|| blog ||

making

I have not had much luck with making anything for the last few years. Multiple health matters that ultimately lead to a deep undermining of my confidence. So I have started to work on a very fun project that doesn’t have much in the way of high stakes and it seems to be working.

I’m making a fluffy frock. This is my own term for a style of frock that appears in mostly Northern Renaissance art, in both portraits and historical or allegorical figures. There doesn’t seem to be a positive or negative connotation, and they are depicted with a texture similar to images that are mostly likely pleated linen items such as sleeves or aprons.

At this point I only have enough sheer fabric for the skirt and fitted but puffed sleeves and just enough to cover the bodice. But hopefully soon I will be able to justify 4m of fabric for the sleeves.

These figures are Judith and Salome respectively (the foreground figure in the painting could be Salome but the figure with the winged headdress seems to be directing the other two figures.) And both are by Niklaus Manual. Only the painting seems to use a fluffy frock.

It appears I have not created a gallery for fluffy frocks. So…

I’ve stuck with the very clearly pleated examples as they are treated to a degree that makes it clear they are made from a fabric that is somewhat light and creases even in a pleat, possibly pleated using stitches and then pressed, then the stitches removed. This is not all I have in my files but the most clear.

Further to these are the images depicting very full sleeves that are finely or coarsely pleated, again in portraits and representative art.

There are images that depict either sleeves or full loose single layer garments in a delicate peachy pink (usually) but not pleated, so there are a few more leads to track down in that regard.

So far I’m using some medium weight linen to support the body and am using a cotton voile because it’s what I have and it handles like my sheer linen anyway. I do know that the different linens I have been lucky to have and to handle suggest that I could possibly simply starch this at a later date if I want to try for some nice crisp pleats.

I will try to match fabric if I can for the full sleeves as one of these portraits is of Sibylla, sister of Anne of Cleves. And I’d love to make that at some date.

a new year

It felt strange to wake up today, in a new year, but any moment I feel at ease is a moment I let happen, and be thankful. So I’m looking at a day of gently encouraging myself to think about my projects with a bit more kindness and appreciate that they are not easy, but they are fun, and I have a really good base to all of them even if progress is stalled on some due to needing a few more supplies (tape casings for the Marie Antoinette hoops for example so I can store them safely between wearing.)

My entire North Rhine wardrobe is getting an overhaul, so they have been pulled apart to have necklines, hems, and linings changed.

This is being remade into this, a bit earlier than my now 1540s wardrobe but this fit and neckline is in range.

I have never gotten a nice photo of this dress sadly- as it is for summer and it’s frankly hot and stuffy and this photo is very distorted by whatever my camera was doing at the time! But I do think the tube sleeve look works. It will require a fair bit of careful planning for the lack of a CF seam in skirt and bodice.

This stained glass portrait may depict something else, and I seem to have dropped the reference. There are big gaps I need to fill in in this timeline to be fair.

If this seems familiar it’s because this figure is from the Quentel Modelbucher but was also copied into other modelbucher in other languages. I have all the copies of her, and other women clearly in dress of Cologne.

These tube sleeves are also worn by children of the same decade.

As I have so little of this red left I’ve tried to overdye fabric to match, but can’t. so I’m making the liste deeper (the wide guarding at the hem- often fur, but in some cases velvet.)

And my original inspiration portraits.

It is hard to tell, but this portrait definitely shows the list is higher than her knee!

And you can use the narrower guarding here to work out how high this liste reaches as well!

This gown is proving to be very hard to sew, I have used a very plush velvet for the guarding. So the entire skirt needs to be basted in parts.

And there is some piecing that may need to be very carefully aligned as well.

I’m also tidying all my accessories, and rebuilding my linen gear. I think I need to adapt my Lengberg chemises a bit as they do a lot already, but I think I can adapt them even further to suit my area.

transcription success

It just needed to get rescanning and a different PDF reader.

I will webbify it once I have a rest. I may have to go A SWTOR-ing (Along The Mountain Track) tomorrow. Or actually midnight 🙂

final post of the year

I was going to spend some of today transcribing (lists of headwear) or playing SWTOR and I can’t.

