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My immune system is an arsehole

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We’re on trial of drug number 3 now. The first two didn’t do a thing for my joint pain or inflammation. Meanwhile, my immune system is going into meltdown and one by one my joints become stiff and painful. This drug I am trying now will take 3 months to start working. I think we are into week seven or eight of taking it now. My rheum hoped that the cortisone injections would cover me until the new drug miraculously worked.

I was really, really awesome for a few weeks. I could drive a car, I had loooooads of energy and felt free to move about – well more free than I have in a long time. About two weeks ago the pain started to return. Everything seems to have escalated dramatically. It’s as though my body is punishing me for daring to try and be functional.

List of joints which now are inflamed and arthritic (in no particular order):

  • All fingers
  • Both wrists
  • Both ankles
  • Both big toes
  • Right elbow
  • Pelvis
  • Both Shoulders

My immune system is an arsehole.

I am mildly allergic to oranges, as in, I can eat them but if I eat too many or get any juice on the area around my mouth then I will get a rash or eczema. Yesterday, after I had sliced oranges for the kids, I made the mistake of eating a small piece. My lips are now so swollen it looks as though I have over indulged in the latest lip plumping chemical. Add to that the cold-soreish eczema on one side of my mouth and you’ve got yourself a really pretty look.

I’ll say it again. My immune system is an arsehole.

I’m trying to maintain some sort of optimism. I reeeaally want this new drug to work. Really, really. It’s just, it’s getting a little bit hard to be upbeat about it. To field questions from concerned or interested people without turning into a hysterical puddle of snot and throwing things at them. You would think a very tight-lipped “I’m fine” would give them enough of a clue to shut the hell up but apparently no.

My pain-killers don’t really do anything any more.  Beefcake  forced me to the GP today to discuss pain management. I would have preferred to hide my head under a pillow and moan. As it was we waited for nearly an hour to see the doctor but she really was lovely. It was the same one who referred me to the rheum and today she was all about getting things happening, a mental health plan (so that I can see a psychologist to talk through some of the strain that all this pain has been putting on my poor wee brain), a referral to a pain management specialist and some new pain relief meds so that we can get things under control while we wait for the arthritis drugs to work.

I cried. I didn’t mean to. Truth be told I am still pretty embarrassed about it but she was so very nice and so very sympathetic that I just lost it for a moment. Oh well. I am reluctant to go and see a psychologist but perhaps it will help. Maybe.

All of the children, to varying degrees, are becoming resentful and grouchy about my inability to do anything. Rhubarb, who at 14 should really be the most able to understand that it’s not really my fault, seems to take it as a personal affront to him.

Because he’s 14.

So, here’s to hoping that the new (very strong) pain meds will give me a break. Apparently I need it.

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10 responses

  1. There isn’t much I can do but offer hugs from afar and cross my fingers hoping that you find the right combinations of meds and secret elixir to keep you sane and together. Take care *hugs*

  2. Here’s to those last few weeks flying by, and the new drug working wonders.

    Hugs.
    .-= Lara´s last blog ..Of course you can… =-.

  3. Fingers crossed that your arsehole pain goes away. And hey, if you need to see a psychologist I don’t reckon it will hurt. At the very least you can unburden on them – they always have tissues!

  4. ((((HUGS)))

    Oh god I know how you feel.
    xx

  5. I shake my fist at your bad immune system. Good luck with the new meds.
    .-= Stomper Girl´s last blog ..Calorimetry =-.

  6. I’m so sorry sweetie…I know that doesn’t help, but I hope the new meds will. Soon. xoxo
    .-= badness jones´s last blog ..Comeback of the Day =-.

  7. I wish I could say more, but I’ll be thinking of you and hoping the new meds do the trick. I’m sorry you have to be in so much pain. I know how chronic pain begins to cloud everything.
    .-= tinsenpup´s last blog ..October 2009 =-.

  8. When you are 14 it is all about ME ME ME. David was very angsty when he was 14, luckily there were enough flashes of normality when he was nice, so I didn’t strangle him.

    I hope the pain meds kick in soon xx
    .-= Frogpondsrock´s last blog ..Comment Policy =-.

  9. Ali; haven’t been here for a while, but I’m sorry to hear you’re hurting. I have a little arthritis myself, Doc says it’s minimal; heck if this is minimal, how the heck do you all cope out there who have more than I have? This hurts enough that Panadol does nothing unless I take it by the handful. I’m about to ask my own Doc for something stronger too.

  10. Our immune systems can be a pain. They could always do us SOME good but they have been the responsible culprit for many deaths of individuals due to overreactions to allergenic substances. They are brainless. I can say this as I am Coeliac and if it weren’t for my silly immune system, gluten would not be doing the damage it does to my villi.

    Sorry to hear things aren’t going so well. I have a predisposition to arthritis myself and I know for a fact that it can only get worse :(

    Oh well, one day comes at a time… :-|
    .-= Kelly´s last blog ..AGAINST The Coeliac Society of Australia =-.

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