So. I’m now on triple therapy for my RA. And it really brought home my reality. Best results for people with RA are the biologics. They not only work better on the A part of RA but more than that are the only treatments to save our lives. Oh yeah, prior to biologics our life expectancy plummets because RA attacks our hearts long before erosion of joints (heck that might even be true for me even though I had an acute onset.) But biologics by their nature (being biochemicals) wind up triggering our IS into getting rid of them. So we still rely on what amounts to low dose but continual chemotherapy to protect them.

But I’ve been getting so much break through inflammation and needing steroids that I’m now on two chemDARDs to support my biologic. One of which might contribute to neuropathy (but I asked my Rheumatologist and it seems unlikely- thank goodness) and the other will mean I have to have my eyes checked frequently.

My feet broke out in even more capillaritis/purpura and I thought it was worse.. but! I might be lucky that like the other two forms of skin involvement I’ve had that it seems to move in a wave- so new inflammation which is bad but previous injury seems to heal. The blood vessels near my toes do seem to have healed anyway.

And my wrists aren’t looking great. My ulnar has deviated further- I’m having a bit of a break from my embroidery because I know from- mumblty- years of living with this that injury or overuse will trigger inflammation. Yay for refractive disease.

Anyway. We’re not giving up is the point of this.

(Callback Lord Flashheart.) I’ve *finally* consolidated my edited files for my costumes. It was more difficult than it should have been. I have not yet folded back in all the resized photos I used for earlier versions of this site when data was so very expensive in hosting but also for visitors. But it’s finally paying off. It’s been so overwhelming at times that I’ve been not taking the time to really appreciate each photo for the record of my progress, or those I love, because it is just so very much. Going costume by costume though makes it easier for those moments of joy.

I have up to 20 copies of some files. Some of which were recovered so have errors, some of which were copied directly from corrupt drives- the very last action I’ve taken on them yes. And you’d think there would be some easy way to figure them out. But there isn’t. And this is yet another example of how I as a puny human with munched up hands, with fatigue an pain, can process these files faster than any software currently available.

No, I literally can scroll and sort and search so fast that my software can’t keep up. And my PC has a hard working graphics card, all memory slots.

I need to edit and publish a post on how bad it’s become trying to search for what I need to- but I’m not a fan of AI. I’ve seen it used to repeat tropes about Anne of Cleves- when you are very familiar with not just the sources but the quality of records of them? It’s painfully obvious. But that’s not the position of most of us. Also at least one of my images has had this treatment so it’s a handy easy way for me to reconstruct how it was altered. It’s so bad.

But I’ve also been tackling fibro grinding down on me- I do want to make a post about that as I’ve gone through quite a journey but found some tools again. Not perfect, but it’s giving me a bit more time and focus.

So this is a summary of what I’ve been trying to write about and just not having the spoons to do so. Spoon theory has had some really interesting expansions that work better for me than the original- which fair enough was very good to describe how rapidly fatigue sets in.

Anyway. I’m got my folders starting to be easier to navigate, uses fewer spoons, and so it means I’m able to really focus on what I really want to work on over the next few years. I need to restore some costumes, actually finish others. Tearing both Achilles tendons has been so disruptive. So disruptive, but now that I’m feeling real progress I want to write about that- now that the coda will end on a positive note.

And I keep going through working on my sites so I can do some major content updates/upgrades.

Twenty two years of digital photos taken by me, by my friends, by my family, by my communities means a heck of a lot of shared file names. Unfortunately for much of that time we were very limited by numbers of characters so best practice of using a timestamp just wasn’t default. And then on top of that I wound up getting to 9999 photos within three years and so my camera just… went back to 1. Not even with a new character at the end of the prefix, which it really should have.

And oh boy does my OS hate sorting by date let alone date taken, but loves date created. Which really means date copied but it uses the same convention for all files. But that date created can also mean date copied to a different drive. Which, again, means it really should be date copied.

And a lot of photos have had exif data removed anyway. And with my OS making it incredibly easy to overwrite (not even delete so you can find them in the bin, nope, overwritten) by automatically selecting that *and* making that window come to the front, *and* any key as enter, but then making it more tricky to keep all versions of a file. Those ticky boxes are tiny, again, compared with the ease of totally destroying files it makes it overwhelming to just move files.

The weird thing is when I look into ways to change the default action? The top results are users who do not want to follow best practice which is always least destructive. So that’s probably why there are no options, but I doubt they reflect what most people actually need given they are people with logins on these forums.

I don’t do that, because I expect most of these answers to be in online user guides to be honest.

So I started looking into programs that could automate some of this for me. But. Even if I can find one that can search by image properties, exif data yes but by pixel, and they too default to destruction as your primary use. It’s really hard to find one that can do that and let you select what folder they should all go into and let you keep all copies with renaming.

Heck I want to add a suffix with the dimensions to the files that are no longer full sized (that’s on me and my early use and much smaller harddrives) and there are some programs that can do that.

