Archive for October, 2008

It’s Getting Complicated.

I recently wrote about Lance and the shocking discovery of symptoms with a sinister familiarity to Peripheral Neuropathy. Now that I have the ability to look at the words without feeling extreme nausea, I wanted to give everyone who commented and sent encouraging emails an update.

Firstly, I have been very cool and calm when it comes to Lance’s night time groans and discomfort. I don’t want him to latch onto the fact that I am stricken with fear. I put my Cate Blanchett hat on, and while remaining completely honest with him, I cannot show him that I’m fraught with concern.

We have been to our GP, who has an amazing rapport with Lance. I dislike speaking about Lance’s Diabetes in a negative light to anyone when Lance is present. Therefore, I asked him to tell Dr Congo about his symptoms of hot, burning feet at night.

“Well, it doesn’t matter if it’s the coldest night, it feels like there is a bushfire in my feet. Sometimes I have to look at my feet just to check that they really aren’t on fire.”

Dr Congo turned his head towards me, searching for my reaction. His reaction made me want to be sick.

“Lance, tell me, do you get pins and needles often?”

“Everyday.”

“Can you point to where you feel the bushfire the most?”

Lance grabbed his ankle, then rubbed over the top of his foot, tracing his finger over blueish veins.

He also added that he has mild tingling in his lower calf.

Dr Congo pressed his middle and index fingers together on Lance’s foot. He sat in silence, concentrating.

He then performed a reflex test on Lance’s kneecaps. Normal response noted.

Dr Congo swung around on his chair and raised his eyebrows at me.

“Well, I need you to bring Lance in to have a DIabetic Assessment with one of the registered nurses. Then, once they have gathered the information we need, I’m going to refer you to a podiatrist who specialises in Diabetes complications.”

Those last two words.

I read them, I write them. Occasionally, I’ve even said them.

But no one has ever said them with such pathos.

I have also contacted his Diabetes Educator.

“What was his last A1C?” she asked.

“7.1” I replied.

“I’d say it’s a growth spurt, Kate. Seriously, kids don’t have neuropathy problems.”

“Really?” I asked hopefully.

“Well, when was he diagnosed? 3, 4 years ago?”

“It will be 6 years on the 1st November.”

“Oh. Listen, Charles is on duty today, can you please give him a call?”

(Charles is one of four endocrinologists who work exclusively with children. Unfortunately, we have never met Charles, and he is unaware of Lance’s history.)

“Peripheral Neuropathy only occurs in older people with poor control and high AIC’s. Oh, and with type 2 diabetes.”

My jaw fell in astonishment.

AN ENDOCRINOLOGIST MAKING FOUR BLATANT GENERALISATIONS IN VIRTUALLY ONE SENTENCE.

“I’d just like to point out that before Lance started on insulin infusion, his control was shocking, he had massive fluctuations due to growth hormones. He was having up to 7 injections a day to keep him in single digits, and it was really hard work to achieve that.”

“Nup. Doesn’t make any difference. He’s type 1.”

As much as I was desperate to believe him, I was angry that he was brushing aside my concerns, and his slap-happy approach to pinning peripheral neuropathy onto lazy, irresponsible adults with type 2 diabetes left me postively livid.

Our endocrinologist is in Vietnam on a 4 week holiday. He left the day before I called him.

Lance’s Aunt Kel is a sports scientist, who is currently completing a two year trial with a group of men and women in their sixties,all who have type 2 diabetes. She is excited to present her thesis which will reveal that each of the particpants blood sugar levels have overall improved dramatically as a result of strengthening muscles through weight training.

I spoke to Kel last night, and mentioned Lance’s symptoms.

“Oh my God.” she whispered.

“I KNOW!” I exclaimed, relieved that someone understood my concerns.

She immediately launched into exercise specialist mode and set Lance 100 toe lifts (quick lift up onto toes, and slow drop on the way down) a day. She encouraged plenty of foot movement, toe wiggles, trampoline, circling his feet, all in an attempt to improve circulation. I immediately felt so much relief from hearing advice that was positive and beneficial from a professional.

So, Lance has commenced his toe lifts, we have an appointment with Dr Congo tomorrow who will write Lance’s assessment and then contact the podiatrist for an appointment.

