Monday, August 4, 2008

A Salute to the Bravest

Senator John Thune visited Sean at WRAMC one afternoon. He took time to sit with him and discuss his medical issues, the battle we waged to receive proper care, and his treatment program at WRAMC's DHCC.

An aide appointed to escort Senator Thune around WRAMC told Sean how impressed he was that Senator Thune walked around freely, shaking hands and talking to soldiers without waiting for the escort to make formal introductions. He said Senator Thune took a genuine interest in each person he spoke with, unlike previous Senators and Representatives he had been assigned to escort.

The following was published after Sean's visit with Senator Thune.

A Salute to the Bravest
Senator Thune's Weekly Column
February 15, 2007

As Americans across the country pay tribute to some of our bravest citizens during National Salute to Hospitalized Veterans Week, I hope we can each renew our commitment to honoring our veterans and troops serving on the front lines today and every day of the year.

It is easy to take common freedoms we enjoy every day for granted--worshipping at church, learning at school, traveling on family vacations--but if we take a moment to consider the great sacrifices that have been made over the years to cement those daily freedoms, they take on much more meaning.

During National Salute to Hospitalized Veterans Week, I had the opportunity to visit with wounded soldiers at Walter Reed Army Hospital. Every time I have the chance to meet with these brave young men and women, I am moved by their hardships, humbled by their courage, and inspired by their level of commitment to this country and to freedom.

On this particular visit, I met with Sgt. Sean Johnson from Aberdeen. Sgt. Johnson is a member of the 452nd Ordnance Company. He is a young man each of us in South Dakota can be extremely proud of and grateful for his brave service.

I also met with soldiers from all over the country. Many of them have lost limbs and endured tragic injuries. What amazes me is that even after having been shaken by violence, terror, and trials, their resolve is unwavering. Many of them told me if they could physically go back to the front lines, they would. This kind of commitment and resolve is what makes America the greatest country in the world.

Today, more than 77,000 veterans call South Dakota home. In fact, South Dakota ranks 10th in the nation for our state veteran population.

In Congress, I have been committed to helping rural veterans like those in South Dakota, primarily by improving their access to quality health care. With the help of my colleague, Senator Ken Salazar (D-CO), we were able to establish a first-ever Office of Rural Health within the Department of Veterans Affairs (VA).

I have also worked to pass legislation to improve the likelihood that a new VA Community-Based Outpatient Clinic could be located with the current Indian Health Service facility in Wagner. Aside from the VA clinic planned for Wagner, a new clinic may also soon be established in Watertown. I will continue to work with the VA to establish these new clinics as quickly as possible, because they will enhance health care services for veterans living in or near these communities.

I have also recently introduced legislation to automatically increase the annual cost of living adjustments (COLA) for veterans' disability compensation.

I will continue to work in Congress to implement policies and improvements so South Dakota veterans are receiving the best in care and benefits. This is the very least we can provide them after years of sacrifice and service.

In South Dakota, many of you will be reaching out to local veterans during National Salute to Hospitalized Veterans week, through volunteering, visiting, and sending get-well cards. The Sioux Falls VA Medical Center has plannned a series of events to pay special tribute to the veterans it cares for.

I encourage all South Dakotans to explore ways to show local veterans our appreciation year-round.


In February 2007 Sean travelled to Washington D.C. for a three week Specialized Care Program for pain management of Medically Unexplained Physical Symptoms (MUPS) at WRAMC's Deployment Health Clinical Center.

The program included daily classes to educate the patients on the theory behind medical practice and medicine and how to deal with illness and their symptoms. He participated water therapy, physical therapy at the gym, yoga and yoga nidra classes, and relaxation therapy. He met with a social worker for counseling, nursing for vitals and meds, an internal medicine doctor for regular monitoring of progress, a psychiatrist for counseling, and a dietician to discuss nutrition for better healing. At the end of the three week program, there was a graduation ceremony for the participants. Sean thoroughly enjoyed the experience he had at the DHCC and believes it helped him learn to relax, accept that he may have life-long symptoms, and taught him how to deal with pain more effectively.

The group took an outing to the Pentagon where Sean met SGT MAJ Preston, the Joint Chief of Staffs and General Cody, the Vice Chief of Staff of the Army. An impressive tour, to say the least!

Sean's Dad was able to visit him for a weekend. They spent time catching up and sight seeing.

