Parenting and Social life with Lupus

Since recieving this dx, my moods have floccuated from content having a dx to upset for having this dx and then to hopeless for having this dx... Then my teenage daughter is feeling upset because I spend time in the bed and we are not able (only recently) to go out as my body is stiff and sore at times.

Is their anyone else out there whom can give me advice on how to live with this dx and not let the feelings take over my life!?

Very nice… Thanks for the thoughts.

I feel your pain, You need to rest, today my kids are off for a long weekend and I needed sleep I was so tired and I said to them I will make it up to u tmo…we need our rest when out body tells us…It is hard…

I have three kids that feel the same way. Give yourself the time to recover and then socialize. Ignore your thoughts and perserver.

I have two daughters. My oldest is 21 and very independent (always has been). She is in the nursing program at university (graduates in the spring). One of her projects was to research the impact of chronic illness on a patient. So of course she picked me. We spent a lot of time going through her interview questions. It gave her a much better understanding of how this has effected me personally. I had always thought it was best not to “complain” when I was sore. But apparently having a limping hunched over mom with a strained smile plastered on was more stressful for her. I hadn’t realized but she had looked online when she was younger and had seen all the horrible worst case scenario stuff and had (in her young teenage mind) believed I was going to die any minute. I’ve learned to talk to both my girls about what’s going on with me health wise.

My youngest daughter will be 18 tomorrow. She is not as independent as her sister. We spend a lot of time together and she talks to me about everything going on in her life (even the stuff I don’t want to know about! LOL). With her it’s a little more difficult. She was dx with psoriatic arthritis so I try to make light of the pain I am in because I don’t want her to worry about her future.

I don’t go out as much with my girls but we still do movie nights at home. Sometimes we have a Disney night and they each pick a favorite from when they were little (we know little mermaid and beauty and the beast word for word!). We also play cards together. My youngest likes doing nail art so we have a manicure night every couple of weeks and she’ll do everyone’s nails. We have a “scrap book” night once a week where my mom and a couple friends come over to do scrap books and my oldest daughter usually joins us.

There are so many things you can do together even when you aren’t feeling the best. Some of it sounds a little corny… but the girls enjoy it so we don’t care! LOL