Still here, still pregnant

Whoo!

So, I did a 5 hour gig at the Adelaide Zoo today in 40C degree heat. Fortunately they put me indoors so I didn’t spontaneously combust at any point and merely came home fatigued and sticky. I painted people and wrote poetry and cautiously ate small healthy morsels of food, having learned to my dismay in the early hours of that morning that I am not processing rich foods well, and by rich I do not mean a litre of chocolate icecream, I mean stirfry with sauce on the noodles. Daaaaaymn.

I’ve binge watched Zero Punctuation game reviews, episodes of ER (yes, we are switchy, what of it?) and milled through that odd state where you’re too tired to do anything useful or focused but too bored to keep lying on the couch. I’ve bought groceries, and tidied the kitchen and sorted the dishwasher in 15 minute bursts.

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Games night it is! Trains, infectious diseases and so on to the rescue. Rose is trying to breathe through a head full of snot and feeding me large plates of salad that to her are currently merely an exercise in interesting textures. I have stocked up on nuts, seeds, fresh and dried fruit, and tried making my own orange juice iceblocks because I’m sick of the sickly tasting sweet ones from the shop. I have also bought honey macademia icecream, but as my insides feel like someone is actually rearranging the plumbing and may have left a few crucial parts out, I don’t think I’m going to try it tonight.

I sometimes share amusing stories about Rose sleep talking, which I love. She had a chance to return the favour recently. She woke up in the small hours and reached out for me and told me she loved me. I was still asleep but apparently reached over, gently patted her on the face and told her “Yes, I know. I love you too Zoe.”

Big News

Pregnancy AnnouncementYep, I’m pregnant. Positive test yesterday, doctor confirmed it today. 🙂 Whooooo hooo! All things being well, we’re due in October.

To anyone else who wants to tell Rose or myself not to get excited, that 4 weeks is early days, that half of all pregnancies this young are lost, and that we shouldn’t share about it until we’re further along, I have this to say: it’s probably a wise idea not to be standing in the same room as me when you plan on doing this. Seriously.

It does not hurt less when you don’t talk about it. (it does hurt less if people are less full of crap) It does not hurt less if you’ve tried really hard not to be excited first. It does not hurt less if you know all of the nasty statistics. You are welcome to navigate sharing, openness, and excitement however you want to. This is our way. Consider yourself warned.

We’re pregnant, third month of trying. We’re thrilled! We’re hopeful. We’re painfully aware of the possibility this will be a 7th loss. Doing the pregnancy test was, frankly, an act of courage, because it’s hard to do something you know will break your lover’s heart a little bit more. You have to wait three minutes for it to tell you results. I left it on a bench with a timer and wandered out of the room – Rose found it and told me, a delightful reversal of the usual roles.

I have a teeny little thing inside me that’s trying to grow into a person! So far health wise I’m okay. The sinus infection is more of a problem than the pregnancy.

We wouldn’t be here without Rose. I was never prepared to be a single Mum with my health issues, and I’d been told that with endo, 30 was my cut off to start trying. As 30 approached and I was single, closeted, and wrangling with a complicated life and head space, I let go of the dream that I would be a Mum. I borrowed books on infertility and started to mourn. Then this beautiful, smart, vivacious lady came into my life, with 6 losses behind her and a burning desire to be a Mama. Two and a half years of building a relationship, getting engaged, moving in, sorting out jobs and head spaces and life together and what feels like about 50 cats, and here we are. In with a chance at turning our lives upside down and inside out. Hoping like hell this one sticks.

Games and gardening

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Rose and I are pacing ourselves through all the stress with good distractions. A couple of wonderful people have made donations through this blog recently, and we went out and bought this very cool game. To mark the official first day of living together, we stayed up very late playing it. We’ve since taken it with us around to several friends and family to introduce them to it.

Today we did a stack of stuff around work, the kind of ‘send people into panic attacks’ stuff, so we also went to Bunnings and bought a few things to do in the garden. We stayed out until dark today cleaning up the front of our place, sweeping, potting up plants and installing a watering system. I’m sore, tired, but happy to have a break from the big stuff.

I can hardly think straight. I managed some critical admin today, I haven’t replied to a stack of messages yet or managed to untie my tongue to thanks the kind readers who’ve donated and sent wonderful messages of support. I’m having a lot of trouble with my ‘I hate myself’ voice at the moment and I feel wildly undeserving, even ashamed, of such support. It’s really hard to respond to graciously the way I want to. I feel like I have all the words in my head and then just sit at a blank email like a kid with shorts soaked in pee giving a grown up that good look right in the shoes and I can’t find anything to say. But thankyou, you guys. I do appreciate it, a hell of a lot.

