[lovelylinzi]

hi all,
i got told in september i have lupus, but for the past yr everything has gone down hill, for all mylifeive been a pro cheerleader and gymnastbut now most days i cant even walk proppa, :sad:
alot of my friends dont seem to understand proppa as to look at i dont seem ill, does anyone know of any meeting places where i can meet other people with lupus? i live in east manchester uk,

xLINZIx

 

[DJGun]

hi lovely dan here i've been there my friends never understood i hope you find somthing after livin with it for so long i started researchin i found lupusmn.org and it seems there is a meeting within a couple miles of my home so am tryin to get the courage to go well goodluck

 

[Lily]

Hi Linzi and a warm welcome to you :welcome:

It's very very hard to have this disease diagnosed when you are so young. It's a time when you should be out enjoying yourself and not having to worry about anything ((((((Linzi))))).

Has your doctor started you on medications to help with your symptoms?

Lupus UK has a national number you can ring and they will give you the number of a local branch. They probably have lots of get togethers where you can meet other people who suffer from lupus. The national number is 01708 731251.

We also have quite a few young people here who are diagnosed so you might like to post in the Under 20's forum and I'm sure they will come along and welcome you. They may not come along straight away but keep checking for replies.

If there is anything any of us 'oldies' :lol: can help you with don't hesitate to ask :hug:

love
Lily

 

[RosemaryP]

I have met others

but of course I have family members with Lupus as well. There will be a society in your area and it is good to meet others, even if to realise your problems are not as bad as a lot of others.

 

[lin]

Hello and welcome you will come under the lancashire and cheshire lupus group the same as me, however there isnt one near me,im in cheshire, but a few in amncester ( there a young persons contact 01612233601) ring it it is lupus uk if you need any more numbers ask good luck


Lin xxxxxxxxxxxxxxxxxxx

 

[pennylp]

Hi there,

:welcome: to the site,

It must be hard to have your friends not understand what you go through.... This is a good site and there are young people here also... So if you are lonely and want to chat, check the chat room, or post on the site... even if some of us are older... We are pretty good talking companions... Take care and I hope you find a meeting place in your area... hope you chat with you soon,

love Penny

 

[Clare.T]

Not many of us know others with lupus in real life and not many have friends and family so understanding that we can freely talk about our problems.
However much they want to help they don't have the understanding of living with chronic illness of any sort. I must admit I don't want to hear other people talking about their disease or health problems at any length.
People with lupus might have only that in common if we're talking about friendships.
I would like to get to know people in my area all the same- I like & appreciate the one I do know who's also a member here. We have a special bond because of that but thank goodness we have other interests in common.

My experience of live support groups has not been good. Knowing there are people much worse off doesn't help me with my problems it just makes me feel bad about myself, that I have no right to complain and invalidated.
Also I found an unhealthy element of competition, who's the worst off.
For me at least the forum is ideal.
I can participate as and when I want without the hassle of going anywhere or the commitment of a solid block of time.
Apart from online support I like going to conferences when it's feasible and affordable and hearing the specialists talk and the general social side of it too


Clare

 

[rwb200]

Hello
When my wife was first diagnosed with lupus we did not know anyone who had Lupus but I quickly found out a friend at work had a sister with Lupus.

Since that time it seems we regularly run into people who have lupus, have relatives with lupus or a friend or coworker with it.

In our area a Local Lupus chapter holds meetings from wime to time and my wifes doctor hosts a lupus group in his office once a month for any of his patients who want to come.

Ask your doctor if they know of any local groups. If not ask them if they ahve other Lupus Patients and if they would host a group once a month or so.

Our doctor just posted a few flyers around the office for several months when he first started. From time to time he will put a few out so that new patients can find out about it.

He gives them access to a part of his office for a couple of hours once a month. I'm not sure how he works it with opening and securing the office and making sure that no one has access to anything they should not.
I'm sure that is a concern.

 

[LBH]

Hi Linzi

Hi Linzi! I live in an area where the closest foundation or groups are just to far for me to drive. But there might be an area close by to your area. The forum here has some great people here and finding friends here are wonderful!

 

[sjink]

HI Linzi
There is a group that meets in North Manchester I think at the hospital there and also one in Glossop. They both come under Lancashire and Cheshire Lupus Group. I can find the details for you if you want as I have them somewhere.
One of the hardest things for people to understand who don't have lupus is how we can look well and feel ill. I am not sure there is an answer to that one.
Sorry you are feeling so bad, Lupus takes a while to adjust to.
Do you have a good rheumatologist - a lupus specialist? That makes all the difference
Love
Sara

 

[lovelylinzi]

thanks everyone who has posted replys on this thread,
can i have the details for north manchester one please,
my lupus sepealists at d hosptil are really nice, i go to MRI (manchester royal infermary,

linzi xx

 

[sjink]

Hi LInzi
You go to the same clinic as me. They are brilliant there, you are in very good hands.
The details for the North Manchester meeting and other meetings are at
http://www.lclupus.co.uk/
which is the Lancashire & Cheshire Lupus Group
the group near you is North Manchester which meets at the North Manchester Hospital at 7.00pm on the first Wednesday of the month. You need to contact: Pauline Casey - to get Paulines number you have to email David Price I will send you his email address privately.

Sara xxxx

 

[dudley]

Hi

When DX with lupus I really found out who my friends were. Friends of over 30 years dropped me like a hot potatoe.

I was always there for them and when I needed them...well they were gone.

I have never met anyone with lupus. Have always wanted to. Nearest current chapter is to far.

Found out from rhummy that a person he treats is trying to get a group together. I have been intouch with her via phone. She is starting a chat on my space. I just have to learn how to use it. She does not plan on having a meeting till september.

She does have lupus that sounds worse than mine...she gets hospitalized alot. I hope it is not a contest of who is worse.

When I found this site it was a God send. I found out so much about the disease...made great friends and did not feel so alone. I have actually signed on to chat when really down and just ask for a joke. With in 10 mins went from crying to laughing.

I hope you find a group that is great.....in the mean time we are always here.

If I find a group that I like I would recommend this site. I never plan on leaving here

Elaine

 

[lyn1659]

lyn1659

hi every one, i have just been diagnosed on 12/08/08 and got wrong straight away of the doctor , as she asked had i had my hol's yet to which i replied no am going in september to italy for 2 weeks and was told in no uncertain terms to keep well out of the sun. the bit i am not looking forward to is the meds.