Lance and I are both keen and passionate recyclers.

I love to see him peering under bottles or on the back of packets looking for this symbol.

He will race straight to our recycling bin and tell me that he has saved a can or a piece of paper.

I am obsessive when it comes to recycling. I always feel triumphant when my recycling bin is brimming over and my garbage bin contains only household scraps.

Therefore, Lance and I were very impressed when we noticed “the symbol” on the packaging of something we have to have in our possession, like it or not.

An empty box of Accu Chek Performa Strips.

Not only that, but the plastic container that holds the strips can also be recycled!

In these photos are an empty vial and box from a used batch of lancets. Accu Chek packaging can be recycled, which means very little to the average person, but a lot to passionate recyclers!

Diabetes cost the Goverment billions of dollars each year. It is a small but positive step that drug companies are going green in regards to their packaging being recyclable. Some days it’s tough to think of anything good about having Diabetes, but my son and I were both excited about the “symbol” appearing on essential Diabetes equipment.

Insulin is not a cure.

I haven’t had a lot of time to post this week.

I have been furiously chasing colossal build ups of sugar from my son’s blood, or desperately trying to raise the starved levels. It’s been a numbers game this week, that’s for sure.

Earlier last week, Lance was talkative, happy, but his eyes looked heavy and weary and I had heard the toilet flush for the third time in about 40 minutes. It was enough to make him test himself. This is what was on the screen of his glucometer.

I was temporarily unable to breathe. I could feel my heart pounding in my ears and my throat. Stirrings of nausea washed over me. I looked incredulously at Lance, who was happily playing, singing to himself and showing no physical signs of hyperglyaemia. I immediately gave him two bursts of rapid and long acting insulin plus a litre of water to shoot this number down. These are the readings that notoriously spell out DKA. ( The next morning I discovered Lance had a gum infection. That’s the only good thing about hypers; there is usually a standout reason for why they happen.)

That feeling of panic and great distress reminded me of another infamous reading before Christmas last year. Chino was upset and droopy eyed. Lance was weak and pale, unable to use his cupped hands to grasp onto a handful of grapes. They scattered all over his face and down the back of his neck, promptly causing tears and pandemonium. Again I tested, and was left shaking as the glucometer flashed not a number, but a dreaded “word.”

That was a near glucagon incident, however, we were able to increase his unreadable levels up to 2.3mmol/L, 15 minutes later. An  hour later, he was still only 6.2mmol/L. He spent the rest of the day vomiting and unable to move off the sofa, too weak to walk.

In these photos are frightening examples of severe hypoglycaemia and hyperglycaemia. Both, left untreated, could cause unconsciousness, coma or death. The terror that lies behind these numbers is the speed in which a symptom will occur, and what little time you have to treat the problem. In Lance’s case, only a trained eye can detect when a situation is aboout to escalate into a serious diabetic emergency.

Diabetes isn’t just about having your insulin, exercise and modifying your lifestyle. Your child should know a finger prick is coming, just by hearing the machine slide out of the leather pouch, the click of the lancet in the lancet device, and your footsteps approaching them. Fingerpricking is the only way that you can maintain Diabetes at home. This is the side that people who assume Diabetes is a “lifestyle disease” never see. They will never feel that helpless panic, the fear of failure, or the guilt that is associated with taking care of your child who has Diabetes.

Insulin is not a cure.

Because I have Type 1 Diabetes, I used to get mouth ulcers, sometimes three or four at a time.

Then I’d have hypos, because my mouth hurt too much to eat.

That was until we learnt about how Zinc keeps mouth ulcers away!

Mum spoke our pharmacist, and he said that it would be really good for me to have a zinc tablet, with lots of other vitamins and minerals in it as well. I have been taking Multi-Vitamins for Kids for almost two years, and I hardly ever get sick, and if I ever get a sore or a bump, it heals super fast. I have lots of energy too from all the B Group Vitamins! With all the fruit and vegetables and nuts I eat, I must be healthy, because when everyone else has a cold, I’m the only one that never gets it, or if I do get it, it goes away in a day.

Just lately, I have had to start taking another tablet. It is only really tiny and white. In Queensland, they don’t put fluoride in the water, but Prime Minister Rudd is changing this soon. For now, I have to take fluoride tablets to keep my new adult teeth really strong and healthy.

I don’t mind taking tablets if it means that it is going to help my body fight infections and keep me strong and safe. I have to remember to be as strong as a warrior in my mind and think myself healthy. It really works!

Mum has my two tablets ready for me as soon as I get up in the morning.

In this photo, is the two tablets that I take daily to help supplement my diet and help protect me from Diabetic complications. People with diabetes have trouble healing well, getting rid of colds quickly, and mouth ulcers. Without taking a multivitamin everyday, I don’t think I would be as healthy as I am today.

Diabetes means more than having insulin and finger pricking. It affects every facet of your life. Any preventative measures should be taken to prevent complications in the future. Little things like protecting your feet, getting dental checks, annual eye checks and having check ups with a dietician are so valuable. Every parent dreads diabetic complications, so whilst your child is young, get them into good habits by teaching them ways they can fight major health problems caused by Diabetes for their future.

Insulin is not a cure.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Insulin is not a cure.

 I have many hidey-holes around my house where I have non-perishable snacks to treat a hypo.

I learnt long ago that a frantic dash to the kitchen or medicine cabinet whilst your child is skimming around 1mmol/L, screaming or jerking in a life threatening situation leaves you riddled with panic and unable to think clearly.

 I am a freak when it comes to glucagon, because I have seen how it restores my son’s blood sugar levels so that he is in a safe zone, and back from the extreme depths of hypoglyaemia.

I carry one in my bag, I have one under the cushions of my sofa, and lastly, I have even resorted to sleeping with one under my pillow each and every night.

In this photo, is the injection that has saved my son’s life too many times to count. When he was 3 years of age, I found my son with no pulse and miraculously revived him with CPR. He had fallen unconscious in his sleep due to severe hypoglycaemia. It scarred me so deeply that I feel anxious and unsettled without a glucagon kit nearby.

Diabetes leaves me tortured with worry and recalling past hypo memories during the night. I have learnt to sleep so lightly, I even wake up if my son rolls over. I exist on very little sleep, but there have been so many occasions that if I had been sleeping soundly, a tragedy could have easily happened. I know it borders on ridiculous to sleep with a life-saving injection literally under my head, however, the precious seconds that tick by when you are trying to reverse a hypo are crucial for recovery. Night time hypos are often more difficult to treat as the child is still sleepy and will not cooperate with food or drink consumption. That’s why I hold Glucagon’s reversal properties close to my heart, and head for that matter.

Insulin in not a cure.

Lance is recovering well from his first experience with blood, pain, medication and an invasive procedure.

He has had seven injections of insulin today, as his blood sugar is everywhere between the middle of the “normal” range, to 18mmol/L. This is only because he is required to have a diet of soft food only, which basically consists of jelly. mashed potatoes, yogurt, custard and smoothies-all High GI foods with plenty of carbs. At 2 am will be his 15th fingerprick in 18 hours.

He is taking a liquid antibiotic four times a day to give him a headstart with the healing process, and to fight off the threat of infection, which is a great worry as far as Diabetes is concerned. He has been very brave today and rejected pain relief, opting to tough it out instead.

He has begun iodine rinses, they taste absolutely putrid, but he is happy to swish and swirl it around his mouth, with the knowledge that it is going to help heal and get him back to real food quickly.

