Where I Have Been

Woah! It has been a long time since I shared words, experiences, joy, pain and Reflectinspiration with you. I had all the intentions in the world to write more consistently, to share more openly, and to inspire more passionately. And while I could sit here and list a litany of excuses some of which include my own laziness; the daily demands of life with work and school (yes, I am back in school, more on that later), but alas I digress. Excuses do not get us anywhere! So, instead of making them, I am going to own my shortcomings.

I think it is appropriate to first apologize to myself for not leading and showing my true authentic self. Second, I apologize to all of you for not showing my vulnerabilities, and more so for neglecting my previously promised weekly dialogue. Now, with those apologies out of the way, I would like to offer a new and revived vow of committing to a weekly post on my journey—good, bad, indifferent or anything else. Aside from holding myself accountable, I want to enlist your support in holding me accountable. Remember in any community, we only get stronger by lifting up those around us.

Let me quickly tell you where I have been and where I am going. I am now one year deep into a Master’s in Public Health with a focus on Lifestyle Management at Loma Linda University. Scleroderma provided me with a wake up call to help others create a better life in an effort to prevent chronic illness; but also to help those fighting the battle of chronic illness. By the way, I also have straight A’s [yes, I am a school nerd].

The next piece of news is that I registered for a second consecutive year to run the Los Angeles Marathon in order to raise awareness for Scleroderma and money for the Southern California Scleroderma Foundation. Not only am I asking for people’s financial support, but also to help get the word out. If you live local to the race, I am asking you to come out and cheer me on as well as all the other amazing athletes as we conquer this feat. If you are not local, please share my fundraising link with anyone and everyone you know and follow my journey on social media.

781921_271819396_Medium

On a personal note, aside from creating awareness and raising funds to support patients, I am trying to conquer my goal of running the marathon in under four hours. To be more specific, I am looking to destroy my time of 4:21 in my first ever marathon in 2018 and complete my 2ndmarathon in 3 hours and 45 minutes or less!

Thank you again for your compassion and support. I look forward to my newly committed journey with you. We all have our good days and our bad days. We all struggle and we all need the support of others. Let’s continue to battle together in the tough times and celebrate one another in all the good times. Stay tuned as we continue our commitment to movement and positive thinking.

Know Your Why

When I set out to run the Los Angeles Marathon, I did it for many reasons. Probably the three most significant reasons were to inspire others with Scleroderma and chronic illness to live their life and be active. The second reason being to prove to myself that amidst my own pain and discomfort, I could still be an athlete and be successful. And the third reason was to make my rock and number 1 supporter Arielle, proud of her husband. But it wasn’t until today that this whole thing really started to take shape when my wife asked me today why I decided to commit to running the LA Marathon.

See, the reason she brought the question up is because I have not been true to myself and even to you. While I signed up to achieve this display of athleticism, I have not fully committed to what it takes to get there. Yes, I go out on runs, but am I doing what I REALLY need to be doing to not only complete it, but also finish the race uninjured? Contrary to what you read in my blog and see in my fitness photos on social media, while all of those platforms do convey the truth, they are not the complete picture.

On various social platforms and outlets, I am an advocate for a life that incorporates movement and fitness. I want people not to be defined by their illness or physical conditions. Instead, I want them to fight and define the illness they have by living life fully and battling everyday. But alas, I am human. I too get depressed, make excuses or I just sit because of the joint pain and tightness in my skin. Recently, a wave of discouragement hit me as I looked at a headshot photo that was taken of me at my for my job at Equinox Fitness Clubs. The photo, which should have highlighted what a strong, handsome man I have continued to become as I approach 40 years of age, to me came
across as something different. What I saw instead was a face that has completely changed over the years becoming tighter, thinner, and its features getting smaller.

Me

 

 

 

 

 

 

 

 
Witnessing my body change from my face, to my hands, to my feet makes me sad. It makes me not want to run, let alone do anything. The physical and emotional hurt at   times can be overwhelming, making it hard to cope or maintain gusto. So, while I may not turn to something addictive like food (overeating), drugs or alcohol, I turn to something worse; laziness and lack of focus. This recent self-realization has me wondering, how can I be this voice for others? How can I be an advocate for a life worth living? Well, I believe the answer is simple. Having someone in your corner who pushes you and knows what you are capable of. Sometimes just asking a tiny question can put you back on track. Today, that question came from my wife in the form of, Why did you decide to run the marathon?

After that question and seeing the lack of alignment between words and actions, I ran 5 miles then scheduled the rest of my runs this week. When you are sad, down and question yourself, who is there to push you? Who is the person you know will ask you that one important question and get your butt into gear? If you do not have that person, let me know and I will be that person for you.

To all my warriors out there, it is ok to be sad. It is ok to ask why and to know not every day is going to be the best day. The important thing to remember when in this rut is that each day is YOUR day. You have a choice to be keep fighting, or you can choose to lose slowly. Choose the fight, it is worth it. Find someone to ask that one important question to hold you accountable and keep you on track. Remember, we write the definition of life, not the other way around.

Join me as I continue not only mine, but OUR journey to the LA Marathon finish line.

