Nice to meet you, everyone.

[DaddyzGrl]

I am a black Mother of three sons, 18, 15+, and 13+. I am new to the world of Lupus. But unfortunately I am not new to the discomfort of its presence. I am trying to connect with people who have been where I am for advice and support. I feel so alone. I told my children and initially they were scared. They thought that it is Cancer. Other family members just think that I am imaging what I'm experiencing. I cry often because of the pain, the swelling, the rejection that I feel, and the inability to do what I used to be able to do. I feel like I am always on standby. I am sick all day long all the time. Just because I look like nothing is wrong, I get treated like what I am going through isn't real.

[Kevin53]

We are all here to support each other. You are not alone. Best wishes Kevin

[Kevin53 in reply to Kevin53]

Welcome

[Tess_Little]

Hi DaddyzGirl.....I've also recently joined the forum and know how you feel. Have you at least had some understanding and empathy from your doctors? It can be so maddening when family/friends don't "get" what you're going through and then if you also hit a brick wall from the medical community, it can be soul destroying. I hope you feel better soon and get some support and reassurance here. I know exactly how you feel x

[misty14]

Hidaddyzgirl

Welcome to the forum, I'm sure you will feel better knowing your not alone. A diagnosis of lupus is tough, turns your normal life upside down and it will take you a long time to come to terms with it so be kind to yourself!. I do hope they have started you on treatment. You will improve once it starts working. Can take awhile!. In the meantime, ask us anything on here and keep us posted on how you get on. X

[DaddyzGrl]

Thanks for the kind words. I haven't started any treatment plans yet but I will be going back to the doctor in two weeks. I have a very compassionate doctor, at least so far. Maybe too early to tell since this will be our second time meeting. But she seems genuinely concerned and she listens and she is patient with me. If my regular pcp had not been on maternity leave, leaving a substitute medical representative colleague, I probably wouldn't have never had these results. Because I had been complaining of different things for a while. This time was very different. The day that I saw the substitute, I was in so much pain that I was making baby steps, literally, and almost crying like one too. That's when the positive ana was found. Two weeks later, referral appointment to rheumatologist. The rest is an overwhelming and painful history in the making. I wish you all the very best as we travel through this process.

[Kevin53]

Try and keep a diary of good days and not so good. Make a note of any questions you wish to ask the doctor, this will get more out of your appointment. Best wishes Kevin

[DaddyzGrl in reply to Kevin53]

Thanks for the information. I will be sure to start a daily journal. Some days I feel so horrible that I don't feel like doing that. Then all of the days pile up together and it's hard to tell which way is actually up.

[Hidden in reply to DaddyzGrl]

Hello and a warm welcome to you. I'm hoping that once you start on medication things will improve greatly for you. Glad you're in good hands. Take care and keep posting.

[DaddyzGrl in reply to Hidden]

Thanks. I am so happy to have a community of people who have experience in what I am going through. I am talking to the choir actually, because many people will be able to help me better understand because I am new to this and lack the knowledge that they have. I am glad to hear from you. I hope that you are doing well, and if not, I hope that you will soon.

[sam7079]

Hi Daddyzgirl

I was diagnosed nearly one year ago, and it literally feels like yesterday! Confirmation of SLE is the first step in understanding the past you and the new you! My children (although younger than yours), were also very concerned at first, but now that I'm less ill, they are very positive. It does get better. Once your medication starts, things will improve. I'm lucky that I've had minimal side effects from the vast array of pretty pills I currently take.

Keep reading this site and keep posting.

[DaddyzGrl in reply to sam7079]

Thanks for the encouragement. I really appreciate it and need it, as you are aware, more than ever. I hope that you are doing well. Best wishes.