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Suffer The Little Children…

I’m a little annoyed.

Maybe it’s all the shenanigans regarding governments and elections of recent times…It’s just made me recall all of the promises and deals that were made relating to an Insulin Pump Scheme that would be applicable for children with IDDM up to 18 years of age before the 2007 election.  

I was first contacted by JDRF Head Office last year, before our Federal Election. A small group of parents and I were asked to contact Mr Howard. Others were pleading with our Members of Parliament to take into consideration how many children with diabetes don’t have insulin pumps, and how desperately they needed them.

On International Diabetes Day,2007, Mr Howard historically announced that, if re-elected, he would provide $22 million to JDRF, to ensure that many children, and especially the ones who truly needed a pump, got one.

Despite our inital frenzy, at this stage, Mr Howard was lagging in the polls, so Kevin Rudd and team were our next target.

We rang Labor party hotlines, we wrote to Kevin personally, we even joined his Facebook Page. JDRF Youth Ambassadors followed him around and spoke of their need for an insulin pump program to combat their ailing health.

He knew that this was something that advocates and JDRF expected him to at least match, or maybe supercede the amount promised by Mister Howard.

So, Kevin Rudd became our new Prime Minister, and we said goodbye to our 22 million dollar promise.

Nothing was mentioned about Health, nor Childhood Diabetes in his victory speeches. I was silently worried.

He made grandiose promises to amend the public hospital debacles, and even establish doctor’s surgeries replaced by state-of-the-art medical centres, where you could see your doctor, as well as have all of your blood work, x rays, physio and dentistry taken care of in the same complex.

Australia nodded and agreed wholeheartedly. This was a man who cared for the little Aussie battlers.

However, in that election promise, there was no mention of a insulin pump grant.

In the meantime, Lance’s health took a turn for the worse. His endocrinologist spoke to me about the possiblity of getting an insulin pump.  When I bought up the possibility of obtaining one through the Insulin Pump Grant, he raised his eyebrows, stopped writing frantically, and shook his head. Hot, angry tears spilt down my face.

I began looking around and finally settled on a Medtronic pump.

The rep, Louise, and I gained a fantastic rapport. 

.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      totally  I really loved the way she communicated with me and understood how desperately a pump would be beneficial for Lance. I mentioned the insulin pump grant to her. She grimaced, and said something along the lines of, “If it does happen, it won’t be for years, and it wouldn’t be anywhere near the amount promised by Howard.” I sighed, disheartened, and continued listening.

 I put DAYS into writing letters to different influential people-some responded, but it all depended on the upcoming election. As soon as we knew that the Labor party were victorious, I began furiously writing to various Health Ministers, Members of Parliament, and King Pin himself, without one reply.

Suffer the little children..."

Suffer the little children...

Just before our annual budget was released in May, our very good friend, Gareth Eldershaw, (Gareth completed an interview for www.whydidtheinsulindie.com earlier this year), wrote to Arch Bevis,Federal Member for the Seat of Brisbane.

This is what Arch wrote in his comments regarding the budget results.

Firstly, he made reference to the letter that Gareth had written to him, complete with Jelly Baby Lapel Pin. (Budget night happens to coincide with Jelly Baby Month, so we make it a point that each MP is sent a pin and request that they wear it on their lapel on the night that has the Nation at a standstill.)

“May is a special month for JDRF as we try to make the community more aware of Type 1. As you know the jelly baby is a sort of motto that represents a vital aid to help us recover from a “hypo” when our glucose levels are too low. There’s a little blue guy in the envelope that I’d like to give you and ask you to wear in May and especially on Budget night.”

I can tell Gareth that I am wearing his little blue guy on my lapel, as I did last night during the budget. Gareth went on..

” We talked about the grant to fund the reimbursement of insulin pumps for kids under the age of 18. 3000 pumps for all these kids (over a 5-year period) would cost $35m. It’s a lot of money I know, but you know how much it will save the government in the future? Of course it will make life a bit more bearable (and safe too) if kids can use insulin pumps.”

I was very pleased to have been able to ring Gareth up today and say that in last night’s budget we made a step in that direction. I do not pretend that we have gone as far as we need to. I want to see the opportunity to benefit from an insulin pump—and not everybody with diabetes is suited to an insulin pump—be made available to all. But I do applaud the Minister for Health and Ageing, Nicola Roxon, for her efforts in recent times in ensuring that the budget includes a provision that will see about 700 young Australians gain access to an insulin pump. I look forward to continuing to work inside government now rather than from the opposition benches to try to have that program extended.

The grand result?? JDRF were given $5.5 million, to be dispensed over three years, to provide insulin pumps for 700 children.

After much planning and deliberating, JDRF will begin accepting applications for contributions towards the purchase of an insulin pump. It will be based on a financial means test, and the most that can be received per child is $2500. Families without health insurance can begin applying for insulin pumps for their children in November.

So, with the average insulin pump costing $6000, (notice, I say average ), and with approximately 1.7 million dollars provided each year, it won’t take long before all of the money is dispensed. If you are a suitable candidate for the $2500, what happens then? How do you get the rest of the money? Fundraising is about the only real option,and we all know how difficult that is.

I’m really not trying to look a gift horse in the mouth.

I’m so grateful that we were acknowledged at all, the heart and soul of some 50 parents went into sharing their children’s private stories regarding life without an insulin pump. I’m sure PLENTY of other charities tried their hardest to get a financial boost without succeeding, so I really don’t want to appear like I’m complaining or ungrateful.

I guess it just smarts a little that we could have had 22 million dollars.

It hurts to think that some families will qualify for the $2500, but will be totally stuck when it comes to raising the rest. Not to mention those who receive $750-I mean, what happens there?

  • Knowing JDRF Australia, they may have some amazing fund raising venture up their sleeve, but in all truthfulness, does it leave families any better off than before this money was offered? Personally, if I hadn’t have paid for Lance’s pump outright, and I knew that there was NO way I could afford to pay for the outstanding amount, I think (and only if Lance’s health was in excellent shape), that I would forfeit the opportunity. JDRF staff are going to have to make some really difficult decisions without being biased to families they know well and adore.

 Vote for whomever will give you a better Health Care System, America!

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Recovery From Assault, Self Loathing, Diabulimia, Self Mutilation And Rehabilitation-One Man’s Pain Infected Decade.

