I really hope I can go07/13/2008 05:07:59
It's already July... I didn't sleep well last night that happens. I'm giving a friend a party next week, It's somthing I'm really looking forward too, I really want to do this.
Naomi, was one of my husbands secretary as was her mother and sister. Naomi is just a sweet heart and it is a custom in my religion for a bride and her husband to be given a sheva berachot (seven blessings) it's a party every night for seven nights, after a couple is married. I'm doing the fourth night. It's hard to plan a party this large 20 people, to plan it with unpredictable health, well, I really want to do this, to give something nice to a nice person, to do somthing thats part of my culture.
I think thats one of the first thinks that was a real loss to me. It was so hard to entertain, to plan anything, to go any where, not knowing how my health will be from one day to the next. It has taken it's toll on some of my relationships. In the begining, after I was first diagnosed I knew I'd have to change my lifestyle. It's hard for friends even family to understand just what lupus is and how it affects your daily life.
I've learned for the most part to break things down. If I want to go out at night I know I need to take a nap in the after noon or rest, to give a dinner party I start days before and sometimes I can do all the right things and still not be able to do what I want. My best time of day is early morning I fade by 3 in the after noon.
I am an observant Jew. I keep the sabbath,( sundown friday to sundown saturday) I don't work, drive , watch t.v. and I walk to Shul ( synagogue) I love walking to Shul, meeting new people, going to someones house for lunch or having people over, it is so much a part of who I am . It's hard not to be a part of what really makes me, me. I can't walk the mile and a half to Shul very often, so I do miss out. Sadly not everyone understands why.
I look forward to Naomi's wedding, I hope I can stay the whole night, dance just one dance and give her a wonderful party after. A memory for her and me.
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