advice on attending hospital appts

purplelaces
purplelaces Member Posts: 5
edited 26. Nov 2012, 17:40 in Living with Arthritis archive
Hi, I feel kind of rude coming here and instantly asking for help before responding to anyone else's post, but I will get there.
Bit of background info, I'm 27 had RA for 10 yrs, I'm on Mtx and Rituximab and the disease control is massivley improved.
My concern now is that now they have the disease under control what can be done about the damage to my joints.
I have got an appt with the nurse in December and I am going to take my partner in with me because he is insisting that I ask for help with my joint problems.
I'm not sure if anyone is the same but I see the nurses every 6 months, before I go in I always plan what I want to say and what joints are hurting and what I would like to happen next but when it comes to the appt I just sit there and lose my voice, I can never ask for help, or mention painful joints or wonder if anything can be done for my fused wonky joints.
I have never taken anyone in with me for these appts but he is really wanting something to be done, which is understandable, but I don't like making a fuss.

I'm just really looking for some advice really, how do I get the most out of these appts without freezing and pretending everything joint wise is OK.

I think that part of is it fear that they can not do anything, and that this is me for ever, which wouldn't be the end of the world I guess, Its just scary thinking that this is my life from now on. I like being me, I just wish sometimes that my joints weren't stuck in funny angles and it would be nice to be able to reach things from shelves when out shopping. I don't know maybe i'm expecting too much.

Again i'm really sorry for jumping straight in looking for advice but I really don't know who else to ask.

Emma

Comments

  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    Hi Emma. It’s good to meet you but I’m sorry you had to find us. Please don’t apologise for looking for help. That ‘s how most people arrive here and I see you’ve already been trying to help on other threads which is very kind of you.

    You sound to be coping well with the RA and also doing well on the meds. I take methotrexate too but I’ve not got as far as rituximab yet.

    Appointments can be daunting no matter how often we do them and the more we want to be sure to get them right, the harder it is. I think it’s a great idea for your partner to go with you. These days, I always take Mr SW as that means not just moral support but also two of you to remember both what to say and what you are then told. As for what you do want to say, don’t be afraid to make a list and take it in with you, either to hand over or to just refer to. Your consultant will probably be used to people doing that.

    I really don’t know what, or even if, things can be done about damage already done but the consultant is the right person to ask and, with two of you there, I think it’ll be easier.

    I love it when you say you like being you. It’s a great, positive attitude. Clearly, your partner likes you being you too :D

    I hope you have a good appointment. Please let us know how it goes.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi if i was you i would write it down and then give them the list when you go in this way you will not loose your nerve and will not get tongue tied at least they will know of your worries if you do not tell them how are they to know val
    val
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hi Emma
    And a warm welcome from me
    Please dont apologize for posting , most people do before posting on other threads
    You are not alone freezing at appointments, I am the worlds worse , I have tried writing things down then leave it in my pocket, the more I go I am getting more used to opening my mouth....so you just bite the bullet go in and say can I just ask say something or ask something...hope it works...
    You take care xx
    Love
    Barbara
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Hi Emma

    Hello and welcome, I write things down when going for app's, symptoms and questions and also take someone with me if possible to remember what has been said, hope to see you around..............Marie xx
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Emma,

    Welcome aboard- and never be afraid of asking for advice or unloading-the lovely folks on here are a great pool of wisdom and experience.

    I always take some one with me to appointments as ears because I only ever remember half of what the medics say, also sometimes my husband prompts me gently if I struggle to explain stuff. I also take a record of how things are, times or dates of specific flares, and the questions I need answers to. My rheumy works through the list and puts it into my file.

    Hope your appointment goes well.

    Deb x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Emma and welcome from me too. :D

    As others have said, please don't feel you need to apologise by asking for help - we are a friendly bunch with lots of experience between us and are always happy to help where we can.

    Sounds as if you have had a really tough time with your arthritis and I am really sad for you that you haven't been offered help and advice regarding your damaged joints without having to ask for it. I too find it hard to ask for help at my rheumatology appointments - but actually, when I have done so, it has often been given without question. I find though that it's difficult to ask when you don't know what to ask for (if that makes sense).

    I think it's good that you will be able to take your partner in to your next appointment with you. Until recently, I always used to go in by myself, but now my husband always comes in with me and it makes the appointments so much easier for me. I let him know beforehand what I am planning to say and what I want to ask. And then if I forget, or find myself unable to ask, he will prompt me. It's also helpful afterwards, I find, to be able to have someone else's take on how the appointment went and to help me to remember what was said. I think it actually helps him too - and sometimes there are questions he wants to ask. After all, he is living with my RA too.

    My thoughts about your damaged joints are that you might benefit from seeing an orthopaedic consultant who would hopefully be able to assess the joint damage and to advise on whether anything can be done to help. I have discovered that, like most other medical specialities, orthopaedics is quite specialised in terms of which "bit" they deal with - so if you have multiple damaged joints, you might need several appointments I think. Have you ever had the opportunity to see an Occupational Therapist Emma? I saw one for the first time last year (after 17 years of RA) and I was amazed at how much useful advice she was able to give about ways to work with/work around inflamed and/or damaged joints.

    Really good luck at your next appointment Emma - and I hope you can pluck up the courage to ask for the help you need.

    Tillyxxx
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi Emma and welcome to Arthritis Care forum, Appointments are always daunting things, you get nervous a couple of days before the appointment (well I do!!). If you can, take a family member who your close to that is helpful or a very close friend to back you up. They may remember things from the appointment you don't. And as many have already said Write down anything you want to ask the doctor and remember to take it with you, it might be helpful to take a pad and pen and if anything is said just make notes of it in case you forget. Welcome to Arthritis Care you have done the right thing joining us!!
  • purplelaces
    purplelaces Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi guys, thank you so much for your responses and great ideas, I had always thought about writing down things, but there is so much "wrong" at the moment I think it would be a long list. I need to start making a list though, at least then I won't forget anything.
    I've never really bothered them and just assumed that they would pick out and suggest things for my problem joints but its not happened.
    I just really want to make the most of this appointment and not waste it like I have done my other ones, its the only time I ever really get to mention the RA and I need to start asking for help with it. :D i'm sure it will happen though.
    My partner is coming in with me this time because think he is getting frustrated with my inability to ask for help, although it will be nice to have him there as a bit of back up.

    My appointment isn't until Dec 11th so it gives me plenty of time to prepare.

    :D Thank you again for your lovely replies and for making me feel welcome here.

    x