REMINDER - 9th State of Georgia Lymphedema Education & Awareness Day

9th State of Georgia Lymphedema Education & Awareness Day

MARK YOUR CALENDERS!

Our conferences here in Georiga are absolutely fantastic and there is no charge. The only expenses you might have would be the lunch and/or lodging if you come from out of town.

Last year we had Dr. Kathleen Francis updating us on research. She was great...totally cool person too!!!! Here's the scoop on this years conference: 9th State Of Georgia Lymphedema Education & Awareness Day

Sponsored by

Lighthouse Lymphedema Network

Luncheon & Program

Saturday, October 28, 2006 9:00 a.m. - 3:00 p.m. at the Renaissance Waverly Hotel 2450 Galleria Parkway, NW - Atlanta, GA

Speaker: David N. Finegold, M.D.

Some topics to be discussed:

· The genetics of primary lymphedema
· Post-mastectomy secondary lymphedema
· The future of lymphatic research

Our sincere thanks to the following businesses for their financial support of this educational seminar.

Please stop by the tables and see the services and products provided by our supporters for the treatment of lymphedema and related conditions.

· A Woman's Place - Northside Hospital
· BSN-Jobst
· CircAid Medical Products
· Compass Healthcare, Inc.
· Compression Design
· Drapers Fitness & Rehab Consulting
· Gwinnett Medical Center
· Juzo · Medi, USA
· Peninsula Medical (The Reid Sleeve People)
· Sigvaris, Inc.
· Solaris, Inc. (Tribute/Swell Spots)

Be there or be square

NLN - Parents' Lymphedema Action Network

NLN - Parents' Lymphedema Action Network

Announcing

An incredible opportunity for parents of children with lymphedema to participate in live telephone conferences specifically designed to help our children with lymphedema.

We are very excited about this and encourage all our visitors who have children with LE to support and participate in this wonderful program.

For complete information, including how to register, forum schedules and how to participate please visit:

NLN - Parents Lymphedema Action Network

This first conference is coming up on October 6th, 2006:

Topic: Garments, bandages & alternative products

Guest Speaker: Guenter Klose, CI, CLT-LANA (bio)

Email Questions to: guenter@klosetraining.com (Subject: PLAN Forum Oct 06)

Conference Call: Wednesday, October 18, 2006 at 3:00 pm PST

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We Support - The National Lymphedema Network

A Swell Condition That’s Not So Swell

A Swell Condition That’s Not So Swell

written by Julia Auton

Controlling lymphedema

One of the greatest frustrations breast cancer patients have about treatment is getting the right information through every step of the process—and this includes after treatment ends. One area where myths and misinformation dwell is the subject of lymphedema. What is it? Who gets it? What can be done about it? And, is there a cure?

In our culture of mass media, you would think there would be ample information about this condition. But treatment for lymphedema only reached the U.S. fairly recently, within the last decade, after it was developed in Europe.

Common myths include:

· You can’t get it if you’re young.
· If you don’t develop the condition immediately after surgery, then it will never be a problem.
· Lymphedema will eventually go away on its own without treatment.

My main source of information—and misinformation--came from hearsay from others and whatever I could find on the Internet. Even healthcare professionals were not forthcoming about the risks and precautions. I was told I was “low risk” because I was young and in good shape from exercising regularly. I was advised to do whatever I could to prevent infection in my right arm (where I had 37 lymph nodes removed) by wearing gloves during yard work, and avoiding blood pressure screening and shots or blood work in that arm.

So, I go tra-la-la-ing into the future, unknowingly engaging in every behavior that put me at risk for developing lymphedema. One day after many hours of pulling weeds—with gloves—I notice my lower arm and hand were swollen, resembling a Cabbage Patch doll, a telltale sign of lympedema’s arrival.

To save you the frustration of separating fact from fiction, I talked with Carol Crochet, a physical therapist specializing in treating lymphedema at the Rehab Results Group at DeKalb Medical Center in Atlanta, GA. DeKalb was the second center in metro Atlanta to offer a treatment program in 1997.

The good news, she told me, is lymphedema can be treated. The bad news is there is no cure. Once you have this condition, it never goes away entirely. But, the sooner you seek treatment, the greater your chances are for getting--and keeping--it under control for the rest of your life.

What is it?

