I am the outlier.

In research we commonly deal with outliers.

Pesky scores that vary wildly from the general sample. They don’t fit into the norm. Their very presence can compromise the dataset. In my line of work outliers generally signal one of two things; a participant with radical views, or someone taking the piss.

Best to get rid of the sucker.

outlier

But recently I realised that I am the outlier.

I am the nuance that doctors dismiss, reject, or refer, or tell me bluntly “I don’t know what to do with you”.

I am the difficult patient who doesn’t fit into the medical framework. Who doesn’t present the way others do. Who doesn’t respond to treatment in the manner expected.

Pharmaceutical psychiatric treatment has little success with me. Antidepressants make me suicidal. Antipsychotics have never stopped the voices. Sleeping pills fail to put me to sleep.

I’m tested for epilepsy because my psychosis is ”abnormal”. I’m “high functioning” to the point of rejection from doctors and hospitals because I am not sick enough. I’m misdiagnosed. I’m turned away. I don’t fit the stereotype of ”bipolar”; whatever that may be. Then I fall down to the darkest, bleakest most dreadful depths and the doctors don’t believe I will be able to function. But I do.

I am the outlier.

I am diagnosed with a rare subform of a rare autoimmune disease that no one has ever heard of. Random allergies that make no sense. Hubster marvels how I can chow down a spicy curry no problem, but end up in hospital after a sandwich. I’m told I need medication, I’m given a poor prognosis. And now, undedicated with no treatment other than dietary changes I shouldn’t be in remission. But I am.

I am the outlier.

After years of trying to have a child, and seven or so early miscarriages under my belt I seek medical assistance. At first no one takes me seriously because I am not even thirty. Then, at 29 years old it is discovered that my reproductive years are ending. I’m to descend into premature menopause. This doesn’t run in the family.

I am the outlier.

Suddenly I’m being thrust into the world of IVF.. ‘I’m told I need to act now. I’m told I need high doses of medication. Friends my age spend their money on holidays and drinks. We spend our money on medical bills.

Then I start the process and am told my bloodwork is bad. That IVF isn’t possible. That it may never be possible for me.

I am the outlier.

And as I put my hands on my growing belly, knowing of the tiny heart beating inside, I know that you, little one, are an outlier too.

The one that arrived the very month when I was told it wasn’t possible. The one that came when I had all but given up. The one that blessed me with its presence naturally, the very cycle IVF was cancelled. The one I didn’t lose.

You are my little outlier. The most beautiful outlier there ever was. Every child is a miracle, but you are an extra special. You beat the odds.

Together we may not be representative of the population. We may have different needs to others. We may be the outliers.

But who wants to be average anyway?

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Dungeons and Doctors

It has only been recently that I have realised just how much I now mistrust doctors, and how little faith I have in the medical system.

I am the worst kind of patient. I spend hours trawling through medical journals before appointments, comparing random control trials. It must be the researcher in me.  I project my point of view in a fairly assertive manner. I am not afraid to ask for what I want. I am not afraid to offer my view on the treatment protocol and dosage. I don’t want to be told “you’re fine”, or “you’re not fine”. I want to be given print outs from all my tests and all my procedures  and given my exact blood levels so I can determine for myself my exact level of “fineness”.

I, with absolutely no medical training, believe I know more than doctors about my body and mind. And I really wish I could dampen this line of thinking. I wish I could trust the people that are responsible for my care. I wish I didn’t question every damn aspect of my treatment.

But you see, my past experiences have made me this way. Over the years I have had to learn how to navigate the medical system.  I am used to having to fight tooth and nail for the treatment I need. I expect to be dismissed. I expect to be turned away. I expect to be denied treatment. So I arrive at each appointment on the defence and ready for battle.

Amongst other nitwitish behaviour, I have had the privilege of doctors telling me that:
– I was just a new mother who needed a bit of sleep. Actually I was psychotic and suicidal, and had just spent 45 minutes describing my symptoms in detail to the doctor. My baby was seven months old and had been sleeping through the night for at least five of them. A week later I was admitted to a mother and baby unit where I was kept for 2 months. The hospital told me I was one of the worst cases they had seen.

– That I had a case of gastro, and perhaps some endometriosis pain. I was actually in agony due to my autoimmune disease. And when I say agony, I mean that I had to be tanked up on IV morphine. I feel this instance is partially forgivable since my disease is so incredibly rare. But surely the fact that I was screaming in pain and had to be administered morphine was a clue that this wasn’t a case of “normal” gastro, and warranted further investigation.

