Just get some sleep…

Me: “I am Exhausted”

Them: “Get some sleep. Rest. Oh just take a nap.”

If it were only that simple. There is tired and then there is the exhaustion that many of us with a Chronic Illness feel. It is the nausea inducing, body shaking, fever generating, limb weakness type of exhaustion. For me, my exhaustion can sometimes include breathing difficulties and neurological side effects such as dropping things, tripping (body imbalance), and fogginess. It is a concept that is difficult to grasp if one has not experienced it.

Sometimes resting or sleeping do infact help but more often than not it only places a bandaid on the situation. It is like plugging in your cellphone that is at 2% for 10 minutes to get just enough of a charge to make a call. You rest/sleep for 8 hours… and sometimes you have just enough energy to do just one activity. You save up all of your energy for one thing. We are not talking about saving up your energy for one big trip to Disney, no. I am talking about you sleep 8 hours to do something like clean the bathrooms or cook dinner. This is of course if you can get to sleep, as many of us are experiencing side effects from medications or in such pain we can not get comfortable.

I wish I was joking. I wish that everything I was saying was a harsh dramatized dream, but it is not.The last time I was experiencing this level of exhaustion I was being newly diagnosed. I have to admit that I have been very lucky over the years as I have been able to kind of gage when I was exerting myself and I would plan appropriately. I worked full-time, went to school full-time, and maintained some level of friendships. Now that I think about it, I am not sure how I did it… but I did. Now a days I can’t seem to make it until 3pm without needing to nap for just a moment. When I was working in an office, many of times I would take my lunch break and nap in my car.

I have been looking up some different shakes and teas to help with my symptoms. Think I will make one in the morning and see if it helps even a little. I’ll share the process! Stay strong my fellow spoonies. I am with you… Have a good night!

XOXO,

Exhausted Me.

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Spoonies job is never done!

A sick Spoonie? NO! Never!

As I sit in the lounge at work, I find myself sitting doing a breathing treatment. There is no shame in it, but there is without question education to be had or given. The flu is going around the office and to say I work in close quarters is an understatement. So the hacking, nose blowing, and ever so present dropping of staff has begun. I sit in the lounge with the big boss and she watches me as I place all of my equipment on the table. As I start my nebulizer, she excuses herself. Several other staff come in and apologize. I took a moment to explain, there is no shame in it. I have to breathe, this helps me do it. Although there is no doubt that at times we as individuals with chronic illnesses have people in our private space, this is not one of those. Education was without question given.

I am fortunate that I work in an environment that is understanding to difficulties such as mine. Nevertheless, I still sat and wondered what my fellow spoonies go through. I am not naïve, I know I am fortunate. My fellow spoonies, stand up. Let me know is it difficult for you to take care of yourself if needed at work? Are they understanding? Would you feel weird sitting in a lunch room doing a breathing treatment? If you want use the comments section as a sounding board!

If I have learned anything in the last couple of years is that, I have a second family out there. When I am having a bad day I take to my social media and I get all of the support I could possibly imagine. I also provide support to those having a terrible day or moment. If you feel this way, there are people out there….. I’m here! So reach out! Remember our job is NEVER done. Remember that our first priority is to take care of ourselves so we can be around for the long haul but every once in a while we need that push, reminder, filled with love!

So spoonies, unburden yourself. Our job is never done and you have a second family to fall back on!

XOXO,

Undefeated Diva

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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. 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!

My Wrist Bling (Review)!

If I had my way, I’d wear jewelry, a great pair of heels and nothing else.
Jada Pinkett Smith

I love personalization… Anything with my personal touch or something sentimental has my vote!

Today, I received the most beautiful wrist bling. When I was first diagnosed, I felt like I was alone in the world on the never ending roller coaster ride filled of doctors visits and symptoms. The last 3 years have been filled with some of the most amazing moments… Today was one of them.

Last year I joined instagram and it I learned quickly the power of social media. I now never feel alone! I have a family constructed of the most beautiful and caring people in the world. In my lows I have sunshine and support, in my highs I have support and a team that would rival the olympic team.

Now, one of my beautiful Lupus Sisters makes some bling. I have seen so many of my other beautiful family members get her bling. I finally decided to jump in… and I am so excited and happy with the results.

Review:

From the first moment of interaction about the bracelet her customer service was impeccable. Foxxy took her time to explain the process in detail and took the time to ask in depth questions to get the concept of what I was looking to do. She asked questions, made suggestions, and allowed me to make a change before she sent the finished product.

Upon completion, she sent me the tracking information for my bracelets. They arrived so fast that I did not even get to the tracking information! When I opened the package, there was personalization everywhere. The personal touches and customer service were everywhere. When I opened the box, I was blown away. The quality was phenomenal. I initially had fears with the quality of a “stretchy” charm bracelet. I learned immediately that was not the case. Dare I say that my bling was better than the picture proofs she sent. When I put my bling on, the bracelet was heavy. The quality is superb. The color scheme was wonderful! Iw as so very surprised to find extra personal touches I did not see in the proof. There is nothing about the bracelets that don’t scream “I AM AMAZING and was made with love and care”. What I love most about my bling is that it was it is personal to me! It encompasses the essence of Undefeated Diva. (see photos below)

(The gloves signify undefeated)

So I say, if you are looking for impeccable customer service, personalized bling, and quality product made with love… I recommend http://foxxycharms.bigcartel.com.

