Kaitake

Visit to see an HDC advocate

2011-11-01T01:21:00.000-07:00

During the term break, I called the customer service line for the local District Health Board to see if they could help. The nice guy there directed me back to the Health and Disability Advocacy service, which made sense. Although I'd already been there several months ago - and was advised that the HDC couldn't actually help in my case.

Well, I took the customer service rep's advice anyway, and emailed the HDC again for advice. The local advocate suggested I come in for a meeting with her. I wrote a "summary" (read: 9 pages) of our story, and off I went.

Well she was lovely. We spoke for over an hour and a half!

Turns out that I have 3 basic options:

Write letters to each of the health care providers who have given me/us bad service throughout this process.
Send my story to the Health and Disability Commissioner himself.
Do nothing.

By default, "doing nothing" is what we're already doing - just waiting out our time.

Because it won't take me much more work to write a cover letter and send my story off to the Commissioner, I think I will do that. I honestly don't expect it to have any impact on our case. It will probably take up to 8 weeks for a response to come back, and then he will have to make a decision on what direction our case should take. The Commissioner probably can't reduce our "penalty time" and even if he could, by the time the paper work is waded through, we will most likely be only our 18 month time of the waiting list anyway.

I'm fine with waiting lists, but not with illogical pseudo waiting lists. They suck.

The other option is to write letters to each of the providers concerned, telling them that their service is the pits and to pull up their socks. Again, I couldn't expect more than an apology letter from each of them, and at this stage I don't care for a bunch of useless apology letters.

I want to look forwards, not backwards. And that is a massively different way of looking at our situation, for me anyway.

Right now you're thinking "so what's the point of writing off to the Commissioner then?" Well, he has the power to review systemic problems and suggest changes. And that's what I really want. Well, that's what I want next to having our waiting time wiped. If the discrimination could be removed from the system then that would be incredibly positive. At this stage, that's all I can hope for, as there is nowhere else to turn to. I have literally tried all my options after this letter.

The good news is, once we finish waiting out 4.5 years (penalty time + waiting list) we will then be able to access fertility treatment.

It's just such a long way off.

A little bit of awesome HbA1c-ness

2011-10-16T20:59:00.000-07:00

I know I know, no posts for ages and then 2 in one day :P

But look at this!

Screenshot of TuAnalyze data graph measuring my HbA1c results over time.

I am holding steady on HbA1c result of 6.5% Yay! :)

(that's a 48 mmol/mol in the new numbers)

And now I will document how I got there. No it wasn't anything strenuous or taxing, but it was consistent.

I kept looking for the best way to use the data from my blood tests. Knowledge is power, after all.

That's it.

I figured, that since I test so many times each day, and record each and every one, plus what I eat, that there must be a way to use the data more effectively. Like, perhaps in a way that I could see long term trends happening, or find patterns.

My Endo and Diabetes Health Nurse are always looking for patterns, and I can never see them.

I used to use a paper logbook:

My old paper log book. Each horizontal row = 1 day. Note the classy blood smear top right.

Then moved on to using that together with the iPhone App Insulin Calculator to work out my insulin dosages more accurately. This really made a great change, and if you look at the TuAnalyze graph above, it is what I credit with the drop from 8.1 to 6.7.

More recently - like in the last 3 months or so - I have added another App built by the same folks, called simply Diabetes Diary. The great thing is that these two Apps link together, so I don't have to enter data twice.

It gives me weekly averages graphs. This is what my "day" way like when I started using the Diabetes Diary App.

I just go into Insulin Calculator, type in my blood sugar and enter what carbs I eat, it works out the number of unit insulin to give - and oh yeah! you can easily adjust your insulin to carb ratio throughout the day! Super precise - then just tap the "take it to Diabetes Diary" button and it's there. Too cool for school I reckon.

And this is what my "day" is averaging out to now. Quite an improvement I think.

It feels like the most advanced technological solution I'm going to achieve without an insulin pump. I'm using 2 injections of Lantus every 24hrs, plus between 3 and 6 shots of Humalog a day.

My week, in real time. I just ate a doughnut, hence the uppity spike-ity bit.

I really like these two Apps. They are very handy and I credit them with increased stability in my blood sugar control. No debilitating nighttime lows since I've been using them, touch wood.

It's good to be able to crunch the data too, like seeing time of day averages for before breakfast, post-prandial breakfast, before lunch, post-prandial lunch etc. This enables me to spot any crazy business, and I can check it with the average day graph.

But you know the main reason I got it?

The graph above. Last Seven Days. When I started logging my blood sugar (well, actually it was my parents) we wrote the details in the log book and then drew the graph by hand. We even used the spent test strips (you know, the ones you wiped the blood off and they changed colour? Really long plastic ones that took about 5ml of blood) as little rulers to keep the graph lines nice and straight and accurate.

Did that for about 15 years. Then was told they had stopped making that graph-style of log book, so I would have to switch over to the horrid chart style. Yucky. Didn't ever really like it.

So when I noticed all these DOC folks showing pics on their Dexcom's and CGMs of graphs, I thought, hey! We were doing that after a fashion ages ago!

And that is the story of why I went hunting for a diabetes iPhone app with a decent graphing feature.

- - - - - - -

Currently use Lilly Huma Pen which is metal and has half-units for the Humalog, and the disposable prefilled pens for Lantus. Blood meters is Optium Exceed. Gotta love their crazy take on the English language.

Some positive movement

2011-10-16T20:19:00.000-07:00

I have just had a week off work, for mid-term break, and I did not really enjoy it very much.

It started out because I was lonely, and then, because all I could think about was IF. It was driving my brain around in circles so that I was having palpitations, stress, anxiety, and panic.

Since I had a lot of projects to work on, I felt guilty for allowing my brain to wallow like this. But trying to do other things just made it worse. I find it very hard to be creative, and impossible when my mind is clouded with the thick fog of IF doubt swirling.

So I got on the Interwebs. BIG MISTAKE!

I found what seemed to be a lovely online community right here in NZ devoted to IF. Wow! Where have you been hiding I thought?

You may or may not remember that my last IF-based decision was that the fighting was making me ill and Hubby and I agreed to give it a rest. Just wait.

Well that's all fine, except when I did a quick count and realised that it would be a few years yet before we can get treatment.

So I posted on the forum. HUGE MISTAKE!!!! For these were not supportive IF folks, of the type I've experienced on US and UK forums, no, these were Kiwi chicks who wielded their claws, spat, then closed ranks on me. Me! Another infertile! Honestly, I've never been burned like that, or misunderstood so well. And it was a whole flock of them. I'm not going to write specifics or link to the forum, as that would just give them more power, but lets just say that they completely demeaned and belittled both me, my husband, and our struggles.

Sigh.

So, feeling like complete and utter crap, I did what you do in that situation. I went to walk the dogs with my sister.

She pointed out that although they were nasty on the forum, they were right in the fact that all we do have to do is wait. It's only another year. And she's right. One more year and then we will be off stand-down time (or penalty time as I like to call it) and onto the waiting list.

Let me be clear here: I have NO issue with waiting lists. Sure, they suck, but they are logical.

Stand-down years, however, are not logical. They are a pseudo-waiting list. And that is very suspicious to me.

So my brain which had been moping and wallowing and freaking out turned into a "let's get this show back on the road" type of brain!

Ok, so maybe I ate some chocolate during this process. How can you tell?

I got thinking about where I left off with this paper work battle: the Minister of Health had advised us to contact the CEO of our District Health Board.

Hmmm. That's a CEO, all big 'n important. Maybe I'll just call their customer service line first...

And what a great thing that was! The guy was super-receptive and very helpful. We spoke for over half an hour, and he gave my synopsis a thorough examination. He even suggested where I could go next for help: the Health and Disability Commissioner.

Oh. Yeah, I kinda been there already.

Him: Maybe you should contact your MP, after all, it's an election year!

Well....I've done that too! And the Minister of Health!

Him: you sound like a very good self-advocate! :)

It turned out that when I last talked to an HDC advocate, she gave me bad advice (remember? She basically told me that the HDC couldn't help because my complaint was "paper work and bureaucracy, not medical or clinical"). The customer service dude gave me the details of another advocate right in our own region to talk to. Said she was a personal friend of his and that she would help however she could.

So I've just emailed her. We wait and see.

p.s. It was very good to talk to someone. It was like my whole body relaxed and I had a sudden creative burst of energy. As a result, I weeded the garden and found the biggest cauliflower you've ever seen. Seriously, this thing is in perfect health, and is bigger than my head. It was also home to about 40 snails haha!

Interesting article on infertility

2011-10-09T03:45:00.001-07:00

Interesting article about how infertility changes our perceptions, and perhaps how others perceive us.

