Pocket duties please

Slosh

Hi
Tomorrow it's time for blood tests and then Thursday afternoon I have a rheumy appointment. I've been on steroids since September for what has been called an "undiagnosed inflammatory pathology ", so it's to see what my markers are like now, plan next steps etc.

I think it will most likely be to taper of the steroids and confirm her earlier hypothesis of chronic pain syndrome.

Cream tea after for any pocket dwellers

[Deleted User]

Hi Slosh,

Count us in - Chris is on tomorrow so she will be there for the bloods, I'll pop in on Thursday

Don't forget to write down any questions you need to ask - put it in your pocket so we can all read it on the way there and nudge you if you need any reminders!

Take care
Yvonne x

[Deleted User]

Morning Slosh
I'm with you for pocket duties for your blood test and also for Thursday.
Good luck for both
ChrisK

dreamdaisy

You can count me in, I'm finally up and about and grateful for any outing . The blood results will be of great interest, yes? DD

frogmorton

Count me in too Slosh and cream tea?!! GREAT incentive

Love

Toni xx

Slosh

Thanks everyone. Had my bloods done, must be used to it now as I didn't even realise she had started.

It's not until 3.30 on Thursday and I'm quite pleased (although parking could be tricky), as it will be at the end of my most full on day at work in terms of teaching and I will have had an after school meeting on the Wednesday so I will not be at my best.

stickywicket

Slosh wrote:

Thanks everyone. Had my bloods done, must be used to it now as I didn't even realise she had started.

I think that's partly due to the skill of the phlebotomist though some of us do have challenging veins.

Best of luck for tomorrow, Slosh.

Slosh

Thanks Sticky.

dreamdaisy

I will be there in spirit tomorrow, please let us know how you get on as and when you can. DD

Starburst

Hope I've sneaked into your pocket in time. Good luck, hope it goes well.

[Deleted User]

Hi Slosh
reporting for pocket duty, hope it goes well today
Sharon

Slosh

Thanks all - it's not until 3.30 so plenty of time. Really tough day pain wise today - keep telling myself that's a good thing! Surprisingly anxious about this appointment.

One pupil to do then an early exit from school.

dibdab

Just in time to hop in your pocket I hope......keep calm, and at least they'll see what you're struggling with first hand if it's a bad day. :oops: . Hope all goes well.

Deb xx

frogmorton

Any news yet?

:?

dreamdaisy

I've been thinking of you. ((( ))) DD

Slosh

Sorry all, I got in, messaged my daughter and went to bed!

As I expected really, I don't have polymylegia rheumatica as the steroids did not get rid of the pain so I have to slowly decrease those now, and while my inflammatory markers are still slightly up she is not concerned.

I was really bad by the time I saw her, to the point I could hardly string a sentence together and I was really honest. I even admitted that I've been using my rollator more at work due to how often my shoulders have been so painful I couldn't bear to use my crutches and she said that was very sensible.

She checked my past MRIs, asked me about my surgery/outcomes etc and said she felt I needed a referral to the Pain Management Team as
I "shouldn't have to go on suffering such pain".
She will try and do it but if she's not allowed will write to my GP, and in the meantime will send me for a MRI to check my neck again and as the Pain Clinic might want one and it will help to speed things up.

She also told me not to go into work tomorrow as I mustn't push myself.

I see her in about 4 months time. Really shattered now, taking it all in and being good about work.

Oh, and my "new" diagnosis is Chronic pain syndrome, most of all though after being dismissed by orths when I talked about my pain it's a relief that someone other than my GP is taking this seriously.

Thanks all for your support

frogmorton

Aww Slosh I am so sorry you feel so rough

I really hope you have been 'good' and taken today off?

What a caring consultant you saw

Chronic pain sounds about right from what you say. I hope he is able to refer you to the pan clinic directly - I imagine it will have more clout if he can.

You take care today and over the weekend ((()))

Love

Toni xx

Slosh

I have been good and I'm at home snuggled in my dressing gown, fleece blanket. She is very caring and I don't know if this is true of all rheumy consultants but she does give you time in her appointments and there is that feeling of continuity as on each of my 4 appointments I have seen her. She's also very efficient when it comes to letters so even if the referral needs to go through my GP with her letter as evidence I won't have to wait long.

Thanks for your support

frogmorton

Good girl!

She remembers you? That is a very good rheumatologist and it really sounds as though she cares.

We do too.

Rest up now

Love

Toni xxx

dreamdaisy

I think any hospital appointment can take it out of us, there is the stress of getting there, parking and then waiting none, of which are conducive to feeling rested and refreshed before you go in. I think the continuity of care you are receiving is very good, you have an excellent GP and your rheumatologist sounds to be very caring too. I am pleased you are not in work today and you were very wise to mention that you are using your rollator more and more, this is the kind of practical information our docs need so they get a better all-round picture of us as people dealing with our conditions.

Keep resting, keep warm and make a fuss of yourself, you deserve it. DD

Slosh

Thank you both. I must admit it has really taken it out of me and I feel like a very flat battery.
Still in my pjs

stickywicket

It was a tough day, Slosh, both physically and emotionally. Be gentle with yourself. You can't just bounce back from that.

I think, re-reading the thread, that this diagnosis was what you'd expected but maybe a corner of you hoped for something more treatable? The rheumatologist is hanging on to you though and that is very good.

For now, the SW Pain Clinic recommends rest, relaxation, easy food which require little prep but taste very good and a healthy dose of whatever you fancy to be taken at regular intervals over the weekend.

Slosh

As ever Sticky you hit the nail on the head, silly I know but if I'm honest part of me was hoping for a magic bullet/pill!

Being very good, taking it easy, and trying not to do too much/push myself but it's not easy, it's just what I do, and have done since my teenage years, push myself to do more, achieve more, do that bit extra and with schools being so target driven these days that tendancy in myself is reinforced at school.. It's strange but for some reason the message, although I've heard it before, has really hit home this time. Feeling down and generally sorry for myself.

Sorry

stickywicket

No need to apologise, Slosh. In fact I should be the one apologising for not seeing this earlier but I had a very busy weekend.

"Could try harder" is not ever going to be on your AC 'school' report, is it? And, unfortunately, we don't get time off from arthritis for good behaviour. It's here. It's for life but I can't take all our life, only change it, occasionally for the better.

I hope your weekend improved and you are feeling a little easier in yourself. If not, we are here. But please don't apologise

Slosh

Sorry for the delay in replying but I was having email problems yesterday. However I am pleased to report that I am getting back to my "normal", and my new mantra is "Don't push yourself, you mustn't push yourself". Not easy but...

How did you know about my school reports? With the exception of PE I always had "A" for effort from junior school on. My parents always said they didn't mind about grades as long as I got top grades for effort and despite my passing the 11+ they always said I wasn't academic which resulted in me trying my best to prove otherwise!

stickywicket

Slosh wrote:

With the exception of PE I always had "A" for effort from junior school on. My parents always said they didn't mind about grades as long as I got top grades for effort and despite my passing the 11+ they always said I wasn't academic which resulted in me trying my best to prove otherwise!

Maybe 'A' was for 'Awkward', Slosh