…You’re only crazy if you answer back.

I’ve been hiding.

Sitting with the desire to create and the inability to do anything. My body and I are at war. I never meant it to be this way and so I’m working on a peace treaty. I will let it rest without stressing over what ‘I need to do’ and it will let me create despite pain. I will give it days off and it will let me go out of the house for more than groceries and doctors now and then.

I know at the end of the day my body will dictate what happens everyday of my life. But maybe, if we can stay in conversation we can live happily together for a long long time. This does of course mean I’m in conversation with myself…

… let the conversation begin.

All Images, Conversation 1 : Prayer flags 

By Rebecca Fordyce 2013

Love B xox

P.s. For those that gave me wonderful suggestions on what to write about, by way of thanks I give you Viking Kittens ... The Immigrant Song as animated by the lovely rathergood.com lads ;) 

Confessions from a lone snail

This little snail, had no sooner decided to climb when, out of nowhere a boulder rolled in to block her path…      

       

                              The first of many I suspect.

I think I have been ruined by television. I wouldn’t be the first. It seems I suffer from a kind of loyalty that others see as: silly, immature, ridiculous?

Perhaps it came from too many hours watching heart felt moments on the goggle box? A child of the 80’s learning what it is to be a ‘BFF'. Perhaps I’m just hard wired this way? But maybe I can unlearn?

After all I managed to unlearn the notion of ‘best friend’. Many an hour spent weeping as a child wondering where this magical best friend was? Why didn’t I have one? What was wrong with me? What was wrong with me is, I refused to play the gang games of small children (the anxiety filled nausea they induced was a quick deterrent), ‘I won’t be your friend if you don’t…’ ‘ You can come to my birthday if you…’.

Of course these games don’t stop in primary school. Maybe they never stop? It’s not like television; The friends that stick by you no matter what. The friends you can argue with and yet your friendship grows stronger. If you have one of those friends then count yourself blessed.

Relationships are hard, and perhaps I make them harder? I like to think the best of others. I like to assume that I am loved by those I love and to allow their behavior to go unqueried directly. I like to create stories of understanding, making assumptions about why they have acted in certain ways, assuming that something I have done has created the situation or that because I feel a particular way that it is a defect in me. My practice is flawed.

I know only they can know why they did something. And it is only when I comfort them with it that I can learn their motives. Or not, It takes a remarkable person who when confronted will examine and answer with authenticity.

Then lets add to the relationship the weight of chronic illness. There is so much literature out there on the difficulties of maintaining relationships (both romantic and friendly) while chronically ill. There is most likely no need for me to discuses it here. But bear with me, this is the bolder I’m trying to climb.

Chronic illness in it’s self is incredibly isolating. You are no longer able to interact in the same ways and to the same level as you once were. If you are unable to work (as I am) you do not even have the day-to-day interaction with work colleagues. There are days, weeks and for some I imagine moths that go by without speaking face to face with a single other person. It’s a lonely path. I can count those that have stayed genuinely close on less than one hand.

Being chronically ill, friends make assumptions about you. The assumers seem to fall into two main categories for me. Those that choose to see my illness as an excuse I use to get out of things, and take it personally if I have to cancel or choose to decline their invitation. And those that don’t ask because they assume I will never be able to do anything because I am ill or they think I will end up sicker. Both are not always forth coming with their feelings about the situation and so often they are gone and I know not why?  I’m starting to feel as if I need some sort of radar that allows me to pick up on this quicker and confront it sooner. That is, If I can stop telling myself stories ;)

So if this strikes a chord with any of you out there who are my or a friend of someone else who is chronically ill, please hear this. Know that if I cancel or have to choose to not do something I am very sad (having to cancel often brings about a session of frustration crying even when the person is completely understanding and lovely about it). I want nothing more to be an active part of my friend’s lives. But sadly sometimes my body will not let me be there.  On the other hand to assume that I can’t due to my illness is to see me as my illness. I know my limits and I know when it’s worth breaking them. I’m responsible for myself and perfectly capable of knowing what I can and can’t do. When assumptions are made we all miss out.  Perhaps a way to think of it is, it is my practice to learn to decline with grace and it is your practice to learn to accept those declines with grace.

