The Lupus Cooperative of New York, located in Brooklyn, Northern Manhattan, and the Bronx, is a program of the S.L.E. Lupus Foundation. The Cooperative publishes a newsletter, The Cooperative Corner, six times a year. Here are some excerpts from previous issues:

March/April 2008
Lupus and Intimacy

Even under normal circumstances it can be difficult to talk about sexuality and intimacy with a partner or spouse. Having an exhausting and painful chronic illness such as lupus makes it all the more challenging—yet important—to communicate.

From body image to sexual desire, energy, and tolerance to pain, illness can get in the way of many parts of a relationship. If you have lupus, take steps to protect and nurture this important part of your life and well being. Here are some strategies that have worked for others and that you might want to try:

• Talk. Start—and keep—a conversation going between yourself and your partner. Sometimes a simple “Can we talk about this…?” opener can set the stage for honest and open exchange. Be sure to let your partner know that you want a two-way conversation in which each of your hopes and needs is addressed.
• Start with the positive. In your conversation, begin by talking about times together that have felt positive and good—what’s special and feels particularly right about your physical connection. Then discuss what can get in the way of those positive exchanges.
• Send a signal. Feeling tired and sick, fear of worsening pain, being depressed or emotionally drained—all are common with lupus and can get in the way of wanting intimate contact. If you haven’t been interested for a while, at least talking about what would make it feel right may signal your partner that you want to keep this part of your relationship alive.
• Make a date. If you can, plan your intimate times for those parts of the day that you feel stronger and more rested. If you take lupus medicines that ease pain or stiffness, try timing when you take them for peak action at your date hour. Also consider taking a nap before sex, or having a warm bath or applying soothing heat to ease joint stiffness and muscle aches.
• Use props. Lupus hurts. Strategize ways to support your back, your neck, and your legs— all parts of you that might come under pressure or get turned or moved in such a way that might cause pain. If you often feel cold, take the time to make the room feel warm, use an electric blanket, or take a hot bath right beforehand.
• Keep hugging. Intimacy is about so much more than sex, of course. Keep your connections going by being physically close to each other, holding hands and getting in tune with each other’s bodies. Show your affection in a non-stressful, loving way to let your partner know that you’re still interested in being intimate. And an added boost: hugging and other physical contact has also been shown to be good for your health!

Finally, one of the greatest gifts that you can give to someone you care for is to also be good to yourself. Eat well, rest, and exercise when possible to stay strong. And if you think it might help, reach out to a social worker or therapist with your concerns. 

December/January 2008
The Risk for Diabetes: What You Need to Know

One of the chronic illnesses that has a tendency to develop along with lupus—which itself is very difficult to deal with—is Type 2 diabetes.

You are more at risk for diabetes if you are obese, have a diet high in fats and sugars, don’t get regular exercise, have a family history of diabetes, or are 45 or older.

Unfortunately for people with lupus, another risk factor for diabetes is taking the medicine prednisone, a powerful corticosteroid drug that quiets the overactive lupus immune system. Prednisone’s inflammation fighting and immune system-suppressing actions have saved the lives of many people with lupus.

But prednisone also has damaging, unwanted effects on the body. Diabetes can happen when prednisone—taken at certain dosages and over certain amounts of time—causes the liver to send out high levels of glucose (sugar) into the blood. Over time, the body becomes less sensitive to the hormone, insulin, which the body needs to break down sugar in the blood and convert it into energy for cells to use.

Without enough insulin, sugar builds up in the blood, starving cells of energy. High levels of sugar in the blood can eventually hurt the eyes, kidneys, nerves, and heart. Diabetes, like lupus, can not only make you very sick, it can also take your life.

Prevent and Protect
As with lupus, diabetes is for various reasons more common among African Americans, Latinos, Native Americans, and Asian Americans. Be aware of this possible double threat to your health. Ask your doctor about your specific chances of getting diabetes—and what you can do prevent it.

For example, you may help to protect yourself from diabetes by eating healthy foods, exercising, and keeping a healthy weight. These activities also help with lupus in general, of course. Also, have your blood sugar levels regularly checked.

Sometimes, diabetes disappears when the prednisone is stopped or the dose is lowered. If you do develop diabetes, be careful to take the diabetes medicines or insulin therapy to manage your blood sugar. When properly treated, even a person with diabetes and lupus has a good chance of living a long and fulfilling life.

What you can do to protect yourself

• Don't smoke
• Maintain a healthy weight
• Exercise
• Eat a low-fat diet
• Know your family history
• Talk to your doctor

August/September 2007
Breathe Easy: What to Do When Lupus Affects Your Lungs

Your lungs, which are buried deep inside your chest with your ribs serving as a protective shield around them, can become a target of lupus. When this happens, serious problems can develop—even life-threatening ones in some cases.

