Can you guys believe 2017 is already over?! Also, can you believe I haven't written a blog post since August? Things really picked up and got busy these last few months, which definitely isn't a bad thing. I figured this would be an appropriate post to kick off writing some more content.

Like always, I enjoy reflecting on the last year to evaluate the good, the bad, what was accomplished, and what could be improved in the next year to come. The last few years, I struggled a lot with my health and saw it as an opportunity to grow both professionally and personally. In the back of my head, I couldn't help but wonder when things were finally going to turn around and become "good" again for me, however I tried to remain outwardly positive, powered through, and remembered that God always has a plan for each of us that we know nothing about.

This year has truly been my most prosperous year in my adult life, and I finally see how God's plan continues to unfold. Over the course of this week in my yoga classes, the beginning of our practice prompts us to set an intention before we begin the physical aspect of the hour. We have been prompted to reflect on 2017 and what we would like to make room for in 2018, or anything we may be hanging on to that doesn't serve us. I can't help but think of the many doubts I had this time last year about the future of my health and professional life, and how many of those doubts have been answered. Yesterday at the end of my yoga practice in savasana, my instructor told us that "peace is possible, but we must choose peace." Well, I'm finally choosing peace.

The recap...

I began this year unsure of...really, anything. The year started off with me reading The Universe Has Your Back by Gabrielle Bernstein on a plane, which aims to transform fear into faith to live a divinely guided life, and enable the readers to truly live in the moment. I learned the quote, "the wound is the place where light enters you." This was great symbolism for what was to come, and I didn't even know it at the time.

In February, after getting involved in the Lupus Foundation of America upon being diagnosed with lupus in 2016, I was invited to be an inaugural member of the LFA Community Ambassador Program in NYC. This was a true blessing, where I am able to speak on behalf of the foundation and go into a professional setting and share MY story with lupus and how important awareness and funding is for our future. From this, I've met incredibly motivating people who also have lupus, who I consider to be a second family. In February I also began practicing yoga, and have been bettering my mental and physical health ever since. This has been a great alternative to weight lifting, which is impossible for me to do on a bad lupus day. I have the opportunity to test my physical and mental limits every day, which is a unique opportunity.

In March, I found a new rheumatologist who actually listens to everything I say pertaining to my disease, and actually takes everything I say very seriously. This biggest challenge people with chronic illnesses have is people not believing their pain and symptoms, since most of the time we physically look healthy. My doctor and I have thus far built an amazing relationship. Lupus is a complex disease with an infinite amount of manifestations. I actually have hope for the outcome of my illness and treatment course knowing that we are working together. Although in October he found degeneration in my lumbar spine and sacroiliac joints from my inflammation (pretty much the only bad thing about 2017), he quickly wanted to help me and prescribed me weekly injections of anti-tumor necrosis factor biologics to halt this process in hope to give me a better quality of life.

In May, I was able to go on a fantastic vacation to Marco Island, FL with my family! Some much-needed relaxation prior to what was to come in the following months. I also started Team Wolf Pack for the Walk to End Lupus Now NYC, and we raised a new record since last year! (P.S., if any of you want to join in the fun next May, we're always accepting new team members!). This year, the LFA reported that they are putting $3.8 million towards stem cell research projects for lupus patients. This was a direct result all of YOUR efforts in raising awareness and fundraising. A cure is in sight, and we're not giving up until it happens!

June came around, and went on to change my life. I received my total knee replacement surgery at the ripe age of 23, after years of struggling with injury, lupus, infection and inflammation. After 7 surgeries and stem cell treatments, I was finally able to put it all behind me and live like a real 20-something. You can read details about my journey here. Now almost 7 months out, I am happy to report that I am walking around pain-free which used to be unthinkable, and I am challenging my new knee to new limits everyday. I also was able to teach myself how to run again at my six month mark which is unheard of. I could not be more thankful to Dr. Sculco and the Hospital for Special Surgery for taking on my unusual and complicated case with ease and confidence, and ultimately giving me my life back.