There is another group of friends that I struggle with. The non-confronters. They know I am ill but they don’t want to know about it. They are not entirely comfortable in my presence. Many talk constantly. I often wonder if they are just hoping I won’t die on them or have some sort of medical emergency. But then there I go telling stories again. I don’t know why they are this way around me. Some just avoid me completely. And often I’m left feeling like the person that was me before I became ill never existed. All those happy memories of time spent together … well I guess she died? On the upside I already know what side I’m on in the zombie apocalypse ;)

But I shouldn’t make light. It hurts deep. So again if you are one of these, here’s what you need to know. I’m not my illness, but I have an illness. I’m happy to answer any genuine questions anyone has about my illness. I’m still learning to do this so if I stumble over words forgive me. I know what I need to do to keep me well and I know when I need to ask for help. I know for myself, having meet others with illnesses different to mine that understanding what to expect means I can fully let go of any worries about how to help them should the need arise. And generally speaking the need doesn’t, other than to carry something or walk a little slower or take a rest or be a compassionate friend. 

If it is none of these things and it is simply that I confront you with your immortality or the fragility of a healthy life and these things make you feel uncomfortable? I’m truly sorry and sad. It is your personal journey, something only you can confront. Know that we all die, some just earlier than others. And we all get chronically ill, It’s just some of us get to spend decades in this state and other pass through quickly.

Now back to my flawed practice. Recently I have found myself in an odd place with some friends. I’m not going into details, sorry. I have no intention of turning the ‘Interwebs’  into a courtroom. I wish only to express authentically the madness that is my thought process at the moment. So…

It could be that I have been counting people as friends that in fact were more acquaintances. I don’t truly believe that to be the case, as there have been so many life events that I have shared in with them. Maybe it’s back to the old assuming those that I love, love me in the same way? Or they have the same sense of loyalty? Maybe my sense of loyalty is antiquated? Maybe they fit into one of the categories talked about above? Maybe we have become part of the facebook trap (the old, Just because you see my comments on my life or my blog posts doesn’t mean we have had a genuine interaction or that you know what is going on in my life)? Maybe they moved on and I didn’t get the memo? Maybe they have been feeling that I’m a crap friend?  A judgmental self-centered bitch? Maybe I expect too much? Maybe I don’t expect enough? Maybe I should have confronted this a lot sooner? So many maybes …

   This bolder is: a heart in turmoil; A mind that won’t find peace; It’s tears and sadness and morning for things lost; It’s abandoned and forsaken; It’s wanting to understand when there doesn’t seem to be a way to find a truth… an answer; It is pure rage creeping in where it has never been before; I want to scream and rant and tear my hair; It’s uncomfortable and feels too dramatic; it’s not who I want to be; I can’t hold it in and I’m struggling to sit with it; a crazy maker swooped in and pushed this bolder in my way with glee in his eye, and then, perhaps, that crazy maker is me; I want to rise above it and find equanimity; and yet here it is, it is me. Raw and bruised and finding out that even though I have experienced many heart breaking things it doesn’t make me an expert in quick peaceful emotional wound healing techniques.

Love B xox

P.S. If you want to understand a little better what it is like to have a chronic illness or your having trouble explaining it to loved ones then consider reading Spoon Theory. 

Little Snail

Little snail

Facing this way

Where to now?

Kobayashi Issa (1763-1828)

When did I get sick? To tell the truth I don’t really know. There have been little ‘things’ throughout my life that hinted towards my various medical conditions. So you could say I was born ill and it wouldn’t be a lie. But normally I answer this question in relation to when ‘the sick’ began to effect my life to a point of losing aspects of ‘normality’. And so I answer November 2008.

The first big hints were a couple of years before, but for me it has always felt as if I turned 30 and the rug was pulled from under my feet.

In the world of the chronically ill there is a phrasing often used to communicate with each other how long we have dealt consciously with our illness. We say “X years sick”. When someone says 10, 20 30 years sick, It allows us to see that it is possible to live a long life with chronic illness that still has meaning and joy in the face of suffering. And when we say 1, 2, 3 years sick it’s a way of saying “I’m new to this, reassure me”.

I can now say “5 years sick”.

I don’t find this depressing at all. It feels like a helpful milestone. I have lived successfully with this illness for 5 years. I have navigated loss and celebrated gain. I have maintained independence while learning to ask for help and lean on those who love me.

5 years sick is feeling like a turning point.

I have taken 5 years to learn I am disabled. To stop pushing myself to do the things that no longer serve me and learn to pace myself.

I have taken 5 years to morn my loss of function, to morn the potential me’s that will no longer be.

I have taken 5 years to let myself just sit. I have let myself observe all the emotions: frustration, anger, panic, grief, love, joy, fear, that arise on a daily basis.

