Archive for October, 2007

Project 365:Australia

I was browsing through my fellow D-bloggers’ sites a few days ago, when I came across Penny‘s. She is the mother of a young boy as well, and I share many of the same experiences and feelings that come through in her writing.

Then I noticed a link a entited Diabetes 365 Project.

I looked at photos that seemed all too familiar of “hypo eyes,” the many tools required to operate glucometers, insulin pens and pumps, a mini library of books about Diabetes. I discovered that this project was a year long commitment-all that is required is one photo a day that somehow relates to your diabetes life.

I was just about to click on the link, when an idea came to mind. There is a phemomemal amount of devoted and commited D bloggers in the US. However, in Australia, blogs about Diabetes is a relatively new concept. I thought about our coming election-if Kevin Rudd is elected, and therefore, a new Health Minister-a whole new awareness campaign will be required. ( We have already punished the Howard Goverment with copious letters, parcels, photos, dvds, even a visit to Parliament House.)

So that’s where Project 365:Australia was born.

www.project365australia.com

I contacted my good friend, Liz, who knows my situation well and walks in my shoes as a carer. I told her about the concept and we immediately began brainstorming ideas. We realised that we could provide Australians with a new and innovative awareness tool.

Our politicians have read the facts and statistics, they have heard the heartbreaking and frustrating stories. However, it is very rare to actually see footage or live action of a diabetic receiving an insulin injection, or of how the appearance of  diabetic dramatically changes when their blood sugar is severely depleted.

We have commited ourselves to the challenge of taking one photo a day until the 1st November, 2008. Liz has worked tirelessly on creating a website which is now available for participants to start adding their websites into. I have been busily inviting the many diabetics I have come to know over the past five years to take up the challenge.

Tomorrow marks the 1st day of November. November is internationally recognised as Diabetes Month. This is my contribution to creating awareness about Type 1 Diabetes, Type 2 Diabetes, Diabetes Insipidus and Gestational Diabetes.

Please visit www.project365australia.com for further information.

This project is dedicated to my son, and to James, who both suffer from brittle forms of Type 1 Diabetes. Their bravery, and commitment to continuing to teach people, despite many frustrations has made me want to fight for their emancipation of this horrible condition.

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Sickening-Part 2 of 2

After the doctor debarcle, we both came home and rested. I spent the whole of Friday performing an absurd amount of tests on Lance’s scarred fingers-each finger represents a different journey over the past five years. I was only game to give 2 units of Novorapid every 2 hours. You don’t realise the intense strength of insulin until there is no food involved in the equation.

We were both lacklustre and watched Ice Age 2 and Lassie together. It helped pass the time. Whilst we were sitting still, it felt like we were assisting the recovery process. That was until I got stung by a 3.0mmol/L reading. Ouch.

Lance looked ok. He was lucid, coherent and had no symptoms of hypoglycaemia whatsoever. I know that Novorapid is savage as a pack of dingoes when it peaks, and by my calculations, this was perfect timing- it was about to devour the little amount of sugar remaining in Lance’s blood and then dump him into a hypo that reeked of terror.

Trying not to allow any obvious panic transfer into my tone, I explained the situation to Lance. He understood that he was low, and that he had to eat. The only problem was that he was still suffering from the nausea and cramping associated with this virus. He told me that there was NO way he could eat anything. I couldn’t even bribe him with the most delicious of treats reserved for special occasions. I exhaled in sheer frustration, and closed my eyes to try and establish some clarity. It was then that I realised that the infamous orange box  was the only way to reverse this situation.

I had one more trick up my sleeve before I resorted to that. Firstly, I did another test. 2.2 mmol/L. Now Lance was becoming irrational and creating very eccentric sentences. The glassy glare was just starting to cloud the mesmorising blue of his eyes. I had to act fast.

I rushed to the kitchen and grabbed a squeeze bottle of honey.( Bees’ wee, as Lance likes to call it.) I opted for the sublingual method of absorption, as I knew that it was becoming increasingly dangerous to give him anything orally whilst he was staring in the face of a severe hypo.

