and the verdict of the Rheumy nurse is ......
Wonkylegs
Member Posts: 3,504
....... that the Infliximab infusion is working :eek: :eek:
....... that I'm definitely quitting the steroids on 15th October
....... that I'm not imagining the pain and fatigue :roll: :roll: :roll:
....... that I now have a diagnosis of Fibromyalgia
....... that there are things they can do to help me
....... that things will get worse before they get better :roll: :roll: :x
It's not the end of the world I know, but it feels like yet another load of hoops to jump through.
OH .... and I finally see the physio on Tuesday so as well as the Achilles Tendonitis getting sorted, I've to ask for a structured programme of exercise :shock:
Right .... will just go sit in a darkened room, cuddle the dog and have a cry, then I'll just have to get on with it all again ........ like we all just have to do eh?
hugs ((()))
Wonky
PS - please feel free to shout at me if I appear to be tottering on the edge of the pity pit ...... the fence is a tad wobbly just now, but I'll get there with the fabulous support there always is on here.
....... that I'm definitely quitting the steroids on 15th October
....... that I'm not imagining the pain and fatigue :roll: :roll: :roll:
....... that I now have a diagnosis of Fibromyalgia
....... that there are things they can do to help me
....... that things will get worse before they get better :roll: :roll: :x
It's not the end of the world I know, but it feels like yet another load of hoops to jump through.
OH .... and I finally see the physio on Tuesday so as well as the Achilles Tendonitis getting sorted, I've to ask for a structured programme of exercise :shock:
Right .... will just go sit in a darkened room, cuddle the dog and have a cry, then I'll just have to get on with it all again ........ like we all just have to do eh?
hugs ((()))
Wonky
PS - please feel free to shout at me if I appear to be tottering on the edge of the pity pit ...... the fence is a tad wobbly just now, but I'll get there with the fabulous support there always is on here.
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Comments
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Hi Wonkylegs,
Great news that the infliximab is working. I'm glad you can stop taking the steroids too.
It is not great to hear that things will get worse but the fab news is that things will get better, so let's focus on that bit.
We all wobble on the edge of the pity pit every now and again, that's why coming here is so great. We can wobble together but keep each other (more or less) upright.
Thinking of you, take care
Sarah xx0 -
Well I' very pleased for you for getting a diagnosis, for them acknowledging its not all in your head,but not sure why it needs to get worse before it gets better, that the infusion is working (hope you have noticed the improvement) and best of all they can do things to help you.
I guess it has all been too much so I will leave you to have a little cry and a cuddle with the dog. Don't forget to keep us all posted as soon as you feel able,
ElizabethNever be bullied into silence.
Never allow yourself to be made a victim.
Accept no ones definition of your life
Define yourself........
Harvey Fierstein0 -
Dear, dear, Wonky, do go and cuddle Littlelegs and have a cry. Better out than in and knowing you, you will bounce back again. I have had a few wobblies over the past weeks too and also one whilst in with the consultant, but heyho it shows that we are human and have feelings.
It has been one thing after another for a long time for you now. It seems like yet another steep hill to climb but I know you will get there and we are all here to hold your hand and help you go that further mile.
Love to you, you brave girl and fluffy hugs to wrap around you and Littlelegs this afternoon.
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
Hi wonky
I am pleased for you about the infliximab and the steroids that is great news.
Hopefully things won't get as bad as you imagine because as you say they are going to help you and we are all here to help keep you strong.
Sending you hugs ((()))
Love Juliepf x0 -
hi Wonky , i know you will come back bouncing after your cuddle with the famous Littlelegs , there is good stuff in your post , you have a diagnosis and the meds are helping ,and some can be got rid of ,with a bit of luck your physio will get you sorted for jumping through those new hoops , hugs and tissues for today xxI know i am a lady ,all life is a journey xx MAY xx0
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bertyboy wrote:hugs and tissues for today xx
I totally agree and tomorrow smiles and grit.
Hugs
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
I see absolutely nothing wrong with a quick dip in the shallow end of the POSP (pool of self-pity). This disease demands so much of us, takes so much from us and gives precious little in return. Things usually get worse before they get better, 'tis the way of stuff generally, but you know we are always here to help you get through it all. It does sound like a typical rheumatology 'curate's egg' appointment, but the brighter stuff is lurking, wonky: you will find it, I am sure of that. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Hi Wonks. I'm so glad that you are on meds that are working, have a diagnosis, you know you're not fruit loop, things will get better and you have little legs to cuddle
Our for legged friends probably have no idea how much they help us. I try not to tell Ra as it hours to his head :roll:
As I'm sure you know, we are here for those wobbly times, but here just as much for the better times...
Be strong, I'm sure you will and before you know it those hoops will be a distant memory.
Best wishes from me and fat lad.. Aka Ra.. Aka Great White Dope.
Me-Tony
Ra-1996 -2013 RIP...
Cleo - 1996 to 2011. RIP0 -
I'm pleased for you. It's ok to wobble cos we've gotcha.Sue (Cloud9)0
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Hi Wonky, Well you can cry,scream, wobble & cuddle little legs for as long as you like.
