Thursday, 27 November 2014

Low High

Earlier this year I was super excited to head to my first concert in years. I haven't seen a live music act since becoming ill in 2006. I had tickets to see Scissors Sisters way back in 2007, but had to give them up as I was spending more time bent over my toilet or communing with the floorboards than upright. Then this year, which has been my year of worsening health and also the odd, "Screw it!" moment, I decided I was going to a concert.

I wrote about my excitement. Ella Hooper had put out a song The Red Shoes and it seemed kismet had finally gotten off it's arse and said "Here you go Michelle. After a year of shite and nearly a decade of crap you get to have some fun." In all fairness to kismet I may have misheard or misinterpreted it's words. My cognitive function can be a little poor on occasion thanks to that whole poor blood flow thing.

But here was a song about red shoes, put out by an artist I've followed for years, my shoes ended up in her fan video for the song, Mr Grumpy bought tickets, the venue was happy to help me negotiate the stairs, Ella even chatted on Facebook, and the single launch fell exactly on the one year anniversary of getting my pacemaker, Jeri, put in. All I needed was a choir of angels and nymphs throwing rose petals before me to fill in the moment to perfection.

(Artsy photo of The Red Shoes ticket in my red shoes.)

Then I stupidly declared to the world I was telling my body, "Screw you, body. I'm going to a concert. You can't stop me!" And like the petulant child it is, it raised my "screw you" with a "screw you and the horse you rode in on."

A few days before we were supposed to be heading to Melbourne my symptoms started to flare. I put on my blinkers and started some very peppy self-talk.  But things got worse, and worse. So on the day where I was supposed to be in Melbourne seeing Ella Hopper and bopping along to The Red Shoes, I was stuck in Emergency.

(Screw you body, I'm still wearing my red shoes! Even if they are squishy slippers)

I think I held it together for about the first hour, but I am not ashamed to admit there may have been tears. And for about a week after I rocked some fine ennui. Good ole Mr Grumpy did offer to still drive me to Melbourne to catch the last hour or so if I wanted, but a three hour car trip after an afternoon and early evening spent in Emergency was not exactly the best move. So I chose a pity party for one instead.

Cue a few months later and Mr Grumpy spots that Ella Hooper's album launch for In Tongues is happening in Melbourne on the 6th of December. Unbeknownst to me Mr Grumpy contacted the venue to see if they are wheelchair friendly. Sadly no, but they are very happy to accomodate me and hoik me up the stairs so I can go. After some discussion about me not wanting to get my hopes up and not wanting to waste cash again, Mr Grumpy had his own "Screw it!" moment and I am now the proud owner of two tickets to the Melbourne album launch!

(My nanna self is usually putting on her pjs and getting ready for bed at 9pm.)

So next week I am making my way to the city again. Praying to every known deity that my body will hold it together so that finally I can see Ella  Hooper sing The Red Shoes while I dance badly in my chair and sing along. No idea how long I'll last being late at night and the Summer heat, but Screw It! I'm going to give it a go.

I'm going to carpe the crap out of that diem!

Michelle

Low High seemed the perfect pick off the new album. Amidst all the highs and lows of late I'm focusing on loving and living this life I have.

 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $4,300, keep donating and hopefully we can reach $10,000 (ends Dec 9th 2014).

Monday, 24 November 2014

One of those days.

(Giorgos Rorris, source)

Today was one of those days.

In truth it began yesterday when I walked from the bedroom to the lounge to speak to Mr Grumpy. Only to disappear behind the couch as the world went black and my legs buckled as if their bones had suddenly been vapourised. Unphased by my disappearing act, Mr Grumpy remain seated on the couch.

Do you need a hand?

Give me a minute.

Okay.

He remained reading a book on his tablet, waiting for me to compose myself. More concerned that I was about to smash my favourite coffee mug than any stress over my state. My 40th birthday present to myself. He knew I'd be more upset about breaking that than any limb. I appreciate that more than words. No fuss. It's a gift. He knows me so well.

I struggled back to a seated position. My legs trembling and world spinning. A few words to let him know that I was ready to be picked up and poured back into bed.

A foray back to home and family to eat some tea. Before being carried, slurring, back to bed after collapsing sideways from a seated position on the couch. Exhaustion, pain meds and a hot pack all that was needed to fall into a rare deep sleep.

This morning I pushed. I showered. I dressed. I was determined. I had a plucky can do attitude. And then I sat looking at my computer, vague. Words there just out of reach. A jumble of ideas and sentences that I'd just start to understand before they vanished leaving no trace behind.

I drank. I ate. I had more coffee. I sat outside in the cool air and the rain. I sat and I stared.

It's a hard place to inhabit. The Vague Lands. Empty. It feels like a part of me has been stripped away. Losing my mind. Losing me. My face numb. My hands numb. It feels like I am moving in slow motion. Through treacle. The tremor and pain in my hands worsens. Cramps in my feet curl up some toes and splay others. I can feel the failure looming closer. Quicker. My head heavier. A small flicker of alarm registers in my mind, but is heard through the thickness of decreasing consciousness.

I sit watching a small snail glide down the brick wall of the house. The cool moisture in the air a call to all that it's time to move. To explore. To find its way to another of my pot plants. I envy that snail. Gliding effortlessly. Leaving a glittering trail behind. While I struggle to sit and breathe.

I call for assistance. My youngest to carry my laptop. My limbs too weak and unreliable. I daren't carry anything of value. I lift my feet and stumble through the house. Lead and mud. The dregs of my mind urging me on. Telling me it's not far.

Lady Day continues to play on my lap top. God Bless the Child. I feel more than hear. I have her languid voice on loop.

To fall on the bed in my darkened bedroom. I can hear the rain once more. Heavier now. But more distant. The fine line between passing out and sleep is reached. My youngest grabs me another drink but I am too tired to register it's presence. My response to the question of need merely reflex. Drink? Yes. Heat bag? Yes. Door closed? I'm not sure I answered the last. The darkness overtook me quick or slow I'm not sure. Time was liquid. Indeterminant. Gone.

I awake a few hours later. Sore. I lay where I fell. Curled in a ball on my side. Too exhausted to move. Protesting limbs refuse to move. I breathe through the pain and uncurl. The call of my bladder to strong to deny. And back to bed once more.

My necklace is gone. Did I remove it or someone else? Time and action are lost again.

Everything is short and sharp. Piecemeal. A paucity of words and thoughts. Parts of me misplaced. Words and phrases fall from my mind. Disparate pieces thrown across my mind and the screen before me. I type. Fractured. Exhausted.

It's been one of those days.

Michelle

Monday, 17 November 2014

Boadicea in comfy pjs and slippers.

I wrote this a while ago but it still holds true for me. 
Whilst in recovery mode I thought I'd put it on a photo of my pasty feet and one of my pairs sparkly Dorothy slippers. 

My mantra for living with Chronic Illness.



It's coming up to the end of my year long fundraising for Dysautonomia research. Three weeks to go (Dec 9th is the end). So time is running out to donate. Make sure you head over and donate or share with others who may be interested. Huge thank you to all those who have already given. The video below is me explaining a little about my life with Dysautonomia and why we need more money for research. 



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,800, keep donating and hopefully we can reach $10,000.


Wednesday, 12 November 2014

When being a woman is an impediment to medical care: Dysautonomia

(source)

In 2007 I was on the search for an answer to a series of unusual and debilitating symptoms that had first developed in 2006. I was working in health, on a neurological and geriatric rehabilitation ward. I knew my way around the health system. I knew people had poor experiences with that system at times, but never thought I would be one of them. So I was unprepared as the General Physician sat before me and five minutes into our consultation he uttered the words “when a woman your age comes in with these symptoms it's always in their head.” I knew where he was going when he began our session by asking me a haphazard series of questions straight from the Beck Anxiety and Depression Scale. He had me pegged before I even walked in the door. And I'm sure my tears of anger and frustration fit perfectly into his diagnosis. As I sit here today with a cardiac pacemaker beating away in my chest and the diagnosis of a neurodegenerative autonomic disorder, those words still burn. And they burn even more knowing that I am not alone in my experience.

A quick review of patient support networks reveal a clear pattern of attributing physiological symptoms to a mental health diagnosis. And as many of the reported comments reveal, being female is a clear factor in this leap to a psychological aetiology. Comments range from being “too young”, or “too pretty”. That a “boyfriend”, “husband”, or “baby” would cure them. Other terms from “Working Women's Syndrome” to “Bored Housewife” are used. And diagnoses such as Anxiety and Depression are doled out with alarming regularity, and frequently without referral to an appropriate professional for official diagnosis or treatment.

