The Smear Campaign

smearcampaignWhen I embarked on my six month steroid treatment, I was told by numerous people in the medical profession that I couldn’t safely stay on them any longer than that.  As it became clear that the infusions were making a massive difference in my quality of life, I began to wonder why we couldn’t just stay with them.
They’re working!  So why not?”   I asked.  I would be a given serious look and a statement like “No, no, not a good idea long term”.  I was told that they effect bone density, among other things, and of course, you don’t want to have the bones of an eighty year old when you are forty, not if you can avoid it!  In addition, steroids are an immuno-suppressant, which is why they are working for me. One of the things my immune system does is erroneously attack my autonomic nerves.  It’s why I am sick. So suppressing my immunity reduces that misguided malfunction, making me feel better.  It’s just another convoluted body conundrum, my immune system is making me sick… but I still need it.

See, suppressing the immune system isn’t selective. The medication can’t specifically target the part of my immune system that isn’t working properly, it suppresses all of it. And that means that all the work my immune system usually does, battling infections and reducing the impact of other threats to the body, is compromised. I noticed it first in the little things. Small cuts and abrasions that took longer to heal and got infected easily. Eye infections, UTIs, coughs, colds and sore throats that took ages to clear. And then, a phone call from my GP.  Remember I had a smear recently? She said that the results, in combination with my steroid treatment, meant I needed a colposcopy.  So she referred me to the hospital.  I called them after I got my letter, asking if they had a date. The receptionist said that my appointment hadn’t been triaged yet, but based on the wait list I’d be seen next month. Then last week I had a phone call asking if I could come in the next morning.

A colposcopy is the next step after an iffy smear test.  It is a scope used to examine the surface of the cervix to better see the changes noted in the cells at the transformation zone, where the squamous and glandular cells meet.  The doctor uses a combination of acetic acid and iodine to observe changes that are indicative of a problem.  This screening service is so crucial, because it is an early intervention.

anatomical diagram of the colposcopy procedure
Source: www.pixgood.com

I had high grade changes in my smear results (possibly why my GP said, this). The colposcopy doctor found visual evidence of a bloom of pre-cancerous cells and biopsied the tissue for confirmation. She explained that around 80% of women contract a virus called the HPV (Human Papilloma Virus) back when they become sexually active (those stats are the reason behind the vaccination they’re giving all those teenagers).  Normally, the immune system is very efficient at handling the longer term cervical cancer risk posed by this virus. But when your immunity is suppressed, well, it’s much easier for nasty cells to proliferate.

Thankfully, there is an easy fix.

Usually it is a day-stay surgery with a local anaesthetic, a diathermy knife and a deft doctor.  It’s called the LLETZ Procedure (Large Loop Excision of the Transformational Zone) .  My doctor explained that, for me, it will have to be under a general anaesthetic.  That’s because although the previous gynaecological surgery I had was successful (the top and bottom walls of my vagina have held) the side walls have now prolapsed. It’s a bit more of a challenge for the surgeon so they’ll need me to be ‘out’.

So I guess, for me, the presence of those nasty cells was a loud and clear example of exactly why I can’t stay on those steroids.  I get it! And I am so glad that we have a screening service that finds these things before they pose a serious risk to the patient. Only 1:100 patients who present like I have will go on to develop cancer needing further treatment, so I feel safe and in good hands.
And lucky!

In New Zealand our cervical screening programme is free.  All women should be having pap smears at regular intervals.

I know there are a lot of reasons not to do it.  Having pap smears is not nice.  It can hurt and for some women it can be painfully embarrassing. For others it is a difficult reminder of bad past experiences in that region and can trigger traumatic responses.

Please find a way, somehow,  to have your regular smear.
It’s five minutes of unpleasantness that might save your life.

Have you had yours?

Something for the battlers…

picture of Bic Runga with lyrics overlaid. "And when you rise, you'll find me here.  Open your eyes and see myself, reflected there.  And for a while a little room becomes an everywhere"

 

Good morning.

I’ve been scrolling through the ‘Meet my Peeps’ guest series.  It makes my heart swell and my eyes spill.  So many gorgeous people, so many brave souls, taking it one day at a time while the world keeps spinning around, unaware. As I was scrolling, this song came on the radio.  And because I suspect nothing is really coincidental, I’m sharing it with you. Whether you are battling ill health or other big life stuff, it’s a really tough gig and you are not alone.

“I want all the world to see, it’s too much sometimes, for me”

I hear you.

Karen: Lost in the Fog

Welcome back to the Meet my Peeps Guest Series.

I am so delighted to bring you this post from Karen. IT Professional,  fellow horse lover and chronic illness sufferer, Karen has a hard row to hoe.  She is dealing with all the challenges Dysautonomia throws her way, largely, on her own.  She does however have the wonderful company of her beautiful animal companions. Three very special horses, Meko, Oscar and Bazil, and two personable pups, Kitty and Milly.

Karen is a deeply practical person with a passion for animals and the outdoors.  She lives in beautiful Tasmania. Whenever she can she spends time making the most of her stunning surroundings and the company of her faithful companions; cooking for friends when able and enjoying being part of a close knit community.

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A picture of horses in the dim foggy light of early morning.

I’ve reached the point in my journey of chronic illness where suddenly all of the denial is falling away. As night ends the dawn appears and the reality of my situation arrives quietly, like an early morning winter fog. It’s a cold…desolate…an eerie place to be.

My Specialist, who has gone over and above in his efforts to help, has said there isn’t much more to try. And I have tried to keep those thoughts of reality away, hoping my current trial treatments will be enough to help me to climb out of this latest setback. And always, the hope that perhaps, there will be a magic pill that will suddenly get me back on track to better health.

