Getting to know the new me…

Sometimes it’s the journey that teaches you a lot about your destination.

I have searched for the eject button on the recent path of my journey, to no avail. In the years since my diagnosis I have done what I always do, plow through, head held high, never looking back. As of late that methodology has not been as comforting. Life’s lemons are still sitting on my porch waiting to be made into it’s potent beverage. I have stared at them not quite understanding what to do with them, as my normal kick ass, straight forward approach has had me coming up drained and in the same place. Stagnant and drained are pretty substantial words to describe my current state of being. I have pondered and scoured for an answer to the “why” and it wasn’t until several days ago that I found the answer.

Let me be clear, my friendship with my chronic illnesses is nothing new. We are several years in and I thought that I had gotten a nice hold on them. What I wasn’t ready to admit to myself or the world around me was that, I no longer knew who I saw in the mirror. She looked familiar, she sounded familiar, but all in all not the same person. Really, it should have come as no surprise to me but it surly was. As I was in my beautiful world of deep cleaning and ridiculously loud music this week, the answer to the why was so very clear.

I no longer knew myself.

For someone that knew who she was and where she was going in life at a ridiculously young age this was a catastrophic blow. It all made sense though. The feeling of being lost and alone even when I was surrounded by the people that loved me most. The feeling of unease and uncertainty when I had the best support system someone could ask for. It all made perfect sense. When all you know is this semblance of a person that handles life with a vigorous fire that can never be snuffed, then you find yourself confused and depleted from life’s lemonade, you can’t help but feel shaken down. Right now, in my life I am getting a shake down. One day I woke up and I was in another body that had unimaginable pains, unclear thoughts from what could only be described as a foggy state, and a back bone that no longer stood straight. Who was this person? How did this happen?

Getting diagnosed wasn’t the hard part, reacquainting myself… well, with myself has been the most excruciating experience. Trying to do this while living life on life’s terms, well now your asking for too much. Having to work, be a wife, a daughter, and fuck it a productive member of society… All the while trying to understand what happened to you… Now that’s a damn epic mission. Nevertheless, I realized it and all of the missing pieces came together. I hadn’t realized that it was going to be a grieving process or even a process period. The vibrant woman was now a slower moving version of who she used to be. A more jaded and fatigued version of who she used to be. The woman that looks back at me in the mirror is tired, depleted, and honestly a little angry… Not the old me that was the fire spitting free spirit with endless energy. Can I place all of the blame on chronic illnesses? Well sure I can but that’s not who I am. I take responsibility for my actions and my part in the situation. I could have done more about my illnesses. I could have done some more soul searching. In the end, I won’t look back at what I could have done, to me thats a waste of perfectly good brain cells that I should preserve for days that the brain fog sets in.

So where do I go from here I asked myself. Well to the beach of course! So I find myself at the beach, searching for answers to questions I thought I already had the answers to. I am searching for answers and way to steer this new way of life for me. To figure out how to still be that firecracker powerhouse that is determined to teach the world all the while possessing a body that does not match the soul.

What I have come to realize in all of this is, this is normal guys. I am no different than anyone going through any struggle. It is real, it is normal, and it is going to be O.K. Now I just need to find sticky notes to help with the brain fog and some great heels!

Until Next Time.

 

XOXO,

Undefeated Diva!

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Technology and social media have brought power back to the people.
Mark McKinnon

Good Morning World and Happy Friday!

I hope that all of you are having a wonderful morning, noon, or night. I have been asked by a couple of my blog family members if I was on any social media and I was except for Facebook, that is until now. If you ask you shall receive:
https://www.facebook.com/pages/Undefeated-Diva/1386807961561329

One of my blog family made a fantastic point, it is much easier to communicate via FB with anyone then it is to do so through my blog. So if you have some time come on over and show your support!

Thank you all for your support of my writing and my journey!

Much love on this Friday,
Undefeated Diva

Frustrated expectations….

Expectation is the mother of all frustration.
Antonio Banderas

There is nothing like getting let down by your own. What people would see as negativity, is really just realism but as they say ignorance is bliss. There is nothing like waking up and having to calculate your every move, for fear of the harsh repercussions. Repercussions the every day man couldn’t fathom.

The hardest part of the whole process… is that the biggest let down comes from you, yourself.

