Archive for Diabolic

A Time For Reflection

Devoted readers,

I apologise forthwith for the lack of updating of this page, but my life, as Kate and Lance’s, has been filled to brimming with events and occurrences. My dearest nephew has been in horrible pain, and Kate is trying to cope on little sleep and a life almost devoted to D and PN.

Please, send your wishes on to them, and pray that relief will soon be at hand.

I want to reflect back on what has been a trying time for Kate and Lance. Their tireless work throughout this year to prove to doctors that PN can exist in a young child has resulting in help from many of you, for which I thank you all. I will shortly write a more detailed post, when I am not knee-deep in Carbon Nanotubes and trying to sort out plagiarising students.

We hope for a cure to come swiftly to aid all of us, and hope for the best for Kate and Lance.

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The Repercussions of The Australian Summer versus Type 1 Diabetes.

I really don’t want to sound like Negative Nancy. After all, it’s the Christmas Holidays, we should be embracing our time together. School is over, Christmas Beetles chirp loudly at night, we can stay outside until at least 8pm-it’s such a relief to watch the sunset, and feel a cool breeze wash over us. Kids walk past our house and exclaim, “Merry Christmas, Lance’s Mum!!” It’s just a wonderful time of the year.

However, where Diabetes is concerned,  Numb November always blends into Dreaded December.

At this time of year, we suffer from blistering humidity. It becomes so overwhelming that you feel like you could almost suffocate. We have had 90% humidity in the air for about 10 days now, along with the Queensland sun burning its little heart out.  Lance’s Diabetes and summer have never been able to meet an agreement where they can give each other a break. We have had 3 out of six Christmases in the emergency ward..it’s SUCH a blessed relief when Summer turns into Autumn.

Last week, Lance woke up, visably hypo. He couldn’t sit up, and his words were slurring together as if he had been sipping vodka all night. I rushed for a handful of jellybabies, and began to speak loudly and in a sing-song-y voice to keep his attention. His eyelids were flickering, and each time I would call his name, he would jump a little, and smile at me. I managed to get him to have 4 jellybabies. He started drinking juice. I didn’t even bother with a blood test, because I knew I didn’t have time.

I lay beside Lance, and began rubbing his hair. He didn’t seem overly distressed, probably because he wasn’t really “with” me.  Then the twitches came.

The leg jerks.

The tightening of his fingers and toes.

A metre long strand of drool oozed from his mouth.

(I have dealt with Lance and seizures before..but I really wasn’t prepared for this one…)

I felt like I was trapped in quicksand. I couldn’t move my feet to grab the phone or the glucagon. I actually had to talk myself through what to do out loud.

First and foremost, I put him in the recovery position, and checked that he didn’t have a jellybaby hiding in his mouth. All clear.

A multi-coloured stain began to bleed onto the sheets from his drool. As I assembled a glucagon kit, I told him how much I loved him, and that I would always make it okay. and that would be all over soon.

I guess, as a result of the whole peripheral neuropathy diagnosis, I am very vulnerable at the moment. My face was awash with tears as  I planted a syringe full of mixed up glucagon into his thigh.

I then kissed his clammy head again, and began to sing softly to him.

I was barely able to dial Lance’s father, Scott. When he picked up, I croaked down the receiver,”I need you!  I need you now! We have a seizure situation here! Please come as quickly as you can!!”

Scott arrived approximated seven minutes later. Lance was sitting up, and falling backwards on the bed. His tenancity to fight the hypo was so difficult to watch, this one had full control of him, and there was nothing he could do to beat it.

I managed to get another glass of sweet drink into Lance-his  bsl was 3.6mmol/L!!! I shudder to think what it was prior to the seizure….

I called my doctor, and his receptionist said to bring him in immediately. As soon as Lance began to speak in sentences again, the first thing he was able to communicate to me was “Mum, I think I may vomit soon..”

I raced through the house for a bucket, and returned, to find Lance’s beautiful strawberries-and-cream complexion had turned into a whiter shade of pale, with a tinge of green.

He was very unsteady on his feet, and was determined that he would not be going to the doctor unless he was wearing  only his underwear.

“Just a singlet and satin boxer shoers, honey…that’s all.”

“No, it’s too heavy on my skin. I will have to go like this or I won’t go at all.

I looked at Scott and sighed.

“Okay sweetie, whatever makes you happy, I just need Doctor Congo to have a look at you.”

“Why? I don’t feel sick!!” An I going to the doctor??

“Um, you had a very bad hypo about half an hour ago my darling. “

“Did I? Can you carry me mum, and turn the lights all off? My head is really hurting.”

Scott rushed out to the car, and I carried my son like a newborn baby and let him lay down on the back seat. I sat with him, and strapped him in as best I could. I told Scott to take the back roads and go as slow as legally possible.

We all made it to the doctor’s.Lance  began to scream when the rays from the sun hit his face.

“MY HEAD!!! MY HEAD HURTS 111 out of 10!!!”

We were immediately ushered into a waiting room, so that inquisitive eyes couldn’t witness his post hypo stupor.

We waited for about five minutes, Lance begging me, pleading with me to go home. He just wanted to go home to bed.

