Something Beautiful

When my kids were still really little, every night at bedtime, we’d sing a little song. It was always to the tune of one of my Mum’s old favourite church songs “Something Beautiful” but the words changed every night.  We’d take turns singing about what happened that day. Always the highlights.  It was a nice way to send them off into dreamland in a good frame of mind. It always started with “Something beautiful happened today…” and the rest would all depend on what loveliness had punctuated their day. I loved hearing their little voices sing about the things they appreciated most. It was often the little things.  “…I wore gumboots and splashed in the rain” or maybe “I got scratched by the cat, but I was really brave”.  Every line had to finish with the long ‘a’ sound, so words like ‘hooray’ and ‘play’ and ‘stay’ featured heavily.  If the syllables were too long for the melody, we’d race the words to fit them all in and collapse into giggles. Sweet moments.

Since my appointment with the Newro yesterday, I’ve been humming that little melody.  I feel happy and hopeful and positive.  Because something beautiful happened to me…

remission

The ‘Newro’ (new neurologist) was brilliant.  It was so nice to be welcomed into a doctor’s rooms by a person with a genuine smile and lovely nature.  He had read through my notes and proceeded to ask pertinent questions. We talked about the difference between then and now.  He was up to play with all the things the Immunology department have discussed with me. He explained that my response to the infusions was not a picture they had seen before with Autonomic Neuropathies, but it had been seen in other Neuropathies, like Guillian Barre Syndrome. So whatever the mystery-antibody  is that has been causing my problems was impairing my autonomic ganglia, but not killing them off. Which is why I have been able to regain normal bowel function and improved bladder function. It’s why my cardiac episodes have dropped off. Why I am feeling so much better. My nerves weren’t irreparably damaged, just interrupted… for a long, long time.

We don’t know if I will continue to feel well, or if my picture will be a typical auto-immune relapse/remission type cycle. But apparently the fact that I responded so rapidly to the Methylprednisolone  infusions (within days of my first dose I began to see a difference) is a tick in the box for a longer term remission! Oh my goodness I hope so! The Newro said we can’t crystal ball gaze, but if I begin to slump, and the slump lasts for weeks not days, I need to go back and see them. But in the meantime, no outpatient clinic!  I’m hoping that General Medicine and Urology will take the same view and I will begin a whole new letterbox experience.  No more appointment letters, confirmations, medical paperwork.  The thought makes me giddy (in the best kind of way, not the old way!).  I long for a calendar that is hospital appointment free!

Also The Newro has agreed to be my Neurologist if things go south again.  I am so happy about that, he seems a good sort to have in your corner when you need a super clever brain around.  He’s all things great doctors should be.  Compassionate, no hint of ego, thoughtful, responsive, kind, clever and thorough. It all makes a very impressive package. I hope there will be other neurologists who learn from him during his career, he has a wonderful approach and manner. I do wish I could bottle that and dose them all (well, doctors of every speciality) with the same qualities.  If that man ever ran for President of the World, he’d have my vote!

So my dear Dysautonomia friends, I don’t know if any of this will be helpful for you, but it has been for me. I feel like my battery is recharging. I am feeling better. The more I can do, the better it gets. In there among the good days there are still some crap days where I feel like I used to. It’s hard not to panic when that happens, but so far, every slump has been shortlived.  I wish I could tell you exactly what antibody and genetic disposition combined to give me the diagnosis I have had.  We haven’t been able to isolate or understand either. But for me, whacking the immune system with a sledgehammer has made a massive difference to my quality of life. I hope you find your answers too, whatever they may be. And if your picture is similar to mine, please get yourself to an immunologist!

Here is an instrumental of that melody. Something Beautiful, Something Good.

Kendall Carter: In the Pink

In the pink… an expression which describes the look of good health. But what if your health isn’t good? Can you still look gorgeous? My friend Kendall looks just like an exquisite porcelain lady doll. She is redefining what it means to be ‘in the pink’! She is one of the sickest people I know yet she blows my mind every time she posts a photo. So stunning! I am so delighted that she agreed to write a guest post for the ‘Meet my Peeps’ series, because I think her voice is so important.  But it hasn’t been easy, since I asked her if she’d like to do a piece, she’s been in and out of hospital at least four times.

