If you ask me what I came to do in this world, I, an artist, will answer you:
I AM HERE TO LIVE OUT LOUD! – Emile Zola!
I present to you…. My future t-shirt for Team Undefeated Divas!
I have decided to trademark it for the future use of Lupus Awareness!
I present… AINT NOBODY GOT SPOONS FOR THAT!
Have to admit, this hysterical creation was manifested out of a heated moment. I was feeling very overwhelmed by what I call a “lupus moment” and I yelled…. Shut up, AIN’T NO BODY GOT SPOONS FOR THAT RIGHT NOW!!!! In the moment I was angry and very serious… but all it took was 30 seconds to realize what I said and burst out in immense laughter.
It seems that all of my best creations are created out of madness :). So here you go.
Technology and social media have brought power back to the people.
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:
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,
There are moments which mark your life. Moments when you realize nothing will ever be the same and time is divided into two parts, before this, and after this.
I saw this quote a multitude of times this week and although I felt I understood it, there came a moment this week that I truly realized I didn’t know the magnitude of it until that very moment things changed. I disappeared for a few days this week on a quest of my own. A quest of solitude, enlightenment, and adventure. To say that I found it all would be an understatement of epic proportions. Not only was I blessed to have had the opportunity for a free getaway, but during that getaway I was blessed beyond words. I was blessed to know what it is like to be “heard” or “published”(in a way).
During my adventure I found a little piece of me that I have put on pause for some time, that piece of me that was daring beyond boundaries and fear. So one day I ignited her, that part of me that has been ready to take on the world since the womb. Wouldn’t you know that my questions and hard work would pay off in dividends.
I am beyond humbled to announce that you are now reading one of 2014’s TOP Lupus Blogs from Healthline.com! I received the email on Tuesday afternoon and it rendered me speechless! The editors will have it up in the next couple of weeks, but made sure to include the embedded photo below so that I could include it on my blog. I can not express how much it means to me to be able to advocate and share not just my story but that of millions of others on a MUCH bigger scale.
Thank you to all of you that have followed my journey from day one and that follow my writings now. Above all, THANK YOU to my A-Team… for always having my back and kicking me in the ass when I need it!
Rejuvenated Undefeated Diva
I think whether you’re having setbacks or not, the role of a leader is to always display a winning attitude.
2 weeks I tell you!
I never realized the severity of my pain, until it was longer present. The loving caress of modern medicine helped me achieve what I thought was impossible… a pain free life. Unfortunately today, just 2 weeks from the first blissful day I am suffering an epic setback.
Today is a 6 or 7 kind of day. In my house we go on a 0-10 scale for pain.
0-4- Is an amazing day. I can jump, run, and have energy that will carry me most of the day.
5-7- Rough… Swelling and pain accompanies most of my body. My body hurts to the touch and I have a bit of brain fog.
8-10- Debilitated. These are the days I drink my morning coffee out of a straw!
Today… Well I am a 6-7. Not truly terrible, but in enough pain to render me a bit useless this beautiful morning. This setback though, hurts more emotionally. Truthfully when you live with a chronic illness that is accompanied by chronic pain you learn to live with it. The pain and symptoms become a part of your daily life, so to be honest there comes a point that you forget what life was like prior to it all. The 13 days prior to today were amazing! I was able to climb a jungle gym, to stay awake for a 9pm show, and experience consecutive day’s of getting dressed with no pain or having to pick out an outfit that wasn’t difficult on my hands. On day one… I didn’t believe it, I walked around as if I was in pain just because I was fearful I may have been hallucinating! 🙂 Yes, quite a crazy concept but again I didn’t remember what life was like prior to all of the pain and hurt. By day 7 I was back to being the closest version of “me” I could remember. I was doing laundry, reorganizing my office, and banging out papers for school like if it were the easiest equation in a math book. I laughed a little harder and swore that I would live each day a little more now, which I thought was impossible since I am one to climb a tree if I feel compelled to.
What I hadn’t realized was that although I was “living my life to the fullest”, I was doing so in the realm of “pained Chris” not the real me. I always considered the repercussions of even a long shopping trip, or a longer drive to the pharmacy. So really was I living? or was I existing within the means I set forth for myself? Either way… I was alive again!!!! Today that feeling was setback, I won’t say crushed because it was real! I remember what it was like before the pain and anguish. I remembered what it was like to be able to be hugged and not cringe at the pain when someone was showing me love. I remembered what it was like to wake in the morning and not have to worry that I wouldn’t be able to do something as simple as brushing my teeth.