Sean's exit evaluation determined that he had Medically Unexplained Physical Symptoms, not due to Post Traumatic Stress Disorder (PTSD), with moderate functional impairment, non-curable.

Sunday, August 3, 2008

A New Year

The beginning of January 2007 was difficult. Besides missing Sean and trying to settle back into a routine, our unit was having a formal welcome home ceremony.

As assistant leader of the FRG I had many responsibilities to fullfill for this event. I was not a willing participant, despite my best efforts to be happy for the others. I was extremely jealous that these soldiers and families had been reunited 2 1/2 months prior and I had very recently gone through another separation from my husband. I resented that I was planning and facilitating a celebration that would have meant so much to my husband and yet he would not be able to attend.

The day included a Welcome Home Warrior-Citizen award ceremony followed by a Christmas party and dinner. It was a 14 hour day from start to finish, and when it was over I was a train wreck.

The high point of the day was meeting with Tonya Peterson, Senator Johnson's aide, when she came to speak on his behalf. It was great to meet her and thank her in person for all her hard work. (Senator Johnson suffered a brain hemorrhage the day after we met with him in Washington D.C.) I cannot express my gratitude enough for this amazing woman.

Also on hand to welcome the soldiers home was Senator John Thune. Senator Thune's office had also been making inquiries into Sean's care. He took the time to speak with me about the progress and our recent trip to Walter Reed. Arrangements were put in motion for Senator Thune to meet with Sean when he returned to D.C. for his treatment at WRAMC.

Both Senator Johnson and Senator Thune were well-informed about our case and concerns. Both expressed outrage at the shoddy treatment Sean had been given. Both assured us that we would not be forgotten, and that they would support us in any way possible. I was impressed with both men, not as Senators or politicians, but as men. I appreciated the way they listened and were sincere in their conversations and actions. Thank you!!

The day was long and difficult. I tried to put on a smile and brave face, but inside I was aching and bitter. When people asked about Sean, it was hard to keep from tearing up. I wanted to talk about him. I wanted to tell everyone what was going on. I wanted to scream, "Doesn't anybody notice that my husband is not here?!" I felt so out of place sitting with my friends next to all their husbands. I called Sean several times on the verge of a breakdown. But somehow, I made it through.

The rest of January was a holding pattern. Sean's condition neither worsened, or improved. The staff on base mostly left him alone. The days dragged on with no further visits scheduled.


“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”

A Salute to the Military Wife

I found this post on a website for Sgt. Samuel Nichols, USMC, a moving site about a recovering soldier and his wife. SGT Nichols was on convoy duty in Iraq when his humvee was hit by an IED. He is currently recovering from traumatic brain injury.

A Salute to the Military Wife

This is for the sad military wives, the angry military wives, and the strong military wives.

This is for the young women that are waking up at 6 a.m. every morning, laying out clothes and packing three lunches for those small precious children that they have been left alone to care for.

This is for the pregnant military wife wondering if her husband will make it home in time to watch their *miracle* happen.

This is for the childless military wife, living in a town or on a base alone where she is a complete stranger to her surroundings.

This is for the women that feel like a third leg when they go out with their friends and their husbands.

This is for the military wife that canceled all her plans to wait by the phone, and even though the phone broke up and cut off every time you spoke to him you waited anyway.

This is a pledge to the women that cry themselves to sleep in an empty bed.

This is to recognize the woman that felt like she was dying inside when he said he had to go, but smiled for him anyway.

This is for those of you that are faithfully in that long line at the post office once a month, handling 2 large boxes and 2 small children like a pro.

This is for that woman that decided to remodel the house to pass time, and then realized that she had no idea what she was doing and sighed and wished she had a little help.

This is for all the lonely nights, all the one-person dinners, and all of the wondering thoughts because you haven’t heard from him in days.

A toast to you for falling apart, and putting yourselves back together. Because a pay check isn’t enough, a body pillow in your bed is no consolation, and a web cam can never compare.

This is for all of you no matter how easy or hard this was for you. Our marines/soldiers/airmen/sailors/coasties are brave, they are heroes, but so are we.

So the next time someone tells you that they would never marry a military guy, don’t bother explaining to them that you can’t control who you fall in love with. Just think of this and nod your head, know that you are the stronger woman.

