My Lupus and me

[Button84]

Hi All

I’m new to the amazing lupus community. I have just recently been diagnosed with Lupus, but I have lots of experience with the disease as my mum suffered from severe lupus but sadly passed away when she was 41 years old in 2001. Please do not feel I have mentioned this to scare anyone as I know everyone’s experience of the disease is different, I merely mentioned this because I have experienced the disease from both sides.

I feel my family are now comparing me to my mum and believing I will be going down the same disease progress as she did, which will not be true but I also appreciate they are scared.

Thanks for listening

Jenna

[Hidden]

Jenna, welcome. I am sorry to hear about your mother, that must have been rough, and still is I am sure. I am glad you realize your fate is your fate, not her’s. There is research in genetics that says that even identical twins don’t necessarily get the same genetic diseases. That what we eat, and our environment play a big role in turning on or off bad and good genes. All my best to you and you will find this site a great comfort as there are fabulous people here.

[Button84 in reply to Hidden]

Thank you Brookesidecourt.

Lupus is a lonely disease without support, so I’m glad to find a support group that will understand.

Xxx

[Hidden in reply to Button84]

👍 I was talking with a friend a couple of days ago. She had a double mastectomy and finished chemo last July. She knows I’ve been going through something, but I never mentioned anything to here about it because she’s been through enough. Anyway, the other day it got brought up again and I mentioned that the doctors had me enough testing me for Lupus, are calling it UCTD, but want to check me for Sjogrëns (so, is that then MCT? Or overlap?) Anyway, I was surprised when she asked me what Lupus was. She said she’s never heard of it. I was surprised.

It is lonely. A) a lot of people don’t understand what it is (do we? Do the doctors?) B) you miss out on a lot because of flares.

All my best🙏.

[Krazykat26]

Hi Jenna 💐

N a very warm welcome from me!!

U have definitely come to the right place to find out about all things autoimmune!!

As u probably already know lupus affects each n every one of us differently.

When I was diagnosed in 2017 I'd never even heard of lupus!! But having been here for a while now I believe that my mum may have had it..but it was never diagnosed..she was type 1 diabetic n had real problems with a rash on her face which I now know is the Malar rash!!

Have u heard of the spoon theory? It's a story by a woman called Christine (can never remember surname sorry), but if u Google spoon theory you'll find it. I found it helpful to show this to my family in order to explain how it is living with lupus.

Whilst I have some similarity with my mum's condition..ie problems with ulceration on my feet..we vary in other ways..she's passed away now..she died at 68.

Lupusuk is a wonderful resource n have loads of info on how to live with it n plenty of advice on how to manage your symptoms..n of course we're all here too!! This is a fabulous community!! 🤗🤗

Kat 😽😽xx

[Button84]

Thank you Kat.

I will have a look at the spoon theory you have mentioned.

It’s very difficult for my family to separate my lupus to what my mum went through and I know that is only human nature and their concerns.

I’m sorry that your mum had health problems also, I can appreciate how difficult that must have been.

Jenna Xxx

[NeuronerdDoaty]

I have one suggestion. It’s not ‘my lupus’. I’m a person with epilepsy, lupus and migraine. It’s not ‘mine’. It does not define me. I have my grandkids and kids and parents and career and my friends and my dog and my house. A disease in my body latches on like a leach but it is not ‘mine’.

Words are powerful.

Welcome 💛💐

[Button84 in reply to NeuronerdDoaty]

Thank you, you are right they words are powerful

[Spotty-ewe]

Hi Jenna,

Welcome to this wonderful community!🤗

I was diagnosed with SLE 6 years ago but only stumbled across this forum during the summer this year. Joining it is the best thing I’ve ever done. 👍🏻 The support, the advice, the knowledge and the humour of others going through the same thing as yourself is so helpful and uplifting. I’m sure you’ll find the same! 🥰 Spotty 💕