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

 

 

 

Lymphedema after Breast Cancer

Thousands of men and women are diagnosed and treated for breast cancer every year. We know the numbers are a massive difference when we look at the break down between the two, however treatments are very similar. Most breast cancer survivors are able to continue on with life after treatment or surgery. Others are left with a daily reminder of one huge obstacle they were able to overcome, but now faced with a bigger challenge ahead.

Women

In 2016, it is estimated that among U.S. women there will be:

  • 246,660 new cases of invasive breast cancer (This includes new cases of primary breast cancer among survivors, but not recurrence of original breast cancer among survivors.)
  • 61,000 new cases of in situ breast cancer (This includes ductal carcinoma in situ (DCIS) and lobular carcinoma in situ (LCIS). Of those, about 83 percent will be DCIS. DCIS is a non-invasive breast cancer and LCIS is a condition that increases the risk of invasive breast cancer.
  • 40,450 breast cancer deaths

Men

Breast cancer in men is rare, but it does happen. In 2016, it is estimated that among men in the U.S. there will be:

  • 2,600 new cases of (This includes new cases of primary breast cancer among survivors, but not recurrence of original breast cancer among survivors.)
  • 440 breast cancer deaths

When you are talking about just one year and country alone, these numbers are shocking! What is even more shocking is that 40% of ALL breast cancer survivors will develop lymphedema. At this rate 123,064 women will develop secondary lymphedema and 1,040 men just from the 2016 breast cancer cases. Lymphedema is increased swelling in an extremity due to damaged lymph nodes. Typically the extremity that would be affected in a breast cancer case would be the upper extremities, arms and hands. Some of the reasons are due to Chemotherapy and or Radiation for cancer treatment. When surgery is done for breast cancer, it is more common than not for lymph nodes to be biopsied to see if cancer has spread to them. If there is cancer in the nodes, this can impact prognosis and alter treatment or removal of lymph nodes. The more lymph nodes removed, the greater the risk of lymphedema.

Lymphedema can occur immediately, or over time and can be so mild as to be hardly noticeable or so severe that it is painful and disfiguring. The goal would be to catch it in its early stages so the extremity can be maintained and not cause permanent damage to the body. Since the lymphatic system is part of the immune system, its job is to protect against bacteria, viruses, fungi and even cancer. The lymphatic system includes the spleen, thymus, lymph nodes and lymph channels, as well as your tonsils and adenoids. A normal functioning lymphatic system is critical to our health. Although at this time there is no cure for lymphedema, it can be managed with complete decongestive therapy (CDT) by a certified lymphedema specialists and suggested compression garments. Education, awareness and knowledge are crucial when it comes to treating breast cancer, as it can leave you with a secondary situation such as lymphedema.

To learn more about breast cancer related lymphedema, please watch the latest CBS News story on Academy Award winner, Kathy Bates and how she is now a voice for lymphedema around the world.  I am honored to share this platform with her through the Lymphatic Education and Research Network as we continue to build momentum for the 140+ Million individuals around the world that are affected by all types of Lymphedema and Lymphatic related conditions.

Live to Inspire,

Amy

 

Additional Resources for Lymphedema at: Amy Santiago’s Website

Source Used for Breast Cancer Statistics: Susan G. Komen

Expand your Fashion Creativity and Support a Mission

I have always thought of ways to try and jazz up my Lymphedema garments in order to compliment my daily fashion and most of the time it’s hard to do, because my day-to-day wardrobe can change drastically. Sometimes my fashion says sporty gal, while other times I am in comfy travel mode or complete opposite, fashion forward. I would need something that gave me the availability to adjust to my needs, yet allows me comfort and style.

I recently had the pleasure of being introduced to a product that have all of these bases covered, Xpandasox! Whether you have curvy legs, athletic calves, or slender stems, Xpandasox is a sock that fits every body. This product is unique in that it features the awesome xpandapanel in the back built into every pair, which allows a better fit that stretches 24+ inches and contracts to fit your body and stay up without binding or falling down.

