Healthcare Reform: Don't Get Sick

I am back to life.  Back to running, back to energy, back to myself.  I had a flare in the 2nd half of 2015.  While it wasn't physically debilitating, it presented some interesting symptoms:

• All of my hair fell suddenly fell out.  I've never had a head of hair due to alopecia, but I have mostly had baby-quality hair that came and went, as well as body hair.  It all came out suddenly this summer.  Nose hairs, the little hairs on your face, everything.
• I got face markings: a rash that went from my forehead down the sides of my face and onto my neck/chest.  I also have redness and red spots on my knuckles.
• My voice got hoarse.  
• I got overuse injuries that wouldn't heal: a shin splint, my inflamed IT band, and one thing after another.  My body couldn't heal itself from the everyday wear and tears.
• I had an overwhelming sense of unwellness.  I didn't feel like myself, didn't have my normal energies or interests, and in general, didn't enjoy being inside my own skin.  

Somewhere around Christmas, I noticed that my face markings faded just a bit, and the body aches/pains subsided.  I've got the faintest traces of peach fuzz on my face when I do an extreme close-up look in the mirror.  I still have the face/neck/chest markings and knuckle rash, however, as well as a little of the voice hoarseness.  Fortunately, this is cosmetic.  Most importantly, I feel like myself has returned.  I feel well and happy, which is a huge relief.  I hope it sticks around.

Here's what I think happened:  Miraculously, I never suffered muscle weakness.  Instead, I think that the Polymyositis turned into Dermatomyositis.  What I felt was a flurry of increased autoimmune activity while that was going on.  I'm just glad it loosened its grip for the time being.

Although a blow came today with a call from the new rheumatologist's office.  I had been struggling with my current rheumatologist, who seemed to have some trouble helping me navigate this flare.  I experienced quite a bit of frustration with the way that it was handled.  It also turns out that he is dropping out of my insurance network, so the breakup had to happen anyway.  There are 4 rheumatologists in a 2-county area here.  I've already burned through one.  I went to the next 2, who are in the same clinic.  After establishing my primary care physician within their network, I learn that they have a 2 year waiting list to get an appointment.  Uh.  What?  I am blown away.  1) I am scared.  What are we supposed to do in the meantime?  What if I get sick again?  I don't know what to do next.  I can't keep navigating a system like this.  2) Why in the hell couldn't they have told me up front that it wasn't going to be an option?  I have been trying to switch rheumatologists for 10 months now.  The first attempt took 6 months, and I got a straight-up rejection.  Not taking my case.  This last attempt chewed up another 3.  More pointless co-pays that are going to result in rejection. 

And once again, I am lost at sea.  I feel absolutely helpless.  

Sitting duck.

Autoimmune face

My face is on fire!  I don't know if you can see it in a picture on the computer.  My face has been red during this "flare", particularly my cheeks and a swath on my forehead/eyebrows/eyelids.  It even feels hot to me, like a sunburn.  And acne!  Nice bonus symptom, there.  Just in time for the holidays!

Too much information:  no nose hairs mean constant nasal drip. Constant nasal drip means painful, crusty nose!

What the.  Seriously.  My freak show of a body keeps the fun coming!

Low-grade flare symptom #12: red eyebrows/lids & cheeks, and scaly, flaky acne. Gross!  

8 things I wish people knew about my disease

I saw this blog article on Facebook this morning, about some things people living with lupus think and experience, but that no one really knows about on the outside.  It spoke to me, especially during a time when I am feeling about "80% of my pre-disease self".  Many of these things really resonated with me, as lately it's been so hard to present myself as a happy, normal, working, vibrant person.  And then I thought of all of those parents and friends who love and support us with these realities in mind. As always, I am grateful for you.

Thanks for reading.

Feet in the Ocoee River, May 2015

October 2015

Whoa. So it's been a few months now with some symptoms.  Now, I know that many, many people with autoimmune disease have symptoms all day long, all the time, every day.  And it's a heroic feat to simply manage those symptoms day after day, week after week, month after month... and on and on.

But I've had some issues since around June.  I think I've mentioned it, but my hair (what I had, which was a baby-quality head of hair and peach-fuzz body/face hair) all fell out.  Stark.  Like, my face felt like I had taken a razor and shaved it clean off.  Reynaud's kicked in during the month of May, and I even had an attack in the month of July.  July!  I had a sensation of throat swelling.  I started getting nagging injuries that wouldn't heal, my muscles felt heavy, and my joints were sore.  And then there's the general sense of feeling unwell.  It was pervasive.  All-consuming.  And very mood-altering.  (I'm speaking in the past tense as if it's all cleared up.  Not quite, but I have been feeling a bit better...)

I spent quite a bit of time and money seeing specialists (yes, my Rheumatologist actually had me see a Dermatologist... to tell me that I had alopecia... which I've had since I was 8 years old.).  I switched primary care doctors in order to get a better grip on my perception of control.  I went through weeks (no, months) of trying to navigate the system, figure out what I should do next, being told that no rheumatologist in town is accepting new patients, etc.  Feeling like garbage every day.  Finally, a bloodwork appointment rolls around.  And the biggest frustration?  My CPK was normal.  How am I supposed to validate my symptoms without a diagnostic?

I am either experiencing some overlap symptoms from related conditions (lupus, scleroderma), or I am having early signs of developing a more encompassing issue like mixed connective tissue disease. The most awful thing is that there is no way to know and/or prove it clinically.  When I told my doctor about these symptoms, he said, "How can you be sick? If you're sick, then why is your CPK normal?"  How do I respond to that?  I'm not sure.  Maybe it doesn't matter if he doesn't pile on the diagnoses... maybe he's saving me from having a laundry list of pre-existing conditions.  Would it matter in my treatment plan anyway, whether I was diagnosed as having "polymyositis" or "mixed connective tissue disease"?

