I am writing to you as a concerned resident of xxx., NSW.
The proposed 'Health Insurance Amendment (Safety Net) Bill 2015' has come to my attention as something which is of vast importance to the local and the national community, and I wanted to voice my worries to you, as my local member.
My name is xxx, and I have struggled with infertility for many years now. Despite being 31 years of age - which is still technically "young" in IVF land - my husband and I have been trying to expand our family since 2010. For medical reasons, we require the help of IVF to conceive, and while coming to terms with this was tough in itself, we considered ourselves extremely lucky to live in a country where we were assisted financially with our endeavours.
We are young, well, and healthy. We are well educated, tax-paying individuals who have thankfully never needed to utilise the system in any way, shape or form - until now. How crushing it is to have the ONE initiative that we actually benefit from, taken away - particularly when it comes to matters of family planning.
If you do go on to read the many articles about this proposed amendment, I encourage you to read the comments. They are so, so varied. They range from folks like myself, who are struggling to make sense of this medical journey and so desperate to start a family. Then there are those from others, who shoot us down, tell us that we don't deserve to have a family, or that we should just 'accept that we weren't meant to have children' and move on.
I find this appalling, from a mental health perspective - what a thing to say to someone who is already mid-way through a heart-wrenching journey.
I realise that as a couple, my husband & I are not important in the grand scheme of things. Parliament doesn't care about the needs of one couple, or about the overwhelming emotions that come along with infertility. But I want to be a voice, for a community that is often silent (due to shame, embarrassment, grief, or a multitude of other reasons) because if we don't speak out, we won't be heard.
The children we are trying so desperately to have, are going to be the politicians, the farmers, the tech-gurus, the lawyers of the future. They will be hard-working individuals, with strong family backgrounds pushing them to be whoever they want to be, and to provide for Australia in whatever way they deem fit. And they will be so loved.
We are the lucky ones.
We have a daughter, a fiesty, spirited 2.5 year old, who was born after several rounds of IVF back in 2012. Without the help of the Safety Net system, we could never have afforded to utilise IVF, in even the cheapest of clinics. She is here, alive, throwing a temper tantrum as we speak, because of this great country. She's the reason this scheme needs to carry on - to give every family the gift of a child.
But we are also the unlucky ones.
The ones who have been trying desperately to add to our family since 2013. The ones who have spent thousands out-of-pocket, above the Safety Net, to continue doing cycle after cycle of IVF. The ones who have suffered multiple crushing miscarriages, and who will go on fighting until they have given it everything they've got, because having a family is so important to us. It would be devastating to have to give up that dream, simply because of finances.
Please consider making this a priority to look into.
This amendment affects real people, with real stories, and real hopes & dreams.
Thank you so much for your time.
Let me refresh your memory of the miscarriage from hell.
My beta levels were 9 on November 10th.
My beta levels were 22 on November 17th.
My beta levels were 25 on November 24th.
Still. Fucking. Pregnant.
Referral is coming for a scan to see whether/where there is retained products of conception (what a lovely term) and whether or not I'll need to do a D&C again, or if I will just be stuck in this endless monotony of waiting around.
I now officially hate everyone and everything and most especially my body, who is utterly useless.
A shitty end to a shitty year. :(
I've always prided myself in 'being strong' throughout this whole ordeal, even on the days where I felt like I was failing at keeping it all together. For people to tell me that they thought I was strong, that I was brave, that I was getting by; it helped get me through some really, really hard times.
Secondary infertility is tough, in that you just can't fall apart - my whole focus has been trying hard to make sure that my toddler is happy and content, and doesn't know the struggle that we're going through on a daily basis.
I had gotten so used to putting on a brave face and trying to keep it all together, that it became second nature to keep on keeping on... until it got too hard. When the anxiety started echoing into everyday things, spilling out into the 'real world', when things just seemed to be too low, too often. It was time.
Throughout the last few years, I've spoken with psychologists and with therapists/counsellors when the need has arisen - especially during the tough times of infertility. I recognised the signs recently, and decided to take some action.
It's hard admitting that things aren't right with you. It's hard, because I feel like a failure... like this has beaten me, when it's so far from the truth & I am not ready to give up yet. But while I still have the fight in me, I've also got to appreciate that situations have become challenging, and I need some assistance working through it all.
Does it make me less strong? Maybe.
But I'm trying to look at it in a different way... that it makes me STRONGER, because I know myself, I know my limits, I know that this is temporary, and I know it'll help make me a better mum, wife, daughter, and infertility warrior in the long run.
