So that rib

Sep. 11th, 2017 04:04 am
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Turns out it’s broken, healing but broken. Cartilage does not show up on xrays though and here is weirdness at the jon between bone and cartilage so I will ask for further investigation.


As for what can be done… nothing. Pain relief. But nothing.

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I may have to face the fact that my infusions are wearing out and I need to get ahead of the pain rather than treat it as it happens. I can hardly walk at the moment due to weirdness. I think it’s a mix of nerve pinching and muscle wasting after that nasty nasty bug.


I’m wearing heavy boots, it’s true but that’s also to try and build up strength again. I tried going for a walk and got to the end of the street and wanted to go back home :/ And today it was just the length of the drive! I’ve been standing and doing things but actually walking- my legs feels half numb like I’ve been sitting on my knees for a while!


But my wrists are also really acting up (note- hand surgeon appointment next month) and I’m sore all over like with the flu. So that’s usually the start of a big flare. But I don’t want to take steroids. I may try upping my Leflunomide again. Right yes. It’ll take longer but will last longer.


 

So for regular readers or those who simply land on my site or page can tell, I don’t do paywalls, nor sponsorship. I want to be free to promote things that have really made an impact 🙂 I don’t like putting bad feedback out there as it is so permanent and may still be around even when a manufacturer/seller does make changes.


Anyway. This post is brought to you because I am upright after figuring out how to arrange my pillows so I could breathe last night and that I am remaining upright thanks to a nasal spray that actually works- it’s a bit stingy as it has tea tree in it but well.. This is the first time I have painlessly reduced congestion from a cold ever.


So it’s Fess.



I may have used it it little differently because I found the spray actually did the thing it’s supposed to and with nasal passages so full that you can’t breath that’s impressive.


So I sprayed, cleared into a tissue, and repeated because I was so congested.


Anyway, my nose was not happy the first time I used this as the tea tree oil is very astringent. but it does have moisturising agents so it didn’t last for long. It also did sting my tonsils- yes it really does clear congestion that much! But wow.


Okay so it’s so good I need to be careful to not over use it 😉


Oh and it leaves a pleasant taste. And everything also smells slightly minty. And that is indeed a wonder while leaking germs!


 


For those curious about the pillows- I have a habit of rolling on to my back at night- usually not good but actually the only way to breathe while the virus is super active. So I used a feather pillow to make supports for my head and my normal pillow for my upper back and shoulders to keep my head raised. A tiny bit cheaper than those electric head options though man.. they seem like the perfect future bed option.


 


So I am going to attempt to have a day of gentle sewing catch up 🙂



Tags: health


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While I wouldn’t say it’s a cure it has helped decrease local swelling to the point I can genuinely test what is going on.



http://www.fprmed.com/Pages/Trauma/Costochondral_Seperation.html


Go down two more ribs and that’s where mine is. I finally was able to do a very gentle test of the hook manoevre and I did at least find the natural edge of the cartilage curve 🙂 And it moves with breathing.


I can even sit upright for a while now :0 Breathing is weird as the muscles that attach to that rib feel stretched and so also feel like they are cramping. So I don’t want to move it all too much.


 


Also that amount of inflammation set of a mini relapse of my RA, and also ummm… inflammation in the abdomen. But I think that has settled as well.


 


Still a long road to recovery. And there is a lot of mixed information out there about treatment.



Tags: health


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In order to figure out history of the gown I wound up with dozens of reference notes about the production of garments and how there are multiple copies and why.


I still haven’t found the specific references I want (all secondary atm) but enough to feel confident in several statements made.


But there are some conflicting descriptions of materials, I have my suspicions about why so will also have to discuss those.


So yeah. I can now start the day and do things.


 


But I also will have my abs juice ready to go today and the latex work of yesterday will hopefully pay off today. Unless it didn’t adhere in what case I get to strip the base back and redo it. IsoPro does work but it is a PITA to time correctly. The latex needs to be clean and dry for the next layer of latex. But with a very damp climate there is a fine layer of moisture on anything outdoors- or in a room without insulation.


 


What else… Oh yes. I need to bleach my sateen panels for my 1870s gored stays. I worked out what I need vs the original pattern styles so will also see if I can make one in red sateen finally. I have tried to do this in the past and somehow wound up with stays too short.


