Complex Regional Pain Syndrome (CRPS)

I haven’t talked much on this blog about pain.  In fact, for a long time, I preferred to ignore the topic.

Where does it hurt_(1)

Many of my friends in the invisible illness community have concurrent diagnoses of Complex Regional Pain Syndrome, and within my own family, my sister has been dealing with chronic pain for most of her adult life. It is a debilitating and exhausting challenge for the body and mind.

I previously had neuropathic pain with my Dysautonomia. Peripheral and abdominal mostly. And then I sustained nerve damage during a gynae surgery three years ago. However, the distractions of my primary diagnosis meant that it wasn’t immediately clear the surgery was the cause of my pain. I’d had a steroid injection to the site after the surgery, then gradually over time, my pelvic pain returned and increased. It affected my gait and had a dramatic impact on my mobility. Walking with a cane possibly exacerbated it, but without it I would have been unable to walk further than ten metres. It hurt so much. The pain extended from the left inner pelvis, down the middle of my left leg into my ankle. I found osteopathy helpful. I took pain medications (gabapentin and oxynorm) and modified my life. I thought that it was just another curve ball thrown at me by my dysfunctional body. I didn’t connect it with the gynae surgery. Or at least, not until after the six months of methylprednisolone infusions; when my pain disappeared completely.  That’s when the lightbulb went on for me.

When an awful symptom is removed and you experience life, pain-free, it makes you acutely aware of how much it was affecting your life.  I realised both how bad that pain had been and how long it had been bringing me low. As I weaned off the steroids, the pain returned.  I had another, more minor, gynae surgery.  This time, the pain post surgery was excruciating. I was certain that some medical misadventure had occurred. The specialist in the hospital explained that they couldn’t find cause for the level of pain I was in. I agreed that a referral to the pain team might be useful.  I was in remission and just had this pelvic issue to sort out.  Eager to get beyond it, I was keen to try anything.

The Gynaecology Pain Team have been so wonderful. I see an anaesthetist, a pelvic phsyiotherapist and a psychologist.  They believe that pain is exacerbated by a number of factors, and first introduced me to the concept of complex regional pain syndrome. This is what my psych wrote in her last clinic letter:

“We concluded that following 32 years of neuropathic pain from [auto-immune neurological disorder -Pandysautonomia] and three years of neuropathic pelvic pain she will, in all probability, have central nervous system sensitisation”.

That just means that my nerve pathways over time have amplified my pain signals. My body is in pain, and the pain I feel is more extreme than might be felt in the same scenario by someone who hasn’t been experiencing chronic pain for a long time. The longer you have pain, the worse it feels.  But don’t worry, things are in hand here; I am managing fine with all of the measures we have put in place. I have another surgery scheduled for August, when hopefully we will have a clear direction for treating the nerve pain. I am hopeful we can reduce it significantly.

I thought there might be others who can relate to this part of my story. If you want to read more about CRPS, look here.  If you are in New Zealand and have been diagnosed with Complex Regional Pain Syndrome too, you could join this facebook page. And for a quick overview of invisible illness (yes, CRPS falls into this category) have a look at this  clever infographic by Victoria from www.burningnights.orgThank you so much for sending me your infographic, Victoria.

 

Source: http://www.burningnightscrps.org
Source: http://www.burningnightscrps.org

 

 

Sunshine

The winter sun seeps thin and white through the cloud cover.  The rains have been sporadic, like the tears of grief when not one year, but two have passed. When the irrefutable fact of her passing has seeped into your bones, and you know, there is no going back.  The rain connects across the Tasman in great arcing fronts. Every year on this date, stretching between countries, across time, back to Kellie’s death, and to her friends and family. Reminding me that time is passing, but the grief doesn’t.  It just changes, like the weather. Shifting the pressure and moving the isobars.  Hail today, rain tomorrow. Some snow among the chilly grey.

rememberingthis beautiful ray of sunshine

I think of beautiful Kellie.  Of how short her life was yet how much of a life force she was.  I imagine her directing the weather like a Greek Goddess, goblet in hand, laughing at the storms.  Revelling in the thunder and sending out lightning from her fingertips; her anger and joy all rolled into one vibrant and terrifyingly beautiful heavenly creature.  Making her presence felt in the skies.

