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.

Monday, March 31, 2008

Letter From a Son to His Father

This letter was written by the 16 year-old son of a soldier who deployed in June 2004, re-deployed with our unit and returned home in October 2006:

Many nights I would lie awake, not being able to sleep, not knowing if you were safe. My heart would slowly sink each time someone mentioned your name, for I knew you were not here.

I often stared at your picture, just wishing to be able to feel your warming touch, or hear your voice to lift me up from this state I seem to have been in for so long.

The news of your arrival lifted my heart higher than it has ever been for I knew I would soon be able to hold you in my arms after many months of struggling through life.

I say to myself how much easier everything will be now that you're home. I no longer have to lie awake at night in fear, not knowing where you are.

I see you slowly walk off the plane and look around, trying to find me. I cannot help but run up to you and embrace your warmth that has been missing from my life for so long.

For me, my superstars are not athletes, but the men and women that give up everything they have so others are safe. So I say, "thank you" to all the men and women of the military, and hope you can really see how much you are loved.

The Un-Homecoming

In mid-October 2006 our FRG planned and hosted a fantastic homecoming reception for our troops. Except for three of them. Sean and two others were in med hold and could not come home with the rest of the unit. For me, it was an un-homecoming event.

As assistant leader, I worked with my six dear friends from the FRG, my army family, to prepare for the festivities. I did not want to be there, and I am certain I did not make it easy for them. How could I be excited for them when my family would be left out on such a joyous occasion? How desperately I wished that Sean was coming home. My kids felt it too, although they tried not to show it. Everyone did a nose-dive that week.

We had to arrange for the speakers, refreshments, posters, parade route, busses to and from the airport, reception afterwards, and coordinate the calling of every family to let them know when and where their soldier would arrive. Many cross-levelled soldiers who were added to our unit to bring it to capacity were from other states and were flown directly home, so there was much flight information to communicate.

Military security prevented us from giving family members an exact time, so we had to tell them an approximate time to be on-hand to board the busses to the airport. Space on the busses was limited, so they had to choose who would be at the airport, and who would wait at the Reserve Center. We had many tense, and even angry family members because we weren't being specific enough, or we were causing family problems by not letting mom, dad, brother, sister, wife, Uncle Larry and the neighbor across the street all ride the bus. We were very unpopular.

And to top it off, Sean was not coming home. Nor did we have an ETA on his return.

I wanted to be there for these families as I had throughout the deployment. I had gotten to know the families from my phone tree quite well and was looking forward to seeing them and celebrating with them. But I didn't want to celebrate. Several times I backed out, but my friends convinced me to be there, that these soldiers all deserved a welcome home. Which in the end is what won me over.

I was there, but I was not happy. I smiled, I worked, I hugged soldiers as they came off the plane. In fact, I made it my mission to hug each soldier who, for whatever reason, did not have a family member present.

I had been planning with a set of parents from Las Vegas to get their son in the first seat of the first bus so that he could see them along the parade route. He didn't know they would be there. As we approached he said, "That guy looks like my dad. I think that is my dad!" and he got tears in his eyes.

The mayor spoke, a touching letter from a son to his father was read, and families hugged, laughed, and cried. People weren't quite sure what to say to me. Some asked about Sean. Some thanked me for all I had done. Some didn't say anything at all. Somehow, I made it through.

When it was over, families and their soldiers went home together. I went home alone.

Sunday, March 30, 2008

You Have Got to be Kidding

Sean was thrilled to have met with Dr. R. Then they lowered the boom. His new doctor on base, Dr. A, would be leaving for three weeks (Sean met him one time) and therefore Sean would be seeing Dr. X.

Wait a minute. . . I thought he was out of the picture. Someone was obviously not telling the truth.

A Second Opinion

Sean was finally able to be examined by a bona-fide GI specialist. Dr. R was concerned about the number of medications Sean had been taking over a seven month period with no relief, or explanation for persistent symptoms.

Sean had a colonoscopy, a small-bowel follow through, and a capsule endoscopy during month two. When all three tests came back with no indication of GI problems or even inflamation, Dr. R did a CT scan which also came back normal.

Dr. R concluded that there was not a problem that he could diagnose, but he would treat to the best of his abilities. He advised that Sean should be under a doctor's care with an infectious disease doctor as the symptoms were not responsive to the prescribed antibiotics.

Why Not Come Home?

People asked all along, "Why doesn't Sean just come home?" Well, it was not that easy. First, he was put on medical hold which means he had to stay until he was well enough to come home and do his normal military duties.

Second, Sean was not well enough to come home and go back to work. If they released him from med hold, then his military pay stopped.

Third, military medical can be tricky. If we pursued outside medical advice, the military insurance could write us off.

Finally, to enroll in and doctor with the Veteran's Administration (VA) Healthcare System meant a 2 1/2 hour drive to see a provider as our town only has a PA, not a doctor.

We were between the proverbial rock and hard place when it came to having the latitude to make other decisions. This is why I was pushing for a move to a different facility or to WRAMC.

I had made contact with the surgeon general's office for our command. They were not sure that the c-diff was all there was to cause concern. There was talk of parasites, and infectious diseases. They were pushing for a transfer to a facility with a GI specialist and an infectious disease specialist. Since we didn't know exactly what was causing this infection, we could not be sure that we could find the proper treatment locally.

There were times when Sean wanted to tell Dr. X he was feeling much better and ready to come home. But we just could not take that chance.

Saturday, March 29, 2008

Are You Really Here?

Pinch me, I must be dreaming. And if I'm dreaming, I don't want to wake up.

I spent four glorious days with Sean on base. It was wonderful! We watched movies, shopped at the local Wal-mart and PX. Slept late. Did nothing but hang out.

Sean had a nice room on base, not big, but decent. There was a town on each side of the base about a 10 minute drive to go and do a little shopping or get a meal.

Sean had lost about 45 pounds. His face was hollowed out, as was his stomach. He was walking skin and bones. He moved slowly. Most of the time he slept. I watched him sleep. I checked to make sure he had a pulse and was breathing. He seemed to have pain no matter what time of day it was. It was hard to see him in that shape. I could put my arms around his waist and touch my hands to my elbows on the opposite sides.

As happy as I was to be with him, I also knew it would be over too soon. I was due back at work on Monday. On Sunday I called my principal and told him that I just could not leave. He arranged for a sub again on Monday so that I could stay one more night.

