This has been a strange year for me so far. In some ways it was really great, but again my health has stopped me from enjoying life the way I want to. My daughter gave birth to my grandson, Colton James, two months ago and in April I published my first book. You would think I would be really happy, and I am trying, but pain is a real big problem and I keep having to go to the hospital.
Since I moved to Florida at the end of 2012 I have noticed that the V.A. here is just not really that together. I had my share of problems everywhere I have lived, but Florida is just really screwed up for the most part. I seem to have to fight with clerks, nurses, and doctors – sometimes on a daily basis. I should not have to do this. I don’t have a lot of fight left in me.
Today is a scary day. I am fighting to breath and fighting severe pain from my neck to my feet. I just got a catheter taken out, but now I am again having to push hard to urinate and I seem to have to go every five minutes. I don’t sleep much these days; maybe three or four hours if I’m lucky. After a few days of this I pass out for about six hours and then I wake up with chest pain and trouble catching my breath.
In case you were wondering where I have been and why I haven’t been writing here I think the last paragraph sums it up. I also have been in the hospital for various serious issues six times this year. I just don’t really have a lot left to say sometimes. It’s hard to write when you feel like you’re dying.
I can’t help but wonder if this is maybe what the VA wants. I am a problem child to them. Every time I go to a doctor they are like, “Okay, tell me what your priorities are – I only have so much time.”
I understand that other veterans are waiting and I don’t want to take up too much time, but this last time I asked for a longer appointment and the clerk assured me that the doc would take as long as I needed. Of course, he was wrong. So it would be much easier if I passed on than to take the time to actually deal with me. I also have a claim for service-connection so I am a big problem to them. They don’t want to pay me what I deserve and what my family does for sure because they are the ones who care for me and watch my back, they deserve it. My time is short, I know that, but they deserve something for taking care of me daily. My wife has health issues too, but yet she does everything for me and I am helpless to do anything about that.
I recently tried to receive home health care and I got called by a nurse practitioner who had a problem with my request. She said I was too young. I agree, I said, but I didn’t choose to be sick. I have so many issues that I have to carry around a list of meds and conditions. She was so rude. She asked me a series of questions about whether or not I was in diapers and things like that. I think she missed her calling as a drill sergeant. She kept harping on my age and I have heard it before. Kids get cancer – why can’t I have gulf war illness? I was, after all, in the gulf war! If you go to the website for home health care at the Orlando VA they state that age does not matter. I guess she didn’t get the memo. Typical.
I was really excited when I was able to go to the Orange City, Florida VA clinic. I thought it would be closer to my house than Daytona, but with traffic and the indirect route it is still almost a two-hour drive. I am amazed by the fact that you cannot call this clinic. Well, I should say you can call all you want, but if you want to actually speak to somebody than I don’t think you’ll want to spend a week on redial with them while the phone rings and rings.
I should be able to reach my clinic. I just got out of the hospital for 10 days and nobody seems obligated to reach me by phone, however, they love to make appointments I can’t make on my VA pension. I don’t have enough money for gas. They do reimburse me, but it is about a month later. That doesn’t help me this month.
I tried to complain about some of these issues and more and they have just blacked out communication. If you try to call Orlando VA it’s often voice mail. I tried several times to reach the Orlando patient advocate’s office and they don’t answer. You leave a message and unless you raise holy hell like I did last time about how I had never received a call back in 4 tries to contact them in the last few months.
The woman who called told me that I should make my appointments. Apparently my wife and I should starve because we need to make medical appointments. Oh, did I forget to mention that my wife has serious stomach issues and other things to do with personal issues. Let’s just put it this way – she does not do anything but puke every meal out. Not on purpose, of course, but, because that’s how bad her stomach is.
A surgeon did not tie off right on an ulcer operation for her and she almost died. She had her stomach in a triple hernia and she was very ill. She also has had other issues to do with hyperglycemia.
I have so many issues myself to do with the Gulf War and they are not recognized. Nobody seems to have the time or inclination to help me. I am not worthy of a VA doctor or PA, in my case which is typical here, who probably hates his position there and is going to show it, to actually read my record. To actually see the many issues I deal with on a regular basis. I cannot hardly move from the chair to the bathroom or the bed to the kitchen.
It seems that things are much different here in Florida. I hate to say it, because it is something locals hate, but I was spoiled in Wisconsin. I know that there are many, many more veterans in Florida. The most of any other state, I belive it is 8 million, but why can’t they ask for more staff? Probably a budget issue. The employees get more money this way? I don’t know, but for whatever reason there’s not way to get people to answer phones, read records, and you can’t even get an introduction, at least not a proper one, from a VA doctor. They don’t want anything but a quick in and out from you. I’m not an in and out kind of patient. I have had my rights violated in so many ways for too many times and it needs to end.
So what do I do now? Well, I saw that the VA “Secretary Bob” has given out his cell phone number and well, I decided, “What the hell!” I’m going to call the number? I was nervous as could be, but I did it. I complained.
My main complaint now is something that I probably should be so ashamed of, according to the VA, I smoked a joint when in pain before I signed a contract not to smoke anymore after they gave me a very small amount of pain killers.
I don’t do hoops since I got out of the Navy and I don’t plan on jumping through any damned hoops again! I grow my hair to the damned length I wish, I don’t shave if I can’t stand in front of the mirror very long and I just don’t take orders anymore.
I have earned that right by the six years I gave the Navy. I wasn’t a perfect sailor, but I wasn’t the worst one either. I did some things that I think are commendable and the point is I shouldn’t have to defend my reputation.
So, I was told I have to see a drug counselor and then report promptly to the Pain Clinic again. After Gainesville and the treatment I got there where I was told I was fat, lazy, and uneducated, I will not go to another pain clinic in my lifetime. I will not see there “pain psychologist.” Which is like “military intelligence,” to me! The two words just don’t go together. It’s a major mismatch of terms. What am I going to use Freud to stop the pain?
Next, I plan to contact the local newspaper, TV stations, maybe the VFW in Washington, D.C. or whoever will listen and let them know that even the social workers at the VA are unable to help. They don’t seem to have the time from the things I was told. Nobody wants to do their job or they are just too unorganized and incapable to keep up to the standards of the treatment of veterans that are in serious need of some help like me. They make excuses and say how busy they are and I know they are, but I have also been in the lobby while the phone rings and people who are not busy are just ignoring the phones.
God help you if you are planning to move to Florida. My advice if you are a veteran is go somewhere else if you want good healthcare. I have been to both local VA systems in Gainesville and Orlando and I am so frustrated with both that I am just ready to burst with stress and I don’t need it and neither does my wife. God help you too if you ever become sick or disabled. This country isn’t helping people like me or my wife. They have all these programs and they don’t seem to want us to use them. Isn’t that what they are intended for? That’s what I thought, but I was told that home health care was a program I had never heard of. I could actually get a doctor to come to my house.
The social worker said, “It’s usually for people who are wheel-chair bound or who can’t hardly get around and have no wife to drive them.”
I almost burst a blood vessel in my head when I heard this comment! She has no idea how much it hurts my wife, who also suffers from sciatica and hip trouble, along with some mental health issues, and anxiety. How dare her just assume that I am not a candidate when I can barely walk, I have been hospitalized four times in this year alone. I spent New Years to Easter in a damn hospital. I am completely fed up with the Florida V.A.
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…
View original post 3,501 more words
About a year ago I went to the Emergency Room of a VA Hospital in Florida where I live. I was having severe pain in my sciatica. Despite the fact that I was taking Morphine or MS Contin and Oxycodone I was still in pain. The doctor did an MRI on me and they basically said there was nothing that could be done. They suggested I go to the Pain Clinic to ask about hydrotherapy, acupuncture, and other means of therapy. This sounded good so I said I would talk to my doctor. They also said I should be on some sort of muscle relaxer. I then went to my doctor and told her everything and she asked why I need a muscle relaxer (a non-narcotic) and made it sound like I was a drug addict. She agreed to send me to the Pain Clinic. What I didn’t know was that she had suggested I be taken off all narcotics to get the muscle relaxer.
