VA Appeal Update

If you’re not familiar with our story, you can read it here.

He never claimed PTSD. His VA doctor diagnosed him with it and has been treating him for it over the last seven years, or so. I can’t remember the exact date, but that’s about right. It took him a while to decide to file for PTSD and when he finally did, the claim took 2 years and came back denied, with the caveat that there were some signs of depression. His VSO told him that if the VA found signs of depression that they had a legal obligation to open a claim for the veteran in his name. They never did.

So, in 2009 we appealed this decision. His VSO sited the official legal statute and sent off the Notice of Disagreement. We’ve been in the appeals process since.

We had a hearing in October 2012 which led to an immediate and undisputed raise in his migraine percentage. The only thing we had to go through was the PTSD interrogation, which was horrible…for both of us. It was my first time learning a lot of what he had been keeping inside. I’m sure I don’t know it all.

To sit there and watch my hero break down like that killed me inside. I didn’t realize just how deep. I am going to have to say that over that next year I must have buried it and let it simmer until it erupted through my subconscious. That’s the reason for this blog, really.  

So, after waiting over a year, calling for a status every 3 months, we finally got movement. A few weeks ago, TheHubs had another C&P Exam for his appeal. We had to drive an hour an a half. We both were a nervous wreck. But I was there for him, right by his side, giving him the support and love he needed. Unfortunately, they refused to allow me in his meeting. 

He was in there all of maybe seven minutes.

What? Seriously? Seven minutes? That was definitely not a good sign. And sure enough, when he returned to me, he was shaking, he was angry, and then he broke down. I held him and said everything’s going to be ok. But he told me she didn’t want to hear anything he had to say. When he finally calmed down, he told me all that happened.

1. She asked him what medication he was taking. He rattled off the list. She said, “well, seems like your memory works.” Yeah, when you have been taking the medication for the last 7 years, you kinda remember. It’s the remembering to take the meds, how much he’s taken during the day that he has issues with. We have a white board we use that he ticks off the number of pills for each medication and when he reaches his max, he can’t take any more. I’m not there all the time to help, so this trick is what he uses. And even that doesn’t always help because he forgets to tick it off sometimes. There’s so much more to his memory issues than just remembering what medication he takes. If I had been in there, I could have offered so many more examples. She dismissed his memory issues right after her statement.
2. She asked him about his nightmares. But wouldn’t allow him to go into detail. She immediately dismissed them as “Everyone has nightmares. It’s your brain’s way of dealing with all the gobbledygook.” And yes, she said gobbledygook. Like it was a medical term. WTF? Again, had I been in there, I could have explained to her what it’s like to wake up to your husband running in place in bed, flailing his arms, then when I reach over to touch him to wake him up, he gets up and runs out of bed smack into a wall, clawing the wall, cowering in the corner, trembling. Yeah, I’m sure that’s gobbledygook.
3. She wouldn’t listen to anything he had to say about the “incident” and just brushed it off as “It’s in your records.”
4. She told him something that should never have been told to a veteran about his past therapist – Why he left the service of the VA. I won’t go into detail here, but let’s just say it was horrible what happened to him. But we found out later that she was not authorized to say anything about it.
5. She ushered him out in record time saying she has his records to review and she will read it all in there.

Seriously, WTFOver?! This was a complete waste of time, just like he said. Their typical blow off or you’re faking attitude we always seem to encounter with our VA. I guess if it’s an invisible wound, you don’t deserve anything. I hate the fighting we have to do. I hate seeing other people skate through the VA system, get 100% disability and then go out and work and have fun. How is that even possible?? But here we are, my husband cannot work because of the pain and the randomness of his migraine attacks, his inability to concentrate and remember anything, and so much more, yet we have to fight tooth and nail only to have people like this lady hold his future in her hands and crush any shred hope we have left.

