The long wait

I’m off all the hormones now, counting days and figuring out how to track ovulation. It does seem to involve a fair variety of things to lick, pee on, and other odd behaviour. Yesterday we picked up an ovulation tracking kit. We sat in the van outside the chemist reading all the instructions together and Rose asks me ‘so what method do you think you’ll use, peeing on the stick, or peeing into a cup and putting the stick in it?’ I attempt to explain with dignity that I have limited experience in peeing onto or into anything but shall practice.

Rose and I are desperately excited and also daunted about how challenging this could be and how long it could take. It’s kind of hard to be rational, I feel like I’m either going to pregnant the first month, or not for a year. I can’t make myself believe it might be, say, month 4. We’re preparing for a trial run of inseminating with our awesome donor in early December. We’re also going to get a blood test on day 21 of my cycle to double check I am ovulating.

Rose is sick again, her psoriasis makes her terribly vulnerable to these awful ear infections. Each time she uses antibiotics she’s at more risk of developing an antibiotic resistant strain of the bacteria. Apparently she’s also increasing her risk of knocking her skin bug balance out badly enough to wind up with a fungal infection in there too, which is what the doc reckons has happened this time. She started getting better after going onto the antibiotics then a day later went downhill badly. So her face and neck hurt like hell, her jaw is stiff, she’s weak and sleeps all the time. It’s kinda scary to be honest! I miss her when she’s like this. She slept over last night when the locum didn’t get to us until almost 1am, and I loved the way she reached out in her sleep or held my hand whenever I rolled over.

Everything’s become infused with this last glow… We talk about Christmas thinking it might be our last without kids, we have a lie in on Sunday mornings and tell each other we should soak this up while we can. And the possibility of months or years trying is something we try to adapt to, but every time I say it to myself, something small inside me squeaks like a squirrel that’s been kicked and curls up into an unhappy ball. We had a chance to visit a birthing suite at our local hospital and it was pretty cool, very different to a delivery suite, large and comfortable with a big bed and a spa for soaking in. It was really exiting and a bit frightening. I felt a long way away from my own territory. I’m doing my best to give myself lots of space to process things before they happen. I’m hoping that book writing will give me a project to focus on while we try.

I’m not quite back in the zone I had going for work before the surgery yet, still struggling to walk far or eat regular meals, and work is erratic because college stuff is due next week and Rose is ill, not to mention I’m behind on housework. Between the surgery and choosing to link my mental health work to my face painting, I’ve scared off about $2,000 worth of work in the past few months, compared to this time last year. I’m expecting that loss to double by the end of this year. That’s sad and hard, but hopefully as I pick up more mental health work it will be worth it. It has been really nice to be in less physical pain from all the painting than I was at this time last year.

Life goes on hey.

Preparing for the death of a child

Rose and I are closer to starting to try for a baby. I’m down to 1/4 of the dose of hormones that keep my endo and adeno under control. We have a wonderful donor on board. I sleep at night cuddled up to a full body length pregnancy pillow and rub oil into my tummy to prepare dry skin for being stretched.

Hope and hopelessness grow in equal measure. “With dreams of a bright future comes also the dread certainty of loss.” You can try to ignore it, stuff it down, run from it, but it will speak to you in nightmares, it will wait for you at 3am, it will shiver in your bones and be a scream that only you can hear, beneath the humming of the world.

So we turn, and sit, and face the unthinkable thing. We are trying for a baby, who may die. Three weeks alive, or 6 months, full term stillborn, early death, accident, terminal illness, disappearance, suicide. To love on this earth is to open your heart to the guarantee of grief. My darling Rose has suffered the loss of six pregnancies. Each deeply desired, dearly loved and hoped for. Each child dreamed of and nurtured with everything that she had. Sometimes love is not enough.

Rose and I have struggled with grief. We’ve had very different needs and approaches and experiences, and this has torn us apart at times. We’ve navigated the loss of friends to suicide and sudden death, the anniversaries of miscarriage, loss of friendships and relationships dear to us. We’re been given many shadowed days to begin to understand each other in grief, to sit with the terror, and start to find our own ways through. We have often grieved alone. Grieving together with a partner or in a family is different. Denied grief, overwhelming grief, grief that shatters lives and tortures the mind is something we’re both familiar with in different ways. We know we’re vulnerable.

