MY ILLNESS STORY, How my world changed in a moment.

Trying my hand at a new blog.  This is a place for me to share my unexpected journey.  However, as you will soon see, while most of my days can revolve around my illness, I don't usually let my world revolve around it.  This disease will not define me or our family, even if it's trying harder and harder day by day!

 My STORY!

Over 2.5 years ago, in early 2011, I was a very active soccer mom of 3 children.  I was about as happy as one could get.  Everything seemed to be almost perfect. My husband had a wonderful job, my kids were all thriving and mostly healthy, and I had an amazing life!  I was living my dream of being a stay at home mom!  Then one day everything changed!

I was in the thralls of training for tennis.  I played 3-4 times a week, and I worked out about 7-10 hours every week.  My passions were cooking, sewing and designing for my daughter, traveling, shopping, reading, and tennis.  We had a very active family.  We traveled every chance we could get.  Our family vacations were always a highlight.  My husband and I had an amazing marriage and friendship (still do).  My kids did well in school, we were active in our church, and we were a typical family with typical family ups and downs.  We had just returned from a 2 week New England trip with the family.  That's when our world got turned upside down!

With no warning and for no known reason,.....I became very sick.  It was like a light switch!  I became quite ill and ran back and forth to doctors knowing something had changed and was deeply wrong.  This went on for 4 months.  Doctors saw how 'healthy' and active I was, and chalked it up to Meniere's disease and/or Vestibular Migraines I had suffered with for 10 years.  HOWEVER, one day, with zero warning, all hell broke loose and I fell to the floor!  I was rushed to the hospital and had to be hospitalized for a long 2+ week stay completely bed bound with no explanation of what was happening to my body.  That's when our new journey began.  No one dreams that in their 30's the next 2 years of their life will be visiting world renowned hospitals and doctors, spending literally week after week in hospitals and emergency rooms, shopping for the right wheel chair, having surgeries, picc lines, pill after pill, injections, and then eventually talking about 'sweet, sweet time'.

 I spent the next year trying to find out why I had become so sick, and if I would ever be well again.  One day I just couldn't STAND UP anymore.  That's not some figurative speech, I literally could no longer stand up.  Every time I tried to stand, I would pass out or get so dizzy that I would fall to the floor.  What was happening inside my body?  After 12 hospitalizations in a solid year,  I was finally sent to a Chicago hospital for a week long evaluation.  Northwestern Hospital then sent me to Mayo Clinic in Rochester, Mn, after I was told I was beyond their scope of expertise.   It was there that they realized what exactly was happening inside my body, and that there was a problem with my Autonomic Nervous System.  It wouldn't be until 8 months later until we would know the whole scope of my illness.  I was able to get in with the top doctor IN THE WORLD for Autonomic Failures in Toledo, Ohio.  With his expertise and knowledge, I began a very aggressive treatment program to begin to my 'new life'.

My disease process is a very rare and a complex one.  Many people, even many doctors have never heard of it or didn't know it even existed.  The Autonomic Nervous Systems basically controls everything your body does involuntary.  That would include: breathing, heart rates, blood pressures, temperature control, renal, digestive, and others.  Basically, everything important!  When this system begins to fail, as in my case, the entire systems gets effected.  When I stand, the necessary constrictors to push blood to the heart and brain like in a normal individual, are unable to get the blood where it needs to go for the body to maintain posture.  If you don't have enough blood pumping through that heart and eventually to the brain, you will pass out.  Furthermore, the system acts like a thermostat for your body.  In individuals with autonomic dysfunction, the thermostat begins to go haywire.  It doesn't know up from down, right from left.  The entire 'needle' so to speak, moves side to side like a pendulum.  That means for no reason your heart rates and blood pressures can go very high to very low, temperature control is completely out of wack, the entire system just cannot regulate itself any longer.  In my case, it became so bad that I began to loose consciousness while lying down from such low heart rates.  After a very scary episode last November that could have very well been the end….As a result I needed a pacemaker implanted to not allow my heart to not plummet.  This was truly rock bottom, or so I thought at the time.

