VIDEO: IVF: Lord Winston on private fertility treatment costs

I've just watched this video from the BBC:



http://www.bbc.co.uk/news/uk-politics-13795110

It's Lord Robert Winston talking about the "massive profiteering" by private fertility clinics in the UK.

I see many parallels with what is going on in the UK with the NZ system, and if what Winston says is true about the amount of "markup" the private clinics are putting on the cost of treatments coupled with the fact that the (UK) NHS often relies on the private clinics' costings (rather than doing their own costings) to set prices for public treatment, then that could also be true for NZ.

It would be VERY interesting for NZ government/politicians/tax payers-at-large to know three things:
1) How much fertility treatment costs
2) How many people are denied (timely) treatment
3) How much the NZ tax payer ends up paying to fund the treatments it DOES fund, since they are pretty much being charged private-treatment costs. (i.e. not "at cost" procedures, but rather, procedures with some form of markup for profit)
4) How many more people could be funded per year in NZ if the NZ tax payer was only charged for funded procedures at COST price, not private prices.

Gosh, it would be good to get some common sense here.

In other news, I'm studying a paper on cultural contexts of learning for my Diploma in Tertiary  Teaching. I missed the first class where the other students were asked for homework to bring in an object which represented them / their culture / part of their culture.

People brought along favourite songs, sculptures, photos, foods, tools etc. I missed that first class, so I had not brought anything. My turn came round and I scrabbled in my handbag. Of course! I pulled out my test kit and log book (yup, still use a paper one).

And so proceeded a very cool, very impromptu, and very blow-the-rest-of-them-out-of-the-water talk about type 1 diabetes, how it affects me, and how I use the test kit. I even did a demonstration! (Made sure to ask if anyone was squeamish about blood first). Everyone was a bit stunned that I could talk so passionately like that, but they asked some very interesting questions. We discussed the "Diabetes Police", the difference between Type 1 and Type 2 and how they're different diseases, how it feels to go low, whether finger-pricking hurts, how I am starting to advocate for type 1 diabetics, what I could offer as a teacher to diabetic students on campus, what insulin pumps are, and a bit about the research and clinical trials of Professor Bob Elliot of LCT Global.

It was nice.

And when the next student apologised because her object was a sweet flan, and she was assuming I couldn't have any! Not true! My Mum always said that I can eat pretty much anything, as long as I'm prepared to inject enough for it. I nearly ripped the spoon out of her hand to get a taste! haha. NEVER come between me and a dessert!

If you are Type 1 Diabetic I urge you to watch this documentary...

...and watch it quick! You only have 4 days before it becomes unavailable online.

http://tvnz.co.nz/xeno-a-cure-for-diabetes/video-4261364

This show screened on New Zealand TV last Sunday, and you can watch it by the magic of the interwebs at the link above.

It's all about the work of Professor Bob Elliot, and the research his company LCT Global is doing into Xeno-transplantation of (pig) islet-cells into humans.

Short summary for you who are not planning to watch the video:

• The show follows one clinical trial patient as she goes through the work up and procedure.
• Apart from the sensationalist made-for-TV title of the documentary, this is not actually being promoted as a cure, rather, it's hoped that the encapsulated islet cells will work to remove the roller-coaster style fluctuations, and reduce hypo-unawareness. So far, so good in the trials anyway!
• I personally thought that some parts of the "living with diabetes" spiel had been ramped up a bit, but then, the candidate has many similarities with my own story. I will leave you to make up your own mind.
• LCT Global has just started more clinical trials in Argentina, to determine the best dosage. Seems like they have got the big OK on the safety issue.
• You can sign up for their email newsletter, which gives updates on where this technology is at, and how soon before it gets to "market".
• That's another thing to consider... if this treatment does become available, how expensive will it be???
• I want! Gimme gimme gimme!

In other, more local news, it's the end of semester one. I have been working like a crazy thing. I had a 9-day migraine with aura (not much pain though). I have recently developed moderately bad shin splints pain in my left shin (what the hell! There is nothing in a SHIN to go wrong, is there?? Sigh), and the RSI/OOS/Overuse Syndrome in my right wrist has reared it's ugly head, only this time in my left wrist. Typing this is hurting. Wah.

Work is busy, with grading, teaching extra classes, and preparing to move office in the next 3 weeks. We are getting a whole bright new shiny art facility built - can't wait to move. New digs have: duh-duh-daaaaa! Air con!!! Yay! :)

My freelance work is going nuts. I'm getting website projects coming out of my ears. This week alone I've encountered 5+ websites that need buildin' and have quoted on two of them. When I will actually find time to make them is still a question I haven't solved.

In sad news, my father-in-law has been admitted to hospital today with bad anaemia. He is 82 (I think) and has taken a hammering with health problems in the years I've known him. He's such a sweetie and he really doesn't deserve this. Please send your good thought and prayers for him to recover.

So.... go and watch that documentary. Now! (Sorry to shout, but it's like, real important eh.) And share it with your mates. Cool.

So proud! :D

This is my step-daughter Olivia singing with her two friends as part of the "Busting to Busk" talent competition in the Park. The song is I'm Yours by Jason Maraz.

Every year the park is lit up with thousands of colourful lights, and there are always plenty of things to see and do. This talent comp was for 13 - 18 year olds. Olivia is 13!!! Look at her go! [She's the blond standing on the right, with guitar. Sorry about bad video quality :(  ]



The girls chose the song that afternoon, so about 2 hours rehearsal and they're all ready to perform in front of 500 people. She's getting really confident now, and her pitch and timing are great, shame about the "interesting" drumming by her mate! haha

They won an award for Best Audience Participation. So cute! :D

A trip to the emergency room...

But not for me this time! Unfortunately, while fishing off the breakwater at the port last night, my husband got a fish on the line (that's ok, we like fish!), but the fish let go and the line pinged back and all the hooks and sinkers hit him in the head!

I was sitting on a rock nearby, taking photos, and I heard him yell. He turned around and there was blood pouring down his face. I think there may have been some swears! I rushed over and I could see a huge hook caught in his temple, and fishing line wrapped all about his head. I got the big hook out (7cm long) as it was only a couple of mm below the surface of the skin. I had to use a whopping great fishing knife to cut all the line away, and it must have looked like I was threatening him from a distance! :P

But there was a second hook, smaller, only about 4cm long, but lodged quite deeply into his left eyebrow. :(

We packed up and drove the short distance home, and checked it out under better light. After deciding he couldn't remove it himself (and I sure as heck wasn't game!) we made the 1min trip to the hospital. Literally, it would only take us 5 mins to walk there we live so close!

And then we waited. For 3 HOURS!!! Sure, he wasn't in much pain, but he was going into a bit of shock, and he was quite a mess with blood all over his face. I had made sure to take a good stash of food and juice with me as I knew the wait could be a while.

And, oh yeah, had a low of 3.0mmol/L in the middle of all this! :S There was a discussion about who should drive to the hospital, not me, cos I'm low, and not him, as he's got blood on his face and may be in shock... he drove. I figure he had better control of all his faculties at that point!

All the staff were really kind and helpful, and they apologised for the long wait; there was a car crash with several patients which arrived just before us. They even let Hubby in to get cups of tea and coffee. Oh, and the nurses were all quite curious to see the man with the hook in his eye!

When we finally got let in to the ED, I asked if I could video the "procedure" and the lovely doc said yes. Here 'tis. Please don't watch if you're at all squeamish!

Part 1:


And part 2:


Funny, I was just thinking the other day that I hadn't been to A+E for a while. Looked like I jinxed it! haha :P

How was your weekend?

An early Christmas present

...or My Cat is a Reindeer!

Chomsky the Cat, fond of cornflakes and sparrows.

Well work has finished for me this year, and I've been stuck into late spring-cleaning the house and Christmas shopping. Oh my! Town is hectic! But I have finally finished, just the groceries to go.

And now for something wonderful. Yes, even more wonderful than my cat doing his reindeer impression. My endo did as promised, and wrote a letter:

A letter from my Endo, cc'd to the fertility clinic!

Typed version:

Dear Colleagues [Fertility Clinic, GP, Diabetes Nurse Educator, Patient],


I saw [Kaitake] for her brittle Type I diabetes. Since the last time I saw her she has changed jobs and initially work has been a little more unpredictable. She is trying to get very good control because she is wanting a pregnancy. Today her A1c is 6.6% which is the lowest she has ever had and is actually lower than it needs to be. She is having still unexplainable variation but no blood sugars below 3 which is a vast improvement for her. She is still going quite high after lunch but seems to be doing much better with carbohydrate counting partly because she has got a calculator to calculate the exact dose of insulin.


