Hell and Damnation :OR: Trials and Tribulations of the Diseased 2

A continuation of the writing I started the other day. Felt as though I needed to finish my thought on the very physical manifestation of the monster that is my lupus.....


Its skin shines off the distant light, smooth and hairless. A black so dark that hints of blue and purple shimmer as it moves to take me. Almost as if beauty lies within the dark shades of its skin. A dark that comforts me most days, a dark that gives me warmth, keeps me safe. And in the same breath, snatches the breath from my throat, chocking the life from me, chocking the life from body. Bringing claw to flesh to darkness to swallow me whole, swallow me into the dank air.
It pulls hard and fast, almost to quick for a reaction right away. And I. I am never quick enough to react. Who could be? The claws are long and sharp. A wrong twist or turn could split open a vein, cutting away more of my mortality.

It's voice though is smooth. As smooth and beautiful as its blue blackness. Sweet and sickly like too much honey, it shivers the lining of my soul, warming my flesh into inflammation and pain. A slow throbbing ache brought on by the melodic chanting of its voice. A Rapture-like thrumming, like the chime of the end time trumpets. It calls to me.

"Eman," it whispers. A slow winding river of that sickly sweet honey. "Eman, let me in."

Sing-song in it's approach, the sickness is tempting. Creeping up slowly, clawing quietly as it makes its way towards me. Its voice disguised as something good. As a means to an end. And that is what it means to do. End the "suffering" it causes and that life causes. That is what it wants to be let into. Into the depths of my soul to unleash me into and back to the earth and heavens from whence I came. That is its desire. After all, that is what the Lupus is. That is what it means. That is what it does. It attacks me. It treats my body, my blood, my heart, me as if I am the enemy. As if I am a sickness. As if I am the disease that needs to be fought. And it fights hard. Because what match am I against claws and strength and darkness. It's everywhere, surrounding and all knowing. And I am solitary and knowing only what a human can know.

"Eman, let me in. Let me do what must be done." Sssssickly sweet is its voice. You almost want to let it take you. Like the cool rush of pain and pleasure from a bite. Almost too much, almost not enough. Almost wanting the bite to be harder, to draw blood, to drain you of life. Almost. Almost. But never entirely. Never. Or maybe the temptation is too great. The voice too sweet to deny. The bite too drawing in its darkness to resist.

There is one difference though. There is NEVER any pleasure in the pain I endure from the darkness that is my Lupus. Never anything tempting me to want to dive deeper into it. I'd rather it the tempting fangs of an evil vampire ready to strike, to kill me, than this god forsaken disease which wishes to kill me off this planet. That is its desire. Because, after all, that is its nature. Who am I to deny nature? I usual circumstances, I'd be fine with letting nature take its course, only this is my life.

It beckons for me to do so though. It whispers to me through the dark, making death sound so sweet. Soothing and cooing me through dreams of lying in coffins and eulogies. And if sweetness doesn't work on it, that is when I am snatched from my surroundings and pulled under by claws and darkness. That is when sharp nails grab into my flesh, bruising and bleeding me. Attacking heart and spleen and brain and joints and muscles and bones and sanity. Attacking all of me, leaving me weak and hopeless after the fight.

It toys with me, making me think I've maybe won after getting away for a moment. But there is no winning. It is the master of the game. It is in charge. It made the game, nows every rule, every passage, every way to play. There is no winning for me. I'm not even sure what the game is in the first place, so how can I play?

But the battle goes on. So it goes and goes and goes.........

May 7th 1983- A Wedding took place

It's May 7th, 1983 and Evonne Walton took her vows with Firas Hamzeh Rimawi and became Mrs. Rimawi, his second wife after the first one didn't work out so well.

I don't know anything about his first wife. Only that she was Indian (from where I don't know). I'm sure if they had children, I would have known. I think. 

Their smiles are so hopeful. So full of the promise of a new marriage. They'd known each other for a while by then. And by then it was "okay" for them to marry. In this picture, she's 17 and he's 25. They loved each other very much. Wanted to be parents. Wanted to have a wonderful life together. She wanted freedom from my Grandmother. He wanted to have the American Dream. 

Less than a year later I was born April 23rd. Their first child. The bearer of their hopes and dreams and all that. A year a half after, my little brother was born July 9th. Also a bearer of their hopes and dreams. My fathers first son. His pride and joy. His mini-me. My mother lost children on the way. Siblings that I'll see on the other side. Siblings that never got to bear the brunt of this life. Siblings that were possibly reincarnated into other children, into cats, into trees, into air. Then the last of my mothers children was born September 20th 1989, my little sister. A prediction I foretold before anyone knew who she'd be. I just knew. 

My parents had also been separated before her birth and then again a little while after. Too strong willed to let their love help them through it. 

My father had another child in Jan 1998 with his third wife. I haven't seen my youngest brother since he was about 4 or 5 months old. After my father passed away, she decided to go back to Palestine.

So much has happened since those vows 25 years ago. A lot can happen in 25 years. People are born. They get old. They change. No longer bearers of affection. Gaining scars and scabs and tracks along the skin. No longer fresh, no longer doe eyed.....

Hell and Damnation :OR: Trials and Tribulations of the Diseased 1

Should we be afraid of some kind of eternal hell? Is it not a worse punishment to be left to suffer with your own fragile mortality? Especially if you are alone, if you are sick, if you are already being tormented, already in pain. Isn't that already a living hell?
Daily pain. Daily torment. Daily solitude. Is that not hell?

I sometimes feel as though I am trapped in the hell of my body. Trapped with a sickness that only tears me apart, brings me down farther into the depths of darkness. Every time I feel I've brought myself back up, every time I feel as though I've come through another hurtle, it grabs me by the ankles while I'm watching my back for other things hiding in the dark and drags me kicking and screaming and biting and clawing. It drags me deeper and deeper into the dark abyss. Farther from the light, farther from those who are screaming out my name trying to save me, farther from the goodness and love and compassion and warmth that is in me. I struggle, fight against it. Sometimes breaking loose. Until it grabs me again, digging into the meat of my skin as its grip gets stronger, gets tighter, squeezes harder.

