Thursday, October 17, 2019

Blame it on the FAME

I met him as a child

I remember the mustache and his name

He played more of a part in my life than he could imagine

He never knew my name 

Or probably would remember my face

But he was a bigger part of my life through all ages

Mama turned on the old LP and all the troubles disappeared in the night

In that moment it was all right

I danced around like there were no worries or pain

I never knew who to blame 

Blame it on FAME

Few times i felt love and a tender touch

The radio station tuned in

I couldn’t help but grin

We danced lost in each others eyes

We shared each others heart

For a moment there was no pain

I never knew who to blame

I blame it on THE FAME

Each time I lose someone close 

I lose my hard exterior

For a moment there is no shame in shedding tears

Missing their face

Everytime I think of them 

That song plays in my head 

Everytime I hear your name and start to dance

I don’t know who to blame

I blame it on the FAME

Watching my kids grow

I have no more babies 

They grew and left my side 

But everytime I hear that song it warms my soul

Fills my heart

And oh I love this part

It brings me joy and such pain

I never knew who to blame

Oh yes I blame it in the FAME

I was so scared to give any man a chance 

To break my heart again 

But I’m so glad that I let him come over

Standing there helpless that song played I fell in love for the last time

We danced and I knew he was not playing games 

My life has never been the same 

I know who to blame

I blame it on the FAME

When feelings of blue cloud my day

I turned to the only medicine that makes me sane

I go to the jukebox

And hit play

All the worries fade away 

That’s the joy to which has a name 

The name it carries is FAME

I can’t resist you 

Even though your hazardous to my heart

Like poison to my veins

My body and soul you drain

Your kiss is toxic 

And leaves me helpless

But I come back time after time for more

Until I’m dead on the floor

I knkw your love is deadly for my heart

But I allow you to continue to tear it apart

Breaking me down 

Helpless I lay in your arms 

Heart breaking head spinning 

But I can’t help myself at all 

There's a void in my heart 

A space in my soul

There's a place I've never known 

No place to call my own 

I've had it all

And I've had nothing

No food and no shelter 

But that's not what noones shown

It's love I've never known

I've known one night stands

I've known drunk skin on skin

I've known dining and the wine

But never had love that was mine 

I want that in my life

I want to be more than his one night

I want a man to love me right

I want a love to call my own

I had men to call my phone 

Want my love and my kiss

But there is still something missing 

They come around and buy me things

Fall for me and buy me rings

I even said yes a time or two 

But what's missing for me is you

She Had to Go

There was nothing left for her here

When she's gone don't shed a tear

No crying 

No pain

Just rejoice that never again

Will she hurt

Don't hate her because she had to go

Just in your heart know 

It was not you

It was not what you didn't do

It's not what you didn't say

That caused her not to stay

The demons that haunt her

The pain In her heart

Was more than you could ever repair

This world was more than she could bare

The past ripped her open like a knife 

That's why she left this life

Rest easy now and know

Love is something she had never known

Something she never learned to show 

Life made her hard and strong 

And that's why she chose to screw things up and be alone

She couldn't ever love you 

Or anyone else

Because she never learned to love herself 

Wednesday, August 29, 2018

2 Steps Forward and 10 Steps Back

     I have often blogged about the daily struggles of Narcolepsy with 
Cataplexy (NWC) and Multiple Sclerosis (MS).  I am a strong individual and often make the comment that MS does not quit so I opted to quit MS.  The truth of the matter is neither of these incurable illnesses quit and there truly is not an option to "quit" them.  I often say if I had a choice I would choose to completely rid myself of the toxic neurological disease of Narcolepsy.  However, as of lately, I am unsure I still feel the same way.  MS is definitely like my fellow MSers refer to as the MonSter.  It literally has taken what I have built up of my life since 2012 and completely torn it down in a matter of 3 days.  Once again it rears it's nasty little head as if just to make sure I remember that it is the more powerful between the two of us.
     First, just a peek into my life.  Somedays I get up and stretch, other than a severe muscle cramp in my calves and the arches of my feet, occasionally in my quads or thighs, sometimes in my seems as thought my body is completely going to cooperate today.  As I get off the bed and step.....OUCH, pins and needles that I have to just endure and walk on to the bathroom or stand still for a brief moment until it passes.  Sometimes it passes quickly and other times I have to endure it and walk on before I piss myself.  I am sure I look pretty silly stepping to the bathroom as though I am stepping over hot coals when there is nothing there.  But its a fact that I cannot control my gait any better than some of my patients that come in our office that have just started to walk.  Then as I get to the toilet just before having an accident on myself.....i feel as though I cannot pee, then it starts and then I cannot stop it and it goes on and though I want to sit on the toilet until my legs fall asleep, again complicating my morning.  Now it is coffee time.  Jon usually fixes my coffee but he works long hours and most days he is gone long before I get up.  