 

 

 

 

 

 

A Journey Begins

Welcome to week one of a weekly multi-part series on my journey to run and complete the Los Angeles Marathon. I decided just after the New Year that I was going to train, run, and complete the 26.2 mile pavement course from Dodger Stadium to the “Sea,” which culminates in Santa Monica, CA. In just shy of 3-months of training, on March 18th, 2018, I will make my marathon debut!

Sneakers

So why do it? My journey was created to inspire and motivate a community of warriors and fighters; some who are physically unable to walk, get out bed or let alone run a single mile. This community of amazing individuals who fight daily to grasp for cups or pens as their fingers have started to curl due to a connective tissue disease that is slowly turning them into stone. A community of fighters that have trouble catching their breath walking up a flight of stairs because Scleroderma has found its way into their lungs, causing pulmonary fibrosis and pulmonary hypertension. My desire to run was in an effort to bring hope to this community; to show others with the same condition as me that even though you may not be able to run a marathon, you are more than just a disease. I want to inspire movement, I want to inspire others to rise up and live life to the best of their ability, to face adversity, and kick it in its teeth.

As Scleroderma patients, people who have autoimmune or other chronic illnesses, we so often fall prey to being defined by the disease we have. At times, the weakness and stiffness those afflicted with autoimmunity have hold us back from living, moving, and thriving in the manners in which we’d like. We succumb to the voice inside our head telling us to lay down, sit on the couch, or skip our workout. And I get it. I get railroaded by exhaustion and pain too, but I am trying everyday to fight it in an effort to fight for myself.

We are frightened by our mortality. Believe me I know, I have shed many tears and shared my thoughts with those around me.

The truth is, my journey honestly scares me. I too wake up in the morning, tired, stiff and uncomfortable. I have gone on 2, 3 and 5 mile runs where my knees ache and my muscles fatigue just as my foot hits the pavement on step number one. I am worried and nervous that this odyssey in which I have so eagerly embarked upon could quickly come to an end. And not because of my mind, but because my ever deteriorating body will sideline me.

I have always been an athlete; I wrestled in college, played soccer in high school, and enjoy doing fitness related things. The last time I really did something that was a true test of an athlete’s mind and will was about 4 years ago. It was when I completed the Napa Ragner Relay Race with my then girlfriend and now wife, Arielle. Over the course of three legs that I ran, each spanning over 24 hours, on a team of 11 other people, I ran a total of 17 miles. Not only did I do well, I crushed my distances in mile paces less than 8 minutes, ultimately earning the admiration of Arielle.

IMG_2435

Oh boy, did that 24-hour ordeal hurt at times. Little did I know that at this time my body was already slowly beginning to attack itself because of Scleroderma (which at the time I had yet to be diagnosed). As the next few years went on, my hands and joints began to show signs of the disease. It wasn’t until April of 2017 that my rheumatologist confirmed my diagnosis. Now as my wife pushes me to go to the gym, I often opt out due to my lethargy and tightness in my skin and body, thereby giving in to my autoimmunity.

This journey, while it is in an effort to motivate and inspire others to stay or become more active, it is also a way to educate and inform others about Scleroderma and to raise money for the Southern California Scleroderma Foundation. But that is not all. This is also for me. It is a chance for me to prove to myself that I am more than this illness. I am a fighter, I am a warrior, I am an athlete, and most of all I am Scleroderma.

Please join me over the next two months as I share my successes and my failures right here in my blog.

Better yet, learn more about this rare illness, and if you feel so inclined donate to my fundraising page to help bring patient support, advocacy and other resources to so many brave warriors in this community. Run4

Push Through The Ouch

We all know that person who complains about working out because they had a long day at work, are tired, have to get home to the kids, or even they’re super sore from the gym the day before. Perhaps this has been you from time to time—rattling off publically your inner debate: Should I got to the gym? Stay home? Go home? Hell, should I just go to the bar or open a bottle of wine?

And there are those people. You know ‘those’ people. The ones who seem to have it so easy, make no excuses—hit the gym day in, and day out; all while making it look easy. Granted, we cannot make assumptions about anyone and his/her life. But what I can say is this; as someone battling a chronic illness, my struggle is vastly different than others.

There is no escaping the pain. The aches. The tightness. The overwhelming fatigue. It never, ever goes away. Sometimes, it gets to the point where all I want to do when the alarm clock rings in the morning is just stay in bed all day. Frankly, at this point, when presented with the opportunity to go to the gym, I’d much prefer to lay on the couch and watch TV because it will not hurt as much.

Daily when my alarm goes off, I lift my arms over my head and squeeze my fists together for that all so famous morning stretch and yawn. Reaching above my head as high as I can, my skin tight, it feels as if it is literally tearing away from my body at my shoulders. My hands are so tight that only my pinky can touch my palm; so forget making a fist. I step down on the floor, my knees ache, and my lips and mouth so taut, as I try to stretch my mouth apart to get the morning yawn in. As I think about my day ahead the last thing on my mind is a workout at the gym—I am just trying to get out of bed!

