Why did the insulin die in my pancreas?

Imagine being 8 years old and diagnosed with Type 1 DIabetes.

Imagine being admitted to hospital with DKA time after time because insulin therapy and living with Diabetes were the least of your worries.

Imagine living in a town with a population of 100, hardly a dot on a map, and innocently revealing your sexuality to your family, and therefore the entire community.

Imagine, at 13 years of age, being viciously attacked and assaulted in broad daylight, leaving you hospitalised and in sheer agony?

Imagine being taunted and stripped of your dignity too many times to count when your weight began fluctuating through puberty?

Imagine if you became estranged from your family,especially when you need them the most?

Imagine moving with four hours notice to a capital city to commence boarding school, struggling with your sexuality,not to mention out-of-control blood sugar levels, and feeling abandoned and stranded by your family?

Imagine, developing and defeating a four year battle with self-mutilation and bulimia nervosa, or in this instance, diabulimia.

Imagine if you had to spend six months recovering in rehab.

Imagine if you were already suffering from diabetic complications.

Imagine if all of the above were true?

Here is the true story of a 26 year old man, whom I have had the pleasure to speak with over the past few weeks. Despite his many devastating life experiences, he is a remarkable human being who has become a credit to a society that gave him little in return. 

Leith has agreed to share his story with us, hoping that it will help others who are suffering from issues that he has lived through and survived. Some parts of his story are difficult to read, or even comprehend. However, he is alive, well and looking forward to the future.

His bravery, courage and frank discussion of his many challenges made for outstanding conversation. 

Here is his heartbreaking yet incredible story. 

Leith! Thank you so much for agreeing to share your life story! I feel so privileged that you have chosen to share such personal events with me! 

My pleasure, Kate. I only hope that someone who is googling “Diabetes and bulimia,” ”Diabetes and gay support.”  or “Diabetes and complications at an early age” finds your website and reads your blog from cover to cover as I did.

What part of Australia are you living in, Leith?

 I live in Mt Gambier, located in South Australia. It’s a gorgeous little place, ideal for “starting afresh.”

I really don’t know where to begin, as there are so many issues to address!

“Tell me about it! Know any Oscar -winning screenplay writers?”

Can you describe what happened in the period of time surrounding your diagnosis?

I was attending a state school in South Australia, and I was always the loudest in the class, and I always had the other kids in hysterics. Life was wonderful then… I always had an eye for fashion and dressing the girls’ up and tizzying their hair. Looking back on it, even though I had a girly voice, looked like a girl, laughed like a girl, I thought that when “the change” came, (that being puberty,) that some miracle would  occur and make me “a man”, just like my Dad. 

Then, one day, I realised that I had the most unbearable itchy private parts. It got to the point that I didn’t care if people saw me scratching furiously. I would race home from school and dive into a freezing cold bathtub. That was the first telltale sign. Then, I would go to bed as soon as I’d have dinner, and sleep right through the night, and I often awoke lying in a sticky, cold puddle. I couldn’t work out why I had started wetting the bed again. Mum was sure that it was something to do with hormones, but she took me to the doctor anyway. He was just as hopeless as Mum. He said that I was suffering from symptoms of stress, as I had lost almost 8 kilograms very quickly. Yet I was chugging back coke and water, litre after litre. It was all so mysterious to me at the time. Then one day, Dad wanted my help to pick up leaves. I said that I couldn’t get out of bed. He yelled again, and then came storming into the bedroom.  I must have looked crook, because as soon as he laid his eyes upon me, he yelled out to Mum that we needed to get me to the doctor straight away. I  had some blood tests done, and the hospital staff soon had me in Intensive Care, Mum and Dad were looking on anxiously and my siblings were outside, crying their little hearts out. They were scared that they were going to catch “it” too. A paediatrician came and sat on the bed and told me that I had Juvenile Diabetes, as it was known in the day. I didn’t cry, but I was saddened at how distraught my family were. As soon as I had insulin, I felt better within an hour.

I have seen children develop diabetes at the last stages of childhood. Were you angry that you had no say or choice anymore in regards to this new, regimented lifestyle?

I was actually. I was horrid to my parents and my family. I used to lie to my parents and tell them that I had had my insulin, and then get up in the middle of the night and stuff my face with food. I ended up in a coma when I was 13 as I had led my folks to bellieve that I had everything under control. I just didn’t wake up one morning, simple as that. I was dealing with other feelings at that stage, I knew that I was attracted to other boys, and I also knew that there was nothing that I could do to stop it. Believe me, I tried everything to make myself straight! It was so easy to not care about my diabetes at that stage, ot wotty about how sick I felt, because I felt so horrible within myself that I didn’t care about diabetes or the repercussions of not taking insulin or gorging on midnight feasts!

You revealed your sexuality at a very young age to your parents! How did they react?

After Mass one Sunday, I told Mum and Dad and the kids that I needed to announce something. They all sat around the kitchen table, their eyes fixed upon me. I remember saying, “I’m not normal.” Mum came fussing over and looked me in the eye and said “Diabetes does not mean that you are not normal, Leith!!” I said, “Yeah, I know Mum, you didn’t let me finish…I have a crush on Mr Taylor at school, and I dream about spending my life with a man.” My brothers and sisters all laughed themselves silly, Mum clutched her quivering chin, and Dad had his arms folded across his chest, like he was trying to keep his heart from jumping out of his ribcage. He looked distantly out the window, and said nothing. Mum said, ” I think we better check your level..” I let her do it, just to prove that my blood sugar was ok. Dad whacked his fist down on the table, and demanded that the others’ stop laughing. He sent them all outside, and he said to me, ” How can you possibly say such a thing? You’re only 13 years old!!!” I told him that I had always known that I was “different” than other boys my age, that I always had little crushes on soccer coaches and teachers and priests. He got up off his chair and said “Well ,no bloody wonder Satan punished you by giving you this wretched disease. Do you know what it has done to your Mother and me? And now you go and do this to us? Get outside. I can’t stand to look at you. You ungrateful little bastard!”  I walked over to the door, Mum was on her hands and knees, crying, trying to stop me. She kept on saying, “It’s just a stage…it’s just a stage….”I  broke free of her grip and went and climbed a tree and watched how they all reacted. From then on, it was like my parents had three children, not four. I was the “oh..and Leith.” 

You were severely bashed and assaulted a few weeks after you came out to your family. Do you remember what provoked the attack and what happened after?

I had 6 broken ribs, a broken coxyx, internal bleeding, and a perferated spleen, as well as horrendous facial injuries. All I remember is walking home from school, and some young apprentices (16-17 years old) who worked at a garage in town called out “Poofter..go home!” to me. I ignored them but their tone was serious enough that I quickened my pace. They kept yelling out, and trying their hardest to get me to turn around and react. Next thing I could hear approaching footsteps running towards me. I felt a blow to the back of my knees, which made me fall to the ground instantly. Then I was helpless. I couldn’t protect or defend myself. I lay on the ground and prayed to the God who everyone said now despised me. I waited until it was over, and the brutes had skulked away, and I went into immense shock. It took 30 minutes for somebody to bother to call the ambulance, despite the attack occurring in the main street. My blood sugar had dropped so low, that I fell unconscious on the ride to the hospital. Firstly, the community knew me as “The Boy With Sugar,” and now I was known as “The Devil’s Spawn.” Fortunately, somebody recognised or remembered that I was diabetic, and I was rushed to emergency and put on a drip, and then underwent surgery as my spleen had ruptured. My parents were called, and told that I had been in a “scuff”, and that I had a few broken ribs. Mum came to the hospital and was told that she couldn’t see me as I had just came out of theatre. She had no idea about the seriousness of my injuries. Charges were never pressed.

I am struggling with anger and tears, Leith. You were 13! Only 6 years older than Lance!! How was your recovery?

When I was first released from hospital, I was given my medications and my mother formally discharged me. She drove me home and I was welcomed home by my siblings, (all who were forbidden to see me, despite being in hospital for 3 weeks,) and I saw my father look up from his paper as I clambered out of the car. I was very weak and was in agony from the pain of broken bones that could not be plastered. I had internal bruising also, so it was only for my mother that I could force a smile. She nursed me back to health, a Christmas passed, and then my 14th birthday. I didn’t leave the house except for specialist appointments. One day when I was feeling like I just might be on the road to recovery, Mum came into my room with a pile of suitcases.

Is this is when your parents organised your immediate departure from your home town, and your enrollment in an All Boys Catholic Boarding School in Adelaide- approximately six hours away?

Yep. Mum had name tags sewn into all of my clothes, and had a suitcase dedicated entirely to my new school uniforms, still encased in plastic. She told me that I wasn’t to make a fuss, and that it was for the best for everyone. She packed a notebook, pens and stamps and told me to write to her when I could, and “that it would be for the best if I left my name off the back of the envelope.” I tearfully nodded, and was given four hours to pack any things that had significant importance to me. I took a photo that was taken before I “destroyed ” the family . Despite their feelings of revulsion, they were always so very important to me.

Day 1-Boarding School. Did “they” know everything about your hospital stay?