So I am off to make my own coffee.  Carrying it to the bathroom to get ready for work is a skill I have mastered after many spills and self inflicted burns.  As I manage to get to the bathroom in one piece I start the shower.  Most times I forget to turn on the hot or cold water and stepping into a scalding hot shower or ice cold pretty much feels the same at first until my body recognizes the difference, after I have either burned or frozen myself.  I cuss, laugh, then want to cry but go on......I wash my hair, which by the time I rinse my shampoo out my arms are so tired and I am so short of breath I want to stop but I have to finish.  I finish rinsing my hair then wash my body and by the time I rinse, Shaving is no longer an option.  My arms and hands have had enough and I am exhausted. Sounds sill doesn't it?? Well I feel silly and weak writing this but also find such comfort in admitting the defeat I feel daily.  So after drying off its time to recooperate and recharge my batteries so I can put makeup on and fix my hair.  Somedays only one of these are possible.  It has been several weeks since I fixed my hair and worn makeup on the same day.  After living with the 2 demons daily I have learned that I have to let some things go and choose wisely so I am not low on "spoon" count before my day even starts.  Now I can get dressed and after trying to rack my brain to remember which day it is and what color scrubs to wear......I choose.  (I normally prevent this flustering moment by putting my daily work scrubs in order from M-T with the correct color on each day.  After tripping a couple of times and a few blurted dirty words I manage to get ready to go.  I manage to tie my shoes or have someone else to do it some days :( Then off to take the girls to school.  Some days the oldest drives to preserve a little more energy and focus.  Somedays I take a wrong turn or go the way I went to my old job but quickly straighten out and head to work.  Keep in mind I am exhausted before I walk in.  When I walk in the door I am proud to be able to work but also dreading trying to not only work, which is tiring, but keep all my glitches on the DL.  I smile and laugh alot to hide my pain or embarassment, talk alot to stay alert and focused, and move alot to prevent pain and numbness.  I am exhausted already and want to rest so bad It brings me to tears.  Then I remember I am the one who woke up from a coma and went to work four short months later.  I dig in and remember that I am fortunate to have my job and have the privilege to make a difference in so many lives daily.  So I suck it up and get busy.  Some days I am on target and work circles around myself.  Other days no matter how hard I try.......I cannot keep up or get things going in a smooth manner.  Everything I touch turns shitty.  Then I have to have a bathroom break and revamp, remember that it is not okay to give up or to cry.  Then I get back at it.
     This has not been the case this week.  I lost it this week.  I have worked and pushed myself to the point of exhaustion before and dearly paid.  Once nearly losing my life, once nearly costing someone theirs and nearly losing my RN license.  So after having two days of cataplexy attacks, which should not be happening and frustrates me to no end, and drifting during traffic stopping, i made a choice to stay home after lunch.  I cant risk anything happening because my brain and body made a choice to completely shut down and quit on me :(  It frustrates me so much because I have never quit on my body not once but it wants to quit on my almost daily.  So I have no enjoyment, I hate summer and can barely leave my house due to heat intolerence, but now this stupid illness is trying to rob me of my work ethic also.  There have been several days I have done the ultimate NO NO in by book.  I broke down and cried at work.  It just breaks my heart that I am no longer able to push my body to keep going.  You know the saying The Mind says Go when the body says NO.  This is not the case for me lately.  When my body or mind says no that is it......that is the final answer, NO.  
     Needless to say, I have lived with one disease most of my life, the other, probably longer than I have had a diagnosis.  I have learned to live with them and know what to do to over come obstacles related to memory and physical impairment.  However, I have learned this week to listen to my body and when it says to take a break, I need to listen and abide.  Because my body will not give me any other choice eventually.  It discourages me so much.  So much that sometimes I can do nothing but cry, which helps nothing.  I fought so hard to get back where I am with full time employment, fighting illness one day at a time, and my licenses in good standing where they should have always been.......2 steps forward, now my disease once again, set me 10 steps back.  The state deems me able to work and not draw disability but where is a job who allows the rest periods and days off when my illness waxes and wanes.  No one running a business can abide to such.  So like I said I have went 2 steps forward and 10 steps back.  Now to punt again and get back in the game.  As soon as this body allows me to walk vertical and push on. Maybe tomorrow I will get ahead 3 or 4 steps before being pushed back to the point of starting again.  
    Usually I have a more positive outlook but today I am thinking how fortunate I am to have not one but two rare diseases.....however at least after a year of misdiagnosis of Lupus at least I have peace Knowing what my diagnosis is but that is just the beginning.  
    Enjoy the video......Rob Thomas wrote this for his wife who suffers from autoimmune disease......the video is very close to how it feels to suffer from MS.


