Monday, December 29, 2014

Annual Report 2014

It’s that time again, when I take a moment to assess what I've gained and lost in the past year, and what changes may await me in the coming year. As you know, I try to strike a balance. I don’t sugarcoat my condition, but neither do I wallow in self-pity.

Mine should by no means be considered a typical disease progression. With MS, there is no such thing as typical. Everyone’s experience is unique, but, because you read this blog, you’re intimately familiar with at least one person’s narrative. Feel free to review my 2011, 2012, or 2013 assessments. I suppose you could say I did this for 2010 as well, but it’s in the form of a poem.

So, how did 2014 treat me? Quite roughly on the health front, I’m afraid, but not so badly in other ways. Here are the highlights:

2014 Negatives:

  • I had my last infusion of intrathecal methotrexate. It seemed to halt my disease progression in 2012, but in 2013 my progression returned, so I saw no reason to continue this treatment very far into 2014.
  • I had more difficulty eating, drinking, and grooming.
  • Stress injuries to my left bicep tendon and left wrist plagued me all year, leaving me with essentially one useful appendage, such as it is. An orthopedic doctor saw nothing he could do for my left bicep tendon. A different orthopedic doctor gave me a cortisone shot in my left wrist. Both areas are still problematic, but I feel that very slow healing is taking place.
  • My handshakes have become wimpy, indicating that my one useful appendage is continuing to weaken.
  • Spasticity, particularly the nighttime variety, increased in intensity and frequency, and also spread to my arms and hands, not just my legs.

2014 positives:

  • Physical therapy continued to help me maintain some strength and flexibility in the face of disease progression.
  • We installed an overhead lift system, and it was covered by insurance, thanks to the hard work of my occupational therapist and my primary care physician’s office.
  • I published another column in MS focus magazine.
  • I was profiled in Everyday Health.
  • I took some time to improve the blog site.
  • After a year and a half, I got a local park pathway installed, and had a newspaper article published about it.
  • I got my medical marijuana card.
  • My daughter is now engaged to a nice young man.
  • Throughout the year I spent a lot of time on my secret project. I may tell you what it is in 2015.
  • I spent another year above ground – still preferable to the alternative.

2015 potential losses (if my disease progression continues these things may be the things that I lose next)

  • More eating and personal grooming challenges.
  • Eventually my bladder is going to stop working, and that is really going to suck. This could be the year.
  • A few things that I can’t even imagine (the devil I don’t know)

2015 potential gains
  • Saving the iBOT – maybe this will be the year of its revival.
  • More writing success at the blog and elsewhere.
  • Regaining utility in my left arm as injuries heal.
  • A few positives I can’t even imagine (I am in Las Vegas this week trying to win the big jackpot, for example).
I conduct this thorough review only once each year for a couple of reasons. First, it takes that long for me to determine if certain changes are the result of permanent disease progression or are merely the normal ups and downs from aging, seasonal affective disorder, or my body's sympathetic response to the menstrual cycles of the various women in my life.

Just as importantly, I only do this once a year because it can be a harrowing process. As I contemplate my losses and gains, I tend to extrapolate – envision what my life will be like down the road if the disease progression continues at this rate. I am concerned for my future health and fearful for my future happiness. But, if fifteen years ago I had been given a preview of what my life is like today, I would have been concerned for my current health and fearful for my current happiness. But I would have been at least partially wrong, because I'm currently enjoying my life. It's more than just a blog name.

So I wonder, will I be able to maintain a level of contentment no matter where the disease takes me, or will my pool of resilience eventually run dry, and the future conform to my worst fears? I don't know the answer to that question, but as long as I continue to share my journey with you, I promise to render an honest assessment.


  1. Thank you for sharing the year's ups and downs. I try not to think too much about what the future may hold because I know it would make me not the person I want to be right now. It is comforting to think that life is not permanent and stable for every individual even if they don't have a chronic health issue. What the heck, I could get hit by a bus tomorrow. Kathy

  2. I can not express how much I enjoy your blog. I relate because I am also on the progression trail.

    Gave up the handshake because of the fear of disease transmission. If I develope a fever my nervous system shuts down and I can not get up without significant assistance. I extend my elbow instead and it is usually met with the same.

    I hope the secret project is a book!

  3. An honest all I ask...thanks.


  4. Kathy, you are so correct. Everyone's dying, we just know our enemy intimately (or we think we do).

    Dennis, it's the same with me. Luckily, I rarely get a fever, when I do, I'm an absolute wreck.

    JE, you are most welcome.