So setbacks… I love the quote above by Colin Powell, because in the end it’s my attitude that has gotten me this far. I was not delusional in my understanding that I would have bad day’s along the way, it’s part of the illness I live with. I won’t allow it to crush what I remember now, so thank you modern medicine for the reminder. I will be pushing to find that life again… to find the me before the pain.
Love, Peace, and Chicken Grease!
It is during our darkest moments that we must focus to see the light.
Sitting in my car at the stop light, I laugh… and not a funny HAHA laugh… An all out, belly holding laugh.
Soaking wet… freezing… but laughing.
When your someone who has a chronic illness you live with the realism that every choice you make may have a repercussion of epic proportions. So often times you become cautious of everything you do. It’s a natural response to the possibility of the atomic bomb going off in your body. It is human nature to protect yourself against the real pain. It’s so easy to become the over cautious person that never does anything that pushes beyond the limits they have set for themselves.
I pride myself on not being that person, although that normally ends me up on the wrong side of things. I can’t tell you how many times I have pushed myself too far, but to me it’s my way of living and fighting back. So let me go back…
Sitting in my car laughing… Soaked… and freezing…
My elation and sparkle at that moment is from the very moment I decided to live in just 5 minutes prior. Standing in a parking lot and it started to pour… I mean.. POUR…. At that moment I had a decision to make… Run and get in my car, knowing damn well I would still be some form of wet ANYWAY OR dance! So…
2 weeks out of the hospital and at this point I was most likely going to get sick anyway. I was going to get wet either way, the questions was… was I going to make the being sick WORTH IT! So I did!
I looked up and let the rain hit my face and I did what any blue blooded, American girl SHOULD do… I jumped up and down and laughed at the thought that I was going to reap the repercussions later BUT for now… I was going to make THIS damn moment WORTH the pain!
I jumped up and down and danced in the parking lot… I laughed at my none sense and REVELED… I mean TRULY reveled in the moment. I smiled at an on looker and when he said… Your going to get sick out here… I laughed and told him it was worth it! Honestly, because to me that very moment WAS worth it. For those few moments… those very few moments I was FREE! I was free of the ties of responsibilities and pain. I was free of anger and frustration. I was free of my own limitations and that of my body. I WAS FREE! I knew in my heart that it would hurt later, but in that moment I made it worth the pain!
See ladies and gentlemen, NO MATTER what we do as the beholder of a chronic illness we know those bad days are coming… Sometimes we know when, sometimes we don’t. So when a beautiful moment like that happens we have a choice. Do we take it or not? Many would not have taken it, many would have run to their cars and been upset that they ended up wet even given their precautions. ME… I reveled in it! I chose to LIVE that very moment. I chose to throw caution to the wind and say FUCK YOU precautions and pain… BECAUSE this moment right here… RIGHT NOW… Will be worth it to me, BECAUSE I SAY SO!
So… I made it happen. When I got into my car, I was soaked… and in need of a seriously warm shower and dry cloths. As I drove home I caught a red light. I believed it to be Devine Intervention, because at that moment the rain stopped and the sun broke threw just a small portion of the clouds. I couldn’t help the rumble of laughter that ripped through my belly. I laughed such a laugh that was filled with love and appreciation at that very moment. My life is so amazing and it is moments like this that make it so.
So to my fellow readers out there… I have homework for you!
I DARE YOU … to find a moment in the next couple of days, a moment that you have a choice to make it amazing or take the usual route… AND I want you to make it worth it! Make the moment worth it all… For go your responsibilities and that little voice inside that tells you to do the “mature” thing and take the moment and make it yours.
Then if you want to share that moment, I would LOVE to hear it! Can always email me at
email@example.com or leave a comment!
So … on ward to your moments everyone!!!
With Love and a Cough,
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.
With Love and Kisses,
The original Undefeated Diva!
Expectation is the mother of all frustration.
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!
Victory is always possible for the person who refuses to stop fighting.
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!
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.
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.