There was still some post-operative blood-stained drool on his pillow this morning, but the blood clots have formed very well.

Overall, he has had a positive experience from what so many people all over the world fear and dread-teeth extraction.

Even though the worst is over, a lot of care and attention is required at this point to assure that everything is progressing as it should. Diabetes often interferes with this process.

In this photo (1of 2,) are the remnants of Lance’s teeth, that were rotting, aesthetically displeasing to look at, and certainly painful-directly caused by Diabetes-related gum infections and absesses over the past 5 years.

These were the teeth that suffered nerve damage, causing the ends to turn black. The blood drenched gauze beside them were a few of many that were used to apply pressure to halt the bleeding.

In this photo (2 of 2,) is the assortment of medications that have been required to ensure that Lance’s Diabetes does not interfere with the healing process, or that infection does not interfere with blood sugar levels. Hyperglycaemia is notorious for causing any injury or post-operative wound to heal slowly, and also heartily invites infection.

Lance will now have to have 3 monthly dental checks to ensure that there are no further gum problems, or issues with  tany other of his teeth. Fortunately, he has a second chance, as his adult teeth ( he has 6) are all in perfect condtion.

Diabetes can cause devastation to many parts of the body. After his 5 year checkup, I consider myself lucky that there was nothing more urgent that needed immediate attention.

If my son was not fortunate enough to be in the situation where he had the best care possible and the problem addressed immediately, he would have had no choice but to be placed on the Queensland Health Oral Health Waiting List; currently, it takes two years for a child to get an appointment. ALL children, but especially those with medical conditions such as Type 1 Diabetes, need to have 2 dental checks a year, to avoid problems with their teeth in the future. Our Health Department needs to step in and take control of a problem that concerns all children, even those WITHOUT Diabetes. It is appalling what can happen to baby teeth that are neglected. The worst scenario in this particular situation is that Lance could have developed an absess on one of the extracted teeth, which easily could have turned into fatal blood poisoning.

Insulin is not a cure.

After I go to bed, my Mum and Aunty Liz often stay up late and chat away on MSN Messenger. Liz usually checks to see if I’ve been ok, and Mum checks to see if she and her husband, James are OK. James and I both have Type 1 Diabetes and even though he is a man and I am a boy, we have some similar problems with hypos.

My Mum and Aunty Liz both do the shopping when it comes to buying Diabetes supplies for James and me. They pick up our scripts and make sure we have enough of everything to keep our glucometers working.  Mum and Liz also give each other tips on how to treat a hypo. James usually has softdrink, milk or something High GI to eat, where as Mum usually gives me glucose tablets. There are only two types of glucose tablets available in Queensland and Tasmania, and maybe the whole of Australia. After 5 years of Diabetes, if I am really low, I HATE chewing these chalky white tablets. They are called Glucodin, and we have bought so many packets in my life that I could  draw the picture on the box! (The other ones are a big square shape and they are too big for me to eat; by the time I am finished eating one, my blood sugar has dropped lower.)

So Aunty Liz went hunting on the net. She found a place in America (!!!) called Fifty50 Pharmacy that sell different flavours of glucose tablets!! They have raspberry, grape, orange and even watermelon flavours!

This week, I ran out to get the mail. I found a strange package in the postbox; it was all lumpy and felt like it had little bottles inside of it. It had my name on it! I quickly rushed inside and showed my Mum. I looked on the back and saw that it was from Aunty Liz! I pulled really hard and found four bottles of RASPBERRY (my favourite) glucose tablets!!! They came in little tubes and when I opened each tube, the smell made my mouth water. Mum said that I was allowed to try half of one. Even if I didn’t have diabetes, I would eat these. They are just like lollies and it’s so exciting to have something new and yummy for when I have hypos. Aunty Liz bought some for James, too. She picked Grape flavour for him, so she sent some grape ones for me to try also.

I have had two bad hypos since I got them and they have helped me within minutes. They work so fast, and I can feel them pulling me out of the hypo. They don’t let me sink into it too far. Tonight, I was at the supermarket with my Dad and I crashed into a whole shelf of M&M’s. A sneaky hypo tapped me on the shoulder and made me brain send strange messages to my legs without me being able to help it. Dad quickly tested my blood sugar, and I was 2.2mmol/L. He popped open my glucose tablets and I crunched up two as quickly as I could. I felt better pretty much straight away. The funny thing about this hypo is that I was in the lollie aisle when it happened!

My Aunty Liz is so kind to me. I know it’s strange to be excited about glucose tablets, but the day I got them was a really good day.

In this photo, Lance is showing off his new hypo treatment. These raspberry glucose tablets were ordered from America, arrived in Australia and sent to my friend, Liz in Tasmania. She then sent Lance a package containing 50 of them to us in Queensland. Between currency exchanges, shipping charges and postage, it was a slightly expensive but highly worthwhile exercise.

There are 140 000 people with Type 1 Diabetes in Australia, and that number is rapidly growing. The general rule when diagnosed is to treat a hypo with 6 large jelly beans or 8 small ones. It’was only after a while that I discovered glucose tablets and was amazed at how well they worked in comparison to  jellybeans. Lance is prone to hypos where he is becomes very disorientated, scared and confused, and it is often a struggle to get him to eat anything, especially something that he has grown tired of.  One of these tablets will at least make him cooperate with me enough that he will  drink something sweet or eat something that will reverse the hypo.

 I find it stupendous that we have to resort to ordering child-friendly diabetes products from the US!!! People with Diabetes deserve a choice too, especially when so much of their lives revolves around flavour and taste! Jelly beans work for some people with diabetes, however, every person is different, they have different hypo symptoms and have different recovery times. Lance has symptoms that are very different to a lot of other children that we have met.  I am ecstatic that Liz bothered to research where we could order a different brand, and despite having to resort to ordering from America, I’m so glad she did, because three potentially difficult hypos were halted by these delicious discs of pure glucose.

Diabetes management isn’t an easy road to follow. It takes hours of research, hundreds of conversations and pages of reading to get current, helpful information and useful tips. I am so relieved that we have discovered something that is highly beneficial to assisting my son through these severe attacks, but there is also an element of sadness when I look back on his delight of discovering that he had aquired new glucose tablets. I found him that same night, studying a poster of the continents, and tracing his finger from the United States over to Australia. To order these 50 tablets cost approximately AUS$30.

I would happily invest every cent I owned into anything that helped or relieved his difficult and devastating days where hypoglycaemia sets in and drains his body of energy, leaving him with terrible headaches, fatigue and ironically, high blood sugar, a result from consuming so much sugar to reverse a hypo in the first place. It’s a horrible and exhausting vicious circle.

Insulin is not a cure.

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

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

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

“Oh right. Hmm. Thanks.” (Shudder.) 

I decided to approach the diabetes educator about it.

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

“Oh, it brings ‘em back…”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Glucagon. I would NEVER be without it ever again. 

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

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

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

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

Insulin is not a cure.

One of the most frightening experiences concerning Type 1 Diabetes, excluding severe hypoglycaemia, is Sick Days.

Lance has generally excellent health, he fights off viral bugs very quickly, and any sores or cuts heal in a matter of days. The only thing that I have NO control over is a vomiting virus.

