Keep walking

 My step-grandfather passed away peacefully and unexpectedly in his sleep on October 21st. We weren't close, and he wasn't functionally with us the last eight years or so. I have not really known what to say that isn't condescending, trite, or worse than saying nothing at all, so after two glasses of wine I wrote that in a card with some memories and stuck it in an envelope addressed to my grandmother. 

I think my disc is re-absorbing itself, because my pain is way waaay down. I mean, not gone, but down. I still have a lot of pain sleeping, and I don't have my full range of motion or feeling in my thumb back. But it's much more predictable and my shoulder hurts a lot less.

I mean, it's either that I'm getting better, or I'm getting inured to the pain?

Either way, I'm thinking about maybe trying some small yoga and maybe trying to get back to sewing a bit?

I've been waiting for over a week for the CPMC neurologist to even get back to me; at this point I'm seeking other resources. I left a message at UCSF, because I don't want to be pressured into what is essentially a life-altering surgery. That said, I'm at my Out-of-Pocket maximum for the year right now - it's worth doing while I've got the option and have coverage, especially given the horrifying prospects for health care if Things Go Poorly in the upcoming election. \

I've got a two page Google Doc of questions for my follow-up with the non-dud doctor, but I'm still super scared about this. Any time you have a surgery where the disclaimers start with "we could nick your vocal cords and you might never speak again, we might fuse your neck so that it's permanently pinching a nerve, and also we could nick your carotid artery while we’re dicking around in there and you could DIE." I keep seeing the xrays with two screws per vertebra and it just makes me cringe.

Work is going. I feel so scattered right now, it's nice to have something that's just sort of cooking along there without my help. It would be really nice if just one of the many things that're taking up brain space would resolve - the DPO sale, the acquisition, health stuff, therapy, covid, the election, the back stairs...

Regret

The orthopedist was brisk and bright and professional, and told me in no uncertain terms that he didn't think any of my pain was from an orthopedic injury (thank god?) but that it was more than likely all from my neck. I told him I was seeing a neurologist in two hours, and he asked if I was seeing someone in his practice. I told him no, and fished the ream of printed forms out of my bag to catch the name of the guy I was seeing. The orthopedist hmm'd, but would not say more, but left me with the names of three other neurologists, including one in his own practice.

But he was kind, and he said (probably noticing the wide eyes and the dampness at the edge of my mask) that I was going to be okay, and that I would get better. I cried a lot while he was printing out those alternate referrals. Was it the early hour? The prednisone? Was it just finally having someone who knew what the fuck was happening? I don't know. But it was a nice bulwark against what came next.

I expected it really. The ream of poorly photocopied forms was a clue.

When I walked in to the neurologists office, an 8x8 space stuffed with chairs, there were already four people present. And although I'd filled out literally every form in advance and hand carried my CD with the MRIs, the check in process was as painful as possible. Insanely unprofessional. I was then left in an exam room for 45 minutes - more than long enough to note the slovenly and utterly unhygenic surroundings.

The doctor, when he arrived, looked bored or drunk or possibly both. And although he'd had, presumably, 45 minutes to look at my file and MRIs, he asked me a bunch of vague and demanding questions, including if I was married, then with a noise of disgust told me to put on the paper gowns for the exam. I've never seen a more shambolic excuse of an exam. He was bored, he was just going through the motions, he literally tossed the exam implements on the table once he'd used them, then picked up my clothes to sit on the chair closer to the exam table and tell me that he was recommending an epidural but that at some point I was going to need surgery.

I could not nope out of there hard enough. By the afternoon I had one more appointment (Monday) and a new referral for someone in a more professional organization, to try to find out what my options are. So, that's a few days I've lost, but I also feel a lot more in control of what's going on.

The chiropractor yesterday was also helpful - she said that the MRI photos I showed were definitely bad, but not even the worst she'd seen. So there's pain still, but there's also hope. And now I mostly am filled with regret for not paying more attention to posture in all these years at the computer.

'Significant Findings'

 I spent several boring (and unexpectedly painful because spasm) hours inside a loud vibrating tube yesterday. I then spent several more last night going through the DVD they burnt for me and looking at MRI pictures. Hello, more royalty-free Halloween decor, right?

But, while I have only enough anatomical training to get myself into trouble, certainly not enough to interpret an MRI, and also only the free "lite" version of the MRI viewer app, there were definitely some things that looked to my untrained eye, um, not good.