Over the Thanksgiving weekend, Arielle and I decided to try out a new Crossfit gym in the neighborhood. So, with much trepidation we embarked on the 5-minute drive down to Angeleno Crossfit. My mind was racing, worrying about the impeding WOD and how I would manage. My hands were already stiff and inflamed with a band-aid neatly wrapped around my right index finger that housed a 6-week-old digital ulcer. We arrived at the box and headed in for the workout. After the warm up, the coach give us the rundown; 30 air squats, 19 power cleans, 7 strict pull-ups and a 400M run. The prescription (Rx) called for 6 times in a 38-minute block. Having not taken a Crossfit class in about 2 years, nor performing power cleans since college (almost 20 years ago), I scaled back on weight and had a go.

Four rounds in I was crushing it! While my hands and forearms were fatiguing, I was determined to push through. I looked over at my cute wife covered in white chalk and I thought, I cannot let her see me give up. I am her knight in shining armor, her hero, her MAN.

Hand

Then came round five and I was about 10 power cleans in when something just did not feel right with the inside of my thumbs on both hands. I kept going and got my 19 reps—woo freaking hoo. As I transitioned to do my pull ups on the rig, I glanced down at my thumbs and to my shock, I saw the skin ripped clear off. The top layer of my skin separated on both sides, revealing raw skin about the size of a dime. If you have ever ripped your skin at the top layer, or had a blister open up prematurely to expose young, fresh new skin, “OUCH.” The pain is then magnified 10 fold once you run them under water with soap. Needless to say, after five sets I had to call it quits. While I was not going to Rx the workout based on prescribed weight, I was on track to complete all 6 rounds in under the 38-minute time marker.

Let’s fast-forward a week.

I am at my new job as a Group Fitness Manager for Equinox in Palos Verdes. A main benefit of my job, I get to wear workout gear all day long. Wait, that is not really the main benefit. The true perk is that I can workout everyday if I wanted and do not really have an excuse why I can’t or shouldn’t. I have a free membership and a plethora of fitness equipment at my disposal. I put my new wireless Beats headphones on, had a sick new playlist ready to go and had my comfy sneakers on, so I got my butt up from my desk chair and headed to the treadmill. I decided to run for 12 minutes and do some weight lifting. Halfway through my cardio session, my toes were numb because I was slightly chilled, thank you Raynaud’s Syndrome.

My knees started to ache and I just felt tight all over. Cardiovascular-wsie, I was great but still I felt horrid and pushed through before heading to the weight floor.

I decided to do a circuit of bench press, push-ups and burpees. Albeit, since I have not been lifting much my strength has decreased. But that was not the main issue. I was having trouble hoisting the weight above my chest because my shoulders and elbows were screaming with fatigue and my forearms were yelling at me with their tightness. Best of all, I got to the push-ups and burpees and my fingers were crying in agony because the texture of the weight room floor felt like I was pressing down on pins and needles.

I completed 3 sets and then did one more exercise and struggled. I texted my wife almost in tears because I felt defeated; yet at the same time victorious because I moved my body, I lifted some weight, and I ran and mile and a half. While my workout only last 35 minutes, it was not a defeat. It was glorious and most of all educational. It taught me the importance of daily movement. About persevering through the obstacle of “OUCH.” Now, we are not talking ouch as in a broken wrist ouch, but rather those ouches of aches and pains that are not going to cause us a major injury. The schooling I received was that the more I work—the more I condition my body and the response it is going to have those stimuli. I realized I had not been true to the importance of self-care and exercise, because honestly I have not been consistently working out in months.

That workout, which would be considered embarrassing to my fellow fitness brethren, was three days ago. What has happened since is more of an awakening. Arielle and I have joined a Crossfit near our house (Studio City Crossfit). It was nothing against Angeleno, which was a great experience, it was just not for us. Furthermore, I have committed to going 2 days a week, one cardio WOD and one Crossfit WOD. Wait, there is more.

This morning an amazing trainer at Equinox Palos Verdes, Rob Decker and I did a 45-minute out on the strength floor after I taught a cycling class. My hands and fingers wrestled to wrap completely around the barbell, my forearms were tight and other joints ached; but I did not let Scleroderma define what I would accomplish today. I decided what I was going to accomplish and I WON. No sad text message followed to my wife, instead an Instagram post, relishing in my daily championship.

workout.jpg

So my friends, our struggle is real and no one should ever sugar coat what you feel and how you feel when it comes to your chronic illness, disease or whatever life may throw at you. However, our lives become richer when we are able to live each day to the fullest and possibly even feel better in our skin (both literally and figuratively), if we commit to movement. It may feel like a constant uphill battle, but if you push through the “ouch,” day-by-day, you will feel better and your body will thank you for it. The minute you decide to stay in bed or on the couch, that’s the moment you lose and I want you to always be win

Food For Thought

We all have a relationship with food. For some of us our relationship with food is a positive one. In this respect, we might see food as something that is a source of comfort, it can also be viewed as a way to connect socially, it may bring us joy and happiness and for others it is a sensory experience. On the flip side, some people have a negative view of food. Some do not enjoy food to the degree that a “foodie” would, others over eat, under eat or have another form of disorder because food has always been viewed as a coping mechanism or it was something one uses as a sense of control. For me, food is one of pleasure, comfort, sensory experience and sustenance.

