Going Up

oing up

For the chronically ill there are a lot of visits to the hospital. Not just admissions, there are also visits to specialists in hospital outpatient clinics. I am very familiar with the Level 6 clinic at Auckland Hospital.  I’ve been going there for years.  Gastroenterology, General Surgery and Immunology all run their clinics from the same place, the pathology rooms are just down the hall. The neurology clinic happens just upstairs. On a regular rota I have been seeing all of them. And today, I went for what I hope will be the last time. I know I can’t expect it will be forever, but why not hope?  So many of my wishes have come true lately, so many lucky things have been happening for me.

My immunologist is a quiet-spoken man. I’ve written about him before, he is a superhero, that kind of doctor who restores your faith in the medical system. After he invited me into his office he said in his measured voice “What’s been happening?”

“LIFE!” I enthused, “I’ve been busy living life!” His lips twisted in that lets-be-scientific way and he asked a different question, followed by some more. He looked at my file, shook his head and smiled. We discussed how strange (but welcome!) my remission is. He used a word not many doctors use: “miraculous”. And he used it without even a hint of tongue in cheek. He explained that they had searched high and low for an objective test that could unequivocally demonstrate the difference in my condition from before, to now. They just can’t explain it. I observed his wonder at my remission with mild surprise. I forget sometimes, what a different person I must seem to him, this new life fills me with joy, but I think the shock of the change is fading for me. Today, I’m wearing bright clothes, coordinating accessories and my face is fully made up. Even my nails are done, thanks to my new side job. The Rachel he met a bit more than a year ago sat slumped in the same chair, colourless, exhausted and nearly defeated.

“You were so symptomatic…” he reflected. “And look at you now!”

He agreed that I don’t need to attend clinic anymore. And that means no more Auckland City Hospital!!! I’ve never been so happy to farewell someone.

“Come back if you need us again, you may need to have another course every few years, but hopefully not,” he smiled.  Then he stood and said “…well then- give me a hug!”.  We hugged, patient and doctor. We hugged in that slightly awkward but full of feeling way, and I hoped that flowing through my arms he felt my gratitude. I stumbled over my words, something about wishing there was a way I could adequately…
“Just keep doing your good work” he said.

I grinned at him, waved, and walked out of that clinic.  Past all the chairs where people less lucky than me sat, round shouldered, weighed down by their health burdens. Past reception, where my file would be handled for the last time. Through the foyer, past the best barista in Auckland, who has served me more coffees while I’ve been in my hospital nightie than in my street clothes.

By the time I reached the carpark lifts, my heart was already soaring.
The elevator doors opened “…going up?” asked the man in the lift.

“I believe I am” I smiled, stepping inside.

“Inappropriate Happiness”

Today was my first steroid infusion.  I don’t mind admitting that I was very nervous.  I seem to have a talent for experiencing side effects when they are on offer.  My first two drugs, fludrocortisone and midodrine both had to be stopped because the side effects were dangerous. Fludro dangerously rose my intra-ocular eye pressure.  If my optometrist hadn’t noticed the rising numbers, I could have gone blind. The midodrine (my most favourite medication of all time) caused urinary retention and hypertension.  Again, I had to stop.

As always, I had done my homework before today’s infusion.  I knew the common side effects and the less common.  I also had a moment of panic when the ward immunologist explained during her disclaimer, “…and I have to tell you, it’s rarely ever heard of, but some people do have serious allergic reactions to high dose steroids”.  See? Don’t tell a girl with a rare diagnosis that things ‘rarely’ ever happen.  It’s like putting a siren strobe light on my head, pointing at me and yelling at the universe
“That rare-side-effect-magnet-girl is HERE!  Come stuff her up some more!”.

Of course, in the interest of self protection, I always do consider the worst-case-scenario when I am embarking on a new medication.  I scan the Medsafe sheet and think ‘Can I handle that?’  If I am prepared to handle that in exchange for the benefits the drug might bring, then it’s worth the risk.

So this was the list I examined last night.  It’s from the Mayo website:

Add a little bit of body text(3)(yes, I know, the highlighting slipped on the second group of my graphic, but tonight, I don’t care about getting it just so!  Handle the jandal design minded peeps, it’s really, okay).

I scanned the list and realised that of all those side effects, most are my current symptoms anyway (highlighted in yellow). Nothing new there.  The ones highlighted  in blue are not usual for me, so would be easy to spot if they turned up.  I decided it was worth the risks.  But there were other sites I visited, too.  Ones like this one, that listed side effects I felt sure were too nice for me to ever have.  Like euphoria (apparently this ranks at #36 in all on online discussions about IV steroids).  Euphoria is a sense of ‘misplaced wellbeing’.  Or as one of the sites describes it: ‘inappropriate happiness’!  When could happiness ever be inappropriate?  Well maybe at a funeral. Or job interview.  Or in the wee small hours.

