Well as some of you know I have gone through the last year since my diagnosis in March 11 with lots of pain, foot and neck problems, lots of steroids and various different ra and anti tnf drugs, so much so that my work and occupational health stated I wasn't fit to work and i was retired in May.
Since then i submitted a requests for my pension which has been the most stressful time for me as you have no job and they say you are not fit for work but then you have to wait on another doctor giving you permission for a pension. So no money coming in and stress and out of my control, all major, major problems to me.
So as you are entitled I asked to see the Rheumys report to the pension people and its like he never met me, " I have a mild background of inflammation with severe flares"... when did i have this "mild day", did he not remember this is when i had steroids every 6 weeks so i can function.?? He cannot say if I will be better cos maybe the meds will work sometime?? AND ok then I have Ra, neck discs burst , diabetes and problems due to steroids, etc etc and this might eem maybe mmm possibly make it difficult for me to work, yeah,, dont put yourself out please!!!!!
I feel so let down and told his secretary to tell him I'm disappointed that even though I only ever see the sidekicks he should know me better than that and that's why i sat outside his office crying for help the other week. Oh and why then do his letters from clinic that he enclosed say severe ra and not responding to treatment, still has active inflammation in every one, I hope the pension people read these ones that he enclosed.
I told her to go ahead and send the letter cos hopefully the stuff from managers at work and the gp and the work occy health will be enough with his "i dont think she could work day to day" stuff
This whole disabled, dla, pensions, blue badge stuff makes me feel like some sort of criminal. If i did not need to pay the mortgage I wouldn't apply for benefits...I hate it and feel like a fraud, and i know i'm not. I wish i didn't have Ra, i wish i was at work, i wish i didn't hobble with sticks and could go shopping again and I wish i wasn't sick with diarrohea and sore throats with my Humira which I was praying would be my wonder drug.
I hate how this government seem to think that i am a timewaster and need me to go through lots of assessments as embarrassing as they are to get any help. I know its harder in America but we pay tax to get this help in britain but the barriers are unbelievable and then you hear that in Europe the standards of care are higher, well i now believe that.
So as you can tell i am angry at the world today and the doctor for not just simply saying yes she is too sick to work thats why she is not working.
And guys I'm not sorry for moaning I know you will read this how I mean it to be read.
Axx
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allanah
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It should be left to the people who are treating us not those jobsworth who have never seen us or know anything about us. I know there are some who milk the system and these people make me see red when i am unable to work due to this wretched disease.
Hope you have success allanah.xxx
Hi Allanah,
My sentiments exactly, let off steam if you cannot do it here, where else is there.
You know you're not a time waster, benefit fraud, or cheat. Your family and friends know that too. We know the same. So really don't give a £&%^*+ for what some anonymous person somewhere might wrongly think.... it's not worth your time. As long as rheumy has written the magic words of not being likely that you can work, then ignore all his ifs and buts. Soon this will all be sorted, and you can move on. Until then, vent away! Better than kicking a cat for sure. Take care, Pollyx
Definitely don't kick a cat, but remember that you are seriously ill, and someone with a brain will read your application and realise that! It's sometimes hard to find that - even though you feel dreadful on a daily basis - people aren't necessarily accepting that fact, but, as Polly rightly said, you and your loved ones know what you're going through, and some faceless rheumatologist who barely makes time for you is only of value in as far as getting that application agreed.
Think I was upset at the ifs and buts as he was the one who looked me in the eye and told me RA doesn't only affect your joints but also your soul, I thought he had understood how I was and if he had mentioned how many steroids I needed and still have mild background inflammation and severe flares.
i know what you mean exactly how you feel. I got turned down by DLA again nearly two wks ago after the visit from their doctor. I can't deal with the stress of it, so hubby agreed to" let it go", and we'll managed some how.
It's one of the reasons I've pushed my rheumy team to help keep me at work. Gp has already suggested that I should think about giving up work on a permanent basis. But how would I live? It's so hard to get benefits now and unless they retire me on ill health, there is no hope in cracking the benefit system. Besides as I've just turned 50, I don't think I am old enough to retire now. So onward I plod. Besides I am not mentally ready to retire.
Good luck hun, sending you lots of hugs. I do believe you will prevail in time, so keep slugging at it!!!
do not give up on DLA have a break and then hit 'em with an appeal. join vasculitisuk and download the route map , it as useful sections on ra and some of the meds we take and the side-effects. the benefits and work website is also a good source of info - does the admin on this NRAS site have access to the pdf guide for dla appeals? I joined the b&w site and paid £20 to download the dla guide. It explains how to answer each question and has a useful 1 page section you fill in and helps our g.p. to answer the Q's dla ask him.
regards, sandra
Hi Allanah - nothing to add but to offer my support and tell you to hang in there.
