Visit to see an HDC advocate

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:

1. Write letters to each of the health care providers who have given me/us bad service throughout this process.
2. Send my story to the Health and Disability Commissioner himself.
3. 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

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

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

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

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

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

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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