Lost amongst that fog, I cannot see where my journey will take me and what the future holds for me. Feeling cold and somewhat numb, I realise I need to pull myself together, to prepare myself for when that fog eventually clears. The key words here are ‘Me’ and ‘I’. Not ‘The Specialist’ not ‘The Medication’ not ‘My Friends’. I cannot find them through this fog. So I look down at what I can see….my hands, my arms, my legs, my feet and I realise that they are all I have to help.

All the things that I either can no longer do, or which cause great expense or payback, come to mind. I think of my dreams of being healthy and active again, living life to the fullest. I think of watching it all pass by me, the whole impossibility of the situation, and a few random tears begin to fall. I’m so glad that shrouded by this fog, nobody can see me like this.

And as the fog begins to dissolve, I see clearly what matters to me the most. My beautiful animal companions who worry over me, who are there for me, the ones that offer me a hug when there are some tears or when I just need one. I can give them a better life if my health improves. Walks along the beach, rides along those bush trails, drives to mysterious destinations yet to be discovered. New experiences. This is what I have to work towards and hope for when the sun re-appears.

I muse a little more. I make some plans. I make a decision in the depths of that fog. This is my tipping point. This is where I need to take control of my own health and not expect others to fix it. It’s a wake up call. I promise myself that I will do what I can to climb out of this valley I’m in. I think about how the introspection within the fog has allowed me to centre my thoughts on me. To block the distractions out and decide on a new direction.

As that fog makes way for the bright sunlight and the brilliant day that lies ahead of me. I know I must take advantage of this day to put my plans into action. To reach my goals in life. To climb out of that valley myself.  I know that next time, I will recognise that fog as something beautiful. Knowing that I am in charge of my life and that I got through it before, into the light of a sunny day.

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Meko and I Swimming_In_Swan_Lake
Karen and the magnificent Meko in Swan Lake

 

Picture of a beautiful bay horse face (belongs to Bazil, who belongs to Karen)
The Beautiful Bazil

Jenna Lovell -Instinct & Intuition

Welcome back to the ‘Meet my Peeps’ Guest Series. I met Jenna Lovell through an online Chronic Illness bloggers group set up by Carly Findlay. Jenna lives in Tasmania, a part of Australia very dear to my heart. When I put the invitation for my series of Guest Posts, Jenna jumped in.  I am so glad to bring your her words and wisdom. Through her blog, coaching with clients and speaking at events and conferences, she shares her story of living with a rare genetic illness and how she has changed her health and life. Jenna loves mail, so pop over to her corner of the internet and say hi:
www.mymissingfactor.com
jenna@mymissingfactor.com
https://www.facebook.com/mymissingfactor
https://instagram.com/mymissingfactor

Thanks Jenna for contributing, I really value your input!    -Rach

The biggest thing that has changed for(2)

I was 16 when I was diagnosed with a rare, inherited bleeding disorder called type 1 Von Willebrand Disease. Like those with haemophilia, my body doesn’t produce enough of one of the essential clotting proteins, and I’m susceptible to bruising, nose, throat, gut and colon bleeds, and as a female with this diagnosis, my periods are severe in every sense. While I’d definitely invite you to take a read of my physical symptoms, Rachel has invited me to share with you my other experiences – managing the mental, emotional and spiritual challenges having a genetic illness throws your way.

This story really starts long before my birth, with my mother’s experiences. While she experienced all the same symptoms I do, she was never diagnosed. She had to struggle through monstrously difficult periods, excessive bruising and other symptoms without a diagnosis or a hint of medical support. I’ve found out in recent years that for women of her generation, that was far from a rare experience (though thankfully its pretty rare now here in Australia). Fear and anxiety about engaging with doctors is common among those of us who had to wait until later in our lives for a diagnosis, which makes getting care and support an anxious task, despite its necessity. So after a few years of horrible periods myself, the decision was made to ask doctors about it, but that definitely brought nerves. We knew my mum had never been given the attention she needed, and had no idea if I’d get the right support or not.

Luckily, my GP is fantastic, and referred me to two equally skilled specialists who dispelled any fears or concerns about their approach, and were able to provide me with my diagnosis. Of course being a teen at the time, my struggles didn’t stop there. It took around 2 years to find the right combination of medications to manage my bleeds and for them to settle down to the most under control point I’ve had them, but in that time, I had a lot of time out of school, I missed social events with friends, I had several teachers talk to me about my attitude and commitment to school work, which prior to my diagnosis I had no good reason why it was slipping. I had the worst of my symptoms during the most important two years of high school (years 11 & 12), so I have no doubt my illness during that time impacted my final grades. Its only been in the last few years that I’ve made progress in creating and maintaining new friendships – after struggling with this in high school due to my constant absences and subsequent loss of friends (and even relationships with my relatives). Even after being diagnosed, I struggled for a number of years to explain my diagnosis and symptoms given the primary issue I deal with is my menstrual bleeds. I felt embarrassed to talk about the details, to mention my condition to others, even when it was needed because of the social taboo about talking about our reproductive systems.

It will come as no surprise to you that as a teen and young adult this put a massive pin in any plans to have dates! I often find it ironic that the primary class of drugs used to treat female bleeders is contraceptives – trust me, with periods like mine, you don’t spend time thinking about sex or anything related to it! I was also scared and worried about telling boys and men about my diagnosis and symptoms for a long time – would they understand it, would they think I was gross, would I have to explain far more to a male than a female, thus extending the time I was talking about my periods to a male, probably in public!

