Heat Packs at Lidl (Peat Packs/Moor Mud)
This might be useful to someone, Lidl have some MoorMud heat packs coming in on the 21st of February 2011. I had one years ago (it eventually burst and boy was it scalding!) but it was excellent, by far and away the best heat pack I’ve ever, ever used. They stay hot for hours (and I do mean hours, the one I had was still warm 5-7 hours later). They are 1000x better than any natural “wheat pack” or “cherry stone” pack, mostly because they keep their heat so long and feel so squishy. The only downside is if they burst, so I’d never trust my kids with one, oh no! I want to keep them all for myself…
http://www.lidl.co.uk/cps/rde/xchg/lidl_uk/hs.xsl/offerdate.htm?offerdate=18276
Food, Recipes and things
Here are a few links I want to remember
An online convertor
http://www.dianasdesserts.com/index.cfm/fuseaction/tools.measures/Measures.cfm
What is creme fraiche?
Soured cream that doesn’t curdle when you heat it.
What is the difference between evaporated and condensed milk?
Evaporated milk is twice as concentrated as “normal” milk. It is sterilised before canning. Can be used to make custard or sauces,pumpkin pie, rice pudding or fluffy jelly.
Condensed milk is evaporated milk with sugar added. It is not sterilised, the high concentration of sugar preserves it. It is three times as concentrated as “normal” milk. Often used to make cheesecake, banoffie pie, toffee, caramel and fudge.
http://www.milk.co.uk/page.aspx?intPageID=43
What is the difference between rasins, currants and sultanas?
The variety of grape used to produce them.
Raisins – Moscatel or Thompson seedless – white grapes
Currants – dried black grapes (originally from Greece)
Sultanas – dried white grapes (originally from Turkey)
Parenting Books – What do you suggest?
One thing I do when I’m pregnant that I don’t do at any other time is read books on parenting. I’m not sure why, but there is something about being pregnant that makes me want to know what other people think.
I read widely but I can’t say I follow one specific “approach” or “method”. I like to experiment with different ideas and see what works for us (after all, there is no bigger biology experiment than your children!). I think I’m a bit of an idea junkie, I like collecting ideas and theories I also really like practical suggestions, real life anecdotes, sample conversations and tips. I also prefer that some of these fashionable theories (and most of these books are just that, fashionable theories) to be backed up by some research other than the “well I tried it on my kids and they’re perfect”.
What I would really, REALLY like to find is a book on Quaker parenting, obviously no one quaker parent is going to have all the answers, but something like Quaker Faith and Practice that has lots of different views would be REALLY useful. Of course there are passages on parenting in Quaker Faith and Practice, but I’d like something more in depth, something more specific to different age ranges and preferably something practical that you can dip in and out of.
I have never believed my children are part of me, they have always had their own unique spirit and I find it really odd when parenting books go to great lengths to point this out as if it’s “news”. I wouldn’t want a Quaker book on parenting to focus entirely on the spiritual, on a day to day basis, dealing with behaviour and learning to get on with others is what takes up most of my time and the more ideas I have then the more options are at my disposal when things go wrong,
Books I’ve read and like!
How to talk so kids will listen and listen so kids will talk
Buddhism for Mothers of Young Children
Plain Living – A Quaker Path to Simplicity
Books I’ve got some ideas from but wouldn’t necessarily read again
What mothers do (especially when it looks like nothing)
The contented little baby book
On my “to read” list (if every day was 48 hours long and I had time to sit and read!)
Positive parenting for a peaceful world
Phases of childhood – Growing in Body Soul and Spirit
Buddhism for mothers with lingering questions.
Parenting and Arthritis
So what about the other part of my life? How do you combine being a parent and having arthritis. There are very few books on this. Diseases like rheumatoid arthritis and psoriatic arthritis DO affect women of child bearing age. As well as preparing for a baby you also have to prepare for a flare of your disease. It raises the whole “should you breast feed or take medication questions” and everybody and their dog seems to have an opinion on this. The one book I’ve read (you need to order it from Australia) is called “Arthritis, Pregnancy and the Path to Parenthood” by Suzie Edward May. I’ll write a separate post on it, the book was useful but for me I’m still looking for something that describes the emotional side of being a parent AND dealing with arthritis at the same time.
So. do you have ANY books you can recommend on parenting (I don’t care if they are general, quakerly or arthritic, I’ll read pretty much anything!)
Psoriatic Arthritis in my Hands & Pregnancy
Well, it’s been a year since I last posted photos of my hands. One year on, I am pregnant, in my third trimester (33 weeks to be exact) and my arthritis has been in remission for several months. I don’t have any joint pain. I don’t have any swelling. The joints that have been damaged still have a limited range of motion, but they don’t hurt!
I thought I’d post these pictures and compare them with July 2009. The psoriasis in my nails is actually worse than it’s ever been (not that I’m complaining, sore flaky nails don’t bother me nearly as much as fingers, hips and ankles that don’t bend!) Although my joints are in remission, the skin plaques are the same as they’ve always been no better or worse with the pregnancy. My digital camera is almost 10 years old and you really can’t pick out the nail changes to clearly, but the lack of joint swelling is pretty obvious. If only I could bottle whichever pregnancy hormone has put the arthritis into remission…
As always, if you want to use this photo, contact me first.
New Research – Proteins in Psoriasis Plaques.
This study interested me, it’s nice to know a little about what is different between normal skin cells and psoriasis skin cells.
New research promises to pry some long held secrets from one of humanity’s oldest known diseases. Scientists at Rockefeller University have discovered how to parse the most troublesome cells behind the debilitating skin lesions in psoriasis and have identified several distinctive markers that suggest how they might be contributing to the disease
Dendritic cells, which are believed to be fundamental contributors to the diseasedendritic cells expressed a host of genes that differentiated them from the resident dendritic cells. Among them were molecules known as TNF-related apoptosis inducing ligand (TRAIL), Toll-Like Receptor (TLR) 1 and 2, and others that could fuel inflammatory pathways
Psoriatic Arthritis – Things to do when your feet hurt.
