My #spinaltap (or #lumbarpuncture) this evening to double check there is nothing suss going on in my #spinalfluidand I have no #infections or issues with my blood. There is a lot of #nerve sensation going on. Another night at #FionaStanleyHospital for lil Jessie. #cerebralvasculitis #neurology #Lupus #sle #SystemicLupusErythematosus
The lumbar puncture on Friday was a success. By that I mean that there was no indication of infection or inflammation in my cerebrospinal fluid. There was also no indication that my cerebral inflammation was due to Antiphospholipid Syndrome instead of the presumed Cerebral Vasculitis. This was important because there will always be some level of uncertainty about that diagnosis simply due to the fact that until a biopsy is undertaken on the lesions within my brain (which is likely to never take place). I am at too high of a risk for too many different reasons to ever be a contender for this kind of test (actively removing a small tissue sample from my brain) and so the Vasculitis diagnosis will remain but a highly secure hypothesis.
The importance of knowing that I do not have any indications of infection or inflammation in my cerebrospinal fluid was that it determined the speed that the doctors could pursue viable and effective treatment options. By having a successful lumbar puncture the most aggressive treatment option became available. This, of course, meant for me prednisolone (steroids). Due to the size and growth of my brain lesion(s), which I was informed often was much more common and larger than any of my previous scans suggested, aggression was needed.
A year ago…
It was a year ago that I was first admitted for the many #cerebral masses from my #cerebralvasculitis . in June the original 2 dozen had gone, to be replaced by this one big beauty. Today I had the all clear confirming the white spot you see had all but disappeared. Apart from some residual compression my brain is clear. Thank heaven for medicine! #sle #systemiclupuserythematosus #lupus #healing #yay #neurology
How to read this #MRI: it is reversed, the big white patch in the bottom left is in the back right side (right posterior #cerebellum) of my #brain. In the big white patch is a smaller, brighter white spot. This spot is the scarring from my old #lesion. The lighter white patch is my new current lesion. The lightness in the convoluted #brainmatter (cerebellum) in that area of my brain indicates a general #inflammation. Otherwise its all good. That lesion feels to be the size of an elephant made of razors. It hurts. Don't forget to look through my older posts for the original lesion MRI! #cerebral #cerebralvasculitis #vasculitis #cerebritis #lupus #SystemicLupusErythematosus #sle #autoimmunedisease #chronicallyill #chronicillness #steroids
My parents had at first anticipated that I would be out Friday night and so had organised for the whole family to get together over a nice roast dinner and celebrate our good health and fortune (not sarcastically or ironically). The news of the lumbar puncture and imminent aggressive treatment plans meant that The dinner was in my honour and my father brought B-Dizzle (my younger brother) to visit after the meal. Gallowe was working a night shift and the small amount of time he had to visit didn’t work into my visiting hours and so he had to contend himself with a late supper with my mother and Bow at my place.
Me being in #hospital seems to have become a bit ho-hum for my #father. He simply strolls into my room with the paper, asks the tea lady for a cuppa and settles into the windowed bench seat. I'm pleased to know they are not worrying themselves too much over my current condition and they are taking time for themselves, without neglecting me. This hospital is so pleasant to stay in and this ward is very tranquil, given the high level of care and attention given to #blooddisorders and #neurology patients. #SystemicLupusErythematosus #sle #lupus #cerebralvasculitis #vasculitis #autoimmunedisease #autoimmune #chronicallyill #chronicillness #epilepsy
Early Saturday morning, after my folks had completed necessary shopping (I think for my birthday present) they brought some high fibre, low carbohydrate leafy green veggies to snack on, peppermint tea for bedtimes and chocolates for the ward staff. The doctors came for a full debrief on my situation and to prepare my treatment.
- Large mass is inflammation in brain
- Inflammation is caused by overactive immune system (lupus)
- To reduce inflammation the immune system needs to be neutralised somewhat
- To neutralise immune system there can be no presence of infection
- No infection means highest level of immunosuppressants (steroids)
- Quickest and most aggressive means to activate steroidal treatment is intravenously (IV) as methylprednisolone
Got it? I would be dosed up on an IV drip of methylprednisolone. 100mg (wowsers that’s a lot!) each day for three days. Following this they would determine from my neurology observations what was most advisable for me. Each day at lunch the nurse plugged me in and the dose ran on a 30 minute course that left my mouth with a bitter metallic taste. The site smelt of singed acrid metal.My folks left at lunch and I got to on my writing box emailing all my university coordinators to ensure everything was up-to-date and the situation was transparent. My folks bought all my study books to hospital so I could carry on as normal. The issue with my health was not that I had trouble with my brain, or I was too unwell to complete my studies, but rather that I was immunocompromised to the point that I could not interact with anyone with questionable health or if the weather outside was indeterminate.
Saturday afternoon Gallowe came dressed in his Saturday night best, looking just as he would on any of our date night dinner escapades. He looked gorgeous, and I have to admit was likely the cutest thing to be on my bed this entire last week. He is doing so well, given that he has barely had time to immerse himself in the basics of Lupus, let alone my specific convoluted road and that I was throwing him so far down the rabbit hole it was almost unfair. We spoke little, just listened to the radio and shared comments on what we have been thinking about each day.
Due to the extreme contrast of no steroids to IV 100mg I didn’t get to sleep until 2am in the morning and was back alert by 4am for the sunrise. Never have I hated a sunrise before, regardless of how pink, purple and orange this was or the way the gold was captured in the low lying clouds. By 6am i felt a razor edged elephant had crept into my skull with me and with no foreseeable way to end the pain.
Hank evans I was in a hospital. Right?!
At lunch my Hip had arrived and took me downstairs for coffee. Only shortly later The Craft Club arrived. It was a world of joy to have an afternoon with the girls to chat and share stories and feelings. No craft happened, but that is really only a loose pretext for our get-togethers. All afternoon I spent with these four lovely ladies collecting up all the female love and heartwarming openness that they bring out in me. Only briefly after they left I was joined once more by Gallowe. His shoes were off and he was on my bed with much less convincing. We had cups of tea and talked about nothing. We tried to plan or guess what I might do this coming week. We wondered if I would be able to have a birthday and when. We finalised a few plans we have been making for a surprise.
We have a surprise. I was going to tell you this weekend. But life isn’t how you expect it to be. You can only do your best with what you have when the time is right. There is no bending water, only gliding you hand in the ebb and flow to direct it slightly. What I do know is that the methylprednisolone at 100 mg is strong and keeps me awake. It makes me feel hyperactive. It hurts my kidneys. It should help. I will take these things as they come. I cannot fight my life as it is happening. I can only make sure that I can make it enjoyable. I cannot wait until I can share with you my surprise.