Dressing UP

Today’s the day I’ve been waiting for to share something very exciting with you!  My friend wrote a book. And it is a goodie!

This post is a shamelessly enthusiastic plug*  for it. It’s an e-book and it’s packed FULL of stuff you thought you already knew, but then realise you had no idea about. See, she’s that girl who knows her stuff when it comes to organising your wardrobe and your personal style at the same time. And she has put it together in a big bundle of colourful info and useful printables, just for girls like us!

I’m telling you about it because when you find a good thing, woman-code demands it is only right to share it with your friends.
This may just be exactly what you need to inject some calm into your New Year.
I know it has already changed mine.

I was lucky enough to get a sneak peek of this before it went on sale. It got me from the morning ‘what do I wear?’ sigh …to a wardrobe high!   If you need some clever ideas on how to make your clothes work for you, this book may well become your new best friend (it even ‘reads’ like your good friend, the one who is practical but savvy, kind and smart).  If you need to know how to sort your wardrobe or even discover what your style is, in the first place, then it’s for you, too!

For years, my ‘style’ was all about dressing down. Trying to make myself invisible with various combinations of black or, on a daring day, neutrals.  I’d cover it all with a voluminous scarf and hope that no-one noticed me. Have you ever dressed like this?  Back then, my sense of self and fashion had been significantly de-railed by Pandysautonomia; six years of struggling to deal with nasty symptoms and the search for answers and treatment. I spent a lot of time in my pyjamas, or if I was going out, in jeans and t-shirts. I dressed up only occasionally.

Maybe you’re also unwell, or a busy mum (also challenging!) or uninspired. I can’t be the only one who has ever surveyed their wardrobe and lost the will to make an effort.  Over time I forgot how much I used to love fashion.  Forgot that colour makes me happy.

Since going into remission and discovering modelling, I’ve been converted into dressing UP; maybe it is all that trying on of things I would never necessarily pick up in a shop. It broke me out of my old habits. It makes me feel good now, to dress up. Better about myself. More put together. Stronger, more confident. To say that my wardrobe is fit to busting with the most ridiculous array of items now is an understatement because when I got well, I hit the shops running.

But could I find all this loveliness when I needed it? No. My wardrobe itself is sooo small, that’s an issue for sure, but there was no organisation or system going on in there. It was a scary place where all my fashion dreams went to die. I hated trying to come up with outfits I was happy with.

That’s why, when I heard that Monique would be sharing her wardrobe expertise via an e-book, I eagerly waved my hand and asked if I could preview it!  If you haven’t come across her before (she’s the boss lady who convinced me to do that swimsuit shoot), you can check out her style on her instagram feed or her blog. She’s got skills and she is a genuinely lovely person! You’ll like her, I promise.

 

But back to the issue at hand. You see my problem is,

I don’t like people seeing my bedroom.

Even my closest friends. It’s the bottom of my priority list in our home …and looks it, mostly because I can shut the door on it. The shortage of decent clothing storage has meant piles of things overflow from our tiny wardrobe into various stacks and baskets that litter the floor. The ironing table is permanently up, and serves as another place to ‘store’ things.  Argh! It’s a big mess.

I realise I have basically let you all see it, now I have described it!

I’ve dreamed about getting Monique over in her stylist capacity to do a ‘wardrobe edit’ but I can’t bear her seeing the way things are in here! The shame!

Well, Monique doesn’t want any of us to miss out on fashion freedom because of silly reasons like that! So she wrote her book for all of us. People who want to feel in control of their style, their wardrobe and their mornings but might feel embarrassed about their ‘before’ state. Her e-book is a kind, reassuring friendly voice full of practical and fascinating insight. You will thank yourself for getting into it.  I learned so much! I started clearing out that overwhelming fashion wilderness and I’m excited again about dressing up.  So many options I forgot were mine! Are you keen to fall in love with forgotten favourites again, too?

If you’d like to buy Monique’s e-book, there is an early bird special running for this week, where you can buy it for $20. That’s only like five coffees …or three smoothies. And it is worth every cent!  It has already saved me from buying more clothes.  The hubster is ecstatic!!

After the first week it will cost $24 (and is still totally worth it) but get in on the advance price and then you’ll have spare cash to buy me a thank you coffee later (!) Better make it takeaway so we can drink it while we take a tour through the wardrobe in my bedroom. Because now, you can come on in!

click here to check it out!

 

*full disclosure: if you make that (excellent) decision to click through from my blog and buy Monique’s e-book, I will receive an affiliate commission on the sale. I like to know these things when I am reading posts on other people’s blogs, so I’m telling you in case you do too.