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.

~~~~~~~~~~ 

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Behind Every Man Is A Good Woman-An Expose Into The Lives Of Two Women Fighting To Protect Their Loved One’s Survival.

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’.

When you are so used to picking up the pieces of a severe hypoglycaemic attack where the reading is between 1 and 2mmol/L, does it frustrate you when you hear or read about other’s who talk about a hypo, and catagorizing it as ‘severe’ and their blood sugar level reading was 5mmol/L, do you feel like you are talking about the same condition?
It is very frustrating! I think the thing that annoys me the most is that it makes me so jealous! I would love to be able to complain about a severe hypo of 4 or 5!

How do you feel when you receive almost no support from diabetes specialists? I don’t expect support from diabetes specialists, I feel that they don’t really know what it is like to live with diabetes as another member of the family.

Would you justify that the following statement is correct? James’s diabetes as a whole is almost like a fingerprint-in other words, no two cases are the same?

It is correct.

What do you hope that the future holds for you and James? I hope that we can both get back to work. It’s probably an unrealistic hope but it’s still my hope.

If you were not on alert continuously, do you believe that James could get through the day without you? Yes and no. I reckon he could make it through one day – if he didn’t have a hypo or an Addisonian crisis, and he remembered to have his tablets. However, the chances of this happening is pretty slim so no.

Do you go through periods where you feel like you are totally overwhelmed with so much see-sawing and sleeplessness? Yes. I get frustrated and annoyed at APECED. I get cranky when I am sleep deprived and so that doesn’t help matters.

How does your role of caring impact on your role of being James’s wife? Caring comes first. When we are talking and something doesn’t make sense, I think about his level.

Can you go out by yourself without making contact with James to ensure that he is ok? No! I have to message him or ring him to make sure that he hasn’t gone to have a sleep and his level has dropped. When I was working I used to have my mobile on me all the time so that I could check in.

Do you have the ability to vent your frustrations and fears about living under such vulnerable circumstances? I vent to you, Katey, and to Dan. I sometimes vent to James – but that is hard and it is usually only when I am incredibly frustrated. It is hard to talk to James about my frustration and fear without him feeling like it is all his fault and I make sure he knows that it’s not him I am frustrated with.

Do you believe that a General Practitioner would have any idea about what your life is like as a carer for James? Our current GP does. He is really good and knows how much care James needs. Normally though I wouldn’t believe that a GP would know what I do. Considering they mostly have never heard of APECED, the wouldn’t know how much work it takes.

Do you feel like you have Type 1 Diabetes? Yes. I actually think it would be much easier for me to handle if I had it, rather than being a carer for someone with it.

Because you can’t FEEL what a hypoglycaemic episode is like, do you feel discriminated against by the diabetic community because you don’t have diabetes, yet you treat them constantly and help James to pull through them? YES! I may not have physically felt a hypo but I know the symptoms, I have used glucagon, I know how to treat a hypo, how many carbs to give. I do the work to fix the hypo. I get hurt by comments made when James is hypo and then have to try and forget them because they aren’t ‘real’ comments, they are the comments of a sugar deprived brain.

Does anyone else with Diabetes have the right to make assumptions about how James is reacting to a hypo? No. No one with diabetes knows how anyone else with diabetes experiences the condition. They have more right than someone without diabetes, who has no real knowledge of it, but they still have no right. Did that make sence?

Do you have a instant kindredship with other carers of loved ones with Type 1 Diabetes? Not always… it depends on how diabetes affects their loved one. If they are the carer of a person who has ‘severe’ hypos of 4 – then I have little in common with them.

What about carers who call themselves Type 3 Diabetics? How do you feel about that? I don’t know anymore how I feel about type 3 diabetes. I feel like James’s diabetes is also my diabetes, so how could he have type 1, and I have type 3. It’s a clever name and does help to explain the extent that carers are affected by diabetes, but I think that it will add to the confusion over the types.

Do you feel that carers get enough support? No. I think that carers of people with severe physical disabilities get more support – with respite available to them, but people who care for people with diabetes don’t get enough support.

Do you feel that the visually disturbing, heartbreaking and challenging situations that present themselves in a person with Diabetes would be enough to traumatise their carer? For sure. It is very traumatic to see your loved one unconscious – and to have to try and calmly deal with it is impossible. Knowing that each time we get into bed, I could wake up with James unconscious next to me, makes me never want to go to sleep.

Do you think that the diabetic community take into consideration situations such as: sitting on top of your thrashing child to give them a sugary drink, administering glucagon injections to a person who is clearly conscious and disorientated, receiving physical injuries whilst trying to treat a hypo, or even being all alone with no one to help you whilst you wait second by second for James’s eyes to flicker open? I think they think about it, they are grateful for people who help them, but I don’t think they stop to think about the affect of their hypo on their loved ones. I don’t think that they CAN think about it – because I know if I was in their shoes I wouldn’t want to consider the impact of my condition on my loved ones. It is horrible that people need to go through hypos and experience the after effects of them, but carers go through a lot too. I am the one who gets hurt by comments made when hypo, I am the one who has to stick a huge needle into James’s leg, I need to put him into the recovery position, I have to watch to make sure he keeps breathing, I need to watch the clock to know when to ring an ambulance if the glucagon doesn’t work, I need to check James’s level every minute to see which direction it is going, I need to get the soft drink and straw and make sure James is able to drink it without choking on it. I am responsible for saving his life – and I am expected to do it calmly. While all this is happening James has no idea what is going on. His first idea that anything different has happened is when he wakes up and sees the glucagon box.

Because you don’t have diabetes, do you feel as if you don’t have the right to make comments or compare situations with those that do have diabetes? I feel that my comments aren’t taken seriously and that I don’t know what I’m talking about – but I still make comments and compare situations.

Does the carer’s allowance seem paltry to you, considering how much of your day is devoted to caring for James? YES! Carers live off a wage that is $200 less than the federal minimum wage yet we work 24/7. When I was working I was getting paid more than I do now – and I was only working part-time!

Do you have anyone who could step into your shoes if a situation arose? Not in Tasmania. If anything major happened I know that my family and James’s would try to step into them – but so much has changed with his care lately.

Do you fear for your own health and safety, knowing how much James depends on you to survive? Yes. I worry about getting sick and having to go to hospital myself.

When you are asked to provide your job description, and you reply “full time carer”, do you feel as if people are quietly judging you and James? Well in this case I am lucky to live in Tasmania. Before I had to stop work I worked as an assistant nurse in a nursing home – a position which is referred to as a ‘carer’ here in Tasmania. So people assume that’s what I still do.

