My Personal Lupus story
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Introduction
Accomodating Lupus Living With Lupus Luping Out to Las vegas
Ocean City Lupus Living With Lupus II Las Vegas Without Really Gambling (2004)
Living With Lupus Third, ugh, Lupus Flare Since January 2002 Living a Day in the Emergency Room (October 2005)
Living Life Dealing With Mild CNS Lupus Flares Lupus Seizures (January 2005)
Lupus, Labyrinthitis, and Me The Art Rat Race Retiring (September 2005)
Highway to Growing Old Lupus in Brigadoon (September 2003) Galleries and Why Not (May 2005)
Lupus Christmas Lupus (December 2003) My Lupus Journal
Animal Stories More Lupus Adventures With My Psychic Dog My Blog
Sammy the Dog Sleeping Beauty (Hypersomnia) (May 2004) Big Sammy
Little Sammy Speaks Again B-Square or Be Sick Losing Your Mind and Your Teeth (2004)
Goodbye Sweet Puppy (May 2004) Seeing Me Rodeo Day (July 2004)
Insanity Handicapped Life (February 2004) My Baby Boy Graduates
The Schools (September 2004) No Draft (Sept. 2004) Shaking the Shrub Out of His Tree
Shopping Therapy (2003) Lupus Links


Introduction

My name is Jaynee Levy-Polis. I am a professional artist. I'm having a great time with my drawings now. I have been married to the same man since I was almost 17--really a baby. He's always been supportive through all my schooling, through the lupus, the job, and the children. We have two children, a boy and a girl. Our daughter isa Biology teacher, an adult, who has her own house. Our son is 18 and starting Drexel University for Chemistry. He's a good kid, and a good student. Both of our children love Science, but, of course, that doesn't stop them from being my resident critics.

My lupus really started when I was in Art School. I used to get nauseous and dizzy while I painted. The doctor told me it was nerves. That was in 1973. I had mononucleosis twice, once in 1977, and again in the 1980s. The second time took me months to recover. I think both attacks were actually Lupus, but nobody was looking. In 1991, I started to get headaches and immediately after that, my joints started to bother me--badly. Of course, I was told by my doctors it was my nerves, then that it was Fibromyalgia, then Arthritis. I was put on a popular sinus medication for a couple of years. When I broke out in my first rash, the doctor diagnosed Fifth Disease.

Finally, the assistant doctor--whispered one evening, "You don't want it to be Lupus..." He was the first to even think of Lupus. I made it my business to educate myself, and lo and behold, everything fit! I started to write my symptoms and kept a list. Over the next few years, I made the rounds of doctors. They were generally unsympathetic. Once, I was insulted and humiliated by a doctor who is supposed to be the Philadelphia expert on Lupus. He literally talked about me and what a typical Fibromyalgia patient with a list! I was, while I was about three feet away from him. It took another year before I could go to another doctor. But when I did, I finally got a diagnosis of Lupus.

One of the things that had made it difficult was that my lupus was and is mild. I have Central Nervous System Lupus. I suffer from (mild) chronic ever-changing lupus symptoms, like every other lupie. My doctors disagree, sometimes don’t call back, and give me conflicting information, but I mostly decide my course of action for myself. I have no qualms about finding new doctors when I feel it would help me.

Very recently, I had what I think was a flare. For months, I had spells of lightheadedness every day. My head hurt or I had migraines almost every day. I thought my medication was not working, but it was. The test that showed what was really wrong with my head—the SPECT scan—had improved from the last one, indicating the medication I take is working. Usually doctors do not suggest medications and this time was no exception. Since it turned out to be a little flare, I am just continuing with the old meds.

Every day, I work at art and my web site. I garden and read too. I drive all the time because I suffer from motion sickness as a passenger. I am caught up in exhibiting and selling my work. I am able to pursue all of it through drugs. Otherwise, my hands shake, I am in a fog mentally, my brain hurts, I am nauseous, my joints hurt, and I have weird nerve tics. I take a beta blocker in the morning and nortriptylene after dinner, in addition to the cornecopia of pharmaceutics I swallow. The two I mentioned have virtually stopped the head stuff and the all-to-frequent nausea. I learned to swim and I do that twice a week for my joints. I cannot care how my house looks, or nice meals. If I do that, I do not have time to do Art. I absolutely do not take responsibility for stuff other people think I should do. (Or, at least, I try not to do that.)

That’s my story. I used to think living through a traumatic childhood added to my chances of having Lupus. As an adult, I went for counseling and straightened myself out. Whether it was the trauma, Strep throat at 16, or pregnancy that triggered my lupus, I believe with counseling, I decreased the stress I internalized and possibly decreased my symptoms. When I get upset, I do what I can to take care of myself. I pray too and I still have relationships with my family who are on "the other side" and they help me. Every little bit helps. I am very grateful to my husband for his support and his help, my children, my family, and friends, for the joy they bring me, my job for the lack of pressure, the intellectual stimulation, and the money it brings me. I have a lot for which to be grateful, and I remind myself every day. I want to enjoy my life and make Art. Anything else is a bonus, and I’m really thrilled with those bonuses. Thank you God and family.

Love and hugs,

Jaynee A. Levy-Polis

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Dealing With Mild CNS Lupus Flares

Very recently, I had another lupus flare. The symptom this time was depression--bone-deep, horrible, suicidal depression. I've been depressed before for a day, two, but closer to pre-occupied while I worked out a problem bothering me, but never depressed at this level. I've been exhibiting steadily for a few years and I finally got the message that I'm swimming upstream with my painting and I'll have to keep plugging away all my life and I probably won't get as far as I'd like. Where I am, and what I'm doing, is what I wanted all my life so it's not as though I'm broken-hearted, and there's the rub. Why would I be ready to throw in the towel? I knew I was upset, but I knew this shattering depression wasn't normal for the situation or me. I had already been reading Central Nervous System Manifestations in Lupus by Dr. Lahita and I knew mild CNS Lupus could cause all different kinds of symptoms including depression. So I contacted my neurologist and my old therapist and asked their opinions and advice. Neither thought it was related to the situation at hand and my neurologist started me on relatively high doses of steroids and a higher dose of an anti-anxiety medication I'd been taking for my lupus migraines. The medications turned me back into myself and I'm grateful, but shaken.

I saw my rheumatologist yesterday who said he's never seen a case like mine--all the CNS patients are either totally confused, psychotic, measuring, etc. In other words, they're very sick. Can I scream now? Why don't doctors know that if a disease can be very serious, it can also be mild and can still be a problem? If I can understand a continuum, why can't they? It took me years for them to listen and finally treat my vertigo, I guess because I hadn't fainted and fallen under a bus. To them, you just aren't sick if you aren't next to death, and even then, they hesitate to treat you. I'm at the end of my rope today; it was, as they say, my last nerve. It doesn't pay to change doctors either. They're all the same. I guess the important part is that I'm getting treated--because I'm so pushy. I refuse to just lay in bed, sick, but not sick enough to qualify for legitimate treatment. MRIs, CAT scans, PET scans, and blood work will usually not confirm a CNS flare but docs look for that anyway. Drs. Lahita and Wallace have both written extensively about CNS Lupus and all the little facts I've mentioned above, but they're addressing an audience of doctors who stopped listening after medical school. They're done and God help us--make that our families--if we need their help.

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Third, Ugh, Lupus Flare Since January

Jaynee writes another installment on Lupus and being an artist.

Last week, I had the great gift of another exhibit opening. This one was courtesy of my friend Theresa Gaskin, also an artist, who arranged the show at the Eastern Baptist Theological Seminary. Theresa had two other friends entertain, with music and song. The seminary served all kinds of little sandwiches, cakes, and dips and the whole event was very festive and exciting. The week before I had opened a solo exhibit at a restaurant and I had a big turnout then a dinner party afterward. (I feel like a social butterfly.) After the seminary opening, we drove to a dance in Runnemede that was raising funds for the place where my art classes are held. That felt okay despite how it busy it looks. Saturday is always a busy day for us, shopping and enjoying ourselves. Last week, we decided to eat at a restaurant around 20th and Chestnut Streets and then walk down to a book reading at 11th and Walnut Street. We had a good parking spot. Bad idea. I was exhausted.

The next day, I awoke with extreme nausea. My lupus causes nausea, dizziness, vertigo, and migraines. That is because Lupus causes inflammation (anywhere in the body) and in my case, it is usually in the inner ear/central nervous system. Maybe that sounds insignificant, but due to that swelling, I have sustained brain damage and memory loss. Years ago, I was almost a genius, but obviously not anymore. I miss it sometimes. I know enough to be grateful I still have what I have and that I haven’t sustained a stroke, one of the other threats of Central Nervous System Lupus. I have other minor problems like bursitis and related joint ailments like Carpal Tunnel Syndrome, and fatigue, in addition to a history of many of the mild lupus symptoms. Generally, I don’t mind them. I just want the ability to enjoy my life my way. Lupus can kill, but it can usually be controlled. And that’s what I did. Control it. I hit the steroids immediately. By the afternoon, I could sit up. I took more steroids than I was supposed to do because I have trouble organizing things now, so after the second or third day, Harry took over. Tomorrow is my last day on prednisone, the steroid, for this bout. I’m looking forward to resuming my life.

Theresa is going to pose for a new painting of the Great Goddess. I’m starting a portrait commission, and I’m about to send two paintings that sold to Europe. (I’m doing that slow to enjoy it to the hilt.) I still have three exhibits going now, and two more planned. I’ve sold work at all the shows. I thank God for my talent, my intelligence, and family and friends who love and support me, especially Harry. Harry hangs my paintings and takes care of me when I’m brought low by the wolf—Lupus.

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Accommodating Lupus

Lupus has changed my life, but so far, I have been able to make adjustments that let me keep carrying on. “Truckin’”, as people used to say. At my job, I asked for “accommodations” guaranteed under the Americans With Disabilities Act. I have had some problems with healthier, jealous people, who cannot imagine why anyone should get any breaks they are not getting. They are “Special Beans”, who naturally, deserve special attention while others do not deserve any. Plus, sometimes people cannot conceive of Lupus being a problem since we usually look healthy. Others are compassion-handicapped.

Regardless, the truth is I am very tired lately—too tired to sit up, too tired to talk on the phone, too tired to paint, too tired to work on the computer. If I persevere, I develop migraines or Lupus headaches. I can feel the exhaustion behind them. To deal with the fatigue at work, I brought in a little fluffy bathroom rug and a bed pillow and put them on the floor. I lay down on breaks and lunch. If I need more, I can request it under the ADA. Another method of coping is a wheelchair. It is not a perfect solution as so much is not accessible—like stores with big displays and not wide-enough aisles. The wheelchair is heavy too and not easy to push but it allows me to go places with Harry. It feels like being in a stroller to me and it really saves my energy.

I also asked our 18-year-old son to help me and he agreed. He took on two heavy jobs I did every week. It makes a difference. He has also become somewhat solicitous. Now, if I could convince the dog to take care of himself...