I squeezed a dollop of honey onto my finger. I opened his mouth, and rubbed it underneath his tongue.

“Mum!!!!!!!! Why are you harrassing me for? You know I hate jam..!”

“I know sweetpea, will have you better very soon,  I promise you.”

 He looked into my eyes and fell into my arms, sobbing and petrified. I could tell he was really scared, as well as feeling terrible from the illness and succumbing to the all too familiar synptoms of a severe hypo.

He fought, kicked, wriggled and clasped both hands over his mouth so that I had to unpeel them. I applied 3 more globs of honey, and carried him into the kitchen to clean both of our hands.( A little bit of honey certainly goes a long way!) I still felt sticky even after a shower later.

OK Lance, this is your last chance. You have to be over 5mmol/L or bust.

I closed my eyes for the glucometer countdown. I could  hear a blood curdling scream from long ago as I imagined the glucogon syringe piercing his thigh.

6.2 mmol/L. Again, he had made it by the skin of his teeth. I don’t know how he does it.

I hugged him tightly until the sobbing had subdued somewhat, and then showered him thoroughly. With a fresh set of clothes and a hopeful outlook for tomorrow, I laid him on the sofa, and he was encouraged enough to sip a Gatorade popper. I took this opportunity to have a one minute shower myself, and semi- recover from the trauma of force feeding my son who had screamed like I had whipped him a dozen times. It never gets any easier-, the pleading,desperate parent versus the professional conman, who, by now is an expert at crafting very manipulative ploys to try and persuade me that I am dreadfully mistaken in assuming he is hypo.

The shower only relieved me from my stickiness. I took two Panadol to try and relieve a most vile headache. Lance listlessly watched an episode of Scooby Doo, and not surprisingly, drifted off to sleep. A hypo of that calibre must expend a tremendous amount of energy, especially when you have barely any to begin with.

Saturday arrived. We awoke feeling rested, but still eugh. Lance woke with a blood sugar reading of 5.2mmol/L. It was a miracle that he didn’t have a hypo induced seizure during the night. He had some blueberries and watermelon for breakfast, but not enough to even warrant giving insulin.

At lunchtime, he seemed to make a miraculous turn around! He said he had a craving for a grainy, seedy breadroll with vegemite. I happily followed up with his request. I had body aches and a slight temperature, however that was pushed well aside as I was so, so delighted that Lance had actually requested food. Oh..imagine not having to face the prospect of heading off to hospital this time!

Lance snacked well all afternoon, and even managed to concentrate on completing some pages of an advanced activity book. His bsl was 17.9mmol/L. I decided to give the Novorapid a miss for his evening insulin, and settled on giving 5 units of Levemir.

Around 9.30pm that evening, I noticed that Lance had regained his pallor from the day before. I asked him if he felt ok, and he admitted that his head hurt and he wanted to go to sleep. I pressed two Nurofen Meltlets into his hand, assuring him that they would definitely help his headache. I was desperate for sleep, as I had started to shiver due to a 39 degree temperature. I also had a headache that was up there vying for the worst cranium pain title of all time. I removed the glucometer from its case, and asked Lance which finger he wanted to use. He sat with his eyes glued to the screen. I immediately grabbed his hand, releasing the two tablets I had given him 10 minutes earlier.

Glucometer reading: 2.2mmol/L.

I started to tremble with fear and panic. I was so ill myself that any rationality I had was completely gone. I clutched a Glucagon Kit and wrung it in my shaking hands. I knew if I gave it to him that his blood sugar would go up, but he would face another day of vomiting and a blinding headache. That would mean hospital, and anti-vomiting injections and Panadol suppositories. The post-glucagon illness affects Lance dreadfully, which is bitterly ironic, considering that without it, he could easily go into a diabetic coma or die.

I grabbed a can of Ginger Ale, and placed a straw in between his lips and encouraged him heartily when I could see liquid being drawn up into his mouth. He was strangely cooperative this time, even though he was in a zombie like trance. I also got him to chew on four mentos, and eat three quarters of a reasonably large apple.

Glucometer reading: 5.6mmol/L. After all of that!!! I was starting to get really angry at all of these unexplainable, unpredictable readings. Worse still, I knew I had made a serious error in giving him the long acting insulin. It just didn’t sit right.

At about 4.15am, Lance and I woke simultaneously. I woke because Lance had practically drowned both of us in another torrential downpour of  ginger ale/mentos/apple mudslide. We had to drag ourselves to the shower, wash our hair, get into clean pj’s. I then tucked Lance into the sofa whilst I inspected the damage to my bed. Every piece of linen had been slimed. At that moment, I wished that I had a simple sheet and doona arrangement on my bed. But noooooo! I HAD to have bolster cushions, a velvet bedspread, a duvet, European pillows not to mention the rest. It ALL had to come off. We ended up moving into the guest room. At 4.30am, Lance’s blood sugar level was 2.5mmol/L.

I silently screamed till it hurt.

I gave him four glucose tablets crushed up which he swallowed eagerly. The release of that rancid cocktail was very cathartic..he snapped back into his old cheerful self in no time. After cleaning the floor and sheets, it was obvious that none of the ginger ale etc had been digested. It all came up the way it went down. The “blockage” seemed to have cleared. Those 4 glucose tablets hiked him up to 7 mmol/L. He easily went back to sleep, and seemed relaxed and peaceful. I tried to rescue my linen by washing and scrubbing furiously. 7  loads of washing had been done by 8am.

Lance woke looking much better..his headache was gone, he had some energy, but still no appetite. Yet another day of juggling insulin around the clock with only a few mouthfuls of food consumed all day.

It’s still not over.

Today, he awoke with a bsl of 14.4mmol/L. I was feeling back to my old self also, it was quite a nasty bug that we both had! The Diabetes factor certainly exacerbated the situation tenfold, I’m not sure what was worse, the constant worry of whether Lance would ever eat again, or the virus itself.

Around lunchtime, he took himself to bed and pulled his knees up to his stomach.

” Do you still have pain, sweetheart?”

“Yes, and it’s 200 out of 10 pain.”

I instantly knew what was wrong. Despite a blood sugar readng of 8.4 mmol/L, I was 100% certain that ketones had invaded. It all made sense. Almost four days without food, and dribs and drabs of insulin. I got Lance to do a urine sample, and the strip immediately turned from white to dark red.

4+ ketones in his urine. I instantly calculated am amount of Novorapid to get his bsl down. I called his doctor and told him the deal and how I was at the end of my tether. He said to come in two hours later. He was booked solid, but he always has time for Lance.

An hour later I tested his bsl again. Much better. 5.5mmol/L. He also asked for a plate of water crackers, cheese and fruit. Was this finally a breakthrough? The final test was yet to come. I got Lance to repeat the urine test. The angry red square was now non-existent.

The doctor was able to confirm that my initial fears of DKA were incorrect. I was so happy to be wrong.

Lance came to me at about 5pm and told me what he wanted for dinner. On the menu was porterhouse steak, a corn cob and as many vegetables as I could find.

Sometimes, I believe that a horrorshow extended weekend like this one is actually a good thing to experience. (Obviously, it wasn’t at the time, with increasingly difficult challenges pelted at you, as well as being sick.) However, it definitely keeps you unfailingly observant and prepared for anything.

It’s very hard to believe that Lance was having a lot of the same symptoms this time 5 years ago. Diagnosis Day always seem to roll up with some huge drama or event accompanying it.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            

 

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Sickening-Part 1 of 2

Probably one of the worst things that could happen to a single parent and full time carer of a diabetic is when you AND your child are both struck down with a virus simultaneously.

Lance complained of having a sore throat on Thursday night, but as he was still chatting up a storm, didn’t have a fever and his blood sugar levels were happily sitting within the normal range for bedtime, I wasn’t overly worried.  I bundled him up and put him to bed, hoping for the best that Friday would be a fresh new day with no mention of further symptoms.

But…I should have expected the worst whilst hoping for the best.

Yes, the sore throat was gone, however, Lance woke as white as a ghost.

“Mum..I think I need a bucket, I’m going to be sick.”

I leapt out of bed and grabbed towels, buckets and clean clothes. I did the first fingerprick for the day, which was an unexpected 8mmol/L.

Lance sat on the floor with a bucket between his legs, overwhelmed with the waves of nausea that were passing through his body.

“Mum, I can’t stop yawning, and I have so much spit in my mouth.”

As I  quickly wrapped a towel around his pyjamas, I very narrowly missed being slimed by a cylinderical tunnel of projectile vomit.  After a horrible minute, at last he was still. I lifted his limp little body back to bed. I broke out into a sweat, recalling the other times when Lance had battled a gastro bug. Ironically, the past three Octobers have seen Lance so ill with gastro viruses that he has required hospitalisation due to insulin dramas and deyhydration. He required  round-the- clock fingerpricks and hourly injections of insulin whilst he was in carbohydrate shutdown mode.

Against his will, I gave Lance a dose of Maxolon Syrup. Despite its bitter, child-unfriendly flavour, it does retard the vomiting relfex, that’s IF you can keep it down.

It wasn’t too long after that when I had to grasp onto the wall, doubled over by an intense stomach cramp. Nausea almost immediately followed. I was also aware of a subtle pounding in my head.

Things went down very quickly from here. We soon had matching buckets beside the bed. I was amazed at how quickly this sickness had swooped on us, leaving us sapped of all energy and burdened with intense stomach pain and matching headache to boot.  Lance and I  both lay in bed, staring into each other’s dull eyes and washed out faces. We compared symptoms and it was blatantly obvious that we both had the same virus.

As Lance had an empty stomach, and had NO intention of filling it, I faced the dilemma of what to do regarding insulin. I reached over and grabbed the phone and dialled the number of our doctor.

He was at a Hepatitis C Conference. The other doctors’ at his surgery were double booked.

I was so overcome with lethargy and weakness that I could barely think of what to do next. Lance had just had 2 units of Levemir in an attempt to keep his blood sugar in a safe range. I staggered out of the bedroom to the office and flicked through my list of emergency numbers. Diabetes Educator. She would be able to help. Except…she has every second Friday off. I tried the Hospital Educator and got put through to a pager service. Ha. What to do…. After hours doctor surgery?? The only problem was that it wasn’t after hours…

 I called anyway, purely out of desperation.

We were lucky enough to get an immediate appointment as a result of a cancellation. I didn’t even feel as though I was well enough to drive the car, so I called a taxi company and booked a driver to take us there. I grabbed Lance’s bsl record book and got Chino ready to go. I locked the house and the three of us sat forlornly on our front steps, waiting to be picked up.

We arrived at the doctor’s surgery,checked in and fell  into two deliciously comfortable leather chairs that enveloped our aching bodies. That was probably the high point of the day.

The receptionist ushered us into an empty room. Chino’s nose was going overtime over both of our  exhausted bodies. We waited for the best part of 20 minutes to be seen by the doctor.

When he finally arrived, he cheerfully greeted us and bustled over to his desk. Without looking up from his computer screen, he asked how he could help us. I told him that I needed some guidance regarding insulin administration whilst my son was fasting as a result of an obvious gastro virus.

“Is he allergic to anything?”

“Yes, penicillin.”

“Any other health problems, any operations?”

“No, just the Type 1 Diabetes. “

He typed details with his two index fingers whilst stopping to make note of allergies and IDDM.  I was waiting for him to grill me about what insulins Lance uses, and how we could devise a plan to keep him safe with no risk of the worst possible scenarios, severe hypoglycaemia or DKA.

“OK, so what medications is he taking?”
“Novorapid and Levemir…I have everything documented in his record book..dosages, bsl readings, hypos. hypers..” I slid Lance’s Record Book towards the Doctor.( A quick flick through this comprehensive mini bible would answer any question about Lance, believe me.)

“My suggestion is to keep him hydrated.”

“Yes, I am on top of that.” I cheerfully (as possible) presented  Lucozade and a water bottle in front of him.

He seemed distant, but not overly concerned. I became slightly more relaxed by his demeanour, until……

“OK… well, I would…I would break his tablets into quarters and adminster throughout the day with MEALS (hello…vomiting?). That should keep any hypos at bay.” (!!!!!!!!!!!!!!!!!!!)

My jaw hit the floor.

“MY SON IS ON INSULIN INJECTIONS!! UP TO FIVE A DAY!!! I BELIEVE I INFORMED YOU HE WAS A TYPE 1 DIABETIC, AND IT IS CLEARLY EVIDENT ON HIS PATIENT RECORDS!!!!” My life is much like a cartoon, therefore it seemed appropriate that I saw a rotating halo of stars appear before my eyes. Either this blatant stupidity and ignorance sent my rage-o-meter off the rails, or I was becoming sicker by the minute. (I suspect the first.) Not even a hospital intern could make such a idiotic blunder. I was positively seething at his blaze approach to a very serious medical situation.

“My goodness! He is awfully young to be a juvenile diabetic!” he exclaimed, his tone shifting, and with the first bite of real interest since I had started speaking.

“Yeah, he is. He was awfully young as a 1 year old baby to have it too, mate!”

At this point, I accepted that I was dealing with another medical “professional” that puts all diabetics into the one basket..the one labelled “epidemic.” With over 140 000 people in this country suffering from Type 1 Diabetes, and 5 more diagnosed everyday, I feared for each and every one of them at that moment.   I actually felt like I had been transported back in time 60 years, when doctors’ would actually taste a suspected diabetics’ urine to see if it was sweet. That is the generation that this “doctor” belonged in.  I snatched back my precious record book and nodded at Lance to motion towards the door. We left without another word exchanged.

Lance was too weak to walk out of the surgery. He was weepy and exhausted so I lifted his 27 kilogram body and plant him on my hip. You can definitely tell he spent a lot of time there as a baby-he still “fits” there like a glove. I would carry him when he was unable to tell me that his legs were as “heavy as concrete” from high blood sugar, or “marshmallow-y and wobbly” when low, much to the disgrace of various family members.

“You mollycoddle that boy too much, Kate. Put him down and let him walk!!”

 As far as I’m concerned, that hip is available until it becomes a physical impossibility to carry him any longer.

I digress..

The receptionist flashed a winner smile at me, whilst whisking out a form fresh from a printer for me to sign.

“That’s $57 today thanks Kate! Wow, your hair is absolutely gorgeous! Who does it for you? Oooh and your nails! Are they real? Ohh and look, your little boy is a red head too. Well, kinda. Does it run in your family? Or is his Dad a redhead too?” This girl was way too chipper and zippidy-do-dah to be a doctor’s receptionist. Sick people need quiet, caring and empathetic staff. I imagined her saying, “That’s $57! +verbal diahorrea” in the same tone of voice to somebody just diagnosed with cancer. I think that gave me the courage to decline to sign.

Her smile suddenly faded. I very politely let her know that I had received no assistance from the doctor and that I had received no medical advice or prescriptions. ( It wasn’t an issue of money, far from it. It was a matter of principles. Why should I reward this man for making my son’s condition seem so trivial?) She looked at me like I had personally offended her.

“I will have to consult the doctor then.” The Disney charm that oozed from her every pore suddenly changed into frosty ‘tude. Despite my increasingly-heavier-by-the-minute appendage on my hip, a puppy pulling on his lead that was securely around my wrist, along with hypo kits weighing another kilogram in the other hand, I wasn’t going to let this rest. I was still horrified that a doctor of 20 years had erred so disgracefully.(I asked Cinderella; she said he had been a GP specialising in family health at this particular surgery for 9 years, and 11 years before that in Melbourne. You cannot expect me to believe that he had never treated a Type 1 Diabetic of any age presented with vomiting before.)

Cinders trounced back to her place behind her desk, refusing to resume any eye contact with me and stabbed a pen across a few official looking forms.

“No charge today,”she quietly muttered.

I left the surgery feeling defiant, but sickened by the mornings events. Ohhhhhh my stomach, OHHHHHHHH MY HIP!!!

(And, for the record, nobody “does” my hair, I am a true blue redhead. No, it does not run in the family, I am a freak child who has no redheaded relations. The whole recessive gene deal.  No, Lance’s father is not a redhead, more salt-and-pepper, except he dyes it ash blonde or platinum blonde, depending on his mood, and yes, my nails are real.)

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The Secret I Share With A Playboy Playmate.

I was browsing through a mag today- admittedly a gossip magazine, but definitely the most accurate and newsworthy read amongst the many various bunches of pages glued together with lies about plastic people. Week after week I see Britney, Britney, Britney, Paris, Nicole, TomKat, Brangelina, Jenny McCarthy…

Huh? Jenny McCarthy? I was immediately intrigued. The article was towards the middle of the mag, away from the papparazzi snaps of Britney, Lindsay, Paris and Mischa. The story was a feature article and exclusive interview with Jenny, listed under the sub heading “Coping.”

Jenny McCarthy-actress, author, mother and autism advoate

I have always associated Jenny as a Playboy Playmate, a FHM Covergirl, and a wickedly raunchy comic actress. I had no idea that she was a mother and a successful author of frankly funny books on pregnancy and motherhood. Also featured in the mag was an excerpt from Jenny’s latest book- a memoir describing her harrowing but ultimately uplifting journey since her son Evan was diagnosed with austism two-and-a-half years ago.

Jenny’s latest book, Louder Than Words: A Mother’s Journey in Healing Autism is critically acclaimed and is recognised by her peers as the first book you should read if you need to learn the ins and outs about autism.

Louder Than Words- A Mother’s journey in healing Autism

I settled into my sofa and aborbed each word with interest -here was another mother searching for answers about her son’s condition. I never thought that I would have anything in common with Jenny McCarthy.

Then a sentence left me frozen.

“Holding my convulsing baby as he tried to breathe…from that day on, I was not who I was before…”

From that day on, I was not who I was before. Such a simple sentence, but one that completely captures the horror and heartbreak I experienced when Lance had his first hypo-induced seizure. Watching his tiny body jerk and stiffen was an experience that I keep under lock and key in my vault of ” don’t go theres.” The seizure left me distant and vacant for weeks-I was even scared in my own home, often taking a glucagon kit with me from room to room.

It is difficult for anyone to understand how I felt that day. I remember an ambulance officer attaching a minature oxygen mask to Lance’s mouth and getting pushed aside to give Lance’s name, date of birth and other relevant details to the other ambo. Words were coming out of my mouth, but I can’t remember hearing them. All that was audible to me was Lance sobbing, in between jerks and muffled attempts to catch his breath. A part of me drifted away, never to return that day, and I fully acknowledge that the carefree, laidback, vivacious girl I was is gone forever, only to be replaced with a protective, concerned and fretful woman/mother.

Through a mother’s sheer grit and steely determination, Jenny McCarthy’s son has now improved ten fold after thousands of dollars worth of treatment. She also had a very similar outlook in regards to finding a potential relationship, saying “Who’s going to love me and my autistic kid?” ( I have the same type of thoughts regularly, and I am now comfortable with the fact that I could very well live the best part of my life as a single woman.) Jenny, however, was blessed to win the heart of Jim Carrey, a man whom she has dubbed “The Autistic Whisperer” because of his ability to “speak a language that Evan understands.. beyond doubt it was written in the stars that Jim and Evan were a pair.” 