I know that all of the above will arise time and again as this disease progresses and I ‘lose’ more. But I have taken 5 years and know I can adapt and I can deal with it.

5 years says “this pain is here to stay and you can’t sit still always”

5 years says “time to put down the other foot, stop standing on one leg, the ‘you’ is stable in this shaky life”.

5 years says “time to move forward with those dreams”

Mount Ruapehu

by Rebecca Fordyce 2009

little snail

inch by inch, climb

Mount Fuji!

Kobayashi Issa (1763-1828)

love B xox

p.s. I first came across Issa's haikus regarding snails in the fabulous book The sound of a Wild Snail Eating by Elisabeth Tova Bailey. An amazing book about snails and the authors relationship with one friendly wee specimen while bedridden. Also, in writing this post I remembered an article by Toni Bernhard (fabulous author of the fabulous book How To Be Sick) called 10 tips from 10 years sick, both book and article a well worth reading. Enjoy :)

Catch me if you can

I've been hiding...

Hiding in the real world, avoiding the blogosphere.  Alot has been going on in my world of medical misadventures. But mostly I have been thinking deep thoughts that have not yet formulated into words. 

My hiding has made me feel like I have to write an epic story detailing the last few months to catch up... but I can't find a story worth reading. So much, blah blah blah doctor, blah blah blah procedure, blah blah blah medication, blah blah blah cupcakes. (yes there were cupcakes ;) ). So instead I thought I would give you the highlights.

There is a myth we are lead to believe that is 'if it’s there, you can see it on an MRI'. Sadly this myth is also firmly believed by many doctors. It’s not their fault, but it is frustrating.

MRI Abdomen - looking for internal lipoma 

I knew this fact before I knew I had DD (Dercum's Disease). I learnt the truth from literature on endometriosis (which I also have). It is for this reason, that the only way to confirm endometriosis is to do exploratory surgery.  You just cannot see it on imaging (with the exception of a few adhesion and endo clusters that a very large but seem to also be very rare, I believe?). And believe it or not Lipoma are also incredibly hard to see.  I had an abdominal MRI to see if there were any lipoma in my organs that would prevent me from having full body compression. What it’s not good at seeing is lipoma in the adipose (fat) layer external or internal. It makes sense in that we are asking it to differentiate fat that is different at a microscopic level (DD fat) from fat that is normal, while they are hanging out next to each other.  This is further complicated because most lipoma are encapsulated, which means they have a kind of skin to them. And sometimes  they can pick up where the capsule is. But in DD lipoma are not always encapsulated. They call them fat pads. Attractive huh ;) You can feel them because they are harder than the fat around them. (Disclaimer... I'm not a radiologist and this is entirely my guess as to why you can't see them. If you know of any literature that explains it please tell me I would love to read it)

So the results… Yay there are none in my organs! It is inconclusive for other internal ones and does not mention external. Sadly the report has been interpreted as I have none in my abdomen despite being able to feel them and the pain they cause. Therefore no full body compression. They did find an adrenal tumor which I will talk about in a bit.

MRI Abdomen - Looking for tumors

I seem to be a well pack terrine based on many of these images. But I'm making assumptions about the amount of intra-abdomenal fat, which might not be what I'm actually seeing here. Sadly I don't get a blow by blow report about what I'm seeing.

Pneumonia- Slow loss of breathing capability

And then ... Pneumonia. It really highlighted how many of my symptoms are sernonomys with other illnesses. Outside of the constant trouble breathing and the forgetting I’m ill and trying to do something only to have to sit down halfway across the room. The fatigue, the chest pain and general feeling crapy aspects are all part of Dercum’s Disease. In fact if it wasn’t for the rattley chest I probably would not have realised there was anything else wrong. This is a concern because if I was to have some other medical condition with similar symptoms I might not realise. For example, not often a month goes past where I have the symptoms of a heart attack. Numb left arm, breathlessness, crushing chest pains. I’m hoping that a heart attack pain would be worse than what I’m used to but hey you don’t know until you know.

So that Adrenal tumor I mentioned. I was sent for a CT to confirm it was nothing to worry about. Turns out adrenal tumors are very very common. Many people don't know they have them until they are picked up during some other investigation. The CT combined with bloods have shown that at the moment it is nothing to worry about. But given the nature of the DD we are going to do a follow up MRI in 9 months because while they can tell it's not malignant all they know is it is a tumor of some kind on my left adrenal.

