Victory
 

4.5 months since my paddle placed. Train train train. One carbon fiber upright road bike, bilateral lower leg crps with generalization, and stim at high power.

I intended on a 35 mile ride with 4000 ft of climbing. I got lost (unmarked road and bad directions) and did 50+ miles. > 1 mile climbing. 5 hours riding. A true monster ride.

I have no idea how i will feel tomorrow (probably awful), but today i am amazed. I dominated. It was a beautiful day. Beautiful.

sweet
 

How wonderful MD!!!

such exhilaration.....to be in a powerful body....doing what brings joy!!
I so get it.

I do hope you feel ok today
HB

The DOMINATOR
 

Yup, MD, Yup,

you dominated..... may all be well :)

Wow, what an accomplishment MD...congrats!!

Hope you recover well!

Awesome
 

Awesome awesome awesome

you kick

Feel ok. Thanks for well wishes. Now doing anesthesia for a scs implant! Of course with my rep. Getting less strange.

Because I can
 

A friend of mine who i ride with is a nationally ranked triathlete. He is an absolute monster athlete and a kind soul. He can ride 25 miles in one hour on a time trial course. That is insane. He says people ask me why I do this? Why i train through pain? (I smile at this bc he has zilch idea that my spinal cord is about as safe as Syria). But his answer is familiar. Because I can. It's why i go to work. Why i get in the exercise bike and sustain a hr of 170 for 30 min while my calves start frying. Why i do everything my body lets me. But it has costs - this relentless fight. My personality hardened, but really when you live a life this intense it's your choice. Where you're running up Omaha beach and your taking fire every day. I'm reading a book about Polio and FDR now. He hid his disability from public very well "the grand deception". Been there doing that!!!

I need a new icon- think Navy Seal going in for the kill. Ultra intense. Neither happy not sad. Just focused. One day at a time. Don't quit - you can't. Thank goodness for rap - I'm as white as paper but that sense of oppression and dealing with it communicated in that genre - it keeps me in the fight.

Tired of fighting
 

Had a spill on the bike a few weeks ago - just a huge right *** contusion. Scared me. Took it easy for a week. Ramping back up, but being stymied by cold. Ascended a 2500 ft mt yesterday and despite layering was freezing- hands froze up. Then snowflakes start to fall! Last night i got a cold. Today beaten down. Felt Sick. So glad i live somewhere mild. Don't know if in going out tomorrow or not- see how i feel.

Signed up for a computer program called Strata - for compulsive endurance athletes. I can hold 250-260 watts for 40 minutes and cruise in low 200s for longer periods. It's no ironman champion, but it's solid. I friended a surgeon i work with - we're pretty similar. Gone on a couple rides with him - he is a good person.

My biggest problem is me. Crps can be slowed / etc. Many of my signs have gone away with the serious conditioning, but the pain stays. The psychological changes and defenses you build hard to undo. My insomnia and fatigue are major problems.

One of my coworkers calls me lazy. Part of me wants to kill him - if he only knew! But the few senior people i have told - they say tell no one else. My friends at work who know - they don't know what to do. If I had a friend going through this I would have no idea. It's better that they not know.

My wife and I aren't great with each other any more. Because I'm up and down always struggling and we have three small kids. We both pour tons of energy into them. If i were her I'd be having a hard time too!! She's not a bad person / it's just a tough situation. As much my fault as hers. This disease is just a monster.

I hope you guys are doing ok - we cut down our tree today. Kinda more cool than a lot - first time!

Hi MD! So glad you posted an update. First, I have to say... (and please take this the right way!).....using my Mother Hen voice
"Why are you pushing yourself this hard!!" :eek:
You need to take it easy on yourself.

I sure do understand where you're coming from regarding the CRPS monster. It takes a terrible toll on us, and yes, it affects our loved ones as well.
I'm sorry you are having hard time on homefront, especially with holidays approaching - that puts enough added stress on top of things as it is. Then, with all the responsibilities of the children....all of this on top of battling CRPS.

But at least one good thing is that we have this place to come to so we can vent.
For what it's worth, I care and I hope things look up soon.

