September 10, 2010

Pain...To Share? Or Not to Share?

...It has come to my attention that I have not once truly shared my pain with you. I have done my best to create place of light, happiness despite the darkness of lupus. Which most of us know can get pretty darn dark! I here on vow to share it ALL, dilute none, my laughs, giggles, leaps, but also my tears, breakdowns, struggles, PAIN.

I am learning that it is okay to share my pain of living with lupus, so long as not to dwell on it with negativity. Our pain makes us stronger, thicker, with each step we take. I'm going to share one of my dark days with you. You are NOT alone in your moments of darkness, many of us feel similar pangs. 

I am going to bleed my pain onto paper for you lovies. Hold my hand as I hold yours. <3

*This poem of sorts was provoked by too many hours of being left alone one day. We all have our moments when we feel alone. We can be completely surrounded by friends/family, and yet the littlest thing can throw us off balance and make us feel as if we are forgotten or unwanted. We KNOW this to be untrue, but cannot help our emotions which are triggered by lupus and sometimes our medications. This poem was inspired by a fellow lupie of mine @DrSnit who always speaks honestly about her life with chronic pain. Teaching me that it is okay to express my pain in order to heal from it and help others heal as well. Love you Snitty <3 *

Pain Bled Unto Paper

...Pain, frustration, tears. Does it end?
I look around and feel alone.
No one to hold me, remind me its okay, that i'm safe.
That the pain will pass.
Seconds tick, minutes tock, hours form days that dig ditches of emptyness.

My mind is in constant turmoil, I can no longer understand my thoughts.
Are they even my own? What the FCUK am I feeling!?
My thoughts feel tarnished by prednisone, polluted by methotrexate,
and influenced by lupus.

I feel helpless, dependent on others. Where is my backbone?
Where is the 'me' BEFORE the diagnosis?

Each pill I swallow rips a piece, poisons a part of me.
Why can't I remember a day once its passed? Why is
it so hard to recall my favorite memories, where has it all gone?

Then there is the truth; I have become a burden.
How long will it last? When will they tire of me?
Are the smiles even real, I want to know their true thoughts.
They say it doesn't matter how long a person has been a friend,
that it only matters that they never leave, that thats how you know
a true friend...

Yes, I've lost some from the very beginning. But how long will the
rest last? It's only been eight months and I'm overwhelmed myself!

I cannot even fathom living entire YEARS like this. Constantly feeling
like a burden to everyone I cross paths with. None but my lupies can
truly feel me, know, understand my pain in all its complexity.

My thoughts are NOT my own.
I want to remember, but I forget.
Happiness? Yes, that! Where is it?

What does a lupie have to do to receive such a blessing?
Where art thou happiness?

Then comes anger. How can anyone disregard lupus? Or dismiss it
as something that isn't serious? Are you so ignorant that you won't educate yourself?

For an entire MONTH I could NOT walk.
I could not move an inch without feeling as if my mind would shatter
from the pain. My tears were endless. I had become an invalid. Incapable
of doing for myself. I could not get to the bathroom, let alone use it without help.
How many hours I weeped because someone had forgotten I hadn't eaten lunch;
or that I had not yet been taken to the bathroom...


NO ONE can tell me lupus isn't real, or that something i'm feeling isn't happening.
That a symptom i'm experiencing isn't from lupus.
I can't even begin to eununciate exactly how I feel, pain, frustration, stress.
Over a disease that has NO CURE, doctors have NO idea where it even comes from.
& I have to figure out how to live WITH it.

To paste a smile on my face so that all the "normal healthy" people can feel comfortable
around the "sick girl". I alone have to find the strength each day to be happy despite my feelings of darkness.

and secretly, after hours of attempting sleep. right before my lids finally close I wish for it all to end.

I'm tired. Tired of trying to be strong. I don't have endless strength.
I want to fade into the darkness, release you from my burden. Release me.

Is there no onewho can make me a promise?
Promise, to never let go, to hold on when I want to give up.
To wipe my tears when I can't keep them in. To never leave
me alone in the darkness. Ever.

...I didn't think so.

Even amongst the darkness there can be light, hold my hand lovies & lets face it together. Sharing our pain may not be easy but it is necessary in order to heal. <3 Stay Strong, we may stumble, shed tears, but we must NEVER give in! 



  1. I feel like crying! I've been where you are. Some things I can still relate to right to this moment. It's hard to become a dependent when you're used to being independent. This is just a painful phase that you are going through. Maybe you should speak with a phychologist to help you cope. I found speaking with a "professional listener" was helpful to me when I began to feel down and out. It's hard to cope with the changes that affect our bodies and mind (without our permission.) Continue to share your thoughts in words, that is a coping mechanism, just to express yourself. I don't know you, per se, but I do care about you, because I've been there and it's not fun. Please take care and try not to stay down too long. Don't let the darkness own you, you're too beautiful, and have more work to do spreading the word about LUPUS and other Invisible Diseases. I love you!

  2. Awww Dawn *hugs*! Thank you so much <3
    Your words have touched me in ways unimaginable!
    I truly feel that in order to heal we must share our pain, our dark side with lupus. & also let others know what we're going through, so they can have insight on what our lives are like and how to treat a person who has an invisible illness. *kisses* I Love you too!

  3. I been exactly in your shoes as lupus i also have :-(


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