It’s not easy to bare your soul and let complete strangers into your life. I realize that this blog isn’t terribly popular, but this is on here as long as I don’t delete it indefinitely and anyone can view it. That being said, I want to let you into my life and what I am going through. I also want to tell you that I know that some of you may read this and think I am whining, looking for attention, or maybe trying to get sympathy. That is definitely not the case. I cannot emphasize this enough. This blog has never been about me. I’d be lying if I said I don’t want help, but I am not a selfish person and I would like to think that my creative gifts are being used to help others, not just myself. If my blog can in any way help even one other veteran get the benefits they deserve than I should think GIV has accomplished something and would hope it continues.
There is a serious injustice in the world today. When I joined the military in 1988 I was only 20. I never gave any thought to the government’s control over me or the fact that when I was older and not able to fight that maybe I would be a discarded veteran at the mercy of a bureaucracy like the Veteran’s Affairs. As I have said before, when I say this I know there are many great workers, some of which are veterans themselves who are trying to do their best. I am referring to the people who run the VA at the top echelon. The decision makers and policy makers. The civilian-contracted corporations who provide cut-rate medicines, medical equipment, medical services, and preside over compensation exams and more. In short, the part that is broken and needs fixing. This is where my anger at the system lies. I also don’t claim to be an expert on the subject. I am still learning every day. I am constantly asking questions and learning from other veterans. Especially our Vietnam, Korean War and WWII vets who have been fighting for a better VA for years. Without them we might not even have a VA.
Now, as I said before, I am letting you into a glimpse of my life that I don’t usually tell many people about for several reasons. One of them is that most people have their own problems and don’t want to hear mine. Since you’re still here reading this I will assume you’re okay with it. Another one is that I believe I have been conditioned by doctors and society to not tell anyone everything because everyone is in such a hurry these days and maybe because they don’t know what to deal with me. In the five years I have been with VA health care I have not had a doctor who could take the time to listen to my medical problems and try and work with me the way a civilian doc would. None of them wants to hear everything and they certainly have not been interested in doing any of the things that are listed as advice on the VA website such as “work with your healthcare team.” Or ask your healthcare team this or that question. I have tried this and it rarely gets more than a strange look and a question about me wanting to see mental health because they think I’m crazy. I have been so confused about what the VA is thinking when they post these things that are on the website, give out pamphlets, and blog about all these lofty ideals and concepts that in reality just don’t seem to happen. (at least not for me anyway).
I have talked with my doctor and nurses about how much pain I was in and they just keep filling me up with pain medications. I have no problem with that and I have come to the realization that I may have to take them the rest of my life due to the overwhelming amount of pain I am in. But if there were a way that I could survive without them I am all for it. I am not some scumbag sitting around plotting ways to get high. I sometimes feel that is the way I am being viewed if the subject comes up and by what is being said to me. However, the doctor is the one who is responsible ultimately if they do not provide treatment alternatives. For example; I went to a rheumatologist about a month ago. I was told by my main provider in April that I had Rheumatoid Arthritis. Then at the rheumatologist she says no. I asked why my doctor said that and she did not know. I was confused. Apparently they have not or will not communicate about it. As always I am in awe of this lack of communication and the lack of concern that one hand doesn’t know what the other is doing on all levels of the VA. So next the rheumatologist says that she wants to know what is wrong with me. So I go over all the many problems I am dealing with on a regular daily basis and she tells me to stop halfway through – as usual not even my doctors want to actually hear it all. (I guess I complain too much. But they asked, right? So I told them.) Next she says some stuff about how my x-rays showed I have extensive arthritis throughout my body. She said the only way to deal with it is pain medications. She offered to give me a shot of cortisone. (which rarely worked in the past). She asked me where I wanted it and I said I would like to try my knees because they hurt bad a lot of the time especially at night. She did it and no help. She told me to call in a few months and set up another appointment to have another cortisone shot. I was so confused about this lack of help that I just sat there looking at her until she told me to leave. This was the appointment I had been looking forward to for months and no help. The other thing that bothered me about the visit was I asked about arthritis medicines and she said, “Like what?” I just throw my hands up. I know there are arthritis medicines, but I just asked and she didn’t know or didn’t want to talk about them or god knows what this doctor is saying or doing and that’s pretty much where I stand with every single doctor I have ever met at the VA. I have never felt like they have my best interest in mind or they could care less whether or I live or die as long as they keep their job. This just makes me want to give up, but I won’t. I will keep on fighting until hopefully some day I may be able to work my way back to going to what I call a “regular” doctor outside the VA.