Lymphedema is any accumulation of fluid in the arm where you have undergone surgery and/or radiation therapy for breast cancer. Whether it’s a mild case or your arm is extremely enlarged, if there's swelling, you have lymphedema.

"This abnormal accumulation of high protein fluid is caused by the malfunctioning of lymphatic system, which can no longer effectively move lymph fluid throughout your body," Crochet explains.

Who gets it?

"Approximately 30% of breast cancer patients develop lymphedema," Crochet says. But, there are no known indicators at this point as to who develops it. You can have lymphedema, even if you--
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only had a few lymph nodes removed,
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are young,
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are not overweight and exercise regularly,
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didn’t develop it right after surgery—it can occur any time over your lifetime.

What causes it?

Any stress can bring on lymphedema, such as --
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Infection—due to burns, insect bites, cuts or injury,
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Heavy lifting,
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Temperature extremes (hot or cold),
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Drop in air pressure (such as during flights),
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Straining your arm due to carrying heavy shoulder bags or luggage, and overusing your arm during repetitive physical activity.

How can you reduce your risk?

Take care of your treated arm, Crochet emphasizes. This covers everything from avoiding needles in your "vulnerable" arm to not carrying a heavy purse over your shoulder. But, it also includes lesser-known behaviors – like, burning your arm when reaching into the oven, or experiencing hot temperatures from a sauna or whirlpool.

The key is proper skin care— since it's your protective layer—to prevent any opening, where bacteria can enter and cause infection through cuts, scrapes and burns. This means keeping your skin clean and moisturized daily.

Additional ways to keep lymphedema infection away include–
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wearing gloves during housework and yard work,
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not cutting your cuticles,
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using insect repellent to prevent bites,
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using an electric razor for shaving under your arms and wearing antiperspirants without aluminum.

Also, avoid stress on your "vulnerable" arm, which means taking frequent breaks when you're involved in intense, physical activity.

However, if the inevitable happens, and swelling occurs, seek treatment quickly with an occupational therapist (OT) or physical therapist (PT) who specializes in lymphedema.


How is it treated?

Treatment involves an evaluation, patient education and therapy.

"Patient compliance is critical for achieving optimal results with lymphedema treatment," says Crochet. " Patients must come in for treatment every day for two to four weeks--or longer--and treatment takes approximately one and a half hours. Then, patients must wear the compression bandages when not at the clinic.”

Treatment programs can take the form of complex lymphatic therapy (CLT), which is the Australian version, or complete decongestive therapy (CDT), which is the European protocol. Both programs consist of bandaging, exercise, manual lymphatic drainage (massage), skincare precautions, and instruction in a home program.

Once the swelling is reduced and you plateau, you’re ready for the maintenance phase. Managing your condition involves performing the exercises and self-massage at home, and wearing a compression sleeve.

"It’s recommended that you wear the compression sleeve all day, every day as part of your normal routine," says Crochet. "There are also nighttime garments, if lymphedema is harder to control. Women without lymphedema but who are at risk for developing it should also wear a compression sleeve when conducting any physical activity to prevent swelling, as well as during flights, since the drop in air pressure in the cabin can trigger swelling."

Also, note that the material the compression sleeves are made of are only guaranteed to be effective for six months and must be washed daily, so it’s suggested that patients buy two and alternate wearing them. (Note: Medicare and Medicaid don’t cover the cost of sleeves and only a limited number of private insurers do.)

Women suffering from lymphedema should also eat a healthy diet, manage their weight, and engage in regular cardio exercise, such as walking and swimming.

“Exercise causes your respiration rate to increase, so you breathe more deeply, and this stimulates your lymphatic system to move lymph fluid throughout your body,” Crochet explains.

With all the time and effort involved, treatment appears to be a daunting task. But, Crochet warns, over time, lymphedema that is not controlled through treatment can worsen—setting off more discomfort, disfigurement and pain—and become even more fibrotic, causing the tissue to feel harder. And, at least that is enough incentive for me to comply.

BreastCareSite

Hereditary lymphedema type I associated with VEGFR3 mutation: the first de novo case and atypical presentations.

Hereditary lymphedema type I associated with VEGFR3 mutation: the first de novo case and atypical presentations.

October 2006

Ghalamkarpour A,
Morlot S,
Raas-Rothschild A,
Utkus A,
Mulliken JB,
Boon LM,
Vikkula M.

Laboratory of Human Molecular Genetics, Christian de Duve Institute of Cellular Pathology, Universite catholique de Louvain, Brussels, Belgium.