What I need from stays is less about squish as it is about reducing stress on ribs. My current pain is a very good reminder! My ribs are very long, there is barely two fingerwidths distance at the side of my waist between ribs and pelvis. So this means if I want a wasp waist I either deal with ribs being heavily squished or I make it nip in only at that narrow point. Or I can avoid too much restriction and taper the stays to the waist then flare out over the hip.


This last one is what I find gives a shape that is both acceptable to a modern eye as well as historic. If I nip in only at the waisy it tends to make everything else seem disproportionate rather than drawing the line in.


So today will be spent cutting fabric and bleaching to have a summer and winter variation. There may even be enough silk satin left over, though that feels a bit extravagant!


 

fatigue

Mar. 17th, 2017 11:21 pm
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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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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!

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.

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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Chapter 3, Dark Reunions




Vaylin launches an attack on The Gravestone sending Koth into hiding and the ship guarded internally by Skytrooper Droids.


I have to admit I love that they are droids. As a kid I used to think TKs were droids. I mean they just got trashed and I didn’t understand that people could do that to so many other people. Innocence of youth yes? I still avoid mobs in games where I can. Stay on target, do no more harm than you need too. Sure it helps me avoid hand stress as well 🙂


The fact that they are droids I hope will be addressed in future chapters, as of writing I’m not yet finished, but I know enough story to have Ideas(tm) about what this should mean.


So the next step is for the Commander to get the Gravestone back, Vaylin and SCORPIO are on board.


One of the first missions cause me a lot of frustration hands wise. It’s another mission where you pilot a vehicle, well mini-vehicle, and so have restricted abilities/movement (the camera zoom changes when you change size be it larger or smaller- and it can automatically move in/out due to what the environment is like directly behind you.) This time you pilot a mouse droid.


A concept I adored. I loved loved loved the idea as the mouse droids in the OT do great focus pulling and I love their reactions.


Unfortunately I do not have any screencaps of this mission. However another blog does:


http://fibrojedi.me.uk/swtor-kotet/dark-reunions-chapter-3/


On the frustrating side I found the Skytroopers were not just triggered by the mouse droid in the area suggested, but behind them as well nor did it feel like the electric shock actually had a range of 3m. This may be in part down to my lag due to my wifi connection and the cast time (it’s 11 months until we get fibre- most of the suburb has it just not where I am!)


The video in the link above shows there is however a clear path where you can avoid the Skytroopers and I even managed to avoid needing the ability at all! So the only real issue for me to replay now  is how the camera zooms in and out, I found it a bit painful (physically) to manage my mousing and keyboard. But ultimately this is a case where there is the option to evade! Woot!


This is also the chapter where we see the full effects of Vaylin’s training, as seen in the trailer, as we confront her soon after.


It’s a difficult story, especially if you have experienced anything remotely close in reality-being manipulated at any age, but especially in formative years- I appreciate that later I can call Valkorion out on what is revealed. On a personal level I never wanted to use this against Vaylin, for everyone’s safety? That was tricky. It challenged my values and I do really appreciate that. I may not even like what I chose. But choose I did.


The next mission step was also physically trying.


In order to stop the Gravestone and the alliance ships outside, you have to destroy power Cells against a timer. Usually timers are quite long, enough to not only do the mission but to figure out how to do the mission. This time there was less wiggle room.


As per a previous post my tendons are all a bit borked. This mission pushed them to the point I had to quit. Well this and the mouse droid combined.


What made it hard was how dark the environment was and not being able to environmental hazards to trip on/get caught on. I did manage on my third try. I have recently reset my monitor (AoC) and I may have to adjust graphics again. But it’s not possible to do so during a countdown 😉


The blogger linked above also had the same physical pain, and difficulty on this mission. I’m glad to hear you can do this one grouped. That is an option that is not always available to me, but at least I know I can ask a friend to help on their account at some stage 🙂 The timer doesn’t start until you go into the corridor so this should mean being able to be AFK and go back to the area start.


The end of this story though? Chills! And vindication for my interest in SCORPIO’s story.


 


“The Gravestone wants to go home.” SCORPIO basically is very much not acting just out of self. She freed the GEMINI, gave them autonomy. They are ancient, and understanding how they came to be controlled should be something the Commander of the Alliance should want to understand too.


History repeats after all.

