No gradual fade from summer to fall here!  One day it’s in the 90s, the next it’s cold.  Days barely making it to 70, and 40s at night.  I put my hoodie on for the season, so it’s official.  I think.  You never know, here.  I caught a break from the night sweats, but not the monster nightmares.  It’s Halloween all year, in my brain.  A Lovecraft Fest.

I feel a little under the weather, after the last session with S, which is unavoidable.  It comes with being a Nomi.  I just need to stay well enough to go to the next specialist appointment to find out how I die in the end!  Still, I need to walk to the pharmacy to get more DRUGS!  If my leg holds out.  I need the exercise, because of my leg handicap.  Catch-22.  My life in a nutshell.

Here is my apartment yesterday afternoon, as the sun sinks sooner and a cool breeze chases out the stagnant funk.

I spent the morning hanging out with S, playing, and even watching (livestream) the unrolling of the entire Torah scroll across the sanctuary and out the door of CRC for Simchat Torah, complete with klezmer band.  It’s always a fascinating spectacle, like your history flashing before you.  Avdi got a chance to just chill without even having to break us up.

E had taken over the kitchen baking more huge batches of delicious cookies.  I caught a moment to drink my coffee in the sukkah.  It was actually cold out.  K on his own initiative has volunteered to help mentor and supervise kids in his free time to work toward earning free two-year community college tuition, which is impressive.  That’s in addition to all his other extracurricular clubs and activities.  Y has been unusually quiet, even reclusive.

I’m back home now, with the window wide open, and probably with S’s cough germs, but I figure by now I should be fairly resistant to all those typical routine bacteria–even the Feared Tardigrade!  It’s the big contenders I may have to brace myself for.  I’m in that pre-bad news ignorance everyone wishes they could return to, so I’m enjoying it while I can.

Guess where I am?  Hint: it’s Friday, so the moratorium is lifted.  Since the last time (a week ago) S has been suspended twice from school, including today.  He gets hostile and combative, as well as displaying pathological demand avoidance (PDA) .  One of his meds has now been increased, to see if that helps calm him down, and we’re researching ASD pediatricians.

In spite of all that, we had a pleasant, non-eventful Shabbat meal and evening.  We were glad to be together again.  I’m spending the night so Avdi, who is beyond exhausted, can get to go out.

I also got to go in the sukkah again.  The yard is filled with masses of native asters and goldenrod and white snakeroot.  It’s actually cool and breezy for a change.  It’s supposed to go down in the 40s tonight!

I think some comic relief is in order right about now.

You may remember the “dungeon”, otherwise known as the so-called “laundry room”.  Filthy, with a few ancient, semi-functional tiny machines.  My amusing landlord just announced the installation of “brand new, state of the art” washers and dryers, to be maintained by an outside contractor, “a prevalent name in laundry world”!  (He’s Indian, he likes to embellish.)  So I took my life in my hands and investigated.

Indeed, there were a couple of each, new, tiny, coin-op machines, of course now more expensive to operate.  You can even use a mobile app, woo.  Over in the corner were piled many more used junkers than had been there before.  I’m guessing he tried the cheaper approach first, and finally resorted to a functional solution.  The room itself is still dungeon-like, although it looks like someone may be attempting to clean it up and paint over the mold and mildew.

I may even become desperate enough to avail myself of all this state of the artiness.  Obviously after a year without the personal washer/dryer Landlord-ji had said he would consider installing (for a higher rent), that’s not happening, nor can I afford it.  I’ll be breaking even as it is, if I’m lucky.

Wacky times at Watson Village.

You could say both S and I are suspended–he from school because of his uncontrollable pathological behavior, and I from coming over when he’s there for the same reasons.  The situation has escalated to a critical point for Avdi, and I’m in a state of limbo (suspense, as it were) until he can sort it out and get guidance and help.  I feel even more useless (though empathetic) than ever.  I’m hoping this crisis will lead to finding a workable solution for us all.

