This Is My Life

.     I have sat up alone until 2-3:00am several days this week.  In the hours I have sat and played games on my cell phone or researched the best alternative methods for relieving symptoms of each of my illnesses, I have also thought about my life and questioned myself.  What have you done with your life?  Did it matter to anyone and have you made a difference?  Has it been enough? I have never felt like no matter how many jobs I have held down at once, how many kids I have reared, nor how awesome they all are, I have always felt the need to do more or accomplish more. Now that I have let MS and Narcolepsy get the best of me lately and I no longer get to do hospice for a living, I sit and ponder on my life.  From the start of struggle to now.
     First of all I was a teen mom.  It was not glorified then.  There was no cover of a magazine or TV show.  Those shows seem to make the Teenage mom look both harder and easier than it really is.  I wrote Memoirs of a Single Mother over the years and hopefully one day I will publish it or get the nerve to share it so that people can understand what it is really like.  Not how Hollywood makes it look.  I remember sitting alone at night and pregnant and only 16.  I was alone, except for my parents and brother, scared to death, excited, and full of guilt for being excited.  I was humiliated and embarassed and full of guilt for allowing myself to feel such, because I am strong, a leader not a follower, and I am myself and have never tried to be anything except that.  I also was angry.  Angry because I gave in and made a choice about something I knew very little about.  Angry because I always "mothered" alot of my friends and also had done very little compared to some of them.  However, my mistakes were MINE.  Not my friends or my parents.  I look back and I am very proud of the type parent I was to him.  And to hear some of the heart felt things my baby boy, now 24 years old, says to me more than confirms it.  However it was difficult.  Such a young age to be worried about dating to find someone to accept he and I as an instant made family, to worry about dating different guys until I found the right one and confusing my son.  Despite my careful efforts and choosing to stay with the one I was dating because in a blink of an eye a year had passed, then two, that I invested in that relationship.  Despite my efforts to make his life the best I could as a single mother, I married, had a child then it ended in divorce.  Despite my efforts to shield, NOW two boys, I failed myself again.  Many nights of bars with my girlfriends, dating, and just loving enjoyable days with my kids, movie nights and baseball games etc, many lonely nights consumed me.  I don't know why I am cursed with the burning desire to be loved, accepted for my good as well as my bad, and having a soulmate to catch me when I fall and pick me up and brush me off, someone to share my happiness and sorrows with.  BUT I am cursed with such.  I again married and to no avail somehow I failed again, of course not by myself, but another failed relationship and two little girls later, I was a single mother again.  Full of guilt and a heavy heart.  Guilty of what?  Again in my life I just accept what life hands me and roll with the punches.  VERY shortly later I ran into my TRUE soulmate.  First thing I thought was "Denna don't rush, don't think so much either, just Let It Be.  Come What May.  After a few short months of dating my life changed forever.  A near fatal car accident that almost cost me my life.  Months of rehab and pain that I hope to never experience again, I was myself again.  Well so I thought.  That accident changed my life and affects it every day.  On a brighter note, that wonderful guy I met and dated stood by me through my coma and rehab.  Tucked me in bed.  He and my mother and father and step mom took very good care of me.  Later I became the luckiest woman alive and became that fella's wife :)) For the first time, whether it was me, my being more mature, or the fact I FINALLY got it right, I was happier than I could ever remember.  To my suprise again I found a way to allow someone to fall out of love.  I have never in my life hurt so bad.  I finally understood what it meant when they call it heartbreak.  That feeling of not wanting to pull out of your own driveway but Noone asking you not to go and allowing you to do so felt like a dagger.  Again my kids became my strength and this time I could not find the strength to me so strong and so resilient.  I crumbled.  For the firs time in my life I could not say I am bruised not broken.  I was completely broken.  I have a reputation.  One of being so strong that it is envious to others.  One of coming out of everything unscathed.  One of rising above it all.  A Phoenix.  I put that face on and tried my hardest to turn my pain into anger like I have always done.  I was angry.  I was hurt and mad as hell but other than through using a forked tongue and saying I was mad and not showing my hurt to just anyone, I was dead inside.  I literally wanted to die.  I feel so guilty to this day because for the very first time in my life I could not look at my kids or my parents and say that anyone was enough to pull me out of the dark place I was in.  As if things were not bad enough, struggling with Narcolepsy with Cataplexy, Nightmares nightly, being exhausted, being a single mom of four, losing control of my house because I truly did not care anymore, I got the news.  I got the diagnosis of an incurable disease.  My mom lives away and I am a daddy's girl too but outside of the parental support, I was alone.  Alone to figure out what was going on and what direction to take.  THEN BAM my life stopped and changed forever.  I had a wreck while at work and after another restless night and a night of being on call.  I have not spoke much about it.  But from what I am told if I want to make a difference I have to be honest.  I also find that the best writing comes from true self honesty and openess. I was guilty of two missed calls previously while on call.  Both close to 5am which is the time me, like most Narcoleptics, actually gets to a comfortable rest.  I was told that I would be terminated if I missed another call.  Therefore I slept in scrubs, shoes on, one foot on the floor.  I didn't miss a call but what occured cost me much more than a job I could have replaced.  If you know anything about Narcolepsy or Multiple Sclerosis you know that stress is the WORST thing ever.  