Signs of trouble may include one or more of the following. Let your doctor know if one happens to you! 

• shortness of breath—even if you’re just sitting still
• pain in the chest area that seems to happen for no reason
• pain in your lungs when you take a deep breath
• coughing when there’s nothing to bring up (dry cough)
• coughing that brings up blood
• wheezing - the need to breathe fast for no obvious reason

Don’t ignore these signs of trouble. And if breathing gets really difficult or the pain starts to get intense, don’t waste any time. Dial 911 or go to the emergency room.

Tests such as chest x-rays, lung scans, heart ultrasounds, and the draining of a tiny bit of fluid from the lung to examine under a microscope can be done to help figure out what is going on. 

For most people with lupus, the problem is that the disease, which causes inflammation throughout the body, also inflames the lining around the lungs. Called pleurisy, this inflammation can cause sharp, stabbing chest pain. It might even come and go over time.

Inflammation of the actual lung can also happen, and is called lupus pneumonitis. When fluid builds up between the lung and the lining of the chest, it is called pleural effusion. These complicated medical names have something in common—they change the way it feels for you to breathe normally.

People with lupus are also more likely than people without the disease to develop a serious and urgent problem in which a blood clot travels to the lungs. Typically, the clot develops in the leg, where it causes warmth, swelling, pain, and redness, and then travels through the bloodstream to the lung, where it can actually stop a person’s ability to breathe. This is called a pulmonary embolism, and it can happen quite quickly, and cause lasting damage.  

So at your next visit, talk to your doctor about your personal risk for lung problems and how to spot them, and steps that you can take to keep your lungs as healthy as possible, such as exercising so that you breathe deeply and keep your lungs strong.

One of the first questions a doctor may ask is whether you smoke—because studies show that smoking may not only increase the chances of getting lupus in the first place, but also make infections in the lungs (and elsewhere in the body) more likely to develop. Smoking can also lead to dangerous heart and kidney problems and slow down the body’s ability to heal itself.

Breathe easy – Many problems caused by lupus in your lungs can be controlled or stopped if you know the danger signals and act quickly. So get to know your body, tell your doctor about any signs or symptoms that you notice, and act quickly if you notice a change in what you feel when you breathe. 

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May/June 2007
Facing Lupus Fatigue

The fatigue of lupus can’t be ignored. It’s much more than just feeling tired. It can make getting out of bed every morning seem like climbing a mountain. Ordinary tasks, like cooking dinner or doing the laundry, can seem impossible.

Fatigue is a symptom that others can’t see, which means they may not understand how bad you feel. Even worse, you may feel like no matter how much rest you do get, the fatigue will never go away.

If you have this kind of fatigue, talk to your doctor to find out if there is an exact cause, and if it can be treated. What you eat, your exercise routine, and your ability to cope with stress are all things that can worsen—or reduce—fatigue.

With lupus, medical conditions such as chronic inflammation, anemia (a blood disorder), and certain medicines often make fatigue even worse.

Your nurse or doctor will suggest ways to better manage fatigue. And here are a few extra tips from us. Call us if you have any questions.

Get Rest
Sleep is crucial for a person with lupus. Aim for 10 hours a night, and see if you feel better. A 15-minute nap during the day can also help, but longer naps may make you feel sluggish when you wake up, and can make it harder to fall asleep at night.

Exercise!
It seems like the opposite would be true, but exercise that gets your muscles moving and makes you sweaty can actually lessen fatigue. Studies show that people with lupus who exercise often feel more energetic as well as more hopeful and happy about life. Stronger muscles and bones are an added benefit.

Work Can Work For You
If you are used to working long hours, or getting up early for work, you may need to change your schedule. Fatigue can be worse at the beginning and end of the day, so think about working part-time, or coming in later and leaving later in the day. If possible, mix mini-breaks in to your work day rather than taking one long lunch hour.

Easier at Home
Talk to your spouse, children, or roommate about sharing chores around the house in ways that split things fairly, but give you the jobs that don’t add to your fatigue.

Pace Yourself
At the start of each week, make a schedule to be sure you’ll have a balance of rest and activity. Each morning, go over what you have to do for the day. If you think you’ll be too tired, try to reschedule. It’s better to be rested and enjoy your time out, rather than over doing it and feeling worse.

De-Stress
Stress makes it even harder for your body to heal itself. Stress-relievers such as massage, yoga, and acupuncture can reduce fatigue in some people with lupus.

Reach Out
Feeling alone or depressed can make lupus fatigue even worse. Reach out to your friends or spouse. Studies have shown that people with lupus that communicate well with their spouse, and feel in control and good about themselves, are less likely to feel fatigued. If you’d like help in finding new ways to talk to your spouse or friends and family, call the Cooperatives. An outreach coordinator can help you in many ways.