I have incorperated a 10 minute massage after Lance’s shower. I rub until I can feel warmth exuding from his feet , and it is providing him with a little relief.

There really is nothing more that I can do, except to try to remain positive.

I will give another update after the assessment and the appointment. Looking at this has made me remind myself that Diabetes is not just about insulin therapy. As a parent who is responsible for educating my son about how to take care of his condition, I acknowledge that’s its so important to remain quietly vigilant everyday. Just little things could make a mammoth difference to a complication-free adolescence. Now that we’ve passed the five year mark, we need to add some new specialists into our diabetes management program.

As much as I do worry, I am constantly amazed at Lance’s ability to accept what accomanpanies diabetes. Right now, his biggest worry is whether he’s getting a Lego truck for his birthday.

The Birthday Present. (Well, one of them. I'm hopeless.)

The Birthday Present. (Well, one of them. I'm hopeless.)

(It’s sitting up in the top of my cupboard wrapped between pillows and blankets. He looks at a Lego catalogue everyday, and studies intently the detail and pieces of this truck. I’ll have an 8 year old in 26 days, and he’s simply amazing. :))

 

Comments (6) »

To Lance Or Not To Lance..

Comments (1) »

Wheels Of Fortune.

It’s only just over three months away until the 6th annual  JDRF “Ride For A Cure” takes place.

The Hugely Successful "RIDE TO CURE DIABETES."

The Hugely Successful Ride For A Cure.

My good friend and fellow JDRF advocate/parent, Cathy Forbes and her amazing quadruplet of cyclists are hitting the roads for their third trek through the picturesque Barossa Valley In South Australia.

Cathy, her family and friends have one very special reason why the “Ride” is so incredibly important.

Cathy’s gorgeous daughter, Carrie has the double whammy-Type 1 Diabetes and Coeliac Disease.

The Forbes Family have made an incredible contribution over the years through fundraising, in fact this is their third year that they have rode their way that mile further to finding a cure.

Michael On The Road

Michael On The Road

In January, 2009, Carrie Forbes will have two very important family members, joined by two newbies to the team, who will be riding in her honour. Like any JDRF fundraising event, all donations are put directly into laboratories, research projects and trials, in a desperate attempt to find a cure for type 1 diabetes.

Proud Cathy With Her "Boys."

Proud Cathy With Her "Boys"

On behalf of a JDRF Family who have tirelessly worked and participated in so many fundraising events, I am asking www.whydidtheinsulindie.com readers to think of every child, (or remember when you were one) with this insidious condition. The loose change in your pocket will help to increase Cathy’s fundraising total.

                                                                   

To contribute in any small way to JDRF’s Ride For A Cure 2009, and support my friends, Cathy and Garry, and Lance’s friend (and major crush) Carrie, please click on the below link.

http://ride.jdrf.org.au/CatherineForbes/

  Thanks so much, everyone!

Leave a comment »

A Victorious Moment-Paying It Forward To Your Favourite Bloggers!

One thing I have learnt about type 1 diabetes is that just when you think your life is akin to an overgrown bunch of noxious weeds, if you look hard enough, smack bang amidst the jungle you can find the most incredible bunch of exotic blooms.

Today, I found a gorgeous flower that made me smile. In fact, I’m STILL smiling.

My friend Kez sent me an email, and told me that I had a surprise awaiting on his website. After a really horrid day, I was intrigued to investigate.

After scanning through his latest post, I soon found myself grinning, as I had become the proud recipient of the Superior Scribbler Award!

I Won This Award!

I Won This Award!

 

The award was originally created by Melissa over at The Scholastic Scribe. She initially awarded the prize to her five favourite bloggers, who then awarded their five faves, and so on.

My tres amazing hombre, Kez-author of Interpret This! has given me the ultimate privilege of sharing with the blogosphere that Why Did The Insulin Die is one of his favourite blogs! 

Kez writes an eye popping and lusciously addictive blog about everything between his passion for a fine automobile to his quirky, everyday life in Melbourne. Somewhere amongst all of that, you will discover that Kez also has Type 1 Diabetes. I often forget this, however, because he has the ability to just get on with the show. He showers the world with his sunny disposition, and he has a heart as huge as a drag queen’s headpiece. It hasn’t taken long at all for Kez to become someone that I dearly cherish as a friend. He is always looking out for Lance, and he has this amazing ability to make me feel so special. So, Kez, on behalf of the staff of www.whydidtheinsulindie.com (I actually DO have a wonderful team on board, I have my IT guru, my understudy, in case I’m stuck in a crisis or an emergency;he knows Lance and me well enough to take over, and of course, the star of the entire production, Lance,) THANK YOU SO MUCH, Kez, for selecting our little blog as one of your top 5, out of so many worthy and wonderful reads!

So, before I reveal my Top 5 bloggers, I am required to publish the rules of participating in heaping ice buckets full of praise and adoration upon the worthy winners.

 

Each Superior Scribbler must in turn pass The Award on to 5 most-deserving Bloggy Friends.

  • Each Superior Scribbler must link to the author & the name of the blog from whom he/she has received The Award.
  • Each Superior Scribbler must display The Award on his/her blog, and link to this post, which explains The Award.
  • Each Blogger who wins The Superior Scribbler Award must visit this postand add his/her name to the Mr. Linky List. That way, we’ll be able to keep up-to-date on everyone who receives This Prestigious Honor!
  • Each Superior Scribbler must post these rules on his/her blog.

Okay, now that the official part of the post is over, we now get down to the nitty gritty, as i announce the winners, carefully chosen by me, with some very important input from Lance.

In no particular order…

The first winner is Janek, author of The Engineer Also Muses. The name says it all..Janek is an Engineer, working tirelessly (in between msn conversations) to become Dr Janek, by obtaining his PhD. He muses about everything from humourous number plates to posting how many SMS messages he has exchanged with his beloved since they began dating approximately 4 months ago. On a more serious note, Janek is struggling to comprehend with a mysterious burden that affects his home, work and social life. He has an unexplained form of chronic pain, and despite being zapped, prodded and scanned, his medical team are unable to give him an actual reason for why his pain exists, and have therefore lumped his case with the title of nothing short of having a severe case of “Chronic Pain.” Janek manages to keep his head held high and hopes for the best-his wisdom and maturity is so advanced despite his almost 23 years. He is also a passionate advocate for many causes, and when he gets on his soapbox-be warned. Janek is only relatively new to the blogosphere, but has embraced entertaining his readers with gusto. Bravo, Janek.

Kerri‘s award winning blog, Six Until Me, chronicles her last 22 years that she has shared with Type 1 Diabetes. Determined to live life to the fullest, as well as being an amazing advocate for all people with The Big D, her posts leave you with food for thought, empower you to maintain superior health and a positive outlook despite having a pancreas void of insulin, and her ability to share her own terrifying experiences with hypoglycaemia and hyperglycaemia are absolutely heartwrenching. Kerri’s was the very first blog that I came across almost three years ago, I was so intrigued and excited to find an online account of survival that was written by a twenty-something, successful women from Rhode Island who knows her diabetes back to front and inside out. An absolute must read for anyone new to the Diabetes Online Community. I can guarantee that you will find yourself wanting your daily hit of Six Until Me. Oh! By the way, Kerri has managed to make her gorgeous cat an international star! 

Dan, author of My Life In The Slow Lane tells of a young man who has overcome some very dark phases through adolescence with chronic illnesses and depression. He has found the inner strength to live alone in Sydney and attend University, while enjoying an entertaining social life and seducing the reader with his incredible talents as a wordsmith. A inspiring story of how chronic illness could not hold this man back; he managed to emancipate himself from its clutches. Dan can fully identify with how living with Fibromyalgia, ME and Chronic Fatigue Syndrome are so misunderstood, very much like Type 1 Diabetes, often accompanied with the dreaded exclamation, “But you look so well!” A laugh-out-loud account of day-to-day life as a student, a patient, peppered with the excitement and challenges of a flourishing relationship. An inspiring and passionate read, with a twist of ascerbic wit and the odd, unapologetic outburst.

