Archive for Diafrustration

May-day, May-day

Devoted reader,

I apologise profusely for my slackness in keeping the world updated with the progress of life with dearest Kate and Lance-a-lot, but I am troubled.

I’ve had significant issues in getting in contact, with only one short phonecall to Lance last month, and quickly catching Kate before she shot out the door yesterday. All I can tell you is that they are alive. Admittedly, though, Lance sounded in good spirits when I spoke with him ūüôā

Meanwhile, there’s not a great deal I can tell you at this point from a diabetes perspective, but, there is another event close to my heart coming up soon:

Next week, May 11-17, is ME/CFS Awareness Week, and Dan and I plan to go along to the event organised in NSW, the Creative For A Second art tour.

As always, donations to both the ME/Chronic Fatigue Syndrome Society and JDRF are greatly appreciated by all people involved.

I hope to be able to update you with more soon!

Janek

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A rant on modern medicine

I’m sorry I’ve been a little slack in keeping everyone up to date here on Kate and Lance’s blog, but I’ve been a little caught up in a few other things and have just found some time to sit down.

Things have not been going well for my sister-in-law in the north. She and Lance have been racing around trying to find an answer… any answer for Lance’s pain, which no doctor seems willing to believe is Peripheral Neuropathy. It’s at times like this we wish that modern medicine would stop thinking that every person fits into the categories written about in their textbooks.

Life is not identical for each of us. We are not exposed to exactly the same conditions as any other person every day, and even then our bodies respond to things differently. Allergies and intolerances are a prime example of this, and the varying degrees people may be afflicted with such debilitating illnesses as Diabetes, Chronic Fatigue Syndrome, and Fibromyalgia, as well as even things such as stress, anxiety, and depression, means that no doctor can just look in a book, point to a word and say “You have this!”.

It is imperative that Western Medicine remembers to think laterally and logically, combine all factors, and think about the exact conditions that the person is presenting with. If a child is crying every night and requiring 24 hour care to try to ease his pain; if a child can’t feel a pin being forced into his foot; if a child has continual burning sensations in his legs, then that child is probably not making it up and attention seeking.

As you can tell, I am seething from the news Kate has been telling me. It is disgraceful and disgusting some of the medical advice she has been given, including “just ignore it”, “it’s growing pains”, and “it can’t be neuropathy, he’s too young”.

It is good advice for all persons to remember, don’t just take your doctor’s word each time. Ask for a second opinion if you don’t believe what they’ve said is the case. Go to another doctor in your town, or, if you have to, travel. Find out who is the best person for your symptoms who might be able to help, and demand to see them. Do not just accept defeat and that you’ll just have to put up with anything.

Be bold, be strong, and be well.

Janek xx

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The Nerve Man.

Wake up to cat marching on my back.

Gently give Lance a shake and a kiss.

Breakfast.

Put referral and medications in bag.

Give ibuprofen to Lance.

Get dressed, take a deep breath.

Lance dressed.

Curls up like a centipede on the rug.

Drive to hospital.

Go inside, ask for directions.

Walk up a long corridor that feels like it will never come to an end.

Walked past the Oncology Ward.

I keep my head purposely facing forward.

Lance slows down. He can’t make it to the end of a corridor.

I pick him up, and put him on my hip, the hip where he has spent so much of his life in silent pain or audible agony.

Turn right into room.

Young male receptionist. (Even in distress, I was still aware of his good looks.)

“Lance?”

“Yes. Sorry we are a¬†little late. Long corridor.”

Doctor emerges.

Thin lips break into slight smile.

Takes referral.

Squinted eyes scan over it.

Forehead ruffles.

We are told to get Lance comfortable on one of  so many examination tables.

Lance lies down, shoes off, hospital-starched- pillow snaps as his head lowers into it.

Holds my hand.

“Okay Fella, Im just going to look at some of the nerves in your legs.”

Lance nods.

Turns on a machine, straps a black band around Lance’s shin.

Lance winces as the first shock is administered.

Doc uses tape measure, makes a small marking on Lance’s leg with blue pen.

Ferociously writes down measurements.

Next shock.

Nothing.

Knob gets turned clockwise.

Lance grimaces.

“Felt that, hey Fella?”

