Shannon

I’ve taken a lot of classes. I think that there should be way more classes just for women, because women’s issues and men issues are two different things. And I find that I am the only female, other than a wife that’s in the group I’m in now, my Whole Health group. And I find it difficult to share, you know not because I don’t want to but it’s just that I’m in a room full of men. And there are some things that are female related versus men, and I just kind of feel uncomfortable about sharing some of my things, so. And men don’t relate you know to a lot of the women issues, so. So that would be nice, if there was more all women groups, that would be good. And, 'cuz there’s a comradery there, I’m not going to bond with any of those guys, but I might bond with some of the women and you know we kind of need each other, you know? Because we’ve been through experiences in the military that men have not been in and that men have been maybe the perpetrator in. So it’s a lot different situation when you’re just in a group with women, so. So that would be good if they had more women based groups.

Well in my situation, you know for me, number one is patience. You know if there’s something triggering me, I don’t need my family members to start triggering me also, you know? Because I’m having a reaction to something I don’t need my family member to start yelling at me, or you know telling me how I should behave, or how I shouldn’t behave, or what I should say, or what I shouldn’t say, you know? Kind of in that aspect it’s kind of easier just not even to have any contact, you know? Because, I mean you’re constantly triggered if you have that person who’s constantly judging or telling you what you should and shouldn’t do. So, in my situation that’s why I’m glad that she’s leaving because I need to focus on me, but just patience. I mean because we all get triggered from different things and I might just be triggered from somebody saying, you know how is your day? You know? I don’t want to talk about my day, you know my day’s pretty shitty, so I don’t want to talk about it. And then she gets mad at me because then she, you’re being rude you know that’s not nice and you need to be nice and. But it’s a trigger, you know? So then it just sets off everything and then I get angry, you know. Because things aren’t going, it’s just a whole slew of different emotions and… to understand that there was trauma and there are things that are going to trigger, and if the Veteran says I’m being triggered right now, that the family members understand, okay. And they give the Veteran some space and let them go through the motions. Not just keep amping it up, and amping it up, and amping it up, because I’ve been in both situations where I’ve been triggered and I’ve been alone and I can deal with it. And then I’ve been in situations where I’ve been trigged and then I get triggered from a family member and then the family member keeps going and going and going and going. So it’s not a good situation, so. Patience, yeah I think being patient and just understanding, you know that there is a medical condition there and just, oh whatever.

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 would just say, be in control. Don’t let the health system control what you do, or how you do it. You have to take control and do what’s best for you. And if a doctor tells you that this is what you should do, and that’s not what you want to do, or you feel something else is more effective, then request that, try and get that final result. Because medication in the form of pills is not always the answer and sometimes it can be more harmful than helpful. And having the Gulf War syndrome and having fibromyalgia and being chemical sensitive I have to be more aware of my body, so I’m the only one that can tell the doctor, you know? So I would just say be in control, do your homework, try to go more natural 'cuz there are different, lots of natural ways of dealing with your pain and things like that.

I started noticing probably a couple months, maybe a month before we left that I was having issues with fatigue and just overall not feeling well. And then it wasn’t until I came home that I started having, well cognitive I guess issues. Like I would forget where I was going and I’d have to ask my son who was 5 at the time, you know and we’d have to pull off the road and, where are we going? And he’d have to say, don’t you remember Mommy? And then there were, that’s when I started having like these sensations where I’d be driving and then all of a sudden it would feel like I was driving sideways. So it was kind of scary. And that was just, that was pretty much within a couple months or so of coming home. And then, just as things evolved, of course I always had the fatigue, then I started getting the joint pain and then just the overall not feeling well. So, but I have gone up and down as far as my symptoms, there’s certain things that I, as I’ve gotten older I’m finetuning my triggers. But it’s really difficult for family members, of course I’m a single parent with an 18 year-old daughter. It’s really difficult for family members to understand. 

