Thursday, December 23, 2010

Merry Christmas!!!





















I don't want a lot for Christmas
There is just one thing I need
I don't care about the presents
Underneath the Christmas tree
I don't need to hang my stocking
There upon the fire place
Santa Claus will make me happy
With the joy on Christmas Day
I just want you for my own
More than you could ever know
Make my wish come true...
All I want for Christmas is
You...

Oh I won't ask for much this Christmas
I won't even wish for snow
(And I) I'm just gonna keep on waiting
Underneath the mistletoe
I won't make a list and send it
To the North Pole for Saint Nick
I won't even stay awake to
Hear those magic reindeer click
I just want you here tonight
Holding on to me so tight
What more can I do
All I want for Christmas is you
You...

All the lights are shining
So brightly everywhere
And the sound of children's
Laughter fills the air
And everyone is singing
I hear those sleigh bells ringing
Santa won't you bring me the one I really need yea

I don't want a lot for Christmas
This is all I'm asking for
Standing right outside my door
Oh I just want you for my own
More than you could ever know
Make my wish come true
All I want for Christmas is
You...


All I want for Christmas...
All I want for Christmas is you...
All I want for Christmas...
All I want for Christmas is you...
All I want for Christmas...
All I want for Christmas is you...

Tuesday, December 14, 2010

Love

When you said I LOVE YOU...

I caught my breath.  I couldn't believe how unbelievably lucky I was to be loved by the most amazing, incredible man God ever saw fit to put in my life.

When you said I LOVE YOU...

I had wings to fly...strength to move mountains...courage to do the impossible...faith to leap into the abyss and know you would be there to catch me.

When you said I LOVE YOU...

I melted.  

YAMEMLMW
YAMLFAOT 
IMZADI

Thursday, November 11, 2010

Did you know??

Among the most frequently experienced autoimmune diseases for a lupus patient to have are Sjogren's Syndrome, multiple sclerosis, & Hashimoto's thyroiditis.  (I have Sjogren’s and Hashimoto’s...and have been repeatedly tested for MS.)

Lupus and multiple sclerosis (MS) are both autoimmune diseases where the body inappropriately attacks some part of the body.  In lupus, the immune system attacks various organs in the body – heart, lungs, kidneys, skin, blood vessels, brain and nerves.   In MS, the immune system attacks myelin, the fatty protective layer over nerves fibers in the brain and spinal cord causing neurological problems.

As with lupus, there is no definitive cause of MS and a combination of factors may play a part – they believe environmental and genetics play a role in both.  Another factor lupus and multiple sclerosis have in common is that there is no good test for either disease – despite what Lady GaGa claimed.  There is NO single test to say YES or NO to having lupus.  The same holds true for MS.  So…the diagnosis relies on a set of characteristic symptoms, signs and lab tests that can't be explained by another diagnosis – a diagnosis of exclusion.

Don’t get me wrong.  Lupus and MS are very different diseases…but they have a lot of commonalities.  In addition to being autoimmune diseases, both typically affect the same age and gender population -- younger women -- and both can follow a remitting-relapsing pattern. While the nerves are the primary target of MS, some lupus patients also have definitive neurological issues as well.

For some of us Lupus patients with a lot of crossover symptoms, we realized a long time ago that we don't fit into the same cookie cutter mold that a lot people do.  I know from months and months of testing for MS, that it is pretty much the same for MS patients as well.

I encountered a very angry 23 year old young woman, with a huge chip on her shoulder because she has the most aggressive form of MS.  I met her through a forum we both post on.  She was not open to any words of support nor was she even open to someone asking questions about what things her doctors were doing to help her disease and to cope with her disease.  This young woman reacted so hostilely to me that she openly called me an idiot in front of our peers on this forum.  She told me that I had no clue what she was going through and that her life was over in three year when she was going to become crippled and never walk again.  I tried to tell her not to give up hope because a great deal could happen in three years.  I even tried to share with her that I deal with lupus and all the stuff that goes with it. Her response was. "So what, like anyone cares you have something that isn't ruining your life or could cause you to die or anything."  Then she logged off without waiting for my reply. 

Here it is:

"That is where you are wrong.  You do not walk in my shoes to know what burdens I have or trials I go through.  You choose to see life as having cheated you out of something and you MISS ALL OF THE GLORIOUS WONDERS AROUND YOU.  You are the foolish one.  You exist in this world but you do not LIVE in this world.  You want everyone around you to PITY and FEEL SORRY for you.  Guess what?  I don't.  I feel sorry for those around you for what you put them through with your vile, hateful attitude.  