So at this point I’m still faster than tech. Because I have my memories to recognise what dates a lot of these photos should have. But I’m also so much faster in my research files. And if you add in time to learn and configure those programs, I’m still faster.

Anyway. I’m pretty exhausted, I keep wanting to post because all those years of memories has really made me want to write about them. But I’m physically just wiped.

But wanting to make sure I have credit for photos taken by other people is a big driver. Even when I’ve had permission to use them, I want to update all my links to follow best practice- I’m trying to live up to the same kinds of expectations I have for tech companies yes.

Trying to not feel sorry for myself! Opportunities are coming up but the utter shambles left behind from me losing earlier ones means I’m scared to pursue these new opportunities. If I’m honest though I just had one of the worst health crashes in recent years. By tearing both achilles tendons- and winding up having EDS finally in my record as a likely contributor- I wasn’t able to properly calculate how to recover ort plan. Injuring one was fairly easy- I could still walk but carefully. Both? My entire general health has just collapsed.

I can finally safely walk around the house. When I do heel raises I can feel two things at once. One is the obvious- loss of tone. That’s fine. That’s just being persistent. But I can also feel the same kind of sharp pulling that indicated pushing too hard and reinjuring myself. It’s also been a cold winter, so warming up muscles before stretching/moving has meant something else.

RA is a bit like having an an acute injury but also like disorganised healing all at once. For me ice makes my hands so much worse, but heat helps. I suspect it works because heat dilates small blood vessels and so inflammatory molecules get flushed out. Ice contracts those same vessels preventing inflammatory molecules getting in. And with the petechiae in my feet responding to oral prednisone and the high likelihood of having EDS that makes blood vessels fragile? I think that’s why for me heat helps even when my hands are hot.

Ice on my tendons whenever I retriggered the injuries did make a difference. So it may also be that whole disorganised healing issue: there aren’t just one set of inflammatory molecules. In RA it’s like an injury yes, but also like an infection. Either way I’m just glad I actually noticed the difference.

It’s hard to recover/maintain health with chronic processes, which is anything lasting more than 3m which is wild to me as someone with … well.. many years of both RA and fibro. But it’s made easier if you have a treatment plan.

I’m also missing Carlo so much. IG and my phone both remember the #SpottyCatsOfInstagram tag I used for him, and when I tag Fluffy and Missy it comes up. My heart breaks every time. I used a few tags for Boo that seem to no longer be recognised as frequently used. And that’s hard too.

I’m genuinely consolidating my research though. Which is where these opportunities come in. Three of my papers could fit in two conferences. But I’m scared. Both my tendons and petechiae rely on prednisone, actually my fibro does as well, and it messes with natural cortisol responses to stress.

And I can’t just avoid the stuff because what happens externally might also be internally.

It really messes with you when you fail other people. Failing myself pales in comparison.

Language shifts. Catchy phrases especially. We tend to use our own experiences to fill in the gaps when we first hear them. For me this term just asks a simple question: does this make you happy, or is it a burden?

I’m at the stage where I’m reliving all kinds of memories going through photos of my costumes. There are tens of thousands of these photos, well including copies, including all the cropped versions from my websites and SocMed. But it’s now a joy. Finally.

I think my tendons are finally at the point I can start to rebuild rather than just maintain. I’m able to go up on my toes, especially in my indoor shoes. This means walking will be a joy again and not time away from my research and projects and full of stress about whether I’m going to injure myself again. I did get carried away with walking on my tip toes but even that has settled.

And my gateway project, my Pink Diamonds restoration, is also making me happy. I over engineered the support but even that was fun to fix. And this photo reorganising means I have the history of what I made and how and that’s really exciting. I might have to hunt through my stack of cds (oh yes) for scans because quite a few images were resized for 56.6kb landlines.

So yes, after just back to back issues I’m feeling much more relaxed about where I am right now.

It wasn’t. May as well have been for the endless loop of “your harddrive is failing and it’s all your fault” advice online. Ditto advice that you just store data on drives not use them, which is… something. Ditto the goal shift from having a back up in the cloud and physical to now something like five redundancies- way to embrace inbuilt obsolescence. Nope. It was just the last connector in my power cable to it. The second to last one is fine. Silence. Speedy. Luckily the manufacturer builds in a beep that power has been lost but it sure does sound like a failure. It didn’t seem to cause any errors, it just meant each time there was a waver in the supply it had to retry.

So that’s brilliant. I did though learn all the ways both the OS, and browsers alike keep accessing it. Oh yes. The latter is ostensibly to check for software conflicts, but that’s pretty invasive. I caught it live only because of the noise- and the noise is due to multiple attempts to read/write. I doubt it would be easy to spot it otherwise. So that’s good. I was worried my PC was on her last legs, I even have an entirely new set of power cables.