Margot le Page -What If?

watercolour splodge with the words 'What if this is as good as it gets?" in white text

This Meet My Peeps guest post is written by a friend I met in my patient group. Margot Le Page is a wonderful writer and a gutsy person.  She asks a question each of us comes to at some point in our chronic illness journey.  And answers it in a powerful way.  I think you’ll agree that Margot’s perspective is worth sharing. Thanks Margot for sharing your story here.   -Rach

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I don’t remember when I first heard this question. It’s not original.  However, I do remember asking myself.

The first time was a couple of months after a 9 hour massive back surgery to correct and stabilise my spine which was basically collapsing. I had scoliosis and ‘rotting ‘discs. I was 47.

I had led an exciting and complicated life to this point. From Oxide Street, Broken Hill to Rodeo Drive Beverly Hills, 2 marriages, 2 beautiful children. I was confident, extrovert and capable.

But, I had always been a bit sick. Nothing too major. Adenoids, allergies, appendix, basal cell carcinoma, pretty much the full a-z, all the way to ’zoans (ie protozoans my gut!) But seriously, nothing really hit me hard and I always recovered, following my Mother’s belief that we were a family of self-healers.  She should know after all, surviving an aerial gliding accident, 36 and pregnant, resulting in massively traumatic injuries including a leg amputation and the awful loss of the little girl, Helene Julia, she was carrying.

I had been given the ‘bad news about my back when I was 17. I was training to be a paediatric nurse with access to great doctors and highly respected specialists who told me it (my spinal curvature) was going to get worse and I would eventually end up in a wheelchair. I heard them but certainly did not actually believe them.  Well, not on the surface anyway. Denial can be a nice safe place sometimes.

Maybe, just maybe somewhere deep inside my head I knew those boffins were right and I proceeded to live my life in a hurry, keen to get away from that place. I sought care and treatment away from conventional medicine and explored a myriad of alternative treatments. You name it, I’ve tried it. Acupuncture, absent healing, aromatherapy, cranio-sacral therapy, osteopathy, a Russian Mystic, numerology, past-life, sacred oils, Indian Brahma Kumari meditation. (I’m sure there’s another a-z here too!)  I studied Reiki and nutrition, Pilates and yoga.  And spent a lot, I mean a lot, of money along the way.
Needless to say, those know-it-all doctors I had seen many years before were sadly, pretty right.  I came back to Australia from the US to seek conventional medical wisdom in a country where I trusted the system and had family and friends to support me.

So, there I was. Single, adult kids doing their thing, a long way from Los Angeles and my ‘other’ life, in a reconstructed body I couldn’t yet drive, barely surviving on social security, fighting a bitter divorce, needing opioids, wearing an awful shoulder to hip brace, using a walking stick…… pretty bloody depressing actually.  I cried and cried for lots of things.

And then somehow, with no tears left and a couple of truly wonderful friends helping me, my head not really together, I asked myself the Big Question. “What if this is as good as it’s going to get? Can I actually, really live like this? Maybe forever?”  The answer came… not immediately. But then I surprised myself with a resounding. “Of course I can!”. My thinking changed. I recalibrated. I thought of all the things I could do, not what I couldn’t. I didn’t feel so bad after all. I could get on a tram 600m from my front door when my drugs kicked in, and with one stop would get me to a bank, post office and supermarket. It might take all day, but, I could manage. I began to notice little things again. Cracks in the footpath where tiny daisies pushed their way through, sunlight playing through my blinds, sounds of birds and crickets….. I was all right.

11 years later I’m asking myself that question again.
5 further back surgeries, broken rods, pulmonary embolisms, dural tears, spinal fluid leaks, a craniotomy, I even had my gall bladder out in there somewhere too and my finger stitched!
I now have 13 vertebrae fused (great posture), increasing numbness and weakness in my right leg and a new diagnosis, Dysautonomia. Great?  Not.  Terrible? No.

My dear Mother, now aged 85, only 27 years older than me, currently not in great shape, has taught me so much. So, if, if, I live to her age, can I go for another 27 years like this, like I am now?
Of course I can.  Not ideal, but….. (big breath)

There will be more challenges ahead, I know that. I will no doubt ask myself the question again, probably more than once.
With less I have become more.
I am a good mother, a good partner a good friend.
I don’t mind me.
I am fortunate.

What would you do?

I’ve been doing that thing patients do.

Waiting.

I’ve been doing it impatiently, because I’m like that. I goes like this. I’ll be going through my day and the thought occurs, as it regularly does:

How can I keep going like this?

