Archive for March, 2008

On Hold

I am so frustrated.

My PC has officially been opened, operated on and declared unable to be revived.

This means that until I find a replacement, sadly, my posts will be few and far between.

I do intend on going shopping this week, so I should be back on line during the first week of April.

Until then, keep testing, and fighting, and measuring, and hoping.

 

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Warning:Internet Adverts Guarantee A Cure For Type 1 Diabetes

Curiosity is a symptom of human nature.

I’m the first to admit, that when I was new to researching ways to help Lance via the internet, I was inquisitive about the advertisements that claim to be able to cure Diabetes.

The info Doctors Don’t Want You To Know.”

Whilst I am very open to a healthy balance of Western Medicine and alternative treatments, I am alarmed and frightened by some current advertising material cirulating around the internet.

I have had a Director of a “Wellness Centre” contact me, giving me a guarantee that he could CURE Lance’s Type 1 Diabetes through fasting.

I have no doubt that there are some establishments that reap fantastic results with weight loss and increasing fitness with those who live with Type 2 Diabetes, no matter if they manage their condition through diet and exercise, oral medication or insulin. I have witnessed sessions in a current trial that involves weight training for people over 60 with Type 2 Diabetes; as a result, their alarming blood sugar levels have dramatically decreased, as has their weight, their cholesterol and in some cases, their depression. I was highly impressed with what I saw, and the fact that the participants wanted to continue returning indicated that they were feeling better in themselves also.

So, when I received an email, informing me of two people with Type 1 Diabetes suddenly having natural insulin function again through a “fasting” regime, I put it down to a common mistake-people often assume that because a person is on insulin injections that they have Type 1 Diabetes. I replied and thanked the author of the email for their concern, but informed him that my son’s pancreas no longer makes insulin. Over. Kaput. Finito. We exist on a lifestyle of frequent injections and a carefully prepared diet and exercise program. I expected that to be that.

However, I soon received more correspondence from the same person. He went on to say that doctors basically have no idea what they are doing when they make a diagnosis such as Type 1 Diabetes, and that he guaranteed that if I invested in his program,that my son would regain full insulin function. Through fasting.

He went on to say that the body had the ability to heal itself, no matter what the condition may be. He was positive, from what he had read from my posts, that he could “kickstart” Lance’s pancreas into producing insulin again.

“No more injections, Kate!! Can you imagine the freedom?”

He went on to say that Heart Disease and Cancer were not the leading causes of death in the United States, but from errors in diagnoses made by doctors. He then said that if, I decided to participate, and join the program, that my 7 year old son would have to fast for over a week. I sat in sheer horror, as my mind envisaged what ramifications would occur if I actually allowed that to happen!!

The rest of the email was bagging Western Medicine, and jam packed full of claims that Diabetes isn’t this big, scary disease that people make it out to be, and that it is totally treatable and curable. I was irritated, but I soon became enraged when I imagined this person contacting the mother of a newly diagnosed child, or a young married woman seeing her husband off at the “Wellness Centre” imagining how their life could change if he was cured. Or a teenager, whose hormones had reaked havoc with every facet of their life, inluding their blood sugar levels, heading off to commence this program in desperation.

The terrifying part is that the claims in this spiel were impressive enough for someone who wasn’t totally aware of their condition to say, “I can be cured! It’s a miracle!”

I guess I’m giving a serious warning to those who step outside the lines and look for alternate methods of healing-when it comes to Type 1 Diabetes- STOP NOW. Fasting and Type 1 Diabetes is like giving a huge slice of pie laced with crushed peanuts to someone with a deadly peanut allergy. Never doubt that your Diabetes Health Professionals have your best interests in mind.

As hard as it is to see it written, THERE IS NO CURE OR MIRACULOUS FIX FOR TYPE 1 DIABETES.

Fasting will see you in the grasp of severe hypoglycaemia within a few hours, and, diabetic coma is around the very next corner. The worst possible scenario is that you will no longer be a member of the Wellness Program, because your family will be organising your funeral.

If you are contacted by ANYBODY making claims that they can guarantee a cure for Type 1 Diabetes, ignore it, or better still, report it.

These companies are advertising and promoting themselves on email sites as I write, and, as a person who cares passionately and intensely for every person who has to live with this condition, I can understand how appealing it would be to say, “Hey, what the heck. Can’t hurt to see what it’s all about? It’s not like there’s a cure anywhere in near sight..”

It’s so evil to entice people who live with Type 1 Diabetes to risk their lives that they fight so hard to live.

Be warned; there are different variations on the same theme, it’s not just the person that contacted me, there are others’ also who have jumped on the same boat, and are promising something that can never happen.

We all have had an ordinary or infuriating experience with an unfamiliar doctor, or in an emergency ward at a hospital. However, remember the doctor who diagnosed you or your child.. without their understanding of the endocrine system, the symptoms of Type 1 Diabetes, and administering that first injection back into an insulin-starved body…

I shudder to think what could happen.

It’s great to explore and learn more about Diabetes through others, however, I implore of you to trust any suspicion you may have, and stick to reading the many awe-inspiring blogs, written by carers or people who live with Type 1 Diabetes. They are the true experts.

 

 

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Can You Use “Staples” And “Wee” In The Same Sentence?

Lance woke up this morning and we had our morning hug.

I asked him what he wanted for brekkie, and he decided on toast and an apple juice.

