Scott and Rachael, this is Dodie. I am feeling very concerned because Scott is sounding very much like Joni did when she had a psychotic break from overdosage of Dexamethasone. It took me and a good doctor and a good pharmacist almost one year to get her meds straightened out and tapered off. She never did really come back to herself after the episode although the real craziness did diminish. Please do not let yourself be discharged until you are more stable. This seems to be quite serious and should be addressed as such. Love to you both. 

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Thanks, but please don't be.  I got discharged from the hospital after we checked me in last night because I started hallucinating. After dinner.  It turns out that cortisone-induced psychosis is a real thing, and I'm still in the middle of one.  A night on what I think's the first Valium of my life and a good nights sleep helped immensely at calmed me down, but I'll be on the edge until my cortisone level drops below some threshold, which starts tomorrow, in teeny tiny steps - 40 to 35, because they need to restore sanity while making sure the disease doesn't spring back to life.  No one knows for sure how long the tapering will take, but they're hoping in about a month I'll be off completely off, assuming the new drug works, but if not we're a whole 'nuther ballgame.

To maybe assure you about how I am, the hospital experience was an enlightening and reassuring experience.  I come away from it knowing something new about myself and with a new word and classification in my lexicon - I'm not a hypomaniac, which I didn't realize was a clinical classification.  And it feels exactly right.  It really matches who I've been my whole life.

The interrogation was intensive, exhaustive, and conducted by a panoply of medical demigods, each of them the local expert in his or her own domain.  GCA is an odd, very multifaceted disease - there's vision, brain, drug, and a few other minor aspects like sleep management in play; and I'm convinced that as obviously bright and insightful they all are, no one of them has as well rounded picture of what's going on as myself in the middle of what feels like that fable of the blind men and the elephant.  None of them is by any mind blind except in some small piece of the puzzle that they can't see because they've never heard of or been exposed to some facet of it.  They're all gods in their own domain, but I'm the god in mine - I'm the only one that knows and sees all of my experience, and thankfully I'm reasonably smart  insightful, ans-aware, together with Rachael who participated through the whole session too and has her different perspectives and gets an equal vote in the decision.  Together we know our priorities and which demigod to defer to the judgement of our decision-making.

Because our top priority is clear-eyed and one neither of us has the least uncertainty of: we'd both rather I lived a shorter life sighted than a longer one without it.  And the top god in our pantheon here is Dr. Greenberg, my rheumatologist.  He's the one managing the disease itself and is managing tapering me off prednisone gradually enough that they can be reassured by the periodic blood tests that I'll likely be taking for years or until the end of my life that the syringe-delivered, expensive, travel-constraining wonder drug Tyeene has the GCA dragon under control, sleeping away harmlessly in his cave somewhere.

It takes the better part of an hour or two though, with the local demigods showing up in ones or twos or threes or on a zoom session or in side conversations we don't get to hear or participate in.  Along the way some think I need to start cutting down the prednisone immediately, because they don't understand why it's even being taken in the first place.  Someone thinks my eyesight might do better if I got more sleep and spent more time in the dark with my eyes closed (agreed!  I'll do that, starting tonight).  Someone thinks I should take Valium daily, starting with a small dose at first and see how it goes as long as I don't get addicted.  Some folks think I should temporarily take anti-psychotics until this wave passes, even though it might cause weight gain and swelling because they don't know that much that's already a big problem with me - I've ballooned up nearly ten pounds this week.  Some think the prudent thing is to keep me here under observation for a few more days until episode passes.  Some clearly think that behind the GCA mask is potentially a true psychotic who should definitely be on drugs.  