I think I would like to switch doctors, but it's not as easy as it sounds.  My first choice isn't accepting new patients.  There's one more option in town at the local hospital.  What if it's worse over there?  She doesn't know my history or understand that I have to run. I have to.  If I submit myself to that process, and don't like where it's going, then what?  It's scary.

I have been feeling just a little bit better over the last week or 2.  I don't know if I'm just having a good couple of weeks, or if the symptoms are abating a little on their own.  I'm glad for a little relief, but there are fewer answers than ever.

Ok, so what was that about?

That last post came out of nowhere, right?  Well, so do autoimmune symptoms, sometimes.  It's really hard to draw the line between the 78th day of a bizarre symptom (just some abnormality that is ok to remain unexplained and probably goes away on its own) and the 79th day (when you decide it's an autoimmune thing and start to panic).  The big difference is that when you're in "ok, it's autoimmune and time to get help" mode is the DOCTOR PARADE.

I have come to hate the Doctor Parade more than the symptoms themselves.  For example, if I point out that my alopecia has become the most severe that it's ever been, and that it happened fairly quickly, I will get referred to a dermatologist, who will tell me that I have alopecia.  Great, thank you.  Repeat this sequence with the rest of the symptoms, and we're finally ready to address this as an autoimmune issue.  Like, 2 months and $1,000 later.  

And what makes me feel powerless in this situation is that I DON'T KNOW if this is the normal or correct response when I show up in the rheumatologist's office with a few new symptom flare-ups.  Do I seek a second opinion at the risk of delaying treatment even longer and complicating things even more?  Can I even handle one more specialist appointment without completely losing my mind?

  

Thought much appreciated, folks.  Thank you for reading...

But you don't look sick...

... which is the 5-word summary of life with Autoimmune Disease.  No, fuck that.  AI doesn't deserve capitalization.  It's not fair.  I have been feeling symptoms since late Spring, and I'm finally starting to crack, mentally and physically.  Not a flare, just a slow burn of symptoms that have ground me to a halt.  Not a literal halt, work is fine and activities of daily living are intact.  Symptoms started in late spring when I got injured (again) with IT band syndrome.  I started getting Reynaud's hands in May (May?!).  All of my hair fell out, and even small peach fuzz on my face.  I have a lump in my throat that is noticeable when I swallow and talk (I don't know if that's thyroid or just some esophagus swelling).  I have dry nose and a weird rash around the edges, and my lips are dry scales. My back tingles often.  And all of that is livable.  (Except the IT bands.)

This picture is dated May 1 on my phone.  May!  

But the mental effects are something like this:  

1) I am not myself.  I don't feel sick, but I also feel a distinct departure from my well and true self.  AI is as much of a robbing of your identity as it is a disease.  

2) With that, I transition to the sideline, the bench, of life.  I have 2 parallel lives... the one that I should be living, that I would be living.  And then the actual present.  The one where I lay low, put things on hold, and wait for time to pass. 

3) Not wanting to be around others is a hard thing to explain, but it's a palpable symptom.  I don't know what it is, I just don't want to engage. It just isn't me out there.  I can't explain it. 

3) My own head is a chasm of emotion, self-pity, fear, and desperation.  It's too big in there, too deep. I am completely self-obsessed.  It's hard to think about anything else.  

4) I'm not fatigued, like tired or sleepy. But there is a kind of fatigue present.  Fatigued of AI, I guess. 

I have to give up my spot as a pacer for the Memphis marathon soon.  I haven't done it yet, I was trying to delay as long as possible with the hope that I might bounce from this in time.  I'm trying to reconcile from being heartbroken over it, and then getting a grip on myself and putting it into proper perspective. 

Summer or leave it

Hot and hot.  That's how I feel during summers.  I don't know if this a thing, but I feel like my health blips always come in the summer.  Is that common?  It's never anything drastic, just an increased feeling of difficulty.  My IT band injury always acts up in the summer. I'm more fatigued in the summer. I could probably take a nap every day after work if I let myself.

I'm up to 5 miles of running since being down and out with another IT band flare-up in May/June. Whatever I did to get back to this point, I hope I keep it up and keep this thing moving in a positive direction.

Running near the Ocoee River in May. 

St. Jude 2014

Marathon weekend! This year did not disappoint. I was ready for a good event weekend, since last year's was cancelled due to an ice storm (!). I was on the pace team at 3:45, so I had a little bit of nervousness leading up to it. 3:45 means that I have to train, and then pray for light winds and a temperature under 65 degrees.

Making some new pace team friends at the expo.

Got into town on Thursday and did pacer booth duty at the expo. Had dinner with my ultrarunning friends at Wiseacre taproom and then Cafe 1912 (when did Memphis get so hip?), and felt so at home. I love this weekend. 

Friday saw an absolute monsoon. It rained all day, hard. And thank goodness, I'll take it. It kept us inside and rested, and got the heck out of town in time for a dry, yet cool and cloudy marathon day. 

My best childhood friend had a 9-year old son who was running his first 5K, and I wanted so bad to see him on the course, but it was too chaotic and crowded around Autozone Park, where the pacers were meeting. We took a quick photo, stripped down to the necessities, put on cheerleader faces, and walked out to the corrals nice and early. It gets real pretty quickly in the corrals, as you realize how much of a target you are. People start to gather around you... most want to talk, want a course preview, what your favorite marathon is, where the toughest hill is, etc. It's tiring to talk so much and be a social facilitator before you even start (in a good way, of course!). Some runners just stand there and look at you, which I find to be even worse. Their eyes are pleading, "no pressure, but I'm scared out of my wits right now and I need your help to do this huge, life-changing thing that is going to hurt so much and we have no idea what is going to happen, but please... just, please." 