You would think that being in the fitness profession, my eating habits would be pristine. I often think of the stereotypes that fitness people are associated with when it comes to food; we consume salad, eggs, chicken, turkey, fish and brown rice. When I begin to talk to people in my classes or that know me in general, one of the first things they say to me as it relates to diet is “Oh, you must be such a clean eater”. While I want my response to be of course I am, so as to not tarnish the public perception of fitness professionals, the truth of the matter is my diet has always been far from clean.

When I was in high school and college, I was a multi-sport athlete. The sport to which I call my “bread and butter”(no pun intended here) was wrestling. If you know anything about the sport, it is extremely physically demanding but it also revolves around making weight and weight loss. Most specifically the goal for a majority of wrestlers is to try and compete in the lowest weight class possible. Throughout my entire wrestling career, making weight was NEVER my forte. I loved food, and by loving food we are not talking about healthy food. As a matter of fact, most of my adolescence and late teenage years I lived on pizza, chicken parmesan and Chinese food. Wait, that is not entirely true, my poor dietary habits continued into my adult life too.

Growing up, my mom was not what one would call “Julia Child.” While she tried and was well intended, her culinary abilities or understanding of healthy eating was not her strength. I grew up on diet soda, sugary goodies, pasta, carbs, gluten, dairy, etc. I knew no better. I was scared to eat sushi in my early twenties because we never had it growing up. I was used to my steak being charred well-done on a charcoal bbq. Needless to say when I went to culinary school, my eyes, mouth and stomach were opened to new adventures.

So what does this all mean, aside from loving food. Even with my culinary education, for the past countless years I have lived off of fried and processed foods, Starbucks breakfast sandwiches (the sausage one was my go to), gluten, dairy, nightshade vegetables and very little greens or low glycemic fruit. It was not until April of this year when my eyes were truly open to how food might play a role in my health. Don’t get me wrong, I always knew it was important to eat “healthy” but what did that look like for me. I was always mentally willing to try some new way of eating healthy, especially when Arielle wanted to do the Whole 30 or Paleo. The problem was my willpower. It was never as strong as hers. Maybe I just loved all the “good” stuff too much. Maybe I was emotionally weak that I was not fully willing to commit. Maybe I did not see it as truly important.

Well, it’s funny how your health can affect even the things you love so dear, like food and the mental approach you have to such habits such as eating. Hit with the news of my newly diagnosed autoimmune condition, Scleroderma, I began researching anything and everything I could to see what I could do to slow the disease, or better yet put it into remission. A lot of what I found was related to food. I started reading about leaky gut and the effect certain foods like gluten, dairy and nightshade vegetables have on the body. I watched documentaries like What The Health, a plant based diet theory that was definitely a bit biased. I read books by some of the foremost experts when it comes to Functional Medicine (i.e. Dr. Amy Meyers). The result: I was amazed and shocked to see that a lot of what we put into our bodies is not only bad for us when it comes to weight gain or loss, athletic performance, but most of all it can seriously have a negative impact on our immune system.

Certain foods can actually cause autoimmunity or at least exacerbate conditions and cause inflammation throughout the body! Willing to do anything and everything I could to fight my disease and get to the root problem of my autoimmunity, I turned to a functional medicine professional. This might not be for everyone because some people prefer traditional medicine and, it is also very expensive. The latter was my biggest concern. After talking it over with Arielle, we decided it needed to be done.

Upon the second visit to my functional doctors’ office, my entire relationship with food was about to change. First, I was given a three-week protocol that included supplements and shakes to help cleanse my liver and process the garbage out. Then attached to my reading packet which was well, as a list of food I could consume, but most of all it was a very restrictive diet.

DinnerThe diet I was about to embark upon was somewhat of a cross between Plant-Based and Paleo. One might think that does not seem that bad, but wait it gets better. So what was I able to eat – chicken, turkey, fish, lamb, spinach, brussels, carrots, sweet potatoes, onions, cauliflower, broccoli and the like. Sounds ok so far, I guess. I start to read the list of what I do not get to put into my mouth – beans, all grains like rice, quinoa, couscous, etc., red meat, corn, eggs, tomatoes, eggplant, coffee, sugars, soy, mushrooms, nightshades, dairy, gluten, wheat, nuts including nut butters like peanut butter and bye-bye to my favorite no wine.

CookWhat was I going to do? Cook everything? Yes indeed. And so meal prep began every Sunday for about 3-5 hours for Arielle and me. Hard was not even the word to describe the process. I was hungry, cranky, I found myself snapping at people for no reason. I became “THAT” guest in a restaurant modifying my entire meal beyond recognition. The very type of person that to me as a manager and all my staff in the restaurants I used to run, was a person we would make fun of and complain about. And, here I was apologizing to any waiter taking my order, feeling hyper embarrassed. I had to make sure I was timing my shakes and supplement regimen diligently before my meals. I took extra special care to ensure I packed food appropriately so that I would stay as satiated as I could during the day. I complained to Arielle day after day that I wanted rice or eggs for breakfast –since now I was having Aidell’s Chicken and Apple Sausage by itself every morning.