Do you know what it looks like? What it smells like? What it feels like? The claws are long and black, sharp and shiny like the corners of an obsidian blade. Beautiful and deadly. Ragged and smooth. It's claws are attached to long black fingers. Thin and arched for attack. Its skin shines off the distant light, smooth and hairless. A black so dark that hints of blue and purple shimmer as it moves to take me. Almost as if beauty lies within the dark shades of its skin......

Is opening up to love and trust worth it?

Is it? Or will be all end up as tragic as any who succumbed wholly to it? Tragic a love as any, when we give ourselves wholly, it's... what is it?

Should we ever, ever trust so much in another individual as to give them access into our hearts, into our fears, in to our most vulnerable thoughts, moments and fears? Is it worth the possibility of them betraying your trust? Is it worth the possibility of having them break your heart into pieces, leaving you unwilling to ever trust again? Is opening up to anyone so wholly worth it at all?
Tristan and Isolde, Romeo and Juliet, Nicolas and Natalie to name a few. Complete and utter love. Complete and utter passion. Complete and utter tragedy. And they're the one's who claimed to be "true" to one another.

Why bother with any of it? You want to end up a tragedy? Want to end up with a broken heart? Want to pour your whole heart and soul out to someone just to have them tear your heart from your chest and crush it before your eyes? Why?

Am I going to bother anymore?

What do you think?

I have better things to do with my time.

In the end, we're all alone anyway. Might as well keep it that way to begin with. Go about your business, doing what needs to be done in your life, being happy with the things that you're doing. Love is a tricky, messy thing. Might as well avoid it at all costs.

What will I be doing that is better with my time?

You'll see.

Shingles and Lupus

Apparently women who have lupus who have also had chicken pox are at an EVEN HIGHER risk of developing shingles because of our lupus flaring it up.

http://dailystrength.org/c/Lupus/forum/2787444-oh-no-shingles

http://www.wehavelupus.com/message-board-forum/about2103.html

http://www.mothering.com/discussions/archive/index.php/t-600067.html

Kind of crazy when you think about it. Some of the women on these boards have had it SEVERAL times. Can you imagine having this, this OR THIS more than once????? I know I can't. This one time is more than enough for me. Damn man! That's some shit.

What's interesting is that there is something that is part of the Chicken Pox virus (which is the same virus that shingles has) that is related to causing flare up's of auto immune diseases. Some of the women on these boards didn't have their first flares with lupus until after their chicken pox. Some a while after, some directly after. Is it something about the virus itself? The virus and chicken pox apparently puts you at risk for a secondary infection and since your immune system is weakened it could lead to a flare up of lupus (which is also already in your body due to being inherited) or some other auto immune disorder. A very interesting thought.

http://cerebel.com/lupus/lupus_question.php?q=7497
One site here though says that there's no "proof" that there's a link between the shingles and the lupus, BUT I feel as though there is plenty of proof through all the stories and listings of women who have lupus AND other auto immune disease AND are taking immunosuppressant drugs AND have had shingles dozens of times. I'm sorry, but that is just NOT a normal thing for anyone.

And what the hell kind of medieval shit is shingles anyway? I feel like a god damn wench or something. Of course it's on the side of my torso, so no one has to see it, but still. This is some painful ass shit. Here I thought that my lupus had thrown me everything it was ever going to throw me in terms of painful things or bad flares. It still gets bad, but I know how bad it can get. AND I thought that was bad, but no, this shit is far worse. I'd prefer to limp around on my bad hip over this any day. Besides the blisters on my side, the pain in my back and my side is just unbearable. I've had to be high as a kite for days now just to do things. And I can hardly do things because I'm purple hazed. Fucked up.

No site or anyone can tell me there's no connection between how fucked up the lupus has my immune system and this virus being flared up to cause this. There is some kind of connection between auto immune disorders and viruses that cause shingles and fucked up shit like it.

Ok. There's my rant for now. Back to the show for now

Some Headlines In World News Today

http://news.bbc.co.uk/2/hi/middle_east/7575782.stm

(So says BBC news)

Israel has agreed to change the route of the controversial barrier it is building in and around the West Bank.

The deal will leave Palestinians more land near the largest Israeli settlement, Maale Adumim.
The decision came in response to complaints lodged by Palestinians with the Israeli High Court.
The Israeli government says it will move the barrier closer to the settlement to allow 400 hectares of Palestinian land to remain untouched. Maale Adumim is built on land claimed by the Palestinians for a future state and, like all settlements, is considered illegal under international law - although Israel rejects this. The Palestinians say the barrier violates their freedom of movement and robs them of their land, while Israel says it is needed to stop militant attacks.

Controversy
Israel began building the West Bank barrier in 2002. It has been widely criticised internationally for looping into Palestinian areas around Israeli settlements, rather than following the Green Line, which marks the boundary that separates Israel from the West Bank. The International Court of Justice ruled in 2004 that the barrier is illegal where it cuts into the West Bank and called for it to be pulled down. Only two of five changes of route ordered previously by the High Court have been carried out by the Israeli government.

UK bank gets Egyptian investment

Panmure thinks the move will provide access to new clients

Panmure Gordon, the British stockbroker and investment bank, has announced a large Egyptian bank will buy a share in its business for £3.2m.

EFG-Hermes, Egypt's largest investment bank by market value, has agreed to acquire 9.97% of Panmure. EFG-Hermes will pay £3.2m cash for some 6.7 million new shares at 47p each.

Panmure chairman Tony Caplin said the move was a good opportunity for each company to access the other's customer base and create new business streams.

"The markets we operate in are becoming more international and the opportunities available through a business relationship with EFG-Hermes are compelling," added Mr Caplin.

EFG-Hermes' chairman, Hassan Heikel, said the purchase would strengthen its strategy to service its Middle Eastern client base. Panmure Gordon has been in operation as a corporate and institutional stockbroker and investment bank for 130 years. It has a US subsidiary, ThinkPanmure, and about 280 employees in eight cities in the UK and the US. EFG-Hermes' clients include governments, corporations and individual investors. In June 2008, it had a market capitalisation of more than $3.5bn (£1.9bn). It employs 700 people and services clients from 13 offices in the Middle East and North Africa.

