Self-talk

T-minus three days to surgery. I keep waiting for some Sign(tm) that I'm doing the right thing, and in the absence of such I keep second- and third-guessing myself. I am in enough pain that I have lost the ability to reason about the pain; my brain keeps going back to the following: 1) Did I do enough to try to fix this without surgery? 2) Is my pain really *that* bad? Aren't there people worse off than me here? 3) Since this happened to me, don't I deserve to suffer? 4) What if it goes wrong?

As a mental health exercise, let me break this down for myself and see if it helps.

1) Yes. This first happened in March of 2019 and you toughed it out for a full month before seeking help, then you spent four more months getting back to 99% functionality, all without knowing that this was going to happen again. There were two more levels waiting to go. 

2) Yes, and this is bullshit medical-care-rationing thinking. You are in pain and thus you deserve treatment; you don't need to compare your pain to anyone else to justify getting it. You're having trouble with word-finding, you're having trouble with names, and focus and concentration are beyond you. These are all signs that things aren't going to get better on their own. Sure there are kids starving in Sudan or something, but nothing practical you can do is going to change that, and putting everyone else who suffers before your own care is not actually helping them or you. This is a trauma response. Putting others before yourself here will not make you a better person, win you approval or accolades from a distant theoretical authority.

3) No. This is the body you were granted for this incarnation. Part of the experience you're having is that of watching Time change it. Remember how you felt exactly this way when you got your first crown molar? How ashamed and grief-stricken you were that you couldn't keep your teeth in exactly the state they were when they first cut through your gums? And now it's nothing? You won't ever be the same, but Time was going to ensure that for you anyway. It's just not quite the not-the-same as you'd originally envisioned, and while it's natural given your upbringing to grieve that somewhat, don't let naturalistic fallacy swallow you whole. 

4) Even if it goes wrong, it will help. UCSF is world renowned for their Spine Center, and they're where everyone else goes when some other doctor fucks up their procedure. If Something Happens you'll be under the best possible care to correct it, even if it means more surgery. You're (relatively) young, with no serious underlying health conditions, and should heal quickly. You have a team of professionals on your side, and (gross that I have to write this, thanks 'Murica) the money to pay for their care. You've been in pain for about the same time that they expect you to need to get back to normal; that's more than enough time sacrificed on the altar of needless-pain.

This body is my vessel and I need to heave down occasionally. I will feel joy again, someday.

Real Fear

I am so scared.

After much wrangling with insurance, we're doing a 2-level fusion at UCSF. Anthem wouldn't approve a synthetic disc along with the fusion, so we're doing less to spare my mobility, on the promise they made that if I still have pain they'll approve a disc in a second operation. December 15th is my surgery day. That's a week away. I have an LOA set up with work. I have all the moving parts figured out and scheduling bits in place. And I am scared.

I am so scared I've been randomly breaking down into sobs, for minutes at a time. Hyperventilating, ugly cry, scared. Started turning on music when it happens so I don't freak out the downstairs neighbors. We're at four times today. Nothing like snapping-to and finding you've been sobbing on the kitchen floor in the middle of the day while your lunch cooks to make you doubt your own sanity.

What if I'm doing the wrong thing? What if it doesn't work? There's so much that's out of my hands.

I have never been scared on this animal, bodily level. I'm sitting in here piloting this meat suit through daily tasks while it shakes and sobs and I have to tell it to blink more so I can see what I'm trying to do and I am just... is this still a healthy level of compartmentalization? Am I doing this wrong? Is this breaking me? (Was I broken beforehand and just hadn't quite noticed?)

I'm reading through the pre-surgical instructions and putting them on the calendar and I can't stop crying. 

I can't imagine this hurting less. I am grieving the loss of my, I'll admit to this vanity, my pretty neck and collarbones. I'm scared that on top of this, it won't help - I'll still be in pain (in more, different pain) and will have to get a second surgery anyway. More scarring, more pain, more loss of the OEM parts I had.

And then some part of me recognizes that I am *in* pain right now, and despite my brain's insistence that I'm not in real pain, not really, I actually am, and that's why this (including the random crying jags) is happening and that's why I need this surgery. 

So I took one of my baby tramadol and I am going to go to sleep now.

