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New Hosptial, New Problems Options
MrsWoman
#1 Posted : Tuesday, January 26, 2010 7:21:20 PM Quote
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Hello,

Just had my first appointment with my new hosptial today. I found it very upsetting. The lady doctor was very professional and on the ball but she pressed a couple of my buttons (understatement). When I go to appointments, I get quite tearful. So I was very emotional today , dont know why PMT or more than likely anxious about moving hospitals and making the right choice, The doc made several quick assumptions and said I was obviously depressed. This made me even more emotional that I couldnt really articulate what I wanted that yes I probably was depressed due to a whole load of shitty things that have happened in my life leading up to getting RA, but its been the recent roller coaster of care that has really wiped the floor with me.ThumbDown

She went on to say that not all aches and pains are done to RA some of them are menopausal, old age/wear and tear and depression. I said I was on enough tablets without depression, and I felt hurt that she questioned whether or not I had RA as I was on a very low dose of steriod and she couldnt see anything apparent not even my large knuckles to indicate RA. There 2 days ago i couldnt cut to cook or eat, and there today I sat, almost perfect in front of her. Sad

This then send me spiralliing down, questioning if I had indeed done the right thing by moving hospitals, my last hospitals were trying to get me on to sulphazine and methx which I refused as I afraid I would have a similar experience of not having proper monitoring. Thankfully the consultant assured me that they didnt work the same way , so thats a relief. Then I am being told that the option could be to stay on same medicine including steriods.... but we would discuss it once she had all the results, which left me uncomfortable as all the warnings I got from my last hospital about being on steriods over a long period of time. I told her the steriods arent doing it for me as the dose is so low and I am baring the pain not to occur side effects. RollEyes

So thankfully I rang up the research unit in charring x which i am participating in a trial to help other newbies in diagnoses and treatment and they confirmed yes I do have RA, which comforted me strangely to know where I am. I just want to get on with my life please knowing whats the problem. Though I realise that she has to check as i am a new patient and not assume that I have RA.

Of course the last appointment I had with the old hospital went very well, but I know I had good reason to change so its a case of weighing up the pros and cons of both as its not a straightforward swap. One of the main reasons I moved hospital is I felt I hadnt got a nurse to get advice or recommendations. So I asked for to be introduced to the nurse and I got a 6 month appointment. I know I probably can call her before that. Its just that things are not all I expected them to be.Blink

Cool
Maria_R
#2 Posted : Tuesday, January 26, 2010 9:08:55 PM Quote
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Hi there- sorry that this has happened to you- it is the last thing you need, and I guess you were hoping for a better outcome.

I'm going through a very bad patch myself at the moment- won't bore you but pain is getting worse creeping into different joints been like it for a few weeks. Some days i can hardly walk.Like I was before was diagnosed 2 yrs ago. I woke up about 3 this morning in floods of tears, couldn't face going to work as I've had so much crap there and feel such a failure.No support or understanding from colleagues. I'm going through a big 'why me' phase, I want my life back. Maybe this is all part of RA?

Thank goodness for charing x though. I know what you mean about it being a strange sort of relief. I felt like that when RA was confirmed- at least there was a reason for the pain etc.
little did I know what was coming to me!

Sorry to rant- hope things improve for you soon

Look after yourself
Maria x
dorat
#3 Posted : Tuesday, January 26, 2010 9:53:27 PM Quote
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Hi Mari,
Sorry it wasn't as good as you'd hoped , but it's early days and may hopefully turn out to have been a very good move.
You were bound to feel tearful, you had probably put a lot of pressure on yourself to decide which hospital to choose and now you've made the decision and probably feel that if this isn't right you can't change again. Well I hope you won't need to , but if you do it is possible.
You had a bad experience at your last hospital and together with feeling so ill, it's no wonder you feel down. Constant pain is enough to make anyone feel down and I'm sure inside us we can tell whether we are truly depressed or just very down.
When are you seeing the consultant again?
Try not to dwell on today's experience, just look forward to getting the results and then getting onto some effective treatment, with better monitoring this time.

