Picking Your Battles

So yeah, it's been a rough few weeks apparently, from my last blog posted. Things have though, thankfully,  calmed down a bit although my husband thinks he needs to "think about some things and get his head figured out". I am not really sure what that means but, I get it. We have been civil to each other but, no more meetings on the battlefield. There have been some nice efforts made on his part but, he sees no wrong in anything he said or did. That part bothers me the most. He dodges anything that relates to "us" so our kids are really the only thing we have that keeps us on mutual ground. I still feel like I am being blamed for something, being pushed away for God knows what and still have no clue what's going on with him. I think out of all of it? The blame hurts the worse especially when there is no reason I can find. He thinks he is beyond saving and I see much more left to save.

How's that for controversy? Try finding "compromise" in that statement. 

I wonder from time to time, if love can't save our Veterans then, what really does? Is there more out there we can do? Then from time to time, I put all my frustrations and heartaches into fighting for him and others. I really don't see myself as an advocate. I try to write to help others but, advocacy is such a strong word and often, I shy away from it. Hell, I am a volunteer with Family of a Vet, a friend that I've had for five years now and I can't seem to do enough! I try to help where I can but, at least she knows if she needs me, I've got her back or at the very least, bail money. I'm so proud of her and all her work she does along with all of our bloggers. I spend most of my pain, fighting back against what is wrong, putting all my strength into pushing for what was earned, and then battling the system as if I have nothing to lose. Right now, I wonder if I possibly just fought too much, and did it lead me into this situation and my husband? Maybe he figured I just left him behind. although supportive, he uses it against me when he is angry. It's why sometimes, I stay unsure of myself. I don't think he realizes that he was the reason I fought so hard. Leave no man behind right? Isn't that what we are all taught in the military? I really don't know what to think because well, I am somewhat lost on this whole part of it.

I am still continuing with my personal vendetta with myself and placing some challenges for me to complete.

I went ahead and did the radio interview with Dick Gordon, with The Story, in which my husband was supportive of. I enjoyed this experience immensely and thought for the first time in a long time albeit nervous, that maybe my self doubt is just coming from not knowing what direction I am going in. I am usually the lady with the plan, the poker faced Mistress with a few aces up her sleeves and a crap load of Jokers. I can pretty much keep that bluff for a long time, making even myself believe that I got it figured out. Honestly though, sometimes I have no idea. I also blame being a Virgo in all this mess and possibly still revisiting the whole menopause/demon possession as well. During the radio interview, I felt comfortable like maybe I was supposed to be there. All I can hope for is no back lash like I have had in the past for what I say; which is usually the non-sugar coated version of our lives. It was a good day. I drove home listening to my Ipod, belting out a few tunes, smiling at the fact I spun in the office chair in the studio and drank water from a cup that said "Life is Young". I decided that day, you know what? I am not going to just hide behind my computer. I need to get out more and just do more things. I almost decided to get rid of the purple and magenta highlights but, somehow it just suits me and it's still my hostage negotiation. I am afraid if I go back, I go back three steps personally. Still have the purple toenails, and polka dotted nails. Might change that up a bit. So keeping to the 101 challenge and adding on to my list. This time, for no one but myself.

It's been a long time coming but, maybe that's what scaring my husband?

I came home that one fine afternoon to a virtual storm of emails, MEB appeals denied and an upset husband. I have to tell you, I think battling the VA was much easier than navigating the Army's system of the Medical Evaluation Board. It makes no sense, the requirements you must jump over while doing a hand stand and the paperwork; it's no wonder why people give up, don't understand how to do it, and how they get screwed over so badly. I spent my whole day yesterday trying to figure out this mess and why they denied our appeal which is the residuals of the TBI, his back and knees and why they only want to put him out for PTSD. It seems the Army wants to only look at one day, in 2007 when our guys landed back home. One day, in which all their injuries were documented, promised to be taken care of, then just like that....disappeared. According to what I read in the denial in response to the appeal, which by the way, a third grader could have made more sense in writing it, it seemed to me they disregarded the last five years of medical records. It's all there. We rolled the dice, took the gamble and went with an Independent Medical Review to look over everything and base their opinion.

There you go, sometimes you just have to take chances even when the odds are against you. 

Now why is it a gamble? Because it can go against you or for you is how it was explained to us by JAG. You could have one doctor having a really bad day, the kind where they think "screw it. I'll just flip through this and say whatever". You are basically asking a doctor, who is on the outside and has no knowledge before hand or nothing to do with your case, to look everything over and say yay or nay. Well, we rolled that dice and it turned out that the doctor not only verified, backed it all up with her opinions in our favor but, also added two more diagnosis's. I figured, this cats in the bad. Wrong.

The Army wants to go back to six years ago, on the day of landing and because his records have nothing there they just want to deny everything based on one day. Tell me that makes any sense at all.  It took everything I had to keep the rage I felt under control because the records they are looking at are the only ones they have, because WE gave it to them. I swear, if I had a nickel for every time someone said "how strange is it that they have lost everything not just once, but several times?", "well, your husband's case is a backwards one" and "holy hell what a mess!", I would take that money and find me a really good ambulance chaser who would sue the Army for negligence, lying, covering it up, abuse, complete disregard for soldier's personnel records and then there is the safety concerns we have. If they lost all these records for these soldiers, who has them and who has access to the information?

Then everyone wants to know why we trust no one and demand copies of everything. 

We are now on our 3rd PEBLO which isn't really helping matters since the last one left this one a pile of mass confusion in an already overloaded caseload. If I ever locate our last one, I got a few things to say to him. We tried to express our concerns, our questions and even did a conference call with her, our military caseworker and Federal Reserve officer and somehow in all that....apparently she fell asleep. This week though, I had to suck up the pride all while listening to her lies, excuses and appeal to her woman to woman just fighting for their husbands. I am not sure that worked or not. We shall see. I really don't know exactly what a PEBLO does, or maybe the job descriptions that are listed and from what everyone tells me they are; doesn't seem to be any guidelines the ones we have had are following, After clearing up some questions she had, it finally hit her like Ah hah! I incurred a few bangs against the wall while on the phone, a nosebleed while further banging my head against the keyboard, a much needed Xanex and the consideration of just becoming an alcoholic (just a joke so please don't send me emails in regards to my alcoholism).....perhaps we might be one further step ahead with this one. The debate is still out though and I am not holding my breath.

It's been a nightmare. One I want to finally just wake up from and be done.

From my earlier posts and with the power of the internet, my open invitation to General Talley got a response. He was pretty upset with me in a closed response and that's ok. I deserved it and so did he. So I think we are even on the playing field. I probably wasn't nice and after re-reading it, I realized blogging and a bottle of wine probably wasn't the wisest choice. However, he did say that he could be contacted and see he could help. It's a little too late now and I have contacted him before with no response from his office or the people who work in there telling me to go somewhere else. I normally don't attack people without a warranted and previous burned experience. Now that we have someone else from the unit coming forward with the exact same story and lost records, no awards etc, I feel better about telling him all. So that is my next project. It might be too late for us but maybe it might alert him to some issues that are there for the others. I figure if I run into the same run around from his office like before, I will mail the same letter every week until someone answers.

I would just like someone to say "I'm sorry. I wish I had known then to help you" but then, I think I would rather have them do something to make it easier. I am tired of fighting. The Mistress will of course, apologize because after reading that post I realized I came out the fences with my boxing gloves on, fueled by courage, wine, hurt and anger in a comment he made and I wasn't probably fair to him to be honest. I still stand by the rest of my open invitation. I just don't like people telling me the Army is our family because we have learned very quickly that family shuts their doors and all of you have agreed so I know that I am not being just a hard ass that no one can get along with. That's the truth and, perhaps once he knows our story and others, maybe he will understand why I extended the invitation to come and visit his "family". I am still getting emails out of the wazoo from different Army departments just sympathizing but, some that truly want to do something. I wish I had all the hours in the world so I could get caught up.