Mutations in the vascular endothelial growth factor receptor 3 gene, VEGFR3/FLT4, have been identified in a subset of families with hereditary lymphedema type I or Milroy disease (MIM 153100). Individuals carrying a VEGFR3 mutation exhibit congenital edema of the lower limbs, usually bilaterally and below the knees, sometimes associated with cellulitis, prominent veins, papillomatosis, upturned toenails, and hydrocele.

In this study, we report the first de novo VEGFR3 mutation in a patient with sporadic congenital lymphedema. We also describe three other families with a VEGFR3 mutation. In each family, one individual had an atypical clinical presentation of hereditary lymphedema type I, whereas the others had the classical VEGFR3 mutation-caused phenotype. The atypical presentations included pre-natal pleural effusion, spontaneous resorption of lymphedema and elephantiasis. Three of the four identified mutations were novel. These data show that de novo VEGFR3 mutations may be present in patients without family history of congenital lymphedema. This has implications for follow-up care, as such individuals have nearly a 50% risk for occurrence of lymphedema in their children.

Our findings also indicate that although most patients with a VEGFR3 mutation have the well-defined phenotype for hereditary lymphedema type I, there are exceptions that should be considered in genetic counseling. Because VEGFR3 mutation can cause generalized lymphatic dysfunction and can thus result in hydrops fetalis, VEGFR3 screening should be added to the investigation of cases of hydrops fetalis of an unknown etiology.

PMID: 16965327 [PubMed - in process]

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Wide clinical spectrum in a family with hereditary lymphedema type I due to a novel missense mutation in VEGFR3.

August 2006

Spiegel R,
Ghalamkarpour A,
Daniel-Spiegel E,
Vikkula M,
A Shalev S.
Genetic Institute, Ha'Emek Medical Center, Afula, 18101, Israel.
Hereditary lymphedema type I (HL-I), also known as Milroy disease, is an autosomal dominant disorder characterized by typical phenotype of infantile onset lower-limb lymphedema accompanied by variable expression of recurrent episodes of cellulites, toenail changes, and papillomatosis. Mutations in the vascular endothelial growth factor receptor 3 (VEGFR3), also known as FLT4 gene, which encodes a lymphatic endothelial-specific tyrosine kinase receptor, have been identified as a genetic cause of HL-I. We report a large Muslim Arab family residing in northern Israel with 14 individuals presenting clinical features of HL-I. Genetic analysis revealed novel missense mutation E1106K in the tyrosine kinase domain II of VEGFR3 that cosegregates with the disorder in the family. Most affected individuals presented with bilateral congenital lower-limb lymphedema. Wide intrafamilial phenotypic variability included two asymptomatic individuals, a case of prenatal hydrothorax evolving to hydrops fetalis, and a late-onset complication, yet unreported, of chronic degenerative joint disease of the knees. This report broadens the known "classic" phenotype of HL-I.

PMID: 16924388 [PubMed - as supplied by publisher]

Exercise, Lymphedema, and the Limb at Risk

Exercise, Lymphedema, and the Limb at Risk

Bonnie B. Lasinski, MA, PT, CLT-LANA

How many clinicians are at a loss for words when they are asked about what kind of exercise is "good" for individuals with lymphedema? How many individuals living with lymphedema or a limb at risk for lymphedema have asked their healthcare professional for advice concerning exercise only to receive conflicting information? It is difficult to "recruit" presenters to provide workshops/discussions on exercise for both patients and professionals alike. Exercise and lymphedema - it is a controversial subject.

Twenty-four years ago, I was asked to do a presentation on exercise after mastectomy for a one day seminar sponsored by the American Cancer Society's Long Island Division, entitled "Living With Cancer". When I contacted the coordinator of the workshop, Diana Rulon, she informed me that she was not "interested in exercise after mastectomy - she was interested in exercise for lymphedema!"

You can imagine my shock and fear at that moment. I had no special training in lymphedema management, in fact, no one did. We were just beginning to hear strange tales of a treatment from Europe that seemed ridiculously mild for the severe swellings I had seen in my limited experience. But, I figured no problem. I'll just go to the medical library, research the articles, and develop my talk from there. Well, that was 1980 and there were no articles, except for a few abstracts of German and French studies. Now, I was really in trouble. Well, long story short, I was inspired by the dedication of Diana Rulon who tried to find help for other women like herself, who had long been ignored by their doctors and told to live with their problem. Thus began my journey in lymphedema management.

Trial by fire, you might say! We presented a very basic, common sense talk on lymphedema, trying to define it in simple terms (no small feat when the literature was so poor - the definition at that time was a 2 centimeter difference between forearms - as if that was the only place one could have lymphedema!). Next, Diana presented some practical suggestions for nutrition that she had found helpful to her and several other women she knew. Finally, I wrapped up the session with some very basic information on exercise progression and then opened the floor for questions. The response was overwhelming. The participants were so grateful that their problem was finally acknowledged, even on such a basic level.

Twenty-four years later, although the medical management of lymphedema has come a long way, thanks in great part by the advocacy of Saskia Thiadens and the NLN, there is still much work to do. Basic and advanced research on the effects of exercise as a lymphedema risk reduction modality must be explored. The basic criticism of the precautions about exercise contained in the 18 Steps to Prevention of Lymphedema and other risk reduction guidelines is that they are "anecdotal" at the present time, due to the lack of controlled double-blind studies to prove their efficacy. Some medical professionals have taken the position that the individual with a limb at risk (or with lymphedema) should go ahead and pursue whatever exercise/activity they wish and "see what happens". Unfortunately, lymphedema is a chronic condition, which, presently, has no cure. While it is true that not all individuals who have had lymph node disruption (surgical or radiological) will develop lymphedema, until physicians can better predict who is at greater risk for lymphedema, a prudent approach to exercise is advisable. In the case of individuals with primary lymphedema or established secondary lymphedema, working up to a level of exercise that promotes fitness while avoiding exacerbating the lymphedema is a good goal.

I'm sure that some of you may have been told in the past that you should not exercise if you have lymphedema, or that certain types of exercise are contraindicated if you have lymphedema. This is not the case. I would like to review some basic principles of anatomy and physiology and pathophysiology of lymphedema and how these relate to exercise and lymphedema. Lymphedema occurs when there is an imbalance between lymph transport capacity and lymph load. After any surgical disruption or radiation treatment to a lymph node region, a state of latent lymphedema occurs. That is to say that the lymph transport capacity is reduced but it is still greater or equal to the lymph load. Acute/chronic lymphedema develops when that balance is shifted and lymph load exceeds the impaired lymph transport capacity. In the case of Primary Lymphedema, where there is a malformation/malfunctioning of the lymphatic transport system that results in a reduced lymphatic transport capacity, lymph load often exceeds that transport capacity, and progressive lymphedema develops over time.

Our lymphatic system, in addition to filtering out waste products, helps our bodies maintain fluid balance so that we are neither dehydrated nor edematous. 90% of the water component of our blood that perfuses the capillary network and nourishes our cells returns to the heart via the venous system. The 10% that is left behind in the tissues along with the extracellular protein that filters out of the capillaries, can only return to the heart via the lymphatics. That 10% can amount to up to 2 liters a day. While 2 liters may not seem like much, it adds up day after day, if there is impairment in lymph drainage. In addition, the extracellular proteins can only return to the central circulation via the lymphatic vessels. The diameter of these molecules is too large to fit into the openings in the vein walls - the openings in the lymphatic vessel walls are large enough for these protein molecules to enter easily.

So lymphedema is not only a problem of excess water remaining in the tissues, but of excess protein that remains in the tissues as well. Unfortunately, the body always moves for a state of balance so it actually tends to pour more water into the tissues to "dilute" this protein concentration - thus a vicious cycle develops. This problem is compounded by the fact that the white blood cells called macrophages, which are part of our immune response, do not work properly in the lymphedematous fluid. This is why anyone with lymphedema is at increased risk for infection in his or her affected limb.

What does all this have to do with exercise?

A review of the acute and chronic effects of exercise is helpful to understand how the limb at risk or a lymphedematous limb might respond to various types of exercise. The acute responses to exercise include increases in heart rate, stroke volume, cardiac output, blood flow to active muscles, systolic blood pressure, arteriovenous oxygen difference, ventilation, oxygen uptake, and a decrease in blood pH and plasma volume. Chronic adaptations to exercise include biochemical changes in skeletal muscles, decreased resting heart rate, decrease in total body fat, blood lipids, and the density and strength of bone and connective tissue. During exercise, blood is redirected to the muscles. At rest, only 21% of the cardiac output goes to the muscles, compared with as much as 88% during exhaustive exercise. As the body heats up, an increasing amount of blood is directed to the skin, to conduct heat away from the body core.1 Remember that lymph transport has to be equal to or greater than lymph load. When you exercise, your muscles need extra blood to supply the oxygen needed for your muscles to do the work of the exercise. Extra blood flow means that extra water will remain in the extracellular spaces needing transport via the lymphatic system.