Rae
:grouphug:

Dear friend if I may

You cannot no matter how hard I try
when compulsive obsessive behavior
something that has been part of my
life as I was born and grew it grew with
me 52 also 3 alternating days light weights
No more than 20lb. legs 200lbs
4miles sometime 5miles walk everyday
all go I'm going to ask my pain specialist
let's try therapy again as my knees are
Up to know good I am unable to go
into squats another everyday with my
routine holding my weights and 100 sit
ups a day I a volleyball lover especially
barefoot in the sand gone I in my f***++*<
Now that to was a personal triumph
something I controlled
that's out the window
now in a position I never thought
I never factored in my life equation
That my life has been
changed forever
my psychotherapist
gets a kick when I cannot
have anything l any kitchen sink
among a few things organization
A BIGGY
Point
Wanting to deck
that butttt
for that lazy remark
I recognized at a young
of my OCD
keep up the great challenge
with absolute respect if
your out come was successful
don't do anything irresponsible

Happy holidays and a safe one
to you and your loved ones

Thanks
 

Thanks Rae and Eva,

I'm trying to stay safe out there. Getting in better and better shape - don't want another fall. I was lucky. The biking is so important to my mental health - there is no pill to replicate the well being having a peer suggest you do the death ride (the most insane single day road ride that exists - i'm not doing it!!!!)

I'm making slow strides with my family. Bonding with my young daughter. Standing up for my boys. Trying to get along with my wife. Trying to get her to understand. Trying to understand her.

Trying to look at myself in the mirror and make sense of this - I look like a tank with an IPG sticking out my flank. It doesn't make sense.

For me, this is war. You'll never see me treat a patient with anything less than caring and respect. You'll see me overprotective of friends and sometimes a little callous to those I respect less.

Tomorrrow I'm off and kids in camp. Wanted to ride with a new club I joined, but my speed matched cohort going 75 miles. I can't risk that on Xmas Eve. It's uncharted territory. Going Big though - doing 55.

Staying warm and dry in CA. The twinkle of religiosity in me believes that Ullr, god of snow, still mourns my loss. Start of a 3rd consecutive dry cruddy skiing year here. At some point, he will get over it.

Happy Holidays!

Here, My Friend......
 

Is the most important part.....

"I'm making slow strides with my family. Bonding with my young daughter. Standing up for my boys. Trying to get along with my wife. Trying to get her to understand. Trying to understand her."

You see, when I was big#$@ athlete along with private jetsetter country crossing pretty well set big time lawyer..... that part about the family was not in proper perspective. It is vital to those people who are the deepest well of care and concern to you because they are your family..... that you are invested in them as you write about your athleticism. I understand, I have been there.

My wife and I have come so very far in understanding one another these last eight years plus after I was sat on my #$$ by the wreck. The career was shot. The recumbent exercise bike I still had at the time so I could include that in my recovery and maintenance therapy, but on the hill???? Nope, I was off of a free standing bike. At last..... we started talking, and we have talked LOADS. My BEST friend, that woman. My greatest blessing among humankind.

Our kids? They were young enough at the time of the wreck that it was still possible to strive to resurrect something with them. Have it with three, not so much the military guy..... Heck, with my work, and it was work, hard work long days work away from home because of the nature of the litigation, one of the kids suggested I had another family out there...... kinda hollywoodish like, and they were Wrong with a capital W. Never did any funny business like that.

Same young man today would never suggest that. They all know how hard I have worked to restore career to provide for the family.

The riches [in cash] are gone..... replaced by riches in family.

The health is far less what it was and I am striving to leave fat city and at least restore some of what I knew physically..... I use that wheelchair less and less, and walk more and more, even ride my mountain bike although on streets rather than hills.

Most importantly Love resides in our home. We work together in all things.

Now that I face this ding dang posterior re-fusion of the cervical spine for a failed level, we are pulling together to work through this. The incredible pain I work through [that radicular nerve stuff which in my right arm makes me sob and scream] will hopefully go away in large part. They respect me know that they know how hard I push through the pain to help provide by continuing to work in my field though.

Family is where it is at for both you and me. You can do it on all fronts.

A longtime friend of mine is a long career CPO Seal on the teams nearing retirement. He would respect your appreciation for his focus. He is not so much into the hollywoodish part of the country's perception of the work they do. Thanks for thinking of him and his fellow Seals in a positive way.

Best to you and your family,
I will think of you as I celebrate Christmas and you enjoy holiday with family.
Be well,
I gotta stop typing, :Good-Post: :Wave-Hello:

dear MD
so happy to know you will heed to certain
challenges you have running in your veins
never compromise family not preaching
your loved ones would be so hurt dad
did not listen
i also understand your obsession in
conquering things that are in your control
listen to your body
and remember
never compromise
your loved ones
when you get a chance
take a moment and look at your wife
when she isn't aware you are
look at her like you did
when you fell in love
same with the kids
sit down and watch them
their eyes hands how they look
their lips when they talk the beauty
in your 3 kids
and your wife you said you are trying
just suggestions
and kick turd when you are on your bike

blessings to you and family
kiss the back of her neck
as she stands at the sink
or stove

MD Lance
 

Originally Posted by Hannabananna
yes...nice to know you still read and chime in....sometimes this stuff is way over my head...your perspective along with those in the medical field help me understand it all.

Plus I love the way you write

all my best
HB
Thanks Hannah.
************************************************** ************************************************** ******************

Watch Chasing Mavericks. Not a great movie, but a good one. Gerard Butler's character - the experienced surfer is teaching the wonder kid how to survive eating **** when falling on a 30+ foot wave. Fear keeps you alive. Panic kills you.

I feel like I'm living in this in between worlds. The terrible world of chronic pain and the wonderful world of competitive sport. It's a schizophrenic existence that I navigate very carefully.

I gravitate towards the strongest riders I know. Why? Bc you can't be good unless you play with the best. I can hold 250W for an hour - solid, but not awesome. I ride with two guys who can hold 300W - that 50W differential is huge.

I'm riding solo with my colleague who is like #5 in the US for amateur olympic triathlon in his age bracket tomorrow. Google him. I'm gonna split his last name up so this won't come up on a search - Tom Emer ick Total champion. I nickname him Captain America. He swam in the olympics for Panama as a US expat's kid. He doesn't know that there is anything wrong with me. I've asked him to coach me - kind of want to tell him about me but holding back especially b/c his 15 yo nephew is dying of brain cancer. My situation kind of sucks, but that is absolutely terrible and although I think he could take it, I don't want to weight him down.

The other guy I learn from is a pure cyclist. He is as callous as Tom is sympathetic. He hates the web, so I'll never use his name. Russian. Wanted in Russia for ditching military service. Word has it he came here on a sub - I haven't gotten the whole story.

I used to have a personality just like Tom - not in the competitive sense - but the guy everybody likes. Now I'm between him and the russian. More schizophrenia.

They both say that I overtrain. Probably right. The russian watched me come to the top of my 3 mile sprint hill climb, finish it, and hyperventilate for a minute blowing off all of the lactic acid accumulated after several minutes of pure anaerobic effort. He remarked that some people can tolerate that much better than others.

I've learned huge tolerance to it. I don't like it, but for about 20 minutes I can absolutely kill it. It's the only time when I'm active that neuropathic pain is completely destroyed. When I can't catch my breath b/c the afterburners are on 100%.

Cycling has a web series of videos called the suffragist b/c it is a masochistic activity. I watched one. Watched a guy break away from the pack too early and die trying to hold em off. Watched his face. I've been there, but I'm just racing myself.

Tomorrow I'm gonna try to dial it back. Gonna take the kids to the Warriors NBA game and don't want to be too tired to enjoy it with them.

Watched my kid's bball team get killed out there b/c the Michael Jordan teammate of his was playing on his other team's playoffs. Hard to watch the kids mentally beaten like that. I wanted to get in there and mercilessly swat away anything the other team shot. When you're 7-8 years old, not much to learn from a 26-2 beating.