I also went through a period of almost 10 years after my diagnosis that can only be described as my cognitive dissonance days. While I don’t skip taking my medication, for roughly a decade, I continued to have period-based symptoms, large unexplained bruises, and an unrelated but constant string of colds, flus, chest infections and even a few rounds of pneumonia. On paper, I may have looked ‘healthy’ – my weight was in normal ranges for my height and age, I was diagnosed by treated for my bleeding disorder, but I was ignoring a lot of signs. Clearly, my immune system was struggling, and I just didn’t feel great – inconsistent energy and frequently tired, struggling with an undiagnosed gluten sensitivity, and I felt lacking in strength, both emotionally and physically. At the root of this was deep seated apathy – I took no care of my body and I didn’t listen to any of the (now glaringly obvious) signs it was sending my way. I didn’t care about my health that much because I didn’t think I needed to.

So what changed for me?
A number of new experiences in the last few years have seen me revolutionise my relationship with my body, health and myself:

  • I’ve become connected with the patient support community for people with bleeding disorders. I have to say this was a turning point in me finally accepting my condition and myself. There’s nothing like other people who go through what you do, they just get it. Some of the people I trust most in the world come from that community, and I can say I wouldn’t be the same without them.
  • A local Hobart-based business, Barrecode, also has a lot to answer for! This low-impact strengthening workout has not just seen my physical self improve its condition, but I now also trust my body to do physical things, and know it can be challenged and not fail on me. The owner, Christie, also introduced me to new eating philosophies that have supported my exercise and general health, but also allowed me to better understand my body and its needs.
  • Meditation. Bet you’ve heard that one before, but by gosh has my personal quiet time made such a difference! In a physical sense, I use it to manage pain, but its also been fundamental in me coming to a new relationship with my condition, with experiencing pain, and developing my intuition which has helped me make better decisions in all parts of my life.
    The biggest thing that has changed for me? I now trust myself – wholly, completely and over anyone else. I trust my body and I can work together to make me healthier every day, and my instinct and intuition will always provide the best outcome.

-Jenna Lovell

Claire Barnier -Creating Beauty out of Chronic Illness

Welcome back to the ‘Meet my Peeps Guest Series’.  Today on the blog, Claire Barnier, Melbourne milliner extraordinaire, ex-medical professional, social support network administrator and vintage babe, is going to share with us her passion for millinery. Sometimes, passions grow from gardens fertilised through hardship.  Claire won’t dwell on her health issues in her piece below. In her writing and her life, she prefers to focus on the things that bring her joy.  Here she is, a girl I have great admiration for.  I give you the ubertalented, Claire Barnier:

_...it has forced me to stay in touch(1)

Hi there, my name is Claire, I’m 30 years old and I have Dysautonomia.  I also have Ehlers Danlos Syndrome, Common Variable Immune Deficiency, Endometriosis and Adenomyosis.  Taken individually my medical conditions are not nice, but could be relatively manageable. All together they are not much fun at all.  They like to impact on each other and no one condition likes to be forgotten about for long.

My health has been pretty crappy for as long as I can remember but I always recovered, eventually, more or less.  Then 11 years ago (exactly 11 years ago this month) I got sick and pretty well stayed sick.  I had my biggest break from it for a year when I finished studying nursing and began my graduate year but the stress placed on my body from shift work and frequent infections pushed me over the edge again.  By the end of that year my body decided it had had enough of being pushed to the limit and crashed big time; I am still waiting to recover.  If I had known then that I had an immune deficiency my choices may have been different.  If just one of my ENT specialists had thought to check my immune function in all my 20+ years of struggling with chronic and recurrent sinusitis I might not be where I am now; sitting on the couch in my pajamas writing on my computer like I have most days for the last 2 months since I came down with this latest sinus infection.  But ‘what if’s will get you nowhere.

Instead, I focus on what I can do. Being out of action so often through the years has forced me to stay in touch with my creative side; to stretch my imagination and find things to keep myself entertained when I haven’t been able to go out as much as I would like.  So I have dabbled in a few different things; some, like sewing and millinery, have stuck while others haven’t quite so much!  Basically I just love to make things.  I love making things so much that I recently decided to start a blog about it!

I took up Millinery two years ago when I tried out a short course at CAE (the Centre for Adult Education) run by Lynette Lim of Love Lotus Millinery.  Before the course was finished I had decided it was my new passion. My new friend Nikki and I signed up for an information session about a year-long Millinery course at a Melbourne fashion school to be taught by Serena Lindeman.   The course gave me the key to enter a world I had previously only glimpsed through the keyhole. Subsequent classes with Serena at her studio have helped me explore this world even further.

True Millinery is an art form and Milliners are artists.  They make wearable magic out of felt, straws, plastics, silks and fabrics and many, many other materials.  When it comes to millinery the only limit is imagination; even gravity can be defied (and frequently is!).  Milliners create jaw-dropping sculptural masterpieces, practical but beautiful everyday pieces, delicate flights of fancy that steal your breath away and everything imaginable in between.  Millinery is an art for those in touch with their imagination (Australian milliner Richard Nylon is a great example of this) and Australia is a fantastic place to be studying it – we have some of the best Milliners in the world and many are willing to share their skills with those who are eager to learn.

Millinery requires patience.  I thought that living with chronic illness had taught me patience but boy was I wrong!  Illness taught me a form of reluctant acceptance; patience is something quite different.  Hand blocking felt with scalding hot steam and stretching it down over the block again and again to get the perfect, even fit or blocking straw with squirts of sprayed water – making sure the grain is even and the shape is smooth, sculpting freehand and seeing an imagined shape come slowly to life in your hands, wiring a brim and then covering that wire, tooling each individual petal of a silk flower with heated irons and then assembling the flower petal by petal and hours of hand stitching – all brings a new meaning to the word ‘patience’.  And then there’s the muscle pain!