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



Oh my gosh! I have a level 65ish Sith Inquisitor and much of this story reminded me of parts of hers.


Darth Acina is a joy. I have completely become a fan of hers.



Dialogue in the upper corner perfectly encapsulates her dry humour, and being pretty real.



And again. This may count as flattery and my girl does not like flattery. So you can probably imagine what she thinks of all the lovely things Valkorion has to say about her suitability for the throne…


But this made me grin for real. The positive aspect of the Sith Code. The code itself doesn’t really say you have to destroy your enemies but it does imply it.


Peace is a lie there is only Passion (passion=/=anger necessarily!)


Through passion I gain strength (strength of resolve?)


Through strength I gain power (self determination?)


Through power I gain victories (personal victories?)


Through victories my chains are broken (ahhhh…. freedom. Of thought, of autonomy. The freedom to choose dark or light.)


Anyway. When I say I know the Sith Code well it’s this path of thinking 🙂


 


There isn’t much different in this chapter in terms of gameplay, it feels very nostalgic and so I think the gameplay may reflect that. We are talking Empire vs Republic here so yes, it feels very much like a tribute but also reminder of what the alliance really means.


We are asked by the new Empress of the Sith wanting to join the alliance. One of her Ministers insists of reminding everyone he is indeed a Minister and it can be fun to provoke him into repeating this.


 


The political intrigue was fun, pretty obvious what was happening if you pay attention. Soon after this meeting you and the Empress wind up stranded in a storm in the wilds of Dromund Kaas and assumed dead. AT least that’s what the reinstalled Republic Chanceller, Saresh, would have everyone believe.


Here we have the classic film foreshadowing (Saresh trying to convince the alliance to listen to her and suddenly your companions face troops from the opposite faction?)




I hear you Lana.


More dialogue where this nostalgia is front and center.


 


Speaking of probable foreshadowing….



 


The end is very satisfying. Just as Saresh is making her big speech and powerplay on Odessan, you walk through the crowds. …



 


Again, the facials and the timing make this scene a great payoff.



I don’t choose the light choices because they are easy. But this scene is all about how you will be seen by the alliance. You are in public, you can be seen as someone who uses fear or inspiration to lead.


 


I loved this chapter, it will definitely be on my replay list! There were puzzles and traps but I felt I had enough resources and options to make the gameplay work for my health issues.


 


 


Chicken walker funtimes.


I will be spoilering, but also talking about the new game play and how it affects my ability to play. I love challenges. But there are some things that are very much locked out or create a different kind of tension than the rush of tackling a challenge 🙂



Chapter 1: Wrath and Ruin (link to another spoonie gamer blog)


First up, the story was amazing, sad, but  built on that long term play and so that connection to Voss and the people and what was happening in real time in the story. I was invested from the start.



We arrive on Voss to see it burning.



You start with limited abilities, as was the case with KotFE, but the actual difficulty of this area is scaled well in story mode to have a fairly short run through. This also is a chance to check how your UI matches up with intended rotations. I have my UI so I have the best view of the area including spotting mobs- the minimap does show them but this helps with immersion.


 



Okay so I wasn’t paying full attention so the remote mines, which are named mines, got me once. I do choose to scale my UI down so as to view everything so that is on me. They are on the map and they do have nameplates. The area is also relatively free of obstructions which makes running around to target them possible. My fingers make this kind of zipping around difficult, so I appreciate when the environment doesn’t get in the way!


 


At this point if you haven’t already been aware, the Voss we knew is in the middle of being destroyed. The planet. So





Right in the feels.


Board the Storm Rider

Reach the Shrine of Healing

Defeat the Zakuul Walker



“No. Pilgrimage path is the only way.”


This was the first point where I had difficulty. Well that makes it seem like a purely skill issue. But a hint, the above is technically true but you can avoid some mobs by getting creative with your path. Not all but some. The trick there is of course some mobs may be scattered in ways that make it harder to gather them all with your new ability.


 


In this part of the mission you operate a walker and you have limited abilities. No healing- and the repair stations are in regions where mobs can still target you. Once you take damage it stays. You can be targeted while in the repair stations also.


 


When defeated you go back to the start area. Fortunately the mobs you did defeat don’t appear and over time you can clear the map if you are in the same situation. I am not sure how long you can be AFK to rest hands, I know in KotFE there were times I was sent a heck of a long way back in a map. So it’s not something I want to test.