My biggest struggle is the juggling act. When challenged physically like this I push back like the USSR did at the end of and after WWII. I've come to accept passing out with the kids from 8:30-9:30/10 and waking up till 1. Back to sleep till 6? Caffeine caffeine caffeine. My wife and I are figuring it out. She loses b/c of this illness. The kids I have insulated well. They know I can't run well or ski well anymore, but I can play basketball and hike. They know that I can really bike. It takes me away from them a little bit, but it's something I have to do to be the father they deserve. They adore me. It's unfair for my wife. I'm the hero. She's Rosie the Riviter. She's every bit if not more important than me, but no glory.

Biking 10 hours a week keeps me strong. Swimming a couple miles a week rounds me out. I have read the crps literature - the stories of well I did this pt and then I quit. The reality that I have 40 years? of this ahead of me. The resolve to say no quitting. Not ever.

Crps is so damn scary that it makes you fearless in all other avenues. Did a liver transplant the other night - probably lost five blood volumes - no problem - appropriate fear with a life threatening operation but no panic. Took my anesthesia recertification exam today and blew through it b/c I had studied hard and wanted to make my kids game.

And HB, I have slowed down on my twisty descents. I am all too aware that I won't bounce back well from a real injury. That is where I must have fear. The big fall on my *** a few months ago was a great lesson- I can still feel the scar tissue there, but it's going away.

On a sidenote - seeing the Niners come away on the wrong side of that bloodbath NFC Championship was Brutal. Go Broncos!!
************************************************** ************


Hi MD,
I moved this over to your thread….it is a great update with your perspective so I wanted to be sure others saw it especially new readers. Hope ya don’t mind.
“Fear keeps you alive…panic kills you”….I so get it…on a smaller scale as there are times I have to override my fear of falling when I know I am safe. When I am in the depths of a spasm…I take my mind into it and breathe deep with strong focus….it is a strange place…I strive to master it.

I did Google Tom E…so along with all that admiration you have his mastery of cycling and want him for a coach…he also has vast medical knowledge. You’re both mentally driven. If he becomes your coach or not I feel he would be a needed comrade for you to divulge your secret to…. Certainly gauge his situation although consider that the diversion of you may be relief to his mind. He would be good to have around when you hyperventilate knowing you are doing it to achieve nirvana.

Welcome to schizophrenia …I had it down pat with my family of 8….this new experience of it with me is a bit disconcerting.

Acceptance is such a big part of changing the way we used to do things. I am happy the wife and you are figuring it out…she is losing and that is an acceptance for her also. Your daughter will help soften that as she gets older giving your wife female company. Plus straight up tell her what you wrote here. I am very impressed with your journey and how you share it.

I want to research crps as I see it can come from surgery and I am considering removal of my SCS.

I bartered for a three wheeler bike inspired ( I had to repair a quilt)…I can’t swim now cuz I get too cold and I have my winter weight back too. Just got in from Home Depot so I can get in some yard work…always makes me stronger.
I am ready to push myself again.
All my best
HB

Go for it.
 

HB,

I almost had to divulge my secret today. I was in the parking lot psyched to ride and my SCS battery warning light came on. I took the batteries out and it woke up and worked. (I crank it to monster voltage for cycling only.)

Today Tom paced me up my hill of death. Taught how to conserve energy. Not to blow it all the first mile. He set it for 21min except he messed up and programmed his bike computer for a faster pace. I have a GPS and looked at my time after the ride - 20:09. Had I known that I was that close I would have pushed harder and gotten the sub 20 that I know I can hit. It's an arbitrary number, but I read a book or website that said sub 20 up this hill and you're semi-pro level. So I have been on the assault ever since. Sometimes arbitrary things are meaningful.

Glad that today wasn't the day. Tom told me to go ahead and ride up the long 50+min climb back, so I just went ahead, rode hard, and just kept waiting for him to catch up. Minutes passed. A weaker rider that I flew by came into sight. I got pretty worried. Had it been something harmless like a flat tire? Or was he hurt or something? I started descending and met him a little ways down. He looked bad. He was underdressed and it was 50 out. I've got fat on me- it slows me down, but it's protective. Also, he hadn't eaten enough. That ride is a half marathon. You can't do it on an empty stomach. He looked kind of broken. I could tell that he was a little embarrassed. I think when you hold that hero monicker for so long it must be hard to bonk. It made me feel closer to him - i'll never tell a non web soul about it. I said next time I beat the 20 min mark and I'm buying lunch for all!! All I'll say about today is that he pushed me hard and I loved it.