And what is worse, a week later we get a phone call from his psychiatrist. He’s pissed. He had read the C&P lady’s report and it said he had “no record of treatment or medication for depression.” Um, hello… See #4 up there? She knew he was being seen by a therapist! But still she reported no evidence of such. His psychiatrist said he was in the process of writing a rebuttal to her report, pulling from his records specific dates seen by doctors as well as the medications prescribed. Oh was his psychiatrist angry. And come to find out, he said the lady who ran the C&P interview wasn’t even a licensed psychologist.

I don’t know what all this means. Do we have to wait for the VA’s decision letter to arrive, the denial AGAIN, before we can bring up his psychiatrist’s rebuttal? Or is that already sent in with the C&P report to the decision board? Oh the stress of all this is just killer. I don’t want another denial. I don’t want to have to go through all this heartache of seeing my love break down and have the VA berate him and essentially call him a liar. I don’t want to see that very thin thread of hope snap and vanish and have him just give up. We’ve been fighting tooth and nail with them for 11 years. Frustration, anger, hopelessness doesn’t even begin to cover the turmoil we suffer. If only we could catch a break.

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Our Story

Guilt

I was born, baptized, and raise Catholic. Guilt is a given.

From the moment I was born I had already sinned. It’s not my fault. I didn’t do it by choice. I was being punished for something that happened so many generations ago, for Adam and Eve’s mistake. Then I was taught the Ten Commandments, the six commandments of the Church, and a whole slew of other do’s and don’ts. If you do this you’re going to Hell. If you don’t do that, you’re going to Hell. I was unworthy.

As I grew up, I visited with many of my extended family members. I saw how some twisted the word of God to suit their needs. I saw the strict adherence to His word and any deviation caused many an argument. Every decision I made in life came under scrutinization. I tried to do everything right, but failed. Fingers pointed. Some even shunned me for my questions, beliefs, and practices. Eventually, discouragement set in, and I steered clear of hard choices.

No wonder I feel like everything I do is wrong. Every choice I made, and continue to make in my life, big or small, is weighed against some measure of guilt.

Everything I did, I did to please. If I could direct the decision making to anyone else, the blame would never fall on me. It could very well be the reason why many of my relationships failed, why I never really “took a chance,” and why I continue to work where I work.

Pleasing everyone is my comfort zone. 

I was young when I married my husband, not very self-confident. I let him make all the decisions. I thought if I let him chose and he didn’t like the outcome, it wouldn’t be my fault. Now, I’m pretty sure this was incredibly hard on him. I also did not like confrontation because that meant I was not pleasing him. (I did this with friends, family, and boy friends alike). Not pleasing meant guilt.

When things went wrong, or my husband was mad at something, in my mind, it was my fault. Because I couldn’t make things right, it was my fault. Because it happened in the first place, whatever it was, it was my fault. I took all the responsibility of everything in my loved ones lives, be it in my control or not, all on myself. And because I couldn’t fix things, I failed. Failing meant guilt.

Over the years, my husband built me up. My self-confidence grew. He was my rock, my strength, and he gave me the courage to stand up for myself. But, there were still certain things I just couldn’t do. I still wanted to please everyone. And when that didn’t happen, my guilt flowed free.

Telling my husband “no” was THE hardest thing to do. So I didn’t. It got us into a lot of trouble, financially. So much debt with absolutely nothing to show for it. Before he was diagnosed, I just thought he didn’t understand financial responsibility. When we first got married, he deployed to Korea for several months and I was responsible for paying all the bills. When he came home, he just let me continue. It was easier to have one person in charge of the money, especially since he was always working incredibly long hours, in the field, or deployed. After he was diagnosed, though, I still find fault in how I handled it but I know it’s not entirely my fault. If I had shown him what he was doing to our finances earlier, maybe he would have sought help before we got too deep. Maybe if I said no more often, we would not be in this predicament.

See, that…I still find the guilt.

We’ve managed to pay off most of that debt. It took many, many years. And now that he’s been diagnosed and receiving treatment, we now know the reasons why it happened and are learning to recognize the signs before they get out of hand. I’m very thankful for this, that he’s learning to control it, that he’s willing. Sure there are days he slips, but now, instead of me clamming up and just dealing with the issue inside, we talk about it. I’m still afraid to tell him no; but he’s helping me talk about it, helping me learn to say it. And I’m learning to let go of the guilt…a little.

