I was diagnosed before Xmas and am now going through the battle of getting my meds right as I still have too many pains, breathlessness etc.
Is it just me or does anyone else get sick of being told how well you look or being asked if your better now?
Yes apart from the scaley rash around my mouth that I've grown a beard to hide I do indeed look well, however, they can't see the pain when I breath in every time. They can't see me stop to catch my breath after walking up the stairs. They can't see me stand motionless like a statue because I either aren't sure what I'm doing or I just don't feel right. They can't see me struggling to sleep for more than a couple of hours a night.
But I must better cause I look so well.
Rant over, thanks for reading
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Neiluk75
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Just smile and say thankyou. I get asked all sorts of things like, 'Are you finished running to the hospital now?' its almost become a mantra to me now - I'm doing so much better, thankyou. Sometimes it even works... But then I do think I am doing a lot better now I'm on treatment and understand what I'm up against. I use makeup to cover my blotchy skin though I might try your tip and buy a false beard.
Lol I must admit I've always been clean shaved and can't stand it. But it looks a lot better than the red rash which looks like I've worn lipstick and smeared it off at the end of the night (just for the record I've never worn lipstick lol)
Every day. Totally feel ya. The thing that gets me fueled is when I'm at work & I work so much harder than anyone else, cuz I pick up slack, and these kids are almost 10 years youger than me. They always make the what's wrong or u look tired comments. I hate symptathy, so I don't complain, instead I get angry that I'm still doing more when they're sitting & hanging out. Wish I didn't give a damn. O wait, someone has to. I've noticed lupus has made me so much stronger. It sucks big huge ones, but damn have I changed for the better. But now just gotta work on not hating the whiny annoying people.
Yes I can really empathise- in fact I now just say I am better as the meds are working and then change the subject. You have made me chuckle though- I hadn't looked at the author of your post and assumed it was written by a female- so when you mentioned your beard I thought ' I hear you as the steroids I have taken for a year have encouraged facial hair growth!
Claire if your beard is as bushy as mine then you really need to talk to your doc about your dosage levels. Yes I guess with 90% of lupus sufferers being women. You will mostly be right. I like to be different. My rhumy keeps reminding me that it's unusual for men and a lot more awkward to treat
I really don't know. I'm just going from what my rhumy says. She just repeats that she finds it a bit more aggressive in men and hence harder to control. Mine seems to have a liking for my internal organs as oppose to joints etc so maybe that's it. Maybe others can shed a light. I've had quite a few comments to my posts all from women so maybe that's just the case that there's few men for them to learn from?
I've had SLE since 1998. Men seem to get kidney involvement more than women. I have had lung and joint issues, but my rhumy defers to the nephrologist in deciding my current meds, and my nephrologist always asks me what I think. I feel better being involved with the decision making process. I'm luckily doing quite well at the moment. Fatigue main problem, but I am active and working. If you've got any questions please ask. Best wishes Eddie
My rhumy always asks before changing meds. My kidneys are ok at the mo but she keeps a close eye on them. It's the pleurisy and pericarditis that are causing my issues as they don't seem to be responding to any meds. Off for lung function tests tomorrow so fingers crossed for that
How did your lung function tests go?. I'd just like to add that if your diagnosed with pericarditis or pleurisy then higher doses of steroid will usually work. There is an anti- inflammatory called Colchicine that works for pericarditis. I've been on it 3 months with no problems and it's worked for the chest pain. I'd had the pain for 6 years on and off !. I'm sorry your battling it too, it's horrible. Hope you get answers and help. Misty.
I won't get the results until I see my doctor next week. Then I have a echocardiogram aswell next week. The indoneticin are meant to be treating the inflammation but I'm not sure they are helping. Also she's increased my steroids 3 times. The lady yesterday said if they are scarred then it can't be reversed. I have a heavy cold at the moment and that's not helping the pain and breathlessness at all and the cold seems to be getting worse not better
Hi and sorry you need to have one but glad you have a diagnosis which is at least a starting point.
Secondly you are now going to guinea pig some meds until they find some that wil help which is a bit trial and error but you and the medical folk will learn which ,when and how much to help you feel a bit better.
Then you need to acquire some thick as rhino skin and a strong sense of humour as these are probably the two most important things to keep you sane or or in my case the usual nutty self.
After that look back through the posts on here and learn some great quick answers to the similar quotes of looking good and there will always be someone who knows someone who has magically become cured and works like a hero marathon man at which time a few pre learned clever remarks can help.
There is of course the educational way of handing out a lupus bookmark or leaflet,available from Lupus UK so that they might genuinely understand.Even suggest a fundraising event which could be fun for them and will also get them interested in learning what they are helping which will help you in their attitude to you especially as you can push the "how rare it is for men" thing!
Whichever or whatever I think we have all been through it at sometime or many times so please don't let it get you down as its hard work enough dealing with the flipping illness and juggling,not literally as its a beggar to have to get down and find them,the meds and on going appointments.
