Trust The Voice Within

“Confidence.” – is something you create within yourself by believing in who YOU are.

Living with Lymphedema or any condition for that matter can be a constant challenge, but there are many rewarding aspects that lie within us that we are devaluing without even realizing it. How do we channel the focus more so on the rewards than the defeats you ask? Self-Trust.

The soul usually knows what to do to heal itself. The challenge is to silence the mind and the noise of the world so that you do not drown out your own inner voice. Self-Trust is that inner voice and it is the most important aspect for personal discovery and healing for any individual. Without Self-Trust your Self-Worth, Self-Esteem or Self-Confidence do not exist. You must believe that you were born with the integrity, strength and ability to conquer any challenge. Understanding that you will have set backs throughout your journey and that is okay because ultimately your illness or diagnosis does not define you. Your strength and courage does.

Never lose sight of trusting your greatness and continue pushing forward believing that you are worthy, capable and deserving of any goal you desire. Life is a journey and it can take you anywhere you choose to go. As long as you’re learning you’ll find all you’ll ever need to know. Allow yourself to see your obstacles as opportunities, tests as testimonies, and trials as triumphs and you will be victorious!

What lies before us and what lies behind us are small matters compared to what lies within us, and when you bring what is within out into the world, miracles happen.

-Henry David Thoreau

Living Beautiful with Lymphedema,

Amy

Using my lymphedema for good: A NEW information paper for patients at-risk

I was diagnosed with stage III breast cancer when I was 21 years old. Because I was so young and the tumor was large and fast growing, I was treated very aggressively. I had eight rounds of rough chemo, bilateral mastectomies, reconstruction, and radiation. A PET scan showed early on that I had two infected lymph nodes, one in my axilla (armpit) and one under my clavicle, so I was told that I would need a full lymph node dissection and an extra radiation field to my axilla.

Because of these factors, my chances for lymphedema were high and I was sent for lymphedema screening after surgery. Both of my arms were measured for baselines and I was taught about lymphedema. I was read what seemed like a long list of things I would never be able to do again and it crushed me. I remember sitting on the sofa at my parents’ house crying to my father about how terrible lymphedema sounded and how I never wanted it. My plans to get through radiation and move on with a normal life seemed to get further and further away.

I have often thought about how upsetting my initial lymphedema education session was, but was never sure what to do about it. When I talk to patients, I try to explain the reasons behind many of the risk reduction practices, and attempt to make it less terrifying for them. However, it wasn’t until this past September at the NLN conference that the idea finally came to me. I was sitting in a session about Risk Reduction that my good friend, Sarah Stolker, MSPT, CLT-LANA, was teaching and heard her explain that many of her patients react the same way. I realized that I wasn’t alone in this knew I needed to work on the delivery method.

The information needed to be presented in a positive manner! In a way that would encourage safe behaviors and highlight the uses of education and a good working relationship with your medical team. It took me a few tries to figure out the best approach for presenting the info, but I finally figured it out. I am proud to say that it received the stamp of approval from the NLN’s Medical Advisory Committee last week!

This is one of the projects that makes me grateful that I have lymphedema. If the new paper can make the knowledge of lymphedema easier for even just one patient, I will know I accomplished my goal. (Keep in mind though, these healthy habits are good for those with lymphedema as well!)

You can download it here along with the NLN’s other position papers.

I hope that you like it as much as I do!