I also had an extremely low sodium level at the time which added to disorientation and confusion.  I think I was beyond tired, drained emotionally and physically.  I had already told my boss via text message, after the second write up, that I needed to seek other employment because I could not do on call and have to be at work the next day any longer.  I was not accommodated and that is history.  BUT I have never taken care of myself and have always put myself second, well fifth behind my children and spouse.  Now alone with my kids I was STILL doing this. I found how that I need to take care of myself a little too late.  I had the wreck and due to be emotionless (so the police say) the cop decided to give a little balance test.  Anyone that knows me knows what a difficult task this is somedays.  This particular week was really bad and now I know due to stress of heartache, over worked, stress of single mother life, stress of new diagnosis, and stress of losing my insurance right after diagnosis of one of the most expensive illnesses to treat, and stress of doing my damnest to find direction.  I was wandering around aimlessly without being a wife and mom and working myself to death.  I had lost my way.  I went to jail for the first time in my life. At the end of the day I was ANGRY, sad, confused, and numb.  I called my first person, the one I always want to tell things to FIRST.  Good, Bad, and the Ugly.  We both cried.  To this day I have no clue WHY it happened or How.  I have YET to have an explanation.  My doctor has several good theories but still not an understanding of how and why I was in such a catatonic state and how a medication that had been filled once in a year and used two days prior had such a profound affect on me.  I guess I will never know.  Any damages done I am sure do not compare, but, I spent a year ripped down emotionally, physically, financially, and my self worth, reputation, and work reputation completely demolished.  I still struggled daily and cried daily.  I ended up losing my job followed closely by my house and car.  I am so thankful to have saved a TINY bit for a rainy day.  Needless to say it ran out very quickly.  Never in my life would anyone have ever thought, especially me who has NEVER returned home since I left at 20, and never drained my parents financially or used them for baby sitters constantly, would be without anything and unable to help myself.  I was broke, homeless, had no car, no job, no health, no insurnace for me and my kids, and noone to suffer with.  Truly my lowest point in my life.  Yet still I would trade places with the other party involved.  I would.  My heart breaks because of not being able to see, talk to, or help someone else.  My day will come, hopefully.  But after all the suffering, little did I realize my pain and anguish and worry with not only my legal issues, but my illness had just begun.  For an entire year I waited daily.  Everyday to hear from a lawyer, DA, Opposing lawyer, bill collector, doctor, or to recieve supoenas, court notifications etc.  It was not until an entire year later I was told to come to court and give a guilty plea to be done with everything.  That was one of the hardest things I have EVER done in my life was saying I was guilty of something I was not.  I was but was not, not intentionally.  However, I was so thankful to be done, guilty or not the end of it and not waiting daily for another moment and no threats of going to prison for being sick , I will take it.  Then came weeks of enduring things ordered by the court system that should have been behind me at that point, a year ago.  Now after a loss of a total of about $155,000 which includes court fees, fines, my dad's loss of bail money which was posted at $50,000, a lawyer fee of $20,000, loss of yearly income etc. There was 6 months of probation which cost monthly, color code, which cost monthly.  I have it behind me but I am still haunted and troubled deeply from it all.  The two main things was nothing to do with money. It was complete loss of self dignity, heart ache of anyone ever questioning my innocence, my loss of my work ethic and work reputation, my life as a hospice provider, and the embarassment my kids must have faced.  The friends it cost them whose parents would not let them come over due to newspaper publicity and incrimination.  Here's to you to all those "so called Christians" haha We obviously are reading two different Bibles.  Now, I have no job, feel like a failure with no purpose in life, and I have gained weight and feel terribly unattractive.  BUT I am happier than I have been in about three years.  I have everything I need.  I have my soulmate back in my life, my kids are all happy and excel.  I have my parents and wonderful step parents and a good, boring and not purpose driven, but good life.  I hate myself for not being able to contribute right now but my big guy loves having me at home and if that is what he wants then that's OK with me.  He always says to enjoy being able to stay home and be a mom for once.  It is very hard because I have been that mommy but also always made good money as an RN and made my own way.  BUT we are happy and my heart is whole.  I truly could not ask for more.  Well one thing........I do want to help raise awareness especially about narcolepsy.  I read a book that helped me more than I can explain.  Julie Flygare's "Wide Awake and Dreaming" and she also published a poem i wrote about my tormenting dreams to her website. JulieFlygare.com.  She emails me or comments on fb about certain things and she has no clue how inspired she makes me.  In days following hearing from her I am right there about to  become the Phoenix i once was :)) I emailed the Ellen show today and told her Julie is my hero.  Asked her to read Julie's book and to look at her website.  I included that all I was asking was for Ellen to look at my blog and to look at Julie's book and website.  And I included how I would like to meet Julie in person.  I hope that one day I reach someone and inspire them like she does me whether I do write a book, or it is through my poems, or possibly this blog.  I do not think I will ever get a book published because the Real story about struggles of being a teen mom is not near as intriguing as drama and MTV SO, maybe I will eventually get more followers and somewhere some girl that is NOT your average girl next door, although she appears to be, will look forward to my blogs to inspire her and make her hopeful.

