Confused and sore
LignumVitae
Member Posts: 1,972
Right so I did the steroid injection and that didn't work and I tried the oral steroids and to my humble mind, they've done nothing. Resting up has helped a bit but at the same time, the back log of things that need doing with the girls, house and work that others (Mr LV) don't seem to see means that the resting is having to be reduced and can not be a long term option.
Yesterday I saw my nurse who listened, brought in my consultant to have a poke and prod. She felt my joints may be a bit less swollen so the steroids may have done something and that if i could sleep I might do better (but I wake up sore and then can't sleep because my joints hurt so that's a circle I'm struggling to square). So now I'm to finish the steroids and then go a few weeks with just the meth and Celebrex to see what happens.
Im trying very hard to understand why that's the best thing to do and not to feel high and dry and like they've given up on me. I'm also trying not to swear very loud and very often (and failing so I can imagine what the girls early vocabulary may include).
Yesterday I saw my nurse who listened, brought in my consultant to have a poke and prod. She felt my joints may be a bit less swollen so the steroids may have done something and that if i could sleep I might do better (but I wake up sore and then can't sleep because my joints hurt so that's a circle I'm struggling to square). So now I'm to finish the steroids and then go a few weeks with just the meth and Celebrex to see what happens.
Im trying very hard to understand why that's the best thing to do and not to feel high and dry and like they've given up on me. I'm also trying not to swear very loud and very often (and failing so I can imagine what the girls early vocabulary may include).
Hey little fighter, things will get brighter
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Comments
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Oh LV, my heart goes out to you. I am in a similar boat but without the RA and two small children. I have no wise words because I cannot think what to say but I can offer some rather sweaty hugs. ((( ))) DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Hugs to all. Mig0
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So very sorry to hear this LV, this wasn't the plan at all was it?!!
Although it does sound (on the face of it) as though your Rheumy has left you high and dry, could it be she thinks the steroids are keeping you awake? I know they do me, and if they're not really helping it may be as well to drop them. Having said that, it would have been nice to have been offered something else to help!
I wish I could offer a solution, all I can suggest is keep badgering them, I know you shouldn't need to but what else is there to do?
Sorry I'm no help at all ((((()))))
Take care
Numpty0 -
((((())))) I seem to have given out my entire annual supply of hugs this week but sometimes needs must even for a Yorkie. It's been a tough time for many on here, especially us auto-immuners. (I'm dripping as I type.)
I do sincerely hope your team have a plan for you. It's most uncharacteristic of you not to question them about what it might be and I can only see that as a symptom of your current pain levels. I wonder if they want you off the steroids before they can try something else. That would be my most optimistic musing.
Most housework - I discovered when mine were young - is optional. In fact, in this weather, for the little ones, even clothes are optional though it might be better for neighbourhood relations if you and Mr LV covered up the essentials.
As for language - a varied vocabulary is good so remember to vary it. I became adept at muliti-lingual swearing.
I've no words of wisdom, alas. Keep plodding on. Your two little lasses will keep you going.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Oh LV I have no words for you I'm afraid just some of these ((((()))))xxxxxx here's hoping for better days......................Marie xxSmile 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 Smiles0 -
LV I am so sorry your are still struggling, the feeling of being left high and dry is awful, like nobodys cares and you don't t know which way to turn.
men never see whats wants doing in the house, I had to stop being so house proud, but I am getting used and so his my OH... :?
With 2 children it must be so hard, I think you need to have another talk with your rhuemy, and get over how you are suffering, when you think the amount of people they see you have to stand outI wish icould help more, but I do hope you get some relefe very soon..(((()))) xxLove
Barbara0 -
Just wanted to add my best wishes and a few ((())), LV. I hope that things improve for you.
Meg0 -
Hello again, LV. I'm thinking of you. ((()))If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Me too hope things are getting a bit easier for you (((())))......................Marie xxSmile 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 Smiles0 -
Hello
Thank you so much everybody. Your support is probably the thing holding me together and keeping going! My feet spent last night doing balloon impressions and my hands are less than impressed with most things asked of them.
I think I was a bit over faced by a Rheumy and a nurse and it all felt a bit cloak and dagger and like they just didn't have any options if the steroids didn't work - like maybe it as my fault or I was imagining it and all
I needed was to sleep which would be nice but if sleep could fix a flare I'm sure none of us would take any drugs.
