2nd OPINION!----U GOTTA READ THIS!

After spending 3 solid weeks in my own personal hell, we abruptly sought out a second opinion in the midst of some of the worst physical pain and anguish I could possibly describe.  I've not really ever described what my actual pain is like on this blog or really anywhere.  The depth of which I have to endure physically is often far more than what my mere words could even begin to express.  I've found that when I'm trying to describe how I feel, the words just don't seem to adequately relay what I'm experiencing in all reality.  I often feel it's cumbersome to even begin that process, and many can't or don't want to handle the details.

I suddenly slipped down hill right before Christmas time with yet another ER visit.  About a week after the holiday, all hell broke loose.  I began to experience intense chest pain with my heart racing and then dropping into 'pacing'.  My blood pressures were swinging from very low to dangerously high throughout the day.  I quit being able to keep any food down and had only eaten a few crackers and hot tea after 2 full weeks, dropping quite a bit of weight very quickly.  I had constant headaches, intense eye pain, dizziness, and could feel the blood draining from my head from even a reclined position.  I couldn't even get my own glass of water.  I had been told that I was now in complete autonomic failure, and this was the beginning of 'the end'.  Our greatest fears were happening all too quickly!

After having multiple, VERY SCARY episodes of dangerous heart rates and blood pressures, my husband put me in the car and drove me to yet another autonomic clinic for a second opinion since local doctors have told us I was well beyond their scope.  I wasn't even sure I could make the trip, but we had traveling mercies and arrived to the hospital.  The same day I was admitted, and several teams of doctors immediately began running test after test.  The EKG, weight loss, and labs all showed the extent to which I had been suffering. We had been told that it would take at least 6-12 months before I could get these types of autonomic tests done being there are only a few places in the country that has the capability of running autonomic tests.  We knew it was really a long shot to see if they would even run these tests for me.  In less than 12 hours I had 3 different teams of doctors working my case.  After 3 days, multiple tests, and feeling sick the entire time, we finally got some answers (not all the answers but some very important ones)!

This new team of doctors refined my diagnosis.  They said my organs WERE NOT SHUTTING DOWN, and I was not in complete autonomic failure.  What a wonderful surprise.  WE went to find out how long I had .....and not only was that not answered, but I was given some HOPE! ...........  However...... my heart had suffered and the stress of all that was happening inside my body had taken its toll.  My autonomic system was completely out of sync and not functioning.   My heart just cannot compensate with the stress of being postural and is not keeping up.  The chances of a recovery are very slim, but there is a chance at a partial recovery, in their opinion.  No, I will not have a normal life or ever fully recover, but I do have a shot (no matter how long a shot it may be) at some improvements.  The doctors told us that I'm still a high stroke risk, but for now........if all goes well.....I will be around for quite some time.  OMG......DID I JUST HEAR THAT CORRECTLY???????????  (yes, tears were running down our cheeks)  He told us it would be a very long, long, hard road of baby steps and very hard work ahead without any guarantee of improvement, but every now and then, people have made improvements and regain more function.  He was very cautious and guarded in his answers, as he cannot predict what MY future will hold, but he felt I may have a chance to have some improvements where all hope had been lost.

There were still a lot of unknowns and unanswered questions that the doctors just couldn't explain.  My type of illness is rare, relatively unseen, and origin is still unknown despite many tests.  Given all those factors, the doctors are always very quick to tell us that there really is no curve or guideline to follow.  Because there is no magic pill or cure, I can only hope and pray that I'm one of the lucky ones who do make some type of genuine improvements.  I will continue to take the 20+ pills and injections every day, along with some new things, and begin my slow journey of rehab.  I was able to keep down a few bites of food today after almost 3 weeks and believe that's a really good sign that the worst is probably over.  Until then, I've been surrounded by my loving family, some have traveled from quite aways to help us through the most difficult journey of MY LIFE!  I can only pray the worst is behind me because I'm not sure I could ever endure what I've gone through again.  I'm sure in the next week or so it will all hit me with a flood of emotions as I realize that I've been given yet again....ANOTHER OPPORTUNITY.

Maybe I'm more like the 'Groundhog' movie where God's gonna keep letting me have a re-do until I get it right?  Maybe there is something I need to be prepared to tackle after all this hell?  Maybe I will never let one moment pass me by without living it to the fullest?  Or maybe......just maybe, this was just life, and I just happened to get a shot to be the best darn sick person I knew how to be?  No matter what the purpose in all this is, I know that I didn't throw in the towel when the battle became more than I could bear, and that has renewed my mind!

I won't go so far as to say that "I'm thankful" for what I've been through, but if I had to go through it, I guess I did find my own strength and that of my family along the way!