I heard the toilet flush, and before I could say “Wash your hands!” the shower was running!

The bathroom door was shut.

I gently knocked at the door and asked if I could come in.

  I heard a little “Alright..”

In amongst a cloud of warm steam, and stepping over pyjamas strewn from one end of the bathroom to the other, I found my Lance sitting on the shower floor, grimacing in pain.

Sweetheart! What’s happening!” I exclaimed.

“Well…it’s just that when I went to the toilet, it felt like there were staples coming out. It really hurt, Mum, and my belly hurts a little too.”

Ahhhhhhh. The infamous Urinary Tract Infection, otherwise known as Cystitis. This temporary and treatable condition LOVES people with Diabetes.

ouch..hurry..come on, man!

He got out, and I cocooned him in a big, fluffy bath sheet. When he was younger, he was plagued with this condition, I’m surprised he didn’t remember the pain from all those years ago.

“Do you want the good news or do you want the good news?” I playfully asked him.

“Good news..”he said in a quiet voice, trying very hard not to laugh.

“Well, the good news is that there is medicine in the cabinet to kill the bugs that are giving you this pain.”

“The gooder news…”

“The better news, Mum!…”

“Oh, sorry, yes. Where was I. Oh, and the other good news, is that you’ve had these before, I’ve had them before, most people at some stage in their life have had one. It’s called an Urinary Tract Infection. Urine is the medical word for ‘wee’.”

He sniggered as he heard me say “wee,” and repeated the word urine several times as I made my way to the kitchen. 7 year old boys love toilet humour…

I returned with a tray with breakfast, insulin, and a jug of water.

No words were exchanged about the water, the “OH NO!” in his eyes said it all.

“Don’t panic, just a cup, everytime you think of it, ok? It flushes away the bugs, that’s all.”

Luckily, I had some Ural sachets, that usually do the trick when it comes to clearing this problem. It’s only been a few times that I have had to resort to antibiotics. It’s amazing how much I retain in my memory for emergencies…the last time he needed Ural, I remembered thinking…”Hmm. These are a must in the diabetes medicine kit. It’s not like he’s never going to have this problem again…”

As I prepared the first dose, I had to laugh to myself that it was a Saturday, and Easter Saturday at that. Why do these things always manifest themselves at night time, on the weekend, or on a public holiday?? It is positvely poetic.

Not knowing that it was Ural, (which tastes a lot like bicarbonate of soda and lemon, it simply neutralises urine and eases “that”unmistakable pain) he unknowingly took the cup of me, and drank every drop.

His head flung around and  glared at me,with fury burning in his eyes, and said, “Why did you give me that disgusting stuff for? That was so repugnant! Bleccch!” (With some gagging and coughing sounds for extra effect.)

He quickly reached for his cup and drank down two glasses of water in a row. Ahhh..it’s days like this where all of the pain and sleepless nights over the past 7 years have taught me well. Things were going swimmingly. (Hmm. Bad adverb to use for this condition.)

Cystitis’s Best Buddy

I did feel so bad for him as I heard OW, OW, OW’s” coming from the bathroom every once in a while.We sat together for most of the day, watching feel good DVD’s, as he held a hot water bottle to his tummy. Secretly, I know he loves it when I make him a bed on the sofa, and dash after his every requirement. He did look a little flushed though…Just in case, I thought I’d take his temperature.

It was 38. Great. Not bad, but not in the normal range either. Slightly elevated may be the appropriate words to use in this case.

His blood sugar level was a little higher as well, which I totally expected. Lots of 13’s, 15’s, 14’s.

Around evening time, I started to become paranoid that if I didn’t get my repeat script of antibiotics filled,  knowing the curse of weekend Diabetes-related ailments, we could face Easter in hospital if I didn’t play my cards right. I hurriedly flicked through my ridiculously large box of repeat scripts…there were scripts for oral thrush, anti-fungal cream, oral antibiotics, glucagon, insulin, cough syrup, anti-vomiting syrup..you name it. All in the name of Diabetes Management, Amen.

The jug of water was almost empty. He had done very well, and as I always tell him, he can do anything that he puts his mind to. Even if it is “repugnant.”

He emerged from the toilet a little while later with a smile on his face.

“Mum, it doesn’t hurt anymore to go to the toilet.”

“Does you tummy hurt anymore?” I asked cautiously.

“Nope!” he said proudly.

The only trouble, was that I really wanted him to have one more dose of Ural. I mixed it up, and laced it with lemon soda.

“What’s this?” he asked.

“Lemon Soft Drink.” I casually replied.

He took two big gulps.

I could hear him thinking. I was ready for the onslaught….

“MUUUUUM! It’s got that stuff in it! You played a bad trick.” He was very annoyed.

His lips were zipped tight. He probably got the dose down anyway in what he had consumed. Ha ha.

His temperature was back to normal.

His blood sugar was actually low.

He had three more visits to the bathroom with no more “staples” causing him problems.

I’m REALLY hoping that tomorrow will be trouble-free…PLEASE???

 

Symptoms of a Urinary Tract Infection In A Young Child With Type 1 Diabetes.

  • screaming whilst passing urine, during and after, whether it be in a nappy, potty, or toilet.
  • the first passing may be brownish in colour.
  • lower abdominal pain
  • fever
  • high blood sugar levels.
  • irritability
  • redness of the area
  • grabbing at the crotch area, with noticable discomfort.

