Why did the insulin die in my pancreas?

After years of reading success stories by the hundreds about people with Type 1 converting to insulin pump therapy, I am so delighted to announce that finally, it’s Lance’s turn.

After our last round of blood tests, I decided that I can’t compete with mimicking a functioning pancreas any longer. Therefore, with an exchange of a few sentences each, our endocrinologist and I decided that it was a smart move to pass the job over to the Medtronic Paradigm Real Time Insulin Pump.

It took only a few phone calls before just like that, Lance found himself booked into hospital. His pump is waiting for him there. We have an appointment with a dietician, then plan to check into a lush hotel, and casually meander over to the hospital the following day.

However, it seems that Lance maybe a not quite as eager as I thought he might be.

I could instantly tell that something was bothering him late last week. Everytime I have mentioned the pump, he will either change the subject, or just switch off.

Over the weekend, I used some reverse psychology to get to the root of the problem.

“You know what, Lance? I’m a bit worried that you aren’t going to be able to have comfortable sleeps when you have the pump…do you think it will be annoying?” I asked, as innocently as possible.

“OH Yes, MUM! I have been worried about the exact same thing! I am scared that it will get tangled up and it will get ripped out and I will bleed all over the sheets!” he blurted out. He looked SO relieved to finally have heard himself say it.

“Well, I remember when you wrote to Brendon, and talked to him about the pump. He said that it isn’t uncomfortable at all. He would know, because he has had his pump for a long time now.” I said, grabbing my laptop to find Brendon’s email. (Brendon is Lance’s penpal who lives in America.)

“Oh yeah. That’s right. I forgot about that. What if the pumps in America are different to the ones in Australia?”

“Your pump is made in America, so it will be just like Brendon’s.” I could tell that Lance was feeling a little  better.

“Mum?”

“Yes?”

“Is it okay if we don’t speak about the pump for a little while? I’m really over hearing about it. I just hope these nurses and doctors know what they are doing..” he said, complete with furrowed brow.

I held in stifled laughter, and assured him that that’s their job; to help people with their insulin pumps when they come to hospital, and make them feel safe enough so that they feel confident enough to return home.

I can totally understand where his worries lie.

From a lifetime of injections, to becoming attached to a machine that suddenly takes the place of the insulin pens we know so well, I put myself in Lance’s shoes, and I can understand that suddenly stopping insulin, and handing complete control over to a machine would be very daunting and frightening indeed.  

Just because he comes across like a knowlegable and together 30 year old, doesn’t mean that he doesn’t have seven year old fears.

He is catching up with his good friend whom he travelled to Kids in the House with this week. She has been a pumper for almost four years, so she is an expert-and Lance adores her. I am hoping that talking with her will allay some of his fears. She is going to show him her site and pump, and explain how she doesn’t let it control her every minute.

When Lance was diagnosed, a handful of people had insulin pumps. Now, we are classified as old schoolers, as we are still administering insulin via injection.

He also hit me with another pearler tonight.

“Mum, HOW on earth am I supposed to know how many carbohydrates are in 5 grapes? Or even my dinner? I’m not going to be able to tell my pump what to do properly, because I don’t know about carboydrates properly yet..”

My poor precious boy.

I scooped him up in my arms, and told him that he needn’t be worrying about carbohydrates just yet. I made sure he understood that it would still be my job to make sure the right amounts were entered into his pump. I assured him that I knew that with his sharp mind, that it wouldn’t take long before he remembered and wanted to do it all himself. He half-smiled; he has an extraordinary memory.

It’s so easy to think that you are giving your child the most amazing gift in the world by starting them on insulin pump therapy, however, it did make me stop and think that little minds do tick over, and it’s very important that they have some pre-pump advice, from a fellow pumper, or even a child psychologist. (Most good diabetes clinics have one on staff.)

For now, I’m making sure he gets plenty of TLC and lots of hugs and extra love. (If that is at all possible!)