Perhaps it’s not the VA. I don’t know. Maybe the entire medical establishment is in a who gives a shit state-of-mind due to recent changes. Whatever the problem is I guess it’s a terrible time to have serious medical problems. Before I had all these issues I felt bad for people like me, but I could never truly understand how badly it affects your every day life until it happened to me. It affects every asset you have – your weight, your body, your mind, your spirit, your values – it takes all you got to get through it and the movie can only end badly.
My life is depressing and I try to keep upbeat, because I have a family. I am a man who has always been tough and tried to do my best to be a good dad and husband. My wife had a rough life. She grew up in a small town in Florida with not much money and she was abused by her first husband and so were her two boys. When I first met her I was still in the service. I was stationed in the small town she grew up in. She had three kids when I met her and she dreamed of meeting somebody some day. I am glad I could make that dream come true. I had been drinking heavily when I met her and I went to rehab and stopped. I had no problem raising her kids as my own and that’s what we did. The kids are all grown up now, my daughter, the youngest – just turned 18 on August, 20th.
Now, I am 45 and every day seems worse than the last. I am going to start with the last weekend. It’s Sunday afternoon to you, but in reality to me it’s more like Sunday morning. I don’t always have the ability to sleep so I never know from day to day what my schedule will be. Let’s start with Saturday. I started having severe pain in the afternoon. I hadn’t slept more than four hours the night before and maybe a couple of ten minute cat naps here and there. The severe pain is about an 8 on the scale to start with and gradually works it way up to a 10 on that pain scale the docs love so much. If I could go higher it would go up to more like a 20. (keep in mind this is with two different types of painkillers.) Sometimes it comes down to about a 4 or 5 at the lowest, but that doesn’t usually last long.
The pain starts usually in my thighs. It feels as though a piano wire is being wrapped around the meat of my thighs. I am used to it happening every day so I try to ignore it. I do whatever I can to keep my mind off of it. I read, I listen to music, watch a movie, try to talk to my wife or daughter, I surf the internet or I write. I mostly write. I am trying to finish a book I am writing and I work on this blog. Anything to not have to think about the pain.
The pain in my lower back is always there. It hardly ever completely goes away. I do stretching exercises twice a day to try and keep it loose. This has helped my posture and maybe in some other areas, but the pain has not gone away. I also have stretching exercises I just started for my shoulders. (all my joints are in pain every day due to fibromyalgia, arthritis and polymyalgia rheumatica). The pain in my back gets worse and worse as I move around. I don’t work (disabled) so this is just daily movement to try and make meals, grooming, dressing, etc… and I try my best to try and do slow purposeful movements as I was advised in physical therapy – keeping in mind how I used my body. I was advised to do certain things that may help you if you have this problem – I have been just recently buttoning up shirts ahead of time before putting them on or putting on a belt ahead of time in pants etc.. that way I don’t have to reach, although I mostly where loose fitting, easy to put on clothes.
I am usually able to handle the pain during the afternoon because I have been living with it for years. I used to work with it and I tried my best to ignore it when I was younger. However, when I got older it just seemed to beat me down. I have a high tolerance for pain and I don’t usually talk about it so this is hard to write.
On top of the pain I fight the mental problems which I think is the hardest thing. I am fighting depression, anxiety, and a mood disorder. I wonder why? I don’t like crowds, I don’t always do well talking with others and I get pissed sometimes – so sue me. I don’t know who wouldn’t be pissed if they had to live in pain, couldn’t work, and was broke all the time. I live off a VA pension and I have been waiting five years to try and get the service-connection I know I deserve that would give me twice the amount of money I am getting now. If you don’t like what I am saying or you don’t think I have a right to complain I would be happy to trade places with any of you who are not as sick as me and have a job any day of the week with no questions asked. Ever see the movie with Eddie Murphy – Trading Places?
Moving on, about dinnertime, I am getting the full pain gamut that I have daily. My guess is because the temperature is dropping. I think arthritis is a lot of my problem because temp. changes are a big factor in my pain level. I start getting severe, sharp pain in my knees, I feel like there’s pins and needles in the top of my feet, and my neck and shoulders hurt. During this time I am also dealing with some other problems. I have chronic diarrhea or IBS. I have a constant ringing in my ears or tinnitus – this is just in the last few months. (no cure for that). As the night goes on the hissing in my ears also seems to gradually get worse. I have no idea why. I also have stomach cramps up under my left rib cage and I don’t know why that is either. I have told doctors and they don’t know either. Of course they also haven’t offered to try and find out why by testing.
