New diagnoses of lupus and I feel alone

ashhhhh26

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 ♥️

lupyAngie

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?

POPPANICKELS

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!!!!!

XtieJayne

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!

daddyferrari

Hey Ash, I just joined today too, so a little late,sorry.  Everyone has left good advice.  My wife has lupus and I help her everyday.  You're going to get tired doing "normal" everyday tasks, it's ok to rest on the couch or bed, all day if you have to!! You may have to cancel more plans then you'll be able to go to.  This disease just takes all of your energy most of the time.  Roll with it, you can't fight it, you'll only be worse the next day.  Take warm baths, relax as much as you need to, and don't listen to your friends that will tell you, "You look fine, come on!". Listen to your body, it will tell you something new everyday.  Hopefully your boyfriend can educate himself about this disease, that would help.  I couldn't believe some of the stuff you're going through and a supportive partner is great to have!  
Good luck with your challenges ahead, stay positive as much as you can, there will be days your body won't let you, just keep fighting.  

Gabriela

Hola, hoy después de una biopsia hecha a mi nieto de 1.8 años el resultado fue Lupus discoide y estamos asustados, va a iniciar estudios...es un bb  

lincon3

Hi Ash! 
How are you doing now? I have been active & strong in my life, but had various fleeting/severe/strange health problems since I was younger. I still ski (just less hours, recovery takes longer), eat great food (watch for lower inflammatory foods), walk and bike daily (it helps so much to keep moving). Mornings are rarely "clear" for me, it's true - but have worked jobs starting at 9am. Doable, but not fun for Lupus peeps! Know you have to keep care and keep moving - and you'll be able to do that with proper eating and light exercise - and remember to always rest. Keeps the inflammation a bit at bay. If you can find a support group in person near you, that may help support you in our sometimes "invisible" disease.

And BTW, if I didn't keep moving, (after my morning wakeup! lol) I'd be done. FYI, I am 58 years old - tand we have two kids - beautiful, healthy, brain able, physically able, and doing well. 

The fact that you have, or maybe later, will always have, a supportive partner means a lot to living with LUPUS. It is a hard condition when we live with someone (or have family) who is un-sympathetic or unable to digest what all this means to NECESSARY lifestyle changes. My heart goes out to those who don't have partner or family support. 

Any improvements? Have you made changes to your sleep, food and exercise to help yourself? How are you doing? How are you feeling We care Ashley, we know. ~ Dori

Willb12598

Hello Ash I'm Will and  I have been diagnosed  about a year ago we all know what you are going through and know your struggles  you are not alone

jennie_hunt

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cyndyv

Hi Ash. I'm Cyndy. I've had SLE for 35 years now. And I've  had DLE for 29 years. What everyone else has said is right. Listen to your body. Rest when you need to. Take it one day at a time. On really bad days, take it one hour at a time. Warm baths, massages and acupuncture help with muscle pain. I've always made it a goal to get out of bed every day, even if it's just to move to a recliner or the couch. The only time I haven't been able to do that is if I'm physically unable to. I found on your bad days even if you do nothing else, you'll feel better knowing you accomplished that one thing. Sunblock and a wide brimmed hat are your best friends. As are long sleeved shirts and long pants. I use gloves with a upf of 50 when I drive. Thanks to lupus I've had 2 skin cancers cut off my hand. Read up on lupus. Go to reputable websites. The more you learn the better you'll be able to help yourself. I was terrified when I was first diagnosed. Just know you are not alone. There are millions of us. I wish you well.