I had first fortnightly MTX-related bloodiest at 9.50am today. Woke up every 2 hours at least last night with leg cramps (get 'em constantly - what is that about?) & so overslept, it was 9.31 when I looked at the time! Miraculously got my dishevelled, foul-tempered self to doctors just one minute late!
The annoying thing on the wall that you have to watch for your turn said that the Practice Nurse was running late. She emerged from her room a couple of times, obviously in pain herself and barely able to walk. I looked around the waiting room: predominantly female clientele, mostly with sticks, some with one hand closed and held in a protective way, some men: ditto. I reckoned it had to be DMARD blood test day and here they were: a whole load of local folk with Rheumatoid Arthritis or similar. A few months ago I wouldn't have seen the signs, they wouldn't have meant anything to me. Eventually the Practice Nurse appeared with her bag & coat and left the building. Does she have RA? I was beginning to wonder if everybody does.
In town it's even more striking - the high percentage of people with sticks or a limp or that closed hand maybe grimacing briefly with pain before putting the public face back on. I never noticed them before. And it's not because disability or impairment are alien to me - my Mum had multiple sclerosis - I thought I was 'aware'.
A link I ended up on via the RA Warrior site claimed that 1 in a 100 people worldwide have Rheumatoid Arthritis! That's huge - why isn't there more noise about it? I must have met people with the disease, worked with them maybe but I can't remember one person telling me that they had it.
When I get my head around my own disease (okay, that's a bit ambitious ... 'when I get a bit more used to this / get a firm diagnosis') I want to do something, but I don't know what yet.
(I eventually did get my blood test done by another nurse who appeared unfashionably healthy.)
Feather you put into words beautifully many of the things I'm feeling now too. Your experience is different to mine because I live in a small community and I only know of about 3 people living in my small home town who have RA. I too am agog that this disease gets so little attention compared to many others. I'm not surprised MS gets quite a high profile here because we have the highest stats in the world and really it should get even more attention than it does I feel. But for a condition that involves a chemotherapy drug being administered, sometimes over many years if a person can tolerate it (?!) - it's astonishing how few actually know what the implications of a diagnosis of RA can do to a person.
Our local BBC radio station has recently covered cancer in most of it's guises - which affects less of the population per head than heart disease in terms of fatalities - and there are three cancer charities based up here in one small group of islands with a population of only about 20,000. It also covered a Falls Awareness week and Crohn's has been discussed several times but I've never heard mention of RA or Lupas or inflammatory arthritis in general and I think these diseases, in their most aggressive forms, can be just as serious if not more so. After all some forms of cancer are very curable and many go into remission whereas RA is still incurable. Many forms of cancer are relatively painless whereas RA is never painless. So why is it that if we say we have RA to close friends and family or to work colleagues or aquaintances we are invariably met by a blank expression? I'll join you on campaigning when you're ready - if you'll have me?! Tilda xx
PS you never said if you got your blood test - did the practice nurse with RA ever return? I do hope so. I usually get them done by my GP now because it's the only chance I get to ask questions and be monitored effectively but then I have no rheumy nurse.
Ps sorry I only just read the brackets re the unfashionably healthy nurse. Mine is a friend who has had breast cancer and has a mother-in-law with very aggressive RA so she knows it's much of a fun thing to have at least!
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Hi Tilda, hope you are feeling much better.
You know I think that RA & its chums PA & this that and the other A need much more exposure in all their complexity i.e. how unpredictable and variable they can be. That way maybe people would celebrate our good hours / days / weeks / months with us.... instead of seeing them as evidence that we were faking it all in the first place!
I now have secondary osteoarthritis in my left knee so the inflammatory arthritis has done the dirty on me already and I've got a permanent bad limp, except that it isn't, not quite. Sometimes, inexplicably, I can walk normally with ease for about 10 minutes & I never, ever want to feel the need to explain that, I just want to enjoy it.
Lets keep thinking about ways to raise public awareness, share some ideas, perhaps ... could maybe join existing campaign if there's anything interesting out there ...
Christina x
I think we are all pretty unaware of RA until we get it. Well I was, anyway.
It must be partly to do with the fact that most people will get "arthritis" as they get older, so everyone thinks they know all about it.
And we RA warriors (such a good term of endearment) tend to be greeted with the usual... Oh, I have that in my hip/knee/finger/...
I got a different reaction this morning from an elderly lady who was showing me her gnarled fingers (OA). I said, oh poor you. I have arthritis too. She said Osteo? I said no, Rheumatoid.
Well she looked shocked. And really sympathised.
The reason she was shocked was that she is a retired nurse who started nursing in the 1950s and saw the people who, back then, were treated with high dose steroids and total bed rest. She had some really interesting (but tragic) stories to tell about how it was in the old days.
Some people were rested with their knees bent over pillows, and they set that way! So they had to be manipulated in surgery to straighten them out.
An RA diagnosis was like the beginning of the end back then.
So I am now counting my blessings, thanking the scientists for all my DMARDS. Thanking the researchers who are making biological weapons of RA destruction. It quite cheered me up to have RA in the 21st century... I think... well you know what I mean!