  • Until you can get to a doctor, or seek medical advice, start your child drinking water immediately. The more, the better.
  • Keep a close check on blood sugar levels. They will more than likely be higher than normal, or really high, so don’t panic (too much.)
  • Check for elevated temperature. (Normal is 37.1 degrees)
  • Avoid all sugary drinks and foods. The aim is to kill the bugs that are feasting on sugar in the first place.
  • Some children are naturally susceptible to UTI’s, so it is handy to always keep medicines prescribed or recommended by your doctor, and start treatment straight away. (Your doctor NEEDS to know if this is a reoccuring problem.)
  • Teach boys how to keep “that” area clean, especially those who are uncircumcised, and the ” front to back” wiping technique with girls.
  • Keep a bottle of cranberry juice in the cupboard or fridge, it is also a great tonic for UTI’s.
  • Avoid acidic foods, such as tomatoes, citrus fruits, spices.
  • Offer Children’s Panadol in the correct dosage for abdominal pain (if no allergies are present to paracetemol.)
  • Comfortable, loose clothes, (no underwear!) is a must whilst going through this condition.
  • 100% cotton underwear is best for kids who are prone to this condition.

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Lance And The Cruel Jibes About Having Diabetes At Easter.

Tomorrow is Easter Day, its proper name is Easter Sunday.

I don’t care that I have Diabetes. I don’t care that I have to have needles. I don’t care that I have to see the doctor. I don’t care that I have to wear my shoes everywhere. I don’t care about fingerpricks, I don’t care that I get bad headaches and leg pains. I am tougher than Diabetes.

But yesterday I wasn’t.

I have two new friends. They are brothers. One is almost 10 and one is almost 8. So really, he is still 7, like me.

They come over to my place, and they love to jump on my trampoline with me, and we play cool games together. Yesterday we were playing bike shops. I was the bike salesman, and they were coming to buy my bikes with fake money.

Then the 10 year old said, “Ohhh! We have to go with Mum out to that farm to get some straw! Remember? We have to make our Easter nests!

We make an Easter nest too. And we leave out a carrot and a glass of milk.

But then the 7 year old boy said to me, “Lance, Easter is the best time of the year for me. I get to eat as much chocolate as I want. Last year, I ate so much that I was sick from it. My vomit tasted like pure chocolate!”

I told them proudly that I didn’t get chocolate, but that I got other cool stuff instead.

Then they asked why I got cool stuff and not chocolate.

I told them I had Diabetes and that it’s best to stay away from chocolate.

They looked at each other and laughed.

“Pfft. Lance, you’re the only kid I know who doesn’t get Easter Eggs. And, you are the only kid I know that has Diawhatsis. What is that, anyway?”

I don’t know why, but I felt like crying.

I said, “It’s Diabetes. I’ll get my Mum and she can tell you what it is.”

The ten year old said, “Boring! No no no no no, don’t bother. I don’t wanna KNOW what it is. It sounds creepy but. Everyone eats chocolate, and you’re the only one who can’t!”

My mum came out and told the boys to go home, because I had to have my insulin and dinner. I started to cry, because when they left, I heard one of them say “Freakazoid.”

Mum is mad. She has written their Mum a letter. She is going to give it to her on Monday, after Easter.

Anyway, last year, someone DID give me Easter Eggs, and I was allowed one a day. They made my blood sugar go up so fast, that I gave them to my best neighbour, because she loves chocolate. I hated feeling sick everyday.

The Easter Bunny always has bought me stuff, that’s almost better than what Santa brings!

But for the first time, yesterday, I hated having Diabetes, and I did feel like a freakazoid.

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The Unspoken Words Between Carers

In 2006, Lance was a shadow of the robust, handsome wordsmith that he is today. He was nominated by an anonymous member of the community to receive a gold medal and certificate at the annual Lion’s Club Children Of Courage Awards.

Courage and Kids

This year, he was invited back to receive a Bravery award as he was acknowledged by members of the Lions Club for the awareness he has created and the passionate stance of making others aware of the differences between Type 1 and Type 2 Diabetes since receiving that first award as a 5 year old.

We took our places, whilst I read the procedings for the afternoon. As my eyes ram down the page, I was temporarily stuck on one name-MINE!! My name, with Special Guest Speaker written in bold print beside it. I had agreed to bring Lance’s assistance dog, and for him to receive his certificate, but NO mention had been made of  an impromptu speech!!! I looked around for the Secretary in desperation, hoping that I could catch his eye and ask him what exactly he wanted me to “guest speak” about. Alas, he wasn’t there, and procedings were about to commence.

I have spoken in public on more occasions than I care to remember. In fact, I LOVE getting on my soapbox and speaking about Type 1 Diabetes and the misconceptions surrounding it! I have performed the lead role in plays, musicals, performed and conducted in concerts in front of thousands of people and taught a variety of ages in a variety of subjects. I am lucky enough not to experience nervous moments, especially when speaking about something as passionate to me as Type 1 Diabetes and Lance.

However, I had been caught unawares…I quickly grabbed my Dad’s obligatory JDRF pen from his pocket, and began scribbling some notes on my program, quietly seething as the seconds ticked away.

The presentation had begun. There were approximately 10 recipients, all who suffered from shocking disabilities that caused much hardship to their families, and from which there was no escape. Yet every little face was dancing with bright, proud eyes and beaming smiles.