My last adjustment relates to painting. Painting to me is pretty much is the same as being free to speak my mind or wear whatever I choose. It is how my heart speaks to the world (whether the world listens or not.) You can understand it is important. We had an undersized desk-chair repaired and Brian lifted it into my little painting spot. I lowered my easel and “Voila!” It works!

I still have lots of adjustments—emotional and physical—unless this fatigue turns out to be another fleeting lupus symptom. One never knows. I cannot say I am not upset. But at least I can paint.

This article, as well as the others, appeared in SCOOP, USA, a Philadelphia entertainment newspaper.
©2001 Jaynee Levy-Polis

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Ocean City Lupus

Harry and I just returned from Ocean City, Maryland. We were curious about it, having spent about an hour there years ago and hearing good things about it after that. It turned out to be the quintessential seashore town. The beach was gorgeous, the boardwalk wide and three-plus miles long, and the boardwalk souvenir stores never-ending. We made reservations at a lovely beachfront hotel, knowing this was our last vacation due to Brian’s college and my health costs. The first room they showed us was small with only a sliver of the beach visible, so we opted for a more expensive one. It turned out to be a suite, with a living room, a Pullman kitchen, two balconies, one right over the ocean and the other with an excellent ocean view too, a Jacuzzi, two big color televisions and more. I spent most of my time on the balcony. I had asked for and received a wheelchair from my health care coverage because my energy level has been decreasing from the Lupus. The first night there I was glad I had it. I thought I would feel uncomfortable being pushed along, but I felt fine, and I could have ridden along till Harry fell over from his own exhaustion. It was so nice to see things and not feel half-dead, I was very happy.

Lupus has a myriad of symptoms that change as time goes by. It is not supposed to worsen, but mine has, and the reality is, it can because the nature of Lupus is unique for each person. This vacation brought home to me the message that my energy is limited. I could walk on the beach for only a short distance, even when the sun was down. I just did not have the where-with-all. When we were leaving the Rehoboth/Ocean City area, we stopped at the outlet malls. I hit one section of one and I was knocked out. I needed to use the wheelchair, but it was too unwieldy for Harry to manage. So, I dragged around and got sicker and sicker.

I have not had an alcoholic drink for a week or so either. I found that each medication I took decreased the headaches and strange floating, dizzy, and headachy feelings I had since 1990, but none took them completely away. I noticed that having a drink brought them out, so I thought I would try not drinking and see if it helped. So far, it has. I loved having my glass of wine or Bourbon Manhattan on a Saturday night, but I cannot stand the “migrainous episodes”, so it is deep-six to the booze.

My painting is suffering because my ability to stand and paint is like a roller coaster. I do one job and I am wiped out. It may take hours before I am ready to paint. I do not know what to do about that yet. Lupus calls for a life adjustment. I am grateful I can function and work. But that does not mean I cannot rail against Lupus and what it has cost me.

©2001 Harry Martin Polis

Harry is available for lectures and entertainment with stories and poetry. Contact SCOOP USA, or e-mail Harry.

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Living With Lupus

For weeks, I’ve been depressed. My lupus doctor moved to the suburbs and referred me to a new doctor—she said a “hand-holder”. The new doc insisted on a barrage of tests to gauge where my central nervous system lupus was now. Tests showed I have vasculitis of the small arteries in my brain and that causes progressive brain damage. Previously, when I had flare ups, my internist called it “Labyrinthitis”, which is an inner-ear problem that stands alone. That wasn’t really the problem, although that was the outcome. The problem was my vasculitis causing a lack of blood to certain nerves, which caused inner-ear disturbances. The difficulty with lupus is that it closely imitates many other illnesses. Even when lupus is diagnosed, as with me, flare-ups can be misinterpreted.

The first test to be repeated is called a SPECT scan. Not being claustrophobic, having a shot, and lying still under a giant machine doesn’t bother me. The SPECT scan was able to see that although there was still some abnormal blood flow, it looked okay enough to the radiologist. My neurologist said any abnormality is abnormal. Next, I spent all day at a hospital taking a Neuropsychological Evaluation, also my third, but my first at this hospital. The neuropsyche eval measures cognition, memory, emotional difficulties, and muscle/nerve strength. They are able to specifically identify deficits and which parts of the brain are affected. This is really a terrific test. I had to call around to see who was covered by my insurance, but it was worth it. My results were complicated and disturbing. I have specific areas of difficulty in the same areas where my other skills remain excellent. They showed more problems than I suspected. The next test was a brain MRI with contrast. That means half the time you lay in the MRI “plain”, and then they shoot a chemical into your veins, which will highlight problems, and you lay in the MRI for the rest of the hour. The MRI results were a surprise for me. They turned up a lesion on my brain. My neurologist called it a Meningioma—a kind of tumor. He says they can just watch it for now. The fourth and last test I had was one my doctors had to fight for. My insurance arbitrarily turned it down initially, but eventually, my doctors won. I had to take the test at the University of Pennsylvania Hospital, the only place in Philly who offers it. It was a PET scan, a much more complicated test similar to a SPECT scan. It will show how much blood is going to specific areas of my brain. The results will be in from that next week. I will know what kind of tumor I have, and how serious the slow blood flow to my brain is.

Needless to say, I have been on edge for weeks. I started complaining to my rheumatologist wanting to staunch the progression of my brain damage. Her retort is that she doesn’t want to throw very heavy drugs at it unless the problem is deadly serious. My question is why not half-measures? I still don’t understand and that doesn’t make this time easier for me. All this stress and complicated medical tests are not unusual with lupus. Patients have to fight with doctors for a diagnosis and for treatment. It never stops. I know there is a lesson in this, and I hope I’m learning it. Meanwhile, I’m a nervous wreck.

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Living Life

I am waiting for the test results for two very important gauges of where my central nervous system lupus is at now. I think it has notched down, but by only a very little. Will it show? Will that matter to my doctors? Will they pay attention? What will they recommend? I have worried over these tests for perhaps a month. Before this, in January, I had a flare of my lupus while I was getting ready for an exhibit of my artwork in February. I could not work during the flare. I couldn’t even lift my head for a couple of days, but when I could come downstairs, I matted and framed my work. Harry was and is always a tremendous help. He takes care of me. Some husbands are like that, but most are not. They say they need their space, or they can’t “handle it” and they disappear.

At work, I had to ask for a minor accommodation. The administration changed the flexible hours to rigid ones. I could not handle the stress every morning of worrying about time. I never know how I will feel, especially in the morning. It was such a little thing, but now, I’m feeling resentment from a couple of coworkers. I wish them the same kind of health problems I have. I can’t work up compassion for these cold angry people. There is also resentment from some bigoted people about my son’s girlfriend. She has no parents. Her family put her out of their lives. She is so much like me; she could be my daughter, except for her color. She is 19, no child, so she can make her own choices. I feel that she is my second daughter. It could be said that I am her mentor, and that would be right too. I cannot say yet what exactly our relationship is. I am her almost-mother. I love her and want to see her recognize and take joy in being smart, beautiful, well educated, and talented. I want her to be everything she is, and to take pride in her being. I look at her and I am happy.

I am sad for the anger the others seem to feel. I just bop along doing what feels right to me, being careful not to hurt anyone. I am driven to paint, and I always conserve my energy and time to create artwork. After that, other things just fall into place. My almost-daughter dropped in like a gift from God. I did not consider the pros and cons, add up the costs, or agonize over whether people might object. I knew making her part of my life was God’s will. It was right. I knew it like I knew I needed to paint or that I adore my son. That was enough for me and it always will be.

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Lupus Labyrinthitis and Me

Last Friday I was swimming my laps at a neighborhood pool. On my backstroke lap, I suddenly got dizzy. I decided to exit the pool and hopefully avoid making it worse. Harry and I had a great time having dinner out with a friend and then we watched a good movie. On Saturday, we had planned a fun evening starting with dinner at our favorite Chinese restaurant then a movie in Cherry Hill. Those plans ended when I became dizzy and nauseous. It was so bad; I got into bed with my clothes on. I couldn’t pick up or move my head, focus my eyes, or wear my glasses. My head felt heavy and I had a migraine that wouldn’t go away. I couldn’t talk because I was so uncomfortable. I just went to sleep until Monday morning with breaks for complaining. On Monday, our doctor prescribed steroids, and by Monday afternoon, the headache had cleared and I could talk.

By Tuesday, I could sit up, and Harry drove me to the doctor’s office where I lay on two chairs. Dr. Schatz quickly diagnosed my problem as Labyrinthitis, or True Vertigo, inflammation of the tiny canals of the inner ear. On one of the many articles I found on the Internet, it explained the labyrinth is a dime-sized place with fluid-filled tubes, sacs, and nerves connecting the inner ear to the brain. Dr. Schatz said that Labyrinthitis can exist on its own and is thought to be an autoimmune problem in its own right. He admitted that Lupus inflammation could initiate inner ear problems. When someone has Lupus, her antibodies attack her own nerve cells or blood vessels. That causes inflammation, which cuts the normal amount of blood flow to the nervous system. When it doesn’t get its normal amount of blood, it starts to act strangely. I think doctors don’t know exactly how or why the inner ear balancing mechanism stops working correctly. They also don’t have a surefire cure. Steroids usually help and they are finding that huge doses of generic Dramamine help. Huge is 75 milligrams instead of the usual 12-½ milligrams. Dr. Schatz said vertigo is one of the most common reasons people go to see their doctors.

For me, having this flare and finding out what it was has added another piece to my Lupus puzzle. Nobody knows yet what causes Lupus, or whether its myriad manifestations are actually Lupus or other have other causes, like Lyme disease, infections, or viruses. I hope this article helps at least one other person who has the same kind of Lupus I do, get one step closer to feeling good again.

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Highway to Growing Old

Lupus is supposed to be a chronic disease that is not progressive. People are told they will experience the same symptoms over and over. Lupus never attacks the neck? Lupus headaches are different from Migraines? Labyrinthitis, degenerative arthritis, irritable bowel syndrome, migraines, and skin problems are all just consequences of growing older? Is 52 old? If you believe all this, you just believe anything anybody tells you. I don’t. After 17 years of neck pain, I finally went to the Orthopod who took x-rays and told me I have degenerative arthritis. I had to have foot surgery because that same thing is eating up the soft cushioning in my joints down there. My skin now has big blotches where I used to have freckles. After I swim, my snorkel leaves dents that take between three to five hours to disappear. My nose has sores inside most days. The skin is acting old. My joints are acting old. I forget and have trouble learning. Information does not sink in. I forget art exhibits all the time. My neurologist explained my brain looks like sausages and the blood or oxygen can’t get through that well. It’s called vasculitis. I know what middle-aged people forget and I forget more. I’m not stupid; I just lost a few pieces of the puzzle. People still expect me to follow their train of thought, and to remember how to do things. My energy level would put a seventy-year old to shame, then again, maybe not. Lots of them play tennis and are very active. One activity is all I can do each day. At work, I am expected to take a walk and get building plans. That is a big project to me.

