A little thing to smile or laugh about

I haven't got any photos to show you, sorry, but: I sewed a couple of new pillowcases for The Kid's classroom. (They look pretty good!)

The previous pillowcases had broken zips and were worn down, so I just volunteered to make new ones. An easy job, I thought.

Well, now the downside has emerged, the teacher told me with a laugh :). Because turns out, after the new colorful pillows landed on the sofa, some of The Kid's classmates started pointing out that the rest of the pillows looked very dirty and worn out in comparison :D.

And now the teacher has taken all the others home to wash and line-dry in the sun, hoping to make them look better, too.

Funny.

Strawberries are ready, t-shirt weather

This spring has been spectacular. I mean, really, spectacular!

Looking at http://www.metservice.com/towns-cities/invercargill just now
We are living at the Southern-most tip of the mainland New Zealand - a place notorious for its weather. This spring, however, we are eating strawberries in November. A couple more weeks and tomatoes will be ready.

I did not know that, but I'm glad I learned it

I'm sorry, this is harsh but... please listen to David Marr - View from Australia (!) and tell me what he says within the first 5 minutes is not insane?!?

www.radionz.co.nz/national/programmes/saturday/audio/2018623046/david-marr-view-from-australia

Jesus. Australia, seriously.

Geesh!

The bubble bonanza

What happens when someone pours detergent into the water of a public playground pool?

Bubbles. Lots of bubbles.












Also, visited a couple of other places: greenhouses of the central park. A fire service museum. A busy weekend, basically.




On architecture, and Invercargill being awesome

I've been thinking about architecture today - but not in a fancy oh-look-how-stylish-that-looks! kind of way (which I think architecture can get quite a lot of). Rather, I've been thinking about its functionality.

I study quantity surveying (with a touch of architectural drafting on the side), so over time I become good with numbers, project management and budgets. I also develop a skill of reading architectural paperwork with little trouble. Due to New Zealand being in somewhat of a housing crisis at the moment, it means I have fairly good prospects in terms of both employment and income in the future, especially if I do my craft well.

But personal benefits aside, I feel I have a role to play in the future of social housing and community development, and passion for it; which kind of brings me back from where I started this blog post - architecture.

I have two pet peeves when it comes to social housing - or building projects in general when they're funded by community-owned "public" money.

One is fancy design to the detriment of building's functionality.

The other is reducing construction cost to the detriment of building's functionality.

I'll give you two examples. First, in Invercargill recently a new office hub was built (for public money - it was a council investment) and they had an unusually angled roof which, during construction, started having leakage problems. It was one of those instances where I listened to the stories of the construction process and thought to myself, "Man, that's not efficient use of public money." I mean... I get the need to try to make the building look "nice". I do get that.

But not when that "niceness" then comes at a price of having to spend money on fixing gutters because something that looked doable on an architectural drawing did not, in fact, turn out doable on an actual building site, and then people spent hours, and hours, and hours fixing it.

Those hours cost.

Another example is social housing project recently completed in another New Zealand town where bedrooms had... one power outlet each and I thought to myself, "That's not reasonable." People don't use a single power plug in a bedroom each any more - more likely, they are going to need to use five. Six.

Not one.

Putting a single plug in a bedroom means almost guaranteeing that people are going to set up extension cords upon extension cords to plug in all their bedside lamps and tech devices and whatnot - and lowering their fire safety as a result. The council probably saved a little in the process of that construction but... it's not worth it. It's not the place to save money from.

And so, when yesterday I had a discussion with an Invercargill's gymnastics club who are hoping to put up a new purpose-built gym for their young gymnasts in, maybe, a decade from now (my kids are among them), I told them how I feel such a passion for being involved in such community projects. With the skills I am developing I feel I can have a very strong impact in keeping the projects, one, close to their intended budgets through good project management and, secondly, just making sure that public money goes a good distance because the better we built the public projects, the more money there is to go around for other public projects.

That, as a result, impacts on people's wellbeing.

And, man!, do I feel like I should just create a website called Invercargill Is Awesome! because the longer I am living here, the more I am (genuinely!) thinking that, man!, Invercargill really is awesome.

Just awesome.

A good, family-oriented, wellbeing-centred, park-rich, public-space-interested living environment.

Invercargill is awesome.