When it was time to leave on Monday, we were both very somber. I dropped him off in the hospital parking lot and tried to put on a brave face. He did the same. Of all the times we had said goodbye, this was the worst. The absolute most horrible of goodbyes. Sean was tired, sick, and depressed and I let him out of the van and I DROVE AWAY.

I drove away and left him behind. Somewhere that he did not want to be. A place that was not treating him well. I cried most of the way home.

I still cannot find the words to describe the ache in my chest that I was leaving him behind. It was one thing to put him on a plane, or see him drive away. But this time, I left him there. What an awful, lonely day that was for us.

Thursday, March 27, 2008

Road Trip

At the end of September 2006, I was finally able to go visit Sean! I made arrangements for the kids to stay with a friend, and got a substitute for school. I was excited, nervous, anxious, happy, scared, all in one.

I left late morning, after having a near-nervous breakdown over preparations for the kids, packing, etc. The day was overcast, but otherwise good driving weather. I was very stressed about driving by myself, worried about what time I would arrive, wondering if I could find the base in the dark, and (shocking) missing having the kids in the van complaining about the ride.

One hour down the road and I stopped for a snack. When I came back into the parking lot something came over me and I thought, "I should check my tires." This is not something I would normally think to do. But, I had a feeling. . . that feeling turned to despair when I saw my flat rear-passenger tire. I drove to the air hose thinking, "Maybe it's just low," even though I could clearly see that was not the case. I was in full panic mode. I was at a truck stop, but there was not a repair shop nearby. I didn't even know for sure where my donut spare tire was (I know, but I've never needed to know before). I still had 9 hours on this trip, and now I was thinking maybe I couldn't even go.

I went back into the truck stop and asked the clerk about a tow and/or repair shop. She gave me a number but said, "It'll probably be a couple hours before he gets here." That's comforting.

About this time, Sean called to say, "How far away are you? When will you be here?" and I lost it. I lit into him about how I was trying to get there but couldn't have him calling me every five minutes to see where I was. Poor Sean. He had only called one time that morning to see when I was leaving. A little misplaced anger there.

Fortunately, a nice truck driver offered to put on my spare so I could drive 30 miles down the interstate to the next town with a Super Wal-mart and a tire center. God bless that man!! He didn't even laugh when I said I wasn't sure where the spare and/or jack were. At least he didn't laugh outwardly. I said a few prayers of blessing for him and his family and 30 minutes after I stopped, I was back on the road.

I spent the next 30 miles with visions of my tiny spare tire suddenly jumping off my van and sending me into the ditch. Things like that can happen, you know.

I called and apologized to Sean while I spent an hour browsing in Wal-mart waiting for my new tire. I felt so defeated. I could have laid down in the aisle and bawled. Sean told me if I didn't feel up to the trip I could go back home. That was all I needed to hear. Go home? Are you kidding me? And just who are you to tell me to go home? The trip was on!

Back on the road and things were going well. Then it got dark. The good news is, I couldn't see what must have been ominous storm clouds. But it wasn't long before the radio stations started handing out tornado and thunderstorm warnings about 20 minutes behind me all the way there. It rained, poured, thunder and lightning, the whole show. I changed the radio station with every town to hear the latest update. The worst of the storm stayed about 20 minutes behind me. A smart person might have stopped, but I was an exhausted, irrational woman on her way to see her husband after six months. What would you do?

I arrived at base around midnight. I was feeling so very proud of myself for not getting lost! I pulled up and handed my registration, ID, insurance papers to the guard. I was asked to pull to the side and wait. What the hell? Turns out my license was expired!! I almost died! So they had to call the building where Sean was, have him get a ride to the gate, and drive the van onto post. Our reunion was a hug in the parking lot at the gate surrounded by MPs. They were very nice about it and told me who to call to get an extension until I made it back to SD.

Month One Comes to an End

One month came to a close with no answers. Pain persisted despite soft/liquid diet. Medicated for pain and nausea, but no further investigation for a cause. Dr. X told Sean, "you're getting better, wait and see."

Ms. S, Sean's case manager, talked to LT D, hospital director, and arranged at appointment with a civilian GI specialist in a city an hour away.

COL S, the hospital commander, responded to the congressional inquiries with a letter that basically said she was satisfied with the care her facility was providing for Sean. That's a relief! As long as she was satisfied with his care. . .

Sean's mental health evaluation was unremarkable. The psychologist said, "you should be agitated due to the lack of care you are receiving."

I received a phone call from LT. D. She wanted to know exactly what our concerns were for Sean and what they could do to improve their care. Finally! Someone who would listen, who wanted to help! I reviewed the past month with her and expressed our concerns about Dr. X who continually said, "just take your meds," the meeting where Sean was attacked, threats to withhold treatment if congresssional complaints continued, the whole kit and kaboodle. Little did I know that she was the right-hand-woman to COL S.

LT. D contacted me the following day and informed me that Dr. X would no longer be seeing patients due to administrative restructuring, not due to any concerns regarding quality of care. She said that a second opinion by an outside GI doctor was warranted and had been arranged.

She also told me how lucky Sean was to be at their facility where he could receive personal care (huh?) and not at a large facility like WRAMC where patients stay in hotels and shuttle back and forth to the hospital. A large hospital like that could not possibly give Sean any individual attention.

Although I was not convinced he was lucky to be where he was, I celebrated the victory that Dr. X was gone and a second opinion outside of the military would be arranged. It was a day for dancing and singing!

And then I heard that LT. D.talked to Sean and told him that he needed to quit whining. He had gotten his way, so now he needed to be quiet.

I should have known better.

Monday, March 24, 2008

Just Take Your Meds

Week three began with an appointment at Dr. X's office. Sean asked again if he could see a GI doctor. Dizziness and nausea had gotten worse. Dr. X agreed to set up an appointment with Dr. D. I'm began to wonder if this Dr. D was even a real person, or a figment of Dr. X's imagination.

Dr. X said he did not want to let this infection linger and would consider sending him elsewhere if necessary. In the meantime, "take your meds and you will be fine."

On day 15 Dr. X met with Sean. He could find no explanation for the nausea and dizziness. "Just take your phenergan (for nausea)."

"Your diarrhea is improving, so you must be getting better."

"Just keep taking your meds."

Day 16 and Sean met with Dr. X again to discuss a possible transfer to Brooke Army Medical Center (BAMC). After talking to a GI doctor at BAMC, Dr. X said they would not accept his case as it was not serious enough.

