Continuing to live with Type 1 Diabetes

Yes I know, isn’t this a political blog? Well I want to talk about something while I’m thinking about it and there is (as always) a political aspect to it as there is everything in life these days (sadly). One disclaimer, though diabetic, I’m not an expert nor do I speak for the American Diabetes Association or the Juvenile Diabetes Research Foundation (both of whom I donate to regularly). What follows are my personal experiences and views of the condition.

In 1971, shortly after my tenth birthday I wasn’t feeling too well. I tired quickly, I was always thirsty, I was always needing to go to the bathroom, and I was getting less attentive and focused in school. Remember, this was long before WebMD and the internet. Nobody knew what was wrong and parents in those days rarely called, let alone took their kids to the doctor for every problem that occurred.

One day I really wasn’t feeling good. I was throwing up and was in pain. I got to stay home from school and my oldest brother was taking care of me. Like all good older brothers, for lunch he went out and got me my favorite snack at the time, Hostess Ding Dongs. Later that night I was in terrible pain and woke my parents. While on the way to the hospital I lost consciousness and have no memory of what happened later that night. According to my mother, upon arriving at the emergency room, I began to scream out incoherent things and was thrashing about. The intern at the time told my parents that it was obvious I was undergoing some psychotic episode and was about to sedate me. Another doctor who was there at the time noticed a sickly sweet aroma coming from my mouth. He stopped the intern, ran some tests and found my blood sugar and ketones were off the chart, I was diabetic. I soon lapsed into a diabetic coma.

Little was commonly known about diabetes in those days. Even today many don’t really understand it. Most don’t know there’s a difference between Type 1 and Type 2. Both have a genetic component to it but Type 1 (commonly known as juvenile onset diabetes) involves the pancreas shutting down completely in production of insulin, the hormone the body needs to break down sugars in the body to fuel it. You don’t need to be a child to get type 1, you can get it as an adult like Mary Tyler Moore did. The more common Type 2 diabetes essentially involves the body still producing insulin, but can’t handle it properly. In many cases Type 2 diabetes can be controlled by diet. Both conditions have severe complications involving blindness, kidney failure, heart disease, neuropathy, amputations, etc. There is no cure or reversal of Type 1 diabetes. You get it, you have it until the day you die and controlling it involves daily injections (or infusion) of insulin. Type 2 diabetes can still require use of insulin injections/infusions but often can be treated via various oral medications.

As a ten-year-old, I had a huge sweet tooth. I loved candy especially chocolate. On one hand I actually thought that giving myself insulin injections daily was cool and I would freak my friends out telling them about it. Protocol for me those days was taking one injection of U-80 Lente Insulin, which was extracted and made from pork pancreases. It was only in the 1980’s that human genetic insulin came on the market. Testing in those days involved dipping a test strip in urine to see how much sugar your body was throwing off. Not very accurate in any sense of the word. Today they have glucometers that test your actual blood sugar to aid in determining how much insulin is needed to deal with background sugar and cover the carbs you’re about to consume. Insulin pumps keep a regular flow of insulin (basal) for background sugars and immediate infusion of insulin (bolus) for meals. Not perfect but much more accurate than injections once a day.

I was not a poster child for diabetes control. I took my morning shot of Lente, rarely checked my urine sugar levels and ate processed sugary treats and snacks and drank regular Pepsi like nothing was wrong. The only saving grace I suppose was that I was always active. I burned a lot of the sugars off. However upon reflection and as I understand today, this routine probably had my A1c very high (something not regularly tested in those days) and also made me prone to “insulin shock” where there’s too much insulin in the body for the sugar there. Insulin shock can leave someone appearing inebriated if not insane. It impacts the mind. Thinking back to those days I probably had multiple shocks and friends or acquaintances simply thought I was crazy up through my teens and twenties (if not still today). So throughout my teens and twenties I wasn’t injecting the proper amount of insulin for my needs, ate all the wrong foods and consumed too much alcohol when with my friends. You could say I was living in denial of my condition and you would be correct.