With much of the MEB, I am going to have to pick some of the battles. Me being the person I am, I want to fight in them all but, deep down I know I just can't. I know some of it will be denied, some won and some lost. It's just the way it is. I am just going to have to accept that and, so will my husband. I've been fueled by sheer desperation, what is right and wrong an most of all? The fear of letting him down when the rest of the world did. It's time to accept that I can't win them all and some battles, even if just small...will have to be accepted as major wins especially in this life.

Doesn't mean I didn't try like hell though to win them all. 

After talking to our JAG, I appealed to him as a person to me as a person; just two human beings, shooting the shit. I was nice, and I explained why I won't give up and he explained what my best options are. I know their jobs are tough. I asked him how does he do it? Haven't you ever wondered how these guys and girls do these jobs every day and then go home to sleep at night? I have. I don't think I could do it at all. I know all of them are overloaded, buried under red tape, dead lines and cases that are lengthy that don't get closed can be very detrimental to that caseworker. I read quite a bit and am not the average joe blow and I always try to be fair, for all sides......until they piss me off and talk down to me. One question I always ask them is "wouldn't you do this for your spouse or would you just lie down and give up?". I joked and told him with as much spit fire as I have, I should have been a lawyer. He told me it was never too late. Who knows?

In other news in my crazy antics, my participation in the Dole Foundation paid off with the release this week of Phase One of the Rand Study on Military Caregivers and Families of our Veterans. I can say, with deep pride, this is one small step but what a huge jump it will give all of us in the future. It's been splashed all over the internet, all over the news and we have some exciting stuff coming with all this. You can view it here http://www.rand.org/content/dam/rand/pubs/research_reports/RR200/RR244/RAND_RR244.pdf in the PDF format, so you don't have to pay for it. I know many of the VA's read my blog (yes, I can see you on here ;) ) Please read as it might help you get some stats. I think besides this blog, doing a few news reports, I am most proud that my voice is in that Rand Study. It was long overdue and hopefully it will help later down the road. 

I am currently trying to take a few things at a time, one day at a time and choosing my battles. I am very weary and sometimes in this world of ours? It can become very monotonous to breathe, eat, sleep, dream and live PTSD, TBI, War and all that comes with it. I will try to help my husband sort out what's going on in his head and help where I can with his thinking he is too far gone. Mostly though? I think I have carried him far enough and some of this, he will have to learn to stand on his own. I realized that much of the time, I can only stand back and watch him fight his own war. It is one of the hardest things to do but, at the same time, I have myself and my children to carry too. I am working on starting my support group in the area, tossing some ideas around (keeping myself grounded though Miss Torrey on the ideas) and even pitched in with a new group called Warrior Chef. I have always liked to cook, been a been there, done that on trying to feed a family of five on a small budget and he is a dear friend of mine. It's different, it's fun and I like his spunk to get out there and just do it! Although I am many states away, I would like him to succeed in this program. I am also doing this for me. I secretly always wanted to write a cookbook so maybe this will pacify my need for that dream that slipped by. 

Know it doesn't take much to burn both ends of the candle out quickly.

So warrior wife to those out there reading; my tip of the day is that sometimes you just have to step back. If feelings get hurt, or someone gets mad. Hell, let them get mad or hurt. Whatever is not done on that small list for the day? It will still be there tomorrow. Get out there and do something just for yourself. Spin in an office chair, do something crazy you normally wouldn't do, and learn to pick your battles. There will always be battles in this life and there will always be victories and losses. Sometimes though, you just have to the strength to stand up, wave the white flag and walk away in order to save your sanity. Know and understand that sometimes there is absolutely nothing we can do to help fight the battles in our Veteran's heads except be there to support, love and encourage. It doesn't make us failures I decided, it just makes us that much stronger.......

"To fight and conquer in all our battles is not supreme excellence; supreme excellence consists in breaking the enemy's resistance without fighting."

Sun Tzu

 

I Have No Good Excuses But He Has Plenty

You probably thought I disappeared, huh? It's been quite some time since my last blog. I won't waste your time reading up on my lame attempt to make some excuses for my hiatus, but will say that it's been more than hectic here. There just doesn't seem to be a whole lot of time for anything anymore. My mind is foggy, my body over extended and my sanity? Well, let's just say it's on the verge of giving me a permanent eye twitch!

I fell outside and encountered my first broken bones a couple of days after my last blog posted. It was a doozy of a fall and well, I figured that was a sign from the big man upstairs that I am just doing too much. I had no choice then but to walk away from many things and try to heal. All healed up pretty decently since surgery but two fingers which are sort of frozen and unable to move. My sanity and stress level improved but while I had that much down time, I did the most dangerous thing a Caregiver could do....THINK. 2012 wasn't very kind to me and if I had endured any more surgeries that year, well I could literally be my own sprinkler system with as many holes as this body has had! 

We managed to make it through the the month of October with the help of my mother in law and my oldest son and husband. The lack of sympathy or any remote interest from my husband was disheartening but I don't know why I expected anything more from him. I find by lifting any expectations, I always fall flat on my face and end up with skinned knees from disappointment. I always wondered what happens to Caregivers who need care giving too? That is probably one of those questions that stumps irony.  Kind of like "where do doctors go when they are sick?"

It's been quite a road since Thanksgiving with the Army, husband and school for two of the three children I have. Thanksgiving I couldn't cook with one arm so we ended up grilling out hot dogs and all the fixings. Turned out to be one of the lesser stressed holidays we have ever had. My husband tried so hard and offered to take us out to dinner but in our rural area, it seems that was everyone's idea as well. Just the thought of the crowds, his reactions and all that comes with it? Yeah, the hot dog were damn good! Four days before Christmas our PEBLO decides to finally contact us and wanted everything done right then, right now which was literally impossible. He moved on to another station and I can't say I will miss him at all. Right now, we are appealing much of the MEB reports because he failed to do his part of his job, failed to add in a few important details and for some reason; proof reading and correcting things that are important went by the wayside. We haven't even heard from our new PEBLO yet and of course, she is new so it should be interesting. New people seem to always be a challenge to break in, kind of like a wild horse. It's amazing we haven't scared off our Federal Recovery Coordinator or our Army Recovery Coordinator. They must be gluttons for punishment but I am so glad they have stuck around to see us through. That, and we are probably good dinner table talk and worth a few laughs here and there! I love that I can call one and she has a great sense of humor. She must wonder if I am on the thresh hold of running a circus here.

Christmas went well with few minor hiccups along the way. My husband had some bad days but at least we didn't have to deal with suicide attempts, drinking binges or anything serious. However, New Year's came and he went to see a friend up the road and never came back. I don't know why it bothered me so badly that he just ran and disappeared, but I feel not only a responsibility for him but it was New Year's Eve too. I wanted to bring it in right and I am hoping like hell that the whole old wives tale of "what you will be doing on New Year's Eve will be what you will be doing the whole year long" is just a crock. If it turns out true, I am not going to have a good year as I spent my New Year's up all night, crying. I was hoping we would be having sex or maybe share some laughs while we watched the ball drop in New York City. At this point, I would have been happy just going to bed together early and not doing anything; not crying though because my husband stood me up for a friend that he couldn't care less for. I think I was more hurt than anything. 

Excuses and Lies

My husband has a ton of them and lying has become a serious issue now. Excuses for his behavior, excuses for where he is, excuses for getting angry, excuses to the kids, excuses for everything. I am so sick of hearing them and they are constant with no rest. If it's not a long drawn out excuse, it's a lie. He is a horrible liar and most of the time, he won't even look me in the face. I especially hate when I ask him something because I know he is lying, he looks away and says "huh? what? huh? I didn't hear you?". Seriously? It's like watching a child make up an excuse to not listen to your question and then try to back peddle into a good lie to cover the real reason why he spit on his brother or why he lost his report card which had an F on it. I am not sure why this started all of a sudden but all I can think of is dammit, haven't we already been through this in the past? I used to think that PTSD/TBI had a pattern during certain periods of the year. Holidays, major event "memory day" and the rest just falls in the "other" category. Over the past five years of living with all this, it has bettered in some areas like the abuse of alcohol and suicidal tendencies but worsened in other areas. Major events I thought we were done with but after thinking about it....it just repeats itself. Every. Single. Year. There is no break from that and I realized it's just a vicious cycle that we will repeat over and over again just a little different each time. 