It's one thing to be impatiently waiting for your hcg levels to get back to baseline, so you can keep going. It's another thing to have them go UP again, and freak you right out.
My beta levels were 9 on November 10th.
The bleeding was tailing off at this point, so we decided to wait a full week to let the miscarriage finish, and re-test again.
My beta levels were 22 on November 17th.
I automatically went into panic mode, assuming the worst - this can't be a good thing? The bleeding has been completely gone for almost the full week. I have no cramps, signs, symptoms. Why would it go up?
My first thought is retained products of conception, because the numbers are too low at 22 to be an ectopic. I asked the clinic for their thoughts and they basically said I should wait it out a week and see what happens.
Of course, that doesn't sit well with me... and I will probably spend the next six days with my stomach in knots. I'm scared, you guys. And I'm so, so frustrated. We were supposed to be baseline by now, we were supposed to be moving ahead with one last IVF cycle before the Christmas clinic closures. Instead, we're stuck here, with potentially very bad news, and an extremely slim chance of being able to try again next month.
Why does this keep happening? One thing after the other... it's just ridiculous.
I've been sitting and stewing on an issue for almost a week now. It's a big one, and one that's going to be affecting Australian couples who are infertile and turning towards IVF in the near future.
If you'd like to read about it, please follow this link. In summary: The government is planning to cut funding to fertility treatment, thus increasing the out of pocket costs for IVF treatment, as well as reducing the current public health rebates.
Now, before I begin, let me be the first to say something;
I AM SO GRATEFUL FOR MY DAUGHTER.
I've said it before, and I'll say it again every day for the rest of my life... but I feel like I need to reiterate this before I begin this tirade, because I'm sure that folks will be quick to remind me of how lucky I am to have her (I KNOW) and that I should consider myself blessed to have one child (I KNOW) or that I'm even able to access IVF at all (I KNOW) ... so there, it is.
So let's get back to the issue at hand. Do I have issues with this policy changing, as of January 1st? Absolutely. This is one which will affect us directly - and as a couple who are already using a more 'budget' clinic, it leaves our options rather limited. We can't move somewhere more affordable, or swap clinics again - there simply isn't anywhere else to go.
As it is, we've spent thousands of dollars on IVF cycles and additional medications that go along with them. The barely covered specialist appointments, the additional bloodwork and genetic testing that isn't covered by any rebates at all, the miscarriage procedures & pathology - add these in to our overall cycle costs for all of our fresh and frozen rounds of IVF, and it adds up. So much so that I don't even want to tally it all, because the figures will be terrifying.. and that's WITH the help of rebates. I have friends using the bigger clinics here, and their out of pocket costs are even more staggering.
People seem to think that with IVF being on the Medicare system, that means that we pay nothing. I don't think they realise that we are out of pocket every single time we attempt a cycle, whether it works or not. For each of my freeze all cycles, cycles we didn't even get to transfer an embryo, we still paid out of pocket... for not even a shot at a pregnancy. Yes, we're lucky enough to get partial subsidies from the public health system, but we are STILL paying... and with no guarantee!
The comments on these articles are heartbreaking.
I'm sure they are spoken flippantly by folks who either haven't dealt with infertilty themselves, or haven't known anyone personally who is going through all of this... but the ignorance astounds me.
Realise that you weren't meant to have children, accept it and move on.
Stop using tax payers dollars, just pay for it yourself.
You don't deserve special financial help because you're female.
Why should you be entitled to have children that are funded by the rest of us?
Did I mention just adopt?
You can call me oversensitive, and tell me to "just deal" with my issues regarding infertility - and I won't debate you. Just ask the multitude of counsellors we've seen over the years, and are seeing now. Trust me, we're dealing with it. Just getting through each day of feeling the disappointment and overwhelming sadness that is infertility and loss, that's me dealing with it.
Infertility isn't a medical condition, you say? Children are a choice? Go ahead and talk to my very concerned GP and psychologist, who are working with me on strategies to deal with the anxiety and depression that have now taken hold, after spending countless years and dollars trying to conceive. Not having more children is a choice we can't accept just yet - not until we've given it literally everything we've got. Some folks don't even get that chance.
As for people complaining that people take advantage of the system and use IVF too many times - are you serious? Do you think we WANT to be doing this over and over again? Ask any woman, or couple, who are going through this kind of treatment - we all want this part over with. We're talking about invasive medical procedures, coupled with profound emotional disappointment and physical repercussions... we'd LOVE it if it worked the first time. Reality is, it doesn't work that way.
I'd like to invite these folks who show no sympathy for infertile couples to do some research on adoption in Australia.
