctor and follow his or her instructions. That said, I also know from experience that a doctor's advice has to be applied to personal, hour-by-hour, minute-by-minute circumstances that the doctor can never fully understand.
One blog reader with diabetes told me recently that his doctor grew angry with him when he disagreed with his doctor's recommendation about his regimen of treatment.
"Are you a team player?" the doctor asked.
"Yes," the patient replied, "but I also own the team."
When I was in the hospital in January after a really bad bout of low blood sugar, a doctor on the phone insisted that my insulin regimen was all wrong. He disagreed with my practice of taking my full daily dose of Levemir, the long-lasting insulin, all at once each morning. That's 70 units. He told me I should take half in the morning, half in the evening to smooth out the dose.
I listened. Oh, I argued with him, but I listened.
And I did recently begin dividing my Levemir dose into a morning and evening dose to test his theory.
One hundred percent DISASTER.
For four of five early mornings, my wife Suellen had to work on me for long periods of time to bring me back to consciousness from serious insulin shock. The final time she brought me back — and it took a full hour — she rightfully was mad as a hornet, while I was still foggy-brained but angry and disappointed for letting it happen yet again. She was losing sleep; I was worn out, tired and frustrated.
So last week, I resumed my old practice of taking my full Levemir dose in the morning. Granted, it causes lower blood sugar when it kicks in each mid-morning until lunch time, requiring caution. The advantage is, I'm awake during those hours and react consciously to low blood sugar by drinking juice or eating a snack.
At night, when asleep, my blood-sugar levels aren't as dynamic because the long-lasting insulin has begun to fade in strength. My sugar levels tend to run a little higher, or drop more sluggishly. But blood-sugar levels are more predictable and easier to control.
This works for me. It might be a disaster for others. The doctor could be right for the majority of insulin-dependent people, but it did not work for me.
This is a long way of saying you should heed your doctor's recommends. He or she is expert. He or she understands the science, the metabolism, the medications and those crazy endocrine glands. He or she knows the theory of diabetes control.
But most doctors haven't lived with the disease or had to maintain their own blood-sugar levels, which is not as easy as the theories suggest. Every day, diet changes, exercise levels vary, stress levels peak or drop, and those all have to be coordinated with insulin injections, blood testing and calorie counting. Diabetes is an unwanted lifestyle — that roommate that wants to kill you. It takes time and effort, nuance and trial-and-error, mistakes and discoveries, before you find the best protocol to control it.
And control means preventing sugar levels from climbing too high or dropping too low. Add the fact that kidney disease completely throws off normal blood glucose levels and can cause insulin to pool in the blood. It makes blood levels generally go haywire.
As such, my life and Suellen's has been a nightmarish roller-coaster ride.
But for the past few nights, I've succeeded in keeping my sugar in the 100 to 130 mg/dL range, just above the 80-to100 normal range. It's right where I want it, with a safety cushion.
I'm gaining confidence once again that I can perhaps, without guarantees, survive diabetes until transplant time. That might sound like a throw-away statement, but surviving wildly fluctuating blood-sugar levels is a major concern that's left me unconscious enough times to prove how difficult it is to survive these episodes. And while I'm surviving, perhaps my diseased kidneys won't survive them.
I'm hoping recent actions will keep my engines chugging until the much anticipated arrival of needed replacement parts. After the mechanics are done with me, I'll be back on the road.
Note: in an upcoming blog I'll pay tribute to a very special lady, Suellen, who's saved hundreds of lives — or more accurately, save my life hundreds of times over the past 35 years.