A Lupus Awareness Day message from a Lupus warrior’s daughter…

My mom was diagnosed with Lupus 11 years ago. It has been a defining obstacle in my life thus far, as we are incredibly close and I am her only child; an obstacle that has taught me invaluable lessons about life and relationships. Today is Lupus Awareness day and I feel inspired to send a message out to my friends and family and to whoever else may take a few minutes to take it in….

When one falls ill with a debilitating chronic illness, special moments are not to be taken for granted. That’s why when my mom was invited to be a guest at Lupus LA’s annual Orange Ball, we didn’t skip a beat! We bought dresses and got dolled up for, refreshingly, something we could do together that didn’t entail a doctor visit, blood drawing, or discussing whether her best treatment option is steroids or chemotherapy.

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Lupus is an auto-immune disease, one where the immune system becomes impaired and mistakes the body’s own organs and tissues as outside invaders – it builds antibodies to it’s own system and attacks it as if it were an outside pathogen. Lupus is systemic, in some patients it will target a specific organ, causing the patient to need life sustaining surgery(ies), and in others it affects numerous vital body functions (vision, cognition, etc). Regardless of what form one’s disease my take, pain and exhaustion are thematic symptoms.

Life changes when you have an illness such as Lupus or any other chronic disease of this degree, and it is not an easy adjustment. Someone who may have once been an outdoor adventurer and workaholic commonly becomes confined to their home for periods of days, weeks and sometimes months. They commonly lose their ability to maintain their beloved career and to navigate life’s routines such as going to the grocery store, the post office, bringing the dog to the groomers, going up the stairs, walking to the bathroom, boiling an egg, or showing up to their best friend’s surprise birthday party in time for the surprise. As the disease evolves to be a more normal part of one’s life, friends sometimes slowly drift and special events become fewer and less frequent. Those special moments we live for and need as members of a social species, such as birthdays, weddings, girls nights, boys nights, dates, etc… become fewer and fewer and loneliness can become one of this diseases most debilitating symptoms.

Imagine having the worst virus you’ve ever had, but it never goes away. Truly, imagine that.

 Now imagine the philosophy that our greatest wealth is our health and when we are fortunate enough to have our health, we have the responsibility to serve one another and to uplift one another, especially those whose health – and in effect – physical freedoms have been compromised. This is a philosophy that I possess, and clearly it is a learned philosophy based on my life’s experiences.

 My message for World Lupus Day this year is that while there is no cure for this disease, there is a cure for it’s worst symptom. That cure lies in the actions friends, family members and people in the community. Signs of recognition, encouragement and support, I assure you will never be taken for granted by a Lupus warrior or a warrior of any other disease or disability, and will serve as the best and most potent medicine!

I’ve borrowed this list of small and easy, yet meaningful actions and gestures that, I assure you, would never be taken for granted!

 • Bring over a comedy DVD and popcorn! Laughter is a powerful medicine!

 • Burn a CD and fill it with songs that make them happy. You can even make a “themed” tape. For example: songs for relaxing, songs to wake up to, etc.

 • Buy nice pajamas appropriate for the illness and medical circumstance. For example, pajamas that are easy on/off for an elderly friend or someone who will be going in and out of tests.

 • A box of pretty note cards and have them all be pre- stamped- this way the patient just has to write notes to whoever they want, and they have everything right there.

 • When the patient feels up to it, offer to drive him or her to do something special, but short in timing. How about a manicure, ice cream or cruise to the beach? Something quick enough to get out of the house, but not too long to be exhausting.

 • Send a card! It is so nice to get a “cheer up” or “thinking of you” card in the mail. Sometimes when people are home-bound the only thing they look forward to is the mail coming and when there is something nice in the mail box mixed in with bills and junk mail it will make the experience even better.

 • Offer to pet-sit! Even if it is taking a pet out for a short walk, that will be a wonderful gift of a short peaceful rest. It will also put the patient’s mind at ease to know that their pet is getting attention and activity when they might not be able to.

 • Send a care package. Get a box and fill it up with goodies. Remember how you felt at summer camp when you got a surprise package? It was so much fun to rip it open and see what was inside. Nothing has to be expensive, you can go to the dollar store and get fun little things. The idea is just to make the patient smile. Tip: I have always liked when people have written in a note “No thank you necessary.” I get a gift without the guilt of wanting to send a thank you note.

