Good to see you all: I've been missing for a little... - NRAS

NRAS

36,580 members45,192 posts

Good to see you all

30 Replies

I've been missing for a little while I know. I suppose the reason for this is I feel a little unworthy since not knowing yet what the hell is going on with me. I see you all suffering flares and discussing your treatments and sort of think "Who am I to pass comment?" Also I've been sort of "digging in" and trying to cope without any medical support which has not been easy. I finally get to see the rheumatologist next Wednesday so hopefully will get some answers. My anti ccp and esr results should be with him so fingers crossed..if anyone can cross their fingers! I've got steadily worse over the past couple of months. My feet are really quite painful now most of the time as well as my hands. I've taken a couple of photos of my sausage fingers this morning to show the rheumy next week. I've also been keeping a pain diary for the past couple of months.

My ESA got stopped yesterday as I didn't score a single point on the medical so I had to go to the jobcentre today. I felt really emotional as the pain and worry are getting me down right now and just coping with daily living is enough without looking for a job too. Anyway the advisor I saw was just lovely and he told me to stay on ESA and appeal. He wrote my appeal letter for me as I cant hold a pen and I managed to scribble a signature. He said it could take around 8 months for the appeal and I'll continue to be paid ESA. Hopefully I'll have a diagnosis and treatment before that time comes.

I'm still following my healthy eating plan and have now lost 43lbs since January which I'm really pleased about. I finally plucked up the courage to go swimming 3 times a week and my swimsuit which was too tight is fitting just fine...if a little baggy in the bum! I'm trying extra hard to be good though because it's my silver wedding anniversary in August and we've booked to go to London for a night and see Blood Brothers. I'm really looking forward to it but can't believe I've been married nearly 25yrs..now I do feel old!

Following on from my very self indulgent few paragraphs I hope you are all keeping well and look forward to catching up. I'll have to do a little reading on the blogs to bring myself up to date. Hope you like my new picture? Decided it was time to come out of the closet lol.

Paula x x

30 Replies
sylvi profile image
sylvi

Paula, its my weding anniversary in august as well. I got married on the 20th and my birthday is the 25th. I have been married 29yrs this year. I am pleased that the person who you saw at the job centre was so helpful. I would have told you to appeal as well.

Just because , you don't have a diagnosis doesn't mean you can't come on here and vent off. There is definetly something wrong with you as your in so much pain.

Take care love sylvi.xx

Gina_K profile image
Gina_K in reply to sylvi

Hey Sylvie ,

My birthday is August 20th too!!!

I'm married 28 years on the 3rd of Sept this year (I think) :)))

Gina.

in reply to Gina_K

Hey, girls, mine is Aug. 23

previous November must have been very cold!!!

in reply to sylvi

Thanks Sylvi, you've all been marvellous on here, so supportive. August is a nice month to have a birthday. Mineis in January, far too close to Christmas and everyone's broke!

Gina_K profile image
Gina_K

Hi Paula,

Good to read your blog, and sounds quite unfair that you have to look for a job while feeling like this, maybe after you see rheumy this will change?

That is a fantastic weight loss and no mean feat. well done!!!! Crikey I am up a lb down a lb, cant seem to shift it, but trying....

I remember when I was 25 years married, ha , that was when I got diagnosed!!! As they say your as old as the man you feel... Just thought about that and my old man is getting quite cranky... Oh well, every step of they way as Peter Kay says do you know that joke??

xxx Gina.

in reply to Gina_K

It's been hard work dropping the weight but having a focus has really helped me to cope with my pain. The swimming has been fantastic, so good for the stiffness. If you're only as old as the man you feel I better grab myself a toyboy because mine's 45! x

sylvi profile image
sylvi

Gina i can one better than that as my hubby is 12yrs older than me. I say he is like a stradavaious the older they get the better they are. xx

allanah profile image
allanah in reply to sylvi

lol xxA xx

You are all making me smile a lot which is a great tonic!

Paula - don't be a daft hen - you have just as much right to come here and vent as me for sure! The pain you are in is very similar to mine prior to diagnosis but I feel outraged you've had to wait this long - especially as it should have been easy for them because you have a positive rheum factor don't you?

Sorry but it makes me kind of mad that you've had to wait this long to see a rheumy when you're in pain and need treatment while it's still early enough to avoid damage. Well done taking for photos. If you're like me you might have a negative anti-CCP but still get a diagnosis - hope it goes really well for you next week. Hang in there with the pain - that's a flare so you can moan as much as you like anytime.

It's great to see your photo - I wish more people would put them on or something to distinguish as those silouhettes get me confused because they are all so similar? Hope you're all listening sillouhetee people!

My birthday's early in January too and we've been married for 23 years but been together for 30! TTx

allanah profile image
allanah

Nothing different happens to me in August!! We were daft enough to get married in the afternoon of the 12th January in the dark. the only reason being I was due holiday that week!!!! ( well i was only 19)

But 32 year later hes still wonderful and we had a brill 25th anniversary and went to ~Antigua on our own for the first time without the kids!!! mmmm need a reason to do it again i think. lol

Well done on the weight when i get my mri will try to talk them into letting me exercise too.

