...that is code that the Lupus is back full force. Almost four years of remission. Minor symptoms if any and BAM. HURRICANE FORCE WINDS of a SLAM worth of a FLARE.
Totally broadsided. It started with the fatigue. Then the dizziness. I knew the anemia was back.
Then the pain. So much pain. Joints, muscles, even my skin. Nothing helped. Nothing I'd tried before worked. So the depression joined in. The only thing I wanted to do was sleep. And sometimes, the pain wouldn't even let me do that.
Right now I'm sitting in bed with the laptop on my knees, leaning against pillows piled against the headboard. My spine feels like it is made of a rusty goose neck lamp spine ...electric, searing, hot pain shoots up and down my spine, and no matter how I shift, it will still be there. My elbows hurt. My neck is throbbing and sending gut wrenching pain into my left temple and behind my left ear. I'd like to throw up.
I could take a handful of pills to try to kill the pain, but it has a 45% chance of working. What has a better chance of working is my mind. Putting my mind into a different place. Focusing myself away from the pain and discomfort. Its healthier, safer and I only fall back on the meds when I'm too weary to over think the pain or it overcomes my ability to ignore it.
I am so very grateful for my years of remission. I just don't remember things feeling this tough to deal with before though. Maybe its because I'm older. Or maybe its because it really is tougher.
I'm writing this down because 1) a sweet friend asked me to and 2) I want people to know what Lupus feels like. You can't really see it. Or fybromyalsia. (I have both). But they are terrible, debilitating illnesses that take a lot of effort to meet everyday with, and not give into.
I have Lupus, it does not have me....no matter how much it feels I am in the Jaws of the Wolf, I am in control of my life and what I let it do to me.
Showing posts with label Health. Show all posts
Showing posts with label Health. Show all posts
Monday, March 4, 2013
Tuesday, May 24, 2011
Hair of the Wolf
Today is WORLD LUPUS DAY.
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.
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.
Friday, July 10, 2009
Dodging Bullets
So, lately I've been dealing with some health issues. Today was the first of a few tests to narrow the field at to what the primary, underlying problem is. Today was big bullet #1 day, and I totally dodged it! WHEW! and can I say WHEW! again.
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