Chronic Illness

PART I: Feelings, Truth, and More Truths about Life

Arielle Miller / Acceptance, Accountability, Adversity, anger, Celebration, Central Coast, Central Coast California, Challenges, Chronic Illness, Commitment, Community, Current Events, Gratitude, Lifestyle, Married Life, mindfulness, News, Remembering, Santa Ynez Valley, Scleroderma, Uncategorized, Updates / Being Honest with Yourself, Birthday Party, Canceling Plans, Community, Friendship, LA Flake, Leaving Los Angeles, Life in LA, Lifestyle, Live Your Truth, Los Angeles, Los Angeles Life, Moving, Reflection, Santa Ynez Valley, Self-Reflection, Starting a New Life, Starting Over, Supporting others, Truth Speaker / 0 comments

May 23, 2019

I am moving in four weeks. Since alerting friends of my move from Los Angeles to the Central Coast (specifically Santa Ynez), I have been inundated with inquiries about having a going away party and/or trying to see me. And I am pleasant and as accommodating as I can be. But I cannot help but feel a bit hurt that people have the gall to ask those things, especially now of all times.

You know…In October, I threw a surprise party for my husband’s 40^th. Nearly 30+ people said they were coming and less than 10 of our friends showed up. I reserved space at a hip bar in Hollywood, had ordered appetizers, and was excited to show my husband how much those in our lives love him. However, in the days leading up to the party people started posting in the Facebook group AKA the invite that they could no longer make it. Ok, fine.

Then came the personal messages to my inboxes on Facebook and Instagram of people canceling. Finally, then came the texts. For the two days leading up to the party, the day of, night of, the hour before, and even DURING the party, people alerted me that “Sorry, I won’t make it”.

I cannot even begin to describe the deep hurt and overwhelming sense of sadness I carried around for the days surrounding the party. Even before heading out that night, I had to step outside my apartment and cry hysterically to my sister about how this party turned out to be a disaster. All I wanted was for my husband to feel special and this party had the complete opposite result. My husband saw the wetness in my eyes, heard the heaviness in my voice, and noticed my body language as I started to shut down.

For those of you whom do not know my husband Greg intimately, he is one of the most beautiful humans on this planet; and I am not just saying that because he is my husband. I am saying that because it is an irrefutable fact. Greg is loyal, hardworking, funny, and above anything and everything, he is kind. His gentleness is a defining attribute, one that balances my fiercely intense nature. Greg is patient, airing more on the introverted side, but also an incredible force as a fitness professional and as an athlete. He is selfless, dedicating himself to his graduate studies in Public Health, while working tirelessly to raise awareness for Scleroderma through fundraising efforts by running the LA Marathon. Is Greg a saint? Absolutely not. Is he a pretty fucking fantastic human? YES.

Sure, like everyone, there is always room for self-improvement and growth. In Greg’s case, he struggles to actively cultivate meaningful, personal friendships. Really, that is it. See, Greg has usually maintained two careers, working long hours in the hospitality industry into the wee morning hours, and then waking up early to travel to all corners of the city to teach morning and lunch time fitness classes for Equinox. This intense and exhausting pace with which he led his life left him with little time to see friends outside of his work life. Now, I cannot speak for Greg, and I am not sure at the time he even knew that his grueling schedule did not permit the fostering of friendships, but his constant go, go, go lifestyle left him exhausted and depleted. As we have discussed at length, Greg now knows, sees, and feels regret for not slowing down, for not taking more time for himself and others, for not recognizing the signs when his body was screaming for rest…But what is done, is done. The only thing that can be done is to look to the past for the lessons to inform how to live in the present while constructing the future. Hence, this move to the country.

Reeling from the emotions we experienced after Greg’s party, we both assumed some ownership over people not coming to Greg’s party because it is only fair. In years past, either Greg or the both of us did not always prioritize the relationships in our lives. All that considered and taken into account, we both walked away from his party raw and sad, but prepared and eager to apply what we learned in our lives.

This year we wanted to have a New Year’s Eve party because Greg cooks, we have a great place for entertaining, and we LOVE having people over. We sent out ‘feelers’ to friends and were met with “I’m not sure what I’m doing, but I’ll let you know”. Sure, a few people said they had plans, some did not even respond. However, most people responded with what we both felt was along the lines of people waiting and/or looking for something better to come along. I get that, I really do. I get people want to weigh their options. However, when someone is trying to organize an event, especially someone who thought enough of you to invite you into their home; simply decline the offer. Wishy-washy responses like that are rude and inconsiderate; and I am fairly certain that your momma raised you better than that.

So, no.