You chose to spew venom, when you could be a role model...be a positive influence on this world for whatever TIME YOU HAVE. None of us know when our last breath will be, but we have a duty to ourselves and those who love us to make each day precious...to make each day a treasured moment.  You miss all the miracles around you by only seeing the worst case scenario.  I told the people important to me that I loved them.  I worked a full day at my job.  I saw the sunset.  LIFE DOESN'T GET ANY BETTER THAN THAT!  

It's a choice.  I choose to see the good and positive in life.  AND guess what?  I AM LIVING.  So who is the idiot in this?  Not me."


Friday, October 8, 2010

Starting an Exercise Program

ALWAYS TALK TO YOUR DOCTOR BEFORE BEGINNING ANY EXERCISE ROUTINE! J
DOOO-EEEEEEEET!

Starting an Exercise Program

It is always important to discuss exercise plans with your doctor, all of your doctors.  If you can, you should start with supervision from a physical therapist or qualified athletic trainer.  They can help show you what equipment will work with your limitations.


Other things  you need to do:
  • Apply heat to sore joints (optional).
  • Stretch and warm up with ROM exercises.
  • Start strengthening exercises slowly and gradually progress to small weights, theraband, weight machines, etc.
  • Use cold packs after exercising (optional).
  • Add aerobic exercise.
  • Consider appropriate recreational exercise (after doing ROM, strengthening, and aerobic exercise).
  • Ease off if joints become painful, inflamed, or red.
  • Choose the exercise program you enjoy most and make it a habit.

What To Do During a Flare 

Exercises that seem easy one day may be too much on days when your joints are more painful and swollen. When this happens, cut back on the number of exercises and gradually add more when your tolerance increases. If you notice a significant decline in your performance, talk to your doctor or therapist immediately.

Do not do aerobic/endurance or strengthening exercises when your joints are swollen and painful. If just one or two joints are swollen or painful, you can adapt your exercises to put less stress on those joints. For example, if your knee flares up, switch to exercises in the water instead of walking. Also, next time you exercise, decrease the number of times you do each exercise, or do them more gently.

Stop exercising immediately if you have chest tightness or pain, or severe shortness or breath or if you feel dizzy, faint, or sick to your stomach.

How Much Exercise is Too Much? 

If exercise causes joint or muscle pain that lasts for more than 2 hours after exercising, it is too much. However, it is important to realize that when beginning a new exercise program you may feel that your heart beats faster, you breath faster, and your muscles feel tense. You may also feel more tired at night but awake feeling refreshed in the morning. These are all normal reactions to exercise that indicate your body is adapting and getting into shape.

People with lupus should adjust their exercise program when they notice any of the following signs of too much exercise: 
  • Unusual or persistent fatigue
  • Increased weakness
  • Decreased ROM
  • Increased joint swelling
  • Continuing pain (greater than 2 hours after exercising)

If you have not been exercising on a regular basis or have pain, stiffness, or weakness that interrupts your daily activities, start your exercise program with flexibility and strengthening exercises only. 


If you have any questions or topics you would like me to tackle, send them to lupine.butterfly@gmail.com.
Thanks for reading!!

Thursday, October 7, 2010

Dealing with Lupus Fatigue (Part 3)

“Might as well jump. Jump!  Might as well jump. Jump! 
Go ahead, jump. Go ahead, jump. Jump!”
OUCH I’VE FALLEN AND I CAN’T GET UP!!!!

EXERCISE

If your joints hurt, you may not feel like exercising. However, if you don't exercise, your joints can become even more stiff and painful. Exercise is beneficial because it keeps your muscles, bones and joints healthy. If pain is a limiting factor, gentle, slow, active or passive range of motion is important. This will keep the joints active and prevent them from getting stiff.

It is important to maintain strong muscles. The stronger the muscles and tissue around the joint, the better they will be able to support and protect those joints  even those that are weak and damaged. If you do not exercise, your muscles become smaller and weaker, and your bones can become more brittle and prone to fracture.

Many people with lupus keep painful joints in a bent position because at first it is a more comfortable position. If joints are left in one position for too long (without movement), they may lose their ability to straighten. Exercise helps keep joints mobile and flexible, which allows for daily tasks to be completed as independently as possible.

