Archive for June, 2008

DAMMIT Diabetes…..

Just wanted to let you all know that I am still alive, but I am terribly sad.

Lance got some blood work back that was “concerning.”

We have more tests this week-it appears that his kidneys are excreting lots of what they shouldn’t be. I don’t know which kidney, or if it’s both..hence the reason for further urgent testing.

Nothing can ever prepare a parent for the day when your endo, whom you know so well you consider a friend, can’t look you in the eye whilst giving bad news. I had already caught a glimpse of the results, the numbers marked in red with ABNORMAL emblazoned across the page. My heart was racing double time. I studied his face, searching for an explanation, only to have him plant his eyes into the ground, whilst he spoke.

Anyway, I can’t write too much more. I just wanted to feel like I hadn’t lost touch with the world. Diabetes 24 hours a day is very consuming and toxic. I needed to know that you all are still soldiering on.

As soon as there is some news to give (Tuesday EST) I will certainly post to let Lance’s friends’ and family know his health status and what the future holds.

“But he looks so healthy!!!” a Diabetes Educator exclaimed as she read the endo’s scrawl. She was organising urgent tests/appointments for this coming week. I looked at her incredulously, and silently walked out of the room. His little hand pressed in mine.

The rest is a blur. Just trying to get through minute by minute at the moment.

Ironically, last night, Lance said to me ” Mum, if they could take Diabetes out of my body and put it in yours, I would forbid them to do it.”

“Why sweetie?” (I have always told him, if i could, that I would swap our situations in a heartbeat.)

“I can handle Diabetes, and somehow, I don’t think you would do too well.”

How can someone so young, get it so right?

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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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JDRF Australia Joins FACEBOOK.

There are many groups that are available to people with diabetes, parents with a child who lives with diabetes, or simply offering support to an organisation devoted to Diabetes on Facebook.

Up until now, I have recruited members to JDRF International and I am a proud member myself.

However, I am even more proud to announce that our pet charity, JDRF Australia has just set up their own group,that is devoted to providing and receiving support on Facebook!!

Juvenile Diabetes Research Foundation Australia

http://www.facebook.com/group.php?gid=9522514959

Why not show your support by becoming a member of JDRF Australia?

Lance is a passionate and devoted member of JDRF, and has raised almost $6000 in the past 3 years through selling Jelly Baby Merchandise each May, and providing donated prizes to the Annual Brisbane Gala Ball. He is also somewhat of a media star -he has passionately spoken to numerous journalists and radio announcers. His heartfelt and beautiful words have melted the hearts of our community. Many people of all ages have emptied the change from their wallets and contacted JDRF Brisbane, asking how the can make a contibution on Lance’s behalf!

 He is so proud of his title and role as a JDRF Youth Ambassador,  He wants to help find a cure not only himself, but for all people who have Type 1 Diabetes.

You can support Lance personally, or the other 140 000 Australians that suffer from Type 1 Diabetes. Simply click on this link below, and show your support to the organisation that provides the very best research and funding to scientists in Australia.

http://www.facebook.com/group.php?gid=9522514959

Considering it is also approaching the end of the financial year, you may like to make a donation to JDRF Australia. All donations over $2 are tax deductible. JDRF will happily provide you with a receipt to include with your tax paperwork!

Since Lance was diagnosed almost 6 years ago, there has been much progress made, and we are so much closer to finding THE CURE. This could not have been achieved without the kindness and generosity of people who want children like Lance to lead a life without injections, fingerpricks, following a restricted diet, long term complications and ultimately, never experiencing a real “childhood.”

You can also leave a message or an enquiry on the JDRF Australia Facebook Group, and a member or advocate will be delighted to provide advice and share their experiences.

If you know someone that could benefit from joining the JDRF Australia Facebook Group, please pass the link onto them. To our many international friends and readers, if you wish to say G’Day to the fantastic group of people who have given us hope and love, and instilled courage and confidence in Lance, it costs nothing to become a member of the group. It costs nothing to leave a comment. We would love to hear from you!!!

Any donations go directly to providing the best research in the country. You can even find out how to become an exclusive member of JDRF Australia via the Facebook page!

The page was established only one day ago, and it would be a fantastic to see member numbers rise from Why Did The Insulin Die readers, and friends of Lance 🙂

He is one little boy who is determined to make a difference.

Your support and assistance is always appreciated.

Love and Jellybabies!!!

Kate (JDRF Australia Advocate) and Lance (JDRF Australia Youth Ambassador.)

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“I Heart Guts”-Learn To Laugh At Your Misbehaving Organs.

I have a list of humourous diabetes-related slogans that I endeavour to print on t-shirts…that’s a dream for when Lance is a little older, and the current dramas of oscillating BSLs and waiting-for-the-pump become issues of the past.