If it helps then do it. Tissues are here for you so are all these lovely people to help you through this horrible time.
You'll be bouncing again very soon but for now rest & be kind to yourself.
Im glad the treatments working for you & they can help with the Fibro too.
As you know i have Fibro too not nice but it can be treated.
Take care & sending loads of soft (((((()))))) debs0 -
Ah bless you Wonks .... its such a strange relief to get a proper diagnosis and things confirmed.
Very best wishes for you and that some improvement and pain relief comes your way. xxx0 -
Oh Wonky
I have tried 5 times with this blinking dongle....anyway I am on for the mo...you must sit and relax tonight...try not to be overawed with it all.....bit by bit you will get there...and we are all here for you , I hope now that you get the right treatment...and will soon see some improvement...sending you loads of hugs and love to get you through...((((()))) xxLove
Barbara0 -
Hi, The cry should do you the world of good - it does me! :sad:
Then look at the positive side - as I know you will, you always do and their are positive things in your message already! The durgs do work but you have another problem, but that can be helped.
Oh, I wish it was all good for your sake, but I know you'll soon find ways of coping with the not so good. Lots of love and thinking about you, love Sue xxx0 -
Oh dear-no wonder you're having a wobble, it's sometimes just a bit more than we can get our heads around. It's great that you've had lots of positive news- just be gentle with yourself for a while and let other folks support you.
Gentle hugs coming your way. Love Deb x0 -
Oh Wonky :sad:
not sure what on earth to say because some of that is such good news too.
Don't worry we won't let you disappear into Skezier's wallow-pit l promise.
Love and hugs
Toni xx0 -
thank you all so very much.
I must say that yesterday afternoon was possibly the worst I've been for a while, but as many of you know a good cry does sometimes help.
Neither of us slept much last night. Poor Mr Wonky has to live with this too - and knowing why it hurts doesn't help him much. He still feels helpless to make things better for me, and that hurts him as much as the RA & Fibro hurt me :sad:
But today hasn't been too bad. I've even managed to tell dad over the phone in a way that I hope has left him worrying only a little bit. I know that he'll never stop worrying, he's my dad, but I don't like to add to his worries - he doesn't cope well with my arthritis as it is, and he lives alone, so that can make things worse for him.
so .... little by little we'll get through this like everything else that has been thrown at us. I'd just hoped that we'd had our lot. Not that I'd wish this on anyone else. :roll:
hugs to you all and thanks again
WONky xx0 -
Wonky
Oh my dear, you well deserved a little sob there and I am sorry you are still having such a hard time with all this news to try and take in. I hope today is a little better for you. Do take care of yourself and I leave some famous and patented warm but gentle wonky hugs for you. ((( ))) They have helped so many of us in the past.
love always
Chris xx0 -
Hi there
It is good news that you finally have a diagnosis and that you know you are not imagining the pain, that's sometimes is the worse part. But I will say, you have every right to have a good wobble, and a good cry, blimey I would do. No point in keeping it all inside, doesn't do any good.
Just have a good relax and your mind will sort itself out.
I am thinking of you and sending you hugs of comfort.
karen xxKaren xx0 -
Ho Wonky, Do you remember the wobbly toys, with the round bottom! (not suggesting yours isround ), well the harder it got hit and wobbled it ALWAYS came upright and smiling, hang on in there (((()))) take care Linda0
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Hi Wonky
Well not sure what to say here but there is light between the black clouds so just head for the light. Little legs will be a good comfort and I'm sure she would hug you if she could whilst you had a cry. I hope you are soon feeling the benefits of your new treatment and getting back to your old self. We'll be there for you, hope this makes sense.
Love
Vonski x0 -
I am thinking of you, very much. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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hi wonky,
i am sorry your got hit with another thing, its not easy to just feel your collecting conditions and it also has some fear on it....
the thing is back along i knew i had the pa... or something very like it and when they confirmed it a friend told me i had had it a long time and had been coping just the same....
its better [or well could be] cus they have got you on some treatment for it and that may well help you so much.
little-legs said she was in her very best sweetest mummy comforting costume and if that don;t work she will morph into miss l legs and then you will get better.....
you hang in there and try not to worry cus your going to be ok. love hugs and the normal assortment of slobber and slurps ..... though rumo has it that might not be the dogs Cris xxxx0 -
Wonky, I’m sorry I’m late coming to this. I thought I’d replied earlier.
Before I forget again, good luck for Tuesday.
The jumping through hoops? Oh yes. No arthritic life is complete without a full set of hoops. I think they issue them on diagnosis now. Sometimes before.
The ‘pity pit’? If you fall in, and we all do, hang onto a bit of the fence & take it in with you to use as a ladder. (Am I making sense? Probably not.)If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hello wonky, I am still thinking of you. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Hi All,
Wonky needs a few positive vibes please.... she hasn't had a good couple of days and the sooner she is able to get on the ampi's the better .....
you all take care and Wonky says hi and thanks and we both leaving a bucket of hugs and a tanker of good day drafts. [[[]]] Cris xx0
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