Sometimes I feel like crying. I wear a neck brace off and on all day for now. I sleep in that and wrist braces. My knees are up on a special pillow for my lower back and I have rolled towels at the small of my back too. I swim twice a week and do special exercises for my back, my shoulders, knees, arms, and hips. I need another pillow for between my legs for my left hip, which was acting up. I take so many medicines and some effect the liver. I am afraid I’m damaging that organ. Will I be sorry later? Will this stuff steadily worsen? Nobody knows.

Last week, I talked with someone in one of the Lupus organizations. She believes Lupus attacks body systems. Daughter Honey, Biology teacher that she is, has been telling me this for years. That means no one knows what, where, and how Lupus can effect any organ. It seems to me Lupus is aging me, effecting my skin, brain, and joints. I know I have to be grateful it hasn’t attacked my kidneys, which it frequently does. It’s wearing me down though. Thank God for my family, the people I love who love me, my animals, and my art. They are what make life worth living.

P.S. After all that, I'm sorry. After my last flare in Jan., 2001, the docs say my brain just isn't getting enough blood everyplace. It isn't Labyrinthitis. So much for accurate diagnosis. I'll be writing soon...after the next SPECT scan and Neuropsyche eval.

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Lupus

This article appeared in SCOOP, USA, in February, 1999.

Lupus is an autoimmune disease that mostly hits minority women in their childbearing years. In its worst forms, lupus can kill, but in the majority of cases, the symptoms of Lupus can be controlled. It is different with each Lupie because the body manufactures various amounts of anti-bodies and they effect different organ systems according to each person. Each Lupie's body reacts in its own way. There are common symptoms.

Often Lupies develop kidney troubles, many people get migraines, and experience what Lupies call "brain fog". Two almost universal symptoms are fatigue, and joint pain. Lots of symptoms are chronic, as is the disease. The symptoms do not count as "flares". When Lupus does "flare", attacking an organ, Lupies are fed drugs to decrease the inflammatory process. Inflammation is the trademark of Lupus. Eventually, the flare subsides, and the disease goes back into remission. Occasionally, the Lupie dies or has permanent damage.

Lupus usually repeats the same physical problems repeatedly and it is not progressive like Multiple Sclerosis. At least half the people with lupus work, have families, and live normal lives, including living a whole normal lifetime. The cause of Lupus is unknown and there is no cure. Most often, Lupus goes undiagnosed and the person who has Lupus just feels under the weather much of the time. When Lupies realize there is something wrong, it usually takes up to five years to achieve a diagnosis. Clinical evidence is elusive as the symptoms come and go and they do not necessarily present in the same way twice. Lupies do not look sick. We usually look perfectly healthy. Doctors are reluctant to call symptoms part of Lupus because the symptoms could often be something else. Even after diagnosis, Lupies suffer an ongoing parade of annoying and sometimes debilitating symptoms. Some symptoms I have experienced have been:



Another Lupie might have a totally different list. Lupies have to meet specific diagnostic criteria in order for doctors to give a diagnosis. There are guidelines for physical problems and blood tests. Once diagnosed, at least the Lupie can get medications so that he or she can live life to the fullest despite the disease. Lupus used to always be a killer. It still is, but most of the time, with most of the people, it is just a chronic annoying problem.

©1999 Jaynee A. Levy-Polis

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Living With Lupus II

This is my second week in and out of migraines, nausea, and dizziness. I’m easily exhausted, but Lupus causes that most of the time. Sometimes people with lupus don’t have the energy to button their shirts. When I shower, I need a shower chair because the effort knocks me out. Washing my hair is a big deal. I take the shower chair out with me and sit on it to dry off. It’s just the right height. But that’s the energy level I have with lupus. Your joints hurt, and they’re heavy. Putting earrings in can be a problem. And I swim twice a week usually, so I am more “in shape” than many lupies.

Last week, I can’t remember if it started at the pool—since lupus has affected my memory—I started to get dizzy again. Last year, I had Labyrinthitis, which I believe means the inner ear is inflamed. (Lupus causes inflammation anywhere in the body.) This week, it started again. But I recognized it and started steroids, Meclizine, and compazine immediately. Of course, I had to contend with abdominal pain that didn’t respond to any medication, but no one can figure out what that is yet. Lupus sucks and mine is minor. For the last couple of months, the migraines have returned along with severe abdominal pain. The migraines eventually respond to medications—there are excellent medications out there. No one needs to suffer with migraines anymore. The abdominal pain is a mystery but it doesn’t last for more than two hours.

I missed a few days of work so far and I’ll miss tomorrow. I’m grateful it is only a few. I feel truly blessed in many ways. My biggest blessing is my family, then my friends, and my own abilities. But another way is that the lupus is mild and diagnosed. In order to battle lupus, you usually have to fight doctors to recognize your symptoms and they are vague and easily attributed to common illnesses. If you say anything about being depressed, doctors will tell you depression is the cause of your ailments. That limits your ability to say how scared and alone you feel. And lupus is scary. Frequently, I go through a symptom a week. And they’re wacky sometimes. And sometimes I have thought I was going to die right then. People have strokes, heart attacks, seizures, and brain swelling; become paralyzed, all from Lupus. Your hands shake and your feet go to sleep, and then you get lost going to the kitchen. I can’t remember how to turn on and off the water in the tub. No disease is fun, but on the other hand, life is a lesson, and I’m grateful to be here. I am loved and really, there is no better feeling than that, even if I’m dizzy!

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Lupus in Brigadoon

There is a land called Brigadoon, only it's name is Port Orford and I'll talk about it as much as I can while I complain about my newest Lupus symptom. Lupus is an autoimmune disease in which the body believes some normal organ or blood vessel is being invaded by a virus or something and to fight the non-existent virus, the body sends white blood cells to fight and that causes inflammation. I may have that a little wrong, but that is the general idea. Lupus can affect any organ or blood vessel. For me, it seems to have attacked the capillaries in the brain causing a lack of blood flow sometimes, and therefore brain damage in some areas. Researching under traumatic brain injuries, I finally tracked down my difficulty in awakening from sleep. Mild symptoms include: headache, confusion, lightheadedness, dizziness, ringing in the ears, fatigue, behavioral or mood changes, trouble with concentration, attention, nausea, inability to awaken from sleep, slurred speech, etc. I've experienced all of those, but the sleeping stuff is new. Was my lupus doctor any help? Of course not!

Now that I know it's neurological, I imagine my neurologist will understand but there is no cure. My brother has lived in Oregon for about 25 years and every time we visit, I want to stay. He bought a house at the Oregon coast and this was the first time we saw it. I loved Portland and the Northwest in general. Every time I see the mountains, I feel God's presence and the reality of truth and beauty. Mount Hood is special to me; I've actually climbed it a little. My brother drove us the 277 miles from Portland to Port Orford-and it took eight hours. Luckily, there were about four restaurants and seven galleries there and not much else. There was nothing to do except go see the monoliths on the beach, and sleep. So I slept the mornings away, dragging myself out of bed only when Harry yelled about breakfast at least three times. I had a wonderful time; my brother is a marvelous host. I would like to return to Port Orford every year if I can afford it. But every time a new neurological symptom arises, I worry about my brain staying viable for as long as my heart beats. Only God knows and I'm scared.

©2003 Harry Martin Polis

Harry is available for lectures and entertainment with stories and poetry. Contact SCOOP USA, or e-mail Harry.

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Christmas Lupus

I learned a Lupus lesson this week. I had a big argument with Harry basically over our difference in character. Harry said something about how he didn't feel continuing to spend energy on my artwork and exhibiting it was not worth it and that was all I had to hear. I blew up. There isn't much I get too upset about but that's what I call "Raining on my parade." Painting and exhibiting my artwork are central to my being happy in this life. I really have to draw, at least at this time in my life and for the last 48 years. Anyway, I realize now that it's harmful for us Lupies to blow up. Whenever you have an autoimmune disease, including Arthritis and Diabetes, you are putting your health at risk when you rage. I came down with a Lupus flare the next day. It was Christmas shopping time and there I was nauseas and migrainous. Yuck! I didn't have a choice but to load up on Prednisone, Meclizine, Maxalt, Midrin, and Composine and go out shopping as much as I could. I would disappoint my daughter only if I couldn't lift my head, but this time, I could, so out I went. The crowds weren't bad and the driving WAS, but if you watch out for the drunks and people driven crazy by the season, you'll probably be okay. It IS a joy to find things you love for people you cherish. We bought fine towels for daughter Honey's new house. Christmas has been fun despite Lupus trying to get me down. We've been to parties, met new people, and partied with our old friends. I'm having a hard time oil painting because I just don't have the energy to stand, but you have to work with Lupus. We have to work with whichever disease we have. I should lose weight and stop eating sugar, especially being on prednisone. If you have Diabetes, you don't have a choice. Prednisone shortens your life, and recently, Diabetes has been shown to shorten your life by 11-16 years usually. All these diseases can seem so innocuous, but they're INSIDIOUS. Just be careful and enjoy your life to spite them!

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Animal Stories

Sammy the Dog

Jayne used to have a dog many years ago. Her name was Rochael, or Rookie, depending on how we felt that day. We had to give her away because she would jump all over everybody when they came in and tear things apart when we were away. Although Jaynee didn’t care, frankly I couldn’t deal with a very frisky dog. Lately, Jaynee has wanted to have another dog. She swims with a woman who trains animals. The trainer has been working with a family who decided to give away their Golden Retriever. The husband had died and the dog is big and heavy. The mom couldn’t control the dog. Jaynee went to see the dog and spoke with the eight-year-old son. The little boy presented the dog as totally wild and the dog did snitch all the boy’s leftover breakfast. However, the dog also leaned against Jaynee’s leg and let her brush him for as long as she felt like it. The son gave his consent to giving the dog away with the mom’s promising to buy him a smaller dog. When he was supposed to come see our house, he and our son Brian got sick. Everything had to be postponed a week. That means I get a week’s reprieve.

Last week, the lady brought the dog to meet me. He was a beautiful Golden Retriever who was actually auburn. Sammy, the dog, was really a pretty dog, and well fed. The dog seems nice but he needs training. The dog trainer has promised to help us train him in return for a portrait of her dog. Sammy seemed to take to me—the dog-lover that I am. I need a dog that has a good disposition and who will not bother me in my daily pursuits. Although the dog is nice, he is not like Honey’s dog Tree. I am used to Tree. Sammy is a quieter breed. I guess the jury is still out on Sammy. Can he be alone without tearing things apart? Will he let us leave the house and let others in? Will he be okay with the mailman? Will he learn not to run like a maniac when he spies another dog? We need to see and understand his nature and abilities. Adopting a dog is too much like adopting another member of the family. This weekend we were supposed to have him visit so we could judge his behavior in a longer space of time. We will have to wait for another weekend, especially since the eight-year-old is now screaming and doesn’t want to let go of his dog. Jaynee had to promise that she would take the dog, but now he may not come for weeks, or months, or never. Time will tell, and then I’ll tell you. Wish me luck and patience.

