#4 "No Matter Where You Go, There You Are"

It has taken some time for me to work up the energy for this post, so I apologize for the delay.

The past few weeks have been hard, busy, and full of ups and (mostly) downs.  We finally got to meet with the specialist at Swedish Medical Center in Seattle.  Since then, I have experienced another MRI, a barium swallow study, an EMG (electromyogram), a pulmonary function test, and more blood work.  Coming up in the next couple of weeks are a specialized brain scan (DatScan), sleep study, wheelchair consultation, meeting with another specialist, and follow up with a pulmonary specialist.  Do I feel like a science experiment?  Yes.  Are we getting answers?  Yes.

The most recent diagnosis is ALS (Lou Gehrig's disease)-- total surprise.  My symptoms have traveled a unique path (like most patients), and it made it difficult to diagnose.  Two neurologists are in agreement, and I meet with an ALS specialist in June for a "final" 3rd opinion.  Definitely not good news.  During this same time period my symptoms have gotten progressively worse, and it is clear to me that we won't be reversing the direction of this journey.  This isn't really something I can fight.  At first it was hard not knowing what I was fighting.  Now, it is hard to know that I really can't fight.  Don't get me wrong--I am not "giving up"-- just understanding how to prioritize where I use my energy.

I am hoping for as much time as I can get -- so much to do.  If only my energy and physical abilities could match the needs!  I wasted too many days feeling sorry for myself -- yes, I was having a "pity party" (although I was enjoying lots of old black and white movies from the '30s and '40s).   I will still have some of those days, but I want to have more days of enjoying life.  I just have to enjoy it differently than I used to.

With lots of downtime, I have had lots of thinking time. I have started a mental list of all of the great adventures I have had in my life -- it even surprises me!  I will save that for another post, but if you haven't taken the time to think about your life so far in those terms, try it.  It definitely brings a smile to my face.

I have received the most wonderful notes, cards, emails, texts and visits from people in my life, too.  I can't even put into words how powerful they have been, and how helpful they have been in helping me "keep my positive."  Bill and I are learning to ask for help, accept help, and appreciate the love being shown to us.  I don't ask "why", as it doesn't matter.  Things happen to people everyday.  It is just part of my journey.  It is hardest for me to see and know how difficult this journey is for my husband, children and family.

Thank you for sharing the journey with me.

#3 "Be Careful What You Pray For...."

First, I want to be clear that this post is written tongue-in-cheek.  Those that have known me for awhile know that I am fluent in sarcasm. This post is about humor.

There are numerous prayers and comments that have left my mouth the last few years that are being answered in interesting ways.  Let's start with praying for God to help me with patience.  Seriously?  Apparently, I should have been a little more specific.  Every step of this process is about waiting -- try this medication, come back in 6 weeks; now we will change this, come back in a month; then wait 2 months to see a different doctor.  Even getting dressed takes forever.  And God must have thought I was praying for my husband, too, as he is having to exercise GREAT levels of patience with me and this whole process.

I believe I was doing some serious praying about my weight last year, too.  Apparently, working out 5 mornings per week was not working for me--but now the weight is just falling off -- not enjoying that process as much as I expected.  And I REALLY miss salty/crunchy food.  Speaking of food, here is a funny item. When in high school, I worked full time at our local hospital as a dietician's assistant.  I was in charge of calling the individual orders, and making sure each patient's tray was complete.  I used to swear I would never eat pureed food after that...guess what my diet now consists of???

Let's also cover me talking to my mother about shuffling her feet a couple of years ago -- now those are my feet we hear shuffling down the hall.  And my jokes about the electric lift recliners ( that I used to jokingly call "launch" chairs) -- yes, you guessed it--I am sitting in one. The only chair in the house I can get out of without a struggle.

I also have been known to be a little chatty -- even my report cards from school referred to my "talents" in this department.  I must have used up my quota of words, as speaking is becoming more and more difficult.  What an inconvenient time, too, as I try to communicate with my medical team!  As my left hand has limited function, I now type using the "hunt and peck" method, so even email is work.

I have lived a proudly independent life...until I became mostly dependent...in what seems like the blink of an eye.  I really do find humor in much of these circumstances, thank goodness.  As hard as some of us try to control our lives, there really is so much we have no control over.  I am learning to "let go and let God" every step of this process.  It is not easy, but in many ways it is freeing.  What lessons are there in this situation?  First, never say never.  Next, stop long enough to enjoy each day. And third, let people love you and be there for you -- they need it as much as you do.

Love and great appreciation to all that have written to me, called, texted, emailed, visited, prayed and thought about me.  Everyone of you have a piece of my heart.