 The boy in front of me was my own secret hero. At the age of 5, he found his mother unconscious in her bed. Except she wasn’t unconscious. She was in a Diabetic Coma. He had been taught by his Mum how to call 000 in an emergency ( for American readers, 000 is our equivilent to 911,) and remarkably, he recognised that his Mum was  not just sleeping, and called the ambulance immediately, undoubtedly saving her life.

I clapped with fierce pride as he received his well deserved medal and certificate. I listened to the adversities that the other children had been through. I recognised the exhausted, empty eyes of their parents, and their lifeless expressions. I felt as though I was with like-minded people, who understood the trials of caring for a child and a life threatening medical condition, day in, day out.

Then I was introduced to speak about who knows what.

There was thunderous applause as I made my way to the podium.

Oh boy, what am I doing up here!!!! I’m gonna have to bluff my way through this one…

A few camera flashes went off, and I gazed at the sea of faces, all waiting in anticipation for me to speak.

I saw Lance, standing up in the corner, giving me the “thumbs  up” sign. He was as proud as punch.

I began in a clear tone, ensuring that I was projecting my voice to the back of the room.

“2008 marks my only son’s 6th year living with Type 1 Diabetes. Many people think that a change of diet can irradicate this metabolic disorder, or that insulin is a cure. It’s not. Insulin certainly keeps people who suffer from Diabetes alive, but it must be administered by injection, several times a day. Therefore, 2008 equates to over 6000 injections in my son’s short life.”

( I have written this speech many, many times. I didn’t need notes-it was just a matter of recalling out loud the many letters that I have written to politicians in my time.)

“Without a cure, my son faces blindness or irreversible eye problems, kidney disease, stroke, early heart disease or even limb amputation. I work tirelessly every year to ensure that his twenty-first birthday present sees him about to embark on an overseas trip with friends, and celebrating his newly discovered independence. I have a deep passion to ensure that potential complications that arise from Type 1 Diabetes are halted, and I want the same for the 5 children who will be diagnosed today within Queensland….”

I stopped, and the room was silent. My throat was tight. Tears were spilling down my face,staining my notes that were covered in scrawl.. What was happening? I continued to try and speak, however each word was choked with grief. I felt my chin begin to tremble, and I soon began sobbing. I was inconsolable within seconds.

The silence in the room was deafening. I held up my hand, trying to give a sign to the audience that I was trying desperately to compose myself. I turned my head and buried it in my long hair, and the sobs soon became audible. I didn’t even care who heard them. There was another prolonged moment of silence. Out of the corner of my eye, I saw my father stand up from his seat, hurriedly approaching me. He tried to take my notes away from me, and attempted to take over. I pulled them back, and smiled at him through my tears. He embraced me warmly, and it seemed to recharge me. I felt as though I owed Lance to finish what I started. My Dad stood with me as I recommenced-I was annoyed that my voice was still quivering.

“Lance received this award when he was 5 years old. It gave him a tremendous amount of self-esteem and he recognised for the first time that he was a child that possessed an extraordinary amount of courage. He has since appeared on National News, appeared in various articles in many publications, and has spoken live on radio in an attempt to raise awareness about this often misunderstood condition.”

(I tossed my hair with confidence, and cleared my throat as an indication that I had fully regained composure.)

I went on to mention how Lance had visited Parliament House in Canberra, Australia to speak directly with Hon Ian Macfarlane MP. He asked him face to face if he would promise to remember him when the Federal Governnent  allocates funding at budget time to medical research. He did promise to remember Lance. My little boy was then fortunate enough to listen to our previous Prime Minister speak about the cruel nature of Type 1 Diabetes, and how much respect he had for the parents of young children living with this condition. Lance then had a photo with him. It was a moment that spoke volumes.

I proudly announced that through sheer determination and patience, that my son, under my supervision, had doorknocked, and raised over $2000 for JDRF Australia in May 2007, which is National Jelly Baby Month. In total, through my letter writing, and from my son recounting his story to various members of the community, he has raised over $5500, which goes directly to finding a cure, through developing trials, and funding groundbreaking research that enables scientists to unlock the mystery of why Type 1 Diabetes is becoming the silent epidemic.

I then introduced Chino, Lance’s Assistance Dog, who was fast asleep in the sun that was streaming through the window. People were fascinated about how Chino allieviated Lance’s distress during hypoglycaemic attacks.

At last, I concluded. I looked up, and saw many red noses and tear stained faces. Parents, children, Lions Club members alike, had all felt the pain that had inconveniently decided to emerge at such an inappropriate occasion. The whole time, my beautiful son stood beaming at me, willing me on by continuing his thumbs up sign, this time with both hands. As I took my place, he wrapped his arms around my neck,and planted a kiss on my cheek, which set off the row behind us. There was much snortling and blowing into tissues.

After the procedings were over, there was an afternoon tea. Lance was less than impressed with a plate of just fruit, as everything that looked delectable would have been full of sugar, but more importantly, made with wheat flour.