I heard the doctor’s door swing open, and his loud, booming voice bidding a patient farewell. I told Lance that Dr Congo would be with us any moment. He stared straight ahead. I instantly knew what was about to happen.

I grabbed about 30 tissues.

I thought I had done very well, in catching Lance’s post-hypo vomit. That’s until a huge cylindrical explosion sprayed up my arms, in my hair, and up the walls and dripped down on the sofa.

Lance sat heaving,  half crying, his eyes rolling back in his head. A nurse came rushing in and handed him a sick bag, (the type they give you on aeroplanes.) He clutched onto it for dear life, inhaling deeply and exhaling with all his might.

The doctor called us into his room. He didn’t even blink twice, considering that his private waiting room looked like a set from “The Exorcist.”

I began to tell him what had happened. I requested a Panadol suppository for the headache, and a Maxolon injection for the vomiting/nausea. I wasn’t going to allow Lance to suffer any longer than he had to.

By this stage, he was really going to town with the cries of “MY HEAD FEELS LIKE IT’S GOING TO EXPLODE!!! GET ME OUT OF HERE!!!!!!’

The doctor swiftly jabbed him with a shot of Maxolon, and before Lance had time to complain, he had a dose of Panadol in his mouth. Doctor was sure that the Maxolon would work well enough without traumatising him even more by giving him a suppository.

His BSL upon leaving was 6.1mmol/L.  Dr Congo’s large fingers ran through Lance’s hair.

“I really don’t like seeing you like this, Lance! Do you promise you will go home and try and sleep for me? You will wake up feeling much, much better.”

Lance’s lip quivered, and he tearfully nodded.

I tearfully thanked Dr Congo profusely, and hurried Lance back into the car, wanting to get him home as soon as possible.

On the way home, a little voice from the back seat said:

“Mum..can we stop off at Woolworths and get some green grapes and watermelon?”

Without that shot of Maxolon, it would usually have been a good 12 hours before Lance actually requested food. I was happy that I suggested an IM injection, rather than try to get him to injest a tablet or syrup. The maxolon had no choice but to work if it was already in his bloodstream.

We arrived home, and I cleaned Lance up. He still had the most hideous headache. I put him into my bed, and lay down beside him. BSL:8.4mmol/L.

An hour later, I woke up, to discover the aftermath of the hypo. I tiptoed around and cleaned up, so that when he woke up, he wouldn’t be unpleasantly reminded of the goings on earlier that morning.

We have at least one of these hypos EVERY YEAR, as a result of the vicious humidity that goes hand in hand with our summers. I have to ensure that Lance has a sports drink with him at all times, as his blood sugar dances around 4-5 mmol/L no matter how many snacks I give, how hydrated I keep him, or even under-bolus on the odd occasion.I thought that this year would be different, considering that we have the pump. I have gone through all of his basal results and set them according to his recent bsl results. More hard work and constant monitoring, but watching a sugar-starved brain related seizure is something that I would be quite happy to never witness again.

I have said this before-the only joy that came out of this morning of terror is that Lance remembers VERY little. 

Without Air Conditioning, I would have to spend all day and night at the cimema with him to escape the savage Queensland heat.

Again, I was up until 1 am rubbing legs and feet last night..I got some Voltaren gel, which I know isn’t going to help the internal discomfort, but it’s more appropriate than panadol or Deep Heat.(!!!)

The whole episode  was all over the next day-after a solid sleep, Lance woke without a headache, and a voracious appetite. He had lost a day-he had no recollection of the events the day before.

Santa, if I can have ONE wish…

Please let Lance get through the summer without another severe hypo/seizure.

That’s all I want for Christmas.

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Accepting And “Welcoming” A Diabetes Related Complication.

I haven’t been dealing very well with Lance’s diagnosis of peripheral neuropathy.

I have not been able to write, nor look at my blog since Lanc’e’s birthday on the 23 November. (He loved his Lego truck btw, I was the coolest Mum in the World that day.)

 

I am really numb.

I had to write tonight, because I am getting NO support from Lance’s medical team.

Once again, I find myself alone.

Lance mentioned some symptoms to me in late October that made m ears prick up. After a consult with his GP, I had a referral in my hand  for a podiatrist, specialising in Diabetes complications.

She diagnosed Peripheral Neuropathy after the first examination she performed.

Even though I was almost positive that he may have it, I had been brainwashed over the years by specialists, diabetes educators and other people with diabetes  that PN would NEVER happen to a child.

 The podiatrist wrote to Lance’s endocrinologist, who was on leave. (again.) I received a phone call from his colleague, who wanted to discuss with me the findings of the examination.

“We just don’t see it. We don’t. Kids Lance’s age and PN just don’t go together.”

I mentioned the symptoms that Lance was experiencing.

“Oh listen, If I tested for peripheral neuropathy everytime a child mentioned leg pain, I’d be showered with gold by the Podiatry Association.”

Right.

Nevermind that EVERY NIGHT, I sit and scrub Lance’s feet with a loofah while he showers, in an attempt to stimulate circulation.

I take him for a walk down our street on the footpath, and back  up again.

I massage his feet and legs with vigour for at least 15 minutes a night.

Why do I do this?

