Monday, December 23, 2013

Words that can't do justice.

Over the past few months I've been only slightly aware of my sadness, anxiety, and needs and have been watching myself wondering what can I do about it? What can I write about it? What do I need? What is wrong? And because I couldn't come up with an answer, I haven't written anything about it here. Instead I've been distracting myself from my feelings by getting involved in other people's drama (I'm learning that I do that often). I am going attempt to just muddle through it today because I think it's time.

I don't know how many years it will take for me to stay aware of the here and now of my new life with this new Dean. I seem to have thoughts in the back of my mind that if we have a change in our life it will somehow change our life or change Dean or change our relationship or change my abilities to cope with it all. I don't know if I necessarily expect anything specific but I am looking for improvement. I guess I do get some "change" but only of scenery and the illusion that the transition period is bringing some relief when it was only a transition. What I mean by that is when everything changes, routines are up in the air, moods are up in the air, everything is up in the air and since that's a break from the norm I let myself hope that when everything settles down it will all settle nicely in a more manageable way which will bring some relief. But then I'm awakened by the reality that even when things are up in the air underneath it all and when it all settles back down, it will still be the same. I will still miss my husband and our relationship, I will still get frustrated with stupid TBI and confused with stupid PTSD!

I've been swirling around with those feelings and thoughts for a few months now. I go back and forth between false hope and distraction and think "What do I need"? "What can I say"? I don't know how to answer the typical question I get which is "How's the new house"? I mean, there is the response that everyone wants and that response IS true but it's certainly only a minuscule part of the truth and that is ~ The house is great! Life here is awesome! Dean's doing well! But the rest of the answer to their questions is ~ The house needs so many little things that will take us years to accomplish because Dean moves at 20 mph and he just can't get to everything. I will need to become a damn contractor myself so that I can do some of these things. Life isn't awesome, it's just in a new location and the same things suck. And Dean's overall health and abilities aren't better, they are but they aren't! It's just more complicated and no one will understand anyway. So...I give the answer people want to hear while underneath I'm alone with needs that I don't have words for.

When average folks hear about how this new house brought work along with it, I fear the response will be along the lines of "Well, what did  you expect, you bought 18 acres"! As if I was not aware of what I was doing? I'll tell you that no matter what house we would have bought, whether a condo or a 1000 acres, I can't escape Dean's TBI/PTSD. His symptoms will never go away, they may change depending on where we live (some symptoms get highlighted while others are easier to cope with and vice versa) but where we live won't cure him! I think people expect a cure because TBI/PTSD symptoms are affected by the environment. But when it boils right down to it, unless you live it, you won't understand. It's like trying to explain colors to a blind person or sounds to deaf person. I can use words that sounds like they have meanings but no words can capture the complexity of it all! THAT is ultimately what makes me feel so alone! It sucks having no one to just take your word for it and give compassion without having to understand it.

Sunday, October 20, 2013

New house and healing

Our new house is in a very private 18 acres. It's on the highway but our driveway is 1000 feet long and gains 100 feet in elevation so we are set off the road quite a bit. We can hear the road noise a little but because there is only one access road onto the property and we have an alert system installed there Dean feels very safe. Almost the entire 18 acres is forest which is what we wanted. We have beautiful, breathtaking views of mountains and tree tops. About 7 or 8 of the acres is in usable land for animals and it's all fenced and cross-fenced. We plan to live a more self-sustaining lifestyle which makes Dean very happy and like he's providing for his family again. We'll have 6 or 7 head of cattle, pigs, and chickens for food (as well as a large garden). We'll have ducks to combat the slugs, barn cats to combat the mice/rats, donkey to help carry heavy loads, llamas to protect the animals from coyotes and other predators, and goats to keep the blackberry brambles in check. Since Dean has dreamed of living this lifestyle he is so relaxes and happy here! This has definitely been the best therapy of his life!

Lots of new things going on

I haven't posted in quite some time and wanted to at least check in and give some updates.

God has had a wonderful way of answering prayers for our family! He got us away from the city for Independence Day as described in my last post :)  And then with His perfect timing, He got us into our forever home just in time for my son to start Kindergarten!

In August we were told for the second time that we couldn't qualify for a home loan until our other house was sold. Out of habit, though, we continued to look at homes for sale. One day I found a house 12 miles from the town we lived in that sounded perfect by its description (which wasn't all that odd, lots of houses/properties sound great and then when we see them, we feel like we were tricked). My daughter said "We should go see that house today". I told her we couldn't qualify so what's the point. She said "I don't know, we don't have anything else to do today?? So let's check it out". I knew from the pictures that it was empty so no one lived there. My kids and I drove down to the property, parked in front of the locked gate at the bottom of a very long driveway and walked up to take a look. As soon as we saw it we were in love! We knew this was perfect for what we needed! Unbeknownst to me, Dean had arranged for us to meet with a real estate agent the next day to look at a house up north 40 miles or so. I thought, ok fine...we can't buy it....but if he wants to look then let's do it. When we were looking at that house/shop/property he loved the shop but everything else just wouldn't fit our life or our needs. I told him that I needed to get him out to see the house that the kids and I had seen...even if we couldn't buy it, having him see it would make IT the house/property the one that he'd use to compare all future listings to! So I set up an appointment with the listing agent because there would have been no way Dean could walk up that long driveway! When he saw the place he was instantly in love and convinced just like I had been that this was perfect!!!

I told the agent that we had been told by another lender that we had to sell our current home (which is being rented out) and that didn't make sense to me but what was I going to do? I'd been told that by two lenders :(  She said "That doesn't make sense to me either, you need to talk to my lender, she's a direct lender and she's awesome"! So I thought sure, why not? On Friday I got her lender all of our paperwork for her to run the numbers and see if she could get us preapproved. We prayed all weekend - "God, You can do anything! If this is our forever home we know that You will make it happen. If this is Your will, You can do it all". On Monday, the lender called us and said "You guys are good to go, make an offer". We were ecstatic!!!! So we made an offer, they countered, we countered back, they accepted. So....we bought a house! God set everything up for us! We got a great interest rate, great timber deferred status so the taxes are low, great inspection and appraisal, equity in the home already! The blessings just keep getting better and better.

So we spent September and some of October packing and moving in and unloading boxes and we still aren't done but it's starting to feel like home. It's still weird to think that it happened, it's done, we don't have to keep searching, we're here but we will get there.