Scores killed in Somali clashes

Bakara market was also bombed on Tuesday

At least 50 people have reportedly been killed in clashes in the Somali capital Mogadishu and the port of Kismayo.

Some 30 people have been killed in two days of fierce fighting between Islamists and a clan militia in Kismayo, a BBC reporter says. Some mortars landed near the compound of President Abdullahi Yusuf, who is currently out of the country. Another landed near a mosque in the busy Bakara market, killing at least six people, a witness told the BBC.

At least 3,000 people are reported to have fled the fighting around Kismayo.
Witnesses say that after the mortars landed in Bakara and near the president's compound, government troops and their Ethiopian allies opened fire, killing several civilians.

One witness told the BBC that the mortar landed outside the mosque as people were preparing for prayers. He said that the wounded could not be evacuated for some time because of the horrific scenes. Ethiopian troops entered Somalia in December 2006, to oust Islamist forces from Mogadishu. Somalia has been without a functioning national government since 1991 and has suffered ongoing civil strife. The UN's World Food Programme is expanding its programme to feed 2.4 million people in Somalia by the end of the year.

Nigerian faces death for 86 wives

Mr Bello Abubakar challenged Muslim scholars two weeks ago

Nigeria's Islamic authority has told the man who has 86 wives to choose only four and repent within three days or else he will be sentenced to death.

The Jamatu Nasril Islam (JNI) passed their verdict on Mohammed Bello Abubakar, 84, according to Sharia law.
This comes two weeks after the Nigerian press and the BBC reported on the case. Talking to the media then, Mr Abubakar challenged Muslim scholars, saying there is no punishment stated in the Koran for having more than four wives.
However, Mr Abubakar advised other men not to follow his example and marry 86 women.

No limit

The former teacher and Muslim preacher lives in Niger State with his wives and at least 170 children, and says he is able to cope only with the help of God. "A man with 10 wives would collapse and die, but my own power is given by Allah. That is why I have been able to control 86 of them," he told the BBC. Most Muslim scholars agree that a man is allowed to have four wives, as long as he can treat them equally. But Mr Bello Abubakar told the BBC: "To my understanding the Koran does not place a limit and it is up to what your own power, your own endowment and ability allows.

"God did not say what the punishment should be for a man who has more than four wives, but he was specific about the punishment for fornication and adultery." Niger is one of the Muslim majority states to have reintroduced Sharia punishments since 2000.Several people have been sentenced to death for adultery by Sharia courts but none of these sentences have been carried out.

Well, I guess it's crazy all over the dang world, huh?

i have fu*king shingles!

yep, thats right. lupus induced shingles. First really bad body pain, back aches, fever. This is also why I've had trouble sleeping all these weeks. And then the rash AND THEN to blisters. All on the right side of my torso. Very very painful and uncomfortable.

Thats all i've got to say right now about that

The sickness, the sorrow, no talks of tomorrow: The drugs that keep me alive

Coumadin is an anticoagulant (blood thinner). It reduces the formation of blood clots. It works by blocking the synthesis of certain clotting factors. Without these clotting factors, blood clots are unable to form. Coumadin may also be used for purposes other than those listed in this medication guide (like in poisons used to kill rodents). This medication can cause birth defects in an unborn baby. Carry an ID card or wear a medical alert bracelet stating that you are taking Coumadin, in case of emergency. Coumadin interacts with many other drugs, and these interactions can be dangerous, even fatal. Avoid sudden changes in your diet. Vitamin K decreases the effects of Coumadin. Large amounts of vitamin K are found in foods such as liver, broccoli, brussels sprouts, spinach, Swiss chard, coriander, collards, cabbage, and other green leafy vegetables. Do not change the amount of these foods in your diet without first talking to your doctor. Avoid eating cranberries, drinking cranberry juice, or taking cranberry herbal products. Avoid drinking alcohol, which can increase some of the side effects of Coumadin. Do not take this medicine if you have:

• a bleeding disorder such as hemophilia;

• a blood cell disorder such as anemia;

• a stomach ulcer or bleeding in the stomach;

• a history of aneurysm, blood clot, or bleeding in your brain; or

• an infection of your heart, fluid or swelling around your heart.

FDA pregnancy category X. Coumadin can cause miscarriage, stillbirth, birth defects, or fatal bleeding in an unborn baby. Do not use Coumadin if you are pregnant. Tell your doctor right away if you become pregnant during treatment. Use an effective form of birth control while you are using this medication.

Before taking Coumadin, tell your doctor if you have:

• kidney disease;
• liver disease;

• celiac sprue (an intestinal disorder);

• a recent injury, surgery, or medical emergency;

• high blood pressure;

• severe or uncontrolled diabetes;

• polycythemia vera;

• congestive heart failure;

• cancer;

• overactive thyroid;

• a seizure disorder for which you take an anticonvulsant such as phenytoin (Dilantin) or phenobarbital (Luminal); or

• a connective tissue disorder such as Marfan Syndrome, Sjogren syndrome, scleroderma, rheumatoid arthritis, or lupus.

Tramadol is an atypical opioid which is a centrally acting analgesic, used for treating moderate to severe pain. It is a synthetic agent, and appears to have actions on the μ-opioid receptor as well as the noradrenergic and serotonergic systems. The most commonly reported adverse drug reactions are nausea, vomiting, sweating and constipation. Drowsiness is reported, although it is less of an issue than for other opioids. Respiratory depression, a common side effect of most opioids, is not clinically significant in normal doses. By itself, it can decrease the seizure threshold. When combined with SSRIs, tricyclic antidepressants, or in patients with epilepsy, the seizure threshold is further decreased. Seizures have been reported in humans receiving excessive single oral doses (700 mg) or large intravenous doses (300 mg).

Hydroxychloroquine is used to prevent or treat malaria infections caused by mosquito bites. It does not work against certain types of malaria (chloroquine-resistant). The United States Center for Disease Control provides updated guidelines and travel recommendations for the prevention and treatment of malaria in different parts of the world. Discuss the most recent information with your doctor before traveling to areas where malaria occurs.