Not because I was told that Lance has PN.

Not because I am trying some revolutionary new concept to relieve the symptoms.

I HAVE to do it, because to watch my child in so much distress and racked with foreign sensations of burning,hot, aching feet leaves me paralysed with fear for his future.

At around midnight, or on a really bad night, Lance will eventually drop off to sleep at 1am, usually with his feet anywhere but where they should be.

I massage for up to 90 minutes. The second I stop, he begins to thrash about in the bedsheets. We pace together up the hallway. We scrunch our toes up together-we play foot wars-where we sit opposite each other and place our feet together and push..it’s just all about his feet.

One night, in desperation, I called the after-hours endo.

(I can barely force myself to write this sentence.)

“Hmm, a dose of Panadol should settle those feelings down. Give that a shot.”

I made another appointment for Lance with our GP. He was devastated by the diagnosis. He also received a letter from the podiatrist. He was shocked and saddened by her findings, but assured me that we would receive his full support to help find something to relieve Lance’s noctural misery.

I was somewhat comforted by his words, but I was a woman on a mission.

“Dr Congo, I want another opinion. I am getting no support from his team, and anyone that should be able to provide words of support ends up scoffing at the very thought that I could suggest PN is responsible for Lance’s “condition.”

He said, “Oh Kate, no, you don’t need…”

“Yes, yes we do. We need another opinion so that his endo and educators will take this diagnosis seriously, and offer some support and advice treatment more appropriate  than PANADOL to treat this discomfort.”

He nodded his head,  clicked a few buttons on his computer, and scrolled down a long list of names.

“There is a podiatrist that specialises in the  treatment and diagnosis of PN. The only problem is that he’s about 90 minutes away.”

“Great. We’ll take it. Can you please write a referral for Lance?”

He knew not to talk me out of it. He turned and faced his computer and began to punch out the words with a finger from each hand.

I was able to get an appointment four days later.

This podiatrist is such a feet expert, I wouldn’t be surprised in the least if he doesn’t have a kinky foot fetish.

He conducted the prick test, and again, the same devastating results were apparent to him.

“Do you get weak or tired legs during the day, Lance?”

“Sometimes, but it’s mainly just the pins-and-needles and the heat that make me anxious.”

A tear rolled down my face as I heard my son describe this condition as making him feel “anxious.”

He is EIGHT years old. He shouldn’t even know what the word means.

I shifted to a chair beside the examination recliner where Lance sat. I  slipped my hand into Lance’s, and felt that familiar, knowing squeeze. My own son knows that he’s in trouble, yet, because of the intensity of our relationship, he can recognise when I am distressed. I looked up and his eyes twinkled as he gave me a sympathetic smile.

Not a sympathetic smile aimed at the fact that he was having tests conducted by a concerned looking specialist, nor the fact that he was having another foot examination, but a sympathetic smile for me. He knows that I haven’t been dealing well with the diagnosis.

Anyway, the podiatrist sent Lance out to the receptionist and asked her to get out his son’s XBox for him to play whilst he delivered the verdict.

“Okay, Lance does have peripheral neuropathy. There’s no doubt about that. He has significant nerve damage in his left foot, more so than his right. I will be contacting his doctors’ and requesting that he commence oral medication, and that you begin using the topical capsicum cream immediately. I also want him to begin acupuncture on a regular basis. This is going to take a huge commitment from you to teach him how to take care of his feet. Everyday from now on is imperative to maintain tight blood sugar levels, and to get those clogged up areas in his feet replenished with healthy, nourishing blood”.

I nodded, unable to speak, even though I had heard it all before.

This made it REAL. The doctor’s would have no choice but to take notice now.

Lance was in ignorant bliss with the receptionist: he was in the middle of a Star Wars game. The podiatrist spoke about how he believed a Western medicine approach with a little natural therapy intergrated would provide Lance with significant relief.

Call Number 2 to the Endocrinologist. Still on leave.

I had to re-tell the entire story to the endocrine registrar.

“Hmm, right. Okay. We’ll we can start on that medication, yes.”

“Oh, how heavy is Lance?”

“He’s about 32 kilograms.”(67 pounds.)

“Umm..how much did you say? 32?”

“That’s correct.”

“How old is Lance?”

“He has just turned eight years old.”

“Oh.”

“I think the best thing to do, is to call in to your pharmacist on the way home, and grab a tube of DeepHeat. That will provide amazing relief.”

My face turned as red as Rudolph’s nose.

“Yeah. I have used Deep Heat on an old netball injury. It did  JACK.”

I began to sob.

“JUST BECAUSE HE DOESN’T FIT THE  MOULD OF THE TYPICAL DIABETIC WITH PERIPHERAL NEUROPATHY DOESN’T MEAN HE DOESN’T HAVE IT!!” I hissed.

“I just think..that we leave it for a little while, and rule out whether it may be growing pains.”

(Ever seen Terms Of Endearment? Where Shirley McLaine goes absolutely nutso at the duty nurse because she won’t  give her dying daughter pain relief?? I transgressed into Shirley momentarily.)