Right There In That Time

Her body was healthy, solid
As any woman could be
That was not the problem you see

It was a disease that stole her mind
Erasing her memory and stopped life
Right there in that time

She recognized only faces
of love so strong
Nothing could rob her of that love which
she had felt for so long

The look in her eyes each time I saw her face
Said "I am lost and alone and I do not know this place"
"I am feeble and weak and want to go home
But I know nothing but these people that I cannot leave alone"

The look in her eyes
when she was in fear merely from me trying to care for her
brought me to tears

But all my hurt and pain
as if her entire world was filled with rain
disappeared in an instant
when that shine in her eyes appeared
when a certain man appeared in it

Her love
Her heart
Would come in the room
 and her eyes lit up
Everytime she heard that familiar sound of his voice
as he would say what had quiet a ring to it
Howdy Doody Judy
There are no words I can write to prove it

It was as though her whole face became aglow
Her heart filled with a kind of love
that most of us will never know

Her feeble body suddenly became strong as ten men
and her eyes said
That she knew the sound
so familiar in her head
It was then and I knew only then
True love existed in that place
Right there in that time

Ther world stood still to her
with his face and touch
The love that I witnessed made me miss my love
so much

When in the world where she had no recollection
of much at all
But when her family came in
That was all brought to a halt
almost as if the terrible curse was nonexistant
the love was too strong for it to consume her mind
Right there in that time

I witnessed a feeble, emaciated body
and a mind that was gone
That had been confused and scared
for so so long

But in that instant
Her love popped in the room
The confusion and fear stopped
with the mere sight and sound of her groom

It broke my heart to have to ease her into my every visit
each and every day
But my compassion turned to comfort every time
merely for the sake
That I could say his name
And peace came upon her face
And it was as if love filled the entire place

He loved her so deep and so strong
That the simple fact that she recalled
Showed me that true love and an open heart
could not be wrong

Meeting her and the chance to love her
taught me much in my own life to date
That pride and a closed heart
Is one of hate
One of lonliness and a destined fate
to never experience the fairy tale
I knew could be true
And for the lesson from a woman without knowledge of teaching me
I say
Thank you
Thankyou for showing me it was okay to reclaim love that was always mine
Right there in that time

Her mind was more erased over the months and the days
But her love and heart always stayed

She walks with angels
and her mind is now clear
The thought of her finally reclaiming all the time and memories
again brings me to tears
But tears of joy and warmth
that her thoughts are rekindled
and she smiles so kind
And she is remembering every detail
Right there in that time

I now have learned to love
like never before
And open up that once closed door
The door to my heart
Now that I am free
AGAIN I want to thank that little cutie
And as her love would say
Howdy Doody Judy

She waits there on the streets of gold
With ALL her memories far and old
But the one thing that I admired most
The memories that are so fine
was how she NEVER forgot the love
There in that time

Smile that wonderful smile
Let those eyes sparkle and dance
And now that your memories are yours again
Look forward to one day having that chance
To greet your love
at Heaven's door
And you will have enternity to share memories galore

Oh how wonderful it will be
Eternity with him in it
Right there,
In that minute


For Judy and Johnny Watson
Former hospice patient but friends
Victim of Alzhiemers

Text Between a Mother and Son

I recieved a text message from my oldest son Justin, now 24 years old.  I recieved it while sitting in my neurosurgeon's office for a seven hour visit to start my treatments for my MS.  He has no clue how much this conversation meant and still means to me.  He and I are very close and this simple text conversation brought the meaning of closeness to an entirely different level.  I know we all love our kids relentlessly but this child and myself could write a book about Teen Mom.  I was never on the cover of People Magazine or on an episode of a TV show that glorifiede teen pregnancy.  That show is not reality. But me and this child were.  Somehow through mulitple marriages and one marriage and two other step fathers me and this child have made reality seem easy.  Although not always his love for me and mine for him has always been perfect.  We have had our ups and downs like most but in the end........he is my BEST friend.  NEVER once was I ashamed to be a mother.  Although I had everything most teenage girls want, I never missed being Homecoming court, cheerleader, or class favorite when he came into my life.  I was an excellent example of what a teen mom should have been, not what was portrayed on TV.  I love this child with all my heart.  He isnt fake and loves simple life, just how I wanted him to be.  I really did do it right even at such a young age.  I am doing this blog because we all know electronics and I am  so fearful of losing this text conversation between us as I sat alone in an exam room with my wonderful father to start a journey that will be traveled for as long as I live.  He has no idea how much it meant.  He is more private than I because I find comfort in using life struggles to see me through and sharing them.  So I want this text conversation saved for as long as I live so I chose to Blog about it and quote it verbatum.  I plan on future blogs to share my "Memoirs of a REAL Teen Mom" so here is the beginning, starting not at the beginning but the present :)) Here is a conversation that brought me to tears and smiling as he sent this to me. 

Justin:
Love u mom, more than anything in this in this world, you've had the biggest influence on my life and was ther for me more than anyone. I just wanted to let you know I'm so proud for what u done in life, you've made it through stuff that would kill 99% of people and still keep smiling.  You've bounced back and came out of the hardest situations.  I love and I am honored and proud to call u my best friend and mom.

Me:
Baby I love you more than I can ever tell u sweetheart!! You changed my life 24 years ago for the better and showed me love I never knew existed :) and that is the absolute most important thing anyone has ever said to me :))) that makes me have a whole new outlook and I am gonna kick this MS' freakin ass!!