After getting a pacemaker at the age of 38, I realized my world would never, ever be the same again. However, the doctors, my husband, and I all had great hopes that this would provide me some type of quality of life.  Unfortunately, it did not.  I had a special type of pacemaker implanted to not only regulate heart rhythm, but also detect sudden changes in blood pressure.  While it worked in part, it wasn't enough.  I continued to be very, very sick.  I had many close calls, and my body has literally up and down like a roller coaster for months and months.  I continued to pass out if I tried to do anything at all.  I felt sick all day, ever day.  Since Oct. 2012, I haven't been able to even sit in a chair for more than 3 minutes.  I haven't stood for more than that, either.  My existence has basically left me in a supine position.  I had to have a special wheel chair made to recline and allow my legs to be up at all times.  (which is obtrusive and not practical).  I cannot attend church, the movies, restaurants, my children's events, or even sit at a table and have dinner with my family.  I'm in the bed all day and night.  On a good day, I'm lucky enough to go to the kitchen to get my own glass of water.  Everything I loved and enjoyed is taken from me.  I cannot cook, sew, serve my family, shop, or even dream of exercising.  Trying to come up with a hobby from a lying position with your head on the pillow is a daily task.  I cannot read much due to the eye pain and lack of blood flow.  I cannot sing or even talk for long periods of time due to breathing difficulty.  I cried the first time I realized I couldn't read a book to my daughter out loud. My creativity has had to be taken up a notch.  Some days the 'pain' is intolerable, while others I may have moments of relief.   I have endured pain levels that I couldn't really even put into words.  Everyday consists of some pain and discomfort for over 2 years now, however, some are more manageable than others.  I've had 3-4 times over the last year and half that have been a 'tease' and allowed me to do more and feel better for a brief period of time.  While I love those times and go crazy with creativity, I've found it to be a very cruel tease in the long run.

The days that are easier, are often sometimes even more difficult for me.  When I feel too sick to move, I'm perfectly content to just lie here staring out the window.  However, the days that are less painful, tend to make me want to climb a mountain or run a marathon, but I must stay lying in the bed despite the burst of energy.  It kills me more when my body cannot cooperate with my heart or my intensions or my dreams or goals!  Of course, every good day is a blessing!  I am beyond thankful for the moments that I get to stay in the game.  I love being involved with my family...even from this bed!  I long and crave for the painless moments that allow me to laugh, smile, talk, engage, and be apart of my kids' lives.  The little moments are so much more precious to me, now!

After multiple failed treatments, every off label drug tried, and zero signs of improvement, the doctor came in the room and looked at my husband and I in the eyes and told us that there was no longer any chance that I would recover from this illness.  We may be able to ease the symptoms, but I will not get better.  You can or never will fully prepare yourself for those words.  No matter how strong you are, or how prepared we were to hear them, it was nothing less than a knife piercing our hearts of hope.  We completely understand, medically, that a full recovery is extremely low, but I still cannot seem to bring myself to clean out my last tennis drawer!  Why am I keeping those cute little tennis skirts?  What part inside of me won't let me give them away?  At first, I thought it was crazy denial....but I think I've come to realize it's my last 'little hope' that maybe...just maybe...this nightmare could end one day, and if I get rid of them, I've gotten rid of my sliver of 'hope' that keeps me going back to the doctor and trying new treatments.  Unfortunately, I just have to sit and wait.  There is no time frame given to me....it could be quick...it could be long and drawn out...I must just literally, lie here day by day...waiting!

My doctors put me in the ICU in Oct 2013 for a ground-breaking trial of 2 drugs that could potentially, synthetically constrict the blood vessels enough to allow me to stand.  The first drug, which had been tried only a few times, was a complete NO GO!  My heart didn't react well, and while it allowed me to stand for a whopping 7 minutes, I had great difficulty.  The second drug, with a room filled with doctors watching medical history being made, showed very minor signs of improvement, but did regulate my heart and blood pressure during the trial.  I will be the very first person, recorded, in the world to have this drug being administered outside of the ICU.  It will run continuously at home through a pump 24/7.  (I will post more about this at a later time)

This is just a very brief synopsis of what the last 2.5 years have looked like for me.  I've tried to provide a small glimpse into my reality without adding the 'woe is me' element.  My story is DRAMATIC, my story is, at times, unimaginable, my story is one I never, ever dreamed or planned on making ...my story!  However, it is MY story.  It's all I have to work with, for now!  When my body allows, I've chosen to 'dance' it out!  I won't say the days, especially lately, are not often filled with desires to scream.....cause they are!!!!!  There are many days when I cannot imagine living another day of this type of life..... But...there is always a BUT.....I have chosen to live the life I was dealt with to the FULLEST!  My 'can'ts' are numerable, but finding my 'cans' have continued to give me joy.  I have found the silver linings in most of the days.  Some times it's harder and harder to look past the dark, dark, gloomy skies and find those silver linings, but I try!  It can be as simple as getting another chance to hold my child, or as huge as cutting my own apple today....no matter where we look, there is ALWAYS a silver lining!