Something To Live For

“It is good to have an end to journey toward; but it is the journey that matters, in the end.”
― Ernest Hemingway

I stare at the blank page and am finding it difficult to summon my muse. She likes to hide from me when I'm happy, when I'm at peace. And that is what I am these days. Happy and at peace. I say those words cautiously however because I want the feelings to last and not be taken away by someone giving me "ojo." But I suppose that's life. Good times and bad times like Charles Dickens once wrote. 

But it's true, I haven't written in a few weeks because I have not been inspired to write. I have been "too happy" to write. And yet, I did not want to let another week go by without sharing something. I do not want to be one of those people that only shares and writes and is artistic when things are bad. It is important to share the good stuff too. It is important to share the whole journey, not just the bumps in the road. 

Truth is, I realized this very early morning that I haven't been inspired to write because I have been inspired to do other things.  And that's ok too. For the last 5 years I have come up with random schemes, goals, and projects that I never followed through on. That have never come to fruition. And, now in the last 5 months I am making them happen. I am no longer afraid to "fail" at them because I know that just by getting them started and off the ground I have already succeeded. 

The projects that have kept me from writing and have fueled my inspiration are: 

1. DR School Supply Drive: My maternal grandfather passed away in the 80's when I was just a baby. During his lifetime he became a well respected teacher in many small villages in the Dominican Republic. In one of those villages, he was so admired that in 2010 they built a small school and named it after him- Escuela Angel de Jesus Duran. When I learned about the school, I decided I wanted to help in some way. 

In 2011 I decided to collect school supplies and try to start a scholarship fund for the students. Well, life got in the way and nothing came of it until this year. I enlisted the help of my former colleagues at Cristo Rey H.S. and last month the student council helped collect over 1000 items for students in the DR. From pencils and pens to folders, calculators and rulers. What's truly amazing about all of this is that the students at Cristo Rey are considered "at risk," "disadvantaged" and (shudders) "poor." And yet, even they realized how lucky and privileged they really are compared to those in other countries. I am amazed by their generosity and thankful to know such giving and wonderful people.  My friends and family have also helped by donating supplies and money so we can purchase more of the things we need. 

In June of this year, Lupe my and parents and I intend to go to the DR and give the supplies to the school in preparation for next school year. I am super excited and really proud of myself and my efforts for making this dream come true. This is only the first small step and I truly believe that, in time, I will be also able to create and maintain a scholarship fund for these students as well. I never thought it would be so easy to do something so significant. 

2. The GEIA Network:  In 2007 when I was first diagnosed I wanted to create a young women's support group for chronic illness/disease sufferers. I only got about as far as creating a flyer and receiving one email from a young lady who was interested. I felt discouraged and quickly gave it up. Over the last few years I have thought about how much I wanted to connect with other women who have experienced what I have. I just never knew where to start. 

Recently, my best friend was diagnosed with MS. It has been a rough and incredibly life changing experience for her. She knows I am one of the few people that truly understand what she's going through and I have been able to help get her through these first couple of rough months. Knowing what I know now and seeing the difference I have been able to make in her life, I decided that now was the time to make something happen. Aside from my best friend with MS, over the last year I have made friends with too many women who suffer from chronic pain/illness and whose lives revolve around taking medications, managing fatigue or pain and who have had to give up the things they love just to feel "ok." I decided that enough is enough and we don't have to feel or be alone in our struggles. So, the GEIA network was born. My best friend and I began to collaborate and came up with the idea for the GEIA network: Get Empowered, Inspired and Artistic. The name "Geia" comes from the Greek goddess of good health "Hygeia." We turned it into an acronym and made flyers and a FB page to spread the word. 

The goal of the group is to get women who suffer from an auto-immune disease or chronic pain/illness together to do things that will empower and inspire them so they don't feel alone. I hope to create and host monthly events where we can come together and share stories, experiences, advance and just have a good time in whatever "easy" way that is. It is not a time to have a pity party (although sometimes we may need that), but rather it is an opportunity for us to feel strong again. It is a time for us to take our lives back. The first event is a small "mixer" this coming Friday and my goal is to have at least 10 women there. If I can achieve that, then I know that even greater things are possible. 