Dysautonomia is an umbrella term for a collection of illnesses that affect the Autonomic Nervous System, the body's autopilot. Many forms appear to have a direct bias towards women (for example, Postural Orthostatic Tachycardia Syndrome is thought to have a 5:1 bias in favour of women) and pregnancy is known to be a trigger for symptom development. This collection of disorders remain relatively unknown in medical and lay communities alike. As a result, when patients present with what can be a times a group of vague and disparate symptoms, they are often misdiagnosed with a range of mental health diagnoses.

In truth whilst poor recognition and lack of appropriate referral is a concerning factor, more so is the pervasive trend of diagnosing patients with mental health conditions, particularly if female, when diagnosis is unclear. Often these diagnoses are based on old societal notions of the weak or hysterical female. In her post, The Woman Patient: Is Her Voice Heard?, published on the Sharing Mayo Clinic website, Dr Mary O'Conner, Chair of the Department of Orthopaedics, Mayo Clinic Florida examines the way women are perceived societally and by the medical community:

Of course we want to believe that we see everyone as equal. But in reality we do not. We are socialized to believe that women are more likely to have pain than men, or at least are more willing to complain of pain than men. Furthermore, women are seen as the "weaker sex" and our decisions may be negatively influence by the "time of the month" or hormonal status. While we know that there are true biological difference in pain pathways, physical strength and hormonal levels, these differences are framed in a negative light for women. Doctors see female patients through this spectrum.

This trend is not restricted to complex disorders such as the Dysautonomias. Simply being female is a significant factor in access to appropriate health care across numerous disorders. Earlier this year the World Heart Foundation, recognised a pervasive problem relating to the treatment of women with cardiac conditions. The group called for an end to gender bias revealing that women who present with cardiac events often receive poorer diagnoses and follow up compared to male counterparts. An excellent series of articles on this issue can be found on the My Heart Sisters website. With problems identified from the way research is conducted, to the way women are treated when they present at a clinic or the ED. In some cases the outcomes of these biases, unconscious or conscious, are deadly. A recent high profile example from the UK, demonstrates that this issue is not confined to any particular country or diagnosis. Dr Lisa Smirl, a Cambridge educated university professor, died of Lung Cancer at the age of 37, after repeatedly being told her symptoms were related to Anxiety of Depression. She died a year after her cancer diagnosis was finally confirmed.

A common complaint from patients of both genders, is that they feel unheard by their doctors when trying to explain their symptoms and concerns. However, research suggests that female patients are at a greater disadvantage even at this preliminary stage of the diagnostic process. A paper from Family Medicine entitled Speaking and interruptions during primary care office visits, found that gender was a significant factor in the way residents interacted with their patients. Whilst female practitioners interrupted to a lesser degree than their male counterparts, both groups interrupted their female patients far more than their male patients. Such interruptions are an indication that the doctor is not actively listening to their patient. Instead pursuing a preconceived diagnostic path. It is this sort of dynamic that leads to a break down in doctor-patient relations and subsequent misdiagnosis.

The problem is two fold. Misattributing physiological symptoms to mental health diagnoses, further stigmatises those with psychological issues. Depression and Anxiety in particular, have become the catch all for patients with what many believe are not real symptoms. And in doing so they further minimise and trivialise these very real illnesses. Even should a patient have a comorbid diagnosis of Depression or Anxiety (recent statistics show these are commonly occurring in the population and especially in chronic illnesses) they do not provide some magical protective factor that means that no other illnesses can occur. In a 2012 paper in the Social Psychiatry and Psychiatric Epidemiology, February 2012, a review of 30 general practice attendees across Victoria, Australia revealed that, “The prevalence of probable depression increased with increasing number of chronic physical conditions (1 condition: 23%; 2 conditions: 27%; 3 conditions: 30%; 4 conditions: 31%; 5 or more conditions: 41%).” To add to this issue, evidence consistently shows (see CDC, 2011, BMJ 2013 for review) that those with mental health diagnoses have consistently poorer health outcomes and lower life expectancies, posited up to 30yrs in some cases. In part due to the stigma attached to such diagnoses but also the issue that any new symptoms are viewed through a mental health lens, and dismissed as another manifestation of the underlying psychiatric diagnosis. Patients report hiding previous mental health issues for fear of further stigmatising. And even those who wish help fail to seek it for fear of the diagnosis impairing future health care.