My entire life didn’t just pause this year, it went backwards in many ways. And in ways I have not been able to recover from.

It’s possible to be grateful for what I have, while being so aware of how very different it could be. And will be at some stage again.

Inspiration

I’ve not had a great time finishing projects this year. I keep switching to my short and/or easy projects but when I can’t finish them, I wind up in a worse headspace than before.

If I’m struggling to cover the legs of my frog purse, I say to myself, how can I possibly work on my pearlwork? How can I possibly put the lining into my gowns? How can I possibly figure out how to break down my larger projects into smaller when I have utterly failed so much in so many ways?

The secret was to put my jewels back together for my Anne of Cleves. This set has taken me so long to paint (24 hour drying between layers, then they needed baking carefully) and to even find and afford all the parts.

But they are done. 36 in total. I can make two more, and I think I will.

It took two days to wire them, in short bursts. I think what made it truly work is that I was able to wire the flowers first, and each one was a distinct unit through both passes of the wire.

So I’m also now able to look at the rest of the jewelry today (the big daisy pieces, and the rainbow collar.

But I also have been using a few days, with more days in between to be fair, to cut skirts for my Juelich dress and Cranach dress.

And I did use my understanding of the extant garments to pattern a really nice toille for the Cranach and today I made a toille for the sleeves that I really like. The actual painting is frustratingly two shades of oranage! But I’m making it in pink because it does look spiffy in pink.

The two dresses use nearly the same pattern. I used my half circle skirt in gores to cut the front of the Juelich dress, then overlaid the “front” and “back” (they are the same shape) so I could get another 8″ at the side of each waist which then created I think anouther 16-20′ at the hem.

What’s really handy is that you can then pin the bottom layer of pattern and use the upper to fold to match the shape of the pattern that flows over the edge of fabric. And then you can either pare the excess back or extend it based on how much fabric you have left over.

I did mess that up for my first pass, so I got a little extra to cut a new skirt front for the Juelich to be as full as the Cranach (but the direction of the pleats will give it a very different look.

And so I have enough from the original skirt panels to gut the massive sleeves of the Cranach.

how am I- it’s complictaed

I have not been very able to do much but it’s not through inactivity, but also it is. One day can cost me a week or more, and that’s exactly what happened.

It’s one of the more frustrating aspects of the particular form of Rheumatoid Disease I have- it is set off by activity, the very thing both medicine and our social narratives says is good for me.

Don’t get me wrong, inactivity has a toll. But my RD is never fully in remission. The kind of remission I have is chemically induced and maintained, and never actually gets my inflammatory markers low. But as there is a feedback loop between damage and inflammation it can be a very tricky balance.

On top of that I have nodules. These are essentially the same process but inside my skin. They do not start with damage and I have not noticed a pattern leading up to them.

But they start the size of the head of a regular pin, then they expand like the crest of a wave, staying the same width but stretching out as the center collapses and forms a scar.

They last for years too. I’m lucky they never get so big that they need surgery, they do eventually collapse, but I think I’ve finally got one on my scalp.

Tomorrow I get a chest xray. This is related as nodules can appear in lungs, they can also appear on other organs, but it could also be other lung involvement because yay.

“In fact, it is estimated that 1 in 10 people with rheumatoid arthritis will develop ILD over the course of their disease, making it as deadly among people with RA as congestive heart failure”

https://www.arthritis.org/diseases/more-about/what-you-need-to-know-about-ra-and-lung-disease

Two of the biggest risk factors are irrelevant to me, which again makes it very difficult to get diagnosed and to figure it out and to treat.

But it’s not likely an x-ray alone will be able to pick up on anything. It might take a CT scan.

https://radiopaedia.org/articles/rheumatoid-pulmonary-nodule-1

“Pulmonary rheumatoid nodules are rare and their prevalence ranges from <0.4% in radiological studies to 32% in lung biopsies of patients with RA and nodules.”

https://casereports.bmj.com/content/2015/bcr-2015-213083

So that is a massive leap between xrays and biopsies, it could be down to the severity of symptoms- I am pushing for that CT if the xray doesn’t show anything but only because the limits I am dealing with are now intolerable even while I am quite tolerant of a quiet life at home.

