Maya - Defeats

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”

Tuesday, March 18, 2014

Warriors In Us

One of the things that I enjoy so much about doing the radio shows ( throughout the years is that I have met some incredible people who are survivors who have insurrmountable strength demonstrated through the journeys that they have taken - whether it had been physical and/or emotional and/or on some other levels of abuse and/or adversitites. Today, on the show, we will hear about Tiffany Howe, who has had Lymphedema since she was born. I can, personally, identify with some of the trials and tribulatons that she has had since I have also had Lymphedema (albeit only for 10 years and not since birth).

Lymphedema, as defined on "A condition in which excess fluid collects in tissue and causes swelling. Lymphedema may occur in the arm or leg after lymph vessels or lymph nodes in the underarm or groin are removed. It usually causes painless swelling."

It goes to further describe: "Lymphedema is swelling in one or more extremities that results from impaired flow of the lymphatic system.

The lymphatic system is a network of specialized vessels (lymph vessels) throughout the body whose purpose is to collect excess lymph fluid with proteins, lipids, and waste products from the tissues. This fluid is then carried to the lymph nodes, which filter waste products and contain infection-fighting cells called lymphocytes. The excess fluid in the lymph vessels is eventually returned to the bloodstream. When the lymph vessels are blocked or unable to carry lymph fluid away from the tissues, localized swelling (lymphedema) is the result.

Lymphedema most often affects a single arm or leg, but in uncommon situations both limbs are affected.

Primary lymphedema is the result of an anatomical abnormality of the lymph vessels and is a rare, inherited condition.
Secondary lymphedema results from an identifiable damage to or obstruction of normally-functioning lymph vessels and nodes.
Worldwide, lymphedema is most commonly caused by filariasis (a parasite infection), but in the U.S., lymphedema most commonly occurs in women who have had breast cancer surgery, particularly when followed by radiation treatment.
It has been estimated that worldwide, there are 140 to 250 million people affected by lymphedema."

This definition is good for basic knowledge, but isn't true in a lot of cases. For example, my lymphedema was caused 10 years ago when my knees hit the steering wheel in an auto accident. It can be quite dibilitating overall and discouraging as there is no known cure for lymphedema.

Tiffany Howe, though will be coming forward today to share with us her story, which she brieflly describes as:

"My name is Tiffany Howe and I was born with Primary Congenital Lymphedema (Milroy’s Disease). After 27 years of struggling with this ailment, I was given a choice of losing my left leg or undergoing the Charles Debulking procedure. The choice was difficult and very challenging to make. I chose the Charles Debulking procedure and could not have guessed the life-changing experiences which would result. Full recovery took a year and included me learning to walk again.

For the next five years, I used my training as a Registered Nurse to research and study any available information about my disease – general knowledge, management, and care of Lymphedema patients. Research ultimately led me to the conclusion that Lymphedema patients are in need of support for this currently incurable disease. Support includes education and advocacy. I represent Virginia as part of the Lymphedema Advocacy Group, which is a patient-centered group, raising awareness. Our mission is to get passage in Congress for the Lymphedema Treatment Act.

Lymphedema has caused many trials and tribulations in my life. However, I now understand that regardless of my condition or situation, my life is still beautiful ! One thing that motivates me is knowing that my testimony can help someone else triumph. Despite the negativity, depression, worries, tears, loneliness, and fears, I believe that I can keep moving in the right direction with the help of my family and friends near and far. Deborah Martin, who is a MLD therapist and my friend, has spent countless hours helping me maintain the health of my leg and by encouraging me to keep moving, not giving up on finding good care and compression garments. Cindy Anderson has assisted me in finding a garment which fits my leg shape which has resulted from the debulking procedure. My quality of life has improved so much by having a well-fitting garment which fits inside my custom shoes. As a result of having well-fitted garments, I am able to take my daughter to football games and see her cheerleading and take her to ballet practice every week. These are things that I couldn't do before! Gone are the days of slipping compression garments or bandages too bulky to fit in my shoes. I am Tiffany and I Keep Moving toward a better life!"

I hope that you will join us today as we discuss her story, as well as her advocacy journey with the Bill currently in legislation to help make a difference for all lymphedema patients.

To join our show today (10a CST/11a EST), simply click on this link: You may also click on that same link at any point in time after the show, as all shows are recorded and archived for listening by others on an ongoing basis. During the show, we will also have the live chat open for you to ask any questions at any point in time during the show as you are listening to it. Feel free to share this widely with anyone you know that is affected by Lymphedema and/or your legislators so that they too can hear the importance of this Bill being passed.

I am hoping that you, too, see how she demonstrates that strength and perseverence she has had throughout these years, while forging ahead; an example of a warrior that we can all learn from, no matter our challenges that lay before us. What are your thoughts? Do you have a warrior in you, working towards to a newer you?



  1. I just don´t Know what to say... (my docteur always told me operation NO)

    Thanks for sharing...your story, Tiffany Howe, exemple
    The best

    1. Linda, I believe the thing is that they still are saying "NO SURGERY" these days. There is just not enough information about it out there. Tiffany's case was a lot different. (1) She has had it all her life and has been mis-diagnosed with it for a large number of years. (2) She was faced with, at the time, that she was either going to have to lose her leg or having this procedure. Therefore, she chose what seemed to be the lesser of two evils -- having the surgery. As you heard, she still has a number of issues that have resulted from having the surgery as well.

    2. I'm sorry.. I misinterpreted your name being Linda because of the id name -- Manuela. My apologies.

    3. One of the most beautiful things about her story is her perseverance, tenacity, and strength that she has --- in spite of all the odds. Additionally, I love her spirit with extreme determination to help others in every way that she can -- being an RN, being a legislative advocate, being involved with the LEAP program there. :)

    4. I agree with you, Kathryn :) and as I told before. Tiffany is an exemple.
      I'm going to share her story (as we say in portuguese: "ela é uma força de vida" wich means, more or less : she is a will-power

    5. Oooh, I love that portuguese quote! She is strong and full of will power! May all those with struggles/challenges remember that quote! :)