Please remind me why I take the meds.

dreamdaisy

Thank you everyone for your kindness in replying. bobbyger? Everyone has the right to whinge and moan 'cos whatever it is we are dealing with sometimes it does get too much and it does overwhelm - that fact that others may be worse off is never relevant. I know you are now very concious of the countdown towards your operation - yes, it's an uncertain time but as I have said to you before I am sure it will all be fine and give it a few months you will be running about, all fixed and lovely! That is positively a good thing!

roses1 I am glad the meth helped your mum. It is a good drug for quite a few - nanarose for one! - and it does help more people than it hinders, I suppose I am sulking 'cos I ain't in that elite. Never mind, eh? I must be in another elite, I just need to find which one!

traluvie, thank you. The unremitting optimism does get a little tough, so a day off does help! Remember I am a deal further down this road than you - so far you seem to have found a set of doctors that have noticed what is going on and are trying to help, so that is a good thing. I went seven years with no intervention, five because I believed the stupid GP who said it would all go away, then a year being referred to the hospital and another year being bounced gently between orthopaedics and rheumatology. It is good that this is not happening to you and you stand a good chance of a far better outcome now that things are moving. You have the pain duller thing sorted, now let's get the rest of it done!

Tony? Start lacing. Swift boot up backside required, mate.

Right, I have done my alendronic acid, let the six hours of nausea begin! To paraphrase Greg Wallace: life doesn't get better than this! DD

(If I have omitted anyone I apologise - :oops: )

stickywicket

DD, you take the meds because they make a difference. Much of the time they don’t seem to make enough of a difference and sometimes (eg when you get an infection just as you’re (wo)manfully trying to cut down anyway, the difference seems very marginal. And then you start to wonder why you’re bothering at all. And because, normally, you just ignore as much of the pain as possible, on these occasions when you can’t ignore it it somehow seems greater because you’re having to acknowledge not just the new bit but all the old bits as well that you usually push onto the back burner.

You can’t fight this thing. It always wins. You’re sharing a body with it and somehow or other you have to formulate a working relationship. Work out the dimensions of your captivity and then work out what freedoms you have. Enjoy them as much as possible. But, when a sore throat – or somesuch – gives it the upper hand temporarily just go with the flow. Don’t fight it. Don’t try to prove, either to ‘it’ or to yourself that you’re as good as ever. Don’t ask too much of yourself. Just tread water for a while. It’s not giving in: it’s gathering strength.

I don’t supposed you’ve experienced a sudden, overnight reversal of fortune (In a parallel universe maybe) but at least this episode must have shown you, if you weren’t already aware, how many people on these forums hold you in so much, well-deserved affection. We all wish you well.

alarkra

Hey DD,

So sorry to hear that you are constantly battling to feel any benefits to the meds. It's unfair that your meds can't undo the damage done by the arthritis. How are you feeling today after the acid thingo you have had to take today? It's rotten that you don't seem to have any relief at all at the moment. I'm not all that great myself, but I keep a reality check by remembering that I'm not as bad off as many on here and that I'm fortunate enough that I'm getting sorted out at the moment...

I'm extremely anxious at the moment. I'm seeing The Man tomorrow and am going to have my fingers crossed that he'll switch me to anti-TNFs as the cocktail of meds I'm on atm really haven't been much help and I have certainly slipped backwards since I saw him in November... I'm going in with fighting talk - I have so much I want to do, I don't want to bow down to the orders of RA, I want it to come second in my life, rather than dictate it. If I can get a chance at trying anti-TNFs then I can at least have the option to see if they work for me... we'll see. If I get turned down, then I don't know what I'll do, it doesn't bare thinking about at the moment... I need to try something else, this can't be how it's going to be for the rest of my life, I refuse to accept that.

I'm sad to hear that there are many people on here who have advanced arthritis and have been put onto the more effective meds too late to undo the damage... :sad:

I hope that you are all having a lovely Sunday so far, sticking two fingers up at arthur and having some fun. ((((HUGS)))) :P xx

***OH, and DD, I forgot to say the most important thing of all. You have got to be one of the most strong people I have come across who has arthur, you continue to fight on, which inspires me to do the same. Don't let it bring you down (((DD))).***

dreamdaisy

Hi alarkra, it's lovely to hear from you! Get thee on the anti TNFs soon, is my advice. I am utterly convinced I've had them far too late on for them to make any substantial difference. I fannied around with meth and sulph and lef and cyclo while the arthritis just shrieked with laughter and got down and dirty with my joints. As I said earlier my hospital now puts people on them after 6 months and that can onkly be a good thing. This pernicious disease has to be hit and hit hard - I know that for some the meth is good, the sulph does help, the lef is a wonder etc etc etc but for others they ain't good enough, either alone or in various combinations. anti TNFs are not all that wonderful either (well, not in my experience, this is my third and final one) inasmuch as they don't cure, but they certainly can give very good and high levels of relief, and that is all anyone wants, surely. Stick to your guns girl, you are far too young to have your life messed up by this rubbish. Let us know how you get on, please.

sticky? Trenchant and pertinent and spot on. I like your way with words. I am pleased to report that I am feeling brighter, the throat is OK, and I can feel a totter round M&S coming on, I need to get out of this damned house for a blast of germ-infested 'fresh' air. Then it's more rubgy - allez les bleus! I shall puff a celebratory Gitanes if they win.