My So-Called 'Bucket List' -----------Part 5 in the series

Part 5 in my series:  "What's it really like to be chronically ill at a young age?"

One of my favorite songs of all times, long before I became ill, was Tim McGraw's "Live like you are dying".  It was the only country song I'd ever had on my iPod.  In fact, I even knew all the words and would sing along (horribly out of tune) each time I would hear it blast on the radio.  As I have mentioned in many of my blog posts, I always did try to live my life with very few regrets.  I would like to believe I lived life to the absolute fullest even when I was healthy.  Of course, there were some missed opportunities, and a few days I would have liked to replay, but for the most part, I can look back and say, "I had and made a wonderful life".  I guess that is probably one of the reasons I enjoyed that song so much.  I often relished in it's reminder to try to live each week and each month as though I am not promised tomorrow.  Turns out-we are not promised a tomorrow!

In my young life, many of the things on my 'to do list' had meticulously been checked off one by one.  My biggest dreams, goals, and aspirations had been mostly accomplished at a very young age.  (I guess God knew what my future would or wouldn't hold)  There were still a few odds and ends that I had hoped to one day tackle.  I guess you could call it a bucket list.  My list was short and was mostly filled things that were small dreams.  The majority of all I had hoped and dreamed for had already come to fruition.  Those who knew me well, knew that being a wife, mother, and missionary had topped my list for many years and were my heart's true desires.  I guess I can say I was LIVING my bucket list!

I had married the man of my dreams and best friend.....I got the privilege of being the mother of 3 sweet children..........We took a lot of family trips..........I'd been to Mexico for almost 4 years teaching English and doing mission work........We had lived in many places all over the U.S........I had taught Spanish in a private high school and also to homeschoolers.......I had done some volunteer work with the elderly........I  learned to cook well and absolutely loved it.......taught myself to sew and started my own label.........homeschooled for a brief time......started and completed an Ebay business during my husband's residency......loved my job being a full-time wife and mother.........learned to play tennis in my mid 30's and had gotten into shape.......spoke 2 languages.........for just a few main highlights!

HOWEVER......after I became very sick, I was going through the few things in my mind that I had yet to accomplish, tackle, or do.  As I began to jot them down, disbelief set in.  Not ONE thing on that list could be finished!  My "SO-CALLED BUCKET LIST" had turned into my "you can never do any of this list'.  I remember calling out to God in the shower one day.....sobbing......as I pleaded......"I'm not done yet!....There was so much more I wanted to do, be, and see".  I remember that moment vividly.  It was a sobering one, to say the least.  As a matter of fact, a year later, I haven't quit crying out that phrase every few months.  Stubbornness runs in my family, and this gal has just not been able to quite come to terms with the fact that the final items won't be checked off that list.

I was encouraged by our family counselor to make a new list.  Come up with things that I CAN do and make a new bucket list.  Ok.........Let's see!  Hmmmmmmmmmmmmmmmmmmm!  Yep, same problem.  Everything I tried to come up with was a no go!  Just to name a few:
-travel (not even a chance in the world. I cannot fly, drive, or be a passenger without my legs on the dash and that doesn't work)  Our trip to Italy has been canceled 3 times now!  No romantic couple's resorts, no more cross country trips with the kids, no more seeing my hometown, and no visiting anyone!
-teach again  (too sick, too many unpredictable days, and I'm pretty sure teaching requires the teacher to remain conscious throughout the class)
-teach my children to cook like I do.  (tried it, and unless I was in the action, it was a no go!  Mom passed out each and every time)
-Renew my vows in a formal ceremony with my husband in a romantic way!  (pretty sure a reclining wheel chair is not quite what we had in mind)
-volunteer again (if I need assistance to get around, go to the restroom, and a driver the only volunteering is the person helping ME) :)
-Go on a family mission trip (obvious reason there)
-Show my children where I lived in Mexico (same)
-A few more private ones that I had kept in my heart of things I wanted to accomplish in life.
-Then the more sentimental ones:  be a grandmother, be the mother of the bride/groom, see my children graduate from high school-college, grow old with the man I adore, and others!

So, after a few weeks of throwing an internal temper tantrum, I got a chance to regroup.  I realized that my bucket list will not look like anyone else's list.  I guess it's not suppose to.  Mine had to be more meaningful than before, had to be much more deliberate in non-tangible treasures, and it belonged JUST TO ME!  I won't share my NEW bucket list with you, but I can tell you, I'm slowly checking off a few things every few months.  Some things I may not get the chance to finish, or even start for that matter.  But the list is one I believe I was destined to find.  It's one that no man could steal, no storm could destroy, and it's value cannot be measured.  My 'so-called bucket list' is very different that I had imagined all my life it would be in my later years.  But then again, so is my life.  I won't say I don't long and yearn for the old list.......because I do!  I always will.  However, this new list is one only I can fulfill-yet it's rewards are going to be seen and reaped by those that surround me.  I may pout and whine a little bit from time to time about the things I will not get to accomplish and all those endless limitations that come with living life from the bed.  However, I will also choose to be conscious of the things that I may have missed if I hadn't been the one who lives life from the bed.  I won't call it my silver lining, because, in all honesty...it sucks!......but I do know that my treasures are being stored up in a place where no thief will ever break through and steal.

