Kate Violette

@kateviolette.com

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Multipurpose nerd. Engineering manager currently waylaid by a complex illness. On a mission to watch every Katharine Hepburn movie.
🏳️‍🌈 they (🇬🇧), elle (🇫🇷)

Currently residing in Portland OR. Always a Mainer.

Blog at my username!

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Reply to

Emily Johnson

Yeah, I used to be honest when people would ask me how I'm doing, that I'm seriously ill and don't have enough help. And the typical response was "gosh that sucks I'm sorry" and not "how can I help?". Forever will be weird to me people don't think to help out.

Reply to

Emily Johnson

It's beyond the pale. 😣 I really wish more people internalized the whole "the political is personal" thing. So many people on the left who talk a good game about solidarity and all that, but where's the actual practice in their daily life and relationships?

One of these days I'm going to write a blog post on help and care, and the number one thing I'm going to highlight for people who haven't needed care before is: "Let me know if you need anything! / Just ask if you need help with anything!" (or similar) is always, always, worthless.

I have said to so many people and so few have heard me, or at least acted on it, that the reason this tumor did so well is it 1st thing took out my ability to seek care. I still can't. I need care offered but people kept saying they loved me and I should poke them if I needed anything. I can't.

It's merely a phatic expression the speaker says in order to protect, for themselves, their image of themselves as a good person. (I could go on about this but I should get to sleep 🫡) But the tl;dr is:

If you can tell someone is having a hard time and needs help, taking a moment to consider what they might need help with, and what you are willing to offer, and see if there's any intersection there, will always be better than "let me know if you need anything!".

Even if you miss the mark, you've expressed something(s) you *would* be willing to do, and the person needing care might keep you in mind to ask for something similar in the future.

Reply to

Hannah is resting 🟡

"people mostly assume someone else will handle it" Exactly my experience, too, if that helps you know it's not a reflection on you personally 🩵

Also I've found anyone that says "let me know if you need anything!" doesn't really mean it, and has no idea how exhausting it is to play cursed guessing games "let me know if you need anything!" "ok! can you do X?" "no, but let me know if you need anything!" "ok, can you do Y?" "no, but let me kno

So as for people telling you to "just ask", I doubt it would've gone any better with them if you could have asked! (I'm not someone shy about asking for help--or at least I didn't used to be, now I definitely struggle to ask for help, in a way that feels deeply unlike me.)

Reply to

Hannah is resting 🟡

holy shit, Hannah 😮‍💨🩵 I'm furious on your behalf It shouldn't be this hard to get care, and yet 😕

Reposted by

Kate Violette

The Katmai National Park bear cam is HOPPING tonight!

Brooks Falls Brown Bears Low powered by EXPLORE.orgwww.youtube.com Enjoy a secondary view of the brown bears as they fish for migrating salmon at Brooks Falls. This camera is situated slightly lower than our Brooks Falls Bea...

omg you weren't kidding!

Reply to

Eileen Clancy

Oh no!, I'm glad the overall outcome should be ok and am hoping your spirits are doing better soon too. 💜

Reply to

rahaeli

omfg of course, yep, of course 🤦

Reply to

long cool woman in a white coat

I appreciate you wanting to look out for me. I've skimmed the headlines of the link and there are no new topics for me. (There are also a few factual errors I saw, such as Lyme being impossible to transmit human-to-human; afaik there are documented cases of mother to fetus transmission.)

I know we're just internet strangers, but fwiw, my educational background is in physics and applied math (b.a. and b.s. respectively with some graduate level math work done also). This doesn't make me a doctor, but it does make me someone who generally knows a strong medical paper from a weak one.

I have deep regret over not pursuing a Lyme diagnosis years sooner. And the only reason I didn't is because I know most people think anyone talking/asking about Lyme is crazy / to be ridiculed / etc. (I know my profile says I live in OR currently, but it also says I'm a Mainer; I grew up in ME)

When I was 29, I suddenly went from regularly running 10 mi runs to struggling to even run 2 mi. That doctor told me it was just aging. 🙃

When I finally found the first doctor who knew anything about ME/CFS, (but was not a Lyme specialist), her assessment was "I don't think you're a slam-dunk for Lyme disease but if you try treating everything else and three years later you're still sick, I would try treating Lyme disease."

Anyway, it's now 3.5 years later and I regret not pushing more on my instincts sooner. So I do appreciate you looking out for an internet stranger!, but know there is more pressure for people to *not* consider Lyme disease than there is for people *to* consider Lyme disease, and that harms too.

Reply to

kate

The short answer is I've been working with a fascial counterstrain physical therapist who specializes in complex health conditions including tethered cord. She's been in the business for a long time so she knows what she's looking for when she's working on someone and how they respond to treatment.

If there are certain things that improve but keep regressing between appointments, those are signs. As for easier to point to symptoms that are suggestive:

- weird urinary issues (I often have to stand to finish voiding the last 10%) - "reversed" punch biopsy results for SFN (it's worse proximally than distally) - persistent tension/issues between T6-T8 (per my PT this is *very* common with TC)

The more subtle ones are things my PT picks up on like vascular tone. Veins collapsing (like even partially, just not being optimally operating, I mean) can be a sign of tethered cord -- a stressed CNS can send wonky messaging to vascular tissue.

Reply to

Firk

Yeah and racism in policing is way bigger than just a single US state, is what I mean to say.

Reply to

kate

for TC: minimizing bending over or even, some days, sitting up keeping the spine as straight as possible, basically (without stressing yourself out over chasing perfection)

Reply to

kate

I do know the base-of-skull miserable feeling; it isn't always correlated with PEM for me. I haven't experienced it in other parts of my spine.

(also Kate unsure if it's helpful meta-data but my providers strongly suspect I have tethered cord and I may puruse surgery for it we have more or less ruled out CCI low-level CSF leaks may be a thing for me but infrequently, currently?)

Reply to

Firk

That's a bizarre takeaway from this, my man

Reply to

Kate Violette

Or other H1 blocking antihistamine! Doesn't just have to be zyrtec.