Love and hugs,
Doreen xx
amanda_lewin
#4 Posted : Tuesday, January 26, 2010 9:55:03 PM Quote
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SO sorry to hear this Mari. I also can become very emotional at appointments and I am sure it is connected to having to face the illness full on and the realisation that you're dealing with something very serious that will not go away or be cured.

It was wrong for the DR to presume you were depressed, presumptuous even.

Perhaps you should meet the nurse and see what you think.

Trying SLZ or MTX may be something you will have to consider...the GP surgery should monitor you closely on this med.

Much love, have a large glass of wine and something which contains chocolate in it- that is medical advice by the way! LOL

Amanda
Calmwater22
#5 Posted : Tuesday, January 26, 2010 10:57:30 PM Quote
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Hello Mari
aww no do so hope it turns out be excellent and that she was just be precatious through for you,annoying isnt it when joints are awful then on day appear normalish.
grr.
u been threw alot
sending u big hugs.
lv melly
cuddly cats make my world seem so much more fun
merryberry
#6 Posted : Wednesday, January 27, 2010 7:02:50 AM Quote
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Location: North London
You could write a clear, concise letter to her?
'Dear Dr,

I am writing because I find it hard to stay my usual calm self in consultatins. I would like to tell you

this is how i feel in them
this is probably why
i don't think i'm depressed
can we please focus on X,Y, Z during our next appointment'

i think i would. hope htis helps. maybe even writing it out and not sending will help, if writing on this board hasn't already helped los anyway? xfx
joeyvt
#7 Posted : Wednesday, January 27, 2010 10:56:43 AM Quote
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Hi there,

I think you've done the right thing to move if you felt you weren't getting the treatment you needed. Shortly after I was diagnosed, the Rheum department went through a succession of doctors in a short space of time so every visit was with someone new. It was very distressing but luckily, I've had the most wonderful rheummy for the past three years or so and it's made all the difference. I think it's very important to feel comfortable with your team of doctors / nurses and confident in their ability to treat you as well as to understand you and your needs. It takes time to forge a new relationship so hopefully after another few visits, your new doctor will begin to understand you and the trust can build up.

I also find I'm very emotional at my visits to the doc / nurse. I think when people are asking you questions about what is going on, it's a release of tension and emotion that becomes rather overwhelming.

I really hope that you start to see the benefits of changing over and that the doctor can move towards getting you on the right meds too.

Joanna
jeanb
#8 Posted : Wednesday, January 27, 2010 11:23:51 AM Quote
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Hi Mari

Although you weren't happy with the new consultant, she was just doing her job. As she hasn't seen you before, she had to see for herself how you are and then weigh up all the evidence on what she has seen. I had the same thing when I changed hospitals, but now have built up a relationship and trust with my consultant. I think it is much better for her to question and make her own decisions, rather than go on other peoples' diagnosis.

I'm sure it will be OK

Love Jeanxxxxxx
MrsWoman
#9 Posted : Wednesday, January 27, 2010 10:32:42 PM Quote
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Hi All

thank you all for your support. I still feel quite traumatised from the afterschock of emotions at the appointment. I have made an appointment with my GP to discuss what to do.

I just feel stuck, I cant go back or forward as I am not happy with either situation. I think I might write a letter and be direct and say that I was disappointed with the consultation due ot feeling tht she assumed a lot within the short time it took to summise the reasons why I was depressed, whiles she doesnt really know me. Also it has been drummed into me about steriod use and I am not going to stay on a low dose and still be left in pain.

I was so freaked out at teh meeting that when she pushed my hand back my hands felt quite tight but didnt feel anything and today I am in pain big time - it feels like my writs has been crushed. My hubby is going to come with me next time for support.

I dont think I can take much more of this care as I am tired of the upset and having to push for everything. Its all a bit tiring.

Mari

barbara-o
#10 Posted : Thursday, January 28, 2010 12:09:11 PM Quote
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Dear Mari,

I am sorry that you have been left to feel this way and are still no wiser as to how your RA is going to be managed. I think it's very important to be able to feel that you can trust and can communicate with your rheumy. I think taking your husband along to your next appointment is a good idea. I initially found my rheumy unhelpful and abrupt in his manner; however, don't ask me why, but after taking my hubby with me his attitude changed and so has my treatment. I had previously complained for the past year that it was not working and on top of things the drugs that he had prescribed had caused damage to my liver.

