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.

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 🙂

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 🙂

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 🙂

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

starting to be able to type again

I mean I often have to type one handed due to hands being sore, but now that I’m a bit more comfortable I can sit at my computer and do some of the typing and data management needed.

So my cunning plan for my image database has fallen over a bit as it is not future proof. So to future proof I need to create several hundred pages with all my categories now turned into tags. Less than ideal but functional, and not likely to break in a theme change.

So I am taking it as an opportunity to really refamiliarise myself with terms and to use the time stamp to help order them in a search. In fact that might really work out better.

still nervous still making

I have been sharing my sleeve patterning progress on Instagram (TheFrockChick) because it is such a cool exploration of extant patterns I know very well and how I would make them now.

I have managed to find a way to make the spirals work as spirals!

This is my prefered shape. But I have only seen this Dog Leg pattern for fitted sleeves. And I have a whole article to write up about those! So I went back to what I know is in the various pattern books for full sleeves and worked backwards to get something I think actually would have been the go to for tailors.

I keep my back seam, which allows for an opening to the cuff, and the angles of the panes are shallow at the top and acute at the bottom.

I will get photos and do a proper post about the whole thing but I managed to find a vintage saree woven with metal and a delicate scrolling design!

Normally that pattern would be a beige thread over most of the background but I checked all views (yay for sellers who show the entire length and the reverse of their saree!) and it is gold! the green is not ideal but I also know these respond very well to RIT colour remover. The main body is that pattern on red so I can even just avoid that altogether. There is also a lattice border for other projects!

A perfect match? No. But I agonised over this for so long that I decided to get a compromise in my budget that would also help in my teaching. The gold is metal. It responds very differently to even the very best metal and plastic combo. So I’m hoping to be able to share what real metal feels like and reacts. It is very hot to iron for one!

And when the Sartor Margarete fabric becomes available again I’ll be in on the pre-order!

All of this is three days before my carpal tunnel surgery.

I’m finding it hard because I am scared about the consequences of having a wrist so degraded by erosion. Infection I am prepared for. I have learnt what are danger signals and when to call in reserves. I’m just in a position where the damage from erosion is like 90% of my issues that I wonder if the risk is worth that 10% improvement.

But I also know that I will risk further damage to my nerves without this.

It’s just not the same equation that most people know, and even within RA patients we have different outcomes.

So. I will be very proactive and if my hand feels weird outside of what I know will be weird I will press for investigation.

I am still very much not okay though. But I am very definitely hopeful- any function I can protect or retain I am all on board for. Which is again why the equation is not easy- I want every possible therapy and help I can get hold of. It’s the risks that are unknown that are hovering.

Surgery in 9 days

First carpal tunnel surgery is on for next Wednesday. I am extremely nervous. It’s very common surgery, my wait reflected how many people get it done. I do need to check if my current skin problems will cause issues. So I’m seeing my GP tomorrow to get him to look at my hands and be honest. I am not sure if my DMARD needs to be stopped, not sure if there is enough time for it to make changes. As it designed to slow down my immune system it”inhibits the reproduction of rapidly dividing cells…” But this also includes skin cells and hair follicles. So this in effect is why skin infections are kind of doubly likely to happen.

So will nine days be enough to reduce that risk? Is 9 days long enough for me to get antibacterial cream working (is Bactroban being made again?) Ah ” elimination half-life of 14–18 days ” hmmmmmmmm. maybe?

limited time

Been a bit quiet. Everything takes a long time with my disability so I wind up a bit behind when I try to do a few things!

My new site is a bit on hold while I decide on future proofing, my book is on hold because it might require an entire restart of images! and my frocks are on hold because I’m just tired and overwhelmed.I do though have a lot to get started which is nice.

Fibro also makes things a bit slower too because it seems to set off muscle twitches and spasms and sometimes it will be a day sometimes it will settle in for a few days. And I can re-set it off again a day later by pushing that little bit further.

Which I did today.