“Yep. It felt like an electric shock.”

“Well that’s what it is really! You got it in one!”

More measurements, more scrawling numbers.

One last one.

Lance takes big breath.

Lance’s leg jolts.

“Forgot to turn the power down, there! Sorry Fella.”

Repeats. Lance stares at the ceiling.

“You okay Fella? You’ve been really good, reaallly good.”

“I’m used to obeying doctors.”

“Mum, I’m not commenting on anything until I do some precise calculations, but from what I can see here, there is a slight…..”

Tsk tsk tsks like one would take to a rabbit or a guinea pig.

“There’s something askew.”

Askew.

“I’ll get all of this written up and send it to Dr Congo. I should have results to him by Tuesday?”

“What do you think about the medications Lance is taking?

“I’m the Nerve Man. I wouldn’t know, Mum.”

Mum smacks her lips together silently in annoyance.

“Okay Fella, up ya get! Need a hand? Alrighty then.”

Lance puts on shoes.

We are ushered to young male receptionist.

The Nerve Man mumbles a series of letters and a number.

YMR nods and begins writing a receipt.

The Nerve Man shakes my hand.

“Mum, he’s only eight. Dr Congo¬†is¬†just watching his back, I think.”

“I asked for the appointment , actually.”

“Right….” he says, his voice trails off, as if he was going to say something else, but doesn’t.

YMR smiles very sweetly at me.

“That will be $450 thank you.”

I swallow in shock.

I try to keep my facial muscles as still as a botoxed starlet.

I hand over plastic money.

Small talk.

Bla bla.

Docket prints out.

My “autograph” is requested.

Receipt and docket stapled together.

Walk out of the office.

Reeks of Cauliflower puree.

We approach the corridor.

“Can we go home, now Mum? I just want to go¬†home.”

“Yeah, me too babe. “

Get home.

Lance takes his position on the sofa.

Sighs with contentment as his shoes are removed.

I stare out the window.

Numb.

$450=Askew.

What a nerve.

 

 

 

 

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Lance And The Big Blue Tablet.

Things ain’t looking good for Lance.

He has been going to bed everynight at 2am,¬† because he is in SUCH agony and discomfort with his feet and legs.Massage, warmth, paracaetamol, ibufrofen…I may as well be giving him M&M’s and rolling clingwrap around his legs.

I am so sleep deprived- if a sentence doesn’t make sense, please forgive me.

I took Lance to the doctor today. The doctor saw him and sitting on the chair, and said, ‘Your legs still hurting, Lance? The way you are sitting..they look, they¬†look very heavy.”

We both nodded with bleary eyes. Lance isn’t coping with the sleep deprivation either.

I got a letter from the podiatrist today spelling out the hard, cold , agonising truth.

Catergory 1 (at risk) – “Neuropathy, no deformity-Patient is 1.7 times more likely to develop¬† an ulcer than person of equivalent age with no diabetes. 6 monthly podiatry reviews required…..”

Sensory Test-“Monofilaments showed neuropathy was present with loss of monofilament sensation up to the knees….”

“My differencial diagnosis consists of¬† SYMMETRICAL POLYNEUROPATHY….”

“Some suggestions would be Capasaicin, Oral Thioctic Acid, Tricyclic antidepressants, anticonvulsants, transcutaneous electrical nerve stimulation (TENS), Acupuncture…..”

Given Lance’s age, I feel that due to the potential side effects the antidepressants and the anticonvulsants be kept at a last resort.”

 Dr Congo took one look at Lance, and picked up his telephone. He dialled a neurologist whose books are full for an entire  four months. By the end of the consult with Dr Congo, we had an appointment for Saturday!!!

However, the not-that-great news, is that Lance has to start a course of Endep. As much as I battled to try and avoid any oral medications, I realised that we were both floundering about in quicksand. I need sleep to keep him well and pain free, and  take care of his diabetes. He needs sleep, because, at eight years old, five hours sleep is no where NEAR enough.

Endep is an ancient tricyclic antidepressant, which is also effectively used for the relief of chronic pain. He had his first tablet, a shower, and his dinner. I asked him a question, and 40 minnutes later, I could see his tonsils vibrating. Finally, his little body lay still, his legs relaxed, his feet…his beautiful feet looked so clean and just like the did when he was a baby.