The area is not very large so this repeat play was at least possible to work around. It took a bit of extra time, was frustrating but I had a reasonable idea of the time that could be involved and was able to balance my time playing vs time away from the keyboard.


 


From here it’s mostly normal gameplay, some click this to get that, some mobs.



Though the story did get very intense. At this point I was spoiler free and was just hoping and hoping and hoping …. I did a little spoiler hunting to see if there was a possibility of what I hoped would happen.



And Valkorion is still messing with your head.


By using the truth.



And SCORPIO seems to be doing something I suspected. I knew she was not Vaylin’s lackey and that she was following her own story. What I did appreciate is how important her story is. Any feelings of being betrayed pale when you realise what she is trying to do.

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.


 

or delayed spring cleaning, I decided that as I have too many obsessive projects on the go I needed to just tidy up my workspaces as well as get rid of projects I no longer think I can finish.


It’s very warm right now and my health has suffered so much this year that I am also taking the time to tidy other parts of my life.


So I have a lovely sipper cup to drink water from as well as green tea, staying hydrated has been a fine balancing act.


And I have also installed Mint on my netbook. It actually runs again! It was sluggish with Win10 but the anniversary edition broke it. Blue screen of death within 1/2 hour of use. Updating plugins and codecs took a while but wow. I also had to fix the wifi settings but that was a really easy fix (setting “ignore” for something I don’t think I have a choice in 🙂 Most of the suggestions included coding and just not right now. I can do it but prefer to not!)


And I’ll soon have a nifty controller! I’m getting a console for Christmas/Birthday!!! The hype is real. My hands are going to need more care than ever in the next few years so this is a big step. I can save up for extra space (SSDs only from now on, seriously) and a vertical mouse. Now those are pricey! All options for accessibility are. But this way I can save 🙂

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My poor blog!

Nov. 23rd, 2016 11:41 pm
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I’ve been doing things, just posting through instagram as it’s an easy app. to use on my itty bitty phone, it can cross post (can’t be crossposted to, which is annoying) so there is a fair bit of backlog!


Before I do a few updates on the state of the current projects I need to get my Elsa cape redo done. So I’ll be spending the day pressing the appliques 🙂 Also the cape fabric which is what is not so fun!


I will be at the Farmer’s Santa Parade this weekend, I wanted to go to the MoTaT time travellers event on Sat but I am in that fragile zone that makes that a bit of a difficult choice.


I can’t really risk another short prednisone bump for general health reasons but I really need it. As I was told by my rheumy to double my Arava but didn’t prescribe it I need to bring my letter to the pharmacy to get my next dose early. LFN has a long half life so it should be okay if I go in tomorrow.


But because I am not controlling the disease as effectively atm I am more likely to trip some inflammation with activity that goes beyond a limit I can’t actually find without going past it 😉

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Over the last few days I have been quiet here as I have been a bit busy and tired in what feels like equal proportions! It’s been skewed more to tired, strangely enough. Though I have four events and two hospital daystays in the next month so yes still to being busy. All charity events btw. Tis the season!


My Elsa cape is ready to press- this time I get to avoid side seams! But it does mean being very very careful indeed with not stretching the fabric out as I press. Also it seems heat changes the blue tone and shifts it slightly to a more neutral than purple tint!


Did a display this weekend and got to see inspiration bloom in the eyes of a few people who had only really seen characters in film/tv/games and getting to be hands on with the materials was just the start of what could be a long interest.


Also spent the last two days wrapping my head around a costume that I should have seen before but this year has been very… well not much has panned out well and my goals have mostly shifted and so I’m playing catch up.


I found the maker of said costume and the final pieces of the puzzle fit so I sent a thank you email as I have not been this inspired in ages.I would say obsessed, but yeah it is really firing up some grey matter that really needed a bit of a prod! So my next year is definitely filled with projects and inspiration!


Trying to find a maker of a particular garment in a film can be a challenge. Unfortunately google is fast becoming a tool only to buy ready made gear or is flooded with pinterest links (usually not the main pin either but one of what may be hundreds of linked pins!) So it was a bit of effort. I know my own site is starting to fall again in hits from sites WP recognises so it means very soon I’ll be trying to do some rearranging of my site to make it even easier to navigate and find information. I mainly want to tweak the search php file to display full posts not previews- for some reason images don’t appear in previews which makes it less useful.


