Thursday, June 30, 2011

Why I Don't Trust the VA to do Anything, Ever

What I do:  Submit a transfer of schools request for my daughter under the Post 9/11 GI Bill (Sean transferred his benefits to her) late December 2010

What the VA does:  Sits on request despite numerous calls/emails to expedite the process

What I do:  Rejoice when they finally get the job done the first week of March

What the school does:  Submit Erin's certificate of Eligibility on April 8, 2011

What the VA does:  NOTHING

What I do:  Call the VA in May to double check the status before classes start June 1st

What the VA does:  Assures me everything is in order

What the VA does:  DOES NOT deposit money for classes on June 1st

What I do:  Repeatedly call and wait and wait and wait and wait and YELL at the automated voice recording telling me, "We are currently experiencing a large volume of calls, please remain on the line blah, blah, blah. . . "

What the VA does:  Finally answers the phone on June 9th.  Martha (Oh, how I despise you, Martha!  A pox upon thee!!) tells me that the claim is "processing" and the money will be deposited in 2 or 3 days.

What the VA does:  NOTHING

What I do:  Call and call until I finally get past that incredibly annoying automated message. 

What the VA does:  This time, I speak to Julie who tells me the claim was cancelled in May (for no known reason) and Martha put in a request on June 9th to re-open the case and that can take 30 days!!  30 days?  WTH are you people doing??  Anyway. . . She recommends I email HQ (no, she doesn't have a phone number where I can reach them. . . shocking) with a request for an immediate response due to financial hardship as tuition is a month past due and she needs her housing payment for rent.  She also says, "Martha didn't tell you any of this?"  "Nope."  "She has worked here a long time and should know better than that."  and my personal favorite:  "'Processing' is what the VA says when they don't want to look into an issue."  I KNEW IT!!!!  She then tells me I should get a response from that email before the end of the day, and if not, I should send another stating that I am contacting my Senators and Representative for assistance.  She says, "That always gets them."

What I do:  Send the email and wait. . . .

Friday, June 24, 2011

Do the Math

The VA never ceases to amaze me. . .
Sean has two appointments on Monday in Sioux Falls and an appointment Tuesday for his PTSD group at 5:30 PM.  I requested lodging for Monday night so we don't have to drive 6 hours two days in a row. 

The VA denied the request for lodging as the Tuesday appointment is so late in the day it does not meet the criteria for lodging.

So, let me get this straight, you would rather pay us 3 times the amount in mileage for travel that it would cost you to pay for lodging?  That is silly.

But hey, we'll come out ahead on this business deal.

We do have the option of appealing to the person in charge of travel on Monday when she is back in the office.  That means we would have to be packed and prepared "in case" she approves lodging, if she doesn't, then we're packed and prepared for nothing.

Sean is not going to be a happy camper. . . .any volunteers to explain this to him?

UPDATE:  Awesome. . . We decided with Sean's busy week to just attend Monday's appointments and cancel Tuesday's appointments.  Today, an extremely crabby lady called to chew me out for missing our lodging.  Sweet.

Thursday, June 23, 2011

PTSD Awareness Day is June 27th

PTSD Awareness Day information and links from Veterans Today

The Long Road Home a blog telling our story shared with FamilyOfaVet for PTSD Awareness Day.

Wednesday, June 22, 2011

Anxiety, The Friend Who Gets You All Worked Up and Then Says, "Oh, never mind."

Well this stinks.

Here I am at home in a quiet house with a week to myself to do whatever I choose.  Tonight I'm having an anxiety attack.  Let me be clear, I am not choosing to have an anxiety attack, rather one has barged into my home uninvited like a bad relative.  Oh boy!

I hate this. 

I'm excited for Sean.  This is an amazing opportunity for him to learn more about cycling, practice his sport, make friends, be independent, and face his fears of being out in the world without someone interpreting it for him each step of the way.  I'm so proud of him! 

For most of us taking a trip is a routine experience and while it might have its moments of anxiety or stress, we go about our business knowing that we will come through it fine.  The difference for Sean is traveling means encountering new and unknown situations which he can no longer predict and prepare for, every unknown causes panic and anxiety.  He has eight days of unknowns, new people, strange places, and crowded airports.  This is a big deal.

This week started early Sunday morning when I took Sean to the airport.  He did much better than the last time he flew out for a camp and insisted (until I pushed him through the gate to the screening area) that he was not going.  He was apprehensive and nervous, but much better. 

I walked out of the airport ready to break into that emotional ugly cry and wiped the tears from my eyes.  This is my week off!  I need to celebrate, have fun, relax!  But once again sending him off breaks my heart.  I have no qualms about being on my own, I've done that more than half of our married lives.  I have found that after leaving him at so many heart-wrenching times when he was deploying or he was sick has altered these experiences for me and seeing him leave brings that awful feeling back to the surface. 

