Monthly Archives: January 2014

Overwhelmed

Sometimes I can handle everything that’s thrown at me. Sometimes, though, it gets too much. It ebbs and flows. This last year seems to have been the hardest, for all of us, so far. I really hope this is the hardest. I hope I can learn how to cope better and release the pressure valve so I don’t have another nervous breakdown like I did the last 3 months of last year.

Here’s an example of my daily schedule, Monday through Friday consists of the following: 5am Wake up and get ready for work
7am – 3pm Work
4-7pm begin dinner preparation, eat dinner, help TheBoy with homework until he’s done (not only does he have regular school work, but he’s enrolled in upper level online learning through the school)
7 or 8pm try to relax and get some TV time in, or reading. Shower.
9pm bedtime (most of the time, I wake up every hour…getting a very unrestful sleep)

Weekends I still get up early. I can’t seem to sleep past 6am anymore. I try to catch up on household chores. I can’t really run the vacuum when he sleeps. So that goes weeks in between most times. He won’t let me run the lawn mower. He thinks it’s his job. But in reality, he has to pre-medicate. He has severe photophobia which triggers migraines as well. So yard work wipes him out when he does. Going grocery shopping, which I hate, is reserved for the weekends as well. I try to catch up on my TV shows but sometimes that’s not even possible. There are so many things I want to do but can’t.

That’s just the physical toll. I also deal with all emotional challenges. I think the emotional stress is more taxing than the physical demands. I feel more drained after a day on the emotional roller coaster.

I try not to worry about the pain my husband is in. I try not to worry that there’s nothing I can do. I try not to worry that he’s going to give up his fight. I try not to worry. I was overwhelmed. So many negative emotions boiled inside, tossing and turning until it buried me so deep no light, no hope, could shine through.

My sleep patterns were greatly affected, which made my day go all wonky. I started listening to all those negative voices in my head, the ones that said I was unworthy, that our lives would never be any better, that this is how it will always be: stuck in the house, alone, no friends, no hope, always in pain. I started having panic/anxiety attacks, even in the middle of the night. I would wake up having trouble getting enough breath. And then, I started having my own nightmares.

I dreaded the next day, and the next. I dreaded going to sleep. I dreaded our bleak future. I dreaded dealing with all that comes along with caring for a veteran. I didn’t want to do it anymore. It was too overwhelming.

The things that went through my head were not pretty. I spiraled out of control, into a deep dark abyss that was my own depression. I listened to those voices. They rationalized all the negatives in my life. They started making sense. And they killed all hope. I was so overwhelmed with negativity I couldn’t see any way out.

I broke.

I caved to the overwhelming sense of doom.

I knew what needed to happen. I needed to find a glimmer of hope, a tiny light at the end of the tunnel. But I just couldn’t find it. I was lost, alone.

I tried therapeutic writing. I tried re-reading old journal entries and poems I’ve written.I tried to find a glimmer of positive. Nothing worked this time.

I struck out on my own, determined to find support from women who understood. Every caregiver support group I found, and there were a lot of them, dealt mainly with aging parents with Alzheimer’s or dementia. These people were so much older than me and none could really understand. I felt like an outsider. So, the search continued. I found out about Secondary PTSD and that’s where I found some support through the VA system – The VA Caregiver Support Program. I reached out. I attended a workshop. The emotions flooded through me still; but now, the I had a different kind of overwhelming sensation. An overwhelming sense of belonging. There were other women who are taking care of their veterans. The symptoms were very similar, the emotions the same. I was no longer alone and I wasn’t strange or an outcast.

I’m doing my best to find those little glimmers to get through. When my emotions, my life, gets overwhelming, I’m learning to let go, breathe, and remember that tomorrow’s another day.

LadyJai

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

Selfish

We’re all a little selfish sometimes. But for me, I feel I am *always* this way, with so many things.

See, I’m an only child. I grew up where everything was mine. My parents’ family time was mine. The presents my family bought, all mine. I didn’t have to share with siblings. While my parents tried to teach me to share with others, I still found myself feeling like “I should have got that too” or “Why couldn’t they have given me some?” when I went to friends’ birthday parties and such. But I think that’s all a part of being a child. Maybe.