Bitten And Bound The Not So Pretty Side Of Hollywood speaks for itself. An all-girl lineup contribute to this blog (Missy, Meg and Andrea), giving delightfully humourous accounts of C Grade celebrities getting up to mischief.  I  recently enjoyed the Sarah Palin/Tina Fey SNL fiasco that the girls were able to present for our viewing pleasure. Bitten and Bound is your number one stop to find out about scandalous behaviour of the rich and famous, (yes, you, David Duchovny of the XXX Files.) An up-to-the-minute blog about Hollywood behaving badly, with fantastic pics to boot.

And the final spot belongs to..Shannon. This woman is possibly the U.S version of me. Her blog, Mom Wants A Cure tells of Shannon’s eldest child, Brendon, and his diagnosis of type 1 diabetes followed by his survival and the family’s acceptance of The Beast. Unlike me, Shannon has to devote herself to her husband, her two other chlldren and helping Brendon look after his Diabetes, as well as finding the odd ten minutes for herself. Both Lance and Bren were diagnosed at roughly the same time, and are pretty much the same age. Shannon’s blog is a hoot, she is unashamedly honest, (she enjoys colouring her posts with the odd expletive.) I often laugh out loud when I come across expletives used as adjectives or even the only word in a sentence. Dealing with hypos and high blood sugars year after year are bound to bring out some type of frustrated exclamation!) This woman also has the hugest heart and shows so much compassion to those in need of an ear. I relate to Shannon in so many ways, because we both are Mum’s/Mom’s who want nothing more than a cure. “Pure and Simple.” 

 Congratulations to these well-deserving recipients! It was definitely a difficult selection process. Each of these blogs provide me with comfort and much laughter.

Once again, big love and hugs to you, Kez. It was actually very difficult to keep you off my favourite five list!To all of the bloggers who have no reason to include a diabetes info and support blog on their blogroll, but have added us anyway…THANK YOU, TOO!! You are providing an invaluable service, by helping to educate your readers about type 1 diabetes. Better advertising than money can buy, I say! 🙂

 

 

Leave a comment »

Yes Or No.

Stolen from Dan.( My brother, Lance’s Uncle and my IT guru.)  I even stole his hunky pics.

 For more eye candy and a jolly good read, visit

 My Life in The Slow Lane.

SO…Here’s the game.

 Only two rules– and you MUST follow them:
1. You can only say Yes or No.
2. You aren’t allowed to explain anything unless someone asks you, so feel free to ask.

1. Taken a picture fully naked? — YES
2. Painted your room? — YES
3. Made out with a member of the same sex? — YES
4. Driven a car? — YES
5. Danced in front of your mirror? — YES
6. Have a crush? — YES
7. Been dumped? — YES
8. Stolen someone’s heart? — YES
9. Gotten in a car with people you just met? — YES
10. Been in a fist fight? — NO
11. Snuck out of your house? — NO
12. Had feelings for someone who didn’t have them back? — YES
13. Been arrested? — NO
14. Made out with a stranger? —YES
15. Left your house without telling your parents? — YES
16. Had a crush on your neighbour? — YES
17. Ditched school to do something more fun? — YES
18. Slept in a bed with a member of the opposite sex? — YES
19. Seen someone die? — YES
20. Been on a plane? — YES
21. Kissed a picture? — YES
22. Slept in until 3? — YES
23. Love someone or miss someone right now? — YES
24. Laid on your back and watched cloud shapes go by? — YES
25. Made a snow angel? — NO
26. Played dress up? — YES
27. Cheated while playing a game? — YES
28. Been lonely? — YES
29. Fallen asleep at work/school? — YES
30. Yelled at a friend? — YES
31. Felt an earthquake? — NO
32. Touched a snake? — YES
33. Ran a red light? — NO
34. Been suspended from school? — NO
35. Had detention? — YES
36. Been in a car accident? — YES
37. Hated the way you look? — YES
38. Witnessed a crime? — YES
39. Pole danced? — YES
40. Been lost? — YES
41. Been to the opposite side of the country? — NO
42. Felt like dying? — NO
43. Done something you told yourself you wouldn’t? — YES
44. Laughed until something you were drinking came out your nose? — YES
45. Caught a snowflake on your tongue? — NO
45. Sang in the shower? — YES
46. Made out in a park? —YES
47. Had a dream that you married someone? — YES
48. Glued your hand to something? — YES
49. Got your tongue stuck to a pole? — NO
50. Ever gone to school partially naked? — YES
51. Been a cheerleader? — YES
52. Sat on a roof top? — YES
53. Didn’t take a shower for a week? — NO
54. Too scared to watch scary movies alone? — YES
55. Played chicken? — NO
56. Been pushed into a pool/lake with all your clothes on? — NO
57. Been told you’re hot by a complete stranger? — YES
58. Been easily amused? — YES
59. Mooned/flashed someone? — YES
60. Cheated on a test? — NO
61. Forgotten someone’s name? — YES
62. Slept naked? — YES
63. Gone skinny dipping? — YES
64. Blacked out from drinking? — YES
65. Played a prank on someone? — YES
66. Gone to a late night movie? — YES
67. Looked at your reflection as you walked past a window? — YES
68. Failed a class? — NO
69. Choked on something you’re not supposed to eat? — NO
70. Played an instrument for more than 10 hours? — NO
71. Cheated on a girl/boyfriend? — NO
72. Thrown strange objects? — YES
73. Felt like killing someone? — YES
74. Felt like running away? — YES
75. Have you ever ran away? — NO
76. Made a parent cry? — YES
77. Cried over someone? — YES
78. Had sex more than 3 times in one day? — YES
79. Dated someone more than once? — YES
80. Had/Have a dog? — YES
81. Own an instrument? — YES
82. Been in a band/orchestra? — YES
83. Drank 25 sodas in a day? — NO
84. Broken a CD? — YES
85. Shot a gun? — NO
86. Had feelings for one of your best/good friends? — YES