I'm not house proud (ask my mum) - children, Mr LVs size 12s, dogs and cat dont permit me to be but Mr LV falls into the category of thinking that by emptying a bin the entire house work has been completed and that tends not to be the case! His idea of 'let me sort dinner' tends to me those nice people at the take away sorting dinner so in the end, in the interests of waistlines and nutrients I tend to end up botching something together.
I guess my option is to wait it out and hope that things either settle or by the end of August the Rheumy has come up with a more helpful way forward. At least I have all you wonderful people and your experience and understanding - not sure where I'd be without you all right now. From the bottom of my heart, thank you xxHey little fighter, things will get brighter0 -
I don't think sleep ever fixed a flare but I do think more sleep - and rest - would probably help. I've now exhausted all my fou nt of wisdom so I'll let someone else deal with how you're supposed to manage that with two very unarthritic little toddlers in tow.
Mr SW took some years to learn basic cooking skills. I distinctly recall my - then - 11 year old elder son, when told I was going in for a new knee, exclaim "Not another week of fish and chips!" (Actually, it was three weeks back then and, by the time I got home, there was a jobs rota pinned on the kitchen wall )
One tip. W**tr*s* own ready meals don't contain what my Mum used to call 'muck 'n rubbish'. One per week would do no harm.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Sticky, that is a BRILLIANT idea, thank you! I will get that sorted next weekend and spend this week dreaming about easy meals next week. I have managed to get the girls devoted to books which means I know quite a few by heart but you can loll about reading books and doing interesting voices and board books are quite easy to turn the pages on. At the end of this flare I may wish to never go on a bear hunt again or hear what the Gruffalo has to say about the deep dark wood but I imagine I will not be the one to decide that!Hey little fighter, things will get brighter0
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Hi LV..
Wish I could help more. . I have diazapam to fall back on when things are chronic and sleep is bit of a myth. . My GP gives me them when I need them and knows full well I won't abuse them. They are not sleeping tablets per say more of a helping hand on the way to nod.
I have used them for years every now and then. Maybe talk to the doc about something similar?
Best wishes and YBH'S aplenty xxMe-Tony
Ra-1996 -2013 RIP...
Cleo - 1996 to 2011. RIP0 -
LignumVitae wrote:you can loll about reading books and doing interesting voices and board books are quite easy to turn the pages on. At the end of this flare I may wish to never go on a bear hunt again or hear what the Gruffalo has to say about the deep dark wood but I imagine I will not be the one to decide that!
Oh the Three Blinking Billy oats Gruff :roll: My pain levels rise at the mere mention of them. And the main culprit can no longer remember being so fond of them.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Right, I have planned a trip for ready meals at the weekend (those suggested), I have got some codeine in to see me through the night (thanks Tony, hadn't thought of taking a little extra to get the sleep happening - other than a pint of gin) and I went on that online retail superstore this morning and cleared them out of secondhand 1p children's books by the authors who get thrown at me so often. I may as well find a way to batten down the hatches through this flarey storm! Thank you for your suggestions, you inspired me into actionHey little fighter, things will get brighter0
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I hope things become easier for ya mi dear..
YBHs for you and the nippers xxxMe-Tony
Ra-1996 -2013 RIP...
Cleo - 1996 to 2011. RIP0 -
I just thought you might be able to find a use for these ((()))If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Thank you, I need all the hugs I can get today. I put Tegen down at 8.15 sweet and silent, by 9.30 she was sweaty, wheezy and very upset. Guess who spent the night up with a baby and guess who spent the night snoring away?! It probably means another tooth will sprout in the next few day and she is fine this morning (and off for a day with my Mum while I work which feels like a rest) but there goes another night's sleep out of the window and you can guess how that has left me feeling. Ah well, one day this will all be over. Thanks for the support, it's holding bit of me together that feel like they have fallen apart xxHey little fighter, things will get brighter0
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LignumVitae wrote:Guess who spent the night up with a baby and guess who spent the night snoring away?!
Ah yes! When bathed and smelling sweet and smiling they are their children: when screaming and smelly in the night they are yours. The male ear is finely tuned to not pick up the pitch of a screaming baby. Just occasionally, enough will register for them to mumble "(S)he's crying" before snoring again.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hope you manage to get some sleep tonight LV, hope a few more of these help to keep you going ((((()))))xxxxxSmile 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 Smiles0 -
I just had a nights sleep with only one get up to a baby thanks to codeine. Tony thank you for that idea. I feel all woozy now like I always do once my body has finally sleptHey little fighter, things will get brighter0
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Glad you slept but please be careful and not to take them often. .Me-Tony
Ra-1996 -2013 RIP...
Cleo - 1996 to 2011. RIP0
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