Secondly, this misattribution means that manageable, and potentially treatable, diagnoses may be overlooked and diagnosis delayed. Patients are left with increasing poor health and disability. In some cases, by the time diagnosis occurs patients have been forced to stop working, leave school, relationships and finances are in turmoil. Patients are left with increasing and untreated symptoms that impact on every aspect of their lives. For example, recent large self report data (703participants) complied by Dysautonomia International on the most common Dysautonomia subtype Postural Orthostatic Tachycardia Syndrome (POTS), reveals that many patients are waiting on average six years to diagnosis, although there are cases reporting a 20-30yrs wait from initial symptom presentation to diagnosis. This data also demonstrated an incredibly high misdiagnosis of Depression and Anxiety, nebulous “Stress,” and “All in your head,” in the population. In total 83% of respondants had been received some form of mental health diagnosis prior to being diagnosed with POTS. Psychology and Dysautonomia continue to be a contentious area for patients and the medical community alike. Yet available research reveals that Dysautonomia patients are no more likely to develop Anxiety and Depression than the wider community when autonomic symptoms are controlled for in diagnostic tools.

“It's all in your head,” in all it's incarnations, has become a unifying experience for many women. The idea of being bothersome or wasting the time of various medical professionals is a continual theme found on patient support boards. Whilst men can also encounter this phenomenon on the diagnostic journey, an analysis of the comments themselves reveal an underlying gender issue, with references to child bearing and relationships common. This problem is pervasive across numerous diagnoses and countries such that simply being a woman is an impediment to receiving appropriate diagnosis and treatment. I often wonder where I would be if I had listened to the General Physician I saw all those years ago. Thankfully, his attitude fuelled an anger and determination that led me to an appropriate diagnosis and treating team. But a worry persists for those patients who are unable or unwilling to challenge their doctors and would simply accept such a diagnosis. Thus never receiving the appropriate diagnosis and treatment they deserve. It is time for the medical establishment and the patient community to step up and work together to demand better, non gender-biased treatment for all.

The following are a small selection of experiences of female patients from Australia and New Zealand, who were later diagnosed with a form of Dysautonomia. Whilst some show a basic disregard for patients and their experiences, many highlight the inherent bias in the way symptoms are veiwed:

POTS (Postural Orthostatic Tachycardia Syndrome); NCS (Neurocardiogenic Syncope); OI (Orthostatic Intolerance); IST (Inappropriate Sinus Tachycardia); ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome); EDS (Ehler's Danlos Syndrome)

"I would really like to see one of these "so called" Episodes you people say you have, (Dr then rolled his eyes). I think you just started hyperventilating and you need to breathe into a brown paper bag." Said by a ER Doctor, the 1st time I went to the hospital after a faint at my clothesline. This was said with no prior communication, no questions asked, no tests done.
J, 36, Australia
Diagnosed: Dysautonomia, including POTS with NCS and recently IST
Time to Diagnosis: 8 Months (Nov 2011 to July 2012, age then 34)
Misdiagnosed: Anxiety, Stress,

It must all be because you had a bad childhood and you are depressed" (I didn't and I wasn't), said by a Rheumatologist prior to diagnosis.”
B,38, Australia
Diagnosed: POTS and ME/CFS
Time to diagnosis: 2 Years
Misdiagnosed: Bad neck, Migraines, Vestibular Neuronitis, Fibromyalgia, Depression.

I've had symptoms since I was a pre-teen. My diagnosis happened in a neurologist's office here in NZ. He said "I don't know why you are here..." when I walked in. "...you people don't need a team of doctors, you just need a cardiologist and to get on with it". I began to systematically explain my problems. He began to look at my hospital record. When we had gone through all of it and he had done a thorough neurological exam, he said "Well. No. I don’t think you have POTS. You have Pandysautonomia. Pan meaning all. Dysautonomia meaning dysfunction of the Autonomic Nervous System. It will continue to progress and one day you'll stop breathing, but that is usually later. You should go and do the things you want to do with your family now. I don't feel I need to see you again. Any questions?" I was numb. Shocked. Angry and confused. He stood up and indicated the door. So I stood up too. I wasn't offered any kind of support or referred to any organisations. I went home and began the process of understanding exactly what Dysautonomia is through my own research. I am now 39 years old. I was 37 at the time of the diagnosis.
Rachel, 39, New Zealand
Diagnosis: Pandysautonomia
Time to Diagnosis: 30 years
Misdiagnosed: Abdominal migraine, Depression, and POTS

