Myocardium Madness

I can hear it again, my heart beat vibrating into my right eardrum…

As crazy as that sounds, it’s also worrying…

These thumps so vivid that only numbing lyrics can temporarily snuff out the pulsating sound…

I’ve been in this place once upon a time ago, I just hope the results aren’t the same…

Only during the ambient hours of midnight black does this beating heart travel up into my ear, it silences itself during awaken hours of sunrays…

No pain is stabbing my chest or head, so I’m good. No numbness running up my left arm, so I’m good. No dizziness or shortness of breath, so I’m good. These bones are titanium strong, so I’m good. This body and all of it’s interworkings are so healthy that it’s sickening 😉 so I’m good.

So, why this again? What’s the meaning…?

My eyes keep searching for an answer as to why this ticker is beating so loudly, this morse coded message it’s trying to send, but the popcorn ceiling isn’t revealing anything…

You will never be able to escape from your heart, so it is better to listen to what it has to say… -Paulo Coelho

24 Hours

Once in a while you wake up and realize that your only obligation to society, to the world is to pause your life and stay in. The only task invisibly written in your planner is to take care of you.

Do whatever it is that’s going to allow you to clear your mind…to breathe.

Today was that day for myself. Last night was rough…the current events in my life has placed my mind racing at 180 mph, sleep downgraded from a few hours to zero hours and my stomach was in knots.

Stress is as much a monster as Anxiety.

Today my phone was silenced and only check a couple of times just in case…today I made comfort food, enjoyed every bite…today I sipped on an iced coffee, sweet liquid caramel crack 😉.

Today I indulged in a few episodes of Gilmore Girls while jotting down a few thoughts and next moves…today I took care of me.

Sometimes you need to just pause life…24 hrs for you.

3 Days, 3 Quotes: Day 1

I love a good quote, be it lyrical or spoken. I came across this challenge over on The Perks of Being Different blog, loved the theme so I decided to join this trend. I’m not usually a trend follower, but once in a while it’s fun to hop on board.

Today’s quote has been a favorite of mine for a long time, ever since my eyes soaked it in and my heart melted. It is a pretty infamous one…

Out of all the quotes residing within the world of love, this is the most elegant, pure, honest and romantic. In my opinion of course.

What is your favorite love quote?

Until tomorrow… ❤

If Only….

Love…a four lettered heart attack that causes beautiful chaos to all of the senses.

As a teen, I had this vision of a fairytale kind of love embedded in my heart. That vision was a small component that kept what little speck of hope I was holding onto during those awkward high school years. Being the freak around school campus tends to slowly gnaw away on your self-confidence, so any glow of contentment was captured and placed in my mental jar for safe keeping. My vision of love was that “Jack and Sally” kind of love… makes sense seeing as my favorite film since I was 9 years old is “The Nightmare Before Christmas”. I know most searching hearts are wanting that Romeo and Juliet love, but our brains tend to leave out exactly how that romance ended. Jack and Sally, they’re eternal.

I was one who entered the dating world later in life which was probably a positive aspect. My mind wasn’t always in a luminous place and anytime my mind goes dark I tend to submit space between myself and my family and friends. Being a guarded human is definitely interesting; never a dull moment.

I’ll admit that when I did start dating, I for whatever reason ended up with a guy that wasn’t good for me at all. The first month together was great, then a shift would occur to where I was his doormat. I now became the girlfriend that was expected to kiss the ground he walked on because someone like him was dating someone like me. For far too long I kept repeating history with every relationship (if that’s what I can even call them).

I know that I’m not the breathtakingly beautiful girl in the room, but I am an intelligently adorable human who deserves to be treated right, just as we all do. This wasn’t a fact I knew back then, though a part of me wishes I did, but then I wouldn’t have learned the lessons needed from those unhealthy days.

I paused the whole “looking for love” road trip for quite some time. Mentally unsteady isn’t a phase one should be in when wanting love in their life.

i needed time

…time to remember the promise I made to the girl I buried
…time to find the bonfire pit in my soul and light it up.
…time to solve my own Rubik’s cube before allowing a new variable into my life.

I also needed to figure out what I wanted in a relationship. Nothing in life has a level of perfection and having great expectations usually just leads you to frustration, but wanting a few solid features and a concrete relationship isn’t asking for too much.