Despite your complete devotion and adoration of James, on your 21st birthday, what dreams and hopes did you have for yourself at this stage of your life? When I was 21, I was still studying Early Childhood Education so I guess I thought I would be working as a teacher in a long day care centre, and probably have a kid of my own by now as well. I definitely never thought I’d give up work at 26 to become a full time carer to my husband.

When James needs hospitalization, how does it make you feel when hospital staff ask you what “you would do in this situation” or ask you to monitor BSLs?

As James has a very rare and complicated condition, I actually prefer if they ask me what to do – because they mostly have no idea of what needs to be done! This is a bit distressing – but it is unrealistic to think that every doctor and every nurse would know about APECED considering its rarity. We haven’t been asked to monitor BSL’s but I do. I also usually have to remind the nurses to complete all the necessary observations which makes me worry about what happens when I go home.

Do carers have a light at the end of the tunnel to look forward to? Realistically probably not. I like to hope that there is, but for me my job will only end if someone discovers a cure for diabetes, Addison’s disease, hypoparathyroidism, and pernicious anaemia! Carers of children can hope that as the child grows up they will be able to take over more of their own care, or that they will find someone who loves them and will care for them. Other than that the only way a carer will stop caring is when the person they are caring for is no longer around – an outcome none of us want to think of.

Does the average Australian give enough credit to an everyday person who has given up their quality of life to ensure that their loved ones are cared for appropriately? No. And that is reflected by the state of carer payments.

Does the term “carer” equate to “unemployed” in the opinions of some?

Yes.

Professor Robert Cummins (Deakin University) says of the results of his study into carer wellbeing: “We have been doing research in this area for more than six years … and I’m not aware of any group that has ever been found to have a wellbeing score as low as carers”. Professor Cummins also said that the average wellbeing score for Australians sat between 73 and 76, while the average score for carers was 58.5; for those who resided with their frail, disabled or mentally ill spouse, parent or child, the score was 58.4.” What do you think contributes to this? Most carers don’t choose to be carers. They have the job thrust upon them when something causes their loved one to require care. I think that the lack of choice, coupled with the restrictions imposed upon then as a result of caring, result in lower wellbeing. Carers are isolated, and live on a wage that is lower than the federal minimum wage, they work when they are sick, work overtime, and they feel guilty when they take time out for themselves.

When you describe yourself as a carer, have you had the experience where people assume that James is disabled or mentally retarded? As I mentioned earlier people in Tassie assume that I am a worker in a nursing home when I say I am a carer!

How much of your day is taken up by carer responsibilities? All of it. Even when I am doing other things I am thinking about James, what his level is, what he is doing, what he has eaten, why he is quiet, did he have his tablets?, when did I last put his eye drops in and therefore when is he due for more eye drops, did he bolus for the food he ate, is his infusion site working, when does that need changing again?

Do you think James is aware of how much stress, time and commitment is required to perform you daily duties? Yes he is. I try to make sure he knows… in a way that doesn’t make him feel bad about how much stress I feel.

Have you ever had someone flat out disagree with your knowledge of diabetes and how it affects James? Yes. Especially disagreeing with my knowledge. Being a carer in a nursing home was frustrating as the RNs had the final say and would question my ability to treat hypos in the elderly residents. I remember once being on nightshift and having to argue with the RN on duty to perform extra BSL checks overnight on a resident who had just started a new long acting insulin. She refused to believe that I knew anything about the insulin – even though she knew James has diabetes.

When you have concluded reading this interview, Liz has probably performed one of her many duties that so many take for granted. Her mind may be racing with thoughts of how the next hour will pan out. It’s NEVER ENDING. There are no holidays, no time off, no special privileges.. it’s a constant battle against the revolt in James’s body that causes these reactions to occur. At the age of 26, Lizzie is nothing short of a heroine that I have grown to admire and cherish.

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Dealing With A Disasterous Duo- Diabetes And Depression.

In November, 2006, I had the extreme honour of travelling to Canberra with Lance, other children and adolescents with Type 1 Diabetes, their parents and our incredible JDRF Australia staff. We were attending a function called “Kids in the House“, an event that drew national media attention and stained the pristine interior of Parliament House with a chronic illness that is so often misunderstood. By the time we had left, hundreds of fingerpricks had been performed, dozens of real life stories were told, and thousands of tears were shed.

Lance was only 5 years old at the time, and had a blood sugar reading of 23.8mmol/L during the procedings. He was slumped on my lap, his eyes were barely open, and I had to do everything in my power to prevent him from yelling out in frustration during the speeches. Thankfully, he drifted off for long enough so that I could take some photos, and actually clap eyes on the previous Prime Minister, John Howard.

However, my mind was consumed with some of the most powerful and emotive words that I had heard expressed from a young person with Type 1 Diabetes. A then-17 year old teen, with gorgeous dark curls spoke candidly and honestly about an issue that is rarely discussed in association with Type 1 Diabetes.

Gareth Eldershaw opened the eyes wide shut of the parents, politicians and many VIP attendees.

He stood alone, his eyes clearly carrying burdens that you would not expect to see in a 17 year old boy. He spoke about his struggles with a ten year stint living with Type 1 Diabetes. That alone, was heartbreaking, especially when my own son doesn’t know a life without it. However, no one expected him to reveal his devastating and perilous journey with severe Clinical Depression.

Gary’s face was burnt into my mind for the best part of the next week, and the words that he had shared had made me ache with despair for him and his family, AND for the 140 000 Australians who live with the cruel and misunderstood condition that is Type 1 Diabetes.

In recent times, www.whydidtheinsulindie.com has been inundated with parents, carers of teenagers with Type 1 Diabetes and other chronic illnesses and people who are hiding behind their computer screen who are desperately searching for a phrase, or a sentence that they may identify with, or match the symptoms that they are experiencing. I knew that I wanted to emphasize the trauma of depression as well as coping with Diabetes (in particular), because it is so overwhelming, infuriating and debilitating for the sufferer and the caregiver. Two silent, unpredictable conditions that bring out the worst in each other.

I also knew exactly who to ask for help. 🙂

Gary was more than happy to relive his many years living with Type 1 Diabetes, and he had summoned up much bravery and delved into private and difficult territory by talking about the impact that depression has had upon him, his family, his friends, his diabetes and his future. Gary’s mother, Annette, has also contributed to this interview by recalling some of the darkest times in Gary’s battle with the bottomless pit that is depression.

The information that Gary and Annette have shared is recounting a part of Gary’s life that hopefully never resurfaces. It is their hope that by reliving these memories, other young people and loved ones can feel assured that they aren’t alone, and know that there is hope for better days ahead.

Kate vs Gary-waxing lyrical on all things pancreatic, systematic, traumatic, psychiatric…

When we last saw each other I recall that you were 17-ish. How old are you now? 19 years old.

What is your Starsign? November 24, whatever that is. ( Lance’s birthday is November 23, which makes you a Sagittarius!)