Today, in the middle of a meeting about my company getting acquired (oh yeah, so um that happened since I posted uh, six days ago) I got a call from a phone number I recognized as being the "outlet" number for my doctor's office. It was my PCP; she left a voicemail that said drop her an email and she'd call me back. 

It's never routine or good news if the doctor wants to give it to you in person. I left a message and she called back just as I was sitting down to eat lunch.

There were "significant findings" and as she read back the neck diagnoses ("moderate disc extrusion", "severe central canal stenosis", "foraminal narrowing") my hands started to tingle and I realized that for the first time in almost a month it wasn't the pins-and-needles pinched nerve feeling but the clammy panic tingling. "So it sounds like you're seeing a specialist tomorrow... two of them? I'm really glad. Neurosurgery was the right call, I know you weren't sure, but they'll know what you options are." 

The shoulder diagnoses after that were almost routine by comparison, and while scary, a certain amount of Googling revealed that about half of the narrative findings meant "this body is over the age of 30", while the rest are scary  ("tendinosis", "Superior labral tear", "adhesive capsulitis") but seem to have knowable solutions or fixes. And yeah, just enough anatomy to get myself into trouble means that I probably, while trying to fix a nerve thing that cannot be fixed, stretched myself into an actual cartilage injury. 

I am fucking terrified.

This last month has been a haze, more so than the last seven months of corona quarantine. I hurt. I hurt so much and in so many different weird and annoying ways that I've stopped bothering to catalog them and just go for the pain meds. This is unsustainable. I worry about my liver and kidneys and stomach lining and worry about the things I might be breaking while I've numbed the lot of it away. 

But also I worry that I will never get back to a "normal" again, where partner dancing, climbing on art, swinging a hammer, doing things with my arms, just generally being strong and fit, is really possible again. I'm staring down the barrel of a lifetime of "pain management" rather than healing and relief and I am trying so hard to convince myself that that's a life worth living. It's so hard in the middle of all of this, when we've all lost so much, and when the mitigations for the pain could compound the loss of leisure.

It's been hard enough this last month when I really want a tiki cocktail for dessert, trying to recall how much tylenol I've had and if I should just skip it. And the comfort-sugar cravings have come on in force, which sucks because I got to see quite plainly in the MRI how thick my subcutaneous fat layer is now. 

I can't focus at work, writing hurts my wrist, I worry that reading makes my neck issue worse, and I've run out of internet that I want to read. Politics is a cringeworthy grind I'd rather hide from, climate change is real and the heatwave here is about to cause some folks on my list to get their power cut to try to prevent another firepocalypse, and I'm finding that I really just want... to curl up somewhere... and wake up six months from now.

But first I have an 8am orthopedist appointment, God help a night owl.

Two cards down

Another interpretation of The Tower is the human spine - the ivory tower. The Tower is a card about... structural failures. Let that sit with you a moment. 

Then let me tell you that about 18 hours after my last post I was sitting in the ER (alone, due to covid restrictions), because after twelve days, the neck and shoulder pain was getting worse despite flexeril, then valium, then robaxin, which did absolutely nothing but make me groggy. I got an IV of toradol and another baby dose of IV valium, and a handful of prednisone. I also got an XRay and CT scan, all showing absolutely nothing out of the ordinary with my rib, collarbones or shoulders, but showing "osteophytes" and disc thinning in my neck, which might be why this keeps happening.

Just in time for Halloween, here's some skeleton parts

Prednisone is magic. I woke up the next morning feeling better than I had in weeks, in sickening parallel to a grotesque politician I could name. (I have not yet gone on any all-caps Twitter rants however, so I think I'm doing better than he.) But the dose is a tapering one, and the comedown is apparently predictably terrible, and now on day four, it feels like it's um, starting.

I now have an appointment for an MRI and a neurosurgery consultation. I'm a bit freaked out about what all this means. I'm not better yet, I might need surgery(?!), I haven't started physical therapy yet, and along with that I still haven't gotten the final billing for the allergy testing and CT imaging for that earlier this year, so adding an urgent care visit, emergency room visit, and three more imaging types to that sounds... financially terrifying.