Amitriptyline-10mg. Otherwise known as Endep. 

Amatriptyline..otherwise known as Endep.

I made the obligatory calls to his team and I spoke to our regular endocrinologist’s partner. He listened in disbelief as I told him about the mornings events.

“Kate,¬†you must¬†rip the script up, I¬† think you should consider getting a new GP for¬†Lance.”

¬†Somewhat puzzled, I asked “why???”, and he said,¬†“Well, he’s prescibed a¬†low¬†dose narcotic here to an eight year old, do you really want your son with a prescription drug dependency??”

(Turns out Doofus the Enodocrinologist was thinking of Endone, not Endep.¬†(Endone is taken for severe pain, and is often referred to as “Hillbilly Heroin”, as you can get it for bupkus on a script, and apparently have a whale of a time if that’s what does it for you-it basically mimics heroin, but in the pharmaceutical tablet variety.)

I held that Endep script in my hand for so long, wondering if I should hold out until I saw the neurologist on Saturday. I took alook at Lance, who¬†could have been a poster boy for “Antz in your Pantz”, and decided then and therefore it was up to me to provide him some relief, despite what the critics thought.With a heavy heart, and a few¬†streams of ¬†tears, I took the packet from the the pharmacist. If this really is Peripheral Neuropathy without medication or treatment, I will never complain about Diabetes again. (I know, what a crock.)

Can I ask you all to keep him in your thoughts this week? He has been suffering in silence for ages now, simply because he thought it was “normal” to feel like this.

After his Nerve Conductive Test on Saturday, we will have a LOT more answers, and possibly a positive direction which way to go…

Again, I IMPLORE of you, just because you have a young child, or a teenager, or a twenty-something, does not MEAN a thing if you ain’t got that swing. Any symptoms such as painful legs, heavy limbs, pins and needles to the excress, no feeling in the extremities, unusually hot or cold feet, GET IT CHECKED OUT. Demand a test for PN, even if you get scoffed at by your family GP. A Podiatrist has all of the equipment to conduct the tests,and provide answers.

Having diabetes isn’t JUST all about AIC’ testing, eye checks, the annual urine sample…there are so many parts of the body that it affects. After being diagnosed for 5 years, go ahead and make the steps to organise the appointments yourself, EVEN¬†if your GP tells you they are”‘not necessary.”

I just checked on my Lance. For the first time in months, he is sleeping peacefully, His legs are still. His face is relaxed, and not grimacing in agony.

Despite my hesitation regarding him starting the medication, I now know I did the right thing.

I’m going to follow him to bed, for the first time in years.

Goodnight!! (And it’s been a long time since I have said that, too!)

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New Beginnings (Again.)

I used to devote so much time and energy into providing interesting news and updates for my blog.

I wanted it to be a place where people could come and feel like they had taken away some helpful and positive information.

However, since Lance’s diagnosis of Peripheral Neuropathy, I ackowledge that even though I knew that¬†his symptoms spelt trouble, hearing the diagnosis..twice..sent me back to the days when I was a newbie parent of a child with type 1 diabetes. I could function, cook and clean, do homework, wash the clothes, ensure that Lance’s blood sugar levels were in check, but I was¬† a pretty tragic person when after Lance went to sleep. Oh, yes I was.

I have had to FIGHT like a demon to get Lance’s specialists to ackowledge that this condition is real and present in my eight year old son. I have spoken to countless people about how there are similar conditions that mimic Peripheral Neuropathy. I know this, but I have ALSO taken him to two podiatrists, specialising in peripheral neuropathy, and the other, Diabetic¬†conditions ralated to the feet. Basically, they¬†both¬†concurred with the diagnosis.¬†They also expressed their disdain towards Lance’s Medical team for being so lax towards a child with a diabetic condition that needs specific attention so as not to deteriorate further!!

Our Diabetes Educators are on my hit list at the moment. The ones that I have dealt with look at me with such gross suspicion, as if I have created the symptoms to get more attention for Lance…(Did I just write that??) Other’s have said, “Get him involved in sport-that’ll get his pain levels down, that’s if he DOES have it, of course.(!) And the Kingpin…”Why do you know about Peripheral Neuropathy anyway? There is no point in stressing yourself out about a condition that a parent doesn’t need to know about.”