We have had one severe vomiting virus each consecutive year since Lance was diagnosed. With each episode, I am totally pre-occupied with monitoring blood sugar levels, giving hourly shots of insulin, comforting my ailing patient, taking his temperature, administering Panadol or Maxolon Syrup, cleaning up projectile accidents, remaking the bed with all new linen, checking for ketones, offering jelly and ice blocks in a desperate attempt to get my son to consume some easily digested carbs, keeping in check with the doctor, getting the pharmacy to deliver  Paedolyte iceblocks because the stock I had on hand are out of date (arg).  Last year, I was as delirious as a cut snake, as a result of no sleep and very little food. I emerged looking like I had been a contestant on Survivor: The Australian Suburbs for a month.

I fight so hard to keep him out of hospital and put on a drip, because it distresses Lance so much with the drips and the injections and the bright lights. I can’t stand to see him so traumatised. So I put in the long hours and become a prisoner in my own house. My only source of contact with the outside world is the telephone. If I do use it, the conversations are to the doctor, the pharmacy or the Diabetes Educator-really stimulating and exciting people to talk to about such a riveting matter.

Recently, I found some new information in the Diabetes information section at the pharmacy. I was so ecstatic to find a comprehensive, foolproof guide about how to handle sick days from home! It talks about giving mini shots of glucagon if you are worried about a hypo as a result of lack of carbohydrates. It has suggestions for what to do if your child is 14mmol/L. Or 4mmol/L. It’s just an all round excellent piece of literature that everyone should own or know about.

In this photo is the fold out copy of Guidelines for Sick Day Management for people with Diabetes.

Diabetes is a risky and dangerous condition to have if you are sick with a virus, especially a gastro bug.  Blood sugar control is an additional worry to be concerned about, as it often becomes high and difficult to control when there is an infection or illness in the body. If  a person with Diabetes is too high for too long, or has minimal insulin in their blood, they are a high-risk candidate of a life threatening condition called Diabetic Ketone Acidosis. (DKA).

Diabetes Australia has produced and distributed a fantastic guide concerning how to care for somebody with Diabetes who is ill at home.

Organisations like Diabetes Australia make living with Diabetes so much easier through their information sheets and webpages. You can find out a lot of useful information just by making a phonecall or going online. Even a fold out piece of cardboard can be supportive and comforting when you have a sick child with Type 1 Diabetes. Every now and then, there is updated information or new innovations regarding diabetes care that is put out by DA.

For online information regarding Diabetes Australia, click on the link to find out a list of services and advice.

Insulin is not a cure.

Before his evening meal, Lance always goes through the ritual or injecting himself with his rapid acting, and his long acting insulins.

I let him take full control of unsealing the pen tops, screwing them on, and dialing up his doses. The only part I play is double checking that he is giving himself the correct amount.

In this photo, is the disposable waste (excluding the insulin pens) that goes in a yellow sharps bin after every injection. Over 12 months, every person with Diabetes who injects insulin would have a huge amount of plastic, protective post-injection litter to dispose of.

(We left the needles on the insulin pens on purpose so that you can see what I have to put into my tummy four times a day.)

Type 1 Diabetes is all about injections and how to give yourself insulin so that it is clean and sterile, and the risk of infection is barely an issue as a result of meticulous packaging from the manfacturers. We are fortunate to live in a country that ensures that every person with Type 1 Diabetes, receives syringes or pen needles  free of charge, thanks to the NDSS.

Lance is fortunate enough that he automatically qualified for a” Child Disability Consession Card” when he was diagnosed. This enables me to purchase the strips necessary to operate his glucometers for no more than $2.50 for a box of 100. (Without a consession card, you are looking at between $10-$20 every few weeks, which makes people less inclined to test frequently.)

However, Lance’s daily disposables equate to a bulging handful. The “sharp things” or anything that has been exposed to blood are placed in a sharps container, which we then take to the Hospital to be incinerated.  The two plastic caps that protect a pen needle and the safety seal have to be thrown away as rubbish. When you actually observe how much waste that gets thrown away every month-multiplied by 140 000 other Australians with Type 1 Diabetes, that’s a colossal amount of waste that has to be disposed of.

 It’s such a shame that the safety and well being of people injecting insulin has to be of detriment to the environment.

Insulin is not a cure.

I climbed up on my little step ladder, and found a bag that I remember, but have not seen for a few years.

I opened it, and found some books with hard pages.

They all had my name and a message from Mum inside of them all.

I read some of the words of each book, and suddenly I remembered!. These were my baby books!!

My Mum read to me, even when I didn’t understand words. Dad said she read to me the day I came home from hospital.

In this photo, are the books that I loved before I went to hospital. Mum said that this collection of books were my favourite, the ones that I wanted her to read over and over again. 

There is one there called “Elmo Loves You.” When you open it, it is inscribed:

“To my sweet apricot, Lance, I know you have been feeling terrible, so I thought a new book might cheer you up.

It’s all about the things that Elmo Loves, except he forgot to write that YOUR Mum Loves You!

Hope you feel better soon, Big Love, Mummy. 31-10-02“

When we were looking through them, Mum realised she bought this book the day before I went to hospital when I found out I was sick because of Diabetes.

She was trying to cheer me up.

Diabetes robs precious experiences in your childhood and makes you appear “grown up” before your time.

I remember the feeling of snuggling up to my Mum when she read to me and how he hair smelled beautiful, and how she would hold my hand. She read them to me whenever I wanted her to.  I read long chapter books  with Mum now, so I have to  have a glass of juice beside the bed, or I have to go to the kitchen to grab an apple. Mum might have to do a fingerprick on me.Sometimes, when I’m turning the page, my finger leaves a trace of blood on the paper. You can’t even read a book without being reminded  of   Diabetes.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        

I stay up until 2am every morning.

I used to set an alarm, but I am a terrible “snooze button” girl.

So now, I just stay up.

Sometimes, I write short stories, I chat to my friends via MSN Messenger, who feel like they right beside me, but are actually in Tasmania,Sydney, London and America. Even my oldest friends who live two minutes away jump online if they need to share some info or reveal some news. Everybody knows why I am a nightowl, so it’s a perfect opportunity to get in touch wih me.

Sometimes, I knit. Sometimes, I read saucy, vampish novels. Sometimes, I watch controversial films. Sometimes I stand in my lingerie on the porch at midnight, gazing up at the stars. I try to relax myself as much as possible and feel the crisp air sweep my worries away. Sometimes, I play the piano, and let years of discipline and rehearsals distract me from everything. Whatever it is, I make sure it is completely removed from Diabetes.

However,around 1.30 am, I start to feel a little anxious. There is a reasonable chance that Lance could be too low for this time of the morning. He loathes waking up, and we ALWAYS end up in a food fight and tears.

The last 4 2am tests have been peachy. His blood sugar levels been perfect and wakes up recharged and energized.

Tonight, I have been speaking to friend, Liz.It is possible that she knows me better than anyone else, she is incredibly precious to me, as is Dan. They both understand and respect the struggles and terrifying moments that randomly appear at any moment. I truly believe that they were “sent” to help me overcome the agonising lonliness that accompanies being a carer, As much as I am devoted to and worship my son, I no longer have an adult life. It’s like I’m in an unhappy marriage and Diabetes is the repugnant, unpredictable yet predictable husband. The biggest problem is that a divorce or annulment is impossible, so I engage in some “venting and release therapy” with Liz. I always feel enlightened to battle on after a session with her.

This evening, she was just about to put her husband to bed, as he needed to get up early for a shift at the hospital.  Just to add some drama to the night, his before bed bsl popped up with a gruesome HI reading. That’s 32.9mmol/L. I envision blood to resemble toffee whenever I see a HI reading. Liz bolused in accordance to his pump, and waited an hour for a decrease. HA!He was still HI. It made me realise why I do bother to sit up and do this test. I have been ridiculed for it by doctors’ and other parents of people with Diabetes, telling me that ”there is no need for it and he would wake up if he way hypo anyway.” Riggggght. However, as I have repeatedly said, I KNOW my son’s diabetes and how it likes to behave when the sun goes down… 

So currently, it is 12.42am, and I am doing some gentle yoga, and devising a favourite recipe of Lance’s into a Coeliac version. I have just minutes left to find out my fate for the rest of the morning.

In this photo, I am delighted that 2am passed, Lance is hovering around 8mmol/L and I have passed the 2am time barrier with flying colours. I can almost be assured that finally,  I can catch some tranquil, much needed sleep.

Diabetes changes every aspect of your life. 8 hours of solid sleep has become a thing of the past. I have actually woken my son just to prove to myself that he really was alive. I often rest my head on his chest to convince myself that he isn’t in danger. I turn on a soft light and watch him rhythmically inhaling and exhaling. I inspect the hue of his skin, checking for any hint of  pallor. I hold his hand, hoping not to discover that it is clammy. He rarely flinches anymore when his sleep is disrupted by a fingerprick.

Diabetes especially likes to taunt  during the night, with many hours spent awake, feeding, comforting, cleaning and re-testing over the past 5 years. Understandably, Lance is confused and angry as to why I wake him up to eat or drink if his levels are low, as he does not understand that by cooperating he is saving his life. Before I began my 2am vigils,  his blood sugar would drop too low, and for too long. As a result, he would begin to have a seizure, as his brain was completely starved of sugar.He would wake with a blood curdling scream, his teeth clenched, his hands and feet stiff, unable to possibly explain what is happening to him. This is where I have no choice but to administer a Glucagon Injection in the thigh.(It releases glucose stores from the liver, automatically raising blood sugar levels.)

 The needle is thick and blunt, and leaves a techicolour bruise and painful injection site for a week or two. When he starts to feel like a shadow of himself, he can consume drinks, ice-cream or something rich in carbohydrates. The almost laughable irony is that after a Glucagon shot, which has saved him from coma or death, it leaves him with severe vomiting until he is completely empty, violent headaches that medication won’t touch; they are so unbearable that he winces in agony to even dimmed light. We have to endure darkness until his headache improves. A hypo of this grandure saps a lot of strength from the body, so Lance sleeps for most of the day, recovering from the equivilent of being hit by a truck. All whilst boarding the poetic train again, testing blood sugar levels hourly, to ensure that his blood sugar is not going to drop to dangerous levels once more, and finding ourselves repeating this horrific process.Again.

Insulin is not a cure.

A while ago, Lance and I decided that we would write a letter to our regional newspaper in honour of International Diabetes Awareness Day. ( November 14.)

The topic that JDRF asked us to concentrate was although the numbers of Type 2 cases is alarming and reaching epidemic proportions, that there was also another type of Diabetes called Type 1 Diabetes.

 The type where you depend on insulin to live.

The type where you can never leave the house without jelly beans again.

 The type that causes insidious long term side effects.

 The type that predominantly affects children and adolescents.

 The type where you can have no family history of Type 1 diabetes.

The type that  grows like a weed after a downpour and as a result, uproots your life.

In this photo is my letter, entitled”Become Aware Of The Other Type Of Diabetes,” and a photo of Lance in the centre that thenewspaper had on file. (Media Jockl!!) The editor left my letter as it was and didn’t alter any statements or opinions. I was delighted that the paper took International Diabetes Awareness Day seriously enough to publish my letter on Nov 14.

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Diabetes is visual, destructive, menacing, mentally exhausting and can really exhaust the human spirit. With the 1st EVER International Diabetes Awareness Day, it felt like finally, “we” had a voice. Finally, people understood. Even if they only remember the world icons like the Eiffel Tower and the Sydney Harbour Bridge lit up in ” blue” for the day, that’s better than silence.

The pride and quiet recognition on my son’s face whilst he watched the celebrations taking place made me want to applaud the World Health Organisation for finally acknowledging that “a sea of blue” is empowering to any person who has diabetes.

Just like my Mum is in charge of my diabetes, I am in charge of Rufus’s.

My friends at JDRF gave him to me to look after and protect after I had come out of hospital.

He has Type 1 Diabetes, too.

Sometimes, I have to sing to him when he gets an injection that hurts, and give him pretend honey when I prick his finger. Mum takes a mini-honey pack in our diabetes bag just for Rufus.

Mainly, Rufus is waiting for me in bed and I don’t take him out anymore. I feel like I am going to be safe if he is with me whilst I sleep.

In this picture, is Rufus The Bear. A lot of other kids’ with Type 1 Diabetes have a Rufus, (the girls’ have “Ruby,”) but to me he has his own personality and he has seen me go through lots of bad times.

Here he is in bed, waiting for me to snuggle up.

Type 1 Diabetes is a very lonely, confusing condition for a child to grow up with. You can’t go and play without having your sugar levels tested first. You can’t accept a treat from somebody without thinking whether or not it’s worth feeling miserable later. Then there are all the needles. Kids without Diabetes don’t know a life with life saving injections, and are often scared or unknowingly cruel to a child with Type 1 Diabetes. My son has been told that he has AIDS, and that he is “covering” it by saying he has Diabetes. (Thankfully, he is too young to grasp the meaning of such a concept.)

A JDRF Parent came up with the concept of Rufus and Ruby Bear. The idea behind the bear also having Type 1 Diabetes is that the child can feel that he or she is not alone, and they have someone to tell their diabetes-related secrets to. Rufus receives insulin each night, when Lance has his. (Lance has learnt to become quite skilled at administering an injection, I must say!) Often, out of the blue, Rufus will receive a fingerprick, and if it is “high” or “low” he is “treated” accordingly.

Lance speaks most eloquently, and I am beginning to hear some feelings that he wants to share with me about what is like to feel hypoglycaemic, or what it is like to feel insulin working. Concepts such as Rufus are excellent at helping children express how they feel-and Type 1 Diabetes is a particularly difficult disease to explain to someone. I’ve read all the books, listened to all the experts, but to hear my own child tell me what it’s like to be so disorientated that he cannot take a sip of a sugary drink to get his blood sugar levels up is nothing short of a blessing.

Insulin in not a cure.

I have another auto -immune disease now.

Mum says that it is a “complication” but I know she is saying that to make it sound not as big of deal as it really is.

I have Coeliac Disease too, often spelt Celiac Disease, sometimes known as Sprue, or Wheat Allergy, except it’s not an allergy at all. If you hadn’t noticed from the subtle hints in our other posts. It means I can’t eat food with wheat products in itever again. I just wasn’t ready to talk about it yet.

My Mum has a book of all the funny things I say.

We were looking through it together, and when I was three, I said to her;

“I am Nothing Boy.

I have no name.”

I don’t know what I meant back then, or why I said it, but it makes me wonder…but I don’t know what.

 Like Type 1 Diabetes, it has no cure, it is has long term complications, and it can be life threatening. (NB-Added by Kate-Lance doesn’t need to know these elements of the condition yet;we are working on a day-by-day adjustment scheme.  )I can’t eat Vegemite.