We have virtually no systems in place for adoption here. Fostering, yes. Short term care, yes. International adoption? Not even a remote possibility, unless you have tens of thousands of dollars and a willingness to wait for years - with no guarantee of a successful adoption. Once again, I put it to you: do you think that the majority of infertile couples wouldn't have considered this, or done the homework? Aside from coming to terms with the emotional loss of a biological child (not something to be taken lightly for a lot of folks), it becomes very quickly obvious that adoption is not an option for most, whether they would be happy going down that path or not. It's just not that simple.
My husband & I have been infertile since our 20's. We have medical conditions that are the cause for our infertility, and we have no genetic reasons so far to explain our miscarriages, despite plenty of testing. We have not "put off" having children because we have other, more important things in life. We have been together since we were 18/19, and are very happily married as we speak - and all we ever wanted was a family to call our own. We are STILL young, fertility wise - 31/33 as of this moment. We work hard, we save hard, we limit our spending and don't do fancy things... because we are sensible, we don't get government hand-outs, and we are putting every cent we have towards expanding our family.
Am I bitter because I can't have children on my own? You're damn right. What I wouldn't give to be able to simply plan for a pregnancy, have a little lovin' and pop out a baby like seemingly everyone else on the planet.
Here's the thing; the public system and safety net funds all sorts of conditions and treatments. Do I complain, because my "tax payer dollars" pay for a lung transplant, or cancer treatment, for someone who CHOSE to smoke and developed a medical condition? Do I complain, because my "tax payer dollars" are helping someone have a knee replacement because they CHOSE to run marathons and have injured themselves? Absolutely not! Because health care is something that should be available for all of us who are living, working & contributing to Australia's future.
And really.. do they think that we're not tax payers ourselves? We have worked and paid our taxes our entire lives, just like everyone else... so when we need to utilise the system for the first time, why should we have that option taken away from us?
This policy change scares me. As if IVF and infertility treatment wasn't hard enough to deal with from an emotional perspective, the thought that we might have to stop because of finances.. well, it's a real kick in the guts. It makes me think of others who aren't so lucky, or who haven't been able to try for their dream of having a family; places where there is no coverage what-so-ever... and it makes me angry. Australia is a place that is special to me, and I've always been grateful for its public system and the way it supports its citizens - but now, it just leaves me filled with dread.
IVF is not a choice we make lightly. It's not a go-to for people who are lazy, or who leave it too late to have children, or for folks who want designer babies. I just wish people would stop being so quick to judge, and to have a little compassion for those of us who are unlucky enough to have this burden on our shoulders.
Without access to IVF, we wouldn't have our daughter. This amazingly stubborn, strong-willed, pocket rocket of a child, who brings us so much joy. I can't fathom life without her, and I can't fathom why folks wouldn't want others to experience the happiness that she has brought us.
And that's all I have to say about that.
My beta levels were down to 53 on November 2nd.
They dropped to 19 on November 6th.
They're still 9 today on November 10th.
More bloods in a week. I am a human pincushion right now, and not even for a fun reason.
Bloody fucking hell, the universe must really hate us. It just needs to get < 5 for me to start a new cycle, but no, apparently I can't even miscarry a pregnancy properly!
So here we are... still stuck in this limbo. Fun times! Somebody pour me a wine.
Levels have started dropping, so it's time to stop all meds & wait for the inevitable.
Just when I was starting to hope. Another one gone, just like that. How did we get here?
I am just so utterly sad.
Today is 17dp4dt - or 21dpo - or 5 weeks pregnant.
Obviously my numbers don't match up to ANY of those figures, but here we are. Limbo!
I've managed to wrangle my blood test forward a day, so it's tomorrow now instead of Tuesday. We'll hopefully know with a little more clarity, and it's no good dragging things out any longer than we need to.
I feel pregnant. Queasy, off foods, hot flashes, headaches, exhausted. I'm still on all the meds - oestrogen & progesterone - so yes, it's very likely that it's more to do with them than it is my super low hcg hormones.
I'm still peeing on sticks, because it feels like the one thing I can control at this point... and they are tearing my heart out, because they're telling a story that is likely going to be shattered by tomorrow's blood test results.
These results were from Friday and Saturday, and they appear to be darkening. What a tease, right?
Ah, well. Not much else I can do but wait and continue praying for a miracle, even if the odds are slim.
Sunday, 1 November 2015
2 Comments • Labels: Baby #4 (m/c), Blah Blah PCOS, Chemical Pregnancy, FET, HRT, Infertility, IVF, Loss, Miscarriage, New Clinic, Not Pregnant, Programmed, Progynova, Round #5, Trying for Baby #4