im new please help

mumoftwoboys

Post subject: im new. please help. im desperate . Posted: 19 Jun 2012 11:57



Joined: 16 Jun 2012 12:30 id like to say hello to everyone. im new to site. ive been seeing a rhuemy for 4yrs and still not sure if i have sero negative rhuem arthritis. at the weekend i could not stand up straight and was in sever pain so i missed work. i went to the doctors and she gave me a perscription for pain patches and a note for work. i went to work this morning and got a right mouthful saying i wasnt a team player, im not interested in the job and they think that im going to keep knockin work. im soo angry and came home. i really dont want to go back as their going to have this attitude with me and im not willing to work in this kind of atmosphere i have enogh to deal with, having daily pains.but we cant afford to loose the money. i have an appointment with welfare rights tomprrow to fill in forms for DLA but il be knocked back again for sure.
what can i do. who can help me.
chelle. xxx

PowerOn

Hello mumoftwoboys

I am new here myself and have found this site very useful for information.
Sorry not able to help you much just wanted to say hello.

Heather65

Hi mumoftwoboys,
welcome to the forum,sorry to hear that you have been treated so badly by your employers have they no idea what severe pain can be like ,i hope you can get some help and good luck with your forms ,
Heather

lindalegs

Hi again Chelle, I've just answered your thread on CC Zone and have suggested you ring the Helpline at the top of the page 0808 800 4050.

Luv,

julie47

Hi

I too have answered on the CC the page

but again, I will say welcome to the forum

Love Julie PF x

mumoftwoboys

thanks to all you guys. its nice to know i can come on here for a chat or a moan.
chelle

earthspirit

hi chelle - im only a few weeks on this group and when i came in here, a pathetic wreck cos of side effects of meds, immediately there were people there supporting me with kind words and useful information.

there are people on here who seem to have been through all horrors of pain and the treatments etc so its not just a voice of support but knowing voices where somebody will have been in the same or similar dilemma as yourself.

whatever your choice in going back to work or not, you need to tell them that if you do have RA its not just a bit of wear and tear on joints that people get as the age, but a serious potentially life threatinging autoimmune disease, from which there is no real cure, only a reduction of symptoms (hopefully)

so many people out there just really do not have a clue as all the media seem to focus on is cancer and heart disease, obviously both incredibly serious conditions, but RA is just behind them.

dont let them out there put you down and brush you off

good luck in whatever you chose to do and hope you are feeling better soon.

stickywicket

earthspirit wrote:

whatever your choice in going back to work or not, you need to tell them that if you do have RA its not just a bit of wear and tear on joints that people get as the age, but a serious potentially life threatinging autoimmune disease, from which there is no real cure, only a reduction of symptoms (hopefully)

Just to put that in perspective, mumoftwoboys, I think the emphasis should be very much on 'potentially'. I've had RA for over 50 years and never heard of anyone dying from it.

earthspirit

stickywicket wrote:

earthspirit wrote:

whatever your choice in going back to work or not, you need to tell them that if you do have RA its not just a bit of wear and tear on joints that people get as the age, but a serious potentially life threatinging autoimmune disease, from which there is no real cure, only a reduction of symptoms (hopefully)

Just to put that in perspective, mumoftwoboys, I think the emphasis should be very much on 'potentially'. I've had RA for over 50 years and never heard of anyone dying from it.

i was told in no uncertain terms by my rheumatologist, because i asked the question about damage to the body internally, that sadly some people develop internal problems with organs that can ultimately lead to death.

i think the percentale is very low, but there is non the less, a risk with uncontrolled disease and the ageing process.

sorry if i have actually brought this subject up but i cant see the point in hiding the true severity of this disease in its worst scenario. i myself am at a risk of dvt due to lack of mobility and the affect the disease is having on my blood and organs.

my reasoning for such intense questioning and research is because of my reluctance to take methotrexate while my body was in such an emaciated condition.

if i drop down dead then yea my certificate wont say RA but will have heart or liver disease or lung disease etc etc.

i will also dig around for some of the online links i found which were from the NHS medical profession and other scientific sources and post them so people can read for themselves.

should people not have the right to know the truth about their own medical condition?

dreamdaisy

Earthspirit, your lack of empathy is astonishing (and I speak as one of the more selfish people on planet Earth). I think you have been here long enough to realise that what has happened/ is happening to you is not necessarily happening to any one else, and let's face it you are hardly in a position to be so 'informative' when you have spent most of your life ignoring what has been going on with your health and are refusing to take a basic treatment (albeit for 'good reasons' in your view).

Hello mumoftwoboys, I have not answered before as I am self-employed so luckily have a very understanding boss. I know that there is a great deal of ignorance out in the world about arthritis, what it actually is and its impact on an individual. I don't know what you do but I think your employers need to learn a thing or two about what is ailing you. I too spent a while under rheumatology before they were able to finally give me a label but that changed nothing for me treatment-wise. What meds are you taking? I know from reading the 'Working Matters' part of the forum that employers are legally obliged to make adjustments etc - does your place of work have an HR or OH department? I apologise for not being able to help more but I wish you well and I hope that this distressing matter can be resolved. DD

earthspirit

DD i think somhow we are not communicating well and you are misunderstanding what i mean.

i have not ignored my own health matters, i have as my own doctor put it, been dreadfully neglected in the medical care i have been given.

