Sunday, December 31, 2006

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Today is New Year's Eve. Harry made lobster and the whole deal. Our daughter slept over last night and she'll be going home today for parties in Philly. We went tax-free shopping this afternoon. I'm pretty tired but I do have things I'd still like to accomplish.
To my surprise, Jerry is doing great. He's probably cured and almost ready to return home. His house was burglarized Friday but nothing was taken. Whatever the thief was looking for, it wasn't there. Jerry's been busy alienating me and my daughter. I can't bear to talk with him; he's dismissive and disrespectful. Not a great combination.
For the last two weeks, I spent the work week at my daughter's in South Philly so that I could visit Jerry in the hospital. I know it was more comfortable for him to have me there, but his comfort never translated into treating me nicely. Life is complicated sometimes.
I went through a flare of my lupus, which now is fine. I wondered what would happen to me in Jerry's circumstances. Would the hospital monitor my response to the stress? Would they medicate me if lupus acted up? I suspect not because nausea and dizziness are of little concern to them. It's the strokes and visible inflammation they worry about. I'm hoping to titrate my prednisone further, hopefully to discontinue it. I came down from twenty mgs. quickly, so maybe I can do it. I'm afraid of what could happen if I don't.
2007? I'm fifty-nine years old. I feel about forty-nine, but even fifty-nine doesn't seem too old. When I was a kid, this century seemed to loom ahead but never to happen. And then it did! Surprise! I thought I'd be old and decriped, or maybe dead by now. 2007 was unimaginable.
Uh oh, It's 2007, midnight has passed. And I definitely like Explorer 06 better than 07. Where is my filler? What happened to stuff that used to be on top? And why did they kill Saddam? Wasn't that a bad idea? But then again, Nixon died a free man and I'd bet W and his minions will too. I don't believe there's a hell, but if there were, I'd like to think people like them go there. I think of the immeasurable cruelty in this world and find it hard to believe I can be concerned over problems of such little importance like Explorer. I know it's all relative. Lupus compared to W sending thousands of kids to risk their lives and die for cheap oil or personal revenge. Saddam murdering thousands including children. Oh, and since the world is somewhat funky, and down here in absolute suburbia, not perfectly pro-Israel, I'm for Israel. Just a note. I can complain about Saddam, W, Cheney, and this guy Gene who I used to work for, and I'm a liberal, but I'm for self-preservation, which means I'm for Israel.
I read a review of a bio of Nadine Gortimer today and the author accused her of hypocracy since she worked hard against apartheid--she's South African--but she isn't 100% for the idiotic government there now. Gee, she's gotten old and she's not demented yet. Comparing myself to Gortimer, a renowned author and a Jew, I was assailed by an angry black woman at my work a long time ago. How could I be a liberal and be obnoxious? The Jewish liberality is suspect today. I think people of color are disappointed we are not still marching. But some of us are. We haven't forgotten our folks were thrown into the ovens and would be still by those wonderful palestinians and arabs. The outcast arabs may be the underdogs today but that's only because the Israeli army doesn't stand for any shit. So I'm a liberal, still against the power players of this world and appalled at the hate here that allows Americans to drown because they're poor and black, and people including children to be hacked to death in Durfur. Lupus is a little problem compared to being sent to my death by W, or chased down by arab horsemen to ethnically cleanse Durfur.
Son of a Bitch! I can't correct my spelling! Damn!


