Hi
Am i the only one who gets fed up with people saying " your looking better" just because ive had a shave and put some nice clothes on to go out . how do i make people understand that its stuff inside me that wrong not just the way i look.
Also the next person who asks " but how are you in yourself" is guna get a kick in the butt!!!
Sorry just needed to rant hope everyones ok out there.
lmao - gotta agree with you on that one - and of course the best of all is "but you don't look sick" !!! AAAAGGGGHHHHHHHH.
Totally agree with you there Kerro. It drives me nuts when people keep saying to me either "you're looking better" or "there doesn't look like there is anything wrong with you". You feel like screaming at them sometimes!!
Just got to keep smiling!!! 
Sharon
I get that all the time, some of my friends (!) think I should be back at work cos I look so well !!!!!
Had my mitral valve replaced & one of my friends said I shoulkd be running around like a two year old. People are just ignorant
Hi again Trace,,hope your day has bin bit better?I posted a question,,i really hope i get help with it.Have been on phone to my rhuemy,,but told ive gotta try these meds,,one being Tramadol!!!!!
Hi Dawn, I was put on Tramadol but found it quite ineffective. I was refereed to the pain clinic and they helped enormously. They put me on co-codamol, Pregabalin (a nerve blocker) and Zomorph (Morphine).
It does not remove it completely but makes it a little more tolerable when the pain comes.
Hope this is of help to you.
Yes i also some days just want to scream,,,hey i dont look sick ,but do you wanna swap places,,they soon shut up then!!
Hi Dawn, had a great day, went to lunch with a friend & had a really good laugh.
I have Tramadol find that sometimes they help & sometimes nothing does. Also have dihydracodeine & paracetemol, but hate taking them cos they make me feel sick & upset my stomach, hope your days been ok x
Trace,,so glad you had a good day chick,,and hey laughter is a great remedy.Ive been indoors all day infact two days now,was supposed to go to a aucoustic eveing last night but felt too tired to gt ready,never mind venture out,,in the cold..brrrrr lol.My friend has dihydracodeine,is that better than tramadol??I dont its just ive heard too much bad about tramadol dunt know if i wanna tek it!!
Hi Dawn, you poor thing, its awful the way Lupus stops you living your life. I dont get to go anywhere other than the Drs or hospital & there have been so many times that Ive not been able to go out with my friends that when I do, I enjoy it so much.
Tramadol is stronger than dihydracodeine, as you know, all tablets cause side effects but as i said, its a catch 22 darling. I cant advise you what to do hun, wish I could but I dont know how they will affect you, also they can interfere with other meds your taking, not much help am I darling, sorry. Feel better soon sweetie xx
Could not agree more ...... you make a little effort in the hope that the reflection staring back at you does not scare you, and you get "oh you're looking fantastic" ....... the malar rash can also give you the rosy glow look. I get "look at the rosy glow of health in your skin" ............ sick of contradicting and now just say ......... thank you ............ less stressful for me, and less stress mean less pain. My advice would be to pay no attention to these people who are ignorant of our disease, which unfortunately number in great quantities.
Totally agree with you but I must admit I don't shave! Lol Not yet anyway! pmsl If you really feel the need to kick someone's butt, do it hard enough to make us all feel like it was worth it! Thinking of you. x
Brilliant! exactly how I feel as well as someone always seems to say it when I am dragging myself through another day of exhaustion. Either I am very good at putting on make up and a brave front or they need their eyes tested.
However I work for a charity and often get referrals from our local hospice and when I was in there the other day a palative care nurse asked if I was ok as I looked so white. i could hardly answer her because I thought if she thinks I am white I must look awful lol.
Please feel free to take revenge for me to.
Better access to consultants/specialists
Some better new
''Miracle cures'' and things that people who mean well say that have made you want to hurt them
How many people here have Sjogrens Syndrome?
Thank you