¬†(OR…IN THIS CASE I DID!!!!!)

¬†It never ceases to amaze me…you don’t know enough about type 1 diabetes and you get a grilling for not keeping yourself educated, yet you bother to investigate what COULD happen in the future, and you are considered a wack job.

So, it’s the beginning of 2009. No more feeling sorry for myself or Lance. I fight everyday to keep tight blood sugars, his little fingers are calloused and black from all of the finger pricks I make him endure. He follows a tight exercise program that endeavours to keep circulation flowing well, and he is also taking a B1 supplement. His paediatric endocrinologist wants him to commence taking Endep, an ancient tricylic antidepressant that is used to block nerve ending pain. Seems great in theory, but it has a nasty side effect. Even on low doses, fellow patients have told me that they were barely able¬† to move, they felt so “dopey” or “cloudy”¬†and planted to their bed or chair. When I think of my eight year old medicated, or running around the block and following a lot GI diet, of course I am going to keep him of meds. However, if things digress, and it is necessary for Lance to be on medication for increased¬†pain and uncomfortable sensations, well of course I am not going to deprive him from pain relief.

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A lot of the wonderful treatments available in the United States simply aren’t heard of here.

It comes  down to a capsicum topical gel, Endep, exercise programs, tight control of blood sugar levels, or the dreaded word that strikes fear in the heart of every person with diabetes.. amputation.

Happy New Year everyone, I ask you to¬†please keep¬†an extra sharp eye on your child’s readings, so that you can continue having Happy New Years in the future, without extra specialists, medication, pain, discomfort….

I have loads of issues to post about, but I thought I should explain my absence first. I have many good days than bad now, and I spend a lot of time devoting myself to educating my family and local diabetes group that if Lance could get a complication at eight, then no one is immune. (In other words, it’s not just the “overweight, careless, long term type 2’s who don’t bother to take care of themselves.”)

 

My New Years Resolution is to continue educating and providing information about type 1 Diabetes, and assisting parents of newly diagnosed children. Let’s put it another way, the Health Minister will feel instant nausea when she sees my stationary in her mail pile. ūüôā

 

 

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Crazy Days And Mondays Always Get Me Down.

This is the first time today I have been able to stop and do anything else, other than deal with hyperglycaemia symptoms.

Sigh.

You see, every September, when the air starts to get a little bit sticky, and the sun begins to bite your skin, I KNOW we are going to have three months of pandemonium.

Lance is like me, he has skin of milk, that gets a light blush even from the smallest amount of direct sunlight. Unlike my mum, who wouldn’t have been aware 30 years ago of just how dangerous the Australian sun is, I have always been pedantic with sunblock application, floppy hats, and avoiding the sun during 11am and 3pm. I have suffered from some terrible sunburn as a schoolgirl, and as a result, I have horrible freckles on my forearms. (One of my fave actresses, Julianne Moore, a fellow redhead has them¬†too, which¬†has made me feel¬†less self-conscious of the fact that I have deformed¬†skin pigmentation times¬†two thousand.)

Julianne Moore Made Freckles Look HOT!

Julianne Moore Made Freckles Look HOT!

 I have managed to maintain a good skincare regime since I was 14-ish, and unlike many Aussie redheads, I have escaped the nightmare of a freckled-dotted face.( I happen to think freckles are gorgeous-just not on me.)

Anyway, back to the weather. We have been waking up at 6am lately, our linen dishevelled, and a slimy¬†layer of perspiration covering our bodies. Yep, it’s that time. The time when glucose drinks and jellybabies live beside the bed, and it’s simply too hot to stay asleep.

Which brings us to this morning.

I drifted off into a light trance-like sleep around 4am. I did one final test on Lance; he was 4.2mmol/L.¬† I slammed my head into my hand, out of sheer rage. I gave Lance a few gentle¬†shakes, and brushed a straw against his lips¬†that would filter a pure glucose mixture into his mouth. Naturally, he was resistant to drink it, he thrashed about the bed for a minute or two, whimpering. I don’t think he was feeling hypo, I think it was the fact that he woke to find it almost impossible to breathe, and that his bedclothes were glued to his skin.

