New diagnoses of lupus and I feel alone

ashhhhh26ashhhhh26 Member New Member
Hi I’m ash  I was just diagnosed with lupus a few weeks ago after over a year of being tested for things I didn’t have. It’s really been a struggle and honestly I’m scared. I’m not really a forum person but my boyfriend encouraged me to join a group and reach out to not feel so alone. If anyone has any advice I would really appreciate it or just finding some people who understand what I’m going through. I’m here for everyone too.
Also I’m sorry my post is so scattered lol 
I hope everyone who reads this is having a good day and feeling well ♥️

Comments

  • lupyAngielupyAngie Member New Member
    Hi, Ash! My name is Angie and I am 52 with 12 years of lupus, fibro, Sjogrens Syndrome,  and rheumatoid arthritis.  My daughter is 20 and has had the same diseases since she was 14. We have experienced one heck of a journey together and have lots of helpful information and encouragement to share.  With lupus you mostly have to take life one day at time.  What symptoms or physical issues have you been dealing with the most lately?
  • POPPANICKELSPOPPANICKELS Member New Member
    Hello ash, I’ve been recently diagnosed as well after being lost and suffering for a few yrs before finally being diagnosed. Angie is correct. I’m still learning and feel lost at times but one day at a time is huge. You just don’t know how you’re Gona feel from day to day.i feel lost with you but I know with time,education,and faith, I will get a grip on it-just as you will!!!! I hope you’re doing ok-have safe holidays!!!!!
  • XtieJayneXtieJayne Member New Member
    ashhhhh26 said:
    Hi I’m ash  I was just diagnosed with lupus a few weeks ago after over a year of being tested for things I didn’t have. It’s really been a struggle and honestly I’m scared. I’m not really a forum person but my boyfriend encouraged me to join a group and reach out to not feel so alone. If anyone has any advice I would really appreciate it or just finding some people who understand what I’m going through. I’m here for everyone too.
    Also I’m sorry my post is so scattered lol 
    I hope everyone who reads this is having a good day and feeling well ♥️
    Hi Ash 👋 I'm Crystal. I just joined this forum today so I'm a couple months late. I agree with the others who replied to your post and that it's important to take everything one day at a time. It's okay and normal to feel scared, frustrated, and unsure. Even though we are pretty much a bunch of random people on the internet, know that you are not alone. Everyone's lupus journey is different so what may work for me might not work for you and vice versa. Which is completely fine by the way!

    Some advice I can suggest to you is to know your limits. Figure out how long you can go doing regular activities for example cleaning, or cooking before you start to feel tired. I find that knowing a general time frame can help plan your day out a bit better. Hopefully that makes sense and I'm sorry if it doesn't. 😅 Another piece of advice I can suggest is to listen to your body. Take breaks when you need to and don't push it beyond it's limits. If you're anything like me, I feel worse the next day if I push myself too hard the previous one.

    I hope you are doing well! Know that you're trying your best and remember to take it one day at a time!
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