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March/April 2007
Lupus and Your Kidneys

As you may know, having “systemic” lupus means that the disease can harm almost any organ or tissue in your system—from your heart, to your brain, joints, and skin. But certain parts of your body are more likely than others to get damaged, and your kidneys are among them.

In a third of people with lupus, the immune system attacks the kidneys and causes more problems than any other part of this chronic disease—probably because these bean-shaped organs are so important, even though you can’t see them or feel them working.

Your two kidneys are about the size of your fists and are found near the middle of your back. They work incredibly hard at keeping the balance of fluids in your body at just the right levels, taking out waste and extra water from your blood and sending these out of the body through urine. The kidneys also help to control hormone levels and the amount of pressure in your blood vessels.

If lupus attacks the kidneys and gets in the way of them doing these important tasks, harmful toxins can start to build up in the blood and make you very sick.   

Some people in this situation have to go on “kidney dialysis” to let a machine do the work that the kidneys can’t do. And in some cases, a kidney from another person—a kidney transplant—has to be put into the body to substitute for the one that stopped working.

But it’s much better to catch problems early on, before these complicated and expensive fixes are necessary. Some people actually have signs that something is wrong with their kidneys, such as needing to urinate much more (or less) than usual, or feeling unusually tired or itchy. They may lose their appetite, vomit a lot, develop pain in the lower back, have swelling in their hands or feet, or actually lose feeling in these areas. Tell your doctor right away if any of these things happen to you.

But because many people do not feel at all sick, even though their kidneys are being attacked, it’s important that everyone with lupus regularly have their kidneys checked through blood and urine tests. If a doctor detects a problem, she can do a small operation to take a tiny piece of the actual kidney to then look at it under a microscope. This is called a kidney biopsy. 

So whether you have lupus kidney problems or not, it’s a good idea to keep these workhorses as healthy as possible by eating very little salt (less than 3 grams of sodium a day), lowering stress levels in your life, and keeping blood pressure under control. With careful care, the kidney and other “systems” can usually keep working in people with lupus.

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January/February 2007
Your Doctor, Your Partner in Health

Lupus is a lifelong disease. It may get quiet and go into remission, but it doesn’t just go away for good. To deal with this uncertainty and all the health problems that can come up when you have lupus, it’s worth spending the time and effort to form as strong and positive a relationship as possible—a partnership—with the people who will be treating you along the way.

Here are some tips for improving your partnership with your doctor—rheumatologist, cardiologist, dermatologist—as you prepare for your next visit:

Get there on time
Making it to each appointment on time shows your doctor that you value his time and advice. It also gives you the time that you really need—and deserve!—to be checked out thoroughly and tell him about any concerns that you have.

Be informed
Learn as much about lupus on your own as possible. Websites like www.LupusNY.org offer up-to-date information to help you better understand the disease. Doing this also shows your doctor that you are interested in your health and can talk about advances in treatments and what they mean to you.

Communication is the key
Focus on speaking clearly, asking questions and really listening. Ask how best to contact the doctor between appointments. Should you call the office? Is it OK to send an email? And be open and honest. You should feel comfortable telling your doctor about any changes in your life, since so many day-to-day things, such as added stress or even lack of sleep or changing your diet, can increase your risk for having a flare.

Keep track
Between visits, keep track of how you feel and make a list of questions to ask at your next appointment. During your visit, take notes and be sure you understand prescription and dosage instructions. If you find it awkward to take notes or you feel like you miss things, ask if you can tape the visit—so that you can replay instructions and advice when you get home.

Family matters
Ask a family member or friend to go with you to your next appointment to take notes, ask questions or mention things that you might not think of on your own. And just as important: your doctor will get to meet the people in your support system.

Be a familiar face
Your doctor has a staff of nurses, assistants, and more to care for you at your appointment. Make the effort to say hello and develop a relationship. They are the ones who schedule the appointments, call in prescriptions, and generally keep things going. And your doctor will probably notice that you take the time to be extra respectful and courteous to his staff.

Get a second opinion
If you are unhappy with your doctor-patient relationship, tell your doctor. See if she has ideas on what you can do to make it work better. If things don’t improve, contact the Lupus Cooperative of New York for a referral to another doctor.

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November/December 2006:
Why Should You Care About Clinical Trials?

If you or someone you care about has lupus, you know how badly new drugs for lupus are needed. Researchers, doctors, drug companies, and others are working on this. To test whether they have identified a drug that is safe and will work, they run what is called a "clinical trial," in which people with lupus try it out.

Why take part in a clinical trial?
A person enrolled in a clinical trial usually gets several positive things out of the experience, such as expert care by the doctors and nurses who are helping to run the trial, and a chance to try out a treatment before it is widely available.