Which always leads to the next thought…

Am I doing enough about it?

What would you do_(1)Well, I’ve been fighting for years to find someone who will investigate the cause of my Dysautonomia and consider treatment.  Last year, I found two great immunologists. Which brings me to the waiting part.  It’s like a circle of impotent wishing.  Drives me a bit bonkers, but that is the price you pay for not paying a price when it comes to medical care. We have this free medical system here and I am so grateful for it (because by the time I got around to organising Private Health Insurance, I was already deemed ‘uninsurable’).  If I’d been living somewhere else (like the US), my situation would be dire.

So I’ve been waiting (albeit impatiently!) for the immunologists to get back to me about the possibility of IVIG.  At the end of last year I had the tests they were hoping would offer a compelling base line. But the tests didn’t provide the strong results we hoped for.  It is one of the most incredibly frustrating features of Dysautonomia, that our tests don’t always catch our bodies behaving the way they do.

My tilt table test was ‘unremarkable’. Instead of my trademark drop in blood pressure and a heart rate that drops through the floor, my blood pressure was high.  The entire duration of the test was a painful torture for me, due to the pain in my pelvis and hip when I am weight bearing. I suspect the pain brought my blood pressure up, buoying my system into a false negative TTT.  But you don’t get a ‘do-over’, and even if I could, the pain issues I am having are still being explored, we know it isn’t structural; it is possibly neuropathic.  Another needle in the haystack.  Either way, it’s not going away overnight. By contrast, the gastric emptying study showed “an abnormal pattern of gastric emptying and small bowel transit compatible with (her) known Dysautonomia”.

And I am only guessing… but I think it is clear that more significant results would have made for a different outcome.  Fortunately, and sometimes unfortunately, the medical system functions on objective data. That’s just the nature of the science.

I had a phone call last night from one of the Immunology outpatient doctors at Auckland Hospital. He was a lovely person who was very thorough with all the details.  He outlined the plan for me. I will start a six month course of methylprednisolone pulse infusions in February.  If I respond well to the steroids, this will give us a better indication of whether or not I have an autoimmune aetiology.  That just means that we will try a ‘suck it and see’ approach.  If this treatment works for me, it points towards my problems having an autoimmune cause.  It has been tricky to establish this point because the tests I have had done have not shown auto-antibodies for the usual culprits.  The main one, the Acetylcholine Receptor antibody, is negative.  According to Dr Vernino, 50% of his patients with presentations similar to mine, are sero-negative.  That’s like one in two. The flip of a coin. That’s why I haven’t been able to just sit with a doctor response of ‘it’s not auto-immune’.  I guess I need proof that it is not, just as much as proof that it is, before I can put that theory to bed.

I am also desperately attached to the idea that my problems might be immune mediated.  I prefer this possibility to many, despite the fact that treatment is not without risks.  I prefer it because it actually has a treatment pathway.  That’s a hope-inducing fact. Apart from my pacemaker, I’ve been languishing in the progressive no-mans-land of Dysautonomia, without treatment, for five years.  My symptoms are ‘managed’ (ha!) with a range of medications.  But none of that is addressing the elusive cause.

If something was wrong with you, if it changed your life and had an impact on your family… would you be able to sit back and accept the line; ‘We don’t know the cause/it is too hard to find the cause/ just accept that you have this thing we don’t understand’?  Well, I can’t. I’d rather go through the frustrations and exhaustion of searching for answers than just accept the ‘We don’t know’ line.

And maybe that is a defect in my personality. Or maybe it is a strength.  Either way, it doesn’t feel like a choice to me. I welcome the opportunity to try methylprednisolone.  It is the first proactive thing that has happened for my condition in five years. And if it doesn’t work?  I really don’t know what is next. If anything.

Maybe that is when I have to look at accepting some things. And that makes me want to drop to the floor in a full tanty. So I’m not going to think about that unless I have to.  Is it wrong to search and search for a cause in the hope of arresting the nerve damage?  I’ve already seen the ways this has affected my body.  I don’t need an imagination, or the facts, to see where it is headed.  If I can find something that will halt the slide, I feel like I should throw everything into that search.  Isn’t it what most women would do?  It’s not just about fixing this for me, it is about finding the best way through the maze for me and for all the people in my world.  It’s not self-indulgent to think they need me.  They do.

What would you do?

Radioactive Pancake

On Friday, I was introduced to a new friend.