The question is how much is too much? That is very individual. It is important that any exercise program be gradually progressed to avoid sprain/strain. More importantly, a slow progression allows the individual to monitor their affected limb or limb at risk for any sensation of aching or fullness that could indicate an overwhelming of the lymphatic system.

Exercise can increase the uptake of fluid by the initial lymphatics and enhance the pumping of the collecting lymphatics. In addition, exercise mobilizes the joints and strengthens the muscles of the involved limb/limbs/trunk quadrant, thus decreasing the risk of strain/sprain.2 Exercise is best done with compression on the affected limb either from compression bandages or compression garments. The bandages provide a new "tight" skin for the muscles to contract against, assisting in pumping the lymph out of the extremity into the central circulation.

When lymphedema exists, the remaining lymph vessels that are functioning are working double time to try to carry the load. These vessels become over dilated (stretched) and eventually, their walls can overstretch and fail, causing a worsening of the swelling. Wearing compression bandages/garments provides support to the skin and to the lymphatic vessels directly under the skin, called the superficial lymphatic network. It is these vessels that help to carry the load when the larger vessels have been cut away from the lymph nodes or have been damaged due to trauma or chronic venous disease, or in the case of primary lymphedema, when there are too few large lymph collectors in a region due to improper vessel/node development during fetal growth.

Of course, certain types of exercise are considered higher risk than others. For example, high speed activities like tennis, bowling and racquetball, place more stress on the upper limb while jogging, stair-climbing machines, downhill skiing, water skiing, football, soccer place more stress on the lower extremities or have higher injury risk than other activities such as swimming, brisk walking, and cycling. That is not to say that someone with lymphedema of the leg should not jog for exercise, or that the person with lymphedema of the arm and hand should not play tennis or golf. It is also important to know whether an individual was skilled at a sport/activity prior to their developing lymphedema. A sport-specific exercise program can be developed for the individual to build strength, flexibility and endurance in the muscle groups most used in that sport/activity. Ultimately, the decision to "play" should be an individual one, but an informed one.

Many men and women with lymhedema or a limb at risk want to work out with weights. A slow progression of light weights can be done safely and can allow an individual to develop good strength and power in any muscle group. The important thing to consider is whether you feel good after the exercise and how your affected limb reacts after you exercise. You must also consider your level of daily activity and modify accordingly - if you have had a particularly difficult day and your affected limb is more swollen, you may choose to do a different activity i.e. swim instead of walk, or you may realize that the best activity for that day is to rest with your limb elevated. The importance of deep abdominal breathing exercise should not be overlooked. Deep breathing enhances the pumping in the thoracic duct (the major lymphatic vessel draining the lower body and the left upper trunk/arm/hand).

A recent series of case reports published in the Journal of Surgical Oncology3 challenges the theory that vigorous upper body exercise is contraindicated for individuals who have had axillary dissection during surgery for breast cancer. The study followed a group of 24 women for 9 months. These women were recruited to participate in a training program to prepare for competition in the World Championship Dragon Boat Festival in Vancouver, British Columbia. Dragon Boat racing involves strenuous repetitive upper body exercise. 18-20 women paddle 40-60 foot boats for a distance of 500-650 meters. Circumferential measurements were collected on 20 of the 24 participants (limbs were measured at 4 places) pre training, at the start of the racing, and 7 months after the races. According to the authors, only two women, who had pre-existing mild lymphedema, had increases in their upper arms (5/8 inch) and none of the other participants developed lymphedema.

One of the authors of the study, herself a breast cancer survivor participated in the program. The authors conclude that strenuous upper body exercise may not cause lymphedema or worsen a pre-existing lymphedema.

