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)

ūüôā 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

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!

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