It was all part of my Gastric Emptying Study. The radiology department laced a pancake with radioactive isotopes and gave it to me to eat. They wanted to watch how well my body made short shift of my new friend. Considering what it was made of, it didn’t taste too bad, but I wouldn’t exactly have said that I wanted to hang around with it all day.  But regardless of my feelings on the matter,  my new friend decided that we had a special connection.   We were destined to be together, and four days later, here we still are.

Like the visitor who settles in for the duration, Radioactive Pancake wanted to stay close.  It liked me. It certainly liked my stomach. I managed to get it down my throat (without any maple syrup!  just dry old radioactive pancake).  Food, when you are fasting, is food. Hungry Rach is not fussy Rach.  So I swallowed that pancake down like a good girl. I sent it on its way.  But instead of moving on through, waving good bye at my epiglotis and seeing me ’round (sometime later in the bathroom) my new friend settled in for the morning.   It lay back there in my stomach, put it’s feet up and asked for a cuppa. Or five.

The idea of the test is that you swallow the pancake and they take pictures of you while you lie in a tube. Actually, you are not even in the pictures, the machine only captures the radioactive isotopes.  It measures where the pancake is in a series of shots. If your gastric system is working efficiently, after 2 hours, 90% of the pancake should have passed through your stomach.  If it isn’t, you have to stay for longer to get more photos taken.  Time lapse digestion. Or, more accurately, time lapse non-digestion.

I can only conclude that my tummy is a lovely spot to hang if you are a pancake.  That thing did not want to move. After a few hot drink inducements, and a few more hours, it eventually was persuaded to transit into the small intestines.  I finally got to leave the time-lapse-tube and go home.  It had taken a whole day.

Dear Radioactive pancake.  I know you are still in there.  I would like to suggest that perhaps you move to Russia where I believe there are all sorts of radioactive substances, somewhere in the vicinity of Chernobyl, who would happily befriend a pancake like you.  It’s been a ride, getting to know you, but I’ve got other stuff to be getting on with now.  ‘kay?

See ya later radioactive pancake-inator.  Don’t forget the toilet paper.

 

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The Road… is Never Long

There is this thing that happens when you get to hang out with a childhood friend.  The years melt away and you’re back at your pre-baby, pre-wife self. Just yourself. Who you were before your adult roles became the bigger part of your identity.  Before responsibility and change and heartbreak and  all the stuff.  That noisy stuff that makes the mirror blurry.

I spent the weekend with my friend, who also happens to be my cousin. She’s known me for as long as I have been alive and seen me through all kinds of stuff. There’s comfort in that. We know each other’s history from the time before.  We know the dreams we had and the plans we made.  We know the paths we travelled and the ones we didn’t. And here, on the other side of forty we still know who each other is.

Really is.

And that is a beautiful, comforting thing. We both lost our mums in the last decade. Our mums were sisters.  We talked long into each night about grief, being women, the legacy of the women in our family. Being mums.  Being us while we travel through the terrain of our days.  It is so easy as women to lose sight of who your are, were, your core self. Life gets so demanding, and you choose to prioritise based on your responsibilities.  The kids, your husband, maybe your job, your friends.  How often are you the last on the list?  Have you ever been at the top of it?

I remember scoffing at women’s magazines when I was a working mum. Make time for you! Look after yourself so you can look after them!  Yeah right, I would think. There is no extra cash for that.  There is no extra time for that.  There is no one who can take the kids just so I can have “me time”.  Not everyone can afford to be that selfish.  That’s what I thought ‘me time’ was.  Selfish. Unrealistic.  A pipe dream.

And then we got sideswiped by my health problems. And prioritising became about survival. Saving the energy for an ever-more-pared-down-list of the most important, essential, crucial tasks. Spending my ‘spoons’ on the family and getting through the day. Gritting my teeth to manage what small amount of work I could, pushing through the necessary tasks.  No room there for frivolous “Me time”.  Me time was suddenly in surplus; but it wasn’t soul food time.  I was busy working on getting through the storm of body issues Dysautonomia sends my way.  It wasn’t restorative or helpful time. Just grit-your-teeth-and-bear-it time.

So when my cuzzie friend and I hatched the plan to meet halfway between NZ and Perth; in Adelaide, I honestly doubted I would make it. I didn’t think I could physically manage two flights, the days between, the struggle and strain without all my home comforts.  But seeing Erica again was powerful motivation. So I proceeded to hope for it anyway. And it was worth it. It was restorative. Girl time.  The way we can talk about a hundred things and pick up the threads at random times without ever losing our place.  I held her in a hug and felt connected to who we were again.

