Monthly Archives: August 2010

Rocky Mountain High

In July 2010 Sean travelled to Colorado Springs, CO courtesy of the USABA (United States Association of Blind Athletes) for the 2010 National Sports Festival in Conjunction with the Rocky Mountain State Games

During the first half of the week, athletes had the opportunity to learn and refine their skills in various sports clinics instructed by USABA national coaches.  They then had the opportunity to compete in the Rocky Mountain State Games. 

Sean competed in tandem cycling with captain Jeff Tracey.  They won a gold medal completing the race in approximately 27 minutes (the next closest time was 36 minutes). 

In tandem cycling, the stoker pedals from the rear seat of the tandem, adding power, making the bike go faster and farther.  This is the position for visually impaired cyclists. The cyclist in the front seat, the captain, controls the steering, shifting, and braking.

Sean also competed in shotput and discus.  He won silver medals for second place in both events.

Captain Jeff Tracey and Sean
Tandem Cycling

Getting on My Own Nerves

This past week has been entirely too stressful!  I’m starting to irritate myself.  I’m have been cleaning obsessively because I’m stressed and need to feel in control.  Save your invitations, I’m not coming to your house.

I think and re-think and obsess. . . . I tell Sean, “Stop.  We are not talking about your med board anymore.”  only to start the conversation myself moments later.  I. Am. So. Angry. And. Frustrated.

Jordan is moving this week to Mankato where he will live with Sean’s brother and family.  He will be working and will attend South Central College there in January.  We were supposed to go with to see him off and visit Erin (we haven’t seen her since July 7th).  Now this trip has forced us to change our plans.  I’m extremely disappointed. 

We will be attending the 65th Blinded Veterans Association Convention in Washington DC beginning on Friday.  I have been looking forward to this trip all year.  In fact, we are arriving a couple days early to have some extra time with friends before the convention begins. 

We fly out for the MEB appointment on Tuesday morning, return home Thursday late afternoon, and fly to DC Friday morning for ten days.  I have my sister staying with Keeley while we’re gone.  I was feeling bad about leaving her for ten days, now it’s 13.  And I’m missing her first day of school (to be honest, at 16, I wouldn’t really be a part of that). 

I thought all the phone calls and emails and frustration with scheduling this appointment was overwhelming. . . now I’m dealing with the travel schedule and wondering how to pack with barely enough time between trips to sleep.  Not that I sleep anyway, so what’s the difference?

I am seriously lobbying for my own room.  Sean kicks, twitches, jerks, has night terrors and night sweats, and snores OBNOXIOUSLY loud.  By obnoxiously, I mean he will snore so loudly he wakes himself up and asks, “what happened?”  He has actually snored so loudly that the dog got up and sniffed his mouth!!  When I bring up sleeping in another room, Sean is so unhappy that I decide to stay and make do. 

The start of school saddens me.  I know that I could not balance work and home, even with two kids gone.  I could not take another busy and stressful year and still be able to say I don’t scare small children.  But I am missing my room and the routine of back-to-school preparations. 

So I’m setting my sights on the Convention, and traveling to MN to visit the kids over Labor Day weekend.  Sean has a trip mid-September and I will have a week with the bed to myself.

Stuck in the Middle With You

Clowns to the left of me, jokers to the right, here I am stuck in the middle with you.

We should be nearing the end of the medical evaluation board (MEB) process, emphasis on the word should.  Of course, things are not going according to plan. 

I’m going to post the edited and re-edited version of this one as I just read what I wrote, and obviously I was not a happy girl. 

Long story short, when we went for Sean’s med board appointments in May Dr. M requested a neuro psychological evaluation as the previous one was outdated.  We told him we were trying to have appointments done close to home, so he told us exactly what the test needed to include.  We travelled to the Black Hills VA in Sturgis, SD to have that testing done in April, and Dr. M was given the results of that test within a week. 