P.S. Sammy stayed for six more years and became a much-loved member of our family. So far, he's in three paintings too!

Big Sammy

Six months ago, we adopted Big Sammy, our auburn Golden Retriever. We are his third owners and he spent time in a veterinarian’s dark basement cages. He stuck to Harry or me like glue, was afraid of teenage boys, motorcycles, buses, trucks, and anyone leaving. Left alone, regardless of how many toys, or bones left out for him, he freaked out. He chewed on rugs, broke the screen door, ate the seat belt and harness in the car, and shredded clothes. He permanently scarred his beautiful snout by scraping it on the crate trying to open the door. His behavior is known as Separation Anxiety. When I took him for walks, he pulled me down the steps and across the street. If he saw another dog, he jumped around and barked trying to get to the other canine. He weighed 90 pounds with lots of muscle so Harry and I were pulling muscles at the rate of once a week.

Lane Finkel is a dog trainer with a big heart. She was training Big Sammy at his previous house and the woman just couldn’t keep him. She was not able to be forceful enough, and perhaps did not have the energy. Although Lane was afraid of Sammy because at that house, he was very angry and growled a lot, Lane believed under that aggression, there was a sweet Golden Retriever. She asked us if we would take him, and although Harry did not want a dog, something made us adopt him. I had an intuitive feeling he was meant for us.

Harry and I worked with Sammy every day, “healing/heeling” and loving him. He acted out and destroyed our New Orleans tote bag, my shirt, and some expensive stuff. It is now six months later, and Big Sammy is a different dog. From the minute we got him, he was happy to be here. Somehow he knew we would be strict, but he would always get what he needed and lots of love. He stopped being angry immediately; never bit anyone, just giving kisses.

Now, Big Sammy is our baby doggie. He’s three years old, doesn’t pull on the leash, is comfortable with motorcycles and teenage boys, and can be left home alone. We are still working on this. He still gets nervous, wondering if we will come back. He loves to ride, but we are still afraid to leave him in the car alone. It turned out that Golden Retrievers are funny. They do cute half-jumps when they get excited. They eat everything. He’s down to about 83 pounds, but that’s a struggle. He begs for Brussels sprouts and eats them on the fly. He cries for anything we eat, including salad. Bleu Cheese dressing makes his day. He lays on us and tries to sit on our laps. Best of all, he smiles and grins. When he grins, he bares his teeth with the little bottom teeth showing. It isn’t like any other expression and you know he’s grinning when you see it.

I believe we were meant to have Sammy. I promised our daughter Honey no matter what happened, we wouldn’t give Big Sammy away. This vow was important when times were rough. Now, we’re glad we persevered. He is a joy.

Little Sammy Speaks Again


(Sorry about his eyes. They're really blue.)
Hi, I’m Little Sammy. I’m a truly gorgeous Siamese cat. I’ve talked with you before. Jaynee and Harry belong to me. Their children, and especially Brian’s girlfriend, also belong to me, but they’re young. I try to let them feel free. It’s healthy for them. I’m back sleeping with Harry and Jaynee, so they are sleeping better. Harry needed me so badly; he made the giant red thing leave me alone. The big red machine gave me a kiss the other day, so maybe eventually; he will fall in love with me too. I understand now also why Harry needs the thing called “Dog”. Harry loves to cook. Since he retired, his collection of cookbooks swelled, he bought new pots, and he is always looking for spots to hide cans, meat, and boxes. He stays near the gas range for hours stirring and chopping. I watch over him, letting him see me while he’s cooking, thereby lowering his blood pressure. Brian’s girlfriend also likes to stir things over the gas range and put pans in the oven. It’s fun to watch the dog get excited about each pot and dish. (He always thinks they’re cooking for him!)

I’m happy watching them sit around the dining room table, eating and drinking. They talk and smile. What they eat is disgusting, but I don’t tell them. And now we come to the reason for the dog. They need him to finish all the food they can’t eat. The dog loves all that gross stuff they eat. He eats every bit and cries for more. If they give him all their leftovers, they can cook more the next day. There isn’t enough room to keep it. So now I understand the reason for a big red animal. He has to be big to eat all that meat, spaghetti, salad, and casseroles. As wonderful as I am, I can’t eat people-food for them. Consequently, I have decided to tolerate the big red thing. He can stay as long as he performs his duties. I have a message from the big red one. He would like to recommend trees and grass to everyone. Fire hydrants are nice too, but trees are really lovely, he says. He can’t understand why you all need walls and ceilings, but your food is so good, he’s willing to compromise. Meantime, I give you my blessing for a warm Thanksgiving. Let’s be grateful for what we have and learn the lessons God is trying to teach us.

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Seeing Me

Today Jaynee writes:

Different modes of operating….. Recently, a woman I knew died. She wasn’t someone I liked, in fact because of her behavior; I was forced to come to terms with not registering on someone’s radar.

Over the last two weeks, I had lunch with one of my two cousins and a friend. Both times, it felt as though I was in a warm, loving place. Cocooned. I was with people, who appreciated what I thought, who wanted to know my opinions, who cared what I was doing. Was I painting? What was I painting? They didn’t care if it was selling or not or whether it was being shown. Just was I painting. How was I managing? And I wanted to know the same of them. One writes. One acts. Both are open. They are vulnerable. They are my kind of people.

I try to like other people. I know so many folks, and I want so badly to love them, to be their friends. They want me, and I try, but in the end, the friendship flounders. I like honest, open people, or none at all. Emotional problems also get in the way sometimes. I don’t understand why I don’t register on tight people’s radar. I just don’t. I want to, but over and over, I’m with them, and they don’t see me. Money, accomplishments, clothes, or beauty do not impress me. I don’t gamble and slick people turn me off.

Harry and I spent time with his family today. I had such mixed feelings. At lunch, we sat across from Harry’s very smart elderly uncle. His values are way different from mine, but he was so sharp, I had the feeling he could see me, just like I could see him. And I really look. I wasn’t entirely comfortable, yet I appreciated being seen. Almost none of the rest have any idea who I am beyond my name. Like most people.

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Insanity

One of the major illnesses in this country is mental illness. We have all read about the shootings in the schools in the newspapers and seen on television. Everywhere we look today, in the home, at the work site, on the highways, insanity rules. People have let out the “stops”. Recently, I myself have seen first-hand what insanity can do. Two people who are close to me were involved in serious episodes of mental illness. Witnessing “acting-out” behavior leaves us feeling helpless, frustrated, and very upset. It is difficult to find a path to the person who is suffering, and one of the people in my life will not admit he has a problem.

Part of the problem starts when we are children. I believe people are not raising their children properly. Physical and mental abuse occurs all over our nation. Some parents just ignore their children. We are breeding future killers. Not raising children carefully with love causes them emotional injury. Rigid rules don’t allow for individuality and since children cannot help but be unique, they need to be welcomed for their distinctiveness.

When those kids grow up, it doesn’t get better. The stress of our daily lives in the work place is a given. Angry, miserable people are running the show at factories, schools, and businesses. Wherever there are bosses and workers, there are bitter, resentful people on both sides. Today, people don’t just get fired or suspended. If they don’t sue, they come back with a shotgun. When will we wake up?

The insurance companies have drastically cut mental health coverage. Our leaders don’t care because their only interest is power, and they lose it if they admit to emotional problems. Those leaders in their ivory towers are rarely touched by the violence and heartache of mental illness. If they were the people being shot, you can bet your bottom dollar they would force the insurance companies to make mental health counseling available.

We desperately need good mental health coverage. Mental Illness needs to be accepted the way a broken arm would be, and then workers and children need to be referred when a problem is detected. Personality problems really cannot simply be swept under the rug. Bullies have to be stopped. It is too dangerous to pretend the shootings are aberrations. Part of our national character is rugged individualism, vigilantism, and violence. We could stop the violence if we could work to temper the urge to violence with a national commitment to conciliation and working together, in addition to counseling for people when they need it.

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My Baby Boy Graduates

This week, Jaynee talks about Brian’s high school graduation.

Our son Brian graduated from Germantown Friends School Friday, June 8, 2001. He had been there since seventh grade, and from the time he started, till the day he graduated, he called GFS awesome. That’s a marvelous thing to be able to say about a high school. He had the best teachers I have ever seen including two Science teachers who probably changed his life directing him into Chemistry though sheer love of the subject. Brian drove his twelfth grade advisor crazy this year because Brian was never on time and took off on a regular basis. The disease is called “Senioritis”. We all knew Brian was a good student and did his work, albeit late, so nobody worried too much. Brian won an award for Science and a number of scholarships after all. Truly, he’s always been an honest intelligent child. He made us proud.

The graduation was very nice. It was a real Quaker ceremony. No music, no awards. The award ceremonies were last week. At the graduation, we had a Meeting For Worship, the Quaker form of prayer and communing with the spirit of God. What happens during Meeting For Worship is that people stand and speak as the spirit moves them. People were crying, of course. Me too. Brian is my little baby all grown up. Well, almost.

He looked really handsome with his Civil War hairstyle. It looked great. Brian had a pretty big group really. Harry's mom, Harry, me, Honey, my brother came in from Los Angeles, Harry's brother, my cousin Jerry, Brian's buddy Ari, and Jeanette, Brian’s girlfriend. His boyfriend Simon came later and Ari had to leave. It's wonderful that he has so many people who care about him. Brian is very close to my cousin Jerry (and Honey). He can rely on my brother too, who has no kids, as does my cousin Jerry. I guess Brian is it for all of us.

We stood around a little bit outside the meeting congratulating other parents and kids; not taking photos because we forgot the camera in the trunk of the car. Then we all went to Chinatown where we had a banquet. We had planned it and gone to sample the restaurant about 2 weeks ago. It was wonderful. Unlike how they usually rush people, they let us take our time and the food was very good. What happened was that Simon was very late. He kept calling for directions from his car. He actually came when we were almost ready for dessert, so Simon’s eating kept us for at least another 45 minutes. We had a great time. After that, I drove for 2 hours to take Harry's mom home, which was only about 20 miles away. Traffic was really horrible. She was exhausted and I couldn't stand to drive anymore. We went home and changed, and then Harry drove to a barbeque at one of Brian's friend's parent's houses. We were the last people there, but we got to talk with everyone anyway.

After a while, the kids left for two parties in town. The parents’ party was in the suburbs. Brian's friends don't have jobs. Their families are way better off than we are, so it's not a real factor in their lives. The kids are great kids though, so what can you say? Yes, they have everything, but they don't look down on Brian living in a row house with parents with regular jobs. Their parents are that way too. It is a lesson to realize life is not always what you expect; it can be better. GFS gave Brian scholarships all way through. They nurtured and encouraged him and with that, they enlightened us, and as they say, education is an open door. Brian stands at the threshold of his adult life. I am shaking in my boots and at the same time, I know he’ll do fine.

