Monday, November 29, 2010

One Step Closer

  I feel like I'm one small step closer in my quest to change the bureaucracies that govern veterans lives.  Sometime this week I'm expecting to be interviewed by a large, Chicago based, newspaper.  With the simple possibility of my story being told, politicians are scrambling to do what they can.  They know I'm not afraid to drop bombs.
  I finally got the 'OK' to bring in pamphlets to North Chicago.  The fliers detail the workings of an RSD support group that could be a positive influence in veterans' lives when they're suffering through this pain.  I had called a couple weeks ago, waited for a phone call back that never came.  I called again and was given the run around.  The third time I called I simply stated, "It has come to my attention that you do not want to offer the best of services to the veterans seeking medical attention at your facility."  Within seconds a stammering woman informed me that they would be happy to have the fliers on hand to give to patients with RSD.
  Today I'm going to call some of the auto makers who received bail out money.  I'm going to ask if they'd bail me out of my auto loan.  Who knows, maybe they'll pass along some of the charity.
  I really hate doing things like this.  Calling and asking for help, getting food and the such from charities.  I don't want to be a 'charity case'.  I'm at my imaginations end though, and I'm not sure what else I can do.
  Until next time, thanks for reading!
  Kev

Thursday, November 25, 2010

Giving Thanks

  Today is one of the few days I can give thanks for my loss of appetite.  I know I won't overeat today.  I'm thankful for all of the friends and family that have provided my family and I with so much support.  Without you I don't think we'd have been able to maintain our relationship, or our sanity.
  I'm thankful that I'm alive.  Without my life I'd not be able to share my thoughts.  I may not be able to run around with my son, but I can teach him how to be a decent human being; about things intellectual and philosophical.  And I love every minute that we spend playing video games together.
  I'm giving thanks for all the events that lead me to be here today, and for all of you who take time out of your lives to read my words.  I hope my readers get a portion of the satisfaction that I get in writing this blog and my creative works.  I may not have many followers listed on my page, but I'm being read.  I see it in my stats every day.  Even though my readers aren't 'following' me, I appreciate them taking the time to read.
  Again, thank you all for reading.

Kev

Tuesday, November 23, 2010

Disabled veteran challenges VA rating system - dailypress.com

Disabled veteran challenges VA rating system - dailypress.com

This was the article I read last night, and it enraged me because I had been struggling for so long to get some notice and had been unsuccessful. What a fool I am.
I just spent the better part of a half hour speaking with Douglas Strand, and I think that together we may be able to start to make a difference. I've spent all morning dropping his name and article link to local and national news media; trying to get them to publish our story so no other veteran has to go homeless with Reflex Sympathetic Dystrophy. I remain optimistic that I will eventually get this to the ears of the nation, and until I draw my last breath, or the system changes, I will be fighting for those who served.
Please take the time to read the article linked above; post it in your myspace, your facebook, your blog. Spread this message to everyone. Scream with us so the world will hear. Tell others about the Marine who's lost his dependence and soon will lose his home. Tell them about Col. Strand and his painful journey going before the veterans commission. Tell our story!
I appreciate all your efforts, your compassion, your willingness to help make a change.
Thank you for reading!

Kev

Monday, November 22, 2010

The List Grows

  The list of those willing to help me out in my daily activities is growing.  To those of you who have helped, my thanks.  If I have not mentioned you by name let me know.  I can post links for you in a minor form of repayment.
  I wanted to personally thank my nephew Alex for posting my YouTube video of "In Everything" on his Facebook page.  Alex has always been there for me and continues to help support my endeavors.  We often game together, but not often enough.  I've been asking for help spreading the word about my music in the hopes that it may get picked up by recording artists and Alex is providing some much needed coverage.
  I found out, this past Thursday, that the Marine Corps League's chaplain has people praying for me from the tip of Maine to the southern reaches of California.  I was floored.  Here was a group of people whom I didn't even know willing to dedicate a daily bit of their time to praying for me.
  So to those of you who are helping, my thanks.  And to those of you wanting to help - link it, read it, play it, paste it, spread it round the world.  Email Me for more information or pages you can link.  Help get my story and sound out to others in the hopes that it will make a difference, or bring some measure of solace to those suffering souls out there who need it.
Thanks for reading,
Kev