In June, we inquired about the NARSUM (narrative summary) which should have been completed by the doctors so we could review and Sean’s case could go forward to the next level and he could complete his medical retirement.  There were still no dictation notes from Dr. M.  We worked with our PEBLO who despite multiple attempts did not get notes from Dr. M.  In fact, in July during a meeting to discuss the lack of progress, Dr. M asked for a copy of Sean’s testing report–the one he was given in April.  Another two weeks passed and we asked Eric Bursch of Congresswoman Herseth Sandlin’s office to make some inquiries.  Following this, we were contacted by the PEBLO and told we would need to return to post and have the testing repeated as Dr. M said the testing was inadequate because it was done at a VA facility and would not be acceptable for the MEB/PEB.  What??  Apparently, only the military can administer the tests properly?  You might have mentioned this in March, or April, or anytime before now. 

We were given three dates, none of them convenient, and told to make it work. I was told by one individual that the MEB should be our priority. . . we jumped through numerous hoops in April and May and did everything that was asked of us.  We know it’s a priority.  I think it should be a priority with the doctors as well.

Then we were told that funding is short, so Sean might have to travel with someone from his unit, or I might have to drive, or they might not be able to pay for the trip. 

How is it that the Army could send my husband anywhere they want at a moment’s notice, put him in harm’s way, and will fund his mission 100%, but when he comes back disabled and suffering from multiple afflictions, well, you’re on your own.  When they want him to travel for an appointment–an appointment that should not be necessary but for doctor’s oversight–there might not money available?

Thanks to Eric Bursch and the support of Representative  Herseth Sandlin’s office, the funding issues were resolved rather quickly.  Funny thing, the people I was talking to regarding travel and orders were MUCH nicer to me after they had spoken to him.  Sad, really. 

I do not understand why the VA and DoD systems cannot work together. Why is it not possible for a test administered by a medical professional at the VA not good enough for the Army and vice versa?

I do not understand why the VA and the DoD want Sean to prove and reprove his injuries.  They are withholding benefits because they don’t know if he might improve?  It’s been four years!  How about a system that supports and compensates without degrading and frustrating servicemembers who put their lives on the line?  How about “taking care of our own?”

As Congressman Phil Roe said at the hearing, “We spend $1 million per year to keep you in combat, to keep you in harms way, we get you home, we don’t have that same commitment to you.”  Exactly!

Completing the med board affects Sean’s Post 9-11 GI Bill, which he transferred to Erin and therefore affects our payments to her college.  Depending on his final rating from the physical evaluation board (PEB), there will be a monthly retirement income from the Army, and health insurance benefit.

We are also waiting for the VA to make a compensation and pension rating that would award him for permanent and total disabilty.  This would allow each of the kids to draw a monthly payment for college under the Survivors’ and Dependents’ Educational Assistance Program (DEA).  With 2 kids currently in college and the third headed there in two years, this is a HUGE benefit.  Sean may also qualify for grants to improve the house and make it more accessible for him, and to replace our vehicle since we travel so much for appointments. 
Why not process and pay based on the actual physical evidence, and if the condition changes, make modifications? Believe me, Sean would be thrilled if his vision came back, and his mind came back, and his pain went away, and he could return to his former life. He would have no problem amending his benefits if his life turned around as they seem to be “waiting to see.”

Did I say I’d make this short?  We will be flying out Tuesday morning and returning Thursday afternoon.  Sean will repeat the testing as asked, and we have been assured that Dr. M will be required to complete his dictation ASAP.  Sean’s case will move forward to the PEB quickly.  For their sake, I hope so, because we’ve learned that a few phone calls is all it takes to turn things around. . . . and my dialing finger is ready!

The Caregivers and Veterans Omnibus Health Services Act (S. 1963)

House Passes Landmark Bill to Care for Women Veterans and Provide Support for Veteran Caregivers 

Video: President Barack Obama signs the landmark veterans’ caregiver bill at the White House. Official White House video, released.

Military Update: Many angles to caregiver bill
By Tom Philpott
Special to Stars and Stripes

Sen. Daniel Akaka (D-Hawaii), chairman of the Senate Veterans Affairs Committee, endorsed House changes to the original Senate bill, passed last November, and swiftly shepherded it through final passage.