Finally, he drank, and I felt content that he had consumed enough to get him through ’til morning.

I turned up the fan, pointed it in his direction, and he rolled over and went back to sleep.

I woke to my alarm bleeping, and the early morning sun blaring through a space between the window and the wooden slat blinds. I was sticky, annoyed and after listening to Lance’s breathing pattern for about twenty seconds, I was so¬†furious that I knew I would find him hypo.

I rolled over to find him fast asleep, his hair matted to his forehead, and his skin a ghostly white.

I fumbled with the glucometer, waited for the countdown, and felt immediate nausea when I saw a 1.9mmol/L greeting me. I jumped up, grabbed his glucose gel, sat him up, and squeezed myself behind him. His head dangled forward like a sad puppet, and I felt a few seconds of “Help Me”, directed at no one in particular, I just didn’t want to be alone in this situation.

Lance began to groan, which was a good sign, because it meant that I just might be able to get some glucose gel past his lips, and not sprayed back into my face. Fortunately, he was quite compliant, and sucked the sticky, thick paste straight from the tube. He actually had the entire dose, which was quite an achievement.

We haven’t had too many “one-ers” since Lance has been on his pump, and when he is really low, his hypo symptoms have become far less severe. The pump is such a blessing-Lance’s hypos were something that used to really worry me-I used to shudder imagining me holding him down as a 16 year old, copping a fat lip and a black eye-his strength is a force to be reckoned with now, let alone as a strapping young teen!

I would have looked like a victim of Battered Mother’s Syndrome.

His blood sugar had climbed up to 8.6mmol/L. He was crying, unable to get out of bed, due to the blinding headache that always follows an incident such as this. I administered a dose of ibuprofen (much better than panadol for post-hypo pain). He was just nailed to the bed, despite the glucose now surging through his blood, he was flattened, an insidious combination of the humidity and the hypo.

I lay beside him and he put his hand in mine,¬†I could see the beautiful pink roses returning to his cheeks, however, he was beginning to sport some sinister black circles under his eyes. So poetic, really. Everything related to Diabetes seems to have a compromise involved. You can eat this, as long as you have this…You can go here, as long as you test at x o’clock. You can play outside, as long as you have your shoes on. Nothing’s ever simple…easy…okay or without the cause and effect phenomenon.

When Lance finally woke, he looked much better, but he was very flat, the chatter that usually fills my house was absent. He smiled and nodded when asked a question, but he wasn’t himself at all.

BSL: 5.1mmol/L.

I gave him a glass of juice, which he was happy to drink. I then suggested that he would feel better after a cool shower. He said he didn’t feel like he could stand up, so I took in a plastic chair for his to sit on while the water refreshed him.

I had just managed to get the water temperature at a perfect level, when I saw it.

Lance had taken his shirt off, and was just about to continue undressing when I discovered that his site had come unstuck from his tummy. All of that squirming around and moisture in the air had obviously attributed to this-something that I have yet to encounter since Lance began pump therapy.

I calmly ( innardly, I was madly panicking) put Lance into the shower. I only changed his site yesterday. “Oh well,”I thought,”at least we can start the day fresh, with a new site, and move on.”

Lance was rejuvenated after his shower. He felt much better, and even requested some breakfast.

BSL: 5.8mmol/L.

He had two slices of wholemeal toast, a mango and a bowl of yogurt, all washed down with two tumblers of water.

Site change was successful, I put some antibiotic cream on the old site, just-in-case.

Two hours later, Lance commented that he was hungry and needed a rest.

BSL: 18.5mmol/L.

Ha! So, we are going to have a “Nothing Makes Any Sense” Day, are we?

That’s okay, I’m ready for it. Bring it on.

I gave a correction on his pump, made a low carb snack and presented Lance’s filled water bottle to him. He asked if he could do some reading whilst lying down. Naturally, I agreed.

Should I ring the Diabetes Clinic? I should. Better to nip this in the bud, even if they tell me what I already know.

I bought the phone into Lance’s room, and rubbed his aching legs whilst making the phonecall.

Hmm. No answer. I gave it another shot.

I was a nanosecond away from saying, “Hel..” when I realised I was listening to a recorded message. I left my details, a brief description of the problem and hung up.