Best,

Robin

Stronger Together – An open letter to the lymphedema community

One of the major reasons that we wanted to start this blog was to bring together primary and secondary lymphedema in the same place. We understand that there are some differences in our challenges, but we will never lose sight of the emotional side that connects us. Encouragement towards one another makes us stronger as people and friends. We grow from our struggles and thrive with the success of managing our lymphedema together. It is discouraging to hear people complain that cancer-related lymphedema gets too much attention in the media. We understand that it is frustrating for people with primary lymphedema to feel ignored. The reality is that primary lymphedema is much harder to diagnose. It is less likely to have an obvious cause and it can show up at different times in a person’s life. However, we believe that the major point is often missed: LYMPHEDEMA IS BEING TALKED ABOUT IN THE MEDIA! Most people have unfortunately had cancer touch their life in some way. New research and treatments are constantly coming out to try and cure this horrible disease and that makes it a hot topic in the media. Because of this, when cancer patients talk about lymphedema as a side effect of their treatments, the media tends to be more willing to cover it. Our focus as a lymphedema community needs to be on getting the message out there as much as possible, regardless of the outlet in which it is coming from. There is an old marketing term called the “rule of seven” that says that people need to hear a message (ie the word lymphedema) seven times before they will remember it or take an action about it. Seven times! If that is true, we need to focus on getting our message and the word lymphedema out there as much as possible. We want to live in a world where all health care professionals know the word lymphedema. Even if they’ve heard about it from cancer patients, they are still more likely to think of it when they see a formerly “mysterious” swollen limb. That can ultimately lead to more primary patients being diagnosed right? There are over 140 million of us living with lymphedema, yet very few of us bring awareness to it. We need to join our voices TOGETHER to give lymphedema the spotlight it deserves. It’s not until lymphedema is a household name and recognized by the masses that it will start to be diagnosed regularly. We strongly believe that no matter how the message gets out there, it’s important to get it out there! We need to stop being upset if someone mentions cancer-related and not primary lymphedema. Instead, use it as an opening to talk about primary lymphedema also. We, the lymphedema community, need to get our stories out there and make them heard. One way we’re trying to do it is through a campaign to get lymphedema on the Ellen DeGeneres show! If you want to get YOUR story out there, make a 15 second video about why YOU want to see lymphedema featured on her show. Post it to all of your social media outlets with #LymphedemaOnEllen. We will make sure to help share it as much as possible. TOGETHER we can give voice to lymphedema and create a global movement! Love and respect always, Robin and Amy

LymphSystem = Lifestyle of Health & Fitness

In case you were not aware of your Lymphatic systems job function, I would like to share with you just how big of a role it plays and why I encourage you to reflect on how a lifestyle of Health & Fitness can be very beneficial.  Your body contains 3x more Lymphatic fluid than blood and your Lymphatic system is composed of nodules, vessels, and glands which move toxins and waste away from cells, in turn replenishing them with good (I like to refer to my Lymphatic system as the “Cinderella” of my body).  These harsh toxins and waste living in our body could be from the foods we eat, the lack of supplements or even pollutants.  We all rely on our Lymphatic system more than we realize because unlike the blood which is circulated by the heart, the Lymphatic system relies on our physical activity to continue moving fluid along.  No movement = things get backed up and proper nutrition/supplements is always key in helping things digest properly too.

There are many recommendations of different types of nutrition remedies to help move along lymph fluid, but keep in mind that every “body” reacts differently and no 2 Lymphatic systems are the same.  You can start by speaking with your Lymphatic Therapist or Primary Doctor to ask them what they would recommend based off of your medical history and start by doing a process of elimination.  Take notes on foods that make you feel bloated, sluggish or fatigued when you consume.  Then journal about other foods that gave you more engergy, a clearer mindset, and leave you feeling satisfied to accomplish tasks that the rest of the day may bring!

Being that the Lymphatic system is like a car engine in our body that never shuts off, wouldn’t you want to not only give it the proper nutrition it needs, but also keep it fine tuned?  Don’t let your body break down, this is where your fitness is vital!  No need to go crazy and something is better than nothing, remember your body can stand almost anything, it is your mind that you have to convince.  Allow yourself to see the strength and beauty of which you are capable of and you will empower yourself and your Lymphatic system!

Living Strong and Healthy with Lymphedema,

Amy

Helpful suggestions to a more vibrant “you!”

 

One type of compression that will help move Lymph Fluid when performing light cardio, moderate or strength training.

Getting Creative with foam

While it’s true that there are standard “tools” for treating lymphedema, most patients and their lymphedema cases are different. We respond differently to the many types of garments, compression, and accessories (ie foam, inserts, devices). There are many different companies that make products for lymphedema and there is a good reason for this. Even within the same companies there are different fabric choices, methods of construction, compression classes, and tons of different shapes and sizes ranging from off the shelf to custom.

I have had lymphedema for about 9 years now and have tried the majority of the garments that are on the market. Some of them work well for me and some of them don’t seem to fit me or contain my swelling as well. This can change at any time too. There have been times in my life when I was wearing the same type of garment for years (making sure to have it checked before I reorder of course) and then all of the sudden the product didn’t seem to work for me anymore. That is unfortunately the nature of lymphedema, the longer the fluid sits in your tissues, the more it changes and you need to adapt with it.

I get that this can be frustrating and difficult for people, especially when they are new to lymphedema and are trying to figure out what works for them. Be patient and know that a little creativity can sometimes help.

I have small wrists as well as swelling in the dorsum (back) and palm of my hand. Both of these things can make bandaging difficult for me. I have played around with many different types of pads and finally figured out a way to make a pad that helps with both sides of my hand.