Justin:
YES!! Just be pumped you can do it, I'm not even worried about it because you've done faced death in the face and overcame some of the most difficult things physically and emotionally. And you will run through this like faucet water, you will destroy it! Me and Blake are extremely proud of you and will back you in anyway.  You've already every goal as best mom ever so don't ever feel like u haven't, bc to me and Blakey ur the best thing to ever happen to us.

Me:
Well good cause I know I haven't been perfect :)) but I sure thought the love we all have for eachother is perfect enough and what decisions I was making at the time seemed right!!
Despite anything and everything (didnt save this part but i think i said our family is full of love and strong)( I told him how much Matt loves him and Blakey and often wants to tell them he loves them but young men at their age he fears would think it was weird lol)

Justin:
Awh yeah we got a good lil family, I love everyone in it to pieces. Matt's family to and I love ole Matt he's good people. I like watching sports with him more than I've ever liked watching it before

Me:
Well good :) I love u baby doll

Justin:
Love u to

Me:
Tell me funny YouTube videos to watch lol me and dad are laughing at some and that movie trailer for Bad Grandpa haha

After this Justin sent me exactly what I needed and suggested Bill Dance's Funny out takes.  Me and dad laughed until I thought I would have an episode of cataplexy, sitting outside the physician's office :-D

I was so thankful that day for this text and for my daddy being with me and for the sweet text messages from friends and from my step mom and family. 
Thankful to be able to call mother who returned my call later and tell her about my 7 hour doctor visit because she shares the same illness. 

Reason for writing this blog though is to cherish this moment.  My son Justin and I have been one another's steady constant through divorce from a long 11 year relationship with a man who accepted him since he was less than a year old but our marriage ended. A little brother that he adores was a result of this marriage.  A three year relationship with a man that was VERY good to us but I knew it wasnt forever and didnt want to put him through his mom having that experience again.  Then a second marriage that ended in divorce for reasons my ex and I know but I found forgiveness as did he and the result, ex in laws that still mean the world to me and two of the most beautiful souls ever put on this earth by God himself.  Also a third marriage to the kind of man I dreamed about since I was old enough to become the hopeless romantic that i am.  A man never married and no children yet loved me and mine.  Yes we had our issues and I was so broken when he chose to experience life without all the issues me and my kids came with.  BUT regardless we found our way back to one another, I tried everything in the world to try and live without him, in my mind for his own good because I have never felt that someone I love so much deserved all the hardships that came with me.  I have never felt worthy of that type of once in a lifetime love I had for him.  BUT after an arrest related to my illness and loss of everything I had owned since we had our Break, suffering for over a year going through so much pain and embarassement and undeserving loss of self esteem, pride, and my one thing I had that made me special, he found the love he once had for me in his heart again :)) I resisted but finally put my pride aside and admitted I needed him, I needed him like the body needs the heart to beat, like I needed the air I breath, like ........well just like the life I had without him needed him in it.  Just like from the first moment I met him.  I was living, and living for my kids whome i love more than life.  For the first time I wasnt typical strong Phonenix Denna, I was vulnerable, forgiving, non revengful Denna and opened my heart to a second chance without resentment and non forgiveness.  Trust me when I say it has been very hard to open my heart and bring the walls down.  Fear of being damaged again.  Fear of losing my souldmate again, to stress, job, or life in general.  But i found strength to admit that I was on a journey that the love of my parents, step parents, and kids could travel with me BUT I needed the missing link.  Now that I have all the pieces to the complex puzzle I will succeed.  My love and my kids and parents all help me find that inner strenght that has always seen me overcome so much BUT not to abuse it and have it over power me.  To admit that yes I Dont need certain people in my life but if I choose to to have them because of love so relentless that breathing and smiling is not possible without them........then I not only choose to have them but ......... I DO NEED THEM!! I am so blessed beyond measure to have all these people in my life and to my son Justin......THANKYOU FOR BEING THE MAN YOU HAVE BECOME. THANKYOU FOR BEING SO WONDERFUL! THANKYOU FOR THE BEING MY STEADY CONSTANT WHEN EVERYONE ELSE QUIT. THANKS FOR BELIEVING IN ME!!!!
I LOVE YOU MORE THAN ANY THOUGHTS I CAN EVER PUT ON PAPER OR WORDS THAT I CAN EVER SPEAK FROM MY MOUTH!!! I AM SO PROUD OF YOU WHICH YOU HAVE ALWAYS KNOWN AND I AM SO PROUD OF YOUR SIBLINGS. THANK YOU FOR ALL YOU HAVE DONE!! Even times when Mom went through heart ache and pain and I hid it and kept your life as normal as possible But i was truly falling to pieces on the inside........THANKS because I KNOW you always knew I was broken on the inside. I love you BEYOND MEASURE!!!!

Dear Diagnosis

Dear Denna,

  Today is the day!  The day you have dreaded for years.  The day a doctor confirmed your diagnosis that so many other physicians have tried to label you with over the past 10-12 years.  I know you have avoided it for so long because your a "go getter" and not a "quitter."  I know you hate labels and hate to be ill.  You have worked so hard being a single mother at times and maintaining your calling as a hospice nurse and have feared this day.  Feared of losing your ability and right to drive or provide care to your patients as they pass from this life.  But girl the time has come.  Its going to be bittersweet, knowing what is wrong and actually recieving treatment and possibly feeling human without tons of caffiene, nicotine, adipex, or herbal remedies for the energy you cannot remember having.  It is just time for you to take care of the one person you never have.......DENNA.

   It's going to be swimming against a current with all the trial and errors of finding the right medications that fit your lifestyle, which is very busy.  You will need to listen to your body for the first time and take time......time to nap if needed, time to breathe, time to meditate and allow stress to decrease so your condition isn't worsened.  Those bouts of cataplexy are intinsified when you are so stressed with your four kids that you try to be a good mother for, at times you overcompensate and all you do really is not necessary.  They love you anyway, unconditionally.  Your work as a hospice provider comes with a high stress level and could possibly not be the best career move for you due to the lack of schedule and the on call nights with having to report to work despite long nights on call.  You are constantly burning your candle at both ends and hardly know if you're coming or going.......well, that has to change girl!! For the first time in your life you need to establish more routine and work you SELF CARE into this routine.  You cannot live healthy any longer being spontaneous and by the seat of your pants.  No more seven on seven off on call jobs and working at the hospital on your days off.  STOP complicating things for yourself and take it easy for the first time.  Again, listen to your body, you know what it is trying to say. 

   Think about that near fatal wreck.  You were exhausted that day and went to work.  Never to return home to your children but for them to get a phone call that you were fighting for your life instead.  Remember the love of your life and how scared he and those children were.......for 18 days you rested.  Long needed rest but think of your loved ones who were so torn up over your possibly not recovering, the months of therapy, the multiple surgeries and the aftermath which you still feel today.  Did you ever stop and think that the reason for that wreck maybe your narcolepsy?  Well WAKE UP. 

   Let me show you the silver lining in case for the first time you fail to see it.  The doctors in AL will NOT pull your license or your RN license.  HOWEVER,  limit your driving.  STOP driving while exhausted.  How many train tracks and redlights and medical charting you can't recall do you have to do to take care of yourself?  How many patient visits in the middle of the night do you need have problems recalling?  Stop and stop now.  Slow down.  Allow the docs to treat you and enjoy your life AWAKE for a change.  Not dreaming with your eyes wide open, falling down laughing.

   I know you have probably already become somewhat antisocial since certain things have manifested in your daily life.  Like the collapsing with laughter, anger, and fading out during intimate moments.  I want to take this time to encourage you to love yourself.  Love yourself like you love your husband and your children, like you love your parents.  Love Denna enough for once to care for her.  Embrace your diagnosis and be relieved.  Stop hiding it and be open and make people aware.  Encourage your family and friends that love you to become educated.  Continue to laugh at yourself and make jokes about being half "nervous goat" :) People love that sarcasm and sense of humor you have. 

   So with this information it is not medical because you can obtain that from your physician.  I am writing you with the REAL life part because I do love you!! This is your third chance to take it easy and love your family as your full time job :) EMBRACE it. There will be days that your daytime sleepiness is in overdrive and it seems you just can NOT keep your eyes open.  It is going to be the same "painful sleepiness" that has always made you want to cry, call in sick, or play hookie when your were in school.  But your medications will help tremendously.  Especially your medications for cataplexy.  So your "nervous goat" episodes will be minute.  I guess all your friends will have to find someone else to startle or crack up :)  I would like to take this time to encourage you to be careful and be your own patient advocate as you are for your patients.  Avoid Ambien at all cost.  I know you have NEVER in your life been compliant with any medications BUT you HAVE to be compliant now.  To have your eyes wide open and see what all you have been missing while in a constant brain fog.  Things look so different.  Explain to anyone that tries to love you about agitation and frustration and occasional bouts of moodiness until you get all this in line and it starts to REALLY help you.  This could prevent a divorce or loss of people important to you.  Make them aware and the ones who truly care for you will support you and understand.  All those years of sleeping in class and avoiding the lunch line the first time you face planted in the lunchroom are not completely over BUT will be WAY less likely.  Keep your sense of humor and don't shelter yourself from the world.  Don't be mad or hard, you do not always have to be so strong.  It's okay.  It's okay to cry, be sleepy, take a nap, and refuse to drive even a short distance.  You KNOW when you do not need to be put into such stressful predicaments. 

   So put your ear phones in and do your meditation with music.  Turn on your James Morrison, Amos Lee, or Ray Lamontague when your feeling you are becoming anxious or overly stressed.  Take a nap.  Enjoy drug holidays and leave off your medications a day like you choose and enjoy a lazy Sunday.  Enjoy a peaceful night sleep occasionally now that you are being treated.  The visitors, the lucid nightmares, and terrors will be VERY minimal.  All your symptoms will not disappear but I promise they will decrease and your quality of life will greatly improve.  Have I ever lied to you?  Exactly, Enjoy the clarity and the full length movies, the intimate moments, and the "excuse" to take a nap.  Enjoy knowing your not crazy and it wasn't all in your mind and that you never had demons taunting you :)

   Rest easy my friend, my best friend, and remember what you always think and say.......I am going to say it to you now.......God gives his toughest battles to his strongest warriors!!!! Flight of the Phoenix girl!!!