i have managed to get this far without being dreadfully ill or the RA have a major impact on my every day life. however, the mega flare and the lack of treatment when i first tried to get it, ended up with me in A&E thinking i was having heart attack and the very rapidly got me into rheumatology and treated. however, i had become so ill and continued to be ill that my previous good health although painful one, turned me into an emaciated wreck with all sorts of things happening to my internal organs.

when i told people i had RA, including ones who were medically trained, as well as family and friends, they are tried to tell me that oh its ok you just get some meds to protect your joints. there is more than joints affected in autoimmune disease for many people.

i think any work place should be made fully aware of a potential dx of RA and realise that it is more than wear and tear and something minor to deal with. its bullying and intimidating and in their ignorance many people with RA do not get the support they need. ive seen the hospital wards of RA patients and its not a good or happy place to be. i think we must be on a communication breakdown because i dont believe you are giving RA the importance it deserves.

stickywicket

I’m guessing that DD, like me, feels that the first thread of someone who entitles it ‘im new. please help. im desperate’ is emphatically NOT the right place to be writing about RA being ‘potentially fatal’, especially as this is so unlikely that most of us on here will never have come across the concept before.

Your own case is, I think, quite exceptional. You write of having had this disease since your teens and yet you were fit enough to do all manner of athletic exploits in your teens-30s that most non-arthritics are unable to manage. I’m not saying you didn’t have RA then – only that, if you could manage all that, yours was an extremely rare presentation of it and, I guess, that was very unfortunate for you and it's just possible (I'm guessing) that because you had it, untreated, for so many years, internal organs have been affected. However, it is not the norm.

You write ‘there is more than joints affected in autoimmune disease for many people’. For some, I think but not ‘for many’. I do appreciate your own situation but I think, once again, yours is the exception rather than the norm.

I’m sure we’d all agree that ‘any work place should be made fully aware of a potential dx of RA and realise that it is more than wear and tear and something minor to deal with’. Many people on here have been doing that for some time but without scaremongering.

One place I must disagree totally with you is when you write ‘ive seen the hospital wards of RA patients and its not a good or happy place to be.’ Oh earthspirit, I’ve been in more rheumatology wards that you will have had nutritious drinks and I’ve had a ball. Mostly they were happy, warm, inspiring and encouraging places full of lovely, helpful people – much like this forum, in fact.

As for DD not ‘giving RA the importance it deserves’ – come on. She’s on this forum every day, helping people, encouraging people, easing them through diagnosis to acceptance. If she doesn’t regard RA as important why on earth is she wasting her life away assisting others to deal with something she regards as trivial?

wibberley

Hello chelle,

Sorry to hear your employers are being less than sympathetic about your recent diagnosis. Unfortunately, this happens a lot because most of us don't 'look ill'.

Now you've been diagnosed, your medical team should work quite quickly to get you on medication to dampen down the RA. This will be monitored very regularly eg if you're put on methotrexate or sulphasalizine, you will get blood tests monthly (at least) to check your liver levels etc. and if anything abnormal shows up, your doc will act accordingly. Fear not, nothing will be left unchecked to get worse. For a hypochondriac like me, getting regular MOT's is heaven!

You will be armed with all the facts regarding possible treatment, but be warned these come with a long list of worse-case-scenarios which will probably shock you, but please remember, the drug company is only protecting itself from potential litigation.

Like Stickywicket, I've had RA since I was young (aged 7). Yes, things have been bad at times, but there have also been times (decades long) when things have been absolutely fine...and I've yet to come across any scary RA wards. The treatments available these days are quite frankly brilliant....and light years away from the disgusting stuff I was given as a kid...mixed with jam and milk to help it stay down...which it didn't, and as a result I can't stand jam or milk! :shock:

Best of luck with that boss of yours - you might want to contact CAB to discuss your rights as an employee, or get some leaflets on RA for your boss to read - he/she needs some enlightenment!

Wibberley

Shooter

please dont give in to your employers take all your meds to any meetings it can take a lot of convincing with some (AND TIME ) you will feel all alone and that no one will just help you but dont let this get you down i know its very very hard ps been there (bt) some companies like to say in public they care but in private stress you out of the firm (mobed , managed out of business ) take care and stay strong shooter.

lululu

Hello mumoftwoboys You don't say what your work is but I wonder if an Occupational Health visit may be helpful to you . They will be able to make recommendations to your workplace to make things easeier for you.

I would like to echo what DD SW and Wibberly have said. They have said it soo much better than I could.

kellerman

I read this thread with total disbelief.
All meds have side effects.....not many get them.Like Sticky says the companies have to protect themselves from people who wouldn't hesitate to sue.
Its a choice you take as nobody can force you to take them.Anything surely is worth a try if it helps.
My granmother had RA from a young age. All that was available to her in the war years were gold injections. They didn't do her much good.
She died at the ripe old age of 89. She had a stroke.....

Chelle....Welcome to the forum. There is terrific support from the posters on here.
Now..as regards your work. I don't know much about this 1st hand but my daughter has AS at the age of 35. She is a postie.
She has had to start working part time but her immediate boss wasn't very happy about her doing this.She has however the backing of OH and the union.
Whatever you decide I wish you well....please let us know how you get on. May

lululu

Chelle I can't emphasise enough how important Occupational Health may be to someone in your situation. They can make recommendations to your workplace to make work soo much easier for you. You can find them via your local County Council. Please give them a ring. Your employer should also be told that your condition is covered by the old DD act (can't think what it is called now sorry).


Chelle OH can also advise and loan things to you that may make life easier at home too. Go on call them now!