What type of Aussie Kid am I if can’t have Vegemite? There is a gluten-free imposter, but I watched Mum’s face carefully and she almost gagged. She said she would never make me eat it,  unless I liked it. Not this little red hen.

I can’t drink Milo. Sometimes, if I was feeling low, I would have a glass of Milo and milk and all would be fine within minutes. No more of that.

I can’t even eat pasta. They have a gluten-free version of it too, but it’s not the same either. It’s  squishy and tastes like rice, even though I love rice. Guess what though? It has gluten in it!!!

Mum and I went to the grocery store and found some foods that would be “Gluten Free” and that I would like.

Ummmmmmm……

It was hard work.

There must be a lot of people with Coeliac Disease because the place we went to had a whole aisle with gluten-free foods. I felt guilty a bit about complaining and being upset. Still, I am. I’m allowed to be annoyed. Just like the other coeliacs were when they were first diagnosed.

In this photo are some of the foods that we brought home. I have tasted the nut bars and they were ok. Gluten Free Foods are double the price.  This makes things more expensive when Mum goes shopping. I watched her pay the lady, and she handed $50 after $50 after $5o note to her and we only had about five bags of take to the car. Mum is going to eat like a coeliac too, so I don’t have to feel like I’m the only one. She said we might feel a lot better without eating gluten and wheat products. She said a lot of famous people go on wheat free diets even who aren’t coeliac, so I’m pretending to be Zac Efron at the moment.

All of these foods are gluten free or free foods. Free foods in diabetic lingo means I can eat lots of them and they won’t harm my blood sugar. Luckily for me, I like gherkins!( In America, I think you call them “Pickles.”) There is gluten free icing sugar, gluten free pasta, gluten free Vege Chips-which, I have to admit are delicious-but too many and they shoot my levels up. AARRGGH! We also have gluten free nut snacks, gluten free rice noodles and hazelnuts.

Diabetes isn’t just about having insulin or checking Blood Sugar Levels everyday. There are so many little side dishes to the MAIN MEAL and you have to learn to chew politely and eat whats put in front of you.  Some people get skin conditions. like psoriasis,ringworm, athletes foot, jock itch for entree. Every kid with Type 1 Diabetes has a heightened chance of facing coeliac disease, or thyroid problems,  and a frightening chance of vision problems, or without early  detection, blindness, as the years rumble by.

 If there was ever two illnesses that were ironically ill-suited , these two would be up there with the worst. 

A loaf of gluten free bread is almost $5. A box of gluten free pasta is over $3. Healthy snack food that look appealing to children are almost $7 a box. Untreated Coeliac Disease can lead to a whole new ballgame of long term complications. The only treatment is to avoid Gluten totally. 

When my doctor gave me the final test results, he was speechless. He has grown to love Lance, and is inspired by his determination and resilience, and the ability to always have a joke or a laugh, the way his little arms instantly wrap around his tall, chocoate skinned  body when we leave the surgery. Lance knows that this man, who is equally as dear to me, has saved him and made life saving decisions when the doctors’ on duty at the hospital haven’t.

 He just put his hand on mine. Finally he said in a hushed,monotone voice, ”This is just terrible.”  I looked up and he had his hand covering his brow, as if the sun was too bright for him.  He couldn’t look at me, but being the gentleman he is, proffered the tissue box in my direction. He understands what a battle it has been with the random episodes of  severe, life-threatening hypoglycamia and Lance. He has performed miracles and gotten us appointments with highly credible dieticians who have in turn worked tirelessly with Lance designing a Type 1 Diabetes kid-friendly diet.We were just starting to reap the benefits of hard work and dedication, and now we are back to Sqare One again. Of course, you can imagine I understood his devastaion.

I won’t let this destroy  me like the last diagnosis. Type 1 Diabetes has made me too tough and determined to drown in my own tears and smile sweetly for everybody else.

So, On we go.

Insulin is not a cure.

It is the 1st day of January, 2008,

I have had Type 1 Diabetes since 2002.

That’s a long time isn’t it?

Because  it was New Years Eve yesterday, Mum called in to the pharmacy to get some new insulin pen needles for me. We were looking at the glucometers on display.

I had or have most of them. I was an Optium boy to start with, but then, a really great man from Accu-Chek gave me the Accu-Chek Integra. It is good for me use because there is less fiddling with strips. I also have the Multi Clix Pen, which has a barrel with  six lancets in it. So now I prefer to use Accu-Chek products.

Mum asked me which one I liked. I liked the ones I have had before! She asked the Diabetes Assistant if she could help us.

Then she showed it to me.

It was light.

It was quick.

It was fast.

And it was red.

It reminded me of Spiderman.

It’s called the Accu-Chek Performa.

When  you get a drop of blood, it sucks it up so fast, and before you have gotten over the shock of that, the result is waiting 5 seconds later!

“What do you think?” asked Mum.

“I love it! I love it! I love it! I love it! I love you, Kate. Thanks for getting me this one, it’s so much better than any other one I’ve had!” I was so excited and felt all light and silly. 

Mum went up to the counter and paid for it. I felt sad because Mum had just paid for Christmas and my birthday, and still she was spending money on me.

Because she knows me so well, she stopped me,and said “Spill it. What’s the matter?”

“Ohhh…it’s just expensive. I thought it was only going to be $24.95. I was looking at the wrong price. $59.95 is too much, Kate.” I said firmly.

“Lance, we need another meter. We have one at Pop’s. We have one with your Dad. We have the Integra, which in now for you to use, and I have the Performa, which is for me to use. So everybody that loves you has a glucometer. Doesn’t that make you feel safe? Money spent on Diabetes gadgets is money well worth spent, sweetheart.”

I remembered a boy I met who had had Type 1 Diabetes for 4 years. He still had the same meter they gave him in hospital. It kept stopping and giving different readings all the time. I hoped he had a new one. I have four now! I smiled.

“Yeah, Mum it does make me feel safe. Thanks so much.”

In this photo, my seven-year- old son leapt up in my arms because I had bought him a new glucometer. Not a Playstation 3 game, not a Transformer, not Yugi-oh Cards, but a glucometer. It took a while to process that thought.

We have been playing with the Performa ALL day.Lance was as happy as a boy with an new iPod.

(Maybe not in this photo. We had just found a 4.5mmol/L reading. Off to the kitchen we go load up on carbohydrates!!)

Diabetes can make you feel sick even if you are excited and happy. Food preparation and counting carbohydrates are continously organising themselves around my head, sometimes without me even realising it.Diabetes makes me feel like a robotic creature who doesn’t have any interests. I am its mistress.

Insulin is not a cure.

Dear Diabetes

You and I have a tumultuous relationship. Over the past 5 years, I have finally accepted that you are not going anywhere. If I am respectful and dutiful to you, you often return the favour, other times you spit in my face. Without sounding dramatic, I have finally accepted that you will always consume my every thought, and that the life I had is totally non-existent, never to return.

For starters, the shock and disbelief that you had ever-so-cunningly invaded my baby’s body without me even realising leaves me with chills and tears spilling onto my desk. I look at photographs of my baby Lance 3 months before diagnosis and I cannot tear my eyes away, because I know that you had already begun the beta cell revolt in his body. His piercing screams in the middle of the night had already confirmed that you were destroying these virtually perfect, brand new cells. ( The doctor’s initially diagnosed these screaming episodes night terrors.)