And finally I have been a bit busy trying to find quality of life options to be able to continue to use my computer and in doing so have been joining up with accessibility social networks and trying to get ideas on how to really make my site more accessible. I am not sure what the overlap is for my site, but it’s not like I’m the only person who is looking for costume information and having accessibility issues 🙂 So I may not be able to do much to the huge number of blog entries but I can try to make my thumbnails have alt text and use the footer for page lists/menus in case my menu is not easy to navigate with specialist browsers or devices.


I’ll be looking for specific requests for img alt text, and will get it checked by sites that offer to look for issues.


I do very much try to avoid having ads, or anything other than the information right there. I know some readers get stuck in certain kinds of layouts. Especially pop up ads or content off site in general.

 


The media hypes up medical advances as much as anything, in fact often even more. And those of us with chronic illness are often caught between the hype and people who care about us as well as people wanting to be the first to share. It is exhausting. Because I am indeed always searching for information about therapies and I often have to divert focus from that to try to not just say that the media has hyped something beyond any real help but to also prove it. And to do that I often have to source the original papers and read very dry very long papers and hunt down reviews. None of which is all that easy to appreciate outside the field.


 


So what can you do as someone who cares? Take five minutes to do a bit of research. It’s a sign of respect to us that you will put that little bit of extra thought rather than just throwing a link at us. That’s it. Give us the same level of respect you might do when hearing the latest news about a film franchise.


PubMed is a really easy to search tool that lets you find at the very least the abstracts of a vast number of papers, it is compiled by the United States National Library of Medicine. It may not tell you about the quality of the research but it is by far a better source of information than the media. 


If you are feeling bold you can even look through the journals these papers are published to. Annals of the Rheumatic Diseases is a great source. I also am subscribed to several Nature alerts including immunology, Medicine, and genes and immunology. So I am very well covered for getting the latest news!


 


 


Regardless of the therapies we are on, please do trust that we are being proactive, that we are trying everything we have access to.


We are also the ones who have lived with our disease and our therapies, so we probably are more informed about a treatment than someone who doesn’t in fact need it.


I am proactive. But I can only be proactive so far. All the medication I have been on has had a tremendous delay between trials, approval, and my access.


 


 


Therapies pass through many levels of testing before being offered to patients. Even clinical testing trials are often limited to specific gender or a combination of age and gender. Many of us simply cannot participate in trials, and sometimes that comes down to disease that is too active to halt current therapy to trial.


 


Rituximab was trialed in the mid to late 1990s. It’s an antibody that targets a specific type of B cell that is very active in several cancers as well as several autoimmune diseases. This makes it both effective and relatively safe compared to most other treatments. It doesn’t obliterate the immune system, nor does it slow down fast replicating cells (methotrexate is used for autoimune disease as well as cancer treatments as in both cases cancer cells and immune cells include very fast self replicating cells!)


It was trialed in 2004 on Rheumatoid patients, and recommended in the USA in 2006.


My first access was in 2014.


My third yearly dose is in two weeks. Four months from this I will get my final evaluation to decide if I’m allowed this treatment again and at a therapeutic rate. This is because I have refractive disease and it pretty mush resists all treatment. But this therapy works for me, in a limited fashion and for only about 6-8 months at a time. But I have to fit a very specific criteria to still have access after this round.


Continuation – rheumatoid arthritis – re-treatment in ‘partial responders’ to rituximab – rheumatologist

Re-assessment required after 2 doses

All of the following:

1 Either:

1.1 At 4 months following the initial course of rituximab infusions the patient had between a 30% and 50% decrease in active joint count from baseline and a clinically significant response to treatment in the opinion of the physician; or

1.2 At 4 months following the second course of rituximab infusions the patient had at least a 50% decrease in active joint count from baseline and a clinically significant response to treatment in the opinion of the

physician; or

1.3 At 4 months following the third and subsequent courses of rituximab infusions, the patient demonstrates at least a continuing 30% improvement in active joint count from baseline and a clinically significant response to treatment in the opinion of the physician; and

2 Rituximab re-treatment not to be given within 6 months of the previous course of treatment; and

3 Rituximab to be used as an adjunct to MTX therapy; and

4 Maximum of two 1,000 mg infusions of rituximab given two weeks apart.


So let’s hope I meet this as imperfect a solution as it is it is the only solution right now and for the forseeable future.