CT looking at adrenal tumor

 I have know idea from the images where it is so I just choose one of the cooler images ;)

CT looking at adrenal tumor

 what it did confirm is I did have pneumonia

Endometriosis! It's back with a vengeance. Not that it actually went away. But the symptoms had been reduced greatly since surgery in 2009. Because DD is very reactive to surgery and because I have chosen not to have children (so don't need to have surgery to protect fertility) surgery is not an option. I was told that thanks to the DD I have one more gyne operation in me and it will be a full hysterectomy. I knew this was the case but, having the reality spelled out by a doctor brought a small surge of grief, I will never be a mother. 

Ultrasound showing nothing abnormal, as is the way with endo

So rather than go straight to surgery, It's hormone replacement time. I'm on 40mg orally of provera a day (the normal dose given as an injection for birth control is 150mg every three months). So far so good. I have had minor side effects but I'm hoping these will subside over the first three months as my body re regulates.

And then... I got older :) my birthday was filled with dinning out. I wanted to have a party but the adventures prior to that day meant I had no energy to organise anything. 

Birthday brunch - Elements cafe, prawn and fish burger and chips 

Birthday Dinner - Chameleon Restaurant 

(for some reason I wasn't very on to taking photo's before I ate lol) 

this was scollops on cauliflower pure with pineapple and shoots 

Birthday Dinner - Chameleon Restaurant 

this was Akaroa salmon with kumara mash and apple chilli salsa

Birthday Dinner - Chameleon Restaurant 

this is valrhona white chocolate parfait with raspberry coulis,

 dehydrated raspberries and preserved orange rind

And then I got wired... Heart palpitations. I’ve had them on and off most of my life, as I guess most people have experienced one or two? Recently they have increased. So for six days I got to wear a heart monitor.  A dinky wee device that attaches to you via three electrodes. One in the middle of your chest and two under you bust line. When you think you are having an 'event' you press a button which sets the machine to keep the previous minutes recording and proceeds to record the next minute also. I suspect this will come to nothing, it was done as a precautionary investigation because DD and heart problems seem to go hand in hand as far as I can tell? 

Heart Monitor 

Things I learnt while wearing the monitor: I have way more ‘events’ than I first thought but never managed to catch a big one. I’m reactive to sensitive adhesive and still had marks a week later. My ego is rife – thinking an attractive man is looking at you with approval, only to realise you have taken off your scarf because you are two hot and he is trying not to be obvious as he checks out the electrode in the centre of your chest.

All this electrode business meant I needed a joyful outing. So Mum and I decided to stop in at Sweetpea cafe in Petone on our way to do Mum's Christmas shopping. The result... 

An amazing passionfruit cupcake from Sweetpea cafe

And then we had to make a booking for high tea the following Friday becasue they told us they dressed up in vintage 50/60's clothing to serve us High Tea. So one week later a little party of three (Debbie, Graeme and I ) experienced bliss. (needless to say it has been a couple of months of dietary misadventures, sometimes a girl's just got to eat cake ;) )

Sweetpea cafe - Wedding tea 

Sweetpea cafe - the huge spread of deliciousness

 (that is followed by your choice of cupcake) and my beautiful mother 

Sweetpea cafe - my favorite parts of the decor

Preserving jar lights and secret buttons stuck to the walls and floors

So that's what I have been up to. What have you been doing?

Love B xox

  

No lycra required ... here we kick butt in wool!

Sometimes you stumble on something that brings you joy. Not the type of joy I perhaps should aspire to (there’s no enlightened being here), but a skipping jumping material based joy full of colour and texture and self expression. For some they find it in the dusty covers and smooth contours of old vinyl records, or a books ancient typeface; for others it might be a model plane, vintage car or the perfect teapot. For me it falls firmly into two categories stationery and all things clothing. In particular hats, but more about them later.

So, what does one do when one can’t afford (both physically and financially) to shop for clothing items on a regular basis? Well, I like to see what others are wearing. 

Now wait a minute! I’m not talking perusing the pages of fashion mags or flicking through celebrity websites or even being stuck to the couch watching E TV. Fashion is not for me. Fashion has it's beauty but it’s restrictive nature does not appeal. I’ll never be that size, shape or colour; nor have the money to be 'on trend'. And when it comes down to it a lot of it is not 'me'. 

No, what I crave is style. The classic glamour of movie greats like Audrey Hepburn; the flamboyant fabulousness of Lady Gaga, David Bowie, Auntie Mame (as played by Rosalind Russell); vintage: shapes, fabrics, ideals, mashed into an individuals personal style.  And that is how I came to stumble across the fabulous Sarah and her blog and shop Misfits Vintage.