When you had caused the most of your devastation, the real symptoms came out in my son. Insatiable thirst, 24 wet nappies a day, lethargy, sunken eyes, screaming for no reason (apparently your earlier “night terrors” were severe leg cramps.) You also would have had had nausea, abdominal pains, you had thrush and ulcers in your mouth and on your genitals, and the most horrible side effect of all is that you lost a fifth of your body weight in 4 days. I knew you had diabetes, purely because of your lust for water-you were literally drinking it and passing it straight through-and drinking up to two litres a day.

At the hospital I sat whilst you were examined and I was asked my whole medical history and your short medical history. I looked back and we made phone calls: There was no cases of Type 1 or 2 Diabetes in your maternal or paternal families, even going back 3 generations.  The paediatrician carefully examined your feet, looked closely into your flinching eyes, and then started you on a drip. In amongst all of this terror, two things happened. I read an information sheet about the pre-symptoms of Type 1 Diabetes. You had every single symptom,in its most extreme form. The phrases “insulin dependent,” “ your son will die without his injections,” “ constant care” were carefully explained to me.

I spent a week at the Mater Children’s Hospital learning how to care for you and asking questions all day, all night to anybody who would listen. I read nursing journals with chapters specialising about Type 1 Diabetes, I was introduced to JDRF and Diabetes Australia and given tremendous support by their extensive “what-to-do-when-your-child-is -diagnosed-with-Type 1Diabetes” support information. The nurses and paediatric endocrinologists were living saints.

We were finally allowed to take you home after six gruelling days spent in a hospital ward.

The drive home was surreal. It felt like everything was different, and nothing would be the same, even though we had done that drive hundreds of times before.

I had a beautiful and highly acknowledged nursery of wild and exotic plants that I lovingly nurtured and took meticulous care of. It was my private sanctuary. When we finally got you home, I forgot all about them, not out of lack of wanting to, but because I was on 100% patrol. Night duty, sleep duty, working out how I could distract Lance from the injection in his soft little tummy that he had to have before he ate.

(One night I went out to sit and ponder with my plants, who all had a different story to them, and there they stood, dead or lifeless  in their pots. I didn’t even care. I tried to salvage a few, but I realised that I wouldn’t have the time to nurse them back to health.  I had my own real life Special Care Unit operating inside the house. I had let them perish without a thought, as my son was so much more important. It was a very poetic moment. I didn’t open the door to the nursery ever again until I moved out of that house. )

Going out was the worst part. Not only did I have a nappy bag, I had a bag full of doctors’ numbers, glucometers, glucogon pens, spare clothes and nappies, bottles of water, bottles of apple juice..something to cover every diabetic complication.

Family and friends started talking about things that Lance did as a baby, and how wonderful his first birthday was, and even his attachment to favourite toys. I would stare in his room and focus only on the the things that would keep him safe that day. It soon occurred to me that I had absolutely no recollection of Lance’s life pre-diabetes. Some hazy bits about his birth are there, but there is no way that my sub- conscience is ready to give in and let me see the life that was.

After mentioning it to my GP, I was referred to a psychologist who diagnosed me with  Post Traumatic Stress Disorder. Even today, I only have photos and video footage and my family’s stories to rely upon concerning my baby’s life as a person without Type 1 Diabetes. Occasionally, I will see a baby in a pram smile behind a dummy, and I will have a quick flash of  Lance as a baby doing the exact same thing, but before I have time to savour the memory, it’s vanished again.

Before you gatecrashed our life, I was a fashionable cosmopolitian woman, who knew the entire goings on in the city. The first thing that I did when Lance was diagnosed, was bought myself an expensive eye cream, because I knew I was going to need it.

 I was right. This year, I turned 30, and I look at photos of myself as a young 24 year old mother with joyous, laughing eyes. These days, they are dull, and lifeless, and there is no time for the eye makeup that I used to wear to play up my red locks.

I was so touched that Lance’s father (who, even though I am separated from since 2003; we are still close friends because we want to be, and for Lance’s sake) presented me with a package for Christmas this year.

In this photo, is a small, expensive but amazing jar of eye cream. Even after the most traumatic nights, when honey and lemonade, strips and lancets are strewn from one end of the room to the other, an application of Clinique “All Around Eyes”can make you feel like you can face another day, no matter how fabulous or terrible it is. When people come to the door, I don’t feel like I am a closet alcoholic because I able to look them directly in the eye with confidence and not have them notice that my eyes are almost slits, ot thst I  look like I am literally dead inside. It’s amazing that a container so small could contain so much power and make me feel so positive about the New Year.

Diabetes makes me feel like I don’t need “that new dress” or
“that new haircut,” because I am constantly thinking about saving money for an Insulin Pump or even a trial that could be ongoing in the Eastern States. It makes me put myself last. Naturally, I have Lance’s primary needs to cater for; food, clothing, shelter, education, and then his health requirements- special low GI foods,expensive gluten free products, and supplies to keep him alive.

Then there is Diabetes. I save money for an emergency flight or for an Insulin Pump, which I know is going to change Lance’s life for the better. I always have to keep money aside for after hours doctor’s visits as well- because Diabetic complications are reknowned for appearing one minute on a Friday afternoon after the Doctor’s Surgery have shut. Weekend pharmacies are also a money vacuum- you can easily hand  over $50 and get coinage in return.

Our pets, Chino and Luna provide love and comfort. In return, it’s a pleasure to provide them with the foods that they like.

And then there’s me. I t’ll be my turn after the dentist and the insulin pump.

Insulin is not a cure.

Type 1 Diabetes means having to remember to do a lot of things to keep healthy, everyday.

I must have at least four injections of insulin in my tummy, everyday.

I must test my blood sugar by pricking my fingers at least 10 times, everyday.

I must eat at least seven meals whether I’m hungry or not, everyday.

I must have lots of pasta and rice, 2 pieces of fruit and 5 vegetables, everyday.

I have to look after my feet, everyday.

I have to learn not to get stressed or frustrated, everyday.

I have to exercise for 30 minutes hard ,everyday.

I have to try not to let my blood sugar go too low or too high, everyday.

 I have to think of my future, everyday.

I dream about donuts, everyday.

I have to control my Diabetes and not let it control me, everyday.

But I still have Insulin Dependent Diabetes, EVERYDAY.

I don’t hope too hard, but a tiny part of me wishes for a cure, everyday.

Insulin is not a cure. 

 It is a very surreal concept to comprehend that my son  continues to live each day by what comes out of laboratories, trucks, refrigeration and lastly, the humble box.

Despite being a week before Christmas, yesterday, I chose to collect a prescription for Novorapid and Levemir; the two insulins that my son relies on to mimic the work of alive and healthy beta cells, and another case of Glucagon.  (Sometimes I will hold the orange casing in my hands and realise that it is responsible for my son being here and alive on Earth, counting down the days until Christmas. His endless chatter is like music to my ears, or his silent concentration whilst contructing a Lego Alien is sheer poetry in motion. )

As my son has Type 1 Diabetes, he is entitled to a “Child Disability Card” which allows collosal concessions.

An hour later, I walked out of the pharmacy with all of the paraphenalia imperative to keeping my son alive ,all after paying the bill of $28. Without the assistance of NDSS and Diabetes Australia, I avoided a bill of approximately $1000.

In this photo is my son’s supplies from an NDSS branch pharmacy. It’s amazing that all of the items in all of these boxes keep him alive and healthy.

