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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...

Thursday, December 11, 2014

More Silver Falls

After looking through my pictures of Silver Falls, I thought I should post some more.  We were tourists on this run, not out there for the run but more for the experience.  I might run it again next year and see how I can do, time-wise.

First off, we stayed at the beautiful Oregon Gardens.  If you have not been there, add it to your list.  It was a nice treat to start out a great weekend.  The Oregon Gardens are about a 20 minute drive to Silver Falls State Park.  They have lovely gardens in different themes, a nice restaurant with delicious desserts, and a quaint pub showing Ducks football games, or whatever else people watch on TV ;)

The morning of the run, we headed over early.  They had hot coffee and a raging fireplace, loads of snacks and lots of fun people to talk with about their goals for the run. 

 I was happy to be running with Stephanie Gray.  Here we are posing with Jeanette Walker, also of Joe's Team.  It was a wet morning, as you can see, but we were all able to keep it real in our shorts.
The night before, my niece Samantha gave me this killer headband in MS team orange!  I Run For Those Who Can't.  I was concerned that I did not have a way to keep my ears warm and viola!  Sam said "Oh, that reminds me.  I have something for you."  And she pulled out this great headband.  She picked it up at one of the Run/Walk events that she does for Suicide Prevention.



 Me and Steph under a fall.  And a bunch of other pictures that I am too lazy right now to write about.  I will say that at the end, there was one full mile of slick track.  It was half uphill and half downhill and it was a lot like running in hair gel spread out over muddy grass.  Fun stuff and must have added about 25 minutes to our time.  The nickname for this monster mile is Nutcracker Hill.  I don't get the reference as I saw no ballerinas, nor were there wooden dolls carved in a holiday theme.  The last few pictures do not do it justice.














From inside Silver Falls.  I should note that we saw a young lady just past this point who had become hypothermic.  I ran ahead to the first aid station and let them know.

Oh yea, here's Nutcracker Hill:





This is my excitement at the finish!  I have never been so happy to get under 3-something.  To tell the truth, I did not even record my time.  Maybe I'll go look it up but that was not the point of this run.  This was just for fun...and it WAS SUPER FUN!

Wednesday, December 10, 2014

A Slow End to the Year...but also a PR!

Well, I see I have not had a post since August.  I'll tell you why.

After training my butt off (quite literally, actually as I am fitting 2 sizes smaller than the beginning of the year), I opted to run the Half Marathon at Oregon instead of the Full.  This came for several reasons.

The first is that I am sensitive to heat, as you know if you have been reading.  My coach even warned against the Full, pointing out that there is hardly any shade along the course.  So I ran the half and I thought I would get a PR but I missed it by a few minutes.  Still, it was hot and so I was glad that I had opted to run the Half.

Then, being all trained up and nowhere to run, I started looking for a Full Marathon where I could cash in on my long miles.  I tried to get into Portland but they weer only taking fundraisers.  Coach said I might be able to get the team to contribute, but in the end I did not run Portland.  I was glad too as it ended up being in the 80s that morning.  Hot!

There was talk about Victoria, and I wish that I had gone there because my coach actually ended up participating (and it is sort of a dream to be able to run or walk or even participate with him--Joe Henderson is a legend!)  But the long and short of it is that I did not finish the year with another Full Marathon.  And that was okay.

I did end up running two more Halfs.  The Silver Falls Half, which had been on my bucket list for quite some time.  And the Run To Stay Warm, where I PRed.  So I started the year with a Half Marathon PR at McKenzie River Half (2:09:11) and I finished the year with a new PR at RTSW (2:07:45).

What's up for 2015?  Well, I am all signed up for Eugene for the Full Marathon on May 10.  I'll be running the McKenzie River Half again, I am almost sure.  I'd like to get a few more official trail runs in AND I think I might do an overnight hike and try to cover some distance in the local Cascades.  We will see.  On thing is certain, though.  I'll keep moving as long as I can.

Here I am at the Silver Falls Half, excited to run under my first waterfall of the course!

Sunday, August 17, 2014

Anatomy of a Warm Run

Hi All: Bees, Runners, MSers!  Thanks for stopping by.  This entry will deal with heat and running.  Here we go...

Today I had a 10 mile training run with Joe's Group (here's his book on team running). I wanted to break down the run for those who run in heat and maybe have similar issues that I face on warmer days.

I started nice and strong running with teammate Jerry.  We talked about pig farming and how much Eugene has changed over the years (as different subjects, not together).  There's something about pig farming that made me really quicken my pace.  Of course, I was running with Jerry and he tends to be a little faster than I like, even on our infamous "Only 10 Miles" training run.  So, as you can see on the little diagram below, I bid him farewell at mile two, and I walked (see the number 1 on the graphic).  I had planned to take regular walking breaks anyway as the heat climbed.

Nearing three miles, I met up with Michelle on our team.  She offered to walk with me for a bit but I told her I would like to try running instead, that she could motivate me.  I was already feeling the effects of the heat.  We ran for a bit and she told me about her upcoming trip, which gave me something wonderful to think about rather than thinking about the rising temperature.  We walked again for a bit and she was a very good sport about it.  She told me about how well she had done in both Newport and Eugene and I was stoked for her and proud to be on the same team as her and also to hear her results.  Good stuff.  (You can see where we were by finding the number 2 below.)

Then, we stopped with Joe and Tonya at the teams' first water stop.  I told Joe that I would not be coming back that way after my five mile turn around.  It was already too hot so I had planned to cross the river to the other side and stay under the canopy and near the drinking fountains.  This was a decision I would not regret.  (Joe's stop was at number 3 on the graphic.)  So off I went with a brief stop at the bathrooms at Alton Baker Park, where I saw a huge spider in my stall and also doused myself with water (see number 4).

Dousing myself with water has become a survival strategy for hotter runs and I need to stick by bathrooms and drinking fountains to make it happen.  In fact, you can see below that stops 5, 6, 7, 8 and 9 are all at various water fountains along the south side of the river.  I think it is also interesting that my pace seems to quicken after a good dousing.  Just so you know, I scoop the water into my hands and pour it over my legs and arms.  I know that I am not doing much to cool my core, but the relief that it brings my extremities is quite welcome.  Also, I get a nice long drink and that helps to cool my core some.

See the number 11 below?  That is when I decided that I would not have enough distance if I headed back to the finish just then so I lapped the senior center.  Funny, the south side of the building was baking-hot and so I had a short walk there, wishing they also had a drinking fountain.

By then, I felt pretty good about my distance and pace.  I told myself that I had about a mile to go and I could run one mile in just about any conditions, even --God forbid--70 degrees!  So I set out at a solid clip back toward the store.  After I crossed the footbridge at Ferry Street, I met up with teammate Elly and her friend.  I asked where they were with their mileage and they were at 9.3.  According to my watch, I was exactly on: 9.34.  Good job calculating the distance out at the river, I assured myself.  I guess I am really starting to know the distances by heart.  Then I picked it up a little more for the run home (well, Eugene Running Company, which is home on Sunday mornings).

I came in at 9.94 and so I ran a small circle around Joe and team, decided that I could stop short of 10 if I wanted too because I was so close, and I called it quits.

So, that's what you are seeing below.

Remember, if you are looking for cooling on a warm run, dousing with water is very helpful.  I try to avoid my clothes because of comfort issues.  But wet skin offers a cooling that is both welcomed and necessary.  In a different blog, I discuss salt.  I'll try to remember to link back to that soon.