I also did some reading about not for profit structures as the Hearing Voices Network has some keen people behind it and I may if I’m lucky, not have killed off all the enthusiasm over the Christmas and mad January that I’ve made them wait. I’m stressed and anxious and can’t think clearly or find time to ask all the questions or share all the hopes and fears. I’m tired from moving house, feeling burnt out – but in other moments thrilled, on the cusp if something amazing if I just try a little harder… And, you know, possibly pregnant and in that irritating two week wait before a pregnancy test can be usefully done. This is cycle number three of trying.

I’m sharing a house again. This is a big change! I could hardly roll over in bed the other night for all the cats and woman next to me and I thought to myself get used to it! My brain feels a little stretched.

But the garden looks great.

Poem – Here, in the dark

Here, in the dark, a deep contentment wells
I’m happiest here, alone with the books and poems
There’s such richness in them, such joy
I’m glad to be a writer, to count myself among them
They set my dreams free, ward off the creeping death
The chill, the grey, the numbness that overtakes me
The malaise I am too weak to fight alone
This strange religion so widely believed
That this is all there is and all that matters
These people whisper in my ear that I am mortal
That life is wondrous strange, that imagination is as real as shadow, love, hope, and the trembling sense
Of sublime meaning, that there’s some sense to the world, some pattern to our path, a meaning in our doings and our withholding
That such is a gift, as the trembling doubt is a gift, that they stretch our spirit and give us humble connection to each other, all bowed and small before the great tides, all with the knowledge of joy and loss, this thing that can unite us.

Little unborn child, I’m glad you did not rush your coming past me and my night, did not slip past the shadows and into daylight without my chance to wait with you, darkened world and dark womb, to wait with you and think on you and speak to you and write of you. Little unborn, so loved and so unknown. I wonder if you’ll have any night in your soul? Any darkness in your eye, any poetry in your heart?

If it’s the unlived lives of parents that marks children’s paths you’ve quite a labyrinth to walk, my love. My life may be only a small portion of the Life, but it’s dear to me, deeply lived, dearly loved.

Rudderless we lose our way. But I know what I believe. Whatever stories we tell, they stay the same. I believe in kindness, evil, love. They are real, and powerful, and come wrapped in strange disguises. I do not know why, if it has always been so and if it is the same everywhere, but the real world thins and fades fast, like candles wearing down, and must be renewed often. The key is in the seeing clearly, the right naming of things. If I understood this I would understand the language of owls and the dance of planets. Such is our life. We sing and falter and fall and rise to sing again. We are both darkeness and light, faith and doubt, sea and shore. Each of the seasons have their turn, we understand great wisdom, and lose it, only to gain it again. Somehow it’s not meaningless but beautiful. We are reborn.

There’s a quiet ecstacy in my bones, they chime softly to themselves and speak the language of planets, spinning in space. I’m inviting a family into my home, into my peace and solitude, and I feel ecstatic joy at the breaking of our time of quiet. I welcome the tearing down and the giving away. Wine is pressed from my trampled heart, flowing dark and sweet. I’m happy beyond speaking that my life has come to this. It’s worth the risks. Should all end in fire, I acted with courage, I dreamed a new dream and birthed it here, on my own, in the dark.

(don’t pity me, what’s to pity? I’ve lived richly, seen things you wouldn’t believe)

This is not the last night, there’ll be more nights, more writing, more poetry, pacing with babe in arms, walking in rain with dog, sitting up late by the ocean, listening to my heartbeat. I know this as surely as I know this is my hand and this my hip. I know this like I know the breath in my chest and pulse in my throat. I know it and I’m fiercely glad of it. It is a good thing to be alive, so deeply alive, so full of stars and night.

One of the weird days

Yesterday was one of those blah days where nothing feels like a good fit. I tried lots of approaches, none of which helped, and shrugged, headed to bed and figured I’d feel differently after a sleep. Well, I was right. I had intense nightmares, of the kind where you wake up and feel so distressed you want to throw up. The content lingers like you’ve watched a vivid, personal horror movie that’s burned images into your mind. It’s been awhile since they were an issue! This morning was meltdown territory as a result, panic and intense dread. I took a bath, read some book, wrote in my journal, and scraped myself together enough for my appointments. Today was admin appointments, getting stranded with a vehicle that needed engine oil, and having a blood test – STILL no bad reactions, even on a horrible day like this one! Did, however, re count my days when I got home and discover I’d done this one a couple of days early by accident and will have to repeat it. Sigh.

