Messages and Recommendations for VA Policy Makers, Providers, and Others

I would close the doors of the VA. I would issue every Veteran who comes out, whether he's a combat Vet or whether he's just a plain Vet, they would have their C&P evaluation before they left the military, they'd be evaluated, they'd be granted whatever they're going to be granted, and they're given a healthcare card. Boom. Done. And close the VA down. If I was the president or had the ability, I wouldn't even hesitate. It would happen. It would happen that quick too. I mean, too many of us have the same stories, and we get put off as we're the ones that are crybabies. And a lot of times we are. I admit that. But when you're getting the same ol' same ol', you know, squeaky wheel gets the grease. And if not, you don't get anything.

The biggest issues—the part that may be not normal to what a lot of other people are going to say is because I was Guard. We were activated, then we get done with the war, they ship us back. And we go back to an active duty base for like a couple of days. And then they ship you right back home. You’re released; you're back to your normal life. And at that time there really wasn’t any transition period. They, in my opinion didn’t do a very good job at all of explaining VA benefits or even to go to the VA. It seems like as a guardsman Reservist you’re kind of left out there on your own and nobody tells you much of anything. I am still in the Reserve. I've been in for 36 plus years, I'm still in. I didn’t know anything about the VA, and I've been in all that time. And I just think about how about somebody that’s only been five, six years how much could they know if I've been in 36 years? And nobody said two words to me about it. The issues you have, you just kind of think that there’s not anything you can do about it. You just live with it because nobody ever said anything about it. They just recently came to my, the VA came to my base and actually said something. And it kind of perked a lot of people's ears up, because they’re like this is the first time we’re hearing it. I think they probably do a decent job with the active-duty people, letting them know about the VA and what help they can get, but your Guard and Reserve I don’t think they tell us hardly anything. I had an injury while on military status as a Reservist, just fairly recently. And the Reserve side, if you’re injured you’re kind of, it’s hit and miss if they’re going to help you or not. I don’t think they did a very good job with me, and then when they were done giving me subpar treatment, they basically said we’re done with you; go to the VA. And that’s how I kind of also even got involved with the VA.

I think attitude is everything. And I’ve had some really good VA providers that were there for the right reasons and others were absolutely horrific that they shouldn’t even be part of the VA system. And choose providers carefully, examiners as well, right? I’ve had some really excellent examiners for my C&P’s. I had others that when you walked in the room you just knew that whatever you said is gonna go out the window. And you had that feeling before you even sat down, and they even asked your name. I know it’s hard to find people. I can struggle with that. But I would rather continue on with my business with limited amount of people who are there for the right reasons then to have a bunch of warm bodies that aren’t. Because when a Veteran’s going in for their first C&P and they get treated like a plague, that you’re just here for freebies. I’m not here for freebies.

Even though I didn’t go to the VA for all my issues, I still had to go yearly, to stay in the system. And I had some real, what’s the word? Some providers that even wrote things in My HealtheVet, that were totally untrue. Compensation and pension exams, totally untrue. Totally not what I told them at all. And, even did a couple of, filled out a couple forms to have those challenged, and pretty much, even made a call to the Washington, DC hotline on one of the issues. There just seems to be the people that really, really care about the Veteran, and then the people that are not open to, it’s their way, and not open to anything that, to challenge their way of thinking. I guess is the best way to put it. And I see that a lot too, on the people posting on the sites. There’s a lot of that going on, and that’s what upsets, infuriates most Veterans. They’ll say they go in there, they’ll tell them one thing, and then they’ll look in their records and it’s just something totally different. And you can’t even really challenge it, and if you do, they… For example, I contacted the Washington hotline thing, and they did what they were supposed to do, and referred it to the local VA side. And, I gave them all my updated information, when I called into the hotline. The VA took my old information, from when I was in Florida, so my number had changed, and everything. So instead of writing me and saying, we can’t get ahold of you, because they didn’t write the, they didn’t put the new information into the system. They’re going by the old information, and I know that they had it because I gave that to the hotline. They just said, we weren’t able to get ahold of you at this number, which was my old number, and your case is pretty much done. They gave me no recourse. So, it’s stuff like that, that is very frustrating. And, I think that’s the main thing, is we just want them to be understanding, and listen, and not, and make sure that they’re hearing what we’re trying to say, and not come to their own conclusion, and. So, I’ve had a lot of great VA doctors, and then not so great.

You give them stuff, and it just infuriates you, and most of us don’t feel good, and we’re under great amounts of stress. It affects your family situations. It affected my first marriage, and that didn’t end well. It affects every aspect of your life. And then, you get these letters that are just not nice. I mean they need to change that. There’s, I know from being in law enforcement, there’s an easier way to talk to people and deescalate the situation. And, they don’t seem to try to do that. Now I’ve had, some better letters coming down, in the last year. And them increasing some of my disability, but the previous letters, or the one about the respiratory? I mean there’s a trail of this stuff going back when I was still active duty and this chest pain. And, they more or less, I mean that’s still, in the works. But, more or less the way that they put it to you could be done a lot more professionally, and easy. And I just, I think that really gets to some of these guys and gals. Especially when they're in a bad place anyways, either mentally, or physically, or both. And then they get these letters, and it doesn’t need to be that way. So that’s the first thing I would change is the C&P people, and the way they write these letters.

I know the whole process for the disability and the people who were responsible for trying to figure out whether or not it’s service connected and the percentages. I don't know how that works. But maybe they can come up with a system that is more timely. And actually takes the Veterans in consideration. Because I know in the past it’s just, it’s been tooth and nail to try to get the support for the statuses that are needed. I got a friend, he was—took almost 20 years to get his disability. So. I don't know. I guess the system, try to streamline or just make it so it’s not such a hassle. Just not, you know we have to go out and get legal help to get processed properly most of the time. And we shouldn’t have to do that.

It’s so important to have a database that says that, you know, they know where you were at. They know what you did. Now they don’t know everything you did but they know enough. And that if a people within a circumference of that zone, 70% of those are having these issues, well, and if somebody comes up to you and says, hey, I’m having these issues and I was in this zone, you know, the VA should eliminate some of those barriers to say, you know what, there is a good possibility that you fit in that category. We should help figure out whether or not you really have what you have. You’re gonna have some people out there claiming things that never happened to 'em and I think that’s just the way it is in the system, whether it’s the VA or outside of the VA. But if you claim something and you’ve, or said you’ve had some of this experience, I think the VA should take a little bit of ownership in that and say, you know what, there’s people who have had this in that zone as well who are service connected, who have proven those. We should help you figure out whether or not you truly do have this by either going through the VA care, allowing them to get these testing done for free, and if they are connected, take care of 'em. If they’re not connected, then say we’re not finding a relation and until you prove otherwise, fine. But they won’t even take those first steps. They’ll say until you prove to us that you deserve this, we won’t even look at it. And I think that’s where the system needs to change because not everybody has the wherewithal to—or has the health to be able to fight through this process. And I think that’s one of the things that the VA needs to recognize and say, you know what, we know what we did to ya, or we know what we put you through, then we need to give you the benefit of the doubt to find out really are you compensating me for that or not. I think that’s the mentality that should change. They say it on paper, but they don’t do it. They say if you have an unexplained illness, you know, we’re just gonna take that for a grain of salt and pay you. It’s not what we’re asking for. We’re not asking for the payment. We’re asking for the recognition that, yes, this did happen to you and you need to be compensated for it. But you still need to have proof that that really happened to you and we’re gonna do our own testing because we know from Veterans that do really have this, what that outcome is. And if you meet that criteria, then you should be compensated for it. If you don’t, then you don’t get it. But the VA won’t even do that. I mean prove us wrong and then we’ll pay you. And that’s what’s broken.

Well, I do have a lot of health problems. I got like eight different medications I’m taking up there. Between cholesterol, high blood pressure and my biggest gripe about the way that they don’t take care of us the way they take care of post-9/11. I mean post-9/11 get way more benefits than the Gulf War. I mean we both served our time overseas, but they, if you post-9/11 it’s like you’re, they’re better than us. They get way more benefits than us in my experience. I mean it’s like post-9/11 the benefits are a lot better than we get. They a lot better. I mean they get anything. My nephew he just got out the military and they take care of them. I filed a claim for my pension as soon as I heard I couldn’t work anymore. They denied it and denied it, they deny my social security. They denied it. That’s when I was saying how people give up, I went through all that, did all that paperwork. But I know way more people that’s post-9/11 they get their disability easily. Like I say I filed for my disability three or four years ago, well it ain’t that, first time I did four years ago they denied it. I got a lawyer, they denied it. I went to the judge, they denied it. But I see all the, like my nephew he had just tendinitis in his knees or somethin’ they approved his like that. And they took, I mean you can, if I show you the paperwork I went in there to try to, why am I eligible for any benefits being prior service? You know what I mean? And I worked in the social security system for 34 years and they won’t give me any benefits. Nothin’. After serving. But some pills and a little healthcare, you know what I mean? It can get frustratin’.

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.

I see a lot of different groups and programs for post-9/11 Veterans, and different organizations, even outside the VA that focus on those groups. And, I think that’s just adds to the overall feeling of being forgotten. So maybe more programs like this, where it’s specific to Desert Shield, Desert Storm Veterans that can tell their stories.

Treat us like human beings. They all know we were exposed. Why find another excuse? Why try to pawn it off on something when they know that what we were exposed to is causing our health issues. It took them 30 years for the Vietnam Vets for Agent Orange, and it's about the same time frame for the Gulf War Vets. They know. They know. They just, like we have our own running joke, most Vets. They hope we die off, so they don't have to pay us off because they're always finding excuses. Oh, you smoked a cigarette. You smoked cigarettes at one time. That's what caused your problem, not breathing chemicals all day long.

I think the VA has really made improvements, and I think part of what you guys are doing is important to help educate the people, and the doctors, and things in the VA system, on Gulf War Illness, because I think because we’ve had Iraq, and Afghanistan since the Gulf War, we kind of get forgotten about. And I think that’s why it’s so important. What you guys are doing is allowing us to tell our stories, and almost 30 years later, we’re still in a battle to live and have any quality of life. So, I think education for them, mandatory education. Because from what I understand, we’re like the main, the Vietnam Veterans, sadly, are dying off. And we’re becoming now the older generation of Veterans and unfortunately with age, and our problems is compounding and they need to be aware of what we’re facing, and dealing with. And I believe a lot of before this movement was made to better understand Gulf War Illness, everybody just chalked it up to it’s all mental and PTSD, and those sorts of things.

A better organized VA system and more responsibility of the VA taking care of us and finally coming out admitting, look, we know we gave you nerve agent pills. We know they were experimental. We know that they gave you problems. They want—I just want 'em to admit to what they have done. I mean, you know, if they’re willing to make you stand in formation and take a pill and put in your hand and take a swig of water and watch you do that and tell you that they’re experimental pills and you can’t sue the government. You need to come back and say we’re gonna take care of you regardless of what the outcome is. Because that’s a guinea pig in my eyes. And I talked to all my buddies and they say the same thing. They just want the government to finally come out and say, look, we messed up. We gave you all experimental medications. It has caused you all, I don’t know if I can ever have kids and I got a lot of friends that away. And again, the kids they’ve had, have medical problems too. So, I just think they should admit to what they have done.

Read the damn book. Read some articles. Read some research. Avail yourself to the information that’s out there. Gain some knowledge. Be interested in what’s going on with your patients. There’s no, even, and I think I’m romanticizing what I think a doctor should be like sometimes because I thought, you know, if somebody came to me and said I have the disease, and I don’t know anything about it, and I need to treat him, I would avail myself to the literature and see if can’t figure out how I could help him, or if I can’t him, who I could refer him to. I don’t get that at all. I get the you’re crazy crap. That’s just, it’s wrong, and that needs to be fixed. It needs to change. It’s not going to change for me. It’s too late, but maybe in the next generation that has problems. But unfortunately, we’re going to have more and more Veterans because we have a war that’s been going on far too long. Maybe they’ll get the help that they need.

They really just need to be believed. I mean, that I can tell, they need to believe, they need a doctor, or the system to believe that there really could be something wrong with them, and it really could be service connected. Even if it’s been 20 years since they’ve been in the service. They aren’t, you know they aren’t lying, or trying to get over, or you know they just probably can’t work anymore, you know or they’ve gotten to a point where their body just won’t allow them to do what they need to do, and so they need help. But they need somebody to believe that, and not just, you know, including other Veterans. You know other Veterans are even, can be rude, as all get out. Well I’m not sick. Well, bully for you, well isn’t that awesome? And that has what to do with me? You know sort of thing, but yeah they just need to be believed and respected, for what they’ve given up, and whether they, you know whether they or anybody else realizes it, they’ve just given up a lot.

You know, yeah. I’d like to have some compassion, some understanding. Like, dude, I don’t understand your pain. I don’t understand your disease. I can look it up. I can get some general idea. Not much I can do about it, but at least acknowledge that I’m a human being and that I have a problem and that you don’t understand it instead of calling me an idiot. That just doesn’t make any sense to me.

Just try to be transparent. I mean, my big thing is you do these tests. Let the Veteran know what happened with it, whether it’s good or bad, because I always thought that no news is good news. Now in hindsight, I’m like, maybe they just didn’t get ahold of me. You know? Maybe they’re so busy that they just didn’t get ahold of me, which I know people fall through the cracks. It happens. You’re not supposed to, but it happens. I mean, I’m not so naive to think that everybody gets the perfect care, and everything happens how they want it to. They don’t, and people fall through the cracks. So, as they say, the squeaky wheel gets the grease, but I don’t know. I don’t like causing a big problem.

Do what you’re supposed to do. Check out different things, because there’s other places that know more things than what you guys know. Don’t be stubborn, don’t be hardheaded, because everybody’s got the ability to learn. Nobody knows everything. And as things, new things happen all the time in this world, don’t be stuck with the VA system on their own little box and say if it doesn’t fit in our box, it don’t work. They got to open themselves up to different things. Because if something doesn’t work, it’s not helping us. You know? There’s more stuff out there. But people got to be open enough to go in and try it. You know? You can pound on something if it doesn’t work over, and over, and over, what you going to get? No good. It’s not going to work. Like I said, without change, there’s no change.

Well, Gulf War Vets, we're at that age where now they just say you're getting old. You're getting old, so you have aches and pains. Don't dismiss aches and pains as just getting old because, one, I don't believe that I’m just getting old. Old enough to where I should be able to run farther than what I can. But, yeah, just don't, that would be probably the main thing. Don't dismiss things just because you think, oh, you're getting old. That's arthritis. Now arthritis turned into my back being fused together, so what am I going to do with that? There's no topical solution to take care of that. So, just, that's what I would say.

Just getting educated, because it is a real thing and it is a thing that lingers, after almost 30 years it hasn’t gone away, it’s actually gotten worse. And I think of course age, there’s certain things that progress with age and I think that the Gulf War is part of that. Because when I went to the Gulf I was in my 20s, and now I’m in my 50s so it’s made a big impact in my life. I don’t think that if I had not gotten Gulf War syndrome things would have been a lot different, so you know, yeah. But, yeah so just to educate themselves that it is a real thing, and that it does affect the families as well, so.

I think that they need to listen to their patients more, and I think that they need to expand the tools in their box. And a lot of it is not their fault. When doctors go to school, they don't get trained in nutrition, and they don't get trained in any of the alternative methods. However, many of those alternative methods have been around for thousands of years and actually do work. So, I would like to see the VA have alternative options. Medical doctors are great for acute care. If you're in an accident or there's some kind of emergency, they are wonderful. They know how to fix it. If they can fix it, they'll fix it. But long-term, sometimes lifestyle choice, illnesses, or things like this where there's no definitive, you know, this is what caused it, and here, this is what we do to fix it, those kind of things they're not very good with. They don't have training in nutrition to help people get away from their high blood pressure and their high cholesterol and their diabetes and their obesity. They don't have those tools in the box. Things like the hyperbaric oxygen. They do have acupuncture. I had one VA that I talked to, one doctor, and I said I found out that you could actually get acupuncture through the VA, and they said okay. Well, we'll give you a referral to a VA doctor at a different VA. They had an acupuncturist there. And I called them to find out if they would get me an appointment, and the acupuncture doctor said to me, well, what do you want this for? And I said, well, I want it for the fibromyalgia to try to help manage the pain. And he said to me, well, I don't think it will help with that, but you can come on in if you want. Okay. Uh, no. If the doctor doesn’t think he can help me, then he's not much of a doctor to me, in my mind. Again, that's another thing with the VA where I’m much better doing my own research and going on my own to find somebody than I am to try to use doctors like that through the VA system. It's not practical, and it just doesn’t make sense to me. So, I would like to see the VA more open to alternative and be able to offer more alternatives. Some people need prescription meds. Some people don't. Have the options available. Learn more about other modalities and incorporate that into practice. Why doesn’t the VA have a naturopathic doctor on staff? What's wrong with that? Why isn't that recognized? There are numerous ways to help people that don't include handing them prescription meds.

It’d be great if the VA were more, I understand that they're being more open towards different treatments, and stuff. I know a lot of Veterans are using different things, and the VA’s become more accepting and open like for the Veterans that do use cannabis, and those kind of things. because it really helps some of them. And, I know a lot of them are using Kratom, and I mean, whatever we need to do that’s legal. I mean I understand the laws, I was in law enforcement for so many years, I understand the laws and if it’s illegal somewhere then it’s illegal. But for those things that are legal, if it helps us, and our quality of life, then it should be supported. Because there’s enough Veterans that are giving up for many different reasons. But I think these things that help them should be supported.