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ABSTRACTS |
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EXHIBITS |
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HOME |
| 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 is a 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. |
Love and hugs,
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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. |
THIRD, UGH, LUPUS FLARE SINCE JANUARY
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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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. |
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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.
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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. Copyright 2001 by Jaynee Levy-PolisTop |
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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. |
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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. |
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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.
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. |
This article appeared in SCOOP, USA, in February, 1999. 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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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. Copyright 2003 by Harry Martin Polis Harry is available for lectures and entertainment with stories and poetry. Contact SCOOP USA, or e-mail Harry. Top |
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| Animal Stories Lupus Links follow articles |
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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. |
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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. TOPTop
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(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.Top |
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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. TOP |
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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. |
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This week, Jaynee talks about Brian’s high school graduation.
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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.
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This week Jaynee
writes about her recent Lupus experiences. 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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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. Top |
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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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*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 pl |
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.