I saw a disability employment person and cried about how stressed I feel about my business at the moment, wondering if I should be pursuing employment instead. She ‘reassured’ me that I wasn’t passing up some wonderful opportunity – most people like me with an episodic illness are unable to find good work. We get casual, short term, poorly paid work, issues with workplace bullying, and more often than not – contracted volunteering. So if I’m going to not get paid (or paid well enough to survive) and lose my job every time my health wipes me out for a month – I might as well be running my networks and continuing to build my business. Right? The anxiety levels have been tremendously high about it lately, I think trying to get pregnant is sending me into panic mode a bit. It a hard road to walk sometimes. And a brutal reality to face what my openness about multiplicity and psychosis are costing me – and what they cost millions of other people. I hate this.

On the plus side, I’m continuing to clean the house up (it got a bit swamped over Christmas, plus I need to make room for a guest and also Rose moving in soon), keep the garden alive through the heat, and sort out food and meals.

I feel way better than I did this morning, but still ‘off’. unsettled and not myself. Haven’t settled into the new year yet. I don’t have a sense of being on firm footing. I’m picking up on other people’s feelings, seeing the world through many different eyes (but not ours) – perspectives of friends, authors of books or articles I’ve read, proponents of particular ideologies. I move between them feeling the clashes and contradictions like burning places in my mind. Hot and sparky. Then I feel myself move back from all of them and suddenly nothing seems real. I find myself walking outside of my home and looking at a tree thinking – ah, there it is. Reality. The thing beneath all the theories. I feel slightly swamped and detached at the same time. And oddly lonely. Part of me is waiting to find out if I’m pregnant and it’s impossible to feel much about that so I’m not feeling anything. Not even numb, just like I’m holding my breath. I can’t breathe or feel again until the cycle ends. Last month I actually felt pregnant some of the time. This time I don’t at all. I don’t even feel like I’m completely here. Man, these reactions are unpredictable!

Ticking away in the back of my head, as always is the book. There’s always more reasons not to write it than there are to write it. I feel like I’m slogging through a thicket of brambles each and every time I just sit down at a keyboard or notepad and work on it for an hour. I don’t want to put myself out there as some kind of leader. I don’t want to present myself as an expert or have people follow my advice. I am aware – like most people who deeply investigate a topic – of the truly mammoth amount of material I haven’t yet read, ideas I haven’t digested, communities I can’t possibly represent. I hate it. I can’t do justice to the field. The only thing that keeps me going is reading what’s already out there and realising how huge the gaps are and that even my pitiful efforts are an improvement on some of the rank dogma that is messing with people’s lives. But hells, it’s hard to remember that.

So, here’s to the weird days. The not recovered, not perfect, not trying to lead anyone anywhere days where despite feeling like my brain is not entirely in this dimension I’m still a decent and useful human being. The biggest crisis today wasn’t even mine, I’m a support person in the backdrop of someone else’s rough time. (we have an extra house guest on our couch for a bit) I’m still needed and still loved and we all half limp half dance along together I guess. Missing my friend Leanne like hell. Signing off from the Colony. (she would get that, we used to write. My place was the Colony and her’s was the Outpost. All the shorthand and in jokes that die with a friendship.) Just breathing.

Ink Painting – Waiting for you

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A new ink painting! We’ve started our second cycle of trying to get pregnant today. The mood is optimistic about our house. We’ve been cautioned and chastised a few times since we started on this path about how openly we’ve chosen to share our experiences. Each to their own of course!

I was talking with Rose about this again recently and asked her if it was harder or easier to experience loss or disappointment in secret? She said, for her, it was harder. Secrecy bred shame, layered confusion into relationships where people didn’t know why she was reacting the way she was, it left her alone in grief. Personally, that’s certainly been my experience also. When it’s chosen as a preference, it’s privacy. When it’s imposed by others, by culture, by friends or family who don’t want to talk about it, then it’s something else much more lonely and painful. As with so much of life, it’s about having the freedom to choose. I’m glad to not be alone in this.

Home Again

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Home again safe. My sister drove to Melbourne with me (interstate, about a nine hour drive) as for Christmas she gave me a ticket to see Nick Cave. It was a great concert and trip. We drove home through the Grampians, got bogged once in soft sand and spent the night there, but dug out this morning and headed on. I missed Rose like crazy, and it was strange and painful to be dealing with our first finished cycle apart. But it also kind of worked. We both did our thing and came back together at the end. Cave was perfectly timed, reminding me that I’ve never sought a life that’s less painful, I’ve always wanted a passionate life. To be deeply alive.