Are you still studying? Nearly finished a TAFE Diploma in Performance Music. The Course wasn’t quite what I expected so I haven’t gone back. I’m having some time to get my head together for a few months & doing intensive drumkit practise, preparing for band gigs (One Way Down .. see me on myspace) & doing lots of composition for band & personal satisfaction. I’m really getting into transcriptions of other’s songs.

What special talent do you want to share with the world? (In other words, career hopes?) Famous Heavy Metal Rock Drummer!!!

Do you still have your tonsils? Yes…

Ever tried sushi?? Not a fan…

What’s on your iPod at the mo? Every genre imaginable from renaissance choral music ( I went to Europe last December with my old school choir – sing lots of old music & some contemporary Australian compositions – great fun) also many tens of thousands of contemporary music/songs everything from meditation Enya stuff to Philip Glass to metal (lots of metal.)

I can still see you standing at the podium in the Great Hall at Parliament House. I was seated next to a VIP; she was a Secretary for a Member of Parliament. Whilst you spoke, she clutched hold of my arm, lost all control of her etiquette and sobbed openly, using my dress to mop up her tears! Not that I could see that well, (tears were spilling down my face..,) but there were 10 year old kids, blokey, rugged fathers, cold, pretentious politicians and the beautiful JDRF staff, all seated, transfixed by your every word, all with crumpled Kleenex embedded in their palms. Between the VIP and me, we were both openly weeping towards the end of your speech. For me, my tears weren’t a result of pity or empathy, but more because of your gentle, humble energy and your intense inner strength. Your courage to provide awareness and share painful memories to a roomful of people about depression – and that despite the fact that Lance was asleep, how fortunate he is to have a male role model to admire. Your gorgeous Mum sent me a copy of “the speech” which has again left my eyes hazy…

Kids in the House Speech- 1 November 2006..

My name is Gareth Eldershaw, I am 17 years old and I have had diabetes for over 10 years. Its been 3 years since the first Kids in the House and the message is still very simple. I need a cure for type 1 diabetes. All the kids in Australia who have type 1 want a cure and so do their parents and families and friends.

Diabetes hasn’t just wrecked my life, but everyone’s in my family as well. I have just had my 10 year anniversary of my diagnosis of type 1 diabetes. Maybe that’s not a long time in some people’s lives – but for me it means I just don’t remember back to a time without diabetes. Before I was diagnosed my family had planned a trip to Africa. In the end we still went, but my parents were terrified in case something went wrong. We tried to do cool things like other families but nothing is spontaneous with diabetes, everywhere you go you must take needles, insulin, glucometer, food.

The worst bit is the needles. Over and over day and night. They never stop. Now I am a teenager, diabetes is more of a pain than ever. It is with me all the time. I try to stay positive about a cure coming soon but I worry about long-term complications.

Like all teenagers I have struggled with the pressure of our time, but living with type 1 diabetes and all it involves makes it worse. I really went off the deep end last Christmas.. I developed severe depression and nearly 12 months later I’m still battling this condition, having medication and regular psycho-therapy. Did you know that almost one in four young Australians living with type 1 diabetes struggles with long-term depression? No one wants to talk about this but it’s yet another complication of diabetes.

I’m old enough to really understand and fear the other complications that might come later….

These include: retinopathy, kidney failure, amputation, heart disease, stroke…

Heart disease accounts for 50% of all deaths among people with diabetes

Diabetes is the leading cause of blindness in adults 20-74 years old

Diabetes is the leading cause of kidney failure, accounting for over 40% of cases each year.

Over 40% of people with type 1 diabetes develop severe kidney disease by the age of 50.

About 60-70% of people with diabetes have mild to severe forms of nervous system damage.

People with diabetes are 15 to 40 times more likely to require a lower-limb amputation compared to the general population.

Diabetes is the sixth highest cause of death due to disease in Australia.

Overall, the risk of death among people with diabetes is about 2 times that of people without diabetes. However, the increased risk is greater for younger people.

It is good to know that JDRF are working so hard to find ways to prevent and treat these complications and ultimately find a cure.

But I also have to deal with what happens now. I had a bad hypo awhile back and my brother thought I was dead. Now my parents are even more protective than ever, which is not cool!

What keeps me going is the news that researchers are making incredible advances towards a cure each year. All they need is a bit of funding to keep them going. I know I am standing in the middle of a political arena but this is an issue that goes way beyond party politics.

I don’t want your sympathy, just your support. Support for a cure.

This speech left such a lasting impression on me; I guess as a parent of a child who was a baby when diagnosed, the majority of the public look at him and see a picture of health standing befote them, and they struggle to see where the “health” problem lies considering his robust appearance.

However, I look at my son, and I see the blood samples that are collected from his arm every three months, the visits to the optometrist that leave me physically ill, waiting for the doctor to speak after thoroughly looking into Lance’s eyes in case he finds “a bleed.” I hold his hand, and feel his calloused, scarred little fingertips. I am constantly thankful for the lifesaving properties of a glucagon injection after a severe hypo. When his blood sugar is back to normal, we usually go through 24 hours of fierce headaches, light sensitivity and vomiting that almost always requires a drip, as he becomes terribly dehydrated. The morning I found him cold and blue in his bed at just under 3 years of age; he had slept through a severe hypo. Out trip to Canberra made me feel like we belong to a “Society” that knows all too well about complications, the stigma attached to having to prick your finger and how a drop of blood instills fear into ignorant folk, thinking that a blood borne disease could be contracted by sitting near a child who has Type 1 Diabetes. The stigma of depression is real and blatantly considered to be a “take a pill and it will go away” or ” You just need to remember that there are so many people worse off than you” brush off. Who wouldn’t be depressed at having to go through all of these procedures and knowing that you could be blind in your 20’s, have a heart attack in your 30’s..it’s a condition that constantly eats away at you. It’s difficult to hope for the best, because the best is so far away. The worst is already happening for Lance, and for you, regarding complications. It is fantastic to see surveys about being a carer circulating, and organisations such as Beyond Blue are recognising the difficulties associated with the upkeep of a chronic disease, and fighting off long term depression-finally a step in the right direction.

When were you first diagnosed with Type 1 Diabetes? May 15 1996

Are you on insulin injections or do you have an insulin pump? 3rd pump so far over 5-6 years . I had injections for first 6 years and HATED every one.

Is your endocrinologist a happy little camper at your 3 monthly visits? I have just started seeing a new guy (endo for last 12 years just retired). I have been very lucky compared to some peoples’ stories. My old endo was always encouraging, he never said I was “bad” –it was always “the best we can do at the moment” even when things were terrible or my HbA1C was 11.3 (just before I started on the pump). The new Endo was good at first visit and is also encouraging already.

How long have you been a JDRF Youth Ambassador? Since around 2001.

I know your fam are amazing fundraisers…do you get involved in any projects as well, such as Walk For A Cure? Every single one. Dad says it’s a sacred day for the family & everything else gets cancelled so we can go. Im supported by IBM (they have supported Youth Ambassadors for many years now) & Boral. I try to help as an ‘adult’ (!) now by handing out prizes, selling raffle tickets and the like. I’m usually involved in some media promotion too– radio or TV/film at the walk.