But finances were only a small portion of my guilt.

Everyone was right. I was always wrong.  If I was a better daughter. If I was a better friend. If I was a better wife. If I was a better mother. If I was a better listener. If I was smarter. If I had more time. If I hadn’t said that. If I hadn’t done that.  If I hadn’t burned dinner. If I hadn’t moved his keys. If I cleaned more often. If only I left his stuff alone. If I tried harder to wake him up. If I had only let him sleep longer. If. If. If. If I had done everything right, none of “this” would have happened.

If I was perfect.

But I’m not. No one can be perfect. I am learning to accept this. It’s a constant struggle. I do believe my husband’s treatment is also helping me, though. Because he’s opening up to me, because we are communicating better than we ever have over the last twenty-four years, I’m learning to realize I am not Super Woman, no matter how much I want to be. I cannot please everyone. And just because I did something wrong, doesn’t mean that I am a failure. Failing only happens when we don’t learn from our mistakes.

Those times when my husband is angry, it’s not always my fault. I have to take a step back and breathe, let him process his anger. Patience is so not my virtue, but I am learning. Eventually, he will talk and we can work through it together. It’s the waiting that’s killer now. Guilt still floats around in my brain; but I’ve learned to look at it from a different perspective. I have to assess the situation. Is it a result of something I did or said, or was he just having one of those types of days.

There are those times when anger takes over as well. Anger at the situation. Angry at his pain. Angry at his medication and how it makes him look and feel. Angry that he’s not helping. Angry that we don’t have a life. Angry that I have to do it all. It’s not pretty and I feel guilty for those thoughts that run through my head. I understand it’s not his fault. It’s not my fault. It just is. But I still get angry and those awful thoughts that you just can’t help always make me feel guilty. Like I’m a bad person. That it’s my fault for everything. And the cycle of guilt continues.

Now I think back at how guilty I felt, how I always took the blame, and everything was my fault and I can see exactly how selfish that sounds. It’s not always about me. It’s not always something I’ve done or said. It just is. We will get through this. There are better times to come. These are the thoughts I use against the guilt that rises up. It’s not me and he just needs to process it so he doesn’t say or do something he will regret.

These are the feelings of guilt that I’ve had some level of success keeping at bay. However, there’s a new level of guilt that I have yet to even begin to overcome. The guilt of taking care of me.

My heart and my head have never played nice. I’ve always struggled with what I KNOW and what I FEEL. I know that in order to be the best possible caregiver, I need to take care of myself first. If I’m not healthy and strong, how can I be able to be 100% there for my husband? My brain knows this.

But…

He worries about me. Dwells on his own guilt feelings for being the way he is and causing our lives to be the way they are. It’s not his fault. I keep telling him. It’s the fault of all those who caused his accidents over the years. So, expressing my pain, my emotional health, my physical health openly to my husband is very difficult. If whatever I say causes more undo worry and guilt for him, I feel guilty for saying it. It’s my fault. I made the situation worse. How can I be the strong one if I’m complaining about my faults.

See, guilt, again. 

I spoke about our lack of friendship, companionship, and understanding in my previous post. I also spoke about how I was persistent in my search for the same. I found an online group which provides an easy outlet for me. But it’s not the same. It’s the lack of physical contact that hurts, but one I’ve been used to for so very long. Now, I’ve also found a local group of ladies, from The Hearts of Valor, dealing with the same issues. I was invited out to dinner one night last month. I so wanted to call and  cancel. I came very, very close. It’s what I do. I was scared about meeting new people. I was guilty for leaving him alone, in pain, while I’m off getting out of the house, meeting new people, having fun. Oh, the guilt of having fun without him, while he’s laid up in bed because of the pain.

Yeah, that guilt. The worst one of all and the hardest to overcome.

Even this blog has caused some feelings of guilt, for saying things out loud, for everyone to read. It’s like saying them has made them real, made them something tangible. I can no longer hide from these feelings. I have to learn how to accept that they are a part of me, that everyone feels them. It’s time to process them and get through the negative in order to experience and cherish the good ones.

Without the hardships, the joys wouldn’t be very joyful. 

Related Articles you may like:
Unworthy
Overwhelmed
Selfish
Anger
Fear
Anxiety, Depression, & Secondary PTSD
Grief – Or Mourning Your Loss
Changing Perspective
You Are Not Alone

If you’ve experienced the same feelings of guilt, you’re not alone. If you have suggestions on how to better overcome this, please feel free to share. I am open to any and all suggestions.  

YOU ARE NOT ALONE!

I’m an introvert by nature. I have very few close friends. I don’t need to surround myself with a lot of friends. I love deeply and am very loyal to those who are my friends. I tend to be the wall flower at large gatherings. I will have an anxiety attack if there are too many people or too much noise, like say the mall. I think before I react. I like quiet and alone time.

But…

There are those times where I *need* the company of someone if only to vent, lean on, or just hang out. The problem has always been that I’m not very good at making friends. Because I’m quiet and the wall flower, because I think before I speak, and because I am deeply emotional, I think strangers view me just plain snobbish. I have actually had friends tell me after they’ve gotten to know me that their first impression was that I was stuck up. This does nothing for my self-image and ability to make friends, for sure.

My husband has always been the friend-maker for us. He was the one who opened conversations and found our niche. But after his accidents, when his pain started to get out of control, it took him away from his life. After getting out of the Army, with his history of pain and medication, calling in sick, leaving work early, all added up to him not being able to  get or keep a job. Not only did the pain force him into isolation, but so did not having a job. Our circle of friends dwindled and when we moved to Florida we had to start all over again. We had no friends here, and continue to have none.

I thought maybe when our son enter school we could meet some new friends. The problem with that, though, is that we started late. We didn’t have our son until we were 33. Now that he’s in school, the parents of children his age are at least 15 years our junior. What could we possibly have in common with them? Add to that, the lack of understanding what military life is like. Or when we do find military, it’s a trigger for his guilt, his anger, and his depression, as well as the loss of his dream.

We tried getting involved with some families at school, we’ve tried getting involved with the Boy Scouts and hoping to find friends in anything we could. But my husband’s pain limited his involvement. Doing anything strenuous triggered his pain. Being outside in the bright sun triggered his migraines. No one understood. And no one wanted to. They looked at him, and me, with disdain. One person even was so bold as to say, rather snottily, “Well, you don’t *look* disabled.” And that cut him so deep and it has yet to heal.

How can I explain to someone that it really is a disability if they can’t see it? How can I explain to someone what we deal with on a daily basis? His impulse control issues, his anger issues, his pain, his medication, his memory issues? How can anyone possibly understand, without being judgmental, what all is involved with the invisible wounds of chronic pain, of PTSD, of TBI? How can anyone understand without living it?

Because none of the other acquaintances ever went further than the social gathering we were involved in, it was hard to express those things. I’m guarded with my troubles to begin with, never wanting to air dirty laundry, start drama, or show weakness. So my explanations were brief. People never pried too deep. They looked at me with pity, never inviting us to do more with them outside the organization we were mutually involved in.

I was alone.

It never really bothered me…much. Sure I missed the friendships we once had. Sure I missed doing things outside the house. But it wasn’t until I had my breakdown, when I really needed someone to talk to, who understood everything I was going through, did I truly feel alone.

My only friends now lived in the computer. They were on Facebook and Twitter. Some were friends I had as a child I met up with through the beauty of the internet. Yes, we were all close….once. But now I felt like a stranger to them. Others were writing friends. If ever I spoke to any of them about the problems I had living my life, many of them would think my husband was a horrible person, that I should have left him a long time ago. They only could not understand, would not understand, everything that goes along with each diagnosis. Heck, we didn’t understand it and we were living it.