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Millinery also requires dedication – particularly when it comes to time and finances.  Once you begin to learn about hats you increasingly appreciate the work that goes into what you see around you and gain a better understanding of worth and quality.  Millinery materials don’t come cheaply; neither do the tools it takes to make a hat or the know-how; it all takes its toll on your wallet.  Hats take time to make, so much time – more time if they are made well and of course the more intricate the hat design the longer it takes to make.  Very quickly you see that charging $500+ for a well-crafted hat doesn’t seem so ridiculous after all.

Millinery also takes its toll on your hands, more so in the beginning, but then your hands get tough, just like your mind gets tough from its lessons of patience.  You learn to work through the pain, frustration and the countless stabs from needles and pins because you know that when you finish you will have made something beautiful that you can look at with pride (or never want to see again and gladly pass on to its new owner).

Learning Millinery has taught me a lot and brought so much joy to my life – and of course new friends!  I have met some lovely, creative and highly talented people through Millinery.  One of the other things I love about Millinery is there is always something new to discover; a new area of expertise, a new technique, a new material, a way of doing things you hadn’t thought of before and there are so many places to learn around Melbourne.  We are truly lucky here.

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You can find Claire’s blog here and her millinery website here.  Go say Hi!

Q and A

Last month, I had to deliver a ten minute talk …about me.  My story.  It was part of the block weekend for the Leadership Programme I am doing.  The programme is about leadership in social change and it is challenging my thinking in lots of ways. I really prefer writing to talking (I know some of you will find that hard to believe!) and speech making isn’t really my cuppa tea.    But I started doodling, as you do. I doodled lots of question marks.  And then I made a real cuppa.

www.rachelfaithcox.com(11)

When I returned to my doodles, I stared at those question marks for a long time.  And it occurred to me that the best way to tell my story, was to do it using the defining questions of my life. There have been so many things I have wondered, but I pared them down to the bare minimum.
So! Here is what I came up with.

My Life, in Fourteen Questions:

I am a kiwi girl, born just after my parents completed bible college in Australia. My parents felt moved to work on the mission field in a third world country. So I was raised in Papua New Guinea, then I went to boarding school in Australia and soon after that, they went to China. These were the locations of my upbringing. In total, I attended 13 schools, four tertiary institutions and eventually moved back to New Zealand when I was 23 years old.

There were lots of things about my childhood that made me think.  And one of the first big questions I remember thinking, was:

"What makes us think our religion is more right than theirs?"

I liked to think about things as a kid.  And I started to notice other odd things about our world.  I noticed that when I was at the international school in PNG, there were more than forty nationalities of kids and everyone played together. Where we were from wasn’t even a factor in the forging of friendships.  But when I went home to New Zealand on furlough, people teased me for coming from a place where the women wore grass skirts and showed their boobs.
I was an outsider in my own country.
I began to think,

"Why do people have to be the same to be accepted?"

In my teens I became deeply philosophical, the way some teens do! The questions came thick and fast:

“What is the origin of thought?” “Are we inherently good… or evil?” “Is all this real, or just a figment of my imagination?” “Is life governed by fate, or are we self determined?” “Why are we here?” (and you kids from the seventies and eighties will relate to this one) 
“Are they gonna drop the bomb, or not?”
But these deep questions were all overwhelmed by a far more pressing issue:

“How do you pash?”

(Note to teenage self:  Mum’s historial romance novels were not the place to search for this information.  “She explored his mouth with her tongue” was a stylistic interpretation, not an instruction).

By this time, I’d been given the nickname Falling Tree because I was fainting a lot.
No… not because of boys (but there was plenty of swooning, too… I’m looking at you Morten Harket)!  I made it through my final year of high school and got into a competitive Journalism degree at a Sydney University.  I was ecstatic!

My well meaning Dad thought journalism would corrupt me, so I wasn’t allowed to do that course.  But a year later, when I reframed my University ambitions to encompass a career path ‘better suited for a woman’ I was allowed to go.  I embarked on a degree in Education and Teacher Librarianship.  Instead of writing words, I planned to surround myself with them.
But I wondered,

"Why does being a girl have anything to do with it?"

It took me seven years to get that degree (it was a bit boring).  Across that decade, I moved countries, got married, and divorced, and valiantly embarked on Project: Find a compatible Handsome Prince. There were quite a lot of frogs to kiss, so I used my knowledge of pashing with great determination.  Surely one of those frogs would be him…?!  And all of a sudden three wonderful things happened in a short space of time.  I found my man, we bought our first house and had Bee and Little Zed. All my dreams were coming true.

Then one day I got the flu, and I never recovered. Can you imagine that?  I was constantly dizzy and fainting a lot. But the faints were actually my heart stopping. I was fitted with a pacemaker to keep me ticking.

I asked a lot of questions during those early days of sickness, but the biggest one was

"How Long will this Last?"

No one knew.   Other parts of me starting going wrong: digestion, bladder and bowel function, temperature regulation, cognitive function, I couldn’t sweat properly, my pupils were not reacting properly to light, I had constant nausea and dizziness every time I moved to stand.  My blood pressure and heart rate were all over the place. I began to experience burning, tingling and numbness in my hands and feet, I struggled through daily chores. I had to quit teaching and we had to take in home stay students to cover my loss of income. The fatigue swamped me. My gait and mobility started to change. Every day was an exercise in pushing through. Pacing. Planning ahead.

