website changes

I have a sturdy laptop now so I am about to use it to make over my site while also making use of the heat of the sun and comfy sofa or bed.

Finally got my site logo in place but have not really been able to get it to work in a menu. There should be a way to do so but I keep breaking my themes when testing in a responsive environment!

Also testing new editor and it’s probably what I have been looking for recently while trying to format the pattern book pages!

And I have finally decided to push ahead with the Marie Antoinette gown, Mina, and the Upstage gowns this year. All of them have elements I can do from a resting position and I think the self sabotaging procrastination needs to end.

Fear based on real problems is still fear. It is still in the way. The solution though is not the same as irrational fear. The solution is to make hard decisions based on reality. So I am setting aside several projects I do want to do to focus on what will still bring me joy, still be fun.

It just won’t be everything.

So as far as the research stuff goes i’m going to focus on my pattern book and one other project rather than try and get back all those dress diaries, all those pages of WIP that were lost to the hack. I resent being hacked, I really am angry. And I have every right to- I did not do anything to invite it, in fact it’s clear i was doing something good to be such a tasty target.

But it doesn’t matter. I can resent how much it hurt my reputation by losing me to background noise. But it doesn’t fix it.

And there may not be a fix. But I do know I have been playing catch up for too long in trying to reclaim what was lost.

So. About to install a local copy of my site and see what I can do with templates.

This week has been stressful

And ended spectacularly badly.

In the middle of yesterday I wound up completely and utterly overwhelmed. I wasn’t feeling great in the morning but I thought it was just physical. But by midday it became just unbearable. And I started crying and could not stop.

To be honest I hate the diagnosis. It may as well say ‘stop taking me seriously, and start telling me about yoga again.’ Because I know that this in particular has a stereotype that is very hard to budge. And in part because the medical establishment pretty much agrees with it. Which is also perhaps why it is underreported in somecommunities. I already deal with it, and have already thought “if it’s this misunderstood with a disease so well defined what is it like with more recently added disorders…”

I’d also recommend reading and following the commentary of actual advocates. I am not. They are best if someone you don’t know, so that you can see the near universal difficulties there are in trying to self advocate.

I highly recommend the following at the very least (not in any real order)

https://twitter.com/SFdirewolf
https://twitter.com/crippledscholar
https://twitter.com/Imani_Barbarin
https://twitter.com/MortuaryReport
https://twitter.com/dominickevans
https://twitter.com/DisVisibility
https://twitter.com/VilissaThompson

I follow all of them. I quite deliberately also follow disabled people who do not have the same disability as me, nor other shared identities. So I can keep myself in check too.

More health and costume

I saw my GP today and explained my fears. That while I am still getting my tests to keep on top of the Rheumatoid Disease that outside my core team that it might mask other issues.

And explained that I have not ever had a succesful A&S visit. Because of assumptions about my ability to recognise the source of pain and other issues that are particular to people in my situation.

But I now have some help for the Fibro and a little extra short term help to enable me to get back to the stretching and exercise that helps.

And am reconciled to the fact that after 17 years of real pain signals my brain is a bit overwhelmed and is perhaps not shutting up for pain that isn’t so much not there but shouldn’t be as bad. Also I spent 99.99% of that or more without pain relief. Even when I needed it. So now I get to stop being hard on myself.

Yesterday did see some unpicking and restitching of a Padme Light Blue cloak. Today is for stabilising the seams so they can stretch safely but also keep the seam allowances in place.

So I am feeling a whole lot better with a plan for going forward.

I don’t know what i expected

But I did not expect to have fibromyalgia diagnosed by my rheumatologist.

If I wasn’t wandering around with a cough for the last year and wasn’t pretty sure my broken rib has made a bit of a mess in terms of muscle spasming in my torso I think I’d still have trouble with it as a diagnosis, but as much because of the extreme misunderstanding of it, as actually having it. Like it’s hard enough to have chronic illness let alone one that is basically your body SHOUTING instead of hinting that something hurts. People just hear that it’s not real pain caused by real reasons.

I mean I can give quite clear reasons for why I hurt where I hurt right now. But I can’t get it taken seriously. I’m coughing multiple times a day, it’s productive but apparently not preductive enough to count. But I went through this with my kidney stone too. I wound up in an ambulance and still not believed at the hospital.

And why? Thought I was drug seeking.

So no, I’m not exactly happy with a Dx that means more pain and less treatment.

(edited to add: I should state my rheumy is good, she didn’t dx to dismiss my pain but to help explain why I am so tired and so sore all the time outside of the damaged joints. It’s just as a disease it’s possible to mask potential future issues from my Rheumatoid disease-causing I have more nodules so it is definitely not confined to joint spaces. My cough might be asthma, it might be lingering viral stuff, it is not bacterial, but it’s aggravating my rib and so I know I’m sore all over from that. I’ll just tired of being sore and tired and it’s going on so long it just has begun to appear normal.)

neglected site but inspired

I’ve neglected my blog for a while, but it’s winter here. Long story short it’s very expensive to counter the cold and I have not been actively doing anything as it is too cold.