Two totally different conditions in two entirely different kids. Different symptoms, different lives,  different nationalities, different hemispheres, different Mums. ( or in Jenny’s case, Mom.)

However I “get” Jenny McCarthy as a mother and a carer. She is someone that I will never get to spend a second with, but it is evident that our best intentions and interests lie with fighting an almighty battle to ensure our boys’  have the quality of life they so deserve.

 For more information about autism, visit

aspect.org.au or autismaus.com.au

 

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I Heart Living Cell Technologies. xx

I have a really severe case of Cure Hope.

 I got a lead on a secret trial that has been going on for years and I researched it and googled it hoping that it wasn’t just a over-eager journo trying to get a great Cure Story.

This time was different though. I got my lead through an amazing source, who is in fact one of the most respected and intelligent journalists in Australia. We met just over a year ago and had a very intense interview about all things IDDM.

I found this in my inbox yesterday.

Kate,

I’m sure this story posted this afternoon on the SMH website will interest you. The medication is not due for public release until 2011/12 but maybe there will be trials in Australia sooner than that.

Kind regards

What the?

She wouldn’t send me on a bogus paperchase?

I’ll just look at the headline, and no more. 

Who you foolin’ girlfriend? You gonna be searchin’ and scannin’ that page for dem nasty diabetes words you so love to bore every sister to tears with. That’s what I’m talkin’ about. Mm mmm.

My inner girlfriend was so right. I have been down this road so many times before and end up shattered for a week. But I can’t help it…I mean, I have to check it out, yeah?

So I searched and I scanned and I found a word that lit up in neon on the screen.

DiabeCell.

Check out the link. You can read the story about Living Cell Techologies (LCT) new Australian trial and success.

My six hour research frenzy regarding all things LCT has also lead me to to this fantastic article about how pigs have left one woman in Russia totally insulin independent, and anti-rejection drug free!

Rocky The Hero Pig

(I found this picture of Rocky the Pig. You divine creature!)

 

At 4:23 am, exactly 1 month away until my son’s seventh birthday-is this time different? Is it OK to hope? I am so desperate for him to be freed from the strangehold of this condition that I resort to ridiculous lengths such as staying up until near daybreak draining every sentence for some HOPE.

Here’s a glorious image of a human cell injected with DiabeCell.

Living Cell Technologies DiabeCell

This is my new screensaver, my mobile phone wallpaper and it’s burnt into every fibre of my being.

 

 

 

 

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Grape Cooler

grapes and pineappleGRAPE COOLER!

My Mum made a new drink sensation today.

I got to have a whole glassful. Mum put a strawberry on the side of the glass and a bendy straw in the drink. Because it had fresh pineapple in it, I only had to have one piece of fruit today instead of two!

I decided that I would post the recipe, because it’s really easy.

Grape Cooler

1 cup of unsweetened grape juice

1/2 cup chopped, fresh pineapple

2 cups of ice cubes

1 cup diet lemonade, chilled

1. Using a blender, blend the juice and pineapple until smooth.

2. Add the ice cubes and blend until slushy. Transfer to a large jug. Slowly add the lemonade (Fizz alert!) Serve.

Voila!

I’d love to hear if anybody tries this recipe and likes it as much as I do!

This recipe makes 4 serves. Each serve has 5 grams carbohydrates, gluten free, GI rating:intermediate.

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Something Chronic!

I recently received a form from Centrelink asking me to complete a form verifying if Lance’s Type 1 Diabetes still existed.

I am aware that these forms are required to ensure that a full time carer is being paid the correct benefit. I know that some medical conditions do improve or stabilize. I realise that some people may not continue to qualify receiving a fortnightly payment to assist with caring for a loved one.

However, this form does not apply to us, nor will it ever.