I ended up in front of a neurologist who explained that I have a progressive form of autonomic nervous system dysfunction called Pan-dys-autonomia.  That covers all the automatic things your body does.  I know some of you here might relate to that. What made my problem odd was that I had it without a primary diagnosis. Dysautonomia is common in late stage MS and Parkinsons, aspects of autonomic dysfunction affect people with spinal cord injury too.  But the cause of mine was elusive. Six years of watching the progression, endless tests, treating the symptoms and fearing the decline and fall of my future led me to this desperate question:

“Can’t something be done?”

That question was met with averted eyes and shaking heads. Do what you can with your family now, I was told. Before you can’t anymore. I didn’t like that scenario. We embarked on a proactive memory-making schedule. A family holiday, the prioritising of togetherness. And I researched. My research led me to other patients overseas.  I listened to their stories, finally finding people who understood. I began to think deeply about the issues that face people like me.  People with ‘invisible’ illnesses, disability and accessibility issues that aren’t immediately evident. People with rare diseases or poorly understood diagnoses. I wanted to know what could be done for them, too. The injustices of all those lives lived beneath the radar began to burn my brain.
It led to this question:

“What can I do?”

I was offered some work writing for an overseas blog. And I remembered that I like to write.  So I started to write for more people, and even for myself. Blogging led me to ask many more questions, but for the first time I was beginning to see that it was leading me to answers too.  About me, about my purpose, and the beautiful, simple idea, that I could do what I do best.
I could write about it!

One day, I found a Youtube video by a specialist overseas who was treating patients like me, and getting results.  My general physician didn’t want to know. So I pushed and I fought and I learned to use my voice with sometimes, quite intimidating doctors! I kept writing for The Invisible and they began to respond. I wrote for me and began to take action. Until finally, I found a specialist who had read the same papers as me, who had seen the same video. He started me on a new treatment regime in January and it is so far looking really promising.
Fingers crossed!

And here I am, feeling better than I have in six years, embarking on the Be.Leadership Programme, and wondering

“Where will this lead?"

I know first hand that while we are all, to some degree,
defined by what our bodies can do and not do;
more powerfully, we are defined by
what we think,
by how we feel,
and by what we can do about that.

I think we have a responsibility to
help people understand
that our common humanity
is bigger than religion,
it is deeper than culture or race,
it is more practical than philosophy,
it’s broader than gender
and more timeless than life spans,
it’s our world’s biggest learning challenge
and it even transcends our physical abilities.

Those questions of mine have taken forty years to percolate. And I am just beginning to understand that they all point to the same thing.
That we, at the heart of things, have more in common than we don’t.

I am so grateful to have found an authentic way to connect my heart for social change, to society.

“How did I get so lucky, to have my heart awakened
to others and their suffering?”

Pema Chodron

Q and A
Q and A
Questions and Answers

Sarah Phelps: Through a Child’s Eyes

Meet my Peeps Guest Series: I met Sarah some time last year.  When I first met her, I had no idea what a great writer she was.  She was often present in online conversations and I remember wondering how she managed the caregiving role for her unwell husband at the same time as dealing with her own illness. Aside from her illnesses, Sarah is a  talented musician and bright spark.  I didn’t know she was a writer until she responded to my Letter to Dysautonomia post. We began corresponding and she got hooked by the writing bug!  This is the first of Sarah’s guest posts.
How do you see yourself?  Sarah is looking at herself through the eyes of others…

 

Picture of Sarah Phelps with a quote "When people look at me they see a helathy twenty-five hyear old girl riding around on the footpath on a mobility scooter meant for old ppeople.  They don't know the truth.

I broke my ankle in early 2009. I wish I could say it was from something exciting, like a jet skiing accident. But I was just walking around my room, tidying up. I sat on my bed to grab something from the other side; it only took a few seconds. When I stood up, one of my legs was completely numb. I didn’t realise until I had taken a step, placing all my weight on it, and there was a sickening snap, my ankle twisting at an unnatural angle as my leg crumpled.

Because of my EDS* getting around on crutches was very difficult. Trying to move my bodyweight around using just my arms = dislocated shoulders. My broken ankle and torn ligaments also meant I couldn’t drive, so I was stuck at home. A sympathetic couple from my Church stepped in and gave me a second hand mobility scooter. It had belonged to their elderly mother, but she’d just moved into a nursing home, and so no longer needed it. It was all mine. It was a bit embarrassing, but kind of cool to ride him around.

He was red, my favourite colour. I named him Wally.

It was pretty easy for people to see why I was riding Wally. I had a big cast on one leg, and a pair of crutches tucked under one arm. I got lots of grins and thumbs up. “What a clever idea,” people would say. “That’s heaps better than trying to get around on crutches!”

Eventually, my ankle healed. I could drive again. Wally got tucked away in the shed. Everything was back to normal. But slowly, my health continued to deteriorate. Eventually, I had to surrender my license. I wasn’t well enough to drive anymore. We sold my car. And I was stuck at home again.

After a while, Wally came out of the shed. I started using him to drive around the block, taking the dog out for a run to stretch her legs. Later I began driving him to my parents’ place, to visit them. Eventually, I progressed to taking him grocery shopping. I’d park him outside the store (he’s not an indoor model – he’s quite wide), do my shopping, then load him up with groceries and ride home. I got quite good at packing: I could fit a whole trolley-load of groceries on there! I was so proud that I could do the shopping by myself, instead of having to drag my husband down to chauffeur.

But I noticed something different. I didn’t have a big cast on my leg anymore, or a pair of crutches tucked under my arm. People no longer smiled at me. They frowned. Even if I made eye contact with them, gave them a friendly smile and cheerily said “good morning”, they didn’t smile back. They muttered under their breath. They made rude remarks about my weight. They pointed and laughed, and mocked me.

