My infusions are booked for this month 🙂 I am very lucky to still be able to get Rituximab. I have had luck with generic chemDMARDs but I am very nervous about bio-similar biologic DMARDs. I had bad responses to Humira and Enbrel so it’s a concern based on experience.

But I am and I’m prepping myself. Mix of relief and nerves.

I managed to press my velvet guards for my red and black Cleves gown yesterday to try and work out how much I need to cut for the narrower border. I definitely need to overdye velveteen to match. It’s not easy, that crimson red simply is not available. It is a vibrant cherry red in bright daylight, a crimson under incandessant. So I may have to just overdye my existing fabric to match.

Crimson would be very appropriate and I have some really nice dye. I just need the courage. I have not had much luck for the last few years with my costumes, so it really is at the point where I’m a bit scared to try anything.

I have been stalling making the corsets I need to work on projects as my hands and body are just not okay. And my hands really don’t like coutil. Pinning or trying to get a hand needle through for basting? My neuropathy and fibro combine in unexpected ways- I can’t get enough of a grip on the needle, but then being stuck by a pin is excessively painful.

It was probably the biggest warning that fibro was on the way. It started several years ago and I tellingly dismissed it as “hyper sensitivity.” So.. yeah.

But I realised that my Elsa Ice Gown has a fully supportive inner bodice. It needs it due to the weight of the rhinestones.

But it’s comfortable. Very very very comfortable. It’s two layers of stretch charmeuse cut high in the back, with padding for shape, and I happen to have the exact same fabric in a different colour already cut to shape.

So I could if I wanted make a corselet just so I can start trying on my projects.

Oh, I also realised I can probably also use some chunky open ended zips for my corsets after all. So I’m feeling a lot better about the prospect of working on my stays again 🙂 Some need lacing holes though. I really should go on an eyelet and rivet hunt. I keep stashing them where I shouldn’t.

These first two are Broadway examples, the third I have listed as for Ever After, all are about support and ventilation while reducing weight and bulk of fabric.

Anyway. I have a bit more of a plan now. I really want to finally finish my fluffy 1878 gown a la Tissot, so I really need to get some fit going on while also figuring out that excessively plunging back neckline- the sheer layer will help support but it is very low.

But I’m also taking inspiration from plates so I should also get all that sorted as well.

For those wondering do I really mean research or am I web surfing… yes researching. I’m trying to find evidence of any sort to suggest whether a veritable treasure trove of images can be trusted, or not. I’m not looking for evidence to support me, I’m looking for any evidence. At all. I want to just get the context.

One of the problems is that I have tried all the variations I can to find any mention of a specific manuscript. There is a fabulous paper, open access, but I can’t check their references. And I really need those references as it might help me brute search even more terms.

My collection of NRW images is pretty extensive. The only black holes are, weirdly, in printed images. Cologne was printing so much you would think it would be easy. But I have very few files of prints I can say for sure are from Cologne.

This source is amazing. Really amazing. I might have managed to find one figure that is 100% based on an in situ stained glass window. And as a portrait.

I’m trying to find sketches and anything related to an artist who has been suggested as having a hand in this document. And it’s very difficult. Until I can find a specific set of preparatory images I’m left with my own collection of thousands of images. And as the bulk of my evidence in support of the images being accurate is of allegorical or non-region specific styles?

I need to find a stash of sketches asap or somehow luck into new digitisation of paintings so far not recorded. I deep dive bildindex so often that I don’t think there are images I’ve missed.

I got all my enamel in progress pieces in one place and I really do like them. The daisies are a little too big compared to most of the gold “edelstein” pieces but they are a good size for one “bendigin” example.

I really should start making detail crops of images to show how many seem to come from one jeweler, or from patterns that are fairly restrained to the region.

But I have managed to get some substitutes which is nice.

I’ve started work on my frog needle case.

I am pretty sure that is actually a contraction of needle worked, referring to the technique to cover the body, but I am using some left over green velveteen.