There is just an incredible story that she has been turned down for IVF - for which the IVF provider acknowledges they would otherwise be the ideal candidates. However, they haven't "waited long enough" - they have had unprotected intercourse for six years but the mandatory waiting rules only start when you have your first medical appointment with IVF provider. We are going to search her diabetes records to see if it was ever written down. There is also a delay because her husband had a vasectomy in his previous relationship. A vasectomy has got to be considered a good thing for society and yet now the couple is being punished for having done that. All of this is just frighteningly unacceptable and ignores the biology, sociology, psychology of IVF. I suggested that she go see her Member of Parliament. The other thing that is illogical and dangerous about this apparently official rule of having to wait longer for IVF treatment is that there will be an increased risk of morbidity and mortality for [Kaitake] and it will increase [the risk of] Down's syndrome in her child. Both of which are just idiotic for society and the patient.


The patient is going to call me if she needs some help reviewing the arguments when she goes to see her member of Parliament and I will call [the Fertility Clinic] myself to see who has written these stupid rules.


Yours sincerely,
[Consultant Endocrinologist]

So that is pretty amazing to have some help, and to know that we're not alone in thinking this whole situation is rather insane.

I am in the process of composing a letter to my Member of Parliament. This is rather a hard thing to do, I'm finding, as I have to explain our situation carefully and fully - yet it is very uncomfortable to have to tell a non-medical person all this stuff. It's rather a curious and embarrassing thing to have to plead with your MP so you can reproduce! But hey, if it works out, it might get us treatment, and save some other couple from going through the wringer. I just hope he can help, I'm just not sure how??

In other good news, I no longer have 2 and a half months unemployment facing me. Yay! I was only on a fixed term teaching contract, and my permanent contract doesn't start until next year (Feb!). My boss wheedled another week out of the HR department, and then the good folks in the staff advisory department have taken me on for 3 weeks as an e-learning consultant and video editor. Cool! I will be the only one in the art department taking only 3 weeks holiday (most of them are taking more like 10 - 12 weeks!!) but I'm fine with that.

What I'm not fine with is the weather. It's only 3 days until Christmas, and the drought we were having has turned into a torrential downpour of the highest order! Seriously, the humidity is sticky and horrid, and everything seems wet. The biscuits (cookies to you folks in the US) are soft, the Christmas gift wrap is damp, my hair has gone mental, and the garden needs weeding - desperately!

Here is a tour of my back garden, taken between rain showers:

Watching TV gets interesting

One of the banks has just started a new advertising campaign. It uses a really poignant song, and it just gets me every time it plays:

Sorry, you can't click it!

I couldn't save the video off their website, so to hear the song you'll have to watch it here:  http://www.asb.co.nz/CreatingFutures/ivf/

I have to say, I had already been thinking about how we could maybe look at affording IVF privately. So far, I've not come up with many bright ideas, however, I've not been feeling too bad since I've been soooo busy at work - end of year and I've been snowed under with marking and stuff. I guess everything just got too hard for me when we got told we couldn't get public funding. I wouldn't say that my dream has died, far from it, but I've found a way (don't ask me how!) to cope and push the thoughts from my mind for a good chunk of my day.

Thoughts like,

• Will I ever be a Grandma?
• Who will I pass all my stuffed toys to?
• Will I ever make my sister into an Aunty (she'd make the BEST aunty!)
• Will I get to see if our kid/s have dark hair?
• How will I fill up my years if I don't start a family?
• What will be the meaning of my life if I can't have kids with the man I love?
• How will I cope long term, once the "clock starts ticking"?
• How long can we wait, since Hubby is not a spring chicken?
• Will I ever get to decorate a nursery and buy oh-too-cute baby clothes?
• Will I get to experience all the nervousness and fear that comes with pregnancy?
• I already know that I will be a good Mum, and that Hubby is a good Dad, but will we get to have kids together?
• Will I ever get to agonise over choosing a kindergarten/primary school/high school/university??
• How will I choose a name for my baby?
• Am I being stupid wanting something when the world seems to be telling me NO NO NOOO again and again?
• Am I willing to go into debt to have only one chance at this? etc etc   ....sigh   :S

Ha! Who am I kidding! Those thoughts are still there, just perhaps not resting on the surface like a few months back :P

