This Lupus Life

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

PET and Progress

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I must confess I have taken a rather large emotional blow over the last week and I have struggled to compile a review of the next stage in my medical sagas. I won’t distract or bore you with the details, only to say that it is inconsequential and I hope it won’t have too much impact on my recounts’ fluidity. Suffice it to say I am left feeling flat and yet prone to description, which apparently I do.

A few days following the first meeting of The New Team (TNT) I received 3 letters in the mail. The first was directing me to a MRI at Fremantle Hospital in a few days, the second was directing me to a PET scan at Sir Charles Gairdner Hospital within the week and the third was another appointment at the Neuroclinic in a fortnight. With the skills I possess I slept through my MRI. It took twice as long as usual this time as they were looking further down my spine and into my brain apparently than they had before. Again they played Triple J so I wasn’t bothered so much in the small dozy time between sleeping and awake.

It was harder to sleep in the PET scan itself but I did nap in the injection phase. From what I pieced together a PET scan is a test you need to be quite conscious of, as a patient. They sit you in a dark room in a comfortable reclining chair with a Cannula in one of your arms or hands. After the nurse leaves the room (a blind is drawn so you’re lone) they inject a radio-active fluid into your body and then leave you to process it passively, or inactively, for an hour or so. You have to fast since it attaches itself to sugar or energy to activity or something. You can’t listen to music or read or watch TV as even that is too much activity in your brain. It’s a pretty depressing place to sit for an hour, so you’d want to hope you can sleep. I couldn’t, for once! I doubt you could even think if you thought about a severe emotional issue like a recent death or heart break or fight. But why would you?

When they, and you, are ready you have to go to toilet, since the scan goes for the same time and, well you’re full of fluid. In the bathroom there are signs everywhere telling you to sit down regardless of gender  because of your radioactive emissions. This is where you start to daydream about your pee eating through the bowl of the toilet and into the floor below in a comical Hollywood way. At the same moment you are panicking and thinking “What did they put in me?!” and looking at the veins in your wrist to see if there is a glow or any greenish tinge. There isn’t. You wipe, wash your hands and wander back to the scan room smiling about the fun thoughts hospitals bring about. The PET itself was non-eventful, much like an irritable MRI. I did have a great breakfast afterwards at Boucla in Subiaco. My cousin loves their coffee, and I have to say, their lunches are pretty incredible too.

Connor didn’t think my story about radioactive pee was funny be Lady Leo did and Lord Leo shook his head in what I think was a knowing way. Very exciting about this visit with TNT was the Big News that I was making progress!! I told them it was all the films I was watching and all the sewing that was healing me. Connor suggested it was likely the Prenisolone.

My wonderful father asked, “Great! Does this mean she just stay on these then?”

Almost everyone in the room exclaimed hastily “NO!” Lord Leo just shook his head.

Connor continued by explaining that a long-term course of steroids isn’t advisable and used PC-correct medical terminology. I amended and told Dad I would refuse to take them and after a few months would just work on my headstands until I stroked out permanently. I think he began to understand then. Lady Leo and Connor took great pains over the next half hour to explain what they believed to be occuring to me and I will now attempt to pass on to you.

I had a migraine.

The blood vessels in my brain were inflamed due to the migraine and this create neural tensions and pressures. The area with the largest evidence of inflammation was in the same vicinity as my optic nerve, hence my loss of vision. The steroids should not have worked as they did, however, they have dramatically aided in reducing the inflammation without creating any other visible related symptoms. This is not directly nor indirectly related to Lupus, however, I will continue to be treated for this by the Neurology Clinic and TNT, given that I have Neurology and Immunology concerns and they are Neurologists and Immunologists. I will be treated for the remainder of my life with a migraine suppressant called Topiramate, which will manage the condition and they growths should not appear again.

So. There you have it. After all this time. I had migraines. I almost died, because I was having migraines. I was in a car accident, lost part of my sight, my speech, not tot mention I have eaten the inside of my mouth to shreds countless times, made a fool of myself at AutoOne, and missed out on meeting one of my favourite authors in Adelaide because of  migraines. But I am a copper coffee cup  half full kind girl and I could have cried at how simple this diagnosis was, after how many terrible diagnoses there are in the world!. Happy day and what a thrilling conclusion!

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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 “PET and Progress

  1. Pingback: The Fear | Nitya Nata

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