I found my willpower, mental fortitude and stomach tested for 21 days. Some days were better than others. So what happened, believe it or not I began to feel a bit better. My energy in the morning was substantially greater than it had previously been. My hands which for the past 3 years have been tight to the point I cannot make a complete fist due to the Scleroderma started to feel less inflamed and began to flex better. I lost about 10 pounds (this makes Arielle a bit angry at me, so please do not tell her). Without too much information, my bowel movements were better and most of all I felt like I was taking control. When I start to think about the root cause of my autoimmunity, I think about the “burning of the candle at both ends” schedule I have always kept, the stress in my life and now my diet. I get angry at myself for not listening to my wife when she wanted me to improve my eating habits or just doing what I knew was right when it came to nutrition. I get disappointed with myself for not using my culinary education to nourish my body better. I find myself frustrated that I ALONE, caused harm to my body. But with all of that self-hatred comes self-love. With all the mistakes of the past, comes the chance to make improvements. To love my body and remembering it truly is a temple and that it needs the right fuel in order to function properly. I have inspired myself through this 21-day journey to heal myself from the inside out. To treat my gut the way I would my face when I wash and moisturize it. When I cut myself and put healing ointment and a band-aid on it because I want it to get better Now I must heal my gut in order to heal the rest of my body that is attacked and wreaked havoc on itself.

So what is next you might ask now that my 3-week cleanse is complete? I have just had a food sensitivity test and cross reactivity blood test done in order to see exactly what foods my body has antibodies to so that I can eliminate them forever. I will update you on that once the results come back in about 10 days. In the meantime, evaluate your own relationship with food. See what you eat and why you eat it. Try for 3 weeks to just take 2 things we all know might be harmful out of your diet like gluten and diary. Let me know what happens. Just eliminating those two things a lot might make you feel like a million bucks.

Things Hurt

For this entry I decided to write a poem. If you asked my friends from high school about my skills as a poet, they would for sure tell you that I am no Maya Angelou. However, I was inspired to convey my thoughts on facing whatever it is that keeps you from fighting in something other than a narrative. Thanks to the wife, whom is an LAUSD English teacher and teaches writing to America’s youth for some tips and pointers. Hope you like it!

 

Buzz, buzz, buzz, goes the alarm

You shift your body

All you feel is tight

Make a fist, extend your arm, there is the pain

THINGS HURT, YOU’RE TIRED, KEEP MOVING says your brain

Climb out of bed

Plant your feet on the floor

Struggling to put on your clothes

Time to get ready and head out the door

THINGS HURT, YOU’RE TIRED, KEEP MOVING that’s how life flows

Don’t leave the house without grabbing your meds

Off to the car now is where you head

Breakfast is in the belly, so now you’re fed
Ready to go the day is about to start

THINGS HURT, YOU”RE TIRED, KEEP MOVING says your heart

The day rolls along, you feel depleted

Head to the gym to get some fitness

Your brain is in a fog; you start to get heated

You walk and run, you’re happy that you lifted

THINGS HURT, YOU’RE TIRED, KEEP MOVING, you must have persistence

Back in the car you’re ending the day

Off to see your love, you can’t wait for a smile

Walk in the door and there they are

A hug and kiss, you talk for a while

THINGS HURT, YOU’RE TIRED, KEEP MOVING, reminding yourself you’ve come so far

Illness, struggles or having it rough

Angry, mad, sad or feeling so bleak

All it really takes is a mental tweak

Head out of the game, heart in the wrong place

THINGS HURT, YOU’RE TIRED, KEEP MOVING time to reclaim your space

Friends and family they love us so

Support and guidance is what they share

Feeling understood, sometimes they just don’t know

Embrace it, acknowledge it, it’s not always fair

THINGS HURT, YOU’RE TIRED, KEEP MOVING show yourself you care

Things hurt, you’re tired, keep moving you must

Live your life, for you, your husband or your wife

Light your soul on fire, for you must have faith it will inspire

Don’t quit, don’t stop, and don’t ever give in

THINGS HURT, YOU’RE TIRED, KEEP MOVING

Why Me (Or Why Not Me)?

When life throws us curveballs, lemons or whatever metaphor you want to attach to it; we tend to internalize, feel some sort of blame, or question what we must have done wrong. Many of us, myself included, often say WHY ME? Why has the universe conspired against me to cause this negative thing to happen? We also tend to attach ‘why’ to a lot of other outcomes in this life that do not benefit us. Like, why him, or why her? We often do this when other people find success and we are still swimming in this ocean of life, arms flailing, and opportunities just not presenting themselves. Opportunity

Thoughts of why me are natural when bad things happen to us. This is especially true when we, as well as those around us, believe we are truly good people. Why is something bad happening when we lead our lives with such integrity and good intentions?