After a much-needed reprieve, that moment came when I thought that I had found my “Jack”. He was handsome with that southern charm, a smile that made your breath pause and blue eyes that could softly kill. My attempt to keep the two of us at the friendship level didn’t last very long; before I knew it I was completely lost in his kiss. Everything seemed to run smoothly. He said all of the romantic comments a girl wants to hear and acted like Prince Charming. Me being me, my walls never went completely down when I was in his arms, I simply convinced myself that it was due to my trust issues, that this was my own problem. Ignorance is not blissful at all, turns out that this was a code black warning that I was ignoring because of my own flaws.

“I can’t find me anymore…” -All Time Low

Relationships do not consist of manipulation, deception, verbal abuse or violent tempers. The lies rapidly surfaced and the other woman was found hiding behind the internet curtain. Initial instinct went into full force, time to end the downward spiraling toxicity. I knew he wasn’t going to leave easily, but I wasn’t prepared to be pinned up against the wall with his hand gripped around my neck as the words, “forget what you found out and be grateful that someone like me is even with someone like you.”

For a nanosecond, I told myself that what he was saying was true, that I wasn’t good enough for any other type of relationship, then my inner self-slapped a shit load of sense into my mind as I turned the tables on him with a dose of blackmail. See, while he may have had the “strength” card, I held the “intelligent” card. I knew I was going to need rock solid leverage when getting ready to break up with him.

“abandoned love songs smashed across the hardwood floor, I read the sadness on your face….” -Blink 182

Even though he stalked me for the next few months after the aftermath, I never caved. I’d rather live a singular life than be trapped in a toxic one where two was truly lonelier than one. I had never cried so much in my entire life than while in that relationship. Even though I had found a deeply hidden strength I never knew I had, my Ma’ was my rock during that time and her wisdom is what kept my faith in myself beating.

It has been almost seven years since that chaos went down and while I have casually dated here and there, nothing serious yet. I have purposely kept the casual status because I’m scared of lightning striking twice. However, these days my heart is tired of the detachment, I can feel the empty space in my heart beating extra loudly.

perhaps it is time to reunite myself and love again

Bring down a wall. Take a chance. The whole “cute house with a picket fence” was something I had wanted since I was 10 years old. I know that seems crazy, you’re probably thinking that that’s too young to even know what love is. Well, when you’re sitting next to your Dad, across from your Mom as she’s laying in her hospital bed, holding your baby sister, a sense of wanting that love, that family someday is very intoxicating. As I grew older that intoxication morphed into a dream.

Even though I don’t yet know what real love is, I definitely know what love isn’t…

“I want you forever even when we’re not together, scars on my body so I can take you wherever…” -MGK

Drowning Beautifully

You entered my dreams last night, a very unwelcome visitor is what you portrayed. My family, friends and kind strangers haven’t been a component of my twisted dreams for a few months now and that’s how I intend to keep it. But, last night…there you were in all of your manipulating charm. Those deceiving eyes matching that damned grin on your smug face. First subconscious glimpse of you brought a tight knot in the center of my gut while every bolt reinforced throughout my walls.

Alone, sitting in the center of my woods…a perfectly gloomy fog hovered over a slightly frozen breeze. Under my favorite tree I sat, notebook and pen in hand, headphones vibrating Home by Eminem and hood covering my spinning head as a subtly mysterious mist swirled through these childhood woods. Once a place I feared now feels more like home than reality.

In a bubble of contentment I sat, black scribbles spilling out on those blue lines, Crashed inspiration lighting every bulb in this mechanical mind of mine. This dream was the best I had had in a very long time. No monsters from under my bed…no blue plasma dripping out from past scars…no looped inception or golden hearts to guard. Just me, my scars and therapeutic lyrics. That was until you…..

Every time I feel as though every piece of me is exempt from every piece of you an unwanted memory seeps into my world. A message here, a message there….all I want is you to permanently vanish. Hell, as bad as this sounds, I wish you’d just find another woman to ruin. It has been seven years come May since I escaped your toxic grip, a place I’ll never return to.

I do not yet know why you entered my subliminal world, but you best leave. This warning isn’t to allow you a chance to find safety, this is me not wanting to transform into that past unfamiliar shape I was when I was in your company. My woods have been calm chaos, do not cause a shift in my contentment. Please leave and take this knot in my stomach and toxic blood in my veins with you.