Hold your heads up high, hang that flag in your front yard, stick 100 magnets on your car, and then give yourself a pat on the back.

If you are a military spouse or know a military spouse,THANK YOU FOR YOUR SACRIFICES

This is for the military wife of a wounded troop who, when she receives “the call” rushes to her husband's side to be with him, to comfort him, to nurse him back to health with her love.

This is to the military wife of a wounded troop, who when the doctors tell her, “there is no hope”, disregards their words, tears up the DNR form, and loves him back to health.

This is for the military wife of a wounded troop who is dealing with traumatic brain injury, who may not hear the words, “I love you”, but can look into her husbands eyes, and know without a doubt, that he loves her and is eternally grateful that she is sticking by his side.

This is for the military wife of a wounded troop, who is at her man’s bedside 12-14 hours a day encouraging him, kissing him, massaging him, praying for him—who knows that whatever God’s plan is for him, she will be right by his side holding his hand on their journey together.

It's Beginning to Look a Lot Like Christmas

Christmas vacation started and I loaded the kids into the van for the 10 hour drive to see dad. Instead of him coming home, we would be spending Christmas in his barracks on base.
I packed the coolers, crockpot, and electric frying pan along with the few gifts I has purchased and pillows and blankets for everyone into the van. Sean's room was average-size like a hotel room, with one full bed, a table and chairs, dorm fridge, microwave, and bathroom. He did not have TV, but had a laptop for watching DVDs. We brought an assortment of board games to help keep everyone entertained. We bought groceries upon arrival and stocked the mini-fridge and coolers.

Since I had done minimal Christmas shopping, saving the bulk to do with Sean, we travelled to a nearby town with a mall for the day. We gave the kids some cash and ditched them so we could buy their gifts. It felt wonderful to have Sean shopping with me as I remembered the previous year shopping with my FRG friends. This year I wouldn't have to email Sean a list of what we had bought for everyone, he was there to help pick it all out.

We smuggled the gifts home in the van with strict "no peeking" rules and then banned the kids from the room while we wrapped them. Not much to do, they hung out in the parking lot and kept knocking on the door to see if we were done.

No room for a Christmas tree, so K colored one for us and taped it to the table where the presents were stacked. We played Scrabble, Uno, and Monopoly. Although it was cramped and the kids complained about sleeping on the floor, it was great to be together.

Christmas Eve we did more shopping at the PX. Then we returned to the room to watch a movie and later open gifts.

Christmas Day we got up to see what Santa had left--MP3 players all around. We went to lunch at an Irish Pub in the next town. This is a topic of some tension...I had suggested that Sean check available restaurants for Christmas Day dining...he assured me that the Cracker Barrel was open...I checked when we arrived, and sure enough unless we wanted Chinese food ala "A Christmas Story" there were no restaurants open...until Sean hit upon Paddy something-or-other. The food was ok, not good, but ok, and three of us ended up with stomach issues later that afternoon. That meant three of us competing with Sean for the one bathroom. The kids have henceforth referred to it as "Paddy McFaddy's." We showered early, put on our pj's and played games the rest of the evening.

One more time we left Sean behind as we headed for home. A home where he wanted to be. A home where I wanted him with me. I cannot imagine it from his point of view, staying behind, but from mine, it sucked. One more trip of crying, and kids crying and fighting. I felt despair. How would I ever get my husband home? Were our lives going to forever be this series of coming together and tearing apart?

I left my Christmas spirit somewhere along the road.
Talking about the trip to Washington D.C.
Christmas MorningChristmas DayA Game of UNO

Giving Thanks

Thanksgiving 2006 we met Sean in Sioux Falls (3 hour drive for us, 6 hour drive for him) for a 4-day weekend. He was able to get a ride with another soldier on medhold who lived in the area. Sean's brother, his wife, my niece (10) and nephew (3) met us there also. We had adjoining rooms at the hotel and the kids were able to watch movies, play games, swim, and hang out between the two rooms.

It was fantastic that I didn't have to drive so far or board a plane to see him this time. And we were in some familiar territory, so it things felt a little more like home. We ate the buffet dinner (not recommended unless you know their quaility) for a mere $200 (7 people) of which maybe $75 worth of food was actually consumed. The chocolate fountain was a hit with the kids, but that's about it.