No, what I am talking about is the selfish thoughts that ramble in my head as an adult. Most are auto-thoughts, as my husband has named them. Those instant thoughts you never can control, never say out loud, and never really act upon…at least that’s the hope. For me, my selfishness seems to stem mostly from my insecure and self-loathing nature. But there are sometimes that those thoughts could easily be a truly selfish. I have trouble distinguishing between the two most of the time. I usually keep them to myself because being selfish makes you lose those people closest to you, right?

But here I’m going to list the times when I feel selfish. I’m saying them out loud, admitting that I think these thoughts. And trying to accept that it’s OK to have these thoughts, everyone has them, and as long as I don’t dwell on them, or act upon them, then I can get through and carry on. And my loved ones won’t leave me.

Some will be irrational. Some may be truly selfish. But here’s my list in no particular order:

I feel selfish …

…remembering when I said I wanted a baby
…remembering when I said that I didn’t want a child while he was in the Army
…remembering when he ETS’ed and the reasons why
…for leaving him at home, alone, when the pain is too great for him to join in the family outings
… if I do something for myself.
… for having fun while doing it
… when I get angry at my husband or my son because I’m really angry at the situation and the pain but I took it out on them
… for asking for help when I need to vent
… when I wish he’d do something, anything, around the house
… when I want someone to take care of me, like I take care of everyone else
… when I think “I wish I was sick, or hurt, just so someone is forced to take care of me”
… when I want someone to think of me, to do something for me, without me having to ask
… for thinking our situation is bad when there are so many people out there in far worse situations
… when I complain about a headache when my husband suffers through chronic daily migraines and pain that never goes away
… when all I want to do is go to sleep and there’s so much stuff that needs to get done
… for wish I was a guy and didn’t have to do all the “girl/wife/mother” things
… for wishing for a normal life
… when I let my husband sleep so late after being up all night, or because he’s in so much pain
… when I give up trying to wake my husband up after he tells me he wants to get up but can’t
… when I want to run away

These are only some of the things I think about. There’s never a day that goes by where I find myself wondering if what I’m thinking is selfish. You’d think that after 24 years I’d have gotten over my insecurities, but no. What I have to do is learn to let it go, not dwell on it, and never act on it.

In my learning process, I’ve come to open up more to my husband about what goes through my head. Not nearly enough, but I’m getting there.

It's not who you are that holds you back, it's who you think you are....or not...

It’s not who you are that holds you back,
it’s who you think you are….or are not…

I am not a bad person. I am not selfish. I am good. I am loving. And these thoughts are OK to have, just skip over them. I will not dwell on the negative. Focus on the positives.

LadyJai

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

Unworthy

The negative voices inside my head have reared up again. I’ve been listening to them too much lately. They speak about a lot of things, but today I only hear, “You are not worthy.” It is nothing more than the guilt and unworthiness instilled in me from an early age as I grew up in the Catholic environment. I listened to all the teachings of the church, my family, and fellow worshipers. All the passages in The Bible they highlighted focused on sin. From the moment you are born, you are doomed, cursed with Original Sin, and must pay the penance for something out of your control. The guilt piles on from there. Everything you do is evil and you must repent. Do this or you go to Hell. Do that or you go to Hell. Why do they not teach of the love that God has, his forgiving nature, and his desire to help? Why can’t everyone see this? And why am I still feeling so unworthy of everything good in my life? Why do I feel unworthy to ask God’s help?

I’m not good enough.
No one likes me.
I don’t matter.
I don’t live, I just exist, an no one notices.

In the end, I always end up saying…Why bother? What’s the point? Things will never change.

These words cut my heart, my soul. They’ve circled in my mind since I was little. Ebbing and flowing. Sometimes they’re whispers in the wind. Today they scream in my face.

But they lie. If living a military life has taught me anything, it’s taught me that everything changes. It may not be in the next five minutes, an hour, a day, a month, or even a year from now. But it will change.

