Diabetes.

I wonder what my life would be like today if I did not have diabetes.

I would be employed. If diabetes had never entered into my existence I would most likely be employed as a middle school Social Studies teacher either somewhere in the Bay Area (probably Oakland) or in Reno. I would work during the school year, volunteer my time helping my community, climb in the local gym with my friends, and climb outside on the weekends with those same friends. That was the life I expected to create when I first moved to the South Bay Area in 2003. As a result of the opportunities I experienced while living in the South Bay, there is a good chance I would still be working as a mountain guide in southern Yosemite during the summer seasons as well.

I think I would be married. In fact, I know who my soul mate was that I should’ve had children with, but Life tore that possibility away from me with more devastation than simple diabetes. I will live the duration of my life with conviction about the primordial axiom: LIFE IS NEVER FAIR.

Those are the two biggest sacrifices I believe I have had to make because of my diabetes: career and family. Instead, I find myself having to imagine a new life for my future. Diabetes effectively killed my ability to begin a career in education during my early thirties. Now, in my early forties, I find myself struggling to want the same life I had imagined over a decade ago. The life I want to live now centers around the mandatory routines I must perform in order to feel healthy and to have the physiological capacity to accomplish the routines of daily life.

My diabetes has never been easy to manage. All the facts listed about diabetes in the medical literature sometimes fail to be accurate in my personal experience.

Last January, I was in the hospital for Diabetic Ketoacidosis caused by Influenza. It was a condition where my blood glucose levels had become so high they made me very sick. I spent two nights and two days in the ICU until my glucose levels were brought back down into range, and the dangerous ketones in my blood were flushed out of my system. By evening of the second day, a bed finally opened up and I was transferred to a room in the main ward, with the expectation that I would be released from the hospital in a couple of days.

I closed my eyes that night believing I would sleep, wake up, eat breakfast, talk to my doctor, and then get well enough to leave the hospital the next day. Instead, I woke up around 1:00 in the morning feeling sick from high blood sugar. My nurse came and, after checking my blood sugar, we learned that it had risen above 250 (100-120 is considered to be a ‘bull’s eye’ target range for us diabetics). Blood sugar levels, according to the medical literature, rise only when carbohydrates are eaten (the medical community has only recently begun to understand the connections between glucose levels and stress). I had not eaten anything and my stress levels were lowered because of the treatment I believed I was receiving. So, why was my blood sugar steadily climbing? Why was my liver kicking out glucose into my system while I was peacefully sleeping? These are questions no one has ever been able to answer for me.

What I do know is what happened next:

My nurse called the nighttime on-call doctor to get permission for administering insulin to lower my glucose levels. My nurse was amazing! He did everything in his power to try and help me. In fact, my nurse was a Type 1 as well (diagnosed at the age of 27) who was using a pump. He knew exactly what I was suffering through. He even mentioned how much he wished he could just give me some of his insulin to help, because the nighttime on-call doctor NEVER called back to give permission for my glucose levels to be lowered to a healthier level. We never learned why. No one ever told me why I was allowed to lay in my hospital bed, the first night out of the ICU for DKA caused by high blood sugar, and have to suffer through the sickness of having my blood sugar climbing uncontrollably. By shift change at 7am, my day nurse arrived in time to hand me my second vomit bag for the morning because I was uncontrollably nauseous–AGAIN!

The daytime doctor finally arrived to begin her workday and managed to prescribe me some corrective insulin, but I was now required to stay in the hospital another night because my blood sugars were out of range. Also, by this time, my electrolytes were wacked and needed to be replaced. I was put on a magnesium drip that was expected to finish in a few hours, but it burned so bad going into my arms I could only handle the pain for an hour or so at a time. We were constantly moving the IV between my arms. It was the first time I have ever needed to have more than one IV. I finally managed to finish the magnesium bag by the end of the day.

I spent two more days in the hospital because my doctors were incapable of bringing my blood sugar levels down into an ‘acceptable’ range. I was not able to administer my own insulin intake because my pump resevoir was empty (a mistake I will never make again!) and I was reliant upon the doctors to administer the ‘correct’ amount of insulin for my health needs. The problem with relying upon doctors is that they follow the ‘established medical guidelines’ as to how much insulin to administer. Again, the problem being that I do not always fit into the ‘acceptable target range’ of what the doctors expect from Diabetes. The amounts of insulin they were providing me with were simply insufficient to the task of lowering my glucose levels.

***Here is the crux of my agitation with the medical community: they are terrified of insulin! My doctors were so afraid of administering too much insulin, and dropping me into hypoglycemia, that they were simply unwilling to listen to ME and give me the amounts that I KNEW to be what I needed!***

I feel justified in making this statement: I KNOW MORE ABOUT MY DIABETES THAN THE DOCTORS EVER WILL.

