A meet up?

[blondie22]

Hey guys. Anyone in swansea or around the local area able to arrange to meet up and have a rant and rave and also the ones who have recently been diagnosed or have had the condition for years or whatever about our condition. Maybe have a fund raiser going on to support this illness. Let me know your thoughts on this. Much love to you all xx

[VivPotter]

Hi, I am in Llanelli. Nice to know there is someone else near! Happy to meet up if u want to get a group together x

[Hardy1]

Hi Blondie, it has been 17 years since my diagnosis and it does get lonely sometimes cause people don't get it and no matter how much pain you are in you can still look fine! Lol

[blondie22]

Hi VivPotter and Hardy1. If I can arrange a meet up and get everyone together I will. Arrange an area that every one can get to easily. It would be amazing to meet up and get to know the ones who are suffering with lupus. Show some more support to one another and have a fund raiser to support it also. Please put the word out guys. I will put a group on Facebook called lupus support and arrange a meet there as well as on here.

[Happykins]

Hi, I'm from Llanelli but live in mid Wales now. Recently been diagnosed with uctd.

Would be interested in facebook group also xx

[VivPotter]

Yes let me know if you want to meet up, anytime. X

[blondie22]

This is the page group on Facebook I made yesterday facebook.com/lupus.support....

Soon as I have enough people on there can start and arrange the meet up then. Would be amazing to meet and get to know others that also suffer so we can then keep in contact and support one another

[Paul_Howard Partner LUPUS UK]

Hi blondie22,

Have you been in touch with the South Wales Lupus Group? You can find out more and contact them through their website at southwaleslupusgroup.co.uk/

[Michelle_68]

I was wondering if there is anyone in the us on this site as I have been dealing with many of the symptoms listed and believe my sister passed away 3 years ago due to complications of lupus and other auto immune diseases. I am so very tired all the time and have taken care of my husband who had health issues of his own for many years and now he's on my case that he thinks I'm too over weight and that it will kill me. He gives me guilt trips that my kids and grand children will miss me, he wants me to run like he does, he doesn't understand that I hurt so bad or am so exhausted, that I can't. I just want to sleep all the time. I have many digestive issues and my pain in my joints and the rash on my face almost consistently, as well as forearms that are almost deformed due to inflammation. ......im just tired of being tired. ...any help I live in Iowa and I feel so alone

[Paul_Howard Partner LUPUS UK in reply to Michelle_68]

Hi Michelle_68,

We do have quite a few people living in the US who are members of this site. There is a feature available on here called 'People near me' which you may want to have a look at. If you click on your username at the top of the screen, it will open a drop-down box with 'People near me' on it. If you use this service, then it can show you other members who are in your area.

Have you been in touch with the Lupus Foundation of America to see what support they may be able to offer as well? If not, you can learn more about them at lupus.org