A Stitch in Time

Some years ago, I had a rather significant operation. I called it the ‘hitch and stitch’. An internal lady parts renovation. One part of that renovation called for my uterus to be stitched up via my pelvic ligaments to my spine. It was a great thing to do, for good reasons, and it worked. But the stitch on the left side seemed to be the cause of debilitating pain through my pelvis and down my left leg and ankle. I’ve been managing it since then; pain, pain meds, the endless juggle of when I can take them and have the relief I so need.

16402943_10155114409770815_3691405680726803391_o
Waiting for surgery.

When you are taking really strong meds, there are some things that just aren’t right to do, like drive your kids around, or work. You can’t rock up to a teaching or a modelling job with a floaty head because you’ve just taken your oxynorm. So on the days I worked, I just had to deal with the pain. There have been many tears shed or short words delivered to my nearest and dearest when I am back home after a day of smiling through pain.

Pain sucks.

I’ve learnt to adjust things as I go. Thinking all the time “can I take my pills yet? When will they kick in if I take them now? What else do I need my brain for today?” and then, the pill is swallowed and the other-worldly, floaty absence begins. Sometimes, when it kicks in, I cry with relief.

I am still aware of the pain when I take my pills, but I no longer care about it. Unfortunately, I no longer care about most things when I am in that state and finding words is a challenge. I might drift off mid-sentence, or repeat the same thing multiple times.  Writing for this blog doesn’t work when I am under the influence of my pills, or doing the freelance work I used to enjoy so much. So I’ve written less.

Managing pain meds makes me anxious, because I don’t want to give myself an addiction problem. I also hate my kids seeing me like that, tuned out. I often don’t take my meds when perhaps I should for that reason. But what can you do? Life goes on. Mother work doesn’t seem to be outsource-able. Pain just exists and we survive it. Centuries of women have dealt with women’s issues and got through. And if we can’t, we fall in a heap for a while… and if we’re lucky, the troops rally.

I have felt so fortunate to be in remission from Pandysautonomia that I have felt I cannot legitimately complain. I mean, my life, even with pain is so much better than before. So mostly, I have just shut up about it. People don’t generally want to know anyway.

16426007_10155114409680815_3494155030622023331_n
…suffering isn’t usually something it is socially acceptable to ‘selfie’

The day before yesterday was an important day for me.  I had a surgery to attempt to fix the problem with that stitch. My uro-gynae surgeon is Tim Dawson, one of the worlds finest medical people. He’s so kind. Previously he had done a hysteroscopy and identified the inflammation, and the location, of the rogue stitch so he knew exactly what to do. We are fairly certain this is the culprit. And here it is.

16473076_10155114409685815_6969079676675705879_n
This little stitch caused me a lot of grief!

My arch enemy, the cause of my pain, the author of all that suffering. It’s so small! But so are the nerves it harassed. Aggravated nerves can pack a wallop of pain when they’ve been bothered for a long time. When the nurse handed that stitch to me in a specimen bottle, I examined it closely: my Evil Nemesis. I thought about how much I hated it, that small but powerful stitch. I felt like you might feel if a scary spider that bit you is trapped in a jar. Like a victor.

Now, we wait. We wait for the bruising and dissolvable stitches from the operation to repair. We wait for the other procedure he did (an intra-uterine ablation) to heal. We wait for a good number of weeks on strong pain relief to see if my brain can cease firing on the same old pain pathways. And then, we’ll know if it worked. I feel hopeful.  I’ve been working with the Pain Team from ADHB and they have been so outstandingly helpful. They made sure that this time, there would be no re-admission to hospital from pain flare. I’m so lucky to have access to that team, they really know their stuff.

Wouldn’t it be great if removing this stitch in time, saves nine!

Here’s to all you ladies, who like me, never seem to have an easy time of the lady-parts-shebang. To all the girls suffering with difficult periods, menopausal madnesses, fertility frustrations and women’s woes. Here’s to you, to us.  We often don’t discuss these things because it is awkward, or embarrassing, or deeply personal. But if you are out there hiding in plain sight, suffering because of your lady business, I send you solidarity. Hang in there sisters!  The other side of menopause shines like a beacon of joy just over the horizon!  Let us sally forth!

