Sunday, October 6, 2013

The Problem with Pod - part 2 Developing as a Diabetic

I went to my 35th high school reunion recently and it was great to see all of the people that I shared some of my most formative years with and yet as good of friends as we were back in the day have not seen each other for 20 years in most cases.

What surprised me (and always surprises me) was the fact that what most of them remember most about me revolves around my T1D.  I was surprised when a guy I played football with remembered me getting to have candy bars and cokes during our freshman football year because I was having lows.  (funny thing about that is I was not diagnosed until 4 months after the season ended. :)

I finally convinced him that he must have been remembering our sophomore year, but he went on to share with me that he was sure that I was faking, just to get out of practice (not to mention get candy bars and coke).  It brought back the memory to me of how I always felt like people thought I was faking and that I should just man up and do what had to be done.

Frequently this involved denial of low blood sugars.  In other words, I would try to tough it out when my BG (blood Glucose) was low and try to act like it wasn't happening. This is a problem that I still deal with today. Because I was paranoid about people thinking that I was making it up.  Ad to this that my parents did not seem to realize that a low BG was immediate danger that could result in convulsions, unconsciousness, possibly brain damage and death!

I remember one day that my dad and I were out on the farm doing some work and I told him I was having a reaction (we called low BG and insulin reaction in those days) and he told me just to hang on another half hour and we would head back to the truck.  I know it seems unbelievable, but he just didn't know, because that wasn't something that the doctors had told my parents that they needed to be worried about.  They needed to be concerned about high blood sugar because that could cause "COMPLICATIONs" (whatever those were)

At this time, my only feedback on my BG was a urine test that told me if I was high enough to spill sugar or when they took a tube of blood from me at the Endo's office and told me the next day what my level had been.  So I have no idea how low I got in those days, but since I have been able to self test, the lowest I have had is "low" which means below 20 and I was still ambulatory, even though functioning at a very low level.  (if you are not aware, it is generally accepted that normal BG should be between 70 & 110, although I personally believe that a non diabetic with a 70 BG will be grouchy and may complain of a headache if they live there very long)

When I was diagnosed, it was not known that T1D was an autoimmune disease, so I had to endure people telling me that I was T1 because I had probably ate to much candy, etc... once again my fault. The same thing a lot of T2D people have to endure currently. (my money says that eventually the 2 diseases are going to be linked in a huge way - after all my Dad was diagnosed T2 in his 60s and my Older sister was diagnosed T1 at 50 - seems to be a coincidence that we have both types in my family)

But I digress,,, all of my high school peeps remember my T1 and have stories of me eating apples in the school hallway, getting orange juice for my "attacks" , winning the candy sales (likely eating all the candy as the cause of my disease :) - I'm actually quite adept at sales and while I ate a box or 2 that was strictly for medicinal purposes)

What most don't realize is that I had a remission in my teens where, I actually was completely off of insulin for several months (seems like this covered a football and wrestling season... hmmm) and was taking a very small dose for close to 2 years, less than 5 units per day. (a unit is 1/100 of a CC, a bottle of insulin contains a thousand units)  I really believe that a lot of this high sensitivity was due to the fact that I was very active.  Video games were not in vogue until I was in College and even then you had to go to an arcade and spend your quarters, so it was not something that you spent a lot of hours with.
But I cut and split firewood to supplement our family heating needs (which kept me busy year round), was constantly in sports and still had time to get into plenty of trouble. (another batch of stories that I will share in time)  So not a lot of sitting around time.

Skipping ahead so that all of my titles don't have to do with my Pod for the next year, I was mainly medicated by Lente insulin with bottles of NPH occasionally for the next 25 years.  If I remember right I settled in somewhere around 20-25 units per day.  I had also learned a trick from another T1D that I could use Regular for a booster when my sugar was high, to get it down quicker.

I need to interject here that when personal glucometers first became available, I started out checking my BG on a regular basis until I realized that it stressed me out and made my BG go high since there was nothing that I could do about whatever BG I had at the time, other than not eat.  I told my Dr about this (who mostly dealt with T2 patients and was met with skepticism) In your face Dr!!! we now are sure that stress can cause a spike in BG.

It must have been about 2001 or 2002 that I finally got medical insurance through work and got hooked up with my current Endo. He got me started on a regimine of Lantus (a basel long acting insulin with virtually no peaks) and Humalog (a Lily fast acting insulin, that allowed me to calculate my dose based on what I was eating)

This new treatment changed my life.  I went from 2 shots a day to more like 5-6 shots and began checking my BG many times a day as I could now do something about high BGs to correct.

Now People would ask how many shots I took per day and when I told them, I would get scolded or told that I must have gotten worse diabetes (this resulted in a lot of eye rolling on my part) I would try to explain to them that no, my diabetes was actually more manageable as a result of my new treatment, but you could see their eyes glaze over and they would go on knowing that "I was not taking care of myself"  (sigh)

But the unpredictable crushing lows were assuaged and life became a lot more manageable for me. Testing became a routine that was actually helpful in my control and my A1Cs were coming into line, in the low 6s.

When I graduated from Purdue in 1983 I was offered a job as an Industrial Engineer with a division of PR Mallory and flunked the physical because I was asked if I had any serious illness and asked if Type 1 Diabetes was serious.  The company doctor got with my doctor who of course doubted that my control was very good and asked me to submit to a new test that they had at the time (an A1C glycohemoglobin - a test that measures the attachment of glucose to red blood cells and gives  an approximate average of what your BG has been over the life of that cell - about 90-120 days) My A1C came back 7.2 (apparently a bad thing if I was type 2 but sort of the gold standard for type 1s these days) The 2 doctors agreed based on this result that I was not in good control and was basically, "a ticking time bomb" a time bomb that is still ticking 30 years later,,,,, I must have a much longer fuse than those 2 doctors thought. :)

Next Episode (final Pod title I promise)  Of Pumps and Pods

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