“For too long, the families of wounded warriors across America have paid the cost of war without sufficient support from the government [that] their loved ones risked all to serve. I look forward to President Obama signing this important bill for the families of disabled veterans, and for women veterans, veterans in rural areas, and those veterans sleeping on the streets tonight,” Akaka said.

Rep. Bob Filner (D-Calif.), chairman of the House committee, said caregivers of “heroes” who returned from Iraq or Afghanistan brain-damaged or with other severe wounds have had to quit their jobs, putting financial strain on families. As voluntary caregivers, they also have received little or no training in care delivery.

The new law, he said, will provide pay “to make up for loss of income; training to the caregiver; funds for respite care and some other expenses. It’s not just the young man or woman who comes home [who is changed]. It’s the whole family involved and we’ve got to help the whole family.

Hitting the Slopes

Sean and Erin took a trip at the beginning of April 2010 to Snowmass, Colorado for the National Disabled Veterans Winter Sports Clinic

Sean and Erin
Team Headwall
Ready to ski
There they had the opportunity to ski, snowboard, snowmobile, and scuba dive! The weather was beautiful with temperatures in the 60s and 70s.
Scuba Diving
They both loved learning to play goalball.  Goalball is a team sport designed for blind athletes.  Players compete in teams of three, and try to throw a ball that has bells embedded in it into the opponents’ goal.  They use the sound of the bell to judge the position and movement of the ball.  Blindfolds are used for sighted players or those with partial sight.
Erin had the opportunity to meet other disabled veterans and family members.  She found it reassuring that her dad isn’t the only one, and learned a lot about the resilience of wounded warriors. 
For Sean, it was another chance to push his limits, try new things, and help him discover that his disabilities do not define him. 
There were several olympic and paralympic athletes in attendance including Andy Finch, Bode Miller, Casey Puckett, Chris Klug, and Gretchen Bleiler.

Erin and Chris Klug
Andy Finch with Erin
Sean, Bode Miller and Casey Puckett

Med Board Blues

You’ve heard of March Madness?  Well, I’d like to give it a new spin.

In March Sean officially began the process for his medical evaluation board (MEB) through the Army which would allow him to take a medical retirement .  We have been waiting for this to proceed for almost two years.   

Following our testimony and meetings in Washington, DC in January, there was some Congressional pressure applied to get people moving.  Suddenly we had people calling and scheduling appointments.  Great!  However, a nurse would call and say they had an opening that afternoon (Um, no.  We’re 10 hours away.), oh can you be here at 10 tomorrow?  (Seriously?)  They were scrambling, but no organized plan in sight.

Fortunately we connected with a Physical Evaluation Board Liaison Officer (PEBLO) who worked dilligently to arrange all Sean’s appointments with various departments within the same week at the end of March. 
Orthopedics:  examined his 1998 knee injury
Psychiatry:  requested repeat neuro psychological evaluation
Ophthalmology:  requested repeat evaluation by neuro ophthalmologist
The neuro ophthalmologist requested an MRA, MRI of orbits (eyes), and an electroretinography (ERG).
Neurology:  requested repeat visual evoked potentials (VEP)
Physical:  requested repeat MRI

With some difficulty, Sean was put on orders to fly us down for his week of appointments. Despite the push to have Sean’s evaluations done in a timely manner, the job of issuing the orders was a “hot potato” with no one doing the job, and everyone denying it was their responsibility.

We were told at week’s end that Sean needed to have the above testing requested by each department completed. . . at the military base. . . as schedules allowed. . . meaning mulitple trips back and forth.  Sean requested that he be allowed to arrange the appointments closer to home to make it easier for him and for our family.  It was agreed that we would work with Tricare to find providers and set up the appointments–and have it all completed within 30 days!

