Category Archives: life with disability/illness

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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still no photos

Also today was spent mainly reorganising. I have a bee in my bonnet to make a particular frock and I realised I have tossed the very helpful strip of saree border that would have helped.

Anyway. I am dedicated to this project!

But I have also made huge headway elsewhere- the Ahsoka cast is not cured, but my cunning plan has allowed it to take another day to cast and not warp! To not pull out of the mold.

I mean yes, I did the obvious of soaking the mold in water until it remained damp- this helps slow the draw of water out of the latex on that surface. So it allows a much more even cure from kin to inside.

Still need to actually get the darn thing out and on a good firm support 🙂 I may want to cut up a pool noodle again for the upper- well I actually used a thinner insulation type for Shaak Ti. Worked really well as I could carve the ends to fit in the top of the horns 🙂

But my Elsa shoes have been put back and are curing on my shop mannequin legs. I’m only sharing progress once they actually work! I may need to get a bit cunning and put the old sole in place with the new one under that.

But I also found another pair of Kumffs that I can remove colour from and put a new sole on 🙂

Also I am right now debating between going for another walk or doing some beading. I know I need to do a little more text editing so maybe walk. Yep phone is fully charged 🙂

I can decide between beads or text after that 🙂

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Filed under life with disability/illness, projects: early historic, projects: media recreations

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

Continue reading

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gaming limitations

I have tenosynovitis right across both hands, a result of Rheumatoid Disease. My ulnar has shifted to sit on top of my carpal bones as well. This is obviously fairly catastrophic over time but with splinting and therapy I should be able to get more use before limiting surgery. I need to take care of my fingers too as the smaller bones in my hands and fingers are eroding and recycled to be used in the disease process.

I use a regular keyboard and type sideways. I have tried other keyboards but the learning curve is very steep. In this way I balance speed of typing, lightness of pressure and can prevent my very fragile little and ring fingers from hitting keys they shouldn’t!

Here my ideal key press approach is on the left, on the right shows a key press that I need to avoid. But this is quite often what is needed in my ring finger of my left hand if I use WASD to move. I rotate the keyboard further when I am able to totally separate keyboard use from my mousing hand.

An ideal setup would be to have an angled desk and keyboard set in. So I am looking into keyboards with some slope and rest areas. But typing sideways means I am using my shoulders to move my hands over the keys as much as the distal parts of my hands.

I use a very light weight traditional mouse (usb) as I can rest my entire fingers over the clicking area and avoid direct pressure on the tips of my fingers.

This is how I try to use the mouse, so I depress the full finger. It can be a bit slow. But the mouse is more responsive than my keyboard.

Here you can see how my palm is fairly well supported.

My hope with my Xbox controller is to be able to get my hands off the desktop entirely and be able to avoid the rotation of my hands and wrists that happen with a mouse and keyboard.

But I am also going to invest in a vertical mouse have now tried one. I’m concerned about the weight and surface requirements for it to work.


These help, a lot. But they aren’t total solutions as there are no total solutions to my disease. It changes the bones and tendons in my hand but also those muscles and tendons that control the hand to originate in the forearm.


So I have to be selective in non vital activities. I also rely a heck of a lot on spellcheck to do posts like these due to difficulty depressing some keys.


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kindness part 2

I hoped I would not have to update this so soon.

I recently shared how upset I was at my limits, not just of my body, but of what my reality is in terms of treatment.

I was responded to with being told what to do, with the overt suggestion that I hadn’t already exhausted my limits of understanding my own disease. This happens every single time I post about this.

I am facing wrist fusion ( WF, arthrodesis) rather than Total Wrist Arthroplasty (TWA). The only glimmer of hope has come out this year:

Loosening Still Plagues Wrist Implants
Type of implant used was a contributing factor
by Nancy Walsh, March 04, 2016
But this is an overview, not novel research, it needs to be reviewed and that could take a long time before my District Health Board (WDHB) can actually do this. For future patients? Good news. For current? It’s too far out to even hope for. Or rather it’s why i am really struggling with a lack of access to physio to hopefully preserve my hands long enough to benefit.

