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LUPUS UK
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Newbie...need to learn :))))

Newbie...need to learn :))))

Hi, very very new to this diagnosis. All alone as hubby not interested so also scared. Supposed to be returning to Australia by year end or lose my visa. My life rather complicated at present and now this...in a tail spin and dont know where to turn. Is there such a forum in Australia, anyone know? Just pleased to be with others who will understand where I am coming from in my head space as well as pain. Also just became a nana 3.5 months ago.

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Hello Loopy-Claire & welcome...we’re from all over the world here...several Australians are regulars...glad you found us! This forum has made a HUGE pos diff to me..i’ve been here for 7 years now: feels like home away from home!

🍀🍀🍀🍀 coco

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Hi loopy Clare

Welcome to the forum, I hope you'll get a lot of help and enjoyment from it. Lovely new arrival who I'm sure keeps you all busy!. I don't wonder though that your in a tail spin with having a new diagnosis and having to leave to go back to Austrslia by year end!. If you need any visa help citizens advice is the place to go or have a look at their informative website.

As to lupus I hope you've been started on meds and you'll start to feel better soon. You need to give yourself time to adjust to this life changing diagnosis and keep looking at lupus Uk's website as they have a lot of helpful info. As to your husband maybe he needs time to adjust to this and some lupus leaflets left out for him to read in his own time might help. You do need his support.

Hope you feel better soon and less alone. Ask anything on here as there's always someone who can help with an experience. X

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Hi there and welcome. So sorry you have been diagnosed in midst of such an unsettled period of your life. I can understand how unsettling the visa situation must be because my son had the same situation in reverse last year. He wanted to stay in Australia although I admit I was privately very relieved that he couldn’t!

I have Sjögren’s rather than Lupus but ironically the only Sjögren’s community on this site is the Australian one! It would be worth joining to ask about Lupus support, rheumatologists etc because there is so much overlap between these autoimmune diseases. I go between this community, the Australian Sjögren’s one and a couple of others.

Your grand-baby looks adorable - congratulations!

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I cannot see my post replying to you Twitchytoes....any idea what I have done wrong?

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Sorry I don’t know but same thing often happens to me too!

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Hi there, I’m actually in Australia so you’ll be able to access this forum when you return. Do you know where you’ll be based once you return?

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Hi, I will be in Brisbane, hopefully South East (still new to Aus as well)..where abouts are you? :)

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There is definitely an Australian Sjorgrens society and I access that from uk, so presumably you can access Lupus uk from Australia? They'll be able to help you find some support anyway. Sorry to hear of your diagnosis...do lots of reading and this forum is great. X

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Hi Loopy-Claire,

Welcome to the LUPUS UK community forum. As other people have already said, we have members from all over the world here now (including Australia) so you are very welcome to continue using this site. There are some lupus support organisations based in Australia if you wanted to connect with other people there though. Here are some of their websites;

lupus.com.au/

lupusnsw.org.au/

lupuswa.com.au/

I'm sorry to hear that your husband is currently not interested. We do have a booklet about caring for someone with lupus if he does feel he would like to read something. You can access it online at lupusuk.org.uk/wp-content/u...

If you need any more information about lupus, our full range of publications are available to read and download at lupusuk.org.uk/publications/

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Hi Paul, thanks so much. When I reply to someone can the whole forum see what I have written? I am hoping so, so I will ask my questions if you dont mind.

Today was very warm in Durban and I met a friend for lunch. I felt slightly dizzy, almost like a "out of my body" feeling. I was also a bit unstable on my feet which is very unlike me on flat ground. My arms are also swollen, more so the left and I am noticing more "fat lumps" appearing. I have had these lumps popping up all over in the past few years and was told there is nothing I can do except possible lipo. Is this all part of the disease? My arms look like I have cellulite and are wobbly....and finally, I have slight hot flushes (nothing like the menopause flushes) but a warmth that starts from waist up. Oh, and my moods are weird, from hating the world to thinking positive and strong like I will conquer the Aussie trip on my own to floods of tears in a heartbeat!!! Ladies....is this right/ok/normal/etc or am I just a nut case??? Say it like it is...I have a very naughty sense of humour and do not mind people telling me I am nuts!!! Lovies to all.