So for it to be intolerable for me means it’s something I am putting at the front of my care, rather than keep telling myself to wait out another month. Especially if I am seriously considering my chances with a biopsy, as further to this is the fact that surgery is something I avoid due to risk of infection.

But I need to have the xray first and I will be trying to point out my nodules as I do have a nice little collection, and the radiologist will then have an idea of how small the ones I grow are and that if I have any in my lungs they will also likely be itty bitty things.

Anyway. I was not able to walk even a few houses away until late last week, not due to inactivity, but inflammation. I had to have prednisone a few days in a row before I could consider trying again. Luckily I seem to be slowly regaining a bit of the endurance I lost. That is what I mean by inactivity still taking a toll. It doesn’t matter that I’ve had to lower my activity in order to protect my joints, my muscles still are muscles and need their thing.

But I also know to not push this. All it does is maintain inflammation while also burning through resources making fatigue worse.

It’s a basic principle of recovery though. You don’t force yourself into more harm, you do what you can, while you can, using what supports you need to, and build up to more activity.

Today I did walk and my feet are hot, most people can understand this, but my hands are as well. So again, it’s not at all logical based on much of what we know. But is absolutely on brand for some variants of Rheumatoid Disease.

In spite of all this, I’m mostly staying ahead of stress. It’s not easy. And I very much did have a few days of grief because of all of this, and it needed more than a decision to feel better, it took some additional health management steps.

I think I’m okay

I think I did indeed manage to time both pain relief and steroids to prevent a flare, and with minimal side effects. Though yeah.. prednisone makes me a bit.. over active so I wound up not sleeping until about 2am.

But today I have cut the replacement skirt panels for my Julick gown meaning that yes indeed my favourite Cranach frock is back on the cards!

Judith with the head of Holofernes

But in pink and black. Yeah. Very excited.

I am still pacing myself. I have to. I need to get my book updated as I update patterns.

Super nifty to find all my Spanish tailoring patterns ready to go.

But I have a little more tidying and record keeping to go.

feeling what?

It’s so very difficult to write about my chronic health without either dinging pity, or the flip side of “you are happy you are cured!” And it’s not that I don’t have very bad days, and very good days, but that overall how I am coping emotionally or mentally may or may not be directly connected to what I am dealing with.

It is true though I have many fewer “good” days than just not ideal, and then I can have really bad days follow good of just simply not great.

Our bodies are extremely complex, as too are our own experiences. I have very clear refractive RA. It should have started to “burn out” a few years ago. Instead that’s when I started to develop nodules- making it extremely important to reduce any risk of inflammation as nodules are associated with poorer outcomes for joints and organ damage- and after that psoriasis- another not ideal situation- and fibromyalgia.

A lot of more newly diagnosed folks have much faster access to the most recent therapies and while I never want to push someone to a therapy they are nervous about I am absolutely thrilled those are now real options. Because they were priced out of being my options, and I know for a fact what a difference they would have made, for me. Just being able to try them, and rule them out if they don’t work brings you closer to a truly personalised treatment. The faster we get to that the better.

So if anyone is reading this, or any post of my not so ideal day, and feels scared, I am sorry. If you are experiencing side effects you have every right to make it clear what your line is and what you will accept. Not all side effects are givens, hold onto belief in yourself. And if you have someone who can be an advocate with you, please do especially if you find yourself not being carefully listened to. Sometimes we can have symptoms that we can describe for our experience, but it may not be in medical texts framed the same way. This is when our medical team will try to fill in the gaps- often getting it right, but not always.

I aim to share the positive and the not so positive because life is complicated. It doesn’t get less complicated with overlapping health issues. It can though bring into sharp relief what matters most. And sometimes knowing someone else doesn’t have the outcomes that can be promised also helps- even to just to stop blaming ourselves over what we can’t change, and instead save that energy and use it on what does make our individual lives better.

I think we all want the very best for ourselves, but it is very different for each of us. In a non medical example the only moisturiser that works for me is a very cheap supermarket stocked item. But my cleanser? I have to very carefully budget for it as it is expensive but it actually cleans my face, not scratches it, or irritates it. And there is entirely one oil by one particular country that my skin likes- and not when put into their other products. And that includes my own facial oils which my face hates.