But I’m just so physically shattered by the stress. As in biological stress. Sure other stress, but think about how you physically tense core muscles when you’re trying to focus and trying to be alert. There are superficial and deep muscles alike and for me these are the muscles that make my fibro start yelling at me. Very loudly. Well maybe not the muscles themselves but all that fascia around and between and particularly just under the skin do. Yes, it was assumed the fascia only transfers pain signals, doesn’t actually generate them. Turns out it very much does. And that matches my experience better than if fibro was in muscles.

That or yes, it’s heavily in the smooth muscle fibres in skin. These are the ones that you can feel when you get goosepimples. When I get them now? It hurts. I can feel them slowly contract. It’s very creepy. But it’s probably also why even before I get to that point that a warm shower hurts. It feels like having a warm shower after being sunburned. So when people talk about the pain of fibro, yes, it includes actual burning sensations, not the burning of inflammation- though I get that too and prednisone can quite often knock that back. It’s not supposed to. But it does for me. Maybe because my RA is active enough that knocking that back is upstream of the pain of fibro.

And while I know I’m not actually burned, it doesn’t actually stop the pain. And a hot shower is really beneficial for my RA and fibro for the same reason it’s beneficial for anyone. It soothes sore muscles.

So here I am. With the source of stress gone. But now left trying to recover from it.

Still. We are here and it is now. A quick fly by post, now off to have that shower I’ve put off. Hah!

But if I can get my body to stop yelling at me I can actually work on those embroidery projects I keep having to put off. Pink Diamonds, Elissa, Elsa, my pearl work.

Yes, still recovering, prednisone taper continues. But I’m also able to appreciate what I did achieve over the last year. It’s huge. After repeated harddrive failures, I really do have a good one, it’s stable and so my catalogue of portraits of women of the North Rhine is back under control. I’ve added some categories for broad date ranges, I’ve removed the stained glass window and print depictions (just from the categories) as the art forms have distinctly different aims and so need to be handled separately. It’s excessively difficult in the UI of media to handle these changes so it’s a bit incomplete too. Had my site not been picked up by google for high rankings I’d have totally changed all of it. But we are hear and it is now.

And alongside this of course I have individual inventories as well as research of those who have gone before me.

So what about my paper? I’m trying to work that one out. But I let go some of the stress because while working my way through I translated a nifty two page article that was the first of a two part series except I can’t find the second half. And it was written in the 1950s.

He said what volume it would appear in, but I couldn’t find it.

I don’t think I need that second half, I got the answers I needed, but I’m feeling less stressed about leaving unfinished works up on my sites because I’m far from the first to be heavily invested in the art of this time and place and where my output may not keep up with intent.

I’ve also got multiple sources about the language of 16thC Cologne and as I worked my way through that I was also able to let go of some more stress: even people who study that sum it up as it’s complicated. And it is. I know it is when I hear contemporary spoken word now, but what’s interesting to me is that I found myself almost with the same accent when I started just trying to get different spelling variations to make sense.

I also really pushed my theory. Really hard. That’s what you do of course. You defend it, and the only way you can do that is to follow up every piece of evidence that contradicts you. There is a repeated claim that I only just was able to trace back. This is in part due to the very low quality scans of books that are foundational. Sometimes a bad OCR layer is worse than none.

The claim is important, I’m frustrated I didn’t spot it myself, but it doesn’t change my theory. It just means there were connections lost and gained right up to my focal time. And it means I can happily quote everyone who shared it. And I can do so by starting with the transcription of the founding document, and what each writer has interpreted it to mean, and what it means for my work.

I’m still shattered. Refractive disease means resistant to treatment. All treatment, including diet etc. You still do what you need to do, obviously, it’s just hard to keep going and not just cry.

I’ll write about hat in a separate post. Because I haven’t cried, I’m staying positive, just a bit impatient.

I’ve been quiet because I’m trying to recover from triggering a relapse of my RA. The petechiae in my feet and my Achilles tendons injuries are at this point clearly connected as they calm down with high doses of steroids. So does my fibro and pain where I have a little narrowing in my spine- so they all were ringing alarm bells that just turned into a cacophony.

The problem was I had a pulse not even three months ago and wasn’t on alert to notice the gathering warning signs that another flare was on the way. I did have to use heat and darkness for longer than usual but it was gradual until it was half my day. But then it pretty much fell apart and now I’ll need to recover from the steroids too because they do suppress your own cortisol production.

RA treatments do so much but immune cells are particularly good at by passing interference- just consider how much bone marrow we have, not even total body irradiation and Hematopoietic Stem Cell Transplantation is long lasting. That’s how powerful it is. It was fascinating and horrifying to study at uni, so you can imagine what it’s like to now be part of the subject.

So you keep running interference, you keep tools in your toolkit, and you remember to be as forgiving of yourself as so many people you know you’ve disappointed have and who continue to be forgiving. First out of respect for that grace, second because it’s how you recover because stress makes it take longer, third so you remember to keep offering that grace in kind. And fourth so you do keep trying.

It’s a matter now of making sure I don’t push recovery nor get disheartened by how long it takes, because that’s truly the most difficult to manage.