No going back

 I've been consuming a lot of historical fiction recently, discussing it with other nerds, and all of it points to one thing:

You cannot heal to-first-principles what has been utterly broken. You cannot un-burn a forest. But you can use the ashes as fertilizer to grow something better.

We were talking about Babylon Berlin (which is beautiful and dark and amazingly well done, well worth watching),  and the fall of the Weimar Republic, and I think it has some strong messages for the incoming administration. 

We can immediately reverse policies, but if we blindly put things back to how they were, given the damages done in the world in the intervening time we're going to find perverse incentives in record time and it'll be egg on the face of everyone involved. We should be taking this time to see what stagnant patterns have been torn down by this disaster of a government, of a pandemic, of a year, and see what we can build back, better.

I am heartened that that's the actual campaign title of the incoming Biden administration. We cannot make America great "again" for it was never great. But we can take the things we've lost and use them to fertilize a greater good and a greater equality.

The world has changed

All I knew
This morning when I woke
Is I know something now  
Know something now I didn't before 

I woke this morning to the sound of a conch shell somewhere on the block, blasting three times. In prayer or thankfulness, I believe. It wasn't until a half an hour later when we heard honking and cheers that we woke up enough to roll over and look at our phones and read the happy news.

It's like rising from beneath a suffocating load, after four years.

In November of 2016, I alighted from Caltrain into the arms of someone who did not understand why I was so upset, but who held me and told me (wrongly) that everything would be okay. Even my LJ ramblings from the inauguration show how terribly bad things had got so very very quickly.

Now I feel like I need to make a to do list for him, for them, for the world, of all of the things that need to be fixed and set right.

We need more voter re-enfranchisement; protected voting rights; to un-gerrymander. (This last one we could legislate algorithmically, I feel.) We need to write down and make a legal requirement all the niceties of presidential behavior that we took for granted: they must disclose their taxes, they must divest themselves of their business assets, they must have a transition plan and team, they cannot appoint cabinet members with a clear conflict of interest, they cannot appoint supreme court judges with less than six months left in the term, they cannot. We need to undo four years of batshit insane executive orders: roll back halts on diversity training, stop making statements about the preferred architecture of federal buildings, disallow ridiculous tariff changes and begin negotiations with our trade partners. We need to put into constitutional law some of the items that have been otherwise only legal precedents - marriage should be a right not a forbearance. We need to fight COVID, rejoin the Paris Agreement, tackle the giant holes punched in our government and begin to mend our relationships with the rest of the world. We also need to mend our relationships with the rest of America - stop demonizing the red states and their voters, and make sure that their concerns are heard.

Every item that concerns me, there's a plank for that. (But the anxious doer in me is still making and revising to do lists that nobody in power will ever see.)

But... it's a welcome change from the nonstop grind of pain and fear of the last four years.

---

In other news, the third time was the charm. My appointment at UCSF's Spine Center with Dr. Berven left me with a sense of relief so intense I cried in the office (and alarmed the poor student who'd been working with me - she thought I sounded so in control of everything, hearing that I was looking forward to a surcease of intense pain was a surprise. I'll take it as a compliment.) We're going to try to get my insurance to approve a hybrid approach: two titanium discs between C4-C5 and C5-C6, and a single-disc fusion between C6-C7. This means we're putting a plate only between the vertebra that are functionally between my collarbones, and which normally have the least range of motion. The hope is that, if approved, this approach means that I'll have almost-normal range of motion when we're done.

The surgery pre-op reading is terrifying. I guess I need to write a will beforehand? Any neck surgery is scary but damn, "we could nick your carotid artery and you might die" is... eye opening. There's always the possibility of nerve damage, but also damage to the tendons, to the vocal cords, the trachea and esophagus - difficulty speaking, breathing, swallowing. There's a possibility that it goes poorly, and that I come back in six months, a year, five years, to get it re-done. There's a possibility that it doesn't work, and they have to do something else. I'm scared, but also... I know myself enough to know that I'm getting bored at my current employer, and if I jump I may not have insurance, or good insurance, where I land. I'd like to have this taken care of.

Some part of me feels like I ought to get Lasik after, and just be the best modern cyborg miracle I can be.

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.