When I first went into the Pain Clinic I was greeted by a doctor with broken english and a very young doctor who was supposed to be a pharmacist. I was confused by this because I thought I was there to talk about therapy, not my medicine.
Right away the focus was all on my pain medication. He said they were going to ween me off all narcotics because several veterans have overdosed. I said that I take them the way I am supposed to and that I have a family to live for. He then said that it was because of my sleep apnea. He maintained that I could fall asleep and not wake up. I said that I thought that was what my CPAP machine was for.
Next he told me that I should stop taking Prednisone because that’s most likely the root of all my problems. This was the funniest excuse to me. I was prescribed Prednisone due to a condition called PMR that causes severe inflammations and pain in my left shoulder. I couldn’t believe what I was hearing. I naturally thought this guy was a quack so I did some research on him. He is not even a pain specialist, but an internal medicine doctor.
When I stated my objections over several more visits this doctor got real defensive about his service. He is an officer in the National Guard and has been to Iraq twice. I find that very commendable, but irrelevant. I told him it didn’t matter, but he continued to sing his praises and try to impress me with his war record. I could care less. He tried to say it was nothing personal, but it’s very personal. He has ruined my life by taking away the one thing that helps me hold on and get through the day. I’d say that it’s personal when it affects your sleep, your relationships, and your attitude.
I then saw this doctor’s supervisor and he was a big jerk. He examined me and was very nice at first and then proceeded to call me fat, lazy, and uneducated. I was really insulted and wanted to smack him. I almost did. I had to get up and leave. I tried to go to a patient advocated, but anyone who has tried this route knows that they don’t get involved in this kind of thing and always take the side of the doctor. I also tried going to my Senator and that was no help. He wrote to the Administrator who then sided with the doc.
So, basically now I have been without pain meds for 8 months. In some ways I do like the fact that my head is more clear, but there are moments where I want to just scream and pull my hair out. Nights are the worst for me. I smoke cigarettes and wonder why I can’t be normal like everyone else. My wife is sound asleep, there’s absolutely nothing to do and nothing seems to help. I really have tried everything and there’s nothing that works. As time goes on unfortunately you learn to deal with it because you have to, but I really don’t think I should. I did my time and I didn’t ask for this. I think it should be up to the VA to fix this problem. I warn all of you to stay away from these Pain Clinics unless you have Cancer they will not help you. I am now red flagged and can’t get anything without an override. I am miserable most of the time and do things like write here to keep my mind off of the pain. Also, if you live in Florida I would especially keep an eye on your pain meds because they are really cracking down here on the label of the “drug capital of the world.” or the pill-mill state. Now it’s the “no pills at all” state. My wife is disabled also and she can’t get anything for pain either from a regular doctor. They tell her “tough luck.”
I am not a doctor, nor do I pretend to give medical advice so anything written below should be considered by you and your medical provider. I am only stating what has or has not worked for me. I am listing many different options for anyone looking to try something new. I also have included several links for more information on the links page. Here you can find many useful links to websites and books and more.
Kratom: I have tried Kratom recently and found that the powder in tea or a hot drink like coffee works well to relax my muscles and my back. I use about a teaspoon and a half in my cup. There are different blends and strains of Kratom for different ailments such as anxiety, headaches, energy, and more. Do some research. For now this is legal and I buy mine at a smoke shop, but it can be bought online as well. I have not had any harmful side effe
cts from this, but check with your doctor if you have any concerns.
Marijuana: I have used marijuana if I can afford it. I’m not alone as many Americans are finally realizing the benefits of marijuana medically. For years many Cancer patients have used to get through chemotherapy and to relax aching muscles and more. It can also relax you and aid in sleeping more regularly. I am not encouraging anyone to break the law at all. If you are lucky enough to live in a state where it is legal you really have a lot of benefits available in edible cannabis and better strains of this plant which holds so many possibilities of treatment. Personally, I don’t drink alcohol as it makes me very mean and for some reason I used to like to drive while drunk often so marijuana to me is much better than drinking as all I want to do is relax and watch a good movie instead of raising hell and getting into legal trouble.
