Why did the insulin die in my pancreas?

http://www.youtube.com/watch?v=Z2uE0TlBZGc

Please watch and absorb……and bring the Kleenex!

I am in an internet kiosk with my son, watching his scarred fingers trace over the keys. He is oblivious to the pain, the discomfort. MAN! How does he do this? After watching this clip, I feel so alone. The Type 1 Diabetes Community is INCREDIBLE, but the frames of this clip are so simple, yet a replica of my life, my son’ life.

Please show as many people as you can the clip, it is a fantastic educational tool.

So much so that I can barely muster the strength to speak to my son for fear that my voice will break and I will not be able to let go of him.

To all the little pincushions., even if I didn’t live this life along with Lance, you would automatically be my heroes. Each and everyone of you. Your dancing smiles, your arms that are always prepared to embrace. People could learn such valuable lessons about how to live a better life from you.

Poetic. You fight for life and embrace it with gusto.

People who don’t value the blessing of good health could change their life from spending one day with you.

I have the pleasure to have met over 100 kids with Type 1 Diabetes in Australia, and I am friends with a few kids overseas through their parents.

I just want to scream at the top of my lungs how incredibly stoic, brave, heroic but at at the same time so oblivious as to what misery you go through.

Get your parents to give you an extra big hug tonight. Or if you know someone with Type 1 Diabetes, give them a hug and lots of love from Lance and me in Australia.

“Oh Shiver me Whiskers, I just got comfortable and I can hear them coming to jab me with that sharp thing. I better get a treat for this….”

By Lance

I haven’t been able to write lately as I have been fraught with concern and fear.

Lance had his 5 year checkup with the best paediatric endocrinologist in Queensland a week ago, and who actually treated him in hospital when he was diagnosed and with post diagnosis.  Just over 5 years ago, he tolerated me calling him at 2am in the morning asking “Diabetes for Dummies” questions and showed no sign of angst when I would call him at 8:15am on the freeway t0 get Lance’s insulin doses for the day. He’s the connsumate professional, parent friendly, has a fantastic relationship with children, especially those with an endocrinological condition. However, I sat in front of him, quietly petrifed as to what he might find in those just-warm-off-the-printer blood results.

He flashed a smile at me, and gave Lance a good inspection a few times over.

“Is this that same little baby whom I nursed and took that nasty drip out of your arm? My goodness! You have grown into a fine young man!”

Lance managed a polite grin, but I could tell he was anxious, too.

So Big Gun decided to stand with his pen in his mouth, whilst bouncing rhythmically off the wall.

(I could see Lance’s mind ticking over….”That’s dangerous, Doctor, the pen could go down your throat and you could get injured..maybe you should stop..” I pleaded with my eyes at him to just ignore it and thankfully it worked! If he had said something, however, I think that Big Gun would have had a hearty chortle. Seriously, Lance really is 7 going on 40 most of the time…)

Lance couldn’t keep his feet still, but I tried to turn his attention my way. In my peripheral vision, I could notice Doc making notes and circling results.

I hoped there was a ladies’ room close by.

“Okay, young man, all this blood that they drained out of you tells me a few things, but in general, you have been helping Mum look after yourself, haven’t you?” he asked.

Lance warmed up a little then. “Well, I do make a habit of eating two pieces of fruit and 5 vegetables a day. I don’t know if that helps?”

“My word it helps young man! (Our gorgeous Big Gun has an equally gorgeous English accent.) Who taught you that piece of information?”

“Mum did.” He proudly looked over at me.

Then Big Gun decided to sit down.

Okay. I have to ask you a favour, Lance. I need you to be really brave and get one more blood test, and tomorrow morning when you wake up, can you do a wee in a bottle for me, and two times after that? You wouldn’t mind doing that for me, now would you?”

This guy is  fantastic with children. His sing-songy voice is almost hypnotic.

Lance shook his head, and sighed, almost with a wobbly bottom lip, but replied, “What’s one more blood test?”

“Good Lad. Gosh Mum, the kids I care for aren’t half as cooperative as this! I have heard that you have had a lot of adventures over the past five years. You have made a lot of money for Type 1 Research, haven’t you?” His eyes twinkled and the corners of his mouth curled upwards.

Lance looked at me, wide eyed, wondering how on earth he could possibly know!

“And you’ve been to Canberra? How was that?”he asked.

“Oh,it was bad. My friend got DKA and vomited all over the stairs at Parliament House. She had to stay in Canberra for a day or two to get some insulin into her. She had to give a speech in front of the then Prime Minister, so her blood sugars went crazy.” he lamented.