Sean was tested for the c-diff infection and this time the test came back negative. Thank God! At last some good news.

The diarrhea, nausea, and dizziness persisted. Dr. X had another medication in mind to clean out the intestinal tract, but the pharmacy--are you ready for this--could not supply it as it was out of stock and they would need to order it.

Dr. X also decided that since the test for infection was negative, he did not need to see GI Dr. D as there was nothing more that he would do. Sean was visibly upset that once again the GI appointment was cancelled. Dr. X told Sean, "You are the most agitated man I have ever met."

Now I ask you, who among us after 13 months of deployment, 5 1/2 months of illness, coming out of a war zone, and being treated poorly would not be agitated?

Day 22 Dr. X discontinued antibiotic treatment as the infection was cleared up, and the antibiotics were not helping with the current symptoms. Sean was told, "You're doing well. Just take your meds and you'll be going home soon." Really? Diarrhea, nausea, dizziness, abdominal pain so bad that all he can do is lay down is "doing well?"

Sean put in a request with Ms. S for an outside second opinion.

Top-Quality Medical Care

Day 11. I'm trembling with adrenaline as I reread my notes from this most horrible day.

I'm going to give Tonya at Senator Tim Johnson's office a shout out here. This wonderful woman talked me off a cliff on day 11. Way above and beyond the call of duty on her part. I can't even tell you how amazing she is. She talked to me almost daily for a while. If I didn't call with an update, she would call me. She would call and say, "I'm waiting for a call back from the Pentagon." A little awe-inspiring. I had her on speed dial and she never once ever made me feel like a raging lunatic (which I might have been), or a complainer, or a bother. She treated me with absolute kindness and concern for Sean's well-being.

Livid. Seething. Raging. That is how I would describe my emotions upon hearing the events of day 11.

Sean was woken the morning by his Platoon Sergeant for an impromtu meeting with MAJ Z, Dr. X, Ms. S (a new case manager), and another MAJ whose purpose I do not know.

MAJ Z asked Sean if he would agree to let Dr. X treat him. She said the hospital was doing the best it could and they were providing top-quality medical care. As this illness was serious, it could take a long time to treat. He may need long-term antibiotic treatment. The hospital and Dr. X were willing to go forward with treatment if no more complaints were filed.

Did I hear that right? Treatment could go forward if no more complaints were filed? Does that sound like a threat to withhold treatment should we exercise our right to inquire about the care he is receiving?

Sean was advised to track his fluids and stools himself. He could purchase appropriate tools for measuring such things at the pharmacy and keep a log book. He should make subtle changes to his diet and track those as well. Never mind that the man was on a diet of ensure, gingerale, and crackers. What should he change?

MAJ Z said that no further lab tests or stool samples were needed. If he had fewer stools, then the infection was getting better.

MAJ Z asked why congressional complaints were launched and why he felt the placement was inappropriate. He had not even been on base for two weeks and already he was complaining about their level of care and making them look bad. Furthermore, they had made arrangements to get him necessary medications, and had scheduled an evaluation with a GI specialist, Dr. D. Scheduled, yes, and CANCELLED!

Sean was told that he is not a doctor, and therefore does not know about his medical needs or treatment (this comment from the doctor who had to look up the condition and said he couldn't treat it). He was told that he was the most agitated patient they had ever met. He was ordered to have a mental health evaluation because he should have been getting better, but was still complaining of symptoms. It was suggested that if his wife came down and spent a few days to help, "relive your tension," he would get better. He was told directly, "If you stop complaining, we will start treating you."

When the meeting was adjourned, MAJ Z gave his case file to Ms. S and told her, "He's all yours. You had better call him everyday or he will complain."

Sean asked Dr. X after the meeting, "Is it normal to have this abdominal pain, take percoset daily and have so much nausea?" Dr. X said, "No, it's not normal, but if the diarrhea goes away, then you will be fine."

Sean spent the night in his room throwing up.

Week Two--Hell Week Begins

Dr. X ordered a probiotic treatment. Par for the course, the pharmacy on post could not fill this prescription as the stock on hand was outdated. Sean travelled to the next town once again to get his prescription. The probiotic caused increased pain and was discontinued after three days.

Sean went to the scheduled meeting with Mr. L, but MAJ Z and COL Y were not in attendance. Mr. L told Sean that he had spoken with COL Y on the phone and she decided they would continue the course of treatment with Dr. X. The request for transfer was denied in order to exhaust all their resources first. Mr. L also told Sean, "I have spoken with your congressional contacts, so there is no need for you to call them again." Um. . . excuse me? Are you seriously telling me that I am not to call my congressional contacts?

So I called my contacts and informed them know that Mr. L had tried to ease my workload by making the calls for me. Tattle-tale, I know. Needless to say, these contacts were appalled that he so brazenly told Sean not to make further calls.

I also learned that when Mr. L returned these calls, he provided false information such as a new antibiotic was being started that day, and although the pharmacy did not have it in stock, they made special arrangements to have it delivered to Sean. Remember the taxi rides to the next town? What accomodations!

Day Five--Things Are Looking Up

Sean met with Mr. L who was in agreement with our concerns. He submitted a request for a transfer to a facility with an infection control doctor and/or a gastroenterologist. He arranged a meeting with Dr. X, MAJ Z, a case manager, and a COL Y, the hospital director. The meeting was set for the following week as it was now Labor Day weekend and a four-day military holiday.

Day Three--We're Not Gonna Take It

Day three and things were changing rapidly. Dr. X brought Sean into his office and told him that he had researched c-diff and could indeed treat him. He said further tests for the presence of infection were unnecessary as the infection is considered gone when symptoms subside. The doctor in Germany had said three negative tests were needed to confirm the absence of c-diff infection.

He switched from flagyl to vancomycin for antibiotic treatment. According to his research, the new antibiotic would clear the infection within 10 days and he would be home by Labor Day.

Dr. X did call the CDC and they recommended confinement to quarters as c-diff is infectious. Sean would stay in his room with the exception of making the 3/4 mile hike to the hospital three times a day and attending formation each morning. He was not to spend time in the medhold dayroom with other soldiers.

Dr. X also cancelled the appointment with Dr. D because he felt (with his vast knowledge of the infection) that the new antibiotic would clear it up. Sean had to travel to the next town by taxi to pick up the new medications because the pharmacy on base did not carry it in stock. As an added bonus, since he was not given the prescription through the post pharmacy, he had to call and argue with TriCare (military insurance) to get them to authorize the prescription and pay the cost.

I decided that instead of taking a "wait and see" approach, I would be pro-active and get things moving quickly. I called the offices of our US Senators and Representative for South Dakota and asked each of them to make an inquiry regarding Sean's care and possible transfer to an actual medical facility.

Within an hour, I had the name and number of a patient representative on base and a meeting was arranged between Mr. L and Sean for the next day. One thing I have learned through this experience is that nothing makes things happen like a call to the Senator's office.

Sunday, March 23, 2008

Day Two--Very Reassuring

Day two started at 6:30 AM when my phone rang. The caller ID showed the incoming call was from the base hospital. Stomach in throat, heart racing, I answered the phone. "Hello?"

"Is SSG Johnson available?"

"No, who is calling?"

"This is Dr. X. I was trying to locate SSG Johnson."

"Um. . . I'm in South Dakota, he is on base in the medhold barracks."

"Oh, yes. I will try to find him there."

Ok, feeling extremely unsure of the situation now. Shouldn't the Dr. be able to find the patient?

Later that day Sean went in for a meeting with Dr. X. During this appointment Dr. X looked up c-diff on his computer. Sean sat there as he reviewed the information on the screen and then said, "I can't treat that." Good to know.

Dr. X arranged an appointment in town with Dr. D, a GI doctor, who agreed to perform a one-time evaluation and then make recommendations to Dr. X on how to treat. Very reassuring.

Sean was sent to the ER to reclaim his medications that the staff had "found" overnight.

I was greatly concerned that there was no monitoring of fluids, medications, stools, or food intake. No one was scheduled to check on him throughout the day. He was given narcotics for pain, while in a depressed emotional state and sent to a room to spend most of the day alone. Sean said if he didn't show up for formation in the morning, then someone would come to check on him.

I decided to locate the post chaplain and ask for some assitance. I visited with him, explained the situation, and asked him to please arrange for someone to check in with Sean periodically as he was sick, lonely, and depressed. The chaplain assured me that he would take care of it. No one ever came. Approximately two weeks later the chaplain made it up to Sean's room to visit with him. He apologized for the delay, saying it was a big base and man-power was thin. Sean did like the chaplain and later made a few trips to his office and got some good reading material.

Don't Mess With My Wife

Day 1 did not leave a good impression with me for obvious reasons. I couldn't sleep last night after posting, it affects me so deeply still. We joke about it, tell the story, but when I think about the way Sean, a three-time honorable veteran, was treated it makes me physically ill. He has stopped reading the blog now because he does not want to relive this stage in his life. Can't say I blame him.

I want to take a moment to describe my mental state at this time. It was the end of August 2006. My husband had been away from home for 13 months. I had not seen him for five months, but had spent those five months hearing every few days about how sick he was. I knew he had dropped at least 40 pounds, but had not seen him with my own eyes or touched him with my own hands. I mentioned before that my husband does not get sick, does not take sick days, and certainly does not complain (that is my job in the family--one I do well, I might add). So when I hear that he is sick, in the bathroom 10+ times a day, losing weight, not eating, doubled over with pain at times it nearly drove me insane!

I have a child who does not, under any circumstances want to go to school and rebels constantly. Pierced lip, ears, breaking curfew, skipping school, fighting at home, you name it. This teenager had some serious separation anxiety issues and pushes others away just to see who will return and still be there. I have a child who was transitioning to a life in a new town with us as the full-time family. There had been a hard road for this one for such a short life. We were adjusting to each other and dealing with residual issues as well. I have a child in the middle feeling left out because one sibling is acting out and one is having difficulty with the move and middle child is unhappy with the changes. The middle child is used to being the youngest child. The youngest child was formerly the oldest child in that household. The oldest child was acting out. And while I am not a single parent (praise to those of you who are), I was very much on my own.

I was starting a new school year with a class of 26 students. Typically, I get the few students who are more challenging because I have a background in special education and previously worked with students who were emotionally and behaviorally disturbed. 2006 was no exception.

The Family Readiness Group, of which I am the assistant leader, was planning for an October homecoming for the unit. I didn't know when my husband would be coming home. I attended the meetings and helped with the preparations, but my heart ached at the thought of the soldiers coming back and mine not being one of them.

My husband just arrived in the United States, and I could not see him, comfort him, or care for him. I remember Sean calling home that first day and I think he was in tears (not that he would admit it) as he described how incredibly alone he was feeling. I sat down and bawled after that conversation. I did not sleep that night. All I could do was lay there and think, "How am I going to get him out of there?" I was feeling overwhelmed, exhausted, and in no mood to mess around with stupid people.

I don't mean to say that everyone Sean came into contact with was stupid, but as you read, you may be able to pick out a select few.

The Finest (Lack) of Care the Military has to Offer

585 miles from home. 10 hours away. Sean was back on US soil and although I couldn't be with him, I knew that he would be getting the best care possible and would soon be returning home to us. After 5 months of battling illness, Sean would be recovering and on his way home.

This could not have been farther from the truth.

Disclaimer: The military does offer top-quality care to its soldiers. However, this was not the experience we had at this particular military facility. I wish to tell our story which involves lack of care and a fight to get the medical treatment my husband deserved. Please do not take this as a generalization of all military facilties or military healthcare.

Sean arrived at his destination on August 27th, 2006. I had contacted the hosptital to see if they could let me know when he arrived. Of course with privacy policies, they could not. They did offer to give my number to the paramedics on the ambulance so that if Sean asked them to contact me, they could.

The ambulance picked him up at the local airport and transported him to the emergency room on base. Two doctors met with him in the ER. The first doctor wanted to admit him to the hospital, give him some IV fluids, and review his records. The second doctor, who will be known as Dr. X, discharged him and sent him to the medical holdover barracks.

Sean had been told in Germany that he would be seeing a GI specialist to treat his illness. Dr. X told him there was not a GI specialist at this facility. He reported that records from Germany said nothing about the c-diff infection, rather had him categorized as irritable bowel syndrome (IBS). Dr. X said there was no need for continued fluids, medication, or isolation (he had been in isolation in Germany due to the nature of the c-diff infection). He told Sean, "You're fine."

The ER staff took his medications for pain and nausea for inventory and later refused to return them. Sean was told they had "no record" of any pain medications for him.

And so begins the fight. Sean will tell you, "Don't mess with my wife."