Yeah. I had a housefather come and sit me down on the bed for a chat. He told me that I could go to the sick bay whenever I needed for pain relief. I was astounded that my parents’ had neglected to tell them that I had been a Type 1 Diabetic for six years. The staff had no idea. Luckily, I looked after myself when it came to my blood sugar, but since the attack, I didn’t test nearly as much as I used to. I had grown used to feeling hyperglycaemic, and landed myself in hospital after my first week at boarding school with DKA. I just stopped giving myself injections. I was in a daze. I was used to being in a school with Grades 5, 6 and 7 intergrated, and I had been thrown headfirst into this new world, with kids’ that seemed like they came from another planet. Diabetes became the last thing I thought of. I was still in a reasonable amount of pain, and adjusting to the fact that I had to shower with the people in my dormitory-it was totally acceptable to be naked in front of my housebrothers, something that my parents were totally against. I was in hospital for 4 days, when an endo came and spoke with me. He told me that my Diabetes was in very bad shape. I had a HBA1C of 12%, and I hadn’t adjusted my insulin dosages since I was diagnosed. He was appalled that I was under the impression that I thought it was ok to give myself insulin when I felt like it. He was the first person who made me realise that I had to take care of myself, otherwise I could face serious consequences in the future, or die from lack of insulin as a 14 year old. It was a very big realisation for me.

Did you keep your diabetes on the down side?

My House father used to keep a bottle of jelly snakes besides his bed in case I ‘went funny’ in the night. Not one other person in the school had Type 1 Diabetes. I was the only one-so I decided that I would keep it to myself, along with the school Nurse and the boarding staff. They did make a conscious effort to look out for me. When I was in hospital with DKA, I was put on a different insulin, and a new dosage. I was constantly ravenous. I couldn’t stop thinking about food…my pockets were lined with lollies, and I dreamed of cream buns and stodgy boarding school meals; at least they filled me up! I now knew the horror of frequent hypoglycaemia, it was an experience that I wasn’t used to. I used to wake in the night with the linen soaked, and my hair matted to my forehead. I could never work out where I was, or what to say, so I just used to open my mouth until I heard a sound loud enough to wake people up. The brain is useless during a severe hypo! My House Father would sit with me and give me cordial and lollies until I would collapse with exhaustion and a pounding headache.

Did you enjoy any part of boarding school?

I wasn’t popular by any means. I was always the last to be chosen on teams, and I seemed invisible in my classes. I actually had an aptitude for cooking, and the Home Economics teacher boosted my confidence considerably by praising my Devil’s Food Cakes and my Beef Stroganoff. However, my blood sugar was constantly plaguing me, everytime I felt like I was maybe enjoying myself, I would feel myself starting to slip into hypoglycaemia. The school nurse knew NOTHING. She didn’t know how to help me in the least. She did do something useful one day and got me an appointment with a GP. I told him about what was happening, and he told me that I wasn’t eating enough. At this point, I was a normal, healthy weight for my age. Three months later, I had gained 15 kgs. That doctor really knew what he was talking about. The hypos had stopped, and the cooking that I was reknowned for and that I would once share with my fellow dorm mates, I would sit in the Home Economics room and devour a meal for 12 by myself. I spent any money that my Mother sent me on chocolate or treats. It wasn’t long before I couldn’t do up my school trousers. I couldn’t button up my shirts. I had more chins than a Chinese phonebook. I had love handles, and back fat. My House Father kindly contacted my parents and told them that I had just gone through a massive “growth spurt” and that the school would be sending them an account for new uniforms. I was a walking butterball. I wasn’t ignored anymore either. I was the brunt of fat jokes. I would be exhausted from walking from class to class. Again, I ended up in hospital with DKA, as my blood sugar was so high. This time, I was in a coma for 4 days. My parents were called, but they didn’t make the trip. My House Father would sit with me whenever he had a chance. The entire school prayed for my recovery. Thanks to the DKA, and 4 days of fluids, I managed to shift a lot of weight. I had just turned 15, and suddenly, I realised that I liked the way I looked without my Sara Lee rolls. However, my love of food had me constantly in battle with myself. I wanted to look thin, but I wanted every crumb of a family sized Caramel Tart. Unfortunately, I couldn’t have it both ways…My weight and blood sugar fluctuated, as did my moods, my grades and my energy levels. That’s when I discovered the cheats’ way out.

This is when you began binge eating/purging?

Yes..I had no one whispering in my ear telling me sly little tips either. I managed to keep “my secret” for four years. I acknowledge now that I went through periods where I starved myself too. So you could probably include anorexic tendencies in that list also. Even after my diagnosis, the assault, getting kicked out of home, and accepting my sexuality, I could still have people in fits of laughter with one sentence. I felt like I was a survivor, and that I was mentally strong. However, after I had the mammoth weight gain, and I began coming up with any excuse to rush to the bathroom to cleanse myself of food, I felt like I was an empty, worthless person. I felt like I was a failure to my parents, to the people who had invested time into my wellbeing, and mostly to myself. I remember enthusiastically volunteering to help the Baker unload his truck every second day. Besides hundeds of loaves, he had iced finger buns, meat pies, sausage rolls…I was truly happy as long as I had my mouth wrapped around something disgustingly unhealthy. It numbed the inner turmoil. However, as soon as the last bite was injested, I was overcome with repulsion and disgust. I learnt to purge on command, I didn’t need to use my fingers anymore. I always carried breath mints with me, and I had perfected the art of avoiding vomit splatter. I was a fantastic bulimic. I never felt suicidal, but I felt tremendous relief by cutting myself with a razor blade. I used to use to flesh on my thigh, so as not to be exposed. It is impossible to explain to someone why I did it, it just seemed symbolic..like I was ‘releasing’ all of the pain I carried around with me. The problem was, I started to want to do it more, and more.

When did you hit rock bottom?

It became evident to the School and to me that my family had slowly phased me out..even Mum had stopped writing now. The school fees were always paid, but I always spent the school holidays with one of the the priests. Everyone at school had worked out for themselves that I was gay. I looked gay, I walked gay, everything about me screamed gay. It wasn’t such a big issue as their was other boys that I knew were “in the closet” that I had grown to form friendships with, however the boys from rich families in the city would empty my locker and hide my books, hide my sports clothes and replace them with girls’ clothes, and mouth degrading, filthy words whenever no one was watching. At that point, I didn’t care. I had bigger secrets to keep. I remember after a huge bakery binge, I walked into class late. I apologised to the teacher and took my place. One boy said , “Awww, GEEZ man, you have the most disgusting stench coming off you..” The class laughed, the teacher gave me a concerned look and I hurriedly got my books open and pens ready. Throughout the class, people would sniff loudly, and pull their jumpers up over their heads. Cracks were beginning to show. My teeth were also discoloured from all of the gastric acid that had corroded them over the years. I had perfected the art of smiling so that my affected teeth weren’t so visible. I actually had buckets of vomit hidden in my closet, that I would dispose of when everyone was asleep. I went to such extreme lengths to protect my dirty little secret. Being gay and diabetic was child’s play compared with this… One morning I was told that I had an appointment with the endo. A taxi was waiting for me, so I hurriedly rushed off without checking that everything was “just so” before I left. I had blood tests done, and a chat to the endo, who asked me if I was experiencing any stress, as he commented on my weight loss and poor colour. I quickly shook my head and pushed the blame onto exam pressure. He looked suspicious, but didn’t say anything more. I returned to school, and attended my classes. As I took my seat during my last class, my House Father appeared at the door and asked if I could be excused from the lesson. We walked silently to my dormitory. I knew I had been exposed. He had found my stash of lolly wrappers, empty soft drink bottles, piles of stained clothes in garbage bags, food diaries that I wrote how much input/output I had for each day…and an unemptied bucket. I was so ashamed. He made me stand on the scales-I was 60 kg and 5 ft 11 inches tall. I was positively skeletal. I had that covered too, by wearing layers of bulky clothing. I was numb. Tears ran down my House Father’s face, and he began to pray. I wondered what was going to happen to me. He told me that my parents had been called, and that I would be spending time in a “hospital” for a “rest.”  I saw my family for the first time in almost 4 years, they looked at me like I was a stranger. Even Mum seemed icy towards me. I took my place in the “family” station wagon and was driven to a Psychiatric and Rehabilitation Hospital. My father carried my luggage in and filled in the paperwork. He walked away, and turned back. His last words to me were “Well. You’ve ruined our family again. The shame you have cast upon us…the shame.” I sat on the floor and cried four years worth of tears.

Keeping in mind, that you had been through so much and yet you were only 17 years old, it seems like diabetes always came last in your list of priorities. What eventuated when you finally received proper medical attention for the first time in nine years?

