Hello

annie41
annie41 Member Posts: 25
edited 19. Jan 2019, 20:57 in Say Hello Archive
Hi everyone, i know its been a long while since i've been active on this forum. I'm sorry for the silence. i guess that i've just had a crazy couple years. my RA has been really out of control, so i've been pretty ill and have been in and out of hospital since i last posted on here. I am really glad to see so many new faces and some familiar ones as well. to all the newcomers, a very warm welcome to this fantastic group. you are definitely not alone :)

Comments

  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hi Annie41,

    Good to see you again but not so good that your RA has been running riot! How is it going now? We need any tips you have picked up for putting the pain aside for a bit. My latest diversion has become knitting! My oldest g'son who is 10 asked me to teach him to knit so needles have been picked up. Do you know one bright spot is that all the wool gets your hands toasty warm. I’ve never got the hang of finishing anything - I lie I did finish a jumper for myself with very fluffy wool and some animal on the front in the late '70s - I did wear it too

    Take care
    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, I apologise for not remembering you. I am one of the lucky ones for whom the dross has stayed at a constant level, currently my OA is being troublesome whereas back in the summer it was the PsA. I hope that things are under better control for you now. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,104
    edited 30. Nov -1, 00:00
    Hello again, annie, and welcome back.. I hope you can manage to stick with us now as you'll be a great asset for newbies.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • annie41
    annie41 Member Posts: 25
    edited 30. Nov -1, 00:00
    Thank you, its gd to be back. Unfortunately my arthritis has gotten out of control, because my body has started tolerating my arthritis meds too much, so they are not as effective as they used to be. Due to this, I have had to have a few revision joint surgeries since i last posted on here, so i've unfortunately been in and out of the hospital quite a bit over the last couple of years. There are a couple of things that work for me, when i do have flare ups. I find that lying hot water bottles near swollen and inflamed joints works well. Also, I find that having hot showers works well, or lying in a warm/hot bath for a while works pretty well also. I also use braces and supports to distract me from thinking about the pain that flare ups can cause.








    moderator wrote:
    Hi Annie41,

    Good to see you again but not so good that your RA has been running riot! How is it going now? We need any tips you have picked up for putting the pain aside for a bit. My latest diversion has become knitting! My oldest g'son who is 10 asked me to teach him to knit so needles have been picked up. Do you know one bright spot is that all the wool gets your hands toasty warm. I’ve never got the hang of finishing anything - I lie I did finish a jumper for myself with very fluffy wool and some animal on the front in the late '70s - I did wear it too

    Take care
    Yvonne x
  • annie41
    annie41 Member Posts: 25
    edited 30. Nov -1, 00:00
    thank you dream daisy and sticky wicket for your kind words. its gd to be back. I missed messaging on this forum quite a bit since my last post. Dream daisy, I am sorry to hear that you are having a rough time with your OA and your Psa. I know exactly how you feel. I know how unpredictable and frustrating arthritis can be and how it can at times, seem like a rollercoaster. I do hope that you are feeling a little better now. but from the sounds of things, you are one of the lucky ones. Sticky wicket, i'll try and stick around now, as it will be great to be there for the newbies and for the regulars as well. I hope that you have been as well as can be though. wishing you both a very warm, happy and merry christmas and a better and happier new year to come.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I never thought of myself as lucky before, I'll try to adopt that positive approach! Things are always tough but that's OK because I know where I am: the hope of the meds actually making things better is long gone because they don't and never have. Control is the name of my arthritic game and the PsA is controlled. To a certain extent I can control the activity level of the OA but not when the weather becomes a factor. The early days between 1997 and 2008 were a rollercoaster but not any more, it's all familiar and manageable.