Risks of Exercise

The most common risk of exercise is aggravating your lupus by working your joints or muscles too much. This can happen if you exercise too long or too hard, especially when you are beginning an exercise program. It is important to start out slow and monitor how your body reacts to the exercise.

Three Main Types of Exercise

People with lupus often benefit from a balanced exercise program including different types of exercise. Three main types of exercise that should be included in your exercise program are range-of-motion, strengthening, and endurance exercises.

Range-of-motion (ROM) exercises reduce stiffness and help keep your joints flexible. ROM is the normal amount your joints can be moved in certain directions. There are two types of ROM exercises: passive range-of-motion and active range-of-motion.

Useful during a flare, passive range-of-motion (PROM) exercises involve someone assisting with performance of the movement and there is no muscle contraction. An example using the shoulder flexion exercise would be someone moving your arm forward and above your head.

Active range-of-motion (AROM) exercises are useful immediately following a flare. They involve you performing the movement without assistance throughout the full range of movement. A muscle contraction is present in this type. The shoulder flexion example would be actively raising your arm forward and above your head.

The second main type of exercise, strengthening exercises, help maintain or increase muscle strength. Strong muscles help keep your joints stable. Two common types of strengthening exercises for people with lupus are isometric exercises, in which you tighten the muscle but do not move the joint, and resistive isotonic exercises in which the joint is moved.

In an isometric exercise, there is no joint movement, the overall muscle length stays the same, and a muscle contraction is present. These exercises are useful for joint strengthening with joint protection. In the shoulder flexion, facing a wall, you would place your fist firmly against the wall and push forward.

Resistive isotonic exercises involve performing a movement with some form of external resistance (i.e. theraband, free weights, machines). A muscle contraction is present and this type is indicated for high level strengthening. In the shoulder flexion exercise, you would have a weight in your hand and raise your arm forward and above your head.

The third main type of exercise is aerobic or endurance exercises which improve cardiovascular fitness. They make your lungs more efficient and give you more stamina so that you can work longer without tiring as quickly. Some of the most beneficial endurance exercises for people with lupus are walking, water exercises, and riding a stationary bicycle.


Tomorrow, I will discuss how you start an exercise program…

Wednesday, October 6, 2010

Dealing with Lupus Fatigue (Part 2)


“But, I would walk 500 miles, and I would walk 500 more  just to be that man who walks a thousand miles to fall down at your door!!!”
UH OH!!!



PRINCIPLES OF ENERGY CONSERVATION

Avoid rushing
I highly recommend establishing a preplanned schedule for work and resting periods throughout your day and week.  Please remember to allow a 30 to 60 minute rest period after each meal and after any particularly strenuous activity.  So, the first step is planning your work by making weekly and daily schedules.  Be sure to spread the heavy and light tasks throughout the day and even the week if necessary.  More importantly, learn to set priorities for each of the tasks and eliminate unnecessary tasks.  To eliminate, you may need to learn to say “NO” to tasks that you truly cannot take on.  Be honest with yourself when making that assessment.

Avoid unnecessary motions 
Many of us don’t realize that we are using unnecessary motions and movements in our daily lives.  When you have only a limited amount of energy to use, every motion/movement you make counts and takes away from that energy pool.  In my work day, I problem solve nonstop for my faculty.  I will have to get up and traverse the floor of my building upwards of 15 to 20 times in one day.  I wear a pedometer and always get in my 10,000 steps before I leave for the day.  Some days I get in 12,000 or more steps.

v  Sit instead of stand for any lengthy task (5 minutes plus).
v  Avoid holding or lifting by sliding or using a wheeled cart.
v  Avoid overreaching and bending by arranging work areas within normal reach.
v  Arrange your specific work center with supplies and equipment at point of first use to minimize extra trips.
v  Live simply, avoid unnecessary cluttering of items.
v  Use modern labor saving equipment.
v  Use good posture to prevent fatigue.

Proper working conditions 
This is a tough one for many of us.  Making sure your work space is ergonomically set up and that you are using proper work heights according to job and individual needs and limitations.  Things you also need to have is good ventilation and good lighting.  You should try to work in a relaxed manner with things like soft music, calming fragrances from a candle or diffuser.  Always…Always…ALWAYS wear comfortable clothing and shoes.