Monday, July 8, 2013

In Alaska with Samaritan's Purse: Operation Heal Our Patriots

I will start by saying that there is no way for me to put in words what this experience did for us and for me, words just cannot do the experience justice.

A couple months ago I heard about an Alaskan marriage retreat for wounded warrior couples and I applied for it. Samaritan's Purse Operation Heal Our Patriots. I chose some dates at the end of the summer and thought I could turn it down if I couldn't make it work within that few months. On Thursday we got a call from Dustin with Samaritan's Purse saying that a couple had cancelled and wondered if we could fill the opening but that we'd be flying out of Portland on Sunday. Holy moly...could we actually do this? Sierra and Jeremiah (our teenagers) would be coming out to spend the next two weeks with us the next day so they would be here to watch little Dean, we had no appointments so our calendar was free, and then...the week was 4th of July and that would be a BLESSING to miss the fireworks and be out in middle-of-nowhere Alaska! Both Dean and I have never both been away from lil Dean and this would be for 6 days, but I thought he could do it. So we accepted their invitation. Then the nerves started fraying. I was worried that we may be doing the wrong thing by leaving him with his siblings, I worried about doing something for ourselves while leaving the children behind, I worried about the possibility of the plane crashing and then lil Dean would have no parents. I was worrying like crazy! I got our affairs in order and decided to hush my fears and know that I always second guess my decisions to do anything nice for myself.Everything fell into place, we packed up and headed to the airport on Sunday morning.

We flew a direct flight into Anchorage and then loaded on a small plane that held maybe 12 people and flew out to the middle of nowhere, Port Alworth.
The only way to get there is by plane and many if not all the locals own a small plane.

As we were approaching the air strip we could see over 100 people lined up holding American flags and eagerly awaiting our arrival. It was crazy! I couldn't believe it! When we got off the plane everyone shook our hands and by the end of the crowd I was holding back tears. I couldn't believe all these people were so appreciative of Dean's service and our sacrifice, it was amazing!

We went to the dining hall and had lunch and got some introductions. One introduction was to the famous world renowned French chef, Jean Claude. He had been the private chef for Frank Sinatra, Elizabeth Taylor, and Jackie Kennedy. This man's cooking was amazing!!! Definitely something we won't forget!

We met a couple who had lived in Port Alsworth for 38 years (their house is the one you see nestled in those trees out there).

Then we headed to our cabin, Coyote 2. It was beautifully decorated in a rustic cabin decor. There was a big fluffy bed, private en suite, and modest furnishings complete with a hand-crafted rocking chair which was really comfortable.

The camp has many cabins and is nicely laid out with wooden walkways leading to all the other cabins. All the guest cabins are on the lake and have beautiful views of the water and the mountains which surround everything.

The camp if run by some paid staff and lots of volunteers! These volunteers are all Christian people who exude the love of Christ and are NOT religiously pushy at all!!! They just have love, concern, compassion, and caring pouring out of them! It was such a blessing to be in their presence!

Throughout the week we attended daily marriage strengthening classes, daily devotion, and various activities that we could sign up for.

Since Dean can't physically (due to TBI he gets too fatigued) do things that have too much time away from a bed, too much moving, too much noise, too many people/busy-ness, we signed up for one activity together. One day we went out on the Jay Hammond (a fishing boat) and went fishing for pike. Dean caught two of them, one of which got him the title local "famous" pike catcher since it was the biggest they'd seen. It was funny that for days random people would stop me and say "Hey, your husband is the one that caught that huge pike". I jokingly told Dean not to be surprised if some local media came to do a story on him....hahaha. Dean took it easy every other day.

His other outing was a day out on the Track Chair when we "walked" out to the visitor center and he could see/touch some animal pelts, we got to see giant bear paws, and we bought some stuff to bring home to the kids. One of the days I ventured out without him since the activity would only take me away from the camp for 3 hours (Dean would likely sleep for the entire 3 hours so he'd be fine). I went to see Dick Proenneke's cabin which was just so very cool. This guy is worth learning about!

There was other types of fishing activites, a hike, and a bear viewing day that couples could choose to take part in as well.

Before we went, I'd heard of Billy Graham, but didn't think much of him. I know he's an important guy to Christians but as a Catholic I was more accustomed to listening to guys who spoke about Catholicism. I never knew anything about Franklin Graham and even if I had I wouldn't have thought much about him either? I got to meet, talk with, have dinner with, and sit around the campfire with Franklin many times this week. I'm not talking like a group of people listening to him talk or anything like that. I'm talking about Dean and I hanging out together and Franklin walking up and asking us about our day and ending up sitting down to have a more deep conversation about life in general. This man is the most normal guy who really has love and caring pouring out of him as well. He's a real man's man type of guy, not at all what I would have thought! At the beginning of the week the staff had told us that a copy of Franklin's book was in our cabin and ours to keep. I thought, "who is Franklin and why would I want to read about him"? By the end of the week I wanted to know more about him and on the plane home I started reading his book. The book is his autobiography Rebel With Cause and as I read the beginning of how he described parts of who he was as a child I had an even greater appreciation for him as the child he was could easily be seen in the man I met! He is a genuine man! What a treat to meet him, his wife Jane, and his daughter Cissie and her husband Corey. They are not a "show" family where they strut around showing themselves to the public for attention or because they realize they are in the spotlight, they came there because Operation Heal Our Patriots is a CAUSE they all believe in!!! They really are thankful to the men and women who fight to keep America free and they really want to give back to the warriors and their families who sacrifice for them. It isn't a media stunt for them! That was so touching to learn over the course of this week. I began to look back and the townsfolk greeting us as we got off the plane and the staff and volunteers and realized that they are there because Franklin led them by example!

One night we all went to Doc Furman's cabin. He's the surgeon who with Franklin started World Medical Mission where they sign doctors and surgeons up to volunteer their skills in very poor countries. His cabin was amazing! He has a God's view of a beautiful lake. It was quite an honor to go to his home for dessert and then we all shared stories of love in our marriage. One wounded warrior, Will, told a story of of when he was in the hospital after being wounded and losing his leg. He told the doctors and nurses he wanted to learn to kneel first rather than walk so that he could get down on one knee to propose to his then girlfriend, Kat. It was such a touching story it brought tears to my eyes. The most touching part was that I had been getting to see them interact all week long and they are just an amazing couple! His story was really icing on the cake :)  The other story that seemed to stick with everyone was the one Dean told. He said that I was his perfect partner and that if there was such a thing as a wife store he couldn't design a more perfect woman than me! That just got everyone teary eyed and then all the guys started joking about if the wife store took returns or gave military discounts...hahaha. It was so touching to get to hear about all the marriage stories through deployments and wounds and hospital stays how everyone grew through the many hardships they faced.

The last day we had a church service which was strange for me as it wasn't a Catholic Mass. It wasn't that bad..we sang some songs and Chaplain Fisher did a great job leading the service. After that there would be some baptisms and I was so surprised to see that 4 couples' lives had changed that week to such a degree that they wanted Jesus in their hearts and in their marriages. Eight people got baptized that day in the frigid water. That day definitely brought tears to my eyes! I loved hearing people's testimonies about how they were touched by God that week!

Later that last day, we were all gathered around the campfire and shared stories of thanks for the beautiful week. The staff shared their thoughts and the couples shared theirs. Lots of tears were shared there as well. We learned that the three-person cleaning staff who went each day and changed out our towels, made our beds, and tidied up our rooms had also stood together and prayed for us while in our rooms! That was the most touching thing I think I had heard all week! They took the time and energy to actually care about the couple that was in each room. I assumed as anyone would, that when they came into clean they were sticking to a schedule and getting their work done, but cleaning our rooms wasn't just "work" to them. It was their way of imparting love on us, it was their way of letting Jesus work through them, it was their way of blessing us. Each couple was then given a study Bible signed by Franklin Graham and with personal messages signed by the staff and volunteers to each of us.

Then came the very sad good-byes. The staff shared with us all that this really wasn't "good-bye" but a "see you later" since we'd all be coming to an all expense paid reunion in North Carolina in February! I can't wait to see everyone again as well as every other week's couples!

At the beginning of the week the staff told us that we'd be becoming part of their family this week and when they said those words I thought that was a "thing to say" like people who often ask "how are you" when they really don't want to know. By the end of the week we REALLY WERE part of their family! They showed it, they lived it, they proved it all week!

Saturday, July 6, 2013

A New Track Chair

A couple weeks ago we found out that Independence Fund awarded Dean with a Track Chair! Dean was not very happy that I applied for one and he wasn't very happy when we found out that they chose him to receive one. He doesn't want to need one, he wants to believe that he can somehow will himself to do what he pictures himself doing while he stays home 99% of the time because he can't get out and enjoy what he wants. He lives in a kind of denial about it and little Dean and I end up living a very boring existence because of it.

This all changed when we went to Alaska (I'll write about THAT awesome experience in my next post). They had a Track Chair up there that they had just gotten the previous week. Dean was the first wounded warrior to try it out. He LOVED it! He immediately realized that this chair would give him the independence and the freedom to do what he loves to do, be out in nature and relax without having to fear getting too tired, without having to plan out his energy reserves, and without having to put more responsibility on me.

When he was riding on it I realized that we haven't had a normal paced walk where I wasn't having to worry about his stability, energy level, or pain level in 3 years and how having this chair will allow us to do things we used to do! When I applied for one I had hoped that if he were awarded one he'd be able to see the benefits I could foresee and now he has. I am super excited!

Dean will get his custom made chair in September or October and we can't wait!

Sunday, May 12, 2013

Pre-War Snapshot vs. Post-War Snapshot

I've been in an online reading group where a handful of wounded warrior wives all read the book Wounded Warrior, Wounded Home by Marshele Carter Waddell and Kelly K. Orr, PhD, ABPP and then met by video chat each week to discuss that week's reading and the impact on us and our family.

In Chapter 6, Marshele poses one particular reflection question that I felt would be beneficial for me to post here with my answers. She asks: "In your mind's eye, place a snapshot of your pre-war family/marriage beside a snapshot of your post-war family/marriage. Compare the two images for a moment. Now describe the differences you see in the two snapshots (facial expressions, body language, background or setting, lighting, sounds, colors, activity). Give as much detail as you can.

I thought about this and immediately saw our family in the kitchen at the old house in Willamina. Dean smiling, the boys recounting some funny story (having their typical dueling conversation), me smiling as I await the punchline to this story that I already heard. I would reach out and just touch Dean without any thought as an expression of my closeness to him. I would interject some mom-ism like "ok, ok, don't go off on a tangent, tell him what happened next" and Jeremiah would likely jump in on top of my last words and say "oh ya, oh ya.....". We could all just talk, stacking our thoughts on the trail of another's thoughts. The noise was like a typical high-energy family.

Another snapshot is of our family outside in the summer having to do some yard maintaining. Dean LOVED being outside and working on his yard even though there was more there than one person could really handle in the few hours a week he could spend on it. I had such bad allergies that I would only come out for a short burst of time with a snack or just to see how everyone was doing. Dean would be working his behind off, sweating, and having some massive pile of debris as a testament to what he'd accomplished so far, the boys would be off in another corner with their little piles while they'd also have some kind of mess as a testament to the bickering that they'd been shoveling all afternoon. Dean would go from the stern step-dad yelling at those boys to pick up the sticks and rocks in the yard so he could mow it to the loving husband when he'd see my face while I brought out sandwiches. He'd smile and give me a "Hi you see all the work I've been doing, doesn't it look good"? We'd talk while the boys would throw things at each other in the background. Just good old chaos that was ok because we had a busy, high-energy family.

Now the snapshots look the same from day to day. There is no energy, everything is quiet, controlled, and as still as I can make it. Every person or action can only happen one at a time. Dean can't take energy faster than snail's pace. When I talk to Dean it has to be something important and no one else can make noise. If I can't keep little Dean quiet for the minute I'm talking, Dean will grab his head in pain and go upstairs. Most days we live with Dean upstairs and I am lonely. I get sick of having to do everything, be everything for everyone, hold up our slower spinning plates while I hop on one foot. In our old snapshots, in the background of our lives, both Dean and I were holding up our plates (football practice, school activities, family outings, Church on Sundays, the running of the home, the plans for the immediate future, planning long-term goals, etc). I loved being his partner. Now I hold them all and it's difficult and lonely. Thankfully we only have one munchkin at home now, but even with that I try to not schedule too much in our lives. I can't be away from home much and have to be able to cancel things on a moment's notice if Dean's having a bad day and shouldn't be left alone. I can only really make tentative plans for everything. There is very little touching in our current snapshot and very little smiling or laughing. The house is kept dark which goes just perfectly with our life right now :(

Wednesday, April 24, 2013

Lost closeness

I have been having a problem with Dean's and my relationship lately and I haven't written about it because I don't know if I can convey it well through writing or otherwise. I'm going to try.

I've touched on the loneliness that exists in a TBI/PTSD relationship but it so far reaching that it just pervades my whole life. I will start by saying Dean doesn't feel this loneliness that exists, it's only me who feels it. His experience is that we love each other, we are close, he loves me, I love him, things are great! He can sense my unhappiness and just attributes it to mistakes he must be making.

I've been thinking about what makes two people feel close in a relationship? What made me feel close to him before his injuries? I came up with a list:

  • He used to be aware of what I did day to day and would help me out anytime he saw something he could do. He talked often of loving to "make my day easier". This always made me feel like we were partners, we were on the same team, and he was paying attention!
  • He used to love to talk to me and learn about the little things I was thinking about. We would share the minutia of our lives and would always make each other giggle at how similarly we thought. I felt like I knew him and he knew me.
Even though there may be other things that help people feel close in a relationship, these two things were a constant all day, everyday occurrence that it was the base of our relationship. 

Now our days consist of him being in his own world, working on his own goals that he is trying so hard to keep in his memory. He doesn't share everything with me because as he says "any time I think of telling you something, another thought comes along and I forget what I wanted to tell you". It makes me picture how his mind must be like a crazy Autobon highway minus any order. I can't expect him to share his thoughts with me if it's so difficult and confusing and would just cause him pain.

Now keeping his own thoughts in his mind takes so much effort and focus that he can't also be aware of what I'm doing or how he could help me. I can't expect him to pay attention to me on top of trying so hard to do his own things all by himself. 

At the end of all's just a sad reality. The list of things Dean lost is long and it may seem like a trivial list to some, but when you live watching these losses in someone you love, it is very significant! Our closeness was also lost and that is just so hard to live with sometimes!

Thursday, March 28, 2013


I am feeling so lonely and lost right at this moment. Dean is feeling so bad today. He says he hasn't felt this bad since he first came home from Afghanistan. I don't know what's causing this? He has been going downhill for a couple days and I don't really know why. It's times like this that I just feel alone. It hurts me that he's upstairs hurting and exhausted and confused and sorry for having a bad day. I can try to just "go on" with a smile but my heart just aches. Who is supposed to tell me why he never gets any better and just seems to get worse?

Wednesday, March 20, 2013

Troubles with Swallowing

One of the problems my husband has is with eating/swallowing. He often chokes on his food as it "goes down the wrong tube". The food goes into his lungs rather than his stomach. Now, thankfully, as his medical testing showed he has a strong cough reflex and he can successfully cough the food back out of his lungs, but that does not take away from the helplessness I feel as it's happening.

I haven't been able to link it's occurrence with anything in particular, but I want to say it's only gotten worse as time goes on. I remember when I first noticed it. He would cough once or twice while we were eating and then be fine. That progressed into not simply a cough but you could hear that he sucked his food down his lungs and was trying to cough it back out. At first, I thought "Crap, that's scary, are you ok?" and it stuck out in my mind. Well then it happened again the next evening. I started to notice it happening more often and so I posted something about it in one of my facebook groups. One of my friends, a nurse, told me about how dangerous "aspiration" can be.

I had to research that. So I googled something like "aspiration and TBI". That is my usual way to research anything concerning Dean, to put the concern next to the words "and TBI" to see if there is a noted link between the two issues. I have found many things that the doctors never told me had anything to do with TBI all by googling it. The doctors treat every symptom as an isolated island problem all on it's own. Oh he has trouble swallowing, just look down while you swallow and that should do it. No mention to me how that is something seen in TBI patients.

Since google linked the two issues together, I called the VA and told them about his little problem and that I was worried that he could get what I found online, something called Aspiration Pneumonia. They set up a swallow study for him so they could see how his body was working. Since I know that to help any claim you have with the VA you have to show medical proof of the problem, I knew that him being seen (even if there was nothing they could do to cure him or prevent him from choking or getting pneumonia) would be helpful to have in the medical records. So we went ahead with the test. It was pretty painless. They had him eat various foods while standing in front of an xray machine that could take a film of him actively eating. It was useful that with one of his swallows he actually choked so she could assess the strength of his reactionary cough and whether or not he could expel the food from his lungs on his own. He could.

As I said above, I have only noticed this coughing on food getting worse. It happens with more frequency and lasts a lot longer these days. Today was a good example of what these most recent episodes have been looking like. You can kind of hear when it happens. For a brief second you can hear that swallow that went wrong and it turns immediately into violent coughing. The body knows that food doesn't belong in the lungs! The coughing lasts from 3 to 5 minutes and by the end becomes a more wheezy sounding cough. Then the coughing calms down a bit but only as long as he breaths slowly and carefully and doesn't try to talk. With talking, all bets are off, and he's right back into the coughing. Tonight he had to not talk for about 30 minutes in order to talk with no coughing.

I feel just helpless the whole time. I know that little Dean and I need to just not look at him and be quiet and still. He is feeling humiliated and out of control and a little vulnerable at these moments and those feelings can easily explode into an angry outburst if we don't follow this unspoken protocol.

Dyphagia (Swallowing problems with TBI)

Tuesday, March 19, 2013

Ohhhhh Ebay

Dean saw that he had purchased a tool off ebay that he doesn't have. He wondered what happened since he didn't remember purchasing it. He messaged the seller and asked if he had made a mistake and purchased this tool without paying for it and said he was sorry but he didn't remember getting this tool. The seller responded with a "Your money was refunded". I messaged the seller back (from the same acct, so the seller thinks he is talking to one person) asking if he could give me information on why my money was refunded. The seller responded, in all capital letters, with "I THINK YOU SAID IT WASN'T SNAP-ON WHICH IT WAS".

Now we have a pile of quandaries???  Now I have to look to see when he "bought" this item, how much he paid, was his money really refunded?

