Sunday, October 31, 2010

Halloween Lost

  I made plans to go trick-or-treating with my son this year.  We had borrowed a wheel chair from my wife's work, and I had taken pain killers.  The pain just refused to be controlled and this Halloween was lost.
  It may have been the cold, or the hour long kids party we went to first.  One way or another I ended up home, alone, and rather pissed off.  It's easy to tell people to not let a disability get in the way of what they want.  I hear it at least once a week; "you just have to do it."  The truth of the matter is that this is the same thing as asking someone to impale their foot with a 6 inch nail, or smash their knee with a hammer.
  I'm going to 'toot my own horn' here.  People who live with severe chronic pain tolerate far more than anyone else in this world.  If you have severe chronic pain, or know someone who lives with it, then you have the blessing of witnessing one of the hardest struggles and greatest triumphs the world over.  That people like me can manage to accomplish anything is incredible.  Today was just one of those days that I couldn't overcome the urge to not be impaled by the nail or smash my foot.
  To those of you who are out with your kids, savor every minute.  If you're all dolled up and out to celebrate have fun for me, and the others out there that can't do it anymore.  Take a minute to raise your beers and give your cheers for those who served and want to be their with you.  Don't take it for granted, because it's emotionally crippling when you can't do it.
  Happy Halloween.

Wednesday, October 27, 2010


  I hate throwing-up.  Vomit is not fun.  I have a nasty symptom of chronic pain to share with you.  Real pain makes you nauseous.
  I've spent all day today fighting back the urge to empty my stomach, and as the pain gets worse the nausea gets worse.  Last night a spent an hour praying to the porcelain god; praying to just vomit and get it over with.
  Anyone have a good cure for pain induced nausea?  Mind you that smoking a joint is out of the question because I can't afford to lose my veteran's medical benefits...

  Last Thursday I joined the Marine Corps League.  What a long, painful ordeal.  It was worth every bit of pain though.  It's nice to be surrounded with people who live their lives like I do; like we never left the corps.  It was overwhelming to hear everyone offering to help their brother out.  Why didn't I do this a long time ago?  I'm not sure, but I do know that I've gotten into a huge network and have some major players helping me out now.  I'm starting to believe that it's just a matter of time before I finally have the support I need to keep my family moving forward.
  I started to work on a new song, but I'm having trouble lately just holding a guitar.  Yesterday I played for about an hour or so, and today I tear up if I try to put anything on my thigh.  Perhaps tomorrow will grace me with a reprieve so I can get some more work done on my recording.
  I posted my song up on YouTube.  I thought that if people shared it that it may take off and get into the ears of someone who could help me earn my keep through song writing.  It's only had 6 views.  You can take a listen HERE.  Please leave a comment to let me know you where there.  And if you appreciate the work please take the time to share the link with others.
  Tonight I'm going to start writing.  I'm not sure what, but I'm starting tonight.  I've been failing as a musician, failing as an artist, so now I'll see how well I bomb at being a writer.
  Thanks for reading, and I'll be back tomorrow with more!

Tuesday, October 26, 2010

Those who truly understand

  There are some people that claim they understand what I'm going through, and then there are those who truly understand.  I had the pleasure of spending most of my day today with an individual who, to whatever extent it is possible, truly understands the road that I walk.
  Jhon, thank you...

  Hands on the Hips

Sunday, October 24, 2010

One Night's Good Sleep

  Often people don't realize that chronic pain leads to sleep deprivation.  I'll go weeks praying for just one nights good sleep.  My prayers where finally answered last night.  I've not felt this alive in months!  I think one of the reasons I slept so well is because my dreams where so incredibly vivid and surreal...
  I was thinking about posting the dream here, but it covered a period of about 3 weeks and would be far too long, so I'm going to try to write it up and post it as an attachment later this week...
  Sorry for the short post, but I'm entertaining having my weekends be light posting sessions with heavier, and lengthened, posts during the week.
  Thanks for reading, and I'll have a healthy post for you all next week!