Many people who take part in a clinical trial also say that it makes them feel really good to give researchers a chance to learn so much. Without enough people in clinical trials, it's very unlikely that new drugs and better ways of preventing and caring for lupus will come about.

Who can participate in a clinical trial?
Very carefully written guidelines say who can participate. Depending on the trial's goal, there may be rules about such things as age, severity of lupus, treatment history, and the presence of other health conditions. The purpose of these rules is to let the researchers safely and efficiently answer the questions that the trial is designed to answer. Also, strict rules protect the health and privacy of participants.

Are there different types of clinical trials for lupus?
There are several, each with a different overall purpose.

• Treatment trials test new treatments or drug combinations.
• Prevention trials look for better ways to prevent flares or even stop lupus from developing in people who have never had it. All sorts of things—medicines, vitamins, vaccines, minerals, lifestyle changes—are tested in these kinds of trials.
• "Diagnostic" trials and "Screening" trials aim to find better tests for diagnosing or detecting lupus (or flares) before serious damage is done.
• Quality of Life trials search for ways to improve the comfort and quality of life for people with lupus.

What happens in a clinical trial?
This depends partly on what type of trial is being done. A treatment trial on a new drug is done in stages, for example, with studies for safety and effectiveness done in labs and animals before people are involved in any way. All treatment trials go through "Phases" that involve increasingly larger numbers of people.

What happens to a person in a clinical trial?
At the beginning of a trial, a team that includes doctors, nurses, and social workers check the person's health and give instructions on what is involved in participating.
During the trail and even after it ends, the team watches the participant carefully through many visits.

What risks are involved?
By law, the team must carefully explain all the possible known outcomes. The treatment may not work well, for example, or may cause unpleasant or even serious side effects. Involvement may also require many trips to the study site, hospital stays, or more treatments.

How can you find a clinical trial?

• Ask your doctor
• Call the university hospital in your area
• Visit the Foundation's website for an updated listing
• Check out listings online at www.clinicaltrials.gov or www.centerwatch.com

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September/October 2006:
Looking Out for Lupus Flares

One of the most frustrating and frightening things about lupus is how unpredictable it can be. Symptoms can come and go, and it's often hard to know when and how lupus will strike. When the disease gets worse and symptoms develop, it's called a flare.

Everyone with lupus has a different experience. No one—not even your doctor—can tell you what will happen. The good news is that there are many things you can control that may help to keep flares from happening.

Follow the Plan: It's important to stick to the prevention and treatment plan created just for you by your rheumatologist. Take medications regularly and carefully and talk to your doctor or pharmacist about which over-the-counter or prescription drugs to avoid because they could cause a flare.

Take Care of Your Self: Outside of the doctor's office and the hospital, you are in control. Get plenty of rest, eat well, don't smoke, and exercise—these are keys to being your healthiest self.

Relax: Stress is a major cause of flares, but having a chronic disease is itself stressful! So take time for yourself. Try de-stressing with yoga and deep breathing exercises. Be sure to not overdo it at work or around the house.

Stay Out of the Sun: Sunblock, hats and sunglasses are crucial! Keep your time under the sun brief, and plan outdoor activities for later in the day.

Note that flares can also be caused by: an infection, injury, surgery, pregnancy or the time right after delivery, suddenly stopping lupus medications, vaccinations, and allergic reactions to skin creams, hair dye and makeup.

Over time, you may get to know your own body so well that you'll know what causes a flare and sense when one is coming on. Some common warning signs are feeling more tired than usual, fever, increased pain, rash, upset stomach, headache, or dizziness. If you sense that something is wrong, call your doctor right away. He or she can often help control the seriousness of a flare.

Preventing flares also helps prevent damage to your body, keeping it strong and better able to fight the disease—which may well mean fewer flares in the future!

Just Ask The Cooperative!

Dear LCNY,
I haven't told my employer that I have lupus. I'm afraid that I may have a bad flare and they won't understand it when I need time off of work. What should I do?

LCNY Says:
It's a personal choice as to whether to tell your employer that you have lupus. One thing is for sure: you cannot be fired if you do tell. While some people choose to keep it a secret, others may find they need to be open and honest with their co-workers and employer about what they're going through.

If you decide to tell your supervisors about your lupus, be clear that you are not asking them for special treatment. Help them understand that you live with a difficult and uncertain disease and that you hope to have their support if it flares and gets worse.

The Cooperatives can help you educate an employer about lupus and give you information on your rights in the workplace.

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July/August 2006:
Bone Up On Osteoporosis in Lupus

Here's some news that may surprise you: all people with lupus—young, old, female, male—are at risk for thinning and easy-to-break bones, a condition called osteoporosis.