You seem stressed, antidepressants and lots of rest, relaxing music, massages and you will come right said by an endocrinologist.
H 29, Australia.
Diagnosed: POTS and NCS
Time to diagnosis: 15 years 2014
Misdiagnosed: Depression, Anxiety, A young woman with kids.

After passing out in one endocrinologists waiting room, I was told to "Get up."Then dragged off to his office where I was shaking, pale and slurring my words. He kicked my husband out of the room and asked if he was beating me and If I was there looking for attention. I started to cry and said no my husband is amazing and he had it all wrong. So he wrote me a script for antidepressants and told me to get more sleep. He leaned over me and said "There is nothing wrong with you" I left so embarrassed and I was diagnosed one week later by a cardiologist.

Before diagnosis, when I was still working, I tried to explain to a GP about my exhaustion and the fact that I seemed to be getting two viruses a month. He suggested I drive home every lunchtime and take a quick nap.

After a 15 minute consult with a cardiologist, she said: “This is pretty much somatising.” When I asked her to explain what it was about my story that had led her to that (very complex) diagnosis she said: “I see so many women like you who have nice husbands and young children and are high achieving who express their emotions through physical complaints.” When I explained that I am a person who knows my feelings very well and have no trouble showing or articulating them she waved her arm dismissively and said: “everyone who is told they’re somatising says that. No one likes to be told they have a psychological problem.”
A, 43, Australia
Diagnosis: ME which includes POTS and autonomic dysfunctions amongst its symptoms
Time to diagnose: 10 years.
Incorrect diagnoses: Raising young children, childcare bugs, caring too much about other people, Pelvic Instability, Insomnia, Irritable Bowel Syndrome, Worried Well, Fibromyalgia, Birth Trauma, Somatoform Disorder, Somatic Depression with Anorexia Nervosa, focusing too much on my body, listening too little to my body.

I was sick for 15 years before I was diagnosed with dysautonomia. Even now, my specialists aren’t sure what’s causing my dysautonomia - I have EDS and a mast cell disorder but it seems there may be something more as well. For most of that time I had the useless catch-all labels of CFS and Fibromyalgia which as far as I can tell is just a bunch of words that mean "We have no idea, stop being difficult and go away." It wasn’t until my dysautonomia was diagnosed that I started to be prescribed medications like Florinef, Midodrine, and Propranalol which have helped me to get a lot more functioning back.
R, 39, Australia
Time to diagnosis: 15+ years of being housebound and bedridden.

Before any diagnosis was given, the GP refused to give me any more referrals to specialists to explore why I had so many strange symptoms, telling me "there comes a time when enough is enough and you just have to learn to live with your symptoms." And from the same female GP "you'll feel better when your triplets start school, like I did with my twins."
J, 43, Australia.
Diagnosed: EDS, POTS, Pineal Cyst.
Time to diagnosis: 1.5yrs or probably a lot longer (2012)
Misdiagnosed: Depression, Anxiety, Silent Migraine.

GP "I don't think you are sick. I think your are just suffering from anxiety", ME "then why is my lying HR normal and my standing HR in the 150s? GP "you must be scared of standing up" said despite my diagnosis of Dysautonomia by two neurologists.

"I know you people THINK you have a condition" said by a cardiologist after I raised the possibility of POTS.
A, 41, Australia.
Diagnosed: Primary Dysautonomia.
Time to diagnosis: 3 months (2010)
Misdiagnosed: Atypical preeclampsia, Postnatal Depression/Anxiety

I'm now 45 and 4 years out of the workforce. I've been looking for answers since I was 17. Always diverted to gynos and psychs, even after I fainted at work in 2010, the hospital told me I'll be ok it was just a faint. I kept telling them I did not feel right and every time they discharged me I would faint before I got out of the door. After 2 weeks of this nonsense I left in disgust and went to my GP. By pure coincidence he had just been to a seminar held by my current cardiologist. I was referred to him for a TTT and finally diagnosed. Still struggling with the psych imprint.
T, 45, Australia.

