Shawn
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Shawn was enlisted in the Army for nearly five years, during which, he deployed twice to the Persian Gulf in 1994 and 1995. Growing up, Shawn was a “very healthy kid” and remained healthy through both deployments. During his deployment, he worked in intelligence with computers, “in an airconditioned building in the middle of the desert” for 15-16 hours every other day. While his schedule led to an irregular sleep schedule and he missed his family, he was not “afraid that we were going to get shot.” When he was not working, he and others from his unit explored the marketplaces.
Shawn first “started getting really sick right toward the end of my enlistment” when he returned home from his second tour in the Gulf. Initially he experienced chronic diarrhea, struggle which he kept to himself for years. He was also being seen at VA for knee and should issues. Soon thereafter, he was employed and had private insurance. Despite having stool samples taken, his medical providers could not identify a cause of his chronic bowl distress. At that time, nerve pain in his shoulders, arms and extremities were “flaring up” with no conclusive diagnostic tests as to the cause. In the early 2000’s “the headaches started really getting worse where they became more, I’d say, debilitating where I couldn’t get out of bed some days. So, I was sicker than I've ever been sick. Kidney stones flared up.” The combination of all these symptoms has made it difficult for Shawn to retain a permanent job.
The healthcare road has been frustrating for Shawn with inconclusive diagnostic tests being particularly disheartening, “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.” He has tried various dietary changes such as lactose free, elimination of gluten, red meat, and refined sugars. He has also received cortisone shots and several surgeries for his shoulder and knee issues, which “helped, but did not fit it.” He has also tried several types of medications to manage nerve and joint pain, headaches, and other symptoms, though has not remained on any medication for too long due to lack of effectiveness, fear of addiction or terrible side effects such as suicidal thoughts.
After many years, Shawn was referred to the New Jersey War Related Illness and Injury Center (WRIISC), which “awesome” as it was “the first time someone acknowledged my Gulf War Illness.” Since going to the WRIISC, he has found several of their recommendations such as physical therapy, meeting with a mental health counselor, stretching and a VA nutrition class all to be helpful in maintaining his day-to-day well-being. In addition, they recommended a service dog to help manage his PTSD. At the time of the interview, Shawn was bonding with his relatively new service dog, “Sergeant.” Shawn finds meaning in being a coach for kids’ sports, helping others, and doing yard work.
Shawn knows that there are many answers he will never get but is grateful to the War Related Illness and Injury Study Center (WRIISC) for clearing up some questions.
Shawn knows that there are many answers he will never get but is grateful to the War Related Illness and Injury Study Center (WRIISC) for clearing up some questions.
I can’t emphasize enough how much WRIISC was beneficial. So many questions were answered, or I was given tools to find a lot of the answers. It still seems like they have no idea of whether I’m Gulf War related or not. We'll never know. I know we'll never know what exactly was in my shots because they're gone. And even what they wrote down doesn’t mean what I actually received. If it was bad, it wasn’t written down that they were bad, so there are answers I expect I will never get. But, yeah, I just wish we knew why my nerves do what they do and what's causing what's going on in my head, and I think the nerve stuff is what causes the IBS because it's the overactive stimulation of nerves. And my shoulders and knees I don’t think are related at all to Gulf War, so what's going on with my nerves and what caused it. That's what I’d like to know.
Shawn recommends Veterans document and keep track of everything they do in the military and with medical care.
Shawn recommends Veterans document and keep track of everything they do in the military and with medical care.
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.
Shawn is grateful the WRIISC recommended a service dog for his PTSD.
Shawn is grateful the WRIISC recommended a service dog for his PTSD.