Most people think of osteoporosis as a problem for older women. But "secondary osteoporosis" can develop in people of all ages who take the lupus medication prednisone, a corticosteroid (steroid).

While steroids help to control the immune system, they also weaken bones by robbing bone cells of oxygen and preventing the body from absorbing bone-strengthening calcium. Taking steroids for as little as three to six months raises the risk for osteoporosis, and research shows that one in three people who take the drug for a year or more will eventually break a bone.

But having lupus alone, even without taking steroids, also increases the chances that bones will get fragile and break. With lupus, inflamed blood vessels can block blood flow to bone cells, weakening the bones. And the pain and fatigue of lupus can keep a person from walking and other activities that help keep bones strong.

Even in their teens and twenties, women with lupus need to be very aware of the threat to their bones. Half of women with lupus who break a bone are younger than age 50.

Post-menopausal women should talk to their doctors about drugs that can offset the side-effects of steroids and treat osteoporosis. Most drugs are not recommended for younger women because they could cause problems during a pregnancy; however, there are some options for at-risk men. Everyone should ask their doctor about bone density tests, which can spot weaknesses in bones before a break happens and help in prescribing treatments.

Steps to prevent osteoporosis:

• Eat foods high in calcium like yogurt, cheese and milk
• Take calcium and vitamin D supplements
• Increase weight-bearing exercise, like walking
• Avoid alcohol and stop smoking
• Lower your dose of steroids, if possible

Just Ask The Cooperative!

Dear LCNY,
What is the best exercise for people with lupus?

LCNY Says:
Lupus can make it feel impossible to be able to exercise. But too much time off your feet can cause stiffness and muscle weakness, as well as weight gain and many other problems. My answer? Get your feet wet.

Swimming and water aerobics are safe, low-impact exercises perfect for people who deal with muscle aches and pain. Warm water also helps increase blood flow and relieves stress on joints. Plus, it's easier to get your heart pumping in water than on land. The downside? Water activities do not strengthen your bones, so be sure to combine them with weight-bearing exercises like stair-climbing or dancing.

If you don't know how to swim, try water aerobics, which take place standing up in the shallow end of the pool using flotation devices. Join a class taught by a certified instructor at your local YMCA or recreation center with an indoor pool, which will shade you from the sun and keep the water at a nice warm temperature year-round.

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May/June 2006:
Can Lupus Affect My Brain?

YES. In some people, lupus can make it hard to think clearly or remember things well. It can even change a person's behavior. Because these "invisible" symptoms tend to come and go, it can be very hard to tell if they are caused by lupus or by other problems. Friends, family, and co-workers also may have a hard time understanding what is happening.

How Can I Tell?
It may surprise people to learn that lupus affects the brain. Talk to your doctor about the following signs and symptoms of brain involvement: headaches; dizziness; seizures; stroke; problems with memory; problems with vision; depression (deep sadness, hopelessness, loss of pleasure); mania; schizophrenia; and psychosis (delusions, paranoia, hallucinations).

In addition to a physical exam and doctor's consultation, multiple lab tests may be needed to figure out what is going on. Other possible causes of brain changes, such as infections, drugs and non-lupus disorders, need to be considered too.

Is It Common?
Half of people with lupus suffer from cognitive dysfunction. Signs of this are confusion, problems concentrating or remembering things, and trouble sharing thoughts.

One out of five people with lupus have headaches, dizziness, memory loss, stroke, or mood swings that result from changes in the brain or spinal cord. These people have central nervous system lupus.

Many people with lupus suffer from severe headaches.

Nearly 1 in 10 people with lupus develop blood clots as a result of the antiphospholipid syndrome (APS), which can lead to stroke. Other serious problems include seizures, coma, inflammation of the spinal cord or brain's blood vessels, and paralysis.

How Is It Treated and What Can I Do?
The effect lupus has on the brain can range from small to severely damaging. A doctor can recommend a combination of treatments that include anti-inflammatory and anti-malarial medicines, blood thinners, drugs to ease tiredness and depression, and counseling.

Often the symptoms of lupus in the brain cannot be seen or felt by others. This can be very frustrating both for you and for them. Let friends and family know how much emotional support and encouragement helps at these times.

Just Ask The Cooperative!

LCNY Says:
The term "brain fog" describes those times when you can't think clearly or don't even know where you are or what you are doing. It's a common problem for people with lupus, but there are tricks called memory aids that can keep you on task. You can probably come up with your own ways in addition to the following examples:

• Label drawers, cabinets and closets around your house to make it easier to find things once you've put them away.
• Place post-it-notes with reminders in places you'll be sure to see them, such as by your door and in your car.
• Organize and simplify your home and workspace and keep a schedule of events and appointments nearby.
• Set your watch's alarm clock for when you need to take your medications.
• Leave reminder messages for yourself on your cell phone's voice recorder or home answering machine.
• Finally, when you feel brain fog coming on, try to take deep breaths and relax—knowing that it has come and gone many times before.