I was in a room that was beside the nurses’ station. It had a window with a venetian blind. I would see a different set of eyes peek through every thirty minutes. I had blood taken, and was introduced to my psychiatrist, and an endocrinologist from a hospital in Adelaide. I was put on medication that kept me planted in bed. All I did was eat my meals (carefully prepared by a dietician), shower, and sleep. I could sleep for almost 36 hours. It was like my body was catching up on all the stressful situations I had put it under. When I came off the medication, I had a visit from the endo. He was kind, and empathetic. He told me that I had caused a lot of damage to my digestive tract from years of stomach acid eroding it away. He told me that despite my low body weight, I had horrendously high blood pressure. He handed me a mirror, and showed me my teeth, and pointed out the gingivitis that left my gums scarlet and swollen. I had to have 6 teeth extracted as they were rotten to the core. He said that they had to come out, as I had absesses on them, and that any infection was potentially dangerous being a diabetic. He told me that I was severely anaemic. He told me that my cholesterol levels were also abnormal. He showed me the scars on my leg, now healed and clean, but still a reminder of painful times.The biggest kick was that I was excreting protein in my urine. From years of blatant neglect, one kidney was larger than the other, and was only working 75% of its capacity. I was monitored closely, and had nursing staff administer my insulin for me, morning and night. I had staff watch me eat my meals, morning, noon and night. I underwent counselling about my sexuality, and the torture that I had put my body through, 3 times a week. After 6 months, I was 78 kilograms. I felt spritely and full of energy. I had no urge to harm myself. My gums were a natural, fleshy pink colour. My iron levels were normal. I felt assured about who I was. I knew that I was a gay man. I accepted that I was estranged from my family. I went to live with a retired priest and finished my last 6 months of Grade 11 by correspondence. Finally, there were no more dirty little secrets. I had made a commitment to myself to look after my diabetes, too. Being in hopsital made me realise just how much I had endangered my health.

So, who are you now, Leith? Are you happy?

