Oh my! Please please please do not feel alone!

I am 25 and was diagnosed a year ago, so I feel very similar to you. My SLE is all heart involvement, but since age 4 I was always told I just had a heart condition. When I was finally diagnosed with Lupus I couldn't believe it... how had the cardiologists gotten it wrong for 20 YEARS??!!?

My family was happy about the diagnosis because it "explained why the surgeries and heart medication never worked," but to this day I still question my diagnosis sometimes. 🙊 Do I really have an autoimmune disease? Are the cardiologists just tired of dealing with an issue they can't seem to solve? The questions go on and on.

When my Rheumy first did blood work during a pericarditis flare, all of my levels were abnormal. She said there is no way it couldn't be Lupus; the diagnosis was instant.

As I said, I'm at 12 months into the diagnosis and I feel I am just now beginning to try to learn about this disease. I'd recommend The Immune System Recover Plan (book) by Susan Blum, M.D. It does an excellent job of explaining some of the things that are happening in your body, and she tells the story of how she has placed her immune disease in remission for a long time. I found the information helped me not only better understand what Lupus is, but also feel motivated to take steps to help myself.

When I was first diagnosed I didn't tell my boyfriend until 3 months after the diagnosis and I didn't tell my family or friends until 2 months after that. It's been 2 years and I still sometimes refuse to ask for help.
The only time I admit I need help is on the days I have trouble walking. If I can walk on my own I try to avoid asking for help. There have been times I've been in so much pain I was crying, but I still wouldn't ask for help. It makes my boyfriend so mad because after 2 years he can tell when I'm hurting. I'm not good at hiding it from him anymore.
He's constantly telling me "you have a debilitating disease Jessica ask for help if you need it!!" I hate asking for help though...
I hate being in pain. I hate needing help. I hate that I can't go to the gym and work out when I want to. I hate that I can't take my daughter to the park without needing to rest for 3 days afterwards. I hate that I can't freaking work a full week anymore. I hate that my boyfriend and I used to be able to go to concerts and local shows every weekend but we haven't gone in a year because all of our money goes to medical bills.

It's normal to try and deny it. It's normal to fight yourself and pretend you're not sick. It's normal to want your old life back and to resent the life you're leading now because of your illness.

The sooner we stop grieving on the past us and what we used to be the better.There is no going back. It's far better to Put your big girl panties on and begin to fight. Be. Positive. Be realistic.Be kind to yourself. Know It's not your fault. All we can do is give advice and pray for you. We speak from experience because we all do deal with it daily. Be yourself in moderation💪💜✊💯

Amen Jessica!!!!!! Yes I would almost kill for my old life back.....i just don't think about my old life..at all or I'll get depressed......as my Dr said "don't look back you'll never be the same again..only look forward..today is a new day and tomorrow is yet to come.This will help you adjust to your new lifestyle"

. I will never forget those words...

I think your where l was when l first started dealing with Lupus , l looked at it as the enemy an we were fighting a battle , l don't know how long exactly l fought against myself , but l eventually saw a lady at my clinic who was a counsellor , but also a Lupus sufferer , she helped me just by talking to me for 20 minutes , since then l have stopped the fight and just accepted Lupus but ; will never surrender !!