 

Thank you Foxxy for my beautiful bling. I think I just found a great idea for christmas!

 

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I dare you say something!!!

“Not guilty by reason of Prednisone”
Gorgon

BOOM! You have a flare up, you stub your toe, you have chest pain, body aches. Just pick a complication, because 9 times out of 10 the treatment plan is still the same…Drum roll please….. STEROIDS… Most often Prednisone, but steroids come in several shapes and dosages.

You get sent home and reap the reprucussions of the side effects, of a medicine that is keeping you alive. The list of side effects to steroids is endless, but for me I cringe at the thought of the wrath. The silent hunger that creeps up on you and wakes you out of a dead sleep (when/if you can actually obtain it). A hunger that claws at your insides like you have not eaten in days… When honestly it has only been 2 hours! This of course is only one of many side effects. For me, a short fuse would not begin to describe the C4 loaded box in my chest. I know it’s there, I know why I am emotional, but hell if I can control the explosion once it is ignited; most often over nothing… *BOOM*

Then as the dust settles, if you are any type of human being you assess the casualties. Often times leaving in it’s wake it’s share of emotional hurt or pain. I am not saying this is right, but at least I am human enough to admit the truth. This is the problem ladies and gentlemen, often times people say they are being “real” when in all honesty it is the “real” they want to portray. Well, me, I am here to give it to you straight. If you don’t like it, well thats okay. I would be doing everyone an injustice if I sugarcoated even a word in my blogs. The down and dirty, good/bad/and sometimes ugly truth, SHIT HAPPENS and chronic illness SUCKS…

So to make me happy… Tonight as I wrote this up, I partook in a mini fiesta in my kitchen! I’ll give it to you guys, it did in fact look like I was hiding something; As I stood in the corner of my kitchen with only the light from my iPhone flashlight, going to TOWN on some amazing chips and dips… I laughed, because I sure as hell had NO SHAME! I had ignored the hunger for so long that the hunger pains actually ensued. My stomach started cramping up and the nausea kicked into hyperdrive… SO I had a choice… Eat the chocolates in my nightstand (resealable bag!) or get up and grab something more.

I will admit, I was craving the ultimate Philly Cheesesteak at that moment. In the end, I ended up with my small little fiesta and boy it was a party in my mouth! My fellow spoonies out there know what I am talking about. The first bite of whatever meal or snack you have when your on steroids is like nirvana. You could be eating a damn burnt hot dog and it tastes like the best meal in the world! My chips and dip did just that. The first bite of my chip, I threw my head back and “mmmm”. It sounds insane, because frankly it is. How could a medicine that is supposed to help you stay alive wreak so much havoc on you. Haven’t you been through enough? I mean for heaven sake you are on the medicine because you are not well.

 

NEVERTHELESS… Exhibit A below is a picture of my 12:17am fiesta! It hit the spot so well, I am thinking I may actually get some sleep tonight! SO, to my fellow spoonies out there suffering from midnight, midday, mid-second hunger/craving pains… I’VE GOT YO BACK! Ain’t No Shame In My Game! Eat, not to the point of being sick… but eat. I snack regularly, I eat fruits for snacks such as bananas (to keep the Potassium balances (Yet another problem from steroids)). I also get the 100 cal snack packs and although I may eat more than one, it is better then eating a damn Philly at 3 am!

In the end, I dare someone say something to me. I almost beg for someone to say something because I would use the opportunity to ask this…

What would you do if the medicine that was supposed to save your life, is also killing you slowly?

(YOU EAT CHIPS AND DIPS! BOOM)

🙂 Good Night and sweet dreams!

 

XOXO,

ME!

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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

An original made out of anger!

I present to you…. My future t-shirt for Team Undefeated Divas!

I have decided to trademark it for the future use of Lupus Awareness!

I present… AINT NOBODY GOT SPOONS FOR THAT!

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Have to admit, this hysterical creation was manifested out of a heated moment. I was feeling very overwhelmed by what I call a “lupus moment” and I yelled…. Shut up, AIN’T NO BODY GOT SPOONS FOR THAT RIGHT NOW!!!! In the moment I was angry and very serious… but all it took was 30 seconds to realize what I said and burst out in immense laughter.

It seems that all of my best creations are created out of madness :). So here you go.

Xoxo,
Undefeated Diva

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!

Need your help!

I am in the home stretch of my senior year in college and part of that consists of doing a major research project. I need a sample of 100 people to take this survey. The survey is 4 questions and is CONFIDENTIAL!

** For the sake of the validity of my research, I can not discuss my findings or the hypothesis at this time. **

If you have just a moment your participations is truly appreciated!

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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