Here I am again, needing to blow the proverbial dust off things. I've been in survival mode once more. Like I bought a new bed a year ago and it is still in the box.

But this month I am setting aside the time for me while the boss is away to clean out my room, and get stuff set up. I'm fighting thru the fatigue to make myself a real space to be.

I'm getting that crappy broken box spring out to the curb.

I'm putting up the curtains I bought for my closet, washing the curtains I got for the window and putting up the string lights.

I'm putting my new sheets on the bed and getting a quilt finished.

I'm finishing a book, or two, or three.

I finally have some energy, now that they finally figured out part of what has been going on. Why did they wait almost 3 years to refer me to neurology, again? They determined I have vestibular migraines. Now on a 150 mg of a very strong drug, with meds here at home to handle a breakthru migraine. Had a third set of imaging today, CT this time, as specialists disagree (this is ENT #5 with different specialties) as to what is causing the intense pressure on the sides of my head. Possibles include everything from ear tubes to a jaw specialist depending on imaging results.

I'm finally thinking about things again like finishing quilts, really enjoying going to the theatre, playing a computer game, reading... I am slowly starting to feel like myself again. Things like word puzzles, etc not quite yet for more than a few minutes, but I'll get there. Have to force myself not to push myself too fast and lose this hard won progress.

I have to remind myself of all the work it took to get here. And the $$$$ - I am ever more aware that diagnosis is a privilege. PT, OT, Speech, Swallow Therapy, tests, scans, shots, Meds, all the many pieces of equipment both durable and just day to day from a walker or bath chair to a grape slicer, hundreds of doc appts - I quit counting when I hit 75 last year alone, so over 3 years, who knows. I cannot risk all that by pushing too fast because I get impatient.

Especially now that my poor primary doc is going to have to coordinate all my care, due to the massive federal grant cuts my large teaching hospital is closing the long covid clinic, the only one in the region. I know my doc will do his best, because he has been great helping me find specialists and admit when things weren't in his wheelhouse - but most primaries don't know diddly about long covid and I have run across some docs, even some specialists who won't even acknowledge it exists. I fear for their patients.

It is disability awareness month and Chronic Illness Awareness Day, So today of all days is my day. Why, then, did I feel so damn invisible?

You are always pursuing something or being pursued by it.

From early elementary school on we learned about the Declaration of independence and “life, liberty and the pursuit of happiness” – what does that mean, exactly?

It firmly states “pursuit” – it says nothing about actually catching it.
Meanwhile, other things are pursuing you as you try to avoid them.

Health problems and their accompanying medical bills, a job that seems to want more and more of your time and energy for the same crappy pay, trauma, memories, piles of laundry and crap you haven’t had time to deal with - you name it.
Maybe the secret to life is that is just a chase – the pursuit of what you think will make you happy, while trying to avoid other things, or deal with them and keep them from chasing you.

*blows off dust*

*peeks under lid*

LJ Idol is moving over here, which means at least for that, I will be, too. Learning how to use the controls over here before I start posting. After a bit I'll start migrating stuff from LJ in case it goes down.