I realise now I probably did overdo the pre-pump hoopla.

Once he gets used to the idea, it is going to take ME a while to learning how to exist in the world again. We have both become institutionalised by living a life based around numerous daily injections.

Anyway, his steel grey pump is waiting for him with his name on it.  I will be in raptures when the day arrives when he realises that he can be “just Lance”…. for the first time that he can remember.

After a very trying, emotional and frustrating few weeks, I feel I can finally face reading the words that describe the dilemmas that have occurred since my last post.

Lance has become very accustomed to waking up, and handing over his morning urine sample. We have been collecting urine in the morning even before we get to say “Good Morning.” We then walk it up to the pathology centre, where it gets labelled, and tested.

He’s asked a few questions, but he hasn’t been disturbed by having to urinate into a plastic jar. He mainly wants to know what the doctor is looking for. The doctor is looking for elevated levels of albumin, but I haven’t told him that. He is a little boy with a lot on his mind at the moment.

We have been planning a trip to Sydney for ages now. and because Diabetes always comes first, we have had to postpone it temporarily. My brother and his new partner are dying to see Lance, and my sister and her husband have recently moved state, and I desperately need to see some friendly faces. We cannot go until we have a few more tests done.

I know and share Lance’s Type 1 Diabetes.

I tolerate and swear daily about the limitations of preparing and eating a coeliac diet. Still, I can smile.

I rub Lance’s back and comfort him when his diabetes-related gastric reflux condition flares up. He curls up into a ball and winces due the sharp pains in his stomach that radiate through to his back, and begs me to make him a hot water bottle. Thankfully, his medication has quietened this problem right down, but on occasions, he still deals with high levels of pain and uncomfortablity. It always dies down, and we smile and take a sigh, grateful that another episode is over.

However, after a 7am call from the Pathology Lab, asking me to repeat Lance’s first urine collections, my heart was firmly planted in my throat.

During my absence, I have become accustomed to a new term, known as albuminuria.

A word associated with kidney damage, late stage Diabetes, high blood pressure, cardiovascular disease..

 Not my son. Hasn’t he tolerated enough?

Apparently, every child with Type 1 Diabetes under the care of an endocrinologist or a paediatrician is tested for elevated levels of albumin once every year, especially after they hit the 5 year diagnosis mark. Lance has just had his 6th year blood work done, and his levels came back, elevated, and left our endocrinologist looking very awkward and confused.

I closed my eyes, felt my throat closing up, and blinked away streams of hot tears.

We shook hands, and my son and I walked away from his consultation rooms. Lance had obviously not been affected by phrases such as “kidney damage” and “abmormal levels.” He was more interested in the gluten free cookies we always indulge in after an appointment.

I handed him a ten dollar note, and watched him approach the waitress and ask for his cookies. Is it any wonder that people don’t think that “he doesn’t look sick.” In fact, I was filled with admiration for how tall and lean he has become, how his speech has become highly articulate, and he knows the perfect way to behave as a customer, and may I add, a perfect gentleman. He had bright rosy cheeks, and azure blue beaming from his dancing eyes.

So..after ten days of tests, phone calls, missing test results, repeated tests, unnecessary bloodwork, waiting for up to 2 days for his specialist to return my phone call, practising smiling and looking happy in the mirror so as not to alert Lance that there was a problem, I finally have a diagnosis, and another specialist appointment; it’s more of a, “So..what’s next?” consultation.

I would like to take this opportunity to thank with all my heart, the countless messages, phone calls, comments on my blog from strangers, pick-me-up gifts from friends, fresh flowers delivered to my house and follow up concern for Lance’s wellbeing…the fact that people cared enough to keep Lance in their thoughts means so very much. I haven’t been able to answer the phone or even turn on my computer over the past weeks; I felt that it would only take a kind gesture or a familiar voice to set me off, and I was afraid that if I started crying, I wouldn’t be able to stop. I have had to keep my emotions intact and in control for Lance’s sake; he falls apart if he sees me distressed or upset. He will do practically ANYTHING to stop me from crying. I don’t want him to remember his mother as a chronic emotional wreck when he is older. (That doesn’t mean that the minute he falls asleep each evening, that I’m not sobbing my heart out.) It takes great restraint to keep tears at bay all day long, I can tell you! Then there’s my family. If I even have a faint quiver in my voice, they are immediately petrified that I will become distressed. It hurts them. It hurts me that they think I should keep a stiff upper lip, too.