I just can not tolerate lying. I try to teach my children they can tell me everything, even if it's the worst. My husband and I built our relationship on that foundation of trust, honesty and friendship. I never have had that tolerance and the worse part is? I don't lie to him and he would always tell me everything. I feel guilty NOT telling him something even now. I think the part that has the highest "suck" factor is that the lying is nothing really that important to even lie over. I mean, if you are going to lie? Lie big or go home right? Don't lie over silly small things. Now, its not the "I just forgot and I need to lie to make up for the fact I don't want to admit it" just for clarification. It's just lying to be lying. I am at a complete lost at this point and I found dealing with him this latter part of the months I have been gone, has really reduced my toleration for a lot of things.I am pulling myself further away from him to protect myself. I am starting to look away at certain behaviors because it just isn't worth the damn fight or listening to the lies. I don't know if it's him or if it's me slipping further away.

Funny isn't it, how you fall in love and when you look at this person who has swept your heart away, you don't think of what you will deal with in the future. You never really stop to analyze at that point, of what would be the whole picture because one really doesn't know right? You just know you are supposed to be a part of that person and that's all that matters. Any obstacles you can overcome you think, any burdens you will carry together and all you really focus on is happiness with that person. You just know your life is never going to be the same. Boy, wasn't that the truth! Here lately though, I feel like it's more of a "phantom limb" situation. It feels like he is still there, still a part of me but you can see it's not there. The worst part is, my trust had been broken so many times that it took a lot for me to open back up and trust him once more. One year of therapy, lots of break downs and chastising myself for not forgiving and it led me here. I don't know if he even remembers the past of the wrong doings, or even acknowledges that broken trust is truly hard to gain back. I wonder if he knows how truly hurt and disappointed I am in him right now? Does he even really care anymore about anything? Now I feel like he has broken it again and again with just stupid and tiny lies, so how does one trust again? Sometimes I wonder if he knows that I still think he hung the moon just as I did the night I met him? Regardless of the bad times, I never once faltered on that thought.......

Sometimes I question the whole "is this it for the rest of my life?" probably just like my husband does. I am sure everyone does, I don't care who you are. I mean you fall in love, you get this person in your life that you love and learn to lean on. Then all of a sudden your on your own. Seems somewhat unfair and I have to question the whole "plan" for me because I just don't get it. So far God has given me the strength to carry my family and myself through, the courage to take on more but what are we really gaining? That part bothers me the most and heaven help me, I just want a small hint. Anything that says "this is where you are heading" because right now? The directions I am seeing are more like my stupid GPS with the lady and her perfect voice stating "recalculating" over and over again. Yeah...ain't that the truth!

There are days where he is truly appreciative of things I do for him or how much time I put into advocating or representing him. I do not hear "I love you" which to me I long for more than anything else. I wonder why three words are so hard? Often I wonder if that means he doesn't anymore? There are other days though, he could care less and I don't think he "sees" me anymore. As long as things go the way he wants them to, as long as it benefits him....it's all great. Of course it is, it's great for him. Anyone else though be damned. I hate thinking this way, and like I said before...thinking is dangerous for us caregivers and spouses. Thinking to me is like mopping. You start mopping but sometimes we don't always pull out the fridge or the oven right? (if you do every time you mop, that's just weird) All that stuff gets built up under there but eventually sometime, you clean under there. When you pull it ALL out, you are horrified at how much shit comes out. Yeah....that's what thinking is to me. Strange way of describing it but then who said I was normal right?

I wanted so badly this year to be a better year, but so far it really hasn't impressed me much. I will say I am trying to focus more on me. Maybe that's where we are all going wrong. Perhaps we should just think of ourselves and "put on our safety O2 mask before others". I think many of us caregivers focus on everyone else but themselves and I know how hard that is to change. I am the worst to take on everything for everyone at any time and its exhausting. So I am trying to get caught up, better organized, finally catching up to some movies I want to watch, and even bought myself an Xbox game. Now for many of you who don't know me, I haven't played a game system since Nintendo and Sega came out although I was the queen of Pacman and Donkey Kong once upon a time. I was pretty good at Super Mario Brothers too. Haha! I made myself a promise I would keep blogging and just putting it on my weekly "list of things to do". I am trying to keep up more on my facebook page, I taught myself to "tweet" (@Unclesamsmiss) in which I am quite proud of (yes, USM is not technically savvy; see above mentioned GPS comment) and planning on skipping town to see my sister who lives in AZ in which I haven't seen in years.

I am trying to do more things with  my sons albeit hard because I feel some of it should be done by/with daddy and he just can't do it. I realized my two younger sons, due to living in a rural area, have never ridden a bicycle which I hope to remedy soon (somehow). Leaves me wondering how the hell I will find the strength or the courage to teach my oldest son to drive who started Driver's Ed this semester. I honestly did try the whole "list positive things" on a piece of paper or journal bit that's been going around as a bit of therapy for Caregivers. I so far had a few positives like "we are all here", "we are all healthy somewhat", and the rest? Well, I had "I positively suck at the MEB stuff", "this list positively sucks", "I completely suck at Walking Dead on Xbox because I can't figure out the damn controller", "This list sucks" and "this list positively sucks ass". Perhaps that's why so many major organizations don't want to accept me as a writer....it's my award winning positive thinking isn't it? **cheesy grin**.  Hey, at least no one can accuse me of not being honest.

So here I am. 

Still alive.

Still trying to figure everything out and crossing off the things I don't understand.

Come On, 2013...

Mama needs a new lease on life. 

Recalculating, Recalculating, Recalculating,

  

Defending Your Life

The biggest challenges of living with someone who has injuries like PTSD and TBI, is the constant defending of the Veteran's life and that of ours. We sometimes live in silence due to fear of judgment of the outside world, in some cases, Child Services is a fear, and in others; the look of pity and the confusion that crosses people's faces when they don't really get it. Not too long ago, I didn't understand either and I try to be patient with people who show disdain or make judgmental comments albeit hard to bite the tongue. If not for me, deciding for myself and for my family five years ago...I wonder who would have educated me on such subjects? The outside world isn't the only ones we find ourselves in the defensive position. We must defend the injuries to the military branches and hope like hell they don't drop us over a large cliff somewhere, hoping we will just go away and not get back up. The promise of "The VA will take care of you my brother/sister" falls short and here we go right back into a vicious cycle of defense. We must then deal with the VA systems where many are finding they are having to fight for their rights and benefits promised to us and earned. In many cases, like that of Social Security Disability, some of us find ourselves facing hearings although the medical files are a zillion pages long.

We recently found ourselves in that exact position of trying to defend my husband's injuries to an attorney who had no idea what either injury was, or how it impacted his life and that of mine. I don't mind educating someone, advocating on these issues but there comes a time or two I wish that I could just walk in and say "He is a disabled Veteran with these injuries" and someone say "Oh no worries! I know all about this". Even our local American Legion VSO officer who is known for his shark like approaches and wins for Veterans, told my husband he was too young to give up and to get back on the horse and just ride it. "PTSD is just a nice way to say your depressed. Take a pill and deal with it". If only it was that simple......

I sometimes feel like the world just left us behind. I know during deployment that my husband had no other choice but to leave us behind in his mind because of his job. Time stopped for them but for many of us who survived deployment, it kept going slowly. It was always nice to drive down the road and see a fellow "Proud Army Wife" sticker on the back of a car, or a "Support our Troops" bumper sticker. For all those, it made the time worth it because I thought a bumper sticker showed pride, love of our country and respect. When they come home, the clock suddenly speeds up for all of us and we see that we just don't seem to fit in anywhere in time. Those we thought were friends have quietly withdrawn. We ourselves, have withdrawn into this safe haven we call home. After five years of this haven, it starts to feel like a prison. There are days where I drive down the road and I see my house that I fought for so hard to keep, we saved so many years for and represented a new life for us....and it now has an ominous look to it. It feels oppressive, suffocating and safe all at the same time.The bumper stickers we now see are faded from the sun, scratched off from many washes never to be replaced again. I sometimes wonder if that bumper sticker represents their pride still and respect? Or is just as faded, long forgotten and washed away from the sun and the rain?

I like to think of the positives and its probably my biggest downfalls as I am prepped by a past family who ran a Plan A, Plan B, and Plan C when all else fails. When it comes down to say, the Social Security prep for the Hearing, and being drilled for five hours of grueling, bombarding questions of why we think my husband is disabled; it makes one think about all the wrongs that is in your life. We live in a certain lifestyle, we manage routines and structures, we try to be the best parents we can be even when one really can't do that. We deal with the obstacles, the ups and downs of emotions, the weariness of fighting all the time with the government and its become almost numbing and we then learn to do it almost by rote now. Mechanical movements almost with absolutely no show of emotions. To have an attorney not take the time to respect, show some sensitivity as she was portraying the Judge and how he will ask; was to say the least a little disheartening. I left that afternoon with a raging Veteran and a screaming three year old and cried all the way home. I have been put in certain positions and Lord knows had my share of stupid comments stemming from just ignorance, but never before did I feel like we don't belong anymore than I did that day. I felt horrible we had to put my husband through that, I felt ashamed and almost embarrassed for the attorney and most of all? I was angry.

It dawned on me that we just sat through five hours of defending our lives, to someone we are paying to defend us. It's difficult to pick apart your day, and to really look deep at what our Veterans do and can't do. To pick apart every little detail of what the spouse/family/caregiver does and then try to all of a sudden deal with the realization and try to defend it. It was five years all over again suddenly in front of the woman who is to defend my husband's rights and entitlements to Social Security Disability. Of course, I know much of this is a formality due to age. It's common knowledge that Social Security would rather pay out for an elderly person who might have ten to fifteen years left of their life span, than that of a wounded thirty something Veteran who will outlive the elderly person times three or more. Having to explain and defend our life just suddenly felt wrong, and we were both very vulnerable in front of her. I guess most of it is because we were one of those families that didn't get dropped off the cliff but thrown off. We fell in a crevice so deep it took us two years to get out. To be fair, the attorney didn't know our history. Didn't know the first thing about us except for our names and partial health history. It was just the fact we still to this day after five years, still keep defending ourselves.

To add all of this on top of the Medical Board, you then find you are defending yourself and your Veteran with the rest of the family. You find you are trying to explain to your children, then must deal with all the immediate family, in-laws, outlaws and the rest of the gang. Sometimes its tiring to hear how someone has a bad back, but Lord have mercy and "bless their heart" they are disabled and just can't expect to work. Someone else has cancer, or a bad car wreck...its the same "bless yer heart" and "what else can be expected of them?". With this though....its harder. Most of what I hear is "leave him". "Cut your losses and run". "I just don't know how you deal with it". Even with our Southern Appalachian twang, I hardly ever get a "bless yer heart". I still to this day wonder why that is? I find that I now stay away from having to explain it all over again to say, a non-profit organization. I know they don't know me, I don't know them and its just not worth the breath trying to get someone else to understand. The most that anyone has understood our lifestyle is those that live with it. Unfortunately, I am having a hard time finding those "others" close by although I can feel them nearby.  This leads me to some anger because I wonder why they can't step up, allow me to have someone nearby who is raising their hand with me. It's not that I am afraid of pioneering my way through a backwoods moo-cow town area, but God sometimes I wish I could just find someone.

Anger seems to fester quite a bit with me these days. Most of the time, I can walk away and try to focus on something else but it still is there. One thing happens and before I know it, I am angry about the last damn five years. I am hoping since I am receiving counseling, that is one of those things that I can work on as its just not me at all. I love to laugh, love to smile, love to talk and most of these I rarely do unless its with the right people. My defenses have been built so high I often wonder if I ever will be able to let them down? Or will they permanently stay up and how much will I miss if I keep myself closed off. Some of the comments made I can always deal with, shrugging them off with just raising my chin a tad bit higher. Some of them hurt to the core and those are a little harder to shake but I do it none the less. Explaining I can do, but with as much news and media is out there in regards to PTSD and TBI (minus all the negative crap) you would think people would pay attention. However, I have found that most people know more about the Kardashians or the infamous "Octomom". Why is it our society can worry so much about who wore what to the Oscar's, or what the latest gadget but yet, do not know that 1 Veteran in every 80 seconds commits suicide?

I think my frustration comes from having to try so hard to defend my husband and the reasons why I stay with him. Not from explaining his issues and not be ashamed of them, but feeling like I MUST defend us because there isn't anyone else there to speak out for us. Yet, "Octomom" seems to get front page Yahoo, and is one of the most "clickable" likes on Google these days. Some days I wonder if it will ever end, even after we leave the military and we finally get settled with Social Security and the VA. Or will we always be destined to defend ourselves to others and more importantly....trying to explain to ourselves that this is just the way it is and there's nothing we can do, than what we have already done. That is to keep going and survive.

Survival 101 Completed and Passed,  

What's It's Like To Live With PTSD and TBI

 

I recently went to the grocery store the other day and as I was loading the car up, someone saw a sticker on another car's window that said "Medicated for your protection-Veteran with PTSD". My husband and I have always maintained a good sense of humor and not been ashamed of his injuries including his PTSD. We recently ordered such a sticker for our vehicle and obviously the owner two cars down, had the same sense of humor as us. As the lady walked past with her husband, she said "I wonder what it's like to live with someone with PTSD?" with the same disdain in her voice as if she asked "what's it like to live with a monster?". I hung my head in shame as they walked on chatting about what they thought our lives would be like but as for me? I didn't even have an answer at that time and so I let them walk on by. Normally, the Mistress would be the first to stand up and educate, erase stupidity and hope like hell that the media hadn't completely ruined someone's idea of what these invisible wounds are. I just couldn't and didn't have the strength that day.

On the drive home, I asked myself "what is it like to live with PTSD and TBI?" and the answers flooded me as the silence of the car wrapped its safety blanket around me. I had to pull the car over to the side where I could rest my weary head against the steering wheel and just let the tears come. Why could I have not stood up and said "You want to know what it's like? Here ya go, Lady".

It's waking up every day not knowing who you will wake up beside or what kind of mood he will be in.

It's living with a total stranger that you must care for and be treated like the enemies they fought against in Iraq.

It's eating breakfast, lunch and dinner at home or out always every day, by yourself even when your Veteran is with you. 

It's never having your spouse to talk to anymore. 

It's trying to soothe the fears of people he can see on the side of the road even when you don't even know why he is so afraid or what to say to make it all go away.

It's assuring him that bags of trash or dead animals on the side of the road are not roadside bombs.

It's not being allowed to enjoy happiness, love, or things you can enjoy because he gets jealous and ruins it.

It's being blamed for everything that went wrong, including what happened in Iraq. 

It's sleeping next to someone who never goes to bed without nightmares and you learn to expect each and every sleep walking move he makes. 

Its watching someone every day who gets worse with OCD behavior that you can't explain or understand. 

It's lying to your friends, family, co-workers, and acquaintances that "everything is just fine" including yourself.

It's being challenged in every way possible with some obstacles so difficult that you don't know how to get past them. 

It's loving someone who hates everything about you no matter how hard you try or how much you help them.

It's fighting for someone and loving them so much that you sacrifice it all only to have them push you away.

It's having someone be so terribly cruel and know it, but finds it easier to walk out the door than saying "I'm sorry". 