We are not having a party because experience has shown me that people only show up when it serves them, not to celebrate others. I do not want to leave a city I love, filled with people I love on a sour note.

Call me angry or whatever you want. I am just calling it like it is. And perhaps I am angry, but I am going to honor that while committing to simultaneously relinquishing it as I stand in my power.

Honest. Raw. Authentic. Which is more than most people can say about themselves, so I will own it.

The madness and upheaval in leaving Los Angeles has stirred up many feelings, forcing me to truly go inward. From packing and saying good-bye to my chosen family, a common theme has emerged. We do not know what we have until it is gone. All too often, we look back on our lives perplexed, wondering where the time went…

Dismayed by missed connections and lapsed opportunities, often we are filled with regret when the shoulda, coulda, and woulda’s start to set in.

Why does it have to take someone you value and care about moving away before you want to spend time with that person, or tell that person what they meant to you?

Why does it take death and loss to realize that we did not make the time we thought we had, when we had it?

Why?

This is an important conversation to have with yourself. It is important to take a hard, honest, and REAL look at the person staring back at you in the mirror.

Recognize that if you are not the person you think you are and want to be—then the time to make those changes is NOW.

Not tomorrow or when it is convenient.

Now, because there is never enough time to spend with the people that you love and cherish, so stop waiting and putting it off.

I can say with confidence that I am proud of the life I choose to live, and the manner in which I lead it…

Stay tuned–To be continued in PART II: Feelings, Truth, and More Truths about Life…

My Healing Journey, Part I

Arielle Miller / Abundance, Acceptance, Accountability, Adversity, Autoimmune Disease, Awareness, balance, Challenges, Chronic Illness, Diet, Diet and Exercise, Fitness, Hard Work, Holistic Nutrition, Keto, Ketogenic Diet, mindfulness, Nutrition, Strength Training, Updates / Autoimmune, Autoimmune Disease, Autoimmunity, Fitness, Healing Journey, Health, Health and Wellness, Seeking answers, Unexplained weight gain, Weight / 2 comments

November 13, 2018

Over the last year I have struggled tremendously. If you follow me on any of my social media outlets, especially on Instagram—you have watched my unraveling as my weight spiraled out of control without any discernable cause or explanation. I became more and more lethargic, depressed, anxious, frustrated, and more crippled by my inability to focus as a result of debilitating brain fog with each passing day.

Every day I’d wake up, walk to my closet and sift through my clothes, “Nope. No. Not that. That doesn’t fit. Not that either. Nope. No. No. No.” Which finally always culminated in a breakdown of tears in frustration because I literally couldn’t get dressed for work. Absolutely NOTHING I owned fit me any longer. Even my stretchy clothes and my sports bras were almost too tight to wear, and as it was, there were already some stretchy clothes I could no longer fit into. Demoralized, enraged, broken down I spent the last few months seeking answers.

I spent my entire summer in and out of doctor’s offices. Prior to this point, as my body and energy level started to change I sought out the help of a Registered Dietician. I was Crossfitting 4-5 days a week, counting macros, adding in rest days, adjusted my sleep schedule and in the end; the RD I was working with finally said to me she could no longer accept my money because in spite of everything she did to help me lean out and build some muscle, we were making zero progress.

Then, I saw a rheumatologist and she tested me for nearly every possible thing known to man, including my hormones. My blood work all came back normal with the exception of a positive ANA (Antinuclear Antibodies) which is the marker for autoimmunity and positive Thyroid antibodies, AKA Thyroid Peroxidase Antibodies. This meant that my body was showing signs of an autoimmune condition called Hashimoto’s Disease, but since I still had normal Thyroid function; these tests did not indicate I was suffering from an autoimmune disease. Since I was not quite sick enough to be treated, the doctor told me this could be reversed with lifestyle changes.

Lifestyle changes…?

Yoga, meditation, not working out, self-care, therapy, de-stressing, and generally just slowing down.

Lifestyle changes?! What do you mean? I eat well, workout, just got promoted, have a great apartment, in a city I love, where I get to share my life with an incredible husband, I have great friends, a wonderful family—what possible changes do I need to make to my life?!

I felt like this was fucking bullshit. But nonetheless, begrudgingly I made all the changes the doctor told me to make. I revamped my daily meditation practice, cut out the weight lifting, started walking, doing more yoga, resting, and trying to slow down.