Type 1 Diabetes costs the Australian Government millions of dollars each year. With five new diagnoses everyday, it certainly isn’t a problem that is going to improve anytime soon. With the introduction of an insulin pump grant scheme, Type 1 Diabetes would soon become a more managable problem, for the sufferers, and the Government.

Diabetes Australia and The National Diabetes Services Scheme (NDSS) have fought hard to ensure that all Diabetics face the least amount of financial imposition possible. Without this assistance, living with Diabetes would be simply unbearable. If there is anything to be grateful for about having Type 1 Diabetes, it’s that we live in a country that takes the financial load off. As a parent who looks at and lives with Diabetes everyday, I am so grateful for the efforts of Diabetes Australia.

Lance woke on early Tuesday morning, sweating, tossing and moaning.

Chino was on the bed, which was strange, as he is usually on his own.

My son was whimpering.

I reached for the glucometer and found a 2.4 reading. His bedtime reading was 10.4, so I thought that I would skip my routine 2am test. 10.4mmol/L is a pretty safe number to go to bed on.

Ha.

The vicious circles of Type 1 Diabetes. I slipped up. It knew it too. My son struggled and fought in my arms as I begged and pleaded and made grandiose promises for him to drink lemonade. As usual, I was “harrassing him” and he was disgusted that I had interuppted his sleep. If I let him go back to sleep however, little does he know that he wouldn’t wake up.

I remembered three squares of chocolate in the fridge. Before I started to feel really helpless and upset, I raced for them and held them on the palm of my hand like they were nuggets of gold. I could feel my face alight with a fake smile; the type I remember my Mum giving me when she was about to give me some rancid medicine as a child. He saw my face and I motioned my eyes towards the chocolate

Despite the state of confusion that accompanies hypoglycaemia, he looked confused, as to why I would be giving him chocolate in the middle of the night. His frosted-over eyes focused on the treasure and he devoured them in no time.

He pressed his head back into his pillow. The light hurt his eyes.

I put a straw to his lips and he drunk without even thinking.

Retest: 7.4mmol/L. We had just gotten through a relatively tidy, routine hypo episode.

The next morning, I could hear a frantic “Hello! Hello? Hello Hello?”

I wasn’t dreaming.

I’d slept in. My cousin, Callie had arrived from about 90 minutes away to visit.

She has been living overseas for a few years now, and it is a blessing to get the chance to see her.

She was amazed at how much her second cousin had grown! She was swarmed with love and kisses.

Scott, Lance’s Dad, was good enough to stay with him whilst I accompanied Callie to the Cemetary, to pay our respects to some mutually loved and lost souls.

We popped in to a cafe to grab some lunch, and she decided that she wanted to buy Lance a Rubik’s Cube. They are the hot gift line for Christmas this year, so we searched around and eventually snared one.

Callie had to be getting back as it was getting late, and she wanted to give Lance his surprise.

She revealed the bag.

He pulled out the present.

His eyes and his smiles were as bright as each other.

Compared to the eyes I had seen 12 hours earlier that were pleading for me to leave him alone, and barely open, it was almost an emotional moment for him to seem so alive, so free of routine, to have something spontaneous spike his day. He was immediately intrigued at how it worked and slightly perturbed that after a few twists, the colours were all askew.

Callie’s birthday is two days before Lance’s. It was fantastic to see my favourite cousin, whom I grew up with and remember so vividly, arm in arm with my child.

In this photo, Lance and his second cousin Callie share a hug and reunite. Prior to this shot being taken, Lance was hypo, and very weak, he wanted to sleep and it felt like he wanted to give up the fight. I’m so glad she could inject some joie de vivre back into his life. If anyone could do it, it would be her.

Love you, Call.

This picture says it all.

Lance had been asking for drinks, however, it is terribly humid here today. On his third request, he hesitantly held out his finger for a test.

In this photo, Lance is ready for bed, but he is really thirsty and has been going to the toilet a lot. this reading is extremely high, and says that his blood is saturated with sugar. He did have a small decrease in his insulin tonight as a precautionary measure as he didn’t eat a lot, due to the humidty.

Diabetes is like walking on a tightrope with a blindfold on and a bull racing straight towards you. If you can keep you balance, your doing well. If you lose your balance, you get back up and get yourself settled again. If the bull knocks you plummeting to the ground, you still have to get back up. Even with battle marks, you have to get back up and give it another shot. This is life with Diabetes.

You’ll never know what’s around the corner.

Insulin is not a cure.

    A reader from The States left me a comment that has been playing on my mind.

“There is something special about a boy and his dog.”

There was something about that remark that rang so true, especially in Lance’s case.

Chino, an assistance hypo alert dog in-training, has learnt a good deal about the business end of Type 1 Diabetes. If my son tries to race him, Chino will sit, motionless. He will not budge until he Lance has a fingerprick. He knows that crazy play can not happen until Lance has eaten, and insulin has been given. It has taken a LOT of work, but he has proven that he can do it!

In this photo,  Lance and his 9 month old whippet, Chino share one of many of the days embraces.. Chino has not spent a minute apart from Lance since they first met. They are just like brothers. Chino gets jealous when Lance has to do schoolwork, and Chino will steal Lance’s pencils and hide and break them. When Chino gets a special reward bone for a good alert, he will go and hide it for at least an hour and Lance gets impatient waiting for him. It just reminds me of brotherly love, as they adore each other so much, whilst having a game and a joke in the process.  It’s like “it was meant to be” that they share this special partnership.

Diabetes is a lonely condition to go through on your own. A loving family and a supportive medical team are imperative. However, to have a dog that has abilities to pre-warn my son of an impending attack is simply remarkable. I have seen him in action, as have complete strangers. Of course he doesn’t detect every single episode, but I am so grateful for the ones that he does pick up on. A little less stress for all parties concerned!

Chino also provides Lance with unconditional love. He knows that he is going to get fed everyday, get a walk everyday, have a tussle everyday, show off his social skills most days, and in return we have a beautifully behaved, quiet, intelligent, affectionate and loving dog. It is great to have him around, especially when Lance is sick. He will lie at his feet and won’t budge until he knows that I don’t have to leave the room again. It gives me comfort that Lance and Chino will grow up together and see the ups and downs that Life brings.

Diabetes is silent, and frightening when you are alone. If you have a four-legged friend with you at all times, there can be a lot more smiles than solemn moments.

After a wholesome, LOW GI, vitamin packed evening meal, Lance is in complete heaven.

It isn’t too long,however, ( I’ve timed it to be about 55 minutes later,) where he starts shuffling from one foot to the other, clearing his throat and gravitating around the kitchen like a blowfly at a BBQ.

Now I think that I’ve established what the nervousness is about. I put him out of his misery, and asked, “You’re

hungry aren’t you sweetie?”

His eyes looked down and nodded his head.

He knows that my entire day is devoted to caring for him and Diabetes, and it pains him to think of my having to resume my place in the kitchen to make him a snack. He has compassion and consideration well beyond his years.

We have tried the water crackers/low fat cheese/gherkins combo. (Not enough carbs.)

We have tried Le Rice- a dairy snack that I heat in a bowl and tell him it’s rice pudding. It’s made using short white rice of course, so it just doesn’t fill him up.

Just like that,an epiphany came to me.

I had a Fruit Bowl that looked highly enticing and very Queenslandish, with a Pineapple. spotless yellow bananas, mangoes and a smattering of grapes. My friend, Fructose!