– When admitted to the psychiatric ward, I was initially refused treatment for my autoimmune disease. Apparently, despite having a formal diagnosis from biopsy results from another doctor, and despite my diagnostic doctor giving explicit written instructions on the type and dosage of medication I needed, my 25 year old registrar didn’t believe my condition existed as she hadn’t heard of it. Bitch, please. My specialist with decades of experience hadn’t heard of it until recently. And despite the fact that I consider myself a reasonably intelligent person I highly doubt I could fabricate such an elaborate diagnosis involving the infiltration of certain white blood cells.

– as a psychiatric inpatient, my gastroenterology team continually avoided seeing me. My nurses called them repeatedly. It was made abundantly clear that I was their least priority. I dunno. Maybe I smelled?

– as an inpatient my surgical team repeatedly prepped me for the surgery and procedures I needed, before cancelling at the last minute. I understand hospitals are busy places and things get bumped. But I was an inpatient at that hospital for 9 weeks, and each time I was told I was at the top of the list. To this day I am not sure why I wasn’t given the treatment I needed and why I eventually had to be referred to entirely different hospital to receive it. And how that hospital managed to conduct the surgery on the day and time they said they would.

– I was explicitly denied nutritional treatment because I was a psychiatric patient. Even though my autoimmune disease is heavily related to diet. They did tell me that if I were on a medical ward I could receive the treatment. Which didn’t improve the situation. Or my attitude towards them.

– I was left in severe pain, for eight hours, because an the on call doctor basically couldn’t be bothered to come down to the psych ward. When he did arrive the next morning it eventuated that I was actually extremely ill, and was rushed off for an emergency CT scan. Not a hypochondriac after all!

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I believe the core of the problem was that I was a psychiatric patient.

When you are a psychiatric patient you lose your voice. You lose your power. You are considered to be “crazy”. I was in a no win situation where I was given poor and sometimes downright neglectful medical treatment, but if I tried to object I was seen as over reacting, or causing trouble. I was “not in my right mind” after all. What the hell do I know? If I objected,I was medicated, because that’s what happens in psychiatric wards. And if I objected to that I was threatened with injections and security guards. I was silenced.

This would not happen to someone with a physical illness, and a physical illness only.

I often feel sorry for my newer doctors today. The ones who have done nothing wrong. The ones who are incredibly helpful and supportive. The ones who listen to me. The ones who are being punished for the actions of others.

But there is just this large part of me that refuses to hand over my trust to them. I NEED to be in control over my care. I never want to be in the powerless situation I was last year.

I just have this overwhelming feeling that to ensure my own wellbeing I need to keep fighting these Dungeons and Doctors.

Death By Chia Seeds

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So recently, in an attempt to get my physical health under control I’ve gone all uber health freak on my autoimmune disease’s ass.

Raw food. Yep. Quinoa. Yep. Gluten free. Yep. Cutting out all (ok. MOST) packaged foods, caffeine and alcohol. Yep. Making bread. Yep. Milling grains. Yep. You may mock, but it’s pretty much the only control I feel I have over my disease. And I don’t do well when I feel I have no control. AND I feel a whole lot better doing it. Physically the eosinophil infiltration in my gut have gone down. “Keep up the diet!” my immunologist told me. So I shall.

Anyhoo, so the other day I was really craving a chocolate milkshake, so decided to make the next best thing: a raw cacao and banana smoothie. Now I don’t have the best record with smoothies. Sure, they are super healthy for most people. But for me, no matter whether they are green, berry, banana, or cacao, I always seem to end up praying to the porcelain Gods for approximately 48 hours after consumption.

The smoothie of doom.

The smoothie of doom.

Did this stop me? No.

The recipe called for a large number of chia seeds, unsoaked, which was kinda weird. But hey, I’m all for trying new things.  I made the stupid smoothie. Took a sip, and almost immediately my tongue and lips started itching and burning.

Hmmm. That’s weird. I thought, trying to SCRATCH my tongue. Never had a tongue itch before. Then I turned the page in my book and in a rather regrettably cavalier fashion took another sip.

The burning got worse, and now even my ears started to feel like they were on fire. Clearly I like to live dangerously so I took another sip.

Then my tongue started swelling up, and I completely flipped out.

Oh my God! I’m having an allergic reaction! My airways are going to get blocked and I’m going to DIE! I randomly ran around the kitchen. Why. I’m not quite sure.

I tried to contact my Mum. Naturally when I called her number, I heard her phone ringing right next to me. Next I sent Hubster a message asking whether he thought I was having an allergic reaction. He suggested it might be hay fever (probably so not to panic me, which didn’t work because news flash: I was panicked). I gave up on Hubster. He wasn’t any use anyway as he was working in the city and I knew he would never get home in time to administer CPR or call a coroner or whatever it was that I was going to need.

