Featured Post

The Hardest Thing I have Ever Done

It is quiet.  The air is still. I hear a soft pounding in my chest and my feet on the asphalt.  My heart reminds me of the task at hand: kee...

Tuesday, February 28, 2017

The One Month Anniversary of Dead Legs

On this one month anniversary of my dead legs, when I could barely walk and scarcely feel anything, that short time ago that I am now trying to recall when the numbness had crept all the up my torso engulfing my feet, legs, thighs, pelvic region, chest, back, and had started to numb out my hands, on this one month anniversary of the worst it has yet been, I celebrated by finalizing my prescription for Copaxone.  The drug is supposed to arrive tomorrow.  Can I breathe easy now?

Everyone at the pharmacy has been very nice, even helpful to a fault, almost, insisting that I apply to have the $1,200 copay waived (did and done, thank god). I guess I am ready to have the nurse come to the house and train me on the injections; I'm not going to be less ready tomorrow. But the thing is, I cannot get over how quickly this all came on.  I mean, I have known for years that I have MS, knew it when I crossed that first full marathon finish line back in 2011, and the last one in 2015.  I knew it when I was delirious at Haulin Aspen when I ran through a 60 degree temperature change and gained 700 vertical foot elevation gain at nearly 90 degrees in 3 miles at the end of a trail marathon.  Gah!  I'll know it when I run Eugene this spring.  I have talked to dozens of people who have had a range of symptoms of MS from numbness to paralysis to tumors--friggin tumors!  But nothing could've prepared me for what I experienced last month. And now, here I am planning out which night to inject and how this will affect my training and whether or not I can still run the Hood to Coast 2017.

Really, what just happened?

On this one month anniversary of those dead legs, I took myself out for a run.  I did pretty well, considering it was raining the entire time and I was telling myself I'd rather be <insert some form of sloth here>.  I have a pretty good excuse for doing <insert some form of sloth here> instead of going for a run on the best of days.  And yet, there I was, constant rain, not letting up, legs pumping me along, also not letting up.  And I had this sense of gratitude.  No, I had this sense of awe.  See, if I can do this when I should be-- or even could be-- doing <insert some form of sloth here>, then I can do whatever I want.  And so can the doctors that are working on this crazy disease and its cure.  And so can the caretakers that are helping people like me.  And so can those with MS just like me who are instead snowboarding or surfing or building houses or wheelchair rugbying.  And even if they are <insert some form of sloth here>, that's okay too.  We can do whatever we want.  Even slothful, beautiful nothing.  Even running marathons.

See, it's not just the one month anniversary of my dead legs, which are not currently dead but pulled a 10:16 pace today.  It's also the eve of MS Awareness Month.  So, break out the orange.  Time to change your ideas and attitudes about MS.  Time to change mine too.  A lot can happen in a short amount of time.

Here's me on that rainy run today.  Surprised?  I am/was/am.

Friday, February 3, 2017

Five Days A Juicer

So, I have been on intravenous steroids for five days now.  The good news is, they seem to be working.  By Sunday, my mobility was so poor that I thought I would fall down at the movies.  But today, just a few short days later, I have full mobility and can feel everything pretty much 100%

Feeling everything 100% counts for my "emotional feelings" too.  I gotta say, I am having some true fear around this.  My MRI was this morning and it went well.  At least I did not have to get a new IV lead because they were able to use the same IV from the steroids.  But the thing is if this is an MS exacerbation, and it seems like that it what it is, then there is a good chance I am going to have to go back on the injections.  The type of shots I was on before was interferon and they made me sick, sick, sick!  In fact, I spent so much time feeling sick that I was hardly active.  It was not until after I got off of the shots that I started running.

I don't want to give up running, which is another fear.  Dr. Lippencott used to caution me against physical stresses of training for long distances.  Of course, that was in the beginning when I wasn't sure what I could do.  Then I found out that I could run marathons and he changed his tune.  Still, how can I tell if the running and training and hot conditions and exertion have contributed to this exacerbation?

Anyway, here are my five days juicing on methylprednisolone.  If nothing else, the pictures are amusing.  I was taking them each day and sending them to our Hood To Coast Team Captain, Neal Benson.  Hopefully, I will still be able to run in August for the HTC.  We'll see.  For the good of the team, I'll gladly sit it out, but it would break my heart.




(after a new IV, and several missed veins)

(my favorite because it's the last day and I can feel everything again)

One thing I can say from all of these pictures, I look like I have a great attitude!