Take care and come back to let us know how you're getting on.
I was diagnosed 17 months ago and it has taken about this time for my friends and family to understand what it is I have. All I can say is that it takes time.
I used to get soooo annoyed with those comments (as well as the "oh, I know so-and-so, they have lupus and are fine on meds") but now I realize they either don't understand (and how could they? I wouldn't understand what a cancer patient goes thru) or they just so badly want to know that I'm okay. I'm lucky to have folks who care about me and they are worried but don't want to say. Any others who may be just insensitive I've learned to ignore.
Over time I've gotten better at my responses. This passed Christmas I discovered an effective response to the "are you feeling better" question is to explain that, with lupus, there isn't any "getting better" but rather, "getting by".
When asked, "how are you feeling?" I've learned to be honest and say, "that's a complicated question and I'm not quite sure how to answer that. I have good days and bad days. Today is a (insert good or bad) day. Thank you for asking".
My response of late to the comment, "My, you look well!" Is to smile and say "Thank you, it's all smoke and mirrors" OR "That's so kind of you to say. I have my two friends Covergirl and Maybelline to thank for that." I'm trying not to lose my sense of humor!
Try to remember that EVERYone has "something" that they are dealing with and we all put on our masks. You can let it get to you or you can try to figure out what works for you. I used to be so very angry - and there are the days where I still am, especially when I'm not feeling particularly well - so I allow myself to feel those emotions. However, I don't want to go thru life angry so I try to appreciate what it is I do still have and what I can still do. Some days I'm grateful and others, I need to just let off steam and have a good rant. This is a good site for both ends of the spectrum.
You are newly diagnosed. I applaud you for discovering that your beard helps you to put a good face forward (as does the hair products and makeup I use to face the world!). It shows that you still care about yourself and trust me, those positive comments (ie., "you look so well") you will come to appreciate.
Being on this site, being apart of this community and learning how others cope helps TREMENDOUSLY. I'd be lost without it!
Yep, I don't think I know anyone around me who gets this, and I get the 'you look well' constantly but that's because I make an effort to make myself feel better. Quite frankly I've given up talking about it or explaining it coz I know I'm wasting my time. I now spend that time on me coz I need it ☺
I feel your pain. I was diagnosed with SLE over 25 years ago and most people I meet tell me I look great. They want to try living in my body for 24 hours and see how GREAT it really is.
Yes get this too. Don't think people have a blinking clue about Lupus, how serious it is and how unwell you are daily. The meds just make it all feel worse. I've just been diagnosed with discoid Lupus as well as my SLE diagnosed with renal failure back in 2000. But hey don't I look well my face and body all red and angry like I've been burnt. Oh and my 33 year old daughter says if I mention a bad day that oh yes it's all about you isn't it, drama, drama, drama! Also cheers to my bosses who know I'm VERY light sensitive in my eyes, light can blind me or cause my scleritis to flare but hey ho let's move the desks opposite massive windows and let's put all the lights on to boot! Oh dear I had a lil tantrum there, whoops lol. 😜
Yes I know what you mean. It is annoying when I'm trying to stand up to talk to them and not stagger about when I walk. You feel as though you will fall on the floor if you stand in one place for long. Your looking well they say but you can't tell them how you really are because they don't really want to listen.
Hi, No problem I know exactly what you mean. Even my own sister, brother and father are always saying this, so goodness knows what some friends think and say to others!! I had not seen my sister for well over a year at Christmas (she lives 10 miles at most from me) and it had been 6yrs since she had actually visited me at home.......her first words were "Oh you are looking really really well not ill at all" grrrrrrrrrrrrr and you know when it is not someone who is trying to boost your confidence etc. So yes I too get fed up with these ill informed people but there is no way to make them understand what we go through. Maybe when they get ill themselves a little understanding may creep in Neil.......my Bro recently had a bout of sciatica.....and I know it is painful but.........he really thought he was dying!!!
I must admit my family are great and worry themselves silly about how I am. My sister comes with me to every appointment as I struggle to take in what they are saying sometimes. Am very lucky with support I think
People cannot appreciate that if you look well it doesn't mean that you are well. I always say if you could see what is going on inside you would not say that !!!!!
Hi,know how you feel but what gets me also is every time you go to the Doctor with something they just say it's the lupus.Just reading about your breathing problems and wondering what treatment you have for it? I have had breathing problems for over 2 years now and have heaps of tests etc but no one has come up with a treatment yet, just lots of you poor thing.i am so over it. Sorry about the rant but just fed up with life at the mo as I dont have one. Cheers, not so cruisey.
'You look well!' Yes everyone wants you to be, so smile and say 'yes' or if appropriate say ' I only go out on my good days', those that get it, remember. The others, well just don't fuss about it, they aren't walking along your road.
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