The problem I can’t seem to get past these last few months is that I know change isn’t always good and I’ve let myself sink into the deep hole of despair. That nothing’s going to get better. This is how my life will be forever. I can’t help my husband get better. I can’t take his pain away. I must not be a good person. Good people get to be happy. We’ve had nothing but struggles.

The hardest thing for anyone feeling unworthy is to hear the words of praise. No. Not hear the words. BELIEVE the words of praise. There’s always that nagging voice at the back of your brain that’s telling you the complete opposite. Telling you that they’re just saying these things to be nice. They don’t really mean it. And when the darkness overtakes you, the light extinguished, you start believing that negative, nagging voice.

Before we knew what was wrong with my husband, when things were really bad, I would berate myself. Everything was my fault. His moods were so unstable. But it was always my fault. At least in my eyes. We’ve learned over the years, with the help of the VA, how to communicate. It’s slow going. I still have episodes of self-loathing and guilt that I’m the cause of everything, anxiety about confrontation.

It’s been 15 years since the accident and his pain progressively gets worse. At least the emotional issues have been identified and we are working to make this aspect better. It has gotten better, though not 100%. But better. And I’ll take that.

There’s been things that have come out this last year that must have been eating away at me because I fell into the darkness, deeper than I ever had before. Every time I ever went looking for caregiver support, all I ever found was mostly people taking care of elderly Alzheimer and/or dementia patients. Or I would find support groups for families who’s soldiers have lost limbs. It’s the invisible wounds that are the hardest to understand. No one could possibly empathize what I’ve been dealing with all these years. No one lived my situation. Our lives were unique. I’ve been searching and searching for a support group that understood, but using all the wrong search words. When nothing surfaced, I knew I was alone.

How can I be the strength my husband needs if I cannot be strong for myself?

I didn’t give up my search. I knew something was wrong with me. The constant crying, the belittling of myself, the negative. I knew I needed some help to bring me out of the pit. I didn’t want to be like this. It’s too dark. So I searched again.

This time, though, I found the VA Caregiver Support Program. One little flicker of light that guided me up. I felt unworthy of asking for this program’s help because there are so many more veterans and their families that are worse off than we are. How can our lives compare to those who’ve lost limbs, or burned, or gave the ultimate sacrifice? Our problems could never compare to that. Why should I complain? I was unworthy.

It took a lot to make that first call. I cried. She listened. Then, she offered me several options. I signed up for one of their workshops. I was so afraid I’d do the same thing I always do and chicken out and not go. (The guilt I felt for leaving my husband all day was overpowering.) I made myself go. And I’m so glad I did. I cried some more, but there was a little difference in those tears, a glimmer of understanding.

I was not alone in how I felt. Though the situations may be different, the behaviors, the feelings, are so very similar. This class opened the doors for me to find more people I could connect with, that would understand me.

ItWillHurt

I am not alone.

“You are not alone!” I have to keep telling myself that for fear I will start listening to the negative voice at the back of my head again. There is always going to be a part of me that doubts my abilities, my worthiness, my strength. I just pray for strength to shush that negative voice so I can continue to be my husband’s strength, caregiver, and soul mate.

I am worthy.

LadyJai

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

Our Story. An Open Letter to Congress About the VA Appeals Process.

Dear Congress,

I’d like to tell you a story about a little boy who, at five years old, snuck off away from his home to watch the men in uniform go about their duty on a reserve installation. He was gone for hours and when he returned home got in a heap of trouble. But what happened in those few hours transformed that little boy. A spark ignited a flame and that flame burned for years illuminating his dream to become a soldier, a hero. It’s all he ever wanted since that moment oh so long ago.

That little boy grew up and joined the Army, living his dream. He never really thought he’d make it past his twenty-first birthday. Always thought he would deploy somewhere and give the ultimate sacrifice. And he was prepared. He accepted that fate, his duty, and welcomed it. He would die a hero.

Then, not long after he enlisted, he met a girl. They talked all night, like old friends catching up on their time apart. Within five days, he asked her to marry him. She, of course, said yes. And they married a month later. He finally realized he would live longer than he had ever envisioned. And wanted to. Soul mates from that first night and they have shared so much over their twenty-four years together.