So that’s the situation. I will keep up to date with Lance’s pending test results. He is happy, and is loving the school holidays at the moment.

Oh yes. To the doctor who suggested “dialysis as a future option”, late on a Friday afternoon, leaving me an absolute zombie for two agonising days…I am considering getting a voodoo doll made that represents you, to use at my leisure. The following Monday, Lance’s specialist soon knocked that thought out of my head, asking me “who on earth told me such a dreadful inaccuracy.” He knows it was you, so maybe you might like to consider your bedside manner when dealing with future clients. That’s if you haven’t been demoted or asked to take permanent leave.

If you haven’t had your child tested for microalbuminuria, and they have been diagnosed for over five years, please suggest that your doctor includes the test along with the 3 monthly A1C request at your next visit. Diabetes has just too many nasty little surprises that you must never assume your child is immune from.

Again, thank you for the love and prayers. It helped so much to know that we were in loved ones’ thoughts.

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.

~~~~~~~~~~ 

Diabetes and I have been at loggerheads ALL week.

This is the first time I have had a chance to write anything for days. Lance has had one of his worst weeks in his diabetes history. I simply don’t know where to begin.

I actually meant that, I don’t know where to start.

Okay..well. He has 70 new holes in his fingers since I last wrote. He looks like he has had two small teething puppies chewing on his fingers for hours on end. For the first time ever, he is baulking at having tests. Because it hurts, and there is nowhere left on his fingers left to test. I have to move to the base of his thumb (the fleshy part on his palm) to test, which has gone down as well as a bunch of lead balloons.

Instead of being “Hypo-boy”, he has turned into a walking toffee apple.

All week long, Lance has been been living in the 20mmol/L vicinity.  That’s the roughneck part of Diabetes town. Really hard to escape unscathed. I have thrown insulin pens in the bin, and replaced them with brand new ones directly from the fridge. Nup..the insulin wasn’t losing its potency. The due date isn’t until September 09. It’s NOT the insulin.

So it must be Lance. Something has gone beserk inside his body. He is well, fit, and shows no signs of infection or sickness. Growth spurt I hear you say? Maybe, although the last one has only recently died down.

I made a long appointment with our GP to discuss what to do. I can usually titrate and tinker around with a little bit of Novorapid here and there, however this week, he has been having 8 units extra, on top of his daily dosage. He has 16 units of Novorapid in total everyday, and it usually works like Pacman, gobbling up any tiny globule of sugar in his blood. It’s so good, it’s dangerous. Usually. This week, I could swear that I’m on Candid Camera..hey, have you guys done the ol’ switcheroo on us? Put water into his insulin pens?

No. Sigh. DAMMIT. It couldn’t possibly be something so simple.

Then there’s the never ending threat of DKA sneaking up and tapping us on the shoulder. I mean, Lance has spent so much time in the toilet this week, his body desperately trying to flush away this overload of sugar that has left him so weak, achy, restless and responsible for his washed out, puffy appearance.

Ketone strips line the inside of the bathroom bin.

I decided that I would introduce an extra injection at lunchtime. By crikey, I cracked the code.

The whole of yesterday and today have been just perfect. 7mmol/L or thereabouts all day through.

Only this afternoon have the rosy apples returned to Lance’s cheeks, He doesn’t look like a clammy, sickly addict from the ghettos of Diabetestown anymore.

Lance’s new pump is going to kick all of this seesawing to the kerb.

It’s just a matter of patiently waiting..waiting..waiting…

In the meantime, I am struggling with the many thoughts of what a week of constant hyperglycaemia has done to his organs, his arteries…I try to push these thoughts away, despite the toment and fear they instill in me…

It’s not like it’s raining cats and endocrinoligists here, either.

It’s not like I can get an appointment for tomorrow and plant the evidence of the past week in front of an endo and get some reassurance and explanations. I’d even settle for an understanding nod-of-the-head at the moment.

