Rheumatology app

julie47

Afternoon everyone
I hope that you are all having a reasonable day. Atleast sun is out here.
Just got back from driving myself to the rheumy app Normally oh comes with me but this hosp is easier to get to than the others i also use.
Well the appointment was ok, a student was present so I had a lot for him to take in.Twisted linbs, nodules up arms,head about to fall off and an amputee all to do with arthur. Hope he doesn't have nightmares tonight
Anyway my main concern was the neck and wanted to know what i will still be able to do after the op.
My results from the consultation with surgeon were not there so she didn't fully know wht was happening. Out came my list and i filled her in. :roll:
Her reply was she couldn't really tell me and when I asked are there any other patients with this problem she said she knew of none. :sad:
She said as for driving i would have to try it and then think about the safety of me and others. Everything else I will just have to adapt (again :roll: )and get used to it .she said "you are still relatively young" :P and was amazed I had a nearly 23 year old daughter about to get married
She said they don't see many cases like myself as now the drug treatment is used in much higher doses at the first sign of arthur.
So not much to report, will have to keep my list for surgeon.
will rhummy doc again in 4-6 months, or after op.
atleast now i am going quite regular as before i was seen every 18 months.
Thanks for reading.
Take care
Juliepf x (with a headache) :roll:

stickywicket

Hi Julie,

Glad it went more or less OK. I, too, get the 'we don't see many like you' treatment. Husband tends to call me Exhibit A. We belong in the archives.

As for driving - I drove for several years with very little neck movement. You just need to use mirrors more. Might be worth having a word with one of the places that regularly do Motability adaptions.

You seem to be handling it all really well.

dreamdaisy

Oh dear, my poor pink flamingo. Not really what you wanted to hear, was it? Being unique is a bit of a bind, I bet you are fed up with blazing all these trails for others to follow. I agree that it's good that hospitals now put new people with RA etc on much higher doses of the rubbish that we take in an effort to knock things on the head - but why the hell has it taken them so long to realise what should be done? You have paid a very high price for their dithering (as have a few others on here) and you are still paying. Je suis peeved.

Knowing you as I do, you will adapt, you will adjust, and you will win through, because that is how you tackle life. Focus for now on the wedding - try to ignore the RA and the associated problems as there is little to be done about it all at the moment. I agree with your rheumatologist on one point - you are young for all of this. The unfairness grates. Harshly.

Get some rest this afternoon, I hope the headache clears, say hello to the lovely Maurice for me. I am thinking of you. DD

barbara12

Hi Julie
It would have helped if they had seen lots of people with same, I am sure you will get round the driving some how.
I hope your next appointment give you more answers
Good luck with all
Love
Barbara x

julie47

stickywicket thankyou for your kind words you make me smile exhibit A
As you say I will have to try more mirrors first and see how that goes.
OH has already done work on car to make it easier ie.. make it into a left foot drive(auto) and fixed a hoist for scooter, athur keeps challenging him as well as me We will try not to let arthur win

DD thankyou too for your kind words. Yes I think you know me pretty well now and you know i won't give in too easy, Rich also won't let me give in too easy and will do anything to keep me on the road.
As you quite rightly say forget it for now and yes focus on wedding 9 weeks tomorrow :P

juliepf x ps thankyou too barbara you just pipped me at the post

frogmorton

Hi Julie

Poor you going on your own :???: Still I reckon you do do pretty well.

I have students every time when I go as it's a teaching hospital, I find it useful too as he expalikns to them and l evesdrop

Well done for being so organised and it paid off didnt it? You ahven't got home to think...I wish I asked...this...or that.

Good question did he know anyone who hasd had the same done. Sorry he didn't and taht he couldnt answer the issue about driving - knowing you you will

Julie you dun gud there

l too am very glad you are seen so regularly.

Love

toni xx

traluvie

Hi Julie,

Just read your post and although i am not familiar with your history, i just wanted to say hi and to keep up the gd work and positive thinking, you must be an inspiration to many..
Take care and i hope you feel better later, put your feet up and have a nice cuppa...

Tracy
xxxxx

hileena111

Hi Julie, What a blesing it must be to have an OH who can do things like that.
My car is a little micra and i doubt that i could get my scoooter in....but it goes in to Peters car in pieces ......I worry about him because he has a slightly sore back and when we are on hols.....he takes it to pieces puts it in his car, we go somehere, he takes it out again, etc etc for the rest of the day.
I'm thinking of getting an automaticc but am a bit scared. I dont need one yet but my car is 8 yrs old and we were thinking of changing it soon so it would be to an auto.....When my ankle gets worse I cant just say "I need an automatic LOL its my left ankle [where a car reversed over it and then drove over it }
Things seem to be going well for you and you will adapt.
Love
Hileena

tjt6768

hi Julie, just wanted to say I hope you are ok....
Hope you do manage to keep mobile.... I'm not going to have to be careful crossing the roads round here though am I? Lol

Hileena, took me a while to admit to myself that I needed to get an automatic car mainly my stupid blokish pride, lol..
It's great though, so easy to drive...

ironic

Hi Julie,
I am sorry that you didn’t get the information you needed about your neck. Could you get in touch with the surgeons secretary and explain that you need a clearer explanation of the procedure and probable outcome? They must know that people come out of the first consultancy with more questions than answers.

I hope the wedding plans are progressing well. At least you got a complement about looking so young.
Lv, Ix

julie47

Morning everyone hope you are having an ok weekend (got my fingers crossed for you all )
Thank you for your words of support, you all make me feel so much more positive.
I.... yes the comment made me grin from ear to ear (but I must admit she wears glasses and may need new ones)

Tony not feeling too bad under circumstances thank you , hope you are ok after the visit to the deep. (my parents have been and thought it was great)

Toni you always give me lots of encouragement and I want to thankyou for that

Hileena, I have had an auto for a number of years ,(15 years) and yes you do think of it as driving a dodgem car at first and keep wanting to grab the gearstick but i would really recommend it. OH's car is manual and he loves jumping in mine as it is so easy.
I changed to auto cause arthur was causing lots of problems too.

Tracy
thankyou too for popping in and thank you for the cuppa I really needed that.

All of you enjoy the rest of the weekend
Juliepf

dreamdaisy

Afternoon, julie47pf, I hope you are resting today and feeling a little better. I am thinking of you. DD

hileena111

Hi, Sorry have been off the forum for a few days....just catching jup with some threads tonight.
As for the automatic...it not pride lOL that went when I got the paddymobile {mobility scooter} to be used on hols and visits to large towns....its just sheer terror....I have visions of not being in control of it....
Love
Hileena

arty

Hi

Hope your neck is feeling a bit better, I'm just getting to know everyone so stick with me.

I just wanted to say that when I read 'Rheumatology app' I thought you meant an APP for an iphone :oops: Had to tell you

julie47

Morning Arty

That made me smile Oh yes apps are for phones now aren't thy

Neck still giving me problems but I can cope thank you.
Have a good day yourself

juliepf x