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March/April 2006:
Steroids and Weight Gain

Why do people with lupus need to watch what they eat?

Many people with lupus take prednisone, a corticosteroid (steroid) that calms the body's immune system, which is overactive in lupus. This medicine is very powerful and has greatly helped millions of people with lupus. It reduces inflammation and lessens many of the pains of the disease, including muscle and joint pain and stiffness. But prednisone also comes with some bad side effects, such as intense hunger pangs and fluid retention that can make the face and other parts of the body look puffy.

Prednisone causes cravings that lead people to eat more than their body actually needs and gain weight. In addition, prednisone changes where body fat gets stored in the body—from the arms and legs to around the face, back of the neck, and the stomach. Prednisone is what causes the rounded "moon-face" appearance of many people with lupus.

Weight gain is often the most feared side effect of prednisone. Nearly everyone that takes it will have some, but the amount varies, and also depends upon what prednisone dosage is being taken.

Can diet changes help put a stop to other side effects of prednisone?

Simple changes to what a person eats can at least help lessen many of the side effects. Steroids can cause high blood pressure, high blood sugar, high cholesterol, and osteoporosis (frail bones). It can also make diabetes symptoms worse. A doctor or dietician can give you custom-made ways to change your diet.

What can I do to control my weight gain?

The first step is to make a healthy meal plan.

Here are some things to keep in mind:

• Plan meals ahead
• Limit serving size
• Drink lots of water
• Get plenty of calcium from low-fat milk, yogurt and cheese
• Eat smaller meals 3-5 times a day
• Avoid temptations

IMPORTANT: Prednisone must be taken exactly as prescribed by your doctor. If you stop taking your prescribed dose, you could be at risk for very serious health problems.

Just Ask The Cooperative!

Dear LCNY,

Between the side effects from medications and lupus flare-ups, my body has been through so much. Some days I look in the mirror and I don't even recognize myself. What can I do?

LCNY Says:
Weight gain, swelling, trips to the doctor—it's no surprise that lupus can make you feel unattractive. Fortunately, most of the physical changes are reversed during remission and/or when the medication dose is lowered.

But for many people, the process can cause lasting damage to their self-esteem. There are many ways to get your self-confidence back. Stop dwelling on your limitations. Exercise can help you feel good about your body, even though it may not be "perfect." Everyone should be able to do some level of exercise, based upon how well they feel.

Also, set aside time in your day to do what makes you feel good. It could be putting on makeup and doing your hair in the morning, meditating after work or taking a warm bath before bed. The main goal is to be happy and comfortable with yourself!

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January/February 2006:
What You Need to Know About Medicare Part D

Medicare Part D Starts January 1, 2006
If you get help paying for your medicines through Medicare or a combination of Medicaid and Medicare (dual-eligibles), your coverage will be through a different system—called Medicare Part D—starting on January 1, 2006.

Medicare Part D is still a government program, but prompts you to select one of numerous private prescription drug plans (PDP) to get drug coverage.

As a person with a chronic illness, you probably take many different medicines. Your goal is to pick the company that lists all (or most) that you take in its formulary (drug list), and sells them at a good price. You also want to make sure that the prescription drug plan you choose will distribute the drugs through a pharmacy that is convenient to you.

Medicare Part D is complex and confusing to many people. The S.L.E. Lupus Foundation and its programs can help you understand it and guide you through some important decisions you have to make.

Important Points
-Everyone on Medicare can get drug coverage. No one can be denied coverage for health reasons or income level. If you have Medicare, or both Medicare and Medicaid, drug coverage will be available through Medicare Part D as of January 1, 2006.

-The program is voluntary for those with Medicare only. You may have good drug coverage from another plan, for example. If you do not currently have drug coverage ("credible coverage") and you enroll in Part D after the deadline of May 15, 2006, you will be charged a higher monthly premium.

-Dual-eligibles are required to receive drug coverage through Medicare Part D (no longer Medicaid). They will be automatically enrolled in a PDP starting January 1, 2006. You can switch plans at any time.

-There are different Medicare Part D plans. To get coverage, you must enroll in one of the approved PDPs. The Lupus Cooperative can help you choose the right plan.

-It's important to compare plans. Each plan selects which drugs it will pay for (its formulary), which pharmacies it will work with (its network) and how much it will charge (either monthly or per prescription). Choose one that fits your needs.

-Some people are eligible for extra coverage. If you have limited income, you can apply for assistance through the Social Security Administration at www.ssa.gov or by calling 1-800-772-1213.