The weather was perfect. Low clouds, cooler than expected temperatures, but not cold. Some wind, but the way that the course is laid out meant that it was only in your face about a quarter of the time. Brian, Shannon, and I ran together the whole time. Shannon was an alternate for  a range of times, but somehow everybody turned up healthy, so we had an extra, and we were a great team. Aside from having to briefly stop the runner traffic for a house fire on East Parkway (!), the day was smooth for us. We were a little ahead of pace, but the runners who had settled in with us seemed able to push ahead when we started to slow down to get back to pace. Inspiration can be found in many places, but one sure way to feel the best of life is to watch somebody push outside of themselves to meet a finishing goal. When we finished, I felt a sense of mission accomplishment, and I know that my partners shared that pride. 

Thomas got a great pic around Mile 23. I had a quiet period in the middle of the race, but perked up in the later miles.  

At Wiseacre for the second time in 3 days.

Went back to Wiseacre and Bosco's (again) afterwards and shared stories from the day with my friends. John had BQ'd, so he was happy. Miranda had finished her first marathon, and Scott took 20-something S-caps.  I love this.

My parents were in town, and I saw them for dinner on Saturday. Went to CTK for church with my best friend and her family, and then to their house for her son's birthday party. Said goodbye to my parents and headed back towards midtown, where everyone was at Lafayette's Music Room for what turned out to be an out-of-this-world show from a local brass band. Seriously, Memphis is happening, y'all.  It was one of those weekends that I didn't want to end. So good to see old friends and make new ones. Until next year...

Unexpected Extraordinary

Being part of an ultra event is paradoxical. On the one hand, it's a very simple concept... you run through the woods for a long time. That's it... just move forward.  On the other hand, something big happens within people and between people that is very, very deep and moving. I don't even know what that "something" is... I've tried to put my finger on it, but it's not tangible.  All I know is that you go into the woods, and at some point you come out of the woods... but there's an entire universe in between.

It's Traveller time. I chickened out, but had some friends from Memphis who were hitting the starting line. John and I went down to be part of their crew/pace team. We met the group at Copperhead aid station, at mile 48, which is the first place to pick up pacers. The foursome of runners was still together at that point, and when they came in, I headed out as a pacer. I was running with Lauren, who I knew the least well out of the group. That changed. 

A few miles out of Copperhead.
If you look hard, you can see the "50" sign.

The easiest part of the course is between the Copperhead and Turnaround aid stations, and as we ran, we talked. As we talked, we somehow started pulling away from the others.  Now, the pacer's job seems simple enough: keep company and make sure that they are eating/drinking and staying on course.  And that's what is going on most of the time. But a great burden on a pacer, and the most important thing, is to make sure that they are not sucking their runner out too fast, or on the other hand, not holding them back from their best.  Where is the balance between a finish that is more comfortable but less satisfying, or a "go for it" finish that turns into a dnf?  Lauren looked smooth, confident, and brave, like she was ready for this. But was it too much?  Too soon? I really couldn't tell, coupled with the fact that I didn't know Lauren all that well and didn't know her running style and personality. What kind of shape was she in? How did she act when things got hard? Did she want tough love or more sensitive encouragement? So we ran on, all of this to be seen.

Thomas laying out drop bags at Copperhead

Back at Copperhead we switched pacers, and I drove one of the crew vehicles to Winona. By this time it was 1:00am and I got a chance to listen to the Cardinals in extra innings at Los Angeles.  They lost, but ended up winning the NLDS. It really doesn't take long to get used to the simplicity of things in the woods, so that when you drive the truck into Perryville at 1:00am and get an AM radio signal, it just feels so modern and metropolitan.  At Winona I took a brief nap in the truck, and got ready to jump back on course. I had barely turned off my alarm, got out of the truck, and set up the drop bags for everybody when Lauren came in, looking very intent.  She looked at me and said, "ready?"  Absolutely. Let's do this. 

There is a tough section of the course after the Rocky Gap aid station, which is billed as "jeep road", but it's more technical than that, especially at 3:00am.  This is the section where I get such a sense of situational absurdity. Everyone else is in their bed... and I'm listening to distant coyotes as I scramble up this hill trying to keep this runner from falling off the side of the cliff. Lauren was brave. She had the courage to sense a good day and go for it. And she grumbled a little through the last semi-technical section at miles 93-98.  But she never once expressed the desire to make the hurt go away by going slower or quitting. So we kept pushing, hard. It felt downright triumphal to hit the last mile where the dirt road turns to pavement. She finished a solid 3 hours ahead of where I think she had intended, and it was inspiring. I think I cried, or at least felt it welling up inside. Something as simple as running through the woods, and yet I experienced such a range of human emotion that takes weeks and months to accumulate in everyday life. 

And best of all, I made a new friend.  :-)

Physical Therapy, or Why I Wimped out of the Traveller 100

All talk, no dance.  Yes, I am injured.  Yes, I also chickened out.  A little from column A, a little from column B.

B'gawk!

I hadn't actually signed up yet, but I really wanted to.  Sign up, that is.  What I ended up not being sure of, though, is that I actually wanted to run the race.

The main problem is that I told everybody I know that I was going to attempt the AT100 this year.  My running friends, my co-workers, random people from across the state that I happened to run into during training... it's hard to keep that kind of training under wraps.  Bailer-outers earn questionable reputations.  On the other hand, folks got their own lives to worry about. We'll all get over it.