I smiled at Lance. “You’ll be feeling great soon, honey. The wizard in your pump has given you the perfect amount of insulin to come back down to the healthy range.”

“I hope you’re right, Mum.” he replied.

I wheeled the air cooler in Lance’s room. After hanging out a small amount of washing, I had a wet face cloth wrapped around my own neck. The heat was just frightful.

BSL: 7.7mmol/L.

“You were right, Mum!” Lance called from his room.

“Hey! That’s fantastic news! How do you feel inside of your body?”

“Ergh. My legs really hurt and I have some tummy pains, too.”

“Maybe you are hungry and you could do with some food?”

“Actually, I AM really hungry!” he laughed. He requested some fruit salad and ice cream.

He had two bowls of FS and IC, and then asked if we could make pikelets.

It was the last thing I felt like doing, but I was happy for him to want to eat.

We whipped up a batch in no time, and Lamce demolished four pikelets. He appeared with our trusty carbohydrate book, and asked how much he should bolus for them. The recipe I used already has the carb values worked out per serve, so after completing some quick maths in my head, I gave him the number, doubled checked as he pressed it into his pump, and he pressed ACT.

“Do you feel full now?”

“No, not really.”

“Well. we’ll do a test in an hour, and we’ll see what your bsl is. Maybe I can make some¬†noodles with vegetables or something like that?”

He eagerly nodded his head.

Half an hour later, Lance appeared in front of me.

“Mum, I wasn’t feeling well, and so I did a test.”

24.4mmol/L.

I quickly handed him his water bottle, and got out a blood ketone strip.

Oh fantastic!!! Ketones had decided to join the madness!

The blood test showed 0.3% of ketones were present. Lance, ever the perfect diabetic, also did a urine test, “just for backup.” It showed 3+++¬†and 4++++ of glucose in his urine.

I picked up the phone and rang the doctor’s surgery.

No appointments. Okay.

I asked if I could speak to my doctor. This is an arrangement that he has given all of his staff permission to follow. If I call in an emergency situation, I am to be transferred through to his phone line. I’ve done it dozens of times.

“Look, I’m sorry Kate, Dr Dutch has gone overseas for two weeks. Therefore, Dr Congo is taking over all his patients. He’s really much too busy to speak to you at the moment. He has a difficult patient with him right now.”

“Well, Carol, I have a difficult problem that I need to speak to Dr about. What do you suggest I do?”

“At this stage, I could only suggest you present him to Emergency at the hospital.”

“That won’t be happening, could you please ask Dr Congo to contact me in between patients? I know he won’t mind.”

“Well, it’s Monday, and he hasn’t had a break, no lunch-nothing. So I beg to differ, he WILL mind.”

Haughty, miserable cow.

Lance corrected himself again. I investigated every part of his tubing, looking for air bubbles, making sure that the site looked as if it had “taken”…that was the only thing that I could think of. Or he had a virus of some description. My inner D voice told me that it was just “one of those horrorshow days” that come to haunt us every now and again, just to keep us on our toes.

5pm passed…Diabetes clinic didn’t call back. GRRRRRR.

At 6pm, BSL was 28.8mmol/L. I suspended the pump, and gave an injection of Novorapid. Lance was making frequent visits to the bathroom and guzzling back water. His legs ached terribly, he placed a pillow between them and rocked backwards and forwards to allieviate the pain. I changed the site. I could smell insulin the moment it was removed from his tummy. The cannula looked perfect-no kinks, no bends…

So, here I had my son, insulin dependent, receiving continuous insulin infusion, but blood sugar skyrocketing.  Temperature:normal. Ketones present. Limited medical help available.

BSL: HI.

I rang his endocrinologist’s mobile number, but another endo answered. We had met before, so he did know a little about Lance and his Hypos.

“Well, Kate, it sounds like you have it all under control. You are doing all the right things-I can’t fault what actions you are taking.”

Thanks a lot, Doc, I appreciate the compliment, but, !!!!!!!!!!!!

“Keep up the Novorapid. Call back if you are worried.”

Did that REALLY just happen??

I hung up the phone and calmly strolled into my bedroom. I buried my head deep into a pillow and screamed to release the fury and frustration I felt.