Friday, October 22, 2010


My mother goes through these periods where she's pissed off about one thing or another and, for some reason, takes it out on me.  This last time she was yelling at me and giving me the treatment and made the statement 'You posted up on your blog about your neighbors and how they helped you, but didn't say anything about how much I have helped you'.
My mother watches my son Monday through Friday.  Lincoln is dropped off at her house on the way to Amy's work and then picked up on the way home.  For that I'm eternally grateful.
I love my mother...

My mother makes me cry.  I try to share with her how I'm hurting and she turns around and states she's hurting too.  I make every attempt to tell her how something she did hurt me and she turns around and explains that I hurt her too.  She has a tool shed sized memory when it comes to all the things I've done to hurt her, or all the things she's done for me, and when ever I'm having problems she walks into that shed and comes out with some reason or another to demonstrate as little support as possible.  It makes me sad, and tearful, and feel un-valued by the one who gave me life.
I love my mother...

My mother makes me insane.  No matter how many times I'll say something she refuses to get it.  I could say it in 9 different ways, in 10 different languages, or broken down potato head style and she still refuses to get it...
I love my mother...

Originally my mother was supposed to be coming to my house to help me with my activities of daily living.  Helping me get my meals, making quick runs to the store for things I didn't have accessible, calling 911 when I black out, etc.  But because, in my opinion, it made her so uncomfortable to see what my life is she came up with excuses and became more harmful to me than helpful. 
I don't eat through the day except for some snacks that are readily accessible.  I can't cook in the oven because when I open it the hot air hits my leg and causes some excessive burning.  I wasn't going to tell my wife, but the other reason I don't cook in the oven is because I almost fell into it while she was on a trip.  Yes, I was trying to make a pizza and the heat from the oven caught me in such a way that I almost fell in.
I can't drive anywhere as it's extremely dangerous.  I've only driven 4 times since this started in September of 09, and of those 4 times I almost got in accidents 3 times.  Terrible record there...  Ever wanted to have a taco from Taco Bell and can't get there to eat it?  That's the story of my daily life.  I don't watch much TV because the food commercials are unbearable throughout the day.  That statement seems silly and sad, but true.

My son loves his grandmother.  He asks about her when he's at places she normally takes him; looks for her after his naps when he wakes up and she's not around.  I'm glad that they can spend the time together that they do.  She raised me.  I'm proud of who I am.
I love my Mother...

Thursday, October 21, 2010

Unavoidable Nostalgia

I game to help alleviate my pain.  It gets me focused and helps me put my present situation into a fog.  I just traded a bunch of my old games for a new one that came out.  Every time I try to play it I have flash backs to when everything started, and I'm having a hard time playing it.  It's frustrating because it really is a great game, but the unavoidable nostalgia makes my eyes water and my soul swim in a not so nice pool of pity.
I've got a terrible headache.  That makes gaming not so fun either.  The current theory behind my headaches is that my body is trying so hard to fight against my pain that it's causing an undue level of stress that creeps up my back, over the top of my head, and nestles in behind my eyes.
At least I have a good excuse to get my wife to rub my shoulders.  ;)

Wednesday, October 20, 2010

A quick note

Just a quick note.  My wife started her own blog.
If you're looking for someone to read to learn about living with a disabled spouse, or if you're living with CRPS/RSDS, this may be a useful blog to read and post up to.

The Times I Disappear

Some times I just need to disappear for a while.  The pain overwhelms my desire to perform and I can no longer ignore it.  I tend to withdraw from everything and try to find a center; build a new point from which I can be strong again.  It's hard to smile when you hurt, type a few sentences, or simply have a conversation.
When I get this way everything comes out angry.  My best intentions dissolve and I feel like lashing out at everyone.
Over the past few days I've been trying to rebuild and work through one of those times I disappear.
On Monday I had appointments at the Milwaukee VA medical center.  If you're a disabled veteran reading this, and it's not too far of a haul to get there, do yourself a favor and make that your new home.  There's a feeling I get when I go there; every veteran and civilian is there to help each other.  You don't get that warm fuzzy at the North Chicago center.  Hell, you don't get much out of North Chicago.
The appointments went well and I'm excited to announce that in the very near future I will have a seating apparatus that will give me the ability to shower daily!  The lady we met from occupational therapy was very energetic about being able to help me get back to being able to do a few things again.  My primary care put me on an antihistamine which was supposed to amplify the effects of my narcotic.  I'm going to say that it's working.  Every time I've taken them together I feel like I've been hit by a truck.  Lastly, my pain psychologist is getting us hooked up to try bio-feedback.  Maybe that will be the cure.  I'd rather doubt it though.
I met yesterday with the veterans' representative from unemployment.  He's going to 'try' to find me a job I can fill from home on the couch, but he didn't seem overly confident.  I'm not sure what a job on my couch would look like.  On top of that he offered to help get me a better cane, and to make a few phone calls to try to get my music out.  If I could song write for a living I'd be very excited.
During the appointment I received a phone call from Senator Durbin's office.  They actually asked for specifics concerning the legislation I've asked to be put in place.  I'm not sure if it will get past that point, but at least they called.  One phone call back out of some 30 or so emails and calls...  At least they called...
Sorry for the long post everyone, and I'll do my best to post daily.