Over the years, that boy suffered through ungrateful superiors, bad assignments, several accidents, and seeing horrible things while deployed. Not only had his dream been shattered —  because the Army wasn’t supposed to be so corrupt, right? – but his body also. By the time he was assigned to the best unit he ever had been a part of (1/7th Cavalry Ft. Hood) his morale and body had been broken beyond repair. From that first accident, and the lack of proper treatment, that boy’s pain has progressively worsened over the years. He suffered debilitating migraines and it wasn’t until he found a doctor at Ft. Hood that actually diagnosed him that he was able to get some relief. The problem is, though, it was too late. The damage was done so many years before, exacerbated by a few other incidents along his career that the chronic pain had set in. With every failed treatment the hope he would ever get better ripped away a part of him, leaving him torn in pieces.

At twelve years, he was ready to re-enlist and his doctor told him that if he did, he would have to kick him out on a medical. No one informed him that this should have been his option, that it was not a negative mark on his service record. No one informed him; everyone led him to believe it was an “other than honorable discharge.” The little boy who dreamt of being a soldier until the day he died, had been crushed. His pride took over and rather than receiving the bad marks, he let his enlistment lapse and ETS’ed with an honorable discharge. He was left to his own vices, his own wits, to file for his VA. There was no one who offered any help and he did it all on his own.

It was fine, at first, because he was going through the VA claims process in Waco, Texas. He had his medical review and the doctor there said he was going to recommend 70% right off the bat. However, with a new baby and his wife the only source of income, her contract job now threatened, life turned upside down. Luckily, though, she secured a new position; but it meant moving to Florida. This also meant the claim would have to be transferred and ruled on from the regional VA claims office in Florida. That first ruling put him at only 10%.

He filed an appeal. He was seeing both VA and civilian doctors for his chronic neck pain and migraines. We had much documentation. After a few years, the appeal came back and they gave him 30%.

He tried to work. But the pain, the migraines, and the medications he took, made him unreliable and most employers wouldn’t give him a second glance when they found out about it all. He eventually came to the conclusion that it was best to just stay home and raise our son, which really wasn’t an easy task as the years went by.

He went from doctor to doctor, medication to medication. You name it, he tried it. He’s been on a number of different daily regimes of medications to help “prevent” the migraines. He’s had a variety of medications to choose from when the migraines come. We even paid for chiropractic and acupuncture treatment, in hopes that would help. Nothing has completely alleviated the pain. Very few treatments have subsided the pain enough so he can semi-function in his daily routine. Most of them are so harsh that they leave him incapable of doing anything. He’s tired. He can’t sleep. He’s run down. He’s depressed. And he’s come to the conclusion that this is going to be this way for the rest of his life.

Now, his migraines come 4-5 times a week, sometimes every day. His neck is in constant pain, which makes him tense up, causing tension headaches, triggering migraines, causing him more tension, torquing his neck, causing tension, causing headaches. A vicious, never-ending cycle. He’s suffered through all kinds of treatment options, medication and procedures, both in the civilian world and through the VA but nothing has worked. His migraine medication from the VA is never enough. Nine pills a month. And they won’t give him the other medications for the chronic pain unless he’s at 100%. We have to go to the civilian doctors for those. So our out of pocket costs have skyrocketed. The chronic pain has taken its physical toll. But with the never ending pain, it has seeped into his psyche and is now working on his emotional well-being.

We knew that the chronic pain caused some symptoms of depression but since he came back from Kosovo, they worsened. With the War in Iraq and Afghanistan, many people have forgotten about that little stint. He saw some horrible things over there. He came back more broken than ever. We didn’t know it at the time, but as the years when by, the insomnia and nightmares, his anger, all became so much worse. We never really thought about it, never really connected it, until his VA doctor labeled it: depression and PTSD. And several more medications tacked on to the end of the list.