Yes, I am very happy! I am 26 years old, and still have my battle scars from those days. They remind me of how far I have come. I finished Grade 12 eventually, and entered the hospitality industry. I now own a successful Bed and Breakfast with my partner, Davon. I have made contact with my siblings-we see each other frequently. Sadly, Mum passed away, and Dad lives alone, full of anger and hatred, and ironically enough, was diagnosed with Type 2 Diabetes 3 years ago. He recently started on insulin. I send him a card for his birthday and Father’s Day, but they are returned to me unopened. It doesn’t stop me doing it though. It seems like a lifetime ago since I was at boarding school…I still see a therapist, and I am well aware that I can still relapse at any time. I try to keep things as consistent as possible in my life. I still have dreadful blood pressure, and I started on an insulin pump last year, which has taken so much of the hard work out of Diabetes. For today, I am happy and grateful that I made it through some awful times. I think it is really important to realise that just because you have Diabetes, it doesn’t make you immune to having issues with your body. I encourage all parents to speak openly and frankly with their children when puberty arises. Diabetes can be very difficult to tolerate when there is so much else going on in your body. The desire to be perfect equates to being “thin” these days. Thin means popular, successful and beautiful to impressionable teenagers. A few extra kilos renders you in the “loser” category. I am starting Uni next year and I plan to become a social worker. If  I can help one person escape years of self loathing like the ones I threw away, then I’ll feel like I’m finally at peace.

~~~~~~~~~~ 

Lately, I have had a glut of phone calls from people who know a family that are dealing with Type 1 Diabetes diagnosis, and for some reason, they end up with my details.

JDRF Australia estimate that there are 5 new cases of Type 1 Diabetes diagnosed everyday.

In the past weeks, I have spoken to mothers who have not slept more than an hour for two weeks straight, fathers’ who have had to pick up the pieces and continue running the household, and big sisters who are suffering in school because they are falling asleep in class from lack of sleep.

When Diabetes invades, it gives no warning, and it’s just like everything you have been doing for the past years with your family has to stop, and a new plan and system has to be installed to accommodate everybody.

I wanted to make a list for people who have just had a young child diagnosed, and who have been too overwhelmed with hospitals, doctors, drips and diets to fully grasp what they are going to come home to. I have tried to include some of the more challenging situations as well, as it’s always reassuring to learn that someone else has been through it before you!

Here it is..my very extended version of how to deal with some feelings and situations that often go unspoken.

*Obviously, your child will have been very ill before you were told to rush to the hospital. You may have washing to catch up on, general cleaning.. It is a fantastic idea (rather than flowers or gifts) if your family can join together to hire a cleaner, so that you at least can exist in a clean environment, without the everyday burden of housework.

*When your child is finally discharged from the hospital, it is a very overwhelming experience to walk into your home-pre diabetes. Diabetes Educators and nurses are encouraged to have the family involved as much and as soon as possible with finger pricking, giving injections, and taking care of your child, just as you would as if you were at home. The constant visits from your Diabetes Care Team and family often distract you enough that you haven’t even come to terms with the fact that your child has been diagnosed with a chronic illness. As soon as you can, make an appointment with your GP, as you will no doubt be in severe shock, and only just beginning the grieving process. Your GP can offer you lists of Support Groups in your area, Diabetes Educators, Counsellors. If you have more than one child, it really is imperative that the main care giver (at least) is able to vent and learn some coping mechanisms with this new full time responsibility.

*All hospitals in Australia ensure that a newly diagnosed patient visits or contacts Diabetes Australia in their state, and becomes a member of the National Diabetes Services Scheme. The NDSS will provide huge discounts of your everyday requirements, such as test strips, ketone strips, and syringes or needle ends for insulin pens. Often, major diabetes drug companies will give families a glucometer at no charge-obviously, you weren’t budgeting for all of this new equipment. (We are so lucky living in Australia, test strips are often no more that $1 for a pack of 100, and syringes and needle ends are free to those with a NDSS card. You will receive a card whilst at Diabetes Australia, or with your order.) When you arrive back at the hospital with bags full of new and foreign items, a diabetes educator will sit down with you and run through how to load an lancet device, or how to get a glucometer ready and waiting whilst you get a sample of blood to test. Ask as many questions as you need to- that’s what they are there for.

*Most endocrinologists who are looking after your child’s insulin requirements will offer their mobile number or a private number, so that you can administer insulin doses yourself, whilst still knowing that your child will most likely be safe under the endocrinologist’s orders. NEVER FEEL AFRAID OR LIKE YOU ARE GOING TO WAKE UP THE DOCTOR: the endos often take it in turns week by week to answer the phone-they are well versed and non plussed regarding a panicked query at 2am with a 2.3mmol/L reading. It is much better to call the doctor, than to rush back to the to the hospital and put your child (and you) through more trauma.

* Your endocrinologist will be able to fill out a form for you called a Treating Doctor’s Report. You will have to fill in one too, and upon returning them to Centrelink, you are entitled to the Carer’s Allowance, which assists people with high maintenance Chronic illnesses-like Type 1 Diabetes- with medications, healthier choices at the supermarket, and emergency after-hour doctor fees.

*Were you not told about about a product called GLUCAGON whilst in hospital? If the answer is no, make an appointment the very next day so that you can get a script from your doctor. Most children are in the Honeymoon Period when they are diagnosed, so the risk of a severe hypoglycaemic attack is quite rare. However, they do happen, and the Honeymoon Period will eventually pass-whether it be days or months after commencing Insulin Therapy. You need to ensure that you have the “orange plastic box” with a prefilled syringe of sterile water and a vial of powder inside. There are clear and concise instructions inside the lid of the box, and also paperwork with detailed information included in the box. You will need to have this product with you, wherever you go, or somewhere safe and accessible in the house. IT HAS SAVED MY SON’S LIFE ON MORE THAN ONE OCCASION.

*Store all of your insulin away in the fridge as soon as possible. The vials or pens that you will be using on a daily basis should live in a cool area, preferably inside a dark coloured, plastic snaplock box. Find a good place where every member of the family can reach the insulin,glucometer, test strips and lancets, and it’s really helpful to keep it all together in one larger clear box with a lid. Insulin not being stored in the fridge has an effective life of 30 days. Any longer, and it is very obvious that the insulin has lost its strength, as you will have high numbers bouncing all over the place.

*You will need to learn to travel everywhere with a hypokit, either in a backpack, or in the case of a Mum with a young baby, you will need a huge nappybag with lots of zips and pockets. A hypokit should contain: A Glucagon Kit, ample jellybabies or jellybeans, fruit juice in a box with a bendy straw, some plain biscuits and muesli bars to give your child after you have treated their hypo, a sachet of sugar, honey and jam, (in case you have to rub into the cheeks of a baby who is hypo and screaming,) an identification card with your child’s photo and name and your contact details, clearly stating that the child has TYPE 1 DIABETES. Your endo, GP, educator and spouses details are handy to have speed-dialled into your mobile phone in emergencies.

* You will have to have hypokits around the home, too. Even if it’s a jar of jellybabies on top of the pantry, or a shelf in the pantry devoted to treating low blood sugar, that everybody in the household knows is exclusively for hypoglycaemic emergencies.

* You will need to find a suitable bracelet or necklace and get your child’s name, contacts and condition engraved into it. There is a fantastic Australian organisation called diabetes-ezy who have really modern, funky designs,(especially for young boys!!) rather than the clunky, unflattering Medic Alert handcuffs of ten years ago.

* When your child is first diagnosed, and commences insulin therapy, it is a really, horrible and stressful time, as blood sugar levels can fluctuate from 2mmol/L to 30mmol/L within an hour-even when little food is consumed. It’s a lifesaver to buy a cheap exercise book, and make notes about what was happening when a hypo/hyper occurred, if there was any outside stress, illness, excess energy expenditure, too many carbohydrates or too much/not enough insulin given. Eventually, you can start to piece together the puzzle and work out the warning signs of a potential emergency, and learn about your child and their Diabetes. (It does seem impossible at first, but speaking from the hugest Doubting Thomas there is, eventually,a bright, shiny lightbulb will appear above your head.)

* It is particularly annoying having to write down every finger prick result. A lot of logbooks designed for recording blood sugar readings never have enough room, and end up in a huge, confusing mess.  Again, an exercise book with a pen attached is initially handy to record the number on, then, at the end of the day, you can record ALL of your child’s results into a program such as www.sugarstats.com . You can then print out the results every 3 months to give to your endo.

* There is no denying it..Diabetes causes strain or stress even in the strongest of relationships/marriages. Don’t let Diabetes take over the family..it is so easy to say this now of course, but back when Lance was diagnosed, all I did was watch him breathe, read every book from the library about Diabetes, collate numbers and averages for the week, sit in bewilderment asking myself over and over again why this could have happened….I can see myself cramming as much information as I could into my head, and my marriage slipping away everyday without me even noticing. Find time to talk to one another, even if you are so exhausted that you can barely think, even 15 minutes of strictly non-diabetes talk can do wonders. It’s still important for your partner to feel as though he/she means exactly the same to you before the diagnosis. If anything, they are more important now than ever before! It’s just so incredibly important to TALK.( And drop the D word for a few minutes each day.)

* It’s vital that if your child needs to see an emergency doctor/pharmacy/dentist that they are informed promptly about your child’s condition. It basically has to sound like this. “Hi, this is my son, he is 7 and he has had Type 1 Diabetes for 5-and-a-half-years. He has regular insulin injections.”

* I have always made people very aware of Lance’s condition. I feel that no matter what age of the child, that it is really important that people know that your child has diabetes. Your child will feed off your confidence, too. (It’s almost at the point where I think Lance is proud of his Diabetes, as he will often engage in conversation with complete strangers and tell them about his adventures living with the Beast.) In older children, who remember a world without Diabetes, it can be more difficult, but in all seriousness, you are protecting your child by educating them to be proud and say “I have Type 1 Diabetes.” It could even one day save their life.