Monday, December 25, 2006

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Miserable Me and Sick Jerry

Jerry is still in the Pulmonary Intensive Care and I'll be spending another week in Philly. We had an emergency with my Jerry this week (when he took all the tubes out.) The hospital called me and my son, daughter, cousin, and I went. We read him the riot act and everybody cried. He needs the support so I'll stay at my daughter's house again this week, from Tuesday on. (I keep wondering if I should go tomorrow, but my daughter will be in New York with her friends and won't be able to pick me up if I took the train.) I'm not happy to have to go back and stay there again, but I will. Her house is at least 100 years old with steep steps and no shower mat. (I'll bring one this time, or buy one.) I can't work her downstairs TV and she doesn't have a sofa or regular chair there anyway. I have to watch in bed. And she's a vegetarian, who like me, really doesn't cook. My son, like his dad, likes to cook. Lastly, she has no computer or land-line phone. But I'm very blessed that she doesn't mind my staying. My 20 mg. flare seems to be cooling down, thank God. I'm decreasing prednisone every day, expecting to get back down to four eventually. I haven't had a "big" flare in more than a year, and I never remember how to titrate, but then each time it feels different. Later: My gut hurts. Now it seems when I eat beyond a tiny amount of sweet food, my gut gets irritated. I suspect more than sweets irritate it so I'll pay closer attention. I notice every twinge and that's not normal. Aches and pains are part of life as we age, but I get antsy about pain beyond arthritis, bursitis, carpal tunnel, and lupus cheeks. The higher dose of prednisone could be attempting to shred my intestines. And I'm just this side of lupus exhaustion.
I've been thinking about a painting I want to do when I'm home again for a while. I was thinking of doing the "little people" and designs I do on paper, but this time on canvas sort of the way I used to do. I have the painting of Dukie, our family beagle of blessed memory--and he definitely was--on my bedroom wall. I want something different, more reflective of me. Poor Harry. I'm so egocentric; it's disgusting; but that's how I am right now. (And always have been.)
Maybe I'm not so egocentric. I cherish my family and friends. And my animals. I feel surrounded by comfort, when I look at the walls covered with my paintings. My daughter advised me to put up only work that made me happy and I'm still working on it. Or I will be when Jerry is healthy again.
Later: Getting ready for bed. Seem to be packed except for morning stuff. I have a regular packing list for Harry and I. It's saved a lot of frustration. It's hard to be with Harry right now. I'm cranky from both Jerry and the prednisone--being on it and titrating it at the same time. Harry comes from a self-involved family who were rigidly against change. Unless it suited them. That was okay. Right now, his mom isn't talking to him because he wouldn't come up every Monday with her weekly money. His brother is willing to put the money out on Saturdays but she doesn't like to "bother" the brother. Harry goes up to her every week and sets up her medications. He orders them, picks them up, fights with the insurance company and the doctors. He's obtained every existing program she qualifies for. Driving up to Far Northeast Philly from Newark Delaware every week, rain or shine, is not fun and Harry hates it. But he does it. Anyway, that's his family. He idolizes his dad, but his dad wasn't exactly a great prize either. Harry gets cranky and somewhat freaky when anything changes, he has to do something new or extra, or I'm not with him. He's seriously hard of hearing and has little sense of direction, so part of his need for me is self-preservation. But another part is support and lack of companionship for three days. Men. Women usually have friends to talk with, to reach out to. Men have too little. Just football.


Sunday, December 17, 2006

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Back To Philly

This week Jaynee writes about our cousin Jerry.
From the beginning, one of the few men in my life was Jerry. He was my brother more than most brothers ever reach. He walked me to Kindergarten, and let me touch his Queen Elizabeth Coronation figures. He taught me to play chess and poker. When he grew up and lived in his first apartment, I painted his sun mural on his wall. We have shared our secrets for my fifty-nine years.
Jerry had a cold that seemed to hang on for three weeks, but that was not a surprise because he smoked heavily. But when I called Jerry this week, he had become weak and short of breath. Our compromise, since Jerry does not like doctors, was that if he were not well by Saturday, I would take him to the emergency room. When I called Friday night at midnight, he was worse, and my son and I drove up to Philly. At Jefferson, he was taken immediately into Triage and eventually moved to the Pulmonary Intensive Care Unit. Pneumonia had lodged in both lobes of his lungs, his blood pressure and hemocrit was close to not functioning, and his stomach was full of blood. Doctors and nurses kept telling him he was very sick. Up in the intensive care unit, suddenly he could not breathe and the docs installed a ventilator.
I have never seen Jerry helpless. Jerry and Brian talk endlessly about poker, math, and science. I am very proud they are both brilliant. Brian’s hair is long like Jerry’s. He went to Drexel University like Jerry and is as much like Jerry as he is like Harry, Brian’s dad. I am praying endlessly for Jerry’s recovery. Even at fifty-nine, it is a shock to find neither we nor those we love are immortal. For me alone, I do not want to give Jerry up to eternity.