Oh dear, that was a big job to do, so I can understand why things got out of control there. At least you wouldn’t have been worried for her, because she would have been in the very best of hands.” the Big Gun queried.

“Well, I still worried regardless, We were like soulmates.” Lance informed Big Gun.

Okay Mister, do you want to go and play in the kids’ area whilst I have a quick chat to Mum about your next appointment. I’ll  leave the door open so you can see her red hair, okay?”

Lance bounced of the floor, and forced the most sincere hug on The Big Gun.

“Thanks so much for saving my life when I was a baby. I never got to tell you because I couldn’t talk very well then!” said Lance. It was something that had instantaneously popped into his head to do, because it certainly wasn’t rehearsed. Nevertheless, it left me quietly weeping, that five-and-a-quarter years have passed and Lance knows enough about Type 1 Diabetes, and HIS Type 1 Diabetes to know that this man pulled him out of the wild currents he was dangerously being swept away into.

“Kate! Great to see you. Amazing boy, he’s a champ, isn’t he? One of a kind. You’ve done so well with him.” I couldn’t help but feel chuffed that I was receiving praise by a man who fights so hard to prevent complications in children, instills education in parents, and is definitely a patron for the Type 1 Diabetic community.

“Yeah, it’s been a bit of a shaky year, with the coeliac diagnosis finally coming through, and 4 teeth extracted. I am a bit of a nervous wreck to tell you the honest truth,” I confided for the first time to anyone.

“4 teeth extracted?? Oh poor chap. At leas he was asleep whilst they did it.”
“Oh but he he wasn’t. The dentist decided to use nitrous oxide and do it in the chair.” I stated.

The only thing coming from his shocked, open mouth was a tunnel of exhaled air, for quite a few seconds.

“Well!! This explains what I wanted to talk to you about. And it makes so much sense, considering he went through that trauma, and you would have had a cat-and-mouse game with insulin and trying to get food into him. Oh my goodness. At least in hospital, he would have receive a dextrose drip with his insulin included, and you wouldn’t have had to worry about a thing! People like to do the things the long way around, don’t they? Oh boy.” He made copious notes about that week, and looked at my notes and  readings and he instantly could see why his A1C had jumped from 6.2% to 8.5%.

Now it was my turn to inhale a tunnel of air….

“Now with that extra blood test I have ordered, I want to check that Lance isn’t lactose intolerant, and I’m looking for a gastrointestinal condition that pops up in Type 1 Diabetics. It’s called Gastro Oseophogeal Reflux Disorder. I JUST want to make sure that he has nothing else causing his stomach problems. This isn’t rare in Type 1 Kids, it’s a bit unusual to see in one so young. But then, we have to remember that Lance is an old-timer. So we are going to grab some more blood, see what comes back from that, and then possibly get him back in for a gastroscopy. Oh, and by the way, cholesterol-perfect, Liver function tests-perfect, thyroid test-perfect-immunoglobulins-perfect-that’s why I know you are looking after him so well!”

“He was actually hypo when he went in for the blood work; he was 3.5mmol/L, so there wasn’t a high level of sugar in his urine, so that’s why I want to do the conclusive morning one, to look out for protein etc. Overall, well done. Don’t be phased by the HBA1C test- it all makes sense now. So good to see you. We’ll talk again after you get those bloods.”

And that was it. Tests for 2 new conditions, suspicion of 1 very likely gastro disorder with the acronym of GERD. “My son has Type 1 Diabetes, Coeliac Disease and GERD.” At least it might stop people in their tracks and concentrate on that rather than the”Will he grow out of it?”old favourite.

If you have a Big Gun in your State/Territory/City-GO AND SEE THEM! The beat the pants of the info a paeditrician can give you and will put your mind at rest. Parents who have a child with Type 1 need that comfort and support more than anything.

 My special friend Cathy sent me this, and I thought it was especially apt for mothers’ who battle with numbers and carbs all day long, and even at the end of a repulsive day, they can still conjure up the warmest hug for their families.

Here’s to all the Mum’s who do SUCH a fantastic job looking after their little ones!!!

Cate Blanchett is my all time heroine.

Without seeming like I am  fraudulently boasting, I feel like that if I could have only opened a few more doors in the Australian Arts Industry, I could have had the pleasure of taking her and her families’ jackets whilst they dined in Sydney City. I was SO close.

However, it was not to be, but I had to spread my heartfelt congratulations  to her for her role in the Bob Dylan Biopic. ( The character she plays is a man! Is there anything this woman cannot do?)

Cate won the Best Supporting Actress award for her role at the Independent Spirit Awards.

