My D Story

I had an urge today to write... and this is what came out. Its my story.

When people find out I have type 1 diabetes, the first question I usually hear is “Were you born with it?” The answer is no. I was born March 27, 1984, a perfectly healthy, if not big at 9 lbs. 4oz, baby girl. I was 3 days early… I dread to think the pain I would have caused my poor mother had I been on time and even bigger than I already was.

Mum didn’t have an easy pregnancy. In fact, a little known fact about me is that I was a twin. Mum nearly lost both of us at 7 weeks gestation, but we were fighters, even back then. Trouble struck again at 14 weeks, and my twin didn’t make it. It’s funny, but sometimes, even now, I wonder what it would have been like to have known him or her. Would we have looked alike, had the same opinions on things, liked the same foods?? Would we have been completely different in every way, hated what the other loved? But, more nagging than any of those thoughts, is this one: Would he or she have had diabetes too? It’s hard to believe that at age 23, I miss the presence of a twin that I didn’t even know… but somehow, I do.

Throughout my infancy and childhood, I was often ill. As a baby, constant colic and gastric reflux were the main issues. I developed chickenpox at 9 months old, then asthma, tonsillitis… and following the tonsillitis, strep throat and scarlet fever. I was constantly on penicillin for my tonsils. It was one bout of tonsillitis after another, until the surgeons finally decided to operate in 1992, when I was 8 years old, after I came off a 6 month course of penicillin and managed to get sick again in a matter of days.

Surgery was scheduled for Monday 19th October, 1992.

I don’t remember a great deal about this period of my life. A lot of that time has been filled in by mum and dad. Mum remembers me wanting drink after drink after drink on the night before the surgery, and put it down to the fact that I knew I wasn’t able to drink after midnight, making up for the fluids I would miss… perfectly reasonable in the mind of an 8 year old. I was still complaining of thirst the next morning when we arrived at Geelong Hospital, at 7am. Mum mentioned my thirst to a nurse, asking could I have some water, or even ice to wet my throat, but the answer was no. Surgery was scheduled for 9am.

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Surgery went off without a hitch. It was only when I was taken back to the ward that anyone started to pick up that something might be wrong. All the other children going back to pediatrics after their tonsillectomy were doing one of two things: sleeping, or quietly whimpering. Not me. Showing the attitude that people who know me would probably expect nowadays, I was standing on the trolley, shouting at the orderlies to “Take me back to the bloody theatre and put my bloody tonsils back in!”… Yes, shouting. No mean feat for someone after an operation on their throat, no matter what age. Apparently, I didn’t believe anyone who had warned me that the surgery would hurt.

I recall that night, asking the nurse for a glass of milk, and my disgust when she brought me orange juice… it burned like nothing else. I also remember copious amounts of ice-cream, boiled sweets, lucozade and flat sprite.

Over the next two days, I lost 6 kilograms, or 13.2 lbs. It was noted on multiple occasions, by doctors and nurses alike, that I was “dehydrated although drinking excessively”, as was my excessive urinary output... I was unable to walk from my hospital bed to the toilet, a distance of less than 15 meters (49 ft) without assistance… yet I was discharged, and no tests had been carried out.

The next day, Thursday 22nd October, I was a very sick little girl. By this stage, I had lost a total of 9kgs (19.85 lbs), and looked as gaunt and white as a ghost. Dad rushed me back to the hospital on the Thursday afternoon, and was told at first that I was merely sleeping. Of course, he argued this. He knew me better than that. The doctor, I still believe, was arrogant, and hated that a parent dared to disagree with him. He refused to do blood glucose or urinary ketone tests. By the time a student nurse went behind his back and took a urine sample, I was in a coma. The ketodiastix stick showed black for both ketones and glucose… Massive levels, and an almost definitive diagnosis of diabetes. Within minutes, blood was sent to the lab, and an insulin infusion was running at a rapid rate. Still now, nearly 15 years later, we don’t know exactly what my glucose level was at that first test. It was too high to read.
It was at this point that my parents were given the news that I was diabetic, and in a coma. As if that wasn’t enough, they were informed that I had massive brain swelling, and was expected to have a stroke at any moment. They were told to kiss me, and to say goodbye, to notify the family that I wasn’t expected to pull through… that, in fact, it would be some kind of miracle were I to survive the next hour. We got our miracle. Not only did I survive the next hour, but I survived the night. Enter my pediatrician, and close family friend, Dr Jenner. It was he who had the devastating task of informing his friends that, had they not brought me into hospital when they did, that I would never have survived. Mum recalls saying to him “are you telling me… I would have put my little girl to bed tonight, and she wouldn’t have woken in the morning?” His silence spoke volumes, and it was mum’s turn to start vomiting… through fear, shock, and utter disbelief.

I was still managing to fight the next morning, despite the predictions of the doctors. By this stage, they had changed their outlook to something slightly more positive… “She still has excessive brain swelling, and we are still expecting a massive stroke at any moment… IF she wakes up, she will have brain damage… she will never walk or talk again, and will be in a wheelchair for life…” The doctors were wrong.

Saturday morning, mum woke at around 6am to what she still swears is the sweetest sound she has ever heard… my voice, calling “mummy”. She cried for hours, knowing that her little girl was a fighter, and was going to beat this thing.

I was in hospital for 3 weeks. I was given my first hypo during that time, so that I could experience the sensation in a controlled environment. I remember feeling as though I was eating all day. I still felt so ill that it would take me over an hour and a half to eat breakfast. As they cleared breakfast, they brought in morning tea, then lunch… it was a constant cycle of food, clear, food.

Within a week of diagnosis, I was doing my own insulin and blood glucose tests. Of course, I was also testing whichever nurse happened to be doing my blood glucose at the time… Enter Paul. Paul was a student nurse, 21 years old. After cajoling and working to convince him that a test wasn’t that painful, I managed to get his sample… 383, and high ketones when we convinced him that he needed some urinalysis too. Within a couple of hours, he was sitting beside me, proudly showing off his tummy… the site of his very first insulin shot.

I’m no longer in contact with Paul, but I do think of him often. I know he graduated back in 1993… 14 years ago now, and I pray that he is well. He was 21 then, so I can only guess that he must be married with children of his own by now.

Diabetes hasn’t gone away. It never will, no matter how many times, or how fervently I pray that it would. But I have realised… I have diabetes. It doesn’t have me. It has changed my life. At times, it dictates the way that certain things have to be done. But I can’t and won’t let it control me, my life, or my thoughts. I am me, a person who has Diabetes, not Diabetes, a disease that has me.