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.