Feeling Good About Yourself Despite Lymphedema

I have been remiss in updating this blog, but I will try to remedy that. I received a couple of emails recently asking about or referencing self-esteem and coping with lymphedema. It reminded me that the struggles I have are shared by other people and the best thing we can do is support each other and help each of us learn to take the best care of our bodies that we can, but most of all, be kind to ourselves! Here is an excerpt of an email I received recently:

. . . In denial for so long, I hid myself, covered my self, lied to myself, ignored the truth, never confided in no one, secretly tried to get help, refused to get help, disappeared in the spring and summer time (the time for shorts, skirts, and sandals), stayed away from church (dressing up with heels), sucked in relationships (insecure and hid my feet) till now where I am tired of tormenting myself and being prisoner to my own jail of depression.

I have come to the conclusion I must be who I am. I have hid myself for so long, how do I come out of the open without all of the confusion and questions that I know will take place from others? Most of all, how can I reclaim my femininity? How can I rebuild my self-esteem? How do I dress and be sexy too?

This is part of my response, but I want to hear from others about this issue.

I can surely relate to what you've written. For most of my life I didn't know I had lymphedema. I thought I just had "fat legs." I always felt like I wasn't as pretty as other girls. I thought if I exercised more I could improve them. It wasn't until I was a grown woman that a doctor finally told me I had what he called, "congenital edema." It was a relief to know that it wasn't something that was my fault, but he also told me there was nothing I could do about it. I believed what he said and lived for about 15 years with my legs slowly becoming worse and worse, but not doing anything because I didn't think there was anything that could be done.

It wasn't until my legs became extremely swollen that I finally realized that there must be SOMEONE who could help me. I searched online and I found a website written by Amy Williams. When I saw the photos of her legs I almost cried with relief to know that there were other people out there and they were having success treating their lymphedema. It opened up a new world of possibilities for me.

As far as accepting the fact that I will never have "pretty" legs. Well that's just hard. Somedays I'm stronger and I can say that it's okay. I'm still a great person, and I'm beautiful despite the fact that I look "different" than what our society's standards say beauty is. I think that we can tell ourselves how shallow it is to be concerned with outward appearances, but at times it's harder for our emotions to line up with what our head might know.

I am fortunate in that I have a husband and daughter that are very supportive of me and try to help me feel okay about myself when I feel self-conscious or depressed about my appearance. Right now I'm still wearing the bandage wrappings. I know that when I'm out in public, people do look and sometimes I joke with my daughter about my "fashion statement." I really hate not feeling like I can "dress up." I wear a dress to church, but I usually try to find long skirts that will cover my bandages and clogs that I can just slip my feet into. It's not my ideal, but for now, it's the best I can do.

Hopefully, I will eventually have my leg size reduced enough to wear compression hose. I look forward to that because I think that even though they may not look completely "beautiful" they will allow me to feel and dress more "normally."

One thing that helps me keep going when I feel down is thinking about how bad my legs were when I wasn't doing any treatment. My legs had gotten so swollen that they were literally bursting. I had wounds that just seeped fluid all day long - it was disgusting. I would also get infections in them and they would hurt. It was soooo hard to move - to walk- to lift my legs up to put my pants on, or pull them up onto the bed at night. Now, even with the bandages I can walk so much better! My daughter
just mentioned the other day that she noticed I can walk faster than I used to. When I think back to all that, I don't want to stop wearing the bandages. I feel strong enough to walk around the grocery store and think, "Hey, stare all you want because my other choice is to be unhealthy and miserable. I'm not going to let some puzzled looks or rude stares stop me from doing what I have to do to feel better."

Being in this situation has blessed me with humility and it's also given me a bit of wisdom. I think I used to be more judgmental about people - of course I didn't think so at the time - but now I have a real understanding about not jumping to conclusions about people because I don't know what's going on behind the scenes. I think lymphedema has made me a more compassionate and better person. I would liked to have learned these lessons without feeling self conscious in a dress or a bathing suit, but like you said, "we have to work with what we have."