* Many parents ask me, ” I am never going to have my life back again, am I? or “When will I start to accept that this isn’t going to go away?” The good news is that you will most certainly have your life back again. It is often helpful to look at Type 1 Diabetes as a new lifestyle, more than a potentially life-threatening chronic condition. You do what you always did before the diagnosis, and ensure that your child receives their snacks, meals, insulin, exercise-along with lots of love, hugs and Mum/Dad-time. Naturally, your garden may have a few more weeds, or you mightn’t have your floor mopped until it sparkles everyday, but you do what is important first, and ensure that your family realises that they have extra responsibilities now. The other question is a tricky one. Recently, after almost 6 years of living this regimented life, I got really angry, and I was furious that I wasn’t “allowed” to have a minute away from Diabetes. There is no holiday. There is no weekend off. Diabetes Burnout is totally normal and very common, and can re-occur at any stage of being a carer. You aren’t a bad parent for wanting you old life back. You aren’t a weak person for feeling guilty that your child has your genes. You aren’t a terrible person for wanting to scream everytime you get a horrorshow reading on the glucometer. However, after a while, when levels start to become more regular, and life begins to develop a familiar pattern again, the hypos will settle down, and the nasty surprises become a rarity, you can suddenly recognise that “WOW! I have some control back!” Unfortunately, it does take time, and it takes a lot of work. With support, and there is SO much available, you can get through the sticky patches and get back on track again.

* Your child may be very anxious about resuming school, after being diagnosed with Type 1 Diabetes. Ask your paediatrician if he/she will come along to your child’s class,(most are very obliging,) and explain how sick your child was, and give an age-appropriate explanation of what Diabetes is. They will make sure that the teacher is thoroughly aware of looking out for symptoms of hyperglycaemia or hypoglycaemia-as will you! Parents often fret more than than the child about returning to school with Diabetes! In fact, many children are very interested to learn about Diabetes or witness a hypo or a fingerprick! A child with Diabetes almost receives hero status for being so brave to have to stick needles into themselves all day long. It is a responsible thing to do to write a letter to the parents of your child’s classmates, and really drive home the point that “Lance had no control over developing diabetes, in fact there was nothing anybody could do to stop it from occurring.” At 5 years of age, Lance was the unfortunate victim of being the only child in his preschool class to be un-invited to his best friends birthday party. When confronted, the parents admitted that they were too wary to ask me about what to do about cake, soft drinks etc, or if the party was ruined should an ambulance be called. Inform parents that you are going to be with your child at events such as birthdays,sports days, get-togethers,  and that you will be constantly monitoring their levels-insulin-activity ratio. A birthday is a reason to get down and funky with some serious birthday cake; there is NO reason for your child to miss out. Chances are that they have been so busy enjoying themselves that they actually needed some carbohydrates anyway, and even if they are at the higher end of “normal,” I can assure you they will not mind in the least at receiving a unit or two extra of insulin!

* It’s a positive move to use words and phrases like..”Lance had a hypo today, didn’t you sweetheart? We worked as a team to get you feeling well quickly though, and we had you safe again very quickly.” rather than “Oh God..Lance had a serious hypoglycaemic attack-it was a really bad episode.” Same deal applies for “Lance is a little high today, we’ll just have to keep a very close eye on him today, lots of water and maybe some jumps on the trampoline, buddy?” rather than “Get the ketone sticks, get him to pee on a stick everytime he goes to the toilet, his blood sugar is through the roof! This has been a really bad hyper-I wonder what he/we did wrong?” Kids actually do panic when they hear their parents speak even in hushed tones about serious issues. Stress is only going to accentuate the situation. Try to remain as calm as you can and re-inforce that your child is going to be fine. Let them know that you have everything needed to get their blood sugar level back to a safe range again, and that they just have to take it easy and relax. “Your level is bad/good” should be replaced with “Your level is high/normal/low.”

* The best thing that ever happened out of Lance’s diagnosis was discovering the amazing, inspirational team of people who devote their lives to working for the Juvenile Diabetes Research Foundation. (JDRF Australia.) Lance has had so many incredible experiences as a result of being a Youth Ambassador. He has met with politicians, and even travelled to Parliament House in Canberra. In fact, after this Jelly Baby Month, Lance and I have raised $6000-funds that go directly towards finding a cure. JDRF have a fantastic website, and bi monthly magazines that come out with the latest news regarding the hunt for a cure. Lance has featured in national and international publications, and he has become a well known face in our city. JDRF provide kids with Type 1 Diabetes with the tools to become powerful public speakers, they have enhanced confidence and strive for the best life they can live. Contacting this organisation is possibly the very best thing you can do for your child. It costs very little to become a member, and the benefits received are priceless.

* This is still an issue that I have great problems dealing with. For the first 5 years after diagnosis, I had huge anxiety attacks about leaving Lance with someone who doesn’t have “the trained eye.” By joining a local support group, you are going to meet other parents who know your situation only too well. Often, if it is a couple’s wedding anniversary or there is another important event that is not child friendly on the calendar, other parents will be only too happy to watch your child for a few hours. Of course you are going to be a nervous wreck, and be sneaking off to make check-up calls, but at least you made it out the door without a glucometer in your handbag! Often a family member who has gathered the major concepts of the too low-give sugar, too high-give water and “call me ASAP!” are great standbys also. The first time I left Lance with others, I had to end up coming home, because I was so distressed and distracted, but I have since learnt that he would be horrified to see me bursting through the door if he knew I was supposed to be out enjoying myself with friends!

Also, words like “amputation, kidney failure, heart disease, blindness or coma” should definitely not be used in front of your young child as examples to explain the serious nature Type 1 Diabetes can be to those who aren’t “in the know.” Kids with Type 1 Diabetes often lose a big part of their childhood from going to appointments, having blood taken from them regularly, dealing with sick days, missing out on camps, not having a sleepover without you on the sofa bed in another bedroom, sitting out a soccer game because they are low… They really don’t need to know about any of these terms until they stumble across it themselves. They have quite enough to deal with as it is.

* There are times when your child is sick, or very vulnerable, and you mind trails off, wondering if or when complications are going to set in. A nurse told me only 24 hours after knowing that my son had Type 1 Diabetes, that at least I could be assured that I would have a “good 15 years left with him.” I returned to his cot and cried and sobbed, envisioning losing my son at 15 years of age. When the head nurse hurriedly appeared after learning that there was a mother in great distress, I was so paranoid and confused that I actually made her show me written evidence to prove that a child with Type 1 Diabetes can have a long, happy and adventurous life. I can understand now, that even in the six years since Lance was diagnosed, that there has been SO much progress made- there was a time where maybe that nurse was told to give parents of newly diagnosed babies such a ghastly “timeframe”. Nevertheless, I was informed the next day by the Head Nurse that she had been given a crash course of Type 1 Diabetes for the 21st Century!!!

*Whilst in hospital, most Diabetes Educators or nurses will ensure that you speak with a Dietician. Sometime before you arrive home, you are going to have to get someone to go to the supermarket and buy essentials. You will learn why carbohydrates will become your child’s new best friend, and all about the Glycemic Index. It won’t take long before you know what works well for your child and what to avoid. Some kids have huge fluctuations if they drink cow’s milk. Lance can eat 5 mandarins and his blood sugar will not budge. A perfect example of how each child and each case of Diabetes is different.

*I am often asked what changes I have had to make to Lance’s diet since he was diagnosed. As an example, (and as as he has become a robust, ravenous 7-and-a-half year old, who is going through a MAJOR growth spurt,) I have listed what he has eaten today.

A nutritious example of a diet complete with calcium, 2 pieces of fruit, 5 servings of vegetables, and plenty of wholegrains for Lance would be:

Breakfast (after finger prick and insulin dose)

A serve of rolled oats (oatmeal for our American friends), a watered down glass of Apple Juice, and an apple cut into segments.(skin on.)

Morning Tea: 10 grapes, 2 plain biscuits and a tumbler of water

Lunch: 2 slices of grainy thick bread, with pizza vegetables and grated cheese and grilled with fresh herbs, a glass of milk.

Afternoon Tea: Slice of Gluten Free Apple and Walnut Tea Cake, glass of apple and pear juice.

Dinner: A serve of protein as big as the palm of my hand..(chicken breast, white fish, lean steak) accompanied by roasted starchy herbed vegetables eg potatoes, pumpkin, sweet potato, carrots, corn…and/or steamed green beans, broccoli. A Tub of yoghurt for dessert or home made Apple Crumble.

Supper: Water Crackers, cheese cubes, sultanas and 1 square of chocolate.

As you can see, there is a LOT of food consumed throughout the day! You will quickly learn that apple juice instead of orange juice will keep your child’s blood sugar from soaring to 12mmol/L and more likely keep it at 7/8 mmol/L and for a longer period of time. It’s really important for your child to go to bed with a blood sugar level of no lower than 7mmol/L. I am happy if Lance is 7.5mmol/L just before he closes his eyes. Night hypos or “Nypos” are frightening and horrible, not to mention dangerous and even life threatening. I have had people question giving Lance a square of chocolate before bed… Chocolate actually has a low to moderate count on the Glycemic Index, and it is great to be able to reward him for taking such good care of his body all day long! I can’t emphasise how important it is to give your child supper before bed, even if they did a great job with their evening meal.

* At my first formal Diabetes “class”, we were all told about how people with Diabetes will take longer to heal regarding skin abrasions/illnesses. Lance actually sneezed during that session. Everybody looked at me like I was supposed to instantly whip out disposable paper face masks… Sure enough, later that evening, Lance’s BSL was HI and his temperature was through the roof. He was coughing and crying and I sat down beside his cot and imagined that it was going to take 6 months for him to heal from a cold. He had fully recovered in 4 days. If he falls and grazes his hand, some extra care with some antiseptic lotion and he has gorgeous new pink skin a few days later. Diabetes is often about making smart(er) choices, and taking extra care. Most issues can be dealt with just like a person without Type 1 Diabetes if you use common sense and stay aware and alert.

*My hugest fear as a parent and carer of a child who has Type 1 Diabetes….Gastro Viruses. Ohhhh… I am already out in a cold sweat just thinking about it. Here’s the deal. If you child is a toddler or very young, and suddenly sends a huge cylinder of vomit flying through the air, everything is going to change from that moment on. You are going to have to have your glucometer strapped to you, and wait for whatever the last insulin dose you gave to wear off. Expect a hypo-strong words, I know, but it’s reality. After being sick, little kids, and sometimes even older children are not going to want anything going near their mouthes. Panadol, ice, glucose tablets will all get thrown back at you. They are naturally afraid of such a repugnant reaction to happen again-so they will not eat, even if you cry, beg, plead. If you are on an insulin pump, the Gastro Bug isn’t as scary. However, if you are doing it old school via insulin pens or syringes, you are going to have to contact a member of your Diabetes support network to help you work out how much insulin to give. Even though your child is sick and not eating, INSULIN MUST STILL BE GIVEN. You just have to give less of it, more frequently. If you start getting high readings, and your child is hot and crying, press a ketone strip into their nappy, or if they are old enough, explain how to use them. If you see colour changes in the ketone line, you need to go to hospital immediately. Diabetic Ketone Acidosis (DKA) is a life threatening illness that occurs when the body starts to self-cannibalize itself, as a result of not enough insulin. Your baby will have to go on a drip, to ensure that they do not dehydrate, and most kids recover pretty quickly when a vomiting retardant such as Maxolon is given through the drip. However, be prepared for psychological issues for a few days. Some kids are scared to eat again in fear of repeated episodes of vomiting. Start with baby steps-ice chips are great. If they are happy with those, you can move up to Lucozade ice chips. Then sips of lemonade, or a piece of toast…eventually they will gain their confidence back. My family are all nurses, and love to tell me about how their is wards full of people in hospital with stomach viruses that are unshakable for 2 weeks….I tried to be a superhero once, and sit through a week of crying, fingerpricking, irrational behaviour, triple the amount of washing to do, checking temperatures, giving hourly insulin…it’s just a nightmare. I know now, that if it’s going to happen, and there isn’t any signs of recovery within 24 hours..off to hospital we go.