Recently I have discovered that Sarah is not only a beautiful talented woman wrapped in the most exquisitely put together vintage outfits but also has magic powers by way of a magic poncho (though I suspect she is magic without the poncho ;) ) that allows her to put smarmy uncompassionate doctors in their place! Here, you should hear the story straight from her ;) … (warning! this an't no G (rated) thing baby)

I know right! Don’t you wish you had your very own Sarah to take with you on your medical misadventures? I know I do and I had to tell her. So I did and to my amazement she offered to send me my very own poncho of power!

So this post is by way of thanks and homage to the lovely Sarah. …

Firstly you should know that no only did I receive a fabulous 70's poncho but also a pair of hop earrings, wooden salt and pepper shakers, a tea towel displaying eucalypts trees of Australia edged with crochet and a HOT DATE inscribed with love from Sarah. Here take a closer look...  

The poncho and I frolicking in the garden

(Ok so more propping myself up against things but my heart was frolicking I swear )

The poncho, sticky V2 and I strike a pose

We are quite striking  

An indoor close up so you can see the happiness 

I wore:

Shoes, under skirt, singlet - retail

Compression stockings arms and legs - government issue

Dress and head scarf - Vintage op-shopped 

Poncho of Power and hop earrings - Gifted by Sarah

And just so you all have no doubt in your minds about how amazed and thankful I am for the kindness and love shown to me by this fabulous stranger. I have to send a million warm hugs of thanks your way Sarah for not only the great gift but your blog as well xox

Love B xox

Opps, I almost forgot, I was going to mention my hat addiction. Well I think I have discovered where it all began...

These were taken by my grandfather. I think I'm about 3 years old. I seemed to have enjoyed modeling his many hats, though that last one is obviously not to my taste :) 

In loving memory

Mimi

Joy Fordyce  (My Grandmother - My Mimi)

Buttery blue bonnet marmalade toast soldiers,

served on a worn pull-out kitchen chopping board.

I sit perched on the kitchen stool

munching

as you busy about in your place of creation.

Just one more chocolate and caramel slice

or maybe some of your melt in the mouth shortbread,

a ginger gem.

Washed down … tea with milk, ‘NO SUGAR'.

Handkerchiefs and toilet water;

soap;

powder and dried flowers.

Doll cake - a doll with no lower legs;

birthday cakes;

wedding cakes;

pavlova;

boozy trifle and minted peas. 

You bend to wipe porridge off the chin of your mother, 

scooping up the plate and replacing it with a glass of port (or was it sherry?),

efficient,

caring. 

Short lived –

Sundays, going to church,

standing on the pew at your side and singing gibberish to the hymn book,

to young to read.

Then to the sunday school that I did not like.

I don't think I ever told you why? ...

       the big girls wouldn't tell me who Jesus was.

Did I dash all your hopes when I refused to go?

Me,

dressed in the family Kangaroo costume.

Spinning in a school folk dancing show.

Other children either jumping or being taken out by my tail. 

Crocheted ‘granny blankets’ of many colours.

Beach days;

the ferry passing by;

the smell of fresh fish in your back yard;

coming by to take Cowboy for a ride.

A hooded dressing gown of white with tiny flowers.

(So prized I still have it)

Cross stitch and collected spoons.

Me,

dressed as a poodle,

winning the school gala fancy dress competition.

Your joy at my win and then

disappointment at my choosing of my prize (Sammy Snake) against your advice.

The click of your needles.

The softness of my green woolen vest.

How 80's cool I looked in my crimson angle wing jumper and

the "to die for" jersey with the bright house pattern that matched my coloured tights. 

Your voice "Hello Dear".

Mine "Hello Mims"

The smell of oil paints on landscapes;

Huka Falls.

That day - you know the one.

Your loyalty to family.

Pansies and Hydrangeas;

Blues and purples.

Stories

of: cleaning a step;

church scandals;

family life.

Forever,

sweet soft Mohair will conjure your smile

and Blue Bonnet Marmalade will always be posh.

 Mimi pushing me in my very flash pram while Debbie (Mum) looks on 

Mimi, Rebecca And Debbie (Mum)

Story Time: Mimi reads to me

Mimi and Rebecca

Not Mimi's back yard but you get the idea of our fishing trips!

Rebecca And Robert (Dad)

'Helping' Mimi with the washing

Mimi and Rebecca

Doll Cake made by Mimi for my 2nd Birthday at her house

Dolly and Rebecca

Love B xox