 • Send an email. Don’t wait for the right time. Don’t feel bad because you haven’t been in touch. It is always good to get a nice email. It is always refreshing to hear from old friends. Just start writing. If you want to make the email even better, just sign it “Reply when you can, no rush.” This way the receiver gets your well wishes without having to worry about a reply.

 • Offer to take your friend to other doctor appointments. Sometimes when we are so focused on one area of our health, we can unintentionally neglect other areas. Offer to help your friend keep up with other routine appointments like dentists, eye exams, obgyn, or even a regular check up. Now is not the time to let other areas of health go.

 • Rent or buy a portable DVD player with a selection of movies and headphones to use in the hospital (when they wake you up at all hours of the night or you can’t sleep. I personally had this loaned to me and I loved it. It helped pass the time so much to get into a movie!

 • Down pillows or any new pillows with fun pillow cases for comfort in the hospital and to also cheer up your hospital room or bedroom at home. Hospital beds are horribly uncomfortable and all the white and green sheets are very depressing. Just check what hospital rules are.

 • Cute socks with rubberized/non skid bottoms, since you often have to get up and walk around, but don’t want to put slippers on. There are so many cute pairs which are very inexpensive.

 • Be sure to have their birthday noted on your calendar and don’t forget to send a happy birthday card!

 • Magazines that are personalized to the patients hobbies, tastes etc.

 • Pretty diary – really good to write down what is going on, keep track of Dr’s instructions, and use as a memory book, of sorts.

 • Ready-to-use craft kit, such as a scrap booking kit. It is good to feel productive or creative even if you can’t leave bed.

 • A nice facial or body moisturizer, medications, especially steroids often dry out the skin.

 • NON-hospital food! Bring the patient his or her favorite snack, or take-out from her favorite restaurant.

 • Offer to do things for their apartment or house while they are sick or in the hospital. Do they need the mail taken in? Do they need some groceries bought so that their refrigerator is not bare when they get home?

 • If you can afford it, hire a cleaning service to come over for the day and do a really good cleaning on the house. This is a great gift for the first day home from the hospital, and also good for when the patient is home trying to get well and is staring at all the dust piling up, but may be too weak to clean. This will help put their mind at ease, but also it will make for a cleaner healthier environment.

 • Cook dinners that are easy to freeze and defrost. When you are sick you are too tired to cook, so helping to make easy to heat meals is a wonderful treat. Put post it notes on the dinners with easy instructions to re-heat.

 • If you are not a good cook, send some gift cards to local restaurants or take out. The worst feeling is to be tired, but also in a financial pinch due to medical bills. This helps so much.

 • Sounds silly—but just ask! Ask what you can do to help, or if they need anything.

 • Bring board games to help them have fun and start interacting again. It is also a great conversation starter for those of you who may get awkward visiting someone who is sick.

• Happy nothing! Sometimes we only send our loved ones flowers or get well gifts when they are actually in the hospital or when things get particularly bad. But I think that makes the patient only feel love or attention when things are horrible. Do things really have to get that bad to be a good friend? If you love them today, show them today. If you can, send a bouquet of flowers just to brighten their day. There are so many gift delivery companies online that can send a wide variety of gifts. Every day is a struggle when battling a chronic condition, or going through lengthy medical treatments. Maybe you can make this day a bit better. Don’t wait for a reason, making your friend feel better and surprising them is reason enough. Who knows? You may just brighten their whole outlook and turn their day around.

 • Help with regular every day tasks. When I am sick sometimes I am overwhelmed with the every day jobs or errands that I no longer have energy for. One of the best gifts I have gotten is when friends or family have offered to help me for 1 hour to do anything. Just having company helped make the time pass and helped encourage me to do the jobs I probably couldn’t do before. For example, in the change of seasons going through clothes or straightening your closets can be a daunting task, but if you help while your sick friend lays on the bed, then you can get the job done, feel organized and talk too.

 • Bring over a warm fuzzy blanket to nap with. Something cuddly always cheers anyone up. And even if you think the person you are visiting has a lot of blankets, there is something special about the one you are going to bring- it is new, and it is from you!

 • Don’t forget the standard bouquet of flowers to brighten up the room, especially if you know someone loves flowers.

 You do not need to spend a lot of money. You can be thoughtful in so many ways. The point is to do something, and do something today. Sometimes it is hard for a patient to ask for help. Just do it! The hardest thing about chronic disease is that it is chronic. A friend with a really bad flu may receive flowers that week. One that is sick all the time often gets nothing. But they are not any less sick, sad, frustrated or lonely. What they need is love and support more than ever. When everyone else forgets that they are still in the struggle of a chronic illness, please remember. It didn’t go away, I they forget.

