fly by update

I am very sore. I have posted already that I was relying a lot on pain relief to be able to go out. Well, as I knew… I am now paying for it.

Fibro while not understood does indeed make the nerves over signal. Pain relief works to damp them down, I don’t get full relief but it shuts it down to a level where I can think and move.

Rheumatoid Arthritis on the other hand is erosive. Think of it as chemical (immune system) and mechanical (wear on exposed joints.) I actually need the feedback of pain to intervene in either the chemical or mechanical erosion. Enough to know what to do, but not so much I can’t think. It’s tough as that line changes without any real ability to predict it.

I think I have a bit of both kinds of erosion that I did not notice while I was having daily pain relief. Certainly the joint between thumb and wrist feels like it’s immune mediated based on my 18 years of living with both. It’s also a classic erosion type for RA. I have ulnar drift and carpal tunnel issues already so I’m not surprised. I probably need it investigated in more detail.

I get regular xrays but they only look for changes since the last, they don’t really state the obvious or history. It might take a bit of an extra review of the last four or five to really spot them. Like how my xrays from 2001 and 2009 show change (dark spaces between bones is good, no space is bad):

Where I am currently really hurting is on the left of each image (where the long bone of the thumb meets the a small trapezoid (first in the row of small bones) meets the scaphoid( looks like a banana in my original xray now a squished and jagged pea.)

There are many kinds of pain but this one feels hot and new.

It’s not easy to see in the photos but now more of the top flattish end of the radius (big arm bone on the left of each) is easy to press through my skin. It is very painful. And I manage to hit them (one in each wrist) fairly regularly which is one reason why I wear my splints much of the time.

The ulnar (skinny long bone lower right of each photo) feels about as bad as you can imagine if you spot that the end has rotated and shifted in towards my thumb. It affects my elbow as that twist changes stress on the other end as well.

Splints are insulating though so in summer I wind up taking them off, like now.

My feet are also ringing the same sort of hot pain, so I may have to see if I can find some bandages to support them (ankle and near my toes.)

So even though it’s warm (though overcast) I am going to toast myself again on my electric blanket as high heat directly on joints helps: it dilates veins and arteries so blood flows faster and so sort of washes those inflammatory molecules away and high enough also works to sort of numb which is also helpful- really good to get the shower to be just hot enough on the back of my neck to numb that region to help me start moving in the morning.

visible disability-ish

I’m not out very often but I have been wearing my splints a lot more and now that people notice them I get asked what happened- because one hand most people can come up with a few theories, both hands is a bit outside of the usual.

I’m honest always, both about my RA and that it’s not curable and so far I think people have been understanding. I still get “you’re too young” I usually just say I was 25 when it started or that there are children with it as well. Just enough that maybe someone who is interested will think about it in terms of other people they may meet, or have met.

In person I’m quite upbeat in tone about it but I do know that in writing it’s very hard to convey that.

I used to use smilies (yes smilies, that dates me quite well) so much that when they started to get converted to little gifs I started to look like I was super excited all the time.

Then I stopped using them so much and it made me look angry. I wish I could get back in the habit in informal writing but I find I can’t. And I don’t know why.

Don’t get me wrong. I do smile in person, I do laugh. I think it’s just that typing now is more of an effort. Effort is physical, mental, and emotional and so I get to the tired stage in each a bit more quickly and so I think that’s why I have not really updated this blog as often as I should.

Anyway. I’m currently having trouble with the joints between wrist and thumb on both hands. It is a bit troubling that it hurts to pull my blanket over me as it’s not really possible to replicate that in my appointments but it may mean a short steroid taper. Been avoiding them. But I’ve also been relying on pain relief for the last month so I’ve been masking any symptoms of changes.

And this is unfortunately why even if I have tackled the pain for a short time it’s not something I can do very often at all.

tired but inspired

coming out of a bit of a rough patch. It’s very hard to explain except as a result of simply running out of physical resources.

But I am working on the biggest parts of my new site: all the dressmaking books I can find, all the trachtenbucher, and all the extant patterns.

https://www.thefrockchick.com/tag/historic-guides/ (for anyone not already familiar from facebook.)

I’m focused on open access where possible with links to books that have added information (Drei Schnittbucheris an example.)

I really do need to get my opinion pieces written up as well but having internal links means I can find the information right in my site.

Next up will be my big article on Anne of Cleves’ hat as it’s really quite a fascinating and it’s fairly unique even in the region. I want to explain way which means getting all the sumptuary laws up and also all the detail views I can of many portraits.