Dr. Sculco and myself following my life-changing surgery

In July, I celebrated three amazing years with my boyfriend, Joe. In the month before, he sat in the waiting room with my parents for ten hours while I had my surgery done and was experiencing some issues in the recovery room. If that's not the definition of love and support, then I don't know what is! I'm thankful for all he does and to have him with me in this journey through life.

August rolled around and I began by visiting Joe's family in Chicago, and I went and saw my first Cubs game! It's always a great time being with them and we always pick up right where we left off!

Joe and I playing tourist at the Bean in Chicago

At the end of that same month, after being accepted just before my knee replacement surgery, I was preparing to begin my first semester of graduate school at NYU. I feel that the timing of the acceptance was God's way of telling me "this is your time." Things completely turned around, and has been on an upward trend from there. NEVER in a million years did I think that I would be accepted to NYU for graduate school, that was always a "what if" in my head. But this year, I was accepted to the two year MPH program with a great scholarship, and am now a part of an extremely tight-knit cohort in the largest city with unbelievable opportunities right at our fingertips. These incredible people are from a variety of different backgrounds with different experiences; my world has totally opened up. They offer never-ending support to one another, and some have become my best friends. Life has changed since beginning this program, for the better, and every day I wake up still in disbelief and gratitude.

Some of my new MPH cohort of incredible people!

I found my true purpose professionally as well. I decided to concentrate in Healthcare Policy and Management in my MPH program, which will enable me to rid the healthcare system of inefficiencies either through management consulting, or the executive/strategy and operations division of a hospital system or pharmaceutical company. With this, I want to ultimately create a more impactful and patient-centered medical environment. As a patient who has been through a tremendous amount in my young adult life, this is so empowering to be in this position of management and execution. I can't wait to get out there in the world and begin to make a difference in the lives of many.

Every detail of 2017 has continued to surprise me and has allowed me to become closer to my faith. This time last year, I never would have thought I would be where I am today, but here I am! Having faith, not wavering from your goals, and gaining strength from negative experiences is what you need to gain success in life. Be open-minded and receptive to all experiences, knowing that theres a purpose for each and every one of them. I am eager to see what 2018 has to offer, 2017 will be a tough one to beat! Happy New Year everyone, and many blessings to come!

Our fourth annual Rockefeller Center Christmas Tree picture

Celebrating the end of the semester. We're a quarter of a way to being MPH's!

The Lupus Foundation of America Evening of Hope Gala 2017 with my amazing date!

Marco Island, FL

When I Was Forced to Grow Up

So, it is officially a month (well, more like 5 weeks) since my total knee replacement operation.
How am I doing?

According to many of the medical professionals I have spoken with, my recovery is nothing less than a miracle. Typically 6-8 months out, many people are complaining of lack of mobility, pain, decreased range of motion, stiffness, along with a multitude of other issues that would arise after you get a new joint put into your leg. It is expected to take an entire YEAR for an implant to actually feel like your knee again. Somehow at three weeks, I was strutting along without crutches! At two weeks, I was walking with one crutch. I think that when they got me up in the hospital the next day after surgery with the walker, my confidence grew exponentially and helped push this along. I continued on with the "nothing can stop me" attitude. Now although I still have some mild pain/achiness in my bones from the trauma of this surgery, I'm casually walking around (limiting the distance so I don't flare up like crazy), but many people have said that they would not have even noticed that I had surgery just a month ago. INSANE!

What's therapy like? 