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Hi Loopy-Claire,

Only people who you reply directly to, or who are following your post will receive notifications about your comments, therefore you may wish to start a new post to discuss these other symptoms you have been experiencing with the wider community.

If it was warm and sunny where you live, you may be experiencing a light-sensitive reaction if you had been exposed to the sun. You can read more about this and how to protect yourself in our blog article here - lupusuk.org.uk/coping-with-...

Hot flushes and night sweats are a fairly common symptom of lupus - I'm sure other members of the community can share their experiences about these.

Mood swings could also be related to lupus or certain medications. Steroids are well-known for causing mood swings so if you are taking these for your lupus it could be playing a role. You can read more about this in our blog article about depression and anxiety - lupusuk.org.uk/coping-with-...

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Hello...I am also a grandmother DX'd last fall...I am 62...My Rheumy told me that because I am an old white female, I will not..or most likely not have a tricky case...I do not know how old your are...certainly not my age..but I am still hoping your Lupus will not do all that it seems to be capable of after reading what other lovelies are dealing/coping with. I am sorry you husband isn't interested...You look so vibrant and healthy with your beautiful new gandchild, maybe he just can not believe that Lupus is so crummy....Do you have your full DX?? Mine is Subcutate..joints rash and FATIGUE...no organ involvement is expected....It IS scary at first...What lead you to get tests that DX'd you?? Mine was a rash chest back lower arms..not face...The Dr did a skin biopsy....I didn't bother telling the drs how generally crummy I felt...I though it was just the way it was for me.....well...I hope you begin to feel a bit calmer and take care of what can be...I take Hydroxychloraquine(sp?)...I also took prednisone in the beginning for my rash......I am doing well..

My Best xx

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Hi, I have what you have, started with the pains first, then rash on arms...biopsy...all the same as you, feeling yukky etc but also kept it to myself. I feel happy and free to chat here, no one is judging or making comments! Ive had the prednisone and got creams. Fatigue is bad, but an afternoon cuddle on the sofa with my pooch is fine...often only wake up when hubby comes home to no dinner, fur babies not fed so the guilt hits me. Oh well, some good news just in.....

Just spoken to sister in law from Gold Coast, they have spare room for me so dont have to find accomodation to start, my niece goes to Uni there and hospital right there, I have only told her now about my condition and the family have already mapped out my days!!! Train is 8 mins away so I can see my baby whenever. Wow, I am feeling so blessed right now, this group, my friends here and now my brother and family there!! I know I am going to be just great.

Im 59 this year and feel as tho I have another 59 to go after today!!! Must just get my silly head to see things in a more positive light. As you say..it is scary, but hey, I am not alone!!!

This group is soooo awesome....thank you xxxxx

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Wow...what a difference a day makes!!!! I am very happy for you....Everything is falling in to place...nice..will husband be going with you??

I have to go take my fatigue nap right now..yes, i feel guilty and lazy, but I really have no choice....

Stay out of the sun!!! My Husband and I are going to Florida next week....sunblock sunblock sunblock...and guess what? Sunblock scares me...hahahah But I can not have another flair like last summer!!! so chemicals on my skin it is......arrrggg..

.very nice to meet you...we are both kind of old to start our Lupus journey...but I guess in hindsight, I was having symptoms for a while..years actually..but nothing as wild as last summer!

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Hi, my posts keep disappearing...doing something wrong here!!!! Nope, hubby not coming with, says hes got too much still to do. I will be just great, got my forum here, will meet new people and stay positive. Have a great time in Florida....SUN SCREEN, SUN SCREEN..dont forget!!!! xxxxx

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hello Loopy-Clair..hmmm....I wish I could help with your posts disappearing ...but I am seeing them..so all are not getting lost xoxo....SUNSCREEN ..I have learned my lesson....I was developing rashes years before last summer..my Dermy told me it was lichen planus..and that the sun helps...YIKES that was wrong...guess she thought I was to old to consider Lupus... SUNSCREEN for you also...and hugs to that new little beauty grand-baby!! Xx

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