Today i had a bad day. Had to rush my hubby to hospital in pain. It turned out he had a flare of his hiatus hernia. It was a worrying time for me,but happily he is ok. he has to go to see his dr to get refered for a camera put down to see where the problem lay. I have been suffering as well.
Anyway i have the news on and they think that there will soon be a genetic test which will tell who is likely to get various types of cancer. Now this i don't mind what is getting my goat up is; why isn't there the same amount of money being put into ra and diseases associated with it. Lets face it if you get cancer you can be cured in most cases and they get so much publicity for it. Now don't get me wrong i know it is a serious disease. I think that when we get ra,it is a lifetime disease and an expensive one as well.There are hardly any appeals for this disease. I know our nras are doing a good job. I just get fed up when the news comes on and there is always something about cancer,never about ra. I think this is a more serious problem.It also costs more in care,drugs and operations as well.
I hope i don't upset anybody over this and there was never any intension to upset.This is just my personal view. Probally because i am waiting to hear if i have some ant-tnf drugs for my ra.I am in chronic pain tonight,so please don't be too hard on me....
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sylvi
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Hi there i can say with out a doubt that i would agree with you Syivi. Poor Summer what she is having to endure just so maybe she can have drugs that would help!!!!!!!!!! what's the point of drugs if you can't have them coz they're to expensive. I think i might be having a rant sorry about that.
I hope your ant-tnf will soon appear take care xx
I completely agree with you about this Sylvi. It annoys me a lot when people say that it's because cancer is more "sexy" than RA/ arthritis. Why are any diseases seen as sexy? Surely people should regard it as a basic human right to have their pain and suffering acknowledged and helped? I am hoping to raise the profile of RA with my MP and MSP with the help of NRAS. I have raised the subject with my local radio station too but don't know how to access people who would be prepared to speak about their expriences with RA - especially younger sufferers.
It's not just RA that is neglected though - it's Lupus, Crohns, MS and many other autoimmune diseases. People just seem to think cancer is the only serious disease around and where I live there are at least 3 cancer charities to a population of 20.000 where the proportion of people suffering from autoimmune diseases is apparently higher than that of the general population elsewhere in the UK. I suppose it's because statistically one in every 3 or 4 people is affected by cancer compared to one in every 100 for RA and far fewer still for Lupus and other equally horrible related diseases. But last night when I was at my exercise class and was invited to do a midnight walk for a local cancer charity I found myself thinking "no I want to walk for people with RA" - especially while I can walk myself. If I lived in the center of things more I would definitely put more energy into RA awareness - not for me so much but for others I've seen suffering on this site. Tilda x
Im off to bed.. yes RA IS THE Cinderella illness and rhuem depts are the ugly sisters,
Sylvi.. thinking of you for hubby and yourself.. xx
I am going to show my ignorance here... my Nan had rheumatoid arthritis and I had no idea what a day in her life felt like. I saw that she had special shoes after her hip replacement as her bone had warn down so badly that the op left her with one leg 2 inches shorter than the other - but still I did not realise the pain she must have endured every day of her life (in my defense she died when I was still a selfish teenage twit).
It is only now that I have the disease that I realise how ignorant to this disease I was - I too was one of the ill informed that just heard the word "arthritis" and thought it was an old people's disease and pain killers sort it.
I believe this is why we dont get as much publicity as cancer sufferers - because most of us bravely keep going without letting the world know how much suffering we go through. Also it wont help that our consultants/medics just say "with the right meds you will be able to lead a normal life".... these things just go against our appeal for more research.
Tina
The NHS documentary last night - about 24 hrs in the NHS - mentioned that stoicism was in short supply these days. Seems to me that we RA-ers are too stoical! RA doesn't kill you (usually) and can sometimes be fairly mild & these sorts of facts contribute to it not being taken very seriously research-wise. Plus it is mostly older women who get it ..... & it would seem we are not considered the most valuable members of society. You can go insane doing internet research into the causes of RA or any auto-immune diseases - there are no answers - you've said it all Sylvi.