My range of motion is past the 90 degree landmark, more like at 105 degrees, so I am starting to begin various activities and will be able to begin my strengthening soon (I have a baby quad from all the atrophying right after my surgery, so I may be a tiny bit self-conscious). Range of motion is huge when recovering from knee replacement surgery, or even any knee surgery for that matter, so that you can get back to carrying out daily life tasks and activities as you wish without scar tissue formation. Before surgery, I was only bending my knee at 112 degrees from the arthritis and deformity, so only a month out I am almost better off than I was before with many more months of healing to go! In therapy, I began hamstring curls, the stationary bike, squat tosses against the wall, one legged ball tosses on a nerf for balance, weighted straight leg raises and kick backs, resistance band exercises as well as heat, ice and ROM therapy. I also gained the balance on my feet to begin upper body workouts/lifts again in the gym, so I don't feel entirely like a lazy blob anymore. I actually learned something very interesting this week in therapy. Typically for an injury, a therapist places ice as well as stim which are small electrical pulses via pads on the skin to activate muscle and blood flow. For my knee replacement, I was wondering why I didn't have stim used like the rest of my surgeries. Apparently, there's a small risk that the electrical pulses can reach the implant, and my implant will actually CONDUCT electricity in my leg! Ya learn something new/crazy every day.

What's the word? 

Today, I had my follow up at the Hospital for Special Surgery with my surgeon as well as a routine rheumatologist appointment at NYU Langone to keep my lupus in check. My surgeon legitimately called me a miracle patient. After all I've been through, and after only a month recovery, he said I look as if I am a patient 6 months out of a total knee replacement surgery. I beat the odds with my mindset and I am honestly so proud of myself. I can begin strengthening as I can tolerate which will help me feel like a normal person again! He said that I had a special implant specifically designed for my knee, which also requires no cruciate (ACL and PCL) ligaments so I will never have to worry about injuring my knee. As you can see in the pictures above, I have a real joint space finally. I was bone on bone medially and laterally, and my knee cap was deteriorating. Now, my knee is aligned at the correct angles, and I have a full and mobile joint space. His success rate 20 years out of TKR is 92%. It is a dream come true following this journey. Dr. Sculco has truly changed my life forever.

On another note, my lupus is currently under control and I will continue with Plaquenil and Meloxicam (given my blood tests don't show anything). Both amazing and uplifting appointments, this never happens! Who am I?!

Noticeable Differences in My Daily Life and in Therapy:

1. No Actual Joint Pain or Crepitus (Crunchiness): Up until my TKR, I would always freak people out by having them feel my leg bending and straightening, and actually having it crunch right under their hand. Usually, it was even audible. As you can see in my x-rays, I was entirely bone-on-bone and had no joint space, which caused the bones to rub together while moving and caused that crunching feeling and sound. If I'm up and about walking around, this is NOT good and this signals that every time I moved my leg, I was essentially causing more damage that I could feel with each step. Now, the only leg pain I have is that of the surgery, where I get achiness in my femur (thigh bone) or tibia (shin bone), from them hammering the implant in just a month ago. My joint however has no crepitus and doesn't crunch/make noise, and my joint doesn't actually hurt to put pressure on! I finally have the joint space and support I never had.

2. Smooth Transitions and Fluid Motions: Similar to the point above, because I have this joint space and finished-off joint surfaces, my leg doesn't click and clunk all the time. My PT mentioned that in the past as I was recovering, from behind he was able to see the transition points of my leg straightening and bending as I walked across the room. The point he was trying to make is that there were catching and locking points that you can visually see from the damage and uneven surfaces in my joint. Now, it is one big fluid motion as I walk, with no visual difference between each flexion point (i.e. I walk like a normal person finally).

3. Proper Alignment of My Entire Leg: MY LEG IS STRAIGHT!!! For the last few years, I struggled so much with walking that I learned how to adapt to my new joint alignment. From the extensive arthritis and damage, I had a slight leg discrepancy and my leg bowed inward. I compensated for this by walking on the outside of my foot to avoid the pain with walking heel-to-toe, in addition to attempting to correct something that could not be corrected. Now I am in gait training, where I am learning to walk straight (heel-to-toe) again. It feels so wrong (from walking incorrectly for so long), but it feels so right (pain-free!!!!) This will in the end, help avoid injury to the rest of my body from overcompensation.

The month of May has certainly been a busy one, with vacation, celebrations, and more as the weather has warmed up. However, the most significant event has been my left total knee replacement that just took place last Friday on June 2nd, and the lengthy preparations that came with that.

