PART 1: What's it REALLY like to be severely chronically ill? -Control

PART 1 OF SERIES:  What's it REALLY like to be severely chronically ill?

I've fielded a few questions in the past from people who honestly wanted to know...what it was REALLY like to be sick 24-7.  I guess it has taken me a long time to be able to answer that question for myself.   I have known several friends and acquaintances who suffer from some sort of severe chronic illness.  I've watched either close up or from a distance how their lives have changed, and how they dealt with the unexpected journey.  While most folks will go through life with some aches and pains, very few of you will ever have to live a life altered by a real debilitating illness.  It's a territory that most of us 'younger' people probably have given little to no thought to in the past.

I couldn't have even FATHOMED in my wildest dreams that after just celebrating my 37th birthday, I would become chronically ill.  It wasn't in my 'plan' or even on my radar.  Like many of you, I had most of my pathway all paved with what I thought my future would hold.  I was a very active mom of 3, married to the man of my dreams, and living out my own paradise that I had so thoughtfully executed.  I had a core belief system, many friends and activities that I loved, and lots of busy buttons that I would proudly display on my 'busy life' bulletin board.  My priorities were those that I had deemed worthy of my precious time and effort.  My spiritual walk was one that had been tested and appeared tried and true.  I surrounded myself with those people who made me smile or were often 'like minded'.  I must say, though, I rarely took much for granted.  I truly did love my family, my life, and tried to live most days to the fullest.  (Thank God!!!!  Cause, I would probably be riddled with a plethora of regret, now.)

I'm approaching the 3 year mark this coming March 2014.  My disease process has settled in, and I'm now much more familiar with what to expect.  The first year and half was such a complete roller coaster, that I didn't know from week to week what the day would hold, or if I would make a full recovery.  I was living each day in confusion, frustration, and uncertainty.  Now, I have a lot more understanding of what's happening inside my body.  While there is still quite a bit of uncertainty, there is more of a constant in my life.  I'm constantly sick now 24-7 without the guess work of maybe today is the day it all goes away.  I can probably answer better, now, what is it really like to be chronically ill?

CONTROL:
So many things happen to someone who goes from being healthy to sick overnight or even if the process was more gradual.  It's a daily balancing act to not lose yourself.  For me, it was the loss of control.  As a former 'control freak' .....the loss of control over my life and my body was earth shattering.  It was probably the most difficult for me, personally.  It not only shook my security, but it stole my spontaneity.  Everything around me had changed beyond my control.  It was frightening, to say the least!  There was no longer anything secure or constant around me that I had put in place, except for the fact that I would wake up sick the next day.  I suddenly became afraid of 'change', because change to me now meant something unpleasant.
I was secretly terrified of any new things or, heaven forbid, something to look forward to.  I'd learned my lesson, well.  If I wanted to go out, attend an event, or plan something....my body was more than likely not going to cooperate.  This in itself was daunting, not to mention the fact, that my inability to participate could or would disappoint someone or ruin another event.  I won't say this has gotten much better, because as a parent, you will automatically feel guilt for ruining a planned outing.  However, I've gotten much better about accepting the fact that planning is no longer up to me!  I wish I could say it gave me a sense of relief not to have to be a 'planner', but that is just not the case.  There is something very secure about being able to know what to expect and when to expect it.  It's been a good lesson, however, in learning to bob and weave at the balls that life is throwing.  I've never been one to 'fall apart' in face of adversity, but I will say learning how to react to the unexpected is a daily juggling act.  I have seen that my children have grown quite a bit from just that one concept.  I guess it's a life lesson they got to learn very early.  (always a silver lining)
My best coping mechanism for 'control' has been acceptance that things will change and they will be beyond my control.  And to try to keep things around me as constant and as safe and secure as possible.  This could be as simple as a daily routine, preparing the family in advance that I will not be attending something, or slowly adjusting to any new change that will occur.  Magic cure?  Not by a long shot...but being afraid of change is NOT an option here!

Many of these things are me being....QUITE real, vulnerable, and intimate.  However, what we deal with in life is nothing less.  I'm laying it all out there in hopes that someone...somewhere....hopefully in a much less difficult circumstance than myself can grab life by the horns and ride it in the wind without looking back...and most importantly WITH NO REGRETS!

I will be writing more about the many 'changes' and the coping mechanisms we have learned along the way when dealing with what's it REALLY like to be chronically ill.

