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

 

 

 

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

Are you Heating Up or Cooling Down?

Does anyone else find his or her symptoms worsening during the summer months? Just because summer is heating up, does not mean your Lymphedema has to. I have made it a point to keep track of my personal journey and have also spoken to others affected by Lymphatic conditions to provide you with some helpful tips and tricks. The most common effects of increased Lymphatic symptoms more so during the summer months seem to be heat, humidity, travel, diet, dehydration and stress. So how do we stay mindful of these effects in order to maintain a healthy lifestyle and thrive with our conditions?

First I encourage you to journal, take photos and track your symptoms good and bad. I have gained so much from doing this since being diagnosed. It has allowed me to mentally and visually track my progress and grasp a more in depth understanding of tools that may not work, and others that are rewarding for my body and condition.

For those of us who live in areas where heat and or humidity are as common as the air we breathe we have to be extra cautious that hydration and diet will play a huge role in aiding proper lymph flow. Extremities tend to expand when temperatures heat up causing swelling and possible infections. Paying close attention to healthier food options and consuming plenty of water has been known to help eliminate built up protein fluid within the body, known as Lymphatic fluid.

When it comes to traveling with conditions that can be taxing on the body it can be stressful, believe me I know first hand. I used to sweat the small stuff, like the fact that TSA would question me through security about the garments I would need to wear on the plane. Having to plan my travel attire and footwear around my garments or having to place my garments on once I got on the plane. Not anymore! I realized the things I was choosing to stress about were completely out of my control. These affects are part of living with a condition so I had to change my perspective on how I dealt with them in order to thrive with Lymphedema.

Some helpful tips for those of you traveling on aircrafts and may need some extra time to get settled with your garments and luggage, I encourage you to speak with the gate agent and ask for a “pre-board” ticket so you don’t stress yourself out by thinking you are holding anyone up in the boarding process. Also bring your own healthy snacks with you, since aircraft options tend to be filled with sodium and fillers that impair the Lymphatic system. Lastly, choose your clothing and footwear carefully, something that is not restrictive. Extremities are going to expand due to high altitudes and the last thing you want is to be uncomfortable especially on long flights.

You have the power to stay in control of your condition by being present and mindful of your symptoms and how your approach can either heat things up or cool them down.

Living to Inspire,

Amy

Where does your passion come from?

Passion

The power of energy that builds from within is such an incredible feeling when we stay focused on things that we are passionate about.

I grew up creating my life through color.  Very early on I would find immense joy out of arts and crafts projects, and at one point selling my projects to earn some income.  No I did not have financial responsibilities at the tender young age, but I was determined to be able to afford items that I felt would grow my creative abilities.  Whether it was items from the book fairs at school, arts and crafts tools at a local store or items for inspiration, I would find a way to use my passion in order to make it happen.

Taking my love for color I placed the same value into my love for dance, which started at the age of seven.  This opportunity allowed me to express my personality through my feet and continue building upon my creative talents, which grew my passion as a dancer into a choreographer with various performances throughout my journey.

I learned to take the challenging aspects that dance brought and face a challenge, yet passion that I had for years.  Makeup Artistry!  I was no longer just using my creative talents to place on items to sell, but was now able to show people how to feel beautiful from the inside out through the power of color and makeup.  What a rewarding opportunity to utilize techniques, products, and placement to exude true beauty and create memories through the process.

Although I used my creative talents to express various aspects of my life through color and dance, I had truly not been able to use my voice to share with the world where my passion comes from.  You see it wasn’t until I started noticing symptoms in my lower extremities that were literally slowing down my dancing career to where I became determined to find answers.  Those answers would not come to me as quickly as I could finish a makeup application, art project or choreograph a dance.  In fact it took 18 years of misdiagnosis until I received a diagnosis of Primary Lymphedema and I now faced what would be an opportunity to fuel another passion of mine, my story.

Giving Voice to Lymphedema has opened my heart and eyes to feel and see strengths I never knew existed.  You can say my life has come full circle from being able to use my passionate filled journey to express who I am through my feet, hands and now voice has been such an enlightening experience every step of the way.  Let’s not forget we all have a story that fuels those passions, so I encourage you to feel the power of your own energy and focus on where your passions come from.

Living with Passion,

Amy