She looked consistently sublime, glowing in her fifth month of pregnancy, and quietly paid tribute to Heath Ledger, her co-star in the film, friend and fellow Australian, and dedicated her award to him, as did director, Todd Haynes.

The Independent Spirit Awards are the day before the Annual Academy Awards, where Cate is duelly nominated. Personally, I think that her statuette at the I.S Awards would have left her just as elated as the ‘little gold man.’ Her achievement in this film is frighteningly amazing, nothing short of brilliant. However, she isn’t one for fanfares and accolades.

Haha. Listen to me. I’m in fantasy land, imagining that I’ve just spent the summer with her, drinking iced tea, running off to meet Karl Lagerfield regarding costumes for The Sydney Theatre Company upcoming theatrical delights. Cate has devoted herself with Andrew (’we are on first name basis, of course..) to producing plays whilst her ever growing family grow up and plant their roots in Australia. Cate and I grew so used to having stylists come to our suite in Sydney and laying out clothes for us to sample, swanning off to premieres, and letting her boys play with Lance. Conversing in French, of course.

Did I happen to mention that I worship this woman?

(I am not deluded or pyschopathic, simply an adoring fan, with an overactive imagination.)

For what it’s worth, I do hope that she walks out of the Auditorium tomorrow with her bun safely in the oven and at least one statuette clasped in her Harry Winston bejewelled hands. It would be an apt opportunity to distract the still-grieving Australians the chance to switch their attention to a woman who knew him well, and adored him. It’s time for us to leave Heath rest in peace.

I turn 31 on Monday.

31 candles.

I am sitting here pondering about how living with diabetes has changed ME.

Sometimes, I find it difficult to remember how I was. That’s okay though..the whole circle of life thing..I accept that we all go through different stages in our life, it is just really infuriating that I REALLY liked who and where I was before the diagnosis.

I used to be a crazy op-shopper. I’m not talking about Mary-Kate Olsen boho gear, but I loved the thrill of the chase. Finding a designer bargain in my size that some old love had marked down to $2 would see me skipping down the street, chuckling with glee.

I used to walk for miles, exploring the beauty of Brisbane’s southern suburbs, arms full of mangoes, bags spilling over with frangipanis.

I used to visit an old Lebanese man in his shop. He made the most incredible turkish delight and baklava..we used to chat about anything and everything.

Speaking of which, I used to talk a lot more, too. People who know me will think that’s a scary prospect, but I spend too many hours just reflecting these days.

The excitable, girlish trill in my voice is no longer present; I’m too tired to even fake it.

Knowing that five years has already passed doesn’t overwhelm me.

Knowing that Lance has Diabetes doesn’t overwhelm me.

Knowing that he is growing up before my eyes doesn’t overwhelm me.

But the fact that I was a happy, life-loving, free-spirited 25 year old, who had just started living the life I had carved out for myself, does overwhelm me. My marriage ended, the laughter ended, and, just like that, it was all about Lance, me, and a tiny box named “insulin.” That’s it.

SO…. 31. Single. Looking. The beginning of the ascend to 40. At the end of the day, I still have to measure up insulin, prepare food, be wary that Lance doesn’t scoff too much cake on the side and spend the day monitoring him whilst flashing the occasional faux smile.

I’m not complaining, or feeling sorry for myself; I’m just telling it how it is.

Oh Birthday Fairy, please send me an original and exceptional  man who will love me for who I am, love Lance for who he is, and accept Diabetes as merely a bunp in the road when it comes to the grand scheme of things.

Handling and raising an energetic and incredible child is a joy. When the sugar levels aren’t where they should be, that’s when I really miss a pair of loving, warm arms to scoop me up and and give me some sugar. (And I don’t mean nutra sweet either!) I want the real deal, become I could desperately use a little lovin’.

I dare you, Birthday Fairy…send me my man before I’m 32. (31-and-a-half would be preferable!!)

It is recounted that at King’s College in the Strand around the time of the war, the Chief of Services would inevitably begin the year’s rounds by teaching “a singularly important principle of medicine.” He asked a nurse to fetch him a sample of urine. He then talked at length about diabetes mellitus. “Diabetes,” he said, “is a Greek name; but the Romans noticed that the bees like the urine of diabetics, so they added the word mellitus which means sweet as honey. Well, as you know, you may find sugar in the urine of a diabetic…”

By now, the nurse had returned with a sample of urine which the registrar promptly held up like a trophy. We stared at that straw colored fluid as if we had never seen such a thing before. The registrar then startled us. He dipped a finger boldly into the urine, then licked his finger with the tip of his tongue. As if tasting wine, he opened and closed his lips rapidly. Could he perhaps detect a faint taste of sugar? The sample was passed on to us for an opinion. We all dipped a finger into the fluid, all of us foolishly licked that finger.

