Here and Now

Never let the things you want, make you forget the things you have.

 

For a dreamer and a natural born planner the struggle is real. A never ending battle to focus on the here and now. How often do we stake claim on a goal for the foreseeable future and blow full steam ahead, but forget to “stop and smell the roses”? Lately, I have been so fixated on the future that I have not stopped to look at what is right in front of me, and above all be grateful for it. I found myself transfixed yesterday in a moment that was both invigorating and self-actualizing. It was the moment I realized, time waits for no one. This is not a new lesson but one that from time to time I fail to keep in the forefront of my mind. As I stood in a moment with my son, standing in the grass of our front lawn I realized just how much I focus on things for my future that I want to give or do. Although there is nothing wrong with wanting to create what I believe to be a better and brighter future, I do see a problem missing out on moments in the here and now.

So with that I took off twirling and throwing my little man. Running around on the lawn and eventually throwing us both in the grass, worn out and gasping for breath (who would think I am only 30). In one simple moment, that smiling face brought me back to the here and now. The here and now to be grateful for that small moment. The moment’s we as people with chronic illness only dream about when we are in a hospital bed or bedridden from our diseases. In that moment, my son reminded me to live. Not in any way shape or form am I saying that I am fixed from this thought process, but that moment, a moment shared between mother and son transcends through every aspect of my life. Stay focused Christina… Take a moment and taste your coffee, smile at the passing company, and above all remember that life is here and now, be grateful. Tomorrow is uncertain for all but especially those of us fighting battles. Hell, today is uncertain. What I know is as I went to sleep staring at my son’s face, I thanked him for the lesson. He will never know the true depth of what he teaches me regularly.

 

Happy Monday Morning!

 

XOXO,

Undefeated Grateful Me

 

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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!

My Wrist Bling (Review)!

If I had my way, I’d wear jewelry, a great pair of heels and nothing else.
Jada Pinkett Smith

I love personalization… Anything with my personal touch or something sentimental has my vote!

Today, I received the most beautiful wrist bling. When I was first diagnosed, I felt like I was alone in the world on the never ending roller coaster ride filled of doctors visits and symptoms. The last 3 years have been filled with some of the most amazing moments… Today was one of them.

Last year I joined instagram and it I learned quickly the power of social media. I now never feel alone! I have a family constructed of the most beautiful and caring people in the world. In my lows I have sunshine and support, in my highs I have support and a team that would rival the olympic team.

Now, one of my beautiful Lupus Sisters makes some bling. I have seen so many of my other beautiful family members get her bling. I finally decided to jump in… and I am so excited and happy with the results.

Review:

From the first moment of interaction about the bracelet her customer service was impeccable. Foxxy took her time to explain the process in detail and took the time to ask in depth questions to get the concept of what I was looking to do. She asked questions, made suggestions, and allowed me to make a change before she sent the finished product.

Upon completion, she sent me the tracking information for my bracelets. They arrived so fast that I did not even get to the tracking information! When I opened the package, there was personalization everywhere. The personal touches and customer service were everywhere. When I opened the box, I was blown away. The quality was phenomenal. I initially had fears with the quality of a “stretchy” charm bracelet. I learned immediately that was not the case. Dare I say that my bling was better than the picture proofs she sent. When I put my bling on, the bracelet was heavy. The quality is superb. The color scheme was wonderful! Iw as so very surprised to find extra personal touches I did not see in the proof. There is nothing about the bracelets that don’t scream “I AM AMAZING and was made with love and care”. What I love most about my bling is that it was it is personal to me! It encompasses the essence of Undefeated Diva. (see photos below)

(The gloves signify undefeated)

So I say, if you are looking for impeccable customer service, personalized bling, and quality product made with love… I recommend http://foxxycharms.bigcartel.com.

 

Thank you Foxxy for my beautiful bling. I think I just found a great idea for christmas!

 

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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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On Facebook

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

I CELEBRATE HER!

I have the most amazing family because every moment we can, we celebrate one another! We never need a “special day” to celebrate one of us…

But today is World Down Syndrome Day! So today I celebrate being the big sister of my soon to be 19 year old sister Ashley!

Today take a minute and do your research, raise awareness within.
Ashley has changed our lives, it’s not always easy but we wouldn’t ever change it!

Celebrate today and everyday, your loved ones! Today I celebrate mine!

Xoxo,
Undefeated Diva

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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.

Loss- Pulled from the archives

Loss
Written Jun 17, 2011 5:57pm

Again, I have not written. Again, I have stared at a blank page and written amazing words and discarded them on multiple occasions. It’s been a month since my last entry and I shake my head because I have many unfinished entries in my head and in the recycling bin of my computer.

LOSS:  

–noun

1. Detriment, disadvantage, or deprivation from failure to keep, have, or get: to bear the loss of a robbery.

2. Something that is lost: The painting was the greatest loss from the robbery.

3. An amount or number lost: The loss of life increased each day.

How many of you out there have experienced loss? I know a number of you that are shaking their heads or saying yes. When one thinks of the definition of loss they mainly think of losing a loved one, or a possession, and for you crazies out there you may even possibly think about something like losing your virginity.

To me loss is not just about a possession or something that you can scientifically explain. To me loss is encompassed in loss of attitude or stature, loss of emotion or understanding, as well as loss of sensitivity. When considering loss, possessions or valued items are only small items on the long list of what I believe one is capable of losing.

Most of you who know me know the bright and shining Chris, but I have to admit that the dark and shadow filled places in my head have grown a little bigger lately. My glasses seem to have a slight film of gray over them. Many will have advice to give to what I just said and some may just say think that I am being negative, but let not fake shield you from reality. The world is amazing and many of times a beautiful place but was the world meant to be enjoyed “this” way?

A world filled with pain, loss, judgment, abuse, neglect, struggle, hunger, war, hatred, and anger all surrounded by pretty flowers and the hope for a better life. Way to go on the negativity Chris right!? Well to me, it’s facing reality! So suck it up ladies and gents because this is real.

I won’t apologize for the truth because I do not believe that the world was meant to be this way. I know a 50 year old man that died just under 3 months after he found out his “back” pain was full blown kidney cancer. I also slept just a floor above a neglected special needs woman that passed away “alone” because she was the ward of a home that was run by a nun that showed no compassion. Add to this combination a little sprinkle of white lies, omitted information, and Lupus and you can see why the small dark corners of my mind have been a thinking place for me the past month.

To update on my “Lupus Lite”, I have canceled all appointments with my previous doctor and have made an appointment for a second opinion. I have gotten off of most of my medications for the Lupus Lite so that my system is clean when I go to the new DR. The reason for this is because the medication they had me on suppressed the swelling in my body and the last thing I want is to go to the new doctor and have her tell me something about not having Lupus. I want my lab work to come back as wacked out as the first two times.

So I won’t finish this entry in a dark place…. The amazing experiences of this month are….

1. Ashley is officially a high schooler!!!

2. Ryan is down for 2 weeks and is spending time with me =)

3. I seem to be making a great career foundation for myself and am enjoying every minute of it

4. My family is healthy and still with me.

5. I got to spend an uninterrupted day with my Jelly

6. I got to see friends and family in Florida again

AND the best one is that…

7. I am alive, “healthy”, and not in the hospital!!!!

P.s. If you have read this… Thank you. I warned you that it wouldn’t always be a happy road and “typing” about it really gave me room in my head to breath.

Love always,

Undefeated Diva!!!