Peter

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.

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.

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.

And I've been dealing with the VA in various forms to get better with that, but the biggest, without a doubt, the biggest help has been the service dog, unequivocally. Without him, I wouldn't be breathing. There's no way. He changed my life significantly. I dealt with, when I got him, I was in really deep dark depression. I mean it was bad. I wouldn't leave the house for weeks. Yeah, it was bad. Ever since I've gotten him, I’m off antidepressants, off antianxiety pills, my meds, and I actually leave the house now. I have headaches that will drop a horse. Sometimes they come on instantly, which he can detect somehow. He'll give me about 20 minutes' warning. He [service dog] did that, he learned it on his own. Other times it's just kind of a slow-onset migraine that's kind of a normal migraine, which he doesn’t smell. Sarge, heel. Hey. Heel. He wants a bribe. Dogs know how to work people really well, even well‑trained ones like this.

The camaraderie with my fellow Gulf War Veterans gives me some strength. Not all of them, but there's been a cadre of us that have tried to stand up and make things better for the whole. I've pounded the halls of congress more than once. Every year, the letter comes out that there's a congressman saying we need to fund the Gulf War research, and I’m either in Washington, happened to be when I was back there this last year for treatment, or I’m on the phone with congressmen and senators, begging them to please fund the research. Please sign on to this research funding. And I’m proud to say that since I started contacting the Oregon senators, every year, both Oregon senators have signed on for Gulf War research funding. Very proud of that because they're the only two, only state with both senators consistently signing on. So I’m really proud of that. I’m proud of my effort.

Yeah, I had to quit working. I was a chef, which is a tremendously physically demanding job, and I was getting to the point where I was coming in, and I was literally just having to go sit down in a chair in the back of the dining room before we opened, and I would just fall asleep. Fatigue was hitting me hard. I would be so physically sore, and my gut would be acting up so much that I couldn’t stay. I had to start leaving work all the time, so eventually I just had to stop working. It's just like I just have no energy. The desire is there. It feels like I’m wearing a lead suit, and I just can’t move. It's horrible. 

Muscle spasms can be so bad. For example, I was in the shower just a few days ago, and I reached around to wash the small of my back, and all of the muscles on this side decided to just cramp up all at once, and I could
hardly breathe. I had to shut the shower off and get out wet and dripping and ended up laying on the floor trying to get the muscles to relax again…. It was horrible. And that's a regular thing. I have the chronic pain. I now am sensitized to pain, so bumping my elbow against the door just sends massive amounts of pain shooting up my arm, which is an unfortunate side effect of chronic pain. 

It's affected, yeah, I had to quit working. I was a chef, which is tremendously physically a demanding job, and I was getting to the point where I was coming in, and I was literally just having to go sit down in a chair in the back of the dining room before we opened, and I would just fall asleep. Fatigue was hitting me hard. I would be so physically sore, and my gut would be acting up so much that I couldn’t stay. I had to start leaving work all the time, so eventually I just had to stop working. It's just like I just have no energy. The desire is there. It feels like I’m wearing a lead suit, and I just can’t move. It's horrible.

The IBS, like I said, has kept me home for many a things. I can’t tell you how many concert tickets or basketball game tickets I've bought and wasted because I couldn’t go, and that's just really frustrating. Something as simple as going to the grocery store. I could feel fine and get in the middle of the grocery store, and my gut says, no, now's a good time, and just put me in knots. And if the diarrhea comes, I’m just dying to find a bathroom. And if I can't, it's just so painful. I mean it's like curl up on the floor painful. Migraines are another thing that limits me. I mean, forget it. I get a migraine, I've learned that I don’t care what it is. I’m not moving. I’m sitting in a dark room, and I’m downing triptans until this headache goes away. I had a headache once that last for 30 days, and it was brutal. I mean brutal. So, I get a headache, that's my number one priority is doing everything in my power to abort that headache. And if that means going into bed and laying down in the middle of the day and hoping that I can fall asleep and it will break the cycle, that's what I do. So when that happens, yeah, that's completely stopping everything. The inflammation, the chronic pain from the inflammation, that limits me. That was really bad this summer. I mean I love to go camping in the summer to get out of the house. It's peaceful, and it's just a good time for him to just be a dog. And there were times last summer that I would get out to camp, and it was just like I couldn’t walk, so we'd sit there in the chair, and he's looking at me like, what are we doing? Let's go do something. There's a lake. Let's go swimming. I was like, I can’t walk, dude.