I worked in mental health. Very dedicated people, amazing people. And you see people like anywhere that care about you, that listen, or at least pretend to, and you see the people that don’t have the time of day for you. And, like I've said, after all the visits I've made, and you start feeling like you're wasting their time, or you're not being taken serious or whatever, I go down there, and of course I cannot imagine that any government agency could operate the way they do on a full-time basis because of the expense because they were dedicated to me. Not another patient coming in 15 minutes later. So I get that we can’t live like that on a full-time basis, but it was amazing that they listened to everything, much like you're doing now. Everything I had to say on the subject. Met with counselors and physicians and a dietician, and yoga was introduced. So they're looking at suggestions for you to help with pain, your diet, but the whole spectrum of the healthcare, so that was great. That was the first time, and I don’t want to get people in trouble, but that was first time that somebody basically acknowledged Gulf War Illness, that my symptoms fit it. And of course I just spoke with one of the doctors last week, and she said we can’t diagnose, so that's why it's not written in your records that way, but they're actually also the ones that said, they recommended a service dog for PTSD. So it was, I don’t know, it was emotional talking about everything, talking about other issues that are not health related like we're talking about today. I would recommend that for anybody. In a way, it's too bad we can’t do a smaller version of that for Veterans when they first get out. It might help steer us to the proper care sooner.
Shawn started a youth sports nonprofit in his community.
Shawn started a youth sports nonprofit in his community.
I want to work. I've actually started a youth program, nonprofit youth program, and I’m trying to get it going with summer camps and sports programs. I was asked if I would be willing to start it with the support of the community I live in because they had nothing. But I love that kind of thing. I volunteer. I've coached over 60 teams. I love charity work and volunteer.
Out-processing was lacking, Shawn recalls.
Out-processing was lacking, Shawn recalls.
So, coming back from the Gulf, basically when you're over there, you give them your badge, and they give you some kind of certificate everybody signed, and they say good luck, and you know when you get on the plane. There's no out-processing other than 10 minutes' worth. So there's no debriefing or any physical exam over there or anything. When I came back, you're right back to work like you were at work last week. Everything is on the fly. Getting ready to get out of the service, they have some meetings you go to and stuff like that, just checklists, and they do that. Okay, this is your final chance. Is there anything wrong with you type thing. Well, any upset stomachs and stuff. No, there wasn’t wrong with me because I didn’t think it was going to carry on. My knees and my shoulders were the big issues, and [coughs], excuse me, and so you fill out that form. There was a three-day, they call it TAPS, Transition Assistance Program or something, and that was a lot of civilian people coming in, telling us how to get ready to get a job in the civilian world, not how to un-process from the military, that’s something I've always felt was lacking.
Shawn struggled to find healthy hobbies when he retreated into solitude.
Shawn struggled to find healthy hobbies when he retreated into solitude.
And then you withdraw. Then it goes back to what I said earlier about the mental health aspect, and now you're alone and lonely and withdrawing from society, even though I force myself to do something with people. It's like, okay, I've got to go home. I've got to get back in my cocoon of whatever. And I love outdoor work. I love yardwork. I love things like that, but you just sit on the couch and don’t, you don’t want to move. You don’t want to think. You don’t want to feel pain, so you do anything to take your mind off that, and it helps. You don’t feel bad because you're either not moving and using that joint, or you found a substitute of overeating ice cream or a candy bar or video game has taken your mind off it for a minute or something, but they're all unhealthy.
Shawn’s physical health problems ended up affecting his mental health, as he struggled with guilt about missing work.
Shawn’s physical health problems ended up affecting his mental health, as he struggled with guilt about missing work.