(Annette) When he was little, Gareth was always amazed that he couldn’t tell who had type 1 diabetes in the huge crowds. He thought it was funny to see so many glucometers at lunchtime though! We encouraged the event greatly as we felt Gareth needed to see that there were so many other quite “normal looking” other people that just happened to have type 1 Diabetes.

I speak at every JDRF Ball (been 4 so far) to get more support from well heeled corporate blokes – I love ’em all, even though they are so much older than I; they treat me like an equal-crazy!

At what age or time period did you find Type 1 Diabetes become a social hinderance? To tell the truth, I can’t really remember. Obviously having it at a quite young age it is hard to remember the exact details of the situation ,but it pretty much became obvious to me as I started to get older and learn more about the disease, the more things I had to actively think about and try to take care of as best as I could. Sure, I had Mum at home and at a lot of the places I went, as you do as a littley, but she wasn’t always around to give a hand at school during the middle of the day for example. Problems would often come up and every day was a new challenge for me.

Were you pretty open about telling people that you had Type 1 Diabetes? Yes and No. I can talk to some of my close friends openly about it, but then again there are still some friends I feel awkward about talking to. I’m not exactly sure why, it could be that it’s something i don’t feel the need to talk about or whatever, but i really dont know. People around me should know, so they can have a vague understanding of what sort of situation I’m in, but it’s also up to me to be able to take care of myself and not have to have them worry about it/have to think about it everytime I’m with them. It’s not really their ‘job’ because in theory i should be all good, but sometimes things don’t turn out so great. I’m very grateful for my friends’ concerns and that they do understand. Not everything is so simple though….

When you had episodes or bouts of depression, would they flare up and then die back or were they there, big and black all the time? Full blown all the time, I couldn’t get away from it.

Did you have any obvious symptoms that indicated that you were a candidate for depression? Well, I guess I wasn’t the one who noticed it because it came on as a gradual thing, sort of like growing, it’s always the grandparents or someone like that who notices and not yourself . But i guess my family were a little concerned with it to start with, i don’t remember a lot of it because it was just such a dark time for me, but my friends noticed too. Some tried to talk to me about it, but being your typical arrogant teenager at the time, I told them I could deal with it or nothing was wrong, which is pretty much the total opposite of what was happening.

(Annette:) I could write a book about this now! He’s right – parents were about the last to admit (see) the symptoms – it’s pitiful now in retrospect – embarrassing to say you were the parent – we need so much more educating! I feel/felt such a failure.

When you were diagnosed with depression, were you initially shocked/angry/upset/? You could say I was upset, but then again i was upset the whole time I was going through it. Everything I looked at, I saw the negative side to it, even if it was something like the blue sky, i just couldn’t handle anything or even understand what was going on properly.

So, whilst dealing with this, was it tough looking after Type 1 Diabetes continually demanding attention from you all day long? It was a challenge in the fact I totally stopped caring, even if I got sick, felt terrible, made it hard for people around me, whatever. I was completely blind to everyone around me trying to help me, but also to the fact that I had so much support that went unnoticed by me because of such single mindedness, and not caring about anyone. It made more work for everyone around me too, having to do what I should have been doing myself but wasn’t, even the simplest of tasks.

Your family are an amazing support network to you. Did anyone click that there may be something wrong, or did you have to tell them how you were feeling? The former, i had no idea in the world what was going on til it was too late. I was taken to psychologists and psychiatrists and God knows who else..one after the other, to try and sort the problems out. Same with the medication, I started to hate it too, I didn’t think I needed it so I’d not take it for days on end and that would cause more havoc among the family.

Did you have a supportive medical network? I still do to this day.

Is there one particularly dark moment (more so than others) that you remember whilst suffering depression? There is no solid memory i can recall, but there’s enough fragments to last a lifetime…

You’ve tried both medication and counselling. Was it really difficult to have to wait up to 6 weeks for a tinge of improvement? It was hell, yes, I tried both the medication and the therapy/counselling but I didn’t feel it really helped (even though it obviously has..) The medication was ridiculously slow to actually have any noticeable effect on me so I didn’t think much of that. The counsellors trying to help- I thought they were just like little machines that had a response to every answer I could think of, or any question I had. None of them except one, had a good run with me I don’t think. They didn’t seem to help anyway.

When did things first start improving? About when I finished Grade 12. I got away from everyone and everything, I wasn’t really cut out for being in school because I hated the place to death, but I stayed for the sake of it. When the time did come around, I felt a huge weight lifted from my shoulders, but also the fact that I could almost ‘start over’ . A whole new world opened up for me so i guess im lucky in that sense.

You sound like you are strong in spirit at this moment. Is it true what they say about “you’ve just got to give it time…?” As much as I know anyone who is in the same position as I was doesn’t want to hear this and will probably just ignore me for saying it, time is life. There’s no quick and easy way to just ‘fix’ it, its not really like a car and if something’s broken you just mess with it for a while and it will be fixed, its something human and living, you can’t get around it.

Can you suggest what somebody experiencing any of what you have been through should do first? Talk to those around you, and tell somebody how you are feeling. It may help rather than an outsider’s assistance..

What about if you notice symptoms in a school friend?? It’s hard to notice at school because there is so much going on…,someone could be in a terrible state, but everyone may think they are stressed out from exams…or a detention later that day….or whatever the reason may be. If you CAN, talk to the person you are concerned about, if you can’t, find someone who can..it may be just enough to stop them falling apart…

If I could give you two tickets to any band/singer in the world, who would you go and see, and who would you take with you?? That’s a terribly hard question for me to answer! There are so many bands out there right now that I’d love to see..a LOT come to mind but if I could pick ANY band in the world and be able to give the tickets away, I’d give them to a few close friends of mine and let them enjoy the time, with the band of their choice. I find supporting friends/family is one of the greatest things a person can do for them.

If you are feeling any emotions or having moods that sound similar to what Gary went through, OR if you are concerned that your child may be depressed, there is help close by until you get a medical opinion.

By contacting any of these organisations, you will be taking your first step to helping yourself.

Beyond blue
www.BeyondBlue.org.au Complete our checklists to get an understanding of depression/anxiety

Kids Help Line – 1800 55 1800

Kids Help Line is a free and confidential, telephone counselling service for 5 to 25 year olds in Australia. www.kidshelpline.com.au/

Pfizer Australia Health Report – Depression and Chronic Illness
File Format: PDF/Adobe Acrobat – View as HTML
Living well with chronic illness. and depression. The SANE Helpline1800 18 SANE. (7263) is Australia’s only national. Freecall helpline providing
www.healthreport.com.au/Reports/32.pdf

Lifeline Australia – Lifeline Information Service

The Lifeline Information Service provides access to a variety of self-help tool kits with information about issues such as mental illness, depression,