Beggur. It's raining. Ho hum, can't have everything I suppose, and M&S does have a roof. DD

ratface

Hi DD,

Hope the throat and cough are improving. It's probably something doing the rounds and unfortunately we're more easily invaded!

The cut down on steroids won't be helping how you feel either, it takes time for your body to adjust to the reduction in meds. Here's hoping you will quickly see some improvement.

Enjoy the outing to M & S - a bit of retail therapy is good (and also a change of scenery will help lift your spirits)

Love Rat Face xxxx

barbara12

Hi DD, I hope today is a little better for you, hang in there, we are always here when you want to let off steam.
Love and some more hugs ((((())))
Barbara xx

traluvie

Morning DD...

How you feeling this morn??
Hope you feeling a bit better...
Your right with your reply yesterday.. i am one of the lucky ones who has been dealt with quickly and efficiently and hopefully because of that iwon't have to suffer like you and many others ...
I really Hope you get some better comfort soon.. you deserve some peace..
I can help tony with his laces if need be.. can give you a quicker boot up the jacksy...

dreamdaisy

Hi traluvie, I think I'm on the up again. Retail therapy, yum yum. Bought clothes I don't really need with money I don't really have and I feel so much better! Two gorgeous delphinuim blue layering tops (identical) and a wonderful, long, deep blue linen skirt, oh happiness is. We are going to friends for dinner next Saturday so the outfit is done. Now I remember why I take the meds - my walking is a little better (still on the sticks yes, but moving with a little more ease) and when I got home I unthinkingly wiped my feet on the mat (I can do that for eight days out of the fourteen) so that's a good thing too. I am now off to undo all that goodness by ironing Mr DD's shirts, all twelve of them (that'll teach me to take time off from chores).

Thank you, everyone, for your help and support over the past day (with this thread) and the past months - you all make life a damn sight easier to live. I am an extraordinarily lucky woman to have met you all. DD

traluvie

Nice to hear you are on the up..
Amazing what a bit of retail therapy does eh??
You just make sure you don't over do it by doing Mr DD's shirts.. pace yourself..
Enjoy the rest of your day... and please take it easy ...

tkachev

dreamdaisy wrote:

Oh nanarose , if the fat woman doesn't pedal she falls off and what an unholy mess that would be! For a start she can't flaming well get up unless there is the modern equivalent of Geoff Capes lurking handily nearby. I don't often get fed up but it's lovely to know that when I cannot keep the smiley mask firmly in place I can sound off and people will understand. As for the meth, well I am on 15 ml - whether increasing that would help or not I don't know. It rarely troubles me side-effect wise, and I know I am very fortunate in that. It's another thing to consider, I suppose. As for posting - thank you for answering and I am certain it won't jinx you! What else are you on - sulph etc? That does keep the P bit at bay, for the most part, for me - my last bout of P was on my soles but that has cleared (and has been gone for a while now, so I know that is another reason to be grateful to the meds).

tkachev - oh, joint replacement, what a pipedream. Two knees, two ankles and two sacro-iliac joints would go down very, very well and I wouldn't sniff at two elbows either. I remember that my last Xrays on my knees showed perfect bones but lovely white bags of fluid here there and everywhere - gawd knows what they look like now, probably the same! I think the damage is around the joints after years of unchecked synovial effusion, especially around the left knee. The right knee and ankles should be better - hopefully the meds have had a slowing effect on them but I don't really know. My ankles are the killers at the moment, they are the most painful but try as I might I cannot avoid walking on them! And so the vicious circle revolves . . . . . DD

Oh lawd DD.

E x

julie47

Hi DD
Glad you are feeling much better and I am so sure that the therapy (shopping) did you a world of good. The clothes sound lovely and you will look a bobby dazzler next week when you meet your friends.
You will have sailed through mr dd's shirts as you will have still been on a high.
Have a nice evening
Take care
Juliepf x

psyart

Hi DD ~ have just read this post and need to say that you are an amazing woman ~ llike Cris ~ you fight, shout, are honest about how you feel, admit when you are down and then bounce back up with humor and grit :!: You are always there for anyone ~ and i meant anyone who writes on this site ~ you are there with honest words, wise words, support, laughter, and lately, loads of hugs for ones who need it :!:

you are one of the people I admire, you have helped me with honest words and support and for that i will always be grateful ~ i have been unable to write for a while ~ too much going on in the head and well as with my health ~ 3 things i was determined to sort this year ~ my job, my uni life and my marriage :!: But I think about you, Cris, wonky legs and others every day :oops: I wonder how you all manage to cope and i feel ashamed that i feel i am not coping :!:

