I've got that 'night before appointment' dread ......

Wonkylegs

I'm off to see my consultant in the morning.

Need to ask for (beg ) more meds, and have begun to realise that the rheumy nurse was right to suggest I might need the anti-TNF stuff. Scary though.

Thing is .... my bloods have gone back into the 'normal' range and well my consultant has been telling me I've been 'doing well' (in his eyes only :roll: ) for years when they have been way higher.

so .... I'm dreading the appointment but at the same time I am clear that I can't put up with things staying as they are cos my bloods may be 'normal' but life for me is not!!!

Hubby bless him saw how I was feeling tonight and said he'd miss work and come with me (he has done that before and the consultant talked to him not me:roll: ) ...... but that would make me more worried cos it's his busy time at work and he is pushed anyway with having not been in on Monday. And I'd feel worse if we had to sit for hours waiting like I usually do. But it was so nice that he offered.

So plan b is that I'll give the consultant hubbys work direct line if he gets stroppy with me and suggests that I'm fine as I am :shock: and tell him to listen to how life really is at home

Now I wonder if I'll be brave enough to use plan b if I feel I need to :? I feel better just for knowing I have a plan though

let you know tomorrow

lindalegs

BE brave Wonk ...at least he'll talk directly to you if hubby's not there. Could you ask a friend to go even at this late stage?

Try to tell him how you really feel even if your bloods do say otherwise.

I shall hold your hand in a cyber way to give you courage.

This time tomorrow and it'll all be over.

Good luck

Luv Legs XX

dorcas

Hi wonky!

It's a horrible feeling waiting to see rheummy when you're not too sure what's going to be said and worrying that you won't get the outcome you're hoping for.:roll: so......

Start by telling him that although your blood results look ok just now, that you have such pain and difficulties that it is interfering with your daily life. Also, that you believe that your meds are not keeping arther in check!

I've always found that if I've kind of rehearsed what I want to say that it helps keep the consultation focussed on where I want it to be. Also that rheummys take notice if you are prepared to fight your corner.

Write it all down and hand it to him if necessary.....it works

Hope it goes well for you wonky. :!: love and hugs.

Iris x

speedalong

Good luck, hope appointment goes well.

Speedalong

dreamdaisy

Take notes with you (which he can read) and munch a couple of brave pills (Smarties to everyone else). We're all there with you - good luck. Dreamdaisy

valval

with you all the way it not all in the bloods and he must know this so tell him how your quality of life is affected and how bad you are still feeling good luck fingers crossed val ps we are in your handbag so coming with you

elnafinn

Just to wish you all the best for today, Wonky. As you are dreading it so much, it probably will not be a bad as you fear and I hope that only good comes out of your appointment.

Chin up,

Hugs
Elna x

maria09

Good luck with ur rheumy i agree take notes also make sure you have questions written down because i always forget to ask then when i leave i always think why didnt i ask that! Just becaure your bloods are ok doesnt mean you are! He should know that! Best wishes Maria x

skezier

Hi Wonky,

I'm sorry I was very unwell last night and missed this...... hope I have caught you but thinking of you anyway.

Its hard when you keep being told how well you are and your feel awful....... I go alone to all mine so don't know about them taking to the person with rather than you thing but you realize we shall be in there with you?

I hope it goes ok, just stay calm and make him listen to you as you haven't been feeling well for a bit and he can't go on your blood as they just say levels not if your feeling bad! Sending you a ((((( ))))) an he is on his way to bounce you and be on hand to bark if you need it Luv and thinning of you, Cris xx

theresa4

HI
Hope you havent already gone and have a few minutes to type or write all the problems you are having daily (EVERYTHING) and hand it to your rheumy when you get there like others have already said. I found this effective as by the time Ive sat and waited I am too stressed, in pain and sometimes teary by the time I get to see him. It was really good as things I dont like saying out loud or may upset me were there for him to see he was very good and took on board the note and added it to my notes.
Good luck today

Love Theresa x

bertyboy

i might be a bit late and you have gone but hope all goes well and you come home with things a little clearer xxxxxxxxxxxxxxxxxxxxxxxxxxxx

frogmorton

Hi Wonky

I wonder how you got on???

Sorry I didnt see this last niggt as I would have wished you luck.

I hope all went well and you didnt need to resort to plan B.....

Hey maybe B could move to C...

plan B for me would be bawling my eyes out (not pretend)

Love

Toni xx

dreamdaisy

Hello Wonky, it's 1.10pm. How did it go? Are you OK? Did he listen? Let us know what happened when you can. Dreamdaisy

barbara12

Hi Wonky
I do hope everything went well for you today, I usually find the more nervous I am the better the appointment goes.
Lots of hugs (((((())))) for when you get home.
Barbaraxx

skezier

Hi Wonky,

Hope your back and it all went well? ((((( ))))) and slurps Cris xx

Wonkylegs

HI Everyone,

thank you so much all of you - it means so much ..... and i did have to smile cos you all said what I know I've said to you on other occasions, but sometimes when it's for ourselves it just goes out of our heads doesn't it? :roll: :roll:

So ..... this was my day so far ..... highs and lows in abundance!

up at silly o'clock to take pain killers and have breakfast, walk the dog (birds were warbling beautifully ) then back to get changed and sort myself out for MTX injection with the GP nurse at 9.20. She is really good and sent me on my way smiling.

