As a relative newbie, I am slightly hesitant to contribute !!!!

I joined late last year, hoping to learn a bit about my possible lung condition. I soon realised that I was out of my depth, (thankfully ), as I do not appear to suffer as greatly as others. I have however always kept an eye on everyone's posts, incase they may be of some help. I have followed all the 'traumas ,' and exits, but at the same time, loved your good sense of humour and happy banter. I am now at the stage where I feel I do need advice, and am worried about, " popping up out of the blue." It seems that some members are questioning people like myself, who have joined and not contributed. In no way do I wish to judge anyone's issues on here, but I'm just saying, please consider us newbies, who are a little nervous anyway. I have lupus, and am a regular poster on lupus uk. I can identify with members more, for obvious reasons. The small participation I had yesterday on this site, was very helpful to me. I will pop up randomly as I cannot give you any advice. So please everyone, be careful how you phrase things about new members, as it is very unsettling. Looking forward to getting to know you all properly......Lisa

74 Replies

  • Well I am a very new newbie, only joined last weekend. Did a posting this evening re my doctor wanting me to have Spirometry test, but think only half the post has come out. Can anyone let me know please.

  • Welcome london64.

    There is some missing in the second box. I think you are able to edit it.

  • Hello london64 welcome to our very friendly helpful forum lovely to meet you.Im afraid Im a bit of a numpty when it comes to computers so am not able to help you but there are many here that do.Look forward to seeing more of you. Keep well and be happy :) Janexx

  • Welcome to the site London 64, there are lots of friendly people on here all with different illnesses, so there is usually someone who can help you out. Cheryl

  • Hi london64, I'm a complete dinosaur with all this, but I know you can only put so many words on the first box. Then scroll down to the next box, to continue. Sorry if I am treating you like an idiot, because you already know this, but that's all I can think.

  • Sorry, but this pits has just cracked me up and can't stop laughing ......I know it's not what you meant.....but.....sorry for treating you like an idiot, because you already know sorry. It must be mt sense of humour. Lol

  • Hi grammy123, don't get it, have you got the right member ????

  • Hi and welcome 6161. :)

  • Thanks puff TMD. wish I wasn't here, but glad if you know what I mean.

  • Thanks 6161, I'm quick at the typing, but when it comes to anything re common sense that's me done. I'll try again!

  • Hello 6161......I only joined a couple of months ago but don't post much.....just read a lot. Nice to meet you in cyber space.

  • Nice to meet you too, littleusker.

  • Welcome to all you 'newbies' I hope you won't let others comments put you off posting and joining in on the forum.

    Its a great place to learn about your condition, and to come when you have worries or concerns you want to discuss with others

    I am only fairly new to the site as well, but I have already learnt so much that has helped me to understand my condition, and learn how to help to slow the progress of my illness.

    This site is a blessing to us all

    I hope it also helps you

    Love Sohara

  • Thanks sohara.

  • Hi 6161 ,

    I joined in November but only started to post a few weeks ago. Welcome to the site.

    To ..London 64 , your post came out perfectly! I was trying to reply but lost the post . My typing and computer skills leave a lot to be desired. Welcome. Will try again tomorrow.

    Cheers Coastal.

  • Thankyou coastal1

  • I think some of the comments have been more to the idiots that have used the forum for spam. But welcome to BFL my sister as Lupus so I now what you are going though, PMA

    Be Well

  • Thanks offcut, as I said, I am a dinosaur with computers, so what doesPMA mean ?

  • Positive Mental Attitude

  • Thanks will try and remember it

  • Such a lovely letter I too am new on here and I am a little confused if I am doing everything correctly. I do suffer a awfull lot with my chest .Breathing gets me down . I have Bronchetisis .Have also just gone through lots of tests and waiting now to have IV Antibiotics, they are still not sure if its a really bad infection or fungus. like you I read everyones letters and I don't feel so isolated. pleased that you have decided to write . Monica!

  • Hi there Monica nice to meet you welcome to our forum you have come to the right place,between us all there is a wealth of experience from the horses mouth so to speak,much information to hand and a few laughs along the way.Your doing just fine really.You sound like your a little under the weather at the moment if your waiting on iv etc hope the meds work quickly for you and you get better soon.Yep my breathing gets to me ,mostly i manage and get on with things now at a snails pace.We all have those low times which is why this place is so great cos we are not on our own anymore.We are all interested in each other and support when we can.Do hope you benefit as much as i have and continue to..Really nice meeting you Monica see you soon keep in touch and let us know how your doing. :) Janexx

  • Thanks daffodil, I was told bronchiectasis at first, which is why I came to this site. I am told emphysema now, although the cause and diagnosis is under question. I have health issues everyday, but the lack of breath is for me, the scariest.

  • Hi 6161 I have emphysema. I agree lack of breath can be scary. I just try to stay calm and control my breathing. Sometimes easy said than done. Take care.

  • Thanks suzy6. Good advice, thankfully I am only breathless when my lupus is flaring. Otherwise my breathing is ok

  • I have moderate/severe COPD and asthma. I read posts, questions, links etc every day but rarely feel I have anything to add or ask. I have learnt loads from the experiences of others and know that I am very likely to get a sensible, useful reply to any query. Love the jokes, compassion, humour, banter, friendliness. Have a great day one and all!