Kendall, I so appreciate the efforts it took to write this piece for my blog.
Thank you so much! x

Kendall has a complex medical picture. She is diagnosed with progressive Autoimmune Pandysautonomia. It causes POTS, gastroparesis, subacute urinary retention, breathing issues, CIPO, swallowing difficulties, temp regulation issues, small fibre neuropathy, pupillary dysfunction, anhidrosis, IST, supine hypotension, orthostatic hypotension, syncope and the other usual autonomic dysfunctions typical of Dysautonomias. She also has Median Arcuate Ligament Syndrome (MALS), Hashimoto’s disease, demyelination disease, hypothyroidism, endometriosis, adenomyosis, chronic rhinosinusitis, chronic neutropenia, PCOS, pernicious anaemia and issues related to the malnutrition from gastroparesis.

And she is beautiful.  Read on, all about her journey into better self esteem and how she expresses her individuality through beauty, fashion and social media…

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Yes, let’s start this post bragging about what an inspiration I am and.. wait, what!? When did I suddenly become an inspiration? Beautiful? Confident? Calm? What’s all this about? Did someone start paying these people off?

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Let’s rewind. My name is Kendall. I have a chronic illness. It sucks. I spend a lot of time in hospital and an obscene amount of time in bed. But I also like to play dress up, usually just to go to a doctor, hospital appointment or even just if I’m staying at home, seeing no one apart from my significant other for a couple of hours when he gets home from work. At first I never questioned why, I suppose it was because my appearance was one of the only things I still had control over. I’m no great beauty and I’d never been the type to dress up, let alone slather on a full face of makeup and prance (well, roll) around in pretty dresses just because it made me feel good about myself. I was the jeans and t-shirt girl. The girl people would laugh at if they saw me in a dress. I actually recall quite vividly a friend stopping me in the street one day. She had a good laugh that I, for some unknown reason, had chosen to wear a dress that day! I didn’t wear a dress again for years. The quintessential tomboy, the shy little wallflower that wanted to perfectly blend into her surroundings… that was me back when I was healthy.

If my past self could look at my current self, health issues aside, I imagine she’d screw up her nose, call me too girly and make fun of me. PINK hair? Pastel at that! A floofy cat dress, complete with a bow tie? And what’s with all this damn lace everywhere? It’s almost as if I’ve done a 180 in a couple of years. It all started when a group of wonderful friends from a support group got together to organise a hairdresser to come to my house. She dyed my hair a beautiful pastel pink that I had been considering for quite some time. I had just gotten an NG tube and was curious about this pretty pastel hair trend that was going around. In the back of my mind I wondered if I could be the girl with the pink hair, instead of the girl with the feeding tube hanging off her face. It worked, and it was probably the best thing that ever happened to my self-esteem. You may be able to tell from my mentions of wanting to be a wallflower but I was, and still am to an extent, a very timid girl. Standing out was not my thing. I’d never dare admit to wanting to wear those pretty, glittery shoes, that beautiful floral dress with lace inserts or that adorable clip on hair bow back then. They were for other people, no matter how much I lusted after them.

Show the world you're still you, because(1)

I believe that my chronic illness, starting with being brave enough to go ahead with the pink hair, opened up many doors for me in regards to my self-image and self-confidence. I’d lost so much. I felt there was nothing I could possibly gain after the trauma of losing my health, my job; my whole life, as I used to know it. Sounds overly dramatic but that’s what it was. A sudden onset for me. All my losses happened, quite literally, overnight. But out of this mess, I gained confidence. I finally gained the tools I needed to not care so very deeply about what people thought of me and how I appeared to the world because after what I’d been through, any opinions on something as superficial as my appearance could hardly mean much at all. Really, what’s someone asking if my hair colour was a dare? Not much compared to coding yet surviving on an operating table in the middle of a life-saving operation. At 30. Yeah, it’s totally incomparable.

