Friday, February 12, 2010


I am starting this blog as a way to cope with my diagnosis of Lymphedema as well as to reach out to those affected by the condition or to those who know someone who is affected by the condition.

I have titled it "Typical Girl" because I have had a difficult time feeling like a normal twenty something girl. It is with hope that through self management, treatment, spreading the word about the condition and reaching out to those like me that I will feel like a typical girl once more.

I will have postings talking about what to expect with Lymphedema, emotional reactions, insurance, treatment, fashion and resources. Some days are good days and some have left me not wanting to leave my apartment but I will talk about it all and share others to comment and talk about their experiences as well.

I also want to focus on fashion quite a bit because I am not ready to live my life in sweatpants and sneakers! Self esteem is a huge factor in dealing with this condition and wearing well fitted clothes that accommodate the infected limb and make you feel attractive are important factors in maintaining a healthy self image.

Read on!

Feel free to leave comments and advice.


First Fashion Post!

So my fashionable wardrobe seriously declined as my leg became more swollen. I had to say goodbye to shorts, skirts, skinny jeans, my three inch heels...

The intensive period of therapy which consists of wearing the bandages for 23 hours a day caused some freak outs. I had to rummage through my clothes to find a baggy pair of jeans and shoes that fit my bandaged foot. I had some great old vans laying around which fit perfectly. I did, however, feel that I was staring at a 16 years old version of myself in the skater girl phase...

The intensive period only lasted three weeks and then I was back to my compression stockings during the day again. I knew during that time that I was going to have to work on my self esteem and focus not on my abnormalities but what I do have. The more I try to find clothing that suits my leg rather than having my leg fit into fashionable clothing trends, the better off I have been. To be honest, I think I have looked my best as of recent because I am conscious of the comfort of my leg and I have more confidence in my features that do not revolve around my leg.

I have started a system for deciding on my outfits. I am one of those uber anal list makers. I have a list for everything...So I decided I would make a list of possible clothing choices for my date with my boyfriend and drinks with friends after. I made two columns, one for if my leg is having a good day and one for a bad leg day. That way when I got home and couldn't get my skinny jeans on because my leg is too swollen, I would still have another outfit to throw on. This actually works with my self esteem issues because if I have a cute backup outfit that allows for my leg swelling, I don't give up and decide to hide in my apartment.

My best advice is to make yourself feel good about what you are wearing. Just because we have lymphedema doesn't mean we have to put a sign on that says freak. If your leg is swollen, opt for a cute top and wide trouser pants with flats.

More posts to come about possible fashion ideas.

Embracing the Inner Mummy: Information on Bandaging

This post will review the stages of intensive treatment. This is such an important part of getting better. I was seeing a physical therapist for two months who did not do any of the necessary treatment steps for Lymphedema. The result of her lack of knowledge about the condition cost me hundreds more on top of my already mounting medical bills, caused my leg to worsen to the point that walking was incredibly difficult and painful. You must educate yourself about the condition so that you know whether you are receiving the correct treatment. Verify their background also!

There are three layers of bandages:

Foam and or padding

The bandaging must be taught by an occupation or physical therapist because they will know the correct way to wrap your leg and teach you as well.

I had two amazing occupational therapists that wrapped my leg and taught me how to do it myself.

First, I put on the stockinette so that the short stretch bandages do not come in direct contact with my skin. Then I put on my foam padding in my problem areas (this will be a later post). Then I start at my foot with the smallest bandage and work my way up to my hip. I wear 5 to 6 short stretch bandages. I have to wrap my leg every single night and perform the manual lymph drainage massage. The entire process takes about 45 minutes to an hour and is and will always be a pain in the butt. The reward: your affected limb smaller and less painful. I sleep in this every single night.

The first several weeks of wearing the bandages to bed will be rough. Sleep will be scarce because it is heavy and hot and you can barely bend your leg. It becomes typical to you after a while and soon not an issue. Also, when you are starting to learn how to wrap, there will be the nights where you were a bit too overzealous during wrapping and wrapped your leg a bit too tight. You will wake up in the middle of the night and not be able to feel your foot. This is not good. Take it off immediately. I suggest trying to rewrap which is not fun at 3 in the morning when you have to get up in a few hours BUT it will help your leg so it is worth it.