Everyone is vulnerable. Our culture often isolates the grieving. We do not speak the names of the dead, we do not know what to say, we visit avidly in the first month and when we’re most needed in the 6th month when the shock has worn off we’ve moved on to other pressing matters. We’ve pathologised much of the process of grief, and presented ideas of joy and sadness as being opposite poles a spectrum rather than separate, legitimate, and overlapping responses to life. Ask anyone who has lost a close friend the same week they gave birth to a child. Ask anyone who has fled an abusive relationship and grieved the loss of their hopes just as intensely as they experienced joy in their freedom.

You cannot ever be really ‘ready’ for loss, because when we think of this idea of being ‘ready’ we picture someone who will be unaffected and unchanged. This is not how grief works, any more than it is how love works. It changes everything in us and in how we see our lives. Some things suddenly become meaningless while others are lit up in the most intense way. You cannot be ‘ready’ when this is what ready means to you. But you can certainly be set up to fall hard. Beliefs such as ‘if god/the universe takes my child away it’s because I was not going to be a good parent to them’ will cause terrible suffering.

The way losses are explained can ease or deepen pain. Rose was once told by a doctor “your body is killing your babies, we don’t know why” which left her distraught and suicidal, with terrible self hate and conflict. Later on, coming across many other explanations for miscarriages, including things like “sometimes there is a problem and the body cannot sustain a pregnancy” or “sometimes babies are not put together right and they die early”, there were other ways to understand what had happened that were not personal and didn’t indicate intent to harm.

Not so long ago my sister’s beloved little cat Kiki died suddenly. It was horrible and a huge loss to her. It brought to mind our families rituals of grief around pets. Whenever a pet or rescued animal dies, we’ve always buried them in our yard. Sometimes wrapped in a cloth or placed in a box, but always in a grave that’s filled with flowers and leaves from the garden.

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Kiki’s grave before burial

We don’t permanently mark the graves, although we do often place rocks or tree stumps over them to keep them undisturbed. The gathering of the flowers has become a very gentle way of returning the bodies to the earth, of connection with the cycles of nature. Pippi and Tessa, my darling rats, were buried under winter lillies. Charlie under autumn leaves and the last of the roses. Kiki under snowdrops. There’s something much gentler about heaping earth onto the plants instead of directly onto a body.

Rituals and other things that mark the loss can be deeply important but also difficult to come up with in the shock of grief. Having a history of them can give us a connection to other losses that’s both painful and encouraging, raising past pain but also reminding us that this is part of life and that there will be new joys.

In early miscarriage there’s often the challenge of not having a body to bury. A ritual such as placing flowers, visiting a tree, lighting a candle, or choosing a date to remember the ones who died can all give a ‘home’ to the grief. In infertility, likewise there is no defining moment or ritual to share. When a previous long term relationship of mine became abusive and broke up, I grieved the children we’d planned together, but I grieved them silently and alone. Grief consumes us with loneliness when we cannot share it, and without a place, date, or name, we don’t have the language to.

People have found ways to work with this. I named the child I’d been planning for and wrote them poems. I lit candles for them when I felt them near and the grief was strong. Rose and I are collecting two lists of baby names, one for living children, and one, pretty but impractical, for any that die. I’ve found an Australian Not-for-Profit called Heartfelt who provide cameras and other services to families who’ve had a stillborn or terminally ill infant. I’ve come across other unconventional ways to mark loss such as this photoshoot of a wedding prevented by death of the groom to be. I’ve read about death and loss and grief, and watched heartbreaking documentaries such as Losing Layla and the follow up Regarding Raphael. I’ve come across instructions on arranging the funeral for a baby, and how to get a certificate acknowledging the loss of an early pregnancy. I’ve found a local funeral company who are creative and flexible and offer home funerals, The Natural Funeral Company.

We’re still not ready. It’s not possible to be ready. But it is very possible to be in denial, under-resourced, inexperienced, and paralysed by fear. That, I’m determined not to be. Grief can destroy relationships. Rose and I hope to journey together, without regrets, whatever the outcome. We walk into the future, full of hope and fear and love, death in one hand and life in the other.