Okay, that's it for now.  Four weeks to the big run!  HOORAY!!  Here we come Oregon Marathon! Joe's team is getting ready for you...


Sunday, July 27, 2014

Happy Birthday Run (MRT)

For my birthday this year, I had an amazing opportunity to run the McKenzie River Trail (MRT) with my friends Jeff McKay and Don Wheeler (both from Joe’s Team).  Sure, there was another, totally different race happening in town that day but we opted to get away from the hustle and up onto God’s trail.  If you haven’t been up to the McKenzie River Trail, do yourself a favor and go! It was the perfect birthday treat for my special day and I know it’s a delight on any other occasion as well.  Here’s the breakdown of our 14 miles:

We met at Takoda’s, a lovely little restaurant near Belnap Hot Springs.  Then, with the help of Pam and Tonya (Don and Jeff’s partners, respectively), we discussed our water stop and rendezvous.  Pam and Tonya would be along to offer support, and boy was it welcomed and needed!

After that, we drove up to our starting point at Trail Bridge Reservoir.  Here you can pick up the MRT about halfway down its 26ish mile descent through the lower, western Cascades.  The habitat is primarily fir, cedar and some pine, though hemlock , aspen and other leafy favorites are abundant. Under the canopy, lush ferns and broad-leafed elderberries lined our path. 

Our first stretch took us about 4 miles through the forest and along the river.  Our first stop was at Deer Creek, camping and hot springs abound!  It was good to take in a rest and hydrate before we were back on our way.

Along the entire route were many roots and tripping hazards; proof of this came for me at about mile 7 when I just barely tapped a jutting root with the tip of my shoes and spilled out horizontally landing on my elbow and knee.  Not to be alarmed though as I was just fine, aside from a nasty scrape that was more a badge of honor than an injury.  Jeff and I talked about not taking the trail for granted, and I thought that sounded pretty smart.  He said that when you relax and take your eyes off the immediate ground in front of you, that's when falls occur.  He would know too; a veteran to the McKenzie River Trail Run (MRTR) 50 K held on this very trail each year in the very late summer (usually early September). 

A link to the run can be found here: http://www.mrtr.org/  Also, if you want to see a map of the entire course, click here: http://www.mrtr.org/files/map.pdf  We ran the lower 14 miles, so just a little less than half of the MRTR...but I digress!  Where did I leave off?  Oh yes...

Just after the fall, we had our second support stop with Tonya and Pam at Buck Bridge.  Luckily, Tonya had a first aid kit so she patched me up and sent us on our way again.  Along this part of the trail, we crossed tributaries and climbed ascents, moving slower and with more caution than we had before.  Also, Don had a few falls along the way and I was afraid I would trip again too so I was grateful for the slower pace.  This part of the trail is familiar to me on a bike so it's a much different experience on foot. We passed the Belnap entrance road and I started thinking that we were almost done.  Then I remembered that we still had to pass Paradise and we still had another small climb coming.  I think this took a little wind out of my sails, but I still pushed on.

As we passed the ranger station connection, Jeff told us this was where the MRTR finished up, but we were still planning on putting in another mile up to the mountain bike staging and shuttle parking.  I knew that my husband and kids would be there waiting and I knew that Pam and Tonya would be there with water and cheering.  As I thought about this, this amazing trek through the woods--pushing myself in a way that I wouldn't have dreamed when I was celebrating my birthday last year or the year before that-- I was overcome with gratitude.

Someone should have told me when I was in my 20s how much I would love this experience.  But you know, I don't think that 20 year old Rhonda would have been able to hear it, let alone believe it! No, I think the stage had to be set for this moment, this birthday of 43 years, and this glorious run. 

I finished just a little behind Jeff and Don but I finished feeling good.  I finished feeling like I could do it again, which made me wonder when I would.  Would it be next week or next month?  Maybe I would come back next year for the MRTR in September 2015.  But whenever it would come, I would welcome the challenge with my whole being.

Thanks Jeff and Don for a great run!  Thanks Tonya and Pam for helping us at our stops giving us the assurance and confidence that we could do it and that you would be there when we needed you.  Thanks Dave and my girls for coming to the finish and cheering me in.

What a great birthday! I cant imagine a better one.  Happy birthday to me!

Don Wheeler on the left, me in the middle and Jeff McKay on the right
 

Thursday, July 17, 2014

Fuel the Fire!!

As I ramp up in miles, so too does my need for proper hydration and nutrition increase.  This is especially the case during my long runs.  But what is the best way to stay hydrated and fueled?  These things seem to vary widely based on the individual. Here’s what works and what doesn’t work so well for me:

I think have the hydration issue mostly settled with minor tweaks based on distance and temperature. Throughout the week of a long run (bi-weekly for my training) I increase my fluids and add a regular regiment with coconut water.  I realize some might not enjoy coconut water, but I have found one that is low in sugar, high in potassium and has a great flavor (thanks to the pineapple). It has no cholesterol, no fat (check your brand) and is low in sugar (again, check your brand).  This coupled with constant water intake, especially the day before, plus a little extra salt with dinner the night before, can really make the difference in how I am feeling in the hydration department.  And although, no amount of hydration can curb my wilting decline when the temps exceed the low 70s, it gives me a bit of a buffer even on warmer days.  Besides, it is better to have extra hydration and not need it, then to need it and not have it.

Fuel has been a trickier issue for me.  The night before, I try to “carbo load” by pour on the pasta.  I learned from a friend the benefit of plain pasta as opposed to saucy pasta, still bland is as bland does.  What I have found to be a nice treat and also pack in the carbs is a balance of gluten free pasta coupled with fresh veggies or a salad.  I think the more complex ingredients in the gluten free pasta sustain me longer than burning out on simple white flour sugars.  During a run, I rely on a number of different fuel sources. I have found that I really like ShotBloks by Clif Bar for their amazing amount of sodium (in the marguerite flavor only).  Also, if it’s hunger that I am trying to satisfy, I goggle a LaraBar, or at least part of one, near a water stop or on a walking break (hey, there’s no shame in a nice walking break!)  As far as Gu goes, I have yet to find one that I love.  But something that I do love lately is called Runa.  This is a high energy beverage that is packed with naturally-occurring caffeine.  As a bonus, the company aims improve livelihoods for indigenous farmers in the Amazon.  I have never once felt a crash from this beverage like I have the few times I’ve tried Red Bull (honestly, I can count these occasions on one hand). Besides the eco- and fuel benefits of Runa, I also really like the taste.  It’s like a sharp iced tea without bitterness. 

You may find some of these methods and products to your liking or you might think I am completely off-base.  Remember, everyone is different.  What I would suggest is that you experiment on training runs and zero in on what works for you. 

Whatever your choices are, remember to fuel both your body and your spirit.  Always keep a happy mantra in your thoughts on the road or trail.

Happy flying, little bees!

Sunday, July 6, 2014

Eat Up (Gluten Free Mack'en Cheese)


After my 15 mile training run today my coach asked me if I maintained a special diet for my health around the MS.  I told him that I avoid preservatives and processed food, I avoid artificial sugars, and that I do not eat fast food no matter what.  I have found that making my own food is healthy and easy.  But then I got to thinking as I drove home, what if there are people out there in the wonderful world of the web who might benefit from some of my tips on preparing food and watching what I eat?  What if they would like to see some of my meals and snacks up close?  So, over the next few months I am going to post a few of my most favorite recipes.  I think these can help any runner, not just those with MS.  Bon Apetit!