One cardiologist (male) told me that I needed to relax, that if the first tablet didn't work I had no hope and that he had "a number of young, thin, high achieving women who simply don't drink enough". He then stopped talking to me and spoke to my husband for the rest of the appointment. Needless to say I didn't go back.
M, 41, Australia.
Diagnosed: Progressive Neurodegenerative Automomic Disorder. Including NCS and OI
Time to diagnosis: 1yr for original NCS diagnosis
Misdiagnosed: Depression, Anxiety, Working Woman's Syndrome.

"Are you sure you aren't just having panic attacks when you stand up?" (ER doctor, post diagnosis of POTS)
J, 30, Australia
Diagnoses: POTS/dysautonmia
Time to diagnosis: 5 years to diagnosis
Incorrect diagnoses: Panic Disorder, Nocturnal Panic Attacks, inactivity/unfitness

Thank you to all who shared their experiences.


Michelle

Tuesday, 11 November 2014

Non-compliant, Empowered Patient, or just plain tired.



I'm sitting on my bed looking at an unfilled medication script lying on the sheets in front of me. I've had it for a few weeks now, but am yet to take it to the pharmacy. I've tried it before with little success, but personality-bereft specialist number 28 has told me to try it again. It was written up before I had even been given a chance to agree or disagree. He had decided I should try it and that was it.

When I said it was like taking Tic Tacs last time, his response was:

It probably wasn't a high enough dose.

When I asked if he really thought it would work in my case:

It helps some people.

Are there side-effects?

It can drop your blood pressure.

When I was still not keen.

Keep going up in dose until you either have too many side-effects or it works.

When I told him I never have sedative effects from medications (a long-standing, well-documented issue), including this one:

It'll help you sleep.

And so I left, unheard, ignored, with yet another script in my hand.

And I sit here today with the same script sitting unfilled before me. Knowing that I have to see him again next month to update him on my progress. Knowing that the more I look at the script the more unlikely I am to fill it. When you know a doctor hasn't listened, it is very hard to trust their treatment decision.

So much of treating this disorder is trial and error. It is the case of Medication A helps some people. We don't know why. Or how to predict who it'll work for. Or who it will give horrendous side-effects. But you must try it. And so you do. You think doctor knows best. They treat this so they must be making a reasoned decision on what they prescribe. And then you find that you can't control your leg muscles, or that you are in so much pain from excessive vasoconstriction that you feel like you're having a stroke or heart attack, or that you have uncontrolled vomiting and diarrhoea, or that your blood pressure bottoms out, or that your mood is altered, or..... Without knowing a cause, symptom management can lead to many unpredictable and unpleasant reactions.

I've spoken before about the fact that it is patients who bare the greatest burden of any treatment decision. All treatment decisions come with a risk/benefit analysis. All treatment options have risks attached to them. One look at the information sheet that comes with any medication and you are given a list of the generic side-effects, gastrointestinal disturbance, nausea etc, then there are a list of less common and more serious side-effects. As a patient you have to weigh that up against a potential gain, usually symptom control, that may be achieved. For example, I have nausea and vomiting regularly. The only anti-nausea medication that now works for me, contributes to constipation, which I already experience. Which means I have to now take another medication to counteract the increased constipation. But if I didn't take the anti-nausea I'd never eat and could hardly function. And so the cycle goes.

As a patient you have to weigh up potential gain against potential risk.
And that equation will be different for each patient.

For each of us that will be different. My acceptable risk will be different to another patient's acceptable risk. Another example, for me the benefits of taking Florinef outweigh the gastrointestinal distress, or the long term potential side-effects such as osteoporosis or glaucoma. Others are not willing to take that risk. We, as individual patients, must make the decision that best serves our individual presentation, our beliefs, our desire to use or not use traditional medical treatments, what we can afford, what we can access, what level of potential gain offsets potential risk, what other conditions we have, and what emotional investment we are willing to put into the hope-try-disappointment/success cycle.

After 8 years I am tired of maybe. Maybe this treatment will work. Maybe it'll not give you horrendous side-effects. Maybe it will be easy to come off. Maybe it wont contribute to the difficulties inherent to polypharmacy.