And all the modelbucher linked to- these are great for a lot of the goldwork in NRW portraits but the pearlwork is quite hard to match up. But that also means portrait by portrait, buch by buch.

more planning

My Sickening Ball gown has me a little stumped in terms of the hem. There will be four hems approximately 15m wide. I was going to shape the hem but the same problem arrises which is not just matching the hems but sewing them neatly.

I was going to just use horsehair braid but I may need to be a bit more cunning.

I might in fact grab some hem tape and press it to the edge of the fabric, then pin and press that together and then I will have a very firm edge to turn over again and press and then, turn it back, press and use the blind hemming stitch on my sewing machine. A long process but the fabrics are wobbly and do not play nicely without careful preparation.

Once hemmed I’ll be able to line the hems up, baste into sections and then work them all as one layer.

As to Maleficent I will be attemtping to get a 3D model of my headsculpt. The app uses my own phone to process which means being tethered to my PC but hey.

maleficent reworking

Okay so I am much better able to plan but I still have fatigue and my RA which means I cannot do everything I want. So in the lead up to the Sickening Ball and Armageddon I need a few twofer wins.

And that means working on my Maleficent horns, which were last left as a digitised form of my full head with sculpt. Well I have gone back to that and I am hoping to in fact get an app to take my headcast to make a proper digital form to sculpt on. Slight issue is that is is so much easier to use symmetry to build up evenly when a human head really isn’t.

So I now have blender back and it’s much easier to use though the UI has changed enough that help is no longer helpful, but it does have a boolean modifier which means I should be able to use this work with a cleaned and tidied 3d model of my head.

So I have downloaded an app to hopefully get a decent model.

There is another that is free but requires credits to export some models, though no real explanation if obj is one of the file types.


Working backwards:

What do I want to do in terms of paint? Well I will want something that will bond to the surface so that means the print needs to be in ABS not PLA.

So ABS also allows me to make the print more stable by careful use of acetone and it allows for a very low density fill with a solid skin.

ABS can also be heated to take on a subtle new curve.

Then I need to find where I need to slice the model- in order to make best use of the layering in an extrusion print. And to fit within the physical limits of printers. The horns are easy, the base is going to be tricky. Did I mention it’s going to be in three parts like the original?

While not needed in this headdress the holes in the base are there for a purpose as are the teeth (like a comb) at the front.

Anyway, I have the Christening Gown still in two pieces (train and gown) so once I finally get myself somewhere where I can test some Kryolan TV Stick I will indeed have a full costume and will then also be able to finish my sickening gown.My skin is fussy beyond words. It basically means I am fairly stuck with one moisturiser, one cleanser, and they do not play nicely with makeup. But I can get TV Stick to work, go figure. So I need to match my skin. Ahahahahahahaha! But I think I do know the tint I just need to try some on my face with my full skin care routine. Which apparently now will include Murala oil as the one and only oil I have ever tried that my skin will absorb. Everything else ever sits on my skin and wanders off. This doesn’t. It’s very exciting.

Yes the two costumes are related, I hope.

Sickening Ball 2019

I think I worked out how to do my skirt. To be fair it was an idea I had originally but shaped. Anyway. I can’t quite completely cheat and sew three layers I can at least baste and hold stitches. I really need some fabric pleated as well.

I have to be honest, the der Tod outfit probably fits the theme a whole lot more. So I’m having a a break tonight and will see if I can cut the layers needed for that tomorrow.

In theory each outfit would be a week. But I am really struggling with fatigue and with pain. I need to set some energy aside each day for exercise. I have so far managed three walks this week. But two of them were too far and I was struggling on the return trip.

But I have this week flatironed my der Tod wig, nearly got the hoops stitched (being tired means making mistakes which means extra work, which leads to more fatigue etc.) and I put gel tips on my nails and have tidied the lounge a bit so that is quite a lot given the sharp decline my health took last year. I’m still recovering from that.

hand update

I have not really been updating much as I’ve been having playing catch up and it’s because I can catch up πŸ™‚

As soon as my scar was healed I went back on my DMARD because my disease was getting a bit active again. So I am going to take it that yep I am still not in full remission and need to keep going. On the upside, while a DMARD sounds scary the ones I’m on have fewer side effects and long term consequences than the pain relief or anti-inflammatories I would otherwise need.

And it is long term. It’s been 18 years of my RA and I know what it responds to positively and negatively and while it is a constant juggle of rest, activity, diet, looking after other health. And often needing to change each of these as my body is particularly good at contempt of the familiar!