Take me for example; when I was diagnosed with Scleroderma my first reaction aside from crying and becoming depressed, was asking, why me. Why did GOD or whatever great omnipotent being decided this were my fate? This obstacle, curveball or lemon came hurling at me that April morning—and it hit me hard. The why me’s kept flowing day and night. I guess it is human nature when we have some form of bad news. We go right to the most negative aspect of it and sink into some form of depression.

Now, please keep in mind, I never said why me and then tried to wish this on my enemy or anyone else for that matter. Nope, it was just about me. As in why did Scleroderma have to come into my life? Why did life drop a 500-pound brick on to my lap? What was the universe telling me? Maybe it was a sign that I needed to slow down, time to stop burning the candle at both ends, stop leading a dual career life, stop getting only 4-5 hours of sleep, stop always wanting [and sometimes very often eating] pizza, just STOP. Sometimes I truly believe challenges come to us not just as that, but rather as opportunities. These opportunities are presented in a way to motivate us to rise above and be greater than one previously could ever imagine. They are presented to us as an opportunity to be the best version of us that we can be. To showcase who we really are right down to our very core and essence of our being.

We all have our battles, struggles, and demons. But what makes my struggle any different than yours? NOTHING. My plight is no different than yours. Whatever ails you, whatever disease afflicts you, whatever parent, sibling or friend is sick, maybe you lost your job, maybe your loved one just broke up with you—whatever it is; that does not make my situation any worse than yours. My struggle is my struggle, and your struggle is your struggle. How I chose to live with my struggle is all about how I see it and the world in which I live.

Now, who knows how my disease will progress in a month, a year or down the line. I could have immense joint pain, a host of other complications, or I could remain as I am today. While no one can predict what the future holds, there is always a choice: to succumb to whatever ails you or embrace it. Work to understand it, then figure out how to work through it. How you view your struggle as it relates to how you see yourself in the world is your point of view and I will never question the way in which you live your life. However, I want to inspire you to look at your struggle, challenge, obstacle—you pick your word, and turn it upside down, kick it in the teeth and knock it sideways.

That is just what I did with my Scleroderma diagnosis. I could have easily let it become my life, influence my mindset everyday, let it get me down, let it bring my wife down and bring down others around me. Instead, I decided I was going to accept my challenge head on and live this Scleroderma life and live it fully. There is nothing it will do to me that I will allow it to affect my spirit and my zest for life. My spirit, will, and determination are my government, my congress, and my judge that will decide if the disease will be in charge or if I will be in charge.

So, take the first step. Make a commitment to yourself and be the champion that you are. Be the commander of your life, don’t let anything rule it, you rule it. I can’t twist your arm, but I can be that nagging, buzzing fly in your ear that says “YOU GOT THIS.” Under any and all circumstances in this life and with this disease or whatever afflicts you, you must not ever give up hope and have to keep fighting.

My decision was an easy and quick one. I saw Scleroderma as an opportunity to help others become stronger in the face of adversity—a spokesperson if you will for happiness, inspiration, strength and courage. My disease has lit such a fire in me to help others in similar situations. Now I see, my disease was a sign to slow down, but it was also a calling. A calling I have so longed for over the past 15 years of my life. I have jumped from job to job not knowing what I was supposed to do. I desperately tried to establish and figure out a career I was destined for, one where I could leave a legacy behind. And here it is Scleroderma, a rare autoimmune disease that is leading me to my path of awesomeness in order to leave this great legacy behind. Not only did I turn to writing my blog, I have also applied to graduate school to get a Master’s degree in Public Health so I can educate others on how to lead healthier lives.

I have such a renewed purpose in my life. Arielle and I are redirecting our efforts to just that—helping others to lead healthier lives through a total body and mind approach. Our company we started last summer, Confidence In Movement, began to inspire children and adults through movement and mindfulness. It had some direction, but let’s be honest—there was no real game plan, just a lot of great thoughts going in different directions. Now it has morphed into a specific goal. Help people afflicted with chronic illnesses that struggle with obstacles, and empower them to live healthier lives, be the greatest version of themselves, and ooze positivity through movement and education. Come join us on our journey as we try to make a lasting impact in this world.

HotComedyFinally, remember my friends, the next time you wonder why things happen to you, think about how things happen FOR you.

 

You Can’t Feel Sorry For Yourself

So there I was on April 3, 2017, hit with some the worst personal news I had ever been given. Sitting in the examination room with tears in my eyes, Arielle hugging me, waiting for the doctor to return, all my energy and fervor for life seemed to leave my body.

It was almost 3 hours before I had to head to Equinox in Downtown Los Angeles to teach a cycling class. I turned to Arielle and said, “I don’t think, I can teach.” My mental and emotional state was so shot that I could not fill the cup of other people. She immediately contacted my Group Fitness Manager and we started to find me a sub to cover the class. Luckily a fellow instructor agreed to do me a solid and teach my cycling class which was completely out of his way and without his cycling shoes.

