And so the journey continues

LignumVitae

I'm funded
Hopefully I will soon get my delivery and we can start to see if etanercept works for me. I had almost given up hope because I had heard nothing and when I called my nurse yesterday and got no reply I was even more down in the dumps. I'm super duper sore at the minute with new joints jumping on the bandwagon whenever they can. I think I might be near my breaking point as I'm really struggling to stay on top of everything and keep myself going.

I honestly think this has been one of the most taxing times for me mentally. Arthritis plays so many games on you but sometimes the hardest one to compete in is the one where you just have to get out of bed and keep going every day and stay hopeful.

I might still be sore but I'm now a little more hopeful. Maybe, just maybe there will be a bit of relief ahead. Thank you all so much because you have all helped me get to here and you have all picked me up at some very low points. This isn't the end, I have lived with my opponent and game master long enough to know that but maybe the road will be a bit easier for a time. Who knows.

stickywicket

(((())))

My lasagne can wait. This is more important.

LV, I couldn't be more happy for you. I so understand your reservations. So much hangs on so little, and so precarious, a thing but...it's a chance...and a hope....and maybe, just maybe....

Your two little bundles of energy are, I know from experience, what get you out of your bed each morning. You are one of the strongest people on here. I will take some convincing that you actually have a 'breaking point'. You may go down temporarily but you will always – maybe not 'bounce' – but at least 'crawl' your way back up. Remember the old chinese thing – what doesn't destroy you makes you stronger. (How lucky we all are, having all these opportunities to gain strength )

Please, please, please keep us updated

mig

Im so pleased for you LV,hope you can now get stated.I started on humira 2 years ago now and it changed my life,from not being able to get out of bed because my feet hurt so much i couldn't stand ,now i have limitation as we all do living with arthritis but lifes good for me.I so very much hope that it works for you.Love to all Mig

Susiesoo

Hi LV, I am sorry you are struggling so much and I so hope this will work for you and help you turn a corner. Good luck.

Susie

LignumVitae

Thank you all, Sticky, you've made me blush :oops: I don't think this has been my strongest summer but who knows, maybe things are looking up. Definitely entering the phase of cautiously optimistic for now. I had a lunchtime bath to celebrate (I'm working from home and my little adorables are tiring my Mum out ).

theresak

Hi LV,

I`m so pleased you got your funding, and I hope you don`t have to wait too long to start your new drug.

I`m on humira - 7 years now and counting - and it made a considerable difference to my quality of life. Hope yours works as well for you.

Boomer13

Good news LV, I'm so glad to hear your funding has come through.

I will be watching with interest for your posts on how the etanercept experience goes for you. There is a little self interest in this as I'm waiting to start it myself.

Best wishes for the infusions to start soon, go well without too many side-effects, and a good result from the drug.

Slosh

That's wonderful news! You deserve it so much. I really hope it works for you as I know you've really been going through the mill for the last few months. You really are an inspiration.

dreamdaisy

What fantastic news - this has cheered a dismal day and I am very pleased for you. I sincerely hope this med makes a tangible difference to your life ((( ))) DD

Numptydumpty

That's brilliant news LV
I really hope it works for you, you so deserve it!
Fingers crossed ((((()))))
Numpty

barbara12

That is such good news LV, and I really do wish you well with the meds..you deserve a break from all the rubbish you have had thrown at you..xx

LignumVitae

Thank you all so much, you made the difference again! Arthritis seems to have taken this latest development very badly and so has decided to throw all its weapons at me whilst it can. I think tripe may be the answer until (or instead of) the biologics.

phoenixoxo

I hope it works out for you, LV

Do you know how much longer you'll have to wait? Is there anything that could help you in the meantime? (as well as tripe, obvs )

Best wishes,
Phee

LignumVitae

Thanks Phee - I think I've exhausted all options bar the tripe but obviously as soon as my delivery of tripe arrives I will be overdosing on it (has anybody else noticed the delay in ordering tripe and receiving it?).

Had I not been so super sore I may have laughed at the irony of the claims yesterday morning that the beleagured NHS needs private sector input to create efficiencies in the system because the NHS part of my process was signed off to the efficient private sector (Alcura) three weeks ago and still they have failed to act. Who knows when they will?

stickywicket

((())) Plus a free sample of SuperTripe on its way

phoenixoxo

You're welcome, LV

Here's a few ((()))s to add to sticky's – and now I'm imagining us in a strange sort of huddle!

I hope you find your free sample of SuperTripe beneficial

Input from the private sector to the NHS might work in principle, but I doubt it'll be a smooth transition, unfortunately. Putting on my prophetess hat, I see inconsistent training standards and styles, resulting in communication problems and delays in delivering service. But I'm keeping my toes crossed that you'll get your new meds soon!

Best wishes,
Phee