And here I am nursing a bit of ITBS.  While it is frequently sore (in a low-grade, general way), it seemed worse and more acute than usual one evening while out for a powerwalk in my neighborhood.  Same story the next morning when I tried again.  So I stopped.  I decided that I was injured, set up physical therapy, and shifted gears completely.  And I felt...

Relieved.  

I'm glad that a sense of relief has settled on me, rather than disappointment. But I'm also concerned about the wimp factor. Why can't I pull the trigger? What would have happened? Nothing? Everything?? 

Instead, I'm back on the road for shorter distances and quality speed (which isn't really what we would call "speed", but hopefully that changes). PT seems to be helping. It's not cheap, but I'm happy with the decision so far because my own ill-devised treatment protocol is pretty ineffective, (which is the understatement of the year... see my 37 past posts about ITBS).  If I can get some good, biomechanically-sound advice, perhaps that will help me long term. 

Also... 

I've taken a good, hard look at my nutrition during the last 2 weeks.  It had gotten bad.  Training for a hundo meant that I practiced eating as much as possible before and during the run, and practiced burning that fuel as slowly and efficiently as possible. And as it turns out, I'm pretty efficient at storing fuel. So, a few pounds that settled in need to come back off, and I need to get as un-inflamed as possible.  Just take a little break, lay low, and re-set.  Get right, get healthy, and look forward to the next one.  We got this.

Make friends with the BOSU, and you'll never be alone.  

  

Somewhere around mile 30 on an Arkansas summer day

Scene:  FSR 132C, Ouachita National Forest. Early afternoon. Enter runner from foreground.  Runner comes to a screeching halt and stares intently at a stick in the road.

Runner:  Hello, Mr. Stick.
Stick:  Hello.
Runner:  Are  you a snake?
Stick:  No.
Runner: Are you sure?
Stick: Yes, I'm quite sure.
Runner:  Yes, you're sure you're not a snake?  Or yes, you are a snake?
Stick: Yes, I am sure that I am not a snake. I'm just a stick. This is very obvious.
Runner: Oh, ok. I'll go around, then. Please don't bite me.
Stick: *slaps forehead*

Later on down the road...

Runner: Don't kick that rock. Don't kick that rock.
Rock: Don't kick me. Go around.
Runner: Don't kick that rock. Whatever you do.
Rock: You can do this.
Runner: *thud* F@#k! What the ***? Ow!
Rock: *shakes head*

Good to have trail friends out there. 

The Midnight 50K

July in Arkansas, and it's hot. Part of the charm. A quintessential July-in-Arkansas experience is the Midnight 50K, now called the Full Moon, but it's hard to break the habit of the old days, so I'll keep calling it whatever I want to.  I have done this run since 2005 or so, when it consisted of a few idiots and some Christmas lights in the parking area at Lake Sylvia.  It has exploded in participants, being a user-friendly way to get into ultra distance (dirt roads, gentle hills, short drive from Little Rock, etc.).  I have missed it the last 3 years because, for some reason, I have had increased inflammation and disease activity during the summer.  Is that a common autoimmune pattern?  It was great to line up and head out for a long night run under a Ouachita Forest sky that I have seen so many times before, that feels like home to me.

Ouachita night sky

My friend AJ and I arrived at the campsite, set up, drank 2 beers each, and headed over to the start/finish at the girl scout camp, which was already a party in progress. I immediately made the rounds, hugs and smiles with so many of the folks that I have gotten to know over the years.  So good for the soul.  A 7pm start meant that the first few hours were very hot, with full sun for a little while. I had no expectations for this run, and was really happy just to be starting. My IT's (both) had been getting sore, and I have been wondering if I am going to have another typical summer mini-flare. I was prepared to drop to the 25K, or walk for a significant portion.  This run goes by pretty fast, because it's a straight shot up a dirt road with convenient 8-mile chunks... one aid station at 8 miles, then the turnaround, then the 8 mile station, then the finish.
The course is made up of constant rollers, although nothing with a grade so steep that it isn't runnable.  If it weren't so hot, this course would be very, very fast.

Glow stick and Copperhead juxtaposed. Photo: Will Landreth

I took it pretty slow from the start, and really wasn't comfortable on the run until I got through the first aid station 8 miles in.   I ran with Stacey, Jason, Cliff, and James pretty much the whole way to the turnaround, leapfrogging each other as we altered our walk breaks, and conversing about the running world.  I got into the 8-mile AS at 1:30, and into the turnaround at 2:55.  I have never done this event and not thrown up at some point during the run.  It's a joke at this point.  Well, my stomach was uneasy early.  By the turnaround at 16 miles, I had some mild nausea and stomach discomfort, and hoped for the best on the way back.  I pulled ahead of Stacey at this point and hoped that I could hold it, although I wasn't running as fast as I wanted to. My stomach discomfort reached a moderate level for pretty much the entire back half, although it was never so bad that I had to stop running for more than an occasional quick break or uphill. Around mile 27, it finally happened.  I felt the familiar urge, leaned over into the ditch on the left side of the road, and heaved whatever it was in my stomach that wanted out.  At that point, Stacey passed, asking if I was ok, but mercifully not dwelling.  That's always embarrassing, but we understand when to stop with concern and when to let the person deal with their issue in peace. I'm glad it was her who witnessed the vomit session, and not the group of 25K walkers that I had just gone flying past.  I could see their headlamps coming around the bend, so I cut myself short and scurried on to avoid a scene. It wasn't long after that I passed PT, who was walking a downhill. I asked him the same question that Stacey had just asked me, and he remarked that he needed new legs. I didn't feel so sorry for myself after that, as I was still running. I had to repeat the vomit sequence again just past the 5K to go mark.  This time, I was a new person after the upchuck.  The nausea was gone, I felt amazing, and I was ready to go.  So, I did.  That last 5K felt awesome, coupled by my love for that section of the course... it's where the Traveller course merges, the dirt road flattens out, the pines part overhead, and you can usually see a sky full of stars.  This night was too hot and hazy for stars, but the locusts in the pines were singing, and I enjoyed coming home to this stretch of the road.  As it turns out, I finished only a minute behind Stacey, and 2 minutes behind Deb. If my puke break had come sooner, I might have been able to catch up.