Okay, just like the “Things to do when your hands ache” this post is for my own benefit. If I’m having a bad day then it can be hard to think of things to try, at least if it’s written down I’ll have some hope of remembering the good advice I’ve received. Actually, I plan on writing another post on all the BAD advice I’ve received, because I’ve heard quite a lot of that too. Anyway, much of this post will overlap with the one on sore hands, but, if my hands hurt painkillers are top of my list. I’ve yet to take a pain killer that dulls the burning pain in my feet. Obviously there are some I haven’t tried but for the constant, Achilles tendonitis/plantar fasciitis I’ve not taken anything that helps and I’ve had sore feet for more than twenty years.
Things I’ve tried that help sore feet
1 Sit down
The only thing that works. Not standing. I’ve been moved on from the steps of art galleries and museums all over the world for daring to sit down when I just couldn’t bear to stand any more. That’s the trouble with being young and having arthritis, you look perfectly fit and healthy so it is just assumed you are sitting because you are lazy or selfish. My feet started hurting when I was 10 years old, the arthritis wasn’t diagnosed until after the birth of my first child, in my late twenties.
2 Pacing
The idea of pacing is that you sit down before it hurts, I’d like to say I do this but I don’t. I’d never get anything done, but at least in theory I know that I don’t need to wash all the dishes in one go and can work for 10 minutes, sit for 5 minutes and then get on and do another 10 minutes. Just as with the sore hands I picked up these tips from Living Well with Pain and Illness and using the Gymboss timer helps.
3 Shoes
I don’t like shoe shopping, having spent most of my teenage years trying to find shoes that fit the (useless) over the counter orthotics suggested by various GPs, I developed an aversion to shoe shops. Clearly I’m missing out on some valuable part of the female psyche, but I usually only have 2 pairs of shoes I can wear at any one time and they have to do all occasions (including my own wedding!)
At first I loved Birkenstocks, expensive but comfortable and had lots of room for orthotics and funny shaped toes. When I eventually got to see an NHS orthotist (after having sore feet for 20 years) he was delighted that I wore Birks because it made his life easy, the custom orthotic was easy to fit as the shoes were deep and practical. A few years ago I gave up on the orthotics when I discovered MBT shoes. These have a rocker in the sole and I discovered that I could walk half a mile, in relative comfort and use a lot less energy to do it. I was a convert. I wore them religiously for years. My first pair lasted a couple of years, good job too at over £100. My 2nd and 3rd pair didn’t fare so well, they were knackered within 6 months and I could not afford to keep replacing them. The squashy bit in the heel would wear unevenly on one side and this would give me hip pain. It was a relief to discover the hip pain was being caused by worn out shoes and was NOT the arthritis progressing, but anyway, I gave up on the MBTs, my bank balance couldn’t handle it.
Next I tried Skechers Shape Ups, same idea as MBTs, rocker bottom soles but for less money. I still wear these today. So what happened to the custom orthotics? Well, I still have them, the orthotist put a rocker on the bottom of my Birks to combine with the custom insole, but I never found that as effective as the MBT/Skechers. I think the rocker bit is in the wrong place, but I’ve moved and haven’t seen an orthotist or podiatrist since. Anyway the skechers are working for now so I’ll stick with them. One of the “rules” for plantar fasciitis is NEVER go barefoot (easier said than done), so in the house I wear a pair of Birk Noppies, with lots of knobbly bits on the soles. I’m sure millions of people would find them uncomfortable but I think they are great and have been wearing them for more than 10 years. Well meaning relatives who give me “novelty” slippers for Christmas are always disappointed to see me in my hippy sandals.
4 Walking Stick/Cane
Oh this is a big topic. Yes it helps my feet but it hurts my hands. I’d rather have sore feet than sore hands. For me personally, it hurts my pride most of all. With a few notable exceptions (work conferences), I’ve only used a stick on holiday where I can be sure that I won’t bump into anyone I know. For a start when you are a fit looking teenager and “all” that’s wrong with you is a sore tendon its impossible to explain why you would “want” to use a stick. Especially as tendonitis and plantar fasciitis are self-limiting conditions (i.e. they should get better on their own). Trouble was my tendonitis and PF weren’t self limiting, they haven’t gone away and they were caused by auto-immune arthritis. With hindsight, I should just have used a stick when I needed it and not cared about my family and friends comments but hindsight is a wonderful thing and even now I find it hard to use a stick, when I KNOW I have arthritis and my joints are swollen like grapefruit. For me this subject has best been summed up by Rheumatoid Arthritis Guy (a true super hero), in his post “On Becoming Visible”. The trouble with using a stick is the vast majority of people don’t know I have arthritis and if I used a stick I would have to explain why and I’m not ready to do that (I’d rather be in pain, go figure, what does that say about my messed up psyche?)
Anyway, my first stick was too long, it was solid wood and it was beautifully carved. I loved it. I could walk for miles, in fact within a couple of days I wore out the rubber end and discovered that it wasn’t a standard size and that those rubber ends were actually very useful. After a few days I realised how much I was using it when I developed an angry welt on my hand and all the bones felt like they’d been crushed. Yes, yes, I should have gone to a physio, got a proper sized NHS stick with an ergonomic handle. But at that point the physios were still telling me the reason I had the tendonitis was because I wasn’t doing their exercises and if only I would be a “good patient” I wouldn’t bring this pain on myself. Anyway, I was on holiday, my pride wasn’t up to using a stick at home. I soon solved the problem with my hand by using a lovely pair of mountain biking gloves with a padded leather palm. I loved those gloves, sadly I leant them to a friend who needed to use crutches for awhile and never saw them again. They looked a bit like this.