With my slow but steadily rising new found confidence I started shyly posting selfies of myself when I was a bit dressed up. Selfies were not something I’d usually do! I’d always worry too much about people thinking I was narcissistic, or that I wasn’t pretty enough, and all those things that people with low self-esteem think. My confidence took off even more as I received a few compliments here and there and started connecting with the chronic illness community via social media through images. Images of the good times and the bad. The dreadful unwashed hospital selfies, the tubes, the lines, the scars …but also the nicer times, of dressing up, of makeup, of pretty hair and cute collectibles. I’d become this girl with the pastel pink hair, fancy dresses.. and a NG tube on my face. Somewhere in there, I finally found the confidence to be me even with a feeding tube prominently displayed! Without knowing it, seeming to also inspire some people along the way. No one just considers themselves inspiring and rarely sets out for that to be their goal. It just.. happened. In finding and helping myself, I’ve somehow helped other people and even if that’s only a couple of people in a small way, it’s certainly more than what I was doing before.

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There are several movements with a focus on looking good or glamourous, even though you feel like you’re falling apart, that have taken off on social media. Karolyn Gehrig’s #HospitalGlam  (and you can find her on Instagram @karolynprg) is the most widely known. Some other friends or followers have created their own hashtags or names for modelling while on bed rest, such as #bedrestmodelling. When not feeling too great, people are creating poignant portraits that are beautiful in many different ways. I definitely recommend checking out some of these hashtags if you own an Instagram account.
(Ed: and you can find Kendall’s instagram account here: @Kendelfe it’s a confection of pink!)

Show the world you're still you, because

I personally just like to have fun with my style and there aren’t too many times where I’ll refuse to waste the extra energy into putting on the best damn dress I own, spending probably a little too much time on my makeup and stumbling into my doctor’s office or hospital appointment looking like I was going out somewhere special. Some people might say that their ‘spoonsmight be spent better elsewhere and I can’t argue with that. Others may say that their doctor may not believe that they’re ill if they don’t look sick but my argument is that if you have a good doctor or specialist, they’ll know. My doctors know me well enough to know that if I’ve no makeup on then I’m not doing too good at all. One claims I have an “Emergency Department face” when I walk in and will know straight away when things aren’t looking too good for me, even if I am dressed up to the nines. I do believe that attention to presentation can play an important part when it comes to others seeing how to feel about yourself as a person, and in showing that you’re still you and (as @minadraculada said in one of the opening quotes to this article) that it’s not over bitches, that you’re still you, still have control and that you’re still standing.

In closing, I suppose I wanted to express how you can still make gains even when you’re quite severely ill, whether that be through your appearance and fashion, a new hobby, new found friends or something else. I also wanted to show that just because we feel ill doesn’t mean we need to act or look a certain way, the way society often portrays the disabled and/or ill. Show the world you’re still you, because you’re still beautiful even if your body might be a bit broken. My only regret through all this is that I didn’t find the confidence in my appearance that I have now back when I was healthy but ironically, if I had remained healthy, I probably wouldn’t have.

Thank you for reading, and thank you to the fabulous and always lovely Rach for posting my piece!

Inside Out

 

_Take off the jewellery.Just be you_ she(2)

I wrote about doing something way out of my comfort zone the other day.  You can read here about how I submitted my photo to Autograph’s online curvy model search. And got a call about being shortlisted (eeeek! At last, an appreciater of the curves!) I wrote all about how I was getting ready to go and have my photos taken yesterday.  It was all a very welcome distraction from some of the other stuff that is going on for me at the moment.  You can read about that too, here if you are interested in lady-business.  All’s well that ends well.  I had my surgery this morning and happily had zero problems with the anaesthetic.  I’d like to thank my six months of stability for that.  Woohoo!

So while I am lying here post op, letting my lady-business recover, I thought I would tell you the story of my day yesterday… thanks to those of you who messaged me to say you wanted to hear all about it!