And I felt ashamed. I was no less disabled than when I had a broken ankle. In fact, I was more disabled, as it wasn’t just my ankle that was broken; it was my whole body. But my disability was invisible, is still invisible now. When people look at me, they see a healthy 25-year-old girl riding around on the footpath on a mobility scooter meant for old people. They don’t know the truth.

At first, it would really hurt when people made fun of me, or made rude remarks while I was down the street. But my two younger sisters changed my attitude. They were 9 & 11 years old. They loved to sit on the floor of the scooter and ride around with me, their legs resting on the plastic wheel arches. My youngest sister actually thought that this was what the wheel arches were designed for, so that Grandmothers could drive around with their grandchildren, and the kids would have somewhere to put their legs! Their enthusiasm for my cool scooter helped me to be less self conscious, even when they weren’t with me. When people stared and pointed and made rude remarks, I’d imagine my sisters were with me, with big beaming smiles on their faces as I drove them around.

My sisters grew into young adults – they wouldn’t fit at my feet on the mobility scooter anymore (even if they’d wanted to continue being transported in that way, which I highly doubt!). But when he started kindergarten, my nephew started riding with me instead. Every Monday during the school term I’d pick him up from the bus stop in the afternoon and take him back to my place, on my scooter, for piano lessons. He thought it was the coolest thing. He would sit high and proud on my lap, with his bag at his feet, and do a royal wave to everyone as we went past, like he was some kind of king riding away in his chariot. Awed voices of other school children would follow us as we rode away: “Whoa! Look at him! That’s so cool! How come he gets to ride on that thing? That’s awesome! I wish I got to ride on one of those!” It made me smile, every single time.

Since his brother also started school, the schedule has changed, and it’s been a long time since my nephew has ridden with me (his Mum now drops him off at my place and picks him up again afterwards). Without the frequent reminders of childish excitement about my scooter, I find myself having to work harder not to wither under the stares and snorts of derision as I ride past.

Recently, I passed by the local football field on my way to the store. It was early evening, and there were several football teams that had just finished training, and were also headed back downtown. That meant I had to pass a line of about forty fit, healthy, testosterone-fuelled guys. They were all young adults, about the same age as me. The snickering started down the end of the line and progressed to pointing, hooting and yelling. I wanted to ride my scooter into a hole and disappear. But although my knuckles may have been white from clutching the handlebars so tightly, I sat up straighter, gave them a cheery wave, and then proceeded to tune them out.

Eventually I got past them all, and was left alone to ride through a lovely part of the park. Trees, grass, flowers, birds. I took deep breaths and tried to ignore what had just happened. What I knew would keep happening as long as my disability was invisible. I rode down to the footbridge to cross the river, and found two boys sitting on the edge, fishing. They looked about 10 years old. They looked up as I came onto the bridge, and one of them called out to me.
“Hey miss!”
Inwardly, I cringed. “Yeah?”
“Is that your ride?”
“Yeah, it’s mine”.
“It’s pretty cool!”

For a second, I looked down at my scooter again with my adult eyes. The stuffing is coming out of the seat, and one of the handlebars is chewed up. The scooter is dusty, and rattles and whines noisily when I use it. And worst of all, it’s meant for old people – and I’m not old. But then I looked back up at him. His eyes were wide and sparkling as he beamed at me with an enormous smile. And I couldn’t help but smile back.

“Yeah, it’s okay. Thanks.”

He went back to his fishing, and I kept going, contemplating my scooter through a child’s eyes again, and smiling.

xx Sarah Phelps

How do you deal with it when people treat you differently because they can’t see your invisible illness? Personally, I wish I could just always shrug it off, but I have to confess that it does wear me down over time.

* In addition to Postural Orthostatic Tachycardia Syndrome (POTS), I also have Ehlers-Danlos Syndrome (EDS). One of the most frustrating symptoms of my EDS is hypermobile ligaments. Ligaments are the things that are supposed to hold your joints in place. But mine are super stretchy, and let my joints just kind of go wherever they want. That means frequent dislocations and subluxations (semi- dislocations).

“Who, ARE you?” Emily Perkins Doll’s House

A Theatre Review… Kinda

I have been lucky enough to watch exactly half of the performances of A Doll’s House by Auckland Theatre Company.  It is an adaptation by Emily Perkins of the Ibsen original.  Set in contemporary New Zealand, it is the story of Nora, the cheerful half of an off-grid, sugar free, anti-capitalist couple.  Led by the principled Theo (Nora’s husband), they strive for the picture perfect eco-friendly life with their adorable twins, Billy and Bee.

The play is all about Nora, the ‘doll’ of the play’s title.   Boxed in by her life and the ideals they aspire to, Nora searches for ways to please everyone in her world.  She tries desperately, within her means, to effect damage control as the pressures build. All the while scrambling to maintain the facade she has built to make it all appear okay.

Nora is a complex character and it is easy to feel as the play progresses that there is a lot more to her personal story than is being revealed.  It’s clear that she is fighting her battles on her own personal front too; the presence of a more animalistic force is felt as the scenes change, starkly contrasting, yet each building on the tension, until finally, she cracks.  “Who, even, are you?” her husband asks her as their world begins to unravel.  Nora begins to see in that moment.  She is less, and more, than she ever thought possible.

Emily Perkins, herself a contemporary New Zealand woman and mother, has drawn all the shades of Nora so beautifully.  I confess that I have sat in the audience watching Laurel Devenie’s performance of Nora and felt the tears welling up in response to her struggle. She is a woman of my generation. Someone who strives to find the fine balance between sense of self, work, spousal responsibility and motherhood.  Ultimately, it is beyond her reach.  There is no happy ending for this ‘inspiration board’ couple.  As the play reaches it’s final crescendo, she leaves it all behind. Their ‘sustainable’ lifestyle is ultimately, not.