In June 2018, I went Keto (short for the Ketogenic Diet), which in my last post at one week into the diet raved about how it was changing my life. However, what I failed to do was update that post. Because after my first week on Keto where it appeared that I had lost some weight at week two, I was UP three pounds, then four, then five and before I knew it—by summer’s end I had gained 13 pounds and increased my body fat by 10%! While I did not know this at the time, even as I phased out a Ketogenic lifestyle, alllllll the healthy fats from avocados, Primal Kitchen dressings, nuts, oils, and nut butters were LITERALLY TURNING MY BODY INTO FAT. While Keto aficionados will vehemently oppose this, do your research. There is a small amount of the population that Keto:

– Doesn’t work

– Actually promotes fat gain because the body’s systems, specifically the liver are so taxed that it cannot metabolize the fat. So, the fat is NEVER actually used as fuel and is well, just fat

This was clearly the case for me. Keto wasn’t The Magic Pill and I was devastated.

In July 2018, I saw an endocrinologist. My blood panels were all normal and that was the end of my treatment. What treatment? Yea, my thoughts exactly. Western medicine nowadays is comprised of running blood tests, discerning whether the results are within the normal range or not, then sending an email with the results. Today’s medicine practitioners aren’t actually concerned with identifying root causes, just prescribing a pill and calling it a day. But I digress.

In August 2018, my husband and I spent $1,000 of money we did not have at Bulletproof Labs, a Biohacking facility in Santa Monica to aide in my recovery. We were hoping that this fringe science was the answer to our prayers. It wasn’t, as it did not work.

In late August into September 2018, I started working with a naturopath. I saw her weekly where she conducted ‘Muscle Testing’ to determine the dosing of herbs and supplements I would take that week. During this time, despite her attempts to stop or slow my weight gain, I kept gaining about 1.5-2 pounds a week. Finally, after 5 weeks, she referred me to someone with more experience to help me because after spending nearly $100/week to seek treatment from her, I wasn’t getting any better.

During this time, I also saw a gynecologist. She biopsied my uterus to rule out Uterine cancer since she believed I wasn’t ovulating; nor had been doing so for the past 10 years. So, just to be safe, what was supposed to be a routine visit to dig deeper into my hormonal issues; she biopsied my uterus. Gentleman, you have NO IDEA what this entails nor could possibly feel like. Ladies, if you’ve had a LEEP procedure you can infer how this felt—and I had a LEEP in my 20’s. THIS WAS NOTHING LIKE THAT. It was HORRIBLY painful and uncomfortable. I mean we are talking about taking a chunk out of someone’s flesh and I will just stop there.

Thankfully, the biopsy was negative, but I was directed to a fertility specialist to delve deeper into my ovulation, or lack thereof. Table this—more on this later.

Why this long case history of my last few months? I felt it vital to understanding my last year was filled with counting macros, The Whole30, intuitive eating, going Keto, reverting back to my body building diet; all while pushing myself harder and harder in the gym and at Crossfit and making no gains. Over the last year, I was so devoid of energy that workouts wiped me out. More specifically, during intense exertion, I crumbled and couldn’t perform. I had an entire year without one Personal Record, no competitions or meets, and nothing to show for my hard work other than severe depression and anxiety, a thickening waistline with 25 pounds added to my barely 5’1 frame, fatigue, no menses, and yet according the doctors I was ‘healthy.’

I refused to accept that this life was my new normal. What’s more, I couldn’t fathom how the medical world wasn’t boggled nor concerned as to how and why I was exponentially gaining weight.

Thankfully in early fall, salvation was delivered in the form of a chance meeting at a Reiki healing event with my husband that our amazing rheumatologist had organized. Mona, a gorgeous woman with radiant skin, lush brown hair, magnetic energy, and an adorable baby just so happened to know Greg AND our rheumatologist! What a small world and in the vastness of LA, an even smaller city. Turns out, Mona is a Holistic Nutritionist and so, so, so much more.

After meeting Mona, a few weeks passed before Greg suggested I reach out to her. I mean, what did I have to lose [pun intended]? Mona called me and we spoke for about an hour. She asked me questions about my health and goals, shared some personal anecdotes about her own struggles, and her process to help people regain their health. Our conversation was effortless. Mona is infectiously likeable, genuine, caring, and INSANELY knowledgeable. I knew the moment I ended that call that help had arrived.

Mona sent along her client intake forms and a host of other materials for me to complete. I couldn’t get them back to her fast enough. I was ready to heal and get this journey going already! Over the two weeks to come, Mona poured over my forms and all of my extensive blood panels from the last 2 months. And when I say poured over them, she texted, emailed, and called to gather more information and ask more questions. At the end of the two weeks, we had a 2-hour phone call where she went over the data and a 10-page treatment plan.

Answers.

FINALLY.

Stay tuned for my second installment, My Healing Journey, Part II next week. If you do not subscribe to my blog, make sure you do so ensuring you don’t ever miss a post. Until then, stay healthy my friends.