I'm planning on the Deathride this summer. Google that. It's an incredibly hard ride. I now know that I can do it. I might bonk, but if I keep it slow I should not. He's done it 5 times, but not for a few years. Registration is closed. There's another sign up, but it will be hard to get a spot. If you sponsor / donate, you can get in. I think my Medtronics rep can find some company money to donate to the ride. Medtronics can claim to a SCS enabled Deathrider if they choose, but with my job anonymity is probably the right call. Something I'd have to think about. When I magically get spots out of the blue, I'll tell my friend. I don't know how long this SCS works (hopefully a long time), but my time to compete is now.

On another note, my family life is better all around. Playing with my young daughter and ADD middle child boy.

A highlight is my second grader becoming reading proficient and developing basketball skills. We played 2 on 2 half court and I (with great care) kicked a 30 year old's butt while he outplayed a kid 2 yrs older. He loved it. He plays like a small power forward and that's how I played - used my body and owned the blocks. Playing basketball is scary, but I was super careful and it was a risk worth taking. I've been coaching his team. 2 weeks ago they got wiped out b/c their star was gone. Last week they were essentially tied and playing hard and at halftime the star left. (He plays in 3 leagues.) The kids looked worried. The star's name is Will. I looked at all of the kids with a Jim Harbaugh glare and said you are all Will. Don't be afraid of this team. Go out there and play hard. They elevated themselves. The kids went out and won that damn game by a bucket. Much better than the Super Bowl!

All you can do is what you can do. I work hard, but I'm lucky too. Not everybody is so lucky. This terrible illness gives me rare perspective on what's important in life. Sure I wish I could get rid of it, but I have learned things that I never would have otherwise.

So HB, get out there and ride that trike!! Give it your best- that's all that you can ask of yourself. Try the pool too. I originally couldn't tolerate 80 degrees, but now it's not a problem. Now (surpise) I swim 1.5 miles twice a week at a solid pace. It took time. Find a warmer pool first. You can do more than you can believe. Once you start to see gains, pursue them and it's rewarding. I'm on the extreme end - just my personality. You don't have to go crazy like me.

so happy to hear you live life
with family in tow
may all of you remember
where you are now
and where you are capable
of enjoying EVERY MINUTE OF IT
BLESSINGS TO ALL

I told him
 

I told my colleague and local sports hero via email. I couldn't just look him in the eyes. I told him look I'm sick and if I wasn't ill, we'd be doing full Ironman training now. Guess what I've got. He threw out MS - good guess. I dropped CRPS. I'm sure that he's totally stunned. I just had to tell him that it wasn't just about cycling. He has seen someone take to the sport with an insane devotion level - how a winner wins. He has seen me get fast quickly. Now he knows the backstory. He's a good person. I know it will make his heart heavy, but I felt it emotionally dishonest to not tell him. If my judge of his character is correct, he will take me through the Deathride if I can get us in. He'll be more than just a biking friend.

I think I have something to give him. He finishes top 5 in US top 10 worlds. His next best chance to win will be when he hits 50 - that's next year. He'll be "young again" in age class. I want him to be #1 US. To win.

I live an extreme life - I have developed serious survival skills. I have incredible discipline and a work ethos that few could match. It's required to work and play at a high level with this disease. I see training like fight club. I'd rather be taking a beating than be passive. Imagine Ed Norton at his office job with black eyes staring at his boss saying 20 minutes Old La Honda. That in itself can be intimidating- to know that the guy you're "coaching" leaves it all on the field just about every time he plays. Feels crappy. Suits up. Plays hard again and again and again. That's my skill. That kind of work takes #3 to #1. He's always tells me he's "lazy" - he isn't really except maybe by elite athlete levels, but now he's next to a physically inferior supercompetitor.

