Friday, November 1, 2013

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


  1. Denna - what a lovely courageous letter to yourself. Thank you so much for sharing it with us. "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." I love this advice, words to live by and I may need to tape this reminder above my desk. Actually, so much of your letter is the most perfect reminder of fostering self-love and self-acceptance and promoting positivity and inner-reflection. I just love your writing and can't thank you enough for sharing it. Your friend and fellow warrior, Julie :-)

  2. Woo girl you gave yourself a stern talking to! I like your straightforwardness. I should take your lead!

    Thanks for sharing your experience. I'm taking pieces of it with me! :)

  3. Denna,

    Amazing letter. Brings many emotions home. Thank you for sharing your experience.

  4. Thank you all very much! It means so much to me to have writings noticed especially my poetry which Julie was so gracious to post also :) now that I do not have hospice and hobbies because I have no clue what I like cause I have been a mommy since I was 16 no time to try anything haha but now with my MS also and many lonely days at home, weight gain, etc writing is my release! So thank you so much it warms my heart to have feedback! So glad we can all unite and learn from one another and know we aren't alone,