Then I began looking in the fridge. Low fat milk. Check. Low fat and sugar free ice-cream, Check. Almond meal for extra nutrients. Weird, but check. Frozen cup sizes of fat free yogurt. Wow baby, CHECK!

I reached up high for my blender and started chopping up portions of fruit. Depending on what I have, I get uber creative, and make Watermelon, Raspberries and rabutan blend. Mostly though, he has one large banana, 1 medium mango, and 12 strawberries. (And FYI, guy at my local fruit shop, I checked my VERY comprehensive notes from one of Queensland’s BEST dieticians.) Strawberries are NOT loaded with sugar, they are in fact, jam packed with air. So for all you who have been fed the line..”Strawberries are diabetic sin food,” start eating 12 a day to make up for all the times you have missed out. A fantastic source of iron for anybody, but especially for growing bodies!!

With a splash of milk, a scoop of ice-cream and yogurt, a sprinkle of almond meal, and my fruit all elegantly placed in the blender, I turned it on. I forgot one ingredient. Ice cubes. Nothing worse than warm-ish milk drinks. Placed them in as well. It sounded like I was trying to destroy something for a minute or so, until it became a smooth, yellow batter that was more smoothie than milkshake,tipped it into an enticing glass with the bendy straw. All that was missing was a tropical umbrella.

I asked Lance to sit at the table and be my taste tester for a new summer drink. If I would have said, this is crammed with fruit and you will love it, we would still be battling out the pros and cons of why he should be allowed all of these ingredients together. I’ve had to resort to almost fully fledged lies to keep my kid out of hospital.

“So? What do you think?” I hid my anxiety well, and acted as nonchalantly as possible.

“Kate, this is the BEST, the most SUBLIME, the most TORTUROUS -TO-MY-TASTEBUDS DRINK I HAVE EVER TASTED!!! Who is it for, anyway? he eagerly asked.

“Well..it was going to be for the neighbour-she needs some cheering up, but on second thoughts, I think she is allergic to mango. You want it?”

He sucked it back and made some wonderful slurping sounds or sheer enjoyment, whilst I began calculating in my head if I may have overdone it. We would soon see. One hour until bedtime.

He took the cup to the sink, tossed the straw in the bin, and lay on the sofa, moaning and nursing his very full belly. He made a few trips to the toilet, and brushed his teeth. If I saw a 22mmol/L I didn’t know what I was going to do. Kicking and Screaming briefly came to mind.

Lance initiated the testing, and counted backwards as the strip did it’s job.

I looked at his eyes and couldn’t read his reaction.

“Is it a bit high sweetie?” I had succumbed to defeat.

” Think I better wash my hands and try again, actually..” TRY AGAIN???

He emerged from the bathroom with gleaming hands all germ free. He chose his ring finger this time, and his lancet device released a perfect. bulbous drop of the finest haemoglobin.

12.2mmol/L?

The first test- 12.5 mmol/L.

For the first time in months, Lance went to bed without feeling ravenous. The ingredients in the smoothie worked well with his insulin, his 2am reading popping up at a remarkable 7.7mmol/L. Just what it should be.

Since that Holy Day when the Smoothie was born, Lance inhales one every night, about an hour before bed.

In this photo, Lance is halfway through his miracle drink.

Diabetes is like that really annoying 2000 piece puzzle you have been tirelessly working on, only to discover that there is one piece missing. If you are lucky enough to find it, there is that momentary jubilation. Some people get excited knowing that David Beckham is in Australia. ( OK, I was a little bit as well.) However, finding that puzzle piece makes your night time and sleep so less worrisome and fearful. As I watch my son sleep, and do another test at 4.25am, I am overjoyed to discover that he is 6.6mmol/L. He is breathing solidly, he has cherry cheer cheeks and his perfect, plump lips are blemish free. He really is a cherub. And a cherub with amazing blood sugar levels!!!!

Today, Lance needed “supplies.”

After absurd amounts of finger pricking in recent times, I needed to pick up a box of 100 Accu-chek Soft Clix Lancets.

10 pricks a day at $15.50 a box of 100 works out to nothing more than a sheer nuisance. Many people ask me why I test so much. It’s the only way I truly KNOW what is going on in my son’s body. Blood sugar control between 5 and 10mmol/L also has been proven to halt complications. So that’s what we aim for.

I also needed to get Novo Nordisk Needles for Lance’s insulin pens. They screw onto the top of the pen, and are intended for one use only. The provide a very accurate delivery of insulin. As Lance is still little, (even though he told me that I wasn’t allowed to call him that now that he is 7 and all. The most beautiful part is that without intention, my face obviously showed glimpses of hurt. He quickly recanted and said: ” Well, you can still call me that. I guess I am your little boy still, so it makes sense.”

I digress.

As Lance is still little, he is able to get away with having a six millimetre needle inserted into his stomach, which in reality is miniscule and not so visually disturbing for him.

The NDSS allow you to take one box of 100 home per visit to an affiliated pharmacy.

This means that we are regular visitors, collecting more insulin pen needles. Sigh. When you account for at least 4 a day, you don’t even see out the month without having to fill out paperwork and get a new box. Still, considering they are free, I dare not complain.

In this photo, Lance’s tiny hands hold the equipment that will “lance” his fingers up to 10 times a day, and penetrate his stomach so that insulin can be injected at least 4 times a day. This equipment looks innocent enough, however when I look at his fingertips and injection site on his stomach, I realise that without them, and without the NDSS Government Scheme, Lance would not be alive.

Diabetes always requires a huge monetary strain just when you DON’T need it. My Grocery bill has doubled because of the introduction of Gluten Free foods. Lots of people ignore their diabetes and complications because they simply can’t afford the medical expense. Not to mention how the 140 000 Type 1 Diabetics affects the economy of Australia. Not only is it deadly, but it is a very expensive “lifestyle” to maintain. The Federal Government does take this into consideration, and I am so grateful for getting insulins that retail at $500 for $5. However, Insulin is not a cure.

Lance has alway suffered from sore legs and leg pain as a result of being a diabetic.

The pain usually escalates when his blood sugar is in the 20mmol/L area.

I guess because his blood is pumping through his legs as a toffee-like concoction.

Regardless, he is flattened by the the leg pain, until extra insulin is given and the water flushing commences.

In this picture, Lance is miserable with the “ache.”  It is relentless, no medications assist. This is a common position for us, his leg in my lap, whilst my hands kneed at his knees, his thighs, his calves, his ankles, his toes and his feet. These days he doesn’t even need to tell me they are sore, he simply sits beside me and I commence rubbing, without a second thought.

Diabetes isn’t just about insulin therapy, there are lots of  symptoms that accompany it. Headaches and light sensitivity when low, pains in the stomach and leg pain when high. These are just a few that I can think of, but they are Lance’s top 4 symptoms.

A listless little boy lying beside me with either or both legs in my lap is a common scenario. Most often, after consuming  food. His legs ache during the night, the only thing that allieviates the pain is to lower his blood sugar, (which is not always the ideal or  SAFE thing to,not in the middle of the night, anyway.) Massage is the only thing that provides some relief.

Diabetes affects the entire body in one form or another, maybe not now, but after many years, is would be very easily said that”Diabetes has ravaged my body.”  At 7 years of age, it is cruel that this is already starting. Lance needs a cure, and if not a cure, a pump to allieviate the see-saw -like up and downs.

Insulin in not a cure.