Sunday, December 30, 2012

You Had Me At Hello

Drop the last year into the silent limbo of the past. Let it go, for it was imperfect, and thank God that it can go. - Brooks Atkinson

As I'm sure you noticed, I have been on a mini vacation the last couple of weeks. With the holiday season upon us (now coming to a close) I became very busy with arduous tasks such as shopping, cleaning, traveling, cooking etc. It all left me very tired and with little to no mental energy for writing.

I am back this week, however just to wish you all a very Happy Holiday season and a blissful New Year. The last few months I have shared what this year has been like for me, so I do not feel the need to reopen old wounds. If you've kept up with my blog or with me on a personal basis, you know all too well what my ups and downs have been this year and now, I am just happy to see them all go.

I want to say goodbye to the good because if the good stuff happens again I want it to feel like the first time so I can enjoy it naively, innocently with joy, awe and wonder.

I want to say goodbye to the bad because, well it was bad and I want to forget the pain, the tears and the sorrow. Not what I learned from it, but just how much it hurt.

I want to say goodbye to the ugly because I know that there is so much beauty in the world and I refuse to let the ugly control or define me.

In 2013 I hope to say hello to many things including:

In 2013 I want to say hello to a new job: Learning Strategies and Development Specialist with the Jesuit Virtual Learning Academy. I start Jan 7th! However, I understand that it will require learning new things and being very patient with myself, but I am ready for the challenge.

In 2013 I want to say hello to new friends and old friends whose lives are changing drastically. Know that I want to be there for you even though your uphill battle will not be an easy one.

In 2013 I want to say hello to better health, with the understanding that on a daily basis the definition of "better health" will change, and accepting that that's ok.

In 2013 I want to say hello to new experiences and forgotten, unfulfilled dreams.

Finally, I want to say hello to 2013 without the foolish expectation that it will be any better than any other year. I am thankful and blessed to simply say: "Hello."

Monday, December 17, 2012

Do You Hear What I Hear?

We need to find God, and he cannot be found in noise and restlessness. God is the friend of silence. See how nature - trees, flowers, grass- grows in silence; see the stars, the moon and the sun, how they move in silence... We need silence to be able to touch souls. 
Mother Teresa 

I have been accused of being an "over sharer." And truth be told, I plead guilty. My constant Facebook status updates, my weekly (very personal) blog, and my incessant word vomit during every day conversations confirms this accusation. At first I was offended by this label, but the more I thought about the more I accepted and embraced it. 

You see, in my mind, the only way I can be a true advocate for myself, my disease(s) and those who suffer on a daily basis like I do, is to be an "over sharer." The way I see it, since the media isn't shoving it in people's faces like they do everything else, then I have to. My pain, my reality, my normal aren't going to go away just because you stop listening.  

However, I also recently discovered the power of silence. Sometimes in our lives we need to share less and listen more. This doesn't mean that I will stop blogging, or writing my memoir or even posting updates. It simply means that I am more aware of how much I share and how often. I am slowly learning that a good listener can be just as influential as a good speaker. 

There are two areas in my life where I have decided to speak less and embrace the silence: My personal life and my prayer life. 

My Personal Life: 

The realization that perhaps I need to shut-up more often came to me while having dinner with a few friends. I knew one of the girls I was dining with and she brought her sister to meet me. Her sister also has Lupus. We all wanted to get together to chat and share our experiences in order to feel connected, validated and like we weren't alone in this hellish battle. However, by the end of the night, I realized that while they both now knew my whole life story, I knew almost nothing of theirs. I had chatted almost the whole night and had rarely paused to ask any questions. I thought to myself: "Did I share too much?" "Do they even care how many pills I take?" "Why did I even mention the miscarriage?" "Why was she so quiet when I asked about her symptoms?" "Am I the crazy one for talking so freely about my illness?" 

This is not the first time this has happened to me. I have met with other young women who are diagnosed with one auto-immune disease or another and I always share more than they do. In my head I have rationalized this by believing that not everyone is as comfortable with their illness as I am. Not everyone is ready to air out their dirty laundry like I am. And that if I just keep talking about all the terrible times I've been through they'll think I'm strong. They'll think I'm a survivor. 

But the truth is, if I'd just taken even 30 seconds to close my mouth and listen I might have learned something. I might have truly made a connection with these ladies instead of simply trying to gain their approval. 

As important as it is to me to share my story with others, I need to not forget that their stories are just as important. Just as meaningful and inspiring. I've realized that I will probably impact more lives if I spend more time listening to their stories rather than sharing my own.

My Prayer Life: 

In my meditation practice and in my prayers I have also found that I am doing way too much "blah blah blah." In my head, all my words, thoughts, prayers etc are so loud and redundant. I ask God for things, I talk myself through my meditation practice and repeat my mantra over and over and yet I still feel a lack of peace in my life. I still feel like I'm missing a true connection with God. 

To remedy this situation, I came to the conclusion that I need to do less talking to God and more listening. Both in prayer and in meditation. Perhaps He's been trying to tell me things and I've just been too busy chatting away to hear Him. I need to embrace and accept the silence within me in order to hear God's and the Universe's words. I need to stop asking for health and wealth. I need to stop divulging all my fears and concerns. God knows all of these things already. He knows the desires of my heart. So, instead of talk talk talk talking my way to peace and prosperity, I will simply be thankful for what I do have, and wait silently for the rest. 


Sometimes I share too much because I don't want people to forget what I'm going through. Sometimes I share too much because I'm nervous or anxious and I want to hear comforting words. Sometimes I share too much because I fear that being silent would mean I have given up. 

But I've learned that with silence comes strength. The strength to listen without judgement or prejudice. The strength to carefully distinguish between what needs to be spoken and what can be left unsaid. The strength to let go and be still. 