I couldn’t go to my best friend, the one person who’s always been my strength for the last 24 years, my husband. I couldn’t show him just how weak I was because *I* had to be *his* strength. If I couldn’t be strong for him, I couldn’t hold the family together, to keep him from giving up. So I kept it all inside.

The problem is that there’s only so much one person can take. Everyone has their breaking point. And I had mine about 4 months ago. I fell into a deep dark abyss. Panic/anxiety attacks were a constant occurrence. The insomnia started. And when I could get to sleep, the bad dreams visited. I had no energy for anything. My creativity faltered. My novel has been on hold since. I dreaded going to work. I hated lifting a finger to make the house presentable. All I did was lay on the couch and stare at the TV.

The worst part was, I was alone in my own house. My son is obsessed with Minecraft and Terraria so he spent most of his Christmas vacation on the computer. My husband, his sleep schedule did a complete 180. He was up all night, and slept most of the day. When he was awake when we were awake, he was upstairs playing with our son on Terraria or Minecraft. I was left downstairs…alone.

Over the Christmas holiday, I managed to get sick. It must have been something I ate, food poisoning. I couldn’t go far from the bathroom as I was going every 20 minutes. But when I told my husband it was bad, it must not have registered with him. Or, maybe, I just didn’t stress it enough, or explain it well enough for him to comprehend. It wasn’t until 2 days later that we finally went to the urgent care and got some medicine. But the whole time I was sick, they both stayed upstairs playing on their games, leaving me alone…

It was disappointing that no one took care of me when I was sick. I was angry. I was sad. I also felt a little selfish. Maybe I was just unworthy of anyone caring for me.

But most of all I felt so alone.

I made a point to go searching for caregiver groups. Maybe someone, somewhere, would understand. But everything I ever found was caregiver groups for aging parents, dementia, and Alzheimer’s. I still couldn’t find a caregiver support group for someone taking care of a veteran, who wasn’t in their 60s, who could empathize and understand my position.

It wasn’t until a long-time friend mentioned Secondary PTSD to me, said I should research it. I didn’t even know there was a real thing. But there is. I wanted to know if the VA could help *me* since I’m dealing with my husband and his PTSD diagnosis and I had been spiraling out of control, falling down a deep dark pit of despair myself, all because I was overwhelmed with dealing with everything and feeling hopeless to change it.

I searched again for caregiver support, but tacked on the words “veteran” and “military”. This time, though, I found a lot of things dealing with this only it was specifically designed for veterans suffering from TBI and PTSD from Operation Iraqi Freedom and Operation Enduring Freedom. How frustrating that these groups were so segregated. Or so I thought.

Eventually I found out that the VA has a new program called the VA Caregiver Support Program. And that’s when everything exploded. Well, not quite. I first had to get over my fear or new people, my fear of looking weak, my feelings of selfishness because there’s so many people out there that are so much worse off than we are, and the feelings that I just wouldn’t belong because it was only for those people who were a part of OIF/OEF.

It took me two weeks to get up enough nerve to call the VA Caregiver Support Program. But when I did, I found out that there are things I could participate in because my husband was a veteran and I was his caregiver. There are still some things that I am on the fence about, like applying for the stipend. But that may come later. But I signed up for an online group, as well as an in-person workshop the VA had. Now, if only I didn’t chicken out about the in-person one.

I knew I needed help. I also felt like I couldn’t let people see me at my weakest. So I struggled daily, inducing many anxiety attacks, trying to convince myself I *had* to go to this workshop. And I’m so very glad I did.

I met some lovely women who were going through some very similar things. It opened my eyes to see that their veteran exhibited the same symptoms. I was so very relieved that I found out I really wasn’t alone, that people *did* understand.

