Thursday, June 30, 2011

The Man Nobody Else Knows

I'm not gonna lie. It's hard. Being his wife is hard. Not because of the reasons you may first think, though. What's hard is seeing him go through all the pain, the loss of ability and the emotions. I did not understand any of this until I lived with him. When we were dating, and even engaged, we lived in different homes. In fact, because he was in the Warrior Transition Unit at Ft. Sill when we got married, we didn't actually live together for a while after we got married. When he completed his retirement and came home, I was working so many hours that I did not see what he was experiencing. It wasn't until we moved to the town where my stepson lives, and I switched to working from home, that I really began to see it all.

More days than not, he struggles to get out of bed. He starts his days in tremendous pain. Some days the pain begins to ease, and some days it does not. When his parents call him, he does his best to hide the pain in his voice. He seldom tells them what kind of day he is really having, because he does not want to worry them. When he talks to a sibling or friend, he hides it from them. He feels that he does not want to place his burden on them. And when his son is with us, he hides it as best he can from him. He does not want his son to experience the hurt and concern of his daddy dealing with the pain. But when you live with someone and are around them almost 24/7, you can't hide it. I get to see the true him, and I am so thankful for that. It has helped me better understand how I can help him. It makes me understand him, and gives me the drive to fight for him.

The pain has been severe lately. We were hoping to do some activities with his son on the days that we got him this week, but the pain keeps us from it. That may be good because we have brushed up on math, done some creative activities, and all cuddled up for movies on the couch here at home. We love that bonding time with him, so there's always good in that. However, the plans we had were ones my husband was excited about doing with him. Luckily, though, they are things we can do another day.

There are so many more problems that factor in to our plans than just pain. For example, last week we took my stepson to ride a train about 2 hours away from our home. While on the train, Tim got to hurting so bad that he struggled to conceal it from his son. He hid it the best he could, and eventually dozed off toward the end of the ride. We got in the car to drive home, and he attempted to drive at first. Once we got on the interstate, however, he had to pull over and let me drive. Fatigue sets in so often, and it hits him when he's not expecting it. He often has to stop what he is doing almost immediately.

This morning he woke up in pain, but it eased enough after about 2 hours that he decided to join me in the yard for some yard work. We worked for an hour or two, and then he had to go back inside. He has been on the couch ever since, and much of the time has been spent in alot of pain... but he still did it!!! These are the days that mean so much... when he is able to do "normal" activities. Though he does not last as long as he once could, he amazes me at just being able to participate at all. I am so proud of the way he pushes himself when he does not feel like he can. I say it all the time, and I'll say it again... he's my hero!

My favorite part of taking care of him, especially on his extremely bad days, is knowing that... 1) I am easing his pain by easing his brain, and 2) I know a man that nobody else knows. He opens up to me like he does no other. There is nobody in his life who has ever seen what I see and experienced what I experience with him. That makes me feel special, and it makes me know that what I do to help him matters. That means so much at a time when I feel so helpless because I cannot make the pain go away.

Monday, June 27, 2011


So... I am finally getting around to my NYC story. It was one of the most incredible experiences I have ever had. I came back with a deeper understanding of my husband and what he goes through. I also learned of many different benefits he is entitled to but has been overlooked. I have been working hard since my return trying to dig for those benefits. Some of the struggles he encounters could be made much easier with the help available, but he has never been informed of the opportunities. As his wife I believe it is my job to make these happen.

The weekend in NYC was therapy/education filled. Talking to the other wives of wounded warriors helped me better understand that what I experience with my husband is commom with a wounded warrior. PTSD is all too real, and I gained a better grasp on it while there. Many things that I thought were just a part of his personality I have learned are PTSD related. I am very blessed that my husband is so devout in his Christian faith, which tremendously helps alleviate some of his symptoms. Learning how to handle them on my end, though, is making a world of difference.

His spinal cord injuries and nerve damage are not only physical inhibitors, but they are also mental inhibitors. And there are many explanations that I received for symptoms that we have been unable to understand. We have decided to schedule some more testing that will hopefully give us some answers.

In addition to learning more about my husband, his injuries and his benefits, though, the purpose of this weekend was to attend a writing workshop at the Writer's Guild of America, East. They broke us into small groups of five, and each group was assigned two mentors. We were the lucky group who received three mentors, and we were so blessed with the ones we got.

Eric Bogosian, otherwise known as Captain Danny Ross on LAW AND ORDER: CRIMINAL INTENT, was incredible in his wisdom, insight and understanding. The man has lived life, and he was not afraid to share that with us. He listened to our stories, and he encouraged us as writers to pursue them. In addition to his role on LAW AND ORDER, Eric also starred in UNDER SEIGE II as well as numerous Broadway shows, and he is a successful novelist.

