Tag Archives for Lupie

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!!!

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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Why not yourself?

Good Morning Beautiful World!

“I don’t know the key to success but the key to failure is trying to please everybody.” -Bill Cosby

Initially I had no true inspiration for today’s writings. I felt something bubbling up from the depths of my soul that wanted to be heard, but NADA… THEN BAM!

Today I pose the question, why not please yourself? Before any of you go to that deliciously secret place, let me explain. So often we do for others in our life, because it the “right” thing to do. Many times sacrificing our wants and NEEDS in the process. When is sacrificing our happiness no longer ok?

I ask this question because so often we do for others (not just our families), often sacrificing the things that matter most to us. Many times it’s the mentality that “tomorrow will come”. Well GUESS WHAT Ladies and Gents… What if tomorrow never comes? Morbid in a way, but why continue living for something that is not certain? Why continue trying to please everyone around you when in the end it is you alone at the casket? Yes, again I realize thats a morbid thought process… but real and raw never the less.

If your saying to yourself your not a conformist or you don’t try and please people, YOUR WRONG… If you have put something on the back burner because you HAD to focus on something right now… That of course is no longer relevant, then your fall into what I am talking about. If you have ever gone against the true will of what you want or need because you didn’t want to incite an argument at home, WELL this blog is talking to you too. IF you have ever said, “now is not the time” or my favorite “I’ll do it tomorrow”, then I am talking to you.

Now I get it, we can’t all be rule breakers and hellions. I am not saying to tell work to Fuck off. What I am saying is that in the end it’s you in the casket. When it’s your time to go will you feel that you were 100% happy with your life? Don’t say YES right away to prove a point. I said 100% happy! 100% happy is not saying, “oh I wanted to do this BUT it just didn’t happen and thats ok” HELL NO it’s not ok! So, go out there and jump out that airplane (don’t get to excited and forget your parachute), go out there and kiss the person you love, and go out there and LEAVE IT ALL ON THE TABLE! Today is the day! Tomorrow is not a guarantee, I my friends am living proof.

So go and LIVE!

XOXO,
Undefeated Diva

Public Broadcasting System

::: BEEEEEEEEEEEP :::

You are now tuned in to the Undefeated Diva broadcasting system… Hold on to your undergarments because it’s going to be a hell of a ride!

Well hello public! It is such a pleasure to virtually meet all of you. Welcome to my proverbial cherry popping ceremony, on blogging in a public forum. I have blogged for several years on a site called Caringbridge,  when I was diagnosed with Lupus back in 2011. To say it was my outlet for the darkest hours, would be an understatement. There was nothing like pouring your soul out on a blank canvas that absorbs your thoughts with no judgement. Some may ask, why after so long would I make the switch. WELL… short side of the story, someone dared me to!

See as amazing as Caringbridge is/was, its a controlled forum. I controlled who was invited and who saw the material… I always wanted a much bigger fish bowl to unleash my shenanigans on…. It just took a swift kick in the ass to do so.  So thank you…. to my fellow ass kicker out there in the world!

I look forward to sharing my story, my thoughts, my highs/lows, and of course my PASSION with all that are interested in the journey.

I will be posting some archives from my previous blog… http://www.caringbridge.org/visit/christinapolanco

With Excitement,

Undefeated Diva

:::BEEEEEEPPPP:::

Now back to your regularly scheduled programming….