It is me who has to pay the greatest burden for any treatment. 

I am happy to try a medication that has a higher level of success based on my individual presentation. A reasoned decision. Not a maybe decision. I am not early in my diagnostic journey. I have done the hard yards. I have tried many different treatments. Even ones I was not keen to try. The last of which dropped my blood pressure and altered my mood to such an extent that it was apparent to all around me. I am not keen to go down the maybe track again.

My experience as a long-term patient is valid. I know my body. I know how it reacts. I come from a background in health and research. I know how to weigh up the data. I also appreciate and value the expertise of my doctors, it's why I go to them in the first place. But more importantly,

I am the expert in me. 

I already take 15 tablets each day, not including breakthrough meds for things such as pain and nausea. Adding yet another two or three to the mix (not including the more recent, and completely impractical, recommendation of taking an expensive anti-nausea medication and 2-3 enzyme tablets before each of six small meals a day), is not high on my agenda. Especially not without a fairly high potential return. I am aware that nothing is 100%, medicine doesn't work that way. There are too many variables in the human body. But I am also not happy with the carte blanche attitude towards script writing by some of the medical professionals I have encountered over the years. And a tendency to ignore or underplay the potential downside to a medication.

Each time it doesn't work, or there are side-effects, my already beleaguered body does not bounce back. It does not simply get over it. It takes weeks or sometimes months. Each moment of stability is hard fought and I am not willing to surrender it to a less than convincing maybe.

I am all for a reasoned, research-based decision that is arrived at 
after a collaborative discussion between myself and a specialist. 
Not one which is forced upon me 
with a dash of hope, 
a very large maybe, 
or a paternalistic "because I say so".

It is costly, physically, financially, and emotionally. It is also costly in terms of time. Each trial equals time. Sometimes time lost, sometimes time well spent. But mostly time handed over for a hope and a prayer. If I am to invest 3mths or more in a medication trial, when I live with a progressive illness, I want to know that the odds are in my favour. Each month with no, or negative return, equals another month of illness, of pain, of nausea, of life not lived. Or potentially, a worsening of health. That is a big ask, and one frequently unacknowledged.

I am a motivated patient. I want to maximise my health and in turn decrease my disability.

I am not non-compliant.

I am empowered.

But I am also tired of managing an increasing level of disability and illness, and having to deal with a medical system which seems tailored to a generic norm, and reluctant to listen to the very patients who must live with the decisions made.

Michelle

Non-Compliant examines decision making processes in depth.



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,800, keep donating and hopefully we can reach $10,000.


Friday, 31 October 2014

Julia: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014


The final piece for Exploring Dysautonomia Through the Arts comes from Julia. I loved this song from the first time I heard it and thought it was an appropriate way to end the month. Living with any chronic illness is filled with challenges and Dysautonomia is no different. But as hard as it is at times we all keep putting the next foot down on the path. We fight big and small battles each day, but we are all still standing. This month has really shown the creative spirit that exists in the community and I've found both inspiration and kindred spirits. Huge thank you to everyone who has submitted, read, commented or shared.



Julia contributed to last years Dysautonomia Awareness Month that focused on Australian and New Zealand stories. You can find her story here.

This is a song that I wrote (with the help of a friend whi is a music therapist). I was having a really rough time last year and couldn't sleep because of everything that was going on so I thought I'd put my words to music. It it the first song I have ever written.



I'm Up For the Fight 

I'm always behind
Always having to catch up,    
Catch Up
If I could just get through
With no hiccups,   
Catch up....  Catch up

If it’s not one thing
It’s another
But I'm always up for the fight
If it’s not one thing
It’s another
But I'm always up for the fight
If it’s not one thing
It’s another
But I'm always up for the fight
I'm done with one thing here comes another
But I'm always up for the fight

Every time I try to just, just be
Just be
It’s like my body is punishing me,    
Punishing me
Stop, punishing me

[CHORUS]

At night when my brain is spinning
Reality can hit hard
My days are filled with denial
Reality can be hard, 
Can be Hard
Reality can be hard

[CHORUS]

I'm up for the fight ----------- (x4)

[CHORUS] 




Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,500, keep donating and hopefully we can reach $10,000.