Our next appointment is over 2 weeks away, and I can’t do a thing to change it.

Despite my fears and mournful revalations, I am so grateful that the hurri(sugar)cane has passed.

The voracious consumption of water has died down.

I don’t have to cringe when the toilet flushes…Lance can actually celebrate the return of carbohydrates tonight, as they were enemy this week.

So now, we are up to 6 set injections a day.

7 new holes a week.

I don’t think I could bring myself to complain about a lil ol’ hypo for a while after this…

However, as usual, my boy smiles broadly at me, he hardly seems aware of the nightmare that was the past week. Despite the fact that he suffered, and had headaches, and legaches, and cried in sheer frustration, he is now at peace within his body.

Exhale.

Lance’s Dad and I have a reoccuring nightmare.

It has nothing to do with his love of Sci Fi flicks, or from disecting dead redback spiders.

Our nightmare is far, far worse than anything you get to see in an art department or in a special effects trailer on location of a horror movie.

It’s real.

It could affect our son.

We see live human evidence of it almost everytime we visit the Diabetes Outpatients Ward.

Severe Diabetic Foot Ulceration (photo taken before amputation.)

(Sorry…I had to start with the worst image first to keep your interest.)

This is such an overlooked issue, yet possibly the most sinister long term side effect of Diabetes.

Peripheral Neuropathy and Amputation.

Lance’s Dad and I both have our own fears for our son as he grows into an adult living with Type 1 Diabetes.

However this is one nightmare that we both share.

You see, our Happy Little Vegemite HATES shoes. Even as a baby, we have a photo of him, on his bouncer with his foot in in mouth trying to tear off his sock. If he had his way, he would roam the streets barefoot and fancyfree.

Lance has a shoe closet that would rival a Beckham offspring. He has different styles and funky coloured Nikes, Pumas, Filas. Canvas laceups, uggs, crocs, Spiderman light-up-when-you-walk sandals, thongs….you name it..he has it.

Last year, I presented a speech at an awards presentation. There, in the front row, was Lance, struggling, red faced and on the verge of a panic attack, trying to remove his offending footwear. (”They were suffocating my feet!!”) At the very best, sandals, uggs, and thongs are still high tolerance shoes for him.

I understand where this fear of being constricted comes from.

On Diagnosis Day, whilst drifting in and out of consciousness and in the firm grip of deadly DKA, Lance had to have a drip inserted into his hand. Except they put it in on a crooked angle. So they had to do it again. (His tiny body may have been lacking in insulin, but he certainly proved that he could crank up his adrenalin!!) His little legs were pinned down to an examination table to stop him from thrashing. His arms were held down, two doctors on each side, so that they could get a blood sample from other arm. His head was even held back by two nurses, to prevent any further chaos due to his furious determination to be released. His azure blue eyes penetrated mine, his face awash with confusion. I will never recover from that look of abandon, that, despite his hysteria, was clear for all to see. His mother who had lovingly held him and protected him for his first year on Earth, had suddenly handed him over to total strangers to hurt him and take away his freedom. Little did he know that I had no choice-these people saved his life.

(These memories are so painful, I had to stop typing momentarily and snuggle up beside my son, my ear pressed to his back, random tears soaking up in his sweet smelling pyjamas. I can still put my hand in his, and he will entwine his fingers with mine, even in the midst of slumber. I will fight to set you free from this my love.)

As a result of this, Lance still has issues with being being held too tightly, seatbelts and wearing restrictive clothing. Shoes are number one on the list of “Let me OUUUUUUUUUUT!”

The point of this story is that I often find Lance outside, frolicking wildly with his dog, with his feet bare. He will agree to come inside and put some form of protective footwear on, but only when asked.

He will climb the fence, and later come hobbling inside, tearfully acknowledging the splinters that he has newly aquired from chatting to My Neigbour. Even whilst I squeeze, remove and apply alcohol wipes to the affected area, it’s STILL not enough for him to remember for next time.