Endometriosis & adenomyosis 1

“Extensive and severe” are not the words you want to hear when a doctor gives you a new diagnosis. Frankly, I personally feel that I have reached my quota for diagnoses, and that if anyone wants to give me a new one, they should have to trade in an existing one. Pick a card, any card… Sigh. So, I’ve been having as bunch of tests over the past few months to check up on my fertility. I’ve already been diagnosed with mild endometriosis, and donor assisted conception can be wearying for both families involved so we wanted to do all the checks we could and get any treatments needed before wasting a lot of time trying to conceive if there was a problem. So far a lot of the news has been good; I have healthy ovaries and lots of eggs. A few weeks ago Rose and I received the news that I have severe adenomyosis. It’s a bit hard to process, and I find it harder to share about physical illness and disability than I do about my mental health, so I’ve sat on it for awhile.

On the one hand, having a name for it makes no difference to what I’ve already been living with. On the other there’s a huge weight of sadness and fear. Perversely, there’s also a sense of vindication. I was frequently ignored and had my terrible symptoms downplayed by medical people and others, especially as a young woman. It was devastating and made me feel profoundly alone and overwhelmed.

A crash course in the conditions, not for the super squeamish. The womb has three layers, the outer one is muscle, then there’s a layer of tissue, and lastly the inner layer which is called the endometrium. This is the part that grows and swells up ready for a pregnancy, and then sheds and bleeds every month as a period. A healthy endometrium is essential for a fertilised egg to implant (that means link up to the womb via the umbilical cord) and be nourished and grow. In endometriosis, (endo) little patches of endometrium grow elsewhere in the body. Most commonly they are elsewhere in the pelvis, such as growing on the ovaries, intestines, and other organs. More rarely they are elsewhere in the body such as the lungs. It is very rare, but possible for men to have endo.

Nobody knows for sure how or why these patches occur. They’re like weeds, growing all over the place where they shouldn’t be. The big issue is that they try to function like the endometrium does, every month they swell up and then shed blood. This blood doesn’t drain away the way a period does, so there can be issues with pain and infection, and sometimes they can chew into places such as ligaments or patches of nerve cells. They can cause fibroids and adherence where tissues glue together, such as sticking the ovaries to the pelvic wall, which can cause worse pain. If the affected tissues are delicate areas such as the fallopian tubes, endo can compromise or destroy fertility. It’s also common for the extra blood loss to cause iron deficiencies. Endo is usually diagnosed through a laparoscopy, a surgery where the gut is checked out with cameras through small holes in the skin around the belly.

Treatments for endo are more usually about managing it rather than curing it. There’s a range of options from surgical removal, using hormones such as the Pill to prevent periods and therefore stifle the endo growth, dietary changes and so on. Some people find some approaches way more effective for them than others.

Adenomyosis is similar, in that again it’s the endometrium cells growing where they shouldn’t. With adeno, the endometrium invades the tissues of the womb itself. Pockets of endometrium cells swell and bleed into the tissue. In severe cases, all the womb is affected. It’s swollen and heavy with the pockets of extra cells, there are issues with pain, excessive bleeding, and cramping of the muscle layer. In some cases the adeno prevents the clamping down on blood vessels that supply the womb, causing chronic pain and bleeding problems. With severe blood loss, the body struggles to replenish the supply of red blood cells and severe anaemia can result. There’s only currently two ways to diagnose adeno: one is performing a hysterectomy, that is, taking out the womb, and then examining it. This is obviously not appropriate for young people or those hoping to have a child. The other is through an MRI scan, which is not quite as conclusive, but gives a lot more information than other scans such as ultrasound.

It’s only been fairly recently that adeno had started to be diagnosed, so not very much is known about it and sources of information are conflicting. It may increase failure rates of implanting embryos, miscarriage, preterm labour and other fertility challenges. Treatments are very limited, in some cases surgical removal, or hormone blocking to shrink the growth – sadly this only has a very temporary effect. Three months of hormone blocking will provide about three months of adeno-free cycles.

