Monday, July 26, 2010

You are everything...

This song is powerful and moving.

by Lifehouse

Find Me Here
Speak To Me
I want to feel you
I need to hear you
You are the light
That's leading me
To the place where I find peace again.

You are the strength, that keeps me walking.
You are the hope, that keeps me trusting.
You are the light to my soul.
You are my're everything.

How can I stand here with you and not be moved by you?
Would you tell me how could it be any better than this?

You calm the storms, and you give me rest.
You hold me in your hands, you won't let me fall.
You steal my heart, and you take my breath away.
Would you take me in? Take me deeper now?

How can I stand here with you and not be moved by you?
Would you tell me how could it be any better than this?
And how can I stand here with you and not be moved by you?
Would you tell me how could it be any better than this?

Cause you're all I want, You're all I need
You're everything,everything
You're all I want your all I need
You're everything, everything.
You're all I want you're all I need.
You're everything, everything
You're all I want you're all I need, you're everything, everything.

And How can I stand here with you and not be moved by you?
Would you tell me how could it be any better than this? 
How can I stand here with you and not be moved by you?
Would you tell me how could it be any better than this?

How can I stand here with you and not be moved by you?
Would you tell me how could it be any better than this?

Would you tell me how could it be any better than this?

Friday, July 23, 2010

When the plumbing fails....

Kidney involvement is considered one of the most disabling and potentially life threatening of the lupus complications.  Your kidneys are part of your renal system.  Your renal system also includes: two ureters, the bladder, and the urethra. As the primary organs of the renal system, your kidneys are responsible for:

  • maintaining the correct amount and type of body fluids
  • getting rid of waste products and toxic substances
  • regulating the hormones (chemical messengers) that help control blood pressure and blood volume

When inflammation occurs in the “nephrons” (or in non-doctor terms… the structures within the kidneys that filter the blood), is called glomerulonephritis or lupus nephritis.   Lupus nephritis is the term used when lupus triggers inflammation in your kidneys…rendering them incapable of properly removing waste from your blood and/or control the amount of fluids within your body. The risk is that abnormal levels of waste will build up in the blood and lead to edema (swelling).  If it is left untreated, lupus nephritis can lead to scarring and permanent damage to the kidneys and possibly end-stage renal disease (ESRD) (or in non-doctor terms…kidney failure). People with ESRD need regular filtering of their body’s waste done through dialysis or receive a kidney transplant so that at least one kidney is functioning properly.

It is important to note, that not all kidney problems in people with lupus are due to lupus nephritis.  Some other things affecting the kidneys and urinary tract.

  • Infections of the urinary tract, causing frequent urination or burning when urinating, are quite common.
  • Fluid retention or even loss of kidney function can be a side effect of non-steroidal anti-inflammatory drugs (NSAIDs) and medications such as aspirin.
  • Interstitial nephritis, which is inflammation of the connective tissue inside the glomerulus, can be a side effect of anti-inflammatory medications or antibiotics.
  • Thrombosis and vasculitis, two blood-related lupus symptoms, can damage the kidneys and may even cause kidney failure.
  • Lupus cystitis, which is inflammation of the lining of the bladder, may cause frequent urination and is associated with abdominal discomfort, including vomiting and weight loss.

Lupus nephritis most often develops within the first five years after the initial onset of lupus symptoms.  Typically, people between the ages of 20 and 40 are affected. It is estimated that as many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require medical evaluation and treatment.   Unfortunately, there can be very few symptoms of active kidney disease which can result in significant damage to your kidneys before you are even diagnosed with lupus.  (Sudden leg swelling and high blood pressure were my first symptoms.  It took them about 4 weeks before we started checking my kidneys.  My mom has cardiovascular disease so it was lots of heart testing.  Thankfully, my heart is unscathed.  No signs of cardiovascular issues.  The “plumbing” there is perfect. J )

In the early stages of lupus nephritis, there are very few signs that anything is wrong. Often the first symptoms of lupus nephritis are weight gain and puffiness in your feet, ankles, legs, hands, and/or eyelids. This swelling often becomes worse throughout the day. Your urine may be foamy or frothy, or have a red color. Often the first signs of lupus nephritis show up in clinical laboratory tests on the urine. That is why testing your urine is so important.  (Pitting edema is not fun to have.  I have worn out many pairs of shoes because my feet went from size 8 to elephant size in a matter of hours…seriously…nearly tripling in size with swelling all the way past my knees.  My blood pressure would shoot up from 110/60 to 160/100 or higher.  That high causes headaches…and makes vasculitic headaches MUCH worse.)

