Managing life today can be difficult. Managing life with pain is even more challenging, but it is possible. There are ways to balance your life so that you can live the way you choose, rather than your illness dictating. The key is for you to become an active member of the treatment team. It is important to understand what your responsibilities are to ensure a near normal life style. Your health care team will do all they can to provide the necessary medical care, but you will be responsible for much of the day-to-day routine.
First you must clearly understand what your needs are. Personal needs can range from a balance between getting the proper rest and physical exercise to taking medications and reducing stress. While managing illness and pain are complex issues, the majority of the key components are simply common sense and good living skills. Things such as good nutrition, open communication with family and friends, asserting yourself so that your needs are met, and finding balance between activity and rest are all key components in successfully managing pain.
It is important to recognize your limitation to prevent becoming overly tired or risking increasing pain levels. Staying within your limits can enhance your ability to think clearly and concentrate on important tasks. Understanding personal needs will provide a means to develop a workable plan so that you can incorporate important tasks into your daily routine.
Journaling is an excellent way to ensure necessary tasks are completed while brining you one step closer to independence. Balancing daily activities with necessary rest periods is easier when you have a written overview of your endurance.
Your journal can also provide you with insight into daily stressors. Reducing stress is vital in the fight against pain. Muscles that are already painful will experience increased pain as your stress level increases and your muscles tighten. There are relaxation exercises and audiotapes available to teach ways to recognize stress and reduce tension.
Recognizing and understanding feelings are another important component to successful pain management. When you ignore feelings, they do not go away, but can show up as increased tension, feeling out-of-sorts, or even anger. Dealing with feelings as they occur can greatly reduce both stress levels and pain. Your journal, with its daily entries, can become your road map to wellness and provide you with a sense of empowerment.
Daily exercise should also become a routine activity. Simple stretches can strengthen muscles, improve circulation and improve energy levels. Ask your doctor about an exercise program designed to fit your ability. Invite your family to exercise with you or try exercising to some lively music.
When you plan your day, keep in mind your need to pace activities according to your ability for that particular day. A simple way to remember the importance of pacing is with the word PACE.
P is for prioritizing your tasks to ensure that the most important ones get done first.
A is for planning your actions to ensure the best result.
C is to remind you of your physical comfort. If a task creates increased pain levels, then perhaps you need to ask for help.
E is for energy. Energy levels are never the same from day to day.
You need to consider how much energy you have at the beginning of each day to ensure you are working and playing within your ability.
By combining PACE – Priorities, Actions, Comfort and Energy – with your personal commitment to a near-normal life, you can begin to feel like a person rather than a patient.
By Penny Cowan, Founder and Executive of the American Chronic Pain Association. Reprinted with permission from NewSLEtter, the Bay Area Lupus Foundation newsletter.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.
Tuesday, November 20, 2007
Monday, November 19, 2007
Looking Your Best with Lupus
It's difficult to be confident when you're self-conscious about the way you look. Many people with lupus experience changes in appearance due to the medications they take or the lupus itself, everything from weight gain to hair loss. The following suggestions are not intended to make you feel more self-conscious about yourself; they're just ideas to make you more comfortable with your appearance and boost your self esteem when lupus is wearing you down physically.
It's a Skin Thing
Malar (butterfly) rashes or stretch marks can make you feel pretty self-conscious. The malar rash, which appears in a lot of lupus patients, spreads across the cheeks and the bridge of the nose like a rosy butterfly. There are products out there that you can use to minimize the appearance of this rash. More than just makeup (and a little more pricey than most drugstore brands, too), the products are specifically designed to cover hard-to-hide skin problems. Look for Dermablend or ask a cosmetician to recommend some products. As for stretch marks, you can use these products on those too, but if you have too many to cover, stick to concealing clothes instead. There are anti-stretch creams on the market and eventually those red and purple marks will fade into a paler shade of white. If you're having trouble getting the makeup just right, book yourself a makeover – it might even be fun!