www.lifeline.org.au/find_help/info_service

(Annette) “I’m not sure Gareth understands the power of his presentations yet; he just thinks it’s what he needs to do to help. At the time he was still “in” the depression & lots passed him by. For example: A few weeks after Kids in the House, he went with the Band from school to USA & Canada (I went too) – he doesn’t remember more than 10 minutes of the whole 3 weeks – such is the power of anti-depressant medication (especially when it’s not the right one). Hell continues …

I offer my heartfelt thanks to Gary and Annette Eldershaw, for sharing the living proof of how depression can appear from nowhere. 1 in 3 Australians will suffer from depression at some time in their lives, however, I tend to think that it affects every person-the real difference is the varying degrees of severity in each case and how it affects your overall wellbeing. If you are suffering from a Chronic Illness other than Type 1 Diabetes, you feel like your quality of life is suddenly impaired, and you feel entrapped and unable to embrace life as you once did, the above contacts are all excellent in regards to putting you on the right track. Once you know what you are dealing with, your medical support team and family will want to assist you in any way they can.

I am concluding this interview with an excerpt from a speech that Gary wrote and delivered at a fundraising event last year. His family are so devoted with helping him regain serenity once again. After all, he is a young man, who through no fault of his own, has missed out on having a happy, carefree childhood, and then to ice the cake, his teenage years have been laced with misery as well. Any chronic disease plus debilitating depression thrown in for good measure is a devastating combination. The excellent news is that you can recover from depression. It can be a rocky ride, however Gary Eldershaw is a perfect example of a young person who refused to give up on himself, and how the love and support of his family was paramount in pulling him out of the murky swamps he was embedded in. Today, he still lives with Type 1 Diabetes, but he has learnt to be Gary again. He is living a tranquil and relaxed life. The chaos is over, hopefully never to return.

An excerpt from Gary’s speech, delivered at the JDRF Gala Ball, 2007.

“We all had our lives and our families shattered by those 3 little words …”you’ve got diabetes”.…….. From that moment on our lives have been consumed by the relentless barrage of insulin injections ….just to keep us alive (remember that insulin is NOT a cure)…… Relatives and friends are constantly watching over us to make sure we eat food at the right time,….. don’t have a hypo,…….. and have our injections ……..and lots more.

At the last JDRF Ball, I told every one of my very personal hardships and recent complications of type 1 diabetes, of which one has been a struggle with severe depression…. Since then I’ve attended a symposium where people with diabetes were able to anonymously give details of their complications and fears……. Guess what….. I’m not alone…….. But few have been prepared to speak out or even have the opportunity to speak out.

Despite medication and psycho-therapy I have suffered several more depressive episodes since then…… I have the physical scars on my body of my attempts at self-harm……. I will have them for a long time … as a constant reminder of this dreadful disease….. As if all the needles were not enough of a reminder!”

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Is It Safe For Me To Get A Facial Piercing With Type 1 Diabetes?

“I want to get my nose/eyebrow/lip pierced..”

“You can’t!! Not with your Type 1 Diabetes!

That’s the immediate response most people who have knowledge about Type 1 Diabetes would give!  I am often asked by teenagers and parents alike if it’s safe to get facial adornments. To be really honest, I don’t have a concrete answer. I decided to investigate whether the truth about the high risk factor associated with Type 1 Diabetes and facial piercing is a fact or a myth.

tongue piercing

There have been some horror stories and even fatalities that have circulated around for a few years now about the risks of facial piercing. Most doctors would highly recommend that you avoid the appeal of getting a piercing if you have Type 1 Diabetes.

However, I had a tete-a-tete with a friend who lives with Type 1 Diabetes, and  recently experienced getting her nose pierced.

Robyn, a 17 year old student, was diagnosed with Type 1 Diabetes 3 years ago, a few weeks before she was due to commence boarding school. She has experienced the rollercoaster ride that most newly diagnosed kids endure-the highest of highs, and the lowest of lows. A year later, she started insulin pump therapy.

This evening, we had a tete-a-tete about what happened when she bit the bullet and had her consultation and appointment at a piercing studio.

Robyn! Thank you so much for helping us untangle one of  life’s little mysteries!

(Robyn) “That’s okay. I hope it helps people decide if piercing is for them!”

You obviously knew that you wanted to get your nose pierced. Did you consult your doctor first?

((Robyn) “No, I didn’t.”

You chose a highly reputable piercing studio. Did they provide any precautionary advice?

(Robyn) “Yes they did. They did not know I was a diabetic, yet they even mentioned that there were risks associated with piercings and uncontrolled Type1 Diabetes. My piercer went into great detail about how the healing process will be lengthy and the chance of infections are high in a person that often experiences high bsls and HBA1c’s.”

Speaking of which, how is everything going with your levels?

Oh really good. My last HBA1C was 6.9% and I have lost 2-and-a-half kilos since my last bloodwork.

Wow! That’s amazing! So I take it that and your pump are great friends now !

Most definitely. I had to go back on injections for a week whilst I waiting for a replacement pump..I’d forgotten how horrible it was, and my readings were terrible. I was so glad to have my pump back!

Well! That’s impressive that they went into thorough detail about risks regarding Type 1 Diabetes!  I am unpierced myself, so you’ll have to tell me if it was as agonising as it looks…

(Robyn) Ohhhh I can’t remember a lot from just before he did it until after it was done. It hurt a lot! However, once it was in, the pain subsided (for me anyway!)

So what kind of aftercare did they provide?

(Robyn) Well they said it would take 20 minutes for my nose to close, and I was amazed at how quickly it healed. They were really meticulous about being very aware of reporting any severe pain, inflammation or any changes to the area, like discharge even in the middle of the night. . I had to wash it with a special antiseptic lotion everyday, and leave the trainer stud in for the first couple of weeks.”

So, basically, would you say that from the information that you were given, plus your own personal experience-your Type 1 Diabetes is under tight control, and you followed the strict advice of the piercer to pay special attention regarding hygiene -that it is safe for a person with controlled Diabetes to get a piercimg?

(Robyn)” Yep. That’s pretty much nailed it on the head!”(Hmm..nice wording..)

Thanks  so much Robyn, for sharing your experience, I’m so glad it went well for you! Your information will also help other people decide whether they are a suitable candidate for facial or oral piercings.

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After speaking to one person who had a successful experience with a nose piercing, and after researching the danger associated with Type 1 Diabetes, I would definitely recommend to anyone thinking of getting a piercing to:

  • Look and ask around for someone with experience and an established reputation. ( Anyone can purchase a $300 starter kit and set themselves up a business!)
  • Be aware that no matter how experienced the piercer is, there is still chance of danger regarding infection or cosmetic damage. Look for discharge, swelling, redness; be aware of feeling generally unwell, nauseous or feverish and be meticulous with the recommended cleansing routine .
  • Be more vigilant with finger pricks for a few days, repeated results that are high for no particular reason should be reported to your doctor or health nurse straight away.
  • Have a card in your wallet stating that you have Type 1 Diabetes, and where your piercing is located-( not all are visible!!)- in case you are admitted to hospital for any reason, just so the staff can remove the jewellery.