They are not only ideal for complimenting Lymphedema and Lipedema garments, they are perfect for all types of leg swelling including pregnancy. From the xpandasport line, to basics, fun fashion and a unisex line, I was surprised to see the various types of patterns, trends and array of colors they have available.

The part that sold me on Xpandasox is that they are a “mission driven” company!  For every pair of socks purchased, they will deposit one pair into the “Sock Bank.” Socks are the most asked for item in homeless shelters in the USA, and they have partnered with organizations that will withdraw socks from their bank to give to those in need.  What an incredible creative inspiration that is changing the lives of many through a comfortable piece of fashion.

To see how you too can expand your fashion creativity and support a mission of giving back, visit Xpandasox they ship worldwide!

Live to Inspire,

Amy


*Please note these are my personal thoughts and not to be treated any other than or replaced with current medical advice.

LE&RN Florida Chapter

 A warm welcome from the Sunshine State! My name is Amy Santiago and I am ecstatic to announce the launch of a LE&RN Chapter in the State that I was born and raised in, Florida! 

 An avid dancer since the age of seven, performing in the spotlight was a true passion of mine. It wasn’t until about the age of fourteen that I started experiencing symptoms bilaterally in my lower extremities that were literally slowing down my dancing career and transforming my body, to where I became determined to find answers. Various tests and appointments were completed with primary care physicians, podiatrists, vein and vascular doctors, even cardiologists thinking maybe I was dealing with a heart issue or heart disease due to family history. The constant search had me physically, emotionally, and mentally exhausted. Not a glimmer of hope, just countless misdiagnoses. 

Fast forward to 2007, my heart was focused on the new journey ahead as a newly wed, but as time went on the symptoms worsened, frustrations and emotions were slowly taking a toll on my self-confidence and self-esteem. My husband, family and faith were not going to allow me to face this journey alone. Their constant encouragement to never lose hope instilled a greater determination within and I was no longer going to settle for the unknown. Although I wanted answers, there was no amount of time that could have prepared me for the life long journey ahead. In 2011 I was diagnosed with Primary Lymphedema after eighteen years of not being able to treat or manage my symptoms.

I did not want to cause permanent damage to my body, so I immediately sought out numerous approaches to reduce my swelling and maintain my symptoms from an outward appearance. Compression garments, pump, manual lymphatic drainage massages, and bandaging are some of the tools I utilize. A more personal decision was to heal from the inside out, by changing my perspective on how I was not only going to live with Lymphedema, but thrive with it. A healthy lifestyle of wise food consumption paired with workout routines and mental clarity, has created balance within my body and the ability to control my symptoms utilizing all of these facets.  

 The frustrations and defeat have since turned into a passion filled purpose! My determination to create change, raise awareness and educate those in and out of the medical field is fueled by the millions whom have not been diagnosed, may just be starting their Lymphedema treatments or have been suffering in silence with their diagnosis. I have taken to the stage once again, but this time to utilize my voice by shining the spotlight on Lymphedema and Lymphatic diseases through a pageantry title as Mrs. Central Florida International. An amazing door of opportunity opened to LE&RN in 2014, and I beyond blessed to now introduce the LE&RN Florida State Chapter!

Our goal is to encourage all patients, medical professionals, businesses, friends and families to come together! As our Chapter begins to evolve and to take shape locally, we will hold inspirational fundraising events, share resources and support one another globally.
Let’s Spark Change!

Please reach out to me at
 LE&RN Florida Chapter to share your ideas, stories or how you would like to be a part of instilling hope.
Together we will Live to Inspire!   

Amy

There is no “One Stop Shop”

I have people ask me all the time, what is it that you utilize to maintain your Lymphedema symptoms? As much as I want to provide them with a simple answer and solution, I can’t because I utilize so many different facets of maintenance.

Let us all be honest right now. What most of us are searching for is the “cure,” that “one stop shop” that solves our symptoms. I can relate because at one point I had developed the same mentality. I thought it was as simple as sticking a needle in me in order to drain the swelling, I know a bit extreme! I thought if I couldn’t fix this and make it go away, than I have failed. The search of the “quick fix” had me emotionally drained, frustrated and never satisfied.