Today, I was absolutely exasperated when I discovered Lance teetering on the edge of the fence again, chatting to his friends who ride by daily. Shoeless.

After his recent discovery of long term complications, I told him to follow me to the PC. I googled “foot ulcers diabetes” and clicked on images. We both remained silent as we observed the gaping, festering holes in feet, toes barely hanging on by a thread, bones visible through the erosion of skin. We looked at each other knowingly. His eyes were like saucers, his mouth was slightly agasp. He gulped, and said to me, “These are adults’ feet. Look at my feet, Mum! I don’t have any holes in them! I’m careful! I know how to be responsible!”

However after he left the room, ten minutes later, I witnessed a scene that allowed me to exhale a sigh of relief. He was sitting on the sofa, climbing into a pair of socks, and strapping on his sandals. He then proceded to go outside. I hated showing him those images…Definitely a case of being “cruel” to be kind….

“People with diabetes are at risk of developing ulcerations and infections within their feet, which have the potential to require an amputation of the foot or leg. In fact, the most common reason a person with diabetes will require hospitalisation is for a foot complication. Even trivial or minor injuries to the foot have the potential to become very serious and threaten a limb.”

Despite Lance’s disdain for shoes, he has learnt to become very aware of good feet health whilst inside the home. He will always report the tiniest graze, or removal of top layer skin so that I can treat it immediately with antiseptic and cover it. (I have learnt that it’s beneficial to make extra fuss over feet injuries, I have even resorted to bandaging an area to psychologically entice Lance into understanding that feet injuries are something to be taken seriously, and that his feet are a very important priority when it comes to his overall wellbeing.)

I have had several debates with parents of other children who have Type 1 Diabetes about introducing feet care to them at an early age. Some have agreed and considered it to be a good preventive measure, others have seen it as just another burden to take on, and that their child was “too young” to worry about a procedure such as amputation.

Two years ago, I made an appointment at a podiatrist that specialised in Diabetic complications. Soon after, Lance had his first consultation with him, as I was concerned about a toenail that had been cut by a well meaning relative. (It was a little too “close” to the edge for my liking…) He also had a thorough examination of both feet, and had his toenails cut correctly.( I asked if he could demonstrate correct nail cutting techniques step-by-step, so that I could continue doing it the same way at home.) He commended me for bringing Lance to be examined, noting that if Diabetes Educators drove home the point of commencing meticulous feet care immediately after diagnosis, that so many tragic amputations in young adults living with Diabetes could be avoided.

Our podiatrist is on our health care team list-we see him annually.

His general advice for parents with children who have Type 1 Diabetes:

Examine your childs feet daily; on top, on the sole, between the toes and on the heel. Look for any cuts, blisters, grazes, discolouring or fungal infections.

Teach your child to dry in between their toes after showering, and have appropriate protective footwear at public pools/showers to avoid adding tinea or other fungal infections to the list of diabetic complications.

It may sound pedantic, and over the top, but a general rule of “shoes outside and socks inside” is doing your child the biggest favour.

Never treat corns, callouses or severe cuts yourself-ALWAYS SEEK MEDICAL ADVICE.

Non smoker, diabetic for 25 yearDiab insuline dependent for 13 years.
Left foot partial amputn 3 m25 years, insuline dnjjjjjjjj

” Diabetic ulcers are the most common foot injuries leading to lower extremity amputation. Family physicians have a pivotal role in the prevention or early diagnosis of diabetic foot complications. Management of the diabetic foot requires a thorough knowledge of the major risk factors for amputation, frequent routine evaluation and meticulous preventive maintenance.”

Visit Diabetes Australia or go to their website to investigate their advice on caring for your feet. They also have online stores in each state; Diabetes Australia Queensland (DAQ) have extensive orthotic merchandise as well as socks and feetcare products.

