Things are actually starting to drop off!

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jenzie06
jenzie06 Member Posts: 708
edited 29. Aug 2011, 03:38 in Living with Arthritis archive
Had a rituximab infusion over 3 months ago which hasn't worked. Now I'm mega struggling. Saw rheumy last week who was v helpful and wants me to try another antiTNF. I'm a bit nervous as I reacted with the two previous antiTNF's I've tried. First one gave me a stroke, second one closed my throat.
Anyway, as usual the organisation of sorting the drug takes forever. I'm not even seeing the rheumy nurse until the end of september and that is just to sort out the paperwork. Meanwhile, I'm in agony. Majority of my joints hurt but my left wrist is terrible. I'm typing this onehanded as I can bearly move it. My back is a mess. I have terrible pain in the base over the boney areas but further up I feel like I have a constantly pulled muscles. Sometimes it hurts to breathe. Been to gp who said try pilates. Told rheumy who sent me for xray to check for osteoporosis from steroids. But meanwhile I'm struggling to pick up my son.
I'm also shattered. RA is active therefore tired, I take more painkillers therefore tired but I feel like I have weights attached to my legs and arms. Spoke to gp who is now checking for diabetes from the steroids amongst other things.

I feel about 100. Fairly fed up and also found out this week that my mums cancer is not curable, treatable, hopefully manageable but she will always have cancer.

I want to go out for a day trip this bank holiday with hubbie and son but I'm struggling to walk with foot, knee and back pain. Its rubbish!

Anyone got any suggestions? Other than cry :(

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  • weejean
    weejean Member Posts: 346
    edited 30. Nov -1, 00:00
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    Aw Jenzie

    Things are just so awful for you. I wish I had some great advice for you but I dont. I am also so sorry that on top of your own health problems your Mum is so ill as well. As for managing to get a day out with your family, is there no-one who could borrow you a wheelchair or scooter for the day, I know its probably not what you want to do but at least you could get out for a while without all the pain of trying to walk. I really hope things start to improve for you and your Mum. I am sending you strength and loads of hugs xx
    Big Hugs
    Jean xx
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
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    hi so sorry that you are having such a rough time of it i also think wheel chair would enable you to get out and enjoy day depending on where you are going they might have some you can use get you son to google it you can make it fun by telling him he can pile all the sandwiched, swimming stuf etc on you but remember getting out does help so make the effort you will get pay back from joints but taking your mind off does help block pain a little.
    good luck top up on pain meds and make it a day to remember for all the right reasons val
    val
  • nanasue
    nanasue Member Posts: 465
    edited 30. Nov -1, 00:00
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    Hi Jenzie,
    I'm sorry to hear about everything, I don't really have anything helpful to say, apart from do try to find a way to get out without giving yourself too much pain.I just wanted to let you know I will send good vibes your way and leave gentle ((())) for you,

    Sue x
  • jenzie06
    jenzie06 Member Posts: 708
    edited 30. Nov -1, 00:00
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    Thanks for the replies.
    Val-I would get my son to google it but he's almost 16 months old and tends to be always sticky so I don't let him near the laptop!

    I'm hoping for better days ahead.
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
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    jenzie06 wrote:
    Thanks for the replies.
    Val-I would get my son to google it but he's almost 16 months old and tends to be always sticky so I don't let him near the laptop!

    I'm hoping for better days ahead.
    sorry this made me laugh out load in that case go to play park and eat ice cream
    val
  • frogmorton
    frogmorton Member Posts: 29,427
    edited 30. Nov -1, 00:00
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    Oh Jen :sad:

    You poor thing. I bet you are scared about the antitnf, but you certainly are between a rock and a hard place aren't you? Glad you have decided to start the (Oh so slow) process.

    I am VERY sorry to hear about your Mum. Good to hear she will be ok and things are manageable but horrible to think she has to live with it :sad: I bet a huge part of the way you feel is because of this. I still miss my Mum desperately and it's 4 years ago she died. So long as they look after her that's all that matters.

    Have you decided what to do this bank holiday?? I bet the wee one would be happy going out to a wacky wh*rehouse for a play you know and you two should try to have a nice meal together. Nothing over stressful, but you will have done 'something'. Important on a bank holiday weekend l agree.

    Love and hugs for you and your Mum

    Toni xx
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