“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

 

A Medical Menagerie

 

This may be of interest to you if you also have Dysautonomia, Pandysautonomia or Seronegative Autoimmune Autonomic Ganglionopathy, or if you know someone who does.  If neither of those apply, please don’t feel obliged to read through.
I record below all of my medical weirdnesses because I know that people will find recognition here. I took a lot of comfort from learning that there were others like me when I first heard my diagnosis.  I have recorded all my symptoms because sometimes, something small can be a clue.  I am looking for answers and you might be too.

nb_-i-keep-this-list-here-for-others-looking-into-their-own-condition-i-am-now-well-but-what-you-see-below-is-how-things-were-for-me-before-i-went-into-remission

 

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Symptoms From Top to Toe:

Screen Shot 2014-05-26 at 4.32.54 pm‘Cognitive Fog’; memory issues, variable ability to concentrate, dizziness.
 These challenge my very identity.  I was smart and now thinking is much harder for me. Sometimes I sound like I’ve lost my marbles, my words get jumbled and my memory scrambled.  It’s distressing.  If I sound weird when I talk to you, it’s not that I am stupid.  I am just struggling.

Screen Shot 2014-05-26 at 4.32.54 pmI have trouble with vision sometimes, my eyes go into focal spasm.  My pupils are not always equal in size and sometimes they don’t adjust to the light properly.  My eyes are often dry.  Other times they stream and people think I am crying.  But it’s just my Dysautonomia (as moved as I am by whatever it was you just said)!

Screen Shot 2014-05-26 at 4.32.54 pmDizziness when I have a postural change has been my reality since I was eight. Sometimes I am dizzy even lying in bed and it feels like someone is slowly tilting my bed backwards in a full circle. It feels a bit like being in a raft on the ocean and I feel like I am going to fall off. Or I have a kind of up-and-down dizziness when I am just standing (like I’m bouncing internally), or presyncope when I bend over, or stand from squatting. My dizziness makes me feel unsteady on my feet and I bang into walls and doorframes. I always have to steady myself against something if I have to stand. I use a ‘shooting stick’ cane that has a seat so that if I need to sit quickly, I can. I can also use it to prop myself up.  Descending stairs is terrifying. Dizziness is never something you get used to. You learn to breathe through it, but your body always feels stressed during a dizzy episode.

Screen Shot 2014-05-26 at 4.32.54 pmThe inside of my mouth feels like after you’ve taken a big mouthful of hot soup.  That burnt tongue feeling? It is sometimes tender, dry and my gums are red and sore.

Screen Shot 2014-05-26 at 4.32.54 pmHeart issues are part of my scenery, managed mostly by my wonderful pacemaker.  I don’t take cardiac medicines anymore.  My heart rate ranges from the early thirties to the mid two hundreds. If my heart rate drops rapidly, my pacemaker kicks in.  I have had thousands of rate drop episodes since my pacemaker was inserted. I am grateful for it every day. My blood pressure can be very low, or very high, or somewhere in between.

Screen Shot 2014-05-26 at 4.32.54 pmMy stomach, digestive tract and bowel can miss important nerve messages that make them work.  This can result in a ‘pseudo obstruction’.  First, I get ‘post prandial bloating’; my tummy distends like a ten-month pregnancy.  Then, all tummy services are suspended  (so much for never having to be pregnant again)!  These days I wear forgiving clothes and I frequently get asked if I am expecting. When it is extremely bad, I make the trudge back in to hospital. It’s hideous; but my new normal is a bowel that doesn’t work without extreme inducement. I take ten various doses of laxative a day and also self administer enemas.  I hate this symptom most of all.

Screen Shot 2014-05-26 at 4.32.54 pmI am nauseous on and off all day and especially at night.  This is a side-effect of the medications which  produce peristalsis (intestinal squeezing).

Screen Shot 2014-05-26 at 4.32.54 pmMy bladder either retains urine and have to self-catheterise, or I am incontinent.  I have detrusor dysfunction, so emptying my bladder fully is tricky. Sometimes for brief and lovely periods, the pendulum passes through the middle of the arc and my bladder behaves like it used to.

Screen Shot 2014-05-26 at 4.32.54 pmMy body doesn’t regulate temperature properly.  Some parts of my body can’t sweat anymore, so other parts of my body overcompensate.  I struggle greatly with heat.  I don’t know how to dress for the conditions because my experience of them is not accurate.  In the past, I often over-dressed or under-dressed my children.  Now they are old enough to let me know if they need thermals and a jacket.  For me, it is always layers so I can try to manually adjust things from the outside in.

Screen Shot 2014-05-26 at 4.32.54 pmI get fasiculations in my muscles, in random places all over my body, sometimes these go on for a long time, other times it is just for minutes.  Sometimes, they are not there at all.

Screen Shot 2014-05-26 at 4.32.54 pmMy leg muscles are weak, so standing up from a seated position is hard.  I struggle going up and down stairs or uphill.  My left leg often burns.  I’ve been told this is nerve pain.  Sometimes I have a strange gait, it is tricky at these times to lift my feet properly.

Screen Shot 2014-05-26 at 4.32.54 pmI have pins and needles and burning sensations in my feet and hands, known as peripheral neuropathy.  We found an excellent medication for this, but now I only take it when it is extreme because the medication made my brain fuzzier.

Screen Shot 2014-05-26 at 4.32.54 pmI live with fatigue. It stands to reason that my body is tired.

 

Medications and Treatment (pre-Immune Suppression)

The general approach with Dysautonomias, is to treat the symptoms. So for everything you see above, there is something I take or do to try and help it.

 

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  1. I take Mestinon, Domperidone and Cyclizine 4x day.
  2. I take Solificenate Succinate, Gabapentin and (a list too long to be bothered recording) of laxatives on an as-needs basis.
  3. I use intermittent self-catheterisation and enemas as necessary.
  4. I also have, and highly rate, osteopathy (thank you Glyn, you are a genius!)
  5. I have iron infusions when my iron gets too low from malabsorption (these are also genius).
  6. I am currently seeing some immunologists who think it is probable that I have sero-negative Auto-immune Autonomic Ganglionopathy.  Pulse IV steroids point to an auto-immune aetiology, so moving forward I may trial other immune modulation therapies.

I rely on my husband, my kids and my friends for help, encouragement and support.  I don’t like to ask, I don’t like to receive, but I am learning how.

Still with me?  You are amazing!  Thanks for sticking around!