“Now,” said the Registrar grinning, “you have learned the first principle of diagnosis. I mean the power of observation.”

We were baffled. We stood near the sluice room outside the ward, and in the distance, some anonymous patient was explosively coughing.

“You see,” the registrar said continuing triumphantly, “I dipped my MIDDLE finger into the urine, but licked my INDEX finger, not like all you chaps.”

This is Lance, proudly displaying his “Transformers” tattoo.

You would never guess that his blood sugar level was 22.3mmol/L.

Anyway, just wanted to share a photo that melts yet breaks my heart.

http://www.thepetitionsite.com/takeaction/252413738

 It’s 2008 already! What is going on with discrimination laws?? 

“Courts have been throwing out diabetes discrimination cases because of an absurd Catch 22, siding with employers who claim that a person with diabetes is “too disabled” to do the job, but not “disabled enough” to be protected by the laws!”

 Meet Stephen Orr, a pharmacist, who was given his marching orders for taking breaks to make sure everything was running smoothly with his blood sugar levels.

Deplorable, deplorable, deplorable.

We bring up our children with Type 1 Diabetes by allowing them be a kid first, then teaching them to take care of their levels and control, and how to project themselves as confident, capable men and women in society. 

So, how does this “loophole”affect  children like Lance, Riley, JJ, Brendon, Bren and every other child whose parents are lovingly nurturing them to become happy, healthy men and woman, whilst taking care of their Type 1 Diabetes day-by-day? 

(You only have to read your JDRF magazines and accidentally stumble across high profile sportspeople, musicians, businesspeople who have conquered the abhorrent “disabled” tag that is slapped far too often onto people with diabetes.)

I’m sitting at the bottom of the Southern Hemisphere, and my heart goes out to the Stephen, who lost his job and can’t do zip about getting it back. Yet. However, to all my American D Bloggers, if there was EVER a more determined bunch of people to help take action and make a difference, it’s YOU! Spread the word and see if we can’t get your Senate to forget about Iraq, forget about the elections for just a moment,  and listen to the little people who happen to have very big voices about a VERY big problem!

Okay, I’m pretty mad..

My rage stems from the revamping reality rendevous with fifteen morbidly obsese adults thown into a palace and literally assaulted in every direction by two uber buff, tanned, gorgeous trainers. otherwise known as:

The Biggest Loser.

Series 2.

I have my own personal opinions about the risks that are involved with this show, but I am troubled by something else. If they can hire a dietician to stock the cupboards with low-fat, low-carb choices, and medical staff on standby to whisk away a competitor with chest pains to hospital, why, OH why, can’t they find a decent editor to cut footage using the “D” word without it’s Type 2 title?

As much as I detest the show, it’s often in the background when I am cleaning after dinner. I recently overheard one guy audibly upset as he  stood on the scales, tearfully taking a nostalgic trip back to when his brother “died of Diabetes.” Hmm. He too, had been diagnosed with Type2 Diabetes, ( even though he only said, “Diabetes”, I’m just setting the story straight) and was fearful that he could be next if he didn’t lose the weight.

Fair enough statement.

But, “died of Diabetes?”

HOW COULD THE PRODUCERS OF THIS SHOW ALLOW THAT COMMENT TO BE AIRED???

For every person with Type 1 and Type 2 Diabetes who  watches this show in Australia, I would like to apologise on behalf of Channel 10 and the producers of “The Biggest Loser” for allowing that ludicrous remark to be aired.

I’d also like to see the trainers stick a “Type 2″ in front of the Diabetes that they so love to talk about;  “everyone of the contestants in the house are at huge risk of developing diabetes…”

Then, I did some research about last year’s contestants. One guy had gone into the house with Type 2 Diabetes, and was on medication. After appearing on “The Biggest Loser,” he proudly announced that his Diabetes had been cured. ( Which basically means he probably lost enough weight that he was able to stop taking oral medication.)

Is it any wonder I have people rolling their eyes, laughing flippantly, and casting their opinions upon me and my child when reality shows forget to mention the “other type of diabetes?”

 Ahem! Ahem! There’s 140 000 of us furiously waving our hands in Australia with Type 1 Diabetes! Would somebody with Type 1 Diabetes and a weight problem be allowed on the Biggest Loser? I should think not.

Pfft.

I’m really annoyed.

Channel 10 already have my disgruntled comments sitting in their inbox.