I am currently on leave for a week - yay school holidays! I hope to make some artwork this week. I have a couple of ideas so we'll see what I can magic up :P

Unfortunately this time of year is hard for me. I have 1 year left to wait of penalty time before hubby and I become eligible to go on the 18 month waiting list for publicly funded IVF, ICSI, sperm retrieval.

That is a total of 2.5 more years to wait. That will make the total time that I've been waiting = 10.5 years. I will be 31. I am 29 now and I was 27 when I started this blog.

It's not an easy wait. I have had absolutely no contact with the clinic for months. I last spoke to the clinic manager on the phone, telling her I would send in a formal complaint letter. Inertia has gotten the better of me, and when the local politician, and the Minister of Health both shrugged and said they couldn't help, I kinda resigned myself to waiting. Fighting was destroying me.

I would dearly love to change clinics. But because I am not a human being, the NZ health system sees fit to restrict me, someone from the provinces, to a single clinic. This is the only location in NZ where I can access publicly funded treatment - once I wait wait wait and wait for it.

Time away from work is hard, because IF consumes me. I keep thinking about how the beauracrats classify our case, and how we don't fit into any neat little pigeon-hole:

I have primary infertility, but I am perfectly fertile.

My hubby has secondary infertility caused by a vasectomy during his first marriage. So is it secondary IF when it's with different spouses?

Hubby is adopted, and early on he raised the idea of us adopting a child. I knew then that he understood how much a child would mean to me, but not that I needed the child to be mine. Of me, and of him.

Partially, this idea has been tested. I have 3 step kids. They don't live with us full-time, and we get along well. But they're not mine. I look at them and my heart is crushed each time as I remember that hubby has this past which I can do nothing about to change.

Which is also strange, because if any part of hubby's past was different (if he never met his first wife, never had kids, never got talked into having the vasectomy etc etc) then chances are I would never have met'n'married him. And he is my best friend. So I am absolutely torn when that ugly desire rears it's head.

I feel alone. Because I am going thru IF. I am the one who doesn't have kids and he does. So he doesn't have the same sense of urgency or need. Plus I'm not really infertile at all. Technically, I don't know, since my eggs have never been anywhere even remotely close to any sperm ever.

I feel full of unsettling opposites. Infertile but not. Secondary versus primary. A step mom but not a real mum. Happy with life and love and job but unfulfilled. 8+ years in this situation but not long enough duration to qualify.

I haven't even contacted my OB who referred me to the fertility clinic. Maybe he could help - of course that would cost money.

My new GP is very nice. He actually trained in the same class as the head of the fertility clinic franchise. But what can he do? He can change the law can he?

I am a patient who has been left completely alone. No follow up care whatsoever. And reading the article at the top of this post, seeing stories about how the relationship with the RE is crucial - I just feel lost. If I complain now, will they make it harder for us later? They are a business that is largely unmonitored, so they can probably chuck noisy customers to the bottom of the heap.

As you can see, holidays have once again given me too much time to think and mope. Either I spend this week making artwork, or start writin' letters again.

What do you think I should do?

Another year endured

2011-09-26T04:03:00.001-07:00

I say endured not because I've had a bad year, but because I'm on the clock. This October marks the second year gone of our three year penalty time.

You remember why we are in penalty time, eh?

It's also over a year since I started my new job.

My first niece will be 2 this December - I got to meet her for the first time last week - she lives in Australia.

It feels like we are no closer to ever realizing the dream of having children. My children, our children. Not step-children. They're nice but they are not enough to fill this immense void.

I was watching a science-type program called Invisible Worlds hosted by The Hamster, and it showed how if you use different wavelengths of light you can see different things. Like using infrared or UV or X-rays. Then it occurred to me that if ever there was discovered a type of light that could detect IF sadness, surely it would not show light at all, but rather big hazy heavy choking black clouds weighing people down.

I'm feeling more helpless than normal. My life feels overall like it's good, but just so unfulfilled and purposeless. Several times over the past couple of weeks Hubby has mentioned that he hopes we can become parents soon. The thing is, it's not just the money (or distinct lack of it) which bothers me, but also the fact that I've just turned 29. Had a lovely birthday but tinged with deep sadness for me, as 29 is when fertility slowly starts to decline. Now I'm genuinely worried that when our time is all waited that we simply won't be able to have kids. At all. Because a stupid form said we were 5 points short of a threshold. I don't know if I could handle having my hope ripped away from me like that.

Hope is what keeps my head up, and stops me collapsing. That and staying so goddamn busy that i have no time to think about IF.

/ end of wah

I was limping today. Shin splints. Or compartment syndrome. Or a stress fracture. I have no idea how this happened - I walk up a 5 min hill to work and down again at night, but that's about the sum total of my regular exercise. I'm not off sprint training on the sly or anything! Anyway right shin feels like there is an icicle being driven into it when my ankle flexes down. And up. So stairs and hills are my enemies right now.

It's spring and I've been planting strawberries.

It's also the RWC here in NZ, so everyone is mad with rugby fever. Don't tell anyone but I've watched all the All Blacks games so far!

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Spectacularity

2011-08-30T21:38:00.001-07:00

So I've had another big week:

1. My father-in-law has moved into a local rest home. He's looking better than I've seen him in months. MIL is another story...

2. We bought a new car. A minivan. Picked it up last Thursday.

3. Which was also the day hubby and I got on a plane and travelled to Auckland for 3 days of design conference, circus, casino, restaurants, shopping, and room service. Highly recommend!

4. I nearly electrocuted myself. I was sitting in my leather recliner in the lounge, with the footrest up. Hubby said something about a cuppa tea, so I went to put the footrest down - when BANG!! Big blue flash, lights out. Hubby asked "are u still alive?" I was thinking, oh god! I've crushed my work Macbook! Turns out the metal mechanism of the chair footrest had just sliced through the power cable, and with 240 volts here it made a nice blue flash n bang! MacBook wasn't plugged in, so it's fine. Power supply was plugged into wall and is fried. I was saved by the padding in my chair.

5. You can hate me for this next one: I won an iPad 2. Yup. Hasn't arrived yet so I'll believe it when I see it. But wowee!

6. Have just been dropped home by a kind colleague as I fainted at work. A group of us staff were out meeting a new supplier, getting the whole sales pitch. 6th floor, no air con, standing for over an hour, not enough water at lunch, low salt diet, naturally very low blood pressure, ACE inhibitors (to protect ze kidneys) = I fall down. Very embarrassing. Strange, cos my first reaction was that I was having a terrible low. Cold sweats, weakness, spinning feeling, nausea. To do a test and find I wasn't low sent me into a bit of a panic. I was normal people sick. I didn't know how to fix this! Juice wouldn't make it better!!! They gave me water and had me sit, then lie in the recovery position. Felt like a silly litte girl with the vapors. Godamit I do public speaking (teaching) for a living! I'm NOT supposed to fall down. And if I do, only diabetes has earned that right - to make me fall down :P

Currently at home in bed, mid arvo, wondering why I'm not doing something more productive.

Oh, and 7. My hubby's brother, his wife, and My First Niece EVAH are coming from Aussie to stay on Monday :) yay! I can't wait to meet my niece :) it's gonna be interesting to see how I react to having and adorable 2 yr old around the place. I know I will love her, but I sense it will also break my heart more.

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Massive week

2011-08-21T02:07:00.001-07:00

My husband has been violently ill no less than eight times this week. The step kids are staying with us, and now eldest step son has it. :(

The big news has been that my father in law moved into a rest home on Friday. He'd been in and out of hospital, fallen twice, had 4 blood transfusions, heart failure, dysentery, and one ambulance ride in the 3 weeks leading up to the resthome. He's 83.

I'm 28.

Mother in law has not been coping well.

I've been getting sick too. I was up until 2am last night, finishing a major website. I got it launched but now I've absolutely crashed. Sore throat, ears, aches, snotty snout. Wah. :(

We have been on the look out for a new (used) car for hubby. A minivan. I honestly expected to have my own kids in my first minivan. Not just step kids. But they are aged 10, 14, and 16 now, so it's hard to fit everyone in a sedan. We found a suitable minivan today and told the carsales-dude we'd buy it. I will organize a car loan this week.

Tomorrow I will be with some of the other tutors from work at the annual careers expo. Our art dept has a booth and I will be on my feet "selling" our courses for 6+ hours. With a cold. Makes sense. Last time I was this sick I was in the welcome line to hongi at the powhiri!! For those of you who not from New Zealand, Google those 2 words :)

Anyway, I should have more time to blog now that massive web project has launched. So you should hear from me more often. Hope that suits! Lol :P

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I want OFF this damn rollercoaster! Can you help?

2011-07-23T15:27:00.001-07:00

Next week the students come back and I will be in teaching mode again. That will be exhausting but challenging work which I'm looking forward to.