Typically, nephrologists (kidney specialist) will use the following tests to diagnose lupus nephritis:  urinalysis -- usually over a 24-hour period; blood tests; and often, a kidney biopsy.  Because your body’s waste matter is processed by your kidneys, testing a sample of your urine can show any problems with the way your kidneys are functioning. The most common tests look for cell casts (fragments of cells normally found in the blood, or fragments of the tubules of the kidneys) and proteinuria (protein being spilled into your body because your kidneys are not filtering the waste properly).  (This is also something that diabetics watch out for as it could be a sign of ketoacidocis.  My dad was diabetic, and this was an issue that told us when his kidneys were being injured by his diabetes.)

Certain blood tests can provide information about kidney damage and how well your body is filtering waste. The creatinine blood test is usually ordered along with a blood urea nitrogen (BUN) test to assess kidney function. A combination of blood and urine creatinine levels may be used to calculate a creatinine clearance. This measures how effectively your kidneys are filtering small molecules like creatinine out of your blood. Serum creatinine measurements (along with your age, weight, and gender) are used to calculate the estimated glomerular filtration rate (EGFR), which is used as a screening test for evidence of kidney damage.

A kidney biopsy is done in a hospital. While you lie on your stomach your nephrologist will insert a very thin, long needle through the skin of your back and remove a tiny piece of tissue from one of your kidneys. The tissue will be examined under a microscope to determine how much inflammation or scarring is present.  (This procedure sucks.  It is uncomfortable and you will have blood in your urine.  You have to take it easy for at least 24 hours after the procedure.  No lifting for like a week…or you could cause bleeding issues. Don’t ask how I know.  >.< )

Fixing the plumbing…

Even though lupus nephritis is among the more serious complications of lupus, there are effective treatments. Prednisone and other corticosteroids are generally prescribed to stop the inflammation. Immunosuppressive drugs may also be used (with or in place of steroid treatments), such as cyclophosphamide (Cytoxan®), azathioprine (Imuran®), cyclosporin A, and mycophenolate mofetil (CellCept®). Medications developed for other illnesses are also being studied as treatments for lupus nephritis, including rituximab (Rituxan®), and eculizuimab (Soliris™).  (I am currently taking prednisone.  I just had a round of IV solumedrol …which is 1 gram of prednisone…my daily dose is 60mg…the massive dose was to counteract an episode.  My creatinine is still too elevated…1.4 is the highest normal level and I am at 2.0 right now.  The other labs are still in the safe zones but this one is still being difficult.  I am waiting to be put back on immunosuppressives and/or the chemotherapy.  It’s been many weeks since the shingles…apparently the virus antibodies are still circulating in my bloodstream as well which means that if they suppress me now the shingles will activate again.  So…we wait…the antibodies have to disappear before they put me back on the meds I need to keep the lupus in check.)

Tuesday, July 13, 2010

No Sailing in these Vessels...

Vasculitis is inflammation which occurs in the blood vessels. Inflammation occurs as tissue is damaged by mostly white blood cells entering the tissues. White blood cells circulate and serve as the main defense against infections. Normally, white blood cells destroy bacteria, fungi and viruses. However, in people with autoimmune conditions, they damage normal tissue when they invade it.

Vasculitis can affect:  very small blood vessels (capillaries), medium-size blood vessels (arterioles or venules), or large blood vessels (arteries or veins)

How Does Vasculitis Damage The Body?