Marsha Norman is an instructor at Juliard, an incredibly successful novelist, and an even more successful playwrite. She spoke to us on an emotional level, and she fully immersed herself into our stories. She guided us in a way I cannot explain, and her guidance helped tremendously.

John Markus formerly wrote for THE COSBY SHOW. His list of successful writing jobs are far too many for me to remember, but that is the one that stuck out the most in my head. He also wrote jokes for Bob Hope, Conan O'Brien, and other late night comedians. He was a kind, honest man who helped us look at our writing from different angles.

The caregivers in my group touched my heart in ways they will never know. I was blessed with an incredible group of ladies, and I feel that I can call on them at any moment. We encouraged each other, and I believe that we all truly believed in each other's abilities. We will motivate and encourage one another until we return to NYC in November with (hopefully) our finished, our close-to-finished, work.

All in all, I experienced a weekend far greater than anything I could have imagined. The donations people gave blew my mind, and the care and hard work that Anna and Michelle put into making sure every single detail was perfect was unbelievable! Disney donated tickets to Broadway shows; Wounded Warrior Project flew us up there, gave us hotel rooms, and fed us 3 dinners, a lunch and a breakfast; the Writer's Guild provided us with a location for the workshop, breakfast and lunch two days, copies of screenplay scripts, snacks throughout, and far more that I am forgetting; every mentor donated their entire father's day weekend to us, one even missing the Tony Awards for this event, where he won two Tony's; and a software company donated a copy of "Final Draft" for each of us, software worth approximately $200. I am still in awe, and I have now been home for almost a week. All of their hard work just for us motivates me to work hard to create a worthwhile piece from this. So... I'm off to writing....

Thursday, June 23, 2011

I Hurt Because He Hurts

I hurt. Not physically, emotionally. I hurt because he hurts. My husband is so tough and pushes through so much. He tries to do things that medicine says he shouldn't be able to do. He is determined to conquer as much of life as he can. When we went to Colorado last winter, he attempted snow skiing. Granted, he ended up riding down the mountain in a ski patrol snowmobile... which made the rest of us jealous... but he tried it. At the lake, he tried tubing. We took the boat slow and avoided bumpy waters, whereas he was formerly the type to aim for the bigger bumps. But he did it. He pushes himself harder than anyone I know, and he toughens up and tries to pretend there is no pain.

Today, he can't. Today is one of those days that makes my heart cry. I love this man more than anything, and seeing him in pain so intense he can't move is nearly unbearable. I try to be strong for him. I don't want him to see me weak, because then he will try to hide his pain. I want him to feel relaxed... to know that I want to help him and that I'm here for him.

He laid on his right side this morning. I knew immediately it was bad because, even on worse than normal days, he lays on his left side and wraps me in his embrace from about 3 AM until I get up. Today he couldn't. I got up and around, and I noticed he was still laying on his right side a couple of hours later. He hadn't moved. As I went to check on him, I saw the look on his face. I knew it was bad. His pain was so excruciating he could not move. Usually I can help him roll onto his back and then sit up, but today he couldn't even do that. I asked him if he wanted me to raise the bed so it sits him up, allowing him to get off that right side. He couldn't handle that. So he lays there.

Today is bad. Today he can't function. Yet through all this pain, I thank God that my husband, my hero, is here to feel it.

Tuesday, June 21, 2011

Cookie Doctor

Today was our monthly appointment with the pain management doctor. I think we have found a new one, but we have to stay with this one until we can get everything set with insurance. I'll let you know how it goes when we get to see the new one.

Today, though, I made the mistake of posting on my facebook status that I was "on my way to the cookie doctor." I actually did it to get a giggle out of the people who read the cookie post about that doctor and the friends of mine who knew the story. What I didn't realize is what that would sound like to those who did not know the story. If you missed it, you can see the original story here:

Needless to say, I got a few humorous comments on that status update.  :-)

The doctor appointment went good. They actually wanted to do an injection this time, but we were nervous about the cleanliness of the place, so Tim passed on the opportunity. We will just wait until we get to the new doctor. The doctor was more alert today... the most alert I have seen him thus far. He did not seem to be partaking of the meds as he usually does. He asked a few questions, signed the prescription the nurse handed him, and we were out.

So..... NYC!!!!

It was INCREDIBLE!!! The people I met, the things I learned, and the amount of focus it had on my husband, made it one of the greatest experiences of my life. Because there is so much to say about the trip, the wounded warriors and the caregivers, I will save that for another post.

Tuesday, June 14, 2011

Doctor and NYC ~ Totally Unrelated

Update on the Pain Management Doctor:

We found a doctor who was highly recommended to us. This fellow is known for actually working to manage the pain, not just mask it. We were so excited, made the call yesterday.... and he does not accept our insurance. Boo! So, back to searching. Hoping beyond hope to find a good one soon!