I am honored that you wrote to me, I don't know if anything I've said will help you except maybe to let you know that you aren't alone. I hope you can find some good people to surround yourself with - people that will support you and encourage you when you need it. I think with my husband, I'm the one who thinks about it and he doesn't. I worry about it for nothing!

When you find a good physical therapist who can teach you how to wrap your legs to reduce the swelling, or if you are able to get fitted for compression hose, you will start to feel that you have some control over your body and that will give you some confidence and acceptance. One thing I've realized is how much time I've spent hating my body - what good did that do me? I let myself miss out on things because I thought I didn't "look" right! What a bunch of garbage! I want to live life and not hide myself away. I wouldn't think that a person in a wheelchair should stay at home, I wouldn't think that a person with a deformity shouldn't go swimming because they didn't look "pretty" in a bathing suit, so why to I think those things about myself? I'm probably harder on myself than anyone else is! Sure, there are still times when I'm tired and I just don't want to deal with it - but that's normal - we can't be well-adjusted superpeople all the time! We need to cut ourselves some slack and be kinder to ourselves!

I also think it's practice. At first when I went out in public with my legs bandaged I was so insecure. I felt like EVERYONE was staring at me. Then after I'd been doing it awhile, I was able to relax a bit and realize that most people are concerned with their own lives. They don't care what I'm doing or wearing. They might shoot me a passing glance just like they look at anyone they pass. I've never had anyone say anything mean (to my face at least)! And if people are going to be jerks, well, we can't control that. There will always be jerks, no matter how beautiful or "perfect" you are!

The most important thing is to find lymphedema therapists in your area. Oftentimes there are also lymphedema support groups where you can meet people who share your difficulties and can support and encourage you. If you need further help finding a therapist, I recommend the Mayo Clinc. That is where I finally went to get treatment and they were SO helpful! I don't live near there, so we did have to travel and it was an expense, but it was worth it. If you can't do that, I know there will be Lymphedema Therapists somewhere near you. Getting treatment is so important. I wish I had gotten treatment 15 years ago - the sooner the better!

I hope I don't make it sound easy because it's not, and I am not immune to being reduced to tears when I try on a piece of clothes, or I just get tired of having to wear bandages 24-7. It's not that we "get used to it" we just have to "keep on keeping on!" So, do you have any words of wisdom? Any encouraging advice or any practical tips! We all need to hear them! Please leave a comment and share with the rest of us!

Protein-Rich Fluid

If you find the term"protein rich fluid" confusing, here's some information that will help clear this matter up:

Lymphedema: Protein-Rich Lymph Fluid and the Roll of Dietary Protein

Since the fluid associated with lymphedema is protein-rich a question that often arises is, “Should I stop eating protein so there won’t be protein in this fluid?” The answer to this question is, “No! Do not stop eating protein. It won’t solve your problem because proteins are essential nutrients.”

Dietary proteins are present in the foods we eat and are important to good health because:

· Proteins are the building blocks of the body.

· Proteins are the only nutrients that can repair worn-out tissue and build new ones.

· Proteins are used by the body in manufacturing hormones.

· Proteins have a role in building antibodies to fight infections.

· Proteins aid the blood in transporting oxygen and nutrients.

· Proteins are essential to the clotting of blood.

When There is a Shortage of Dietary Proteins

The goal for each individual should be to eat the appropriate amount of dietary protein to meet nutritional needs. This protein should come from a variety of sources, not only meat, and include only a minimum amount of fat.

When there are not enough dietary proteins available to meet the daily needs of the body, proteins are taken from the tissues and muscles to maintain the proper protein level of the blood. A severe shortage of dietary proteins will weaken connective tissues and causes them to swell. This is known as hunger edema and it can be seen in the swollen bellies of starving children.

Seriously restricting the intake of dietary protein in an effort to control the swelling of lymphedema does not help. It has just the opposite effect: It increases the amount of swelling that is present. It also weakens the muscles and other tissues.

