The Times, They Are a'Changin'

It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change.
Charles Darwin 

It's a quiet Sunday morning at the Mendez residence. Lupe and Whiskey are sound asleep next to me and even though I have a lot on my mind I am at peace. I reached several milestones in my writing career this week which I am happy to share with you all before getting to my topic of change. 

Please check out my guest blog posts at www.invisibleillnessweek.com! They are revised versions of posts I've shared on here but still worth taking a look at and sharing with others.

1. I Am Too Young for this Waiting Room
2. How I'm Really Feeling  (451 views and counting!)

A little background on Invisible Illness Awareness Week, it's an internationally recognized platform and website that tackles the social, mental, physical and emotional aspects of living with a chronic/invisible illness. Articles, webinars, chats, and discussion forums focus on a variety of topics to help those who suffer with these illness better cope and find hope. I found it last year after my ICU stint and it literally changed and saved my life. It's what propelled and encouraged me to quit working full time, to get back to writing, to take care of myself and to try to find a way to work from home. The site, the articles and the wonderful women on that site gave me the courage to change my life, so for me to be a part of it this year and be a contributing writing/guest blogger is a HUGE deal in my book of accomplishments. I hope to continue being able to contribute to this wonderful organization and cause and I'm incredibly proud of myself for having the courage to submit my articles and share my story. 

Secondly, (because I HAVE to brag about it)...I finally finished the edits to my book! It was a daunting and scary moment when I hit the "send" button, but it's done. Now on to the next phase...will keep you posted!

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The seasons change. The time changes. People change. We change. If you said the word enough it begins to lose its meaning. It begins to sound like the restless change in your

pocket after a long day. It sticks to the roof of your mouth, jingles in the purse of your future and makes your hands stink. Most people don't like change. Most people are afraid of change. But without it, we cannot survive. I have seen relationships end and be shattered because one person changed and the other one couldn't/didn't or simply wouldn't. I have seen people lose their jobs because they couldn't keep up with the changes that were happening all around them. I have seen friends fall into a deep depression because they couldn't accept that their bodies and their lives were changing when they just wanted everything to be as it once was. 

But change is inevitable. Change is necessary. But where does one begin? Where does change begin? I have found only one answer that satisfies me: When we change our mind, we can change our life. When we change A mind, we can change A life. As I've mentioned before, I have given up on changing the world, it's too stressful. Instead, I find joy and satisfaction in trying to change minds, one mind at a time. 

And trust me, this is no easy task. 

I am constantly struggling to change my own mind, my own negative and self-destructive thoughts. 

I can't do this because...

I'm too tired to do this because...

I hate that I can't.....

Why is this happening to me again....

When will it end....

My body is broken and....

Change takes patience. Change takes practice. It does not happen over night. (While some drastic and dramatic changes CAN happen spontaneously...ie. a disabling car accident or injury) Our acceptance of change is gradual and must come from within before we can see the changes without. It is not enough to change our actions, we must change the mentality that accompanies those actions if we are to experience true growth and a real, long lasting and meaningful transformation. 

It is important and necessary to change the mind first so that the rest can follow. I truly believe that all physical and even emotional ailments begin first with the mind and then manifest itself in the body and in our lives. What we think consciously and subconsciously WILL manifest itself in our bodies and/or our daily experiences. Changing our thought patterns isn't easy and it takes willpower and determination, but it can be done. 

I have managed to change many things about my life in the past year including my diet, exercise regimen, fear of failure, patience, risk taking etc. But I know I still have a long way to go, it is a journey, a process, one that will never end because I know that I will continue to encounter obstacles and challenges and circumstances that will require me to adapt and change again, and again and again. 

I don't know where this disease will take me, I don't know how many more ways it may change my body or my lifestyle. I know that my meds may change from one month to the next. I know that my ability to use my hands, legs, feet, mouth or body may change from one year to the next. But despite all the changes that happen to me, I know that I make those changes work for me as long as I make the mindful decision to do so. 

I will accept the changes happening to my right hand by using my left hand more and being grateful that my left hand is strong enough to carry the burden. 

I will accept that my thyroid isn't functioning well and take it as an opportunity to learn more about how to keep it balanced. 

I will change the way I deal with my fertility issues by learning to be patient and by finding ways to mother myself while I wait for the opportunity to mother a child. 