I'm glad you have managed to pick yourself up and you are feeling better ~ lets hope it lasts for a while :!:

take care my lovely ~ louise xx

dreamdaisy

psyart, it's lovely to hear from you, I am sorry that things are not going too well but you know we are here to dish out sympathy, hugs, virtual cuppas and (from me) boots up backsides. That sounds like the last thing you need - everyone has different limits, everyone reaches different limits at different times, ie one day you can handle something the next that same something is un-manageable. We understand that - don't forget we are here.

stickywicket, your words have been reverberating round my skull all night - I must admit they made a change from alphabet lists and it was, actually, quite a good night as only one hand towel was required for mopping duties. (Count your blessings, DD, no matter how sad they are.) Right, you said '...work out the dimensions of your captivity and then work out the freedom you have.' I was seeing it as all captivity, when actually it isn't. I think the level of captivity rises and falls (depending upon the success of the various meds in controlling the beast within) but there are times when it does all become so overwhelming that one loses sight of that fundamental truth. I hadn't seen it for some while, actually, so thank you for the pertinent reminder.

You were also quite right when you said the meds don't make enough of a difference - that is what I am railing against, I suppose. It's time I grew up, yes? I am nearly 52, not the equivalent of 5 minus 2. Disappointment is the stuff of life - learning to handle that with grace, humour and style is what life is about. Everyone can handle happiness and contentment which is why they are apparently rare commodities. They are not, it's just that sometimes we cannot see them. DD

julie47

Morning Dd

Keep pedalling you are doing fine

Juliepf x

williamlargs

My friend DD there are no words I can think of other than I am thinking of you and hope you are enjoying some relief.

The best thing I can do is continue to enjoy my current good health to the best of my ability and constantly remember how lucky I am.

Good luck pal

x

tillytop

Hey DD

You have had some very wise words from other peeps and I am a tad lacking in wisdom, but just to say I DO understand. I think it is the sheer and utter relentlessness which makes this so hard to bear.

Thinking of you.

Lots love Tilly xxx

dreamdaisy

You are indeed one of the lucky ones, williamlargs, and I really mean this: long may that continue. Thank you for thinking of me, it does help to know that people do. DD

dreamdaisy

Hello tillytop! You've put your pom-poms down for the time being then? I know you know about the relentlessness and yes, that is the most tiring feature of it all. Even the good days are not much to write home about. I think I have currently lost the knack of spotting the good days, I am sure it will come back. You know what a certain Mr Amiss had to say to a certain Mr Larkin (I think) - it's all bum, and it is, but it will pass, all things do. DD

stickywicket

dreamdaisy wrote:

It's time I grew up, yes?

Don't be ridiculous. I need someone of my own mental age range.

barbara12

Hi DD
Im so glad you enjoyed your retail therapy, good on you....now you start planning your next one.
Love
Barbara x

skezier

Hi DD,

Well i don't know why you take your ones but I take mine on the vague hope they might just help

Hey retail therapy... not really my thing though I did wonder into a shop late and it was nearly empty..... kinda get it but not my thing unless music downloads count.....

Boy have I got a good one..... about 5 hours of solid trace! Wow ain't life good with the little bits it gives us ((((( ))))) and its no good running they have legs, and love(not said lightly either!) Cris xx

speedalong

Sounds like you have worked it out DD, meds aren't great, but a difference can be noticed if they aren't taken - so they clearly do something - even though we wish it were more. You'd have fallen off that unicycle years ago if you weren't taking them.

Glad the retail therapy worked for you.

Cris - S and I tend to visit shops near to closing too, and we too rely a lot on online shopping. How did we cope before online shopping?!! :roll:

Speedy

skezier

Hi Speedy,

Hope S is feeling so much better now?

24 hrs place... almost empty and I kinda got the retail thing but will stick to the on line music downloads as my pure indulgence... cus I am supposed to be on a diet Otherwise we have some real pure indulgence stuff this way (((( )))) and hopes your doing ok? Cris xx

speedalong

Hi Cris, (sorry DD to gate crash,)

S is feeling much better and has finally got rid of the flu and dreadful cough. Just left with a blocked (not runny) nose. Which is annoying him at night ... but he is more himself during the day, thanks.

Speedy

skezier

Sorry DD more hi-jack xx

hi Speedy,

Glad he is feeling a lot better and I wonder if he would sit and inhale either pure or something with eucalyptus i it for an bit before he goes to bed?

I also have a lot of colds... well i used to have now I just one endless one.. but it does my sinuses as well....

I find (and its horrible) inhaling the hot water up the nose helps.... he has to be careful though as he doesn't want to breath it down to his lungs....

Its horrible but it does help.....

Really hope it will all stop for him soon and leaving you another ((( ))) and a make S better draft. Cris xx

Oh and in the rigfht topic :oops: