Tag Archives: support

Advocating For My Wounded Warrior (Part 3)

I’m sorry to have been away from my blog for so long. It’s been a very, VERY, busy year. Work has been kicking my butt and by the time I get home I really don’t want to do much. We’ve had some other things kicking our butts too, but that’s another story (click to read more). I’ve also taken on a new hobby that incorporates some “me time” along with my love to share smiles and helping veterans. I joined Pinups For Patriots! YAY! Go me! If you want to check out what I’m doing in the Pinup world, please like my Facebook Page.

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Anyway, what I would like to talk about today is the fact that I haven’t stopped advocating for my husband when it comes to his pain and the VA. In fact that is also another part of my busy life. So, last year in October was his last civilian Botox treatment.  He was due for another one in late December, but you know how the Holidays always throw off everyone’s schedule. So we went to schedule it in January. For the past 3 years he has been having this done, every three months, all we’ve ever had to pay for was the doctor’s visit. The Botox was covered. Well, 2016 rolls around and not any more. We will have to pay $1000 every 3 months in order for him to get his Botox. We just couldn’t afford this.

So I asked him to ask his Primary Care at the VA to refer him to VA Neurology. He had that appointment on the 3rd of February. When we explained the conditions, he said, “No problem. I can refer you to the Pain Center for that.” We also brought up the fact he wanted to try Ketamine Infusions. And the doctor said he would include that in his referral and we could discuss it at the Pain Center.

A month goes by and we never heard anything. We logged into MyHealthEVet every so often to check for an appointment. Called the VA Pain Center and they said they never received a referral. He finally found out that on the 4th of February, a different doctor went through his records and saw that he was getting care outside the VA for Botox and revoked the referral.

Joy.

Ok, two months have gone by since the original Neurology appointment. He had his first visit with the VA Pain Center, his consult, on May 6th. May 6th! And even though he’s been there before he STILL had to go through his history. Oh and it’s all right there in his medical records! But they decided to start from scratch. He had to go through a “test” procedure with steroids and lidacaine, something that he’s gone through so many times before and it didn’t work. It was documented in his VA medical records that it didn’t work. Yet they wanted to do it again since “it’s a new procedure.” Um, no it’s not. TheHubs explained to the doctor the exact procedure he went through the last time he was there. It was the same procedure the doctor was explaining to him. But, let’s try it one more time. That happened on July 5th. And guess what?! It did nothing for him.

Ugh.

So we had to wait even longer to get that Botox injection. His next scheduled appointment was 3 October. This was when he was to have his Botox. Even though we brought his civilian doctor records of the last 3 years worth of injections, the VA only does half the dose at double the time. Oh this is so frustrating. During this appointment we also found out that the VA Pain Center is not trained to do most of the areas he has been getting Botox injected into, which happen to be his worst areas. So they are writing in his notes that he needs a referral to go to Neurology to do that. We also mentioned Ketamine Infusions. They said they have done a few of those in the past but he needs a referral for that as well. The nurse instructed us to contact his PCP to get that referral.

We sent a secured message to his PCP on the 4th. We get a reply on the 11th stating that Neurology is submitting a referral to the Choice Program (where he can see a civilian doctor). Of course we haven’t heard anything. I call up The Choice Progam and they don’t have an authorization letter for me to speak on his behalf, even though we’ve sent it in multiple times over the years. Apparently they are not the VA, but work with the VA. Ok. So I finally get to talk to them and they don’t have the referral yet and it usually takes at most 3 business days to get it.

We sent another secured message to his PCP and the nurse instructed us to contact the VA Neurology. VA Neurology knew nothing about a referral. They said his Primary needed to submit the referral to the Choice Program. Emailed his PCP back, and they said, no, Neurology needs to submit the referral.

Oye ve! Can we please stop this merry-go-round? I want off!

When we emailed the PCP back, the nurse said that she will “forward this to a specialist,” whatever that means.

So, I’m still fighting for my husband for him to get the care he deserves and hopefully some relief from all the pain. It breaks my heart to see him balled up in bed, ripping at his hair, squeezing the crap out of his neck, nearly in tears all because of the pain.

This was taken outside the VA Pain Center when he went in for his procedure…the first time. I just love it!

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LadyJai

Related Articles you may like:
Advocating for My Wounded Warrior (Part 2)
Advocating for My Wounded Warrior (Part 1) 
Our Story

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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Our Story

VA Appeal Update

VA Appeal Update #2

VA Appeal Update #3

VA Appeal Update #4

VA Appeal Update #5
VA Appeal Update #6

PTSD, TBI, Sex and Relationships

After 26 years of marriage, we’ve only just now started opening up more, having conversations about these very topics. I have not been able to put them into words yet. I am still processing. But this….this post explains it all. I will return here and re-read and re-read until I can understand it better. I don’t think I can fully understand what goes on in his mind. I don’t think he ever wants me to, either. But this blog post helps me tremendously. I do hope it helps you too.

Life After War

You came back different. Changed. You can’t really describe  it, but you’re not yourself. Not who you used to be. You’re angry. Blow up at stupid shit. Lack other emotions. Feel numb. Tired. Disinterested in stuff that used to be interesting. Tense. Sleepless. Have nightmares that scare the hell out of you. Forget shit. Can’t focus. You miss your buddies. Miss the war. Miss the ones you lost. Miss feeling like you used to feel. Before.

He came home. Different. Instead of you being able to step back and let him take over sharing the household, childcare and financial responsibilities, you have to take care of him now, too. He’s angry. Silent, except when he’s mad. He can’t remember shit. Seems unmotivated. And distant. He’s up all night; keeps you up all night. Spends more time on the sofa than in bed. Keeps loaded guns around the house. Is edgy…

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Building A Support System

I’ve come to realize, these last few years, that it is very important for caregivers to have a support system in place. Without it, we would go insane. I spent nearly 13 years thinking I was alone in my struggles, that no one could ever understand my home environment, my husband’s issues, and the daily struggles we go through. Now, after being introduced to the military caregiver community, I know that despite the different situations that got us all on this path, we all share the same struggles. Maybe not at the same time, but we have or we will. We are all on the same road, just at different points. We can offer up advice to those just starting, or gain knowledge and wisdom from those further along the road. I was blessed with this realization and with the group I formed a bond with, and the one person I spoke to daily. I actually had my first friend in 10 years.

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And then the S*%t hit the fan.

Even though we were all experiencing similar issues and in a group to SUPPORT one another, drama still unfolded. I don’t do drama well. And when I start seeing favoritism and rule breaking, especially when it harms the entire group, I had to say something. And when I spoke up, I was the one ostracized and then the bullying redirected my way. I couldn’t stay quiet. I stood my ground and lost everything because of it.

It’s been 8 months since that happened. I was devastated. I lost my support group. I lost my friend. I lost my lifeline. I started slipping back into the darkness and began listening to my demons again.

This time, though, I knew I could get out of that funk. I knew there were others out there that were living similar issues. I knew I just had to find them. It was a struggle for sure. I went through several new online support groups. None of them really clicked. Some even dissolved as soon as I joined due to previous drama of their own. Others I am in are not very active at all.

One group formed out of the dissolution of another and I was invited into it. Since then, it has grown and I have been pretty active in there. It’s not as quaint as the previous one and the growing numbers make it a tad hard to connect with any one individual. But another good thing came out of this group. Since we’ve grown so large, and the caregiver community is so spread out, we have branched off into state groups as well. This may be a bit more manageable, as well as closer both physically and emotionally since we are all in the same state and in smaller numbers.

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I feel like I’m back on the track with an online support system. I have forgiven those from the previous group who left me broken. I have an online support where I can go and ask a question and offer assistance and prayers when needed. Now, though, I have to find people I can go to locally that I can ask if something were to go catastrophically wrong.

There have been times I had to take TheHubs to the ER where we had to wait and wait and wait. We usually waited so long that we had no food and no one to come bring us food, especially for a growing boy. This is when I realized I needed a local support system as well.

Unfortunately, I’ve always been one to never ask for help. I will gladly give of myself to others in their time of need. But when it comes to me, it’s like I just don’t want to burden anyone with my issues. Why do I do this? I am human. I have problems. Everyone has problems. And I don’t think it is a burden when someone comes to me with a problem. But my problems I view as burdens. Why? I have yet to figure this out. And I have to consciously acknowledge this and accept that I am human and my problems are not a burden to others who want to help and have offered. This is sooooo hard. Even though I have my parents close by, they are still a 45 minute to an hour drive from us. And it’s still hard for me to tell them all that we struggle with. Plus, they have their own lives. Even though they are retired, they still are always on the go, so when appointments come up for us that do not mesh well with school or work or other activities, I have to rearrange schedules or take time off work. That aspect is getting a bit easier as TheBoy ages though. But still, I worry about what would happen if…

Does anyone have any suggestions on how to accomplish a local support system? How to allow myself to let go and ask for help when I need it? Anyone?

Maybe I just need lessons on how to be a good friend because it’s a two-way street. 😛

LadyJai

Related Articles you may like:
My Personal Anti-Bully Campaign
Anxiety, Depression, And Secondary PTSD
You Are Not Alone
My poem about depression and hope, entitled Pieces

When The Fog Burns Off

Several weeks ago, my husband called me while I was at work.
Nothing unusual about that.

However, this time his voice was broken and quiet and he said, “Something happened.”

My mind raced within a microsecond of what could possibly have happened. My throat closed. My stomach flipped.

Before the sobs took hold and the line went dead, he managed to tell me of the memory that the fog had shrouded from him since the incident happened in Kosovo back in 1999.

My own silent panic raged inside of me while I dropped everything at work and sped home. He was no longer answering the phone. The more I tried, the faster I drove. Even if we had someone who could go check on him, I knew he was in no state to answer the door. Had I called 911 and had a sheriff go out, it probably could have made things a thousand times worse. I just had to get home as fast as I could.

I already had a plan in my head if I were to get pulled over by the police for speeding. I would have handed them my driver’s license and told them to meet me at my house because my husband was in full PTSD meltdown and I needed to get there as fast as I could. (Honestly, in hindsight, I probably should have called 911 to let them know what I was doing. Not sure how that would have ended though. Would they have come to the house? Would it have made TheHubs worse?)

Once I got home, I found him huddled under the covers, won’t come out from under them. I called his VA doctor and between me talking with him and the nurse talking with him while I held the phone to his ear, we finally calmed him down.

But that memory of his time in Kosovo, that memory that his brain had protected him from, still lingers.

PTSD never gets better. No amount of therapy or drugs can make it so. I don’t care what the VA says. PTSD is something that will haunt the person for the rest of their lives. They, alone, are the only ones who can manage it. Living with someone who suffers PTSD is not so haunting, but it does affect everyone it touches in some way. Those of us who live with, and love, someone who suffers with these demons has to learn to adjust. And the only way to learn is through communication between everyone involved.

I am blessed that he is comfortable enough, trusts me enough, to share with me his demons. But I am also cursed with the knowledge of those demons and knowing that I will never be able to take them from him.

LadyJai

 

 

Related Articles you may like:

Our Story
PTSD or Moral Injury
Anxiety, Depression, and Secondary PTSD

Positives For Last Week – #CelebrateTheSmallThings – 5 February 2016

I’m a bit late posting my Celebrate the Small Things. But the positive is, I’m posting now! 🙂

Obligatory VA selfie!

Obligatory VA selfie!

POSITIVES FOR THIS WEEK:
1) My Hope Bucket for “something to work” for TheHubs has been refilled. I have to remember it’s the VA we are talking about so that Hope Bucket needs to have a filter on it so I don’t let it run away on me.
2) After dealing with the many ID-10-Ts on the road on Friday, we saw a RANDOM ACT OF COMMON SENSE while pulling into Taco Bell so we bought the guys lunch.
3) Took Ms. Rose (the older lady I helped after an accident back in December) to the store and bank since she hasn’t gotten a new car yet. I feel bad for her. She’s always telling me she wishes I were her daughter. She buys me things when I tell her not to. I feel awkward with her, but it’s a good thing to help her out. But I’m still always awkward.

What are you celebrating this week? 

Thank you to our lovely host, Lexa Cain for taking over and continuing the Celebrate the Small Things blog hop. I would also like to thank her co-hosts, L.G. Keltner @ Writing Off The Edge and Katie @ TheCyborgMom – without them, I’m sure this would be a daunting task!

To be part of this blog hop, all you have to do is put your name on the linky list on Lexa’s Blog, and then post every Friday about something you’re grateful  for that week.  It can be about writing or family or school or general life.  This is the funnest and easiest blog hop ever! (Originated by VikLit)

LadyJai

Related Articles you may like:
Goals for 2016
Been A While – Celebrate the Small Things
Pain – Celebrate the Small Things

Goals for 2016

Resolutions have always set me up for failure.

I’m not very good at keeping at things that are solitary. Even when I was little, I found ways to get out of doing something I didn’t really want to do. I usually gave up when the expected results were not met, especially if it were not near immediate results.

I’ve been good at not wanting to give up writing. That’s the one thing I vowed never to give up, especially after I re-found my dream a few years back. However, the last two years of “finding myself” through this blog, as well as taking care of and understanding my situation with TheHubs, well, my fiction writing has been put on hold.

With the new job duties I was given back in August of 2015, the stress of that has left me utterly exhausted on top of everything else I have to do. The holidays were rough, but I had time to relax a little while working from home and trying not to work on vacation. Over this time, I came up with a few goals I would like to see myself achieve in 2016. If I don’t complete them, that’s ok. The only thing I want to do is make progress.

I came up with this saying a few years back on my writing blog, to help me get (and keep) my focus. Because, really, it’s all about the progress, the journey, not the end result. I have to retrain my brain, which is an ongoing process-one in which I fully intend to keep until my dying breath.

So, forget about the words. This can be attributed to any goal you wish to set. If you’re interested in how I came up with this Golden Rule, go ahead, click the image. 😛

So, my goals for 2016 are as follows:

  • Remain Positive. Keep looking for the positive in every situation, no matter how small. This is very important, and the most difficult. But it’s the only way I can survive.
  • Practice patience, especially when it comes to the VA. I also need to remember to do this with my family as well. When I get stressed, I fail. So I need to keep reminding myself.
  • Keep up with placing my “Operation Beautiful/Positive” Post-it Notes for everyone to see. Sharing is caring. Being the reason someone smiles is a wonderful feeling, even if you don’t know who it is, or even IF they smiled. The other idea is that you never know who NEEDS it at that moment.
  • Make time for writing. Do, or do not. There is no try. My 2nd novel has been on hold far too long.
  • This one will be my most difficult, I fear.
    Since August, with my new position, I’ve been dealing with a lot more stress at work and very little time for my family’s needs. So, I hope to not let a certain someone/situation at work bother me like it did last year. I’m already on my way to accomplish this since that someone/situation did try to get under my skin earlier this week and I didn’t let it bother me. I think I will utilize my white board at work as a tally board.

What do you think? Good? Should I add more? I’m open to suggestions.

What are you celebrating this week? 

Thank you to our lovely host, Lexa Cain for taking over and continuing the Celebrate the Small Things blog hop. I would also like to thank her co-hosts, L.G. Keltner @ Writing Off The Edge and Katie @ TheCyborgMom – without them, I’m sure this would be a daunting task!

To be part of this blog hop, all you have to do is put your name on the linky list on Lexa’s Blog, and then post every Friday about something you’re grateful  for that week.  It can be about writing or family or school or general life.  This is the funnest and easiest blog hop ever! (Originated by VikLit)

LadyJai

Related Articles you may like:
Been A While – Celebrate the Small Things
Pain – Celebrate the Small Things