Monday, December 3, 2012

"Side Street" Spouses

A long marriage is two people trying to dance a duet and two solos at the same time.  ~Anne Taylor Fleming 

“Her mind traveled crooked streets and aimless goat paths, arriving sometimes at profundity, other times at the revelations of a three-year-old." 
-Toni Morrison 

As I drove my overly-medicated self to the Dr.'s office last Thursday, I found myself taking back roads and side streets to get there. I chose this because I did not trust myself on the freeway. For some reason my meds decided to kick my ass that day and I was not feeling particularly alert or energetic enough to brave the Houston freeway. I felt lethargic all morning, my face had acquired the numbness of a cold winter's day (it was 78 degrees outside), and my head was swimming. All I had been able to do that morning was stare at the wall and zone out or sleep. 

So, of course, the responsible adult in me decided to take side streets half way across town. Which fortunately, in Houston, is quite easy to do. You really don't need to get on a freeway to get anywhere...except perhaps Humble...but I've never been out that far so I wouldn't know.  

As I drove through each stoplight and pothole (the main disadvantages of taking side streets in this town) I realized that I wouldn't know half of those roads were it not for my husband Lupe. He is notorious for taking side streets wherever we go, And I say "notorious" because HE does it at the most inconvenient times, like when we're in a rush to go see a movie. Or when we're already late to meet friends for dinner. He says it's because he's avoiding traffic and it's "faster." I used to argue with him about his "it's faster" defense, but I have found that I'm better off keeping my mouth shut and avoiding a raise in my blood pressure. Besides, it's better to get there late rather than never. 

Although, I am usually annoyed by his "side street" route taking, I found that I was uber thankful for this habit of his on Thursday. Because without him and his frustrating habit, I would not have made it to my Dr.'s appointment on my own.  

While at the doctor's office I thought about how the side streets we often forget to take are like the spouses/partners of those of us who live with chronic illness/pain. (Of course I think these things, I'm a writer) Those of us who are ill are the major freeway, always hustling and bustling. So much going on with pills, prescriptions, appointments, allergens, pain, progress etc. etc. Our spouses/partners (if they are good to us) take care of us, support us and love us despite it all. They celebrate our pain free days with us, and comfort us during our darkest nights. 

BUT, after all is said and done, what about them? We must not forget that they too have goals, dreams, heartache and hopes for their own future. That they too accomplish so much on an every day basis and it is our responsibility as a spouse/partner to celebrate those accomplishments in whatever way we can. We cannot risk losing our marriages/relationships because it all becomes about us all the time. 

For example, Lupe is an accomplished writer and a great teacher. On his best days he is getting published or being asked to read at a local University, or coffee shop. I do my best to celebrate these successes by attending the reading or baking his favorite dessert. If I don't have the energy to do either of those I send a simple congratulatory note on Facebook or via text. It's not much but he knows I'm listening and I care. 

On his worst days, he feels like a failed teacher or an incompetent writer and sulks by playing video games or fishing for compliments. So, I give him compliments, don't complain about the endless hours of Left for Dead game playing and again I bake something just for him. I give him hugs despite my self-proclaimed claustrophobia and strong aversion to hugs. (Because sometimes he squeezes too hard and my tender muscles ache and hurt when he does that) 

On his great days and horrible days I try to not bring up Scleroderma, or the side-effects or anything about me. I realize, during those times that the chronic illness freeway is closed and our marriage MUST take a detour on the side street of his life/his needs in order to survive. 

In my mind, I hear the GPS lady saying "recalculating...recalculating" and I know what I have to do.  

I change our usual route and head straight for the back roads and side streets,  and in the end I am always happy that I did. 

Sunday, November 25, 2012

The Remission Myth

"Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out."- V.C.

In the complex land of the chronically ill the word "remission" is thrown around a lot like candy shooting out of a pinata. Everyone wants it and you'll fight even your best friend for a  piece. Scrambling around, excited, scared, and hopeful we reach out blindly trying the latest drug, treatment plan or diet. And so we fall to the floor despite our dignity in what becomes another vain attempt to rise up triumphant.  All too often, like the kid at the party who was just too small, or too slow, or too weak, we are left holding a only few blades of grass and our disappointment. No candy. No remission. 

For those of you still unfamiliar with the terms "remission" or "flare," here's a little Chronically Ill Vocab 101 to put things in perspective: 

1. Chronically Ill- you are sick now, have been sick for months and will continue to be sick for the rest of your life. 
2. "Sick"- does NOT mean the flu. It can consist of muscle, joint, skin or internal pain. It can consist of swelling, fatigue, brain fog and many many other things. 
3. Auto-Immune- Your body is attacking itself. It cannot distinguish between healthy cells and normal cells so basically it's just raping them all and wrecking havoc on whatever it feels like. 
4. Flare- When a chronically ill person gets worse. Symptoms are heightened or those that were dormant come back. 
5. Remission- a time period in a chronically ill person's life when he/she is symptom free for a prolonged period of time (technically the person will be symptom free AND medication free- that is the TRUE meaning of remission) 
6. Cure- ha...that's funny. 


I have heard many of my fellow chronically ill blogger and FB friends bring up and talk about remission. For themselves. For me. For others. But the truth is, after MY last flare, I have given up on hoping for remission. I have given up on working towards remission. Remission is a myth.  

Now, for those of you ready to throw your computer across the room and yell at me and tell me that I'm a cold, hopeless bitch...please read on to understand why I feel this way. 

The myth goes like this: 

Disease meets person. 
Disease attacks person. 
Person fights back with a gun.
Person gets tired. 
Disease keeps attacking. 
Person fights back with a sword. 
Disease slows down. 
Person meets Remission and falls in love.
Disease hides in the corner watching the love story.
Person fights back less.
Disease returns with a vengeance and steals Remission.
Person fights with gun and a sword to take back his/her lover.
Disease laughs and runs off with Remission into the sunset. 
Person is left with the scars. 