Several things can happen to an inflamed blood vessel.

v  For a small vessel, it may break and produce tiny areas of bleeding in the tissue…which can appear as small red or purple dots on the skin.
v  For a larger vessel, it may swell and produce a lump or nodule…which may be felt if the blood vessel is close to the surface of the skin.
v  If there is narrowing of the blood vessel, then blood flow is reduced.  Occasionally, there may be a total blockage caused by a blood clot which forms at the site of inflammation.
v  If blood flow is reduced or stopped, the tissues affected can die.  This can progress to gangrene if not treated.

What Causes Vasculitis?

Vasculitis can be caused by many things, such as:

Ø  Infection of the blood vessel walls which is rare. When it occurs, bacteria, viruses or fungi infect the blood vessel and the white blood cells move in to destroy the infectious agents and damage the blood vessel in the process.  This is a serious condition and requires prompt medical treatment.

Ø  Immune or "allergic" reaction within the vessel walls.  This cause of vasculitis is more common.  The substances which trigger allergic reactions are called antigens. These antigens cause the body to produce proteins called antibodies which are supposed to bind to the antigen get rid of it.

Ø Antigens and antibodies which bind together are called immune complexes. Two primary ways in which immune complexes destroy antigens are:   by attracting white blood cells to digest the antigen, or  by activating other body substances to help destroy the antigens.

Ø  Unfortunately, some immune complexes do not serve their purpose of destroying antigens. Instead, they remain too long in the body and circulate in the blood and deposit in tissues. They commonly accumulate in blood vessel walls, where they cause inflammation.  It is likely that some white blood cells (cytotoxic cells) which kill infectious agents can also accidentally damage blood vessels and cause vasculitis.

Ø Vasculitis Caused By Lupus.  In some cases, the complexes contain DNA and anti-DNA antigens, or Ro (also called SS-A) and anti-Ro antigens. A recently discovered antibody, ANCA (anti-neutrophil cytoplasm antibody), can cause vasculitis in some individuals.

Signs and symptoms by type of vasculitis

General signs and symptoms common to most vasculitis types vary depending on which blood vessels and, as a result, which organ systems are affected.  However, general signs and symptoms that most people with vasculitis experience include: fever, fatigue, weight loss, muscle and joint pain, loss of appetite, and nerve problems, such as numbness or weakness.

Ø Behcet's syndrome. This condition causes inflammation of your arteries and veins, and often appears in your 20s and 30s. Signs and symptoms include mouth and genital ulcers, eye inflammation and acne-like lesions on your skin.
Ø Buerger's disease. Also called thromboangiitis obliterans, this condition causes inflammation and clots in the blood vessels in your extremities. Signs and symptoms can include pain in your hands, arms, feet and legs, and ulcers on your fingers and toes. This disorder is strongly associated with cigarette smoking.
Ø Central Nervous System Vasculitis. There are two types -- Primary angiitis of the central nervous system (PACNS) and Benign angiopathy of the central nervous system (BACNS). 
·        The main symptoms include many neurologic symptoms and signs: headache, focal weakness (such as occurs with a stroke), seizures, bleeding within the CNS, confusion, disorders of memory, and altered consciousness. All of these symptoms and signs are non-specific, and can be mimicked by a variety of other conditions. Thus, despite the “benign” part of the designation “BACNS”, some patients with so–called “benign“angiopathy of the CNS sustain significant neurological damage.
·        There are two main differences in the clinical presentations of PACNS and BACNS. First, whereas PACNS patients are more likely to develop symptoms subacutely and remain undiagnosed for months, those with BACNS are more likely to have relatively acute presentations and be diagnosed within weeks of onset (in either case, however, making the diagnosis is challenging). Second, without treatment, patients with PACNS tend to have progressively downhill courses that often lead to death. In contrast, BACNS patients may require less aggressive treatment than PACNS. A common difficulty comes in sorting out which patients are more likely to have clinical courses characteristic of BACNS, and which require the more aggressive treatment approach called for by PACNS.

This is the type of vasculitis that I typically get.  It is very difficult for the doctor’s to realize this is going on as mine is the PACNS form which develops slowly and is more insidious and subtle in its presentation.

