Messages, Lessons, and Recommendations for Other Veterans and Service Members

I wish right away they would hook you up with a Veterans Service Officer and just say, hey, what branch were you in? Did you have any injuries? Did you ever hurt your back? Did you jump out of a plane and wreck your knee? But I think that would be a big one, to let people know that, hey, if you have these chronic conditions that are related to any type of service, you need to get it looked at through the VA or through a Veterans Service Officer where it can be taken care of because, again, I had no idea until I started working for VA. If I ever need hearing aids or something, I'll want to know that, well cool, yeah. Because there's a lot of times when you're in combat you don’t have time to put earplugs in or whatever, or you'll just hear something shooting over your shoulder. It's just, I don’t know. It's just what happens. And if it continues to decline and if it is in fact related to military service, it would be nice if it was covered, you know? I would have just said to be more proactive as soon as you get out of the service. Like I said, I had no idea I was even able to get into VA benefits, to get healthcare, to have a primary care provider, to just find out what's out there and how to best utilize it just as soon as you can because it's a slow-turning machine sometimes. It takes years for things to happen. So I’d say the sooner you can find out what you're eligible for and apply for it, just to do it. Once I started here and figured out that I had other benefits that I could apply for, I immediately did that, just talking to people around, talking to a few Gulf War Veterans here, because I had no idea what a VSO was. I barely had an idea of what the VA was. I actually was working at a little medical supply place in Redmond, just north of here, and one of the VSOs came in. And I don’t know how he figured out that I was a Veteran, but we started talking about it, and he goes, yeah, I’m a Veterans Service Officer. You should come see me. I’m like, okay. And then he told me I can get some healthcare benefits. I’m like, really? I had no idea. So then I came and signed up for the VA. Ever since then, I just communicate with other Veterans and find out what we have available and who is doing it.

So, another Reservist had Barry as his VA rep. And he said how good Barry was and he highly recommended him. So I figured I'd give him a call because he came highly recommended. So that’s how I got involved here because I'm actually a Trumbull county resident, and this is Mahoning county, so that’s the reason I drive here to see him because he’s so good. He's very informative. Like when I have questions, he gets back to me right away and finds answers. So he’s been really good. The VA people have been great. I, you know, it’s that C&P exam session is horrible. It’s horrible. Well when it came to like filing compensation, he explained the process. Talked about, you know, symptoms those type of thing. Well, you know, this is something you really need to look at or, you know, here’s the way to do it. And then basically me asking him where are we in the process? You know, he kind of keeps you in the loop with the status of things.

It finally just came, it dawned on me, that we have a choice. I have a choice on what lane of gulf war illness that I want to fit into, the conspiracy lane or whatever. I have a choice to submit a claim. I have a choice to surround myself with 3-5 people. I have a choice to be present with my family. I have all these choices, right? I have a choice to live in the past and I have a choice to either say this is what’s wrong, or this is what happened. That’s the thing that we are given every single day is a choice. That is it, so you know, if anyone ever watches this that, you know, took anything away from it, I want it to be that. That I want them to leave knowing that as shitty as this is and as tough as it is to take, even the daily pain, which like I’m having a pain flareup now with all the moving. But we have a choice. We have a choice with how you respond to that. We have a choice in what you do. So, we have a lot of power in choice. So that’s the one thing that I would add. Everything else is just the things that have happened, right. And we will try and deal with those as they come. But it’s my choice in how I respond.

I play Pokémon GO, I mean I found a game to play that’s interactive, but isolating too. I don't know how many of them there really are, out there. But, you have to interact with people to you know, to progress in the game. But you can play it alone too. So, I can choose when to interact on that game, and when not to. And I got my wife playing it, so. But also, I make jewelry, so, I like to create, which I didn’t know I was creative, but I’m learning to be. And, I moved. I moved to a place that was peaceful, and to where I feel at peace. So, control your own environment, you know. And find something that you enjoy doing, whether you think somebody else is going to find that funny, or not, or silly, who cares? If it gives you peace or enjoyment, who cares what somebody else thinks. Not that many Veterans do, but they really, as long as it’s not drinking or drugs. And you know there’s some of that too, but you’re an adult, right? We’re all adults. So, be an adult, really. And you know have a great house like mine.

So, this is, this sounds bad. This does sound bad; I get it. I guess I'm old school and never really had much, I don't know if the word is trust or confidence. I guess confidence is a better word. I never had much confidence in the psych world, the psychiatrists, the psychologists. I kind of never got it, really didn’t believe in it. And I know that sounds bad. So since I finally decided to go do it, it’s actually been pretty good. So I would tell another Veteran to go to the VA and go to the mental health people. It’s not as bad as what you think. And it does seem like it’s helping.

That there’s always somebody out there willing to listen if you’re willing to find somebody to talk to. You gotta be able to open up. And that can be hard. I know it’s hard to open up and tell somebody that you feel ashamed, or you feel left out. For years, I carried around the bag of, “Why did the military let me get kicked out when I turned in my gun during amnesty?” That was, to me, that was them abandoning me and I was doing what they asked me to do.

Just don’t give up on the VA. I mean they’ve had their moments of bad rep, but I mean they’re learning like everybody else. And things are getting better. And if you look at the conditions of the treatment that the Vietnam era Veterans got and compare it to the Iraq and Afghanistan Veterans. I mean when they come out of Iraq and Afghanistan they have got a ton of support for them through the VA. I mean it’s just they’re doing a lot better. And you know that’s their main documentation for their problems is so just don’t give up on them. Give them a chance. You might have to get someone else to put a fire under them every now and then. But overall I mean, I can’t say that you know the VA has let me down. Because you know I'm still breathing. They’re still paying all my bills. When I’ve got a problem they take care of me. So that and have, definitely have something, some kind of support system for your bad days. You know no matter what you’ve got to have, you can’t do it all by yourself. You’ve got to you know let go and let someone else help you sometimes. You know my wife, she helps me. You know. Sometimes I don’t even realize she’s helping me the way I need it. But she does. I’ve got friends you know who you know I may not talk to them for two, three months but you know they might say hey, I just, I was thinking about you. Are you doing okay? So. Definitely have a support system. Don’t push people away. Because they just wanna help.

I guess I've learned the hard way that I should have documented, written down medications and the providers I've seen, because even though it's on record, I've constantly been told it's hard to find. And you start, as years go by, you start to forget what year or maybe even what facility, and there's so much. And by now I have so many notes in there that it takes hours for somebody to find it. And if I can tell them the name of the facility, the name of the medication, it would save so much time. It would be really helpful for me and also to a provider to find that information, so keep track, if nothing else, the names. Just document stuff. I mean, we live in a world where they constantly say that, and it's really taken to heart, I guess, now too late. I wish I knew what I had done, what I had taken. Even when I went to town in Riyadh and Dhahran and Bahrain, I wish I had known where I was eating and what I what I was putting in my body and what I was exposed to, but you just don’t, and you can’t possibly do that for everything. I mean, you get recalls all the time for food in this country, but nobody remembers what they were eating yesterday. It weighs heavy, like I've been saying, that the physical becomes the mental, so don’t wait for it to pile up, I guess. Try to deal with it before it gets big.

I would just say, be in control. Don’t let the health system control what you do, or how you do it. You have to take control and do what’s best for you. And if a doctor tells you that this is what you should do, and that’s not what you want to do, or you feel something else is more effective, then request that, try and get that final result. Because medication in the form of pills is not always the answer and sometimes it can be more harmful than helpful. And having the Gulf War syndrome and having fibromyalgia and being chemical sensitive I have to be more aware of my body, so I’m the only one that can tell the doctor, you know? So I would just say be in control, do your homework, try to go more natural 'cuz there are different, lots of natural ways of dealing with your pain and things like that.

Do your research. Reach out if you need help. Find a support group. Find other people who are in the same boat and share information. Share what works for you and, I don't know. I wish that I could do more. I wish that I could have, like if I had unlimited amounts of money, I would love to have a medical center that could help these Veterans, that they could come to and not have to pay for and show them that there are alternatives. There are things that can help. Even if you can't fix it 100%, if you can fix some of the other problems like being diabetic or having high blood pressure and being at risk for heart attack and stroke. If you could fix some of those things, then the other stuff doesn’t, it's not as bad. If you’ve got 10 health issues, and you can fix three of them, now you’ve only got to deal with seven. Or you can fix two more, and now you’ve only got to deal with five, and it makes it easier. But when you're overwhelmed and overloaded with numerous health issues, it makes it a lot harder. So, I would, having a center where you could educate people and help people would be just awesome. But as far as what I would tell other Veterans, it would be mostly that it's just, the only person who cares about you is you, so you have to do your own due diligence, do your own research. Don't just sit there and complain, oh, I don't feel good. Do something about it. And I do understand just how hard that is because I've been there to the point where I couldn’t do anything about it, but you’ve got to find a way, even if it's just one little teeny tiny thing. You’ve got to a find a way and do your own research and find things that work to help you help yourself.

You can’t give up. I think I’ve had—I’ve lost some war buddies already. And it really comes down to the mental game and I don’t like to lose. I know they didn’t like to lose. And I think what it really comes down to is don’t quit on yourself. You wouldn’t lay down in a fight, why lay down now? We’ve gotta keep pushin’ through, not only for prior Veterans, the Veterans that were in the Gulf, and past Veterans that are doing these other conflicts. You know, you did the time, you laid yourself open with the possibility—not too many people sign a will at 18. And for them to do that, they’re doing their part let’s make the VA do theirs. I think that’s the big thing, right? The VA needs—we stepped up when they asked. Now we’re askin’ them to step up when we ask. And I feel that they’ve got a ways to go. They got a ways to go. And it truly is—comes down to the mental side of things. You know, you can be physically broken, yeah, you get $3500, $3600 dollars a month but in today’s economy [2019] it’s—I don’t even know how these people live off a thousand dollars from Social Security who are disabled. It’s terrible. We should be taking care of those people who worked and fought and instead the system seems to kick 'em to the curb. But you can’t stop. You just gotta get up every day and do it again. That’s my hope. My hope is to be able to keep everybody just goin’ one more day and just gettin’ through it and pray and hope that the system changes, right? We didn’t ask any questions when we went but they sure have a lot of questions for us when we come home and that’s bullshit. So, that’s my big push is, you know what, fight for what’s yours, don’t give up, hang in there, find something that—there is help out there. It’s available. They’re not gonna give it to ya. You’re gonna have to fight for it like you fought the first time and that’s the big push.

Be persistent. You’ve got to be persistent, and find a doctor that you can work with. I mean I went through three doctors, before I found one that I could actually talk to. It’s important that you don’t let the system manage you, you have to manage the system. I mean that’s the best thing you can do for yourself. And don’t take the first opinion, you know if you have to, go outside, go outside the VA system to, and you know go to a doctor that doesn’t know anything about you, can’t read your whole history in one fell swoop, and have them diagnose you as well. That’s, that’s really what you have to do. The Vet Center is great because they connect to the VA. But, they don’t put all your personal notes on a damn database where everybody can read them. That’s why I went to the Vet Center. But I did not go to the VA mental health, well I did for a little while. It didn’t work out well. So, but don’t keep, you know just keep trying, that’s what I’m trying to say, I guess. Keep trying. If it doesn’t work out the first time, try again, try another avenue. Do your own research, it’ll give you something to focus on.

It's been very trying with the VA because even though if they say it's a presumptive, then all of a sudden, they say, well, it could be because of this. And I tell them straight up my family doesn’t have a history. They haven't had a history of cancer. All my siblings are still alive, and none of them have had cancer or heart problems. And even the law firm that is representing me, he said he could have smoked 100 packs of cigarettes back in the day. It's still a big difference from breathing everything from the oil fires and the burn pits and everything else that we were breathing. Right now, for my heart condition, it is sitting in Washington D.C. at the VBA. This is like the third appeal that I've processed that I've been going through. As soon as you find more evidence and bring it to them, they find another excuse why they can deny it. But I was told right now, there's legislation in congress about the burn pit particles, because they took all those years for Vietnam Vets with Agent Orange. Now they're going to do something about it with all the oil fires and the burn pits, saying yeah, if you breathe all this stuff, it does cause problems, but we'll see.

Yeah, just to go. At least open it up. I know a few of my friends, they didn’t use it for a long time, because for the most part, I think the VA probably gets a bad rap and it probably depends from city to city, the institution and stuff. You’re a Veteran. I said, you might—you’re still going to get billed, I mean, unless you have some kind of rating like I do, but for me, I’ve always received pretty good care, overall. So you might as well just at least—I mean, that’s your right. You know, you served your country, so go look into the options and stuff. And sometimes, like I did, use your outside insurance—you know, the VA will bill them and vice versa, too. Then you can use them together and stuff. And it’s always—that’s the one thing that I liked when I was working. I could always get a second opinion. I could go to my outside doctor and say—Well, they’re saying this. But now I only have the VA to rely on, so it’s kind of—you know, but yeah, I definitely use it. A lot of people don’t. And I didn’t until the point came that I didn’t have a job and needed to start going to them. But for the most part, the [city name redacted] VA has been pretty good. I mean, surgery—everybody’s friendly, the doctor has always been very knowledgeable and very professional to me.

I've seen the science. They're literally working at the molecular level, discovering things now that this disease is doing, and it's absolutely fascinating. It's what they're looking for now. I mean they're looking for the smoking gun. They're seeing all kinds of actions of what's causing chronic inflammation, including microglia in the brain. They're seeing excessive activation of that, which is looping into other things, which is looping into something else, and they're seeing all these actions. They can’t find the root cause. And that's their hope for finding a cure or a treatment is to find that root cause, and they're getting closer. And seeing the science even in the last six years, the capabilities of research have gotten so much better as far as what they can do like down to the molecular level. The better the science gets, the more they keep finding, and if they can get that smoking gun and maybe say, okay, we know what's starting this whole giant loop of inflammation, and it starts right here, we're going to stop it right here. But so far, they haven't been able to find that. But it's fascinating what they have found, and so it's hopeful. It's hopeful. The treatments so far have focused on symptoms, basically, anti-inflammatories and that kind of thing, which are treating a symptom. It's not a cure-all when the symptoms don’t go away, and the other things that go, the symptoms outside that symptom that they're treating still go on, so it's, yeah. That's where I hope we'll get. Not to mention the fact that if they could ever get that smoking gun, maybe the VA will stop fighting us, and maybe they'll actually educate the doctors on how to care for us. I don’t think there's much more I could ask for.