Now, I know this sounds bleak...BUT this is what the remission myth does to the psyche of the chronically ill said person. 

You see, after my last flare I've had a lot of time to put things into perspective and understand where I went wrong and how I could have let it get so bad. What happened is that I was working so hard to go into remission that I failed to recognize the signs and symptoms of shit hitting the fan. I also failed to enjoy my life because the only thing I cared about was getting better. Making the disease disappear. That, my friends, is no way to live. 

Instead of working towards remission (because I've said it before and I'll say it again, this is NOT cancer. There is no cure. "Remission" is as close as we're going to get.) because we all just assume it's better than where we're at, I am going to enjoy where I'm at as much as I can. Who says remission is going to be better? I'd much rather learn how to live the best life I've been given and know that I lived everyday serving my purpose. Why live for an uncertain future when you can have all the happiness you choose to accept in the present? 

I didn't stop working towards remission because I failed. I have stopped working towards remission because I already have enough scars. I have accepted that this is my life, and dammit, I'm going to make a good one. I still work hard everyday to live as pain free as I can but the future of my pain is not my number one concern, the rest of my life is. 

In the chronically ill world we have replaced the word "cure" with the word "remission" and many of us have suffered for it. We are not going to be survivors because these illnesses are for life. Whether they kill us or not, you don't "survive" Lupus or Rheumatoid Arthritis. You live with it. Until the day you die. We should not hope for an elusive act of magic or divine intervention. Instead we should be certain that we are where we were meant to be and that our lives and our dreams have a purpose. At the end of every day we should only hope that tomorrow we are able to wake up and do it all over again regardless of how many pills/naps/accupunture treatments it takes. 

Sunday, November 18, 2012

Work At Home Woes/Wonders

"Life for both sexes — is arduous, difficult, a perpetual struggle. It calls for gigantic courage and strength. More than anything, perhaps, creatures of illusion as we are, it calls for confidence in oneself. Without self-confidence we are as babes in the cradle." -Virginia Woolf (A Room of One's Own)

Over the last two weeks I have had the priveledge and arduous task of explaining multiple times to multiple people what it is I "do" for a living." I know I have brought this up before, but as I myself try to solidify my work at home career, I am finding it difficult and quite annoying to have to explain what it is that I do from the "comfort" of my home.  

When I tell people that I work from home they want to know what I do there. It is not sufficient enough to say simply "I work from home." People want details, but I feel that one simple label or title won't do all of the things I "do" justice. I am beginning to feel quite isolated on this journey, if only because unlike everyone else's chosen careers, my reasons for choosing this lifestyle cannot be adequately explained in a 2 minute conversation to the barista at Starbucks. 

My isolation deepens when even the websites that are dedicated to supporting individuals who work from home, only cater to one of the following two groups: "work at home MOMS" or "work at home business MEN." It seems that those are the only people for whom it is acceptable to work from home. I am not a mom or a business man. As a young, married, childless, seemingly healthy woman, my "work at home" status is seen as a luxury to most. People's eyes widen and make comments like: "Oh wow, that must be nice. I wish I could do that." or "Oh, do you get to work in your pajamas?" 

The truth is this: Yes, on some days it IS nice to sleep in just a little longer. And YES I do sometimes work in my pajamas. BUT there are also a few other things to be aware of. Things that I myself wasn't even aware of until recently. I do not wish to be envied or judged. I want to be understood and validated. Although I don't get in my car and fight traffic to sit in a cubicle or stand in front of a white board to teach indifferent children, does not mean I have it "easy." 

1. To be a successful work at home individual you MUST have self-discipline. You have to get up every morning and pretend as if you actually do have somewhere to go and "get ready" just like a "normal" person. Whether you go to an office space, a different part of the house, a coffee shop etc. You and only you control what and how much work you get done in a day and that requires discipline. 

2. If you are working from a home office...guess what? You are the IT guy, the HR department, the administrative assistant etc. etc. etc. I learned this the hard way this past week when my internet modem busted and I was...yes...God forbid it...disconnected from the internet! Instead of getting ANY work done, I actually missed an online tutoring session and had to cancel a meeting because I spent all morning on the phone with AT&T. Followed by THREE trips to Target because I bought the wrong piece of equipment the first two times. All this began at 8:15am...I was not reconnected to the land of the living until 12:30pm. At which point I gave up on "working" for the day and cleaned the house instead. So you see, there is actually a great deal of responsibility and a HUGE learning curve that comes with working from home. You have to learn how to do it all yourself. 

3. It is a necessity not a luxury for those of us who suffer from chronic illness or pain to have flexibility in our lives. Working at home provides me with the flexibility I need to address my medical needs and take care of myself the way I need to. Just last week I had to make a trip to the ER because of chronic dizzy spells and shortness of breath. Although I really did not want to spend a whole afternoon and night in the hospital, I knew that I would rather be safe than sorry. So, I packed a backpack with my laptop, my to do list, my pills and my medical records. For the first time ever I felt no guilt about putting myself first because I knew I would have time in the ER waiting room to work on work. I was not letting anyone down, including myself.  

4. I am fully aware that it is not acceptable in most social circles to say "I am a housewife." It IS ok to say "I'm a stay at home mom." But the truth is, I am a housewife and that is part of the work that I do at home. I am proud to be a good housewife (although the feminist 16 year old in me would cringe at the thought). It takes skill, energy and love to make healthy meals my husband and I can enjoy and feel good about. It's important to me to live in a home that is clean and clutter free because it helps me think and be creative. I may not earn a paycheck for doing those things but I am fulfilled and happy and that's worth more than the 401k my 20 something friends stress about. 