I spoke to many people who commended me on my speech despite the unexpected mini-breakdown. A lady came and told me about her mother, who has had Type 1 Diabetes for over 40 years, and how she had no complications, and led a full, happy life. I nodded politely, declining to tell her about how difficult these new developments have made our life. (You will never know just how much food contains gluten or wheat until you spend an hour in the supermarket reading labels…)

The highlight of my afternoon was speaking to the young hero who saved his Mum from a possible fatality. He is now in his first year of high school, however, he remembers that day as if it happened yesterday. He told me that he can look at his Mum, and know immediately if she is hypo, he virtually matches the glucometer everytime. Tragically, he told me that  both of his mother’s kidneys are failing, and that she is quite unwell. His grandmother intervened at this point and suggested her grandson get something to eat. He was hesistant to leave, but soon found Lance. ( I was touched yet saddened to see him out of the corner of my eye feeling Lance’s skin for clamminess, and suggesting that he should have a drink after such a long ceremony.) His grandmother told me that it was exactly 21 years after diagnosis when her daughter’s kidneys began to show abnormal results in her 3 monthly urine tests. She has deteriorated very quickly, and for a brief moment whilst she was speaking, I felt like I recognised this woman. I studied her face, and suddenly realised that she was me, only 30 years older. There was pain etched across her face as she admitted that she no longer had control anymore over how Diabetes effected her daughter’s life, and in hushed tones, how things weren’t looking good for her; the doctors had told her that by the time a transplant was a possibility, that she would be long gone. I looked at her grandson, who had returned, and quickly changed the subject, changing the focus onto his newly aquired medal, again showering him with praise for his heroic deed. 

His grandmother shook my hand upon departing and she concluded with, “Yes, that Type 1 Diabetes is a beggar of a thing. The trouble that it has caused… I’ll pray that your son has some incredible breakthrough to look forward to. But yes, it’s just taken over, it will leave me without my daughter, and my grandson without a mother. It’s a hard life, Kate, and personally, I’ll be glad when it’s over, for her sake. There’s only so much that a person can go through, and she’s had more than her fair share of suffering.” Her voice trailed off, and she took her grandson’s hand, and told him how they were ready to leave.

As they walked out the door, the boy turned his head, and gave me a knowing smile. He and I had something in common, that was an unspoken secret . We are both carers of a loved one with Type 1 Diabetes. He had grown up, nursing his mother through hypoglycaemic attacks, and living the reclusive life of a carer. He was growing anxious to return home to his Mum, his medal and certificate were now secondary. He was more concerned for his mother’s wellbeing whilst he was gone. I knew exactly how he was feeling, no matter how wrong it was that a 13 year old cared for his mother on a full-time basis, I identified with him, as I find it difficult to enjoy myself after a certain amount of time away from Lance.  Horror scenarios begin to run through my head, and even though I berate myself for doing it, I will often ring up my parents and ask for a blood sugar number. So many times, he will be 5 or 6 mmol/L, and my father will reason that he is in fantastic spirits, and how there is nothing wrong with him. However, Lance knows that 5 or 6 mmol/L means drop everything and get something to eat.

I learnt a lot that day. I realised that people who care for or live with Diabetes speak and understand a silent language.

This post is dedicated tp my new 13 year old hero, who has not only saved his mother’s life once, but probably does it regularly by monitoring her blood sugar levels and treating hypos regularly, but without the recognition.  I’m not sure if he is aware that Diabetes will ultimately take his young mother from him soon, but his courage and unconditional love for her was so touching and a rare quality for a 13 year old to possess-I hope I find him again in my travels.

                                                                                          

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My Son-Growing Up And Asking Questions About Type 1 Diabetes.

I have not been able to bring myself to write lately. Lance has had a massive learning curve, and he is starting to piece things together about his Diabetes, and Type 1 Diabetes in general. He has been asking questions about what it would be like to “free” from the condition, what does a hypo look like from my eyes and why Type 1 and 2 Diabetes have the word “diabetes” in their condition title, when people living with the conditions mostly have very different circumstances.

I am able to satiate his curiosity most of the time. However, he knows about the dreaded  severe hypo, and the emotions that remain in our home from the aftermath. He has been hospitalized from severe seizures where doctors feared brain damage, he has been on drips containing saline and dextrose to get his sugar levels back to normal as quickly as possible. He has “lost” a full 24 hours after recovering from the intense side effects of a glucagon injection. He was even “asked to leave” from his preschool due to the mounting pressure and the constant threat of hypos that required emergency assistance. “Burnout.” That’s what I was told. The staff were suffering emotionally and not devoting as much time to the other children  as a result of my son’s hypoglycaemic episodes. Holidays have been cancelled, he collapsed after boarding a plane, and he has silently suffered from the symptoms of hypoglycaemia in an attempt to reduce panic at social functions. On many occasions, he has no clue about what is happening to him, and he is unable to communicate that he needs sugar immediately. His brain is severely depleted  of sugar, and a simple task such as pouring a drink becomes a confusing and difficult matter. I don’t get my son back until his sugar levels are replenished.

So, I decided to show him what a hypo looked like. He may be only seven , but I feel that he needs to know the truth about his Diabetes, no matter how difficult it is to look him in the eye and tell him that he may have to wait up to 10 years for a potential cure, even longer. It’s no use sugar coating it (bad pun..!!) because his endocronoligist speaks very openly about uncomfortable topics. Lance can also read very well, and he has picked up on enough information regarding the importance of wearing shoes, just from reading an old story in a JDRF magazine.

My paediatrician gave me a fantastic video about 4 years ago about severe hypoglycaemia, and when it’s appropiate to use glucagon. It was given to me as an educational tool, in an attempt to create awareness with anyone that Lance may come in contact with, such as the preschool staff. I viewed it again recently, and as cringeworthy as it was to watch, I decided it was time to sit down with Lance and let him see it for himself.

