Happy Rheumaversary

I went from literally throwing myself across the stage to not being able to move overnight. Quite the thing to have gone from studying immunology to feeling the full power of it. Essentially my immune system thinks my own tissue is an infection and that tissue is literally everywhere. Nose to toes. Joints, tendons, ligaments, organs.

In RA, the synovial tissue becomes markedly expanded, with a striking increase in cellular infiltration. This leads to hallmark “pannus” formation at cartilage-bone interfaces; pannus can be composed of macrophages, FLS, leucocytes, plasma cells, and mast cells (14), and behaves like a locally invasive tumor, mediating damage and erosion formation in later disease (15). 

https://www.frontiersin.org/articles/10.3389/fmed.2019.00045/full

I’m celebrating surviving all of this.

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Wow

Last time I wrote about wanting to make a mantua with my taffeta it was quite hard to get really nifty views. Still true for a few but my word! The Shrewsbury mantua! It looks brand new. And all the wonderful joins are now recorded. And what’s really exciting about these early examples is that they were developed outside the work of tailors.

I think we can recognise how the rules dressmakers/milliners had to follow in not cutting seams to fit- the curved darts do this- but I think it’s always why you get the wedge panels through the sides. Tailors still used side seams, with classic extensions that go to the selvage then over. They had centuries of records of how to do this.

Milliners/dressmakers did not. But they probably had a lot of experience with linen goods.

And the diagonal to straight seaming might be something to pin experiments on.

Because this was all pretty new.

I was only supposed to be looking in my files to really have a bit of fun and recover from a very heavy week of sadness and stress.

I’m actually going to make my Elsa mantua.

I just got way too excited about all this new imagery!

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Could this be a positive post?

Yes it is! Despite some weird OS update stuff (I got the welcome screen but then couldn’t find any new updates) and explorer breaking, again, I’ve actually been doing some really nifty work finding art in places not previously recorded. The only downside is it means I have to go searching for “Flemish” art to find even more.

But I kind of need to stop where I am because I need to write up why I’m so sure about two images in particular- because it’s not “just” what I know about frocks. It’s also what I know about how artists worked in different forms. It’s even in legal proceedings some artists undertook to recover their own sketches. One of the ways you get influences in art is through the kind of theft this reveals.

In many ways the reason there is so much work to do is to not believe there is this rich level of information in depictions of frocks.

So if I can write up why these depictions are so easy to spot then conservators and historians with access to the art can continue that work.

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heart broken

I’m sad to say I am not able to present my research at the IMCS. While I seem to be on the path to recovery in regards to my PC I’ve just been put so far behind that I haven’t been able to practice. The reality is also that regardless of whether my CNS issues are fibro or vanilla RA it does mean I have to practice more and put in place many more stress relievers.

On the plus side my work isn’t in vain. When I put my paper up for consideration I was mostly working with a negative space around Anne of Cleves. Much of what I could do was really limited by the quality of images and a lack of open access written work. It’s been further hampered by the curation of catalogues that remove depictions of women. Luckily the efforts to digitise collections has rectified this but it’s taking time to fold all this new information in.

The last year has been a particularly bad year but I kept working on this project because I do believe it’s important not only to people interested in Anne or even in North Rhine fashion, but more widely in how much we don’t know because the information is so broken and separated.

But now I need to take a break. Missy seems to have had a fright overnight so she wasn’t on my chair this morning and she’s only eating outdoors. Fluffy is now back to being in my room, which he shared with Carlo until we needed to protect Carlo by keeping doors closed while he was in my room or also when he was in the lounge. So we’re all a bit out of sorts.

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I had to deregister at ICMS- K’zoo

Today my PC decided to break down. If I’m very lucky indeed it is resolved-ish (there is still a problem in booting.) But spending all of my good hours on it today is not recoverable. The unpredictability means it’s unfair to keep the organisers waiting. It was going to be hard to pay for registration anyway but today was the day I would have.

Unfortunately I can’t even say “well I can put it towards a new PC” because I am still paying for physio and I need to see the dentist. I can put off glasses for a little longer as my last set of glasses were too strong and I’m only now fitting them. But that’s not a good solution.

If none of this happened I was on track. My health limits how many hours I have to spend on everything so while I know my health would not let me fit in the hours I’ve spent on this over the next week it is still my PC failing that has put me in this position. It’s something that would be an issue for anyone who can’t just rock up to by a new PC on the same day. Because that too would have given me a good chance of recovering.

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ouch but also okay I think

Disability tax is real. It’s also both obvious and not obvious at the same time. The tech fail I’m experiencing is in and of itself no different than for anyone trying to do what I am doing. Where the difference lies is the cost in terms of percentage of time and percentage of health and very much as a percentage of pain.

