Traveling with Lymphedema

I know that traveling with lymphedema is a big concern for many people. There has been a lot of discussion over the years about the use of compression and the “dangers” of flying. It saddens me when I speak with people who are afraid of traveling because of their lymphedema.

I am a strong believer that I won’t let anything get in the way of me living my life, especially my lymphedema. I would never want to miss out on the experiences I get from traveling. Traveling with lymphedema is very doable, you just need to do a little extra planning and be aware of situations that might cause you extra stress. As Amy said in her last post, stay in control and don’t sweat the small things!

Here are some of my travel tips:

  1. Compression: Since I have lymphedema and wear compression all of the time anyway, I know that I need to wear compression during after my flight. Talk to your CLT before you fly for the first time to make a plan that works for you!
    • I typically wear my daytime garments (sleeve and glove) through security.
      • Try not to get upset if TSA ask you about your compression garments. I have been pulled out of line and had my garment swabbed so many times that I now expect it and have my answers ready.
      • Try to think of this as an educational experience. If you are asked about it, you can simply explain that you have a medical condition that requires a medical device. In my experience, TSA workers are nice and helpful after that explanation.
    • Once I get through security I go to my gate and bandage my arm (for me that means putting on my bandage alternative). I find that my bandage alternative is more comfortable and provides me with better compression for the flight than my day garments.
  2. Drink plenty of water! I know that many people think drinking water will make them swell more, but remember that lymphedema is a buildup of lymphatic fluid and not water. Drinking water will actually help move the fluid through your system and is helpful for you!
  3. Luggage: If you have upper extremity lymphedema, think carefully about what luggage you plan to bring. You don’t want to have a carry-on bag with a shoulder strap that goes on your lymphedema side.
  4. Food: As Amy so wisely stated in her last post, think about your food options and try to bring snacks from home that you can eat on the flight. You want to avoid sodium filled snacks that can make your swelling worse.
  5. Move around! If you’re going to be on a long flight, you want to make sure that you stand up and move a around a little to help keep things flowing. Don’t keep your limbs bent in one position for too long.
  6. MLD: Especially for long flights I like to do a mini version of MLD while I’m on the plane. This doesn’t need to be a full session, but I like to at least take a few diaphragmatic breaths. It’s calming and also helps my lymphatic system.
  7. Heat and humidity can make you swell more. When I’m traveling somewhere hot and humid, I try and keep my compression on as long as possible before getting the pool or ocean. Water has compression in it, plus swimming is great for lymphedema, but be aware of how long you keep your compression off. You’ll start to feel it when it’s time to put it back on!
  8. Jellyfish: I would encourage you to try and wear clothing that covers your lymphedema if you go snorkeling somewhere that might have jellyfish. From my personal experience, getting stung by a jellyfish (in two different countries) didn’t cause me any physical issues with lymphedema. It did, however, freak me out both times! It also freaked my CLT out when I emailed her from Costa Rica to tell her about it!

Things to bring with you:

  1. Compression supplies: I always make sure to pack extra bandaging materials, an extra set of garments if I have them, and plenty of lotion. It might seem like a silly thing to point out, but it’s much easier to have these items with you than have to worry about replacing something when you’re away.
  2. First aid kit: I always travel with a small first aid kit with antiseptic, band aids, and a topical antibiotic cream, just in case I get a cut, scrape, or anything else while I’m away. (This also lives in my purse at all times!) You are at a higher risk of infection because of your lymphedema and it’s good to be able to clean and cover any wound when it happens.
  3. Prophylactic antibiotics: This is something you should discuss with your doctor, but when I’m traveling out of the country, into the woods, or anywhere that isn’t close to a hospital, I always bring a filled prescription of antibiotics. In my 9 years of having lymphedema I’ve never had to take them, but they make me feel like I have a safety net. If I were to get a cut or even a bug bite that starts to look red or infected, I can take them right away and then find a hospital. This gives me a lot of piece of mind.
  4. Sun screen and bug spray: You want to try and avoid getting a sunburn in general or getting bug bites on the areas with lymphedema. I always make sure to wear and reapply sun screen and bug spray as often as the package tells me.

The most important thing to remember is that you need to live your life WITH lymphedema! Don’t let it or your fears take control. Have fun, experience new things, and most importantly, laugh! Laughing is also great for keeping your lymphatic system flowing! 🙂

Travel well,

Robin

p.s. Here are some photos from my most recent trip to Mexico.

Robin.lymphedema.sleeve Robin.lymphedema.sleeve.dress Robin.feet.beach.lymphedema mexico.lymphedema

The End of March – Lymphedema Awareness Month

Historically March isn’t a great month for me. I was diagnosed with cancer (both times) in March and also developed lymphedema in March. If my life was a fictional book, I might see the timing as some sort of epic foreshadowing, as if I was destined to one day declare March lymphedema awareness month. Developing cancer-related lymphedema was one of the most defining moments of my life. It changed the trajectory of my career, my goals, and the way I see the world.

I’m usually happy to see March end, but this year I’m a little sad to see it go. There has been such an incredible surge in lymphedema awareness this month that has both energized and consumed me. I find myself on Twitter and Instagram late at night searching #lymphedema and #LymphedemaOnEllen just to see if there are new posts.

By far, the best part of my new social media addiction is the wonderful people I’ve met. Even though I’ve worked in the lymphedema world for 8+ years, this is the first time I’ve had lymphedema friends and I’m loving it. It makes me feel connected and gives me hope that we will succeed in our shared mission to spread lymphedema awareness.

Thank you to Amy, my friend and blog co-author, and all of my new lymphie friends and siblings out there! You have helped make this an unforgettable March for me. Lets continue to keep the momentum up. I know in my heart that one day we will see lymphedema talked about on Ellen’s show!

All my best,

Robin

Drawing my new lymphie friend, Sarah, made of us! :)

Drawing from my new lymphie friend, Sarah.

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

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