The door had been opened. My spirit started to lift and I could finally see a glimmer of light off in the distance. Because I was persistent in my quest to find something that could relate to me, I did. Because I forced myself to reach out, to contact someone who might be able to help, they could. Because I forced myself to overcome my anxiety and go to that workshop, I found others in similar situations. Because of that workshop, I found websites, forums, Facebook groups, all who understood. They became a places I could go and talk about my husband’s issues and my own trenches. No one judges. Everyone understands.

I AM NOT ALONE!

I am no longer alone. And you are not, either. If ever you feel that way, need someone to listen, please don’t hesitate to contact me. I’m here and very willing to share my shoulder and my experiences with you.

You are not alone, either. If ever you feel that way, need an ear or a shoulder, please don’t hesitate to contact me. I am very willing to listen, without judging, offer you my support and share with you my experiences.

Anger

I don’t like feeling angry. Usually, if something makes me mad I’m usually able to brush it off very quickly. However, as I’ve written about my feelings of unworthiness, selfishness, and how everything has been overwhelming for me, I’ve managed to work myself into a fit of anger.

It starts out small and kind of sneaks up on me. I don’t realize I’m angry until it’s too late, when I snap at everyone for every little thing. And then, that makes me all the more angry.

What am I angry about? Nothing, Everything. None of it. All of it.

I shouldn’t be angry. There’s nothing I can do about it. And that makes me angry.

I want the pain to go away. I hate it. It’s stolen everything from him. His career. His livelihood. His health. His fatherhood. His desires. His dreams. His self-image. His happiness. His life.

It’s stolen our lives. Holidays, family outings, even regular old chores around the house. I get angry that it’s always up to me to do everything. I get angry that no I have to work. I have to do the chores. Where was the man I married? Why can’t I have a normal life? We can’t even plan a real vacation. Overnight trips are the worst for him. When we do try, it’s like we’re always expecting the pain and anxiety to take him away and cut our outing short. We never go anywhere that is more than an overnight stay.

I get angry that he’s lost all his excitement, his desires. He doesn’t want to do anything anymore. He feels helpless, a burden, and he fears failure so he doesn’t do anything. I know he wants to. But his pain and fear bind him. When I try to find something I know he’d be good at, or I think should excite him, or something that maybe he wouldn’t feel so useless, he pushes back. And I get angry.

But the anger isn’t just mine. It’s his, too.

Before we knew what was going on he was prone to angry outbursts for no reason. And boy could he get angry. Rage was more like it. It scared me.

I, being the non confrontational kind, sat there and said nothing, fearing that if I did I would trigger even more anger. Also, being the person I am, I thought it was always my fault and I didn’t want to make it worse. So I sat in silence waiting for it to pass. Some days he would be fine. But on those days when the wind blew wrong, I held my breath and walked on eggshells.

Years have gone by, I stuck through it. I always held hope that things would get better. While his condition worsened, I still loved him. We found out a lot of things over the years, learned to talk to each other. It wasn’t until he was diagnosed with PTSD that we really understood a lot of it. The chronic pain and the medications didn’t help either. And now, I’m learning that there may be more to it than we realized. After going back through the memories, talking more in-depth about all the accidents he’s had, and me researching, we now think maybe he has been suffering from undiagnosed traumatic brain injury (TBI) all these years (which he is currently undergoing testing–not sure how that will play out since his accident was 15 years ago).

The most important thing, though, is that I am there by his side, through sickness and in health. I give him my support. We learned to communicate, not just talk or yell. We continue to learn how to identify our feelings and reassure each other that it isn’t the other’s fault.

Yes, of course we still get angry. We all do. We are not perfect. But it’s not terminal.

Shakespeare said, “Do not plunge thyself too far in anger, lest thou hasten thy trial.” (All’s Well That Ends Well, Act 2 Scene 3) Anger never creates anything. It is the destroyer of everything that is good. Take a deep breath, count to ten (or a hundred), eat a cookie. Tomorrow is another day.

Related Articles you may like:
Unworthy
Overwhelmed
Selfish
Guilt
Fear
Anxiety, Depression, & Secondary PTSD
Grief – Or Mourning Your Loss
Changing Perspective
You Are Not Alone