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| Last night's walk with my hoodie tied around my waist. I do walk with a stick. I am not that steady and I like my stick. It came from around Mica Creek, QLD and is a sturdy stick. |
Health-wise, nothing has changed except possibly more weight gain. I do not even recognise myself. That is not hyperbole. I do not know this huge, fat face in the mirror. I do understand that it is part of the negative effects of the steroids. They can cause that. It is called “moon face.” The steroids have also had positive effects. My double vision, blind-spot, numbness around my middle, and some of the other neurosarcoidosis symptoms have ceased. And after 8 or so MRI’s, tonnes of bloodwork, x-rays, eye exam, CT-scans, spinal tap, arterial biopsies (I’ve got cool scars on either side of my forehead from this past July's biopsies of the arteries in my temples) that is what they tell me I have, Neurosarcoidosis. Nebulous, non-specific bullshit, invisible, dizzy, confused, depressed, neurosarcoidosis.
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| I have scores of selfies in hospital awaiting procedures and surgeries etc and so on. I mainly keep them to look back and see the dates of when these things were happening. |
I saw my neurologist on 20 November and treatment-wise, I am to continue on a low dose of steroids as well as getting the injections in my head to help with my migraines (yes, they continue of course. Gratefully, not too frequent and mostly they are not incapacitating). I can do what needs to be done. For what that is worth.
Some other “symptoms” continue. I have daily dizziness, the head pressure issues in relation to the position of my spine (maddeningly NO one knows what that is about. It is what began my adventures in neurological bullshit). However, that pressure now often explodes into skull-crushing pain (it just did ten minutes ago when I got up and walked into the lounge room), BUT it only lasts for a few minutes. This particular pain thing is kinda new. I also deal with daily general exhaustion (not tiredness, exhaustion) and most frustrating for me, the deterioration of my concentration. It is destroying my ability to write.
I was finding some joy in working on writing the account of my travel and birding adventures since the time of An Australian Birding Year. I have even made sketches of cover ideas for what could be a second book. I am hoping that the acceptance and bit of success of my first book could open the door to publish the “sequel” so-to-speak. Regardless, I am going to write it. Or rather I will continue to write it once I can get my shit together. It ain’t happening right now. I do trust this is not a permanent thing.
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| Not sure about the name, this is the working title and it needs a more clever subtitle |
As far as exercise goes, I am “forced walking” around this “village” (as I say, "It’s not a community, it’s a corporation") where we have our house. I go very early in the morning and last night I added an early-night walk too. I may try to keep doing that. I listen to books-on-tape in earbuds. On these walks, I want to be left alone. Even including back when I went into a month of rehab in 1990, I have never been less fit than I am now. I have zero endurance. I get out of breath flossing. I will keep walking. We will see.
I have now written a bit of what has been going on. I do hope no one who reads this feels I am whinging. I am just putting things into perspective for myself and for anyone who cares to know what is really going on with me. Until something drastic changes, I will go back to just posts of birds and my book and stuff for the coming weeks and days.
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| My book has been an Amazon (Aus) Best Seller and that makes the validation slut happy. |
Make no mistake, I am extremely grateful for so much, especially that I live in Australia. My heart breaks for my loved ones in the USA.
Sending love from my desk in my study.