But I did get inspiration to make a far more appropriate costume for me this year. I’ve wanted to make it for a while, but I think my current health status means it is a more sensible option than lots of embroidery or sculpting. That said the cold means sculpting oil clay is easier than in summer.

Anyway. I want it to be a surprise as I haven’t done that for a while.

I do need to get some supplies to finish current projects too. And so I will need to pass on some materials. It doesn’t seem worth it to get all the photos I need but I will try today. The sun has been out since dawn which means today for the first time in a week it’s warm enough to actually Do Things!

Yay!

So today will see some ironing of my red silk to get to work on Mina.

I also found some silver braid to unbraid and use for my Silver Saya y Galerilla y Jubon. I decided the ribbon just looks too flat and too much like an effort to hide the seamline that I am indeed hiding.

I really need a more delicate lace for my Marie Antoinette gown so will need to part with the 4 yards of lace.

The Elissa updating is going well. I am considering ways to make the net petticoat separate so I can use it under The Mina. I am well out of space for everything. So passing on spare fabrics is absolutely vital. Also extra costumes. Still got a few of those.

small victories

Well not small victories, quite major really 🙂

I managed to repair some “work” pants to be able to still wear presentable clothing while working with the messy clay.

And then I tackled my new pants all of which have that new fabric and stitching and elastic that together make it a bit difficult to wear immediately. So I removed excess stitching and dropped the seat seams so now have two pairs of pretend denim and five pairs of various shades of pink.

I’ve also been slowly working on the Phantom of the Opera gown. The Elissa skirt and dance pieces. Still not sure how to make the velvet tubes remain tubes. The stretch velvet has better memory than velour so I may need to get some spray glue to help them stay in shape.

Replacing the narrow looped braid for this scrolling braid. I was going to machine them but it wound up possible to hand sew with lots of beeswax on the thread.

But I also have been getting all the gold beads and trimming in order.

This is one of six new rope and tassel combos for the front of the dance skirt. The World tour versions have really heavy tassels (gold and black) with a few lengths of chain beads. I’ll hand knot beads on gold cord instead as finding a perfect match is just so difficult.

I added this length of saree trimming without really thinking. I think the skirt I want to mimic actually has a length of trim that is even top and bottom. So a quick check. Yep.

Note, this is about as good as it gets for this photo. Older programs did not have high density printing and were often very small. This is though my absolute favourite version of this skirt and I suspect some of that has to do with the very heavy contrast that may be an artifact of scanning for the web.

But I think it’s easy to see how I can love this and love the similar era Australian costumes. Really dense texture, and big blocks of colour.

New braid around the edges, new saree trimming on the side pieces and I unpicked some of my own beading and oraganza to get moe accurate loopy pieces in between. This is now much more like the newer World Tour versions that were also based on the very early Melbourne production.

 

And finally I have managed to work on the Enfys helmet.

The wings are too chunky but I was aiming more to get the front curve accurate. I may need to carve that down a little further. I’ll need to get a pointy probe (ie a needle set into a wooden handle) to find the thickness over the forehead and nose. But this was a good 4kg of clay melted and put on the helmet in one session so I need a fairly big break.

The heat was fantastic for my hands. It’s very close to wax therapy really. I melt the clay in a regular crockpot so it doesn’t get too hot. And I melted the last kg or two too far so was able to pour out on a dense formica type of surface and kneeaded it into flat pieces to precut the side jaws.

The character still seems to be under a bit of a spoiler embargo so there is a decided lack of detailed resources for all the large details that help the helmet read as “bone” not a perfectly rendered 3D model. Those are what I love about it but they are hard to see.

This is dye testing. Pretty sure it’s a very easy mix of yellow and red for the coral coloured sections and straight dark brown.

What is confusing when talking about it is that it is not dye like in any other medium. This would straight up be called paint. It is thick like regular students acrylic paint and doesn’t soak through. I mean I’ve worked with it enough but it’s still counter to everything I know about paints and dyes in textiles, clay, canvas, paper, etc.

Anyway. It does let the neutral skin to show through and so I’m happy enough to just wait and see what I can find for the lengths.

And this is the actual make and model of the “beads”. So tiny. I was going to cast them as they wind up about $35 a pop.

more slow but forward progress

I am still finding myself too sad to sew or make anything. The current surge of disease activity doesn’t help, but it’s not the whole reason.

But all my bushes are clean and reorganised into normal make up and facepainting categories again. And most of my pigment powders are sorted. I need to evaporate off a whole lot of orange for Ahsoka so that’ll be a while.

I did though also manage to get the really badly delaminated internal shelves of my make up case. Luckily the rivets were quite easy to pull apart and I have a stash of good quality ones of suitable lengths still.

