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

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

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

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

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

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

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

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

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

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

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

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

Some grumpy business

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

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

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

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!

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

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.