I want to do, I want to turn that into my little gym so I can continue to race my sled dogs, so yeah. So there’s lots of changes that I want to do, but I’m finding that I need to focus on me. The last couple of years that I’ve raced dryland with my dogs, there’s this one race we do up in [location redacted]. You know we come down a hill and we come into an open field, we come up and then we turn left and then it’s a long stretch to the finish line. Well two races, not this last year, but the year before, 'cuz this last year they were canceled 'cuz of the weather, you know we had too much snow for dryland. But I was coming down into the meadow and, twice and like got into the meadow and like the meadow, I just became extremely fatigued like I really wanted to just drop to my knees, fatigued. And I mean it took every little ounce of energy I had left just to get through the finish. So that happened twice, year before last. And so, and I don't know what that was all about, I don't know if that was my fibromyalgia, chemicals or whatever. I don't know what that was all about, but I did. But when I do finish a race I go right to, back to bed. So like if my race time is say is nine o’clock, we have a drivers meeting at eight. So I’m up, I’m getting my dogs ready, whatever, you know if, I tell you if the race is at, if my race time says nine and I’m at nine o’ four. I am so mad, because I’m just like, come on everybody get yourself together, I want to get through with this, you know? So, but anyways, the race marshals are always like, calm down, calm down, you’ll get your turn. I’m like, yeah well that was five minutes ago, you know. But anyways, I’m like, geez. But anyways, so I end up because of my fatigue right after I get done racing, which my race, these guys can run 20 miles, we can go 20 miles, you know. And anyways, so we’re done in a race in like maybe five minutes, seven minutes. Oh yeah, you know we can do two miles, depending on the track. We can do two miles in five minutes or we can two miles in 12 minutes, or 25 minutes depending on the terrain. But when I’m done, I go right back to bed. That’s it for me.

Because my daughter’s a Gulf War baby, that’s what I call her. She has a heart condition and she has a VSD, a hole in her heart. Now I don't know if that’s Gulf related, but studies have shown that a lot of Gulf War parents have had babies with defects. And so when I take her, when she was younger and now she’s older, but when she was younger and I would say, she’s a Gulf War baby, physicians would look at me and just kind of shake their head and be like, what? And then I’d have to explain to them, and they’d still be like, mmm whatever. Well it does exist, and there’s been lots of children that have been born with defects. So that would maybe be another study. But I believe that that is a thing, because things that she’s had, she’s been, as she’s gotten older now, now she’s starting to experience joint pain and pains that I can relate to. And so I don't know if that’s something that we as Gulf War Veterans brought back with us and that our, gave to our children, genetically. But I know that she has been talking about issues that she has, but she does have the heart defect also. And I know one of the, one other female in my unit that went over with me, she had three children and each one of them had to have open heart surgery.

But it’s really difficult for family members, of course I’m a single parent with an 18-year-old daughter. It’s really difficult for family members to understand, I mean I don't know maybe in my situation my daughter just doesn’t care, but I try to explain to her about my triggers and she doesn’t get it. And so, I get yelled at and things like that, so. I mean you’re constantly triggered if you have that person who’s constantly judging or telling you what you should and shouldn’t do. So, in my situation that’s why I’m glad that she’s leaving because I need to focus on me, but just patience. I mean because we all get triggered from different things and I might just be triggered from somebody saying, you know how is your day? You know? I don’t want to talk about my day, you know my day’s pretty shitty, so I don’t want to talk about it. And then she gets mad at me because then she, you’re being rude you know that’s not nice and you need to be nice and. But it’s a trigger, you know? So then it just sets off everything and then I get angry, you know. Because things aren’t going, it’s just a whole slew of different emotions and things.[…] Patience, you know and to understand that there was trauma and there are things that are going to trigger, and if the Veteran says I’m being triggered right now, that the family members understand, okay. And they give the Veteran some space and let them go through the motions.

Shannon: But yeah I’m very, very aware of my body, so. Sometimes it even causes me anxiety, so sometimes it’s not so good. But, yeah, I mean it just, yeah 'cuz when I, if something like triggers in my body then it will increase my anxiety, so yeah. That’s kind of a tough one sometimes to decipher.

Interviewer: ‘Cuz then you’re like, oh no I’m getting worse. And then you focus on it__

Shannon: Right, well and then, and that’s why I think the medicine is important. Because the medicine, or the symptoms of, some of the symptoms 'cuz I have different varying degrees of anxiety, can trigger, or. An anxiety attack can mimic a heart attack, you know the symptoms. And so that’s, it’s counter, it’s not productive when you’re having a panic attack because when you have a panic attack then you’re thinking you’re having a heart attack. And then you go to the emergency room. And I mean and if it’s just a panic attack, that’s not an emergency but I mean it is having an effect on your body. But if you have the medication to where you can take the medication, then you’re like, oh okay now all those symptoms have gone away I’m not having a heart attack and I don’t need to rush to the emergency room every single time. I think that, overall for mental health also would be very beneficial, to be able to take the medication. See I do take the medication as needed. And so, I had to get an outsource doctor to give me the medication but I only take a half a milligram as needed__

Interviewer: If you’re having a panic attack, or?