I hurt like crazy and went down into that and came up again to find myself feeling deeply contented.  We drove through bush, slept under stars,  did a lot of thinking about and writing for the book, and a lot of gentle sitting with my own headspace. Something in me runs free when I’m out in the bush. I’m very lucky to live in this country.

And home again, to beautiful Rose, and a long shower, and my own bed, and the animals. Glad to be here, glad to be alive.

Schroedinger’s Uterus

A friend joked that I currently have Schroedinger’s uterus – I may or may not be pregnant. That’s exactly how it feels. I ovulated 7 days ago. Sometimes I feel pregnant. I’m queasy, my nipples are tender, and there’s a slowly kindling sense of hope that we’ve been wildly fortunate and conceived on the first cycle. A deep peace settles in my bones and all the noise and fuss of life goes quiet, like someone has closed a window on the traffic noise. It’s beautiful. Other times there’s nothing there, no sense of a presence, just an empty box, an egg timer with no sand in the glass. More painfully, sometimes there’s the fear that a tiny life was present that has gone or is fading. I find myself talking to it and begging it to stay.

I’m busy at the moment, following up all the wild interest in the Hearing Voices Network. I’ve been to conferences and workshops before where there was this huge surge of potential connections afterwards (although that’s not always the case) and I was too shattered from the travel and my own crash following it all, and my anxiety about putting myself out there to follow any of it up. This time I’m determined to ride the wave, write back to every email. follow every lead. But although I’m busy I also feel like I’m not rushing. There’s this even pace, nothing frantic, a kind of quietness. My head is full of network and plans and new friends and book drafts. But beneath it all I have one ear cocked towards the shadows, listening for my baby. Are you here yet? Are you with me? I love you. It’s like working in a house on the beach, listening to the roar of the ocean and always quietly alert for the tide to bring something in, for the waters to rush back into the darkness and leave something precious glistening on the shore.

Trying to get pregnant

Trying to get pregnant is weird. Coordinating with our donor when we didn’t get any warning about ovulation was quite challenging. We pulled off three inseminations over the last three days. Don’t talk to me about making sure the stupid cup lid isn’t cross threaded and leaking! I’ve spent a lot of this weekend feeling exhausted and lying around with pillows under my bum. I’m off my antihistamines and feel like I’ve been left on an ant hill. I’ve got big patches of zinc cream over missing skin. The fricking soles of my feet are so itchy I could happily shred them over a cheese grater. I can’t remember what I’m allowed to eat or drink. Rose randomly does things like poke me in the nipple and ask if they’re tender (they are now!). I can’t tell and I suspect if I knew all the symptoms I’d have them just out of general hopefulness. Trying to get pregnant is moving, beautiful, strange, funny, irritating, and icky. In so glad we’re doing it at home instead of through a clinic where it’s just another medical procedure. I’m already finding that aspect stressful, being able to go with things and play music and talk baby names and cuddle and have a chocolate or whatever we feel like together is so much nicer. Every sign of possible pregnancy seems to be uncomfortable, icky, or inconvenient. I just realised this morning that I didn’t start the martial arts course I was interested in yet, so I’m not allowed to now.

I wish I owned a vacuum cleaner, there is so much pet hair in my unit. Rose offered me one for Christmas, which I turned down because it was unexciting, but now I’m wondering if looking a perfectly good gift vacuum in the mouth wasn’t a stupid idea for a possible mum to be. Rose’s work are playing an exciting game of seeing how close to Christmas it can be before they tell us if she has a job. It’s like playing chicken with a small creature on the road, running it over or swerving at the last minute, and laughing at it because it looked stressed. She’s applied for about one billion others, but the ones that short list her are all out in the country… Work are also docking her pay randomly, apparently for overpayments they don’t specify. We’re pretty sure this is illegal but the payroll department seem to get away with it by not answering their phone or returning messages.

I’m really tired. Thank gawd college is over for the year. I’m going to go bathe in vinegar before I take off any more skin. I may or may not be pregnant. I am definitely itchy and bewildered.

I’m ovulating!

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OMG. You’re supposed to get a couple of days warning, but apparently I don’t. This would of course be on the day that we have 3 people coming round for cards and dinner, and are babysitting a very little person until midnight. O.o Currently figuring logistics out with our donor. Oh gods! Eee!

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.