And Now, Back to Germany

By the end of July Sean was seeing the doctor at Camp Anaconda again and trying a new medication for pain. He was dehydrated and the pain made it unbearable to eat. He had been very tired and was working frantically to get the unit ready for demobilization.

The pain, vomiting, nausea, and diarrhea were back with a vengeance. He was not able to eat or sleep. When he was not working, he was in the porta-john. The doctor said he may or may not get better if he goes back to Germany but that he could not stay in Iraq with this pain. The commander and doctor decided to send Sean to Germany and then on to WRAMC in the states.

Sean writes, "it is a bittersweet departure. . . sad, happy, scared. . . I don't know how this will affect my unit, my status within the unit, my career in the military, or my future. . . " Prophetic words indeed! We had no idea how this would affect his future.

The orders were set for Sean to medevac out on August 4th, but thanks to a COL being on base, it was postponed for three days until August 7th. This particular COL suggested to the commander that Sean should not leave Iraq without being presented with his meritorious service award, complete with ceremony (mostly to honor the COL's presence). So his trip was postponed and on August 7th there was a ceremony to present Sean with his medal, minus the COL who decided to do something else instead. Nice.

Sean arrived at Landstuhl late in the day on the 7th of August 2006. Back to the barracks, wait for the bus, have multiple tests, wait for the bus. Two days later, Sean was diagnosed with clostridium dificile (c-diff) infection. His doctor began treating him with flagyl, an antibiotic that works by stopping the growth of bacteria and protozoa. The explaination for the infection was that upon discovering the salmonella infection Sean was treated with high-powered antibiotics. C-diff can occur when a person is taking large doses of antibiotics, so therefore, the c-diff developed due to the treatment for salmonella. And like the salmonella went undetected, so did the c-diff which should have shown up in previous tests performed at Landstuhl.

One week later, the doctor's decision was to continue the flagyl despite the lack of improvment in symptoms. Sean still tested positive for c-diff. At the end of his two-week stay, Sean's doctor decided to send him to the US for further treatment. Despite the recommedation from his commander to send him to WRAMC and previous conversations with the doctor regarding that possibility, Sean was instead slated to fly to the states via medical aircraft and be treated at a regional military facility.

On the 25th of August he left Germany for the last time and arrived at Andrews Airforce Base. I was overjoyed when he called me from America! At last, he was in the country and I could feel some degree of relief. I wanted to go meet him, drive, fly, run, whatever it took to get next to him. But saner minds prevailed. School was starting for three kids, one of whom was having attendance problems related to separation, and another who was just beginning her life in our household fulltime. We also did not know if Sean was contagious and I certainly had enough going on without bringing illness to the rest of us. So, we waited.

For those of you who think this has been a long and remarkable journey, you're right, but don't tune out now, for the story is far from over. There are hurdles coming that I could never have imagined. This now becomes a story of a wife who had to fight to get her husband medical care and get him back home.

Out of Iraq. . . and Back Again

On June 21, 2006 Sean was medevaced out of Iraq to Landstuhl Hospital on Ramstein Air Base in Germany. The flight was rough and Sean needed to be strapped down and was given pain medication. He had severe nausea and cramping.

The medical barracks are located on base and are approximately 25 miles from the hospital. Every morning soldiers board the bus and ride to the hospital for appointments, tests, and waiting. . . until the bus takes them back to the barracks at night.

Three days into his stay in Germany, Sean had ten different tests done with more on the way. He was assigned a primary care doctor and a case manager. A gastrointestinal doctor and an infectious disease doctor consulted on his case.

Sean says he felt overwhelming guilt for leaving his unit behind. He worried that he had not finished his mission. He wanted to go back and finish his duty, but did not have the strength.

The primary doctor told Sean there was a 14 day window in which they could treat him, or send him home to the states if they were not able to treat him. The consideration was to send him to the states for six months of treatment at Walter Reed Army Medical Center in Washington, DC. My husband wanted to know how he could get back to Iraq. He was told to wait for additional test results before they discussed that option.

Now my husband is in a foreign country, alone, on narcotics and barbituates, sick and exhausted, depressed, feeling guilty about leaving his unit, angry that he is sick, anxious about what will happen next, and he sits and waits for the bus. . .

After one week in Germany, the doctor decided to perform a colonoscopy and an endoscopy. The scopes aggravated the pain, and the doctors suspected IBS. Nothing else abnormal was noted.

Twelve days in Germany and Sean writes that he is on the mend. Hallelujah!! The pain is mostly gone and he is able to sleep better. He says he is not rushing things, but is hopeful. Music to a frantic wife's ears!

Sean spent the 4th of July in Germany and then returned to Camp Anaconda, Iraq. I don't know how to describe my feelings at this news. A. I was thrilled that the worst was over and he was feeling better. He was sounding like himself again and was optimistic that he would finish his mission and be home in a few months. B. My husband was going back into Iraq. Back to Iraq. Back. Not back to the states, but back there.

On July 10th Sean was released for regular duty. All tests came back negative. There was no explanation for his symptoms. The doctor said there was nothing more he could do, so Sean could go back to work.

Monday, March 17, 2008


I have been doing a great deal of research these past few weeks and that has slowed down my posting more than I would like. However, I am learning about what is happening with my husband and within our family.

I have added links that I have found useful in my research. I especially like the article on Living with Military Fathers with Post Traumatic Stress Disorder (PTSD). I have not found any similar articles for explaining Traumatic Brain Injury (TBI) to children. I may have to write one myself. The Quick Guides to TBI and TBI/PTSD are also helpful for a snapshot of the conditions.

In addition to posting here, I am working on a comprehensive document for our family members to help them understand the conditions and how they affect our family. I plan to include that here when it is finished.

It is my intent to tell our story, but to also assist others in similar situations. We have said from the start that if we are virtual guinea pigs in the process, then let us be able to help others struggling to find answers as well. If there is information you would like, please contact me and I will try to fulfill your request.

Tuesday, February 26, 2008

This Can't be Normal

So it happens to everyone. . . but can this be normal? I was worrying on my side of the globe, but the little information I had didn't paint the entire picture.

In mid-May I had a very anxious night. I was unsettled and could not put my finger on the reason. That night I began tearing up the dining room carpet to see what was underneath. People who know me know that when I am anxious I tackle big projects that may or may not have any purpose. Did I want to tear up the carpet? Eventually, maybe to refinish a wood floor or put down new carpet. Did I really want to tear out my carpet right now? Probably not, but something inside me kept tearing at the edges and pulling it back a little more. After discovering an acceptable wood floor, I stopped and folded laundry before going to bed. The carpet did come up in the summer of 2007 and we laid a laminate floor instead of refinishing the existing one.