This medication is also used, usually with other medications, to treat certain auto-immune diseases (lupus, rheumatoid arthritis) when other medications have not worked or cannot be used. It belongs to a class of medications known as disease-modifying antirheumatic drugs (DMARDs). It can reduce skin problems in lupus and prevent swelling/pain in arthritis, though it is not known exactly how the drug works.

This medicine can cause nausea, stomach cramps, loss of appetite, diarrhea, dizziness, or headache may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly. This medication may infrequently cause serious (sometimes permanent) eye problems or muscle damage, especially if you take it for a long time. Seek immediate medical attention if any of these unlikely but very serious side effects occur: sensitivity to light, vision changes (e.g., blurred vision, seeing light flashes/streaks/halos, missing/blacked-out areas of vision), muscle weakness. A very serious allergic reaction is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction may include: rash, itching, swelling, dizziness, trouble breathing.


and SOME of the meds I've taken in the past (can't remember them all...there have been so damn many)

Prednisone is in a class of drugs called steroids. Prednisone prevents the release of substances in the body that cause inflammation. Prednisone is used to treat many different conditions such as allergic disorders, skin conditions, ulcerative colitis, arthritis, lupus, psoriasis, or breathing disorders. Prednisone may also be used for other purposes not listed in this medication guide. Your steroid medication needs may change if you have any unusual stress such as a serious illness, fever or infection, or if you have surgery or a medical emergency. Prednisone can weaken your immune system, making it easier for you to get an infection or worsening an infection you already have or have recently had.

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Call your doctor at once if you have any of these serious side effects:

• problems with your vision;

• swelling, rapid weight gain, feeling short of breath;

• severe depression, unusual thoughts or behavior, seizure (convulsions);

• bloody or tarry stools, coughing up blood;

• pancreatitis (severe pain in your upper stomach spreading to your back, nausea and vomiting, fast heart rate);

• low potassium (confusion, uneven heart rate, extreme thirst, increased urination, leg discomfort, muscle weakness or limp feeling); or

• dangerously high blood pressure (severe headache, blurred vision, buzzing in your ears, anxiety, confusion, chest pain, shortness of breath, uneven heartbeats, seizure).

• sleep problems (insomnia), mood changes;

• acne, dry skin, thinning skin, bruising or discoloration;

• slow wound healing;

• increased sweating;

• headache, dizziness, spinning sensation;

• nausea, stomach pain, bloating; or

• changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).

They forgot to mention weakening of bones, joints and tissue, which can cause neucrosis, which I have in my right hip. A permanent damage, a permanent limp when it's bad. They also didn't emphasis that it can make you so depressed that you'll attempt suicide, your mood swings are so erratic that it's hard to function, your eye sight and hearing will be greatly changed and that you eat until it hurts.

Plavix keeps the platelets in your blood from coagulating (clotting) to prevent unwanted blood clots that can occur with certain heart or blood vessel conditions. Plavix is used to prevent blood clots after a recent heart attack or stroke, and in people with certain disorders of the heart or blood vessels. You may also have bleeding on the inside of your body, such as in your stomach or intestines. Call your doctor at once if you have black or bloody stools, or if you cough up blood or vomit that looks like coffee grounds. These could be signs of bleeding in your digestive tract. Avoid drinking alcohol while taking Plavix. Alcohol may increase your risk of bleeding in your stomach or intestines. Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Stop using Plavix and call your doctor at once if you have any of these serious side effects:

• nosebleed or other bleeding that will not stop;

• black, bloody, or tarry stools;

• coughing up blood or vomit that looks like coffee grounds;

• chest pain or heavy feeling, pain spreading to the arm or shoulder, nausea, sweating, general ill feeling;

• sudden numbness or weakness, especially on one side of the body;

• sudden headache, confusion, problems with vision, speech, or balance; or

• pale skin, easy bruising or bleeding, weakness, fever, and urinating more or less than usual.

• stomach pain;

• runny or stuffy nose, cough, sore throat; or

• mild headache or dizziness.

Azathioprine (or Imuran) is used to inhibit the immune response that causes rejection of kidney transplants. Azathioprine is also used for the treatment of severe, active rheumatoid arthritis. It is considered a "second-line," or "slow- acting" drug and is usually reserved for rheumatoid arthritis patients who do not respond to other first-line or second-line medications. Azathioprine can cause an increase in cancer risk when used long-term. This particular risk increases in patients with a prior history of treatment with other powerful immunosuppressants, such as Cytoxan, Leukeran, and Alkeran. It also increases the risk of serious infections. Azathioprine can impair fertility by reducing sperm counts in males. Because azathioprine's toxicity increases when taken with the gout medication allopurinol (Zyloprim), its dose is reduced with simultaneous use. Severely low white blood counts can occur when taken with other drugs that can affect the bone marrow or with ACE-inhibitor class drugs used to treat elevated blood pressure, such as Accupril and Vasotec. The safety and effectiveness for use in children has not been established. Azathioprine is transferred to the fetus and is avoided in pregnancy. The most common serious side effects of azathioprine involve the blood elements and gastrointestinal system. Azathioprine can cause serious lowering of the white blood cell count, resulting in an increased risk of infections. This can reverse when the dose is reduced or temporarily discontinued. Azathioprine can cause nausea, vomiting, and loss of appetite, which can resolve when the dose is reduced or divided through the day. Azathioprine can also cause liver toxicity (in less than 1% of rheumatoid arthritis patients). All patients taking azathioprine require regular blood testing for blood counts and liver function tests for monitoring. Other side effects encountered less frequently include fatigue, hair loss, joint pains, and diarrhea.


Zocor is a cholesterol-lowering medication that blocks the production of cholesterol (a type of fat) in the body. Zocor reduces low-density lipoprotein (LDL) cholesterol and total cholesterol in the blood. Lowering your cholesterol can help prevent heart disease and hardening of the arteries, conditions that can lead to heart attack, stroke, and vascular disease. In rare cases, Zocor can cause a condition that results in the breakdown of skeletal muscle tissue. This condition can lead to kidney failure. Call your doctor at once if you have unexplained muscle pain or tenderness, muscle weakness, fever or flu symptoms, and dark colored urine. This medication can cause birth defects in an unborn baby. Do not use if you are pregnant.