I was awake hours early, staring up into the darkness and wondering how it could be that I was seriously going to rock up to a modelling agency, big butt and all, and have my photos taken. It filled me with terror and delight and self-doubt. But I let it all the feelings wash over and through me, proud that I am big enough and old enough to know that feelings are fickle.  I reminded myself of the facts.  I did this to myself. I want to try this. They want my photos. I’m me and that is enough.  And I went through the poses in my head, trying to remember everything Tyra Banks ever said about modelling. Ha!  I lay there in the dark smizing at the ghosts of insecurity dancing around my bed. They weren’t impressed that I wasn’t listening to them. I lay there humming in my head “I’m a MO-del, you know what I mean…?”  and hamming it up for the imaginary camera.

I had an early appointment up at our local salon so my hair would look like I was naturally bouncy.  My lovely hairdresser Eff, sent me out with one of those “oh, this hair? I just showered and tossed my hair in the breeze… ” hairdos.  Good hair makes you feel so confident, doesn’t it?  I came home so full of it that I thought I’d take a selfie. I looked up at the light to see where would be a good spot to take it… and just as I was thinking ‘over there…’ my equilibrium woogled it’s wiggle and I took a very inelegant skate along the muddy ground. In my fancy hair.  And my ‘outfit number one’. Because pride does literally cometh before the fall!  Thankfully, the fall was small. And there was loads of time before I had to leave. I cleaned myself up, dusted off my pride and all the grass stains and mud (how ladylike) and took myself up to bed for a little rest.

My best friend Flo arrived to pick me up. She’s so wonderful.  By then my nerves were rising and I was wondering if I should abort mission.  She’s not gushy that girl, so when she said I looked good; I felt a million bucks.  Good hair and compliments you can trust. Essential components for feeling great! She had made me a coffee to-go and so off we went.  Have I mentioned how wonderful she is? She’s deep in the thick of planning a triple birthday party for her kids, and she took time out to be my wheels. I loves her.

62 Models is in a beautiful brick building surrounding a little courtyard. Access to the agency is up two flights of narrow, steep, stairs.  If you are a Dysautonomiac, you will understand why I stood at the bottom of those stairs, quaking in my ankle boots.  I had been warned.  A friend from my online patient forum is a model with 62 Models (the tall, slender kind).  Helena had already messaged me with reassurance, parking tips and stair warnings.  I stopped at the top and used my phone to snap shots while I caught my breath and un-dizzied myself.

Voila!  The door!  Can you imagine, standing at the door of a modelling agency, how much hutzpah it would take to open that door? It swung away from me and inside were five huge flat screen computers around a large table.  Transparent furniture and a funky chalkboard wall. NZ Fashion Week and other campaigns scrawled across it in white grainy chalk.  Behind each screen, an impossibly gorgeous person;  among them, Katie of the groovy glasses, Kelly with the brilliant white smile. And behind them, a wall of more gorgeous-person-photos.  All their eyes seemed to turn in my direction at once.

“Hello!   I’m Rachel Cox”
Kelly, a model, mum and marathon runner, smiled at me and I felt instantly welcome. I’ve seen her in so many catalogues,  but she is even more beautiful in real life than in print. Wow.  I felt like I knew her just because her face was already so familiar. It put me at ease. And I guess we both run marathons, just of different kinds.  😉

She introduced me to the others and explained that the willowy, auburn haired stunner to the right would be taking my photos.  Her name was Marijke. The bits in between the introduction and the end of the photos are all a bit of a blur!  I didn’t feel afraid, just wanted to do the right thing. I stared down the barrel of that camera and thought ‘…here I am.  This is me’. Marijke gave me excellent feedback and advice. It was fun and self-affirming. It was good for my soul. If you are wanting to look your best in photos, here is some of Marijke’s advice… ‘think friendly thoughts and it will show in your expression’ and ‘being natural is beautiful, so just be you’. She was so lovely.  After an outfit change I had to make a little intro video.  I’m not very comfy being on video, are you? Yikes.  I think I managed; I hope they will see my enthusiasm in my short few words.