Sunday, November 21, 2010

Making Choices

The worst thing about RSD is having to choose what you're willing to suffer for.  I remember when I didn't have to evaluate everything based on the suffering that would ensue after the event.  It really opens your eyes to what's important.
Last night I went to a local pub with my brother and his girlfriend.  What a fantastic time.  He won some decent cash based on my pics for the UFC fights, and it was great to spend time with the two of them.  But today...
Today may be a hospital day.  I've already dosed myself with narcotic, muscle relaxer, and supplements.  My stomach is flip flopping from all the pain, and I'm afraid to stop moving because I don't want to pass out.  Just stopping for the short time to type this up is causing me distress.
I was planning on spending a majority of the day working on my writing and music.  Music is out for today because I won't be able to hold a guitar unless things calm down, or I want to finalize the trip to the hospital.  So I'll spend some time writing and perhaps game a bit.
Things aren't moving as fast as I'd like on my other blog, Shear's Shorts, but they're progressing.  The link to that page is at the bottom of my blog.  Hopefully I've been able to get a few people interested who will follow me, and brought some new readers to my good friends...
Thanks for reading.

Friday, November 19, 2010

So Much To Say

Because I'm home all day, with nothing much to do, I've been investing my time in music, art, and writing.  I started a new blog for my work.  If anyone is interested there is a link at the bottom of the page, or you can click here.

Today is the wake for a young lance corporal who was killed overseas.  He was only 20 years old and left behind a wife, 19 years old, and a daughter of only a few months.  Tomorrow they will lay him to rest in a local cemetery.  I wish I knew him;  could thank him for having made the ultimate sacrifice for our freedom and safety.
In the near future I will be posting a link to a foundation, set up by the mother of another dead marine, that utilizes Build-A-Bear to give hope to the children who's parent is overseas.  They're setting it up so that the parent can record a message before they ship out, and then the organization gives the recording to the child to be placed in a bear.  I'll have an embedded video and links for those of you who are willing to make donations.

I've been teetering on the edge of needing to go to the hospital.  The pain gets to the point where I'm ready to pass out and then resides.  Coastal tides of nightmare pain.  I imagine it could be equated to that feeling of nausea that comes and goes when you're sick.  You simply want to be sick and done with it.  I simply want to black out and be shot up with liquid pain relief.
Thanks for taking the time to read my words, and I hope you'll take a few moments to enjoy my creative side.

Wednesday, November 17, 2010

6 Million Dollar Me

  One of the methods of controlling RSD pain is with a spinal chord stimulator.  It's a device that's a little bigger than a tic-tac box that pumps an electric current through the sympathetic nervous system.  The theory behind it is that it will disrupt, and distract, the brains ability to focus on the pain.
  At my RSD support group last Sunday I met a woman who had one and it had given her the ability to go back to work as a teacher.  Her RSD was in her arm and hand, but the device was working exactly as it was supposed to.
  My implant doesn't work.  I have all the tingly fun of an implant with all the pain mixed in.  On Monday I met with one of the representatives from Medtronics, the company that made my implant, in the hope that there would be some adjustment that could be made to increase its efficiency.  So now my implant turns on and off, all on it's own, and still doesn't work.  There's nothing worse than having something jolt you while you're busy holding your breath trying to fight through massive amounts of pain.
  This morning I woke up in such a bad state that I couldn't remember the specifics of events that went down over the last week or so.  General concepts were still there, I remember having made a phone call or going to the hospital, but names, faces, and specific topics discussed are all gone.
  There was a funny process that happened then.  First I was scared, then angry, then just depressed.  Now it's still a bit scary, I still don't have any of those memories back, but it's kind of funny.  I always wondered what it would be like to wake up and forget everything that had been happening.  I have a morbid understanding of what that would be like now.  I'm not sure I'm looking forward to the next occurrence though...
  Tonight I'm going to try and work with my bionic implants, and perhaps tomorrow I'll wake up as the next Lee Majors...

Saturday, November 13, 2010

Providing Support

This week I spent several hours trying to get the word to other veterans with RSD that there is a support group available for them here in Northern Illinois.  I was able to get a couple people that are going to try to make our meeting this Sunday, but not nearly as many as I wanted.  I felt like Schindler thinking that he could have done more.  But my work isn't over in the least.
This Sunday I'll be picking up literature about the group to give to the Milwaukee and North Chicago VA medical centers.
It's funny.  Milwaukee told me, upon my time of calling, to bring the literature and they'd get it out to everyone who was diagnosed with RSD.  North Chicago told me to not bother until they got back in touch with me.  How sad is that?  Someone comes knocking on their door with a free support group for RSD Veterans and they don't readily accept it.  I fully plan on calling them every hour, on the hour, until they 'decide' to offer the group to other veterans.  What gives them the right to close off an avenue of support?
I was also able to get several new members through facebook.  I'm very excited to see some new faces, and proud that I may have provided a means for people to connect and not feel so alone.
Two, very good, friends of mine are going through a very difficult time.  It breaks my heart because I know that they love each other very much.  None of you may know them by name, but I'm sure if you ask God for his help and care, He'll know who you're talking about.
On the gaming front I've been able to game with some outstanding guys in a clan called Divine Knights.  These guys have been supportive, constructive, and welcoming.  Which brings me to one more thing...
I'd like to take the time to personally thank Corey Lease (A.K.A. Dk_Xavier, Da_Xavier).  Corey stuck with me when I was being severely mistreated by a PS3 clan known as Hell Hounds.  I was essentially kicked out of the clan for being disabled.  He left with me, and is the one who helped me get in with the Divine Knights.  I couldn't ask for a better gaming friend.