*On that note, it is really great to teach your child to learn to become a vigilant hand-washer. Without encouraging obsessive compulsive behaviour, it’s good to get your child to wash their hands before they eat, have their own individual portions of food, wash their hands if they have patted the cat or the dog, and an antibacterial wipe over your child’s hands after being at the supermarket/doctor’s surgery/pharmacy can never hurt, either.

*Almost six years on, I have learnt so much..and I’m actually proud to say that I worked most of it out by myself. There is nothing more heartbreaking than jabbing a baby with needles, and sending yourself around the twist as you watch them breathe as they sleep. I got there. I have a child who stands almost up to my shoulders to prove it. He’s as strong as an ox and as healthy as a horse. Don’t forget to enjoy your baby, even if you have to deal with Type 1 Diabetes. They are only so little for such a short time..they are still perfect little blessings that need to be saturated with love and care. You will get there too! I already have a little man who smothers me with love and hugs. I guess, even throughout the thousands of needles and fingerpricks, he figured out that I love him unconditionally.

As a vulnerable 12 year old girl, I was curious as to why brazen girls in my class looked like cats who had guzzled the most delectable cream. A lust-driven, excited whisper soon reached me to get to the cinema-pronto-and get tickets for Dirty Dancing.

 Something happened to me that night.I emerged, equally as smitten and under the spell of a very tight, very chiselled,very taut,very gorgeous Patrick Swayze, who had effortessly transformed a Plain Jane into his dancing partner. As a result of their gyrations and dreamy stares, you could almost catch a whiff of the teenage pheromones in the cinema. We spent all our money buying posters of Patrick sans shirt, his fingers caressing his nipple. He was the ultimate movie star for a girl, not quite yet a woman.

Today, I woke to hear the news that he has been diagnosed with Pancreatic Cancer.

My heart sunk, as I recalled his pelvis grinding into his partner’s,( all in the name of dance,) the passion that he showed when he needed to fight for his girl, he possessed all of the qualities that turned me from a  girl into a highly inquisitive teenager who was seduced by his romantic, tearjerking roles.

Then, even as a late twenty-something, I noticed that he began to gain kudos in roles like Donnie Darko; he began to display that he actually had real acting chops. In the picture featured, he was at the premiere for his new release-however, at this stage, the world was oblivious  that he is terminally ill. We all know that he will literally have to pull off the biggest performance of his life to survive.

 He is still happily married and in love with his talented dancer wife, Lisa Niemi, who was “his girl”on the set of Dirty Dancing, all those years ago.

Cancer of the Pancreas is notorious as being one of the most painful, aggressive and devastating forms of this dreaded illness. It’s insidious nature stems from no available screening, and it isn’t until symptoms start to appear (sudden jaundice being the clincher)that the “5 Week” time frame is given.

He will have a hard and rocky road to climb, but hopefully, with the love and dedication of his wife, the support of his fans worldwide and the fact that his diagnosis was caught relatively early, he will pull through with the best specialists attending to him.

Don’t let this put you in the corner, Patrick.

However, in all seriousness, you played a huge part of my growth from a girl to a teenager, and I adored you with such fervour that I still remember your lines…your wardrobe..

Peace, Love, Courage and Strength to you and your lovely wife.

It was about 5.30pm and I was preparing a healthy wheat free, low fat, vitamin packed meal for Lance and me. (It was Gluten Free pasta with spinach and cheese sauce, with a medley of colourful vegetables to accompany.)

Lance was building a Space Station out of Lego, and whilst I chopped, diced and stirred, he twittered away about how there was a friendly alien talking to him.

 “Oh really? What colour lego did you use to make him?” I asked playfully.

“Oh no, he’s not an lego alien. Is Lego called Lego because the man who invented it had an alien with legs?”he enquired curiously, and seriously.

I dropped my kitchen utensils and grabbed a popper from the fridge. There was Lance, slumped over, with a rainbow of Lego pieces surrounding him. He heard me coming, and he slurred, “You didn’t answer me!” Immediate tears.

 I opened the juice and told him that I was putting the straw to his mouth. His hand snapped up and flung the box out of my hand, covering me with juice..(again!) and sighed, “I am so tired of  poppers, Mum.”

I wiped the dripping juice off my chin,( I am going to start wearing a raincoat from now on..) and asked him if he would have it because it would give him power to build the best alien ever. He reluctantly put the straw to his mouth and I gently squeezed the box, as I wasn’t sure if he was lucid enough to know he had to drink. However, he started to swallow, so I knew he was receiving it.

It was usless, he was unable to sit without falling and hurting himself. I lifted him up and laid him on the sofa, propped up with pillows. I gave him one of his ”flavour-of-the-week” raspberry glucose tablets whilst I rubbed his hand and talked him through how sucking the tablet would soon make him feel better.

I used this opportunity to do a test and remove a lego piece that was painfully embedded in my thigh.

Hmm..1.7mmol/L. How on earth did that happen?? He was 12.4mmol/L only 70 minutes ago.And he had eaten the best part of a wheat free scone with jam!

He reached out his hand, feeling around for the other half of the glucose tablet.

These glucose tablets from America are so fantastic. He enjoys the flavour so much that even when he his levels are lower than a snakes belly, he is still willing to eat them.

I could see the glassiness fading from his eyes. He asked for the juice.

In this photo, Lance is barely able to lift his head high enough to reach the straw of the juice-the juice that is saving his life. He has very little physical strength left as a sudden and severe hypo has left him weak and listless. His blood sugar level is currently 3.4mmol/L.

Diabetes can be so infuriating. It made no sense that Lance had this hypo. I do all that I can to compromise and cooperate with Diabetes, but it doesn’t always repay the favour. Lance had no warning signs, I was only able to detect he was in grave danger from one nonsensical reply he made to a question I had asked. Not only was our dinner ruined, the smoke alarm was alerting and Lance had high blood sugar, as his insulin dose was about to run out, and from the sudden rush of sugar he was forced to consume. After a hypo, he often feels nauseated and doesn’t want to eat. Therefore, he wasn’t able to eat until 8.30pm, I had to make dinner all over again, and calculate what insulin dosage would be safe for him to have to see him through the night. Diabetes can change the entire workings of a home, and ruin any plans you have made within seconds.

Insulin is not a cure.

Today, I transformed myself from Mum and Carer into Supersleuth extraordinare.

I am not easily shocked, but I have to admit, when I found out about some disturbing information from two very reliable sources, I decided to check it out before I drew any conclusions.

My findings have left me utterly disgusted.

Let me explain….

I have a great friend who works in Emergency/Triage at a hospital. He deals with pretty much everything from kids with high fevers to victims of horrible road accidents. I guess he’s pretty unshockable, too.

We caught up over New Year for a chat, and he started to tell me something, and then quickly withdrew the comment telling me that I didn’t want to know. I could tell by his body language that it was something that he had regretted starting to say.  Now, when someone does the old “Oh, never mind,” or “It doesn’t matter,” my curiosity (which is very active anyway) gets the better of me,  I beg, plead and grovel until I get my way.  Sometimes, it really doesn’t matter. or I shouldn’t have minded. However, my mate couldn’t look at me and his face and ears had turned a brilliant shade of scarlet.

I pestered and reasoned with him for about 10 minutes until he finally relented.

“Oh…this guy was rushed into emergency unconscious, and it turned out that his blood sugar was really low. We just gave him some glucagon and a sweet drink and then the registrar came to visit and inspect what was going on. This guy was absolutely huge,not overweight, but as strong as a tiger,he could have flattened me in one swipe. The muscles..even at the gym I’ve never seen anything like these muscles.”

I was impressed that a young guy with Type 1 Diabetes was apparently setting out to obtain a impressive physique. But there was more…

“Anyway, he was in a real hurry to discharge himself, and the doctor said that he wanted to keep his eye on him for a few hours and wait until he had eaten something substantial. The doc left the room, and I started getting his medication details. I asked him how long he had been diagnosed for, to which he replied, ”Four years.” Then I asked him what insulins he was taking, and he said the name of a rapid, to which I replied “and?” You have no idea how much he was squirming at this point. He then said in hushed tones,

‘I don’t have betes okay? I just use a bit of slin from time to time when I’ve got a comp on. Can I go now?’ 

“So it turns out that this guy is a professional body builder, and he injects fast acting insulin, and then crams himself like crazy with Mars Bars and sweets and as many carbs as he can. He has little bursts of insulin on a regular basis, and because it’s totally undetectable in a urine sample, it’s considered “the ‘perfect’ performance enhancing drug.”

I was actually shocked.

This is the theory responsible for how insulin has become the favourite underground performance enhancer.

• Insulin is used in bodybuilding to increase the bulk of muscles. Regular injections of short-acting insulin are combined with a high carbohydrate diet and this has two helpful effects.
• Firstly, the insulin works in the same way as it does in endurance athletes – increasing the volume of glycogen and leading to an increase in muscle bulk.
• The second effect is that it prevents the breakdown of muscle protein. This means more muscle is made than destroyed, thereby increasing the size of muscles.

My mate felt dreadful that he had told me, considering that insulin is 100% responsible for keeping Lance alive. I felt angry that such expensive treatment that is so heavily subsidised and accepted by the Australian Government as essential for the wellbeing an longevity of people with Type 1 Diabetes, is being used as the ‘perfect’ performance enhancer in the bodybuilding circuits.

Of 420 bodybuilders at one gym, each was asked if they were using insulin alone or with steroids. 10% admitted that they were.

The tragic irony amongst this incredibly dangerous practice, is that these muscle junkies, desperate to attain the uber body, are often diagnosed with Type 1 Diabetes later in life as a result of regular use, because the body’s own insulin production falters.