All of these things and more require attention and perseverance. It is not an easy fight, but I do want to have it all (health, a family, a career, good friends, happiness) and I know that I can have it all because it's all worth having and anything worth having, is worth fighting especially if it changes us for the better, inside and out. 

Summer Summary

We know that in September, we will wander through the warm winds of summer's wreckage. We will welcome summer's ghost.
Henry Rollins 

It has been over 3 months since my last post. And for that I am truly sorry to any and all of my readers that were loyal. I hope that you can come back to my blog after such a long absence and still find something of interest, joy, and/or inspiration as I attempt to return to these pages on a more regular basis. 

As I'm sure you assume, a great deal has happened both good and bad these past summer months and I will give you a brief run down but spare you the agonizing self discoveries and "ah-ha" moments that accompanied them as they are gone with the hot summer winds now. I will however, leave you with a poem that came about because of my summer adventures in an effort to redeem myself from the lack of posts and to shed, if only a little light, on my growth and thoughts these past few months. 

Summer Recap:
June:
1. Went to the Dominican Republic, as promised, and gave school supplies to the students at the school my grandfather is named after. It was an incredible SUCCESS! The students even wrote poems and shared them with us, it was a greater and more intense experience than I could ever have imagined. I felt incredibly blessed to be the granddaughter of such an amazing man and educator. 

2. Worked way too hard and stressed myself out too much. (Not good, more on that later)

3. Diagnosed with Hypothyroidism..had a mini meltdown about it, started the drugs, feeling better already!

July:
1. Sister got married!! It was a beautiful wedding, that I pretty much coordinated, which left me bed-ridden for two days but it was SO worth it! My sister was gorgeous, we had a blast and I would do it all over again if it meant it made her happy. 

2. Still working too hard, no real breaks- ended up in the hospital at the end of the month with a relapse. (Fluid and inflammation around my heart again-womp womp) Back on high dose steroids and Imuran- yuck. Hubby forced me to the ER despite my protestations and I love him for it, he always knows how to save my life, even if at the risk of his own sanity. :) 

August:
1. Wrote some poetry and shared it with others. (First time in MONTHS) Everyone loved it and gave me really good compliments, feeling energized by it and may just continue to attend poetry readings again. I do miss it, but it still makes me very anxious, so...BABY STEPS. 

2. Now I'm dealing with some kind of entrapped nerve in my right arm that has me learning how to be ambidextrous by force. If it's not one thing, it's another..but I really feel like I'm managing and dealing with all this better than I would a year ago..I thank yoga for that. 

3. Working on the final edits of my book so I'm hoping it will be out by early next year!!! :) 

And that's pretty much the good, the bad and the "meh." Invisible Illness Awareness Week is coming up and I have submitted some articles to be included, so wish me luck. If they get accepted I'll be sure to share the links.

Now, here's that poem I promised and next week, I promise to be more insightful. :) Enjoy!

Heart Dis-ease

More women than men 

die 

of heart disease 

each year.

