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So I came to the VA and said, this is what I think is going on, and I got everything from there's no such disease to it's all in your head to we don’t even know if that's real. You don’t have that disease. You have this disease. You don’t have any disease at all. It's just chronic pain, whatever that means. I've been talked down to, I've been disregarded, and I've received improper care because the doctors here flat out don’t know what they're dealing with, to the point that they refuse to even acknowledge the disease, which just blows me away because I would think the one place that I should be able to come to is the VA hospital and be treated for a service-connected disease. But instead I've been given medications that have almost killed me. I've been given misdiagnosis, mistreatments. I've been given a myriad of tests to try to find out what was going on, and they say there's nothing wrong with you because they don’t know what they're looking for. It's just extremely frustrating. And in the meantime, no improvement in my healthcare. None. I've had to forcefully manage my healthcare as much as a patient can, and in many cases I just, I don’t even ask anymore, I don’t even bother. 

So I think I began questioning when I started hearing the stories about—Soldiers are experiencing some symptoms from Gulf War. And like I said, what they were describing really fit the experience that I was having. And so at that point, I did reach out to the VA and I did go in and, as I said, I was told—No, it’s all in your head. Don’t worry about it. And same thing if I brought it up with my own doctors in the private sector. I’d say—Hey, you know, I’ve got these things, Gulf War Syndrome or whatever it’s called, and private physicians too, were saying—No, that’s all imaginary. There’s nothing there. And so on one level I dismissed it, because of being told that. On the other, I was like—What? I have these symptoms. Something’s going on. And for the longest time, it was that struggle of: Explain to me what’s going on, because these things are real. I’m not imaging the fact that I just spent the last day laying in a recliner, you know, moaning in pain. There’s something going on here. And I think when I started connecting with some other Veterans, connecting online through social media, started learning about some of the other soldiers I had deployed with in my company, is that we’re experiencing these same things. That’s when I started taking it more seriously and pushing and going to the VA and really trying to get to the bottom of it. But that was a period of several years.

Well, I had my first one, oh, years ago, but I can’t remember, I honestly don’t remember anything about that. It's totally blank, I think probably because it was fairly benign as far as my interaction. When I had, the second one that I had remains remarkable to me because of the reaction of the doctor. The first one I took, I just got a notice, I can’t remember if it was by the mail or somebody told me about it, that I should have the registry exam. And that was primarily one of those get your name into the government system in case something comes up so they know how to contact you kind of thing. The second time I came for it, it was significantly, it had to have been at least five years later, I was kind of trying to use that exam to find a doctor in this hospital that had some working knowledge of the disease, and I thought maybe that's the way to go, and instead I found exactly the opposite. The exam was pretty much a physical exam, normal physical exam. They asked a few questions about particular things, chronic pain, that kind of stuff, and then I was sent on my merry way. And obviously my goal of finding somebody in this hospital that I could deal with was wrong. Along those same lines, I'll tell you something that I did shortly thereafter is that I was so angry about not being able to get care here that I ran it up the flagpole, and I started hounding the director of the hospital. Why is this happening? Why can’t you figure this out? They shoved me, she shoved me down to the chief of staff, and they basically, and then he shoved me to a secretary who basically stonewalled me for a month after like five meetings. I had advocates on the phone from Washington, D.C., on my meetings giving her hell, and they stonewalled me the whole way. And I just finally got, I was so sick, I just had to give up. I even wrote my congressman. The director wrote a nice letter. Oh yeah, we'll start a Gulf War clinic and all this stuff. Nothing. And of course then like a month later, she was gone. So, yeah, it's not, yeah, you can see I’m getting a little emotional about it. It's very aggravating.

I’ll never forget the VA doctor was an older gentleman, and I’m telling him all these things that are going on, and he just looked at me, and said, well you look fine to me, and sent me on my way. So I didn’t go back to the VA after that, for many, many years. And then, so all this continued, year after year. I’d go to civilian doctors, and I would tell them I was sick all the time. But they never did x-rays, I think once or twice they might have done x-rays, but they never saw anything on my x-rays, and they just said, well you must have chronic bronchitis. I’d tell them I was a Gulf War Veteran, but it just continued. I think one or two of them would have me spit out the stuff I was, bringing up, and they’d send it off to the lab. But I’d never hear anything. So I just went on, year after year. 