Maybe you think planning some ‘me time’ or ‘girl time’ with one of your dearest friends is a crazy thing to do.  Maybe you think you are too sick, or too busy, or too tired. I did.  And I booked it anyway.  It was a huge weekend for me. As I sat waiting to board the plane home my eyes filled with tears.  I took myself right to the edge of my coping capacity.  I was spent. I couldn’t walk. I felt so disconnected, dizzy and tired. So worn. But in my soul?  I was fed with the joy of finding my old self again. There’s soul food right there.  Enough emotional energy to make it through the next stretch.

Even if it seems like a crazy thing to do, book out that time for you.  You need it. You may not know just how much until you are there and you see it; you, again. Looking back at you in the mirror.  Always there, just waiting for some quality time with you.

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I Get By

 

http://modernvespa.com
http://modernvespa.com

I’m in the fast lane on State Highway 1, but I’m riding a vespa.  Trucks scream past me, massive utes and vans blare their horns.  People yell out their windows and spew their exhaust fumes into my face, a passing hand flicks a cigarette butt into the jetstream.  I’m cowering in my seat, exposed and afraid.  It’s too fast, I need to pull over. I turn to see what is coming up the inside lane, trying to judge the gap and make my move.  But the traffic barrels past, travelling at twice my speed, shaking me to the last rusty rivet. My motor sputters.

Like any one charged with the care of a family, my hands and heart are full. The ordinary demands of everyone’s schedules, housework, managing the meals (and the biggest task: preventing the wholesale character destruction of my brood). Well, it can be overwhelming.  Add to that; a relative in hospital, a sister come to stay for for a few weeks, an aunty in town for a flying visit, a brother-in-law popping in to drop off some long distance baking from my lovely sis and a birthday for one of our kids.  I know it is just chance that so much has happened all in one week, but that’s how it has been.  And I’m not too proud to admit despite the loveliness of all that family time, it’s been a wee bit much for me. Read.  Too much.

This morning I woke to find the Hubster in the throes of man-flu.  It’s actually tricky to be a half decent nurse when you are feeling like crap yourself.  I tried to shake it off but I was afflicted with acute sympathy deficit. I felt like saying “drink a cup of concrete and harden up!”.  Which is awful to admit in black and white glyphs.  Makes me feel like a horrible person. But if you too have a chronic illness, this will be a familiar feeling for you.  In a perfect world, he’d never get sick unless I am on form.  Welcome to status imperfectus.

Within five minutes of wrestling some sweetness into my morning monosyllables, it occurred to me that the birthday cake must be baked.  Because.  If not now, then when?  The days tasks scanned in front of my mind’s eye.  A rolodex of prioritised procedures and diarised doings. I lurched into the day. About twenty minutes into cake bake time, my friend Flo rang.  She’s a good sort that girl.  I don’t ever have to pretend with her, so there was no breezy “MornING!” after I hit the green button.  More of a strangulated gargle. 
“I’m on my way”
she said.

Vacuum.  Dishes.  Table.  Mess.  Flo’s magic wand.  She keeps up a steady stream of chat while she bustles about my kitchen, deftly putting things away into the illogical homes she knows so well. She is canvassing me for my list of to-do’s.  Checking to see if there is any outstanding purge-material that needs expunging while she’s at it.  My sister arrives and makes us all cuppas; we form a plan.  It is lofty.  Do the shop.  Post a parcel.  Fix the phone.  I’m already daunted, because more than one task will usually best me.  She decides she’d better drive.  I’m grateful.  My vespa’s not quite up to it.  This engine’s seen better days.

We are half way up that mountain of tasks when I have a spill.  An autonomic crisis.  My heart is racing but my body can’t regulate the internal hike in temperature.  My vision shrinks to a small space, caught somewhere between each heartbeat and under each laboured breath.  I can’t.  I am stopped. Panic rises and I realise my legs are not going to be doing a proper propulsion for the dash back to the car.

Flo takes charge.  She grabs my list and does my shop.  Thank goodness for Flo, we need that stuff for the birthday dinner.  She makes it happen. She props me up on a trolley and bustles us all up the travelator and back to the comfort of the car. Cold air on.  Vomit bags located. Home. Bed.  I hear Flo and my sister in the kitchen.  I smell dinner, she’s advance prepping and getting my sister up to speed.  They ice the cake.  I close my eyes.  Relieved, conflicted, awed.

The roadside assist vehicle pulls up alongside.  My vespa is winched on to the tray and I am invited into the cab.  I make it to my destination.  But only because.

I get by with a little help from my friends.