It's knowing medications, appointments, and his VA medical records like the back of your hand and not know when your last or next doctor's appointment is, or even when the last time you had a break to yourself.

It's taking care of them every single day when they are sick, but never get the same in return. 

It's a game of pleasing, soothing, calming and redirecting twelve or more hours a day just to keep some sort of peace in the house. 

It's being a single parent and having to explain to your smaller children that their daddy really isn't mad at them, he is just sick. 

It's juggling parenthood trying to be both mom and dad at the same time. 

It's having every special occasion ignored, sabatoged or completely forgotten about. 

It's having everything taken away from you and not understand where it went. 

It's not being allowed to cry, grieve, be angry or have feelings hurt because you are supposed to be what they want you to be. Mine would rather have us all miserable than enjoy anything he can't.

It's fighting against something much larger than yourself and wounding yourself in the process. 

It's having to take care of yourself without help from your partner because they just don't care and don't want to.

It's not being able to have civilian friends or even normal military friends because they just don't get it. 

It's finding comfort among others like us because we don't have to explain or be ashamed of their behavior.

It's walking a crumbling walkway and losing your footing with no one to catch you if you fall. 

It's talking rationally with an irrational person.

It's having your heart trampled on every single day but still finding the strength to keep going even when they tell you they would rather be dead. 

It's saving their life only to have them blame you for it every day thereafter. 

There are days where I swear I don't know where the strength comes from. Other days, I am so weary to the bone that its hard to put one foot in front of the other. There are days where I feel sad for him and that makes up for half of what he has done wrong. There are days where I know I am all he has. Other days I love the hell out of him. There are other days where I wished I hadn't saved his life. It's living the whole concept of Misery Loves Company because even when good things happen....we don't know how to react because we have lived in chaos, stress and bitterness so long that it's what we are used to. It's wanting more out of our lives and still getting hurt, even though you know in your heart and mind, that is all you are ever going to get from them. It's being in a crowd and knowing that not one single person hears you no matter how loud you scream. It's knowing he will never hear you at all.

It's a battle with the world, with them, the government, the military and with yourself. You argue back and forth the reasons why you should stay or why you should run on a daily basis. The list grows every day with reasons on both sides of the argument leaving you no answer that is reasonable. It's living without a safety net to catch you if you fall and knowing there is no future that you can count on because you can only take it day by day, hour by hour. It's watching them forget things, get frustrated because they are no longer able to live a normal life, and watch them helplessly sinking further away from you when some days bring them the truth that they are disabled for the rest of their lives. It's not knowing what else you can do to help them and when you reach out your hand to hold theirs, they smack it away. It's taking on the world for them and sometimes winning, only to have them not care one way or the other. It's backing them up only to find them turn away from you when you need them the most.

There are days that we live for when they smile, laugh a little, and try just a little harder. That's what gives us strength. There are others where the bad side comes out and you are worried not just for you and your family, but for them too. It's up and down, side to side and never knowing which direction you are going.  It's about survival, holding your family together through the tough times and not having all the answers. Sometimes, we lose it all. PTSD alone can be like a pack of hungry piranhas going after the first drop of blood that is spilled and not knowing whether we as the family will walk away whole. Other times, laughter and a good mood can build us back together.

That's what its like to live with PTSD and TBI. 

I wondered all day today if I had simply spoke up...would that woman have listened and maybe not have such a nasty tone and disregard for us? Or would she simply just not care. My husband cared enough to go overseas and fight proudly. I cared enough to wait for him to come home and gone through hell ever since for people like her. I wonder from time to time, how many people really care and appreciate what they have and what they have been given. Does anyone really care about anything anymore other than themselves?

We Are More Than A Bumper Sticker,

Monumental Victories and Then Some

Since my last post, it seems things have settled back into a semi-screwed-up-normal-for-us routine. Really, it's been busy since my husband's C&P evaluation back in February. I may have mentioned that the C&P really went well with such a nice doctor, that I would like to send him flowers! For many who know me well....pfft that is just mind blowing there in itself! Moi? Send flowers? Hell hath frozen over right? Yes Dear Readers, you read that last statement from the Mistress herself. In the past five years, I have to admit that the pages in my mind of the VA have been roughly colored with some really bad crayons. However, the last few months have given this gal some appreciation for the "good" guys that are there and who care. After the C&P, its been rough though here at home. More so because I was so relieved and for once, things were going in the right direction for the first time since he landed after coming home from the war. All we could do was wait to see what happened which led him to worry. Things started to happen that I didn't think would ever come to pass. Some things happened that seemed like it would be a million years away...and here was my husband still not happy with anything only slipping further from me in the process.

A while back, I posted a blog about JP Morgan and Chase and Bank of America now providing military services for Wounded Warriors and help with foreclosures, percentage rates, and mortgage payments for ALL those who are military and Veterans. I worked with Chase and applied for the percentage to be lowered on our rates and in November of last year, we were notified that we were 1 of 100 military families that JP Morgan and Chase wrote off the mortgages and debt for. I really didn't believe it at first and I must have given them a "You have got to be screwing with me!" lecture on the phone as Fed Ex promptly showed up the following day with a letter acknowledging such a write off and a "Yes, we are serious". As of this past week, we got our home deed and property title. We never expected such a gift but I have to say that Chase bank treated us kindly and really cared about my family and my husband. They listened to me...and for the first time, I felt like some of these corporate, large businesses really heard what I had to say. Matter of a fact, I spoke to our Military Services manager so much that I indeed will miss talking with him! We were blessed to have such a gift given to us and what a relief as we didn't have to worry about our mortgage anymore which was about the only thing we had left that was truly ours, our home. Everything else we had has been sold off, savings dwindled down to zip, and we weren't even making it month to month.

All this stress was on me and lord knows the gray in my hair shows it! All I could do through the hard times was say "It'll be alright! We've made it this far! Don't give up on me now!" like some cheerleader with a plastered smile that fractured and crumbled when I climbed into the tub alone and sobbed. Then I would go to bed at night praying to God that he knows what he is doing. Hoping he knew what his plans were for me and that I was seeing the signs. Then I would sit awake for hours soothing my husband's nightmares all while making myself believe that everything will be ok. The rest I figured would work itself out, and kept everything I had crossed so I wouldn't let my family down. The scariest part was the fear of letting my family down and all of us falling apart.

Our biggest hurdle was the VA and to be honest with you, you must have seen and read how scared I truly was about this C&P re-evaluation. Why I don't know because all the medical documentation was there but with the luck we have had....nothing scared me more than having someone do it who could have cared less which is exactly what most of us have encountered. I kept planning for the worst, having a back up plan for even far worse news, and a second escape in case all else fails. To be honest with you, I didn't have a back up plan for my sanity or a magic pill to give me more strength if that appointment had gone badly. We assumed the VA would keep my husband at his regular rating, leaving it at temporary once more. We would be put back into limbo until at least, the PEB was done. The letter stated that the VA decided, based on medical documentation and case files, that my husband had been awarded Permanent and Total disability.

I have to tell you that looking back, I don't think I have cried as much in my entire life than I did then. It was monumental...I wanted to cry, laugh, breathe, exhale, scream, shout and run around in circles kicking up my heels. If you are old enough to remember the movie "Rocky", yeah it was pretty much the whole "Eye of the Tiger" moment for me. I couldn't wait to show my husband, thinking YES! FINALLY! Maybe now he can relax. Maybe he will finally see how hard I have fought. How I stood up for him and many by voicing our story. How I may not have taken a bullet for him, but took many blows for him these past years. I thought maybe he would now know how hard I worked the past three years, and know I did it for him without a single "I love you" in return. Maybe just maybe he would know I loved him that much to fight.

When I walked in with tears and sputtered out "You got it. Permanent and Total". He said "Sweet". Sweet? That's it? I cried harder. It was a victory for our family and won that had many many costs that can never be paid back and that's all he could say was "sweet"? He went outside to putz in the yard, pulling at some weeds while I fumed all while crying. How could he not be appreciative of this? How could he not feel blessed? Have I truly missed how selfish and self-absorbed he had become? Why could he not let me just celebrate for all the work and finally exhale all the stress I have carried for all of us?

