Tag Archives: health

why one must use all resources!

After removing all the dye from my Sunburst silk I had another look at the information available. I wanted to see what the silk would do as UV light worked on the last remaining colour remover molecules. before even thinking about dyeing it.

I can’t dye the skirt, it has already been fused to a cotton backing 🙂

And then promptly lost the exact quote I wanted. And just found it again. Anyway. There will be a references guide added to my site soon as a page, because I think it needs a little more formality than a blog post 🙂

I noticed also an historic homestead has started folloiwn on instagram so feel a tinybit of pressure to you know, include content they might be interested in!

And I have gone and cracked the cartilage in my ribcage. I am used to being able to sort of.. slip it- painful- but this was a little extra pressure on one point and so now it needs to repair. Luckily it is quite a sharp continuous pain- no I don’t like pain but as a warning, as a limitor it’s fine 🙂

And there is a steampunk event tomorrow. I really wanted to wear Mina, but I would have to spend all day on the bodice… hmm… but I cn’t really do any kind of corsetry until my rib heals. So no. I’ll wear something else 🙂

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fatigue

I struggle to explain how I can tell I have fatigue versus being tired.

It does physically feel like pressure. But I think that veers a bit close to what is said is experienced in high anxiety.

It’s not the same.

This is more like standing chest high in water and trying to breathe. It’s not pressure on the chest, but the feeling of being pushed in all directions, and no matter how deeply you breathe it feels like air is being pushed out. And sometimes that does actually happen.

Much like in water limbs feel strangely supported and heavy at the same time.

 

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anne of cleves continues

I did manage all the brocade stitching yesterday. I need to press it before stitching the joins but basically six rows of more than 4m a row through metal brocade was a nightmare.

Yes that is overlocking, no it will not remain for long. I do need to get some tape over the seam allowances but this keeps the edges stable until then. It may not be possible to find enough linen to make facings.

I think you may be able to tell the thickness from these photos, but that is a big needle. I need big needles so I can use all my fingers to push the needle through. Usually I can do this in a way that doesn’t require a thimble but this was so grippy… my needles did need to be pushed through at the very end and I can’t use thimbles so I have a bit of healing to do.

note: calluses are not good. They are brittle and less able to resist the pressure from a needle end.

I am looking at a leather thimble for my ring finger though. I sew and write using all my fingers anyway due to how my fingers curve unhelpfully, so I’ll test thimbles on each finger to see what works best.

No I am not able to use short needles please do not recommend ways of using them. I am though looking at just restocking more frequently. Pincushions have the sharpener for steel needles. Well most modern needles are chromed. This means you can’t really sharpen them to the same degree. Also the profile of the points can vary so I need to look to see if there is a specific brand and type that i can continue to buy.

I’ll see if I can get some photos/video of why short needles are so bad for me!

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okay, interesting reading on bone loss

I was trying to find some real research on costs and benefits of non-medicine therapy (diet and exercise) and it’s pretty much all reliant on assumptions. Also no real follow up. Long term is not two years. Not when you are living with a genuinely long term disease.

For example, the bone loss thing. It’s a mix of factors (very good easy read but very long), but primarily the disease itself suppresses bone reformation- probably to prevent the joints becoming a big lump of bone.

Pretty much every negative effect of the disease is actually the body trying to stop the disease.

~`Low iron count? Iron is used in inflammation so this is a fast way to slow it down

~High ESR- again, clump those red blood cells together so the iron is hidden from being used for inflammation.

~Osteopaenia? endogenous glucocorticoids are released in inflammation, as anti-inflammatories. They do the same damage to bone as the pills we take. (I also suspect it is to prevent joint fusion/deformities. I’d like to see if that bears out but I’ve been impressed with how my accessory bones seem to have been resorbed first.

 

We also have poor nutrition. Now this is not to say we make poor food choices! here’s the thing: http://joe.endocrinology-journals.org/content/201/3/309.long

Chronic inflammation is frequently complicated by poor nutrition. This is partly due to inflammation directly inducing a highly catabolic state.

And:

It is predominantly manifested by a reduction in lean body mass.

The disease changes our metabolism and reduces lean body mass itself. There is so much focus on how we are less active, but yes, if I look back to my early years I noticed extreme body changes that did not correlate to previous exeriences.

Calcium and vitamin D are important in maintaining adequate mineralization of bone. Deficiency is associated with attempts by the body to overcome the problem by increasing PTH secretion.

Which leads to:

This increased RANKL expression increases bone resorption through an increase in osteoclastogenesis.

Basically there is a vicious cycle of bone resorption to try and make up for lack of calcium and Vit D. And these are first affected by poor absorption- usually due to gut inflammation.

Inflammation related bone loss is an important clinical problem and several approaches have been used in its prevention and treatment. One approach is to try to reverse the underlying mechanisms that cause the bone loss. Exercise and improved nutrition would seem to be logical treatments where reduced mobility and poor nutrition are implicated. Where exposure to therapeutic glucocorticoids is implicated, it would seem logical to try to reduce the dose given or use alternative anti-inflammatory agents. Unfortunately, these manoeuvres are usually not possible due to the nature of the underlying disease.

I love honesty like this. It means I can focus on treatments that work and not waste resources on treatments that don’t.

 

So basically if I could find a trainer to work with me every day and not only create a training schedule that works but is also adaptive and we can alter it at will that would be great.

The problem is I have no access to a trainer every day.

I have looked into local gyms and looked for specialised trainers. There are none.

At the moment the best recommendation is to just try and stop if you hurt yourself.

