Amber and The Allergy Test

A few months ago I visited the immunology department of our local hospital to get have some allergy testing done. Oesinophilic Gastroentoritis is often associated with food allergies, so one of the first steps with immunology was to isolate my irritants.

The nurse told me what each prick was for as she worked. When she came to “Dog” I almost had a heart attack.

“Oh god! I hope I’m not to allergic to dogs!” I told her. “I could never get rid of my Monsieur bark-a-lot!”

“Monsiour-bark-a-lot! That’s quite a name!” She said, carefully dropping a tiny drop of what was presumably Essence of Dog Dander on to my prick.

“He lives up to it.”

Then I had to go and sit in the hallway to wait for the results.

A beautiful young woman, who was pretty much the splitting image of Isla Fisher, sat down next beside me. Suddenly she  turned to me saying “Nice arm! Been pricked?”

“How could you tell?” I joked. We both laughed and then started talking.

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“Last time I had that done I went into anaphylactic shock and was rushed down to the ER.” she told me casually.

“Holy crap!”

“Yeah…I almost died that day. They had to get the paddles out and everything” she gestured towards her chest. “They don’t prick me anymore.”

“I should think not!” I exclaimed. “That’s terrible!”

“It’s life.” she said, giving me a smile. ” I have this really rare condition where I’m allergic to everything. Like, literally, EVERYTHING. Do you have many allergies?”

“Not sure.” I told her. Well allegedly peanuts according to my bloods. Which is kind of weird as I have never had any trouble eating Snickers bars…But I can’t eat gluten or pineapple. I have this rare autoimmune disease so they want to check things out.”

“Oh! I’m a pastry chef and make loads of gluten free products for people”. she told me.

And we started to talk. She was 28, like me, with a sunny disposition, despite the serious nature of her health. She had just moved to our city from Sydney. She was engaged and hoped to have a baby when her health was more stable, as she had just found out she had ovaries. This isn’t kind of a metaphorical way of suggesting she was clucky. She literally had just found out she had ovaries. From birth she was told she would never be able to have children. A recent surgical investigation showed the pesky ovaries “hiding”. Hiding where, I’m not quite sure.  It was all very intriguing.

I told her about my year, she told me about hers. We empathised on the awkward moments we’d had running from family events and restaurants to vomit. We talked about the difficulties of having a rare and “invisible illness.” We talked about how annoying it was to feel sick the time. How it had impacted our lives and our mental health.

She told me that she had to come to the hospital every week for the next six months. It was part of some experimental drug trial. And because of her tendency for bad allergic reactions she needed to stay at the hospital for a certain period of time after the drug administration.

“Jeez..that must eat into your time!” I said. “I’m lucky if I don’t spend half a day in this hell hole every time I come in. And that’s just for an appointment”

“Well, you know, my social calendar is PACKED right now!” she joked, giving me a wry smile. “I’m sorry if I’m bothering you, I just like to talk to people. My fiancee is FIFO, I have no family in the state, I can only work when I’m well, which is like, never. Most of the friends I have I met here at the hospital. That’s a bit lame isn’t it?

“Not at all. It’s a nice change to have someone to talk to. I’m Rachael.”
“I’m Amber.” At that moment the nurse came back and called my name. As I stood up Amber said “Hey. It was nice talking to you. I really hope your health improves.” I responded with the same sentiment and then there was that awkward moment where I wondered whether I should ask for her phone number.

I’ve never asked a guy out in my life. I get nervous asking mothers at Master D’s daycare to exchange numbers so the kids can have a play date. I’m a giant wuss. So I waved her good bye and walked back into the treatment room, and instantly regretted my decision.

“Good news!” the nurse said. Rubbing off the ink on my arm. “You’re not allergic to dogs.”

“Thank God for that!”

On the way out I looked for Amber, but she was gone. We only talked for a while that day, but I  think about her every time I head to the immunology department. Despite having a chronic and life threatening illness Amber was positive, friendly, and empathetic. Unlike me, she had been sick from the moment she was born, and despite her troubles she managed to make the best she could out of life. She inspired me.

So Amber, if you are out there, I hope you are doing well. I hope the drug trial works, and I hope that you are able to have the baby you so desperately want.

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The Medication Police

Every Saturday morning I  trudge down to the local pharmacy where my Pharmacist doles out my medication for the week. If I don’t take my medication or, presumably, don’t show up, my mental health team are called. At nearly thirty years old, as a mother and PhD candidate I can’t be trusted to take my own medication. There is an interesting story about that.