Meanwhile I’m just here at home, when I’m not at doctors’.  I have plenty of medical HW to keep me busy, mostly finding rides to appointments on short notice.  Naturally, yesterday’s hematology exam resulted in two more new appointments, one for a PET scan and one for follow-up.  As did the ENT exam–three Balance/Dizziness appointments, one of which is a three+ hour full eval.  I’ll be dead before they all get to the bottom of my various issues.

Since that wasn’t enough, I finally got an appointment for the latest COVID/Flu vaccines, almost two weeks out at the only CVS I can walk to.  (apparently distribution issues.)  From what I hear, the side effects from both at once are pretty nasty, so I’ll need a couple of days to recover, which I guess works out, since I’m basically quarantined at home for now.

I really don’t want to be doing all the above full-time for the rest of my decreasing lifespan.  Going through it with my parents was more than enough for me.  If ever I needed to spend whatever time is left meaningfully and productively while I still can, this is it.  Once I’m diagnosed with things, no doubt it will take up even more of my time (and money I don’t have).  I’ll go through with the specialist exams, and of course the dental plan of action next year, and then consider and weigh the options: possibly prolong my life negligibly by living in doctor offices, or spend the time with my family and friends, maybe even being useful.

It depends how one defines “quality of life”.  Being kept alive is not the same as living.

(Arnold Lobel, F&T Together)

Yesterday was disappointing for all parties involved.  I went to Avdi’s to watch S while A ran many errands.  He had to abort midstream because S had one of his meltdowns that I didn’t feel able to manage or contain.  E helped, but both of us were frustrated.

It started over something totally trivial, but escalated into S becoming obstructive, destructive, and almost pulling one of his running away episodes (of which there have been a couple already).  (Fight or flight mode.)  Avdi had to come back and take me home as a consequence of S’s behavior, and then had to schlep him along on errands.

I felt awful, like a failure when A needed me most.  Between S and Y and all the other stressors he’s dealing with 24/7, it’s too much.  And I’m not always being part of the solution, because I’m inadequate to handle some of the extreme ND behaviors.  When push comes to shove, I think I revert to my own lower brain fight or flight reactions.

Update: the consequences of S’s repeated inappropriate behaviors turn out to be an extended period without me there.

Today I needed the time at home, to complete a thousand different medical preparations.  A book’s worth of forms to fill out online for a balance/dizziness (vertigo) specialist, Medicare plans for 2024 to compare and see if I can afford and if my doctors are in-network, rides to arrange for yet more appointments, it never ends.  And that’s just for one person.

Tomorrow I have hematology/oncology to go to (concerning high white blood cell count).  When do oldsters even have the time to try to be part of any solution, when they’re constantly being examined and diagnosed for ways to die?!  At some point, I’ll probably just throw up my hands in frustration and f— all the doctors (not literally).  Or I’ll just plain run out of funds.

Sorry about all the negativity.  Too much real life.

(Arnold Lobel, Frog and Toad Together)

This weekend has been jam-packed and exhausting in a good way.  Friday I did the erev routine–challah, Shabbat meal, cleaning, etc.  Everyone got along and enjoyed the meal together.  Avdi got to take himself out earlier than usual, while I got S ready for bed.  S actually cooperated without a fight or meltdown!  The others were quiet and went to bed in a timely manner.  I slept over and even slept in.

Yesterday was a big day of prepping for a sukkah-building B&B.  I got the B&B stuff set up and ran errands for ice and drinks.  E baked mountains of delicious cookies in the kitchen.  Avdi built the sukkah framework.  I pruned piles of smaller tree branches and plants, and E chainsawed large branches down, which the kids helped drag to the sukkah.  The kids and some friends helped finish the sukkah and cover it with branches and decorate.  They did some token rounds of badminton just to say we did, and I got to talk to grown-up people.  As it got dark, Avdi and I and the kids said the blessings for sitting in the sukkah.  Another successful sukkah by Avdi, a collaborative effort.

I was not feeling my best all day, and the temps in the 90s took it out of me, so I was glad to come back to my apartment and chill and sleep in.  As I write this, it’s in the 60s and I have the window open.  I’m sure at some point I’ll go back and hang out in the sukkah.  (Forgot to mention, A tested negative for COVID.)