It is important to note that the participants in this study completed a two-month training program of stretching, strengthening, and aerobic exercises prior to engaging in the actual strenuous activity of Dragon Boat racing. Many individuals who undergo breast surgery/axillary dissection/radiation are not enrolled in supervised progressive exercise programs like the participants of this study. Providing structured, individualized exercise programs should be a goal of all centers that perform cancer surgeries. While I do not discourage individuals from participating in sports and exercise, I do caution them that they should consider themselves "athletes" in the "game" of life. As such, each individual should engage in a stretching/strengthening program to prepare them for full participation in whatever activity they choose.

References:

1. Nieman, David C. Exercise Testing and Prescription: A Health Related Approach, 4th ed. Mountain View, California, Mayfield Publishing Co., 1999: P, 190-205. 2. Casley-Smith, Judith R, Casley Smith, John R. Modern Treatment for Lymphoedema, 5th ed. Adelaide, Australia, The Lymphology Association of Australia, 1997: p. 188-189. 3. Harris, Susan R, Niesen-Vertommen, Sherri. Challenging the Myth of Exercise-Induced Lymphedema Following Breast Cancer: A Series of Case Reports. Journal of Surgical Oncology 2000; 74:94-99.

Lymphedema Therapy

Lymphedema Exposition - Margate, Florida - Nov 9, 2006

Lymphedema Exposition - Margate, Florida - Nov 9, 2006

Free Community Event

THURSDAY, NOVEMBER 9, 2006

NORTHWEST MEDICAL PARK
2960 STATE ROAD 7, SUITE 104
MARGATE, FL 33063

8:30 am – 4 pm

SPEAKERS – VENDORS – RAFFLES – REFRESHMENTS

8:30 – 8:50 a.m. Exhibits

8:55 a.m. Opening Remarks

9-9:30 a.m. Stasis Dermatitis and Related Disorders of the Lower Extremities - Brad P. Glick, DO, MPH

9:35 – 10:05 Venous Ulcers - Robert J. Snyder, DPM

10:10 – 10:40 Breast Cancer and Lymphedema, Sentinel Lymph Node and Malignant Melanoma - David Porudominsky, MD

10:40 – 11 Break/Exhibits

11 – 11:30 Breast Cancer and the Environment Sandra Blank, Executive Director, Florida Breast Cancer Resource Network

11:35 – 12:05 Lebed Method – Therapeutic Exercise and Movement for Upper and Lower Extremity Lymphedema Sherry Lebed Davis, President

12:05-1:30 Lunch/Exhibits 1:30 – 2 Post Mastectomy Pain Syndrome - Andrew J. Goldberg, MD

2:05 – 2:35 “Life in the Flash Lane” – Menopause - Tara A. Solomon, MD

2:40 – 3:15 Treatment for Lymphedema and other edemas Cathy Kleinman-Barnett, MOTR/L, CLT-LANA, LMT, CLM

3:15 Closing Remarks/Raffles

3:30 – 4 Exhibits

RSVP: 954-978-4180

Make a Place for Your Illness and Put It in Its Place

Make a Place for Your Illness and Put It in Its Place

by Pauline A. Salvucci, MA, Self Care Connection

"A place for everything, and everything in its place." That may be a fine idea if you're eyeing the clutter on the living room floor, or a pile or two of old magazines and catalogues collecting dust in a corner. But what has it got to do with chronic illness? A lot.

Chronic illness is never a welcomed guest in anyone's life. However, when it becomes a visitor in yours, in many cases, it's there to stay. How you cope with your illness will determine, in great part, how well you live your life. Of the three primary factors which measure your ability to cope: your attitude, the social context of your life, and the quality of resources available to you, your attitude becomes the foundation upon which the others build. Making a place in your life for your illness may sound like a strange thing to do, but it's a crucial step in learning how to cope with illness and putting it in its place. Here are some suggestions:

Acceptance and denial are normal steps toward making a place for illness

When you begin to accept your illness, you open yourself up to see what's on your plate. Then you can begin to interact with it and make a place for it. When you deny your illness, you close yourself off to yourself, and you shut down. Feeling both acceptance and denial are normal responses to chronic illness. Being sick makes you different from healthy people. And, if your illness isn't visible, you may deny it more than if it were. Accepting illness is a process. It doesn't happen all at once. Don't be harsh on yourself when you fluctuate between accepting your illness and denying it. Acceptance isn't something you do once and for all. Acceptance lives in the present moment. Little by little as you accept your illness, you make room for it in your life.