I’ve seen this play so many times because my seven year old son is one of the young actors who plays Billy, Nora’s son. The fact that Nora is loving my son as her own absolutely adds to the poignancy of the play for me. I feel it personally, that mother struggle. My heart is hers as she grapples with the contrast between the frustrations of motherhood and the beauty of her children’s newness. I feel connected to the performance because her arms are cradling a child I love so much. My heart aches anew every time I watch her leave him.

It is such a privilege to see a play evolve across a season.  Laurel Devenie’s performance is an absolute standout, particularly the last scene. The whole cast approach Emily Perkin’s adaptation with sensitivity and feeling. I have enjoyed watching the play each and every time, a feat that would be hard to match with many theatre productions.

And the kids.  Alongside the talented Madeleine Walker (that girl is going to be famous!), my Zed has been able to basically play himself.  A typical little boy; annoying his sister, making noise, wreaking havoc and being a sweet, skinny, vulnerable child. I am impressed with his commitment to the significant hours this play requires.  His enthusiasm for an audience and the joy on his face as the applause washes over him fills my heart with happiness.  It’s a beautiful thing to see your kid doing the thing that lights them up.

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Thank you Liz Baldwin-Featherstone, for putting Zed forward for the audition back in April.  Thank you Auckland Theatre Company, for putting on a play that has been such a joy to watch, over and over and over again.  Thank you for nurturing my son’s acting interests and caring for his needs so beautifully across the season, you are all outstanding people (especially you, Virginia Frankovich!) …he has loved the experience of playing Billy very much.  What a cool gig, to play around in a pit of pandas!

And thank you Zed, for reminding me every time, why mothering you is worth all the personal doubts and identity crises, worth all the struggles that every woman faces who chooses to be a mother. I promise you that I will never leave you.  Not because women leaving their children is a social taboo, but because I want to stay.

Being your Mum is one of the most useful things I have ever done. You’re stuck with me, babe.

Pacemaker Progress

Yesterday, I had my pacemaker checkup.  Usually, these happen now every six months, but this one was a little shorter in time because they recently interrogated my little device when I had my second Tilt Table Test, right before starting my infusions.

We’ve been looking for some objective data to measure the improvement since the immuno-suppression began in January.  I’ve been feeling so amazing compared to before, and doing more all the time.  There have been crashes when I have pushed too hard, but the trend from my point of view is upwards!  So it was really cool yesterday to find that my heart is needing so much less help from the pacemaker.  In the time since my new treatment, I have only had 62 rate drop episodes, most of them during the night (it’s normal for the heart rate to drop during deep sleep, but my pacemaker still paces me, even then.  These episodes are much more benign than the ones when I am up and about).  62!  Most of which aren’t a worry at all! So happy.  I don’t remember ever having a number across such a long stretch of time that was only two digits.  Real progress!

yep, that's right_

And because ridiculous hopefulness is part of my way of being at present, I enquired whether or not it meant that one day I might be able to have my pacemaker removed. Lisa, the lovely nurse specialist (who was in theatre with me the day it was inserted) said it would be more likely they would just upgrade me when it was time, to the new MRI compatible pacemaker.  She thought having one on board would be sensible, even if my wellness continues because, well, you know, old age.  Maybe she is doubtful this good run will continue. But I am hopeful.

For me, the MRI compatible pacemakers seemed frustratingly pointless, because my understanding was that my leads were not MRI compatible.  When they change out your pacemaker, they don’t swap the leads.  That’s because over the last six years, my leads have been growing into my veins.  Removing them would be too dangerous, there isn’t even a surgeon in NZ who does such a surgery. But Lisa told me yesterday that my leads are MRI friendly!!  So happy about that!  It means that down the track, once this old model is replaced, if I ever need further testing about anything, I’ll be able to have it.

So two pieces of great news!

Did you ever wonder how they interrogate a pacemaker?  The hardest part about it is finding a park and getting to the pacemaker clinic on time. Otherwise, it’s as easy as 1, 2, 3!

STEP ONE_

STEP ONE_(1)

STEP ONE_(2)
And that is it!  Done!
At Auckland City Hospital, there is an awesome barrista on Level 5.  So if there was ever a step four, it might be a quick detour to pick up an excellent coffee!

Do you have a pacemaker, too?  They’re such clever little devices aren’t they?  Are your pacemaker check-ups like this one?  Or maybe you are going to get a pacemaker… got any questions?  Or maybe you are just curious… my pacemaker lump has always invited curiosity and tentative ‘feels’ from people I know.  I’m all about the information, so if you have any questions at all, I’m your girl.

 

Carly Findlay: A Human Being, First.

Picture of Carly Findlay and quote about the importance of doctor care that encompasses the physical and social needs of their patients

Carly Findlay is a force! I first encountered her online a few years ago and I’ve been a fan ever since. Then last year when I was doing my blog course, Carly was the invited expert for a student online chat. It was a big fangirl moment for me! I am always blown away by her generosity, insights and can-do attitude. The following words are from Carly’s bio:

“Carly Findlay is a blogger, writer, speaker and appearance activist. She challenges people’s thinking about what it’s like to have a visibly different appearance.

She’s written for many publications including The Guardian, Daily Life, The ABC, Mamamia, Frankie magazine and BlogHer. She’s uses her blog to write about her skin condition, Ichthyosis, as well as promoted causes such as Love Your Sister and Donate Life.