And you start doubting yourself, and you feel embarrassed to talk about it. And not only the IBS, but you feel, why am I always sick? And I want to work. I've actually started a youth program, nonprofit youth program, and I’m trying to get it going with summer camps and sports programs. I was asked if I would be willing to start it with the support of the community I live in because they had nothing. But I love that kind of thing. I volunteer. I've coached over 60 teams. I love charity work and volunteer, but I also need a paycheck, and the disability rating is not enough to really do anything more than exist. I’m thankful for it, but I come from generations of business owners. I’m the first person in my family not to own a business. Where most people talk about they're the first generation to go to college, I’m kind of the opposite. I went to college. I was the first one to have a bachelor's degree, but I was also the first one not to have a business. And growing up with that, my grandparents, three of them are still alive today, I saw how much work they put in. And they were small businesses, and I appreciate that if somebody calls out sick, that doesn’t mean their work sits for a day. It means everybody else works harder. So, yeah, even if I've had sick leave, like when I worked for the VA. If I missed a day of work, I came back, and there's was a lot more work. But also somebody had to do my job while I was gone. And so I’m feeling guilty. Do I go and apply for a job, and I know the Disability Act will cover me to an extent as long as I can safely do the job, but at the same time, the burden I’m going to put on somebody. What can I do that I’m going to be close enough to a restroom if I have that? What do I do if it's a small crew, and I wake up, and I have these headaches? I can’t get out of bed. So you really, the depression weighs more and more. And then people see you and like, what's wrong? You're in a bad mood. No, I just don’t feel good, and it becomes your life. And some of it's my own doing because, again, you go back to either being embarrassed or nobody wants to hear everything. People ask, how's your day? They really want to hear good. How is yours? Good, and go about. So if you're really having a lousy day, I don’t feel well, they don’t want to know why. Or you at least think they don’t want to know why, so you're left that doubt. What are they thinking about you and why you're not doing a very good job today? So, yeah. But all these physical health problems end up becoming a mental health problem. Anxiety. Not wanting to leave home. Being afraid to go out and look for something that's going to make a good paycheck. When I left the post office in 2000, I hadn’t had my knee surgeries yet. I could barely walk. I walk taking codeine and stuff, prescribed, to get through it, and then I couldn’t drive. Well, deliver mail, you drive most the time, so to handle the pain in my knees and to be able to walk, I couldn’t drive. It was really hard to do my job.
Pain and IBS influenced Shawn’s ability to participate in hobbies and activities, including coaching.
Pain and IBS influenced Shawn’s ability to participate in hobbies and activities, including coaching.
It does make it difficult, though, to coach some things when you can’t do it. And I’m not talking about slamming the ball down or running a mile in four or five minutes, but just, you can’t even demonstrate the form or the technique because of pain. Or, in the case of the IBS and the nerves, some days you really can’t even stand up. I've sat on the bench just in pain, and you just, you're not going to burden the kids with it, like, how come you're not coaching? I am. Just go out there and do your best, and you're just gritting your teeth, and it makes it hard for sure, but it limits what you can do. I've tried to put myself in a position. I talked to an athletic director at a college in New England a year and a half ago about the possibility of coaching for their school, and he said I have the qualifications. I have the degree. I have the coaching experience and everything, but how could I with what limits me? It would be real tough, and that's kind of my dream. So, I mean we all have things that limit our dreams. That's what I find joy in doing, and then yard work. I've always been somebody that liked working in the yard, although the good thing about that, you can put it off till tomorrow. Still, there are things you need to do today with any job or with any hobby. So, those things keep me sane, but they're difficult doing sometimes. I could sing, but then everybody else would be at the hospital.
Shawn’s physical health caused him to withdraw socially.
Shawn’s physical health caused him to withdraw socially.
People ask, how's your day? They really want to hear good. How is yours? Good, and go about. So if you're really having a lousy day, I don’t feel well, they don’t want to know why. Or you at least think they don’t want to know why, so you're left that doubt. What are they thinking about you and why you're not doing a very good job today? So, yeah. But all these physical health problems end up becoming a mental health problem. Anxiety. Not wanting to leave home. Try to not focus on it, but then you become a prisoner in your home because you, like I said, you don’t want to go out there. You feel like garbage, and you start not wanting to deal with questions or anything why you don’t feel well. I mean, it's amazing what people will ask you, personal questions. People pry all the time, and there's just certain things I don’t want to talk about. I have a hard time telling you I have IBS and diarrhea, and that's something everybody deals with at some time or another probably. I don’t tell my mom. I don’t tell my sister. I don’t want to tell my girlfriend. That's the least attractive sexual quality a person can have, to know they're on the toilet. So, these are very personal, and then you withdraw. Then it goes back to what I said earlier about the mental health aspect, and now you're alone and lonely and withdrawing from society, even though I force myself to do something with people. It's like, okay, I've got to go home. I've got to get back in my cocoon of whatever.