“YOU! YOU LIVE OUT OF A MEDICAL TEXTBOOK! GET MY SON THE MEDICATION HE HAS BEEN TOLD TO TAKE!!! THE PODIATRIST CAN’T WRITE A SCRIPT FOR IT, SO I HAVE TO SIT AND GROVEL TO YOU FOR ONE. I HAVE LIVED EVERY SECOND OF THE PAST SIX YEARS WITH LANCE, AND I HAVE SEEN HIS BLOOD SUGARS SWING FROM 1.9mmol/L to 32.9mmol/L AND BACK AGAIN TWICE IN A DAY. NOT ONCE OR TWICE, BUT HUNDREDS AND HUNDREDS OF TIMES.  WHAT I HAVE BEEN FEARING HAS HAPPENED BEFORE MY EYES, AND I CAN’T BELIEVE THAT YOU ARE TELLING ME TO BUY DEEP HEAT?” The phone slipped through my fingers, and I kicked it so that it slammed into the wall. (I’m not proud of that behaviour. I guess having your diabetes team doubt the diagnosis of a complication plus night after night of early morning massage has the ability to send one slightly off the rails.)

Anyway, we are having regular acupuncture sessions, as well as using a topical cream which is helping more than it isn’t. We have embarked on an exercise program aimed at getting plenty of circulation to the feet, and lower leg area.

Besides having people compare Lance’s condition to feelings  they may have had that turned out to be “absolutely nothing”, I have been working hard at trying to accept that I now have to deal with IDDM, Coeliac Disease and now PN.

After much research, I know that PN can be halted, and even reversed. It’s going to take a lot of extra work, but if  I can save my son from going through any more trauma or pain in his life, then I’d turn myself inside out to do it.

I was always aware of peripheral neuropathy. I guess I feared it because I knew just how much Lance had hideous blood sugar control as a baby and a toddler. It wasn’t until we switched from Protophane to Levemir two years ago that I realised  just how terrible his  control had been.

So, I guess I am asking you to do the same.

 If you are a parent of a child with diabetes, and they have been diagnosed for at least five years, HAVE their feet checked by a doppler test (like an ultrasound.) Never underestimate Diabetes. Never put all your hopes in what the doctor’s tell you. Follow your gut feeling;  and, if you ARE worried, don’t take “Don’t Worry” for an answer. This isn’t meant to induce fear or more concern, but if I had listened to the “experts”, I would still be believing that Lance had a stupendously elongated case of growing pains. When your life is shared with type 1 Diabetes, a good mantra to live by is, “Be alert and stay aware.” (I was going to write “and stay on your toes”, but it didn’t seem appropriate for this post.)

 You are responsible for your child, and if you request an investigation, you are doing what a good parent does-and follows through with something that could inevitably affect your child for the rest of their lives.

I have contacted JDRF Australia, to do a story about Lance’s diagnosis. I don’t want to scare people, but I think it’s high time that diabetes specialists stop with the “cure in 10 years” and “chance of complications are very rare at his age” chitchat and provide some preventative techniques and up-to-date education for parents.

No one likes hearing the truth about what  effects Diabetes can have on the rest of the body. Strangely enough, when I sat Lance down after his birthday, and explained why he had hot and burning feet amd pins and needles regularly, he replied, “Hmm. I knew it had something to do with Diabetes. I guess I’m really lucky I have my pump then.”

Diabetes cannot and should not be sugarcoated any longer.

 

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Numb November

After abandoning my blog for 19 days, I felt I had to address the emotional upheaval and grief that has tormented me this November.

Firstly, I must thank my brother, Janek, for taking hold of the reigns and stepping into the shoes of a writer who focuses on issues concerning type 1 diabetes. He is a truly wonderful person-if you would like to learn more about Janek and his adventures, his blog, The Engineer Also Muses is always an excellent read.

This has been our November.

1November 2008: Lance has shared his life with type 1 diabetes for six years. The first two “anniversaries” I was a sobbing mess. The following two, I made sure that we paid homage to the gift of insulin by having a small celebration. This year, the words, “When he’s been diagnosed for over five years, you’ll need to keep your eye out for complications” resonated through me each time I inhaled, and exhaled. We made a very bland vanilla cake. Balloons and celebrating the worst day of my life weren’t appropriate this year.

1-19 November, 2008: Lance’s symptoms of hot, burning feet at night have not improved or slowed down. Our GP wrote a referral to a Podiatrist specialising in Diabetes Complications. I was able to get Lance and appointment very quickly. We are in a ridiculous sleep pattern at the moment, with Lance unable to sleep until close to midnight, and struggling to wake up by 8.30am the next morning in time for breakfast and school. Not to mention my glassy eyes with unflattering bags big enough to accommodate an around-the-world trip. I have found myself falling asleep at my desk and even while waiting for the oven bell to sound. I don’t know how horses can bare to sleep standing..

We had an early appointment on a Monday morning. Despite my fatigue, I actually took half a valium tablet before we left, because despite EVERYONE telling me that there was no possible way that Lance could have Peripheral Neuropathy, my gut told me otherwise.

Gut was right.

Helen, the podiatrist, was actually two years my junior in primary school. Once we established that we knew each other as children, I told her about the past six years living with Diabetes, and the incredible year I got to spend with Lance before his diagnosis.