Gracey: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014


Next up on Exploring Dysautonomia Through the Arts is, Gracey. Her work perfectly captures the experience of Dysautonomia. The people walking by while we are horizontal, two different worlds coexisting, yet often feeling so far apart.


I used to take being upright for granted. I could walk and run and play and sit and stand. I loved to shop, and I used to spend a lot of time shopping! I loved to play football and badminton. I liked riding my bike and going for walks through the countryside.

Now I find all those things very difficult. I have Postural Orthostatic Tachycardia Syndrome which is a type of dysautonomia. Everything upright is very difficult for me. Standing can make me dizzy and breathless, make me feel nauseous and in pain. Even sitting can make me feel awful. 

Sometimes I have good days when I manage to push through and do some of the things I have always enjoyed doing. And on the bad days all I can do is lie in a heap and watch the world rush past me. But I don't give up hope because every day gets us one day closer to the day when we find a cure!



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,400, keep donating and hopefully we can reach $10,000.


Thursday, 30 October 2014

Soraya: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

(Comfort, Edvard Munch 1907)

Next up on Exploring Dysautonomia through the Arts is Soraya. Soraya's poem, Comfort, explores the conflicts that many of us face when dealing with illness. Truth and comfort. Our need for both changes each day as we and our worlds change. Balancing both can be extremely difficult.



Soraya Ramhormoz is a writer, patient advocate, social justice and science literacy activist.
She writes about her experiences as a patient and as a human being moving through the world with a mysterious debilitating illness. She hopes her excruciatingly honest descriptions of her experiences will raise awareness, empathy, and compassion that will translate into advocacy for people with chronic and terminal illnesses.

In this poem, I tried to deal with the conflicting emotions brought out by the experience of having a chronic illness like Dysautonomia. We need both comfort and truth when dealing with a life-changing experience like Dysautonomia, but what happens when comfort and truth are in conflict? Which do we choose? For me, the answer can shift from moment to moment. I pride myself in my ability to deal with harsh truths, and I value honesty from medical practitioners and my family and friends alike. But having the comfort of denial stripped from me has been a painful, emptying experience.

I wanted to try to capture the emotional shifts we all have in dealing with chronic illness. And I want people to know that it's ok to be both angry when people we trust lie to us in the name of comforting us -and to wish they would lie to us to comfort us once again. We can be angry at the lie, and angry at the loss of the lie at the same time.



Comfort

"It'll be all right."
In the beginning, that's what they say.
You let the words settle into you, comfort you,
like you're supposed to.
Of course, it'll be all right.


You learn it's a lie in slow,


sudden
bursts


You're angry that they lie to you.


You wish they'd stop
They say that to everyone
It doesn't mean anything anymore to you

Then they stop saying that to you
They say that to everyone else
It doesn't mean anything anymore to them


You're glad at first
that they aren't lying
to you anymore


But what do you put
there,
where
the lie used to go?

What do you use
to fill the hole besides the longing
for the lie?



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,300, keep donating and hopefully we can reach $10,000.

Wednesday, 29 October 2014

Kali: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014



Today's submission for Exploring Dysautonomia Through the Arts come from Kali. I love the thought Kali has put into her creation. Her explanation of all the aspects of the piece and her use of salt in the creation are quite fabulous.



My name is Kali and I'm 16 years old. I was diagnosed with POTS abotu 2 years ago but I've been struggling with it most of my life.

For the Dysautonomia awareness month contest I created a painting. The painting symbolizes a lot of patients with any form of Dysautonomia, and the butterfly is actually the color for Dysautonomia, which is turquoise. I worked really hard on this painting, and my hands are actually covered in dye and paint (which will wash off in actually couple days), but it's the thought that counts really, the thought that shows that I worked on something that I truly believe in.

In my painting it displays a butterfly on a flower. This butterfly is a great symbol for me because a butterfly has gone through many changes through its life, it's struggled to get where it's at, it had to adapt. All butterflies are unique, like this one, such as all people with POTS or anyone with Dysautonomia are unique because they have different symptoms. Like my GI doctor says "I'm a complicated and unique case". The butterfly is actually made out of salt and food coloring because people with POTS have to increase there salt intake to help with retaining fluids, so salt is very important to my everyday life. Overall, my painting symbolizes who I am.   



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,400, keep donating and hopefully we can reach $10,000.