I really didn’t know what to do. I have plenty of allergies/intolerances but they tend to affect my gastrointestinal system, not my mouth. So I sat back in an armchair and thought. So, this is how it ends.

Luckily at that moment my Mum arrived. Almost simultaneously my tongue swelling started to go down. I felt a bit silly for the terror I had felt, and was actually pretty glad no one was around to witness my freak out. With venom I chucked out the rest of my smoothie, and went upstairs to lie down.

Then the vomiting started. Then the unbearable pain. I cannot begin to even describe the pain I feel when I eat something I cannot tolerate. But lets just go ahead with BAD. Mum came up with a glass of water and I told her I think I had had an allergic reaction to chia seeds and begrudgingly admitted that I may need to see a doctor.

Just for future note. If you ever want to get in to see your GP super quickly tell them you are having an allergic reaction. They will tell you to go to hospital, but once you convince them that that isn’t going to happen, they will take you in immediately, and you will even get to go and lie down in a germ infested bed as opposed to the germ infested waiting room.

The first thing I asked for was a vomit bag. Then a maxalon injection. My GP came in to see me, the GP who knows ALL about my health troubles. And she was all “Hello Rachael…what have you eaten now?”

“It was the damn chia seeds!” I told her.

“Chia seeds. That’s unusual!” She said.

“Everything about me is unusual!”

They wanted to give me an anti-histamine injection but couldn’t because of the Lithium. Which is pretty much the story of my life. So I had to lay in the bed for ages under observation, listening to an old guy in the bed next to me getting some sort of abscess cut out of his ear.

I must have looked pretty bad at one point because I had the nurse and doctor hovering over me. And the nurse was saying “Rachael? Are you still with us?” I didn’t want to tell them that I was actually trying to meditate, the way I did in labour, to get myself through the pain, and their questions were TOTALLY DISTRACTING ME. So I just muttered a grumpy “Yes. I’m still here.”

After a designated amount of time, Mum and I left the practice, me barely able to walk and clutching the vomit bag. On the way home, without a whole lot of warning, I puked into the bag, which was all very well and good except the BAG HAD A HOLE IN IT. Now what kind of bag, with the sole design of containing vomit, has a hole in it?! I’m not sure I have ever vomited that much in my life. And believe me. I’m no stranger to the power spew. The holey bag was becoming a major issue.

Mum started winding down the windows and laughing (which she later told me was awkward laughter but at the time felt a trifle unsympathetic), and because I always get the giggles at inappropriate moments too I started laughing. It is almost impossible to laugh and spew at the same time. It was not a pretty sight.

We got home and since I was covered in vomit I was chucked out of the car to dispose of my vomit bag before coming in. I seized the opportunity to throw up in the hedge. I then spent the rest of the evening rolling around in agony and rushing to the toilet.

So, lesson learned. No chia seeds. No smoothies. And if your mouth starts getting itchy after eating, just stop (no matter how good it tastes).

Chia seeds 1: Rachael: 0.

Doctor, Doctor, give me the news….!

Well to say last night was a bad night would be an understatement. Psychosis was in full swing, and to make matters worse I was profoundly agitated.

I wasn’t quite climbing the walls, but I was pacing the ward counting, which is nearly as bad. I got into a minor dispute with Jenni (you can call me fat, but no body says my baby boy isn’t cute) which resulted in a room change for her.

I felt as if i was going to explode from the inside out.

Around midnight the on call psychiatrist came to assess me. He was a cheery Indian fellow who I liked immediately. I told him my life story and he made more sense of my hallucinations in 15 minutes than anyone ever had before.

Then he started talking meds. “I had a look at your ECG” he told me. “you have tachycardia”. This I was well aware of. He then gave me a brief anatomy and physiology lesson to which I nodded.

“so basically the seroquel is causing the tachycardia and heart palpitations, and therefore feeding my agitation.” I said.

“correct. You are a very intelligent girl to understand all that I told you.”

I laughed. “I have studied a lot. Too much.”

“what do you study?” he asked.

“I am doing a PhD in psychology…mental illness and stigma.” Oh the irony…

The doctor laughed. “me too! I’m just starting out, I’m hoping to devise a new stigma scale.” (at this point my mind boggled. Double barreled doctor. Would he introduce himself as Doctor Doctor M.D. P.H.D? Or would he go all sophisticated and go by Doctor Professor?)

And so we talked. The absurdity of discussing academics in a psychiatric ward as a patient to my treating physician. Bizarre!

Finally the nurse came back with my med chart and a new anti psychotic to try. Doctor/patient roles were quickly resumed and collegial roles abandoned.