Many of you may know my story, having seven prior surgeries to this and multiple autologous regenerative cellular (stem cell) therapies. This was all from a volleyball injury six years ago where I tore my ACL, MCL, medial meniscus and lateral meniscus...completely dislocating my joint. From my initial reconstructive surgery (not knowing then that I had lupus), I developed a serious post-operative staph infection that went septic. As I always say, I am forever grateful to have both my leg and my life today after that. This, following with various other surgeries, emergency wash outs, scar tissue removal and manipulation, a clear-out of all infected grafts a year later, and then starting all over again six months after that. My body has been through a war, and developed severe osteoarthritis in all three compartments of my knee. It was a perfect storm; the trauma of the injury, trauma of the surgeries, recurrent infections, and now my lupus discovery on top of it all just last year.

After the effects of my regenerative therapies (which I still believe are amazing and DO work for many!) had worn off and the degeneration quickly escalated, I knew that I had to see a joint specialist. I received one bone marrow aspirate concentrate treatment and four PRP injections, so I knew I was at my limit for how good my knee was going to get. I am grateful these therapies extended the life of my knee so that surgery was not needed until after I graduated from college, we were thrilled that it worked at all! Seeing my recent images however, all doctors involved with my case knew that my knee was just too far gone for any alternative treatment.

Since last summer, I noticed a sharp decline in my quality of life. It pained me to walk more than a block, and I would begin to limp from my inability to fully extend my leg due to the arthritis. Despite never doing barbell squats again, and altering my lower body workouts (for example, starting to practice yoga) I was still unable to bend my knee fully. I could not sit on my heels, I could not sit cross-legged, I was barely able to walk up a set of steps without holding a handrail, I could not turn over in bed, I could not do a simple quad stretch or kneel down to pick something off the ground. I simply adjusted and hinged from my hips and back, which is no way for a 23 year old to live. Not to mention, it will cause other problems with the constant compensation! From the condition I was in, which was my new normal, I was not myself. Rather than my previous surgeries and physical therapy sessions where my goal was to "play volleyball again" or "squat 250 pounds again," this pursuit was purely out of desperation to have a decent quality of life again.

In December of 2016, I went forward with this and sought out a joint arthroplasty specialist. I will not mention the hospital or name of the surgeon, however he truly had only his ego in mind. This doctor blatantly told me, "Yes, you need a total knee replacement. No, I will not help you." This was given my history of infection, my young age, and my history of lupus. There was a lot at risk. He verbatim told me that I "just have to learn to live with my disability until I'm in my 30s." Excuse me, what?! This is unacceptable, and despite your oath as a doctor, you are causing more harm and more distress to my body by refusing me treatment. In the moment, I was so upset that I broke down crying in front of him, hopeless that I will never find relief of my condition. This is the only thing that can help me, but I cannot have it. With his smirk, he left, and I was fooled into defeat thinking that I have to go on living this way for at least a decade more.


When things turned around....


Fast forward to March of 2017. I come home from a yoga class in tears. I found something that I love and is easier on my joints, but I am still having intense pain and reduced joint function. I have already altered my lifestyle tremendously, you know, to "learn to live with my disability." No relief, just more and more agony as the days go on. My parents were done seeing me like this, and my mom basically told me hey, this is one doctor who is clearly just looking out for himself, who says you can't get another opinion? She was right, the way he treated me was inexcusable. Finally, through lengthy research, my dad found Dr. Thomas Sculco, Surgeon in Chief Emeritus at Hospital for Special Surgery right over the river in New York City.

I called, expecting to be denied as a new patient because this is a very important man. Luckily they directed me to send my current x-rays over to their office (a policy they have before making new appointments) and they will have him take a look at them. They mentioned it may take some time, because he is backed up from being on conferences, but they will definitely let me know one way or another.

Through many daily prayers, I received a phone call from their office pertaining to making an appointment. The woman on the other end of the line said "he definitely wants to see you, how soon can you come in?" And just like that, with this extremely busy man, I got an appointment within one week. God was really on my side that day.