Shannon: __and I control that, yeah. And I control that. I mean I might go two weeks, I might even go two months and not have a panic attack. But then when I do, I have it, and then, you know. And that helps me because it’s like, okay well now the symptoms are gone, I mean sometimes it doesn’t help, I mean sometimes I have panic attacks that are just out the roof, and sometimes I have mild panic attacks. But it’s nice to have the medicine because I know that with the cortisone or the cortisol, and all that going through your system, that can’t be good for your body, when you’re having a panic attack. So, yeah that’s, but I’ve had to go to an outside source for that.

You deal with people on a daily basis with PTSD and if you can’t recognize that, or if you’re just categorizing you know just PTSD as dangerous then you need to be educated. Because it’s for anybody who has suffered any sort of trauma. So, it just goes back to, the PTSD and the education that just because you’re a Veteran does not mean that you’re a danger, so. You know, so that’s an experience that I have firsthand knowledge of in this town, so I fly under the radar, don’t go into town. I you know, thank goodness I can just go straight up and straight, hit the freeway, you know. So I don’t have to go through town because I am a target. I have had many, many instances with judges, well one judge in particular, I shouldn’t say judges. But one judge in particular who has it out for me, you know, and so. So yeah I’ve become a target on many levels, you know? Not just in, not just with the businesses here but also with some of people, you know? Or the county offices. So yeah, it’s just and since it’s such a small town it affects the way I live, so, yeah. So I’m kind of glad that I live like way up here where I have no neighbors and I’m far enough away from everybody, you know. But that is part of the problem, and the condition you know of PTSD is, you do isolate yourself, but then it doesn’t help when your community isolates you also, so, yeah. That’s a tough thing, but to go back to the VA, medical services that has helped immensely, you know. Being able to go to all the different programs and you know all the resources that they have, have helped a lot, you know it’s just unfortunate that I have to go there for all of that, which but it’s okay because I get out of town, because I don’t go that way, you know. So that’s okay. But I’m glad that they do have resources and like right now I’m taking, now I did recently take the mindfulness class, so that’s a tough one but I’m trying to be way more mindful of that, of different situations. But other than that I mean there’s so many resources at the VA that sometimes I end up going five days a week.

I just recently went through my whole bathroom, and threw away everything that contained petroleum. There wasn’t any particular reason other than a personal choice to get rid of chemicals that I felt were dangerous to my body. So I got rid of all, everything that was petroleum. And so, no, I don’t use anything in particular. You know I just, I’ve chosen to use cocoa butter but because I don’t want to, and coconut oil because I don’t want perfumes, because perfumes trigger also. So, yeah. I would love for the VA to have an alternative, I have requested that many times, I’ve had certain physicians and whatnot do some research on it. Never have gotten a definite answer other than, no, that the VA doesn’t cover that and doesn’t have that option. But it would be kind of nice to have that option for people who don’t have the choice of taking medicines.

And I’m glad that I’ve got the resources available, you know? And there’ll always be these classes and things like that to go to, because I’ll start one class, which will be an eight-week class, on a Tuesday. But then there’s two other classes on that same Tuesday that I’d like to take too. So I do my eight weeks and then I go to the next one and I do my six weeks or whatever that one is and then. So there’s always something that’s new that I can keep doing to improve, you know, my quality of life. And you know being single, a single parent of course I’m looking forward to my daughter leaving, you know it is very, it is more difficult being single than it would be to have family, all my family’s gone now, so. So I’m the only surviving person in my family and I just lost my sister a couple years ago to diabetes, so yeah. I mean it’s a lot harder I think for me because I have to resource out you know to do just minor things around the house, you know that are too much for me. But, you know I have my good days, I have my bad days, so. So I’m still learning to pace myself that one I’m, it’s going to take me, I may never learn how to pace because when I start to feel good then I want to get as much done as I possibly can. Because when I am not feeling good I can’t do a thing. And so then things pile up and then when I feel good then I need to get it all done, and so that pacing, I don't know if I’ll ever get the hang of that one. But, other than that I think that the programs are very, very beneficial for people who really want to you know really need them, you know?