_Take off the jewellery.Just be you_ she

I told Autograph that I would love the opportunity to represent New Zealand in their curvy model search. That’s it.

But for me, doing this thing is about overcoming all those inner voices of limitation. No, you can’t. No, you’re not enough, no you shouldn’t put yourself out there, no. Just, no.  Women, especially curvy girls, do themselves such a disservice by remaining hitched to those voices. They’re just insecurities. We know we are far more powerful, interesting and significant than those voices tell us we are. We are much, much more. Those little, insignificant mewlings that we have listened to for so long have become loud and insistent because we let them. Well, I’m here to tell you that those ridiculous little voices are actually very small when you stand up to them. They shrink. They scatter.  And what they leave behind is the kind of person I want my daughter to see me be.  Bold. Beautiful. Brave.  And maybe just a little bit bonkers!  Tee hee!

_Take off the jewellery.Just be you_ she(1)

If you are a curvy girl and are thinking about entering Autograph’s Model Search, you can do it here. Do it for you.  Do it to send those insecurities scarpering. Do it because you are beautiful, just as you are. Exactly the shape and size you are.  Not because of your body, but because of who you are. If I can do it, you can too.   Marijke’s photos arrived this afternoon and the woman I saw in them surprised me. I’m wearing my inside, out.  And I like it.

(thanks Michelle for sending me this song the other day!)

Bravo, Body!

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My fingers sink into the springy grass.
The broad flat blades are baked from the equatorial sunshine.
There are people everywhere, milling around the edges of the sports field;
the air between me and them shimmers in the fierce midday heat.
White painted parallel lines disappear ahead to a point in the distance.
I can feel the nervous tension of the other kids beside me; calves bracing,
ready for the sound of the starters gun cracking the air.
I lift my head and fix my eyes on the end of my lane.  And we’re off!
My strong, long legs pump up and down and I realise I am gaining.
I take a gulp of air, reaching my arms and legs longer and further,
pulling the track in toward me as I run.
The wind pushes my hair back from my face and smarts my eyes.
I am in the lead!
I turn to see who is hot on my heels just in time to catch them overtaking me.
Go faster!  ‘Run, Rach… just gun it!’
I come in second.
Elated with my efforts.
Harried hot breaths heaved into my lungs.
I slap my legs in appreciative awe. I had no idea they could do that!
I am grinning; I race back to the marquee, punching the air in exaggerated victory.
I am Wonder Woman, with wings on her heels.  I can fly!

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When I hear the term ‘body confidence’ I usually conjure an image of a woman in a bikini, walking that terrible distance from towel to the water’s edge at a relaxed saunter.  She isn’t tearing into the break, desperate for the water to hide her sunless legs.  She has all the time in the world to endure the unflinching gaze of other beach goers.  Maybe she pauses at the water’s edge to lift her toddler from her hip, to laugh with them as their toes touch the glittery cold foam of the ocean.  She has body confidence.

Or that voluptuous wonder of a woman on the pages of the catalogue.  She’s all curve and sass and I want to be her.  Her head has that little tilt that says she knows people recognise her beauty.  She’s comfortable with her shape and her style.  She isn’t plucking at her clothes or shrinking herself into a dark corner. The easy smile says it all, she’s full of body confidence.

Or, I remember what it felt like to be that kid, flying down the sprint lane with the wonder of legs that take you where you want to go, at speed, barefoot.  Confident in the knowledge that all you have to do is look at that spot on the horizon and go for it.  Your body will run you there, your feet will fly you where you want to go. Or maybe swimming through the water and arcing up to break the surface with your face. Climbing a tree and letting the wind blow your branch like the mast of a tall ship, holding on one handed, far above the ground.  Body Confidence.  A complete unswerving belief that what you expect your body to do, it will do.