5. I have decided that my work at home status allows me to change my job description at my will. Some days I am online tutor. Some days I am a freelance writer. Some days I am a curriculum specialist. Because on any given day I am doing one or even all three of those things. This fact makes me perhaps more talented and interesting than anyone who treks to work every day, drinking the same cup of coffee while listening to the same NPR broadcast willing it to be Friday already. And although I don't have to shower to do any of these things if I don't want to, I still take pride in the work I do and I expect it to be respected. 

I know the general society may never fully accept or understand what I do or why I chose to go this route. Hell, family members are still asking me what I "intend" to do for work. Or what about my "career." I know that I have to ignore their comments and explain that I still have a career and that I am still working, it's just in a different way. It's in a way that makes sense for me and for what has become my "normal." A normal that involves a lot of pills, blood pressure monitoring, a strict diet, time for exercise, meditation, doctor's visits, ER trips and naps in the middle of the day. A lifestyle that is not dictated by a 9 to 5 or 7 to 4 5 day a week job. A lifestyle that allows ME to be in control of my health and my illness and not the other way around. 

Sunday, November 11, 2012

Listmaker, Listmaker Make Me a List

We like lists because we don't want to die. 
Umberto Eco 

The Holidays are almost upon us. Yes, that quickly. Thanksgiving is literally around the corner and I had a mini freak out about it just this past Friday night when Lupe mentioned planning the menu. And I thought “why so early?” Until I realized that it’s two weeks away! So, time to get ready for the hustle and bustle of shopping, cooking, cleaning, baking, rinse and repeat. 

Aside from the regular hub bub and holiday cheer that this season brings this is also the time of year when people who have Type A personalities (Me) and are list makers and even those who aren’t make list after list after list. To do lists. Grocery list. Christmas wish list. Christmas  shopping list. Parties to attend list. Guest list. Priority List. Laundry list after list after list. There is just so much to do and get done. And there is never enough time.

Well, in light of all the good, the bad, the beautiful, bold and ugly that the past couple of years have brought me I have complied several lists to honor all the list making that will go on this season. Read, weep, rejoice and enjoy. And hopefully these lists can give you a moment of Zen in the mist of all the lists of things you think you have to get done. 

I'm the one in red and white..

Top 5 Things I Want to Get Done In Life:
1. Publish my memoir.
2. Have a baby/be someone's mother.
3. Love my husband so much he never has the desire to leave me.
4. See as much of the world as I can.
5. Laugh more. 

Top 5 Worst Medical Procedures/Moments:
1. Enduring a miscarriage- It's awful, terrible, gross, sad, painful and after all is said and done there is no funeral and you never feel any closure. Enough said. 
2. EMG- Electro-Magnetic something or other. This is when they stick you with needles that send electric shocks up your legs, arms and back to determine if you have muscle damage or spinal damage. You have to be in the room alone with the technician, you're naked, the bed is cold and it hurts like hell. 
3. MRI of Brain when you have an excruciating migraine- 2009 I endured something called "reversible cerebral vasoconstriction" (thunderclap headache) because it feels like someone hit you in the back of the head with a 2 by4. It made me break out in a cold sweat, projectile vomit and hate life. Now imagine feeling that while you're in a ginormous white machine that is making LOUD OBNOXIOUS buzzing sounds all around your head. (Yes, like the ones you see on House) 
4. Echo Cardiograms/EKGs- All I have to say is: more people have seen my boobs than I ever cared to. (Lupe is starting to get jealous.)
5. Barium Swallow- This is where you drink nasty, white, powdery chalk like crap so they can determine if your esophagus is damaged...thanks to "heartburn." I gagged about 5 times.

Top 5 Most Enlightening Experiences:
1. 5 Days in ICU- I can get depressed or I can get angry. If I get angry I can advocate for myself. When I advocate for myself I am in control. If I am in control I decide how and when this will end. And it is definitely NOT NOW.
2. Parent or Pregnancy- A few months after my miscarriage I decided that being a parent was more important than getting pregnant. If I am blessed to carry a child I will own that responsibility. If my body can't handle it, I will adopt. I want to be a mother and there is more than one way to do that.
3.Food is Medicine- Meeting with my cardiologist after my ICU stay. He did some funky Eastern medicine test on my body and told me to stop eating gluten, dairy and corn. I cried because it felt like the lights had finally been turned on. My immune system is in my gut, what I was eating was killing me. Time to stop killing myself. 
4. Comforting My Mom- She's always been the strong one. She's always there for everyone with a prayer, a plate of food and a hug. But one night, I was there for her. I was strong for the both of us and all was well. 
5. Every time my body does something I think it can't/won't- It's all those little victories most of us take for granted on an every day basis. For instance, this week while cooking, I realized that I can easily use a hand held can opener...2 years ago...I couldn't. It made me smile. Or when I walk up the stairs and I don't have to catch my breath...sometimes (no joke) I shed a little happy tear for myself because 2 months ago...I couldn't. 