It’s not done intentionally, HELL you don’t even have control over it but the harsh realization is your own body betrays you daily, hourly, or momentarily. The harsh realization that even if you wanted to wish with all of your mite, you can only plan ahead so far because you can’t plan for your own to let you down.

I have missed many of celebrations, gatherings, and important moments. I pride myself on making the moments that matter most, but if I am real with myself I know I have let someone down along the way… Mainly myself. Not only does my body betray me but my body reeks havoc on even my iron clad emotions. I have built an armor of “hey it’s ok” or “don’t stress you have next time” mantras, but honestly there is nothing like being let down by your own.

Today for instance, I was supposed to get up and do things that have been needed for sometimes… (My poor car needed to get to the shop since December!) This morning I was debilitated. I mean, when I stood up my knees buckled out from under me. No big deal right? My legs must have just been asleep… WRONG, the pain that accompanied my legs buckling were like shards of glass. Buckled over the sink to do something as simple as brushing my teeth, if it weren’t for the sink I would have been sitting on the floor of the bathroom brushing…

See… most would say “you have no control” as an excuse to make the situation more tolerable. WELL, let me give you some insight. NOTHING and I mean NOTHING can protect you from yourself. Nothing was going to make it better this morning when I looked up in the mirror and was literally dangling from the bathroom sink because my legs betrayed my body and buckled.

So I ask, how do I protect myself from myself when I have no control over it? How do I protect myself from growing so much emotional scar tissue that it impedes on my compassion for life? How do I lesson the blow when all I wanted to do was get up and brush my teeth?

The simple answer is… I DON’T.

It’s harsh, and it hurts, and it breaks down my soul at the thought but I can’t plan against Lupus. I can’t plan against the destruction of my own body against itself. So I roll with it. I smile, I make light, and I pack a go bag! I revel in the moments that I do get and pray hard when in the moments that hurt most… But the question still remains. How do I protect myself from growing so much emotional scar tissue that it impedes on my compassion for life? How do I not allow the constant let downs take such a toll on my psyche?

How does one get over being let down by your own? You may ask what I mean when I reference “your own”? It’s different for everyone, but my very “own” is my body, my legs, my lungs when they do not function, my heart when it renders me to a hospital bed, my muscles that jump just because, my emotions when they run away from me because of the anger and hurt. My very OWN BODY… The one thing that I should have control over, and should learn to trust and depend on… I can’t! No matter how much I try, and TRUST ME I TRY… Vitamins, holistic remedies, namaste at the beach… Prayers, western medicines… It still betrays me!

So now what!?

Now, I do what I have learned to do best. Push RESET… and for the first time in months, I am going to TRY and nap! I am going to try and put a small piece of my dignity back in my emotions and nap for as long as my body will grant me.

Thank you for listening today… Today I just needed to be heard. I needed an ear and a tissue…

Thank you support system…
Thank you for having my back even when my own body won’t!

XOXO,
Undefeated Diva!

Fight for your life…

Victory is always possible for the person who refuses to stop fighting.
Napoleon Hill

Breath I say…
Breath damn it!

Heart is racing, sweat streaming, pain shattering through the chest, and all the while your staring life in it’s eyes.

Breath I say…
Breath damn it!

Crowded room, phones ringing, gasping for what little air you can, and all the while knowing that you are trying.

Breath I say…
Breath damn it!

Knowing your being watched, having no control over what is going on, seeking a quiet place in your head to process, all the while you know your fighting for your life!

Have you ever had a moment that you KNEW you were in the fight of your life? In that very moment things could change forever? I have had these moments by the handful, but they never cease to rattle me to the core. As I get older and the harsh realization that this is my life truly sets in, these moments shake me to the inner fibers of my being.

Hospitalization 3 Million was no different. After a bout of Bronchitis/Pneumonia I ended up laid up in a hospital bed for four days. On day two I was yet again in the fight for my life. It started with a simple cough, which spiraled in to a code calling kind of day. We are not talking a computer code here ladies and gents, we are talking a code blue/ respiratory distress call. In any hospital nationwide they have a code system, Code Blue is the universal call for Respiratory arrest/distress. This is not the first Code Blue I have been the victim of, but this is in fact the first one of my truly adult life and the first since my diagnosis. This is also the first episode that my significant other and a friend witnessed first hand.

