Lupie Talk - Starting Women Only Chat Group & Book/Film Group (Men and Women)

[Bellaflowe]

Good evening, everyone.

I've written a few posts over the last few years whilst undergoing diagnosis and treatment for CNS Lupus. I've had lupus nephritis for 14 years and after dealing with that as an 11 year old, I just got on with everything. I had my flares, my dark days and my days when I felt like I could finally be 'normal', although that never lasted long! I've been in denial so many times, pushing myself to breaking point when I should have listened to my body instead of my pride and my friends. But, it's hard isn't it? When you want to do something and you simply can't. It's tough and it's painful and it's heartbreaking. The last few years have been hell, and I mean real hell. Being so terrified of suffering that badly again, that it feeds your anxieties and insecurities like a three course meal. I've been in pain that I can't even describe. My personality completely changed. I had migraines so excruciatingly painful that I couldn'the open my eyes for days on end. I spent every day doing nothing and feeling like such a failure. I've been there and I know that so many of you have been there, too.

I want to open up a platform to talk about our daily lifes. Our illnesses and first world problems. Our friends and family who may think they know better or who have supported us and deserve praise. Our failures and our achievements. AND MOST IMPORTANTLY - Something every day which makes us smile or laugh. Be it a cup of tea first thing in the morning or your child saying something funny.

First of all, I want to ask - Does anybody live in Edinburgh, The Lothians or in the surrounding areas?

Secondly, I want to ask - Would anybody be interested in starting up a girlie chat group on here or a Facebook page to share our daily lives? The bad, the good and the funny? (As well as still being able to share on here, of course! I'm not trying to redirect you from this wonderful site! Facebook is a bit easier to access for some people to talk, share photos and have scheduled daily chats with all of us!)

- Just wondering if anyone would be interested in starting up a page for women with lupus. I don't mean to exclude men and I do apologise for that. The reason I want to begin a 'girls only' group, is because there are certain health problems caused by lupus (or 'sister illnesses') that are a bit sensitive for some of us to talk about around men, like being unable to have children. I want to form a group where we can talk about everything that troubles us, healthwise or otherwise, in a safe and supportive environment. Women together. Please do let me know if anyone would be interested.

Also, if everyone is not already asleep due to the essay-like length of this post, I would like to propose another idea. Due to my lupus, I have a lot of time of my hands. On my bad days, my joints are too swollen to walk or the butterfly rash on my face makes me too insecure to go outside (due to people pointing and staring when I do!) I've always loved reading and watching films, and when I'm having a bad day (as described above), I love to lose myself in a good book or film. So, would anyone like to join a book/film group if I set one up? I was thinking of beginning the book group with a book I've been meaning to read for ages. It also happens to be one of my all time favourite films. STARDUST. Any other suggestions welcome! Let me know if you'd like to join and I'll happily set up a group. When life gets tough, travel to another world filled with mystery and magic. Yes, I did just say that extremely cheesy line.

So girls, please let me know. If you have any ideas you'd like to propose, please do! I'd love to hear from you. Even if you don't want to join anything, just chat with me. I'm always looking to meet new friends!

All my love and hugs,

Suzy. Your fellow lupie sister. X

[lupus-support1 Administrator]

A wonderful post, Suzy.

I am sorry but I do not live near you.

However, I really like to take up your idea. However, Facebook is not that private and there are concerns. Might I suggest another FREE alternative where you can post pictures.

16 years ago I started LUpus Patients Understanding & Support (LUPUS) and currently, we have a secure Message Board here: lupus-support.org

All its facilities are FREE. There is only one restriction: you have to SignUp (Free). There are numerous forums - and I could even create a "Suzy" forum for this purpose.

It could even have a sub-forum for Films/Books and I could appoint you its "Moderator". Despite all your difficulties, you are a breath of fresh air.

Let me know if you are interested.

Be well!

Ros

[gogspr]

I am a male with SLE and think your suggestion regarding an all female Lupus group so very, very wrong. I also live in EDINBURGH and, whenever possible, attend Lupus meetings in the local area which are all attended by ladies, we all seem to get on well and no other males are ever present. That said, most meetings are poorly attended and to have segregated meetings would,if successful, mean I would have virtually no opportunity to meet fellow Lupies. Finally, I appreciate some SLE effects are gender specific, they are very much in the minority and, even then, are given the discreet understanding and emphathy required of this male Lupier.

[lupus-support1 Administrator in reply to gogspr]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

We especially welcome men!I know one of our regular members would certainly welcome another man at the LuPUS MB!

Please let me know if you have any problems. You can contact me: roz [at] [lupus-support] [dot] [org] [dot] [uk]

I apologise for the delay in my response to you.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.