My next stick was a more considered purchase. I went for one of those leki hiking poles, a lot more trendy. The handle was made of cork and more comfortable and the suspension took a lot of strain out of my wrist. It’s also a damn site easier to get replacement rubber tips for the end. However I would still only use it on holiday. Next time my ankle flares I may be tempted to bite the bullet and explain to everyone I know that I have arthritis, I have a sore ankle and the walking stick helps. Having said that I spend most of my life pushing a pushchair and I don’t see how I could combine the two, I’m actually dreading having to get rid of the pushchair, it’s great having something to lean on (and no one knows that I need it more than my toddler!). It also doesn’t attract any rude questions or pitying stares. Obviously you need to have a toddler in it or it would be a somewhat less effective disguise 
5 Heat Helps
My feet are cold even if it’s 20 C out, they also go vivid shades of purple/red and white. It has to be seen to be believed. Heat helps ease the pain, but it isn’t really practical to go about your day with a hot water bottle strapped to your foot. I like my microwave hottie, it’s great for sore backs and hips, but only really good for sore feet if you are lying in bed. I think that is why I like hot baths too, a bath relaxes all my muscles, although it plays havoc with my psoriasis.
6 Relaxation/Meditation/Visualisation CDs
I have a few of these, some have exercises specifically for your feet and legs, I think I’ll write a separate post on them.
Things I’ve tried that haven’t helped
1 Nightsplints
The idea of a night splint is that it holds your foot in an L-shape overnight, this keeps the Achilles stretched and should reduce the “first step” pain in the morning. The trouble is I can’t sleep with them on and no sleep makes me more cranky than sore feet, so the night splints have been consigned to the back of the wardrobe.
2 Physio
Yes, I understand the theory that I need to stretch my Achilles. Years worth of toe raises, wobble boards and hamstring stretches have utterly failed to bring me any benefit or relief and quite frankly life is too short to pick marbles up with your toes or roll bottles of ice under your feet. Ultrasound never helped me either. One thing that DID help me were the “Personal Foot Trainers”, basically they are two poles with plastic bits on the end, you push your feet towards you and away from you to exercise different muscle groups. It definitely helps and if you stick at it for a few months your feet will feel stronger (mine did and I thought I was a hopeless case), the idea is that you do the exercises in bed, before you stand up in the morning. The trouble with this is these exercises only help if you do them (!) I have three kids under 5, the days of exercising in the morning are long gone, maybe when they kids are a bit older I’ll get back to using them.
3 Cold or Contrast Baths
Heat helps, cold is agony. While I understand the theory behind plunging your feet between hot and cold buckets of water, the actual act of sticking my feet in a bucket of cold water makes me want scream. I tried it and the costs far exceeded any benefits. That’t not to say it won’t help you.
4 Insoles/Arch Supports
I’m not talking about custom orthotics here, I mean the things you can buy in Boots. The various gel pads, heel lifts, arch supports and insoles. I’ve tried heaps of them. Several GPs seemed to think that these would “cure” me. How I wish that was true. Sadly none of them worked. I even saw a NHS podiatrist once (waiting list 1.5 years), who took a pair of over the counter insoles and stuck a bit of cork to the bottom of the heel. He seemed to think that would be the answer to all my problems. I can’t begin to tell you how wrong he was, they gave me the worst knee pain I’ve ever had, Ipersevered for weeks but eventually gave up. They didn’t even make it to the back of the wardrobe, they went straight in the bin.
Things I haven’t tried but I would consider if I have a flare
1 Crutches
Yes, even more obvious than a walking stick, but easier on the hands. Not really practical when you have small children to chase after. I do like the idea of crutch covers (skins to stretch over your crutches so you can change their colour), crutch clips/magnets, so you can pay for stuff in the shop without looking infirm and useless as you struggle to hold two crutches and a purse (screaming toddler and tutting onlookers optional). In fact there are loads of crutch accessories here, some of the stuff, like the crutch tips/ferrules are stocked in the UK but I’ve never used this company. Chic-aid and Funky Arthur both stock some cool coloured crutches and sticks with ergonomic handles and are in the UK.
2 TENS
1 A TENS machine (perhaps with a TENS sock?) Llyods Pharmacy have some reasonably priced TENS machines.
3 Hydrotherapy
I don’t even know if there is any hydrotherapy in this area, I’ll need to look into it, chances are it will be over a hundred mile round trip so the childcare costs alone would probably make it prohibitive.
4 Perching Stools / Ironing Stools
I know having a stool in the kitchen would help but they are all so UGLY. Plus the kids would use it as a climbing frame. What i need is a very large kick stool (you know the type you get in libraries), so I could whizz round the kitchen but always have it close at hand to sit down when I needed to. And for the record, I never iron, a pointless task if ever there was one.
So, there you go. If you’ve got arthritis some of these ideas may (or may not) help you. A good source of information is heelspurs.com, they have active message boards where you can get tips from other people with foot pain and an “Ask the Dr” section where you can post questions to a US-based podiatrist and orthotist, not everything suggested on the site is sensible. Some of the suggestions on diet or infrared lights has little in the way of scientific evidence, but like the rest of the internet, you need to use your common sense. It’s also good to talk to other people who understand, I like the Arthritis Care forums (UK) and the National Psoriasis Forums, (US) a little sympathy can go a long way If you’ve got any tips or suggestions for coping with sore feet, I’d love to hear them, please feel free to leave a comment below.
Psoriatic Arthritis – Things to do when your hands ache.
This post is for my own benefit. I’m in remission just now and it’s easy to think straight, but my arthritis will flare up again. I know if I hit a bad flare its very difficult to know what to do for the best, so at least if I have some ideas written down I’ve something to try when the pain gets too much and maybe it will help someone else.
In psoriatic arthritis entire fingers swell up at one time, so called, sausage fingers. One finger can hurt like h*** but the one next to it can be totally normal. When a finger is normal this is called “sparing” presumably because it’s spared the disease. Rheumatoid arthritis is different and the joints all the way across the hand tend to hurt, e.g. all the knuckles and you tend not to get sparing. Either way, sore hands make your life miserable very quickly.
