Just this week, the Lupus Foundation of America unveiled their powerful tool for lupus patients around the world; The National Resource Center on Lupus. 

I was honored to be asked as someone to have a "first look" prior to the unveiling, and to take part in a webinar that allowed ambassadors around the country to become accustomed to the user-friendly platform to get the most out of the center. The main takeaway was the mission of the foundation with this center, which is to empower, educate and relate.

The LFA strives to create content that will empower their audience to feel as though they are able to take action in their community and with their own health. By being more aware of coping strategies, treatment options and more, patients will become their own advocates while approaching an unsettling disease. This was accomplished through the center by education and awareness, because many are misinformed about the manifestations of lupus. It dispels myths and answers any question that may come to the mind of a lupus patient, family member/friend, or health care provider. Vital for the psyche of patients, the LFA relates and connects patients to other patients in the country by giving raw content of personal stories offered to the foundation to assure others that they are not coping by themselves.

I think of this as a home base for my day-to-day questions and concerns. Whether it is about a new medication I am prescribed, questions about an appropriate lupus diet to decrease my risk of heart disease, how I need to evaluate and approach a different symptom, or keeping up with my mental health and wellbeing while coping, I have a resource to go to. I am able to go to the topics index pictured below and choose from forty topics pertaining to lupus. The NRCL also gives me options for my advocacy and ambassador position, giving me scientific research done on lupus for diagnostics and causes, healthy lifestyle factors, symptoms and related conditions, impacts of lupus, treatments and research participation. This research tab is a powerful tool to display the efforts of the LFA, and all of the exciting research being done to improve the lives of those living with lupus and potentially finding a cure.

On the home page, you are also able to choose your "category," whether you think you have lupus, were newly diagnosed, you have been living with it for some time, you are a child, teen or young adult, a caregiver or a healthcare provider. These categories are excellent guiding tools that mold to a specific population within the lupus community, to help their needs the most effectively.

In all, the NRCL has over 600 medically-reviewed publications on a wide range of topics, so patients and caregivers know that they are obtaining legitimate advice for their illness. According to the LFA CEO, Sandra Raymond, it is "based on forty years of experience and insights that we have gathered working closely with world-renowned lupus experts and the lupus community, as well as from a comprehensive research effort conducted by the organization." This is why I have been enlivened regarding my patient advocate and ambassador position within the foundation. The LFA is so proactive in researching and overcoming every aspect of lupus from biology to lifestyle, and truly wants to be a driving force in helping their patients succeed in their lives despite lupus. The National Resource Center on Lupus is a direct result of promoting awareness, because of the federal funding, research funding and personal fundraising accomplishments by everyone involved. This is an illustration of where our fundraising efforts go to, which is extremely exciting!

Please share this post and spread awareness of our new tool that can change the lives and perspective of millions of people! Also, feel free to click around on the links within the article and explore the site. Although difficult to accept, it is an encouraging time to be diagnosed with lupus because of all the good that is being done for us in the community. Help us accomplish our goals to "Know Lupus, for a future with No Lupus."

Some people just ask me how. How could you be so passionate about something that has altered your life and causes you suffering? How do you have this strength to keep pushing? That's always an easy one. I try to fight back harder than how hard lupus attacks me.

Lupus has changed the way I think, feel, how I approach different people and situations, how I plan my future; I could go on. What is my forceful method in fighting back? Becoming part of that force dedicated to finding a cure.

I started out volunteering for the Walk to End Lupus Now NYC right after I was diagnosed last year. I had great success fundraising, an enjoyable time with my family and boyfriend, and had an emotional first walk inside. It was truly an incredible and inspiring experience. I fundraised to attend the Evening of Hope Gala, where the speakers tugged on my heart strings and almost drove me to tears and spoke of inspiring projects that could finally lead to a cure. I became part of the Young Leadership Committee in NYC to bring young minds together to unite the entire metropolitan area in raising funds for lupus research. I became hooked. I knew that I was making a difference. Now, I was invited by the foundation to become an official Lupus Foundation of America Ambassador and participated in formal training just last weekend. This is such a proud time in my life; this is why I find this strength to become an ambassador.

I can control the uncontrollable 

In reality, only God knows what my situation with lupus is going to end up like. In the meantime, I can take steps to ensure I live the most fulfilling life possible despite lupus. They call this autoimmune disease the cruel mystery because nobody can predict what it will affect day to day. By becoming an ambassador, I can create a force in society that will encourage education about this illness, bring about constructive conversation, increase awareness and funding, and increase our chances of finding a cure. This is what I can have control of. I can't predict what tomorrow will bring, but I do know that my efforts will directly correlate with the expansion of vital research. Subconsciously, this is how I cope. Every time I speak or attend an event, I feel this new glimmer of hope. I'm confident that by these efforts, we will find this sought after cure for lupus in our lifetime.

There's a force I can always turn to 

I've gained a new family. Being from the NYC area, I've met people at these events from all walks of life and we all have one common goal that brings us together. This unity is truly remarkable. We are not only advocates for ourselves, but advocates for each other, and we constantly celebrate each other's successes. Whether that's on social media or in a private conversation, we all know we have someone out there that knows what having lupus is like and who is advocating just as hard as we are. I met with some amazing people at our ambassador training last weekend. Reacquainting with some old faces and encountering some new ones, we were able to open up and share the dark times of our stories but at the same time celebrate what we were trying to accomplish together. Each one of these beautiful people are taking this disease in their hands and choose not to be negative about the outcome of their lives, instead they are strong and make the world a better place. Being surrounded by this is surreal, and I finally feel like I am not the only one battling this. I feel like although I lost some quality of life, I gained a second family which is truly priceless.

Empathy

This is huge, and is a reason why I wish to pursue the career path in health care that I'm embarking on. I know the daily struggle of lupus, but I'm blessed that I am able to still do so much in my life. When I'm uncertain where my path is taking me, I take time and pray that God will carry out his purpose for me. Through my journey I know that God is using this illness for good, and not to give me hardship. One Bible verse nails it perfectly and was sent to me right after my diagnosis, and boy was it right.
Jeremiah 29:11 says:

Soooo, I took the plunge and started a brand new wellness journey! I'm still very faithful to my gym ways, but I found that starting to practice yoga has already had wonderful benefits within these first two weeks. It has honestly been a perfect addition into my lifestyle; I'm able to focus on my mind, body and spirit at once to better myself every day. I love lifting, but we all hit plateaus and it can be frustrating. I've also had issues with pain and fatigue from lupus, which made getting to the gym most days pretty difficult. You can see my recent blog post here about how I addressed this situation. If any of you know me well, you know I don't do well with swallowing my pride and sitting home at night not exercising. Well now I finally listened to what my doctors have been telling me to do for years!

Attending yoga classes has given me the opportunity to choose which class I would like to attend based on my stress and pain levels. Some days, I love a great workout so I go for the Power or Wall Yoga class. Other days when I'm really hurting, Restorative Yoga might be better. If I need more of a moderate workout focusing on isometric contractions and balance, I go with Vinyasa Flow. So, Why Yoga? Below are some of the many known benefits of yoga from the American Osteopathic Association. These are some of my favorite and ones that I find the most important!

1. Cardiovascular and Circulatory Health

Yoga is GREAT for circulation, without the risk of damaging vessel structures. This is so important for anyone; but in the lupus community, we suffer from Raynaud's Syndrome and have an increased risk of heart disease, so this is crucial! Heart health and circulation can affect every single part of your body. If something is off, it can really be detrimental to something you would think is totally unrelated. So how does yoga do this? Besides proper movement and stretching, it focuses on coordinating your breath with each movement you make. Often times, we stress our bodies when we exercise because we actually have the tendency hold our breath during forceful movements. This only ends up increasing blood pressure and limiting oxygen to the heart and brain. When we focus on this breath-movement coordination, our bodies can move naturally as well as providing the proper amount of oxygen needed for that specific movement. When you take deep breaths in and out as you move, you open up the vessels and the caplillaries, allowing the hemoglobin in your blood to oxygenate which in turn fuels your muscle growth, recovery, and brings less stress back to the heart. This also lowers blood pressure since there is a lesser chance of vasoconstriction. Besides the nerdy stuff I mentioned, it lowers your physical and mental stress which is a huge plus!