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The Art Rat Race

I've wanted to be an artist since I was 8 years old, and I've painted in oils since I fell in love with them at 13. My work has been in galleries off and on since 1968, but only these last couple of years did I realize what it's really like to be a "working" artist. All I ever cared about was showing my work. Whether it sold or not didn't matter to me. Sometimes it did, and I was thrilled, but recently people are buying more of my work--both the expensive big oil paintings and the watercolor/pastels. That feels wonderful, and I get a kick out of it every single time. It's really exciting for someone to want a picture that expresses my life on their walls.

In order to sell the artwork though, I have to deal with galleries. Over and over. It's okay when they're straightforward and nice people, but so often they're something else. Besides, often it feels like their goal in life is to gouge the poor artists. No juried show will look at slides without being paid, which in themselves cost hundreds to make and lots of times the galleries "lose" them. I refuse to participate in that. For me, sometimes galleries schedule shows then close or change the date and never tell me. I know it's the general decrease in civility, but it makes me crazy. One closed and never bothered to return my work until I contacted the Chamber of Commerce.

What's the worst part? You can never stop looking for shows. Nobody cares if you exhibited 10 times last year, or last month. It's a new gallery and you have to keep trucking. There is no resting on your laurels. You have to keep dragging your work around to new places and setting up new shows. And you have to keep trying to get into New York and L.A. Why? Because Philly galleries think if you are in either of those places, you're good. It's silly but that's the story.

Now that I'm grown up and an artist, it feels good. I don't like the gallery scene, but I can do it for now. And I'm grateful I can.

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Psychic Adventures

Christmas '03 This past week I've had another lupus flare triggered by my getting really angry. My fault, but that isn't the point. I took my handful of drugs and eventually Harry and I went to eat dinner at the Red Lobster. Harry had the Gigantaplate and I had the slightly less Monster Lobster Etc. Plate, and I had to stop eating about 15 minutes before he did because my stomach had pretty much enlarged up to my eyebrows. While I was still feasting, I sensed something jumping up and down just off to my right. ?? I knew it was a spirit, but I didn't know whom and I was still eating so I ignored it. She would NOT stop trying to get my attention; she started swaying and dancing next to me. She just wanted to talk to me-the spirits will come to you if you can sense them in some way. She was about maybe 14 and she'd been to a party-I could see it-at the Red Lobster and it was a good memory. I had about 10 minutes before Harry finished to get her to the light and she didn't want to go. She asked me to go with her, but of course, I wouldn't.

If you ask, Jesus or any of the Saints will come down to accompany you, but she didn't want to go. I explained how existence on the other side is even better than here and she would have a good time aaaaand she could come see me anytime. Finally, she went, and yes, she came visiting tonight, cute as pie. I also had conversations this flare with Brian's old girlfriend's mother and my great-grandmother from the Nineteenth Century, who is also sweet as honey. I check all these contacts with other psychics who have confirmed them all. Otherwise, I would believe I had headed off the deep end. It's all very strange but I do believe they're there and I would swear I have had a lot of influence on my previously Victorian family. I wish I were much better at it so I could feel more secure, but you get what you get and I'm very blessed as it is.

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Goodbye Sweet Puppy

Last Friday morning, my beloved granddog passed away. My daughter is devastated; he was a wonderful companion, a protector, and our loving friend. When she swam, he swam circles around her. Being a Jewish dog, the first time he saw a Christmas tree, we forgave him for mistaking it for a common evergreen and peeing on it. And the times he used his German Shepherd height to sidle up to the meat platters to swipe donuts and brisket. His glee at finding and chewing on my dog Big Sammy's rug of cow bones was glorious. Our granddog was Tree; strong and beautiful like a summer tree. When daughter Honey moved to South Philly, Tree stayed with us for about a month, but he'd always stayed with me.

When he was a puppy, Tree accompanied me on my job in Kensington. He was great company, listening to my assessments of properties and sharing my hamburgers and ice cream sundaes. I kept a bag of dog biscuits in the car for those ever present boring lights that Tree found objectionable. Tree protected us from stray cats, those dangerous minions wild in every community. He tolerated our little cat Sammy even though Tree couldn't understand why we would choose to share our abode with a foreign species. Tree even allowed Honey to have birds that proved to be terribly annoying. The featherless smart talking one would walk on the ground, call Tree, and then try to bite Tree's toes. One strange animal followed another. First, I, Tree's loving grandmom brought a strange dog into my house and Tree couldn't understand why I needed another dog, but Tree accepted him. Big Sammy DID come with a lot of bones and some good toys. Then, Tree's mom, Honey, this year, brought home a really wild animal, an orange kitten. This kitten is truly unlike any kitten I've ever seen and only Tree could cope with him. King Tut, the kitten, would jump on Tree, bite Tree's nose, lick Tree's face, and then play with Tree's feet. Tree mounted the cat but tolerated him pretty well. The cat is sitting in the window now waiting for Tree to come home. The African Gray who always called Tree is still calling him, and is upset that Tree isn't there. He's smart enough to know something is seriously wrong and I spent time trying to explain to the bird. We never know what they understand or not, but African Gray parrots have the intelligence of something like a five-year-old child.

I miss my Tree. Our Tree. He slept by my side, and didn't come when I called if he chose not to. He decided when and where he wanted to go, but he always wanted to go in the car. Tree had his own mind, but he was always good. He never made a mess and he waited patiently. Other dogs were his friends and so were people. He loved his family and would keep us from harm, even from those dangerous cats walking the streets. But now Tree is on the other side. Honey and I saw him with Honey's friend Dan, walking, trying to understand, and waiting the years for his family to join him. He was the best dog I've ever known and it's hard not to see him again in this life.

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Jaynee From the Past

I am a wallflower, running below the radar, darting about like a frightened loner partridge. Dressed up in bows and tight skirt with cowboy boots. Who is that strange woman? An old hippie, failing because she didn't have the guts to climb the Pentagon fence and get beaten up like Susan Greenberg. Still humbled because she was never a teacher's pet. Never picked for anything special. Not really average, but feeling less than average and thinking it's so. No Art Class in Junior High School assuming not enough talent, but betting from this vantage point, it was just not pretty enough and not a boy. And no vision from the teacher. Time was when girls carried little doctor's bags, wore blouses that came down to their knees, and skirts below them, with thick white bobby socks and loafers. Their hair was made to be set in big rollers, combed out professional and teased into bubbles or pageboy flips. Earrings were yet to come, as were ankle bracelets or even charm bracelets.

By that time, I had emotionally dropped out. I didn't realize it was okay to be different. Nobody tells us weirdos we're just not conventional, and our kind is integral to a creative living culture. All I knew at thirteen was that I didn't fit in: my clothes were hand-me-downs, my socks fell down, and my new clothes were from discount shops that absolutely did not make the cut. At thirteen, as far as I can tell, every girl needs to be a clone of every other new teenage girl as far as her eyes can see. I had no outstanding talents, no great academic abilities beyond my contemporaries' braininess, and certainly no coolness radiating from my poor little shriveled ego. Junior High School was a room-roaming prison of emotional torture for three years leading up the king of penitentiaries: Philadelphia's Northeast High School. Our grade was kept from that place for a year, sent to a new holding cell in the far northeast where gentile kids had race fights with whatever black kids found themselves in that sorry school. Instead of having to meet the sartorial criteria, girls had to watch their mouths lest they anger the big, bad, Christian warrior girls. It was a bad B movie.

Then, the next year, was Northeast, fancy and horrible, but I could walk home, and I did that. As early as possible. I didn't even eat lunch; I just went home. Was there anything good there? No, not for me. Nobody appreciated my brain, thought I could contribute anything to anyone's life including my own. I melted into the wall, the floor. My teachers, probably now all dead, were just waiting to go home too, and if they showed any interest, it was to the obviously talented kids, kids who spoke up. Never me. How many of my co-students were gifted? How many did something, anything, with their lives? How many would ever even write an article like this? How many are dead? How many ever thought of anything beyond traditional? I got pregnant as fast as I could. I was always "hot stuff" so it wasn't difficult or weird for me, and I got out of school. My cracker-jack tummy opened up and out came a Honey, the best thing yet. Surprise! I had someone to love, who loved me! I finished high school at a private school where I memorized everything and graduated about four days before Honey was born. Then I tried to be a mommy doing a pretty bad job but not knowing any better.

As the years went by and psychotherapy made inroads into my troubled psyche, I noticed there weren't as many brilliant people around as I previously thought, and people sure weren't aware either. About 30 years after that, I see that being non-traditional is healthy. Being this way lets me follow my heart. What people think isn't an issue. My guidelines are my own. I don't think I'll ever get over being ignored as a kid. I go to parties and am heart sore at the way it's shaped me. I guess it will take me another ten years to find the positive borne by the pain. I never go to reunions. I almost never recognize anybody from my past. I mean I don't know who they are; I'm not being snobby. It's a part of my brain damage from the lupus. I probably see them at the Jewish Deli in the new neighborhood where Harry recognizes people periodically. But I wouldn't know and truly, I don't want to talk with them. I have nothing to say except I made it and I'm happy, but why should they care, they're in the same place, and to them, I'm still nothing. But to me, I've made it! and my world is paradise.

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More Lupus Adventures with My Psychic Dog

February 2004

Friday dawned, I forget how clear, but I sleepily got to my job, glad to be in Center City Philly where the shopping is good, and the people are interesting. First thing that surprised me-I had no interest in coffee. Then at 10 AM, the curtain for the first act slammed down. A Central Nervous System Lupus flare hit me like the Titanic ramming my cubicle. I lay down on the incredibly filthy rug hoping no mice intended to join me or use my prednisone-thinned hair for a sun-colored nest. People kept calling me on the phone! Couldn't they see through the darn wires that I was sick! Phooey!

After a half-hour of the cement and dirty rug, when the nausea and migraine medications had failed in their assigned God-Given duty, I tried half-heartedly to fill out the little papers that tell administrative personnel you're still an employee and just leaving early because you're sick. I got to the parking lot not even looking at the clothes in Burlington Mills, but I found I'd forgotten my keys under a bunch of work papers. I trudged back, not the happiest person in the world. I couldn't believe I drove home sensibly, probably because it was only 11:00 AM and everybody else was working. All I could do was swallow Prednisone--the Lupies only rope to living--and throw myself into bed. I couldn't move or lift my head except to run into the bathroom and vomit. Yuck!

This was all very entertaining for the dog, who thought I was trying to show him some new human trick. He never saw food come OUT of my mouth and he wasn't sure if it was leftovers or what. (He's a dog. You know.) Harry was alarmed and our son was very worried that he might have to do SOMETHING for Mom. His girlfriend was worried about her escape route. (How fast could she get out? Was vomiting catching? If she married my son, would I still vomit?) I spent three days that way, waiting for the minutes to pass, the hours. I couldn't talk, couldn't eat, drink, watch even mindless TV, certainly couldn't read. I just lay flat and wished I could sleep. On Monday, I could lay on the sofa downstairs and stare at the television. I started to eat chicken soup and talk on the phone. My on-line psychic group had "read" Big Sammy, our dog, and we had a talk with him. (He insists Harry is the Big Kahuna and the best cook ever. Hint, huh?) On Tuesday, I sprained my back, and on Wednesday, I'm sitting here telling you all about it. I try to call these flares my Lupus Vacations and if I can, to buy myself something to make me feel better.