Coughing… sitting up… coughing… standing… coughing… And then the harsh realization “oh shit something is very wrong”. I pride myself in knowing my body like no other. I can tell you like clock work how it will work 95% of the time. Lupus has made me, my very own Dr. House. With that said, the harsh realization that things were going to take a southern turn hit me and I gave him the look that my family say’s that I give when, they KNOW I need help. I only give this look when I realize the atomic bomb is about to go off in my system and I won’t be able to do it on my own. He went searching for the nurse, and by the time he came back (no nurse in tow) I was in full-blown distress. By the time the nurse strolled into the room, there was no turning back.

Breath I say…
Breath damn it!
Tears and sweat streaming down my face… Gasping for air as if the harshest tide had taken hold of me.

This was my mantra at this point… I am sassy by nature, but in moments like this I allow the anger and fire to ignite the survivor in me with fierce vengeance. I allow it to push me beyond my normal limits and fight in a way most would have to see to believe. On this day, two people saw this very fight. Just as I was going South a friend decided to pop in and say hello. He quickly realized that something was wrong and cleared the room, but was close enough to see the happenings. He in fact told me later “I watched you fight for your life”. (Hence the title). Two nurses, a respiratory therapist that had seen me intubated and knew this could go either way, and a Critical care Pulmonologist sat and tried to get me back to normal. I fought and dare I say I was FUCKING ANGRY… At a young 28 years old and a productive member of society, I take care of myself and everyone around me… WHY WAS I IN THE FIGHT OF MY LIFE?!?! Why, because I have Lupus and I ended up sick with Bronchitis/ Pneumonia!

Breath I say…
Breath damn it!
Gasping…. Gripping the bed… Trying not to pass out from lack of oxygen…

BREATH LUNGS… BREATH!
I fucking hate you body…. BUT BREATH… For the love of all that is holy in this world… I command you to BREATH…

One… Single… Fucking… Breath…

One full breath! BREATH BODY BREATH!

Just when I thought I had no more umph… I thought of my family, I thought about how far I have come, I thought of my future… This is where the fight really took a turn. I thought of all of the things I had yet to accomplish. I didn’t worry that I was going to gain 30 pounds from the amount of steroids, I didn’t worry that my iPhone5 was in the room, I didn’t worry that I was in sweats and a tank top and look like roadkill… I thought WHAT HAVEN’T I DONE! I am not ready for this to take me, even if it takes me for a day or two (being intubated was not an option for me!). I refused to let it take another day from me. So I got angrier… I found the little place in my head, my new happy place. A place I have found myself going to in my darkest hours. This place houses beautiful sand and small faces of my future. Then the medicine came, and the voices of the room flooded my thoughts, and I was back! 45 minutes I fought and gasped for air… The code was called off and I was coming back slowly. More steroids pumped through my veins, oxygen mask on, sweat streaming down my face, heart rate in the 150’s/160’s… BUT I was back. The people around me knew I was back when in response to a comment by the dr I said “come closer so I can kick you in the chest and see if you can breath”… Gasping and all, I was a firecracker and if I was going out, WELL I was going out with a BANG!

SO what did I learn… because I learn something every time I go through an episode like this. The episode can be exactly the same but I still learn something different every time. I renewed the fact that I am a fucking fighter… I renewed the fact that I can do this… BUT most of all I learned that I still have so much more to live till I am ready to go out in a blaze of glory… When I go out, it most definitely not be in a hospital bed with a dr telling me to “relax” while I am essentially drowning! 🙂

Moral of this story… learn from your moments… And if there is an ounce of life left in you… FIGHT!

Because when you can sit on your couch and look back at the situation, you can say.. I fought for my life and WON!

XOXO,

Undefeated Diva.

Incoherent Frustrated Ramblings

Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward.
Kurt Vonnegut

The beating of my thoughts ring loudly in my ears.
The constant thoughts of living with all of these fears.
The thoughts have become overwhelming, the feelings undeniable.
Trying to gain control over something that is so indescribable…
Life still moves on, so the chaos grows.
Need to find a source of control, the knowledge that it may be an endless hole.
Seeking an an alternative to ease the need.
Second chances, but fear of failure or loss supersede.
Present circumstances, but ultimate happiness in the light.
The loss of control again, will the night never turn on the light?
The words of ill informed physicians.
Words of well wishers but advice out of unknowing mouths.
The need to run consumes me, the need for control keeps me still.
If only the world would still, for just a moment in time.
A moment to gain composure or pause the thoughts that fly by.
Medicines, appointments, good news and bad, breathing problems, and brain fog are all in my path.
The pain of the past, the pressure of the present…
Pushes me to limits I never thought I would see…

Sincerely,

Undefeated ME!