Here we go!

Today I am starting progesterone therapy. Looking forward to seeing what it does!

Edited to add: holy-f*ck-o-moly, the first two tablets and the subsequent three hours were... not good, let's put it this way. It was interesting.

I'll keep you posted.

She can bend if she wants to

A couple of months old, The Girlie used to have a habit of sucking her toes.


I thought the ability would eventually pass. And it may - but it hasn't yet.

The Girlie can still suck her toes at will. Yesterday, for example: I put her to bed because she was grizzly and tired, but she was convinced that she wasn't yet ready for sleep. Out of defiance she curled herself up in bed, stuck her toe in her mouth and started sucking on it, grumpily looking at me as if to say, "Hah, you may put me to bed, but you can't make me stop this!"

The girl sure has got... determination.

...and lots of other characteristics that go with determination.

Yeah, that about sums it up.

Greenhouse at the moment

It's pretty cool to look at the greenhouse now...



...because six weeks ago it looked like this:


#growingstuff

Kilmock Bush walk

Kilmock Bush is an awesome 2.3 km loop to be done with kids, dogs or just a late evening sunset walk - the choice is yours.

It's listed as number 15 on Invercargill's walking track map, icc.govt.nz/wp-content/uploads/2015/03/Parks-Short-Walks-2016.pdf, and I highly recommend it. Really.










I don't want to any more

I'm getting tired of doing health research. I really am.

Maybe it's temporary - to be honest, it probably is - but I am tired nevertheless. As much as it's cool to know things, and understand things, I'm getting to a point where, as a new thing pops up, I think, "Not again..."

Over ten years ago when I discovered I had autoimmune hypothyroidism, I had to learn about what thyroids do, and what happens as a result of their function. Then The Kid was born and I learned about children's development. With The Girlie, I had gestational diabetes and learned about insulin, ketones. At the same time my epilepsy was finally confirmed and I started to learn about that, too.

Now I'm at a point where I understand that all of this stuff... it's related. Just as a human body is a very complex system of interconnected hormones, changing one thing affects others.

Polycystic ovaries are connected to insulin resistance. Autoimmunity of hypothyroidism is, too. Depending on thyroid's work production of oestrogen and progesterone is affected - and as a result of those, epilepsy. (In my case, catamenial.) To keep down insulin resistance a ketogenic diet is suggested but as a result of that, cholesterol levels are high - except, cholesterol levels are also connected to hormones which are affected by carb consumption, and...

Basically, it's not possible to just look at one thing and not take into account what it does to others. The system is so complex and, in my case, likely genetic to a degree. As much as I applaud biodiversity and the process of evolution which results in our society being made up of such a diverse range of individuals, I also find it a pain in the hole that if I walk into an office of some health nurse, they look at my cholesterol levels and go, "Oh my god, don't drink full-fat milk! Eat margarine! Eat wholemeal bread!" But if that same food advice gets passed on to some dietician who specialises in diabetes management then they are going to say, "No, actually, healthy fats are good - they slow down glucose levels. Minimise pasta and bread. Drink full-fat milk, but supplement it with lots of vegetables!" A gynecologist may understand what my progesterone is up to and say that a certain birth control is advisable, but a neurologist also needs to understand how that birth control affects my seizures.

Basically, I'm in the middle of that... truckload of medical information, and as much as I appreciate knowing things, sometimes I'm at a point where I look at it and think, "No, I don't want to. I do no longer want to research how cholesterol levels are tied into insulin resistance and how that, in return, is linked into progesterone which can sometimes be turned into oestrogen and..."

Basically: I think you get the idea.

Tired.

The realities of parenthood

It takes my daughter 2 minutes to glue together a craft project. It then takes me 10 minutes to clean glue off items in the vicinity of that craft project.

Lately

Another part of Invercargill's central Queens park I really love: the stumpery.




My daughter's got style:


Also, my daughter practices tying knots on my shoes. It's taking a really long time now to put on shoes!


Another day, my son got an award at school. Incidentally, it was the same day that another class were celebrating their "pyjama day". Made for some memorable photos! :)

Grumpy at the people who designed my printer's user interface

Having bought a new computer I am in the process of "pairing it up" with our existing printer/scanner.