Thursday, November 11, 2010

Veteran's Day 2010

Today has been a fantastic day, despite the ever present pain and being sick.  I received recognition from my mother, wife, and neighbors.  Chris, my neighbor, spent a few hours playing the new game 'Call of Duty:Black Ops'.  Amy made scallops for dinner.  I've never had better scallops anywhere.
I called the NorthWest Herald, beseeching them, again, to run my story.  I felt like I had a little added ammunition with November being national RSD awareness month, and today being Veteran's Day.  I wrote a Facebook note asking for people to write letters and help in that fashion.  We'll see what comes of the endeavors.
A couple days ago I received a letter from the Illinois Department of Human Services.  My case for vocational rehabilitation has been closed due to inability to complete any form of work.  My attorney was extremely excited.
The last week or so has been terrible for pain.  I've been unable to do much, and I'm finding it difficult to even get up the drive to get in the shower.  There's an RSD support group meeting this Sunday.  That will be good, as I'm feeling a need for some support.  Some days are easier than others to find drive and desire to do things.  The last week has not been easier.
I'm happy to have given what I did for everyone.  If I could do it all over again, I would without a second thought.  Please take the time, if you can, to write your governing officials and request that the VA add RSD as a diagnosis in their ratings handbook, demand that veterans receive better medical treatment, and spread the word about RSD.
My sincerest gratitude to all of you who take the time to read my words,
Kev

Monday, November 8, 2010

1 million hits...

  They claim she only has three weeks left to live.  She's undiagnosable.  They don't show any medical evidence that she's going to die.  Many people think she's just suffering from an iodine deficiency.  She suffers from constant pain like me; is trapped in her home like me.  She has a 20/20 spot on her suffering.  The video gets 1 million hits.
  I thought that I might be able to sponge off of all the attention.  I linked a new video montage I put together with my song "Through the Pain" playing in the background.  I posted on her blogspot page explaining my situation.  I offered her my condolences and asked that she may use some of the popularity to help make a change in veterans lives.  I offered myself for this girl to talk to.
  Today, all comments have been deleted from YouTube, video responses included.  My comment went completely ignored on her blogspot page.  Seems people would rather spend all their time focused on a disease that supposedly only affects 1/million people, and ignore the many veterans returning home injured.
  I don't understand.  If she truly only has 3 weeks to live, and is undiagnosable, isn't she going to die?  Wouldn't it be more appropriate to ask for prayer?  I honestly don't think she's going to die.  She may feel like she's dying, but I know that feeling, and I'm still here.
  My video has had 30 hits.  A situation that is fixable and people won't take the time.  Maybe it's because it is fixable and would require a lot of work.  People offer their help when they don't think they'll be taken up on it?
I realize this isn't the end all of methods to have my story heard, but I thought that perhaps a person already demonstrating compassion would lend a bit of it to the cause.

 

Tuesday, November 2, 2010

A Rock in the Pond

When injustices struck at my family and I, rage was all I could muster.  I yelled, fumed, and worked myself into more pain than I needed.  Now I'm no longer raging, but directing my energies to bringing positive change.
A few months ago I tossed a small rock into a big pond.  Yesterday, and today, I finally saw the ripples the rock caused.  I was privileged to speak, personally, with State Senator Althoff.  I was able to share my proposed changes with her.  As of now it looks as if she'll be working on putting together Illinois representatives in an attempt to fix the problems that have plagued my life.  Together, with Congressman Manzullo, Senator Durbin, and others, I believe we'll actually be able to put something together to be presented and possibly passed into law!  It may be wishful thinking, but dreams are what built this nation, and dreams will change it.

On a side note...  It's already the second day of the month and I haven't written a single word for my proposed novel.  I should really find a method to discipline myself.

Today, while out on a brief trip with my family, a woman looked me in the eyes and said "Thank you."  I was wearing my U.S.M.C. sweatshirt, and I was speechless.  All I could do was nod to her.  I hope she understood...