The week just gone has been absolutely frenetic, with last minute course prep (still not done, and it's Sunday!), moving the entire Art department into a newly refurbished facility, oh yeah, and 3 days of compulsory academic staff training!! It's been super nuts.

I know my diabetes control has been degrading. It's like, seriously crappy at the moment. Here's the last 7 days for you:

(Apologies for having to twist your neck to see that!)

As you can see, I'm all over the map. There are some trends, which I guess are a blessing as it may just mean the Lantus (basal) dose is screwed up:

Massive peaks and troughs = massive headaches, tiredness, grumpiness, and brain-fogginess :(

So what I'm doing about it is some intensive tracking and analysis to see if I can figure out where the hell I'm going so wrong. I've just purchased Diabetes Diary for iPhone and that's where I got the pretty graphs. Have to say that so far, I'm liking this app the best of all. And I've tried most of them!

I'd been using the Insulin Calcilator app, made by the same folks (http://www.fridayforward.com/) for nearly a year now and I credit it with a 1.5% drop in my HbA1c, so I figured their diary app was worth a shot too. I like how the two apps work together. I can take a bloodsugar test, enter the results into the Insulin Calculator, then just press a button and it transfers all the data across to the Diabetes Diary, where I can add more info and make adjustments. Cool eh? :)

I think it's really good that I'm back in intensive analysis mode, because if 10+ bloodsugar tests a day aren't giving nice smooth control there must be something else going on. And I can't find it without graphs, averages, and data to help me.

Let's be clear: I test constantly. I inject semi-religiously, and I track it all in my paper log book:

But that doesn't give the instant clarity of a graph, or the insight of weekly averages. I hope this system helps. I suspect it will. I've done this intensive analysis thingy before and it has always had positive results, even if only minor.

BTW, if you can spot any major issues for me by looking at the graphs, please let me know in the comments. All help on nutting this one out is appreciated. :)

I take Lantus twice a day (11u breakfast, 9u dinner), and bolus with Humalog. I'm incredibly sensitive to changes in insulin, and am on child-size doses of Humalog. My I:C ratio is 1:14. I eat between 90 - 180g carbs per day including emergency food like juice and stuff. I walk, weather permitting :P And I work hard and get pretty stressed out at times, which never helps. Anything else you would like to know so you can help, let me know in the comments. Cheers everyone.

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VIDEO: IVF: Lord Winston on private fertility treatment costs

2011-07-07T04:47:00.000-07:00

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...

2011-06-29T03:07:00.000-07:00

...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.

Some grumpy business

2011-06-11T04:49:00.000-07:00

Don't you hate it when you think you are doing something good, and someone slaps you in the face for it?

I have been writing this blog for a wee bit now, and it has been both a cathartic journalling exercise for me, and a way to share information with others in the same boat. I'm really passionate about transparency and honesty in the health system, and the NZ infertility system has really left me disappointed.

Just this week, I thought I was coping pretty well. I had a moment where I thought about all the good things in my life and smiled and got the ol' warm fuzzies. Things like my wonderful husband, my cool job, and the fact that I live in one of the most beautiful places in the world. Even if it does rain a bit too much some days!

But then I got a short, snarly email from someone who I've been in contact with (who I shall refer to as "The co-Author) during the course of my infertility journey. He was pissed off. My husband agreed with him. I couldn't see the logic in what he was saying. The problem the co-Author had was that I'd published his emails to me, which included his name.

Well, duh!

I was discussing a report he had co-authored, and the information he provided me was basically what my whole life was focussed on for a good few months at the beginning of this year. A report that identifies him very easily - just Google the name of the report. In other words - he was already well and truly "in the open" about working in the infertility industry. And if I write the name of the report, it's as if I had already written his name. So no, I don't fully understand the grumpiness about it. I certainly don't understand the complete lack of manners.

But, because I am a nice person, I have wasted several hours removing the co-Author's name from my posts. I don't actually see that this will harm my blog's integrity, as my readers can still find out that information if they wish. And hopefully it will satisfy the co-Author's need to remain private. Didn't mean to offend you see. I understand what it's like to be a private person and have important decisions about your life accidentally, unwittingly, unknowingly taken from you. Sound familiar?

Let me get this straight - I did not go out of my way to make anyone unhappy, I just saw that the co-Author's name was already published, so logically, to me, it made sense to continue publishing the name. It didn't even cross my mind that I should censor it. Sigh. Tricky business this, pleasing everyone.

Oh, and the email wasn't exactly complementary either. It insinuated that I have an "agenda" and this only goes to prove my point: discrimination against those made infertile by vasectomy are considered second class citizens in NZ when it comes to accessing funding for treatment.

OK, so I do have an agenda. Yep, it's really well hidden! Guess what? It's TO HAVE A BABY. How hard was that to figure out? :P

Talking to people, such as the co-author, the MP, the many doctors, the HDC advocate etc, none of it is done for fun. It's the only option I can see at this stage in my journey, because I'm restricted from doing anything practical. Like starting treatment. I've conducted myself professionally and have not screamed and shouted at these people, as my heart wanted so badly to do sometimes. So to have one behave so rudely to me is upsetting.

/end rant

In other, nicer news, I took my first group of students on a very successful field trip, and then attended my first graduation ceremony as a tutor rather than a student! How awesome is that?! :)

What about you? Ever had a spat with someone who only knows you via your blog? What did you do?

Overload and low blood pressure

2011-05-19T21:08:00.000-07:00

Just because I have not been posting recently does not mean I do not love you all :)

I have still been following you all on Reader, but I have not had time to actually write about what's been happening in my life recently. I've come home early today (Friday) and made time to write to you all!

Life has not been terribly exciting, there has just been lots of it.

I am teaching (creating) 4 papers. I am enrolled in 3 papers. Strike that, as of 2.30pm this afternoon, I am enrolled only in 2 papers. Why does it not feel like a relief? Instead I feel guilty, like I have let me tutor down :( Sigh. Move on. Can't do it all.

I have 2 freelance projects on the go, both websites. One is paid, one is done for love.

My husband and I officially started a freelance business venture together yesterday, when we got a domain name. It has now turned from ideas and conversations to "this is real".

I made plans for us to travel next August to a design conference I like to attend each year. This has been hard to plan because, well, see the next point...

The interwebs at work have only worked 2 out of 5 days this week. For-crying-out-loud-I'm-the-Goddamn-Web-Design-tutor!!!! W.T.F. Sob.

The step-kids have been going nuts. Mr 16 turned up unannounced this afternoon and gave me a heart attack when I walked in the front door to see the TV on full noise and him sitting on the couch eating my noodles. OK, that shouldn't startle anyone, but when you are having a low blood sugar, and it's NOT a kids weekend this sort of surprise is NOT OK. Miss 14 is being a whiny pain, and Mr 10 has decided to revert to the behaviour patterns of a very naughty 3 year old. Last weekend when they were here I got so fed up with the way they were treating us that I gave them a stern talk about treating us better next weekend, because we like to be around them, but not when they make our lives so shitty. I am NOT to be treated as hotel staff, and my house is not to be used as a backpackers! Grrr. (Small voice in my head reminds me that my mother always enjoyed the thought of me growing up and having teenagers of my* own to cope with, and now she has the sage advice "this too will pass") *I think this is part of the problem - they are not my teenagers, and I am feeling left out of the experience.

I am currently low, as you may have picked up from the previous paragraph-o-rama. 3.3mmol/L

I also have low blood pressure. Over the last 3 weeks Kind Nurse at my new GPs has measured my BP every Friday. It's never been above 110/60. Today it was a measly 90/60. GP has (jokingly, I'm sure?) told me that if the bottom number drops below 60 then that = death.

(As a side note: seems that the 24hr urine test I did last week has come back with acceptable numbers, just a request to check I don't have high blood pressure [duh], so that, at least, is some good news in the week. Means my kidneys are not failing as bad as the GP thought, but no doubt I will have to have an appointment with him to discuss in detail what those results mean. Hopefully I don't have to have another kidney biopsy. I have already decided that the only acceptable time for me to have anaesthesia will be during IVF! Well, one can try to make plans eh?)

It is now the weekend and I am behind in everything. I have 3 logos to design, 3 websites to create, 1 assignment due on my Diploma of Tertiary Teaching course, 2 presentations to make, dinner to conjure, house to clean, dishwasher to fix, garden to weed, washing to put in washing machine and push buttons beep beep wish-wash wish-wash...

Interview with a PhD candidate

2011-05-01T21:49:00.000-07:00

My blog has made itself truly useful. A PhD-candidate student who is researching in the area of NZ Artifical Reproductive Technology policy contacted me and asked me to become part of her study.

She came today and did the interview, which I was delighted to be a part of. I mean, it's not everyday someone approaches you asking for your opinion on stuff, let alone something you're passionate about! And, it's studies like this that governments take notice of. So I'm hopeful.