So as I chewed on his nonchalant attitude and envisioned the full "Hell hath no fury"  I wanted to invoke upon his ass, all while preparing the speech of "Do you know how many other Veterans are suffering in the same situation and worse off than us?". I got up to go chew his ass out but then I saw him staring out across the yard with his hands in his pockets. I stopped myself and although I really was hurt by his attitude, I instead walked back in the house. Selfishly, I wanted to be Balboa knocking it out of the park in the first sucker punch, and wallow in the victory and relief I felt. I made it through the hurdle that has made our life hell on earth and I am still standing. It didn't dawn on me until I saw him looking out over the lawn how lost and sad he looked. Although just feet away from me, he looked so far away. 

I realized then that it's not about money, it's not about the win, it's not about the disability with our Veterans; it's about losing. I watched him through the window and I realized that award letter really meant nothing but  knowing the rest of his life, he will live the war. For the rest of his life, he will engage in the battle of the mind with demons I can't save him from and here I was....wanting to celebrate. My husband always worked, I always worked. It was how we were raised. Everything bought was worked hard for and treasured. So while it was monumental, a blessing and one that was out of left field...I am not sure if he feels happy, sad or really anything. Victories these days for families like us can be sometimes disguised as happy moments until you sit and further dissect them. You want to relish in the happiness but then when you see your Veteran's face and hear the question of "what am I supposed to do now?" it breaks your heart because honestly, I don't know. It hit me then that this blessed award letter was merely a chapter closed in his life and now he isn't sure what to do. I have held his hand, stood in front of him, took the stress away, protected and loved like hell...but that simple question? I could not answer.

With those two victories, we were also able to get an attorney for the Social Security Disability claim we had been previously been denied twice on. From a referral from another Veteran's wife (Thanks Rebecca), I didn't have high hopes as we had already gone through a list of seventeen with no luck. This one turned out to be one who seems to know what he is talking about, knew exactly all the military jargon and the VA which was nice not having to explain much of it. Within half an hour, signed, sealed and delivered was our response for the hearing and an attorney we gained. That was another load off my weary shoulders as trying to rationalize with an irrational person, why SSD wasn't automatically granted in three days was becoming a topic of soreness with between my husband and I.

We ended our week last week filing what is to be our last tax return until (if) I can go back to work. Uncle Sam was generous this time but it dawned on both of us, that not having to file a tax return just seemed....weird. Kind of slammed the door on a lot of things as silly as it sounds and my husband has been withdrawn ever since. I have seen more enthusiasm in the latest "I'm Sexy and I know it" M&M commercial that he finds amusing than I have with any of these things that have come into play. I know its been a rough week with lots of mixed emotions and semi-finalization of things in our life...that I shouldn't expect anything more. The fighter in me wants to celebrate and go another round in the ring, but the wife in me still desperately wants to lay all this at his feet and say "here. **POOF** you are all better now!" I wonder from time to time though, if I am fighting for all the right reasons. Am I fighting for my husband because he like many others, were broken and discarded? Am I fighting for love? Or am I simply trying to pathetically gain wins so I can make him happy..........

We don't talk much anymore and if we do, its mostly about appointments or something in the news. I hate to call friends and spread our good news because I know in the end, I will get off the phone and feel horribly guilty because we got what they have been fighting for so much longer to have. It's not fair it seems so I don't say anything at all. I would never want them to hurt or to feel angry with me. The silence is killing me though and its a shame I talk to our Federal Recovery Coordinator more than I do my sister. I will keep going though. I understand my husband but it doesn't mean I can't secretly strike my best Rocky Balboa pose and scream "YES!".  I will keep digging and hope that finally I struck victory at the bottom. As always...I will leave a light for him to follow if he needs it. Next hurdle is the Physical Evaluation Board, but I am not so afraid now. I can do this. I am ready, US Army. Bring it on.

Wiping My Weary Brow and Raising My Dirty Shovel For All Of Us, 

Question From a Reader "Do you Feel........"

This question came in my email last week and after thinking long and hard about it, decided to see if I could print this and to my surprise she said yes. 

"USM, I am taking your suggestion and teaching myself to blog. When I sat down yesterday to start, I had to delete, omit, then take out some more because of family and friends. How do you do it without feeling guilty? Do you ever worry about putting it all out there, or sometimes bad mouthing your husband to the world? How do you deal with the comments and emails? I LOVE your blog, but often wonder how do you not get into trouble by saying some of the things you do? How do you do it all without feeling guilt at all? Do you beat yourself up later for the things you said? I also get scared that it will backlash on me. From a HUGE fan in Snowmass, CO."

Ahhhh I wondered when someone would ask me about 'Guilt'. First off Snowmass, I am thrilled to see that you are taking on blogging. I once read a quote that was always my favorite from Will Rogers, "Even if you are on the right track, you'll get run over if you just sit there". Means, you need to always do something even when it all feels ok. I find that blogging, using a journal and such things, are therapeutic, accessible and feasible for those of us who need to find some type of outlet when we are facing challenges of the standard outlets such as group therapy, support groups etc. I had to really think about this because your email stumped me! I rarely get asked direct questions to me. I thought long and hard and the answer is.....sometimes. I am starting therapy via telephone, believe it or not, and during that I discovered that Guilt is my biggest downfall. 

When I started blogging, sometimes my husband would read and sometimes not. Most times, he gives me ideas on the topics I choose or something he says he wants me to mention. He without knowing it, creates the subjects I write about. Often times, my children say something or most of the time personal experience builds my decision on what to talk about. While some of you might think "shame on her" because of what I said about my husband, it is nothing we haven't discussed or anything behind his back. Although silence is an issue at times, we do have conversations and of course, arguments and often these things come up. Is it too personal and am I sharing too much? Possibly. However, when this blog began to pick up with readers and the amount of hits it was receiving, my husband said the most powerful thing he ever has to me and that was "If you are going to do this, don't do it half-ass. If you can help but just one person you did something important.". I had a comment the other day on my Facebook page for this blog, asking if my husband could sometimes comment or write his point of view. What you all don't realize is, he is here in my writing just the same as I am. I have my days, and that reflects in my writing of course...but I don't think I continuously "bad mouth" my husband and often put his point of view in there, such as thinking I am the enemy or how he feels. His words, not mine. This blog is a combination of both of us; its a part of my whole family. We have walked this road alone for so long that we don't want to see another one of you do it on your own. If that means telling it all, well then we must. We both decided that we would stand up, and say you know what? This IS what is real. These are our feelings, all that we are and all that we will be.

Now, guilt from it all? Of course. I am human. I feel anger, bitterness, frustration, love, happiness, sadness and emptiness but, all of those I can compartmentalize, shove back and try not to let it run rabid. Guilt though is harder to push back and often does eat at me. Is it because of my husband or my family? Not often but sometimes I wonder if we did the right thing by blogging about everything. For the rest such as the VA, the military, etc? Most definitely. I will admit that when I hit "Publish Post" I realize that there are dozens of VA's , dot.gov, and dot.mil addresses across the United States/world jumping on each and every post and staying for a while. I worry that when someone reads my posts, and knows who I am in real life they will be angry or pissed at me. However, the ones who eventually do find out they are rather surprised rather than upset with me. I have been nicely told to stop, casually mentioned not to bring up certain subjects, told I really didn't need to post this or that, and I often wonder if some just get scared of me because I am blogging. The biggest thing that bothers me is I don't want people to help me because they are afraid I will blog. I want them to help because that's their job, and that they do their job because it IS a wounded soldier. 

There is a reason why I write under a pen name. I really don't like people knowing who I am and there are only a trusted handful that do know who I am, other than our local VA etc. Anonymity is a wonderful thing, and after a long talk with a spouse the other day, she mentioned that I did a good job keeping my identity safe as she didn't even know who I was. I am a book lover and history buff, and I knew that many past historical authors like Dr. Seuss, Mark Twain were all created names. Many women of the 19th Century wrote under a man's name because that was the only way they could be published and since this is a long way from the 19th Century, J.K. Rowling of the Harry Potter series is also considered to have a pseudonym. I created my pen name to write under because it was easier, to be honest, to write behind that smoke screen. It gave me strength if that makes sense and the cajones to talk about tougher subjects. 

Often times, confrontation and I do not agree. I don't think of myself as a fighter, a leader, or any of that so its easier for "Uncle Sam's Mistress" to get the credit than me, myself and I. I don't give our location, our doctor's names, anything that says HERE I AM COME GET ME. I don't think I have talked about anything that is going to cause some men in black to show up at my front door. However, in all of this, I did get help and that meant telling some who I am in real life so we could get that help. Did it bite me in the ass in the long run? I am not sure. That is a debate that I am still trying to figure out and counting the steps I am taking. Have I been chastised for blogging? Of course, but you know what? I figure this is my right, my husband and many many others fought for that right and not one single time, have I never NOT spoken the truth. If you failed me, I am going to say something about it. I also say, if its the truth and people get mad? That means they are worried. 

I will admit, its easier to throw on the superwoman cape, write under the elusive Uncle Sam's Mistress, and way much easier for me to answer each and every email. I think looking back on it all, the most thing I feel guilty about....is not having all the answers for many. I am not a professional, never claimed to be, and only share our personal experiences, victories and failures. However, some find that I am an easy person to write to, especially  my Veterans and soldiers. I sometimes am the confessional priest, but I don't know how to answer or what to say. Some stories are harder to read than others, some make me cry at night when I am trying to wipe my own day of worries away and sometimes...some stories make it all worth while getting into trouble, or having people treat me differently because I wrote something online. I sometimes feel guilty because I wish I had someone to confess to, and I really don't accept to all you out "there". 

Back lashing from comments, I rarely get. On a daily basis, I get more good than bad. I get more emails than comments, and that's ok because I understand the need for people to email and feel that cover too. However, because it is an email sometimes the anti-war people can get more carried away, weirdos get loonier and sometimes the conversations can become quite graphic on their part. I thank the good Lord for patience, forgiveness and the will to hit delete when I really want to respond back. I can say ouch, yeah that hurt! Hit delete and try to move on from that without stooping to their level. Some comments are kind of hateful, but everyone has their own opinion. Some think I am a martyr because I stay with my husband, some think I am courageous....it doesn't really matter what people think. It's what I think about me is the most important thing.

As a blogger, my suggestion to you is if you feel fear, retribution, insecurity...create a pen name and just leave it at that. There is no reason to state your name, your residence etc. You can be whoever you want to be and maybe that will find you the strength you are seeking. If you feel worried that your family will see it, or you don't everyone knowing ALL your business...then do it that way. A good friend late last night asked me if I was willing to walk the line, and I said yes. So ask yourself Snowmass, are you willing to walk the line? If you choose put it out there, it is done. You can delete all you want, but you can't erase a person's memory or knowledge. However, in the same late night conversation, we bloggers are probably the safer majority because we DO put it out there. I kind of feel that if we don't though, we won't ever get the help and we damned sure didn't learn anything from our past wars. You have to decide what you are most comfortable with doing. You must in the end, choose of what you write and how much you put out there. In the words of my husband again, I tell you "If you are going to do this, don't do it half-ass. If you can help but just one person you did something important". 

I hope this answers all your questions Snowmass. I sincerely wish you well on your endeavor and your decisions to blog. I will be rooting all the way from down here in Moo-Cow Town USA if you choose to do it. It is a good outlet, but in the end...you ultimately have to decide the consequences, the guilt and how to write it all out. If you should choose to use your name, and feel you have to omit some things...well, I kind of think it's a waste of time if you feel so censored. I just wouldn't say anything to my family or like some, just leave that out all together. There are many many bloggers out there who feel like you and some who censor themselves while others let it all hang out. It can be a wonderful thing, and sometimes it can be a hard thing. It's all about your level of comfort-ability, because if you are comfortable writing....your words will flow and be comfortable to read and that my dear, is your ultimate goal. To get it all out, to take the burden off of you, to let it all out and then let it go. Just ask yourself as I did....How much do you want to let go of?

Thank you for the email and making ME stop to think for a while,

VA Caregiver Program

Many of you have written in to ask about the New Caregiver Program for post 9-11 disabled veterans who require care full time or assistance with daily living. There are some who haven't either heard about it, have some misconceptions, ideas, and yes, even a few think it's a little scary. It's a VA program so yes, I was worried too, I'll admit. I am hoping to write this out to answer some questions, provide some information on it for those who need it and clear the path of the unsure for others. Our process believe it or not, honestly wasn't bad at all. Y'all know I will shoot straight from the hip and tell you how it is!

When it first started, I didn't know anymore than just rumors that it was being put into place and getting set up. Our Federal Recovery Coordinator told me about it and being the upbeat and dear person she is, encouraged me to contact them. I called on several occasions when it had just started. When I mean just started, I mean like they had just turned the 1-800 number on and the people answering were just as baffled as I was. There was some confusion right at the beginning and to be honest with you....I really kind of checked it off my list of things that the VA had to offer. I had the same idea that many of you have of "Oh God, here we go again. Just another promise, but no follow through"! After the third call that left me filled with more questions that what I had to begin with, I figured that this wasn't for our situation. A month later, my dear friend Brannan at Family of a vet encouraged me again as well as our coordinators assigned to us. The requirements for the program were a bit confusing, parts still being adjusted and tweeked; leaving still quite a few of us out that didn't really fall in the guidelines.

As the time went by, the Caregiver Program was often brought up to me and I explained the reason the 1-800 number told me I didn't qualify. As many of you know that follow all the time, my husband is still considered in service although not able to serve. He hasn't served since December of last year with January's "bottom falling out" sealing the deal. Now with us, we have asked about the Med Board process for three years so we were kind of stuck in the middle of nowhere land up until this year. One of the requirements for the Caregiver Program is a medical discharge date or estimated date. I didn't have that, so I couldn't even fill out the application online.

After speaking to the OIF/OEF director, the best solution for us was to simply call and ask the Caregiver Program Coordinator/Director herself. We had otherwise fit the bill for requirements so to speak, and she felt like we really needed to pursue this. This proved to be the best way to get not only the information, but the correct information and believe it or not, I haven't had one single complaint at all about this program so far except that it leaves out many others like our Gulf War and Vietnam families. Now for those of you who are wondering like this question that came in "What the hell is the VA Caregiver Program?"

The Caregiver program, (the fancier name as it was created, the Caregivers and Veterans Omnibus Health Services Act) was created and signed in as a program that was ready for applications starting May 9th of this year. It is designed to help provide respite care, counseling, training, insurance for spouses (more on this here in a second) and a monthly stipend for those (person who is considered primary care giver to the veteran) who care for wounded veterans that require assistance in daily activities. This program is very monumental and one that was fought and pushed for by many. Currently, this program is only for those suffering from severe physical and psychological wounds that were sustained in the Iraq and Afghanistan wars that requires them to need assistance. I don't honestly know if the respite care coverage is the same for all, but for us it was 30 days per year I can use should I need it. If you do not have insurance for health coverage, you can qualify as a caregiver for Champ VA. This does not mean you can stop using your health coverage if you have it. Only if you don't have one in place and need insurance. The monthly stipend is based on the level of care, how many hours is determined by the tier that you fell in and the pay based on that particular tier.

Once the application was filled out, I mailed it in and it took about two weeks before it came back to our Coordinator. I was rather impressed with our Coordinator here. She stayed in constant touch with us through the whole process, let me know when she got our application after it was processed and kept us in the loop on the next steps. Those next steps included having a physician, registered nurse or mental health doctor filling out the portion that states the Veteran needs assistance for daily living. We really don't see much of our PCM so was worried, but my husband's psychiatrist knew of our situation, how bad he was and filled it out for us. Before I knew it, we were pre-approved and on our way to expecting the online training from Easter Seals who created the online and workbook training program.