Things I’ve tried
1 Painkillers and anti-inflammatories. These only work if you take them (!).
Paracetemol is a good drug, most people think it is too mild and not strong enough to deal with their pain. That can be true, but don’t knock it till you’ve tried it, properly. Bandolier has some good articles on paracetemol and arthritis, that show it doesn’t help most people but it can be useful in combination with other drugs (not least because you can take it on an empty stomach, i.e. first thing in the morning before you get out of bed). If your doctor agrees you can take paracetemol, then two hours later take an NSAID (e.g. diclofenac) and 2 hours after the NSAID take take another paracetemol (i.e. so there is 4 hours between paracetemols but only 2 hours between drugs). There isn’t a lot of evidence for this but there has been some research. Of course you shouldn’t combine 2 NSAID drugs e.g. dicofenac and ibuprofen, see this BUPA factsheet for more info.
2 Heat Helps
Heat helps, but it isn’t really practical to go about your day with a hot water bottle strapped to your hand. I like my microwave hottie, it’s great for sore backs and hips, but only really good for a sore hand if you are sitting at the computer. On the subject of heat, I find wrist warmers really help, if my fingers are swollen gloves just irritate them, but as these have one large hole for your fingers they are much more comfortable if your joints are flaring. You can also get them in funky colours and can use them to hide the more medical looking NHS splints. And no, I’m not a skier and never have been, I can’t think of anything worse!
3 Computer Keyboards and Mice
I work, I use a computer, most people do. At the moment I use a logitech wave keyboard and mouse. It’s fairly arthritis friendly, they keys certainly have a nice “action” when pressed and unlike other logitech mice, it doesn’t have an annoying click on the click wheel. If my hands are really sore, I sometimes find it easier to use a graphics tablet instead of the mouse, I have a bamboo one. It takes a bit of getting used to. I also use more keyboard shortcuts, as I find constantly moving my hand between the keyboard and the mosue can be very painful. A bookstand is also useful, I like this soft squishy, book bean bag, called a bookseat, because it’s good for reading in bed as well as for working at your desk.
4 Taking a break/Keeping moving
Not staying in one position too long helps, which is easier said than done if you’ve got a lot of work to do. I picked up this tip from the Living Well with Pain and Illness book, where it was suggested you use a vibrating watch/meditation timer to remind you to stop and have a break. I find stopping easy, but starting again is a problem! Anyway, the thing that works for me is something called the “Gymboss”. No I haven’t been inside a gym for years, but it is a vibrating timer, its much cheaper (smaller and easier to use) than a meditation timer and you can set different time intervals. So when I’m working on the computer, i set it for 30 minutes and then it vibrates, I take a break for 5 mins and then it vibrates and reminds me to start working again.
5 Wrist Splints
I don’t use wrist splints all the time, but I find if I put them on, I can get a few more miles out of my hands if my fingers/wrists are especially bad. During the day I like WristEasy, as they are light and don’t look too “NHS”. It’s getting harder and harder to find different sizes of these, so I fear they have stopped manufacturing them. I hope my pair last a long time. I also have a night splint for when the pain is really bad and I can’t even bear to have the duvet touching my hand.
6 Relaxation/Meditation/Visualisation CDs
I have a few of these, some have exercises specifically for your hands and arms, I think I’ll write a separate post on them.
Things I haven’t tried yet but would consider if I had a bad flare.
1 A TENS machine (perhaps with a TENS glove?) Llyods Pharmacy have some reasonably priced TENS machines.
2 A paraffin wax bath (a poor mans wax bath, washing the dishes in hot water!)
3 Arthritis gloves. Are these a gimmick? I’m not sure I haven’t tried them, that’s not to say I never will…
So, there you go. If you’ve got arthritis some of these ideas may (or may not) help you. Its also good to talk to other people who understand, I like the Arthritis Care forums (UK) and the National Psoriasis Forums, (US) a little sympathy can go a long way If you’ve got any tips or suggestions for coping with sore hands, I’d love to hear them, please feel free to leave a comment below.
Only 40 % of people with any type of arthritis are in work
Benefits Now Blog - http://www.benefitsnow.co.uk/blog/
the National Equality Panel published a report for the Government Equalities Office on the distribution of income in the UK. Most of the national media have focused on the fact that the gap between the richest and poorest has widened in the last thirty years. Also reported was that women and people from ethnic minorities continue to experience pay discrimination in the workplace. What hasn’t been reported is the fact that the Panel also looked at the position of people with disabilities and found that having a disability always entailed a significant drop in income and that disabled people who declare their disability are much less likely to find work.
only 40% of people with any type of arthritis are in work;
That is a pretty depressing statistic… I should read the original report, see what the data is based on. I suppose a lot of older people have osteoarthritis and are retired, so that might skew the figures and make them look worse than they are?
Why singing helps
I wondered if there were others in that cathedral with rheumatoid arthritis. If there were people there with cancer, with MS, recovering from surgery, grieving loss. How many of us were in pain? But our harmonies lifted above all of that; they rose, with the great ringing of the organ, into the rafters and into the night. Beyond all of us.
http://pensandneedlesblog.blogspot.com/2009/11/singing-beyond-our-bodies.html
I’ve sung in choirs for years, although I don’t have either the time/energy right now. When I sang I never really thought about others, I never thought if other people were in pain (or not). I know I feel less pain when I sing, probably because I’m concentrating on something else but concerts and rehearsals do involve a lot of standing (usually in cold, draughty buildings).
I love to sing because it is such a physical act; but I also love to sing because the music I produce is incorporeal. It thrusts out and away from these sore, stiff bones, this heart that doesn’t know quite what to do with itself.
Music heals. I guess. If not physically then mentally, it gives you a break. Something else to concentrate on. Hopefully I’ll be able to do some singing this Christmas. Is singing worship? For me personally? It depends. Occasionally it is, usually it isn’t. It’s just something I enjoy doing.
Twelve Quakers and Faith
I am currently reading “Twelve Quakers and Faith”. I like it and want to read more in the series.
Apparently it is Pamphlet 8, makes it sound like some arcane government document from the 1950′s. Pamphlet is good, pamphlet means short, it is only 36 pages long. This means it was cheap (£2.50 plus £1 postatage from the Quaker bookshop) and it is easy to read if you have kids running around.
Having said it is short and easy to read is perhaps doing it a disservice. Many of the ideas take time to digest and I rather think the point is to read and consider each point of view rather than race to the end like an express train.