But... While the DPO did not go well on day 1, nor 2, 3, 4, etc etc etc, yesterday, a full week later, I woke to the pleasant surprise of having sold some stock at my lowest acceptable price. Today, as recompense for the failure on day one, I was allowed to sell some more at a slightly higher price (regardless of the actual market price). It's not a lot of money after what I'd been hoping and dreaming of, but it's also not nothing, and it's not the end of my holdings either. 

It feels both like, and utterly unlike a windfall; both sudden money that I didn't quite plan for, but also money that is shaving little flakes off a chunk of my life that I stored away like pemmican in a cellar; it feels like the Little Mermaid watching her voice float away, like Wesley watching years drop off his life in that torture machine. It is a piece of myself that's gone now, and it didn't do what I'd hoped, but at least i got something for it. One way or another though, it's an ending to something that's gone on for years, and its decay will hopefully bring some fecundity.

(I mean, it also feels very much like not-a-windfall because no money has actually hit my account yet. And I worry that it'll end up being "enough" to keep up with the medical bills and not enough to ever get *ahead* per se.)

But things seem... to be getting a little better.

Another long-open tab

 I forget to write among all this chaos. I think I can be forgiven.

On September 23rd I woke up somewhere around 5am because of a searing burning pain in my neck. It's developed into another rib-subluxation-spasm like I had in March/April 2019, except this time I'm trying everything I can to fix it fast, and seemingly, in vain. Seeing a chiropractor *that day* didn't help, because the muscles were locked up and holding it in place. Seeing him repeatedly didn't seem to help either. A week later the doctor prescribed PT and massage therapy - I was able to get one hourlong massage and the next availability is October 13th. The PT place hasn't called me back and I'm at something of a loss about how to find any more massage therapists who are open for business again.

I'm in pain, my right neck, trapezius, shoulder blade, lat, deltoid and upper arm are sore and in spasm, and my lower arm has shooting pain and some numbness on the ball of my thumb. And the best I can do for all of this right now is to take drugs to numb the pain so I can sleep, and hope that the muscles will stop spasming. 

For anyone counting, this is day 11. I took all last week off because of various Things, which is what I'd meant to write about when I first opened this tab in September.

My acupuncturist, who has this terrible habit of trying to push me into letting her treat more than needs treating, said this feels like an emotional injury and for once I have to agree with her. As she was working on the axis of the knot, I found myself sobbing. Not because I was sad or angry or scared or in pain, though I was all of those things, but because that's apparently what's bound up in this muscle/spine issue.

The Tower and Death had been chasing me in my readings for the last few weeks, and I was beginning to be really truly afraid. I put my earthquake kit near the back door, because the Tower has specific meanings particular to California. I wrote up a basic, not-very-professional will. 

But it is impossible to know which of the things in the last two weeks either of these items refer to, because there's a lot:
- the (finally!) public offering of my first startup, which was not particularly successful, which suffered greatly from technical issues and has yet to net me a single dollar; 
- the first house we found in six months searching that we could see ourselves living in, and which we put an offer on which was not accepted;
- attempting to resolve interpersonal poly friction with a mediator-therapist and being rebuffed for weeks;
- the still-aching loss of a promising secondary partner;
- the twinge of nihilism that warns me it might be time to start looking for a more fulfilling job;
- the continued California fires;
- the lack of vacation and subsequent burnout exacerbated by said fires;
- the shitshow of US politics;
- the particular developments of the inmate of Walter Reed;
- the continued ravages of Covid in the US, just, you know, in general;
- climate dread.

Today the air cleared enough (AQI of about 70) that I felt safe going down to the beach again for some fresh air. This year has been about teaching us, the hard way, how much we took for granted; the ability to travel internationally; the ability to see friends; the ability to touch those who aren't within our own households; the ability to travel locally and enjoy the forests; the ability to eat and drink food we did not prepare; the ability to eat and drink outdoors; the ability to go outdoors without protective breathing equipment, and the list goes on and on and on...

I experience a sort of release-of-grief each time we get back something that's been taken from us. The first time I stood in line again at my favorite coffee place, I found myself weeping under my mask and not quite understanding why. When my favorite Indian place still delivered, it was the same. Seeing the farmer's market continue, the adorable English tea room nearby open, eating outdoors at our favorite pasta place again, I wept. When my favorite ramen place reopened I sobbed. When I heard the Parks Department would continue building the ferris wheel for the Golden Gate Park 150th anniversary I broke down in tears again.

I am holding all of this grief because there is nothing else to do with it, and it does appear that it is damaging me.