The interview itself was about an hour long, and although she had a set of questions to ask me, the first one "tell your story" was incredible. Just to speak all those thoughts and feelings out aloud to someone who wasn't judgemental, who got it, and who seemed very interested in what I had to say was wonderful.

For me it was a cathartic experience. I just hope that my input is helpful. She (I won't reveal her name, since I haven't revealed mine that wouldn't be fair now would it?) mentioned that it's hard to find people in New Zealand going through IVF or other ARTs, because of the privacy laws. That's why my blog gets a pat on the head today :) Good blog, goooood blog. (Don't know why my blog has turned into a cat but it has.)

Blogging has allowed my voice to be heard, to be found, and hopefully to make a difference. I quite like that. :)

Day 3 FSH, LH, Oestradiol and cortisol blood tests

2011-04-29T20:46:00.000-07:00

I got up super-early this morning (for me, anyway!) so I could get down to the medlab for my 8am blood draw. It had to be 8am because the cortisol test needed to be done specifically at that time. My GP is investigating why my blood pressure is so low (100/60) especially since he wants me to put me on ace-inhibitor to help save my kidneys - which are misbehaving. I believe that if he finds a problem with the cortisol level it will indicate an adrenal issue, which could be what's causing the low blood pressure. So that could be fixed (one hopes??) and then my ace-inhibitor dosage could be increased to PROTECT ZE KIDNEYS! more. Yup.

Also did the CD3 FSH, LH and Oestradiol hormone tests at the same time, and picked up the huge bottle needed for the 24hr urine test for proteinuria - ITZ ZE KIDNEYS U KNOW!

Saw my aunt in the waiting room. She's just got new kittens! Pixie and Poppy! I can't wait to meet them :D

Oh, and then it was off to work. Last day of office work before the students come back from break on Monday.

I had sent out the grades for the students' first projects yesterday, so I was not surprised to get emails from some students wanting to discuss their grades. Of course, my most troublesome student wanted to meet. And bring her Mum.

I asked the other tutors who were in if they would take a bet on whether she would cry or not. They wouldn't take the bet. I so far have a 3 out of 3 strike rate for crying students at my desk. I go through a LOT of tissues. (Let me clarify: they don't cry cos I'm mean to them, quite the opposite. I try to put realistic pressure on them and they get overwhelmed sometimes. It is very difficult to succeed in a design qualification or career because it's so subjective. The students put a lot of pressure on themselves, and getting a low grade can be crushing for them. I offer all the support and help I can, but you can only lead a horse to water...)

Let's just say it was an emotional meeting, but she left happy.

Kids arrived this evening, but one is working and one is at a Pony Club thing, so it has just been Hubby, Me, and Mister 10 for dinner.

NIAW: Bust an Infertility Myth - Vasectomy is infertility too!

2011-04-27T02:26:00.000-07:00

What is NIAW?

I may be in New Zealand, but I am still excited to be involved in America's National Infertility Awareness Week's Bust an Infertility Myth challenge. It's a fantastic campaign to raise awareness for infertility and break apart stereotypes people may have of what infertility is all about. The organisation Resolve.org is the driving force behind the action, and I only wish they had a New Zealand branch!

What is the Infertility Myth that I will bust?

I have chosen to talk about the myths that surround my life, even though they rarely get mentioned out loud.

Myth: Having a sterilisation (i.e. vasectomy) is not true infertility, it's just contraception! What did you expect?

Busted: Actually, that's not true at all. Not. Even. Close.

Let's look at what infertility actually is. The inability to conceive a child after one year of unprotected intercourse (as defined by my doctors and FertilityNZ). And what is a vasectomy? A surgical procedure where the vas (tubes that carry sperm into the seminal fluid) are cut, so that conception will not occur. On the surface, yes it does appear that a vasectomy is indeed a form on contraception. A very effective and (normally) permanent one.

So why am I now classed as an infertile woman?

My husband has a vasectomy. He got it in his previous marriage, and from what he's told me, he did it because with 3 kids already he felt it was the socially responsible thing to do. There may also have been some pressure from the ex-wife too.

We now want kids. I have wanted children for a while. This year we will click over 8 years of infertility. During that time, I have been in as much anguish as any other infertile woman. We may have different underlying causes to our infertility from the majority of other couples, but there is still sweet f*ck all that we can do about it. Without major, expensive medical intervention, of course.

I still desperately want to be pregnant, to give birth, to buy baby clothes for my child and not someone else's, to raise a family with my husband (not just step-kids who very clearly belong to their Mum), and to grow old knowing I will become a grand-mother and have my family line continue.

I remember the shock and hurt I felt when my ob/gyn told me nonchalantly that I was infertile. No I wasn't! I was at his office to discuss getting a vasectomy-reversal for my husband (and more specifically, what I would need to do to get my body ready, as a T1 Diabetic woman) - not to be diagnosed with a new condition!! The shock and disbelief were real. The pain, tears, and anguish are real.

In many blogs I read about IF, women talk about how they hope that their next cycle will be the one, or that next year will be the one, or that this new treatment will work. I feel completely left out, because we are not able to pursue treatment actively at the moment. A vasectomy is 100% effective so it's no use waiting for the next cycle. No amount of (very fun) trying will make a bit of difference.

I see it in people's faces when I reveal that we now want a family. In my parent's surprise, in my friend's careful questions. They are wondering what the hell is wrong with me, wanting to have kids with a (wonderful, loving, handsome, caring, generous, sensitive) man who has a vasectomy! I knew what I was getting into.....didn't I?

Answer: no. I knew that my husband-to-be had a vasectomy, and I vaguely knew that you could get them reversed. But at the beginning of our romance that's about all I knew. I also didn't know that we would fall madly in love and pledge to spend the rest of our lives together in front of our families on Valentine's Day in a heavenly Chinese garden. I didn't know I wanted kids back then when we started dating. And it's not generally something you discuss until the relationship is well and truly "serious".

But once we began investigating the idea of a vasectomy reversal, it soon became clear that it would a) cost a lot, and b) have a very low chance of success. The doctors recommended the big guns for us. What else but infertility would require IVF, ICSI, and sperm retrieval to make a baby?

I was devastated when I found out that I would need to have all the IVF drugs. I did know that IVF was incredibly expensive, and so it was only because we were told that we would "surely" qualify for public funding for fertility treatment that together we went through the infertility workup. Nearly a year passed, with blood tests, ultrasounds, an operation, and consultations, all for naught when we were cruelly denied access to public funding at the last minute. In fact, during the consultation where we were expecting to be given a schedule appointments to kick-start IVF.

I have spent every spare minute over the past year and a half thinking, blogging, emailing, writing, meeting people, and just generally trying to get that heart-crushing decision changed. So far no luck.

But along the way I really hope that I've changed some people's minds about what constitutes infertility. And a sterilisation from a previous relationship certainly counts as infertility. It takes away the couple's right to choose and determine their own life. It brings worry and anguish into the thoughts of the couple, and in our case, it puts the ability to access treatment in the hands of doctors and government officials. How could anyone not be severely affected by this? How could anyone think this is fair? (As the folks who determined the rules do). It has completely changed my life-view. It has made me an advocate for my health and my future.

Believe me, no matter what the cause of your infertility, it will still hurt.

An unwanted sterilisation causes the inability to conceive. This is infertility. It is not able to be changed by the current couple as there is no way to go back in time and alter the decisions made in a previous relationship.

It is my goal to help raise awareness in the New Zealand community about this issue, and I would ultimately love to get the laws around access to public funding for fertility treatment altered so they are no longer discriminatory against couples who have experienced the trauma and suffering of infertility caused by sterilisation from a previous relationship.

Where can you go for more information?

Gain a basic understanding of infertility here http://www.resolve.org/infertility101

Learn more about National Infertility Awareness Week® (NIAW) http://www.resolve.org/takecharge

Where can I get more information in New Zealand?

www.fertilitynz.org.nz - Fertility New Zealand is committed to supporting, advocating for and educating all people who face infertility challenges at all stages of their journey and beyond.

Retinopathy Photography and Feijoas

2011-04-26T22:28:00.000-07:00

More good news: eyes are fine :D

This is not my retina. But mine looks a bit like that...

I am very pleased that the local eye clinic/hospital has invested in a special anti-diabetic-retinopathy-eye photographing machine, because it means I don't have to have the horrid eye-dilating drops. They sting. They make your eyes sensitive to light (light hurts them), and everything goes blurry so in the past I've had to have a helper drive me home. But no more drops! In and out in under 20 minutes! :)

First day back at work after the hols, and the building was freezing cold. Winter has hit our region with a vengeance. We've had torrential rain and gale force winds for the last 3 days. My cat went mad with the wind and yowled all day and night. Nothing could soothe him, poor thing. There was minor flooding in some places, but the wind! Two trees blown down in my street, and when I got into work today both my colleagues in the office had a big tree down in their gardens too.