In short: wrapping is obnoxious and tedious and time consuming but your leg (or arm) will get better because of it and will be less swollen. Stick with it, it will pay off.


I will post some pictures of my mummified leg shortly!

Helpful Resources

By far, the best resource I have found to date was this book:
Living Well with Lymphedema

Extremely Helpful Websites:

Places to buy compression stockings:

Foundations working toward making a difference:
The Lymphatic Research Foundation

What is Lymphedema?


What is lymphedema?

Lymphedema occurs when a clear fluid known as lymphatic fluid builds up in the soft tissues of your body, usually in an arm or leg. The lymphatic system consists of lymph vessels and lymph nodes that run through your body. Lymph vessels collect a fluid that is made up of protein, water, fats, and wastes from the cells of the body. Lymph vessels carry this fluid to your lymph nodes. Lymph nodes filter waste materials and foreign products, and then return the fluid to your blood. If your vessels or nodes become damaged or are missing, the lymph fluid cannot move freely through the system. The fluids can then build up and cause swelling, known as lymphedema, in the affected arms or legs.

There are two types of lymphedema:

• Inherited lymphedema, sometimes called primary lymphedema, in which you are born lacking lymph vessels and nodes. The swelling usually appears during your adolescence and affects your foot or calf. A rare form of primary lymphedema develops in infancy and is called Milroy’s disease; and

• Acquired lymphedema, sometimes called secondary lymphedema, in which an injury to your lymphatic system causes lymphedema. It is much more common than primary lymphedema.

Some people develop chronic lymphedema, which can last for the rest of their lives. Chronic lymphedema can be difficult to treat. Swollen limbs may become vulnerable to infection. Even a minor injury to the skin, such as a cut, scratch, insect bite, or even athlete’s foot between the toes can cause a severe infection, which physicians call lymphangitis. Lymphangitis affects the connective tissue under the skin. Repeated infections can cause scarring that makes the tissue vulnerable to more swelling and infection. This leads to the tissue hardening, called fibrosis, which is characteristic of advanced chronic lymphedema.
What are the symptoms?

If you have lymphedema, you may not develop symptoms immediately. Sometimes symptoms occur 15 or more years following an injury to your lymphatic system. When symptoms eventually occur, they can include:

• Aching, weakness, redness, heaviness, or tightness in one of your limbs;
• Less flexibility in your wrist or ankle; and
• Tight-fitting rings or shoes.

What causes lymphedema?

The most common causes of secondary lymphedema are surgery or radiation treatment for certain types of cancer, such as breast and testicular cancers. Other causes of lymphedema include surgery on the blood vessels in your limbs or other surgical procedures, like liposuction, as well as burns.

How is lymphedema treated?

If you are at risk for developing lymphedema, you can act to prevent it. Initially, if you have mild lymphedema, you can act to keep the condition from worsening. You can take the following precautions to prevent or minimize symptoms:
• Clean your affected limb regularly. Remember to dry it thoroughly and apply lotion;
• Wear gloves while gardening and cooking;
• If you shave the affected area, use an electric razor;
• Don't go barefoot;
• Do not cross your legs when you sit; and
• Do not carry a handbag with your affected arm.

In addition, if you are at risk for lymphedema, avoid having injections and blood pressure readings performed on your affected limb. You can also wear a special bracelet or necklace to notify medical personnel of your risk for lymphedema and the risk for complications, such as infection.

Physicians have not agreed about how to best treat chronic lymphedema. Some people have benefited from manual lymphatic drainage. This treatment uses massage to stimulate your weakened lymphatic system. Other treatment methods include special exercises that you can do while wearing compression stockings or bandages, and the use of external pumps to aid the movement of fluid through your body. A treatment that combines these treatments with lifestyle changes is called complex decongestive therapy.

Medication cannot cure lymphedema. However, your physician may prescribe medications to treat associated conditions. For example, antibiotics play an important role in combating infections that can worsen lymphedema.

Treating your lymphedema requires your participation. Because lymphedema can be very painful, you may benefit from individual counseling. You can also join support groups that provide practical advice as well as social and emotional support.

Source: Vascular Web