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!

9-ot

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.

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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.

Oesinophilic what?!

Is the response I generally get when I tell people about my diagnosis. So instead, I have started explaining instead that I have a Very Rare Autoimmune disease. 

Because, let’s be honest here, no one actually knows what an autoimmune disease is.

At least I didn’t. Until I discovered I have one. Basically an autoimmune disease occurs when the body’s immune system gets confused and starts attacking itself. Body fail. 

My particular disease results in my oesinophils (little soldier white blood cells that usually target infection or allergic reactions) having a partay in my gut, and storming my blood. Thinking that there is need for warfare, more and more troops are called in, and my gastrointestinal tissues are seen as the enemy and attacked. Awkward!

autoimunetough

The result is severe abdominal pain, vomiting, diarrhoea, weight loss (the one symptom I didn’t get. Typical!) and other gastrointestinal symptoms unmentionable in polite company. Kind of like your average 24 hour ‘gastro’ attack. Aside from the fact it doesn’t end after 24 hours. 

What little research there is indicates that the “gold standard” of  treatment is to use steroids to immune suppress, or stop those little soldier cells in their tracks. But, as I found out the hard way, Prednisolone + Bipolar = Complete Disaster. The second line of treatment was to avoid all potential food allergens by sticking to an (extremely annoying) elimination diet, eliminating gluten, seafood, nuts, soy, dairy and eggs. While this has lessened my symptoms to a degree my eosinophil blood count is still four times the normal limit. Plus I’m kind of driving myself mad trying to find food to eat that is allergen free. 

So this is where I’m at. Trying to get my body to work, and wondering what will happen next. My immunologist has indicated more tests and biopsies and potentially starting on a regime of “a different type of steroid that won’t send me mad”. 

That would be a first 😉