Day 1
Early the next morning I checked my email. I learned that my husband had been admitted to the theater hospital for stomach pain. He was given fluids, antibiotics, and pain medication. The doctors suspected a bacterial infection, but scheduled a colonoscopy to check things out. WHAT?? My husband was in the hospital and I couldn't be there? That about drove me nuts!

Day 2
The next day test results were positive for salmonella in his system, most likely due to improperly cooked food. He was given a GI cocktail to flush out his system, 1000 mg Tylenol, and a mixture of high-powered antibiotics to kill the salmonella bacteria.

Day 3
Sean was struggling with pain and nausea, so he was sedated for most of 24 hours. The nurse said since his infection was severe it would likely take a while for him to start feeling better. Diarrhea, pain, cramping, and dizziness continued.

Day 5
On the fifth day in the hospital the doctor suspected that Sean’s gall bladder was infected from the salmonella poisoning. He ordered a CT scan to see if it should be removed.

Day 6
Sean was taking medication for nausea every four hours until it was under control. The Tylenol was taking care of the pain, so the doctor decided to send him back to his quarters and back to work the following day. He was told if he had pain or symptoms got worse during the next five days he was to return to the hospital. In five days he dropped from 200 to 175 pounds.

It was frustrating for Sean to go back and forth with no clear-cut decisions. 1st there will be a colonoscopy. 2nd there will not be a colonoscopy. 3rd there will be a colonoscopy and an endoscopy. 4th no scopes. 5th you will have a CT scan. 6th no scan is necessary. You are fit for normal duty, come back if you have any more problems.

Two days after his release from the hospital Sean was doing his PT on the track (couldn’t run or jog, only walk) when he encountered the surgeon from the hospital. Sean described his continuing pain, nausea, and diarrhea. He told Sean to come in to the hospital the next morning for a CT scan and a consult with an infectious disease doctor.

Sean returned to the hospital and met with the trauma surgeon. He ordered lab work and a CT scan. Blood work and CT scan were normal, his organs were all healthy. Sean met with the surgeon, infectious disease doctor, and gastroenterologist. They changed some of his medications which helped with the nausea and vomiting some, though the pain persisted. Of course, he was ordered back to normal shifts right out of the hospital with no time to recover or sleep.

For the next month Sean went to sick call, and worked normal shifts in between bouts of diarrhea and vomiting. He grew weaker and weaker, unable to sleep due to abdominal pain. Finally, in mid-June his commander took him to the doctor and insisted that something be done. The doctor said they could do nothing more for him at Anaconda, so they would send him to Germany for an evaluation and then home to the states.

Sean was tired, sick, and broken, but still he asked his commander, “Can’t I come back to finish my duty after I’m treated?” That’s dedication to duty.

Monday, February 25, 2008

It Happens to Everyone Here

Sean returned to the Iraqi theater in the beginning of April 2006. Within a few days of returing, he was sick. Sean very rarely gets sick. When he is sick, he pulls himself together and goes to work. In the 12 years we have been married, he has maybe called in sick 2 times. He gets upset with me when I take a sick day (I have no immune system--I catch everything). So when I say Sean was sick, I mean he was very, very sick. He was vomiting and had diarrhea constantly. He went to see the doctor who told him he was dehydrated. They gave him fluid, prescribed Pepto Bismal, and a clear liquid diet for 72 hours. He was miserable and hungry. I can't imagine the discomfort. Far from home, in the heat of Iraq, no indoor plumbing, just porta-johns. Yuck!

Lots of soldiers get symptoms like these due to poor water supply, improperly prepared food, and changes in eating habits when returing from the states to theater, so this is nothing remarkable. In Sean's case, the doctors guessed that he was getting sick from eating iceburg lettuce. It was the one source that he ate on a daily basis that could have been washed in questionable water.

Sean made multiple trips to sick call in late April and early May as he was rapidly losing weight, and no relief from the diarrhea. The doctor tried Prilosec to see if there was an ulcer, but that did not help. During this time, Sean dropped almost 40 pounds. He continued to work as much as possible. He did not want to let down his unit.

An Aside

Sean plans to give his perspective on his tour in Iraq. It will be added when he is ready. For now, I will continue with the story from my point of view.

Saturday, February 23, 2008

R & R

Sean came home for two weeks R & R at the end of March 2006. Murphy's Law in full effect, there were no flights into Aberdeen. He could either wait two or three days in Kuwait, or fly into a neighboring town. Hmm. . . choice B. Final answer. Sean's flight was scheduled to arrive at 10:30 PM two hours away from home. E and I made the drive in ridiculously thick fog. The entire way there I was dialing 511 to see if there was a change in road conditions or weather. I was certain that the plane would be delayed, or turned around and we would have to wait to see him. I had been planning this day for weeks. What would I wear? Was the work done around the house? Did I stock the fridge and pantry with his favorites? Were things ready at school for my substitute? How much longer would this take?!

Truly a miracle, one mile north of the airport the fog lifted. Not just lifted, but crystal clear count-every-star-in-the-night-sky lifted. We waited in the tiny airport lounge, looking out the windows and searching for a sign of a plane in the sky. When the plane finally landed, the rush of joy and excitement was overwhelming. We watched the passengers climb down the stairs and walk toward the airport. Sean was somewhere in the middle. At first I was intent on each and every person coming toward us. Once I caught sight of him in his ACUs, carry-on in hand, I can't remember much else. I know that E beat me to him. She hugged him for the longest time. It was wonderful and excruciating. I wanted it to be my turn! When he embraced me I melted. I smiled. I cried. We were both shaking.

On the drive home it was hard to keep my eyes off him and focus on the road. I watched him doze and was just so happy to have him next to me. The fog had not lifted in any of the surrounding areas, so we drove home in the same conditions. As it turns out, had Sean been scheduled to fly into Aberdeen, his flight would have been delayed or cancelled.

During Sean's time at home he caught up on some sleep, walked with the dog, cleaned the gutters, visited the FD, and spent time with us. He thoroughly enjoyed having the three kids around and trying to catch up with what was going on in their lives. We took a couple days to ourselves as well. We even found time to attend the annual Home Builder's Show (Sean's idea, not mine). I was in heaven with him at home. It was amazing to lay next to him in bed each night, or sit next to him on the couch and watch a movie. If only it would never end.

