I dare you say something!!!

“Not guilty by reason of Prednisone”
Gorgon

BOOM! You have a flare up, you stub your toe, you have chest pain, body aches. Just pick a complication, because 9 times out of 10 the treatment plan is still the same…Drum roll please….. STEROIDS… Most often Prednisone, but steroids come in several shapes and dosages.

You get sent home and reap the reprucussions of the side effects, of a medicine that is keeping you alive. The list of side effects to steroids is endless, but for me I cringe at the thought of the wrath. The silent hunger that creeps up on you and wakes you out of a dead sleep (when/if you can actually obtain it). A hunger that claws at your insides like you have not eaten in days… When honestly it has only been 2 hours! This of course is only one of many side effects. For me, a short fuse would not begin to describe the C4 loaded box in my chest. I know it’s there, I know why I am emotional, but hell if I can control the explosion once it is ignited; most often over nothing… *BOOM*

Then as the dust settles, if you are any type of human being you assess the casualties. Often times leaving in it’s wake it’s share of emotional hurt or pain. I am not saying this is right, but at least I am human enough to admit the truth. This is the problem ladies and gentlemen, often times people say they are being “real” when in all honesty it is the “real” they want to portray. Well, me, I am here to give it to you straight. If you don’t like it, well thats okay. I would be doing everyone an injustice if I sugarcoated even a word in my blogs. The down and dirty, good/bad/and sometimes ugly truth, SHIT HAPPENS and chronic illness SUCKS…

So to make me happy… Tonight as I wrote this up, I partook in a mini fiesta in my kitchen! I’ll give it to you guys, it did in fact look like I was hiding something; As I stood in the corner of my kitchen with only the light from my iPhone flashlight, going to TOWN on some amazing chips and dips… I laughed, because I sure as hell had NO SHAME! I had ignored the hunger for so long that the hunger pains actually ensued. My stomach started cramping up and the nausea kicked into hyperdrive… SO I had a choice… Eat the chocolates in my nightstand (resealable bag!) or get up and grab something more.

I will admit, I was craving the ultimate Philly Cheesesteak at that moment. In the end, I ended up with my small little fiesta and boy it was a party in my mouth! My fellow spoonies out there know what I am talking about. The first bite of whatever meal or snack you have when your on steroids is like nirvana. You could be eating a damn burnt hot dog and it tastes like the best meal in the world! My chips and dip did just that. The first bite of my chip, I threw my head back and “mmmm”. It sounds insane, because frankly it is. How could a medicine that is supposed to help you stay alive wreak so much havoc on you. Haven’t you been through enough? I mean for heaven sake you are on the medicine because you are not well.

 

NEVERTHELESS… Exhibit A below is a picture of my 12:17am fiesta! It hit the spot so well, I am thinking I may actually get some sleep tonight! SO, to my fellow spoonies out there suffering from midnight, midday, mid-second hunger/craving pains… I’VE GOT YO BACK! Ain’t No Shame In My Game! Eat, not to the point of being sick… but eat. I snack regularly, I eat fruits for snacks such as bananas (to keep the Potassium balances (Yet another problem from steroids)). I also get the 100 cal snack packs and although I may eat more than one, it is better then eating a damn Philly at 3 am!

In the end, I dare someone say something to me. I almost beg for someone to say something because I would use the opportunity to ask this…

What would you do if the medicine that was supposed to save your life, is also killing you slowly?

(YOU EAT CHIPS AND DIPS! BOOM)

🙂 Good Night and sweet dreams!

 

XOXO,

ME!

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1 Week Left!!!

One week until the very first time Team Undefeated DIVA’S will be represented in person at the 2014 Lupus Walk of South West Florida… I can’t tell you how flipping excited I am. I have represented family and friends in many walks and have been on the planning crew of several works BUT I have never done a walk for myself! This is a first ladies and gents and I am both nervous and excited. I am raising awareness for something that has taken by body and life hostage… AND I get to do this with some of the most amazing people in the world… My freaking A TEAM!!!!

Below is a small passage from the event I created online. If you have a moment check out the link. If you aren’t doing anything next Saturday, WELL come on out and hang with us for 3 hours!!!

Hello Friends and Family,

At 28 I have been through a journey most would never see from looking at my face. I have seen the dark side of an illness that does not discriminate. I fight back daily, but I have decided to fight back in public now! Join me in walking for MY cause…. Join me in walking to find a cure for Lupus.

You can donate or join my team… or cheer from the sidelines… Your support in any way possible is appreciated! Thank you for supporting me in my journey and the Lupus Foundation of America – Southeast Florida Chapter. Your contribution is greatly appreciated.

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1084765&supId=394273168

With Love and Kisses,

The original 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.

Walk and have my back!

Walking with a friend in the dark is better than walking alone in the light.
Helen Keller

Hello fellow WordPress Friends and Family!

At 28 I have been through a journey most would never see when looking at my face. I have seen the dark side of an illness that does not discriminate. I fight back privately daily, but I have decided to fight back in public now! Join me in walking for MY cause…. Join me in walking to find a cure for Lupus.

You can donate or join my team… or cheer from the sidelines… Your support in any way possible is appreciated! Thank you for supporting me in my personal journey and the Lupus Foundation of America – Southeast Florida Chapter. Your contribution is greatly appreciated.

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1084765&supId=394273168

With Love and Kisses,

The Original Undefeated Diva!

Team Undefeated DIVA’S

Hello Everyone!
Well, I have decided to participate in the 2014 Lupus walk in Naples, Florida. I have always created a team for the Down Syndrome walk every year and have participated in many other walks in support of people that I love and care for. Never have I walked for myself…
Many may think that it’s a piece of cake, when in fact I am finding it harder to write this email this time around. Although all of you are aware that I was diagnosed with Lupus in 2011 and I am not shy to share my story, it is much different doing so in such a big public forum. It in fact puts a face to a chronic disease, but like anything else… I will do it with SASS! 🙂

At 28 I have been through a journey most would never see from looking at my face. I have seen the dark side of an illness that does not discriminate. I fight back daily, but I have decided to fight back in public now! Join me in walking for MY cause…. Join me in walking to find a cure for Lupus.

You can donate or join my team… or even cheer from the sidelines… Your support in any way possible is appreciated! Thank you for supporting me in my journey and the Lupus Foundation of America – Southeast Florida Chapter. Your contribution is greatly appreciated.

XOXO,

The original Undefeated Diva!

http://shar.es/EMCHw

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