And I know this kind of restriction affects folks in different ways including diet, exercise, and other therapies.

This post brought to you by me deciding actually I did need more pain relief and more steroidal anti-inflammatory meds today. I hope tomorrow I can just rest as the prednisone is making me feel a little too good. I know it is protective but it also does make you feel amazing on top of that. So as the inflammatory effect wears off.. there may be a delay in how I feel? Not sure. Not willing to risk it.

But all of this, to bring me back to the opening, doesn’t leave me feeling bad.

The single biggest stress is not being believed as often I do have to take precautions like this to travel to assessments. I couldn’t travel without the intervention, but the intervention will mask what I am trying to get assessed, and so on.

No but I have some social events to look forward to and I think I have settled on my art projects to make. Including maybe not making an Elsa Mantua but something more SCA appropropriate. I can find another fabric for the mantua- it will use all the silver lace though.

plans and activity

One of the really difficult aspects of both my Rheumatoid and Fibro is that my very specific layers of therapy is not easy to understand or in fact like. I never share to tell people how to treat themselves, only that we all have very different experiences. What helps us all is believing we have tried what we can.

I defy expectations in very uncomfortable ways. There is no link to diet for me as I’m not allergic to anything (always good to reduce inflammation of any kind and that is especially true for food- and there are other aspects that do have an impact and vice versa) but activity can and does trigger it. Which goes against almost everything we are told.

It’s not that I can never walk, or never do anything, its that my limits are quite quickly met. I can’t walk every day, and in fact over the years how far I can walk has shrunk. Again, this is the opposite of what is expected. If I walk even a short distance say three days in a row I won’t be able to do that for more than a week. So every other day, and making best use of that time is much more effective for me. Still not a cure, still doesn’t undo damage.

But that’s because even on double therapy my inflammatory markers remain elevated. It’s very frustrating as often I can do a specific task but then pay for it for anything like a day to a week. Which makes it very difficult to plan yes!

Today I ironed some fabric and I’m a bit sore. In a few hours though that’s going to be inflammation in my jaw, elbows, and hands. So rather than keep going until that point and being utterly unable to do anything for the next few days (and on each of those days I can cause more activity by not respecting the even more constrained limits on those days.) I am stopping now.

I am going to turn my electric blanket on (yes, I am also “weird” that heat reduces inflammation, always has*) and ease my back muscles right now while I have a chance to use minimal interventions.

I don’t use much prednisone now, and codeine is a one off to reduce my chance of a fibro flare.

Whoops. Actually I will as that is very likely indeed.

*Cold constricts small blood vessels, heat dilates them. So there are many theories as to why there is this difference in patients, and RA tends towards if/then in general. If someone is Rf positive they are likely to be anti-CCP negative, and vice versa. If high inflammation, then low erosion, and vice versa. If you have sub-cutaneous nodules, you likely have organ involvement, and if you don’t then likely no organ involvement. So this hot/cold difference might well be another kind of marker.

avoidant behaviour

This year has brought a lot of stress, and with it has been a need to stay not just up to date but be proactive. So this has taken a lot of time and focus.

On top of that is a long trail of undiagnosed and uncontrolled fibromyalgia and after a few years I have started to be very stressed by what normally is my joy. It started with me trying to push through fatigue and making decisions in cutting and sewing that have had to be undone or left me wasting materials, through to now where I am putting off or avoiding working on my projects as I have learned that I will make mistakes.

I have been working on this. I really have. But it’s not a simple situation so the solutions are not simple.

I can’t stay in one position for long so I do indeed switch tasks. But then that doesn’t let me settle in. I don’t really have long enough to transition between skillsets.

And if I move from say tidying files at my PC to a little lightweight hand sewing, to cleaning, by the time I come back to tidying files I may not remember what system I was trying to sort by. I need to rest a lot, so that separates each round even further.

So by now I’m full of doubt.

Doubt also has a habit of seeping out of context and into everything. So yes at this point I’ve started second guessing everything.

Oddly though I’m still somewhat positive. I just wish I had more time in which I could work on every aspect of health I need to.