Otherwise the current state right now is my surgeons are keen to cut my tendons and bones and fuse not replace.

Waitemata DHB Orthopaedic Services
PUBLIC SERVICE Joint Replacement Surgery (Arthroplasty) – Including Patient Information Videos
The very first words indicate the primary focus for arthroplasty.

Intern Med J. 2012 Jun;42(6):620-6. doi: 10.1111/j.1445-5994.2012.02815.x.
Increasing productivity, reducing cost and improving quality in elective surgery in New Zealand: the Waitemata District Health Board joint arthroplasty pilot.
Cullen J1, Bramley D, Armstrong D, Butler L, Rouse P, Ashton T.
It’s not like my health board isn’t trying, it’s just basically the Red Queen hypothesis in action (running faster and faster to keep up.)

Auckland, New Zealand Clinical Trials
I keep up to date with clinical trials in my location.

Wrist Joint Replacement (Wrist Arthroplasty)
There is a reason you see patient hands over a certain age:
The typical candidate for wrist replacement surgery has severe arthritis but does not need to use the wrist to meet heavy demands in daily use.

J Wrist Surg. 2016 Aug;5(3):211-6. doi: 10.1055/s-0036-1571841. Epub 2016 Feb 9.
Trends in the Utilization of Total Wrist Arthroplasty versus Wrist Fusion for Treatment of Advanced Wrist Arthritis.
Melamed E1, Marascalchi B2, Hinds RM1, Rizzo M3, Capo JT1.
Sounds great until “WF was performed nearly four times more frequently than TWA. A trend was demonstrated toward a decreasing number of TWA being implanted, and in patients with more underlying comorbidities. TWA was associated with a higher hospitalization charge, which may be expected given the higher implant costs associated with arthroplasty.

Clinical Management of the Rheumatoid Hand, Wrist, and Elbow
A very good easy to read up to date understanding of the disease, especially of the prognosis. I have had this disease for 15 1/2 years. But I will have it for another 15 years, if not more. I have high Rf and systemic involvement.

A Comparison of Complications of Total Wrist Fusion and Silastic Arthroplasty
S. Hassan1⇑, C. Carpenter1, P. Estridge1, A. Malhas1, C. Wigderowitz1
Geriatric Orthopaedic Surgery & Rehabilitation December 2014 vol. 5 no. 4 213
For elderly patients having rheumatoid with low demand, this treatment has a lower reoperative rate at 5 years and therefore may often be the final treatment they require.

ASSH Manual of Hand Surgery
edited by Warren C. Hammert, David J. Bozentka, Martin I. Boyer

Journal of Orthopaedic Surgery 2014;22(3):399-405
Review Article: Total wrist arthroplasty (PDF!)
Rajesh Nair
“TWA tends to fail earlier than hip or knee
arthroplasties, but TWA has better short-term
outcome.25 The ideal candidates for TWA are frail,
low-demand patients with RA or osteoarthritis
seeking pain relief and moderate wrist motion.”
“Both patients and physicians prefer surgical over

non-surgical management for wrists with RA. ”
I don’t, I’d rather wear splints, but they are not really an options due to a lack of types available to me. But I will see about other physio centers as I have seen a few better.

Total Wrist Arthroplasty in Patients Younger than 60 Years of Age: An Analysis of 261 Consecutive Primary Arthroplasties
Level 4 Evidence
Eric R. Wagner, MD, Casey M. DeDeugd, MD, Marco Rizzo, MD
Paper 72
Even for an implant that was considered low risk, “The 5, 10, and 20-year implant survival rates for the patients <60 years were 80%, 70%, and 60%, respectively, which was significantly lower the older patients ”

Clinical and Biomechanical Analysis of Total Wrist Arthroplasty Devices
Studies to explain how implants are designed to mimic most common range of motion vs maximum range of motion.

Operative Techniques: Hand and Wrist Surgery
By Kevin C. Chung

That’s only a quick search today. I have been hunting out information for more than 15 years.

