Before I begin on my new path in 2016, the path to a long-term recovery that is, I want to ensure that all aspects of my past illness have been fully explained. This is so you can understand why I make certain choices, why am I being treated by doctors with certain treatments and what the impact of my recent bout of illness have actually had on me.

First I will explain the factual details of my brain lesion(s)

As it came to the end of 2015, I tired of constantly saying to people,

“My lesion/mass…well, we don’t know but it isn’t a tumour…I know, such a relief…they don’t know what it is but it keeps coming back and gives me grief…oh all sorts of things, but mostly these seizure things that are like strokes but not long-term worrying…they seem to block the blood flow but we don’t know why they keep coming back…yes it is terrible…no I don’t know anything more…”

So I gave in and did the bad thing. I said,

“I have a brain tumour.”

I know. It was morally and ethically wrong. It was a lie. I felt bad, but speech and the effort to be long winded were lacking in me. To be fair, for all we knew it may well have turned into a tumour, or have the same impact on me long-term as a tumour. It apparently was affecting me as some brain tumours can, just without other tumour side-effects. I only said it if I was directly asked to explain briefly what my situation was by someone that was not a close acquaintance of mine and was not involved in my treatment. Close acquaintances were told the tedious ‘long version’ and for everyone else? Don’t ask don’t tell, basically.

What they were:

Fluid build-ups due to chronic inflammation in the minor vessels of the brain. They were not clots, which are created when platelets congeal within the blood to prevent blood loss at the site of an injury. Nor are the build ups solid in a way that cannot be undone. I was not ‘leaking blood’ at these sites either. There were no unusual foreign entities within the lesions, which confirms a lack of tumorous cells. There were lymph cells (lymphocytes, to find out about these see the bottom of the page) in an unusually high number, which added to the inflammatory nature of the build-up. 

Image sourced from http://turkeyfile.com/tag/julian-assange/

Where they were:

The small blood vessels in the occipital lobe of my right cerebrum. They say the side of a brain controls the opposite side of the body and, yes, the implications on the left side of my body support this. The cranial biopsy involved a drilling in the crown of my skull on the right side. If I get confused I can just touch the lump where the bone healed after it was replaced/grew over (?). There are four parts to the brain, and then many sub-regions. Each is needed for something different and from what I can tell there are as many truths as there are rumours about these functions. I can attest to the fact of what you experience is often inexplicable by even what science currently knows. According to science and medicine, the occipital lobe interprets the information our eyes receive for processing by the brain. Yes,if lights change quickly and often I may become confused. But that happens as well for temperature, movement and noise. I also speaks not at all for why I lost speech, am now noise and light sensitive and had bouts of being unable to use half my body. You can see with the size of my last lesion that it may have entered other ‘regions’ but it was not like that any of the other times so #questionmark…am I right?

How big they were:

The most recent and largest appeared to be perhaps an inch or two across and much longer. The rest have all been in smaller states from smaller than a pea to the average of a pea size.

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

A photo posted by Jessie Frost (@thislupuslife) on Aug 9, 2015 at 3:22pm PDT

How many/ how often they grew:

When they first grew there were close to twenty. Since clearing initially they’ve come back in various amounts always a little less than the time before but contrarily increasing in size. A big ‘episodes’ (stroke/seizure/fally-downy-thing) would occur every 4-6 months on average, which indicates they would be growing from about 2 months from the last episode (it took perhaps 2 months for a new medication to clear my head of the existing ones). The scary part for me was that within the largest one (of recent times) is a tiny area that has grown consistently in the same place. This has, it appears, left a scar. It is too deep in my brain to be tested for surety so we may never know.

Lymphocytes: A lymphocyte is a type of white blood cell that is part of the immune system. There are two main types of lymphocytes: B cells and T cells. The B cells produce antibodies that are used to attack invading bacteria,viruses, and toxins. The T cells destroy the body’s own cells that have themselves been taken over by viruses or become cancerous. – U.S. National Library of Medicine