So if I don't take the Coumadin, i'll most likely die from some kind of blood clot. I have half a spleen, have had several mini strokes, 2 heart attacks and a clot can end up anywhere.
Tramadol is supposed to help with the pain, but all it does it mellow me out.
Plaquenil is suppressing my immune system so that the lupus stops attacking my organs and my joints. It's pretty unsuccessful, but I take it anyway. Apparently on a cellular level, it's working, even if I'm still in pain every day, showing signs of bad flares and sick. Funny how that works.
And here I am, 24 and childbearing age and not only because of the medication, but also my lupus, probably won't ever get the chance.

I try not to be bitter about a lot of things. Folks flake out because they can't handle seeing me this way (and in the past when it was worse, folks were even faster to leave) or being around something so "fragile" and feeling "so powerless."
How do they think it makes ME feel to be left alone with this?
Over the past 7 years, I've tried so many things to alleviate this god damn curse of a disease. Before with the Lupus and just my heart, I could deal. It was what it was and I did what I had to do. It's a muscle disease thats also attack my organs. My body is attacking itself, treating ME like the disease. Fine. But then I find out I've had this blood clotting things all along as well and it's a whole other ball of responsibilities, more medication, more monitoring, more risk.

It's been a couple years now that I've been taking the blood thinner. The doctor told me I have to be on it for the rest of my life. I might as well get my tubes tied in that case. Some folks say maybe things will change, maybe things will get better. But I've been experiencing these 7 years and seeing it change for the worse.

I smile. I work. I hang out with my friends. I live the joys of life. I do what I love to do. I experience things. I try to live my life as a good person and do good things and help people every day. I do the best I can. And still for some reason I am being punished with these illnesses and I don't know why. I try to figure out what I did. Of course I'm not perfect, but do I deserve this? Does anyone?
Right now I am in so much pain. My joints, my hip, my back, my legs. Why? And I'm not supposed to feel lonely with this. I'm left alone to deal and I'm not supposed to feel lonely? Either I'm treated like a damn fragile glass doll, completely discredited as if I'm making it all up, told that I'm not trying hard enough to get better OR left alone completely to figure it out on my own.

None of it is fair and none of it makes sense.
I keep thinking about going to a healer. Funny how I can heal others, but not myself. How I can sooth the sickness, touch the grief, bring the darkness out of anyone else and never for myself?

Maybe it's time to visit someone who can actually help me.

No matter how much information I try to show people, they'll never understand. And they never will. And they wonder why I just tell them to hell with it and keep alone. It's not worth it in the end. I'm all I have in the end. You just get use to it after a while and then you grow to only want to live that way.

Watch what you eat, get enough sleep, no drinking, don't mix the wrong drugs, get enough vit k, no sun, don't eat certain fruits, don't eat certain veggies, keep away from hard exercise, don't stay out late, don't get up too early, don't run, don't stand too long, no hot tub, no sauna, no beach, no children, no spouse, no friends, no life, no love, no nothing.

This time last year: Part 1

This time last year, it had been 6 days since my brother had a motorcycle accident that left him with several skull fractures, bleeding in the brain, a broken wrist and temporary paralysis to the right side of his body. This time last year, I sat holding my breath, being the strong one for everyone while he slept, fighting for his life.

This time last year, I was having mini-strokes and didn't know it. Felt as if my world was going to fall apart because my little brother almost left us. Because I almost left them.
So much can happen in a year.

So fast the time goes, so fast our lives get closer and closer to its end.
So it goes that time slips through our hands, like grains of sand and dirt. Easily sliding through the creases of our skin, through the parted fingers of our hands.
Time, in fact, is of the essence, because time is what we are running out of.

Pompeii: The great fallen city Part 1

Pompeii is a ruined and partially buried Roman city near modern Naples in the Italian region of Campania, in the territory of the comune of Pompei.
Along with Herculaneum, its sister city, Pompeii was destroyed, and completely buried, during a catastrophic eruption of the volcano Mount Vesuvius spanning two days on 24 August 79 AD.

The volcano collapsed higher roof-lines and buried Pompeii under many meters of ash and pumice, and it was lost for nearly 1700 years before its accidental rediscovery in 1748. Since then, its excavation has provided an extraordinarily detailed insight into the life of a city at the height of the Roman Empire.

The archaeological digs at the site extend to the street level of the 79 AD volcanic event; deeper digs in older parts of Pompeii and core samples of nearby drillings have exposed layers of jumbled sediment that suggest that the city had suffered from the volcano and other seismic events before then. Three sheets of sediment have been found on top of the lava bedrock that lies below the city and, mixed in with the sediment, archaeologists have found bits of animal bone, pottery shards and plants. Using carbon dating, the oldest layer has been dated to the 8th-6th centuries BC, about the time that the city was founded. The other two layers are separated from the other layers by well-developed soil layers or Roman pavement and were laid in the 4th century BC and 2nd century BC. The theory behind the layers of jumbled sediment is large landslides, perhaps triggered by extended rainfall.

The town was founded around the 7th-6th century BC by the Osci or Oscans, a people of central Italy, on what was an important crossroad between Cumae, Nola and Stabiae. It had already been used as a safe port by Greek and Phoenician sailors. According to Strabo, Pompeii was also captured by the Etruscans, and in fact recent excavations have shown the presence of Etruscan inscriptions and a 6th century necropolis. Pompeii was captured a first time by the Greek colony of Cumae, allied with Syracuse, between 525 and 474 BC.

In the 5th century BC, the Samnites conquered it (and all the other towns of Campania); the new rulers imposed their architecture and enlarged the town. After the Samnite Wars (4th century), Pompeii was forced to accept the status of socium of Rome, maintaining however linguistic and administrative autonomy. In the 4th century BC it was fortified. Pompeii remained faithful to Rome during the Second Punic War.