One of my girls :)-Blanca & Me
Top 5 People in My Life:
1. God- and that's between me and Him. 
2. Me- because I'm fabulous.
3. Lupe- without him, I'm sure I'd be dead by now.
4. My Parents- without them I wouldn't have been born. :)
5. My Girls- and by that I mean ALL the strong, empowered, beautiful and inspiring women that keep me going everyday. (Friends and family) 

Top 5 Most Debilitating Symptoms:
1. Fatigue- not your average I don't want to get out of bed this morning fatigue, but more like I ran a marathon while battling pneumonia and then decided to meet with my personal trainer for strength training and now I think I'm dying fatigue. (Yes, this is what it feels like)
2.Heartburn- haha, I know it sounds silly especially when you see all those silly Tums/Nexium/Prilosec commercials. But this heartburn is not that. It's sleeping at a 90 degree angle your whole life because the acid creeps up if you lie flat. It's waking up 3 or 4 times a night hacking up fire burning acid that you feel in your ears. It's throwing up for 2 hours with no relief and having your husband rub your back afterwards cause everything hurts. It's not drinking water because even THAT burns going down. 
3. Raynaud's Phenomenon- This is the symptom that makes my hands turn blue/purple and tingle in the cold and under stress. I can literally do NOTHING when I have an attack. It hurts like hell and I am useless until it subsides. 
4. Joint Pain- And no, I don't mean like "oooh I think it's going to rain cause my knee hurts" pain. More like, can you get the cup off the shelf cause I can't raise my arms above my head. Or please bring me breakfast in bed because I'm not getting out of it today. Some days are easy and I feel nothing. Other days I'm an 80 year old woman.
5. Muscle Soreness/Tenderness- It's similar to what they describe in all those Fibromyalgia commericals...EXCEPT...I don't get to run around on the beach or paint a pretty picture after I pop a pill. Lol It still hurts to be touched on some days and I always feel like I spent hours at the gym lifting weights...sure wish my body LOOKED like I had. :) 

Top 5 Favorite Baked Goods:
1. Cheesecake- going to learn how to make a vegan, gluten-free version so I can still enjoy.
2. Crave's White Chocolate Macademia Nut Cupcake- I will allow myself this guilty pleasure once a year even if it causes indigestion and mucus. 
3. John Ufer's Pumpkin Bread- It is simply homemade goodness.
4. Upside Down Rum Cake- What's better than cake and alcohol?? 
5. Dominican Cake- I never get to eat this unless I'm in FL or NY but it is heavenly. And I can't even tell you what makes it "Dominican" but it just doesn't taste like regular cake. :)

Top 5 Reasons I’m An Artist:
1. To keep from going crazy.
2. Because I have stories to tell and I don't trust anyone else to tell them.
3. To keep from going crazy.
4. It's safer than drugs or alcohol.
5. To keep from going crazy. 

Top 5 Things Chronic Illness Has Taught Me:
1.There is no such thing as "normal."
2. I am and should always be the most important person in my life.
3. My pain is mine and mine alone.
4. None of this is my "fault." 
5. The people that matter are the ones that show they care. 

Top 5 Things I Wish I Could Say to People Who Don’t Understand:(You may get offended)
1. This is NOT cancer. There is NO cure and I don't care if your great Aunt beat cancer two times. I am in pain everyday. I am not a survivor I am an endurer. 
2. I don't look sick? Well, you don't look stupid..and we are. 
3. No, I don't need a full-time job to feel successful because I've already been published multiple times, have touched the lives of thousands of people with my poetry, and have a faemily who loves me. I could die tomorrow and be perfectly fine with it...could YOU? 
4. Don't feel sorry for me because I'm sick. Don't put me on a pedestal because I seem strong. I have good days and bad days. And deep down I am still kind of a bitch.
5. No, I'm not too young to be "this" sick. Diseases don't discriminate...and obviously neither does ignorance. 

Top 5 Happiest Moments/Experiences:
1. Finding out I was pregnant- even if it did end early, the possibility and thought of my body being able to do something THAT miraculous was awesome. 
This why I love him
2. My Wedding Day- I still think he's crazy for agreeing to be with my deteriorating self. 
3. My Proposal- I cried like a baby and it was awesome to see all my close family and friends there to support. 
4. Every time a submission gets accepted for publication- it's like giving birth without all the pain. I know that I am leaving a piece of myself behind...forever. 
5. Feb 2006 after a poetry reading- a young lady came up to me and said: "When I grow up I want to do that. I want to be like you. I want to do what you just did." If I had been hit by a truck that very night I would've been fine with it. I know I have done what I came here to do.

Sunday, November 4, 2012

What You See & What You Get

In NY, being silly..that took a lot out of me
"There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before."
Henry David Thoreau 

"How are you feeling?"

"Good. Well. I'm feeling better."

"Well, you look great!"

And I chuckle. Because I truly do wish that my rosy cheeks, cute hair and fashionable clothes were a true measure of how I am "doing." But the truth is, when you live with an "invisible illness" what you see is not often what you get. What YOU see is a healthy 28 year old female, out with her friends on a friday night forcing a smile and a laugh to try and forget the fact that she forgot to take her blood pressure and if the heart palpitations she's feeling right now mean anything this time. What YOU see is someone who has "recovered" well from her brief stint in the ICU. What YOU see is someone who isn't as sick as she claims to be.

I have friends in the chronic illness/invisible illness/auto-immune disease community that often complain about people telling them that they "don't look sick." There are many websites, blogs, and community boards dedicated just to this idea. But I've actually never heard anyone tell ME that. I get something just as bad: "you look great/you look good." Followed by the awkward laugh or the nervous smile because they genuinely believe they're giving me a compliment. And yet, on the inside I cringe and have learned to smile politely, grit my teeth, and respond honestly: "Thank you, but it's not easy."

I know these words are said with kindness and they are "meant" to be a compliment. But what the non-sick person doesn't get is that with those words you belittle my experience. You negate the pain and the fatigue that I feel on a daily basis. You insinuate with those words that because I "look" healthy I must be fine. And yet, if I were to tell YOU after a heart break that you looked "great," I doubt you would find those words comforting or helpful.  I make the comparison because heart break cannot be seen, only felt, and invisible illnesses are the same.