Sometimes these people couch their words in a language that is very alien and inaccurate sounding to us but to the pension people this may well read this differently and see the severe flares as being the bit to go by.
It's very confusing - I recall a few months ago the 2nd GP, a woman I see sometimes, telling me that my main GP says my RA is quite severe compared to other patients in our practice and he believes I should be on anti-tnfs before long. She said "you do know this - he has told you this is what he thinks hasn't he?" and I wondered if she had mistaken me for another patient because a) i haven't thought of myself as having severe RA and b) he certainly hasn't indicated that he thinks I have or that I should be on a biologic treatment.
It was quite baffling and my point is that the way these people communicate face to face seems to be different to the way they communicate on paper to officials or to their colleagues so we can often feel betrayed by these contradictions from our health professionals. They see so many people and I guess they are covering their backs too - but it sucks nonetheless. I was so optimistic about the man who looked you in the eye too. Big hug. Tilda xx
Big hug for you Allanah(((((()))))) Watching what happens to your pension request as I have requested mine. My occupational health Dr has told me she thinks I am very wise for finishing and will support me. She says she can't guarantee I will get it but that she has dealt with quite a few people with RA who have, altthough I keep thinking 'what if they don't give it to me?' There is no way I could work at the moment. I keep hoping that something will kick in and I will feel able to do something ( we have got to remain positive). Shattered at the moment as went out with my mum and 12 year old nephew who is over from America. Have realised I can only do something for a couple of hours and then I suffer.
Yes my occy health and everyone said they would support me and I am probably over reacting. But the only reason I agreed to stop work was A) cos i felt ill and b) i thought i wold qualify for a pension so to get lots of letters and needing more info is so depressing. However I know i couldn't work so there's no a lot i can do.
I had my mum, sister, and nephew last week and still recovering, my daughter is tidying up the lounge as we speak as i'm shattered. Also my two boys and their girls are coming tomorro to see us before we go on holiday. I havent the heart to say aaaargh i'm too tired from last week and trying to get packed!! Oh well the house will just have to stay messy( my cleaner that i use my dla money for is on holiday too!!Think i pay her too much!!)
I could scream with frustration for you Allanah. But thanks for sounding off - you've expressed it for many of us here I reckon.
Now.......point me in the right direction and I'll go and sort him out for you.
Judy
xx
Allanah,
You have every right to be mad, I would be too if I was in your situation. Your doctor definitely should have stated that you are too ill to work, I really think they live in a different world to the rest of us. I wonder how they would cope if positions were reversed.
I hope you feel better getting it all off your chest.
Mary x
There must be doctors and rheumies who get RA from time to time. I wonder if these would just have to quit work eventually because it would be so difficult giving injections, examining patients and keeping up with the work load I imagine. If only some of them didn't lose their empathy somewhere along the way. If any are reading this then say to yourselves "what if this were me? What if this were my sister or my brother or my child?" and that would surely stop them from writing indifferent nonsense about us? TTxx
You know I know and it is awful. I had one the other day with FF insurance, how he made me feel like a fraud, was by saying very little & not reacting to what I said. Maybe, that's how they deal with everyone. I just told the truth, I couldn't exaggerate.
When he looked at my hands he asked me had I ever seen hands that were damaged by RA, I had already written on the form, 3 aunts and my gran, of course he hadn't read it! F..F.... S..., I said well I had had at least 15 wrist injections possibly that had saved me from gross deformity, they are still weak and damaged, and while not grossly deformed thank god, are affected .
I will probably get told to get my ass back to work by x or get lost... But I am resolved to not worrying.
On a funny note ( maybe) my hubby moved his office home a year ago, so he can help me yeah yeah. Anyway, he is going to pay me to clean it, just tidied it gently this eve. Also, am taking a monthly stipend from my son, who just got a great job from college, I have supported him for 5 long years. So hey, no more mrs. Nice Guy.
Seriously, you pay into things all your life and you need some support and they just make you feel such a fraud, well I for one am going to fight. If I have to shout & scream I will get what I am entitled too.
My life is not a rehearsal, and I will not ruin my health any further, just to please others ( er fingers crossed) lol,
Had the day to reflect on my anger and unfortunately I am still annoyed. I just wanted him to state what the nurses, occy health, gp, and managers had been saying to me and to say it loud and clear.