Sonja M. Maul PT, CLT-LANA

National Board Certified Lymphedema Therapist

Lymphadema and Nutrition

Another great post

There is no special diet that will prevent or control lymphedema; however, good nutrition promotes good health and this helps the body manage with the stresses related to lymphedema. The main recommendations are eat a low sodium diet and keep hydrated.

Eating a Balanced Diet

Eating a well-balanced diet that includes a variety of fruits and vegetables is recommended for maintaining good general health. It also aids the body in coping with the added stress caused by lymphedema.

High salt foods, which encourage the body to retain fluids, are not part of a recommended healthy diet. High sodium foods cause the body to retain fluid in general, and will make the lymphedema swelling worse.

Staying Hydrated

The term hydrated describes the state of having adequate fluids in the body. Maintaining this state helps the body remove impurities from the blood and this is important to good health.

Drinking plenty of fluids, particularly water, is essential to maintaining this balance within the body. Cutting back on fluid intake in an effort to reduce the swelling of lymphedema doesn’t work! Instead of the desired effect, the protein-rich lymph of lymphedema attracts more fluid from the other parts of the body. This can cause increased swelling in the affected area.

Drinking eight 8-ounce glasses of water a day is recommended to maintain good health; however this need increases in hot weather, or in very dry conditions, when the body looses fluids more rapidly.

Being well hydrated, by drinking plenty of water, is particularly important after an MLD or pump treatment because it is necessary to flush out the impurities that were moved during treatment.

Caffeine, which is a mild diuretic, reduces the level of body fluids by encouraging the kidneys to excrete more urine. For this reason caffeine containing substances (coffee, tea, chocolate and many soft drinks) should be consumed only in moderation.

Alcohol also has a diuretic effect that stimulates the kidneys to excrete more water and thereby increasing dehydration.

Sonja M. Maul PT, CLT-LANA

National Board Certified Lymphedema Therapist

Basic Lymphadema Care Tips

Here's a great article about a couple basic things you can do to help with your lymphadema.

The first time I see a patient is for the evaluation. At the end of the evaluation I give my patients a packet of information to take home and read, instruct them in the Anatomy and Physiology of the Lymph System, and give them two things to get a head start on before we initiate our treatments. These two things are:

1. Any time you wash, dry, or lotion the swollen arm/leg, always rub up towards the body/heart. What we generally do is rub up and down. The lymph system is very close to the surface and the normal pressure we use to do these every day activities of washing, drying and putting on lotion is enough to stimulate that lymph system, so move the direction we want the fluid to go.

2. Deep Abdominal Breathing: The last tube of the Lymphatic system goes up through the chest passing through the Diaphragm. As we breathe the Diaphragm moves up and down massaging the lymph fluid up and into the Blood Circulatory System. Thus, by doing Deep Abdominal Breathing it creates a “wicking” effect, drawing the lymph fluid from the limbs and body.

• Deep Abdominal Breathing: Place one hand on your chest, the other hand on your stomach just below the ribs. Breath in slowly through your nose – your chest should stay still while your stomach expands out. Then blow the air out through your mouth as if blowing out 50 birthday candles – your stomach should pull in. Your exhale should be twice as long as your inhale. Do 10 of these breaths as often as you can recall throughout the day. (If you start to feel light headed stop and breath normal. To not get light headed, pause for 2 seconds at the end of each inhale and each exhale.)

With these two activities I often see patients return to start treatment with some decrease in their swelling.

Sonja M. Maul PT, CLT-LANA

National Board Certified Lymphedema Therapist

2008 Horizon of Hope

Longaberger Horizon of Hope to Raise Money for American Cancer Society Breast Cancer Initiatives

Horizon of Hope Products Available at 20 Percent Off for Limited Time

NEWARK, Ohio--The Longaberger Company is kicking off its 2008 Horizon of Hope campaign with a special offer that will enable customers to buy Horizon of Hope products at a 20 percent discount while also supporting American Cancer Society breast cancer research and education initiatives.

The campaign features a Horizon of Hope Basket and other products that Longaberger designs exclusively for the fundraising effort. Proceeds ($2 from each Horizon of Hope Basket, accessory set or set of travel mugs) go to the American Cancer Society.