Over the past week I have been a real social butterfly. I've been dancing, drinking, out to dinners and lunches, poetry readings, the movies and the mall. By all appearances I am "back to normal." I have been asked over half a dozen times how I'm feeling. How's my health? And every time I honestly reply that I am "better." Because by comparison, I am in a better place than I was two months ago. However it is not without its struggles, challenges and work. I work very, very hard to "be better." And I often debate whether or not I should work hard to "look" better or if I should let my illness show.

Should I wear makeup today or not?
Should I take on the challenge of wearing heels or will flats have to do?
Should I flat iron my hair and be tired for two hours or just wash and wear?

I may not have a job and many of you still don't know what it is that I'm "doing" right now. But these questions, these every day processes ARE a full time job. (What to wear because my hands can't grip buttons or zippers today/What to eat because my heartburn is acting up and it burns to drink a glass of water/What to do with my hair because I can't raise my arms above my head for longer than 15sec/What to do to keep from going stir crazy in the house because I'm too dizzy to drive anywhere and I have to avoid sun exposure for fear of developing skin cancer....and on and on)
Cat Scan of brain on honeymoon

The average person takes for granted how easy it is for them to get up in the morning. I debate whether or not to put on makeup because I fear looking "too good" and then everyone will think my illness is a sham. But I also have to remind myself that it's not about them and their opinions. It's about me and I feel good when I wear makeup. Even it does take me twice as long to get ready. I too, despite my illness, want to feel pretty even if everything inside of me doesn't.

The reason I "look good" is because I'm heavily medicated (which comes with its own set of challenges on top of what my disease is already doing to me). And I just spent the only energy I had for the day getting ready to show up and look "this good." So please don't mind me if I don't get up to hug you hello or goodbye. Please don't mind if I just sit here in this booth/chair and smile and laugh because it is all I CAN do.

Staying at home and taking care of me is not as exotic or enticing as people think it is. Please, don't be envious. I'd much rather have the energy and the enthusiasm to get up every day and actually use my degree. I'd much rather put on makeup out of vanity and not necessity. I'd much rather look good AND feel good too. I'd much rather bake, meditate, craft, cook, clean and write only because it's fun and not because it gives me something to do other than worry about relapsing or praying for remission.

I am getting better and I am getting stronger each and every day. I am at a healthier weight than I have ever been. I have a better attitude about life and the future. I see things more clearly and I have a stronger spiritual relationship and connection with God than ever before. This illness and these flares have awakened a newer/better me. And for that, I am thankful. I am forever grateful that I am not a "normal" 28 year old shallow and misguided female. I am glad Scleroderma slapped me in the face and told me to wake the hell up and follow my dreams already. I can't say that I would change that for anything. But I know what it has taken me to get to this place and I need those who want to be a part of my life to know it as well.

And while I appreciate the well-intentioned remarks I ask for one thing in return. Don't ask how I'm doing (with the subtext of bringing up my health) if you're not willing to hear the truth: "I'm better, but it takes a lot of work and it hasn't been easy." And trust me, I'll know you aren't willing to hear the truth because you will get awkward and you will change the topic. And the truth is, I will let you. But the next time you ask, what YOU will get is a fake smile and a lie, because you're simply not ready for anything more.

Monday, October 29, 2012

One Year Ago...

“Dance, when you're broken open. Dance, if you've torn the bandage off. Dance in the middle of the fighting. Dance in your blood. Dance when you're perfectly free.” 

One year ago today I was off all of my meds 
One year ago today I was ready to start a family 
One year ago today I had much longer hair 
One year ago today I was working full-time
One year ago today I would not have guessed that I'd be where I'm at today

This past Saturday night I celebrated my birthday. I celebrated it with a great group of close friends and family. We ate delicious food, drank a few drinks and danced the night away. It was the perfect evening to round out a not so perfect year. And yet, as I sat in the restaurant before anyone else arrived I had a few minutes to reflect on my 27th year of life, and I realized that I actually didn't want it to end. I realized that I was going to miss being 27 and I wasn't sure if I was ready for 28.

You see, despite it's challenges, I feel that this past year I finally came into my "womanhood." I always felt like a girl before. Depending on others for my life choices. Trying to live up to my mother's and father's expectations of me. Trying to be the "perfect" wife for society to see. Wanting and needing the approval of those in "authority."  But at some point this year, something within me clicked and the transition began. I started to leave that scared naive little girl behind and I began to embrace the strong, powerful, loving and unique woman that waited in the wings.

Perhaps it was the prospect of becoming a mother that made me feel "all grown up." Perhaps it was the loss of that prospect that made me realize I had to deal with my own problems and no one else was going to "fix" them for me. Perhaps it was the numerous ER visits or the feelings of helplessness that ensued after each visit. Perhaps it was the anger that I felt at losing all control over my own body. Perhaps it was simply just time. Whatever and whenever it was, this past year I finally said "yes" to the woman that I needed to become and on Saturday night I let her "dance to keep from crying/dance to keep from dying." -(Ntozake Shange) It was therapeutic, it was fun, it was what I needed.

Below is an excerpt from my memoir (a very long work in progress) about the importance of music and dance and how it's shaped me and helped me on this life journey. Enjoy.

And those who were seen dancing were thought to be insane by those who could not hear the music.


            I like to dance Salsa, merengue, bachata, hip-hop, pop, anything really.  I like it when my hips sway. My legs and feet often stumble to the beat, but I feel the rhythm, the soul and the passion of the music.  I can twirl and shake for hours. Whether I’m cleaning the house, at a club, or drunk or sober, I like to dance.  All I need is to feel the bass, the guitar, and the drums. The drums that beat like a schoolgirl in love.