Little did I know what I was agreeing to do!  I spent most of April on the phone with Tricare trying to get each test approved.  I was on the internet searching for providers, then contacting each provider to ask if they were a Tricare provider, accepting new patients, and could see Sean within 30 days.  In the meantime, Tricare was sending me letters with appointments they had arranged in places like Independence, MO, and Topeka, KS.  I was calling and cancelling those appointments and making new ones closer to home.  By close I mean within six hours driving distance.  We travelled to Minot, ND, Sturgis, SD, and Minneapolis, MN, and Sioux Falls (3 times) in less than a month.

There was great confusion over the MRI as Tricare refused to approve it in Aberdeen, instead telling me every time I called that Sean could have it done on post–10 hours away.  Ridiculous!
While it took longer than 30 days (we had to make multiple requests to the doctor on post to submit a request for an MRI in Aberdeen), we managed to have all testing completed and results submitted by mid-May. 

Then, we waited for the doctors to write the NARSUM, or narrative summary, which will eventually go to the Physical Evaluation Board (PEB) for a final rating decision and discharge.  We are still waiting.

Taking It On The Road

2010 will be known as the “year of the road trip” in our house.  We have actually been traveling for appointments for the past three years along with making trips to visit Sean when he was away, but 2010 will take the top prize for mileage.

We (and by “we” of course I mean “I”) will have driven roughly 12,781 miles by the end of August this year.  This calculation just includes round-trip road miles, not daily miles.

Sean currently has an appointment once a week in Sioux Falls, so adding in those trips through the remainder of the year, we will reach a grand total around 19,277 miles (daily driving to school and work, etc. averages 12,000-15,00 miles per year–so we would really be closer to 34,277!! ).

In addition, Sean and I flew to DC in January and will return in August.  Sean and Erin went skiing in Snowmass, CO in March.  Sean went to Colorado Springs for the Rocky Mountain State Games in July.  In August Sean and Keeley went to a summer sports camp in Birmingham, Alabama.  We went to Kansas in March for appointments and will return later this month. 

Does anyone else think this is ridiculous?

Hanging in the Wind

I need to go back and clarify a little.  Sean was pleased with the PTSD program in St. Cloud, and he came out feeling better in many ways.  We saw changes at home and the first month home went exceptionally well.  I do not mean to knock the program, and after reading Sean’s medical notes, I believe they did a fine job.  HOWEVER, if you listened to any of my testimony you are aware that during the 2 1/2 months Sean was a patient at the St. Cloud VA, no one ever contacted me.  Not a doctor, not a psychologist, not a psychiatrist, no nurses, no social workers, no case managers.  Not once.  I feel that was a HUGE oversight to leave the family component completely out of the picture.  They did not ask for any input regarding the problems he has at home, or what our concerns were.  They also did NOT call or make contact to give feedback or updates on Sean’s progress, or to help us understand PTSD or his treatment plan.  What they did do was send home his medical records from his stay–all 375 pages–and say, “Tell your wife to call if she has any questions.”  Are you kidding me? 

As if it wasn’t bad enough that it took three years to get Sean into a comprehensive program (delays were due to faulty diagnosis, need for blind rehab, etc.), now they were turning him loose without adequately educating the people who live with and care for him.  I think that’s a shame.  The VA needs to do a better job of involving the family members and caregivers, and providing them with the information and education they need.  It cannot simply be, “You have PTSD.  See you next week.”  We go home and live with this EVERY day, they only have to think about us for the hour we’re in the office.  I think their policies would change if they had to spend their lives the way we do. 

I can see I’m worked up by my excessive use of CAPS.  Deep breathing. . . counting to 10. . . again. . . . and again. . .

After Sean returned from the PTSD program in St. Cloud we read through all 375 pages of medical notes.  Then I contacted our case worker to ask about follow up.  It took several weeks for the response from the VA that Sean’s follow up would consist of EMDR treatment.  Another two weeks and the provider had been lined up in Sioux Falls for appointments every other week. 
These appointments began the week after my leave of absence started, so in spite of my regrets, it truly was the best decision for us and for my students. 