Nor will it apply to the thousands of kids in Australia whose parents’ lives are suddenly disrupted by the onset of rare neurological conditions, a horror car smash which leaves their child brain damaged or unable to walk, cruel terminal conditions like Batten Disease or any condition that is rendered “acceptable” by the Centrelink treating doctor as “carer allowance worthy.”

I was particularly lucky to recieve only one form in this instance. The letter accompanying it always comes with the threat:” if this form is not completed and returned within 14 days, your payment may be cancelled.” Usually, this form comes annually, and it takes a the best part of an afternoon to complete. You also have to make an appointment with your GP or specialist so that they can fill out a ridiculously detailed form and re-assess your childs’ condition.

The answers provided are then fed into a computer by a data processor, and the computer decides whether or not your child is sick or disabled enough to continue receiving expensive medications on the PBS List, and/or if their carer still is eligible to receive a $95 a fortnight payment to assist with doctor’s appointments and medical equipment.

Luckily for Lance and me, the computer deemed us worthy of continued Government assistance.

I am really impressed with the passion and commitment that Diabetes Australia have shown to make our Federal Health officials sit up and notice that Type 1 Diabetes is a serious, chronic condition. They presented facts that showed how a sufferer must have full time blood sugar monitoring, daily insulin injections, and measured and appropriate meals provided at least 6 times a day.

Therefore, I was pleasantly surprised to discover that Type 1 Diabetes is now considered a recognised “disability” by Centrelink. The paperwork is now cut dramatically and the infuriating questions such as:

“Is your child’s condition improving?”

“How long do you estimate that your child’s condition will endure for?”

are still there, but the intense detail is no longer required. A simple tick of the box marked “daily injections and regular blood glucose monitoring” skips you through the endless questions that used to paralyse me with anger.

I have been writing to Mr Howard and friends for almost a year now. I was first inspired after sitting beside a precious soul at Kids in the House last November-she was a VIP guest seated at our table, who I later discovered was the private secretary to our Federal Health Minister. We listened to parents of Type 1 Diabetic children deliver heart-wrenching stories about their frustrations and fears for our kids’ future. When the gala luncheon was over, she held my hand in hers, and asked me to promise her that I would write and give updated accounts about Lance’s condition to our politicians, and let them know first hand how demanding and cruel the lifestyle of a carer can be.

So that’s what I have done. I have written letters outlining severe hypos, hospitalisations, requests for more funding, (I even went to such desperate lengths as to send to PM and his wife a card congratulating them on their first grandchild. I know.) Every federal politician I have written to has eventually responded, each ackowledging in some way that they are sorry for the life my son has to lead. One chap known for his staunch nature even bothered to list encouraging Australian research and trials…

I implore of anyone suffering with a chronic condition to write to your Federal MP. Let them know that you live in their electorate. Give them the history of your condition. Tell them the hardships you face because of your condition. Find out facts and figures and present them. Ask them what the Australian Government can do/is doing to help.

After meeting with our nation’s politicians, I realised that they are just like anybody else. Most would have no idea that a child could suffer from debilitating arthritis or that a teenager suffering from profound and prolonged exhaustion (among other symptoms) has a long term battle on their hands called ME/Chronic Fatigue Syndrome. How often would they hear of a young family watching their wife and mother die from a heartbreaking auto-immune disease called Diffuse Scleroderma? They just don’t know.

It’s up to us to tell them. I can assure you that if you sit down with a pen or begin tapping away at your keyboard, the words will flow from your fingertips. Cover the envelope in flurescent smiley stickers to make it enticing enough for them to want to open. Hand write the address on the envelope to give it that personal touch. They will read it and absorb it, or they won’t. Either way, you have made a small step not only for yourself, but for the people in the world who may live with symptoms and never even reach a diagnosis.

Chronic disease is cruel and cunning. You have to make adjustments all over the show to fit it into your once established life. It crushes your self-confidence, leaving you feel like damaged goods. However, once you start to fight back, you can see glimmers of hope everywhere you turn.

Trust me.

Rainbow emerges after too many rainy days

 

 

 

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