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Rheumatoid life

Fatigue edition.

I occasionally realise that people don’t experience pain in the same way, let alone experience different types of sources of pain. There are also different kinds of tiredness so that it can be hard to understand when someone with a fatigue symptom can appear to be okay.

Tonight I was supposed to go to an SCA feast but with the time frames, the distance traveled, the time waiting, I simply couldn’t commit. This is fatigue- looking at the full time frame and working out how long I’d be sitting upright, how long I’d be walking, how long in a car, how long standing. It’s a calculation I wish was much easier but it’s not, and I don’t always get it right. This is because it is complicated and relies on variables that can change in under an hour.

This is not about prioritising, not about saving energy for people and things I love, it’s the on the day calculations and working out if there is a cost, and at what point it will come up to pay. If it comes up during a time I’m away from home I have to err on the side of caution. It’s not about making choices of who to spend time with.

Fatigue itself is not about being tired, it’s more like misfiring communication between different parts of the body and brain. Right now I am upright and not really going to be doing anything different to what I would be, on the surface at least. But there are few consequences for myself or other if I stumble a bit, or bump into things.

Mistake making is high when brain and body are not quite fully in communication with each other. It feels like there is lag between thoughts and between thoughts and actions. That delay is okay when I can self correct, but it’s tiring on top of being tired to try and stay vigilant for errors. Am I going to trip, where are my feet, where are the feet of the people around me, is there a rug, or equipment? I am not naturally tidy, but I have had to make sure that anywhere I go there is a clear path on the floor. Not just because of fatigue but because I can’t just step over or around if my ankles or knees have inflammation.

I am avoiding a fatigue crash because it is so vile. We talk about brain fog, or the methotrexate hangover. And for people who have experienced being hung over it really is the same. The seasick feeling, the delayed response, the sensitivity to light and sound and smell.

But imagine that if there was no payoff. That you didn’t have a crazy night out.

And yep, there are times you just say if I’m going to be this miserable after then just do it. Today is not one of those days because I know the time frame would be too short for me to manage it.

Other times I have been able to. So that is always something to hold on to- there are times where everything works out.

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Filed under featured finished works, life with disability/illness



by admin, December 19, 2014

Well the term was used at hospital, even if I feel uncomfortable with it.  But yeah, it is chemo- fewers doses c.f. MTX but still.

So my reactions are delayed the not-fever, nausea, and malaise,

Ice, kids pamol (to reduce pain and fever) ice and my own still needed Z is helping.

Also a tiny little bit of an inability to fully form a whole sentence so very little writing. Sticking with fb to reduce exposure to the wider public.

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by admin, December 16, 2014

I’d say he’s happy I’m home bit I think he missed the blankie.

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by admin, December 9, 2014

I finally submitted a ticket to lj:

So I hope I can start crossposting again. It is me being blocked at LJ’s end, not my host as I have tried several plugins.


So a health update:

I am very unwell due to the Rituximab. However I begged for children’s paracetamol (Pamol) and it works. It works so much better and faster than trying to choke back on pills right now 🙂

I am vomitting every night due to feverish symptoms and pain. It’s finally eased tonight and I think it is a mix of the immune system settling down (the treatment basically is a huge kickstart of one part of the immune system KILL ALL THE CD20 B CELLS!!!!!!!!! so I am awash in toxins from cell death. But those cells are part of the immune system so I also have to be careful about catching bugs those cells target (usually bacterial.)

So it’s a bit messy right now. But, as I mentioned the kiddie medicine works better than adult so I highly recommend it for my fellow spoonies. I’m taking a 10ml dose every 2 hours (well a desert spoon every 45-60mins) as the dose is supposed to be 20ml-2 hours. But I need to overlap doses that little bit.

Anyway. So if LJ is able to help, hooray! I won’t have to try and copy paste each post each time- which is difficult for my hands on this desktop, more difficult on my netbook (no mouse) and impossible by phone.

Pleasepleaseplease 🙂

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