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NO DRAFT

September 2004

Here's the scoop-read my lips-No Draft!!!!!!!!!!

Our President, Vice-President, and his other assorted cronies escaped serving our country in Viet Nam by either getting multiple deferments or "serving" (some of the time) in the National Guard. The President did less than the absolute minimum and even got into the already closed National Guard through his dad's influence. Now, they send our best into harm's way. No care is given to the kids over there, or the families left here. Everybody fends for himself or herself, that is, except those in the administration.

The Vice President is actually STILL making money from Halliburton while he sends our children into war to make them a profit. Young people now know if they enter the National Guard they are volunteering to fight in Iraq, although they didn't know that a few years ago when most signed up, hoping for a college education. Sending all our National Guard troops over to fight is called a back-door draft. In the US today, a draft would call up our young women in addition to our men and deferments wouldn't be acceptable in general. Also, Canada has said they didn't want our kids running away from a draft.

The Shrub (W.) has sent our young people to die in a sovereign country he totally wrecked for no reason other than perhaps he wanted to show his father how strong he could be. Instead of just the most militant Arabs hating us, now almost all of them do. After 911, other nations wanted to work with us to fight against terrorism. Who fights with us now? Even Great Britain is withdrawing half their 7,000 troops. It's just our boys and girls in the middle of a civil war the Shrub caused. I am afraid that if W-Shrub-George W. is elected, he might have to reinstate the draft. Here's hoping his party-going daughters go first.

Of course, if he has his way cutting back funding on education and health, maybe he can just send homeless people. There will certainly be an army of them. That's assuming we aren't attacked on our soil. Truly, after the debacle in the last election and the Republican's move to have thousands of African-Americans dropped from the roles of voters in Florida, who can predict what sneaky moves the Shrub and his cohorts are planning for this election? To me, that means more people have to vote AND pay attention. You don't have to be a fan of John Kerry or the Democrats; all you need to be is pro-America. This is a republic and I hope it stays that way. Dirty tricks and sending our children to die in a foreign country where they have no business is not what Martin Luther King envisioned. Please vote.

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Rodeo Day

July 2004

For weeks, I looked forward to going down to Maryland to the rodeo. Yesterday, it was finally time and I was up really early, out the door with my girlfriend Peggy, down to our girlfriend Anna's, and off. We were going to the rodeo near Washington, D.C. to cheer for our friend Jen. In the parking lot, we met our friend Lorie and her sister and her friend; then in the actual rodeo, we found another wing of Jen's cheering section. I had never been to a rodeo and I was fascinated by all the roping, riding, and sort-of daredevil stuff. Both women and men rode the bucking broncos and bull riding as well as every other activity. One bull got so angry a man tried to ride him; he purposely stomped on the guy and didn't want to stop. Jen rode in most of the events and she was marvelous. She rides as though she's from Montana in the Pony Express flying along on the most beautiful horse you ever saw-Quinn. Jen and Quinn won for All-Around Best Cowgirl and Best Mount, in addition to winning in a lot of the events too. Jen and Quinn had the loudest happiest cheering section at the rodeo, and they deserved it. Jen survived Hodgkin's disease last year, and she competed while she was fighting it. She won too even though she had to be strapped to Quinn to ride. This is one determined, brave woman with a horse who loves her. Jen used to live in Maryland with Quinn. He'd bug her to feed him early in the morning and she'd go back to sleep with Quinn in the yard. When she awoke, she'd look up to see Quinn watching her sleep having totally covered the window in horse drool. Once all the riding and roping was done, Jen brought Quinn over to meet us. Meeting Quinn was the highlight of my day. He sensed we all like Jen and he's so devoted to her, he accepted us a little more than total strangers. We were all patting him and telling him what a great horse he was, and Quinn was surprised, but not displeased. We took a group picture, and my favorite moment was Quinn almost leaning on my shoulder, feeling big horse breaths. Loved it! And I loved the whole day.

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Sleeping Beauty

May 2004

My latest Lupus symptom is fairly benign except that I have no time to get anything done. All I do is sleep…for ten to twelve hours a night…and through the morning given half a chance. Usually, Harry returns from his morning errands, exclaiming, "You still asleep?!", when he opens the bedroom door. Of course I am, but he bribes me with brunch somewhere so I drag myself out of bed. Or he warns me I won't be able to get something done if I don't get up and going NOW. About half the time, I swim around in a fog for hours after arising. I am so tired, too tired to focus or really accomplish anything. Coffee does nothing except give me stomach pains. I really want to sleep. My lupus doctor-a rheumatologist-told me to buy an alarm clock. The internist didn't think anything of my sleeping either until I complained I was late for work all the time. Well, duh! So they're sending me for a sleep study in case I have sleep apnea, which I don't. At least, I don't think so.

Stuck with no answers from my doctors which is pretty routine, I went to the web. Daughter Honey suggested looking at the sleeping from the standpoint of the central nervous system which is what yielded the information. Excessive sleeping is called hypersomnia and apparently the autonomic nervous system, which regulates all our automatic functions, does the sleep too. It can be effected by Lupus. I have more research to do, but it looked to me as though that system had something to do with inner ear/balance problems, which is the bane of my existence. The texts also mentioned how, in small spaces, I lose my balance. It's pretty hard for me not to step on people's feet getting to my seat in the movies. And getting through the crowds on 11th Street can be a problem too. I can't change my "course" fast enough. I suppose reading and researching are what lupies must do because the docs sure don't. We rarely get answers except wrong ones for what ails us. Mostly, we get thrown into whatever category is convenient. If it's a sleep problem, it must be sleep apnea or narcolepsy. If we complain enough, we get medications and otherwise, really, we're on our own. Thank God for our families and friends, especially for me, Harry, Honey, and Brian.

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The Handicapped Life

February 2004

A few weeks back at a New Year's party, we got to talk with Robin, a disabled lady who worked for a big company that turned out to be so mean-spirited that Robin ended up having to go on disability because it was impossible for her to work. Even when lightning hit her car and she waited inside terrified because of the live electric wires circling her car, her company penalized her for being late. Stuck in a wheelchair and unable to climb the steps to the North New Jersey train station, she waited two hours to get to the tracks and used vacation time to cover her absence. Amtrak or New Jersey Transit took their time to repair the elevators and even when they worked, Robin had to wait for an operator to run the elevators for her. Without a private car, there was truly no reliable way for Robin to get to work and she couldn't afford a car.

Robin's story was so sad because here was a disabled woman who wanted to work, and with a little help, she could have done it. Companies don't consider handicapped people when they build and when the companies are forced to adapt their designs so EVERYONE can use the building, they resent spending the money. When Jaynee had to use a wheelchair, we were unable to get into and around a lot of stores. Even now, she cannot use all the Septa entrances and exits because there are only steps. Talking with Robin, I understood her frustration living a life where your legs are no good to you and you're stuck relying on a hostile world for their help. Now that I've lost some of my hearing, I too understand how we must fight for our place in the world even if the playing field will never be equal and no one will ever lend a hand. Robin has young children to raise, no husband to help her, and she fends for herself. As we finished our conversation, I knew what I needed to do to bring more light onto this subject. Most people do not think about disabled people as they go to work every morning. But all it takes is a fall, a stroke, a car accident, or an accident during a child's birth. Not much. It is truly, "There by the grace of God, go I."

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The Schools

Here's the Scoop! You been a teacher for maybe, twenty-five years and for the last ten, you've worked at a school where the kids come prepared, and the troubled kids have been pulled from the classrooms. An excellent principal, who the children, teachers, and parents alike know is on their side, maintains discipline. Now along comes the school board administration working hard to make themselves look good, and you're transferred to a troubled school where you must hug your wallet, be very careful about where and when you walk or allow less street-wise students to walk, and you must fight to teach. Every day is a battle with disruptive students who are causing mayhem. Every minute you fight to be heard, to be understood, by the students who want to learn, who have a right to an education, and cannot get it. There are no books, pens and pencils are expensive and all kids lose them anyway. Nothing is to be had for supplies and no one else cares.

Instead, you are given mandated tests that your students must pass or the school fails. Can this be? Students who can't even hear above the din going on in their own heads will cause the school to lose funding? Nothing you do as a teacher will be right in the eyes of the administration, and there is no one to tell, nowhere to get help, nowhere for sanity. Your reward for so many years of teaching…is burnout. You realize the administration and the government don't care about teachers or the students. In their misguided attempts to stuff some kind of education down some student's throat, they've filled your teaching time with impossible nonsense that is totally irrelevant. In order for your students to pass the exams they will need to graduate, you will spend your time teaching the test, including the answers, to any student who will listen. Is this why you wanted to be a teacher? No, but you have no choice. I understand all to well having spent over sixteen years in the school system. I've seen emotionally disturbed, off-in-their-own-world hateful people rewarded as principals. It felt good to retire and escape a world turned upside-down, but I feel sad for our children and our future. We have brilliant children ALL over Philadelphia and so many of them cannot get an education because either the classroom can't function with disruptive students, the teacher is really retired (in her/his mind), the parents don't realize they have to be involved, or the mania for testing has overcome the curriculum and the art of teaching.

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Shaking the Shrub Out of His Tree

July 2004

The more I see, the older I get, and the more I feel most people lie and are full of self-deception. I'm not the most sane person on earth, but I'm pretty sane and sensible and when I write stuff telling about how Harry and I stayed married for 40 years, I figure it's important to people who want to keep their relationships together. Instead, I find people focusing on surface stuff. It feels like they can't stand to see what you really have to do. I'm finding the same thing with the election. Who cares what Theresa Heinz is like? Does anybody really believe John Kerry didn't deserve his bronze star and the other Viet Nam heroism awards? And if that were true, why would anybody vote to continue killing kids for no reason in Iraq? Who but conservative idealists would want to go through four more years with the shrub?

I started to try and convince a co-worker of mine that yes, John Kerry could handle "the fight" in Iraq, and then I realized my cause was hopeless. I suppose people decide who gets their vote on some unconscious level. I wish the democrats and people on the side of peace and the pursuit of equal rights for all US citizens, would put out some advertisements to counter all the nonsense the shrub's people do. I'm afraid of our country sinking further into a backwater of illiteracy, poverty, and hopelessness. The shrubs folks don't have any idea of what's going on in poor and working class America. They think we're negligible and we don't vote anyway.

If we don't all wake up and shake them out of their trees, everybody, and I mean everybody, loses. Our kids are our future and if we're not giving them a chance at good educations and college AND jobs, then we all fail. Industry is moving out of our cities to other countries and it's killing us. Companies are cutting jobs and cooking the books and nobody throws the owners in jail. The stockholders money is siphoned off to build castles in Florida and all that happens is old people eat less and can't buy medicine. Everybody knows medical care should be free and politics and big money is stopping it. How is this right? Every other industrialized nation has free medical care and medication. What kind of country is this? Where are we headed? I think this country is mean-spirited and oriented only toward making money. It's heart breaking.