And especially, here’s to the ladies who stood by me, offered to help and made me feel okay, to Pru and Tamra, to Flo my ever-wonderful bestie, to Mo and Toni, Noodle, Bunny, Bee, Nettie and Trissy.
Sisters in biology and sisters in soul. I am lucky to have you on my side.

Just look at what we can do even WITH the difficulties of our ‘downstairses’.  Women are incredible!

Nodel Life

No, it’s not a typo.

euphoria-rachel-083
…am I a nodel?

Yesterday, waiting for a coffee-to-go in busy Gisborne, I flicked through the local rag.  I saw an article ‘Brands Waking to the Appeal of Real Women’ about recent research into fashion marketing.

[I don’t use the word ‘real’ myself, because all women are real women, regardless of size. I prefer the term ‘regular’].

The studies focused on the relationship between the type of models brands employ and people’s buying behaviour. The specific focus of the research was the use of diverse models. The article referred to these recent entrants into fashion circles with the slang term ‘nodels’  as in, ‘not-models’.  Pictured was one of the most iconic plus size models in recent years, Tess Holliday.

Research uncovered a desire for brands to promote images that reflected greater diversity and signalled that they felt this would lead to greater brand trust and longer-lasting consumer relationships. The media and brands are waking up to this…
from Suzanne Winfield, New Zealand Herald 26th December, 2016

‘NODEL’ stuck in my brain. I didn’t consider the ‘nodel’ label offensive; it’s just another nonsense word. But I mused for a bit about how I must be a nodel, and about how close the word nodel is to nodule, a very unattractive thing, or to noddy, something I am, often!

The word also made me think about the modelling work I have done.  Was I ‘not-modelling’ during those shoots?  Was the photographer ‘not-shooting’ and the makeup artist ‘not-making-up’? Was the job ‘not-selling’ clothes? No.
So the ‘not’ part must refer to the industry aesthetic attached to the word ‘model’.  To how I look, not what I do.

euphoria-rachel-102

I don’t look like a typical straight-sized (ie. size 6-8) model, I look like a regular woman.  I’m grateful to, and I don’t think nodels like me need a different label. Can we not all be models if we do modelling work? A simple thought to thunk, as my friend Pooh would say.  A mannequin is a mannequin regardless of it’s size. Come on fashion aesthetists, get with the program.  We all buy fashion, all sorts of bodies, it makes perfect sense that we want to see fashion modelled on bodies like our own.

euphoria-rachel-243

Today when I got home from our long Christmas road trip I was greeted by a package from Euphoria Design (thank you Monique and crew).
This beautiful New Zealand fashion label design clothes for women size 10-24.
Earlier this year they ran a model search called ‘Confidence is Beautiful’. You may have seen my post all about it. The shoot was about showing the relationship between inner confidence and beauty. It was about people like you and me. It was such a great concept! I was lucky enough to be selected along with nine other gorgeous kiwi women. We were from all over the country and all walks of life, we were many variations of ‘woman’. I made some wonderful friends that day, was spoilt rotten and enjoyed a glamorous shoot in a new season Euphoria Design dress.

Today, in that parcel was a cute framed shot from that day and a memory stick with all my photos, I’ve been waiting for them since our shoot and it is so cool to be able to at last share them properly on here! My Nodel Life! Haha! Seeing the pictures again brought back all the fun of the day and made me feel proud to be a nodel/model (whatever!) and a regular female of the human species.  I couldn’t be happier about being part of the movement for greater visibility in fashion media. We need to see more regular bodies. Our daughters need to, too. Desperately.

euphoria-group-2596

PS. How gorgeous is this print?  The photos are black and white and don’t show the Navy and Milk white print in it’s true form, but it is such a fresh summer print. I love it, and unlike most ‘nodelling’ jobs, this time I got to keep the dress! I know!  Lucky!

euphoria-rachel-013

Do you like seeing bodies like yours in fashion media?
If you do, let your favourite brands know!

