Tuesday, November 15, 2005

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That's my daughter teaching. The nose ring came out gigantic, but otherwise, the picture captures how much she enjoys teaching.
I don't have much to say today so maybe I'll paste in a letter I wrote to a young woman who asked about the effects of lupus on my life.

Effects on your lifestyle

I just retired ten months early losing about $40000 because of Lupus. I got so sick for so long, I couldn't imagine returning to work; my husband and children urged me to stay home, and I did. I regretted losing the money but I have enough and it's important for me, with lupus, to follow a path of less stress.
I'm a professional artist; I paint everyday, but it's just too stressful and physically exhausting to participate in exhibits. I mostly can't tolerate gallery owners, but even with the ones I like, it's too hard. I love my work, love to celebrate it, and am thrilled by other people enjoying and buying it. I'm in a quandary now, ultimately because of lupus, as to how to show my artwork beyond my website. Because our house has essentially three floors and my balance is poor, we're considering moving to a one-story house which may or may not offer a better opportunity for exhibiting. My life-long goal had been to open a gallery, but that's just way above my abilities now. I've down-sized my plans but I haven't yet a good idea of how to manage and exactly what I need.
Years ago, I had an opportunity to pursue a FREE Ph.D in Therapeutic Recreation, which I wouldn't consider now if I had the energy, but at the time, I wanted to do it, but had to turn it down anyway. I didn't have the physical stamina to work and study too.
Effects on your family
I think my family worries about my health and my children do more for us than they might otherwise. Most of the caring for me when I'm sick falls to my husband though. He's been the chef, the shopper, laundryman and bookkeeper here for years,.
Effects on your diet
?? I'm fat; I've never weighed so much and it's a terrific struggle to lose a half pound.
Effects on your stress level
Pretty much every time I started a flare, I freaked out. I've been terrified the first three times of each type flare and sometimes also with new scary symptoms. In July I was titering down prednisone from a flare in May, hit 3 milligrams, and went into suicidal depression. This is not unusual with prednisone, I discovered, but I believe I had a nervous breakdown. Laying in bed, too depressed to sit up, walk, talk or eat was more than I could handle. I usually self-medicate with visits and consultations with my doctors. Not only was no one available when I was finally able to call, none of my doctors could appropriately address what was happening. I had to wait almost a month and a half to see a psychiatrist who knew exactly what was doing and how to handle it.
Effects on your emotional state
Other than when flares occur and my somewhat heightened response to stressful situation thanks to a daily dose of prednisone and some mild brain damage, I'm a happy camper. I'm thrilled being retired, painting and working on my website all day. I have a wonderful family; I'm proud of both my children and they both tell me they love me. Our children are 18 years apart. I had my daughter at 17, started art school at 23 and promptly began to get dizzy, I believe from the shock of seeing gay women on motorcycles and stuff. I'd led a relatively sheltered life.
Lupus really hit though after my son was born in 1983. I need to say my son Brian has been a joy for me every day for twenty-two years. There's is no pain that would ever change that and nothing emotionally that connects Brian or my pregnancy with Lupus. In 84 and 85 I had very bad flares that left me with aphasia and the serious need to change jobs. Eventually I did switch to working in Center City Philly at a job totally unrelated to my education--both BFA or M.Ed. but the position allowed me two days a week to paint and a much more relaxed atmosphere. That was the 'career' I left in August reluctantly.
My real career is lots of fun, but I do wish my hands wouldn't shake. Sometimes it's difficult to get lines right, and I have trouble with the pointer on the computer. I love wearing earrings too and they're a pain to get through my little ear holes when my hands are trembling. And the last annoyance is finding substitute words. Thank goodness people don't think it's odd that I say 'thingy' and 'doohickey a lot.
I hope all this helps you. It sure is a lot of words



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