                                                                               Yes:62   No:24

 

 

Comments (1) »

Neuropathic Night WatchChick.

I have had a hiatus from writing for a while.

Sigh.

Lance has some very disturbing symptoms, which I feel could be linked to peripheral neuropathy.

I know a seven  year old who has just experienced a hellish winter, due to numbness and terribly cold and  painful hands and feet.

For the past week, he has taken up to three hours at night to actually fall asleep, because his “feet are hot, they’re burning, from 1-10, it’s so horrible it’s a 10”. Massage, ibuprofen gives minimal relief. He finally falls asleep, but only out of sheer exhaustion.

His sixth year anniversary since diagnosis is ten days away.

I cringe as I think of all the wild fluctuations in his blood sugar levels when he was a baby/toddler.

I have an appointment for him tomorrow with his GP. I will be requesting further tests, as this is too real to be just a coincidence.

(I foolishly googled ‘type 1 diabetes hot feet night’ and landed on a site that made my heart sink.)

When I am massaging Lance’s feet, they are cool to touch. Tonight he had his feet up parallel to the fan, in an attempt to get some relief. His feet are spotless-he has no cuts or scratches. However, he frequently has pins and needles, at least once a day.

Some people knit or watch tv in their down time. I inspect every part of my son’s feet.

I am REALLY hoping for the best, but there’s a part of me that just “knows” that my boy is in trouble.

 

In the meantime, could you all keep him in your thoughts and prayers?

He’s 8 years old next month.

Eight..wow. It just hit me that he is still so young, yet he has been through SO much. He never complains, he remains upbeat and positive about having type 1 diabetes and he is so proud of his pump.

Anyway, I guess I just had to vent my fears.

I’ll provide updates as they unfold regarding his appointment tomorrow.

Comments (7) »

Suffer The Little Children…

I’m a little annoyed.

Maybe it’s all the shenanigans regarding governments and elections of recent times…It’s just made me recall all of the promises and deals that were made relating to an Insulin Pump Scheme that would be applicable for children with IDDM up to 18 years of age before the 2007 election.  

I was first contacted by JDRF Head Office last year, before our Federal Election. A small group of parents and I were asked to contact Mr Howard. Others were pleading with our Members of Parliament to take into consideration how many children with diabetes don’t have insulin pumps, and how desperately they needed them.

On International Diabetes Day,2007, Mr Howard historically announced that, if re-elected, he would provide $22 million to JDRF, to ensure that many children, and especially the ones who truly needed a pump, got one.