I read it in a oner and raced to the end like an express train. Oh well.
When reading about other peoples personal experiences, I find I am always comparing them to mine, do I agree with their views? Is their world viewpoint the same as mine? Do they use language I like or does it turn me off? I’m not necessarily sure this is a good thing, but it is what I do.
Personally I find too much mention of God, Jesus and long quotes from the bible just don’t do it for me. I turn off. I feel like I am being preached at.
So as always I found myself comparing my views to those in the book and unusually, I found myself agreeing with “1″.
“so much of my belief was cultural as much as theological; implicit in it was church architecture, music and literature.”
This is true for me, I was brought up in the Church of Scotland. I love church music, the architecture. When I first heard of Quakers, I dismissed them out of hand as there was “no music”.
I now realise that I can enjoy religious music in all it’s forms but this does not have to be an integral part of meeting for worship. Anyway the whole Quaker idea is that your whole life speaks, not just the bit you do in church, so I can still enjoy religious music. All this is a wordy way of saying is that my early belief was as much cultural as it was religious.
It was a great relief to become a Quaker and not have to say things like “he descended into hell…”
I agree. How can you recite the Apostles Creed if you don’t believe in it? Surely that is the worst form of hypocrisy? I have never taken Communion as I do not believe I am eating the body of Christ. I also fail to see how doing so would make me a better person.
I was a regular attender at a meeting in England. One week, a lady explained how she had been at a Church of England church. They were having communion and she had not taken part. She had been encouraged to go forward to the altar for a blessing. Again she had refused. I felt such relief when I heard this. Here was a woman who I admired and seemed to share my same uneasiness at taking part in communion. Maybe my views aren’t so heretical after all.
In meeting, not all vocal ministry is directed specifically at me. So when someone speaks and it doesn’t hold any meaning for me, I remember the relief I felt when, one sunday the ministry did speak to me and I hope that someone else in the meeting is gaining the same benefit from the ministry that had no meaning for me. For me, that is the essence of how a Quaker meeting works.
Anyway, I have enjoyed reading this booklet and I will probably consider some of the other views in more depth. After all, how else do you learn?
More books I’d like to read
Science not Art
http://www.gulbenkian.org.uk/publications/arts/science-not-art
signs and humors – The poetry of medicine
http://www.gulbenkian.org.uk/publications/arts/signs-and-humours
More of the twelve quakers series
http://www.quakerquest.org/index.php?option=com_content&task=view&id=19&Itemid=29
Poem …life could get this small…
This poem haunts me, maybe haunt is not the right word, one phrase in particular sticks in my mind;
I never thought that life could get this small
It is from a poem called “Chemotherapy” by Julia Darling. It ends saying
I’m not unhappy. I have learnt to drift
and sip. The smallest things are gifts.
You can read more about her work in this article in the Guardian.
http://www.guardian.co.uk/books/2004/aug/05/health.poetry
I like the description
My joints are like rusty cranes
My spine is frozen
Prayer…
This random person walking the other direction said to me ‘I’ll pray for the Lord to heal you!’
I said, “Well, He made my genetic disorder, so I think I’m stuck this way.”
http://www.rheumatoidarthritisguy.com/2009/05/on-becoming-visible/
LOL! This was in the comments section and really made me laugh! I think that’s why I like quakers, you can be a quaker without having to go round and “inflict” your faith on all and sundry. I’d be so insulted if someone called out to me in the street. Evangelicalism is not for me.
Walking sticks, canes etc
So back to the present moment of today, I once again have to get used to the laser vision stares that come my way as I walk down the street. A seemingly healthy guy with a cane just seems to draw a lot of eyes. For some reason, strangers always feel the need to ask me what sport I was playing when I got my “injury”. Uh, I got into a cage match with my immune system, and my immune system seems to have won. I am tired of pretending to be a soccer player, but they always seem to like that response and leave happy. (I used to answer by saying that I had rheumatoid arthritis, but that never seemed to work — too many blank stares, and too many comments on my age.) I was once even asked if I had gotten hurt while mountain climbing. How adventurous of me, no?
RA Guy – On Becoming Visible
Okay, I know I have “disclosure issues”. i.e. I don’t like telling people I have arthritis because, quite frankly it’s none of their business. I don’t want their sympathy and I don’t want their crappy fish oil/no tomato/no potato cures.
So I can really relate to this post “on becoming visible”, I have used a walking stick in the past, I have a couple. I started of with a nicely carved solid wood one. It really helped, I was in a lot less pain, for about a week. Trouble was, I was putting so much weight through the stick that my hand shoulder etc started to hurt and I quickly realised that I would rather have sore feet than a sore hand. What I couldn’t cope with were the “laser vision stares”. I would rather be in pain. Vain but true.
A few years on I got a different stick, more of a hiking pole, but with a nice comfy handle. It also had a bit of a spring in it so it was easeir on my hand/arm. It was still a stick. Young people, who look fit and healthy with a cane attract stares. Everyone is trying to work out “what is wrong with you”, if you look to be walking okay (maybe becuase you’ve just left the house but you know you’ve got an hours shopping to do). people assume you are “faking it” or “attention seeking”.
The other thing that nobody gets is that with arthritis you can be up and down faster than a bloody yo-yo. I can need a stick one week and not the next. This does no mean I am “getting better”. Using a stick does not mean I am “getting worse”. No one understands flares until they live with them. For me, it’s easier to put up with the pain than face other peoples judgment. For now anyway, I don’t know what I’ll do when I can’t lean on the pushchair!!
Parenting and arthritis
This was in a post on the excellent RA guys website:
They don’t want their momma to feel pain and when I do, they feel insecure and uncertain about how to rescue me.
This was in the comments section, it made me think
It is going on two years for me with my journey with RA and Fibromyalgia. My older son is nine and a half and the baby turns a year old next month. The hardest part for me is dealing with the fact that the baby will never have the same mother that my nine year old had.
This also made me wonder whether I am strong enough to conquer anything and everything. Am I, as a parent, required to be unbreakable or always be confident about myself, about my parenting skills and about preparing my children for the world? I guess the answer to that is that we are all learning as we go.