                                                                                                                  Much Love and Support,

                                                                   

                                                                                                                  Denna D

Here In My Life........Just In Time

Here we go again
Please not tonight
Give me rest for once
Until daylight

Noone should dread the sun as it sets
And praise the sunrise
After a night with no rest

That's how it is
Here in my life
Most days I am much too weary
to be a mommy and a wife

Not to mention the fog
That smothers my thoughts and memories
Making it difficult to distinguish reality from dreaming

Days of sleepiness
Tired as hell
Seems as though nothing helps
To make me feel well

Days of doing tasks I cannot recall
Then wondering if i even did them at all

Reminding loved ones of talks we once had
Only for them to inform me we had not
Makes me so mad
The madness comes from the hurt within
But its not anger at all
But sadness from all the talks and memories
I cannot recall

The days of wasting life
Sleeping hours away
Fall into nights where morining
Seems like an enternity away

Tossing and turning
Watching the clock
Anxiously awaiting morning's arrival
And the visits to stop

Doing this and doing that
To wear myself down
So maybe I can get some sleep
And in my slumber remain safe and sound

I don't know the feeling of not being embarassed and ashamed
But the feeling I know too well
Is the one of sadness and pain
And dread
Of the strange disease I have in my head
That causes me to sleep any and everywhere
Except in my bed

The one that causes my body to collapse
And become limp
With anger, excitement, or laughter
That is merely a glimpse....
Of what it's like here in the life
Of a sleepy mommy and wife

Days and nights filled with forgetfulness
And regret
Of things I failed to accomplished
This weighs heavy on my chest
Almost as heavy as the visitor that taunts me at night
Suffocating me
Ruining my life
Night after night

Finally I seem to have spent all my energy and nod my head
In a blurry haze I find my way to my bed
Just in time
Once again
For the nightmare to begin

Putting My Writing and Thoughts to Use

This is an old blog from one I started years ago I found it last week but I want to save them to my main blog so bare with me!

Putting My Writing and Thoughts to Good Use
Well I am constantly reading blogs and actually writing things myself day to day. SO, I decided I would Blog all of my writings etc so that I would have a record of it and also have all my writing in ONE spot. I truly wish I had starting Blogging before my accident so that all the details of the last four years were more like a story rather than little memories and thoughts from multiple synapse firings throughout the day. The ADD frame of mind.
I started this Blog because for years and years I have been told by homeless people, average Jon and Jane Does, the millionaire, the famous singer/songwriter, and the famous sitcom actor/actress, that i am special, unique, mysterious, witty, bitchy, and even very intelligent.....a former state swimmer, head cheerleader, dean's list, homecoming court, class favorite, teen mom, go getter, two time divorcee, wild child, recluse, experienced one of a near death experience, single mom four times over, a dreamer, creative, kranky, hard exterior, etc etc......but yet Denna you are such a .......average southern gal.
I have been through some hell in my day and even raised my share of it. My mother will most definately vouch for that. My dad, well he would vouch for that also and also add .... she may have been hell on wheels sometimes but she's tuff as a pineknot and hangs in there like hair in a biscuit. My mama feels the same but her reply was always....she was of the devil and i knew it from the time i nearly died having her to all the times she nearly died while i was raising her :) haha I was a pain but it came from my strong will and stubborn demeanor. At the same time I never met a stranger and was friendly and loving. Thank God my parents raised me firm but managed not to dampen my spirit. As a neurosurgeon that I worked for for 11 years referred to me, a firecracker, which also blossomed into another nickname, TNT!! Thats fine by me because great things do come in small packages. I like to walk in somewhere and impose only lightly.......then.....BANG i make sure all understand the things I am TRULY capable of.
Well enough for today....just a preview. I was a teen mom, not like the show teen mom, making it on the cover of People Magazine was NOT my experience having a child so young and continuing to raise him alone for 22 years. Nope I never made it to a magazine cover yet I am a role model in one way that I also never ended up on the front of Hard Times Magazine or in the local arrests forum. BUT Teen Mom is only the beginning of my journey. I have been a student, a teacher, a mentor, the mentored, a secretary with a four year old on medicaid, married and divorced two times over, a kickboxing queen, a work a holic, a stay at home mom, both, a free spirit, a nervous wreck, a narcoleptic, life of the party, the party pooper, a single mom of four, domestic violence, June Clever, Roseanne, College graduate, Mrs. Jones, Hospice Nurse, On call that is, worked for state, worked for Avon, almost opened my own business, and a Director of Nursing for a corporate company. Best friend, lover, wife of a coach.....a coach of three and four sports at a time at times. I am the happiest woman in the world with fairy tale stories and sad case country music video about the southern girl that started young and has never been anywhere and has been misjudged and mistreated and at times treated better than i should have been. So ok audience, thats me in a nut shell. That does NOT even break the ice on all the things i have been through, experienced, and seen. I am woman hear me ROAR. No man that i have ever known could have endured what i have been through and picked myself up from and continued on. Watch me as i keep going. My closest friends and family KNOW, please dont get in her way while on a mission, she will pick up and take you on her journey OR if she has a premonition of you and its a bad one,she will step on you on her way to her mission. THEN LOVE YOU.
For more of my so called life that.......according to my soon to be sister in law.......should be a weekly reality sitcom....nuff said.
Posted by 1Tuffmom at 3:37 PM No comments:
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Labels: ADD, ADHD, coach's wife, college, divorce, hang in like hair in a biscuit, highschool pregnant, Lupus, multiple children, multiple divorced, Narcolepsy, near death, nurse, single mom