Whilst I'm at it, words you can frequently overhear me mutter start with "fu..", "sh.." and "piece of ..." because although the printer itself is "paired up" it is unavailable to actually print anything, and the scanning function just doesn't exist as far as my computer is aware.

Pairing it up with the laptop three years ago was an adventure on its own, and now doing it with a desktop it's not even an adventure - it's a grave ahead of my printer's ever-shortening lifespan.

And may I just say that people who created Canon's user interface and support system have done an awful job.

Seriously: awful. Menus are overwhelming and confusing, support articles even worse, forums full of people who are battling the same battles as I am - and after having spent three hours on trying to fix this f...ing thing I am thinking, I am never buying a Canon printer again. Ever.

My husband's definitely a Brit

The Man talking about a company he doesn't like: "They couldn't organise a piss-up in the brewery even if they owned the brewery and the beer was free."

Belonging in New Zealand

A new member to New Zealand's parliament, Kiritapu Allan, made her "maiden speech" today - her first time to speak up in the parliament.

In it she said how, dropping out of high school aged 16, she went to work full-time at KFC and her goal was to work in every KFC in New Zealand so she may see the world. Passing through Wellington though, she looked at the parliament building and thought, I kinda want to work there.

And now that's where she is: in New Zealand's parliament.

I listened to her speech and teared up.

***

Today I attended an assembly at The Kid's school (he was getting a prize today) and right at the beginning New Zealand's anthem was played, as usual.


However, today was the first time I heard it play and thought, it's kind of mine now.

I almost teared up thinking that, too, because... although on the wall amongst other flags an Estonian blue-black-white is hanging (the school puts up permanent flags for every multi-cultural child studying at the school), today I looked at the flag and thought, nah, this here is my home now.

Estonia is where I'm from, but New Zealand is where my home is.

It's been 8.5 years since I arrived in New Zealand.

Here we go!

Invercargill neurology has approved me for progesterone therapy. (!)

Starting from a couple of weeks from now, we are going to follow a protocol set out by a clinical trial in www.ncbi.nlm.nih.gov/pmc/articles/PMC3369508 (Neurology June 2012) and we are going to see if natural progesterone (instead of conventional anti-seizure drugs) will manage my C1 pattern catamenial epilepsy.

To me, having them agree on such an approach feels like a victory. It really does! I feel both gratitude and respect towards the doctors, and in equal measures, too.

This approach is not standard medical practice in New Zealand yet - or anywhere else in the world, as far as I can tell - but it has shown promising results in several clinical trials, so it's kind of on the edges of approved medical approaches where it's not yet taxpayer-publicly-funded, but it's allowed already; and over time, it will probably creep more into mainstream.

And, sure, we don't know if the treatment will work, yet - no-one knows until they start it - but we are giving it a go in an attempt to treat what causes my seizures rather than use drugs to manage my symptoms, which in my books in always the first preference to go for, and... it's wonderful, being able to do that.

Just really, really wonderful.

I'll keep you updated.

(200 mg natural progesterone three times a day on days 14-28 of a menstrual cycle)

Sometimes I wonder why I even check the news...

Just because: www.stuff.co.nz/world/americas/98620554/cyclist-who-flipped-donald-trumps-motorcade-the-finger-fired

Sounds about right

Yesterday an American correspondent was discussing the latest US shooting on the radio. A pattern has emerged, he said. Each time a shooting takes place, democrats ask for tougher gun laws. Republicans, meanwhile, ask to pray for the victims.

Reading Melina's birth story

Reading Melina's birth story I hardly even breathed. Slow and steady but tense, I kept reading her words and in my head, imagining my own labour with my own kid instead.

The labour with The Kid, mostly.

It is... therapeutic and at the same time a little damaging reading through someone's experience and recognising it as so similar to mine. Melina's description is breathtaking, www.thewildercoast.com/blog/2017/10/25/6elkn7usi0uly78co7nito2hli2rus , but still in my head, I was picturing mine.

***

Yesterday me and The Man were talking about birth control. I asked him if he had come any closer to deciding  to have "a snip" (what a word to describe it, isn't it?)

We've been talking about it on and off for... a while already, but yesterday the topic came up again because I'm somewhat getting to a point where I am squeezed for options. I've now had two separate IUDs "pop out" (part of the reason we even have The Girlie :P), so it's pretty clear I am somewhat incompatible with those.