            Since I was a little girl, and Mami would play Juan Luis, Julio Iglesias or La India on our record player and clean I knew music meant something to my family, my culture and mi gente.   The soulful rhythms, reminiscent of a simpler life back in the DR are what kept my mother sane most days.  Without mournful voices and synchronized tambourines, I’m sure my mother would have packed a bag and left a note like so many other desperate housewives of her time did.  But deep inside she knew she had to let Jerry Rivera and Los Hermanos Rosario keep her heart alive and her spirit free. 

            Unfortunately for me, however, her strong beating heart meant that I would be awakened every Saturday morning by a humming vacuum, a güira, a guitar and some Caribbean man’s achy voice complaining about a maldita mujer that left him for another man.  All this racket would eventually be followed by Mami screaming, “¡Levántate de ahí ya!”
To which I would regretfully reply, “But why?!” 
And carefully but deliberately she’d come to my bed, snatch off the covers, leaving me cold and afraid and say, “Porque yo dije, because I said so.” I would then oblige, get up, and commence the weekly rituals of dusting and scrubbing, as a scratchy merengue rocked the house and my mother back and forth.
            The cleaning, singing and missed step dancing became a ritual in our house that lasted more than 10 years. It vibrated through our walls and under our feet. It made us laugh. It made us angry. It was a silent prayer, a requiem for diminished dreams and an uncertain future. Amidst my mother’s nagging and my rebellion, it was the only way we knew how to make peace.
I knew then, as I know now that music is essential to the well being of my family and my culture, that dancing is not only crucial but necessary for our survival and that both define who we are as a people and a race.  Sometimes, it feels that Scleroderma has taken that away from me.
            Sure, my hips still sway from side to side and yes, I still feel the drums pulsating through my veins, but I cannot dance like I used to with my husband anymore. And for me that is the greatest tragedy of all.  Our first kiss happened while we danced.  We made love on and to the dance floor before ever taking off our clothes, and when we finally did, there was a soft bachata playing in the background. 
            All these things I remember when I catch my breath and grab my aching thigh as the salsa has just barely begun and I’m already headed back to my seat.  But my husband just smiles, places his hands on my stubborn hips, guides me back, takes a drink and asks: “Are you okay, baby?”
And I lie and say: “Yes.” Because physically I know I’ll be fine, but as a Dominicana I feel like I have lost something.  I feel that I have had to abandon a part of me that doesn’t want to be left by the side of the road. The part that connects me to a place and a people I will never quite fully understand or be a part of. 
I am now stuck floating between three worlds, three “cultures,” three distinct selves that require attention: my American self, my Dominican self and my chronically ill self. I play tug of war on a daily basis and I never know who is going to win. Will I have the strength to sweep the floor and salsa side to side today? Will I decide instead to write Haikus and listen to Jewel? Or will Scleroderma win and keep me in bed all day, tired, confused and heavily medicated? I can never accurately predict which self will be expressed and embraced on a day to day basis but I accept and believe that even if my illness or work or life get too crazy I, like my mother always did, still can and should find the time, the energy and the spirit to hear the music and dance.

Sunday, October 21, 2012

Communicate & Compromise: Keep Your Relationships Strong

God grant me the serenity to accept the people I cannot change

Courage to change the one I can,

And wisdom to know it’s me.
I wouldn't change him for the world.. :)

Every morning when I wake up I do 3 things: 1. I meditate for 15/20min sitting up in bed/2. I pray and give thanks for everyone and everything./3. I stand up, stretch, say the serenity prayer and walk the dog. 

I began saying the Serenity prayer two years ago in 2010 shortly after another flare, the FIRST time I quit one of my full-time jobs. And actually that was the same year I started this blog. (Are you beginning to see a pattern?) 
Now I can't honestly remember when I heard or learned the serenity prayer, but for some reason it stuck with me and it's helped get me through some of the most difficult times. 
For those who don't know it (no it's not the quote at the top): (Short version)
"God grant me the serenity to accept the things I cannot change
The courage to change the things I can
And the wisdom to know the difference"
Most people know this as the"Alcoholics Anonymous" prayer...and I'll be honest, I don't really know why. Aside from the fact that they start every meeting this way. (Or so I've been told.) But I find that when you live with a chronic illness, this prayer can get you and keep you from hell and back again if you decide to truly live by it. 
I cannot change the fact that I am sick. But I can change what I eat. 

I cannot change that this is forever. But I can change how I react to my flare ups.

I cannot change how people react to my illness. But I can change their understanding of it and of who I am now because of it.
The wisdom I have gained about the last CAN and CANNOT is what I want to blog about today. I believe that whether you are sick or healthy, it is wisdom that everyone can use.
It is what it is...