This finish line was a full-on party, and we stayed until the race clock read 7:30 elapsed, about 2:30am. A hot breakfast provided by the Williams Junction fire department hit the spot.  I had a really great time.

I'm happy that my body allowed me to run that event decently. I'm curious to see what is in store for the next several weeks.  I have a few events planned for the long-term, but nothing else that is coming up for the next couple of months.  Have a great summer-

Little Rock 2014

Holy Cow, where to start?

Saturday morning:  ran my warm-up in shorts and a t-shirt.  Roasted.  Pacer breakfast.  Easy livin'.

Go! time

Saturday night:  got interviewed by the local news about winter weather apprehension for the next day.  Scoffed and said that we could handle it.


Sunday morning in the hotel:  multiple people are bailing out of the race to get home for fear of getting stranded.  Fayetteville folks are already posting Sleet-mageddon pics and dire travel warnings from Northwest Arkansas.  No going back now. We have a job to do.  Still deceivingly warm and comfortable outside, but radar confirms that we will be getting socked.

Pacers still warm and dry. For about 1 more hour.

Gun time:  Starting to get chilly.  Wind is really kicking up... conditions are about to change, and fast. Kept jacket on for the start. Excellent decision. Rain came as we waited on the starting line. Temperature dropped 30 degrees in 3 hours. By the finish, the rain was sleet.  Hard sleet.  Hands defunct by mile 20... can't open gel, can't re-tie shoe.  Still trucking at the 3:55 pace that I was assigned on the pace team with no fuel and an untied shoe.  Had a couple of eager finishers who were going to make it, and I was happy for them. We ended up just a couple of minutes ahead of pace, thanks to the urgency of the course closures happening just behind us.  Thank God for the VIP tent, space heaters, and hot chocolate.

 4 hours later. So. Cold. Wearing at least 3 coats. 

And that's it.  I stayed a few hours too long at the after-party and had a hair-raising drive to Conway, where one of my best college friends was prepared to host me for the big snow-in.  I finally made it home on Tuesday afternoon.

The long winter

February 5.  The 3rd snow day in a row for those of us in education.  I don't mind it, but it throws havoc into my syllabus. 

I'm gearing up to lead a pace group again in the Little Rock marathon.  I was sick last year, and it killed me to miss it.  I feel a sense of responsibility on this one.  Every other time, I'm running for myself; and even if I've built the event up a bit, the only person that it ultimately affects is me.  The pacing gig is much more externally focused.  I am expected to enhance the race experience of hundreds of participants, and the pressure is exhilarating!  Any little pain or any break in training makes me hope and pray that I'm not going off the rails at the 20-mile mark.  I'm so looking forward to it. 

That said, my pesky left IT band let me run through the fall, building up to some decent mileage, although I'm nowhere near the kind of shape I have been in for previous seasons.  I ran the 25K ascent up White Rock mountain last weekend, and I'm afraid to say that my IT has been a little sore since.  It was fun to throw caution to the wind and hammer away at those hills without having to turn around, but now I'm holding my breath a little. 

White Rock 2014 start. I ran the ascent in 2:30. 

It's been a cold winter, too.  We've had quite a bit of pesky frozen precip that keeps refreshing itself with a fresh glaze of ice every morning.  (so it seems).  With the sore IT, it's just as well.  I'm going to say that my training is in the bank, and a little bit of an extended taper will probably be ok. 

Snow run at agri park Feb 2.  5 inches!

Nothing new on the PM front, although I had a bone scan to celebrate 5 years of being on Prednisone with no break (except a brief one that sent me into a flare a couple of years ago).  I was confident, but it came back on the borderline low side of normal.  I immediately went out and bought calcium chews, even though I have pretty good nutrition and do plenty of weight-bearing exercise.  On the other hand, my liver continues to flirt with the borderline high side of normal.  Hm.  I always feel like I'm squeaking just under my doctor's approval threshold.  I'm still on Arava, which still seems to be working.  I switched over from Methotrexate a few years ago after a series of flares that indicated a decreased effectiveness.  So far, I have not had a flare on Arava, although I have small fluctuations in my CPK every so often. 

I've been curious about digestive enzymes lately.  I don't think I've blogged this, but about a year ago I started taking probiotics, and it has made a difference in my hair growth.  I have a two-thirds head of baby-quality hair... not enough to look normal, but a definite difference between the alopecia totalis that I have had for so long.  I have been considering enzymes as the next step in approaching autoimmune disease from a digestive system angle.  I'll keep you posted...

Arkansas Birthday Fun

I turned 36 on Saturday.  Where is the time going?  I celebrated with two very fun and very, very different races:  The Chile Pepper Festival and Arkansas Traveller 100. 

(aside:  I had some kind of unidentified and undiagnosed flare back in July/August.  It was acute and very painful, rather than gradual and lingering, and was over and done with by the time school started.  I was very, very uncomfortable, and completely freaked out, but it turned out to be a false alarm.  The neurologist said that it could have been a random bout of Guillen-Barre.  The specific tests that I had for inflammatory markers were clear for anything more serious... not to say that there aren't other problems elsewhere.  A huge relief, although I apologize to my friends for taking my "alarm" so seriously.  Thank goodness for my support system.)

I heard reports of snakes in the water.  Snakes!