When I was first released from the hospital I had a team of mental health nurses visiting daily. One of the nurses, Lynda, was a middle aged, extremely chatty woman who said “fuck” a lot. You couldn’t help but like her. After two weeks I knew everything from the miscarriages she suffered as a young mother to the details of her menopausal symptoms. Her chattiness suited me as it meant I didn’t need to talk much.

One day she asked to take a look at my medication. Obediently, I went and got The Box: a large metal container housing all of my medications, which the Hubster occasionally took it upon himself to lock if I was in a particularly dour mood.

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“Hubster. Seriously. I’m having a bad day – I’m hardly going to kill myself.”
“Yeah well. This makes me feel better about things.”
“You know if I REALLY wanted to top myself I could just go and buy a load of painkillers, right?” I tried to reason with him.
“You can’t drive at the moment.”
“Ok. Well. You know if I REALLY wanted to kill myself I wouldn’t take pills.” I tried again.
“Why not?”
“Because overdose is a particularly risky….Gah! Why are we even having this morbid conversation?! The point is, I am allowed to be sad sometimes. I am allowed to cry. It doesn’t mean I am suicidal. And I don’t need to be treated like a child.”
“Ok. But I’m still locking the box.”

So it seems I have some trust to build.

Anyway, Hubster wasn’t the only one mistrustful of my intentions. Back to The Box. Lynda was half impressed, half horrified by the contents of The Box. My seventeen or so medications where in there, neatly organised by Hubster according to dosage and coded by expiration date.

“I’ve never seen anything like this! This is…shit…this is ORGANISED!” she exclaimed, pawing through my stocks.
“Yeah…Hubster did it because of the ECT…I kept forgetting what to take.”

“You have FOUR packets of Oxycontin in here”.
“Do I? Well at least I won’t need any more in a hurry…”
“Bloody hell. You must RATTLE,” She interjected.

“I guess?”
“Drake will have to see this!”

Now Drake I had heard a lot about. He was the head pharmacist at the State Psychiatric Facility, and the nurses tended to swoon about him. “Drake is so NICE”. “Drake is a LOVELY man.” Yes. I had to meet the famous Drake.

So the next day Lynda appeared with Drake and what appeared to be his small entourage. I was a little confused as to why the head pharmacist of the state wide psychiatric institution was sitting in my living room commenting on my medication, but hey, he seemed  impressed with The Box, telling me he was going to tell his other patients to organise their medications in a similar fashion. Hubster would be chuffed.

But suddenly there was some sort of intervention.

“You know we can’t let you keep all of this in your house, Rachael.” Drake said.
“Erm. Well. I’ve paid for it so -”

“It’s too much of a risk.” Lynda joined in. The rest of the entourage nodded.

“A risk? Well. I’m not suicidal. And besides,” I said, pointing at the lock, “Hubster can always lock it if needed.”

“We just don’t feel comfortable with you having this amount of pharmaceuticals in your home. You’re a smart girl. If you wanted to get in there you could.” Lynda pointed out.

“l hardly think so…I need Hubster to get the lids off jars for me. Besides, I’m not planning on being suicidal, so I really don’t’ think it’s an issue -” It would be far easier to just buy some more rather than getting all super sleuth and picking locks, I thought. But I didn’t say that as it would be marked down as “has a plan”.

“I’m sorry. But we really think it is best if we take this all to the pharmacy. They can give you your meds on a weekly basis.” Drake said.

“Hang on a sec! You were just saying how good and organised it was, and how you were going to tell your clients to manage their meds.”

“Yes, but most people don’t have the sheer amount of medication you do. And they don’t usually have multiple packs of high schedule painkillers and boxes and boxes of sleeping pills…aside from anything this is all highly addictive stuff Rachael.”

Well you were the ones who put me on it! I felt like shouting. But I didn’t. Because that would be marked down as “being unreasonable.”

So, obediently, I went down to the local Pharmacy with Lynda and handed over all of my medication bar my weekly doses and a few PRN, to be doled out every Saturday.

“I’m proud of you Rachael.” Lynda told me as we left. “Many people feel anxious about giving up their stockpile…their “emergency stash” Do you want a PRN Lorazapam to take the edge off?”

Bang. Head. Against. Wall. It wasn’t a stockpile. It wasn’t my “emergency stash”. I wasn’t intentionally collecting the medication that was prescribed to me.  It’s not my fault that I am on seventeen different frigging medications. I am NOT suicidal. I CAN be trusted. 

