Physical Health Issues and the Ordeal that Comes

My husband was diagnosed with asthma while he was in the military where he was exposed to burn pits and environmental exposures during several deployments. In the last 5 years, every year, his asthma has only gotten worse. In the last year and a half, it’s resulted in over 8 ER visits at the VA. The last ER visit was in August of last year.

This time, I begged him to go to our local ER instead of the VA. This ER ended up admitting him for two days. During that hospital stay, they did more for my husband than the VA did in the last 10 years. One of the things the civilian hospital did was a CT scan where they found lung nodules and his thyroid enlarged.

We are now almost a year later, and his breathing only seems to be “good” when he is on prednisone. He also takes a Nebulizer daily, along with a daily inhaler, and has a rescue. He waited months to make a follow up appointment with the civilian doctor they sent him to. I think it has been avoidance and his PTSD that complicates things. He finally has an appointment in August.

The nodules concern me. But the VA doesn’t seem to be in a hurry, or seem to care after we gave them the reports from the civilian hospital, or even after the numerous VA ER visits. When it comes to his physical health, the VA has done such a poor job. Their only answer seems to be to throw medication at the problems, instead of actual treatment. It’s so stressful and frustrating dealing with them on EVERYTHING. In addition, the wait times, even prior to COVID, are absolutely ridiculous. It’s a full time job, on top of my full time job, caring for my husband, and raising a family, while dealing with them.

In the 10 plus years he has been at the VA, he has had half a dozen or more primary care providers. And each time, everything starts back over, and things fall through the cracks. He has yet to see a pulmonologist at the VA after being in their system for 10 years, diagnosed with asthma, and it brought up at each visit. He finally got a referral last year, but still hasn’t seen anyone! The pulmonologist said he needed a current pulmonary function test. I told the nurse when she called, they have a copy of 2! And we have yet to hear anything back.

Honestly I haven’t pursued it because every time I call, I spend a minimum of 45 min on the phone, most of the time going in a round Robin, hang ups, and not getting to who I need to. It’s time consuming and draining. We are lucky enough to have private insurance, so I have pushed to have him seen outside the VA. However, we are still spending money for deductibles, co-pays and co-insurance. But he gets seen much faster. And if, God forbid, it IS cancer, hopefully we can get an affective treatment plan in place quickly. I feel like if we waited on the VA, he would die waiting to be seen.

This Time of Year

As many of you know, my husband has PTSD from several deployments overseas in the military. What some of you DONT know is the hell that can/does come with it. This month, May, is mental health month, and starting tomorrow, June 1st, is PTSD Awareness Month. This is also a traumaversary month for my husband. Generally, Jan-June 1 is an exhausting roller coaster ride filled with sleepless nights, waking up not knowing who I’ll wake up to, locking down car keys, and credit cards, keeping 2 young boys quiet when finally, he does sleep.

It’s tiring, stressful, frustrating and lonely. It feels like you are fighting the world…fighting alone. You fight to keep your loved one alive, hanging on for dear life in the constant ups and downs. You fight the VA, who fails to see the trauma your family endures, and wants to lower their rate because they think, magically, your spouse is better. You fight alone, in silence, screaming on the inside, wishing the world tried to see the pain, and trauma endured, getting annoyed when you hear civilians thank a veteran or saying how they support the troops, with little action put to words. Words that feel like a saying to make them feel better, without doing any real work, or trying to learn, truly supporting veterans and their loved ones.

By Memorial Day, I’m exhausted, and depressed, frustrated, on constant high alert and still hanging on for dear life, having continually tried to keep a sense of normalcy and keep the ship that is our life, afloat. No one sees the daily struggles, the stress, the secondary trauma.

Most who meet my husband won’t know. They won’t know that he is “off” at the moment. His affect changing. They won’t know that he jumps out of bed between 2 and 3 am, like clockwork during this time. How he gets addicted from the adrenaline pumping through his veins. So he fights the meds, the sleep, and the eventual depression that he knows will come with the crash.

After 2 days of no sleep, my husband that I know and love begins to fade. By the 3rd day, a different person, more hyper, stubborn, almost a force of nature, takes hold. The speech becomes more rapid, more moody, more brash and sometimes unpleasant. He gets to a point where he won’t listen to reason. His decision making skills are questionable. Previously, during these blights of sleepless time, it has resulted in buying expensive items, to include expensive cars, we can’t afford. It’s resulted in locking down his credit, and limited his access to credit cards and our main accounts. In his clarity periods, he understands, but in times like these he gets mad, and forgets why these plans are in place. And although he wouldn’t admit it, I believe he has more thoughts of suicide, from comments he has made.

His memory, that’s another thing. He often repeats information or conversations we have continually had, especially during these periods, forgetting we ever had them. It’s a recurring theme. He doesn’t understand why I get annoyed. I try not to, but, my own trauma is in play. We almost play the same themes over each year, like a broken record. Same thought construct, same war movies, same trauma that comes.

Some things have gotten better. I mostly know what to expect. Our safety plan is working better and we are more prepared. We keep an open dialog with his psychiatrist. But, it doesn’t make it any easier. It doesn’t make the trauma we go through yearly, any less tragic than what it is. It’s hard to talk to people about what we go through, especially if they don’t understand.

We have simply been trying to survive the past 10 years, between his PTSD, and now, his lung issues. It’s been one foot in front of the other, one day at a time, even one hour at a time. The world doesn’t see what veterans, and their family, really, go through with having a loved one living with a mental illness. It isn’t their fault. The person they are when the episode takes place, isn’t who they are. It isn’t the person that we know and love.

Military Spouses

There is something to a military spouse.  The resilience, strength, and ability to adapt to change at a moments notice is something we as military spouses have, and continue to have, if not more so, after our loved one comes home.  We have a bond and connection to one another even though we dont know one another.  We have that knowing of “I’ve been there” empathy towards each other, or “I can only imagine what you’re going through”.  We are a small community, and can even say family.  We are one of a kind.

Eleanor Roosevelt

They Sacrifice

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Don’t think our service men and women don’t sacrifice?  Think again.  Not only do they sacrifice themselves when they go off to war, but while gone, they sacrifice time with their family, missing out on birthdays, holidays, births, deaths, and special moments.  They miss that first step their child makes, or the first word, or even the first day of kindergarten.  From war, many lose a piece of themselves, some physically,  some mentally, some both and some lose their lives. 

While yes, we do have a volunteer military, and our loved ones volunteered for their country, they did so so yours wouldn’t have to.   If not for the men and women who volunteer for the war they go to (justified war or not), those who don’t want to go, would be forced to do so.

So while you may not agree with their mission, you can still support the ones that fight.  They are still owed our gratitude and our respect.  They have sacrificed so much, and are asked to continue to do so.  Isn’t it time we sacrificed too?  For many, the scars are deep, and for some, invisible.

The support shouldn’t stop once they are home.  Support our Vets should be just as big of a catch phrase and action as Support our Troops. 

We lose 22 veterans a day to suicide.  Shouldn’t it be time we tell them #youmatter?

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Ways to help

I often see questions from civilians who do not have a loved one that is a vet or a service member,  what can they do to show they support the troop by more than simply saying it.

As the spouse of a veteran with PTSD, here are some of my suggestions.

Get involved – Many communities are creating organizations to touch on military and veterans issues.

If you are in a church, find a way to create programs to help vets and their families. For example, create a children’s night. Have a safe place the parents can drop the kids off, knowing they are safe, to give the kids a chance to play with other kids, and a chance for mommy and daddy to reconnect.

If you are a pastor, educate yourself on PTSD, and get training so you can help those in your congregation that may be suffering.

If you own a business, hire a vet.

If you are a professional (Dr., psychologist, therapist, lawyer), offer pro bono work to veteran’s and their families. Many vets and their families are going without healthcare. Many need a lawyer because they have gotten themself in trouble, or they have family issues, or need help with appeals, ssi or initial filing.

Find ways to help them. Find out what their needs are. Sometimes they just need someone to talk to. Be there for them. Some are coming home to no help or loved ones. Try to become a friend to them. There are many ways people can help. When you say we support our troops, don’t just say it, but mean it.

The last suggestion I have is, educate yourself on invisible wounds.  Help us raise awareness, and join us in fighting for them.  Write your congressman and senators, demanding action.  Demanding more help, and for them to start showing their appreciation for our vets.  Find out which politicians are against veteran’s benefits, and NO MATTER WHAT PARTY THEY ARE IN, VOTE THEM OUT.  We do not need politicians up there who want to take away the little benefits that our veterans do get.  They have no business in Washington.  I dont care what party they are in.

Support our vets

PTSD is like a pickle

I remember when we first started the process of getting my husband into the VA, my husband’s case worker gave an analogy to describe PTSD.  PTSD is like a pickle.  You can take a cucumber and turn it into a pickle, but you cant take a pickle and turn it back in to a cucumber.  There are several types of pickles; dill, sweet, bread and butter, “wickles,” etc.  It is up to the person to decide what “type of pickle” they want to be.  You then learn to love the taste of the pickle, but it will never be a cucumber again.  That analogy has stayed with me.  I know that my husband is forever changed, and the person who I knew is gone.  He still has parts of him remaining, but he is forever changed. Learning to accept and love the “new pickled” him has it’s challenging moments, but I still love this man with all my heart, who he was, and who he is now, “pickled” and all.

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Stopping the blame game and putting action behind “Support our troops”

One of the things I try to do is  keep my own political views to myself, at least off my public sights concerning our veterans.  One of the things I always remember my grandfather, and father say is you dont talk about politics (however this doesnt apply to them today, they are just like everyone else, freely speaking their mind about their views).  We all have different political opinions, and unfortunately these types of conversation are rarely kept civil.  Keep in mind, I am a Political Science major.  Not because I want to be a politician, but because I want to “learn the game” to help our veterans and their families, however that leads me to helping them.  The last thing I want to be is a politician, but do want the knowledge of how our system works, can lead me to finding ways to help.
With all of this said, I do want to bring up politics for a moment, but not for the reasons one might think.  One of the things I see over and over again on the posts about the VA scandal is people who automatically begin blaming one political figure, one party or the other.  STOP making veterans about the left or right.  We lose 22 veterans A DAY to suicide.  That is someone’s father, husband, brother, mother, wife, sister, friend.  The number is likely HIGHER than that due to the lack of a streamlined reporting system, and only getting the numbers from 21 states.  Our veterans issues not only affect the veteran, they affect the FAMILIES.  These issues ARE NOT just a republican or democrat issue.  It is AN AMERICAN issue.  Stop trying to make it about blaming one or the other, and come together for the sake of our vets and their families.  We have so many veterans families who are losing everything and many losing their loved one while people are arguing over who is to blame.  JUST FIX IT, and put action behind “Supporting our troops.”

This type of point the blame attitude is the wrong attitude to have, and will not help our veterans.  When we are so divided on this very important issue, very little will be accomplished to help them.

A New Normal

Do you ever feel like you have switched placed with your spouse?  Somehow, someway, you have completely switched rolls, and in some ways, personality.

My husband and I simply put, have switched roles.  My husband at one time was the take charge, take the lead type of guy.  He would make sure business got taken care of, no matter how uncomfortable it was.  Thoughtful and decisive, he made decisions.  If there were bills that needed to be paid, he paid them, even if it meant not having money left over.  He was ambitious, and dreamed of the future.  He was positive, and upbeat, always having a laugh or a smile for someone.  An impeccable memory, he was able to remember the smallest detail.  Anyone could tell you that my husband could also talk forever.  He loved to talk.  It was his “thing.”  Above all he loved to talk to new people, and travel, experiencing a new place, new people, and new adventures.  I was complete opposite of that.  My memory was horrible, although I love to talk, I wasnt one who met friends easily, being more reserved and quiet.  Suffering from anxiety, there were times I stayed at home, not wanting to go out.  Avoidance was a big thing for me, avoiding anything that was difficult, and having little ambition, or dreams.

Now, today, he and I are completely opposite of the way we once were.  He hangs back, lets me take the lead and take charge.  He waits for me to make a decision, or is hesitant in making his own.  Conversations we have are forgotten days later.  Medical appointments, dental appointments, are now up to me to make, and go with him so they are remembered/kept.  I’ve had to help become his memory.  We avoid crowds, and stay home a lot.  When old friends are seen, my husband is now more quiet, more reserved, almost seemingly deep in his own thoughts.  The laughter comes occasionally, but not like it once did.  Some days, he spends his time in our bedroom, away from the world.  Those are the bad days.  Sometimes they come several days in a row, sometimes they dont.  Plans are rarely made, for fear of them being broken.  Invites are politely declined, to the point they are now rarely asked.  Very few understand.

This isnt to say there arent good days.  I see a smile, hear a laugh, and we actually venture out into the world.  He works 5 days a week, which helps with consistency, and purpose.  He takes care of the kids, giving him routine, and there again purpose.  There are days, that I see he needs sleep or help.  I help get our daughter to out the door to school and take our son to school to help him out, even though I will be late to work.  Days where I have had to take off, in helping him, just by being there.  Some days the kids and I have to go out without him, and some days he joins us.  At times, we have several good days in a row.

With all these changes, I’m learning to find a new normal.  Settling into new ways.  Over the past few years, things have been chaotic and all over the place to say the least.  The past year however, since my husband has gotten on a new medication, has been better, and we are settling in a “new normal.”  Our new normal isn’t what I ever envisioned,  but then again, life never is.  I know some days I have to pick up the slack, and on most things take the lead in getting them done.  It isn’t to say he does nothing.  He tries every day.  He tries for us, and some days I can see it is a struggle for him.  It isn’t something I can describe.  Those days if we are able, I leave him alone, and let him sleep.  The kids, they keep him grounded, give him a purpose, and help him through “the darkness.” I’ve learned (although, don’t always abide by) how I communicate with him,, and when to communicate something, and when to wait.  This is the beginning to  our new “normal” life that we are still figuring out.