Starting with my favorite carb loaders, I bring you:

Gluten Free Mack'en Cheese!
•7 tablespoons unsalted butter
•4 tablespoons amaranth flour
•2 cups milk
•1 teaspoon salt
•fresh ground pepper to taste
•1 teaspoon GF onion powder
•1/2 teaspoon GF garlic powder (not garlic salt)
•12 ounces freshly grated cheddar cheese (about 3 cups)
•8 ounces freshly grated gruyere OR Swiss cheese (about 2 cup)
•4 ounces freshly grated parmesan cheese (about 1 cup)
•small container of fat free ricotta
•16 ounces, al dente cooked gluten-free macaroni (we like the quinoa and brown rice at Trader Joes)
A note on cooking GF pasta if you are planning on baking it with a sauce (as in this recipe or with a rigatoni): leave it slightly undercooked.  It will be more absorbent and take in the flavors of the sauce.  Plus, it is less likely to turn to mush for leftovers.
Cooking:
Preheat oven to 350° 
Melt 2 tablespoons of unsalted butter in a 3-quart baking dish. Set aside.
Put the baking dish with butter in the preheated oven and leave just until butter melts. Remove and coat bottom and sides of the dish with butter using a pastry brush. 
Melt 4 tablespoons of butter in a medium saucepan over low heat. Whisk in flour until loose paste forms. 
Slowly whisk in milk. Increase heat to medium and whisk until mixture thickens (might bubble but do not boil). 
Remove from heat. Add salt, pepper, garlic powder, onion powder
Add all cheese slowly, 1 cup at a time, but do NOT add the ricotta
Stir until cheeses melt and mixture is smooth and creamy 
Scoop small spoonfuls of the ricotta into the buttered baking dish
Pat dry cooked pasta
Pour half of the pasta in the buttered baking dish and cover with about 1/2 of the cheese sauce. Distribute remaining pasta on top and evenly cover with remaining cheese sauce
Lightly salt and pepper and bake for 45 minutes or until top is golden and bubbling
Cool for at least 5 minutes before serving
This same dish can be prepared with regular pasta as well.  If you are using it for a carb loader, I recommend a whole wheat variety for a more complex carb.

Friday, June 20, 2014

Insight Into The Lesser Known

It is important that I remember why I started this blog.  When I was first diagnosed with MS, I had a friend tell me that I should learn all that I could about the disease.  This was during the "soft diagnosis" period, before they had done the spinal tap and confirmed that I--in fact--did have MS.  She said that if they found out later that what I had was not MS but some other neurological disorder, well, then I would have some knowledge about something of which I had no previous knowledge and I would be glad for that, at least.  She went on to explain that if I was diagnosed with MS, then I would be better prepared once the "concrete diagnosis" was in.  She was right.  And I can now apply that line of thinking to many other things as I have learned and grown.

See, what I discovered when I was first "soft diagnosed" nearly ten years ago--when that calloused neurologist joked "at least you don't have a brain tumor" --was that there wasn't a lot of personal information available on MS: the experience of having it, living with the effects of the disease, coping with it, dealing with (at the time) the limited drugs and their side effects, the barriers in treatment, the stigma in admission to employers and co-workers.  In a decade, a lot has changed.  Still, it was what I discovered then about MS, or should I say what I realized was missing in the field of knowledge that led me to name my writings "Insight Into The Lesser Known."

I remember scrambling for information.  Certainly the facts we available at their base level.  MS is an autoimmune disease.  MS is a hyperactive attempt to control disease in the brain where antibodies attack the Mylin (the protective layer) around the brain's delicate nerves, thus causing short circuits in the body of the MS victim.  I saw the word 'victim' a lot more back then than I do now.  But I digress.  The point is, what I was looking for was personal experience.  Where were the blogs, the stories, the insight into the intimate places where those with MS suffered or didn't suffer? How could I learn about the emotional side of this chronic illness, the effects on families, the loneliness of this disease?  Well, I decided, I would start to share my own experience, from the very beginning.

At the time, blogging was a limited field.  It is wonderful to see who far we have come without social media.  I know some may frown upon this decimation of personal information, but for someone like me, someone looking for insight into the lesser known, blogging has been a great tool.  It has enabled me to not only share my own insight but to also learn so much about the personal experiences of others.  And now there are social media sites that are just for those with MS.  I have found these places to also be very helpful.

When I started writing this all down, I promised that I would share the good and the bad.  My goal was to reach those with questions and hopefully provide some answers.  This continues to be my goal today.  Sometimes the question is, can I get through this depressing dark winter or stressful time?  And the answers have filled these pages.  Sometimes it is about my struggles with heat and diet and exercise.  Often it is about overcoming the odds.  Triumph!  Winning!  But I am also honest about my setbacks and struggles.  That is only fair. 

And all along, I have been engaged in running.  I have run trails and hills and marathons.  My readers have come with me on each step.  I have shared the difficulties and the joys of each big race, of each event.  I have written about my children and running with them, running with my husband, with friends, with memories and ghosts and strangers.  And I have written about running with MS.

This is something that I feel deserves a written record: running with MS.  You see, if one of you reading this has MS (and I know of several now) and you stop and think to yourself, "I bet I can do that too" even for a small minute, a fraction of a second, giving you a little insight into a subject that I found no written word on when I first started, then I have done my job.  I will continue to do my job.  I write to you, to grant you this insight into the lesser known personal struggles and accomplishments of having MS and living life anyway.  I write to grant insight into the lesser known MRIs and the lesser known finish lines, and the lesser known defeats, and even insight into the lesser known triumphs and joys of victory.  See the path, my friend.  You can come this way too.  And maybe when you share your insight into what is now the lesser known, you will describe new wings of glory flying through the sweet enraptured sovereignty of a cure.


Sunday, June 15, 2014

Father's Day

This year for Father's Day, I ran the Prost8 8K in honor of my dad, Ron Zimlich.  He was recently diagnosed with prostate cancer.  They have every reason to believe he will be okay because they found it early.  He is looking into the surgery now and I will keep you all posted.  I love my dad a lot and think about him all the time, so it only seemed fitting that I would get to participate in this event on Father's Day. 

Happy Father's Day, Dad!  I placed 2nd in my division and paced 9:17.  Let's just say I felt inspired.
Here are my stats!

Saturday, June 14, 2014

Training Begins Again

Today marked the official beginning of my training for The Oregon Marathon later this summer, on September 13.  I ran this morning's moderate distance with Joe's Team.  We are currently in third place for the most enrolled runners for the teams signing up for the marathon and it is already starting to feel electric! 

After only two very slow and short runs since Newport, I paced fast today at 10:01 for seven miles.  I guess I was excited to be out, feeling strong again, running in cool conditions with proper shoes.  I am happy to once again participate with this group.  They have become my running family.

Something I have been thinking about with cooler conditions is that I am not the only one who suffers when the temperatures rise.  In fact, heat is a common complaint with my teammates and with other runners I know.  This got me to thinking that maybe I don't suffer from heat depletion because of my MS.  It stands to reason that if so many others also slow down as the morning heats up then maybe it's just another thing, like correct shoe size and even pacing.  I can let up on myself with the MS issues and just take it in stride with my fellow runners.  This does not mean that I would subject myself to unnecessarily high temps just to test my theory (i.e., you wont see me signing up for The Badwater anytime soon--or ever) but I think I can rule out MS as the culprit in my heat issues, at least for now.