But as he left he gave my shoulder a squeeze. “you will be ok Rachael”

And I will.

The day that I dreaded mothers day

This semester has been a bit of a write off really. I’ve been up, been down, been psychotic. It all has been really really hard.

Now my personal philosophy for when the going gets tough is to tell myself to keep calm and carry on, convince myself I am fine, and generally  beat myself up for being anything less than perfect.

Now this approach is all very well, except when it isn’t very well. For example last year when I attempted to ‘keep calm and carry on’ for seven months becoming progressively worse before I sought and accepted the help I needed.

But back to this semester. It’s been bloody hard. Ask anyone who has completed assignments and sat mid terms whilst psychotic (see…I’m admitting it now…!Revelation!) But as usual I have struggled on and struggled on.

Until the day I dreaded mothers day.  Why? You ask? Mothers day should be lovely. A nice spot of family time plus the potential to be pampered. What’s not to love? I suddenly realised that I was dreading mothers day because it meant one less day to work to achieve my goals. Suddenly, I stopped. I mentally slapped myself for being so ridiculous. And I booked an appointment with my doctor to get an extension.

Today I got to see Dr. Longname. As well as a medical certificate and a new medication script (which by the way are wafers, not pills. I ask for a different medication that doesn’t make me feel like chowing down the entire pantry, and they give me wafers?! Mind. Boggling.) I had a little heart to heart with old Longname about stigma.

You see, given my extensive experience with the mental health system I am undoubtedly against stigma towards those with mental illness. Well, at least that is what I thought. Longname told me I was self stigmatizing. That if I had a physical illness I wouldn’t hesitate in asking for support. I suppose he is right. Because what I endure is mental. Because it doesn’t leave any physical trace. Because it is indeed, so stigmatized. I tend to try not to think about it. I just want to be normal, and be treated as normal.

But doesn’t anyone? Those with obvious disability generally want to be treated as any other person.

Of course, Longname agreed. But if the disability were to hamper the individuals ability to study and achieve her best, the university would have no hesitation in giving out extensions for work and other supports.

I suppose he is right. His last words to me were “Ask for help when you need it, Rachael. Don’t struggle in silence.” And that’s the core of it really. That’s MY issue. Too many times I have not wanted to worry people, or bother people. Too many times I have denied myself the help I require, and deserve.

But not this time 🙂 
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I kid…I kid! 😉

Purple People

 

“Susanna: I am a crazy girl. Seriously. 

Tony: You’ve been in a hospital?

Susanna: Yes.

Tony: Do you see purple people? My friend, he saw purple people. And so the state came and took him away. He didn’t like that. Some time went by and, and he told ’em he didn’t see purple people no more.

Susanna: He got better.

Tony: Nah, he still sees ’em”.

          Girl Interrupted

So apparently I am psychotic. My own clinical knowledge says the doctors are right. But my own intuition convinces me they are wrong. Honestly, I feel fine. This so called ‘delusion’ of mine has been going on for a good decade or so. And although it isn’t terribly pleasant at times, I’m coping fine. It doesn’t affect anyone but me. I’m functioning. I’m a good mother. I’m not socially inept (well not completely anyway ;)). I don’t feel that I have lost touch with reality. It’s not like I am running around town in a bed sheet proclaiming to be Jesus.

But that’s what they always say about crazy people. They always think they are sane.

I had an emergency meeting with my new psychiatrist; Dr. Very Long Name, and my psychologist on Monday after the revelation that I could be mad. I sighed heavily during the interview “Oh I knew I shouldn’t have told anyone about this…now you all think that I am crazy!”. “I don’t think you are crazy”, Dr. Very Long Name replied “I think you are psychotic”. Well. That’s comforting 😉

 

Interestingly they have now assigned me to this “Hospital in the Home” program. I don’t know the details, but apparently nurses will be visiting me daily. Now this is interesting because as I said before. I feel fine. I have lived with this ‘delusion’ for a very long time. Truly, I’m ok.

Yet when I wasn’t ok, when I was desperate for help I didn’t receive it. It’s a strange world.

They have got me on a new drug. An anti-psychotic. Abilify. Worst drug ever! Imagine being so tired you can barely stand up. Then imagine being so restless you can barely keep still. Then chuck a few achy joints into the mix. That is Abilify. I took it for two days then gave up. I have a toddler to look after, a thesis to write, and a goddamn life to lead. I’d had enough of that bullshit.

 

I don’t believe medication will stop this ‘delusion’. Mostly because I don’t believe I am deluded. I’m wondering if the only way to get out of this is to claim recovery. Perhaps I will have to pretend that I can’t see purple people anymore.