The Reality of Dreaming

We all dream.  Some remember some don't.  Some wake us up crying, some wake us up smiling, and some wake us up scared.  The reality of a dream for me is usually lucid and more realistic than most can imagine.  As of lately I have become a member of some pretty awesome groups that have led me not to hide my illness.  No, not my MS, but my narcolepsy with cataplexy!  The reality of a dream for me comes in naps during the day, drifting off for seconds at inappropriate times, often unnoticed by people around me, or my night slumber.  A dream in my world is very vivid and lucid.  From the man that visits occasionally with heavy footsteps to the pressure on my chest sucking the air and life from within me haunt me more than not.  Lately, my night visitor, the large pasty pale man with the stitched wound on his face wearing loose clothing and heavy boots has left me alone, however the lucid dreams of trying to move to get to my children and save them while my body is paralyzed but my mind is wide awake haunts me.  Lately my dreams are taking place in my granny Aycock's old home on Route 3, otherwise known as Woodmont Drive.  The first one was about two months ago.  Me and Matt were staying the night in the room my brother and I stayed as kids. The antique white bedroom suit was exactly as it was then. A huge bed that I had to jump to get on, an end table with a clock and lamp, a dresser with a mirror that was aged with antique perfume bottles placed neatly on top, and a chest towards the foot of the bed.  I can see it now almost as well as I can see it in that dream.  It started as a weird scenario that would never happen.  Matt and I were separated and I was angry at him because he had given a key to a friend I used to work with and allowed her and all her kids and spouse to stay there.  We were arguing because he had NO RIGHT to allow anyone to stay in my grandparents home especially since they were deceased and he and I were separated.  I decide we should bed down for the night and halfway into sleep I heard a dog fight outside the window to the right.  I opened the window and two dogs were being attacked by two other large dogs.  As I went to the window it opened up into a walk through door, I walked out and yelled at the dogs to "git!" One growling walked towards me and transformed ever so smoothly into a male human and said for me to mind my own business and go inside! I turned and ran inside and laid back down.  Then I heard a ruckus in the room where the other family lay asleep.  Startled and thinking I was dreaming I sat up in bed to a demonic looking figure half animal half man.  His neck was crooked and he had a shot gun!! Because his neck appeared broke he was a terrible aim! He shot and shot at me and missed and I explained to Matt he was a bad shot and can't hit the broad side of a barn and to keep moving towards me as he aimed to shoot at him! Matt did so and this demon kept shooting and we were lucky to avoid injury and Matt tried to save me and got shot in the arm! I screamed and told him he shot my love and he would die!!!!! As he laughed an evil hysterical laugh that horrified me the only thing close was an ax.  I picked it up and hit him with all my might, you can imagine revenge on someone or something hurting the one you love!  I so vividly felt the ax sink in his skull and as he fell I could NOT stop and continued to hit him over and over before checking on Matt!! I woke up breathing hard and looking around the room!! Every sound all night made me wake up!! By the time dawn came I found myself paralyzed once in thinking I heard footsteps!! Only to finally be able to move and realized it was the leak in the shower. WHEW!!! I told some of my family about it! I shared this I suppose cause it was the first lucid dream that I conquered my demon! I was also but at the same time, not so lucky in my next dream.

This one was two nights ago.  It took place at my granny Aycock's house as well.  Her big pretty front yard with the two big trees, one in which our old tree house once resided and I spent many summers. This dream didn't even start pleasant it went straight to a dark headed male that I do not know shooting at me and my family! The man, whom in my dream was an acquaintance and had been no threat to us, opened fire.  It quickly fast forwarded to me being gunned down and looking at this man as I lay in the ditch by the mailbox in my grand parents front yard.  As he walked away I raised my head and my dad was across the gravel driveway In the other ditch.  I told Daddy that whatever he shot us with was NOT killing us to lay still and stop breathing if he approached again.  My dad then offered the advice to "lay still baby if he thinks you're dead he will stop!" I told my dad lay down and shush!!  I lay there hurting and helpless other than to offer that advice to dad and tell him to pass it down to the others.  I laid very still  and heard him coming, I was willing to take the brunt because I was his main target!  He shot my daddy again and came to me........he shot me again and again!! It felt like razors shaving through my body and burned like fire and I found the strength to lay still.  My hand flinched and he said, "Aww your hand moved that's a sign you aren't dead!" And he put his gun pointe blank range on my palm and shot!  I managed to stay still!! As he walked away down the road I waited til he was gone far enough and lifted my head and my dad was looking at me........I woke up on the couch in my house.  I needed to go to bed with Matt but I was afraid it was another restless night and didn't want to keep him up.  Before I could move I fell asleep and I was slumped over and had a sleep paralysis attack and felt as though I could  not breath.  Knowing I was not around Matt to arouse me for that split second or minute I felt as though I would die.  This of course kept me from immediately wanting to sleep.  I sat up a few minutes before residing to bed with Matt where the rest of the night was a sequel to my dream picking up at different locations. 

Exhausting!! Just a day in the life of Narcolepsy!! No wonder we are so exhausted all day and have doctor ordered naps daily!!! Not to mention a day filled with wonderful cataplexy triggered by laughter, pleasure, and anger or excitement. All of which I have learned to stow away way beneath the surface due to cataplexy.  It's been a rough year which is a whole different post on an entirely different day! 