Rapunzel No More
Your hair's falling out! While this can be awful, there are ways to deal with it. First of all, be nicer to the hair you do have. Avoid any products that irritate your scalp or any products that may make you lose more hair, e.g., stick to coated elastic, not rubber, bands. . . on second thought, pony tails can be stressful to your hair. While brushing, be gentle. To cover up thinner hair, experiment with hats or scarves. If hair loss is severe, you can find great synthetic or real hair wigs and they're easy to take care of.
Wait, Now I'm Growing Hair in Other Places!
Strange, isn't it? The hair on your head falls out while hair elsewhere - say, your upper lip – grows like a weed. This is a side effect of certain medications. To get rid of the fuzzy stuff, get your hands on some hair removal products like creams, waxes, natural sugar or honey, bleach, electrolysis – all dedicated to making you fuzz free. If you're not a do-it-yourselfer, visit a salon; they're pros at this kind of thing.
Indulge Yourself
Don't forget the most important part of yourself to cultivate; your inner beauty, of course! All the makeup in the world won't help you if you don't believe in your inner beauty. Don't let lupus (or anything else) make you think otherwise.
Edited for clarity; reprinted from Work Out, the employment newsletter for people living with lupus and other chronic illnesses.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.
It's a Skin Thing
Malar (butterfly) rashes or stretch marks can make you feel pretty self-conscious. The malar rash, which appears in a lot of lupus patients, spreads across the cheeks and the bridge of the nose like a rosy butterfly. There are products out there that you can use to minimize the appearance of this rash. More than just makeup (and a little more pricey than most drugstore brands, too), the products are specifically designed to cover hard-to-hide skin problems. Look for Dermablend or ask a cosmetician to recommend some products. As for stretch marks, you can use these products on those too, but if you have too many to cover, stick to concealing clothes instead. There are anti-stretch creams on the market and eventually those red and purple marks will fade into a paler shade of white. If you're having trouble getting the makeup just right, book yourself a makeover – it might even be fun!
Rapunzel No More
Your hair's falling out! While this can be awful, there are ways to deal with it. First of all, be nicer to the hair you do have. Avoid any products that irritate your scalp or any products that may make you lose more hair, e.g., stick to coated elastic, not rubber, bands. . . on second thought, pony tails can be stressful to your hair. While brushing, be gentle. To cover up thinner hair, experiment with hats or scarves. If hair loss is severe, you can find great synthetic or real hair wigs and they're easy to take care of.
Wait, Now I'm Growing Hair in Other Places!
Strange, isn't it? The hair on your head falls out while hair elsewhere - say, your upper lip – grows like a weed. This is a side effect of certain medications. To get rid of the fuzzy stuff, get your hands on some hair removal products like creams, waxes, natural sugar or honey, bleach, electrolysis – all dedicated to making you fuzz free. If you're not a do-it-yourselfer, visit a salon; they're pros at this kind of thing.
Indulge Yourself
Don't forget the most important part of yourself to cultivate; your inner beauty, of course! All the makeup in the world won't help you if you don't believe in your inner beauty. Don't let lupus (or anything else) make you think otherwise.
Edited for clarity; reprinted from Work Out, the employment newsletter for people living with lupus and other chronic illnesses.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.
Young People Beware: Alcohol and Lupus Don't Mix
There's no way to soften the bad news about drinking alcohol. While anyone is at risk from alcohol's negative side-effects, people who take prescription medications (and also some over-the-counter-ones) put themselves at an even greater risk of suffering health troubles.
The problems occur because alcohol can change the way the body uses, or metabolizes, certain medications. Alcohol is absorbed through the intestinal tract and shuttled to the liver, where chemical "knives" called enzymes break it into smaller molecules. Trouble is, alcohol causes the body to make more of these enzymes, especially when someone drinks regularly (even so-called "social" amounts of alcohol). Some of these enzymes are the same "knives" that break down medications so the body can use them. In producing more enzymes, the liver metabolizes medications faster. The bottom line: medications are sent into the bloodstream much faster and to a larger extent than when you don't drink. This can be dangerous, intensifying both the positive and negative side-effects of medications.