I cannot use birth control that has eostrogen in it - it'd likely affect my epilepsy, and not in a nice way.

Hysterectomy is... a big thing. Too big, at this point, even.

...but if the neurologist comes onboard with trialling progesterone therapy to ease my epilepsy (I'll hear from him this week), I need to come up with SOMETHING, because in all likelihood the current progesterone-only birth control I'll need to come off it, and after that... there's not much left.

Which is why I asked The Man about the "snip".

***

It's a big decision, and I understand that. Deciding to go ahead he'll have to accept not only the medical risks associated with the procedure, but also know for sure that he'll be done with children.

And that's the emotional part.

To me, the decision is easy. I'm done. I neither want more, nor think I'm even suitable for having any more children, physically.

There are people who carry children easy, and birth them easy, too - but I'm not one of those people. I neither carry them well (in all likelihood any future pregnancies would involve heavy cases of diabetes) nor birth well. With The Kid, if we hadn't been in a country with a modern, well-resourced medical system, I know that chances are, the baby wouldn't have made it out alive and, maybe, neither would've the mother. Reading Melina's birth story just so fiercely reminded me of that.

With all of that in mind, I'm done. Mentally, I don't want any; physically, I don't think I should have any more - even financially I think we're done. I'm... grateful for the two I have, and that's it. Done.

But The Man, he has to make his own decisions.

...which I understand, and respect, but still I am starting to get to a point where it's becoming necessary to get his reproductive systems involved, too, because I am running out of options on my end.

***

The thing all of this reminds me of is... ten years ago. My God, do I feel I made the right decisions ten years ago!

Ten years ago I started to get to an understanding that I have a medical array of inter-related, mostly autoimmune health conditions. I knew that, in some likelihood, I would experience problems either conceiving children or carrying them to full term - if I ever decided to have children - and it's, basically, what drove my life decisions.

For one, I had to make up my own mind and decide that, actually, I did want children. And if the choice was either have them that early in life, or not have them at all - I'd rather have them early.

I wanted out of a relationship where the partner wasn't ready for children. I said honestly, even at the tender age of 23, that if I waited until he was ready and then found out I wasn't able any more - I'd probably never be able to live with that decision, or forgive it.

It's why, less than a week into meeting The Man, I said - again, honestly - that I would not use birth control. That being in a relationship with me, basically, meant that the possibility of children came with it - I wasn't interested in wasting time on relationships that weren't ready for children.

He found it an unusual pill to swallow, but lived up to it, and has since.

And it's why now, knowing what I know now, I am glad I made those decisions.

I have two children I am both happy and proud to have. They can both be pains-in-the-hole, just like I can be, sometimes, but they're mine and I love them. For all the inconvenience of having children before we had money or a home or residence permits - I'm glad I have them, because if the other option was to NOT have them... then, I wouldn't have taken that option.

Just like I thought at 23.

In saying all that, at this stage now, I am done.

***

It's interesting to write about all that because, in part, that's what I am writing in the evenings.

In May 2018 when I come to Estonia, a new edition of my book will be published and in it, a new chapter from New Zealand will be. It's where I will continue the story of what has happened to the girl that went to Alaska all those years ago, and what her life is like now.

It's also part of a book that I am writing with the help of Invercargill's writers' group. Unsigned by any publishing house yet, it's nevertheless a story which, I think, needs telling. And over time, will be.

***

Reading Melina's birth story reminded me of all that. Starting from the labour itself, to why I'm glad I even had the labour, to what I am writing about now.

I have finished all my exams and classes for this year. I have passed everything, high marks, and now I have a summer to work on writing instead, until next February, I will dive back into New Zealand's construction law and finances.

It's been a good year.

Learning about MS and immune responses

I took what feels like a break today. We visited the swimming pool in the morning - as we almost always do on Sundays - then straight from there headed for the farmers' market to get watercress, and via a small sidetrip to a cafe landed back home. A morning well spent.

In the afternoon, I tied up tomato plants in the greenhouse, pottered about the yard, then kids had a nap and I spent shameless two hours on the computer just reading, reading, reading.

Reading anything my heart desired.

I read people's blogs. I checked interesting radio interviews to listen to later. I wrote comments to stories I felt passionate about. I browsed - just looked around the internet for things that caught my attention, and soaked them in.