I think of her family with my own mother heart. It’s so unfair that they have to do life without her. I hope they are okay, two years into their marathon. I hope they are finding their own ways to keep her close, to remember and celebrate her astonishing vibrancy. I stand with her friends and family, across the ether, raising a glass in acknowledgement.  That Goddess woman. Gone but never forgotten.

She was sunshine. Straight up, sunshine.

Here’s to you Kellie. X

(I like this version)

 

 

Synergy

Euphoric!

I love a good coincidence. I love the synergies between things and finding unexpected connections.

You who know me and know my story will understand the particular significance of the word ‘euphoria’ for me. Euphoria was my most significant side effect from the immune modulating steroids that put me into remission. I wrote about that here.  Ah, such a buzz that was, and so nice to have a positive side effect from medications! It’s rare, you know, for the meds to produce something lovely!  I like the synergy, that the med that made me happy also made me well.

So, euphoria and I were an established pair.  And that bubbly happiness spread out across the joy of my remission, across the beginnings of becoming a plus size model. And then one day, I found myself in the uber cool flat of a brilliant photographer, Carolyn Haslett, who was going to do a shoot for me. She was so lovely. I felt really embarassed by my lack of knowledge about the high end plus size fashion scene. I mean, I’ve never really had budget for high end fashion, so my knowledge extended to bagging bargains and making style out of what you’ve got. And of course, when I was sick, there was very little call for fancy things.  It was all comfort and practicality, perched up in my bed looking out at the world.

Carolyn is vastly experienced in the world of fashion, here and overseas. She was a patient educator. She chatted about Georgia Pratt, a plus size model she had photographed previously. Georgia is a forerunner for plus size modelling in New Zealand and is now wildly successful in the UK. Carolyn also told me about Euphoria Design. She told me how much I would love their pieces. We went upstairs to her rooftop and she took some photos. I love all the pictures she took, but the one above feels particularly breezy and confident, it’s one of my favourites from that day.  I was wearing my beloved dress from TCD (another oustanding NZ fashion label for plus girls) and enjoying the whole experience.  It was a day for stepping into confidence and learning to move my body for the camera. I learned so much, not just from shooting with Carolyn, but from analysing the photos with her later.

I looked up Euphoria Design when I got home, and joined their facebook page. I am always keen to support local fashion houses, and I wanted to know more about them. Their clothes made me swoon. Luxurious, flowing layers and unique signature prints, I loved them all. I was thrilled when they announced an end of season sale, such a great opportunity to pick up designer delights at a fraction of the new season prices. And then, one day, Euphoria announced they were running a competition. They were looking for ten ladies who exhibited the ideal that ‘Confidence is Beautiful’.

I was beyond excited! I rifled through my photos and found the one Carolyn had taken all those months before, up on her roof. James Taylor‘s song started floating through my mind… I uploaded my pic and wrote about that experience, strutting across the rooftop terrace, totally new to modelling, a novice at confident posing. I wrote about how confidence is a choice you make, to back yourself. And then, even though I will never be comfortable asking for votes, I shared and shared and hoped and hoped.

Last night, I got an email saying I was in!  What a win for women like me, over forty, a little frumpy, a little frazzly, a little frightened about being thought ridiculous. We’re not ridiculous. We are beautiful, for all that we are, all that we do, all that we have experienced.

It made me dance up and down my hallway. I love this competition because it is all about the very thing I believe. We shine when we stand up with confidence and believe in ourselves. We are beautiful when we know ourselves and treat ourselves with kindness; we radiate positivity when we accept ourselves for all that we are and have been through. Beauty and confidence go hand in hand. It’s a feeling. It’s quite a lot like euphoria!