  • Hi BigBreaths your name made me smile. I don't know if you are old enough to have seen one of the old 'doctor' films where the doctor says to a 'well built' young lady who's chest he was listening to.

    'Big Breaths' and she replied Yes and I am only 16 :) :)

    This may not be that funny now but It made me smile then and your name reminded me of it.

  • Funny reminder. But was it not . . . "yeth and Im only thixteen!" I had the same thought when i first saw BigBreaths' username too - great name.

  • 'BigBreaths'…I absolutely LOVE your username :) Made me lol ;)

  • Hi big breaths, these forums are very useful, as I have found from the lupus site. I posted 2 days ago about my PFT results. A member on here interpreted them for me. That's what is so good about it. Drs may have all the medical facts, but unless they live with the conditions they treat, they can never understand what it is like. I too love the jokes and banter, and even without contributing in the past, I can understand why, KOTC, was such a big loss to all the regular posters.

  • 6161 you are so right KOTC was a massive loss to us all/ M x

  • Hi Lisa this site is for everyone who suffers from any type of lung disease from asthma to end stage. Everyone is at different stages. I am not as severe as many on here but still come into support any way I can. We all have different experiences and we can all help each other. Even if you feel you cannot help it is supportive to come in and say hi to newbies or even just to say you have read the post and wish the poster luck even if you can't offer any advice. Everyone needs to support each other and everyone can offer support if not always advice. So please don't be nervous about coming in any time.

  • Thanks coughalot1, couldn't agree more. As I said previously, I am a big contributor to the lupus site for obvious reasons. The point I was trying to make here was, don't think I am a troll or whatever you call it, because i only chip in now and again.

  • I don't for one moment think you or any of the newbies are trolls Lisa. It does happen but they soon show their true colours. I always reserve judgement until then and I think most of us do The more you come in and contribute the more others will get to know you and realise you are ok. xx

  • Feeling better already, thanks coughalot

  • Good Lisa :d xx

  • Hi Lisa ...I'm relatively new here too but every have has been a god send ...welcome an feel free to contribute ask questions ...very knowledgable an friendly people here ...regards Wes

  • Thanks jettace, the brief involvement I have had here, has been responded too with, good advice and kindness.

  • One thing that newbies should remember is that everyone here was a newbie once. We all went through the same worries. Is my spelling ok? My grammar? Am I out of my depth? Am I asking a silly question?

    Just join in. If your spelling and grammar aren't great, so what. Nobody is going to pull you up for it. We have seen everything before and will no doubt do so again.

    This is a great site with some good people who will try to help you with answers to your questions. When you have a lot more experience just remember that you were a newbie once and try to help the new ones in your turn. None of us have all the answers, but between so many of us we can usually find one.


  • Thanks Philips1, good advice, will defo be around a lot more.

  • Hi Lisa and welcome. I think you can give advice actually because I am carer for my hubby Pete but my daughter-in-law has lupus and is now pregnant with baby due early September. Do you have any knowledge as to what she can expect? So far, she is doing well but gets very tired. She works full time and keeps as fit as she can. I would be grateful if you could shed any light on this horrible disease and good to have you as part of the community. xxxx

  • Finally home sassy and sorry to make you wait. Where do I start!!!! In simple terms, our bodies make antibodies that attack us. It is a multi system disease that can attack any part of our bodies. The usual symptoms are joint pain and swelling, fatigue like you could not imagine, and skin rashes. Lupus is a great mimicker of many other conditions, and a lot of us have secondary other conditions. The common ones are, thyroid disease, vasculitis, sjorgrens, Hughes syndrome, nephritis, raynauds, and many others. The disease can attack your organs, cause chronic anaemia, and cause you to lose your hair. Triggers that can activate the disease,( known as a flare,) are sunlight, strong indoor lighting, stress and infection. Often there is no cause. Steroids are the major players, to control the disease. We take immunosuppressants and the basic drug for most lupus patients is an anti malarial called hydroxy chloroquine. There is no cure for lupus, but that doesn't mean we will all suffer with the above. Remission is possible, and your daughter in law sounds as if she is coping well. Hopefully her lupus will still be under control for a long time. It's no different to the people who are on this site. There are lots of us out there with mild lung conditions, as there are with lupus sufferers. The most important advice I can give is, please make sure your daughter in law has clearly stated her health probs, and is being closely monitored by a good obstetrician who knows about lupus. Good luck, hope I've not gone on about it too much. Feel free to ask me anything about this disease.

  • Thank you so much for that brilliant reply. Sorry I have not seen it sooner but am so grateful. Lupus has some similarities to Sarcoidosis which is what my hubby has (I am his carer) as it also is a great mimic of other diseases. My daughter-in-law is doing well so far and is not taking medication but using diet and exercise to stay well. She does have to take care with stress though and is very naughty about sun bathing. I will keep an eye on her and I am sure she is being cared for properly. Thanks again and take care xxx

  • Hi sassy59, did you get my reply regarding DILaw and lupus?

