Tag Archives for pain

Another Angel….

20140713-144726-53246471.jpg

Instagram: (see picture above) My fellow #spoonies unite! We gained a beautiful angel today. Prayer for her family! @hannareese17. We just recently started following eachother and in a short time she inspired me! Only 16… Beautiful butterfly, may you soar until we see you again!

I take a moment… To grieve … Only 16… When will they listen? A cure is needed! Are we not loud enough? Do we not stand tall enough? Do you need a face for it! I will be the face. I stand tall! I am loud enough! I will speak for my brothers and sisters that can not. I will stand tall for my brothers and sisters that can not. I am one face of MILLIONS! When will you listen!?

Angry… Sad… ,
Undefeated Diva

Even the fiery advocate gets tired…

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

Don’t Quit!

What’s worked for me is not quitting and being passionate about what I do and not giving up – and when I don’t believe in myself, turning to others who believe in me.
Marc Jacobs

It’s not always easy keeping a smile on ones face and positivity in your heart when a majority of what you experience is pain. Eventually the pain gets to you… It’s cuts to the deepest and most delicate part of your soul!
You learn “self preservation” or what you assume is self preservation but really a form of negativity because of the continued disappointment from the one person/thing you should trust most…. YOUR OWN BODY!! If you can not trust your own body, how are you supposed to trust anything else? Just a simple reality for those of us suffering with a chronic illness. You learn to expect the worst, while praying for a miracle.

Just a thought for the night!

20140415-194436.jpg

Toodles my peeps!
Undefeated !

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! 🙂 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!

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.

Incoherent Frustrated Ramblings

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!

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!

20131226-221011.jpg

This is me… Perfectly, Imperfect

Imperfection is beauty, madness is genius and it’s better to be absolutely ridiculous than absolutely boring.
Marilyn Monroe 

Anyone who TRULY knows me, knows I self inventory… AT LEAST once daily. I’ve always done it, but when I became a Director I felt the need to make it a top priority to do it daily if not multiple times a day. I do this for many reasons, but mainly to keep myself grounded. It’s easy in a world filled with “get it now” mentalities and “hurry the hell up” attitudes to get caught up in oneself. 

To say that my inventory findings are all rainbows and unicorns, would make even my acquaintances laugh. It would also mean that I am in need of some serious medical intervention. Nevertheless, I see the dirt and the imperfections. This weekend has been filled with thanks, self inventory, and self forgiveness. I wrapped the therapy of a lifetime into one weekend, put a new hair color on it, and called it success. 

Although I felt that I came out on top of some things I held in since I was a child, I am human and had my moments of sadness and despair. These moments were fleeting, as many of my debbie downer moments are. One of the moments though, fit my muse marker. I swore when I started blogging that I would be as honest, open, and as RAW as possible. So here goes nothing. 

My muse moment fed into my greatest fear: I fear I will die alone, without a family of my own by my side to leave a legacy to carry on. 

Now some may never understand the need for family. I have also have come to grips that some will NEVER understand the gravity of knowing what facing death young feels like (I don’t wish the knowledge on anyone). Regardless, my fears are my own. As I sat reading several blogs, articles, and researching some options it hit me. “FUCK… I have Lupus”. Being the fighter I am, I rarely stop to really think it through. I just keep kicking it’s ass daily, and move on. Today is just one of those days, I have been in bed most of the afternoon with no plan of getting out. I feel like I have taken Benadryl and my mind is foggy… So vegetate is the name of the game, and folding cloths is my homie. 

So my moment of “Fuck… I have Lupus” was in fact not inwardly directed. The thoughts that followed the statement were flashes of thoughts of the people I love and how this effects them. Like I said earlier, I self inventory regularly not because I want to but because it keeps me grounded. This is the type of moment of grounding I am talking about. It’s easy to get caught up in the pain, anguish, fogginess, and all around world wind that a chronic illness entails.

I took a moment to consider the pain that it causes them or the helplessness that ensues when they are unable to do anything about it. I considered the ramifications of loving me, the constant hospital visits, the constant plan cancellations, and the never ending scheduling conflicts because my full time job of doctors appointments gets in the way. I sulked and held my breath for a moment. My body even betrayed me and allowed my eyes to well up with tears… THEN “”BO-YA” my future self came back in time and slapped me. 

So… Yes I have Lupus, it sucks…. I cancel plans on them, I can be moody, I sometimes have to ask them to repeat themselves because of the “fog” brain, I drop the AC wherever I am because I am always hot from the meds, I may more times than not have a “Snickers commercial” moment when I haven’t eaten, I may exercise and then stop, I may complain sometimes (rare… but it happens), and I may be stubborn beyond belief… BUT THIS IS ME! 

People see me from the outside and think, she is 28 and looks fine. My own family does it!!!! I often realize they forget that Lupus is an around the clock deal. Unfortunately at times it wears on even the strong at heart and my family begrudges me if I don’t rush to clean. This is part of the deal. I always make up for the cancellations and the early to bed missed texts. I make up for the moodiness and the fog brain.  In the end this is ME… Foggy brained, overachiever, stubborn as a mule, FIGHTER, ME… Perfectly, imperfect. 

 

XOXO, 

Perfectly, Imperfect…

 

Undefeated DIVA