When I met with him on March 23rd, I received many odd looks from people because I looked so young to be one of Dr. Sculco's patients. He is a knee and hip arthroplasty specialist, and has performed more than 20,000 hip and knee replacements to date. I first gave a brief synopsis to the nurse, and then again to a fellow that is training with him (lucky guy). The fellow that met with us asked me many questions, and verified that I definitely want this because my quality of life is suffering, not just because I can't go run a marathon and am upset about it.

He went outside the room and returned with Dr. Sculco, who was needless to say shocked at the story he heard. Dr. Sculco then took the time to go over every single angle of my x-rays with my mom and I. This was when I learned that I didn't just have arthritis, every compartment in my knee is degenerating day-by-day. My knee is bowing inward and has deformity. My tibial plateau (the top of my shin bone where my meniscus is), has flattened out, causing bone spurs to pierce the collateral ligaments (the side stabilizers) of my knee and causing further injury and irritation. My meniscus has almost completely degenerated, and a portion has been expelled out of the joint space due to my "bone-on-bone" condition. My patella (knee cap) was pre-osteoporotic, meaning it was decalcifying and degenerating to nothing. I had no cartilage to cushion my joint. Quite frankly, it was just a mess. He said to us that if we did not take action in seeking out help, my knee joint itself would actually fuse within the next few years, which is something that I would not be able to come back properly from. I asked him about his concerns with my previous issues regarding lupus and infection, and he gave me the most confident response. He said yes, there are risks, but went on and explained his game plan regarding new medications, placing antibiotics in the cement for my implants, and what measures they take at the Hospital for Special Surgery to control autoimmune issues and prevent infection. To this day, they have the lowest infection rate of any hospital in the country. After over an hour spent with him, I gave him a hug and thanked him for finally giving me hope after this six year journey.


The big day...


HSS is extremely efficient in adequately preparing their patients for surgery. About two and a half weeks prior to my surgery on June 2nd, I went to the hospital for my pre-surgical screening day. That day, I met with a therapist who gave me an itinerary for my recovery, I had various tests performed to assure I was in good health for the surgery, I attended a joint replacement patient education class given by one of the nurses, and I met with an internist/rheumatologist and an infectious disease doctor to come up with a game plan to prepare me for a successful surgery given my situation. I had a whole team in my corner! Now I realized this was actually happening.

Sporting my "Optimist" shirt on my pre-surgical screening and education day!

After celebrating my boyfriend graduating with his Masters degree and enjoying a vacation to Marco Island, Florida with my family, it was finally time. I was worried naturally about my prior health issues, but I was at peace with the operation because of how perfect this doctor was and how compassionate, intelligent and empathetic he was. You can read more about me advocating for my health journey here. On June 2nd, I marched my way into HSS for the last time with my damaged knee, only to crutch out of there with a brand new one.

It was a long day, mostly because nothing can ever go completely smoothly with me. The surgery was a complete success though. Dr. Sculco said that when he actually got to see the inside of my joint, it was just so fatigued and damaged from the years of trauma and disease, that he was very happy we went through with this. They put me under sedation, I was completely out however I was able to breathe on my own and wake up much easier from the surgery. In addition to this, I had a epidural catheter placed right in my low back, which administered pain medication directly to my leg for the first 24 hours as well as administering a spinal block through the surgery. Although this helped tremendously with the pain post-operatively, I was paralyzed from the waist down. And of course, I took forever and about 6 hours later, I came out of it and gained feeling and function back in my lower half. *insert eye roll here*

I did have to spend a few days in the hospital, where they monitored my vitals, infection risk, lupus flare ups, incision site etc. I also had a drain with two tubes in the side of my knee to discharge any excess fluid or blood around the joint for the first 24-48 hours. This helped SO much with post-operative swelling and pain. Physical therapists also worked with me to get up and walking first with a walker, and then with crutches as I progressed to be discharged. My experience there was nothing short of phenomenal (even the food!) and every single staff member I came across wanted to do their best to make me comfortable and look out for me. I am so grateful to have worked with such an awesome and passionate team all the way through from start to finish.