Most recently, Carly was named as one of Australia’s most influential women in the Australian Financial Review and Westpac 100 Women of Influence Awards for 2014. Carly received the 2010 and 2013 Yooralla Media Awards for Best Online Commentary for her body of disability focused writing. She also won the best personal blog category for Kidspot Voices of 2013, and the 2013 BUPA Health Activist award for Positive Life Change. She’s also been a finalist in the Best Australian Blogs competition in 2011, 2012 and 2014″.

May is Ichthyosis Awareness Month and Carly has been working tirelessly to organise the first meet up of Ichthyosis Patients in Australia.  You can read more about that in her Ichthyosis Awareness Month stories.

And here she is, talking about how educating doctors promotes compassionate practise.  This post first appeared on Carly’s blog, here:

Meet My PeepsOver the Christmas holidays, I introduced myself as an adult to the dermatologist who gave me a pretty dismal prognosis as a baby. He pretended not to remember me until he told me I always had blocked ears.

I think he was surprised to see me. I told him some of my achievements including how I am now educating dermatologists about my condition (something he needed when he treated me).

I grew up in a small town with one dermatologist. He had very poor bedside manner and made some terrible assumptions of the way my parents looked after me. Needless to say, I was transferred to a paediatrician very quickly!

And like many parents of children with disabilities, mine were told to prepare for the worst. I was diagnosed correctly with Ichthyosis at birth. At first they were told I would be ‘better’ in a few weeks. And then when it was apparent my condition was worsening, they were told that they were not looking after me. At seven months, I was bundled into my parents’ arms – they were told to take me home to prepare for my death. There didn’t seem to be much talk of what I could achieve with the right medical treatments and support.

And so I lived past seven months, reaching milestones in my own time. Then I surpassed seventeen months, seven years, seventeen and twenty seven. I am still here today.

That doctor did not see potential. He saw a diagnosis, a prognosis, possibly an outcast and a life to grieve over. I proved him wrong.Other people with Ichthyosis tell me that doctors didn’t give them a chance either. My friends have said that their parents were told they wouldn’t make it into mainstream school, that they wouldn’t have relationships or children, and that they would be social outcasts. These friends are university educated, in relationships and some have children. And a friend who’s a parent was told that they should be preparing for the worst after their child was born with Ichthyosis – even advised to start preparing for a funeral service. Her little girl is now six.
At Stella Young’s memorial, her close friend Bryce spoke about how the doctors told her parents to start grieving for the child that she wasn’t when she was born. They never grieved, they had not lost anything. Like my parents, they gave her the best possible life, instilling pride through being proud, never doubting her abilities. Bryce said Stella’s parents “didn’t see disaster when people around them could see little else”, and “She was the eldest daughter and sister of a family that would get on with the job of living.” They gave her the resources to succeed, a name that means star, and she outshone those doctors’ expectations

The political models of disability can determine a person’s compassion and empathy towards disability. And so a doctor’s low expectations for a baby born with a disability can set the scene for their attitude through the lifespan of that patient. Perhaps because of the medical model of disability, (where disability is viewed as a problem that belongs to the person with a disability), doctors only see a diagnosis, and not a person. They may not believe a patient with a disability is capable of being educated or empowered about their own healthcare. Yet if doctors studied the social model of disability (that the physical and attitudinal barriers are a a cause of society and can be removed), they’d have greater training and compassion for patients with disabilities.

As I’ve mentioned previously, the Washington Post featured a great piece about the low expectations of doctors on patients with disabilities.

Leana S Wren writes:

“While medical school curricula are replete with lectures on “one-in-a-million” diseases, little attention is devoted to teaching future doctors how to care for people with speech disorders or other disabilities.”

NPR raises the same issue:

“More than half of medical school deans report that their students aren’t competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don’t require clinicians to demonstrate knowledge or skills in treating patients with disabilities.

Numerous studies have found people with disabilities receive inferior health care, including less information about prevention and fewer screening tests.

Mistaken assumptions are a big reason. Doctors and nurses have expressed surprise to me when I explained that they have to discuss risks and benefits with patients who are cognitively impaired. Some doctors are also surprised to learn that they need to ask someone who has a physical disability about sexual activity.”

And the New York Times cites how little training doctors had in managing patients with disabilities. Pauline W Chen MD writes of doctors being unaware of how to manoeuvre patients in and out of wheelchairs safely and with dignity, lack of physical access to medical buildings, and the lack of disability training doctors receive. In some cases, doctors didn’t complete the medical exam on the patient because they didn’t have the correct supportive equipment nor a care plan to safely assist them.

It’s this extra care – the physical care and the social care – that is needed to empower patients. Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.

 (On a side note, sometimes I go to hospital with a non-skin related ailment. A sore throat, for example. And the doctor is so focused on my skin, sometimes marvelling at the medical miracle sitting before them, that I feel like I am a rare patient coming to life from their textbooks. Really, I just want a doctor’s certificate and a script for antibiotics.)
I went to hospital earlier this year. I was so sore, and a bit miserable. I saw a junior doctor, one I had not seen before. I spent an hour in the consult room, talking to her about Ichthyosis, but also my job, blogging, wedding plans, travel and the Australian Ichthyosis meet. She said I was the first patient she’d met with Ichthyosis and she wanted to learn more than what she’d seen in the textbook. Her supervisor came in to provide further input into my treatment. Again, we talked about life, not just Ichthyosis.And she told this junior doctor how lucky they are to have me as their educator. What a compliment.I am so lucky to feel empowered as a patient at my hospital. These doctors listen to me. They treat me as a person not a diagnosis. They see my potential and are proud of my achievements. Their compassion means I am a human being first.

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Human being first, human being, first.  Human Being, First.