Love,

Barbara
XXXXXX
monty
#11 Posted : Thursday, January 28, 2010 5:08:58 PM Quote
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Location: Leicester, UK
Hello Mari,

So sorry you are having such a rough time. I don't know whether you have seen it, but NRAS have a booklet called 'Explaining your symptoms' which is a guide to help you when attending the clinic.

This may help you to prepare for your consultation and keep your thoughts in order. If you ring the office, they will send you one.

I always write everything down that I want to discuss so that I get the best out of my consultations with nurse, GP or consultant.

Hope this helps.

Warmest wishes, Ann
"I cannot do everything. I accept that. Not being able to do everything is no excuse for doing nothing." ~ Helen Keller
FIONA752
#12 Posted : Friday, January 29, 2010 7:59:44 PM Quote
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Dear Mari,
I read your post and my heart went out to you.
R.A plays havoc with my emotions - but some days I feel just fine
and the next I can silently cry at any time of the day.
I cry for the loss of my old familiar healthy me usually.
(Bear in mind that the "old healthy me" vapourised about 15 years ago now!)
I should also add here that I also have a bad Spine condition as well now and
that my R.A is at present in some weird remission - so there is hope that relief will come
in the form of remission, of whatever duration for some of us.
I hope it does for you one day - either from the correct combination of drug treatment or
just out of the blue.
As far as Rheumatology appointments go - I am a nightmare!
It took me about two years to accept any form of treatment from my long suffering
Rheumatologist! ((Boy, was that stupid!)
However, he stuck with me, and listened when I explained that I wanted an old fashioned
tried and tested treatment as I was too afraid of side-effects to be any braver than that!
Nowadays, I believe that there are many new drug options available for people to try.
If I had never developed R.A, I would never have understood the bravery of R.A patients.
I hope that you can forge a good relationship with your Rheumatologist, however, for
me that took time.
Please keep us up to date with how you are getting on.
Best wishes,
FionaSmile
P.S I do find it worrying that the Rheumatologist didn't seem to realize that of course R.A
plays with your emotions and the fearfulness that we feel sometimes, particularly at consultations.
FIONA752
#13 Posted : Friday, January 29, 2010 8:03:15 PM Quote
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P.P.S Mari,
It is a great idea to take your husband with you. I always take my
partner along now.
I just reread the bit you wrote about having your hands pushed back and
feel your Rheumatologist needs to know how much it hurt you the next day.
Kind regards,
FionaHuh
amanda_lewin
#14 Posted : Saturday, January 30, 2010 12:35:38 AM Quote
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I pm you Mari, did you get it? I may be going mad though as I cannot actually find it! LOL
prioryc
#15 Posted : Saturday, January 30, 2010 8:13:03 PM Quote
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I am so sorry that you have been left feeling so let down. It beggars belief that any other humon being doesn't realise the importance of reassurance and being treated with respect at their appointment. Perhaps one day this person may suffer from an illness and realise just how important this is.

Eleanor x
MrsWoman
#16 Posted : Tuesday, February 02, 2010 8:25:49 PM Quote
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Hi All,

I am back from my meeting with my GP. She was very understanding and empathic, sne knows me qite well. Says it will ltake a while to get use to the new doctor. Anyway suggests that I send new consultant a letter to explain how i feel/felt during the consultation. Hubby came with me, although I didnt need him to. I just nice to have the company as it has felt since september the amount of medical appointmenst I have have been unreal. Seems every week theres something. Thankfully I have mild RA so I think I will be soon put on a biannual check, so hopefully there will be less disruption. Hopefully with less appointments I can start the exercise regime i need to keep everything working.




Mari
lyn2
#17 Posted : Wednesday, February 03, 2010 3:49:00 PM Quote
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I;m glad you're feeling a bit happier now. I think it takes time to get to know a new doctor, although she shouldn't have made assumptions about you.

Hopefully next time you go the appt will be more helpful to you.

Lyn
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