Now the past few days I have felt better about it, but when he calls home and is too tired to talk, I hang up a little more deflated.  Tonight is no exception.  When I saw his missed call on my phone, my heart skipped a beat,  no doubt due to the numerous times I missed his calls while he was in Iraq or on med hold and I had no way to call him back.  He called home and I missed it.  Of course tonight was different as I could call him back.  We spoke for a few minutes and he was gone to bed. 

So here I sit in the dark during "my" week, free of the responsibilites of taking care of Sean and able to focus entirely of myself and I'm FREAKING out!  This is not worry, the nagging voice that runs about in my head saying, "I need to. . ."  "I hope that. . . "  "Dear God. . ."  No, this is anxiety, that panic feeling that sets my heart racing and my mind spinning without any rational thought.  That feeling like I'm going to come out of my skin.

I'm going to bed, and not complaining that his snoring and kicking will not be happening here.  There is an upside.

~God loves me even when I don't forward those chain letters.

USA Cycling Paralympic Road National Championships

USA Cycling Paralympic Road National Championships set to kick-off

The USA Cycling website will have schedules and results available along with photos of each event.

Sean tells me that they have been checking out the race courses and learning racing skills.  He will participate in time trials tomorrow.  I have included information from USA Cycling on the two events Sean will participate in this week.

Encyclingpedia: Road Cycling from USA Cycling

Road Races

Road races are team-oriented, mass-start events which typically feature a field of 150-180 riders. Teams are generally made up of eight to 10 riders, however at the Olympic Games, team sizes are limited to a maximum of five for men and three for women.

Road races generally take place on public roads and can be point-to-point races or multiple circuits of a loop anywhere from 5 to 25 miles in length. At the 2008 Olympic Games in Beijing, riders will begin downtown and race 78.8 kilometers to the Badaling section of the Great Wall. After reaching Badaling, the peloton will then contest multiple laps of a hilly, 23.8-kilometer circuit. Women will race two laps of the circuit for a total race distance of 126.4 kilometers while the men will contest seven laps for a total of 245.4 kilometers.

During a road race, team members work together to gain an advantage over other riders, usually designating one person as its team leader. The team leader is determined prior to the race and can be based on several factors including the course’s terrain, a rider’s fitness level and the competition. The leader’s teammates will help in any way possible from fetching food and water to giving up a wheel or their bicycle in the event of a crash or mechanical failure. Throughout most of the race, a team’s leader will ride in the draft of a teammate, never facing the wind head-on unless absolutely necessary.

Behind the peloton a caravan follows the race. The caravan typically consists of race officials, team cars, media and VIP cars, neutral support vehicles and medical personnel. Each team is allowed one car per caravan in which the team director sits and advises his athletes via radio communication. Usually, the director dictates the race tactics from the seat of the caravan car and relays important information to riders including time gaps, the composition of breakaways and chase groups, the location of key riders during the race and any pertinent course information like approaching climbs, descents or corners. A team mechanic also sits in the caravan car, ready to service a rider with equipment if he or she suffers a flat tire, a crash or any other mechanical failure.

Some of the most prestigious single-day road races after the Olympic Games include the annual UCI World Championships, the USA Cycling Professional National Championships and European Classics like Paris-Roubaix (FRA), the Tour of Flanders (BEL), the Amstel Gold Race (NED), Liege-Bastonge-Liege (BEL), and Milan-San Remo (ITA).

Individual Time Trials

Often called “The Race of Truth”, the time trial pits individuals against the clock instead of each other. It’s the most basic form of competitive cycling and the rules are simple: the athlete with the fastest time over a given distance is the winner.

Like road races, the time trial usually takes place on public roads and can be a point-to-point race or multiple laps of a circuit. At the 2008 Olympic Games, the time trial course will be the same circuit used in the road race at the Badaling section of the Great Wall. Women will contest one lap of the circuit for a total race distance of 23.8 kilometers while the men will race two laps for a total distance of 47.6 kilometers.

In a race against the clock, results are often determined by fractions of a second. And since there are no team tactics and riders don’t have the benefit of drafting off another rider, riders seek out every aerodynamic advantage they can. The time trial will feature the most technologically-advanced equipment such as carbon fiber disc wheels, lightweight components, teardrop-shaped aerodynamic helmets, one-piece skinsuits and special handlebars which allow a rider to get into a more aerodynamic position.

Riders start one-by-one at specific intervals, usually one minute, by descending down a small start ramp onto the course.

Some of the most prestigious time trials after the Olympic Games include the UCI World Championships, the USA Cycling Professional National Championships and individual stages of major stage races such as the Tour de France.

Friday, June 17, 2011

Marshmallows

Sometimes life's Hell. But hey! Whatever gets the marshmallows toasty.
~J. Andrew Helt

As we live this crazy new life, we would like to share a few thoughts with you to help you understand the way it is here.