Ø Churg-Strauss syndrome. This condition, also known as allergic granulomatosis and allergic angiitis, most commonly affects the blood vessels in your lungs. It's often associated with asthma.
Ø Cryoglobulinemia. This condition is often associated with hepatitis C infections. Signs and symptoms include a rash called purpura on your lower extremities, arthritis, weakness and nerve damage (neuropathy).
Ø Giant cell arteritis. This condition, which occurs in people older than 50, is an inflammation of the arteries in your head, especially your temples. Giant cell arteritis can cause headaches, scalp tenderness, jaw pain while chewing, blurred or double vision, and even blindness. Giant cell arteritis is often associated with polymyalgia rheumatica.
Ø Henoch-Schonlein purpura. This condition is caused by inflammation of the blood vessels of your skin, joints, bowel and kidneys. Signs and symptoms can include abdominal pain, blood in the urine, joint pain, and a rash called purpura on your buttocks, legs and feet. Henoch-Schonlein most often occurs in children, but it can occur at any age.

This is the other form of vasculitis I have experienced.  It usually shows up on my legs and in my kidneys.  It has been in what triggers the damage in the filtering system within my kidneys.  My BUN and creatinine levels are still too high for my rheumatologists liking.

Ø Hypersensitivity vasculitis. The primary sign of hypersensitivity vasculitis is red spots on your skin. It can be triggered by an allergy, most often to a medication or an infection.
Ø Kawasaki disease. Also known as mucocutaneous lymph node syndrome, this condition most often affects children younger than 5 years of age. Signs and symptoms include fever, skin rash and eye inflammation.
Ø Microscopic polyangiitis. This form of vasculitis affects small-sized blood vessels in your kidneys, lungs and skin. Signs and symptoms include skin lesions, fever, unintentional weight loss, glomerulonephritis — inflammation of the small blood vessels in the kidneys — and nerve damage.
Ø Polyarteritis nodosa. This form of vasculitis affects medium-sized blood vessels in many different parts of the body, including your skin, heart, kidneys, peripheral nerves, muscles and intestines. Signs and symptoms include a rash called purpura, skin ulcers, muscle and joint pain, abdominal pain, and kidney problems.
Ø Polymyalgia rheumatica. This condition primarily affects older adults and results in pain and inflammation of the large joints, such as your shoulders, hips and knees. Signs and symptoms include pain and stiffness in the muscles of your hips, thighs, shoulders, upper arms and neck. Polymyalgia rheumatica often occurs in association with giant cell arteritis.
Ø Rheumatoid vasculitis. This type of vasculitis can complicate the course of rheumatoid arthritis and usually occurs in people with a history of severe rheumatoid arthritis. Many different parts of the body, including the eyes, skin, hands and feet may be involved.
Ø Takayasu's arteritis. This form of vasculitis includes the largest arteries in the body, including the aorta, and typically occurs in young women. Signs and symptoms include arm weakness or pain with use (claudication), decreased or absent pulses, lightheadedness, headaches, and visual disturbances.
Ø Wegener's granulomatosis. This condition causes inflammation of the blood vessels in your nose, sinuses, throat, lungs and kidneys. Signs and symptoms can include shortness of breath, nasal stuffiness, chronic sinusitis, nosebleeds and frequent ear infections.

Prognosis for those of us with vasculitis…

The outcomes for people suffering from vasculitis vary with each person.  For many patients, especially if it is confined to the skin, vasculitis may be annoying but will never life-threatening. For these individuals, life can be normal -- or pretty close to it.  On the other hand, for a small number people which suffer from severe vasculitis involving major organ systems…in these cases, damage can occur so rapidly that treatment does not have time to work or the condition may be resistant to treatment. An attack of vasculitis can become quickly fatal or be permanently disabling for those affected.  For the vast majority of us with vasculitis, treatment is very effective. However, the vasculitis may disappear only to reoccur later and require treatment again or it may be suppressed but never really go away, so that some ongoing treatment is always required.