The risks associated with self-administering insulin is so frightening; most people have no idea how much to use, often resulting in hypoglycaemic symptoms, and as a result are often too confused and disorientated to pick up the phone and call an ambulance. There have been reports of bodybuilders all over the world being rushed to hospital suffering from classic hypo symptoms and unconciousness as a result of low blood sugar. However, as the insulin they favour is rapid acting, they recover very quickly. Even a person with Diabetes who has to self administer insulin, or requires a parent to give the correct amount are dealing with a very dangerous drug.  The high risk of unconsciousness, coma or death are all very real, and are now taken with a grain of salt. Even though insulin in itself is not an addictive medication, the routine of injecting, muscles growing stronger, bigger and harder, and the obvious increase in endurance are all enough to classify insulin abuse as a pyschological dependency.

But wait! There’s more..

A female friend of mine is having physio on her knee after a netball injury. She has Type 1 Diabetes, and whilst waiting for an appointment, she couldn’t help but notice a chunky, well built guy take a seat. The sleeves of his t shirt were cutting into the muscles bulging out of his arms. She had a 45 minute wait, so she decided to perform a fingerprick on herself. She grabbed a muesli bar from her backpack, as her reading was 5.6mmol/L-an excellent result, but one that would definitely result in a hypo if she had to wait and then endure a taxing session with the physio.

Suddenly, she looked up and saw the musclechunk sitting right beside her. He was engaging in general chit-chat, asked her where her pain was, how she hurt herself, how she copes with sport and Type 1 Diabetes. My friend is a beautiful, innocent, sweet-hearted little kitten; she had no idea that any moment she was going to be hit on. Or should I say, hit up.

By the time she went into her appointment, Boofhead had conned her into giving him two vials of rapid acting insulin that she always keeps with her in her hypobag. “Apparently”, some “creep” had gone through his bag at the pool and stolen his medication kit which contained his imaginary insulin equipment for his imaginary Type 1 Diabetes. He was even brazen enough to say that it was probably a “junkie” looking for something a little bit harder than insulin, and how disappointed they would be. He pulled the “Oh, I’m gonna be crook tonight, my levels will be through the roof” routine on her. She was a sucker for a cute boy in distress, but she grew suspicious when he rushed off after he had persuaded, charmed and conquered. He used the excuse that he had a friend to pick up from the bus station and how they would be waiting. She decided to ask the receptionist whose appointment was first, hers or his; the receptionist replied, “Oh! I thought he was with you! He’s not a patient here..”

My friend quickly contacted me when she arrived home,  audibly upset, and generally feeling violated that she had been played for a fool. We decided whether we should contact the police and report that there was a sheister targetting people with Type 1 Diabetes. She decided against it, as she felt that she had willingly given it to him. Despite my frustration, I respected her decision.

So, today, I decided to find out if there is a significant silent problem in the area. Afterall, Lance has Type 1 Diabetes, and I am responsible for his insulin.

I headed for the Needle Exchange at the hospital. The girl behind the perspex barrier with pea sized circles to project our voices through asked me “what I was after.” As it is a completely confidential program, I knew that I wouldn’t be getting any information from the staff about bodybuilders injecting insulin. Feeling my face turn hot and red, I asked for needles suitable for injecting insulin. (I felt quite the fool, knowing that Lance had used these very syringes when he was diagnosed.)

“Are you a diabetic?” she queried.

“Oh no, no..”I stuttered. (Hopeless Liar!!) I need them for.. other purposes.”

“Okay, how many were you after?”

“Um..just two?” I replied, not wanting to appear too obvious or like I was a runner for my non-existent beefcake boyfriend.

“Okay..just a few questions..how often do you use?”

She asked me like she wanted to know if I wanted Coke or Diet Coke.

I replied, “Oh, they are actually not for me. My partner has a competition coming up, and he wants to get just a bit bigger so he can perform to his best, you know?”

“Oh okay..well, how often would you say he uses?”

“Umm, up to 4 times a day?”

“Hmm. You’re going to need more than 2 needles in that case. I’ll give you a pack of 20 then.” she said, totally deadpan.

“Oh..okay. So, what do people usually ask for when they come here for needles? I mean for, you know, insulin, for..non-diabetics.”

“The maximum we give out is 2 packs of 20, and then we give 10ml barrels with different sized guages for the steroids.You can add the insulin in with the steroid and avoid having two injections.”

She said it. She actually made reference to insulin being used in an illicit nature. 

 She had fallen into my trap without any danger or suspecting that I was looking for information. I was feeling really uncomfortable however, as other clients had started to line up. They seemed edgy, shuffling their feet, watching the seconds tick by on their watches.  I could sense their urgency.

I wanted out.

“So just the 10mls then? I’ll give you a pack of 10, see how you go.”

“Yeah, that’ll be fine. Just those, please.”

“Oh and before you go, okay, I have to tell everybody this, if your boyfriend appears tired or irrational or unable to stand after he injects, he will need to be brought straight to the hospital. You can ask your doctor for a Glucagon Kit, which will reverse the side effects. But, yeah. Just be careful with the insulin, okay?”

“Yep, no problem. Thanks.”

She handed my a pile of brochures on safe sex, Hepatitis C, Sexually Transmitted Diseases, a pack of condoms and some lubricant and a fridge magnet with their hours of business printed on it.

In the other hand was a brown paper bag with the contraband.

(I had to work at a Needle Exchange whilst studying a Counselling Unit in Psychology. I knew from my time there that even if you personally find giving needles for shooting up drugs morally deplorable, the main objective is to promote safe usage of needles, and to reduce the harm factor. Clean, unused and plentiful needles and sharps containers that are free and easily obtained lessens the chance of users sharing needles and equipment, therefore reducing the chances of contracting or spreading blood borne diseases such as Hepatitis C and HIV.)

My next mission was to a gym, it has a reputation for body sculpting and personal trainers that work you hard for optimum results. I went in and approached the counter, asked questions about membership, and the possibility of hiring a personal trainer. Whilst I was filling out the forms, an impressive looking guy emerged from a door behind the counter. He sat down beside me, and read my nome de plume off the form.

“Christine! Great to meet you! You’re thinking of getting a personal trainer for the New Year huh?” he asked enthusiastically. 

“Well, I want to ask some questions first. So maybe you can help me?” I flashed my widest and most enticing smile.

“Oh sure, sure, sure. I’m your man. What areas of your body did you want to concentrate on?” he asked, whilst maintaining strict eye contact with me.

“Umm..probably just general toning up, I’m pretty happy being me actually. You see, since my son was diagnosed with Type 1 Diabetes, I don’t have time for luxuries such as the gym anymore. But I think he’s old enough now that he could come to the creche and wait until I had finished my session.”

“Oh, poor little guy! So, does that mean he’s on insulin?” he asked.

“Oh yeah. Never leave home without it.” I smiled.

“Well, no dramas there. You are welcome to keep some stock for emergencies marked with his name on it in our staff room fridge. That’s what we do for our other diabetics.”Hmmm, interesting…

“Wow! You mean you have other people who leave their insulin here? That’s such a sensible idea!” I exclaimed, I was waiting for the chance to nab him whilst he was vulnerable..

“Yes, well we think so. So, you’d need to bring glucagon along as well, wouldn’t ya? I mean, it’s risky for any diabetic not to have a box of that in the fridge,” I was so close, but I just didn’t know how to sew up the conversation…

“Well no, I wouldn’t leave that in the fridge, I actually keep that very close to me at all times.”I assured him firmly.

“Oh, actually, you will get the best possible results if you keep it refrigerated you know..one of those along with his insulins would certainly keep your mind at ease.” he smiled.

“Hm. Yeah.” (So nervous at this point.) ”Um..actually, is it true that you guys have had Australian Champions in body building that have trained at this gym?” I asked with mock interest.

He proudly pointed to a cabinet full of trophies.
“We have done really, really well, Christine. We’ve exceded our expectations in all areas of the centre. I’m sure you will have a very positive experience with us.” he smiled warmly. OK..do it now…

“Well, that’s probably true, but my biggest concern is why you want me to have my son’s insulin here so badly, I am fully aware of insulin abuse and I know that our city is not immune from it. Stealing insulin from a person with Diabetes is so unbelievably serious, you know that don’t you? I mean, it’s an offence that you could easily be charged for, and possibly even face jail time over.”

His obvious fake-tanned face turned red, his enthusiasm was replaced with a snipey, punctuated hate speech.

“How DARE you come IN here ACCUSING ME of running MY establishment…hang on, are you a COP? I’m NOT saying anything else until I get MY lawyer on the phone. You’re a F*****G EVIL  W***E, B***H!”

“Oh, thanks so much for that. That pretty much answers all of my questions. It’s amazing how you can dob yourself in without even realising it. Here’s your form and pen, and thank you so much for your time.”

I got out of the building without him saying another word.

I thought that I might actually vomit as I crossed the road. Admittedly, I was shaken after being sworn at by someone who obviously had a truly nasty streak, but also that the time has come where my child’s insulin is now considered valuable on the black market.

At this point, I just had to get today off my chest,  as I am considering what to do next. I know I was playing with fire, but I just needed to know. 

 It will be interesting to watch World Records being broken in China at the Olympic Games later this year.

Oh WOW.

Today was hardcore.

Lance woke at 9am, aware about what was going to happen, but still none the wiser about WHAT WAS GOING TO HAPPEN. I felt pangs of guilt as I watched him eat his breakfast, and lift his shirt without even thinking when he heard my footsteps approach him with his injections. He woke with a 7.9mmol/L reading, which was good, but I knocked two units off the Levemir dose, as well 2 of the Novorapid. If there was one day where I didn’t mind if he was high-ish, it was today.

We arrived at the surgery at 10.30am. Whilst Lance ran straight for the PlayStation 3, I went and had a chat to the “esteem staff.” (Yes, I’m being serious, this dentist employs chirpy, shiny girls with glowing eyes and huge smiles to mentally prepare you for the blood, pain and gore you are about to experience or witness.) They informed me that the dentist was preparing the “happy gas” as we spoke, and that Lance would be calm and rested, even whilst needles were administered.  Their bubbly speil fizzed over-the-top; I have to admit I found myself feeling nowhere near as ill as I did when I woke up. Oh sorry, I mean, when I got off the sofa. I was up making diet and regular jellies of all different flavours and colours at 3am. I watched Napoleon Dynamite, but even that couldn’t lift me out of my angst. However, now I felt quite peachy knowing that Lance was going to be in really good hands.

His ears pricked up when he heard his name called, and he jumped up and greeted the dentist and her assistant with a coy smile. The welcomed him and told him to make himself comfortable on the chair. I perched myself on a designer cube made out of purple leather, and slid it over towards my boy. He was given a squishy squeeze ball to kneed when he felt that things were becoming overwhelming, and then covered with a soft blanket.

A nose piece was fitted over his face. It was connected to two giant gas bottles. It was adjusted according to a number on the computer that holds all of my son’s dental history. He was told to concentrate on his breathing, chest rising, falling, rising, falling; the levels of nitrous oxide increasing with every breath. In fact, he was SO relaxed, he looked like he was there for a massage!

The next part wasn’t that great, but as Lance didn’t mind, I was okay with it too. The dentist had this super piece of technology which she gave me a brief explanation about. Instead of those giant stainless steel needles that I remember having rammed into my gum as a young girl, Lance had a “wand” with thin tubing attached to it, filtering through the “sleepy tooth juice” to the spots that needed to be numb. He didn’t make a peep! 14 injections to his gums, and one on the roof of his mouth, and nothing. I was impressed that his $20-per-minute visit was going so swimmingly!

