This Lupus Life

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

The truth revealed

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I have been busily sitting in my bed in my ward, waiting for conversations and confirmations.

I came into Fiona Stanley Hospital on Wednesday 5 August following what appeared to be another instance of a Partial Focal Seizure. These occurrences are a result of Cerebral Vasculitis, which in turn I have picked up as a token contribution from my Systemic Lupus Erythematosus (SLE or Lupus).

Wednesday was a big mess of the seizure, and what was to happen after it. I was barely coherent and extremely lethargic. It is all a bit of a blur to me honestly. One of my classmates (I was in class during the whole incident) got a hold of my housemate (Bow) and boyfriend (Gallowe) Around 10pm I was moved from the Emergency Department (ED) up to the Acute Medical Unit (AMU). This is a place of limbo for people that need to be monitored further from the ED, not quite okay to leave the hospital but not quite out of harm’s way to safely leave.

Guess where I am. #seizure #stroke #cerebralvasculitis #vasculitis #SystemicLupusErythematosus #sle #Lupus #neurology

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Thursday was a tedious waiting game. We knew I had to have an MRI and possibly a CT scan, but we did not know when it would be. After the MRI I could leave. My folks arrived at noon and it was much nicer when they were with me. The gentleman in the bed next to me had difficulty with fevers and his lungs. He sounded to be in a lot of pain and feeling much discomfort. I felt for him, but it was hard to engage much in care of others when I was so tuned in to every person that neared my door in case they were there to take me for my scans.

By Thursday evening I gently had to suggest my parents go home for dinner. I told them to walk their dogs, eat with Bow, have a rest, bring me some uni books to read later in the night. They did, and so I felt confident to contact my lecturers to advise of my state, confirming my commitment to study and request for small extensions on current assessments. Very simply I was told to stop worrying about university and absolutely not touch my textbooks until I was well. My assessments would be made available when I was better. I fell asleep at 9:30, in spite of the terribly unhealthy heart and set of lungs in the bed beside me. Only I was woken at 11:30pm and relocated to a new ward in a completely different part of the hospital. Sleep took me swiftly.

Friday morning I awoke to silence. There was no sound on the ward. It was eerie. Eventually a nurse joined me (it was 6am).

Where am I?

Ward 7. Top Floor.

What is this ward for?

Oncology (cancer) and Haematology (blood diseases)

I knew I didn’t have cancer. I also knew cancer wards always had the best views. It made sense I would be moved to either neurology or blood so I understood, in a confused way, why I was here. I just didn’t know what would happen next. After breakfast I had little time to dash off to the toilet before my ‘ride’ was at the door to take me to the MRI. I sent Mum a message to let her know I was going before taking off in the comfortable new wheelchair to Ground floor and my head scan. By the time I had returned she was by my bed with clean clothes and the news Humphry (from my first visit to Fremantle Hospital) was the registrar on this floor and he was pleased to know I was here, though of course sad, and he’d visit me later on. I raced to the shower, him being one of the nicest doctors I can recall. I wanted to look okay for an acquaintance. After my shower I was swept off for another specialist appointment, this time Ophthamology.

Ophthamology is a specialised field related to vision, most particularly it concerns the orbital region surrounding the eyes, as well as the deeper eye health. Optometrists focus more on the vision and superficial eye health. Lately there has been a slight amount of merging as the technology has improved to allow Optometrists to easily perform retinal scans and tests that focus on the region directly behind the eye, yet there is only so many machines an optometrists can have in his room and still be able to maintain the integrity of practicing visual eye testing and management.

Pleasingly I can confirm my retina’s have not detached. I do have lesions and drusens in the macular at the back of my eye. There are scars over the right cornea, likely from an infection, but it seems old and not currently active. This is not new information, however disheartening it is to be reminded of it. Still, the fact that there is no permanent damage (new) to my eyes is positive. I returned to my bed. Mum stayed with me, popping in and out from the store for her food. Dad returned after lunch from his own doctors appointment with good results to report. We all celebrated this news.

Late afternoon my housemate Bow joined us for a mini party and was lucky to hear me tell my story 8 more times to three different Neurologists, two different immunologists, two ward registrars and then finally the head immunologist. It was about this time I was informed of the outcome of the MRI. There are more lesions in my brain.They are bigger, more wide spread and the old ones seem to be enlarged. The vasculitis has become more active and aggressive, they are concerned for me and unsure exactly where to go now. They do not want me to leave. They do not know what they can do as they cannot be sure that the treatment has been working as it should. It took two hours for all these specialists to run around this large hospital trying to find each other to discuss what to do. In the mean time they were also all contacting Connor and The Leo’s at Royal Perth Hospital to decide what to do, considering my past history.

The final outcome was me lying on a high bed at 6pm with my knees huddled to my chest. I was having a lumbar puncture to test for signs of infection and abnormalities in my cerebrospinal fluid. If the tests were clear I would be having a direct line of high dose corticosteroids injected intravenously over a three day period. The outcome of this would determine what the next step would be.

Needless to say I will be in here for a bit longer.

I am ‘holding it together’ but it is hard. Before this I was already exhausted at the toll this illness has taken on me over this longer period and now I just need other people to prop me up. All of my lecturers have told me to ignore study dates and concentrate on my health but I just need something else to think about. Is that so much to ask for?

Did you know it’s my birthday next Wednesday?

I will be turning 27.

Ten years of active Lupus.

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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.

9 thoughts on “The truth revealed

  1. Hang in there! Sending lots of positive thoughts and vibes to you!

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  2. Be well. Sounds like they are doing their best. I agree with everyone to not worry about the books too much. 😦 glad you have some company too.

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  4. Sending big hugs!

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