I mean overall when there’s been something bad they’ve taken care of it. Just not in a timely manner. Like my ulcer situation, if I would have gotten scoped in October I never would have had to have surgery. And this is what the surgeon told me. He said that because it was let go for so long that’s why I had to have the surgery. But you know like I’ve had two cysts cut out of my back. One was about the size of a, a little bit smaller tennis ball, and that was under my shoulder blade. The other one was up higher on my shoulder on the other side. And it was a little bit bigger than a golf ball. You know when I told them I got this problem they, yeah they took care of it fairly quickly then. Of course, this was also after the whole fiasco with the VA kind of letting people die. And there was that—it was around the time I had my surgery for my ulcers. You know things got pretty quick then. But I don't know. I think if there was more knowledge about the Gulf War Veterans, more time spent trying to figure out why and less time just sweeping it into the big category and letting it continue, I think that would probably be the biggest thing. Because I know there’s been times when I’ve had something wrong. I've gone in and it’s been treated like, okay it’s just this, it’s just your Gulf War stuff. And then later find out no it wasn’t the Gulf War problems it’s exactly something else that needed to be fixed. 

I found somebody that knew what was going on. So that was a big relief right there. Because this whole time, you know, at the VA system, I thought I was going crazy because everything I would tell them, they’d throw it back in my face, say I was, it wasn’t so. You know, these are doctors that I’d see down there, and I’d call back to them, and I had different questions, and then they wouldn’t talk to me. They’d tell me something else. I’m telling you; it was like, it was nuts. But once I found WRIISC over there, and I knew what they told me, that they knew about it, and I knew I wasn’t crazy anymore, I knew what they were telling me. I knew it was true. But yeah, they had diagnosed me with, you know, that they knew I was involved with a chemical, they knew I had all these issues going on, with PTSD, my organs, everything, you know, they did, what was it? To check my nerves, they did a test on my nerves to, and that was a test that they knew I was involved with chemical. They took a skin sample from me, but that’s when they knew that that was involved with chemical. And for me, that opened a whole different outlook of, all right guys, what I’m talking about isn’t false anymore, it’s real.

Eventually I got a job that afforded me private health insurance, and that's when I first went to my physician, a PA, and told him I was having problems. And he did some testing, stool samples and things like that, and they couldn’t find anything wrong. I did the nerve testing up at Portland VA. Comes back normal. Well, after you do a couple times, you just stop going because you're hearing the same answers, and you start feeling like you're either a hypochondriac or they're not going to take you serious, and you're wasting everybody's time and resources. And you only have so much sick leave if you have a job that even has that, and if not, you're missing work unpaid, so it gets very expensive even to go get free healthcare. So you kind of give up on it. And it got worse. It beats you down sometimes too where you just don’t want to even talk about it anymore or deal with it, even if you have to because, again, it goes back to you feel like you're just, it's almost in your head, or they just don’t care, or they're looking at you like, really? You're back? We tested you last time, and there was nothing wrong. So you kind of give up. Yeah, It was as if somebody got off my shoulders finally. It was like finally, validation. I cried. And it was such an unburdening.

So I just went on, year after year. And then finally in ‘95, I filed with the VA, I didn’t know what else to call it, back then they didn’t really have people to really help you fill out the paperwork, but I just called it congestion. And, I filed for that, and fatigue, and depression, because I was depressed, because I was sick all the time. And, so then in 1999, they finally sent me to the Gulf War registry, and they flew me up to [the War-Related Injury and Illness Study Center—WRIISC in] New Jersey. And, I didn’t, I was never told about any of the results, except they did tell me that I had some rhonchi in my left lung, which is where I had the chest pain and all that stuff. And they did x-rays, and nothing on x-rays. But they noted that in my paperwork. So, I don't know about any of the other tests, I remember them doing, some, I think I was on a treadmill hooked up to some monitors, and maybe MRIs, something like that. But they never shared with me the results except for, my rhonchi on my left side. 

And, anyways, long story short, I got ahold of him [a GWI researcher/expert], because I was reading some of his research, when I was trying to research all of this on my own. And he said to get tested for mycoplasmas. So I told Dr. [redacted] that, and she ordered the test, and my IGG levels are very, very high for pneumoniae mycoplasma, and she doesn’t know what to make of that. I mean if that was the cause of my pneumonia, that would have been 2002, they should not be that high. But she’s ordered several sputum samples, and they never isolate anything. But that was a blood test. So I told Dr. [redacted] that, that my, now that was the only mycoplasma that she tested for, it’s probably the only thing that she could get tested through the VA, because of my pulmonary. But there’s supposed to be a bunch of mycoplasmas that you can be tested for. But he says that, Dr. [redacted] believes that these become systemic. And that’s the first thing that has made total sense to me, with all of my symptoms. I believe I have been carrying around this, from whatever exposure, whatever it was, or my immune system from all the vaccinations, I don't know, and I’ll probably never know. But I believe that this thing has been in my system all these years, and they’ve missed it. 

All the VAs are different. Some are worse than others. So, I have had, in all the doctors that I've seen, I have had one doctor through the VA who actually knew what I was talking about, made me feel like she understood what I was going through, and come to find out it was because she was a Gulf War Vet. Unfortunately, she was a temporary loan to the VA that I was at, at the time, and I got to see her maybe twice, and she got yanked out of there and put somewhere else. But she is the only one that I felt like I can talk to this person. I can explain stuff to her. She gets it. She understands where I’m coming from. And she wasn’t one of these ones who would try to say, here, you have to take this prescription.

Like you ever had an old injury, football injury, something you hurt and it come back and bother you sometimes. Like an arthritic. I’d say something, lemme see. If this, ain’t no reason for my feet to hurt, bottom of my feet to hurt. I mean just unexplainable stuff. Like I just have pains coming out of anywhere. For no reason, it ain’t even gotta be an old injury. And I don't know where it come from. I just ask, my doctor ain’t diagnosed me with fibromyalgia and I tell them I’m hurting every time she just give me more pills. I go to see her Tuesday. Every six months I go. I gave bloodwork yesterday. But I don't think she be listening to what I’m saying or ain’t trying to hear what I’m saying. She’s a fairly good doctor but some of the things I think, like I be telling her, I be about this fibromyalgia she won’t give me nothing but Naproxen for it. But I can’t take Hydrocodone or nothing like, I can’t. It gives me, it kind of makes me crazy. So she can’t give me nothing that will just relieve the pain. So it’s hard to sleep sometimes. I might get three hours of sleep a night.

I would do tests, but then I never heard back. Like, I never heard back. So, the way I would see it is no news is good news. You know? And so, if something was wrong, they'd let me know. Well, things were wrong, and they didn't let me know, and I kind of needed to know maybe that something was wrong. So, I just changed so many doctors, and maybe that was the reason that things crossed over, and maybe someone is like, well, it's been two months. They had to have let him know by then. Or the other doctor, his new doctor will let him know, and they'll go on with the treatment plan. And the new doctor says, you know, I bet he's got a treatment plan from his previous doctor, and I had no plan. So, I was given to somebody else, but then nobody else ever did anything until Angela is like, hey, whatever happened when you did these tests? I’m like, I don't know. They never got ahold of me.

But it’s been hit and miss with the VA. And it all depends on where you go. And I think it’s silly the way they treat us, because the VA is supposed to be for the Veterans. But, it’s like interhospital fighting. If you want to go here, they're trying to send you to another place. And if you go to one- like if you go to Albany and you have other stuff done at Castle Point. It’s like they got to pull teeth to get your results and stuff from one hospital system to the other, which I think is ridiculous. The VA’s supposed to be all one system. And the doctors up in Albany said the doctors in Castle Point almost killed me, because with the cancer. They said if I needed chemo radiation, I should have been getting it. But thank God, I didn't. 'Cuz they were right on top of it, up in Albany. Castle Point doesn’t do a lot of stuff. They try to farm you out to the Bronx and stuff like that. But where I live, I live in a rural way, I’m not going to the city to get treatments. It’s so hard to even get there though, get around and that. And they make it so hard on you. And then if you miss your appointments, they penalize you. I mean now Albany VA, I give them the greatest credit. I’m still here on this planet, they’ve done a good job with me. But I’ve been to other VA facilities and they're a joke. It’s like especially with the pandemic, they're making it so hard for us guys. They keep canceling our appointments. And we don’t get seen. And I’ve known a couple of people already that they kept canceling their appointments. And their illness and that got a lot worse because they weren’t being seen and properly taken care of. It’s like they’re not in the healthcare business anymore. They're doing your annual physicals by Zoom now. How can a doctor tell if there’s anything wrong with you by looking at you through a- like what we’re doing right now. That’s no way to treat somebody. And I don't know. Other then- I really have not that much more to say because it’s hit and miss with the VA. Sometimes they do the right thing and then other times they just leave you hanging.

Since they started to open up like the satellite offices it has been easier to get appointments. It has been easier to like if I need a walk-in type situation. That has been a lot easier. As far as specialists go though, well now that they’re actually starting to outsource a little bit more. It’s not as bad, but where I am it’s a little more than an hour drive to Fayetteville which is where all the specialist offices are. So I can’t just take you know take half a day and go to a specialist or take a couple hours. You know I have to take a whole day. Go down. And they try—because of that they try to do multiples at once. So you know we end up spending a whole day seeing several different offices down there. And so that’s one side that’s been a little more. When I lived closer to Salisbury everything was right there. I didn’t have to- You know it was 15 minutes away. Because that was where all the specialists were. So that was easy in that respect. But I’m like out here it’s—it is difficult to in terms of special like even x-rays. For x-rays I gotta go to the Fayetteville just to get an x-ray. So that does make it hard. And you know not everybody’s gotta like—I mean it’s difficult for me to take time off from work. Because I gotta set up a sub, I've gotta get everything planned ahead of time. And of course you know you do all that just for a 10 minute x-ray that you gotta take a whole day for that is kind of irritating.

I went to the dermatologist and they never reported back to the VA, which was weird because the whole reason I went there was because my VA primary care sent me there. But I finally had to go back to the dermatologist, get the results, and bring them back myself. There's something lacking there.

It's trying because the systems are just, you go to one VA place, it's like pulling teeth to get them to give the information to the other system. But I've been slowly but surely transferring everything up to Albany. I’m treated better there, and they don't give excuses or cancel my appointments. Even during the COVID, almost anything I need done, they'll take care of. The clinic in Castle Point kept canceling all my appointments. I haven't seen my heart doctor in over a year and a half because the only way they would do it right now is through a video chat like we're doing right now. How can you see a patient with a video chat? How can you test them for anything by looking on this? To me, that ain't seeing a doctor.

Well, and here's the thing. They changed my doctors, right, so that I didn't have him, but then when they, say I saw him in January, right? We're just going to use, we're going to say I saw him in January. Well, in May, they changed my doctor to another person, but I wouldn't be able to see them until September. Right? So, then September comes around, and they go, oh, well, we changed your doctor back, but then your next, the soonest appointment is February. See what I’m saying? Now I just jumped a whole year of not seeing anybody and just being on medication, which is, I guess, fine. I upped it on my own because I’m like, I remember him saying if it's not working, we can go up.

The guy that I had before was great. He actually even wrote me a letter in 2016. I had that and then I had a letter from my chiropractor, which a lot of people don’t think they’re doctors. But this guy was great. He did a lot of good stuff for me. But I wish I had the report. You know, like regular outside people, you could probably see the same doctor for five or 10 years and really build the thing and he could like, be your advocate and stuff. Whereas the VA, they’re constantly switching. You know? They’re putting him over here, or I’m going there, or I’m moving to another city—I mean, I understand it. I understand how it works.