Sometimes I feel like I'm chasing my

Sunday, March 17, 2013

How I stay prepared and organized

I truly thank God that when Dean first got home I got lots of great advice from ladies on facebook that I didn't know at the time but who had already been through what I was to go through (and am still going through). I am good friends with these ladies today and am so thankful they are in my life!!! (Sara Shaw and Julie Wright)

They told me lots of things but something that stood out above all the barrage of information that sounded like Japanese to me at the time was one simple piece of advice......SAVE EVERY PIECE OF PAPER! They told me that I needed to be organized and thankfully this is a trait I have always been pretty good at. So I created my way of being organized.

I did save every piece of paper, read through every one of them, scanned each of them into the computer, then created a file for them. Over time I have revamped the files and created file systems on my computer as well. It has made things much easier!! Whenever I'm talking to Dean's VSO (Veteran Service Officer), I can send him a record. When I'm talking to a PEBLO (Physical Evaluation Board Liaison Officer), I can send a record. When I'm talking to people who are more knowledgeable than I about how to fight a particular battle, I can send proof of whatever I'm talking about. This ability has been crucial to saving time and getting the answers I need!

I am going to show you the way I do it...and hopefully you can tweak things to come up with your own way :)

First, we have a tiny little townhouse and so I bought a desk ($35 off craigslist) that can have the doors to it closed so no one has to look at my "office". It also allows my office to be in the center of the downstairs living space where I spend most of my time between the kitchen and living space since I have a family to take care of.

When I'm working, which is most days (I honestly only close it when I have people over, which is rare!) it's open with all its clutterful glory

You see my scanner, printer, copier is up on top, my desk top has the computer and all the spiral notebooks I keep each with it's own purpose. I have the pull out surface which contains all the things I am currently working on and those things stay there until I'm at a point of satisfaction with them that I retire them to "wait" in the file folder (because as we all know, there is A LOT of waiting). On that pull out surface, I will usually have at least 3 things I am currently working on so that area is my least organized. Underneath the pull out surface is the file box (the other stuff is where we keep my son's many puzzles and my box of printer ink since I go through a lot of ink).

Here is my file box. I have a file for the Army where there are subheadings for the MEB/PEB (Medical & Physical Evaluation Board) process, his awards and medals, his LOD's (Line of Duty Investigation), anything that comes from the Army. A file for Legal/Court where I put the paperwork pertaining to the child support mess we've had to contend concerning the over payment of child support since there is a glitch in the system once you get approved for Social Security Disability. I have a file for Current things we are waiting to hear on with subheadings for Purple Heart since I'm trying to get Dean his Purple Heart, and a TSGLI (Traumatic Servicemembers' Group Life Insurance) folder since I am applying for that. I have a Social Security file to keep those documents. I have a VA Claims file where there are subheadings for VA Paperwork which contain Dean's papers from the VA whether they are the papers requesting more info from us or his rating decisions since they usually come little bits at a time, VA Caregiver folder for all those papers, and a Homes folder for Homes we've applied for. I have a file for Dean Medical with subheadings for Misc Medical paperwork from the VA, Lab Results for paperwork on his labs, and Project Victory where I keep his records from there.

At our VA, when you request records, they allow you the option to get records on disc which I ALWAYS CHOOSE! That is a life saver!!!!  I don't have to scan in any of his medical records. What medical records I do have in hard copy form are mostly duplicates of what I have on the computer and misc notes and letters I've been given (which I scan into the computer).

Above is how I organize my computer files. I back these up regularly since our lives are contained inside them!!! In these files, not only do I keep specific information on Dean, but I keep bundles of what I've done together. For example, to apply for a Purple Heart you need a whole check list of information, so inside the Purple Heart folder on the computer I have a copy of everything I sent in his packet. Same goes for retreats, whatever information was required to apply for the retreat and every communication important to the retreat is kept in that file (which is under Caregiver). Under TSGLI I have all the information that I've sent them so that I know what they've seen.

I use an external hard drive that a little bigger than my cell phone. It's can hold 1 TB which should cover enough info for now :)  I bought mine off for $80.   Seagate External Hard Drive from

So now that I've laid out all that I've set up to be organized, I need your feedback. Do you have any questions about something that would apply to your situation? Have I left a piece out that requires further explanation? Let me know :)

Sunday, March 10, 2013

Why is he still in the National Guard?

In my post Fighting the VA ~ our "other" job ~ Part 1, I mention having to fight the Army as well as the VA. I get asked a lot "Why is Dean still in the National Guard if he's so injured"? The simple answer is that the Army (or any military branch) has nothing to do with the VA. The more specific and complex answer is our crazy

There is the way it's supposed to work and the way it worked in our case and I will give you a brief summary of both as I understand them.

When you are in the National Guard and you are hurt while deployed, you are supposed to be medevac'd out of country and eventually put into a WTU (Warrior Transition Battalion) and then hopefully a CBWTU (Community Based Warrior Transition Battalion) so you can be with your family. While you are in the CBWTU you receive your Active Duty pay, are treated by military doctors, and are still on "orders" which means the military tells you where to be and what to do. Eventually they decide whether your injuries make you unfit for duty in any MOS (Army job) and if they think you are unfit for duty they start you in a MedBoard process where they determine that.

We had a different story because of mistreatment from Fort Lewis (which I believe now was a Godsend). When Dean was medevac'd to Fort Lewis they told him he wasn't "Big Army" and he could go back to Oregon and have them take care of him. They belittled him for taking up a bed that a real injured person should have (even though they had his positive TBI screen and they wouldn't even listen to him tell them his back hurt). They told him over and over that as soon as they could get his paperwork done, he was out of there.....and he was out of there in 60 days. Since he came home and I knew something was wrong, I took him to the VA where they began diagnosing him and treating his injuries. Since he came home, he wasn't in the WTU or the CBWTU and he also wasn't on "orders" and being told what to do by the military. He was a regular civilian soldier in the National Guard now which means we could file claims with the VA and begin the journey of getting a disability rating. So now what the National Guard do when they have a wounded soldier in their unit? They determine how injured he is and give him a temporary or permanent profile. This is a piece of paper that describes what a military doctor says he can and can't do. Dean has been on a permanent profile for a couple years now. I don't know what the normal process (if there is one) for being referred to a MedBoard is under these circumstances. Heck, I don't think his unit knows to be honest (and that's not bashing them or anything, I just don't think they've had this experience before). Dean has been referred for a MedBoard and it will be determined whether his injuries make him unfit for duty in any MOS. He still, however, has to go to drill each month to be considered a "soldier in good standing" and remain eligible for medical retirement. I hate it, but it's what he have to do, or so I've been told.

Hopefully that helps you understand how the military system works differently than the VA and shows you that they have nothing to do with each other.

Fighting the VA ~ Our "other" job ~ Part 2

Other than help my husband navigate the world each day, I have to find out how to take care of our family. I've been handed a husband who can't provide for us and many civilians think that the military or the VA just "takes care of everything" with a POOF! I'm sorry, but it's nobody's job to take care of us. It is not the military's job to care for wounded soldiers' families. There is no division of the military that is assigned to the caring about a soldier's future. The VA is the agency that takes that on, but even then, there are two sections of the VA and they don't communicate with each other. Aside from all the bureaucratic levels of mess that exist, there is also nobody to train anyone on how to navigate through it! Wives or family members of these wounded soldiers have to just figure it out.

The purpose of this post is to give a little overview of what I've figured out.

The VA has two parts: the VBA (Veterans Business Administration) who is in charge of ratings and compensation and the VHA (Veterans Health Administration) who is in charge of treating your illnesses and injuries. When a soldier is hurting and he's sent to the VA, he goes to the VHA, the doctors who will run tests and write things down and prescribe medicines and recommend him to other departments for treatments. They give opinions on how injured a soldier is and try to predict how these injuries will affect the soldier's livelihood and relationships, but none of this will pay the bills. It's the VBA that a soldier needs to contact in order to have his medical records looked at for them to determine the meaning of those predictions. They will decide how disabled from working that soldier is. A soldier cannot just call up the VBA and talk to someone  and bango it's good to go. The soldier has to find a VSO (Veterans Service Officer) to contact the VBA through the process of filing a claim. For each injury a soldier has a claim must be filed. A VSO's job is to know what injuries are claimable based on the book of codes the VBA uses to determine disability. In my husband's case, his injuries are so bad that he could never understand what I've just explained! This is all my job.

Not all VSO's are good ones and all VSO's are very busy with large caseloads. It will behoove you to know what your VSO knows so you can help things along. If you don't, then your family's well-being and your future is left up to a guy who is really busy and might not know very much. You could end up waiting a year or more only to have claims denied because your VSO didn't know what he was doing. I am not that kind of wife, I will not leave my families well-being and our future up to a guy in some office!

There is a book of codes that can be found on the internet called e-CFR (electronic code of federal regulations). Title 38: Pensions, Bonuses, and Veterans' Relief has a Part 4 - Schedule for Rating Disabilities that itemizes the rules the VA uses to determine ratings. In these rules you will see how they define the severity of an injury and how that equates to a percentage.

38 eCFR Part 4

I familiarize myself with these codes so that I can make sure the VHA (i.e. doctors) writes the correct wording for the VBA to recognize easily. The doctors don't know what this book of codes says and so it makes it difficult when the soldier awaiting a decision from the VBA has to hope the VBA sorts through hundreds of pages of medical records and comes to an accurate conclusion and a fair rating. Regarding Dean's TBI, if I didn't know the scale they used to rate it, I wouldn't know what they are looking for and I wouldn't make sure they got brought up. If we don't bring them up then they won't get written down and without them in the medical records, the VBA can't find evidence of it.

Another reason reading these codes is helpful is so that we don't waste time wanting higher ratings for things that don't rate higher or claiming injuries that they don't rate. An example of this is Dean's broken vertebrae. This injury is not a claimable injury. There is no rating for it because it is healed and does not stop Dean from working. So even though it was a service connected injury, that is not how the VA works. Other examples: Tinnitus - no matter how bad it is, they don't rate it higher than 10%; Migraines - no matter how bad they are or if they occur everyday, they don't rate it higher than 50%. These are helpful things to know so you don't waste your energy and time being exasperated over things being the way they are.

There is another link in this process. Once you get a VSO to file the claims for the injuries that have been tested, documented, and treated by the VHA, you will be scheduled for a C&P exam (Compensation & Pension). A C&P exam is when the soldier has to go to an exam by what I like to call the "insurance adjuster" type of doctor. It is this doctor's job to judge how true your claim for injury is and how severe it actually is. It is their job to see if a soldier is faking an injury or embellishing his claim. It's this doctor's job to try and save the VA from having to pay so much. These doctors are often not friendly and they will tell you that they are not there to help you get treatment or give you medicine.

Once a soldier has the C&P exam those documents are put in a big file along with medical records and evidence that must be provided by the soldier (i.e. sworn statements, letters from wives and family members, military documents, etc). Then the VBA can make a determination of rating based on their CFR. A rating equates to a dollar amount and that's how a soldier is compensated for his disability. Of course there are many soldiers that get an unfair rating decision and they have to appeal, but without reading the CFR they won't know what is fair and what's not fair.

I hope this has cleared some things up about what soldiers and sometimes their caregivers have to go through to get VA compensation. Please ask away if you have any questions :)

Fighting the VA ~ Our "other" job ~ Part 1

Caregivers know what we have to do aside from taking care of our husbands, children and homes. But it occurred to me that civilians don't have any understanding of the "fight" we have to endure with the VA or the Army or Social Security or the courts. We have to become knowledgeable in medical codes and laws and rules in order to get our husband's what they deserve!

Our husbands joined the military for their various reasons and were trained to be killers for the United States military. The US military needs killers to keep everyone else safe! Then the President calls up our soldiers and asks them to carry out unthinkable and unspeakable acts which endanger, injure, and forever change our soldiers. In some circumstances a soldier returns home with injuries and in even fewer circumstances these injuries are so severe that they can't work.

If you have read anything else in my blog you know that Dean can't work. His injuries (TBI and PTSD) make it so he can't hold any stable employment. He is actually unable to keep himself safe and alive.