    I hope you have as pleasant as Christmas a possible and I hope to see your name again soon. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • annie41
    annie41 Member Posts: 25
    edited 18. Jan 2019, 20:51
    Hi Yvonne and dreamdaisy, I hope you both had a very gd xmas and new years. I hope that you are both as well as can be as well. To Yvonne, unfortunately, MY RA has been in an acute status for the last few months, as the winter weather always makes things worse for me and all my major joints tend to revolt as well. Also, the meds that I am currently on have stopped being affective, so i've also been battling an extended flareup for the last few months. I tend do a little sketching, when my hands and wrists start hurting, to keep them mobile.I also tend to keep myself distracted from pain and stiffness by going to the gym for a good solid workout and for a swim, as I find that swimming eases the pain and stiffness. After that I treat myself to a nice soak in the jacuzzi and sauna, as i find that my joints love the heat. After I get home from the gym, I rest in bed, and i watch my favourite old tv series re-runs and I treat myself to some good food .
  • annie41
    annie41 Member Posts: 25
    edited 30. Nov -1, 00:00
    To Dreamdaisy, to me you sound a little lucky at least, as it sounds as things are going ok for you at the moment. Unfortunately for me, things have not been going well with regards to my RA for the last few months. Sadly as a result of my RA being out of control and the further damage that my joints have sustained, I have been told by my orthopaedic surgeons, I will have to undergo multiple major surgeries on the affected joints in the near future. My doctors, nurses and other specialists are doing their very best to keep me out of a wheelchair for as long as possible, but I have been told that I should start looking into either renting or buying a wheelchair in the next year or so. But despite everything, I am trying to keep thinking positive and I am trying to enjoy everyday and my life as much as possible. i refuse to let this awful illness dictate what is going to happen in my life.I hope that you had a gd xmas and new years and I hope that you are as well as can be.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I have a wheelchair and a mobility scooter, I don't use either of them regularly (nothing to do with vanity, pride or the supposed loss of dignity) but they are there for when things are really not worth trying to overcome.

    I would not describe anyone on here as being 'lucky', that is thoughtless and unkind. Whether one is just beginning or is many years in, has OA or an auto-immune or both, just one affected joint or many more, the pain the disease causes is debilitating, exhausting, frightening, the reduction in the quality of life demoralising and the fact it remains incurable is, for many, astonishing and unbelievable. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • annie41
    annie41 Member Posts: 25
    edited 30. Nov -1, 00:00
    to Dreamdaisy, i apologise if I offended you, but i completely agree with what you have said. whether one is new to this awful illness, or has been battling it for a long while, RA can be very unpredictable, it can be extremely frustrating, ad it can definitely be exhausting.I tend to use my crutches when my arthritis starts creeping up towards the end of the day. Also, as my quality of life is pretty much nil, the decrease of quality of life is at times very demoralising, tiring and annoying. But to be honest, i have stopped holding my breath with regard to scientists ever finding a cure for this horrible illness. DD
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I'm not offended in the slightest but I have no doubt that some on here could be if they felt that their discomfort was being belittled. Far more read than post and they might feel that they will not be taken seriously by someone who is worse off than them.

    A cure may be found at some point in the future but I'll be joyously long-gone and care not. I've kinda cured it by not having children, the dross has stopped with me and, being an only, there was nowhere else for it to go. Arthritis is not a glamorous disease, it's not dangerous or life-ending: it's merely life-changing, mundane, dull, as common as muck. There are around ten million arthritics in the UK, at least VA are trying to raise awareness and this can only be a good thing. I think they are presenting arthritics in a rather hopeless light but that's better than nothing.

    I'm sticking to my arthritis ABC: adapt, believe, compromise, a process I began as a child. The docs are doing their best, it's not their fault that it's not enough but it's good enough for me. I am blessed to live in an age where there are the drugs, the aids, the surgeries when needed. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • annie41
    annie41 Member Posts: 25
    edited 30. Nov -1, 00:00
    to dreamdaisy, I completely get what your saying about other people on here who might have taken offence to my comment. I guess that because my arthritis has been in an acute status for a long while, that i've stopped believing that a cure is anywhere on the horizon. I guess because i've only had RA for about the last ten years and that I'm young still, that i've just been finding things a little extra frustrating recently. I agree that VA are at least trying and are continuing to raise awareness of how arthritis affects the young as well as the elderly. I guess that they are just trying to do their best with regard to raising awareness n all. I actually really like your arthritis abc. It sounds like its really helped to keep you thinking positive. If you don't mind, I may borrow that. I defo think it may come in handy for me. Also, i second that all the healthcare professionals involved in my ongoing care are doing their very best to provide me with the very best care possible. And in a way, I guess what they do is never enough, but I am very grateful that I am under the care of the best specialists, doctors nurses etc and It is more than enough for me. I'm also blessed and very lucky that i live in an age where there are amazing medications and drugs that can really help, there are state of the art aids and adaptations that can be made and that there are surgeries available if needed. :)
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