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

Bringing Hope to Haiti

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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.

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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.

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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

LymphSystem = Lifestyle of Health & Fitness

In case you were not aware of your Lymphatic systems job function, I would like to share with you just how big of a role it plays and why I encourage you to reflect on how a lifestyle of Health & Fitness can be very beneficial.  Your body contains 3x more Lymphatic fluid than blood and your Lymphatic system is composed of nodules, vessels, and glands which move toxins and waste away from cells, in turn replenishing them with good (I like to refer to my Lymphatic system as the “Cinderella” of my body).  These harsh toxins and waste living in our body could be from the foods we eat, the lack of supplements or even pollutants.  We all rely on our Lymphatic system more than we realize because unlike the blood which is circulated by the heart, the Lymphatic system relies on our physical activity to continue moving fluid along.  No movement = things get backed up and proper nutrition/supplements is always key in helping things digest properly too.

There are many recommendations of different types of nutrition remedies to help move along lymph fluid, but keep in mind that every “body” reacts differently and no 2 Lymphatic systems are the same.  You can start by speaking with your Lymphatic Therapist or Primary Doctor to ask them what they would recommend based off of your medical history and start by doing a process of elimination.  Take notes on foods that make you feel bloated, sluggish or fatigued when you consume.  Then journal about other foods that gave you more engergy, a clearer mindset, and leave you feeling satisfied to accomplish tasks that the rest of the day may bring!

Being that the Lymphatic system is like a car engine in our body that never shuts off, wouldn’t you want to not only give it the proper nutrition it needs, but also keep it fine tuned?  Don’t let your body break down, this is where your fitness is vital!  No need to go crazy and something is better than nothing, remember your body can stand almost anything, it is your mind that you have to convince.  Allow yourself to see the strength and beauty of which you are capable of and you will empower yourself and your Lymphatic system!

Living Strong and Healthy with Lymphedema,

Amy

Helpful suggestions to a more vibrant “you!”

 

One type of compression that will help move Lymph Fluid when performing light cardio, moderate or strength training.

Getting Creative with foam

While it’s true that there are standard “tools” for treating lymphedema, most patients and their lymphedema cases are different. We respond differently to the many types of garments, compression, and accessories (ie foam, inserts, devices). There are many different companies that make products for lymphedema and there is a good reason for this. Even within the same companies there are different fabric choices, methods of construction, compression classes, and tons of different shapes and sizes ranging from off the shelf to custom.

I have had lymphedema for about 9 years now and have tried the majority of the garments that are on the market. Some of them work well for me and some of them don’t seem to fit me or contain my swelling as well. This can change at any time too. There have been times in my life when I was wearing the same type of garment for years (making sure to have it checked before I reorder of course) and then all of the sudden the product didn’t seem to work for me anymore. That is unfortunately the nature of lymphedema, the longer the fluid sits in your tissues, the more it changes and you need to adapt with it.

I get that this can be frustrating and difficult for people, especially when they are new to lymphedema and are trying to figure out what works for them. Be patient and know that a little creativity can sometimes help.

I have small wrists as well as swelling in the dorsum (back) and palm of my hand. Both of these things can make bandaging difficult for me. I have played around with many different types of pads and finally figured out a way to make a pad that helps with both sides of my hand.

My personal hand foam recipe:

  • A roll of Velfoam / RFoam (I get this from http://www.lymphedemaproducts.com, but there are many places that sell it.)
  • A few sheets of blank paper
  • Scissors
  • A Sharpie or some other pointed tipped marker
  • A pen

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  1. Start by folding a piece of paper in half, placing the paper with the fold toward your knuckles, and tracing the back of your hand. Make sure to leave a little bit of space between the fold and the top of your knuckles so that there is space for your fingers to go in between.
  2. Next, flip the paper and trace your palm on the other side. Make sure you draw holes for where your fingers will go. Cut the whole thing out including the finger holes and try it on. It might take you a few tries to get the right shape the first time you make it. (Be careful when trying the paper on so that you don’t get a paper cut!)
  3. Once you have a shape that seems to work, lay it on top of the foam and trace the shape with the Sharpie.
  4. Cut the shape out of the foam and try it on. You might have to adjust it a little, but it should fit your hand pretty well.

I typically hold the foam on with my second roll of finger bandages (the one that reinforces my knuckles) to make sure it stays in place. I like the Velfoam because it keeps its shape pretty well and doesn’t rip or fall apart as easily as gray foam. You can try it out of any foam that you prefer though!

There are many other ways that you can use foam to help with bandaging or garments, this is just an example that works for me. Talk with your CLT about your problem areas and see if you can come up with something together that will work for you.

Best,

Robin