I can understand that kids find uncertainty frightening so I can understand hiding your arthritis from them as much as possible. I can also understand the need to be open and honest with your kids without scaring them. A difficult balancing act.
As this post points out, it’s not the pain itself that is frightening, it’s not knowing what to do that is scary. So if the pain is bad giving the kids a task like getting a wheat pack or a glass of water (something/anything) is better and less frightening for them, because then they have something useful to do.
How much do you want to let your kids know? How much are your kids going to tell their friends/friends parents/teachers? How much can you ask of your kids? How many chores are too many? (or not enough!).
Silver Ring Splints
http://www.silverringsplint.com/index.html
I hadn’t heard of these before. The joints on my 5th fingers are starting to “fall in”, I notice it most when I play the flute (I mean, apart from typing you don’t really use your pinkies that much…). Perhaps something like that would stop them caving in, at least long enough to get through a piece?
http://www.rheumatoid.org.uk/article.php?article_id=81
http://www.sciencedaily.com/releases/2008/06/080603174302.htm
Academic giving to charity
http://news.bbc.co.uk/1/hi/uk/8360098.stm
Very generous! This university of Oxford scholar plans to give to charity anything he earns over £20,000. A very noble idea.
When I read it I just kept thinking, what happens when he has kids? Admittedly, he is a man, so he is unlikely to give up work to look after his children (I mean, I WISH I earned £20,000 a year!). But kids like things like horseriding lessons and music lessons and school trips. You can do all these things on £20, 000 but I’m not sure you can do that AND live in Oxford!!
Good luck to him though.
Science and Faith
http://epi101.blogspot.com/2009/10/dialog-on-faith-reason-ryan.html
Nicely written blog post discussing science and faith
if God had granted us abundant evidence for his existence, we wouldn’t need faith.
13 things you don’t say to someone with chronic pain…
http://www.drluoma.com/actresources.html
Some Mp3′s and worksheets for downloading
http://versilleus.blogspot.com/2009/09/13-things-you-dont-say-to-someone-with.html
One of my personal favourites from one of their line is the “13 Things You Don’t Say to Someone with Chronic Pain” quote.
1. You don’t look sick.
2. Maybe if you just got out more.
3. You can learn to live with it.
4. You just have to tough it out.
5. It’s all in your head.
6. You’re just having a bad day.
7. This will pass.
8. Just get more exercise.
9. It can’t be that bad.
10. It must be neat not to work.
11. Just be more positive.
12. It could be worse.
13. There’s people worse off than you .
Chronic Pain
I found this article interesting
Chronic pain comes with a whole lot of misinformation that most other illnesses don’t have. Unlike diabetes or emphysema, people with chronic pain have usually spent a long time searching for a diagnosis, and have usually seen multiple health providers all with various names for what the person has, and promising some sort of cure. Even for something as clear-cut as ankylosing spondylitis, it takes around 4 years from initial symptoms to eventual diagnosis and management. This means that most people with chronic pain will have had a long time with hopes raised then dashed with each ‘cure’, lots of time feeling unrecognised and often mislabelled as ‘noncopers’ or perhaps even ‘malingerers’, and plenty of apprehension that every time they move they may be ‘causing more damage’.
As a result of both of these, people with chronic pain seek many ways to self medicate. So they may smoke cigarettes, drink alcohol, take medications (either prescribed or over-the-counter), and spend loads of money on ineffective gadgets like magnetic bracelets and massaging cushions and ‘energy treatments’. While the latter may not harm the person, they cost a lot both financially and emotionally, and the former have serious health effects.
Managing chronic pain means changing beliefs and behaviours across every part of life. Unlike taking medications, or changing diet, chronic pain management involves self regulating thoughts, changing expectations, adjusting goals, modifying activity patterns, expressing to others why things are being done differently. Constantly reviewing how much energy is available against what needs to be done, because ‘overdoing it’ has such a high physical and emotional cost.
Relapse is normal, flare-ups inevitable and both can happen for no apparent reason. And both of these events can start the whole process of investigation, diagnosis, treatment and more treatment. Or cause the person to doubt that they have the determination to carry on, or that what they’re doing is the ‘right thing to do’.
I wish this bit about relapse wasn’t true….
It risks labelling the person as being the problem rather than the pain because ‘they didn’t get better’, or ‘they’re never satisfied’.
So where does all this leave me?
I think this post makes me thing about the wider issues of pain managment, the fact there is no one size fits all. No magic system of goals or targets or thinking that will “cure” me. Techniques that work at one time may not work at another.
I also realise that it is up to me to find a strategy that works in my life, but if I can do this using an “evidence” based approach and learn from others this has to be a good thing. But what strategy? Do I have one? How do I develop one? What things are currently holding me back? Should I be doing more? or less?
This idea seems workable:
Recently I’ve used a ‘Plan to do’ and ‘Did do’ diary where people plan their day’s activities, then record what they actually did. This provides immediate feedback on progress – and successfully achieving what was planned, no matter how low the level of activity, provides a sense of accomplishment and becomes reinforcing.
Dobkin’s answer is that these studies remind us of ‘the two faces of medicine’ – curing and healing. Bone loss, joint damage and C-reactive protein reflect what the medics seek to ‘cure’, while effective coping, improvements in disability and mood, anxiety and social support are all ‘in the domain of healing’. She points out that the research process requires these to be pulled apart into small pieces that we can define and measure and investigate, but in fact they all belong to the whole person who looks for treatment and to be understood.
http://healthskills.wordpress.com/2009/10/20/that-old-mind-body-thing-again/
I hate that term “healing”, it’s so new agey and banded about all the time by snake oil sales men trying to “balance my energy” / “align my charkas”/ and who assure me I’ll live forever if only I eat a “vegan, organic, taste free diet”. I don’t think that is what is meant in this context but the term “healing” is so nebulous can it really be pinned down?
Hip pain – bursitis
Aha, this is what my sore hip is. I didn’t quite catch the name when I was at the GP, “trochanteric bursitis”, sounds like a new fangled gearbox!