Because he didn’t deploy to Operation Iraqi Freedom or Operation Enduring Freedom, he was not afforded the same ease of VA care and benefits. He’s had to fight for his benefits every single moment. We are still fighting to get these benefits and still waiting. He sees his VA psychiatrist once every 3 months, and his normal VA Physician’s Assistant once a year. If he needs something done, say an MRI or an Upper GI, he has to wait near nine months to be seen. If it’s something we think is important, we have to go out to the civilian world and pay from our own pocket. He has a Pain Management doctor that he has to see once a month, because of the new laws in Florida, which includes a $45 doctor visit and labs. His medication he receives is also something we have to pay for because the VA will not pay for his narcotics.

He lost his job, his career, his dream. He’s left feeling inadequate, a burden and he thinks he’s ruined his family. His wife now suffers from her own caregiver stress, depression, and hopelessness. His son has isolated himself and refuses to go outside the home and play with neighborhood friends. He feels like it’s all his fault. But in reality, the Army broke him, in more ways than one. His wife has seen the face of pain. His wife has seen him balled up on the floor crying. His wife has  seen him sleep for 36 hours because of the medication he took, seen him through bouts of insomnia. He’s missed so many family holidays, so many family outings, even mowing the lawn and normal household chores he can no longer do without tremendous pain. There isn’t anything he enjoys to do anymore. He cannot enjoy life. But most of all, he cannot enjoy his son. His wife hates seeing how depressed he has become, hates not being able to do anything for him, hates what our lives have become…a daily routine of fighting the pain. But most of all, she hates the pain.

I don’t think he will ever be 100% better and we struggle with the costs of the treatments. But we are doing our best with what we have. Our family is strong. Our will is strong. However, it ebbs and flows. It’s taken its toll on that boy turned veteran. Now it is taking its toll on his family. His wife has become his caregiver, doing everything for him and the family and now she suffers caregiver grief/depression, even secondary PTSD possibly. Their son has become a recluse, not wanting to leave the house or do anything social. The toll is great for all veterans and their families.

His last appeal entered the system since 2009. We’ve been waiting so very long. He calls every three months for the status, just so they know he hasn’t given up. Each time they tell him, it’s still processing. The VA is working to relieve the backlog of the new claims, which seems to be working. At least they are boasting about it on their social media and press releases. But what of those people still in the appeals process? We recently got a letter in the mail stating we are currently 1279 out of 21,009 claims in the system and it’s worked in the order it was received. Is there anything that can be done?

I’m writing the story of a real person, his dream, what broke him, and what continues to break his will. He feels that the country, his government, that he would have given his life for without question or hesitation, has pretty much crumpled him up and tossed him in the trash. When stating he’s a disabled veteran to anyone that doesn’t know him and they look at him and say, “You don’t look disabled” in some snide remark, crushes him under the rubble of his soul.

We need more support for our veterans and their families. The hardships they have to go through while active duty cannot compare to the hardships that come after service. It is a new career for the service member, one that many give up. It should not be this hard. They should not have to fight for what they’re due. Yet, here we are, 13 years after he was released from the Army, and we continue our fight. Waiting, hoping, one day for that letter to come and we won’t have to put in another appeal.

The current budget deal takes away benefits from our veterans. Next will undoubtedly be our VA programs. Would you be willing to lay down your life for your country? Your government?

Your medical benefits are far superior to those voluntarily fighting, some dying. Your pay and pensions protected by your votes. It should very well be the other way around. Congress should fall under the same laws, regulations, and benefits that our veterans receive. You are no more a servant to our country as our fighting men and women ever were.

We don’t want a form letter from you. We don’t want promises. We want action. I’m requesting you investigate the VA appeals process, find solutions to speed it up with less hassle and fighting for the veteran. While I understand that the majority of new claims are coming out of Operation Iraqi Freedom and Operation Enduring Freedom, please do not exclude personnel who served in between major conflicts. There are personnel who suffer the same issues but those who deployed to OIF and OEF are automatically considered disabled for certain things, whereas those who were not deployed to those conflicts have to fight tooth and nail to prove their disability.

We need to elect those willing to take care of those people, and their families, who are so willing to protect our freedoms. I would rather that action start sooner, rather than later. We will do everything in our power to vote for someone willing to fight for those of us who sacrificed so much.

Thank you kindly,


She married her hero!