It is a myth that you can avoid these alcohol medication side-effects by taking medications while you are not drinking: the liver is still in "over-drive," producing more of these enzymes for some time after you drink. Another myth: "You have to drink hard liquor to suffer dangerous consequences." Beer and wine are just as likely to cause problems.
Of the 50 most frequently proscribed drugs, more than half contain ingredients that react adversely with alcohol. Among the negative effects are seizures, headaches, nausea, vomiting, mental confusion and coma. Don't forget that medications that are available without a prescription can also react adversely with alcohol. People with lupus, for example, often take Tylenol to alleviate pain. Drinking any amount of alcohol can cause Tylenol to be toxic to the liver at much smaller doses. Alcohol mixed with aspirin can lead to bleeding in the stomach. If you are taking methotrexate or other immunosuppressive medications, drinking greatly increases the chance that you will suffer liver damage.
Young bodies demand good nutrition. Teenagers and young adults need relatively more protein and nutrients to support growth and development. In addition, anyone with a chronic disease like lupus needs even better nutrition to also fight the chronic disease. Alcohol interferes with good nutrition in a couple of ways. Alcohol causes the body to waste some nutrients, basically by burning them up at a faster rate. In addition, the body's first priority is to metabolize or use alcohol, rather than the type of calories a person (especially teenagers) needs to grow. Anyone with lupus should avoid alcohol, particularly when taking medications, or restrict their alcohol intake as much as possible.
By Kristine M. Napier, N.P.H., R.D., L.D.
Reprinted, with permission, from Lupus World, Patient Empowerment Through Information, a publication of the University of Massachusetts Medical School, Worcester, MA 01655. Vol.1, No.2. With special thanks to Henrietta Aldjem, Editor.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.
The problems occur because alcohol can change the way the body uses, or metabolizes, certain medications. Alcohol is absorbed through the intestinal tract and shuttled to the liver, where chemical "knives" called enzymes break it into smaller molecules. Trouble is, alcohol causes the body to make more of these enzymes, especially when someone drinks regularly (even so-called "social" amounts of alcohol). Some of these enzymes are the same "knives" that break down medications so the body can use them. In producing more enzymes, the liver metabolizes medications faster. The bottom line: medications are sent into the bloodstream much faster and to a larger extent than when you don't drink. This can be dangerous, intensifying both the positive and negative side-effects of medications.
It is a myth that you can avoid these alcohol medication side-effects by taking medications while you are not drinking: the liver is still in "over-drive," producing more of these enzymes for some time after you drink. Another myth: "You have to drink hard liquor to suffer dangerous consequences." Beer and wine are just as likely to cause problems.
Of the 50 most frequently proscribed drugs, more than half contain ingredients that react adversely with alcohol. Among the negative effects are seizures, headaches, nausea, vomiting, mental confusion and coma. Don't forget that medications that are available without a prescription can also react adversely with alcohol. People with lupus, for example, often take Tylenol to alleviate pain. Drinking any amount of alcohol can cause Tylenol to be toxic to the liver at much smaller doses. Alcohol mixed with aspirin can lead to bleeding in the stomach. If you are taking methotrexate or other immunosuppressive medications, drinking greatly increases the chance that you will suffer liver damage.
Young bodies demand good nutrition. Teenagers and young adults need relatively more protein and nutrients to support growth and development. In addition, anyone with a chronic disease like lupus needs even better nutrition to also fight the chronic disease. Alcohol interferes with good nutrition in a couple of ways. Alcohol causes the body to waste some nutrients, basically by burning them up at a faster rate. In addition, the body's first priority is to metabolize or use alcohol, rather than the type of calories a person (especially teenagers) needs to grow. Anyone with lupus should avoid alcohol, particularly when taking medications, or restrict their alcohol intake as much as possible.
By Kristine M. Napier, N.P.H., R.D., L.D.
Reprinted, with permission, from Lupus World, Patient Empowerment Through Information, a publication of the University of Massachusetts Medical School, Worcester, MA 01655. Vol.1, No.2. With special thanks to Henrietta Aldjem, Editor.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.
Subscribe to:
Posts (Atom)
