M R I don’t know

I had yet another MRI today. No results yet, of course.

Not really feeling like blogging today. It’s been a pretty high-intensity week.

I’m just going to veg out for the day.

Normal brain – obviously not mine

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Want

I used to have a list of wants that were pretty unreasonable and also pretty normal…

  • I want to be prettier.
  • I want to be taller.
  • I want to have a nicer car.
  • I want to have a better job.
  • I want to win the lotto (despite never buying a ticket).

You get the idea.

Now a days my list of demands looks more like this…

  • I want to be treated like a person.
  • I want to be told what is happening to my body.
  • I want what is happening not to be happening to my body.
  • I want to not be thinking of death or permanent incapacitation all the time.
  • I want to be able to pay my bills.
  • I don’t want to be taking all these medications.
  • I don’t want to have to choose between buying a life-saving medication or paying the electricity bill.
  • I want to be capable of working.
  • I want to be capable of playing the keyboard or even a computer game for fun.
  • I want to be capable of walking for more than 50 metres without needing to take a break.
  • I want to be capable of cleaning my own house.
  • I want to be able to buy something nice for myself…even something little.
  • I want to finish this blog post without crying.
  • I want to get through a day without crying.

I could go on but I won’t. I can’t even begin to process how I feel about all of this.

…I still want to win the lotto despite never buying a ticket.

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Not what I wanted to hear

This week I was in hospital for torticollis. Last week I was in hospital for a worsening of my stroke symptoms. Today I attended an outpatient rehab clinic. During my clinic appointment I discussed my recent presentations to the emergency department with the doctor. A flurry of activity began.

I was sent for a range of blood tests where they seemed to require half the blood in my body. Actually, I lost count of the vials they took but I do know that my veins sputtered out just as we got to the last one.

I also have to have an MRI to determine just what damage happened a week ago. Not IF there was further damage. When I left ED after that visit a week ago, I was told by the doctor (one who’d never treated me) that I might have had a mini-stroke on top of my real-deal stroke or it might have just been a bad day (i.e. fatigue at peak levels). Today there seemed to be no question in the mind of the doctor who was the one who treated me in rehab in the weeks following my stroke.

I’m freaking out. I don’t want this. I want to get better. I want to be “normal” again or as close as I can get to “normal”.

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Torticollis

Too much pain to blog today.

Torticollis is super-painful and I have been drugged out of my gourd.

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Frequent flyer

At 2 o’clock this morning I called the ambulance and headed back into hospital. I have had three visits to the emergency department within the last two months and each time I have ended up in the same cubicle. If only I could collect frequent flyer miles for this!

At about 10 o’clock last night my neck had started to seize up and I was in excruciating pain. At some point this morning I was diagnosed with torticollis. It’s a condition which affects the neck and causes it to look into one position, turned extremely to one side.

I have been on a cocktail of painkillers all day. (Morphine, oxycodone, diazepam, paracetamol.) My lucid moments have been few and far between. This is one. I’m about to take more painkillers so this is my tiny blog window.

That’s enough for today. I’m blocking this on my phone using voice to text. I apologise for any errors. I can’t even see clearly to proof read. Let’s hope tomorrow is better.

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Feeeelings

Today was a mixed bag. I went to bed last night with nausea. My system is so out of whack since the stroke that nothing makes sense and feelings that I should comprehend now confuse me. For example, I have discovered that I don’t feel hunger the same way as I used to. These days “hunger” feels like nausea. So feeling nauseous might be actual nausea or it could be hunger. Last night’s bout came after eating dinner so I ruled out hunger and treated myself with antacid and an early night.

This morning I woke with a very unhappy tummy. I stayed home all day despite plans to have lunch with my in-laws as they return to New Zealand tomorrow. I was so disappointed we had to cancel that but I would have been more unhappy had I gone out. I rested all day and my symptoms very slowly improved to the point we could go to Mass.

I have not regained enough function or stamina with my arm/fingers to play a full Mass so Sean and I shared the load. As one played, the other sang. It was real teamwork. We supported each other.

Then the most incredible thing happened… Snugglepot sang everything!!! She’s not yet 4 but she sang every Mass part – the right words, mostly the right notes and time and all with great with gusto! I was so proud.

I’m glad today is drawing to a close. I’ve really had enough and need to rest but I am glad that it finished on such a high. I’m sure every mother says this but my daughter is amazing. I love her so much.

 

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Leitourgia

Today, Sean and I attended a liturgy workshop. It was wonderful. I’ve been attending liturgy workshops for the better part of the last 10 or 15 years and I always enjoy them. This was Sean’s first one. As wonderful as it was, my favourite part of the day was sharing the experience with him.

The theme of the day was “Finding the Extraordinary in the Ordinary”. We explored beautiful music for Ordinary Time. It was a day spent with other musicians, liturgists and various people all committed to good liturgy.

On a personal note, while I fully expected to enjoy the day I also anticipated that I would find it draining given my condition. There were definitely parts that were more draining than others (a long walk to the morning tea location, for example) but I surprised myself by lasting the distance. I got to see old friends and make new ones and I got to learn a few new hymns.

I’ve come away from the day feeling physically tired but mentally energised for the work that we can all do to enliven the liturgies in our various parishes. It’s a glorious feeling.

“Liturgy” comes from the Greek “leitourgia” which essentially means “the work of the people” or “public service”. Liturgy is not the bastion of the church musician or even the priest. It is for all of us to be involved and contribute. When we are all part of the same body we need to all do our part, however large of small that might be. Today I got a fantastic sense of how powerful it can be when we all strive together to achieve the sublime.

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