We do not know the future.  We do not know if Sean will improve, or stay the same, or make adaptations.  We do know there is not a "cure" and no one is going to "fix" his problems.  He is getting treatment to help him maintain.

No matter how many times he asks, I will never be able to explain to him why this happened, or why is he not the same.  He is grieving a loss he does not understand. 

I may not work, but I do not have it easy.  This is not a vacation.  I work hard every day to run our household and take care of Sean.  We have many appointments and phone calls and records to search.  Also, please don't ask  me when/if I plan to go back to work as I do not know and that is extremely difficult for me.

While Sean will be glad when his MEB/PEB is completed and he can retire from the Army, he will be terribly sad because he never wanted this.  It is heartbreaking for him. 

Injury and illness is rough on the whole family.  We would all like to think of kids as resiliant and able to "bounce back" in the face of adversity, however, they suffer along side us, many times silently, not waiting to add to the burden.

Sometimes I need to vent or rant without unsolicited advice.  I  need to be able to share my feeling of frustrations, and Sean is not able to be my support as much as he used to be.

Yes, it could be so much worse!!  I am thankful for my husband every single day, even if I may not show it.  That being said, telling me it could be worse is little comfort.  Likewise, telling Sean he is lucky and it could have been worse does not make him feel better about his struggles.  We are doing our best to come to terms with life as it is now.

If you want to help, your offers need to be concrete.  Everyone says, "Oh, I wish there was something I could do," but that leaves us hanging.  It's hard to need help, and even harder to ask for it.  Please make offers concrete such as, "I would love to make dinner for you some night," or "I want to take Sean fishing on ____."  It feels more like an invitation.

There are days Sean wishes he wasn't here. . . saying you're glad he's alive won't take away his pain.

We are not in this for a paycheck or to live off the government.  He does not use the fact that he is a wounded warrior to get special treatment.  Sean has earned every benefit he receives after 24 years in the Army and three deployements.  He gave up his time and so you could have yours. 

He would trade everything to be able to serve again.

Just because we seem to have adapted, doesn't  mean we are doing well.  Our relationship has suffered a huge blow, one I'm not sure we can restore to its former self.

We are stronger than we ever imagined.

Attitudes and awareness are changing.  Since Sean was injured in 2006 at a time when little was known about battlefield TBI, much has been improved.  There is more information readily avaialble than when Sean was first diagnosed with TBI and PTSD.  You can help keep this momentum going by raising awareness.

Our days frequently don't go as planned and new fires pop up.  Guess we'll keep the marshmallows handy.

goal, end 1. the purpose toward which an endeavor is directed; an objective

1.  Develop a binder and emergency plan for Sean.  The binder will contain all important information regarding Sean's care such as doctor's numbers, medication list, etc.  After completing my caregiver training through Easter Seals (to be an approved caregiver through the VA) I discovered this is an area where we are lacking.  I know the information we need, but we do not have anything assembled in case I am not here either for Sean's use or for whoever is looking after him. 

2.  Become diligent at using Sean's schedule.  After returning to the use of the white board we have added more detail to Sean's schedule to help him throughout the day.  Sean says it is easier when he knows what he needs to do and when.  I am encouraging him to make changes when necessary and add new information.  Eventually, I would like to see Sean writing out his schedule, but we can look at that later.



3.  Incoporate a "morning meeting" into each day.  Hopefully this will serve two purposes: to help Sean be more aware of what he has coming up each day, and help him learn to make notes throughout the day regarding things we need to discuss.  Instead of hit-or-miss communication, we will have a set time to discuss important things when we can both give our full attention. 

4.  Eat supper together daily at the table.  This will require a better effort on my part to actually prepare the evening meal, however, ordering pizza will count.  We frequently eat in the living room, and at times Sean is finished before I have begun.  Will also have to keep the table cleaned off, I suppose.

5.  Walk the dog two times a day.  I used to do this when he first came to us.  Then after a winter of being stuck inside, I did not pick it back up.  Sean has applied for a guide dog, and if he is accepted into the program, we will be bringing a new dog into the house.  I would like to have a routine established with Chili where he (and I) gets more of the activity he loves to ease the transition.  He is great with other dogs and desperately wants to be friends, so I don't think he will be upset by having another dog in the house, rather with seeing the other dog leaving the house with more frequency than he does. 

6.  Do an activity for myself weekly.  Lunch with a friend, an outing, anything that gets me away.  I need an outlet and need to have conversations and connections of my own. 

7.  Put aside the anger, frustration, and sorrow that eat at me.  If I want Sean to cope better, I need to become better at it myself.

Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left. ~Hubert Humphrey

A Letter to PTSD

Dear PTSD,

I never wanted for things to go this far, and now I feel I need to clear the air.  You have taken my husband and changed him in ways I never imagined.  You've stolen his patience, his mild manner, his ability to think rationally.   You've wedged yourself between us and turned us from a loving couple into roommates.  I want you to know, it's not me, it's you.

Before you go, here is what I want you to know: 
  • It is not my job to "micromanage" and make everyone do everything.  Some things will not make you happy, you will need to learn to deal with it. 
  • It is not my job to make sure everything in life goes the way you want it to.  I cannot control every aspect of your environment to help you avoid frustration. 
  • When things don't go your way, you cannot take it out on me. 
  • I'm not willing to be yelled at, sworn at, or berated because you are in a bad mood or things didn't go  your way.
  • I deserve to feel relaxed and happy.  I know you are on edge all the time, but I cannot sacrifice my own peace because you are struggling.  You will need to learn ways to cope.
  • I did not come with an "on/off" switch."  Just because you feel bad for the way you acted, does not mean I can immediately turn off my emotions.  Likewise, following me repeating, "I'm sorry" and "I love you" will not help me calm down faster.  Sometimes I am allowed to be upset, especially after you've had an outburt.  I deserve a chance to cool down and regroup.
I am sorry it has to be this way, but the time has come to let you go and reclaim my husband.  I know this might be a difficult good-bye, but believe me when I say we will find a way to live without you.

Sincerely,
A Frustrated Wife

Of Paths and Sharks

Our lives used to be on a path. Sean had spent his entire adult life as a paramedic and had worked his way up at the fire department to lieutenant.  He wanted to become a shift commander and possibly chief one day.  He devoted much of his time to developing the HazMat team and training his co-workers.  Sean was proud of his work there, and in the Army where he was considering attending school to become a Warrant Officer.  I had worked for many years as an aide, a sub, a tutor, and a teacher from high school to special education and finally to first grade where I found a perfect fit.   We had three children we were raising in a nice midwestern town--not too big, not too small.  We attended their various activites and planned trips to see family in the summer and on Christmas vacation.  We saw ourselves as the little old couple in a restaurant or waiting room, enjoying each other.  While it may not have always been easy, there were bumps in the road, or clouds in the sky, we had a direction. 


Now, not so much.  Instead, it feels more like this:

 

 
No arrows pointing the way, no land in sight, just hanging out in our life raft (which is uncomfortably small) getting sunburned and surviving shark attacks.


Where are we headed?  When I started this, I used the term "new normal." Well, it's not new any more.  And I'm not sure it's normal. . . but it is what it is.

What the hell do we do with it?

Will I go back to work?  What new opportunities will come to us?  Volunteer work?  Service organizations?  Will we ever stop searching?  Will my life become one of following Sean on his sporting trips and being his groupie?  Will we live a quality life, appreciating each day for what it brings? 

We need goals.  We need something outside of this.  I need to find direction in my life.  I know that from here on out I will be taking care of Sean and assisting with his needs.  But I need to know where I'm headed.  I don't like this uncertainty.  I don't know how to let go of what used to be and move forward.  I can no longer live my life wishing things could go back the way they were.  Where do we go from here?


Sunday, June 12, 2011

Some Wounds Don't Heal

So, I re-read the blog this weekend and checked all my links. . .
Things that struck me as I read:
  • Sean was gone for 642 days
  • I thought if we could figure out what it was, we could figure out how to deal with it.
  • The fight it took to get him medical care.
  • The fight it took to get him home.
  • We have been struggling to get him appropriate care/diagnosis on one side of the fence or the other for FIVE years!
  • I look at how far we have come with getting his symptoms under control and wonder what he would be like w/o meds. . .
  • It is what it is. . . and now that we know what it is, what do we do with it?
  • The sadness is completely and totally overwhelming even now.  I wept over many posts as I read, and it was a rerun.  I cannot believe the emotional impact this still  has on me.
I wonder if the pain we feel will ever feel better.  I wonder if there will ever come a time when we aren't wishing we were better prepared, or better informed, or more stable.  I wonder if these wounds will ever heal.

    Traumatic Brain Injury Survival Guide

    Traumatic Brain Injury Survival Guide

    Another excellent resource!

    Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans

    Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans

    Excellent resource!

    "A Creed for a Comrade"--In honor of suicide prevention month

    "A Creed for a Comrade"--In honor of suicide prevention month 

    Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury (DCoE) PSA for Suicide Prevention Awareness Month

    Friday, June 3, 2011

    Thursday, June 2, 2011

    Gotta Love It

    I LOVE it when things go right! 

    Today's to-do list included making follow-up calls to the ombudsman at Ft. Riley, Sean's case manager at the VA, and Sean's FRC. 

    Sean's FRC called just a few minutes ago and had already spoken to the other two people on my list.  She gave me an updated status on all outstanding issues, so now I don't have to call anyone!

    Yeah!