I am looking suspiciously at my new fig tree. It has gone from a perfect, perpendicular happy tree, to a slanty, suspicious, "I might fall over, I might not" tree. May have to get out there and tie a rope around it to hold it upright....is that a good idea? I'm not sure...would the tree then just snap?

But winter/autumn is also feijoa season. Yum.

Here in New Zealand, you never buy feijoas. Instead, you wait, until eventually 5 people will offer you a big bag each of fresh feijoas from their trees. "Please take them!" He he he :P I've planted a feijoa tree too, and so far I've eaten 2 fruit off it. I have also stolen many fruit off the neighbour's tree over the back fence as the branches hang low into my vege garden. And I stare wistfully through the fence into the other neighbour's property, where hundreds of feijoas rain down on the dirt and don't get eaten by anyone except the birds. When the sun comes out, and the feijoas on the ground get a bit warm and start to ferment, you can see the birds walking around all tipsy. This is what my cat waits for. :P (Don't worry, he is well fed and only really catches lizards).

I got a bucket load of stuff from the pharmacy last night. Enough bags that the other customers gave me funny looks. Ha.

Top left: pen needles, boxes of Optium test strips, orange plastic case: glucagon emergency kit, Humalog pen vials (insulin), small white and orange box: statin, small white bottle: ace-inhibitor, grey pens at the bottom of pic: Lantus (insulin)

This is actually a small haul for me, as it's the tail end a the prescriptions from my old GP. And how in hell did anyone think that 2 Lantus pens would last a month? I'm using 690 units per month, and one pen only hold 300 units if you're lucky. Stupid old GP. Can't wait to put in my shiny new prescription from my new GP. :)

Took my first dose of the statin and the ace-inhibitor (to PROTECT ZE KIDNEYS!) last night, and I've not had any way-ward symptoms today.

Oh, and had an insulin disaster *smack forehead* moment when I was packing all the above diabetes-crap away. I found out that 3 vials of my oh so carefully hoarded Humalog actually expired last October. So now my stash is significantly smaller. Although I haven't had the nerve to throw them away yet....better to keep them, just in case.

Diabetes Annual Review

2011-04-25T18:52:00.000-07:00

I've just returned from my first ever Diabetes Annual Review (DAR), for free at my new GP's office. Good golly they checked everything. It even included a smear test!

I had a bunch of blood tests a couple of weeks ago, and we discussed the findings in detail. I also got the "tickle test" (where they check you still have sensation in your feet - I was pleased I didn't giggle too much this time), the "read the letters from the chart test" (to check vision), pulses wrist and feet, heartbeat in chest and back, and liver check.

I was passing with flying colours, I even scored a brilliant HbA1c of 6.5% (down again! Yay!)

By the way, if you are a diabetic in New Zealand, or if you know a diabetic in New Zealand, get them to login to TuAnalyze and add their HbA1c data to the map! Look, we only need 12 more NZers to get NZ to light up!

But then came the bad news :(

I have proteinuria, which mean that I spill protein from my kidneys into my urine. Usually, with a diabetic, that is a sure fire sign that your kidneys are on the way out. With me they are not so sure. I had a kidney biopsy way back in '95 (I think??) and the results were inconclusive. Basically they told me that I "might just be one of those people who spill a bit of protein".

Well, with this latest round of blood tests it showed that my kidneys are getting worse. I got a microalbumin of 577, which is waaaaaay to high. All other kidney function tests were failing too. Wah. The GP has duly sent me off to get those big lovely bottles so I can do a 24hr urine collection test. (Translation: you will spend an entire weekend at home collecting pee). He said that if the protein comes in over a certain ratio, then I will have to have another kidney biospy. The biopsy itself was not too bad, but diabetes and me and anaesthetic DO NOT GOT WELL together. :( So everyone please cross your fingers that it's not a high result.

The only thing I can do to protect my kidneys is to take an ace inhibitor, like enalapril or lisonopril. I did try that a couple of years ago, but I stopped taking them after only a couple of weeks due to problems with low blood pressure. The GP couldn't believe it today when he checked my blood pressure and it was lower than before! Now down to 110/60 (and he said that the bottom number needs to be above 60 for efficient blood flow throughout the body or something, i.e. not being dead). So two things will now happen: 1) I get put back on the lowest dose ace inhibitor available, about 1/2 a 2.5mg tablet per day, and I go for another blood test, this one to check my cortisol as it may be affecting my blood pressure and making it go too low.

And the last thing? Yup, even with my good cholesterol (HDL) coming in with excellent numbers, and my ratio of HDL to LDL being great, my LDL is still ever so slightly too high at 2.2 - so he's putting me on a daily statin as well! I am awful at taking pills :( Can never remember them and have lots of trouble swallowing them :( But if it helps prevent me having a heart attack or kidney failure, then it's a good idea to TAKE THE DAMN PILLS ALREADY! (p.s. I'm yelling at myself, not at you, dear reader. Feel free to join in and yell at me to take my pills!)

Today is the last day of my mid-semester holidays and we had torrential rain yesterday and now we have gale force winds. I bought my lunch and drove down to the cliffs overlooking the beach and islands, and got actually very scared when it felt like the wind was going to tip my car into the sea. I reversed back into the hill a bit, and the car stopped rocking about like a aeroplane in turbulence. I ate my custard square looking out over the sea. It was pretty and violent and windy.

Blog Awards! Yay!

2011-04-24T22:46:00.000-07:00

I am delighted to receive these blog awards from EBC over at Our New Plan A :D

Thank You!!! :D

They come with a few rules though, so I will do my best to do this right :)

1. Link back to the person who bestowed the awards on you (yup).

2. Tell us 7 things about yourself, for each of the awards (total 14 things):

I'm a web designer and graphic designer by trade, and I currently tutor design at the local institute of technology. It's the best job I've ever had, because it tests my problem solving skills and makes me a better designer. I've got a great bunch of people to work with, and my boss was actually my favourite tutor back when I was studying for my degree!
I live in New Zealand with my husband of 2 years and my cat, Chomsky. Currently, my cat is outside in the back garden stealing the bread I put out for the birds. He doesn't think I can see him :P
I have 3 teenage step kids, and they come to stay with us every second weekend. It's a timeshare arrangement! I have learnt that our house is far too small for 5 people to coexist without killing each other. Our house is still small when they're not here, as their bedrooms are of course still filled with their stuff.
Although I am a designer and an artist, I do not have a studio at home: no room. So that is perhaps why I enjoy web design so much now. Just sit anywhere with a WIFI connection and a power source and my MacBook is good to go.
Last night I made 58 muffins. Today is ANZAC day here in New Zealand and also in Australia. I made the muffins for ANZAC day lunch. We organised for MIL and FIL (who is 83 and frail, uses a walker) to meet us at the parade in town, and we went to collect the 3 sprogs (as it was not our weekend). It's also Easter weekend. The kids have faaaaaaaaar too much chocolate. I was not amused when they demanded to know where our easter eggs for them were. sigh. (Oh, and MIL brought marshmallow cake from the bakery, so everyone wanted to eat that instead. Yay :S )
Hubby and I are infertile as a couple. He has obviously had 3 kids with his ex-wife, and it was also during that marriage when he was persuaded to get a vasectomy. The youngest is now 10yrs, so we know the vas is too old for a good chance at a successful reversal.
I am in the strange position of being an infertile woman (in a couple) who is technically not infertile at all as an individual. I have primary infertility (never had a child) while hubby has secondary (or perhaps is it quarternary infertility, since actually he can't get me pregnant with his fourth?). We've been on this journey for a child now for over 7 years. Our current stumbling block is simple: money. We haz none. We have been denied access to publicly funded fertility treatment (for 3 years) because the NZ government doesn't think that being infertile due to sterilisation is enough to warrant immediate attention. Like it doesn't cause enough emotional pain and suffering or something.... go figure. I won't dwell on this stuff in this post, if you would like to know more, check out the archives on the right >>> :)
I love gardening. I've spent the last 3 days with my Mum weeding my vege garden and front flower garden. It's a big job, and it's nearly winter so everything is wet. We got rained on several times. Yesterday I planted cabbages, silverbeet, broccoli, spinach, spring onions, beetroot, carrots, 2 kinds of lettuce (buttercrunch and lollo rosso), and cauliflower.
My favourite place in the world is with my husband, wherever that may be.
Our favourite place together is probably our little beach hideaway up the coast, where the fishing is ok and the cellphones don't work.
I am addicted to my iPhone.
I credit my iPhone with a 2% drop in my HbA1c test results. How? I got an app called "Insulin Calculator", which mimics the bolus wizard on an insulin pump.
Oh yep, I am Type 1 Diabetic, on Multiple Daily Injections of Humalog and Lantus. This year will be my 23rd anniversary of diagnosis.
The house I live in used to belong to my Grandmother. The walnut tree that I'm looking at originally came from her mother's place further up North. So that walnut tree is my link to my Great-Great-Grandmother. It makes seedlings all over the place, so plenty of my family members have got walnut trees growing all around the province now :)
And one for luck: Went to the dentist (finally, after 3 years!) and he wants to book me for 3 more appointments, and a trip to see an orthodontist. Someone asked me the other day how much it will cost. I said "All of it!" :P

3. Award other bloggers

The Versatile Blogger award is supposed to go to 15 "recently discovered bloggers" and the Stylish Blogger award is supposed to go to 10 - 15 blogs "you feel deserve this award".