 (http://www.butyoudontlooksick.com/wpress/articles/caregiver-support-and-tips/36-easy-things-that-you-can-do-to-make-the-life-of-your-chronically-ill-friend-a-bit-better/)

 

This list is intended to inspire! Apply these ideas to an elderly neighbor, someone who may be going through Cancer treatments, anyone who is in a wheelchair or who may use a walker, and of course a loved one with a chronic illness! Also keep in mind that gestures such as these have a positive trickle down effect on the caregiver as well! The best medicine is love, and even from a distance it can be very easy to give!

– Cherilyn

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What is CNS Lupus?

CNS-fatigue

Lupus is an autoimmune disease that can affect almost any part of your body, including the nervous system and brain. There are several terms doctors use to describe this: neuropsychiatric lupus (NPSLE), neurocognitive dysfunction, or central nervous system lupus (CNS lupus).

The nervous system has three parts, any of which may be affected by lupus.

·  The central nervous system (CNS)—The brain and spinal cord.

·  The peripheral nervous system (PNS)—The network of nerves that connects the brain and spinal cord to the rest of the body, and gives skin and muscles the signals needed for sensation and movement.

·  The autonomic nervous system (ANS)—Allows communication between spinal and peripheral nerves and the brain and internal organs, and controls functions like breathing, blood flow, and heart rate.

People with lupus can experience a number of complications when their nervous system is affected. The symptoms may come on suddenly or may come and go, but they will vary depending upon the location and extent of the tissue injury. These symptoms also can be present in other diseases, so diagnosing lupus-related nervous system disorders is often difficult.

Neurologists are physicians who specialize in the nervous system. They may rely on a number of diagnostic tools to determine whether lupus is involved in cognitive problems:

·      Brain scans (MRI and CT)

·      Electroencephalograms (to capture the electrical pattern of brain activity)  ·      Spinal tap (to examine fluid in the spinal column)

·      Behavioral and cognitive tests may also be done to find out if your memory or other mental abilities have been affected.

Depending on the symptoms, a variety of medications are available to treat lupus-related nervous system disorders, including non-steroidal anti-inflammatory drugs, antimalarials, and steroids. Your response to treatment may be rapid or gradual over several months. For many people with lupus, nervous system involvement is completely reversible.

Central Nervous System (CNS):

When lupus affects your central nervous system, many symptoms may occur, including:

·      Headaches

·      Confusion

·      Fatigue

·      Depression

·      Seizures

·      Strokes

·      Vision problems

·      Mood swings

·      Difficulty concentrating

·   Lupus Fog or Cognitive Dysfunction

As many as half of all people with lupus describe feelings of confusion, fatigue, memory loss, and difficulty expressing their thoughts. This collection of symptoms is termed cognitive dysfunction, although many people with lupus call it “lupus fog.” Cognitive dysfunction most often affects people with mild to moderately active lupus. The causes of these symptoms, and the reasons the symptoms tend to come and go, are unknown.

Living with cognitive dysfunction can be very frustrating. However, you can learn to improve your concentration and lessen confusion and memory loss with a variety of coping skills, including puzzles, games, biofeedback, using a daily appointment calendar, and balancing daily activities to reduce stress.

Lupus Headache  Compared with the general population, people with lupus may be twice as likely to experience migraine-like lupus headaches, commonly known as lupus headaches. The features of lupus headaches are similar to migraines and may be seen more often in people who also have Raynaud’s phenomenon. However, headaches can also be caused by vasculitis, a symptom of active lupus due to inflammation of the blood vessels.

Medication Side Effects:

Medications used to treat lupus can cause side effects that are similar to the symptoms of CNS lupus. If you have symptoms of CNS lupus you should consult a neurologist who can determine which symptoms are side effects of medication and which are due to lupus. The drugs most known for causing symptoms like those of CNS lupus are:

·      Non-steroidal anti-inflammatory drugs (NSAIDs) – May cause headache, dizziness, confusion, and in rare instances, meningitis-like symptoms

·      Antimalarials – Very high doses (not usually given for lupus) may cause manic behavior, seizures, psychosis

·      Corticosteroids – May cause agitation, confusion, mood swings, psychosis, depression 

·      Anti-hypertensive medications – May cause depression or loss of sex drive  

A serious form of lupus called CNS vasculitis may occur when there is inflammation of the blood vessels of the brain. Characterized by high fevers, seizures, psychosis, and meningitis-like stiffness of the neck, CNS vasculitis is the most dangerous form of lupus involving the nervous system and usually requires hospitalization and high doses of corticosteroids to suppress the inflammation.

