Just an introduction

[xechoo]

Hi everyone!

Hope y'll doing just fine. Let me introduce myself. You guys can call me Xechoo.

I was diagnosed with Lupus 3months ago and am 25 years old.

I still can't adapt with my lupus, i feel so hard sometimes to face the symptomps. Since the last month i am so lost, i have no clue how to deal with it. My hand start shaking badly recently, and am out of breath sometimes. I feel like i need moral support. I feel that no one understand me🥺🥺

Thanks.

Sending my hug...

[Oshgosh]

welcome to the forum.I’ve found it useful since my diagnosis.I have found lupus really confusing,difficult t understand. There’s loads of support/ information to help l

[xechoo in reply to Oshgosh]

Thank you! yes am so confused rn about this disease, the symptomps are come and go easily which is so annoying

[MonicaT]

Welcome Xechoo. You have come to the right place here. You will get lots of support and advice here. Look after yourself.

[xechoo in reply to MonicaT]

Hey Monica, Thank you so much!

[HazelW]

Where do you live ? There may well be a support group running in your area . Look on Lupus UK website. These groups hold get together and are very supportive. Good luck with your progress . I hope you get the support & help thy you need xx

[xechoo in reply to HazelW]

I live in Indonesia rn... big thanks!

[HazelW]

Oh . Long way away 😀 Hopefully you may be able to find a support group out there,but , failing that, stick with this forum - you'll get lots of support & information from people on here .

[xechoo in reply to HazelW]

yes it is. But thankfully i found this forum. Sometimes i just need a support from people who trhough the same condition.. its feel better tbh

[BrigidsFire]

If you are out of breath ask for a CT of your lungs. Lupus can affect various organs, so the sooner any damage is picked up the better.

It has damaged my lungs and I have quite bad scarring (fibrosis) now which can’t be mended.

[xechoo in reply to BrigidsFire]

Iam sorry to hear that🥺🥺. Yea my appointment with my doctor is in 3 days, so i will tell my doctor first and see what is the solution. Thanks tho for replying my post! really mean a lot to me

[Tiggywoos]

welcome to the group !

It’s really hard when friends or family say unhelpful things ☹️.

This is a lovely group packed full of information by people who really know their stuff ! Best thing you can do is keep good notes about your symptoms and photos if needed . We end up having lots of appointments and it’s so easy to get overwhelmed and forget what has happened or changed .

You take care 😘xxx

[xechoo in reply to Tiggywoos]

OMG, that is what i went through. Like a week before appointment i had so much question and symptomps to tell my doctor. but the d day i forgot everything what to ask and to tell my doctor.

Iam starting take notes since last week. Big thanks! and keep safe!

[Tiggywoos in reply to xechoo]

Honestly we have to treat our illnesses like a part time job 🤓. The most IMPORTANT thing I’ve learned is to be kind and caring to yourself . Quite a lot of people on here have illnesses that over lap so if you’ve ever got a question it’s worth posting on the other forums like scleroderma . Other forums aren’t as active as this one but you often do get a good response from at least a couple of people xx

[xechoo in reply to Tiggywoos]

Yes you are right, i am trying to understand the sign that my body give me. I need to understand exactly what food i need to not what i want. I found this forum is works for me. I got some respons from some people including you. Its mean a lot for me. Big thanks! xx

[Tiggywoos in reply to xechoo]

Ah you’re very welcome 😊. Everyone on here is so lovely and you’ll fit in perfectly xx

[redredblue]

Hi Xechoo,

Welcome! I hope you find what you're looking for here. It's super supportive and everyone's happy to offer any advice they can

[BeingStrong]

Welcome Xechoo to the group. It does take some time to adapt to your diagnosis, try not to be too hard on yourself. It does get better with time.

Sending loads of hugs. Take care

[ijeasike]

Hello xechoo,It is difficult to adapt to symptoms of Lupus. It will take awhile for you to accept your new normal. But you will be fine. You will find things that that work for as you go along. Listen to your body and have a rest when it says rest. This is a very good support group. So you can ask question about things elated to your condition and people will share their experiences. Take care.

Ije

[Wytchylady]

Hi. It takes time to take it all in. The best advice I can give is be kind to yourself. You're in the right place. Lupus UK was and still is my lifeline. X