When I turned 25 I went to work for the Adult Probation Department as a probation officer. Few knew I was diabetic because I wasn’t sharing that information out of privacy and upon learning when I signed up for health insurance I was told I wouldn’t be covered at all for six months due to my “pre-existing condition”. I honestly felt discriminated against and unlike most minorities I could simply hide who and what I was by just saying nothing. Problem was, as noted above, I would regularly succumb to episodes of insulin shock on the job. The logical assumption from many co-workers and defendants for that matter was that I was drunk, on drugs or insane. Eventually I had to make disclosures to save my job. The catch-22 of the time was this was before the Americans with Disability Act. They could have terminated me immediately because I was diabetic.

Eventually I began to take better control (though not perfect) of my diabetes. Though still on injections I started to have a better sense when insulin shock was coming and I began carrying hard candy to get my blood sugar back up. My job performance became more stable and I was eventually promoted to supervisor. However as I grew older it became more difficult to sense insulin shock coming. Fortunately technology came to the rescue. In addition to the aforementioned insulin pump that better delivers insulin to the body, they came up with a pump that monitors your blood sugar in real time. Though not perfect, it’s been able to sense my blood sugar dropping and simply stop infusing insulin and giving me an audible warning to check my blood sugar.

I’ve been on the pump with glucose monitoring for about five years now. Just under 18 months ago I retired from Adult Probation after 30 years on the job, the last 18 years as a supervisor. During my time with Adult Probation I believe I’ve served the community by assisting probationers in adjusting their lives to becoming productive and for those who wouldn’t, getting them off the streets. I’ve assisted victims of crime in getting their restitution paid. I’ve trained many Probation officers who continue to serve the community, some now in management themselves. Had I not lived or had I never been hired or even fired for my condition, I would’ve never been able to make this contribution.

Now you can say that were it not for me, somebody else would’ve stepped in and done what I did. That’s true. In a sense none of us are indispensable. However when you begin to look at people in that way, where do we draw the line? Further, when do we formally begin to determine the level of “dispensability” of people and remove them from the equation?

I’m now retired, still relatively young and I’m about to volunteer my time working with newly diagnosed Type 1 diabetics in adjusting to their condition and life change. However I understand that even coming from a diabetic himself, individuals accept these things on their own personal terms and understanding. I may or may not be able to assist them in a positive manner, but it won’t be for lack of trying.

Now here’s where the politics come in. Diabetes is merely one of many chronic medical conditions we face in this country and the world. The United States lags behind the rest of the developed world in addressing these health conditions and those who suffer from them. As of 2015 there are 30.3 million Americans with Diabetes, 23.1 million who’ve been diagnosed and 7.2 who have not been formally diagnosed. Of these, 1.25 million American Adults and Children have Type 1 diabetes. For myself with insurance, I pay over $600.00 a month for insulin pump supplies, insulin, test strips to control my condition and remain productive. I’m very active still. I run marathons, I exercise nearly daily, I’m volunteering my time to aid my community, and I’m not a slouch.

Under our current Republican lead government, a movement is on to place corporate profits over everything. Medical costs are ever increasing for a myriad of reasons, insurance companies lose profits paying out to those in need of those medical services. To maintain profits for the insurance companies, exclusions for pre-existing conditions or possibly increasing premiums for them or the copays for various medications or medical devices is being looked at and implemented into law to reduce the impact of the ACA (Obamacare). Regulations designed to protect and assist those with medical disabilities are on the table to be removed by a government who despise anything called “regulation” and vowing to remove them to assist the private market and their profit margins. In doing this, we will all suffer as a nation.

Majority of diabetics are Type 2, which though still genetic in underling cause, is exasperated by poor education, poor diets, and use of high fructose corn syrup in just about every snack food these days, issues that some government regulations and/or public education services could address and alleviate thus reducing the numbers of those who end up suffering. But Republicans oppose such efforts while also opposing assisting those who are then afflicted by this condition.

It’s not just diabetes. It’s asthma, heart disease, blindness, cancer, mental health, a whole myriad of medical conditions affecting Americans of all heritage, socio-economic background, religion, party and political ideology. To ignore the needs of these Americans is to betray Americans in need. You can’t allow a government to operate on an ideological premise that people are dispensable; for if that’s true, well I know of a lazy, overweight, elderly man with clear signs of dementia who sees himself as indispensable while eating all the wrong foods, not exercising and not taking the time to learn about or treat his condition. Maybe we need to start there.