One of those things was an article about multiple sclerosis I am still analysing in my head. The original is up at www.stuff.co.nz/life-style/well-good/teach-me/98572168/young-female-and-incurable-why-more-women-than-ever-are-being-diagnosed-with-ms but beware - it's quite long, and not that intense throughout.

I learned, for example, that part of the reason why women are now so prone to developing multiple sclerosis is that they have children later in life. Professor Jeannette Lechner-Scott explains in the article:

"When the immune system switches on, women typically have a more exaggerated, pro-inflammatory process than men. Pregnancy, though, is protective.

"Our bodies have to go into a state of immune tolerance to allow an egg to implant and the foetus to grow. One important reason why autoimmunity is now higher in women is because we're generally getting pregnant for the first time later in life and having fewer children. If a woman has her first child early, and has lots of children, she is far less likely to develop MS."


She also explains why MS which, decades ago, tended to cluster in places which received little sunlight (Canada, Manchester, Tasmania), now pops up in places near the equator.

"Traditionally, in equatorial countries, which receive a lot of sunlight, MS incidence has been low; the further north or south, away from the equator, you travelled, the more MS you could expect to find.

This is because vitamin D, which the body manufactures in response to exposure to sunlight, is thought to be extremely protective in those people who are vulnerable. Saskatchewan, in western Canada, for instance, is an MS hot spot; so, too, is Manchester in the UK – and Tasmania.

But Lechner-Scott's Newcastle study is even more dramatic than the Tasmanian one, and her hypothesis is this: "In hot, sunny regions – like Newcastle, which has a beach culture – we're not spending as much time outside as we used to and, when we do go outside, we're covered up.

"In recent decades we've completely overdone the 'Slip, Slop, Slap'." We're failing to make sufficient vitamin D, in other words, because we're not exposing ourselves to enough UV light. The fact that more women are working – and staying indoors – also explains the deficiency."


And last, Professor George Jelinek from the University of Melbourne talks about diet:

""I think most authorities would agree MS is a very modern disease," he says. "We've only seen it on the planet for 200 years or thereabouts. Obviously, the genetic predisposition gradually developed over time and then environmental factors came into play that trigger it and worsen it. And principal among those, I think, judging from population level data, is diet.

"Japan is a beautiful demonstration of this. MS was virtually non-existent here, despite it being a long way from the equator. Dietary habits here were healthy for centuries: meat was very expensive and so the population ate fish, rice and vegetables.

"With the arrival of Western fast-food chains, though, which began towards the end of the last century, there's a rapidly increasing incidence of MS. We've already seen it in North America, Europe and Australia. Our animal fat consumption is very high and only a tiny portion of the population is eating the recommended daily intake of fruit and veg.""


I also read a couple of interesting articles on the topic of religious people vs atheists, and how they use their brains differently (explaining, basically, why some people feel the need for religion and others don't), but it's getting a bit late in the day and I am getting a bit too tired to actually explain it away and copy the relevant bits here, so... yeah, sorry.

Just poppin' in to say good night! :)

PS. But before I go, can I please leave you with something worthwhile to listen to: www.radionz.co.nz/national/programmes/saturday/audio/2018620409/tane-hunter-and-angus-hervey-future-crunch

Another way of putting it

The Girlie calls The Man's contact lenses "daddy's little bowls".

The way of putting it

The Man makes ginger tea with freshly squeezed lemon. The Kid tries some.

"What'd you think?" The Man asks.
"Tastes like fire juice," The Kid replies.

Fire juice. I like that :).

Prepping for medical appointments

I'm... okay, let's put it honestly: I'm sometimes a pain of a patient to deal with.

Depends on a doctor, too - some find it hard, others think I'm awesome.

I rarely come to a doctor's office wanting their advice - and their advice only! - with no personal input from myself. Rather, I come with a story of what needs fixing, thoughts I have on doing it and then want the doctor to tell me their ideas, so we can compare and together decide what's best. A sort of a co-op of medical decision-making, so to speak.

The same with The Kid. I've now, for the most part, figured out how the medical system works so we can tailor it to to our benefit.

For example: I've found that whenever I am dealing with officials from Ministry of Education or Ministry of Health, and the topic potentially has impact on our funding, I need to present them with the worst scenario possible.

Not, like, lie - but talk to them in terms of the worst symptoms or the worst behaviours possible; so when they allocate funding or waiting times, that's the information they go by.

And by the way: people in the ministry I have good personal relationships with, they agree with me. They, also, have said that as much as attaching labels and diagnoses to young children does not serve a good purpose, in terms of getting funding so help can be sought, it's exactly the way of doing it.

For me, personally, it means that when a booking clerk calls from the hospital and says, "Hey, I've got a neurology appointment that got cancelled for tomorrow. Would you be interested in taking it?" and I reply with audible excitement, "OH YES PLEASE!", when I come to the appointment, I'm not coming empty-handed.

I come with an A4 sheet of pre-worked-through thoughts (some sensitive information replaced with ####### symbols):

***

Catamenial epilepsy. Mostly (nocturnal onset) simple partial seizures.

BRIEF HISTORY

  • Started June 2012, indistinct symptoms took to calling “waves”. 
  • Epilepsy confirmed February 2014. (After first tonic-clonic in January 2014.)
  • Have had 3 tonic-clonic seizures: all nocturnal. January 2014, August 2014, August 2017.
  • Catamenial pattern appeared December 2015: perimenstrual C1 (“waves” within 3 days +/- of period starting). Occasionally light symptoms around ovulation: periovulatory C2.
  • Very accurate recognition of auras: consistent with C1 and C2 patterns.
MANAGING TECHNIQUES
  • Hydration. In April 2016 started trialling high amounts of water intake (3.5+ litres a day). Didn’t have a single symptom for 6 months! 
  • Preference towards LCHF/ketogenic foods (when practicable), especially mid-cycle and before period.
  • Supplementing with magnesium, zinc, iron and B6, but at lower levels than therapeutic, generally available dosages from pharmacies.
  • Progesterone-only birth control started October 2017. Pfizer Noriday (Norethisterone 350 mcg).
INTERESTED IN
  • Progesterone therapy. (Neurology June 2012 “Progesterone vs placebo therapy for women with epilepsy: A randomized clinical trial.”)
  • If need be, supplementing with low-dosage anti-epileptic drugs.
OTHER MEDICAL CONDITIONS
  • ######
  • Gestational diabetes. Familial history.
  • PCOS.
QUESTIONS
  • Am I experiencing falling progesterone levels? It’s consistent with onset of epilepsy and ######. (###### due to estrogen dominance.) Symptoms are gradually becoming more difficult to manage.
***

You see? That's what I mean. 

The point of such prep-work is not to march over the doctor's knowledge and responsibilities, but to get myself involved in it.

I write stuff on the paper down to references to medical journals, because I have now learned - from experience - that if I don't, then if the doctor is not aware of what I am talking about, he dismisses me as "having read some stuff off the internet".

Today, on the other hand, although the doctor was not familiar with the information, he could open up a Neurology magazine June 2012, track down dosage instructions from the clinical trial and then say that although he has not done that before, he is going to take that information home, read it, discuss it with his colleagues and get back to me next week.

It means that when he's taking my medical history, there isn't anything forgotten - even if I feel intimidated by a doctor's presence (because some, I have been), I can still just look down on the A4, read stuff out, and get everything out onto the appointment file that I am interested in.

And as a result of all that, I feel I am able to walk out of a time-limited appointment with a sense of accomplishment.

As much as I would love not doing it - I know that if I get scheduled 20 minutes once a year to see a neurologist, then if I want stuff done, that's the way of doing.

And, fortunately, some doctors think I am awesome.

Other think I'm a pain (I can live with that :)).

...but at least some think I am awesome.

Our home

It's the simple solutions of the first year, but... still.

The quiet evenings of the back yard
The busy middays of the back yard

The Girlie who, I think, by the time she's a teenager will know how to hold a hammer pretty well.

The potato patch

The hazelnut tree, Hazel, finally planted in the ground

Strawberries flowering. Even the currant The Dog ate most the buds off when we planted it, seems to have survived. Sure, it's about third of the size of other currant bushes but... it's alive.

Greenhouse residents up and coming

The apple tree

PS. Also, today I finished the last exam of my school year. The last time - this year - I sat behind the table studying construction law.


Can I please have an applause for that!