I asked Lance a few weekends ago if he could spare 2o minutes to watch  a video with me. First of all, he was horrified that I didn’t have a copy on DVD, but he soon recognised the orange kit on the front of the case, and the Novo Nordisk logo and he immediately slipped his shoes off, and seemed interested enough that I felt comfortable to put it on. I was nervous, yet interested about his reaction to something that has such a stranglehold of his life.

The video starts of with bad Casio documentary style music, with the commentary provided by a man with a jovial English accent. ( I later discovered from the credits that he is an endocrinologist .)  It commenced with a brief  explanation of what Type 1 Diabetes is, and how the body needs insulin to remain functioning, and ultimately, alive. There were diagrams that showed how insulin unlocks cells to provide growth. It also showed what happens when the blood is saturated with sugar. These visual representations were extremely beneficial in assisting Lance with understanding HOW Type 1 Diabetes becomes a diagnosis, and rapidly becomes a lifestyle.

Next, was a scene, showing the dangers associated with not following a strict routine, and the perils of mild to medium hypoglycaemia in  a twenty- something woman with Type 1 Diabetes.  She had slept in as a result of hitting the snooze button a few too many times. She awakens, startled, and begins to panic, as she has to rush to work, with less than 40 minutes under her belt. Her glucometer is set up beside the bed, however, she neglects to check her first blood sugar of the day. Lance picked up on this straight away, and hit the pause button whilst we discussed what she should have done. I was so impressed that he had been observant enough to notice the glucometer, set up and ready. I asked him to press Pause whenever he saw something that could be potentially dangerous, or that could lead to a hypo.

He left it on pause.

 I asked if  had spotted something else.

I had to bite my lip to avoid bursting into coniptions of laughter.  ” Look at her! She’s just got out of bed afer a relaxing sleep, and she’s running around like a chook with it’s head cut off!!”

Again, I commended him on noticing that she was rushing. therefore panicking, which would evidently send her blood sugar levels up.

We recommenced viewing.

The subject then rifles through her wardrobe, looking for something to wear. She mumbles in frustration that she cannot be late for work as she has a presentation to deliver that day. After finding an ensemble, she pushes her way into the kitchen, and begins to prepare coffee. She then clumsily pours a cereal resembling Special K into a bowl, but realises that she is wasting precious seconds as she should be on her way to the bus at this stage.

She bustles into the bathroom, and hurriedly applies makeup and runs a brush through her hair. The commentator reminds us that her stress levels are escalating as a result of panic. She pulls an insulin pen from a makeup case, and quickly administers her daily insulin.

Pause…

“Um, she didn’t count to 5 when she gave herself that insulin-some could have come out which could make her high later..”

Another tick, that was a really important point! Many people hurriedly administer their dose, when in fact, slow and steady wins the race, especially when you rely on your insulin doses via syringe or pen.

Play.

She grabs her bag and has a few gulps of coffee, and a few mouthfuls of cereal, most of which ends up on the floor. She locks the door and hurries to her bus stop.

Pause.

Lance looked at me with eyes like saucers.

“Coffee for breakfast! No carbs in coffee!”

He clung to my arm and continued watching through his fingers. He knew the subject was bound for trouble. It was like he was watching a horror movie for the first time, except he knew where the twists  and disasters was looming.

To cut a long story short(er), she actually manages to get to the bus stop where the bus is waiting .(Again we had Pause; this time she was chided because she was running across a busy road and didn’t look to the left or the right! I reminded him that running with no food and insulin absorbing and gobbling up what glucose was in her blood was asking for a hypo. He nodded with the utmost seriousness and we recommenced the riveting viewing.)

At 9.20am, she arrived at work, and headed straight to her office. She unpacked her briefcase and commenced her work. The clock was showing fifteen minute intervals lapsing, ticking away. Still, it had not occured to the subject that she needed to eat to avoid a hypo. Lance was just waiting for the BOOM.

At about 5 minutes to 10, she began squirming in her chair. She rubbed her eyes and grimaced-the uncomfortable pre-hypo warning had arrived. She was yawning and could barely hold her head up. Lance picked up on the symptoms immediately, despite the less than average acting.

“Oh! It’s starting Mum! Even though we can’t see it, she will be so hungry, too…”

Lance was on the edge of the sofa. He was vocally begging her to get something to eat. He reminded me of someone barracking for their favourite football team who screams at the TV in frustration.

Her vision becomes noticably blurry, and she frantically attempts to slide open her top drawer, which held a very impressive hypo stash.  She frantically tears open a sugar-laden bar, and begins to push food into her mouth hurriedly. The makeup team affiliated with this project had even gone to painstaking trouble of making her appear almost ghost-like, complete with sweat beads dotting her upper lip and brow. We were then frozen on that image, whilst the commentator recalled everything that lead up to the hypo-which were almost all of the symptoms that Lance had detected.

The commentator accentuated the fact that this was a mild to medium hypo, as the subject was able to recognise the symptoms and treat herself. Lance exhaled a sigh of relief.

“Oh Mum, that was so stressful to watch! I just wanted to scream at her what she was doing wrong!” Lance exclaimed, shaking his head incredulously.

Next was Subject 2. This case study was not so fun to watch. It conjured up memories that are almost identical to what Lance has been through on so many occasions. Still, I was surprised at his enthusiastic response to the first example, so I was more than willing to watch the severe hypo, no matter how painful it was.

The commentator introduces a man in his 30’s. He is married and has decided to spend the afternoon in the garden.

He begins digging and working, with no sign of a hypo pack or any food storage containers nearby. He is really putting his back into it, and seems determined to get as much done as he can.

In the next scene, he is chopping wood. We are then introduced to his wife and her inner voice. She looks at the clock and notices that he has been working non-stop for two hours. Along with her perplexed expression, her inner voice mentions her concern for her husband’s wellbeing.

“Hmm. It’s been a while since Peter has come up for a drink or something to eat.. I better get him something..it’s been over two hours….”

This scenario wasn’t as predictable as Subject 1, so Lance sat in silence, carefully studying what was going on.

Meanwhile, the exasperated commentator mentions that Peter was determined to get some concrete slabs removed from his garden.  His wife was upstairs, making rosettes with radishes and other vegetables, completely nonplussed that her husband needed carb rich foods or a drink immediately to avoid a potential disaster. It was a very good representation of the lack of urgency and constant monitoring that is required when a person with Type 1 Diabetes is not being observed or enouraged to replace carbs when undertaking exercise or strenuous activity. The subject also showed no concern about his lightheadedness, and continued on, never once considering that he needed to perform a fingerprick or replenish his carb intake.

Pete’s wife heads downstairs, and the camera focuses on him. He is teetering about, barely able to stand. His head is spinning and it is very difficult for him to help himself, or call for help. due to the confusion he was suffering at this stage. He is greeted by his wife who hands him his gourmet salad (no one familiar with caring for someone with Type 1 Diabetes would offer salad vegetables as a recharge snack!) He stares at her blankly, and he  falls to the ground with a heavy thud.

Lance swung himself around and looked at me, with a shocked and concerned expression on his face. Little does he know, and I am so grateful that he doesn’t remember, that he has been in the same situation on countless occasions-the only positive of a severe hypo attack is that he has no recollection of the trauma his little body has to go through.

 Wife carefully placed her salad away from the emergency scene, and shook her husband, calling his name, with no response. Inner voice returned, recalling, “I remember the doctor gave me a kit for situations like this!” She races up the stairs and rummages through her handbag. She finally stumbles across a Glucagon Kit, Inner Voice expressing how nervous she was at administering this life saving injection for the first time. The commentator takes over and establishes that Wife is overcome with panic and has had no precious experience with admimistering glucagon. Commentator then shows the precise, easy to understand instructions that are in the inside lid of every Glucagon Kit. Wife then follows the instuctions step by step, places her husband into the recovery position, and gives the injection into his arm. She stays with him, trying to rouse him whilst the injection is kickstarting the glucose stores in the liver that will now release into the bloodstream, allowing his levels to get him within a normal range, and so that he eat something that is low GI and prevent another attack from occuring.

The next scene shows Husband, sitting up and eating some sandwiches and drinking a hot drink. (The salad is thankfully nowhere to be seen!) Lance was silent during the glucagon scenes. After a while, he said to me in the sweetest, saddest little voice, ” He did die, didn’t he Mum. That’s why you love glucagon so much, in case I die.”

I hit stop on the remote and quickly explained what being unconscious meant. I drove home the fact that the man was certainly not dead, but that his body was in desperate need of sugar. I also told him how dangerous it can be to give food or drink to an unconscious person, and that’s where glucagon steps in and saves the day, everytime.

“So, is that what I look like when I have to have the orange needle?”

My stomach was churning, and I could hear my voice start to quiver. I finally replied, “No, you look like you! But glucagon is a very, very important friend to you. In an emergency, like when the hot weather comes? Hypos are sneaky-even you don’t know they are coming. That’s why I love glucagon, because it gets your levels in a safe zone when you can’t do it for yourself..”

He nodded and looked down.

“So I guess I had better test myself as often as I can then, especially when I am running with Chino or jumping on the trampoline?”

I smiled. “That sounds like a fantastic idea. I’m glad you don’t think I’m hassling you when I come to do finger pricks whilst you’re having fun.”

“I don’t ever want to look like that man. I don’t want you to have to worry about that needle so much either. I never think you’re hassling me, I know that you’re just keeping me safe.” my son reasoned.

“Sweetheart, I’m sorry if that was hard for you to watch. I never want you to worry, because I always am watching and listening for you, and I get a sense, or a feeling when it comes to your levels. If you are away from me, I can sense if you are hypo, or if you need some insulin. I know you so well, sweetheart. We just have to stick together.”

 I felt terrible that I had exposed him to something that may have visually and emotionally disturbed him.

Later that day, we were walking home from taking our dog for his gallop.

I was still reeling at Lance’s reaction to the glucagon scene. However, he always amazes me with his acceptance and maturity when it comes to uncomfortable subjects.

“Mum, thanks for showing me what a hypo looks like. Now I know. Maybe I can help someone else now that I have seen that video?It’s my diabetes, and I need to know all I can to beat these hypos, don’t I Mum?”

Our hands simultaneously slid into each others.

We really are a fantastic team. In fact, if Diabetes is behaving, then our relationship isn’t far from perfect.

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We SO Need A Pump!(previously titled HELL.)

The more I hear and learn about insulin pumps the more I realise that it would remove so much doom and angst associated with Lance’s diabetes.

Today was ridiculous.

Firstly,having a 1.8mmol/L hypo before morning tea is a very good indicator that the rest of the day/night is going to be stupendously disasterous.

Lance had a slow recovery, and so to allieviate my concerns, I took him straight to the doctor. After a general lookover from the GP, he was rendered as okay to go home. It’s almost guaranteed that when we have a hypo in the “1’s” that Lance will be struck down with a miserable headache. Got it in one. We sat in our house, with every blind and curtain closed, whilst he got some rest and let the paracaetamol sink in.

An hour later, he woke with a voracious appetite. He visited the fruit bowl, and decided on a smoothie. I blended a banana, berries, milk, ice, honey and sugar free ice-cream together to make a delicious frothy delight, complete with an oriental paper cocktail umbrella. He inhaled it like water, and then regained some of his spirit back.

Not long later, I heard the back door slam. Chino and Lance were chasing each other, Lance manically laughing and trying to jump off the trampoline onto the clothesline. Ummm..where is my son? After removing Lance and tipping the trampoline upside down, he came inside, his face glistening with sweat. I was just filling my friend Liz in on what had taken place when he came in and informed her of how thirsty he was and how he had guzzled 600ml of water. BSL reading: 23.9mmol/L.

Yikes.

Mr Novorapid made an appearance, I dialled up 2 units and he injected himself in his belly.

I noticed that his mood was easing and the mania from sugar saturation was slowly wearing off.  His running, water flushing and insulin had done the job.

Not a bad result from a disasterous morning, I thought to myself. Why do I ever let myself think these thoughts?? It is basically inviting pandemonium to strike at any moment. I’m not overly supersticious, but “expect the worst and hope for the best” is definitely a wise mantra to have on constant replay where Type 1 Diabetes is concerned. I have been caught out too many times. Just when I think that I have sewn up the day beautifully, it all comes crashing down in disaster around me.

Lance dialled up his nightly insulin dose, got me to check it and proceded to inject his insulins, making a total of 6 injections for the day. I made a vegetable medley with cheese, and gluten free noodles. He warmly thanked me and sat at his place.

I hadn’t had my first mouthful yet when I heard a blood curdling scream and a crescendo of “OW OW OW OW OW’s” amongst a mouthful of beans. What NOW? You would swear I had laced his meal with glass shavings!

“My tongue, my tongue, get the food out, ow Ow OW!”

I hurriedly scooped his half eaten mouthful from his mouth, only to discover a fleshy pink hole in his tongue that was about 2 cm deep. He had complained that he had a sore mouth earlier, but as he has a mouth ulcer at the moment, I didn’t really think too much of it.

The hypo. It was pretty out there…

His refusal to drink or eat whilst in a “1” zone is horrific to go through. I literally have to sit him in front of him and curl my legs around him to keep him still enough to get some sugar into him. In the meantime, punches are thrown and tears are shed. I recalled him clenching his mouth firmly shut this morning. And, in the process, removing a chunk from his tongue.

My reaction of horror was highly contagious. He ran to the bedroom,stared in the mirror at the offending wound and screamed blue murder. In an attempt to calm him, I bought in a cup of ice chips, which were instantly pushed out of the way. He stood, crying for 45 minutes, getting more and more hysterical, refusing to listen to reason. ( Mum’s who have been through vomiting gastro bugs will have some type of frozen glucose drink in their freezers. It’s just the done thing.) I ran for a cup of Lucozade chips, and quickly blended them into a slushie-style drink, with a sachet of Gloria Jean’s sugar to boot. My heart sank. The insulin. He had had a full dose. It would be peaking right about…

NOW.

5 soon turned into 4, and thanks to a divine intervention, he actually sat down and ate the glucose gloop.

He was still periodically welling up with tears. I racked my brain thinking of the contents of my medicine cupboard. Magic. I had a lozenge with anaesthetic in it. I promised him that he would feel no pain if he sucked it. I never make promises like this but I was absolutely desperate. I gave him a dose of Painstop-an over the counter preparation one step away from a doctors’ prescription. One thing I know is that one dose of this stuff and the pain will actually stop. Usually.

It is now past 1am, and I am warm and fresh after a long, hot shower. Screw the water restrictions-tonight I had a 29 minute shower and would have stayed longer if the hot water hadn’t ran out.

Lance fought the PainStop, cried some more, got down to 2.1mmol/L and spat a whole mouthful of lemonade in my face. If I would have had it open wide enough, it would have landed directly in my mouth. Hey, the family that sprays together stays together.

My poor little boy is moaning in his sleep because his stomach is empty, and he is probably about to vomit any old time now. I knew it was pointless giving more drink so I reached for my ever faithful glucagon kit and sunk it into his thigh. His blood sugar at this point it 7.2mmol. I know I am in for a horror night though. That number is only going to go down down down…an I will have to repeat this ridiculous and infuriating process all over again.

I’m watching Notes On A Scandal. Judi Dench is such a good villian. Cate Blanchett is such a chameleon-I would die for those cheekbones…..

I have plastic and towels covering everything. two buckets, water, more clean towels and face cloths. And the good old Panadol Suppositories for the rancid headache that will follow in the next few hours.

In the meantime, I’ll sit back and watch Judi pursue Cate. And wait.

If Lance had an insulin pump, this almost laughable series of events could have been averted. It’s tough doing it old school. I know the site changes mustn’t be much fun, but this is just absurd. I’m so tired of the same old same old. I can almost pinpoint what is going to happen next.

For now though, on with the show.

I know hell is around the corner, so why worry about it now?

Wish I had popcorn. Or a Valium.

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