This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Back to reality

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I slept better after Gallowe left Sunday night. This is due to the earlier visit I’d had from the weekend neurology team when I had informed them of the extent to which my intravenous (IV) methylprednisolone (immunosuppressant steroid treatment) was interrupting my energy and circadian rhythms.

To recap, I had a seizure during a university tutorial Wednesday afternoon of last week. The ambulance rushed me over the road to Fiona Stanley Hospital and I was admitted straight away. A subsequent MRI revealed a large lesion caused to inflammation from my Systemic Lupus Erythematosus (SLE or Lupus). The neurology team worked hard in coordination with the immunology team of the hospital, as well as communicating with my neuroimmunology team at Royal Perth Hospital (RPH). By Friday afternoon I had been tested for infections through the normal avenues, as well as having a lumbar puncture to ascertain specific infections that may cause neurological troubles. When I was clear for that I was hooked up to my IV contraption, moved to a private room and dosed up on the immunosuppressant steroid methylprednisolone. It is the methyl version because it is liquidated so can be injected directly into the bloodstream and so work faster. The dose was 100 mg. I was in a private room because my immune system was being wiped out. Obliterated. Inflammation is the result, in part, of an overactive immune system, so by killing my immune responses the body has the best chance of reducing any and all inflammation in the body. Given the size of the lesion in my brain the most expedient route was required. An alternative could be fatal.

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Sunday night I lovingly took a Temazepam at bedtime. I had my cup of peppermint tea, rubbed lavender on my temples and put my meditation music on a timer. Thankfully I slept through to my 4am neurological observations. 6.5 hours of sleep!! My nurse snuck in early at 10 am to do my final round of IV fluids. As I was ruing the metallic/bitter tang in my mouth the week neurology team dropped by.

An MRI wouldn’t show anything for a small amount of time still, so there was no use in me staying in hospital.

As I would be continuing on a relatively high dose of prednisolone orally for some time so there was no real concern about my immune system. I am compromised. I will continue to be so.

I have not had any residual effects of the seizure. I know what happened, they know too. The danger zone was past.

There was an immediate plan for the next week and the ongoing care and management has been confirmed as being managed by the team at RPH, however if there are any further emergencies I also have a team who is familiar with the case at Fiona Stanley from now one. The Third Team.

So now I was ready for discharge. My good friends Mamy came to visit mid afternoon and stuck around with me to take me home. Bow was at university so I didn’t think the timing of a lift from him was viable. I was home in my own room by dinner time, prepared by aforementioned housemate. It felt as though I had been away for a very long time. I unpacked my belongings, organised my medications and prepared myself for bed. The comfort of being home alone in my own bed that night was enough to prepare me for a deep sleep, but I still needed the Temazepam.

What a relief it is to be home!

Home. Where the body can #rest, the mind can be #calm and the #heart is happiest. There is nothing more to say.

A post shared by Jessie Frost (@thislupuslife) on

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

One thought on “Back to reality

  1. glad you are home and resting. Continue to feel better!

    Like

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