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Rank: Advanced Member  Groups: Registered
Joined: 8/19/2010 Posts: 36 Location: Clacton on Sea
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Hospitals and having RA is a b***** joke, my meds arnt working and at my appointment in june he swapped me to the mtx injections, but i've just had the appointment through for when they are going to show me how to use them and its not till the 5th SEPT!!  . So i've been trying to get it under control for 2 years and now they expect me to keep going alittle longer to try something else and then it will be another 5 months after that before i'll get to see the rheumy again to see if HE thinks its working. Do you no what after a fighting row with my step father yesterday who doesnt have a ****** clue, my little one having chickenpox, working my arse off for my employers, trying to keep a roof over my head I'VE HAD ENOUGH, when will someone either in my family, hospital listen when i say i cant take anymore. Sorry for the rant this has really got to me this morning  I'm not normally like this promise
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Oh Sara-please don't apologise. I know exactly the feeling. The treatment for this RA grinds so slowly it sometimes reduces me to tears. It's okay for them to say---see you in 5 months, or "give it a month and we'll look at it again" etc. because it's OUR lives theyr'e messing with and we want to get on and live it. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Sara
Rant away - you have every right to do so by the sound of it.
Doing a Methotrexate injection is so easy. I would have a word at your GP surgery and see if someone there can show you. To have to wait until 5th September is totally unacceptable. Tell your GP how you are feeling and if they are worth their salt they will sort it for you and also give you some support.
All I can say is that we will listen. I know it is not much help in being there with you to solve practical problems but hopefully we can be there for you emotionally.
Keep talking to us and take care.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Oh Sara, no wonder you are angry! RA can be so exasperating because no-one is ever in a rush to sort things out for us.
Can you ring your rheumy nurse and ask if you can be fitted in much sooner to learn how to inject? Waiting till September is just not on.
Good luck, hope you can get the injections soon.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 5/12/2011 Posts: 124 Location: Wilts, nr Stonehenge
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Oh Sara,
You poor bugger, this is inhumain. I self inject, it's soooo easy. The nurse couldn't visit the second time, so I did it on my own, I wasn't going to risk going downhill just because the nurse couldn't get her arse into gear.
Make a fuss, be heard.
Good luck
Trace xx
PS, we all need to rant and I feel it's more understood and felt on here, it validates it, hope that makes sense xx
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Sara-F wrote:Hospitals and having RA is a b***** joke, my meds arnt working and at my appointment in june he swapped me to the mtx injections, but i've just had the appointment through for when they are going to show me how to use them and its not till the 5th SEPT!! . So i've been trying to get it under control for 2 years and now they expect me to keep going alittle longer to try something else and then it will be another 5 months after that before i'll get to see the rheumy again to see if HE thinks its working. Do you no what after a fighting row with my step father yesterday who doesnt have a ****** clue, my little one having chickenpox, working my arse off for my employers, trying to keep a roof over my head I'VE HAD ENOUGH, when will someone either in my family, hospital listen when i say i cant take anymore. Sorry for the rant this has really got to me this morning I'm not normally like this promise I'm just wondering if you could approach your practice nurse to show you how? YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member Groups: Registered
Joined: 8/19/2010 Posts: 36 Location: Clacton on Sea
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Cheers All,
The problem I seem to have where I live is we only have to consultant to see, we dont have rheumy nurses, we dont have contact numbers to call, we just have to wait until each appointment normally 4 months apart if we're lucky.
Although I have a nice doctor he says that I must bring up all my issues with the rheumy, like please can i have some xrays to see what damage has been done as i've never had one since i was diagnosed, please can i see a physio and the pain in my shoulders, and lack of sleep and movement that come with it, and coping with a 3 year old that wants picking up and cuddles but i never get any where with it i just get so upset that if i didnt seem to live where we do there could be more help for me/us and its so frustrating.
To be honest I have got the injections here, and i did inject when i did ivf but that was in an auto inject and cant use these glass made up mtx in it otherwise i would do it myself and not bother waiting.