Anyway. So I did have my final physio session. I have been so good at stretching and massaging and flexing my hand that I have a bit more range of motion than I started.

So I need to do a few of these exercises for my general hand health.

Pain? Gone. Occasional tiny sharp flick if my arm is stretched just so. Strength is coming back and I’m getting used to my new weird tendons popping up in my wrist. It’s my one concern and is entirely about other changes caused by my RA. The bones the ligament attached to are so eroded I’m not sure what else attaches where now. As my surgeon got a good view inside my hand I can ask a few questions πŸ™‚

There is a bit of bruised sensation to he side of the scar, and the scar is still quite rigid put I can put a little pressure on to help slowly soften it.

Already the scar is folding in to my natural creases, the stitch holes are just a little more of a reminder but they too will fade.

A few days ago I wasn’t sure how I would go forward with my right hand. But the concerns are resolving regularly, so every few days there is a change, not so much every day.

Soon it’ll be down to a week to see change, and then a month, and so on. So right now I’m happy with my left hand but would not want this stage for both. But it’s still better than a week ago and so I’ll be better able to take about benefits once fully healed πŸ™‚

And of course I went into this knowing it was about prevention of future issues, not repairing.


Okay so two posts one day, sorry. But I think I worked out a way to work backwards from my outerlayer to support layers.

To figure it out I thought about the hem. So for a perfectly convoluting hem it’s essentially a series of circles side by side and C=2r(Pi) or the diameter times pi.

So a little over 3 times. So that at least lets me decide if I want to shape the skirt or be continuous.

Now I’m all about the shaped panel, I really am. Even circles upon circles. But I think the best justice I can do to this fabric is to use continuous lengths.

Which means I have just enough of the pretty top layer and will need as much in tulle. And I have enough for 3 layers of the less pretty but still ridiculous fabric. And I will very definitely need more of the netting, which I already knew.

So then I need to decide just how much support will be netting. I know I will need flounces and I need a shaped yoke to reduce bulk.

Luckily I have enough to start the foundations. Still trying to decide on body shape. I know what effect I want and it should be possible to do at home.

My left hand is back to being able to do like work and the fibro flare seems to be easing back (it was a not fun ride after the stitches came out, desensitisation is part of therapy and extra needed with fibro. My body is a bit in emergency mode despite not actually being in emergency.

Okay so new tag time?

plan for my Sickening Gown

I have been looking through the various Charles James archives and having a blast. I’m not working directly from his system but there is one gown that looks like it will work.

Much as I’d love to use my circle patterning skills I think it’s going to be more effective to use rolled pleats- as opposed to stacked, though I could switch from one to the other if needed. Though it would be a glorious challenge. I can’t really test the pattern at a small scale like I would want to but it might help with deciding where to have rigid support and where to have soft.

I am very hesitant about the body. My sketch has a round waist but I keep coming back to a deep point with an Effigy stays shape- more of a nib to the front. Mainly because it’s a very comfortable shape for me even with my broken rib. Yep that still makes it tough to even wear a belt, so it means I need to avoid compression over my floating ribs. I think I need a bit

I think there will be a lot of chain bars between layers to to control fullness.

ups and downs

Up: my scar is so fine and delicate I can’t see it! I am able to moisurise and exfoliate to reveal the new skin so that is very good.

Down: Fluffer Butter looks like he may need to have his ear removed. That is not an immediate risk but it’s there. He has a haematoma which is not healing and also swollen glands on that side. So hopefully we’ll find out today that it’s just inflammation and not something weirder.

Up: my site domain has registered for the year! It was tricky for a few reasons but it’s back and I’m still hosted and I will be able to publish my new site very soon.

Also Up: am going to “The Sickening Ball” which is obviously very ironic for someone with a life long illness!

So I have a goal for a custom design I have had percolate in my head for a very long time. It started as a thumbnail doodle in coloured pen and over the years has been explored and deconstructed and reconstructed to the point I have a very clear design that I just need the courage to actually make.

I have most materials but will need to invest in structure which might actually be a good thing for a few other projects.

I so want to share WIP but I also really want to keep it a surprise.

I can though say it works with the name, and with Halloween and is a celebration of who I am with a hearty dose of recognising of the tropes I fit into and at the same time really do not.

Currently bringing together all my stash which is a bit tough as some of it is at the very bottom of a stack of WIP materials. So, big deep breath and off to the stash.