Pompeii took part in the war that the towns of Campania initiated against Rome, but in 89 BC it was besieged by Sulla. Although the troops of the Social League, headed by Lucius Cluentius, helped in resisting the Romans, in 80 BC Pompeii was forced to surrender after the conquest of Nola. It became a Roman colony with the name of Colonia Cornelia Veneria Pompeianorum. The town became an important passage for goods that arrived by sea and had to be sent toward Rome or Southern Italy along the nearby Appian Way. Agriculture, oil and wine production were also important.

It was fed with water by a spur from Aqua Augusta (Naples) built circa 20 BC by Agrippa, the main line supplying several other large towns, and finally the naval base at Misenum. The castellum in Pompeii is well preserved, and includes many interesting details of the distribution network and its controls.

As told by wikipedia and then some. When it's your time to go, it's your time.

Can Faith Heal?

Can faith heal? Can love? Can community?

Just throwing the questions out there. Of course I have deeper thoughts, but at this point my wounds are too fresh (even after all this time) to dive in to the subject.

So think on it while I collect my thoughts on it.

Fear is a enemy you can't ignore because it's part of you...

Accept it and it makes you stronger
Run from it, and, well....

Might as well be accepting of the things we are fearful of. Where are they going? Are they going to leave us? Are they not going to exist? Should we simply hate what we fear?

Hating what we fear, running from what we fear, not accepting it is a cop out.

Might as well just deal with it.

Fear is part of us all.

We just need to face.

So go out and face your fears. After all, whatever doesn't kill you makes you stronger.

Love conquers all

Does love drain us of our strength? Does love really exist? Or is it bread out of our own selfish need? Why do we wonder? Does he love me? Do I love her? Does it matter?

Interesting Drug

I find it interesting how some people can gain your trust, your love, your loyalty, your commitment and then turn their back on you once you've been won over. Once you've been convinced. Once you've given in to their request to know what your insides feel like against their brain.

I'm realizing the hard way, the older I get, that it may not be worth it to allow that to happen. But is that fair to everyone else who comes into my life after such betrayal? They may be trustworthy. They may be good inside and not malicious or manipulative or so full of vanity. They might be. Then again, everyone seems perfect in the beginning. Too good to be true. And then they show you what's really inside. We all, everyone, has that. Just to different degrees and just shown in different ways. And just because someone isn't perfect, doesn't mean they have maliciousness inside either. That's what being human is.... imperfection. 

I just feel once again like a stupid fool of a girl. Yet, I'm much older. A woman. Shouldn't be so foolish. So stupid. So believing. But love. Love will make you do these things. Love is, in the wrong hands, the root of all evil. If not for one person "loving" another, many issues wouldn't even exist.... Then again, those kinds of "love" aren't real love... aren't the actual meaning of love... Aren't what love is supposed to be.

SO Love isn't evil. It's many faces are. Its obsession, its lies, its greed, its jealousy.... those are the parts, those are the fake faces, the false prophets of love... 

And those are what got me. Those and much more.... A pretty face, sweet words, got me....

And I fell for it. Stupid girl moves aren't supposed to be for grown women who should know better. Ha! Key word. Should! I guess we all can be foolish. All of us. And give in to something that feels good, but isn't necessarily good for us. Especially when we're hard to get. And that pretty face with the sweet words (which you would have NEVER in the past listened to) sounds so tempting and just one taste, one touch will never sate your appetite; never. And they'll let you keep coming back and back and back again. Until you've been conquered. Until you, the hard to get, has been gotten and there is no more left to get. And you are left defeated and used and alone.

I've learned my lesson. Best believe the stupid foolish girl has been washed away with tears of past. No more of that. Grown women know better. Yes, yes, we do.

P-town A.K.A. Palestine

Okay, so I was going to go to sleep, but then I decided to check out the flights again for my trip in October. I leave October 2nd and come back October 28th.
Now all I have to do is figure out how to pay for most of my ticket. Hmmmm.
It's not an easy feat. It's over $1,000. Well, as long as folks are still contributing, it won't be over a thousand for me... it'll probably be closer to $700-$800... much better, but still a lot
But it's a must.

I must go now. It's calling me. It's been calling me for 24 YEARS. It's something I have to do. For my sanity. For my growth. For my blood and my heart and my dignity and my family. To ease the ache in my heart to see where my father comes from and learn all the things I didn't get to learn all this time. I must go. Hopefully enough people will send me contributions and it'll help with the difference. I've gotten some money already and it's been such a blessing. It made me cry every time I got a check and a note in the mail.

I talked to an ex about it the other day. Of course she was unsympathetic. Doesn't understand why I didn't just wait and save the money myself. Why I have to "beg" people for my trip. Why I'm not going back to school with that money.

She doesn't understand why it's important for me. And she doesn't understand why I asked my community to help me either. AND she doesn't understand why this is more important than going back to an institution that hasn't been understanding of my identity or the realities of my life and my world.

Of course I could have waited another 2, 3, 5 years until I may have had enough money. Maybe. And what, am I supposed to ignore the emergencies that happen. Ignore the need of my family here in NYC. Ignore my health needs. No. Things cost money. Things are always going to happen. And if I waited any longer and didn't ask for help... I know... I fucking know I wouldn't see Palestine for a very very long time.

It's easy for her (and many other well-offs) to say that when they don't struggle for money or food on the table. Its never been a problem for her because her family has it.

I don't have the luxury. There is no help for me that way. So I reached out to folks who I know would understand and support. And I got a response that brought tears of joy to my eyes.



I also have to work really hard at getting extra money for when I get back for rent and living and such since I won't be working in October while I'm there. Gotta get enough photo gigs, enough teaching gigs, enough something in the next 7 weeks to make up for October's lack of money.

I'll figure it out. I've always been resourceful in one way or another.

Whether it's massages and/or bartending, I'll make it. I'll survive.

Ok... third time's a charm.

Off to bed... er, uh... i'm already in bed... off to sleep :)... i go


Positive money making vibes coming my way......

See, what had happened was.....

I didn't even really try to go to sleep. I mean, I took some stuff to help, BUT THEN I got caught up in editing pictures and searching the internet for some manifesting charts AND working on my website. Sooooo yeah.. it's almost 3am and I found another reason to stay up.