Adventures in #GoingKeto

Arielle Miller / #GoingKeto, Challenges, Chronic Illness, Commitment, Diet, Diet and Exercise, Fitness, Hard Work, Keto, Ketogenic Diet, Lifestyle / Crossfit, Diabetes, Fat as Fuel, Fitness, Health, Health and Wellness, Insulin Resistant, Keto, Keto Diet, Ketogenic Diet, Mark Sisson, Metabolic Damage, Metabolic Dysfunction, Nutritional Science, Obesity, PCOS, stress / 1 comment

June 28, 2018

There have been a lot of things going on in my life, your life, and well; everyone’s life. So, when things beyond the political climate, World Cup, and life are already out of balance; how do you cope when your body is also out of balance?

I know for me, it kind of seems like things all hit me at once. Work, gym, health, and family stuff all seem to come hurling towards me at the same time. From getting a promotion at work—YAY! To switching CrossFit boxes—YAY! To monitoring and worrying constantly about my husband’s health—BOO! To addressing my own health issues—BOO! To my sister getting married in July—YAY! And more.

I mean, there is SO much ‘YAY!’ in my life, but that doesn’t change the fact that change comes with added stress. And currently, I am dealing with addressing my mechanisms for dealing with stressors in my life and it turns out; I am pretty darn shitty about coping with stress. Who woulda thunk?!

In the last few months there has been a major shift in my life. I cannot pinpoint exactly when it happened; but what I was doing to keep my body healthy clearly didn’t seem to be working anymore. Even with a Registered Dietician helping me monitor my macros and counseling me; my skeletal muscle kept going down and my body fat kept creeping up. What that means is, my body was buring its muscle and holding onto fat instead of the reverse. But nonetheless, I stayed the course. I continued to count macros and weigh my food dillgently while hitting my workouts hard. Then one day, my clothes stopped fitting. It wasn’t gradual like one may think. It was just one day, when the buttons on my jeans wouldn’t close. Then another day, I couldn’t get my shorts up over my knees. Then my sports bras became so tight I had to cycle most of them out of the rotation along with most of my stretchy pants because well, now apparently my stretchy clothes weren’t stretchy enough.

I cannot even begin to tell you how many tears I’ve shed and the hours I’ve spent talking to friends about how my body seems to keep rejecting me and all the changes I keep trying to implement. So, I began reading and listening to podcasts from leading doctors and researchers in health and wellness to try to help myself achieve results and feel better in this body.

Here are a few things I have learned—

Metabolic Dysfunction, or as some call it Metabolic Damage, is real. It’s demoralizing, damning, frustrating, and depressing. Years and years of dieting, calorie restriction, working with the wrong people, PCOS, as well as an eating disorder in my teen years have lead me to this very moment. A moment where my body is over-producing insulin, clinging to fat in my mid-section, and taxed out from over-training, lack of rest, and high-stress.

For me though, the hardest part about suffering from Metabolic Dysfunction are what I perceive to be people’s judgments of my body and lifestyle. Countless times doctors have looked me in the face and told me I couldn’t possibly be counting macros or eating well. I can’t tell you how many times the same doctors and even some coaches told me that I couldn’t possibly be hitting as many workouts as I claim, or hard enough since my body isn’t changing. And I can’t even tell you how many times I have left doctor’s offices after a plethora of tests to hear, “Your blood work is fantastic and you’re healthy!” because I sure as hell don’t feel healthy!

But my big issue isn’t that doctors can’t pinpoint my Metabolic Dysfunction; it’s that they don’t want to. They do the standard tests, and the standard tests render standard numbers, and I am simply labeled a standard carb addicted American eating too much bad fat [enter sarcasm].

But really, the worst thing of it all amidst my epic weight gain, is being a fitness professional and an athlete. Compelled by this need to justify my physique, I talk about what I am eating—or not eating. How much I am work out—or about the intensity of my workouts in some almost pathetic effort to say to people and the world, “Look?! See?! I really do work hard, just see past this body!”

Which is why my current foray into nutrition has lead me to adopt a Ketogenic Diet and lifestyle with the hopes that its claims at being able to restore healthy metabolic functioning can get me closer to my goals. I am just shy of one week #GoingKeto and so far, I love it. For the first time in YEARS I am excited about food again. I am trying new things like eating beef and will even be trying Bison in the near future when I am forced to eat it by my husband. I mean, who am I?!

What is a Ketogenic Diet, or Keto?

