From My Heart…


This mind, body and soul have been built over time, not overnight. It has taken time and sacrifice to build the mental strength to not give up and keep the faith, despite the struggles and pain at times.

I did not start my dancing career at the age of seven to get recognition or achieve superficial goals. When I decided to take my artistic and creative talents and turn them into being a makeup artist, I didn’t make that choice thinking I am going to be the best in the industry. I made these decisions as a way to express myself, not even realizing these were gifts that would bring me immense healing aspects for years to come.

Honestly it wasn’t until a few years ago that I started to heal from the inside, out in order to make those connections and really understand why I was utilizing two completely different gifts as constructive outlets. Learning that these were ways for me to cope with my past and even the diagnosis of Primary Lymphedema I received in 2011 was not an easy lesson. Any opportunity to perform and create trending makeup looks always seems to take me completely out of my element to where I get lost in the moment. No pains from the past, no thoughts of managing a diagnosis, only left with a challenge before me that was providing me with endless rewards. Hence why I constantly immersed myself into my talents and continue to do so. Being able to make these connections has given me a healthier mental approach with my lifestyle and has allowed me the opportunity to rebuild my self-trust and self worth that at one point I had lost.

I believe confidence is the new circumstance! Finding new goals and aspirations show me that I can still enjoy my gifts not only as a remedy for mental health, but also as a way to empower others and myself through my passion filled purpose.

I want to always feel better in my OWN skin, which is my wish for YOU too!

Live to Inspire,

Amy

Knock Out Beauty

Makeup is such a powerful tool! It provides us with creative ways to enhance, compliment and think outside the box with an array of colors. To witness physical attributes transform right before our very eyes is empowering to say the least.

With so many amazing beauty products on the market, it makes it difficult at times to decide which ones may fulfill our needs, wants or desires when completing that look. Do you find yourself always-reverting back to certain products that make you feel your absolute best? What is it about those beauty products that give you those confident feelings? Certain packaging, bright or neutral colors, coverage and wear ability are all key factors for most, but what tops these factors is finding a brand that stands behind a message through the power of makeup.

I came upon Sonia Kashuk about 8 months ago and immediately fell in love with this unique beauty line. From the creative aspects of a broad variety of makeup products to a full lineup of bath and body and plenty of accessories and tools to fulfill any need. This line truly inspires the beauty of being.

Not only does Sonia Kashuk create her own performance-based makeup formulas, blended from ingredients of the highest quality; She also designs high-end packaging to showcase her luxurious, yet affordable makeup line. Her uncompromising commitment to beauty and perfection is in constant motion and expansion: every season Sonia reinterprets the trends, creates new colors, new shapes and patterns for brushes, bags, and more. Her latest Spring 2016 limited edition collection “KO Beauty,” encourages women from around the world to Knock Out Negativity through the empowering messages scribed on every item within the collection. What a wonderful reminder when using these products that “You Are A Knock Out Beauty” and to “Keep Your Head Up.”

I encourage you to check out this collection and be empowered on a daily basis by making luxury fun, glamour affordable and recognizing that confidence radiates beauty from the inside, out.

P.S. All of us are Knock Out Beauties!

Live to Inspire,

Amy

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.

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

  
 

 

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

Himalayan Salt the Powerful Healer

I am always researching natural treatments and tools that will help boost my immune system, promote circulation, and energize my body in order to increase proper lymph flow within my lymphatic system.  

Prior to leaving for my trip to Santa Barbara, CA I came across Salt.  It is a Salt Cave that is built from 100 percent Himalayan pink rock salt in its natural crystalline form.  Salt provides a unique environment to relax, recharge, and rejuvenate the body and mind. Their scrubs and massage treatments are followed by a 45 minute session of complete serentity in one of their beautiful salt caves breathing in the mineral-rich air.  Natural Pure Himalayan crystal salt contains many of the elements of which the human body is comprised.  Some of the health-enhancing qualities are electrolyte and pH balance (alkaline/acidity), promotes increased nutrient absorbtion in the intestines, improves circulation, strengthens bones, and lowers blood pressure.

Santa Barbara's Unique Underground Salt Caves

Santa Barbara’s Unique Underground Salt Caves

 A particular treatment Salt offers that sparked my interest was a Lymphatic Massage (a very gentle massage) yet different from Manual Lymphatic Drainage (MLD) because they also use the Lymphstar Pro.  This is a tool used in conjunction with the massage to aid in detoxifying the lymphatic system, resulting in an increased movement of the protein rich fluid and in turn helping to boost the immune system.

LymphStar Pro Fusion, used in conjunction with the Lymphatic Massage

LymphStar Pro Fusion, used in conjunction with the Lymphatic Massage

I was at peace and so relaxed throughout the entire treatment and I can honestly say I have never heard or felt my entire system make such unique sounds.  I was able to actually feel movement of the Lymph fluid.  This was such an amazing feeling to know that my body was functioning the way it should!  I left there feeling so energized and refreshed.  Definitely an experience that I will add to my “toolbox” for maintaining my Lymphedema.  I will be researching similar options like Salt in Florida and around the globe for when I travel.

Living and Healing with Lymphedema,

Amy

For more information / Online Boutique Visit: http://www.saltcavesb.com

I got Salted in Santa Barbara and I loved it!

Mrs. Central Florida International is Saltsational

Mrs. Central Florida International is Saltsational