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 triceps.......it 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 on......as 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.

  .

Hard Pill to Swallow

     Often in life we deal with things that are "hard to swallow."  Rejection, death of loved ones, broken heart, humiliation, and sometimes, the truth.  Lord knows I've had my days of hard to swallow but seems as though the absolute worst of times can be the best of times. I don't know if this is a mind game or trickery I have mastered to soothe my soul during constant obstacles or if I really do have a knack for being thankful for the good in my life.
     For starters I struggle with the obstacles of MS and Narcolepsy with cataplexy daily. No one or anyone EXCEPT someone with both can fathom the daily hurdles.  The struggle of simply getting a shower which somedays is more tiring than the actually not having a shower, hard pill to swallow. Being so fatigued that I prefer to not speak to or see anyone from the outside world, arms giving out before I can dry my hair, not to mention getting so overheated that I no longer feel like doing anything else before having a nap, very hard pill to swallow.  Not being able to remember or recall things that happened or forgetting important dates yep I get choked on that also. Numbness or pain to the point I'd just soon stay in bed all day to avoid a fall, injury, or embarrassment, yes big pill to swallow.  Fatigue that's more than being tired and even a 24 hour shift as a nurse plus being up for 24 more doesn't touch it. Again hard to swallow when I used to be someone that everyone thought NEVER ran out of energy, worked two sometimes three jobs.  People assuming your lazy or depressed because of something other than trying to make the best of a life drastically changed? Yeah you guessed it.
     One of the two hardest things is trying to explain it to people or trying not to get pissed over the advice they give when they are not even educated to the disease. I find everyday the less I like the general population and the more I like those like me. Those with autoimmune illnesses where their body is constantly trying to attack itself.  No two people are effected alike. Not everyone falls asleep in their soup and with MS not everyone is in a wheelchair. So all the advice, judgement, and misunderstandings are a very hard pill to swallow.
     In closing the hardest of all for me is the day of my accident and the arrests and DUI and mostly the media spotlight and all the cruel comments about me and wishing bad things on my innocent family who had nothing to do with it.  It was so hard to have not one person other than my family and friends and those that knew me to even try to defend my character.  Anyone that knows me knows my pride was my reputation and my God given talent of being such a skilled hospice nurse.  My heart hurts every single day for a man don't even know. I wish him nothing but the best and for whatever would make his life easier.  Not one time did I pray for myself through any of this nor try to excuse anything. I was physically and emotionally exhausted and like other times due to what I know now was cognitive impairment, took the wrong medicine at the wrong time. I was oblivious to what I had done. I was living in a nightmares of my own and continue physically and mentally daily to do so.  Not karma because the good lord knows me, what's in my heart, and that things were totally health related and not intentional. But the people of the world avoid ambien it is truly a hard pill to swallow and should be banned, in my opinion.
     In closing, to those who wish harm, passed judgement with no knowledge of circumstance, to the people who never give others a chance, cannot forgive, cannot ask forgiveness because crow is also hard to swallow, those who gossip, and to the ones who claim to have never known me or aren't truthful about any relationship with me, claim to be Christian yet lie and judge? Be prepared because karma is the hardest pill of all to swallow. So save room for it. Treat people how you want to be treated because you can have your life as you know it jerked out from under you too. My life has changed drastically because of two invisible illnesses and I "look fine" I know this and please never say it to me again for your pills will be hard to swallow with your jaws wired shut ;)

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.

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!!!!

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!