Thump thump

Thump thump

The heart

does not

Actually

Ever

Break

It beats                                                                                                                                    

It pumps

It pushes

And pulls

But the heart

Does not

Actually ever

Break

Four chambers

Left and right

300 grams

a small fist

full of

Blood

Thump thump

I was 13 once

I felt it throb

I felt it ache

Because

He didn’t love me

Unrequited romance

Left me daydreaming

With Cardiovascular

Convulsions that

Threatened to take

My breath away

But the heart

Does not

Actually ever

Break

Like a drum

Doesn’t stop

Only skips a

Beat

Heart disease is the leading cause 

of death 

in American women

Thump thump

Thump thump

I lost someone

Someone I loved

In the ground

Only the sound

Of my own

Life force

Throbbing

Throbbing

In my

Ears

Thump thump

And the heart

That won’t actually

Ever

Break

100 Beats per

minute

pericardial

pericarditis

fluid

flowing

from mechanized

membranes

And there were

Tubes

Tied to the

Failing rhythm

Of the tamponade

Cardiac cavity

That thrummed

And strummed

Beneath my hospital

Sheets

Tachycardia

Trauma

Left untreated

And my heart

That didn’t actually

Ever break

Hispanic women are likely 

to develop heart disease 

10 years earlier 

than Caucasian women

Thump thump

Thump thump

Thump thump

Thump thump

It beats

It pumps

It pushes

It pulls

It tugs

At strings

It tightens

It tenses

It hurts

It aches

But the heart

Doesn’t

Actually

 Ever Break

Thump thump

Thump thump

You left

I cried

It grew fonder

A palpitating

Presence

That pumped in my

Pupils

And shivered down

My spine

Sending electrical

Shocks and spasms

To the left and right

Viscous ventricles now

Filled with regret

And pumped

Through the heart

That

Pushed

And pulled

Whimpered and

Weakened

But didn’t actually

Ever

Break

Women with a history of heart disease 

are more likely to suffer

 from depression

Thump thump

thump thump 

I rocked a child

Once

Left and right

In my womb

Of the heart

They found

Not a trace

Not a face

Not a name

Was given

To the silent hum

Of the funeral drum

for the life that never

Was

Thump thump

Thump thump

Thump thump

Thump thump

It beats

It pumps

It pushes

It pulls

It beats

It pumps

It pushes

It pulls

It hurts

It aches

It stops

But the heart

Does not actually

Ever

Break.

Facebook: Friend or Foe?

"When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand."Henri Nouwen 

"One of the most beautiful qualities of true friendship is to understand and to be understood."
Lucius Annaeus Seneca 

Welcome back to me! Hope you didn't miss me too much, and I promise not to be away for so long again. It has been a month filled with work, social engagements, wedding planning(my lil sis), catching up with old and new friends, yogaing, meditating, acupuncture, thrifting, editing, dieting and on and on the list goes. But, no more excuses. 

On to the good stuff- I finally found something to write about! One of my addictions and guilty pleasures: Facebook. 

It is no mystery that there is a lot of debate about the worth/value and validity of Facebook and other social networking sites. People complain that they don't want to hear about how many lattes you've had, or what amazing thing your kid did, or how much you hate Obama or guns. Everyone knows social media and the internet are changing social behaviors and norms. No one wants their kids attached to their phones and iPads day and night. 

But alas, here we are and what is to be done? Accept, embrace and use it with moderation much like everything else? Hate it and destroy or bastardize it like every other thing else? Let it die on its own till something better comes along? 

Who knows? I don't have the answer, and truth be told, in the greater scheme of my life I don't really care about "el que diran" (what they'll say) about el Facebook. 

What I know, is that Facebook and other social networking sites like it that I have connected myself to, have been the saving grace to the psychological and emotional struggles I've been faced with while trying to manage my illnesses. 

If I had been diagnosed with scleroderma or lupus "back in the day" in my early teens, I wouldn't have known where turn. All I would know of support would've been my family. And as supportive, loving and wonderful as they are, no one truly understands what it's like until they've lived it. Facebook, has provided me with the support system needed to emotionally, and psychologically survive chronic illness. 

I have been able to connect with and meet people from all over the world struggling with various auto-immune diseases and ask for advice, offer support, share recipes, medication advice, laughter, tears, joy, setbacks, progress and dreams. Something that was close to impossible even 6 years ago when I was first diagnosed. (I know this because I desperately tried to find others like me and only found 2 people who emailed me)

With blogs like my own, FB pages, websites, online support groups, Skype etc., I have and know an amazing group of people at varying stages in their illness and recovery that I know I can talk to when I just need a someone who understands. Someone who isn't going to judge me or question my pain. Someone who isn't going to tell me it's going to be ok cause hell, it might not be, and they know that from experience. Many someones who have put their whole life on hold (my age and even younger) to give themselves the time they need just to feel better. 

And, I know, is everyone's status update their reality? Probably not. But I sure as hell do appreciate that THE most positive people I know are the ones going through the worst hell. They're my sclero family, most of whom have undergone some form of chemo, transplant(organ and/or stem cell), physical therapy etc. and are still smiling in every picture, praising God every morning, and checking in on ME at least once a week. My chronic illness and auto-immune buddies give me strength when I have none because I know I'm one of the lucky ones. I finished college. I've been able to work. I found someone to love me. I can afford my meds and the best doctor's in the country. I breathe on my own. I walk on my own. I still have the use of 90% of my hands. They haven't given up, so neither should I. 

Has Facebook and Twitter made us all self-involved and self-important? Perhaps. Does posting your every  thought, meal, and bowel movement really matter to anyone? Not really. Have we created a culture where privacy is obsolete and common decency a thing of the past? Maybe. 

But at the end of my day, when my muscles are sore and my joints ache, if I want a warm smile or an encouraging word, all I have to do is open my laptop and log on.  And if that's the only thing Facebook is good for, that's good enough for me. 