Once again we took Sean to the airport and said a tearful goodbye. The security at our tiny airport is pretty strict, so the attendant at the counter took it upon herself to search Sean's military duffel bag (he was in full uniform). In basic training soldiers are taught to fold and roll each item a certain way to insure maximum items will fit in each bag. This woman did not go to basic training. She asked Sean to repack the bag after she had searched it. Sean told her, "You took it all out, you put it back in." Then he went through the security point, removed his boots for inspection, and was trapped behind the windows, just out of my reach. My husband was gone again.

Saturday, February 9, 2008

Camp Anaconda, Iraq

Sunrise over the Guard Tower

Palm trees outside the wire

Sean's bunk area

Hootch Sweet Hootch

Working in the ASP

Sean meets Jesse James of Monster Garage

Sean driving the gator

Sean arrived at Camp Anaconda, Iraq in early November 2005. He shared a "hootch" with another soldier. They had trailers set up with three rooms, and two people to a room. Not a bad set-up compared to his previous deployments spent living in tents.

I did my research and found out the dangers of living in this camp. This location is nicknamed "Mortaritaville" for a reason. When we talked, we didn't discuss the dangers. But on the days when no calls or messages came, my imagination ran wild.

The following are excerpts from emails I received while Sean was in Iraq. I will try to get him to add some personal dialogue as well.

November 2005

I have settled in. . . have a bunk and a locker. . . lots of sand here. . . the sand is much worse than flour and gets into and stays in everything. . . I have been working every day now on shift from early morning (still dark) to mid-afternoon so not too bad.

I am not outside the wire in extreme danger although this place feels and acts like a pressure cooker out of control.

December 2005

It is mid 70s and low 80s during the day and in the 50s at night. . . I work in an ammunition company and oversee operations and inspect ammunition to see if it is good or not.

We eat normal food over here. . . same as home sometimes. . . there is a variety: Mexican night, Indian night, cheeseburgers, corndogs, tacos. . .

We have very heavy gear. . . a protective vest and kevlar helmet that together weigh about 100 pounds that we wear a lot of the time. . . we also carry weapons and ammunition with everywhere we go, even when we work out at the gym or shower.

I will be working on Christmas so that the younger troops can be off.

I had my first day off yesterday. . . got some sleep. . . that was good.

Jesse James was in Anaconda doing the last show of Monster Garage forever. They came to the ASP (Ammunition Supply Point) to get some parts for a humvee he is making over. . . if you want to get a glimpse of Anaconda, tape the show. . . I got a picture with Jesse James last night at the education center. He was there emailing home at the same time I was checking my email.

Man is it cold here. It has been in the upper 20s and low 30s at night and half of the morning for the past week. You can see your breath and there was a thick frost the other morning. I'm cold even wearing long underwear, neck gator, stocking cap, gloves, and my fleece coat. Of course it does not help that I shaved my head last night. I told the commander if I wanted South Dakota weather, I would have stayed home with my wife and been warm.

January 2006

Yesterday it rained for most of the night and part of this morning. It was a total downpour. Everything here was very wet and muddy or soupy. Our forklifts just slide around. We had an hour or so of fog and it was as thick as pea soup. . . there is mud everywhere and you slip and slide. . . the mud sticks to everything, shoes, boots, pants, coats, yuck! Well, at least it warms up during the day.

My days off are spent sleeping or catching up on sleep. . . I now automatically wake up at 4:00 AM before my alarm rings and shut it off before I head to the shower in the freezing cold weather. . . but at that time in the morning the water is still hot. . . then to breakfast and work which I don't leave until 1700 at night.

I find myself often counting back nine hours to figure out your time.

June 2006

Two days ago it was 123 degrees. . . yesterday it was 126 degrees and in category black by 11:00 AM. . . today at 12:00 PM it was 121 degrees so it is stifling hot. . . not much appetite lately, but I'm trying to eat. . . also can't sleep but 2 or 3 hours a night. . . we are fairly busy at work. . . last two days feel like a blowdryer on high. . . takes your breath away.

Friday, February 8, 2008

From Kuwait to Iraq

Sean in full Battle Rattle before boarding the plane in Kansas
Camel Herd in Kuwait

50-Man Tent

Sean travelled to Kuwait in mid-October 2005 and arrived at Camp Buerhring.

While in Kuwait, Sean lived with 55 men in 50-man tents. No heat or air. Uncomfortable cots. On base was a tent that housed a gym where they would play volleyball for 2 hours a day and workout. A movie tent ran 24 hours a day as did the internet cafe. Uncomfortable cots, nervousness and anxiety, and missing their families made it difficult for many to sleep, so many soldiers would spend time in the movie tent and internet cafe.

Before the unit could move forward to Iraq, they had to complete a rigorous training routine. The unit participated in had PLS (palletized load system) truck training, forklift training, moving concrete barriers, and pallates of water bottles. They held "Forklift Rodeos" to hone their skills. They loaded vehicles desinated as "excess" to be shipped back to the states. They took a camping trip to weapons ranges to drill on combat ambushes, checkpoints, and close quarter combat training. They slept in large tents and it got brutally cold at night. They encountered their first camel herd on this trip.

The phones were a 20 minute walk from Sean's tent with a 15 minute wait to make a call. Sean called every three to four days. I counted myself very fortunate that my husband would find time to contact me at the end of his busy days. Some wives only heard from their husbands every couple of weeks! Others got messages or phone calls every day. My grandmother told me after seeing a news bit about emailing troops stationed overseas, "When your granpa left for WW II, I didn't get to talk to him for three years!" She thought we were very lucky and very spoiled.

Email was spotty at first, but improved during his stay (in Iraq). Sean would walk 30 minutes to the internet cafe tent on base, wait up to 1 1/2 hours and email me every few days. Internet service was slow and unreliable. There was not always time to read or send messages once he had computer access. Here is a sampling of emails I received from Kuwait.

94 degrees today. . . very bright out. . . needed my sunglasses all day. . . you can relax for a little bit as I am safe for the moment.

There's not anything here but sand and tents. . .

It is warm here during the day 110 or higher.

I am extremely proud of you for taking on the kids at this difficult time in their lives. . . thank you from the bottom of my heart.

I really need to focus because I want to come home safe and I need to bring everyone else home safe.