I normally will fight on but for some reason when i get yet another brown envelope through the door it just reminds me of my situation and the embarrassment and anger at RA.
But I WILL have to stop worrying about nothing and whatever will be will be Que sera sera
I think you need to see your rheumy consultant again (not a side kick) take a copy of the report and go through it bit by bit and ask why it has been said that ............ and ask him if he agrees with the answers given in the report and why. Did he sign the report or was it his side kick ? Ask him if he has another patient with the same name or same initials (anything is possible). Try to keep cool while you are talking to him. If you still don't agree with his comments how about considering a change of rheumy consultant?
Dont give up on your pension or any other benefits - appeal against their decisions. Perhaps a visit to CAB may help.
I realise it is making you angry and stressed out but you know just how ill you are and how much pain you are in so don't let them win.
Have a restful holiday and when you come back start a fight campaign !
I really feel for you, you have every right to be angry and will probably stay mad as hell for a few days, and I honestly can't blame you. The system stinks when your so ill and it steals what little strength/energy we have.
I know it's hard to do at the moment but keep fighting your entitled to this and have paid for it for many years both financially and with your health!
afraid I have no advice to offer you in dealing with this awful system. Just wanted to wish you good luck with fighting this. Don't let it spoil your holiday. Very best wishes.
I will fight even if i have to appeal, dont know why he said that i am in agony today with the worry and will need to calm down as i feel a flare coming on!! Thanks Axx
I agree with everything already said.If you read any of my earlier posts you will notice that I too am going through the same.
Incompetent "professionals" who really have no idea of how this illness effects us on a daily basis and I have to say in my experience they have no consciences either. The way they turf out their reports without even reading our files, beggars belief. I am really trying to focus on the fact that there is no way that I can work in any way, shape or form, now or in the future. People that know me and my life, all family and professionals know this. Ironically it was me that had the hardest time in accepting it, when I too was in a professional role in child protection and doing my best for others. It has come as massive shock not just having this illness, but the very way other professionals who have known me for several years, suddenly treat me as If I dont exist or if I do, that I just dont matter anymore.
So I was sad to hear of your fight against the system but thankful to you as I now know I am not alone in my fight either. I am on my 1st stage of complaint after being dismissed and waiting for IHR to be agreed upon. I wish you all the luck in the world and hope you have good news soon, as I know this will help me feel that there is justice out there. I will let you know how I get on in the next 3 weeks or so. Take care. Chin up and you can always message me.
hi yeah, i was a health visitor AND It was the most stressful job i had, especially my "collegues"". I am still angry when i read the letter it says i got ra in june when i got it in March so i will call them again i think. thanks Axx
I could be your double! I am waiting to go into hsp for infusions - over 3 weeks ago now !! At the moment I am in alot of pain with all over swellings-feels like when I started all this over 4 years ago.
Well lets be hopeful, tomorrow may bring some positive changes and our flare ups may cease and we will both receive IHR notifications-wishful thinking eh??????????!!
Oh Allanah, I am so sorry you have had to go through all that. But, I do remember my experience. Over here, it almost always takes 2 more appeals after the initial app. to get Social Security Disability. We pay for that, as Social Security is taken out of every paycheck every worker gets. When my 3rdfappeal was sent to the judge in Cleveland, he wrote his letter, stating immediate approval, and this case should not have gone this far, it should have been passed the first time. So, alot depends on that individual you are talking to. Some are apparantly more interested and understanding than others. Still, it's demoralizing to have to submit yourself to all that pleading to get what you are entitled to.
Sure hope you can de-stress very soon! Love, Lxxx Hugs too ()()()()()()
I am going to see if I can get any support as hands and wrists stuffed ...sooo painful..even when not using hem......dont hold out any hope ...but will try welfare rights first.... any advice?
hi allannah, have you got copies of all that? if so go through all the wrong bits and write your version below. request that they read the other letters he supplied which are a better report on you - keep copies of these to use for DLA application.
rant'nrave as much as you need - people here understand.
ahhhhhh alahna i kow how you feel i went through all this last year and it made me so ill with the stress i eventually got esa work medical retirement wanted to withhold my lumpsum and have 2 yerly checks told em stuff it and took early retirementinstead why should they sit on my money for 8 years when they no im notfit to work its is a battle but i learned do not give up this is what the dwp want fight fight and fight and appeal etc please do not give up i know its hard i used to cry every day good luck hun xxxx
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Gina.
How do you get moving?
How do you know
How well supported do you feel by your RA department
Hoping someone can recommend a rheumatologist who believes you can still have RA even though inflammatory markers are normal.