If you find your name below, I have given you both! (but you can just do one if you like, or none even! Your choice.)

Hope you've had a great Easter and ANZAC day :D

Christa at http://icantcontroleverything.blogspot.com

Sam at http://pancreasonmybelt.wordpress.com

Vicky at http://waitingforstork.blogspot.com

Layne at http://laynenp.blogspot.com

Juliane at http://mommytobe09.blogspot.com/

http://chasingachild.typepad.com

Bridget at http://ourstorkgotlost.blogspot.com
Kim at http://www.textingmypancreas.com
Haley at http://www.naturallysweett.com
Siobhan at http://clickofthelight.blogspot.com
Kerri at http://sixuntilme.com
Serenity at http://exploringchaos.com
The Mamas at http://bionicmamas.blogspot.com
Cattiz J at http://cattiz.blogspot.com
tbean at http://alittleturtle.wordpress.com
Julie at http://www.alittlepregnant.com
JM at http://accidentalstepmom.wordpress.com
Blair at http://theheirtoblair.com
Marcia at http://www.the123blog.com
Saffy at http://www.t1mommy.com

There, that should keep everyone busy for a while :P

(p.s. this is nowhere near everyone in my Reader account! I didn't realise I subscribed to so many talented writers and bloggers! :D )

Progesterone blood testing - again

2011-04-21T14:38:00.000-07:00

I had phoned my GP's nurse to put in a request for more diabetes supplies, and at the same time asked if I could re-do the fertility-hormone blood tests. I just wanted to check and make sure nothings changed. She was really helpful "no worries!".

So today is 21st April, which is coincidentally also my CD21, which means it's time to get my progesterone (and HbA1c and Complete Blood Count) blood draw done. I think I will wait until I've got the remainder of the hormone tests done.

One near-snafu is that the remaining blood tests have to be done on CD3, which currenlty looks like it will fall on a Sunday. When the lab is closed. Dumb.

What were they thinking??

2011-04-19T00:08:00.001-07:00

This is quite obviously a guy's ute. It has business branding all over it. Check out the number plate:

I know right? What were they thinking?? :P lol

In less trite news, I am now on holiday. I get ten days for mid-semester break - no students, no lesson plan, no meeting, no....dishwasher? Unfortunately yes, it be broken :( it takes our family exactly 2 days to use all the dishes we own.

So I've been doing a lot of house work, cleaning, loads of laundry.

And I like me new GPs office very much. Got a call from one of the nurses today about a discrepancy in my notes. She was super cool to talk to about sorting out a whole lot of blood work tests I need to get done, and getting a serial card so I can have an HbA1c whenever I want (read: remember).

She was also happy to add tests for fertility hormones, just because I want to be proactive and you know, know that stuff and not be surprised with it at any stage.

The nurse I spoke to is also really interested in diabetes, both types, and she encouraged me to come along for a free diabetes check. My old GP didn't make much of a case for this check, but my new GPs office is really into it. She explained that it will cover more than what my diabetes care team looks at, such as blood pressure, full blood work, feet, eyes etc. Hey, it's a free full physical. And I'm on holidays. What's not to like?

Oh yeah, the vampires. Had to get bloodwork done before I can have the check. Bah. Dislike.

BTW, it is not advisable to have a blood draw after you've just exercised for 30 mins and have a blood test of 4.7mmol/L. Causes near-fainting in the phlemotomist's chair. Lol

Ooh and the best bit! I still haven't told you the best bit: when I was on the phone to the nurse she got my new prescription for insulin et al. sorted out.

"How many vials do you normally get?" she asked.

"Um, my last doc just wanted to know how many units per day I use, and he would work it out. But it meant I never had enough to last me through the 3 months because I do a 1- 2 unit air-shot to get rid of bubbles."

"OK, we'll give you 5 vials of each Lantus and Humalog, and see if that's enough"

"*smile*" that's going to be 30 vials of insulin over 3 months!!! How awesome is that! I loooooove having backup supplies in the fridge. This means I could also put some spares at work too. How wonderful :)

(non-diabetic readers will probably wonder why I'm getting so excited over a prescription. Well it means that I will have an adequate backup supply of my absolutely essential insulin. It also means that my new doctor's office understands this and is willing to be flexible and helpful)

- Posted using BlogPress from my iPhone

What does a shower do to one's blood sugar?

2011-04-13T03:22:00.001-07:00

This!

What. The. Hell.

Yup, apparently now I need to consider showering as exercise, because it sends me low about 70% of the time. Who knew?

Anyone else experience this?

- Posted using BlogPress from my iPhone

When you feel uncomfortable

2011-04-09T04:50:00.000-07:00

For me, hell is other people.

Hubby and I have just returned from a 25th wedding anniversary party of a good friend of his. In fact, hubby was one of their groomsmen. 25 years ago I was 3 going on 4. My sister was only a month old.

I had a lot of trouble at the party, and not just my normal issues where I feel uncomfortable because I'm not drinking, don't know what to say, don't know anyone there, or am a good 20 years younger than everyone.

No, tonight was hard work because they were celebrating their 25th wedding anniversary. And I don't know if we will. After 25 years they have 3 kids, a fabulous home etc etc, and I don't know if we will have any of that. I hate when our age difference gets thrown in my face like that :(

Note: hubby and I love each other very much, and we had a big hug and agreed that neither of us had particularly enjoyed the party and the speeches, but it seems for different reasons. Oh well. Life goes on.

Another note: turns out I am rather low. 3.7mmol/L. May explain the randomness of this post a bit. Today has been odd, food-wise. Woke late at about 11am, and Hubby made breakfast in bed: bacon, eggs, salad, toast. Yum. But a strange-late breakfast combined with a new insulin-carb ratio meant my day has been tough to manage. Blood-sugars = random. Then we completely missed lunch because we were trying to set up a new modem. MUST. HAVE. INTERWEBS! And of course, dinner at the party tonight. I got to try smoked Marlin. Very tasty, but no carbs in fish. Plus some stress, plus walking to and from the party = low.

Anothernother note: it has taken me 2.5 hrs and 1 James Bond movie ("Die another day"? "Never say die"? "Never say die another day?") on late night telly to write this :P

Visits with my new GP and diabetes nurse educator

2011-04-07T03:09:00.000-07:00

I am so glad I changed GPs. My new GP was quite happy to spend an hour chatting about diabetes and IVF, and he was very interested in my experiences as an adult diabetic with Type 1.

It's fantastic to have stable, positive GP care again. I've missed that. My last GP went nutso. And then his receptionist went nutso too. Yeah so after more than 6 months of inadequate care from my old doc, I finally have a primary care doctor who I feel I can trust. (Oh, and the nurse-receptionist gave me a flu shot, which has hurt like billy-oh for 3 days now :( wah)

Yep, so that's a load off! :)

I also went along for a very quick appointment to my diabetes nurse educator. Even with a bunch of builders and electricians in the office (some hospital renovation disaster) she was still able to spot the cause of a trend that I haven't been able to figure out. I keep waking up either on target or a bit low, then going high coming into lunch, often having a low at around the 4pm mark, and then just getting really crazy wild variable results at dinner.

She explained that if I increase my insulin to carb ratio for breakfast, from 1:14 to 1:12, this would give me a slightly larger breakfast dose of Humalog, which would help prevent the highs at lunchtime. Having a more normal lunchtime test would mean I don't over-treat the lunchtime dose, which will in-turn help prevent dose stacking and 4pm lows. No 4pm lows will mean a more stable dinner test result. Well, that's the plan. I will give it a crack :)

Oh yeah, I've also finally gotten around to it, and booked an appointment with my dentist. It's only been like, what, 3 years!! :P

As you have probably guessed, I have a sore tooth. Not too bad, but enough to make me pick up the phone and call. It will probably hurt my bank balance more than it hurts my jaw.

My GP, just to hop back a few topics, was interested in our struggles to get funding for IVF, and interestingly enough he got to talking about doctors he had trained with. Turns out the chief of Fertility Associates was in his class at medical school. So he's suggested I write a letter to him directly.