I can keep an eye on trials but they all have this same delay between trials and approval and approval and acess.


 


 


 


 

I am pretty open about what conventional and alternative therapies I use and how they impact my life- sorry in repairing my blog this year I have also lost a number of tags so will go back and tag all my health posts in the near future.


But I do also make daily care decisions so thought I’d sahre some.


Shower: Regardless of the time of day this is my first real therapy. The heat from the shower is so important to me moving I cannot even begin to express how lucky I feel to have this nearly every day. We are on a low rate so we get a lot of days where our cyclinder is disconnected during peak peariods and that has a pretty profound impact on how I can manage for the day.


For my disease and how it works in me applied heat offers immediate benefit. I am not sure why, you’d think it was too similar to inflammation to work, but I suspect it opens up the tiniest blood vessels to help with circulating the build up of immune debris. Many find ice helps, and I suspect it’s because it slows down migration of immune cells into the area, so that is a really interesting contrast in physiological reactions!


My shower is the time where I can brush my teeth and wash my face very easily, and I do both towards the end of my shower- it takes a while for my hands to warm up enough to do this and yes, laws of physics apply and there is a fairly rapid cooling off of extremities once the shower is over!


But it’s also a chance for my spine and ribs to also get mobile and that helps make breathing easier.


Food: Ah. Most people offer a lot of advice on diet, for me there is no difference in my disease activity based on diet. I have no real allergies or intolerances except some annoying reactions to acidic food or sticky starches.


I have friends with both allergies and intolerances and I do not share any overlap of symptoms. I am very lucky to have lactase persistance as milk is amazing for helping with the possible/maybe Sjogrens that often accompanies RA. I can start the day with a milky drink and not you know, choke on my medication or food 😉


I do try to stick to food that has not been heavily processed. I am though very lucky to live where I do that I can have this option.


I do also try to get protein- B12 is a big issue for me it gets depleted very quickly, totally disease related as well as medication. I used to be vegetarian (zero iron or B12 issues at the time) and last year started reintroducing meat. I cannot tolerate red meat- I notice health issues fairly rapidly, so I have found a balance. I have a lot of salmon, and I occasionally have sardines. I am not sure if it is benefiting my joints but I haven’t really had an issues with iron or B12 so there is a very definite health benefit there. I try and find the options with least environmental impact and I am very lucky again that this option is there.


Ergonomic factors: I have a super lightweight mouse for my computer. It’s a cheapie and I have cleaned it out a few times but it only has an impact in terms of clicking. I have my desk as a height where I can rest my arms on it and I generally type sideways and with frequent breaks even while in the middle of a sentence. I rely on error detecting in different apps and am really happy that Chrome offers spelling options. I prefer that to auto correct so I can learn what errors I regularly do so I can try and avoid them.


I like to sit with my knees pressure free so this means I will put cushions on seats and I rarely sit on the sofa. This means I’m usually sitting upright or in bed or standing so it can be a bit of a challenge energy wise. I find myself having to switch righ on or right off. So that is an area I’d like to explore.


There are more, so I may try and think of a few.


Oh mugs! Ugh, I have a lot of trouble holding mugs so I really love my tiny little plastic tumbler that works for hot and cold drinks. On the flipside the heat from hot drinks in ceramic mugs on my fingers is wonderful!

Well, sort of. I mean I had a specialist appointment today- which is pretty much treading water. Kind of, so do you want to have daily steroids again? Do you want to double your current medication? Okay do you want to go on another medication that will mean you need to see an ophthalmologist regularly?


I have been on all of these previously btw, it’s a case of now trying combinations. Yes, we have reached current range of treatments. But it could be worse. There are people in their 90s with this disease who cannot go on anything (alternative meds included) because the side effects are so much worse than the side effects of prednisone, think liver failure and very fragile skin and already slowed down immune systems. I might have kind of had a change of heart in the office over that because one day that will be me. I am making those hard calls now because one day I won’t even have a choice between a few not ideal options.


So I made a compromise- I’m not doing daily steroids, I will start doubling my daily dose of leflunamide. I’ll see what side effects I can tolerate.