Tuesday, July 4, 2017

What I Learned From a Child

Not long ago I had the pleasure of meeting a little boy at the young age of 6.  Upon meeting him I knew I loved his father with everything in me and I'd hoped I could teach him things that I have taught my own four children.  Things about having fun, living outside the box, and just things about life, lord knows I have lived through obstacles and have steered my own kids away from my experience of finding things out the hard way. Little did I know he would teach me things.  This little boy has a condition known as Autism.  While spending time with this little boy I noticed he was beyond intelligent and lived in his own little world. A world I was somewhat intrigued by and curious about and jealous and envious of at the same time. While spending time with this young Boy and paying attention in great depth I acquired knowledge I feel no one else could have taught me.  This child taught me something entirely like no one is watching.  I find myself dancing around and laughing in public, regardless of where we are, which is totally refreshing!  He taught me to view the smallest things as a blessing and as exciting.  Things most take for granted he becomes ecstatic about doing them.  He taught me to show enthusiasm while going through life with those I love most.  This would show them how much I cherish every second with them and that the smallest of things are priceless while by their side.  Something that makes me feel absolutely wonderful is how everytime I walk through the door whether it be hours, minutes, or seconds later he makes me feel like he is so glad to see me and to hug me.  Imagine if we treated everyone we love this way. Imagine how we all would know our worth.  I'm so thankful to have met this child. To now be able to start training myself to brush off the small things and move right along. Go ahead and March to the beat of my own drum regardless who else can hear it. To smile and have fun no matter how little the activity or without even leaving home. Embrace the love of those I hold dear and show them always how excited I am to have them in my life everyday. I truly believe that God has used this condition to teach us to not be selfish and to give, laugh, love, and enjoy life. For we only have one. I'm so thankful for his dad, whom I love with all my heart and soul. But not only for his dad but thankful for his beautiful mother as well. For all she does and all she has instilled in his beautiful soul as well. Thankyou both of you for allowing me to have the pleasure of being a part of his life. I am learning everyday from him and hope I can teach him things along the way. Thankyou 

Saturday, April 29, 2017

For Jon

The colors fade to black and white
I prefer alone 
peace and quiet
Unsure of what became of my smile
for i haven't seen it in quiet awhile 

i love unconditional and deep 
not the quitting kind
but never have i been loved the same
to my heart a man has not been kind

as i hit my knees with tears filling my hazel eyes
i prayed please send me a man who tries
to make me never lose my smile
one who appreciates that i go the extra mile
i don't need money or material possessions 
just someone who makes loving me his obsession
one who stands in front but only to guide me
to protect me
not to lead me nor berate me
i cried and prayed for the man of my dreams to come true
dear lord to love me as i need him to
i was weak and broken and i hear the lord say
get up my child he will come one day
please be patient for your kind heart will see 
it will be paid back for how you have loved me
i found my strength again and dusted off my knees and looked up as i dried my tears and say thankyou for your ear
i know he exists i've always known he is near 
and one day will come and i will cry no more tears 

just as the promise was told 
i sent a message to a friend of old
we chatted and never thought much
of befriending one another again 
reunited as the friends we once were 
and talked of all we had suffered and endured 
then he insisted we go for a drive 
that i should get out for a short time

we rode for miles and talked the whole way
there was not a moment we didn't smile or laugh that day
as we walked that evening by the water 
i couldn't help but wonder
what was the feeling i had felt
wanting him to just take my hand
why would i think that
why would it cross my mind
with things i had been through time after time
denna what a silly stupid girl you are to want to go through the heart being scarred 
 silly girl are you sure 
to have a man once again treat you as though your
nothing and don't matter to leave you alone 
bruised and broken doesn't refer only to bones
remember the pain you have been through and don't be the stupid romantic you are
hush the voice of reason in my mind 
i prayed for him and i am unsure how i know this time but he's the one i been waiting for my whole life 
the one who needs me as much as i need him this time it's right 

i played all the possible taboo through my head and the answer i got was said
he is not the same and i know this to be true that he don't lie and is a gentle soul and would not put his hands on you 
i fought the urge to hold his hand or look in his eyes and it happened anyway to my surprise
our hands met together at the same time and when i glanced over at him his eyes met mine
i shivered and my heart beat fast 
and my tummy quivered 
as we walked holding hands that day by the river 

today my life is perfect never mistake 
when the lord says he will send your heart to you he will not forsake
i'm finally whole and all the love songs make sense 
now that i have him in my life my heart has been rinsed
of all the battered bruises and voids left open like a door 
with one touch i knew this was the love that i had prayed for 

he is gentle and kind but strong like a soldier
loving me kind, fighting for my love
he makes me smile and nourishes my soul and everyday my love for him grows
bigger and better and will be bigger than life
one day i will be honored to be his wife 
i said never again but today i must say
i will wear his name with honor until the day 
i am laid to rest and leave this world
i just hope i love him enough and he feels adored 
to know what he has done and the new life he breathed within me 
the heart he rebuilt and how he made me love living again
how he took my broken soul and restored my faith in men
he loves me like no other has ever in my time
i promised him i may not love him the rest of his life 
but i will love him the rest of mine