The campaign is from July 1 through August 31, with the discount on Horizon of Hope products available from July 1 through July 16.

“It is our hope that we not only spur more awareness of this program that is bringing results in the fight against breast cancer, but that this promotional offer also acts as a catalyst to raise more money for the American Cancer Society,” said Julie Moorehead, Longaberger’s national executive director of sales.

Longaberger products can be purchased through independent Home Consultants nationwide or at www.longaberger.com. Since Horizon of Hope’s inception in 1995, Longaberger, its Home Consultants and the American Cancer Society have raised approximately $13 million and reached an estimated 19 million women with potentially life-saving information.

“Our company and our Home Consultants are passionate about Horizon of Hope because we’ve seen first-hand how we are together making a difference,” Moorehead said. “We’re proud to support the American Cancer Society.”

Horizon of Hope supports American Cancer Society programs aimed at improving the quality of and access to mammography services, breast imaging quality standards, the quality of clinical breast examinations, and the quality of life for young survivors and women with breast cancer recurrence. It also supports research into lymphedema, a debilitating swelling of the arms that can be a side effect of breast cancer treatment. To learn more, visit www.HorizonOfHope.com.

Founded in 1973, The Longaberger Company is America’s premier maker of handcrafted baskets and offers a variety of home and lifestyle products, including pottery, wrought iron and fabric accessories. There are approximately 45,000 independent Home Consultants in all U.S. states who sell Longaberger products directly to customers.

Contacts

The Longaberger Company
Tom Matthews, 740-322-5157
tom.matthews@longaberger.com

The first time I see a patient is for the evaluation. At the end of the evaluation I give my patients a packet of information to take home and read, instruct them in the Anatomy and Physiology of the Lymph System, and give them two things to get a head start on before we initiate our treatments. These two things are:

1. Any time you wash, dry, or lotion the swollen arm/leg, always rub up towards the body/heart. What we generally do is rub up and down. The lymph system is very close to the surface and the normal pressure we use to do these every day activities of washing, drying and putting on lotion is enough to stimulate that lymph system, so move the direction we want the fluid to go.

2. Deep Abdominal Breathing: The last tube of the Lymphatic system goes up through the chest passing through the Diaphragm. As we breathe the Diaphragm moves up and down massaging the lymph fluid up and into the Blood Circulatory System. Thus, by doing Deep Abdominal Breathing it creates a “wicking” effect, drawing the lymph fluid from the limbs and body.
• Deep Abdominal Breathing: Place one hand on your chest, the other hand on your stomach just below the ribs. Breath in slowly through your nose – your chest should stay still while your stomach expands out. Then blow the air out through your mouth as if blowing out 50 birthday candles – your stomach should pull in. Your exhale should be twice as long as your inhale. Do 10 of these breaths as often as you can recall throughout the day. (If you start to feel light headed stop and breath normal. To not get light headed, pause for 2 seconds at the end of each inhale and each exhale.)

With these two activities I often see patients return to start treatment with some decrease in their swelling.

Sonja M. Maul PT, CLT-LANA

National Board Certified Lymphedema Therapist

Healthy Skin Maintainance

Another Great Article:

Maintaining healthy skin is essential for those with lymphedema because intact skin, with no scrapes or cuts, prevents bacteria from entering and causing infection.

The swelling of lymphedema stretches the skin and disrupts the skin’s basic protective mechanisms. Also, as lymphedema increases in severity the skin loses its elasticity, becomes thicker and scaly, and is increasingly at risk.

Avoid Smoking

Smoking causes narrowing of the blood vessels in the outermost layers of skin. This decreases blood flow, which depletes the skin of oxygen and nutrients (such as vitamin A) that are important to skin health.

These factors increase damage to the elastic fibers (elastin) and collagen, which give your skin strength and elasticity. When skin is already challenged by the damage of lymphedema, these additional stresses make the condition worse.

Sonja M. Maul PT, CLT-LANA

National Board Certified Lymphedema Therapist