You call me a monster… I call it PASSION

A taste for truth at any cost is a passion which spares nothing.
Albert Camus

See, Albert Camus got it! There is always that nickname growing up that you JUST don’t connect with. My nickname was “monster” or “my little monster” as my mom calls me, although I am taller than her now. Anyone who knows my family knows we love each other to death and would beg, borrow, or kill for each other. Nevertheless the nickname was bestowed upon me at a young age. Unfortunately, some have picked up the nickname and used it in a derogatory manner, which was never my mothers intent.

My mother initially bestowed the nickname on me as a child because even as a curly blonde haired, blue eyed child I was brutally honest. Although I respected my elders, I only did so to the ones that deserved respect. Even then I was very secure in myself, 7 year old me would tell the truth no matter the cost… AND trust me there were costs! As the years went on, my honesty grew to pure blunt honesty. I would and still till this day, say the things people are too worried or too shy to say. I realize now, that I have most likely embarrassed my mom more times than I can count.

The nickname, although steamed from my honesty it also steamed from my gumption to protect and “fight back”. I am not talking literally fighting, although if needed to protect my family I am not opposed to taking someone out! I am talking about the fire that keeps me alive till this day. I have had my share of verbal lashings, but boy have I dished out many more verbal smack downs. Sometimes I look at the world and wonder, WHY… Why do people take the shit they are handed?!?! Heres an example, I went to establish with a new specialist recently and let me tell you, someone needed to let her know that customer service is on the rise again! So I let her go about her specialty but not with some kick back… I was very dry and very matter a fact. Towards the end I realized this Dr. needs to be told. So I let her know… I let her know that the way in which she conducted her evaluation lacked compassion and although she was a physician she lacked good bedside manner. I then proceeded to walk out of my appt.

See ladies and gents, I was given the nickname because I stood up for myself and spoke the truth. Ok, at times a bit harsh BUT never the less honest and sure of my actions. I was not put on this earth to cater to other’s insecurities and emotions, I was put here to be me. Again, although the nickname was given to me as an endearing and honest one, it has been used by others as a way to hurt me. So I have decided to throw a spin to it!

I am called a “monster” by other people outside of my mom because they can’t handle my honesty. This my friends is not my problem. In a world that gives participation awards for just trying, it’s about time someone sheds some fresh air on things. Honestly, call me any nickname under the sun because to me it just means I am PASSIONATE! Those that have met me know, when I speak I speak with conviction in my words and in my mannerisms. I am sure about what I am saying and how I am saying it. I don’t do anything I am not passionate about. I don’t see a point in living life without passion in everything you do!

SO, call me a monster… Call me a bitch… I call it PASSIONATE!

Mom thank you for the inspiration today! Thank you for seeing in me what others did not see. I know that you love me for the little but taller monster that I am. Above all, THANK YOU… for always having my back even when I get a little carried away! 😛

Love you Mom!

Toodles,

Always Passionate Undefeated Diva “AKA Little Monster”

The moment of realization…

The good thing about having this illness is that it allows me to be a little bit crazy.
Neil Cavuto

Humor or tears are often the only ways to pull myself out of my “realization” state. Being who I am, I go through life pushing through like a soldier. I never leave a man behind and unless it’s broke I don’t fix it. It’s rare I TRULY complain about something and I never let my illness consume the forefront of my mind. Although I live in the light and positive.. there are those moments of realization.

Monday afterwork I had the moment I refer to above. I was standing in my bathroom ready to inject my medication with a 3CC syringe. Now, I was in the medical field for many years and have injected myself so many times before, that quite frankly it is second nature. Monday night was just different. I looked down at the tip of the needle and say… Fuck! OBVIOUSLY I realize I have Lupus but for that moment… it hit me. The years and life moments leading up to Monday did a little show in my head. (No ladies and gents, life was not flashing before my eyes) I was just taking it all in. How did I get to this point in my life? How amazing is it that I get to take control of my health by this injection? The thoughts about how far I have come, yet how far I still have left to go. With all of these thoughts flooding my mind, a bit of sadness seeped in. If I said that I was always smiles and rainbows, someone better asking me what I am smoking.