My team has recently confirmed that I’m coping with cerebral vasculitis…. what is it?

 

 

 

 

What is vasculitis?
Vasculitis is the inflammation (swelling) of the blood vessels, the network of hollow tubes that carry blood throughout the body. Vasculitis can affect very small blood vessels (capillaries), medium-size blood vessels (arterioles and venules), or large blood vessels (arteries and veins). If blood flow in a vessel with vasculitis is reduced or stopped, the parts of the body that receive blood from that vessel begin to die.

What causes vasculitis?
In most cases, the exact cause is unknown, but the immune system (which helps keep the body healthy) plays a role. While the immune system usually works to protect the body, it can sometimes become “overactive” and attack the body. In most cases of vasculitis, something causes an immune or “allergic” reaction in the blood vessel walls.

What is central nervous system vasculitis?

Central nervous system (CNS) vasculitis is inflammation of blood vessel walls in the brain or spine. (The brain and the spine make up the central nervous system.) CNS vasculitis often occurs in the following situations:

• accompanied by other autoimmune diseases such as systemic lupus erythematosus, dermatomyositis, and, rarely, rheumatoid arthritis;
• infection, such as viral or bacterial;
• systemic (affecting the whole body) vasculitic disorders (Wegener’s granulomatosis, microscopic polyangiitis, Behçet’s syndrome);
• it can occur without any associated systemic disorder. In this case, the vasculitis is only confined to the brain or the spinal cord and it is referred to as primary angiitis of the CNS (PACNS).

What is the cause of central nervous system vasculitis?
How the vessels in the brain become inflamed is not entirely clear. In some vasculitic diseases, abnormal antibodies (autoantibodies) attack white blood cells, which attack vessel walls and cause inflammation and destruction of the vessel wall. Infection caused by a virus can also cause CNS vasculitis.
Is central nervous system vasculitis dangerous?
CNS vasculitis can be a serious condition. The inflamed vessel wall can block the flow of oxygen to the brain, causing a loss of brain function. In some cases, CNS vasculitis is life-threatening.

What are the symptoms of central nervous system vasculitis?
Symptoms of CNS vasculitis can include the following:
• severe headaches that last a long time
• strokes or transient ischemic attacks (“mini-strokes”)
• forgetfulness or confusion
• weakness
• problems with eyesight
• seizures
• encephalopathy (swelling of the brain)
• sensation abnormalities
What is vasculitis?
Vasculitis is the inflammation (swelling) of the blood vessels, the network of hollow tubes that carry blood throughout the body. Vasculitis can affect very small blood vessels (capillaries), medium-size blood vessels (arterioles and venules), or large blood vessels (arteries and veins). If blood flow in a vessel with vasculitis is reduced or stopped, the parts of the body that receive blood from that vessel begin to die.
What causes vasculitis?
In most cases, the exact cause is unknown, but the immune system (which helps keep the body healthy) plays a role. While the immune system usually works to protect the body, it can sometimes become “overactive” and attack the body. In most cases of vasculitis, something causes an immune or “allergic” reaction in the blood vessel walls.

What are the symptoms of vasculitis?
Symptoms of vasculitis include:
• skin rashes
• fatigue (tiredness)
• weakness
• fever
• joint pains
• abdominal (stomach) pain
• kidney problems (including dark or bloody urine)
• nerve problems (including numbness, weakness, and pain)
Other symptoms can occur, depending on the area of the body affected by vasculitis. If a blood vessel with vasculitis is small, the vessel may break and produce tiny areas of bleeding in the body. These areas will appear as small red or purple dots on the skin. If a larger vessel is inflamed, it may swell and produce a nodule (lump or mass of tissue), which may be felt if the blood vessel is close to the skin surface.


What is central nervous system vasculitis?
Central nervous system (CNS) vasculitis is inflammation of blood vessel walls in the brain or spine. (The brain and the spine make up the central nervous system.) CNS vasculitis often occurs in the following situations:
• accompanied by other autoimmune diseases such as systemic lupus erythematosus, dermatomyositis, and, rarely, rheumatoid arthritis;
• infection, such as viral or bacterial;
• systemic (affecting the whole body) vasculitic disorders (Wegener’s granulomatosis, microscopic polyangiitis, Behçet’s syndrome);
• it can occur without any associated systemic disorder. In this case, the vasculitis is only confined to the brain or the spinal cord and it is referred to as primary angiitis of the CNS (PACNS).