Simply, it’s low carb, healthy high fat, and moderate protein. There’s so much bad information out there referring to Keto as high fat/high protein and that’s just wrong! Too much protein is actually bad for you! Also, Keto encourages the use of healthy fats like avocado, olive, and coconut oils to eat and cook with. YES, Keto does also endorse consumption of ghee, grass-fed butter, and dare I say it—the cheese. However, integrated with organic meats and veggies, eating these foods means that you are setting your body up to become metabolically adaptive and flexible.

By becoming metabolically flexible, it means that after committing strictly to Keto for 4-8 weeks (depending on your body), you can then occasionally reintegrate things you enjoy without feeling sluggish, bloated, or gaining weight. Keto if and when done right, can liberate you from the cycle of yo-yo dieting; becoming a sustainable lifestyle that will allow you to enjoy life’s sweeter or more savory pleasures from time to time.

I suppose the biggest things I’ve gotten from people are the following:

“OMG! You are eating heavy cream, butter, and all that fat! That’s going to make you fat!”

AND

“OMG! How are you even surviving on virtually no carbs?!? I could NEVER do that!”

Well, let me drop some science on you.

First, for years and years the low-fat, high carb lifestyle has been promoted as healthy. Want to lose weight? Cut your fat and exercise more! Eat low-fat foods, lots of healthy grains, and don’t forget the carbs because you’ll need all that energy to burn in your workouts! And what happened? Our waistlines continued to expand, obesity, AND Type II Diabetes grew at alarming rates. So, sure—we should certainly keep cutting fat and eating carbs; it’s clearly working [enter sarcasm again]. As if my words aren’t convincing enough, maybe Harvard’s School of Public Health may sway you:

“It’s time to end the low-fat myth. For decades, a low-fat diet was touted as a way to lose weight and prevent or control heart disease and other chronic conditions, and food companies re-engineered products to be reduced-fat or fat-free, often compensating for differences in flavor or texture by increasing amounts of salt, sugar, or refined grains. However, as a nation, following a low-fat diet hasn’t helped us control weight or become healthier.”

When living Keto, you go into a state of Ketosis. This is where your body produces Ketones then burns them for energy instead of carbs. The Ketogenic Diet will actually prompt your body to burn fat for fuel. Ketosis only happens if you are depleted of carbs (consuming no more than a range of 21-50 grams per day) and I do not mean depleted in the sense of a body builder on prep. So what happens is: when you replace alllllllll those carbs with fat, it becomes your body’s energy source. You feel full, full longer, and more satiated than when eating a diet higher in carbs and grains, which get burned up quickly—leaving you with cravings and still hungry.

WHOA, a ‘diet’ where you feel satisfied, aren’t hungry, and feel more energized?! That is seems utopian. This Keto business must be too good to be true, or is it?

At nearly one week in, I do not miss my carbs. I do not feel sluggish, nearly as tired, and I feel energized. To illustrate my point, most days I am in a CrossFit WOD, teaching multiple high intensity or cardio class formats, and/or adding in another gym session—I am moving and grooving, and I feel GOOD. What’s more is since my meals are so nutrient dense, the need to eat so often has diminished—though I do always make sure to have keto-macro friendly snacks with me like nuts, a nut butter packer, or a cheese stick.

Tomorrow, I weigh myself. I should have started this journey by taking inches and will start that tomorrow. I plan on being as open and transparent about this and my journey as possible. I mean, what do I have to lose…?! All puns intended. The way I see this, I am treating Keto as an experiment. Learning all I can, doing all I can, and eagerly awaiting the results of my experiment.

Still scared of #GoingKeto? Or are you intrigued, tantalized, or ready to consider making some changes? Listen to this podcast featuring Mark Sisson, a leading researcher in the fitness world and be prepared to have your life forever changed!

Will you join me in #GoingKeto? Because right now, I look in the mirror and most days do not recognize the woman I see; but I know that the reflection I see is only temporary.

I will get this body healthy again.

I will love this skin I am in again.

I will move better in this body again.

I will rise again.

When Given the Choice Between Being Right or Being Kind, Choose Kind

Arielle Miller / Abundance, Acceptance, Adversity, Autoimmune Disease, Awareness, Build connections, Challenges, Chronic Illness, Community, Giving Back, Gratitude, Hard Work, Married Life, Scleroderma, Teacher Life, Updates, Yoga / 2018, Autoimmunity, Choose Kind, Fitness, Helping Others, Holiday Season, New Year, New Years Resolution, Scleroderma, Sclerosis, Wellness, Yoga / 2 comments

December 30, 2017

As the New Year rapidly approaches many of us turn our gaze inward for our annual forced introspection and goal setting. For me though, I like to check in with myself periodically to hold myself accountable to the things I love in an effort to live my best life; but like many of us, I too cannot help but feel that same pull as 12:00am on December 31^st inches ever closer.