Thursday, October 14, 2010

Another Trip to the Hospital

Sorry for the delay in today's post.  Started out a little rough and rapidly went down hill.
I had to make another trip to the hospital.  Had a bout of vomit as the pain increased, and then eventually started to black out.
They shot me up with Valium and dalauted (spelling?).  Didn't help the nausea much, but brought my pain down to a livable level.
The worst part of having to go to the ER is trying to get the bills sorted out.  You'd think that the VA would simply pay the bill, but it's a process in and of itself that tends to take several months.  Eh, several months of phone calls and work to not be in tears works for me.
I've been 'inspired' to start working on writing again, and sometime over the next couple days I'm going to start a second blog page with my work.  I've also been very motivated to work on my music, though my leg isn't as motivated.  I'm hoping to get some good work done this weekend.
I've been told that November is the 'Novel' month.  Even if it isn't, I think I'll still use that as a motivational tool to push through getting my words on page.
I'll keep you all posted on how things progress and post links to my music and the new Blog as I progress!
Hope everyone has a great evening, and I'll post to you tomorrow.

Wednesday, October 13, 2010

New Avenues

Yesterday we held a blog chat that Kap was so gracious enough to host here.  We had a great discussion that focused mainly on benefits, and as people posted I quickly learned that there where a couple places that I hadn't turned to for help yet.  I spent the rest of the day exploring these new avenues.
Unfortunately all but one of them turned out to be dead ends.  The only offered agency that I was able to get anywhere with was the Illinois Department of Vocational Rehabilitation.  It took 4 phone calls to finally get in touch with the right people there, and in the end I was offered a counselor who should be calling me over the next few weeks.  The woman who took my information didn't think I would be able to participate in the program because of my limitations, but set things up anyway.
It was very empowering to have so many people turn out and discuss the issues that plague the systems that govern veterans with disabilities.  And I was even forced to take a long hard look at myself to figure out my own priorities.
Prior to the discussion I had come to the decision that I had approached every person that could possibly make a change in both my situation, and the inevitable situation our future generations of veterans will be in.  I had actually, without consciously thinking about it, decided to give up and make it public knowledge how far my suffering would go.  I had decided to martyr myself in the hopes that it would have some form of profound change on a system I felt was untouchable.  I hadn't thought about it; was just doing it on auto-pilot.
Jhon Baker was the one to point this out.  The simple statement he made forced me to really think about what I was doing.  I have a wife, and a two year old son, and a daughter, and I'm going to let them slide down with me.  For what?  It would have been a pointless suffering for them, and for me.  After things wound down I found that I had a new vigor; desire to find the help my family needs, and resolve to fix some issues.
As for a daily pain update, I honestly thought I was going to end up in the hospital since last Thursday.  The pain keeps getting worse through out each day but then recedes just before I reach the point of passing out.  I know that the excitement from yesterday had a big part in keeping me going through out the day, and one of my old friends from the Marines calmed me down and helped me work through things last Friday.  Today seems to be a relaxed day, and I'm able to get around a bit.
On a side note, I still haven't heard anything from the local senators who sit on the Illinois senate.  I realize there was a holiday in there over the last few days, but at this time I completely believe that they've shrugged off the invitation to talk about what changes need to be made.  I also didn't receive a sing reply from any of the senate candidates to whom I had sent an email.  I really thought that engaging people who where trying to represent me by winning votes would have taken the time to write a simple email.  Perhaps I'm just to anxious for a response and I need to give them a little while.