Wednesday, December 13, 2006

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This IS an especially busy and stressful time of the year. The roads and stores are clogged and slower. There is pressure to have everything including presents and a clean house ready. I told my girlfriend today, who was overwhelmed and saying she had to CLEAN, just to dust where people put down their food. That's one table. Nobody even notices any of that unless their shoes either stick to the floor or it's crunchy underfoot. I think it's fine but people have complained about the animal hair from my furniture and car. I guess it's not fine, huh? But especially for people with an autoimmune illness, it's important to take it easy. Stress can cut us down to size in a New York minute. I ate somewhat terribly today and that tells me to write down the yucky stuff that made the trip to my stomach. Ah, well, trying to lose weight is a struggle, especially in the beginning.' I'm feeling hopeless over food. Not only did I binge on raisins and nuts when I was hungry this afternoon, but I ate ice cream and cookies after dinner. The dinner was reasonable but Harry buys ice cream--for himself--and it's like a beacon to me. I realize now that once I eat sugar, I want more. That's where the cookies came in. I purposely froze them in the hope I'd leave them for company. That's still my hope and if I hit them again, I'll give them to the kids nearby. Or I'll try.

Sunday, December 10, 2006

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I joined this new group to lose weight. It's good for me to have to write down what I eat. Except that this group seems to be made up of sweet, friendly ladies who all cook. I don't. Harry cooks. I can't even navigate the page and don't have the patience to learn. That sucks. Their diet page assumes people will follow their or a normal diet and I don't. I eat whatever Harry makes or whatever is closest if he didn't cook. I kid around that if I made Thanksgiving, we'd have the Thanksgiving hoagies. Harry is appalled by some of my food suggestions and I guess that's why he shops and cooks. I have to get to bed because I need to be up early tomorrow. My little Autumn is sitting happily on my desk. She likes to be with me now. But as much as I love to watch my own words form on the page and watch Autumn sleep, I have to go.


Thursday, December 07, 2006

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Symptoms That Aren't Going To Show Up For Tests

Here are Moon and Autumn, my kittens. Only Harry, our daughter and I ever see Autumn because she is so shy. So here is her photo, to prove she exists!
I'm still under the weather and I should be in bed. This is barely a flare, just the Lupus fatigue. I went with Harry to Philly today to see his mom's social worker and go with Harry to his doctor. His doc thought that my docs should be taking my painful feet seriously. He urged me to switch doctors. Tomorrow is my pulmonary function test at Christiana Hospital. What worries me is that I'll be fine for the tests and the problems I have won't show up. I want to know what is wrong. I believe whatever it is isn't serious; it's just slightly beyond normal. But what is happening?
I have procrastinated finding doctors down here and even before that, making a list of my previous and present symptoms. I have old lists from the times I desperately needed them but none recent.
I could just stay in my house, never stepping off the property. I'm happy here.


Wednesday, December 06, 2006

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A Lupus Day & The Art Scene Sucks

Another Lupus flare hit, but this one isn't quite overwhelming. I'm feeling under the weather. This morning, when I was getting ready to meet the two Delaware authors, I realized I was afraid I'd faint if I went out. I didn't feel light-headed, but I knew fainting could be on the horizon. So I looked for their phone numbers for hours and couldn't find anything. Later, I was able to manipulate the downstairs telephone, and got one of their home numbers.

With me, it's usually aggravation that raises my blood pressure, then causes inflammation in my nervous system and "Voila!" Lupus flare! I have serious tests coming up beginning Friday for a couple of long-time symptoms. One is my swallowing "down the wrong pipe", which is apparently dangerous. For years, I've been coughing regularly even when I'm just swallowing saliva. But the test won't show anything if the swallowing thing doesn't occur when I'm being tested. Isn't that the way of things?

Another test coming up is for my shortness of breath at any time. That's also "sometimey". It would be nice to find out what causes these two annoying events; but I definitely don't want to take any more medications. My body is now addicted to at least six or more serious medications. I am concerned as I grow older about the side effects or what will happen if I need to suddenly come off the drugs because of another problem.

I'm surprised I can type. I was too tired to try earlier and it's an effort now. Music always helps me. I put on Putumayo (World Music) music from all over Africa. It's so soft, like folk music here except I can't understand the words. It's beautiful.