I arrived at the Immunology Daystay and we got underway.  The Immunologist who saw me was wearing killer heels and wrote with a Mont Blanc.  It was a brilliant start. I wanted to get a photo but I thought she might think me weird.  She was that sort of doctor who talks to you without any hint of superiority, too.  Taste and tact.  Smart and sensible and kind. I liked her right away. She asked me questions and explained the process.  I signed the form.  They stuck the needle in my hand, taped it down and away we went.  It’s the fastest infusion I have ever had; it only took a morning.

This is what I noticed:
First, a rising metallic taste in my mouth.  It even made my water taste brackish.  The kind lady next to met gave me a mint.  She was nice.  We talked about books we loved (she was reading Barbara Kingsolver’s Flight Behaviour and I am in the midst of Karen Joy Fowler’s We Are All Completely Beside Ourselves).  I began to feel woozier than normal and really tired.  I noticed when I got up that my legs were weaker.

Back at home, I propped myself up in the armchair and drank a cup of bitter tea.  Then the hunger hit.  I was a ravenous creature! Thankfully, an entire pomelo was on the bench (pomelo are giant fruit from my childhood in the tropics, kind of a cross between a huge grapefruit and a mandarin).  I ate a whole one.  What? They’re only the size of a human head! And then (shhhh) a few other things besides! Aunty Dee’s tua tua fritters with wasabi mayonnaise,  a salted caramel and date cupcake.  There goes my liquid diet!  BAM. Delicious.  By late afternoon I felt really odd.  Just wrong, weak and dizzy, but different to my normal weak and dizzy.  Who knew that weak and dizzy had so many different presentations? I lay and marvelled about that.  All the different dizzies.  I was sleepy, but I didn’t couldn’t stay asleep.  I got ready for bed, hoping sleep would claim me for the night.`But there in the back of my head, there was a shiny little secret twinkling.  I pulled it closer so I could see what it was.

Every little thing is gonna be alright.

‘That’s odd.  So not true!’   I thought.  ‘But it is true, come see’ was the thought that came back at me.  I closed my eyes and this is what I saw…

Earth, from space, like you see in the movies, all that blue and green with wispy scuds of clouds.  Breathtaking.  But as I looked I saw that in some places there were burnt patches.  I knew; those patches were the horror scenes we see on the news, we read about in books, we worry about as we hold our babies close. And then, from the back of my tiny brain, somewhere down there in New Zealand, that twinkly little thought rose up and burst through the atmosphere.  I saw it climbing up.  Then millions of starbursts of thoughts, from everyone else too, everywhere else, cutting vertical lines upward through the atmosphere across the entire planet.  Then they bent and arced around the earth, forming a web of light that shone down over everything, even the burnt places.  And there was regeneration.  But new burnt patches appeared, pinpricks and vast stretches.  And the arcs of light kept shining. And the world kept healing itself.  One patch at a time.  Links of light shining down in the dark spaces.

I opened my eyes then.  Looked around my room and thought:  
‘There is more good than bad’. And that little epiphany made me happy.  And the happiness just sort of filled me up.  Just like that.  I haven’t felt happy like that for a long long time.  I’ve felt content, but not so completely happy.  Better than being able to hike up to a good view, even.  Better than being deliriously tipsy in the kitchen, lost in the sway of your man’s arms and a good song.  Better than floating on your back in a sapphire sea. A better buzz than most of life’s joys.  Better than baby feet! So nice to feel that every little thing is going to be alright.  So good to feel it in my bones.

And then it occurred to me.  HAPPY DAYS! Far out, Rachel.  I’m experiencing euphoria!  For once in my life, a nice side effect!  Huzzah!

And then I chatted with my dear friend, Nettie, and I rocked around the internet marvelling at it’s extraordinary wonders.  I felt a growing sense of Eudaimonia (there’s a word to make you happy); human flourishing.  Another thought twinkled away: this illness, this experience, it’s a process.  It’s not the opposite of good, it’s just a process, like any other biological process.  I can flourish from it just as well, or maybe more, even, than I could have if I were well.  And I am, I will.  I’m a quick study. And that thought made me even happier.

The Bobby D came into the bedroom to go to sleep then, it was already late and he was concerned.  I don’t do well with poor sleep, so he suggested with that lovely man-kindness, that I call it a night.  But you know what?  I JUST COULDN’T.  I am happy!!!  I want to squeeze every last drop of this euphoria out.  I told him I needed to write (that look lasered over at me) and that I would come to bed as soon as I possibly could.  I repaired to the living room and lay on our lovely long velvet sofa.  It makes me happy too. The feeling of my feet brushing across the nap, smooth, rough, smooth.  Life.

And I wrote this down.  Well, in fits and starts.  I’m a bit distractable tonight!  Flitting here there and everywhere in my laptop world! Loving all of the world, the light and the dark. The shiny thoughts that are gonna make everything all right. It’s all probably a bit wuwu.  I hope it won’t be so nutty I will have to delete it tomorrow.  Because I want to capture this feeling.  Can you feel this joy?  It’s so nice. It’s like one of those big round papasan chairs but instead of a cushion there is lots of sunshiney light, and I am coccooned in it; euphoric!