  • Be aware that once you have a piercing,  you still have to maintain good hygiene (rotating the ring/bar often) for as long as you have it. There is still risk of infection even after the piercing  is completely healed.
  • IF YOU ARE THE LEAST BIT CONCERNED, contact your GP or HOSPITAL IMMEDIATELY. If you are feeling unwell, feverish, or the tissue around the site is hot, red or throbbing, you could quickly develop a life-threatening infection that can be halted by immediate treatment. Do not wait until your doctor opens the next morning, get straight to the Emergency Department of your nearest hospital!
  • Ensure that your piercer is gloved, and only uses individual, sterile, sealed needles. Needle Guns are a HUGE risk for infection. They are difficult to clean properly, and expose other clients to blood borne viruses.
  • Talk to your GP before your appointment with your piercer, and suggest starting an antibiotic before the procedure. If they agree, it’s smart to continue the medication until finished, just to enhance healing and avoiding infection.

There are risks associated with any facial or oral piercings. Having Diabetes doesn’t mean that you can’t have one, you just have to ensure that your overall health is in excellent condition, and that you are prepared to put in the effort of keeping it clean. Personally, I would suggest daily doctor checkups for a few days after getting a piercing, for your own piece of mind, and so that your doctor knows that you are safe and well.

*This report is based on the findings of research, and from the personal experience of an individual with Type 1 Diabetes. Talk to your parents and GP so that they can help and guide you to make smart decisions.*

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James And The Giant (Hearted) Pooch/ Type 1 With A Twist

James Yarker has managed to have many adventures in his 23 years.

He is a husband of two years, to the ever lovely Liz.

james-carbi-aramis-and-liz.jpg

 

He is an assistant nurse/carer in a 86 bed nursing home/hostel.

He and Liz have recently relocated to Tasmania, and are settling into their new home with their two assistance dogs, Aramis and Carbi.

His depth of character is rare in such a young chap-he has many endearing attributes that definitely place him in the category of ‘new age gentleman.’

Oh, and speaking of rare, James has an extremely rare autoimmune condition known as APECED-an acronym for Autoimmune Polyendocrinopathy Candidiasis Ectodermal Dystrophy.

There are many disease associations related to APECED.

James suffers from quite an impressive variation of autoimmune illnesses associated with this condition, one being Type 1 Diabetes.

I can at least relate to James on this level, as my own Lance has racked up five years of the condition. We recently spoke about all things IDDM. Here is his courageous and inspirational story about how his life has been affected by an especially horrifying experience and the wonderful “gift” that gave him hope and courage whilst living with Type 1 Diabetes.

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James, you had already been living with some of the other autoimmune conditions that are associated with ACEPED. When were you diagnosed with Type 1 Diabetes?

“I was diagnosed in 1998 at the age of 14.”

When did you start on the insulin pump?

“I was on injections until the 18 July 2006.”

So, hit me with five adjectives to describe who James Yarker is at this present time in your life?

“compassionate…..considerate…..adaptable…..professional …..Semper Fidelis” (translates to ‘always faithful’ in Latin.)

I’m going to say a word, and I want you to say the first thing that enters your mind.( No pressure now…)

hospital?….again”

tubing?….“ouch” (it gets caught on stuff)

marriage?….“security”

blood?….“essential”

insulin?….“syringe”

work?….“tax”

family?….“home”

relaxing?….scotch”

happiness?….“laughter”

luck?…. “make your own”

misery?…. “solitude”

immune system?…. “shot”

Coke?…. “refreshing” (Diet Coke)

headache?…. “hypo”

frustration?…. “incompetence”

food?…. “delicious”

money?…. “important..but not essential”

 

Bravo James! OK…what was your best subject at high school?

“Wagging…that’s my final answer.”

What was the last film you watched that left you moved or shocked?

“Fight Club.”

What’s your favourite charity?

Beyond Blue..but there’s too many! I want to help them all! SIDS, Alzheimers, Mental Health…”

So, who would you rather meet? A mermaid, or a princess?

“A mermaid…I love the water. I am a Pisces afterall!”

Do you have an exercise routine or a sport you play on a regular basis?

“No, walking around work tires me out, My heel hurts too much to play sport…or anything that requires a lot of walking.

Obviously, the worst hypo you ever had was when you were injured in a car accident?

“Yes.”

This was somewhat of a one-of-a-kind accident. Are you able to share what happened on that dreaded day?

It happened on the 4th November, 2004. I was working as a pizza delivery driver. I had a hypo at the shop and ate a large pasta, had soft drink, a popper…heaps of stuff. Then I loaded the car up and was driving around, delivering the pizzas. I remember feeling low, so I pulled over. There were no stand out hypo symptoms though. I can’t remember checking my level or anything but I do remember calling Liz. I can’t remember what we spoke about…I don’t remember starting the engine again and driving off. I just remember feeling lost and like I didn’t know which way to go, or where I was going…”

“I remember hearing the crash, didn’t see anything, just heard it all. I remember waking up with lots of bright lights and noise, and people speaking to me. I remember looking around and seeing all of these faces..I didn’t know WHAT was happening.

Then I saw Liz. I was relieved and worried, relieved I wasn’t dead…”

car-accident.jpg

Besides breaking your heel bone, did you sustain any other injuries?

“Well…apart from my pride being damaged…I had a couple of broken ribs, a really bad sprained ankle, one cut on my arm and one on my leg, and bruising on my legs from the steering wheel collapsing..”

Was that from the impact of the crash?

“Yes..”

I really appreciate you reliving those horrible memories for the sake of this interview, James. That’s when Liz decided that nothing like that must ever happen again, and she went on a crusade to find a way to keep you safe when you were on your own. She began searching on the internet for tips and ideas…

“That’s when Liz found Paws for Diabetics on a Diabetes forum in April/May 2006.”

So, moving right along, it wasn’t long after that one adorable Carbi Yarker was welcomed into your home! When you first met, was there an immediate bond between you both?

“Yes, he snuggled up in my arms and let out a huge sigh…”

james-and-carbi.jpg

In every photo I see, Carbi is smothering you with love or vice versa. Does his devotion help you with the constant burden and worry of health woes?

“Yes, he is like….a refuge.”

So tell me about Carbi!

He’s 1 year and 4 months old, his breed is a Chinese Crested Powderpuff. When he was smaller, he used to come to work with me at a nursing home I was working at. It was hard though, because I couldn’t give him the time or the discipline. He was becoming a bit of a novelty to the patients…

Carbi the Pup

He is naturally cheeky, cunning and playful. He will wait for you to leave the room and eat your food and drink your coffee and when you come back he will be on the other side of the room licking his lips..”

Is there any foods that you purposely avoid because they play havoc with your blood sugar?

“Diet Lemonade makes me low.”

Really?

“Yes really! Passionfruit also makes my levels go up.”

In ten years time if there was no concrete cure, what would you be hoping for in terms of how you would continue receiving insulin?

“Pump with continuous blood monitoring, and a way to infuse insulin without risk of infection.”

Finally, if you were to have a healthy, functioning pancreas after all this time of being islet cell challenged, what would be your ultimate feast, and which three people would you invite? (One member of family, somebody that you admire, and a celebrity.)

“Entree- Crudites…Main-Mexican (nachos, burritos,)….Dessert-bolied fruit cake with brandy custard.”

“My guests would be:

My Lilly…(James’s pet name for Liz)

Your Lance…

And the cast of NCIS, including Kate, who isn’t in it anymore.”

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A huge thank you James, for sharing all your information regarding life with Type 1 Diabetes, and for allowing this information to be published.