She began her examination. (As far as Lance knows, all kids have to have their feet checked to make sure they are growing properly. I don’t want to mention complications or anything negative until the most important day of the year is over.)

 November 23-Lance’s 8th birthday.

He climbed up on a modern black leather chair that was operated by remote control. He seemed suitably impressed. Helen asked him if he would mind wearing a blindfold, while she conducted the “prick test.” Lance, ever the perfect patient, nodded enthusiastically and held out his hand for the eye cover.

Helen examined Lance’s feet, and asked him to point to where the heat mainly came from.

“Do you get pins and needles often, Lance?”

“YEAH! Everyday.”

“When you’re playing on the floor or sitting with your legs crossed?”

“Sometimes when I’m on the floor playing Lego, other times when I’m at my desk doing homework. It just depends, really.”

“Okay then Lance. I want you to say “YES” or raise your hand when you feel a little sting. I’m just going to use something that looks like a nail file to see how sensitive your feet are.”

“Okay then.” He sat back in the chair, totally relaxed. I was on the end of mine, almost hyperventilating.

Helen began prodding the sharp corner of a file into the soles of his feet. She moved to the top of his foot, testing each toe, moving up to the ankle, and then slowly progressing up his calf. When she got to behind his knee, he was startled and let out a loud, “YOW!!!”

No feeling in his feet….

No feeling in his legs…

Helen couldn’t quite look me in the eye. She picked up a stainless steel tool that resembled a spiked vibrator. She went over all of the same spots that she did with the file. This time, he could feel the deep vibrations, and he had his hand up  the for almost the entire part of this examination.

Helen pressed a few buttons on the chair, so that Lance was sitting upright. She removed his blindfold.

She sat down on her chair, and clasped her hands together.

“What we’re looking at is Peripheral Neuropathy. I used a file on his feet and legs that I would use on an adult, so I was expecting him to be hollering. The good news is that he has feeling deep in his feet, as he responded very well to the vibration test. I’m going to conduct a doppler test, which basically means that I will be listening to blood flow in his feet to make sure it’s nice and strong.”

Peripheral Neuropathy. I was still in deep shock at watching my son completely unresponsive to having a sharp file dug into his flesh.

She smeared some blueish gel onto his ankles, and then endeavoured to find the pulse in his feet. A slight frown appeared on her forehead. My stomach was churning over and over, I had a pulse pounding away in my temples. Finally, she found a faint pulse close to his ankle.

“That’s a lot deeper than I would like it to be. It’s quite faint, and..well, we’ll do the other foot.”

What I had been secretly fearing was unfurling right before my eyes.

The pulse in the other foot was much easier to find, and it was strong, and the bloodflow was normal.

I asked what we could do about the symptoms. She said that she would write to Lance’s endo and ask whether he would prefer Lance to commence oral medication or to use topical preparations.

“I don’t want to scare you, but there has been damage done. The good news is that Lance spoke up early, and you pushed for a podiatry assessment, and now that we know that he has PN, we can work at halting any further damage, and he’s at such an advantage being on an insulin pump.”

“I need you to be totally honest with me, Helen, I want to know everything, so I can learn about the best way to help him.”

“I haven’t had a lot of experience in paediatric podiatry, with diabetic complications, I mean. I have some phone calls to make to your team, and some letters to write just confirming my findings.”

I gave her the phone numbers and addresses that she would need to pass the news onto Lance’s Diabetes Educator and endocrinologist. She clasped my hand.

“I am so sorry, Kate. It’s not the worst news, but it’s certainly not what you want to be dealing with at this age.”

Precisely.

We are now, more than ever, working hard to stay in the 4-8mmol/L range.

I have become even more of a Shoes-Outside-Always-Nazi, so much so that I loathe the sound of my own voice. I am constantly sweeping up small, sharp pieces of Lego. I loofah Lance’s feet in the shower every night to improve circulation. I massage with such force that my own hands feel bruised the next day. If I massage his feet the way I used to, he can’t feel it anymore.

Lance is taking a Vitamin B1 Supplement (Thiamin) which is supposed to allieviate the unpleasant sensations that accompany PN. I have to wait for his endocrinologist to return for holidays before I get his verdict about treatment.

I will write more about the reactions I have received about the diagnosis in my next post. I really just wanted to let people who have been kind enough to enquire about Lance know that despite my initial devastation, I’m trying to think of it as just an area of his diabetes care that I’m tightening up on.

The Staff at Lance’s school all wore blue on World Diabetes Day at his request. He wrote an email to his teacher, letting him know that it wasn’t a day for donations, but a day to create awareness.

My good friend, Amy Leverington, was chosen to climb Mount Kosciuszko (Australia’s highest mountain) on the morning on World Diabetes Day to watch the sun rise. Amy has achieved so much already, through putting together her funky anime blood sugar diaries, that have no smacks of Diabetes or bsl readings about them whatsoever. She is currently working on a unisex pump diary-stay tuned!

Our next big appointment is at the end of November-we have to pay a visit to an opthamologist.

My brother, Janek celebrated his 23rd birthday on the 16 November. I’ve already wished him a happy birthday, but I’ll do it again in writing..HAPPY BIRTHDAY, JANEK!! You can pop by The Engineer Also Muses and pay your regards if you care to do so!