Axx

in reply to allanah

19 is so young but saying that I was 18 and no it wasn't a shotgun affair! It's funny you tied your wedding in with your leave. Wish I'd done that. We got married on the Saturday and back in work on the Monday lol

allanah profile image
allanah in reply to

lol same here, took us 10 years to have the kids...careers, holidays, selfishness, s*x!! Oh i miss those days rofl xx

allanah profile image
allanah

mm just noticed so far i'm the longest married , anyone else beat 32?( and 4 years before that we met.)...a lifetime...mm...now i'm depressed!! I'll never know what its like to marry Brad Pitt lol

Axx

sylvi profile image
sylvi in reply to allanah

Don't be depressed allannah as it just goes to show what a strong woman your are as most young people today give up at the first hurdle. It is a celebration that you've been marrie so long. I always knew that when i married my hubby that i would be a widow before i would be a divorcee. I have a wonderful hubby and the poor man needs a medal to put with me at times. We have had some very hard times, due soley to ill health his/mine. Now he's retiring i'm ill with ra and it makes it hard for us. Never mind i would never find a man like him again. sylvi.xx

Trish53 profile image
Trish53 in reply to allanah

34 years for me Allanah! Went on coach tour of America's west coast for our 25th, but not had a decent holiday since. All change in 5 weeks though - going on Med cruise to treat ourselves after a hellish 12 months! Can't wait!

x

Trish53 profile image
Trish53 in reply to Trish53

PS - will change my photo soon Tilda, but my JR is far cuter than me lol!

x

allanah profile image
allanah in reply to Trish53

yee, you are this weeks winner, the prize is a Med Cruise all paid for by yourselves!!!!!!! dont think NRAS could fund this little competition lol xxx Axx

Hey Trish - look at me I'm representing myself with an owl - and one I drew at that - so I'm one to talk?! It's just that the sillhouettes are often the same ie yellow backround same looking head - so that makes it harder to know who we are addressing. It's nice to have an original image to talk to thought even if it's a JR or an owl don't you feel?! TTx

helixhelix profile image
helixhelix

Animals, flowers, faces.....anything that is more recognisable is great.

I'm also outraged Paula that you're being messed around like this. I really hope the next appointment turns things round and you get a proper diagnosis of something and treatment. Ask for copies of your blood tests and so on as that could help with ESA appeal too.

Hopefully things will improve in time for for your anniversary, and great that you've got an OH that remembers it! We've only been married 4 years (although together for 29 - not good at decision making!) and he has already forgotten even after I chose 1st August specially as it would be easy to remember....

Pollyx

in reply to helixhelix

That's a good idea Polly, I'll do that. I think mine remembers because I don't let him forget! Also we always take time off to do something nice each year anyway. More pictures/photos is an excellent idea Tilda. It makes findig each other in threads easier.

allanah profile image
allanah in reply to helixhelix

that still makes u "married "29 in my book!!! But Trish winning at the moment!! Axx

34 years Trish! That's wonderful. It's lovely to hear you have such strong marriages as all my local friends are divorced or still single. I would have loved to travel to Antigua or the West Coast but I won't leave my almost 12yr old labrador. Poor Bonnie got really ill from fretting last time we left her and I don't think she would cope now :-( Were going to push the boat out and cram as much into our night away as possible. First class travel to London, posh hotel, show and night to remember wink wink!!

allanah profile image
allanah

Woo hoo, posh do for you! And you have reminded me why not to have a dog, but i would SO love one, oh well can't have everything!! Axx

allanah profile image
allanah

OOPs! highjacked your blog paulywoo! lol Hope the appeal is sooner than later Axx

Hijack away, it's been lovely finding out about everyone concerned. x

Wow 43 lbs that is one huge weight loss.. incredible well done x, good luck with your appeal x

in reply to

Thanks Summer..it's 45 now :-) Don't know what damage Wednesdays steroid jab will do to that though?

Gina_K profile image
Gina_K

I have one little comment, I am married 28 years and with hubby 6 before that, so 34 and here is the stinger! I am 50, ah Ok I met him when I was 16!!!

I think I sort of woke up at 29, with 3 kids, don't remember any planning, or fussing. I did have a big white wedding, but I wore no make up and had a ribbon around my waist... Haha, I always laugh about that, a ribbon...

My two daughters aged 20 & 25, are always asking me if dad was my only.... they find it incredible.

I must post a new pic, ;love all the pics, I am not a dog. lol.

xxxGina

RichardL60 profile image
RichardL60

Sorry to spoil the party but I have been married for 41 years next year, strangely so has my wife?! We met and married when we were 18/19, I am the younger!!

Provided I ever get to see a rhuemy and get the drugs sorted we are off to St Lucia in September as a belated Ruby wedding celebration. Can't wait, sun,sea, sand ..... and lots to drink, maybe!

Hope everyone is as well as possible.

Richard

in reply to RichardL60

41 yrs! I think you may be the winner Richard and well deserving of that trip to St Lucia.

Paula x

You may also like...

Hi all, good news at last !!!!! :))

for a while. But hey i'm better than i've been of late and keeping my fingers crossed the embrel...

'To see you or not to see you'

I've been pondering alot about anonymity and using pseudonyms recently. I've realised that only a...

So relieved to see the words 'all welcome' :-)

Hi I've only just signed up and already I'm inspired by the amazing people coping with such...

You are all wonderful

was great! Love you all, you have been my rock during this little hard recovery bit :) Axx

Health and Happiness to You All

news that Ailsa Bosworth has been awarded the MBE. Very well deserved. i'm about to send NRAS...