That said, I am entering into this training session with a new attitude.  I am willing to let the MS just be another thing that exists in my life but that does not hinder my abilities and capabilities.  I am allowing myself to be just another runner--a runner among runners.

Here is the plan for the week:
Sunday, Prost 8K
Monday, rest
Tuesday, 3 miles
Wednesday, 5 miles
Thursday, 4 mile trail run
Friday, 7 miles and Yoga
Saturday, Biking and Yoga (maybe)
Sunday, Joe's Team 8 miles

If you want to read other blogs by runners also training for The Oregon Marathon, click this link:

Official Oregon Marathon Bloggers

If you want more info on Joe's Team, check out the Facebook page here: Joe's Team

Here's our team picture from Newport, taken by legend Michael Lebowitz of the LongRun Picture Company:
That's me in the front, second from the right just next to Jeanine Miller. 



Tuesday, June 10, 2014

Courage and Honesty

Monday after the Newport Marathon weekend, I had my last appointment with my neurologist, Dr. Lippincott.  I bought him a copy of Wild, From Lost to Found On the Pacific Crest Trail, by Cheryl Strayed.  I wanted to send him off into retirement with some light reading (har har).

What is it about this book that speaks to me?  I have bought it for so many people now.  I tell everyone I can that they should read it.  Maybe it is her actual journey, her struggle.  Maybe it is the transformation that takes place over this very measured and deliberate period of time.  Maybe it is just a book about a lady that finds a need to go out and do something unexpected and she actually does it.  Regardless, I'm glad Strayed found the honesty and courage to write it.  I'm even more glad that she had the courage and insanity to have her trek out there in California and Oregon.

Running a marathon with an unknown variable like MS is like that, in a way.  Courage and insanity to actually do.  Courage and honesty to tell the tale.  I take no pride in what I recounted to you in my struggles in the Newport Marathon, and yet, I told you.

So, book in hand, I went to bid farewell to my favorite neurologist, the second brain doc I have witnessed retired since my diagnosis.  I was so sick when I first started seeing him; the interferon slowly rotting my skin where it went in, and squeezing me senseless with each day I stayed on it.  I commend people who have stayed with their medication for many, many years.  Dr. L took me off of injections and gave me the opportunity to try something else.  My body responded by running and I have been running ever since.  My diet has slowly changed to fit my activities and my spirit has been smoothed by the rough roads and bumpy trails I have skimmed along in so many different shoes I have now lost count.  Dr. L gave me a chance to at this thing I have loved.  Running.  And there I was, offering him in return a send-off gift of courage and insanity; of courage and honesty.

What I wanted in return was honesty from him.  What I was afraid of most of all was that he would say--of my Newport experience and running in general--that I was using up all of the good mobility that I had left, spending it like a drunken sailor in port for one night, only to regret and need it a little while later.  My Newport experience had erased the phone call from his assistant the week earlier saying "no new lesions on your scan."  Instead, I interpreted that as a different form of disease progression.  What he said instead was this (and he says this just about every time now):

"I think we, that is to say you and I, have paid close attention to your disease and to you.  I think this far out from stopping the meds..." here he paused and looked across the room at Dave and then back at me.  "How long have you been off the injections?"

"Four years," Dave answered for me.

"Four years," I echoed.

"Wow, that's great!" The doctor emphasized his enthusiasm for my sake, knowing that I often doubt how well I am doing and have done.  "Some in my field have even speculated there is a benign form of MS and maybe that is what we are dealing with here. Of course, how can we know? In fact, many people, even those on very strong drugs, still continue to have exacerbations, and who's to say you wouldn't had you continued.  There's is no way of knowing with MS.  But you have done exceptionally well." (Of course, I paraphrase here, but my husband says I got the gist).

He was smiling though and nodding his head in a way that I knew I would miss once he retired, confident and courageous when I did not feel it just yet.  He continued.  "You will continue to get your scans and continue to do your running and we'll see.  But I have no reason to think that you will have any sudden and serious negative effects from your disease...anytime soon, and maybe ever."

I know it's not a cure. I know he did not (could not) proclaim me well.  But I did know a little honest hope then in that moment.  And that moment was all that mattered.

Here's what else I know: I have not had any significant changes in my lesions in my brain or spine in eight years.  I have also not experienced any exacerbations since coming off of the injections four years ago.  Instead, in four years, I ran three marathons, seven half marathons (Dave and I are not sure) and countless 10ks, 5ks, and other distances, not to mention the training, the cross training, and the changes in diet and attitude.  In all that time, something has been working.  Something has told my immune system to stop attacking my brain and let me be.  Maybe it is just for right now, but I'll take it.

This is my trek.  This is my journey of self discovery and healing and it would be selfish if I didn't tell you how, or why, or even share my setbacks, as painful, embarrassing, as uninspiring as they may be to me.

Honesty.  Courage.  One more step.  This is my need to go out and do something unexpected and you are my witnesses as I actually do it.
 The Oregon Marathon
The Oregon Marathon logo

I am now training to run The Oregon Marathon on September 13th in Mt. Angel.  Three months to go!  Please check back to see how it's going.  Better yet, sign up and run with me!  http://www.theoregonmarathon.com/

Thursday, June 5, 2014

Newport Play By Play, One Step at a Time

Hello Bees!

Here's my play by play from the Newport Marathon last weekend.  I picked up my packet at the Embarcadero, got a quick hug from my coach Joe Henderson, and even took in a few extra pointers from pacer Jeff McKay.  Then, off to our hotel to settle in. Across from The Waves, we loaded up with pasta at Darcy's condo overlooking the ocean and beach.  Stephanie joined us a little late, but she got there just in time for dinner.  Darcy had made a lovely lasagne and salad and there were treats and bread.  I made...plain wheat pasta.  It was just perfect.

That night, I felt content and confident, almost like nothing could stop me.  I was hydrated and strong and invincible!  I am not sure what went wrong. 

You know how some days you just have a bad running day?  Newport turned out to be that for me.  It started late the night before when I found I couldn't sleep.  I was actually a little over hydrated and had many trips throughout the night visiting the bathroom and regretting my last chug of water.  By the morning, I was so keyed up that I wondered if I had slept at all.

I met Darcy at the curb for the trip to the start line and we talked about how we slept (or didn't).  Her husband Lloyd commented on how warm it was and I took note.  I thought about leaving my jacket, but my pockets were loaded up with Gu packs and chocolate covered coffee beans and I did not want to rearrange everything.  I decided if need be, I would tie the jacket around my waste.

When we got to the finish line, I met up with Jeff McKay again.  Jeff was the 4.5 hour pacer, my goal for finishing.  My last PR was 4:49 and I had trained pretty hard from the McKenzie River Half on, so I figured it was in the bag.  Soon the gun sounded and we were off.  Steph was also pacing for the 4.5 finish and she and I were orbiting Jeff like happy little moons.  We went around the charming little town of Newport.  Jeff let us know about the turns and curbs and we followed along like good little pigeons.  We passed under the marvelous bridge at Newport, made our way along the waterfront and marina, passed the Yacht Club, and Jeff pointed out where we would soon be finishing. Then we were off along Yaquina Bay.