Glad your husband is okay, and hope tomorrow is better for you too,
Luce xx
in reply to
On day of my party there was a funeral of a local man who was big in the community. He died from complications secondary to RA. He had an MBE and I just wish that his obituary had mentioned his RA. I think legacies and successful (well known) RAers need to be encouraged to come out and do more to raise awareness if what it means to have the disease. X
in reply to
I've been trying to persuade my two very clever grown-up nippers to develop a computer game / simulation based on the day in the life of someone with RA (or Lupus, AS etc.) for medical students. Computer games are all about frustration & rewards so I think it could work. They are young & don't seem to think it's a very sexy concept but haven't dismissed the idea entirely ...
I agree with Tina on this Sylvi, it's pure ignorance. How many folk have you met who profess to know how you feel 'oh I have a bit of arthritis in my little finger' !!! Really winds me up! I don't believe RA is taken seriously at times.
Glad to hear your hubby is ok but saddened to hear you are in so much pain again my lovely. Hope you can get some sleep and wake up to a better morning. Sending many gentle hugs. Love Janet xxx
Thinking of you both tonight Sylvi & hope you manage to get some relief from your pain soon,you must be shattered xx
Ps I should have said how sorry I was to read that your husband had been poorly too. I know how much you rely on him so it must feel scary when he is unwell. Glad he's feeling better now though. TTx
Sylvi, you've touched on such an important subject. My daughters a medical anthropologist and this is the kind of thing she works on - why some diseases get more attention than others. The only positive thing I can think of is that if treatments are developed in one area then they can be applied in another. But we and our organisations need to keep up the pressure. One thing is that new treatments can make a huge difference. Which is much more than just prolonging life. But perhaps that's a bit callous...
It is not cathie, they are my thoughts exactly. Its not callous to say it. There are many cancer charities and they look for a cure and at the end of the day it all we want.
Thank you all for askng after my hubby he is still not well,but at least its not his heart. You are all a lovely bunch of people.love sylvia.xxx
Sorry Sylvie, just coming into this blog. Firstly, so sorry about your husband. Hope he makes a speedy recovery. As he is your carer it must be difficult. You're kind of stuck between a rock and a hard place. Try and keep your spirits up.
I also agree with you re the cancer question. As my sister has recently died from melanoma I'm kind of split, as if they'd found a way of slowing down her secondary's she might still be here. But I still think that there's not enough being done to cure our wretched disease.
All the best
Carolyn xx
Hi Sylvie,
Long time no speak, but I have been reading all the latest.
Firstly, I hope you hear very soon about your anti tnf drugs, any idea of which one you will try.
Yea, fantastic things have been happening for cancer sufferers, and yes, it' a nasty complex disease that affects so many of all ages in different ways. Doesn't that sound just like RA !!
I have always been of the view that that the Medical world, just does not find RA so exciting, and I think more emphasis should be made to ram home just what a killer ( not in the literal sense but in a life changing way this disease is!) and to quote a saying I saw years ago on some site, 'RA will not kill you, it just takes your life.'
I know there is quite a lot of research being done, but not enough and not enough money spent. Powers that be take note! More TV programmes etc.
Thank you all, hubby was not very good first thing,but he is brighter now. He has gone to a funeral of a legion member and our daughter is standard bearer. I have just got in as i had to take his prescription sheet in to be filled as he needed them for wednesday. You know what drs surgerys are like over easter. I did a bit of shopping and i came home,hubby helped with the shopping into the house and then he and grace went off so i am resting now after taking my pain meds i am resting.
RE; this cancer thing,they know so much more now about cancer and how to fight it. I find that even the experts don't know enough about RA,this from my ra dr told me. There has not been enough research into it. THey know it can be hereditary but not much else. I think now our treatments are very expensive and so long term and so damaging to our bodies and yet they forget that WHY?. It would save them a lot of money if more research was done and yes i would happily be a guinea pig if it helped get a cure.
Glad to hear you husband is back on his feet again. Although I agree entirely that more needs to be done to understand RA and research solutions, I don't feel comfortable about saying that any disease is worse than another or should be more or less important. Yes, some of the cancers can be treated if caught in time, but there are many that are foul, painful and very distressing and affect lots more people. I tend to think that the more that is learnt about how the human body works, the more likely it will be that cures will be found for lots more diseases. After all, MTX was originally created to cure cancers, and hydroxy is a treatment for malaria, so we have benefitted from these bits of research even tho' they weren't for us to start with. So my conclusion is that health and medical research just needs more money everywhere, and it's not right to have to choose just a few diseases to concentrate on. Polly
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