By this stage, Lance was well and truly “happy.” He was humming songs, laughing to himself, he even turned to dentist and said, “My fridge is full of jelly-you are very welcome to come and have some with me!” She enthusiastically agreed, turning her head and mentioning that kids’ especially speak gobble-di-gook when under the influence of nitrous oxide, and don’t remember any of it when it’s out of their systems.

She then picked up a delicate instrument and literally scooped each tooth out! Within a minute, she had four small, but rather grusome looking teeth sitting in a plastic cup. Four separate gushes of blood began to flow down Lance’s chin. He had a gobful of gauze pushed into his mouth and light pressure applied on to the dents in his gum where his little teeth used to sit. The held it there for ten minutes, and then slowly turned the gas off, so that only pure oxygen was streaming through his system. 

He sat up with a start and we met each others eyes. He tried to smile, then realised that his mouth was full. He gazed around the room as if he had never seen it before. The dentist then folded up a thick wad of cotton gauze and asked him to gently bite down on it. He complied, however as soon as he tried to speak, he was hush-hushed by everybody so that blood clots could form. This was going to be the most delicate part of today. Lance could have no trampoline, no rock-and-roll wrestling with Chino, just total rest, with his head above his heart. The clots had to form well so that there wasn’t anymore unexpected mass bleeds.

He was then taken to the recovery room, and I was ushered to the receptionist’s desk. She pressed a few numbers on her computer.

She looked into my eyes, her flurescent white teeth smiling sweetly, as she read out the four digit number.

(gulp.)

I handed over my card, and realised that it was the best money I could have possibly spent. (Second in line would definitely be my new Prada Handbag that grabs every girls’ attention. I picked up at the post Christmas sales for half price.)

My son was oblivious to a procedure that I, as a child, would have thrown the biggest tantrum known to man.

Even the dentist came out, and said, “Wow Kate, he is definitely, my best child patient. That procedure normally takes a good 90 minutes by the time I have talked the patient through each step, and gained their trust, but Lance had no fear, totally amazing. He got through that in 50 minutes, wow.  Highlight of my week. See you in seven days for review.”

(He is always amazing at consultations. I guess because he has had so many examinations-eye tests, podiatrist examinations, circulation tests, 3 monthly blood tests, a colonoscopy to diagnose Coeliac Disease, immunisations-all since he was was old enough to remember.)

Just as I went to the recovery room to take him to the car, the dentist appeared from nowhere with a handful of gauze and a list of post-extraction instructions.

“When he gets home, be prepared for tears, because his little body will go into shock after what he just went through. He can stop having the gauze in his mouth when the bleeding ceases. Okay?”

Hmm. Okay.

We were home within minutes. I made him a bed on the sofa and put on a DVD. I gave him a light blanket and helped him with the gauze changing. I was a little alarmed at how much blood was seeping out, but now that it was mixing with saliva, I guessed it looked more dramatic than it appeared.

“Mum, I’m finished with this stuff (gauze) now.”

I explained to him that we had to leave it in until the bleeding stopped. He whimpered and grizzled.

I set up the glucometer and pricked his finger.

18.5mmol/L.

So his adrenalin had booted his blood sugar through the roof. That’s okay..he’s had less insulin too….

“Mum, can you make this numbness go away? I can’t feel my nose!” he complained. I could see what was about to happen….

” It will go away in about 2 hours, just after the DVD,” I calmly said in my smoothest voice.

He thrashed himself around on the sofa and kicked each leg like an Olympic swimmer on the home stretch.
“OH I CAN’T WAIT THAT LONG! THIS IS THE WORST DAY OF MY LIFE. EVER!!!!

Then the tears came. He cried and he cried. Just as he would start to settle, I would have to put in more gauze, and the tears would start all over again. I gave him a dose of Panadol. (Just so you know, Panadol, honey, and lemonade are my most loathed items on the “I’m pissed so I’ll spit it at Mum” list. Everything else is tolerable to a point.)

So I gave him another dose of Panadol, this time in a large syringe. He swallowed it and stared at me with disdain.

I pat-pat-patted and rub-rub-rubbed his back, in an attempt to soothe him. Finally, the tears stopped.

He had literally cried himself to sleep.

When he awoke, the bleeding was almost over. A pale pinkish hue stained the last piece of gauze.

“Guess what, bug? No more gauze!!” I smiled.

Then  I grimaced. HYPO, and bad.

I tested, just to see what I was dealing with.

1.5mmol/L.

I shoved my glucagon kit under the sofa cushion and rushed for juice in a cup, with a straw, to avoid any gum area. Surprisingly enough, he actually drunk it. He was actually very thirsty, but I guess I would be too if I cried and ranted for two hours straight. I mixed another glass of juice with a sachet of sugar into it. He drank that down too. He looked better already.

So…that was our first experience with a complication related to Diabetes. The Dentist said she could feel his adult teeth just about to push their way through, so he won’t be gummy for long.

My next 365 photo will feature some remnants of the day.

Now I have to come up with an idea of how I can get him to start his salt-water gargles tomorrow.

ARG.

 When Lance was diagnosed, I spent a few weeks in the Hospital Diabetes Clinic.

I kept hearing whispers of ”Glucagon this, Glucagon that.” I asked a parent sitting next to me what it was.

She said, totally deadpan, “It brings ‘em back when they are too screwed up to eat, or unconscious or nearly dead.”

“Oh right. Hmm. Thanks.” (Shudder.) 

I decided to approach the diabetes educator about it.

“Oh honey, you don’t need to worry about that yet. Concentrate on what you really need to know for now, ok?” She seemed convincing, but those words just kept reverberating through my head.

“Oh, it brings ‘em back…”

I asked another Dad what he knew about it.  I couldn’t believe the educator didn’t want me to know about it. I wanted to know everything.

He told me to follow him. We sat at a table together and he grabbed an orange. He took a bright orange rectangular box out of a drawer, and told me how glucagon was a hormone in the body, and how an injecction would stimulate the stores kept in the liver to be released, and increase blood sugar within 1o minutes or so.He told me how much I need to inject into a child of Lance’s body weight. I got the right amount and pierced the orange, imagining it was Lance’s thigh.

I got an appointment with my GP and asked more questions. The Dad at the clinic had given me a great head start. I didn’t know that I needed to get a glucagon kit on a script, so I promptly asked for one. We went through the instuctions step by step. He assured me that it was designed for emergency use, and that there was no assembling or stress in preparing the injection. He suggested that I carry it with me at ALL times. Especially with a child Lance’s age, nobody, not even he knew what was happening in his body.

I began carrying the kit everywhere I went, and hoped that I would never have to use it in public. I felt my heart in my throat at the thought of how I would be all fingers-and-thumbs the first time.

A few months past, and I was still carrying the orange box around with me, sleeping with it under my mattress, slipping it in Lance’s nappy bag.

Shortly after my birthday in February, I found out that my brother had terminal and aggressive stomach cancer. He was 43 years old, and we basically had to spend as much time with him as possible, as we were told that he could go at any day. It was so difficult to spend time with him knowing that it could be his last day on Earth, and then swallow back tears and remain calm for my baby. He was well and truly used to fingerpricks by now, and I was noticing that he was slowly stabilizing and his readings after meals were falling to lower numbers. I guessed that the remaining few beta cells were fizzling.

On the cold and foggy morning of my brother’s funeral, I asked Lance’s Dad, Scott, to take Lance away to a cafe and a nearby park. I didn’t want him to see his family upset and crying. My family decided on a Requiem Mass for my brother, which lasted for an hour. There was then a 30 minute drive to the cemetary and the priest concluded his procedings at the graveside.

Scott grabbed my attention and called me over to a nearby garden. I excused myself, and he told me that Lance was fretting for me, and that his BSL was 9,9mmol/L fivc minutes prior. As soon as Lance saw me, he leapt out of his father’s arms and snuggled into my jacket and grabbed his comfort strand of my hair. I stood away from the end of the ceremony, and had my own private words with my brother. I was all cried out, so I was happy to have to have my baby with me.

People started to walk away from the seating and surrounded me with their condolences and love. Lance was looking around wide eyed at all of the people that he didn’t know. Occasionally, he would catch a glimpse of my parents, or my nieces or nephews, and point, and call out to them. One of my cousins came up to me and gave me a huge hug. Lance was shy and put his head on my shoulder. I spoke to my cousin for about 5 minutes, he was in shock at how quickly the disease had ravaged my brother’s body and he reminisced fondly about him as a younger man.

“Aww…your little man’s asleep..he’s so cute.” my cousin cooed.

I was shocked. Lance wasn’t due for a nap..I took a peak at his face. He seemed unusually heavy.

His lips were blue and his face was almost translucent. I tried to yell for help but no words would come out. I raced him over to our car and laid him on the back seat. He had dropped to 1.8mmol/L in 30 minutes and was unconscious.

People started reaching for their mobile phones to call an ambulance. I announced that I had an injection that should get his level up. I had half of the vial implanted in his leg within 30 seconds. Screams roared from somewhere deep within me. Of all days, of all times, how could this happen now? Lance started to cry and thrash about. I told everyone that I thought he would be alright now. Two minutes after that he wailed and grabbed his thigh, tears spilling down his pale little face, sobbing uncontrollably. I had to leave my brother without saying goodbye or leaving him my tokens and rushed to the hospital to get him looked over.

His BSL was now 11.1mmol/L. He looked wide-eyed around the car, giving me huge grins and chuckles. I couldn’t believe that I was at my brother’s funeral, and my son’s life was in danger for approximately 10 minutes. A double tragedy was prevented that day.

Glucagon. I would NEVER be without it ever again. 

In this photo is a video supplied by Novo Nordisk about how glucagon works, when and how to use it. It is slightly confronting regarding the acted out hypo, but it shows exactly how a hypo can happen, and how blood sugar can drop within minutes to the stage where the person with Diabetes is unconscious.

Lance used to go through approximately 2 glucagon injections a week when he was small. I now have some that are out-of-date, because his control is tight and he is able to help me a lot regarding how he is feeling. We can usually stop a severe hypo with glucose drinks and tablets now, and without the ambulance hearing over their two-way radio that there was a diabetic emergency, and guessing that it would have to  Lance.

Diabetes that is well controlled can let  you live life with just a few hitches here and there. Some people with diabetes aren’t so lucky, There is no such thing as one person with diabetes being “worse” than the other; it’s just some people need extra or less food, or extra or less insulin or have faster metabolisms. It’s all a huge balancing act. We have spoken to people who have never used a glucagon kit,  some who don’t even know what one is, and even worse, some who have a script for one, but have been told not to “bother” getting it filled. Lance’s glucagon kit takes precedence over my wallet, my keys, my mobile phone-everything.

Lance can have a hypo within minutes, or drop 10 mmol/Ls in 30 minutes.This is highly stressful and disturbing; thankfully, most times he has no idea that it has occurred. Without glucagon, this project may not exist. This easily available injection has saved my son’s life on numerous occasions. I hope to make more newly diagnosed people aware that this kit is a must have item in their house, work, gym bags or belongings. Diabetes-you just never know….

Insulin is not a cure.