It has been some time since I’ve woken in a shaken cold sweat.

This is my world…You’re no longer welcome.

“I’m dying to breathe and all you do is strangle me…” _Eminem ft. Skylar Grey


Challenge Accepted 

So with the new year in full force mode I have decided to make a few goals, personal and career. While we begin 2018 with a fresh blank page. I still want to keep up on exercises that improve and maintain my writing skills. On Pinterest I found a 30 day writing challenge. Some blogs will be posted here on WordPress and others will be posted on my Society Rebel page. The topics listed for this challenge seem very positive. Which I was drawn to. My writing style lately has been more or less on the dim side, I figured that this tiny side journey might brighten things up.

First challenge is to list 10 things that make you happy…

– First and foremost, my family is my everything. These golden hearted humans keep my contentment in tact. Like Dom, I ain’t got friends..I’ve got family.

– A pen and notebook…These two vessels allow me an actual voice amongst a world of white static. My lips may not always obtain the capability of conveying the thoughts thundering in my head, but my jet black inked pen never fails.

– Music…there are moments where this ticking ticker of mine need those therapeutic drum beats to calm it’s scars. There are moments where my mechanical mind need those quickly spun lyrics to aid in silencing my screaming thoughts. Lastly, there are those moments where a combo deal is all i need to soothe my questioning soul.

– Coffee…I know what you’re thinking, but don’t assume. A delicious cup of latte goodness lowers the speed of my spinning mind so that I may focus on whatever task is on my laptop. Caffeine reverses my anxiety, relaxes my insomnia.

-Beach…I could spit out an entire piece about how sand, ocean and a bonfire sunset temporarily makes my whole being feel belonged…oh wait, I did. Santa Monica.

-Thunderstorms and Rain…I am one of those odd humans that indulges in a perfectly gloomy day. 

-Books…a way of escaping my world and transporting into someone else’s. 

-Unknown…the fuzzy dreams and the blurred image of a future love ignites a comforting feeling.

-Freshness…This may sound crazy, but I love fresh sheets on my bed, fresh towels hanging up in my bathroom and fresh blankets to snuggle up with.

-Puppies…pretty self explanatory. 

I hope you all had a wonderful holiday season and that 2018 opens many dream filled opportunities for you. 

Love always, D

I’m only Human

Well hello there world, it has been some time since you and I have sat and chatted. Today I have one purpose and one purpose only, to lick all the sugar off of these coated theories and misconceptions.  This is a message for all of you humans residing on this planet and to all you professionals who believe that you know better than us. So, grab yourself a refreshing beverage and get ready because I’m going to steal a few of your precious moments and make you pay attention, eyes wide open.

Humans…when you look at me, from first unknowledgeable glance, what do you see? My hypothesis is that all you see is a walking “Disability”. You may not know what it is I exactly have, but that doesn’t matter, right.? Your deduction is acceptable, I mean between the scars on my arms from surgeries and these two fists that have been interchanged for hands, I too would assume the same as you. Please don’t search for any offensive tiny print in what I’m about to say…You’re Dead Wrong!

Never assume without solid proof. If you must assume, then I dare you to swap shoes with me and I’m not talking for just a mile. While one can learn a lot from a mile, we’ll need 30 days for you to be able to get a mere taste of how my life spins and who I am. This journey I’ve been given is one hell of ride, no doubt about it, but you need to be prepared. I hope you have thick skin and steel balls sweetie because you’re going to need ’em. Be prepared to decipher whether comments are kind questions that should be engaged into or ignorant bullshit that calls to simply be ignored. Be prepared to be stared at…ALL OF THE TIME. Are there shitty days, days were you just don’t want to do the whole “adulting”? Oh sweetie, you have no idea, but it doesn’t matter how treacherous the storm may be, this world spins on its axis’s and your life needs to be lived. Repeat after me…Concealer, Caffeine, Hoodie, Headphones, Deep breath and out the door you go. You can cry or scream, whatever your preference, after the days over. I hope your well of patience is bottomless and that you have a hunger for creating solutions because you’re going to need those skills as well. Like Thomas Edison and his brilliant light bulb, there will be times were it will take you 2,000 times before you conquer a challenge. Lastly, yet not lastly, there will be moments when you’ll find yourself lost amongst the invisible markings that others have burned onto your body. Their labels will try to drown you within your own cerebral storm, but don’t let them. You’re going to have to fight those mental storms and trust me when I say that they are much strong than any physical storm that may hit. Those mental waves are larger in size and have a higher crash impact. You’ll be pulled under into deeper depths causing you to have to swim harder to grab a breath of fresh air. When those storms slam in remember this, you are NOT a victim of your circumstances. You’re only a victim if you allow yourself to be one.