At least it wasn't facebook :)

In other news, today I went to a poetry reading and it felt goooood. It was liberating to get up and do some old pieces. I did I Remember Family Gatherings and Ancestry of Song. I got to see some folks that I haven't seen in years and I got to sing. I was really happy about it. I felt like this thing was built up inside of me and needed to get out and I let it get out in such a powerful way. I need to do that more often. I think that if I started going to poetry readings again, at least a few times a month, that not only would it help me release some pent up energy, BUT it would also unblock some of the things that are keeping me from writing constantly, like I use to. Even if it's a journal entry, it's something....

Then again, THIS is what that is, sort of. This has been my into into writing consistently and getting the juices flowing again, like they use to, several times a day, almost every day. It's the only way to get some of my longer writing projects done. It's especially needed if I'm actually going to get my book(s) published and get them out to the masses. It's gonna take dedication to my writing and in order to do that, I'm going to have to open up and in order to do THAT, this blocked-up-ness needs to be out of the way.

So more poetry readings all around. More blogging. And more writing.

Sunday writing circle anyone? I've been wanting to put one together for a very long time. Maybe it's time to just do it, huh?

Let's say every Sunday, 2-4:30pm, in Brooklyn Heights at Connecticut Muffin. Each week someone new facilitates and we all share, help, do writing activities, etc. I'll even facilitate the first few to get the ball rolling. Maybe 8-10 people. Maybe women of color. Maybe.
Sounds like a plan :)

Let's see if I can make it a reality...

Ok. I'm going to try to sleep for real now.



It's 3am. Do you know where your children are?

Watchmen Trailer (I'm such a comic geek...oh well...YAY!)

Another Lupus awareness video

Lupus Video... maybe this will explain some things to folks....who don't understand some of the things I've gone through and continue to go through

Sleeplessness....and then some.

I remember reading through my old blog and I nearly as contemplative out loud as I am now. It's refreshing. This is like my online journal I kept through my late teens. So very candid. So very honest.
I guess at this point what do I have to lose. Why be vague?
And why always be serious? Hmm.

Sleeplessness.
I thought (and talked) about the many reasons WHY I "can't" sleep these days. Is it thinking about Dave? Is it thinking about work? Is it thinking about health? Are my hormones out of wack? Am I lonely? Am I over-caffeinated? Am I too wound up?

Most likely all of the above and then some. Let's see if tonight will be different.
Let's see if I can get something over 5 hours of sleep.
It's a troublesome battle, this lack of rest. Because 10 years ago, I could stay up for 72 hours straight and not be too bothered by it until much later... now, it takes me an hour after I'm up to feel completely fatigued. Of course I wasn't fully afflicted by my lupus fatigue until after those early teenage sleepless nights, but still. It's getting to me. Like a twilight episode where something freaky in black and white is going to happen and send me into limbo where there's a spinning bullseye and a woman with a pig nose.

It's only a matter of time before I snap. So what? Get some calmz. Get some sex. Get some clarity on money. Get some natural healing. Start meditating again.

All of the above and then some, i guess.

Aint it always so.

All of the above and then some.

Yep...........yep.

Father's Day

Yesterday my father would have turned 50.
Unfortunately he never got to live past 40.
A heart attack at 40. I guess it was befitting for me to have had 2 at 17 then, huh?

I think about my dad almost every day. There isn't a moment that goes by that I don't wonder what life would have been like these years, if my dad had lived.

In October, I get to visit my fathers family, my family, in Palestine. I'll see where he grew up, where he was born, where he became a man. His older sisters will tell me what I'll never know on my own.

In October, I may be able to fill the hole in my heart where the knowledge of that part of my family is. See my cousins. See my aunts and uncles. See this part of my heritage that feels so close, but so far.

He's alive. He's in my heart, in my thoughts, in my memories every day.

I miss you daddy. You're with me always.

Honesty and it's policy part 1

We lie in little ways every single day. We lie to ourselves about little things. We lie to the people we love to spare their feelings or because we're not brave enough to tell the whole truth. We lie to the people we work with. We lie even in our body language.

Honesty. Is it really the best policy?

Or are we fooling ourselves. Can you honestly tell your boss to go fuck themselves when they've said something distasteful or mean? Can you really tell your gf that she looks fat to you? Can you tell your spouse that it's ok to cheat on them because you still love them?

I try to in everything I do to be honest, but sometimes the little white lie is easier to accept and deal with and say than the truth. It's a sad truth. That's messed up.

Telling the people that we love THAT we love them. Going out on a limb for a friend when you don't necessarily have to talk. Telling someone who has power over you when they are wrong.

In every day, in every way

I hunger for their lips on mine. I simple caress of skin across skin. Of hands across legs. Of teeth and tongue across neck. I'm frustrated with the need and desire to be close, to stand near, to smell the sweat and scent deep under their clothes. I can't stand to look them in the eyes. I can't.

I am only so strong as my human need most of the time. And my need comes from more than the need of physical touch. It comes from love. Comes from deep desire to be with you. And only you. And you want to share yourself with everyone else because you're scared. You feel your running out of time. What the hell time do you need to be with others when you love me? Why be with others when you love me? Why share your so called limited time with others, when you can share it with me. Why?

I just need a bit of clarity in this sometimes. I need to know why you keep me around. Why you hug me, kiss me, touch me and then go back to talking to others as if I never meant anything to you. They probably don't even know I exist. But I know they exist. I know. I've always known.

And yet. And yet. Stupidly, I love you. Still. I want you. Still.

How sad that is for me. How sad. And how very lonely.

I suppose I should really work on moving on. Really, truly moving on. Because it's not me that you really want. Or anyone else. You want yourself. You want to waste your time looking for something that isn't going to happen. You're not going to change. So why keep my hopes up. You are not going to change. You are not. You will not.

So I might as well let you look by yourself and move on. Really, truly move on.

Because my heart can't take anymore. I can't take anymore. I won't.

And yet, I still wait for you to surprise me.

