Hi Trace

Hope you are feeling a little better with the back, and you manage to see the week out, lovely to know you much support at work.

Hope you can take the Enbrel with you Tuesday, the sooner the better !

Have a lovely restful weekend

Julia xx

HI Tracey,

Just wanted to say you've done amazing, I really hope Enbrel works, I'm sooo looking forward to starting mine..

I completely feel for you re: your work situation, my circumstances are similar..I got diagnosed one month after starting a new job, work full time and have a 9yr old to support..don't want to/can't realistically afford to go on Benefits..And I love my job..
A positive attitude and sheer will power has got me this far (I got diagnosed a year ago)..but after just having come out of Mega Flare and looking at things logically, Iv'e decided to ask my employer if I may reduce my hours and work 4 days instead of 5 for the next 3 months...This will hope fully give Enbrel a really good chance of controlling this "unguided missile" we all know as RA.

I've cried and agonised over it, but as we all know.. that we have know idea when we are going to have good days and bad days and it always takes time for RA meds to kick in and its different for Everyone..
Hopefully my employer will know exactly where they stand, for the next 3 months at least and go from there...
The stress of phoning in sick is awful and I always feel guilty, especially if I've had a good run of feeling ok and people constantly tell me I look well?!!! what they don't realise is that I have to get up 3hours before work to get ready in time to actually get in to work and that has nothing to do with vanity, just morning stiffness and taking meds and getting child off to school..
Sometimes I wish there was an extra day in the week just to accommodate the daily extra's of RA, picking up prescriptions, appointments, blood tests etc..its exhausting...
I hope your feeling better and that whatever you do...now or in the future ..do what's right for "YOU"..


Hopefully Enbrel will work wonders for both of us and continue to work for others too.

Much love, I've been thinking of you all along as we shared the "flare".

MoB xoxo

Tracey I really feel for you. I am in a similar situation at work. I struggle in because I want to keep my job. I can't afford not to work and would feel devastated if I had to give it up as I love my job. I work in the NHS with people who have learning disabilities. Having RA has actually made me better at my job in a lot of ways as I can genuinely empathise with people who need support to do everyday tasks and who take longer to accomplish things.
I had to take 7 weeks off work recently due to a severe flare when I could barely move. Since then I went back on a phased return and I have managed to arrange to work just 3 days per week for the next year with my full time post is being held open until then. I know I could not manage more than this at present. I really feel like I am hanging in there by the skin of my teeth and it is so difficult dealing with colleagues who don't understand what you're going through. I am feeling pretty rotten at the moment as I am in a lot of pain and my steroids are making it impossible to sleep at night. I will go onto dmard treatment for the first time next week so I live in hope. I have read your recent posts and I have to say you are an absolute inspiration to me. I think you are amazing for how you are battling this horrible illness. Hopefully our new treatments will work and we will both be able to manage to stay in the jobs that we love. I want you to know that I am rooting for you. Hang in there. You can only do your best....and you sound like the sort of person who does just that.
From Naomi.

Trace

I am sorry you are still in pain. Yes you can get rib pain with RA. I have been suffering from this for the last couple of weeks but wondered if it was the way I was sitting whilst doing my office job. The ribs hurt inside and out. I asked my Consultant RA during my appointment last week and he said you can get rib pain with RA but did not elaborate further.

I also sympathise with the frustation of not getting done what you want or need to, especially when you have a working week looming. RA has a lot to answer for.

Please take care when you go back to work tomorrow and I hope your employer and colleagues are sympathetic.

Jackie
xx

Hi Trace

You poor thing I am so sorry that you are going through so much at the moment. Why don t you think about doing your shopping on line, it is one of the best things I have done and I still manage to get lots of good buys too.

Thinking of you Julia xx

Hi Trace

Sorry to hear of your ongoing problems. Hope you get a great and fast result from the Enbrel, I did so well on it first time round so fingers crossed for you.

Wondering how you got on today? Has your son started college? Mine's loving it, thank goodness!!

Take care Trace,

Lyn

Hi All,

I had an apt with Rheummy nurse today and she taught me how to do the Enbrel, so I have now started.How easy it was too!!! I wasn't gonna wait for Healthcare at home to pull their fingers out!!!

My apt lasted for nearly an hour and I found out so much information about different things that is going on with my body that I didn't know as this is the first apt I have had with the Nurse. Really helpful.

I have just about managed 2 whole days at work and am in constant pain still in my feet and off and on in my hands. My right instep is red and swollen and stings alot. I find this a really 'annoying' pain. If that makes sense??

I seem to be getting a lot more respect, understanding and empathy from my work colleagues of late as they seem to be asking a lot of questions about what is wrong with me and what it's all about.

I am happy to answer any of their questions and do so to the best of my ability. I also feel more positive about things being at work as I feel if I didn't have my job, I wouldn't have a reason to 'get up and keep going'. However hard this task is in the morning GRRRRR

Lyn, my son is loving 6th form and is more willing than ever to talk about his day.

The rib pain.............OMG!!! it is on the same painful par as shoulder pain.........unbearable!!!!!

I think the time has come for me to contact my housing ass to ask for help with getting some safety handles installed in my bathroom as I am finding it very difficult to step in to the shower and get out of the bath

Stay well and pain free ladies, lots of love......Trace xx

Hi Tracy
I wish you the very best of luck with your new treatment. Thank you for your lovely thoughts on my last message to you. It made me cry too when I read it. I just had a thought about your showering and bathing difficulties. Have you had a home assessment by a specialist rheumatology occupational therapist? I am hoping to have one at home and at work soon. My GP said I could access this service through my hospital rheumatology team. It might just back up what you are saying to the housing association and get things in place more quickly. I really can empathise as I am finding it hard to get in and out of the bath too (I don't have a shower) and when I was really ill I found it impossible and had to go for a whole week without a bath. That was really awful and made me feel very down. Currently I have to sit on the end of the bath and slide down in....and to get out again I slowly push myself back up by walking my feet along the bottom of the bath whilst praying that my knees will take the strain. I am so scared of getting stuck that I take my mobile phone into the bath with me in case I need to summon help (but that would be so embarrassing that I'd probably just stay there).

I am going for a hospital appointment tomorrow to start my first course of dmard (methotrexate) and I am a bit scared but I think of you and what you're going through too and it helps me to know I'm not alone. I will definitely be following your progress on your new drug and keeping my fingers crossed for you.
Best wishes from Naomi.

Hi Trace

Oh dear, you really didn t need that to happen - you are holding up so well, a great inspiration to us all

Hope the Enbrel starts to do what its meant to do very soon!

Thinking of you Julia xx

Hi Trace,

Sorry to hear about your fall.......like you needed that to happen!!
Hope the enbrel kicks in soon for you.

Love Doreen xx