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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...

Friday, April 14, 2017

20 Days to Eugene

In 20 days, whether I am ready or not, I will line up with thousands of my closest friends down at Hayward Field, and we will start that 26.2 mile thing we do.  Just showing up is an amazing feat.  This is especially true for me this year.  In January of this year, just a few months ago, I was hit by the most debilitating exacerbation of my MS disease course.  Now, about 10 weeks later, I am back on injections for the first time in years, I have continual buzzing my lower extremities, and I've developed an intermittent phenomena of phantom smells, like smoke and sour milk.

And yet, I still run.

I used to think that I had a finite number of running steps in me, that the more I ran, the sooner I would run out of those steps. And yet, I would still run.

I am reminded that people with MS tire easily, that extra stress can trigger exacerbations, that I ought to take it easy.  And yet, I still run.

If you've read any of this blog you've probably picked up on this theme.

So, imagine what happened when I woke up one morning in January with my feet numb up to my shins.  If you guessed "went running" you win the prize.  Two days later, when that numbness had grown up to my torso and I hadn't felt my feet in days, I still went out for a run.  By then, I wasn't just running for the sake of exercise or the freedom I felt in that joyful action.  By then, I was running on fear.  As long as my feet kept hitting the pavement, I wouldn't have to feel my emotions, as if I could mask my fear by the pounding I felt in my feet, even if all I could do was imagine that feeling. The pounding was gone.  Only a dull thrum reverberated from where my feet struck the ground.  This quickened my heart rate and ruined my pace anyway.  By mile three, it also reduced me to snotty, wailing sobs of panic.

I knew I had to do something.  The thought occurred to me that there was a real chance I could hurt myself if I continued to run with numb feet, and because I was now also an emotion wreck, I finally called the neurologist.  The doc ordered an MRI on my cervical and thoracic spinal sections.  She also sent me for skulls X-rays and started me on steroids.  The MRI results came in; for the first time in over ten years, my MS was active, and active in a terrible location, a very narrow portion of my brain stem that connects my head to the rest of my lower body.  (I would like to use expletives here, but I will refrain.)  The active lesion was essentially strangling my lower body.

The intravenous steroids and antibiotics wreaked havoc on me.  I started back at yoga, back at meditation, back at walking.  I pined away for my long runs.  The plans for Eugene in May seemed to grow more distant.  The hope to compete with my team for the Hood To Coast in August slipped away like the feeling in my toes.  I was at an all time low.

At the lowest point of this entire ordeal, I went to the movies with my friend Stephanie.  You might have read about Steph from earlier posts, too.  She and I ran my very first 13.1 together some years ago now.  She has been along this crazy ride with me for most of it and there isn't anything I would imagine keeping from her . . . expect, this?  I decided to show up early to the movies (has my husband drop me off like I was s middle school kid), but I felt embarrassed about how I was walking and I didn't want Stephanie to see me that way.  What's worse, Steph mentioned she was bringing a friend, a woman who usually places in most distance runs we see her compete in, and I really didn't want this lady to see me shuffling, hobbling up and down the stairs, maybe even falling.  Also, we were going to La La Land, full of dancing.  Dancing.  What the hell was I thinking?  I didn;t even know if I would ever walk normally again and I was going to see a movie about dancing with two runners?! Well, like I said, I showed up early, go seats right in the middle of the theater, then settled in.  I made sure I had visited the bathroom because I would not be able to climb out over people.  Steph arrived and she had Colleen in tow.  They were very warm and asked how I was feeling.  Of course, I minimized my response.  As the movie played, I found myself emotional at the dance steps, I found myself afraid of the ending because I would have to get up and move down the stairs with people watching, and I found myself angry.  Yep, I felt mad that this exacerbation had come on when it did and in the way that it had, like my MS should have been exceptional.  When the movie got over, I just sat.  I told Steph I had to wait until our aisle was clear and so we all sat patiently.  Then, I got up and used the backs of seats and hand rails, to graciously guide myself down and out of the theater.  Steph gave me a ride home because my doctor had suggested I not drive.  When we got to my house, Steph offered to help me up my front steps.  I declined, so stubborn and proud.

Once inside, I collapsed with grief.

Fast forward a month and Steph and I are running with Neal Benson, of our Hood to Coast team.  We are coming up on ten miles, a distance I never thought I see again.  I was so overcome with emotion that I had to sprint to the end to keep from bawling.

Fast forward another few weeks and I was running a 17 mile stretch, solo at the second half with Neal filling in for Joe (Coach) at the half way point.  I had texted Neal and told him not to wait for me at the end.  He responded, "not a chance."  Then, he ran out to meet me at mile 16 because I was struggling.

Forward to the 19 mile run and I felt strong.  I allowed myself some time to walk.  I allowed myself some time to stumble.  I thought a lot about how my Yoga teacher says, "how can you do less?"  and I tried to do less.  It was a good run.

This weekend will be 21 miles, and now we are 20 days to Eugene.

I am day-to-day . . .

But aren't we all?  I mean, really, if I am just polishing the timebomb of Multiple Sclerosis, aren't I just day-to-day every day?  Nothing has changed because I had an exacerbation in January.  This is the way it was before that event and it is the way it will continue to be until there is a cure.  And so I will run when I can, walked when I can, and maybe even dance when I can too.  And it is the same for you, who could eat a poisonous mushroom or slip on a banana peel or contract polio.  Well, you can't contract polio, but you get it, right?

At my lowest point, feeling sorry for myself, I said to my husband, "I never wanted to be the fucking ABC Afterschool Special.  I just want to go out and run sometimes and have a semi-normal life."  He assured me that I didn't need to be anything to anyone and that it would all be okay no matter how it turned out.  And here we are . . . 20 days to Eugene: the most important run of my running career so far.

#eugenemarathon2017

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 of 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.

Monday

Tuesday


Wednesday


Thursday
(after a new IV, and several missed veins)


Friday 
(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!

Thursday, January 26, 2017

Something Wicked...

I woke up Sunday morning with some numbness in my feet.  Rather than think this had anything at all to do with my MS, I thought my socks were too tight.  Isn't that funny?  I went ahead and did my nine mile run with Joe's Team.  Later, I noticed that the numbness seemed to go all the way up into my shins.  By Tuesday, I could not feel my feet at all.  Stupidly, I kept up with my training, running despite the fact that I could not feel my legs.  By today, I am numb all the way into my torso, front and back.  I have called the neurologist and made an appointment.  She will see me tomorrow, which is Friday.  I am pretty freaked out.