It has cooled down a bit to high 80s and at night it gets down to 50 or 60 and can be cold. . . I already sent my sleeping bag to our final destination. . .

The food is not bad here and there is a big selection.

I go to bed a 11:00 and get up at 3:30 every morning because I can't sleep. . . it's cold. . . the cot is not comfortable.

Putting Out the Flames

For every homefire you burn, there is a hotspot sure to pop up.
I learned this lesson all too well while trying to manage a home, family, job, and long-distance relationship with my husband.
The short list:
  • bed bugs (they are more than just a cute rhyme at bedtime--a bonus parting gift from the hotel in Denver)
  • exterminator for pesky bed bugs
  • new living room furniture, matress and box spring thanks to pesky bed bugs
  • run-in with a deer on the highway (he ran into me)
  • new doors on the van thanks to renegade deer
  • runaway child (we'll protect privacy here)
  • multiple body piercings (your father won't be happy to see THAT)
  • school attendance problems and failing grades
  • missing car (multiple occasions--had to remove the tires a time or two)
  • influenza A with all of us home for a week
  • my father's brain tumor, removed twice, and triple bypass surgery
  • traveling from family events in horrible weather where I swore I would NEVER drive again once Sean got home
  • traumatic events in my step-daughter's life
  • my step-daughter moved in (a blessing we had long awaited)
  • death of Sean's grandfather
  • flood of May 2006 with inches of water in the basement
  • demolition of the basement due to water damage
  • the flat tire dilemna that plagues us began--I don't know how I can drive over that many nails!
  • math homework meltdowns that required calling a friend for backup
  • 3 teenagers in the house (you can use your imagination here)
  • mysterious hives and canker sores (an entire mouth full)
  • smashed rear window in the car (an incident at the skatepark)
  • leaky ceiling when the snow melted
  • leaky ceiling in the basement when the toilet overflowed

My doctor thinks my headaches are due to stress. Really?

Keeping the Homefires Burning

E and S wait at the airport to welcome home a soldier October 2005
Susie, S, and Melissa after walking in the Gypsy Day Parade October 2005

We moved through our day-to-day life slowly at first, and then gradually making adjustments to our new "normal." The kids had trouble with dad gone, but for their privacy, I'll suffice it to say school was not going well, there was separation anxiety, and they started sleeping in the living room. When Sean deployed to Hungary in support of Operation Joint Guard in Bosnia in 1997, J was 6 and E was 5. While he was gone, during the night they would both end up in bed with me. I woke up like a human sandwich each morning. Sean left for Kansas, and 14 and 13 year olds moved to the living room that night. A little too old to sleep with mom, but still needing to be nearby.

School started, and that occupied most of my time. The routine was very much needed after the rollercoaster summer. It was difficult to go to work most days and face people who cared very much for me, but asked questions that stabbed at my heart. "How long will Sean be gone?" "Have you heard from Sean?" "Do you know where he's going?" "Is there anything I can do?" Sure, you can bring my husband home and we can all go back to our lives. The outpouring was amazing, and I work with an incredible staff, but it was heart-wrenching. Most days I wanted to hide away and not talk about him. I wanted to create this world--the here and now--and that world--the one when Sean called home, or I got an email.

In a way, those two worlds developed on their own. I went to work and about my daily business. Thanks to my teaching partner, Jessica, I spread news about Sean through the lounge without having to share most of it first hand. She made sure people knew what was going on. That was a lifesaver. When I needed to rant and rave and cry, she was there throughout the day. Thank you, Jessica.

I formed close friendships with six wives and their children whose husbands were also deployed with our unit. We were a family. Everyone took care of each other and our children. This is where it was safe to talk about Sean, and share my feelings with people who knew without a doubt what it was like to be alone. To worry about my husband going around the world to a dangerous place. To struggle with children who missed their dads. To complain about the unfairness of it all, without feeling like a whiner. This is where I could let my guard down. We ranged in age from 23-45, had 18 kids aged from 6 months to 25 years old.

I have to say that I think this group, my army family, is what got me through. We called and emailed daily. There were times when no one wanted to be at home, but we didn't know what to do, so we would end up at Wal-Mart, kids in tow, and do our shopping together. Susie and I developed the habit of grocery shopping together as it was a task neither of us wanted to tackle, but when the kids pointed out we were two days without milk, bread (insert staple) it had to be done.

Through the next year we went to the park, swimming, movies, out-of-town trips, emergency rooms, school programs, BMX, baseball and soccer games, and any activity you can think of as a group. If Susie's son had a BMX race, we were there. When K was in the school play, they came to watch. No one wanted to be alone, or at home, so there was always the call, "Meet me at the park." "Meet me at the mall food court." "These kids are driving me crazy, come over for supper."

We planned group trick-or-treating, celebrated birthdays, did our Christmas shopping en masse, had 4th of July cookouts, Thanksgiving, Christmas, and New Year's parties. We had an enormous Easter egg hunt (12 of our kids present).

Our FRG took a trip to Denver for an FRG Academy in July 2006. Talk about an amazing trip! I don't remember when we had laughed and had so much fun. Six women, no children, out of town. It was a blessing. Our group was presented with an award for service. Susie won the volunteer of the year award. It was incredible! It was as if leaving town gave us the freedom to relax and enjoy ourselves. Of course, two of the babies at home got sick while we were gone, so there were long distance phone calls from grandmas, to doctors, and pharmacies.

We also ran the FRG fundraisers, planned and hosted the picnic, Christmas party, and various other activities for family members. We made monthly calls to check in with family members. We sent care packages to the soldiers each month. The post office ladies were awesome when we came in laden with boxes. The customers were not as excited when they saw our piles, especially when we shipped 118 small Christmas trees, stockings, and other goodies in 30 + boxes.

My husband still marvels at the depth of our relationships. "How do you know so much about the Commander's wife?" Well, I spent a year with her day-to-day. Basically, she was my "you" while you were gone.

He laughs when the phone calls come in, "Can you pick up my child at day care? I have to work late." "If you're going to the post office, can you stop and send something for me? The kids are sick." "As long as you're going to the dry cleaners, can you pick up my husband's uniform, too?" We are used to doing this for each other, it seems strange NOT to do these things for each other.

There are fewer of us now that the soldiers are home. Many people go back to their previous lives and move on. But for those of us who still get together regularly, there is a part of our families that have been changed permanently. I went to my family gatherings this past year, and I missed my army family with whom I'd spent them the year before.