After a moment I took a deep breath and imbedded the needle in a nice little roll in my belly! The medicine only stings for a moment and then I am on my way, with a little bruise to remind me of my weekly events. (Bruising is part of the game, my nickname should really be Peach!). Nevertheless I went about my evening like I always do, pushing any lingering emotions to the side and going about my evening. This day though, it took some effort to do what I normally do with ease. I wasn’t able to push aside my emotions so easily.

In that one moment I experienced anxiety, sadness, helplessness, frustration, humility, and ANGER! I felt like I went through the grieving cycle in one foul swoop! The very moment of realization I had took me to a place I rarely go in my head. A very real and vulnerable place that I constitute as negative at times, but it happens. It was a moment that I realized although I kick ass and I am a fighter that this illness is a mean mama JAMA! I realized that this illness has changed my life forever and there was nothing I could do about the changed good or bad… ABOVE all I resolved to realize that I don’t care what it takes… LUPUS will not get me! I will fight like so many before me and for those after me! I will fight for the one’s that feel like they can’t fight any more. I will fight till my very last breath and when my day comes to leave this earth and meet my maker… I will leave this earth knowing I fought Lupus and won! I will know that I died a woman that didn’t let that son of a bitch get me…. Because I will have lived a life of pure happiness regardless of how many injections and hospital visits I have under my belt!!!

XOXO, The sometimes angry but ALWAYS sassy,
Original Undefeated DIVA!

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Giving Thanks Everyday!

When you rise in the morning, give thanks for the light, for your life, for your strength. Give thanks for your food and for the joy of living. If you see no reason to give thanks, the fault lies in yourself.
Tecumseh 

Good Morning World…. 

Although I give thanks daily and rarely follow the herd in the “whats cool to do right now” category, I decided to give a public rendition of thanks today…

 

As I sit in my comfy chair with a Pug named Harley on my lap, watching my every key stroke… I stop to inventory my life. I like to take a mental inventory every morning and every night, and a lot of times throughout the day. 

As I watch the sun start to illuminate my home with it’s beautiful rays, I thank the big guy for my life. When is say my life, I mean the breath I take, the gift of sight I have, and the ability to hear the amazing life around me. I am grateful beyond belief that I am standing (ok, sitting at this moment) and able to furnish my family with a beautiful Thanksgiving meal today. I am grateful that I will have the ability to sit surrounded by immense love and share with my loved ones a day filled with laughter, loudness, and LOVE. 

Nothing makes me happier than to fill their bellies. Call it an innate sense of womanhood or being Puerto Rican, but I find joy in watching my loved ones eat something I have prepared. 

Life is amazingly crazy though, I find thanks in the smallest of things. I give thanks for the smiles I see daily, for the laughs I induce or get to witness, and for the observation of love exchanged. I am thankful for new adventures, for the daily hugs I receive, and for the I love you’s I hear. I am HUMBLED beyond belief for being afforded the opportunity to be part of so many peoples lives. 

 

To say I am grateful for everything would be an understatement, because most wouldn’t think to be grateful for the air they breath. Me, well let’s just say I have had my share of respiratory failures to be grateful for even one breath never the less continued breathing I get to do.

Sometimes I think to myself that I must have been a saint in a past life, because I have been given so many chances at life. I was recently given a second chance, something I never thought I would be afforded again. I thank the big guy an infinite amount of times daily for it. Sometimes the road less traveled looks long and hard, but I have a feeling at the end of this one there is an amazing lining. So I am thankful for the opportunity to take the twists and turns. 

 

So to bring my rambling to an end, I am thankful for my life… All the crazy turns, loudness, laughter, pain, tears, and above all LOVE that has accompanied it because for lack of that I wouldn’t be me and here! 

 

Hope you all have a beautiful Thanksgiving filled with as much love, laughter, and FOOD your little hearts desire! 

 

XOXO, 

 

Peace, Love, and Turkey Grease, 

 

Undefeated Diva