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The Forgotten

My father served in Vietnam in the late 1960s. When he came home, he was spit on and called a baby killer. He was one of too many. Everyone hated him and everyone that put that uniform on. That was a horrible time for our military.

As our country engages more and more across the world, spreading our military might too thin, their overall support dwindles. I watched as everyone wore their American Pride well during the First Gulf war in 1989. But the political landscape capped that quite well – “It’s all about the oil.” Everyone listens to the media.

And then one horrible day that has spread across the world, 9/11 ripped through our lives, everyone’s lives. And our national pride soared once more. For a while, anyway. And then everyone started listening to the media again. The spun any part of “The War on Terror” as a waste of money, Bush’s War, the daily death count. I was confused when the new phrases came out – “Where’s the weapons of Mass destruction?” No one could think that a plane would be a weapon of mass destruction, or bio-weapons. All they cared about was seeing the nukes. Where were the nukes? Unfortunately, we gave them plenty of time to get those out of their country. And when we couldn’t produce a cache of weapons that the media wanted and the fact that we weren’t getting out of there any time soon, the phrase changed to,  “Support our troops, but not the war.” How can you support that which engages in the thing you don’t like? It was a complete conundrum for me that still leaves me scratching my head. Just ugh.

Why do we continue to hate on our military?

According to a report released in March 2016 by the National Center for Veterans Analysis and Statistics, the greatest number of Veterans still comes from the Vietnam Era, closely followed by  peacetime only Veterans and then The First Gulf War. Yet, everyone focuses their attention, and money, on those Post-911 veterans, which only account for 13% of the total number of Veterans in that census.

Thirteen.

And yet, they are the ones who receive the attention, the focus, the help. They are the ones that all the charities gear their marketing efforts towards. In 2014, there were 19.3 million veterans living in the US and PR. Of those 19.3 million veterans, only 3.8 million have been awarded a service connected disability. Other statistics include: 7 million served in Vietnam, 5.5 million served during the Gulf War era (representing service from August 1990 to present), and 2.5 million served in Iraq and Afghanistan.

Now, when I say that 2.5 million served in Iraq and Afghanistan, I’m sure that is an accurate number in the sense that there were 2.5 million people deployed to those areas. However, it is a well-known fact that of those 2.5 million people quite a lot have been on multiple deployments. So, in essence, there aren’t 2.5 million veterans of those two wars. The RAND Association explains it best –  in troop years, rather than number of deployed. At present, I have been unable to locate the exact number of Iraq and Iran Veterans. However, RAND is stating the strength of approximately 554,000 soldiers in December 2011. The VA is reporting that it has seen approximately 860,000 Iraq and Afghanistan veterans utilizing their Health System.

As the US Veteran population ages, the older generation numbers will dwindle. This is only natural. But with our continuing efforts in Iraq and Afghanistan, the number of veterans from these two areas will undoubtedly surpass the Vietnam era.

I am in no way trying to downplay the younger generation of veterans. By no means. What I am trying to point out is that Every Veteran Matters. 

And that’s how ALL these benefits/charities SHOULD be run. But they’re not.

I lived through my husband’s combat deployment. He experienced it. Still experiences it. Every. Horrible. Moment. And how many people remember Kosovo and their atrocities?

Only those who went there in the beginning.

So why is it that only the latest veterans, those post-911 combat veterans, are the only ones to get any benefits, any assistance, anything from anyone?

We are not ones to ask for assistance or help. We are those people who would offer up our help to others, no matter how bad off we were. But this last year has put us in a bind. With my medical insurance premiums and cost going up, the services and prescriptions covered going down, we’ve pretty much wiped out our savings. The VA hasn’t paid for any of the procedures he’s gone through since they stopped working back in 2012 or so. I can’t remember the last time he went. They don’t pay for any of his pain medications. So we are forced, now, to go seek civilian help.