I read a book on EMDR and quite honestly, I cannot say whether I think it is the miracle breakthrough it claims to be, or if I think it’s too good to be true, but since I am not the mental health professional, I’ll let my opinions go.  Suffice it to say I am not able to describe the process any better than to say it involves a long light bar which in Sean’s case had to be directly in front of his eyes.  The light moves back and forth and as you follow the light with your eyes there are tones played in alternate ears on headphones.  The therapist then asks you to focus on a trauma, do a little talking, the watch the lights and listen to the tones and it’s supposed to help the brain process the information. 

Well, the light hurt Sean’s eyes, he had pain from moving his eyes side to side.  The tones in his ears agitated him (as to most bells, sirens, beeps).  So not much got done in therapy. 

After about six sessions he talked to Dr. K in mid April and asked for alternatives.  Dr. K suggested he switch to Cognitive Processing Therapy (CPT).  Sean contacted our case worker and she agreed to make the arrangements.  Finally in mid-June an appointment was arranged with a psychologist at the Sioux Falls VA.  Now it is August and he is finally getting started with the CPT.  It feels like we have wasted seven months.  I understand that things take time, but does it really need to be so difficult to get treatment?

Sean has been most frustrated by the lack of peer support group options and family options.  In St. Cloud he met with an OIF peer support group every day.  We do not have a group in Aberdeen.  The group in Sioux Falls is closed, so he must wait until fall when a new group starts.  Dr. K told us he was trying to get a provider to travel to Aberdeen one day a month to start a group as he had plenty of patients willing to participate.  When I asked one case manager about the possibility, she told me there were not enough people interested in Aberdeen.  Who should we believe?  The doctor who works with the patients, or the case manager who does not know them?  At any rate, I think the VA needs to find a way to either provide traveling staff to rural areas for both 1:1 and group therapy, and they need to more adequately use their V-Tel technology.  Good grief, we have three computers in our home with webcams.  It seems to me that it would be inexpensive to link up a group of 10 soldiers from anywhere in the country with a provider once or twice a month. 

So now, almost eight months after being released from St. Cloud, Sean is getting appropriate follow up for his PTSD symptoms.  Man, if I moved this slowly at my job I would be FIRED!

Tough Choices

The time had come to make a monumental decision because something had to give.  I sat down with my principal and discussed my options, which were few.  With a heavy heart and guilty conscience, I took a leave of absence beginning in February 2010 so that I could devote more time to taking care of Sean and our family.

I felt terrible, as though I was abandoning my class, my students, my coworkers.  I felt like I’d had a massive weight lifted at the same time as I would no longer have the responsibility of running a classroom.  There was an excellent replacement lined up to finish out my year, so I was leaving the students in capable hands.  It was a time of confusion and sadness, loss and relief. 

But I knew it had to be done.  I had been keeping too many things in the air for too long.  I needed to be strong and rested in order to best be there for Sean. 

I have since decided not to return for the 2010-2011 school year.  Currently we are traveling to Sioux Falls weekly and that is not conducive to teaching.  There has also been some hold up with getting the PTSD follow up, so that is not as far along as we would like.  The best thing for us for the time being is for me to be home and continue to manage Sean’s care and take care of myself.

It’s Always Something

After taking three days off for the trip to Washington, DC, I returned to work on Monday and tried to catch up.  That morning Sean had been experiencing sharp eye pain.  I went home at lunch to check on him and there was no improvement in pain despite his having taken two pain pills.  I called the CBOC and was advised to take him to the ER.

I returned to work and made arrangements with my principal to leave for the afternoon.  I made some hasty notes for my substitute and picked Sean up.

We spent the next four hours in a dark room at the ER (the light was too much for his eyes) where he was given IV fluids and four shots for his pain.  As I sat in the dark I thought about how the last time we had been in at the hospital he lost most of his vision and how unprepared we were to deal with that change.  I thought, “What am I going to do if this gets worse?  What if he loses his sight completely, or if he falls and hits his head, or . . . or. . . or. . . “

Thus far we had dealt with everything as it came along and limped along in between.  I started thinking that I was in no position to deal with another change, and certainly not a challenge.  How would I be available to help him when I was already juggling so much and feeling like I was doing none of it well?

It was time to talk to my principal more seriously and consider all the options for our family.