Keep your head up…

Never bend your head. Always hold it high. Look the world straight in the eye.

It is not always easy to hold your head up in the middle of a storm For many reasons it’s easier to look down. The only reason I look down is because it is the path of least resistance. When you are in the center of a storm, the last thing you want to do is answer questions. To answer questions or cater to anyone else’s emotions, do they not see you are in need of your own TLC? So to me it has always been easier to keep trucking. Often times people take not holding one’s head up as a sign of an insecurity. I often wonder if these people ever stop to think, maybe we just don’t want to talk to you it has nothing to do with insecurities. I quite frankly am very secure in who I am. Keeping my head low has nothing to do with who I am or how I feel about myself.

SO, on with today’s lesson. I spoke to someone I haven’t seen since I was around 7 years old. He was a good friend of the family and he told me today that whatever I do to keep my head up. You would think I had never hear this before, for heaven sakes I give this advice all of the time. Today, it was a little different. Today it hit me differently. I was hearing this message from someone I had not seen in over 20 years but someone that I considered family regardless of the distance. He told me ” Life is going to throw you things and with each passing decade it will throw you more difficulties, but it is up to you to hold your head up through the storm”. It may not sound as profound as it was but it was one of those moments where I took stock of everything around me for fear of forgetting that moment. Maybe it was profound because it was advice not given to me by just anyone. Maybe it was profound because it wasn’t someone just shooting from the hip and giving me advice that didn’t know me from a hole in the wall. Either way it was profound.

In that moment I took stock. I realized I have been in serious self preservation mode for nearly 6 months and probably longer. My current woes are no more serious or important than the next person. Self preservation is not bad, but when you allow self preservation to be all you live well that is no longer healthy. So today I looked up for the first time. I realized I was not looking people in the eye’s any more, today I did. I realized that although I am in the middle of what is one of the toughest years of my life, that I need to look up and hold my head high. Realistically, how else would I see the beauty ahead?

Everyone remember:

Happiness can be found, even in the darkest of times, if only one remembers to turn on the light!ย 

Albus Dumbledore

XOXO

Undefeated Diva

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.ย 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!

The 26th mile…

I try to be grateful for the abundance of the blessings that I have, for the journey that I’m on and to relish each day as a gift.

Thud Thud Thud… Breath Breath Breath…
Sweat beading down my face, the air at my back. The blissful pain in my calves. The fire of another breath of air filling my lungs. The cramping in my side because I had too much water before I started. The sound of the internal thoughts and feelings running through your mind. Do you hear it? The pounding of the pavement? It’s invigorating…

I have always had an affinity for running, although the time has come in my life that I can no longer partake. In my teens I would run to stay in shape for whatever activity my beautiful ADD would obsessive over at the time. It was an amazing release! This was of course the time before iPods existed, if most can actually remember those days. Of course to carry a walkman while running was just not acceptable bulkiness, nevertheless it allowed me to become one with my emotions and my thoughts. Often times I was running around a track or down a trail either leading or following a team of girls, but honestly even back then I knew I was far beyond the mindset of the young ladies I was running with. While many worried about prom and cliques, I worried about my family and what I would amount to in life. Now, that is not to say I didn’t indulge in my formative teenage years, but anyone will tell you I was a unique mindset even then.

I have always wanted to run a marathon, more so for myself and whichever beautiful cause I was supporting at the time. I have always wondered what that last .2 miles must feel like (YES I AM AWARE A MARATHON IS NORMALLY 26 MILES AND 385YARDS, Which normally equals to 26.2 miles give or take). I have always wanted to run and know what the feeling of crossing that finish line was like. To be able to collapse to my knees and thank the lord for giving me the energy to do it. All in all a beautiful vision/ dream of mine. Knowing my family they would be there at the finish line with Wipes, TONS of water, gatorade, bananas, and last but most importantly LOTS OF HUGS AND KISSES! I would know my family was there because we are loud and we show support and love much louder than most! There would be signs and bullhorns and extra TLC at every turn.

In the recent months, and honestly since I was diagnosed with Lupus I have seen my life as a journey. I will say that the recent months though have taught me a great deal. I wasn’t allowing the journey of my life to take shape, because I wanted to control it at every turn I saw fit. If something wasn’t right, I needed to put my spin on it. I awoke myself recently in the middle of the night, covered in sweat and emotional pain that would rival most of my Lupus flares. In those moments of tears and raw pain seared emotions I realized that I wasn’t allowing things to create it’s own journey. It’s very hard for someone like me that is used to taking care of things or being the one people depend on, to not fix things. Control freak? Maybe…. Type A personality? Probably… Warrior? HELL YES!

I have used my Lupus as a weapon, which in reality is not healthy but necessary. It’s not healthy because using it as a weapon is a crutch but it is necessary for the warrior in me never to give up. Can you see I am fighting a conundrum? So I sit and I write…

I have since started allowing life’s journey to form in front of me, although never allowing it to slip from my grasp and placing the flare I so often do on things. I go back to my metaphor… Thud Thud Thud… Breath in and out… Heart rate elevated… sweat beating down my face, back, and legs… The metaphor for running for me is my current state in my journey. I feel the earth below me moving and although it is still there is a vibration in it for me. Have you ever felt your journey taking shape? Have you ever stopped for just a moment and felt life shift ever so slightly under you?

My current view in life… is just that! I feel as though I am running a marathon and I am in the home stretch, I see the finish line to the journey I am on but do not see the rest. I feel like the journey I am on is going to come to an end , but there is something so amazing about to open up. As if the next journey’s light is shining so brightly I can feel it before I even hit this journeys finish line. So here I am journey… Running… I am in the last .2 stretch of this marathon and I am gearing up for the next…

I am hoping for lots of love, laughter, and amazing energy!!!!

XOXO,

UD

Setbacks

I think whether you’re having setbacks or not, the role of a leader is to always display a winning attitude.
Colin Powell

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! ๐Ÿ™‚ 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!
Undefeated Diva!

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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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! ๐Ÿ™‚

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!

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