Tuesday, May 24, 2011

Hair of the Wolf

It is an important day to me, since I have Lupus.
Bottom line LUPUS SUCKS.  Here is a list of symptoms:
If you have lupus (systemic lupus erythematosus, or SLE), you may be extremely tired, have skin rashes, or have joint pain. If the disease is more serious, you may have problems with your kidneys, heart, lungs, blood, or nervous system.
Lupus symptoms depend on what body organs are affected and how seriously they are affected.
Fatigue : Nearly all people with lupus have mild to extreme fatigue. Even mild cases of lupus cause an inability to engage in daily activities and exercise. Increased fatigue is a classic sign that a symptom flare is about to occur.

Joint and muscle pain: Most people with lupus have joint pain (arthritis) at some time. About 70% of people with lupus report that joint and muscle pain was their first sign of the disease. Joints may be red and warm, and may swell. Morning stiffness may also be felt. Lupus arthritis often occurs on both sides of the body at the same time, particularly in the wrists, small joints of the hands, elbows, knees, and ankles.

Skin problems: Most people with lupus develop skin rashes. These rashes are often an important clue to the diagnosis. In addition to the butterfly rash over the cheeks and bridge of the nose, other common skin symptoms include skin sores or flaky red spots on the arms, hands, face, neck, or back; mouth or lip sores; and a scaly, red or purple raised rash on the face, neck, scalp, ears, arms, and chest.

Sensitivity to light: Exposure to ultraviolet light (such as sunlight or tanning parlors) typically worsens the skin rash and can trigger lupus flares. Sensitivity to light affects many of those with lupus, with fair-skinned people with lupus tending to be more sensitive.

Nervous system symptoms: The majority of people with lupus develop nervous system problems, most commonly headaches, depression, or anxiety. Memory loss is less common.

Heart problems: People with lupus may develop inflammation of the heart sac (pericarditis), which may cause severe, sudden pain in the center of the left side of the chest that may spread to the neck, back, shoulders, or arms.

Mental health problems: People with lupus may develop problems such as anxiety and depression. Such problems can be caused by lupus, the medications used to treat it, or the stress of coping with chronic illness.

Fever: Most people with lupus will sometimes have a low-grade fever related to the disease. Fever is sometimes a first sign of the disease.

Changes in weight: Many people with lupus lose weight when their disease is active (flaring).

Hair loss : People with lupus may experience periods of hair loss, either in patches or spread evenly over the head. This hair loss is usually not permanent.

Swollen glands : Many people with lupus eventually develop swollen lymph glands during a flare.

Raynaud's phenomenon: Some people with lupus have this condition. It affects the small vessels that supply blood to the skin and the soft tissues under the skin of the fingers and toes, causing them to turn white and/or blue or red. The skin affected will feel numb, tingly, and cold to the touch.

Inflammation of blood vessels in the skin (cutaneous vasculitis): Inflammation or bleeding from the blood vessels can lead to small or large blue spots or small reddish spots on the skin or nail beds.

Swelling of the hands and feet: Some people with lupus have kidney problems, which can prevent extra fluids from being removed from the body tissues. As fluid collects, the hands and feet may swell.

Anemia : Anemia is a decrease in the amount of the oxygen-carrying substance (hemoglobin) found in red blood cells. Many people with an ongoing disease such as lupus develop anemia because they don't have enough red blood cells.

I have Lupus. But I won't let it have me.
I am currently in an unexplainable remission. Lupus doesn't generally go into remission. There is no cure for this condition, but the symptoms can be treated.
Lupus is often misunderstood. It is a difficult condition to "see" on a person and people are often misjudged as being hypochondriacs, or lazy. Lupus sufferers are in constant, difficult pain. Often this pain cannot be controlled by meds. It is a pain I have never felt before. Deep muscle and bone aches that burn and twist. Sometimes your entire lymphatic system will "catch fire" and you feel like the nodes are going to burn through your skin. Then the neuropathy  kicks in and you walk on feet and use hands that feel "shocked" and send searing pain through you with each step, each grasp.  Your hair falls out in handfuls. You loose your self confidence, your desire to be social. You become depressed. The natural anxiety that accompanies Lupus, joined with this social depression and helplessness can be utterly overwhelming. Lupus is an entire body disease. It is evil and scary, but it can be overcome. It takes love, commitment and support from family, friends, co-workers and communities. But most of all, we desperately need a cure.

Thursday, May 19, 2011


    Last night he rang. The Bad Idea.
In my sleep fog I answered and heard the old familiar slurred voice.
My heart jumped. Lurched to the pit of my stomach.
    I eased into guidance mode.
Gently talk the jumper down from the ledge mode.
Talk the drunk to bed mode.
   I wasn't getting through this time.
A cacophony of crashes.
Glass, wood, flesh. Silence.
   So I rose and dressed and went.
Over to where I swore I would never go again
in this late night haste of rescue.
  "Don't call me like that".
I found his home open to the world and lit bright.
I found him prone on the kitchen floor-out.
I found him.
 Gently, put him to bed, undressed, covered,
Gently put the house to rights, lights out, locked up.
Gently kiss his head good night-brush away his
intoxicated advances.
And walk away.
Today his is hurting.
Wants none of me.
Wants none of life.
Wants nothing.
I will again be his guardian Angel
when the phone blows up.
Because I can't tell him no.