I'd say that if the last voice to speak with us, the psychiatrist, probably has the broadest, best thought out perspective than this wierd elephant of any demigod in the pantheon; but he's only partially knowledgeable about GCA and how you can get off prednisone.  I'd say we're in the shrink's virtual office, a zoom session, for over a half hour. He asks great, insightful questions from every imaginable perspective.  He concludes I'm not psychotic, but I'm hypopsychotic.  It's a new term to me, but I fully agree.  It sure looks like the leathery skin I've been hiding out inside of my whole life.  But like everything, there's a whole 'nuther spectrum for hypopsychotics, and just what sort of wing nut am I on this one?  Am I prone to snap, get into rages in stressful situations, how am I in crowds and around people, is there any tendency or history of violence to myself or anyone else?  Have I had any previous psychotic experiences not related to this last half month and the management of my GCA crisis and condition?  I pass every test until the final one, the test I've been most fearful about, finally comes.  Son, have you ever been arrested for being a litterbug?  Uh, oh.  No, I told him, I just came here to sing about the war.  

So fortunately they let this one slide this one time, and then we all we all get together and join in a circle and hum a few bars of Alice's restaurant, and not long afterwards Rocky and I leave the hospital with a small packet of Valium that will get opened only if she and I agree that I can't sleep enough at night and I need to take one pill as needed, and the agreement between us and our pantheon of demigods that if Rachael and I get new information to change the situation we're only an Uber ride away from the hospital and promise to return if needed.   

Thanks so much for all of your outpourings of caring, support, advice and love through this entire ordeal.  Lord, what a half year!    Love you back, Scooter

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Do many of you recall or know of Robert Frost?  (It's one of the oddities of being so old that my cultural and lived experience is so different than most people I encounter in the world, including even Rocky.  

Take this hospital experience.  One of my helpers today was an orderly - a bright young orderly, born and liverpd her entire life in Portland but immigrated from Eastern Europe probably not long before she was born.  I told her about my excitement over hearing that Dylan sang his famous anti-war song in Athens Greece yesterday, the first time he sang it in public in over 25 years.  Clearly a bright, educated, alert young woman, but she's never heard or heard of the song, but thought maybe she's heard the singers name.

So anyway, Frost.  At the end of his life, he died three years later at the age of 93, the same year Kennedy was assassinated.  I was 17 at the time, in my senior year of high school and just beginning to take an interest in poetry.  I can still visualized the celadon-hued hardback cover of his complete works, probably the first book of poetry I owned in my life.

One of my earliest political memories is of the family watching the JFK inauguration in 1960 on our B&W TV back on our first home in Seattle near Sand Point way and seeing Frost wiping back silvery wisp slip of his hair from his brow as he read his poem.  Not this one though, or even the one he'd had planned to recite.  That was The Gift Outright, one he'd written specifically for the event but couldn't read because the sun's glare was to bright and he had to deliver another one on the spot: The Gift Outright, a lengthy textual work recited from memory.  At the age of 86, three years before he passed.  I had no idea of what a remarkable achievement that was at the time.  I just hold the image of him peering into the glare of the sun, wiping that hair from the brow.

So this isn't either of those, but it seems fitting to the day and if you've never read  any of Frost's works or even heard of the man, here's one of his much earlier and more popular and accessible poems, one I remember still and I think even with my poor memory mastered at the time (although I doubt I recognized its sha'n't, not sha'r).

: one of his own, written in 1910 when he was a young New Englander, The Pasture, written in 1910 when he was still a young New Englander: The Pasture,

I'm going out to clean the pasture spring; 

 I'll only stop to rake the leaves away (And wait to watch the water clear, I may): 

I sha'n't be gone long.—You come too. 

I'm going out to fetch the little calf 

That's standing by the mother. It's so young, 

It totters when she licks it with her tongue. 

I sha'n't be gone long.—You come too.

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So really friends, we love you all too but let's All move on to a monumentally mor important and urgent problem.  Let's join and hold hands together in this huge virtual circle, hum a few bars along with Aaron ourselves, and then go stop the war.

Well, let's nearly all.  Team Anderson will be there in spirit, but physically we'll be in Wales.  

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