Mentally, I've tried every CBT and acceptance and commitment therapy that you can name off. I went through a really good class here. The therapist is no longer here. I can’t remember his name. It was like a 16-week program for dealing with chronic pain, and it absolutely was probably the single best therapy that I've encountered for dealing with chronic pain. And it basically was an acceptance kind of thing, but it wasn't here's some papers, and I’m going to lecture you for 20 minutes, and you go home and feel no pain. We actually worked at it for three months. It was, and there were other Veterans there that were in chronic pain. We opened up to each other, and it was like, okay, I’m not crazy. It was just fantastic. The biggest thing that has helped me with that. (Referring to service animal) So he not only helped me with depression and PTSD, he helps me with pain. He helps me with nightmares. I take prazosin, so I don’t actually always know when I’m having a nightmare until I wake up and he's laying on me, so I've obviously been thrashing around.

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. 

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.

Well, some of the preventative kind of things. Taking CoQ10. Taking Theracurmin. Taking a vitamin regimen. A thing that I tried last March, which was somewhat beneficial, which I haven't been able to continue because of my gut problems, is a diet that was developed by a researcher at American University in Washington, D.C., that essentially eliminated glutamate because glutamate is a neuroactive substance, and that's the problem that is endemic. So I went through this diet program where I eliminated all processed foods. I eliminated certain types of other types of foods, basically eating a fresh diet, and that really helped. Some things that, like I had a three- or four-week period that the burning of my feet went away. Then I just couldn’t eat that way anymore because I can’t eat vegetables. It's horrible. And that's what I was, like, that was my main thing. I used to eat like a Mediterranean style. My mom was Lebanese. I grew up eating, meat was not the center of the meal. It was vegetables, grains, and that's the way I like to eat. Lots of vegetables, big salad, and a little piece of meat, and I’m happy. I can’t eat that way anymore, and I’m putting on weight, and I’m not happy with that at all.

One of the things that, one of the best treatments that I could get, but I can’t afford it and the VA won't pay for it because they don’t recognize it as valid, is massage therapy. That's probably the number one pain reliever when my muscles are going crazy, which is all the time. I do lots and lots and lots of heat and cold. Lots of, almost every night I start a cold-water bath on my feet. Little thing that warms up really slowly, so by the time it finally gets warm, my water bath has gone from cold to warm, and it feels really good. Doesn’t really seem to really help the inflammation, but it's sure nice to do. I can’t think of any other treatments offhand. I just went through a tai chi program. That was pretty good. That blew me away. I was real skeptical when I went in. That's pretty neat stuff. Mentally, I've tried every CBT and acceptance and commitment therapy that you can name off. I went through a really good class here. The therapist is no longer here. I can’t remember his name. It was like a 16-week program for dealing with chronic pain, and it absolutely was probably the single best therapy that I've encountered for dealing with chronic pain. And it basically was an acceptance kind of thing, but it wasn't here's some papers, and I’m going to lecture you for 20 minutes, and you go home and feel no pain. We actually worked at it for three months. It was, and there were other Veterans there that were in chronic pain. We opened up to each other, and it was like, okay, I’m not crazy. It was just fantastic. The biggest thing that has helped me with that.

Because of my illness, I have a myriad of pharmaceutical interaction problems. The VA calls them drug allergies. The Gulf War Illness expert that I know in Georgetown University says that I’m probably not allergic. They're actually overdosing me because they're not taking into account my neuroinflammation and degradation, which makes sense when you see the list of the meds that are all acting on my nervous system that are ones that I haven't been able to tolerate.