It’s a Damn Shame

 

source
source

 

This morning I was chatting online with another Dysautonomia patient.  She has Neurocardiogenic Syncope, one of the types of Dysautonomia, where I have Pandysautonomia, another type. We are both in the same city; we are from similar socio-economic backgrounds and both fall into the same District Health Board zone. We have seen the same doctors.  But the treatment we have both received has been different.

On seeing the same specialist, about the same issue (recurrent fainting), she was told she was ‘faking it’. I was given a room of my own in the public cardiac ward and fitted with a pacemaker to stop the faints from occurring. I don’t know the ins and outs of her medical history, so this is not an entirely objective comparison.  But I know that her new cardiologist takes her condition very seriously indeed.  So seriously he admitted her to the cardiac ward before and after recent surgery so that he could monitor and treat the various issues anaesthetic drugs and surgery would create with her autonomic nervous system.  She is no ‘faker’.  Another friend with Dysautonomia, in another part of Auckland, has been abandoned by her District Health Board altogether.  She struggles, largely bedridden, without medical care of any kind.

Many patients with our diagnosis endure consultations with Specialists who cast aspersions on our authenticity.  I can only conclude, that ‘fakers’ must occur frequently in doctors offices.  Otherwise, I can’t understand why it would be such a ready conclusion to be leapt upon?  Perhaps, when the answers aren’t easy to find, some doctors find the alternative of ‘the faker’ patient more palatable than saying “I don’t know”?  It must be difficult as a doctor, as someone who relies not just on their years of experience but also on their mental accuity, to consider that they don’t know what is wrong.  Is dealing with not knowing, ever part of a doctors basic training?  Do they cover what to do when they are faced with a patient who doesn’t fit within their current paradigm? Perhaps medical school is where a doctor learns to make the judgement of “faker” in the first place?  Doctors, Specialists, I would love your perspective on this if you are reading.

I remember sitting in a doctors office once.  I was very ill.  I’d been fainting for most of my post-adolescent life. He explained that were I a young woman, he might think to ask me about my relationship with my mother.  “Some young women who don’t get on with their mothers have a tendency to hysteria and unexplained ‘fainting’…” he mused.  I waited for him to smile and tell me that thinking like that used to occur in medical circles oh, around the time of Austen.  But he wan’t joking. He continued “you seem a reasonable person…” and proceeded to discuss the treatment he had planned for my actual symptoms and the signs visible in my tests.

I think I was a lucky one.  My profession lent me some respect.  My manner seemed ‘reasonable’. My age at diagnosis was clearly an advantage (lucky me, I’d been sick for longer than some of those poor ‘young women’).  My test results were dramatic. The fact my husband works in the Health Sector and was a familiar face possibly also lent some significance to my case.  But should it need to?  Should younger patients have the onus placed on them to prove that they are in fact emotionally stable?  Shouldn’t objective tests be recognised and patients treated impartially?  Should doctors not err on the side of “I don’t know” rather that “you are a faker”?!  Is it so painful to not know?

We rely on doctors to be scientific; objective.  But doctors are human. The sum of their personal and professional experiences contributes to their professional values.  They come to their praxis from their own unique place on the values continuum. They have ideas already entrenched, in relation to some conditions. Sometimes these ideas are there because of experiences with previous patients.  I did once see a doctor who referred to people with my diagnosis (then, it was POTS), as “you people”. Sadly, fainting has for centuries been considered a ‘female failing’ a sign of a ‘weak constitution’.

Michelle Roger, an Australian Dysautonomia Advocate and Health Activist, recently wrote an excellent article about when being a woman is an impediment to medical care.  I urge you to read it. It’s an issue that needs to be discussed more in community forums. I and other patients with rarely diagnosed diseases or chronic invisible illness welcome any opportunity to discuss these issues with medical practitioners.  It all starts with the sharing of articles like Michelle’s.  With engaging in discourse about why some doctor’s offices provide this shaming and difficult experience for many genuine, female patients.  It’s not on.

It’s a damn shame. Being laid on the wrong shoulders… and it’s got to change.