Shawn has found it difficult to have good relationships since he has had PTSD and health effects from GWI.
Shawn has found it difficult to have good relationships since he has had PTSD and health effects from GWI.
And then people see you and like, what's wrong? You're in a bad mood. No, I just don’t feel good, and it becomes your life. And then you get that negative feedback from the girlfriend or from other people and like and unfortunately, I’m somebody that really worries too much about what other people think, so that makes it even worse… But I don’t know if they’re fully to blame. I know they're not fully to blame through PTSD, but I think that's been hard to have a good relationship. No violence or anything like that, but, yeah. And, like I said, that one girlfriend I had who didn’t believe that I was feeling bad, so it's been kind of hard to have a good relationship I guess, even though I’m always told I’m a nice guy. The kids always like me and everything else. I've been single for 20 years.
Shawn has dealt with loved ones telling him it was all in his head.
Shawn has dealt with loved ones telling him it was all in his head.
Unfortunately, I had chosen a bad relationship in New Hampshire with a healthcare worker who denied my sickness and denied that my shoulder was a problem, and when I had surgery, she didn’t say a word. It's like she said I was making it up for 20 years. She goes, it's all in your head. And not only that, makes you feel like you must be lying. It really must be in my head. Here's a healthcare worker who's not VA but who is telling me there's no way possible that they haven't done something all these years. And you start doubting yourself, and you feel embarrassed to talk about it. And not only the IBS, but you feel, why am I always sick?
Shawn experiences “weird” nerve sensations like electrical zaps and warm spots.
Shawn experiences “weird” nerve sensations like electrical zaps and warm spots.
Along with the headaches that started flaring up, a lot more nerve pain. Where before when I first got out it had been isolated, pretty much my hands, the nerve pain now will just hit me, and I've had the weirdest sensations. It actually felt like an electrical, like I just can picture a lightning bolt like the ones you draw, zigzag kind of like that going through the middle of my head. It's not a headache. It feels like it's literally in the middle of my brain. I get these sensations on my extremities, and they tend to be the same. How it feels in one spot, it always feels the same on that spot, but a different spot will be different. I get, on my right shin, I get a heat sensation. It feels like there's a heater right next to my leg. It doesn’t burn, but it's very warm. My left side, I have two general spots where it feels like I've got a rash, where it hurts even with clothing to touch it, and it will flare up. There's no rash. There's no sign. No swelling. It usually lasts for about a week or so. It actually hurts to walk when that's going on, and then it goes away. And I'll get, all of a sudden I'll start feeling like I’m getting stung by bees.
Shawn reflects on letting depression and guilt send him into a dark spiral.
Shawn reflects on letting depression and guilt send him into a dark spiral.
So yeah, even if I've had sick leave, like when I worked for the VA. If I missed a day of work, I came back, and there's was a lot more work. But also somebody had to do my job while I was gone. And so I’m feeling guilty. Do I go and apply for a job, and I know the Disability Act will cover me to an extent as long as I can safely do the job, but at the same time, the burden I’m going to put on somebody. What can I do that I’m going to be close enough to a restroom if I have that? What do I do if it's a small crew, and I wake up, and I have these headaches? I can’t get out of bed. So you really, the depression weighs more and more. And then people see you and like, what's wrong? You're in a bad mood. No, I just don’t feel good, and it becomes your life. And then you get that negative feedback from the girlfriend or from other people and like and unfortunately, I’m somebody that really worries too much about what other people think, so that makes it even worse.
Shawn tried elimination diets and nutrition education to ease his IBS symptoms.
Shawn tried elimination diets and nutrition education to ease his IBS symptoms.