No matter how old I get, I still feel like a stupid stupid girl in this situation.

Great.

The Importance of being true

Most of us, on a regular basis, force ourselves to do things that we don't really want to do. Most of us, on a regular basis, do things out of obligation, rather than out of a desire to do it. Paying your taxes, taking out the garbage, saying sorry, dealing with the boss, staying at a job that makes you unhappy but pays the bills.... those are things we have to do, are obligated to do, but don't necessarily want to do. 

Why do we put up with it? Why do we torture ourselves? Why aren't we just true to ourselves and actually break free from doing the things we don't want to do? Of course there are things we don't want to do that we must. Like taking out the garbage. But why stay at a job that makes you miserable? If you were qualified enough to get a job at that place to begin with, aren't you qualified enough to get a job else where doing the same or similar OR even some kind of different work? 

Why do we let these things have so much power over us? To the point of depression. To the point of anger. To the point of breaking. Why do we settle and let ourselves suffer through it?

What happened to the importance of being true to ourselves? To being honest with our wants, needs and desires? Why is it so much easier for some of us to do the things we don't want to do, rather than letting ourselves be happy and do what makes us happy? 

So here is to doing what the hell makes me happy and not doing anything that makes me miserable. I've been on this path for months now. Giving up, little by little, many of the things that make me unhappy and mostly doing the things that bring me joy. I don't have time to waste. I don't have years and years and years to waste on unhappiness. 

Then again, who does? 

Do you?

To give.To Give. to give.

Why do we ultimately give? Is it out of guilt? Is it out of necessity? Is it because we have no other choice? Is it because of the kindness in our heart?
Why do we give? At what cost do we give? When must we stop giving? When is it enough?

I think about this as I give to others. I do it mostly out of the kindness of my heart. Simply because I want to give and I can't stand to see others with out; can't stand to see others struggle when I have something to offer. In the same breath, I do it for some because I must, because I am obligated by blood and responsibility.

I've stopped giving until there is nothing left. I don't do that anymore. I use to though. I use to give until I was completely empty and without for myself and I'd continue to give... a serial helper is what I was called by my ex at the time. She said I'd help and help and help and leave myself raw and naked and without. She was right. I'm glad I've changed.

It's still a process though.

I am still guilty of giving to others and taking away from myself, but not to the degree of what it use to be. I still have for myself. I don't go without, I am not left in debt or hungry or without a penny to my name. I don't do that anymore. But I still give. I give without the need to receive. I still sometimes feel selfish or unworthy when I receive, even if I've earned it. The feeling sometimes creeps up on me like a shadow as the light shifts in a room. It silently moves through me and glides in shivering lines across my skin and into my heart. Slithering along inside my blood until it reaches my brain, trying to convince me, trying to coax me into truly believing.

I am human after all. Susceptible to doubt, to guilt, to feelings of unworthiness, to feelings of shame. I know that no matter how much good I do, how much I give, I am still human, still have darkness inside of me. Maybe sometimes this is why I still give. Because I know how dark I am inside and I must repent. Maybe. Maybe.

Or maybe I think I am bad inside because this is what I was lead to believe early on. Unworthy. Shameful. Bad. And so I must repent because there is more amount of prayer that will help my sins. Maybe.

I shouldn't feel guilty of my success. I shouldn't feel shame for receiving. I shouldn't feel unworthy of love or friendship. I shouldn't. Intellectually, I know I shouldn't. But I do. And I suppose it has something to do with my childhood.

Should I then continue to confront it in therapy and with those around me who I've slowly let in? Or should I accept the darkness inside and stay in solitude. Doing what I must to survive and going about my business. It's easy to give in to it. Easy to let the dark have me. It's much harder to fight. Much harder to trust. Much harder to let others in.
Then again, I've always been a willing sacrifice. I am there for those who need me. I am relentlessly loyal. I'm a fierce friend. I willingly give, without breaking a sweat, because it is what I do. I like to give and I'd willingly sacrifice myself for others... I guess to a point at this stage in my life.

I don't know. Stream of thought and consciousness. I feel sometimes as if I have all the time in the world. To ponder like Plato, to question like Descartes, to dream and write like Octavia Butler. All the time I need. At the same time, in the same breath, I can hear the clock tick. A melodic tap of a finger across the wood of time, reminding me that every second counts and that I just lost several thinking instead of doing. But what I am to do? I have no time to even consider more, let alone to act. I keep thinking is the time near? Is the time now? Is the end almost upon me? Or the rest of the world? Or am I listening to the wrong clock?

What am I to do? I've felt for the past almost 7 or 8 years that I've been on borrowed time. As if I was supposed to die in that hospital bed in September 2001 and that my recovering was some kind of accident. That them finding out what was wrong with me was some kind of fluke. Or that that isn't it at all and I'm still ill because of something else. I don't know what goes through my mind sometimes. Maybe it's because of my biology. My DNA is predestined to wonder and ponder and question and ask and suffer and..... and what? And create and love and be.

I suppose it is, huh?

To give. To Give. to give.

Is it a bad thing to be running on the Instinct of Self Preservation?

Is it a bad thing to be running on the instinct of self preservation?
Is it?

What is more important than to survive? We need things (humans at least) to survive, to be alive. As babies and children, we need touch, need love, need nourishment, need protection, need compassion. That assists in our beginnings of survival. Our instincts of what is bad and good on the very basic level are still building up, still assessing what it means to be in this new body, in this new world, with these people who we are completely and utterly reliant on.

As we get older, we need reassurance, we need affection, we still need love and compassion, we need to be able to trust. Those are necessarily needed to survive on the BASIC level, but it's needed to survive for our sanity's sake. If you love no one, trust no one, are assured and receive no affection from anyone, what kind of monster will you become?

It still brings me back to the question of, is it a bad thing to be running on the instinct of self preservation?

Self defense of any kind is a natural reaction. If something is coming towards your face, you hold you hands up to block it. It some liquid splashes towards your eyes, you close them. If something brings you pain, you pull away, you struggle. Against the tied, against the pull, against the current... we struggle to stay alive.

At what cost will you survive? What would you do to stay alive? To preserve your own existence?