Back to the birthday.  I have always enjoyed either running or working the Chile Pepper.  It's a huge college, high school, and junior high cross country meet that has an Open 10K before the other races start.  It's one of the bigger community events, and so much fun.  Looking back at a spring/summer dominated by injury and illness, I haven't been running much, and was in no mood to register, which turned out to be a good decision.  I got up at 5:20 to get out the door for my 6:00am shift, and could see the lightning start to flash in the west as I rode my bike there.  We were just ahead of a strong front, and the 73 degree low was going to be the high for the day. Sure enough, 30 minutes before gun time, the storm hit and we were in a wait-for-it delay for the next 3 hours.  The 10K was shortened to a 5K, and I have never seen so much mud and water on a race course.  I have no idea how the rest of the day went, but I'm sure that it was a long one for alot of people.  I worked until about noon, and headed home to get warm and dry before setting off on adventure #2 for the day. 

MV taking care of biz at AT100

By 1:30pm, I was on the road to the Arkansas Traveller 100, a 100-mile footrace through forest service roads in central Arkansas.  My purpose was to meet a friend from grad school, run the last 16 or so miles with him, and then be a designated driver back to Fayetteville.  We (a friend from F'ville who was doing the same thing for another runner) shot for Copperhead Aid station, mile 52 and 64 on the course, giving an opportunity to see runners twice within a few hour period.  We spent the time chatting with friends who were crewing other runners that we knew... Mark DenHerder's whole family was there supporting his race, and he would go on to finish 5th.  Scott Rogers appeared soon after we did, crewing his wife Eunika, who finished her first 100 that day.  Ultra-friends are good for the soul.  Around 7:30pm I saw my buddy head through inbound looking very strong and making good time.  About then, the same system that had gone through Fayetteville that morning was bearing down 200 miles to the southeast.  I felt bad for my friend who was driving me down remote roads in the pouring rain to meet my runner at the last crew access point at Lake Winona.  It's not easy to get there, and she was going to have to go all the way back only to find that her runner had dropped.  I was at Winona for maybe an hour and a half, when Matt came in wearing every article of clothing that he had packed.  We took off, and he was moving purposefully.  Once his inertia got in motion he was ready to run, and there were a few times when I felt that I was downright pushing it just to stay with him.  Every time he dropped something (a much-needed glove that I never could find), or I lingered behind to finish up at an aid station, it was a tempo run to catch back up.  After the uphill jeep road to Electronic Tower aid station, the road smooths out and tilts down for some really smooth running.  There is one more technical section before the final 2-3 miles, and we just put our heads down and concentrated on minimizing rock-kicking and staying smooth.  Once we hit the final run-in that passes Lake Sylvia and eventually turns to pavement, I estimate that we were doing 8:30 miles.  He let me know that he was hurting, but I tried not to let him dwell on it, and he willinglly engaged whenever I would change the subject.  His words once we hit the pavement:  "Let's see what I've got left."  He finished in 22 hours, good for 10th place. 

It's good to do something totally out-of-routine.  How often do you run through the night with everything you need on your back?  I heard coyotes in the forest at 2:00am while completely alone.  I saw stars that I have probably never seen before.  I felt like the world was so much bigger than me and the petty structures that I allow my life to revolve around.  The world seems so large, and yet things seem so simple.  Pack light, stay warm, watch your step, and keep moving.  Ponder the absurdity of running through the forest at 2:00am.  Feel the cool night air on your skin and in your lungs.  See where the treetops open up to a clear sky full of stars that you've probably never seen, and realize that you would be missing it all if you were in bed back home.  Monday comes soon enough, along with the other 364 days of the year. 

Shakeup in the symptom log

Well, caught in the limbo between "not a big deal" and "potentially life-changing".  Which, as you know, is a huge variance.  At this point, I have no diagnostics.  I wish they were easier and/or quicker.  I hate the parade of specialists.  I also hate the process of ruling out everything else under the sun before you pinpoint that yes, you are more susceptible to autoimmune disorders and whatever you are experiencing is probably related. 

So before I even start...
Yes, I am doing yoga.  No, I don't need a new mattress.  No, I didn't herniate a disc in my back.  No, I didn't do this to myself by running too much. 

Symptom Log:
July 8:  Wake up in the early a.m. with back pain/discomfort.  Too severe to comfortably go back to sleep.  Thought it odd.
July 9-14:  Nighttime back pain gets worse, to the point where I am not sleeping at all during the night.  Up, down, pacing, stretching, yoga poses, crying, cursing from about midnight to 7am every day.  Feel crazed with pain and exhaustion.  Pain shakes off during the mid-morning hours, and aside from being tired and worried, lead a fairly normal day.  Sunset feels like a death sentence.
July 15:  Start to feel some leg weakness, walking to work gets harder.  Skin on legs and torso feels tingly, itchy.
July 16:  See rheumatologist.  Do full blood panel, urine, and back x-rays. 
July 17:  Feel like my lower half has less feeling than my upper half.  Can feel the dividing line of sensation/strength somewhere around my belly button. 
July 18-23 (present):  Nighttime back pain has stopped.  Loss of sensation in legs and lower half is as strong as ever. Tingly fingers, tingly skin on legs/torso.  Altered walking gait.  General discomfort. 

Of course I'm googling like crazy.  I've narrowed it down to some self-diagnoses, but haven't confirmed any.  Have not heard from my rheumatologist, which makes me question the inflammatory nature.  I would imagine that I'm headed to a neurologist.  I'm scared, but trying not to jump to wild conclusions.  Although I'll punch the next person who asks me, maybe I did herniate a disc and pinch a nerve.  But in my experience, if it looks like autoimmune disease, walks like autoimmune disease, and smells like autoimmune disease, why would it not be the first guess?  My rheumatologist told me once that there's really no benefit in piling on the diagnoses, unless it alters the treatment plan.  Makes sense to me, especially with the nature of health insurance these days.  However, I think one benefit is mental... knowing what I'm dealing with, knowing where my fight lies. 