These goals may seem small or arbitrary to some, but they're a huge deal not only to me but to the people that they effect. They are my personal projects that are finally coming to fruition and that I am passionate about, not because of any recognition that I expect for myself, but because of the people that they help. I am passionate about education and believe that all children have the right to learn and they can only do that with the right resources. I am passionate about women's health and empowerment and I believe that there is strength in numbers. The more women who come together to spread awareness and support each other, the stronger we all are. In the end, even if just one kid gets a pencil and a folder that he/she didn't have before and if even just one other woman makes a friend and meets someone who she can reach out to in a time of need, then the journey and my efforts will not have been in vain. 

So forgive me if I do not write as often, because my time and talents are being focused elsewhere. But do know, that my heart and my spirit are in the right place and I will have plenty to share once I return from taking these paths less traveled by. 

The Energizer Bunny

“Resilience is accepting your new reality, even if it's less good than the one you had before. You can fight it, you can do nothing but scream about what you've lost, or you can accept that and try to put together something that's good.”
― Elizabeth Edwards (UK)

"You're my hero, you know. You just keep going and going and going," they said to me. And I nodded. And I smiled. "What else am I supposed to do?" I asked to no one but the air, the wind, the trees and the grass. It was a rhetorical response meant for deaf ears. Because the alternative to "going" is an option no one is willing to consider.

What does it mean to be resilient? What would I have to do to be considered otherwise? Friends, women and family look at me sometimes with wonder and awe. They show respect for my suffering and admit their admiration of my talents and persistence. And I am truly grateful and humbled by their praise. But I can't help but wonder, who or what defines strength? And why is it something to be admired?

Was it resilient of me to see a therapist for 4 months after my miscarriage?
Was I strong when I broke down in my car at the CVS parking lot because I saw three pregnant women and wondered why not me and then debated whether or not I should speed my car into oncoming traffic?
Was I heroic the first, second, OR fifth time (yes it truthfully has been that many) I quit my "real"job to be able to manage the other full-time gig known as scleroderma?

Or was I weak? Is asking for help an admittance of failure? Is the consideration of suicide an admittance of worthlessness? Is quitting or running away a sign of giving up?

I don't know. Perhaps.

But perhaps the strength lies in the fact that instead of filling the anti-depressant prescription, I wrote poems instead. Perhaps my resilience is defined by the fact that I drove back to work and taught three more classes with a broken heart and smile on my face. And maybe my heroism is found in the acceptance of my limitations and my willingness to let go.

Either way, I still can't help but be confused when people tell me: "You just keep going." Because truthfully, "What else am I supposed to do?"

I never did any of the things I did with the intention of being admired, much less become anyone's hero. I did them because like my mother says "no me quedaba de otra." (I had no other choice.) I could put in a new set of batteries and keep beating my erratic drum, or I could stop. Stopping was not an option.

So instead, I beat my drum loudly and march to its beat at a pace that is comfortable for me. I write to survive. I laugh to keep from crying. I love to feel at peace. If that is resilience, then yes, I am resilient. If that is heroic, then yes, I am heroic. And if strength is defined by my ability to get up every morning and do it all over again and again, then yes, I guess I am strong. I do it not for praise or admiration. I do it simply for no other reason than the fact that I really don't know what else I'm supposed to do.

But perhaps too, that day in my car, the many times in the ER and at the hospital, at least once a month in my bedroom and even a couple of times in my classroom, when I let the tears fall and tell no one but God and the silence that I can't do it alone, that I am the most resilient of all. Sometimes, the most heroic thing we can do, is admit that we are weak.

