Looking for new Lupies for mutual support and understanding!

Hi there, 

I'm Suzy, I'm 23 and I've had Lupus for 12 years, I was diagnosed when I was 11 and was in the last stage of kidney failure. I was diagnosed with CNS Lupus this year after years of symptoms. I also have Fibromyalgia, an underactive thyroid and a few other things. I'm having a massive flare at the moment and will be starting methotrexate next week after trying and failing with mycophenalate. I know it can be quite lonely sometimes dealing with the fatigue and pain and it would be lovely to chat to other people who understand! Please feel free to send me a message, I'd love to hear from you 

Suzy x

4 Replies

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  • Hi Suzy, please hop over to our facebook page and post a message there which I'll be happy to highlight on the page: facebook.com/StThomasLupusT... People are very good at responding to requests. Also if you want to e-mail anyone my e-mail is fundraising@lupus.org.uk (I have had lupus for over 20 years) also we have a free nurseonline service if you have medical questions: lupus.org.uk/online-help/on...

  • HELLO I HAVE 49 YEARS BUT SUSY YOU A VERY YOUNG PERSON IS THE SITUACIONPOR THE PASSING THESE ALSO HAVE LUPUS INSUFICIENCIUA REANL STADIUM 2 AND EPILEPSY DUE TO ILLNESS. I HAVE THE SUPPORT OF MY FAMILY BUT SOMETIMES I FEEL DEPRESSED BECAUSE PAIN phatic SOMETIMES NOT LET ME HAVE A GOOD QUALITY OF LIFE. BUT WE MUST COPE WITH THIS AND TRY TO LIVING WITH LUPUS D THE BEST WAY. I LOVE THE SUN AND I CAN NOT TAKE IT, IS ONE OF THE MOST STRANGE THINGS AND MANY MORE THINGS. FOLLOW ME LIKE TO CONTACT YOU IF YOU WANT TO SPEAK WRITE ME. I am BOGOTA COLOMBIA. A HUG. USING GOOGLE TRANSLATE I AND MY ENGLISH IS VERY REGULAR JEJEJE

  • Hello! It is lovely to meet you!

    Are you Colombian? I speak a little bit of Spanish but I'm still learning. I have only been studying Spanish for a little while.

    I am young to have lupus and I was diagnosed when I was 11! I don't know many people who are so young to have lupus.

    I'm sad to hear that you suffer so much with lupus, and that you have a lot of pain :( I hope this gets better for you.

    I also love the sun but it doesn't love me! My skin burns easily and I get blisters after 10 minutes of sunshine. I wear sun cream everyday.

    I hope you are feeling good today and you are happy. I am glad you have a supportive family, it's very important to speak to people who understand!

    Sending you many hugs!

  • Hello Bellaflowe.

    Like our lovely Administrator, I've had S.L.E. for 20 years so am very au fait with the ups and downs of respites and flare ups. You have my deepest sympathy and I hope your latest flare is under control pretty sharpish.

    Any encouragement I, personally, can give you please let me know.

    My kidneys were involved in my initial onslaught and my thyroid, which went overactive, was 'killed off' with a radio-active drink so I'm now considered underactive. I have two replacement knees, two optic lens implants and had my left elbow replaced 4 months ago and I'd still give anyone a 'run' for their money. I use 'run' figuratively speaking - my knees don't 'run', they do more of an Olympic speed walk! - AND I'm nearing 67 years old.

    Touch wood, I haven't had a proper flare-up for about 7 years now, so it shows there can be light at the end of the tunnel.

    Keep laughing, (difficult when you're screaming with pain I know) but it makes you feel good, something about endorphins and seratonin, and keep as positive as you are able under the circumstances.

    Good luck with your treatment.