Night 1: after being discharged from the PACU after 6 hours

Day 2 post-operatively, right after the drains were removed from the side of my knee.

Now that I have been home for about a week, I have made stunning progress that I did not expect whatsoever. I have almost no more swelling now, my knee is perfectly aligned, and I have zero joint pain. The discomfort I have experienced the most was in my femur and tibia, more of a deep ache from the "carpentry" (aka hammering the implants into my existing bones). Despite some flare ups from lupus reacting to the trauma of surgery, I have progressed through a week of home physical therapy, practicing activities of daily living and range of motion stretches, and I am now released to outpatient physical therapy. Within this week, I am down to walking with one crutch, I am already bending my leg to 93 degrees (without anymore crunching), and I have only about two more degrees to go until I have full extension! I was actually at minus five degrees of extension before my surgery, so I am already better off. The strength will come as the weeks go on, and I will become more and more confident with my leg.

Me and the miracle worker himself, Dr. Sculco!!

As I reflect back and try to tame my impatient desire to get up and go do everything again, I applaud my progress within just this week and how I ALREADY feel the benefit to this surgery. I feel that because of all the terrible and frightening experiences I have been through, in addition to the expertise of Dr. Sculco, recovering from this surgery has so far been a walk in the park in the grand scheme of things. I'm used to excruciating pain, only to MAYBE have relief. Now, it's a sure-fire thing! I am certainly very blessed to have learned so much from my journey, but to now have it end better than anyone could have imagined. Thank you from the bottom of my heart to Dr. Sculco, who has confidently taken on a hopeless case and turned it around into a success story. I am so eager to see where I will end up in the weeks, months, and decades to come.

Hospital selfie with my saint of a boyfriend, Joe.

 

All my life being an athlete, I knew protein was a must. I eat a lot of protein through my diet, being that I follow a Paleolithic lifestyle for the most part. However, I always needed a little extra boost after the gym or in my morning, on-the-go routine in order to achieve optimal protein levels in my body and to kickstart my metabolism.

Being that I had vague and undiagnosed autoimmune issues my whole life, but now only recently being diagnosed with lupus, I FINALLY noticed the tie to my gut issues that came along with it. I would buy my protein off of bodybuilding.com, and try to purchase the largest container with a massive amount of protein per serving. Many of these brands made me nauseous and bloated, but I sucked it up thinking, "well this is just part of the process, I suppose."

Actually, it wasn't. Nobody I knew felt that way after what was supposed to be a nutritious protein shake, and it did the opposite in my body of what it was intended to do. It most likely contributed to leaky-gut syndrome and causing more unhealthy inflammation within my body. After becoming immersed in my nutrition-conscious lifestyle, I did extensive research and had much insight on what food/nutrients and NATURAL supplements I was supposed to be implementing in my diet.

Enter Ancient Nutrition Bone Broth Protein by Dr. Axe. Many of these other "fitness and body building" proteins I have tried in the past have added ingredients that are artificial, to essentially put the most amount of protein they can into the smallest serving possible. That doesn't cut it with me, and I want something completely pure going into my body since you should be gaining protein from natural ingredients. This product is paleo- and gut-friendly, free of all artificial ingredients, non GMO, gluten- nut- soy- grain- and dairy-free. All that could be possible allergens or produce unnecessary added stress on the gut. There is 1 gram of sugar, which comes form the natural vanilla extract flavoring (0 grams if you get the "pure" flavor), 2 grams of carbohydrates (not from simple starches which is key!), 98 calories per serving, 20 grams of protein per serving, and has pure ingredients such as the natural vanilla flavoring and monk fruit extract. One serving is only one scoop as well, which gives you more for your money. Amazingly, it is still absolutely delicious and goes perfectly (and lightly) into any fruit/vegetable smoothie or alone in some almond or coconut milk.