Both endo and adeno usually respond really well to pregnancy, and it used to be common for daft doctors to suggest pregnancy as a management tool. This is partly how the hormones help -they mimic pregnancy in the body and when taken continuously (without sugar pill breaks for ‘periods’) they suppress the growth of each. Both endo and adeno can be odd in that how severe they are and how bad the symptoms are don’t always line up. Some people with severe endo have few or no symptoms while others have mild endo but suffer terribly. The location of the endo may have something to do with this – for example endo that chews into areas with a lot of nerves may cause a lot more pain than endo in areas without many nerves. Some people have awful periods and problems with pain and no clear cause can be found, which can make figuring out a treatment incredibly difficult.

So, we have no way of knowing how the adeno may impact our baby plans. I’m having a lot of trouble with experiences of severe depression when we make even minor changes to my dose of hormone to manage these conditions, so at this stage we’re avoiding the hormone blocking treatment because I think my head might fall off or spontaneously combust. We’re tailoring my dose down carefully, hopefully in a couple of weeks I’ll be completely off the pill and ready for my first cycle! I’m taking iron supplements already as the severe bleeding leaves me badly anaemic, which is not good for me and particularly not good for a developing baby. We’ve also made the call that my efforts to be restored to a ‘natural’ cycle at some point are pointless – when I’m not trying to get pregnant I’ll be using hormones to keep these in check. The longer I’m off the pill the worse the symptoms get, so we’re hoping for a 6 month try at pregnancy then we’ll re-evaluate. We’ll be tracking iron levels pretty closely and if I’m lucky I’ll get pregnant quickly before the adeno makes it impossible to work. If I’m very lucky I’ll also have a good pregnancy! Lots of unknowns, but a little more information than we had before. And certainly all worth it for the chance at being a Mum.

Our greatest adventure

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Rose has the best taste in baby clothes, she came home with this little gem the other day. It reads “this is our greatest adventure”. Couldn’t agree more. It’s beginning. I’m finally recovered enough from surgery to begin walking again. I’m tapering off my high dose contraceptive pill to a low dose one (quick changes in hormones send me into severe depression). And I’ve started on folic acid, iron, and skin care for stretch marks (dry skin, eczema, dermatitis, hives, hot weather, and pregnancy weight gain do not make for a happy person).

It’s scary, exciting, wonderful, confusing, sad, strange, moving, and uncomfortable. Definitely an adventure. We’re making our maps up as we go, having amazing experiences, getting lost, sometimes falling off cliffs. There’s no one I’d rather be off exploring with. 🙂

Our family van

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Rose and I have bought a van! Eep! It’s a Mitsubishi Starwagon, and we’ve called her Luna. 🙂 What’s so exciting about her is that she has a row of back seats that fold down to form a platform we can put a bed on to go camping! This is the best of both worlds for us, we can camp, and also put baby seats in the back. It has air conditioning and power steering which is perfect for me, it drives as light as a cloud and is easy for me to manage even when I’m tired and sore. We’re very excited about it!

We’ve had to borrow money to buy it, we’ve been able to save a lot this year but not enough for a swish vehicle like this. We’re waiting anxiously to hear whether Rose will have her contract renewed at work. If she does everything will go swimmingly. If she doesn’t but land one of the other jobs she’s been applying for, we’ll be okay. If she winds up unemployed for a stretch, we could be in trouble and may even have to sell it and buy something something cheaper or drop to one car between us. Fingers crossed! It was a big decision and we talked loads about it and crunched all our numbers and thought about everything else we could buy with our savings… And made the call that a second home on wheels would take some of the stress out of moving us both into my little unit. So we’re going to try!

One step closer to starting our family. 🙂 And we have two running cars again! I can go out during the week while Rose is at work and run errands! Life is so much easier. 🙂 As soon as we get the bed base braced we can go for a camp – I can’t wait!

I’m still very tired but slowly continuing to recover. The last few days have been kind of all weather in one day, lots of stress with loved ones going through really rough situations, intense conversations and so on, but also fun times, moving times, a walk on the beach, ice cream, and the end of season three of Buffy. I’m tired, grateful it’s bedtime, and looking forward to a new week.