Like so many people around the world, I have been glued to the Olympics as much as I can. I am a very proud Puerto Rican woman by nature, but I am elated to share…
The first Gold Medal EVER for Puerto Rico 🇵🇷 was achieved by Monica Puig a 22 year old, Puerto Rican Woman!!!
http://www.justjared.com/2016/08/13/monica-puig-wins-puerto-ricos-first-gold-medal-at-the-rio-olympics-2016/
Screaming from the rafters!
Xoxo,
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!
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
Man has got to know his limitations. Clint Eastwood
“Oh you look better”, “you don’t look sick”… Or the ever agonizing look of pity or question of whether you are faking it…
I was ashamed of myself when I walked out of the doors of my school today. Sunglasses on, bags on my shoulders, I just left after what should have been me waiting to speak to my advisor. See, because even the fiery advocates get tired of advocating sometimes.
Unfortunately, this semester of college has been one of my toughest. I have been in the middle of a flare up of epic proportions. Although I have my good days, those have been farther and farther apart. The good days are actually bad day’s that I have medicated myself, slept for 2 days prior to them, yet still take 2 hours to get dressed. Often times I wonder if I will even make it to class most Wednesdays, never really thinking about the on-line classes I can’t seem to wrap my brain around due to the epic brain fog. Today I had the option of sitting with my advisor, which happens to also be a current professor of mine. I sat while she spoke to another student and then it hit me. I have fallen behind in her class and here I was going to sit in front of her and discuss my future. Although my face had make-up on (miracles do happen), I was put together, and standing upright she could not see the turmoil and pain I was in. The impending migraine that was threatening a night of torture and the fact that the sheer touch of my shirt to my skin felt like shards of glass. Nor would she be able to tell that my body was threatening me with the possibility of passing out from the dizziness I have had for two days. So as I sat there and watched her speak to another student, I made the decision I was allowed to say I AM DONE… for the day and leave. For a natural born advocate like myself, it was a realization. The realization that I had “given in” to the pressure of stigma, that I talked myself into walking out when I hadn’t even given her the chance to talk to me. What I did do though, was show myself that I know my limits!
Every person has their limits. Today, I knew that I had reached mine. I knew that a look from her or too many questions would have turned me into an angry and defensive me. I would have been no advocate at all, I would have been a stereotype… So I left. As I felt defeat walking out the door, I felt no more as I drove over the beautiful bridge met by sunshine and clear waters in my town. I knew I had done the right thing, which was advocate to myself and for myself that today was not the day.
So the lesson for today… Is even the strongest of us advocates gives in. Sometimes it’s ok not to “advocate”, if you know that really you are causing more harm than advocacy.
XOXO,
Tired Undefeated Diva
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! 🙂 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!
It is during our darkest moments that we must focus to see the light.
Aristotle Onassis
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…
I DANCED!
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
undefeateddiva@gmail.com or leave a comment!
So … on ward to your moments everyone!!!
With Love and a Cough,
Undefeated Diva!
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!
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!!!
Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward.
Kurt Vonnegut
The beating of my thoughts ring loudly in my ears.
The constant thoughts of living with all of these fears.
The thoughts have become overwhelming, the feelings undeniable.
Trying to gain control over something that is so indescribable…
Life still moves on, so the chaos grows.
Need to find a source of control, the knowledge that it may be an endless hole.
Seeking an an alternative to ease the need.
Second chances, but fear of failure or loss supersede.
Present circumstances, but ultimate happiness in the light.
The loss of control again, will the night never turn on the light?
The words of ill informed physicians.
Words of well wishers but advice out of unknowing mouths.
The need to run consumes me, the need for control keeps me still.
If only the world would still, for just a moment in time.
A moment to gain composure or pause the thoughts that fly by.
Medicines, appointments, good news and bad, breathing problems, and brain fog are all in my path.
The pain of the past, the pressure of the present…
Pushes me to limits I never thought I would see…
Sincerely,
Undefeated ME!
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!
UNDEFEATED DIVA 