Keep your body temperature comfortable 
I prefer 70ºF temps.  This keeps me from being too cold and unable to move my stiff joints, or from being too hot and unable to move because my energy and body are melting into the floor.  So, during summer months perform physically stressful activities during the cooler part of the day or evening and during winter do them indoors.  Be sure to do your exercise program in a comfortable environment as in padded equipment, floors. etc.

Leisure 
Seems silly to even suggest this but do not overdo it and use up all of your energy.  You must listen to your body, and rest before you feel tired or you run the risk of triggering a flare or compromising yourself enough to get sick.  Remember to avoid stress in social activities.  If you get stressed doing them, then maybe you need to find something different because you need to do something you find enjoyable and relaxing.  These activities should help you feel better every day and be like a reward for yourself.


Stay tuned!!! Tomorrow I will finish with types of appropriate exercise…



Tuesday, October 5, 2010

Dealing with Lupus Fatigue (Part 1)

“LET’S GET PHYSICAL…LET ME HEAR YOUR BODY TALK!!”
OUCH!!!!  Maybe not!

A very common problem experienced by many patients living with lupus is progressive reduction in activity/exercise. What typically will follow is a vicious cycle of inactivity and deconditioning which results in an increase in symptoms…which then leads to a further reduction in activity in order to avoid the pain and discomfort. Thus, making the end result be our inability to comfortably accomplish even the most basic activities of daily living.

Living in such a state of chronic distress places a tremendous drain on a person's ability to function psychologically, physically, and emotionally. It is therefore important to consider alternative methods to reduce or prevent the onset of fatigue. The goal should be to develop a healthful daily routine including exercise and energy conservation techniques.

Most of us are advised to set priorities and maintain a reasonable schedule. We are encouraged to try to develop an activity/rest program based on our fatigue patterns which will allow us to utilize our energy most effectively. You should consider fatigue patterns including onset, duration, intensity, and aggravating and alleviating factors. 

For me, energy conservation is the way my activities or tasks are completed. I conserve energy by pacing myself and simplifying my work routines. The principles of energy conservation are designed to help you reduce the strain on your body.

You can pace yourself by alternating periods of work, activity, therapeutic exercise and rest in order to avoid fatigue. Pacing is important because fatigue or over activity can leave you drained of all energy. It allows energy to last through the day and makes it possible to do things that are important.

Pacing works only if a schedule is developed each day of the week. When developing a schedule, it is important to set priorities. To set priorities, it is necessary to analyze each task or activity by asking these questions: 
  1. Is the task necessary?
Ø  Can it be eliminated?
  1. Why am I doing this task?
  2. What purpose does it serve?
  3. Do I need to do it or can someone else?
  4. Who can help to do it?
  5. Where is the best place to do it?
  6. When should it be done?
  7. What is the worst possible thing that could happen if that task is not done?
Tomorrow I will continue with the Principles of Energy Conservation!!   

Saturday, September 18, 2010

Remember...

I wish doctors would remember that the person in front of them has feelings...hopes....dreams...aspirations.  Remember that we don't want to see them every month....have labs every week...expensive and sometimes painful tests monthly...or procedures that don't help.  WE don't want to see you acting thrilled because you think we have something NEW and EXCITING...something worthy of being written up for a journal.

I am Delana.

I am a MOM! 
I am a friend. 
I am a child. 
I am a student because life is about learning.  
I am a teacher because I can help others learn. 
I am an employee.
I am a boss.


I feel pain every day with every movement.  Yet I smile because I see life as a precious gift.  I laugh because there is joy to be found in most everything. I scream when frightened or my team lost or sometimes just to vent.  My eyes leak...well because sometimes I am overcome with happiness... or the physical pain is more than I can handle at that moment...or when I get angry, weird I know but still it happens...or when I feel emotional pain, either from someone hurting my feelings or when I think I may have hurt someone's feelings....and I will admit it...sappy movies and books.

I can and do make a difference in people's lives.

HOWEVER...Pay attention here Doctors....I am not MY compilation of diseases.  I sure as hell am not YOUR BLEEPING CASE STUDY.  I do not wish to V-8 slap you in the forehead.

I will be happy to help others by working WITH you as a case study if you can respect me as a patient, and person and not treat me as some SIDESHOW FREAK you want to dissect.  Remember...I AM DELANA...I have lupus.  I am a mom and as such, I can kick your ass!

Monday, July 26, 2010

You are everything...

This song is powerful and moving.







EVERYTHING
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 purpose...you'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.

Ð
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.
Î

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.