I just don’t want to go back on steroids. It’s a stress on other systems than just the immune system. It’s one thing to deal with repeat infections another to deal with them and added heart and adrenal funtimes.


So.


The hydrochloroquinine does apparently have soft tissue benefits- so nodules could be lessened 🙂 I’ll see her again in four months. And if I need to


Also, Rituximab infusions are booked!! They can be done in an afternoon now- I only have a low blood pressure issue so that’s fairly easy to anticipate and correct 🙂


 


But I also am seeing the hand surgeons again. oh poop. I may have to have that changed, I think I’m booked in on the same day as one of my infusions. I will call.

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I realise that I write about my health a lot, but my disease has such a misleading name, and has caused confusion for patients with RA and with OA that I think I need to try and clarify just why I am on drugs used in Chemotherapy and to treat disease people think of as totally unrelated. Other inflammatory diseases that cause joint inflammation as a symptom are also covered by Rheumatologists so it can be very confusing, and very worrying to patients who do not have these diseases t be treated by the same specialist!


I have Rheumatoid Disease. My disease is a systemic one, all starting with  my immune system being derailed and turned against a tissue that is very common in the body: synovium. This not just in the joint spaces but around tendons.But it also can be active in other tissues.


Most of these are a direct result of the one disease process, so they all respond to a greater or lesser degree with the Disease Modifying drugs used to control inflammatory diseases.


http://www.arthritis.org/about-arthritis/types/rheumatoid-arthritis/articles/rhemuatoid-arthritis-affects-body.php


(I have tried to summarise a bit so I do recommend reading this page in full)


Skin


Nodules- (I have these- seem to be devolping more) The same pathology as in the joints, about 50% of patients develop them  Can be controlled by some DMARDs


Vasculitis- (I may have a spot of this, would need to get it confirmed) one of those diseases I mentioned above! Inflammation of blood vessels


Ulcers– (mine were caused my Methotrexate) again with the immune system directing this disease process you have cells being killed and bacteria can take advantage of wounds


Bones


Thinning- (yes, I get infusions every 18 months for this, also Vit D, and I keep up calcium in my diet) Not just at active sites but throughout the body. Goodbye stable teeth, hello gumloss. Steroids speed this up, but can control the disease systemically as well. Exercise can slow and speed this process up! It’s a difficult balance.


Eyes


Scleritis- (probably not)-weirdly scleral lenses can potentially help treat this.


Dryness- (yes, I use very viscous eyedrops) RA can lead to other autoimune disorders, Sjogren’s is one.


Mouth


Dryness- (very much so, I stay very hydrated and drink a lot of milk and sour drinks to stimulate saliva)- again could be Sjogren’s. I also have terrible oesophageal dryness and I can have terrifying moments of my food getting stuck and the spasms that follow. Mouth hygiene is super important- finding a balance between brushing enough and toomuch can be difficul


Lungs


Inflammation and scarring.(maybe?) Up to 80% of patients.


Rheumatoid Nodules. (would never know) Same as those in the skin.


Heart and Blood Vessels


Atherosclerosis- (no, but this is part of my health that is helped by diet and exercise, but again by my medication) the disease can cause inflammation of endothelial cells, this can cause more absoption of cholesterol!


Heart attack and stroke- (ditto, again, lower the risks through what I can control) One study shows 60% increase in risk after one year of disease.


Pericarditis- (I don’t think so.) Again, the disease can cause inflammation outside the joints and this includes the pericardium!


Blood


Anemia- (my biggest ongoing issue, getting enough iron but not too much) Inflammation uses iron and in RA this process also causes another system check, which is to store iron in the joints so that it can’t be used. It is the body trying to damp down the inflammation.


Blood clots- Inflammation can cause an increase in platelets.


Felty syndrome. Very rare, but real risk of developing lymphoma-


Nervous System


Pinched or compressed nerves– (yes! I am dropping and throwing things every day now) With joint swelling and deformations this can happen. It’s not a direct result of the disease on nerves through!



It’s not that these can happen, it’s how frequently they occur and how to treat them.


This is why I am vigilant about any health weirdness and why I get very frustrated when my disease is dismissed as a personality type (still happens, and may be why I have trust issues with switching medical specialists) and as not really that serious!

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