Yes, you have heard me say that "I will write letters" before. And you know that it takes me bloody ages to get around to actually doing it. That's because life makes me tired, teaching makes me tired, diabetes makes me tired, thinking about IF makes me tired, and getting the strength to sit and write a coherent and convincing letter, which I know will in all probability only result in a polite form letter or brush-off, is hard. It's hard enough just to think about it, let alone turn the events of the last year and a half over in my head without breaking down into a sobbing mess.

But I have to make time to write the following letters:

Complaint letter to CEO of Fertility Associates
Letter requesting review of our case, with special consideration of our unusual case, to head of the local district health board
Perhaps a letter directly to the Minister of Health, as he didn't truly "get it" when my local MP contacted him. In fact, he completely missed the point.

Yep, I will get there eventually. Surely, sooner or later, someone in a position powerful enough to fix this mess will see that logic has just escaped the building when they decided to discount the medical facts.

Work has been a bit manic, with all my students preparing to submit their first design projects this week. Oh the craziness and tears and wailing and "I can't do this" (them, not me) and "I've lost my design mojo"! Ha! It's great! :P It's the time when my students finally figure out that what I've been teaching them is actually useful, and if they are one of the students who pay attention and put in the hard slog, then presentation day is a blissful relief. Of course, it's always the 20% of students who cry and wail and stamp their little feet which make it all so exciting. Getting them across the line is all part of the challenge. I get to be a design tutor, a counsellor, a life coach, and a technical help line all in one. And I love it. I love figuring out what makes them act the way they do, and how I can best use that knowledge to help them learn. But by jove is it tiring. I tell all my students I am on call 24/7 (whether I answer then is another matter :P ) but most of them are taking me up on the offer, and actually coming out of their teenage shells and COMMUNICATING with me, which is fantastic! :)

Easter is coming up, and I got in early and bought a bunch of yummy chocolate eggs for the step-kids. Goddamn! 3 teenage kids can eat a lot! But they haven't found where I've stashed them yet. I don't think...better go check!

p.s. sorry I've not posted as often as I normally do - we've had some severe interweb connectivity issues :(

Letters received, a decision made

2011-03-25T01:52:00.000-07:00

This week a letter arrived back from the Member of Parliament (MP):

Monday, 21 March 2011

Dear [Kaitake] and [Hubby]

Thank you for the copy of correspondence between yourself and [One of the authors of the report: Access to Infertility Services: development of priority criteria: a consultation document. Simply referred to as "Author" from now on]. It was interesting to read and after the meeting in my office, it became clear that the single issue stopping funding at this point is when the three year time-frame officially commences for a couple who have one partner sterilised.

[The Author's] comments around the duration of infertility and balance of fairness they seek to manage are important considerations.

Following up from your recent visit and the information you have previously provided, I have written to the Minister of Health and received a reply last week from the Hon Tony Ryall, which I enclose to you.

The Minister's third paragraph mentions that a request for a second opinion on the review of your CPAC score can be made to the [local health board]. [The Author's] opinion is that the CPAC score was correct according to the criteria; however seeking a further review and if possible, a fresh assessment which takes into consideration [Kaitake's] diabetic condition, may be worthy of further consideration.

I know that IVF treatment is expensive. Failing public funding, consideration around personal funding is something you could consider if the waiting period is too harrowing for you. These are deeply personal and highly important issues and I wish you all the very best in approaching the [local health board] for a review.

If we can be of any further assistance please don't hesitate to contact my office.

Kind regards,
[MP]

and here is the letter from the Minister of Health that the was mentioned:

14 Mar 2011

Dear [MP],

Thank you for your email of 25 February 2011 on behalf of your constituent what has asked if her application for publicly funded IVF treatment can be reviewed.

Your constituent will have been assessed by a clinician using the clinical priority access criteria (CPAC) tool. CPAC is a decision-making tool to assess a candidate's suitability for publicly funded fertility treatment and takes into account a variety of factors such as the candidate's age and Follicule Stimulating Hormone level. Decision on who qualifies for publicly funded IVF treatment are made by clinicians.

Ministry of Health officials advise me that a second opinion to review your constituents's CPAC score can be requested from [the local health board]. Your constituent can contact the Chief Executive of [the local health board] by writing to:

[contact details enclosed]

Your sincerely

Hon Tony Ryall
Minister of Health

There are just so many things wrong with these letters it's unbelievable. The MP suggest we pay for fertility treatment ourselves (well, duh! of course we would if we could! we're not all BMW owners). I don't particularly feel like divulging all our financial concerns to him, I mean, I think I've been pretty honest so far. Told him about our fertility problems for godsake.

Then there is the Minister of Health politely passing-the-buck back to the local health board. Who don't offer fertility services. Oh, yeah, and I consider it pretty insulting the way he has just parroted off some crap about FSH... there is nothing wrong with my FSH. Get with the picture and stop telling me useless pieces of information. It's so reassuring to know that when the clinic gets it wrong, you can't actually get results from the government, because "clinicians make the decisions". And who monitors them, eh??

And I especially like the way that no one has taken notice of the fact that there is actually more than one issue for us here:

in our case, a 3 year wait is a penalty. We are being penalised for my husband having done the socially upstanding thing of having a vasectomy in his previous relationship. There is no medical reason for a 3 year wait (with unexplained infertility, waiting 3 years = 80% chance that the couple will have conceived naturally). In fact, for us it increases the chance of my having a child with Down's syndrome, or having complications, or dying in childbirth. (we will be eligible for public funding in September 2012, I will have clicked over 30yrs. We will still have an 18 month waiting list after that. The earliest I could become a Mum is 2014 or 2015, it may even be 2016. I better bloody have my flying car by then, cos that's the future.)
the incredibly bad and uncaring way in which the Hamilton FA clinic has treated us, like we are second rate citizens
the way the CPAC form is engineered against us, specifically designed to deny us the right to have a family. It is discriminatory. The points are not deducted for having a sterilisation, or something logical like that, which I could understand. No, the 30 (!) points we lost were because of a catch-22 situation where the have to engineer a "when did your infertility begin?" date, so they base it on the first time you saw a doctor for infertility. This totally discounts 7 years of my life where I've wished for a child.
the CPAC form does not take the male-partner's age into account, only the female's. This is unfair and discriminatory. In our case it especially important as my husband and I have a significant age difference.
How the Government did not accept the recommendations of the advisory panel, to set the CPAC threshold at 55 (which would mean we qualify) and instead set it at 65. Money. Always money. And since infertility in basically an invisible disease, there is no massive groundswell of support, say like for breast cancer, or diabetes.
the way that the GP and then the OB/GYN both took our money and did loads of invasive tests, only to refer us to the fertility clinic at the very last minute, wasting valuable time. NZ patients are actually allowed to self-refer to fertility clinics. No one told us.
The fertility clinic for insisting that I have an unnecessary operation, and the stupid OB/GYN for taking plenty of public health money to perform the operation.
that there is no regulating body where I can take a complaint regarding the paperwork side of the fertility industry.
the sheer injustice of the situation, how bloody unfair and illogical it is, how it's put my life on hold, how it invades my every waking moment :(

So Hubby and I have made a decision. We will make one last attempt with the letter-writing and shit. And then leave it. Because, honestly, no-one cares. I've been crying every night this week and it doesn't make anything better. I can write emails and letters to everyone until I'm blue in the face. But nothing is working. No one will help. Or no one can help. It's useless. But I will try one last time.

Please excuse my foul language. I am in a bad way.

You will be bored with this. I know I am.

2011-03-21T05:11:00.000-07:00

I had contacted one of the doctors involved in writing the guidelines behind the CPAC form. I send a copy of the 2001 form I found online, and a copy of our form from the fertility clinic. They looked different. Written by different people. Different wording. Either way, neither of them stated on the form that "duration of infertility" would be scored from the date of first doctor's visit regarding infertility, should one of the partners be sterilized.

I really thought I had found the piece of evidence I was looking for. I thought I had it. So close.

But today I received an email which, dear readers, nearly caused my computer mouse to be crushed in rage. It was a reply from one of the co-authors of the report mentioned above. He very politely told me that the form our fertility clinic had used was correct. And that their score of our case was also correct. I couldn't breathe. I was shaking and rooted to the spot. I feared to move in case I burst into a flood of tears, in the (shared) office.

Now, don't get me wrong. I have no malice against [the co-Author of the report]. It's just the system is so weighted against our particular situation that I now feel at a complete loss. I am writing this at quarter to one on a "school night" because I just can't sleep. Imagine a nice tasty acorn. Now see it bouncing around in my head. Now picture a squirrel, with small bells on each ankle, chasing it madly. That's what my brain is doing :(

For posterity, and you interest, I enclose copies of my emails to and from [the co-Author]:

(in reverse order: read from the bottom, mine in blue)

Hi [co-Author],

yes, please understand I do not "blame" you. It's an awful task to determine eligibility rules, and I realise you have had a difficult job to do. I also knew about the MoH raising the threshold. I suspect that may have come from a poor understanding on the Govt's behalf of the toll infertility takes on people. I have heard infertility described as an invisible disease, which you cannot truly understand until you have experienced it.