After the nurse took vile upon vile upon vile of blood from my right arm, Arielle and I were finally finished at my appointment. We proceeded to drive our separate vehicles back home. While in my car, multiple times I fought back tears. I came home, sat down on the couch, and continued to sob—feeling like the world was caving in on me. The doctor had warned me to not read everything I could find on the Internet; but there I was, sitting with my computer, researching this disease called Scleroderma, which I knew absolutely nothing about.

I found the Scleroderma Foundation site and read about all 4 types of the disease and other various facts. I went to WebMD, and a hoard of other sites, as well as chat groups. All I kept focusing on were the negative outcomes that the disease could render upon a person. I read about Pulmonary Hypertension (PAH), Pulmonary Fibrosis, heart and kidney complications, and so on. Arielle and I went to bed that night and all I could do is feel my heart racing uncontrollably, my breath short and shallow. Suddenly, I thought that what I had read was actually happening to my body. I started to think that the disease had taken hold of me and I was succumbing to it. Mind you, these feelings and manifestations were despite earlier in day I had a complete work up: chest X-ray, heart, and lungs—all clear. With tears still in my eyes, my wife at my side telling me to relax, our teeny 6 pound cat Bleuy crawls up onto my chest. I always find it funny that animals instinctively can tell when their so-called parent isn’t feeling well. Plus, it also helps that Bleuy is pretty much human and acts like a cross between that and a dog. She sits outside the bathroom door when I shower. She runs to greet me when I come home, and daily, she walks me out when I leave to teach my morning classes. On this day, when I needed her most, she just knew. She laid down on my chest and purred for the next hour knowing that it was her duty to calm her “daddy” down. Bleuy

The next day, while I was still wallowing in my mortality, Arielle turned to me and said “I know you are scared and upset, but you need to pick a day this week to stop feeling bad and do something about your situation.” Suddenly it hit me, here I am this guy who pushes gym goers, clients, friends and family to be the best version of themselves, to face life challenges head on, conquer them and find greatness, yet I can’t seem to stop feeling sorry for myself when people in the world have it much worse.

It dawned on me that what I was doing was playing the part of a victim by wallowing in the what could happen; when instead I could be a great force to help not only myself fight a battle against my body, but to help others as well. So I decided to take action. I immediately went back to that dark, scary place known as the Internet and did positive research. Instead of looking for every document about the disease, I sought out and contacted support groups and the foundation itself. Every time I shared my situation with someone I started to cry. I shared my tears with wonderful people like Tina, who works in patient support at UCLA. And even though I cried because I was scared, I knew I was doing the right thing. Initially, I was scared to talk to people because I saw it as a sign of weakness within myself. However, instead of feeling weak, I began to feel empowered. After all, how couldn’t I? I was being was met with great compassion, support and resources from Tina and others. Their main objective was to help me with what could be a life-long battle. I was given referrals to additional doctors, support groups in my area, even contact information for other men fighting the battle. And there was good news too—I had reached out to Tina just in time as she informed me about a patient educational day at Cedars-Sinai Hospital. It would be a day where doctors, dentists and nutritionists who generously donated their time would inform patients about aspects of Scleroderma and answer any questions we as patients might have.

My aggressive action did not just stop with my research or attending educational meetings. I started emailing my doctor asking as many questions as I could related to my blood tests, lung tests, 2D Echocardiogram and CT Scan (which, by the way all came back great). Arielle and I discussed diet changes I would need to make and that she would make them with me to ensure I reduced as many inflammatory foods as possible. Then a lightbulb went off in our heads (ding!!!)

For years, my wife and I have struggled to find out what our true calling in life should be. Always disappointed with where we were in life (even though we have a great life), we constantly felt we had a higher calling. We have come to the realization that Scleroderma, while it is not what we would want as a sign, was just that. My diagnosis was a sign to use our passion for health and wellness to uplift and help others fight. We decided to use our ability to motivate and inspire others to rise up, no matter how tired they are, no matter how stiff their joints, no matter what fears they might have and fight to conquer this disease. One such idea that came to our minds was a fundraiser that involved movement. As a result, we are leading our first fundraiser in two weeks on August 5th 2017 at One Down Dog, a yoga studio in Silverlake, CA. Arielle will be teaching and I will be there with volunteers, who in the snap of a finger donated their time to come speak about the disease and meet anyone who wants to know more. If you are local and interested in attending, click here to sign up for the class. Can’t make it, but still want to donate and do your part? Click here to donate to the Scleroderma Foundation of Southern California.

I look at my face, touching and feeling my tightening skin, trying to accept the changes occurring in my body. I do cry sometimes and that’s OK. I am scared about leaving this world and the most important person in my life (Arielle). And naturally, when I cough, I tend to overreact and jump to conclusions but I am trying consciously to not feel bad for myself. Otherwise if you do, you end up losing. And I my friends, am a winner and my purpose is to help others win too.

I Am Not Invincible

For many years people that have known me have always asked me, “how do you do it?” Friends and students who have taken and continue to take my fitness classes and even my wife, Arielle, were always mystified and awed by my energy level. They were totally perplexed that I could wake up at 5am, teach a fitness class and get home at 11pm after 10-12 hours of running a restaurant only to do it again day in and day out. People would always inquire, they wanted to know if they could have some of whatever it was I was taking.