Looking after your child’s feet now can protect them from peripheral neuropathy in later life. Good feet care, good feetwear, and good control of glycaemic levels is helping your child to become aware that an important part of having Type 1 Diabetes means being responsible for looking after your feet.

If your child does have a serious foot injury, treat it as an Emergency. Tell the ambulance or the hospital staff immediately that your child has Type 1 Diabetes. Extra care will be taken to ensure that the best possible chance of complete healing will occur.

The current motto of the week in our house?

We love NEAT SWEET FEET.

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.

I was blessed to meet Liz Yarker by sheer accident just over a year ago. From our very first conversation, we immediately clicked. In fact, two hours later, I was so overwhelmed that I had just listened to a stranger describe my life as a carer of a person with Diabetes. We silently established a strong and incredible friendship that night.

We still have that special “chemistry”, Liz and I. We are both passionate Diabetes Advocates, and would go to the ends of the earth to make life easier for each other. Liz’s husband, and my dear friend James, suffers from an incredibly complex, rare, challenging and cruel endocrine condition, known as APECED. He has numerous life threatening conditions- Type 1 Diabetes and Addison’s Disease to name the worst of many. His life depends on constant insulin infusions, and consuming countless tablets a day. Liz has recently had to make the difficult decision to stop working, as James’s condition has become even more vulnerable, and without her constant care, she was petrified of coming home and finding him unconscious..or worse. She would often have to call work just as she was due to commence and inform them that James had suffered a severe hypoglycaemic attack and needed constant care for the rest of the day.

Fast foward to the past month…more health concerns have arisen. Liz and James are absolutely inspirational considering the devastating news that they were bludgeoned around the head with. Liz and I are both young women, who have bright futures ahead of us. However, it has been only recently that we realised that we are very much trapped…alone..and isolated. (Liz lives at the bottom of the Southern Henisphere in Tasmania, whilst I am residing near Brisbane. We rely heavily on MSN Messenger to communicate!) We compiled these questions together, and answered them individually. Being a carer of a 24 year old man, or in my case, a seven year old boy may sound like a slight inconvenience. This interview has been compiled and published to crack that myth wide open, and so that others’ can get an insight into what we do to on a daily basis to keep our loved ones’ alive.

Lizzie, describe yourself in five words..
Impatient, friendly, reliable, loving and caring

How has being a carer for James changed who you are, and where you thought you would be as a 26 year old woman?
I feel like I am more of a nag than I would like to be. I thought that at 26 I would be working full time as an Occupational Therapist. I recently got approved for the carers pension and I was so excited! I never thought I’d be so excited to be on a pension.

Do you feel that people who aquire Diabetes at a stage of life where they don’t need full time care are aware of what goes into caring for James?
I don’t think many people at all are aware of the care I provide.

How difficult is it for you to have time that is specifically set out for YOU?

Almost impossible. I don’t really have any time for myself at all anymore. Whenever I am doing anything part of my brain is thinking about where James is, what he is doing, if I can hear him – and if I can’t is it because he is just being quiet or because he is unconscious.

Do you feel naked without a glucometer in your handbag? Yes! My handbag has at least quadrupled in size lately. I never go anywhere without a glucometer, glucagon, solu-cortef, a can of drink and a few muesli bars.

Do you think that if a group of twenty people of various ages and backgrounds were asked about Diabetes and what they knew about it, that they would consider it ridiculous for a person with Type 1 Diabetes to receive a carers payment?

Yes. In my experience most people who have any knowledge of diabetes think that it’s a simple matter of changing your diet, having a tablet, or at worst injecting some insulin and you are ‘fixed’.