Goodness!  it is nearly 2am already.  How did that happen?

May euphoria find you some time in your lifetime too.  And may it not be via drugs.
It’s wow.

EUPHORIA

 

What would you do?

I’ve been doing that thing patients do.

Waiting.

I’ve been doing it impatiently, because I’m like that. I goes like this. I’ll be going through my day and the thought occurs, as it regularly does:

How can I keep going like this?

Which always leads to the next thought…

Am I doing enough about it?

What would you do_(1)Well, I’ve been fighting for years to find someone who will investigate the cause of my Dysautonomia and consider treatment.  Last year, I found two great immunologists. Which brings me to the waiting part.  It’s like a circle of impotent wishing.  Drives me a bit bonkers, but that is the price you pay for not paying a price when it comes to medical care. We have this free medical system here and I am so grateful for it (because by the time I got around to organising Private Health Insurance, I was already deemed ‘uninsurable’).  If I’d been living somewhere else (like the US), my situation would be dire.

So I’ve been waiting (albeit impatiently!) for the immunologists to get back to me about the possibility of IVIG.  At the end of last year I had the tests they were hoping would offer a compelling base line. But the tests didn’t provide the strong results we hoped for.  It is one of the most incredibly frustrating features of Dysautonomia, that our tests don’t always catch our bodies behaving the way they do.

My tilt table test was ‘unremarkable’. Instead of my trademark drop in blood pressure and a heart rate that drops through the floor, my blood pressure was high.  The entire duration of the test was a painful torture for me, due to the pain in my pelvis and hip when I am weight bearing. I suspect the pain brought my blood pressure up, buoying my system into a false negative TTT.  But you don’t get a ‘do-over’, and even if I could, the pain issues I am having are still being explored, we know it isn’t structural; it is possibly neuropathic.  Another needle in the haystack.  Either way, it’s not going away overnight. By contrast, the gastric emptying study showed “an abnormal pattern of gastric emptying and small bowel transit compatible with (her) known Dysautonomia”.

And I am only guessing… but I think it is clear that more significant results would have made for a different outcome.  Fortunately, and sometimes unfortunately, the medical system functions on objective data. That’s just the nature of the science.

I had a phone call last night from one of the Immunology outpatient doctors at Auckland Hospital. He was a lovely person who was very thorough with all the details.  He outlined the plan for me. I will start a six month course of methylprednisolone pulse infusions in February.  If I respond well to the steroids, this will give us a better indication of whether or not I have an autoimmune aetiology.  That just means that we will try a ‘suck it and see’ approach.  If this treatment works for me, it points towards my problems having an autoimmune cause.  It has been tricky to establish this point because the tests I have had done have not shown auto-antibodies for the usual culprits.  The main one, the Acetylcholine Receptor antibody, is negative.  According to Dr Vernino, 50% of his patients with presentations similar to mine, are sero-negative.  That’s like one in two. The flip of a coin. That’s why I haven’t been able to just sit with a doctor response of ‘it’s not auto-immune’.  I guess I need proof that it is not, just as much as proof that it is, before I can put that theory to bed.

I am also desperately attached to the idea that my problems might be immune mediated.  I prefer this possibility to many, despite the fact that treatment is not without risks.  I prefer it because it actually has a treatment pathway.  That’s a hope-inducing fact. Apart from my pacemaker, I’ve been languishing in the progressive no-mans-land of Dysautonomia, without treatment, for five years.  My symptoms are ‘managed’ (ha!) with a range of medications.  But none of that is addressing the elusive cause.

If something was wrong with you, if it changed your life and had an impact on your family… would you be able to sit back and accept the line; ‘We don’t know the cause/it is too hard to find the cause/ just accept that you have this thing we don’t understand’?  Well, I can’t. I’d rather go through the frustrations and exhaustion of searching for answers than just accept the ‘We don’t know’ line.

And maybe that is a defect in my personality. Or maybe it is a strength.  Either way, it doesn’t feel like a choice to me. I welcome the opportunity to try methylprednisolone.  It is the first proactive thing that has happened for my condition in five years. And if it doesn’t work?  I really don’t know what is next. If anything.

Maybe that is when I have to look at accepting some things. And that makes me want to drop to the floor in a full tanty. So I’m not going to think about that unless I have to.  Is it wrong to search and search for a cause in the hope of arresting the nerve damage?  I’ve already seen the ways this has affected my body.  I don’t need an imagination, or the facts, to see where it is headed.  If I can find something that will halt the slide, I feel like I should throw everything into that search.  Isn’t it what most women would do?  It’s not just about fixing this for me, it is about finding the best way through the maze for me and for all the people in my world.  It’s not self-indulgent to think they need me.  They do.

What would you do?