  • He doesn't eat unless I tell him and without eating he would likely lose consciousness (since he gets very dizzy and weak when he hasn't eaten) and eventually he would get lethargic and eventually I imagine he'd die. 
  • He doesn't take his meds unless I give them to him and without his meds he'd likely be permanently hospitalized as he'd have such severe headaches that he'd probably kill himself to stop the pain and he'd have such nightmares that he'd likely kill himself to stop the craziness and without the anti-depressants he'd likely kill himself because his depression would tell him he doesn't deserve to live. 
  • He doesn't shower unless I tell him. Now I don't think not showering would kill him, but it would cause sores and smells that would likely make people stay away from him. Sores could become infected and he could die from an infection since he wouldn't recognize the seriousness of it.
  • He can't be in public on most days without anyone there to help him understand others words and actions and without help to respond in a way that wouldn't be threatening. Most days it's like his brain's wires are crossed. He will sit by the window with his eyes and his head hurting while his sunglasses are hanging on his shirt and he won't think to put them on. He'll be laying in bed resting and be shivering cold and won't think to put the blankets on himself. With this kind of disconnect at home, in public it's really confusing for him. When people look at him and he doesn't know what that look means or if someone bumps him and he can't figure out that that was an accident or if someone talks to him but he didn't hear them and they get all defensive...he can't understand these social interactions. In public and around people he tries so hard to be polite and acceptable that when things happen that he feels his ability to control himself slipping away, he has to get out of there. When you add in the fact that in his mind everyone in that store or on the street is a potential terrorist/enemy and he has to spend his brain power trying to assess the danger he gets really exhausted. When he has to talk to someone, say at the post office, he slowly asks a question hoping his words make sense to them and then quickly blurt out their words to answer him, he didn't know what they just said so he asks them to please talk slower. Then they look at him like he's some kind of dummy and they talk down to him. Then he gets angry because they are being disrespectful and he has to get out of there without his question being answered. Now the thought of having to go out and talk to people causes the same anxiety. If he were left to do these kinds of things alone he'd either kill someone once he reached his breaking point, kill himself due to the overwhelming despair he feels, or he'd never leave the house. 
These are just a few examples of how Dean wouldn't be safe if he were left to care for himself. The are also examples that illustrate how he is unable to work. He may, on a good day and with me helping him achieve that good day, be able to "work" for 6 hours or so but he couldn't do that day after day nor could he do this without me helping him have good days, and a person can't live working 24 hours a month.

When a soldier's injuries are interfering with his livelihood he is usually advised to seek help at the VA. When a soldier's injuries are so bad (like Dean's) that he can't get himself to the VA and he certainly can't understand what to do with whatever they tell him, we have to hope that that soldier has someone in their life to help them! That's where I come in. 

Saturday, March 9, 2013

Secondary TBI

TBI wives will know what the title of this post means. It's a term we use with each other as our best way to describe what has happened to our poor brains and it's met with a laugh and a nod as other TBI wives know what we're talking about.

Secondary TBI is felt when we get to that point where information, ideas, and 'things to do' start falling out of our brains. It's when we have filled our brains with SO MUCH that anything else leaks out. We don't control what leaks out, when it leaks out, or how much leaks out and we only discover it's missing when we are reminded of what we forgot. At first it happens slowly and we may think "Man, I better get more organized" and we write things down and program our phones. Soon we forget where that sticky note is and forget to enter something into our phone and after that happens over and over we panic "What am I going to do??? How can I stop this?". Following our failed attempts to stop this inevitable process, when we've gotten so used to having to make excuses to everyone we've let down, we come to accept this as our own "new normal". We've progressed to the realization of "Oh crap, whatever! There is nothing I can do about it" and that's when we know we have somehow caught our husband's injury.

I say that all with sarcasm that I hope you can hear because of course, we cannot catch our husband's injury. I'm sure our problem is probably caused by some manifestation of burn-out or just the pure math that one can't possibly be the brains of two people successfully for any length of time. Oh well, such is this life :)

Friday, March 8, 2013

Dangerous driving, not going to happen again

Today was the 2nd day in a row of drill for Dean (the split training drill where he goes and sits in an office building). He was thankfully only there for half a day but because it was the second day he was SO wiped out that the brain wasn't hardly functioning. In the morning, I always try to assess whether he is awake and aware enough to drive before I let him out the door, but now I have a new danger to deal with regarding driving.

Dean passed a driver's test from the VA. I believe he passes because he drove a truck for 25 years and it's part of his long-term memory and that part of your memory that remembers how to ride a bike. I believe he can safely operate a car and he knows the laws/rules of the road, but there is more to think about and today I had that brought to my attention.

He's been choking a lot more often on his food lately so I reminded him this morning (silly me to think he'd remember) not to eat and drive at the same time!!!  He forgot that warning and went through a drive-thru after drill. He said he spilled most of his burger all over himself (which was his biggest concern) but he continued to say "I've been having tunnel vision and problems with my peripheral vision today, every time I tried to look at something other than right in front of me I swerved all over the place". Holy crap!!! I'm feeling really stupid for letting him drive today! I have to remember that he has bad judgement where he thinks he can do things he can't do or he doesn't think something will be a problem that IS a problem. 

What am I going to do? I mean, he does only drive to drill once a month at the most...some months I drive him. Driving to drill is the drive I worry about because it is 47 miles one way (a little over an hour) and that is a LONG time for him to sustain focus on anything. That is the only time during a month that his car gets driven if at all. The rest of his "little drives" are 5 blocks away to the Hardware Store to 6 blocks away to NAPA Auto Parts about once a week or the very periodic 2 mile drive to Safeway maybe 2 or 3 times a month. 

I think I'm just going to have to make it my focus to drive him to drill and just always offer to do it. I think he actually likes when I drive him but he doesn't want to "put me out" because it makes for a very long day for me (I spend 4 1/2 hours in the car between 6 am and 5 pm). This will just have to be one more thing that I "suck it up" and pretend with my best fake smile to really want to drive him! 

I can't wait for him to be out of the Guard!

Thursday, March 7, 2013

The morning of drill

Dean had to go to drill this morning as part of his split training (that is where his unit will be doing things this weekend that he can't do yet he still needs to put in his he comes on non-drill days to do other small things they need, like put stickers on folders or separate papers). It still takes a huge toll on him!!!