Since my first Tilt Table Test, I have had confirmation that true body confidence might be a tad displaced.  I learned then, that my autonomic nervous system was struggling to regulate my heart normally.  After nine minutes upright, my heart stopped beating.   It’s the reason why I have a pacemaker now.  It wasn’t the first time it had ever happened, by any means.  But it was the first time I understood what was happening with my body.  It made me ‘body nervous’.  As my situation has progressed, the nervousness has grown.   I am a planner, I like to do as much as I can, whenever I can.  I love heading out with my family, if just to enjoy that undistracted time in their company.  But I have to plan, make contingencies.  Always wondering “Will my body manage that?”  “Can I cope with that today?”  “Have I got enough energy in the tank to keep myself running for that long?”.  I miss body confidence.   I miss the feeling that I can enter a store to buy Christmas gifts and walk until the list is complete.  I miss the feeling of swooping down the slope on my bike. Of being able to stand by the sidelines to watch my own daughter run her race.

Today, I’m off for another Tilt Table Test.  For a Dysautonomiac, this test is a gruelling event.  You can find out more information about how it is run, here.  But in spite of the challenge of having one, it is one of our most effective diagnostic tools. This time, we’ll be using the data as a baseline for before and after my first lot of steroid treatment. My pacemaker will probably get a chance to show off it’s skills, and I am so glad to know it is there, ready to kick in if needed.  But nonetheless, I can’t shake this Body Nervousness this morning.  If I could just run away I think I’d be sorely tempted!

Do you feel body confident?  Or are you nervous about what your body throws your way?
This morning, I am wrapping my arms around my bod. I am going to thank it for all the things it does well.  To remember again, all the complexities it is busy with while I am getting on with life. I’m going to celebrate what it can do and forgive it for what it can’t.  Bravo, body!  You really are remarkable, all the things you do; all the things I get to do because you carry me around.
Thanks bod. I know I complain about you a lot, but I am glad I’ve got you.  Let’s get through this thing…

A Midnight Clear

Every year I find myself time travelling over our box of Christmas decorations.  All those handmade kid decorations and the sentimental ornaments that take me back to times before.  There are the annual ornaments I always received from my Mum, a tradition now adopted by my sister.  There are the ones from children I taught, and older ones too from so long ago I barely remember their origins. Garlands and baubles and hand embroidered love hearts.  Toy soldiers made from pegs and pipe cleaner reindeer. Jingle bells from the first year I was married and a tiny wax baby Jesus nestled in a walnut shell.  I watch the kids unwrapping each one and remembering, smiling as they feel that special Christmas magic.  It’s a time of year I adore.  The carols play us the lullabies of yule and this mood, this palpable feeling is the reason why I love this season so much.  Family, love, memories, togetherness.

Only this year, I can’t manage to trim the whole tree.  December First happens to have been a very big day this year and we are all a bit tired.  The children lift and bring me each decoration and my arms shake as I hang them; just so. I push myself far beyond my capabilities. My husband puts the kids to bed and returns to find my head in my hands.  I am spent.  It’s not just the emotion of Christmas.  I literally can’t move my legs.  The weakness and pain radiates down my legs pinning me to the chair.  I stare at the tree.  The lights blink through the blur of my tears.  It’s Christmas, but not as I know it.  I don’t understand this pain I am having, the weakness and trouble with walking. I am afraid of it. It’s not a usual Dysautonomia symptom.  Walking is not mediated by the Autonomic Nervous System, but the Central. I don’t understand and I don’t want to even try. I’m just weary.  I am upset that even Christmas decorating is now tainted with the wrongs of this body.  I try to make the tree come back into focus.  It’s beautiful.  It’s not finished… but there is tomorrow.

My favourite carol floats through the living room. My tiredness overwhelms me.  Time for a silent night.

I need a silent night, a holy nighttoHave you heard this beautiful carol?
It’s the perfect Christmas-carol-for-mummies.
Here’s the link if you’d like to have a listen.

Have you been trimming your tree, too?

Being Green

Some days, it’s good to remember, that even frogs feel this way.

Jim Henson, you were a genius.  Kermit the frog sings ‘It’s Not Easy Bein’ Green’

 

(here are the original lyrics if you want them)