One year ago, my dear friend Joel, who lived a life riddled with chronic pain and depression, passed away in his sleep at the age of 32. The pain of his absence is so strong, yet I experience a great sense of relief knowing that he never has to endure a painful, difficult day again.

Joel was buried on my the day that my own angel came into the world eight years earlier. 

Lance, my only child and best friend celebrates his 8th birthday on Sunday.

We’ll be sure to make the readers who have grown to admire Lance’s bravery and wisdom part of his special day, by having the birthday boy in person post about his special day.

November will always be rollercoaster of emotions. With my son’s birth, my life became fulfilled and watching him live was simply an extraordinary experience.

With my son’s diagnosis, he was robbed of his innocence and freedom. Again, my world had a huge shift, and it still leaves me rattled on the odd occasion.

And again, the new diagnosis of Peripheral Neuropathy in November. We arrested the condition early, but it has left me so exposed and aware as to the impact type 1 diabetes can have on the body. It’s a very hard concept to address, especially when you have others around you suggesting that it couldn’t possibly be Neuropathy. I would do anything to say “It’s all been a huge mistake! I was wrong!”  However, as a mother to Lance, and to his diabetes, I just knew. We went through enough wild fluctuations when he was three/four to know that his entire body had worked very hard to keep functioning for that very difficult stage.

Also, I am waiting for the return of my laptop. It is in Sydney, currently being repaired. I was lucky enough to borrow one overnight so that I could catch up on November.

I have all of my attention focused on The Birthday. I did good with getting what he wanted. I need to see the rapture in his smile to help me begin to heal.

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When life isn’t written from a textbook

Another guest post by Janek

It feels weird, almost numb, to be writing this post, but my dear sister got in contact with me this morning and asked me to put something together.

When someone is diagnosed with any lifelong condition… you don’t think it can get any worse.
When someone is diagnosed with diabetes… you don’t think it can get any worse.
When a child is diagnosed with diabetes… you don’t think it can get any worse.

It just got worse.

It was almost ironic that I wrote yesterday and referred to severe foot ulceration as part of peripheral neuropathy. Lance-a-lot, today, officially received his diagnosis.

A quick revision… What is Peripheral Neuropathy?

I’m by no means an expert (though my trivial knowledge makes me a must for your next games night), so I browsed through the Wikipedia page (Peripheral neuropathy, Diabetic neuropathy). I have provided a summary below:
In general, the peripheral neuropathy is the damage of nerves in the peripheral nervous system:

In diabetics, distal axonopathies are caused by the neurons being affected by the metabolic process causing sugar fluctuations. Symptoms include loss of function causing numbness, weakness, heaviness, and gait imbalance and abnormalities; gain of functions such as pain, pins and needles, itching, cramps, and tremors; myalgia; and, in severe cases, the sensations such as burning which cannot be linked to any known problems. The loss of sensation can be severe, and a simple ‘prick’ test is often conducted.

The issue here that I want to make clear is that at no point is there any statement such as “this only affects…”

This means that Peripheral Neuropathies can affect any diabetic of any type at any time. Life is not written for “textbook cases”. There is no “you don’t have the right settings”.

What does this all mean?

Poor Lance-a-lot is now going to have to be careful. He has no sensation in his lower leg. Imagine not feeling your legs as you walked over broken glass? If he’s not careful, and I hate to drag it up again, but I think this point needs to be made, he could find himself facing this:

Ulcerated Toe

Ulcerated Toe

Finally…

One final point I want to make is that life, diabetes, and neuropathies are not a competition. I know that each condition is different. I know that some people have it far worse than others. I feel so terrible for each and every one of you. With World Diabetes Day this coming Friday, make a donation, and continue to try to make life better for everyone.

We’re all in this together.

Otherwise, we turn into The Four Yorkshiremen (and it’s over to Monty Python for the close…)

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Beep! Beep! Beep!

I have been quite pleased with my ability to handle the technical side of Lance’s pump.

This evening, Lance’s blood sugar levels were on the right side of perfect, and it was such a wonderful feeling that he had showered, reattached the pump, and all seemed well in our nest.

“BEEP BEEP BEEP”

“BEEP BEEP BEEP”

“DISCONNECT PUMP FROM BODY”

“CHECK BLOOD GLUCOSE”

“REDO SITE CHANGE”

“BEEP BEEP BEEP BEEP”

BEEP BEEP BEEP BEEP!!!!!”

Lance and I looked at each other in sheer horror. We unclipped the pump from his pyjama pants.

“Does this mean my kidneys are failing, Mum?” he asked.

I rushed to him and looked him square in the eye.

“No, not at all. Forget that thought completely. The pump isn’t happy with something that I’ve done. I will fix it though, I promise. I smiled broadly to prove to him that I was confident, when really, I was experiencing sheer panic and I felt very fearful about what was about to happen.

Firstly, a BSL check. 17.6mmol/L.

It gets better…AND a trace of ketones.