Tuesday, October 12, 2010

Blog Chat Take 2

So, today is the big blog chat.  I'm hoping we have a good turn out.  I've invited congressmen, senators, friends; posted on several different pages...
I'm going to medicate myself in about 10 minutes.  Pain is really bad this morning and I want to be semi-functional for the event.
I didn't sleep much last night, mostly because I had that 'first day of school' experience.  Just too wound up about today.  I'm hoping this is the beginning of making changes for the better for those who are serving us now.  The deserve so much more...
The dialogue will be here -

A huge thanks to Kap.  Despite all that is going on in his life at the moment, he's still taking time out of his day to try and help.  It's more than most have ever done, and I count him as one of the angles in my life.
See you all there!

Monday, October 11, 2010

Memory Loss

So I'm sitting here trying to figure out what went wrong for the blog chat, and now I'm realizing that it isn't happening until tomorrow...
The worse thing about pain is how it destroys your memory capacity.  Some times it's so overwhelming you get dates, days, times, names, everything mixed up.  The event invitation is for today, but on Kaps Blog it states it will be tomorrow, Tuesday...
For everyone that showed up today, I apologize for the mix up.  Had I been more focused, and in better working capacity, I may have caught this sooner and got it rectified.  Seems most of my days are 'hind site' kinds of days lately.
I hope those of you reading will take the time out of your schedules to participate tomorrow.  And in the mean time feel free to post up any questions or remarks here.  It's always nice to have a dialogue about my experiences.

Blog Chat

Today's the day.  I'm sitting here anciously waiting for the post on Kaps Blog here
which will spur on our dialogue for the day.  I'm so excited that we have so many participants, and I hope that we'll have some unexpected representatives from the state of Illinois...
See you all there in about 10 minutes.

Sunday, October 10, 2010


Pain does strange things to people.  Some people wither and die from it; others find the drive to accomplish and overcome.  The only definite thing is that pain will change you.
Chronic pain is a bit of a different animal.  It's forever, and hence the person is forever changing from an uncontrolled stimuli.
For me I tend to go back and forth between longing for an end, and wanting nothing more than to show the animal who's boss.  It's hard, having been a Marine, having so much pride, and then having to ask my wife to get me a bowl because I can't; having to tell a guitar student that his lesson is cancelled while I gulp for air and pray for relief.
Yesterday I found drive.  One of my old friends from high school published his poetry.  I was NOT going to miss his event, and I wasn't going to let my pain ruin his moment of celebration.  I had such a good time, but eventually the pain stopped the drive and I had to leave.  I would do it all over again today and every day to experience what I did yesterday.
You can read some of his work here:
I would highly recommend his book.

Saturday, October 9, 2010

The Mechanical Me

One of the means of managing RSD pain is through implants.  There are two types.  The first is a nifty pump that dumps morphine steadily into your body with a concoction of other goodies to chemically treat the pain.  The second is a device that's about the size of a pager which feeds an electrical current through leads that go into your spine.
I have the latter.
My implant sits just above the left hip in my lower back.  I have two long scars; one runs horizontally where they stuffed the implant in, the other runs vertically over my spine where they fed the leads.  The device runs out of power ever couple of days and I have a special nylon belt with a giant magnet attached to it that I have to position just so to recharge.  Think of those new power mats that let you charge devices by just laying the device on the mat.  Only my mat is on the belt.
It takes me about 15 minutes to get it situated so it transfers the maximum amount of charge, and it has to stay in that spot for about 2 hours to get a full charge.
My daughter thought it was kind of neat, like a robot me.  My son calls them 'my owies'.  Some people just nod and pretend like it's a normal thing, others want to go so far as to touch the power source.
Anyway, it worked great for the first couple months.  I was out and about doing all kinds of walking and travel.  I tried to make up for the several months of life I had lost.
Now it doesn't work much.  I've been told that it's working, but my pain is so severe that it's overwhelming the capabilities of the device.  We'll never know unless I have the remove it, but if they do they'll never put it back in.  I'm not a lucky person so I'll just keep it...