New York City:

On an exciting note... I get to go to New York City this coming weekend! I began writing for online publications last year. It allowed me the opportunity to work more from home so I can be there for my husband when he's having a rough day, and it allowed both of us to move to the town where my stepson lives so we can be more involved. He was at a point in his life where it was vital for us to be nearby.

My career aspirations were to eventually write books. Taking this job for these online publications was a good foot in the door. Things have evolved since then, and my future is definitely on the upswing as far as my career is concerned. I have many doors that are continually being opened. Last month I learned that I was being offered the opportunity to attend a writing workshop in NYC... all expenses paid to NYC for a 3 day event. I could not believe the chance I had been given! My husband and stepson were hoping to tag along, but we eventually decided that it would be best for me to fly this one solo. I really wanted to get the most I possibly could from the weekend and fully focus on my work while I was there. We also knew that it would probably be our only vacation with my stepson this summer if they went, and they would have to experience it all without me since I would be in the workshop all day. So we're making other vacation plans with him, and I'm heading up to NYC alone. My thinking cap is already being placed on my head, and my focus is strong. I am so excited about all I may learn this weekend!

Monday, June 13, 2011

Daily Tasks

Saturday was the perfect day for a nap. As Tim worked on his project for school, I took a little nap. That little nap turned into three hours, something I very seldom do. I knew that meant I would not be able to sleep that night. At 12:30am I began painting our kitchen. Crazy... I know. Tim went to bed at about 2am, and I told him that when he woke we would be living in a whole new house.

At 7:30am I could hear the dogs in the bedroom ready to go outside for their morning jaunt. I opened the door to let them out, woke Tim up with a kiss and encouraged him to come see the new house in which we now lived. He got up just to please me because he knew that I had been up all night. As he walked in to the kitchen, I could tell it would be a bad morning. He saw the paint on the walls, made a fuss about how good it looked in appreciation for my work, and then did his best to make it to the couch to lie back down. He got frustrated because he had wanted to get some yard work done before church, but now he didn't see how he could even make it to church.

He rested for awhile, hoping that would ease the pain. A few hours later he got up to move around, and then went right back down. All day was difficult. Then, Monday morning came along and he popped out of bed before me, got dressed, had his coffee and went out to do yard work. It is absolutely amazing the difference a day can make!

Through it all, though, I must admit that I am so thankful for his pain. Feeling his pain means that he has feeling throughout his body. He can walk. He can function. He is alive. I thank God for that!

Friday, June 10, 2011

Focus and Discipline

I admire anybody who goes back to school after 40 years old. It was tough for me to go back to graduate school after only being out of undergrad for 2 years. I can only imagine how difficult it must be after being out for 20+ years. But, on top of that, going back to school after 40 when you are on medicine that would knock most of us on our rear ends... that's tough! I watch my husband push through this time with a strength that amazes me. For the most part, his professors are good to understand when he has to turn something in a little late because he had a bad week and couldn't finish his assignments. But he still gives it his all to try to do that as little as possible.

Right now he's in the middle of a project of designing a website. He has to write all the html codes and other codes that I do not understand. His medicine causes him to have difficulty focusing, yet he'll do what it takes to regain his focus and continue. He sits at our kitchen table for 8, 10, 12, and sometimes even 16 hours a day working on his projects. I use our home office for my work, so he sits up there so he does not interrupt me. He is exhibiting a discipline that deserves my respect... and that he gets.

Monday, June 6, 2011

Back in Business

I got my computer fixed, and I'm back in business! It's amazing how much we grow to rely on these machines that we seldom used 15 years ago. I can remember being in college and thinking of how cool it would be to have a laptop. You were a big deal if you had a laptop. I saved up and bought my own desktop so I wouldn't have to go to the computer lab all the time. I thought I was high and mighty because I had a desktop computer, but I still dreamed of a laptop. Now I can't seem to function without my laptop.

With my husband going to school through an online university, and me working primarily online, we are glued to our computers. We love to travel, camp, visit relatives, etc., so we invested last year in MiFi. We now take our internet with us anywhere we go. It still blows my mind that we can take our camper up to the lake, and sit outside around a campfire while we work.

On to my hubby... The past few days have been good days. He's had problems here and there, but overall he has been feeling good. Those are the days I treasure. We're still searching for a new doc, and hopefully we can find us a good one soon. One of my best friends whom I trust whole-heartedly is searching for the name of a pain management doctor with whom she had excellent results. She said he actually "managed" her pain as opposed to "masking" it. I'm praying that we are able to find long-term relief soon. Until then, I'll keep getting practice as an unofficial massage therapist on his problem areas. (I can't lie... the more excuses I get to touch him, the better. So my massaging him is somewhat of a selfish thing on my part, too.)

He is sound asleep as I write this, so I think I will go join him. Goodnight all!