This is where everything I had been reading on steeling myself against the distance would hopefully pay off.  I felt pretty strong, but I did notice right away that it was hotter than I expected.  It was also humid.  And, to make matters worse, the street we ran along was so caddywhompas and off camber that my left knee was starting to feel it.  I thought about slowing but was afraid if I let my pacer go, I would not regain my nerve.

There is a negative psychological impact to being in a run and having everyone passing you.  The opposite is true if you are in a run and passing a lot of people.  I experienced the latter in Portland in 2011 and earlier this year at the McKenzie River Half.  I did not want to have the negative version of this experience just then, especially not so early in the run.  Later I would regret not backing off.  The other mistake I made was not walking at water stops.  In all of my past long runs, both marathons and half marathons, I made it a point to walk at the water stops.  Now I thought if I walked I would lose my pace group and to me that spelled defeat.

Then, disaster hit at about mile 9. I had to pee.  At first, it was just a mild nagging, but as I ran along each step brought a bounce to my bladder that slowed me.  We had just passed a porto-let and I was starting to look for a squat spot (sidebar: I realize this is crass, but there is no other way to tell it).  With all of my bouncing along--and I assure you I hardly do bounce because of my Chi Running training--I slow, the pace group getting further and further ahead of me.  Finally, I came to another water stop and they had no bathroom.  The course marshal said there was a stop just a little ways ahead but duty called right then and there and I ran behind a parked truck (thank god there was a truck there).

I wanted to include this horrible part of my story for a few reasons.  One is that I hardly ever have to go on a long run.  I have read that when you are in on a long distance, your body will often turn off certain mechanisms in order to get you through your task.  This was not the case for me that day, as it had been on so many other runs (including both of my earlier full marathons, having never stopped once!)  The other reason I bring this up is that once I started running, the physical distraction of having to relieve myself now removed, I realized how hot I really was.  I also felt the chafing start under my arms.  My husband was at the half way point with a new shirt and a group of cheerleaders (my kids and Darcy's family) but I would have to get there first; and if you've read any of my past blogs, I have a very hard time running in the heat.

Just to clarify a bit more about the weather conditions, it was not traditionally hot, no.  Instead, it was mildly humid with a headwind gusting in mighty bursts.  And, of course the sun came and went, popping out from behind a cloud and sucking my energy dry.  My pace slowed and then stopped, turning into a defeated walk.  All the while, teammates passed smiling, encouraging, asking if I was okay.  I feared I was not.  I wasn't even sure I could get to the halfway point.  How is it possible that on the training for this very marathon I had my PR in a half marathon and yet here I was crawling around the off camber road, knees weak and head light.

Fear festered turning into the thing that grips my chest when I think my MS is winning.  But just then the clouds moved in and the energy came back. Before I knew it I was coming up on 13.1.  There was Dave and all the kids running out to meet me.  I changed my shirt, drank water, removed the jacket from around my waste permanently, and then I was off.  I felt fresh and rejuvenated.  I might not get my PR but I could at least get it done in under 5 hours, and that would be something.  That became my new goal.

By now, much of Joe's Team had reached the turn around at Mile 15 and were headed back.  I saw lots of the team, waving, exchanging encouragement.  Then I saw Jeff McKay, our 4.5 hour pacer.  He was solo, all of his little moons had fallen away.  Stephanie passed a little while later and she looked great.  I was so excited for her, her first marathon!  I thought of all the miles she and I had put down together and I imagined how it would feel for her to cross the finish line.  Then, the sun came out again and stopped me in my tracks.  As this happened, I realized I had to go pee again!  By now, the turn-around point porto-lets were in sight and so I jumped into one.  Once inside I made the mistake of sitting.  I never sit in those things, even the cleanest ones, yet, there I was sitting on the seat and relishing the rest.  I could feel how much my IT Band ached from the tilted road, the sensation of a toenail coming loose brought a new pain, and the tingling in my swollen fingers told me I was having hydration issues.  I forced myself to stand and get back out on the road.

As I re-entered the stream of runners I realized that the 5 hour team had caught up to me.  They were encouraging and optimistic.  I remember Dameri from Joe's Team saying "come on, you can do it" and I did not believe her.  For the first time in the race, I did not believe that I could.  Here I thought about Joe Henderson.  Joe always tells the group of runners when we first start that he has only had one person not finish (or 99% completion rate or something like that) and I did not want to be the runner to change that statistic.  I pushed myself to run, but my toe ached and my legs hurt and I watched helpless and the the 5 hour group disappear around a curve.

Then it was just me.  There were a handful of people around me, pushing like I was to run when they could and offering each other encouragement when they could.  As I came up to 17 Miles, Dave was there with the kids, smiling and running along.  He gave me water and they walked with me for a bit then I told them to let me go because having them with me just made me want to walk more.  So they went back to the 17 Mile post and got on the shuttle bus.  the shuttle bus passed me and the driver slowed and asked if I could hear the cheering squad in the back.  I nodded and gave the thumbs-up. Then the driver got a very concerned look on her face and she asked" Are you okay?"  I did not think I was but I smiled and answered yes and she drove off.  I could see her face in the side-view mirror looking back at me for a very long time.

Now when I say that sometimes a run is one water stop at a time, one mile at a time, one step at a time, I never thought it would be as true as it was for me that day.  Each step was a new effort.  I tried to clear my mind.  I tried to let myself walk.  I tried to focus my breath, hearing the yoga's teachers voice reminding me in my thoughts.  Nothing was doing the trick.  To make matters worse (oh yes, it gets worse) the wind had shifted and I was now fighting headwinds and gusts again.  At least the wind had a bit of a cooling effect.  I noticed as I neared Yaquina Bay, I was running a little more.  The temperature was better but the pain in my foot was becoming unbearable.  At around mile 21 I saw a few police cars and some uniforms and I thought to myself, I could just tell them that I am done and they would drive me in.  I could sit, drink water, maybe even cry without having to catch my breath, but then I thought about my last blog.  I thought about Samantha.

I said I would do this run for her.  Now, how would it look if I turned around and told her that I couldn't finish this one.  Would the gesture still have value?  Would it mean something new to her?  Something defeatist and terrible?  Then I had this image of giving her my medal.  She was planning to come and visit the next weekend and I wanted to give her my medal.  Usually I just give my medal to my kids.  They think they're fun and cool.  But the image that had in my mind of giving Sam the medal was palpable.  I couldn't shake it.  As my attention came back to the task at hand I realized the police cars were far behind me and that I had started running again.  I checked my pace and I was back up to 10:30.  I slowed to see how long I could keep it up and I found a sweet spot.  My toe hurt, the IT was screaming, but I was running.  And I kept running for a while.

Some of my favorite games to play in my mind on a long run are counting my steps.  I can only count on one side otherwise it messes up my gait.  Forty-two, forty-three, forty-four.  I'll get to one hundred on one side and then start counting the other.  This worked as a distraction from the pain for a long while.  I kept my eyes out for the bridge.  Each mile post I passed made me feel renewed.  I was sure that my longest walks were behind me.  And they were, too.

I cannot describe the feeling that I experienced when I was at Mile 25.  I remembered seeing Mile 25 in Portland: Joe was there cheering and offering hugs.  Mile 25 in Eugene with Darcy next to me running me in, reminding me that I didn't have to be great to get there; I could finish even if I felt lousy.  Then I remembered my last mile at my first Half Marathon, I was with Stephanie Gray.  We were new friends and we were new runners and we were floored that we had come so far.