Friday, October 8, 2010


I wanted to take a minute to publicly thank two very good friends.  Our neighbors Chris and Jessie. 
Jessie is giving me a ride to Jhon Baker's open house this Saturday in celebration of his new book, and has spent several hours helping Amy and I watch our son Lincoln.  Without her there would have been several instances that could have ended badly because I wouldn't have been able to care for my two year old.
Chris has literally carried me to our van when I was going into shock.  He's always there for me when I need someone to talk to, and has spent countless hours playing online video games with me while I work through my pain.
Of all the horrid things that have gone down over the last year, these two have been invaluable blessings.
I only hope that one day I'll be able to return the favors.

From Mayors to Kings

I've spent the last 2 hours on the phone talking to representatives out of 5 different government offices.  Either they gave me a new number to call, or they simply turned me away.
The Crystal Lake Mayor's office didn't want to discuss anything they could do, and before I had finished telling them the extent of the situation they fed me two phone numbers for 'local' senators.  Both numbers went straight to voicemail and I haven't received a return call yet.
I tried to get through to the VA representative at the office of employment.  The number has been busy for the last two hours.
Next I tried to reach the mayor.  The individual there claimed that he would 'take down my support/complaint' to forward to the mayor.  He didn't take my name of phone number, so I'm assuming this will be lumped in with all of the other legitimate complaints that will be discarded and ignored.  After trying to make me feel like he was actually taking my situation seriously he pawned me off on to their VA liaison who wasn't in his office.  His voicemail didn't work and I have no means of calling him direct, though I'm not sure why I would.  If he's a member of the VA he's not going to side with me over his employer.
I tried to contact the two local senators again.  Still straight to voicemail.  Employment office is still busy.
Next I contacted Senator Dick Durbin where I was asked to leave a message.  Still no call back from there, although I expect to hear back simply based on the level of concern I heard in the voice of the person I was talking to.  That individual also told me he would be sending an email to the contact.  I have some high hopes about this one, but I'm sure they're going to be dashed somehow.
Next I contacted my attorney who just called me back.  They weren't able to discuss my VA case without having the documentation in hand.  I agree that's for the best.  So now I'm on the hunt for some form of transportation to get this paperwork faxed.
Things are tough when you can't drive...
In all, from mayors to kings, no entity that I've contacted has any power over the agencies involved...

Thursday, October 7, 2010

Two Pill Days

RSD is like having a parasite.  It's in me, part of me, and I have no control over it.  I have pain every day to varying degrees.  Some days I'm able to play my guitar in a modified postion or play video games to escape, and then there are days like yesterday and today.  I call them two pill days.
Imagine that when you're sleeping you dream of being hurt badly and it's not enough to wake you up.  One of your limbs is being mutilated.  And when you finally do wake up it's into a nightmare reality that you're actually experiencing all the pain from the dream.  Sometimes I wake up shaking like I'm having a seizure, other days I'll wake up screaming, and still other days I simply open my eyes and accept what's going on.
When I wake up with severe pain it's almost always guarenteed to escalate unless I take a heavy narcotic and try to isolate my leg.  I call them two pill days because I usually end up taking one pill around this time and another around 6 hours later.  Sadly it seems that the narcotics aren't working very well anymore and there are no other forms of pain medication available in my area.
If I moved to California I could make use of medicinal marijuana.  Moving would require me to give up the incredible medical team I have pulling for me at the Milwaukee VA.  I'm still not sold that the move for a secondary medicine is worth the gamble of ending up with a terrifying team of incompetant, uncaring doctors...