The End of Drug Discount Cards
Medicare-approved drug discount cards were offered as a transition step to help people with Medicare save money on prescription drugs until the prescription drug plans became available. You can use the card until May 15, 2006—or until you join a Medicare prescription drug plan (whichever occurs first).

Know Your Options
-Keep all letters and other communications that you receive from Medicare, Medicaid and drug companies.

-Make a list of all the drugs you take, how frequently you take them, the dose you take, and how much they cost (both for brand name and generic).

-Ask the pharmacist you currently use which drug coverage plans they will accept starting in January 2006.

Access plan information at www.medicare.gov, or by calling 1-800-633-4227.

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November/December 2005:
Caring for Someone with Lupus

Are you a caregiver for someone with lupus–a spouse, parent, child or friend? Because lupus is a lifelong battle full of ups and downs, with periods of health cut short by flare-ups, the uncertainty of the disease can affect your life just as much as it does the life of the person with lupus.

As a caregiver, there may be times when you need to make personal sacrifices, placing someone else's needs above your own. That said, you should always be aware of your own health needs as well–for mind and body. Follow these positive steps for coping with the challenges of lupus, so that you give the best care to your loved one–and yourself.

Learn about lupus: Information is a powerful tool. It can help you communicate better with the doctors. Learn as much as you can from trustworthy sources. While the internet is a great tool, always check your sources to make sure the information is accurate and up-to-date.

Ask for help: You can't do it all. If someone offers you help, be it a friend, family member or a support organization like the S.L.E. Lupus Foundation, take it!

Look to your community: There are places and people ready to help you. Community outreach centers, like the Lupus Cooperative of New York, can help in a number of ways, from crisis intervention, doctor referrals, and support groups to educational materials, entitlement assistance, and emergency grants.

Set limits: Every case is different, but it's important to know how much time you can give to the person you are caring for, and when you need to think about other people or organizations that can help out.

Enjoy life: Keep in touch with friends and stay involved with your own interests. If you don't have the time to meet up with friends, call or email them. Focus on life outside of the caregiver role.

Above all, try to appreciate the time you spend with the person you care for. Stay focused–find ways to remind yourself why you are doing it.

Just Ask The Cooperative!

Dear LCNY,

Since my wife was diagnosed with lupus, I have had a hard time dealing with the changes in our lives. How can I best be supportive of her while dealing with my own fears and doubts?

LCNY Says: It is hard to see someone you love sick, especially when you have no control over the course of their illness. Lupus can put stress on your marriage and family. Getting the wrong ideas about lupus (the person is just lazy or imagining symptoms) can lead to anger and rob the person with lupus of needed support.

The good news is that lupus can bring you closer if dealt with thoughtfully. Learn everything you can about lupus together. Doing this leads to shared understanding and open communication, with greater freedom to talk about feelings, hopes, fears, doubts, frustrations–and even guilt. Focus on the person, not the disease. Your support makes all the difference.

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September/October 2005:
Healthy Eating Tips for People with Lupus

Bad eating habits can make it harder for your body to fight lupus. Luckily, simple changes in what you eat can make a big difference in how you feel day to day and protect your body–especially your heart–from lupus damage. The first step to healthy eating: Cut back on the Bad and eat more of the Good.

The Bad

Fat: Fried foods, fast foods, and foods made with oil and butter are usually high in fat. Eating too much of these foods can increase your risk for heart attack, stroke and diabetes. Try baking or grilling foods. Think fresh foods, not fast foods.

Caffeine: Coffee, tea and soda almost always have caffeine, which can irritate your stomach and keep you awake. Cutting out caffeine gives your stomach an important rest, especially if you take lupus drugs that already bother your stomach, and can help you sleep better.

Salt: You'll need to cut back, especially if you have lupus kidney disease or high blood pressure.

Alcohol: Mixing it with drugs (even Tylenol) can be a danger to your health.

The Good

Fruits & Vegetables: These are great sources of vitamins, minerals and fiber. They should make up the majority of what you eat.

Calcium & Vitamin D: If you are taking corticosteroids to treat lupus, you are at risk for osteoporosis–a disease that weakens your bones. Low-fat yogurt, cheeses and milk are high in calcium and Vitamin D, which can make your bones stronger. Also, by drinking milk while taking certain medications, you can avoid upsetting your stomach.

Whole Grains & Wheat: Eat more wheat and whole grain breads and cereals that are high in fiber. This can prevent constipation and reduce your risk of heart disease.

Low-Fat Proteins: Fish, chicken and beans are better for you than fatty meats. Eat baked or grilled fish, like salmon and tuna that are rich in heart-healthy omega-3 oil.

Water: Drink at least 8 cups of water a day. Drinking plenty of water is good for your whole body, from your kidneys to your skin, and can help you to control hunger.

