What someone to talk.

Hey, i got diagnosed with lupus a few months back, and im still learning about it. so was wondering if people could help me.

[kittykat68]

hey hun wots upx

[Hidden in reply to kittykat68]

Just looking for people to talk to who understand what's going on if you know what I mean

[Paul_Howard Partner LUPUS UK]

Hi IcklePrincess92,

We have a free information pack that I would be happy to send to you. Just send me a private message or email [e-mail] with your name and address.

We also have regional lupus support groups if you would like to meet with other people with lupus and we have telephone contacts if you would like to chat.

Please let me know if you would like any more information about these and I will do my best to help.

[Hidden in reply to Paul_Howard]

All of it sounds great thanks

[Paul_Howard Partner LUPUS UK in reply to Hidden]

OK, great.

If you want to send me a private message or email with your address then I will send you an info pack, let you know about your nearest support group and give you a contact telephone number for one of our volunteers who you can chat to.

[Hidden in reply to Paul_Howard]

Thank you i will send you an email now

[gladysw in reply to Paul_Howard]

Hi Paul I was diagnosed with SLE lupus, and will like to receive a free information package and meet and chat with other people with lupus. My address is... ***************************. Thank you,

Gladys Wilson.

[Hidden in reply to gladysw]

Hey if you want to chat, you can message me if you'd like

[Paul_Howard Partner LUPUS UK in reply to gladysw]

Hi Gladysw,

I've edited your address from your comment as this is a public forum and I thought it best to protect your sensitive information.

Unfortunately we are not able to post our information packs overseas because it is too expensive for us. You can however download a digital copy from our website at lupusuk.org.uk/want-to-know...

Also, I cannot provide you with details of support groups or contacts in your area because we are a UK charity and I don't have the information available - sorry. Have you tried contacting the Lupus Foundation of America to find out what is available in your area?

[Lil-Miss]

Hi IcklePrincess92,

Where to start? How are you doing and coping so far since you've been diagnosed?

[Hidden in reply to Lil-Miss]

I'm coping as well as can be, but struggling cause can't really talk to anyone about how I'm feeling

[Lil-Miss in reply to Hidden]

People on here are very friendly and always willing to offer advice. Remember you are not alone. Try see if you can attend one of the groups to speak to someone.

[Hidden in reply to Lil-Miss]

How do I attend a group and thank you

[Lil-Miss in reply to Hidden]

If you sign up to the Lupus UK mag they will send you info on the nearest groups to you and you get lots of info.

Take care

[Lucy74]

I think one of the best things to do is just start to scroll through the posts - that will really help you learn, and you'll be able to pick out things that are relevant to youself. And then ask questions! Folk on here are REALLY helpful!

[Hidden in reply to Lucy74]

Thank you, think I will

[Wendy39]

Hi! I think the first couple of months are horrendous after the diagnosis. I think everyone deals with it differently. I was diagnosed in November 2013, so 17 months ago now. I joined Lupus UK to get their magazines and I bought 4-5 books to read. I wanted to know everything I possibly could about what I was dealing with. I also wrote a blog for this site about those first months. That was quite therapeutic. Luckily my medication slowly worked and now although I have symptoms every day, I am able to live a relatively normal life. I know I am lucky, my lupus is mild. I know also that it might not always be that way. I would say keep a record of your symptoms and how you feel, as it's impossible to remember months down the line at hospital appointments etc. Be pro active in your medical care. And anything you are unsure of, ask here. You aren't alone. And people are happy to reply and share their experiences and knowledge. They are a very kind bunch of people. Finally, I have learnt not to push myself and not feel guilty about resting. I put myself first sometimes. I wish you well.

[Hidden in reply to Wendy39]

Thank you reading this helped