He’s been going to a civilian neurologist since we moved to Florida and he’s been doing Botox injections in his neck and shoulders for his dystonia. For the past two years, all we had to pay for was the doctor visit for this procedure. Now, we have to pay for the Botox and the doctor visit. At $1000 every 3 months, that’s a no go. So he hasn’t had this since October of 2015. His pain is ever-increasing.

I did some digging and found out that now the VA Pain Center can do the Botox injections for him. I also want him to try ketamine infusions, as it’s helped a couple of people with their chronic pain that no pain medications have been able to touch.

In January 2016, I called for a VA neurology consultation so he could possibly be seen for both Botox injections and get a referral for the ketamine infusions. February 3, 2016 was his appointment and the VA neurologist evaluated him and said he’d refer him over to the VA Pain Center where they do the treatments. March rolls by and so does April. OK, we knew we’d have to wait, but I had him call and check anyway. Come to find out, February 4, 2016 another neurologist revoked his referral due to “having a civilian neurologist and received Botox there.”

Um, no! Just no!

So he had to fight to get that referral reinstated and he had his fist consult with the VA Pain Center in May 2016. Despite having previously been seen there, with quite a few procedures that eventually failed, and records to show for it, the evaluating “doctor” decides to “try” a procedure he had, that failed, twice, since he hadn’t been there in several years. He kept trying to say it was “new” when it really was the exact same procedure he’s had there before. We are convinced he was fishing to get TheHubs to say, “no, I don’t want to do that” just so the VA could deny him benefits because he refused a recommended treatment. But TheHubs suffered through this treatment in June 2016, which seems to have made his pain worse. They have scheduled his Botox injections for the end of October 2016 (a full year without Botox, so it’s like starting completely from scratch.) And to top it off, they can only inject HALF of what he was getting in the civilian world. HALF! How the heck is that even going to help when his full dose only took the edge off the pain!?

Not only do we have to deal with all his VA and civilian doctors, TheBoy had to have surgery on both his feet last year. Now he’s in braces, which we are still paying on. And, of course, my medical issues. And last month, our A/C died. At 95 degrees, in Florida, you don’t want your A/C to die. I had just emptied out our savings to pay off all the medical bills and then this happened. Everyone in my support groups were great, giving me places to apply for assistance, in the hopes that someone, somewhere could help me with the payment of a brand new A/C handler and compressor.

That’s when I found just how frustrated and forgotten TheHubs REALLY feels…

Out of about 35 organizations I tried, only 2 were open to all eras. But both of them were out of money. Everywhere else, you had to be a post-911 combat wounded veteran. I was crushed. All the charities I see out there, helping people with all kinds of needs and assistance, and we don’t qualify. Just like the VA Caregiver Program or any of the “automatic benefits” these veterans get without having to fight for their compensation Retreats, discounts, even a day at an amusement park (even *if* he could go with all those people) are not an option for him. Heck, even just a simple tool box for veterans, and we were denied.

Nope, we have to fight tooth and nail for everything he deserves. He has always called it “The Forgotten War.” I understood it. But now, I am seeing it as “The Forgotten Veterans,” too. It breaks my heart. And what about my dad? He had to wait 30 years before the government would even acknowledge the fact that they used Agent Orange. Luckily, now they have automatic diagnosis that fall into the Agent Orange category. But, really, any assistance that my mom might need, like the Caregiver Program, is lost to her as well.

I just can’t believe that we are a NATION OF NOW, a reactionary force to whatever happens to be in your face at the moment. And since the Iraq and Afghanistan wars are still ongoing, because the returning and broken veterans are so young and so plentiful, more people see them, see their wounds, and want to help…them.

I want to know where we can go for ALL era veterans. I want to know why we continue to discriminate and forget about those that came before. I want to know why we can’t recognize and help them too! This is only a small portion that adds to the 22 veterans a day that die by their own hands. I only hope I can keep his hope from fading!

LadyJai

 

 

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Where Did the Magical Season Go?

So, can this day/week/season hurry up and be over with already?

