#sweet dreams & beautiful nightmares

blue_moon_by_chasing_dreams_350another week and weekend has come to an end…I can’t believe we are already half way through month one of 2013…for me, all the days and weeks kind of blur together…especially with me being home bound the majority of the time…I’ll keep this post positive even though my body isn’t feeling so…grateful that the sun made a return and that I was able to get out the house a few times this weekend…thankful for the roof over my head, my heat and hot water, and the ability to breathe…I hope every has a safe night, with peaceful dreams, and maybe a beautiful nightmare or (two)…praying for joy in the morning and no weeping for tonight….you (we) are more blessed than we know…goodnight #stay triumphant

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#don’t count me out

Happy Tuesday! I spent the majority of today in bed…caught up with a friend…got a walk in…took a nap…rest…cleaned…overall it was an OK day….my evening turned out better than my morning…I was able to cook a nice (albeit late) meal…2nd week of this most recent flare..the cold, grey, and cloudy skies do nothing for my muscles or joints…even still I was happy to be able to push through the fog and get a walk in..I always feel so powerful when I power walk….I feel one step closer to the runner that I used to be…boy were those good times….one day I will run again…not today, not tomorrow, but one day….meanwhile I will be grateful that I have two working legs that I can move most of the time and they allow me to walk….how was your day??…keep your positive vibes flowing…count your blessings…and be grateful for what you can do…not on what you can’t….when you can do DO and when you can’t DON’T….it is OK to say NO…don’t let anyone tell you otherwise….and don’t let yourself feel guilty about it…so often we are our own worst critic…..but enough of my rambling….hoping for a better Wednesday…and praying for all those undergoing hardships…keep the faith…#stay triumphant #goodnight

On my Ipod: Fly

I came to win, to fight, to conquer to thrive…I came to to win, to survive, to prosper to rise…to FLY...these lyrics really sum up my thoughts and feelings at this very moment… every time I overcome a hurdle…push through the fatigue and fog… for the all times when I take three steps forward then get pushed five steps back…to the doctors who tell me it is all in my bed….when I know better that it’s not…for living in this skin and fighting this monster day after day…for the times when I give in to the pain…but never give up on the fight…for the small accomplishments that seem so insignificant to you… but are small victories for me…for remembering that I’m not a failure until I quit……I will win, I will survive…. I WILL FLY... #get ready for it

Fly by Nicki Minaj

#sabbath day

on this seventh Sabbath day

cold and lonely just like Saturday

mood ring colors, vacillate

purple hues envelope me

a little magenta

a dash of grey

no blue hues on my palette of paint

not red with anger

not filled with hate

not green with envy

or yellow fears do I demonstrate

won’t fall prey to the black ice paint

no sorrow or mourning

no heartache

no, I’ll stay magenta

I’ll bear this weight

I’ll paint the pain away

on this Sabbath day

#the new normal

As I brushed my teeth this morning looking at my reflection in the mirror something felt different…at first I couldn’t pinpoint what it was….suddenly it hit me…I was completely pain free and for those few moments I actually felt like the man I used to be….could it be?… a sudden rush of euphoria flooded my being…today was going to be a great day!…unfortunately my euphoria was short lived…after my shower..getting dressed and sitting in the car..the normal fatigue, pain, searing, overactive nerves..yawning, and ache…came flooding back…I am grateful to have had a sliver of hope in those 45 minutes…faith that somehow, some way I will feel like I used to one day…maybe I’m naive…maybe I need to work on accepting my condition as it stands like my psychologist is trying to help me to do…be secure in the discomfort and allow it to have a place in my mind, soul, and body..maybe I am delusional…one thing I know for sure is this disease is real…it is real and it is complicated, conflicting, misunderstood, contradictory, senseless, surreal, and insidious…but these feelings, this pain, the emotional and physical affects are real and as I sat driving, I let out a sigh as I have many times before and I thought to myself…this is my new normal….
that small window, that silver lining was enough for me  to keep enduring, keep persevering, keep researching, keep raising awareness, keep writing, and keep hope alive…no matter what, no matter how crazy or delusional or naive I may be, I will never lose faith that somehow, someday I will be cured…#happy Saturday, #stay triumphant

#fire wednesday

wrenching, firing, pulsating ,inflamed, heated, lava like nerve pain pulsating throughout my whole entire body…like frost bite nipping and chipping away at my soul and psyche… trying to push through it and get a little freelance work done..another grey, muddy colored day…thankful for another day of life… hopefully you are all doing well, remember weeping may endure for today..hoping for joy and sunshine tomorrow #stay triumphant