So I just spend a half hour making a model in sketch up to replace the shelves with printed ones. Yes! A practical use for the thing! I may have to make some more, and may even print off come containers.

Anyway.

This is 150mmX155mmX3mm with sides another 40mmX3mm. The holes are 4mmD and centered and then 45mm apart. The same as the wood parts.

I think I’ll need to make the walls 4mm really. That would match the vinyl covering that has come right out. I’m wanting to reline the inside. Just not sure what to use. I may wind up just using the E6000 to really bond the vinyl to vinyl.

So. Next step is to get the courage to set the printer to handle printing ABS. So the bed will have to be cleaned and I’ll get some blue masking tape. Th ebed and nozzle need to be much hotter than I am using right now.

Oh, I could possibly even print some new handles for some of the brushes as wood and water do not mix.

On that topic. My cheapie brush sets have actually proven to be very durable indeed and even better than some of the art and some of the pharmacy bought brushes. I really need some more flat top brushes for the TV Sticks. I also really do think I’ll get some in orange. I mean the technique I use for Ashara is to use white and apply wet pigment powder to that and then blend with a flat top powder brush. It helps set it better than loose powder.

So TV stick in orange and maybe another roll of brushes as they really are that good. I think I got them on ebay.

relapse and slow doing

So yes, I think I can call this a relapse of my disease. It doesn’t look like what people think it is. So right my my disease is targeting the easy to access synovium so that’s around tendons and ligaments. And bursae in my elbows. So far only a small swelling on the backs of my hands (more bursae) but it is symmetric and I think is part of why it feels like my tendons are pulling from my knuckles to my elbows.

So last night I had 20mg of prednisone and this morning my face is all pink and hot.  So I’m going to go hunting for the Rheumatology nurse contact to let my Rheumy know. I can’t keep taking that dose but it’s the only tool I have right now that stops the damage. Codiene really doesn’t work in my relapses I have found- it’s much better in the recovery phase where pain is not induced by damage but by muscles and joints that have been hurt and it helps me get moving again. That is the phase where exercise helps too 🙂

But I would quite like to continue with my sorting out of my Stash as it’s a source of mental stress. Just like having sheets not quite properly fitted makes it more difficult to sleep- in that case it’s because I need to constantly adjust my blankets during the night. Easier to have them Just So from the start.

It’s another sunny day so it will be nice to spend some time in the studio while it is out.

My favourite make up tool box is made of wood and vinyl fabric and over time these have delaminated a fair bit. I was able to pull out most pieces as it really is that bad! Not sure how to handle some bits but I do very much need to get my make up kit sorted. Most of that is also just very light cleaning of brushes. It can be quite soothing as it distracts my mind and doesn’t hurt my body.

enfys nest

I wound up really enjoying Solo after all. I did not expect to, to be honest I cannot get into the Smuggler story in SWTOR at all. And I am not terribly keen on the idea of making movies titled after individuals- but really this was an ensemble movie.

It felt a lot like the Bounty Hunter story in many ways. And it also felt like a prelude to a series of new movies.

Anyway. I wound up falling for Enfys. And in fact the entire gang. But even if this is their only appearance on film there is a rich world in novels, comics, and hopefully the next round of tv… I hope. Timeframes work well. And with a character who looks like Boushh??? That leads to more questions. Is this Boushh? Is what they are wearing cultural or a uniform or purely individual? So I’m personally hoping we get a few more stories at least.

But the parts list is very spendy! There are coaxial connectors- cheapest I found was $NZ35 for one there are 25 I think….- and then the boots!!!! And the fabric parts aren’t any easier to figure out to be honest. The cloak is shaped, shoulders are obscured by the collar (buffalo, seriously!!!) so it’s possibly helped with some darts? And the suit underneath is mostly a dark brown oilcloth but with some dark blue patches.

The teeth I can do. Looks like a single mold used judging by the two crease lines I can see on the top curve.

The shoes I can mostly do myself. Just need to find some simple sandshoes.

congrats here’s a cold

I realised I have been able to travel three times this year thanks to friends offering sleep space and more. So fantastic.

Disability is incredibly isolating. And once upon a time Social Media was a lifeline. Now… well with how timelines are manipulated it’s quite the opposite.

It’s easier than ever to find another disabled person on the other side of the planet, but connecting to friends and family? Totally relies on how their SM feeds are set up. There is nothing we can do as individuals to be part of that. It is up to everyone else to know how to tidy their feeds.

It requires going through ad preferences for one, which can be overwhelming if you haven’t had a look in a few months. Every single like or click on a post winds up affecting that directly. And thus fills up your feed. And actively choosing “hide post” and any other directions after that to either hide the person or the content. It’s a constant. Not a one off.

Anyway. I do currently have what feels like the start of a cold. Not surprising. I also have been having skin issues- any scratch or nick in my skin becomes a super enticing place for bacteria that normally are perfectly happy as background actors.

So time to have a rest. All I want to do is eat and sleep. So pretty sure it is indeed a cold.