I resized it, lined it in shot silk taffeta (beige crossed with maroon) with little red patches of wool and a tongue of wool. It’s less hamburger like now 😉 I’ve sewn up one side vent, but I think I want to undo the bottom piece to lie a bit flatter and to sew the little leggies between the lining and shell fabrics. That will mean having to undo all of that piece as the padding is quite heavy.

I have re-threaded the ties for my purse, so yay. And I am going to copy the pattern for my antique brass frame, I got rid of the rivets a few weeks ago so I’ll also need to create a matching plate for the inside.

The current purse really needs little flower shaped tie controls, that may have to be laminated russet then dyed black. They will also need beads. I’m trying to work out if they need tassels as well as that could be be able to finally use a laurel gift to make them. Okay, so tassels for fabric bags yes, also the ties need to be tidied a bit, and maybe I’ll need to double the ties to make them use friction to stay tied as I think is part of the original design.

My knife case I think can be covered in the brass stampings from the brass daisies I’m using for my jewelry- the petals are actually petal shaped foliates that look like laurel leaves. So that works very nicely.

Finally I am also reshaping the.. well I’m calling them “latzen” though it’s not entirely easy to know if that is correct. Most Cologne “mutzger” sit on top of a cap with a decorative strip at the front sitting on top of that. But in a few examples of the highly decorative kinds, and nearly all linen, there is a shaped piece between cap and the distinctive arched hat.

I have an idea of how they were made, but I need to be a bit bolder in the curve I have cut that frames the face and around the ears. I have one set on my head cast right now, and I can see where I need to clip a bit more so that the piece sits right where I need it.

My gold brocade covered “mutzger” also needs the cover re centered at the front as it’s about 7mm off which makes it look very off centre.

And my linen one. Well I have realised how hard it is to keep linen clean while working on it, so I think I will need to remove the linen shell, stitch it to shape, and then make it possible to take off and wash it.

So while the linen headgear really does look quite austere and fits in our idea of modestly, they actually are much harder to keep that pristine unless the linen is separate and able to be washed. The veils are a lot easier to see, but they can also obscure what is happening on the solid pieces.

And then there is the distinctive strip of sheer linen at the front. It is indeed a strip, not the front edge of a veil. The ends can be seen pinned to the back of the caps in nearly every depiction of them. I need to make a couple of them. I wound up buying organdy instead of sheer linen as it is much closer to the effect seen in art.

And I also am going to remove the decorative strip on my fitted cap so that I can wash the cap/alternate between several as that also makes sense in terms of maintenance of the pieces.

Today is also lovely and sunny so I will be able to get enameling again today to bake all my pieces in a day or so. We had to replace the bench top oven, so I’m also getting familiar with the temperature.

Slowly I am working on my linen and jewelry pieces for my Cleves wardrobe, but there are some running repairs for clothing that also take time nd effort.

So what I’m doing is matching repair to project. So if I am handsewing/basting fabric for a project I’ll set myself up to sit on the floor and stream tv and do as many short seams as possible and get at least one seam of repairs as well.

If I am painting/gluing then I’ll set up ditto in my studio.

It seems to work, even if it is very slow. It’s always tough but it definitely gets tougher over time rather than better, which is you know, totally on brand for chronic illness.

Everything I do is in mind of the future so that I can balance life now and five years from now, a decade from now. Which is obviously ever evolving and never really predictable.

So, to my gabapentin but also an excess of vitamin B as a fizzy tablet drink because even if most is not absorbed some might. Even a little is better than none.

I’ve been trying to rehabilitate my hands and keep then safe for sewing. I have ulnar shift, in which they rotate inwards and on top of my hand. And yes, it does indeed feel exactly like it is.

There are bones so eroded they are difficult to identify by shape in xrays.

On top of nerve and muscle wasting (leading to tremors) I have fibro which makes pin sticks excessively painful.

So I have been doing some low risk handsewing of linen with linen. I had to remove all pins and use my nails to press the seams open and fold the seam allowance under.