This year for me has been filled with unforeseen trials, tragedies, and triumphs. From competing in my first ever powerlifting meet, to taking a hiatus from teaching yoga after 5 incredible years, to sharing a blissful 2^nd wedding anniversary with my love, to my sister’s engagement (it only took long enough!), to sadly my grandmother suffering multiple strokes and landing in a nursing home, to coaching at Orangetheory Fitness [then quitting], to gaining 22 pounds, and so, so, so much more.

But also amidst 2017, I was voted onto various committees at my school where I started assuming more responsibilities in pseudo-leadership roles. This year, I have thrived in my classroom as a middle school teacher, and experienced a rejuvenation for my craft I haven’t felt in YEARS. It seemed that my life, while filled with challenges was [finally] falling, no—it was settling into place.

My second life and career in the fitness world teaching cycling, yoga, and other fitness formats for One Down Dog and Equinox was coming full circle. I was being sent to trainings, teaching more formats, and getting recognition in being selected to participate in high-profile events through Equinox like Cycle for Survival and Cycle for Heroes. It seemed that my life was hurling right ahead in all the positive directions I had intended until one fateful April morning when my husband Gregory was diagnosed with Limited Systemic Sclerosis, more commonly known as Scleroderma.

As I have previously written, those early days are hard to recall. They are kind of a blacked out blur. And to be completely honest, much of what I take away is the fear in my husband’s eyes and the ceaseless crying. Just flirting with 2 years of marriage…my beloved husband was delivered earth-shattering news that would forever alter both our lives…

Would Greg die?

What would happen to his body?

How would I assume the role care-taker?

The questions didn’t stop and they haven’t stopped—that’s one of my husband Greg’s greatest and most irksome qualities: His ability to ask incessant, albeit mostly great questions.

We mobilized immediately and jumped head first into the Scleroderma community meeting new people, touched by their stories and strength, making life-long friends, attending galas, donating money, but above all—giving back. Together, side-by-side, Greg and I held a fundraiser at One Down Dog where we got our yoga on and auctioned off donated goods from community partners in raffles and a silent auction for the Scleroderma Foundation of Southern California. Jessica Rosen, One Down Dog’s owner graciously donated the space, matched donations, and helped us do something great for others for no reason other than it was the right thing to do–help those in need.

Inspired by the success of our first fundraiser, Greg and I set our sights on a second fundraiser, but as fate would have it; Greg was promoted to Group Fitness Manager at an Equinox club out of the initial proposed location—putting the fundraiser on hold for the moment. Again, so much darn good this year—that’s for sure.

Look at that smile! Michael, a Scleroderma Warrior!

The holiday season rounded the corner and Greg stumbled upon someone’s Instagram page that piqued his interest. It was of a mother sharing photos and the story of her 9-year-old son Michael fighting Scleroderma (click HERE to visit Tiffany’s Instagram). Immediately, Greg and Tiffany started talking via social media. We came to learn much about Michael’s struggles and bravery. At just 9-years-old, Michael had been battling Scleroderma since he was 3-years-old! Additionally, Micheal’s condition was further complicated by his Parry-Romberg Syndrome, (also known as progressive hemifacial atrophy) which is a rare disease characterized by progressive shrinkage and degeneration of the tissues beneath the skin, usually on only one side of the face (hemifacial atrophy) but occasionally extending to other parts of the body (Wikipedia.com). Needless to say, Michael’s story touched our hearts deeply.

Both Greg and I repeatedly poured over Tiffany’s Instagram…our hearts aching for poor Michael. At times, I even felt ashamed of myself for having the audacity to pity myself by calling myself fat, or ruminating on the 22 pounds I put on—I mean, c’mon. There are people who have REAL struggles and my biggest issue in my life is at times I think I am fat?! What in the actual hell is wrong with me?!

Michael’s mother posted to her Instagram about his upcoming surgery—a fat transplant procedure that would help restore some symmetry to Michael’s face. She discussed an online giveaway she had entered with the hopes of winning a Nintendo Switch to give Michael for Christmas. Tiffany went on to discuss in her post that her husband was trying to work overtime to afford the pricey console. It was then when Greg turned to me and said, “I want to buy Michael the Nintendo Switch.”

The Brave Michael pre-surgery

There was no hesitation, and no discussion needed. Immediately, I responded, “Great. So buy it.”

Greg reminded me that we’d be spending money on a complete stranger and that spending this kind of money would have its repercussions; but we both didn’t care. This was the right thing to do, just like the many others that have done the right thing/s for us. Finally, it was our turn to pay it forward.