I'm sitting here at my own desk, in my own room, looking out my windows and at my artwork. I've been reading The Lost by Mendelsohn and one piece of his schtick is class, education, and style. Nearing the end of this book, that crap is turning my stomach and also bringing up the questions, "What am I doing? Where am I going? Is backing away from everything I don't like okay? Am I required by some higher ideal to show and sell my artwork? Is looking like a frumpy weirdo not okay? Am I somehow less because I am not upper-class and hanging out with college professors? (That's total bullshit.) But the question that rankles is, am I shorting myself or my children by not showing my artwork?" I always enjoyed the attention in my openings and I loved being Artist of the Year and having articles written about me. I felt like a child looking for acceptance, validation, going to galleries, seeking their backing. Actually, I'm pretty sure I could go back to B-Square and she would show my work but I don't want to be bothered. And I loathe the phoney art scene. No matter what I say, I won't be approaching anybody to show my work. My friend Alexis will be showing it in late Winter in Philly and that's enough. I was forgetting about how the nice young woman at B-Square insisted I frame my work one way and hung ones I didn't want up leaving out ones I liked. And the way she hung it, I thought was bad. I was right. And the gallery before that hung it fine but I had problems getting the work back and when I did, one was missing and the frames were damaged. Before that, I'd have to look at my information because I forget.

Being an artist, being able to draw something I like from my heart, is a gift, a blessing. I thank God, never forgetting how blessed I am. I am not marvelously talented; that's not necessary. What I have is enough. My artwork has brought joy to my life, all my life. No one has to endorse my artwork for me to love it. No one has to buy it. All that needs to happen is for me to do it.
P.S. I destroyed that painting. First, I accidentally put my foot through it. Then, after I repaired it, I decided to redo Gaiea, and that was the end. The pictures of the painting are what I like. The painting I really wanted to use today is an old one from 1974. It's a complex painting, but on maybe one third of it, I'm painting. I have no photos of that painting.


Friday, December 01, 2006

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Anger As a Positive Emotion

Here's the parrot illustration I did for the "Delaware authors".

Today is my birthday. I have to write later because Moon kitten just let me know he wants me.

Later...I mostly cleaned today because we have friends visiting tomorrow and Sunday, plus I like when the house is clean. When I don't clean, it gets to be too big a job and daunting. I had the little robot going and I learned how to clean it. It did a decent job and my hope is to leave the Family Room to the robot. I also put together the cuckoo clock with Harry's help. Moon Kitten thinks it's a bird teasing him. He sat there staring at the clock just waiting for that little bird to come out again.

For the time being, the house is virtually finished. We need to replace our quilt and I want to make some orange curtains for my office. Also a little screen for the kitty litter in the sun room. (They need privacy, right?)

We went to Deep Blue which was rumoured to be a fancy restaurant. My food was very good but the restaurant had problems. It was big, too well-lit, with no atmosphere. Service was in high gear--meaning too fast. No sooner had we ordered soup than it was there. I loathe restaurants where the clean-up staff circle the room like vultures waiting, watching diners for the fork to go down for twenty whole seconds. I don't understand why a restaurant would set that up unless they're trying for speed dining, which this seemed to be. I was very disappointed.

Tomorrow my son is taking me out to buy a robe for my birthday. He's a very sweet boy. Too sensitive I guess. Can't imagine where he got that. Ugh. I still am hurt by the three people I used to talk with at work--who I didn't especially like--didn't call me after I retired. What is that? I would much rather watch television or cut my toenails than talk with them. They were the only people at work with whom I shared any interests. (The others discussed Politics--they were the bottom layer; making money--anything goes; and anti-gay; anti-feminist; anti-education; anti-semitism and last, but not least, anti-black conversations were the rule.) Since I was a weirdo, I talked with the other outcasts, and since we were friendly only because there was nobody else to be friendly with, they didn't really like me either. They would never call me. This was a rant, brought to you by some cranky patch I'm experiencing today and yesterday. I haven't changed my medication and I can't see any reason why I'm looking for a fight. All I can think of is I'm growing; I'm able to allow more negativity to surface. That's a good thing. So since I'm now recognizing my nastiness as a positive event, I guess it's time for nasty pictures of the creepy people I worked with. Or maybe their stories in fictional form. I hope I can remember to do it.