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

  
 

 

Time…a wonderful way of showing us what really matters

We all need time and most would agree more of it!  However what if we were more present physically and mentally within in order to fulfill the need for more.  Have you ever reflected on what part of your journey has you comparing yourself and or your worth to others?  I will share with you from my heart that I found myself doubting my abilities, self worth, and physical attributes. Spending days and months at a time trying to figure out how I could acheive a different body, beauty and purpose without even realizing I had a bigger issue that I was choosing to overlook…fear.

This body of mine has been built over time, not overnight.  It has endured sacrifices and mental challenges to gain the strength to keep pushing forward despite the struggles, sweat, tears, and pain of not only my life long dancing career, but being diagnosed with Primary Lymphedema 4 years ago.  What I didn’t know when I started dancing at such a young age was my why? I can reassure you it wasn’t to achieve the best body or other superficial goals, but what I do know is that dance gave me a constructive yet fulfilling outlet to cope with a medical condition that I had been misdiagnosed with for over 18 years. Fear is what had me believing that I had to utilize dance to mask my doubts, depression and anxiety rather than tackle them head on by digging deep to acknowledge what created that fear in the first place.

Once I allowed myself to become more present both physcially and mentally as to what and why it was controlling me, it was then that I started believing my purpose and passion over my fears.  Time has shown me that goals and aspirations of mine have been achieved, that I am worthy and possibilities are endless. I now enjoy dancing, fitness, and being a makeup artist not only as remedies for mental health, but as a way to enhance my confidence and abilities as a woman to feel better in my OWN skin.

Let us all utilize the time we are given to build better versions of ourselves by replacing the fears with a strong focus on what we do have and how to inspire those around us with those God given attributes.

I want you to acknowledge your goals you have surpassed and I want you to believe that your purpose is greater than your fears, let time show you!

 

Live to Inspire,

Amy