To me, money is just that—money. If something I have can alleviate the pain and suffering of someone else, then so be it. Seeing Michael open his Nintendo Switch on Christmas…knowing that Greg and I were able to do something truly altruistic this holiday season was all the thanks we both needed. We knew buying Michael that Nintendo Switch was money well spent.

In looking back, to say I lived a lifetime this year would be an understatement. Filled with lots of good, some bad, and few very ugly parts; I need to say that Greg’s diagnosis has come as a blessing in disguise. Greg has been entrusted to be the face of this little-talked about and very rare autoimmune disease. Greg’s diagnosis inspired him to head back to school for a Master’s in Public Health so that he can help others afflicted with autoimmune conditions. We have collectively fundraised thousands of dollars to help in Scleroderma research and patient advocacy. And as of yesterday, Greg officially registered for the LA Marathon and will be running to raise awareness and funds for Scleroderma!

Yes, there isn’t a day that doesn’t pass that I do not look at my husband and worry about his health. There are times where my eyes well with tears in a collective sadness, lamenting for my husband’s lack of mobility, range of motion, and incredible discomfort in his body. Nothing about Greg’s daily life, or mine for that matter is, nor will remain easy—and that’s ok! Personally, I wouldn’t have it any other way. For it is only through trials and tribulations does one truly cultivate perseverance, wherewithal, and character.

So, while we may not have had a choice in what 2017 dealt us when Scleroderma chose us; in 2018 it will not define us. There is no time to be sad, worry, and feel bad for ourselves as that won’t change anything. The only way I see my year and moving grandly into 2018 is by taking action. We won’t stop, and can’t stop.

Wishing you all a very happy and healthy New Year, here’s you my friends and family as we rise up together to live our lives as our best selves.

The Advocate I Should Have Always Been

Arielle Miller / Abundance, Acceptance, Accountability, Adversity, anger, Autoimmune Disease, Awareness, Blog, Build connections, Celebrate, Celebration, Challenges, Chronic Illness, Community, Confidence In Movement, Fitness, Gratitude, mindfulness, Motivation Monday, Scleroderma / Autoimmune Disease, Awareness, Charity, Chronic Illness, Family, Gratitude, Love, Lupus, Mother, Mother Daughter, Scleroderma / 0 comments

July 31, 2017

Over the years I have encountered my fair share of friends raising money for AIDS, Breast Cancer, and so on. Often times their reasons for involvement were obvious; but I always still wondered, why people got involved, how they got involved, and what kept them involved. So when I could, I happily donated.

Just this past year, I was bestowed the incredible honor of being able to ride (as a support cycling instructor) on stage at Equinox’s annual Cycle for Survival event which raises millions of dollars a year to fund rare cancer research at Memorial Sloan Kettering Cancer Center. I cried while listening to the harrowing tales of sadness, but I was struck by the strength of our community. Cancer or no cancer in my life, my heart felt deeply for every family that lost a mother, father, friend, daughter, son, niece, nephew and so on. Cancer affects us all. Sadly, cancer and cancer-related deaths are on the rise; thus its visibility and diagnoses at this point are not a matter of if cancer will strike a family, but when.

The big ‘C’ or ‘FUCK CANCER’, like so many say, rightfully so garners a serious reaction from people. You mention cancer and people instantly give you their attention and sympathies. Cancer is something we talk about, know about, and are much more public about. It is something we are more comfortable discussing because tragically cancer has become so commonplace in our world as a result of environmental factors, diet, industrialization, and more.

But this post isn’t about cancer.

And this post certainly isn’t about devaluing anyone’s battle or struggles either. My problems are not bigger than yours, and we are not in competition with one another with respects to whom has been dealt a shittier hand of cards. This post is merely about my life and experience with respects to growing up with my mother, someone afflicted with an autoimmune disease.

For me, this is about drawing awareness to chronic illness. It has been my experience that when I encounter people afflicted with autoimmune conditions, they down play them or very quickly mention it as an afterthought. Usually, the thought is then followed up with, ‘Well, you probably haven’t heard of it…’ before changing the subject. And maybe, no—I haven’t. All of us haven’t because when it comes to chronic illness, there is no cure or potential cure, and in the interest of being completely candid—we just do not know what to say or how to react to something we do not know, nor understand. We all fight our own battles and choose to wage war differently. For me, the way I wage a war is to strike straight to the heart and make you feel something in order to stimulate action. I openly discuss the happenings of my life with the hopes that somehow, somewhere, my story is touching a life…

My amazing mother and I. This pic is from September 2016 when she flew out to LA to support me in my first body building show!