Foreboding Joy/Cautiously Happy

“When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” 
― Kahlil Gibran

Hello again! I have returned..at least for now. And I come bearing good news.  The last month has been a whirlwind of new experiences, fun times and dreams come true.

The most exciting event that has occurred is…drumroll please…

 

My memoir: Mami, the Island & Me is getting published by FloriCanto Press! I am currently in the process of editing it and polishing it up to send back to them by the end of the month. There’s no word on when the book will actually be released, and I know that publishing can be a slow and long process, but I am optimistic and excited. Thanks to everyone who has supported my writing efforts, and

believed in me all these years.

When I read the acceptance email, I quite nearly had a panic attack. I paced in my kitchen back and forth, hyperventilating and crying tears of joy. I don’t think I’ve ever felt more excited about anything in my life. (My wedding day was beautiful and wonderful in it’s own way, a different kind of joy).  I have dreamed about this since the age of 13, when it was an elusive, unachievable fantasy. Much like winning a Tony or appearing on Oprah.

In that moment, it really felt like all the hospital visits, the personal and professional sacrifices and time that I had given finally mattered. I knew deep down I always wanted this to happen, and I truly believed it would. But now that it has, it still feels a little unreal. And, because my life has not been a “crystal stair,” I quickly began to fear the worst.

Now that my book is getting published- My lungs are going to collapse.

Now that my book is getting published- My husband is going to die.

Now that my book is getting published- I’m going to get cancer.

Now that my book is getting published – My house will catch on fire.

Now that my book is getting published-  My scleroderma symptoms will return and I’ll be bedridden for life.

My tears of joy and my elation quickly transformed to angst and fear. The last time I felt this kind of joy, it was ripped out of me (quite literally) and taken away. The last time I felt this kind of joy I was pregnant, and then, I was not.

I began to question everything. It’s what a friend of mine calls “foreboding joy.”

What if they rethink they’re answer and say no?

What if I don’t sell any books?

What if I get horrible reviews?

What if it’s a great success and then everything else I write is measured by THIS?

What if I succeed and can’t handle it?

Do I really deserve this?

When will it be taken away?

I had to take a moment and just step back from it all. I had to separate my past from my hopeful future and just accept the present. A lesson my yoga and meditation practice has been desperately trying to teach me for the last 8 months.  So, I sat at my computer, re read the email, and just smiled.  I told my husband and my mom and asked them not to share the news with anyone. I wanted to enjoy it privately for just a little while, just in case…

When I told my husband about my initial fears and anguish, he told me something that put it all in perspective (I love that about him, he always makes everything better). He said:

“Honey, even the house does catch fire. Even if you do end up in the hospital, or get cancer, or whatever. Even if any or all or none of those things happen, it doesn’t change the fact that your book is getting published.”

And it hit me, there are some things in this life that can’t be taken away. I’ve known this about my education and my talents and skills, but I had yet to wrap my brain around it for my other dreams. No matter what tragic life events occur around me, there are certain life affirming events and milestones that will and can remain constant.

I am married to a man who loves me.

My parents support and love me everyday.

I know what my purpose in this life is, and I try to live it everyday.

My words, my life and my presence have inspired hundreds of people.

It no longer mattered if I sold 10 or 10,000 copies. I know my words will reach someone, and hopefully that someone will be changed because of it.  The fact that it’s going to get published is the greatest success of all, and what comes after is just a footnote, not the whole story.

Life has an interesting if not cynical way of working itself out (if you let it), and I think I finally just let go and let it. I finally truly listened to what my body was trying to tell me and I rested. I responded to my gut instincts by taking the time write while I gave my body time to rest. I took a risk and submitted my manuscript because I had to. You can call it God, the universe, divine intervention, whatever you want, but something greater than me guided me down this path and insisted that I pursue this dream. If not for myself, then for others whose lives might be changed because of it.

If only because, I remember when I first read “When I Was Puerto Rican, “ and Miguel Pinero’s “Seeking the Cause,” and how I finally felt like someone understood ME. That my story and my history was being told. That I was not alone in this world after all.

This first memoir is my baby. It is in recognition and in honor of the miracle of life that has been granted to me, on more than one occasion, when my illness could have wrecked havoc on my own dissipating body, but I fought it tooth and nail. 

This memoir is the concrete representation and metaphorical symbol for my own rebirth and awakening. Writing and publishing a book may not seem as miraculous as birthing a child, but for me, it has been and will continue to be a labor of love.