Just Ask The Cooperative!

Dear LCNY,

I was just diagnosed with lupus. What lifestyle changes do you recommend?

LCNY Says: Being sick can be hard work, but you can and should do things to make yourself feel better.

In addition to basic healthy habits–eating well, not smoking, staying active–try to stay out of the sun and conserve your energy.

Also, make lifestyle changes to reduce stress, which is believed to trigger lupus flares–making your condition worse. You may need to cut back on hours at work or get friends and family members to help ease the demands in your life. Try to be flexible. If you're tired, rest. If you're in pain, stop what you're doing. Know your limits. Lupus is not an easy disease, but it can be managed, and you can continue to live a full life.

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July/August 2005:
Coping with Depression

Feeling helpless and hopeless, having difficulty sleeping and concentrating–these are a few of the symptoms of depression, an illness that is common in people with lupus.

The struggle of living with lupus can bring on depression. It can also be a side effect of your medications or from lupus in the brain–talk to your doctor to be sure.

Depression affects moods and thoughts. It can change the way a person eats, sleeps, feels and thinks. It's not a sign of personal weakness, and it doesn't just go away by itself. Without treatment, depression can last months and even years.

What is the difference between depression and feeling unhappy? One difference is that sadness may come and go, but depression stays longer and can cause serious problems if it isn't treated.

Depression can show up in many ways: loss of self-esteem, difficulty enjoying things, frequent headaches, eating too much or too little, a lack of energy.

If you think you (or someone you know) suffers from depression, take action. Try a support group where there are others who understand what you're going through. In some cases, your doctor may suggest you see a psychiatrist who can give you medicine to fight your depression. Together, therapy and medication can make a big difference in how you feel.

How to cope with depression:

• Join a support group!
• Seek help from a doctor/therapist
• Exercise
• Eat well
• Stay involved in activities
• Let people know what you need
• Stay on schedule and finish tasks
• Quit smoking
• Find joy in life

Just Ask The Cooperative!

Dear LCNY,

I was recently diagnosed with lupus. How can I share what I am going through with my family?

LCNY Says: Get your family together to learn all you can about lupus. Knowledge leads to understanding. Your pain will affect your family members just as much as it affects you. Invite a family member to your next doctor's appointment. Encourage discussion about the disease and allow everyone to express their feelings. They may be as confused, upset, angry, discouraged or scared as you are–these are normal reactions that shouldn't be ignored.

One of the most important factors in managing a life with lupus is the support of your family. Sharing your feelings and experiences with each other is the key to taking on the challenges you will face together.

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May/June 2005 Issue:
Is it Lupus or Fibromyalgia, or Both?

Like lupus, the disorder called fibromyalgia or FM often involves muscle pain, joint pain and fatigue, and occurs mostly in young women of childbearing age. It is sometimes mistaken for lupus, but as many as one in four people with lupus could also have symptoms that resemble FM.

What are the symptoms of FM?
FM is generally linked with long-term sleep loss. People with FM may also have muscle pain and tenderness, stomach aches, headaches, and feelings of numbness and tingling in the hands and feet. Constant pain for more than three months and tenderness in many areas of the body, such as the neck, spine, shoulders and hips, usually lead to a diagnosis of FM.

How is it different from lupus?
FM does not cause inflammation, arthritis, skin rashes, or damage to tissues, organs and bones like lupus. Medications commonly used to treat lupus have little or no effect on the symptoms of FM.

Why do I need to know about FM?
People with lupus often suffer from the symptoms of FM or may be initially diagnosed as having FM. If you have FM, it is important to know that it is not rare, it is never life-threatening, and it is manageable. Between 3 million and 6 million people in the United States have the condition.

How is it treated?
The best treatment for FM is exercise. Even if you think you are too tired or in too much pain, you will probably feel much better once you are active. Exercises in the morning and afternoon will give you energy for the day and help you sleep better at night. Swimming, walking and cycling can strengthen muscles and reduce pain. Doctors may recommend a combination of physical therapy, exercise, relaxation, and medication to treat FM.

Just Ask The Cooperative!

Dear LCNY,

I just started a new treatment and I seem to have more symptoms than before. Are they from the medication or from my disease?

LCNY Says: For people being treated for fibromyalgia and lupus, it is difficult to know the difference between the symptoms of the disease and the side-effects of the medications. All drugs may have side effects and some of the side effects can be quite bothersome.

When you get a new prescription, ask the pharmacist or doctor for a list of potential side effects and drug interactions. Keep a list of all your medications with the dosage, and show it to your doctor at each visit. After starting the medication, don't be afraid to discuss every possible symptom you may have with your doctor and how often you have them. This is the best way to find out which symptoms are from the disease, and which are from the treatments.

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