I sat down this morning to write this post because I knew you’d want to know how that competition went.  And as usual, I went to my online graphic program, Canva, to make the blog graphic for the beginning of the post.  I kid you not, look at the font name!

See! Synergy!

Screen Shot 2016-07-08 at 9.58.32 am

If you’d like to look at Euphoria Design’s beautiful clothes, you’ll find them online here.
Or join their facebook page here and follow the competition as it all unfolds.

So thank you: Carolyn, for the image that helped me place among the winners, to anyone who voted, to Monique at Euphoria & Jane at Identify Marketing for choosing me…

…and thank you ‘synergy’, for making it all feel like a kind of cosmic kismet. I like that.

Your Age

 

 

large photo by Beverly Couper
#letyouragebecomeyou

I’ve been doing some writing for another publication. I can’t publish it here because it’s exclusive to them, but if they choose not to use it, I’ll be popping it up for you to see. I enjoyed writing it so much!

It’s all about curves and confidence, and the circuitous path it took my soul to find a way for both to exist simultaneously in my world. When I was younger, I had no idea that curves would eventually be such a useful part of my self-esteem. I had no idea that the things I hated about my body would become things that I celebrate. How did that happen? How did I get from self-loathing to self-loving?

I had a massive reality check in the experience of living with Pandysautonomia.  A gift of sorts, in the way that all the most memorable life learning can be simultaneously painful, difficult and uplifting.

It made me realise that there are body issues which transcend the petty concerns of comparison. It made me feel the sting of all the time I had wasted on self-criticism, there in front of the mirror, thinking about all the ways people would disapprove of my dimensions. So ridiculous. Mum used to tell me when I was a teenager, that most of the time, other people wouldn’t even be thinking of what my body looked like. That it was a kind of vanity to assume they were. I was convinced there must be others like me. That they were studying every other like-aged-girl to see what was ‘normal’, hoping that they could become it by studying it in all its minutae.  Hoping to find the magic code for ‘cool’ so we could programme ourselves to be so.

I couldn’t be. I was far too tall and generous of beam to ever fit the narrow-hipped, slim legged archetype of the eighties fashion teen; those oversized tops and legwarmers only looked good on petite little things. I didn’t yet understand that being a six foot tall woman required a certain level of bravado. That you need to own your height, your wiggle.  That the most uncool thing of all isn’t wearing a home-made dress, but being a mouseling in a giantess’ body. I had no idea that confidence and ease are the symptom of a simple choice you make. To accept your unique self, no matter how different you are to the established norm. Being free within your own expression of DNA to be your own kind of beautiful.  I wish I’d known that back then.

I could have done a lot with my gorgeous young self that was left undone, all because I didn’t understand. No amount of wishing, dieting, exercising, hoping, slouching, yearning or moping was ever going to change the facts.

I am a giantess.

Fast forward to my middle age… I’m so proud of being built this way. My size has become a bankable commodity since I started plus-size modelling last year. My confidence comes from finally getting it. I’m this person. Who you see is me. All of me. I wear my love of cake in my curves. I wear my love for people in my smile and the wrinkles around my eyes. And I wear my heart on my sleeve, because that is just who I am. No filter. No problem.

Some people love these things about me, and others don’t… and that’s no problem too. I can’t change a thing about it.  I’m happy, at last, in my own skin. Happy to be who I am, in a body that functions. Happy to be surrounded by people I love and to know that above all things, that’s the most beautiful thing of all. He tangata. Happy to be the age I am. To know the things I know. To leave behind me the pointless self-flaggelation of living to the standards of others. It’s a kinder, freer way to live. It makes space within my noisy head for more useful thoughts… the sort that create and feed and nurture me. Building me up to do the same for others.

I’m starting a hashtag across my social media, because I think we don’t celebrate nearly enough, all the ways that age can be ‘becoming’ to women. I’m all about the notion that beauty is relative to your soul, and sometimes, that takes a long time to understand. How are you letting age become you? What are you noticing about yourself that you finally GET, that you didn’t appreciate about yourself when you were younger?

#letyouragebecomeyou