On a particularly miserable Monday morning, my extremities were about to snap. Yes,despite living in a sunburnt country, we happen to reside in a notoriously cold city, known for its westerly winds and early morning frosts.I had just muttered a list of expletives as I tiptoed across the icy floorboards to grab Lance’s insulin. The reason being that my 2am bsl check that I perform on Lance nightly flashed an offensive 19.5mmol/L at me. I couldn’t believe it. He was 7.7mmol/L before we went to bed. I began assembling the insulin pen it so I could administer the life-serum to my sleeping son. Before I left the kitchen, I held it at eye level, whilst checking for air bubbles, and said out loud, ” Pleeeease do your job, you’ve been terribly slack lately!” in an exasperated, pleading tone.

The insulin was delivered into a perfectly exposed spot on Lance’s tummy, thanks to a button that had come undone on his Tranformers pyjama shirt. I was thankful that I didn’t have to put my icy hands on his warm little body. I was too wired to go to sleep, so I plotted a few days blood sugar trends on www.sugarstats.com. All done. I googled the word: “pancreas” just for the hell of it. I had already had a conversation with an insulin pen, found myself drumming out the rhythm of the theme song that gets so much airplay at our house-…Transformers, more than meets the eye..” with two innocent pencils on a stack of books, so why not look at a bunch of pancreas pics whilst I was at it? I mean, I know it isn’t standard 2am behaviour to engage in, but after the craziness of the past weeks, it made sense that I appeared to be somewhat delirious.( My only witness was our devoted whippet, He isn’t going to tell anyone about his Master’s mother and her early morning cuckoo antics…)

The nights events came to an unexectedly hilarious peak when I discovered this.

I was so intrigued to see such creative and hysterical use of a pancreas! I chuckled quietly to myself as I read on. The folks at www.iheartguts.com are devoted to making internal organs come to life with snappy little catchphrases, and their products are perfect for those with a troublesome condition that is usually wrapped up in a stockpile of seriousness and only ever mentioned in hushed tones.

 They boast an impressive range of t-shirts, featuring all of your favourite organs for men and women. (Lance is getting the “Gimme Some Sugar” shirt in a ladies Size Small.) They have stickers, pins and even plush, colourful replicas of your sick, tired, or damaged organ, all with a guaranteed belly laugh or two.

 Why not give his pancreas a voice? It may as well be used for something..

Ha. I just imagined a sad little pancreas with a weather-beaten, six-year-old “For Lease” sign stuck in the middle of it. The humour is rubbing off!

For anyone who has problems with their liver, pain from their kidneys, a literally “broken” heart, a devastatingly vacant uterus, synapses that are slightly askew in their brain,or a spleen that is more trouble than it’s worth, you must visit www.iheartguts.com , even if only for a good old-fashioned guffaw. (However, something tells me that the uber cool design, plus the given ability to have a laugh about your imperfect organ, and the passion shown towards guts in general will find you with your credit card in hand, ready to purchase a rib-tickler. It worked first shot with me!

I’m tired of Diabetes being so serious and overwhelming. I caught myself frowning in the mirror recently, and I actually gasped aloud at the deep folds of skin that have developed in my brow. ( I quickly made an appointment and dashed off to get a professional sea weed facial and a miniscule jar of cream that allegedly “plumpens prominent wrinkles with continual use”… It worked psychologically anyway..) The first thing that came to mind was Botox,( I then slapped myself for being so absurd and narcissistic,) and just a few seconds later, I decided that I really need to concentrate on how a quality of life that Lance doesn’t  know exists, and  that I have long forgotten existed will be handed back to us significantly, once we commence insulin pump therapy, and, that one day, Lance’s pancreas will welcome a bunch of excited, lively, brand new islet cells that will deliver insulin when required without any intervention from him or me.

Thank you SO much to the team at I Heart Guts.

You are the first to make me laugh-out-loud and slap my thigh at my son’s defunct pancreas. 😀

 

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Embryonic Stem Cell Treatment Creates Miraculous Recoveries For Australians.

There is an increasing number of Australians suffering from injuries or auto-immune diseases travelling to India to receive controversial embryonic stem cell treatment.

So much so, that this week, two separate research groups, one from Monash University, the other from the Australian Stem Cell Centre are on the verge of receiving permission as early as this Friday to begin the first trials regarding cloning embryonic stem cells left over from IVF treatments.

Their applications are the first submitted since the Federal Government legislation allowing therapeutic cloning came into a force a year ago.

I have read two stand out stories about the treatment provided in India. One concerned a paralyzed mother who was told by specialists that she would never walk again.  After her treatment in India concluded, she returned to Australia with the ultimate gift: the use of her legs.

 The other concerned a 35 year old Brisbane Dad who was diagnosed at age 9 with optic atrophy, an eye condition where sight slowly deteriorates, leaving the sufferer able to recognise only dark and light shapes. After seven weeks of treatment and $45 000 later, his optic nerve is growing back and his eyesight has miraculously returned, reversing 15 years of degradation.

