WHERE HAVE I BEEN AND WHAT HAVE I BEEN DOING?
I am just coming out of a period that started, really, far before Sep. 26 when I went to Stanford U. hospitals for a badly needed surgical repair.
It involved taking care of myself in ways I had to learn, going through all kinds of medical tests to make sure that someone with ME/CFS (me) would be a suitable candidate for surgery at all, and then getting there at the right time without the coronavirus putting a stop to the whole parade: I literally had a covid PCR test on Sunday Sep. 25 in a parking lot in Redwood City – all ready for the hospital the next morning – and being fairly sure I was not sick, but knowing that the juggernaut would come to a shuddering halt if I happened to be and be asymptomatic.
And it would take months to get another surgical date, months I did not want to have to face.
Husband and I had isolated in our apartment in the retirement community for over two weeks, going out for doctor’s appointments, and husband going down to dining to retrieve takeout every night for dinner so we wouldn’t be exposed to the cases that seem to randomly infect this place now that people are being so less careful with masks and gatherings.
I had literally been waiting 2.5 years for this surgery date, since I needed it just as the pandemic was getting going in 2020, and anyone who could avoid going to a hospital did so.
Before going to my medical destiny, I published NETHERWORLD:
It was finished in March, but the complications of the health stuff kept me from focusing on cover and formatting, and I finally got help from friends, Bill and Teresa Peschel of Peschel Press in Hershey, PA. Bill kindly and accurately produced the cover from my notes and comments (patient man!), and responded to many rounds of requests for corrections to the interior formatting of the paperback – and I did the final touches to the ebook cover and interior produced by Scrivener on Sep. 18 and 19 and uploaded the files, which Amazon accepted with relative alacrity, making me no longer a one-book author.
And then came the surgery and its aftermath – the HORROR
The operation went fine, and the results have been stellar and relatively painless, and most everything now works properly, and all of it as well as possible.
But pain management went flooey – starting with side effects of medication changes the week before, and then continuing for the most pain I’ve ever had, for weeks, accompanied by side effects from other new medications designed to help, to finally me getting off EVERY NEW MED, and back to my long-time stable pain medications from before – and them slowly being enough.
I tried to tell them I’m a non-standard patient; I thought they had listened.
Don’t know what I’ll do if I ever need to do something like this again, but there will be some very interesting and thorough conversations somewhere along the line: ME/CFS patients are NOT normal patients.
It’s over, I will be released from restrictions in a week
and I will be able to use our warm therapy pool, and then work up to riding my tricycle, and longer trips that the bare minimum rides on Maggie, my Airwheel S8 (a bicycle seat on a hoverboard).
And after getting my brain back these last few days, and catching up enough on sleep to be coherent (pain makes it IMPOSSIBLE to get rest), I have a big paperwork task to finish and send to the accountants.
And I will then be able to start up my new Macbook (I got the midnight blue one), and plug away at organizing the upgraded software I bought it for, and get going to finish the trilogy by writing volume 3, working title LIMBO.
I will be back to whatever passes for normal in this body and this household.
Nothing has yet changed on the research horizons
Rather, it seems that every day some scientist group has a new theory about what may be going wrong in the aftermath of viral infections such as Covid-19 and ME/CFS, and they want research money to find out if they’re right.
One of them will figure it out – the economic impact of millions of people coming down with Long Covid cannot be tolerated.
Except for the diehard holdouts, most doctors are starting to believe that post-viral illnesses are real and not psychological, or hysterical. They have no clue how to help us that gets down to basics and CURES us yet, but they are starting to treat the symptoms and minimize some of the miseries.
There is where HOPE lies: enough scientists committed to figuring it out, supported by research funds. Whether it is too late for people like me who’ve been ill for decades won’t be known for a while, and indeed the research horizon, my husband cautions, is more likely to be five to ten years than anything much faster: the coronavirus does an incredible amount of damage.
Some of it may not be fixable. I may not be fixable. Which would be a bitter conclusion I’m not ready to face yet.
All us post-viral illness folk still have to make it through the days
If you have it, my sympathies. If you have managed to avoid long covid, please be careful – if you get covid, your chances are estimated at 10-30% to not get better.
Have sympathy if you are not ill or have not lost someone dear – the tragedies are endless.
And send good vibes, pray, or cross your fingers – because I can’t wait to get back to spending my daily tiny allotment of energy FINISHING Pride’s Children.
If you read mainstream fiction, or psychological literary fiction, and haven’t read NETHERWORLD, it’s on Amazon in ebook and print. And in KU.
I would love to hear what you think – especially about whether it ends suitably.
And you can sign up to be informed about matters connected with the books at prideschildren.com.