2. Balanced Metabolism

Metabolism is a process that occurs in all people that has sort of become a buzzword in the fitness industry. But what does this actually mean? Metabolism is a biochemical process inside the body that occurs at rest, but is triggered by movement, exercise, and digestion. For each stage of life, we have an ideal metabolic rate, that is healthy based on our age. If it is too low, we become unhealthy and gain unnecessary weight. If it's too high, it could be damaging because we are never satisfied with what we eat. When we move our entire body, like in yoga where we focus on balance and compound movements, the endocrine system initiates hormones to release from their glands for optimal organ function. More widespread movement = more glandular recruitment. We can then digest food from the day easier, and more efficiently use our energy sources. When we use our energy sources efficiently, we are able to initiate lipolysis (fat breakdown) as we use our carbohydrates and enter an aerobic state.

3. Improved Respiration, Energy and Vitality

This ties in strongly with my first point about heart health and circulation. The breathing focus in yoga improves respiration and lung function, which is also important in lupus patients because we often times suffer from pleurisy (inflammation of the outer lining of the lungs). So how does this form of exercise affect our energy and vitality? First, when the brain receives more oxygen through whole body movement and proper breathing, it operates sharply. A lot of people with chronic illnesses suffer from brain fog and fatigue, so this can aid in that. In terms of our energy, one may say "Hey, my illness makes me fatigued all the time" or "I had a full day of work, I'm too exhausted to go to yoga class!" Surprisingly this practice may allow you to feel better as you step out of the studio. In ties with metabolism, yoga enables the adrenal glands (little organs on top of your kidneys) to release cortisol. Cortisol is a steroid hormone in the body, that is highest in the morning when you wake up. It partners with epinephrine to allow your body to have energy and use your nutrients efficiently through your natural circadian rhythm. When you have adrenal fatigue, essentially your stressing out your body so much that you are constantly producing cortisol which is not what our bodies our meant to do (hence screwing up our circadian rhythm). Yoga attempts to regulate that process. It enables cortisol to be produced when its necessary, but with meditation and the beginning and end of a tough practice, it brings your levels down to a relaxed state and teaches you to carry that state throughout your whole day. You will find that you will be much less exhausted because your body is adapting to regulating cortisol levels as it should be!

4. Increased Flexibility & Lean Muscle Tone 

In yoga, you are completely relying on your own strength to hold your entire body up through a series of movements, stretches and positions. When you have proper form and posture while performing yoga (which it over time teaches you), your bones and joints are in proper alignment. This not only improves organ function since they are not convoluted in a position they are not supposed to be in due to poor posture or form, but this constant pressure on your bones from your own body holding itself up increases bone density dramatically. This in turn decreases the risk for osteoporosis. Additionally, yoga teaches you to bend and move in a way that increases flexibility, which decreases the risk of complication for those that have a connective tissue disease and decreases the risk of athletes tearing a tendon or ligament. It strengthens your soft tissue through this larger range of motion that ultimately allows your joints to be strong throughout all activities without giving way. The lean muscle created from this also increases your metabolism...see it all ties in again!

5. Positive Outlook, Coping Skills & Clarity

Need I say more? Mind, body and spirit is what yoga aims for you to be in tune with during your practice, and throughout your days. Your stress levels will decrease because it will force you to live in the moment. The classes I took part in made you think of a mantra before your practice that encouraged you whether it was a difficult workout or a relaxing restorative class. They always say come back to this moment, come back to this mantra, and come back to this breath when faced with adversity during your busy life.

What can I say, I love yoga so far! It can help me reach my fitness, health and mental goals in conjunction with going to my gym. I'm so excited for what's to come, and I hope some of you try it as well! If any of you are more advanced, feel free to comment on what your favorite type of practice is and some of your experiences.

Namaste :)