Tuesday, June 9, 2015

A piece of bread, a moment in time

I sat there, 5 years ago, stuffing a piece of bread in my mouth.  That was all the energy I had for that moment in time, returning from work, exhausted.  I looked back at my blog entry from that day.  I wrote, "Everyone is tired. I'm REALLY tired - I hope I make it through the day. I may be calling my doctor ... because I am tired from MS attacking my body and I'm about to go on steroids."  Presumably then I started falling all over the place and on June 10, 2010, I went on steroids.

But this is not about that piece of bread or that moment in time.  About a month and a half after that, I started taking Ampyra, and I've been moving forward ever since.  No steroids.  Just continued improvement from a medication that is not supposed to stop MS.  Never say never.

A year later I wrote this blog: http://msandfaith.blogspot.com/2011/06/reflections-on-year.html
Summary: I was improving. Life is good.  "It's amazing to me - a year without MS attacks. When I have an MS attack, my legs collapse - I hit the floor - I'm totally exhausted. When I go on steroids I get a rush - then I get angry - it's a roller coaster ride. But now it's been a year without this. And a year without the roller coaster ride of steroids - I am grateful. It's because I'm on Ampyra - nothing else makes sense. I used to have attacks every 5 to 6 months. Given the stress I've had at different points during the last year, I should have had several attacks."

Today (2015) my daughter remembers the steroids and one day said, "Remember when you went on the drugs that made you so mad?"  Those were not fun times.

Fast forward to 2012.  (http://msandfaith.blogspot.com/2012/06/two.html) (The excitement, and the amazement continued.  I wrote: "Almost two years on Ampyra, the drug supposed to help with walking, not with MS attacks.  Two years of improvement with walking, sitting, standing, and much more. Two years I thought would never happen.  Two years of exploring what is next. Two years of change.  Two years of being glad I hadn't given up.  Two years with God beside me as I traveled down a different road."

The miracles continued.  By this time I had new Bioness leg devices which help me walk.  No evil steroids.

And then, 2013.  (http://msandfaith.blogspot.com/2013/06/downside-up.html) "All I can say is wow.  It has been 3 years since I have had to be on steroids for an MS attack.  Wow.  For 3 years I have been able to wake up each day and get up, even though each day I sit on the edge of my bed, wondering, before rising, if my leg muscles will work.  For 3 years I have continued to improve on the medication called Ampyra.  In those 3 years, my world has been turned "downside up," meaning life has become so much better, manageable, possible, less overwhelming, amazing, wonderful, and the list could go on.  It hasn't been easy - what I have never is.  It doesn't make any sense - other therapies haven't worked, have caused allergic reactions, have had side effects - and this medication comes along and works - and then neurologists say an MS diagnosis doesn't really fit me - and on and on - and I try to make sense of what does not seem to make sense to so many - including me - the impossible as possible - downside up."

The miracles continued.

2014 (last year) (http://msandfaith.blogspot.com/2014/06/4-miraculous-wonderful-years.html): "I have come so far.  I started taking Ampyra.  Ampyra is not supposed to alter the course of MS.  But as soon as I started taking Ampyra, my MS halted completely.  2 days after I started taking it, I knew something was different.  I could stand longer.  A few months later, I started physical therapy (PT). Ampyra and PT have taken me to where I am today.  I moved from using "AFO" braces to investing in Bioness.  AFOs allow muscles to atrify.  Bioness builds muscle.  I wish more people realized this, especially physicians.   I have come so far.  Legs with big AFO braces would swing out and around for the 50 feet I could walk.  Gradually with the Bioness my legs can go straight, one in front of the other."

And so we come to today.  It has been 5 wonderful, glorious, miraculous years of God walking beside me along a path of uncertainty.  I am so grateful.  I am grateful at the progress I have made and continue to make.  I am amazed.  I have dreams of me running that I love.  I have wonderful, supportive family and friends.  And I continue to try to push forward, trusting that God will be with me no matter what road I choose to follow.

There have not been moments in time when I stuff bread in my mouth.  There have been many moments of time of amazement and happiness.

Will you be grateful?  Be grateful that you can walk; grateful that you can write.  Be grateful for all those things you can do and never, ever, take them for granted.