I packed up a bag of emergency items, and accepted that we were off to the Emergency Ward.

I asked Lance for one more blood test.

“Mum, I’m 13.6!!!!”

I couldn’t help but laugh-we were both so hot,we¬†had been tormented all day by crazy blood sugar numbers, had ridiculous encounters with our trusted medical team, and now-his blood sugar had dropped over 20mmol/L in 40 minutes..it really was quite comical, in a manic, crazed way.

So, now, it is 10.37pm.

Lance is 8.2mmol/L.

No ketones in sight.

Ravenous appetite present.

Leg pain is no longer present.

I have all of this documented, and I have an appointment with Dr Congo tomorrow. I want to show him just how crazy things can get. As much as I adore him,  he has bothered to learn more about Type 1, and has treated Lance very deftly and appropriately in emergencies-I NEED him to see the rollercoaster numbers and just how quickly situations can turn around.

For now, though, Lance is ready to rest his body. Afterall, his entire body went through quite a workout today, yet he barely moved a muscle.

This day has shaken me considerably, but pump or no pump, this is how Lance’s Diabetes responds to the¬†change in season.

We are fortunate enough that we can spend the majority of the summer in air conditioned luxury this year.

¬†(Thanks, Pat. You’re still looking out for us.)

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1 AND 2 Do Not Go Together.

Thanks a bunch to whomever is responsible..

Every September, Australia celebrates ‘What’s The Buzz” Day. We also have an annual Diabetes Awareness Week. That last sentence makes me want to¬†force 1000 fingerpricks until the end of the lancet is rounded¬†upon the person/people responsible for lumping type 1 and type 2 diabetes together.

Once AGAIN, the nation is utterly confused, and has no idea about where or what type of diabetes plays a role in childhood obesity. 

You See, Diabetes¬†Has Basically Become A Polite Way Of Saying:- “Lazy Tub Of Lard Who Injests Sugar and White-Flour Laden Foods Every Moment Of The Day…

There are newspaper articles with the latest count of people with “Diabetes.” (Notice, no distinct segregation of type 1 and 2 diabetes listed by the journalist or the source.)

There are fears for¬†the judge everyone loves to hate¬†on Australian Idol. Due to his punishing¬†work¬†load,¬†(starting the day at 3am to do his radio show, and then working through the day¬†with his Idol commitments), Kyle Sandilands quaffs up to 30 lattes and numerous litres of Coke, along with a packet of cigarettes¬†everyday.¬†He unashamedly admits that his diet is less than desirable, and he has recently been branded as an¬†appalling example to the¬†young listeners of his successful radio program, and the young fan base that religiously follows Australian Idol. Last year, he was¬†diagnosed with¬†elevated blood pressure that has him branded as a walking heart-attack. Like him, or loathe him, he is overweight,but he doesn’t deserve to have¬†the media¬†behaving like vultures, waiting¬†to see him on a stretcher."I Just Like Chocolate And Sweet Stuff Too Much..."

However, then, we have his fellow Australian Idol judge, Marcia Hines, who has lived with type 1 diabetes for many years now. 

Despite being diagnosed in her mid-thirties, Marcia now spends every second of every day loving life. She has a successful career, a wonderful husband and a world-wide fan base.

Marcia-Our Type 1 "Idol."

Marcia-Our Type 1 idol.

So, you could imagine, to my dismay, Marcia Hines appeared on an advertisement during the verdict show of Australian Idol, warning fellow Aussies to get checked out by their doctor and to watch their weight. She then goes on to say, “Diabetes is a serious condition, hey, I’ve got Diabetes!”

However, there was no mention of the insulin pump that continuously infuses insulin into her body, so that she can focus on her job and not have to worry so much about what her levels are doing. Under her signature, bright attire, that compliments her cocoa skin so beautifully, lives a Medtronic insulin pump-currently only used for people with type 1 diabetes in Australia.

So, who on earth is reponsible for having the likes of Marcia Hines, speak about her condition so casually?

Is the Federal Government in a lather over the alarming surge of type 1 AND type 2 diagnoses?