Despite our inital frenzy, at this stage, Mr Howard was lagging in the polls, so Kevin Rudd and team were our next target.

We rang Labor party hotlines, we wrote to Kevin personally, we even joined his Facebook Page. JDRF Youth Ambassadors followed him around and spoke of their need for an insulin pump program to combat their ailing health.

He knew that this was something that advocates and JDRF expected him to at least match, or maybe supercede the amount promised by Mister Howard.

So, Kevin Rudd became our new Prime Minister, and we said goodbye to our 22 million dollar promise.

Nothing was mentioned about Health, nor Childhood Diabetes in his victory speeches. I was silently worried.

He made grandiose promises to amend the public hospital debacles, and even establish doctor’s surgeries replaced by state-of-the-art medical centres, where you could see your doctor, as well as have all of your blood work, x rays, physio and dentistry taken care of in the same complex.

Australia nodded and agreed wholeheartedly. This was a man who cared for the little Aussie battlers.

However, in that election promise, there was no mention of a insulin pump grant.

In the meantime, Lance’s health took a turn for the worse. His endocrinologist spoke to me about the possiblity of getting an insulin pump.  When I bought up the possibility of obtaining one through the Insulin Pump Grant, he raised his eyebrows, stopped writing frantically, and shook his head. Hot, angry tears spilt down my face.

I began looking around and finally settled on a Medtronic pump.

The rep, Louise, and I gained a fantastic rapport. 

.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      totally  I really loved the way she communicated with me and understood how desperately a pump would be beneficial for Lance. I mentioned the insulin pump grant to her. She grimaced, and said something along the lines of, “If it does happen, it won’t be for years, and it wouldn’t be anywhere near the amount promised by Howard.” I sighed, disheartened, and continued listening.

 I put DAYS into writing letters to different influential people-some responded, but it all depended on the upcoming election. As soon as we knew that the Labor party were victorious, I began furiously writing to various Health Ministers, Members of Parliament, and King Pin himself, without one reply.

Suffer the little children..."

Suffer the little children...

Just before our annual budget was released in May, our very good friend, Gareth Eldershaw, (Gareth completed an interview for www.whydidtheinsulindie.com earlier this year), wrote to Arch Bevis,Federal Member for the Seat of Brisbane.

This is what Arch wrote in his comments regarding the budget results.

Firstly, he made reference to the letter that Gareth had written to him, complete with Jelly Baby Lapel Pin. (Budget night happens to coincide with Jelly Baby Month, so we make it a point that each MP is sent a pin and request that they wear it on their lapel on the night that has the Nation at a standstill.)

“May is a special month for JDRF as we try to make the community more aware of Type 1. As you know the jelly baby is a sort of motto that represents a vital aid to help us recover from a “hypo” when our glucose levels are too low. There’s a little blue guy in the envelope that I’d like to give you and ask you to wear in May and especially on Budget night.”

I can tell Gareth that I am wearing his little blue guy on my lapel, as I did last night during the budget. Gareth went on..

” We talked about the grant to fund the reimbursement of insulin pumps for kids under the age of 18. 3000 pumps for all these kids (over a 5-year period) would cost $35m. It’s a lot of money I know, but you know how much it will save the government in the future? Of course it will make life a bit more bearable (and safe too) if kids can use insulin pumps.”

I was very pleased to have been able to ring Gareth up today and say that in last night’s budget we made a step in that direction. I do not pretend that we have gone as far as we need to. I want to see the opportunity to benefit from an insulin pump—and not everybody with diabetes is suited to an insulin pump—be made available to all. But I do applaud the Minister for Health and Ageing, Nicola Roxon, for her efforts in recent times in ensuring that the budget includes a provision that will see about 700 young Australians gain access to an insulin pump. I look forward to continuing to work inside government now rather than from the opposition benches to try to have that program extended.

The grand result?? JDRF were given $5.5 million, to be dispensed over three years, to provide insulin pumps for 700 children.

After much planning and deliberating, JDRF will begin accepting applications for contributions towards the purchase of an insulin pump. It will be based on a financial means test, and the most that can be received per child is $2500. Families without health insurance can begin applying for insulin pumps for their children in November.

