down, but not out

Today I got back on the horse(treadmill) and had to find out if there is any chance I can still run.  I did poorly and didn’t hit my goal but I made steps.  When something is in your blood so deep that without you are only a shell, you aren’t alive anymore.  When I am not trudging through mile after mile and sitting it out, I am not who I am supposed to be.  I may not be quick, or graceful, or lean, or any of that stuff that all the cool runners are, but let’s see them try to run with my condition.

Honestly, I thought I was done for.  In early November, during one of my really bad dystonia days, I managed to fall off the porch and my back has hurt so much I have been on the couch.  Falling like that is just part of the condition and I just have to live with it.  So I have spent two months in self pity as my back pain just got worse and I tried to accept the fact that I was done.  I really tried to accept it even when my back pain got to the point I had to start using a cane.  Yeah, that blows.

It kept on getting worse and I finally went to the doc.  I wasn’t expecting to attempt running again, I just needed something.  She saw how twisted I was and last week I started physical therapy.  I only expected to get my back straightened out somewhat, but no big improvement.  Let me tell ya, after that first visit, the next day my symptoms were out of control.  The same thing happened after my third visit.

Then there was today.  While at physical therapy, after he worked on my back and did some of my exercises, it finally popped in the way it’s needed to since I fell.  After I left there, I went straight home and got into my running clothes.  I felt like I could finally give it a shot.  I was excited and nervous at the same time.  Excited I felt like I may still be able to run and nervous I would fail.

I only managed two little miles before my back started hurting and I had to call it a day.  But the point is, I still gave it all I could and have a goal to cross finish lines again this year.  Every one of them will be tougher than last year, but  what kind of person would I be if I didn’t push myself and be happier for doing it?

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100 days to go!

It’s just 100 days until the next Cowtown Marathon.  My whole running world revolves around the Cowtown.  I started just to run that one.

I was going to go all in and live my dream and do the full, but after my last half a few weeks ago, I have had to come to a hard realization.  I can still run and fight my condition, but not for 26.2 miles.  I had to change my registration from the full down to the half.  Surprisingly, that was one of the hardest things I have ever done.  The odds are that I only have one more half in me, but we will see where that goes.

Do I still really count as a runner if I can never knock out the full marathon?  It is the event that moves you over to elite.  On the one hand, I can’t do it.  On the other hand, I work harder just to train and complete a half that some do for the full.

Sometimes I just question things too much.  All that matters is I have 100 days and I am excited

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not always a silver lining

Even leading a charmed life like I do, there is no always a silver lining.  Quit laughing!  We all know it’s true.  It’s that whole duality of my existence that defies convention and I rather enjoy it that way.

It ain’t no secret by now that I get a little more crippled every week.  However, I do seem to find new and interesting ways to get around my limitations.  Or at least try to get new stories to tell about dumb things I did trying to still be as capable as ever.

All the disabled stories are depressing.  And after yesterday, I can add another.  I went to the neurologist.  My genetic testing results are in.  So it’s not DYT1 dystonia and the DYT5 results were inconclusive.  My neurologist is sure it’s DYT5 Dystonia.  On the plus side, we have decided against the dbs surgery.  And no botox shots since my symptoms keep rotating too much and not settling in to one area for long enough.  So we increased the levadopa again.  Started with one pill, then two, then four, and now six a day.  So it appears we will just keep throwing meds at it trying to slow the progression.

But then there is the flipside, I am an addicted runner who just doesn’t know when to shut up about it.  I’m always trying to convince everyone I know that the joys of running top almost everything.  And I think I do look damn good for a crippled runner.

The pictures from my last half came back.  the camera guy somewhere between mile 9 and 10 got a nice shot of me still with my runners high.  I was smiling and goofing off in front of the camera.  Two miles later I was in a full blown bad spell and the finish line was two miles away.  In that pic, I look like I was twisted up in all kinds of agonizing torture.  People were asking if I was ok or needed help and one guy thought I was in a bad zombie costume for halloween.  I must admit I had the running shuffle down and acted the part.  Oh well, I am not going to go “almost” all the distance and give in.  No matter the pain, that would be the stupidest thing ever.

Sometimes we fall short no matter how hard we try.  With all the work I put in, my number one bucket list item of a full marathon is over.  A piece of me has died with that dream.  I was a screw up in life and had a secret dream I kept from everyone.  I finally decide to go for it before I get too old.  And then dystonia happened.  I’ve still ran numerous 5k’s, 10k’s, a few mud runs, and two half marathons.  But I never will cross knowing I did the big race just once in life.  It would have changed my life forever in a good way.

I wanted to have that uncontrollable big grin when anyone ever asked if I had ran a marathon.   And with a spark of deep down happinesss I couldn’t contain I would have been able to say I did the Cowtown Marathon.  The rest of my life I would have looked back with a content pride, not boastful, just self happiness that I had achieved my biggest goal.  The quiet satisfaction of knowing I could accomplish whatever I put my mind to.

I’m not done running, don’t even think that.  I will be running as long as I can, even after my doctor has said stop.  It’s hard to give up who you are!


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half marathon #2 is officially in the books

I completed the No Limits Half Marathon at Texas Motor Speedway this morning.  I keep going while I can.  It’s getting tougher to keep at it, and it ain’t because I’m 40!

When the run started off my right foot was spasming and I had a limp.  My big toe tried to go straight up while the others went under.  No big deal though.  I frequently have the problem with my right foot and just suck it up.  I cruised along easily for about the first four miles.

Around mile four, the fun begins.  I feel the tension starting to build.  I know I haven’t pushed to hard and that is making breathe hard.  I know it’s dystonia starting to cause spasms in my chest.  It increases and then moves to my shoulders.  The throbbing and spasming really suck and hit my neck.  I refuse to give in.  It’s about the running and conquering yourself, not quitting and sitting on the couch feeling sorry yourself. ( that will be later once I can’t run anymore).