Relationships are hard. For everyone. Building a relationship, keeping a relationship, rebuilding it etc. And I don't just mean romantic relationships. Friendships, family ties, etc. etc. etc. and on and on the list goes. They are hard because life happens. They are hard because people change and grow apart. They are hard because sometimes we want them to change and they don't. They are hard because we don't give them the time, love, attention and nurture that they deserve (the person or the relationship itself).  
Whatever the reason, if you want to keep a relationship strong or you want to rebuild an existing one, the two most valuable lessons I've learned in my short life is that they cannot function properly without COMMUNICATION and COMPROMISE. 
Each person must be willing to communicate his/her wants, needs, desires and feelings AND each individual must be willing to give a little in order to get a little. Or sometimes, (as can be the case when you're chronically ill or live with chronic pain) give a little and be amazed at how much you actually get back in return. 
When I was first diagnosed, it was difficult for me to accept my limitations. I pushed myself too hard and then paid the price afterwards with 3 days in bed and unbearable pain. I refused to ask for help and I didn't talk about how I was feeling physically or emotionally. I bottled up my pain and insisted on living a "normal" life. In return, I was making me and everyone else around me absolutely miserable. 
When I finally broke down, and realized that I WASN'T indeed Wonder Woman and that I actually did have a wonderful support system that was willing and ready and wanting to help me, a whole new world  opened up for me. 
I began communicating with my husband, friends and family about what I could and couldn't do physically and sometimes even mentally or emotionally. I said things like "No, I can't wash the pots and pans. Can you help me?" or "If I go out to lunch with you I won't be able to go to the movies because I will need to go home and rest." Instead of cancelling plans or hurting people's feelings we had more game nights and BBQ's at our place. I communicated clearly what I needed and in return they actually compromised and were able to not only give me what I needed to survive and function but they also gave me their time and love so we could keep our relationships strong. 
I also learned to listen to my body and what it was communicating to me and I learned how to compromise with myself. Instead of trying to take on the world, I tackled one thing at a time and ALLOWED myself to be ok with accomplishing small goals vs. large insurmountable ones. I no longer beat myself up if I wash the laundry but don't fold it. Or if I have to take a break from sitting at my desk after only 1 hr. I realize it's going to be fine because this is what I need- guilt free.
Family and friends can be surprisingly understanding if you help them understand by communicating. Sure, my illness is "invisible," and many people are thinking "she looks fine." I can't change what they are thinking, but by talking about what's really going on inside of me I can help them better understand that no, I'm not "fine" and what I need is different from what everyone else needs. And that if they are willing to meet me where I'M at, then our relationship can be as strong or even stronger than before. 
I am not who I was before. I have accepted that. Some people in my life have as well. Others have reacted and are still in denial. Some are angry. Some are confused. Some have simply disappeared. I cannot change my fate or my condition. I cannot change how THEY react to it. But what I CAN do is shed light and share the wisdom I have gained about living with these illnesses firsthand. I CAN change how much they understand about what is happening to me. I CAN change my responsibilities in the relationship so there is a sense of balance. 
I know that the rest is up to them. What THEY choose to do with what I give them is something that I have no control over. And in the end, that actually brings me a greater sense of peace than anything else. In the end, I know that I have done what I can to keep the relationship strong and that's all I need. I can actually let go and let God. Let go, and let "them." 
To this day, I can honestly say, that each relationship/friendship etc. that I have approached with this idea of communicate and compromise has survived and even been strengthened overall. There have been struggles, matches of tug of war, misunderstandings, miscommunications and fits of crying, yelling, cancelled plans, undone chores and lonely nights with a glass of wine and cupcakes. And yes, there were some relationships where I chose not to communicate and/or compromise as needed and those relationships have suffered or have been severed. Do I miss them? Yes. Is it for the best? Probably so, but either way I have learned to just let go.

Each relationship is its own beautiful monster that just needs to be held at night and given love. It is not easy. It is even more difficult when you are ill. But in those dark times, on those soul-searching nights, if you have even just one person, one relationship that you can count on to bring youout of the shadows and into the dawn, it is always worth it. 
Tips/ideas for compromising and maintaining healthy relationships:

1. In marriage/romantic relationship/partner- 
Give a little get a lot in return

  •         Do half the dishes and leave the heavy ones for spouse.
  •         Share the kitchen- one chops veggies the other makes the rice or cooks veggies
  •         Schedule specific chores for ONLY those days and stick to it! (Sunday Laundry day, Monday bathroom 1, Sweep on Wednesdays, Dishes every other day)
  •         Have those “ain’t never gonna do them” chores, for me it’s mopping, I only mop if something spills, looks brown or I’m having people lots of ppl.  Mopping hurts my back, my hands, my shoulders and my sanity. If it bothers spouse so much, they’ll do it!
Social Activities:
Salsa Dancing...
  •         If we go out to a “fun place” today we rest or do something “boring” tomorrow.
  •        Or if we’re gonna have “fun” you have to serve me lol or not force me to move or talk to people.
  •         Hubby wants to go to a sporting event? Let him go with a friend but force him to take pictures and send them to you

      • OR Tell him you’d rather host a BBQ with a few friends to watch it at home and allow yourself to go to bed when you’re tired without feeling guilty!  His friends and mine know that when I’m tired, I’m tired and I’m gonna go to sleep…especially if I’m at my own house!
With yourself:

Allow yourself not to be perfect
Your face...your face
  • Washed the laundry? Throw yourself a party, don’t feel disappointed cause you didn’t put it away. 

  • Tell yourself what you will and won’t do for the day and be truly ok with it.

  • Today I will load the dishwasher and sweep'

  • Today I will not mop, because I can do that tomorrow since no one is coming over and the floors aren’t sticky. 
  • When you’ve done what you said you would- rest, take a bath, read a good book celebrate the success with your spouse. 
Friends & Family:
They want to see you, you want to see them.
New Year's w/Friends
  • Invite them over and have a pot luck. You provide salad and drinks(something you don’t have to work to make!) Insta girls’ night!
  • House not up to visitors? See if one of your close girlfriends can pick you up and host it at her place. Again, take a salad! Curl up on couches and chat the night away. 

Get a really close friend/your mom/sister/daughter

  • If you’re up for it go to the Dollar Store and buy some cheap funky nail color.
  • Go home and give each other mani/pedis
  • Massage hands/feet whatever you’re comfortable with and talk and hang out
  • Can’t paint your nails?- Bake or cook something together. You can sit and chop, cut or mix
  • ingredients and she can stand and do the heavy lifting…you’re still bonding!
  • Too tired to move! Find a favorite short story online or in a book and read them to each other on the
  • couch. They can be funny, serious whatever!

Essentially DON’T compromise your health for those who aren't willing to compromise for the relationship. Balance is hard but not impossible and it takes time to master so allow yourself to be patient while you figure out what works for each of you! Truth is if you tell people what you need so they can still be an integral part of your life, those who love you WILL give you what you need. And they may not even realize how much they’re giving!