Although I wanted answers, there was no amount of time that could have prepared me for the life long journey ahead. I had lost sight on the last eighteen years of countless misdiagnosis and never acknowledged the challenges I had overcome in that period of time of not being able to treat or manage my symptoms.

A moment stopped me dead in my tracks and had me questioning, do I want Lymphedema to control me, or will I take control of my life with Lymphedema? It was then that I decided to no longer search for just one solution, but multiple approaches. From an outward appearance some of the tools I utilize are custom flat knit compression garments, athletic compression socks, pump, manual lymphatic drainage massages, and bandaging. A more personal decision was to heal from the inside out, by changing my perspective on how I was not only going to live with Lymphedema, but thrive with it. A healthy lifestyle of wise food consumption paired with workout routines and mental clarity, has created balance within my body and the ability to control my symptoms utilizing all of these facets.

I acknowledge that we are all living with various conditions differently, so our approaches and daily decisions will never be one in the same. Therefore it is up to each one of us to choose how we are going to live a life full of purpose and passionately inspire one another to thrive!

Live to Inspire,

Amy

 

If you have any additional questions on the items I utilize, please feel free to comment or send me an email by visiting: http://www.amysantiago.com

  
 

 

Bringing Hope to Haiti

MFH_Haiti_11

It is the unknown that causes the majority of us to suffer in silence. The lack of education, knowledge and a feeling of desperation trying to find the right treatment options that leaves most patients hopeless. As a full time ambassador and one of 140 million that are affected by Lymphedema I have made it my mission to share my journey with those around the globe and to encourage others to give voice to their unexpected journey.

After learning how medi for help was created my heart was immediately connected to the cause. Medi for help saw a need after the town became the epicenter of the 2010 earthquake from there they created a movement that is changing lives. Although I had no idea what to expect when I was approached with this opportunity I knew the only thing that mattered was that through the volunteer efforts we were Bringing Hope to Haiti!

Anticipation, excitement and an overwhelming feeling of joy set in as I boarded the plane to join medi for help at the Lymphatic Filariasis Clinic in Leogane, Haiti. The minute I stepped out of the airport I knew this was going to be a life changing experience on so many levels not only for me, but everyone involved.

Taking the drive to the Sainte Croix Hospital was an adventure itself, witnessing the Haitians selling goods wherever there was space on the streets or from a basket that was balancing from atop of their head. A group of children walking home from their afternoon at school, and other’s preparing dinner on their front porch while the laundry was being washed in a bucket nearby.

Once we arrived at the guesthouse we were greeted with open arms and beautiful smiles. I was excited about the week ahead with the other volunteers to be a servant to those whom are living with Lymphedema / Lymphatic Filariasis by giving them a chance to thrive with it. Combining the proper treatment with the garments that MediUSA had provided would give them back a quality of life and glimmer of hope.

The full time staff at the clinic in Leogane was truly an inspiration to watch because I noticed two of them were living with Lymphedema themselves. Their passion was fueled by their personal condition while the others had an immense desire of providing relief and answers. What a humbling experience to see the courage and strength from every single patient that came to the clinic to seek help and guidance. They had faith in the staff and volunteers, trusting the treatment efforts they were being provided. An opportunity to thrive is what they were receiving on a daily basis and they left with smiles on their face, even looking forward to their next appointment.

To witness the changes that took place through the time spent in Haiti were a true testament that Lymphedema / Lymphatic Filariasis can be maintained and managed with the right treatment, direction, garments, education and awareness.

Thank you medi for help for your ongoing efforts in Haiti and allowing others to be a part of Bringing Hope to Haiti.

To find out more on how you too can be involved in these efforts or to donate please visit: www.medi-for-help.com/en/

Follow my journey around the World as a Global Ambassador…

Together we will Spark Change!

Live to Inspire,

Amy

Additional Photos can be viewed On the web at: www.amysantiago.com
Please Visit and Follow * Mrs. Central Florida International 2015 * Facebook Page for Updates.

SAM_1804MFH_Haiti_1

MFH_Haiti_24

MFH_Haiti_2

MFH_Haiti_26

MFH_Haiti_15

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