What Could Be, A Lesson on Perspective

“We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.” 
― Abraham Lincoln

In the last two weeks I have had my 4-6weeks check ups with both my cardiologist and rheumatologist. And I am happy to report that those had to be the two easiest and quickest visits of my life. I spent more time in the waiting room than I did with the doctor. My cardiologist declared me "the healthiest patient they have to keep seeing," and my rheumatologist said I didn't have to see him again until May.  Woo hoo! This may not seem like much to the average healthy person, but for someone like me who has had to go to the doctor on average 2x a month for the last year...this is HUGE! It means that my life is not in imminent danger of ending. :)

Despite the pitfalls, challenges, ups, downs, turnarounds, detours and chaos I am truly blessed. I am in a great place. Before seeing my rheumatologist this week, I was kind of in the dumps. I wasn't feeling well and my mood sucked. I was upset because I was feeling that life was unfair (yes, I know I sound like I'm 12). I felt that there had to be more than waking up every morning and trying to convince myself that I was lucky to be alive. That "all would be well" if I just kept repeating it to myself. I felt sorry for myself and wanted to sulk. I almost didn't make it to my Dr.'s appointment thinking "what's the point?" But, I'm glad I did.

I'm glad I did not because of what he told me and the clean bill of health he gave me, but because of what I was reminded of while in the waiting room: How bad this disease could and probably should've gotten by now. Five minutes in the waiting room and I saw several disfigured hands, a woman in a wheel chair, two oxygen tanks and a sea of sad eyes. Sad eyes that stared at me discreetly looking for my ailment. And yet, five years post-diagnosis and my physical appearance has remained relatively unscathed.

Have I had my fair share of scares? Yes.
Are my insides scarred and damaged? Yes.
Is my disease still active? Hell yes.

But, I choose to see the roses and not the thorns. The roses are the fact that 10 years ago, a scleroderma diagnosis was a death sentence, but not anymore. The roses show me that I'm blessed to be able to type this post because my fingers still work. The roses ask me to smell them with a big deep breath to appreciate the fact that my lungs still work well on their own.

At the beginning and end of every day...it's about perspective.

And today, I want to give you some. While in the waiting room, realizing what my life COULD be like and taking a moment to appreciate what it is, I decided it would be a good thing to share this perspective with my readers.

I took it upon myself this week to photograph the significant parts of my body that could/should be affected by scleroderma and I compared them to pictures of what it has done to others. Below are some of those images....just so those of you who don't live with this or any other illness can understand and appreciate the little things that even I take for granted sometimes.

What my arms/hands/legs COULD look like. Notice the
shiny, tight skin and curled fingers (movement is extremely
limited)

What my arm/hands DO look like. ("normal") Ams
used to be shiny but have returned to "normalcy."

Finger tip ulcers from Raynaud's- what it COULD be.

Notice the two small "pits" on middle finger and pinky.
Almost harmless as long as I keep them clean and avoid the cold.

What my hands/joints could look like.
Joints are permanently damaged and skin is tight.

What my hands do look like/ joints are unaffected,
minimal but unnoticeable skin tightening.

What I could have all over my face. Though this is not painful...
it ain't cute either.