Before I knew what was happening, I was running uphill.  Newport Marathon has an uphill finish.  It is a long and slow uphill but I wasn't going to let it beat me.  I kept running.  Thoughts of walking crept in but people were cheering.  One person said "You inspire me!"  I wasn't sure why because I wasn't even wearing my "I have MS "shirt.  then I realized that just the act of completing a marathon is inspiring.  I am not related to anyone who has ever run so far.  I had only met a marathoner in my early 20s.  Until then I thought the activity reserved for post-Olympians and athletes.  Yes, what I was doing at that very moment was inspiring, MS or not.  And the fact was, I had done this three times!  I might limp across that finish line but it was close enough to see soon, and by God or grief I would get there!

The hill turned and I started to go down.  I had to watch my speed.  More people were cheering.  In the crowd at the bottom of the hill, I saw my husband and girls.  Dave was waving and I motioned for the girls to come out on the coarse with me and run me in.  They did, lining up with me and pacing me to the finish.  I heard my name.  I saw my coach.  Noises and flashes and sunlight. Then Joe said something about it being a tough run for many.  I clutched the medal around my neck and thought of Sam as my family moved me to the shade on a nearby sidewalk.  And then I collapsed.

As I lay there staring at the overhang, my thoughts swirled.  My girls brought me bananas, water, Gatorade, something bready (or maybe I am thinking about things that came later).  Then Stephanie was there.  I congratulated her and watched her looking around and taking it all in.  Then, my leg cramped, which had never happened to me after a run so I knew I had hydration issues.

What I took away from that experience is to not allow my instincts to be overruled by fear.  It would have been fine for me to walk at the water stops.  It would have been okay to slow down if` I thought the weather might become a factor.  Maybe even use a different supplement.  For all of my past long runs, I have sworn by Shot Bloks, Margarita flavor because of its high sodium.  In fact, now that I think of it, I was running with an untested Gu I had never used before.  Also, I thought about new running shoes during a 19 mile training run and pushed the thought away.  That would have been a good time for me to invest in new shoes (listen to the subtle language of your feet before they start screaming at you!)

But I also learned that I can do things even when I am fairly certain I can't.  I have the best darned running team in the Pacific Northwest!  My family is the greatest cheering squad and pit crew to ever grace the sidelines of any sporting event ever.  And, I want a do-over.

So, now I'm going to train my butt off and hit marathon number four on September 13th with Joe's Team at Mt. Angel, Oregon for The Oregon Marathon.

But, of course, more on that later...

Here are my girls running me in at mile 26.05

Steph and I standing (barely) in the winners tent exhausted but happy

Friday, May 30, 2014

Keep Flying My Little Bee!

Each time I have had the chance to run one of these epic 26.2 mile runs (some folks call them “marathons”) I like to dedicate the distance to someone.  This serves multiple purposes.  First, it gives me the change to pay homage to someone I hold very dear in my esteem.  Next, it gives me a focus as I grind out the tougher miles.  In the past, I have thought of my girls, my dad, even my sister and my MS team (half marathons included).  Tomorrow, I will run for my niece, Samantha Zimlich.

Let me tell you a bit about Sam.  When she was born, I was literally in the hospital too.  I had to get a pass to go over and visit her and hold her.  My sister was a single mom from the gate, so I also had the glorious opportunity to help bring Sam into this world (though I assure you my sister did all the hard work). At one point I got to hold my sister’s leg in the air as she pushed through a contraction on her side.  How she did that I could not tell you.  To this day, I envy her strength and determination.  But I digress. This is about Samantha.

Suddenly, there she was, all pink and new.  She was lying on the metal tray where the nursing team cleans babies and I snuck over and held her little foot for just a second saying, “Hello bug.  There are some people here who are looking for you.”

From that moment, I was smitten with this child; a beauty in 1,000 ways!  She had red hair from birth and the sweetest disposition.  She was a curious toddler, indulging me in hikes through the chaparral, examining snakes and flowers as I finished my associate’s degree in Southern California.  She was my excuse for being childish and childlike during a time when I had to hold three jobs to pay for school and make ends meet.  I relished the chance to be silly and fun.  Later, Samantha would become a teacher to me, showing me how to work my camera and how to be a friend to younger girls and even how to parent.  She taught me about music and the internet and Facebook, though it once was Friendster, Myspace, Tribe.net.  These days, she teaches me about reading.  Sam’s a bibliophile reading everything she can get her hands on and making the best book recommendations I could ever hope for (Thank you especially for The Fault in Our Stars).

Here’s something else that is great about this wonderful young woman: she visits me. Sam buys airplane tickets and comes up to Oregon from 1,000 miles away just to spend time with me.  I don’t have many people in my life that have done this solo and Sam has done it many times now.  And, she enjoys it.  I do too.

 And here’s another thing, Sam has never shied away from my MS.  In fact, she is often the driving force of the team in San Diego.  She asks me questions about my condition and she keeps up on how I am doing.  I love that she does.  What a great woman she has grown into.  I am proud to be her aunt and her friend.

On Sam's last trip here, she had a special gift for me.  She rolled up her sleeve and showed me her newest tattoo:


See, the bee is my symbol for overcoming impossible odds, as most apidea (bee family) should not be able to fly by all of our laws of physics, but they fly anyway.  The bee has become my spirit animal inspiring me to overcome impossible odds like running three marathons while balancing the symptoms of MS and raising a family, etc.  I have often talked about this here in my blog and I even address my readers as My Bees and am fond of saying "Keep Flyin!"  But the thing is, I had no idea that anyone was paying that much attention to this blog, to my ramblings, to my plight.  Sam is.

Samantha Zimlich, I could not be more proud of you.  You are one of my very most favorite people in the entire world, deserving of each superlative that I have just included ... and more.  I love you with my entire being.  I am grateful beyond words for having you in my life.  Tomorrow when I struggle (and I know I will) you will be my wings.  You will be the force that carries me to the finish.  Thank you for believing in me.  Thank you for being in my life and for changing it always for the better.  I love you so much.  Keep flyin!

(No time to proof read, I'm off to Newport!)

Here are some other pictures of this wonderful little bee...

Sam and I about 15 years ago at Tio Leo's

Sam came to visit me for her sweet 16!

Prom night!!  What a doll!!

 Samantha with Emily Huntoon and Suzanne Tench-Zimlich at the MS Walk in San Diego (Bees!)

On her last visit with her Mini Me (AKA Gabriella)





Sunday, May 18, 2014

Pacing Me Through

It has been many week since my last update, months even!  And yet, the training for the Newport Marathon continues.  We are waning now, finishing up these 17 weeks with a fun run next week for just one hour, along with a team picture and maybe even a trip to the local coffee shop (just like EWEB!)  I have learned again that I start too soon, that I can be paced to go much farther than I ever would give myself credit for, and that the support of those around me is invaluable.

Now, if I might add a bit from the disease front, I should like to say that I have my annual MRI tomorrow.  This comes in the midst of my training and is filled with the same trepidation that I often have when facing this procedure.  It seems I am not fond of the IV and the tube and the combination of both.  I find small comfort in the iPod that will champion me through, as it has in the past, and also on many of my solo runs.  What an odd device to rely upon with such earnest!  But I digress.