Somewhere between mile six and seven, while trudging along, my neck pops in a way I don’t think it was supposed to.  But it helped the pain start to recede a little.  And after a point, the endorphins kick in and I feel ok.  I mean really ok.  No nagging pains at all, just running in a state of zen.  This is what it’s all about!

I get a few miles to truly live without all the pains.  And then we get to about mile ten and dystonia decides that those few moments of freedom were not to be allowed and to return with a vengeance.  My cruising pace dropped and if you would have seen me, you would think I was not going to make it.  Everything tenses over to the right and my arm starts flinging, it looks like a jog where I half drag a gimpy leg and hunch over to the right.

It was a cross between the zombie in the standard dragging his foot while chasing someone and Igor in Young Frankenstein all hunched over.  I was a site to see.  Several people stopped and asked if I was ok.  I would explain I had a neuromuscular issue and that considering the circumstances I was doing reallly good.  They would wish me luck and pass me.

The pain lasted all the way until I crossed the finish line.  I didn’t beat my previous half marathon time.  It was actually close to the samme time.  The only part that matters is I didn’t let dystonia stop me and ran the whole thing and never broke down and walked or just sat down and gave up.

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24 hours to go!

Twenty four hours to go and I will be lining up for a half marathon.  It’s going to be a cold October morning barely above freezing.  I’m kind of dreading this one but I can’t back down now after months of my big mouth trying to get people to come race the crip.

Thanks Dystonia!   A few of my symptoms have been persistent lately and they are gonna make this rough.  The trunkal symptoms make it tough to breathe and I have spent this week doing light runs trying to see if I could work it out with no luck.  It don’t matter though because tomorrow I will still cross the starting line knowing I have a bigger challenge than usual and head for the finish line.

I’ll never win or do very good at any race.  It’s ok though.  One day I can look back fondlly remembering when I was a runner and had the time of my life.

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another day off

When my alarm first went off this morning, I could feel all over it was going to be one of those “fighting with dysonia every step of the way days.”  I can feel every single vertabrae and they are going separate directions.  My left rib cage does not want to expand and contract, it just wants to contract and I can’t seem to get a full breath.

It’s one of the most frustrating things you can imagine.  Due to all my heavy duty muscle relaxers and the fact it’s not good for me to drive, I am allowed to work from home.  Every morning when I get up, I always hurt in some way.  But usually I can got the 40 feet from the bed, down hall, and across the living room to my desk.  Not today though!  The alarm first went off at 5 and it was after 8 I could make it.

Granted, I did fall back asleep during part of that time, but it wasn’t real sleeep.  It was like when you are in the hospital and you never seem to be able to really sleep sleep.   Once I finally got up, I had a little to eat because I have to eat with my meds, took my daily cocktail of 6 pills and added the big flexeril.

So now that I am still up for a short while, let’s take a short inventory of where I am having symptoms.  The backs of my hand, my left shoulder, then from my left collarbone right up to a point along my jaw at the bottom of my ear.  Then my whole spine, as some vertabrae want to twist right and some want to go left.  And my ribs ache like I got hit in the back with a baseball bat.

But now the good news.  I need to spend a large chunk of the day trying to get this all under control and if any way possible hit the gym.  I still have a half marathon coming up this Saturday.  I’m an oddball, every single thing on the planet can beat me down to the point where I just want to give up and hide away from the world, but if I can start my feet running I can go forever.

I don’t know how to explain it.  When it comes to running, I can suffer any pain and endure anything,  That much pain and endurance in anything else in life and I can’t take it.

So if I somehow can relax and calm it all down and then go run, I’m still not done today.  Today is my two year anniversary and I will be taking my incredible wife to the same sushi place we went on our wedding night!

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bouncing back

I haven’t posted anything in a few weeks because I was in a slump.  October 3rd was my one year anniversary for when I was diagnosed.  I spent a lot of time thinking about all those undiagnosed years and how miserable they were.  I always knew something was wrong and tried so hard to hide it.

During that whole punk rocker phase, for the most part that was not the real me.  Living that way made it easy to put up walls that no one wanted to try and get in.  I had tried fitting in and then being a wallflower but that always made me a target for the other kids, so I decided to pull a 180 and that actually worked.  Inside was something real with this shell that said “stay away from this freak” and it kept a lot of people from getting close.  I wonder how many opportunities I missed by pushing everyone away.

I hated having this unnamed shadow over everything I did.   When I finally found out what had been wrong, I learned I was lucky even though it doesn’t feel like it.  Way back when someone asked what was wrong, I had no answer.  I always grew up afraid of knowing one day I would get worse.  I refused to think about it because I would have went crazy.

It’s ironic that now that I am getting worse rapidly, in some ways I am better than ever.  It’s a whole new world of worry as weekly I am less and less able to do things.  I work harder and seem to get less accomplished.  But there is a right side to all this!  Instead of some unnamed bunch of symptoms hanging over me, I can now say I have Dystonia and that I do a lot more than most people who have nothing wrong other than laziness and apathy.

I will be really surprised if I am not using a walker or at least a cane by the time I get to my two year Dystonia anniversary.  I’ll also be surprised if I am still able to work by then.  At the rate that symptoms have progressed in a year, I’m hoping for six months.  My symptoms didn’t just appear on Oct 3, that’s just when things began progressing and it got bad enough I gave in an went to the doctor and sent to the neurologist.

I face every day knowing as soon as I wake up it’s going to be a struggle. Some days I just want to roll over and quit.  But where in the hell is the fun in that?   Waking up knowing you have some kind of challenge ahead should just suck, and every now and again it does, but for the most part, I feel more alive being defective than I would otherwise.

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