Phoebe, how things change, dread to thing what we would be like if we went through it then. A lot less mobile and probally in a wheelchair too. I thank the drs for at least they are doing their best to get each of us under some sort of control.
Sylvi.xx
• in reply to
Hi Phoebe, yes when I was trying to get my head around being ill all I could recall was a very outdated, sad & scary story which obviously did not help my state of mind! And now I think myself 'lucky' too, sometimes - I guess luck comes in many forms!
I had a neighbour up here who had come up from
Lancashire with her hubby. She had RA and was really crippled by it - eventually it went to her lungs and she died about 3 years ago. So I suppose I knew how serious it could be - and recall my GP saying about my knees when I first presented with them about 15 months ago "they look normal so it probably isn't rheumatoid arthritis but we had better take some blood tests to see" and I asked him if that was the bad one and he nodded and said "we all get osteoarthritis to a greater or lesser extent as we get older" so I knew by that it was the one my old neighbour had suffered from and knew to dread it!
I think anyone who has had their lives touched by one of the inflammatory arthritis's knows that they are bad news and most people only learn when it affects their own lives in some way. What I am struggling with is that although I know these drugs have made a huge difference to RA sufferers I also feel that the drugs are adversely affecting my life to a large extent just now and that's harder to explain to people somehow? Either we get the "I wouldn't take them!" treatment or people tell you how lucky you are to have this medication available - or they compare it to other stuff like statins or insulin - which scares me almost as much!
It feels like a slippery slope. But don't mind me I'm just not up to much currently despite the magnificent weather here today. The videos that Emmaf put on her post were brilliant at showing how far rheumatology has advanced in recent years so I'm holding on to that tightly! nras.healthunlocked.com/que...
People *in general* don't seem to appreciate that systemic arthritis (the kind that's autoimmune) can affect any human being at any time from birth onwards. Since, on average, only 1 person in 100 actually gets this kind of arthritis, based on a disease process (eg sero-positive Rheumatoid Arthritis, Psoraitic Arthritis, Ankylosing Spondylitis et al.) its not in common experience. I was the same, before
Whereas, at some point, unless they pass away first, almost all people above forty experience some form of mechanical erosion in one joint or other somewhere, eventually, or they know a relative/friend that suffers from it. That's not the result of a disease, its mechanical wear-and-tear on any particular joint, and its widely familiar to most people, as they know somebody that has had that problem. That's Osteoarthritis of the <whatever>.
So, just like me, a lot of you folks know all too much about the first sort, but joe public simply hasn't met it unless he's in the 1%, or knows someone who is, personally and well.
Systemic autoimmune arthritis(es) are chronic incurable and degenerative in nature. Their common feature is simply that the immune system is treating the synovial tissue in the body as a pathogen, to be located, killed and expelled by the body on a cell-by-cell basis until all that type of tissue is no longer present.
In an untreated sufferer, the ongoing process causes exhaustion that rest does not relieve properly, inflammation, pain, and/or eventual loss of function of all major joints, and some places where synovial tissues are present outside major joints, like near the ribs, the membrane around the heart, and the lungs too. Agonising, Physically Crippling and sometimes lethal outright.
Luckily for us sufferers, with modern treatment, not everyone in the 1% has that to look forward to in their lifetime. But to one degree or another, we'll experience some or all of those nasty effects, because the cause is the same.
The medications used to slow down the rot... are nasty themselves, with (sometimes) unpleasant or even dangerous side effects.
So the balance has to be struck between creating and or maintaining a person's capacity to move/work/enjoy life, with these serious medication effects. Each person's severity of the disease, and ability to cope with the side effects of the medicine(s) they take, are very different. Its possible to treat some folks with minimal therapy to control RA and they can lead relatively full lives. At the other end of the scale, it can be an agonised death-march that never quite finishes a person off. They just wish to hell it had.
But the actual number of cases getting *there* grows less all the time, so fingers crossed, if you can
Being diagnosed with RA has changed my perspective too, and i now feel horrified that I was lighthearted with a friend with gout. And yes it would be great if RA was better known, but the conclusion that I've come to is there are loads and loads of unpleasant conditions out there, all of which need support, sympathy, campaigning, research and so on. I have friends with some of them, such as Parkinson's, various cancers and so on. and no doubt like RA (in my pre-diagnosis period) there are others I've never heard of. All truly awful. But which is worse, more needy, more deserving? I haven't a clue. So I also think it's important to make people understand more about how invisible many diseases are, and that people need to be more sensitive and shouldn't make assumptions about disability. Like Little-EM's story about being harassed for using a blue badge space. i sometimes think that we're getting more intolerant of more things - for example and it would be great if you could shuffle along at your own pace and feel confident that people around you would be accepting of it, instead of tut tutting behind you cos you're holding them up.
Wow! You folks have really covered this entire discussion and all corners briliantly! As I am reading all these testimonials, I am thinking, "how too bad some of the research people won't be reading them, to maybe be aware of the endpoint of their oservations!"
Great discussion! This site is outstanding! Loret xx
I agree with Loret. I've only just caught up with this. Great blog and responses. Fantastic reading. Judy x
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