Every year I hide behind my words – <Insert Holiday Title Here> is nothing but a commercialized guilt trip and we should celebrate love, kindness, thankfulness, gratefulness, family, friends, and whatever else, EVERY day.

Yeah, just words. Sort of.

In all honesty, I have always disliked many holidays. I dislike Valentines Day, Mother’s Day, Father’s Day, Grandparents day, Boss’s Day, Administrative Assistance Day, and any other day you can think of. The truth of it all is, it’s a holiday that people adopt so they can party (like St. Patrick’s Day, or Cinco De Mayo), or it’s a day that all the retailers try to lure you in with “savings” to get your money or guilt trip you into buying something for your love or your child and if you don’t, you suck.

And it seems to be worse around Christmas.

My heart and soul must live in a different time period, especially around Christmas time.  The magic of the season is everything to me. You know what I mean. Old movies like HOLIDAY INN or WHITE CHRISTMAS, or the kind you see in a Thomas Kinkade painting, and all the stories of miracles happening around Christmas. A quaint little neighborhood. A blanket of virgin snow. A single trail down the center of the road that leads to the horse-drawn carriage. Christmas lights and decorations lining the streets and warming the houses. Everyone smiling and wishing passersby a Merry Christmas, helping those who needed help, and giving a small gift of friendship in any form. Friends and family circling round the fireplace drinking hot apple cider, singing Christmas carols, and sharing in the warmth of the love. Every time a bell rings, an angel gets its wings.

Oh to see the world through my childhood eyes again.

To set the record straight, It’s not just about the lack of presents. With all due respect, presents under the tree is only a tiny part of that ideal Christmas image in my head. With each passing year, though, the magic of the holiday seasons grows more distant and unattainable. Decorations, still packed away in boxes stored in the garage, are left untouched for years. The lack of cold and snow, does nothing to put me in the mood either. I have no motivation. And when I do, I do it all alone. And now, while the desire is there, that little voice inside my head says, “what’s the point?”

I no longer like going out window shopping, just to enjoy the decorations or looking for ideas for my own house. There are way too many people. It would be ok if everyone was happy it was Christmas time. But now, everyone is so rude, and a thousand times worse during this season. It spurs anxiety in both TheHubs and I.

PTSD and Pain have ruined this time of year for me. TheHubs only feels 3 emotions: rage, despair, and nothing. He doesn’t get into decorating, socializing, or celebrating anymore. This, in turn, makes me not want to put in the effort. Maybe it’s the lack of UV light, the drab days, the lack of color all around, that adds to the depressive state. They do talk a lot about this time of year being worse for depression. So maybe that’s part of it. But I also know that seeing your loved one in constant pain, suffering his demons, and hardly ever seeing the smile on his lips and twinkle in his eye, well, you just let it slip through and wish it were all over so you can get back to the everyday life without seeing everyone else’s Christmas cheer.

This year has been especially hard, making this holiday season a bit worse for wear.  We’ve been through some seriously trying times. Communication is the only way to get through it. And while the PTSD Rage Monster flares bright, I wondered if we’d ever get back to that point. But we did. We both opened up. We both are constantly working on our communication. But while you’re smack in the midst of living the hell, it is hard to see the light. There were several of these times throughout the year. More than we’ve had in a very, very long time.

And then there were all the medical issues.

For me, luckily, this year was pretty simple. Just a few follow-ups with my Psychiatrist and adjustments to my meds–which at this time, I am not going to up them because of the price. It’s like two completely different prescriptions, even though it’s the same medication. One strength dose in the morning, a different one in the evening. But, it’s on a higher tier in the formulary so I have to fork out a bit of money for that. (And don’t even get me started on next year’s medical insurance.)

When TheBoy started school this year, he also started complaining about his feet hurting. It wasn’t until about a week in that it got so bad he called us from the nurses office saying he couldn’t walk anymore. We took him to a podiatrist and that’s when we found out he has incredibly flat feet (like his father) and loose tendons (like his mother). Luckily, the doctor had a quick and permanent fix, giving him an arch and correcting his feet to hopefully not have pain. It would require surgery on both feet. And now was the best time for him to have it since he’s still growing. He’s already had one surgery, and his second is on Dec 8th. (if you want to read about this condition, you can see the pictures here)

And then we found out he needed braces. UGH!

On top of all this, we also have to foot the bill for what the VA doesn’t cover for TheHubs. All his medications, and the neurologist he’s been seeing for a little over 10 years. His Botox injections, and pain medications. He also had surgery in September to help correct his severely deviated septum, which was supposed to help his apnea and we were hoping to alleviate the positional pain that came from sleeping since he would now be able to breath out of his nose while sleeping on his belly. It helped somewhat, but nothing to write home about.

So, our bank account has been pretty much wiped out — of course adding to my already discouragement for this season.

So when TheBoy comes to me, without prompting, and says he would be fine with nothing for his birthday and Christmas, an instant surge of pride is quickly replaced with a great sadness because I know with all these medical and dental bills that are going on I cannot afford to get him something, or anyone else either.

This season is about giving. And I do so love to give, whether it be a present, a smile, a hug, a positive thought. I am happiest when I am giving and helping people. I am happy making others happy. Sometimes, though, I would love if everyone else felt the same way I do.

When I started writing this post, it was so very negative. I couldn’t see the positive, and wondered if I would ever feel any Christmas spirit again. After getting it out, admitting it, I realize that just like being positive in everyday life, being happy on Christmas is a conscious decision. So today, I am making that decision – the decision to try to enjoy the season and not focus on my dreams.

I am going to try to make other people happy. Maybe it will help me get back into the spirit of the season. If I can buy someone’s coffee while I’m out shopping, or find a homeless vet who hangs out on the corner near the mall and give them $20. Or get back to leaving my Positive Post-It Notes around town while we are out and about…*IF* we are out and about. I really want to be able to share the positive and the happy and give someone a smile. The more people who see kindness, maybe it will spread and the rudeness will diminish?

I honestly believe in karma and “what goes around comes around”. I just have to be patient. And patience is not my best quality.

One can only hope, though.

So I am going to ask you to do the same. Maybe it might help you too. Be kind to everyone. You never know what their story is.

Be kind. Smile often. And spread the happiness.

LadyJai

If you’re willing, I would love to hear your stories as well. Let us all feel not so alone, especially during this holiday season so we can have a little bit of light in the PTSD darkness. Love you all.

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Holidays

Yesterday was Mother’s Day.

I don’t understand. After 40 some years, I still hope that someone would surprise me, go out of their way to do something, anything, extra special for me, wait on me hand and foot, pamper me, just for one day make me the priority. I am feeling that selfish twinge again.

When I was little, I always had dreams of surprise birthday parties, or surprise trips, or anything that would be grand and exciting for my birthday. But, alas, my birthday was smack dab in the middle of summer. And living in a military community, my friends were either on vacation, or living off base and we couldn’t get together. I was always left to have a very small birthday with my mom and dad. Eventually, my birthday became just another day.

When I got into high  school and started getting interested in boys, Valentine’s Day was special. The schools would sell flowers that the guys could buy for their girlfriend or secret love. There were so many girls that got at least one flower. Me, usually I had none. My boyfriends were either short-lived, or non-existent. I wasn’t popular, nor exceptionally beautiful. And most guys were not very “creatively romantic.” The older I got, the more I saw that it was really nothing more than the retailers trying to guilt everyone into buying some overpriced thing for their love and if they didn’t get the biggest, most expensive thing then they really didn’t love that person. I resolved myself to the fact that Valentine’s Day was just another day. And I was OK with this because, really, you should be loved and cherished all the days of the year without being made to feel guilty.

Thanksgiving, Christmas, and Easter, again being a military family involved a lot of distant friends and family. They’ve  always been a tight-knit holiday celebrated between me, my mom, and dad. We lived so far from their family that travel was way too expensive. I can only remember one Christmas with my Mom’s Aunt and Uncle in Washington state. The only time we got to see my mom and dad’s parents and siblings were when we were on our way overseas. Every 4 years doesn’t really make you close. So our holidays were always just the three of us. But it was always about the family being together.

Maybe it was living in England. Maybe it was being a close-knit family. Somehow, I developed my ideal image of Christmas, the kind you see in a Thomas Kinkade painting. A quaint little neighborhood. A blanket of virgin snow. A single trail down the center of the road that leads to the horse-drawn carriage. Christmas lights and decorations lining the streets and warm the houses. Everyone smiling and wishing passersby a Merry Christmas, helping those who needed help, and giving a small gift of friendship in any form. Friends and family circling round the fireplace drinking hot apple cider, singing Christmas carols, and sharing in the warmth of the love.

TKholidaygathering2

My heart and soul must live in a different time period because with each passing Christmas, I realize there’s no more magic in it. It makes me incredibly sad and frustrated. I want the magic. I want the love and warmth.

Because of the issues my husband faces daily. The pain, the depression, the forgetfulness, and everything else that comes along with my wounded warrior, my ideal Christmas never unfolds. Most of the time we don’t put up decorations. And if we do, it’s what I can put up myself, or with the help of my son. There’s no desire in my husband anymore. Every day is just about getting through the pain.

There have been so many family holidays and get-togethers that he’s missed because of the pain. I know it tears him apart. Now. But there was a time that those auto-thoughts kicked in and I wondered if he disliked my family, or he hated doing anything with me, or he just hated going outside. It took several years, and a lot of communication with him, to kick those auto-thoughts to the curb. Even now, I still have to tell them who’s really boss in my head. Some days are better than others.

So, yesterday was Mother’s Day.

The one day everyone raves about what their husbands and children do for them. Breakfast in bed. Homemade cards and crafts. Surprise visits. Dinner out or at the very least, cooked by anyone other than the Mom. Now that I’m in a community with other Veteran Caregivers, I see a different side of Mother’s Day. Many feel the same as I do. Left out. Just another day. Wishing that someone would make them the priority, or even an effort. But there were so many other posts out there where their veteran was blowing up, arguing, ignoring, leaving. These ladies were feeling that they weren’t important or loved or even recognized. Their day seemed so much worse than mine.

It made me take a step back and look at my day. Yes, sure I woke up like every other day. I laid in bed until TheBoy got up. TheHubs was already awake, downstairs watching TV after a night of insomnia. Yes, sure I had to remind both my son and my husband to wish me happy MomMom’s Day. But, hey, I got hugs and kisses. Yes, I made breakfast. And yes, hubs went to bed soon after we woke up. I managed to wake him up around noon and asked if he wanted to go with us to get groceries and TheBoy a new set of swim trunks. His pain level was pretty bad and I gave him two hours to see if it would calm down. Nope. As per usual, it remained high. So TheBoy and I went out by ourselves.

I had those bad thoughts, those selfish thoughts again. But I didn’t let them get to me. The guilt tried to creep in, too. But I pushed it aside and did what I needed to do. I did do something bad, though. I bought some cookies, some donuts, and also the items to make strawberry shortcake. I also bought Subway for dinner. Hey, it was Me Day, right?! 😛  I wanted to go to the salon and cut off all my hair but decided I wouldn’t put the boy through that. I also wanted to look for a new swimsuit for me too. That whole ordeal, for both of us, was a disaster. But we did have a little fun with hats (in which I bought him one).

When I came home, TheHubs was on the Xbox. I had to bring the groceries in and put them away without his help. I understand that playing the Xbox does tend to allow him to forget his pain temporarily. I’m going to be honest with myself, and with you: I was a little upset when his match was over and he didn’t help out.  I was a little upset that he didn’t take time out to eat with us. I’m not entirely sure why I was exhausted after 3 hours of grocery shopping. So I went upstairs and laid down on the bed to watch some shows since he was downstairs playing his game. Yup, just a typical day for us.

While I was laying there, alone, I went over my day and all the posts I read regarding Mother’s Day. And you know what? I need to let go of those unrealistic expectations, those magical dreams of the perfect holiday, and just enjoy the small things. Count them and watch them pile up. Soon, it will be a HUGE mountain of positive.

My husband’s alive. He loves me. My son is alive. He loves me. He made a card with love  for me. We were together at the store and had fun trying on hats. We were able to enjoy some good food. And we made it through another day. I’d call that a win.

So when another holiday rolls around, I just need to sit back and enjoy what I have, even if hubs can’t participate fully. Because, you know what? I’m loved and cherished every day. Every holiday is just another day. I am thankful for what I have.

LadyJai

Fear

Fear
The distressing emotion brought on by impending danger, pain, the unknown, hopelessness, etc.

We all experience it.

I always thought of myself as fearless when it came to change. Being an Air Force Brat, I expected change. I was raised knowing that “change is the only constant.” Thinking back, I realized it was only a facade.

I wear it well.

With each new move came the dread of leaving friends and having to make new ones, proving myself all over again. It always ended the same. I learned to harden myself so much that isolation seeped in.

Then there was all the school studies and boyfriend angst of my teenage years. The fear of failing still haunts me. The fear of my husband leaving me like all the other guys ever did lingers at the back of my mind, even after 24 years of marriage. I still have fear of failure with my job. Each new job, each new responsibility, the possibility of any change drives the fear forward and causes panic. I’m comfortable with my schedule, my commute, my job, my life. Anything that could ever cause an uproot to my comfort zone I fear. And I think that’s why I tend to not progress/excel in anything I do. Overcoming this fear is quite difficult.

But not as difficult as overcoming the fears that haunt my soul today.

What’s worse? The fear that comes along with caregiving. I struggle daily to beat the fear back into the corner, slashing and hacking away at the negative, the fears that try to sink me. I’ve expressed some of these fears with my husband only to find out that he has them, too. After joining some of the Veteran Caregivers support groups I’ve found that my fears are very common.

Will his pain ever subside? Will he ever get better? Will we ever have a normal life? Or is this the best it’s ever going to be? Every day I go to work, I leave my husband home alone. He takes care of our son, feeds him, gets him off to school, and greats him when he comes home. But those days when he hasn’t slept, or the pain is too great, or when he has trouble waking up, I’m afraid. I’m afraid that our son will be left alone, that I’ve left my husband alone in a time of need, that he needs my help, or the doctor’s, but as stubborn as he is won’t ask for it.

Or maybe today’s the day. He’s at a very high risk for stroke because of the sheer number of migraines he gets per month. Added on to that, he has an even higher risk because of the amount of medication he takes for his migraines. Then, there’s all the other medications he has to take for the rest of the pain. It’s all so very taxing on his body, not to mention his mental state.

And that’s another point, his mental state. Anyone who suffers chronic pain will go through bouts of depression. He’s been suffering 15 years now and we’ve gone through all the cycles. On top of that, he’s been diagnosed with PTSD. So, the fear of losing him to that battle is always with me.

I’ve always feared the medications he takes. They are some serious drugs with serious side effects and mixing them together, well, that’s caused us many a heartache, too. From hallucinations to catatonic, from wired to narcolepsy, from excited to rage. I cringe each time a new medication is introduced. The words, “Let’s try this” make me want to vomit and cover my ears and scream, “no no no no no no no no no.” We’ve heard it so many times over the years. And we’ve been traumatized with two near misses with a very deadly interaction called, “Serotonin Syndrome.” I wrote about it on my other blog a while back, the last time we experienced it. It’s definitely not pretty. I do hope you will read it, just to know the warning signs–especially if you take migraine medication (triptans) and any SSRI antidepressants or even the supplement melatonin. So, yeah.  Any time there’s a change to medication I get very afraid.

Before we knew to look for side effects and drug interactions, his moods would swing drastically. There were times when the wind would blow the wrong direction and he’d rage out over it (not really, but it’s an example of how random his anger was over trivial things). It scared me because I didn’t know how to handle it. I always thought it was my fault and do my best to not provoke him. This always led to anxiety, acid stomach, and bouts of crying from me. I’m slowly overcoming this fear since we’ve learned to recognize it, understand why he experiences it, and actually manage to communicate better through it.

I think, right now, the worst fear is when he texts me “I’m in trouble.” He’s been getting worse over the last few years. Nothing we do has been any help in at least reducing the pain. And now, he’s coming off a heavy drug that’s very hard on his system. So when he tells me he’s in trouble, I panic. Does he need me to come home and help him? Do I need to take him to the ER? What if it’s worse than he’s letting on? What if I can’t get to him in time?

Then there’s the fear of financial drain. We go to the VA for some of his treatment, which incurs long travels and gas. But what the VA doesn’t provide, we have to use a civilian doctor, which is more often than not. Each year gets more expensive than the last. And we’ve already spent more in less than 3 months as we had in 9 months last year. Dear husband is weighing his treatment to our finances. Sure not having money scares me. But also watching his pain grow greater because we cannot afford to pay for his treatment scares me more.

Oh, and all those times when he has to drive himself to the doctor, especially the VA doctors that are so far away, it scares the hell out of me. Taking time off from my job just to take him to his appointments is scary enough. I don’t want to lose my job and then we would really be in a world of hurt financially. But every time he gets behind the wheel when he’s not been to sleep in 24 hours, or in so much pain, or just took some medication to dull the pain, scares me. He’s been doing it for at least the last ten years, he knows how the medication affects him. He knows when he needs to pull over. But still, it scares me. I wish I could quit my job and be a full-time caregiver but that’s not financially feasible.

And God forbid if I get sick, or hurt, and am out of work for an extended period of time. Who will take care of him? Our son? Me? What happens if I die? How would he survive when he’s told me oh so many times that if it weren’t for me and my love, he’d probably be dead by now.

There are too many fears that I face to go into each and every one of them, and they change with the situation. But you get the idea, right?

You can't live a positive life with a negative mind...

The truth of the matter is, regardless of our circumstances, we all have fears. Caregivers and non-caregivers alike. Just as those who suffer debilitating fear must confront that fear in order to get through the day, so must we admit our fears and meet them head on. If we ignore them, let them stew, the grow bigger, and quickly turn into out of control monsters. They smother us and drag us down until we can no longer surface and break through to the bright positive side of life. I know, I was there just recently, where I that’s all I heard. And I listened. I could not fight my way out and I saw no hope. I felt overwhelmed, selfish, guiltyangry, and alone. I was unworthy of anything good.

Ever since I had my epiphany to live life as positive as I could, I hated feeling this way. I knew what I needed to do. I needed to get out of the funk. I just couldn’t figure out how. It takes a lot of hard work to be positive. And I just didn’t have the energy. I needed some help and I was afraid to ask for it. No one would understand. Or so I thought.

I finally made an appointment with my doctor and he prescribed a mild anti-depressant which rebooted my brain. I started to think more clearly and I finally managed to find myself some like-minded people and I knew I wasn’t alone in all this. I began climbing up the well towards the light again.

Do I still have fears? Absolutely. Every day. Every situation. But I don’t let them rule me anymore. Some days are easier than others. Some situations, too. But it has to be a conscious effort to keep positive. It’s the only way to get through all of this.

I will leave you with one of the best quotes I’ve found about fear from the book Dune. It really is the mind killer.

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain. –Frank Herbert, Dune

LadyJai

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

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.

Guilt

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. 

LadyJai

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!

The Veterans' Voice Article - 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.

not alone

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.

LadyJai

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.