Surely, Diabetes Australia aren’t using a valuable person with fame and recognition behind her, to plug diabetes as what happens when you “supersize”…

Someone¬†with Marcia’s celebrity¬†calibre is too¬†valuable to be fobbed off as a “Diabetic.” Why wasn’t she encouraged to speak about her work with kids who have type 1 diabetes, and the fact that she had to hide lollies in her chair when she could feel an impending hypo on live television??

So, we have one man, who is technically, “obese”,¬†and has not even uttered¬†any fear of contracting type 2 diabetes, and then, a disciplined, highly respected woman, who has lived with Type 1 Diabetes for almost 20 years, almost “forced” to disclose the fact that she has an auto-immune condition, for the pure purpose of shock advertising..

“Wow, if Marcia Hines has Diabetes, I could get it too! I mean, she’s in her late fifties and she looks amazing!”

If this is the case, I am utterly sickened.

 Marcia responded to a letter that Lance and I wrote her at the beginning of last year-she commended us for our fundraising efforts. She also took the time to write some inspirational words to Lance, encouraging him to never look back, and to allow type 1 diabetes to make him stronger.

(Lance was so starstruck, and impressed that he had received a response from the female judge of Idol!!)

I just want to get one thing clear.

I hold no resentment towards anyone who suffers from type 2 diabetes, no matter if it was bought on by lifestyle choice, heriditary factors, the end result of suffering from Gestational Diabetes, or even if certain medications caused beta cell damage.

It’s ALL tragic, and concerning for anyone, no matter what age, sex, race…IF YOU ARE SERIOUS ABOUT LOOKING AFTER TYPE 2 DIABETES, AND LESSENING YOUR CHANCES OF COMPLICATIONS, IT IS REALLY HARD WORK!!

However, when people see my son, and associate him, or me, as his mother and carer, with images like this:

Images Such As This Are Hammered Into Our Heads Through Advertising. People with Type 1 Diabetes Are Thrown Into The Same Category. SHAME!!!

Images Such As This Are Hammered Into Our Heads Through Advertising. People with Type 1 Diabetes Are Thrown Into The Same Category. SHAME!!!

I cannot begin to describe the anger and hurt. It’s¬†easy enough to say, “Ah, take it with a grain of salt..”,¬†“people are ignorant..’¬†This is MY son that¬†people (who think they ARE right!!)¬†are casting judgement upon..¬†MY son, who did not ask, or deserve this condition, and yet is asked almost everyday a variation on the same theme.

‘Did Mum give you a lot of sugar as a baby?”

“Does Mum have diabetes, too?”

“You shouldn’t be¬†drinking soda if you have diabetes!!”

“At least you don’t have cancer.”

I am¬†the first to admit that I tend to harp on this issue regularly in my posts.¬† I only have one child, and¬†I¬†gave my ALL to make sure that he had everything and was given the very best of care. Yet, when people give ME a look of “Well, you learnt the hard way, didn’t you?”¬†I could almost scream and stamp and have a tanty like the best of them.

I’m tired for Lance, having to defend himself.

I’m tired, full stop.

Whoever is responsible for this disgraceful and heartbreaking advertising, you are messing with some really passionate and like-minded parents!

However, on a brighter note, my brother, (who last saw Lance just before he got his pump in late¬†July,)¬†caught up with him on the weekend. He was astounded¬†by “how at peace, and how¬†calm” Lance seemed, and how much healthier he¬†appeared.¬†(My brother is a man of very few words, so¬†coming from him,¬†these observations meant so much to me.)

I do apologise for the venomous rant, and I never want to hurt anyone by doing so who has Type 2 Diabetes.

It’s just this “obesity crisis”…it’s the topic on everyone’s lips. It’s heartbreaking to see a morbidly obese child who IS Lance’s age, licking the last morsels of Cheesel salt¬†from their fingers… I am simply blown away that a parent could become so ‘relaxed’ with their child’s wellbeing. It takes so much work to undo years of bad habits associated with food. Maybe these kids feel like I do, angry that they have suddenly become persecuted and¬†in the limelight for all the wrong reasons.

I appreciate that the government are not taking this grave issue lightly, but the spotlight is being falsely aimed at a demographic who have never had an issue of any kind with obesity!! 

¬†And of course, you know the first¬†disease that¬†comes to mind¬†as a result¬†of “indulging in one of the deadly sins”.

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