Other topics to come in dealing with chronically illness and the following issues:
FRIENDSHIPS
LONELINESS
SPIRITUAL
TOLERANCE & EMPATHY
PARENTING
JOY
GUILT
MARRIAGE
BUCKET LISTS
DENIAL vs FAITH
ACCEPTANCE vs GIVING UP

This is so true!  I was forced to slow down, but slowing down has let me 'see' the most beautiful things right in front of me all along!

So, what is dysautonomia? Why is there very little information? Why is most of the information online WRONG?

DYSAUTONOMIA is a very, very broad term to describe a mountain of conditions all effecting the Autonomic Nervous System.

There can be very mild forms of dysautonomia to the very severe and even fatal. The term is almost as broad as the disease 'cancer'. It encompasses so many different types of illness'.

When I first learned I had a form of dysautonomia, I did what most people do....I took straight to Google. I was bombarded with a plethora of information. I was immediately relieved to find out it was a rather 'mild' condition that effected mostly just young women and something that you will 'out grow'. WOW, THAT INFORMATION WAS ALL WRONG!

It turns out, there are MANY forms and types, but since many of them are quite rare, there is very little information available. Only the more mild form of dysautonomia seems to yield any online information. There is autonomic dysfunction and autonomic failure. I found through the last 2 years, that some of the forms are so 'new' to doctors and research, that many people in the medical field are not yet even trained on diagnosing or treating these diseases. It's often times a 'mystery' illness. In my case, it took almost a year before I was properly diagnosed, and I had to go all the way up to Mayo Clinic for accurate testing. My local doctors even admitted that this was well beyond their scope of training. I have had more than one doctor Wikipedia my 'disease' right there in front of me.

Since there are many varying degrees of severity, types, and forms, I found the online information to be quite vague. This added to a lot of my own personal frustration. I found it impossible to learn, research, or even share about my own disease. To add insult to injury, since I have the more 'rare' form of dysautonomia, I couldn't find any support from others online or elsewhere. As of today, there is still not even a diagnosis code for what I have. Because of my need to be proactive in my medical care, I was beyond frustrated in the lack of knowledge, research and information available. It took a long time for me to understand more of why this was the case. I, personally, hadn't responded to any medications that were recommended for my illness. I wasn't getting any better. My doctors resorted to many 'off-label' medications, as well. I still didn't respond to anything. I took to the internet again. I just couldn't find anyone else out there like me. My doctor treats only the 'worse of the worse', and yet I was the only patient to not respond to any type of medical therapy. Well, that answered my question! There are so, so few people like me out there in the world. At the time of this writing, I've heard there are less than 60,000 reported cases worldwide of the neurodegenerative disease. I guess people are not exactly throwing money out the window at the research and funding!!!! This is considered an 'orphan' disease. Clinical trials for true complete autonomic failure are very difficult to complete. The people in these studies are often very, very sick people. Many of them may die off before the long term trials needed for FDA approval are complete. Parkinson's patients can often have autonomic failure at the end of their disease progression, and because their research is well-funded, they have been able to push through some clinical trials currently in the works. This will considerably allow more information, research, and funding for those who are living with the truly disabling effects of dysautonomia.

I have purposely not shared my own personal exact diagnosis for several reasons:
#1. While my outlook may seem quite bleak, I know that the information online is not yet complete. The medical community hasn't yet finished their long term research. My doctor, who is considered the leading authority on this disease, will be the first to say that even the genetic factors of the disease haven't even been identified, yet. There are so many things left to study and research. Autonomic failure is often researched in much older patients, and I'm my own unique case! I haven't followed any of the curves so far, so I will not put the label on it.
#2. I'm currently involved in and have been in the past, on many NEW treatments and drugs that are either not yet available here in the U.S. or are so new, they've never been recorded to date. It's important that other patients who may stumble upon this site not get their hopes up, assume a new drug is being released, or push to try a treatment that may prove to be unsafe.
#3. I don't want this to become a 'medical' information site, but more of my own personal illness journey and how I'm choosing to overcome it, mentally, every day!


A few sites online can be helpful. I will try to add links.

http://dysautonomia.med.nyu.edu/autonomic-disorders

http://www.dinet.org

http://www.dana.org/news/brainhealth/detail.aspx?id=9780

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!

How others see you is not important. How you see yourself means everything. I can honestly say, this is ME! That's why I'm still 'flying' in my dreams at night and not in the bed!