I will definitely be pushing for more funding, although as a patient in the NZ health system, who has received free healthcare my entire life, it is very strange and disconcerting to now be left entirely on my own. The system has not taken care of me. If this were a regular consumer service, now would be the time to talk to Fair Go, or Target, but it's too personal. It affects my entire family.

I want to say I really appreciate your help and clarification, I certainly wasn't getting any progress from Fertility Associates, so it is at least refreshing to have the facts, for once.

Thank you.

Kind Regards,

[Kaitake]

I understand your frustrations. However, as country, NZ is not that well off when it comes to Health funding and the CPAC system has gone a long way to try and make access fair to all. We cant afford to treat everyone, and so we need to rank patients and offer access accordingly. From data I have collected in Dunedin, from 1386 couples referred to us only half (667) had access within 1 year of referral, 449 had access up to 4 years from referral (as you will have) and 270 couples had no access at all. If we could treat everyone we would be delighted because we understand the stress of not having the opportunity to have a family.

In your situation you will gain access in about 2 years, and so you will have the opportunity of having a family.

I guess you can blame me for this situation since I was the one that designed this scoring system. But I hope you understand why I think the score is not flawed in your situation – for reasons I gave in the first email. But as I said in the first email the score that will enable early access is dependent on how much funding is given through the Health Budget. When the CPAC was designed we argued 55 points should be the threshold, but the Ministry of Health declined this and it was set at 65. So if the Govt increased funding we could reduce the threshold. May be you could lobby for that?

I wish you all the best [some text removed at request of author].

With best wishes
[co-Author]

Hi [co-Author],

thank you for getting back in touch with me.

I appreciate and understand the explanation you have given, unfortunately I (biased as I may be!) think it completely and utterly unfair. I can see how in many situations, patients could distort the truth, however we have always been honest with our doctors at every step in this harrowing process.

Personally, I do not know how I should continue. Being told that I can't have a baby because of a piece of paper is awful, I imagine you have met many people over the years who "don't qualify" so you will understand the feelings I have.

I would just like to say that there was nothing I could have done to change this situation. As the partner who did not get the sterilisation treatment, I feel like my rights are being overlooked in this whole mess. But there is only so much money for treatment, I understand that. I just feel that perhaps the reasoning offered for denying funding in our individual case is flawed, and I know it will affect my life irreparably.

I guess I will go back to my MP and see if he has any useful suggestions. But honestly, I feel that I am at a loss. The system, while trying to be fair, is weighted against me. I do not see how I can proceed. If you have any suggestions, I would welcome them.

Once again, thank you for responding to my out-of-the-blue query.

Kind regards,
[Kaitake]

Dear [Kaitake], thank you for your enquiry.

The CPAC_from_FA is the current version used by all clinics in NZ. This one replaced the other one about 2006.
You have been scored correctly and have not been treated unfairly (compared to others in NZ). I hope the following will help you.

The fundamental issue with you is the “duration of infertility”. In couples where one partner is sterilised the duration can only start from the time you first see a specialist regarding your fertility. I note you scored 20 points for duration at the assessment on 23/7/10. But looking down further it looks as if Sept10 has been written in one column and Sept 2012 in another. All a bit confusing. So if indeed 23/7 was your first specialist assessment then you should have been scored a total of 45 points in 23 July 2010, 60 in July 2011 and 80 in July 2012. So after 3 years you will have access since your 80 points passes the 65 threshold.

There are a number of reasons why duration starts with the first specialist assessment. Firstly it is deemed to be the fairest way to make the system work for couples where no one has been sterilised compared to couples where someone has been sterilised. How can a couple where someone has been sterilised measure their ‘duration’? From the time you first met? Or the time you first considered wanting to have a family together? You could imagine lots of couples might present the clinic with information that would promote their chances of having immediate access. I hope you can see this interpretation would make it very unfair on other couples not sterilised. Imagine the fuss that would be created if you could have treatment straight away when someone with unexplained infertility had to wait 5 years! Secondly In my own research I found that in couples seeking treatment (where one had been sterilised) only 40% actually proceeded with treatment. This was in the days (not so long ago) when ALL cases were publicly funded.

I know it may seem unfair in your case but to us as clinicians trying to juggle limited funding for so many we all believe the 3 year duration seems about right.

The threshold to access all comes down to funding. If Govt funding was significantly higher then the threshold fo access may drop below 65. If the threshold was 60 then you would have funding one year after the first specialist assessment.

You will note in the CPAC_from_FA form that if you had a vas reversal in private and it failed then the duration would shorten to 2 years.

I hope this helps

Regards
[co-Author]

Hi [co-Author],

Please excuse me contacting you out of the blue like this, but I believe you may be able to help me.

My name is [Kaitake] and I live with my husband in [name of city]. We have been referred to the Hamilton branch of Fertility Associates to discuss IVF treatment, with ICSI. [Hubby] has a vasectomy from a previous marriage. I am 28, he is 46.

The issue we are facing is not a medical one so much, but rather a bureaucratic one. See, Fertility Associates has scored us using the CPAC form, and they say we have failed to meet the minimum score of 65 points for access to publicly funded fertility treatment.. We do not believe this to be accurate. We firmly believe that we should score a 90 (not a 60!), and that Fertility Associates may be using the form incorrectly to artificially lower our score by 30 points. To find out if this is indeed the case or not, I am searching for information about the CPAC form itself.

Without boring you with the details of our case, I was wondering if you would be willing to answer a couple of questions I have regarding the CPAC form?

I have a copy of the 2001 CPAC form (which I have attached: Gynaecology-infertility-CPAC.pdf). I gained this copy from the Bay of Plenty DHB's website <http://www.bopdhb.govt.nz/PatientInfo/PDFs/CPAC/Gynaecology-infertility-CPAC.pdf> , and phoned them to check if it was up-to-date. Their administrator assured me it was indeed up to date. Since you were on the advising board tasked with developing the CPAC form, can you tell me if this is indeed the most up to date version of this form?
The second attached file (CPAC_from_FA.jpg) I received this week when I requested all my case notes from Fertility Associates Hamilton. I have noted that this form looks a lot different from the ones I saw both in your document Access to Infertility Services: development of priority criteria: a consultation document, and the PDF on the BOPDHB website, where I retrieved the first form I mentioned above. From reading the footer, I can tell that the form Fertility Associates used was in fact authored by the clinic manager of their Hamilton branch, and authorised by another member of their staff. I am worried that Fertility Associates is either using the wrong version of the form, and/or using it incorrectly. In your opinion, is the form which Fertility Associates have used to determine our score the correct form? Do you think they used it in the spirit of the consultation document you helped to write?
If there is a later version of the CPAC form, are you able to send me a copy?
Is there anywhere I may access a copy of the guidelines that accompany the latest CPAC form?
I know that in cases on unexplained infertility, a waiting period of 3 years is required before patients can access funding for infertility treatment (during which time it is hoped that a natural pregnancy will occur). Fertility Associates is telling us that because Kerry is sterilised, that we also need to wait for those 3 years. This makes no sense to us as obviously a natural pregnancy cannot occur. They say that we lose points (-30 points) on the CPAC form because if one partner is sterilised, then the start of the "Duration of Infertilty" question is taken as being the first time the couple sought medical help. Are you aware if this is true or not?

I have cc'd this email to my diabetes endocrinologist who has been helping me fight this unfair treatment by the fertility clinic. As you can imagine, this is a horrible situation to be in, and I am always looking for practical ways to advance our case.

Thank you in advance for your time, please know that I really appreciate it.

If you would like to know more about our experiences, I have been keeping a blog for the last year and a half. You are welcome to read it here: http://kaitake.blogspot.com

Kind Regards,
[Kaitake]

Now you see the sort of emailing I get up to at all hours of the day and night. I so thought I had it. But it's back to square one. The current facts of the matter are that we will have to wait a further 2 years before we are eligible to go onto an 18 month waiting list for the fertility treatment we need. Might as well be a million years. Sob. I am empty. Life is on hold.

[Note: the "co-Author" requested that these emails be edited so as not to reveal his identity. I had originally believed naming him was OK, as anyone with half an ounce of brains can easily figure out his name by Googling the name of the report. Duh. Sigh. Anyways, this mildly-bothersome censorship has been done as soon as I was notified that there may be a problem with it - as being a nice person I had never intended to cause an issue for this person. But if you are a patient and would like assistance, I will gladly provide it as best I can, as I believe that fertility patients in NZ are too easily left out in the cold and treated like second-class citizens. :( ]