  • Yes, thanks and have replied to you. Sorry for delay. xxxxx

  • Hi sassy, glad to be of use, although I am not an expert on pregnancy in lupus. I will gladly explain this disease, but am going out for the day soon. So will definitely fill you in later. Hope it can wait.

  • I am new here and still gaining confidence I ignore anything that has no interest for me that is working for me so far.

    I am forgetting my manners a belated welcome as a posting member.

  • Hello and welcome to us both too :) I am a newbie, joined 2/3 days ago and posted one thread question but reading on here everyday. Everyone is so helpful and kind :) I found answers and comforts within a few hours of chatting :)

  • Hi to you too, threegorgeouskids

  • Hiya Lisa wishing you a very warm welcome,looking forward to getting to you more.As far as Im concerned we are all equal here,your worries concerns and questions are of the same importance ,and we are all different thank heavens for that .Weather we like to post or just read please never feel judged cos the majority of people just dont even go down that road checking to see how often one might or might not post or pass comments.This forum has opened my life up ive learned so very much,ive laughed a lot and shed tears sometimes.This is a good find for anybody suffering or caring for somebody with lung issues.So hope to see you soon be happy keep well :) Janexx

  • Hi long lungs, thank you for your lovely welcome.

  • Welcome Lisa! I think the others have said everything I could say. I think quite a few people join and stay silent for a while until they feel comfortable to ask a question or comment on someone's post. When I first joined I was already at the very severe/end stage point so felt I already had plenty experience to be able to offer advice from my perspective but I seem to recall the first thing was a question I needed answering! It was so great to find other people with the same fears and problems, I didn't feel quite so alone with this horrible disease any more. We seem to experience our illness in different ways, but there is always someone out there who has just the same difficulties as you. Look forward to seeing you in the future. Libby x

  • Hi libby7827, thank you and so sorry to hear your condition described as that. Take care.

  • I don't contribute as much as I used to for various reason but every day I read the posts and questions and if I an help I will do so, hope you find the answers you are looking for.

  • Thanks second life, I'm sure I will.

  • Hi 6161 I too have only joined a few days ago and asked a couple of questions which people have answered or tried to help me with, very welcoming and friendly people on this site, I check in every day and read all posts very informative, very helpful and so great that people can make light of illness and just crack on.

  • Hi bryju, yes I agree it is a friendly site, and I too love the banter and laughs. They don't take themselves too seriously, which I like.

  • I joined about 6 months ago, but rarely contributed anything. I always read the posts though and found them very helpful. My husband had Pulmonary Fibrosis and sadly passed away last Saturday. I'm heartbroken.

  • Oh, Jolyn! My heart breaks for you. I remember you being so worried about him a few months ago. Well, you don't have to worry now love, he is at peace. The hurt will recede, hard as it is to believe now, and you will be able to cherish the memories. Please ring the BLF if you feel the need to talk to someone, they really are wonderful. xxx

  • Thank you Toci...even though I'm heartbroken...I do feel a great sense of was so sad watching him go downhill over this last year.

  • I think we sometimes forget how hard it is for carers. At least you know he is not hurting any more. I hope you have family and friends around you. Sometimes though, it is easier to talk to people on here and don't forget the helpline where they have trained counsellors. My thoughts will be with you tonight. xxx

  • Thank you so much Toci.

  • Hi jolyn, I don't know what to say except my deepest sympathies go to you and your family. There are no 'right words' to say, that can help, but please don't be alone with this. Sometimes us ' faceless, nameless, people can be good source of support. You can rant and shout all you want to us, knowing you will not bump into us on the outside. I have unloaded a lot of feelings on the lupus site. My family know none of it, as I like them to believe I am still going strong. How sad to have been introduced to you under these circumstances. Please post anytime and keep in touch . Lisa

  • Thank you feels unreal at the moment.

  • Hello Jolyn please accept my condolences at this heart breaking time.Everything must be feeling a little surreal for you at the moment.Take care of you and know that we are only here if you need to talk etc. :) Janexx

  • Thank you Jane ...yes, it does feel surreal at the moment. :-( Lyn xx

  • Hi Lisa, I joined a few weeks ago,I look on the site everyday,it has been such a help an comfort,people on the site have been kind and surportive,I love the humour,as it is so good to laugh,if can advise or help others I will,look foreword to hearing from you.x

  • Thanks very much puff puff x

  • Welcome to the site 6161 I think you will find us quite helpful on here. I only joined last year, but have had a lot of helpful advice. I do not come on here every day and sometimes when I do I don't feel well enough to answer posts. However hope to see you again soon. Cheryl

  • Thank you poppyval, the response I am getting is certainly keeping me busy. Take care. Lisa

  • Sending my condolences Jolyn.

  • Thank you kindly.

  • I'm a newbie too - just three days since I joined - and I've made an introductory post. Not sure about forum etiquette here but just wanted to say hello.

  • Hello argana, thanks for saying hello, I will look for your post. I don't think there is any etiquette here, just be yourself. Take care.

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