Luckily, we had packed several coolers of food and snacks. We had crockpots at the ready. I have definately learned how to travel and provide food for all without breaking the bank eating every meal in a restaurant.

We spent some time pre-Christmas shopping and checking out the light displays.

Mostly, we were just so happy to be together as a family and to celebrate a holiday that we so often take for granted. We obsess over menus and clothing and who sits where...we forget the reason is to gather and appreciate the togetherness of it all. Just one year before, Sean had Thanksgiving dinner at the chow hall in Iraq. We were at my grandmother's house and I was heartsick all day for missing him. This year, we were together and that is such a happy place to be.

A Famliy Photo

All Good Things

All good things must come to an end, and sadly our week in D.C. did the same. Sean would return to his barracks on base, and I would return home without him.

It had been an amazing week in so many ways. We finally felt that help was available, if not to cure, at least to educate us and help Sean to heal. We toured the city and took in many of the major sights. We met with Senator Tim Johnson and he listened again to our story of struggle and assured us that his office would assist in any way possible to ensure that Sean continued to receive proper and timely medical care.

After such a long and troublesome separation, we had 5 full days together as a couple to reconnect.

Another trip to the airport at the end of the week. A long wait for flights--bittersweet--thankful for that extra hour together, but an extra hour to dread parting. We've been through this before, but it doesn't get any easier. Ever. Even in present-day as Sean is making a trip home to see family, he doesn't want to leave without me, and I feel it too.

I return home to kids and school and chores. Sean returns to a room on base that is empty and silent and lonely.

Um...Is That a Real Diagnosis?

Is that a real diaganosis? That's what I wanted to say to the primary physician we saw at WRAMC. Seriously, that's it?

Sean was evaluated for 5 days by the staff at the DHCC and on day five he was diaganosed with Medically Unexplained Physical Symptoms (MUPS). Not kidding. They even have a brochure for MUPS, which explains that not all symptoms are diagnosable. Scientifics and medicine can only take us so far.

It was hard to wrap my head around, but they were validating everything for us. They believed Sean was ill, that he was not getting better, that he needed treatment.

Sean was accepted into the Specialized Care Program and his treatment was scheduled for the first three weeks in February. Sean would meet with the team daily, and spend his afternoons working in the warm water therapy pool, learning Yoga and Yoga Nidra, practicing relaxation techniques, and learning to deal with the pain. He would learn about being as healthy as he could be, despite the symptoms.

Saturday, August 2, 2008

Walter Reed

The DHCC is comprised of a team including an internal medicine doctor, psychiatrist, psychologist, social worker, physical therapist, clinical nurse, physiatrist, and nutritionist. Througout the week we met with each of these people to discuss Sean's conditions as they pertained to the area of expertise.

Interestingly enough, the staff asked repeatedly, "What took you so long to apply?" When we explained the circumstances, we were told that since the DHCC is a specialty clinic, it takes one phone call or letter from a referring physician to get an evaluation, and the wait time is nil. The director, Mrs. P, said, "Don't let them tell you we don't want to see you, we're Walter Reed, we'll see you."

It was refreshing and relieving to at long last be talking to people with an active interest in Sean's care and the runaround we had been getting for 3 1/2 months. Finally, people who didn't think we were crazy, or complainers, or trouble makers. We were told, "Given all you've been through, you should be agitated, you should be frustrated, you should expect and receive better treatment."

We were made to feel like people who mattered. Sean was thanked repeatedly for his service and sacrifice.

And there were stark reminders of how fortunate we were. Men and women who had served and sacrificed filled the hallways. Many were missing limbs, or in wheelchairs, on crutches, without sight. To these men and women I say thank you a million times over for being willing to serve where others would not. To protect our freedom at home, and fight for that freedom for others. To sacrifice without thought for yourself. God Bless you and yours.

Washington D.C.

White House Christmas Tree
What's more exciting, an answer to a long and enduring prayer, or a vacation?

Well...First and foremost we were thrilled that Sean was going to the Deployment Health Clinical Center at WRAMC. No small potoatoes here.

But...this would be our first trip together, no kids, ever. Unless you count one night in a small city 2 1/2 hours from home. Seriously, first vacation as a couple. When we met, we had three kids between the two of us, so trips included the family.

And...we would be in D.C. for our 11th anniversary.