When patients refer to hip pain, sometimes they are experiencing trochanteric bursitis and care must be taken during history taking and physical examination to elicit the exact source of symptoms. (Hip joint pain is usually experienced in the groin, sometimes radiating towards the knee, and less frequently in the buttock. Patients often point to the upper buttock area or lateral hip when describing ‘hip’ pain. This often suggests that the pain originates in the low back or trochanteric bursa.)
Rheumatoid Arthritis – Articular DiseaseIllness – Art of Living Havi Carel
I’d like to read this book, maybe it’s quakerly maybe it should be in the arthritis category. I don’t know. I haven’t read much philosphy before and this looks like a reasonable place to start.
Illness – Art of Living Havi Carel
can I be ill and happy? Here we learn of the complexities of illness, and the nature of chronic illness, and how this shifts the relationship between health and illness. I found that what was particularly instructive about Carel’s arguments and insights here, was that in insisting that illness and health are not binary opposites, and thereby disrupting a powerful dichotomy, she demonstrates to us that there is a kind of permeation of health and illness with each other, and that all of our bodies are permeated with bits of illness and bits of health in a way that doesn’t allow them to be set up as opposites of each other;
http://metapsychology.mentalhelp.net/poc/view_doc.php?type=book&id=5133&cn=394
Your tendons hurt before your joints do…
Lower limb enthesopathy in patients with psoriasis without clinical signs of arthropathy: a hospital-based case-control study.
Gisondi P, Tinazzi I, El-Dalati G, Gallo M, Biasi D, Barbara LM, Girolomoni G. Department of Biomedical and Surgical Science, Section of Dermatology and Venereology, University of Verona, Piazzale A. Stefani 1, I-37126 Verona, Italy.
paolo.gisondi@univr.it
Comment in: * Ann Rheum Dis. 2008 Jan;67(1):1-4.
http://ard.bmj.com/cgi/content/full/67/1/26
BACKGROUND: Psoriasis is associated with a form of spondyloarthropathy in 10-30% of cases. A major feature of psoriatic arthritis is enthesitis. In some patients with psoriasis the presence of enthesitis could be underdiagnosed.
OBJECTIVE: To investigate the presence of lower limbs entheseal abnormalities in patients with chronic plaque psoriasis without signs and symptoms of psoriatic arthritis. METHODS: Thirty patients with psoriasis and 30 controls underwent ultrasonographic evaluation of Achilles, quadriceps, patellar entheses and plantar aponeurosis. Ultrasonographic findings were scored according to the Glasgow Ultrasound Enthesitis Scoring System (GUESS).
RESULTS: Mean GUESS score was significantly higher in patients with psoriasis as compared with controls: 7.9 (0.6) vs 2.9 (0.3); p<0.0001. In particular, the thickness of all tendons examined was significant higher in cases than in controls (p<0.0001), as well as the number of enthesophytes in all sites examined. In both cases and controls, the GUESS score was directly correlated with age (r = 0.22; p = 0.008), body mass index (r = 0.23, p = 0.0067) and waist circumference (r = 0.17; p = 0.02). In contrast, the GUESS score was not correlated with the duration and severity of psoriasis according to the Psoriasis Area and Severity Index (r = 0.03; p = 0.8) and body surface area involvement (r = 0.07; p = 0.6).
CONCLUSIONS: Entheseal abnormalities can be documented by ultrasonography in clinically asymptomatic patients with psoriasis. These findings could be related to a subclinical entheseal psoriatic inflammation. We suggest close follow-up of patients with psoriasis with entheseal abnormalities for early diagnosis of psoriatic arthritis.
All of us who deal with the fear that naturally arises when our bodies just don’t seem to work…and who continue to look for ways in which our minds and souls can pick up the slack.
http://www.rheumatoidarthritisguy.com/2009/11/rheumatoid-arthritis-guy-returns/
Research Round Up
There have been lots of news stories about new treatments for arthritis this week so I thought I’d try and summarise some of the research here.
Apremilast, I haven’t heard of it, but apparently it has been tried on 204 people with psoriatic arthritis and the results were reported at the American College of Rheumatology.
http://www.arc.org.uk/news/article/19419802
You can read the abstract here:
http://acr.confex.com/acr/2009/webprogram/Paper11462.html
If you read the abstract, you will be pleased to note “there were no deaths” !
This also lead me to a link in Nature Drug Discovery, this graph interested me, it is the number of people with mild, moderate and severe psoriasis and the treatments they receive.
http://www.nature.com/nrd/journal/v8/n10/full/nrd2996.html
You can download the pdf here:
http://www.nature.com/nrd/journal/v8/n10/pdf/nrd2996.pdf
This is a summary table I’ve drawn up using the information in the article
| How does it work? | Marketing Name | Scientific Name | Company that makes the drug | Get it by… |
| Inhibits TNF alpha | Humira | adalimumab | Abbott | |
| Enbrel | etanercept | Amgen/Wyeth/Takeda | ||
| Remicade | infliximab | Centocor Ortho Biotech/Schering-Plough | IV infusion | |
| Simponi | golimumab | Centecor Ortho Biotech | ||
| Target T cells | Raptiva (Xanelim) | efalizumab | Genentech/Roche/Merck-Serono | |
| Amevive | alefacept | Astellas/Biogen | ||
| IL-12/ IL23 Inhibitor | Stelera | ustekinumab | Centecor Ortho Biotech | |
| PDE4 and other interleukins | apremilast | Celgene | Tablet |
Withdrawn
There are certainly lots of new drugs out there. But and it’s a big but, they all target general pathways that your cells use to signal (communicate) with each other and long term, no one knows what these drugs are going to do to you.
TNF was discovered because it could kill tumour cells, therefore, it’s possible that if you inhibit TNF you increase your risk of cancer. So far, after 6 years of follow up, people taking TNF inhibitors are NOT at an increased risk of cancer.