But when I got hit by the firetruck they took me to the hospital, and of course the hospital has my records, but the, and I did do a CT scan and my daughter kept telling them, she’s allergic to the dye. And they were like, yeah, yeah we know, we know. Well the next day, of course they gave me everything but they gave me so much of it, that the next day I had a hard time walking. And so, I got up and I started walking, and I was like, it was almost like I was like drunk. I call it that I was drug drunk because I could barely walk, I mean it was like I was drunk, drunk on drugs. And, so that took me about three, four days to recover from that. So I had a really tough time with that. But yeah, so I have to just be very careful about medications. So when a doctor introduces something new they have to introduce it at the lowest level and then I have to gradually work up to it, but I have to be monitored. And that’s part of my concern, with my PCP is that, she says okay we’re going to change this or we’re going to give you something new. But then nobody monitors me and I have to monitor myself and then that can be a very dangerous situation if I’m by myself. Because I mean you know when I was taking the metformin, thank goodness my daughter was home, because there were several times where I became paralyzed, I couldn’t move. And then I realized now that obviously it was too much for my system, and now we’re doing slow, gradual. But being by yourself and not being monitored is very dangerous, so I’ve had quite a few situations like that. But, because when I first came back I didn’t realize, that there was a Gulf War syndrome, I mean nobody did. But I’ve had to go through a lot of trials and tribulations basically of my health because I would, became allergic to everything. I became allergic to all antibiotics, sulfurs, statins, all pain medicines, latex, just the list goes on and on and on. And so I have to be very careful because chemicals and smells will trigger me also. But I had to go through a lot physically to find out that I was allergic to everything, you know? And so now as a result of that, now I have to be very careful, not to get sick, which I’ve been very good about that so I don’t get the flu and things like that. I don’t even get the flu shot because I know that that would probably trigger an allergic reaction. So I’ve become very chemical sensitive because of that.

Lack of sleep, is a major trigger. If I don’t get good sleep, which I don’t, that definitely aggravates the Gulf War syndrome and my fibromyalgia, yeah. And I can tell, I’ll get like my arm, my left arm will start to really ache and just recently my, excuse me. Like my left shoulder blade started doing that too. So that’s, so I’ll have physical symptoms that will become worse, so you know I just pay attention to my body. And I think that it helps not being on pain medicines, 'cuz if I could take pain medicines, then yeah I would be taking aspirin or acetaminophen or something like that. But I also think those medications for me, numbed my system when I was taking them long, long time ago to where of course the pain goes away. But, now that I can’t take them I have to listen to my body. And so as a result, I’m more, because I’m more mindful of my body, the VA classes have helped with that. And that’s mainly for me because I can’t take the medicines. But yeah I’m very, very aware of my body, so. Sometimes it even causes me anxiety, so sometimes it’s not so good. But, yeah, I mean it just, yeah 'cuz when I, if something like triggers in my body then it will increase my anxiety, so yeah. That’s kind of a tough one sometimes.

Shannon: So I have to just be very careful about medications. So when a doctor introduces something new they have to introduce it at the lowest level and then I have to gradually work up to it, but I have to be monitored. And that’s part of my concern, with my PCP is that, she says okay we’re going to change this or we’re going to give you something new. But then nobody monitors me, and I have to monitor myself and then that can be a very dangerous situation if I’m by myself.
Interviewer: Absolutely.
Shannon: Because I mean you know when I was taking the metformin, thank goodness my daughter was home, because there were several times where I became paralyzed, I couldn’t move. And then I realized now that obviously it was too much for my system, and now we’re doing slow, gradual. But being by yourself and not being monitored is very dangerous, so I’ve had quite a few situations like that, so.
Interviewer:  I’m wondering how you make sense of like these chemical sensitivities, and how this affects your body and the paralysis, what your thoughts are on that?
Shannon: Well it just kind of depends on the medications, I’ve become way more aware of my medications and way, way, way more educated. Before the doctor would just say, here’s a pill take it. And I would take it. And I’ve had some situations where I was misguided and almost died and now I’m more aware and more in control of my health and my medications. Whereas before if the doctor said, you’re supposed to take this medicine, take it. I would do it and there’s been so many times where it’s turned out to be a very bad, bad, bad situation, you know? Like when I was taking the benzos I think I was taking the clonazepam, I’m not sure exactly which medication it was but it was way back when, 14 years ago, 16 years ago. And I believe they had me on 10 milligrams. And that was like couple times a day, so I mean I was doing that for a couple years. And then at one point, well then they wanted, then they decreased it, which was fine, you know. And then it got to a point where I went in one time and the nurse said, well we’re going to take you off the clonazepam but we’re going to give you this. And I was like, why, the clonazepam works. She’s like, well we’re not doing that anymore so we’re going to give you this, either take it or leave it. And of course I wasn’t educated at that time, and so being forced to take the medication, I took it not realizing that I was not supposed to take it the same way, 'cuz nobody educated me. Nobody said, we’re going to take you off this, and we’re going to give you that but this is not the same thing so don’t take it the same way. And I did not realize that, so I was taking it the same way I had been taking the other medication and I almost died. And so, so yeah that’s in my record. So, I think at that point they classified me as trying to commit suicide, which I was not, you know? I mean, no. But I ended up in the emergency room and the doctor was like, why would they do this, they should have weened you off that medication before they gave you this medication. So, yeah I’ve become way more educated on my medicines and I don’t always take the word of my physician, I always second guess everything because of all the experiences I have had.