Its just so annoying and frustration
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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If I were you in your shoes now Sara I would sit down and write a letter to your consultant, telling him what you're telling us and that you really do need things speeding up and sorting out as you can't go on. I've done this and it worked a treat. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hmm I think its time for a second opinion dont you?
get that numpty of a GP to refer you to dr gabriel at st thomas' and guys for a second opinion.
Re the chicken pox. Oh are they misrable.... apparently putting a little porridge oats bag in their bath is very soothing.
can you take some time off work with sickness? Just to try and take one thing off your plate for a while?
Sending kind support
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Sara
I agree with Julie. Write a letter or better still ring the secretary. I have done this before and they are usually very helpful and if they can will find you an earlier slot. Good luck
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Sara, I feel for you, it's no joke when you are in pain and have little ones who need constant attention, and worse when they are ill. The idea for the practice nurse at your surgery is a good idea. Make noise and you will be heard.  Don't worry about having a rant we all do from time to time. I hope you are seen soon and get help with your injections. Take care Lorna xx
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Rank: Advanced Member Groups: Registered
Joined: 8/19/2010 Posts: 36 Location: Clacton on Sea
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Thanks ladies, I'm feeling alot better this week So time to start sorting things out!! Firstly I requested a copy of a DLA assessment I had last year as they refused it, and refused after an appeal. It making very good reading with the assessor agreeing with my condition and help needed around the house.....looks like its time to fight!!
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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This is rubbish Sarah - I've been there too - it's not good enough. I agree that you should ring your consultant's secretary. Your GP will have their number. See your GP and tell him that if he is unwilling/unable to do anthing for you, the least he can do is get you the number. I've had to do this before and did get seen. Sadly many of us have found that if you don't kick and shout you get quietly left in the corner. Glad to hear your spirits have risen some. Good luck and take care.
Julie
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Sara. I just ring my hospital switchboard and ask to speak to Dr, whoever's secretary and they put me straight through. Good luck
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Sara
This is a complete shambles and your GP doesn't seem to be helping much. It's just as much part of his job to refer you to a community physio and for x-rays as your rheummy. Injecting is so darned easy I don't understand the problem. DO write that letter to your consultant and also ask for a second opiion. This isn't good enough.
Take care
xxxxxxxx
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Rank: Member
Groups: Registered
Joined: 6/24/2011
Posts: 21
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Hello Sara,
Have just logged onto the forum after not having been on for a few weeks. Sorry to hear you're having such a bad time. Life does seem very unfair at times doesn't it? I've just been up for a lot of the night with my 4 year old being sick nearly every hour, and on top of the RA it all seems a bit of a struggle!!
As you may recall, I am under the same Consultant as you at Colchester. They do have a Rheumatology nurse there linked to the consultant (I'm seeing her next week finally about the anti-TNF drugs) , so I am sure that she must be able to cover Clacton as well.
I too know the frustrations of not having the disease taken seriously and particularly getting them to do xrays regularly to see what joint damage is occuring. When I last saw the consultant in June whilst having a really bad flare up, only then did they do repeat xrays (I hadn't had any for 2 years) and found that my RA was very active and they needed to consider other treatment options besides the methotrexate.
From being an OT I am very aware of the need to try and minimise any joint damage before it occurs, and would therefore really encourage you to keep fighting, requesting more regular reviews and monitoring particularly if you do not feel the methotrexate is working.
I am finally seeing the Rheummy nurse next week (I naively thought this was to actually get the anti-TNF drugs) but it turns out it is only to have another disease activity score done (perhaps if they haven't done it you also ought to ask them to do this on you) to check I still qualify for them before they apply to the PCT. Having already got some joint damage though, particulary in my hands, I am absolutely prepared to fight if there is any problem in getting these drugs, as I feel this is the only option now to slow down my RA and reduce the likelihood of further problems in the future.
I would really encourage you to do the same, although at times it can seem just another big effort.
Best of luck and look forward to hearing how you're getting on!
Rachael xxx
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