On Thursday my friend came over to help me play SWTOR (it’s Saturday afternoon here as I type.) I need in person help on that, unfortunately, as it’s been points where it’s a forced solo mission but not scaled for story (apparently the other modes are all okay?) And though gaming is something most people do to relax for me it’s a full body activity and so not only do I need to pace for my hands I also need to pace for all the muscles in my torso holding myself upright and also keep my arms in place to take as much strain from my hands as possible.

I wound up with the same kind of cramping and twitching and spasms as I get when I am out travelling. But I was hydrated, had electrolytes, so I really can’t call that anything other than having a very definite upper limit of activity before I go splat. It’s not anxiety (panic attack) it’s not linked to hydration/food, it seems to be linked directly to length of time either walking, or sitting, or any other activity that involves half or full body immersion.

And that really is tough. It is well short of targeted ideas of physical activity. And it’s also rather short of any level of activity that builds stamina, muscle etc..

So while I know this, and I have lived with limits for a long time, and shifting limits at that. This is now very marked. I essentially need to treat one full day as two. I need my midday rest but it can feel forced or at times do the opposite of what I need.

To summarise, It’s probably a good idea for me to really train myself to divide my day into two and treat each as having a warm up, middle, and cool down. And I need to do a little a lot and accept that what used to take me a week now takes 6 months.

Ugh. I wish I was kidding.

thanks body

So I apparently had a panic attack yesterday. And let me set one thing straight for people who have never had one- it did not spring from stressful thoughts. They came after the physical. It’s very weird and scary. My hands cramped up (just like my toes do regularly anyway) and my legs.)

Anyway. It all started by a whole bunch of really bad timing. I had my usual breakfast. Which is not a breakfast designed for lots of energy. 

Firstly my bus to my destination sat idling for at least 20 minutes. I think it was there early and because it was at the front of the stop we all got on board while the earlier one was later and so we all missed it.

I got to my destination late so was already pushing my limits for the day, the trip is usually only about 30mins but with the added wait it was obviously much longer.

I was going to get a cup of coffee or tea then but thought that I could grab a cup at the hospital as it was next to the blood collection place which was what I needed to do. It was going to be what, ten minutes.

I decided to walk the short distance to get my blood tested after only to find a sign saying they had moved. To a street right next to the place I was just at. It was a short distance down the side street and then down a driveway. 

By that time I was very sore. and by the time I got to the centre I was not really fit for walking- but had no option as I was already out walking. 

Basically if this was The Good Place my test would be this scenario. 

Then there was a good 20 minute wait there as there was one nurse on- people after me left- I was not really able to do that.

So then I had to walk up the street and was going to have a cup of tea, as it was now after 1pm so coffee was a no no. 

But my bus back was pulling into the stop so I decided to put off having food/drink until the bus got me back to the station. So that was another 30min delay in rehydration.

And then lo, at the station my bus home was about due so I put it off again as my buses are too infrequent to just go to the next one. 

But by that stage I was hunched and my ribs hurt and I was not breathing properly. So that’s when My entire body started cramping and tingling. And then at my gp I was just about ready to fall over.

So this is very much what happened almost exactly 6 years ago at DragonCon. It was just a lot more obvious as to the physical cause.

Anyway. I basically got home and went straight to bed.

And I hurt still today. Will be doing more in the way of research again.

delaying tactics

This year has been full of putting things off. It’s a bit of a vicious cycle: I am tired and sore so rest, I get back to a project and mess it up/unpick it, I get disheartened, I put it aside, I choose something else, get a lot of questions about why it’s not perfect, then get discouraged, then at any point the tired and sore moves the whole cycle into a spiral.

So I now have all my important papers in one place, all my music in another, all my own art work in another, and all my costume references in yet another.

My hope is that I can move all my references to be with all my reference books and then all my fiction in one place and all my music books with sheet music etc.

I have wound up setting up a little lot of inflammation so might will just have to take a break.

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.)