The Superman Years: The Emotional Life of a Parent Caring for a Child with Type 1 Diabetes
By Linda Rupnow Buzogany, MS
Copyright © 2012
NOTE: Excerpts are provided on dLife.com for informational purposes only. The information contained within will not be updated by dLife and may be outdated. Please consult your doctor before acting on anything described here.
Don't Demand Perfection Unless You Like to Fail Repeatedly and For the Rest of Your Life
After the medical visits taper down from the initial marathon session to once every few months, in a short time you go from helpful, knowledgeable, and understanding medical staff to a world where no one else seems to have diabetes or understand it. Daily life with the diabetes begins and you kind of look around your house with a bewildered feeling knowing nothing is the same. The experience changes from, "What will this be like?" to "Here is what it is."
If cluelessness saved me that first night, it was pure adrenaline that got me through the next few months. I felt in a constant state of nervous system activity –my brain and body emitting a "tired but wired" kind of feeling. There seemed no time to think about anything else but getting this down, getting this right, never making a mistake, and controlling blood sugar.
My personal quest was to get a number "in-range" every time we tested Ty's blood sugar. Anyone see a problem with this? We checked his blood sugar about every two hours, sometimes more, and charted every number, trying to control for all the variables. I peered into them, looking again and again to see if any patterns emerged; searching for a magic combination of insulin dose and number of carbohydrates which would produce the same results twice, but this has still yet to happen. Too many factors affect blood sugar: foods, insulin, exercise, growth hormones, even a change in season for God's sake. It's impossible to predict which factor is going to affect blood sugar in which direction and when.
With all these variables, the insulin does not perform reliably. Sometimes it absorbs rapidly and overshoots the mark and sometimes it doesn't seem to work at all¬ ¬– an hour and a half later, the same or even higher number appears on the meter screen. It doesn't take long to realize insulin dosing is really no more than a "guess, hope, and pray" kind of decision every time. You inject the insulin and hope it works right this time. Pray I don't drop him to the floor.
With exercise, one of two things might happen: the amount of sugar in the bloodstream might go high or might go low. Physical exertion generally drops blood sugar very quickly; however, if there's not enough insulin in the bloodstream to open the cells to sugar, or if stored sugar in the muscles and the liver is released in response to adrenaline, then it will go high for awhile before it is settles back into the muscles and drops sugar unexpectedly hours later, perhaps deep in the night. If you are one who likes things concrete and predictable when it comes to keeping your child safe, you may silently begin to go crazy about now.
For months I kept learning some new thing about the disease I didn't know before, usually the hard way. One time early on I checked Ty after a bath and caught him at a low number at which he should not have been able to stand. After I treated it, I called the clinic in a panic. Oh yeah, they said, if you give him a warm bath too soon after a shot, it will open the capillaries and allow insulin to be absorbed too quickly and cause a bad low.
We also didn't know, even living in the Rocky Mountains that a change in altitude affects blood sugar. When we thought we were settling into the life a bit, we decided to try to be a normal family and do what we would normally do –go to the mountains for a weekend, rent a boat, and spend some time on the lake. It would be good news for us, we thought, to maybe breathe a little again.
We had so many blood sugar readings in the three hundreds that all we wanted to do was come back down the mountain to our house where we had had better luck. (That was also the same weekend we accidentally drowned the meter in the bait box without having brought a back up. We were such rookies. You never do that more than once).
Consumed as I was with the learning curve, I had not even considered what Ty might deal with as an adult until I caught wind of a conversation between two fishermen casting just offshore early one morning on a glassy Wisconsin lake where my husband and I both grew up. I had taken my coffee to sit on the docked pontoon in the dappled morning sunlight and it was the first time I had felt relaxed in a long while. Sounds carry from great distances with great clarity over water and I could hear them perfectly. I tuned in when one was telling the other a story about a buddy of his who was arrested just the other night, put down on the ground, and handcuffed. I listened to hear what his buddy had done. In the north woods of Wisconsin, it could be any number of entertaining, drunken reasons.
"Turns out it was his blood sugar." You've got to be kidding, I thought to myself. He explained the guy was having a low and resembled an agitated drunk person. He was unable to respond to the officer's orders.
Ty was so young when I heard this I didn't picture him yet as a man possibly in need of emergency medical attention in the future, and that he might be shoved to the ground and shackled for it. I shook my head and headed up to the cabin, peacetime over. There would be a long road of challenges ahead that I could not even imagine.
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As I mentioned in an earlier post, one of the benefits that made it cost-effective for me to go with the real healthcare (HSA) plan rather than the phony (HRA) plan is that my company is now covering "preventative" medicines at $0 copay. The formulary for these, as stated by CVS/Caremark (my pharmacy benefits provider), covers all test strips, lancets, and control solutions. I dutifully get my doctor to write up prescriptions for all of my testing needs, submit...