If you would like any further information on APECED check out http://jimneydandme.wordpress.com/. This site is jam packed with information about the condition, and how it has personally affected James, and ultimately Liz.

To see James and Carbi’s adventures and meet the rest of the family, go to

www.hypodogs.com

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Type 1 Diabetes in high school:16 year old Chelsea reveals her highly personal feelings about her daily stuggles and challenges.

Yum…Chocolate Cake to celebrate getting my insulin pumpLast July, Lance appeared on the cover of a large newspaper, asking the community to help him find a cure for Type 1 Diabetes.

After the story ran, I was delighted to receive a forwarded email from the journalist. It was from a recently diagnosed teen who was looking for a local support network. I immediately contacted then 15yo Chelsea, who was juggling senior studies, Type 1 Diabetes as well as attending a boarding school 2 hours away from her family.

It was a pleasure to catch up with Chelsea again to find out how her impressive juggling act was going!

Hello Chelsea! Thank you so much for agreeing to be the subject of our first interview!

“Thanks, Kate. I am currently on school holidays and trying to fit in some quiet time as well as working a few hours, and also sorting out a few health issues. It seems I have become insulin resistant which has caused me to have had a tough Term 3 at school.”

That must be causing havoc with your readings and general wellbeing!

“Yes, I have been waking up feeling like I haven’t been to sleep at all. I am always really high after breakfast and insulin. I’m going to have to wait until November to see an endocrinologist who will hopefully be able to sort things out so I can get my life back! That’s the deal in Queensland at the moment; private or public patients who need to see a specialist simply have to wait their turn, no matter how urgent their situation is!”

So you are 16 now and in Grade 11 in South East Queensland! Are you still using the” old school” injections with insulin pens, or have you upgraded to the insulin pump?

“Not as yet! I am still using Novorapid and Levemir in the pen form. My last HBA1C blood test was 6.7, which according to the doctors’ is fantastic, therefore I am having a battle to get them to understand that I’m feeling terrible a lot of the time! My levels are swinging from high down to low, which isn’t good for the body long term either, and insulin pump therapy has proven to be highly successful in keeping levels as close to normal as you can get. I am counting down the days until my my appointment in late November.”

So you have just passed your two year milestone!

“Yes, I was diagnosed in April/May 2005.”

Have you introduced your glucometer to your friends at school?

“I sure have! It was christened at school and it’s name is ‘Betsy the Beast.’ It even has it’s own name tag.”

So, despite feeling unwell regarding what is going on with insulin, tell me some adjectives that desribe you at this point in your life?

“curious….content….independent….fortunate….active…”

What’s your favourite charity?

“The Starlight Foundation.”

Each person with Type 1 has their own unique complaints, or foods that don’t agree with them. Is there any foods that you have had to give up because it’s not worth the discomfort or nasty reading later??

“Breakfast cereals, and yogurt.”

When was the last time having Diabetes made you feel frustrated or angry in a social situation?

“Yesterday! I was at work and a staff member said in passing.. ‘My Mum said I’m going to get Diabetes because I have waaaaaaaaay too much sugar’. There has also been occasions where people at school will say, ‘Gee, I wish I had Diabetes, you can eat whatever you like!! ‘ It really gets to me.

Oh I know! I’m not even a person with Type 1 Diabetes, but from time to time, people direct their ignorance at me, not Lance, and I often leave situations battered emotionally…

“People don’t understand that this condition affects us in everyway.. sport, school, concentrating, emotionally, socially, eating…you are constantly having to make smart decisions and there is never a moment where you can relax..”

Ok, so what about laugh-out-loud Diabetes moments? We have plenty of them as Lance is six going on forty five, and he is a naturally humorous person anyway… ,

“Well, when I am sleeping and go hypo, I often have totally weird dreams. I remember clearly one time I was dreaming I was on the school oval at our athletics day, and I was about do the 1500 m . I just happened to look towards my left, and as the gun went off, i realised that I was was racing with a huge apple juice popper!!!”

Chelsea, imagine in ten years time there is still no cure.. what would you be content with in terms of how you get your insulin administered to you?

“I think for me, one needs to be realistic here. So, if great advancements could go ahead with the pump, like the introduction of a ‘closed system/loop’ consisting of a pump reading bsl’s from a continuous bsl monitor (a more advanced model of the one available with the Medtronic pump) and then adjusting my insulin accordingly..well that would be awesome…something a bit more reliable and advanced than the pumping systems available at the moment.”

Your dear Dad had Type 2 Diabetes. Any auto immune-y type conditions in your immediate paternal and maternal families?

“No..not that I know of..”

So are you of the opinion that pumpers have things a whole lot easier than “old schoolers?”

“Well if you are prepared to put the effort into having a pump, then you could say that pumpers are indeed very lucky. However, pumps don’t eliminate the fact that you have Diabetes, so they aren’t without negative aspects.”

What would be your celebratory feast if by magic, your pancreas started to produce insulin again?

“Indian food..with lots and lots of rice!”

Where is your first port of call when you finish Year 12? Any countries you have a passion to see?

“My friend and I are heading off to England to become boarding school supervisors at a boarding school for a year, and during school holidays (when we are free!!) we plan to head to head to France to better our fluency of the language, and also indulge in some snowboarding. When I return, I’d like to go to the Northern Territory for a few months on a cattle station, before heading off to commence University studies.”

Since being diagnosed, have you found that paediatricians, diabetic educators and your endocronologist have provided you with enough support and advice with how to cope with being away from the comfort zone of home, and helped you understand your condition well?

“No, not really! If it wasn’t for forums and internet support groups, I would be in a dangerous situation. I am also a member of JDRF , their quarterly magazines are great as they give me an insight as to what is happening in terms of progress towards a cure in other parts of the world. Being the only person with Type 1 Diabetes at my school makes me want to keep a low profile. My friends and teachers know I have Diabetes, but they have no idea how much my day entails. I have the ability to vent through the JDRF Mentor Program about my frustrations, but really, when I go to school each day, I honestly can say that I walk out of the boarding house knowing how incredibly lucky I am to have to health that I do. I keep inside how I am feeling because most days I am feeling pretty tired because of the problems I am having with oscillating blood sugar levels after breakfast due to insulin resistance. I feel incredibly lethargic but go to school and go along with my day as if nothing is wrong.”

Chelsea, you are incredibly mature, wise and have a fantastic outlook about type 1 Diabetes, which, let’s admit can be straight out annoying to incredibly frightening. You are definitely an inspiration for others who are diagnosed in their early teens to keep on living and fighting.

“Thank you, Kate!”

Well, on that note, I’d like to thank you on behalf of Lance and myself for sharing really personal information about a lonely and difficult condition. It would be great if we could catch up with you again in November to see how your appointment went, to keep track of how you are feeling, and to see if you get the go ahead to be a pumper! Thanks again, Chelsea!!

(If you were touched in anyway by Chelsea’s story, it would by super if you could leave a comment or words of inspiration in the space below! It would be very special for her to read them!)

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