My mother has lived with an autoimmune disease virtually her entire life. At 19 years old her youthful body was fatigued and rundown. She was diagnosed with Juvenile Rheumatoid Arthritis (JRA). However, as my mother aged, her symptoms worsened and did not subside. It wouldn’t be until almost 20 years later when my mother would be diagnosed with Lupus. I was in middle school at the time (though my mom seems to think elementary school) and this was well before the internet, so all we had to work with was from what the doctors told us. Still, the gravity of my mother’s Lupus never truly made sense nor hit home. I think this happened because as a pre-teen one’s only thoughts and focus are on and of oneself.

As I moved into my teenage years, I was a nightmare to deal with. I was not only unruly, but a raging mess of hormones. I was violent, aggressive, and my moods erratic. I spent much of my high school years grounded and bitching to my boyfriend Josh how much I hated ‘them’. During our family blowouts, my father would scream at me, “YOU ARE KILLING YOUR MOTHER!”

That was the only time my mother’s illness ever came into play or conversation—when I upset her or the status quo at home, which trust me, was a daily occurrence.

We never changed our diets; my parents remained relatively sedentary outside of commuting to and from their jobs in New York City, and life rolled on. However, yearly we attended the Lupus Walk to raise money for research. The impression though that I got from my parents was it was a half-assed effort. Something they did because they felt obligated to; as opposed compelled to participate in because of a deep seeded want to help their cause. And that’s not necessarily a bad thing either—to each his or her own. Just because someone is afflicted with something doesn’t call for instant and complete mobilization of charity events, fundraisers, and involvement. The difference between my parents and their approach to my mother’s illness when compared to my husband and his disease is vast. People like myself and my husband Greg rally our community around our passions and causes. Albeit, the world we reside in is immensely different than the world of yesteryear with things like crowdfunding and social media; but we are public and visible with our successes and our struggles.

My beloved family at our wedding in LA

My mother never complained, asked ‘why me?’, or even demanded special treatment. As a matter of fact, my mother retired from her work at Con Edison after 41 years of service never even informing her employers of her condition or filing for FMLA (Family and Medical Leave Act). To say my mother, whom is this sweet and kind soul is tough, is an understatement. She’s a quiet kind of fierce. The kind you never saw coming—a woman that in her retirement took up yoga and water aerobics after YEARS of inactivity. My mother, as she ages is getting super weird as ‘old people do’—doesn’t miss a thing. Observant and thoughtful, she thinks of others first. Two days after I got my braces on, a package arrived at my house from Costco. My mother sent me a waterpik to ease my efforts in trying to keep my [new] braces clean. She is and always has been that behind-the-scenes kind of woman who deserved more from this life. Hell, from me. More on that in a bit.

My mother, now 61 years old lives with her Lupus and thankfully it doesn’t appear to be an issue. Granted, as with any disease these things manifest enormously different from person to person and can take a turn for the worse at anytime. My mom does take medication for various things and has throughout the years, but aside from minor hiccups here and there; she’s earned a relatively clean bill of health. I am convinced part of my mother’s longevity and relatively healthy life is a direct result of her mindset when it came to her illness. Granted, both she and my father could certainly eat better and be more active (yes, I am totally throwing you both under the bus here); but her mental state is precisely what’s correlated to her overall well-being. My mother chose to define life on her terms as opposed to letting her illness define her. Similarly, my husband Greg recently wrote about this topic on his blog. You can read his post by clicking HERE. I cannot emphasize enough the power of a positive mindset. We cannot control the things that happen to us in this life [like I mentioned in my last post, click HERE to read it], but we can consciously decide how we proceed forward.

Now as a woman now of 35, I feel deep sadness that I didn’t invest in my mother’s health and illness sooner. As my mother and my father age, I worry incessantly about their health and well-being. But more than that, I feel selfish that only now with my husband’s own chronic illness (Scleroderma) I am using my voice. I am embarrassed to say that my uncle has diabetes, my cousin breast cancer, and many of my friends are living with debilitating illnesses and NOW—now I am using my voice?! At times I grapple with feeling like I am not good enough to lobby for a cause, this cause in particular for I have willing sat idly for so long…And then I step back and realize that I need to be kinder to myself. Beating myself up to rally around and for every cause is not only not possible, but the timing wasn’t right for me.

The time is now.

I am grateful to have such inspirational people in my life to model how to gracefully approach adversity. Moreover, I am inspired by their strength to use my voice as a rallying cry to direct more funding towards autoimmune disease research, treatment, and spread awareness. I cannot look back at what I didn’t do but I can look ahead to the future and know what I can and will do.