Crowning Achievement for Lymphedema

May 1st 2016 was nothing shy of a dream come true! I won the Mrs. Florida International 2016 title and was crowned by my husband, Ruben Santiago! With so many thoughts racing through my mind, I found myself just trying to catch my breath as the euphoric high of every single emotion was hitting me all at once.  This was a crowning achievement in more ways than one and it takes an immense amount of patience, time, support, preparation, empowerment, courage, faith, belief and love to build a passion filled platform.

5 years ago had you told me I would wake up on May 2nd 2016 having conquered many fears by coming out of silence with my diagnosis of Primary Lymphedema and would unlock the “Key” to my significance, I would have never believed you. Through an immense amount of unconditional love from my husband Ruben, encouragement from ALL of my family members, support from the Lymphedema community around the globe and empowerment from countless individuals, as well as a healing approach from the inside out, I have broken the chains that once controlled me and held me captive, yet it was not possible to achieve such things all on my own.

Ruben, MyLove you have literally filled my heart and our marriage with the greatest gifts of all and ones that I could never repay you for! I am honored to be your wife and I Thank You for inspiring me to continue fulfilling this passion filled purpose.

To ALL of my family, your unwavering love and belief for my journey has moved me to tears. My title may have changed, but I will always be “Titi Mimi”

Jason Fontes, I made a promise to you 4 months ago that your life and legacy would live on, as my “purpose” now became that much bigger after Ruben and I experienced your loss. I dedicate everything I do in honor of you and I know you are always shining upon us! We Love You Brother!

My Director of the Florida International Pageants, Marianne Oden. I am blessed to have a woman beside me through this new chapter of my journey as Mrs. Florida International 2016. A role model who is filled with empowerment and inspiration! You not only provide an opportunity for all to share their hearts and platforms, but a bigger chance to see gifts within ourselves that maybe we didn’t notice could create change before.

The judges who endured the toughest job of all. Thank you for investing your time and hearts to listen, watch and believe that I will continue being not only the Voice of Lymphedema but also the Voice of Significance, making the State of Florida as well as the rest of the world proud!

To the incredible team of amazing individuals, every one of you played an important role in preparing and supporting me for this adventure!  The Florida International Pageant Team, Marianne Oden, Katy Carson, Pam Livingstone and their entire Production Team, all the volunteers and the team at Westgate Resorts. Carmen Steffens, mediusa and medi for help in Haiti, Lymphatic Education and Research Network, LymphCareUSA, BSN Medical, Tactile Medical and the National Lymphedema Network. MadSkye Advertising, Clay Spann PhotographyRegalia Magnificent Apparel, Dawn Brinkman, Diane Ventura, Suzy Bootz, Brandi Lamb and Robin Miller.

Mrs International pageant and directors, Mel and Mary Richardson. I am humbled to grace the International Stage in July representing the State of Florida! Thank you for creating an opportunity to bring Women together from all around the world and placing importance on giving voice to various platforms.

My Florida International Sister Queens, I was honored to share in this adventure and together we will create change around the world with each one of our platforms. To my new Miss Teen, Jaclyn Weber and Miss International, Rachel Barcellona. I cannot wait to experience the International pageant in July with you both and am looking forward for the opportunities and memories that we will build as Florida International Queens!

Live to Inspire,

Amy Santiago

Mrs. Florida International 2016

 

 

 

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

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