And he did some testing, stool samples and things like that, and they couldn’t find anything wrong. I then went back to the VA to address it, I don’t know how many years later, and first thing they said was you're probably lactose intolerant. Okay, so that's an easy fix. You reduce your lactose. Try to eliminate it wherever you can. And I did notice there were certain foods that really bothered me that were dairy, and other dairy foods didn’t seem to. And there were some workarounds you do. When I wanted to eat pizza, I discovered if I microwaved it, I was okay. If I didn’t, it make me sick. Makes you wonder about microwaves. But, so you do the workarounds and stuff, but then you realize that taking the pills to help offset those things, cutting your diet, I mean I did elimination diets of gluten, of red meat, of refined sugars, of carbs. You name it, I eliminate it for at least 30 days. Nothing was helping. So there were flare-ups, there were things that could help, but nothing eliminated it…Other stuff, there’s a nutrition class here offered at the VA in Roseburg that was 10 weeks or something like that, and I went to all but one of those. Missed one to go get him. I have studied nutrition. I’m coaching in college and little kids. I know this stuff, but it's nice to get refreshed, to be reminded or to learn that there's new tools, especially on our phones now to make it much easier to check out calories and the fat and the carbs and vitamins and nutrients and stuff. So, for me, it wasn’t like I was learning brand-new things, but, yeah, it prompted me to learn about more opportunities that the VA offers. And they do seem to be offering a lot of things for the whole wellness. I've tried acupuncture, the battlefield acupuncture. Did not work for me. The guy did tell me that they find that for nerve pain it doesn’t help very many people, but for muscular pain it does tend to.
Shawn became “obsessed” with the idea of suicide after headache medication.
Shawn became “obsessed” with the idea of suicide after headache medication.
And one of the side effects for the headaches was suicidal thoughts. And, okay, so what? I got into a state, a funk if you will, that I was obsessed with the idea of suicide. I didn’t think it was possible for somebody to feel that way. It was scary to me. It was daily. Minute by minute I wanted to commit suicide. And luckily for me, I just thought, okay, it's got to be this medication because I've never felt this way, as depressed as I've had feelings or whatever, and I just called the doctor and said I’m stopping it. And it was about two weeks, and I really felt like somebody turned the lights on again. It was just a bad medication. So that kind of scares you to take them too.
Shawn was apprehensive about the prescriptions he was given because of concerns over addiction and side effects.
Shawn was apprehensive about the prescriptions he was given because of concerns over addiction and side effects.
And he tried me on a number of medications. None of them seemed to help at all, and on my part of it, I've never been a good one to take medications for very long. Though believing in the power of medicine, I guess I was afraid to either become addicted to it or I grew impatient when I’d take them for a couple weeks, and I don’t notice anything. They must not be working. Why take them? And then you get the warnings about some, and I've had clinicians even say, you shouldn’t be taking that. That's really bad for your liver, or that is addicting or something like that, but the other VA doctor gave it to you. So you hear all that conflicting stuff, and that's good because we should have different opinions, but there's this fear. And I have two family members that have died from addiction, so that's part of it too, my hesitation in taking them, but knowing that I have to take more if I want to solve some of my health problems
Shawn is grateful for propranolol for his headaches and gabapentin for pain.
Shawn is grateful for propranolol for his headaches and gabapentin for pain.
The medication I’m on now for the headaches has helped a lot. I made a promise to the doctors I started seeing this last January, 11 months ago, that I would follow their advice and stick with the medication because, like I said, I probably didn’t give a true effort. Meant to, but I probably quit too early, so I stuck with it, and I have felt not only the gabapentin has helped with the nerves, but the other medication has helped with the headaches. I still have them, but they're not as severe, and I've only had two days probably since March where I had a hard time getting out of bed. So I feel like although nothing is fixed, they're much more manageable.
Shawn was initially disheartened after trying to find answers, but felt a deep sense of relief when he ultimately received a diagnosis.
Shawn was initially disheartened after trying to find answers, but felt a deep sense of relief when he ultimately received a diagnosis.
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.