Sorry for being a long post…but it is a lot of information.  For now…my vasculitis is healing.  My headaches are gone and my vision is not being affected too much.  I have a large visual field defect in my right eye’s peripheral field that is permanent but I can see clearly.  I just sometimes walk into walls, doors, tables…cats…broken bricks.  As for the kidney involvement…we don’t know.  Since my labs are still too high, I am being optimistic in that it is taking longer for them to show improvement.  I feel better than I have in a long time and I am hoping to use the “R” word soon.  

Wednesday, July 7, 2010

Not a dry eye in the house...

Well...sort of. Today, I would like to address one of the secondary conditions that causes issues for me in my daily life.  

Sjögren’s syndrome is a chronic autoimmune disease in which a person’s white blood cells attack the moisture-producing glands throughout their body. Today, it is estimated that as many as four million Americans are living with this disease.

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.   

For some women, we don't like to talk about all the areas affected by Sjögren’s.  It affects my eyes.  I use artificial tears throughout the day and glycerin ointment at night to keep the moisture in.  It affects my mouth.  I chew sugar free gum as often as I can...unfortunately, I tend to swallow it without paying any attention.  Since it affects my mouth, it also affects my respiratory tract to some extent, my sinuses especially.  

About half of the time Sjögren’s syndrome occurs alone, and the other half it occurs in the presence of another autoimmune connective tissue disease such as rheumatoid arthritis, lupus, or scleroderma. When Sjögren’s occurs alone, it is referred to as “Primary Sjögren’s.” When it occurs with another connective tissue disease, it is referred to as “Secondary Sjögren’s.” 

All instances of Sjögren’s syndrome are systemic, affecting the entire body. Symptoms may remain steady, worsen, or, uncommonly, go into remission. While some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning. Early diagnosis and proper treatment are important — they may prevent serious complications and greatly improve a patient’s quality of life.  

Since symptoms of Sjögren’s syndrome mimic other conditions and diseases, Sjögren’s can often be overlooked or misdiagnosed. On average, it takes nearly seven years to receive a diagnosis of Sjögren’s syndrome. Patients need to remember to be pro-active in talking with their physicians and dentists about their symptoms and potential treatment options.

I was very lucky to have the rheumatologist be on top of this and get me to a great ophthalmologist who has kept my vision intact.  My dentist is very nice but...bah...nothing is going to help save my teeth from needing crowns...too many years of being bulimic combined with the chemo vomiting killing the enamel from my teeth.  Add that to the dry mouth...cavity central...weak replace as I can...but I hate going.  

Going to the dentist triggers a Raynaud's attack...but that is a topic for another blog post.  

Sunday, July 4, 2010

Happy 4th of July!

We must never forget what our founding fathers did so that this great nation could be free.  We must never forget the lives of those who died so that we could be here free.

In Congress, July 4, 1776
The unanimous Declaration of the thirteen united States of America

When in the Course of human events it becomes necessary for one people to dissolve the political bands which have connected them with another and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. —That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, —That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness. Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn that mankind are more disposed to suffer, while evils are sufferable than to right themselves by abolishing the forms to which they are accustomed. But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security. —Such has been the patient sufferance of these Colonies; and such is now the necessity which constrains them to alter their former Systems of Government. The history of the present King of Great Britain is a history of repeated injuries and usurpations, all having in direct object the establishment of an absolute Tyranny over these States. To prove this, let Facts be submitted to a candid world.
He has refused his Assent to Laws, the most wholesome and necessary for the public good.
He has forbidden his Governors to pass Laws of immediate and pressing importance, unless suspended in their operation till his Assent should be obtained; and when so suspended, he has utterly neglected to attend to them.

He has refused to pass other Laws for the accommodation of large districts of people, unless those people would relinquish the right of Representation in the Legislature, a right inestimable to them and formidable to tyrants only.

He has called together legislative bodies at places unusual, uncomfortable, and distant from the depository of their Public Records, for the sole purpose of fatiguing them into compliance with his measures.

He has dissolved Representative Houses repeatedly, for opposing with manly firmness his invasions on the rights of the people.