The sucky thing is there is ZERO information on their website about what they are actually offering - I'm assuming it's a personal loan. Something I want to avoid, since if I did get pregnant on the first pop (ok, yes, I am assuming a lot.... just let me think myself into a knot for a moment please :P  ) I would be definitely taking time off work, so would not be able to "administer" a loan of that scale. I'm very nearly debt free from uni, so I don't particularly relish the thought of plunging back into the red. Yeah, so the nice marketing folks at the bank have no idea, as they want, no, demand their potential customers to come in to discuss IVF in the bank (like, no freaking way!!) or phone them (a stranger on the phone, you've got to be kidding), or even, yup, you guessed it - facebook. What? And let all my IRL folks know the haps? Nup, no sale, happy yellow bank.

In happier news, Christmas is coming!! :D

We are hosting Christmas lunch at our place, and as it will be high-summer here in NZ, a classic backyard bbq is in order. Plus, we will have healthy selection of gluten free dishes and (weather permitting) fresh garden peas, new potatoes and tomatoes! Oh I hope the sky stays sunny!

I want to revamp the back garden. I've already planted a new rose garden with beautiful old roses such as:

Albertine

Avalanche

Blackberry Nip

Dublin Bay

Falstaff

Heritage

Jubilee Celebration

Othello

And we are thinking, maybe, of getting chickens. What do you think? Any of you have experience keeping pet chickens? Do you think it's a good idea? Fresh hen eggs....mmmm :)

My diabetes artwork - installation complete! Hooray!

Five posters, two ladders, and four lows later, I'm done! Yay! What a day! :D

Here are the posters, see which words you recognise:

DOC: the diabetes online community, a wonderful bunch of bloggers who encourage and support each other :)

SUM: six until me, the first diabetes blog I read, and the one that inspired me to create my own blog.

BASAL: refers to insulin basal rates, a word that diabetes folk will understand, but other people might not necessarily.

SWAG: stupid wild-arsed guess, for when a diabetic takes an unscientific amount of insulin, rather than working it out.

BOLUS: the insulin a diabetic takes with each meal, or to correct a high blood sugar. Another word that non-diabetics may be puzzled by.

By now you are probably scratching your head, wondering why on earth I've made these posters. Well dear friends, I will tell you :) I'm a tertiary tutor at the local college, and I work in the art department teaching typography, design, web, and digital media. It's good fun. Once a year the art tutors get together and put on a little exhibition to show the students and the local community what we've been up to.

At first I didn't know what to make my artwork about, but then I thought what better subject than diabetes? But how to portray it in a way which is both useful to diabetics (ie, improves knowlege and understanding of T1 diabetes) and sympathetic to diabetics (ie, not crass or gross, using obvious imagery like needles, blood, or the horrors that get repeated in the media about diabetes).

This artwork, although not large, is my first foray into making diabetes related art. And so far it's getting a good reception by those who've seen it. The exhibition opens on Tuesday and I can't wait!

It's made of ink on watercolour paper, on cotton printed fabric. Each piece is hung separately from a bamboo pole, perpendicular to the wall:

The first thing the viewer will see when they step into the gallery.

The five posters are hung perpendicular to the wall, to obscure the straight view onto the images.

I love the shadows created by the pieces, and how they become a floating sculpture, rather than just flat pictures on a wall.

Kitch floral prints were chosen for the backing, to tie the pieces into my home.

The viewer will have to come up really close and stick their head in the 40cm gap between each poster to view them properly.  I like that!

The posters depict words created by, specific to, or repurposed by the diabetes community. The underlying themes in this work include diabetes, community, language, and the interplay between secret and public. I chose this visual style to work as a visual pun on the idea of embroidery samplers, sometimes called needlepoint samplers. I've turned my posters into graphic samplers dealing with words related to diabetes, which is synonymous with needles. :)

Here's a short timelapse video of the making-of one of the posters:

And here's some shots from the installation of the work:

Tying tiny knots in fishing nylon line, to hang each poster.

The day was like a aerobic step-class from hell. I went up and down the ladder soooo many times! Ah, we must suffer for out art! :P

Final touches, straightening and checking the pieces before tidying up the room and setting the lighting.

It's been a mad day, with a crazy rush to get everything done and put together. A couple of lows interrupted my day, and I couldn't get above 5.2mmol/L until about 6pm. Oh, they've all caught up with me now though, I'm 17.2! Bah! :P

Roll on Saturday! :D

It's the little things

So, I've been a bit slack this week. My poor blog got a bit neglected, but I hope you will all forgive me with this post!

