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.

If all goes according to plan...

...I will be installing my artwork tomorrow. I PROMISE to post up some photos soon!

I've made five posters, all hand drawn. I haven't done so much "manual" graphic design work for about 6 years, so now when I look at the plain white sheet of paper I see spots! haha. Eyes are getting pretty tired. That mild headache I mentioned yesterday is still here, and I think it's just a combination of eye strain and naughty hayfever medication being a monkey.

Hubby and I have just been for a lovely walk along the seaside walkway here in town. He made a wonderful steak dinner, and then we did the dishes together :) Awwwww :)

Finishing off my drawings this week has been hard, not only because I started to get a little impatient (I'm used to working in Adobe Illustrator software, so goin' old skool with pen and paper seems to take forever!), but because our kitchen table looks straight into the neighbour's backyard. And they have two little girls, toddlers, and all morning when I'm trying to work I hear them laughing or crying or eating dirt or chasing their kitten or whatever, and it it just so hard to work while that constant reminder is there. No. You can't have kids unless you either a) wait for 3 years or b) stump up the cash for private IVF. Bah.

I can't seem to find a "healthy" focus in my life right now. Every second thought is about either how we could have a baby, or what I will do if we can't. Actually, I also think about how I should stop from going MAD because of how I'm thinking! Seriously, it's getting me mighty depressed, made worse by the fact that I don't really fell comfortable talking about it with anyone. No one wants to hear me talk about this. It's not happy conversation. And a talk won't fix it so why bother? I have thought on a couple of occasions that perhaps I should consult a counsellor. And then I go and buy a lotto ticket instead, as I see that as being slightly more practical.

Yesterday I saw 3 baby-bump-bellies, 2 strollers, and had to work through the neighbours having what was practically an at-home creche for 3 - 4 babies. I just can't think of anything else. It is driving me insane. I can't be happy. Even out on our lovely walk, it was all going well when we met eldest step-son with a goodly-chunk of his family out also for a walk. Nice to see them, yes. Did it remind me that hubby already has kids, and that I am the only "parent" of his kids (they have four: mum, step-dad, dad, step-mum) who isn't actually a bona-fide parent?

In other, slightly related news/ramblings, I got the quote back for doing over the back garden. It's way too expensive, about double what I was willing to part with. So maybe we will look at doing it ourselves. But honestly, the first thought when I opened the quote was "ok, so I can't have that either, I can't have any of my dreams!" I know, a bit melo-dramantic, sorry! But I have my good days and my bad days. Days where I see a bazillion kid-related things are tough. I just want to shout at them "stop bloody torturing me!" Other days it's almost like I'm normal, pre-infertility label.

Yeah, so I began thinking, if I can look at spending money on landscaping, why not put some serious effort into saving up for IVF myself? I just reapplied for my teaching job, for next year, and I'm pretty sure I will get it. And it pays not too bad, so I will start saving like mad and living like a pauper. hehe, we'll see. Really, 11K would stretch us. We would have enough for treatment, but no money to feed/clothe a baby afterwards! :P

I have not heard back from nzfertility.org (could be because their site is down, perhaps?). A while back I wrote a letter which they said they would pass on to the clinic that treated us badly. Maybe after writing this post I will email them and see what's happening. Last time I spoke to the nice ladies there, they seemed to understand, and be sympathetic to our case.

I just feel like I now have no purpose in life. Hubby is much older, I love him, but I need to know that when I'm old, I have kids of my own to look after me. I really don't want to be alone in this world. And I don't want to miss out on being a mum, being a grand-mother, seeing my kids take their first steps, or burp all over me, or skin their knees and need a hug. From their mum: ME! I hate to think that my life is diverging from it's intended path, from my dreams, from what I always thought it would be. I know some people actively choose not to have kids. That's fine. But I have made the discovery that I do want kids badly, so not being able to fulfill that is really hard to deal with. Way harder than anything I've ever faced before, as I have to face it every day. Babies are everywhere in the media, and in town, and the step-kids come every second weekend so I can't even escape to my own home. :(

Sorry to be such a downer, but I'm stuck. I feel I have no direction in my life, and the little goals I'm setting myself just aren't cutting it. Once upon a time something like an exhibition would have ruled my life for months, I would have poured my heart and soul into it. Now, I just feel I have nothing to give. I feel empty because I'm just drifting. Don't get me wrong, my life is very comfortable. There is just no aim to what I do. And that scares me. I don't want to waste life, because I've fought so hard to be healthy and happy up til now.

Anyway, pictures for you tomorrow, I promise. :)

A surprising calm

I've been immersed in my work lately. No time to spend on my poor neglected blog. No time to tend the garden. Not much exercise. But I am enjoying my new job - it's amazing compared to the last one! I feel like I have a bit of control, a bit of respect, and a bit of joy in my work now. Teaching is hard work, I never doubted that, but so far it seems to be right up my alley. :)

Last weekend hubby and I traveled to a design conference in another (bigger) city. It was cool to get out of town for a few days and just be somewhere completely different. It has given me the creative kick I needed to start making art again.