Collect repeat prescription from chemist ..... got to go back for half of is tomorrow as out of stock :roll: :roll:

Drive a few minutes to hospital, got a parking space and the machine was not accepting coins

Arrived at reception at 10.15 for a 10.35 appt to be greeted with a whispered 'do you know he's retiring in July?' (receptionist knows me well by now ) and I braced myself to ask to see himself rather than a registrar.

Waiting room crowded :shock: waiting time for my clinic not up on board but is usually a while. 10 mins later they announce to the gathered masses that there is no registrar and a full clinic, so waiting time is 40 mins. :roll: groans all round.

Waiting time rises to 60 mins :shock: :roll: ........ then 90 mins :shock: :shock: :roll: .

Finally got in to see him at 12 noon ..... had practiced plenty in the meantime so said my piece and well it wasn't so bad as you all predicted, although he still thinks it is great to see me so well :shock: :shock: :shock: :x

He did agree to my trying an Anti-TNF but would only agree to the infusion, because I don't do my own MTX injection so in his eyes it wasn't worth the organising of the others if I was not going to do it myself :? (the rheumy nurse may think differently .... we will see)

The thumb that my GP was so concerned about was dismissed as 'a bit of OA that's all' :x :x :x & then he gave me a form for an appointment in 4 months and that was that. Only realised as I left that he hadn't even mentioned retiring !!

finally got back to car at 12.15 & rang hubby to stand him down .... he is not happy that I've been told I have to have the infusion, cos that will be a whole day at a time instead of just an injection, but we'll see what happens in the meantime.

so I have rung the rheumy nurse and left a message and well it is a wait and see until I hear from them and I really don't know what to think. :shock: :?

I think I was more assertive (didn't need the tears though as we'd had a jolly good laugh in the waiting room and well knowing that I don't have to see him again was a help ) sad cos he knows his stuff but isn't good with people .......... and I know it isn't just me he frustrates.

so thank you all so much & sorry this has turned into an essay :oops:

hugs
Wonky xxx

dorcas

Hi wonky

what a day! you done good girl

( apart from all that 'hanging about' which must have been frustrating :roll: )

I know you're a bit disappointed with having the anti tnf by infusion (infliximab is it?) as you will be in for a full day at a time.....but the good thing is that once you're up an running on the drug the appointments are then 8 weeks apart.!

I'm waiting to start infliximab too and was told that you have the first infusion..then 2wks later the second...then 6wks after that the third and that's you on the correct dose. Infusions are then every 8weeks ..........and at least you won't have to jab yourself.

glad you didn't have to resort to plan B after all....and you're right of course the advice we peeps gave is the advice you would have given us commin right back at ya!

love & (((hugs)))

Iris x

dreamdaisy

I'm glad it all went well - and well done you.

I had infliximab in 2004 and it was a piece of cake. In and out in under two hours. The first one may take a little longer 'cos they like you to hang around a while in case of any reactions but after that it is quite quick. Well, that's how my hospital did it and still does it. I loved it. I just sat there in an NHS electric recliner, canula in the back of my hand, and read or listened to my MP3 or went to sleep. No pain, no discomfort, just a chance to chill out for a while. Smashing. DD

Wonkylegs

thank you both .... you made me cry when I read your posts because they were both so positive.

thank you!

hubby has gone to chinese on way home so no cooking for tea and then I'll have an early night and then I am sure I will be happier tomorrow

thanks again
hugs
WOnky xxxxx

bertyboy

if i could jump up and down for you i would do pleased you didnt have the ordeal you thought you might enjoy your meal xxxxxxx

woodbon

Hi, So glad for you. An infusion sounds a bit harsh, an injection only takes a nurse 5 mins at the most. Maybe the nurse can sort it for you. I would have thought its more trouble for the hospital than an injection!!! Still, what do I know???

Love Sue

skezier

Hi Wonky,

A ((( ))) an an apology for being late.....

When I have my drip I meet a few people on infusions of the ra thing (I can't remember what they are called :oops: ) and everyone of them are ok with the infusion and all of them say it helps them so good luck and shame you can't be in the same ward as me for mine eh? Another ((())) and he sends obligatory slurps but I shouldn't accept them today as he has been eating things he shouldn't this morn...... Luv Cris xx

dolittle

Taken it off - it was cluttering up the thread

frogmorton

Hiya Wonky

Well I reckon - all things considered - you did rather well there.

Good job girl

May well be a good thing he is retiring - you might get a good replacement.

Nice to have a laugh in the waiting room isnt it?

Do let us knwo how it goes

LOve

Toni xx

dreamdaisy

There are a variety of anti TNF drugs and as far as I know the only one in infusion form is infliximab, and only because it's the only one I've experienced that has been delivered that way - the others I've tried have been self-injected. Didn't write that very well, did I? Hope you got my drift. DD