Monday, September 30, 2013

The Problem with Pod Part 1 - How it all began

Having been diagnosed with T1 diabetes (T1D) in 1974, I have seen a lot of changes in the way that I am able to treat and manage my diabetes. In this series, I am going to start at the beginning so that those of you who have not had this blessing can appreciate:
  1. the quality and ease of management available as we know it today (I'm not saying it's easy, just better)
  2. the advances we have had in our management as a result of organizations like JDRF (who recently changed their mission statement to include, Improving the lives of those living with T1 Diabetes)
  3. the benefits as well as pitfalls that I have experienced in my journey as advances have occurred and hopefully help you to at least be aware of the downside in advance
As I said before in March 1974 I was diagnosed T1D.  I was 13 years old a freshman at Roncalli HS in Indianapolis,IN and looking forward to spring break. I had been going to the bathroom a lot for a couple of weeks, was drinking a lot of fluids (Kool Aid by the gallon) and was urinating so frequently that I could not make it from the bus stop downtown after school to the gym 2 miles away with out having to find a place to relieve myself...... it was really bad and awkward.

This whole time, I was worried that I had a bladder infection because my older sister had recently had one and had to get a shot.  I was terrified of needles and did not tell my parents about my problem just because I didn't want to go to the doctor and get a shot!

Imagine my relief when I was able to get out of the doctors office and got out of there without a shot! My parents took me home packed a bag and we headed to Community east hospital.  I'm ridding along in the back seat of  our 1972 deuce and a quarter happy as a clam, I didn't get a shot (and believe me when I tell you that I had been really worried about that). This is the Friday and I had gone to the doctor after school and was really looking forward to that spring break.  I don't know why the suitcase didn't clue me that this was going to be an overnighter.  Turns out my whole spring break was to be spent in the hospital.

I get to Community and the nightmare begins.  My GP had just done a urine test and it came back Wish I could find a picture of this kit, it was something! This is what the doctors did in their office and this was to be the method that I used to manage my control for years to come.
bright orange.  In those days you got a neat little in vitro chemistry set complete with a test tube and eyedropper and you put a measured amount of urine with a measured amount of water, dropped a tablet and watched the magical reaction (the test tube got really hot when you did this).

So back to the nightmare, the first thing they do is draw blood (needles) then a little later, they give me a shot of insulin (I don't remember the details). It was about this time that I realized this was going to be a bit more long term than I had initially thought.

I learned a few things over the next few days
  1. Diabetes is incurable (still is, not much change there)
  2. I was going to get very familiar with a needle and was going to have to use it on myself :( 2 shots at day :(
  3. The insulin that they were putting me on was a relatively new product called Lente (now a discontinued product as of 2005)
  4. I was going to have to change the way I ate and had to learn about something called the exchange program
  5. If I took care of myself (whatever that means) I would not get complications (whatever those are)
  6. a bunch of other stuff like how to test my own urine for sugar, test for ketones, a little bit about lows and highs (BGs)
I had a roommate in the hospital that was an older guy who had started out managing his diabetes with diet but then ended up on insulin and was battling blindness due to "complications"

At the time I thought that I could take insulin orally but soon found out that the oral medication was for adults only and that "Juveniles" were always started on insulin. Knowing what I now know about the oral meds, this is a blessing indeed that it went that way for me.

This was all sort of scary to me, but on the other hand, I was a teenager and invulnerable at the time, so most of the worry stayed in the back of my mind and all I knew was that this was the worst spring break that I had ever had.

I got to leave the hospital in a week (just in time to go back to school) and I began to learn what it was like to live with T1D.

At the time it was taught that the lente insulin's action was very predictable and that it went off like a Swiss Watch, meaning that it would act stronger on my metabolism at some times than at others.  This is called a peak.  The modern charts that I am still able to dig up paint a bit of a different picture that fits a little closer to the reality that I lived in.

Modern charts for this tiype of insulin look something like this :
Starts 1–3 hoursPeaks 4–9 hoursEnds 14–20 hoursLows most likely between 4–16 hoursintermediate, less peaking, larger action
Quite a bit more reasonable that thinking if I took my shot at 8am I was going to hit a peak at 3pm and structuring everything that I did around that.

But that is exactly what I did for close to 25 years.  I now call that fueling to my insulin.  But I constantly had doctors telling me that I was doing something wrong when I would consistently get low BGs before noon as my insulin was not peaking until mid afternoon. (in their minds somewhere between 2 and 4pm based on an 8am shot.

Next time, my D life changes with new medicine.