Charlotte’s Web: This is a cannabinoid oil that can be smoked to relax muscles and has been effective for the use in children or those who benefit from the use of THC pain relieving qualities, but doesn’t give the euphoric feeling. It is legal in all states now.
Chiropractor: I have used one of these and it didn’t help much for me, however I have friends who swear by their chiropractor. They work on your muscles and spine mostly to prevent further damage. They also help with joint pain. If you have a chance you might want to just meet with someone at the office of a chiropractor and see if you can discuss how this could benefit you.
Integrative Medicine: This type of treatment combines mainstream medicine with alternative remedies. It seems that some doctors feel compelled to find out about certain treatments that are just simply ridiculous and then those that may have acutal benefits toward the patient. This type of medicine also emphasizes a close relationship between the medical professional and his or her patient.
I have benefited from some other things that may or not be labeled. I know that some of you may not believe in God or practice religion for whatever reason, but I personally have found a lot of help from my spiritualism. I don’t think I’m extremely religious and I don’t go to church because I don’t care for crowds and when I have been involved with a church they seem to be hypocrites to me, but of course not everyone is like that. I just prefer to worship in my own way. I also enjoy just trying to improve myself in any way possible whether it be learning to speak French, reading a self-help book, or looking at a bible. I also have enjoyed some books by authors listed below that are about spiritualism or self-help. I also enjoy trying to meditate sometimes. I’m not really a meditation type of guy. Being a big, clumsy oaf looks funny when your wife walks in on you repeating “OHHHMMM.” I was really embarrassed, but my wife knows I’m certifiable most of the time anyway! But if you focus your breathing and your mind to a silent place it can do wonders. I have managed to block out hours of pain with this type of behavior and with the help of music. I usually put on some Neil Young or similar softer rock that I can sleep to. The Eagles are my favorite to chill. All the good times associated with my favorite music is the key for me. I dream of when I was younger and healthier and I also imagine that some day I will be healthy again.
Hopefully we can all agree that there is a force in this universe that seems to somehow regulate karma and things like that. So if you can get behind a “higher power” you might want to try to work on being open to new things. Just try a book on self-help even if you swore off them forever years ago. Maybe Tony Robbins pissed you off as much as he did me. I just think there are some good books that everyone should read. I will list the ones I can think of below with some links. There are also fiction that deals with spiritual type plots. One of my favorite is:
I also recommend trying to lose all anger you may carry around. Think about your frustration and how it is ruining your life. You may also want to try to let go of all guilt, resentment, and any other negative feelings that will sure bring you down and affect your health. It especially doesn’t pay to just lose your temper. Believe me I have had to learn the hard way. Next time you feel yourself wanting to explode just take a walk, listen to music or anything to get your head straight. One thing that always freaks out a bully or somebody who is acting strangely is to be super kind back to them. They are caught off guard and may even start treating you with more respect. Smile as much as you can and you may find your body responds with a happy feeling. I know that this stuff may sound a little strange to some of you, but if you spend as much time as I do trying to deal with chronic pain you will try anything! Good luck, and I hope that you find a good place to start dealing with getting your life back on track as much as that’s possible.
Visit the links page for links to great books on all kinds of alternative medicine, herbal remedies, spiritual and self-help type books.
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 how 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 (as it used to be when I was making 50k a year as an Art Director and had very good insurance). They don’t want 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 am in and they just keep telling me that there is no solution, but to take 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 has 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 either see a doctor outside the V.A. or I can say that I am actually happy with the treatment I receive at the Veteran’s Affairs.
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 with Obamacare and Malpractice suits, rampant drug abuse… Whatever the problem is I guess it’s a terrible time to have serious medical problems! (what was I thinking by going to war!) 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 actually 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 promised here I would stop and I did. I’ve been sober for 20 years aside from when my Dad died – I raised a few for him. 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.
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.