While we were there, I also bought a few books (I LOOOOOVE books!), and so far this one has really captured my attention:

The Art of Choosing is written by Sheena Iyengar, a blind Sikh psychologist who has spent her career studying how people make decisions. It's a fascinating read and I highly recommend it. BTW, I choose this book because it had jellybeans on the cover, and because I had a cat called Sheena when I still lived with the parents. hehe :P

So how is everything else going? Well, surprisingly well, as the title of this post suggests. I've only had one serious cry/wail about our situation since my last blog post, so I will take that as a sign that I am coping quite nicely. On the otherhand, I am slighlty concerned that I'm not more upset now. I worry I might be bottling stuff up and just not dealing with it. I still notice babies and baby-related-stuff everywhere. At the cafe at lunch today I was fine, then a grand-dad came in with an infant in a car-capsule, and I noticed there was a "breast is best" pro-breastfeeding sign on the window. Just can't escape it. It's annoying me, but it's not driving me totally insane. I will take that small blessing! :P

One of my colleagues got an email yesterday which tested my "cover" strongly. (By cover, I mean that I've not told anyone at my new job what we've just gone through in regards to infertility and being disqualified for public IVF funding.) She has a friend in the UK who had been complaining for months about feeling tired and lethargic. It was getting worse. She had been to her doctor several times and nothing was helping. They couldn't figure out what was wrong. Then she mentioned the swollen ankles. Doctor decided to do a pregnancy test.... (she was on the pill) ...and lo and behold, it's a BFP! Want to know the amazing part? She's 7 months! WTF? How in holy hell could you not notice that! My colleague went to great pains to explain that her preggers-friend was a university-trained intellectual, not just some dumb-ass. But 7 months!? I asked the first question you ask when you hear a story like this: is she, ah.... is she a large lady? No. Slim. Where could she hide it? I dunno.... so now I know of a true case of this happening. Really happening. Only seen it in trashy womens mags and on telly before. But it happens in the real world. So that made for an interesting few minutes where I had to sit and try and compose myself, right before a class too! Sigh.

I can't remember if I told you before, but my one ray of hope was an organisation called Fertility NZ. I emailed them frantically, hoping that they could help somehow. Or at least explain what had happened. The wonderful ladies there have called me twice over the past couple of weeks with words to the effect that:

• this sort of terrible mess happens regularly to NZ couples
• they get a couple of complaints from desperate women every week
• no I am not going mad
• yes those doctors did behave poorly
• no there's not a helluva lot we can do about it
• yes they want our help to stop this crap happening to other people
• but we will contact the fertility clinic on our behalf to get us some answers

So I wrote a letter for FertilityNZ to pass to the fertility clinic:

Currently, we are still waiting for a response from the fertility clinic. I hope they realise that this sort of treatment is unacceptable. I hope they find some common decency to re-score our case in a fair and decent way. I hope we are given a chance.

The lady from FertilityNZ did make me realise that we are not at a total loss... under the current law we WILL qualify for funding in Sept 2012 - still a while away, but possible. It feels like forever to wait and I really don't want to. But it's the only thing I can do at the moment. At least I'm not too close to 40yrs to wait (funding is also immediately cut once the woman turns 40). So that is another small blessing.

She also told me that they are actually trying to get the law changed in New Zealand, because it is so unfair to so many couples. She described how many folks get caught in the "time trap" - waiting, waiting, waiting until they qualify for funding. :(

So now you know why the blog's gone a bit quiet. There is nothing much interesting to report. Which has meant I've been rather calm. All this activity and planning, appointments and scans, tests and pills. It's all just stopped. I can now go back and do some gardening. Make some art. Focus on my design projects. It feels a bit like my brain is on holiday from the most grueling job in the world. I'm sad that it all didn't go as planned. But I'm so tired, and I don't see many options to push any further. I'm not giving up, but I'm having a rest. :)

I may have been quiet, but I haven't fallen off the map completely!

Yep, took a two week break from blogging, from thinking, from doing much at all except throwing myself into my new job - which I love by the way! I just want to let you all know that I'm ok, kind of. :P

Thank you to everyone for your kind thoughts and emails. It's helped more than you can know.

After getting the news that apparently we would not be eligible for publicly-funded IVF treatment we didn't know what to do at first. "Grieve" seemed to be the natural response. Then get bloody angry!

But then I remembered a New Zealand organisation called Fertility NZ. They offer advice, advocacy, education, information, and support for those New Zealanders affected by infertility. I had nowhere else to turn, so I wrote them an email. It's not everyday I spill my most private thoughts and fears to a stranger on the end of an email address, but I seriously felt like I was out of options.

Less than two hours later, a super-lovely woman who shall be called S emailed back asking for more information. I had to wait two days to get a lunch hour long enough, but I called her and we spoke for an hour. It was the best conversation - helped me to realise that I'm not crazy and what has happened to us is not right. Not right at all. (If you want the details, please read here and here.)

S advised us to get together a list of questions to put to the fertility clinic, to try and figure out this whole mess. So I've been doing that. And working a demanding new teaching job, and doing freelance web design work on top of all that. Trust me, my brain is full!

On the diabetes front, things have been interesting. Take a look at the last two weeks numbers:

Breakfast numbers under 10mmol/L. Woohoo!

Check out those breakfast numbers! Two whole weeks and only one result above 10mmol/L. I don't think that has ever happened to me in 22 years of blood testing! :) Woohoo! And why did it occur? Well, I have decided it's because I'm not stressed about my old job anymore. I can't believe that I stayed there, and actually did myself physical damage. Well, now I have proof - stress is bad for you. Duh. (Umm, yes, in case you were wondering, that is a smudge of blood in the top right corner. Eww)

From my desk at my new work, here's a 11.1mmol/L reading, next to my log book, which got all smeared with blood when I failed to notice my finger was bleeding. Oh yeah, and I was teaching a class at the time. So that was interesting: I had to stop and fossick around for a tissue! haha :P My students won't forget that class in a hurry!

I hate these stupid people on the cover.

So that's the rough guide to my last couple of weeks. Better blood sugars, stupid fertility clinic, and working to 10pm most nights to write 4x courses, so I can teach them the following day.

Oh, and I had an appointment with my diabetes nurse educator. You know, the one who always makes me cry. Well, surprisingly, it went very well. She saw my new numbers, my new insulin calculator on my iPhone, my new carb-ratios, and my new carb-counting and proclaimed me to be doing very well. Actual praise. Wow! :)