The most notable ingredient is Chicken Bone Broth Protein Concentrate. This is how this product obtains the 20 grams of protein in it, literally from an animal that God put on this earth. And as it should be! No more synthetics or artificial ingredients and let me tell you, my gut is thanking me for it! No more bloating or nausea, just positive results. This product advertises supporting a healthy gut, supporting a healthy (not overactive) inflammatory response, supports healthy skin and aging, supports a healthy immune system, supports healthy cells, a healthy liver, and healthy detoxification, supports a healthy metabolism, and supports muscles, bones and joints. In the last week, I received a compliment from a family member for looking "brighter," which I'm going to assume is a consequence of taking this supplement every day since it has been the only recent change in my lifestyle.

So, what is this "bone broth protein," and how does it work? 

Bone broth has been a huge craze in the holistic health and nutrition world, and I first learned of it through the Autoimmune Wellness blog. This can be made as a stock and you may incorporate it into many meals, however may be very inconvenient and can take days on end to make. This is why I was so excited that it was made into a natural powder through Ancient Nutrition!

Bone broth is made through boiling the bones of any vertebrate (in this case, chicken) and obtaining nutrients from the superficial bone, bone marrow, tendons and ligamentous structures that one would not typically ingest and eat on their own. This stock solution is rich in calcium (without eating or drinking dairy that is tough on the gut), magnesium (for proper muscle growth and function), phosphorous, and is rich in the amino acids, proline and glycine which is vital for collagenous structures (the glue that holds our bodies together).

Why is collagen so much more important than these other nutrients?

Collagen, which lines our joints, muscles, fascia, organs, skin, hair, etc., etc., is a strong structure that has criss-crossing, rope-like fibers embedded into a gel matrix (typically the synovium in the joints) to make a lining around these systems that is durable and long-lasting. With many disease processes such as inflammation from autoimmunity or infections, or just simple aging and the shortening of our telomeres, our collagen sources in a specific region of the body may be depleted. This could ultimately result in inefficient bodily processes such as digestion or atherosclerosis, or may lead to stiff joints, brittle hair, osteoporosis, dull/wrinkled skin, or weak muscles being quickly replaced with fat.

Glycine and proline, found predominantly in bone broth solutions, are one of the main building blocks for collagen and is vital in many of these processes. They are found in the enzymes and proteins solely of living animals, and Dr. Axe mentions that in the traditional western diet, individuals consume only about 2 grams of glycine from their diets daily. Now, it is recommended as a supplement for individuals recovering from toxic treatments/surgery or a stressful disease since it is so crucial in building the body on a molecular level. These microscopic building blocks can heal anything from massive injuries or heal arteries or nerves damaged from systemic inflammation or infection (which is of huge interest to me). They can actually release human growth hormone from the pituitary gland and raise creatine levels to allow repair, growth, and sustained function of all tissues and muscles!

As seen in the diagram, the small glycine and proline amino acids (to the right) make up the entire collagen fiber structure

According to The Paleo Mom, glycine can aid in even controlling the most vicious autoimmune processes. It has been discovered that it supports HEALTHY and not OVERACTIVE immune function, inhibiting the inflammatory cells that are floating around the body for no apparent reason. So not only does proline and glycine heal the body from injury, inflammation and disease, but it may actually help prevent it as well!

This is why bone broth is known as a "superfood." While people who eat a high-protein diet or take regular collagen supplements can achieve satisfactory levels of these amino acids, proline and glycine are not as isolated as they would be from slow cooking bony structures over many hours. The fact that this is in an all natural, easy-to-use, and artificial ingredient-free powder, I can now achieve those benefits without the hassle of making bone broth stock. I find this important in my life since I have a musculoskeletal and a systemic disease, where I literally have no idea what is going on inside of me unless I am in intense pain. My collagen supply is being directly attacked constantly! So, this bone broth protein powder that is allergen-free for my gut is truly a blessing.

If anyone else has uses and recipes for this protein powder, please share the wealth! I hope that anyone who tries this has great success :)

March 29, 2017: Officially one year since my diagnosis of lupus

I MADE IT

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 :)