My personal hand foam recipe:

  • A roll of Velfoam / RFoam (I get this from http://www.lymphedemaproducts.com, but there are many places that sell it.)
  • A few sheets of blank paper
  • Scissors
  • A Sharpie or some other pointed tipped marker
  • A pen

foam_step1-4

  1. Start by folding a piece of paper in half, placing the paper with the fold toward your knuckles, and tracing the back of your hand. Make sure to leave a little bit of space between the fold and the top of your knuckles so that there is space for your fingers to go in between.
  2. Next, flip the paper and trace your palm on the other side. Make sure you draw holes for where your fingers will go. Cut the whole thing out including the finger holes and try it on. It might take you a few tries to get the right shape the first time you make it. (Be careful when trying the paper on so that you don’t get a paper cut!)
  3. Once you have a shape that seems to work, lay it on top of the foam and trace the shape with the Sharpie.
  4. Cut the shape out of the foam and try it on. You might have to adjust it a little, but it should fit your hand pretty well.

I typically hold the foam on with my second roll of finger bandages (the one that reinforces my knuckles) to make sure it stays in place. I like the Velfoam because it keeps its shape pretty well and doesn’t rip or fall apart as easily as gray foam. You can try it out of any foam that you prefer though!

There are many other ways that you can use foam to help with bandaging or garments, this is just an example that works for me. Talk with your CLT about your problem areas and see if you can come up with something together that will work for you.

Best,

Robin

An overview of lymphedema

Before I get into the more fun topics, I thought it is important to start at the beginning and go over the basics of lymphedema and its treatment.

Lymphedema [lim-fa-dee-mah] is an abnormal collection of high-protein fluid, lymphatic fluid or lymph, beneath the skin that causes swelling. Your lymphatic system runs through your body and is parallel to your venous system. However, unlike your veins, the lymphatic system is not a closed system and has no central pump (ie your heart). When this system does not work correctly, the fluid collects causing edema or swelling in the tissues called lymphedema.

When the fluid remains stagnant in the tissue, the body often responds with inflammation, which then causes fibrosis (scar tissue). That fibrosis can make it harder for swelling to decrease, and can put you at higher risk of infection or cellulitis.

The most widely used treatment for lymphedema is called complete decongestive therapy (CDT) which includes manual lymph drainage (MLD) massage, compression bandaging, compression garments, skin care, exercise, and self-care.

I will go into details about all of these things more in the future, but for now, I’d love to share the videos that I have been producing with National Lymphedema Network. You can watch the whole series of them on the NLN’s website or YouTube channel.

Robin

lymphedema: the lemonade of my life

Robin_NapaIn March 2005 I was diagnosed with Stage III breast cancer at the age of 21. Because I was young and my tumor was large and already spreading to my lymph nodes, I was treated very aggressively. I underwent chemotherapy, bilateral mastectomies, multiple reconstructive surgeries, and radiation. To get all the cancer cells, my doctors also removed a large cluster of lymph nodes from my armpit.

I sincerely hoped that once I was finished with radiation, I would be able to go back to a somewhat “normal” life. Unfortunately, shortly after I finished treatment I developed lymphedema in my right arm.

The diagnosis of lymphedema was much harder for me to accept than my cancer diagnosis. To me breast cancer seemed like it should have a start point and an end point. Lymphedema, however, serves as an everyday reminder of what I have been through. I have to wear a compression almost 24 hrs a day, do my self-care, and always be on the lookout for signs of infection. It was overwhelming, and all I wanted was to be young and carefree.

Despite the hardship, having lymphedema has become a blessing in disguise and has given meaning to my life. I find that helping others navigate their lymphedema treatment enables me to deal with my own reality.

When I first developed with lymphedema, garments were only available in nude, which honestly doesn’t match anyone’s skin tone. I called some of the big garment manufacturers and asked for black garments, but didn’t have any luck so I decided to make my own. I joined forces with another cancer patient and a friend from college and started a company called LympheDIVAs that offered upper extremity garments in bright colors and patterns. I was only with the company for about a year, but I knew my life would never be the same.

For the past five years I have been working for the National Lymphedema Network (NLN). I have the wonderful opportunity to spread awareness of lymphedema, help educate medical professionals, and directly talk to patients to help them find treatment and learn to thrive with their lymphedema.

I sometimes have the momentary “why me” thoughts and wish I could make it all go away. I think that those days are important for my healing process, but most of the time I am grateful that I have the opportunity to help others like me. If I can help someone else through a rough time, maybe it’s all worth it.

Robin