I don’t remember my second night on the ward, but I do remember my blood sugars never lowering into range during my second day spent in that ward. My third night, however, was spent with a different nurse and I remember this night very well. By this time my doctor had left a standing order for insulin to be administered when needed. My new nurse was not a native english speaker. I freely admit I pushed her for the right to determine how much insulin I was administered. When I ate dinner that night, I estimated the carb count for my meal and entered the numbers into my pump for the Wizard program to do the math. The hospital menu I was allowed to order from (as a diabetic) had the carb count of each item listed. As a diabetic, I was allowed to only order so many carbs at a time. I ignored the damn menu’s carb count. It did not match the estimate of carbs that I had learned to make over the years by looking at the food I was going to eat in front of me, and then determining how each item of food may affect my blood sugars from past experience. I told my nurse to give me the amount of insulin suggested by my pump. I had to round the number up to the next whole amount because syringes are incapable of providing the small amounts of insulin the precision of a pump can deliver.

My next blood check was two hours after I ate and my number was not too high. The nurse wanted to wait another three hours before checking again, but I told her to come back in an hour before I went to sleep. I was not using my own test strips because I only had two left (another mistake I will never make again!) and I needed them for the ride home once I would be allowed to leave the hospital. In an hour my blood sugar had dropped to 75, which is close to technically being labeled as hypoglycemia, but is also typical in my daily life experience. I asked the nurse for some ’emergency’ carbs and she brought me two pieces of toast and some peanut butter. I could tell how nervous she was from my blood sugar being so low. Maybe she was simply worried because she had allowed me to tell her how much insulin to administer rather than giving me the amount the doctor expected for the meal I ate, but I am used to this nervous reaction from medical professsionals when confronted with a glucose level ‘too low’ for their comfort.

Knowing my diabetes as intimately as I do, I knew only one piece of toast with peanut butter would be sufficient. The nurse was worried that I didn’t eat the second piece, but I comforted her by telling her I would keep the toast next to my bed in case I needed it later. Now that she knew I had corrrected my low with the ‘correct’ carbohydrates my nurse felt safe leaving me alone for the night. The doctor had required my blood to be checked every three hours, but I told her to come back in an hour and wake me up to check my blood again. I am not ashamed to admit I pushed the nurse again for my healthcare to be provided to me the way I needed it to be. And it was a good thing that I did push her because, within that single hour, my blood sugar had risen to 170 from a single slice of bread, and I needed to tell the nurse how much corrective insulin to administer. This time I was confident enough to let her wait the three hours to check my blood like the doctor had determined.

During the rest of the night my glucose stayed steady and in range. When I had my first check in the morning before the doctor came in I was at a beautiful and healthy 117! All because of my determination to ignore everything the doctor wanted to be done for me. Unfortunately, I had to remain in the hospital for the entire day because I allowed the doctor to make the determination for my insulin during the daylight hours. . . and my sugars never came back down into range after my first meal of the day. In fact, I only ate two small meals that entire day, and my glucose levels never reached my target range because of my doctors unwillingness to listen to me when I tried to tell her how much insulin I should be given.

By five o’clock that evening I firmly informed the doctor I was leaving the hospital despite her belief I should stay another night for observation. I told the doctor that the only time my blood sugar levels had been stable during my entire stay under her care had been during the previous night when I had been in complete control of my diabetes. This was not the first time I have had to call out a medical professional for treating diabetes as if it were a cookie-cutter disease that affects everyone in exactly the same way, nor do I expect it will be the last, but it was the first time I ever forcibly had to advocate for myself with the belief that I do know more than my doctor about how to manage MY diabetes.

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The life I now live is a Diabetic Life. It is the only life I will ever know for the rest of my life. I have no option to live any other kind of life. Diabetes is my lot in life. Fortunately for me, I am learning how to live my life as a healthy diabetic with my blood sugars under control. It was my nine years spent working at the pool that allowed me the opportunity to learn how my diabetic life would be able to work for me. Without my experiences at the pool forcing me to become more aware of the effects diabetes has upon my personality, I believe there are several emotional and behavioral manifestations of my diabetes, and the way it affects the people around me, that I would still be ignorant of and incapable of mitigating within my public and social spheres.

I am grateful for my experiences at the pool. I am a better person for having had to deal with all the struggles. I have a clearer understanding of who I am and what I need in order to be healthy. I have gained a secure level of self-confidence I do not believe I would be capable of without having had the experience of fighting for my survival in an environment of pervasive harassment. The pool created a crucible in which my comprehension of what it means to live a diabetic life led me to recognize and become aware of the hidden and confusing ways in which discrimination can manifest itself in our daily lives. Learning to navigate the various forms of gender and racial discrimination I face everyday as a black woman were nothing compared to the experience of being discriminated against because of my invisible disability. Simply coming to the realization that I am in actuality ‘disabled‘ was a trial of self-awareness I may never have accomplished without my experiences at the pool.

I am not sharing my story to hurt the pool, or the people still working there. My goal is nothing more than to make the pool a better place to work. I want the pool to be a place where a black woman with diabetes can safely work without being hassled by her bosses for being a ‘bitch.’ Period.