From there I have been trying to at least have even stitches even if they are not the tiny stitches that would mark a linen piece made 50 or more years ago.

So with a few days of success (for me- like 40cm of stitching in the morning and maybe 20cm in the afternoon) I have the confidence to actually try to work on my corsets. Putting in eyelets makes me nervous but I will use all my tools to make it safe as possible.

In hindsight the sensitivity to pin sticks was advance warning of my Fibro. I knew my blood tests were getting unusually painful, but I put it down to scar tissue from all the tests. But I didn’t associate it with the pain from pins sticking into my skin when I move projects.

So I have also been doing rough basting of projects to let me sew them properly later.

I’m slightly overwhelmed by my WIP storage as it really is A Lot. And I started them all when I was in a better position in terms of time management around fatigue and pain. But I have also been trying to avoid prednisone so I’ve been a bit more restricted in that regard too.

Okay. I think I can face my corset supplies if I can get the stash reorganised.

It’s also sunny so I’d like to paint some more brass flowers and check my make up tidying.

Of all things, all my glorious over-ambitious projects left waiting…- I am trying to get my linen items for my Cleves wardrobe.

It’s still high stakes, just not as high stakes as say… cutting my cloth of gold. Or using maths to work out how much more lace I need to buy for my Marie Antoinette dress (I used a lot of circles and scale…)

But it meant that at midnight I decided I needed to find the ruffs and two partlets already made. So… I found them, but it was midnight. So hooray for that.

I have in the past made two very sheer linen ruffs, with hems of maybe at most 2mm, and both very full indeed. And both have disappeared. So I’m not keen on investing that amount of hand work into something unless I can sew my neam into the very fabric of it.

Anyway. I now have all my linen in the lounge, and started a catalogue of items. The idea of having a full wardrobe is definitely behind this. I have hats, but not enough veils, I have gowns, but not enough sleeves.

So. Yay? No, yes, yay. It’s been a year of barely relenting health stuff out of my control, so it’s a good thing to feel the wish to work on fairly mundane items.

But I also have a shopping list for socks and singlets in the real world anyway.

I was pretty prepared for most of this pandemic and how I need to adapt but I really have wound up spending so much time trying to stay up to date and managing my response that I just have so very little progress on anything.

So yesterday I started to transfer make up into little pots so I can create little go boxes for if and when it’s time to be out and about more often.

TBF this is something I may not be able to do.

In theory I can do videos but then again they take so much effort solo (I do nearly everything solo) that I haven’t done any. I might see if I can set up in my studio to do any kind of recording.

I’m reworking a number of my Northrhine gear to be nice and vibrant like the original paintings, so am low temp enameling some pieces.

After a few years of internal struggling of what my laurel means, I realised I should separate the leaves from my NRW collection of pieces and create a separate item. This is in keeping with how members of different orders in Cologne wear their collars- very widely over the shoulders- so I’m satisfied with that approach.

Off to the baking paper I think.

And find scraps of fabric to make face covering.

This has been the public message here. It is genuinely life saving, it’s not simply feelgood.

Immune compromised people are pro-actively protecting ourselves all the time.

Do you know who we are most likely to be infected by?

Someone who loves us.

Someone who cares for us.

Someone in home to help us.

This means a very complicated relationship with how I regard people I love and respect and trust. Ultimately compassion to and by me helps me get through a health issue with my best chance.

The kind of tracking of symptoms, and travel, people are being asked to do now is what I have to do all the time, and it frankly is difficult. We have been told for most of our lives that this is hypochondria, by family, friends, media, fiction, social media, and medicine.

And yes, even more so to people like me, and yes from medicine. We tend to underplay our experiences so as to not wind up being dismissed as attention seeking.

So that takes practice by everyone.

So yes, kindness will mean someone will come forward for testing who might be scared otherwise, who could then save my life. And so could save the life of someone I love.

To quote Chidi: “Simply put, we are not in this alone.”