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B-Square or Be Sick

Last night was the reception for my newest art exhibit, and it went very well. The show is at the B-Square Gallery, at 614 South 9th Street, just South of South Street. It’s a beautiful little gallery and I like the owner a lot. I trust her and the older I get, the more important I find that to be. A large group of my friends and models came to celebrate with me in addition to sharing a festive luncheon at a nearby trattoria before the opening. I couldn’t get to my friend’s birthday party afterward though because I was just too ill. This has been my sickest week for at least two years. I’ve spent whole days staring at the ceiling, waiting for the hours to pass, urging on the night hoping I would sleep. If I moved my head a millimeter, the nausea and dizziness were overwhelming, and no medication seemed to help. Sometimes they seemed to make it worse. Was it a flare? A virus? I forgot I’d been nauseous for weeks before but blamed it on antibiotics I’d had to take for gum surgery. I’m not afraid of horrific illness; I know that’s not what’s wrong. It’s not even my gallbladder. It’s just lupus playing the old pretending game.

Harry and I have been packing all day because tomorrow we leave for a two-week vacation in Florida. Harry’s frail elderly aunts and one uncle are there and my sweet Harry doesn’t want to go without his Jaynee, so away I’m going! I made wonderful reservations at tropically planted lush hotels so it’s not like a sacrifice. If I feel half-decent, it will be fun. I’m bringing my drawing pad and pencils and I do love to draw plants and the ocean. I’m a happy flier too; I think I’m back at the Willow Grove amusement park in 1958. That’s a vacation in itself.

Our dog, Big Sammy, is trying to forget we’re packing, looking woefully at the bags and then at us. I keep telling him how many “suns” and that our son Brian will be his dog sitter. So far, he’s content, if worried. They understand. Our cat doesn’t, but he’s senile.

So that’s my life before retirement. It’s a good one and normally, I’m very grateful. But this week, I haven’t meditated, haven’t prayed except basics. It’s been a hard, hard week. I guess, better luck next week.

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Losing Your Mind and Your Teeth

This week, Jaynee writes about her new hobby.

On Tuesday, I lost my dental bridge. It probably resides somewhere in our house, but since Harry and I tore the entire house and car apart searching for it, the bridge might as well be on London Bridge. The next day, I wanted to show daughter Honey my newest drawing in my small drawing book and the book had disappeared. I’m assuming the book and teeth ran off together to somewhere romantic. They have all the lost money and socks they could hope for. That, of course, is in addition to my frequently lost skirts, shoes, drawing pens, erasers and stuff and various other missing items. I am like the house loser. Everyone knows not to entrust me with his or her valuables. My grandmother’s dinner ring, the only gorgeous diamond ring I would ever hope to own, found it’s way into my never-never-land. Honey had been waiting for it, but the poor thing never made it onto her pretty fingers. Now my wedding ring and wedding ring guard with little diamonds have left the earth via my loss. I no longer buy diamonds, not that I ever did. I like cubic zirconia just as much and they’re cheap. When I lose jewelry, I grieve because I like my pieces so much, but when they’re worth hundreds and hundreds of dollars, I feel worse.

I try to always deposit my stuff in the same place every day and that helps a lot. I like having everything in front of me. In my office, all my papers, boxes, forms, cards, etc. are out and I can see them. When I need something, I can find it usually. I even have boxes in which I labeled my cards and postcards. It’s a system that works for me. Downstairs, I try to do that but invariably somebody neatens up and moves my stuff. They put their stuff on top of my stuff and put it all on a dining room chair. Then I freak out. Not only can I not see my stuff, I can’t get to my boxes of artwork or supplies. I don’t remember what artwork I did let alone what I have. Who did I sell to? Who owes me what? Are those facts important? Maybe it’s because I’m an artist; maybe it’s the lupus; or it might just be that I never cared about that stuff. I can’t remember.

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Shopping Therapy

Yesterday, I went out for some Shoe Therapy. I was feeling a little down, passed a new shoe store, and I realized shoe therapy was the key to feeling better. I dropped Harry off at home, and zipped back to the new store. It turned out not to be a good pick, but not finding a spectacular pair of new shoes was not important. It was the shopping that was fun. Women know shopping is therapeutic. There is shoe therapy, clothes therapy, gown therapy that can make a woman feel like a queen, hat therapy, handbag therapy etc. Shopping for food is not therapeutic, but eating out is.

In order for shopping to be therapeutic, we can’t be uncomfortable. We don’t want to walk too far in the rain, for instance. There needs to be sufficient sales help. Walking blocks in the store looking for someone to ring up the sale puts a dent in feeling good. A store with only sizes you can’t fit into is not fun either. Ten stores with clothes you can’t fit into is a neighborhood to which you don’t return. Items priced so high you would never buy them is out too. If we desperately need something for an affair this coming Saturday, having to hit three stores, trying on dress after dress with nothing looking right, is not fun either. But knowing you already have a dress and looking for something better might be exciting, especially if you find something special.

That’s therapeutic! Trying on ten pairs each of snazzy shoes at two shoe stores on Chestnut Street is terrific. I know I don’t have to buy anything. I can try them on and think about how they looked for a couple of days. Knowing they’re out there to buy and wear feels good. Shoe therapy. Same with hats, although they are not usually there when you go back to buy. You take a chance with dresses and skirts too, especially if you are not a size 8. Discount and sale shopping therapy can be the most therapeutic of shopping. Finding the perfect item at 75% off the regular price, perhaps $12.00 for a pair of fabulous shoes that will match your dress perfectly, is a wonderful experience. Lying on a therapist’s couch for an hour couldn’t generate more happiness.

The benefits of shopping therapy, alas, are transient. We have to regularly renew their good effects, and sometimes our pocketbooks are slim. That’s the bad part. It’s fun while it lasts, but it can get us into big trouble. I guess it’s best to dole out the shopping therapy carefully and find other ways to feel good.

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Luping Out to Las Vegas!

Jaynee writes this week about lupus….A few months ago, I gave up Plaquenil, the anti-malarial that sustains many of us Lupies with extra energy and less joint pain, rashes, headaches, and assorted lupus goodies. It takes months for Plaquenil to work and months to stop working. The retinal maculopathy I got from Plaquenil got a tiny bit worse, but it’s very slight. Meanwhile, most of my major joints hurt, I have migraines that don’t go away, and I’ve got less energy. I’m also giving up Prednisone, our Lupus steroid-of-choice, and usually the only drug that will stop runaway inflammation. My doctors had kept me on it for years because I take up to 80 mgs. When I flare, but the newer research says it’s best to come off, even if you have to go up and down. So now, I feel half-dead. Buuuuuut, I’m alive and kicking.

Harry and I are cutting down on our love affair with food, trying to limit our portions and our devotion to desserts. We’re going out less, or maybe that’s just the recent snows, but we’re losing weight. In two weeks, we’ll be vacationing in Las Vegas with my brother and his friend. I can’t guarantee I won’t eat sugary desserts, but I can state that I’ll have a good time regardless of seizures, headaches, joint pain, or whatever lupus brings. The important thing to remember with chronic illness is to live, and live the best you can. We have to be good to ourselves and give as much as we’re able to others. Living the good life means everything.

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Las Vegas Without Really Gambling

Air Worst...and away we go...! This week Jaynee writes about our Las Vegas vacation. Once on the plane, while the sky lightened, the friendly flyers around us proceeded to get drunk, and then stand through almost the whole plane waiting in line for the one bathroom. The seats were great for a 120 pound 5’3” woman, and the sodas were very filling so no food was needed nor offered. Nowadays, smart travelers bring a bag of food with their bags onto the airplane. I carried books, magazines, and all manner of junk food. So the flights were “special!”

Once we were in sunny Las Vegas, at the Mirage, we were surprised at the incredible variety of the people. From the very rich to the poor were there at the casino and on the strip. Las Vegas had changed too from twenty years ago. Now, casinos go almost from Las Vegas city out to the end of the strip, with casinos three blocks long. Every casino seemed to have a shopping mall with expensive shops and restaurants. My favorite was across the street from the Mirage, it was the Venetian. The façade was, I thought, the most beautiful, and the shopping mall had a small lake with gondolas and singing gondoliers. Harry and I ate at most of those wonderful restaurants until I just couldn’t eat any more. My brother and his friend drove in from Los Angeles for two days and we spent time with them which was great for me. They had made reservations for the show, “Jubilee”, and we later saw “Zoomania” with the Cirque de Soleil. Both were perfectly done, as good as Broadway musicals. Every casino has at least one show and there are hundreds of casinos. And Harry and I probably spent about $5.00 gambling on the $.02 and $.05 slot machines. He won back about $22. And we’re not gamblers anyhow.

The strip and the casinos themselves got really crowded at night. It felt like Manhattan at lunch-time. Harry and I, on Sunday night, couldn’t get up to our room fast enough. And the room, even though it cost a mint, didn’t have HBO or any of the premium stations.

Las Vegas was a fun vacation, with two great shows. There would have been a third if I hadn’t overslept, but it was good anyhow. Getting out of Philly’s winter even for a weekend is a joy.

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Living a Day in the Emergency Room

Today, Jaynee tells our tale of Thursday... We spent today at Frankford Hospital in the Emergency Room with Harry’s eighty-four year-old mom. Lately, I’ve become involved in her care because both she and Harry are hard-of-hearing and talking on the phone for Harry is kind of hit-or-miss. One never knows who really called or what they actually said. So I knew Harry’s mom was in trouble and when the intake nurse noted words the senior Mrs. Polis did not say, I insisted on their correction. (I don’t think they were though anyway.) Even though his mom has had heart surgery, anemia, can’t eat, and started to have way worse problems today, she was sent home. The hospital doctor never called her specialist who told her to go to the Emergency Room and I wonder what information the doctor he did talk to was given. That poor woman would be dead if it weren’t for Harry. He takes her to her doctor’s appointments, gets her medicine ready a week at a time, buys her groceries, arranges for any and all services and does all her paperwork. She worries anyway. But I’m good at soothing; Harry gets aggravated. Being old in America is hard. Without adult kids to care for the elderly, the care is haphazard at best. Medicine is so expensive, it’s criminal. Mrs. Polis still gets triple digit hospital bills she’ll never be able to pay on her meager social security. This is insane. We adopted a cat for her last year; Pumpkin was on her mind all day. All she wanted to do was go home and give Pumpkin his dinner. This cat doesn’t miss a meal—ever. I was sure he was a couch potato until the other day when I sat on the floor with him; he bit me for checking out his ears which turned out to be infected. Before the hospital day came up, we were scheduled to take Mr. Pumpkin to the veterinarian. Hopefully, he’ll get there tomorrow and I’m sure he won’t be a happy cat. Nevertheless, having Pumpkin has been a very happy experience for Harry’s mom. He’s got spotless kitty litter and chooses his favorite food through ignoring the kind he doesn’t like. Our son Brian and his girlfriend Christina came running to the hospital today too. Little things like the love of grandchildren, the support of her children, and the “devotion” of a golden tabby can make life worth living. I hope.