Seriously, what next?  I'm starting to feel like Calamity Jane, here.  Trying to balance Type I and Type II error in my sensitivity to health changes is a serious mental game.  Friends tell me that it's fine, that I have every right to freak out, but I feel like I'm starting to bog down the environment with my issues. 

Have a good week.  Be nice to your friends who are working their way through hardships. 

ITBS, part III

Well, it's been a while since my last update in March, but I must say that nothing has been happening.  Nothing.  Because I'm on the couch again with IT Band syndrome, a miserable, miserable running/cycling injury that involves an inflamed band of connective tissue that runs between the hip and the outside of the knee.  I had a bout with it 2 years ago that ended in me having a PM flare and increasing my Prednisone dosage.  Not this time, though.  Or so far, anyway.  My bloodwork has been normal, so I've got no choice but to heal this thing the old fashioned way:  rest, stretching, strengthening, and massage.  It's exhausting.  I'm a little overwhelmed with the attentiveness to the daily rehab routine.  It would be so much easier to just run for miles and miles in the heat, up hills, through poison ivy and chiggers.  God, do I miss that...

A DNS and A DNF

The last day of March 2013 is one I'm happy to see.  I've had better weeks than the last 2 months' worth.  I ended up not starting the Little Rock marathon, where I was supposed to be a pace group leader (which is one of the most fun things I've ever done).  I came down with some kind of cold/flu the week prior, and as usual, held my breath to see how that whole thing would turn out.  The last few illnesses that I've had have turned out to be severe and rather lengthy.  Upon getting over my initial disappointment at giving up my job at Little Rock, I soon began to worry about carrying on with obligations past that, such as my big annual work conference (NIRSA), and another trail event that I had really been looking forward to. 

In hindsight, I'm not sure that I could have finished the LR marathon.  I have been noting some signs of inflammation in the last few months.  For those wondering, here is what I feel:  1) My period stops.  Too much information, but I've noticed that when I'm getting a regular period, I'm generally healthy.  When it stops, there is something wrong in my body.  It has been this way since I initially got sick.  I didn't get a period for a year when I had my first PM onset.  It was a welcome return when it finally started again.  I haven't gotten a period in 3 or 4 months now, and started worrying that inflammation was coming when I first noticed.  2) Of course, this correlates with winter, but I have been getting Reynaud's symptoms in my hands and feet more than I do when all is well.  3) My eyebrows/eyelashes had filled in a bit during the last year, but have been thinning out again in the last few months.  4) The skin on my lips, hands, and feet feels constantly dry and tight (again, this correlates with winter, but it's more than what I feel is a regular winter dryness symptom).  5) I'm prone to nagging injuries, primarily IT band syndrome on my left side.  My body can't repair itself from normal wear-and-tear situations.  The IT band has been like a palpable thermometer for me over the last few years... it seems vulnerable to increased inflammation and lets me know when things are running hot. 

So, I didn't start Little Rock, but I did start 3 Days of Syllamo, which is a 3-day stage race in north-central Arkansas.  My favorite trails in the state.  The weekend was warm, which was a factor.  But I really dragged.  I ended up dropping about 10 miles in on the 2nd day with IT band pain, but also because I was generally really having trouble moving quickly.  Legs were churning, but nothing was happening.  Two weeks later, I am feeling fine on a day-to-day basis, but I have been resting, working in the pool, and trying to draw back to the basics of attentive self-care.  I'm not sure what would happen next if turns out that this is a flare.  Running a few miles today to see what it feels like.     

So... a little bit worried.  Then again, I worry alot.  :-)  Just holding here for a bit to see what shakes out. 

White Rock

At the risk of evoking eyerolls from my more seasoned bretheren, I'm sometimes reminded that I'm getting older.  When doing an event for the 3rd, 5th, or nth time, I realize that a year has flown by even though it felt as if I were just there.  The annual events are ticking off, like miles in an effortless marathon.  I swear, I just ran White Rock 2012.  And yet there we were again a couple of weeks ago, at the Brannon Mountain Church about 40 miles east of Fayetteville, on a cool but sunny first Saturday in February.  Whenever someone asks me what I'm doing this weekend and I reply, "running White Rock", the initial glimmer of  recognition involves the massive marathon held in Dallas every December.  This run is the delightful opposite.  It's motto has always been "no fees, no frills, no wimps", which has ironically been printed on event t-shirts in past years (frill alert). 

White Rock is close to home, which is a refreshing change from the runs requiring a 3:45am departure ahead of a 3 hour drive.  This year I had some friends from Memphis who came all the way over just for the event.  Not used to herding an entire household out of the door in the morning, we came screeching up to the start in my subcompact Honda just as RD PoDog was yelling "Go!".  As we joined the jolly but small starting line, I saw that I knew about 2/3 of the field, and was instantly bombarded by friends congratulating me for making it.  I ran to the first aid station in full conversation with several folks that reinforced the feeling of "home" that I often get in this situation.  Running countless miles with others over the years has a way of turning the whole into far greater than the sum of the parts, and I am often touched at the sense of family that I feel in the presence of the running peers that I have gotten to know.  Back to that first aid station... I stopped for what felt like a full 10 minutes to re-organize myself since I didn't have a chance to do it pre-race.  A little embarrassing, but overall added to the relaxed tone of the day.  I have a couple of events in March that have a little more pressure on them, so I enjoyed a true fun run. 