I have only a few hours in a good day to do everything that would otherwise fill the 16 hours of day sans 8 hours of sleep. So take 16 hours and try to do it all in what, 4? You can’t scrimp on health so that 2mins of tooth brushing is now more like 10mins.

So far so easy.

Where things get harder to calculate is pain time. It’s not like 1 hour in pain is like 4 hours otherwise. Or rather it is but then you have a cost for many days after to include “recovery” that is less like recovery and more like recalibration. Sometimes I can do half an hour of pain and it be like 2 hours with no cost days after, but that’s rare now.

So where I’m heading with this post is that I’m in the last few days of time left to know if I can do K’Zoo because I have two days to pay registration fees but the next two weeks might be almost entirely tech rather than actual research (*). If I had 3K spare for a new PC with specs for research (think gaming x data centre) it would be fine. But I don’t. So that cost comes out of my time (remember at least a 4x cost) and health and pain.

It’s close enough that I might have just a day or two in which to really know for sure. And again, that amplitude of cost doesn’t include bad days. I don’t even have space for one (4x) bad days. They tend to have a long tail. So one bad day is more than a week in both actual time and disability time.

(*) I think there is actual memory leak. I turned off all “visual effects” other than thumbnails and yikes. Explorer still ratches up private and working set bytes (because everything works within explorer/desktop) but instead of crashing I’m just not getting pdf thumbnails then no image thumbnails created and instead defaulting to icons. It’s difficult to work with but for what I’ve been doing it’s enough to have made enough progress I might be able to switch different effects back on. But oh boy it also physically hurts my eyes due to font rendering being so messed up. Again, browsers operate within explorer so turning off visual effects messes with that.

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Oh boy- my Anne of Cleves paper just got weird

Well. I knew I needed to tackle my folder of secondary images for Anne of Cleves at some stage. When I share the file names I created for them? You get an idea of how this is crushing my will to read. Me? Tired of reading?!

So we have “no.jpg” “reallyno.jpg” “lolno.jpg” for line art of Anne in costume books. It’s important as the bigger picture is revealed and it tied to my first paper: The Public Gaze. This refers to our tendency to be lead by what people say we should see. Recently the Louvre shared incredibly high resolution images of their portrait that has finally been cleaned.

You’ve think they unearthed new information by the way people are reacting to it.

For me she’s exactly who I have been looking at for 20 years, her smile was always there, her eyes looking directly at us, her cheekbones. What I appreciate now is the very specific pigments revealed. The blue background and the red dress are not a surprise, the specific tones are appreciated.

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worse to worst

It turns out my harddrive is indeed failing, it’s down to 56% health according to HDS. I’m incredibly lucky that I have so many back ups. Platter drives, solid state, internal, external, the cloud. But I’m just unable to progress my research until I have a stable boot drive and that means I can’t make any mistakes in the meantime. It used to be very easy. Format a drive and boot from the mobo.

I can’t afford the time, health, and money this is taking to fix.

I really can’t.

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oh things got worse

Turns out I managed to buy one of the now know bad hardrives (c2021 through 2023) from a brand that used to be really reliable. If I’m very lucky it’s not physical bad sectors (well there will be some) but logical caused by the firmware it was shipped with, and which has been updated since, which means I could potentially erase, reformat and reinstall.

Having backed up folder by folder over three days I found around 50 genuinely affected files and they all seem to be photos in my 2014-2018 folders. And they seem to be good on my earlier backup drives.

That timeframe though means I might have lost photos of Boo and of Carlo and of Fluffy.

That I seem to have safe back ups on three internal and three external drives means I’m in a much better position. But I will need to buy a new (smaller) boot drive so that I can just experiment with the flawed drive.

But this is eating to my grieving time, and my research time. Sorry that choices in how photos are transferred, modified, and saved changed was your choice OS but now have to move thousands of images into a more reliable year> month folder hierarchy. It’s also not my fault you can’t preserve daylight savings and indeed UTC settings so that I’m never sure if the newer or older date is accurate.

It turns out my OS and SSDs are not meant for researchers. I’m apparently acting far more like a data centre than home user. My pc build though was for gaming so I’ve been really protected for a long time though. Such a good build. The motherboard hates one brand though which is why I switched in the first place.

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I’ve been using my pc all wrong

Apparently despite the ability to use 1-2T harddrives you can’t actually fill them or windows breaks due to having too many files (the cache and databases are limited. So this basically means you can’t do research that involves careful curation.

I’m literally triggering RA activity as there is no “safe” angle for my shoulders, elbows, and wrists and this has taken away from my ability to do anything. The inflammation is different to the state of my achilles but the two mean all four limbs are dangerous to use. Luckily k-tape seems to help my wrists a little. At least makes them feel more comfortable. Unlike splints they don’t need taking off each time I wash my hands.

So to the good k-tape, and let my PC back up to my new harddrive. Oh look still crashing.

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