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Lupus Seizures

Our New Year's weekend was spectacular for me; I was so excited and happy, I hardly slept and kept socializing and dancing when my body clearly was crying for sleep. When Harry and I got home, I paid for that exhaustion with a lupus flare. Perhaps because I was so excited even before we left, I'd experienced what I thought was my first seizure that Thursday. I believe I'd had many seizures previously, but I didn't know that's what they were. That Thursday night, while I lay in bed, suddenly my body was paralyzed. I knew it was a seizure right away. A couple of nights later, I had what is called a myoclonic seizure, where my arms seemed to do the "chicken Dance" by themselves. The first seizure was called a simple partial seizure because it involved only one part of my brain and because I was conscious. The next seizure was called a sensory seizure because I went blind temporarily. Last night, my face was paralyzed and I finally sensed an aura, which people say is important because it's a warning. It looked to me like a rainbow but I guess it varies according to the person seeing the aura.

Naturally, I'm very frightened right now because I haven't worked out a treatment plan with my doctors and this new symptom represents a deepening of the lupus stranglehold on me. I still have a mild form of a devastating disease. Women die from lupus. It's easy to dismiss migraines and seizures as nerves, or just sleep disturbances, but they cause brain damage. Lately I've been forgetting words much more often than before. That could be stress from this situation or it could be the daily migraines from the flare, or the seizures. No one knows, especially me.

I try to stay abreast of all the new lupus information and studies; after all, I'm my only "patient." There are studies being done in New York (and other places) on CNS, and there are scientific studies we can read on the web. I don't pay attention to any quack cures--I've tried them and they didn't work. But I do listen carefully to the lupus experts around the world and try to get the information to my doctors. After false starts and a number of doctors who left private practice or medicine altogether, I've found doctors I trust. Central Nervous System Lupus is still the least-known area of lupus. There are few medications available and it's difficult to discern what is Lupus initially from stress, or other causes.

The tests are still not extant that will identify CNS, and once symptoms start to occur, the patient has to be able to accurately describe them to her doctors, and have a doctor who listens. Perhaps the best advice I can give is to set up a support system--family, friends, and doctors. I don't worry about housework much, but I do stress over my artwork. It's best to let God handle what you can get done. Maybe with Lupus, we'd fare well if we work closely with our doctors and our family and friends, and then muster up whatever belief system we have. Prayer, self-acceptance, and love go a long way in the war with lupus.

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Retiring

This past May I experienced one of my Lupus flares and went up to thirty-five milligrams of prednisone to stop the inflammation in my nervous system and allow me to function again. Doing that is something I've grown used to and even getting sick at work when I re-flared, although I did get scared and felt little and vulnerable, is still within the realm of what's been happening for years.

But when I started to decrease the prednisone, I had a new experience. I felt high all the time, as though I was on some kind of speed or terribly drunk all day, every day. Prednisone must be gradually decreased very carefully and it crosses the blood-brain barrier. Mania, depression, and all kinds of personality changes are common with prednisone, in addition to the purely physical problems it often causes. I complained to my doctors who didn't seem to feel being high all the time was a problem although my family and friends were alarmed. I warned folks at work who proceeded to become more and more worried about me.

Finally, when I persisted in decreasing the drug even though I was getting very sick at the very low doses, I found I could no longer function at all. At that point, I couldn't get out of bed, eat, call the doctor, or hardly talk. I was never so scared in my entire life. It took about a week or two of increasing the prednisone again for me to contact my rheumatologist who worked with me to bring ME back. August went down the tubes mostly in bed and lying on the new sofa sleeping or watching daytime TV. I doubted I would ever be myself again and by the end of the month, decided to retire early.

Harry's still driving and I'm not back to doing most of the activities I love like painting yet, but I do feel like me finally. My job was easy and I regret having to leave. I lose money, but I think allowing myself to sleep later and recover at my own speed is worth it. Lupus has been a specter in my work life for years causing me difficulties with the work and the grind in general. And I think work has probably been spurring on the lupus to some extent. It's time to call it quits. Goodbye to some things I loved like shopping in Center City, buying grits and eggs on the corner for breakfast, and just walking to the bookstores and everywhere else. I'll still go in town, but not as much, and right now, not alone. Nevertheless, I feel I'm one of the lucky ones. I know lots of lupies who are much more sick, and I'm able to retire. Thank you God.

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Galleries and Why Not...

I’ve drawn since I was about seven or eight, studied Art at Tyler, Fleisher Art Memorial and the Pa. Academy of Fine Arts of which I’m very proud. I’ve exhibited for years and I’m lucky enough to have other people celebrate my work with me. They often buy or commission pieces, and for an artist, I consider myself to be highly successful.

I refuse to pay for galleries to look at my slides, or even to make slides for a show. Most of my equipment balks at doing slides, and the process is inordinately expensive and out-dated. It galls me to pay a gallery 40 or 50% of anything that sells and too frequently, the gallery owners act as though they created the work. I have to sit through their horrendous hanging of my work and lack of advertisement. My time is wasted and my limited amount of energy is decimated.

I am partially disabled by lupus; my energy is decreased, and certainly my memory is poor. Perhaps if I were normal, I wouldn’t feel the same way. I don’t know. I do know that too often when I’ve entrusted my work even to other artists who owned galleries, I have had to either call over and over, eventually asking a friend to go get my work back after a show at a time when I could “get an appointment” to return my work. I’ve had to beg the Chamber of Commerce in the Canadian Rockies to go to a gallery to get the owner to return my work. And closer to home, even with artist-owned galleries, frames come back scratched and, once, torn canvas. I do still show at some galleries; I try to judge by the people and not the space, or anything about the critical art world.

I find it offensive espousing critics from New York as in any way a criteria of judgment. I’ve lost the point of trying to get to New York or impressing anyone in particular. I’m an artist, not because a gallery owner or some other artist deems me so. Interested people simply visit my studio or website and buy from me directly. At fifty-two years old, with neurological problems and knowing nothing about computers, I build a website from scratch for my artwork, (and one for my SCOOP USA columnist husband, Harry.)

I believe artists might do better to start moving away from galleries in general, and representing themselves. It’s honest and it’s cheaper for the artist. Okay, the New York dream has to be put to bed, but being an artist every day of my life wherever I am isn’t so bad.

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The Angst of Diabetes and Dieting

Today I started a diet. I hope I'm finished making excuses for my food choices, overeating and dessert. I think what's precipitated this was a series of articles on Diabetes in the New York Times describing my behavior exactly and if you read between the lines, it predicts a scary future first with shots of insulin, and then heart disease, possibly loss of limbs and my eyesight. And that's in addition to all kinds of other upsetting problems. The articles have been saying a lot but what got to me I think, was people like me eating up to their medications and eventually having to proceed to the next level. My brother is now on insulin and his glucose levels frequently go to 300, which is very unsafe. He's had numerous foot surgeries that took forever to heal; an infection of his eye socket a couple of years ago; and the other day his eyes were too blurry to see right. I worry about him; Diabetes is insidious.

Today the Science Times was citing a study on the connection between heart disease and Diabetes. Researchers are finding frequently heart disease is present silently when Diabetes is discovered. Also arteriosclerosis. The article explained the close connection between all of them. I've been reading all along about the diabetics preponderance for heart disease and strokes. Lupies have that too, and taking steroids, a huge number of us have Diabetes too. It's easy to be in denial; Diabetes doesn't feel like anything, and if you're very lucky, neither does lupus. I felt good today but I didn't go too overboard with my food. My dessert was low calorie and low fat and I had only one. Yes, I feel fat and I'm concerned about my health. There's so much that isn't understood in our bodies, but it's obvious that overeating with diabetes is dangerous. Maybe you think medical science is highly advanced, but I think it's still barbaric. Your foot gets gangrene so they cut it off. One medicine for lupus? And doctors know almost nothing about central nervous system lupus. And are all doctors up on the latest news? Ha! It's a battle we have to fight ourselves, reluctantly I know--well, kicking and screaming. When we lose there's no doctor who will be able to fix our failure. It's just us and a battle we don't want to fight.

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The Frustration of CNS Lupus

I feel frustrated when I can't fathom something like "feeds" for my blog--at http://painterjayne.blogspot.com--or how to properly address an email to my lupus group. I tried to send Seasons Greetings, I think, four times only to have them go unpublished because I couldn't figure out what the group's owner was directing me to do and she couldn't imagine that I didn't understand. What is it with people? Why do people think you "should" know what they are trying to say, or what they mean? When people talk with me, they hear how well I speak and they assume I can do anything. Well, no, I can't. My doctors do it and so do the detail-oriented folks at that lupus group. (I'm annoyed with them. They freak at colored backgrounds! I never knew the 'box' was so small.)

The other day I finally received my neuropsychological evaluation and it seems the PhD. was so impressed with my verbal intelligence, he couldn't imagine there was anything wrong with me cognitively. I want to know how many people forget how their spigots work, what their neighborhoods or people they just met look like. Do other people lose jewelry as quickly as pens or phone numbers? I do. I put things down, learn names and information and then they're gone, and it feels like I'm staring at white walls for six months or forever. I have great recall until it's gone. I do have a very good mind, but it comes and goes. Recently, it's been working better, probably because I'm not working at something other than painting. That's a gift, I know.

My daughter Honey says to not worry; we influence events negatively when we worry about them. Every night I tell myself I'm in perfect health, physically, emotionally, and mentally. Honey says that will help me and it can't hurt. I've traced down through the computer why my heart races when I'm not exercising; why I was having trouble breathing and swallowing for a while; my diminished reflexes and other problems to my autonomic system. That's part of the peripheral nervous system. One of the pieces I read the other day noted that frequently central nervous system problems arise when there are lupus is otherwise inactive. My doctors will never hear me tell them that, but I know.

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My Hair is Falling Out!

my hair started falling out by the fistful so I spent a morning on here researching my two newest medications and found they both bestow that side-effect, rarely, but it happens. I immediately stopped the Mysoline, which was for my tremor. Better shaky hands than a bald head. And I called the shrink--(which every lupie with half a brain should have because prednisone crosses the blood-brain barrier and lupus itself can make you crazy)--who prescribes the other hair dissolver--Lamictal. In the end, he cut the dosage and hopefully, my hair will get the message.

We Americans are so freaked by psychotherapy and all that stuff and it's so self-destructive. No, I didn't want to go to a psychiatrist but I finally realized my regular doctors were prescribing medications which had all these psychological side-effects and the docs themselves didn't know anything about the side-effects. That was in addition to what they didn't know about Central Nervous System Lupus, which is mostly everything. At least the shrink knows about what prednisone and lupus can do to your head and that's quite a relief when you think you're going nuts. Or having seizures, or can't wake up in the morning, or work anymore. It's almost 11:30 PM and I borrowed some good books from the Philly library. I can still read. I couldn't for a while and had to build back up to normal books.. Now, I've even ordered The March by Doctorow. Sounds like the brain is working better that way at least. So, off to bed and my book.

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