I have had an unwelcome taste of the bad old days.

dreamdaisy
dreamdaisy Member Posts: 31,520
edited 10. Sep 2014, 07:08 in Living with Arthritis archive
Today an expedition to John Lewis at Home was deemed necessary by 'im indoors :shock: (and happily endorsed by yours truly :D ) but some preparation on my part was involved. His preparation involved locking the front door and the gate (because I was driving) but mine was somewhat more lengthy.

1. Take a diclo.

2. One hour after take two co-cos.

3. Thirty minutes after that dig out an old knee support - yup, things are that bad and I stupidly threw out many of my old ones when we moved. Twerp. :roll:

4. Hit JLaH complete with knee support, rollator plus spouse and happily spent money, most of it his and a little of mine. Lost him for some time in the big telly bit. Yawn.

5. Came home and removed the support with the kind of sigh that usually accompanies one's stays being slackened or removed. :wink:

I freely admit that I have not been that positive about humira in the past few years because it never did what was promised either on the tin and by my rheumatologist (and yes, it's a great shame that those who have found it does cannot be bothered to post to reassure those who are about to embark on that unknown journey) but I am now reasonably sure that its less-than-moderate effectiveness is dwindling. No matter, 'twas always on the cards. :| I hope that my Friday bloods will prove the case but who knows? The docs rely on the bloods to tell them things but all of us with an auto-immune know that lovely bloods = pain and not-so-lovely-bloods = minimum discomfort for us. As I have said on many occasions - they live with the theory but we live the reality.

So, on the practical front: the walking sticks are next to the bed and a pair of elbow crutches are in our en-suite. A new small bag of petits pois has been labelled 'Daisy's Knee Peas' and one of my favourite tea towels set aside for the use of. In case the OA of the hips is triggered a hottie is on the windowsill and another diclo has been consumed.

I know this is a pathetic bleat into the wind but this is unfair. :( I am feeling very sorry for myself but if I cannot tell you then who? Mr DD offered a listening ear but this week-end is a rare treat for him, a Monday which may be without work. He doesn't need this because he dealt with a major meltdown from yours truly on Thursday, and neither do I but it's here and it's time, yet again, to dig around and find another electric-blue Cope or two ( many thanks to Skezier for that concept) and some more inner strength.

I have just had an interesting (to me) thought: if you were a stick of rock what would be written in your core? In my case (and forgive the pig Latin) it would be 'Illegetimus nil carborumdum'. If you would like a translation please PM me. DD
Have you got the despatches? No, I always walk like this. Eddie Braben
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Comments

  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Hm. This is a rather disjointed post and it doesn't take a Brain of Britain to ascertain why. It's a true reflection of the state of body and mind of the writer.

    May I look at the facts another way?

    1. The knee is currently a pain in an entirely different part of the anatomy and yet you planned your expedition (Oh yes it was) with extreme care and practicality so that both parties could get the most out of it. You did not whinge or moan. You did the necessary.

    2. The humira may or may not be doing something. It's disappointing that it's not had you regularly dancing the night away but this is the real world. It may or may not still be doing things but, right now, it doesn't appear to be so you are, again, doing the sensible thing by getting your bloods monitored more frequently.

    3. You have taken further practical steps – getting round the house for the purpose of.

    4. Someone, in great pain, who has done all that is allowed 'a pathetic bleat' not to mention a few ((((()))))s

    5. No translation needed for your very laudable, stick-of-rock sentiments. As for me, I shall not allow my arthritis to figure even minimally in my stick of rock. Fancifully, and maybe more as an aspiration than a reflection of my true self, I'd like to go for Amor Omnia Vincit.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Oh DD, I can't comment on the Humira and bloods front as I only have OA, but I can send my sympathy that the meds are not working well for you at the moment and just hooe that your docs will be able to come up with an alternative for you that works.

    I have one elbow crutch, Fred by my bed at night, and by my side during the day while Ginger lives by the front door ready for trips out!

    Just want to say I am thinking of you,
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    'Illegetimus nil carborumdum'.
    Wouldn't fancy the chances of anyone silly enough to try with you DD even in your current parlous state.
    Janet Street-Porter has written an entertaining book with the English version of the above as its title.Thinking slightly sideways, has anyone had any news of Caliban?
    I'm so sorry(and how inadequate it seems to write that) that things continue to travel in the wrong direction for you DD, you really do not deserve it(and, hoping this won't be misinterpreted, neither does Mr DD)
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Having only just joined the forum I can perhaps encourage others with a success story with regard to humira. Having tried & failed on various DMARDs and combinations of those, and with my CRP/ESR reaching alarming levels in the range of 150 - 200, I was granted a biologic therapy. My rheumy chose for me and I began my humira journey. This was August 2007. I ' flew solo ' with it, as MTX put me in hospital with respiratory problems.
    Thanks to humira, the wheelchair was put into cold storage; I could pick up my little grandsons; & I could get about with a stick.My CRP gradually came down - the day it reached 18 was a cause for celebration.
    My rheumy would like it to be as low as 4, my GP thinks that's unrealistic. I now take hydroxychloroquine alongside humira, as after 7 years, while the bloods are Ok, I know that the humira is reaching the end of its shelf life. I know this because of all the tell-tale signs - the increasing levels of stiffness and more & more reliance on painkillers of varying strengths, plus the NSAIDs.
    I can't grumble, as I've had a good run - it was nice while it lasted.
    So DD, I do sympathise, and I hope things improve. You are so right when you differentiate between their theory and our reality.
  • mamasmurf
    mamasmurf Member Posts: 89
    edited 30. Nov -1, 00:00
    A quote from Stephen Fry : semper in excretum sum sed alta variat . ( always in the sh-- but the depth varies ) .However , as I'm really not fond of latin ; my stick of brighton rock will simply say : oh bother !
    mamasmurf
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Oh DD. Pathetic bleat away and as pathetic and bleats go, yours was neither. You very much deserve some help and control with things, it's not like you don't more than meet arthritis half way in finding a route forward you can share with it. I think you are incredibly brave to have even considered the JL expedition, there's no way I would have braved that. I hope you can sit about all day today having grapes peeled for you. Take care DD (((((((())))))))
    Hey little fighter, things will get brighter
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    How are things today?
    Re. Stick of rock, my old school motto
    Be strong and very courageous
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • dachshund
    dachshund Member Posts: 8,899
    edited 30. Nov -1, 00:00
    Hello DD
    i hope the bad old days do not stay long. on my stick of rock i would put dont give up.
    ((((((((DD))))))))
    joan xx
    take care
    joan xx
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
    Hope things are going ok today and Mr DD is having a break as well.
    My stick of rock would have lycra printed through it.Mig
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    I'm always worried about posting how well Humira worked for me as I do not want to get peoples hopes up. I have in the past felt I've let people down when it doesn't work that well for them. When I was initially given Humira I had very little information other than it will either work well or not at all.