Wednesday, October 6, 2010

The System

When an individual becomes disabled they're supposed to file for disability.  Social Security then assigns an adjudicator to work the case who, based on all facts provided, makes a decision.  If the decision is negative it can be appealed.  After the appeal a new adjudicator is assigned the file who goes through the same process.  If this decision is negative the individual can then request a hearing before a judge.  This process takes up to 1 year for the initial decision, 6 months for the secondary, and another 1-2 years for the hearing.
When a veteran becomes disabled they are afforded the right to apply for veterans benefits as well.  This process takes up to 1 year for the initial decision, another year for the secondary, and a minimum of 2 years for a hearing.
People who are disabled like myself have no income, or a single income from a spouse.  This minimal income usually is not enough to sustain a family.
If you request the help of your congressman these times can be reduced, though there is no definitive time frame to begin with.  Because there are so many undefined variables of time it's impossible for anyone to say they can get things done by a specific date.
Both the VA and Social Security will often times request that you be seen by one of their doctors.  When the disabled goes to these appointments they are denied the right to have a third party present for protection.  This gives the doctors the freedom to right what ever they want about the appointment.  In my case, the first VA doctor I was sent to was an orthopedic specialist (my condition is neurological) who couldn't turn on his computer and demanded I get an MRI despite the fact that I have an implant.  During the visit I demonstrated swelling throughout the right leg and foot, discoloration of the same, and severe pain.  His notes state that my ankle instability had improved and that I didn't have any symptoms of RSD.  During the appointment he expressed to me that he didn't know what RSD was...
I've been denied by both entities twice now.  I've had multiple doctors confirm my diagnosis and state definitively that I CAN NOT work.  Mind you these doctors are government employed VA doctors and NOT private sector doctors...
This is the system thus far.
The worst part is that every member of government from my Mayor up to the President of the United States have all openly stated that there is nothing they can do to change the system.  A system with no one to hold them accountable....
And get this, even if I am awarded anything further down the road, they don't have to pay any damages for the denials.  Evicted, in pain, unable to even prepare meals.  For all the pain and suffering they cause, they have no penalty.  Not even a percentage rate to be applied over the period of time the award should have been given...
This is the unchangeable system.

The Power of Dreams

Last night I had a dream.
I was a warrior fighting against Gods and Demons.  Even in death I was still able to force my will against them, and as I tore the soul from a demon who had enslaved a group of people I was returned to life to lead them into the streets of a third world city.  Everything was worn and dry, but held an air of being ancient and backed by centuries of culture.
As I lead the people to their freedom I found myself wanting to learn more than fight and found myself in the midsts of a group of people.  I knew this group of people intimately; knew that they where viewed as evil, but I found myself wanting to know more about them.  I begged and pleaded that they teach me.
Their leader stepped forward and grabbed my arm where I found tattoos; inked images of vines and leaves.  As he spoke more lines began to appear, showing me the true image beneath all the decorative flare.  I was crying, and then I awoke never knowing the true image.

This morning I've found myself with new vigor and determination to bring my story to light.  I will be contacting Congressman Manzullo's office this morning to inform them that my VA benefits have been denied yet again.
Pain permitting, I will be attempting to put together a form letter that I can send to multiple recipients.  Despite the fact that these have been wholly ignored and ineffectual I still feel that I should try again.

Thank you all who have started to follow my posts.

Tuesday, October 5, 2010

New Day Same Pain

For those of you who don't know me and are interested...
  I'm an honorably discharged United States Marine with a service connected disability called Reflex Sympathetic Dystrophy.  This is a pain syndrome where the sympathetic nerves in my right leg tell my brain that it's basically being destroyed.  The pain ratings people have conducted studies that demonstrate this pain as worse than child labor.  I have this pain for large portions of every day.  This also has a direct effect on my vision which blurs considerably, and on my memory which has been completely ravaged.
  I'm starting this blog to post up my trials and tribulations in the hopes that it will be read and the systems that govern the care of disabled military personnel will have little other option other than to change for the better.
  Today I've been gasping for breath for about the last 6 hours.
  To bring everyone up to speed...
  I have submitted for VA benefits increases and social security.  Both have been denied twice.  It would seem that they don't believe that I'm disabled and are falling back on technicalities to deny me.  My family is on the verge of eviction and having the family vehicle repossessed.  Things are pretty gloomy.
  My hope is to be able to post here from my phone while lying prone so I do not aggravate the pain I'm already in.  I'll try to do so for those who are interested on a semi-daily basis.
  I will also be posting up my direct dealings with the government so others can learn from my own mistakes, or help me find new avenues for success.