He has refused for a long time, after such dissolutions, to cause others to be elected, whereby the Legislative Powers, incapable of Annihilation, have returned to the People at large for their exercise; the State remaining in the mean time exposed to all the dangers of invasion from without, and convulsions within.

He has endeavoured to prevent the population of these States; for that purpose obstructing the Laws for Naturalization of Foreigners; refusing to pass others to encourage their migrations hither, and raising the conditions of new Appropriations of Lands.

He has obstructed the Administration of Justice by refusing his Assent to Laws for establishing Judiciary Powers.

He has made Judges dependent on his Will alone for the tenure of their offices, and the amount an payment of their salaries.

He has erected a multitude of New Offices, and sent hither swarms of Officers to harass our people and eat out their substance.

He has kept among us, in times of peace, Standing Armies without the Consent of our legislatures.

He has affected to render the Military independent of and superior to the Civil Power.

He has combined with others to subject us to a jurisdiction foreign to our constitution, and unacknowledged by our laws; giving his Assent to their Acts of pretended Legislation:

For quartering large bodies of armed troops among us:

For protecting them, by a mock Trial from punishment for any Murders which they should commit on the Inhabitants of these States:

For cutting off our Trade with all parts of the world:

For imposing Taxes on us without our Consent:

For depriving us in many cases, of the benefit of Trial by Jury:

For transporting us beyond Seas to be tried for pretended offences:

For abolishing the free System of English Laws in a neighbouring Province, establishing therein an Arbitrary government, and enlarging its Boundaries so as to render it at once an example and fit instrument for introducing the same absolute rule into these Colonies

For taking away our Charters, abolishing our most valuable Laws and altering fundamentally the Forms of our Governments:

For suspending our own Legislatures, and declaring themselves invested with power to legislate for us in all cases whatsoever.

He has abdicated Government here, by declaring us out of his Protection and waging War against us.

He has plundered our seas, ravaged our Coasts burnt our towns, and destroyed the lives of our people.

He is at this time transporting large Armies of foreign Mercenaries to compleat the works of death, desolation, and tyranny, already begun with circumstances of Cruelty & Perfidy scarcely paralleled in the most barbarous ages, and totally unworthy the Head of a civilized nation.

He has constrained our fellow Citizens taken Captive on the high Seas to bear Arms against their Country, to become the executioners of their friends and Brethren, or to fall themselves by their Hands.

He has excited domestic insurrections amongst us, and has endeavoured to bring on the inhabitants of our frontiers, the merciless Indian Savages whose known rule of warfare, is an undistinguished destruction of all ages, sexes and conditions.

In every stage of these Oppressions We have Petitioned for Redress in the most humble terms: Our repeated Petitions have been answered only by repeated injury. A Prince, whose character is thus marked by every act which may define a Tyrant, is unfit to be the ruler of a free people.

Nor have We been wanting in attentions to our British brethren. We have warned them from time to time of attempts by their legislature to extend an unwarrantable jurisdiction over us. We have reminded them of the circumstances of our emigration and settlement here. We have appealed to their native justice and magnanimity, and we have conjured them by the ties of our common kindred. to disavow these usurpations, which would inevitably interrupt our connections and correspondence. They too have been deaf to the voice of justice and of consanguinity. We must, therefore, acquiesce in the necessity, which denounces our Separation, and hold them, as we hold the rest of mankind, Enemies in War, in Peace Friends.

We, therefore, the Representatives of the United States of America, in General Congress, Assembled, appealing to the Supreme Judge of the world for the rectitude of our intentions, do, in the Name, and by Authority of the good People of these Colonies, solemnly publish and declare, That these United Colonies are, and of Right ought to be Free and Independent States, that they are Absolved from all Allegiance to the British Crown, and that all political connection between them and the State of Great Britain, is and ought to be totally dissolved; and that as Free and Independent States, they have full Power to levy War, conclude Peace contract Alliances, establish Commerce, and to do all other Acts and Things which Independent States may of right do. —And for the support of this Declaration, with a firm reliance on the protection of Divine Providence, we mutually pledge to each other our Lives, our Fortunes and our sacred Honor.