I only have a few spots, notice the large one on the cheek,
a few on the nose and the camera didn't capture the rest.

~~~~~~~~~~~~~~~~~~~~~

So, I guess what I can take away from all of this is that when people tell me that I "look good" I will say thank you and mean it, and not get upset because yeah...I do. 

Yoga, Meditation and Me

“When you listen to yourself, everything comes naturally. It comes from inside, like a kind of will to do something. Try to be sensitive. That is yoga.” 
― Petri Räisänen

It's 5am on a Saturday morning and all I hear is literally the tick tock of a very old clock on the wall above my patio door. This blog post is two weeks late and that makes my Type A, neurotic self want to burst(into a neat and organized pile of matter I can control of course). This feeling is only exacerbated by the fact that I haven't slept all night and that the acid reflux burning through my chest, up throat and into my ears is my own fault because no one forced me to eat pizza and drink coffee.

But like I said, the clock on the wall ticks away. This post is two weeks late. And yet, despite my desire to want to spontaneously combust, I am at peace. Crazy how both of those feelings can exist simultaneously within me now. And I credit that to yoga and meditation.

For the last few months I've gone on and on about how I'm changing my lifestyle. Redefining my "normal." Setting and sticking to my "non-negotiables." And finding a realistic balance. I've changed the food that I eat, the time that I rest, and how much and how often I work and pray(meditate). I've attempted to control what I can, so that when everything else around me spins out of control, I don't completely lose it.

Einstein said that "insanity is doing the same thing over and over again and expecting different results." I had to stop doing the same things hoping to "get better" or I was going to end up back in a hospital, of the mental institution kind.

After many months of slowly removing the bad and incorporating the good, I came to the final chapter of my "transformation/rebirth" saga: consistent yoga and meditative practice.

Now, many will cringe when you say those two words and feel like it's some new aged hippified trend made popular by the likes of that unnecessary lady who wrote Eat, Pray Love, Oprah and other Hollywood stars. But the truth is that true, honest, and meaningful yoga and meditation really does have the power to change your life. Why? Because it can change and teach you how to control your mind. If you can control your thoughts, and bring peace to your life (at any venture) then you have experienced true freedom.

I decided on yoga and meditation because it is unattached to religion. (At least in my practice) I did not want to have my Catholic guilt interfering with my connection to my higher self, and though I still read passages from the Bible to give me hope and inspiration, it is easier and more beneficial for me to find that same comfort from within.

It's taken me many months to finally make yoga and meditation a habit but over the last two weeks I have had several "aha" moments that solidify it all for me.

1. While sitting in a yoga class (with a very awesome and bubbly teacher/quite the opposite of what you'd expect in a yoga class) I realized that yoga was more than just a good workout with mental and physical health benefits. Yoga is a philosophy. A way of life. When people think of yoga teachers and "yogis" they think of chilled out "zen" and hippified individuals. But the truth is, that's not the case. Yoga teachers and avid yogis have problems just like the rest of us, but they have learned to be in the chaos and trauma of their daily lives and find stillness. (This is something my yoga teacher told me in the very first class we had together, and it didn't hit me until 4months later) It's like those commercials where someone stands in the middle of a busy street and all you see is the blur all around them and they're moving in slow motion, only in yoga, you're completely still. I now know that no matter what life throws at me, I WILL be ok. (I was very unsure of this in the past)

"Let the light within shine through the darkness that surrounds you."- Rhia R., Yoga Teacher(paraphrased)

2. My second "aha" moment came when I did two things by instinct without making excuses or trying to convince myself into it. One morning last week I woke up, sat up in bed and just instinctually started meditating. It wasn't even until about ten minutes into it that I realized what I had done (breaking the meditative state BUT...) it was an awesome moment. The other moment happened when I realized that I didn't "feel" right because I hadn't practiced yoga in a few days. I noticed a HUGE difference in my joints, muscles and even energy levels. When I started to analyze why I felt this "strange" (and it wasn't pain that I felt, just different) I realized it was because I hadn't practiced in a few days. So, I simply put out my mat and practiced for about 20min. It completely changed my mood and my body.

3. The last epiphany I had, was while watching TV with the hubs. There was some random movie on that was not a comedy. Hell, it wasn't even a drama. It just was. (One of those talky talky indie films) But while watching it, I found myself involuntarily smiling. It wasn't like a full on cheesy smile, just a soft easy one. This is NOT a usual "face" for me, so after only a few seconds of this I realized what I was doing but couldn't stop. My type A self took another moment to analyze the situation and decided that this MUST be my inner peace expressing itself. I know it sounds hokey, but people, if you know me, you know I don't smile "just because." I make A LOT of contorted faces, smiling is rarely one of them. I knew then that this stillness and peace was coming from somewhere deeper and I was happy to embrace it.