However, cancer takes YEARS to develop and until we have data looking at 20-30 years we’re not going to know if these drugs do increase your cancer risk. For example, being obese increases your risk of cancer. About 40 % of cancers could be prevented if people maintained a healthy lifestyle. If you are obese in your 20’s and 30’s you are not going to get cancer (due to obesity). If however you are in your 60’s or 70’s you ARE more likely to develop epithelial cancer because you are obese. I think the same will be true for the TNF inhibitors. They won’t give you cancer straight away, but over a lifetime they probably will increase your risk. Whether the risk of developing cancer is worth being able to live your life in minimal pain and with much greater mobility for 20 years is a decision people who need the TNF inhibitors have to make.
The National Psoriasis Foundation in the US, have a good list of new drugs for psoriasis, whether these will be apporved by NICE/SIGN for use in the UK is a different matter entirely…
http://www.psoriasis.org/NetCommunity/Page.aspx?pid=664
There was also some new research out this week describing how fish oils could help arthritis:
http://www.arc.org.uk//news/pressreleases/18445.asp
http://www.wellcome.ac.uk/News/2009/News/WTX057226.htm
http://www.sciencedaily.com/releases/2009/10/091028142227.htm
The science bit….
http://www.nature.com/nature/journal/v461/n7268/full/nature08541.html
N=1 Hip and Stuff
Well, my hip is still bothering me off and on, seems to be worst on a saturday for some reason. The doctor thinks it’s more likely to be the tendon than the joint itself as it “only” hurts when I am trying to get my legs into bed or trying to sit down. I can stand up and walk up and down stairs okay, which means the pain probably isn’t coming from the joint.
I have really limited my walking the past couple of weeks (my husband has very kindly been walking the dog at night) and that has really reduced the pain and the swelling, it’s not really a long term fix though.
The trouble with limiting my walking is I haven’t been to Quaker meeting in months. I could probably manage it if I used a walking stick, but I don’t want to. I’m too vain. I don’t really mind if the people at meeting know I have arthritis, but I have no desire for everyone in my town to know. I can hide it from most people, most of the time and if I’m asked why I’m limping I blame it on a nice non specific “bad back”.
At the moment it’s a bit like Russian roulette, I’m just waiting for another joint to go and hoping its not a “major” one. That’s just the way it is.
I’m still hoping for a magic pill to take the fatigue away, its hard not to feel like life is passing you by. Trouble with all the pills (injections and IV’s) is that they all seem to make you more fatigued, not less. Let me just say, THAT SUCKS.
Rheumatoid Arthritis Cartoon
Great link for describing rheumatoid arthritis in 60 seconds
http://www.rheumatoidarthritisguy.com/60-second-guide-to-ra/
I love the cartoons! They made me smile. I like the speedometer with the “old/young” and the bit about being able to leap buildings in a single bound one day while not being able to get out of bed on another!
Oh Lord! Flare Bingo, now that made me laugh out loud 
http://www.rheumatoidarthritisguy.com/2009/06/b-i-n-g-o/
http://www.rheumatoidarthritisguy.com/2009/10/actress-camryn-manheim-ra/
I liked this blog a lot, I like the graphic design, the superhero wall, the RA10 idea. The design is clean and fresh and modern. Just what you need to stop people thinking of arthritis as an “old persons disease”.
Working with RA
From an blogger – Into the Sea of Dreams
Well, the thing of it is. the RA is going to get worse regardless of whether I work or not. That was proven last year when my RA went bat-shit crazy and I started the methotrexate. This was after nine years of relatively good progress and working part time for three of those years. I would average a a major flare two or three times a year. Flares will happen. I have some control over whether or not I have a flare by exercising, eating well, getting enough rest and dealing with stress. But, flares can happen without warning or reason. Shit happens.
http://fumblingthruchaos.blogspot.com/2009/10/excuse-me-while-i-kiss-sky.html
Placebo Effect in Medicine
I want to be able to find this post again, so I’m posting it here. A long and interesting discussion on accupuncuture, the placebo effect and modern medicine.
http://www.sciencebasedmedicine.org/?p=1518
# # MedsVsTherapyon 17 Sep 2009 at 9:37 am ”Patients want to be listened too.”– Sure. I agree. But let’s be honest, and not fool ourselves and anybody else. In psychotherapy, we would technically, officially call this “supportive therapy,” or informally, amongst colleagues, hire-a-friend.” Empiricism: if it works, and the benefits are not outweighed by harms, and if pt. is informed, then go ahead: let’s listen to patients as an intervention. Studies have been done on this for pts. with “medically unexplained symptoms,” with high utilizers of medical care, etc. In practice, it really doesn’t go well to say: “hey this is all in your head – I am gonna refer you to a counselor.” But you can do this: “hey – along with medical treatment for [fill in the blank with the diagnosis du jour, recognized by its characteristic symptoms of: low energy, fatigue, difficulty concentrating, diffuse aches and pains, dizziness, etc.] – we know that lifestyle has a great impact on how a disease impacts your life – We need a holistic interevntion – I want to refer you to our health psychologist [or whomever] who trains people in how to manage chronic illness — stress management, wellness things like exercise, diet, and sleep, and things like that – I am going to refer you, and follow up to see how this works for you.” Figure out someone somewhere to do this for you. Figure out how to bill for it. Follow an evidence-based chronic illness management program such as Kate Lorig’s, and make sure to let the counselor know that they have liberty to add a healthy dose of “listening” PRN. Along with the empirical evidence, I have done the counseling part myself. One pt had terrible arthritis – you could see the swollen knuckles. Once we started talking, she skipped the pain mgmt agenda I had prepared, and she just went on to talk about: alcoholic boyfriend, lazy irresponsible young adult son, money management problems, etc. Across a couple months, her pain from arthritis disappeared from her agenda — use of pain meds decreased, sleep interference from pain decreased, etc., — pain relief disappeared from her list of “what the patient wants;” she wanted someone to listen, plus she needed to learn basic assertiveness and a few psycho-ed type skills like that. So, if what the pt wants is someone to listen — in a certain salubrious way – let’s do it; and let’s not carry on the charade of ineffective interventions (acupuncture, chakra re-alignment, magnetic therapy, tuning fork therapy, etc.).
arthriticquaker
arthriticquakerBooks I like