Adapting to change takes time and patience

Like an onion, you peel off one layer of change at a time. The changes you often are faced with will stretch and challenge your ability to adapt. You may have to let go of, or even say goodbye to some parts of your life, either for a time, or perhaps permanently. Grieve this loss. Perhaps create a ritual to say goodbye, but don't deny those parts of your life which you enjoyed and which were important to you. They are a very real part of your history and deserve your respect. Your life is different than it was before you became ill, but don't treat your past and the things you enjoyed as if they never existed. As you make the changes your illness requires, you can become more flexible and creative in adapting to change. An idea that may help you is to keep a journal of the changes you've already made and how you made them. This can serve as a reminder of your accomplishments, and as a guide for making other changes. As you develop a greater degree of flexibility in adapting to change, the easier change becomes.

Befriend your illness as a part of your life

Chronic illness is your daily companion You already know how it affects your body. Now get to know what you feel and think about it, and especially how you treat it. If you consider your illness an enemy to be crushed, or an unwelcomed guest which you refuse to tolerate, or even an interloper you must annihilate, how will you allow your illness to be what it is, a part of your life which you can learn to befriend? Do you remember what Lincoln said about a house being divided against itself unable to stand? If you're divided against yourself by refusing to knowyour illness, or by waging war against it, how will you come to befriend it? Consider giving your illness a name and talking with it. Speak from your heart and your passion. Write down everything you think and feel about it. Don't keep your thoughts running around in your mind creating havoc. Then, listen to what your illness says to you in return. If you find this difficult to do, don't be discouraged. It is difficult, but there are rewards. An uneasy alliance is better than none at all.

Do you feel as if you're losing yourself?

Do you feel as if your blue moods are turning into dark depression? Is inertia increasingly becoming more a part of your life? Do you do less for yourself on the days when you could be doing more? Do you isolate yourself from your loved ones and friends? If over a period of time, you are regularly experiencing these feelings and can't shake them, don't hesitate to find professional help. Ask your doctor to refer you to a therapist whose specialty is working with people with chronic illness. These therapists can help you to make your way through difficult times. Yes, it's important to talk with your friends and family, but talking with a professional can be very freeing. They are available to help you sort out your experiences and the many feelings and thoughts you have about yourself and your illness. This isn't the time to "tough it out", or attempt to dismiss your feelings with a mind over matter mentality. Allow yourself to get whatever help you need. It can make a real difference in your life.

How often during the course of a day do you talk about your illness or refer to it?

Do you feel it's taking more of your time and energy than you would like it to? That can happen, especially when you are initially diagnosed and you're learning about your illness and trying to figure out your relationship with it. If it becomes a habit, and you feel as if you're losing perspective, here's a way to regain your balance. Create "talk space". Choose a comfortable place in a room in your home and make time to talk about your illness with your partner and your family. Let them know what you're experiencing and thinking. This is a time for honest sharing, for you and for your loved ones. Allow this "talk space" to be the place and time where you discuss your illness. Keep the rest of your home an "illness free talk zone". This will allow you and your family to enjoy one another's company and conversation without reverting to the topic of illness.

Seeing with new eyes doesn't mean looking through rose colored glasses

When it comes to putting your illness in its place, you might try seeing with new eyes. When it takes you more time to do just about everything, when simple tasks frustrate you because they're not so simple to do anymore, when the familiar becomes foreign, when you can not do the many things you once loved doing, maybe seeing with new eyes can help. If you were an artist and can no longer paint, you can still go to museums or art galleries. If you can't do that, you can enjoy art on the Internet since it offers you access to the world's best museums, galleries and art exhibits. If you worked with your hands and can no longer use tools to do a job or hobby, teach someone else to do what you know how to do so well. Share your knowledge and lend your expertise. If you loved nature and the outdoors, but can no longer hike, drive along some of the scenic roadways and enjoy the beauty and majesty of nature. Find a way to keep what you have been passionate about in your life. It takes time, work, patience, spirit and heart to make a place for illness in your life. Seeing with new eyes is both a tribute to courage and the ability to put illness in its place.

Recommended Books:

Self-Care Now! 30 Tips to Help You Take Care of Yourself When Chronic Illness Turns Your Life Upside Down by Pauline Salvucci

Self-Care Now! 30 Ways to Overcome Obstacles That Prevent You From Taking Care of Yourself by Pauline Salvucci

Self-Care Now! 30 Tips to Help You Take Care of Yourself & Minimize Caregiver Burnout by Pauline Salvucci