how to cope

barking1

How do you all cope waiting for your appointments,Ihave my second rhumy appointment on 16th april and the longer im waiting the more panicked i feel, i need to know what my doctor wont tell me ,he has my results and i already know from an m r i last year i have arthritis in my spine but the exrays he said show both hips have arthritis , im 42 and scared i have previously suffered back problems for around 20 years on and off, but last year he thought i had something else going on due to extensive pains in neck, shoulders as well as my back i have been taking steroids since then up to seeing the rhumatologist, im know off them thank god they made me feel terrible , he told me that my bloods are high and the i have an aggressive form of inflamitory arthritis ,but he didnt say which one it was im scared it may be As because i have had problems with my Si joint as well does anyone have As that can advice me please it is really making me worry x jane

stickywicket

Your thread is entitles 'How to cope', Jane and my own way of coping, with anything, is to try to live in the present and not speculate about the future. I really do know that that is much easier to say than to put into practice but I still think it's best to keep aiming for it even when I can't quite achieve it.

You may have AS. You may not. You won't know the answer until 16th April so all I could suggest is that, between now and then, every time you find yourself speculating on the answer, you make a deliberate attempt to concentrate on something else. All that worry does is to wear us out so that, when we need that extra bit of mental toughness, we're too exhausted to have any reserves of strength.

I hope your worst fears aren't realised but, if they are, you will learn to cope and we'll be here to help.

barking1

Thankyou so much for your advice you are right i need to reserve my energy for now the stress is making me worse and im working as well so im constantly exhausted, i cant make it come any quicker so just need to try and relax it wont change anything if i know ,i think i am googling to much :roll: xx jane

dreamdaisy

Googling is temtping but oh so dangerous as a fair bit of 'info' out there is anything but. Don't google, come and talk to us as we know exactly what this feels like - even if we don't have AS. Having said that, I reckon that due to the lovely weather not too many are about at the moment - it's only saddos like me who remain indoors hunched over the keyboard.

I have learned over the years not to get het up about appointments as they do turn up and then they're gone. What I do to prepare myself is keep a diary of symptoms (not obsessively so, just a quick daily note about stuff) then if there is anything new to report I have a record of it. I also list any questions that I think might be relevant. Once that list is complete I stick it in my handbag with the appointment card/meth booklet/drugs list and forget about it until the day - and I can forget as my mind is organised (well, as much as it ever is!). I wish you well and we can organise pocket duties nearer the time, OK? DD

barbara12

Hi barking
I am terrified of hospital and people in white coats, but with so many appointments lately I have found I am more relaxed...now when the time comes for my op..that will be a different matter
I will be thinking about you , and I do wish you well with it all xx

frogmorton

Jane

l hate going to outpatients too :? l worry as well and would imagine that most of us on here do as well.

I worry more about being discharged like you I have no 'real' diagnosis sero-neg or palindromic and a few others, but the rheumy usually calls it RA. Though l am negative for Rfactor.

Before teh appointment l would spend some time writing a succinct list so you can ask and say what you want to and not get home feeling cross because you forgot something

and of course we will be 'with you' too

Love

Toni xx

Poppyg1rl

Hi Jane,
We've not met before, so a big welcome from me it's only natural to panic while waiting to hear results, and if you're anything like me, your imagination will run riot :?
My own way of coping is, deal with what you have to deal with today, and worry about tomorrow, tomorrow.
Worrying is natural Jane, and we understand how it is for you here on the forum more than most people, but even if the diagnosis is what you fear AS or similar, there are drugs/physio/treatments to help you, and your rheumatologist will discuss things with you, also, do try to write down some any questions you might have and bring them up during your appt. (I'm great at giving this advice! I'm always coming out of an appt and kicking myself because I forgot to ask a question )
If there is anything you are unsure of you know you can always ask us
Take care Jane, and do let us know how you get on. Xxx

Folara

I know what you mean. In my head I think of all the things I think I want to ask before the appointment but then I get really stressed and start thinking that they don't have time to listen to me moan or maybe I'm just being a pain or whatever. By the time the appointment has arrived I have convinced myself not to say anything and so come away feeling disappointed and as much in the dark as before I went. Quite silly of me really.

Anyway, try to take a deep breath and chill out for a while. Note things dOwn as you think of them so you don't forget to ask. The people are supposed to be there to help you so try not to feel like you shouldn't 'bother' them.

Good luck.

Fols x

hileena111

Hi
I think we all feel much the same......waiting for results....Just try to think about today....there is nothing that will change the diagnosis so
worrying wont help. I know that sounds as if I find it so easy...I dont...I find it very difficult but try to just live in the present until you find out.
The main thing is make a list of everything you want to ask him ....EVERYTHING.....not just a pain diary. All the bits and pieces that are worrying you. They are mostly good ...My ortho looks at me when I come in and sit down and will say.....wheres your list????????

Love
Hileena