Date: 29.11.2009
From: jill
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Subject: Re: just need to rant
Hi Sue, sorry to her about your recent diagnosis, we all think we r the only onesm until we find a fab forum like this one, if u come if regular, u will feel part of a family, I havnt been on for ages really, use to be on here daily, but been unwell, with neck and shoulders, also just had swineflu jab, in leg, doenst hurt there, and felt fine un til to days later, exhausted nd sicky, but do have it if u get offered it...its worth having it done, get it out the way ok.... also for U, u have Only just ben diagnosed......it took me such a long time to accept my condition, i have Inflamatory artha, similar to R.A..... we all get upset, angrym depressedm tearful, exhausted, sadly its part and parcel of this nasrty insidious disease.....Sue, U need to read and find out about everything with regards your illness, so u can be prepared..... BUT and a big BUT, it doenst mean everything U read means that will happen to you..... it doesnt happen all at once, its a progressive disease and thankgod u got Methrexate so fast, ive had artharitis since early 20s, im now in my 40s...late 40s lol....but i have a young brain of say 18 lolol.... being positive is everything Sue, u Must stay strong, even if u r low, c0me on here and tell us, u will realise U r not alone..... we all have a connection, family do0nt alwyas understand, I tell my fella nd family if im feeling particularly poorly.....regards Methrexate(MTX) it will kcik in and dampen down your conditiuon, take it at night, so u sleep thru the symptoms, u may feel sicky the nest day, eat ginger nuts, or something lie a digerstive...does help.... im on MTX and now enbrel biologics combined, has stopped the regular flare ups that lasted months, i do get flare ups, but far less, and dont last as long.... i do get tired, so i listen to my body and go to bed, I cannot work, had to give up m,y job, found that hard..... I also didnt know for years that DLA existed.... U MUST claim for disability benefit ok..... tell them U cant cope at all....agony etc, tell them yur worst days, everyday, dont mention any good days or u wont get it, tell them hubby washes yu etc....also make anappointment with Occupational therpaist, they will put up grab rails and bansiter rails for free... im waitinf for more support and they also provide a OBNE off grant for work to be done, im hoping to ge that and get a new matress, mempry foam..... unfortunately, Ive got to have another spine op in coming new year, and had 6 xrays recently and been told i need physio on neck(discs gone) and upper spine as arthritis in it, and tht my shoulders have Impingement, means I need shoulder ops again...so rhummy told me, waiting to see surgeon......so i am like u, sad, cld cry , angry and feel a burden to everyone, i have 5 kids, youngest ten...im lucky i have a great fella, he does help so much..... for me, what upset s me is tht i am on the MTX and the Biologics, yest im still needing corrective surgery..... i thort those meds were my last resort, i bancked on them, yet I persoanlly still have probs, doesnt mean that U will, or anyone else, I jsut happen to have it everywhere, in every tendonand ligament, and eyes...... how I loom at thing is....there r others far worse off than me out there in the big bad world..... all of us r here for u..... so please come back and keep talking to us all..... we r a gr8 bunch and we do larf too...i have met some fab people tht i now talk to on facebook for a giggle..... helps so much...... anyway good luck and let me know how u get on take care, ps....if u ever have appointments and u havnt heard from them, dont sit and wait, ring up the rhumatologist nurse or any consultants u r under and ask what is happeneing, sane goes for xray depts ok...xxx
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