Hello fellow members. It was a total surprise for me to have a positive result for ADNA which confirmed me having lupus. My kidney function was acting up, I have been one fatigue lady for months, and my skin rash of 2014 was one to forget. As all of this came about, my fatigue was also increased by out of breaths episodes which meant my heart mitral valve is also damaged. All of this was overwhelming and my team of doctors and I are working hard to define the next steps. First of I was out on Plaquenil which almost instantly reduced my constant fatigue.
Next week I get check ups for my heart with a stress test, a TEE to see the heart from all angles (eco), and soon enough I’ll probably have a kidney biopsy to confirm if their damage is due to lupus or not. Go figure they still have to test Me!
Still. Having these results in which the doctors are mind boggled makes me wonder a.lot. I’m mainly worried that I also have the lupus anticoagulant and that causes you to either bleed too much or have clots. So far this is under control and I haven’t had any other flare ups so far.
I hope my journey is being in company of those will will understand my daily struggles and for me to also learn about such wide array of symptoms that come with this awful diagnosis. That’s all of you in this group.
To top it all off my boyfriend and I broke up a week ago. Though he’s also sick and disabled, unfortunately he didn’t know how to deal with me and MY sick self. That’s how lupus can change your life! How did it change yours?
Oh man, that sounds really rough. I’m really sorry to hear about all the diagnosis’s and your boyfriend. Hopefully your testing next week goes well. Good to hear no other flare ups too, that’s always a nice thing. Lupus can for sure be disabling, and it will change you. For me, yea it was life altering, but it’s all on how you look at it. I have days where I think “if I wasn’t sick I’d do this,” or “I used to do that, I miss that.” It’s not about what you can’t do. It’s about what you still can do to live your life and achieve your own happiness.
Thank you for the comment. It’s so true what you say that it is about what we can do. Keep on fighting girl!
After years of specialist and mis-diagnosis and dead ends getting a Lupus diagnosis came as a relief because finally I had answers, then it came with shock and depression. I have constant days I think “why can’t I do this anymore”, “am I ever going to feel better”. I find that on my good days I do way too much knowing good days are few and far between. I end up stuck in bed for several days, but to me for that brief time I could feel like my old self again made it worth it. I am not the same person physically or emotionally since my disease began. My out look on everything has changed. Some days I spend trying to figure out the person I am now. @borealis commented on one of my posts the other day. She said it perfectly, others will either understand or they will not. And that is life. I am beginning to see things positively now, because after all things could be worse. Keep your head up