By the way… can’t stop scar tissue

I haven’t written on here on a long time but it’s time to hoist the black flag and sail back into familiar waters.  I need to apologize for vanishing.  I went through a bad spell and had to abandon running.  I haven’t liked who I have been since I stopped.

They say with Dystonia don’t run, maybe swim or walk.  Don’t go to a chiropractor but maybe light stretching.  I’m sorry but that is slow death.  At the urging of my better half, I began going to a chiropractor.  He is one who specializes in a technique called CLA which is supposedly one we can go to.

Here’s where it gets fun.  A week and a half ago, he says as  far as he is concerned, I am clear to start up again.  Two days ago, he says if I want to run again, go to the gym.  I say I’m ready but seem to find excuses not to start.  This evening my better half asked if I was still planning on going and I am sitting there making one excuse after another.

Somewhere, I joined the pity party some of us with Dystonia have.  I let the constant back ache wear me down.  So as I sat there, I started missing that other me so bad I couldn’t stand it and off to the gym I went.

Going to the gym sounds like no big deal, but let me tell ya, in my case it is.  All of us with Dystonia have it just a lil different on triggers and specific symptoms.  I tend to wake up every morning with that whiplash feeling you have the day after a car wreck where you just ache head to toe.  And some days it only goes downhill.  Other days the spasms are in overload and I can think of only one way to describe the feeling.  You’re in a 100 yard dash and crouched down waiting for the gun to go off.  You have the adrenaline pumping ready to spring like a cheetah.

That is the best way I can describe how it feels daily.  That doesn’t include when you have a torticollis moment and your ear and shoulder try to become one.  Or your shoulder blades want to meet.   Or when you get that neck spasm and have that odd Popeye looking grin.

Since I get the joy of that anyway, I took the big risk so many Dystonia sufferers cringe at and went to a chiropractor.  And today I went back to the gym and no back pain, just overloaded endorphins and feeling good for a change.  I’m scared to say this, but once it is in writing I can be held to it, so hear goes.  By the time of the weekend for the Cowtown Marathon, I will be doing the 5k.  There said it and now get to be held to it.  I’m smiling just thinking about it.

The Jolly Runner

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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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