So, with the average insulin pump costing $6000, (notice, I say average ), and with approximately 1.7 million dollars provided each year, it won’t take long before all of the money is dispensed. If you are a suitable candidate for the $2500, what happens then? How do you get the rest of the money? Fundraising is about the only real option,and we all know how difficult that is.

I’m really not trying to look a gift horse in the mouth.

I’m so grateful that we were acknowledged at all, the heart and soul of some 50 parents went into sharing their children’s private stories regarding life without an insulin pump. I’m sure PLENTY of other charities tried their hardest to get a financial boost without succeeding, so I really don’t want to appear like I’m complaining or ungrateful.

I guess it just smarts a little that we could have had 22 million dollars.

It hurts to think that some families will qualify for the $2500, but will be totally stuck when it comes to raising the rest. Not to mention those who receive $750-I mean, what happens there?

  • Knowing JDRF Australia, they may have some amazing fund raising venture up their sleeve, but in all truthfulness, does it leave families any better off than before this money was offered? Personally, if I hadn’t have paid for Lance’s pump outright, and I knew that there was NO way I could afford to pay for the outstanding amount, I think (and only if Lance’s health was in excellent shape), that I would forfeit the opportunity. JDRF staff are going to have to make some really difficult decisions without being biased to families they know well and adore.

 Vote for whomever will give you a better Health Care System, America!

Leave a comment »

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.)

Comments (1) »

Three Little Questions… One Big Problem… You Can Help!

I’ve invested quite some time researching and learning about a medical condition associated with Type 1 Diabetes.

I realised that I need your help to complete an interview and report I will be publishing in the semi-immediate future.

 I am asking three questions, and, in an attempt to create awareness AND provide help and hope for the sufferers of this condition, it would be of much value, and deeply appreciated, if you could please leave an answer to one, two or all three questions. 🙂

1. Have you ever heard of, or read the term, “Diabulimia?”

Now..that was easy! You can answer yes or no, or maybe you might like to elaborate. ( Yes/No is fine, though. )

If you didn’t know the answer to Question 1, you may stop HERE.

2. What age group/sex would you expect the majority of people with Diabulimia to fall under?

Just a M for Male or a F for Female and some numbers relating to age group will be dandy. 🙂

3. Can you give three adjectives or phrases to describe what the terms, “Diabulimia” or “Diabulimic” mean to you ?

That’s it!

If you do decide to help me with my project, I would be so grateful for just a minute or two of your time with some answers.

And, if you are now curious as to what I’m up to..watch this space.

Any answers submitted will be strictly confidentalno answers will be approved for publishing on this blog, or will any names/titles used in the report. These questions are for statistical purposes only

I am the only person that will see the responses.

Thank you so much for your help and valuable answers!!!

 

Leave a comment »

Thank You, Squidoo!!

Ten days ahead of schedule, Squidoo have already fulfilled their promise of an $80 000 cash giveaway to many worthy organisations! 

Five percent of the overall votes went to the Juvenile Diabetes Research Foundation, with each vote earning a $2 donation from the amazing team at Squidoo.

Considering that the voting closed so early, approximately $4250 is certainly a tremendous effort!!

(Exact amounts to be donated will be published on the Squidoo website when the final counting is completed.)

Good Job, Everybody!!!

Good Job, Everybody!!!

Considering that Lance and I sell jellybabies each year for $2 per unit, I can assure you that achieving anywhere close to a four digit number in a two week period is a mammoth accomplishment.

Just through word of mouth, an email here, a post-on-a-blog there…..WE ALL DID JDRF PROUD.

Oh, by the way, you CAN continue voting over at Squidoo if you are at all interested in how much we could have raised by 15 October, (for bragging rights only.)

On behalf of JDRF (Australia), THANK YOU SO MUCH, Squidoo, for your incredibly kind offer, that touched so many different charities and in some way, big or small, made a difference.

(Squidoo have always been exceptional supporters to Type 1 Diabetes by providing much needed funding for cutting edge research.) 

 To all who voted, you already know that you are smokin’ hot!

Leave a comment »