This Lupus Life

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

Hospital Part 4: Home

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After all the testing was over I had to wait a few days before The Team reassembled to discuss their next steps forward. I understand they were meeting on their own to discuss things without me present, but I was really just waiting for their decision so I could get home, cuddle my Polly and wait for Santa. During the interim I had a few final physiotherapy sessions to confirm my yoga abilities and how far I was able to go with it.

The physios were impressed with my control and movement but I was strictly not allowed to do much of anything until I heard more from Tim and Connor. I was fortunate that both of those guys are regular Ashtanga practitioners themselves, so understood the positions and physicality of yoga, but this is also why they confirmed I could only do part of the supine and standing range of the Primary Series and definitely no inversions. When in Adho Mukha Svanasana (Downward Facing Dog) I was try look up or forward softly. Also if possible I should try to keep my heart rate lower, body temperature down, don’t jump and if someone can check on me every quarter of an hour, that would be very wise and safe. So best not to practice at home alone.

In the afternoon Abigail visited me and we discussed at length every illness, diagnosis, symptom and treatment I had had since I was born. Again she confirmed I most likely did have Lupus and decided to hunt down past blood tests I have had over the years, as well as treatments and various other information. Interestingly enough it wasn’t until this day that I was put through a wacky number of pregnancy tests and I had to embarrassingly explain to each individual that, with certainty, I was definitely not pregnant. I wonder at the wisdom of waiting to ask until I had been in hospital 10 days. With the tests I had been through I would have thought it should have been a priority question next to cardiac and respiratory ailments. We all had a good laugh over it any way.

After Abigail I was visited by Connor. He dropped by for my full neurological obs and sneakily suggested I may be hearing good news in the morning, so my mum could come in earlier if she wanted. My mother is magical, she came all the way to Perth to be with me and managed to miss almost every consult I had with anyone from the team the whole time I was in hospital. Not intentionally, but I had started by that stage to suspect some serious misfortune on her part. She wandered in the door (only a minute after Connor had left) and I explained what had been missed and stressed that she should be at the hospital by 8 so she could hear what was said, ask any questions and then, hopefully take me home. She promised she would. She was excited.

As suggested, during breakfast The Team assembled around my bedside for the debriefing.  They had run all the tests they could think of for the present. A definitive diagnosis had not been achieved, but anything potentially serious or life-threatening had been ruled out. I did not have Anti-Phospholipid Syndrome. I did not have Cerebral Vasculitis. I did not have any concerns regarding my heart or valves. I did have Lupus. The issue with the lesions within my brain was not definitely related to Lupus, but it did need to be treated. The lesions were not tumours, it appeared just  build-ups of blood. They permanency of any neurological damage could not be determined until it was known if they can decrease in volume and quantity but this shouldn’t be difficult. I could go home, now that everyone could be sure I was not at risk of serious injury, provided I maintain a ‘bed-rest-style’ manner and no alcohol or excessive time in the sun. I will still follow up with a Neuro-Immunology Team at the Neurological Clinic at Royal Perth Hospital, who would organise more tests and appointments for me for early January. Until then, as long as I keep out of trouble and take 50ml Prednisolone daily I should not have too much to worry about.

Of course mum didn’t arrive until 11, and my bags were packed, I was ready to go. She was pretty disappointed she missed the doctors, but that only lasted a millisecond as she was just so pleased to be taking me home for good. I have to say, as much as I enjoyed my time at Fremantle Hospital and hanging out watching TV with Flow, there is nothing as good as sitting in the shade on the fresh laid grass and drinking a cup of tea.

It was good to go home.

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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 “Hospital Part 4: Home

  1. Pingback: Strokes, Partial Focal Seizures and Transient Ischemic Attacks | This Lupus Life

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