Last night, go to bed early. This morning: I help him get his uniform on and tie up those boots. I fix him coffee and a nice, warm breakfast (rather than him having his usual cereal), an omelet and the house smells wonderful. He's signing onto ebay to check the status of an auction, then he remembers "Oh ya, I need to eat" so he comes into the kitchen (where I am still cooking) and he gets a bowl and his cereal. I say "I'm cooking you breakfast", he says "Oh! You are??? Great!" and of course I'm thinking 'what do you think I'm doing in here and why the house smells so yummy?' but I just say "Yep". He gives me a hug and says "You're such a good wife"  :)

Then he's eating and trying to find something in his general seated vicinity and that's all it took. He starts choking....and this one was a bad one. I can hear the large chunks of food getting coughed back out of his lungs. Now he gets mad because he can't do what he is trying to do while he eats. As he keeps trying to make himself stop he doesn't stop and he continues to mini-choke on every bite. Now he's super pissed and slams the table and he's all flustered!

He finishes his breakfast and starts to gather things and because he can't think straight anymore he puts things in his own way and trips and almost falls down (walls are great). He asks me to please make him stop because he can't seem to stop with a desperation like he's going to be in trouble. He still has 15 minutes until he has to leave and he doesn't really have anything left to do but while he is wearing that uniform he feels owned and it shows!

I give him the rundown: Do you have your phone? Do you have your GPS? Do you have new batteries in your hearing aids? Then I tell him that I put the pile of things he had gathered to take to drill (he gets bored there and needs reading material, snacks, cigars, etc), which were piled on his passenger seat, into a duffle bag so he could easily carry everything into the building. I walk him out to the car and give him the final prep talk...."If you get flustered, be late and pull over and call me, it's better that you are late than be lost, confused, or dead. They aren't expecting  you at a certain time and a hundred guys will wonder where you's just you"

Now I wait. In an hour he should send me a text saying he got there safely.

Wednesday, February 27, 2013

Caregiver Retreat

It's been a while since I've written....things have just been all over the place. Some   days we are "in a groove" and it just feels like groundhogs day over and over and what is there to write about on those days?  Then other days it's me crying for silly things or me mad over dumb things....Dean yelling at dumb things or Dean apologizing for our life which breaks my heart!

We had been on a house hunt and found out that we need to put it on hold for a little longer. We are both trying to have faith that God will take care of us and lead us to the home that is meant for us. Dean has trouble with keeping this faith and trusting God. He thinks he's done something wrong to deserve this and that God is punishing him. I have to help keep his spirits up daily.

The other big thing in my life right now is an upcoming Caregiver Retreat in South Carolina put on by Independence Fund (Gary Sinise's organization). I am so beyond excited to go because it sounds like they really made this retreat about pampering us wives!!! At the same time I'm terrified to have something nice! I can't explain that one???  I guess I suffer from a similar "I don't deserve anything good" syndrome that Dean does? Those emotions coupled with such anxiety just preparing for this! I really wish my family was on board. I wish they took a more active part in having compassion for Dean's injuries. Instead I have a paid respite provider coming out to put in 20 hours of work in 3 days time not including nighttime, my step-daughter being paid to come out to pick up the other 2 1/2 days, and my MOMS group saving babysitter Nicole who will be taking care of Little Dean by taking him to school and feeding him dinner and letting him play at her house so he doesn't exhaust daddy while I'm gone.

All this planning makes a caregiver realize how much she needs a break!!! For a caregiver to go through THIS MUCH just to have a break, it HAS TO be necessary!

I am worried about nighttime. I am the kind of person that has to be prepared for the worst. Let's say daddy puts little Dean to bed and then he snacks on some popcorn which he does every night...but then he chokes. What if he chokes so badly that he needs an ambulance but little Dean is sleeping....then I have to think that the next morning Caroline will be here and will knock at the door and when nobody answers she'll call 911. It's a horrible thought, I admit, but I have to make sure that little Dean is safe! This horrible scenario can really only happen on Thursday night, Sunday night, or Monday there are a couple nights where someone will be here. I have to just realize that I have a cell phone and it's not like I'm going to be out of contact for 5 days. I'm a little upset that upon hearing that I was going on a retreat for 5 days my dad's response was that it's "not a good idea". Rather than asking how he could help, it's just not a good idea??? I think that really feeds my "I don't deserve this" thinking and feeds my doom thinking. Like it something horrible happened it would forever be my fault because I shouldn't have gone. Such a war going on inside me :(

On the flip side, I always tend to worry this much before I do anything happy for myself and then after I'm done it was NOT NEARLY as bad as I thought it would be. So I always get confirmation that it was a good thing for me to have the happy thing.

(I'm listening to a zebra rap about an hexagon....hahaha.)

Well, I'm cried out and need to get things done. I leave in TWO DAYS!!!!

Saturday, January 5, 2013

Added another "Topic"

I added a new topic that I will be writing about. I've been thinking a lot about my health lately and am trying some new things and a new way of thinking. I feel compelled to write about it and share :) The link to my other topic is on the right side of the page.

Tuesday, January 1, 2013

Exchanging Pain for PTSD....GRRRR

I've learned a great to describe Dean's injuries is like a tripod: 1)TBI; 2)Pain; 3)PTSD

Whenever someone has pain, no matter what else they have going on, getting rid of the pain takes top priority! So for the last two years our main priority has been to address his pain level which gets up to a 9 on the pain scale and with hydrocodone can be taken down to a 4. He doesn't like being on 5 hydrocodones a day so we've tried to address it in other ways as well. For the past couple months we've actually been able to get his pain consistently at a lower level and he's only taking 3 hydrocodones per day. Great!

It seems, however, that when as his pain has been greatly reduced he's becoming more of an ass! We put the fire out, so to speak, and now we see the water For two years I've thought that his PTSD wasn't a HUGE deal...yes, it makes his TBI worse, but his PTSD only reared it's head with things like noises and people behind him. Not anymore!

  • The other day he was looking at his mail and one of his packages had some damage (not the item inside, just the package) and he flipped out and starts yelling at me.
  • He was walking from the living room to the dining room and little Dean crossed his path, he flipped out and screamed at little Dean and made him scared and cry.
  • I asked him if he'd come and drink some water since he hadn't had much to drink that day and lack of drinking fluids makes him sick, he said "I'm not drinking any fucking water!"

He has been making the house a place where we are all walking around on eggshells and jumping down our throats for little things (which is unlike him). I don't really want to touch him, or kiss him, or sit by him, or talk to him. I'm becoming resentful and I hate it! Then he wonders why I'm being a "bitch" (that's how my distance is interpretted) and we can't really talk about it because of what I explained in my last post :(