Well that’s going back to the driving without a fuel gauge thing. I think I’ll keep sticking to my low inflammation diet (which changes depending on how I respond to it- and it is personal it’s all about what causes me inflammation and that tends to be sticky starches and fats) and low inflammation exercise.

Luckily I live on a nice fairly flat area and I have walking routes that are very short, short, medium, and long. And generally I can tell at each turn if I can go the next distance.

I also try to avoid boosting iron but I do boost protein, B12, and folic acid to help build red blood cells. It’s helped a lot. Like a crazy amount. My anaemia is much lower. This is through diet not supplements.

Very lucky I can do this as I do not do well on red meat or completely vegetarian. Yet others do better being vegan or fully red meat. It really is individual and it really does make for difficult choices if there are reasons beyond physical health that impact your life.

I do prefer changes in what I do over medical intervention but there are aspects to this disease that we have little control over.

Accepting that is a step to finding our best chances. I will continue to try to balance what I can with the tools I can use.

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fatigue

Having constant fatigue is like driving without a fuel gauge.

You can often make calculations to make sure you don’t get into trouble. But in order to do that you need to make calculations constantly- fuel in fuel out is not always a simple measure of how far you go but also about conditions and even waiting/resting uses fuel.

You can make all the best choices but you have to remember everything you do and don’t do. You have to continually check maintenance of everything else to make sure your understanding of fuel use is accurate.

You keep yourself checking for warning signs of getting too low, and sometimes you manage to catch that and sometimes you don’t. If you are lucky you can get to where you need. But you also really dislike calling in emergency services because you know you’ll be told you should have known.

And your disease uses up fuel just by being active. The exact amount varies but it’s also not really been quantified. And it’s not just energy that’s used up, bone is dismantled and absorbed faster than it is laid down.

So yeah. Currently I’m in the I think I have the balance right.

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cleves progress

Today the carpal tunnel injections have proven their worth 🙂 If I can do this one or two more times before I have to have surgery I’ll be happy. Sounds like I need my ulna’s chopped off sooner, but, maybe?

Also I may have gone through 1/4 of my Hot Cinnamon Sunset tea. Now if I could get a perma-stash of that I’d be happy 😉

Okay so putting fabric away up high just made my radial stuff really make a statement but I am just wandering around with bandages around my wrists not full splints 🙂

But I have cut my Cleves skirt fully, an entirely new kirtle bodice (hey Michaela it’s summer, you do not want linen canvas, cotton twill, and silk underneath those layers for the bodice) from my linen twill.

Just took a break to share this. I usually work with non easy to photograph fabric so this is why I’m sharing now! I usually use a mechanical pencil and draw directly under the pins that emerge from the top but I just had chalk out there today.

Also yes, florist pins. They grip better and I can really pull in my seams to fit properly. It’s easy to see how, I also overlap them to work like boning/support.

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good news bad news day

Very much up and down. Most of the down was not serious and the serious ones are not as serious as what they could have been.

 

So I saw my surgeon today. I do need surgery but probably not as intensive as it could be!

That’s the good news.

The bad news is that it may be that my hands naturally fuse together.

On the other hand there is a partial replacement option!!!

Bad news is it still involves chopping the end of both ulnars and replacing them with metal.

 

My hands though show nerve impingement. Radial and carpal.

Good news is the carpal tunnel should be an “easy” fix- mean done a heck of a lot- but it is more surgery. Basically my hands are going to be a mess of scars.

Good news is I am test driving some injections to see if surgery is going to help- no point if the damage has been done, but either way this is a fairly non invasive kind of trial 🙂 My hands do feel a little on fire so some NSAIDs tonight.

 

Good news- found my Mothma Fabric!!

Bad news it isn’t actually able to be de-coloured to white.

Good news is I can bring it in as the lovely lady at the counter was on the store’s social media tonight and said to bring it in to exchange 🙂

Also good is there is a cheaper fabric that was very close so I should be able to swap length for length and get some pins or something to make up the difference 🙂 It will need to be washed in hot soapy water and fulled but it is the closest I have found in a decade of searching.

 

And finally.. turns out I did not have a Dromund Kaas Stronghold, but it was all of 5 credits to buy.

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A very good day

Today was actually quite magnificent really.

Found another big pink storage container- slowly getting a few as my bucket system is great for trims etc but most projects atm are BIG!

So after that I picked up two pairs of shoes from savemart as well as a sofa cover in faux suede, but the satinbacked stuff so is really  a peachskin. Frays like heck but sits so nicely. So that will be for Ahsoka

The shoes are for my elsa shoe makeover 🙂 Three pairs made into one perfect pair 🙂

I also decided to turn another three sets of shoes into two.

I also got Ahsoka’s montral cast. And they should cure overnight as opposed to a month for Shaak Ti 🙂 So if this works I may be able to help out some others by at least have an assemble your own kit.

But on top of this all…

Yesterday I managed the first walk I have been able to in over 6 months. I haven’t really spoken much about that as it really was just too hard to think about.

But today? I jogged. Not far, in short bursts. But I did it.

I hurt a bit. But most of that is muscular from not really moving much and some is still inflammation. The infusions are the best chance I have but they are still limited by my immune system just being so determined that it is right!

 

Photos of shoes and Ahsoka tomorrow as I am not really up to fighting WP media uploads right now!

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swtor-knights of the eternal throne, 3

Chapter 3, Dark Reunions

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swtor, knights of the eternal throne, 2

Invested in the story we continue to find people willing to help, and of course figure out their intents. But this stage as Commander you find people both wanting to take you down or use you to their ends.

My toon and I share the same side eye look a lot.

Chapter 2: Run For The Shadows

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