If I were Tom, my reaction to this would be very complicated once I got through the holy **** part.

whew!!!! It's out
 

And quite safe with him.
I am sure he is thru the *holy crap* reaction and on to the *how do we work this into our friendship/training. He knows your drive will propel him.
Looks to me like you have both been there for each other already....it will only get better and how great to have someone that gets your drive.

Yes on the email ...I get that.
Tom is your equal or more athletically and in education/knowledge...you could only share this with someone that would have your comprehension. No chance of pity...Tom is action.

Deathride is gonna be so exhilarating for both of you. Tell the Medtronic's rep that while watching the Olympics they mentioned that Yevgeny Plushenko (Russian skater) has a "spinal implant".

Good to hear you are finding the up side to all of this... appreciation makes life so much deeper along with being among the few that live an extreme life with such desire for it....I might even (might) say you are blessed.

Do let me know his thought out reactions.
You have guts

HB

Thanks HB!!
 

Thanks HB.

Cool about the skater!! Hard to imagine that you could skate with an SCS, but he must have some hardware in there. I love the Olympics - it's all about going all out. It's the only time I really like Hockey - when it's for country - all those players go crazy.

Tom and I haven't talked about it yet, but my impression from his emails is exactly that. This is something a guy like him (ex-Olympian) will want to be a part of.

Once I get that hill officially beat - think I just beat it on my ex. bike - ugggh - hard! I will have earned my nickname. It came to me after taking my kids to the pool to play. For a few seconds, I was lost in thoughts and my older son said what's wrong - you look angry. I said "oh nothing - just thinking about biking" and smiled.

I'm not the superhero type - mostly it's just hard work and arrogance that gets me through. I'll just take a hero nickname. I'm a WWII buff. I read any quality non-fiction regarding WWII that I can find. There is one US general that the Germans really feared b/c of his arrogance and efficacy in battle. Ike found him hard to contain b/c of the former but b/c of the latter always kept him in his back pocket when things went south. He was no Mr. Nice Guy and I don't agree with some of the culturally insensitive things this guy said, but it's his intensity that I go for.

Patton!!!! ;)

Moderating
 

Medtronics won't sponsor individuals. I asked Stanford and the PA seemed enthusiastic, but I haven't heard back or pushed.

Woke up the day after a 50 mile ride Monday with the sensation of knives stabbing in my lower back. (Nerve root referred pain - it's one of my favorites! - the SCS blocks the sensation, but when turned off for a while it gets you back) It always goes away after Im up and about.

Still would do it if they sponsor, but not pushing. I know that I would finish and I know that I would be in a world of hurt the next day - so much so that it's probably not worth it.

Going to do some local tours (60-80miles) and my biggie is Mt. Haleakala - 10000 feet. I will hurt the next day to bag that one.

Kind of glad that the Olympics are over. I never skiied as a downhill racer, but I probably would have if I grew up near a good hill. I showed my kids the races and talked about the techniques and skill behind it. I have gotten past not being able to ski enough to do that, but it's hard to watch much of it. I used to love it.

Next question is if I will get up to Lake Tahoe with them. Winter finally here. Would like to get them out if I get a window to drive up there in March. I can get up on skis and do it safely on easy runs for an hour or two- just gonna be eating humble pie. But I want to do it for my kids. It's not a safe sport, but it also isn't dangerous. I had some bad luck - want them to try.

Generally doing better with my family. Spent a couple hours with my little daughter alone yesterday at the park and home which were great.

I just feel so divided. Usually exhausted after work. Want to be there for my kids and do stuff with them. Have a strong psychological need to train on my bike a lot.

Want to support my wife - that's been the hardest part. She needs her own me time from dealing with me. I can't give much working ft, doing my pt (cycling), kids, and passing out in evenings. She has a gym with childcare now - I hope she uses it. It's inherently unfair to her what has happened- It can be moderated, but she has to ask for help.

I stand my ground on my "needs" bc to me they are that important. I can largely take the pain, but the fatigue/insomnia and constant planning I have to do to get by - it's a never ending game. I'm good at it I guess, but it's not a fun game.