Last year I started taking methotrexate. The first 4 months were rough. The first 2 months were really rough. On the plus side after about 6 months I started noticing some changes, and gradually, bit by bit things have started getting better.
1 I have more energy, I no longer feel like I have to lie down at 4pm because I physically can’t keep going.
2 I can think better – thinking is easier, faster less like dragging myself through fog.
3 I have more movement in my joints, I can…
- turn over in bed, automatically and without thinking about it
- move my fingers, type and play the flute (not brilliantly but a damn site better than I was)
- shampoo my hair and wring the water out of it
- wash my hands without pain
- stand for long enough to cook tea and wash the dishes!
- lift a kettle full of boiling water
- lift something in and out of the oven, without a meticulous plan
- pick stuff off the floor
- get down to the floor and back up again
- stand for long enough to clean my teeth
- walk on uneven ground or ice and correct my balance
- run a few steps (if I need to! useful for catching falling children…)
- get out of bed in the morning and stand up straight
4 Doing my job no longer feels like a herculean effort demanding every last ounce of my strength.
So the down sides.
1 I felt exhausted, wiped out, and breathless for months, although that has passed
2 Nausea, I take it weekly, I still feel sick for 2-3 days
3 I don’t sleep well the night I take it
4 I feel wiped out 2-3 days after taking it
5 The regular blood tests make me feel like a “sick person”
6 My blood counts vary, I’m worried I’ll have to stop taking it.
7 Remembering to refill the prescription is a pain (and the “high risk” sticker never makes me feel good).
8 Every time I get any sort of infection I worry I won’t be able to fight it off.
9 Every time my kids/family/friends get sick I worry I’ll get what they’ve got .
10 What (when?) will it stop working for me?
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…
Here are a few links I want to remember
An online convertor
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.
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)
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!
Books I’ve got some ideas from but wouldn’t necessarily read again
On my “to read” list (if every day was 48 hours long and I had time to sit and read!)
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!)
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.
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
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.
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.
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
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.
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
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.
1 A TENS machine (perhaps with a TENS sock?) Llyods Pharmacy have some reasonably priced TENS machines.
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.