What is the cause of central nervous system vasculitis?
How the vessels in the brain become inflamed is not entirely clear. In some vasculitic diseases, abnormal antibodies (autoantibodies) attack white blood cells, which attack vessel walls and cause inflammation and destruction of the vessel wall. Infection caused by a virus can also cause CNS vasculitis.


Is central nervous system vasculitis dangerous?
CNS vasculitis can be a serious condition. The inflamed vessel wall can block the flow of oxygen to the brain, causing a loss of brain function. In some cases, CNS vasculitis is life-threatening.


What are the symptoms of central nervous system vasculitis?
Symptoms of CNS vasculitis can include the following:
• severe headaches that last a long time
• strokes or transient ischemic attacks (“mini-strokes”)
• forgetfulness or confusion
• weakness
• problems with eyesight
• seizures
• encephalopathy (swelling of the brain)
• sensation abnormalities


How is vasculitis diagnosed?
The diagnosis of vasculitis, including CNS vasculitis, is based on a person’s medical history, symptoms, a complete physical examination, and the results of special laboratory tests. Blood abnormalities that are found in vasculitis include:
• anemia (a shortage of red blood cells)
• a high white blood cell count
• a high platelet count
• kidney or liver problems
• allergic reactions
• immune complexes
• antibodies (tools the body uses to fight off threats)
• elevation of inflammatory markers
In PACNS, when the vasculitis is only confined to the brain or spinal cord, the above symptoms and signs are often lacking and patients present with symptoms of CNS vasculitis only.
Other tests may include X-rays, tissue biopsies (taking a sample of tissue to study under a microscope), and blood vessel scans. The physician might also want to examine the spinal fluid to see what is causing the inflammation. This test is often performed in CNS vasculitis.
To help in the diagnosis of CNS vasculitis, the physician may order a magnetic resonance imaging or angiogram of the brain. An angiogram can show which blood vessels are narrowed.
Because other conditions can cause some of the same brain vessel abnormalities as CNS vasculitis, a brain biopsy is the only way to make certain of a diagnosis. A brain biopsy can distinguish between CNS vasculitis and other diseases that may have similar features.


How is central nervous system vasculitis treated?
CNS vasculitis is usually treated with steroids. High-dose steroids such as prednisone, in combination with cyclophosphamide (a medication that decreases the immune system’s response to autoimmune diseases), are generally used. In some cases, high-dose steroids alone are tried first; if that does not treat the disease, cyclophosphamide is added. Treatment must be continued for a prolonged period, sometimes for life.
If the patient has another illness (such as lupus) that is related to the vasculitis, then that illness also needs to be treated.

The diagnosis of vasculitis, including CNS vasculitis, is based on a person’s medical history, symptoms, a complete physical examination, and the results of special laboratory tests. Blood abnormalities that are found in vasculitis include:
• anemia (a shortage of red blood cells)
• a high white blood cell count
• a high platelet count
• kidney or liver problems
• allergic reactions
• immune complexes
• antibodies (tools the body uses to fight off threats)
• elevation of inflammatory markers
In PACNS, when the vasculitis is only confined to the brain or spinal cord, the above symptoms and signs are often lacking and patients present with symptoms of CNS vasculitis only.
Other tests may include X-rays, tissue biopsies (taking a sample of tissue to study under a microscope), and blood vessel scans. The physician might also want to examine the spinal fluid to see what is causing the inflammation. This test is often performed in CNS vasculitis.
To help in the diagnosis of CNS vasculitis, the physician may order a magnetic resonance imaging or angiogram of the brain. An angiogram can show which blood vessels are narrowed.
Because other conditions can cause some of the same brain vessel abnormalities as CNS vasculitis, a brain biopsy is the only way to make certain of a diagnosis. A brain biopsy can distinguish between CNS vasculitis and other diseases that may have similar features.


How is central nervous system vasculitis treated?
CNS vasculitis is usually treated with steroids. High-dose steroids such as prednisone, in combination with cyclophosphamide (a medication that decreases the immune system’s response to autoimmune diseases), are generally used. In some cases, high-dose steroids alone are tried first; if that does not treat the disease, cyclophosphamide is added. Treatment must be continued for a prolonged period, sometimes for life.


If the patient has another illness (such as lupus) that is related to the vasculitis, then that illness also needs to be treated.
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