I didn’t say any of that though. Because that would be marked down as being “emotional.”

So instead I said. “Yeah. Well I guess it’s for the best. Lorazapam? Why the hell not.”

So every Saturday I show up to collect my weekly supply. I can’t take too many, I can’t take too few. The medication police are surely on my case.

I know my past. I know people want to protect me. I know there is probably some “Cover Your Arse” legalities out there that prevented me from keeping the medication. I know Hubster is scared of losing me.

But I hope that I will be able to gain back the trust of others some day.

To the Nurses

This is for all the psychiatric nurses.

You really have it tough. Unlike a general nurse, your patient sees you as the enemy. You can be in physical danger around angry men much larger than yourself, and must wear a “Durress” alarm around your neck, an accessory unrequired in most occupations. You need to enforce the consumption of medication in unwilling participants, asking them to open their mouths after swallowing and if unsuccessful resort to the large needle.

Unlike a doctor, who swans in and out, you are around all day. You need to be able to deal with all colours of a patients grumpy, manic, persistent, rebellious or manipulative moods. You know a patient like the back of your hand, but you don’t have the authority to prescribe the treatment your vast experience tells you is required. You know how to be kind as well as authoratitive… A skill many dismissive psychiatrists lack.

You know when you can talk a patient down, and when you need to call Security. You know how to bandage a self inflicted wound much better than a general nurse. You have the gift of forgiveness, able to smile at the patient who screamed at you the day before. You know when to drag a patient out of bed, and when to leave them be.

To the nurses who are rarely thanked, rarely acknowledged and, thanks to the medication, rarely remembered. To the ones who get all the dirty jobs. The ones who posess a skin thick enough to protect them, yet thin enough to care. To the nurses who definetely don’t do it for the money.

To all the nurses who cared for me during my madness, and who weathered my precarious moods, self destruction and rebellion…thank you.

Thank you and I’m sorry.

Early Warning Signs

What has scared me most about this whole experience is the potential for ‘it’ to come back again. I’ve discussed this at length with many of the medical staff managing my care. At the moment I have so many people checking up on me that I’m confident someone would hear the alarm bells even if couldn’t. But what about in a year? What about in 10 years?

It was then that I realised that I need to be the one who monitors my own wellbeing. I need to be the one who hears the alarm bells. I can’t rely on other people to babysit me. I need to take responsibility for my own mental health.

But this is easier said than done. Depression, I feel, is easy enough to recognise. The lethargy, the low mood, the apathy. I know when I’m depressed. But the apathy that fuels my depression may prevent me from doing anything about it. Mania. Another problem. Mania, particularly in the early stages feels fantastic. I’m not going to go and seek help when I am manic. I may not even believe I am manic. Then what?

So when my lovely nurse from the Mother and Baby unit came for her weekly visit yesterday she was armed with papers and materials. She explained to me that the trick is to identify a mood change before it becomes a full blown depressive or manic episode. The first tool she gave me was a mood diary. She showed me how I could mark my mood every day and keep a track of my high’s and low’s. This way, if my mood started to dramatically change I would be able to see it and take action. I like graphs and charts so a mood chart appealed to me.

Next she asked me if I could identify my early warning signs. I thought for a moment then told her that I couldn’t. The memories I have of the past year are so convoluted and confused, I can’t really describe what came first. This is, in fact, the reason why I am writing this blog episodically rather than chronologically.

My nurse then pulled out a pack of flash cards and lay them out on the table. Each card had a symptom on it:“not eating”, “feeling sad or low”, “not being able to sit still”. When I saw the symptoms I was surprised at how easily I could remember if they were relevant to me or not. For about an hour we categorized the cards, moved them around, and talked about what the symptoms meant to me. Asides from being a cathartic exercise I ended up with personal symptom lists for depression, psychosis and mania. Furthermore, we were able to identify my personal early warning signs for each. My nurse left, promising to create a personalised early warning sign booklet for me over the next week.

I lost control before I was admitted to hospital, and the little control I had left was taken away from me when I was inside. But now, on the road to recovery, I choose when to eat, what to do and where to go. I take responsibility for myself. I look after myself. And now, with a few tricks up my sleeve, I feel empowered. Instead of feeling at the mercy of dangerous mood swings, I feel like I have control. But most of all… I feel like me again.