I am not trying to "push" yoga or meditation. It is my perception of how to achieve a more balanced life and each person has to find that for themselves. But I will say, for those people who have often told me that they "can't" do yoga (too unfit or whatever) or that they can't sit still for meditation, you are wrong. You have to find the right kind of yoga. The right kind of meditation. And by "right" I mean what works for you and your body. I practice Yin Yoga and Restorative Yoga (until I'm ready for something faster) because they are both slower practices that focus on healing the parts of my body that I know need healing. And when I meditate, I lay or sit in a position that is comfortable and let all my bodily twitches just happen because I have to learn to let go of control of those things. (Live in the chaos, be in stillness)

We show our love to the ones we love by listening to them. Considering their needs and doing what we can to fulfill those needs. Like the quote above says, yoga is about listening to your body. Why not stop for a moment and listen to what your body is telling you and give yourself the love you deserve?

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The clock is still ticking violently. The sun still hasn't come up. My husband is still asleep. And I know that it's going to be a long, busy day where I may get cranky because I haven't slept. Despite this, I am happy, because if THIS is as chaotic as it's going to get, then I have so much to be thankful for. (And that is what yoga can do)


(Disclaimer: I am not a yoga teacher/master etc. I have a lot to learn and understand. This is just the beginning of the journey for me and this is what I've learned so far, I just hope to share what I know and dispel preconceived notions of what it means to practice yoga and meditation) 

Keeping Up with the New Girl: SVU

“So, please, oh please, we beg, we pray, go throw your TV set away, and in its place you can install, a lovely bookcase on the wall.” 
― Roald Dahl

Living with a chronic illness that flares up unpredictably and at times with a vengeance means you can count on doing one thing: watching A LOT of TV. Sure, you can "attempt" to read, but usually one is too distracted by the pain or has to sit/lay in awkward positions in order to stifle the pain/discomfort, rendering reading impossible.

So, to keep from going insane, you invest in NetFlix, Xbox Movies, HBO, Showtime and 200+ satellite network channels. Which means, you succumb yourself at times to the trashiest most mind numbing and mundane crap that gets broadcast all to escape from your own unbearable reality.

The last two weeks I've experienced a couple of flares that have left me bed/couch-ridden for most of the day and I've come to realize Lupe and I have what it takes to have our own TV show, reality, fiction or otherwise.  Of the nonsense that gets televised, only about 10% of it is actually worth watching, 70% is inane, trivial BS that makes money, and the other 20% is religious or infomercial based. I've realized that all you need to get viewers is a slightly unrealistic blend of  high-stakes, fabricated drama with a touch of obnoxious or 7th grade humor.

Lupe and I have all of that- and then some.

1. Like Guilana and Bill, Lupe and I would like to have kids but keep hitting roadblocks in our journey. I, like Guiliana have had health problems, been sent to the ER multiple times and advocate for others who have been through what I have been through. Lupe, like Bill, is a public speaker/motivator and overall awesome hubby who supports me and my shenanigans at all costs.

2. Like Jess from New Girl, I make up songs about EVERYTHING. Especially when I'm happy. And I like to speak in a British accent that no one can understand and that Lupe hates. Both she and I are teachers, and though I don't share an apartment with a bunch of dudes, I always hang out with Lupe's friends who are often very much like those guys on the show.

3. Lupe and his friends often sound like the nerds from Big Bang Theory. (Enough said)

4. Lupe and I let our dog Whiskey lick our faces like Ice and Coco. I also have crazy ideas and projects like Coco that could make for good entertainment. Like attempting to make gluten-free pizza crust (epic fail). Or deciding to go to a water park where all I can actually physically do is go on the lazy river because I can't climb all the stairs to go down the water slides. (womp womp)

5. Like SVU- we've often heard gun shots outside our window. (true story)

6. Like the infamous YouTube videos: Shit Girls Say, most of my sentences to Lupe begin with- "Honey can you do me a favor?"

7. Like any other happy married couple we bicker and fight about every unimportant thing under the sun: putting the toilet paper on the roll, washing the dishes, leaving clothes in the living room, earrings on the floor, walking/feeding/bathing the dog, directions, the weather, what's for dinner and hygiene. Add to that a couple hours a day of me being a quite hilariously drug-induced haze, stressful often dramatic and/or tear jerking and inspiring hospital visits, and two sets of cute parents that are overtly Mexican and Dominican and you've got hit show.

As you can see we have a an amazing array of dramatic and comedic experiences and moments that would make for what the general population considers entertaining TV. All we need now are a few cameras set up in random locations, a couple dozen sponsors and a makeup-artist or two to make us attractive to the general public. We are likeable, interesting and best of all I'm pretty sure we'd be the first Hispanic couple to have their own reality TV show. I mean c'mon a Dominican and a Mexican in ONE show?! We'd appeal to the massess!

But, since there aren't any producers knocking on our door, and because I don't really trust anyone else with my life story, I think we'll both stick to writing our stories for now. Because at least in our writing, we're the ones doing the editing and not anyone else.