Giddy, delighted, ecstatic, elated, joyful. Any other synonym for happy you can conjure. Walter Reed's lodging was provided at a 5 star hotel a 10 minute drive from the hospital. Loved it!! I'll take that kind of service any day!

My goal: to see the White House Christmas tree.

We saw that and so much more including:

Washington Monument

World War II Memorial

Korean Veteran's Memorial

Lincoln Memorial

Vietnam Veteran's Memorial

Capitol Building

Union Station

Apollo Lunar Module

Smithsonian National Air and Space Museum

Never Underestimate

Arrangements were made for Sean's travel to Walter Reed Army Medical Center in Washington D.C. for the second week of December 2006. As you may suspect, this was a typical "happy, happy, joy, joy" moment we had come to expect.

Sean was told by Ms. S and LT D that he would go for a week and be evaluated. He asked how to arrange for me to meet him. They told him that I could not accompany him to D.C. as WRAMC did not want spouses along and would not have time for me.

So...I called the DHCC at WRAMC myself and was greeted by a lovely woman who said to me, "Now, honey, why on earth couldn't you come to be with your husband when he is sick? Of course you can come!"

I took the week off and flew to D.C.

Three Months Lost

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!"
~Dr. Seuss

I contacted the Senator Johnson's office after the gag order was threatened. I asked for assitance in getting Sean to WRAMC quickly due to the continued abdominal pain, nausea, dizziness, occasional diarrhea, vomiting, and weight loss. Sean had now spent three months on base with no improvement, and certainly without adequate follow-through to determine the cause of his symptoms.

Three months lost waiting...three months being told, "there's nothing wrong with you...take your meds and you will be fine..."

Three months of working up the chain of command...three months of being told to stop complaining...

I asked my Congressman for a change of duty station. The inquiry again brought out the best in those overseeing Sean's medical care.

Ms. S called Sean in for a meeting and wanted to know why we had contacted the Senator's office again stating, "We have done everything we can for you."

Sean's response was, "The issue is, if you can do nothing more for me here, then send me somewhere that can help me."

Ms. S replied, "You'll be no better there than you are here."

LT D met with Sean and asked, "What more do you want, we made arrangements to send you to WRAMC?" Please note, that the arrangements for WRAMC were made only AFTER my most recent contact with the Senator's office and their subsequent inquiry.

Rocketship Underpants

"Some days even my lucky rocketship underpants won't help."
~Calvin and Hobbes

Sean's platoon SGT told him the Powers That Be on base were threatening a gag order and loss of rank due to his complaints (my complaints) and "inciting a riot" among other patients in Med Hold who had started complaining due to lack of proper care.

This was reduced to a verbal reprimand by the 1st SGT. Sean was not to discuss any medical issues. Maj H advised him to state only, "My issues are also other people's issues. We just want to be heard and addressed."

Brining in The Big Guns

Month two began with a step in the right direction. I had a contact in our chain of command, wonderful Major H who worked for the surgeon general's office in our command who arranged for me to meet with her boss, Colonel P and discuss Sean's case. Can you see the dancing and celebrating with this victory?

Col P is a trauma surgeon and acting surgeon general in our chain of command. Susie and I were invited to attend a weekend conference in Salt Lake City at the end of October 2006. We were two civilians among an elite yet small group of Majors and Colonels. I was able to discuss Sean's situation with Col P and he agreed that Sean should see an infectious disease doctor, preferably at WRAMC. He told me he would see what the "boss" Gen C could do for us. Hooray!! At last, the attention of the General!

Col P contacted Dr. X and Ms. S. and it was decided that Sean should be sent to WRAMC to be evaluated for a program to manage pain from and unknown origin. He would go for an initial evaluation and testing, and if accepted into the program would return to WRAMC at a later date for treatment. Dr. X agreed to send a letter to the Deployment Health Clinical Center at WRAMC requesting an evaluation.

Dr. X told Sean that was unlikely we will ever know the source of his infection. He could have an infectious disease or parasite (hey--didn't he also say "take your meds and you will be fine?"), or a psychological problem.

Dr. X added that he was willing to write the letter to WRAMC, but it would likely take them months to see him. He said, "Since the abdominal pain is getting better, you're getting better. This really isn't necessary." and "This is a problem that doesn't exist." and "You're so irrational and so concerned that you have a serious problem, but you don't."

Thanks, but I'll take a second opinion.