This man’s story does not stop here. Brisbane Dad also has Type 1 Diabetes. After embryonic stem cell treatment, his daily insulin dosage has decreased by a third after returning from India.

His Australian GP has called the improvement in his sight and diabetes “significant.”

Regardless of further expense, Brisbane Dad is returning to India for his last stage of treatment.

He is among 300 patients to be treated in New Delhi by controversial stem-cell pioneer Dr Geeta Shroff. The treatment, forbidden in Australia, involves collecting stem cells from embryos and injecting them into injured or diseased patients.

When taken from embryos, the cells are undeveloped and are better able to replace damaged tissue.

Public Domain

Dr Shroff has collected a bank of stem cells from a single embryo.

Until my own child was diagnosed with this frustrating and life-impairing condition, I would have never agreed to using live human cells from an embryo for medical intervention.

However, I have to admit that my heart races slightly when I read about the incredible success and transformation of lives as a result of this contoversial treatment.

Scientists are ecstatic at the prospect of being able to cure Type 1 Diabetes, Cancer and MS through their findings.

Monash University’s immunology and stem cell laboratory director, Professor Richard Boyd, told the Australian Broadcasting Corporation (ABC) that there are strict guidelines for any therapeutic cloning research.

“It’s completely forbidden to implant this so-called embryo into anybody for the purposes of growing a new human … that is completely against the law and will not happen, In fact as soon as this embryonic form is created it basically is an egg which has been implanted with the nucleus … it’s a mature cell so there’s no sperm egg fusion at all in this.”

Despite Type 1 Diabetes becoming more and more prevelant, and cancer touching so many families, members of the Australian Government and many ethical and religious groups are outraged that this study is being introduced into our country.

I do know that if the heartbreak these diseases cause could be irradicated that it would be such a miraculous advance in medical science. This is the first time I have felt confident and willing enough to engage in the debate that has already caused sparks and divided the Nation.

Permission could still be overturned at Monash University, however I feel that with the new results discovered in India, that we will soon be hearing more miraculous stories concerning the breakthrough of conditions that are all lifethreatening, and life impairing.

I’d love to hear opinions from other parents/family/or people with Type 1 Diabetes. Despite your beliefs, if a child or adult in your family was deemed insulin independent, would you be outraged or supportive regarding HOW the miracle came to be?

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Austin Cooper: Diabetes Style Guru.

Austin Cooper was fifteen years old when diagnosed with Type 1 Diabetes.

He had to walk away from his old life, and embrace what his new life with Diabetes held in store from him.

After going through booklets and scouring the net, Austin was still not comfortable with the chunky chains he needed to wear for life-saving identification. It doesn’t make a young person diagnosed with this  condition feel any better about it when they are presented with clunky, unhip bracelets with a red cross in the middle screaming, “I’m a walking emergency!!”

In fact, it’s quite poetic.

When I see people with Diabetes dragging the clunky versions of medical ID along with them , it almost feels like they have resigned themselves to the fact that they are “chained” to Diabetes.

Austin tried four different versions of the “chain” before deciding that the market for Medical ID was left behind in a time way before his years. He couldn’t make himself wear what was available, so he decided that he needed to make a difference.

Look no further. Austin Cooper has just brought bling to sting.

Austin’s website, www.evasionid.com, showcases his two very modern, sleek, stylish and funky medical ID designs. They are suitable for anyone with Type 1 Diabetes; on the front,they have a stainless steel engraved medical panel, “Type 1 Diabetes” stamped on the back and are 100% leather to boot!

Not only that, but with every purchase, Austin donates 10% to our favourite charity, JDRF.:D

Take a look at Austin’s Mission Statement on www.evasionid.com.

EvasionID boasts a range of funkalicious, fashionable bracelets that are perfect for day/work/evening wear. They are unisex, stong, durable and very affordable!!  In fact, I announce here on this post, chunky, clunky ID chains-be gone with you!

Whether you are newly diagnosed, a teen, or an adult of any age, Evasion ID has a modern, fresh new approach for your Type 1 Diabetes Medical Identification requirements.

Just in case you missed how much I love Austin Cooper’s new diabetes innovation, check out his website

www.evasionid.com

(My son, Lance already has his picked out. Actually, he wants one in two colours to mix and match.)

While I’m at it, I think huge kudos need to be given to Austin, one so new to life with Diabetes, yet one so determined to honour himself through his creativity, AND the entire Diabetes community worldwide. With 10% of his profits going to JDRF, he is also contributing to help find the cure that kids like my Lance and Austin deserve so, so much.

We, who put fashion before function, we praise you, Austin Cooper!!

 

 

 

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Sugar Overload.

Diabetes and I have been at loggerheads ALL week.

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

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

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

 

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

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

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

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

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

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

Ketone strips line the inside of the bathroom bin.

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

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

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

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

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

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

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

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

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

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

The voracious consumption of water has died down.

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

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

7 new holes a week.

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

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

Exhale.

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