To everyone’s dismay, I was not on some form of narcotic or 5-hour energy drink. This was who I had always been for the last 13-14 years. Aside from having an underactive thyroid, which I was diagnosed with at the age of 20, I was an all-natural person, functioning on what my body could do. The only medication I had ever really take to help improve my energy level was the synthroid that was prescribed for me. I completely understand that living a life of burning the candle from morning till night is probably not the healthiest choice one could make, but what the hell it was not like I was doing coke or drinking excessively.

Whenever I had down time I was tired and always found myself lying around and or sleeping. I figured it was a by-product of my underactive thyroid and just my intense schedule of fitness classes and restaurant work. As time progressed and I found myself entering my mid-twenties, then my early thirties and finally around 35-36 my body started to catch up with the inevitable. While I could still push myself, my body started to ache, my joints felt stiff and I became less motivated to hit the gym and I was even more tired.

TeachingGlendale4Then one day in the summer of 2014 when I was driving to Santa Monica at 7:30am on a Saturday to teach an early morning cycling class, my right hand went numb. My fingers swelled and it felt as if my hand was the size of a balloon. Freaking out I immediately went to urgent care at Cedars-Sinai that afternoon. The doctor on call told me I had bi-lateral carpel tunnel syndrome. WHAT!? That makes absolutely no sense, as I do not do a job that keeps me at a computer all day typing, nor am I in the service industry doing things like massage therapy. Oh, and in case you did not know, bi-lateral carpel tunnel usually affects pregnant women. In this instance, one thing is certain; I am a man so I am unable to procreate in my own body, so let’s cross this off the list. Later, I saw a neurologist that suggested I get a very painful electrode test to see if I were a candidate for surgery. Once again a big fat NO. Finally, I landed in the Rheumatologist office of Dr. Lillian Szydlo to ensure I did not have Rheumatoid Arthritis or Lupus.

While my antibodies for autoimmune issues (ANA number) came back high, she was confident that I did not have these severe diseases. Instead she diagnosed me with Hoshimotos Thyroiditis, an autoimmune condition that is related to my already diagnosed underactive thyroid. Dr. Szydlo told me I should come back in 3-6 months to follow up. She also briefly mentioned to me that sometimes individuals with one autoimmune condition could also develop others, so she wanted to monitor my progress.

Upon leaving her office, I breathed a sigh of relief. Ok, this is not a big deal as I have been dealing with my thyroid for sometime now. Superman Greg lives on. So I kept going at the same rate. Being a stubborn, macho man and an invincible one at that, I never did follow up with Dr. Szydlo in the prescribed recommend time frame. Instead, I kept on trucking.

Dealing and coping with my fatigue, joint tightness, numbness, and so on were just part of my daily life. That is until about a year ago when I started having issues with my fingers. I kept getting these little sores on the middle finger and pinky of my left hand. Thinking I had an infected cut, I decided to try and home remedy the problem. My thought process: soak the finger, apply Neosporin and other medicated products with Band-Aids, and that would certainly do the trick. However, these supposed fixes did not do a thing to solve the problem. I mean I am a fitness instructor, I have to do push ups and be on my hands when I do burpees. Imagine going down to the floor left hand in a fist, right hand palm flat on the floor to do a push up. What a weird fitness professional right!? The pain was unbearable every time the tip of my finger would come into contact quickly with a surface. While trying to self-fix the problem to no avail, my wife commented constantly on my excessive Band-Aids covering my fingers and hounded me to see a doctor. Reluctantly, I called and made a new appointment with Dr. Szydlo.

By this time, 2 years had passed since my original appointment in her office. Arielle accompanied me to the appointment, but we drove separately. Arielle called me from the car complaining about traffic and I could sense she felt bitter and inconvenienced. So being the nice person I am, and a bit upset I told her to turn around and stay home. She said no, and finally showed up just as I was taken into the examination room. Then the doctor came in, insert music here – dun, dun duuuuuuu.

The doctor asked me a whole barrage of questions, conducted a clinical exam, listened to my heart, touched my abdomen, looked at the white and purple digits on my fingers and toes (oh I forgot to tell you, now I also have Raynaud’s Syndrome), and then finally took a hand magnifying glass to my fingertips. Dr. Szydlo stepped back, had a seat on her chair, my wife sitting on another chair next to me as I was on the exam table and without any uncertainty in her voice said “I am diagnosing you with Limited Systemic Sclerosis.” Me, totally bewildered and caught a glimpse of Arielle, then I turned my attention back to my medical professional. She was upset and angry with me for waiting so long to come back to her office. She proceeded to tell me that my disease is an autoimmune condition in a family called Scleroderma and my diagnosis is the second most serious kind and could be life threatening as it could affect my kidneys, heart and lungs.

At this point my heart sank. The doctor left the room for a moment and all that happened were tears. They streamed from my face and my wife hugged me. All I could say to her is “I don’t want to die, I don’t want to leave you.” In my mind the reality of my mortality rushed to the forefront of my thoughts and there I was saying to myself “I AM NOT INVINCIBLE.”