I wish that I had a good picture of the scene at the top.  I am not good at remembering the mile-by-mile details of runs, but I do recall thinking that the course (still a temporary course due to closures on the original) doesn't seem to be "up" on the way out and "down" on the way back at all.  In fact, I swear that I walked more uphills on the way in.  Don't you like my non-scientific course profile?  Anyway, upon getting to the "top", I was beckoned in by friends from Fayetteville who were working the turnaround aid station.  I had seen these guys no less than 12 hours earlier at happy hour, then the after happy hour, and... you get the idea.  I saw my Athens-Big Fork running companion already plopped into a camp chair, beer in hand. After exchanging a knowing look that his race was done (me), and a look-who's-smarter thumbs-up (him), I wrote my name on the list at the overlook, said goodbye to my friends, and turned around. 

 

The run on in was fairly solitary, and I was ready to call it a day by the time I hit the last aid station.  Charile and Lou were making human arches for runners exiting their station, and again, I found myself regretting not having my camera.  I gave them both a big hug.  Arkansas ultras are what they are because of those two special people.  I was happy to be done.  The last mile is a flat open stretch of dirt road... doesn't it always seem to be that way?  I finished 12-15 minutes slower than last year, but that was ok.  I was trying to be slower and not thrash myself ahead of the LR marathon and 3 Days of Syllamo, which are starting to loom large in my near horizon. 

 

No fees and no frills, but good times and better friends.  See you next year.

http://www.arkansasoutside.com/19th-white-rock-classic-50k/

http://endurancebuzz.com/2013/02/21/white-rock-classic-2013-results-tom-brennan-and-katie-helms-lead-the-dash-up-and-down-white-rock-mountain/



Athens-Big Fork 2013

Happy New Year.  The first Saturday in January has been, for me, an occasion to head down to the Big Fork community center, just east of Mena in the western Arkansas Ouachitas for a trail run that heads south on an old postal trail over 8 distinct mountain ridges, then turns around and comes back.

Big Fork Community Center.  The running water (new this year) was a nice perk.

This year's run was actually my 5th consecutive... it seems to have become somewhat of a rite on my calendar.  The weather this year was perfect.  Last year we had thick fog that turned into actual clouds at the top of the peaks, it was incredibly beautiful.  This year's race day was cold, overcast, and perfect.  There was still quite a bit of snow visible from a foot of Christmas day snow 2 weeks ago, especially on the northern hillsides.  It made for some beautiful vistas when looking across the valleys.  I started the run with a friend from Fayetteville, and we ran together for about 90% of the day.  We found ourselves mixed in with a group of folks (obviously not from around here) who first asked about crew access points (none), kept taking wrong turns from which we called them back (although most people run bonus miles at some point or another), and delicately tiptoed through every creek crossing (there are about 30, all calf-deep thanks to the recent snow).  We separated from them at the Blaylock Creek aid station, 5 hills in and the fun run turnaround.  I think they eventually settled in at some point during the back half, and figured out that the rawness and simplicity of this run compliments the challenge.  This event definitely does a good job of breaking down the often overdone business of running into its most basic elements: nature, terrain, perceptiveness, and toughness.  Forget about the fancy stuff, it's just you and the trail today.

JP and I enjoyed a nice section after the Blaylock Creek aid station, and noted that hills 6, 7, and 8 were all pretty tough, especially 6.  I used to think that 15 was the worst, but I've changed my mind.  6 had recently been bulldozed to create a fireline for some forest fires that occurred in the area a month ago.  6 was also the most difficult coming back down (which is 10 inbound), and it was there that I realized my downhill running has gotten worse.  I kept the brakes on, and was very tentative in picking my way down on the technical sections.  Where did that come from?  Gotta work on that.  We cruised into the turnaround with a large pack of marathoners, probably at the heart of mid-pack.  I have a love/hate relationshp with the Texarkana crew that mans the turnaround... love their raucous joviality, hate that they are already enjoying their beers at 11am while I have 8 more hills to climb.  The back half does a good job of breaking everybody up, and I anticipated picking off some inbound runners with the large and tenuous provision that we could keep the wheels on and keep a steady pace.  Steady climbing, cautious descending, repeat.  I felt strong all the way through the Tatur aid station with about 4 miles to go.  I  was anticipating running the last hill, because it's one of the easiest (there are only a few truly runnable hills), but I couldn't seem to find the gas pedal again once I left the aid station.  Not that I didn't have energy... I wasn't bonking.  I just didn't have the control or footwork to pick my way around one more rock, one more root, one more ankle-wrapping thorny ivy.  The bottoms of my feet felt bruised, I was kicking everything in my path, and I was just tired of trail.  Once I got to the trailhead and back onto the gravel road, however, I was running with plenty of strength, which is refreshing if you can make it to that point and feel that way.  Apparently I surpassed my threshold for gnarly trail, but was fine with everything else.  I finished in 6:25, 17 minutes off of my PR (last year).  I think that I could have been a good deal faster with some better downhill running.

No-frills finish line

Done, sitting at the finish chatting, drinking a Modelo, and waiting for runners.  

The most pleasant part of the run was that my two very common issues (stomach bloating and leg cramping) never happened.  What did I do?  I drank Gu Brew, Gatorade, and Heed, took 3 S Caps throughout the run, and ate your run-of-the-mill aid station food (potato chips, oatmeal pies, gu, peanut butter crackers).  Maybe it was the ideal temperature.  Regardless, I felt great, and other than the downhill skill deficiencies, I had a strong run.  I dread it during the few days prior, can't believe it's that time again when I'm finally climbing those first few hills, and then enjoy it immensely once I get onto some of the higher hillsides and soak up the sense of place.  See you next year.