The Man In the Moon and Mr Sandman

Most of my readers know I suffer from Narcolepsy with Cataplexy and suffer from what is called hypnagogic hallucinations and vivid dreams (usually nightmares) For those who doesn't know what this means, well basically, it sucks to me some nights and others its ohhhhh soooooo good to be me and sucks to be you!! 😂
Last night was a dreamless night for me which is very odd! Almost makes me nervous as to WHAT is in store for the night?? Makes me almost unable to enjoy my day due to the fact I know these demons that haunt each and every narcoleptic won't allow this to pass by!!
A dreamless night for me without this pale extremely large man lurking around in my house peeking in my doorway and wearing his heavy boots or the rowdy gang of guys that torture me and my family several times a month .....well it is like anyone else having a decent night sleep in a hammock at a sandals resort per say!
Regardless I woke up later than usual, trying to cherish every moment, and feel pretty decent without my stimulant yet! But I still dread the night. As a little child I was so concerned about returning to school on Monday that I could never enjoy my Sundays. I have same feeling of doom and dread and anxiety as an adult simply awaiting my fate.....night after night!! It is emotionally and physically tiring!! I am tired and my body is tired!
I am part of some groups on the infamous face book :) Z head Giggles, Narcolepsy Friends, and narcolepsy Network. We post serious issues but I can honestly say that by far narcoleptics have the funniest personalities and are most definitely the best people in the world to poke fun of themselves in light of such torture. We have joked around about Narcos being the zombies of the so called upcoming apocalypse, some state we are possessed, some just simply think we are cursed. As if for me? Yes it's a possessive curse that restrains me, yet, all of us seem to have some sort of sixth sense......and have had it most of our lives. Very strange but true if you could live with a narcoleptic for one month or be privileged to ones journal.....you would see an aray of things that intrigue you. For one, how many do dream about forthcoming events, ones that predict things minor and major, and those that miraculously probably have the answers the nation seems to be unable to establish! If ONE scientist took a narco from every walk of life, every occupation you can think of, one of each religion, even non believers......I feel in my heart you could probably put alot of pieces of the puzzles together!!
I'm fortunate to be mentally strong....not everyone is.....I can honestly see how one that suffers from this disease got labeled years ago before doctors or scientists and these people were mistaken for witches, possessed, or evil, would have went off the deep end shooting at objects that don't exist in an attempt to protect!! Or at that moment of hallucinating and being caught between that place of reality and dreamlike.......mistaken loved ones for evil entities or Intruders!!! We are those that without the correct diagnosis the sandman never comes and we never got the concept Man in the Moon because for us he is evil and torturous! Hang in there my odd Narc buddies we are of a dying breed :)

Another Restless Night

Darkness falls
Sleep eventually too
Sandman fails to allow deep slumber
Like he allows for you

My body is exhausted
And it cannot keep on
It shuts itself down
Unfortunately not for long

In your eyes I appear to rest
But here, where I am
It's such a mess

Shhhhh I hear him coming
Circling through my house
Walking room to room
I remain quiet as a mouse

Then I realize
I'm surely to easily be seen
And i need to run to protect my kids
Must do it sly and keen

His heavy steps get closer
And he moves closer to my little girl's room
I'm terrified and need to save her
But I am unable to move

My mind is aware that her life is in danger
But my body is paralyzed and will not move
My heart is raising oh what do I do

It's not from being afraid, from fear
Cause nothing can keep me from keeping my babies clear
Of harm and danger at any expense
But I am helpless and pissed it doesn't make sense

His footsteps are heavy
They come closer by the minute
This is a horror film
And I am in it

Why he is so slow I don't understand
What does he want from me, this man?
He passed by not harming my kids
My body will not cooperate and I can't even open my eyelids

I'm scared and terrified
But my body will not move
No matter how hard I try
I can do nothing not even cry

I'm breathing so hard
And the breaths are fewer and farther apart
As I lay here and suffocate
It stops
There goes my heart

I lay here and die
Cannot help but wonder what's on his mind
Why he visits over and over
Time after time in my sleep prying
But he will be disappointed to see I am already dying

Why must he enter here
Right now?
As I take, what seems to be, my last breath?
I will not face the wrath tonight
Of his riddles and tests
He always says he wants the heart from my chest
I'm already dying man just let me be
And finally I open my eyes one last time to see
He is coming anyway
Coming for me

My body is paralyzed head to toe
He is quiet now and where he lurks
I no longer know
All I can do is breath heavy with fear
Then my heart stopped cause I realize he's near

He stands over me I can feel his presence here to my right
Why does he torture me night after night
I can feel his breath right in my face
So close that his lips I can almost taste

I hear no movement any at all
But here a slight whisper as though he calls
For another evil lurking kind
Maybe after years of nightly torture this is my time

I'm no contest at all for a man anyway
But my body failed me again today
If only I could get up and ran for cover and not failed to protect like a good mother

Again after emotional torture and pain I wake up in my room to darkness and rain
My body is Alive and allowing me to move
So I get out of bed and move around my room

Looking for signs of the events of the night and the pale man that causes me such fright
No sign of his visit its always the same
His task is successful in driving me insane

I know he was not here where I am at
Cause lying peaceful and asleep are my children and cat
My dog never barked and is fast asleep
It's just same torture I get from this disease

It allows no time for sleep or peaceful rest and always awaken before he stabs a knife in my chest
When does it end or what medicine is needed
But they scare me almost as bad as the torture and bleeding