The point of my bringing up the annual MRI and the MS is to say that I am once again faced with the fear that I will have results that are not in my favor.  But, of course, I always do this.  I always have this feeling of impending doom.  Here is the other shoe dropping, like a anvil on the cartoon head of my very fortunate prognosis.  This fear if not unfounded, and also has another layer.  I have been having severe allergies this year with our tree pollen.  I had ended up at urgent care at one point, shifting at the last minute to the doctor's office.  A call to the neurologist had me recounting the symptoms, all the while afraid to tell him that I had been over doing it in with the training. When we did finally talk about it, I was surprised at the conversation.

"Are you afraid that I am going to tell you not to run the marathon?" He asked.

I hesitated before answering, but I had built a level of trust with this doctor over the years and so I thought I'd better just speak plainly.  "Yes." I said, the answer echoing off the walls of the hall outside the office where I worked.  I didn't want anyone to hear my conversation.  Eveyone at work knows about the MS, but the talk with the doctor was private.  Besides, if he was about to tell me that I couldn't run the marathon, I'm not sure I could have kept it together.

"I'm not going to tell you that," his voice eased and I released my breath at his words.  Thank God, I thought.  He continued, "I think it's great that you are doing this.  This is not something that many of my patients could do, let alone are doing.  It's okay.  Keep training."  He went on to talk with me about the upcoming appointment and then he dropped the real bomb: "I'm retiring at the end of June."

Wait, what?

This was not good news to me.  I'll tell you why.  This is the doctor that took me off of the injections.  He even said that if I had been his patient when I was first diagnosed, I might have never been put on medication in the first place.  I panicked.  But, being the wonderful doctor that he is, he reassured me.  "Don't worry.  We'll talk about your care when you come in and I will make sure you are in great hands."

Another great release of breath.  Would I be okay?  I would have to trust him and trust that I would be taken care of by something greater than us both.

So, there I was this morning running with perfect conditions, low 60s, light off/on rain, being perfectly paced by Jeff McKay, an easy 10:15 for 10 miles out and around the beautiful Willamette River with friends and conversation, well fueled, rested and prepared.  Our longest training run behind us.  Only the fun run and the marathon before us on the horizon (besides my sols and tapers I would do on my own).  And there and then I thought to myself, yes, I do have MS.  I cannot change that fact.  But what has it been about if I have not been able to do something about how I have lived my life since I got that diagnosis so many years ago.  And look at me, I have done something about it.  I continue to do something --many things-- each and every day.  And now I am gearing up for a third marathon, countless other runs under my belt, optimisms abounding regardless of my fears.  And the helpers I have met along the way have been invaluable, not just those next to me on the running path but also those whom I have met along my life's paths. 

Thank you Dr. David Lippincott for pacing me through through the treatment of this disease, for your constant confidence and your wonderful care over the years.  I credit much of my positive attitude to your support and holistic practice of medicine.  You have made a fine career of treating people, not disease, and I wish you the very best in your best years to come.

Friday, March 7, 2014

Suzanne - Wonderful, Amazing You!

Top Secret Sister-In-Law has started her own team for the MS Walk team in San Diego.  I found out because she linked to my blog and I saw the extra hits being sourced from the San Diego website.  Sneaky! 

So, I thought I would return the favor and blog a bit about her, because she is pretty awesome.  Not only is she the mother of my youngest niece, and married to my favorite brother, she is also someone I count as a good friend.  And, in this last year she has really taken to running.  I love this about her.  She will be running her first half marathon later this year and she is always asking me questions about it, what shoes, how often I switch to new shoes, how I recover.  Her enthusiasm has caused me to pick up my own temp.  But isn't that the way it's supposed to be?

Recently, it occurred to me that it would be a great exercise to write about how other people how influenced my life.  Such an exercise would be beneficial on many levels.  First, it would give me the opportunity to reflect on gratitude, which is always advantageous.  Next, I would have the opportunity to really think about the wonderful people closest to me and how they enrich my life.  And finally, but certainly not concluding the benefits, I would be granted a small amount of time outside of my own head--brief, I know, but needed.

So, here is Suzanne.  She is a bit younger than me, though not too much.  She has a great sense of humor and a wonderful personality.  She is one of the kindest people I have ever met, and I have met Og Mandino!  Also, she is super smart, and I do mean book-smart and common-sense-smart alike!   Once I called her with an insurance question (a legal question) and she just knew the answer.  And you should see how she has her organized her life.  Wonderful!  Also, she is a great mom.  My little niece's name is Olivia and she is the dumpling to my apple.  Suzanne makes the best choices for Olivia, not always the easiest choices either.  She is patient and loving and nurturing.  I'm honored to know her. 


So when someone like Suzanne starts her own MS Walk Team (like she has done each year) to raise her own personal goal amount of funds and awareness, I have to pause and thank my lucky stars that there are people like her in the world.  Thank you Suzanne.  You are the driving force behind this movement.  Thank you for being you. Wonderful, amazing YOU!

Here is a link to Suzanne's MS Walk Team page:

http://main.nationalmssociety.org/site/TR/Walk/CASWalkEvents?px=9220396&pg=personal&fr_id=23499


Thursday, March 6, 2014

Orange Week 2014

I am several weeks into my marathon training and things are going well.  I feel like I am on target for the goal of 4:30.  I have been experimenting with new coconut waters and other means of hydration.  I have also been looking into the newest tech fabrics again, for cooling in the spring during warm runs.  We'll see.  But so far, so good.

I did run in Florida last week when we were there for my in-laws 50th wedding anniversary.  It was a perfect time for a family vacation and the event was beautiful.  It was not the best conditions for running.  The humidity was out of control.  This was also during the same time that Tampa hosts a huge running event called The Gasparilla Classic.  I am not sure how they do it, but I am going to guess there aren't many participants with MS.

That brings me to the subject of this blog.  March is MS Month and this year Orange Week is early.  What is Orange Week, you ask?  Well, Orange Week is when people with MS and our family members and friends wear orange or share oranges or orange food, pictures, memes and we do it with the m.o. of raising awareness about MS, the facts about the disease and the recovery of the disease.  This Orange Week, I learned something.  I learned that without disease-modifying therapy, about one-third of those diagnosed with relapsing-remitting MS will be using a wheelchair at 20 years after diagnosis.  I don't know if I believe that, or at least I am optimistic to remain within the other two-thirds (wink-wink).  Still, it is great to share stats and experience.  This is a time for us to do that.  Some of us do it all year long if asked ot not, and that's cool too.

Here's a few things I am doing for Orange Week.  I am wearing Orange every day in some small way, or maybe some large way.  I am running every day, except not on Monday because I ran 11 miles on Sunday and I'm following a training program.  I did partake in other physical activity, because I can and because it is a joy.  I will have logged 26 miles by tomorrow, with 2 more Orange Week days to go!

I am focusing and breathing, too.  Yes, on purpose.  

I am also trying to release anger as a physiological response and to move on.  I read recently that often we have a reaction of anger only to then feed it with our thoughts afterward like fanning flames on a fire.  It is better to acknowledge the anger and then move on.  This takes practice, though, and so I have been looking for opportunities to practice this. I find that something has caused me anger; a person cuts me off in traffic.  Instead of yelling out (they cant hear me anyway) I notice my emotional response and try not to judge it.  I simply acknowledge it.  "Wow, that made me angry!"  Then I try to let it go. I don't think, "What was that guy's problem? Didn't he see me? Why is his schedule/safety/etc. more important than mine?"  Instead, I think, "I can move in from this.  I don't have to judge this."  And I am finding that I don't either.