UPDATE

Haven't been updating very much.  As a family, we've had a lot of things going on that are keeping us quite busy.  The weather in the midwest gave my children a 3 week Christmas break with an extra week off.  My precious husband had an accident with his foot and ended up having surgery in the middle of the night last week.  He's ok, but cannot stand or walk for quite a few weeks.  Since we only have him as our driver, my caregiver, and the sole helper to our children ......it's been a rough time for us all.  After my hospital trip before Christmas, I've been slowing declining in health again.

We had a lot of family in for the holidays, lots of activities, gifts, food, festivities, and all the joys that go along with Christmas break.  We are finally about to settle down as the kids will return to school on Monday.

We are currently having a tough time with all the changes.  We are in the thralls of making several important decisions about our family and medical decisions.  It's been a lot to keep a level head when things look difficult.  We are taking our time to make sure we are having wisdom and not letting desperation be our guide.  

My health is beginning to decline.  I've had some changes with my heart, my blood pressures, dizziness, breathing, and blood flow to my brain.  My doctors have told me that the heart is working just too hard to try to compensate for the lack of blood flow to the vital organs.  I will return to the doctor at the end of January to see if there is anything coming along the pipeline.  Meanwhile, we've changed my heart medication to see if that will provide some improvement.

I would be lying if I said this latest set back didn't faze me.  It's been very, very trying for me and for the family.  Having my family around me has helped keep my joy and focus on something besides the pain and the IMMENSE LIMITATIONS that I'm forced to bear.  I have allowed myself a few times to focus on all the things I cannot do with my family.  Having company for Christmas just reminded me of all I've lost and all I can longer do.  However, in the same moment, returning laughter to my daily schedule brought a break from those meditations.  We laughed and laughed and laughed!  Laughter is good medicine!

These are the days and weeks that are some of the harder ones and makes the challenge of 'choosing joy' a very much constant DELIBERATE decision.  My days are spent working with the internal struggle of where I will let my thoughts and mind wander.  As I lay in the bed today with my laptop propped up, I decided to put my thoughts into words.  My daughter climbed up in the bed next to me to watch the Disney version of Robin Hood.  How can I possibly sit in my own sorrow when I'm blessed beyond words to have the opportunity to spend some quality time with my baby girl on a snow day.  I do sometimes wallow in my own sorrow, but I can promise you....it's NEVER for long!  I think it's ok to be sad about all that is lost, but letting it consume me would then be wrong.

I guess I have some Robin Hood to watch now with some blueberry muffins she helped make with the dear lady who comes and helps us during the week.

HAPPY NEW YEAR! or is it?

For me, the new year often brought feelings of anticipation of what the year may bring or have in store.  In the last 3 years, I remember saying: "good riddance" to the past year......and something along the lines of "it cannot possibly get any worse".  However, it always has gotten much, much worse!  As I said goodbye to 2012 (after almost losing my life in Nov. 2012), I knew deep inside of me that 2013 would be a much better year.  However, just 2-3 short weeks into 2013, I ended up getting a pacemaker to keep me 'ticking'.  Well, that didn't go as planned!
This year, as I said goodbye to 2013,  (a year that was riddled with disappointment, sickness beyond my wildest dreams, and more limitations with each passing week) I held my tongue.  I've learned:  it can ALWAYS get worse, we have no idea what our future holds for us when it's beyond our control, and it really only boils down to how we choose to handle what life throws our way.  I never know when it will be 'my time'.  I pray it's not in 2014.....as of today, I've been feeling better in the last 2 months than I do the majority of 2013.  With a degenerative disease, it has been a sobering realization that my year will probably NOT get better than last year, but I still can make a lot of choices, changes, and hope to make a difference somewhere.
So, for 2014 it may not be my 'happy new year', but I am choosing to approach this year with my hands held upward in surrender.  I don't get to make my own choices in most cases in my life like most of you.  My outcome is not a result of MY actions, I don't get to make or break my future or change my path.  I do, however, get to decide how I will handle it, how I will allow it to change me, and if it will break my spirit or not.   This new year,  I am surrendering my past expectations and am choosing to say:  'What ever comes my way in 2014, I'm still going to choose JOY'.  I just wonder if the disappointment will be a lot easier to digest.  We shall see!

Happy New Year!