So, shall we swap shoes? I hope you like wearing Converse, Vans and boots.

Take a look in the mirror, And what do you see, Do you see it clearer, Or are you deceived, In what you believe…. -Rag n Bone Man

Okay, your turn Professionals! I have a few comments for a few of your so called “statistics”. I’ve never said anything before because I didn’t want to offend anyone, but I’ve held this all in for too long and like the Hulk I’m ready to Smash! First statistic: Our skin is so fragile that we cant be hugged. Hugs hurt. What!? Are you serious! Do you realize that anyone who doesn’t know what EB is and reads this will automatically assume that we’re these bubble kids that no one can go near. Furthermore, EB has varying types and subtypes. You cant just slap a generalized statistic like that on all of us. Newsflash, I have DEB and guess what, I come from a family who is so hug happy is not even funny. My parents, siblings, relatives, friends and I are always giving out hugs. I used to roughhouse with my Dad when I was a kid. Water gun fights, amusement parks and whatever other adventures with my siblings. Yes I would gets bumps and bruises, wrap them up and move on, that’s how it goes. I understand that not everyone’s situation is the same. Do you though? PS, Sex doesn’t hurt and y’all know what’s involved with that. 😉

Second statistic: Most of those born with EB won’t live past the age of fourteen. Again, not everyone born with EB is born into the same situation. These generalized labels you continually slap on us is so misleading that it makes my stomach turn inside out. I was one of the first babies born with EB to be apart of a trail group. This was a time when EB wasn’t known about. After two weeks of the doctors running their tests, their conclusions were that my life span wouldn’t progress past the age of fourteen and that my brain thought process wouldn’t progress past that of a toddler. The doctors wanted my mom to have me institutionalized. All of their findings were concluded on very little knowledge.

Derra Nicole Sabo: Born Nov. 2nd, 1984 – Died: No date found, I guess she’s still kicking. PS, IQ is a touch higher than a three year old’s 😉

You can’t scare the shit out of these parents with your generalized statistics. Whether you’re born with EB or some other disability, kids deserve to be kids. I know that so many aren’t out there causing chaos in the world, that they are stuck in hospital beds and hooked to machines and that breaks my heart. I was once that kid who spent her school breaks in hospitals, having surgeries.  But, one’s situation doesn’t mean the rest of us are cloned in that same manner.

EB is horrible, no argument here. Life is hard, again no argument. But, guess what? Any disability is horrible, they all suck. Whether your disability is physical, mental or emotional, we ALL have something that we’re dealing with. And life, life is just hard period. There is always someone who has it worse than you do though.  The storms make you appreciate the sunrays.

To those of you with EB pleases remember this, EB is a compartment of what makes up your life. EB isn’t your entire life. EB is NOT who you are. You are who you are and in the end, you have a right to live an amazing life. You have a choice.

with every ounce of my blood, with every breath in my lungs, won’t stop ’til I’m Phenomenal… -Eminem

Some may say that I have no right to go against the professionals. Some may say that I don’t appreciate all of the work and research being done by them. You too are wrong. I appreciate all of the countless hours being spent researching towards a cure and I whole heartedly hope that one day a cure is found. I also appreciate all of the doctors/ nurses who care for their patients. I have had and have some incredible doctors who have stitched me up after a battle with life. I am just saying that you can’t say we’re all the same. I am saying enough already with these generalized labels. And I believe that 32 years experience of living with EB entitles me to speak my mind. If you feel offended by that well then I am sorry. But, I am only human.

PS. the only labels I allow on my body are my tattoos.

We are all warriors… We are beautiful… We are all bold… We are all badass… and we are all in this together.

Enough with the labels… Enough with being outsiders… Enough with these damn pedestals y’all keep putting yourselves on.

We are humans living our lives on this great big earth. Be kind, be understanding, be compassionate. Everyone’s journey has storms.

Pain…oh let the bullets fly, oh let them rain…my life, my love, my drive they came from pain… -Imagine Dragons