UPDATE UPDATE!!!: Hi All where do I start???? ok here... - NRAS

NRAS

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UPDATE UPDATE!!!

sciqueen profile image
29 Replies

Hi All

where do I start???? ok here goes. In July after starting on Enbrel in April, I scored a das score of 124 - yippee. But I am not in remission, for me it has translate as no flares, I still have daily aches which I take cocods & codeine for, but less than before. Other wise I have been quite well and to reach this point for me took about 18 months.

Returned from center parcs last Friday and it was brilliant. I swam, even managing to go down the flumes, had a lovely spa day and it was a week of leisure and rest. In fact I was so active, I came home with muscle strain in the back of my right thigh, which has just eased up over the last couple of days.

Work have not been so understanding and I am loosing my job due to all the time I have of in the past 2 yrs with ra. I'm just gonna look for another teaching post next year. I'm trying to stay positive, but confidence in teaching has been severely knocked. Before you all start saying that can't happen, they are not going after me via health, but competency instead. It transpires that I'm negotiating to leave with references via the unions. They, my head has used competency even though its very weak to get rid of me. But the real reason is the amount of time I have had of. I've been expecting it though and I hated the school, so there is no loss on my part there. I won't be the first and I certainly am not the last!

My eldest has been home with us for most of the summer hols and he also came on holiday with us. I've love it when he comes home as I feel whole again. Unfortunately he'll returns back to uni early September. Boy I'm gonna miss him all over again.

Sorry I've not written in ages, I've been busy with my new found health, I have though tried to keep up with the blogs.

Take care and I must say hi to Sylvie & T - hope you are well. Summer I hope you have started your anti tnf and scoucer thanks for enquiring about me on fb

Keep safe and well

J xxx

The pic is of me 2011 oh hols in Italy (Vatican gardens) just before I got diagnosed with ra, hence the wrist supports).

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29 Replies

It's been a long time and I have wondered where you were and how you were doing. Good to hear that Enbrel is working it's magic for you, not so good to hear that you are loosing your job. Thanks for the update, take care. xxx

sciqueen profile image
sciqueen in reply to

Many thanks x

miss profile image
miss

So pleased you tnf is working well for you. Not so wonderful what your employer is doing. Hope thing will sort them selfs out. Best wishes xx

sciqueen profile image
sciqueen in reply to miss

Frig the employer, there's lots of school out there, I'll found another. I'm not sure if I still want to teach, certainly can't do it full time, so I'll look on TES, and see what grabs me.

Thanks for the kind words though

Joanne x

It's good to hear you are feeling so well and respect to you for getting on them log flumes! Employers can be rotten but hopefully there's a better job waiting for you around the corner. Best wishes

Paula x

sciqueen profile image
sciqueen in reply to

The flumes are awesome and I surprised my boys by still going down them all be it, it was hard work. This was the first time I did not hire a bike, I humed and arhed and decided not to hire and it was ok, I managed with just my walking g stick, which I used when ever I felt tired. Hopefully if I'm still well I would to go abroad next year.

By the way center parts provide sharp bins. You have to go along to the medical centre and ask for it, and they will dispose of it when you are done!

Cheers J x

Hey sciqueen good to see you back again, sorry about the job, their loss. great to hear about the embrel working, freedom at last from the dreaded ra

sciqueen profile image
sciqueen in reply to

Hi Mass

Been steroid free now for 1 year (oral) and my last injected steroid was last October. I was on steroids for about 9 months and the oral steroids were causing my skin to thin. Also I really itched when I was on them, although I did not know it was them causing it, until I eventually came of them.

Good luck with your reduction of them, I'm envious as you always seem to be able to reduce them when needed easily. I was resentful.

Take care Joanne x

sciqueen profile image
sciqueen in reply to sciqueen

Sorry Mads - I've used my Kindle to reply & it's got stupid predictive text, can't turn it of :(

sylvi profile image
sylvi in reply to sciqueen

Joanne i am still in the process of coming of the steroids and i have been on them for years. I am so pleased your back have missed you,but you being missed means the drugs are working which means you have been able to have a life and for that i am most happy for you. I am glad you are back with us.xxx

sciqueen profile image
sciqueen in reply to sylvi

Missed you to hunny, are you still a night owl? J x

sylvi profile image
sylvi in reply to sciqueen

Not laterly i am not,i have spells when i don't sleep and then i sleep like the dead. Happily at the moment i am sleeping fairly well. I have other health concerns to deal with like meniers disease and two weeks ago i had a fall and i am still suffering from that.xxxx

wiliby profile image
wiliby

Lovely to hear from you :) wondered where you were and delighted your doing so well xx

(better explain, lost my old account, was just 'wiliby')

sciqueen profile image
sciqueen in reply to wiliby

Cheers hun, keep well Jx

Hi Joanne - great to see you back - please stay around where possible especially while job searching. Glad the drugs seem to be holding things down nicely for you - long may it last! Tilda x

sciqueen profile image
sciqueen in reply to

Hi T

I'll try to respond & blog more frequently, especially now that for a while, I will have the time. Will send pm, so we can catch up

Jx

in reply to sciqueen

That's great J but I'm just off down to Aberdeen now and travelling again next week so please forgive me if I don't get back to you okay? Rush rush this end! Txx

Nice to see you back. Was wondering about you.

Carolynx

watson3 profile image
watson3

Hi Joanne,

Glad to hear you are feeling well and that the drugs are working. Employers nowadays care little for our health. One door closes another opens. Working amongst negativity is bad for good health.

Nice to read your news.

keep well and good luck with the job hunt.

carole

sciqueen profile image
sciqueen in reply to watson3

How right you are. Gonna remain optimistic

J x

summer32 profile image
summer32

nice to see you in the flesh and nice to hear from you xx. the decision was no anti tnf at this stage!! even though I had high enough score.. thnk your score would be 1.24?? well done on no flares xx

sciqueen profile image
sciqueen in reply to summer32

Sorry to hear, still no anti tnf, but I hope you are well. Yes story it's 1.24

Cheers Joanne

lorann profile image
lorann

Welcome back, Joanne! I was afraid you were one of those we lost recently due to some odd remarks that I personally never did see...But! For you to be doing so well is wonderful for you, You may be able to show the "powers that be" that you are worth a whole lot more than they assume! Good for you for not giving up or giving in! Stay close, you were one of the oldies when I climbed up out of the ocean and onto the beaches of London :) 2 yrs ago! Loret xxx

sciqueen profile image
sciqueen in reply to lorann

I hear you babe, happy belated birthday

J x

Dotty7 profile image
Dotty7

Hi Joanne

Not teaching in a school where I was under constant pressure has been miraculous for my health. I hope you enjoy the break from it, and then find somewhere much better to work where they will treat you with more compassion - though it sounds as if you are doing so well you won't especially need it.

All the best,

Dotty x

sciqueen profile image
sciqueen in reply to Dotty7

Hi Dotty

Thanks for the encouragement. That's what I mean by, see what turns up. The stress & pressure of the recent changes haven't help, as I feel constantly stressed, although I love teaching. We'll see what turns up, after all I've a string of qualification and I'm a qualified microbiologist.

Cheers J x

sylvi profile image
sylvi in reply to sciqueen

Joanne as one door closes another one opens and i know this is what will happen for you.xxxx

sciqueen profile image
sciqueen in reply to sylvi

How right you are Sylv. I see loosing my job as another opportunity, not as a mistake! I'm looking forward to the future never backwards.

Joanne xx

sciqueen profile image
sciqueen

Thanks for reminding me, good luck with your biologicals, which one are you going on and when?

Jx

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