Whaaaaaaaaaaaa, it is 3 degrees outside and 11pm-way past Lance’s bedtime, but usually the time when Diabetes related disasters occur. I’ve let my guard down in the past week. I should know that nothing is ever safe or foolproof with Diabetes. Pump or no pump, there’s still a reasonable chance of a crisis, ranging from mini to super (with wings).

I grabbed my quickserter, a new set, a new reservoir, half a dozen alcohol wipes, the glucometer and a sharps kit. We marched into the spare room, armed with everything to fix this problem, and flicked the heater’s “on” button.

Lance nestled into his mini armchair.  I attempted to give off the vibe that I had everything together. My brain was like jelly, I had no idea where to start, or how to shut the infernal beeping off. I could feel my heart gently start to pound. I had no time to waste. I grabbed the phone, and called the Medtronic 24 hour helpline.

(Bless you, Medtronic.)

Despite my fears, I was quite intrigued about the whole “American” experience. I pressed “2” for faults a couple of times, and was told that I would be addressed as soon as a customer service professional was available.

BEEP BEEP BEEP BEEP.

I smiled at Lance, and made a dumb face directed at the pump. He smirked, but I could tell he was worried.

Was that a voice?

Yes!

“Hello?”

“Welcome to Medtronic, how can I help you this morning?”

(It was a male customer service provider, with a twangy, slightly sulky voice. Maybe he had an adnoidal problem..Anyway, I got an immediate image of Jon Lovitz stuck in my head, and it wouldn’t beep off!)

Jon Lovitz working for Medtronic Helpline? I am sleep deprived. Was that a sheep?

Jon Lovitz working for Medtronic Helpline? I am sleep deprived. Was that a sheep?

 

I told “Jon” all about my woes, in fact, I spoke for almost two minutes, without any response.

A few more seconds lapsed… “I can help you with this, Keete.” he replied. I could hear the faint thumbing through pages-no doubt troubleshooting solutions for people like me.

I was so relieved that he wasn’t confused or totally weirded out by what I had just told him.

Then, I had to spell EVERY word to him. My name, my address, the serial number, the quickset’s serial number…

“Keete, where is Queensland?”

“It’s in Australia.” I replied, without tweaking my voice to the sarcasm tone.

“Is it a country in Australia?” he asked. I was biting my lip, trying not to make him feel as though I was ridiculing him.

“No, it’s a state. Queensland is a state.” I stated.

“Ah, it’s a state. Okay, got it. Do you have a zip code?”

“Yeah, we do. Every town has one. We call them post codes though.”

“Postcodes?”

“Yeah.”

“That’s interesting. I’ll have to remember that.” (He was totally serious, or a VERY good actor.)

“Okay, I want you to tell me what the screen says on your son’s pump, Keete.”

I obliged. We went through a few more Q and A’s. We then got to the part where he wanted me to prime the insulin.

“You just need to let me know as soon as you see insulin, Keete, okay? Even if it’s only a drop, that’s fine, just fine.”

“Yep. I have that part covered.” I replied.

“I’m sorry? What are you covering? You should not be covering anything at this point, you should be holding the tube in your hand, and pressing ACT with the other.” He sounded very panicked.

“Ahh apologies..’I have it covered’ is a general expression which means, ‘I know how to take care of that,’ do you know what I’m saying?” I had my head in my hand at this point.

“So, nothing is covered, it was a joke, right?” he asked hesitantly.

“That’s right. I just meant that I knew about how to prime the machine and look for insulin to appear from the tubing. No actual ‘covering’ of anything to do with the pump. I’m listening to your instructions very carefully.” I hoped he understood…

“Riiigght. I see. So now that you see insulin, would you like to try inserting the reservoir into the pump?

“Sure. No problem. Done.” I replied.

“Okay, what does your screen..”

BEEP BEEP BEEP BEEP BEEP BEEP BEEP BEEP BEEP BEEP BEEP BEEP BEEP.

He had hung up on me!!!!!!

Mid-sentence, our coversation was abruptly terminated.

A-ha! He has my phone number! He requested it at the beginning of the coversation!

I patiently waited…imagining him finding the screen on his computer with my contact details.

ALAS.

I was in shock. He was gone..

Jon Lovitz was somewhere in an office in America, answering the next caller.

Nevertheless, he had brightened my spirits, and I swiftly got to finish changing the site.

(I had to laugh when Lance asked if I was speaking to someone in another language.)

Three hours later, so far, so good. Beeping has completely stopped.

On second thoughts…

I think it’s going to be a long morning, actually. I just did a BSL test, and Lance was a devastating 4mmol/L. I have just pressed “SUSPEND”-hoping that the Novorapid will wear off soon and I can enter a lower basal rate. Looking on the bright side, at least I know I did a good, tight job with his site…

My first pump disaster turned out to be michieviously hilarious, but I STILL can’t get the image of Jon Lovitz out of my head!!!!!!!!!!!!

(Nothing against Jon, personally, but why couldn’t the Medtronic guy sound like Jake Gyllenhaal??)

2.45am. Long night approaching.

 

 

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The Silent, Fatal Complication Of Type 1 Diabetes.

I recently posted an interview about an amazing and inspirational man with Type 1 Diabetes, who had won his battle against severe, life threatening bulimia.

Diabulimia is only a relatively new term, but it is very real and many type 1 diabetics of all ages, but particularly young teens and adolescents are falling victim to it.

Tragically, there are people all over the world taking unbelievably dangerous chances with their health and, potentially, their lives.

Puberty is a serious condition all on its own, and diabetes just makes it worse.

All it takes is for a young person with Diabetes to have high blood sugars for a few days, and they will quickly become aware that they can shed kilograms without any effort at all.

It then becomes very tempting to continue remaining high; all that is required is to become committed to “skipping” their insulin regime. The constant threat of DKA, liver enlargement, premature kidney damage, premature eye problems are all common complications-the symptoms of what can be considered long term complications appear much earlier, and are much more sinister. Adolescents with diabetes aren’t immune to how society perceives and admires Hollywood-ites, or to compete with their peers into what they consider is the epitome of cool/beautiful/or what men want them to look like. Extra kilograms become just as disgusting as diabetes itself. Thus, this condition, that is not yet recognised as a medical condition is silently rampant in younger diabetic communities.

I received a very brave, and courageous email from a reader named Jacq, who has spent the past weeks devoting herself to creating a website. The subject matter is very close to her heart.

Jacq, the creator of Sugar Rush has taken on a huge task by creating a support network for those who may be short-term or long-term suffers of Diabulimia. She is so determined to make a difference, that she is going to study Psychology at Uni this October, in an attempt to help other young people like her, and to give this silent diabetic complication an identity.

In the past, most people with Diabulimia were treated as suffering from bulimia,( who just also happened to suffer from Type 1 Diabetes.) Eventually, it became recognised that having Type 1 Diabetes and Bulimia was becoming more than a coincidence-it was a legitimate problem concerning teens or young people with type 1 Diabetes. Psychologists are hesitant to give Diabulimia a title, and prefer to address the key problem as simply bulimia.

However, the symptoms of Bulimia Nervosa are binge eating huge amounts of food, followed by purging (vomiting ) or using a laxative to rid the body of as much of what was consumed as possible, repeatedly, each and everyday. The binge/purge pattern is not neccessarily typical behaviour of Diabulimia. The main objective is to stay as high as is “safely” possible; high enough to function, and to hold off from having to use insulin for as long as possible , without accidently lasping into a Diabetic Coma, and facing the “worst” case scenario-their secret being revealed to their parents, peers or waking up attached to a drip. Witholding insulin will see the body begin to cannibalize itself, eating away muscle, fat stores, therefore leaving sufferers elated at the weight loss they have experienced with very little effort.

"The only consistency in a bulimic's life is Bulimia...imagine the chaos of Type 1 Diabetes thrown in for good measure?

"The only consistency in a bulimic's life is Bulimia...imagine the chaos of Type 1 Diabetes thrown in for good measure?

The constant threat of DKA hovers over a diabulmic’s head, but the lure of keeping the kilograms off is much more tempting.

I would love you to visit Jacq’s site, she is eager to have as many people contribute as possible. Working on this project has been highly beneficial for her recovery!

She is providing a fantastic community service for those who live in this silent world. People with Diabulmia now have the opportunity to have a voice, and know that they most certainly are not alone.

http://www.sugarrushme.synthasite.com/index.php

I would recommend this site to anyone who has an adolescent teenage daughter OR son with Type 1 Diabetes. Hormones and increased insulin injections play havoc on the adolescent body. The desire to become as perfect as they can be, in an attempt to impress society or to increase self-esteem issues has escalated out of control, for both sexes. In fact, some doctors are comparing the diagnosis ratio between females and males as 2:1.

It would mean so much if you could take the time to read Jacq’s story, and add her URL address to your blogrolls.

It could mean that a lost and lonely soul who is living a a life of deceit and secrecy, and finds they have little or no choice but to exist in a world of silence and shame may stumble upon Jacq’s site, and at last, feel like they can relax and know they have a safe place to visit. Maintaining bulimia and uncontrolled Type 1 Diabetes would equate to a 24 hour job, and just maybe, Jacq’s page may allow sufferers to feel like it isn’t necessary to participate in self-loathing and such damaging acts to their bodies quite so much. Feeling like the shackles were loosened and the lights turned on would be the most emancipating feeling for this tiring, extreme and horrific condition.

We focus so much on retinopathy, HBAIC results, hypers, hypos, kidney problems, all totally worthwhile topics to have a good vent about, but imagine if mentally, you had NO control over this dangerous and life-threatening condition.

I have to congratulate Jacq for having the courage and the strength to speak so candidly about her condition. It is difficult to read, and those who do not understand mental illness may have a difficult time accepting that this is actually a real and fatal condition.

Jacq is officially a SuperFriend of Why Did The Insulin Die? for standing up and making a difference-we wish her the very best on her journey to full recovery.

Bravo, Jacq.

If you feel like you identify with any symptoms of Diabulimia, you can anonymously contact a support group called lifegoeson.org.au which offers strategies and choices to get through any serious illness.

1300 364 673 (Australia only.)

There is also a fantastic page: http://www.eatingdisorders.org.au/content/view/16/37/ that offers many links to different groups in various states in Australia. Interestingly, Diabetes Australia is listed.

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