    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    MY stick of Rock; whoever is happy will make others happy (Anne Frank).

    I try to live these words every day.

    Elizabeth xxxx
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Thank you, everyone, for your very kind words, they are (as usual) much appreciated). Last night was rough and this morning I didn't really get going until mid-day - Mr DD treated me to lunch out then I lurched round M&S and Monsoon whilst he did boy shopping. I am pleased to report that the knee support was not required, probably thanks to the diclos.

    I am pleased that humira has done the trick for some on here - my rheumatologist has always described as me as treatment-resistant and I know that, if my suspicions are proved correct, then gold is next on my arthritic horizon. Wouldn't it be ironic if that did the amazing? :lol: I know it won't but won't I be valuable? I'll have a backside full of gold once a month or so. :D

    I like your suggestions for your sticks of rock - I might change mine for my favourite Khalil Gibran quote: 'The deeper sorrow carves into your being the more joy you can contain.' I will need a very large stick to fit that! :wink: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    So sorry to hear you are not getting out the bit and the humira not going it's job. I am keeping my fingers crossed that you get an alternative soon that gives you some relief (((()))..................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
  • cherrybim
    cherrybim Member Posts: 334
    edited 30. Nov -1, 00:00
    Ah, gold DD ! Thirty five years ago it worked its magic for me, so much so that my RA was kaput ;-)

    Sadly because of the jolly old antibodies thing I was unable to resume it when I was bitten in the proverbial again by RA some 15 years ago.

    However, I am secure in the knowledge that I've a valuable rear ;-) which is a constant source of ribald teasing by my cronies, even though everyone knows there's no truth in the myth.

    Good luck with it, only problem is you can't administer it yourself, well not unless you are as much of a contortionist as I am;-) Cherry
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Cherrybim! :) Hello and thank you for replying, it is very kind of you. How are things with you and Mr C? I hope they are as well as possible.

    I know of another on here for whom gold was good but like all things, the good faded. Why does that always happen quicker than the bad? Maybe it's time to open DD's School of Fatalistic Philosophy. :wink: Today has been better than the morning suggested; the diclos are doing their thing (as are the co-cos to the point where the trammies won't be broached) but even so, this is an unwelcome reminder of how things were; the difference is the number of joints which are now involved. Life was simpler then, and I didn't appreciate it because I didn't know I should. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    How's tricks DD? I hope things aren't as acute today after a day of being gentle. I also hope you become the girl with the golden bum and that actually works for you. My rock would say something like 'Love, music and peace'...because I am a hippy at heart.
    Hey little fighter, things will get brighter
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I, too, hope today is better.

    I did gold too and it worked well for me until it started to affect my kidneys and I was unceremoniously whipped off it.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Today is OK, not wonderful but neither am I in the giddy heights of moderately grotty. :( Hey-ho, no matter, I will continue to take things gently and rest whenever possible. My skin is calming down now, which is pleasing and probably thanks to last week's meth. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Glad to see you are feeling a wee bit better today, lets hope you get to try the gold soon and most of all it WORKS!!!! I hope you are practising what you speak and are having a nice gentle day :lol: take care DD and be a good girl :wink: 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
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Like the others just want to wish you well and hope you manage to get back to moderately grotty soon.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Well, there I was watching Doctors (sad, I know) and then suddenly I was watching something else about two hours later. :roll: I hate conking out on the sofa because I always wake more uncomfortable than when I dozed off. Grrrrrrrr. I then rang a friend but had to abandon that phone call because the zeds returned in fine style.

    My body is telling me something and - in the words of Dr Frasier Crane - 'I'm listening.' I've texted Mr DD to warn him he's on washing up duties tonight. :wink:

    Right, cocos and food prep are beckoning. Deep, deep joy. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hope moderately grotty will return soon. Long live MG.
    (((())))
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I, too, hope the trend is upwards.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I've managed to get round Sainsbury's (an essential visit) but I'm paying for it now. Never mind, I might have a treat for lunch: I am baking a trout just to see if I can. :) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Hope the trout is a success, and that you are making progress back to moderately grotty.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich