Heather

What they write in those denial letters would push anybody, it really, really horrible things. I mean they pretty much called me a liar, and said that, 'cuz they couldn’t find the information, and it was the VA that sent me up to New Jersey Gulf War center [War-related Illnes and Injury Study Center, or WRIISC]. And they, in my denial they said, we have no record of it, pretty much saying, insufficient evidence to show that you’re, I mean more or less to me it said you’re lying. And I have the paperwork, I went up there, it’s a VA center, so you know. But they don’t say it nicely. So, and I still get angry when I think about some of the things they wrote in these denial letters. Here’s an example. My glands were swelling all the time, it’s called cervical adenopathy. It probably was a male evaluator because he wrote in my denial letter, that my cervix is fine. I have that. Now, come on. That was in the mid to late 90s. And I thought, you know you give them stuff, and it just infuriates you, and you know most of us don’t feel good, and we’re under great amounts of stress. It affects your family situations, you know. It affected my first marriage, and that didn’t end well. It affects every aspect of your life. And then, you know you get these letters that are just not nice. I mean they need to change that.

Well I know that’s difficult. I was just talking to a wife of another Gulf War Vet that is struggling, and she says, it’s really difficult. And just try to be patient, and understanding, and especially with these medications. I didn’t really realize how bad these medications can affect a person’s mental state. And, it’s important for family members to monitor that. And so, I know my husband is very involved now, in my medication because of, the whole gabapentin thing. Because I just wasn’t my normal self, and I think that’s important. And they need to maybe get on some of these Gulf War sites, where you have Gulf War Veterans, because a lot of times they’ll allow the family members. And, they can see that, what the other Veterans are going through, and it’s not just their loved one, there’s a bunch of us that are having all kinds of issues. So, I think that’s the main thing, I would say, is just try to be supportive, and try to get involved in their care, and try to understand what it is. because I think that’s important, because it is so complicated. I mean our war wasn’t so much casualties on the battlefield, it’s post-war casualties, and illness, and all the things that come with it. So, I think it’s important for them to understand that.

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.

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.

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.

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.

Well I feel like there’s a, I don’t feel like God allows us to go through stuff for no reason. There’s a plan, a purpose. And I’m always trying to figure out what my plan or purpose was. So, when I started making the hiking sticks, it gave me a purpose. But now that’s kind of been taken away again. So, now I’m back, okay, now what? So I think what keeps me going is just continuing to try to find the purpose in it all, and that’s where some of the poetries come out, and stuff. Other than that, I know that this isn’t all there is, that after I leave here, I’m going to go to a place that there is no pain, or suffering, and I have that hope. That it’s going to get better, down the road, whenever God deems it’s my time. But, it’s just trying to keep that hope alive and during the hard days, where it’s just like, that’s what I always go back to. And I always have my mom here who is a woman of faith, and always reminds me, even when I start to forget, so. I’m right in that middle ground right now, just like I said the hiking sticks was really my way to give back, and I don't know if I’m going to be able to continue doing that.

Yeah, there’s a gym locally, at the Indian Reservation, and I’m a member of it. But it’s trying, I mean sometimes just getting out of bed is a big thing. So to get myself up and to the gym is, not something I can do frequently. And believe me it’s on my mind because I mean I’ve always been very muscular, and I’m getting flabby now, and I hate it. But I just don’t have it in me. And if I do feel up to doing something, I walk the dogs, and for a little bit I was, my husband was helping me with the hiking sticks, and then I’d put the metals on him, and send them out. And that was really giving me a lot to look forward, and I haven’t been able to do that for a while.

I was just trying to find an answer or help to where I could continue working, because everything was getting worse. My respiratory, my pain, my chronic fatigue. And at the point in time, at that point I had about six years left before I could actually retire, not by age of course, because I’m not even [age redacted] yet, but years of service. I wanted to make those six years. I was a Sergeant, I had a great position. But, the fatigue and everything was really making my job hard, because I had to write these very in-depth reports. And, my brain just was shutting down from the fatigue, and then the coughing all the time. So, in April of 2017, I told my Commander and the Sherriff that I was going to have to retire. They were willing to keep me on and kind of just seclude me away, and give me some kind of a job where I could just kind of limp through the next few years, but I couldn’t get out of bed to even get to work anymore. I mean I had a, like a nine to five job, and I couldn’t get up anymore. And prior to this position, that I’m talking about, I was still on the road, as a supervisor, over other cops and my whole life I’ve been hard charger, this was totally out of character for me. But I lived in my work area. And I was so fatigued, and I just, I would go home and lay down in my bed in my uniform and put my radio on the end table and just lay there and wait, until I was needed. But, you would have never caught me doing that, all the years. By that time, I had 24 years in, and, it just, I was just going downhill.

It’s gotten a lot worse over the last couple of years. I get very, my body and brain cannot handle too much. So I don’t do a whole lot of stuff. I even get overwhelmed going to the store. A lot of times I’ll cancel my VA appointments, 'cuz of the thought of, my husband will take me a lot of times. And now that my mom’s here, you know she’ll help. But it’s very overwhelming for me to venture out sometimes, and this helps a lot, and it doesn’t impair, you know my ability to, if I have to drive or something, it doesn’t work that way. But it does help me be more alert, but even with that, I feel overloaded and when I get like that I can’t even watch TV or even look at my phone on and follow Facebook 'cuz it’s like overstimulation, but. And it’s the same thing that happens if I try to overdo it physically.

But it was early on, 'cuz I didn’t want to have children because of it. And, there are a lot of stories of people that served, just one person that you know in the couple that was over there, and the kids coming out with problems, and the fact that my ex-husband and I were both over there. I was scared to have children. So we didn’t, and then I just got you know older and you know I’m fine with it now. But that was, initially why we didn’t have children, 'cuz I was very sick. And that was pretty early on. So I’m thinking probably ’93, at least, if not before. That I thought, this you know this has all got to be, part of this, what I thought just a compromised immune system, 'cuz I just always sick. If somebody had a cold, I got it, but I always got it a lot worse. And, I think after you know going into the first year returning, you know after that point you kinda think, okay well this isn’t just, I’m really fatigued from deployment now, 'cuz now it’s a year later and you know my glands are still swelling, and my cough’s still there, and you know. I think it finally hits you.

I came down with pneumonia in my left lung, same lung. And that finally you know they saw, I went to the ER, and they saw the pneumonia in my left lung. And, gave me the antibiotics, and bedrest, and all that stuff. And, just I finally got over that, when the sniper academy started. So I was able to go to that. But, just the same stuff, chronic fatigue, coughing, bringing up the stuff, the pain, that I had way back when we first got back in my shoulder, below my shoulder blades or under the area of the shoulder blades, the neck. All these things just continued, and I finally went back to the VA, in probably maybe 2004, and I told the doctor at that time that, I’m bringing up all this stuff, all the time, nobody seems to know what it is, what can be done about it. And then she put me on Asmanex. And so the Asmanex, I guess cut back on the inflammation in the lungs, so I stopped bringing as much stuff up. It was really, really reduced. But they never did anything more than x-rays except for the time that I had pneumonia nothing ever showed up on the x-rays. So, this continues and I had several sick days throughout the year, but I was a good cop and they knew I had served. And so they were always understanding of that. But it was usually respiratory related stuff and fatigue. 

Under pressure and stress I was losing my ability to remember all that stuff. So I would say about the time I hit 45, is where the real big changes started to take place. And I felt, instead of gradually declining, I just felt like I was nosediving. And I don't know if it’s the age factor, or, I’ve read some stuff about oxidative stress, and I was always trying to push my body to stay in shape, and maybe the oxidative stress. I’ve taken so many different things to try to, spent money on different things trying to help with all those issues that different things claim. I mean we did MonaVie, we did Kombucha before it was ever sold in the grocery stores, my mom had me fermenting it. Anything to try to help me, 25 years ago. There was another one I spent a bunch of money on. I tried CBD, I’ve tried the stuff, this is like a sixty dollar bottle, CBD, I even tried THC tincture. I don’t have good results with any of that. I’m on CoQ10, turmeric, I mean if it’s out there, and it says it helps any of that stuff I’ve tried it. And, so May of this year I started this kratom and it’s been a lifesaver for me. It, if I hadn’t had this stuff, you guys would probably be up in the bedroom talking to me, while I was in bed because I literally can’t do anything. I just don’t have it in me to get up and do anything, fatigue wise, and pain wise. But this stuff really, really helped. I have a nerve pain that’s been going on in my arm, that it doesn’t help. So the doctors have been trying to give me different medications for that, and they had me on some gabapentin. Bad combination. It wasn’t good for me. So I just got off of that. And I’m on a new one, that seems to be helping. And I’m sleeping better, and this pain isn’t keeping me up. But this stuff works on all the muscle, I mean it keeps it at bay, I mean it’s still always there. I’ve been diagnosed with fibromyalgia, severe fibromyalgia, severe chronic fatigue.

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. 

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. 

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. 

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.