Now to answer many of the questions of who qualifies, its for those who need assistance for daily living and can be for those with mental disabilities such as PTSD and TBI, for those with physical disabilities OR a combination of both. Just remember, this is for those who must have help in order to get through the daily chores of just living. I had some questions that went along the lines of using this to quit their jobs and stay home, although their Veterans were working still full time and needed no care. This program isn't for that. If your Veteran is able to tend to himself, is working and needs no help, this program isn't for you to be able to quit your job and stay home. Not trying to be rude or nasty, just being bluntly honest and let you know you will be turned down. Now there are some who are in Vocational Rehab, needing assistance at home etc in which you might be able to qualify for. Just because some of them work, there are many out there who need assistance at work, at home and basically everywhere. I can't answer who is and who isn't, you just have to contact your VA's Coordinator and ask. It's as simple as that.

Many spouses are not applying because they are unsure if they qualify. Much of the time, we don't stop to look at how much we assist our veterans in daily living. Stop and look at how much you do, and how much they do on their own. You will be asked a series of questions, so this is a prime opportunity to be honest. Familyofvet.com has a fantastic breakdown of the whole process and the answers to some questions on the Caregiver program. This is a great web source for those who are confused, unsure, scared or wondering how the process works. Once you apply, they receive your application...your start date begins the day they get that application. So for us, I filled out the application and it was received three days later on August 19th. My first check will be on November 1st, which includes back payment from the August date.

The only issue I had was I chose to do my training online rather than doing the workbook. I find it easier to get out of bed early in the wee hours and completed it with just a couple of hours. It doesn't take that long, but do try to pay attention and not guess on the answers. In our case, the Coordinator Director did our home visit with the nurse and asked me some of the questions on the training. So just don't breeze through it and not really know the answers because it might just come back and catch you. The problem I had with the training provided was there was only one small section that had anything to do with those of us who are dealing with the more severe Post Traumatic Stress and TBI Veterans. A bulk of it is medicine related, infections, bed sores, home safety etc. While I found that it was rather easy to navigate, easy to complete and was probably very useful for those with physical wounds...it kind of left us Caregivers who are full time that are dealing with the psychological wounds of war out. I think I was looking for a bit more in this training such as preparing a safety plan, what to do when they become belligerent and nasty, what to do if they are in a severe flashback. However, I have to look at it this way. Each of our Veterans are different, so even if there had been a solution, that solution might not work for all of us.

So out of all the questions, the dreaded Home Visit seems to be scaring many of you. I have to tell you, this weighed on my mind heavily. Will I be judged? Will my home be clean enough? Do I have everything spic and span? What will they say about the toys in the floor of my child's bedroom? The list and fear kept building up. Let me tell you, I cleaned as if there was no tomorrow. If you came into my home and ran a cotton swab across my floor the only thing you would have found was cleaning products! I organized, I scrubbed, I moved things, I scoured to the point I barely made it through the home visit because I was so sore. I threatened my children with boot camp if they dropped food or drinks on my newly scrubbed and polished kitchen floor, and threatened if they dumped toys all over the place! I had medications nicely organized, laid out in particular fashion and made sure my food pantry and cabinets were those of someone who had severe obsessive compulsive disorder. Readers, I cleaned things with toothbrushes and in places that a normal human being wouldn't even look at, but let's be honest with ourselves. This is the VA we are talking about. We have been raked over the coals so badly, I was so afraid that one little place would cause me to fail our home inspection. It was silly, I knew I was overreacting but still couldn't help feel we were being placed under a microscope. I know that our VA probably doesn't like me that much, and that's ok. I just didn't want them to come into my home and say "Lord, not only is she a pain in the ass but her house is dirty too!"

They didn't even look at any of it. Not anything. They came straight in, made a comment my house smelled really nice, introduced themselves to my husband and sat down in the living room. That was it. There were some questions after they took my husband's blood pressure and weight, like "Do you have smoke alarms and are they working?, A safety plan for emergencies and fire evacuation?" etc. I was so disappointed! Now my house is usually clean and neat, but sometimes slightly cluttered especially since we have been working on paperwork and records for the Med Board. They would ask me a question, and I was willing them mentally to PLEASE go check. I think one of them asked me where the bedroom was located and I said its down the hall and to the right, you want to go see? Hahaha! After all was said and done, they left. We both kind of sighed a sigh of relief, but was like "Is that is?". All that worry, all that cleaning, and all that time spent worrying about the what ifs was pointless. Yet, my house was clean and things had been done that needed to be done for a while now so it was just a good excuse.

I think the purpose of the Home Visit is just to ensure that the home is safe, is a clean environment, has the required safety items like railings on stairs, handles in the bathrooms etc which are all very important. If you need those things, they will help you get those in place. Also, they want to make sure that the Veteran is well taken care of and you aren't abusing, mistreating or letting them live in squalor. Now to speak for our Veterans, these visits can be a little challenging. My husband doesn't really like people he doesn't know in our home. He was very nervous, pissed off, and if looks could kill? They would have had to bury these people twice. His paranoia was evident that day and he was extremely agitated they were here. The other downside of this program, is they will come back every three months to check in. That is mostly just to be sure there aren't any changes, things that are needed, and of course to be sure that the Caregiver is still taking care of them and they don't have them duct taped to some wall down in the basement. (That's a joke people). The thing that bothered my husband the most is that he didn't know these people, the nurse that was required to be here will be a different one every three months. I have to admit....I really didn't like that either. I think for all of us Caregivers, that can be a little nerve wracking because you will see someone different each time and you don't know who they are. For Veterans suffering paranoia on high levels, this can be a bit challenging.

Overall though, I promise you it's not that bad. Most of us who have applied will tell you the same thing. Some have bad stories, some are good. I think it just depends on who is the Caregiver Coordinator and fortunately for us, we seem to have a pretty good one who cares and seems to take her job seriously. It's worth all the paperwork, the wait, the training and the home visits. The issue we are facing right now, is not many people are applying. This is a good program with a lot of beneficial things involved, and if we don't get people to apply....I am afraid the government will come back and say "well, obviously there isn't a need for this and we should cut the program or funding". We don't want that! If you care for your veteran, no matter who you are....I encourage all of you to apply. For those of us Reserve and National Guard programs, and have a DD-214....see if they will accept that as your discharge date because they can use that as these are totally different entities than that of Active Duty components, if their injuries happened during active duty time served.

Check out Familyofavet.com , there is great information and links for you to look at. Another one is listed here. I have been there and done that with the VA, trust me. I know its scary, I know they can be one of our biggest obstacles when it comes to our Veterans, but I think they might have just gotten this one right. I feel I did better with dealing directly with our Caregiver Coordinator than wasting my time with the 1-800 number but you might find it differently. The National Caregiver Support Line at 1-855-260-3274. You can find the application here and more information. Stop a few minutes and look over it. Talk with your VA Caregiver Coordinator (ask through the operator or your OIF/OEF clinic) and just see if its something that can help you. I think out of all of it, I know that I can call our Coordinator and just talk. If I need counseling, I feel I can get it. Although I know I contribute to our home, work my butt off seven days a week, I feel that with the stipend I am financially contributing and that makes me feel good. For those that say well, I might only be on the lower tier...well, my thoughts are that is one level up from nothing, which is where you are right now.

Hope this helps relieve some of the worries, the stress and confusion about the program. The worst thing that can happen is you apply and they say no, so you haven't lost anything by just making the call. It took a lot of pushing, work and lobbying for this program to go into place. Let's thank those who made this possible by applying for it and utilizing it. Hopefully, in the next couple of years this program will be available to our Gulf War Veteran families as I know they are working on it.

As Always,