I went to see my dietician on Thursday. It was fantastic. Absolutely, I couldn't have asked for better. She understands.

She looked over my log book, which is jam-packed with my tiny scribblings, and assumed that I was on a pump due to the sheer amount of information I collect. And how often I test. And how I'm trying to get my carb counting down pat. I took that as a Good Thing, since she followed up by saying I was doing all that was possible without a pump! Finally, can I get a hell-yeeah! :D

Looking over the book, she was able to spot some wonky high numbers in the past week and a half. I explained that I couldn't explain them, so she explained that in each instance they were caused by me having a meal with high fat content. This meant that I would give my insulin, get a low cos the food hadn't "kicked in" soon enough, and then go high about 2 - 4 hrs later when the fatty meal got digested, by which time there was no Humalog left in my system. What a great explanation! Actually helpful! :D She was able to sort out what ALL of my wonky numbers were caused by.

The other reason was when my carb counts were a bit off, and this would always be caused by eating a meal that I didn't cook - restaurants, bakeries, hubby's cooking etc. Yummy but unpredictable. :P

I feel so empowered to know these two little piece of information. It's like everything has just slotted into place since seeing her. Here is a day of test results from

BEFORE: 12.6, 15.4, 12.1, 8.6, 2.5, 16.3, 15.5, 11.7

OK so that day was nothing special, a couple of highs and only one low. But look where I'm at now!

AFTER: 5.4, 9.0, 6.7, 6.6, 8.2, 5.4, 6.6, 6.1, 6.3 - this is today :D So steady, nothing above 9.0, no hypos, no lows. Wahoo!

At the end of the appointment, she enquired about my next visit to see my nurse educator, and then she offered to share our next appointment so I get to see both of them at once! I love getting my docs in the same room together. Especially when one of them seems to understand me so well, and the other sometimes seems to mistrust my ability to a) carb count or b) dose insulin correctly. For the record, I think I do rather well, considering I've never actually been formally taught either topic. :P

Meeting with my dietician has just proved that a well trained sympathetic eye can spot issues that need refining. I finally feel like I'm getting a handle on this. I mean, honestly, I haven't had a day as stable as today in years. I feel great. :) It's the little things that make me happy. See also:

In other news, you may not be aware but I am a photographer. Or at least I'm trying to be. I've joined up with my local camera club, and got myself a shiny piece of camera apparatus. I entered a competition "people, portraits, stories", and won an honours with this image of my gorgeous little sister:

So that's my happy post for this week :) It's a long weekend here, which makes me even happier!

Watching an IVF show with the family

It was really weird watching this: http://tvnz.co.nz/sunday-news/jay-and-dom-s-ivf-battle-3568371/video with my Hubby and 3 step kids.

At first I was sitting there in my armchair, a bit nervous and shaky, cos I didn't know how they would react. My eldest stepson had an idea of why we wanted to watch it, but the two younger ones were just confused as we were missing a new episode of The Simpsons! :P

But then, when the show got to the part where they were showing Jay Jay getting brave and injecting herself with hormones, everyone laughed when I said "Oh come ON!". (As a diabetic, I find it really curious watching non-diabetics trying to inject themselves :P )

Hubby and I thought we might broach the subject with the two littlies, but they were pretty tired, it's a school night, and it just didn't feel right to tell them something like that when they go "home" to their Mum tomorrow.

Overall I feel really good :) Had a great day and learned quite a lot from watching the show. Thanks to Jay Jay and Dom for sharing their journey with us.

If you're in NZ and you have a telly...

... and you're interested in IVF, then checkout the Sunday show, 7.30pm. It has an article about Jay Jay and Dom's journey through IVF. I will be watching, and my sixth sense tells me my parents will be too!

Diabetes police

Haha this is awesome, I'm sure you'll love it...enjoy!



I found it here: http://loldiabetes.wordpress.com

Turns out Siah Sausage has her own blog! Miaow!

Diabetes snapshots

For Diabetes Blog Week Karen set us the subject today of "Diabetes Snapshots". I haven't taken any diabetes photos, so instead I chose a video :D Enjoy!

Having diabetes is a little like "whack a kitty"...



Forever correcting high or low blood sugars! Just not quite as cute :P