For those of us afflicted with MS, it is vital that we keep a healthy emotional balance as well as a healthy physical balance in all that we do.  I will be the first to admit that this is the biggest the challenge for me, but that does not give me the excuse to not try.  Practice in this way can help me to not internalize my negative feelings.  It can help me to reduce my stress.  And I find that I am much more relaxed and content.

So, this year if anyone wants to know what is the most significantly different aspect of my disease management now into my 9th year of diagnosis, I will tell them that I am most focused on my emotional well-being.  It is as important -- or probably more so, than my physical well-being.  Actually, the two are mutually dependent upon one another.  

Happy Orange Week!

 Photo from the Oregon Chapter of the MS Society
#showyourorange
#msawareness

 

Sunday, February 9, 2014

Another One?

So, I am going to run another full marathon!  Yep!  Newport in Oregon in May.  Should be a lot of fun.  My friend Stephanie and I are going to go for a 4:30 time, too (I am speaking of this as if I actually believe it can be done).

But, that is not the reason for my title.  No.  In fact, running another marathon is just another kick to get me back to the blog, and back on the road, upping the miles and downing the carbs.  No, my reason for this title is a bit of a bitter sweet bite on the inside of the cheek of another friend receiving her diagnosis of MS.

Now, I have received some phones calls and emails from folks over the years that have received their diagnosis.  I have talked to all sorts of people from those with pretty advanced Relapse and Remitting MS (RRMS) to advanced and progressive MS.  I know kids with MS and older people, too.  Everyone is at different levels of abilities.  I even get asked questions about neurology from people who have other diagnosis, rheumatoid arthritis, strokes, epilepsy, cancer.   Sometimes I get to share my experience on interferon with hepatitis-C folks (and am grateful for their advances, I can tell you that with much enthusiasm!)  But then, here's this story.  Something different; unexpected.  Not like I ever expect to get a phone call saying "I got my spinal tap results," or "My doctor says I'm in your club." But still.  Sometimes the news is more jarring than it is at other times.

Let me back up.  Let me tell you that I am ordained to marry people and I really love doing so.

No.  Let me start somewhere else.  Let me back up even farther.

Once, when I had first moved to Oregon, I was involved in helping to plan a party.  As with many parties, we needed ice.  My sweet friend Kami worked as a waitress while she went to school to become a teacher and her restaurant had an ice machine.  We went to her work and scooped ice to our hearts' contentment.  We bonded a bit in that time; me with my awkward new-person-in-town-throwing-a-party persona and her with her accepting-of-everyone knack.  She listened as I worked through my nervousness and she reassured me that she and I were friends, not in her words but in her easy manner and sweet way.  Ask anyone.  They will all say the same.  She is kindness personified.

So, fast forward.  I have been living in Oregon for ten years and who have I known the longest, longer than anyone else?  You guessed it.  Kami.  In fact, she and her husband (whom I married--a story I started earlier but blah, blah, blah) she and Travis came to support me in the first full marathon I ran in Portland.  Here we are "carb loading" at Slappy Cakes the day before the marathon:


Kami came and stood and cheered with Dave and the girls and Travis rode his bike around Portland trying to find me "whne and where" along to route to support me.  What a great couple.

Two Years ago they welcomed Dax, their handsome little man.  He is a darling, too. Just look:


And, life has gotten on with us.  We have all grown up a little bit over the years.  Kami has become a tenured kindergarten teacher and Travis teaches sports to kids (Travis is an amazing character all in his own, with his own chronic illness that he 'handles'--and he does, too).  These people are just about as awesome a family as you could ever want to know.  And they are good and loyal and sincere friends.  I am grateful they are in my life.  It doesn't matter how much time goes between visits, when we get together it seems like no time at all has gone by.  They have a standing invitation at my house, even if it's just to use it as a hotel.  They know this.  They have only come sparingly because they are busy and responsible and also considerate. 

Naturally, when I heard from Kami about her diagnosis, she did not want to bother me.  It is just like her to not want to put me out of my way or talk about something unpleasant.  I reassured her by telling her that I keep a blog about this "for crying out loud!  The more I talk about it, the better I feel about it."  I find that has been true for many of us with this diagnosis.  We like to talk about it.

MS is such a nebulous, individual disease.  How it effects me is totally different from how it effects anyone else.  I have never met anyone who has it just like me and I do not expect I ever will.  Yet, somehow I am reassure when I speak of it or write about it or email with a new friend about it.  I like the MS Walks because I feel empowered.  I make connections with others who have MS and we all get a chance to talk about it and walk and --hell, why not-- raise some money and awareness too!

So, this conversation I had with Kami was a few months back now, early December.  It started with a text that lead to a phone call. She was super tired and I could hear her exhaustion, like a physical weight, through her voice.  She was not her usual peppy and upbeat self.  She described to me the things that I do understand, the general way that this disease gets us, the fatigue, confusion, fear.  She told me about the scan she had already had and the tests that were forthcoming.  I listened and I kept thinking to myself how unfair it was for her and Travis and Dax.  I thought about how they have already had their hurdles with Travis's diabetes and how when God is handing out chronic illness, he needs to take these things into consideration.  They have a young son.  Dax needs his mom to chase after him, to play with him, to stay up late with him when he is sick.  But then I thought about the other side of this horrible condition.  The other side is healing...

When I was diagnosed, nine years ago now, there were only three different medications available and one of them was being held back by the FDA because of issues with fatalities in Europe.  All were injectable with horrible side effects.  The one that was selected for me made me sick three times a week and gave me horrible site reactions with bruising and sores.  I woke in the night with tremors and shakes so bad that Dave would have to hold me until they passed.  I was dependent on Tylenol.  Nine years ago, there weren't the many medication available that help combat fatigue and restless legs and numbness and gait issues.  I tell you, when I walked the booths at the MS Walk in San Diego last year and spoke with the many different drug companies, I was in awe at which parts of this disease are now specifically treatable.  And they are, too.  In fact, I feel like the world of MS treatment has the right idea about drugs.  Because there are so many different facets and nuances to each and every one of those diagnosed and how we experience MS, there should be specific drugs that target each specific issue.  It makes sense that when I talk with so many people who have MS, all with different symptoms and prognosis, that we should have many different plans for healing and treatment, and now we do.  At least, that's the current trend.  It's a trend I think we will continue upon also.  Why, just in the number and kinds of medications that treat RRMS itself, I have lost count.  Some are topical and some injectable and there's even a patch.

All of the talking is working.

As I listened to this young mother, hopeful for the growth and future of her family, talk about hitting this wall, I offered her the one and only thing that I could think of that has worked for me and will continue to work: faith.  Faith in a power greater than all of us, faith in our fellows diagnosed and the immeasurable value of their experience, and faith in the healing research coming down the pike that is making advances every day.  Every day.

I wish that no one else had to receive this diagnosis.  Maybe someday, they wont.  Until then, it will take strong people like Kami and Mackenzie and Ticky and Johnny D. to keep on showing up and talking about it and letting our doctors poke us and scan us and whatever it takes.  We are going to keep looking for solutions.

There will always be another one.



Here's Kami's rad announcement picture.  So brave!