So I am dealing with all this pain and I am always tired, but I can’t sleep as much as I may try. Saturday night I tried to relax because I hadn’t gotten much sleep for a while. Four hours is not much, but that’s better than nothing which also happens. I try and relax and watch a movie or listen to music. I played a video game on my PS2. I tried laying down about 10:00 PM. I fixed up my pillows so that I am sitting up because I have sleep apnea and I am afraid that since I can’t handle sleeping with the mask on that I might die in my sleep if I lay flat. The reality is that I don’t think it matters. I wake up gasping for air, my heart beating really fast and I am always constantly thirsty and tired. I still can’t sleep after 20 minutes.
So I try and watch something on television. There’s not much on basic cable after 10pm. I can’t afford to buy more channels or rent movies or any of the extras that most people enjoy. My friends ask me if I used the DV-R to record a show and I say I have never been able to afford one. This is life without a job. I don’t have HBO, I don’t have any extras – I just am lucky to have a roof over my head and clothes on my back. Three years ago I was homeless. I am thankful for what I have, but on nights like last night it would’ve been nice to have something to keep my mind occupied. But I try and get into some old black and white movie.
By 2 AM I am going crazy. I try listening to an audio book, but I can’t concentrate. My wife and I don’t sleep in the same room. She is sick too. She gets SSI and she has daily stomach problems to deal with thanks to a botched ulcer surgery. I am up most of the time anyways, but she doesn’t like our mattress. We haven’t been healthy enough to make love in years either so it’s not that big of a deal. She is asleep sort of. I hear her get up often. We both don’t sleep anywhere as much as we used to. I lay in my bed and notice that the ongoing sea of crickets chirping in my ears has gotten worse. I am really tired now. I can’t stand it. The pain makes it so that I can’t possibly get comfortable. I have taken the daily dosage of pain medication so I have no outlet there. I decide that I have no choice but to take a sleeping pill. They’re prescription, but when I take them I tend to sleep so heavily that I am seriously afraid of dying in my sleep due to the sleep apnea which causes heart attacks and strokes. It’s a catch-22, but I try and avoid them when I can. I would hate for my family to find me dead.
I woke up this afternoon at noon. I slept from 5:30 AM to noon. (six and a half hours). This is about as much as I can sleep. This is a typical cycle for me. I average about 4-5 hours of sleep all week and then by the weekend my body is craving sleep so much that I have to take a sleeping pill and get an extra hour. I don’t know why – I also have chronic fatigue syndrome. This makes me tired all the time.
So now it’s about 7 PM, Sunday evening and the whole vicious circle continues. Another day and more pain, another restless night, and more wondering how it’s all going to end if ever.
I want to mention that I also have some other problems I deal with daily. They may be considered minor things, but in the scheme of things when you are dealing with a lot of medical issues these things certainly can hinder everything else. I have to take my blood pressure every day for hypertension. Not a big thing for me. I take a couple of meds for this too. My BP is usually higher when in pain. I also have elevated white blood cell count. I have no spleen so I am told this is normal, but I have heard that many veterans who were in the gulf have this. It concerns me, but I doubt it concerns anyone else. When I wake up in the morning my body is asleep. My legs, my hands, my arms all have to be woke up – they’re cold. My hands are curled up in a ball. I have carpal tunnel syndrome too. (not a big deal considering the other things.) I have trouble walking as well and walk with a walker. I can’t walk very far before very severe pain sets in and I have to rest. I have trouble sitting or laying down for a long time and have to stand or move around a little bit so I am up and down all the time.
I also have a serious problem with bright lights and sunlight. I don’t like it. It gives me headaches. I also deal with severe headaches that can come on at any time and just are the kind of headaches that knock you on your ass.
In addition, I can’t stand the smell of chemicals such as common household cleaners, perfume or cologne, or bleach or anything like that. I start to cough and sneeze and get a headache from that. I have asthma and COPD and take several inhalers daily so I’m guessing it’s this or some sort of effect from some sort of exposure. I may be leaving things out even because I never know what’s next for me. I don’t like it and I don’t want it, but the fact is that I seem to be having a lot of compounding problems for the last five years and I never know what’s coming next. Throw the flu or a cold in the mix and I am wiped out for days.
Well, this is a day in the life for me. I have been brutally honest and I know that if you are still reading this and you don’t know have these type of problems it may be hard to understand. You may be thinking that I am complaining or that I’m not thinking about the people that are worse than me. That’s not true at all. Those thoughts keep me going all the time. I know that it could always be worse and it most likely will. I am documenting my experiences as a veteran of the Gulf War. I have Gulf War Illness or Gulf War Syndrome –- whatever you want to call it and all I know is that some day it will be the end of me and none of that will matter. Perhaps it will matter to future generations and some day we will stop subjecting our kids to these horrific mistakes that could have been avoided. Recently there has been a lot of testing done and it looks like we are closer to getting better treatment possibly — it only took 23 years to prove it’s not psychological. 75,000 people could have told you that a long time ago.